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Assessing pain catastrophizing and functional disability in pediatric epidermolysis bullosa patients
Sneha Rangu1, Jessica Collins2, Maria Teresa García-Romero3
1Section of Dermatology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Insights
Pain catastrophizing and functional disability are linked in pediatric epidermolysis bullosa (EB) patients and their families. Interventions addressing negative pain thoughts may improve quality of life for those with EB.
Area of Science:
- Pediatric Psychology
- Dermatology
- Pain Management
Background:
- Epidermolysis Bullosa (EB) is a rare genetic disorder characterized by fragile skin that leads to chronic wounds and significant pain.
- Assessing the psychological impact, specifically pain catastrophizing and functional disability, is crucial for comprehensive EB care.
- Understanding these factors in both pediatric patients and their caregivers is essential for developing effective support strategies.
Purpose of the Study:
- To evaluate pain catastrophizing and functional disability in pediatric patients with Epidermolysis Bullosa (EB).
- To examine the relationship between pain catastrophizing, functional disability, and disease severity (age, BSA involvement) in EB patients.
- To assess these factors in both children with EB and their parents/guardians.
Main Methods:
- A one-time online survey was administered to 31 pediatric EB patients (ages 8-16) and their parents/guardians.
- Participants completed the Pain Catastrophizing Scale (PCS) and the Functional Disability Inventory (FDI) for both child and parent.
- Data analysis explored correlations between pain catastrophizing, functional disability, and clinical factors like disease severity and body surface area (BSA) involvement.
Main Results:
- Significant positive correlations were found between higher scores for pain catastrophizing and functional disability with increased disease severity and BSA involvement in EB patients and their caregivers.
- Child PCS scores correlated with the percentage of skin involvement, while parent-reported measures showed stronger associations with disease severity.
- Older children reported greater functional disability compared to younger children and their parents.
Conclusions:
- Findings indicate a strong link between negative pain-related thoughts and functional limitations in pediatric EB patients and their caregivers.
- Psychological, psychiatric, and behavioral interventions targeting pain management may offer significant benefits for individuals with EB.
- These interventions could help mitigate the impact of chronic pain and improve daily functioning in this population.
Background/Objectives:
The primary objective was to assess pain catastrophizing and functional disability in pediatric patients with epidermolysis bullosa (EB) and their parents/guardians. Secondary objectives included examining relationships between pain catastrophizing, functional disability, and correlations with other factors (e.g., age, disease severity, and percent of body surface area (BSA) involved).
Methods:
Patients with EB ages 8-16 and their parents/guardians who were English or Spanish speaking completed a one-time online survey. Parent measures included: demographics questionnaire, Pain Catastrophizing Scale-Parent (PCS), and Parent Functional Disability Inventory (FDI). Child measures included: PCS child and child FDI. Higher scores on both scales indicate higher levels of catastrophizing and functional disability.
Results:
Of 31 children, the mean age was 11.47 years and the majority (70.97%) had dystrophic EB. Mean scores were: 35.84 = PCS parent; 34.58 = PCS child; 30.87 = parent FDI; 29.77 = child FDI. Total scores for PCS parent, parent FDI, and child FDI increased significantly with disease severity and percentage of involved BSA (p < .01 for all). Total scores for PCS child increased significantly with percent of EB skin involvement (p = .04) but not disease severity. Older children reported more functional disability than their parents and younger children (p = .02).
Conclusions:
Our results demonstrate significant positive correlations between negative thoughts related to pain and the experience of functional difficulties in patients with EB and their caregivers. Psychological, psychiatric, and/or behavioral interventions to help managing chronic pain may be effective for patients with EB.
