Traducción y validación de la escala <i>Individualized Neuromuscular Quality of Life</i> para la población española: evaluación de la calidad de vida para personas afectas de enfermedades neuromusculares

Fagoaga, J; Girabent-Farrés, Montserrat; Bagur-Calafat, Caritat

doi:10.33588/rn.6405.2016395

Cited by 4 publications

(3 citation statements)

References 8 publications

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“…When comparing these results with those of one study that was conducted with NMD and assessed with INQoL, the patients with LGMD-D2 are found to have higher scores on the impact of muscle pain and fatigue [33]. In another study in which patients with NMD were assessed using INQoL, it was observed that in the present sample, they had higher fatigue impact scores [34].…”

Section: Discussionsupporting

confidence: 54%

“…Another important aspect recognized in the present study is that age seems to correlate with a greater involvement of the disease in activities of daily living and emotional management. Age as an influential variable in the worsening of disease symptoms is seen in other chronic pathologies [33]. The underlying explanation for this relationship seems to be that the specific pathophysiological mechanisms that cause clinical disorders are modified by an aging process [34].…”

Section: Discussionmentioning

confidence: 99%

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Limb–Girdle Muscular Dystrophy D2 TNPO3-Related: A Quality of Life Study

Rodríguez

Amayra

García

et al. 2023

Muscles

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The present study is the first research that analyzes the quality of life (QoL) of people affected by a dominant form of limb–girdle muscular dystrophy, specifically limb–girdle muscular dystrophy D2 (LGMD-D2). Additionally, clinical forms of the individual cases of the six affected patients are presented. This study also aims to explore the differences between patients’ reports and caregivers’ reports, and between LGMD-D2 and recessive forms of LGMD. The instruments used were as follows: sociodemographic data, GSGC, and INQoL instrument. The sample consisted of six people affected by LGMD-D2: three caregivers of three affected people, and three patients with recessive LGMD. They came from associations of affected people and a hospital in Padua. Those affected have multiple symptoms that lead to disability, which ultimately leads to dependence on the assistance. The present study shows that LGMD-D2 has a greater impact on activities of daily living, fatigue, muscle pain, and independence than other LGMD pathologies or other neuromuscular diseases. It also appears that age could influence QoL, and that muscle weakness is a very disabling symptom in this variant. In the current context of constantly developing research for new treatments, it is essential to analyze which aspects are most affected. Finally, caregivers can play an essential role in symptom reporting, as certain psychological adjustment mechanisms in the patient may be interfering with the objectivity of the report.

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Section: Discussionsupporting

confidence: 54%

Section: Discussionmentioning

confidence: 99%

Limb–Girdle Muscular Dystrophy D2 TNPO3-Related: A Quality of Life Study

Rodríguez

Amayra

García

et al. 2023

Muscles

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“…This resulted in 17 generic and 14 diseasespecific PROMs out of 190, which we have further described in Table 2. Only ten PROMs, the Activity Limitations Measure (ACTIVLIM) (in different types of NMD) [21][22][23][24][25], Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) (in ALS) [26][27][28][29][30][31][32][33][34][35], ALSAQ-5 (in ALS) [28,29,33,36], Childhood Health Assessment Questionnaire (CHAQ) (in jDM and jIIM) [37][38][39][40][41], Child Health Questionnaire psychosocial summary score (CHQ-ps) (in juvenile dermatomyositis) [38], Dyspnea-ALS-Scale (DALS-15) (in ALS) [42,43], Health Assessment Questionnaire-Disability Index (HAQ-DI) (in myositis) [44], Individualized Neuromuscular Quality of Life Questionnaire (INQoL) (in different types of NMD) [45][46][47][48][49], Inflammatory Rasch-built Overall Disability Scale ((I-RODS) (in Chronic Inflammatory Demyelinating Polyneuropathy, Guillain Barre Syndrome, Monoclonal gammopathy of undetermined significance) [50][51][52][53], and Patient-Reported Outcomes Measurement Information System Physical Function (PROMIS PF20) (in myositis) [44], were sufficiently evaluated for all psychometric characteristics (when statistical psychometric indexes met COSMIN's quality criteria). Table…”

Section: Resultsmentioning

confidence: 99%

Patient-Reported Outcome Measures in Neuromuscular Diseases: A Scoping Review

Voet,

Pater,

Garmendia

et al. 2024

Journal of Neuromuscular Diseases

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Patient-reported outcome measures (PROMs) are valuable in comprehensively understanding patients’ health experiences and informing healthcare decisions in research and clinical care without clinicians’ input. Until now, no central resource containing information on all PROMS in neuromuscular diseases (NMD) is available, hindering the comparison and choice of PROMs used to monitor NMDs and appropriately reflect the patient’s voice. This scoping review aimed to present a comprehensive assessment of the existing literature on using PROMs in children and adults with NMD. A scoping methodology was followed using Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) and COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines to assess the literature on PROMs in NMDs. Eligibility criteria encompassed articles describing psychometric development or evaluation of generic or disease-specific PROM-based instruments for adults and children with specific NMDs. The data charting process involved extracting measurement properties of included PROMs, comprising validity, reliability, responsiveness, and interpretability information. The review identified 190 PROMs evaluated across 247 studies in individuals with NMDs. The majority of PROMs were disease specific. The physical functioning domain was most assessed. Validity was the most frequently investigated measurement property, with a limited number of PROMs sufficiently evaluated for a range of psychometric characteristics. There is a strong need for further research on the responsiveness and interpretability of PROMs and the development of PROMs on social functioning in NMD.

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Validation of Persian Individualized Neuromuscular Quality of Life in patients with muscular dystrophies

Moradi¹,

Jamal-Omidi²,

Masoudi³

et al. 2020

CJN

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Background: Neuromuscular disorders affect physical and mental aspects of a patient and in other words alter the patients’ quality of life (QOL). In the present study, we investigated the validity and reliability of the Persian version of Individualized Neuromuscular QOL (INQOL) to provide a better insight into patients’ QOL. Methods: Original version of the INQOL was translated backward and then forward. The resultant Persian version and a standard questionnaire, 36-Item Short Form Health Survey (SF-36), were then given to 83 participants with neuromuscular disorders. Internal consistency, known-group validity, concurrent validity, and test-retest reliability were assessed. Results: The scores of matched sections for QOL in the two questionnaires were favorably correlated (P < 0.05). Correlation between test and retest scores was also significant (P < 0.05). Moreover, the Cronbach’s alpha of 0.82 was representative of robust internal consistency between INQOL covering sections. Conclusion: The Persian version of the INQOL can be used in clinical and research practice to detect changes in QOL which are related to neuromuscular disorders, due to its favorably reliable and valid characteristics.

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Traducción y validación de la escala Individualized Neuromuscular Quality of Life para la población española: evaluación de la calidad de vida para personas afectas de enfermedades neuromusculares

Cited by 4 publications

References 8 publications

Limb–Girdle Muscular Dystrophy D2 TNPO3-Related: A Quality of Life Study

Limb–Girdle Muscular Dystrophy D2 TNPO3-Related: A Quality of Life Study

Patient-Reported Outcome Measures in Neuromuscular Diseases: A Scoping Review

Validation of Persian Individualized Neuromuscular Quality of Life in patients with muscular dystrophies

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