Telehealth in Cancer Genetics

A/Prof Kathy Tucker, Clinical GeneticistRachel Williams, Senior Genetic CounsellorTina Gonzalez, Associate Genetic Counsellor

Prince of Wales Hereditary Cancer Centre

POWH Telemedicine/Telehealth team

What is Telemedicine?Telemedicine consultations involved a genetic clinician via video in addition to a local genetic counsellor present with the patient

Main drivers for starting Telemedicine (1999-2000)

• ACT genetic counsellor needed access for cancer genetics specialists for their patients

• Increasing specialisation - general geneticists no longer comfortable to see cancer patients

• Access for families already financially depleted (Cohn et al 2003 J Pediatric Hematology/Oncol)

• Cancer genetics part of standard cancer care• Cost of Telemedicine link up offset by reduction in staff and

patient travelling time and costs

Evidence base

Patient satisfaction (2005) • High satisfaction, even in geriatric patients!

Zilliacus (2010) – Conclusions• Clinicians perceived advantages outweighed the disadvantages.• Patients perceived advantages far outweighed the disadvantages

Telehealth comparison with F2F (Zilliacus) • 106 F seen by telemedicine and 89 F seen face-to-face completed

self-administered questionnaires before, and 1 month after, genetic consultation.

Zilliacus Results

• No significant differences between telemedicine and face-to-face GC in terms of:– knowledge gained (P = 0.55), – satisfaction with service (P = 0.76),– cancer-specific anxiety (P = 0.13),– generalized anxiety (P = 0.42), – depression (P = 0.96), – perceived empathy of the genetic clinician (P = 0.13), and – perceived empathy of the genetic counsellor (P = 0.12).

Results cont

• Telemedicine performed significantly better than face-to-face counselling in – meeting patients' expectations (P = 0.009) – promoting perceived personal control (P = 0.031).

CONCLUSION:– Telemedicine seems to be an acceptable and effective

method of delivering cancer geneticist services for hereditary breast and ovarian cancer to underserved areas.

Telemedicine from the Hereditary Cancer Centre

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2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019

ACT + WG Telemedicine

ACT WG POWH

W’gong started

From 1 patient to 3645!

Staff supervision via Telemedicine• Initially the ACT genetic counsellors travelled

to Sydney once a month for supervision• Next we did supervision by phone with the

relevant information sent up electronically• In 2017 started group video-supervision for

the ACT GCs with occasional ph/email F/U • In 2018, three genetic counsellors one

Goulburn, one Kingscliff and one in Singapore had formal supervision for accreditation

Hiccoughs• 1% request Face to face. • 1% needed face to face for clinical examination.

• About 1% are difficult consultations – possibly Telehealth may have played a part. – mut analysis positive result not prev seen by GC/ CG, – family dynamic where 3 generation, differing opinions– 25 yr old unaffected wanted Risk reducing mastectomy

RRM but no mutation in family (grief)– affected 35 wanted RRM but no mutation found so felt

disempowered ↔ grief

Genetic Counsellors KTTechnical glitches More patients More follow upTime and effort to develop co-counsellingLack of clear guidelines re facilitator roleIncreased workload

Increased work load, More pressureSeeing lots of new pts in quick succession Responsibility for increasing numbers of patients I am not seeingMore supervision timeTakes time/effort to develop co-counselling skills

Down sides

Counsellors KT

Specialised service available Patient satisfaction SupervisionAutonomyContinuity of care Higher Job satisfactionShorter waiting timesLearn co-counsellingLearn TelemedicineSupervision by telehealth decreased travel time

Effectively triagedLearnt new skillsDecreased waiting timeDon’t need to travel Direct Fellow supervisionCost saving likely –further research neededNow do supervision by telehealth

Positives of Telehealth

CONsultation via Telehealth to Access Cancer geneTic counselling (CONTACT)

study

What is Genetic Counselling?

• Education to patients and families• Support• Psychosocial support• Long term follow up• ‘Interpreter’ of complex medical information

Traditional Model

• Genetic counselling-in person or by telephone• Intake:

– Collect family history– Education– Explore pyschosocial– +/- Consent for testing

• Collect information eg histology• Discharge or Bring to clinic –co-counselling

with Dr

Patient Feedback

• Sitting in a waiting room with overtly sick people• Bring back sad/stressful memories for self or

when attending with loved one • Unresolved grief at their death • Fear of cancer – appt in a cancer centre• Parking• Time away from work• School hours (drop off, pick up)• Initial diagnosis-time impact of another appt

(TFGT)

Access

• Address feedback concerns• Multiple family members may attend• Remove barriers• Minimise delay for appts• Does not need to take up a clinic room (high

demand)• Fertile women-Babies• CALD community

Engagement

• Previous study – patients were less engaged with genetic counsellor when they didn’t see them (anecdotal)

• TCRN Consumer Forum - >60yo’s engagement with Telehealth?

• Enable GC better tool to assess psychological impact of discussion-read cues from pt

Genetic Counselling By Telehealth Not Measured

• Telehealth proven good acceptance by patients and clinicians involved in delivering genetic telemedicine from POWH to ACT (Zilliacus, 2011)

• Rural patients in Maine, USA have also reported Telehealth acceptability (McDonald, 2014) – big distances to hospital

CONTACT study

• Non-Inferiority study• Pt satisfaction• Acceptability• Psychological distress• Time measured

Pilot study objectives

1. Assess whether Telehealth consultations are acceptableand satisfactory for patients undergoing genetic counselling for cancer.

2. Assess the psychological impact of Telehealth compared to standard care.

3. Determine the costs of delivering Telehealth consultations versus standard care.

Hypotheses • Telehealth will be: - Satisfactory- Acceptable- No additional psychological distress- Cost-effective

Analysis plan• Descriptive statistics only for pilot (small numbers)

Study design

Telephone appointment

Telephone appointment standard care

n = 14

Telehealth appointment intervention

n = 13

In-person appointment

In-person appointment standard care

n = 14

Telehealth appointment intervention

n = 9

Triage

Randomisation

Randomisation‘Telehealth in-person stream’

‘Telehealth phone

stream’

Early data from pilot

• Psychological distress• Telehealth satisfaction • Patient feedback • Technical issues• Genetic Counsellor feedback

Psychological distress

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Pre-appointment Post-appointment

K10

scor

e

Time point

Average K10 psychological distress scores

Phone

Telehealth (phonestream)

In-person

Telehealth (in-person stream)

Telehealth satisfactionTelemedicine Satisfaction Questionnaire Item

‘Telehealth phonestream’ patients who ‘agree’ or ‘strongly agree’

Telehealth (in-person stream)patients who ‘agree’ or ‘strongly agree’

I can hear my health-care provider clearly 77% * 67%

I can see my health-care provider as if we met in person

92% 100%

I do not need assistance while using the system

54% * 89%

I obtain better access to health-care services by use of Telemedicine

62% 56%

Telemedicine saves me time travelling to hospital or a specialist clinic

85% 100%

Telemedicine provides for my health-care need

77% 78%

I will use Telemedicine services again 93% 100%

Telehealth satisfactionTelemedicine Satisfaction Questionnaire Item

‘Telehealth phonestream’ patients who ‘agree’ or ‘strongly agree’

‘Telehealth in-person stream’patients who ‘agree’ or ‘strongly agree’

I can hear my health-care provider clearly 77% 67%

I can see my health-care provider as if we met in person

92% 100%

I do not need assistance while using the system

54% * 89% *

I obtain better access to health-care services by use of Telemedicine

62% 56%

Telemedicine saves me time travelling to hospital or a specialist clinic

85% 100%

Telemedicine provides for my health-care need

77% 78%

I will use Telemedicine services again 93% 100%

Patient feedback

59% (17/29) patients liked the convenience of Telehealth

Being able to see the Genetic Counsellor (5/29)

More comfortable in the home environment (4/29)

“[Telehealth is] more personal. It’s easier to open up about

personal issues” – Telehealth phone stream

patient

“I didn’t have to go to the hospital in the rain, find parking, pay for parking. No exposure to sick people in the waiting

room”– Telehealth phone stream patient

“Could have appointment with cough/cold. Didn’t have

to cancel appointment!” – Telehealth in-person

stream patient

Technical issues

• Reported by 50% (11/22) of patients- Mostly sound/video issues- One patient lost connection- One patient unable to start PEXIP (firewall settings at work) - One patient didn’t understand what Telehealth apt was –

waiting for a phone appointment

• Technical issues unresolved for 2 patients.

Genetic Counsellor feedback

Positives ChallengesAble to ‘read’ patient reactionsand expressions

Optimising Telehealth set-up - Camera placement- Video/audio quality- Internet connection

Easier to explain genetic concepts (compared to phone call)

Preparing patients prior to appointment

Patients are reporting- High satisfaction - Reduced costs

‘Locking’ your virtual clinic room

Clinics running late

Implementation challenges

• Resources for patients

• Using Telehealth in a mixed modality clinic

• Technical support for patients and staff

• Admin support for booking and organising appointments

Practical Anecdotal Feedback

• Nostrils• Nose blow/picking• Image Angle - from laptop on floor/looking up

at pt sitting on floor– Ceiling/top of forehead

• Pt distraction of 2nd screen• Pt making cup of tea

Clinical anecdotes

• Takes longer to follow up pts requiring blood samples-consent return and collection

• Some pts have come to the hospital later in the same day for blood collection

• Some pts keen to have additional telehealthappts for results/follow-up

Next steps

Multi-site study commencing January 2020

• Process evaluation of study (Dr Natalie Taylor)

• Discrete Choice Experiment (Dr Richard De Abreu Lourenco)

• Cost-effectiveness analysis

• CALD patients and Interpreters