1. New England Regional Spinal Cord Injury Center Overview of Past Research and Current Research Opportunities March 9, 2006

2. About NERSCIC Est.1955 as research arm of BMC’s Dpt. Of Rehabilitation Services, with one of Northeast’s largest spinal cord injury [SCI] rehab unitsEst.1955 as research arm of BMC’s Dpt. Of Rehabilitation Services, with one of Northeast’s largest spinal cord injury [SCI] rehab units Conducts socio-medical research and educational programsConducts socio-medical research and educational programs One of 16 National Model Spinal Cord Injury Systems, designated by NIDRROne of 16 National Model Spinal Cord Injury Systems, designated by NIDRR

3. NERSCIC Projects National SCI DatabaseNational SCI Database Employment Assistance ProjectEmployment Assistance Project Pain and Employment StudyPain and Employment Study Building Access StudyBuilding Access Study The Internet and people with SCIThe Internet and people with SCI

4. National SCI Database: Purpose ~250 participants from BMC~250 participants from BMC To ID & evaluate trends over time in: etiology, sociodemographics, injury severity, health services delivery, treatmentTo ID & evaluate trends over time in: etiology, sociodemographics, injury severity, health services delivery, treatment To establish standards of treatmentTo establish standards of treatment To facilitate other research (i.e. clinical trials)To facilitate other research (i.e. clinical trials)

5. National SCI Database: Methods Two data collection instrumentsTwo data collection instruments Post-dischargePost-discharge –medical record, physiatrist –Demographics, acute care & rehab received, treatment outcomes Phone interview @ 1 yr & every 5 th year thereafterPhone interview @ 1 yr & every 5 th year thereafter –Change at Year 1, health status, psychosocial status –FIM, CHART, CHIEF, Patient Health Questionnaire

6. Employment Assistance Project: Specific Aims 1) Develop and critically evaluate flexible, comprehensive interventions 2) Document the development and implementation of that intervention 3) Disseminate findings to audiences of consumers, academic medical centers, health and rehabilitation professional agencies, and employers.

7. Employment Assistance: Intervention For chronically unemployedFor chronically unemployed (>1 year of active search) (>1 year of active search) Assigned a job coach and peer mentor for regular contact for one yearAssigned a job coach and peer mentor for regular contact for one year Community agency partnerships: MRC, Project Impact, Resource Partnership, etc.Community agency partnerships: MRC, Project Impact, Resource Partnership, etc. Set up transportation, benefits analysis—anything goesSet up transportation, benefits analysis—anything goes

8. Employment Assistance: Agencies & Focus Groups Difficulty engaging participants—needed more infoDifficulty engaging participants—needed more info Conducted agency interviewsConducted agency interviews Conducted 2 focus groups: employed and unemployedConducted 2 focus groups: employed and unemployed Will analyze facilitators & barriers as related to the Transtheoretical ModelWill analyze facilitators & barriers as related to the Transtheoretical Model

9. Pain, Employment, and Assistance: Hypotheses Hypothesis 1: Higher reported pain intensity and pain interference will decrease hours spent in employment.Hypothesis 1: Higher reported pain intensity and pain interference will decrease hours spent in employment. Hypothesis 2: Given similar functional scores, hours of assistance will facilitate participation for people who report more severe pain and more pain interference.Hypothesis 2: Given similar functional scores, hours of assistance will facilitate participation for people who report more severe pain and more pain interference.

10. Pain, Employment, and Assistance: Methods Traumatic SCI >2 years post-injury, ages 18-64Traumatic SCI >2 years post-injury, ages 18-64 Telephone interviewTelephone interview 121 participants nationally121 participants nationally Etiology, sociodemographics, CHART, CHIEF, open-ended questions related to impact of pain and potential mediatorsEtiology, sociodemographics, CHART, CHIEF, open-ended questions related to impact of pain and potential mediators Data analysis currently underwayData analysis currently underway

11. Building Access Study: Design 30 buildings and facilities in Boston area in 4 categories: civic, educational, transportation, cultural/recreational30 buildings and facilities in Boston area in 4 categories: civic, educational, transportation, cultural/recreational Research team members:Research team members: –1: (WC) mobility impaired wheelchair user –2: (MI) mobility impaired, cane user –3: (VI) visually impaired –4: Control, no known impairments

12. Hypotheses: 1. Control will report highest performance for all measures1. Control will report highest performance for all measures 2. WC user will do better on all outcomes than MI and VI2. WC user will do better on all outcomes than MI and VI 3. Those reporting more barriers will have a lower rate of task performance than those who do not3. Those reporting more barriers will have a lower rate of task performance than those who do not

13. “Challenge” Protocol Tasks performed by each team member, parallels ADA: Enter buildingEnter building Use restroomsUse restrooms Use public telephonesUse public telephones Use drinking fountainsUse drinking fountains Access seatingAccess seating Site-specific tasks varied according to building typeSite-specific tasks varied according to building type

14. Structural Barriers: All team members reported wayfinding barriers, BUT VI and control reported higher percentages (59% and 58%) than MI (26%) and WC (10%) due to poor signage, lighting and confusing layoutsAll team members reported wayfinding barriers, BUT VI and control reported higher percentages (59% and 58%) than MI (26%) and WC (10%) due to poor signage, lighting and confusing layouts Amenity, interpersonal and other barriers less frequently encounteredAmenity, interpersonal and other barriers less frequently encountered

15. Facilitators Overall, facilitators were high compared to barriersOverall, facilitators were high compared to barriers WC and VI reported the most facilitatorsWC and VI reported the most facilitators MI reported lowest facilitatorsMI reported lowest facilitators Though results are statistically significant, differences may be due to different reporting standards between subjectsThough results are statistically significant, differences may be due to different reporting standards between subjects

16. Summary of Findings Hyp. 1: Control’s performance score (100%) did not differ greatly from MI (98%) and VI (97%)Hyp. 1: Control’s performance score (100%) did not differ greatly from MI (98%) and VI (97%) Hyp. 2: WC reported lowest performance score (81%)Hyp. 2: WC reported lowest performance score (81%) Hyp. 3: Linear relationship b/n barriers and score; exc: MI = high barriers, but high performanceHyp. 3: Linear relationship b/n barriers and score; exc: MI = high barriers, but high performance

17. NERSCIC Internet Projects Pilot MSN TV* StudyPilot MSN TV* Study National SCI Technology SurveyNational SCI Technology Survey The SCI Guide OnlineThe SCI Guide Online Internet Access Group ProjectInternet Access Group Project *Copyright: Microsoft Corporation

18. Pilot MSN TV Study

19. MSN TV Study Questions 1.How is quality of life [QoL] affected by Internet use? 2.How do participants describe the effects of Internet access?

20. MSN TV Study Description Provided first-time Internet access to people with SCI at home (N=26)Provided first-time Internet access to people with SCI at home (N=26) MSN TV: like a cable box, with television as monitorMSN TV: like a cable box, with television as monitor Measured QoL at 3 and 6 monthsMeasured QoL at 3 and 6 months Analyzed qualitative commentsAnalyzed qualitative comments

21. MSN TV Study Results: Question 1 How is QoL affected by Internet use? TRENDS seen by each QoL component:TRENDS seen by each QoL component: 1.Global health: decline in physical health; improvement in mental health 2.Social isolation: decrease in contact; increase in romantic/sexual relationships 3.Recreation: Statistically significant decrease in solitary activities; increase in social activities

22. MSN TV Study Results: Q. 1

23. MSN TV Study Results: Question 2 How do participants describe the effects of Internet access [benefits/risks]? Has access to the Internet affected you in any way?Has access to the Internet affected you in any way? 1.Yes, a lot 3. No, not much 2.Yes, somewhat4. No, not at all For 1,2,or 3, how has it affected you? Grouped by theme and ranked by frequencyGrouped by theme and ranked by frequency

24. MSN TV Study Results: Question 2 Most important benefits of Internet useMost important benefits of Internet use (in order): 1.Improved Quality of Life 2.Ease of Access to Information 3.Social Connection 4.Quality Information Available

25. MSN TV Study Results: Question 2 1. Improved Quality of Life –“It’s a wonderful pastime. It actually distracts my mind off some of my discomfort. I don’t want medication, I’d rather be distracted. I have spinal cord pain, [the Internet] gets myself out of myself.” –“I have more to look forward to, it makes me happier. It’s something different, more than just the same old grind. I’ve gotten more interested in what’s going on.”

26. MSN TV Study Results: Question 2 2. Ease of Access to Information –“Anything that I’m interested in, I can look up…I don’t get all stressed out. It’s not easy for a quadriplegic to flip through the Yellow Pages, so using the [Internet] is easier.” –“Whenever I need something I’m not sure of, it’s right there…It’s just opened up doors…It’s opened my eyes…to things and places I couldn’t have seen before.”

27. MSN TV Study Results: Question 2 3. Social Connection –“Being able to connect with people, learn through people, make friends. The Web allows me to trust other people more without having to see them… Communication, understanding people better. I share more than through other forms [of communication]. I share intimacy, share problems and losses…It helps unload frustration. I’m frustrated with the scars on my face due to the accident.”

28. MSN TV Study Results: Question 2 4. Quality Information Available (health, transportation, employment) –“The more I look, the more I find. The more I find, the more I learn. The more I learn, the “more better” my life becomes…I have found many sites which send e-mail newsletter updates which I further review, sort them out, and discard and select. Then I put them to use.”

29. Pilot MSN TV Study Limitations Measures not adequate to capture impact (ie. empowerment)Measures not adequate to capture impact (ie. empowerment) Small numbers—difficult to interpret quantitative results beyond “trends”Small numbers—difficult to interpret quantitative results beyond “trends” High drop-out rate: 10/33 withdrew; 6/10 got computers for Internet access insteadHigh drop-out rate: 10/33 withdrew; 6/10 got computers for Internet access instead Equipment failureEquipment failure

30. National SCI Technology Survey

31. Technology Survey Description Follow up to Pilot MSN TV Study using large national sample (N=520)Follow up to Pilot MSN TV Study using large national sample (N=520) Cross-sectional survey re: computer/Internet useCross-sectional survey re: computer/Internet use Analyzed relationship between frequency of use and QoL (self- perceived health status, satisfaction with life, emotional well-being, social integration)Analyzed relationship between frequency of use and QoL (self- perceived health status, satisfaction with life, emotional well-being, social integration)

32. Tech Survey Users vs. Nonusers Significant difference by age, race, education, employment status, incomeSignificant difference by age, race, education, employment status, income –Race Black=29%; Hispanic=32% vs. White=62%Black=29%; Hispanic=32% vs. White=62% –Educational level <8 th =9%; <H.S.=35%; H.S.=50%; Assoc/Bach=79%; Grad=89%<8 th =9%; <H.S.=35%; H.S.=50%; Assoc/Bach=79%; Grad=89%

33. Technology Survey vs Pilot Results: Q. 1 MSN TV 10.6 hrs/wk for:10.6 hrs/wk for: 1.Email 86% 2.Web Surfing 80% Health Info 56%Health Info 56% General Info 65%General Info 65% Entertainment 64%Entertainment 64% 3.Chat Rooms 26% 4.Shopping 35% 5.Employment Info 5% 62.4% use at least monthly for: 1.Email 80% 2.Web Surfing N/A Health Info 35% Other 47% Entertainment 28% 3.Chat Rooms 9% 4.Shopping 32% 5.Employment Info 23% How do people with SCI use the Internet? Technology

34. Technology Survey Results: Q. 2 vs Pilot How is QoL affected by Internet use? Significant correlation between frequency of Internet use and:Significant correlation between frequency of Internet use and: –Self-perceived health status –Satisfaction with life –Feeling down/depressed/hopeless –Contact with friends –Contact with businesses Only business contacts is significant after controlling for age, race, etc.Only business contacts is significant after controlling for age, race, etc.

35. Technology Survey Results: Other Findings Internet used for communication, info, commerceInternet used for communication, info, commerce Fairly high access (65%) and use (62%)Fairly high access (65%) and use (62%) Certain subgroups w/more access barriers—need outreachCertain subgroups w/more access barriers—need outreach Pain is an important modifierPain is an important modifier Scientific studyScientific study –Control group or before-after survey –Specific intervention

36. The SCI Guide: www.bu.edu/sciguide Goal: to connect users with SCI to quality peer-reviewed resources on the Internet, esp. newly injured and technophobesGoal: to connect users with SCI to quality peer-reviewed resources on the Internet, esp. newly injured and technophobes Consumers evaluate Internet resourcesConsumers evaluate Internet resources Develop disability-specific rating system for websitesDevelop disability-specific rating system for websites Create a comprehensive, analytical guide for the SCI community that is user-friendly and self perpetuatingCreate a comprehensive, analytical guide for the SCI community that is user-friendly and self perpetuating

37. Comments from Peer Reviewers Unbridled access; valuable health- related info as well as general health info and entertainment.Unbridled access; valuable health- related info as well as general health info and entertainment. Do most of my research for work.Do most of my research for work. Has made life a lot easier. It’s made all types of info more obtainable.Has made life a lot easier. It’s made all types of info more obtainable. Allows me to do things without having people do it for me.Allows me to do things without having people do it for me.

38. Peer Reviewer Comments (Cont’d) I keep connected with my friends via my website and email, and I do shopping and rent movies online.I keep connected with my friends via my website and email, and I do shopping and rent movies online. Provides access to numerous resources. I can shop for items at home, pay bills, reconcile bank account information, access credit card accounts, sell items on e-bay, and research any subject imaginable.Provides access to numerous resources. I can shop for items at home, pay bills, reconcile bank account information, access credit card accounts, sell items on e-bay, and research any subject imaginable.

39. Internet Access Group Project Provide Internet training to newly injured patients with SCI during initial acute rehabilitation stayProvide Internet training to newly injured patients with SCI during initial acute rehabilitation stay Provide free Internet access in patient’s home post-dischargeProvide free Internet access in patient’s home post-discharge Evaluate satisfaction and physical and emotional health—LATEREvaluate satisfaction and physical and emotional health—LATER

40. Extension Year Oct ’05 to Sept ‘06 Ways You Can Get Involved

41. Extension Year Projects Secondary data analysis building on previous projectsSecondary data analysis building on previous projects MSCIS National DatabaseMSCIS National Database –Number and Consequences of Wheelchair Breakdowns –Pain, participation, and assistance Functional Access vs. ADA Compliance of Public BuildingsFunctional Access vs. ADA Compliance of Public Buildings Dissemination and applied research projectsDissemination and applied research projects

42. Wheelchair Breakdowns: Goals Explore and document the consequences of wheelchair breakdowns for people with SCI, and to understand impact on selected QoL measures, as well as factors that may contribute to wheelchair breakdowns and consequences.Explore and document the consequences of wheelchair breakdowns for people with SCI, and to understand impact on selected QoL measures, as well as factors that may contribute to wheelchair breakdowns and consequences.

43. Wheelchair Breakdowns: Variables of Interest Descriptive stats  bivariate analysis  multivariate analysis 1)# wheelchair breakdowns in past 6 months 2) Consequences –Stranded –Injured –Missed work or school –Missed med. Appt. 3) Sociodemographics, QoL outcomes (incl. medical)

44. Pain, participation, and assistance Similar hyp., exc. looking at thresholds, paid & unpaid assistance, & total participation.Similar hyp., exc. looking at thresholds, paid & unpaid assistance, & total participation. Hyp. 1: Higher pain intensity and pain interference = lower total participation & recreational activities.Hyp. 1: Higher pain intensity and pain interference = lower total participation & recreational activities. Hyp. 2: Given similar functional scores, a certain threshold of assistance will facilitate participation for more severe pain and more pain interference.Hyp. 2: Given similar functional scores, a certain threshold of assistance will facilitate participation for more severe pain and more pain interference.

45. Functional Access vs. ADA: Goals Does ADA compliance mean functional access? Compare scoresDoes ADA compliance mean functional access? Compare scores Establish hierarchy of functional access; building entrance accessibility is paramountEstablish hierarchy of functional access; building entrance accessibility is paramount Generic task completion vs. building specificGeneric task completion vs. building specific Distinguish impact of reported facilitators/barriers on scoresDistinguish impact of reported facilitators/barriers on scores

46. Functional Access vs. ADA: Hypotheses H1-1: As functional access scores increase, these scores are more likely to be positively correlated with ADA compliance scores.H1-1: As functional access scores increase, these scores are more likely to be positively correlated with ADA compliance scores. H1-2: For participants with impairments, as functional access scores decrease, these scores are less likely to be correlated with ADA compliance scores.H1-2: For participants with impairments, as functional access scores decrease, these scores are less likely to be correlated with ADA compliance scores.

47. Functional Access vs. ADA: Hypotheses (cont’d) H2-1: For all participants, generic task completion is more likely to be positively correlated with ADA scores than building-specific.H2-1: For all participants, generic task completion is more likely to be positively correlated with ADA scores than building-specific. H2-2: For those w/ impairments not able to enter the building, avg. ADA scores will be no different from participants able to enter.H2-2: For those w/ impairments not able to enter the building, avg. ADA scores will be no different from participants able to enter. H3-1: Interpersonal facilitators/ barriers will have a large impact on functional access but not on ADA scores.H3-1: Interpersonal facilitators/ barriers will have a large impact on functional access but not on ADA scores.

48. Research Opportunities Hours/week flexibleHours/week flexible Involvement based on interests and skillsInvolvement based on interests and skills Database managementDatabase management Data cleaning and analysisData cleaning and analysis Assistance with manuscript preparation: lit review, journal research, section edits, writing, develop tables and figures, etc.Assistance with manuscript preparation: lit review, journal research, section edits, writing, develop tables and figures, etc. If interested, talk to me!If interested, talk to me!

49. Other Projects QoL tool development w/ GaylordQoL tool development w/ Gaylord SCI Research Conference—Nov. 19 thSCI Research Conference—Nov. 19 th Launch Party for SCI GuideLaunch Party for SCI Guide 2 nd Employment paper2 nd Employment paper Manual for Internet as a treatment modalityManual for Internet as a treatment modality Resource manual for evidence-based community reintegrationResource manual for evidence-based community reintegration Dissemination: research briefs, presentations to design professionals and others, website postings, etc.Dissemination: research briefs, presentations to design professionals and others, website postings, etc.

50. Contact Information Bethlyn Houlihan Senior Project Manager Room F511 (617) 638-7380 Bethlyn.Houlihan@bmc.org

51. Contact Information Naomi Goodman Research Coordinator Room F511 (617) 638-738-7387 Naomi.Goodman@bmc.org