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Improved Health-related Quality of Life in Children and Adolescents with Type 1 Diabetes： A Two-year Prospective Family Intervention RCT Study

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Journal of Health Science 2017年第2期5卷 45-55页

作者： Peter Sand Marizela Kljajic gun forsander Department of Pediatrics Institute of Clinical Sciences Sahlgrenska Academy at The University of Gothenburg The Queen Silvia Children's Hospital Sahlgrenska University Hospital Gothenburg Sweden and V&rdalinstitutet The Swedish Institute for Health Sciences Sweden Sahlgrenska University Hospital Gothenburg Sweden

The aim of this two-year prospective RCT-study was to evaluate children＇s HRQOL after a family intervention providing support with four sessions for six months following diagnosis of type 1 diabetes （T1DM）, with follow-up sessions at 12, 18, and 24 months. Ninety-eight children aged 3-15 years, recently diagnosed with T1DM, participated with their parents. At six and 24 months after diagnosis, the child, mother, and father independently completed the PedsQL 4.0 Generic Scale and PedsQL 3.0 Diabetes Module Scale, and the child＇s glycemic control （HbAlc value） was measured. After six months, children in the intervention group had better generic HRQOL than the control group （P 〈 0.03）. At 24 months, these children and their fathers rated the child＇s diabetes-specific HRQOL as significantly better （P 〈 0.01, P 〈 0.04） and the child＇s worry as lower （P 〈 0.02, P 〈 0.03） compared to the control group. Communication skills improved significantly over time in the intervention group （P 〈 0.01）. There were no significant differences between control and intervention group regarding glycemic control, measured as HbA 1 c, either at 6 or 24 months. This study highlights the importance of psychological support after the onset of T1DM, especially facilitating communication skills within the family in the immediate and ongoing care.

关键词： HRQOL family intervention RCT HbAlc type 1 diabetes children--adolescents glycemic control.

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The Outpatient Clinic Visit: Expectations and Fulfilment of Perceived Needs in Adolescents with Type 1 Diabetes

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Journal of Diabetes Mellitus 2021年第2期11卷 52-67页

作者： Daniel Novak John Eric Chaplin gun forsander Department of Pediatrics Institute for Clinical Sciences Sahlgrenska Academy University of Gothenburg Gothenburg Sweden Region Vä stra Gö taland Sahlgrenska University Hospital and the Queen Silvia Children’s Hospital Department of Pediatrics Gothenburg Sweden

Background: To make outpatient visits for adolescents with diabetes successful, it is important for health care professionals to meet the adolescents’ needs and wishes. Aims: The aim is to investigate adolescents’ expectations of an outpatient diabetes clinic visit in comparison to what was deemed to be delivered and contrast this outcome in adolescents with self-reported high- and low-diabetes distress respectively. Methods: All adolescents in Sweden with type 1 diabetes, aged 15 to 18 years, were identified via The National Pediatric Diabetes Registry (SWEDIABKIDS) and asked to complete an online questionnaire regarding their expectations and the support received during the outpatient diabetes clinic visit. Results: 453 adolescents completed the survey. Boys’ expectations of discussion topics were mainly met while girls, especially those with diabetes distress, felt their discussion needs were not met regarding quality-of-life aspects. Conclusions: Although adolescents’ expectations are in general met during the diabetes outpatient clinic visit, aspects related to living with diabetes are not being met especially among female adolescents who reported diabetes distress. This study shows a gender difference both regarding expected discussion topics and what was deemed covered. Practice Implications: A multi-professional, individual person-centred care approach is needed at the diabetes outpatient clinic. This paper proposes that agenda setting performed by the adolescent, and agreed by the physician, prior to the outpatient clinic visit could facilitate individualized care and better meet the adolescents’ needs in a shared decision-making process.

关键词： Adolescents Type 1 Diabetes Diabetes Distress Gender Expectations Outpatient Clinic Visit Agenda Setting

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