PATIENT AND FAMILY REFLECTIONS ON THE USE OF SUBCUTANEOUS INSULIN TO PREVENT DIABETES - A RETROSPECTIVE EVALUATION FROM A PILOT PREVENTION TRIAL

A retrospective, semi-structured telephone interview was used to colle ct data from 28 of 31 families who participated in a pilot study testi ng subcutaneous insulin as a means to prevent or delay insulin-depende nt diabetes mellitus (IDDM) onset. Interviews were conducted an averag e of 3 years after the initiation of the subcutaneous insulin protocol . Both the high-risk person (if greater than or equal to 8 years of ag e) and a family member (spouse or parent) were interviewed. Most parti cipants reported that they were distressed to learn that they or a fam ily member were at risk for IDDM, and families readily agreed to initi ate subcutaneous insulin therapy. More children than adults reported i nsulin injections and blood glucose tests were ''hard'' or ''very hard ,'' but noncompliance was more common in adults. Of the high-risk part icipants interviewed, 58% of children and 100% of adults reported expe riencing hypoglycemia, although episodes requiring someone else's assi stance were rare, occurring in 38% of the children and 27% of the adul ts. participants remained enthusiastic about trial participation; most favored screening programs to identify those at risk for IDDM, believ ed screening should be conducted regardless of age, believed subcutane ous insulin prevented or delayed IDDM onset, and would recommend subcu taneous insulin therapy to another high-risk individual. In addition, more than 40% of children, parents, and spouses reported that they wou ld have benefited from access to a mental health professional at some point during the trial. (C) 1998 Elsevier Science Inc.