Development and validation of a patient-centered outcome measure for young adults with pediatric hip conditions: the “Quality of Life, Concerns and Impact Measure”

Figures & data

Figure 1 Overview of development and validation study design.

Abbreviations: QOL, quality of life; QOLC&I, quality of life concerns and impact; DDH, developmental dysplasia of the hip; SUFE, slipped upper femoral Epiphyses.

Figure 2 Emerging themes and illustrative extracts.

Figure 3 Model specification for the quality of life, concerns, and impact measure.

Table 1 Respondent characteristics^a

Variable	DDH			Perthes			SUFE
Diagnosed condition	72% (n=160)			16% (n=35)			12% (n=26)
Age (years)	(n=155)			(n=32)			(n=26)
● Mean (standard deviation)	30.4 (8.4)			26.2 (6.8)			23.9 (6.5)
● Median (range)	30 (16–45)			25 (16–40)			22 (16–39)
● Aged under 20 n (%)	18 (12%)			6 (19%)			10 (39%)
● Aged 20-<35 n(%)	81(52%)			22 (58%)			14 (54%)
● Aged 35 or over n(%)	56 (36%)			4 (13%)			2 (8%)
Gender	(n=155)			(n=32)			(n=26)
● Male	26 (17%)			24 (75%)			12 (46%)
● Female	129 (83%)			8 (25%)			14 (54%)
Age and gender by diagnosis	(n=155)			(n=32)			(n=26)
Gender	Age <20	Age 20–<35	Age ≥35	Age <20	Age 20–<35	Age ≥35	Age <20	Age 20-<35	Age ≥35
● Male	1	13	12	4	17	3	5	6	1
● Female	17	68	44	2	5	1	5	8	0
Job status:	(n=160)			(n=32)			(n=26)
● Employed (full or part-time)	102 (64%)			22 (69%)			10 (38%)
● Not working due to ill-health	21 (13%)			3 (10%)			3 (12%)
● In education (school or FE)	23 (14%)			5 (16%)			9 (35%)
● Looking after family	9 (6%)			1 (3%)			3 (12%)
● Unemployed	5 (3%)			1 (3%)			1 (4%)
Time to diagnosis (years)	(n=144)			(n=26)			(n=20)
● Mean (SD)	2.6 (5.5)			0.33 (0.33)			1.5 (3.3)
● Median (range)	0.5 (0–33)			0.10 (0.1–1)			0.1 (0–13)
Stage of treatment: left hip	(n=110)			(n=23)			(n=20)
● Deciding on treatment	52 (47%)			11 (48%)			8 (40%)
● Waiting for surgery	23 (21%)			2 (9%)			1 (5%)
● Up to 12 months post-op	20 (18%)			2 (9%)			4 (20%)
● Over 12 months post-op	15 (14%)			8 (35%)			7 (35%)
Stage of treatment: right hip	(n=119)			(n=18)			(n=20)
● Deciding on treatment	49 (41%)			9 (50%)			10 (50%)
● Waiting for surgery	21 (18%)			3 (17%)			1 (5%)
● Up to 12 months post-op	25 (21%)			4 (22%)			4 (20%)
● Over 12 months post-op	24 (20%)			2 (11%)			5 (25%)
Type of surgery: left hip	(n=107)			(n=23)			(n=18)
● Joint conservation	45 (42%)			3 (13%)			5 (28%)
● Triple/femoral osteotomy	9 (8%)			4 (17%)			2 (11%)
● Resurfacing surgery	6 (6%)			4 (17%)			1 (6%)
● Total hip replacement	12 (11%)			4 (17%)			2 (11%)
● Other	5 (5%)			3 (13%)			2 (11%)
● Don’t know	30 (28%)			5 (22%)			6 (33%)
Type of surgery: right hip	(n=123)			(n=18)			(n=17)
● Joint conservation	54 (44%)			5 (28%)			2 (12%)
● Triple/femoral osteotomy	5 (4%)			2 (11%)			0 (0%)
● Resurfacing surgery	3 (2%)			0 (0%)			1 (6%)
● Total hip replacement	19 (15%)			4 (22%)			4 (24%)
● Other	7 (6%)			1 (6%)			2 (12%)
● Don’t know	35 (28%)			6 (33%)			8 (47%)

Notes: ^aThe total number of cases varies due to non-response to particular items, within the total sample size of n=230 (DDH=160; Perthes=35; SUFE=26; PHC not indicated=9).

Table 2 Accessibility, practicality, and data quality (n=230)

Practicality
Practicality	Mean (SD)		Median (range)				Non-Respondents Number (%)
Ease of completion	3.88 (1.06)		4 (3–5)				22 (10.62%)
Time to complete measure (mins)	19.3 (11.91)		15 (10–20)				22 (13.9%)
	Help in discussions		Not help in discussions
Patient perceived usefulness (%)	76%		24%				37 (16%
Acceptability and data quality
	N (%) Missing (scale)		Floor/Ceiling (individual items)				Skewness (No. Items >1)
			No. Items >60%		No. Items >80%
Sub-sub-scales
Pain	28 (12%)		2		0		3
Education & work	9 (4%)		0		0		0
Sport & exercise	125 (54%)		1		0		4
family life	25 (11%)		0		0		0
Physical intimacy	36 (18%)		0		0		0
Social life	88 (38%		0		0		1
Emotion & depession	26 (12%)		0		0		0
Body image	58 (25%)		0		6		0
Confidence & esteem	12 (5%)		0		0		0
Quality of life	45 (20%)		0		0		3
Sub-scales
Pain concerns	28 (12%)		2		0		3
Sport, work, family & social impact	125 (54%)		1		0		5
Psychological impact	58 (25%)		0		0		0
Quality of life impact	45 (20%)		0		0		3
Full scale
Quality of life, concerns and impact	78 (34%)	3 items			0		(11 items)
Scale features
	Mean (SD)	Median		Range		Skewness		No. Items in Scale
Sub-sub-scale
Pain	56.0 (21.3)	61.8		0–80		−1.04		11
Education & work	48.6 (30.2)	50.0		0–100		0.086		3
Sport & exercise	80.0 (24.6)	82.2		0–100		−1.273		6
Family life	52.9 (30.1)	50.0		0–100		−0.133		3
Physical intimacy	53.8 (31-0.8)	58.3		0–100		−0.174		3
Social life	37.4 (27.4)	35.0		0–100		0.489		5
Emotion & depression	59.7 (25.2)	64.3		0–100		−0.462		6
Body image	38.4 (23.2)	34.3		0–80.0		0.173		7
Confidence & esteem	39.1 (26.2)	37.5		0–100		0.198		6
Quality of life	51.0 (21.1)	52.9		0–80		−0.467		14
Sub-scale
Pain concerns	56.0 (21.3)	61.8		0–80		−1.04		11
Sport, work, family & social impact	40.5 (19.1)	43		0–79		−0.256		20
Psychological impact	41.4 (21.7)	41.1		0–80.0		0.031		19
Quality of life impact	51.0	52.9		0–80		−0.47		14
Full scale
Quality of life, Concerns and impact	43.6 (18.4)	43.3		3.4–77.8		−0.166		64

Table 3 Factor analysis - internal consistency and reliability (n=230)

	No. factors	% Explained rotated	Inter-item correlation (range)	Item-total correlation (range)	Cronbach’s alpha	Interclass Correlation (average) (ICC)
Sub-sub-scale
Pain	1	68.5	0.45–0.76	0.62–0.85	,95	0.95
Education & work	1	77.8	0.56–0.77	0.71–0.77	0.86	0.86
Sport & exercise	1	66.6	0.45–0.79	0.61–0.85	0.91	0.89
Family life	1	76.8	0.46–0.72	0.66–0.77	0.85	0.85
Physical intimacy	1	84.2	0.51 – 0.70	0.78–0.84	0.91	0.91
Social life	1	67.1	0.56–0.81	0.66–0.79	0.88	0.88
Emotion & depression	1	69.7	0.64–0.88	0.59–0.89	0.91	0.91
Body image	1	65.2	0.43–0.76	0.68–0.85	0.92	0.92
Confidence & esteem	1	77.3	0.45–0.81	0.67–0.88	0.94	0.94
Quality of life	2	74.5 39% (F1) 35.6% (F2)	0.61–0.88	0.63−0.89	0.97	0.96
Sub-scale
Pain concerns	1	68.5	0.45–0.76	0.62–0.85	,95	0.95
Sport, work, family & social impact	3	68.0 (Total) 23.8% (F1) 22.9% (F2) 21.4% (F3)	0.45–0.81	0.61–0.85	0.95	0.97
Psychological impact	2	68.7 37.2 (FI) 31,5% (F2)	0.43–0.88	0.59–0.89	0.95	0.97
Quality of life impact	2	74.5 39% (F1) 35.6% (F2)	0.61–0.88	0.63−0.89	0.96	0.96
Full scale
Quality of life, concerns and Impact	10	79.5 (Total) 21.2% (F1) 19% (F2) 8.4% (F3) 6.7% (F4) <6.5% (F5-F10)	43–0.89	0.59–0.89.	0.98	0.98

Table 4 Convergent and divergent validity (n=230)

Scale	Mean (SD)	Median	Range	Skewness	No items in scale
GHQ	69.0 (12.4)	70.8	33–100	−0.54	12
iHOT-12	34.7 (23.9)	27.5	0.8–100	1.0	12
GSE	72.2 (16.6)	75.0	25–100	−0.55	10
Contrast measure	Measure component(s)		Pearson’s correlation (p)		Comments
GHQ	Psychological impact		−0.499 (p<0.001)		Moderate
iHOT-12	Quality of life impact		−0.822 (p<001)		High
GSE	Psychological impact		−0.235 (p<0.002)		Low
GSE	Sport, family and social impact		−0.245 (p<0.005)		Low