Abstract

Aim: Community-based psychosocial support centres for cancer patients and their relatives (CBPSCs) in the Netherlands offer easily accessible contacts with fellow patients and support by trained volunteers and/or professionals. We studied if the participants in the social support and/or therapy activities are satisfied with these services and if the visits do affect their well-being in terms of bodily and emotional health and their health quality of life (HQoL).Methods: In 25 CBPSCs, 701visitors filled out a web-based questionnaire about their experiences with CBPSCs. Within this sample, 203 participants answered a part of the questionnaire again after 3-5 months about their personal characteristics, the type participation at the visits, their satisfaction with the offered activities, the experienced health complains, and three HQoL questions of the EORTC measure.Results: The study confirms the significance of CBPSCs contacts with fellow patients, resulting in satisfaction with the increased communication about their illness and talks about their problems. The results show further that after a 3-5 months the health complains did not change, but the HQoL decreased significantly for all visitors, except for more serious ill patients in comparison with less ill patients. Discussion and conclusion CBPSCs play an important and highly evaluated role in psycho-oncological support. The visit for serious ill patients may function as a buffer for preventing the decrease of their HQoL. Insight in effects of such visits is still limited in other studies. Differences in the health care organization restrict the comparability with the CBPSCs in other countries. More studies are needed to show the long-term effects of CBPSCs visits.

Highlights

  • Cancer and its treatment cause for a lot of patients and their relatives several problems in terms of practical day life, physical, emotional, social, financial, and meaning of life problems [1]

  • AIM OF THE STUDY We firstly studied whether the visits to CBPSCs are appreciated by the patients, and mainly secondly if they may influence the well-being of cancer patients in terms of lowering their health complains and increasing their health-related quality of life, taking in account other factors that may influence the well-being of the cancer patients

  • The development of the described small, informal organizations for psychosocial support for cancer patients run by volunteers, is a profit for them

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Summary

Introduction

Cancer and its treatment cause for a lot of patients and their relatives several problems in terms of practical day life, physical, emotional, social, financial, and meaning of life problems [1]. Barriers in referrals and high costs for the patients, the above-mentioned forms of supportive care are often not accessible for cancer patients [10, 12] This was an important reason that patient organisations, and in cooperation with health care professionals, took initiatives to found private patient-oriented support centres in several countries [13, 14]. Examples of these centres are the several Maggie’ centres in the UK (Barcelona and Hongkong), stressing the importance of beautiful and healing architecture, sometimes close related with or in hospitals. These facilities are appreciated and minor effects are reported of acupuncture and cognitive

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