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Mejdahl CT, Schougaard LMV, Hjollund NH, et al. PRO-based follow-up as a means of self-management support - an interpretive description of the patient perspective. J Patient Rep Outcomes. 2018;2:38doi: 10.1186/s41687-018-0067-0.
Mejdahl, C. T., Schougaard, L. M. V., Hjollund, N. H., Riiskjær, E., Thorne, S., & Lomborg, K. (2017). PRO-based follow-up as a means of self-management support - an interpretive description of the patient perspective. Journal of patient-reported outcomes, 238. https://doi.org/10.1186/s41687-018-0067-0
Mejdahl, Caroline Trillingsgaard, et al. "PRO-based follow-up as a means of self-management support - an interpretive description of the patient perspective." Journal of patient-reported outcomes vol. 2 (2017): 38. doi: https://doi.org/10.1186/s41687-018-0067-0
Mejdahl CT, Schougaard LMV, Hjollund NH, Riiskjær E, Thorne S, Lomborg K. PRO-based follow-up as a means of self-management support - an interpretive description of the patient perspective. J Patient Rep Outcomes. 2018 Sep 05;2:38. doi: 10.1186/s41687-018-0067-0. eCollection 2017. PMID: 30238083; PMCID: PMC6125260.
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J Patient Rep Outcomes. 2018 Sep 05;2:38. doi: 10.1186/s41687-018-0067-0. eCollection 2017.

PRO-based follow-up as a means of self-management support - an interpretive description of the patient perspective.

Journal of patient-reported outcomes

Caroline Trillingsgaard Mejdahl, Liv Marit Valen Schougaard, Niels Henrik Hjollund, Erik Riiskjær, Sally Thorne, Kirsten Lomborg

Affiliations

  1. 1Department of Public Health, Aarhus University, Bartholins Allé 2, DK-8000 Aarhus, Denmark.
  2. 2The Research Program in Patient Involvement, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, DK-8200 Aarhus, Denmark.
  3. 3WestChronic, Occupational Medicine, University Research Clinic, Aarhus University, Herning, Gl Landevej 61, DK-7400 Herning, Denmark.
  4. 4Department of Clinical Epidemiology, Aarhus University Hospital, Olof Palmes Allé 43-45. DK-8200 Aarhus N, Aarhus, Denmark.
  5. 5DEFACTUM, Social & Health Services and Labour Market, Central Denmark Region, Olof Palmes Allé 15, DK-8200 Aarhus, Denmark.
  6. 6University of British Columbia School of Nursing, 2211 Wesbrook Mall, Vancouver, BC V6T 2B5 Canada.
  7. 7Department of Clinical Medicine, Aarhus University, Palle Juul-Jensens Boulevard 82, DK-8200 Aarhus, Denmark.

PMID: 30238083 PMCID: PMC6125260 DOI: 10.1186/s41687-018-0067-0

Abstract

BACKGROUND: There is an increasing focus on the use of patient-reported outcome (PRO) measures to improve the quality and effectiveness of health care. PRO-based follow-up is a new model of service delivery, where the patient's PRO measures are used as the very basis for outpatient follow-up.

OBJECTIVES: This study aimed to explore how patients with epilepsy experience the use of PRO-based follow-up in three outpatient clinics in the Central Denmark Region. We also sought to explain how these experiences relate to self-management.

METHODS: Interpretive description was the methodological approach. We conducted in-depth individual interviews with 29 patients referred to PRO-based follow-up, each of whom had completed at least two PRO questionnaires. Participants were sampled based on purposive and theoretical sampling.

RESULTS: PRO-based follow-up may support patients' self-management by a) increasing awareness of psychosocial problems, b) improving communication, c) increasing understanding of symptoms, d) facilitating change in health behavior and e) strengthening autonomy. Inhibitors for PRO measures as a means of self-management support were identified as a) feelings of rejection and disconnection, b) incomprehension of purpose of PRO-based follow-up, c) PRO measures being too standardized and negative and d) lack of confidence in own ability to assess PRO questionnaires.

CONCLUSION: The findings demonstrate broad variation in the influences of PRO measures on patient's self-management in life with epilepsy. Sense of ownership may explain this variation. We suggest supplementary clinical initiatives in order to enhance the benefits from PRO-based follow-up, particularly on how patients are allocated to this health care service.

Conflict of interest statement

The study was approved by the Danish Data Protection Agency (Identification no. 2015–41-4119). According to Danish law, this kind of qualitative study does not require notification to the Committee on

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