Suchergebnisse

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 personnel

Patient-reported outcomes (PROs) are measures of how patients feel or what they are able to do in the context of their health status; PROs are reports, usually on questionnaires, about a patient's health conditions, health behaviors, or experiences with health care that individuals report directly, without modification of responses by clinicians or others; thus, they directly reflect the voice of the patient. PROs cover domains such as physical health, mental and emotional health, functioning, symptoms and symptom burden, and health behaviors. They are relevant for many activities: helping patients and their clinicians make informed decisions about health care, monitoring the progress of care, setting policies for coverage and reimbursement of health services, improving the quality of health care services, and tracking or reporting on the performance of health care delivery organizations. We address the major methodological issues related to choosing, administering, and using PROs for these purposes, particularly in clinical practice settings. We include a framework for best practices in selecting PROs, focusing on choosing appropriate methods and modes for administering PRO measures to accommodate patients with diverse linguistic, cultural, educational, and functional skills, understanding measures developed through both classic and modern test theory, and addressing complex issues relating to scoring and analyzing PRO data.

OBJECTIVE: To develop a new measure of caregiver strain for use in caregivers of individuals with TBI, TBI-CareQOL Caregiver Strain. DESIGN: Qualitative data, literature reviews, and cross-sectional survey study. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Five-hundred-sixty caregivers of civilians (n=344) or service members/veterans (SMVs) with TBI (n=216). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: TBI-CareQOL Caregiver Strain Item Bank RESULTS: Exploratory and confirmatory factor analyses, a graded response model (GRM) and differential item functioning supported the retention of 33 items in the final measure. GRM calibration data was used to inform the selection of a 6-item static short form, and to program the TBI-CareQOL Caregiver Strain computer-adaptive test (CAT). CAT simulation analyses indicated a 0.97 correlation between the CAT scores and the full item-bank. Three-week test-retest reliability was strong (r = 0.83). CONCLUSIONS: The new TBI-CareQOL Caregiver Strain CAT and corresponding 6-item short form were developed using established rigorous measurement development standards; this is the first self-reported measure developed to evaluate caregiver strain in caregivers of individuals with TBI.

OBJECTIVE: To develop new patient-reported outcome (PRO) measures to better understand feelings of loss in caregivers of individuals with traumatic brain injury (TBI). DESIGN: Cross-sectional survey study. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Five-hundred-sixty caregivers of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: TBI-CareQOL Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with Traumatic Brain Injury Item banks RESULTS: While the initial exploratory and confirmatory factor analyses of the Feelings of Loss item pool (98 items) potentially supported a unidimensional set of items, further analysis indicated two different factors: Feelings of Loss-Self (43 items) and Feelings of Loss-Person with TBI (20 items). For Feelings of Loss-Self, an additional 13 items were deleted due to item-response theory based item misfit; the remaining 30 items had good overall model fit (Confirmatory Fit Index [CFI]=0.96, Tucker Lewis Index [TLI]=.96, Root Mean Squared Error [RMSEA]=.10). For Feelings of Loss-Other, 1 additional item was deleted due to an associated high correlated error modification index value; the final 19 items evidenced good overall model fit (CFI=0.97, TLI=.97, RMSEA=.095). The final item banks were developed to be administered as either a CAT or a short-form. Clinical experts approved the content of the 6-item short forms of the two measures (three-week test-retest was r=.87 for Feelings of Loss-self and r=.85 for Feelings of Loss-Person with TBI) CONCLUSIONS: The findings from this study resulted in the development of two new PROs to assess feelings of loss in caregivers of individuals with TBI; TBI-CareQOL Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with TBI. Good psychometric properties were established and a short-form was developed for ease of use in clinical situations. ...

OBJECTIVE: To examine the reliability and validity of the short form (SF) and computer adaptive test (CAT) versions of the Patient Reported Outcomes Measurement Information System (PROMIS) measures of social health of caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI). DESIGN: Self-report questionnaires administered through an on-line data collection platform. SETTING: Hospital and community-based outreach at three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility PARTICIPANTS: 560 (344 civilians and 216 military) caregivers of individuals with a documented TBI INTERVENTION: N/A MAIN OUTCOME MEASURES: 5 PROMIS Social Health Measures RESULTS: All five PROMIS social health measures exceeded the a priori criterion for internal consistency reliability (≥ 0.70); most PROMIS measures met the criterion for test-retest reliability (≥ 0.70) in the civilian sample; in the SMV sample, test-retest reliability was generally below this criterion, except for Social Isolation. For both samples, convergent validity was supported by moderate correlations between the 5 PROMIS social health measures and related measures, and discriminant validity was supported by low correlations between PROMIS social health measures and measures of dissimilar constructs. Most PROMIS scores indicated significantly worse social health in both samples of those caring for individuals who were low functioning. Finally, impairment rates in social health were elevated for those caring for low functioning individuals, especially in the SMV sample. CONCLUSIONS: The PROMIS computer adaptive test and short form social health measures have potential clinical utility for use in caregivers of civilians and SMVs with TBI.

OBJECTIVE: To develop a new patient-reported outcome measure that captures feelings of being trapped that are commonly experienced by caregivers of individuals with traumatic brain injury (TBI). DESIGN: Cross-sectional SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Caregivers of civilians with TBI (n=344) and caregivers of service members/veterans with TBI (n=216). INTERVENTIONS: Not applicable. OUTCOME MEASURES: TBI-CareQOL Feeling Trapped Item Bank RESULTS: From an initial item pool of 28 items, exploratory and confirmatory factor analyses supported the retention of 16 items. After graded response model (GRM) and differential item functioning (DIF) analyses were conducted, 15 items were retained in the final measure. GRM calibration data, along with clinical expert input, was used to choose a 6-item, static short form, and the calibration data was utilized for programming of the TBI-CareQOL Feeling Trapped computer adaptive test (CAT). CAT simulation analyses produced an r = 0.99 correlation between CAT scores and the full item-bank. Three-week short form test-retest reliability was very good (r = 0.84). CONCLUSIONS: The new TBI-CareQOL Feeling Trapped item bank was developed to provide a sensitive and efficient examination of the impact that feelings of being trapped, due to the caregiver role, have on health-related quality of life (HRQOL) for caregivers of individuals with TBI. Both the CAT and corresponding 6-item short form demonstrate excellent psychometric properties. Future work is needed to establish the responsiveness of this measure to clinical interventions for these caregivers.

PURPOSE: Caregivers of service members/veterans (SMVs) encounter a number of barriers when navigating the military health care system. The purpose of this study was to develop a new measure to assess potential caregiver frustration with the systems of care and benefits in the United States Departments of Defense and Veterans Affairs. METHOD: The TBI-CareQOL Military Health Care Frustration measure was developed using data from 317 caregivers of SMVs with TBI who completed an item pool comprised of 64 questions pertaining to their anger or frustration with accessing military health care services. RESULTS: Exploratory and confirmatory factor analyses supported the retention of 58 items. Constrained graded response model (GRM) overall fit and item fit analyses and differential item functioning investigations of age and education factors supported the retention of 43 items in the final measure. Expert review and GRM item calibration products were used to inform the selection of two 6-item static short forms (TBI-CareQOL Military Health Care Frustration-Self; TBI-CareQOL Military Health Care Frustration-Person with TBI) and to program the TBI-CareQOL Military Health Care Frustration computer adaptive test (CAT). Preliminary data supported the reliability (i.e., internal consistency and test-retest reliability), as well as validity (i.e., convergent, discriminant, and known-groups) of the new measure. CONCLUSIONS: The new TBI-CareQOL Military Health Care Frustration measure can be used to examine caregiver perceptions of and experience with the military health care system, to target improvements.

OBJECTIVE: To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI). DESIGN: New item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing with caregivers of civilians and service members/veterans with TBI, as well as expert review, reading level assessment, and translatability review; existing item banks and new item pools were assessed using an online data capture system. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new caregiver-specific item banks. Known-groups validity was examined using a series of independent samples t tests comparing caregivers of low-functioning vs high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The TBI-CareQOL measurement system (including 5 new measures and 10 existing PROMIS measures). RESULTS: Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses supported the development of 5 new item banks for Feelings of Loss-Self, Feelings of Loss-Person with TBI, Caregiver-Specific Anxiety, Feeling Trapped, and Caregiver Strain. In support of validity, individuals who were caring for low-functioning persons with TBI had significantly worse HRQOL than caregivers that were caring for high-functioning persons with TBI for both the new caregiver-specific HRQOL measures, and for the 10 ...