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Published on: September 19, 2019
The Quality of Life in Patients with Familial Mediterranean Fever and Their Parents Perception
Esra Ensari1, Esra Nagehan Akyol Onder2, Oznur Bilac3
1Department of Pediatric Nephrology, Celal Bayar University School of Medicine, Manisa, Turkey.
Insights
Familial Mediterranean fever (FMF) significantly impacts children's quality of life (QoL), with disease severity being a key factor. Understanding these impacts is crucial for effective FMF patient management.
Area of Science:
- Pediatric Rheumatology
- Genetics
- Quality of Life Research
Background:
- Familial Mediterranean fever (FMF) is a chronic autoinflammatory disease causing recurrent fever and polyserositis.
- Assessing the quality of life (QoL) in children with FMF is essential for comprehensive patient care.
Purpose of the Study:
- To evaluate the quality of life (QoL) in children with Familial Mediterranean fever (FMF), considering both child and parent perspectives.
- To investigate the correlation between clinical variables and the perceived QoL in pediatric FMF patients.
Main Methods:
- A cohort of 107 children diagnosed with FMF was studied.
- Pediatric Quality of Life Inventory (PedsQL) was used to assess QoL.
- Demographic, genetic data, and disease severity were analyzed.
Main Results:
- QoL scores showed an inverse correlation with FMF severity (mild cases: 97±4, moderate: 76±11, severe: 52±10.3).
- Disease severity, treatment adherence, healthcare use, genetic mutations, family income, and maternal age significantly influenced QoL (p<0.001).
- Parents reported lower QoL in children facing adverse factors like low income, smoking, frequent attacks, and irregular medication (p<0.001).
Conclusions:
- FMF substantially affects children's daily activities, academic performance, and family functioning.
- Physicians should consider QoL changes in FMF management.
- Optimizing medical therapy, patient education, and psychosocial support is vital for improving QoL in FMF patients.
Background:
Familial Mediterranean fever (FMF) is a chronic disease characterized by recurrent episodes of fever and polyserositis. This study aimed to assess children's quality of life (QoL), as reported by children and their parents, and to compare the results according to clinical variables.
Material And Methods:
The study examined 107 children with FMF, evaluating their demographic and genetic data, utilizing the Pediatric Quality of Life Inventory (PedsQL) to assess QoL, and comparing scores based on disease severity.
Results:
The severity of FMF is inversely correlated with QoL scores, with mild cases having the highest scores (97±4), followed by moderate (76±11) and severe cases (52±10.3) (p<0,001). Disease severity, treatment adherence, healthcare utilization, genetic mutations, family income, and maternal age at birth all significantly impact perceived quality of life in FMF patients (p<0,001). Additionally, parents reported lower QoL for children with FMF who experienced various adverse factors such as low family income, household smoking, frequent attacks, hospitalizations, irregular medication use, and low maternal education levels (p<0,001).
Conclusion:
Children's daily activities, academic performance, and family functioning are all significantly impacted by FMF. Physicians caring for patients with FMF should be aware of the QoL changes in the management of these patients. As a result, medical therapy, patient education, and indicators of psychological and social support can all be offered more effectively.
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