1. The Internet as a Treatment Modality New England Regional Spinal Cord Injury Center at Boston Medical Center ASIA-ISCoS Meeting Boston, MA June 27, 2006

2. Learning Objectives 1)Participants will be able to identify the evidence and rationale for use of the Internet as a treatment modality in the rehabilitation of patients with SCI. 2)Participants will understand how to design and implement a weekly curriculum with patients with SCI in his/her rehabilitation setting.

3. Introduction: Why the Internet? The growing scope of independence for people with disabilitiesThe growing scope of independence for people with disabilities Internet access crucial to societal participation and functional independenceInternet access crucial to societal participation and functional independence Experts highlighting Internet’s relevance to OTExperts highlighting Internet’s relevance to OT

4. Research Review: Patient Education Nearly all with positive resultsNearly all with positive results Critical review of acceptability and usefulness of computerized interventions for pwd (Krishna et al, 1997)Critical review of acceptability and usefulness of computerized interventions for pwd (Krishna et al, 1997) –All diabetes: lowered blood glucose Inpatient breast cancer study w/ controls (N=162) (Lampe, 2004)Inpatient breast cancer study w/ controls (N=162) (Lampe, 2004) –Int grp: more home Internet use, helped Independent skin care promotion for adults with paraplegia—across- subjects design (Pellerito, 2003)Independent skin care promotion for adults with paraplegia—across- subjects design (Pellerito, 2003)

5. Research Review: Psychosocial Outcomes & Functional Independence Small, randomized trial re: computer access & training w/ older adults for improved psychosocial outcomes (White et al, 2002)Small, randomized trial re: computer access & training w/ older adults for improved psychosocial outcomes (White et al, 2002) TBI computer knowledge training for improved daily function-- nonexperimental (Ivanoff, 2002)TBI computer knowledge training for improved daily function-- nonexperimental (Ivanoff, 2002) Case-control study of computer- assisted training improved wheelchair mobility on obstacle course (Webster et al, 2001)Case-control study of computer- assisted training improved wheelchair mobility on obstacle course (Webster et al, 2001)

6. Research on Relevant Rehabilitation Topics Health information accessHealth information access Vocational trainingVocational training Social support and communicationSocial support and communication

7. 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

8. Pilot 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?

9. 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 comments into domains by number and frequencyAnalyzed qualitative comments into domains by number and frequency

10. 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

11. MSN TV Study Results: Q. 1

12. 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

13. MSN TV Study Results: Question 2 Most important benefits of Internet use (in order):Most 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

14. 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.”

15. 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.”

16. 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.”

17. 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.”

18. 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

19. National SCI Technology Survey 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)

20. 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%

21. 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

22. 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 adjusting for age, race, etc.Only business contacts is significant after adjusting for age, race, etc.

23. 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 pre-post survey –Specific intervention

24. Research Summary 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%) Important HRQoL outcomesImportant HRQoL outcomes 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 study neededScientific study needed –Experimental design –Specific intervention across rehab phases

25. 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

26. 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 healthEvaluate satisfaction and physical and emotional health

27. Group Process Weekly 90-minute GroupWeekly 90-minute Group 4-5 Patients4-5 Patients Led by OT StaffLed by OT Staff Learning ModulesLearning Modules Open LabOpen Lab AssessmentAssessment

28. Patient Education Weekly CurriculumWeekly Curriculum –Anatomy of SCI and current research projects –Secondary medical conditions –Life management tasks –Sports, recreation, and leisure –Christopher Reeve Paralysis Resource Center and NSCIA website review

30. Life Management Skills Grocery ShoppingGrocery Shopping BankingBanking EducationEducation EmploymentEmployment CommunicationCommunication

31. Implementation EquipmentEquipment –Computers with Internet access, work stations, assistive technology, adaptive equipment StaffingStaffing –One OT with SCI experience and 1- 2 rehab aides or volunteers SchedulingScheduling

32. Adaptive Equipment and Assistive Technology

33. Occupational Therapy “Occupational therapy is skilled treatment that helps individuals achieve independence in all facets of their lives. Occupational therapy assists people in developing the “skills for the job of living” necessary for independent and satisfying lives.” The American Occupational Therapy Association

34. Contact Information Bethlyn Houlihan Senior Project Manager Room F511 (617) 638-7380 Bethlyn.Houlihan@bmc.org Claudine DeJoie, COTA/L Program Coordinator 617-638-7389 Claudine.DeJoie@BMC.org