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

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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.

Electronic supplementary material

The online version of this article (10.1186/s41687-018-0067-0) contains supplementary material, which is available to authorized users.

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Most cited references 19

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The applications of PROs in clinical practice: what are they, do they work, and why?

Joanne Greenhalgh (2009)

Precisely defining the different applications of patient-reported outcome measures (PROs) in clinical practice can be difficult. This is because the intervention is complex and varies amongst different studies in terms of the type of PRO used, how the PRO is fed back, and to whom it is fed back. A theory-driven approach is used to describe six different applications of PROs in clinical practice. The evidence for the impact of these applications on the process and outcomes of care are summarised. Possible explanations for the limited impact of PROs on patient management are then discussed and directions for future research are highlighted. The applications of PROs in clinical practice include screening tools, monitoring tools, as a method of promoting patient-centred care, as a decision aid, as a method of facilitating communication amongst multidisciplinary teams (MDTs), and as a means of monitoring the quality of patient care. Evidence from randomised controlled trials suggests that the use of PROs in clinical practice is valuable in improving the discussion and detection of HRQoL problems but has less of an impact on how clinicians manage patient problems or on subsequent patient outcomes. Many of the reasons for this may lie in the ways in which PROs fit (or do not fit) into the routine ways in which patients and clinicians communicate with each other, how clinicians make decisions, and how healthcare as a whole is organised. Future research needs to identify ways in with PROs can be better incorporated into the routine care of patients by combining qualitative and quantitative methods and adopting appropriate trial designs.

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The Control Preferences Scale.

L Degner, J A Sloan, P. Venkatesh (1997)

The Control Preferences Scale (CPS) was developed to measure a construct that emerged from a grounded theory of how treatment decisions are made among people with life-threatening illnesses. The control preferences construct is defined as "the degree of control an individual wants to assume when decisions are being made about medical treatment." The CPS consists of five cards that each portrays a different role in treatment decision-making using a statement and a cartoon. These roles range from the individual making the treatment decisions, through the individual making the decisions jointly with the physician, to the physician making the decisions. The CPS involves subjects in making a series of paired comparisons to provide their total preference order over the five cards. These preference orders are analyzed using unfolding theory to determine the distribution of preferences in different populations and the effect of covariates on consumer preferences. The scale has been tested in a variety of populations, ranging from the general public to highly stressed groups. The CPS has proven to be a clinically relevant, easily administered, valid, and reliable measure of preferred roles in health-care decision-making.

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The experiences of professionals with using information from patient-reported outcome measures to improve the quality of healthcare: a systematic review of qualitative research.

Hilary Browne, Joanne Greenhalgh, Maria Boyce (2014)

To synthesise qualitative studies that investigated the experiences of healthcare professionals with using information from patient-reported outcome measures (PROMs) to improve the quality of care. A qualitative systematic review was conducted by searching PubMed, PsycINFO and CINAHL with no time restrictions. Hand searching was also performed. Eligible studies were evaluated using the Critical Appraisal Skills Programme toolkit for qualitative studies. A thematic synthesis identified common themes across studies. Study characteristics were examined to explain differences in findings. All healthcare settings. Healthcare professionals. Professionals' views of PROMs after receiving PROMs feedback about individual patients or groups of patients. Sixteen studies met the inclusion criteria. Barriers and facilitators to the use of PROMs emerged within four main themes: collecting and incorporating the data (practical), valuing the data (attitudinal), making sense of the data (methodological) and using the data to make changes to patient care (impact). Professionals value PROMs when they are useful for the clinical decision-making process. Practical barriers to the routine use of PROMs are prominent when the correct infrastructure is not in place before commencing data collection and when their use is disruptive to normal work routines. Technology can play a greater role in processing the information in the most efficient manner. Improvements to the interpretability of PROMs should increase their use. Attitudes to the use of PROMs may be improved by engaging professionals in the planning stage of the intervention and by ensuring a high level of transparency around the rationale for data collection. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

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Author and article information

Contributors

Caroline Trillingsgaard Mejdahl:

ORCID: http://orcid.org/0000-0001-7361-6082

004529683629 , carmej@rm.dk

Liv Marit Valen Schougaard: livschou@rm.dk

Niels Henrik Hjollund: Nh.Hjollund@vest.rm.dk

Erik Riiskjær: erik.riiskjaer@stab.rm.dk

Sally Thorne: sally.thorne@nursing.ubc.ca

Kirsten Lomborg: kl@clin.au.dk

Journal

Journal ID (nlm-ta): J Patient Rep Outcomes

Journal ID (iso-abbrev): J Patient Rep Outcomes

Title: Journal of Patient-Reported Outcomes

Publisher: Springer International Publishing (Cham )

ISSN (Electronic): 2509-8020

Publication date (Electronic): 5 September 2018

Publication date PMC-release: 5 September 2018

Publication date Collection: 2017

Volume: 2

Electronic Location Identifier: 38

Affiliations

[1 ]ISNI 0000 0001 1956 2722, GRID grid.7048.b, Department of Public Health, , Aarhus University, ; Bartholins Allé 2, DK-8000 Aarhus, Denmark

[2 ]ISNI 0000 0004 0512 597X, GRID grid.154185.c, The Research Program in Patient Involvement, , Aarhus University Hospital, ; Palle Juul-Jensens Boulevard 99, DK-8200 Aarhus, Denmark

[3 ]ISNI 0000 0001 1956 2722, GRID grid.7048.b, WestChronic, Occupational Medicine, , University Research Clinic, Aarhus University, Herning, ; Gl Landevej 61, DK-7400 Herning, Denmark

[4 ]ISNI 0000 0004 0512 597X, GRID grid.154185.c, Department of Clinical Epidemiology, , Aarhus University Hospital, ; Olof Palmes Allé 43-45. DK-8200 Aarhus N, Aarhus, Denmark

[5 ]GRID grid.425869.4, DEFACTUM, Social & Health Services and Labour Market, Central Denmark Region, ; Olof Palmes Allé 15, DK-8200 Aarhus, Denmark

[6 ]ISNI 0000 0001 2288 9830, GRID grid.17091.3e, University of British Columbia School of Nursing, ; 2211 Wesbrook Mall, Vancouver, BC V6T 2B5 Canada

[7 ]ISNI 0000 0001 1956 2722, GRID grid.7048.b, Department of Clinical Medicine, , Aarhus University, ; Palle Juul-Jensens Boulevard 82, DK-8200 Aarhus, Denmark

Author information

Caroline Trillingsgaard Mejdahl http://orcid.org/0000-0001-7361-6082

Article

Publisher ID: 67

DOI: 10.1186/s41687-018-0067-0

PMC ID: 6125260

PubMed ID: 30238083

SO-VID: 6db81de7-6d9c-42fa-ae2a-9e76d60c6f83

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

History

Date received : 25 March 2018

Date accepted : 20 August 2018

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100004191, Novo Nordisk;

Award ID: NNF16OC0022122

Award Recipient : Caroline Trillingsgaard Mejdahl

Funded by: FundRef http://dx.doi.org/10.13039/100007605, Aarhus Universitet;

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

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Abstract

Background

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Electronic supplementary material

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Most cited references 19

The applications of PROs in clinical practice: what are they, do they work, and why?

The Control Preferences Scale.

The experiences of professionals with using information from patient-reported outcome measures to improve the quality of healthcare: a systematic review of qualitative research.

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Cited by 22

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