Identifying Social Distress: A Cross-Sectional Survey of Social Outcomes 12 to 36 Months After Colorectal Cancer Diagnosis.

PURPOSE: To establish the prevalence and determinants of poor social outcomes after a diagnosis of colorectal cancer (CRC). PATIENTS AND METHODS: All 12- to 36-month survivors of CRC (International Classification of Diseases [10th revision] codes C18 to C20) diagnosed in 2010 or 2011 and treated in the English National Health Service were identified and sent a questionnaire from their treating cancer hospital. This included the Social Difficulties Inventory, a 16-item scale of social distress (SD) comprising everyday living, money matters, and self and others subscales, plus five single items. Sociodemographic and clinical data were also collected. Analyses using descriptive statistics, χ(2) tests, and logistic regression models were conducted. RESULTS: Response rate was 63.3% (21,802 of 34,467). Of the 21,802 participants, 17,830 (81.8%) completed all SD items; 2,688 (15.1%) of these 17,830 respondents were classified as experiencing SD (everyday living, 19.5%; money matters, 15.6%; self and others, 18.1%). Multivariable analysis demonstrated having ≥ three long-term conditions was the strongest predictor of SD (odds ratio [OR], 6.64; 95% CI, 5.67 to 7.77 compared with no long-term conditions), followed by unemployment (OR, 5.11; 95% CI, 4.21 to 6.20 compared with being employed), having recurrent or nontreatable disease (OR, 2.75; 95% CI, 2.49 to 3.04 compared with being in remission), and having a stoma (OR, 2.10; 95% CI, 1.86 to 2.36 compared with no stoma). Additional predictors of SD were young age (< 55 years), living in a more deprived area, nonwhite ethnicity, having advanced-stage disease, having undergone radiotherapy, and being a carer. CONCLUSION: Although it is reassuring a majority do not experience social difficulties, a minority reported significant SD 12 to 36 months after diagnosis of CRC. The identified clinical and social risk factors are easy to establish and should be used to target support.

Prostate cancer outcomes: the three questions.

Enhanced survival and therapeutic choices for men with prostate cancer mandate the evaluation of the "quality of survival". An exciting series of local, national and international health outcome improvement initiatives offer the enticing prospect of assessing and improving this.

Lessons learnt recruiting to a multi-site UK cohort study to explore recovery of health and well-being after colorectal cancer (CREW study).

BACKGROUND: The UK leads the world in recruitment of patients to cancer clinical trials, with a six-fold increase in recruitment during 2001-2010. However, there are large variations across cancer centres. This paper details recruitment to a large multi-centre prospective cohort study and discusses lessons learnt to enhance recruitment. METHODS: During CREW (ColoREctal Wellbeing) cohort study set up and recruitment, data were systematically collected on all centres that applied to participate, time from study approval to first participant recruited and the percentage of eligible patients recruited into the study. RESULTS: 30 participating NHS cancer centres were selected through an open competition via the cancer networks. Time from study approval to first participant recruited took a median 124 days (min 53, max 290). Of 1350 eligible people in the study time frame, 78% (n = 1056) were recruited into the study, varying from 30-100% eligible across centres. Recruitment of 1056 participants took 17 months. CONCLUSION: In partnership with the National Cancer Research Network, this successful study prioritised relationship building and education. Key points for effective recruitment: pre-screening and selection of centres; nurses as PIs; attendance at study days; frequent communication and a reduced level of consent to enhance uptake amongst underrepresented groups.

A randomized controlled trial of relaxation training to reduce hot flashes in women with primary breast cancer.

Hot flashes are experienced by about 52% of perimenopausal women. After breast cancer, this may increase to 70%. The use of hormone replacement therapy is not recommended in women who have had breast cancer; therefore, alternatives are required to help relieve hot flashes. This study was conducted to assess the efficacy of relaxation training in reducing the incidence of hot flashes in women with primary breast cancer. This was a randomized controlled trial of 150 women with primary breast cancer who experienced hot flashes. The intervention group received a single relaxation training session and was instructed to use practice tapes on a daily basis at home for one month; the control group received no intervention. Outcomes were incidence and severity of flashes using a diary and validated measures of anxiety and quality of life. The incidence and severity of hot flashes, as recorded by diaries, each significantly declined over one month (P<0.001 and P=0.01, respectively), compared with the control group. Distress caused by flashes also significantly declined in the treatment group over one month (P=0.01), compared with the control group. There were no significant differences between the treatment group and the control group at three months and no changes in anxiety or quality-of-life measures. Relaxation may be a useful component of a program of measures to relieve hot flashes in women with primary breast cancer.

How to involve cancer patients at the end of life as co-researchers.

The importance of user involvement in the organisation and delivery of health services and the conduct of research has increased over recent decades. Involving people at the end of life in research remains an under-developed area of research activity. The Macmillan Listening Study, a UK-wide study exploring research views and priorities of people affected by cancer, adopted a participatory research approach. Patients and carers, including two participants receiving palliative care services, collaborated in all aspects of the study as co-researchers. In this paper, we discuss the experience of working with co-researchers to collect data from two hospices. We will discuss practical, ethical and methodological challenges, including specific training needs and the emotional demands of conducting the research. Recommendations are made to facilitate successful collaboration with palliative care service users in end of life research.

The prevalence of concern about weight loss and change in eating habits in people with advanced cancer.

Weight loss and anorexia are commonly reported symptoms in people with advanced cancer. Little is known about patient experience of these phenomena, in particular whether they find them of concern. In this study, the prevalence of weight loss and eating-related concern was evaluated in patients with advanced cancer receiving specialist palliative homecare. The survey was a component of a larger study exploring the potential for helping patients and their families live with weight loss and change in eating habits. Patients were under the care of two specialist palliative homecare teams in the south of England in 2003. The questionnaire was distributed to the total eligible caseload of 233 patients with advanced cancer. The response rate was 85%. More than three-quarters of the 199 patients who returned the questionnaires reported weight loss (79%) and/or eating less (76%). Excluding the 32 patients (16%) who had sought help from a family member or friend to complete the questionnaires, more than half (52%) reported concern about weight loss and/or eating. Concern about weight loss or eating was found irrespective of proximity to death. Weight loss and eating-related concerns are commonly experienced by people with advanced cancer receiving palliative homecare. Further work is needed to establish if concerns are amenable to interventions that translate into meaningful outcomes for patients and their families.

Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life.

Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients.

Nurse-led models of chemotherapy care: mixed economy or nurse-doctor substitution?

AIM: This paper reports a study exploring the perspectives of people affected by cancer (service users) and health care professionals' about current medical consultant-led services and the acceptability of a proposed nurse-led ambulatory chemotherapy service. BACKGROUND: A number of studies have evaluated a nurse-led model of cancer care delivery but little work has been undertaken in chemotherapy settings. Furthermore, many of these studies give little information on how the perspective of users was incorporated in the design and evaluation of these services. METHODS: Service users (n = 26) and health care professionals (n = 22) were recruited across the South East of England. A qualitative study was undertaken... Using a semi-structured interview schedule, participants were asked to give their perceptions of current chemotherapy services and the potential of a nurse-led service. A thematic analysis of data was undertaken. FINDINGS: This paper focuses on the theme of the current and future context of a chemotherapy service. Three sub-themes were identified: contextualizing roles, defining therapeutic outcomes, and demonstrating effectiveness. All interviewees saw this role as different but complementary to the role of medical staff. There were mixed opinions from service users and professionals on the acceptability of nurse-led chemotherapy provision. In defining potential outcomes of nurse-led care, service users described benefits in terms of service and economic outcomes. Professionals saw additional benefits in terms of patient-based outcomes. Professionals and service users expressed the need for appropriate education of nurses for this role and rigorous evaluation of any new service before widespread implementation. CONCLUSIONS: Understanding the perspective of users is imperative when re-designing cancer nursing services. Implementation of nurse-led models in chemotherapy services should be preceded by staff education and followed by systematic evaluation.