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Gepubliceerd in: Quality of Life Research 5/2017

19-11-2016

Factors associated with health-related quality of life (HRQOL) in adults with short stature skeletal dysplasias

Auteurs: Nitasha Dhiman, Alia Albaghdadi, Cheryl K. Zogg, Meesha Sharma, Julie E. Hoover-Fong, Michael C. Ain, Adil H. Haider

Gepubliceerd in: Quality of Life Research | Uitgave 5/2017

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Abstract

Introduction

Numerous factors associate with health disparities. The extent to which such factors influence health-related quality of life (HRQOL) among adults with short stature skeletal dysplasias (SD) is unknown. In an effort to update and clarify knowledge about the HRQOL of adults with SD, this study aimed to quantify HRQOL scores relative to the American average and assess whether specific indicators are associated with lower scores.

Methods

Members (>18 years) of Little People of America were invited to complete an online survey assessing HRQOL using the SF-12 supplemented with indicator-specific questions. SF-12 components (Physical Component Summary, PCS; Mental Component Summary, MCS) were compared to the standardized national American mean. Scores were divided at the median to identify factors associated with lower scores using multivariable logistic regression, adjusting for age, gender, race, education, and employment.

Results

A total of 189 surveys were completed. Mean and median PCS and MCS were below the national mean of 50 (p < 0.001). Advancing decade of age corresponded to a significant decline in PCS (p < 0.001) but not MCS (p = 0.366). Pain prevalence was high (79.4%); however, only 5.9% visited a pain specialist. Significant factors for lower PCS included age >40 years (p = 0.020), having spondyloepiphyseal dysplasia congenita (SED) or diastrophic dysplasia relative to achondroplasia (p = 0.023), pain (p < 0.001), and “partial” versus “full” health insurance coverage (p = 0.034). For MCS, significant factors included a lack of social support (p = 0.002) and being treated differently/feeling stigmatized by health care providers (p = 0.022).

Conclusions

Individuals with SD face documented disparities and report lower HRQOL. Further research and interventions are needed to modify nuanced factors influencing these results and address the high prevalence of pain.
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Metagegevens
Titel
Factors associated with health-related quality of life (HRQOL) in adults with short stature skeletal dysplasias
Auteurs
Nitasha Dhiman
Alia Albaghdadi
Cheryl K. Zogg
Meesha Sharma
Julie E. Hoover-Fong
Michael C. Ain
Adil H. Haider
Publicatiedatum
19-11-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2017
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1455-7