Health care use and remaining needs for support among women with breast cancer in the first 15 months after diagnosis: the role of the GP.

BACKGROUND: The number of women with breast cancer in general practice is rising. To address their needs and wishes for a referral, GPs might benefit from more insight into women's health care practices and need for additional support. OBJECTIVE: To examine the prevalence of health care use and remaining needs among women with breast cancer in the first 15 months after diagnosis. METHODS: In this multicentre, prospective, observational study women with breast cancer completed a questionnaire at 6 and 15 months post-diagnosis. Medical data were retrieved through chart reviews. The prevalence of types of health care used and remaining needs related to medical, psychosocial, paramedical and supplementary service care (such as home care), was examined with descriptive analyses. RESULTS: Seven hundred forty-six women completed both questionnaires. At both assessments patients reported that they had most frequent contact with medical and paramedical providers, independent of types of treatment received. Three to fifteen percent of the patients expressed a need for more support. Prominent needs included a wish for more frequent contact with a physiotherapist, a clinical geneticist and a psychologist. Patients also wanted more help for chores around the house, particularly in the early post-treatment phase. CONCLUSION: A small but relevant percentage of women with breast cancer report having unmet needs. GPs may need to be particularly watchful of their need for more support from specific providers. Future research into the necessity of structural needs assessment among cancer patients in general practice is warranted.

Web-based information and support for patients with a newly diagnosed neuroendocrine tumor: a feasibility study.

PURPOSE: Patients with a neuroendocrine tumor (NET) frequently experience physical and psychosocial complaints. Novel strategies to provide information to optimize supportive care in these patients are of interest. The aim of this study was to examine whether the use of a web-based system consisting of self-screening of problems and care needs, patient education, and self-referral to professional health care is feasible in NET patients and to evaluate their opinion on this. METHODS: Newly diagnosed NET patients were randomized between standard care (n = 10) or intervention with additional access to the web-based system (n = 10) during 12 weeks. Patients completed questionnaires regarding received information, distress, quality of life (QoL), and empowerment. The intervention group completed a semi-structured interview to assess patients' opinion on the web-based system. RESULTS: The participation rate was 77% (20/26 invited patients) with no dropouts. The use of the web-based system had a negative effect on patients' perception and satisfaction of received information (range Cohen's d -0.88 to 0.13). Positive effects were found for distress (Cohen's d 0.75), global QoL (subscale European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30, Cohen's d 0.46), resolving problems with social functioning and finding information (subscales EORTC QLQ-GINET 21, Cohen's d 0.69, respectively, 1.04), and feeling informed (subscale empowerment questionnaire, Cohen's d 0.51). The interview indicated that the web-based system was of additional value to standard care. CONCLUSIONS: Use of this web-based system is feasible. Contradictory effects on informing and supporting NET patients were found and should be subject of further research. TRIAL REGISTRATION: NCT01849523.

Web-Based Tailored Psychoeducation for Breast Cancer Patients at the Onset of the Survivorship Phase: A Multicenter Randomized Controlled Trial.

CONTEXT: Many breast cancer patients have unmet informational and psychosocial needs after treatment completion. A psychoeducational intervention may be well suited to support these patients. OBJECTIVES: The purpose of this multicenter randomized controlled trial was to examine the effectiveness of a web-based tailored psychoeducational program (ENCOURAGE) for breast cancer patients, which aims to empower patients to take control over prevailing problems. METHODS: Female breast cancer patients from two hospitals in The Netherlands who recently completed (neo-)adjuvant chemotherapy were randomly assigned to standard care or 12-week access to the ENCOURAGE program providing fully automated information problem-solving strategies, resources, and services for reported problems. At six and 12 weeks, patients completed self-report questions on optimism and control over the future (primary outcome), feelings of being informed, and acceptance of the illness. At baseline and 12 weeks, distress and quality of life questionnaires were completed. RESULTS: About 138 patients were included. Almost all patients (67 of 69) visited ENCOURAGE as requested. No differences between the control and intervention group were observed for primary and secondary outcomes. An unplanned subgroup analysis showed that in clinically distressed patients (N = 57 at baseline; 41%), use of the ENCOURAGE program increased optimism and control over the future at 12 weeks more than in patients in the control group (Cohen's d = 0.65). CONCLUSION: Although the effectiveness was not demonstrated, a subgroup of women treated for breast cancer can probably be supported by the program. The results of the present study are a starting point for further development and use of the program.

Internet-based support programs to alleviate psychosocial and physical symptoms in cancer patients: a literature analysis.

In this review the effect of internet-based support programs on psychosocial and physical symptoms resulting from cancer diagnosis and treatment is analyzed. Selection of studies was based on the following criteria: (non-)randomized controlled trials, performed in adult cancer patients, comparing quantitative psychosocial and/or physical outcomes of an internet-based support program with (a) comparison group(s). Literature search yielded 2032 studies of which 16 fulfilled the eligibility criteria. Three different internet-based support programs were identified: social support groups, online therapy for psychosocial/physical symptoms, and online systems integrating information, support, and coaching services. Outcomes improved by these programs in nine studies. Especially fatigue, social support, and distress improved, regardless of the program type. All online systems showed positive effects, mainly for social support and quality of life. This analysis indicates that internet-based support programs are effective in improving psychosocial and physical symptoms in cancer patients.