Pain location and intensity impacts function in persons with myotonic dystrophy type 1 and facioscapulohumeral dystrophy with chronic pain

Miró, Jordi; Gertz, Kevin J.; Carter, Gregory T.; Jensen, Mark P.

doi:10.1002/mus.24079

Cited by 32 publications

(45 citation statements)

References 39 publications

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“…Lower scores on this scale indicate higher levels of pain and/or greater impact of pain on normal activities. A case of exercise‐induced proximal muscle pain has been reported in OPMD, and pain is a known feature of other muscular dystrophies . Further studies of pain prevalence, location, and severity in OPMD should be considered, as they may lead to interventions that improve HRQoL.…”

Section: Discussionmentioning

confidence: 99%

The relationship between physical symptoms and health‐related quality of life in oculopharyngeal muscular dystrophy

Youssof

2016

Muscle and Nerve

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Introduction Oculopharyngeal muscular dystrophy (OPMD) causes ptosis, dysphagia, and limb weakness. Health-related quality of life (HRQoL) and its relationship to physical symptoms was investigated Methods The Short Form-36 (SF-36) was completed by 89 participants in the US OPMD Registry. Multiple hierarchical regression was used to determine the relative contributions of dysphagia severity and lower extremity functional impairment to the physical (PCS) and mental (MCS) components of the SF-36. Results HRQoL was reduced in OPMD compared with population norms. Lower extremity functional impairment explained a significant proportion of variance in PCS and MCS. Dysphagia symptom severity explained a moderate amount of variance only in MCS. Dysphagia symptom severity had the strongest associations with general health perception and social functioning domains. Discussion Lower extremity functional impairment in OPMD deserves attention due to its large influence on HRQoL. Both generic and dysphagia-specific measures are necessary to assess HRQoL in OPMD.

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Section: Discussionmentioning

confidence: 99%

The relationship between physical symptoms and health‐related quality of life in oculopharyngeal muscular dystrophy

Youssof

2016

Muscle and Nerve

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“…Recent studies have suggested that pain may be present in the majority of FSHD patients, ranging from 76% to more than 80% of the FSHD population, with 19% reporting severe pain. 5,[10][11][12][13][14][15][16] In some cases, FSHD patients reported severe, difficult to control, multifocal muscle pain as the most disabling aspect of their condition. 9 Even so, pain is often undertreated.…”

Section: Accepted 14 October 2017mentioning

confidence: 99%

“…Even so, pain is often undertreated. Some studies have shown that pain in FSHD negatively impacts quality of life (QoL) and increases disease burden . However, the data available is scarce, often not FSHD‐specific and usually clinician‐reported.…”

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confidence: 99%

Chronic pain has a strong impact on quality of life in facioscapulohumeral muscular dystrophy

et al. 2017

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IntroductionEarlier small case series and clinical observations reported on chronic pain playing an important role in facioscapulohumeral dystrophy (FSHD). The aim of this study was to determine the characteristics and impact of pain on quality of life (QoL) in patients with FSHD.MethodsWe analyzed patient reported outcome measures collected through the U.K. FSHD Patient Registry.ResultsOf 398 patients, 88.6% reported pain at the time of study. The most frequent locations were shoulders and lower back. A total of 203 participants reported chronic pain, 30.4% of them as severe. The overall disease impact on QoL was significantly higher in patients with early onset and long disease duration. Chronic pain had a negative impact on all Individualised Neuromuscular Quality of Life Questionnaire domains and overall disease score.DiscussionOur study shows that pain in FSHD type 1 (FSHD1) is frequent and strongly impacts on QoL, similar to other chronic, painful disorders. Management of pain should be considered when treating FSHD1 patients. Muscle Nerve 57: 380–387, 2018

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“…Research has shown that function, at least in adults with physical disabilities, is influenced by some of these other pain characteristics over and above the effects of pain intensity. For example, pain at certain locations, such as the head in adults with myotonic and facioscapulohumeral dystrophy10 or in the low back and legs in adults with spinal cord injury,11 has been demonstrated to be of greater importance than pain in other body locations in the function of these individuals. Similarly, pain extent – the total number of body areas where pain is experienced – has been found to be associated with function over and above the effects of global pain intensity in adult populations with physical disabilities and chronic pain 4.…”

Section: Introductionmentioning

confidence: 99%

Pain extent and function in youth with physical disabilities

Miró¹,

Vega²,

Tomé‐Pires³

et al. 2017

JPR

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BackgroundThe aim of this study was to increase our understanding of the role that spatial qualities of pain (location and extent) play in functioning, among youths with disabilities and chronic pain.MethodsOne-hundred and fifteen youths (mean age 14.4 years; SD ±3.3 years) with physical disabilities and chronic pain were interviewed and were asked to provide information about pain locations and their average pain intensity in the past week, and to complete measures of pain interference, psychological function and disability. Most of the participants in this sample were males (56%), Caucasian (68%), and had a cerebral palsy (34%) or muscular dystrophy (25%) problem. Most participants did not report high levels of disability ( X¯=12.7, SD ±9.5, range 0–60) or global pain intensity ( X¯=3.2, SD ±2.4, range 0–10).ResultsPain at more than one body site was experienced by 91% of participants. There were positive associations between pain extent with pain interference (r = 0.30) and disability (r = 0.30), and a negative association with psychological function (r = –0.38), over and above average pain intensity. Additionally, pain intensity in the back (as opposed to other locations) was associated with more pain interference (r = 0.29), whereas pain intensity in the shoulders was associated with less psychological function (r = –0.18), and pain intensity in the bottom or hips was associated with more disability (r = 0.29).ConclusionThe findings support the need to take into account pain extent in the assessment and treatment of youths with physical disabilities and chronic pain, call our attention about the need to identify potential risk factors of pain extent, and develop and evaluate the benefits of treatments that could reduce pain extent and target pain at specific sites.

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Pain location and intensity impacts function in persons with myotonic dystrophy type 1 and facioscapulohumeral dystrophy with chronic pain

Cited by 32 publications

References 39 publications

The relationship between physical symptoms and health‐related quality of life in oculopharyngeal muscular dystrophy

The relationship between physical symptoms and health‐related quality of life in oculopharyngeal muscular dystrophy

Chronic pain has a strong impact on quality of life in facioscapulohumeral muscular dystrophy

Pain extent and function in youth with physical disabilities

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