Case Report: Burden of Illness in Narcolepsy Type 1: Hikikomori in a Teenage Girl

Narcolepsy type 1 (NT1) deeply impacts on quality of life, especially during adolescence, with NT1 children and adolescents that frequently report difficulties in integration with peers and decreased participation in after-school activities. Here we describe the case of NT1 teenager girl presenting with severe physical and social withdrawal, fulfilling the proposed diagnostic criteria for hikikomori, together with the classic NT1 symptoms. Social withdrawal is an overlooked phenomenon among NT1 children and adolescents that, if present, require a multidisciplinary approach and personalized interventions, but patients can benefit from NT1 pharmacological treatment.

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Assessing Health-Related Quality of Life in Children and Adolescents with Diabetes: Development and Psychometrics of the Type 1 Diabetes and Life (T1DAL) Measures

Journal of Pediatric Psychology ◽

10.1093/jpepsy/jsz083 ◽

2019 ◽

Cited By ~ 1

Author(s):

Marisa E Hilliard ◽

Charles G Minard ◽

David G Marrero ◽

Maartje de Wit ◽

Debbe Thompson ◽

...

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Clinical Research ◽

Children And Adolescents ◽

Cognitive Debriefing ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Abstract Objective To develop and validate new measures of diabetes-specific health-related quality of life (HRQOL) for people with type 1 diabetes (T1D) that are brief, developmentally appropriate, and usable in clinical research and care. Here we report on the phases of developing and validating the self-report Type 1 Diabetes and Life (T1DAL) measures for children (age 8–11) and adolescents (age 12–17). Methods Measure development included qualitative interviews with youth and parents (n = 16 dyads) followed by piloting draft measures and conducting cognitive debriefing with youth (n = 9) to refine the measures. To evaluate the psychometric properties, children (n = 194) and adolescents (n = 257) at three T1D Exchange Clinic Network sites completed the age-appropriate T1DAL measure and previously validated questionnaires measuring related constructs. Using psychometric data, the investigators reduced the length of each T1DAL measure to 21 and 23 items, respectively, and conducted a final round of cognitive debriefing with six children and adolescents. Results The T1DAL measures for children and adolescents demonstrated good internal consistency (α = 0.84 and 0.89, respectively) and test–retest reliability (r = 0.78 and 0.80, respectively). Significant correlations between the T1DAL scores and measures of general quality of life, generic and diabetes-specific HRQOL, diabetes burden, and diabetes strengths demonstrated construct validity. Correlations with measures of self-management (child and adolescent) and glycemic control (adolescent only) demonstrated criterion validity. Factor analyses indicated four developmentally specific subscales per measure. Participants reported satisfaction with the measures. Conclusions The new T1DAL measures for children and adolescents with T1D are reliable, valid, and suitable for use in care settings and clinical research.

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Health-related quality of life in children and adolescents with type 1 diabetes mellitus from Montenegro: relationship to metabolic control

Journal of Pediatric Endocrinology and Metabolism ◽

10.1515/jpem-2015-0420 ◽

2016 ◽

Vol 29 (6) ◽

Cited By ~ 10

Author(s):

Mira Samardzic ◽

Husref Tahirovic ◽

Natasa Popovic ◽

Milena Popovic-Samardzic

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Children And Adolescents ◽

Healthy Children ◽

Health Related Quality ◽

Proxy Report ◽

Related Quality ◽

Health Related

AbstractThe aim of this study was to evaluate health-related quality of life (HRQOL) in children and adolescents with type 1 diabetes (TIDM) in Montenegro compared with healthy controls and to estimate the effect of metabolic control on perceptions of HRQOL.This study involved children and adolescents with T1DM, age- and gender-matched healthy children and their parents. Children and adolescents with T1DM and their parents completed Peds QL 4.0 Generic Core Scales (GCS) and PedsQL 3.0 Diabetes Module. Healthy children and their parents completed self- and proxy-report of Peds QL 4.0 GCS.Our study (self- and proxy-report) showed that children and adolescents with T1DM had lower HRQOL on domain “Psychosocial health” and “School functioning” compared with healthy population (p=0.008; p≤0.001). Lower glycosylated hemoglobin (HbACompared with the healthy children, the HRQOL was lower among children and adolescents with T1DM. Lower HbA

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