Follow‐up results on monitoring and discussing health‐related quality of life in adolescent diabetes care: benefits do not sustain in routine practice

de Wit M, Delemarre-Van de Waal HA, Bokma JA, Haasnoot K, Houdijk MC, Gemke RJ, Snoek FJ. Follow-up results on monitoring and discussing health-related quality of life in adolescent diabetes care: benefits do not sustain in routine practice. Objective: We previously demonstrated that adding monitoring and discussion of health-related quality of life (HRQoL) of adolescents with type 1 diabetes to routine periodic consultations positively impacts psychosocial well-being and satisfaction with care. The current study examines whether these positive effects are maintained 1 year after the intervention was terminated and patients received regular care again, with no formal HRQoL assessment. Patients and methods: Forty-one adolescents with type 1 diabetes were followed for 1 year after the initial HRQoL intervention, in which their HRQoL had been assessed and discussed as part of period consultations using the PedsQL. Changes in physical and psychosocial well-being [Child Health Questionnaire-Child Form 87 (CHQ-CF87), diabetes family conflict scale (DFCS), Center for Epidemiological Studies scale for Depression (CES-D)], satisfaction with care [Patients' Evaluation of the Quality of Diabetes (PEQ-D) care], and glycemic control (HbA1c) were determined 12 months after the HRQoL intervention had ended. Results: One year after the HRQoL intervention, mean scores on CHQ subscales: behavior (p = 0.001), mental health (p = 0.004), and self-esteem (p < 0.001) had decreased, whereas the family activities subscale remained stable. Adolescents were less satisfied with their care (p = 0.012), and HbA1c values had increased significantly 12 months postintervention (p = 0.002). Conclusions: The beneficial effects of an office-based HRQoL intervention in adolescents with diabetes largely disappear 1 year after withdrawing the HRQoL assessment procedure. This finding underscores the importance of integrating standardized evaluation and discussion of HRQoL in routine care for adolescents with diabetes.