Abstract
The impact of neuromuscular disorders on functioning and quality of life
The group of neuromuscular disorders comprises many progressive conditions causing muscle weakness or spasticity. Questionnaires may be useful to understand the state of health of patients suffering from these conditions but as yet there are none specifically for neuromuscular disorders. This PhD research generated three valid and reliable questionnaires. The first, the Neuromuscular Disease Impact Profile (NMDIP), was primarily developed to organize individual patient care and support. The second, the Extremity Function Index (EFI), was primarily developed to measure the severity of patients’ functional impairments. Finally, we translated an existing questionnaire – the Stigma Scale for Chronic Illness – to measure stigmatization.
Together, these instruments offer a broad and unique understanding of the impact of neuromuscular disorders on patients’ functioning and quality of life. We did not find any differences in quality of life between subgroups with similar neuromuscular disorders. In addition, we found that muscle function impairments form the most common problem (which was also perceived as the most serious), while mental function impairment and pain appeared to be the main predictor of perceived quality of life. Most people with a neuromuscular disorder also experience stigmatization. Particularly self-stigma – the fear of stigmatization – proved a strong predictor of perceived quality of life.
These insights may have important consequences for the care and support of patients with neuromuscular disorders. The questionnaires can help these patients to exert influence on decision-making about their health.
The group of neuromuscular disorders comprises many progressive conditions causing muscle weakness or spasticity. Questionnaires may be useful to understand the state of health of patients suffering from these conditions but as yet there are none specifically for neuromuscular disorders. This PhD research generated three valid and reliable questionnaires. The first, the Neuromuscular Disease Impact Profile (NMDIP), was primarily developed to organize individual patient care and support. The second, the Extremity Function Index (EFI), was primarily developed to measure the severity of patients’ functional impairments. Finally, we translated an existing questionnaire – the Stigma Scale for Chronic Illness – to measure stigmatization.
Together, these instruments offer a broad and unique understanding of the impact of neuromuscular disorders on patients’ functioning and quality of life. We did not find any differences in quality of life between subgroups with similar neuromuscular disorders. In addition, we found that muscle function impairments form the most common problem (which was also perceived as the most serious), while mental function impairment and pain appeared to be the main predictor of perceived quality of life. Most people with a neuromuscular disorder also experience stigmatization. Particularly self-stigma – the fear of stigmatization – proved a strong predictor of perceived quality of life.
These insights may have important consequences for the care and support of patients with neuromuscular disorders. The questionnaires can help these patients to exert influence on decision-making about their health.
| Original language | English |
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| Qualification | Doctor of Philosophy |
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| Award date | 11-Apr-2018 |
| Place of Publication | [Groningen] |
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| Print ISBNs | 978-94-034-0432-5 |
| Electronic ISBNs | 978-94-034-0431-8 |
| Publication status | Published - 2018 |