Estimating health state utilities in primary hyperoxaluria type 1: a valuation study

Figures & data

Table 1. Health states and their corresponding PH1 stage are classified by CKD stage and kidney function.

PH1 stage^a	Adult health state	Child health state (∼6 years)
CKD stage 1 (GFR ≥90): normal or high kidney function	A1	C1
CKD stage 2 (GFR 60–89): mildly decreased kidney function	A1	C1
CKD stage 3a (GFR 45–59): mildly to moderately decreased kidney function	A2	C1
CKD stage 3b (GFR 30–44): moderately to severely decreased kidney function	A3	C1
CKD stage 4 (GFR 15–29): severely decreased kidney function	A4	C2
CKD stage 5 (ESKD; GFR <15): kidney failure	A5	C3
CLKT: ≥12 months post-transplant	A6	C4

CKD: chronic kidney disease; CLKT: combined liver and kidney transplant; ESKD: end-stage kidney disease; GFR: glomerular filtration rate.

GFR expressed in mL/min/1.73m².

^a PH1 stage classification by CKD stage and function based on the literature and clinical expert opinion.

Table 2. Sociodemographic participant characteristics (N = 100).

	UK sample (N = 100)	UK population^a
Age
Mean (SD)	41.07 (16.73)
Range	18.00–84.00
Median	41.00	39.4^a
Sex
Male	50	49%^a
Female	50	51%^a
Ethnicity
White	82	86%^a
Mixed	9	2%^a
Asian	6	8%^a
Black	2	3%^a
Other	1	1%^a
Occupation
Employed full time	52	–
Employed part time	13	–
Self-employed	8	–
Retired	12	–
Unemployed	1	–
Student	14	–
Has long-term condition
Yes	20	36%^c
Knows someone with metabolic condition^b
Yes	19	–

SD: standard deviation.

^a Figures based on data from the 2011 UK national census³¹.

^b This included relatives/family (partner, child, parent, sibling, other relative) and friends.

^c Figure based on data from the 2013 UK Opinions and Lifestyle Survey (Office for National Statistics)³².

Table 3. Vignette study participants’ self-reported EQ-5D-5L responses on their health (N = 100) compared with normative data.

EQ-5D-5L dimension	N, %	UK population, %^a
Mobility problems	12	18
Self-care problems	1	4
Usual activity problems	8	16
Pain problems	34	33
Anxiety/depression problems	38	21
Overall/any dimension problems	55	43

^a Kind et al.³³.

Table 4. Study participants’ mean self-reported EQ-5D-5L index score and VAS rating of their own health (N = 100).

	Mean (SD)	Range	95% CI
EQ-5D-5L	0.89 (0.11)	0.56–1.00	0.87–0.91
VAS	88.61 (9.80)	45–100	86.69–90.53

CI: confidence interval; SD: standard deviation.

Table 5. EQ-5D-5L scores, VAS scores, and TTO weights of adult and child health state vignettes and their corresponding PH1 stage (N = 100).

Health state	PH1 stage	EQ-5D-5L, mean (SD)	VAS, mean (SD)	TTO, mean (SD)
Adult vignettes
A1	CKD 1–2	0.68 (0.10)	75.02 (10.73)	0.88 (0.11)
A2	CKD 3a	0.63 (0.13)	71.26 (12.53)	0.86 (0.14)
A3	CKD 3b	0.57 (0.17)	67.69 (13.56)	0.80 (0.17)
A4	CKD 4	0.33 (0.23)	49.32 (16.12)	0.51 (0.41)
A5	CKD 5—end-stage kidney disease	0.02 (0.23)	38.38 (17.66)	0.39 (0.42)
A6	Post combined liver and kidney transplant	0.68 (0.12)	65.22 (14.69)	0.77 (0.26)
Child vignettes
C1	CKD 1–3b	0.59 (0.13)	64.36 (14.62)	0.76 (0.17)
C2	CKD 4	−0.02 (0.24)	37.60 (17.84)	0.34 (0.44)
C3	CKD 5—end-stage kidney disease	−0.05 (0.23)	35.97 (17.40)	0.33 (0.41)
C4	Post-combined liver and kidney transplant	0.80 (0.11)	73.35 (13.54)	0.86 (0.13)

CKD: chronic kidney disease; PH1: primary hyperoxaluria type 1; SD: standard deviation.

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