Stanton P Newman,

1. Whole System Demonstrator TrialEvaluation of Telehealth&Telecare:who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan P Hirani Martin Cartwright, Michelle Beynon, Luis Silva, AbiSelva, Caroline Sanders School of Health Sciences City University London and Manchester University

2. Background to WSD STRUCTURE OF TALK • Refusals to accept Technology • WSD Qualitative Study of Participants and Carers • Quantitative data of withdrawal from Telecare and • Telehealth in WSD • Acceptability and Withdrawal

3. Background to WSD

4. Overall Aim of WSD Evaluation Aim: to provide a comprehensive evaluation of the addition of telecare and telehealth to whole systems re-design. Project planned to assess up to 6,000 individuals and up to 660 carers with a variety of methods and levels of analysis.

5. WSD Evaluation Cluster RCT design Group A Group B Group C Group D Social Care needs receive usual care (CONTROL GROUP) Social Care needs receive telecare Social Care needs receive telecare Social Care needs receive usual care (CONTROL GROUP) LTCs receive telehealth LTCs receive usual care (CONTROL GROUP) LTCs receive usual care (CONTROL GROUP) LTCs receive telehealth

6. Total Numbers recruited Target 5721 Recruited: 5831

7. Total Numbers recruited

8. Questionnaire Studies Number of Participants

9. Questionnaire Studies Number of Participants

10. Refusals to accept Technology

11. Problems with recruitment • “Our assumption that all those who were eligible would want the technology proved to be the biggest challenge in the recruitment process.” (Martin Scarfe, Project Director Newham) http://www.wsdactionnetwork.org.uk/news/from_the_dh_pilots_update/december_2009_wsd.html

12. Wakefield et al 2009 CHF - 35% refusal Possible Reasons for Refusal Concern that will lose face to face service Invasion of Privacy Complexity of Equipment Suspicion of Equipment Patient refusal as a limitation on recruitment Wakefield et al 2009

13. Singapore Telehealth - refusals Seng et al 2007

14. Wakefield et al 2009 CHF –videophone 19% failure rate Failure to install due to technical limitations in home Technical Failure as a potential limitation

15. WSDQualitative Study of Participants and Carers

16. Aim and Methods • Aim: • to explore participant engagement with interventions • Methods: • Qualitative interviews (longitudinal for 58 trial participants, single time point for 19 declining) • Observation (shadowing staff visits, observing kit in use at home and monitoring centres)

17. Old and new practices ID168, W, 77 yrs, COPD

18. Key qualitative themes from those not wanting to trial the equipment • Perceptions of health, self-care and dependency • Views on technology and operational factors • Expectations and experiences of changes in service provision and use

19. Non-participants: Threats to health, self-care and independence • “I'd feel more crippled… As long as I can get out, that's all I am worried about…sometimes we're out shopping and might see these elderly people - we're old; eighty four years old. We see these old people... hobbling along, like, you know, and we're walking..” (ID28, M, 84 yrs, HF,)

20. Non-participants: Threats to health, self-care and independence • “I think you feel like you're not in control of your life… from how he explained it, you tended to have to do your blood test every single day… I try to be a bit more relaxed and… I just felt it, it did put a bit more pressure on me…” (ID31, W, 61 yrs, Diab)

21. Non-participants: Perceptions of technology • “I stood at my front door the other day and I thought, 'really, truly, this world's not for me now, it's too complicated,' … you don't speak to anybody, you get buttons you push and press. I've got a mobile phone but I wouldn’t even know how to use it.” (ID27, W, 79, diab)

22. Non-participants: Perceptions of technology • “The older you get the more forgetful you get, it's sometimes difficult to manage that sort of machinery … younger people obviously are computer wise… when you are not used to it you need to read the manual every time.” (Wife of ID33 M, 66yrs, COPD)

23. Non-participants: expectations and experiences of services • “They put things in your home don't they. You don't have to go to the doctors…Too complicated for me…I like things plain and simple. I'd sooner go over to the doctor.” (ID27, W, 79 yrs, diab)

24. Non-participants: expectations and experiences of services • “…we have such good contact with our district nurses and our supporting teams around us. I mean, I've only got to phone the hospice and somebody will come out…we've got so many contacts around us.” (wife of ID134, M, 70 yrs, COPD)

25. Quantitative data of withdrawal from Telecare and Telehealth in WSD

26. Withdrawal from using telehealth&telecare?

27. Significant predictors of withdrawal from Telecare women less likely to withdraw intervention participants less likely to withdraw younger less likely to withdraw older age categories increased the odds of withdrawal Non-white British ethnic group less likely to withdraw more co-morbid conditions greater chance of withdrawal

28. Predictors of withdrawal from Telecare Odds ratios for factors in relation to the odds of withdrawing Negelkerke’s adjusted R2=.063

29. Significant predictors of withdrawal from Telehealth Participants in the intervention group more likely to withdraw Older age categories increased the odds of withdrawal Non-white British ethnic group less likely to withdraw More co-morbid conditions greater chance of withdrawal

30. Predictors of withdrawal from TH: Odds ratios for factors in relation to the odds of withdrawing Negelkerke’s adjusted R2=.081

31. Questionnaire Studies Number of Participants

32. Why withdraw from using telehealth&telecare?

33. Predictors of Rejecting the kit: TH more likely to reject equipment More TH kit predicts rejection of kit Less TC kit predicts rejection of kit

34. Predictors of Rejecting the kit: Odds ratios for factors in relation to the odds of rejecting the equipment

35. Acceptability and Withdrawal

36. Rationale for Studying Acceptability • According to the US Institute of Medicine Guidelines for the Assessment of Telemedicine (Field et al, 1996) “acceptability” is essentially the degree to which patients are clinicians are satisfied with a service or willing to use it. • They further assert that: In the evaluation of any Telemedicine Project the following areas must be assessed: • “quality” referring to the degree to which the services increases the chances of desired health outcomes • “access” referring to patients receiving the right care at the right time • “cost” referring to the economical value of resource use associated with the accomplishment of the defined objectives • “acceptability” as defined above.

37. WSD Questionnaires

38. Sample Characteristics 478 TH participants receiving telehealth kit for minimum 90 days- WSD copd - 215 diabetes- 95 heart failure- 168 pulse oximeter glucometer weight scales female - 182 male - 296 cornwall - 169 kent -218 newham - 91 mean age = 70.92 years (9.93) mean experience with kit = 126 days (23.9) average items of kit = 2.71 (0.61)

39. Sub-Scale Scores Increased Accessibility Privacy & Discomfort Enhanced Care mean=1.94, SD=1.01 mean=4.80, SD=1.03 mean=4.13, SD=1.33 Kit as substitution Satisfaction Care Personnel Concerns mean=2.43 SD =1.17 mean=3.35 SD =1.21 mean= 5.29 SD =0.93

40. Sub-Scale differences by long term condition strongly agree 6 moderately agree 5 mildly agree 4 mildly disagree 3 moderately disagree 2 strongly disagree 1

41. Predictive validity of acceptability: SUTAQ sub-scale differences in rejecters of kit and completers 6 strongly agree 5 moderately agree 4 mildly agree 3 mildly disagree 2 moderately disagree 1 strongly disagree

42. Thank you Stanton.Newman.1@city.ac.uk