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Low impact of congenital hand differences on health-related quality of life
Monique S Ardon1, Wim G Janssen, Steven E Hovius
1Department of Rehabilitation Medicine and Physical Therapy, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands. m.ardon@erasmusmc.nl
Insights
Children with congenital hand differences (CHDs) generally report good health-related quality of life (HRQoL), similar to healthy peers. However, comorbidities and certain factors like age and ethnicity can negatively impact their HRQoL.
Area of Science:
- Pediatric Health
- Quality of Life Research
- Congenital Abnormalities
Background:
- Congenital hand differences (CHDs) can impact a child's daily life and well-being.
- Evaluating health-related quality of life (HRQoL) is crucial for understanding the holistic impact of CHDs.
- Limited data exists on HRQoL determinants in pediatric populations with CHDs.
Purpose of the Study:
- To assess health-related quality of life (HRQoL) in children with congenital hand differences (CHDs).
- To identify factors influencing HRQoL in this specific pediatric population.
Main Methods:
- A survey design was employed, collecting data from 116 children (aged 10-14 years) with CHDs at a university hospital outpatient clinic.
- Health-related quality of life (HRQoL) was measured using child self-reports from the Pediatric Quality of Life Inventory.
- Multivariable regression analysis was used to determine factors associated with HRQoL outcomes.
Main Results:
- Children with CHDs reported overall HRQoL comparable to healthy peers, with a notable exception of lower social functioning in older children (13-14 years).
- Higher ease of activity performance correlated with better HRQoL, while comorbidities were associated with lower scores across most HRQoL domains.
- Specific factors like ethnicity, bilateral involvement, previous surgery, number of affected digits, and age influenced various HRQoL subdomains.
Conclusions:
- Children with CHDs generally experience similar HRQoL to their healthy peers, though specific challenges exist.
- Comorbidities negatively affect HRQoL, whereas improved ease of activity enhances it.
- While HRQoL is important, its sensitivity in detecting changes over time or post-treatment in children with CHDs may be limited.
Objective:
To evaluate health-related quality of life (HRQoL) and its determinants in children with congenital hand differences (CHDs).
Design:
Survey.
Setting:
Outpatient clinic of a university hospital.
Participants:
Children (N=116; age range, 10-14 y) with CHDs.
Interventions:
Not applicable.
Main Outcome Measures:
HRQoL evaluated by child self-reports of the Pediatric Quality of Life Inventory and compared with reference values of healthy peers. Multivariable regression analysis was performed to investigate determinants of HRQoL.
Results:
All children with CHDs had scores similar to those of healthy peers, except for a lower score on social functioning in children aged 13 to 14 years. Higher ease of activity performance was related to higher HRQoL scores, and presence of comorbidity was related to lower scores on all HRQoL subdomains except for school functioning. Additionally, physical health was influenced by ethnicity, bilateral involvement, and previous surgery; emotional functioning by the number of affected digits; school functioning by age; and total HRQoL by bilateral involvement.
Conclusions:
Children with CHDs report similar HRQoL as healthy peers. HRQoL decreased in the presence of comorbidity but increased with higher ease of activity performance. Scores on some subdomains were improved by the number of affected digits, but were reduced by age, ethnicity, bilateral involvement, and surgery. Although HRQoL is an important health outcome, it may not be sensitive to detect changes over time or changes after treatment in children with CHDs.
