Background Approximately 1,700 persons in The Netherlands are suffering from Huntington’s disease (HD). It’s estimated that in addition 6,000–9,000 people are at risk. One of the characteristics of HD is a very high energy requirement and swallow difficulties. To prevent malnutrition proper guidance by a dietitian is essential.
Aim The aim of the study is to determine the level of knowledge of the treatment of HD-patients among dietitians in the Netherlands.
Method During the General Meeting of the Members of the Dutch Dietitians Association in November 2015 the members of the Network Dietitians Huntington’s Disease of The Netherlands (DHDNL) handed out questionnaires. The attendants were asked to complete these to indicate what they knew about Huntington’s disease and whether they ever had treated a patient. We also wanted to know if there was a need for more information about nutrition and HD.
Results The questionnaire was completed by 27 dietitians (62% independent, hospital, 15% Nursing Homes, and 4% Mental Health Care, 4% other, like students). The general level of their knowledge of HD treatment turned out to be quite low. The majority had never treated a HD patient (81%), although nearly half (46%) practiced as a dietitian for 10 years or more.
Conclusion Many of the dietitians who are working outside the specialised HD centres are not or hardly familiar with HD and the appropriate diets. However, they, too, can treat these patients in their own practices.
In the coming years the DHDNL through an informative website and additional education aims to improve knowledge and raise the standard.
- The Netherlands