Unmet social care needs of people living with and beyond cancer: prevalence and predictors from an English longitudinal survey

Objectives: This study estimates the prevalence of unmet social care needs of people over 50 living in England with cancer and the effect of cancer on unmet needs. Methods: We used data from the English Longitudinal Study of Ageing. We estimated the mean, standard deviation and 95% CI of the prevalence of unmet social care needs among people with cancer. Logistic regression analysis with individual random effects was used to estimate the effect of cancer on unmet needs controlling for other determinants. Pain measures were included stepwise in the regression to estimate their mediating effect. Results: The prevalence rate of unmet social care needs among people living with cancer is 9% (SD=0.29; 95% CI: 8.3-10) compared to 6% (SD=0.24; 95% CI: 6.1-6.5) among people without cancer. People with cancer have significantly higher odds of having unmet needs by a factor of 1.44 (95% CI: 1.20-1.72), after controlling for the effect of other characteristics. Adding pain measures reduces the effect of cancer to a factor of 1.36 (95% CI: 1.14-1.64) in the odds of unmet needs but still remains statistically significant. Conclusions: A more integrated approach to cancer care is more likely to address the high level of unmet needs and consequent adverse implications

Development of an app for lung cancer survivors (iEXHALE) to increase exercise activity and improve symptoms of fatigue, breathlessness and depression

Objective. Exercise-based self-management interventions are recommended for lung cancer survivors and can provide physical, psychosocial and emotional relief. Mobile health technologies can encourage self-management; however, currently no cancer-related apps address exercise specific needs of lung cancer survivors. This paper details the design, development and testing of an exercise app for lung cancer survivors (iEXHALE) which aims to increase exercise activity and improve symptoms.   Methods. The research had two stages: 1) focus groups with healthcare professionals, patients and family members (n=21) 2) app development and usability study with lung cancer survivors (n=6). The Capability, Opportunity, Motivation-Behaviour model was used as a theoretical framework; data were thematically analysed. Results. Focus group findings identified many helpful exercises for managing lung cancer survivors’ symptoms. These findings, alongside relevant literature, informed iEXHALE’s content and design. The usability study found that lung cancer survivors valued iEXHALE’s self-management capabilities, but identified potential modifications, including improved self-monitoring diaries and navigation.   Conclusions. iEXHALE’s development has been theoretically and empirically informed, showing value as a self-management tool. Next, we will test its effectiveness, acceptability and cost-effectiveness

Comparing hospital and telephone follow-up for patients treated for Stage I endometrial cancer 3 (ENDCAT Trial): a randomised, multicentre, non-inferiority trial

Objective To evaluate the effectiveness of nurse-led telephone follow-up (TFU) for Stage I endometrial cancer patients. Design Multicentre, randomised, non-inferiority trial Setting Five centres in the North West of England Sample 259 women treated for Stage I endometrial cancer attending hospital outpatient clinics for routine follow-up Methods Participants were randomly allocated to receive traditional hospital based follow-up (HFU) or nurse-led TFU. Main outcome measures Primary outcomes were psychological morbidity (State Trait Anxiety Inventory, STAI-S) and patient satisfaction with information. Secondary outcomes included patient satisfaction with service, quality of life, and time to detection of recurrence. Results STAI-S scores post-randomisation were similar between groups (mean [SD] TFU 33.0 [11·0], HFU 35.5 [13.0]). The estimated between group difference in STAI was 0·7 (95%CI -1·9 to 3·3); the CI lies above the non-inferiority limit (-3·5) indicating non-inferiority of TFU. There was no significant difference between groups in reported satisfaction with information (OR 0·9, 95% CI 0·4 to 2·1, p=0·83). The HFU group were more likely to report being kept waiting for their appointment (p=0.001), that they did not need any information (p=0.003) and were less likely to report that the nurse knew about their particular case and situation (p=0.005). Conclusions TFU provides an effective alternative to HFU for Stage I endometrial cancer patients, with no reported physical or psychological detriment. Patient satisfaction with information was high, with similar levels between group

Carers of people affected by cancer and other long-term conditions at end of life: a qualitative study of providing a bespoke package of support in a rural setting

Background: A UK charity, Macmillan Cancer Support has funded a local intervention, whereby carers of people affected by cancer and other long-term conditions at end of life are offered a bespoke package of support. Aim: This short report describes the qualitative experiences of carers in receipt of the intervention. Design: Qualitative research utilising in-depth interviews. Discussions were digitally recorded and transcribed verbatim. Data were analysed using thematic analysis. Setting/participants: Participants were carers (n = 10) in receipt of the intervention. Interviews were conducted between August and September 2014 in Lincolnshire (England). Results: Five themes from the interviews were identified: (1) Awareness and advertising, (2) focus of support on the carer, (3) modes of communication, (4) personal attributes and skills of the support worker (5) streamlining and signposting. Conclusion: The intervention was successful within a social care setting. The participants had no overtly negative opinions on the service in its current format and all held it in high regard. Carers felt a sense of reassurance from having background support and maintained that their situation would have been worse had this support not been there

Open Access Follow-up Care for Early Breast Cancer: A Randomised Controlled Quality of Life Analysis

This study evaluated the acceptability of a supportive model of follow-up. One hundred and twelve women recovering from breast cancer were randomised to receive standard breast clinic aftercare (Control n=56) or on demand by open access aftercare by breast care nurses (Intervention n=56). Participants attended a support-based psycho-educational program delivered in four half day group sessions. Three quality of life questionnaires (EORTC QLQ-C30, QLQ-BR23, HADS) were administered at baseline and 6-monthly intervals for two years. Multilevel linear regression modelling methods were used for evaluation. Age was found to be a statistically significant predictor of quality of life in several sub-scales. Increasing age was negatively associated with sexual functioning, systematic therapy side effects and physical functioning, and positively associated with future perspective. Aftercare assignment was not found to be a statistically significant predictor. Women treated for early breast cancer were not disadvantaged by allocation to the open access supportive care model in terms of quality of life experienced. The model for follow-up was demonstrated to be a feasible alternative to routinized hospital based follow-up and adds to the evidence for stratified follow-up for low risk cancer patients, incorporating self-management education. Stratified follow-up pathways are viewed as a preferable approach

Quality of Life and Experience of Care in Women With Metastatic Breast Cancer: A Cross-Sectional Survey

Context: Despite developments in the medical management of metastatic breast cancer, little is known about the quality of life (QoL) and experience of care in women with it.Objectives: To explore QoL, experience of care, and support needs of women living with metastatic breast cancer in the U.K.Methods: Questionnaire-based, cross-sectional study, undertaken in two U.K. cancer centers and online via the Breast Cancer Care website, assessing QoL and experience of care in 235 women with metastatic breast cancer.Results: QoL was assessed using the Functional Assessment of Cancer Therapy—Breast QoL measure. Overall, QoL was low (mean 89.0, standard deviation 21.8) for total score. Low scores were seen uniformly in physical, social, emotional, and functional well-being domains. Symptom burden was a significant problem, with over one-third of women (34%) reporting high levels of pain and other uncontrolled symptoms. In multiple regression analysis, social well-being was significantly better for older women (P < 0.001) but was lower in those with bone metastases only (P = 0.002). Functional well-being was significantly higher in women without children (P = 0.004). Satisfaction with experience of care was low and appeared to be predominantly in the hospital setting, with little evidence of involvement of general practitioners and palliative care services.Conclusion: Despite improvements in treatment and survival of women with metastatic breast cancer, this group reports high symptom burden and dissatisfaction with elements of their care, indicating that alternative models of service delivery should be explored

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