Closing perception gaps between patients and their caregivers
10
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
-
Upload
inspire -
Category
Health & Medicine
-
view
703 -
download
0
description
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."
Transcript of Closing perception gaps between patients and their caregivers
Closing perception gaps between patients and their caregivers
Sept. 29, 2013
MEDICINE X
@brianloew Brian Loew @Helpkeepasister Maggie Heim
Paul Hoffman @Empoweringpts Aanand Naik, MD
@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
@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
@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
@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
@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 return to a relatively stable level of happiness despite major positive or negative events or life changes.”
Hedonic adaption
@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.
@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
