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

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

Research output: Contribution to journalArticle

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.

LanguageEnglish (US)
Pages1-12
Number of pages12
JournalQuality of Life Research
DOIs
StateAccepted/In press - Nov 19 2016

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Quality of Life
Pain
Achondroplasia
Insurance Coverage
Health Insurance
Social Support
Health Personnel
Emotions
Logistic Models
Education
Health
Research
Surveys and Questionnaires

Keywords

  • Disparities
  • Dwarfism
  • Health-related quality of life
  • Skeletal dysplasia

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Factors associated with health-related quality of life (HRQOL) in adults with short stature skeletal dysplasias. / Dhiman, Nitasha; Albaghdadi, Alia; Zogg, Cheryl K.; Sharma, Meesha; Hoover-Fong, Julie E.; Ain, Michael C.; Haider, Adil H.

In: Quality of Life Research, 19.11.2016, p. 1-12.

Research output: Contribution to journalArticle

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