Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey

Table 3 Variables included in the best-fit model for overall care experience

Variable	Category	Estimate	Standard Error	p
Intercept		0.81	0.17	< .001
Trust and confidence in Hospital staff	Strongly disagree (reference)
	Disagree	0.21	0.14	0.14
	Neither agree nor disagree	0.44	0.16	0.01
	Agree	0.69	0.15	< .001
	Strongly agree	0.85	0.16	< .001
Satisfaction with information provided by healthcare professionals—following diagnosis	Very unsatisfied (reference)
	Unsatisfied	0.15	0.13	0.24
	Neither satisfied nor unsatisfied	0.30	0.14	0.03
	Satisfied	0.49	0.14	< .001
	Very satisfied	0.73	0.15	< .001
The professionals providing care work as a team	Strongly disagree (reference)
	Disagree	0.13	0.12	0.26
	Neither agree nor disagree	0.09	0.13	0.52
	Agree	0.32	0.15	0.03
	Strongly agree	0.70	0.19	< .001
The timing and frequency of appointments are convenient for the patient/carer/family	Strongly disagree (reference)
	Disagree	0.06	0.13	0.66
	Neither agree nor disagree	0.16	0.13	0.23
	Agree	0.35	0.14	0.01
	Strongly agree	0.46	0.18	0.01
Experience of searching for a diagnosis	1—I feel/felt abandoned by the NHS (reference)
	2	0.31	0.12	0.01
	3	0.54	0.11	< .001
	4	0.41	0.13	< .005
	5—The NHS never gave up/has not given up	0.56	0.11	< .001
Knowledge of whether there is a specialist centre for the condition	No (reference)
	Yes	0.28	0.09	< .005
	Unsure	0.19	0.11	0.08
Number of different clinics attend for the condition	None (reference)
	1–2	−0.02	0.13	0.89
	3–4	−0.05	0.14	0.75
	5 +	0.33	0.15	0.02
Feel care is coordinated effectively	No (reference)
	Yes	0.29	0.12	0.01
Is there a specific healthcare professional to ask questions about the rare condition?	No (reference)
	Yes	0.31	0.09	< .001

ISSN: 1750-1172