Assessment of pain and health-related quality of life in slowly progressive neuromuscular disease

Abresch, Richard T.; Carter, Gregory T.; Jensen, Mark P.; Kilmer, David D.

doi:10.1177/104990910201900109

Cited by 136 publications

(112 citation statements)

References 36 publications

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“…In total, five studies assessed the relationship between pain and QoL [6,9,21,30,31]. Of these, one study assessed associations between SF-36 ''bodily pain'' and the other SF-36 indices [31].…”

Section: Painmentioning

confidence: 99%

A systematic review of quality of life in adults with muscle disease

et al. 2011

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We reviewed the literature on how muscle disease affects quality of life compared to healthy controls, and the factors that influence the effects of muscle disease on quality of life. We also wanted to know whether quality of life differed between muscle diseases. We searched online databases and identified 26 relevant studies. The quality of each study was assessed, results sections analysed and a database of factors associated with quality of life developed. We graded the level of evidence supporting the association between each factor and quality of life as inconclusive, moderate or high. Compared to controls, muscle disease compromised quality of life in all areas of functioning. There was little evidence to suggest that quality of life differed significantly between muscle diseases. There was a high level of evidence suggesting that disease severity, pain, fatigue, and mood significantly affect quality of life. There was a moderate level of evidence suggesting that illness perceptions, coping strategies, age and gender affect quality of life. Several factors had an inconsistent level of evidence.

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Section: Painmentioning

confidence: 99%

A systematic review of quality of life in adults with muscle disease

et al. 2011

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“…We were unable to cover the whole range of diseases that fall within this category, and thus focused on three common NMDs (ALS, FSHD, MG) that are representative of different aetiologies (neurodegenerative, neuroimmunological and hereditary) as well as time of onset [early (\20 years, FSHD), mid ([40 years, MG) or late ([55 years, ALS) life] and prognosis. Previous studies have evaluated either single NMDs [22,23,31,32,37] or concentrated on the influence of chronic pain or fatigue on the HRQoL in NMDs [1,20,21]. As mentioned in the introduction, comparisons between these studies are complicated by differences in the study designs and HRQoL-instruments used.…”

Section: Discussionmentioning

confidence: 96%

Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy

et al. 2010

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Neuromuscular disorders are rare diseases with a chronic and debilitating course. Unfortunately, data on the health-related quality of life (HRQoL) in neuromuscular diseases are limited. The objective of this multicentre cross-sectional study was to compare the HRQoL in patients with amyotrophic lateral sclerosis (ALS), facioscapulohumeral muscular dystrophy (FSHD) and myasthenia gravis (MG) and to identify the determinants of the HRQoL in these diseases. We recruited 91 consecutive outpatients with ALS (n = 37), FSHD (n = 17) or MG (n = 37) in seven specialized German health centres. The HRQoL was determined using the 36-Item Short Form Health Survey (SF-36) and the EuroQol (EQ-5D). Independent predictors of the HRQoL were identified using multiple regression analysis. The HRQoL in all domains of the SF-36, except for bodily pain, was significantly reduced. The domains related to physical health (physical functioning, physical role) were most affected. The EQ-5D-index score was most reduced in ALS (0.54) and least reduced in MG (0.89). Independent predictors of a reduced HRQoL were disease severity and depression in ALS, and disease severity, depression, older age and increased body-mass index in MG. The patterns of HRQoL-impairment in neuromuscular disorders share some common features, such as a more pronounced reduction in the HRQoL related to physical health, but there are a number of disease-specific features that should be considered in outcomes of clinical trials and treatment guidelines. In addition to the treatment of motor symptoms, greater attention should be paid to the treatment of depression, which was found to be among the independent predictors of the HRQoL in ALS and MG.

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“…Disabilities such as multiple sclerosis (MS), neuromuscular disease (NMD), and spinal cord injury (SCI) are commonly associated with a number of chronic pain problems, including muscu-loskeletal pain (Abresch, Carter, Jensen, & Kilmer, 2002;Haisma et al, 2007;Kassirer, 2000), neuropathic pain or paresthesias (Ehde et al, 2003;Finnerup, Johannesen, Sindrup, Bach, & Jensen, 2001;Frisbie & Aguilera, 1990;Jensen, Abresch, Carter, & McDonald, 2005;Jensen, Hanley, Turner, & Cardenas, 2004;Siddal & Loeser, 2001), chronic headache (Archibald et al, 1994), and painful tonic spasms (Perkins, Moxley, & Papciak, 1999). Recent evidence has suggested that the majority of patients with these disabilities report chronic painful sensations (Ehde et al, 2003;Jensen et al, 2004;Widerstrom-Noga & Turk, 2003) and that from one fourth to one third report the pain as severe (Ehde et al, 2003;Jensen et al, 2004;Widerstrom-Noga & Turk, 2003).…”

Section: The Present Studymentioning

confidence: 99%

Coping With Chronic Pain Among Younger, Middle-Aged, and Older Adults Living With Neurological Injury and Disease

et al. 2008

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Objective-This article compares use of pain coping strategies among older, middle-aged, and younger adults living with chronic pain and seeks to determine whether the relationship between pain severity and coping is moderated by age.Method-Participants were 464 adults reporting chronic pain secondary to multiple sclerosis, spinal cord injury, or neuromuscular disease. Participants completed a survey including measures of pain severity and the Chronic Pain Coping Inventory.Results-After controlling for clinical and demographic variables, older adults (older than 60) reported a wider range of frequently used strategies and significantly more frequent engagement in activity pacing, seeking social support, and use of coping self-statements than did younger or middleaged adults. Moderation analyses suggest that, for younger adults, efforts at coping generally increased with greater pain severity, whereas this relationship did not exist for older adults.Discussion-These data suggest differences in the quantity and quality of pain coping among age groups. Keywords chronic pain; older adults; SCI; MS; neuromuscular diseaseAging is associated with a number of uncontrollable stressors, including retirement, financial strain, bereavement, changes in social support, and health decline (Aldwin, 1990;Krause, Jay, & Liang, 1991;Murrell, Norris, & Hutchins, 1984). Despite this, most research has demonstrated a decline in perceived stress and increase in well-being with increasing age (e.g., NIH-PA Author ManuscriptNIH-PA Author Manuscript NIH-PA Author Manuscript Aldwin, 1991;Paykel, 1983;Silverman, Eichler, & Williams, 1987). Consistent with this observation, research during the past several decades has examined the ways that older adults cope with stressors and has noted differences in both the process and the content of coping as compared to younger adults. In general, these differences have favored older adults, suggesting more effective coping in later life. For example, from the psychodynamic or developmental perspective, Vaillant (1977) reported that middle-aged men used fewer neurotic and immature defense mechanisms as compared to their younger selves. More recently, Diehl, Coyle, and Labouvie-Vief (1996) reported that a group of older adults reported a combination of coping strategies indicative of "greater impulse control" and positive appraisal of conflict situations as compared to younger adults and adolescents. Studies of standardized measures of coping have also supported these findings, suggesting that older adults generally use less escapism and avoidant coping (Aldwin & Revenson, 1985, cited in Aldwin, 1991 Irion & BlanchardFields, 1987). However, findings of more effective or positive coping in older adults have not been consistent across stressors or populations. Folkman, Lazarus, Pimley, and Novacek (1987) found that older people used relatively more escape avoidance, although this effect could not be replicated by Aldwin (1991). Furthermore, very small (Aldwin, Sutton, Chiara, & Spiro, 1996) or n...

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Assessment of pain and health-related quality of life in slowly progressive neuromuscular disease

Cited by 136 publications

References 36 publications

A systematic review of quality of life in adults with muscle disease

A systematic review of quality of life in adults with muscle disease

Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy

Coping With Chronic Pain Among Younger, Middle-Aged, and Older Adults Living With Neurological Injury and Disease

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