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A prospective study of quality of life in amyotrophic lateral sclerosis patients
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
Neurology, Clinical Neuroscience, Sahlgrenska Universitetssjukhus, Göteborg, Sweden.ORCID-id: 0000-0003-1737-3359
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
2017 (Engelska)Ingår i: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 136, nr 6, s. 631-638Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

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.

Ort, förlag, år, upplaga, sidor
2017. Vol. 136, nr 6, s. 631-638
Nyckelord [en]
amyotrophic lateral sclerosis, emotional well-being, physical function, quality of life
Nationell ämneskategori
Klinisk medicin
Identifikatorer
URN: urn:nbn:se:uu:diva-327077DOI: 10.1111/ane.12774ISI: 000414488000007PubMedID: 28523721OAI: oai:DiVA.org:uu-327077DiVA, id: diva2:1129278
Tillgänglig från: 2017-08-02 Skapad: 2017-08-02 Senast uppdaterad: 2018-02-19Bibliografiskt granskad

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Jakobsson Larsson, BirgittaNordin, KarinNygren, Ingela

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