Factors influencing quality of life in children with low‐flow vascular malformations: a qualitative study using focus groups

Abstract

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.

cLFM‐Qol: A specific quality of life measurement tool for children from 11 to 15 years with low‐flow malformations

“…cLFM‐QoL has a single dimension, but all four categories (medical care, self‐image, social impact on daily activities and challenging social relationships) reported in the FGs interviews were represented 16 . Intriguingly, we noticed that the deleted items (lack of global discriminatory effects) were related to intra familial relation and functioning.…”

“…cLFM-QoL has a single dimension, but all four categories (medical care, self-image, social impact on daily activities and challenging social relationships) reported in the FGs interviews were represented. 16 Intriguingly, we noticed that the deleted items (lack of global discriminatory effects) were related to intra familial relation and functioning. We can hypothesize that the context in which the questionnaire was filled (filling in of the questionnaire at home, possibly with help from the parents) was different from the context of the FGs (conducted while parents were away) and may have therefore influenced the responses.…”

“…Patient input was obtained during a previous qualitative phase using FGs and described elsewhere 16 : briefly, a theme‐based content analysis of 10 focus groups including 26 patients allowed us to develop an exhaustive list of 139 burdens of disease issues. From this list, a group of experts (eight dermatologists, one1 pharmacist, one psychologist, a vascular doctor and a methodologist) produced a 32‐item preliminary questionnaire.…”

“…These factors were related to medical care, selfimage, social impact on daily activities and relationships with others/emotional experiences. 16 The particular impact of LFMs in childhood/early adolescence may be explained by the fact that these periods of life are vulnerable. Because the body image is changing during adolescence, a chronic disease with visible anomalies has a strong impact.…”

Publication Trends of Qualitative Research in Dermatology

“…Figure 1 shows the PRISMA flow diagram of the selection criteria. A total of 1398 studies were screened, and 249 studies (17.8%) were ultimately included in the database …”