People with spinal cord injury in Morocco: results from the very first systematic data collection

Background An estimated 42,000 people currently living with chronic spinal cord injury (SCI) are veterans. SCI was a common combat-related injury in the World Wars and Vietnam era and now affects more than 11% of military personnel injured in Operation Iraqi Freedom and Operation Enduring Freedom. The Veterans Benefits Administration primarily offers financial compensation for disabilities sustained or re-aggravated during military service, called service-connected disability compensation. With the overwhelming cost of living with an SCI, this monthly financial compensation can provide service-connected veterans and their families with access to additional supportive resources (eg, assistive devices and personal aide) and maintain their quality of life (QOL). Little is known about personal, health, functional, and QOL outcomes associated with service-connected and nonservice-connected status for veterans living with an SCI. Objective The aim of this study is to compare the ways in which Veterans Affairs’ (VA) service-connected and nonservice-connected status may be associated with health and functional outcomes, choice of health care provider, and overall QOL for veterans living with an SCI and their caregivers. Methods This cross-sectional qualitative study will gather data using retrospective chart reviews, semistructured interviews, and focus groups. After obtaining institutional review board (IRB) approval, purposeful sampling techniques will be used to recruit and enroll the following key stakeholders: veterans living with an SCI, family caregivers, and SCI health care providers. Concurrent data collection will take place at 2 sites: Veterans Administration New Jersey Healthcare System and Northern New Jersey Spinal Cord Injury System. Results This study was funded in July 2015. IRB approval was obtained by November 2016 at both sites. Enrollment and data collection for phase 1 to phase 4 are complete. A total of 69 veterans, 18 caregivers, and 19 SCI clinicians enrolled in the study. Data analyses for these phases are underway. In phase 5, the follow-up focus group activities are scheduled. The final results are expected by the end of 2019. Conclusions The factors that contribute to veterans living with SCI seeking and not seeking VA disability compensation benefits are not well understood in rehabilitation research. Triangulation of these data sources will allow us to compare, contrast, and integrate the results, which can be used to develop clinical guidelines, caregiver training, and patient education programs. International Registered Report Identifier (IRRID) DERR1-10.2196/14039

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Challenges to the Standardization of Trauma Data Collection in Burn, Traumatic Brain Injury, Spinal Cord Injury, and Other Trauma Populations: A Call for Common Data Elements for Acute and Longitudinal Trauma Databases

Archives of Physical Medicine and Rehabilitation ◽

10.1016/j.apmr.2018.10.004 ◽

2019 ◽

Vol 100 (5) ◽

pp. 891-898

Author(s):

Laura C. Simko ◽

Liang Chen ◽

Dagmar Amtmann ◽

Nicole Gibran ◽

David Herndon ◽

...

Keyword(s):

Traumatic Brain Injury ◽

Spinal Cord ◽

Spinal Cord Injury ◽

Brain Injury ◽

Data Collection ◽

Common Data Elements ◽

Cord Injury ◽

Data Elements

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Spinal Cord Injury Veterans’ Disability Benefits, Outcomes, and Health Care Utilization Patterns: Protocol for a Qualitative Study (Preprint)

10.2196/preprints.14039 ◽

2019 ◽

Author(s):

Denise C Fyffe ◽

Joyce Williams ◽

Paul Tobin ◽

Carol Gibson-Gill

Keyword(s):

Health Care ◽

Spinal Cord ◽

Spinal Cord Injury ◽

New Jersey ◽

Data Collection ◽

Qualitative Study ◽

Care Providers ◽

Financial Compensation ◽

Cord Injury ◽

Disability Compensation

BACKGROUND An estimated 42,000 people currently living with chronic spinal cord injury (SCI) are veterans. SCI was a common combat-related injury in the World Wars and Vietnam era and now affects more than 11% of military personnel injured in Operation Iraqi Freedom and Operation Enduring Freedom. The Veterans Benefits Administration primarily offers financial compensation for disabilities sustained or re-aggravated during military service, called service-connected disability compensation. With the overwhelming cost of living with an SCI, this monthly financial compensation can provide service-connected veterans and their families with access to additional supportive resources (eg, assistive devices and personal aide) and maintain their quality of life (QOL). Little is known about personal, health, functional, and QOL outcomes associated with service-connected and nonservice-connected status for veterans living with an SCI. OBJECTIVE The aim of this study is to compare the ways in which Veterans Affairs’ (VA) service-connected and nonservice-connected status may be associated with health and functional outcomes, choice of health care provider, and overall QOL for veterans living with an SCI and their caregivers. METHODS This cross-sectional qualitative study will gather data using retrospective chart reviews, semistructured interviews, and focus groups. After obtaining institutional review board (IRB) approval, purposeful sampling techniques will be used to recruit and enroll the following key stakeholders: veterans living with an SCI, family caregivers, and SCI health care providers. Concurrent data collection will take place at 2 sites: Veterans Administration New Jersey Healthcare System and Northern New Jersey Spinal Cord Injury System. RESULTS This study was funded in July 2015. IRB approval was obtained by November 2016 at both sites. Enrollment and data collection for phase 1 to phase 4 are complete. A total of 69 veterans, 18 caregivers, and 19 SCI clinicians enrolled in the study. Data analyses for these phases are underway. In phase 5, the follow-up focus group activities are scheduled. The final results are expected by the end of 2019. CONCLUSIONS The factors that contribute to veterans living with SCI seeking and not seeking VA disability compensation benefits are not well understood in rehabilitation research. Triangulation of these data sources will allow us to compare, contrast, and integrate the results, which can be used to develop clinical guidelines, caregiver training, and patient education programs. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/14039

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Are intensive data collection methods in pain research feasible in those with physical disability? A study in persons with chronic pain and spinal cord injury

Quality of Life Research ◽

10.1007/s11136-016-1494-0 ◽

2017 ◽

Vol 26 (3) ◽

pp. 587-600 ◽

Cited By ~ 6

Author(s):

A. L. Kratz ◽

C. Z. Kalpakjian ◽

R. A. Hanks

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Chronic Pain ◽

Data Collection ◽

Physical Disability ◽

Data Collection Methods ◽

Pain Research ◽

Cord Injury ◽

Collection Methods

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The impact of COVID-19 related restrictions on social and daily activities of parents, people with disabilities and older adults: Protocol for a longitudinal, mixed-methods study. (Preprint)

10.2196/preprints.28337 ◽

2021 ◽

Author(s):

Holly Reid ◽

William Cameron Miller ◽

Elham Esfandiari ◽

Somayyeh Mohammadi ◽

Isabelle Rash ◽

...

Keyword(s):

Older Adults ◽

Spinal Cord ◽

Spinal Cord Injury ◽

British Columbia ◽

Mixed Methods ◽

Data Collection ◽

Mixed Methods Study ◽

Daily Activities ◽

Time Points ◽

Cord Injury

UNSTRUCTURED Introduction: The COVID-19 pandemic has led to wide-scale changes in societal organization. This has dramatically altered people’s daily activities, especially among families with young children, those living with disabilities such as spinal cord injury (SCI), those who have experienced a stroke, and older adults. We aim to 1) investigate how COVID restrictions influence daily activities 2) track the psychosocial effects of these restrictions over time; and 3) identify strategies to mitigate the potential negative effects of these restrictions. Methods and analysis: This project is a longitudinal concurrent mixed-methods study in British Columbia, Canada. Data collection occurred at four time points, between April 2020 and February 2021. The first three data collection time points occurred within phases 1-3 of the Province of British Columbia Restart Plan. The final data collection coincided with the initial distribution of the COVID-19 vaccines. At each time point, participants’ socio-demographics, depressive and anxiety symptoms, resilience, boredom, social support, instrumental activities of daily living, and social-media and technology use were collected in an online survey. These data supplemented qualitative videoconference interviews exploring participants’ COVID-19 related experiences. Participants were also asked to upload photos representing their experience during the restriction period, which facilitated discussion during the final interview. We recruited five groups of participants: 1) families with children under the age of 18, 2) adults who have a spinal cord injury (SCI), 3) experienced a stroke or 4) other types of disabilities, and 5) older adults (>64 years) with no self-reported disability. The total sample size is 82. We are limited in the number of participants we could recruit from each group, which may make some sub-group analyses challenging. Ethics and dissemination: Findings from our study will inform the development and recommendation of a new resource guide for the post-COVID period and for future public health emergencies.

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