Long‐term health‐related quality of life in children with lymphatic malformations treated with sclerotherapy generally matched age‐appropriate standardised population norms

Abstract

Aim: We assessed the long-term health-related quality of life (HRQoL) of children who received sclerotherapy for lymphatic malformations. This treatment involved injecting drugs into the blood vessels to make them shrink. Methods:Our cross-sectional study retrospectively reviewed patients who received OK-432 sclerotherapy injections at Karolinska University Hospital, Stockholm, Sweden, from 1998 to 2013. We studied 49 patients (63% female) aged 8-18 at least five years after their first injection. HRQoL was assessed with the KIDSCREEN-52 questionnaire and a study-specific questionnaire addressed disease consequences and patient satisfaction. We determined associations between HRQoL and disease and treatment and the patient's sex.Results: Overall HRQoL paralleled age-appropriate norms in the general population, but some subgroups had lower levels. Regression-based estimates showed that larger numbers of injections were negatively associated with HRQoL in the dimensions autonomy, parent relations and home life, financial resources and school environment (p = 0.01-0.03). Malformations in the head and neck area were negative predictors across dimensions and were strongest for psychological well-being (p = 0.009), parent relations and home life (p = 0.017) and school environment (p = 0.006). Conclusion:Despite generally positive outcomes, multiple injections and malformations in the head and neck were associated with impaired HRQoL.

Oral lymphatic malformations: A multicenter study of 208 cases and literature review

“…5,25 Most OLM cases become clinically evident until the age of two, but small and asymptomatic lesions may receive a later diagnosis. 3,5,6,12,14,21,22,27,39,43,44 Data from the multicenter study and the case report studies corroborate these findings, since children and adolescents presented larger OLMs than did adults or elderly individuals. This may also be the reason for such different mean ages among case series studies.…”

Congenital Vascular Malformations in Children: From Historical Perspective to a Multidisciplinary Approach in the Modern Era—A Comprehensive Review

“…In both summary scores, a score of 50 corresponded to the average score of the general population. Another study used the KIDSCREEN questionnaire and measured HRQOL at least five years after sclerotherapy, which resulted in values that paralleled age-appropriate norms [92]. Currently, studies more often incorporate HRQOL assessment into their response evaluation [93].…”

“…Factors reported to be associated with an impaired HRQOL included invasive treatment, the number of sclerotherapy procedures, age at first treatment, and anatomical location, either in the head and neck region or in the lower extremity [88,89,92]. No specific CVM subtype seems to be independently associated with an impaired HRQOL [88,[95][96][97], although some studies suggest worse HRQOL in complex CVMs associated with other anomalies [89,98].…”