RESUMEN
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.
Asunto(s)
Anomalías Linfáticas/terapia , Escleroterapia/estadística & datos numéricos , Adolescente , Antineoplásicos/uso terapéutico , Niño , Estudios Transversales , Femenino , Humanos , Anomalías Linfáticas/psicología , Masculino , Picibanil/uso terapéutico , Calidad de Vida , Estudios Retrospectivos , Escleroterapia/psicologíaRESUMEN
PURPOSE: There is paucity of data on patient-perceived outcomes of bleomycin sclerotherapy for low-flow vascular malformations. In this study, the long-term outcomes of bleomycin sclerotherapy were investigated in terms of quality of life (QoL) and patient-perceived changes in health. MATERIALS AND METHODS: A cohort of Dutch patients with vascular malformations treated with bleomycin sclerotherapy (June 2010-November 2015) completed a questionnaire evaluating disease symptoms, QoL (Short Form 36), patient-perceived change in health status (Global Rating of Change scales) and treatment satisfaction. QoL was assessed for the patient's status before and after treatment and was analyzed relative to an age and sex-matched Dutch reference population. Predictive factors associated with QoL and patient-perceived improvement in overall health status were assessed using multivariable linear and logistic regression analyses, respectively. RESULTS: Seventy-seven patients, with a median follow-up of 22 months, were enrolled. About half of the respondents (49.3%) indicated that they perceived (any form of) improvement in their overall health status. Most often improved were the specific health aspects 'pain' (54.5%) and 'overall severity of symptoms' (57.1%). No factors were significantly predictive for patient-perceived improvement in health with respect to the vascular malformation. Impairment in work- or study-related activities prior to sclerotherapy was found to negatively impact physical QoL at follow-up (p = 0.03). CONCLUSION: Approximately half of patients with low-flow vascular malformations indicate an improvement in overall health status following bleomycin sclerotherapy, particularly concerning pain and severity of symptoms. However, most patients only perceived little to moderate improvement to their health and desire further treatment.
Asunto(s)
Bleomicina/administración & dosificación , Anomalías Linfáticas/terapia , Satisfacción del Paciente , Calidad de Vida/psicología , Escleroterapia/métodos , Malformaciones Vasculares/terapia , Adulto , Estudios de Cohortes , Femenino , Estudios de Seguimiento , Humanos , Anomalías Linfáticas/psicología , Masculino , Persona de Mediana Edad , Países Bajos , Pronóstico , Estudios Retrospectivos , Escleroterapia/psicología , Encuestas y Cuestionarios , Resultado del Tratamiento , Malformaciones Vasculares/psicologíaRESUMEN
BACKGROUND: This study was designed to investigate the psychosocial impact on the family of a child with a vascular birthmark and examine the role of the general practitioner in meeting the family's needs. METHOD: Nineteen families were interviewed with a questionnaire before their assessment at the Sydney Children's Hospital (New South Wales) Vascular Birthmarks Clinic. RESULTS: Sixty-eight percent of parents overestimated the size of their child's lesion when asked to draw it; 15% said some lifestyle modifications had to be made to accommodate their child's condition; 63% were concerned about their child being teased at school; and 36% had issues of self blame and embarrassment. Expectations from the clinic included information (68%), treatment (47%) and reassurance (26%). CONCLUSION: Vascular birthmarks are common. Treatment strategies are improving, but there is a need to adequately address the psychosocial impact that these lesions have, both on parents and children. The GP is the carer best placed to meet these needs.