ABSTRACT
Introduction:Despite the fact that infantile haemangioma is one of the most common benign tumour of the child, the impact of this pathology on the quality of life of patients and their families has not aroused much interest in health services research. Several tools have been proposed to date to assess this, but there is no Romanian standardised instrument yet. Taking as a model the questionnaire developed and validated in English by Chamlin et al (2015), we translated, culturally adapted and piloted this instrument into Romanian. The questionnaire was administered during two years, between August 2019 and August 2021, to the parents of children with a diagnosis of infantile hemangioma who attended "M. S. Curie" Children's Emergency Hospital, Bucharest, Romania. Inclusion criteria were the diagnosis of infantile hemangioma and children under the age of 24 months. Other comorbidities which may have caused other health impairments were considered as exclusion criteria. Response rate was 100% for all items in the questionnaire. A total of 112 family respondents were included for analysis. Classic psychometric tests were used. Results:Based on the 29 standardized original items, the four scales have Cronbach-alpha values ranging from 0.489 (CSI), 0.609 (PSF), 0.689 (PEF) to 0.719 (CPS). The proposed final Romanian version includes 26 standardised items. The Cronbach-alpha values improve marginally: 0.63 (PSF), 0.67 (CSI), 0.72 (PEF) and 0.733 (0.78) (CPS). Conclusion:We propose the 21-item scale of the IH-QOL-RO as the Romanian version of the IH-QOL®. The instrument has been culturally adapted and is ready to use in paediatric clinics. We recommend the use of IH-QOL-RO in a longitudinal study design as a measure of health-related quality of life and to complete the classical set of psychometric tests with the 48-hour test-retest reliability.
ABSTRACT
Infantile haemangioma (IH) is the most common benign tumour in childhood, with an incidence of 4% to 12%. Aim: to describe the characteristics of infantile haemangioma in a sample of Romanian children <2 years old at diagnosis, types of treatment applied, recorded complications and the response to the therapeutic approach. A two-year prospective case series study (August 2019 to August 2021) was carried out. Sample: 117 patients <24 months of age diagnosed with IH at the Emergency Hospital for Children "Marie Sklodowska Curie", in Bucharest, Romania. Five therapeutic approaches were used: oral treatment with propranolol, local treatment with timolol, surgical treatment, topical treatment with steroids and no treatment ("wait and see"). Recorded factors mentioned in the literature were also present in this study population: female patients-68.4%; phototype I-58%. In 53% of cases, IHs had a head and neck location and 10% developed local complications (traumatic bleeding). The majority of patients (86%) required one type of therapy: oral propranolol (51%). A low relapse rate was recorded (4%). We consider that any child with a vascular anomaly should be referred to a highly specialised medical service for therapeutic approach.
ABSTRACT
Backround:Infantile haemangiomas are the most common benign tumours of the child with clinical manifestations in the first two years of life, which is an additional cause of parents' concerns. Objective:This study describes the first stage in elaborating a specific instrument to evaluate the quality of life of both patients with infantile haemangioma under two years of age and their parents, adapted to the reality of the Romanian context. Methods:Items were generated from a literature review - from both the current generic pediatricians' instruments and specific tools in dermatology for assessing quality of life and the existing consensus among experts - as well as from a qualitative analysis of parents' concerns. The instrument was piloted on a group of patients' relatives. Results:We have developed a 28-item specific infantile haemangioma quality of life questionnaire with four sub-scales to assess physical health, the social function of the child, parents' emotional health and the social function of parents. Demographic data and clinical features (meanings of symptoms and outcomes) that have an impact on the quality of life were obtained. Conclusion:It is important to be able to measure and compare the quality of life of both patients with infantile haemangioma and their parents for adapting the treatment to the specific needs of patients and their family. The effectiveness of new therapeutic options which are especially useful for infants with haemangiomas can be checked by using the questionnaire as a measure of patient-reported outcome. The questionnaire developed by us was well accepted by the patients' parents.
