Element of care coordination | Question | Response | Patients (n = 760) | Parents/carers (n = 446) | ||
---|---|---|---|---|---|---|
Number | % | Number | % | |||
Care coordinators | Do you (patients)/the person you care for (parents/carers) have a formal care coordinator? | Yes | 92 | 12 | 62 | 14 |
No | 570 | 77 | 325 | 76 | ||
Unsure | 76 | 10 | 43 | 10 | ||
Total | 738 | 100 | 430 | 100 | ||
Missing | 22 | 16 | ||||
Is the formal care coordinator employed specifically for the role (or do they coordinate care as part of another role, e.g., GP, specialist nurse?) (if patients/parents or carers have a formal care coordinator) | Yes | 33 | 36 | 19 | 31 | |
No | 51 | 56 | 38 | 61 | ||
Unsure | 7 | 8 | 5 | 8 | ||
Total | 91 | 100 | 62 | 100 | ||
Not applicable | 646 | 368 | ||||
Missing | 23 | 16 | ||||
What is the formal care coordinator’s role? (if formal care coordinators role is part of another role) | Hospital doctor | 25 | 49 | 9 | 24 | |
GP | 14 | 27 | 5 | 13 | ||
Specialist nurse | 7 | 14 | 9 | 24 | ||
Other | 3 | 6 | 5 | 13 | ||
Practice or community nurse | 2 | 4 | 3 | 8 | ||
Community paediatrician | 0 | 0 | 3 | 8 | ||
Palliative Care specialist | 0 | 0 | 2 | 5 | ||
Charity or patient support group representative | 0 | 0 | 1 | 3 | ||
Physiotherapist | 0 | 0 | 1 | 3 | ||
Genetic counsellor | 0 | 0 | 0 | 0 | ||
Total | 51 | 100 | 38 | 100 | ||
Not applicable | 686 | 392 | ||||
Missing | 23 | 16 | ||||
Which items are managed by the formal care coordinator? (if applicable) | Liaising between healthcare professionals | 69 | 75 | 45 | 73 | |
Scheduling appointments | 56 | 64 | 23 | 37 | ||
Contact for emergency or acute episodes | 35 | 38 | 21 | 34 | ||
Updating care plan | 32 | 35 | 23 | 37 | ||
Ensuring availability of health records at appointments | 25 | 27 | 8 | 13 | ||
Liaising with patient to coordinate multi-disciplinary clinics | 21 | 23 | 18 | 29 | ||
Advocating on patient’s behalf | 16 | 17 | 19 | 31 | ||
Out of hours contact | 16 | 17 | 3 | 5 | ||
Coordinating transitions of care | 13 | 14 | 17 | 27 | ||
Liaising between health and non-healthcare professionals (e.g. social worker, homecare) | 11 | 12 | 26 | 42 | ||
Arranging respite care | 1 | 1 | 7 | 11 | ||
Total | 92 | 62 | ||||
Not applicable | 668 | 384 | ||||
Specialist centres | Is there a specialist centre available for you (patients)/the person you care for? (parents/carers)? | Yes | 235 | 39 | 130 | 37 |
No | 250 | 41 | 168 | 48 | ||
Unsure | 119 | 20 | 50 | 14 | ||
Total | 604 | 100 | 348 | 100 | ||
Missing | 156 | 98 | ||||
Do you (patients) or they (parents/carers) attend a specialist centre? (if specialist centre available) | Yes | 196 | 83 | 114 | 88 | |
No | 35 | 15 | 14 | 11 | ||
Unsure | 4 | 2 | 2 | 2 | ||
Total | 235 | 100 | 130 | 100 | ||
Not applicable | 369 | 218 | ||||
Missing | 156 | 98 | ||||
Which healthcare professionals are seen at the specialist centre? (if participants attend specialist centre) | Doctors who are expert in rare or undiagnosed conditions | 166 | 85 | 86 | 75 | |
Specialist nurse | 123 | 63 | 74 | 65 | ||
Doctors who are expert in aspects of health affected (e.g. neurologist) | 111 | 57 | 72 | 63 | ||
Physiotherapist | 32 | 16 | 35 | 31 | ||
Psychologist | 30 | 15 | 29 | 25 | ||
Dietician | 22 | 11 | 36 | 32 | ||
Genetic counsellor | 9 | 5 | 17 | 15 | ||
Occupational therapist | 8 | 4 | 17 | 15 | ||
Care coordinator | 7 | 4 | 10 | 9 | ||
Behavioural therapist | 1 | 1 | 3 | 3 | ||
Community paediatrician | 8 | 7 | ||||
Speech and language therapist | 19 | 17 | ||||
Other | 30 | 15 | 13 | 11 | ||
Total | 196 | 114 | ||||
Which services are provided by the specialist centre? | Appointments with an expert in rare conditions | 170 | 87 | 83 | 73 | |
Appointments to see different types of healthcare professionals at the centre | 118 | 60 | 80 | 70 | ||
Multiple appointments during a single visit | 90 | 46 | 62 | 54 | ||
Diagnostic and screening procedures | 86 | 44 | 53 | 46 | ||
Access to patient support groups or charities | 79 | 40 | 35 | 31 | ||
Access to research opportunities | 69 | 35 | 41 | 36 | ||
Contact for acute or emergency episodes | 52 | 27 | 46 | 40 | ||
Non-urgent, out-of-hours contact | 50 | 26 | 35 | 31 | ||
Appointments which are not in-person (e.g. virtual or telephone appointments) | 44 | 22 | 23 | 20 | ||
Support during emergency admissions | 32 | 16 | 31 | 27 | ||
Support with routine admissions | 31 | 16 | 31 | 27 | ||
Appointments to see non-healthcare professionals (e.g. social worker) | 26 | 13 | 19 | 17 | ||
Extended hours for appointments | 12 | 6 | 7 | 6 | ||
Other | 12 | 6 | 4 | 4 | ||
Total | 196 | 114 | ||||
Care plans | Do you (patients)/the person you care for (parents/carers) have a care plan relating to their rare condition? | Yes | 59 | 10 | 159 | 44 |
No | 478 | 78 | 165 | 46 | ||
Unsure | 76 | 12 | 37 | 10 | ||
Total | 613 | 361 | ||||
Not stated | 147 | 85 | ||||
Who is primarily responsible for keeping the care plan up-to-date? | The patient | 15 | 27 | 1 | 1 | |
Hospital doctor | 15 | 27 | 5 | 3 | ||
Shared responsibility between professionals | 8 | 14 | 19 | 12 | ||
No one holds responsibility | 5 | 9 | 9 | 6 | ||
Specialist nurse | 4 | 7 | 8 | 5 | ||
Formal care coordinator | 2 | 4 | 2 | 1 | ||
GP | 2 | 4 | 0 | 0 | ||
Genetic counsellor | 1 | 2 | 0 | 0 | ||
The carer | 0 | 0 | 59 | 37 | ||
Practice or community nurse | 0 | 0 | 5 | 3 | ||
Community paediatrician | 0 | 0 | 2 | 1 | ||
Other | 4 | 7 | 49 | 31 | ||
Total | 56 | 100 | 159 | 100 | ||
Not applicable | 554 | 202 | ||||
Missing | 150 | 85 | ||||
Were you (patients) or the person you care for (parents/carers) involved in developing the care plan for your needs? | Yes | 36 | 64 | 135 | 85 | |
No | 14 | 25 | 19 | 12 | ||
Unsure | 6 | 11 | 5 | 3 | ||
Total | 56 | 100 | 159 | 100 | ||
Not applicable | 554 | 202 | ||||
Missing | 150 | 85 | ||||
What is addressed in the care plan? | General information and a medical summary | 51 | 91 | 142 | 89 | |
An assessment of current health needs | 39 | 70 | 117 | 74 | ||
Scheduled reviews of the care plan | 20 | 36 | 65 | 41 | ||
Plan of care for emergency or acute episodes | 19 | 34 | 77 | 48 | ||
Out of office (non-urgent) contacts | 14 | 25 | 33 | 21 | ||
An assessment of current non-health needs (e.g. social care) | 11 | 20 | 80 | 50 | ||
Documented health goals | 11 | 20 | 45 | 28 | ||
Transition planning for changes in care | 8 | 14 | 19 | 12 | ||
Other | 2 | 4 | 21 | 13 | ||
Total | 56 | 159 | ||||
What are the 3 most useful items that should be included in a care plan? | An assessment of current health needs | 485 | 64 | 273 | 61 | |
General information and a medical summary | 459 | 60 | 259 | 58 | ||
Plan of care for emergency or acute episodes | 459 | 47 | 196 | 44 | ||
Scheduled reviews of the care plan | 173 | 23 | 79 | 18 | ||
Out of office hours (non-urgent) contacts | 108 | 14 | 51 | 11 | ||
An assessment of current non-health needs (e.g. social care) | 97 | 13 | 108 | 24 | ||
Documented health goals | 94 | 12 | 51 | 11 | ||
Transition planning for changes in care | 46 | 6 | 45 | 10 |