Health-related quality of life and impact of haemangiomas on children and their parents

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Summary

Background

Haemangiomas are the most common tumours of infancy, they are often present on the face and can lead to disfigurement. The aim of our study was to assess the health-related quality of life (HRQoL) of children aged 1–15 years with a haemangioma and their parents in comparison with healthy children, and to assess the impact on their life. Furthermore, we investigated if visibility and a complicated course of the haemangioma had influence on these outcomes.

Methods

Age-specific validated HRQoL and haemangioma-specific questionnaires were sent to all children seen at the AMC in Amsterdam at the plastic surgery or dermatology departments.

Results

Two hundred and one parents of children with a haemangioma returned the questionnaire (85%). The majority of parents and patients with a haemangioma are not negatively affected by it. Concerning HRQoL, parents of children aged 8 to 11 years reported their children to have more negative emotions. Children aged 12 to 15 reported a better HRQoL for physical symptoms, and positive emotions. No differences were found in the HRQoL questionnaires between visibility and complicated course. Significant differences occur in the specific haemangioma questionnaire. High scores on feelings of disbelief and panic during the growing phase are given by parents and patients agree with the statement on whether their life would be different without a haemangioma, especially when the haemangioma was visible and/or had a complicated course.

Conclusions

This is the first study to describe the HRQoL of children with haemangiomas. The psychosocial consequences of a haemangioma are feared by physicians and parents. The most important finding of this study is that the majority of children of all ages and their parents feel children with haemangiomas can live a good life. There is reason, however, to believe that having a haemangioma, especially one with a complicated course or a visible location, could result in psychosocial problems later in life, mostly related to physical appearance.

Section snippets

Participants

All patients aged 1 to 15 years with a diagnosis of haemangioma who were seen in 3 years in the Academic Medical Centre of Amsterdam and their parents were enrolled into this study. They consulted the department of dermatology or plastic and reconstructive surgery. These departments serve as a referral centre for haemangiomas and vascular malformations. In general the treatment of haemangiomas in both departments is a ‘wait and see’ policy, with medical treatment or excision if necessary. An

Patients' sample

Of the 298 children seen with a haemangioma, 62 had unknown addresses. Into this study 236 children with a haemangioma were enrolled The male:female ratio is 72 (31%):164 (69%). The questionnaire was returned by 201 parents of children with a haemangioma (85%), 73% of which were female. In the age group 1 to 5 years, 113 parents of children participated, from 6 to 7 years, 27 parents of children, and from 8 to 15 years, 61 children and their parents participated. Some parents (n = 7) filled in

Discussion

This is the first study to describe the HRQoL of children with haemangiomas and their parents using well-developed and validated instruments in different age groups. The results of the present study indicate that having (had) a haemangioma does not negatively influence the HRQoL. Some differences were found for children aged 1–5 years, having more abdominal, pulmonal, and skin problems. These differences are difficult to explain. Possibly parents are more insecure during the first years of

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