Barriers and facilitators to integrated cancer care between primary and secondary care: a scoping review.

PURPOSE: This scoping review identifies and characterises reported barriers and facilitators to providing integrated cancer care reported in the international literature, and develops recommendations for clinical practice. METHODS: This scoping review included literature published between 2009 and 2022 and describes the delivery of integrated cancer care between primary and secondary care sectors. Searches were conducted of an online database Ovid Medline and grey literature. RESULTS: The review included thirty-two papers. Barriers and facilitators to integrated cancer care were identified in three core areas: (1) at an individual user level around patient-healthcare professional interactions, (2) at an organisational level, and (3) at a healthcare system level. The review findings identified a need for further training for primary care professionals on cancer care, clarity in the delineation of primary care and oncologist roles (i.e. who does what), effective communication and engagement between primary and secondary care, and the provision of protocols and guidelines for follow-up care in cancer. CONCLUSIONS: Information sharing and communication between primary and secondary care must improve to meet the increasing demand for support for people living with and beyond cancer. Delivering integrated pathways between primary and secondary care will yield improvements in patient outcomes and health economic costs.

Evaluation of the nurse-assisted eHealth intervention 'eHealth@Hospital-2-Home' on self-care by patients with heart failure and colorectal cancer post-hospital discharge: protocol for a randomised controlled trial.

BACKGROUND: Patients with heart failure (HF) and colorectal cancer (CRC) are prone to comorbidity, a high rate of readmission, and complex healthcare needs. Self-care for people with HF and CRC after hospitalisation can be challenging, and patients may leave the hospital unprepared to self-manage their disease at home. eHealth solutions may be a beneficial tool to engage patients in self-care. METHODS: A randomised controlled trial with an embedded evaluation of intervention engagement and cost-effectiveness will be conducted to investigate the effect of eHealth intervention after hospital discharge on the self-efficacy of self-care. Eligible patients with HF or CRC will be recruited before discharge from two Norwegian university hospitals. The intervention group will use a nurse-assisted intervention-eHealth@Hospital-2-Home-for six weeks. The intervention includes remote monitoring of vital signs; patients' self-reports of symptoms, health and well-being; secure messaging between patients and hospital-based nurse navigators; and access to specific HF and CRC health-related information. The control group will receive routine care. Data collection will take place before the intervention (baseline), at the end of the intervention (Post-1), and at six months (Post-2). The primary outcome will be self-efficacy in self-care. The secondary outcomes will include measures of burden of treatment, health-related quality of life and 30- and 90-day readmissions. Sub-study analyses are planned in the HF patient population with primary outcomes of self-care behaviour and secondary outcomes of medication adherence, and readmission at 30 days, 90 days and 6 months. Patients' and nurse navigators' engagement and experiences with the eHealth intervention and cost-effectiveness will be investigated. Data will be analysed according to intention-to-treat principles. Qualitative data will be analysed using thematic analysis. DISCUSSION: This protocol will examine the effects of the eHealth@ Hospital-2-Home intervention on self-care in two prevalent patient groups, HF and CRC. It will allow the exploration of a generic framework for an eHealth intervention after hospital discharge, which could be adapted to other patient groups, upscaled, and implemented into clinical practice. TRIAL REGISTRATION: Clinical trials.gov (ID 301472).

eHealth interventions to support colorectal cancer patients' self-management after discharge from surgery-an integrative literature review.

INTRODUCTION: Colorectal cancer (CRC) creates elevated self-management demands and unmet support needs post-discharge. Follow-up care through eHealth post-primary surgery may be an effective means of supporting patients' needs. This integrative review describes the evidence regarding eHealth interventions post-hospital discharge focusing on delivery mode, user-interface and content, patient intervention adherence, impact on patient-reported outcomes and experiences of eHealth. METHODS: A university librarian performed literature searches in 2021 using four databases. After screening 1149 records, the authors read 30 full-text papers and included and extracted data from 26 papers. Two authors analysed the extracted data using the 'framework synthesis approach'. RESULTS: The 26 papers were published between 2012 and 2022. The eHealth interventions were mainly delivered by telephone with the assistance of healthcare professionals, combined with text messages or video conferencing. The user interfaces included websites, applications and physical activity (PA) trackers. The interventions comprised the monitoring of symptoms or health behaviours, patient information, education and counselling. Evidence showed a better psychological state and improved PA. Patients reported high satisfaction with eHealth. However, patient adherence was inadequately reported. CONCLUSIONS: eHealth interventions may positively impact CRC patients' anxiety and PA regardless of the user interface. Patients prefer technology combined with a human element.

Understanding the cultural environment of the outpatient care setting for patients with dementia receiving cancer treatment: A qualitative study.

INTRODUCTION: People with dementia have poorer cancer outcomes than those without dementia, and experience inequalities in access to, and quality of, care. Outpatient environments, where radiotherapy, chemotherapy and immunotherapy cancer treatments typically take place, have largely been excluded from research. This study was conducted to understand provision of treatment and support and experiences of care for people with dementia undergoing cancer treatment in the outpatient setting. MATERIALS AND METHODS: Using observation, interviews and document analysis, data were collected to scrutinize the cultural environment of ambulatory care, comprising the physical fabric of the care setting; interactions, behaviours and perceptions of those in the care setting; and the organizational, clinical and interactional processes involved in care delivery. The study was conducted in the outpatient oncology departments of two large teaching hospitals in England between January 2019 and July 2021. RESULTS: Data were gathered from a wide range of sources, including 15 h of observation, and interviews with patients (n = 2), caregivers (n = 7) and staff (n = 20). Evidence from this study suggests that the cultural environment of the outpatient care setting reflects and supports the standardized processing of people for cancer treatment. Dementia introduces a wider set of care requirements not catered for by this standardized treatment model and associated processes. Data showed that the needs of patients with dementia could be addressed most effectively when individualized care, as opposed to standardized care, was offered. CONCLUSION: There is work to be done in outpatient cancer services to ensure responsiveness to individual patient need. This could be achieved by having an established way (or ways) of eliciting needs, preferences and expectations, a belief that a person's needs and expectations are legitimate and that effort should be made to address them, with the ability to accommodate these needs and expectations. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers were involved in the study design and development of study materials including the interview topic guide. They also assisted with discussion and clarification of study findings.

'A real fine balancing act': A secondary qualitative analysis of power imbalance in comorbid cancer and dementia in an outpatient treatment setting.

AIMS: Studies of health services reveal a focus on provision of scheduled care at the expense of patient need, placing the health service in a position of power and the patient as passive recipient. This secondary qualitative analysis of a focused ethnography draws on the Foucauldian concept of power as pervasive and relational, to examine how an imbalance of power is manifested in situations where people with both cancer and dementia are being treated for cancer. DESIGN: Secondary qualitative analysis of a focused ethnographic study. DATA SOURCES: In the original study, qualitative data were gathered from observation and interviews with people with cancer and dementia (n = 2), caregivers (n = 7) and staff (n = 20). The study was conducted in the outpatient departments of two teaching hospitals in England between January 2019 and July 2021. Data from all sources were analysed for this secondary analysis using constant comparison. RESULTS: The principal theme was balance, encapsulating the competing priorities involved in delivering cancer treatment. There was tension between maintaining safety and ensuring an individual's right to treatment, and difficulty reconciling the needs of the system with the needs of individuals. CONCLUSION: The pervasive nature of power can be harnessed to enhance the agency of people with cancer and dementia by incorporating principles of shared decision making. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: We recommend incorporating the principles of personalized care to achieve more equitable power relations, reduce health inequalities and ensure that cancer treatment offered to people with dementia is safe and appropriate. REPORTING METHOD: EQUATOR (COREQ) guidelines have been used for reporting. PATIENT OR PUBLIC CONTRIBUTION: Patients and the public were involved in designing the original research questions and the study protocol including documentation such as interview topic guides and participant information sheets.

Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self-care work.

AIMS AND OBJECTIVES: Following a cross-sectional survey, a sub-sample of participants was interviewed to explore the interaction between symptoms and burden of treatment. BACKGROUND: Burden of treatment considers both the work associated with illness and treatment, including self-care work, as well as the individuals' capabilities and resources to engage in that work. The recent survey revealed the existence of a complex interaction. DESIGN: Qualitative abductive analysis of semi-structured interviews. METHODS: Adults with heart failure who participated in the survey were purposely sampled and invited to participate in semi-structured interviews. Location and mode of interview varied by participant choice. Excerpts from the verbatim transcripts were assessed for interactions between symptoms and burden of treatment, and when identified these were characterised and explained. We followed COREQ checklist for reporting. The patient research ambassador group was involved from research design to dissemination. RESULTS: Participants (n = 32) consistently discussed how symptoms altered their capability to engage in self-care work. As symptom intensity increased the difficultly of their self-care work increased. A number of intervening factors appeared to influence the relationship between symptoms and burden of treatment. Intervening factors included illness pathology, illness identity, the value of the tasks attempted and available support structures. These factors may change how symptoms and burden of treatment are perceived; a model was constructed to explain and summarise these interactions. CONCLUSIONS: The interaction between symptoms and burden of treatment is complex. Intervening factors-illness identity and pathology, task value and performance, and available support structures-appear to exert a strong influence on the interaction between symptoms and burden of treatment. RELEVANCE TO CLINICAL PRACTICE: These intervening factors present clinicians and researchers with opportunities to develop interventions that might reduce burden of treatment and improve symptoms and quality of life. CLINICAL TRIAL REGISTRATION: SYMPACT was registered with ISRCTN registry: ISRCTN11011943.

Self-management by older people living with cancer and multi-morbidity: a qualitative study.

PURPOSE: Over half of individuals diagnosed with cancer are aged over 70 years, and more than 75% of those with cancer report at least one other medical condition. Having multiple conditions alongside cancer in old age may lower functional status, greater likelihood of treatment complications and less favourable prognoses. This qualitative study explored how older people with long-term chronic conditions manage their health and meet their health-related goals after they have completed treatment for cancer. METHODS: One-to-one face-to-face qualitative interviews were conducted with 8 older people and 2 informal caregivers based in the UK. Older adults were eligible to participate if they were over 70 and had completed primary cancer treatment with curative intent and had at least one other chronic health condition. A semi-structured interview schedule developed a priori based on Shippee's cumulative complexity model was used. We aimed to explore experiences that could influence self-management, utilisation of healthcare services and health outcomes. A framework analysis was used to describe and interpret the data. RESULTS: Four overarching themes were identified in the analysis. These themes related to factors that influenced the everyday health-related workload and capacity of the participants. These factors included their health, resources, and opportunities, as well their motivation and sense of perceived control over their lives. CONCLUSIONS: Fragmented healthcare systems and relationships with healthcare professionals also influenced the participants' self-management of their health. Our findings highlight the interaction between an individuals' needs, capacity, treatment burden, and the services and resources available to them. These findings support calls to promote person-centred care to better support older adults to manage their health.

'It feels it's wasting whatever time I've got left': A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic.

BACKGROUND: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. AIM: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. DESIGN: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. SETTING/ PARTICIPANTS: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. RESULTS: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients' and carers' emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. CONCLUSION: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.

Influence of social networks on cancer survivors' self-management support: A mixed methods study.

OBJECTIVE: The role of social networks, especially weaker ties (e.g. casual acquaintances and hobby groups), in self-management of long-term consequences of cancer is unexplored. This study aimed to explore the structure of cancer survivors' social networks and their contribution to self-management support and health-related quality of life (HRQoL). METHODS: The study used a sequential, exploratory mixed methods design. Phase 1 surveyed 349 lymphoma, colorectal, breast and prostate cancer survivors. Phase 2 analysed 20 semi-structured interviews with respondents recruited from Phase 1. RESULTS: Phase 1 results suggested participants' HRQoL increased if they participated in an exercise group, if their self-management skills increased, and social distress and negative illness perception decreased (p < 0.0005 adj. R2 = 0.631). These findings were explored in Phase 2, identifying underlying mechanisms. Four themes were identified: disrupted networks after cancer treatment; navigating formal support and building individual capacity; peer networks and self-management knowledge and linking networks to enable adaptation in recovery. CONCLUSIONS: This study suggests engagement with community groups, particularly those not directly related to illness management and social interaction with weak ties, make a valuable contribution to self-management support, increase HRQoL and enhance well-being.

Enablers and barriers to progressing a clinical academic career in nursing, midwifery and allied health professions: A cross-sectional survey.

AIMS AND OBJECTIVES: This study aimed to understand the routes by which nurses, midwives and allied health professionals (NMAHPs) pursue and sustain a research career and the enablers and barriers to career progression. BACKGROUND: Robust evidence is central to practice and professional decision making of NMAHPs, with generation and translation of research arguably best led by those clinically active. Whilst countries like the UK and USA have fellowship schemes to support research career development, anecdotal reports suggest barriers exist in translating these opportunities into sustainable clinical academic careers. DESIGN: Online survey. METHODS: An online questionnaire addressing career choices, facilitators/barriers and support was emailed to 1074 past applicants (doctoral and post-doctoral) to National Institute of Health Research fellowship schemes (awarded and rejected) in England between March and May 2017; 231 responded (25.6%). Study reporting adheres to STROBE checklist. RESULTS: Overall, 134 doctoral and 96 post-doctoral applicants participated; two-thirds were from allied health professions. Most were early in their research career. Interest in research was most frequently sparked by interaction with people in research positions. Nearly half had their first research experience during their BSc project; though less often for nurses/midwives/health visitors (37.5%) than other NMAHPs (51.6%). The award of a fellowship resulted in higher likelihood of being research-active (doctoral level). Nearly three quarters pursuing a clinical academic career indicated 'clearer career paths' and 'greater integration across clinical and academic departments' were desirable. Most common barriers related to research roles, availability of positions and funding. CONCLUSIONS: Fellowship schemes are important to NMAHPs' research careers, but there are serious challenges to establishing and sustaining a career. RELEVANCE TO CLINICAL PRACTICE: Lack of a clear model of career progression, at national and local level, and barriers to creating joint posts impacts on capacity of clinical academics to strengthen integration of research with practice.

Cancer-related fatigue and treatment burden in surgically treated colorectal cancer patients - A cross-sectional study.

OBJECTIVE: This cross-sectional study aimed to describe cancer-related fatigue (CRF) in colorectal cancer (CRC) patients who were surgically treated with curative intent, identify subgroups at risk of elevated fatigue levels and explore associations between CRF and treatment burden. BACKGROUND: CRF is a prominent symptom among cancer patients. In patients treated for CRC, CRF is associated with adjuvant treatments, low quality of life and reduced ability to self-manage. METHODS: One hundred thirty-four patients with CRC treated at a Norwegian university hospital between 2016-2018 were included. The Schwartz Cancer Fatigue Scale-6 and the Patient Experience with Treatment and Self-management questionnaires were applied for data collection. Statistical analyses included descriptive statistics and non-parametric approaches to analyse correlations and identify differences between groups. The study adhered to STROBE Statement checklist for reporting of cross-sectional studies. RESULTS: Median fatigue level was 10.0 (range: 7.0-13.0). Physical fatigue was higher than perceptual fatigue, with medians of 6.0 (interquartile range [IQR]: 3.0-13.0) and 4.0 (IQR: 3.0-12.0), respectively. Higher fatigue levels were associated with age <60 years, advanced cancer and adjuvant treatments. Increased CRF was significantly associated with higher treatment burden on seven of the nine dimensions, adjusted for demographic and clinical variables. The association of fatigue and treatment burden was stronger in survivors <60 years, with advanced cancer, 6-12 months since surgery or who had more comorbid conditions. CONCLUSIONS: This study showed patients at risk of experiencing CRF following CRC treatment. It established proof of associations between CRF and treatment burden and identified subgroups of CRC patients where this association was stronger. RELEVANCE TO CLINICAL PRACTICE: Screening of CRF in CRC patients can help clinicians provide individualized treatment and care to manage CRF. Clinicians should consider the association between CRF and treatment burden, especially in subgroups of CRF patients.

Prevalence and determinants of depression up to 5 years after colorectal cancer surgery: results from the ColoREctal Wellbeing (CREW) study.

AIM: Depression experienced by people with colorectal cancer (CRC) is an important clinical problem affecting quality of life. Recognition of depression at key points in the pathway enables timely referral to support. This study aimed to examine depression before and 5 years after surgery to examine its prevalence and identify determinants. METHOD: The ColoREctal Wellbeing (CREW) study is a prospective UK cohort study involving 872 adults with nonmetastatic CRC recruited before surgery with curative intent. Questionnaires completed before surgery and 3, 9, 15, 24, 36, 48 and 60 months after surgery captured socio-demographics and assessed depression (Centre for Epidemiologic Studies Depression Scale, CES-D) and other psychosocial factors. Clinical details were also gathered. We present the prevalence of clinically significant depression (CES-D ≥ 20) over time and its predictors assessed before and 2 years after surgery. RESULTS: Before surgery, 21.0% of the cohort reported CES-D ≥ 20 reducing to 14.7% 5 years after surgery. Presurgery risk factors predicting subsequent depression were clinically significant depression and anxiety, previous mental health service use, low self-efficacy, poor health, having neoadjuvant treatment and low social support. Postsurgery risk factors at 2 years predicting subsequent depression were clinically significant depression, negative affect, cognitive dysfunction, accommodation type and poor health. CONCLUSION: Depression is highly pervasive in people with CRC, exceeding prevalence in the general population across follow-up. Our findings emphasize the need to screen and treat depression across the pathway. Our novel data highlight key risk factors of later depression at important and opportune time points: before surgery and at the end of routine surveillance. Early recognition and timely referral to appropriate support is vital to improve long-term psychological outcomes.

Factors influencing treatment burden in colorectal cancer patients undergoing curative surgery: A cross-sectional study.

OBJECTIVE: To describe the severity of treatment burden in surgically treated colorectal cancer (CRC) patients and examine associations between treatment burden and demographic and clinical variables. METHODS: This cross-sectional study recruited 134 patients diagnosed with Dukes' stage A-C CRC between 2016 and 2018 who underwent curative surgery. The Patient Experience with Treatment and Self-management (PETS) questionnaire assessed treatment burden domains of 'workload', 'stressors' and 'impact' between 6 weeks and 18 months after primary surgery. RESULTS: Highest scores were observed for difficulty with healthcare services (median score 33.3), physical and mental fatigue (median score 30.0) and medical information (median score 26.8). Younger age, low education level or no cohabitants were significantly associated with higher workload PETS scores (p < 0.05, 0.013, p = 0.047, respectively). Higher PETS stressors scores were significantly associated with younger age (p = 0.006), lower education level (p = 0.016), and high comorbidity (p = 0.013). Higher PETS impact scores were significantly associated with the female sex (p = 0.050), younger age (p = <0.001-0.003), lower education (p = 0.003), no cohabitants (p = 0.003), high comorbidity (p = 0.003) and cancer stage Dukes A (p = 0.004). CONCLUSIONS: A seamless and supportive healthcare system beyond hospitalisation targeting CRC subpopulations in danger of high treatment burden may improve patients' self-management experience.

Unmet supportive care needs of breast, colorectal and testicular cancer survivors in the first 8 months post primary treatment: A prospective longitudinal survey.

OBJECTIVES: To explore the supportive care needs of cancer survivors, the characteristics of patients with high levels of unmet need, changes in unmet need after treatment ends and differences in unmet needs of breast, colorectal and testicular survivors. METHODS: The method used was a prospective longitudinal mailed survey. Unmet needs, measured by 25-item modified Cancer Survivors Unmet Needs survey at baseline (immediately post-treatment) and 8 months later, were analysed descriptively. RESULTS: Of 434 breast, 186 colorectal and 75 testicular patients responding at baseline, 56.2%, 65.6% and 50.7%, respectively, had no unmet needs, the top decile having ≥10 (breast) or seven (colorectal and testicular) different needs and seven different unmet needs. The most frequently reported unmet need (all groups) was fear of cancer recurrence. Unmet needs fell significantly at 8 months for breast patients. Some patients reported new needs. Needs were lowest amongst colorectal survivors and differed between the three groups. Higher levels of unmet needs (breast and colorectal) were associated with having had chemotherapy. CONCLUSION: Most survivors reported few unmet needs, but a small proportion have persisting or emerging needs. Routine or regular monitoring of unmet needs is required so that healthcare professionals can deliver personalised care based on individual needs, preferences and circumstances.

Self-management in older people living with cancer and multi-morbidity: A systematic review and synthesis of qualitative studies.

OBJECTIVE: Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity. METHODS: Six databases were systematically searched for primary qualitative research reporting older adults' experiences of living with cancer and multimorbidity (eg, Medline, Embase, and CINAHL). A thematic synthesis was guided by Shippee's model of cumulative complexity. Text labelled as results in the included papers was treated as data. RESULTS: Twenty-eight studies were included. While the included studies varied in their focus, our analysis highlighted a number of important themes consistent across the studies. Health conditions with the greatest negative impact on independent living assumed the greatest importance, sometimes meaning their cancer was a low priority. Self-management practices seen as likely to interfere with quality of life were deprioritized unless viewed as necessary to maintain independence. When burden outweighed capacity, people were reluctant to ask for help from others in their social network. The contribution of formal healthcare services to supporting self-management was relatively peripheral. CONCLUSIONS: Old age and multimorbidity together may complicate self-management after cancer, threatening health and well-being, creating burden and diminishing capacity. Older adults prioritized self-management practices they considered most likely to enable them to continue to live independently. The protocol was registered with Prospero (CRD42018107272).

Telephone interventions for symptom management in adults with cancer.

BACKGROUND: People with cancer experience a variety of symptoms as a result of their disease and the therapies involved in its management. Inadequate symptom management has implications for patient outcomes including functioning, psychological well-being, and quality of life (QoL). Attempts to reduce the incidence and severity of cancer symptoms have involved the development and testing of psycho-educational interventions to enhance patients' symptom self-management. With the trend for care to be provided nearer patients' homes, telephone-delivered psycho-educational interventions have evolved to provide support for the management of a range of cancer symptoms. Early indications suggest that these can reduce symptom severity and distress through enhanced symptom self-management. OBJECTIVES: To assess the effectiveness of telephone-delivered interventions for reducing symptoms associated with cancer and its treatment. To determine which symptoms are most responsive to telephone interventions. To determine whether certain configurations (e.g. with/without additional support such as face-to-face, printed or electronic resources) and duration/frequency of intervention calls mediate observed cancer symptom outcome effects. SEARCH METHODS: We searched the following databases: the Cochrane Central Register of Controlled Trials (CENTRAL; 2019, Issue 1); MEDLINE via OVID (1946 to January 2019); Embase via OVID (1980 to January 2019); (CINAHL) via Athens (1982 to January 2019); British Nursing Index (1984 to January 2019); and PsycINFO (1989 to January 2019). We searched conference proceedings to identify published abstracts, as well as SIGLE and trial registers for unpublished studies. We searched the reference lists of all included articles for additional relevant studies. Finally, we handsearched the following journals: Cancer, Journal of Clinical Oncology, Psycho-oncology, Cancer Practice, Cancer Nursing, Oncology Nursing Forum, Journal of Pain and Symptom Management, and Palliative Medicine. We restricted our search to publications published in English. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and quasi-RCTs that compared one or more telephone interventions with one other, or with other types of interventions (e.g. a face-to-face intervention) and/or usual care, with the stated aim of addressing any physical or psychological symptoms of cancer and its treatment, which recruited adults (over 18 years) with a clinical diagnosis of cancer, regardless of tumour type, stage of cancer, type of treatment, and time of recruitment (e.g. before, during, or after treatment). DATA COLLECTION AND ANALYSIS: We used Cochrane methods for trial selection, data extraction and analysis. When possible, anxiety, depressive symptoms, fatigue, emotional distress, pain, uncertainty, sexually-related and lung cancer symptoms as well as secondary outcomes are reported as standardised mean differences (SMDs) with 95% confidence intervals (CIs), and we presented a descriptive synthesis of study findings. We reported on findings according to symptoms addressed and intervention types (e.g. telephone only, telephone combined with other elements). As many studies included small samples, and because baseline scores for study outcomes often varied for intervention and control groups, we used change scores and associated standard deviations. The certainty of the evidence for each outcome was interpreted using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. MAIN RESULTS: Thirty-two studies were eligible for inclusion; most had moderate risk of bias,often related to blinding. Collectively, researchers recruited 6250 people and studied interventions in people with a variety of cancer types and across the disease trajectory, although many participants had breast cancer or early-stage cancer and/or were starting treatment. Studies measured symptoms of anxiety, depression, emotional distress, uncertainty, fatigue, and pain, as well as sexually-related symptoms and general symptom intensity and/or distress. Interventions were primarily delivered by nurses (n = 24), most of whom (n = 16) had a background in oncology, research, or psychiatry. Ten interventions were delivered solely by telephone; the rest combined telephone with additional elements (i.e. face-to-face consultations and digital/online/printed resources). The number of calls delivered ranged from 1 to 18; most interventions provided three or four calls. Twenty-one studies provided evidence on effectiveness of telephone-delivered interventions and the majority appeared to reduce symptoms of depression compared to control. Nine studies contributed quantitative change scores (CSs) and associated standard deviation results (or these could be calculated). Likewise, many telephone interventions appeared effective when compared to control in reducing anxiety (16 studies; 5 contributed quantitative CS results); fatigue (9 studies; 6 contributed to quantitative CS results); and emotional distress (7 studies; 5 contributed quantitative CS results). Due to significant clinical heterogeneity with regards to interventions introduced, study participants recruited, and outcomes measured, meta-analysis was not conducted. For other symptoms (uncertainty, pain, sexually-related symptoms, dyspnoea, and general symptom experience), evidence was limited; similarly meta-analysis was not possible, and results from individual studies were largely conflicting, making conclusions about their management through telephone-delivered interventions difficult to draw. Heterogeneity was considerable across all trials for all outcomes. Overall, the certainty of evidence was very low for all outcomes in the review. Outcomes were all downgraded due to concerns about overall risk of bias profiles being frequently unclear, uncertainty in effect estimates and due to some inconsistencies in results and general heterogeneity. Unsubstantiated evidence suggests that telephone interventions in some capacity may have a place in symptom management for adults with cancer. However, in the absence of reliable and homogeneous evidence, caution is needed in interpreting the narrative synthesis. Further, there were no clear patterns across studies regarding which forms of interventions (telephone alone versus augmented with other elements) are most effective. It is impossible to conclude with any certainty which forms of telephone intervention are most effective in managing the range of cancer-related symptoms that people with cancer experience. AUTHORS' CONCLUSIONS: Telephone interventions provide a convenient way of supporting self-management of cancer-related symptoms for adults with cancer. These interventions are becoming more important with the shift of care closer to patients' homes, the need for resource/cost containment, and the potential for voluntary sector providers to deliver healthcare interventions. Some evidence supports the use of telephone-delivered interventions for symptom management for adults with cancer; most evidence relates to four commonly experienced symptoms - depression, anxiety, emotional distress, and fatigue. Some telephone-delivered interventions were augmented by combining them with face-to-face meetings and provision of printed or digital materials. Review authors were unable to determine whether telephone alone or in combination with other elements provides optimal reduction in symptoms; it appears most likely that this will vary by symptom. It is noteworthy that, despite the potential for telephone interventions to deliver cost savings, none of the studies reviewed included any form of health economic evaluation. Further robust and adequately reported trials are needed across all cancer-related symptoms, as the certainty of evidence generated in studies within this review was very low, and reporting was of variable quality. Researchers must strive to reduce variability between studies in the future. Studies in this review are characterised by clinical and methodological diversity; the level of this diversity hindered comparison across studies. At the very least, efforts should be made to standardise outcome measures. Finally, studies were compromised by inclusion of small samples, inadequate concealment of group allocation, lack of observer blinding, and short length of follow-up. Consequently, conclusions related to symptoms most amenable to management by telephone-delivered interventions are tentative.

The ENABLE study protocol: Understanding and characterising the value and role of self-management support for people living with cancer that is treatable but not curable.

OBJECTIVE: Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self-manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self-management support for people living with treatable but incurable cancer. METHODS: Qualitative longitudinal methods will examine how support needs change over time in relation to self-management and unpredictable disease trajectories. Thirty patients and 30 carers will be recruited from two hospitals, each participating in three interviews over 1 year. Patients will be purposively sampled according to age, gender, cancer type and anticipated survival. Carers will be recruited via nomination by patients but interviewed separately. One-off interviews will be conducted with 20 healthcare professionals, providing data from multiple perspectives. Based on interview findings, a modified Delphi process will map areas of consensus and disparity regarding conceptualisations and outcomes of self-management support. CONCLUSION: The key output will be practice recommendations in relation to self-management support, producing evidence to inform service innovation for those living with treatable but incurable cancer.

Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home.

BACKGROUND: Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. METHODS: The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n = 22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n = 3), and in-depth evaluation meetings (n = 2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. RESULTS: Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members' involvement in discharge decisions and end-of-life care planning. CONCLUSION: The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study. TRIAL REGISTRATION: n/a.

Supporting patient access to medicines in community palliative care: on-line survey of health professionals' practice, perceived effectiveness and influencing factors.

BACKGROUND: Patient access to medicines at home during the last year of life is critical for symptom control, but is thought to be problematic. Little is known about healthcare professionals' practices in supporting timely medicines access and what influences their effectiveness. The purpose of the study was to evaluate health professionals' medicines access practices, perceived effectiveness and influencing factors. METHODS: On-line questionnaire survey of health care professionals (General Practitioners, Community Pharmacists, community-based Clinical Nurse Specialists and Community Nurses) delivering end-of-life care in primary and community care settings in England. Quantitative data were analysed using descriptive statistics. RESULTS: One thousand three hundred twenty-seven responses were received. All health professional groups are engaged in supporting access to prescriptions, using a number of different methods. GPs remain a predominant route for patients to access new prescriptions in working hours. However, nurses and, increasingly, primary care-based pharmacists are also actively contributing. However, only 42% (160) of Clinical Nurse Specialists and 27% (27) of Community Nurses were trained as prescribers. The majority (58% 142) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Satisfaction with access to shared patient records to facilitate medicines access was low: 39% (507) were either Not At All or only Slightly satisfied. Out-of-hours specialist cover was reported by less than half (49%; 656) and many General Practitioners and pharmacists lacked confidence advising about out-of-hours services. Respondents perceived there would be a significant improvement in pain control if access to medicines was greater. Those with shared records access reported significantly lower pain estimates for their caseload patients. CONCLUSIONS: Action is required to support a greater number of nurses and pharmacists to prescribe end-of-life medicines. Solutions are also required to enable shared access to patient records across health professional groups. Coverage and awareness of out-of-hours services to access medicines needs to be improved.

Follow-up care after treatment for prostate cancer: evaluation of a supported self-management and remote surveillance programme.

BACKGROUND: Alternative models of cancer follow-up care are needed to ameliorate pressure on services and better meet survivors' long-term needs. This paper reports an evaluation of a service improvement initiative for the follow-up care of prostate cancer patients based on remote monitoring and supported self-management. METHODS: This multi-centred, historically controlled study compared patient reported outcomes of men experiencing the new Programme with men experiencing a traditional clinic appointment model of follow-up care, who were recruited in the period immediately prior to the introduction of the Programme. Data were collected by self-completed questionnaires, with follow up measurement at four and eight months post-baseline. The primary outcome was men's unmet survivorship needs, measured by the Cancer Survivors' Unmet Needs Survey. Secondary outcomes included cancer specific quality of life, psychological wellbeing and satisfaction with care. The analysis was intention to treat. Regression analyses were conducted for outcomes at each time point separately, controlling for pre-defined clinical and demographic variables. All outcome analyses are presented in the paper. Costs were compared between the two groups. RESULTS: Six hundred and twenty-seven men (61%) were consented to take part in the study (293 in the Programme and 334 in the comparator group.) Regarding the primary measure of unmet survivorship needs, 25 of 26 comparisons favoured the Programme, of which 4 were statistically significant. For the secondary measures of activation for self-management, quality of life, psychological well-being and lifestyle, 20 of 32 comparisons favoured the Programme and 3 were statistically significant. There were 22 items on the satisfaction with care questionnaire and 13 were statistically significant. Per participant costs (British pounds, 2015) in the 8 month follow up period were slightly lower in the programme than in the comparator group (£289 versus £327). The Programme was acceptable to patients. CONCLUSION: The Programme is shown to be broadly comparable to traditional follow-up care in all respects, adding to evidence of the viability of such models.