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

Abstract

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.

Continuity and care coordination of primary health care: a scoping review

“…Provider-related successful strategies of linking services in care coordination included increased frequency of appointments (regular, on demand, hybrid), access to records (full or filtered access), modes of care (face-to-face, digital, telephone), counselling (telephone, web-based), and practices of care [ 30 , 62 ]. Additionally, self-management/self-care by service users enhanced care coordination of a range of services [ 25 , 37 ].…”

Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey

“…In the survey, less than a third (30%) felt their care was effectively coordinated. Those living with a rare condition as well as carers (many of whom were parents) have outlined previously how challenging it can be to coordinate care [ 45 , 47 – 51 ]. Our findings highlight that having a dedicated care coordinator could improve the overall care experience for those with rare conditions.…”

Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review

“…), so the coordination of the different services involved is also required [ 60 ]. However, few studies emphasize the inadequacy of integrated care practices as a key element in improving the family’s quality of life when the adolescent suffers from an RD [ 14 , 61 ]. This mixed systematic review used the ecological model of health in order to identify the barriers and facilitators to optimal healthcare provision as perceived by adolescents with RDs and their parents.…”

“…The third model, that of care coordination, although considered by stakeholders as the best option for RDs, has rarely been implemented and has been pilot tested mainly in adult and mental health patients [ 78 ]. Few studies have developed taxonomy of care coordination for RDs [ 61 , 77 ] and a small number of actual family-based intervention programs are still not evaluated for their impact on patients’ welfare [ 79 ].…”