Patient empowerment in cancer patiens during follow-up. A mixed methods study involving patients as steering group members and co-researchers.
Each year about 35.000 cancer patients who have finished initial treatment for cancer attend a follow-up program in Denmark. They can be seen as having a chronic disease that they have to live with, cope with and master. The Danish follow-up programs are currently being revised. One of the goals with the revisions are to provide follow-up programs that are more patient centered and with more patient involvement. However, there is a lack of knowledge – both nationally and internationally – about how this is best done. One concept central to this is patient empowerment. Patient empowerment can be defined as having the opportunity to influence and master one’s health, treatment and care, and ideally, it is about being both more patient centered and involving.
Goal
The goal of the present study are to focus on patient empowerment and structures, processes and relations that support patient empowerment in patients attending a cancer follow-up program. The study will explore what patient empowerment is for this patient group and when and how it is perceived as relevant.
Methods
The study uses a sequential exploratory mixed method research design. It begins with a qualitative part (interviews with patients, relatives and health professionals) to understand patient empowerment for this patient group. Based on the qualitative data a patient reported outcome measure (questionnaire) that assesses patient empowerment and processes supporting patient empowerment will be developed. This patient reported outcome measure will be used in a nationwide survey of patient empowerment among cancer patients attending a follow-up program in Denmark. Finally, recommendations for how to support and enhance patient empowerment for this group of people will be developed. Patients, who have received cancer treatment themselves, will take part in the project steering group, be co-researchers and conduct interviews. As such, this is a patient and public involvement study (PPI). It is particularly relevant to make this study a PPI study as we hereby embed patient empowerment in both content and design.
Project group
Anna Thit Johnsen, Associate Professor, University of Southern Denmark;
Clara Rübner Jørgensen, anthropologist, PhD, University of Birmingham, UK;
Nanna Bjerg Eskildsen, anthropologist, University of Southern Denmark;
Susanne S.Pedersen, Professor, University of Southern Denmark;
Thora Grothe Thomsen, Associate Professor, University of Southern Denmark and Zealand University Hospital;
Susanne Malchau Dietz, formerly Associate Professor at the University of Aarhus;
Lone Ross, MD, PhD, Department of Palliative Medicine, Bispebjerg Hospital;
Mogens Grønvold, Professor, Department of Palliative Medicine, Bispebjerg Hospital
Publications
Jørgensen, C. R., Eskildsen, N. B., Thomsen, T. G., Nielsen, I. D., & Johnsen, A. T. (2018). The impact of using peer interviewers in a study of patient empowerment amongst people in cancer follow-up. Health Expectations. DOI: 10.1111/hex.12655;
Jørgensen, C. R., Eskildsen, N. B., & Johnsen, A. T. (2018). User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice. Research Involvement and Engagement, 4, 26. DOI: 10.1186/s40900-018-0105-3;
Jørgensen, C. R., Thomsen, T. G., Ross, L., Dietz, S. M., Therkildsen, S., Groenvold, M., & Johnsen, A. T. (2018). What Facilitates "Patient Empowerment" in Cancer Patients During Follow-Up: A Qualitative Systematic Review of the Literature. Qualitative Health Research, 28(2), 292-304. DOI: 10.1177/1049732317721477;
Johnsen, A. T., Eskildsen, N. B., Thomsen, T. G., Groenvold, M., Ross, L., & Joergensen, C. R. (2017). Conceptualizing patient empowerment in cancer follow-up by combining theory and qualitative data. Acta Oncologica, 56(2), 232-238. DOI: 10.1080/0284186X.2016.1267403;
Eskildsen, N. B., Joergensen, C. R., Thomsen, T. G., Ross, L., Dietz, S. M., Groenvold, M., & Johnsen, A. T. (2017). Patient empowerment: a systematic review of questionnaires measuring empowerment in cancer patients. Acta Oncologica, 56(2), 156-165. DOI: 10.1080/0284186X.2016.1267402