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

Authors

  • Maartje De Wit,

    Corresponding author
    1. Department of Medical Psychology, VU University Medical Center, P. O. Box 7057, 1007 MB Amsterdam, The Netherlands
    2. EMGO Institute, VU University Medical Center, P. O. Box 7057, 1007 MB Amsterdam, The Netherlands
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  • Henriette A. Delemarre-van de Waal,

    1. Department of Pediatrics, Leiden University Medical Center, P. O. Box 9600, 2300 RC Leiden, The Netherlands
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  • Jan Alle Bokma,

    1. Department of Pediatrics, Spaarne Ziekenhuis, P. O. Box 770, 2130 AT Hoofddorp, The Netherlands
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  • Krijn Haasnoot,

    1. Department of Pediatrics, Medical Center Alkmaar, P. O. Box 501, 1800 AM Alkmaar, The Netherlands
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  • Mieke C Houdijk,

    1. Department of Pediatrics, Juliana Kinderziekenhuis, Sportlaan 600, 2566 MJ Den Haag, The Netherlands
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  • Reinoud J Gemke,

    1. Department of Pediatrics, VU University Medical Center, P. O. Box 7057, 1007 MB Amsterdam, The Netherlands
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  • Frank J Snoek

    1. Department of Medical Psychology, VU University Medical Center, P. O. Box 7057, 1007 MB Amsterdam, The Netherlands
    2. EMGO Institute, VU University Medical Center, P. O. Box 7057, 1007 MB Amsterdam, The Netherlands
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M. de Wit, PhD, Department of Medical Psychology, VU University Medical Center, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands.
Tel: +31 20 4448224;
fax: +31 20 4448230;
e-mail: m.dewit@vumc.nl

Abstract

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.

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