The Collaborative Improvement and Innovation Network for Children With Medical Complexity.

In response to a number of emerging issues, in 2017 the federal Maternal and Child Health Bureau funded its first collaborative quality improvement network aimed at improving the quality of life for children with medical complexity, the well-being of their families and the cost-effectiveness of their care. This paper is intended as a brief introduction to the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity or CMC CoIIN project. In it, you will learn about the origins of the project, the guiding principles used to cocreate and promote measurable, meaningful family engagement in systems-level change efforts, its goals and objectives, the impact of the coronavirus disease 2019 pandemic on the project and some high-level learnings from our experiences, which have implications for future care delivery improvements for this growing and vulnerable population of children.

Trauma-Informed Leadership in Quality Improvement: What We Learned From Practicing in a Pandemic.

In 2020, midway through the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity project, the coronavirus disease 2019 pandemic erupted and caused significant disruptions for the 10 participating state teams, the project leadership, and collaborative partner organizations. Clinics shut down for in-person care, a scramble ensued to quickly leverage telehealth to fill the gap, and the trauma caused by anxiety, isolation, and exhaustion affected the health and wellbeing of children, families, and clinicians alike. We conducted a series of key informant interviews and surveys, alongside other process measures, to learn from state teams what it was like "on the ground" to try to continue improving care delivery, child quality of life, and family wellbeing under such upheaval. In this article, we synthesize qualitative and descriptive findings from these varied data sources within the framework of the trauma-informed principles we applied as a leadership team to prevent burnout, increase resilience, and maintain progress among all project participants, especially clinicians and the uniquely vulnerable family leaders. Lessons learned will be offered that can be applied to future natural and human-made emergencies that impact responsive pediatric care delivery improvement.

What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change.

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity quality improvement initiative, co-led with family colleagues, illuminates a critical real-world view of systems change to address unintended bias and demystify the medical model of care. We share candid themes in which families describe the need for systems to counteract widespread misconceptions and bias to achieve meaningful system change. We held family-designed, family-led focus groups (N = 127 across 27 groups) within 10 diverse state teams. Families were asked about CMC quality of life and family wellbeing. We transcribed and coded the responses to uncover salient themes. We uncovered 2 major themes from families with direct applicability to systems of care: "What's Missing - Human Dignity" and "What Families Really Need and Recommend in Care." Families shared that valuing each child and creating opportunities for the child and family to enjoy their lives were most important in addressing human dignity in systems of care. They recommended centering the whole child, building relationships of trust and communication, and valuing family-to-family supports to transform the system of care aligned to humanism in care. Families express an urgency for systems to uphold dignity, valuing their child as a whole human being whose quality of life holds meaning and joy, not just as a diagnosis. The highly untenable cost of navigating dehumanizing systems of care reduces quality of life and wellbeing and must be transformed.

Racial and Ethnic Differences in Obesity in People With Spinal Cord Injury: The Effects of Disadvantaged Neighborhood.

OBJECTIVE: To examine the role of neighborhood in the relation between race and obesity in people with spinal cord injury (SCI). DESIGN: A cross-sectional analysis of survey data from National SCI Database linked with neighborhood data from American Community Survey by census tract. SETTING: A total of 17 SCI Model Systems centers. PARTICIPANTS: Individuals (N=3385; 2251 non-Hispanic whites, 760 non-Hispanic blacks, 374 Hispanics) who completed a follow-up assessment during 2006-2017 (mean duration of injury, 8.3±9.9y) and resided in 2934 census tracts. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Body mass index (BMI) (kg/m2). RESULTS: The overall prevalence of obesity was 52.9% (BMI≥25.0) and 23.3% (BMI≥30.0). Hispanics were 67.0% more likely to be obese (BMI≥30.0 kg/m2) relative to non-Hispanic whites (odds ratio, 1.67; 95% confidence interval, 1.27-2.18), after controlling for demographic and injury-related characteristics. Most of the non-Hispanic blacks (66.8%) were living in neighborhoods with high concentrated disadvantaged index (CDI), compared to 35.0% of Hispanics and 9.2% of non-Hispanic whites living in this similar neighborhood status (P<.0001). After accounting for CDI, the odds of being obese in Hispanics decreased (odds ratio, 1.51; 95% confidence interval, 1.15-1.99). Regardless of race and ethnicity, people with SCI from disadvantaged neighborhoods were 42.0%-70.0% more likely to be obese than those from minimal CDI neighborhoods. CONCLUSIONS: Neighborhood characteristics partially diminish racial differences in obesity. Weight management for the SCI population should target those who are Hispanic and living in the disadvantaged neighborhoods.

Wheelchair Breakdowns Are Associated With Pain, Pressure Injuries, Rehospitalization, and Self-Perceived Health in Full-Time Wheelchair Users With Spinal Cord Injury.

OBJECTIVES: To evaluate the relation between wheelchair breakdowns, their immediate consequences, and secondary health complications after spinal cord injury. "Immediate consequences" occur when part of a wheelchair breaks and leaves an individual stranded or injured, or causes him or her to miss medical appointments, work, or school. DESIGN: Survey, cross-sectional. SETTING: Spinal Cord Injury Model Systems Centers. PARTICIPANTS: Full-time wheelchair users (N=771) with SCI from 9 Spinal Cord Injury Model Systems Centers, with data collected between 2011 and 2016. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Incidence of self-reported wheelchair breakdowns within the past 6 months that did or did not result in immediate consequences (ie, injury, being stranded, missing a medical appointment, or an inability to attend school/work); self-perceived health status scale; pain severity numerical rating scale; rehospitalizations; and self-reported pressure injury development within the past 12 months. RESULTS: A total of 610 participants with complete data sets were included in the analyses. When compared to those who reported no breakdowns, participants who reported 1 or more immediate consequences had worse secondary complications: higher self-perceived health status and pain scores (partial -η2=.009-.012, P<.05), and higher odds of rehospitalization (odds ratio: 1.86, P<.05) and pressure injury development (odds ratio: 1.73, P<.05). Secondary health complications were not different in those who reported no immediate consequences compared to those who reported no breakdown. CONCLUSIONS: Wheelchair breakdowns that resulted in injury, being stranded, missing medical appointments, and/or an inability to attend work/school appear to have far-reaching impacts on health and secondary injury. Preventing wheelchair breakdowns, through either better maintenance or manufacturing, may be a means of decreasing secondary disability.

Randomized Trial of a Peer-Led, Telephone-Based Empowerment Intervention for Persons With Chronic Spinal Cord Injury Improves Health Self-Management.

OBJECTIVE: To evaluate the impact of "My Care My Call" (MCMC), a peer-led, telephone-based health self-management intervention in adults with chronic spinal cord injury (SCI). DESIGN: Single-blinded randomized controlled trial. SETTING: General community. PARTICIPANTS: Convenience sample of adults with SCI (N=84; mean time post-SCI, 9.9y; mean age, 46y; 73.8% men; 44% with paraplegia; 58% white). INTERVENTIONS: Trained peer health coaches applied the person-centered health self-management intervention with 42 experimental subjects over 6 months on a tapered call schedule. The 42 control subjects received usual care. Both groups received the MCMC Resource Guide. MAIN OUTCOME MEASURES: Primary outcome-health self-management as measured by the Patient Activation Measure (PAM). Secondary outcomes-global ratings of service/resource use, health-related quality of life, and quality of primary care. RESULTS: Intervention participants averaged 12 calls over 6 months (averaging 21.8min each), with distinct variation. At 6 months, intervention participants reported a significantly greater change in PAM scores (6mo: estimate, 7.029; 95% confidence interval, .1018-13.956; P=.0468) compared with controls, with a trend toward significance at 4 months. At 6 months, intervention participants reported a significantly greater decrease in social/role activity limitations (estimate, -.443; P=.0389), greater life satisfaction (estimate, 1.0091; P=.0522), greater services/resources awareness (estimate, 1.678; P=.0253), greater overall service use (estimate, 1.069; P=.0240), and a greater number of services used (estimate, 1.542; P=.0077). Subgroups most impacted by MCMC on PAM change scores included the following: high social support, white persons, men, 1 to 6 years postinjury, and tetraplegic. CONCLUSIONS: This trial demonstrates that the MCMC peer-led, health self-management intervention achieved a positive impact on self-management to prevent secondary conditions in adults with SCI. These results warrant a larger, multisite trial of its efficacy and cost-effectiveness.

Developing Artificial Neural Network Models to Predict Functioning One Year After Traumatic Spinal Cord Injury.

OBJECTIVE: To develop mathematical models for predicting level of independence with specific functional outcomes 1 year after discharge from inpatient rehabilitation for spinal cord injury. DESIGN: Statistical analyses using artificial neural networks and logistic regression. SETTING: Retrospective analysis of data from the national, multicenter Spinal Cord Injury Model Systems (SCIMS) Database. PARTICIPANTS: Subjects (N=3142; mean age, 41.5y) with traumatic spinal cord injury who contributed data for the National SCIMS Database longitudinal outcomes studies. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Self-reported ambulation ability and FIM-derived indices of level of assistance required for self-care activities (ie, bed-chair transfers, bladder and bowel management, eating, toileting). RESULTS: Models for predicting ambulation status were highly accurate (>85% case classification accuracy; areas under the receiver operating characteristic curve between .86 and .90). Models for predicting nonambulation outcomes were moderately accurate (76%-86% case classification accuracy; areas under the receiver operating characteristic curve between .70 and .82). The performance of models generated by artificial neural networks closely paralleled the performance of models analyzed using logistic regression constrained by the same independent variables. CONCLUSIONS: After further prospective validation, such predictive models may allow clinicians to use data available at the time of admission to inpatient spinal cord injury rehabilitation to accurately predict longer-term ambulation status, and whether individual patients are likely to perform various self-care activities with or without assistance from another person.

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.

Differential Impact and Use of a Telehealth Intervention by Persons with MS or SCI.

OBJECTIVE: The objective of this study was to compare outcomes and patterns of engaging with a telehealth intervention (CareCall) by adult wheelchair users with severe mobility limitations with a diagnosis of multiple sclerosis (MS) or spinal cord injury (SCI). DESIGN: The design of this study is a secondary analysis from a pilot randomized controlled trial with 106 participants with SCI and 36 participants with MS. RESULTS: General linear model results showed that an interaction between baseline depression score and study group significantly predicted reduced depression at 6 mos for subjects with both diagnoses (P = 0.01). For those with MS, CareCall increased participants' physical independence (P < 0.001). No statistically significant differences in skin integrity were found between study groups for subjects with either diagnosis. All participants were similarly satisfied with CareCall, although those with MS engaged in almost double the amount of calls per person than those with SCI (P = 0.005). Those with SCI missed more calls (P < 0.001) and required more extensive support from a nurse (P = 0.006) than those with MS. CONCLUSION: An interactive telephone intervention was effective in reducing depression in adult wheelchair users with either MS or SCI, and in increasing health care access and physical independence for those with a diagnosis of MS. Future research should aim to enhance the efficacy of such an intervention for participants with SCI.

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.

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.

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, associate's 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.

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.

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.

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 person's occupational status or sex did not influence the number of repairs or adverse consequences. CONCLUSIONS: Frequent repairs and breakdown can negatively impact a person's 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.

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 associate's 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.

Patterns of Internet use by persons with spinal cord injuries and relationship to health-related quality of life.

OBJECTIVES: To examine patterns of computer and Internet use among persons with spinal cord injuries (SCI) and to assess the relationship between Internet use and health-related quality of life (HRQOL). DESIGN: Cross-sectional survey design. SETTING: National Model Spinal Cord Injury Systems. PARTICIPANTS: People with SCI enrolled in a national database. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Patterns of Internet use and relationship to HRQOL indicators: self-perceived health status, health status compared with 1 year ago, severity of depression, social integration score, occupation score, contacts with friends, business contacts, and satisfaction with life. RESULTS: Most subjects owned computers, had Internet access, and used the Internet regularly-primarily for email, disability and health information, and shopping. Bivariate analysis revealed significant differences in Internet access based on sociodemographics, particularly among subjects with less education and among African Americans and Hispanics. In initial univariate analysis, most HRQOL indicators were significantly better for Internet users; once sociodemographic factors were included, 4 indicators remained significant. CONCLUSIONS: Complex factors contribute to Internet access among people with SCI, with more barriers among specific subgroups. A significant HRQOL benefit from Internet use is suggested. Targeted interventions and studies of usage patterns are recommended.

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 study's 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.