Table 3 Summary of contextual findings for care coordination options, including preferences, benefits and challenges and factors influencing coordination
From: Development of models of care coordination for rare conditions: a qualitative study
Domain | Participants’ preference for options within domain | Example benefits for options within domain | Example challenges for options within domain | Example factors influencing choice of option within domain | |
|---|---|---|---|---|---|
1. Ways of organising care | Nationally centralised services (e.g. nationally commissioned services) | ✔ Improved coordination ✔ Motivated staff ✔ Holistic ✔ Reduce travel ✔ Expertise | ✖ Not accessible to all ✖ Not suitable for some conditions ✖ Not able to cover all aspects of care | • Patient factors, e.g., condition (complexity, severity and clarity over who patient needs to see), age, diagnosis, location • Healthcare environment, e.g., resources (funding and availability), environment (access and suitability) • Societal factors, e.g., funding and availability of guidelines | |
Hub and spoke, networks and outreach (e.g., specialist coordinating care, local delivering, outreach clinics, support for local providers) | ✔ Education for local providers ✔ Reduce travel ✔ Set standards | ✖ Resources | |||
2.Ways of organising the team | Condition-specific clinics or joint clinics (some to high collaboration) | ✔ Allow teams to figure out who need to see ✔ Reduce travel ✔ Message consistency ✔ Holistic care | ✖ Difficulty organising ✖ Lack of involvement from some disciplines ✖ Tiring clinics (for patients/carers) | • Patient factors, e.g., age and condition (e.g. how many disciplines they need to see) • Provider factors e.g., knowledge/understanding/expertise • Healthcare environment, e.g., resources and availability of clinics | |
Meetings (some to high collaboration) | ✔ Shared conclusion ✔ Message consistency | ✖ Difficulty organising ✖ Time ✖ Lack of sharing or reading information ✖ Meetings without patient—disliked by patients | |||
Transition methods (e.g., half appointment with adult services, half with child services) | ✔ Helping patient take responsibility ✔ Smoother transition ✔ Build confidence | ✖ Differences in adult and child services ✖ Reluctance to transition ✖ Takes time | |||
3. Responsibilities | Point of contact (administrative support) | ✔ Answer queries, ✔ Build rapport | ✖ Time ✖ Not available | • Patient factors, e.g., diagnosis, age, condition, individual needs and preferences • Provider factors e.g., skills and capability, attitudes and opportunity • Healthcare environment, e.g., availability of roles • Societal factors e.g., resources and attitudes | |
Coordinator (formal role) —   a) nurse or allied health professional and b) transition or clinic coordinator | ✔ Organise appointments ✔ Relationships between patient and team ✔ Support patient ✔ Point of contact | ✖ Need time and dedicated role ✖ Lack of coordinators ✖ Need cover | |||
Clinical lead—(formal role)—doctor | ✔ Expertise ✔ Holistic care ✔ Facilitator collaboration |  | |||
GP (formal role)—point of contact, information and referral | ✔ Speed of referral | ✖ Time ✖ Motivation ✖ Referral pathways | |||
Support from charities (supporting coordination, healthcare professionals, clinics and providing materials) | ✔ Administrative support ✔ Push for standards | ✖ Not available for all conditions ✖ Reliant on donations | |||
4. How often | Regular | ✔ Ability to check in and update on care |  | • Patient factors, e.g. diagnosis, age, ability to travel, condition (e.g., stability and severity) • Provider factors e.g. time, knowledge and understanding • Healthcare environment, e.g. availability of roles, time and funding | |
On demand | ✔ Helping to access care when needed ✔ Not wasting providers’ time |  | |||
Pre-determined schedules | ✔ Evidence based ✔ Suitable for condition ✔ Accounts for genetic breakthroughs |  | |||
5. Access | Access to records for providers—full access | ✔ Access to information ✔ Keeping everyone updated—facilitating appropriate provision of care | ✖ Patients not always wanting providers to have access to irrelevant information (e.g., information not relevant to the condition) ✖ Potential for patients to be judged | • Patient factors, e.g., diagnosis, consent and the condition • Healthcare environment, e.g., resources, environmental factors, attitudes • Societal factors, e.g.- funding | |
Access to records for providers—limited/restricted by relevance | ✔ Providers only see the information they need—quicker ✔ Less overwhelming for providers ✔ Patient control over who sees what |  | |||
Access to records for patients | ✔ Beneficial for patients—responsibility over their information/transparency | ✖ Potential for misinterpretation of information if not appropriately presented | |||
Access to out of hours support, holistic care and individualised care | ✔ Able to access care when needed ✔ Saving time ✔ Rapport | ✖ Information not always available in emergencies | |||
6. Mode | Information sharing | Digital—(e.g., online portals, online records, apps, email, databases) | ✔ Easy access to information (portals, records, apps, emails) ✔ Quicker (portals, emails) ✔ Secure (portals, records) ✔ Patient control over access (apps) | ✖ IT failures (portals, records) ✖ Difficulties keeping up to date (portals, databases) ✖ Too much information (records) ✖ Security (apps, emails) | • Patient factors, e.g., age, condition • Healthcare environment, e.g. access to technology |
Written – (e.g., care plans, letters, written agreements, patient held records, condition specific passports) | ✔ Keeping everyone updated (letters, care plans) ✔ Quicker (letters) ✔ On hand when needed (condition specific passports) ✔ Patient ownership (patient held records) ✔ Ensuring accountability (written agreements) | ✖ Lost or delayed (letters) ✖ Not always accepted or used by providers (condition specific passports, care plans) | |||
Care delivery and coordination | Digital (e.g., skype or virtual appointments) | ✔ Reducing travel ✔ Suitable for updating and reviewing and answering questions ✔ Consistent messaging | ✖ Cannot fully replace specialist appointments ✖ Not appropriate for all conditions ✖ Not appropriate for first meeting ✖ Information security | • Patient factors, e.g., age, individual needs and condition | |
Face-to-face | ✔ Physical examination of patients ✔ Problem solving ✔ Relationship building ✔ Support | ✖ Not appropriate for all conditions due to travel ✖ Difficulties organising ✖ Tiring ✖ Time ✖ Funding | |||
Telephone | ✔ Reduces travel ✔ Joint decision-making | ✖ Not suitable for all conditions ✖ Not preferred by patients/carers ✖ Cannot see body language | |||
Combination | ✔ Keeping everyone in the loop ✔ Reducing travel ✔ Saving time and money ✔ Sharing information/consistent messaging |  | |||
Communication | Face-to-face | ✔ Easier to address issues and reduce misunderstandings ✔ Agree plans moving forward | ✖ Lack of capacity to attend |  | |
Digital | ✔ Convenient if face-to-face not possible ✔ Agreeing solutions ✔ Reducing time |  | |||
Telephone | ✔ Suitable for answering queries ✔ Reduces chance of patients getting lost in system | ✖ Not guaranteed a response ✖ Not suitable for all conditions | |||