The impact of age on physical functioning after treatment for breast cancer, as measured by patient-reported outcome measures: A systematic review.

PURPOSE: This systematic review aims to explore the impact of age on physical functioning post-treatment for early-stage, locally advanced, or locally recurrent breast cancer, as measured by patient-reported outcome measures (PROMs), identify PROMs used and variations in physical functioning terms/labels. METHODS: MEDLINE, EmBase, PsycINFO, CINAHL and AMED were searched, along with relevant key journals and reference lists. Risk of bias (quality) assessment was conducted using a Critical Appraisal Skills Programme checklist. Data was synthesised through tables and narrative. RESULTS: 28,207 titles were extracted from electronic databases, resulting in 44 studies with age sub-groups, and 120 without age sub-groups. Of those with findings on the impact of age, there was variability in the way findings were reported and 21 % found that age did not have a significant impact. However, 66 % of the studies found that with older age, physical functioning declined post-treatment. Comorbidities were associated with physical functioning declines. However, findings from sub-groups (breast cancer stage, treatment type and time post-treatment) lacked concordance. Twenty-eight types of PROM were used: the EORTC QLQ-C30 was most common (50.6 %), followed by the SF-36 (32.3 %). There were 145 terms/labels for physical functioning: 'physical functioning/function' was used most often (82.3 %). CONCLUSIONS: Findings point towards an older age and comorbidities being associated with more physical functioning declines. However, it was not possible to determine if stage, treatment type and time since treatment had any influence. More consistent use of the terminology 'physical functioning/function' would aid future comparisons of study results.

Identifying social outcomes of importance for childhood cancer survivors: an e-Delphi study.

PURPOSE: Childhood cancer survivors (CCS) are at risk of deficits in their social outcomes, a key aspect of overall health and quality of life. Social outcomes of import are ill-defined leading to potential gaps in research and service provision. In this study, we undertook a preliminary consensus seeking exercise to support the development of a framework of the important social outcomes for CCS. METHODS: A modified e-Delphi study was conducted with four groups: CCS, health professionals, social workers and teachers. Round 1, developed from a literature review, included 34 questions rated for importance on a 7-point Likert scale. Rounds 2 and 3 presented items not achieving consensus, additionally proposed items and in round 3, a ranking question. RESULTS: Survey 1 was completed by 38 participants, 31 (82%) completed survey 2 and 28 (76%) completed survey 3. A total of 36 items were prioritised across 6 domains (education, independence, work, relationships, community, lifestyle), together forming the final list of social outcomes. Of these, 22 items met consensus for importance. Items rated most important were "having autonomy" and "avoiding social isolation". Quantitative and qualitative results reflected that social outcomes for survivors and general public should be the same. CONCLUSION: We have generated initial consensus on important social outcomes for CCS, highlighting the need for these to be matched to those of the general population. It suggests strategies are required to ensure autonomy and appropriate support for independence and relationships are provided through long-term aftercare and beyond. Further work is needed to validate and develop these findings into a framework to support appropriate social aftercare for CCS.

Following treatment for childhood cancer, survivors may face problems with their social health. These are the parts of life, besides physical and mental health, that help people to lead full, happy and satisfied lives. Social health is important as it affects all areas of our lives and includes many areas such as education, work and relationships. It is essential that we understand what the most important areas of social health are for childhood cancer survivors so that we can support these. This will help survivors lead the lives they want as adults. In this study, 38 childhood cancer survivors, children's cancer doctors and nurses, social workers and teachers took part in a series of questionnaires designed to collect their views about social health for survivors. Participants established 22 areas of social health to be very important. 'Having autonomy' and 'avoiding social isolation' were selected as the most important. Participants felt that the aspects of social health which are important to survivors are the same outcomes as for the wider public. However, survivors may face many barriers to doing well in these areas. To fully identify the important areas of social health for childhood cancer survivors, we need to undertake further work to understand the views of other important groups, such as parents or carers. We also need to explore the barriers survivors face in achieving good social health.

Patient experiences of an electronic PRO tailored feedback system for symptom management following upper gastrointestinal cancer surgery.

PURPOSE: Complications following upper gastrointestinal (UGI) surgery are common. Symptom-monitoring following discharge is not standardized. An electronic patient-reported outcome (ePRO) system providing feedback to patients and clinicians could support patients and improve outcomes. Little is known about patients' experiences of using such systems. This qualitative sub-study explored patients' perspectives of the benefits of using a novel ePRO system, developed as part of the mixed methods eRAPID pilot study, to support recovery following discharge after UGI surgery. METHODS: Patients completed the online ePRO symptom-report system post-discharge. Weekly interviews explored patients' experiences of using ePRO, the acceptability of feedback generated and its value for supporting their recovery. Interviews were audio-recorded and targeted transcriptions were thematically analysed. RESULTS: Thirty-five interviews with 16 participants (11 men, mean age 63 years) were analysed. Two main themes were identified: (1) reassurance and (2) empowerment. Feelings of isolation were common; many patients felt uninformed regarding their expectations of recovery and whether their symptoms warranted clinical investigation. Participants were reassured by tailored feedback advising them to contact their care team, alleviating their anxiety. Patients reported feeling empowered by the ePRO system and in control of their symptoms and recovery. CONCLUSION: Patients recovering at home following major cancer surgery regarded electronic symptom-monitoring and feedback as acceptable and beneficial. Patients perceived that the system enhanced information provision and provided a direct link to their care team. Patients felt that the system provided reassurance at a time of uncertainty and isolation, enabling them to feel in control of their symptoms and recovery.

A real-time electronic symptom monitoring system for patients after discharge following surgery: a pilot study in cancer-related surgery.

BACKGROUND: Advances in peri-operative care of surgical oncology patients result in shorter hospital stays. Earlier discharge may bring benefits, but complications can occur while patients are recovering at home. Electronic patient-reported outcome (ePRO) systems may enhance remote, real-time symptom monitoring and detection of complications after hospital discharge, thereby improving patient safety and outcomes. Evidence of the effectiveness of ePRO systems in surgical oncology is lacking. This pilot study evaluated the feasibility of a real-time electronic symptom monitoring system for patients after discharge following cancer-related upper gastrointestinal surgery. METHODS: A pilot study in two UK hospitals included patients who had undergone cancer-related upper gastrointestinal surgery. Participants completed the ePRO symptom-report at discharge, twice in the first week and weekly post-discharge. Symptom-report completeness, system actions, barriers to using the ePRO system and technical performance were examined. The ePRO surgery system is an online symptom-report that allows clinicians to view patient symptom-reports within hospital electronic health records and was developed as part of the eRAPID project. Clinically derived algorithms provide patients with tailored self-management advice, prompts to contact a clinician or automated clinician alerts depending on symptom severity. Interviews with participants and clinicians determined the acceptability of the ePRO system to support patients and their clinical management during recovery. RESULTS: Ninety-one patients were approached, of which 40 consented to participate (27 male, mean age 64 years). Symptom-report response rates were high (range 63-100%). Of 197 ePRO completions analysed, 76 (39%) triggered self-management advice, 72 (36%) trigged advice to contact a clinician, 9 (5%) triggered a clinician alert and 40 (20%) did not require advice. Participants found the ePRO system reassuring, providing timely information and advice relevant to supporting their recovery. Clinicians regarded the system as a useful adjunct to usual care, by signposting patients to seek appropriate help and enhancing their understanding of patients' experiences during recovery. CONCLUSION: Use of the ePRO system for the real-time, remote monitoring of symptoms in patients recovering from cancer-related upper gastrointestinal surgery is feasible and acceptable. A definitive randomised controlled trial is needed to evaluate the impact of the system on patients' wellbeing after hospital discharge.

Expectations of outcomes in patients with colorectal cancer.

BACKGROUND: Understanding patients' expectations of their treatment is critical to ensure appropriate treatment decisions, and to explore how expectations influence coping, quality of life and well-being. This study aimed to examine these issues related to treatment in patients with colorectal cancer. METHODS: A literature search from January 1946 to September 2016 was performed to identify available data regarding patients' expectations of outcomes following colorectal cancer treatment. A narrative synthesis of the evidence was planned. RESULTS: Of 4337 items initially identified, 20 articles were included in the review. In studies presenting data on overall and short-term survival, patients considerably overestimated prognosis. Patients also had unrealistic expectations of the negative aspects of chemotherapy and stomas. There was marked discordance between patients' and clinicians' expectations regarding chemotherapy, end-of-life care, bowel function and psychosocial outcomes. Level of education was the most consistent factor influencing the accuracy of patients' expectations. CONCLUSION: Patients with colorectal cancer frequently have unrealistic expectations of treatment. Marked disparities exist between patients' and clinicians' expectations of outcomes.

Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment.

BACKGROUND: Significant adverse events (AE) during cancer therapy disrupt treatment and escalate to emergency admissions. Approaches to improve the timeliness and accuracy of AE reporting may improve safety and reduce health service costs. Reporting AE via patient reported outcomes (PROs), can improve clinician-patient communication and making data available to clinicians in 'real-time' using electronic PROs (ePROs) could potentially transform clinical practice by providing easily accessible records to guide treatment decisions. This manuscript describes the development of eRAPID (electronic patient self-Reporting of Adverse-events: Patient Information and aDvice) is a National Institute for Health Research-funded programme, a system for patients to self-report and manage AE online during and after cancer treatment. MATERIALS AND METHODS: A multidisciplinary team of IT experts, staff and patients developed using agile principles a secure web application interface (QStore) between an existing online questionnaire builder (QTool) displaying real-time ePRO data to clinicians in the electronic patient record at Leeds Teaching Hospitals NHS Trust. Hierarchical algorithms were developed corresponding to Common Terminology Criteria for Adverse Events grading using the QTool question dependency function. Patient advocates (N = 9), patients (N = 13), and staff (N = 19) usability tested the system reporting combinations of AE. RESULTS: The eRAPID system allows patients to report AE from home on PC, tablet or any web enabled device securely during treatment. The system generates immediate self-management advice for low or moderate AE and for severe AE advice to contact the hospital immediately. Clinicians can view patient AE data in the electronic patient record and receive email notifications when patients report severe AE. CONCLUSIONS: Evaluation of the system in a randomised controlled trial in breast, gynaecological and colorectal cancer patients undergoing systemic therapy is currently underway. To adapt eRAPID for different treatment groups, pilot studies are being undertaken with patients receiving pelvic radiotherapy and upper gastrointestinal surgery. ISRCTN88520246.

Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes.

BACKGROUND: In the UK, demonstration of patient and public involvement (PPI) is now a funding requirement. Despite advice being available to researchers regarding PPI, levels of engagement are variable. Patient involvement has been at the core of the Leeds Psychosocial Oncology and Clinical Practice Research Group since 2007 when a local Research Advisory Group (RAG) was established. In addition, we work with experienced patient advocates from national groups. METHODS: The RAG is led by designated researchers who manage and communicate with members. The RAG is invited to twice yearly meetings with the full research team when study findings are disseminated and advice sought. The meetings are also an opportunity to socialise and thank members. Effective partnerships and engagement require good communication, building relationships over time and tailoring involvement to individuals' skills and experience. RESULTS: Patients have been involved in design, planning new projects and assisting with grant proposals; development, pilot testing of interview strategies and question generation, project steering groups and management teams, development of self-management advice for online patient portals; implementation, extensive beta testing of new questionnaire builder software to enable collection of online patient-reported outcomes (PRO) and study websites, cognitive interviews to develop PRO items; dissemination, co-authorship of papers and presentations, attendance/representation of the group at conferences. CONCLUSION: The involvement of patient advocates is integral to ensuring PRO development remains patient-centred. Having a co-operative, well-established local PPI group and nationally active patient collaborators has had a rewarding and significant impact on our research programmes.

Need for psychological follow-up among young adult survivors of childhood cancer.

Follow-up is recommended for survivors of childhood cancer. Decisions about care tend to be made in terms of physical health, but psychological late effects including post-traumatic stress disorder (PTSD) and symptoms (PTSS) are prevalent. We report prevalence of PTSD/PTSS in a UK cohort, self-care and implications for organisation of follow-up. Eligible survivors (n= 218) under regular follow-up were invited to complete measures of PTSD, late effects and self-efficacy. Information about late effects was also taken from medical notes. A total of 118 survivors responded (54.1%) and 108 (49.5%) completed questionnaires. Prevalence of clinical PTSD (13.9%) was comparable with US findings. Female subjects and those who reported more late effects reported more PTSD. In regression analyses, number of survivor-reported late effects (but not number-recorded in medical notes) and PTSS predicted self-efficacy. Significant numbers of survivors report PTSS but this is unrelated to diagnosis or treatment. Female subjects and those who reported more physical late effects also reported more PTSS. Decisions to discharge survivors from routine care must consider psychological well-being as well as physical late effects. We recommend routine psychological screening for all survivors of childhood cancer and suggest this can be acceptable to survivors and feasible in clinic.

Gender differences in self-reported late effects, quality of life and satisfaction with clinic in survivors of lymphoma.

OBJECTIVES: Gender differences in perceived vulnerability to late effects and views about follow-up among cancer survivors have received little attention. As lymphoma affects both genders similarly, we compared the consequences of cancer (late effects, perceived vulnerability and quality of life (health-related quality of life (HRQoL)), and satisfaction with clinic visits between genders. METHODS: A cohort of 115 younger adults (18-45 years, >5 years disease-free survival), who had been treated for lymphoma participated. Questionnaires (n = 91) were completed before and after (n = 62) routine consultant-led appointments. Survivors (n = 24) without appointments were recruited by post. Questionnaires included HRQoL, late effects, perceived vulnerability, issues survivors wanted to discuss and reported discussing in clinic, time waiting in clinic and consultation satisfaction. RESULTS: There were no gender differences in number of self-reported late effects or perceived vulnerability. Men with more late effects reported worse psychological HRQoL (r = 0.50, p<0.001). While men wanted to discuss more topics than they did, women were able to discuss the topics they wanted (ANOVA, p = 0.01). Multiple regression analyses showed a shorter wait in clinic (r = -0.46, p = 0.009) and discussing more topics (r = 0.34, p = 0.06) explained 30.6% of the variance in consultation satisfaction for men. CONCLUSIONS: Issues surrounding follow-up provision are increasingly important given the length of survival in young adults following treatment for lymphoma. Men may experience poor psychological well-being due to distress about unanswered concerns. Consideration of their concerns should be prioritised, given that satisfaction and ultimately continued attendance at clinic and HRQoL may be dependent on the extent to which follow-up meets survivors' expectations.

A simple practical patient-reported clinic satisfaction measure for young adults.

BACKGROUND: The development of practical patient-reported outcome measures (PROM) to assess the user view of health programmes is increasingly important. Valid, shorter instruments are more likely to be used and completed than extensive questionnaires. METHODS: Consecutive adult outpatient attendees who were long-term survivors of childhood cancer completed the 16-item Patient Satisfaction with Communication Questionnaire (PSCQ). These data were used to develop a three-item questionnaire. The brief PROM was validated against data from a second, independent survey conducted in a similar fashion. RESULTS: In all, 93 individuals contributed PSCQ data, a response rate of 63%. The brief PROM was highly correlated with the original PSCQ in derivation (ρ=0.87, P<0.001) and validation (ρ=0.82, P<0.001) data sets. Using a cutoff of scores <9 to indicate dissatisfaction showed fair discrimination in derivation (sensitivity 85%, specificity 80%) and validation data sets (sensitivity 75%, specificity 78%). CONCLUSION: It is possible to quickly and efficiently assess satisfaction with follow-up clinics with three questions. This brief PROM could prove useful in monitoring services quality by allowing clinic users to provide timely feedback on their care.

Benefit finding in survivors of childhood cancer and their parents: further empirical support for the Benefit Finding Scale for Children.

BACKGROUND: Diagnosis of a life-threatening condition has been linked to post-traumatic stress. However, only recently has it been acknowledged that positive outcomes including post-traumatic growth or benefit finding may also occur. The aim of our study was to extend previous work describing benefit finding among survivors of childhood cancer, by determining the contribution of demographic and medical variables and associations between child benefit finding and parent post-traumatic growth. METHODS: Survivors of any child cancer (leukaemia, central nervous system or solid tumour; age 12-15 years; completed treatment >2 years) were recruited from routine follow-up clinics and asked to complete questionnaires [Benefit Finding Scale for Children (BFSC), quality of life (QOL), post-traumatic stress (PTS), illness perception and optimism]. Parents completed parallel measures to describe their own post-traumatic growth (PTG), QOL, PTS and illness perception. RESULTS: Forty-eight survivors and parents completed questionnaires (response rate: 81%). The BFSC showed good internal reliability (alpha = 0.91). Diagnosis of leukaemia, greater optimism and reports that the illness still affects their life today were associated with higher scores on the BFSC among survivors themselves. For parents, perceptions of how much the illness still affects them emotionally was associated with PTG. There was no association between children's benefit finding and parents' PTG. CONCLUSIONS: The BFSC is a useful and reliable instrument to assess positive outcomes after cancer in children. The extent to which survivors are optimistic and perceive on-going effects of the illness on their daily lives is significantly associated with the ability to find benefit after end of treatment.

Follow-up care for cancer survivors: views of the younger adult.

BACKGROUND: Since the launch of the National Cancer Survivorship Initiative, there has been a surge of interest surrounding the value and organisation of long-term follow-up care after cancer treatment. We report the views of 309 adult cancer survivors (aged 18-45 years) on provision of follow-up and preferences for care. METHODS: A total of 207 survivors completed questionnaires before and after routine consultant-led follow-up appointments and 102 were recruited by post. Measures of health status (including late effects, perceived vulnerability to late effects and quality of life), reasons for attending follow-up (clinical and supportive), issues to be discussed at follow-up and preferences for different models of care were assessed. RESULTS: In all, 59% of the survivors reported experiencing one or more cancer-related health problems. Survivors rated clinical reasons for attending follow-up more highly than supportive reasons (P<0.001), although nutritional advice and counselling were considered useful (60 and 47%, respectively). Those still receiving scheduled follow-up appointments did not discuss the range of issues intended with 'late effects' and 'fertility', which were particularly under-discussed. Hospital rather than GP follow-up was more highly rated. CONCLUSION: Survivors value the clinical reassurance currently provided by consultant-led care. However, supportive needs are not systematically addressed. Multi-disciplinary services are recommended to meet supportive needs in addition to clinical care.

Follow-up care for cancer survivors: the views of clinicians.

BACKGROUND: Evidence for the efficacy of late effects surveillance in adult cancer survivors is lacking and there is little agreement among clinicians on appropriate follow-up care. METHODS: We report the views of both cancer experts and general practitioners (GPs) on long-term follow-up provision for cancer survivors, focussing on the 18-45 years age group. A total of 421 cancer experts (36% haematologists, 33% oncologists, 18% surgeons, 10% nurses, 2% other) and 54 GPs responded to a structured online survey. Reasons for follow-up care (clinical or supportive); advantages and disadvantages of follow-up in primary care; current practice; and resources required for a quality follow-up service were assessed. RESULTS: Clinicians valued clinical reasons for follow-up more highly than supportive reasons (P<0.001). Learning more about late effects and checking for cancer recurrence were rated as the most important reasons for follow-up by cancer experts and GPs. A total of 85% of cancer specialists hold follow-up consultations alongside patients on active treatment. Cancer experts agreed that primary care follow-up would increase their availability for acute oncological care, but reduce information on late effects. The most important resource to provide a quality follow-up service was specialist nursing support (91%). CONCLUSIONS: Follow-up guidelines that include late effects surveillance are needed. Where and who should deliver this care requires further debate.

Follow-up care after childhood cancer: survivors' expectations and preferences for care.

AIMS: To describe (1) self-rated quality of life, late effects and perceived future vulnerability, (2) expectations before a follow-up appointment, subsequent satisfaction and preferences for different models of care and (3) differences between survivors in quality of life, perceived late effects, vulnerability, expectations regarding follow-up, information needs (topics they want to and did discuss) and preferences for different models of care depending on risk stratification among childhood cancer survivors. METHOD: One hundred and twelve of 141 survivors (18-45 years), diagnosed before 16 years and >5 years since diagnosis completed questionnaires before and after a follow-up appointment (or an abridged questionnaire if they did not attend an appointment within the study period). We collected data on physical (physical component score [PCS]) and mental (mental component score [MCS]) quality of life, late effects, future vulnerability and expectations about care (clinical: identification of late effects; supportive: employment, relationships). Medical information was extracted from case notes. RESULTS: MCS and PCS were comparable to population norms, but 55.5% of survivors reported > or =1 late effect (range 1-9). Clinical care was rated more highly than supportive care (p<0.001) especially in those with worse PCS (p=0.042). Supportive care was rated highly by survivors who reported more late effects (p=0.040), higher future vulnerability (p<0.001) and lower MCS (p=0.005), and by women (p=0.014). Regardless of risk stratification, consultant-led follow-up was valued higher than other models (nurse-led care, GP-led care or postal/telephone follow-up, p<0.001). CONCLUSION: Childhood cancer survivors are in favour of sustaining long-term follow-up care within the existing consultant-led model but this is not feasible given the increasing number of survivors. In the future we therefore need to develop alternative services which will provide the best medical care for each survivor's needs.