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Factors influencing quality of life in children with low-flow vascular malformations: a qualitative study using focus
E Casassa1, A Bergeron2, A Maruani3
1Reference Centre for Rare Skin Diseases, Dermatology Department, CHU Toulouse, Paul Sabatier University, Toulouse, France.
Insights
This study identified key factors affecting the quality of life (QoL) in children with low-flow vascular malformations, including medical care, self-image, and social interactions, to improve patient support.
Area of Science:
- Pediatric Health
- Vascular Anomalies
- Quality of Life Research
Background:
- Limited research exists on the quality of life (QoL) for children with low-flow vascular malformations.
- This study is the first to explore factors influencing QoL in this pediatric population.
Purpose of the Study:
- To identify and understand the factors that influence the quality of life (QoL) in children diagnosed with low-flow vascular malformations.
Main Methods:
- A qualitative study utilizing focus group interviews with children and analysis of their experiences.
- Conducted across four expert centers for vascular anomalies, involving 26 participants, including 10 children aged 11-15.
- Employed theme-based content analysis and qualitative discourse analysis of transcribed sessions.
Main Results:
- Identified four main categories of influencing factors: medical care, self-image, social impact on daily activities, and social relationships.
- These factors contribute to intrafamily stress and may impact future identity development in affected children.
- Data saturation was achieved after ten focus group sessions.
Conclusions:
- The findings offer a crucial framework for healthcare providers to enhance patient care and improve QoL for children with these conditions.
- The study's results can inform the development of age-specific quality of life questionnaires for this patient group.
Background:
Very few studies have evaluated the quality of life (QoL) of children suffering from low-flow vascular malformations. This is the first study investigating the influencing factors.
Objectives:
To identify the factors influencing QoL in children with low-flow vascular malformations.
Methods:
We conducted a qualitative study employing focus group interviews (Clinical Trials Number: NCT03440827). The study was a prospective, interventional, non-comparative, multicentre study performed in four expert centres for vascular anomalies. Qualitative data about personal experiences, feelings, difficulties, needs and various factors influencing behaviours were collected. Theme-based content analysis (manual and specialist textural software guided) were used to analyse the verbatim transcripts of all focus group sessions. Manual qualitative discourse analysis was performed to identify the different themes and categories. Informatics' analyses were subsequently performed for each individual category.
Results:
Ten focus groups (26 individuals including 10 children aged 11 to 15 years) were conducted until saturation. Influencing factors were related to 4 categories: medical care, self-image, social impact on daily activities and challenging social relationships. These factors were responsible for intrafamily upheavals and may lead to future identity-building problems.
Conclusions:
This study provides an essential framework from which physicians can develop strategies to improve patient care and quality of life. These data may also be useful to develop specific age-sensitive QoL questionnaires.
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