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- Åkerblom, Ylva, 1967-
(författare)
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Experiences of pain and associations between pain, disease severity and individual quality of life in people with motor neuron diseases
- 2019
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Many people with the incurable and often times fatal motor neuron diseases have pain, but there is lack of knowledge about people’s experiences of living with pain. Further, the correlation between pain and their quality of life is not well understood, and previous studies have not used individual quality of life, namely that people with their own words express what quality of life is. The aim of these studies was to explore the experiences of pain and the association between pain and quality of life in people with MND.Methods: Study I was explorative about the individual experience of pain, while study II was correlational between pain, pain severity, disease severity and IQOL. Study I was qualitative, whereas study II used both qualitative and quantitative analysis.Results and conclusions: People with motor neuron diseases experienced pain to have multiple characteristics and impact. However, the results emphasise that the individual experienced some pain characteristics as difficult and that pain could worsen functions that were already affected by the disease. The experience was also that it could be challenging to manage pain. However, the symptom of pain could pass unnoticed in contacts with healthcare professionals (study I). The three most important areas for individual quality of life in both participants with and without pain were: Social relations, followed by Activities for amusement and relaxations, and Being in the outdoor environment. Individual quality of life was noticed to be good regardless of pain. Pain and pain severity were not found to be associated with satisfaction of individual quality of life in patients with motor neuron diseases, neither was disease severity. The results support previous findings, that strong associations between symptoms of MND and IQoL are not obvious. However, this does not infer that pain in people with MNDs should be neglected and undertreated. On the contrary, it seems to be important for healthcare to pay more attention to pain in people with motor neuron diseases and that pain continuously is measured, individually treated and followed. Regardless of whether persons with MND have pain or not, the results point to the importance of healthcare professionals providing support to not only the patient but also the patient’s family and friends, as well as assisting in various forms of relaxing activities and possibility of being in the outdoor environment.
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| 2. |
- Åkerblom, Ylva, 1967-, et al.
(författare)
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Pain, disease severity and associations with individual quality of life in patients with motor neuron diseases
- 2021
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Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 20
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Tidskriftsartikel (refereegranskat)abstract
- Background: Up to 85% of people with motor neuron disease (MND) report pain, but whether pain has negative impact on quality of life is unclear. The aim was to study associations between pain, disease severity and individual quality of life (IQOL) in patients with MND.Methods: In this cross sectional study, 61 patients were recruited from four multidisciplinary teams in Sweden, whereof 55 responded to the pain measure (The Brief Pain Inventory – Short form) and were included in the main analyses. Disease severity was measured with the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised Version, and individual quality of life was measured with a study-specific version of the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting.Results: Forty-one (74%) of the participants who answered BPI-SF (n = 55) reported pain. Thirty-nine (71%) of those reported pain during the past 24 h. The severity of pain was on average moderate, with eight participants (14%) reporting severe pain (PSI ≥ 7). Satisfaction with IQOL for the entire sample was good (scale 1-7, where 1 equals poor quality of life): median 5, interquartile range (IQR) 2.75 and there was no difference in satisfaction with IQOL between those reporting pain/not reporting pain (median 5, IQR 2/median 5, IQR 3.5, Mann-Whitney U = 249, p = 0.452). There was neither any correlation between pain severity and satisfaction with IQOL, nor between disease severity and satisfaction with IQOL.Conclusions: The results add to the hypothesis that associations between non-motor symptoms such as pain prevalence and pain severity and IQOL in MND are weak. Pain prevalence was high and the results pointed to that some participants experienced high pain severity, which indicate that pain assessments and pain treatments tailored to the specific needs of the MND population should be developed and scientifically evaluated.
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| 3. |
- Spörndly-Nees, Sören, et al.
(författare)
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Pain in patients with motor neuron disease : Variation of pain and association with disease severity, health-related quality of life and depression – A longitudinal study
- 2023
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523.
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesTo 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.MethodsA 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).ResultsParticipants 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 resultsGreat 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.
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