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Whole System Demonstrator Trial Evaluation 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

Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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Page 1: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Whole System Demonstrator Trial

Evaluation 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 SciencesCity University London

and Manchester University

Page 2: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

• Background to WSD

• Refusals to accept Technology

• WSD Qualitative Study of Participants and Carers

• Quantitative data of withdrawal from Telecare and Telehealth in WSD

• Acceptability and Withdrawal

STRUCTURE OF TALK

Page 3: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Background to WSD

Page 4: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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.

Page 5: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

WSD Evaluation Cluster RCT design

Social Care needs receive usual care

(CONTROL GROUP)

LTCs receive telehealth LTCs receive telehealth

Social Care needs receive telecare

LTCs receive usual care (CONTROL GROUP)

Social Care needs receive telecare

LTCs receive usual care(CONTROL GROUP)

Group A Group B Group C Group D

Social Care needs receive usual care

(CONTROL GROUP)

Page 6: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Cornwall Kent Newham0

200

400

600

800

1000

12001117

1057

775

1111

1010

760

Control InterventionControl2949

1

Intervention2881

0

Cornwall; 2228; 38%

Kent; 2067; 35%

Newham; 1535; 26%

Total Numbers recruitedTarget 5721 Recruited: 5831

Page 7: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

TeleHealth323055%

TeleCare260045%

TeleHealth TeleCare0

250

500

750

1000

1250

1500

1750

1625

1324

1605

1276

Control Intervention

Total Numbers recruited

Page 8: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Cornwall; 756; 27%

Kent; 1209; 44%

Newham; 801; 29%

Control1367

0

Intervention1399

1

Cornwall Kent Newham0

100

200

300

400

500

600

700

372

592

403384

617

398

Control Intervention

Questionnaire StudiesNumber of Participants

Page 9: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

COPD57837%

Diabetes45529%

HF54034%

COPD Diabetes HF0

50

100

150

200

250

300

350

400

244

209

275

334

246

265

Control Intervention

Questionnaire StudiesNumber of Participants

Page 10: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Refusals to accept Technology

Page 11: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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

Page 12: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Patient refusal as a limitation on recruitment Wakefield et al 2009

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

Page 13: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Singapore Telehealth - refusals

Seng et al 2007

Page 14: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Technical Failure as a potential limitation

Wakefield et al 2009 CHF –videophone 19% failure rate

Failure to install due to technical limitations in home

Page 15: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

WSDQualitative Study of Participants and Carers

Page 16: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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)

Page 17: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Old and new practices

ID168, W, 77 yrs, COPD

Page 18: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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

Page 19: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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,)

Page 20: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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)

Page 21: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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)

Page 22: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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)

Page 23: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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)

Page 24: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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)

Page 25: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Quantitative data of withdrawal from Telecare and Telehealth in WSD

Page 26: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Withdrawal from using telehealth&telecare?

Withdrawal reason TelecareN (%) TelehealthN (%)

Deceased 155 (5.85%) 164 (5.08%)Physical or mental illness 24 (0.92%) 50 (1.55%)Residential or nursing care 68 (2.62%) 13 (0.40%)No longer wishes to be in the control group 58 (2.23%) 69 (2.14%)No longer wishes to be in the intervention group and rejects the equipment after trying for a period 19 (0.73%) 211 (6.53%)

No longer wishes to share data 0 6 (0.19%)No longer wishes to participate as questionnaire is too onerous 7 (0.27%) 8 (0.25%)

Moved out of area to non-participating GP practice 19 (0.73%) 33 (1.02%)Absence from home or loss of contact 10 (0.38%) 12 (0.37%)Problem with equipment (e.g. equipment broken, no longer working, misused) 3 (0.12%) 11 (0.34%)

No reason given 8 (0.31%) 15 (0.46%)

Page 27: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Significant predictors of

withdrawal from Telecare

1. women less likely to withdraw

2. intervention participants less likely to withdraw

3. younger less likely to withdrawolder age categories increased the odds of withdrawal

4. Non-white British ethnic group less likely to withdraw

5. more co-morbid conditions greater chance of withdrawal

Page 28: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Effect B (S.E.) Wald Df Sig. Change in Odds

Lower CI

Upper CI

Completed trial(N/Mea

n)

Withdrew(N/Mean)

FemaleMale

-.369(.120) 9.497 1 .002 .691 .547 .874 1532696

228144

Intervention Control

-.409 (.117) 12.308 1 .001 .664 .528 .835 11261102

150222

Age 18-5975-7980-8485-8990+

.657 (.244)

.482 (.240)

.941 (.230)1.201 (.253)

7.2334.023

16.77122.558

71111

.007

.045

.001

.001

1.9301.6192.5643.325

1.1951.0111.6342.025

3.1162.5934.0235.458

347298417393194

3056649456

White BritishNon-white -.611 (.280) 4.748 2 .029 .543 .313 .940

1755230

32519

Number of co-morbidities

.106 (.038) 7.609 1 .006 1.111 1.031 1.198 1.03 1.30

Predictors of withdrawal from Telecare

Odds ratios for factors in relation to the odds of withdrawing

Negelkerke’s adjusted R2=.063

Page 29: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Significant predictors of withdrawal

from Telehealth

1. Participants in the intervention group more likely to withdraw

2. Older age categories increased the odds of withdrawal

3. Non-white British ethnic group less likely to withdraw

4. More co-morbid conditions greater chance of withdrawal

Page 30: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

EffectB (S.E.) Wald Df Sig. Change

in OddsLower

CIUpper

CI

Completed trial(N/Me

an)

Withdrew(N/Mean)

Intervention Control

.721 (.097) 55.638 1 .000 2.057 1.702 2.487 1230 1406

375 219

Age 18-5970-7475-7980-8485-8990+

.037 (.176)

.342 (.175)

.715 (.180)

.831 (.216)

.0453.807

15.84614.854

7111

.832

.051

.000

.000

1.0381.4082.0442.295

.736

.9981.4381.504

1.4651.9842.9073.502

478 477 434 310 144 37

83 86

105 110 55 17

White BritishNon-white

-.265 (.173)

2.348 1 .125 .767 .546 1.0772018 310

497 57

Number of co-morbidities

.062 (.031) 4.111 1 .043 1.064 1.002 1.130

1.70 2.07

Deprivation deciles – lowest thru to highest

.074 (.150)

.231 (.151)

.019 (.161)

.747 (.154)

.2412.326

.01323.471

5111

.623

.127

.909

.000

1.0771.2591.0192.110

.802

.936

.7431.560

1.4461.6931.3972.855

543542501563476

12311111493

152

Predictors of withdrawal from TH:Odds ratios for factors in relation to

the odds of withdrawing

Negelkerke’s adjusted R2=.081

Page 31: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

TeleHealth157357%

TeleCare119343%

TeleHealth TeleCare0

200

400

600

800

1000

728

639

845

554

Control Intervention

Questionnaire StudiesNumber of Participants

Page 32: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Why withdraw from using telehealth&telecare?

Withdrawal reason TelecareN (%) TelehealthN (%)

Deceased 155 (5.85%) 164 (5.08%)Physical or mental illness 24 (0.92%) 50 (1.55%)Residential or nursing care 68 (2.62%) 13 (0.40%)No longer wishes to be in the control group 58 (2.23%) 69 (2.14%)No longer wishes to be in the intervention group and rejects the equipment after trying for a period 19 (0.73%) 211 (6.53%)

No longer wishes to share data 0 6 (0.19%)No longer wishes to participate as questionnaire is too onerous 7 (0.27%) 8 (0.25%)

Moved out of area to non-participating GP practice 19 (0.73%) 33 (1.02%)Absence from home or loss of contact 10 (0.38%) 12 (0.37%)Problem with equipment (e.g. equipment broken, no longer working, misused) 3 (0.12%) 11 (0.34%)

No reason given 8 (0.31%) 15 (0.46%)

Page 33: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Predictors of Rejecting the kit:

1. TH more likely to reject equipment

2. More TH kit predicts rejection of kit

3. Less TC kit predicts rejection of kit

Page 34: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Effect B (S.E.) Wald Df Sig. Change in Odds

Lower CI

Upper CI

Completed

trial(N/Mean)

Rejected Kit

(N/Mean)

Telehealth 2.314 (.243) 90.636 1 0.01 10.118 6.283 16.294 1230 210

Telecare 1126 19

Amount of TH Kit

0.722 (0.064) 126.881 1 <0.001 2.058 1.815 2.333 1.38 2.63

Amount of TC Kit

-0.616 (0.074) 70.153 1 <0.001 0.540 0.467 0.624 1.73 0.30

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

Page 35: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Acceptability and Withdrawal

Page 36: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

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:

1. “quality” referring to the degree to which the services increases the chances of desired health outcomes

2. “access” referring to patients receiving the right care at the right time

3. “cost” referring to the economical value of resource use associated with the accomplishment of the defined objectives

4. “acceptability” as defined above.

Page 37: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

WSD QuestionnairesCognitive measures

SCB-SES Self-care Behaviours Self Efficacy Scale - examines individuals confidence in performing self-care behaviours

Generalised SES Generalised Self Efficacy Scale - assesses optimistic self-beliefs to cope with a variety of difficult demands in life

SUTAQ Service User Technology Acceptability Questionnaire –technology users beliefs and perceptions of the equipment (e.g. impact of kit on communication, concerns with confidentiality, anxiety using kit)

Illness Strain Index

Measure of strain related to having a chronic illness – (revision of CGSI for cared for individual)

Impact of Illness Scale

Measures the degree that illness/problems interferes with key roles and responsibilities in daily living

Subjective Norms

Measures the individual’s estimate of the social pressure to perform or not perform the target behaviour

Page 38: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Sample Characteristics

copd - 215 diabetes- 95heart failure-

168

cornwall - 169 kent -218 newham - 91

mean age = 70.92 years (9.93)

pulse oximeter glucometer weight scales

mean experience with kit = 126 days (23.9)

average items of kit = 2.71 (0.61)

478 TH participants receiving telehealth kit for minimum 90 days- WSD

female - 182 male - 296

Page 39: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Sub-Scale Scores

Enhanced CareIncreased Accessibility

Privacy & Discomfort

Care Personnel Concerns

Kit as substitution Satisfaction

mean=4.80, SD=1.03 mean=4.13, SD=1.33 mean=1.94, SD=1.01

mean=2.43 SD =1.17 mean=3.35 SD =1.21 mean= 5.29 SD =0.93

Page 40: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

enhanced care increased ac-cessibility

privacy/discom-fort

care personnel concerns

kit as substitu-tion

satisfaction

COPD 1.35767441860465

0.663953488372093

-1.667441860465

12

-1.154263565891

47

-0.065891472868

217

1.86744186046512

Diabetes 1.24315789473684

0.881578947368421

-1.35 -1.001754385964

91

-0.387719298245

614

1.63684210526316

Heart Fail-ure

1.25238095238095

0.449404761904763

-1.534226190476

19

-1.003968253968

25

-0.115079365079

365

1.76587301587302

-2.8

-2.3

-1.8

-1.3

-0.8

-0.3

0.3

0.8

1.3

1.8

2.3

* p < 0.05

* p < 0.05

strongly agree

strongly disagree

mildly agree

moderately disagree

moderately agree

mildly disagree

6

1

4

2

5

3

4.858 4.164a,b 1.833a 2.346 3.434 5.3674.743 4.382a 2.150b 2.498 3.112 5.1374.752 3.949b 1.966a,b 2.496 3.385 5.266

Sub-Scale differences by long term condition

Page 41: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

enhanced care increased accessi-bility

privacy/discomfort care personnel concerns

kit as substitution satisfaction

Completed 1.3719806763285 0.719202898550725

-1.6231884057971

-1.1103059581320

5

-0.0925925925925

927

1.85990338164251

Rejected Kit 0.24 -0.5833333333333

33

-0.7333333333333

34

-0.6888888888888

89

-0.9555555555555

56

0.911111111111111

-2.8

-2.3

-1.8

-1.3

-0.8

-0.3

0.3

0.8

1.3

1.8

2.3

** p < 0.001

p > 0.05 ** p < 0.001

** p < 0.001

** p < 0.001

** p < 0.001

strongly agree

strongly disagree

mildly agree

moderately disagree

moderately agree

mildly disagree

6

1

4

2

5

3

Predictive validity of acceptability: SUTAQ sub-scale differences in rejecters of kit

and completers

4.872 4.219 1.877 2.390 3.407 5.3603.740 2.917 2.767 2.811 2.544 4.411

Page 42: Whole System Demonstrator Trial Evaluation of Telehealth&Telecare: who accepts and rejects the equipment and why Stanton P Newman, Lorna Rixon, Shashivadan

Thank you

[email protected]