Disparities in Perceptionsof MDS Understanding

Between Patients and Nurses:AA&MDSIF 2014 Survey Results

Joan M. Latsko, DNP, FNP-BC, OCN, AOCNP

Pittsburgh, Pennsylvania

AA&MDSIF Survey Goals

• Compare physician, nurse and patient responses to identify misperceptions and disparity

• Explore the impact of ageism and comorbidities on access to treatments, including supportive care

• Explore reasons for treatment discontinuation for specific treatments

• Expand the inquiry into patient education and services to include format, timing and benefit

• Examine the impact that the AA&MDSIF Treating MDS Toolkit has on patient education

• Gather additional information on factors that impact treatment adherence

Methodology

• Surveys:• Developed and field tested with patient,

physician and nursing panels• Adjustments made based on feedback and

from the AA&MDSIF • Approved by medical advisors• Submitted and approved by the IRB• Consent included in the email with link to

survey

Methodology

• Links to online surveys sent to patients, physicians and nurses within the AA&MDSIF database:

• Patient Survey:- Emailed to 4,129 patients- Patient analysis based on 314 complete responses

• Physician and Nurse Survey:− Emailed to 4,594 healthcare providers− Physician analysis based on 51 complete

responses− Nurse analysis based on 165 complete responses

MDS Patient Demographics

AGE

18-20 21-49

50-59 60-64

65-69 70-74

Over 75

MDS Patient Diagnosis

0 0 1 1 2 1 1 1 24

1 2 3 2 2 2

11

5 6

15

86

21

27

20

25

3835

38

26

8

MDS Patient Classification

MDS Category

Low RiskHigh RiskLow-High Risk ConversionAML ConversionUnsure

MDS Patient Co-Morbidities

CONDITION PERCENTAGENo other medical problems 22%Heart disease or heart surgery or hypertension 37%Kidney disease 9%Lung disease (asthma, emphysema, etc.) 14%Liver abnormalities 9%Stroke or problems with blood vessels 6%Blood clots 7%Autoimmune disorders (Lupus, rheumatoid arthritis, psoriasis) 12%

Endocrine disorders (diabetes, thyroid disease) 27%Other cancers 16%Mental health problem (depression, anxiety, etc.) 23%Other blood disorders 5%Other 17%

Myelodysplastic Syndromes

Myelodysplastic Syndromes (MDS) are a complex, diverse and incurable collection of myeloid malignancies characterized by

progressive bone marrow failure, cytopenias and increased risk of acute myeloid leukemia (AML) transformation

MDS Description

Cance

r

Pre-Leuke

mia

Blood Disord

er

Heme Mali

gnan

cy

Low Blood Counts

Anemia

Neutropenia

Thrombocy

topenia

Bone Marr

ow Failu

re0

102030405060708090

MDs NURSEs PATIENTs

MDS Educational Providers

MD Nurse Shared - MD & Nurse

Other0

10

20

30

40

50

60

70

MDs NURSEs PATIENTs

MDS Educational Format

Printed M

DS - O

ffice

Printed M

DS - O

rganiza

tions

Conversa

tions with

MD

Conversa

tion with

Nurse

Patient E

ducato

r/Nurse

Nav

Internet-B

ased

Patients

Conferences

Other

0

20

40

60

80

100

MDsNURSEsPATIENTS

MDS Web-Based Sites

• Aplastic Anemia & MDS International Foundation (www.AAMDS.org)

• Be the Match (www.marrow.org)• Clinical Trials (www.clinicaltrials.gov)• Leukemia and Lymphoma Society (www.lls.org)• MDS Beacon (www.mdsbeacon.com)• MDS Foundation (www.mds-foundation.org)• National Institutes of Health (www.nlm.nih.gov)• National Cancer Institute (www.cancer.gov)• National Comprehensive Cancer Network (www.nccn.com)• Web MD (www.webmd.com)

MDS Educational Timing

Diagnosti

c Worku

p

Time of D

iagnosis

Follo

w-up Appt

Treatment A

ppt

Referral to

MDS T

reatment C

enter

MDS T

reatment C

enter

Treatment In

itiation

Treatment C

ompleteion

Treatment C

hange

Disease

Progre

ssion

0

20

40

60

80

MDsNURSEsPATIENTs

MDS Adverse Event Education

PATIENTs

No InstructionsVerbal MDVerbal NurseWritten MDWritten NurseOther

MDS Adverse Event Reporting

PATIENTs

No Adverse EventsCalled NurseCalled MDDid Not ReportNext ApptTreated Self-OTC Meds

Survey Conclusions

• Patients:– Limited ongoing access to services after

initial diagnosis • Physician and Nurses:

– Ageism continues to manifest in lack of willingness or commitment to a course of treatment for much older patients

– Lack of understanding persists on how to effectively treat MDS in the context of comorbidities

– Disconnect regarding the impact of treatment on quality of life

Survey Conclusions

• Physicians and Nurses:– Disconnect in communication:

• Reasons for treatment discontinuation:–Disease progression vs treatment

ineffective• Experiences/reporting of side effects

– Lack of MDS education continues to be an issue for community health care providers

– Lack of ongoing and repetitive education about the MDS disease, treatment and adverse events, particularly in disease progression

Additional Survey ResultsPresented at ONS Congress• Use of the AA&MDSIF “Treating MDS Toolkit”

by Oncology Nurses Can Enhance MDS Disease State and Treatment Related Adverse Event Education (Poster Presentation)

• Available from the Aplastic Anemia & MDS International Foundation (AA&MDSIF) at www.AAMDS.org

Myelodysplastic Syndromes (MDS)“Enhancing the Nurses Role in

Management”

Christa Roe, RN, BS, OCN

Malignant Hematology Department

H Lee Moffitt Cancer Center & Research

Tampa, Florida

Agenda

• MDS Disease background:• What is MDS and how common?• How and why do we stage patients?

• MDS treatment options:• Goals of therapy.• Lower risk MDS Treatment.• Higher risk MDS treatment.• Clinical trials.

• Factors influencing treatment choice:• Physical.• Psychosocial.

• The Nurse’s responsibilities in shared decision making:

• Assessment.• Education.

What is MDS?

A group of malignant hematopoietic disorders characterized by[1]

Bone marrow failure with resultant cytopenias and related complications

Macrocytic anemia is the most common presentation The disease has a tendency to progress to Acute Myeloid Leukemia. Of Greek origin “Myelo” prefix means marrow and “dysplasia” is a

term to describe abnormal looking blood cells.

Diagnostic Criteria Dysplasia in ≥ 10% of all cells in 1 of the following lineages in the

bone marrow smear: erythroid, neutrophilic, or megakaryocytic or > 15% ring sideroblasts (iron stain)

5% to 19% myeloblast cells. Specific chromosomal abnormality (by conventional karyotyping

or FISH).

Is MDS a “malignant neoplasm” ?

• MDS is a cancer diagnosis according WHO.

• Cancer is a term that describes disease(s) in which a mutation of a normal cell proliferates uncontrollably and invades surrounding tissues, or blood and lymphatic systems.

• MDS is spectrum of disorders.

• In a recent survey• 10% of patients agreed that MDS represented “cancer” compared

with 46% of HCP and 59% of physicians.

Steensma et al, Cancer. 2014 Jun 1;120(11):1670-6.

How common is MDS?

• One of the most common hematological malignancies or “Blood Cancers”.

• Estimates of 40,000 new cases in the US are diagnosed every year.

• The majority of patients are above the age of 60.

• Presents slightly more in males.

Goldberg et al. J Clin Oncol. 2010 Jun 10;28(17):2847-52

IPSS is the most common tool used for staging of MDS

Score Value

Prognostic variable 0 0.5 1.0 1.5 2.0

Bone marrow blasts < 5% 5% to 10% -- 11% to 20% 21% to 30%

Karyotype* Good Intermediate Poor -- --

Cytopenias† 0/1 2/3 -- -- --

Total Score

0 0.5 1.0 1.5 2.0 2.5

Risk Low Intermediate I Intermediate II High

Median survival, yr 5.7 3.5 1.2 0.4

*Good = normal, -Y, del(5q), del(20q); intermediate = other karyotypic abnormalities; poor = complex ( 3 abnormalities) or chromosome 7 abnormalities. †Hb < 10 g/dL; ANC < 1800/L; platelets < 100,000/L.

Greenberg P, et al. Blood. 1997;89:2079-2088.

Revised IPSS

Risk group Points % of PatientsMedian survival,

years

Time until 25% of patients develop

AML, years

Very low ≤ 1.5 19 % 8.8 Not reached

Low > 1.5 – 3 38 % 5.3 10.8

Intermediate > 3 – 4.5 20 % 3.0 3.2

High > 4.5 – 6 13 % 1.6 1.4

Very High > 6 10 % 0.8 0.73

100

Overall Survival, years

Pa

tie

nts

, %

00 2 4 6 8 10 12

20

40

60

80

Pa

tie

nts

, %

Time to AML Evolution, years

0 2 4 6 8 10 12

100

0

20

40

60

80

Very low Low Int High Very high

Age Dependence of the IPSS-R

www.ipss-r.com

Therapeutic Objectives for Patients with MDS

1. Cheson BD, et al. Blood. 2000;96:3671-3674.2. Cheson BD, et al. Blood. 2006;108:419-425.

Int, intermediate; IPSS, International Prognostic Scoring System; CR, complete remission; MDS, myelodysplastic syndromes; OS, overall survival; PR, partial remission; QoL, quality of life; RBC, red blood cell; TI, transfusion independence.

MDS Type (IPSS) Treatment Goals

lower-risk

• Achieving RBC-TI

• Hematologic improvement

• Improving QoL

higher-risk• Overall survival and AML transformation• Altering disease’s natural history • Improving QoL

Treatment of Lower Risk MDS

When do we need to treat lower risk MDS?

• The goal of treatment in lower risk MDS is to improve the patient’s blood counts and alleviate related symptoms.

• In asymptomatic patients with adequate counts treatment may not be needed or indicated.

• Providing confidence to patients in observation as an acceptable option is a major educational role for nurses.

• There is no evidence that early treatment benefit the patients. • A majority of patients will need treatment for anemia to

reduce or eliminate red blood cell transfusions. • Occasionally, treatment is directed to improve platelets or

neutrophils.

Supportive Care

• RBC transfusions are used for anemic patients who experience fatigue and/or shortness of breath. The frequency varies from patient to patient.

• MDS patients who require periodic red cell transfusions typically receive two units. Most of doctors will transfuse RBC if hemoglobin is less than 8 g/dl.

• The role of the nurse is to assess the patient’s need for transfusion

• Anemia related symptoms.• Comorbidities.

• There are several concerns related to RBC transfusions• Iron overload• Risk of retaining excess fluid• Transmission of infection

The role of the nurse is to assess and educate patients about transfusion complications, reactions.

• Despite the concerns, red cell transfusions improve the quality of life for patients with symptomatic anemia.

• Some patients may need platelets transfusion.

Erythroid Stimulating Agents (ESA)

• Used in lower risk MDS patients.

• First step for managing anemia.

• No difference between epoietin and darbepoietin. (dose equivalence).

• Start with a 8-12 weeks trial, if no response is elicited consider adding G-CSF weekly.

• Epoietin starting dose is 40,000 units weekly and may be escalated to 60,000 weekly.

• Average duration of response is 12-18 months among patients.

• No indication to continue with subsequent line of therapy.

ESA Nursing implications

• Idenitfying those patients who will benefit from ESA.• Symptomatic anemia: typically Hgb < 10 g/dl.• Assessing factors that predict higher response:

• serum erythropoietin level.• Transfusion burden.

• Educating the patient about ESAs and its side effects.

• Montioring patients during therapy:• Assess response by checking blood counts every 1-3 weeks

based on baseline and treatment schedule.• Continuously assess for side effects and manage

accordingly.

Lenalidomide in MDS

• Lenalidomide is the standard of care for lower risk MDS with del 5 q[1,2]

• Transfusion independence by IWG (67%).

• 90% of patients respond within 3-4 months and duration of response is almost 3 years.

• MDS-004 supports 10 mg as appropriate starting dose:

• Higher TI for 10 mg.

• Greater proportion of cytogenetic responses vs 5 mg (41% vs 17%).

• No significant differences in hematological toxicity.

• MDS-001, MDS-002 and MDS-005 provided evidence that lenalidomide could be a choice for anemia treatment in lower-risk non-del(5q) pts with adequate platelets and neutrophil count[3,4]

1. Fenaux P, et al. Blood. 2011;118:3765-3776. 2. List AF, et al. N Engl J Med. 2006;355:1456-1465. 3. List AF, et al. N Engl J Med. 2005;352:549-557. 4. Raza A, et al. Blood. 2008;111:86-93. 5. Sekeres MA, et al. J Clin Oncol. 2008;26:5943-5949 .

Lenalidomide: Nursing Implications

• Idenitfying those patients who will benefit from lenalidomide.• Lower risk MDS with del 5 q chromosomal abnormality.

• Educating patients about Lenalidomide: • Revassist program. • Setting patients expectations:

• There is a high chance of response• Expected 3-4 months of treatment before response.• Anticipating cytopenia with treatment and need for holding

treatment but reassuring patient that this is a sign of response.

Lenalidomide: Nursing Implications

• Expected side effects:• Cytopenia• Rash• GI: upset and diarrhea• Hypothyroidism.• Leg cramps

• Monitoring patients during therapy:• Weekly CBC/diff first 8 weeks and then monthly after.• 80% of patients will need dose interruption within 3 weeks and on

average treatment is held for 3 weeks then restarted with 5 mg po daily.

• Continuously assess and manage other adverse events.

Immunosuppressive Therapy (IST)

• One course Anti-thymocyte globulin (ATG) +/- Cyclosporine-A (CSA)

• Positive variable for IST response[1,2]

• Age is the strongest variable for response ( < 60 year)• HLA-DR 15 status• Short Duration of disease.• Trisomy 8• Hypoplastic MDS• PNH clone

• Responses are durable and trilineage responses are observed[2]

1. Saunthararajah Y, et al. Blood. 2002;100:1570-1574. 2. Sloand EM, et al. J Clin Oncol. 2008;26:2505-2511. 3. Sloand E, et al. ASH 2004. Abstract 1431.

IST: Nursing Implications

• Idenitfying those patients who will benefit from ATG/CS:

• Young < 60 year, lower risk MDS and HLA-DR15 positive.

• Educating patient about ATG/CSA:• Setting patients expectations:

• Hospitalization- 5 days for ATG• Expected 4-6 month after starting

treatment achieve a response.• Expected side effects:

• ATG• Infusion reactions• Cytopenia• Serum sickness• Infections

• Cyclosporine• Renal toxicity.• Hypertension.• Electrolytes imbalance. • Neurological toxicity .• GI toxicity.• Hisutism.• Infection.

• Monitoring patients during therapy• ATG is administered in the hospital,

monitor for infusion and anaphylactic reactions.

• Weekly CBC, CMP, cyclosporine trough levels at the beginning and then as needed clinically.

• Continuously assess and manage other adverse events.

Iron Chelation Therapy in MDS

Characteristic NCCN[1] MDS Foundation[2]

Transfusion status

Received > 20 RBC transfusions

Continuing transfusions

Transfusion dependent, requiring 2 units/mo for > 1 yr

Serum ferritin level

> 2500 μg/L 1000 μg/L

MDS risk IPSS: low or intermediate-1 risk

IPSS: Low- or Int-1 WHO: RA, RARS and 5q-

Patient profile Candidates for allografts Life expectancy > 1 yr and no comorbidities that limit progress

A need to preserve organ function

Candidates for allografts

1. NCCN. Clinical practice guidelines in oncology. MDS. v2.2013. 2. Bennett JM, et al.. J Hematol. 2008;83:858-861.

ICT

• Box warnings

• Noted more often when administered in excess of iron burden

• Deferoxamine: ocular and auditory disturbances, acute renal failure, hepatic dysfunction, adult respiratory distress syndrome, growth retardation in children

• Deferasirox: renal failure, hepatic failure, gastrointestinal hemorrhage

• Deferiprone: agranulocytosis, infection (leading to death)

Neufeld EJ. Hematology Am Soc Hematol Educ Program. 2010;2010:451-455.

 Table[1] Deferoxamine Deferasirox Deferiprone

Administration SC or IV, continuous infusion 5-7 days/wk

Oral suspension Oral tablet

Common AEs Local skin reaction, hearing loss, late bone problems

Rash, GI disturbances, diarrhea, mild changes in creatinine, proteinuria, transaminases

GI disturbances, joint pain, arthritis

Severe AEs Retinopathy, acute pulmonary distress

Peptic ulcers, liver or renal dysfunction leading to failure, cytopenias

Agranulocytosis, neutropenia

Cost $$ $$$$ $-$$

ICT: Nursing Implications

• Identifying those patients who will benefit from ICT:• Patients with evidence of iron overload due to RBC transfusions typically

present after 15-20 units.• Elevated serum ferritin levels in laboratory studies.• Lower risk MDS.

• Educating patients about ICT:• Monitoring Iron overload.• Options of ICT : Desferral pump versus oral iron chelation. • Expected side effects.

• Monitoring patients during therapy:• Weekly CBC, CMP for first 1-2 month and monthly thereafter.• Observe renal function and GI toxicity with Deferasirox.• Continuously assess and manage adverse events.

Treatment of Higher Risk MDS

Hypomethylating Agents

• Two medications approved by FDA:• Azacitidine: First FDA approved drug for MDS.• Decitabine.

• Administered subcutaneously or intravenously.

• Low dose chemotherapy with unique mechanism of action.

• In general well tolerated by patients.

• Response rates of 40-50%.

Hypomethylating Agents (HMA)

• Azacitidine is the preferred HMA given OS data in higher risk MDS.

• HMA are standard of care for higher risk MDS• 7 day regimen is preferred

• HMA are treatment option for lower risk MDS patients

• Thrombocytopenia• 5 day regimen is accepted for administration.

HMA: Nursing Implications

• Identifying those patients who will benefit from HMA:• Higher risk MDS patients.• Lower risk MDS patients with thrombocytopenia or a subsequent line of

therapy for anemia.

• Educating patients about HMA:• Setting patients expectations:

• Responses seen at 4-6 month.• Worsening of blood counts during the first two cycles.• Need to continue therapy among responders.

• Expected side effects:• Myelosuppression.• Nausea and vomiting. • Constipation.• Injection site reactions.

• Montioring patients during therapy:• Weekly CBC at the beginning of therapy. • Assessing responses after 4-6 cycles.

Allogeneic Hematopoietic Stem Cell transplant

Koreth J, et al. J Clin Oncol. 2013;31:2662-2671.

Allogeneic Stem Cell Transplant (HSCT): Nursing Implications

• Identifying those patients who will benefit from HSCT:• Fit and no major comorbidities.• Higher risk MDS. • Decision about pursuing allo SCT is complex and is a multi-disciplinary approach

including active participation of the patient/family need to be involved.

• Educating the patients about HSCT:• Setting patients expectations:

• Transplant procedure.• Transplant logistics.• Quality of life issues and need for caregiver.

• Expected side effects:• Chemotherapy related.• Infections.• GVHD.

• Monitoring patients after HSCT:• After transplant intense monitoring up to 1 year with frequent visits,

and bone marrow aspirate/biopsy repeats.

Type of Salvage

N ORR Median OS, Mos

Unknown 165 NA 3.6

Best supportive care

122 NA 4.1

Low-dose chemotherapy

32 0/18 7.3

Intensive chemotherapy

35 3/22 8.9*

Investigational therapy

44 4/36 13.2*†

Allogeneic transplantation

37 13/19 19.5*†

Prébet T, et al. J Clin Oncol. 2011;29:3332-3327.

*Log-rank comparison of BSC vs intensive CT (P = .04), investigational therapy (P < .001), or alloSCT (P < .001). †Comparison of intensive CT vs investigational therapy (P = .05), intensive CT vs ASCT (P = .008), or IT vs ASCT (P = .09).

Salvage Therapy After Azacitidine Failure: Clinical Trials offers best non transplant outcome

100

75

50

25

00 365 730 1095 1460

OS

(%

)

Days Since AZA Failure

Investigational

Allo-SCT

Clinical Trials: Nursing Implication

• Clinical trials are considered the standard of care for treating MDS patients.

• Nurses play a crucial role in educating patients about the process of clinical trials, expectations and clearing any misconceptions.

• Moffitt Cancer Center Malignant Hematology SLIC project.

Factors Influencing Treatment Choice Physical and Psychosocial

Physical Factors Influencing Treatment: Nursing Implications

• Age:• Goal and selection of therapy.

• Functional status.• Comorbidities:

• Selection of therapy.• Adjustment of treatment doses.• Addressing impact of MDS on comorbidities.

Psychosocial Factors Influencing Treatment: Nursing Implications

• Patient disease perception.

• Coping with Disease.

• Quality of life.

• Patient support: Family and caregivers

• Logistics of treatment.

• Financial implications for patients.

Disparity in Perceptions of Disease Characteristics, Treatment Effectiveness, and Factors Influencing Treatment Adherence

• Only 29% of patients reported that MDS was ever “curable” compared with 52% of physicians (P < .001).

• Physician, nurses, and patient perceptions of specific MDS therapies were significantly different, especially regarding health-related quality of life during treatment, adverse events, and the impact of treatment on patient activities.

• HCP viewed the potential benefits of active treatment as being significantly greater than did patients.

• Patients perceived the actual treatment experience more positively than physicians or nurses.

• Nurses were less sanguine about the benefit of specific therapies and were more aware of the burdens on patients than physicians, possibly because of more frequent contact with patients undergoing therapy.

• Several non disease specific tools used for QOL assessment in MDS.

• QUALMS-1 is MDS disease specific Quality of Life Scale developed at Dana Farber and being validated externally.

Moffitt Cancer Center PI: Sara Tinsley Sara.tinsley@moffitt.org

Abel et al Blood. 2014 Jan 16;123(3):451-2

Nurse Responsibility in Shared Decision Making

To Summarize

• Maintain a major influence in the patients education.• Disease.• Treatment.• Coping.

• Identifying most appropriate therapy options for patients based on:

• Disease risk. • Efficacy and adverse events of therapies.• Physical factors such as comorbidities.• Psychosocial factors.

• Educating patients and caregivers about disease expectations.

• Monitoring and addressing adverse events.

• Assessing patient benefit from therapy.

Question One

1. Which of the following is true about patients and health care providers perception for Myelodysplastic syndromes (MDS):a. All doctors and health care providers recognize MDS as

cancer but only 50% of patients do. b. Physician, nurses, and patient perceptions of specific

MDS therapies were similar regarding health-related quality of life during treatment, adverse events, and the impact of treatment on patient activities.

c. Nurses are more aware of the disease burden on patients than physicians, possibly because of more frequent contact with patients undergoing therapy.

Question Two

1. Which of the following is false regarding use of Lenalidomide in del 5 q lower risk MDS:

a. Lenalidomide yields 67% transfusion independence rate with median duration of response 2-3 years.

b. Almost 80% of patients will need dose interruption in first 8 weeks but cytopenias on therapy predict the response.

c. Major side effects with Lenalidomide in MDS include myelosuppression, rash, GI upset and diarrhea.

d. Lenalidomide response is observed at 4 weeks in 90% of the patients.

AcknowledgementPatients and Caregivers

Moffitt MDS Program MDS Clinical ConsortiumRami S KomrokjiAlan List Eric PadronJeffrey Lancet Edward P Evans Foundation Javier Pinilla-IbarzLubomir SokolPK BurnetteSheng Wei Aplastic Anemia and MDS FoundationDana RollisonSara TinsleyNajla Al Ali Lisa NardelliHanadi RamadanAmanda CameronCindy BenoitBeth Finley Oliver

Christa.roe@moffitt.org

Enhancing the Oncology Nurse's Role in MDS Patient Communication

and Education Communication Strategies for MDS Patient and

Caregiver Education

Leslie Pettiford, RN, MS, CCRC

UF Health Cancer Center

Clinical Trials Office

Malignant Hematology Division

Objectives

• Define patient-centered communication

• Describe how effective communication is a process between the clinician and patient/family that occurs during individual interactions

• Describe how effective communication can facilitate improved communication and healthcare outcomes

Communication in the Cancer Setting

• Receive bad news

• Understand complex information

• Communicate with health professionals

• Understand statistics related to prognosis

• Deal with uncertainty while maintaining hope

• Build trust

• Make decisions about treatment

• Adopt health-promoting behaviors

Patient-Centered Care

• Respect • Coordination and integration of care• Physical comfort• Emotional support• Involvement of family and friends

Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press; 2001.

Patient-Centered Care

Informed, activated,

participatory patient and family

Accessible, well-organized,

responsive health care system

Patient-centered communication

clinician

Improved Communication

Improved Health Outcomes

Epstein RM, Street RL, Jr. Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. National Cancer Institute, NIH Publication No. 07-6225. Bethesda, MD, 2007.

Patient-Centered Communication

• Communicating effectively is the cornerstone of quality health care

• Eliciting, understanding, and validating the patient’s and family’s perspective

• Understanding the patient in his/her own context

• Reaching an understanding of the patient’s problem and treatment

• Offering the patient involvement in choices relating to health care

• Understanding = increased likelihood to understand options, modify behavior, and adhere to instructions

Patient-Centered Care Guide. (n.d.). March 31, 2015, from http://www.patient-centeredcare.org/inside/practical.html#common

Motivation

Health Care Providers• Motivated to provide high-quality care

• Can be compromised Rushing through a consultation Avoiding topics

• Not only the transfer of information but also the key to forming relationships

Patients• Talk openly and honestly

• Deliberately avoid topics embarrassing or uncomfortable fear of disapproval believe is not pertinent to the interaction

Motivation

Knowledge

Health Care Providers• Patient’s Perspective

Challenging to have an accurate understanding

Aids the provider Misunderstanding contributes to bias

• Understanding of the MDS diagnosis• Educational Tools

Knowledge

Patients• Health literacy• Understanding of health • Minimal understanding of health concepts and

terminology• Decision-making and informed consent• Patient education

Skill - Health Care Providers

• Maintaining eye contact

• Forward lean to indicate attentiveness

• Nodding to indicate understanding

• Absence of distracting movements (fidgeting, checking time)

Non-verbal Behaviors Verbal Behaviors• Avoiding interruptions

• Establishing purpose of visit

• Encouraging participation

• Soliciting the patient

• Eliciting and validating the patient’s emotions

• Asking family and social context

• Providing sufficient information

• Checking for patient understanding

• Offering reassurance, encouragement and support

Skill - Patients

Active Communication Behaviors

• Asking questions• Communicating assertively• Expressing concerns and

feelings• Telling health “story” in the

context of everyday life

Passive Communication Behaviors

• May put health outcomes at risk

• Will not satisfy the patient’s need to feel known, understood or heard

• Will not satisfy the clinician’s obligation to address the patient’s concerns in order to maximize healing

How does this relate to patients with MDS?

• 2014 AA&MDSIF Survey Results: Disparities in Perceptions of MDS Understanding Between Patients and Nurses

• Challenges to patient and family satisfaction

• Patient-Centered approach

• Improvement of satisfaction, overall care, and outcomes for patients with MDS

QUESTION 1

Which of the following is not a characteristic of patient-centered communication?

a) Validating patient’s concerns

b) Understanding the patient within his or her own psychological and social context

c) Rushing through an encounter with a patient to get the clinic back on schedule

d) Encouraging patient and family participation in health care decisions

QUESTION 1

Which of the following is not a characteristic of patient-centered communication?

c) Rushing through an encounter with a patient to get the clinic back on schedule

Aligning Perspectives

• Communication is an outcome• Alignment of perspectives

Mutual influence Common goals Adaptations

Mutual Influence

• Joint construction of clinical encounter• Active communication behaviors• Introduce topics• Facilitate better communication

Shared Goals

• Goals Expectations Preferences Perceived purpose

• Specific and explicit Early in the visit Satisfaction Adherence

Adaptation

• Key to effective patient-centered communication

• Presenting information in a manner that the patient understands

• Rephrasing or restating information• Periodically checking patient and family

understanding• Errors and misinterpretations• Conversation repair

QUESTION 2

Which of the following is an example of an effective communication technique?

a) Maintaining eye contact and nodding to indicate understanding

b) Interrupting the patient while he is telling you about his concerns

c) Avoiding difficult questions and answers

d) Reading the next patient’s chart during the encounter

QUESTION 2

Which of the following is an example of an effective communication technique?

a) Maintaining eye contact and nodding to indicate understanding

Outcomes of Effective Communication

• Direct or indirect contributions• Positive Outcomes

Quality of the encounter Patient outcomes Health outcomes

Quality of the Encounter

• Patient’s viewpoint Feeling understood Actively participating Improved understanding Getting help Establishing trust

• Provider’s viewpoint Satisfaction Understanding of the patient’s perspective Provided high-quality health care Rapport with the patient

Patient Outcomes

• Strong therapeutic alliances• Patient knowledge and understanding• Emotional self-management• High-quality medical decisions• Family/social support and advocacy• Patient self-efficacy, empowerment, and

enablement• Improved adherence, health habits, and self-

care• Access to care and effective use of the health

care system

Health Outcomes

• Primary• Improved survival• Improved health-related quality of life• Improved emotional well-being and

psychological symptoms• Greater satisfaction and decreased emotional

distress

Importance of Context

• Disease factors (e.g., type of cancer, stage of disease)

• Family and social environment• Cultural context• Media environments (e.g., coverage of health

topics, access to information)• Health care system• Societal factors (e.g., laws, socioeconomic

status)

QUESTION 3

Mrs. R mentioned to her nurse that she is worried that her new medicine for her diagnosis of MDS is not working since she has been feeling more tired since she started taking it. Which of the following statements would be the most appropriate to validate her feelings?

a) “You should just start taking your pill before you go to bed.”

b) “Uh-huh. Let’s take you blood pressure, the doctor will be in shortly.”

c) “What medicine are you taking? Maybe you need your blood counts checked.”

d) “This is making you worried. It is common for many patients to feel more tired when they first start taking medication for the treatment of MDS. Let me get you a patient educational guide about this treatment and how to manage the side effects.”

QUESTION 3

Mrs. R mentioned to her nurse that she is worried that her new medicine for her diagnosis of MDS is not working since she has been feeling more tired since she started taking it. Which of the following statements would be the most appropriate to validate her feelings?

d) “This is making you worried. It is common for many patients to feel more tired when they first start taking medication for the treatment of MDS. Let me get you a patient educational guide about this treatment and how to manage the side effects.”

Resources

• Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press; 2001.

• Epstein RM, Street RL, Jr. Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. National Cancer Institute, NIH Publication No. 07-6225. Bethesda, MD, 2007.

• Patient-Centered Care Guide. (n.d.). March 31, 2015, from http://www.patient-centeredcare.org/inside/practical.html#common

• Patients And Physicians Have Different Perceptions Of Myelodysplastic Syndromes - The MDS Beacon. (n.d.). Retrieved March 31, 2015, from http://www.mdsbeacon.com/news/2014/04/02/patient-physician-perceptions-myelodysplastic-syndromes/

AcknowledgementsUF Health Cancer CenterHematology Oncology DivisionJohn Wingard, MDW.S. May, MD, PhDJan Moreb, MDJohn Hiemenz, MDRandall Brown, MDChris Cogle, MDJack Hsu, MDMaxim Norkin, MD, PhD

AA&MDS International FoundationPatients and Families

Thank You! Leslie Pettiford, RN, MS, CCRC

lpettiford@ufl.edu