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Infantile Haemangioma - Elaboration and Piloting a Specific Quality of Life Questionnaire
Anca-Maria Raicu1, Eugenia Claudia Bratu1, Mihai Buzatu1
1"Carol Davila" University of Medicine and Pharmacy, Bucharest, Romania.
Insights
This study developed a 28-item questionnaire to assess the quality of life for children with infantile haemangiomas and their parents. This tool helps tailor treatments and measure outcomes for pediatric dermatology patients.
Area of Science:
- Pediatric Dermatology
- Tumor Biology
- Quality of Life Research
Background:
- Infantile haemangiomas are common pediatric tumors impacting children under two years old.
- These conditions cause significant parental concern.
- Existing quality of life instruments lack specificity for infantile haemangiomas.
Discussion:
- A novel 28-item questionnaire was developed to evaluate quality of life in pediatric patients with infantile haemangiomas.
- The instrument assesses four domains: child's physical health, child's social function, parents' emotional health, and parents' social function.
- Item generation involved literature reviews, expert consensus, and qualitative analysis of parental concerns.
Key Insights:
- The questionnaire was piloted with relatives of patients, demonstrating good acceptance.
- It provides a specific measure for patient-reported outcomes in infantile haemangioma care.
- The tool facilitates comparison of quality of life between patients and parents.
Outlook:
- This instrument is crucial for adapting treatments to the specific needs of affected children and their families.
- It enables the evaluation of new therapeutic options in pediatric oncology.
- Further validation and application in clinical settings are anticipated.
Abstract:
Backround:Infantile haemangiomas are the most common benign tumours of the child with clinical manifestations in the first two years of life, which is an additional cause of parents' concerns. Objective:This study describes the first stage in elaborating a specific instrument to evaluate the quality of life of both patients with infantile haemangioma under two years of age and their parents, adapted to the reality of the Romanian context. Methods:Items were generated from a literature review - from both the current generic pediatricians' instruments and specific tools in dermatology for assessing quality of life and the existing consensus among experts - as well as from a qualitative analysis of parents' concerns. The instrument was piloted on a group of patients' relatives. Results:We have developed a 28-item specific infantile haemangioma quality of life questionnaire with four sub-scales to assess physical health, the social function of the child, parents' emotional health and the social function of parents. Demographic data and clinical features (meanings of symptoms and outcomes) that have an impact on the quality of life were obtained. Conclusion:It is important to be able to measure and compare the quality of life of both patients with infantile haemangioma and their parents for adapting the treatment to the specific needs of patients and their family. The effectiveness of new therapeutic options which are especially useful for infants with haemangiomas can be checked by using the questionnaire as a measure of patient-reported outcome. The questionnaire developed by us was well accepted by the patients' parents.
