Quality of life in children with Type 1 diabetes: a comparison of general and diabetes‐specific measures and support for a unitary diabetes quality‐of‐life construct

Nansel, Tonja R.; Weisberg-Benchell, J.; Wysocki, Timothy; Laffel, Lori; Anderson, Barbara J.

doi:10.1111/j.1464-5491.2008.02574.x

Cited by 64 publications

(76 citation statements)

References 25 publications

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“…A 5-cluster solution explained only ~43% of the total variation among item responses. Our conclusions are consistent with those of Nansel et al, 21 who conducted a similar analysis on responses from 447 youth with T1DM using PCA with a promax rotation and concluded that the PedsQL-T1DM total score, but not the original subscales, was the most appropriate unit for analysis. Their 5-factor structure differed from our 5-cluster solution, perhaps because of differences in analytic approaches or study populations.…”

Section: Discussionsupporting

confidence: 91%

Demographic and Clinical Correlates of Diabetes-Related Quality of Life among Youth with Type 1 Diabetes

Lawrence

Yi‐Frazier

Black

et al. 2012

The Journal of Pediatrics

106

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Objectives To evaluate the reliability and cluster structure of the Pediatric Quality of Life Inventory Type 1 Diabetes Module 3.0 (PedsQL-T1DM) and associated subscales and to explore the associations between PedsQL-T1DM total score and demographic and clinical characteristics and clinical indicators among a large racially/ethnically diverse cohort of youth with type 1 diabetes. Study design Principal components analysis was conducted on responses from the PedsQL-T1DM child self-report forms completed by SEARCH for Diabetes in Youth study participants aged ≥5 years. Multivariate linear regression models were fit to examine the associations among PedsQL-T1DM total score, demographic and clinical characteristics, and clinical indicators. Results The sample comprised 2602 youth with a mean age of 13.6 ± 4.1 years and a mean T1DM duration of 62.1 ± 47.0 months. Principal components analysis did not support the 5 existing PedsQL-T1DM subscales. In multivariate analyses, the PedsQL-T1DM total score was negatively and significantly associated with younger age (5–7 years), female sex, receiving insulin by injection (vs pump), having parents without a college degree, Medic-aid/Medicare insurance, and having a comorbid medical condition. Youth with poor glycemic control based on their age-specific hemoglobin A1c target values and those with depressive symptoms had significantly lower PedsQL-T1DM scores than their counterparts with good control and no or limited depressive symptoms. Conclusion This study has identified sociodemographic and clinical characteristics of youth with T1DM more likely to experience poor diabetes-specific quality of life. The association of lower PedsQL-T1DM scores with depressive symptoms and poor glycemic control is especially concerning and may be the focus of future interventions and studies.

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Section: Discussionsupporting

confidence: 91%

Demographic and Clinical Correlates of Diabetes-Related Quality of Life among Youth with Type 1 Diabetes

Lawrence

Yi‐Frazier

Black

et al. 2012

The Journal of Pediatrics

106

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“…The PedsQL™ Generic Core Scales and Diabetes Module are psychometrically sound [18, 32], and internal consistency was adequate in this sample (Generic Core Scales: adolescent: α=0.87, caregivers: α=0.87; Diabetes Module: adolescent: α=0.71, caregivers: α=0.74). Mean scores are summarized in Table 2 and are similar to published reports in other convenience samples [24]. …”

Section: Methodssupporting

confidence: 79%

“…This approach to QOL measurement may not represent all aspects of adolescents’ QOL, and Nansel and colleagues [24] noted concerns with individual subscale reliability. As such, results may vary with the inclusion of all PedsQL™ scale scores.…”

Section: Discussionmentioning

confidence: 99%

How poorer quality of life in adolescence predicts subsequent type 1 diabetes management and control

Hilliard¹,

Mann²,

Peugh³

et al. 2013

Patient Education and Counseling

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Objective Detriments in quality of life (QOL) may contribute to the common, costly decline in adolescents’ type 1 diabetes management and control, yet we know little about how this might happen. Methods Participants were 150 adolescents (age 13–18) with type 1 diabetes and their parents. We constructed a latent QOL variable from a multi-informant, multi-domain assessment when participants entered the study. The QOL variable was examined in relation to prospective assessments of diabetes management (blood glucose monitoring frequency; BGM) and control (hemoglobin A1c). We used an indirect path model to test the links among these variables, using bias-corrected bootstrapping. Results Poorer QOL at baseline was indirectly linked with higher A1c at 12 months via less frequent BGM obtained at 6 months (b=−0.01, 95% CI=−0.025, −0.004, p<0.05). Older age (b=- 0.32), longer diabetes duration (b=−0.07), and insulin delivery via injections versus the insulin pump (b=0.67) were covariates of less frequent BGM, and unmarried caregiver status was associated with higher A1c (b=−0.76), all ps<0.05. Conclusions In this study, poorer QOL acted as a barrier to effective diabetes management, subsequently altering diabetes control. Practice Implications Efforts to monitor and enhance QOL may hold promise for improving adolescents’ diabetes outcomes in the future.

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“…Mothers especially, but also fathers, assessed their child's HRQOL differently than the children themselves, which is line with earlier studies [21,27]. The fathers in the intervention group had lower estimates of their child's worry than the fathers in the control group; this was true both at six and 24 months.…”

Section: Discussionsupporting

confidence: 79%

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

Sand¹,

Kljajić²,

Forsander³

2017

JHS

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Abstract: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 (HbA1c 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 HbA1c, 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.

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Quality of life in children with Type 1 diabetes: a comparison of general and diabetes‐specific measures and support for a unitary diabetes quality‐of‐life construct

Cited by 64 publications

References 25 publications

Demographic and Clinical Correlates of Diabetes-Related Quality of Life among Youth with Type 1 Diabetes

Demographic and Clinical Correlates of Diabetes-Related Quality of Life among Youth with Type 1 Diabetes

How poorer quality of life in adolescence predicts subsequent type 1 diabetes management and control

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

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