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. 2017 Aug 15;19(8):e288.
doi: 10.2196/jmir.7079.

"Am I normal?" The Wishes of Patients With Lymphoma to Compare Their Patient-Reported Outcomes With Those of Their Peers

Simone Oerlemans #  1 , Lindy P Arts  1 , Nicole J Horevoorts  1   2 , Lonneke V van de Poll-Franse  1   2   3
Affiliations

"Am I normal?" The Wishes of Patients With Lymphoma to Compare Their Patient-Reported Outcomes With Those of Their Peers

Simone Oerlemans et al. J Med Internet Res. .

Abstract

Background: Providing feedback to patients on their patient-reported outcomes (PROs) can help patients in monitoring their functioning and symptoms and may help empower them.

Objective: The objective of this study was to investigate whether patients with lymphoma wished to receive PRO feedback, including the option to compare their scores with those of their peers, and how this feedback was evaluated.

Methods: We invited 64 patients participating in a lymphoma cohort who were eligible for a follow-up questionnaire and gave them the option to receive PRO feedback. Patients completed questions about health-related quality of life (HRQoL) and symptoms. PRO feedback was provided via bar charts.

Results: Of the 64 invited patients, 45 participated (response rate 70%) and 36 of those (80%) wished to receive PRO feedback. The vast majority (34/36, 94%) compared their scores with those of a lymphoma reference cohort, and 64% (23/36) compared their score with those of a normative population without cancer. All patients wished to receive feedback on their HRQoL, and 29 (81%) to 33 (92%) wanted feedback on their functioning, fatigue, neuropathy, anxiety, and depressive symptoms. Of the 36 participants wishing to receive PRO feedback, 35 (97%) viewed it as being useful, with reassurance and knowledge about their own functioning in relation to what is "normal" being the most frequently mentioned reasons.

Conclusions: A high number of patients with lymphoma wished to receive PRO feedback. Patients reported the comparison of their scores versus a lymphoma reference cohort as most valuable. Further research should investigate whether PRO feedback could increase empowerment and possibly improve HRQoL.

Keywords: access to information; health-related quality of life; lymphoma; personalized feedback; population-based research; self-care.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
The example of cognitive functioning as part of patient-reported outcome feedback provided to participants.
See this image and copyright information in PMC

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