A roadmap to assess patient experience with person-centered integrated care: when, what and how?

Introduction: Person-centered integrated care (PC-IC) is a concept combining person-centeredness and integrated care to better improve care for people with complex health and social needs. The World Health Organization describes PC-IC as “health services that are managed and delivered in a way so that patients receive both preventive and curative services according to their needs over time that is coordinated across different levels of the health system”. Following this definition, evaluation of PC-IC should include the patients’ experiences with their care. When attempting to assess patient experience (PE) with PC-IC there is a lack of guidance on what to measure, when and how. Our study fills this gap by proposing a roadmap to guide the assessment of PE with PC-IC.

Methods: We reviewed peer-reviewed and grey literature that looked at PE with PC-IC by searching Medline and CINAHL and consulting with experts on seminal work in the field. We included theoretical papers and tools that were used to assess PE in an PC-IC setting. We then synthesized this literature to answer: “what”, “when,” and “how” to assess PE with PC-IC.

Results: We found that PE with PC-IC depends on two main factors. The first is related to social and demographic characteristics. These characteristics influence PE through two mechanisms; patient goals and expectations. The second factor is related to the organizations that provide PC-IC including culture, norms, resources, type and number of partnering organizations. Organizational factors affect PE by shaping the processes of care which affects PE through various mechanisms as communication, continuity of care, shared-decision making and patient- involvement. We also concluded that PC-IC should be looked at as a process rather than an event in the patient’s trajectory and thus assessment of PE with PC-IC should be process-based not event-based. Additionally, PE with PC-IC is a dynamic outcome that can change over time and measuring it continuously would be the preferred approach. Finally, combining qualitative and quantitative approaches gives the best understanding of PE. Our results will serve as a roadmap for PC-IC designers, implementers, and evaluators on how to assess patient experience.

Discussions: Existing tools for measuring PE with PC-IC are often missing the main factors identified in our review. For example, most tools focus on the event of care (e.g. “during your last visit” rather than the process e.g. “organizing your care”. Also, they rarely include patients' social characteristics . Additionally, these tools rarely assess achieving patient goals rather than organizational or system goals.

Conclusions: We created a roadmap that can guide building and evaluating tools used to assess PE with PC-IC.

Lessons learned: For assessing PE with PC-IC to be successful, the tools used should be built on a comprehensive conceptualization of PC-IC, be conducted at the right time and use the appropriate methods.

Limitations: We may have missed important studies or tools that were not identified by our search

Future research: Future work can use this roadmap to construct a framework that can be used to create and evaluate tools that assess PE with PC-IC.