Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study.

Autor: Walton H; Department of Applied Health Research, University College London, Gower Street, London, WC1E 6BT, UK. holly.walton@ucl.ac.uk., Simpson A; Department of Applied Health Research, University College London, Gower Street, London, WC1E 6BT, UK.; Genetic Alliance UK, Creative Works, 7 Blackhorse Lane, London, E17 6DS, UK., Ramsay AIG; Department of Applied Health Research, University College London, Gower Street, London, WC1E 6BT, UK., Hudson E; Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK., Hunter A; Genetic Alliance UK, Creative Works, 7 Blackhorse Lane, London, E17 6DS, UK., Jones J; Genetic Alliance UK, Creative Works, 7 Blackhorse Lane, London, E17 6DS, UK., Ng PL; Department of Applied Health Research, University College London, Gower Street, London, WC1E 6BT, UK., Leeson-Beevers K; Alstrom Syndrome UK, 4 St Kitts Close, Torquay, Devon, TQ2 7GD, UK., Bloom L; The Ehlers-Danlos Society and Academic of Patient Engagement and Global Collaboration, Penn State College of Medicine, Hershey, USA., Kai J; Division of Primary Care, School of Medicine, University of Nottingham, Floors 13-15, Tower Building, University Park, Nottingham, NG7 2RD, UK., Kerecuk L; Birmingham Women's and Children's NHS Foundation Trust, NIHR CRN West Midlands, Birmingham, UK., Kokocinska M; Birmingham Women's and Children's NHS Foundation Trust, NIHR CRN West Midlands, Birmingham, UK., Sutcliffe AG; UCL and Great Ormond Street Institute of Child Health, 30 Guilford Street, London, WC1N 1EH, UK., Morris S; Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK., Fulop NJ; Department of Applied Health Research, University College London, Gower Street, London, WC1E 6BT, UK.
Jazyk: angličtina
Zdroj: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2022 Apr 20; Vol. 17 (1), pp. 171. Date of Electronic Publication: 2022 Apr 20.
DOI: 10.1186/s13023-022-02321-w
Abstrakt: Background: Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their care, across different providers and settings). To develop and evaluate strategies to potentially improve care coordination, it is necessary to develop a method for organising different ways of coordinating care for rare conditions. Developing a taxonomy would help to describe different ways of coordinating care and in turn facilitate development and evaluation of pre-existing and new models of care coordination for rare conditions. To the authors' knowledge, no studies have previously developed taxonomies of care coordination for rare conditions. This research aimed to develop and refine a care coordination taxonomy for people with rare conditions.
Methods: This study had a qualitative design and was conducted in the United Kingdom. To develop a taxonomy, six stages of taxonomy development were followed. We conducted interviews (n = 30 health care professionals/charity representatives/commissioners) and focus groups (n = 4 focus groups, 22 patients/carers with rare/ultra-rare/undiagnosed conditions). Interviews and focus groups were audio-recorded with consent, and professionally transcribed. Findings were analysed using thematic analysis. Themes were used to develop a taxonomy, and to identify which types of coordination may work best in which situations. To refine the taxonomy, we conducted two workshops (n = 12 patients and carers group; n = 15 professional stakeholder group).
Results: Our taxonomy has six domains, each with different options. The six domains are: (1) Ways of organising care (local, hybrid, national), (2) Ways of organising those involved in care (collaboration between many or all individuals, collaboration between some individuals, a lack of collaborative approach), (3) Responsibility for coordination (administrative support, formal roles and responsibilities, supportive roles and no responsibility), (4) How often appointments and coordination take place (regular, on demand, hybrid), (5) Access to records (full or filtered access), and (6) Mode of care coordination (face-to-face, digital, telephone).
Conclusions: Findings indicate that there are different ways of coordinating care across the six domains outlined in our taxonomy. This may help to facilitate the development and evaluation of existing and new models of care coordination for people living with rare conditions.
(© 2022. The Author(s).)
Databáze: MEDLINE
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