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

Table 6 Preferences for activities managed by the patient/carer or formal care coordinator

Question	Response	Patients (n = 654)^a				Parents/carers (n = 391)^b				Healthcare professionals (n = 208)^c
		Preference to be managed by Patient/carer		Preference to be managed by Formal care coordinator		Preference to be managed by Patient/ carer		Preference to be managed by Formal care coordinator		Preference to be managed by Patient/ carer		Preference to be managed by Formal care coordinator
		Number	%	Number	%	Number	%	Number	%	Number	%	Number	%
Which items would you prefer to be managed by the patient/carer or formal care coordinator?	Scheduling appointments	413	63	241	37	284	75	107	25	120	58	88	42
	Liaising between healthcare professionals	133	20	521	80	76	19	315	81	9	4	199	96
	Liaising between health and non-healthcare professionals (e.g. social worker, homecare)	178	27	476	73	129	33	262	67	21	10	187	90
	Updating care plan	166	25	488	75	137	35	254	65	27	13	181	87
	Ensuring availability of health records at appointments	121	19	533	81	59	15	332	85	24	12	184	88
	Coordinating transitions of care	107	16	547	84	66	17	325	83	7	3	201	97
	Liaising with patient to coordinate multi-disciplinary clinics	121	19	533	81	93	24	298	76	20	10	188	90
	Arranging respite care	158	24	496	76	146	37	245	63	61	29	147	71

ISSN: 1750-1172