Everyday Evidence: Using Research And Stakeholder Input To Inform Use Of High-Tech Memory Aids

1. WS16 AOTA 84th Annual Conference & Expo Minneapolis, MN May 21, 2004 Everyday Evidence: Using Research And Stakeholder Input To Inform Use Of High-Tech Memory Aids Mary Vining Radomski, MA, OTR/L Susan Newman, OTR/L Matt White, OTR/L Elin Schold Davis, OTR/L, CDRS Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

2. Acknowledgement - Funding made possible through the generous contributions of donors to the Sister Kenny Foundation. Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

3. Goals of the session: • Describe a method of using best available evidence along with consumer and therapist perspectives to answer a clinical question • Share user impressions of PDAs as memory aids • Propose a learning schema aimed at compensation for memory problems Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

4. Overview of the session • Identify the research questions • Provide an overview of the existing literature • Describe our setting • Summarize the methods • Introduce the memory aids used in the study • BREAK ~ 10:50 • Impressions of focus groups • Proposed OT Process • Our take-aways Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

5. Evidence-based practice: “… the conscientious, explicit and judicious use of current best evidence for making decisions about the care of the individual patient. It means integrating individual clinical expertise with the best available external clinical evidence from systematic research.” Sackett, Richardson, Rosenberg, Haynes (1997) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

6. Best practice decisions based on: • Scientific evidence • Clinical expertise • Patient preference Lee & Miller (2003) Sackett, Richardson, Rosenberg, Haynes (1997) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

7. Context: Brain Injury Clinic Sister Kenny Rehabilitation Institute • 40 people each year who experience changes in memory, concentration, problem solving as a result of an acquired brain injury • Patients participate in occupational therapy to learn ways of compensating for often permanent cognitive changes. • They typically participate in 3 to 20 outpatient occupational therapy sessions during which they learn skills, habits, and routines that center on use of a day planner as a “cognitive prosthesis” Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

8. Context • Clients were asking about PDA’s • Various people (physicians, friends, family) were “recommending” PDA’s or “telling them their personal success stories – of using a PDA”. Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

9. Our overarching clinical concerns When is a high-tech memory aid appropriate for cognitively impaired clients? What type of device is best? Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

10. Scientific Evidence Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

11. Review of Literature • 2 approaches to addresses cognitive impairments – restoration of deficits vs. compensation for deficits • Compensation for deficits holds greatest promise for improving everyday functioning (Carney et al., 1999; Cicerone et al., 2000) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

12. Compensation for deficits occurs through routine use of an “external memory” system Low tech external memory systems – day planners, diaries High tech external memory systems – personal digital assistants (PDAs) electronic organizers electronic pagers Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

13. Compensation seems to work - evidence from small pre-post studies and single case studies Persons with ABI who used planners/diaries experienced fewer memory failures (Schmitter-Edgecombe et al., 1995) and improved ability to remember appointments and to dos (Zenicus et al., 1990 & 1991) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

14. Compensation seems to work - evidence from small pre-post studies and single case studies • So did persons using PDAs (Giles & Shore, 1989; Kim et al., 1999; Kim et al., 2000; Van Den Broek et al., 2000) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

15. Most patients use low-tech memory aids In a study of almost 100 people with brain injury related memory impairment, Evans and colleagues (2003) found that most subjects used calendars, wall charts, notebooks and only 7.4% used an electronic device as memory aid Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

16. Evans and colleagues suggested that electronic aids may be under-used because clinicians themselves do not have a good working knowledge of these devices. Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

17. Problem Many clients are motivated to use a pocket-computer memory aid (Wright et al., 2001), clinicians seem to lack confidence in their ability to guide clients in the use of these devices (Hart et al., 2003). Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

18. Evans and colleagues (2003) found that the following variables predicted use of memory aids: • Age – younger more likely to use • Time since injury – the longer since injury, less memory aid use • Number of aids used premorbidly – better if more premorbid use • Attention – measure of attention and speed of information processing proved to have strong relationship with use Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

19. Problem There is little guidance from the literature to help clinicians match client characteristics with memory aid features Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

20. Research Question: What compensatory memory tools are preferred by occupational therapists and potential users with acquired brain injury as means to remember appointments, assigned tasks, and time-specific actions based on a systematic analysis of features, learning time, demand characteristics (cognitive, physical, sensory) and user satisfaction? Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

21. Acquiring clinical expertise METHODS Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

22. In order to begin to match the right technology to specific patients’ needs and characteristics, we wanted to: 1) Acquaint ourselves with the types of devices currently available 2) Acquire personal expertise in their use 3) Obtain impressions of potential users 4) Come to some consensus regarding how/when to integrate this technology into traditional cognitive rehabilitation therapies. Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

23. Design • Descriptive study integrating qualitative and quantitative methods • Approved by hospital Institutional Review Board Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

24. 2 Sets of Participants - 4 occupational therapists • All serve outpatients at SKRI • 3 of 4 work exclusively in cognitive rehabilitation-adjustment program 16 persons with acquired brain injury recruited from local support groups Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

25. Inclusion Criteria • Ages 18 - 65 • No motor or communication impairments that precluded use of memory aids • Absence of learning disability or concurrent psychiatric illness • At least 6 months post onset of ABI • Evidence of mild to moderate memory problems (RBMT 10 – 21) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

26. Participants with ABI Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

27. Memory aids • 4 devices were identified for the study • As representative of • high tech vs low tech • simple and more complex. Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

28. Low Tech & Simpler • Week-at-a-glance Calendar www.daytimer.com IQ Voice Organizer http://www.vpti.com/ Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

29. Higher Tech & Specialized Software • HP Jornada • With PEAT Software • Visor • PDA • www.hp.com Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

30. Part 1: Therapists as usersProcedure for each device 1) Read manual and create cheat-sheet for how to input appointments, input to-dos, set alarms 2) Learn to perform 3 functions (defined as performance after a 15 minute interference task) 3) Use it for a 3-day trial 4) Complete adapted version of Quebec User Evaluation of Satisfaction with assistive Technology (QUEST) to capture immediate impressions (Demers et al., 1996) 5) Rate cognitive demands of device (LoPresti & Willkomm, 1997) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

31. QUEST example Instructions: For each of the 14 items, tell me the level of satisfaction you experienced with your memory tool during the 3-day trial by using the following 1 to 5 scale: • 1 = Not satisfied at all • 2 = Not very satisfied • 3 = More or less satisfied • 4 = Quite satisfied • 5 = Very satisfied Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

32. Examples from QUEST Satisfaction variables Degree of satisfaction USEFULNESS Degree to which the tool is practical and helpful in performing activities in various situations and environments 1 2 3 4 5 ADJUSTMENTS Degree of ease in setting and adjusting the components of the tool 1 2 3 4 5 TRAINING Degree of skill and experience required before being able to use the tool 1 2 3 4 5 Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

33. Degree of Cognitive Abilities Required (LoPresti & Willkomm, 1997) L = Low; M = Moderate – High; N = Not necessary; P = Necessary only for programming *item added for this project Ability to organize and plan Ability to problem solve Ability to learn and remember Ability to be attentive and concentrate Ability to see Ability to hear Ability to feel and touch buttons Ability to perform coordinated, fine motor activity* (list continued on next slide) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

34. Degree of Cognitive Abilities Required (LoPresti & Willkomm, 1997) L = Low; M = Moderate – High; N = Not necessary; P = Necessary only for programming *item added for this project Ability to comprehend orally Ability to visually read and comprehend Ability to process the speed of spoke language Ability to speak Ability to write Accuracy ability required Flexibility required Ability to self initiate Ability to input and respond at an appropriate speed Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

35. Part 1: Therapists as users • Therapists participated in a 2-hour self-lead focus group to discuss impressions • Discussion was audiotaped, transcribed, and analyzed by each therapist for themes. Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

36. Part Two: Persons with ABI as users • Volunteers were randomly assigned in blocks to 1 of 4 memory aids • Received 1 on 1 instruction to criteria • Participated in 3-day home trial • Completed QUEST via telephone within 1 day of 3-day trial • Participated in focus group (semi-structured) Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

37. Volunteers per Memory Aid • Week at a glance planner – 3 volunteers • IQ Voice Organizer – 4 • HP Jornada with PEAT software – 4 • Handspring Visor - 5 Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

38. Data sources • Log of learning time for both sets of participants • Log of therapist observations and reflections as learners and teachers • Responses to QUEST and cognitive requirements checklist (therapists only) • Focus group transcripts Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

39. Analyzing the data: • Attempted to analyze questionnaire data • Each therapist analyzed the focus group transcripts, individually and then as a group. • To organize the themes we • assigned codes for key themes • met as a group to discuss and establish consensus around key themes Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

40. Analyzing the data: • Based on this discussion, we identified/assigned key tasks: • 1) create a protocol that addresses key learning needs and sequence • 2) come up with “agreement to lend” policy and procedure • 3) create a features grid for tools • 4) create a plan for how we will maintain our knowledge of new tools. Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

41. RESULTS What We Learned Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

42. Acquiring Clinical Expertise and Defining Patient Preference Device Demonstration and Impressions Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

43. Week at a Glance Calendar • Features: • Inexpensive • No batteries • Need to self-initiate • Need legible penmanship Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

44. IQ Voice Organizer • Features • Clock • Alarm • Memo • Calendar • Contacts • Back up with PC Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

45. Visor Palm Pilot • Features: • Calendar • Notes • To Do List • Contacts • Information backed up on computer Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

46. Pocket PC with PEAT Software • Features: • Calendar • Notes • Contacts • To Do List • Information backed up on computer • Large Text • Multiple sounds for different alarms Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

47. Timex Data Link Watch • Features • Clock/Alarm • Contacts • Appointment/ Schedule • Countdown timers • Information backed up on the PC • Stop watch Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

48. Time Pad • Features: • Calendar • Voice alarm (message up to 72 seconds in length) • Clock Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

49. Invisible Clock • Features: • Calendar • Clock • Alarm (vibrating) • Worn like a pager • Stopwatch Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital

50. MotivAider • Features: • Vibrating alarm • User sets interval cycle • Simple to use • Can be worn like a pager Sister Kenny Rehabilitation Institute-Abbott Northwestern Hospital