THE DEVELOPMENT OF AN INSTRUMENT FOR ASSESSING THE QUALITY-OF-LIFE OFPEOPLE WITH DIABETES - DIABETES-39

OBJECTIVES. The aim of this 2-year research project was to develop an instrument specifically designed to assess the quality of Life of peop le with diabetes. METHODS. The project was divided into two phases. In the first phase, information from a detailed literature review, from existing quality-of-life instruments, and from interviews with health professionals and people with diabetes was used to develop an initial instrument of 92 items considered to address important aspects of pati ents' lives, This questionnaire was mailed to 1,000 people with diabet es, and data from the 516 respondents were used to select the most imp ortant and useful items. Fifty items were excluded, leaving 42 items t hat constituted the pilot instrument. During phase 2, the pilot instru ment was used to assess the quality of life of 427 diabetic patients w ho completed the revised questionnaire, After analyzing this data, thr ee additional items were dropped. The final instrument consists of 39 items and covers five dimensions of: patients' lives: Energy and Mobil ity, Diabetes Control, Anxiety and Worry, Social Burden, and Sexual Fu nctioning. RESULTS. The results of validity and reliability tests cond ucted to date testify to the relevance of the 39-item questionnaire (D iabetes-39) as a valid discriminative instrument, one which shows sign ificant correlations with an overall quality-of-life assessment, the p attern of diabetes severity, and comorbidity. Further, the results fro m Diabetes-39 correlate well with the results from the established gen eric quality-of-life instrument, the Medical Outcomes Study 36-Item Sh ort-Form Health Survey. CONCLUSIONS. Validation of a duality-of-life i nstrument, however, is an ongoing process. Further research is require d to corroborate these early findings and to ensure that this is an in strument that can capture data of greatest relevance to the diabetic p atient and that is responsive to change in quality of life.