A nutrition survey of and recommendations for individuals with Prader-Willi syndrome who live in group homes

Abstract

The purpose of this study was to describe anthropometric data and identify diet-related problems of individuals with Prader-Willi syndrome (PWS) who reside in group homes. A group home is a licensed foster care facility that provides 24-hour care for the developmentally disabled. Questionnaires were sent to dietitians (or the person responsible for nutrition care) of 25 group homes; responses from 18 homes were analyzed. The mean age of residents with PWS was 25 +/- 8.4 years and the mean height was 152.4 +/- 9.7 cm. The mean weight for 19- to 22-year-old men was 75.5 +/- 26.8 kg and that for women of the same age was 74.5 +/- 20 kg. The residents consumed a mean of 1,000 to 1,500 kcal/day. Most of the group homes (n = 16) locked their kitchens at night, and in 12 of the homes stealing and hoarding of food occurred. Pica behavior (eating of nonfoods) was reported in 7 homes. One third of all residents had success in weight loss and were on a maintenance diet, but a major problem was determination of a desirable weight goal. Our key recommendations for dietitians are weigh residents weekly; use the body mass index with prescribed zones for determination of weight goals; monitor change in circumference measurements; follow the guidelines of 7 to 8 kcal/cm of height for weight loss and 10 to 14 kcal/cm of height for weight maintenance; administer 1,000 kcal/day or more and encourage daily aerobic exercise; respect food preferences while adhering to dietary prescriptions; adhere to strict food control procedures; and use nutrition education methods and an interdisciplinary approach for behavior modification.