Health-related quality of life and unmet healthcare needs in Huntington’s disease

Walsem, Marleen R. van; Howe, Emilie Isager; Ruud, Gunvor A.; Frich, Jan C.; Anđelić, Nada

doi:10.1186/s12955-016-0575-7

Cited by 32 publications

(64 citation statements)

References 45 publications

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“…In our sample, the levels of HRQoL were lower than in the norm population, which agrees with earlier findings. 16,18 However, contrary to findings in other patient groups, 35 having unmet needs did…”

Section: The Use Of Npcs Reveals Unmet Needs In Dm1 Patientscontrasting

confidence: 77%

“…16,18 However, contrary to findings in other patient groups, 35 having unmet needs did TA B L E 3 Item analysis, Needs and Provisions Complexity Scale 16,18 However, contrary to findings in other patient groups, 35 having unmet needs did TA B L E 3 Item analysis, Needs and Provisions Complexity Scale …”

Section: The Use Of Npcs Reveals Unmet Needs In Dm1 Patientsmentioning

confidence: 75%

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Uncovering health and social care needs among myotonic dystrophy patients

et al. 2019

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Objectives: Myotonic dystrophy type 1 (DM1) is a slowly progressive multisystem disorder. Guidelines recommend multidisciplinary follow-up. We aimed to investigate the presence of unmet health and social care needs among patients with DM1 and whether unmet needs correlated with motor function, cognitive impairments, or quality of life. Material and Methods: Patients were 22 adults with DM1. "Needs and ProvisionsComplexity Scale" (NPCS) was applied to evaluate the individual's needs and provision of health and social services. The Muscular Impairment Rating Scale (MIRS) was used to measure motor function and disease stage. All patients underwent neuropsychological testing. The EQ-5D-3L questionnaire was used to evaluate the patients'health-related quality of life (HRQoL). Results:Median time from diagnosis was 11 years (range: 1-40). Twenty patients had developed needs related to social care, personal care, and rehabilitation that had not been met, whereas need for medical follow-up was largely met. The more pronounced the muscular impairment, the more unmet needs were experienced by DM1 patients (r = 0.50, P = 0.019). Degree of unmet needs did not correlate with full-scale IQ (r = −0.27, P = 0.23) or HRQoL (r = −0.14, P = 0.55). Conclusion:Using NPCS, we discovered that patients with DM1 had unmet needs with respect to social care, personal care, and rehabilitation although their need for medical follow-up was met. Thus, the use of NPCS helped bring our practice in better accordance with guidelines. A higher MIRS grade should alert the clinician to the likelihood of unmet needs. K E Y W O R D Scognitive function, healthcare delivery, myotonic dystrophy type 1, quality of life, social support

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Section: The Use Of Npcs Reveals Unmet Needs In Dm1 Patientscontrasting

confidence: 77%

Section: The Use Of Npcs Reveals Unmet Needs In Dm1 Patientsmentioning

confidence: 75%

Uncovering health and social care needs among myotonic dystrophy patients

et al. 2019

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“…However, the results might be explained by the low sensitivity of the questionnaires. While it is well known that quality of life is inversely associated with increasing stages of the disease55–58 and increased symptoms are associated with lower quality of life,59,60 less is known about the magnitude of longitudinal changes in quality of life 61. Indeed, there is currently no health-related quality of live measure recommended to measure change of severity over time 62…”

Section: Discussionmentioning

confidence: 99%

Exercise in Huntington’s Disease: Current State and Clinical Significance

Mueller

Petersen

Jung

2019

Tremor and Other Hyperkinetic Movements

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BackgroundHuntington’s disease (HD) is a rare, progressive neurodegenerative disease. Currently, there is no cure for the disease, but treatment may alleviate HD symptoms. In recent years, several exercise training interventions have been conducted in HD patients. In the current article, we review previous studies investigating targeted exercise training interventions in HD patients.MethodsWe performed a literature search using the PubMed, Scopus, Web of Science, and Google Scholar databases on exercise training interventions in HD patients. Six publications fulfilled the criteria and were included in the review.ResultsExercise training resulted in beneficial effects on cardiovascular and mitochondrial function. Training effects on cognition, motor function, and body composition were less congruent, but a positive effect seems likely. Health-related quality of life during the training interventions was stable. Most studies reported no related adverse events in response to training.DiscussionExercise training seems to be safe and feasible in HD patients. However, current knowledge is mainly based on short, small-scale studies and it cannot be transferred to all HD patients. Therefore, longer-term interventions with larger HD patient cohorts are necessary to draw firm conclusions about the potentially positive effects of exercise training in HD patients.

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“…However, the results might be explained by the low sensitivity of the questionnaires. While it is well known that quality of life is inversely associated with increasing stages of the disease 55 – 58 and increased symptoms are associated with lower quality of life, 59 , 60 less is known about the magnitude of longitudinal changes in quality of life. 61 Indeed, there is currently no health-related quality of live measure recommended to measure change of severity over time.…”

Section: Discussionmentioning

confidence: 99%