46 research outputs found
Survey response burden in caregivers of civilians and service members/veterans with traumatic brain injury
Elizabeth A Hahn,1,2 Phillip A Ianni,3 Robin A Hanks,4 Jennifer A Miner,3 Jenna Freedman,3 Noelle E Carlozzi3 1Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; 2Center for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; 3Center for Clinical Outcomes Development and Application (CODA), Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA; 4Department of Physical Medicine and Rehabilitation, School of Medicine, Wayne State University, Detroit, MI, USA Purpose: Caregivers have expressed interest in survey research, yet there is limited information available about survey response burden, ie, the time, effort, and other demands needed to complete the survey. This may be particularly important for caregivers due to excessive time demands and/or stress associated with caregiving. Method: Survey response burden indicators were collected as part of a study to develop and validate a patient-reported outcome (PRO) measurement system for caregivers of civilians or service members/veterans (SMVs) with traumatic brain injury (TBI). Results: Compared to the group caring for civilians (n=335), the group caring for SMVs (n=123) was comprised of all women, was younger, had fewer racial/ethnic minorities, had more education, and nearly all were the spouse of a person with TBI. All PRO outcomes were poorer for the group caring for SMVs. Although the caregivers of SMVs had poorer PRO outcomes compared to caregivers of civilians, they were more likely to report that they would recommend the study to others. Caregivers with less education and those from racial/ethnic minority groups had more favorable ratings of their study participation experience, even though they needed more help using the computer or answering the questions. Conclusion: The results of this study provide useful information about the acceptability of computer-based survey administration for caregiver PROs. PROs are widely gathered in clinical and health services research and could be particularly useful in TBI care programs. More data are needed to determine the best assessment strategies for individuals with lower education who are likely to require some assistance completing PRO surveys. Studies evaluating PROs administered by multimedia platforms could help researchers and clinicians plan the best strategies for assessing health-related quality of life in TBI caregivers. Keywords: patient-reported outcomes, computer-based survey administration, study participation ratings, military personne
Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States
Understanding speech and swallowing difficulties in individuals with Huntington disease: Validation of the HDQLIFE Speech Difficulties and Swallowing Difficulties Item Banks
Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD)
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Quality of life in Huntington's disease: critique and recommendations for measures assessing patient health‐related quality of life and caregiver quality of life
The compromise of quality of life (QoL) in Huntington’s disease (HD) is a major issue, both
for individuals with the disease as well as for their caregivers. The International Parkinson
and Movement Disorder Society (MDS) commissioned a review of the use and clinimetric
validation status of measures used in HD to assess aspects related with QoL, and to make
recommendations on their use following standardized criteria. We included both patientcentered
measures (patient Health-related (HR) QoL measures) and caregiver-centered
measures (caregiver QoL measures). After conducting a systematic literature search, we
included 12 measures of patient HRQoL and 2 measures of caregiver QoL. Regarding patientcentered
measures, the Medical Outcomes Study 36-Item Short-Form Health Survey is
“recommended” as a generic assessment of HRQoL in patients with HD. The 12-Item Short
Form Health Survey, the Sickness Impact Profile, the 12-item World Health
Organization Disability Assessment Schedule, and the Huntington's Disease Health-Related
Quality of Life questionnaire are “suggested”. No caregiver-centered QoL measure obtained a
“recommended” status. The Alzheimer’s Carer’s Quality of Life Inventory and the
Huntington's Disease Quality of Life Battery for Carers are “suggested”. Recognizing that the
assessment of patient HRQoL can be challenging in HD, as patients may lack insight and
there is insufficient clinimetric testing of these scales, the committee concluded that further
validation of currently available HRQoL measures should be undertaken, namely, those HDspecific
HRQoL measures that have recently been reported and used