Emma is a Registered Nurse; she qualified in 1990 having undertaken a BSc in Nursing with Economics at St Bartholomew's Hospital in conjunction with City University. She worked in general and oncology nursing before moving into academia at King's College London. She was awarded her MSc in Nursing from King's College London (1995) and later her doctorate (2002) for her work developing and evaluating an intervention for cancer-related fatigue.
Emma held various research and teaching posts at King's College London before being conferred the title Professor of Supportive Cancer Care in 2009 in recognition of her contribution to cancer and palliative care nursing and her outstanding research profile and academic leadership. In 2011 she was awarded a King's College London Supervisory Excellence Award for excellence in postgraduate research supervision.
At King's College London she led the Supportive Cancer Care Research Group and provided strategic leadership in the Florence Nightingale Faculty of Nursing and Midwifery for cancer and palliative nursing education and research. She has a research career spanning 25 years and is internationally recognised for her research in cancer care.
Hospices struggle to deliver specialised support to children when a parent is dying
Emma's research programme aims to enhance supportive care provided to patients and their carers (family members/friends who share the experience of cancer with patients). It aims to help patients maximise the benefits of treatment whilst enabling patients and their carers to live as well as possible with the effects of the disease and consequences of its treatment. Key themes within her research programme include: determining unmet supportive care needs in people living with and beyond cancer; understanding impact of inequalities on experience and outcomes of cancer care; developing and evaluating complex interventions to facilitate supported self-management of symptoms (in particular fatigue) and enhance people's lives following treatment for cancer; and developing and evaluating interventions to enhance the role and wellbeing of carers. She has considerable experience of developing complex interventions and evaluating their outcomes through mixed method research designs.
1. EU 7th Framework Programme (2013; 60 months) Randomised controlled trial to evaluate electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology for patients with cancers (Kearney, Maguire, Ream et al) €5,999,991
2. National Institute of Health Research (2014; 36 months) Evaluating the feasibility and acceptability of early decongestive treatment for newly presenting breast cancer-related lymphedema (BCRL) of the upper limnb. Clinical doctoral research fellowship (Jeffs & Ream) £325, 969
3. Dimbleby Cancer Care (2014; 15 months) Walking for health in people with advanced cancer: a study to assess acceptability and feasibility (Armes, Purushotham, Ream, Van Helmrick) £74, 946
4. Big Lottery Fund (2010; 60 months) Improving breast cancer patients' wellbeing during transition to survivorship (Scanlon, Harding, Ream) £395,974
Emma provides strategic leadership for education in research across modules and programmes within the School.
People with cancer experience a variety of symptoms as a result of their disease and the therapies involved in its management. Inadequate symptom management has implications for patient outcomes including functioning, psychological well-being and quality of life (QoL). Attempts to reduce the incidence and severity of cancer symptoms have involved the development and testing of psycho-educational interventions to enhance patients' symptom self-management. With the trend for care to be provided nearer patients' homes, telephone-delivered psycho-educational interventions have evolved to provide support for the management of a range of cancer symptoms. Early indications suggest that these can reduce symptom severity and distress through enhanced symptom self-management.
To assess the effectiveness of telephone-delivered interventions for reducing symptoms associated with cancer and its treatment. To determine which symptoms are most responsive to telephone interventions. To determine whether certain configurations (active ingredients, dosage) of telephone interventions mediate observed cancer symptom outcome effects.
We searched the following databases: the Cochrane Central Register of Controlled Trials (CENTRAL; 2019, Issue 1) in the Cochrane Library; MEDLINE via OVID (1946 to January 2019); Embase via OVID (1980 to January 2019); CINAHL via Athens (1982 to January 2019); British Nursing Index (1984 to January 2019); and PsychINFO (1989 to January 2019). Additionally, we searched conference proceedings to identify published abstracts, and SIGLE and trial registers for unpublished studies. We also searched the reference lists of all included articles for additional relevant studies. Finally, we hand searched the following journals: Cancer, Journal of Clinical Oncology, Psycho-oncology, Cancer Practice, Cancer Nursing, Oncology Nursing Forum, Journal of Pain and Symptom Management, Palliative Medicine. Search was restricted to publications published in English.
We included randomised control trials (RCTs) and quasi-RCTs which compared one or more telephone interventions with each other, or with other types of interventions (e.g. a face-to-face intervention) and/or usual care, with the stated aim of addressing any physical or psychological symptoms of cancer and its treatment, which recruited adult (over 18 years) men and women with a clinical diagnosis of cancer, regardless of tumour type, stage of cancer, type of treatment and time of recruitment (e.g. pre, during or post treatment).
Data collection and analysis
Two review authors independently selected articles, extracted data, and appraised methodological quality and risk of bias. Disagreements were resolved through discussion, involving the entire review team where necessary. Risk of bias was assessed using the Cochrane's risk of bias tool. We had planned to conduct meta-analyses using random effects models for symptoms where there were sufficient data to enable this. Heterogeneity between study outcomes was planned to be determined through visual inspection of forest plots and calculation of the I2 statistic. Where possible, outcomes are reported as standardised mean differences (SMDs) with 95% confidence intervals (CIs) and a descriptive synthesis of study findings is presented. Findings are reported on according to symptom addressed and intervention type (e.g. telephone only or telephone combined with other elements). As many studies had small samples, and baseline scores for study outcomes often varied for intervention and control groups, change scores and associated standard deviations were used.
Thirty-two studies were eligible for the review; most had moderate risk of bias, mostly related to blinding. Collectively they recruited 6250 people. Interventions were studied in people with a variety of cancer types and across the disease trajectory although many participants had breast cancer, early stage cancers and/or were starting treatment. Symptoms measured were anxiety, depression, emotional distress, uncertainty, fatigue, pain, sexuality-related symptoms and general symptom intensity and/or distress.
Interventions were primarily (n = 24) delivered by nurses, most (n=16) had a background in oncology, research or psychiatry. Ten were delivered solely by telephone; the rest combined telephone with additional elements (face-to-face consultation, and digital/online/printed resources). Number of calls delivered ranged from 1 to 18; most provided 3 to 4 calls.
Twenty‐one studies provided evidence on effectiveness of telephone‐delivered interventions and the majority appeared to reduce symptoms of depression compared to control. Nine studies contributed quantitative change scores (CSs) and associated standard deviation results (or these could be calculated). Likewise, many telephone interventions appeared effective when compared to control in reducing anxiety (16 studies; 5 contributed quantitative CS results); fatigue (9 studies; 6 contributed to quantitative CS results); and emotional distress (7 studies; 5 contributed quantitative CS results). Due to significant clinical heterogeneity with regards to interventions introduced, study participants recruited, and outcomes measured, meta‐analysis was not conducted.
For other symptoms (uncertainty, pain, sexuality-related symptoms, dyspnoea and general symptom experience) there was limited evidence; meta-analysis was similarly not possible and the results from individual studies were largely conflicting making conclusions about their management through telephone-delivered intervention hard to draw. There was considerable heterogeneity across all trials for all outcomes.
Overall, the certainty of the evidence was low for all outcomes in the review due to uncertainty over estimates. Outcomes were all downgraded due to concerns about overall risk of bias profiles being frequently unclear and due to inconsistencies in results and general heterogeneity.
Unsubstantiated evidence suggests that telephone interventions in some capacity may have a place in symptom management for adults with cancer. However, in the absence of reliable and homogeneous evidence, caution is needed in interpreting the narrative synthesis. Further, there were no clear patterns across studies regarding which forms of interventions (telephone alone versus augmented with other elements) are most effective. It is impossible to conclude with any certainty which forms of telephone intervention are most effective in managing the range of cancer‐related symptoms that people with cancer experience.
Telephone interventions provide a convenient way of supporting self-management of cancer-related symptoms in adults with cancer. They are becoming more important with the shift of care closer to patients' homes, need for resource/cost containment and potential for voluntary-sector providers to deliver healthcare interventions. There is some evidence supporting use of telephone-delivered interventions for symptom management in adults with cancer; most evidence relates to four commonly experienced symptoms - depression, anxiety, emotional distress and fatigue. Some telephone-delivered interventions were augmented by combining them with face-to-face meetings and provision of printed or digital materials. The review was unable to determine whether telephone alone or in combination with other elements provides optimal reduction in symptoms; it appears most likely that this will vary by symptom. It is noteworthy that, despite the potential for telephone interventions to deliver cost savings, none of the studies reviewed included any form of health economic evaluation.
Further robust and adequately reported trials are needed across all cancer-related symptoms as the certainty of evidence generated in studies within this review was largely low to moderate, and reporting was of variable quality. Efforts are needed by researchers to reduce variability between studies in future. Studies in the review were characterised by both clinical and methodological diversity; the level of diversity hindered comparison across studies. At the very least, efforts should be made to standardise outcome measures. Finally, studies were compromised by having small samples, inadequate concealment of group allocation, lack of observer blinding and short length of follow up. Consequently, conclusions relating to symptoms most amenable to management by telephone-delivered intervention are tentative.
Understanding barriers to early diagnosis of symptomatic breast cancer among Black African, Black Caribbean and White British women in the UK.Design:
In-depth qualitative interviews using grounded theory methods to identify themes. Findings validated through focus groups.Participants:
94 women aged 33-91 years; 20 Black African, 20 Black Caribbean and 20 White British women diagnosed with symptomatic breast cancer were interviewed. Fourteen Black African and 20 Black Caribbean women with (n=19) and without (n=15) breast cancer participated in six focus groups.Setting:
Eight cancer centres/hospital trusts in London (n=5), Somerset (n=1), West Midlands (n=1) and Greater Manchester (n=1) during 2012-2013.Results:
There are important differences and similarities in barriers to early diagnosis of breast cancer between Black African, Black Caribbean and White British women in the UK. Differences were influenced by country of birth, time spent in UK and age. First generation Black African women experienced most barriers and longest delays. Second generation Black Caribbean and White British women were similar and experienced fewest barriers. Absence of pain was a barrier for Black African and Black Caribbean women. Older White British women (≥70 years) and first generation Black African and Black Caribbean women shared conservative attitudes and taboos about breast awareness. All women viewed themselves at low risk of the disease, and voiced uncertainty over breast awareness and appraising non-lump symptoms. Focus group findings validated and expanded themes identified in interviews.Conclusions:
Findings challenged reporting of Black women homogenously in breast cancer research. This can mask distinctions within and between ethnic groups. Current media and health promotion messages need reframing to promote early presentation with breast symptoms. Working with communities and developing culturally appropriate materials may lessen taboos and stigma, raise awareness, increase discussion of breast cancer and promote prompt help-seeking for breast symptoms among women with low cancer awareness.
Background: There has been an international shift in health care, which has seen an increasing focus and development of technological and personalized at-home interventions that aim to improve health outcomes and patient-clinician communication. However, there is a notable lack of empirical evidence describing the preparatory steps of adapting and implementing technology of this kind across multiple countries and clinical settings.
Objective: This study aimed to describe the steps undertaken in the preparation of a multinational, multicenter randomized controlled trial (RCT) to test a mobile phone–based remote symptom monitoring system, that is, Advanced Symptom Management System (ASyMS), designed to enhance management of chemotherapy toxicities among people with cancer receiving adjuvant chemotherapy versus standard cancer center care.
Methods: There were 13 cancer centers across 5 European countries (Austria, Greece, Ireland, Norway, and the United Kingdom). Multiple steps were undertaken, including a scoping review of empirical literature and clinical guidelines, translation and linguistic validation of study materials, development of standardized international care procedures, and the integration and evaluation of the technology within each cancer center.
Results: The ASyMS was successfully implemented and deployed in clinical practices across 5 European countries. The rigorous and simultaneous steps undertaken by the research team highlighted the strengths of the system in clinical practice, as well as the clinical and technical changes required to meet the diverse needs of its intended users within each country, before the commencement of the RCT.
Conclusions: Adapting and implementing this multinational, multicenter system required close attention to diverse considerations and unique challenges primarily related to communication and clinical and technical issues. Success was dependent on collaborative and transparent communication among academics, the technology industry, translation partners, patients, and clinicians as well as a simultaneous and rigorous methodological approach within the 5 relevant countries.
Objective The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment.
Methods A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention.
Results Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3–5 can be tailored to user preference and are designed to cover areas of life where CRF may have an impact: home and work life, personal relationships and emotional adjustment.
Conclusions It is feasible to systematically ‘co-create’ an evidence-based and theory-driven web-based self-management intervention to support cancer survivors living with the consequences of cancer and its treatment. This is the first account of the development of a web-based intervention to support self-efficacy to manage CRF. An exploratory trial to test the feasibility and acceptability of RESTORE is now warranted. Copyright © 2015 John Wiley & Sons, Ltd.
Lymphedema is a common consequence of breast cancer treatment requiring life-long treatment to reduce symptoms and prevent complications. Evidence to inform the optimal decongestive lymphedema treatment package is lacking.Objective
To identify the effect of decongestive lymphedema treatment on excess arm volume or patient-centered outcomes for women presenting within either 12 months or mean 9 months of developing arm lymphedema following breast cancer treatment.Inclusion criteria
Types of participants: women who received lymphedema treatment within either 12 months or mean 9 months of developing unilateral breast cancer-related arm lymphedema. Types of intervention: any decongestive lymphedema treatment delivered with the purpose of reducing arm lymphedema, compared to another form of lymphedema treatment (whether self or practitioner administered), placebo or no treatment. Types of outcomes: clinical outcome was excess arm volume; patient-centered outcomes were health related quality of life, arm heaviness, arm function, patient-perceived benefit and satisfaction with treatment. Types of studies: experimental study designs were eligible, including randomized and non-randomized controlled trials, quasi-experimental, prospective and retrospective before and after studies.Search strategy
A three-step search strategy was utilized to find published and unpublished studies. The search identified studies published from inception of each database to 6th July 2016. Reference lists were scanned to identify further eligible studies.Methodological quality
Studies were critically appraised using appropriate standardized critical appraisal instruments from The Joanna Briggs Institute.Data extraction
Details describing each study and treatment results regarding outcomes of interest were extracted from papers included in the review using appropriate standardized data extraction tools from The Joanna Briggs Institute.Data synthesis
Due to heterogeneity in included studies, results for similar outcome measures were not pooled in statistical meta-analysis. A narrative and tabular format was used to synthesize results from identified and included studies.Results
Seven studies reporting results for outcomes of interest were critically appraised and included in the review: five randomized controlled trials and two descriptive (uncontrolled) studies. Reported outcomes included excess arm volume (five studies), health-related quality of life (three studies), arm heaviness (one study), arm function (two studies) and patient-perceived benefit (two studies). There was some evidence that decongestive treatments were effective for women presenting within either 12 months or mean 9 months of developing breast cancer-related arm lymphedema, but the wide range of data prevented comparison of treatment findings which limited our ability to answer the review questions.Conclusions
Weak evidence (grade B) for the impact of decongestive lymphedema treatment on women with early lymphedema (i.e. less than 12 months duration of BCRL symptoms) did not allow any conclusions to be drawn about the most effective treatment to be offered when these women first present for treatment. Findings provided no justification to support change to current practice. Future primary research needs to focus on the most effective treatment for women when they first present with lymphedema symptoms, e.g. treatment provided within 12 months of developing symptoms. Studies should be adequately powered and recruit women exclusively with less than 12 months duration of BCRL symptoms, provide longer follow-up to monitor treatment effect over time, with comparable treatment protocols, outcome measures and reporting methods.
Purpose: Primary care nurses can contribute to cancer early diagnosis. The objective of this systematic review was to identify, appraise and synthesise evidence on primary care nurses’ contribution towards cancer early diagnosis in developed countries.
Method: The following databases were searched in September 2017: MEDLINE, PsychINFO, CINAHL, SCOPUS, and EMBASE. Data were extracted on nurses’: knowledge of cancer; frequency of 'cancer early diagnosis-related discussions' with patients; and perceived factors influencing these discussions. Studies were appraised using the Mixed Methods Appraisal Tool.
Results: Twenty-one studies were included from: United States, United Kingdom, Ireland, Spain, Turkey, Australia, Brazil and Middle East. Studies were mostly of low quality (one did not meet any appraisal criteria, 15 met one, four met two, and one met three). Nurses’ knowledge of cancer, and their frequency of ‘cancer early diagnosis-related discussions’, varied across countries. This may be due to measurement bias or nurses’ divergent roles across healthcare systems. Commonly perceived barriers to having screening discussions included: lack of time, insufficient knowledge and communication skills, and believing that patients react negatively to this topic being raised
Conclusions: Findings suggest a need for nurses to be adequately informed about, and have the confidence and skills to discuss, the topic of cancer early diagnosis. Further high-quality research is required to understand international variation in primary care nurses’ contribution to this field, and to develop and evaluate optimal methods for preparing them for, and supporting them in, this.
Net survival rates for cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer care of cancer survivors - individuals living with and beyond cancer - to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and healthcare professionals, is an important contributor to this evolving model of care and may offer additional benefits to cancer survivors. Telehealth is a complex intervention and understanding patient experiences of it is important in evaluating its impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth have yet to be synthesised.
Systematically identify, appraise and synthesise qualitative research evidence on the experiences of adult cancer survivors participating in telehealth intervention(s), to characterise the patient experience of telehealth interventions for this group.
Medline (PubMed), PsychINFO, CINAHL (Cumulative Index for Nursing and Allied Health Professionals), Embase and Cochrane Central Register of Controlled Trial were searched on 14th August 2015 and 8th March 2016 for English-language papers published between 2006 and 2016. Inclusion criteria were: adult cancer survivors aged 18 and over; cancer diagnosis; experience of participating in a telehealth intervention (defined as remote communication and/or remote monitoring with a healthcare professional(s) delivered by telephone, internet, or hand-held/mobile technology); reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) Checklist for Qualitative Research was used to assess paper quality. The results section of each included article was coded line by line and all papers underwent inductive analysis, involving comparison, re-examination and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies.
22 papers were included. Three analytical themes emerged, each with three descriptive subthemes: 1. Influence of telehealth on the disrupted lives of cancer survivors a. Convenience b. Independence c. Burden 2. Personalised care in a virtual world a. Time b. Space c. The human factor 3. Remote reassurance – a safety net of healthcare professional connection a. Active connection b. Passive connection c. Slipping through the net Telehealth interventions represent a convenient approach which can potentially minimise treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalised care and reassurance for those living with and beyond cancer, but it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden.
Telehealth interventions can provide cancer survivors with both independence and reassurance; both important for everyday life or wellbeing. Future telehealth interventions need to be developed iteratively and in collaboration with a broad range of cancer survivors to maximise engagement and benefit.
Prostate cancer (PC) is common and affects Black African and Caribbean men disproportionately more than White men. It is known that PC awareness is low in these groups, but knowledge is lacking about other factors that may deter Black men from seeking information about, or getting tested for, PC. The aim of this review was to appraise research on knowledge and perceptions of PC among Black men.Methods
Four medical and social science databases were systematically searched, and reference lists of relevant papers were hand searched. Non-English publications were excluded. Qualitative findings were synthesised using comparative thematic analysis to which quantitative findings were integrated.
Thirteen qualitative studies and 20 cross-sectional surveys were included. All except two were conducted in the USA. The analysis identified individual, cultural and social factors likely to impact on Black men's awareness of, and willingness to be tested for, PC. Black men's awareness of personal risk of PC varied greatly between studies. Misunderstandings regarding methods of diagnosis and treatment were widespread. PC testing and treatment were perceived as a threat to men's sense of masculinity. Mistrust of the health-care system, limited access to health care and lack of trusting relationships with health professionals were also prominent.
The factors impacting on Black men's awareness of PC may contribute to late PC diagnosis and should be taken into account when communicating with Black men seeking prostate care. Further, the review demonstrated a need for high-quality studies in countries other than the USA to determine the relevance of the review findings for Black men in other nations and continents.
Purpose: To identify potential candidate predictors of anxiety in women with early stage breast cancer (BC) after adjuvant treatments and evaluate methodological development of existing multivariable models to inform the future development of a predictive risk stratification model (PRSM).
Methods: Databases (MEDLINE, Web of Science, CINAHL, CENTRAL and PsycINFO) were searched from inception to November 2015. Eligible studies were prospective, recruited women with stage 0-3 BC, used a validated anxiety outcome ≥ 3 months' post-treatment completion and used multivariable prediction models. Internationally accepted quality standards were used to assess predictive risk of bias and strength of evidence.
Results: Seven studies were identified, five were observational cohorts and two secondary analyses of RCTs. Variability of measurement and selective reporting precluded meta-analysis. Twenty-one candidate predictors were identified in total. Younger age and previous mental health problems were identified as risk factors in ≥ 3 studies. Clinical variables (e.g. treatment, tumour grade) were not identified as predictors in any studies. No studies adhered to all quality standards.
Conclusions: Pre-existing vulnerability to mental health problems and younger age increased the risk of anxiety after completion of treatment for BC survivors, but there was no evidence that chemotherapy was a predictor. Multiple predictors were identified but many lacked reproducibility or were not measured across studies, and inadequate reporting did not allow full evaluation of the multivariable models. The use of quality standards in the development of PRSM within supportive cancer care would improve model quality and performance thereby allowing professionals to better target support for patients.
Purpose Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treatment. RESTORE is the first web-based resource designed to enhance self-efficacy to manage CRF following curative-intent treatment. The aim of this study is to test the proof of concept and inform the design of an effectiveness trial.
Methods A multi-centre parallel-group two-armed (1:1) exploratory randomised controlled trial (RCT) with qualitative process evaluation was employed in the study. Participants (≥18 years; ≤5 years post treatment with moderate to severe fatigue) were recruited and randomly assigned to RESTORE or a leaflet. Feasibility and acceptability were measured by recruitment, attrition, intervention adherence, completion of outcome measures and process evaluation. Change in self-efficacy to manage CRF was also explored. Outcome measures were completed at baseline (T0), 6 weeks (T1) and 12 weeks (T2). Data were analysed using mixed-effects linear regression and directed content analysis.
Results One hundred and sixty-three people participated in the trial and 19 in the process evaluation. The intervention was feasible (39 % of eligible patients consented) and acceptable (attrition rate 36 %). There was evidence of higher fatigue self-efficacy at T1 in the intervention group vs comparator (mean difference 0.51 [−0.08 to 1.11]), though the difference in groups decreased by 12 weeks. Time since diagnosis influenced perceived usefulness of the intervention. Modifications were suggested.
Conclusion Proof of concept was achieved. The RESTORE intervention should be subject to a definitive trial with some adjustments. Provision of an effective supportive resource would empower cancer survivors to manage CRF after treatment completion.
Background Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children’s emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying.
Aim To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent’s death.
Design A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data.
Results 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z = -5.767, p ˂0001). 22% of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an under-used resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers.
Conclusions Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents, and children are needed.
Risk profiling of oncology patients based on their symptom experience assists clinicians to provide more personalized symptom management interventions. Recent findings suggest that oncology patients with distinct symptom profiles can be identified using a variety of analytic methods.Objectives:
To evaluate the concordance between the number and types of subgroups of patients with distinct symptom profiles using latent class analysis (LCA) and K-modes analysis.Methods:
Using data on the occurrence of 25 symptoms from the Memorial Symptom Assessment Scale (MSAS), that 1329 patients completed prior to their next dose of chemotherapy (CTX), Cohen’s kappa coefficient was used to evaluate for concordance between the two analytic methods. For both LCA and K-modes, differences among the subgroups in demographic, clinical, and symptom characteristics, as well as quality of life outcomes were determined using parametric and nonparametric statistics.Results:
Using both analytic methods, four subgroups of patients with distinct symptom profiles were identified (i.e., All Low, Moderate Physical and Lower Psychological, Moderate Physical and Higher Psychological, All High). The percent agreement between the two methods was 75.32% which suggests a moderate level of agreement. In both analyses, patients in the All High group were significantly younger and had a higher comorbidity profile, worse MSAS subscale scores, and poorer QOL outcomes.Conclusion:
Both analytic methods can be used to identify subgroups of oncology patients with distinct symptom profiles. Additional research is needed to determine which analytic methods and which dimension of the symptom experience provides the most sensitive and specific risk profiles.
Risk profiling of oncology patients based on their symptom experience assists clinicians to provide more personalized symptom management interventions. Recent findings suggest that oncology patients with distinct symptom profiles can be identified using a variety of analytic methods.Objectives
To evaluate the concordance between the number and types of subgroups of patients with distinct symptom profiles using latent class analysis (LCA) and K-modes analysis.Methods
Using data on the occurrence of 25 symptoms from the Memorial Symptom Assessment Scale (MSAS), that 1329 patients completed prior to their next dose of chemotherapy (CTX), Cohen’s kappa coefficient was used to evaluate for concordance between the two analytic methods. For both LCA and K-modes, differences among the subgroups in demographic, clinical, and symptom characteristics, as well as quality of life outcomes were determined using parametric and nonparametric statistics.Results
Using both analytic methods, four subgroups of patients with distinct symptom profiles were identified (i.e., All Low, Moderate Physical and Lower Psychological, Moderate Physical and Higher Psychological, All High). The percent agreement between the two methods was 75.32% which suggests a moderate level of agreement. In both analyses, patients in the All High group were significantly younger and had a higher comorbidity profile, worse MSAS subscale scores, and poorer QOL outcomes.Conclusion
Both analytic methods can be used to identify subgroups of oncology patients with distinct symptom profiles. Additional research is needed to determine which analytic methods and which dimension of the symptom experience provides the most sensitive and specific risk profiles.
With life expectancy continuing to rise in the United Kingdom there is an increasing public health focus on the maintenance of physical independence among all older adults. Identifying interventions that improve physical outcomes in pre-frail and frail older adults is imperative.
A systematic review of the literature 2000 to 2017 following PRISMA guidelines and registered with PROSPERO (no. CRD42016045325).
Ten RCT trials fulfilled selection criteria and quality appraisal. The study quality was moderate to good. Interventions included physical activity; nutrition, physical activity combined with nutrition. Interventions that incorporated one or more physical activity components significantly improved physical outcomes in pre-frail and/or frail older adults.
Physical activity interventions are key to maintaining independence in pre-frail and frail older adults. A lack of consensus regarding the definition of frailty, and an absence of core measures to assess this means any attempt to create an optimal intervention will be impeded. This absence may ultimately impact on the ability of older and frail adults to live well and for longer in the community.
Background: Children need to be prepared for the death of a parent and supported afterwards. Parents seek support from health and social care professionals to prepare their children. Support is not always forthcoming.
Aim: To systematically identify, analyse and synthesise literature reporting of the experiences of health and social care professionals when supporting parents and children during, and following, the death of a parent.
Design: A systematically constructed qualitative review and thematic synthesis. Registered on Prospero (CRD42017076345).
Data sources: MEDLINE, CINAHL, Embase, PsycINFO, PsycARTICLES and PROSPERO, searched from January 1996 to July 2018 for qualitative studies in English, containing verbatim reporting of health and social care professionals’ experiences of supporting parents and children during, and following, the death of a parent. Qualitative data were appraised using a modified Critical Appraisal Skills Programme qualitative appraisal checklist.
Results: The search yielded 15,758 articles. Of which, 15 met the inclusion criteria. A total of 13 included professionals’ experiences of supporting parents and children before parental death. Two included experiences of supporting surviving parents and children afterwards. Three analytical themes identified as follows: (1) aspiring to deliver family-focussed care, (2) health and social care professionals’ behaviours and emotions and (3) improving connections with parents and children. Connecting empathically with parents and children to prepare and support children entails significant emotional labour. Professionals seek to enhance their confidence to connect.
Conclusion: Professionals struggle to connect empathically with parents and their children to prepare and to support children when a parent is dying and afterwards. Awareness of professionals’ needs would enable provision of appropriate support for parents and children.
Purpose The purpose of the eSMART (Electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology) study is to evaluate the use of mobile phone technology to manage chemotherapy-related toxicities (CRTs) in people with breast cancer (BC), colorectal cancer (CRC), Hodgkin's lymphoma (HL), and non-Hodgkin lymphoma (NHL)) across multiple European sites. One key objective was to review the published and grey literature on assessment and management of CRTs among patients receiving primary chemotherapy for BC, CRC, HL, and NHL to ensure that ASyMS remained evidence-based and reflected current and local practice.
Methods Three electronic databases were searched for English papers, with abstracts available from 01/01/2004-05/04/2014. For the grey literature, relevant clinical practice guidelines (CPGs)/evidence-based resources (EBRs) from the main international cancer organisations were reviewed as were symptom management (SM) protocols from the sites.
Results After full-text screening, 27 publications were included. The majority (n = 14) addressed fatigue and focused on BC patients. Relevant CPGs/EBRs were found for fatigue (n = 4), nausea/vomiting (n = 5), mucositis (n = 4), peripheral neuropathy (n = 3), diarrhoea (n = 2), constipation (n = 2), febrile neutropenia/infection (n = 7), palmar plantar erythrodysesthesia (PPE) (n = 1), and pain (n = 4). SM protocols were provided by >40% of the clinical sites.
Conclusions A need exists for empirical research on SM for PPE, diarrhoea, and constipation. Research is needed on the efficacy of self-care strategies in patients with BC, CRC, HL, and NHL. In general, consistency exists across CPGs/EBRs and local guidelines on the assessment and management of common CRTs.
To estimate prevalence and severity of patients' self-perceived supportive care needs in the immediate post-treatment phase and identify predictors of unmet need.
Patients and Methods
A multicenter, prospective, longitudinal survey was conducted. Sixty-six centers recruited patients for 12 weeks. Patients receiving treatment for the following cancers were recruited: breast, prostate, colorectal, and gynecologic cancer and non-Hodgkin's lymphoma. Measures of supportive care needs, anxiety and depression, fear of recurrence, and positive and negative affect were completed at the end of treatment (T0) and 6 months later (T1).
Of 1,850 patients given questionnaire packs, 1,425 (79%) returned questionnaires at T0, and 1,152 (62%) returned questionnaires at T1. Mean age was 61 years; and most respondents were female (69%) and had breast cancer (57%). Most patients had no or few moderate or severe unmet supportive care needs. However, 30% reported more than five unmet needs at baseline, and for 60% of these patients, the situation did not improve. At both assessments, the most frequently endorsed unmet needs were psychological needs and fear of recurrence. Logistic regression revealed several statistically significant predictors of unmet need, including receipt of hormone treatment, negative affect, and experiencing an unrelated significant event between assessments.
Most patients do not express unmet needs for supportive care after treatment. Thirty percent reported more than five moderate or severe unmet needs at both assessments. Unmet needs were predicted by hormone treatment, negative mood, and experiencing a significant event. Our results suggest that there is a proportion of survivors with unmet needs who might benefit from the targeted application of psychosocial resources.
People engage in health information-seeking online when experiencing unusual or unfamiliar bodily changes. It is not well understood how people consult the Internet for health information after the onset of unfamiliar symptoms and before receiving a potential diagnosis, and how online information-seeking can help people appraise their symptoms. This lack of evidence may be partly due to methodological limitations in capturing in real time the online information-seeking process.
We explored women’s symptom attribution and online health information-seeking in response to a hypothetical and unfamiliar breast change suggestive of cancer (nipple rash). We also aimed to establish the feasibility of capturing in real time the online information-seeking process with a tool designed to track participants’ online searches and visited websites, the VIZZATATM browser tracker.
An online survey was completed by 56 cancer-free women (Mage = 60.34 years, SD = 7.73 years) responding to a scenario asking them to imagine noticing a red scaly rash on the nipple. Participants were asked to make symptom attributions when presented with the scenario (Time1) and again after seeking information online (Time2). The online tracking tool, embedded in the survey, was used to capture in real time participants’ search terms and accessed websites.
The tracking tool captured the search terms and accessed websites of most of the participants (46/56, 82%). For the rest (n=10, 18%), there was evidence of engagement in online information-seeking, e.g. medical terminology and cancer attribution at Time2, despite their searching activity not being recorded. Twenty five participants considered cancer as a potential cause for the nipple rash at Time1, yet only one of these used ‘cancer’ as a search term. Most participants (n=40, 87%) used rash-related search terms, particularly ‘nipple rash’ and ‘rash on nipple’. The majority (41/46, 89%) accessed websites containing breast cancer information, with the NHS webpage “Paget’s disease of the nipple” being the most visited one. At Time2, after engaging in the Internet search task, more participants attributed the nipple rash to breast cancer than at Time1, n=37 (66.1%) vs. n=25 (44.6%), although a small number of participants (n=6) changed from making a cancer attribution at Time1 to a non-cancer one at Time2.
Making a cancer attribution for an unfamiliar breast change did not necessarily translate into cancer-termed searches. Equally, not all Internet searches led to a cancer attribution. The findings suggest that online information-seeking may not necessarily help women who experience unfamiliar breast cancer symptoms understand their condition. Despite some technical issues, this study showed that it is feasible to use an online browser tracking tool to capture in real time information-seeking about unfamiliar symptoms.
Objectives: Walking is an adaptable, inexpensive and accessible form of physical activity. However its impact on quality of life and symptom severity in people with advanced cancer is unknown. This study aimed to assess the feasibility and acceptability of a randomised controlled trial (RCT) of a community-based walking intervention to enhance quality of life (QoL) in people with recurrent/metastatic cancer.
Design: We used a mixed-methods design comprising a two-centre RCT and nested qualitative interviews. Participants: Patients with advanced breast, prostate, gynaecological or haematological cancers randomised 1:1 between intervention and usual care.
Intervention: The intervention comprised Macmillan’s ‘Move More’ information, a short motivational interview with a recommendation to walk for at least 30 minutes on alternate days and attend a volunteer-led group walk weekly.
Outcomes: we assessed feasibility and acceptability of the intervention and RCT by evaluating study processes (rates of recruitment, consent, retention, adherence and adverse events), and using end of study questionnaires and qualitative interviews. Patient reported outcome measures (PROMS) assessing quality of life (QoL), activity, fatigue, mood and self-efficacy were completed at baseline and 6, 12 and 24 weeks.
Results: We recruited 42 (38%) of eligible participants. Recruitment was lower than anticipated (goal n=60), the most commonly reported reason being unable to commit to walking groups (n=19). Randomisation procedures worked well with groups evenly matched for age, sex and activity. By week 24, there was a 45% attrition rate. Most PROMs whilst acceptable were not sensitive to change and did not capture key benefits.
Conclusions: The intervention was acceptable, well tolerated and the study design was judged acceptable and feasible. Results are encouraging and demonstrate that exercise was popular and conveyed benefit to participants. Consequently, an effectiveness RCT is warranted, with some modifications to the intervention to include greater tailoring and more appropriate PROMs selected.
Cancer-related fatigue is a significant clinical problem and is a symptom commonly experienced by patients with differing cancer types during and following treatment. It is a distressing symptom which interferes with functioning in daily life. However, much less is known about the prevalence and severity of fatigue in prostate cancer when compared to other cancer types, such as breast cancer.
A systematic review was conducted to appraise the prevalence and severity of cancer-related fatigue in prostate cancer. Systematic searches of published quantitative research relating to the prevalence and severity of fatigue were conducted using databases, including Medline, PsychINFO, CINAHL and ISI Web of Knowledge (January 2012). Included papers measured the prevalence or severity of prostate-cancer-related fatigue and differentiated fatigue outcomes (prevalence, severity) between treatment modalities.
Nineteen studies were eligible for the review, of which 17 were cross-sectional and 2 longitudinal. Findings suggest that the prevalence of any fatigue is as high as 74 %, whilst chronic fatigue prevalence was highest (39 %) when hormone therapy was combined with radiotherapy. Fatigue severity is reported as worse in hormone therapy and treatment combining hormone therapy and radiotherapy.
Fatigue is a common symptom for men with prostate cancer, particularly those prescribed hormone therapy. A wide variety of tools were used to measure fatigue prevalence and severity, which made comparisons across studies difficult. The review is limited by methodological shortcomings in the studies included.
Background: As the number of breast cancer survivors continues to rise, Western populations become more ethnically and socially diverse and healthcare resources become ever-more stretched, follow-up that focuses on monitoring for recurrence is no longer viable. New models of survivorship care need to ensure they support selfmanagement and are culturally appropriate across diverse populations. This study explored experiences and expectations of a multi-ethnic sample of women with breast cancer regarding post-treatment care, in order to understand potential barriers to receiving care and inform new models of survivorship care.
Methods: A phenomenological qualitative research design was employed. In-depth interviews were conducted with women from diverse socio-demographic backgrounds in England, who completed treatment for breast cancer in the 12 months prior to the study. Data were analysed using Framework Analysis.
Results: Sixty-six women participated and reported expectations and needs were unmet at follow-up. Whilst there were more commonalities in experiences, discernible differences, particularly by ethnicity and age, were identified relating to three key themes: emotional responses on transition to follow-up; challenges communicating with healthcare professionals at follow-up; and challenges finding and accessing information and support services to address unmet needs.
Conclusions: There are cultural differences in the way healthcare professionals and women communicate, not necessarily differences in their post-treatment needs. We do not know if new models of care meet survivors’ needs, or if they are appropriate for everyone. Further testing and potential cultural and linguistic adaptation of models of care is necessary to ensure their appropriateness and acceptability to survivors from different backgrounds. New ways of providing survivorship care mean survivors will need to be better prepared for the post-treatment period and the role they will have to play in managing their symptoms and care.