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A prospective study of quality of life in amyotrophic lateral sclerosis patients.
Jakobsson Larsson, B; Ozanne, A G; Nordin, K; Nygren, I.
Afiliación
  • Jakobsson Larsson B; Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala, Sweden.
  • Ozanne AG; Neurology, Clinical Neuroscience, Sahlgrenska Universitetssjukhus, Göteborg, Sweden.
  • Nordin K; Department of Global Health and Primary Care, Uppsala University, Uppsala, Sweden.
  • Nygren I; Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala, Sweden.
Acta Neurol Scand ; 136(6): 631-638, 2017 Dec.
Article en En | MEDLINE | ID: mdl-28523721
OBJECTS: The aim of this prospective and longitudinal study was to describe individual quality of life in patients with amyotrophic lateral sclerosis (ALS) and its correlations with physical function and emotional well-being from diagnosis and over time. MATERIALS AND METHODS: Thirty-six patients were included in the study. Individual quality of life was measured with the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), illness severity was assessed using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R), and emotional distress was measured using the Hospital Anxiety and Depression Scale (HADS). Data were collected from diagnosis and thereafter, every six months for a period of two years. Twelve patients completed the 24-month follow-up. RESULTS: Family, friends and own physical health were important for overall quality of life, from diagnosis and during the disease progression. Most patients had good quality of life, which remained stable, despite changed physical functions. Several patients scored above the cut-off score for doubtful and clinical anxiety and depression early on after diagnosis, and there was a significant decrease in anxiety over time. Soon after diagnosis, there was a correlation between depression and quality of life. CONCLUSION: The family, social relations and own physical health are important for overall quality of life in patients with ALS. Thus, supporting the family and facilitating so that patients can continue to stay in contact with friends are important aspects during the disease. Conducting an early screening for depression can be important for preventing decreased quality of life.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Esclerosis Amiotrófica Lateral Tipo de estudio: Observational_studies / Risk_factors_studies Aspecto: Patient_preference Límite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Acta Neurol Scand Año: 2017 Tipo del documento: Article País de afiliación: Suecia Pais de publicación: Dinamarca
Texto completo
Añadir a Mi BVS
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XML
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Esclerosis Amiotrófica Lateral Tipo de estudio: Observational_studies / Risk_factors_studies Aspecto: Patient_preference Límite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Acta Neurol Scand Año: 2017 Tipo del documento: Article País de afiliación: Suecia Pais de publicación: Dinamarca