Jo qualified as a Registered Nurse in 1985 at University College Hospital, London. She worked clinically in haematology and medical/clinical oncology before moving to St Bartholomew's & Homerton Hospitals to undertake psycho-oncology research. On completion of a BSc in Nursing Studies at The University of Hull she took up a research post at St Christopher's Hospice, London. In 2000 she was awarded a CRUK Nursing Fellowship to undertake a PhD at King's College London, during which she developed and tested a behavioural intervention for cancer-related fatigue. Subsequently she held a number of academic posts and led the Supportive Cancer Care Research Group in the Florence Nightingale Faculty of Nursing and Midwifery at King's College London. Jo joined the School of Health Sciences at the University of Surrey in 2017 as Reader and Lead for Digital Health. She also leads Digital Innovation theme for the NIHR Applied Research Collaboration for Kent Surrey & Sussex (ARC KSS). Jo has considerable expertise in clinical trials of complex interventions, including digital health interventions, mixed methods and experience based co-design methods.
Areas of specialism
University roles and responsibilities
- FHMS Theme Champion for Digital Health & Data Science
- Theme Lead for Digital Innovation for the Applied Research Collaboration for Kent, Surrey & Sussex (ARC KSS).
- School of Health Sciences Theme Lead for Digital Health
A randomised controlled trial to evaluate the effectiveness of a brief psychoeducational intervention in reducing the level of, and distress associated with, cancer-related fatigue.
02 JUL 2021
University of Surrey partners with leading public and private sector organisations to launch Guildford Digital Health Hub
11 JUL 2019
£9 million government funding announced for health and social care research to improve patient care in Kent, Surrey and Sussex
My research programme focuses on improving the health and experience of people with cancer, both during and after treatment, with a particular focus on developing and testing interventions that are feasible to deliver in routine practice. I have considerable experience of developing complex interventions and evaluating their outcomes through mixed method research designs.
Key interests are:
1) Symptom assessment and management
2) Management of co-morbid cancer and diabetes
3) Management of fear of cancer recurrence
4) Developing and implementing Digital Health solutions for health care practice
Funded by National Institute for Health Research
Funded by NIHR HS & DR, 2018-2021
Funded by Industrial Strategy Funding 2019 - 2020
Funded by NIHR RfPB, 2020-2020
Funded by DHSC/UKRI COVID-19 Rapid Response Initiative, 2020
- Prof Roma Maguire (University of Strathclyde)
- Dr Colette Hirsch (King's College London)
- Prof Gerry Humphris (University of St Andrew's)
- Prof Mel Calvert (University of Birmingham)
- Dr Derek Kyte (University of Birmingham)
- Dr Nick Courtier (University of Cardiff)
- Prof Debbie Fenlon (University of Swansea)
- Dr Suzanne Cruickshank (Royal Marsden NHS Foundation Trust)
- Prof Chris Miaskowski (University of California, San Francisco)
- Dr Eileen Furlong (University College Dublin)
- Dr Patricia Fox (University College Dublin)
- Dr Alex Gaiger (University of Vienna)
- Prof Elizabeth Patiraki (University of Athens)
- Prof Angus Forbes (King's College London)
- Dr Kirsty Winkley (King's College London)
- Prof Mieke Van Hemelrijck (King's College London)
- Dr James Green (Queen Mary's College, London)
- Prof Harm van Marwijk (Brighton & Sussex Medical School)
- Dr Elizabeth Ford (Brighton & Sussex Medical School)
- Prof Glenn Robert (King's College London
- Prof Anne Marie Rafferty (King's College London)
- Dr Elizabeth Davies (King's College London)
- Dr Rachel Hunter (University College London)
- Dr Rachel Taylor (University College Hospitals London)
Indicators of esteem
Chair of NIHR National Cancer Research Institute Psycho Oncology & Survivorship Clinical Studies Group (2012 – )
Postgraduate research supervision
Dr Hui-Ching Li: Cross-cultural application of dignity therapy for end of life care in Taiwan.2011
Dr Wladzia Cuber-Dochan: Fatigue in inflammatory bowel disease as experienced by individuals – a phenomenological study. 2015
Dr Sian Hawkins: How undergraduate preregistration nurses learn to care for people who are dying. 2016
Dr Lorraine Robinson: Women’s Experience of Living with Metastatic Breast Cancer. 2018
Dr Asmah Husaini: An exploration of specialist palliative care provided in Brunei Darussalam to advanced cancer patients using an embedded multiple ethnographic case study design. 2018
Dr Jenny Harris: Development and testing of a predictive risk stratification model for post treatment anxiety in women diagnosed with non-metastatic breast cancer.2019
Dr Katie Sutton: Developing a patient centred approach to assessing quality of life for brain cancer survivors.2021
Mary Tanay: Development and testing of a behavioural intervention to reduce the impact of chemotherapy induced peripheral neuropathy using Experience-Based Co-Design.
Sarah Gane: Determining the optimal screening method for identifying hyperglycaemia in people receiving steroids during cancer chemotherapy.
Postgraduate research supervision
Ilaria Riboldi: Monitoring students mental health at University of Milan Bicocca and University of Surrey: A comparative study.
Julia Boon: Exploring factors that influence the treatment decision making process in pregnant women who are diagnosed with cancer.
Purpose Evidence suggests patient-reported outcome (PRO) content of cancer trial protocols is frequently inadequate and non-reporting of PRO findings is widespread. This qualitative study examined the factors influencing suboptimal PRO protocol content, implementation, and reporting, and use of PRO data during clinical interactions. Methods Semi-structured interviews were conducted with four stakeholder groups: (1) trialists and chief investigators; (2) people with lived experience of cancer; (3) international experts in PRO cancer trial design; (4) journal editors, funding panellists, and regulatory agencies. Data were analysed using directed thematic analysis with an iterative coding frame. Results Forty-four interviews were undertaken. Several factors emerged that influenced effective integration of PROs into trials and subsequent findings. Participants described i) late inclusion of PROs in trial design,; ii) PROs being considered a lower priority outcome compared to survival; iii) trialists’ reluctance to collect or report PROs due to participant burden, missing data, and perceived reticence of journals to publish; iv) lack of training for staff. Strategies to address these included training research personnel and improved communication with site staff and patients regarding the value of PROs. Examples of good practice were identified. Conclusion Misconceptions relating to PRO methodology and their use may undermine their planning, collection, and reporting. There is a role for funding, regulatory, methodological, and journalistic institutions to address perceptions around the value of PROs, their position within the trial outcomes hierarchy, that PRO training and guidance is available, signposted, and readily accessible, with accompanying measures to ensure compliance with international best practice guidelines.
Study question: Does remote monitoring of the side-effects of cancer chemotherapy with more timely intervention reduce symptom burden, anxiety, supportive care needs, work limitations and increase quality of life, and self-efficacy. Methods: A multicentre randomised controlled trial in Austria, Greece, Norway, Republic of Ireland and UK was conducted over 36 months in 829 patients with non-metastatic breast cancer, colorectal cancer, Hodgkin’s Disease, or non-Hodgkin’s lymphoma receiving first-line adjuvant chemotherapy or chemotherapy for the first time in five years. Patients were randomised to remote monitoring system ASyMS (intervention group) or standard care (control group) over 6 cycles of chemotherapy. The primary outcome was symptom burden measured on the Memorial Symptom Assessment Scale (MSAS). Study answer and limitations: For the intervention group, symptom burden remained at pre-chemotherapy treatment levels, while controls reported an increase from cycle 1 onwards and hence showing a significant benefit.Analysis of MSAS sub-domains also indicated significant benefit in favour of ASyMS with reductions in global distress; psychological factors and physical symptoms. Limitations included not covering all cancers, with the highest proportion of patients having breast cancer and blinding was not possible due to the nature of the intervention. What this study adds: Our study showed significant benefit in reduction of symptom burden, anxiety, supportive care needs and increase in quality of life and self-efficacy. Remote monitoring systems will be vital for future services, particularly with blended models of care delivery arising from the COVID-19 pandemic.
Purpose Physical activity (PA) is central to self-management for people with colorectal cancer (CRC) to support health behaviour and function secondary to cancer treatment. However, there is limited evidence on how health professionals (HPs) promote PA during cancer treatment. This study aimed to investigate how and when PA is promoted throughout the chemotherapy pathway among colorectal cancer survivors. Methods A qualitative study was conducted with adults with CRC receiving chemotherapy at a large cancer centre. Cross-sectional observation of clinical consultations was conducted at four points during the chemotherapy pathway: prior, midpoint, final cycle, and 8 weeks following chemotherapy. Following completion of treatment, audio-recorded, semi-structured interviews were conducted with patients and HPs and transcribed verbatim. Codes and themes were identified and triangulated from all the data using framework analysis. Observational themes are reported and complimented by interview data. Results Throughout the chemotherapy pathway (pre, midpoint, end), many opportunities were missed by HPs to promote PA as a beneficial means to maintain functioning and ameliorate cancer treatment side effects. When discussed, PA levels were used only to determine fitness for future oncological treatment. No PA promotion was observed despite patients reporting low PA levels or treatment side effects. Post-treatment, PA promotion was more routinely delivered by HPs, as evidenced by problem-solving and onward referrals to relevant HPs. Conclusion PA promotion was largely absent during treatment despite it being a key component of patient self-management following treatment. This suggests considerable missed opportunities for HPs to provide cancer survivors with PA evidence-based interventions. Further research is necessary to identify how best to ensure PA is promoted throughout the cancer journey. Implication for cancer survivors These findings suggest many may not be receiving support to be physically active during treatment.
Introduction While some evidence exists that real-time remote symptom monitoring devices can decrease morbidity and prevent unplanned admissions in oncology patients, overall, these studies have significant methodological weaknesses. The eSMART study (electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology) is designed to specifically address these weaknesses with an appropriately powered, repeated-measures, parallel-group stratified randomised, controlled trial (RCT) of oncology patients. Methods and analysis A total of 1,108 patients scheduled to commence first-line chemotherapy (CTX) for breast, colorectal, or haematological cancer will be recruited from multiple sites across 5 European countries. Patients will be randomised (1:1) to the ASyMS intervention (intervention group) or to standard care currently available at each site (control group). Patients in the control and intervention groups will complete a demographic and clinical questionnaire, as well as a set of valid and reliable electronic patient reported outcome measures (ePROMS) at enrolment, after each of their CTX cycles (up to a maximum of 6 cycles) and at 3, 6, 9 and 12 months after completion of their sixth cycle of CTX. Outcomes that will be assessed include: symptom burden (primary outcome), quality of life (QoL), supportive care needs, anxiety, self-care self-efficacy, work limitations, and cost effectiveness and, from a health professional perspective, changes in clinical practice (secondary outcomes). Ethics and dissemination eSMART received approval from the relevant ethics committees at all of the clinical sites across the 5 participating countries. In collaboration with the European Cancer Patient Coalition (ECPC), the trial results will be disseminated through publications in scientific journals, presentations at international conferences, and postings on the eSMART website and other relevant clinician and consumer websites.
Background: Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods: This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results: This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions: For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.
Introduction Breast cancer remains a significant scientific, clinical and societal challenge. This gap analysis has reviewed and critically assessed enduring issues and new challenges emerging from recent research, and proposes strategies for translating solutions into practice. Methods More than 100 internationally recognised specialist breast cancer scientists, clinicians and healthcare professionals collaborated to address nine thematic areas: genetics, epigenetics and epidemiology; molecular pathology and cell biology; hormonal influences and endocrine therapy; imaging, detection and screening; current/novel therapies and biomarkers; drug resistance; metastasis, angiogenesis, circulating tumour cells, cancer ‘stem’ cells; risk and prevention; living with and managing breast cancer and its treatment. The groups developed summary papers through an iterative process which, following further appraisal from experts and patients, were melded into this summary account. Results The 10 major gaps identified were: (1) understanding the functions and contextual interactions of genetic and epigenetic changes in normal breast development and during malignant transformation; (2) how to implement sustainable lifestyle changes (diet, exercise and weight) and chemopreventive strategies; (3) the need for tailored screening approaches including clinically actionable tests; (4) enhancing knowledge of molecular drivers behind breast cancer subtypes, progression and metastasis; (5) understanding the molecular mechanisms of tumour heterogeneity, dormancy, de novo or acquired resistance and how to target key nodes in these dynamic processes; (6) developing validated markers for chemosensitivity and radiosensitivity; (7) understanding the optimal duration, sequencing and rational combinations of treatment for improved personalised therapy; (8) validating multimodality imaging biomarkers for minimally invasive diagnosis and monitoring of responses in primary and metastatic disease; (9) developing interventions and support to improve the survivorship experience; (10) a continuing need for clinical material for translational research derived from normal breast, blood, primary, relapsed, metastatic and drug-resistant cancers with expert bioinformatics support to maximise its utility. The proposed infrastructural enablers include enhanced resources to support clinically relevant in vitro and in vivo tumour models; improved access to appropriate, fully annotated clinical samples; extended biomarker discovery, validation and standardisation; and facilitated cross-discipline working. Conclusions With resources to conduct further high-quality targeted research focusing on the gaps identified, increased knowledge translating into improved clinical care should be achievable within five years.
Patient-reported outcomes (PROs) are used in clinical trials to assess the effectiveness and tolerability of interventions. Inclusion of participants from different ethnic backgrounds is essential for generalisability of cancer trial results. PRO data collection should include appropriately translated patient-reported outcome measures (PROMs) to minimise missing data and sample attrition. Protocols and/or publications from cancer clinical trials using a PRO endpoint and registered on the National Institute for Health Research Portfolio were systematically reviewed for information on recruitment, inclusion of ethnicity data, and use of appropriately translated PROMs. Semi-structured interviews were conducted with key stakeholders to explore barriers and facilitators for optimal PRO trial design, diverse recruitment and reporting, and use of appropriately translated PROMs. Eighty-four trials met the inclusion criteria, only 14 (17%) (n = 4754) reported ethnic group data, and ethnic group recruitment was low, 611 (13%). Although 8 (57%) studies were multi-centred and multi-national, none reported using translated PROMs, although available for 7 (88%) of the studies. Interviews with 44 international stakeholders identified a number of perceived barriers to ethnically diverse recruitment including diverse participant engagement, relevance of ethnicity to research question, prominence of PROs, and need to minimise investigator burden. Stakeholders had differing opinions on the use of translated PROMs, the impact of trial designs, and recruitment strategies on diverse recruitment. Facilitators of inclusive research were described and examples of good practice identified. Greater transparency is required when PROs are used as primary or secondary outcomes in clinical trials. Protocols and publications should demonstrate that recruitment was accessible to diverse populations and facilitated by trial design, recruitment strategies, and appropriate PROM usage. The use of translated PROMs should be made explicit when used in cancer clinical trials.
Chemotherapy-induced peripheral neuropathy (CIPN) can result in functional difficulties. Pharmacological interventions used to prevent CIPN either show low efficacy or lack evidence to support their use and to date, duloxetine remains the only recommended treatment for painful CIPN. Non-pharmacological interventions such as exercise and behavioural interventions for CIPN exist. The aims were to (1) identify and appraise evidence on existing behavioural and exercise interventions focussed on preventing or managing CIPN symptoms, (2) describe psychological mechanisms of action by which interventions influenced CIPN symptoms, (3) determine the underpinning conceptual models that describe how an intervention may create behaviour change, (4) identify treatment components of each intervention and contextual factors, (5) determine the nature and extent of patient and clinician involvement in developing existing interventions and (6) summarise the relative efficacy or effectiveness of interventions to lessen CIPN symptoms and to improve quality of life, balance and muscle strength. A systematic search of Ovid Medline, Cochrane Library, EMBASE, PsycINFO, Health Management Information Consortium, Global Health and CINAHL was performed to identify articles published between January 2000 to May 2020, followed by OpenGrey search and hand-searching of relevant journals. Studies that explored behavioural and/or exercise interventions designed to prevent or improve symptoms of CIPN in adults who had received or were receiving neurotoxic chemotherapy for any type of cancer, irrespective of when delivered within the cancer pathway were included. Nineteen randomised controlled trials and quasi-experimental studies which explored behavioural (n=6) and exercise (n=13) interventions were included. Four studies were rated as methodologically strong, ten were moderate and five were weak. Ten exercise and two behavioural interventions, including those that improved CIPN knowledge and self-management resources and facilitated symptom self-reporting, led to reduced CIPN symptoms during and/or after chemotherapy treatment. The extent of potential benefits from the interventions was difficult to judge, due to study limitations. Future interventions should incorporate a clear theoretical framework and involve patients and clinicians in the development process. Our findings show exercise interventions have beneficial effects on CIPN symptoms although higher quality research is warranted. Behavioural interventions that increase patient's CIPN knowledge, improve self-management capacity and enable timely access to symptom management led to reduced CIPN symptoms.
Background Fear of recurrence (FoR) is a major concern for patients following treatment for primary breast cancer, affecting 60–99% of breast cancer survivors. Mini-AFTER is a brief intervention developed to address this fear, that breast care nurses are ideally placed to deliver. However, their interest in delivering such an intervention is unknown and crucial to its introduction. This study aims to assess the perceived feasibility of the Mini-AFTER telephone intervention for implementation by breast care nurses to manage moderate levels of fear of recurrence among breast cancer survivors. Methods A sequential explanatory mixed-methods design will be used, informed by normalisation process theory (NPT). The design will be guided by the stages of NPT. Specifically, understanding and evaluating the process (implementation) that would enable an intervention, such as the Mini-AFTER, not only to be operationalised and normalised into everyday work (embedded) but also sustained in practice (integration). Phase 1: all members on the UK Breast Cancer Care Nursing Network database (n = 905) will be emailed a link to a web-based survey, designed to investigate how breast cancer survivors’ FoR is identified and managed within current services and their willingness to deliver the Mini-AFTER. Phase 2: a purposive sample of respondents (n = 20) will be interviewed to build upon the responses in phase 1 and explore breast care nurses’ individual views on the importance of addressing fear of recurrence in their clinical consultations, interest in the Mini-AFTER intervention, the content, skills required and challenges to deliver the intervention. Discussion This study will provide information about the willingness of breast care nurses (BCNs) to provide a structured intervention to manage fear of recurrence. It will identify barriers and facilitators for effective delivery and inform the future design of a larger trial of the Mini-AFTER intervention.
Background Fatigue is rated as the most distressing side effect of radiotherapy treatment for curable breast cancer. About four-in-ten women treated experience fatigue, which can last for years after treatment. The impact of this debilitating tiredness is loss of independence and impaired physical and mental function. Our study will take a behavioural intervention with demonstrated effect in treating fatigue in a mixed group of chemotherapy patients and adapt it for women undergoing radiotherapy for early breast cancer. The purpose of this trial is to evaluate the feasibility of delivering the intervention in the radiotherapy pathway for patients at a high risk of fatigue and to explore participants’ experiences of the trial and intervention. Methods A pragmatic single-site non-blinded feasibility trial of a behavioural intervention. Main inclusion criteria are prescription of the UK standard 40Gy in 15 fractions over three weeks radiotherapy (± tumour bed boost) for early (stage 0-IIIa) breast cancer. The total projected sample size after attrition is 70. A previously developed fatigue risk score tool will be used to predict individual’s likelihood of experiencing fatigue. Thirty women predicted to be at a high risk of experiencing significant fatigue will be allocated in the ratio 2:1 to the behavioural intervention or education trial arms, respectively. These feasibility trial participants will be assessed at baseline, after 10 and 15 fractions of radiotherapy, and 10 days, three weeks and six months after radiotherapy. A further 40 women predicted to be at a lower risk of fatigue will join a risk score validation group. Measures to assess feasibility include recruitment, retention and completion rates and variation in implementation of the intervention. Process evaluation with intervention providers and users includes fidelity and adherence checks and qualitative interviews to understand how changes in behaviour are initiated and sustained. Discussion This feasibility study collates data to both inform the progression to and design of a future definitive trial and to refine the intervention. Trial registration: ISRCTN 10303368. Registered August 2017 (retrospectively registered); Health and Care Research Wales Clinical Research Portfolio (CRP) registration 31419.
Background Fear of cancer recurrence (FCR) is common in people affected by breast cancer. FCR is associated with increased health service and medication use, anxiety, depression and reduced quality of life. Existing interventions for FCR are time and resource intensive, making implementation in a National Health Service (NHS) setting challenging. To effectively manage FCR in current clinical practice, less intensive FCR interventions are required. Mini-AFTERc is a structured 30-min counselling intervention delivered over the telephone and is designed to normalise moderate FCR levels by targeting unhelpful behaviours and misconceptions about cancer recurrence. This multi-centre non-randomised controlled pilot trial will investigate the feasibility of delivering the Mini-AFTERc intervention, its acceptability and usefulness, in relation to specialist breast cancer nurses (SBCNs) and patients. This protocol describes the rationale, methods and analysis plan for this pilot trial of the Mini-AFTERc intervention in everyday practice. Methods This study will run in four breast cancer centres in NHS Scotland, two intervention and two control centres. SBCNs at intervention centres will be trained to deliver the Mini-AFTERc intervention. Female patients who have completed primary breast cancer treatment in the previous 6 months will be screened for moderate FCR (FCR4 score: 10‑14). Participants at intervention centres will receive the Mini-AFTERc intervention within 2 weeks of recruitment. SBCNs will audio record the intervention telephone discussions with participants. Fidelity of intervention implementation will be assessed from audio recordings. All participants will complete three separate follow-up questionnaires assessing changes in FCR, anxiety, depression and quality of life over 3 months. Normalisation process theory (NPT) will form the framework for semi-structured interviews with 20% of patients and all SBCNs. Interviews will explore participants’ experience of the study, acceptability and usefulness of the intervention and factors influencing implementation within clinical practice. The ADePT process will be adopted to systematically problem solve and refine the trial design. Discussion Findings will provide evidence for the potential effectiveness, fidelity, acceptability and practicality of the Mini-AFTERc intervention, and will inform the design and development of a large randomised controlled trial (RCT).
Predictive risk models are advocated in psychosocial oncology practice to provide timely and appropriate support to those likely to experience the emotional and psychological consequences of cancer and its treatments. New digital technologies mean that large scale and routine data collection are becoming part of everyday clinical practice. Using these data to try to identify those at greatest risk for late psychosocial effects of cancer is an attractive proposition in a climate of unmet need and limited resource. In this paper, we present a framework to support the development of high-quality predictive risk models in psychosocial and supportive oncology. The aim is to provide awareness and increase accessibility of best practice literature to support researchers in psychosocial and supportive care to undertake a structured evidence-based approach.
Objective: To develop a predictive risk model (PRM) for patient-reported anxiety after treatment completion for early stage breast cancer suitable for use in practice and underpinned by advances in data science and risk prediction. Methods: Secondary analysis of a prospective survey of > 800 women at the end of treatment and again 6 months later using patient reported outcome (PRO) the hospital anxiety and depression scale-anxiety (HADS-A) and > 20 candidate predictors. Multiple imputation using chained equations (for missing data) and least absolute shrinkage and selection operator (LASSO) were used to select predictors. Final multivariable linear model performance was assessed (R2) and bootstrapped for internal validation. Results: Five predictors of anxiety selected by LASSO were HADS-A (Beta 0.73; 95% CI 0.681, 0.785); HAD-depression (Beta 0.095; 95% CI 0.020, 0.182) and having caring responsibilities (Beta 0.488; 95% CI 0.084, 0.866) increased risk, whereas being older (Beta - 0.010; 95% CI -0.028, 0.004) and owning a home (Beta 0.432; 95% CI -0.954, 0.078) reduced the risk. The final model explained 60% of variance and bias was low (- 0.006 to 0.002). Conclusions: Different modelling approaches are needed to predict rather than explain patient reported outcomes. We developed a parsimonious and pragmatic PRM. External validation is required prior to translation to digital tool and evaluation of clinical implementation. The routine use of PROs and data driven PRM in practice provides a new opportunity to target supportive care and specialist interventions for cancer patients.
Background: There are over 25 million people worldwide living with or beyond cancer and this number is increasing. Cancer survivors face a range of problems following primary treatment. One of the most frequently reported and distressing symptoms experienced by cancer survivors is fatigue. There is growing support for survivors who are experiencing problems after cancer treatment to engage in supported self-management. To date there is some evidence of effective interventions to manage fatigue in this population; however, to our knowledge there are no online resources that draw on this information to support self-management of fatigue. This paper describes the protocol for an exploratory randomized controlled trial of an online intervention to support self-management of cancer-related fatigue after primary cancer treatment. Methods/design: This is a parallel-group two-armed (1:1) exploratory randomized controlled trial including 125 cancer survivors experiencing fatigue (scoring ≥4 on a unidimensional 11-point numeric rating scale for fatigue intensity) within five years of primary treatment completion with curative intent. Participants will be recruited from 13 NHS Trusts across the UK and randomized to either the online intervention (RESTORE), or a leaflet comparator (Macmillan Cancer Backup, Coping with Fatigue). The primary outcome is a change in Perceived Self-Efficacy for Fatigue Self-Management (as measured by the Perceived Self-Efficacy for Fatigue Self-Management Instrument). Secondary outcomes include impact on perception and experience of fatigue (measured by the Brief Fatigue Inventory), and quality of life (measured by the Functional Assessment of Cancer Therapy - General and the Personal Wellbeing Index). Outcome measures will be collected at baseline, 6 weeks (completion of intervention), and 3 months. Process evaluation (including telephone interviews with recruiting staff and participants) will determine acceptability of the intervention and trial processes. Discussion: Data from this trial will be used to refine the intervention and contribute to the design of an effectiveness trial. This intervention will be expanded to address other cancer-related problems important to cancer survivors following primary cancer treatment.
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.
Purpose This study evaluated the effects of coping skills training (CST) on symptoms of depression and anxiety in cancer patients, and investigated moderators of the effects. Methods Overall effects and intervention-related moderators were studied in meta-analyses of pooled aggregate data from 38 randomized controlled trials (RCTs). Patient-related moderators were examined using linear mixed-effect models with interaction tests on pooled individual patient data (n = 1953) from 15 of the RCTs. Results CST had a statistically significant but small effect on depression (g = −0.31,95% confidence interval (CI) = −0.40;-0.22) and anxiety (g = −0.32,95%CI = -0.41;-0.24) symptoms. Effects on depression symptoms were significantly larger for interventions delivered face-to-face (p = .003), led by a psychologist (p = .02) and targeted to patients with psychological distress (p = .002). Significantly larger reductions in anxiety symptoms were found in younger patients (pinteraction ˂ 0.025), with the largest reductions in patients ˂50 years (β = −0.31,95%CI = -0.44;-0.18) and no significant effects in patients ≥70 years. Effects of CST on depression (β = −0.16,95%CI = -0.25;-0.07) and anxiety (β = −0.24,95%CI = -0.33;-0.14) symptoms were significant in patients who received chemotherapy but not in patients who did not (pinteraction ˂ 0.05). Conclusions CST significantly reduced symptoms of depression and anxiety in cancer patients, and particularly when delivered face-to-face, provided by a psychologist, targeted to patients with psychological distress, and given to patients who were younger and received chemotherapy.
Background 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. Results 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. Conclusion 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.
Background: No systematic review has focused on conceptual models underpinning advance care planning for patients with advanced cancer, and the mechanisms of action in relation to the intended outcomes. Aim: To appraise conceptual models and develop a logic model of advance care planning for advanced cancer patients, examining the components, processes, theoretical underpinning, mechanisms of action and linkage with intended outcomes. Design: A systematic review of randomised controlled trials was conducted, and was prospectively registered on PROSPERO. Narrative synthesis was used for data analysis. Data sources: The data sources were MEDLINE, CINAHL, PsycINFO, EMBASE, CENTRAL, PROSPERO, CareSearch, and OpenGrey with reference chaining and hand-searching from inception to 31 March 2017, including all randomised controlled trials with advance care planning for cancer patients in the last 12 months of life. Cochrane quality assessment tool was used for quality appraisal. Results: Nine randomised controlled trials were included, with only four articulated conceptual models. Mechanisms through which advance care planning improved outcomes comprised (1) increasing patients’ knowledge of end-of-life care, (2) strengthening patients’ autonomous motivation, (3) building patients’ competence to undertake end-of-life discussions and (4) enhancing shared decision-making in a trustful relationship. Samples were largely highly educated Caucasian. Conclusion: The use of conceptual models underpinning the development of advance care planning is uncommon. When used, they identify the individual behavioural change. Strengthening patients’ motivation and competence in participating advance care planning discussions are key mechanisms of change. Understanding cultural feasibility of the logic model for different educational levels and ethnicities in non-Western countries should be a research priority.
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.
Assessment of psychological distress by patient report is necessary to meet patients' needs throughout the cancer journey. We have previously developed an item bank to assess psychological distress but not evaluated it for cancer survivors. Our first aim in this study was to test whether we could extend our item bank to include cancer survivors. The second aim was to examine whether the item bank could assess positive affect as a single construct alongside negative psychological symptoms. Methods Responses from 1315 cancer survivors to the Hospital Anxiety and Depression Scale (HADS) and the Positive and Negative Affect Scale (PANAS) were considered for inclusion in a pre-existing item bank created from a heterogeneous sample of 4914 cancer patients. Differential item functioning (DIF) was used to assess whether HADS responses drawn from the two samples were equivalent. Common-item equating was used to anchor the shared (HADS) items, whilst the PANAS items were added. Item fit was evaluated at each stage, and misfitting items were removed. Unidimensionality was assessed with a principal components factor analysis. Results The DIF analysis did not reveal any differences between the HADS item locations from the two samples. Three misfitting PANAS items were removed, resulting in a final unidimensional bank of 80 items with good internal reliability (α = 0.85). Conclusion The new item bank is valid for use across the cancer journey, including cancer survivors, and modestly improves the assessment of all levels of psychological distress and positive psychological function.
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.
Purpose This study aims to describe the supportive care needs of informal caregivers (ICG) of adult bone marrow transplant (BMT) patients. In addition, we explored relationships between levels of unmet need, psychological morbidity and patient and ICG characteristics. Methods and sample We invited patients within 24 months of BMT to participate in a cross-sectional survey. Consenting patients asked their ICG to complete and return the questionnaire booklet. Measures included the Supportive Care Needs Survey Partners and Carers and General Health Questionnaire. Key results Two hundred patients were approached, and 98 completed questionnaires were received (response rate = 49 %). We found high unmet need and psychological morbidity among ICGs and an association between ICG unmet need and psychological morbidity. Patient functioning, particularly anxiety and depression, sexual dysfunction and resumption of usual activities impacted on ICG unmet need and psychological morbidity. No associations were found between ICG unmet need and psychological morbidity and the following variables: type of BMT, time from BMT, ICG gender, number of dependents and patient age. Conclusion ICG of BMT patients have high levels of unmet need and psychological morbidity in the months that follow a BMT. This highlights the importance of thorough needs assessment to ensure limited resources are targeted to those most in need.
Context: 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.
Introduction: Patient-reported outcomes (PROs) are increasingly included within cancer clinical trials. If appropriately collected, analysed and transparently reported these data might provide invaluable evidence to inform patient care. However there is mounting indication the design and reporting of PRO data in cancer trials may be suboptimal. This programme of research will establish via three interlinked studies whether these findings are applicable to UK cancer trials, and if so, how to best enhance the way PROs are assessed, managed and reported in clinical trials. This study will explore with key stakeholders factors that influence optimal PRO protocol content, implementation and reporting; and make recommendations for training and guidance. Methods and analysis: Semi-structured interviews will be conducted with members of key stakeholder groups. The purposive sample of up to 48 participants will include: (1) trial Chief Investigators, trial management group (TMG) members, statisticians and research nurses (RNs) of cancer trials including primary or secondary PRO, recruited via the National Cancer Research Institute (NCRI) Clinical Studies Group and Consumer Liaison Group and the UK Clinical Research Collaboration Registered UK Clinical Trial Unit (UKCRC-UKCTU) Network; (2) NCRI CLG members; (3) international experts in PRO oncology trial design and (4) journal editors and funding bodies. Data will be analysed using directed thematic analysis employing a coding frame and modified as analysis progresses. Formal triangulation of coding and member checking will be employed to enhance credibility. Ethics and dissemination: This study was approved by the University of Birmingham Ethics Committee (Ref: ERN_17-0085). Findings will be disseminated via conference presentations, peer-review journals, patient groups and social media (@CPROR_UoB; http://www.birmingham.ac.uk/cpror). Strengths and limitations • This novel study will capture perspectives on the barriers and enablers of optimal PRO practice from a comprehensive range of stakeholders with experience of PRO data collection and reporting. • The semi-structured interview format ensures a replicable process while allowing sufficient freedom to explore new and emerging concepts. • The recruitment strategy involves seeking participants through networks occupied by EPiC Senior Management Group members. However, any limitation to sample representativeness and diversity will be mediated through the use of other recruitment avenues including the authorship lists of the protocols/publications included in Phase I. • Study is at risk of self-selection and social-desirability bias. Participants are likely to take part if they have a pre-existing interest in PROs specifically and when recounting their experiences and insights are likely to wish to portray themselves in a positive manner due to the nature of this study.
Purpose There are two million people in the UK living with cancer and this figure is rising each year. The consequences of cancer and its treatment are devastating and many patients suffer long-term effects for years after completion of treatment. National UK policy recognises that current follow-up fails to meet patients' survivorship needs and new methods of service-delivery are required. An analysis of local service provision in a London teaching hospital demonstrated that the needs of patients with lymphoma were not being met. The aim of this project was to develop a nurse-led service that would provide comprehensive survivorship care for patients with lymphoma. Method A nurse-led survivorship service was implemented using a comprehensive service development framework and was evaluated through a variety of methods such as a patient satisfaction questionnaire, note audit, waiting time audit and an analysis of patients comment and suggestions. Results The project was successfully implemented with risk management and advanced practice requirements addressed. It was demonstrated that patients were satisfied with the new service, the quality of documentation had improved and waiting times were reduced. Conclusion This work adds to the current survivorship knowledge-base and provides evidence that nurses can provide safe and effective survivorship care for patients with lymphoma.
Background: Patients who have completed initial cancer treatment (cancer survivors) have been relatively neglected. We need data to help us better understand the needs of this group and to underpin evidence-based service development. Methods: Scoping reviews of research published in the last two decades focussing on the problems faced by cancer survivors, and the effectiveness of interventions for these problems were undertaken. The aim was to identify what we know, what we do not know and opportunities where research could provide new information. We searched for, retrieved and rapidly appraised systematic reviews sourced from the most common electronic databases supplemented by more recently published individual studies. Results: The research evidence is surprisingly limited. We have some knowledge of the prevalence and nature of depression, pain and fatigue in cancer survivors. We know much less about cognitive and physical impairment, employment, financial well-being and relationships. Even where we have evidence, it is mostly of only moderate quality, is most often only for breast cancer and focuses almost exclusively on the early phase of survivorship. We have good evidence for the effectiveness of drug treatments for pain and moderate evidence for fatigue and depression, but not for other symptoms. Interventions based on rehabilitative and self-management approaches remain in the early stages of evaluation. Interpretation: There has been a substantial amount of research describing many of the problems experienced by the cancer survivors. This is strongest in the area of symptoms in the period soon after treatment. However, the quality of the evidence is often poor, and some topics have been little examined. We urgently need data on the natural evolution and scale of the problems of cancer survivors obtained from well-designed, large-scale cohort studies and the robust testing of interventions in clinical trials. Given the current financially constrained research funding environment, we suggest areas in which strategic investment might give findings that have the potential to make a major impact on patient well-being in a 5-year time scale.
Some oncology outpatients experience a higher number of and more severe symptoms during chemotherapy (CTX). However, little is known about whether this high risk phenotype persists over time. Latent transition analysis (LTA) was used to examine the probability that patients remained in the same symptom class when assessed prior to the administration of and following their next dose of CTX. For the patients whose class membership remained consistent, differences in demographic and clinical characteristics, and quality of life (QOL) were evaluated. The Memorial Symptom Assessment Scale (MSAS) was used to evaluate symptom burden. LTA was used to identify subgroups of patients with distinct symptom experiences based on the occurrence of the MSAS symptoms. Of the 906 patients evaluated, 83.9% were classified in the same symptom occurrence class at both assessments. Of these 760 patients, 25.0% were classified as Low-Low, 44.1% as Moderate-Moderate and 30.9% as High-High. Compared to the Low-Low class, the other two classes were younger, more likely to be women and to report child care responsibilities, and had a lower functional status and a higher comorbidity scores. The two higher classes reported lower QOL scores. The use of LTA could assist clinicians to identify higher risk patients and initiate more aggressive interventions.
Purpose The purpose of this study was to identify the treatment-associated problems that most impact on patients undergoing cancer chemotherapy, how problems relate to experiences of supportive care and variations in experience between cancer treatment centres. Methods A survey administered to patients at six cancer centres in England explored variations of prevalence of 17 cancer chemotherapy-associated problems and associated supportive care. Problem items were identified as the most frequently experienced and severe when experienced in a scoping and consensus exercise. A health-related quality of life (HRQoL) measure, the EQ5D, was included to measure impact of problems. Results A total of 363 completed questionnaires were returned (response rate 43 %, median 61 %). The most prevalent problem was ‘tiredness/fatigued’ (90 %), followed by ‘changes in taste & smell’ (69 %) and ‘difficulty managing everyday tasks’ (61 %). Significant variations in problem prevalence existed between centres, and some common problems were rarely reported in the literature. Regression analysis found that almost all problems were significantly associated with HRQoL, with social/emotional problems having as much impact on HRQoL as physical/psychological side effects of treatment. Greatest effect size was for difficulty managing everyday tasks. Respondents reported significant variations in supportive care between centres, with more supportive care received for physical/psychological problems than for social/emotional problems. Findings indicated that patients who received increased supportive care experienced less severe problems. Conclusion The most common and distressing chemotherapy-associated problems were identified. These problems are mitigated by quality supportive care. Routine measurement and monitoring of problem items and supportive care are warranted to facilitate benchmarking and service improvements both within and between cancer centres.
Context 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.
Objectives Both prostate cancer (PCa) and type 2 diabetes mellitus (T2DM) are increasingly prevalent conditions, which frequently coexist in men. Here, we set out to specifically examine the impact of a PCa diagnosis and its treatment on T2DM treatment. Setting This study uses observational data from Prostate Cancer database Sweden Traject. Participants The study was undertaken in a cohort of 16 778 men with T2DM, of whom 962 were diagnosed with PCa during mean follow-up of 2.5 years. Primary and secondary outcome measures We investigated the association between PCa diagnosis and escalation in T2DM treatment in this cohort. A treatment escalation was defined as a new or change in anti-T2DM prescription, as recorded in the prescribed drug register (ie, change from diet to metformin or sulphonylurea or insulin). We also investigated how PCa diagnosis was associated with two treatment escalations. Multivariate Cox proportional hazards regression with age as a time scale was used while adjusting for educational level and initial T2DM treatment. Results We found no association between PCa diagnosis and risk of a single treatment escalation (HR 0.99, 95% CI 0.87 to 1.13). However, PCa diagnosis was associated with an increased risk of receiving two consecutive T2DM treatment escalations (HR 1.75, 95% CI 1.38 to 2.22). This increase was strongest for men on gonadotropin-releasing hormone (GnRH) agonists (HR 3.08, 95% CI 2.14 to 4.40). The corresponding HR for men with PCa not on hormonal treatment was 1.40 (95% CI 1.03 to 1.92) and for men with PCa on antiandrogens 0.91 (95% CI 0.29 to 2.82). Conclusions Men with T2DM who are diagnosed with PCa, particularly those treated with GnRH agonists, were more likely to have two consecutive escalations in T2DM treatment. This suggests a need for closer monitoring of men with both PCa and T2DM, as coexistence of PCa and its subsequent treatments could potentially worsen T2DM control.
Objective: This meta-ethnography synthesises the evidence on the experiences, needs and concerns of younger women with breast cancer. Methods: Using a method called ‘reciprocal translation’ we developed a conceptual model to reflect the local and social contexts, issues, processes, needs and concerns of importance in this literature. Findings: Key findings relate to the particular point in the life-course at which young women with breast cancer stand. Issues for these women relate to feeling different as a result of cancer, fear of recurrence, feeling ‘out of sync’ and altered embodied subjectivity. Young women with breast cancer use three processes to integrate the changes that cancer brings, namely, balancing, normalising and changing. Our conceptual model also highlights young women's needs, primarily for support, information, childcare, counselling and spiritual support. Areas of reproduction, fertility and sexuality were also of particular concern. The included papers have methodological limitations that impact on our findings, such as opportunistic data analyses, lack of theoretical frameworks and limited reference to socio-cultural factors. Conclusion: The conceptual model developed as a result of this meta-ethnography provides a basis for practitioners to address these young women's concerns more adequately and comprehensively.
Oncology patients undergoing cancer treatment experience an average of fifteen unrelieved symptoms that are highly variable in both their severity and distress. Recent advances in Network Analysis (NA) provide a novel approach to gain insights into the complex nature of co-occurring symptoms and symptom clusters and identify core symptoms. We present findings from the first study that used NA to examine the relationships among 38 common symptoms in a large sample of oncology patients undergoing chemotherapy. Using two different models of Pairwise Markov Random Fields (PMRF), we examined the nature and structure of interactions for three different dimensions of patients’ symptom experience (i.e., occurrence, severity, distress). Findings from this study provide the first direct evidence that the connections between and among symptoms differ depending on the symptom dimension used to create the network. Based on an evaluation of the centrality indices, nausea appears to be a structurally important node in all three networks. Our findings can be used to guide the development of symptom management interventions based on the identification of core symptoms and symptom clusters within a network.
This study explored lived experiences of women who developed chemotherapy-induced peripheral neuropathy (CIPN) following treatment for breast and ovarian cancer. It also explored cancer survivors’ perceptions of information and advice offered by clinicians about CIPN and for managing CIPN. The study was advertised through cancer charity websites and social media accounts. Purposeful, convenience sampling was carried out using set eligibility criteria. Individuals with diagnosis of breast or ovarian cancer who experienced or are still experiencing CIPN were recruited. Fifteen semi-structured interviews were conducted. Data were analysed using interpretative phenomenological analysis (IPA). Similar to previous studies, participants used comparisons to describe their symptoms. Four main themes emerged from the analysis: (1) struggle to process CIPN information, (2) information and trust are key in the treatment decision-making process, (3) experience of symptom-reporting and (4) challenges of managing symptoms. Findings suggest interventions to improve understanding of CIPN risk are needed in practice. A better and broader understanding of the patient experience of CIPN could pave the way for improved communication, assessment and management of symptoms. Results suggest the need for interventions to guide cancer survivors to recognise and report CIPN symptoms early and address the impact of CIPN symptoms in their lives.
Objective: This individual patient data (IPD) meta-analysis aimed to evaluate the effects of psychosocial interventions (PSI) on quality of life (QoL), emotional function (EF) and social function (SF) in patients with cancer, and to study moderator effects of demographic, clinical, personal, and intervention-related characteristics. Methods: Relevant studies were identified via literature searches in four databases. We pooled IPD from 22 (n=4,217) of 61 eligible randomized controlled trials (RCTs). Linear mixed-effect model analyses were used to study intervention effects on the post-intervention values of QoL, EF, and SF (z-scores), adjusting for baseline values, age, and cancer type. We studied moderator effects by testing interactions with the intervention for demographic, clinical, personal, and intervention-related characteristics, and conducted subsequent stratified analyses for significant moderator variables. Results: PSI significantly improved QoL (β=0.14,95%CI=0.06;0.21), EF (β=0.13,95%CI=0.05;0.20), and SF (β=0.10,95%CI=0.03;0.18). Significant differences in effects of different types of PSI were found, with largest effects of psychotherapy. The effects of coping skills training (CST) were moderated by age, treatment type, and targeted interventions. Effects of psychotherapy on EF may be moderated by cancer type, but these analyses were based on two RCTs with small sample sizes of some cancer types. Conclusions: PSI significantly improved QoL, EF, and SF, with small overall effects. However, the effects differed by several demographic, clinical, personal, and intervention-related characteristics. Our study highlights the beneficial effects of CST in patients treated with chemotherapy, the importance of targeted interventions, and the need of developing interventions tailored to the specific needs of elderly patients.
The aim of this review was to systematically identify, appraise and synthesise qualitative research evidence on the experience of adult cancer patients living with chemotherapy-induced peripheral neuropathy (CIPN). A systematic search of the literature was performed in September 2015. Qualitative studies were included if they investigated CIPN and patient experience. Quality of the articles was appraised using an adapted version of the Critical Appraisal Skill Programme Checklist for Qualitative Research (CASP 2014). Themes were identified using the thematic synthesis approach proposed by Thomas and Harden [BMC Medical Research Methodology 8 (2008) 45]. Five articles presented findings generated by 88 patients who had all received neurotoxic chemotherapy. Sample sizes from included studies varied from 1 to 28 patients; all studies originated from America and were published between 2005 and 2015. Four analytical themes emerged: (1) CIPN is an unclear experience, (2) a less important risk, (3) impact on quality of life and (4) a feature of cancer survivorship. In conducting this synthesis, the lack of qualitative evidence in this specific condition is evident. Further studies are needed outside of America, to focus on CIPN risk communication approaches by healthcare professionals, patient understanding and perception of CIPN risk and interventions to promote early detection of CIPN including effective reporting and assessment.
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.
Background Cancer and Diabetes Mellitus (DM) are leading causes of death worldwide and the prevalence of both is escalating. People with co-morbid cancer and DM have increased morbidity and premature mortality compared with cancer patients with no DM. The reasons for this are likely to be multifaceted but will include the impact of hypo/hyperglycaemia and diabetes therapies on cancer treatment and disease progression. A useful step toward addressing this disparity in treatment outcomes is to establish the impact of cancer treatment on diabetes control. Aim The aim of this review is to identify and analyse current evidence reporting glycaemic control (HbA1c) during and after cancer treatment. Methods Systematic searches of published quantitative research relating to comorbid cancer and type 2 diabetes mellitus were conducted using databases, including Medline, Embase, PsychINFO, CINAHL and Web of Science (February 2017). Full text publications were eligible for inclusion if they: were quantitative, published in English language, investigated the effects of cancer treatment on glycaemic control, reported HbA1c (%/mmols/mol) and included adult populations with diabetes. Means, standard deviations and sample sizes were extracted from each paper; missing standard deviations were imputed. The completed datasets were analysed using a random effects model. A mixed-effects analysis was undertaken to calculate mean HbA1c (%/mmols/mol) change over three time periods compared to baseline. Results The available literature exploring glycaemic control post-diagnosis was mixed. There was increased risk of poor glycaemic control during this time if studies of surgical treatment for gastric cancer are excluded, with significant differences between baseline and 12 months (p < 0.001) and baseline and 24 months (p = 0.002). Conclusion We found some evidence to support the contention that glycaemic control during and/or after non-surgical cancer treatment is worsened, and the reasons are not well defined in individual studies. Future studies should consider the reasons why this is the case.
Introduction: Emerging evidence suggests that patient-reported outcome (PRO)-specific information may be omitted in trial protocols and that PRO results are poorly reported, limiting the use of PRO data to inform cancer care. This study aims to evaluate the standards of PRO-specific content in UK cancer trial protocols and their arising publications and to highlight examples of best-practice PRO protocol content and reporting where they occur. The objective of this study is to determine if these early findings are generalisable to UK cancer trials, and if so, how best we can bring about future improvements in clinical trials methodology to enhance the way PROs are assessed, managed and reported. Hypothesis: Trials in which the primary end point is based on a PRO will have more complete PRO protocol and publication components than trials in which PROs are secondary end points. Methods and analysis: Completed National Institute for Health Research (NIHR) Portfolio Cancer clinical trials (all cancer specialities/age-groups) will be included if they contain a primary/secondary PRO end point. The NIHR portfolio includes cancer trials, supported by a range of funders, adjudged as high-quality clinical research studies. The sample will be drawn from studies completed between 31 December 2000 and 1 March 2014 (n=1141) to allow sufficient time for completion of the final trial report and publication. Two reviewers will then review the protocols and arising publications of included trials to: (1) determine the completeness of their PRO-specific protocol content; (2) determine the proportion and completeness of PRO reporting in UK Cancer trials and (3) model factors associated with PRO protocol and reporting completeness and with PRO reporting proportion. Ethics and dissemination: The study was approved by the ethics committee at University of Birmingham (ERN_15-0311). Trial findings will be disseminated via presentations at local, national and international conferences, peer-reviewed journals and social media including the CPROR twitter account and UOB departmental website (http://www.birmingham.ac.uk/cpro0r).
Increasing numbers of people in the UK are living with recurrent or metastatic cancer, many of whom experience reduced quality of life resulting from the physical and psychosocial consequences of cancer and its treatment. While drug treatments are important at alleviating some symptoms, there is increasing evidence of the benefits of exercise in enhancing quality of life and health outcomes. Walking is an inexpensive and accessible form of exercise. To our knowledge, no studies have investigated whether a walking intervention is sufficient to enhance quality of life and alleviate symptoms in people with recurrent or metastatic cancer across a range of tumor types. This paper describes the CanWalk study protocol, which aims to assess the feasibility and acceptability of undertaking a randomized controlled trial of a community-based walking program to enhance quality of life and well …
Purpose 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). Results 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. Conclusion 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.
Purpose of review As rising numbers of people are living with the long-term impact of cancer, digital health is playing an increasingly important role in the monitoring and support of survivors and their caregivers. This article reviews current evidence, practice and developments, and identifies emerging issues and opportunities. Recent findings Digital health innovations, primarily using internet or smartphone-enabled applications, have been successfully developed, particularly in the areas of symptom management, decision-making, survivorship and follow-up care and palliative care. The research is characterized by much developmental activity, and evidence is accruing for efficacy and effectiveness. Opportunities afforded by digital health include timelier and patient-centred evidence-based care, offering improved clinical outcomes and independence. Barriers to implementation include lack of patient and professional engagement, perceived burden, depersonalization and missed care. Summary There is much enthusiasm for the role of digital health in monitoring and providing support to cancer survivors, but further research is needed to establish clinical efficacy and understand the mechanisms for successful implementation in practice. The role of wearables, the internet of things and big data analytics is yet to be fully explored in supportive cancer care and may present new opportunities to enhance care and survivor experience.
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.
Background 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. Methods 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. Results 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. Conclusions 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 Patient-Reported Outcomes (PROs) are captured within cancer trials to help future patients and their clinicians make more informed treatment decisions. However, variability in standards of PRO trial design and reporting threaten the validity of these endpoints for application in clinical practice. Methods We systematically investigated a cohort of randomized controlled cancer trials which included a primary or secondary PRO. For each trial, an evaluation of protocol and reporting quality was undertaken using standard checklists. General patterns of reporting where also explored. Results Protocols (101 sourced, 44.3%) included a mean of 10/33 (range = 2–19, SD = 4) PRO protocol checklist items. Recommended items frequently omitted included: the rationale and objectives underpinning PRO collection and approaches to minimise/address missing PRO data. Of 160 trials with published results, 61 (38.1%, 95% CI = 30.6% to 45.7%) failed to include their PRO findings in any publication (mean 6.43-year follow-up); these trials included 49,568 participants. Although two-thirds of included trials published PRO findings, reporting standards were often inadequate according to international guidelines (mean inclusion of 3/14 (range = 0–11, SD = 3) CONSORT PRO Extension checklist items). Over half of trials publishing PRO results in a secondary publication (12/22, 54.5%) took 4 or more years to do so following trial closure, with 8 (36.4%) taking 5-8 years and one trial publishing after 14 years. Conclusions PRO protocol content is frequently inadequate, and non-reporting of PRO findings is widespread, meaning patient-important information may not be available to benefit patients, clinicians and regulators. Even where PRO data are published, there is often considerable delay and reporting quality is suboptimal. This study presents key recommendations to enhance the likelihood of successful delivery of PROs in the future.
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.
Purpose The benefits of physical activity for cancer survivors are increasingly recognised and smartphone applications are available to assist them to become more physically active. Cancer clinicians, however, lack confidence about which physical activity apps to recommend as evidence on their quality and content is limited. Therefore, we reviewed freely available commercial physical activity/fitness apps to systematically assess their behavioural change content and quality of their design. Methods Systematic searches of the app stores for Apple and Android operating systems were conducted and apps were screened to identify free apps appropriate for cancer survivors. Quality was assessed using the Mobile App Rating Scale (MARS) and behavioural content was evaluated using the Behavioural Change Techniques Taxonomy (BCTT). Results Of 341 apps identified, 67 were judged appropriate for cancer survivors and 46% combined aerobic and strength/stretching content. The overall number of behavioural change techniques (BCT) included was 3.96 (SD = 2.09), with the most frequent being ‘feedback on behaviour’ and ‘goal setting behaviour’. The mean scores for objective and subjective quality were 4.11 (SD = 0.59) and 3.07 (SD = 0.91) respectively (range 0 to 5). Finally, a modest positive correlation was found between the number of BCT and the quality of engagement, awareness and knowledge as assessed by the MARS. Conclusion Only a fifth of retrieved physical activity apps contained potentially suitable content for people affected by cancer. Overall, most apps we reviewed appeared to perform well in terms of their objective quality, but less well at promoting knowledge and awareness or help seeking related to physical activity. Implications for Cancer Survivors Many physical activity apps are available but the combined use of MARS and BCTT suggests that not all of them are suitable to the needs is a promising and feasible approach for assessing the applicability, usability and content of physical activity of apps employed by cancer survivors and this study is a first step toward developing a guide.
Purpose This study aimed to adapt the Registered Nurse Forecast (RN4CAST) nurse survey making it appropriate to assess the working environments of ambulatory chemotherapy nurses, specifically focusing on care left undone. Method A two-phase approach was used. Firstly, cognitive interviews were conducted to adapt role specific sections of the RN4CAST nurses survey. The interviews were analysed to assess comprehension, retrieval, judgement and response processes to create the RN4CAST-chemotherapy assessment tool (CAT) survey. Secondly, a single centre feasibility study was undertaken to assess acceptability of the RN4CAST-C AT survey in an ambulatory chemotherapy setting. Results of the feasibility study were analysed using descriptive statistics and compared with routinely collected patient experience data. Results The cognitive interviews (n = 6) resulted in important amendments to the RN4CAST- CAT. Response rate to the feasibility study was acceptable at 57% (n = 12) and item completion rate was good (on average only 1 response missing per item). On average nurses looked after nine patients per shift, administered seven chemotherapy treatments and worked an hour and 10 min over their contracted time. Main areas of care left undone were related to verbal communication with patients and assessing patient comorbidities and toxicities. Conclusions We were able to adapt the RN4CAST to make it suitable for use in the ambulatory chemotherapy setting. Our study offers preliminary evidence that the RN4CAST-CAT and methodology are feasible and acceptable within the ambulatory chemotherapy setting. Larger scale testing is now required and if validated the RN4CAST-CAT has the potential to provide useful insights into the impact of nursing workload on staff experience, patient care and outcomes on ambulatory chemotherapy settings.
Aim To explore the conceptualization of patients' dignity in the context of end-of-life care in Taiwan. Background Dignity therapy – a novel nurse-delivered psychotherapeutic intervention – has been demonstrated to have potential to alleviate terminal patients' psycho-existential distress in western countries. In Taiwan, over half of end-of-life patients experience psychological-spiritual suffering and dignity therapy might be helpful in improving this situation. Hence, a preliminary study to clarify Taiwanese conceptualizations of ‘dignity’ was conducted prior to planning a feasibility study to gauge the potential cultural fit of an intervention of this type. Design Qualitative exploration. Methods Nine people with terminal cancer and ten health professionals were recruited from palliative care services in 2008. In-depth interviews were audiotaped and transcribed verbatim. A hermeneutic approach was employed to analyse and interpret data. Findings Being a valuable person is the core meaning of patients' dignity and this comprised intrinsic characteristics and extrinsic factors. Intrinsic characteristics of dignity encompassed living a moral life, having peace of mind and a sense of existence involving the perception of resignation to God's will. Extrinsic factors that influenced patients' dignity included illness-related distress, care delivery and the perception of being loved. A dynamic relationship between these elements determined the state of patients' dignity. Conclusion The concept of dignity is culturally bound and understood differently in the Chinese and Western context; such differences should be considered when planning and delivering care. Modifications should be made to dignity therapy to ensure it is culturally congruent with Taiwanese patients' beliefs.
Cancer patients undergoing chemotherapy experience a range of treatment-related problems, and variations in prevalence exist between treatment centres. A scoping review was undertaken to map reported rates of problem prevalence in the literature. This will inform development of a patient-reported outcome measure (PROM) to monitor prevalence and severity of problems over time and assist service providers optimise supportive care provision. Two databases (Embase and Medline) were searched from 2002 to 2013. Fifty one published papers and conference abstracts reporting problem prevalence rates were identified. The papers reported 98 different problems, from which a typology of 27 problem domains was developed, including both physical symptoms and psychosocial issues. The problem domains most often studied were nausea, vomiting and fatigue. This review reflects the chemotherapy-associated problems to which researchers attach the most importance. The range in reported prevalence across studies was very broad (e.g. nausea: 9–74%), with even less frequently studied problems showing high prevalence in some studies (e.g. gynaecological problems: up to 94%). The wide variation in prevalence and range of problems experienced raises challenges for PROM development. Patients should therefore be involved in consensus exercises to assist selection of items to ensure any instrument is complete and robust.
Background: Outcome indicators are increasingly advocated to demonstrate the impact of high-quality care; however, generic measures do not encompass outcomes relevant to specialist areas. Objective: The aim of this study was to develop an outcome measure (Patient-Reported Chemotherapy Indicators of Symptoms and Experience [PR-CISE]) for use in ambulatory chemotherapy settings and assess its feasibility, acceptability, and preliminary efficacy in clinical practice. Methods: Three areas were covered by PR-CISE—symptom management, safe medication administration, and experience of supportive care. Outcome selection was guided by review of evidence and reference groups of users, clinicians, and experts. Over 12 weeks, PR-CISE was distributed to patients receiving ambulatory chemotherapy at 10 cancer centers. Data were analyzed descriptively and with case mix adjustment using regression-based models. Results: There were 2466 responses. There was variability across centers in terms of symptom experience and support provided. Across the whole sample, 25% reported moderate or severe nausea; however, rates varied between centers (25%–75%). Similar results emerged for other symptoms. When asked about support for symptom management, 80% reported that chemotherapy nurses asked about and were aware of symptom severity and provided useful information/advice. Once again, there was substantial variability between centers. Unexplained variation remained after case mix adjustment, suggesting that differences may be “real” rather than caused by population differences. Stakeholders planned to make changes to care delivery based on data on their performance. Conclusions: We successfully developed and tested indicators assessing the quality of care provided in ambulatory chemotherapy services. Implications: Results show that monitoring outcomes demonstrate potential differences in care quality and provide a stimulus to improve the experience and health of patients.