What Do Patients Really Want?-Eliciting preferences case study-
SICK OR TREAT SESSIONS, OCTOBER 2015
How do we elicit patient preferences ?
Discrete Choice Experiments
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Discrete Choice Experiments (DCEs) requires decision makers to select their preferred option from a set of competing
alternatives (which collectively form choice tasks)
Broadband Choice
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Respondents are shown multiple choice tasks, over which the features of the alternatives are
systematically varied, allowing for a determination of how each of the features impacts upon the
preferences of a sampled population.
Student Choice
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Art Gallery Choice
DCEs are now used by many fields to understand and model the trade-offs and preferences revealed
by the choices that people make.
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McFadden
DCE Origins – Long and established history
1931 2000
Thurstone
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High profile case - Apple vs Samsung
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Deliverables – Dashboards (examples)
Case Study:Chronic Lymphocytic Leukaemia (CLL)
Approx. 1,300 people diagnosed each year most common type of leukaemia generally a rare disease - 0.8% of all cancer mortality rate 375 / year
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Our approach
This research seeks to outline a methodological approach to elicit and quantify patient values in a
systematic way for the purpose of treatment evaluation
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Sampling
• Currently recruited 65 patients – 25% through Healthcare team (mainly specialists) – 75% through advertising
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Qualitative Research Findings – Overview
CLL: Patient Associations
CancerLeukaemiaShock (at diagnosis)
SeriousThreat
Malfunction
Tiredness Fatigue Lethargic
Stubborn Chronic Always in
the background
Uncertain; hidden / un-predictable
An ongoing struggle / challenge
Frustration
ResignationAccepting Philosophic
al
12 In-depth Interviews Mixture of face-to-face and phone
interviews Conducted by an experienced Qual
interviewer
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CLL Disease Burden: Emotional and Physical Impact
CLL symptoms*: tiredness / fatigue [particularly leading up to requiring treatment; when immune system is low; when patient has low oxygen levels – this can lead to patient having to cease physical activity and hobbies (e.g. exercise / sport); patients commonly require more sleep
Co-morbid conditions: including high temperature and pneumonia (attributed to a depleted immune system) – this can lead to hospitalisation for antibiotic treatment and monitoring (mentions of 3 days- 6 weeks hospital stay)
Side effects: with chemotherapy (particularly nausea) – a high dependence on caregiver during this time)
Inability / reduced capacity to work: can cause financial stress and can change family dynamics (i.e. wife has to work)
Physical Impact Frustration: due to CLL being a chronic
condition, currently no cure, prior therapy unsuccessful, impact on daily life (i.e. inability to participate in activities; e.g. play sport)
Concern / worry: CLL described as a ‘mental challenge’ (future is uncertain – reluctance to make plans; patients can never feel ‘free’); concerns about dying and impact of this on family, an unpredictable condition (can flare up unexpectedly)
Paranoia: patients are vulnerable to infections and are concerned about visiting places where they may be ‘at additional risk’ (e.g. hospitals; shops)
Disappointment: discouraging blood tests results (i.e. residual leukaemia cells)
Anxiety / nervousness: particularly when obtaining blood test results
Shock: initially, upon diagnosis Lack of motivation: a reduction in ‘drive’ -
more so when undergoing chemotherapy treatment
Emotional Impact
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CLL Disease Burden: Social and Financial Impact
Financial impact of CLL has been variable for patients
A few patients reported a low impact (due to financial security, part-time employment, Medicare, private health insurance)
A couple of patients reported a high financial burden due to:
Inability to work Attempting to find a cure
(experimenting with alternative medicine has been costly)
Substantial costs incurred by carer (based in rural location) when visiting patient in hospital (i.e. travel; accommodation, meals, laundry)
Financial Impact Unable / less able to socialise: too
unwell during periods of treatment (i.e. chemotherapy), tiredness / fatigue due to CLL
Some social withdrawal: one patient reported feeling defined by their CLL (change in personality - have become more subdued); preference for one to one vs. group situations (one report of feelings of alienation in larger social settings; preference for socialising only with family /and close friends)
Nutritional demands can affect type of socialising: e.g. avoid going to restaurants (preference for home cooked meals); very limited alcohol intake
Social Impact
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DCE scenario – Task information
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DCE scenario – Online Survey
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Results - Dashboard
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Dashboard – Treatment Index
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Dashboard – Treatment Index (changes)
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Dashboard – Treatment comparison
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Dashboard – Treatment comparison (changes)
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Dashboard – Relative Attribute Importance
Case Study: Quality of Life (QoL)
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http://qualityoflife.choicestudies.com/
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Dashboard – Treatment comparison
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Dashboard – Treatment comparison (changes)
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Dashboard – Relative Attribute Importance
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Dashboard – Individual QoL scores
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Dashboard – Individual QoL scores
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Dashboard – Individual QoL scores
Case Study: FDA Guidelines
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FDA Study – Weight Loss Device
Patient preferences considered for the first time in FDA decision to approve first-of-kind obesity device
N=540 United States adults with body mass index (BMI) e30 kg/m(2) evaluated trade-offs among effectiveness, safety, and other attributes of weight-loss devices in a
scientific survey.
DCEs were used to quantify the importance of safety, effectiveness, and other attributes of weight-loss
devices to obese respondents.
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FDA Study – Weight Loss Device
Developed a tool to estimate the minimum weight loss acceptable by a patient to receive a device with a given risk profile and the maximum mortality risk tolerable in
exchange for a given weight loss
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FDA Study – Benefits and Risk
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FDA Study – Patient Preference Guidelines
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FDA Study – Patient Preference Guidelines
• Encourage voluntary submission of patient preference information
• Recommended qualities of patient preference studies which may be valid scientific evidence
• Recommendations for collecting patient preference information
• Recommendations for including patient preference information in labelling for patients and health care professionals
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Patient Engagement – Treatment Lifecycle
Where to from here …..
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Where to from here …….
Patients I4C
Government
Healthcare Team
Industry
2016 Stakeholder Forum Incorporating patient preferences into health
technology assessment decision making
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Where to from here ……. Benefits
Patients I4C
Government
Healthcare Team
Industry
Individual feedback on preferences /
comparison to other patients
Patient preferences in
……
HTA decision making
Treatment decision making
Treatment alignment / research
development
2016 Stakeholder Forum Incorporating patient preferences into health
technology assessment decision making
Discussion
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