Closing perception gaps between
patients and their caregivers	

Sept. 29, 2013	

MEDICINE X	

@brianloew Brian Loe
@Helpke...
@brianloew	

 2	

Overall, caregivers noted symptoms to be at
higher rates than patients, while patients
were much more wi...
@brianloew	

 3	

Perceptions of stage IV NSCLC
patients and caregivers
Perception of symptom severity by Stage IV NSLC pa...
@brianloew	

 4	

Patient	

Caregiver	

Pain	

 Difficulty	

breathing	

Naus/Vom.	

0	

0.5	

1	

1.5	

2	

2.5	

3	

Perc...
@brianloew	

 5	

Patient	

Caregiver	

0	

10	

20	

30	

40	

50	

60	

Wt. Loss	

 Supp.Trial	

Report of weight loss &...
@brianloew	

 6
@brianloew	

 7	

www.helpkeepasisteralive.com
@brianloew	

 8	

The hedonic treadmill, also known as
hedonic adaptation, is the supposed
tendency of humans to quickly r...
@brianloew	

 9	

Mispredicting and Misremembering: Patients
With Renal Failure Overestimate Improvements
in Quality of Li...
@brianloew	

 10	

Key Findings	

• In addition to standard patient/physician interactions, patients and
companions were o...
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Closing perception gaps between patients and their caregivers

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This session at the Stanford University School of Medicine "Medicine X 2013" conference examined the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman, and from Aanand Naik, MD. Healthcare professionals need to be more attuned to the potential for a communications disconnect between a patient and his/her caregiver, which could lead to inadequate treatment. We discussed several studies, including a survey that Inspire conducted in 2012 in collaboration with Novartis, illustrating this gap: "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials."

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Closing perception gaps between patients and their caregivers

  1. 1. Closing perception gaps between patients and their caregivers Sept. 29, 2013 MEDICINE X @brianloew Brian Loe @Helpkeepasister Maggie Heim Paul Hoffman @Empoweringpts Aanand Naik, MD
  2. 2. @brianloew 2 Overall, caregivers noted symptoms to be at higher rates than patients, while patients were much more willing to participate in supportive care trials to evaluate novel methods to manage symptoms. Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials
  3. 3. @brianloew 3 Perceptions of stage IV NSCLC patients and caregivers Perception of symptom severity by Stage IV NSLC patients & their caregivers Patient Caregiver 0 0.5 1 1.5 2 2.5 3 3.5 4 Loss of strength Weakness Poor sleep Moodiness Fatigue
  4. 4. @brianloew 4 Patient Caregiver Pain Difficulty breathing Naus/Vom. 0 0.5 1 1.5 2 2.5 3 Perception of symptom severity by Stage IV NSLC patients & their caregivers Perceptions of stage IV NSCLC patients and caregivers
  5. 5. @brianloew 5 Patient Caregiver 0 10 20 30 40 50 60 Wt. Loss Supp.Trial Report of weight loss & willingness to participate in a supportive care trial to manage symptoms/feel better Perceptions of stage IV NSCLC patients and caregivers
  6. 6. @brianloew 6
  7. 7. @brianloew 7 www.helpkeepasisteralive.com
  8. 8. @brianloew 8 The hedonic treadmill, also known as hedonic adaptation, is the supposed tendency of humans to quickly return to a relatively stable level of happiness despite major positive or negative events or life changes. Hedonic adaption
  9. 9. @brianloew 9 Mispredicting and Misremembering: Patients With Renal Failure Overestimate Improvements in Quality of Life After a Kidney Transplant Health Psychology2008,Vol. 27, No. 5, 653–658 • Data show we have set-points in our quality of life and tend to adapt quickly as our health status changes but these adaptations are around our set-point.  •  Affective forecasting highlights human bias and errors in making emotional forecasts.
  10. 10. @brianloew 10 Key Findings • In addition to standard patient/physician interactions, patients and companions were often found to discuss medical information and to exchange opinions between themselves without the physician actively participating; we called these instances family time-out . • Physicians may benefit from observation of such instances of family time-out since these may contribute to consultation outcomes which are better understood and supported by the patient's social system. • This finding highlights the importance of companions being encouraged to attend consultations in which difficult decisions are made. Recognising the importance of family time-out in consultations: an exploratory qualitative study British Medical Journal Open2013; 3:e002144 doi: 10.1136

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