scholarly journals Stability and relative validity of the Neuromuscular Disease Impact Profile (NMDIP)

BMC Neurology ◽  
2017 ◽  
Vol 17 (1) ◽  
Author(s):  
Isaäc Bos ◽  
Jan B.M. Kuks ◽  
Josué Almansa ◽  
Hubertus P.H. Kremer ◽  
Klaske Wynia
Keyword(s):  
Neuromuscular Disease ◽  
Relative Validity ◽  
Disease Impact

The ambiguity of the concept of participation in measurement instruments: operationalization of participation influences research outcomes

2014 ◽  
Vol 28 (12) ◽  
pp. 1225-1236 ◽  
Author(s):  
Hillegonda A Stallinga ◽  
Pieter U Dijkstra ◽  
Isaac Bos ◽  
Yvonne F Heerkens ◽  
Petrie F Roodbol
Keyword(s):  
Social Relations ◽  
Sense Of Coherence ◽  
Neuromuscular Disease ◽  
Prediction Models ◽  
University Hospital ◽  
International Classification Of Functioning ◽  
Personal Factors ◽  
Measurement Instruments ◽  
Disease Impact ◽  
The Impact

Objective: This study explores, based on the International Classification of Functioning, Disability and Health, the consequences of different operationalizations of participation in regression models predicting participation in one sample of patients. Design: Cross-sectional, comparative study. Setting: Department of Neurology of a University Hospital. Subjects: A total of 677 patients with a Neuromuscular Disease. Measures: Participation was measured using the Neuromuscular Disease Impact Profile questionnaire, the RAND-36 Item Health Survey (social functioning, role limitations—physical, role limitations—emotional) and the Impact on Participation and Autonomy questionnaire (autonomy outdoors, social relations). Potential predictors of participation included type of neuromuscular disease, body functions (measured with Neuromuscular Disease Impact Profile), activities (measured with Neuromuscular Disease Impact Profile), environmental factors (measured with Neuromuscular Disease Impact Profile), and personal factors (measured with the 13-item Sense of Coherence questionnaire). The results were controlled for patient characteristics. Results: Participation was statistically predicted by different determinants depending on the operationalization used for participation. Additionally, the regression coefficients differed significantly. Body functions and activities were predictors in five out of six operationalizations of participation. Sense of coherence predicted participation in all of the operationalizations. The explained variance of the different models ranged from 25% (RAND-36 role limitations—emotional) to 65% (Neuromuscular Disease Impact Profile). Conclusions: Different operationalizations of participation result in different prediction models. Lack of conceptual consensus makes participation an ambiguous concept in research, and this ambiguity makes evidence-based decisions directed at enhancing participation difficult. Participation needs to be operationalized in an unambiguous and standard way in order to improve the comparability of outcomes.

VENTILATOR USE IN PROGRESSIVE NEUROMUSCULAR DISEASE: IMPACT ON PATIENTS AND THEIR FAMILIES

2008 ◽  
Vol 30 (2) ◽  
pp. 200-207 ◽  
Author(s):  
Jessica Robins Miller ◽  
Agatha P. Colbert ◽  
Nancy C. Schock
Keyword(s):  
Neuromuscular Disease ◽  
Disease Impact

Neuromuscular Disease: A Case-Based Approach

2013 ◽  
Author(s):  
John H. J. Wokke ◽  
Pieter A. van Doorn ◽  
Jessica E. Hoogendijk ◽  
Marianne de Visser
Keyword(s):  
Neuromuscular Disease ◽  
Case Based

“Does use of the cough assist machine reduce hospitalisation time for children with neuromuscular disease?”

2014 ◽  
Vol 42 (3) ◽  
Author(s):  
Rachel Phillips ◽  
◽  
Elizabeth Edwards ◽  
David McNamara ◽  
Peter Reed ◽  
...  
Keyword(s):  
Neuromuscular Disease

Testes utilizados para avaliação respiratória nas doenças neuromusculares

1999 ◽  
Vol 15 (1) ◽  
pp. 61-70
Author(s):  
Natasha Nicholson de Santa Maria ◽  
Erica Marques Zanelli ◽  
Marina Brito Silva ◽  
Sabrina Kyoko de Paula Asa ◽  
Francis Meire Fávero ◽  
...  
Keyword(s):  
Reference Values ◽  
Neuromuscular Disease ◽  
Vital Capacity

O objetivo deste estudo consiste em identificar e caracterizar os principais testes utilizados na avaliação da função pulmonar de pacientes com doenças neuromusculares citados em artigos científicos publicados nos últimos 40 anos. Utilizou-se de revisão bibliográfica incluindo estudos publicados nos anos de 1965 a 2005 encontrados nas bases de dados MEDLINE, PUBMED, EMBASE, LILACS e SCIELO que utilizaram descritores na língua portuguesa (doenças neuromusculares, espirometria, capacidade vital, valores de referência) e na inglesa (neuromuscular disease, spirometry, vital capacity reference values). Foram encontrados 9 testes subdivididos em medidas, valores de referência e utilidade. Os testes citados foram: testes de função pulmonar que incluem medidas espirométricas, utilizados para avaliar volumes pulmonares, presença de obstrução de vias aéreas, sinais de fraqueza e fadiga dos músculos respiratórios; testes que avaliam a força dos músculos respiratórios, utilizados para avaliar a força dos músculos respiratórios e a atividade diafragmática isolada; teste que avalia a atividade elétrica de nervos, junção neuromuscular e músculos relacionados a respiração; testes que avaliam o limiar de fadiga dos músculos respiratórios; teste que avalia o grau de relaxamento dos músculos respiratórios, utilizado para analisar a recuperação muscular; testes que avaliam a eficácia da tosse; análise da concentração de gases arteriais, capnografia e oximetria de pulso, utilizadas para avaliar principalmente retenção de CO2 e presença de hipoxemia durante o sono, respectivamente.

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