Kathleen Mazor, EdDKathleen Mazor, EdDThomas Gallagher, MD Thomas Gallagher, MD

for the Adverse Event Project Teamfor the Adverse Event Project Team

“What would you say to this patient?”

Cancer Care Providers’ Attitudes and Experiences

Team

Sarah Greene, MPHSarah Greene, MPH Douglas Roblin, PhDDouglas Roblin, PhD

Carolyn Prouty, DVMCarolyn Prouty, DVM Beth Lapham, BABeth Lapham, BA

Brandi Robinson, MPHBrandi Robinson, MPH Cassandra Firneno, Cassandra Firneno, BABA

Celeste Lemay, MPHCeleste Lemay, MPH Ben Dunlap, BABen Dunlap, BA

Background

Effective patient-provider communication Effective patient-provider communication critical in cancer carecritical in cancer care

Cancer care poses special challengesCancer care poses special challenges- Communication about adverse events - Communication about adverse events

particularly difficultparticularly difficult

Understanding providers’ views important Understanding providers’ views important to developing interventionsto developing interventions

MethodsMethodsSurvey of cancer care providersSurvey of cancer care providers– PCPs, Oncologists, Oncology RNsPCPs, Oncologists, Oncology RNs

Three CRN sitesThree CRN sites– Kaiser Permanente, GeorgiaKaiser Permanente, Georgia– Group Health Cooperative, WAGroup Health Cooperative, WA– Reliant Medical Group, MAReliant Medical Group, MA

Tailored Design MethodTailored Design Method– Notification by email or letterNotification by email or letter– Incentive of gift card or chocolateIncentive of gift card or chocolate– Follow-up with non respondersFollow-up with non responders

MethodsMethodsQuestionnairesQuestionnaires– Two adverse event vignettesTwo adverse event vignettes

delayed diagnosis of breast cancerdelayed diagnosis of breast cancer

care breakdown resulting in delayed response to care breakdown resulting in delayed response to patient symptomspatient symptoms

– Attitudes and values related to communicating Attitudes and values related to communicating with cancer patients with cancer patients

Response Rates759 questionnaires distributed759 questionnaires distributed

Overall response rate: 53%Overall response rate: 53%– PCP response rate: PCP response rate: 53% 53% (333/630)(333/630)– Oncologist response rate: Oncologist response rate: 44% 44% (24/55)(24/55)– Oncology RN response rate: 64% (47/74)Oncology RN response rate: 64% (47/74)

DemographicsGenderGender41% Male 41% Male

Length of time in practiceLength of time in practice13% < 5 years13% < 5 years

14% 5 to 10 years14% 5 to 10 years

73% > 10 years 73% > 10 years

Percent time spent in clinical practicePercent time spent in clinical practice79% > 80 percent79% > 80 percent

Delayed Diagnosis VignettePCP 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.

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 would you say?

What providers would VOLUNTEER about what happened…

19% would not give specific information about the 19% would not give specific information about the event unless askedevent unless asked

36% “Breast cancer can be difficult to diagnose in younger women like you, whose breast have like you, whose breast have lots of lumps”lots of lumps”

25% “…however, in you case an error happened 25% “…however, in you case an error happened that potentially delayed your diagnosis”that potentially delayed your diagnosis”

20% “…the fact that your doctor did not reexamine 20% “…the fact that your doctor did not reexamine your breasts potentially delayed your your breasts potentially delayed your

diagnosis”diagnosis”

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

Other Responses

Delayed Response to SymptomsPCP/oncologist following 65 y/o male with PCP/oncologist following 65 y/o male with history of hypothyroidism being treated for history of hypothyroidism being treated for colon cancer.colon cancer.

Patient calls nurse several times to report Patient calls nurse several times to report fatigue and diarrhea (both common with fatigue and diarrhea (both common with his chemotherapy regimen)his chemotherapy regimen)

Nurse tells patient to schedule a visit for Nurse tells patient to schedule a visit for lab work if it gets worse and passes lab work if it gets worse and passes information to PCP and Oncologist, each information to PCP and Oncologist, each assumes the other is handling.assumes the other is handling.

After 3rd call Oncologist tells nurse to After 3rd call Oncologist tells nurse to request lab work; patient passes out while request lab work; patient passes out while driving to lab.driving to lab.

In ER patient has hematocrit of 16 with In ER patient has hematocrit of 16 with guaiac positive stool. guaiac positive stool.

What providers would say about What providers would say about the cause of the event...the cause of the event...

27% would not volunteer a cause unless the 27% would not volunteer a cause unless the patient asked. patient asked.

35% “This occurred because of a 35% “This occurred because of a miscommunication about how serious miscommunication about how serious your your symptoms were.” symptoms were.”

38% “We should have followed up with you 38% “We should have followed up with you more promptly when you initially reported more promptly when you initially reported your symptoms to us” your symptoms to us”

Other Responses58% consider this a serious error58% consider this a serious error

90% view oncologist as at least partially 90% view oncologist as at least partially responsibleresponsible

87% view PCP as at least partially 87% view PCP as at least partially responsibleresponsible

67% view RN as at least partially 67% view RN as at least partially responsibleresponsible

68% view patient as at least partially 68% view patient as at least partially responsibleresponsible

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 69% believe their organization values good communicationcommunication

95% believe they communicate effectively 95% believe they communicate effectively

71% believe they know when patients 71% believe they know when patients don’t understand don’t understand

62% believe they know when patients have 62% believe they know when patients have unaddressed concerns or unaddressed concerns or

unanswered unanswered questionsquestions

Communication Breakdowns

67% believed they are aware of most 67% believed they are aware of most serious communication breakdownsserious communication breakdowns

61% believe most patients are reluctant to 61% believe most patients are reluctant to voice concerns about serious voice concerns about serious

breakdowns in their carebreakdowns in their care

100% would want to know if a patient felt 100% would want to know if a patient felt provider was not listening; not giving provider was not listening; not giving enough informationenough information

Alerting the SystemAlerting the System98% agree organizations should 98% agree organizations should

encourage patients to alert system encourage patients to alert system about about serious breakdown in careserious breakdown in care

88% agree patient reports would provide 88% agree patient reports would provide actionable informationactionable information

100% would want to know if a patient 100% would want to know if a patient believe s/he had experienced a serious believe s/he had experienced a serious breakdown in carebreakdown in care

ConclusionsConclusionsProviders …Providers …– are not always forthcoming following adverse are not always forthcoming following adverse

eventsevents– find some communication situations to be find some communication situations to be

especially challengingespecially challenging– aren’t always aware of patient-perceived aren’t always aware of patient-perceived

breakdowns; concernsbreakdowns; concerns– want to know want to know about patient-perceived about patient-perceived

breakdowns, concernsbreakdowns, concerns– support enhanced systems to solicit concernssupport 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