Development of community participation indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project

Figures & data

Table 1 Community participation outcome measures.

Measurement tool	Number of items	Score or scale	Psychometric properties			Access link
			Construct	Cost	Reliability / Validity
Assessment of Life Habits Scale (LIFE-H)^Citation29	298 (short version: 77)	Mobility items include 18 items (short version LIFE-H); To calculate a single item, score the answers related to the difficulty level and assistance are combined and weighted to derive an accomplishment score.	Life habits and handicap	Must be purchased	Adequate to excellent reliability (ICC from 0.67 to 0.83); Poor to excellent validity (correlation with CHART from 0.14 to 0.89)	here
Craig Handicap Assessment & Reporting Technique (CHART*)^Citation30	32 (short form:19)	Each domain or subscale has a maximum score of 100 points.	Handicap (used as a proxy for participation)	Public Domain	Test re-test reliability: excellent (r = 0.93) for the total score and ranges from adequate to excellent for the domains (moderate: r = 0.53 for Physical Independence to high: r = 1.00 for Economic Self-sufficiency).	here
Craig Hospital Inventory of Environmental Factors (CHIEF)^Citation31	25	Scores are calculated by multiplying each item with the frequency score (range: 0–4) by magnitude (range: 1–2) to yield an overall “impact” score (range: 0–8).	Environment	Public Domain	Excellent test-retest reliability for total CHIEF (ICC = 0.93); Excellent sub-scale test reliability (ICC range = 0.77–.89)	here and here
Community Integration Measure (CIM**)^Citation32	10	Each item is scored on a 5-point Likert scale from 1 (always disagree) to 5 (always agree).	Community Participation	Public Domain	Internal consistency: excellent (Cronbach's alpha = 0.87); Concurrent validity with the CIQ: moderate (r = 0.34);	here and here
Impact of Participation and Autonomy Questionnaire (IPAQ*)^Citation33	39	Each item is scored on a 5-point rating scale from 1 (very good) to 5 (very poor).	Participation	Public Domain	Test-retest reliability: excellent; Convergent Validity: Poor correlation between the IPA domain of autonomy outdoors and the Sickness Impact Profile's physical dimension (r = 0.29); Discriminant Validity: Poor correlation between the IPA Scale domains and the London Handicap Scale domains (r = −0.29–0.01); High ceiling effect.	here
Leisure Time Physical Activity Questionnaire for People with Spinal Cord Injury (LTPAQ-SCI)^Citation34	6	Items with various weights capture activity levels.	General community	Public Domain	Weak to moderate correlation magnitude (r = 0.27–0.54) for intensity scales with intensity within LTPA PARA-SCI scale; ICC = 0.83 (95% CI: 0.69-0.91)	here
Life Satisfaction Questionnaire (LISAT-11)^Citation35	11	Each item is scored on a 6-point scale from 1 (very dissatisfied) to 6 (very satisfied).	Life Satisfaction (Domain Specific)	Public Domain	Adequate internal consistency (Cronbach’s alpha = 0.74)	here
Moorong Self-Efficacy Scale (MSES)^Citation36	16	Each item is scored on a 7-point scale from 1 (very uncertain) to 7 (very certain). The total scale score is obtained by calculating the sum of the individual scores with a range from 16 to 112.	Participation	Public Domain	Excellent internal consistency (Cronbach's alpha = 0.93)	here
The Physical Activity Recall Assessment for People with Spinal Cord injury (PARA-SCI)^Citation37	5 domains	Data are reported as an average number of minutes of activity per day (mild, moderate, heavy, total) for the two dimensions (Leisure-time physical activity or lifestyle activity) and a cumulative index over a 3-day period.	Activity including participation	Public Domain	Intraclass correlations ranged from 0.45 to 0.91; correlations between PARA-SCI scores and indirect calorimetry estimates of activity ranged from 0.27 to 0.88.	here
Physical Activity Scale for Individuals with Physical Disabilities (PASIPD)^Citation38	13 (alternate 11 items)	The average hours per day for each item is multiplied by a metabolic equivalent (MET).	Activity (self-care)	Public Domain	Poor internal consistency (Cronbach's alpha = 0.37–0.65); Poor to excellent Content & Construct validity	here
Person-Perceived Participation in Daily Activities (PDAQ)^Citation39	26	Each item is scored on a 4-point scale from “yes- as much as I want” to “no- I don’t want to do it” Participants describe their participation in DAs in the last 12 months.	Participation	Public Domain	The PDAQ provides a comprehensive assessment of participation without considerable respondent burden.	here
Reintegration to Normal Living Index (RNLI**)^Citation40	11	Each item is scored using a 10 cm visual analogue scale anchored with phrases (0: no reintegration, 10: complete reintegration).	Participation	Public Domain	Excellent internal consistency (Cronbach’s alpha = 0.87); Construct Validity: Excellent correlations between the RNL and Quality of Life Index (QLI) (r = −0.654); Adequate correlation between the RNL and Functional Independence Measure (r = −0.348)	here
Risk Inventory for persons with Spinal Cord Injury (RISCI)^Citation41	12	Each item is scored on a 5-point scale from 0 (not risky at all) to 4 (extremely risky).	Risk Tolerance	Unknown	Excellent internal consistency (Cronbach’s alpha = 0.86)	here
Spinal Cord Independence Measure (SCIM)^Citation42	16 (Mobility: 5)	Each item is scored on a 5-point scale and the total score is the summation of all items.	Activity (outdoor mobility)	Public Domain	Total interrater agreement on the various individual tasks ranged between 72 and 99%; for most of the SCIM tasks, total agreement was higher than 85%, and the Kappa coefficient ranged between 0.66 and 0.98.	here

Figure 1 Community participation Driver diagram. The impairment branch is common to the 11 SCI-high project domains. UEMS: Upper-Extremity Motor Score, LEMS: Lower-Extremity Motor Score, NLI: Neurological Level of Injury, AIS: ASIA Impairment Scale; HR: Heart Rate, BP: Blood Pressure.

Table 2 Selected structure, process and outcome indicators for the community participation domain.

Indicator	Denominator	Type	Time of measurement
Proportion of SCI/D rehabilitation programs with availability of transition living setting/independent living unit	Total number of participating tertiary SCI/D rehabilitation programs	Structure	Annual
Proportion of SCI/D rehabilitation inpatients who had a community outing prior to rehabilitation discharge	Total number of SCI/D patients discharged per FY	Process	Rehabilitation discharge
Proportion of SCI/D rehabilitation inpatients who went on a weekend pass prior to rehabilitation discharge	Total number of SCI/D patients discharged per FY	Process	Rehabilitation discharge
MSES	Total number of SCI/D patients discharged per FY	Outcome – Intermediary	2 weeks prior to rehabilitation discharge
MSES	Total number of SCI/D patients discharged per FY	Outcome – Intermediary	3 months (±1 month) post rehabilitation discharge
RNL	Total number of SCI/D patients discharged per FY	Outcome – Intermediary	3 months (±1 month) post rehabilitation discharge
MSES	Total number of SCI/D patients discharged	Outcome – Final	18 months (±1 month) post rehabilitation admission
RNL	Total number of SCI/D patients discharged	Outcome – Final	18 months (±1 month) post rehabilitation admission

Notes: FY = Fiscal Year; MSES = Moorong Self-Efficacy Scale; RNL = Reintegration to Normal Living Index.

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