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

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.

Published by Journal of the American Dietetic Association, 1992. The guideline itself is at the source linked here.

pubmed.ncbi.nlm.nih.gov/1624651/