Shared DecisionMaking in Anticoagulation Patient Provider Family Friends

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Shared Decision-Making in Anticoagulation Patient, Provider, Family / Friends Annie Young University of Warwick

Shared Decision-Making in Anticoagulation Patient, Provider, Family / Friends Annie Young University of Warwick and University Hospitals Coventry and Warwickshire MASCC 2017, Washington 22 nd June 2017

CAT - what decision-making? ? VTE recurrence estimate the recurrence risk through lab tests

CAT - what decision-making? ? VTE recurrence estimate the recurrence risk through lab tests and sometimes imaging - only if the results of those tests would influence a patient’s treatment decision · duration · bleeding risks concurrent medication use · patient treatment preference · costs ·

How? Through Empowerment of Patient information Lack of Clinical Engagement Information overload… ‘Don’t want

How? Through Empowerment of Patient information Lack of Clinical Engagement Information overload… ‘Don’t want to overwhelm patients and detract from neutropenic sepsis’ Cancer patients have lots of access to hospital so unlikely to have undiagnosed VTE or delayed diagnosis

Clinicians: how can we improve? In UK, MDT Working – a good start In

Clinicians: how can we improve? In UK, MDT Working – a good start In our University Hospital in the UK, once weekly thrombosis MDT, followed by clinic - for all patients with thrombosis including CAT + other patients at risk of thrombosis - Oncologists refer to haematologists ad hoc · Shared Care Services with GPs (faxes!) · Occasional journal club meetings on CAT with oncologists – ‘CAT Pathway’ ·

Dependent on where we are in the (MASCC) world ‘ –NO’ shared decision-making -

Dependent on where we are in the (MASCC) world ‘ –NO’ shared decision-making - CAT · · Warfarin-based treatment remains the most common strategy globally for treatment of CAT 1; one anomaly of delivering ‘inferior’ treatment, is likely to be the cost differential Although LMWH is associated with a modest increase in life expectancy, this increase comes at significant cost 2 1. Lee AY et al, BMC Cancer, 2013. 13 (284) 2. Connell NT et al. Thromb Res 2017 150: 53 -58

First, listen to the patients – ‘PELICAN’ 20 patients receiving treatment for CAT were

First, listen to the patients – ‘PELICAN’ 20 patients receiving treatment for CAT were interviewed about their experiences of CAT within the context of the An investigator-initiated study that received funding from LEO Pharma cancer journey Noble S et al. Patient Prefer Adherence. 2015 Feb 24; 9: 337 -45

What does CAT mean to patients? · · · The CAT pathway was distressing,

What does CAT mean to patients? · · · The CAT pathway was distressing, with limited support or information, very different to cancer treatment and support Little ownership for CAT management Low awareness of CAT among patients and healthcare professionals. Patients started on anticoagulants were quickly discharged with limited explanation and/or support Noble S et al. Patient Prefer Adherence. 2015 Feb 24; 9: 337 -45

[…] having the cancer and then the thrombosis on top of it, , not

[…] having the cancer and then the thrombosis on top of it, , not knowing how bad it was when I went in, I know I was in terrific pain with my chest and that, it was frightening to be honest. [VCC 01]] Informed of diagnosis DISTRESSING EXPERIENCE RUSHED PROCESS LIMITED SUPPORT LIMITED INFORMATION Nobody really explained, […]So you don’t feel as though , you DIAGNOSIS know, I think if it was a little bit more relaxed , they probably AND would’ve got somebody you know, from a department to come and Initiation of treatment TREATMENT explain it more. [VCC 05] OF CAT SYMPTOMATIC RELIEF PRESCRIBING OF LMWH INJECTING OF LMWH ESTABLISH FOLLOW-UP Ongoing treatment […] it’s only when you start reading up about it, you sort of realize issues addressed just how serious , you know, sort of blood clots are […] I was very lucky that you know, it was a fatal, you know attack, so which is a little bit erm, scary. [VCC 05]]

Secondly, ensure Personalised Patient Information What to say? ‘Listening Moment’ - CAT Greater Risk

Secondly, ensure Personalised Patient Information What to say? ‘Listening Moment’ - CAT Greater Risk of Early Mortality 1 • Increased Morbidity e. g. superficial thrombophlebitis and increased hospitalisation • Increased risk of recurrent VTE • Bleeding complications • Cancer Treatment Delays • Increased Healthcare Costs 2 · Patient Quality of Life • 1. Chew HK et al. 2006 Arch Intern Med 166 (4): 458 -464 2. Elting LS et al. 2004 Arch Intern Med 164: 1653 -1661

Promote ‘Good’ Patient Information http: //www. anticoagulationeurope. org/cancer-blood-clots

Promote ‘Good’ Patient Information http: //www. anticoagulationeurope. org/cancer-blood-clots

Patient Treatment Preference? For long-term antithrombotic strategy, consider pharmacology, mechanism of action, evidence of

Patient Treatment Preference? For long-term antithrombotic strategy, consider pharmacology, mechanism of action, evidence of clinical benefits, and advantages and limitations · Treatment duration on LMWH was adequate. Patients expectations were high and treatment was perceived convenient with a high satisfaction 1 · DOAC example - edoxaban might be as effective as warfarin for the treatment of patients with cancer with venous thromboembolism, and with less clinically relevant bleeding 1. Cajfinger F et al. Thromb Res 2016; 144: 85 -92 2. Raskob GE et al. Lancet Haematol. 2016 3(8): e 379 -87

Which treatment? Trial schema DOACs 1? First randomisation 1. Levine ML et al. 2012

Which treatment? Trial schema DOACs 1? First randomisation 1. Levine ML et al. 2012 JTH 10: 807 -814

Duration Q? Trial schema Second randomisation

Duration Q? Trial schema Second randomisation

406 patients To keep up to date with select-d progress or to contact the

406 patients To keep up to date with select-d progress or to contact the team go to: http: //www 2. warwick. ac. uk/fac/med/research/ hscience/ctu/trials/cancer/select-d/ Analysis July 2017 - for ASH December 2017

Background to sub-study Patient experience and perception of CAT 1, 2 Acceptability of long-term

Background to sub-study Patient experience and perception of CAT 1, 2 Acceptability of long-term LMWH in patients with advanced malignancy 3 too difficult, invasive, or distressing for patients? · Even amongst patients with no prior experience of warfarin, daily injections were viewed as an acceptable trade-off against a serious, lifethreatening condition 3 · 21% of patients with cancer-associated VTE stopped LMWH injections because of side-effects 4 Mockler, A. , et al. Oncology Nursing Forum. 2012. 2. Noble S et al. Patient Prefer Adherence. 2015 24; 9: 337 -45 3. Seaman S et al Patient Preference & Adherence, 2014. 8 4. van der Wall SJ Thromb Haemost. 2017 15(1): 74 -79 1.

What do the patients say? Preferences for anticoagulation 100 CAT patients presented with 15

What do the patients say? Preferences for anticoagulation 100 CAT patients presented with 15 different scenarios to assess their preferences for drug · Patients valued safety and efficacy over route of administration (oral or injected), with ‘minimal interference with cancer treatment’ and ‘low rates of recurrence and risk of major bleeds’ as most important · Patients expressed a preference for oral anticoagulation - moderate importance · Further exploration of DOACs in CAT Noble, S. , et al. Haematologica, 2015. 100(11): 1486 -1492.

 Qualitative Sub-study · · · How do patients and carers experience CAT? What

Qualitative Sub-study · · · How do patients and carers experience CAT? What are their experiences of receiving rivaroxaban (a DOAC) or dalteparin (a LWMH)? How do they approach the risk-benefit balance of two different ways of anticoagulant administration? Hutchinson A, Rees S et al. ISTH poster abstract, July 2017

Results: In Context of Living with Cancer · · Misattribution of symptoms resulted in

Results: In Context of Living with Cancer · · Misattribution of symptoms resulted in delayed presentation to clinicians Some patients and carers were distressed when they were told it was life-threatening, Some described it as “a bit of a blow” on top of the cancer, and found it very worrying. Most common perception - just “part and parcel” of having cancer, and described feeling “laid back” or even “sanguine” about the VTE Hutchinson A, Rees S et al. ISTH poster abstract, July 2017

Results - Impact on Life Fear of VTE recurrence · · · “So I

Results - Impact on Life Fear of VTE recurrence · · · “So I will be conscious of a blood clot always now. ” “I don’t play mind games, I save me energy for the fight that I’ve got rather than one that might be down the road. ” “I was really scared because I’ve never seen anything like that and I honestly thought he was having a heart attack, he was in so much agony. . . So it frightens me to death that it could happen again. ” Hutchinson A, Rees S et al. ISTH poster abstract, July 2017

Results –DOAC Tablets vs Injections · “It was a bit of a relief to

Results –DOAC Tablets vs Injections · “It was a bit of a relief to be off the injections, and just putting the extra tablet in my little thing of tablets every day was easier. ” · “I suppose taking a tablet is less problematic. But again the injections didn’t worry me at all. ” · “I prefer the tablets but the injections didn't bother me. ” · “Well I’d probably choose the tablet if I could, but if I was in the same position as I usually am and I can’t swallow tablets I should have to go for the injection. ” Hutchinson A, Rees S et al. ISTH poster abstract, July 2017

Overall – sub-study Different to previous studies? · Most patients were able to take

Overall – sub-study Different to previous studies? · Most patients were able to take the experience of CAT in their stride; only a minority very worried · Patients generally found that injected LWMH was acceptable · The preference for oral administration was shown by many of our participants · Oral anticoagulants could provide a welcome choice for patients preferring tablets, if they are found to be as safe and effective as injected LWMH.

 Conclusion - ‘Jury’s still out’ Listen first –ensure information is out there, then

Conclusion - ‘Jury’s still out’ Listen first –ensure information is out there, then · Engaging in a shared decision-making effort is critical to best identify any patient preferences, to review the risks and benefits, and to determine the optimal agent for extended therapy 1 · ? impact shared decision making would have on a patient’s long-term adherence to anticoagulation · · - PERSONALISED CARE 1. Kneeland P and Fang M. Patient Preference and Adherence 2010: 4 51– 60

http: //www. anticoagulationeurope. org/cancer-blood-clots/a-cancerpatients-experience-of-suffering-a-blood-clot

http: //www. anticoagulationeurope. org/cancer-blood-clots/a-cancerpatients-experience-of-suffering-a-blood-clot