Effectiveness of the “Living with Cancer” peer self-management support program for persons with advanced cancer and their relatives: study protocol of a non-randomized stepped wedge study

K. L. Luu*, F. E. Witkamp, D. Nieboer, E. M. Bakker, L. W. Kranenburg, C. C.D. van der Rijt, K. Lorig, A. van der Heide, J. A.C. Rietjens

*Corresponding author for this work

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Abstract

Background: Persons with advanced cancer and their relatives experience physical, emotional, and psychosocial consequences of the illness. Most of the time, they must deal with these themselves. While peer self-management support programs may be helpful, there is little evidence on their value for this population. We present the research protocol of our SMART study that will evaluate the effectiveness of the “Living with Cancer” peer self-management support program, aimed at improving self-management behaviors, self-efficacy, and health-related quality of life of persons with advanced cancer and their relatives. Methods: We will conduct a non-randomized stepped wedge study in the Netherlands. We will include 130 persons with advanced cancer and 32 relatives. Participants can choose to either start the program within 4 weeks after inclusion or after eight to 10 weeks. The “Living with Cancer” is a peer self-management support program, based on the Chronic Disease Self-Management Program. It consists of six 1,5 hours video-conferencing group meetings with eight to 12 participants, preceded by two or three preparatory audio clips with supportive text per session. The program has the following core components: the learning of self-management skills (action-planning, problem-solving, effective communication, and decision-making), discussing relevant themes (e.g. dealing with pain and fatigue, living with uncertainty, and future planning), and sharing experiences, knowledge, and best practices. The primary outcome for both persons with advanced cancer and relatives is self-management behavior assessed by the subscale “constructive attitudes and approaches” of the Health Education Impact Questionnaire. Secondary outcomes are other self-management behaviors, self-efficacy, health-related quality of life, symptoms, depression and anxiety, and loneliness. Participants complete an online questionnaire at baseline, and after eight and 16 weeks. After each session, they complete a logbook about their experiences. Group meetings will be video recorded. Discussion: SMART aims to evaluate an innovative program building on an evidence-based self-management program. New features are its use for persons with advanced cancer, the inclusion of relatives, and the video-conferencing format for this population. The use of both quantitative and qualitative analyses will provide valuable insight into the effectiveness and value of this program. Trial registration: This study was registered in the Dutch Trial Register on October 2021, identifier NL9806.

Original languageEnglish
Article number107
JournalBMC Palliative Care
Volume21
Issue number1
DOIs
Publication statusPublished - 13 Jun 2022

Bibliographical note

Funding Information:
This study is part of the project “Patient engagement in advanced cancer care: a 21 century myth or miracle?” funded by the Dutch Research Council (NWO, VIDI), file number 91717386. The funder had no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript. st

Publisher Copyright: © 2022, The Author(s).

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