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“What would you say to this patient?”
      Cancer Care Providers’
     Attitudes and Experiences

             Kathleen Mazor, EdD
            Thomas Gallagher, MD
     for the Adverse Event Project Team
Team
Sarah Greene, MPH      Douglas Roblin, PhD
Carolyn Prouty, DVM    Beth Lapham, BA
Brandi Robinson, MPH   Cassandra Firneno, BA
Celeste Lemay, MPH     Ben Dunlap, BA
Background
Effective patient-provider communication
critical in cancer care
Cancer care poses special challenges
- Communication about adverse events
  particularly difficult

Understanding providers’ views important
to developing interventions
Methods
Survey of cancer care providers
– PCPs, Oncologists, Oncology RNs
Three CRN sites
– Kaiser Permanente, Georgia
– Group Health Cooperative, WA
– Reliant Medical Group, MA

Tailored Design Method
–   Notification by email or letter
–   Incentive of gift card or chocolate
–   Follow-up with non responders
Methods
Questionnaires
– Two adverse event vignettes
     delayed diagnosis of breast cancer
     care breakdown resulting in delayed response to
    patient symptoms
– Attitudes and values related to communicating
  with cancer patients
Response Rates
759 questionnaires distributed
Overall response rate: 53%
– PCP response rate: 53% (333/630)
– Oncologist response rate: 44% (24/55)
– Oncology RN response rate: 64% (47/74)
Demographics
Gender
41% Male
Length of time in practice
13%   < 5 years
14%   5 to 10 years
73%   > 10 years
Percent time spent in clinical practice
79% > 80 percent
Delayed Diagnosis Vignette
PCP covering for colleague, seeing a 45 year-old
patient over several visits for management of HTN.
Patient mentions breast lump, which she had shown
to her regular PCP 6 months ago, seems larger.

 What would you say?
Colleague had noted breast lump issue 6 months
ago; had recommended re-exam, which did not
occur.
Covering PCP had not thoroughly reviewed chart, so
unaware of issue until the patient brings it up.
Biopsy shows cancer with 3 positive nodes.
What providers would VOLUNTEER
      about what happened…
19% would not give specific information about the
    event unless asked
36% “Breast cancer can be difficult to diagnose in
    younger women like you, whose breast have
    lots of lumps”
25% “…however, in you case an error happened
    that potentially delayed your diagnosis”
20% “…the fact that your doctor did not reexamine
     your breasts potentially delayed your
  diagnosis”
Other Responses
80% consider this a serious error
75% view covering PCP as at least partially
  responsible
96% view original PCP as at least partially
  responsible
96% view patient as at least partially
  responsible
75% would be “very” or “extremely” upset
  about the event
Delayed Response to Symptoms
PCP/oncologist following 65 y/o male with
history of hypothyroidism being treated for
colon cancer.
After 3rd call Oncologist tells nurse to
request callswork; patient passes to report
Patient lab nurse several times out while
driving to lab.
fatigue and diarrhea (both common with
his chemotherapy regimen)
In ER patient has hematocrit of 16 with
guaiactells patient to schedule a visit for
Nurse positive stool.
lab work if it gets worse and passes
information to PCP and Oncologist, each
assumes the other is handling.
What providers would say about
    the cause of the event...
27% would not volunteer a cause unless the
   patient asked.
35% “This occurred because of a
  miscommunication about how serious your
  symptoms were.”
38% “We should have followed up with you
  more promptly when you initially reported
  your symptoms to us”
Other Responses
58% consider this a serious error
90% view oncologist as at least partially
  responsible
87% view PCP as at least partially
  responsible
67% view RN as at least partially
  responsible
68% view patient as at least partially
  responsible
Providers find it very/extremely difficult
 responding to a cancer patient who:
Has unrealistic beliefs about prognosis        62%
Expresses concern about a delayed dx           55%
Expresses frustration about that provider’s
communication                                  39%
Suspects a medical error                       32%
Is unhappy about care from another clinician   5%
Is unhappy about communication w/ other
     another clinician
4%
Attitudes
69% believe their organization values good
    communication
95% believe they communicate effectively
71% believe they know when patients
  don’t understand
62% believe they know when patients have
    unaddressed concerns or unanswered
    questions
Communication Breakdowns

67% believed they are aware of most
  serious communication breakdowns
61% believe most patients are reluctant to
     voice concerns about serious
  breakdowns in their care
100% would want to know if a patient felt
     provider was not listening; not giving
     enough information
Alerting the System
98% agree organizations should
  encourage patients to alert system
  about serious breakdown in care
88% agree patient reports would provide
    actionable information
100% would want to know if a patient
  believe s/he had experienced a serious
     breakdown in care
Conclusions
Providers …
– are not always forthcoming following adverse
  events
– find some communication situations to be
  especially challenging
– aren’t always aware of patient-perceived
  breakdowns; concerns
– want to know about patient-perceived
  breakdowns, concerns
– support enhanced systems to solicit concerns
Next Steps
The “We Want to Know” campaign
– System-level support for “We want to know”
  about breakdowns and concerns
– Quick response
– Integrate patient reports of concerns and
  breakdowns in existing training mechanisms

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What Would you say to this Patient Cancer Care Providers Attitudes and Experiences GALLAGHER

  • 1. “What would you say to this patient?” Cancer Care Providers’ Attitudes and Experiences Kathleen Mazor, EdD Thomas Gallagher, MD for the Adverse Event Project Team
  • 2. Team Sarah Greene, MPH Douglas Roblin, PhD Carolyn Prouty, DVM Beth Lapham, BA Brandi Robinson, MPH Cassandra Firneno, BA Celeste Lemay, MPH Ben Dunlap, BA
  • 3. Background Effective patient-provider communication critical in cancer care Cancer care poses special challenges - Communication about adverse events particularly difficult Understanding providers’ views important to developing interventions
  • 4. Methods Survey of cancer care providers – PCPs, Oncologists, Oncology RNs Three CRN sites – Kaiser Permanente, Georgia – Group Health Cooperative, WA – Reliant Medical Group, MA Tailored Design Method – Notification by email or letter – Incentive of gift card or chocolate – Follow-up with non responders
  • 5. Methods Questionnaires – Two adverse event vignettes delayed diagnosis of breast cancer care breakdown resulting in delayed response to patient symptoms – Attitudes and values related to communicating with cancer patients
  • 6. Response Rates 759 questionnaires distributed Overall response rate: 53% – PCP response rate: 53% (333/630) – Oncologist response rate: 44% (24/55) – Oncology RN response rate: 64% (47/74)
  • 7. Demographics Gender 41% Male Length of time in practice 13% < 5 years 14% 5 to 10 years 73% > 10 years Percent time spent in clinical practice 79% > 80 percent
  • 8. Delayed Diagnosis Vignette PCP covering for colleague, seeing a 45 year-old patient over several visits for management of HTN. Patient mentions breast lump, which she had shown to her regular PCP 6 months ago, seems larger. What would you say? Colleague had noted breast lump issue 6 months ago; had recommended re-exam, which did not occur. Covering PCP had not thoroughly reviewed chart, so unaware of issue until the patient brings it up. Biopsy shows cancer with 3 positive nodes.
  • 9. What providers would VOLUNTEER about what happened… 19% would not give specific information about the event unless asked 36% “Breast cancer can be difficult to diagnose in younger women like you, whose breast have lots of lumps” 25% “…however, in you case an error happened that potentially delayed your diagnosis” 20% “…the fact that your doctor did not reexamine your breasts potentially delayed your diagnosis”
  • 10. Other Responses 80% consider this a serious error 75% view covering PCP as at least partially responsible 96% view original PCP as at least partially responsible 96% view patient as at least partially responsible 75% would be “very” or “extremely” upset about the event
  • 11. Delayed Response to Symptoms PCP/oncologist following 65 y/o male with history of hypothyroidism being treated for colon cancer. After 3rd call Oncologist tells nurse to request callswork; patient passes to report Patient lab nurse several times out while driving to lab. fatigue and diarrhea (both common with his chemotherapy regimen) In ER patient has hematocrit of 16 with guaiactells patient to schedule a visit for Nurse positive stool. lab work if it gets worse and passes information to PCP and Oncologist, each assumes the other is handling.
  • 12. What providers would say about the cause of the event... 27% would not volunteer a cause unless the patient asked. 35% “This occurred because of a miscommunication about how serious your symptoms were.” 38% “We should have followed up with you more promptly when you initially reported your symptoms to us”
  • 13. Other Responses 58% consider this a serious error 90% view oncologist as at least partially responsible 87% view PCP as at least partially responsible 67% view RN as at least partially responsible 68% view patient as at least partially responsible
  • 14. Providers find it very/extremely difficult responding to a cancer patient who: Has unrealistic beliefs about prognosis 62% Expresses concern about a delayed dx 55% Expresses frustration about that provider’s communication 39% Suspects a medical error 32% Is unhappy about care from another clinician 5% Is unhappy about communication w/ other another clinician 4%
  • 15. Attitudes 69% believe their organization values good communication 95% believe they communicate effectively 71% believe they know when patients don’t understand 62% believe they know when patients have unaddressed concerns or unanswered questions
  • 16. Communication Breakdowns 67% believed they are aware of most serious communication breakdowns 61% believe most patients are reluctant to voice concerns about serious breakdowns in their care 100% would want to know if a patient felt provider was not listening; not giving enough information
  • 17. Alerting the System 98% agree organizations should encourage patients to alert system about serious breakdown in care 88% agree patient reports would provide actionable information 100% would want to know if a patient believe s/he had experienced a serious breakdown in care
  • 18. Conclusions Providers … – are not always forthcoming following adverse events – find some communication situations to be especially challenging – aren’t always aware of patient-perceived breakdowns; concerns – want to know about patient-perceived breakdowns, concerns – support enhanced systems to solicit concerns
  • 19. Next Steps The “We Want to Know” campaign – System-level support for “We want to know” about breakdowns and concerns – Quick response – Integrate patient reports of concerns and breakdowns in existing training mechanisms