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

Simpson, Andrew; Bloom, Lara; Fulop, Naomi; Hudson, Emma; Leeson-Beevers, Kerry; Morris, Stephen; Ramsay, A. Melvin; Sutcliffe, Alastair; Walton, Holly; Hunter, Amy

doi:10.1186/s13023-020-01664-6

Cited by 34 publications

(51 citation statements)

References 14 publications

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“…Our findings on the organisation of professionals for rare conditions supports previous research that indicates the importance of collaboration and MDTs for rare conditions [12,39] and other conditions [40]. Findings also support previous research which indicates a need to join up care appointments from different disciplines and hospitals into one appointment (e.g., condition-specific clinics), in order to facilitate coordination [12,13]. However, findings indicate that collaboration does not always happen in practice and that improvements in collaboration/joined-up working are needed.…”

Section: Discussionsupporting

confidence: 90%

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

Walton

Simpson

Ramsay

et al. 2021

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BackgroundImproving 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.MethodsThis 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).ResultsOur taxonomy has six domains, each with different options. The six domains are: 1) Ways of organising care (local, hybrid, national), 2) Ways of organising professionals involved in care (collaboration between many or all professionals, collaboration between some professionals, 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).ConclusionsFindings 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.

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Section: Discussionsupporting

confidence: 90%

“…This study is part of a larger mixed-methods research project which aims to explore coordination of care for people living with rare conditions [21]. This study builds on previous aspects of this study [12, 13.…”

Section: Methodsmentioning

confidence: 99%

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

Walton

Simpson

Ramsay

et al. 2021

Preprint

Self Cite

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“…Care coordinators are not new and have previously been widely implemented for adults and children with chronic conditions and mental health conditions in other countries and in the UK [26–30]. The finding that patients/carers are sometimes unable to, or do not want to, coordinate their own care is consistent with previous research that has indicated the negative impact coordinating care can have on patients and families [7,31] and of the treatment burden more generally [1,16].…”

Section: Discussionsupporting

confidence: 77%

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

Walton

Simpson

Ramsay

et al. 2021

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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: i) explore what types of care coordination may be appropriate in different situations, and ii) 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.

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“…In line with previous research, our respondents outlined how challenging it could be to coordinate care (22)(23)(24)(25).…”

Section: Discussionsupporting

confidence: 63%

Rare Disease Healthcare Experience: Qualitative Survey and Workshop Findings in the Context of UK Policy Development

Jones¹,

Simpson²,

Meade³

et al. 2021

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Background: the UK Rare Diseases Framework is the latest policy initiative that aims to improve healthcare for rare diseases in the UK, with four priorities focussed on faster diagnosis, increasing awareness among healthcare professionals, better care coordination and improved access to specialist care and treatment. A survey of over 1,000 people living with rare diseases in the UK immediately prior to the publication of the Framework captured quantitative and qualitative data about their experiences. The qualitative analysis is presented here and compared with the content of the Framework.Results: People living with a rare condition in the UK continue to have very mixed experiences of healthcare and our findings illustrate substantial continuing unmet needs that fall under each of the four priorities of the Framework. Conclusions: Comparing the findings with what is emphasised in the Framework suggests specific key changes to policy and practice which might be missed by action plans developed under the Framework. The overall provision in the UK for people living with rare conditions needs to be improved and regularly reviewed, to ensure they are not being unfairly excluded from appropriate diagnosis, treatment or support.

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

Cited by 34 publications

References 14 publications

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

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

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

Rare Disease Healthcare Experience: Qualitative Survey and Workshop Findings in the Context of UK Policy Development

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