Adaptation of the Ambulatory and Home Care Record for collecting palliative care service utilisation data from family carers in the UK: a pilot study

Holdsworth, Laura M.; Gage, Heather; Williams, Peter; Butler, Claire

doi:10.1186/s40814-018-0332-2

Pilot and Feasibility Studies

Table 4 Service use and costs reported by 23 carers, standardised to number of contacts/costs per 28 days

From: Adaptation of the Ambulatory and Home Care Record for collecting palliative care service utilisation data from family carers in the UK: a pilot study

Category	Service	Service use						Costs (£, 2016)
Category	Service	Number with zero	% with zero	Mean	SD	Median	Range	Mean cost (£)	SD cost (£)	Median cost (£)	Cost range (£)
In home	GP visit	11	47.8	.705	1.16	.346	0–4.31	49.89	82.33	24.46	0 to 304.77
	District nurse	10	43.5	3.61	6.44	.66	0–26.96	98.62	175.92	17.99	0 to 736.09
	Hospice nurse	15	65.2	.372	.650	0	0–2.05	10.16	17.71	0	0 to 55.93
	Hospice outreach	21	91.3	.110	.417	0	0–1.93	3.01	11.37	0	0 to 52.72
	Home care	16	69.6	20.48	37.4	0	0–105.5	245.81	448.82	0	0 to 1266.46
	Counsellor	22	95.7	.017	.080	0	0–.38	0.70	3.36	0	0 to 16.11
	Physiotherapist	19	82.6	.373	1.35	0	0–6.41	8.21	29.70	0	0 to 141.01
	Occupational therapist	20	87.0	.095	.302	0	0–1.37	2.09	6.64	0	0 to 30.05
	Nutritionist	21	91.3	.045	.158	0	0–.69	0.99	3.47	0	0 to 15.21
	Chiropodist	21	91.3	.002	.006	0	0–.03	0.07	0.25	0	0 to 1.10
	Ambulance	18	78.3	.143	.344	0	0–1.47	14.16	34.05	0	0 to 145.89
	Home enteral nutrition	22	95.7	.045	.216	0	0–1.04	.99	4.76	0	0 to 22.81
Out of home/hospital^a	GP office visit	18	78.3	.247	.543	0	0–1.75	10.88	23.87	0	0 to 77.00
	Hospital clinic	7	30.4	2.699	4.474	.97	0–20	318.47	527.93	113.93	0 to 2360.00
	Hospice clinic	15	65.2	.536	.809	0	0–2.90	63.27	105.04	0	0 to 341.79
	Clinic (not specified)	20	87.0	.198	.643	0	0–2.95	23.33	75.88	0	0 to 347.79
	Oncologist consultation	18	78.3	.220	.640	0	0–2.95	33.64	97.85	0	0 to 450.95
	Hospice consultant	20	87.0	.205	.606	0	0–2.95	24.15	78.62	0	0 to 347.79
	Hospice nurse	19	82.6	.258	.729	0	0–2.95	3.73	10.57	0	0 to 42.74
	A&E	16	69.6	.273	.643	0	0–2.95	38.40	90.29	0	0 to 414.37
	Hospital nights	14	60.9	1.323	.642	0	0–15.71	490.92	1349.31	0	0 to 5827.41
	Hospice overnights	17	73.9	1.449	3.637	0	0–12.88	537.73	1275.23	0	0 to 4778.48
Medication, supplies (self-paid costs, £)^b	OTC, food supplement	12	52.2	n/a	n/a	n/a	n/a	3.96	8.36	0	0 to 37.58
Medication, supplies (self-paid costs, £)^b	Continence, sheets	16	69.6	n/a	n/a	n/a	n/a	2.41	6.90	0	0 to 32.01
Informal caring (h)	Primary carer	0	0	391.2	228.7	368.7	18.7–672.0	7824	4574	7373	373–13,440
Informal caring (h)	Secondary carer	14	60.9	122.9	104.5	71.9	0–366	2459	2090	1473	0–6720

^aTests: carers reported that seven patients received tests, most frequently blood tests
^bMedication costs do not include prescription medications as all participants received these free (data on what medications were prescribed were not gathered). No cost was provided for many of the supplies that were reported because they were provided free of charge, e.g. mattresses, hospital bed, speech and language supplies, cushions. One person reported purchasing a disabled car for £4000—including this in the calculation raises the mean (SD) to £86.26 (402.2)
OTC over the counter
GP general practitioner

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