Defining Coordinated Care for People with Rare Conditions: A Scoping Review

Abstract

Introduction: To coordinate care effectively for rare conditions, we need to understand what coordinated care means. This review aimed to define coordinated care and identify components of coordinated care within the context of rare diseases; by drawing on evidence from chronic conditions. Methods: A systematic scoping review. We included reviews that reported or defined and outlined components of coordinated care for chronic or rare conditions. Thematic analysis was used to develop a definition and identify components or care coordination. Stakeholder consultations (three focus groups with patients, carers and healthcare professionals with experience of rare conditions) were held to further explore the relevance of review findings for rare conditions. Results: We included 154 reviews (n = 139 specific to common chronic conditions, n = 3 specific to rare conditions, n = 12 both common/rare conditions). A definition of coordination was developed. Components were identified and categorised by those that: may need to be coordinated, inform how to coordinate care, have multiple roles, or that contextualise coordination. Conclusions: Coordinated care is multi-faceted and has both generic and context-specific components. Findings outline many ways in which care may be coordinated for both rare and common chronic conditions. Findings can help to develop and eventually test different ways of coordinating care for people with rare and common chronic conditions.

How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study

“…Participants included both patients affected by rare diseases (7) and carers (8). 1 Carers were all informal carers (they were not carers by profession-they were either the parent of a child with a rare disease or the spouse/…”

“…Following a recent review of definitions [ 1 ], care coordination for chronic and rare conditions has been defined as follows: [p. 8] Coordination of care involves working together across multiple components and processes of care to enable everyone involved in a patient’s care (including a team of healthcare professionals, the patient and/or carer and their family) to avoid duplication and achieve shared outcomes, throughout a person’s whole life, across all parts of the health and care system. Coordination of care should be family-centred, holistic (including a patient’s medical, psychosocial, educational and vocational needs), evidence-based, with equal access to coordinated care irrespective of diagnosis, patient circumstances and geographical location.…”

“…Research has indicated that coordinating care for rare conditions may be more complex than it is for common chronic conditions, for example, coordination may be required in the context of no diagnosis and/or a lack of awareness and expertise in the condition [ 1 ]. An individual’s health needs are often shared over clinical subspecialties [ 9 ] and they are also likely to require coordination across a range of other support needs and professionals (including social care and education) [ 1 ].…”

“…So, while care coordination is considered important for patients with rare conditions, there is a lack of research which addresses care coordination in the context of rare conditions [ 1 ]. More specifically, there is a dearth of evidence on the impact of different approaches to care coordination for such patient groups [ 14 ] including the impact on patients and their families [ 2 , 3 ].…”

Access to patient oriented information—a baseline Endo-ERN survey among patients with rare endocrine disorders

“…Timely and quality information and education is important for patient empowerment [ 5 ], and coping with the sense of social isolation receiving a rare diagnosis is crucial for better outcome [ 6 ]. PAG representatives promote knowledge generation (research and education) most successfully through partnership models [ 7 ] thus facilitating acceleration of quality improvement of RD healthcare.…”