GCK-MODY is characterized by stable, mildly elevated glycemia. Microvascular complications are exceedingly rare and treatment is not recommended outside of pregnancy. Diet alteration is not expected to have significant impact on glycemia as glucose homeostasis is preserved. Yet, some subjects with GCK-MODY in the University of Chicago National Monogenic Diabetes Registry report decreased freedom to eat scores on quality of life questionnaires. The purpose of this study was to understand the perceptions of those with GCK-MODY on the impact of diet on glycemia through thematic analysis of Registry discussion groups transcripts. Participants were 56 individuals, ages 23-75 years, and 80% female. Emergent themes revealed division in views commonly held by respondents. One group was characterized as seeing the diagnosis of GCK-MODY liberating their choices and perceptions about food, often accompanied by personal examples of ineffectiveness of diet on changing glycemia. Conversely, a theme of restriction and rigidity was seen in others, with some respondents following strict, regimented diets, and practicing frequent self-monitoring of blood glucose. Fear of complications or health symptoms attributed to GCK-MODY were common motivators for dietary choices. Emotional distress was also frequently encountered. This qualitative study demonstrates dichotomous views held by respondents in regard to the impact of diet on glycemia in GCK-MODY with associated psychological impact. The themes seen in this discussion group are not necessarily generalizable to all individuals with GCK-MODY. Of 388 eligible participants, only 56 people have joined the GCK-MODY discussion group. It may be that those with high convictions in their beliefs about diet are overrepresented in this group. Nevertheless, the significant division in perceptions, focus on diets, and frequency of restrictive diets highlights the need for additional studies into the efficacy of diet on glycemia in this unique subset of hyperglycemia.


L.R. Letourneau: None. K. Chan: None. M.V. Salguero Bermonth: None. R.N. Naylor: None.


National Institute of Diabetes and Digestive and Kidney Diseases (R01DK104942, P30D70, DK020595, K23DK114564)

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