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2024 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 22, no 5, p. 1150-1157Article in journal (Refereed) Published
Abstract [en]
Objectives
To describe levels of pain over time during disease progression in individual patients and for a total sample of patients with motor neuron disease (MND), respectively, and to examine associations between pain, disease severity, health-related quality of life (HRQOL), and depression.
Methods
A prospective cohort study was conducted on 68 patients with MND, including data collected on five occasions over a period of 2 years. Pain was assessed using the Brief Pain Inventory – Short Form. Depression was assessed using the Amyotrophic Lateral Sclerosis (ALS)-Depression-Inventory (ADI-12). Disability progression was measured using the Amyotrophic Lateral Sclerosis Functional Rating Scale – Revised Version (ALSFRS-R). HRQOL was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-5).
Results
Participants reported great individual variation over time. The median level of pain was 4 (min 0 and max 10). Higher levels of pain during the last 24 h were associated with higher depression scores (ADI-12), poorer quality of life (ALSAQ-5), and lower reporting of fine and gross motor skills (ALSFRS-R). Baseline pain levels did not predict future values of depression and function. Individuals reporting average pain >3 experienced more hopelessness toward the future and reported higher depression scores compared with participants reporting average pain <3.
Significance of results
Great within-individual variation of pain intensity was reported. Pain intensity was associated with depression, function and HRQOL cross-sectionally, but it did not have a strong prognostic value for future depression, function, or HRQOL. Patients with MND should be offered frequent assessment of pain and depressive symptoms in person-centered care, allowing for individualization of treatment.
Place, publisher, year, edition, pages
Cambridge University Press, 2024
Keywords
Amyotrophic lateral sclerosis (ALS), motor neuron disease (MND), palliative diseases, health-related quality of life, depression
National Category
Neurosciences Physiotherapy Neurology
Research subject
Physiotherapy
Identifiers
urn:nbn:se:uu:diva-520310 (URN)10.1017/s1478951523001347 (DOI)001104265900001 ()2-s2.0-85177221054 (Scopus ID)
Funder
Region Uppsala
2024-01-122024-01-122025-03-20Bibliographically approved