Development of models of care coordination for rare conditions: a qualitative study

Orphanet Journal of Rare Diseases

Kerry Leeson-Beevers¹  Maria Kokocinska²  Angus I. G. Ramsay³  Pei Li Ng³  Holly Walton³  Naomi J. Fulop³  Amy Simpson⁴  Joe Kai⁵  Amy Hunter⁶  Jennifer Jones⁶  Lara Bloom⁷  Stephen Morris⁸  Alastair G. Sutcliffe⁹ 

[1] Alstrom Syndrome UK, 4 St Kitts Close, TQ2 7GD, Torquay, Devon, UK;Birmingham Women’s and Children’s NHS Foundation Trust, Birmingham, UK;Department of Applied Health Research, University College London, Gower Street, WC1E 6BT, London, UK;Department of Applied Health Research, University College London, Gower Street, WC1E 6BT, London, UK;Genetic Alliance UK, Creative Works, 7 Blackhorse Lane, E17 6DS, London, UK;Division of Primary Care, Centre for Academic Primary Care, NIHR School for Primary Care Research, University of Nottingham, Floors 13-15, Tower Building, University Park, NG7 2RD, Nottingham, UK;Genetic Alliance UK, Creative Works, 7 Blackhorse Lane, E17 6DS, London, UK;Penn State College of Medicine, Hershey, USA;The Ehlers-Danlos Society, Newyork, USA;Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK;UCL and Great Ormond Street Institute of Child Health, 30 Guilford Street, WC1N 1EH, London, UK;

关键词: Care coordination;    Rare conditions;    Rare diseases;    Qualitative;    Health care organisation;   

DOI  :  10.1186/s13023-022-02190-3

来源: Springer

【 摘 要 】

IntroductionImproving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare conditions. It is not yet known which models of care coordination are appropriate in different situations. This study aimed to: (1) explore what types of care coordination may be appropriate in different situations, and (2) use these findings to develop hypothetical models of care coordination for rare conditions.MethodsTo explore appropriateness of different types of care coordination, we conducted interviews (n = 30), four focus groups (n = 22) and two workshops (n = 27) with patients, carers, healthcare professionals, commissioners, and charity representatives. Participants were asked about preferences, benefits and challenges, and the factors influencing coordination. Thematic analysis was used to develop hypothetical models of care coordination. Models were refined following feedback from workshop participants.ResultsStakeholders prefer models of care that: are nationally centralised or a hybrid of national and local care, involve professionals collaborating to deliver care, have clear roles and responsibilities outlined (including administrative, coordinator, clinical and charity roles), provide access to records and offer flexible appointments (in terms of timing and mode). Many factors influenced coordination, including those relating to the patient (e.g., condition complexity, patient’s location and ability to coordinate their own care), the healthcare professional (e.g., knowledge and time), the healthcare environment (e.g., resources) and societal factors (e.g., availability of funding). We developed and refined ten illustrative hypothetical models of care coordination for rare conditions.ConclusionFindings underline that different models of care coordination may be appropriate in different situations. It is possible to develop models of care coordination which are tailored to the individual in context. Findings may be used to facilitate planning around which models of care coordination may be appropriate in different services or circumstances. Findings may also be used by key stakeholders (e.g. patient organisations, clinicians and service planners) as a decision-making tool.

【 授权许可】

CC BY