HEALTH RELATED QUALITY OF LIFE IN GREEK CHILDREN WITH HAEMOPHILIA AND THEIR CAREGIVERS.
(Abstract release date: 05/19/16)
EHA Library. Papagianni A. 06/09/16; 132548; E999
Dr. Andromachi Papagianni
Contributions
Contributions
Abstract
Abstract: E999
Type: Eposter Presentation
Background
Health-related Quality of Life(HRQoL) has become an important outcome in every day clinical practice.
Aims
The aim of the study was the assessment of health-related quality of life (HRQoL) in children with haemophilia and their caregivers in Greece, using a disease-specific questionnaire and the investigation of demographic and clinical factors that affect their HRQoL.
Methods
The study was conducted in two national pediatric haemophilia centers, in Thessaloniki and Athens [and included 45 children and their parents] The Greek version of the Hemophilia-Specific Quality of Life Index (Haemo-QoL) questionnaire was administered to 45 pediatric patients aged 4 to 16 years and their parents. The latter filled in a questionnaire with demographic data (child’s and parent’s age, residence, number of siblings – whether sick or not, marital status, education level, employment) and clinical data of the patient, namely type of haemophilia, severity, presence or history of inhibitor, type of treatment, number of haemarthrosis over last 12 months, presence of chronic pain). Statistical analysis of the results was performed using SPSS 19.0.
Results
Overall, patients and caregivers had a mean age of 10.46±4.3 and 39.51±7.4 years respectively. 86.7% of patients had haemophilia A and 77.8% were on prophylaxis treatment. HRQoL scores were found to be widely below 40 for children and below 50 for their caregivers in all dimensions.'Family' and 'Treatment' had the highest scores (mean scores 57.7 and 46.2 respectively), suggesting reduced quality of life in these dimensions in age group 4-7. The most impaired domain of Haemo-QoL in age group 8-12 was 'Perceived Support' (mean score 40.63), while the older children were more impaired in 'Family' and 'Treatment', but much less so than the younger ones (mean scores 36.1 in both domains).The least impaired dimensions were 'Self-view', 'Other people' and 'Relationships' among the three groups.Cronbach's alpha coefficient was assessed for every subscale and in total, suggesting sufficient/very good internal consistency reliability of the Greek version of Haemo-QoL.Among Haemo-QoL subscales, 'Perceived Support' in age group 8-12 and 'Sports/School' and 'Relationships' in the adolescent group were found strongly associated with the number of haemarthrosis over the previous 12 months.
Conclusion
The use of a disease specific QoL tool showed that children and their caregivers report a relatively good quality of life, with 'family' and 'treatment' being the most impaired especially in the younger age group. The number of haemarthrosis over the previous year is a clinical characteristic which impairs some of the aspects of quality of life, especially in the adolescent group. These data are important for the future planning of treatment regimens as well as the psychological support of patients and their families.
Session topic: E-poster
Keyword(s): Children, Hemophilia, Quality of life
Type: Eposter Presentation
Background
Health-related Quality of Life(HRQoL) has become an important outcome in every day clinical practice.
Aims
The aim of the study was the assessment of health-related quality of life (HRQoL) in children with haemophilia and their caregivers in Greece, using a disease-specific questionnaire and the investigation of demographic and clinical factors that affect their HRQoL.
Methods
The study was conducted in two national pediatric haemophilia centers, in Thessaloniki and Athens [and included 45 children and their parents] The Greek version of the Hemophilia-Specific Quality of Life Index (Haemo-QoL) questionnaire was administered to 45 pediatric patients aged 4 to 16 years and their parents. The latter filled in a questionnaire with demographic data (child’s and parent’s age, residence, number of siblings – whether sick or not, marital status, education level, employment) and clinical data of the patient, namely type of haemophilia, severity, presence or history of inhibitor, type of treatment, number of haemarthrosis over last 12 months, presence of chronic pain). Statistical analysis of the results was performed using SPSS 19.0.
Results
Overall, patients and caregivers had a mean age of 10.46±4.3 and 39.51±7.4 years respectively. 86.7% of patients had haemophilia A and 77.8% were on prophylaxis treatment. HRQoL scores were found to be widely below 40 for children and below 50 for their caregivers in all dimensions.'Family' and 'Treatment' had the highest scores (mean scores 57.7 and 46.2 respectively), suggesting reduced quality of life in these dimensions in age group 4-7. The most impaired domain of Haemo-QoL in age group 8-12 was 'Perceived Support' (mean score 40.63), while the older children were more impaired in 'Family' and 'Treatment', but much less so than the younger ones (mean scores 36.1 in both domains).The least impaired dimensions were 'Self-view', 'Other people' and 'Relationships' among the three groups.Cronbach's alpha coefficient was assessed for every subscale and in total, suggesting sufficient/very good internal consistency reliability of the Greek version of Haemo-QoL.Among Haemo-QoL subscales, 'Perceived Support' in age group 8-12 and 'Sports/School' and 'Relationships' in the adolescent group were found strongly associated with the number of haemarthrosis over the previous 12 months.
Conclusion
The use of a disease specific QoL tool showed that children and their caregivers report a relatively good quality of life, with 'family' and 'treatment' being the most impaired especially in the younger age group. The number of haemarthrosis over the previous year is a clinical characteristic which impairs some of the aspects of quality of life, especially in the adolescent group. These data are important for the future planning of treatment regimens as well as the psychological support of patients and their families.
Session topic: E-poster
Keyword(s): Children, Hemophilia, Quality of life
Abstract: E999
Type: Eposter Presentation
Background
Health-related Quality of Life(HRQoL) has become an important outcome in every day clinical practice.
Aims
The aim of the study was the assessment of health-related quality of life (HRQoL) in children with haemophilia and their caregivers in Greece, using a disease-specific questionnaire and the investigation of demographic and clinical factors that affect their HRQoL.
Methods
The study was conducted in two national pediatric haemophilia centers, in Thessaloniki and Athens [and included 45 children and their parents] The Greek version of the Hemophilia-Specific Quality of Life Index (Haemo-QoL) questionnaire was administered to 45 pediatric patients aged 4 to 16 years and their parents. The latter filled in a questionnaire with demographic data (child’s and parent’s age, residence, number of siblings – whether sick or not, marital status, education level, employment) and clinical data of the patient, namely type of haemophilia, severity, presence or history of inhibitor, type of treatment, number of haemarthrosis over last 12 months, presence of chronic pain). Statistical analysis of the results was performed using SPSS 19.0.
Results
Overall, patients and caregivers had a mean age of 10.46±4.3 and 39.51±7.4 years respectively. 86.7% of patients had haemophilia A and 77.8% were on prophylaxis treatment. HRQoL scores were found to be widely below 40 for children and below 50 for their caregivers in all dimensions.'Family' and 'Treatment' had the highest scores (mean scores 57.7 and 46.2 respectively), suggesting reduced quality of life in these dimensions in age group 4-7. The most impaired domain of Haemo-QoL in age group 8-12 was 'Perceived Support' (mean score 40.63), while the older children were more impaired in 'Family' and 'Treatment', but much less so than the younger ones (mean scores 36.1 in both domains).The least impaired dimensions were 'Self-view', 'Other people' and 'Relationships' among the three groups.Cronbach's alpha coefficient was assessed for every subscale and in total, suggesting sufficient/very good internal consistency reliability of the Greek version of Haemo-QoL.Among Haemo-QoL subscales, 'Perceived Support' in age group 8-12 and 'Sports/School' and 'Relationships' in the adolescent group were found strongly associated with the number of haemarthrosis over the previous 12 months.
Conclusion
The use of a disease specific QoL tool showed that children and their caregivers report a relatively good quality of life, with 'family' and 'treatment' being the most impaired especially in the younger age group. The number of haemarthrosis over the previous year is a clinical characteristic which impairs some of the aspects of quality of life, especially in the adolescent group. These data are important for the future planning of treatment regimens as well as the psychological support of patients and their families.
Session topic: E-poster
Keyword(s): Children, Hemophilia, Quality of life
Type: Eposter Presentation
Background
Health-related Quality of Life(HRQoL) has become an important outcome in every day clinical practice.
Aims
The aim of the study was the assessment of health-related quality of life (HRQoL) in children with haemophilia and their caregivers in Greece, using a disease-specific questionnaire and the investigation of demographic and clinical factors that affect their HRQoL.
Methods
The study was conducted in two national pediatric haemophilia centers, in Thessaloniki and Athens [and included 45 children and their parents] The Greek version of the Hemophilia-Specific Quality of Life Index (Haemo-QoL) questionnaire was administered to 45 pediatric patients aged 4 to 16 years and their parents. The latter filled in a questionnaire with demographic data (child’s and parent’s age, residence, number of siblings – whether sick or not, marital status, education level, employment) and clinical data of the patient, namely type of haemophilia, severity, presence or history of inhibitor, type of treatment, number of haemarthrosis over last 12 months, presence of chronic pain). Statistical analysis of the results was performed using SPSS 19.0.
Results
Overall, patients and caregivers had a mean age of 10.46±4.3 and 39.51±7.4 years respectively. 86.7% of patients had haemophilia A and 77.8% were on prophylaxis treatment. HRQoL scores were found to be widely below 40 for children and below 50 for their caregivers in all dimensions.'Family' and 'Treatment' had the highest scores (mean scores 57.7 and 46.2 respectively), suggesting reduced quality of life in these dimensions in age group 4-7. The most impaired domain of Haemo-QoL in age group 8-12 was 'Perceived Support' (mean score 40.63), while the older children were more impaired in 'Family' and 'Treatment', but much less so than the younger ones (mean scores 36.1 in both domains).The least impaired dimensions were 'Self-view', 'Other people' and 'Relationships' among the three groups.Cronbach's alpha coefficient was assessed for every subscale and in total, suggesting sufficient/very good internal consistency reliability of the Greek version of Haemo-QoL.Among Haemo-QoL subscales, 'Perceived Support' in age group 8-12 and 'Sports/School' and 'Relationships' in the adolescent group were found strongly associated with the number of haemarthrosis over the previous 12 months.
Conclusion
The use of a disease specific QoL tool showed that children and their caregivers report a relatively good quality of life, with 'family' and 'treatment' being the most impaired especially in the younger age group. The number of haemarthrosis over the previous year is a clinical characteristic which impairs some of the aspects of quality of life, especially in the adolescent group. These data are important for the future planning of treatment regimens as well as the psychological support of patients and their families.
Session topic: E-poster
Keyword(s): Children, Hemophilia, Quality of life
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