Life quality of children suffering with haemophilia

Postgraduate Thesis uoadl:2819686 274 Read counter

Unit:
Κατεύθυνση Κλινική Παιδιατρική & Νοσηλευτική - Έρευνα
Library of the School of Health Sciences
Deposit date:
2018-11-30
Year:
2018
Author:
Panagiotopoulou Konstantina
Supervisors info:
Ευαγγελία Χαρμανδάρη, Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Τζουμάκα-Μπακούλα Χρυσάνθη, Ομότιμη Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Χρούσος Γεώργιος, Ομότιμος Καθηγητής, Ιατρική Σχολή, ΕΚΠΑ
Original Title:
Ποιότητα ζωής παιδιών με αιμορροφιλία
Languages:
Greek
Translated title:
Life quality of children suffering with haemophilia
Summary:
Purpose: This study aims to determine the perceived life quality of children suffering from haemophilia.
Sample and Method: Forty-seven children aged 4-16 years attending the Haemophilia Center of "Aghia Sophia" Children's Hospital were recruited prospectively to participate in the study. The data collection method is the certified for the Greek version – specialized for the disease- Haemo-QoL Children I, II and III questionnaires, which are age-specific. The study was performed during the second quarter of 2018.
The demographic characteristics of the patients and the initial basic questions of the Haemo - QoL Children I, II, III questionnaires were presented with descriptive statistics mainly concerning the absolute and percentage distribution of frequencies. Ratings for life quality range from 0 (best quality of life) to 100 (poorest quality of life). A psychometric assessment was performed, a Cronbach's α test based on a 12-subscale test with a factor of > 0,7 showing satisfactory reliability. For each quantitative study variable, the mean value, the standard deviation and the percentage as the numerical description are calculated. Regarding the life quality resulting from the scores of the scales and from the overall scores, their qualitative evaluation was performed, the comparisons of the scores of the scales with variables related to the clinical picture were made either with the t-test for independent samples where there were two groups (e.g. haemarthrosis or the severity of the disease) and by spreading analysis in cases there were more than two groups (grading of the haemarthrosis backgroung). The significance level was set at p = 0.05.
Results: Based on the average values for all questionnaire questions, the quality of life of haemophiliac children in the sample is quite satisfactory, with somewhat poorer scores observed in the age group I (4-7 years). In the age group III (13-16 years), the poorest scores are in the "SPORTS / SCHOOL" scale. The same applies to the age group II (8-12 years), while in the age group I (4-7 years) the poorest scores are in the ranges "FAMILY" and "TREATMENT". The correlations between children with or without haemarthrosis over the last 12 months showed a statistically significant difference with the children who experienced haemarthrosis, lowering their life quality. However, the relationship between children with differential severity of haemophilia showed that children with severe haemophilia have a better quality of life.
Conclusions: The lower quality of life in haemophiliac children is directly correlated with the presence of haemorrhages. Early onset of precaution in children with severe haemophilia improves the quality of life as it reduces the number of haemorrhages.
Main subject category:
Health Sciences
Keywords:
Haemophilia, Children, Haemo-QoL, Quality of life, Greece
Index:
No
Number of index pages:
0
Contains images:
Yes
Number of references:
79
Number of pages:
131
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