Background: A positive aspect of pain is that it warns us of potential or actual bodily damage but if it persists its benefits are lost and it becomes a chronic condition with disabling and costly consequences. Pain is a common symptom suffered by people with cancer but it is unclear if people with cancer pain require further help from healthcare professionals in order to treat their pain holistically using a biopsychosocial approach. Purpose: To identified the unmet supportive care needs of people with cancer pain; and to explore the relationship between symptoms such as pain and unmet supportive care needs. Method: A quantitative approach has been used to explore the unmet supportive care needs of people with cancer pain. One hundred and sixty two people, who required around the clock analgesia, completed a validated needs assessment tool, at two Time Points, in order to investigate whether they had any issues or problems that they required further assistance with over a 2 month period. The data was analysed using descriptive statistics and backwards logistic regression. Findings: Eighty percent of the participants had at least 1 unmet need. The main areas where people needed more help were in the psychological and physical daily living domains. Psychologically, people had concerns about their loved ones and uncertainly about their future. Physically, people wanted more help with fatigue and not being able to do their usual activities. People with uncontrolled pain and breakthrough pain equally needed as much help in these areas, emphasising that even if people only have intermittent pain it has a huge impact on a person’s psychological and physical wellbeing. The participants’ unmet needs improved over time but this was not dependant on a change in the control of pain. Conclusion: The psychosocial needs of people with cancer pain are not being met if they have uncontrolled or breakthrough pain. Pain assessments should include an assessment of unmet needs. However, due to the subject nature of unmet needs it is difficult to demonstrate that that inventions, that are intended to reduce unmet needs, are effective.
Background: Prostate cancer (PCa) is the leading cause of death among Afro-Caribbean men in Trinidad and Tobago (TT). TT is listed as one among countries with the highest PCa mortality rates in the world (Hosein et al., 2016). A systematic review undertaken explored men’s cultural beliefs about prostate symptoms and help-seeking behaviours, which revealed a dearth of knowledge of Afro-Caribbean men and PCa (King-Okoye et al., 2017). This study aims to explore men and partners experiences along care pathways for PCa in TT, including the beliefs and meanings men associate with their illness and its presentation. Methods: Utilising Straussian grounded theory, semi-structured and focus-group interviews were conducted with men (n= 51) diagnosed with PCa and partners (n=16) at four (urology & oncology) centres throughout TT in 2015-2016. Results: Five categories: ‘Disrupting the Self’, ‘Disconnected to Health Services’, ‘The Silent Wall’, ‘Blame and Distrust’ and ‘Breaking the Silence’ and a core category, ‘Silence among Afro-Caribbean men’ (SAACM) were generated from the data. These connect with men’s late presentation of PCa at emergency services with severe and life-limiting symptoms associated with high mortality rates for this disease. The main reasons underlying men’s late presentation to health services with debilitating symptoms, concern masculinity norms, lack of awareness and knowledge of early stage PCa, cultural beliefs and practices and perceptions of an uncaring health system. These heavily influenced men’s ability to access care and move through routes to diagnosis for PCa in TT. Conclusion: The SAACM offers unique insight into identifying how men’s cultural beliefs, hegemonic masculinity and lack of knowledge and awareness of the prostate and PCa resulted in delays in help-seeking and subsequently late diagnosis. A better understanding of men and their partners’ experiences along routes to diagnosis for PCa can target specific public health messages to address barriers to early diagnosis for men. Key words: Trinidad and Tobago, experiences, beliefs, culture, silence
A new treatment paradigm has emerged with many patients now receiving oral chemotherapy (OC) as first-line treatment for cancer. Treatment with OC has resulted in reduced hospital costs, more autonomy for patients but with added responsibilities for patient self-management. Little is known about patient's knowledge following patient education to enable optimal adherence with OC. A mixed methods study was carried out using a self-report questionnaire to patients on OC for multiple myeloma (MM) followed by semi-structured interviews with patients at home. Analysis identifies high rates of adherence (92.2%) with OC for MM. However, statistically significant knowledge deficits were identified, which were related to patient ethnicity and to gender. There is the potential for non-intentional non-adherence with OC due to deficits in knowledge of OC. Support at home needs to include primary care practitioners such as GPs, practice nurses and pharmacists so that timely support is easily accessible especially in the early phase of treatment.
Background:Oncology follow-up has traditionally prioritised disease surveillance and the assessment and management of symptoms associated with cancer and its treatment. Over the past decade, the focus on late effects of treatment has increased, particularly those that have an adverse effect on long-term function and quality of life. The aim of this research was to explore factors that influence the identification of treatment-induced female sexual difficulties in routine oncology follow-up after radical pelvic radiotherapy.Methods:A structured observation schedule was used to systematically record topics discussed in 69 radiotherapy follow-up consultations observed over a 5-month period.Results:Analysis suggests that physical toxicity assessment focused on bowel (81%) and bladder (70%) symptoms. Vaginal toxicity was discussed less frequently (42%) and sexual issues were explored in only 25% of consultations. Formal recording of radiation toxicity through assessment questionnaires was limited to patients participating in clinical trials. Surveillance activity and the management of active physical symptoms predominated and psychosocial issues were addressed in only 42% of consultations.Interpretation:Female sexual morbidity after pelvic radiotherapy remains a neglected aspect of routine follow-up and cancer survivorship. Developments in both individual practice and service provision are necessary if the identification and management of treatment-induced female sexual difficulties is to be improved.
Prehabilitation is increasingly being used to mitigate treatment‐related complications and enhance recovery. An individual's state of health at diagnosis, including obesity, physical fitness and comorbidities, are influencing factors for the occurrence of adverse effects. This review explores whether prehabilitation works in improving health outcomes at or beyond the initial 30 days post‐treatment and considers the utility of prehabilitation before cancer treatment.
A database search was conducted for articles published with prehabilitation as a pre‐cancer treatment intervention between 2009 and 2017. Studies with no 30 days post‐treatment data were excluded. Outcomes post‐prehabilitation were extracted for physical function, nutrition and patient‐reported outcomes.
Sixteen randomised controlled trials with a combined 2017 participants and six observational studies with 289 participants were included. Prehabilitation interventions provided multi‐modality components including exercise, nutrition and psychoeducational aspects. Prehabilitation improved gait, cardiopulmonary function, urinary continence, lung function and mood 30 days post‐treatment but was not consistent across studies.
When combined with rehabilitation, greater benefits were seen in 30‐day gait and physical functioning compared to prehabilitation alone. Large‐scale randomised studies are required to translate what is already known from feasibility studies to improve overall health and increase long‐term cancer patient outcomes.
PURPOSE: The concept of providing personalised care plans for cancer survivors is receiving increasing attention; a recognised element of a care plan is to provide an indication of the risks and consequences of treatment. This paper reports health care professional (HCP) response to providing cancer survivors with information on potential late effects of their cancer treatment. METHODS: Eighteen HCPs from five cancer centres and three general practices in the UK completed semi-structured interviews which were digitally recorded, transcribed and qualitatively analysed using framework analysis. RESULTS: HCPs' view of health care was that it is currently focused on acute care and needs are responded to as they may arise, including those which are late effects of cancer treatments. The concept of pre-empting a discussion of potential late effects during the survivorship phase was felt to be discordant with this approach and could impact on adjustment to life after cancer treatment. CONCLUSION: Providing cancer survivors with information on potential late effects requires further consideration. Evidence for survivor preference for late effect information and the benefit afforded to survivors who receive it could inform the practice of HCPs. If a culture of proactivity is to be encouraged regarding discussions of future potential risk, HCPs may need support in considering ways of presenting survivors with reality whilst being mindful of their need to retain hope during the survivorship phase.
This study reviewed the confidence and perceived skills of complementary and alternative medicine (CAM) practitioners in providing care and symptom management for clients post cancer. An e-survey was mailed to approximately 21 000 CAM practitioners, targeted at those working with clients who were experiencing consequences of cancer and its treatments. Questions were asked about the main symptoms and concerns of clients, the confidence and current skill levels of practitioners and additional training requirements. Six hundred and twelve practitioners responded to the survey, 507 of whom were working with individuals experiencing the consequences of cancer and its treatments. Forty-five per cent (n = 134) had undertaken training in cancer prior to working with cancer patients, 61% (n = 182) had undertaken courses or study days relative to cancer care in the past two years. The most often treated symptoms or concerns of patients were those of a psychosocial nature, pain management and lymphoedema. CAM practitioners with limited knowledge and training are providing support to cancer survivors, particularly in services where the National Health Service has limited provision. CAM practitioners may fulfil a future role in providing long-term support for cancer survivors; however, in order to properly safeguard patients they are in need of further training and development.
D Fenlon, S Faithfull, D Greenfield, G Knowles, K Robb, K Roberts, G Taylor, M Wells, I White, T Wiseman (2011)Ten Top Tips for Cancer Survivorship: a Prompt for Cancer Patients at the End of Their Primary Treatment, In: EUROPEAN JOURNAL OF CANCER47pp. S238-S238
BACKGROUND: Malignant fungating wounds may have significant physiological, psychological and emotional consequences on patients and their families. This study focuses on understanding the lived experiences of patients with a malignant fungating breast wound and their informal carers. METHOD: The methodological framework of interpretative phenomenological approach according to Heidegger was used. Nine patients were interviewed from January until November 2009. RESULTS: The results demonstrate that most of the patients and their informal carers were on their own while struggling with the erosion of their physical boundaries. The women report a lack of information and advice about how to manage the wound as well as the physical and social limitations imposed on them because of copious wound exudate, odour and bleeding. The women used many different methods and approaches to maintain the boundedness of the body. CONCLUSION: This study contributes to understanding that losing control over the body meant for the women losing control over themselves and their lives. The unboundedness was demonstrated through the symptom experiences. Therefore the care of women needs strategies that are integrated in a palliative, holistic, empathic approach. In particular skills for palliative wound care among medical and nursing staff need to be developed as the women and their carers report a lack of information and advice about how to manage the wound as well as the physical limitations and psychosocial consequences of struggling to maintain the boundedness of the body.
D Fenlon, J Armes, N Doyle, S Faithfull, D Greenfield, G Knowles, K Robb, K Roberts, C Taylor, M Wells (2011)CCAT: a UK Initiative to Address the Consequences of Cancer Treatment Through Research, Influence and Practice Development, In: EUROPEAN JOURNAL OF CANCER47pp. S224-S225
Formal cancer survivorship care is a growing focus internationally. This article provides a broad overview of the national strategies currently in progress for the development of survivorship programs and care plans within the United States and across Europe. The different approaches taken in their implementation, staffing, and clinical focus are highlighted, with an emphasis on how they are incorporated into various models of care. The considerable variation in making survivorship a formal period of care across countries and health care systems is discussed, including the factors influencing these differences. A review of research focused on the evaluation of definitions and outcomes is provided along with a discussion of important areas requiring future research. Cancer 2013;119(11 suppl):2179-86. © 2013 American Cancer Society.
E Watson, B Shinkins, L Matheson, R Burns, E Frith, D Neal, F Hamdy, F Walter, D Weller, C Wilkinson, Sara Faithfull, P Sooriakumaran, C Kastner, C Campbell, R Neal, H Butcher, M Matthews, R Perera, J Wolstenholme, P Rose (2017)Supporting prostate cancer survivors in primary care: Findings from a pilot trial of a nurse-led psycho-educational intervention (PROSPECTIV), In: European Journal of Oncology Nursing32pp. 73-81
This study sought to test the acceptability and feasibility of a nurse-led psycho-educational intervention (NLPI) delivered in primary care to prostate cancer survivors, and to provide preliminary estimates of the effectiveness of the intervention. Methods:
Men who reported an ongoing problem with urinary, bowel, sexual or hormone-related functioning/ vitality on a self-completion questionnaire were invited to participate. Participants were randomly assigned to the NLPI plus usual care, or to usual care alone. Recruitment and retention rates were assessed. Prostate-related quality of life, self-efficacy, unmet needs, and psychological morbidity were measured at baseline and 9 months. Health-care resource use data was also collected. An integrated qualitative study assessed experiences of the intervention. Results:
61% eligible men (83/136) participated in the trial, with an 87% (72/83) completion rate. Interviews indicated that the intervention filled an important gap in care following treatment completion, helping men to self-manage, and improving their sense of well-being. However, only a small reduction in unmet needs and small improvement in self-efficacy was observed, and no difference in prostate-related quality of life or psychological morbidity. Patients receiving the NLPI recorded more primary care visits, while the usual care group recorded more secondary care visits. Most men (70%; (21/30)) felt the optimal time for the intervention was around the time of diagnosis/before the end of treatment. Conclusions:
Findings suggest a nurse-led psycho-educational intervention in primary care is feasible, acceptable and potentially useful to prostate cancer survivors.
Rates of cancer survival have increased in recent decades due to earlier diagnosis and improved therapies, but a longer life span does not necessarily equate to a healthier life. Chronic illness as a consequence of cancer and its treatment is reported in a significant proportion of survivors. An increased risk of cardiovascular diseases, such as myocardial infarction, stroke and heart failure. Is one of the side effects of some cancer therapies. Nurses in oncology and primary care can minimise cardiovascular risks by improving people’s awareness of symptoms, conducting health assessment and appropriate referrals. Secondary prevention through lifestyle advice, smoking cessation and obesity reduction is also essential. This should be in combination with more detailed cardiac assessment for those high-risk groups at all stages of the patient pathway. Appropriate risk management and early detection of heart problems can prevent long term illness and reduce multimorbidity for people living with and beyond cancer.
Switching patients from intravenous 5-FU/LV to oral capecitabine (Xeloda) for the treatment of metastatic colorectal cancer is associated with a reduction in the need for hospitalisations to manage 5-FU-associated delivery and complications, with resulting healthcare savings. However, implementing oral therapy with capecitabine within a cancer centre in the UK has required a considerable change in attitude within healthcare services. The resulting need for patients to take an active role in their treatment, and the co-ordination and monitoring of such a service at home has raised issues for chemotherapy services. To enhance patient involvement and compliance with medication a patient guide was developed to educate, and support individuals and enable them to understand the rationale for treatment and when to seek help. In addition, patients are encouraged to monitor and record symptoms in a diary. This change in service focus has required an investment in time educating and informing patients, community health workers and hospital practitioners. This change has been co-ordinated through the chemotherapy outpatient clinic. Effective communication between hospital and home has been important in implementing oral chemotherapy. While the initial challenge of monitoring and educating patients receiving capecitabine has been met, the Primary Care team and cancer centre need to continue to assess side effects and patient compliance in order to improve knowledge of capecitabine among healthcare professionals and ensure safe practice.
Providing care in the home is very demanding, particularly where people with a primary malignant brain tumour (PMBT) are concerned, as there are physical, cognitive and behavioural alterations that can make significant demands on family caregivers. The aim of this article is to consider carers' access to information following diagnosis of a PMBT and information on managing the caring role. A grounded theory approach was used with 22 open-ended interviews carried out with active carers at the time of the interview. Carers identified a lack of attention to their need for information regarding medication, caring and working and becoming a carer. They develop strategies such as using the Internet to search for information and support and using friends to filter information so they are not overwhelmed with depressing infromation. Using these strategies carers reduce uncertainty, alleviate stress and find a way to continue to hope. Carers lack information on how to access information at different stages of the caring journey. However, they are resourceful in finding support and information and expect health services to include and signpost them to the most appropriate sources of information.
Introducing service delivery changes is rarely straightforward and requires careful planning. This paper reports on the work involved in preparing for, and implementing, an oral chemotherapy programme to be delivered on an outpatient basis. It outlines the involvement of both hospital and community staff and stresses the importance of providing patients with information.
Elderly people form a large proportion of cancer patients. This has implications for cancer care, in that age is a substantial risk factor in developing cancer. In spite of efforts to reduce cancer mortality through health education and screening, cancer rates are likely to increase in proportion to the ageing population. It has been suggested that health care professionals generally view elderly people in a negative fashion, which influences the care that these individuals receive. At present, there is a scarcity of information on the nature of cancer in elderly people, their tolerance to cytotoxic treatment, and specific age-related problems. Knowledge in all these areas remains fragmented and the research data conflicting. The nurse plays an important role in assessing and monitoring the impact of cytotoxic chemotherapy treatment. It is, therefore, imperative for cancer nurses to develop specialist knowledge in this area to enable them to understand the effect cytotoxic chemotherapy treatments have on elderly people.
The research uses a grounded theory methodology involving 22 in-depth qualitative interviews with informal carers. The principle of constant comparison was used to analyse the data, resulting in the generation of six themes. The findings identify the carers’ journey as an emotional and psychosocial experience that is at times completely shocking, baffling, overwhelming but also rewarding. Although the concept of a ‘journey’ is displayed in a linear fashion the journey is circuitous rather than linear and different milestones in the journey may be visited and re-visited at critical moments during the caring career. Six themes are identified, which are grounded in the data namely: getting the diagnosis and the realisation of what is involved; preparing oneself and gaining knowledge about PMBT by gathering information; enlisting emotional and practical support to sustain them on their journey; adapting to the changes in the person being cared for that cause changes in the caring role; surviving and managing, and strategies of coping.
Purpose: To identify symptom clusters and predisposing factors associated with long-term symptoms and health-related quality of life (HRQOL) following radiotherapy in men with prostate cancer. Methods: Patient-reported outcomes (PROs) data from the Medical Research Council RT01 radiotherapy with neoadjuvant androgen deprivation therapy (ADT) trial of 843 patients were used. PROs were collected over 5 years with the University of California, Los Angeles Prostate Cancer Index (UCLA-PCI) and the 36-Item Short-Form Health Survey (SF-36). Symptom clusters were explored using hierarchical cluster analysis (HCA). The association of treatment dose, baseline patient characteristics and early symptom clusters with the change in severity of PROs over three years was investigated with multivariate linear mixed effects models. Results: Seven symptom clusters of three or more symptoms were identified. The clusters were stable over time. The longitudinal profiles of symptom clusters showed the onset of acute symptoms during treatment for all symptom clusters and significant recovery by six months. Some clusters such as Physical Health and Sexual Function were adversely affected more than others by ADT, and were less likely to return to pre-treatment levels over time. Older age was significantly associated with decreased long-term Physical Function, Physical Health and Sexual Function (p<0.001). Both baseline and acute symptom clusters were significant antecedents for impaired function and HRQOL at three years. Conclusions: Men with poorer physical function and health prior to or during treatment were more likely to report poorer PROs at year three. Early assessment using PROs and lifestyle interventions should be employed to identify those with higher needs and provide targeted rehabilitation and symptom management.
Agnieszka Lemanska, Rachel C. Byford, Clare Cruickshank, David P. Dearnaley, Filipa Ferreira, Clare Griffin, Emma Hall, William Hinton, Simon de Lusignan, Julian Sherlock, Sara Faithfull (2020)Linkage of the CHHiP randomised controlled trial with primary care data: a study investigating ways of supplementing cancer trials and improving evidence-based practice, In: BMC Medical Research Methodology20(198)
Background Randomised controlled trials (RCTs) are the gold standard for evidence-based practice. However, RCTs can have limitations. For example, translation of findings into practice can be limited by design features, such as inclusion criteria, not accurately reflecting clinical populations. In addition, it is expensive to recruit and follow-up participants in RCTs. Linkage with routinely collected data could offer a cost-effective way to enhance the conduct and generalisability of RCTs. The aim of this study is to investigate how primary care data can support RCTs. Methods Secondary analysis following linkage of two datasets: 1) multicentre CHHiP radiotherapy trial (ISRCTN97182923) and 2) primary care database from the Royal College of General Practitioners Research and Surveillance Centre. Comorbidities and medications recorded in CHHiP at baseline, and radiotherapy-related toxicity recorded in CHHiP over time were compared with primary care records. The association of comorbidities and medications with toxicity was analysed with mixed-effects logistic regression. Results Primary care records were extracted for 106 out of 2811 CHHiP participants recruited from sites in England (median age 70, range 44 to 82). Complementary information included longitudinal body mass index, blood pressure and cholesterol, as well as baseline smoking and alcohol usage but was limited by the considerable missing data. In the linked sample, 9 (8%) participants were recorded in CHHiP as having a history of diabetes and 38 (36%) hypertension, whereas primary care records indicated incidence prior to trial entry of 11 (10%) and 40 (38%) respectively. Concomitant medications were not collected in CHHiP but available in primary care records. This indicated that 44 (41.5%) men took aspirin, 65 (61.3%) statins, 14 (13.2%) metformin and 46 (43.4%) phosphodiesterase-5-inhibitors at some point before or after trial entry. Conclusions We provide a set of recommendations on linkage and supplementation of trials. Data recorded in primary care are a rich resource and linkage could provide near real-time information to supplement trials and an efficient and cost-effective mechanism for long-term follow-up. In addition, standardised primary care data extracts could form part of RCT recruitment and conduct. However, this is at present limited by the variable quality and fragmentation of primary care data.
E-technology is increasingly used in oncology to obtain self-reported symptom assessment information from patients, although its potential to provide a clinical monitoring tool in palliative care is relatively unexplored in the UK. This study aimed to evaluate the support provided to lung cancer patients post palliative radiotherapy using a computerized assessment tool and to determine the clinical acceptability of the tool in a palliative care setting. However, of the 17 clinicians identified as managing patients who met the initial eligibility criteria for the study, only one clinician gave approval for their patient to be contacted regarding participation, therefore the benefits of this novel technology could not be assessed. Thirteen key clinicians from the centres involved in the study were subsequently interviewed. They acknowledged potential benefits of incorporating computerized patient assessment from both a patient and practice perspective, but emphasized the importance of clinical intuition over standardized assessment. Although clinicians were positive about palliative care patients participating in research, they felt that this population of patients were normally too old, with too rapidly deteriorating a condition to participate in a study using e-technology. In order to encourage acceptance of e-technology within palliative care, emphasis is needed on actively promoting the contribution of technologies with the potential to improve patient outcomes and the patient experience.
Agnieszka Lemanska, Sara Faithfull, Harshana Liyanage, Sophie Otter, Marina Romanchikova, Julian Sherlock, Nadia Smith, Spencer Thomas, Simon de Lusignan Primary Care Prostate Cancer Case Ascertainment, In: Studies in health technology and informatics270pp. 1369-1370
Although routine healthcare data are not collected for research, they are increasingly used in epidemiology and are key real-world evidence for improving healthcare. This study presents a method to identify prostate cancer cases from a large English primary care database. 19,619 (1.3%) men had a code for prostate cancer diagnosis. Codes for medium and high Gleason grading enabled identification of additional 94 (0.5%) cases. Many studies do not report codes used to identify patients, and if published, the lists of codes differ from study to study. This can lead to poor research reproducibility and hinder validation. This work demonstrates that carefully developed comprehensive lists of clinical codes can be used to identify prostate cancer; and that approaches that do not solely rely on clinical codes such as ontologies or data linkage should also be considered.
The aim of this study was to explore TT men’s pre-diagnosis experiences of prostate cancer (PCa). This study is part of a wider project that examined men and their partners’ experiences of routes to diagnosis for PCa in TT.
Men (n=51) were voluntarily recruited to semi-structured interviews from four centres. Data were analysed following principles of Grounded Theory.
Major barriers to medical help-seeking were highlighted as lack of knowledge and awareness of the prostate gland and symptoms of PCa, the digital rectal exam (DRE), PSA, cultural and religious beliefs and hegemonic masculinity norms and non-reporting of bodily changes to GPs. Fear of DRE, distrust in providers and misinterpretation of bodily changes as related to ageing and diabetes mellitus also contributed to delays towards seeking medical help. Men’s interactions with pharmacists and traditional healers lengthened the time taken to consult with Health Care Providers for prostate concerns.
TT men’s PCa pre-diagnosis experiences are important to unearth barriers and facilitators to care along routes to diagnosis for this disease. This can help target specific health promotion strategies to motivate men to seek medical care for symptoms in a timely manner.
Objectives: To estimate the proportion of cancer outpatients who visit a Complementary and Alternative Medicine (CAM) unit that is located within a conventional cancer treatment centre; to compare the characteristics of CAM unit visitors with those of all outpatients; to monitor the demand for 20 CAM therapies delivered by professionals, and the use of the CAM unit for waiting, gathering information and informal support from volunteer staff. Design: Prospective, observational, over a six month period. Setting: CAM unit within a NHS cancer treatment centre. Main outcome measures: Utilisation of the CAM unit for 20 complementary therapies, and for waiting, gathering information, informal support; characteristics of CAM users compared with those of all cancer outpatients attending the cancer centre; predictors of CAM therapy use and frequent use. Results: 761 (95% of those approached) people were recruited, 498 (65.4%) cancer patients, 202 (26.5%) relatives, 37 (4.8%) friends/carers, 24 (3.2%) staff. Women predominated (n = 560, 73.6%). Of all outpatients attending the cancer centre, 498 (15.8%) visited the CAM unit, 290 (9.2%) accessed therapies. Compared to all outpatients, those visiting the CAM unit were: younger (mean 63.7 vs. 58.4 years), more likely to be female (57.9% vs. 78.7%), have breast (14.8% vs. 51.9%), gynaecotogical (5.0% vs. 9.1%) cancer, live in local postal district (57.3% vs. 61.6%). Significant predictors of therapy use and frequent visits were being a patient, female, higher education, living closer to the cancer centre. Conclusions: Despite easy access to CAM therapies, a relatively small number of people regularly used them, whilst a larger number selectively tried a few. The integrated CAM unit meets a demand for information and informal support. The findings inform emerging policy on integrating CAM and conventional cancer treatment to address psychosocial needs of people with cancer. More research is needed on why people do not use integrated CAM services and how charges affect demand. (C) 2008 Published by Elsevier Ltd.
JM Chan, RU Newton, SN Culos-Reed, S Faithfull, S Lambert, SA Kenfield, E Van Blarigan, KS Lyons, J Ramsdill, A Zahavich, L Duncan, N Hart, M Dew, EL Moe, C Dixon, KM Winters-Stone (2016)An international, population-level initiative to promote healthy lifestyle practices among prostate cancer survivors., In: JOURNAL OF CLINICAL ONCOLOGY34(3)
Patient-reported outcome measures (PROMs) are a useful way of recording patient perceptions of the impact of their cancer and the consequences of treatment. Understanding the impact of radiotherapy longer term requires tools that are sensitive to change but also meaningful for patients. PROMs are useful in defining symptom severity but also the burden of illness for cancer patients. Patient-reported outcomes are increasingly being seen as a way to improve practice by enhancing communication, improving symptom management as well as identifying patient care needs. This paper provides an overview of the use of PROMs in radiotherapy and considerations for tool choice, analysis and the logistics of routine data collection. Consistent assessment is essential to detect patient problems as a result of radiotherapy, but also to address emerging symptoms promptly.
Assessing fitness and promoting regular physical activity can improve health outcomes and early recovery in prostate cancer. This is however, underutilised in clinical practice. The cardiopulmonary exercise test (CPET) is increasingly being used pre-treatment to measure aerobic capacity and peak oxygen consumption (VO2peak - a gold standard in cardiopulmonary fitness assessment). However, CPET requires expensive equipment and may not always be appropriate. The Siconolfi step test (SST) is simpler and cheaper, and could provide an alternative.
The aim of this study was to evaluate the validity and reliability of SST for predicting cardiopulmonary fitness in men with prostate cancer. Men were recruited to this two-centre study (Surrey and Newcastle, United Kingdom) after treatment for locally advanced prostate cancer. They had one or more of three risk factors: elevated blood pressure, overweight (BMI ˃ 25), or androgen deprivation therapy (ADT). Cardiopulmonary fitness was measured using SST and cycle ergometry CPET, at two visits three months apart. The validity of SST was assessed by comparing it to CPET. The VO2peak predicted from SST was compared to the VO2peak directly measured with CPET. The reliability of SST was assessed by comparing repeated measures. Bland-Altman analysis was used to derive limits of agreement in validity and reliability analysis.
Sixty-six men provided data for both SST and CPET. These data were used for validity analysis. 56 men provided SST data on both visits. These data were used for reliability analysis. SST provided valid prediction of the cardiopulmonary fitness in men ˃ 60 years old. The average difference between CPET and SST was 0.64 ml/kg/min with non-significant positive bias towards CPET (P = 0.217). Bland-Altman 95% limits of agreement of SST with CPET were ± 7.62 ml/kg/min. SST was reliable across the whole age range. Predicted VO2peak was on average 0.53 ml/kg/min higher at Visit 2 than at Visit 1 (P = 0.181). Bland-Altman 95% limits of agreement between repeated SST measures were ± 5.84 ml/kg/min.
SST provides a valid and reliable alternative to CPET for the assessment of cardiopulmonary fitness in older men with prostate cancer. Caution is advised when assessing men 60 years old or younger because the VO2peak predicted with SST was significantly lower than that measured with CPET.
Neurodegenerative diseases (NDDs) are incurable and debilitating, and result in progressive deterioration of cognitive (dementias) and physical (ataxias) functioning. People with these conditions have constantly changing needs due to steady deterioration, with episodes of rapid decline,1,2 which places a heavy burden both on patients and their carers. Greater emphasis is now placed on keeping patients in their own homes in order to meet their personal wishes and reduce hospital/institutional costs.3,4 Respite can offer several avenues of support including rehabilitation, maximisation of functionality and improved quality of life for the patient. It can also be crucial in enabling carers to continue in their caring roles.
J Cockle-Hearne, F Charnay-Sonnek, L Denis, HE Fairbanks, D Kelly, S Kav, K Leonard, E van Muilekom, P Fernandez-Ortega, BT Jensen, S Faithfull (2013)The impact of supportive nursing care on the needs of men with prostate cancer: a study across seven European countries., In: British Journal of Cancer109(8)pp. 2121-2130
Cancer Research UK
Background:Prostate cancer is for many men a chronic disease with a long life expectancy after treatment. The impact of prostate cancer therapy on men has been well defined, however, explanation of the consequences of cancer treatment has not been modelled against the wider variables of long-term health-care provision. The aim of this study was to explore the parameters of unmet supportive care needs in men with prostate cancer in relation to the experience of nursing care.Methods:A survey was conducted among a volunteer sample of 1001 men with prostate cancer living in seven European countries.Results:At the time of the survey, 81% of the men had some unmet supportive care needs including psychological, sexual and health system and information needs. Logistic regression indicated that lack of post-treatment nursing care significantly predicted unmet need. Critically, men's contact with nurses and/or receipt of advice and support from nurses, for several different aspects of nursing care significantly had an impact on men's outcomes.Conclusion:Unmet need is related not only to disease and treatment factors but is also associated with the supportive care men received. Imperative to improving men's treatment outcomes is to also consider the access to nursing and the components of supportive care provided, especially after therapy.
Katri Vehviläinen-Julkunen, Saija Turpeinen, Tarja Kvist, Margaretha Ryden-Kortelainen, Siiri Nelimarkka, Shirin Enshaeifar, Sara Faithfull (2020)Experience of Ambulatory Cancer Care, In: Cancer NursingPublis
Lippincott, Williams & Wilkins
Background: The move of cancer treatment into the outpatient setting can impact patient experience. Understanding how service delivery change impacts different people requires service feedback to inform future delivery development. The use of patient experience questionnaires often generates large amount of free-text data that are difficult to analyze. Objective: The aim of this study was to describe a proof-of-concept study exploring the experiences and perceptions of people undergoing cancer treatment, using novel analysis techniques to provide rapid free-text data analysis. Method: This was a mixed-methods qualitative analysis from qualitative questions gathered in Finland using the National Cancer Patient Experience Survey (n = 92 of 208 patients) and supplemented with 7 focus groups (31 people with cancer). Data were analyzed using natural language processing, via an automated sentiment analysis algorithm and supported with focus groups to inform the initial thematic analysis. Results: Participants were on average 65 years of age. Of the 196 free-text comments, 121 (73.6%) were positive about patient experiences and 75 (38.5%) negative with suggestions for improvement. Conclusion: Communication between patients and clinicians was an indicator of quality, and lack of psychological support was a barrier to quality care provision. The methodology of using sentiment analysis for free content to review quality was demonstrated through this study as a novel and feasible method to look at large-scale qualitative data. Implications for practice: Using the free content on experience of care questionnaire to review gaps or needs in services is valuable in developing future practice.
Education is an important tool in the development of specialist nursing within Europe. Awareness of cancer and its treatment and the impact it has on individuals and families helps in reducing negative perceptions and fatalistic attitudes. Education not only improves care, but can enhance outcomes; research studies have identified that appropriate and timely nursing can make a difference. There are several drivers for change within cancer nurse education. First, the increasing complexity of cancer treatment delivery plus the shift of cancer therapy and support into community and ambulatory settings are demanding wider skills. Second, the implementation of the Bologna Process across Europe aiming to make study programs compatible and comparable to facilitate transparency and academic recognition at a European level. As a result of the Bologna declaration, educational systems in most European countries are in the process of reform. These changes are an opportunity for cancer nursing to establish and constitute a starting point for providing a commonality of curricula for cancer nurses across Europe.
Androgen deprivation therapy (ADT) is used widely as part of a combined modality for the treatment of prostate cancer. However, ADT has also been associated with the development of cardiometabolic complications that can increase mortality from cardiovascular events. There is emerging evidence to suggest that ADT-related cardiometabolic risk can be mitigated by diet and lifestyle modification. While the clinical focus for a nutritional approach for achieving this effect is unclear, it may depend upon the timely assessment and targeting of dietary changes to the specific risk phenotype of the patient. The present review aims to address the metabolic origins of ADT-related cardiometabolic risk, existing evidence for the effects of dietary intervention in modifying this risk, and the priorities for future dietary strategies.
Purpose Chemotherapy-induced peripheral neuropathy (CIPN) may persist after treatment ends and may lead to functional decline and falls. This study compared objective and self-report measures of physical function, gait patterns, and falls between women cancer survivors with and without symptoms of CIPN to identify targets for functional rehabilitation. Methods A secondary data analysis of 512 women cancer survivors (age, 62 6 6 years; time since diagnosis, 5.8 6 4.1 years) categorized and compared women self-reporting symptoms of CIPN (CIPN+) with asymptomatic women (CIPN2) on the following: maximal leg strength, timed chair stand, physical function battery, gait characteristics (speed; step number, rate, and length; base of support), selfreport physical function and disability, and falls in the past year. Results After an average of 6 years after treatment, 47% of women still reported symptoms of CIPN. CIPN+ had significantly worse self-report and objectively measured function than did CIPN2, with the exception of maximal leg strength and base of support during a usual walk. Gait was slower among CIPN+, with those women taking significantly more, but slower and shorter, steps than did CIPN2 (all P,.05). CIPN+ reported significantly more disability and 1.8 times the risk of falls compared with CIPN2 (P , .0001). Increasing symptom severity was linearly associated with worsening function, increasing disability, and higher fall risk (all P , .05). Conclusion This work makes a significant contribution toward understanding the functional impact of CIPN symptoms on cancer survivors. Remarkably, 47% of women in our sample had CIPN symptoms many years after treatment, together with worse function, greater disability, and more falls. CIPN must be assessed earlier in the clinical pathway, and strategies to limit symptom progression and to improve function must be included in clinical and survivorship care plans.
Aim: This paper reports a study to develop a grounded theory to explain the experience of recovery following surgery for colorectal cancer. Background. Studies have adopted a biomedical framework to measure quality of life and symptom distress following surgery for colorectal cancer. These studies suggest that symptoms of pain, insomnia and fatigue, may persist for many months following treatment. Fewer studies have considered the individual's experiences and perspective of the emotional, social and cultural aspects of recovery. Methods. A longitudinal study using grounded theory was conducted with 12 individuals, who had received surgery for colorectal cancer. Semi-structured interviews were conducted at four time points over 1year following surgery, between 2007 and 2009. Grounded theory analysis was undertaken using Strauss and Corbin's framework. Findings. Recovery is described in three phases: disrupting the self; repairing the self; restoring the self. The core category is Restoring a sense of wellness; fostered through awareness and enjoyment of the physical, emotional, spiritual and social aspects of life. A sense of wellness exists as a duality with a sense of illness, where both perspectives may co-exist but one usually takes precedence. A sense of illness pervades when the individual is preoccupied with illness and the illness continues to disrupt their daily life. Conclusion. Recovery takes time and energy, particularly when the individual is at home and in relative isolation from health professionals. Opportunities exist for nurses to provide information and support to facilitate the individual in their progress towards achieving a sense of wellness. © 2011 Blackwell Publishing Ltd.
Pernilla Lagergren, Anna Schandl, Neil K Aaronson, Hans‐Olov Adami, Francesco de Lorenzo, Louis Denis, Sara Faithfull, Lifang Liu, Franḉoise Meunier, Cornelia Ulrich Cancer survivorship: an integral part of Europe's research agenda, In: Molecular Oncology
The aim of this study is to investigate the symptom experience, access to supportive care services and rehabilitation of patients with a primary malignant brain tumour (PMBT) and their carers. Methods A case review of 70 patients with a diagnosis of PMBT who received palliative care in five specialist palliative care units between July 2005 and June 2006. The review examined patient’s symptom experience, care issues, access to rehabilitation and access to supportive care services. Results The two most significant issues experienced by patients and identified in the case review were hemiparesis (17%) and cognitive problems (16%). There were a number of care problems concerning safety related to mobility and falls (9%). Symptoms related to fatigue and tiredness were reported infrequently. There was an absence of information relating to the needs of informal carers; however 18% of carers accessed bereavement counselling services following the death of the person they cared for. Conclusion The needs of carers were not found to be routinely documented within the case notes. For some patients referral to specialist palliative care services occur late in the illness trajectory, which means that patients and carers may not be able to access the full range of supportive care services available. Initial assessment of patients should identify the range of support services that both carers and patients are offered; and the uptake and response to services should be documented throughout the illness trajectory.
This study was undertaken to determine the incidence and risk factors related to the occurrence of urinary tract infections (UTIs), post surgery, in women being treated for a gynaecological cancer. A retrospective case analysis of 215 women was conducted using data collected via case review with domains covering known risk factors for the occurrence of urinary infections. Bacteriuria was defined as greater than 10 5 colony-forming units per millilitre. A total of 30.7% of women had a UTI post-operatively. Among these, 75.7% infections were Escherichia coli. Having a catheter in situ for ≤3 days was found to be slightly significant in the formation of a UTI post-operatively (U= 3878, P < 0.05). Having a catheter in situ for ≥7 days was found to be highly significant (χ 2(1) = 6.602, P < 0.01), with an odds ratio of 2.44. A positive correlation was found between the duration of the catheter in situ and type of UTI (τ = .251, P < 0.01). Although urinary catheterisation is known to be related to hospital-acquired infection, a shorter duration of catheterisation may reduce the risk of possible infection post surgery. Oncology teams need to be more aware of this risk, identify women more likely to be catheterised for longer and use preventative strategies for managing infection, such as silver nitrite-lined catheters. © 2011 Blackwell Publishing Ltd.
Purpose: To examine the findings of existing studies in relation to men's cultural beliefs about changes to their bodies relevant to prostate cancer and how these affect interpretation of bodily changes and helpseeking actions.
Method: We undertook a narrative review of studies conducted from 2004 to 2017 in 6 databases that highlighted men's beliefs and help-seeking actions for bodily changes suggestive of prostate cancer.
Results: Eighteen (18) studies reflecting men from various ethnicities and nationalities were included. The belief that blood and painful urination were warning signs to seek medical help delayed helpseeking among men compared to men that did not experience these symptoms. The belief that urinary symptoms such as dribbling, cystitis and urinary hesitancy were transient and related to ageing, normality and infection significantly delayed symptom appraisal and help-seeking. Men also held the belief that sexual changes, such as impotence and ejaculation dysfunction were private, embarrassing and a taboo. These beliefs impeded timely help-seeking. Cultural beliefs, spirituality and the role of wives/partners were significant for men to help appraise symptoms as requiring medical attention thus sanctioning the need for help-seeking.
Conclusions: This review underscores a critical need for further empirical research into men's beliefs about bodily changes relevant to prostate health and how these beliefs affect their interpretation of symptoms and subsequent help-seeking actions.
S Faithfull (2000)Neuro-oncology for nurses, In: INTERNATIONAL JOURNAL OF NURSING STUDIES37(1)pp. 92-92
PERGAMON-ELSEVIER SCIENCE LTD
Much has been written about the need for continuing professional development for nurses to enhance practice and promote quality-nursing care. However, little has been written about the challenges faced by European nurses in keeping up-to-date with health care developments in relation to specialist areas. Educators providing courses are currently facing many challenges; not only the increasing costs of specialist education provision, distance learning, but also the ever increasing changes in health care requiring modification of specialist nursing skills and knowledge within curriculum. This means that educators need to rethink approaches to teaching and learning and links with practice. One of the challenges for the future is how to shift the skills needed for support of cancer patients out into the community , providing quality care for those requiring outpatient and ambulatory cancer care provision. However, continuing professional development is often encouraged as a mechanism for delivering service training rather perceived as developmental for the individual. The European Oncology Nursing Society (EONS) as a society has grasped the initiative for educational development with educational needs analysis, a curriculum identifying practice as central to learning, practice-related topics such as TITAN and the development of education for cancer in older people. There are enormous possibilities opening up within health care for us to develop cancer nursing in many settings and contexts, not only as a result of improved survival and treatments but because vocational education is being scrutinised as part of the Bologna agreement. Lastly, educationalists need to grasp these opportunities and take the initiative and strengthen education for nurses who don't know they need it. Improvements in specialist cancer care are shared and lessons learnt can translate into other nursing services so that we can provide better care for cancer patients throughout their cancer journey.
To assess the feasibility and acceptability of a community pharmacy lifestyle intervention to improve physical activity and cardiovascular health of men with prostate cancer. To refine the intervention.
Phase II feasibility study of a complex intervention.
Nine community pharmacies in the UK.
Community pharmacy teams were trained to deliver a health assessment including fitness, strength and anthropometric measures. A computer algorithm generated a personalised lifestyle prescription for a homebased programme accompanied by supporting resources. The health assessment was repeated 12 weeks later and support phone calls were provided at weeks 1 and 6.
116 men who completed treatment for prostate cancer.
The feasibility and acceptability of the intervention and the delivery model were assessed by evaluating study processes (rate of participant recruitment, consent, retention and adverse events), by analysing delivery data and semi-structured interviews with participants and by focus groups with pharmacy teams. Physical activity (measured with accelerometry at baseline, 3 and 6 months) and patient reported outcomes (activation, dietary intake and quality of life) were evaluated. Change in physical activity was used to inform the sample size calculations for a future trial.
Out of 403 invited men, 172 (43%) responded and 116 (29%) participated. Of these, 99 (85%) completed the intervention and 88 (76%) completed the 6-month follow-up (attrition 24%). Certain components of the intervention were feasible and acceptable (eg, community pharmacy delivery), while others were more challenging (eg, fitness assessment) and will be refined for future studies. By 3 months, moderate to vigorous physical activity increased on average by 34 min (95% CI 6 to 62, p=0.018), but this was not sustained over 6 months.
The community pharmacy intervention was feasible and acceptable. Results are encouraging and warrant a definitive trial to assess the effectiveness of the refined intervention.
Agnieszka Lemanska, Rachel C. Byford, Clare Cruickshank, David P. Deamaley, Filipa Ferreira, Clare Griffin, Emma Hall, William Hinton, Simon de Lusignan, Julian Sherlock, Sara Faithfull (2020)Linkage of the CHHiP randomised controlled trial with primary care data. A study investigating ways of supplementing cancer trials and improving evidence-based practice., In: BMC Medical Research Methodology
Background: Randomised controlled trials (RCTs) are the gold standard for evidence-based practice. However, RCTs can have limitations. For example, translation of findings into practice can be limited by design features, such as inclusion criteria, not accurately reflecting clinical populations. In addition, it is expensive to recruit and follow-up participants in RCTs. Linkage with routinely collected data could offer a cost-effective way to enhance the conduct and generalisability of RCTs. The aim of this study is to investigate how primary care data can support RCTs. Methods: Secondary analysis following linkage of two datasets: 1) multicentre CHHiP radiotherapy trial (ISRCTN97182923) and 2) primary care database from the Royal College of General Practitioners Research and Surveillance Centre. Comorbidities and medications recorded in CHHiP at baseline, and radiotherapy-related toxicity recorded in CHHiP over time were compared with primary care records. The association of comorbidities and medications with toxicity was analysed with mixed-effects logistic regression. Results: Primary care records were extracted for 106 out of 2811 CHHiP participants recruited from sites in England (median age 70, range 44 to 82). Complementary information included longitudinal body mass index, blood pressure and cholesterol, as well as baseline smoking and alcohol usage but was limited by the considerable missing data. In the linked sample, 9 (8%) participants were recorded in CHHiP as having a history of diabetes and 38 (36%) hypertension, whereas primary care records indicated incidence prior to trial entry of 11 (10%) and 40 (38%) respectively. Concomitant medications were not collected in CHHiP but available in primary care records. This indicated that 44 (41.5%) men took aspirin, 65 (61.3%) statins, 14 (13.2%) metformin and 46 (43.4%) phosphodiesterase-5-inhibitors at some point before or after trial entry. Conclusions: People develop new comorbidities and commence medications after enrolment to trials. Data recorded in primary care are a rich resource and linkage could provide near real-time information to supplement trials and an efficient and cost-effective mechanism for long-term follow-up. In addition, standardised primary care data extracts could form part of RCT recruitment and conduct. However, this is at present limited by the variable quality and fragmentation of primary care data.
Background and objective: Despite significant progress in prostate cancer research over the last two decades, screening of the disease has remained controversial.From a socio-epidemiological perspective, little is known of patients' beliefs about their illness and why they often delay in seeking diagnosis.The purpose of this qualitative study was to understand the experiences and perceptions of men about the early detection of prostate cancer. Method: This study used a grounded theory approach incorporating the theoretical perspective of social constructionism. A purposive sampling of twelvemen from public and private sector hospitals who had received therapy were interviewed face to face in Persian using a semi-structured interview guide. Interviews were audio taped, then transcribed in full, translated into English by the investigator, and analysed usingMAXqda software. Results: The valuemenaccorded to early detection of prostate cancer was found to be conditional upon their beliefs of prostate illness and their experiences about cure. There was a lack of information about the early detection process. The men felt that medical intervention was focused on the biological aspects, ignoring the needs of the psychosocial concerns. The men were not expecting to have symptoms because of prostate treatment; this influenced their subsequent decision-making. Conclusion: Given men's perceptions and experiences of the illness, screening of prostate cancer seems to have wider implications. The findings suggest that early detection of the disease in Iran may need a screening model that incorporates both biomedical and psychosocial aspects. © EuroJournals Publishing, Inc. 2010.
Purpose: This study reports an innovative theory-driven approach for developing filmed peer support for cancer self-management. Peer support conventionally includes empathetic interaction between people with shared experiences. This unique study considers how to authentically communicate peer empathy in a one-way film narrative. Methods: We co-created a film based on phenomenological interviews with seven men who had volunteered to support other men by sharing their experiences of coping with prostate cancer. The film contributed to successful engagement with self-management. Interpretative Phenomenological Analysis of the interview data was conducted to explore the components of experiential empathy that the men had communicated. Results: Four themes were identified illustrating what men wanted other men to know about coping with prostate cancer: Going into the unknown, it was difficult but I got through highlighted trauma and the importance of having a determined attitude; Only you can do it illustrated the triumph of their journey and of regaining control; I haven’t changed massively reflected the importance of a constant self; and Stay involved represented the overriding need to remain part of pre-cancer social environments. Conclusions: We propose a construct framework of experiential empathy for men with prostate cancer: Resilience, Regaining Control, Continuity-of-Self and Social Connectedness. Filmed peer support that communicates these constructs will offer wide-ranging benefit to meet the needs of this group of men in both e-health and face-to-face self-management contexts. Further research could develop this theory-driven approach to filmed peer support for other cancer groups.
It is well established that exercise and lifestyle behaviours improve men's health outcomes from prostate cancer. With 3.8 million men living with the disease worldwide, the challenge is creating accessible intervention approaches that lead to sustainable lifestyle changes. We carried out a phase II feasibility study of a lifestyle intervention delivered by nine community pharmacies in the United Kingdom to inform a larger efficacy study. Qualitative interviews explored how men experienced the intervention, and these data are presented here.
Community pharmacies delivered a multicomponent lifestyle intervention to 116 men with prostate cancer. The intervention included a health, strength, and fitness assessment, immediate feedback, lifestyle prescription with telephone support, and reassessment 12 weeks later. Three months after receiving the intervention, 33 participants took part in semistructured telephone interviews.
Our framework analysis identified how a teachable moment can be created by a community pharmacy intervention. There was evidence of this when men's self‐perception was challenged and coupled to a positive interaction with a pharmacist. Our findings highlight the social context of behaviour change with men identifying how their lifestyle choices were negotiated within their household. There was a ripple effect as lifestyle behaviours made a positive impact on friends and family.
The teachable moment is not a serendipitous opportunity but can be created by an intervention. Our study adds insight into how community pharmacists can support cancer survivors to make positive lifestyle behaviour changes and suggests a role for doing rather than just telling.
The fatigue that may accompany or follow radiotherapy is often overlooked by health-care staff, yet this side-effect of treatment can cause great distress. More research into the causes and methods of relieving such symptoms is needed.
This book looks at the often debilitating consequences for individuals undergoing radiation therapy and the associated problems for health care professionals ...
Patient reported outcome measures (PROMs) are increasingly being used in research to explore experiences of cancer survivors. Techniques to predict symptoms, with the aim of providing triage care, rely on the ability to analyse trends in symptoms or quality of life and at present are limited. The secondary analysis in this study uses a statistical method involving the application of autoregression (AR) to PROMs in order to predict symptom intensity following radiotherapy, and to explore its feasibility as an analytical tool. The technique is demonstrated using an existing dataset of 94 prostate cancer patients who completed a validated battery of PROMs over time. In addition the relationship between symptoms was investigated and symptom clusters were identified to determine their value in assisting predictive modeling. Three symptom clusters, namely urinary, gastrointestinal and emotional were identified. The study indicates that incorporating symptom clustering into predictive modeling helps to identify the most informative predictor variables. The analysis also showed that the degree of rise of symptom intensity during radiotherapy has the ability to predict later radiotherapy-related symptoms. The method was most successful for the prediction of urinary and gastrointestinal symptoms. Quantitative or qualitative prediction was possible on different symptoms. The application of this technique to predict radiotherapy outcomes could lead to increased use of PROMs within clinical practice. This in turn would contribute to improvements in both patient care after radiotherapy and also strategies to prevent side effects. In order to further evaluate the predictive ability of the approach, the analysis of a larger dataset with a longer follow up was identified as the next step.
Background: Distress after prostate cancer treatment is a substantial burden for up to one-third of men diagnosed. Physical and emotional symptoms and health service use can intensify, yet men are reticent to accept support. To provide accessible support that can be cost effectively integrated into care pathways, we developed a unique, Web-based, self-guided, cognitive-behavior program incorporating filmed and interactive peer support. Objective: To assess feasibility of the intervention among men experiencing distress after prostate cancer treatment. Demand, acceptability, change in distress and self-efficacy, and challenges for implementation in clinical practice were measured. Methods: A pre-post, within-participant comparison, mixed-methods research design was followed. Phase I and II were conducted in primary care psychological service and secondary care cancer service, respectively. Men received clinician-generated postal invitations: phase I, 432 men diagnosed <5 years; phase II, 606 men diagnosed <3.5 years. Consent was Web-based. Men with mild and moderate distress were enrolled. Web-based assessment included demographic, disease, treatment characteristics; distress (General Health Questionnaire-28); depression (Patient Health Questionnaire-9); anxiety (General Anxiety Disorder Scale-7); self-efficacy (Self-Efficacy for Symptom Control Inventory); satisfaction (author-generated, Likert-type questionnaire). Uptake and adherence were assessed with reference to the persuasive systems design model. Telephone interviews explored participant experience (phase II, n=10); interviews with health care professionals (n=3) explored implementation issues. Results: A total of 135 men consented (phase I, 61/432, 14.1%; phase II, 74/606, 12.2%); from 96 eligible men screened for distress, 32% (30/96) entered the intervention (phase I, n=10; phase II, n=20). Twenty-four completed the Web-based program and assessments (phase I, n=8; phase II, n=16). Adherence for phase I and II was module completion rate 63% (mean 2.5, SD 1.9) versus 92% (mean 3.7, SD 1.0); rate of completing cognitive behavior therapy exercises 77% (mean 16.1, SD 6.2) versus 88% (mean 18.6, SD 3.9). Chat room activity occurred among 63% (5/8) and 75% (12/16) of men, respectively. In phase I, 75% (6/8) of men viewed all the films; in phase II, the total number of unique views weekly was 16, 11, 11, and 10, respectively. The phase II mood diary was completed by 100% (16/16) of men. Satisfaction was high for the program and films. Limited efficacy testing indicated improvement in distress baseline to post intervention: phase I, P=.03, r=−.55; phase II, P=.001, r=−.59. Self-efficacy improved for coping P=.02, r=−.41. Service assessment confirmed ease of assimilation into clinical practice and clarified health care practitioner roles. Conclusions: The Web-based program is acceptable and innovative in clinical practice. It was endorsed by patients and has potential to positively impact the experience of men with distress after prostate cancer treatment. It can potentially be delivered in a stepped model of psychological support in primary or secondary care. Feasibility evidence is compelling, supporting further evaluative research to determine clinical and cost effectiveness.
Randomized trials are often considered a poor method for study of cancer nursing issues because of the positivist approach of this method and the size and scale required for experimental studies. However, this method of research is highly valued in health-care evaluations and can provide detailed information on treatment or intervention comparisons. As many cancer nursing interventions are untested it is important that we are able to utilize research methods appropriately to identify care that is of benefit to patients. This article explores some of the advantages and difficulties that can be encountered when undertaking a randomized trial and reflects on the practical implications that such a method can entail. Radiotherapy nursing and interventions for radiotherapy side effects are an area that has been long neglected by researchers. The care of patients and the monitoring for side effects often reflect tradition rather than evidence-based practice. Which health care practitioner should take responsibility for that care or have the necessary skill for managing patient problems is rarely questioned. A randomized trial was used as a method to evaluate the effectiveness of a nursing intervention in comparison to that of conventional medical care. The advantages and disadvantages of this research approach are explored although data are not explored in depth. © 1999 Harcourt Publishers Ltd.
Purpose: To investigate the role of symptom clusters in the analysis and utilisation of Patient-Reported Outcome Measures (PROMs) for data modelling and clinical practice. To compare symptom clusters with scales, and explore their value in PROMs interpretation and symptom management. Methods: A dataset called RT01 (ISCRTN47772397) of 843 prostate cancer patients was used. PROMs were reported with the University of California, Los Angeles Prostate Cancer Index (UCLA-PCI). Symptom clusters were explored with hierarchical cluster analysis (HCA) and average linkage method (correlation >0.6). The reliability of the Urinary Function Scale was evaluated with Cronbach's Alpha. The strength of the relationship between the items was investigated with Spearman's correlation. Predictive accuracy of the clusters was compared to the scales by receiver operating characteristic (ROC) analysis. Presence of urinary symptoms at 3 years measured with the Late Effects on Normal Tissue: Subjective, Objective, Management tool (LENT/SOM) was an endpoint. Results: Two symptom clusters were identified (Urinary Cluster and Sexual Cluster). The grouping of symptom clusters was different than UCLA-PCI Scales. Two items of the Urinary Function Scales (“Number of pads” and “Urinary leak interfering with sex”) were excluded from the Urinary Cluster. The correlation with the other items in the scale ranged from 0.20-0.21 and 0.31-0.39 respectively. Cronbach's Alpha showed low correlation of those items with the Urinary Function Scale (0.14-0.36 and 0.33-0.44 respectively). All Urinary Function Scale items were subject to a ceiling effect. Clusters had better predictive accuracy, AUC = 0.70-0.65, while scales AUC = 0.67-0.61. Conclusion: This study adds to the knowledge on how cluster analysis can be applied for the interpretation and utilisation of PROMs. We conclude that multiple-item scales should be evaluated and that symptom clusters provide an adaptive and study specific approach for modelling and interpretation of PROMs.
The purpose of this study was to assess the incidence, pattern and severity of somnolence and fatigue in patients treated with cranial irradiation for primary brain tumours and to identify factors that may influence or mediate symptoms. A detailed prospective study was carried out of 19 patients who received high-dose (45-55 Gy) cranial irradiation as treatment for primary brain tumours. Data were collected for each patient over a 3 month period using a prospective diary utilizing visual analogue scales of common somnolence symptoms and fatigue, and detailed interviews at 2, 6 and 12 weeks following the completion of treatment. Sixteen patients developed somnolence syndrome following treatment. Time series analysis identified a cyclical pattern to the symptoms, with a period of drowsiness and fatigue occurring from day 11 to day 21 and from day 31 to day 35 after radiotherapy. The principal symptoms were those of excessive drowsiness, feeling clumsy, an inability to concentrate, lethargy, being mentally slow and fatigue. Patients treated with accelerated (n = 11) compared with more conventional (n = 8) fractionation experienced more severe drowsiness and fatigue (P < 0.01), although there was no difference in the pattern or the incidence of symptoms. Interview data suggested that patients frequently attributed their symptoms of somnolence to 'flu or other ailments. The unexplained and overwhelming nature of the symptoms was a cause of anxiety. The prospective assessment of symptoms following radiotherapy highlighted a more detailed definition of the symptom complex and pattern of occurrence. Somnolence syndrome is a collection of symptoms consisting of drowsiness, lethargy and fatigue. Forewarning patients and planning supportive management around times of drowsiness and fatigue can help to reduce the anxiety that these symptoms cause.
Manfred Wirth, Nicola Fossati, Peter Albers, Chris Bangma, Maurizio Brausi, Eva Comperat, Sara Faithfull, Silke Gillessen, Barbara Alicja Jereczek-Fossa, Ken Mastris, Nicolas Mottet, Stefan C Müller, Bradley Pieters, Maria J Ribal, Vijay Sangar, Ivo G Schoots, Vitaly Smelov, Luzia Travado, Riccardo Valdagni, Simone Wesselmann, Thomas Wiegel, Hendrik van Poppel (2019)The European Prostate Cancer Centres of Excellence: A Novel Proposal from the European Association of Urology Prostate Cancer Centre Consensus Meeting, In: European Urology76(2)pp. 179-186
High-quality management of prostate cancer is needed in the fields of clinics, research, and education.
The objective of this project was to develop the concept of “European Prostate Cancer Centres of Excellence” (EPCCE), with the specific aim of identifying European centres characterised by high-quality cancer care, research, and education.
Design, setting, and participants
A task force of experts aimed at identifying the general criteria to define the EPCCE. Discussion took place in conference calls and by e-mail from March 2017 to November 2017, and the final consensus meeting named “European Association of Urology (EAU) Prostate Cancer Centre Consensus Meeting” was held in Barcelona on November 16, 2017.
Outcome measurements and statistical analysis
The required criteria were grouped into three main steps: (1) clinics, (2) research, and (3) education. A quality control approach for the three steps was defined.
Results and limitations
The definition of EPCCE consisted of the following steps: (1) clinical step—five items were identified and classified as core team, associated services, multidisciplinary approach, diagnostic pathway, and therapeutic pathway; (2) research step—internal monitoring of outcomes was required; clinical data had to be collected through a prespecified database, clinical outcomes had to be periodically assessed, and prospective trials had to be conducted; (3) educational step—it consists of structured fellowship programmes of 1 yr, including 6 mo of research and 6 mo of clinics; and (4) quality assurance and quality control procedures, related to the quality assessment of the previous three steps. A limitation of this project was that the definition of standards and items was mainly based on a consensus among experts rather than being an evidence-based process.
The EAU Prostate Cancer Centre Consensus Meeting defined the criteria for the identification of the EPCCE in the fields of clinics, research, and education. The inclusion of a quality control approach represents the novelty that supports the excellence of these centres.
A task force of experts defined the criteria for the identification of European Prostate Cancer Centres of Excellence, in order to certify the high-quality centres for prostate cancer management.
Fifty per cent of patients with cancer are treated with radiotherapy during the course of their disease. Although side-effects have been described in studies, these are often not representative of the impact that these symptoms have on the individual. This article explores one area of radiotherapy management, that of pelvic radiotherapy in men, and describes how symptoms that patients experience during and following treatment can be a debilitating outcome of cancer therapy. At present, there is limited knowledge on how best to prevent symptoms from occurring, who is most at risk and how to manage these symptoms. Technology has advanced with accelerated regimes, conformal planning and new radiotherapy treatments. Yet still we are no further forward in dealing with toxicity from treatment. The focus of research has been on developing new cures and only now are questions being raised about the quality of life of patients having radiotherapy treatment.
Background Older adults live with multimorbidity including frailty and cognitive impairment often requiring hospitalization. While physical activity interventions (PAIs) are a normal rehabilitative treatment, their clinical effect in hospitalized older adults is uncertain. Objective To observe PAI dosing characteristics and determine their impact on clinical performance parameters. Design A single-site prospective observational cohort study in an older persons' unit. Subjects Seventy-five older persons' unit patients ≥65 years. Intervention PAI; therapeutic contact between physiotherapy clinician and patient. Measurements Parameters included changes in activities-of-daily-living (Barthel Index), handgrip strength, balance confidence, and gait velocity, measured between admission and discharge (episode). Dosing characteristics were PAI temporal initiation, frequency, and duration. Frailty/cognition status was dichotomized independently per participant yielding 4 subgroups: frail/nonfrail and cognitively-impaired/cognitively-unimpaired. Results Median (interquartile range) PAI initiation occurred after 2 days (1-4), frequency was 0.4 PAIs per day (0.3-0.5), and PAI duration per episode was 3.75 hours (1.8-7.2). All clinical parameters improved significantly across episodes: grip strength median (interquartile range) change, 2.0 kg (0.0-2.3) (P < .01); Barthel Index, 5 (3-8) (P < .01); gait velocity, 0.06 m.∙s−1 (0.06-0.16) (P < .01); and balance confidence, −3 (−6 to −1) (P < .01). Physical activity intervention dosing remained consistent within subgroups. While several moderate to large associations between amount of PAIs and change in clinical parameters were observed, most were within unimpaired subgroups. Conclusions PAI dosing is consistent. However, while clinical changes during hospital episodes are positive, more favourable responses to PAIs occur if patients are nonfrail/cognitively-unimpaired. Therefore, to deliver a personalized rehabilitation approach, adaptation of PAI dose based on patient presentation is desirable.
Background: Prostate cancer treatment-related distress is a substantial burden for up to a third of men diagnosed. Without support, physical and emotional symptoms, and health service use can increase; yet men are reticent to accept support. To provide easily accessible and acceptable support that can be cost effectively integrated into care pathways, we developed a unique, web-based, self-guided, cognitive-behavioural programme incorporating filmed and interactive peer support. We assessed feasibility among men with prostate cancer identified with distress and examined implementation in two settings: Phase I, a primary care psychological service; Phase II, a secondary care cancer service. Chat room facilitation was delivered by clinicians in the respective services. Objective We assessed: demand (engagement); acceptability (adherence, satisfaction, experience); potential for change in distress and self-efficacy; and challenges for implementation in clinical practice. Methods A pre-post, within-participant comparison, mixed-methods design. Men received clinician-generated postal invitations: n=432, diagnosed <5 years Phase I; n=606, diagnosed <3½ years Phase II. Consent was online; men with mild-moderate distress were enrolled. Web-based self-assessment included: demographic, disease, treatment characteristics; distress (General Health Questionnaire: GHQ-28); depression (Patient Health Questionnaire: PHQ-9); anxiety (General Anxiety Disorder Scale:GAD-7); self-efficacy (assessed only Phase II) (Self-Efficacy for Symptom Control Inventory: SESCI); satisfaction (author-generated, Likert-type questionnaire). Engagement assessment examined uptake and usage; adherence assessment reflected the Persuasive Systems Design Model. Telephone interviews explored participant experience (Phase II, n=10); facilitator/supervisor face-to-face interviews (n=4) explored implementation issues. Results 135 men consented (61/432, 14% Phase I: 74/606, 12% Phase II). 96 eligible men were screened for distress. 30 (30/96, 32%) with mild-moderate distress entered the intervention (n=10 Phase I; n=20 Phase II). 24 men completed the web-based programme and assessments (n=8 Phase I; n=16 Phase II). Adherence rates Phase I and II respectively were: module completion 63%/92%; CBT exercises 72%/88%; mood diary completion 100% both phases; films 75%/63%. 5/8 (63%) and 12/16 (75%) men posted in the chat room. Satisfaction was high for the programme and films; less so in Phase I for the chat room. Areas for programme enhancement were identified. Limited efficacy testing indicated potential for improvement in distress baseline to post-intervention: Phase I p=.027 r = -0.55; Phase II p=.001, r = -0.59. Self-efficacy improved for coping p=.02, r = -0.41, not performing daily activities (p=.078) or managing symptoms (p=.105). Service assessment confirmed ease of assimilation into clinical practice and clarified appropriate health care practitioner roles for facilitation. Conclusions The web-based programme is viable, practicable and innovative in clinical practice. It was endorsed by patients and has potential to positively impact the experience of men with distress as a result of prostate cancer. It can also potentially be delivered in primary or secondary care. Feasibility evidence is compelling and supports testing efficacy and cost-effectiveness in a multi-centre, randomised trial.
Taking their lead from patients' needs, innovative practitioners are coming to new prescribing arrangements that are free from past constraints. One such innovation involves nurses making decisions to give a drug according to a predetermined criteria with the support of a medical practitioner. This paper shows how a carefully organised system of administering drugs against protocol can work and how it is proving beneficial to patients.
Patients receiving cancer treatment often have one or more co-morbid conditions that are treated pharmacologically. Co-morbidities are recorded in clinical trials usually only at baseline. However, co-morbidities evolve and new ones emerge during cancer treatment. The interaction between multi-morbidity and cancer recovery is significant but poorly understood. Purpose:
To investigate the effect of co-morbidities (e.g. cardiovascular and diabetes) and medications (e.g. statins, antihypertensives, metformin) on radiotherapy-related toxicity and long-term symptoms in order to identify potential risk factors. The possible protective effect of medications such as statins or antihypertensives in reducing radiotherapy-related toxicity will also be explored. Methods:
Two datasets will be linked. 1) CHHiP (Conventional or Hypofractionated High Dose Intensity Modulated Radiotherapy for Prostate Cancer) randomised control trial. CHHiP contains pelvic symptoms and radiation-related toxicity reported by patients and clinicians. 2) GP (General Practice) data from RCGP RSC (Royal College of General Practitioners Research and Surveillance Centre). The GP records of CHHiP patients will be extracted, including cardiovascular co-morbidities, diabetes and prescription medications. Statistical analysis of the combined dataset will be performed in order to investigate the effect. Conclusions:
Linking two sources of healthcare data is an exciting area of big healthcare data research. With limited data in clinical trials (not all clinical trials collect information on co-morbidities or medications) and limited lengths of follow-up, linking different sources of information is increasingly needed to investigate long-term outcomes. With increasing pressures to collect detailed information in clinical trials (e.g. co-morbidities, medications), linkage to routinely collected data offers the potential to support efficient conduct of clinical trials.
In the UK, palliative care plays an important role in supporting patients and their carers during the course of a progressive and life-threatening illness. There has been much research into people’s preferred place of care and death, the future care needs of an aging society and the lack of resources and services in the community to support people’s wishes.1,2 There have also been numerous national drivers to emphasise and promote community-based care...
The concept of cure is often used in health care practices without thought to the social, cultural and psychological implications of its meaning. Frequently measured in terms of years of disease-free survival, this measure is inadequate in evaluating treatment. Iatrogenic toxicities and illness implications may linger for many months or years after a person experiences cancer. The subcultural perspectives of cure for clinicians may be very different. Historically, the clinician's concept of cure has been the focus and reported outcome of cancer treatment and research. A more dynamic view is encouraged in exploring this concept in relation to the outcomes of nursing practice.
Abstract Background: Cystic Fibrosis (CF) is one of the United Kingdom’s most common life limiting genetic disorders. Improvement in treatment modalities over the last 20 years has resulted in this group of patients living longer. The acceptability of accessing early palliative care for patients with CF and staff perceptions of a palliative care referral for this group is relatively unexplored. Integrated care has been used as a theoretical model to underpin this study. Aim: To explore the experience and perceptions of patients with CF and staff regarding palliative care and the acceptability of this as a service early in the patient’s disease trajectory. Method: A Mixed Methods Study informed this research. This three phase study included a Focus Group (phase 1) with 8 experts from both CF and palliative care, a national survey (phase 2) with 46 experts from CF and palliative care teams, and 17 interviews (phase 3) with patients with CF and health care professionals who care for patients with CF. Results: The term “palliative care” remains a barrier for some professionals in considering a referral to palliative care. Patients interviewed did not have such a problem with the term. Patients are supportive of palliative care being introduced earlier in the disease trajectory. Currently there is evidence to suggest that over 50% of teams do not have an integrated service between CF and palliative care. Discussion: This innovative study has identified a lack of clarity relating to when a patient with CF should be referred to palliative care services. Uncontrolled symptoms and transplant have been highlighted as potential triggers for referral to palliative care services. Patients have recognised that transplant may be too late for a referral and would like to be made aware of palliative care services earlier in the disease pathway. A model of integrated care has been generated from the findings of the study. Conclusion This study has explored early palliative care in adults with CF and considered the perceptions and experiences of patients and health care professionals. This three phase study has determined the views of patients for the first time regarding early palliative care. Together with national data in phase two and in depth interviews in phase three, an integrated model between CF and palliative care is proposed that illustrates the views of the patients and health care professionals, offering considerations for organisations in the development of integrated services. Key words: Cystic Fibrosis, Palliative Care, Integrated Care, patient and health care professional perceptions and experiences.
Background: Symptoms of Obsessive–Compulsive Disorder (OCD) sometimes do not improve despite being competently treated with known effective pharmacological and/or cognitive behavioural therapy with exposure and response prevention interventions. OCD symptoms that are particularly difficult to treat are related to harm /aggressive, sexually taboo and religious/blasphemous intrusive obsessional thoughts/images. Factors such as the vividness of the intrusive imagery, guilt, shame, cognitive inflexibility and inhibitory control deficits, are known to impact on OCD. Therefore it is important to further improve treatment given that the quality of life of patients with untreated OCD symptoms can be as equally poor as that of patients diagnosed with schizophrenia and in some cases worse. Imagery rescripting therapy is effective in reducing shame, guilt and the intensity of imagery vividness in trauma-based disorders such as Post-Traumatic Stress Disorder (PTSD). The ameliorative qualities of imagery rescripting may be of therapeutic benefit in OCD. Aim: This study explored the therapeutic utility of one-session imagery rescripting with homework practice in reducing image vividness, guilt, shame, cognitive inflexibility and impairment in motor inhibitory control linked to OCD related to harm/aggressive, sexually taboo and religious/blasphemous intrusive images. Methodology: A multiple baseline single-case experimental design was utilised with 6 adult participants recruited. One participant withdrew after the initial baseline phase and the visual graphed data analysis for 5 participants was conducted on scores on measures of vividness, shame, guilt and anxiety, with the Tau-U test utilised to assess trends between baseline and intervention phases. Clinical significance (CS) and reliable change index (RCI) calculations were used to assess changes in scores on global measures of OCD, depression and cognitive flexibilities before and after the intervention and at follow-up. A favourable ethical opinion was obtained from appropriate research ethics committees before data collection commenced. The study was conducted in accord with research ethics and governance requirements. Results: This study found that changes in intrusive imagery vividness, was only reported in one of the two patients whose intrusive imageries were associated with memories of past adverse experiences. It was also found that patients with intrusive imageries that did not have an association with an adverse memory also reported improvement in shame, guilt and OCD following imagery rescripting. The study also found that the OCD patients performed worse on the CANTAB – SSRT and ED tasks compared to the healthy normal group but similar to the OCD clinical controls, however, the improvements in set-shifting deficits and or in motor inhibitory impairment following imagery rescripting could not be established. Instead it was found that the impairments improved following repeated measurements at the baseline phase in the absence of treatment. Conclusion and Implications: Although only one patient supplied evidence consistent with imagery rescripting having therapeutic potential for OCD images, however from a broader view point the study demonstrated replication failure of this result across the participants. Furthermore, there was also no conclusive evidence to suggest imagery rescripting had significantly changed set-shifting and motor inhibitory impairments. Further investigation is required, taking into account of the study limitations and implications before one could comment for definite how the findings contribute to the current knowledge. Single case experimental design might not be particularly suitable for investigating neurocognitive improvement in treatment trials due to the nature of repeated measurements.
Aim: To evaluate the reliability and reproducibility of the Spectromatch-Pro digital colour system (Spectromatch Ltd. UK) in the reproduction of simulated skin-silicone colour samples; and to determine threshold Delta E (∆E) (CIE L*a*b*) of perceptible and acceptable colour differences for maxillofacial prosthetics. Method: A two phase quantitative research design. Phase 1: tested; (i) the reproducibility of the spectrophotometer for eight subjects (n=48) scans; from four ethnic groups White, Chinese, Asian and Black. (ii) minimum silicone-skin sample thickness for colour scanning; and (iii) reproducibility of simulated silicone-skin samples formulae recipe. Phase 2: Determine the perceptible and acceptable colour match difference between colour silicone-skin samples and human skin for 8 subjects'; from baseline colour scan, an in-built colour L*a*b* gradient scales 0-8 at 0.5 ∆E increments were formulated. Silicones samples (n=776) were processed; perceptible and acceptable colour difference (∆E) assessed by (n=12) colour assessors. Results: The spectrophotometer skin colour scans for White, Chinese Indian and Black ethnic groups demonstrated positive correlation (r=0.99). Scanner reproducibility for the eight subjects, Mean ± SD, ∆E maximum (1.43 ± 0.63), to minimum (0.47 ± 0.21); colour formulae silicone sample achieved an acceptable colour match of 0.43 ∆E to 1.36 ∆E. The minimum silicone sample thickness (mm); for light to dark skin tones was 8 mm (White 6 mm; Black 8 mm). Pigment formula-sample reproducibility (Mean ∆E and SD) maximum (1.36 ± 0.29), minimum (0.43 ± 0.16). The acceptable colour difference threshold for skin simulated medical elastomers for four ethnic groups 1.54 ∆E, White 1.61 ∆E; Chinese 1.87 ∆E; Indian was not detectable; and Black 2.33 ∆E. Perceptible and acceptable colour difference (L*a*b*) CIE for L* (Light/dark) for all subjects 1.68 to 3.18 ∆E; for a* (red/green), the scores were below 2 cut off point (not acceptable); and for b* (blue/yellow) 1.58 to 0.51 ∆E. Conclusion: This study has established the reproducibility of the Spectromatch digital colour system; and objectively defined the perceptible and acceptable (∆E) thresholds (1) for facial prosthetics (Mean ∆E 1.54), (2) the relationship to human eye sensitivity and the perceptibility / acceptability for silicone-skin colour match for maxillofacial prosthetics.
There has been an increasing recognition over the last ten years of the importance of integrating palliative care alongside other aspects of care for people with life-limiting illness including kidney disease. Over the same time period, policy initiatives have aimed to address and improve the end of life care for all adults with kidney disease. However, little is known about the transitions experienced by people with end-stage kidney disease (ESKD) as they approach the end of life. This qualitative study explored the transitions experienced by people with ESKD as they approached the end of their lives. A constructivist grounded theory methodology was used, and unstructured interviews were conducted with twelve people living with ESKD who were deemed to be approaching the end of their lives. The interview data were analysed and interpreted using the constant comparative method. The core category of ‘restructuring reality’ emerged from the data analysis alongside three dynamic, interrelated conceptual categories and the subcategories within these. These conceptual categories were: ‘striving to maintain autonomy and control in decision making’, ‘managing uncertainty: knowing without clarity or confirmation’, and ‘the importance of personal virtues in transitioning through the illness’. The substantive theory which emerged from the data analysis and which conceptualised the process and experience of transition for people with ESKD in this study was defined as 'the restructuring of reality during transition for people with ESKD approaching the end of life’. The study findings provided valuable insight into the experience of people with ESKD as they approach the end of their lives. The tentative theory presented in this study added to the knowledge of the transitions experienced by people with ESKD as they approached the end of their life. The theory captured how participants made sense of and adjusted to the changes they experienced as their health deteriorated; it emphasised that being able to continue to contribute and be involved in decision-making about care was an important aspect of the transition process as people approached the end of their lives. The study findings also highlighted the importance of healthcare professionals undertaking end of life discussions with patients throughout their illness trajectory to ensure people with ESKD are afforded the opportunity to be involved in timely decision making and provided with good quality end of life care.
Background: A rise in life expectancy has increased the likelihood of complex co-morbidities and disability resulting in a change in the make-up of hospitalised older adults and their rehabilitative requirements, including physiotherapy. Studies to date of the impact of physiotherapy on older adults admitted to hospital have investigated the intervention in isolation from context and have resulted in inconsistent outcomes. There remains a lack of evidence and theory regarding why physiotherapy is effective in some instances and not in others. Purpose: The thesis aims to examine the mechanisms might or might not work for patients, the influence of context on the actions of stakeholders to impact on outcomes and finally the appropriate methodology with which to investigate physiotherapy intervention. Method: Realistic evaluation (RE) was used as a framework for the study. Initial theories about the impact of physiotherapy on medically unwell older adults were expressed terms of context-mechanism-outcomes configurations and developed into hypotheses with stakeholders. Testing of hypotheses utilised a sequential mixed methods design including quantitative and qualitative measures, obtained from a convenience sample of older medically unwell patients (n=75) and a purposive sample of physiotherapists (n=6), patients and carers (n=8) respectively. Outcomes included measures of physiotherapy intervention, patient health status and hospital performance. Descriptive data analysis with subgroup comparison (frail/non-frail or cognitive impairment/cognitive impairment) was undertaken for outcome measures using Mann-Whitney U and Spearman’s correlation co-efficient. Qualitative data were analysed using framework analysis. Quantitative and qualitative study findings were reviewed, integrated and context-mechanism-outcome threads identified. Initial theories were refined in light of study outcomes. Findings: The sample mean age was 84.8 years (SD±7.1), 73% of individuals were identified as frail and 52% had cognitive impairment. Median hospital length of stay was 14 days (9-26). Median (IQR) physiotherapy interventions were 5 (3-10), total amount of physiotherapy 3.5 hours (1.8-7.21 hours) and frequency of physiotherapy intervention was 0.4 interventions/day (0.3-0.5). Subgroup analysis revealed patients had no between group differences in physiotherapy interventions. Moderate to large associations relating to a positive effect of physiotherapy on change in health status outcomes were present in unimpaired subgroups only. Physiotherapist and patient accounts indicated that organisational commitment to physiotherapy service provision, patient presentations of frailty and cognitive impairment and the priority of rehabilitation activities in the clinical ward setting triggered specific actions in frontline staff and patients. Patient and staff actions influenced by contextual factors affected the dose of physiotherapy and independent patient activity on the ward and contributed to explanation of patient health status outcomes in this study. Conclusion: The use of RE has resulted in the emergence of important elements related to context and stakeholder actions, which act as barriers or facilitators to physiotherapy implementation and effects of physiotherapy on medically unwell older adults admitted to hospital. Further testing of revised theories is required to enhance understanding of the impact of physiotherapy in terms of what works or doesn’t work for older adults. However, the in-depth knowledge revealed in this study has utility for informing models of physiotherapy and rehabilitation provision in the acute setting to best meet the needs of patients.
Aim: This study aimed to develop a grounded theory to explain the experience of patients with neurodegenerative diseases and their carers, following an episode of residential respite care. Background: Neurodegenerative diseases are incurable, debilitating and result in progressive deterioration of the patient which present as problems with cognitive functioning (dementias) and/or physical functioning (ataxias). To allow quality of life and purpose for the patient and caregiver, as well as providing value for money, respite is an area of care which could offer the patient rehabilitation, maximisation of functionality and quality of life; relief from caregiving duties for the carer and signposting for additional assistance and support. Methods: This was a qualitative, grounded theory study conducted across south east England. An initial audit, attendance at support groups and specialist clinics provided scoping of the scale of the problems encountered by this patient population. Data collection included 17 semi structured interviews conducted with patients and carers who had recently received residential respite, non-participant observation at a hospice offering dedicated respite care and 4 hospice staff interviews. Findings: A successful respite depended on the patient and carer identifying the need for respite and the information required to determine where, what, when and how respite could be accessed. The logistics of the referral process, preparation for respite and the handover of care needs to professionals were key factors for a therapeutic admission. Conclusion: The outcomes from the respite admission should be mutually acceptable to both the patient and carer and be able to demonstrate acceptance and adaptation to a new normalcy, influenced by disease progression and reflecting on time present and time past. The onward journey sees a transitioning which involves restoration and building up a level of resilience for the carer, which all contribute to sustainability and being able to continue in the caring role.