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

The Internet as a The Internet as a Treatment ModalityTreatment ModalityNew England Regional New England Regional

Spinal Cord Injury Center atSpinal Cord Injury Center at

Boston Medical CenterBoston Medical Center

ASIA-ISCoS MeetingASIA-ISCoS Meeting

Boston, MABoston, MA

June 27, 2006June 27, 2006

Learning ObjectivesLearning Objectives

1)1) Participants will be able to identify the Participants will be able to identify the evidence and rationale for use of the evidence and rationale for use of the Internet as a treatment modality in the Internet as a treatment modality in the rehabilitation of patients with SCI.rehabilitation of patients with SCI.

2)2) Participants will understand how to Participants will understand how to design and implement a weekly design and implement a weekly curriculum with patients with SCI in curriculum with patients with SCI in his/her rehabilitation setting.his/her rehabilitation setting.

Introduction: Why the Introduction: Why the Internet?Internet?

• The growing scope of The growing scope of independence for people with independence for people with disabilitiesdisabilities

• Internet access crucial to societal Internet access crucial to societal participation and functional participation and functional independenceindependence

• Experts highlighting Internet’s Experts highlighting Internet’s relevance to OTrelevance to OT

Research Review: Patient Research Review: Patient EducationEducation

• Nearly all with positive resultsNearly all with positive results• Critical review of acceptability and Critical review of acceptability and

usefulness of computerized interventions for usefulness of computerized interventions for pwd (Krishna et al, 1997)pwd (Krishna et al, 1997)– All diabetes: lowered blood glucoseAll diabetes: lowered blood glucose

• Inpatient breast cancer study w/ controls Inpatient breast cancer study w/ controls (N=162) (Lampe, 2004)(N=162) (Lampe, 2004)– Int grp: more home Internet use, helpedInt grp: more home Internet use, helped

• Independent skin care promotion for adults Independent skin care promotion for adults with paraplegia—across-subjects design with paraplegia—across-subjects design (Pellerito, 2003)(Pellerito, 2003)

Research Review: Psychosocial Research Review: Psychosocial Outcomes & Functional Outcomes & Functional IndependenceIndependence

• Small, randomized trial re: computer Small, randomized trial re: computer access & training w/ older adults for access & training w/ older adults for improved psychosocial outcomes (White improved psychosocial outcomes (White et al, 2002)et al, 2002)

• TBI computer knowledge training for TBI computer knowledge training for improved daily function--improved daily function--nonexperimental (Ivanoff, 2002)nonexperimental (Ivanoff, 2002)

• Case-control study of computer-assisted Case-control study of computer-assisted training improved wheelchair mobility training improved wheelchair mobility on obstacle course (Webster et al, 2001)on obstacle course (Webster et al, 2001)

Research on Relevant Research on Relevant Rehabilitation TopicsRehabilitation Topics

• Health information accessHealth information access• Vocational trainingVocational training• Social support and communicationSocial support and communication

NERSCIC Internet ProjectsNERSCIC 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*Copyright: Microsoft Corporation

Pilot MSN TV Study: Pilot MSN TV Study: QuestionsQuestions

1.1. How is quality of life [QoL] How is quality of life [QoL] affected by Internet use?affected by Internet use?

2. How do participants describe the 2. How do participants describe the effects of Internet access?effects of Internet access?

MSN TV Study DescriptionMSN TV Study Description

• Provided first-time Internet access Provided first-time Internet access to people with SCI at home (N=26)to people with SCI at home (N=26)

• MSN TV: like a cable box, with MSN TV: like a cable box, with television as monitortelevision as monitor

• Measured QoL at 3 and 6 monthsMeasured QoL at 3 and 6 months• Analyzed qualitative comments Analyzed qualitative comments

into domains by number and into domains by number and frequencyfrequency

MSN TV Study Results: MSN TV Study Results: Question 1Question 1

How is QoL affected by Internet use?How is QoL affected by Internet use?• TRENDS seen by each QoL component:TRENDS seen by each QoL component:

1.1. Global healthGlobal health: decline in physical health; : decline in physical health; improvement in mental healthimprovement in mental health

2.2. Social isolationSocial isolation: decrease in contact; : decrease in contact; increase in romantic/sexual relationshipsincrease in romantic/sexual relationships

3.3. Recreation: Recreation: Statistically significant Statistically significant decrease in solitary activities; increase in decrease in solitary activities; increase in social activitiessocial activities

MSN TV Study Results: Q. MSN TV Study Results: Q. 11

Table 3. Comparisons of baseline and follow - up interviews Health-Related Quality of Life Overall

(N=23) Baseline Follow - up Global Health % Fair or poor health 22% 26% Mean days in past 30 days physical health not good 1.7 (3.4) 5.7 (9.2) Mean days in past 30 days mental health not good 4.7 (8.2) 4.3 (7.7) Mean days sad, blue or depressed 6.8 (10.5) 5.4 (8.1) Mean days worried, tense or anxious 6.7 (9.1) 6.6 (9.6) Social Isolation Mean days in past 30 days poor physical or mental health kept person from doing usual activities

2.0 (3.8) 2.2 (4.5)

Mean number of friends and relatives contact per month 13.0 (11.5) 11.7 (9.5) % Involved in romantic relationship 33% 39% % During past 12 mo sexually active with another person 48% 52% Recreation Mean hours in recreation per week 18.8 (16.8) 15.2 (17.6) Solitary activities (watching television, listening to music, reading or writing)

74%* 48%

Social activities (board games, going out, socializing) 39% 44% *p<.05, for differences between baseline and exit using binomial test for proportions and paired T test for means


How do participants describe the effects of How do participants describe the effects of Internet access [benefits/risks]?Internet access [benefits/risks]?

• Has access to the Internet affected you Has access to the Internet affected you in any way?in any way?1.1. Yes, a lot Yes, a lot 3. No, not much3. No, not much

2.2. Yes, somewhatYes, somewhat 4. No, not at all4. No, not at all

For 1,2,or 3, how has it affected you? For 1,2,or 3, how has it affected you? • Grouped by theme and ranked by Grouped by theme and ranked by

frequencyfrequency


• Most important benefits of Most important benefits of Internet use (in order):Internet use (in order):

1.1. Improved Quality of LifeImproved Quality of Life

2.2. Ease of Access to InformationEase of Access to Information

3.3. Social ConnectionSocial Connection

4.4. Quality Information AvailableQuality Information Available


1. Improved Quality of Life1. Improved Quality of Life– ““It’s a wonderful pastime. It actually It’s a wonderful pastime. It actually

distracts my mind off some of my distracts my mind off some of my discomfort. I don’t want medication, I’d discomfort. I don’t want medication, I’d rather be distracted. I have spinal cord rather be distracted. I have spinal cord pain, [the Internet] gets myself out of pain, [the Internet] gets myself out of myself.”myself.”

– ““I have more to look forward to, it makes I have more to look forward to, it makes me happier. It’s something different, more me happier. It’s something different, more than just the same old grind. I’ve gotten than just the same old grind. I’ve gotten more interested in what’s going on.”more interested in what’s going on.”


2. Ease of Access to Information2. Ease of Access to Information– ““Anything that I’m interested in, I can look Anything that I’m interested in, I can look

up…I don’t get all stressed out. It’s not up…I don’t get all stressed out. It’s not easy for a quadriplegic to flip through the easy for a quadriplegic to flip through the Yellow Pages, so using the [Internet] is Yellow Pages, so using the [Internet] is easier.”easier.”

– ““Whenever I need something I’m not sure Whenever I need something I’m not sure of, it’s right there…It’s just opened up of, it’s right there…It’s just opened up doors…It’s opened my eyes…to things and doors…It’s opened my eyes…to things and places I couldn’t have seen before.”places I couldn’t have seen before.”


3. Social Connection3. Social Connection– ““Being able to connect with people, learn Being able to connect with people, learn

through people, make friends. The Web through people, make friends. The Web allows me to trust other people more without allows me to trust other people more without having to see them… Communication, having to see them… Communication, understanding people better. I share more understanding people better. I share more than through other forms [of than through other forms [of communication]. I share intimacy, share communication]. I share intimacy, share problems and losses…It helps unload problems and losses…It helps unload frustration. I’m frustrated with the scars on frustration. I’m frustrated with the scars on my face due to the accident.”my face due to the accident.”


4. Quality Information Available (health, 4. Quality Information Available (health, transportation, employment)transportation, employment)– ““The more I look, the more I find. The more The more I look, the more I find. The more

I find, the more I learn. The more I learn, I find, the more I learn. The more I learn, the “more better” my life becomes…I have the “more better” my life becomes…I have found many sites which send e-mail found many sites which send e-mail newsletter updates which I further review, newsletter updates which I further review, sort them out, and discard and select. Then sort them out, and discard and select. Then I put them to use.”I put them to use.”

Pilot MSN TV Study Pilot MSN TV Study LimitationsLimitations

• Measures not adequate to capture Measures not adequate to capture impact (ie. empowerment)impact (ie. empowerment)

• Small numbers—difficult to interpret Small numbers—difficult to interpret quantitative results beyond “trends”quantitative results beyond “trends”

• High drop-out rate: 10/33 withdrew; 6/10 High drop-out rate: 10/33 withdrew; 6/10 got computers for Internet access got computers for Internet access insteadinstead

• Equipment failureEquipment failure

National SCI Technology National SCI Technology SurveySurvey

• Follow up to Pilot MSN TV Study using Follow up to Pilot MSN TV Study using large national sample (N=520)large national sample (N=520)

• Cross-sectional survey re: Cross-sectional survey re: computer/Internet usecomputer/Internet use

• Analyzed relationship between Analyzed relationship between frequency of use and QoL (self-frequency of use and QoL (self-perceived health status, satisfaction perceived health status, satisfaction with life, emotional well-being, social with life, emotional well-being, social integration)integration)

Tech Survey Users vs. Tech Survey Users vs. NonusersNonusers

• Significant difference by age, race, Significant difference by age, race, education, employment status, education, employment status, incomeincome– Race Race

• Black=29%; Hispanic=32% vs. White=62%Black=29%; Hispanic=32% vs. White=62%

– Educational level Educational level • <8<8thth=9%; <H.S.=35%; H.S.=50%; =9%; <H.S.=35%; H.S.=50%;

Assoc/Bach=79%; Grad=89%Assoc/Bach=79%; Grad=89%

Technology Survey vs Technology Survey vs Pilot Results: Q. 1Pilot Results: Q. 1

MSN TV MSN TV • 10.6 hrs/wk for:10.6 hrs/wk for:

1.1. EmailEmail 86% 86%2.2. Web SurfingWeb Surfing 80% 80%

• Health Info 56%Health Info 56%• General Info 65%General Info 65%• Entertainment 64%Entertainment 64%

3.3. Chat RoomsChat Rooms 26% 26%4.4. ShoppingShopping 35% 35%5.5. Employment Info 5%Employment Info 5%

• 62.4% use at least 62.4% use at least monthly for:monthly for:1.1. EmailEmail 80% 80%2.2. Web SurfingWeb Surfing N/A N/A

• Health Info 35%Health Info 35%• Other 47%Other 47%• Entertainment 28%Entertainment 28%

3.3. Chat RoomsChat Rooms 9% 9%4.4. ShoppingShopping 32% 32%5.5. Employment Info 23%Employment Info 23%

How do people with SCI use the Internet?How do people with SCI use the Internet?

TechnologyTechnology

Technology Survey Technology Survey Results: Q. 2 vs PilotResults: Q. 2 vs Pilot

How is QoL affected How is QoL affected by Internet use?by Internet use?

• Significant correlation between Significant correlation between frequency of Internet use and:frequency of Internet use and:– Self-perceived health statusSelf-perceived health status– Satisfaction with lifeSatisfaction with life– Feeling down/depressed/hopelessFeeling down/depressed/hopeless– Contact with friendsContact with friends– Contact with businessesContact with businesses

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

Technology Survey Technology Survey Results: Other FindingsResults: Other Findings

• Internet used for communication, info, Internet used for communication, info, commercecommerce

• Fairly high access (65%) and use (62%)Fairly high access (65%) and use (62%)• Certain subgroups w/more access barriersCertain subgroups w/more access barriers

—need outreach—need outreach• Pain is an important modifierPain is an important modifier• Scientific study Scientific study

– Control group or pre-post surveyControl group or pre-post survey– Specific interventionSpecific intervention

Research SummaryResearch Summary

• Internet used for communication, info, Internet used for communication, info, commercecommerce

• Fairly high access (65%) and use (62%)Fairly high access (65%) and use (62%)• Important HRQoL outcomesImportant HRQoL outcomes• Certain subgroups w/ more access Certain subgroups w/ more access

barriers—need outreachbarriers—need outreach• Pain is an important modifierPain is an important modifier• Scientific study neededScientific study needed

– Experimental designExperimental design– Specific intervention across rehab phasesSpecific intervention across rehab phases

The SCI Guide: The SCI Guide: www.bu.edu/sciguidewww.bu.edu/sciguide

• Goal: to connect users with SCI to Goal: to connect users with SCI to quality peer-reviewed resources on the quality peer-reviewed resources on the Internet, esp. newly injured and Internet, esp. newly injured and technophobestechnophobes

• Consumers evaluate Internet resourcesConsumers evaluate Internet resources• Develop disability-specific rating system Develop disability-specific rating system

for websitesfor websites• Create a comprehensive, analytical Create a comprehensive, analytical

guide for the SCI community that is guide for the SCI community that is user-friendly and self perpetuatinguser-friendly and self perpetuating

Internet Access Group Internet Access Group ProjectProject

• Provide Internet training to newly Provide Internet training to newly injured patients with SCI during injured patients with SCI during initial acute rehabilitation stayinitial acute rehabilitation stay

• Provide free Internet access in Provide free Internet access in patient’s home post-dischargepatient’s home post-discharge

• Evaluate satisfaction and physical Evaluate satisfaction and physical and emotional healthand emotional health

Group ProcessGroup 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

Patient EducationPatient Education

• Weekly Curriculum Weekly Curriculum – Anatomy of SCI and current research Anatomy of SCI and current research

projectsprojects– Secondary medical conditions Secondary medical conditions – Life management tasksLife management tasks– Sports, recreation, and leisureSports, recreation, and leisure– Christopher Reeve Paralysis Resource Christopher Reeve Paralysis Resource

Center and NSCIA website reviewCenter and NSCIA website review

Life Management SkillsLife Management Skills

• Grocery ShoppingGrocery Shopping• BankingBanking• EducationEducation• EmploymentEmployment• CommunicationCommunication

ImplementationImplementation

• EquipmentEquipment– Computers with Internet access, work Computers with Internet access, work

stations, assistive technology, stations, assistive technology, adaptive equipmentadaptive equipment

• StaffingStaffing– One OT with SCI experience and 1-2 One OT with SCI experience and 1-2

rehab aides or volunteersrehab aides or volunteers

• SchedulingScheduling

Adaptive Equipment and Adaptive Equipment and Assistive TechnologyAssistive Technology

Occupational TherapyOccupational Therapy

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

The American Occupational Therapy AssociationThe American Occupational Therapy Association

Contact InformationContact Information

Bethlyn HoulihanBethlyn HoulihanSenior Project ManagerSenior Project ManagerRoom F511Room F511(617) 638-7380(617) [email protected]@bmc.org

Claudine DeJoie, COTA/LClaudine DeJoie, COTA/LProgram CoordinatorProgram Coordinator617-638-7389617-638-7389Claudine.DeJoie@[email protected]

Documents

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