Measuring the Patient Reported Outcome of Work Function in People with Prodromal Huntington Disease

2.50
Hdl Handle:
http://hdl.handle.net/10755/160756
Type:
Presentation
Title:
Measuring the Patient Reported Outcome of Work Function in People with Prodromal Huntington Disease
Abstract:
Measuring the Patient Reported Outcome of Work Function in People with Prodromal Huntington Disease
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2010
Author:Williams, Janet, PhD
P.I. Institution Name:The Universityof Iowa
Contact Address:50 Newton Road, Iowa City, IA, 52242, USA
Contact Telephone:319-335-7046
Co-Authors:J.K. Williams, B. Brossman, N. Downing, J.S. Paulsen, , The University of Iowa, Iowa City, IA;
Problem: Quality of life measures for people with Huntington Disease (HD) have a limited functional perspective. People with neurodegenerative conditions, such as Huntington disease (HD) gradually lose abilities to sustain their usual performance at work. However, the influence of early symptoms on components of day to day work function is unknown. Upcoming clinical trials are focused on interventions to preserve cognitive, motor, and behavioral function in earliest stages of HD. Current measures of work function lack sufficient sensitivity for this population. Patient reported outcome measures are needed to document day to day work function in people with prodromal HD and to monitor outcomes of drug trials to modify disease onset. Method: A new Work Function instrument was developed through literature review, interviews and focus groups with 19 people in the prodromal stage of HD and their companions, and validated with 6 experts. Cognitive interviews were conducted with 7 people who had, and 2 people who had not participated in the original data collection. Results: A 20 item Work Function survey was developed with items designed to reflect domains of cognition, behavior, motor, and compensatory strategies. Expert validation yielded favorable results. On a 5-point Likert scale, all items received median scores of 4 or higher; 12 items received a median score of 5. Conclusions: A new work function measure is developed to document work function during the prodrome of HD. The measure may be adapted and have utility for the assessment of patient reported outcomes of work function in other populations in which cognitive, behavioral and/or motor function loss is a component of the disorder. Assessment of patient reported work function will provide a more complete understanding of the effectiveness of interventions designed to preserve ability to work, as an aspect of overall quality of life in people with prodromal HD.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Midwest Nursing Research Society

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleMeasuring the Patient Reported Outcome of Work Function in People with Prodromal Huntington Diseaseen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160756-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Measuring the Patient Reported Outcome of Work Function in People with Prodromal Huntington Disease</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Midwest Nursing Research Society</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2010</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Williams, Janet, PhD</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">The Universityof Iowa</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">50 Newton Road, Iowa City, IA, 52242, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">319-335-7046</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">janet-williams@uiowa.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">J.K. Williams, B. Brossman, N. Downing, J.S. Paulsen, , The University of Iowa, Iowa City, IA;</td></tr><tr><td colspan="2" class="item-abstract">Problem: Quality of life measures for people with Huntington Disease (HD) have a limited functional perspective. People with neurodegenerative conditions, such as Huntington disease (HD) gradually lose abilities to sustain their usual performance at work. However, the influence of early symptoms on components of day to day work function is unknown. Upcoming clinical trials are focused on interventions to preserve cognitive, motor, and behavioral function in earliest stages of HD. Current measures of work function lack sufficient sensitivity for this population. Patient reported outcome measures are needed to document day to day work function in people with prodromal HD and to monitor outcomes of drug trials to modify disease onset. Method: A new Work Function instrument was developed through literature review, interviews and focus groups with 19 people in the prodromal stage of HD and their companions, and validated with 6 experts. Cognitive interviews were conducted with 7 people who had, and 2 people who had not participated in the original data collection. Results: A 20 item Work Function survey was developed with items designed to reflect domains of cognition, behavior, motor, and compensatory strategies. Expert validation yielded favorable results. On a 5-point Likert scale, all items received median scores of 4 or higher; 12 items received a median score of 5. Conclusions: A new work function measure is developed to document work function during the prodrome of HD. The measure may be adapted and have utility for the assessment of patient reported outcomes of work function in other populations in which cognitive, behavioral and/or motor function loss is a component of the disorder. Assessment of patient reported work function will provide a more complete understanding of the effectiveness of interventions designed to preserve ability to work, as an aspect of overall quality of life in people with prodromal HD.</td></tr></table>en_GB
dc.date.available2011-10-26T23:10:09Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T23:10:09Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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