Risk Factors for Poor Health‐Related Quality of Life in Adolescents with Epilepsy

Abstract

Summary:Purpose: To examine potential risk factors for poor health-related quality of life (HRQOL) among adolescents with epilepsy by using the newly developed QOLIE-AD-48. Risk factors were derived from sociodemographic, social, academic, and epilepsy-and health-related domains.Methods: The QOLIE-AD-48 was administered to 197 English-speaking adolescents (age 11-17 years from >20 sites in the United States and in Canada). The self-report instrument yields an overall HRQOL score and eight subscale scores. Other data were obtained from family interviews, physician reports, and health records. Multiple regression analyses were conducted to study risk factors for impairment of HRQOL.Results: Older adolescents (age 14-17 years), those with more severe epilepsy and more symptoms of neurotoxicity, and those living in households with lower socioeconomic status were more likely to report poor overall HRQOL. Risk factors in the eight HRQOL domains were found as follows: (a) Epilepsy Impact: older age in adolescence, more severe epilepsy and neurotoxicity, more hospitalizations during the past year, and fewer hours of extracurricular activities; (b) Memory and Concentration: longer duration of epilepsy, special education classes, and history of repeating a grade in school; (c) Attitude Toward Illness: older age, female gender, and more severe epilepsy and neurotoxicity; (d) Social Support: younger age, male gender, and fewer hospitalizations in the last year; (e) Stigma: lower socioeconomic status and special-education classes; and (0 Health Perceptions: older age, female gender, and lower socioeconomic status. None of the factors examined was significantly associated with HRQOL in (g) Physical Functioning or (h) School Behavior subscales.Conclusions: We identified several risk factors for poor HRQOL outcomes in adolescents with epilepsy. Age, increased seizure severity, and neurotoxicity were most consistently associated with poor HRQOL across domains. Older adolescents, independent of epilepsy severity, reported worse overall HRQOL than did their younger counterparts. Older adolescents also were more likely to perceive a greater negative impact on life and general health, and had more negative attitudes toward epilepsy. Adolescent boys and girls may show different sensitivities to various quality-of-life domains. Key Words: HRQOL-Adolescents-QOLIE-AD-48.Adolescence, the transition from childhood to adulthood, is a period marked by puberty, novelty seeking, sexual and social identification, and solidifying personality traits. In this turbulent and fragile life stage, a chronic medical disorder, such as epilepsy, can stigmatize, and impair independence, social functions, peer relations, self-esteem, mood, and cognition (1-5). Adolescents with epilepsy have a higher frequency of behavioral problems than do healthy or chronically ill con-

Quality of Life in Childhood Epilepsy: The Role of an Education Program on the Disease

“…Bu da çocuklar kadar ailelere de eğitim ve destek verilmesinin önemini vurgulamaktadır (3,4). Epilepsi sadece hastalarda değil, yakınlarında da anksiyete bozuklukları ve depresyona yol açabilmektedir (10).…”

“…Bunlar; nöbetlerin ağırlığı, düşük sosyoekonomik durum, kısıtlı sosyal ilişkiler ve nörobilişsel problemlerdir (4). Tıbbi tedaviye uyumdaki zorluklar da, epilepsi ile yaşamaya psikolojik olarak tam anlamıyla uyum sağlanamamasının sonuçları olabilir (7).…”

“…Epilepsinin neden olduğu düşük yaşam kalitesi, kısmen devam eden nöbetlere bağlı olsa da, tüm bunlardan bağımsız olarak eş zamanlı depresyon ve anksiyete gibi komorbid afektif bozukluklardan da etkilenir (3,4,10 Epilepsi, çocuk ve adölesanlar için genellikle kötü psikososyal sonuçlar doğurmaktadır. Bu hastalar ve ailelerine verilebilecek eğitimler ile ilgili yeterli girişim ve çalışma yoktur.…”

“…Bireysel yaklaşımların, bireysel ihtiyaçlara daha uygun olduğu bilinse de, bu eğitimi sağlayan kişinin zamanı da göz önünde bulundurulduğunda bu yöntem daha masraflıdır (12). Grup eğitimlerinin epilepsi tanısı alan hasta ve aileleri üzerindeki etkileri konusunda yeterli bilgi olmasa da bugüne kadar yapılan çalışmalar potansiyel pozitif etkileri olduğunu düşündürtmektedir (3,4,10,15). Bu nedenle klinisyenler tarafından hastalık ve tedavi hakkında yeterli bilgi verilmeli, hastalığın ve tedaviye uyumun önemi anlatılmalıdır.…”

“…Epilepsi hastalarında en sık karşılaşılan psikolojik problem anksiyete olarak görülmüştür Anksiyete bozukluklarının epilepsi hastalarında araştırıldığı bazı çalışmalar vardır (3,4). Örneğin, Mensah ve ark.…”