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 5 Patients’ and carers’ reported levels 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	Patients (n = 760)		Parents/carers (n = 446)
Element of care coordination	Question	Response	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

Back to article page

ISSN: 1750-1172

Contact us

Submission enquiries: Access here and click Contact Us
General enquiries: info@biomedcentral.com