Measuring patient experience of integrated care in multiple sclerosis: development and validation of the Integrated...

People with multiple sclerosis (MS) need to receive health and social care services from a diverse range of provider organizations, which carries risks such as disjointed care, discontinuities, and duplication. Many innovation programmes aim to provide better integrated and person-centred care (IPCC) for people with chronic conditions, including MS. Measuring patient experience is essential to evaluate interventions meant to shift the service model towards coordinated and personalized care. These transformations are central to global strategies for addressing the needs of ageing populations. AISM-Italian MS Association adapted an 8-item questionnaire, ICES-MS, from a set of questions originally designed for chronic patients in general. A total of 1602 persons with MS living in Italy completed the ICES-MS as a part of a broader survey that included other validated questionnaires on disability (Self-EDSS) and quality of life (EQ-5D-3L and EQ-VAS). Participants' responses were also linked with data from a previous AISM survey on 169 Italian Clinical Centres. Structural, construct, criterion, and known-groups validity of ICES-MS were evaluated. The ICES-MS scale is a robust unidimensional measure of patient experience of IPCC in MS, with strong internal consistency and appropriate convergent validity with EQ-5D-3L and EQ-VAS. ICES-MS scores varied as expected by participants' age and disability level. ICES-MS is a valid, succinct scale to measure patient experience of IPCC care in MS in Italy, and its original design suggests value in exploring its use in other chronic conditions and different countries.