Assessing the reliability and validity of a health-related quality of life instrument, CPADULT, in a Dutch sample of adults with severe disabilities who are non-ambulatory.

BACKGROUND: A measure to provide insight regarding health-related quality of life of adults with severe motor and intellectual disabilities was lacking. For this reason, the CPADULT was developed. This measure includes domains relating to an individual's physical, mental, and social functioning. The purpose of this study was to assess the psychometric characteristics of the CPADULT. METHOD: Caregivers (n = 47; 77% female, 23% male) of individuals with severe disabilities who are non-ambulatory completed the questionnaire. Internal consistency, test-retest reliability and construct validity were analysed. RESULTS: Internal consistency was adequate with Cronbach's alpha values from 0.75 to 0.95. Test-retest reliability was good, as intraclass correlation coefficient of the total score was 0.84 (domains: 0.61-0.89). Construct validity was confirmed with significant differences between subgroups of motor or intellectual abilities. CONCLUSION: The CPADULT has sufficient reliability and validity as a proxy measure of health-related quality of life for adults with severe disabilities who are non-ambulatory.

Development and sensibility assessment of a health-related quality of life instrument for adults with severe disabilities who are non-ambulatory.

BACKGROUND: Insight in health-related quality of life (HRQoL) of adults with severe disabilities who are non-ambulatory is important, but a measure is lacking. The aim was to develop a HRQoL measure for this group. METHOD: The developmental process consisted of the adaptation process of a proxy HRQoL measure for children with severe disabilities who are non-ambulatory and the assessment of the sensibility of the developed instrument. A three-step process was used: focus groups, e-survey and interviews. RESULTS: In total, 72% of the items remained unchanged. Three new items and one element to an existing item were added. In ten items, the formulation of the items was adapted to the target group. Concerning the sensibility, respondents suggested minor changes to the instruction and the output scales. CONCLUSIONS: This study has yielded a proxy HRQoL measure for adults with severe disabilities who are non-ambulatory, the CPADULT, with good sensibility.

Sensibility of the stump in adults with an acquired major upper extremity amputation.

OBJECTIVES: To compare the sensibility of the stump in adults with an acquired major upper extremity amputation with the sensibility of the unaffected side and with the corresponding body parts of healthy controls, as well as to relate the sensibility of the stump to daily functioning. DESIGN: A survey with matched controls. SETTING: A tertiary referral center. PARTICIPANTS: A referred sample of patients (n=30) with an acquired upper extremity amputation, at least 1 year after amputation, and control subjects (n=30) matched for age, sex, and hand dominance were evaluated. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Three different modalities of sensibility were measured: (1) touch-pressure sensibility, tested using Semmes-Weinstein monofilaments; (2) stereognosis, detected using the Shape and Texture Identification test; and (3) kinesthesia. Daily functioning was assessed using the Upper Extremity Functional Status Module of the Orthotics and Prosthetics Users' Survey. RESULTS: The mean time ± SD since amputation was 20±17.8 years. Twenty patients used a prosthesis. The stump sensibility was similar to that of unaffected hands and tended to be less than that of unaffected arms (P=.08). The patients using a prosthesis had significantly poorer touch-pressure sensibility in the stump compared with the nonusers (P=.04). However, touch-pressure sensibility and stereognosis were worse in the patients than in controls (P<.001 and P=.03, respectively). Two patients were able to identify shapes using their stump. Kinesthesia of the shoulders and elbows did not differ between the affected and unaffected side. Moreover, daily functioning was not related to sensibility. CONCLUSIONS: The touch-pressure sensibility in the stumps of patients using prostheses was poorer than the sensibility in nonusers, and remarkably, the unaffected extremities of the amputees were less sensitive than the extremities of the controls.