Bethlyn Houlihan

The impact of Internet access for people with spinal cord injuries: a descriptive analysis of a pilot study

Purpose : A pilot study was undertaken regarding the effect of Internet access on health-related quality of life (HRQoL) and self-reported impact for people with spinal cord injuries (SCI). This study is unique in providing free Internet access and looking at benefits for people with disabilities. Method : HRQoL was measured using indicators of global health and social isolation at baseline and after 6 to 19 months of use via telephone interviews on a convenience sample of 23 adults with SCI. Additionally, monthly telephone surveys measured usage patterns, recreation, and self-reported impact. Both quantitative and qualitative analyses were conducted. Bivariate tests for differences in proportions and paired T-tests were conducted. Qualitatively, conceptual categories of impact were created using the Constant Comparative Method. Results : Qualitatively, the predominant benefit was quality of life, mentioned by 61% of participants 46% of months surveyed, with quantitative trends towards improved emotional health. Ease of access to information, social connection, and quality of information were also frequently reported, with modest support from quantitative data. Conclusions : The studys persuasive qualitative results suggest the Internet has particular benefit to people with disabilities and that rehabilitation goals should include leisure. Further scientific research is strongly warranted.

Computer and Internet Use by Persons After Traumatic Spinal Cord Injury

OBJECTIVE To determine whether computer and internet use by persons post spinal cord injury (SCI) is sufficiently prevalent and broad-based to consider using this technology as a long-term treatment modality for patients who have sustained SCI. DESIGN A multicenter cohort study. SETTING Twenty-six past and current U.S. regional Model Spinal Cord Injury Systems. PARTICIPANTS Patients with traumatic SCI (N=2926) with follow-up interviews between 2004 and 2006, conducted at 1 or 5 years postinjury. INTERVENTIONS Not applicable. RESULTS Results revealed that 69.2% of participants with SCI used a computer; 94.2% of computer users accessed the internet. Among computer users, 19.1% used assistive devices for computer access. Of the internet users, 68.6% went online 5 to 7 days a week. The most frequent use for internet was e-mail (90.5%) and shopping sites (65.8%), followed by health sites (61.1%). We found no statistically significant difference in computer use by sex or level of neurologic injury, and no difference in internet use by level of neurologic injury. Computer and internet access differed significantly by age, with use decreasing as age group increased. The highest computer and internet access rates were seen among participants injured before the age of 18. Computer and internet use varied by race: 76% of white compared with 46% of black subjects were computer users (P<.001), and 95.3% of white respondents who used computers used the internet, compared with 87.6% of black respondents (P<.001). Internet use increased with education level (P<.001): eighty-six percent of participants who did not graduate from high school or receive a degree used the internet, while over 97% of those with a college or associates degree did. CONCLUSIONS While the internet holds considerable potential as a long-term treatment modality after SCI, limited access to the internet by those who are black, those injured after age 18, and those with less education does reduce its usefulness in the short term for these subgroups.

Wheelchair Repairs, Breakdown, and Adverse Consequences for People With Traumatic Spinal Cord Injury

UNLABELLED McClure LA, Boninger ML, Oyster ML, Williams S, Houlihan B, Lieberman JA, Cooper RA. Wheelchair repairs, breakdown, and adverse consequences for people with traumatic spinal cord injury. OBJECTIVES To investigate the frequency of repairs that occurred in a 6-month period and the consequences of breakdowns on wheelchair users living with spinal cord injuries (SCIs), and to determine whether certain wheelchair and subject characteristics are associated with an increased number of repairs and adverse consequences. DESIGN Convenience sample survey. SETTING Sixteen Model Spinal Cord Injury Systems Centers that are part of the national database funded through the Department of Education, National Institute on Disability and Rehabilitation Research. PARTICIPANTS People with SCI who use a wheelchair for more than 40h/wk (N=2213). INTERVENTION Not applicable. MAIN OUTCOME MEASURES The frequency of wheelchair repairs and occurrence of adverse consequences caused by a wheelchair breakdown in a 6-month period. RESULTS Within a 6-month period, 44.8% of full-time wheelchair users completed a repair, and 8.7% had an adverse consequence occur. People who use power wheelchairs required significantly more repairs (P<.001), and adverse consequences occurred more frequently (P<.001) compared with manual wheelchair users. The presence of power seat functions, and a persons occupational status or sex did not influence the number of repairs or adverse consequences. CONCLUSIONS Frequent repairs and breakdown can negatively impact a persons life by decreasing community participation and threatening health and safety. Mandatory compliance with the American National Standards Institute and the Rehabilitation Engineering and Assistive Technology Society of North America standards, changes in insurance reimbursement policy, and patient and clinician education are necessary to reduce the number of repairs and adverse consequences that occur.

Spinal cord injury-functional index: item banks to measure physical functioning in individuals with spinal cord injury.

OBJECTIVES To develop a comprehensive set of patient-reported items to assess multiple aspects of physical functioning relevant to the lives of people with spinal cord injury (SCI), and to evaluate the underlying structure of physical functioning. DESIGN Cross-sectional. SETTING Inpatient and community. PARTICIPANTS Item pools of physical functioning were developed, refined, and field tested in a large sample of individuals (N=855) with traumatic SCI stratified by diagnosis, severity, and time since injury. INTERVENTIONS None. MAIN OUTCOME MEASURE Spinal Cord Injury-Functional Index (SCI-FI) measurement system. RESULTS Confirmatory factor analysis (CFA) indicated that a 5-factor model, including basic mobility, ambulation, wheelchair mobility, self-care, and fine motor function, had the best model fit and was most closely aligned conceptually with feedback received from individuals with SCI and SCI clinicians. When just the items making up basic mobility were tested in CFA, the fit statistics indicated strong support for a unidimensional model. Similar results were demonstrated for each of the other 4 factors, indicating unidimensional models. CONCLUSIONS Though unidimensional or 2-factor (mobility and upper extremity) models of physical functioning make up outcomes measures in the general population, the underlying structure of physical function in SCI is more complex. A 5-factor solution allows for comprehensive assessment of key domain areas of physical functioning. These results informed the structure and development of the SCI-FI measurement system of physical functioning.

Development and initial evaluation of the spinal cord injury-functional index.

OBJECTIVES To describe the calibration of the Spinal Cord Injury-Functional Index (SCI-FI) and report on the initial psychometric evaluation of the SCI-FI scales in each content domain. DESIGN Cross-sectional survey followed by calibration data simulations. SETTING Inpatient and community settings. PARTICIPANTS A sample of participants (N=855) with traumatic spinal cord injury (SCI) recruited from 6 SCI Model Systems and stratified by diagnosis, severity, and time since injury. INTERVENTIONS None. MAIN OUTCOME MEASURE SCI-FI instrument. RESULTS Item response theory analyses confirmed the unidimensionality of 5 SCI-FI scales: basic mobility (54 items), fine motor function (36 items), self-care (90 items), ambulation (39 items), and wheelchair mobility (56 items). All SCI-FI scales revealed strong psychometric properties. High correlations of scores on simulated computer adaptive testing (CAT) with the overall SCI-FI domain scores indicated excellent potential for CAT to accurately characterize functional profiles of adults with SCI. Overall, there was very little loss of measurement reliability or precision using CAT compared with the full item bank; however, there was some loss of reliability and precision at the lower and upper ranges of each scale, corresponding to regions where there were few questions in the item banks. CONCLUSIONS Initial evaluation revealed that the SCI-FI achieved considerable breadth of coverage in each content domain and demonstrated acceptable psychometric properties. The use of CAT to administer the SCI-FI will minimize assessment burden, while allowing for the comprehensive assessment of the functional abilities of adults with SCI.

A pilot study of a telehealth intervention for persons with spinal cord dysfunction

Study design:Single-blind randomized controlled trial of 6 months’ duration.Objectives:To evaluate the efficacy of a novel telehealth intervention, ‘CareCall’, on reducing pressure ulcers and depression and enhancing the use of appropriate health care.Setting:General community, Massachusetts and Connecticut, United StatesMethods:‘CareCall’ is an automated, interactive voice response system that combines patient education, cognitive behavioral interventions, screening and referrals, with alerts to a nurse telerehabilitation coordinator for direct non-emergent phone follow up. Participants consisted of a convenience sample of 142 persons with multiple sclerosis or spinal cord injury using a wheelchair >6 h per day. The intervention group received CareCall (n=71) The control group received usual care (n=71). The main outcome measures were: The pressure ulcer scale for healing tool, Patient Health Questionnaire—9 depression scale, Cornell Services Index and Craig Hospital Inventory of Environmental Factors-Short Form Question 5.Results:CareCall achieved a reduction in presence of pressure ulcers at 6 months in women (P<0.0001). Among those with baseline depression, CareCall reduced 6-month severity of depression, adjusting for age and gender (P<0.047). CareCall did not have a significant impact on health-care utilization (OR=1.8, P=0.07), but did significantly improve participants’ report of health-care availability (OR=2.03, P<0.04).Conclusion:This is the first study to demonstrate the efficacy of a largely automated telehealth intervention for adults with spinal cord dysfunction. Future research needs to replicate this study in a larger, multisite trial.

Marital Status, Marital Transitions, Well-Being and Spinal Cord Injury: An Examination of the Effects of Sex and Time

OBJECTIVE To examine the applicability of marital resource (marriage has substantial benefits for well-being over not being married) or marital crisis (marital dissolution leads to poorer well-being) models to the spinal cord injury (SCI) population by studying the effects of sex, marital status, and marital transitions on well-being. DESIGN Prospective cohort study from the SCI Model Systems National Database. SETTING Community. PARTICIPANTS Men (n=4864) and women (n=1277) who sustained traumatic SCI and completed a minimum of 1 follow-up interview beginning at 1 year through 15 years postinjury. INTERVENTIONS None. MAIN OUTCOMES MEASURES Life satisfaction, depressive symptoms, and self-perceived health status by using linear mixed models for longitudinal data. RESULTS In general, well-being improved over time since injury. Hypothesis testing supported the marital crisis model, as marital loss through being or becoming separated or divorced and being or becoming widowed, had the most consistent and negative impact across well-being outcomes, whereas being or becoming married had an advantage for only lower depression symptoms over time. However, marital dissolution or loss did not have a uniformly adverse impact on well-being outcomes, and this effect often was moderated by sex, such that widows had higher depressive symptoms and poorer self-perceived health than widowers, but separated or divorced women had higher life satisfaction and self-perceived health than men. Irrespective of sex, being separated or divorced versus being single was associated with higher depressive symptoms over time. CONCLUSIONS Results support the marital crisis model and that women and men can experience marital dissolution differently. All marital loss does not result in compromised well-being and all marriage does not enhance well-being, highlighting complex dynamics worthy of further investigation in this population.

Patterns, predictors, and associated benefits of driving a modified vehicle after spinal cord injury: Findings from the National Spinal Cord Injury Model Systems

OBJECTIVES To investigate the patterns, predictors, and benefits associated with driving a modified vehicle for people with spinal cord injuries (SCIs). DESIGN Cross-sectional retrospective survey design. SETTINGS Sixteen Model SCI Systems (MSCISs) throughout the United States. PARTICIPANTS People (N=3726) post-SCI from the National MSCIS Database. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Driving, employment, and community reintegration post-SCI. RESULTS The study found that 36.5% of the sample drove a modified vehicle after SCI. Significant predictors of driving a modified vehicle post-SCI included married at injury, younger age at injury, associates degree or higher before injury, paraplegia, a longer time since the injury, non-Hispanic race, white race, male sex, and using a wheelchair for more than 40 hours a week after the injury (accounting for 37% of the variance). Higher activity of daily living independence (in total motor function) at hospital discharge also increased the odds of driving. Driving increased the odds of being employed at follow-up by almost 2 times compared with not driving postinjury (odds ratio, 1.85). Drivers tended to have higher community reintegration scores, especially for community mobility and total community reintegration. Driving was also associated with small health-related quality-of-life gains, including less depression and pain interference and better life satisfaction, general health status, and transportation availability scores. CONCLUSIONS The associated benefits of driving and the relatively low percentage of drivers post-SCI in the sample provide evidence for the need to increase rehabilitation and assistive technology services and resources in the United States devoted to facilitating driving after SCI.

Empowering Adults With Chronic Spinal Cord Injury to Prevent Secondary Conditions

OBJECTIVE To develop and assess the feasibility of My Care My Call, an innovative peer-led, community-based telephone intervention for individuals with chronic spinal cord injury (SCI) using peer health coaches. DESIGN Qualitative pilot study. SETTING General community. PARTICIPANTS Convenience sample of consumer advocates with traumatic SCI ≥1 year postinjury (N=7). INTERVENTIONS My Care My Call applies a health empowerment approach for goal-setting support, education, and referral to empower consumers in managing their preventive health needs. For feasibility testing, peer health coaches, trained in brief action planning, called participants 6 times over 3 weeks. MAIN OUTCOME MEASURES Identified focus areas were acceptability, demand, implementation, and practicality. Participant outcome data were collected through brief after-call surveys and qualitative exit interviews. Through a custom website, peer health coaches documented call attempts, content, and feedback. Analysis applied the constant comparative method. RESULTS My Care My Call was highly feasible in each focus area for participants. Concerning acceptability, participants were highly satisfied, rating peer health coaches as very good or excellent in 80% of calls; felt My Care My Call was appropriate; and would continue use. Regarding demand, participants completed 88% of scheduled calls; reported that My Care My Call fills a real need; and would recommend it. Considering implementation, peer health coaches made 119% of expected calls, with a larger focus on compiling individualized resources. For practicality, call duration averaged 29 minutes, with 1 hour of additional time for peer health coaches. Participant effects included feeling supported, greater confidence toward goals, and greater connection to resources. Subsequently, several process changes enhanced peer health coach training and support through role-plays, regular support calls, and streamlined My Care My Call support materials. CONCLUSIONS After process changes, a randomized controlled trial to evaluate My Care My Call is underway.

A telerehabilitation intervention for persons with spinal cord dysfunction.

Pressure ulcers and depression are common preventable conditions secondary to a spinal cord dysfunction. However, few successful, low-cost preventive approaches have been identified. We have developed a dynamic automated telephone calling system, termed Care Call, to empower and motivate people with spinal cord dysfunction to improve their skin care, seek treatment for depression, and appropriately use the healthcare system. Herein, we describe the design and development of Care Call, its novel features, and promising preliminary results of our pilot testing. Voice quality testing showed that Care Call was able to understand all voice characteristics except very soft-spoken speech. Importantly, pilot study subjects felt Care Call could be particularly useful for people who are depressed, those with acute injury, and those without access to quality care. The results of a randomized controlled trial currently underway to evaluate Care Call will be available in 2011.