Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

Walton, Holly; Ng, Pei Li; Simpson, Amy; Bloom, Lara; Chitty, Lyn S.; Fulop, Naomi J.; Hunter, Amy; Jones, Jennifer; Kai, Joe; Kerecuk, Larissa; Kokocinska, Maria; Leeson-Beevers, Kerry; Parkes, Sharon; Ramsay, Angus I. G.; Sutcliffe, Alastair; Taylor, Christine; Morris, Stephen

doi:10.1186/s13023-023-02934-9

Orphanet Journal of Rare Diseases

Table 7 Healthcare professionals’ reported level of access to three elements of care coordination (care coordinators, specialist centres, care plans)

From: Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

Element of care coordination	Question	Response	Number (n = 251)	%
Care coordinator	Do the majority of your patients have a formal care coordinator?	Yes	82	35
		No	118	51
		Unsure	33	14
		Total	233	100
		Missing	18
	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 formal care coordinator available)	Yes	15	19
		No	61	75
		Unsure	5	6
		Total	81	100
		Not applicable	151
		Missing	19
	What is the formal care coordinator’s main role? (if care coordinator role is part of another role)	Hospital doctor	16	26
		GP	6	10
		Specialist nurse	19	31
		Other	6	10
		Practice or community nurse	0	0
		Community paediatrician	13	21
		Palliative Care specialist	0	0
		Charity or patient support group representative	0	0
		Physiotherapist	0	0
		Genetic counsellor	1	2
		Total	61	100
		Not applicable	171
		Missing	19
	Which items are managed by the formal care coordinator?	Liaising between healthcare professionals	75	75
		Scheduling appointments	41	41
		Contact for emergency or acute episodes	42	42
		Updating care plan	55	55
		Ensuring availability of health records at appointments	34	34
		Liaising with patient to coordinate multi-disciplinary clinics	48	48
		Advocating on patient’s behalf	63	63
		Out of hours contact	21	21
		Coordinating transitions of care	60	60
		Liaising between health and non-healthcare professionals (e.g. social worker, homecare)	69	69
		Arranging respite care	36	36
		Total	100
		Not applicable	151
	What are the main factors that determine whether someone with a rare condition will have access to a formal care coordinator?	Complexity of disease	124	49
		Availability of care coordinators	124	49
		Extent of patient’s need for support	113	45
		Budgetary constraints	87	35
		Request of patient / carer / family	80	32
		Caseload of healthcare professionals involved	76	30
		Patient’s existing support system (number and role of carers)	67	27
		Distance from specialist centre	57	23
		Unsure	29	12
		Total	251	100
Specialist centres	Is there a specialist centre available for the majority of your patients with rare conditions?	Yes	122	60
		No	61	30
		Unsure	22	11
		Total	205	100
		Missing	46
	Which healthcare professionals are seen at the specialist centre? (if specialist centre available)	Doctors who are expert in rare or undiagnosed conditions	94	64
		Specialist nurse	98	67
		Doctors who are expert in aspects of health affected (e.g. neurologist)	94	64
		Physiotherapist	65	44
		Psychologist	67	46
		Dietician	66	45
		Genetic counsellor	76	52
		Occupational therapist	55	37
		Care coordinator	29	20
		Behavioural therapist	13	9
		Community paediatrician	22	15
		Speech and language therapist	55	37
		Other	30	20
		Total	147
	Which services are provided by the specialist centre?	Appointments with an expert in rare conditions	92	63
		Appointments to see different types of healthcare professionals at the centre	92	63
		Multiple appointments during a single visit	75	51
		Diagnostic and screening procedures	89	61
		Access to patient support groups or charities	86	59
		Access to research opportunities	92	63
		Contact for acute or emergency episodes	63	43
		Non-urgent, out-of-hours contact	35	24
		Appointments which are not in-person (e.g. virtual or telephone appointments)	61	42
		Support during emergency admissions	62	42
		Support with routine admissions	53	36
		Appointments to see non-healthcare professionals (e.g. social worker)	34	23
		Extended hours for appointments	14	10
		Other	5	3
		Total	147
	What are the main reasons why patients with rare conditions might choose not to use specialist centres?	Distance to travel to specialist centre	179	71
		Cost of travel to specialist centre	166	66
		Physical difficulty in travelling to specialist centre	159	63
		Patient is satisfied with quality of care provided locally	87	35
		Length of time between appointments at specialist centre	81	32
		Perceived lack of benefit from the specialist centre	60	24
		Length of appointment times at specialist centre	41	16
		Other	39	16
		Total	251
Care plans	Do you use care plans as a means to document care for patients with rare conditions?	Yes	82	40
		No	105	51
		Unsure	20	10
		Total	207
		Not stated	44
	Who is primarily responsible for keeping the care plan up-to-date?	The patient	4	5
		Hospital doctor	7	9
		Shared responsibility between professionals	20	25
		No one holds responsibility	5	6
		Specialist nurse	17	21
		Formal care coordinator	6	7
		GP	2	2
		Genetic counsellor	0	0
		The carer	0	0
		Practice or community nurse	1	1
		Community paediatrician	5	6
		Other	14	17
		Total	81	100
		Not applicable	125
		Missing	45
	What are the 3 most useful items that should be included in a care plan?	An assessment of current health needs	149	59
		General information and a medical summary	155	62
		Plan of care for emergency or acute episodes	161	64
		Scheduled reviews of the care plan	19	8
		Out of office hours (non-urgent) contacts	32	13
		An assessment of current non-health needs (e.g. social care)	51	20
		Documented health goals	24	10
		Transition planning for changes in care	24	10

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ISSN: 1750-1172

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