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.
Highlights
While several evaluation studies oneffectiveness of integrated care have been conducted in recent years, more insight is deemed necessary into integrated care from the perspective of service users
STUDY DESIGN: A CASE STUDY ON Patient Reported Experience Measure (PREM) USE WITH OLDER PEOPLE The SUSTAIN experience administering the P3CEQ is treated here as a case study of PREM use in older people with complex care needs
To address RQ1, we calculated the proportion of missing values for each P3CEQ item. Where this was higher than 10% [43, 44], we addressed RQ2 by analysing whether not answering the item was related to service user characteristics or administration mode, using multilevel analysis
Summary
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. An increasing number of people with multiple health and social care needs live in their homes and communities until old age. Their complex care needs require multidisciplinary collaboration and coordination between care professionals from different organisations. Evidence for their (cost-)effectiveness is inconsistent [7,8,9,10] This is partly due to diverse and often inappropriate outcome measures. These measures are often generic and health based (e.g. health status, physical functioning, quality of life) [8], failing to capture wellbeing, social participation and patient experience, arguably more appropriate for older people with complex needs [11, 12, 13]. Significant gaps in our ability to evaluate integrated care improvement from a service user’s perspective remain [14]
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