Clinical neuropsychology in the management of myotonic dystrophy

Graham, Christopher D.; Kemp, Steven; Radaković, Ratko; Kapur, Narinder

doi:10.1002/mus.26085

Cited by 4 publications

(2 citation statements)

References 22 publications

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“…In fact, disease perception is one of the determinants of coping and/or psychological distress [7,26]. Therefore, although definitive evidence of the effectiveness of psychosocial interventions for patients with muscular diseases is unavailable [27], it is plausible to consider that psychosocial interventions, such as cognitive behavior therapy or neuropsychological interventions, could optimize QoL in these patients [28][29][30]. A recent randomized controlled trial for fatigued patients with DM1 showed cognitive behavioral therapy could increase patient's perceived capacity for activity and social participation, whereas there were no significant differences in disease burden and QoL between intervention and standard care group [31].…”

Section: Discussionmentioning

confidence: 99%

Subjective symptom impact on quality of life in patients with myotonic dystrophy

Fujino¹,

Saitô²,

Takahashi³

et al. 2018

Preprint

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Background: Although functional impairment in patients with myotonic dystrophy is an important determinant of quality of life (QoL), it is possible that QoL could further be influenced by the subjective evaluation of symptoms. The aim of this study was to investigate the subjective symptom impact on the QoL, after controlling for functional impairment. Methods: Eligible patients with myotonic dystrophy type 1 (DM1) were recruited from four hospitals in Japan. Subjective symptom impact across four domains (muscle weakness, fatigue, pain, and myotonia) and overall QoL were evaluated using the Individualized Neuromuscular Quality of Life (INQoL) questionnaire. Functional impairment was assessed using the modified Rankin scale. Results: Eighty-six patients with DM1 were included in this study. On multiple regression analysis, a portion of the variance in the overall QoL was significantly accounted for by demographic variables and functional impairment (adjusted R2 = 0.32). In addition to these variables, subjective symptom impact (muscular weakness, fatigue, and myotonia) explained additional variance in the overall QoL (adjusted R2 = 0.80). Difficulties in activities of daily living and participation caused by each symptom consistently predicted overall QoL across three symptom domains (muscular weakness, fatigue, and myotonia). Conclusions: Subjective symptom impact needs to be considered, in addition to functional impairment, when evaluating the QoL of patients with DM1.

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Section: Discussionmentioning

confidence: 99%

Subjective symptom impact on quality of life in patients with myotonic dystrophy

Fujino¹,

Saitô²,

Takahashi³

et al. 2018

Preprint

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“…In Europe, a study on the efficiency of traditional CBT for managing DM1-related symptoms (such as fatigue and reduced activity) is currently being conducted [ 76 ]. In a more recent paper, Grahams et al [ 77 ] discuss the results of Fujino et al [ 78 ] and point out the potential therapeutic benefits of cognitive rehabilitation for myotonic dystrophy patients. Authors stressed that even the evaluation itself (prior to cognitive rehabilitation interventions) could be beneficial for the patients’ and their relatives and clinicians’ perception of the patients’ difficulties.…”

Section: How Can We Conceptualize Social Difficulties In Dm1?mentioning

confidence: 99%

A Review of Psychopathology Features, Personality, and Coping in Myotonic Dystrophy Type 1

Minier

Lignier

Bouvet

et al. 2018

Journal of Neuromuscular Diseases

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Background:The last literature review on psychopathological features in Myotonic Dystrophy type 1 had been conducted by Ambrosini and Nurnberg in 1979. Since that date, many researches had been carried out.Objective:The aim of this study is (i) to systematically obtain and evaluate the relevant literature on psychopathological features, personality, and coping in individuals with adult phenotypes of Myotonic Dystrophy type 1. (ii) To summarize current research findings and draw conclusions for future research.Methods:A systematic search was conducted on Pubmed, PubPsych, PsycInfo, Science Direct, and Scopus covering the period of January 1979 to July 2017.Results:In view of our literature review, patients show mild psychopathological problems, such as interpersonal difficulties, lack of interest, dysphoria, concern about bodily functioning, and hypersensibility. However, they do not experience more psychiatric disorder in comparison to the general population, except for personality disorders and depression. We discussed problems concerning depression’s assessment tool. Patients also present symptoms of several personality disorders: avoidant personality disorder was the most common. Finally, coping strategies relative to limitations resulting from their disease have a negative impact on their quality of life.Conclusions:In conclusion, Myotonic Dystrophy type 1 patients did not present homogeneous psychopathological and psychological features. However, based on tendencies observed among Myotonic Dystrophy type 1 patients, elements to conceptualize their social difficulties are provided.

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