Validation of the individualised neuromuscular quality of life for the USA with comparison of the impact of muscle disease on those living in USA versus UK

Abstract

BackgroundThe Individualised Neuromuscular Quality of Life (INQoL) questionnaire is a published muscle disease specific measure of QoL that has been validated using both qualitative and quantitative methods in a United Kingdom population of adults with muscle disease. If INQoL is to be used in other countries it needs to be linguistically and culturally validated for those countries. It may be important to understand any cultural differences in how patients rate their QoL when applying QoL measures in multi-national clinical trials.MethodsWe conducted a postal survey of QoL issues in US adults with muscle disease using an agreed translation, from UK to US English, of the same questionnaire as was used in the original construction of INQoL. This questionnaire included an opportunity for free text comments on any aspects of QoL that might not have been covered by the questionnaire. We examined the responses using both quantitative and qualitative approaches. The frequency of the responses in US versus UK populations was compared using appropriate correlation tests and Rasch analysis. A phenomenological approach was used to guide the qualitative analysis and facilitate the exploration of patients' perceptions and experiences.ResultsThe US survey received 333 responses which were compared with 251 UK survey responses.We found that INQoL domains covered all the issues raised by US subjects with no additional domains required. The experiences of those with muscle disease were remarkably similar in the US and UK but there were differences related to the impact of muscle disease on relationships and on employment which was greater for those living in the United States. The greater impact on employment was associated with a higher importance rating given to employment in the US. This may reflect the lower level of financial support for those who are unemployed, and the loss of employment related health benefits.ConclusionsINQoL is appropriate for use in US population but there may be differences in the importance that US subject attach to certain aspects of QoL that could be the basis for further study.If these differences are confirmed then this may have implications for the interpretation of QoL outcomes in multi-national trials.

The use of an online support group for neuromuscular disorders: a thematic analysis of message postings

“…Members discussed problems in relation to recognition of their illness which resonates with previous reports of the difficulties people with NMD have in terms of dealing with public misconceptions of their symptoms [9,10]. Negative media and Government portrayals of disabled people were described as a source of stress.…”

“…(10) A positive outlook on one's symptoms was also evident in the frequent use of humour when describing specific issues. For example, the following member joked about the number of falls he had taken recently and the unfortunate circumstances in which they had occurred:…”

“…I have been involved in a lot of the politics of funding with my PCT 10 and their inability to listen and understand my condition has been astounding at times.…”

“…(29) I was slowly losing confidence and falling more, still can't bear to be seen with them [crutches] but that's life. (10) Although forum users often discussed negative aspects of their symptoms, they also expressed a desire to maintain a positive outlook on dealing with their condition. Some noted their deliberate attempts to remain positive about their condition in order to help themselves to cope better:…”

“…(10) Misconceptions by the general public were also discussed. Members reported situations where they felt excluded from certain conversations/activities, due to perceived differences between disabled people and able-bodied people:…”