Quality of life assessment for young children with developmental disabilities and their families: Development of a quality of life questionnaire.

Early intervention for the treatment of developmental delays in children birth through three years is a fairly recent programmatic development. One of the goals of early intervention services is to improve child and family quality of life. However, no reliable and valid instruments currently exist to assess child and family quality of life for this particular population. The present study describes the development of the Quality of Life Questionnaire. The first step in the development of this questionnaire consisted of a comprehensive review of the developmental disabilities and pediatric chronic illnesses literatures in order to develop an interview (Quality of Life Interview - QOLI). Professionals in the early intervention and developmental disabilities fields then provided feedback on the face and content validity of the interview questions. The QOLI consisted of 322 questions and 11 quality of life domains. The principal investigator then interviewed a sample of 15S mothers who had children who were typically developed, had developmental delays, or were typically developed with significant behavior problems. The mothers answered the questions and provided feedback on item relevance to family quality of life. Statistical analysis of the interview data was conducted to reduce the interview to a briefer self-report questionnaire, which resulted in a 58-item questionnaire (Quality of Life Questionnaire - QOLQ). The questionnaire was then distributed to 228 mothers of children ages three years or younger. A factor analysis was conducted and four conceptually appealing factors emerged (Developmental Level, Behavior Problems, Satisfaction/Social Support, and Psychiatric History). Internal consistency between the items was found to be very good between the subscales and the items within each subscale. A sub-sample of 34 mothers completed the questionnaire two times, approximately one week apart to determine the test-retest reliability, which ranged from acceptable to good on all of the subscales. The QOLQ differentiated between the three groups (developmental delay, typically developed, and behavior problem). Unresolved issues and future directions related to quality of life assessment development and utility were discussed