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  • 1.
    Åkerblom, Ylva
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Experiences of pain and associations between pain, disease severity and individual quality of life in people with motor neuron diseases2019Licentiate thesis, comprehensive summary (Other academic)
    Abstract [en]

    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.

  • 2.
    Åkerblom, Ylva
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Zetterberg, Lena
    Jakobsson Larsson, Birgitta
    Nyholm, Dag
    Nygren, Ingela
    Åsenlöf, Pernilla
    Pain, disease severity and associations with individual quality of life in patients with motor neuron diseasesManuscript (preprint) (Other academic)
    Abstract [en]

    Background Up to 85% of people with motor neuron diseases (MNDs) report pain, but whether pain is correlated to 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 Sixty-one patients were recruited from four multidisciplinary teams in the middle of Sweden, whereof 55 responded to The Brief Pain Inventory – Short form. Disease severity were measured with the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised Version. Individual quality of life was measured with a study-specific version of the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting. The data was collected once and qualitative analysis and non-parametric statistical analyses were applied. 

    Results Forty-one of 55 participants (74 %) reported pain. The participants nominated in total 19 areas important for their IQoL. The three most important areas nominated by both participants with and without pain were Social relations n = 35/12 (participants with pain/without pain), amusement and relaxation (23/4)and being in the outdoor environment (12/7). The satisfaction of 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 with pain/without 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 IQoL (rs=-0.007, p=0.961), nor between the separate functions representing disease severity and IQoL (bulbar functions and IQOL rs = .087, p =.505, fine motor functions and IQoL rs = .101, p= .44, gross motor functions and IQOL rs = .181, p= .163, and respiratory functions and IQoL rs = .069, p = .598).

     

    Conclusions

    Pain was not associated with satisfaction of IQoL in patients with MNDs, neither were 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.

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