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Quality of Life Assessments in Motor Neurone Disease Patients on Non-Invasive Ventilation Using Disease Specific, Treatment Specific and Generic Tools
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A1470 - Quality of Life Assessments in Motor Neurone Disease Patients on Non-Invasive Ventilation Using Disease Specific, Treatment Specific and Generic Tools
Author Block: N. Grivell1, V. Aiyappan2, P. Catcheside1, G. Keighley-James3, D. Schultz4, K. Glaetzer5, P. Allcroft5, N. A. Antic1, D. McEvoy1; 1Adelaide Institute for Sleep Health, Flinders University, Daw Park, Australia, 2Respiratory Medicine, Flinders Medical Centre, Adelaide, Australia, 3Sleep Health Service, Southern Adelaide Local Health Network, SA Health, Bedford Park, Australia, 4Neurology, Southern Adelaide Local Health Network, SA Health, Bedford Park, Australia, 5Southern Adelaide Palliative Services, Southern Adelaide Local Health Network, SA Health, Bedford Park, Australia.
Rationale: Non-invasive ventilation (NIV) treatment is considered the standard of care for patients with motor neurone disease (MND) who develop respiratory dysfunction. Previous studies have demonstrated improvement in quality of life (QoL) for patients who are initiated on NIV. However different tools have been used to assess QoL across studies and these have not assessed treatment specific QoL over time. The aims of this study are to: (1) assess QoL using disease specific, treatment specific and generic measurements in patients with MND on NIV; and (2) determine the most appropriate tool to assess the impact of NIV treatment on the QoL of people with MND.
Methods: Prospective observational analysis of data from BreatheMND-1 trial cohort, where QoL measurements (disease specific ALS Functional Rating Scale - Revised [ALSFRS-R], treatment specific Severe Respiratory Insufficiency Questionnaire [SRI] and generic Assessment of Quality of Life - Eight Dimensions [AQoL-8D]) are collected at baseline, commencement of NIV treatment and 2 monthly intervals for up to 12 months.
Results: To date, 8 patients have completed the first 2 month follow-up after commencing NIV (6 males; mean [range] at NIV commencement: age 63 [49-70] years, BMI 28.1 [24.3-34.6] kg/m2, FVC 65 [38-112] % predicted, time since diagnosis 8.3 [3-14] months; 5 bulbar onset). Preliminary QoL data shows a significant decline over time from NIV commencement to last available follow-up for ALSFRS-R assessment (median [IQR]) -3.3 [-5.4 to -2.0] % per month (p=0.026) and SRI-Summary Scale assessment (-1.7 [-3.3 to -1.0] % per month, p=0.045), but not AQoL-8D (-1.4 [-6.4 to -0.5] % per month, p=0.057).
Conclusion: For progressive degenerative diseases like MND, the studied QoL measurements might not reflect improvements in QoL with non-disease modifying supportive interventions (e.g. NIV for MND). Future research should be aimed at designing a new tool that can better assess the impact of NIV treatment on the QoL of people with MND.
Author Block: N. Grivell1, V. Aiyappan2, P. Catcheside1, G. Keighley-James3, D. Schultz4, K. Glaetzer5, P. Allcroft5, N. A. Antic1, D. McEvoy1; 1Adelaide Institute for Sleep Health, Flinders University, Daw Park, Australia, 2Respiratory Medicine, Flinders Medical Centre, Adelaide, Australia, 3Sleep Health Service, Southern Adelaide Local Health Network, SA Health, Bedford Park, Australia, 4Neurology, Southern Adelaide Local Health Network, SA Health, Bedford Park, Australia, 5Southern Adelaide Palliative Services, Southern Adelaide Local Health Network, SA Health, Bedford Park, Australia.
Rationale: Non-invasive ventilation (NIV) treatment is considered the standard of care for patients with motor neurone disease (MND) who develop respiratory dysfunction. Previous studies have demonstrated improvement in quality of life (QoL) for patients who are initiated on NIV. However different tools have been used to assess QoL across studies and these have not assessed treatment specific QoL over time. The aims of this study are to: (1) assess QoL using disease specific, treatment specific and generic measurements in patients with MND on NIV; and (2) determine the most appropriate tool to assess the impact of NIV treatment on the QoL of people with MND.
Methods: Prospective observational analysis of data from BreatheMND-1 trial cohort, where QoL measurements (disease specific ALS Functional Rating Scale - Revised [ALSFRS-R], treatment specific Severe Respiratory Insufficiency Questionnaire [SRI] and generic Assessment of Quality of Life - Eight Dimensions [AQoL-8D]) are collected at baseline, commencement of NIV treatment and 2 monthly intervals for up to 12 months.
Results: To date, 8 patients have completed the first 2 month follow-up after commencing NIV (6 males; mean [range] at NIV commencement: age 63 [49-70] years, BMI 28.1 [24.3-34.6] kg/m2, FVC 65 [38-112] % predicted, time since diagnosis 8.3 [3-14] months; 5 bulbar onset). Preliminary QoL data shows a significant decline over time from NIV commencement to last available follow-up for ALSFRS-R assessment (median [IQR]) -3.3 [-5.4 to -2.0] % per month (p=0.026) and SRI-Summary Scale assessment (-1.7 [-3.3 to -1.0] % per month, p=0.045), but not AQoL-8D (-1.4 [-6.4 to -0.5] % per month, p=0.057).
Conclusion: For progressive degenerative diseases like MND, the studied QoL measurements might not reflect improvements in QoL with non-disease modifying supportive interventions (e.g. NIV for MND). Future research should be aimed at designing a new tool that can better assess the impact of NIV treatment on the QoL of people with MND.
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