The Emotional Impact of a Cancer Diagnosis: A Qualitative Study of Adolescent and Young Adult Experience.

The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people's experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3-5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing.

'We do need to keep some human touch'-Patient and clinician experiences of ovarian cancer follow-up and the potential for an electronic patient-reported outcome pathway: A qualitative interview study.

OBJECTIVE: This study aimed to explore experiences of follow-up after treatment and views on an electronic patient-reported outcome (ePRO) pathway among ovarian cancer patients and clinicians. METHODS: Semi-structured qualitative interviews were conducted with clinicians and patients previously treated for ovarian cancer. Interviews explored experiences of the current follow-up pathway, patients' needs and views on an ePRO pathway enabling patients to report symptoms online rather than attend clinic-based appointments. Transcripts were analysed using framework analysis. RESULTS: Sixteen patients and 10 clinicians participated from four hospitals in England. Four key themes were identified: transition into follow-up, key features of effective follow-up, issues in follow-up and views of ePRO. Both patients and clinicians saw benefits of an ePRO pathway alongside continued access to specialist support and discussed various practicalities (e.g., frequency, introduction and communication). Technology concerns and feelings of abandonment were highlighted as barriers. The proposed impact on clinical and individual patient outcomes was discussed. CONCLUSION: Patient and clinician views on follow-up and an ePRO pathway informed key recommendations on the development/introduction of ePRO follow-up. Technology use in healthcare will continue to grow and may offer solutions to facilitate responsive and tailored care. Further research should explore the safety, experiences and acceptability of ePRO follow-up.

Online monitoring of patient self-reported adverse events in early phase clinical trials: Views from patients, clinicians, and trial staff.

BACKGROUND/AIMS: New classes of cancer drugs bring a range of unknown and undesirable adverse events. Adverse event monitoring is essential in phase I trials to assess toxicity and safety. In phase II, the focus is also on efficacy but robust data on adverse events continue to inform the safety and the adverse event profile. Standard, clinician-led monitoring has been shown to underestimate patients' symptoms. Hence, patient-reported adverse event monitoring has been argued to complement and improve the information on adverse events in early phase clinical trials. With advances in information technology, real-time patient self-reported adverse events in trials are feasible. This study explored the experiences and procedures for reporting adverse events in early phase trials among patients, clinical staff, and trial staff, and their views on using an electronic patient-reported outcome adverse event system in this setting. METHODS: Qualitative interviews were conducted with patients, purposively sampled across ages, gender, and different phases of trials, and with clinical and trial-related staff involved in early phase trials (e.g. consultants, research nurses, hospital-based trial assistants/data managers, trial unit management staff). Interviews explored patient experiences and views on current adverse event reporting processes and electronic patient-reported outcome adverse event reporting. Framework analysis techniques were used to analyse the data. RESULTS: Interviewees were from two hospital trusts with early phase portfolios in England and a trial unit, and included sixteen patients, five consultants, four research nurses, five hospital-based trial staff, and two trial unit staff. Interviews identified three key themes (patient experiences, data flow, and views on electronic patient-reported outcome adverse event reporting). Stakeholders emphasised the intensity of trials for patients and the importance of extensive information provision within the uncertainty of early phase trial drugs. Regular face-to-face appointments for patients supplemented by telephone contact aimed to capture any adverse events. Delayed or under-reporting of mild- or low-severity symptoms was evident among patients. Hospital-based staff highlighted the challenges of current data collection including intense timescales, monitoring by trial sponsors, and high workload. Positive views on electronic patient-reported outcome adverse events highlighted that this could provide a more comprehensive and accurate view on the side effects of new drugs. Clinical staff emphasised patient safety and the need for clear responsibilities for monitoring. The need for careful decision-making about data flow and symptom attribution was highlighted; with trial unit staff emphasising the need for clinician review. CONCLUSION: Technology advances mean it is timely to explore the benefits and challenges of electronic patient-reported outcome adverse event reporting. This is a complex area warranting further consideration within the trial community. We have developed an online patient self-reporting tool and a small pilot with early phase trial patients is underway.

Delphi survey to inform patient-reported symptom monitoring after ovarian cancer treatment.

BACKGROUND: Increasing numbers of ovarian cancer patients are living longer and requiring regular follow-up to detect disease recurrence. New models of follow-up care are needed to meet the growing number and needs of this patient group. The potential for patient-reported outcome measures (PROMs) to capture key symptoms and online technology to facilitate long-term follow-up has been suggested. OBJECTIVES: Prior to a pilot study exploring the potential for electronic patient-reported symptom monitoring, the content of an online intervention was developed via Delphi methodology. DESIGN AND SETTING: A Delphi process was conducted aiming to obtain consensus amongst the clinicians and patients from 4 hospitals on the key aspects to monitor during follow-up after ovarian cancer treatment, and how to monitor them in an online intervention. A two round Delphi was conducted. Consensus was defined as at least 70% agreement. RESULTS: Out of 43 participants, 30 (18 patients, 12 healthcare professionals) completed round 1 and 19 (11 patients, 8 healthcare professionals) completed round 2. Consensus was reached on the key symptoms to monitor, and the importance of monitoring both duration and frequency of symptoms. Opportunity for review of psychological wellbeing and holistic needs were considered important by both groups. The frequency of online questionnaire completion, timeframe for patients to reflect on (e.g. during the past X weeks), and the choice of PROMs items to monitor symptoms did not reach the consensus threshold. CONCLUSION: It is crucial that any intervention and the selection of PROMs is fully described to ensure transparency about the development and decisions taken. In this work, a set of key symptoms and areas to monitor were agreed, which has informed the design of an online intervention and a subsequent pilot study is now underway. The proposed model of remote follow-up using electronic PROMs could be adapted and explored in other cancer sites.

Evaluation of the "Shared Community Follow-up" after a germ cell tumour-A novel initiative for remote cancer follow-up enhanced by online patient-reported outcome measures.

OBJECTIVE: Replying to germ cell tumour patients' needs, we implemented "Shared Community Follow-up"-a collaborative initiative, enabling remote delivery of specialist cancer care across large geographical areas. Blood, radiological investigations and patient-reported outcome measures (PROMs) are completed remotely and integrated within the electronic patient records for specialist review without patients requiring appointments. We describe the service evaluation estimating the feasibility, safety and acceptability of this initiative versus traditional Standard Follow-up. METHODS: This cross-sectional evaluation estimated feasibility (uptake, adherence) and safety (via missed appointments, timeliness, cancellations) using routinely collected service process data. An acceptability questionnaire, evaluating patient satisfaction, was administered to 91 patients. RESULTS: The new service is feasible. Across 2 years (2014-2016), uptake increased 54% (N = 123 to N = 270) and only 4.8% (N = 13) of patients were non-adherent. Fewer missed/cancelled investigations (N = 39, 5.9% vs. N = 566, 85.5%), timelier investigations (seven vs. 14 timely investigations) and equal relapse detection suggest its safety. PROMs replaced 3 appointments/patient. Patients were as satisfied with both services (3.4/4 vs. 3.6/4). CONCLUSION: New follow-up services, with investigations completed remotely and shared between community providers and cancer centres, offer an alternative to traditional appointments with advantages for patients and the National Health Service.

Prevalence of common mental health disorders in adults who are high or costly users of healthcare services: protocol for a systematic review and meta-analysis.

INTRODUCTION: In all healthcare settings, a small proportion of patients account for a large level of healthcare use and associated high healthcare costs. Depression and anxiety are common co-morbidities in patients who are high users of care. The aims of this systematic review are to: (1) estimate the prevalence of anxiety/depression in adults who are high users of general physical healthcare services and/or who accrue high healthcare costs (2) estimate the magnitude of healthcare use associated with the presence of anxiety/depression. METHODS AND ANALYSIS: This review will include any studies where patients are high users of primary, secondary or emergency healthcare services and/or accrue high healthcare costs. This is the first systematic review to focus on patients who are over the age of 18, whose degree of anxiety/depression has been evaluated with a standardised questionnaire or by a clinical interview generating a diagnosis according to international diagnostic criteria. The review will include eligible studies indexed in Medline, PsychINFO, Embase, Cumulative Index to Nursing and Allied Health Literature, Prospective Register of Systematic Reviews, Cochrane Library from inception to 1 April 2019. We will estimate the prevalence of anxiety/depression in these populations and the magnitude of use associated with anxiety/depression across various general physical healthcare settings. We will provide a narrative description of findings and factors that may influence them. A meta-analysis may be pursued if the degree of heterogeneity across studies is acceptable. ETHICS AND DISSEMINATION: This systematic review will use data from existing studies, hence no ethical approvals are required. Findings will be disseminated in a peer-reviewed publication and at relevant academic meetings. PROSPERO REGISTRATION NUMBER: PROSPERO CRD42018102628.

Prevalence of medically unexplained symptoms in adults who are high users of health care services: a systematic review and meta-analysis protocol.

INTRODUCTION: Medically unexplained symptoms (MUS) are common in primary-care and secondary-care settings. Persistent symptoms of MUS are associated with a variety of poor outcomes including increased disability, poor quality of life and high healthcare costs. The aim of this systematic review is to review the relevant literature to determine the prevalence of MUS in patients who are high users of healthcare and/or who accrue high healthcare costs. METHODS AND ANALYSIS: This review will include studies with cases that are either high users of general healthcare or are patients who accrue high healthcare costs, aged ≥18 years and where a recognised measure of MUS, either a standardised clinical interview or questionnaire, was employed. The following citation databases MEDLINE, PsycINFO, EMBASE, CINAHL, PROSPERO and the Cochrane library will be systematically searched from inception to 30 June 2018. The Cochrane library was included because of the significant proportion of non-observational studies currently published in the database. The prevalence of MUS and associated disorders along with the costs or use of healthcare associated with the presence of MUS will be estimated with 95% CI. If possible, study results will be pooled into a meta-analysis. However, if heterogeneity is high, data analysis will be presented descriptively. ETHICS AND DISSEMINATION: Ethical approval is not required for this systematic review since only data from existing studies will be used. Results of this review will be disseminated in peer-reviewed publications and at national and international conferences. PROSPERO REGISTRATION NUMBER: CRD42018100388.

Discussing factors associated with quality of life in cancer follow-up appointments: a preliminary test of a pragmatic model for clinical practice.

OBJECTIVE:: The aim of this study is to perform a preliminary test of a practical, evidence-based model to enable discussions around quality of life-related concerns during cancer follow-up appointments. DESIGN:: Cross-sectional study measuring quality of life, illness perceptions, emotional distress, fatigue, and subjective cognitive complaints. SETTING:: Cancer outpatient follow-up clinics in four National Health Services in the United Kingdom. PARTICIPANTS:: Working-age post-treatment cancer patients, treated with curative intent. INTERVENTIONS:: Not applicable. MAIN MEASURES:: European Organisation for the Research and Treatment of Cancer - Quality of Life Questionnaire - Core 30, Illness Perceptions Questionnaire - Revised, Hospital Anxiety and Depression Scale, Chalder Fatigue Scale, and Cognitive Failures Questionnaire. RESULTS:: Fifty-seven cancer patients, with a mean age of 36 years and on average 2.75 years post treatment, returned the completed questionnaires. Anxiety partially mediated the association between subjective cognitive complaints and illness identity (60%) and timeline (25%). Cognitive complaints mediated the relationships between quality of life and anxiety (45%), depression (30%), and fatigue (62%). Depression mediated the relationships between quality of life and illness identity (48%) and timeline (40%). CONCLUSION:: Our study provides a preliminary test of an evidence-based model to help elicit quality of life-related concerns during cancer follow-up appointments. Illness perceptions are associated with quality of life through the mediation of other cancer-relevant factors. Discussing the type, origin, and expected duration of symptoms may elicit other concerns, such as emotional distress, fatigue, or cognitive complaints, which explained a significant amount of the relationship between illness perceptions and quality of life.

Acute memory deficits in chemotherapy-treated adults.

Data from research on amnesia and epilepsy are equivocal with regards to the dissociation, shown in animal models, between rapid and slow long-term memory consolidation. Cancer treatments have lasting disruptive effects on memory and on brain structures associated with memory, but their acute effects on synaptic consolidation are unknown. We investigated the hypothesis that cancer treatment selectively impairs slow synaptic consolidation. Cancer patients and their matched controls were administered a novel list-learning task modelled on the Rey Auditory Verbal Learning Test. Learning, forgetting, and retrieval were tested before, and one day after patients' first chemotherapy treatment. Due to difficulties recruiting cancer patients at that sensitive time, we were only able to study 10 patients and their matched controls. Patients exhibited treatment-dependent accelerated forgetting over 24 hours compared to their own pre-treatment performance and to the performance of control participants, in agreement with our hypothesis. The number of intrusions increased after treatment, suggesting retrieval deficits. Future research with larger samples should adapt our methods to distinguish between consolidation and retrieval causes for treatment-dependent accelerated forgetting. The presence of significant accelerated forgetting in our small sample is indicative of a potentially large acute effect of chemotherapy treatment on forgetting, with potentially clinically relevant implications.

A meta-analysis of cognitive impairment following adult cancer chemotherapy.

OBJECTIVE: Chemotherapy-induced cognitive impairments are reported by many cancer survivors. Research to date has not provided a clear description of their nature, extent, mechanisms, and duration. To investigate the impairments and factors that could influence their identification and severity, the present meta-analysis brings together research on this topic in adult cancer patients. METHOD: Our random-model meta-analysis includes 44 studies investigating the cognitive performance of adults treated with chemotherapy for non-central nervous system malignancies, primarily breast and testicular cancer. We conducted several subgroup analyses to identify the level of cognitive impairments in longitudinal and cross-sectional studies. We also pursued several multilevel model regressions to investigate the impact of methodological (study quality) and clinical moderators (diagnosis, age, time since treatment) on the observed effect sizes. RESULTS: Cognitive impairments were found in cross-sectional studies in immediate free recall, delayed memory, verbal memory, delayed recognition memory, selective attention, and attention capacity. Surprisingly, prior to chemotherapy, patients performed better than matched controls. In longitudinal studies, patients' performance increased from baseline to follow-up, an effect that was stronger in patients than controls. None of the chosen moderators influenced the magnitude of estimated summary effect sizes. CONCLUSIONS: The likelihood to identify impairments rests on the type of design employed, as memory and attention impairments are only detected in cross-sectional studies. We discuss the lack of significant impact of moderators on the effect sizes despite the heterogeneity of results, while providing recommendations toward decreasing the heterogeneity in future studies.