Measuring Older Peoples' Experiences of Person-Centred Coordinated Care: Experience and Methodological Reflections from Applying a Patient Reported Experience Measure in SUSTAIN

Jillian Reynolds; Erica Gadsby; Mieke Rijken; Annerieke Stoop; Mireia Espallargues; Helen M Lloyd; James Close; Simone de Bruin

doi:10.5334/ijic.5504

Measuring Older Peoples' Experiences of Person-Centred Coordinated Care: Experience and Methodological Reflections from Applying a Patient Reported Experience Measure in SUSTAIN

Int J Integr Care. 2021 Jul 13;21(3):3. doi: 10.5334/ijic.5504. eCollection 2021 Jul-Sep.

Authors

Jillian Reynolds¹, Erica Gadsby², Mieke Rijken^{3

4}, Annerieke Stoop^{5

6

7}, Mireia Espallargues^{1

8}, Helen M Lloyd⁹, James Close¹⁰, Simone de Bruin¹¹

Affiliations

¹ Agency for Health Quality and Assessment of Catalonia (AQuAS), Department of Health of the Catalan Government, Barcelona, Spain.
² Centre for Health Services Studies, University of Kent, Canterbury, UK.
³ Netherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands.
⁴ Department of Health and Social Management, University of Eastern Finland, Kuopio, Finland.
⁵ National Institute for Public Health and the Environment, Bilthoven, The Netherlands.
⁶ Amsterdam Public Health research institute, Amsterdam UMC - VU University Amsterdam, Amsterdam, the Netherlands.
⁷ Scientific Centre for Transformation in Care and Welfare (Tranzo), University of Tilburg, Tilburg, the Netherlands.
⁸ Spanish Health Services Research on Chronic Patients Network (REDISSEC), Barcelona, Spain.
⁹ School of Psychology, University of Plymouth, Plymouth, United Kingdom.
¹⁰ School of Medicine & Dentistry, University of Plymouth, Plymouth, United Kingdom.
¹¹ National Institute for Public Health and the Environment, Centre for Nutrition Prevention and Health Services, Bilthoven, the Netherlands.

Abstract

Introduction: While several evaluation studies on (cost-)effectiveness of integrated care have been conducted in recent years, more insight is deemed necessary into integrated care from the perspective of service users. In the context of a European project on integrated care for older people living at home (SUSTAIN), this paper shares the experience and methodological reflections from applying a Patient Reported Experience Measure (PREM) on person-centred coordinated care -the P3CEQ- among this population.

Methods: A combination of quantitative and qualitative data and analysis methods was used to assess the usability and the quality of applying a PREM among older people presenting complex care needs, using the P3CEQ delivery in SUSTAIN as a case study. 228 service users completed the P3CEQ and nine SUSTAIN researchers participated in a consultation about their experience administering the questionnaire. P3CEQ scores were analysed quantitatively using principal component analysis and multilevel linear regression. P3CEQ open responses and researcher notes collected when administering the questionnaire were thematically analysed.

Results: Service user inclusion was high and most P3CEQ items had low non-response rates. Quantitative analysis and researcher experience indicate the relevance of face-to-face administration for obtaining such an amount of data in this population group. The presence of a carer increased inclusion of more vulnerable respondents, such as the cognitively impaired, but posed a challenge in data interpretation. Although several P3CEQ items were generally understood as intended by questionnaire developers, the analysis of open responses highlights how questions can lead to diverging and sometimes narrow interpretations by respondents. Cognitive impairment and a higher educational attainment were associated with lower levels of perceived person-centredness of care.

Conclusion: This study shows essential preconditions to meaningfully collect and analyse PREM data on older peoples' experiences with integrated care: face-to-face administration away from care providers, collection of reasons for non-response and open comments providing nuances to answers, and multilevel modelling taking into account diversity in the target population. Several areas of improvement for future PREM use in this population have been identified: use of administration and coding guides, inclusion of clear and easy to understand definitions and examples illustrating what questions do and do not mean, measures of the expectations of person-centred coordinated care, and procedures ensuring sound ethical research. These methodological learnings can enhance future evaluation of integrated care from a service user perspective.

Keywords: care coordination; data quality; integrated care; methods; older people; patient reported experience measures; person-centredness.

Grants and funding

The SUSTAIN project was funded under Horizon 2020 – the Framework Programme for Research and Innovation (2014–2020) from the European Union under grant agreement No. 634144. The content of this paper reflects only the authors’ views. The European Union is not liable for any use that may be made of the information contained herein. JC was further supported by the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) South West Peninsula, and the views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.