improving patient standards and compliance with nurse

Oncology Nursing Society 44th Annual CongressApril 11–14, 2019 • Anaheim, CA

1Clinical Practice

1. Utilizing Technology to Provide an Oncology Nurse Navigator Supported Patient Engagement Survivorship Program Mary McQuaige, BSN, RN, OCNUniversity of Maryland Greenebaum Comprehensive Cancer Center Baltimore, MD [email protected]

2. The Significance of a Leukemia and Lymphoma Nurse Navigator Ashlee Nickens, RN, OCN VCU Health Massey Cancer Center Richmond, VA [email protected]

3. Impact of Genetic Patient Navigation to Facilitate Hereditary Mutation Carriers Comply with NCCN Management Guidelines and to Enable Healthy Behaviors (Cancer Prevention Research Institute of Texas PP160110) Kathryn Pratt, BSN, RN, OCN, CBCN University of Texas Southwestern Medical Center Dallas, TX [email protected]

Improving Patient Standards and Compliance With Nurse NavigatorsThursday, April 11 • 2:45–4 pm

Note one action you’ll take after attending this session: ________________________________________________________________________________________________________________________________________________

ONS 44th Annual Congress

Clinical Practice (McQuaige) 1

Utilizing Technology to Provide an Oncology Nurse Navigator Supported Patient Engagement Survivorship

ProgramMary McQuaige, BSN, RN, OCN

Oncology Nurse NavigatorUniversity of Maryland Greenebaum Comprehensive Cancer Center

Baltimore, MD

• No disclosures to report

Disclosures



• Increasing new cancer cases in US• American Cancer Society 2018: 1.7 million

• Increasing cancer survivors in US• American Cancer Society 2016: close to 15.5 million • Expected to exceed 20 million by 2026

• Increased survival rates challenge us to discover innovative methods to provide patient centered ongoing survivorship care

American Cancer Society, Cancer Facts & Figures 2018, https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2018.html, 2018

Background

Background

• Transitioning from the active cancer treatment phase to the post-treatment phase• Stressful• Lingering symptoms • Physical, psychosocial, and spiritual challenges

• Survivors are at risk for being lost during this transition and missing out on the close follow-up that they need.

Survivorship Care• Survivorship Care Models- single visit• Barriers to Survivorship Care• Transportation• Cost• Work-Life Balance

• Need option for ongoing support• Electronic• At patient’s pace• Eliminates barriers



Purpose

• Develop and pilot-test an electronic Cancer Survivorship Patient Engagement Toolkit (CaS-PET) • Survivorship Care Plans (SCP)• Bi-weekly MyPortfolio (patient portal) with eMessage follow-up• Online education resources• Anonymous discussion board

Goals of CaS-PET

• Engage patients in their survivorship care• Increased patient portal sign-up and use • Foster communication between ONN and patients• Continue connection after active treatment• Provide proactive support

• Improve quality of survivorship care• Offer online support beyond cancer treatment

Methods: Design• Design:• Pre-post design study• Focus group meeting at the end

• Eligibility• 18 years of age & older• Diagnosed with solid tumor• Treated with curative intent (Stages 0-3)• Within 6 months of end of treatment• Able to use the internet/email independently• Having (or willing to have) a Patient Portal

• Recruitment• 30 cancer survivors



Overview of Process

Full Screening and Consenting Process

Online baseline survey

6 Bi-Weekly eMessages(Well Beyond Cancer)

First session: Review of SCP and goal-setting with ONN

Last session: Participants encouraged to contact ONN to evaluate progress

Follow-Up Survey and Focus Group Meeting

(Upon completion, a $20 incentive check will be mailed to each participant)

Oncology Nurse Navigator Support

• Identified eligible participants• Developed SCP• Multidisciplinary Team input• Patient input

• Survivorship Visit• Review SCP and patient goals

• Engaged with patients• Patient portal messages• Discussion board communications

• Follow up communication • Evaluation of goals

Well Beyond CancerOnline Support Program

Session Topic Mode1

(Week 1-2)Transition to Survivorship

Face-to-Face

Online

• By ONN: Review of SCP’s, Goal setting• Introduction to the Patient Portal/Well Beyond Cancer program

• M odule 1: Cancer Survivorship; SCP’s; M anaging your health • Virtual library

2(Week 3-4)

Nutrition Online • M odule 2: Food to eat; Food preparation; Special considerations • Virtual library

3(Week 5-6)

Exercise Online • M odule 3: Benefits of exercise; Guidelines to follow; Considerations for survivorship• Goal setting / Virtual library

4(Week 7-8)

Cancer and Relationships

Online • M odule 4: Sexuality and intim acy; Work after treatm ent; Fertility and pregnancy; Parenting• Goal setting / Virtual library

5(Week 9-10)

Fear/M entalHealth

Online • M odule 5: Fear of recurrence; Depression and anxiety; Concerns about body im age; How to deal with difficult em otions

• Goal setting / Virtual library

6(Week 11-12)

StressM anagem ent

Wrap-up

Online

Face-to-Faceor phone

• M odule 6: How to m anage stress; W hat is m indfulness; practicing m indfulness• Goal setting / Virtual library

• ONN: Overall evaluation of goal accom plishm ents; Identification of further care needs and revise the SCP as needed



Sample of Module (Week 2 Nutrition)

Sample of Discussion

EvaluationPhysical/Mental Symptoms

Symptoms ReportedLack of Energy 77% n=23

Pain 63% n=19

Worrying 50% n=15

Difficulty Sleeping 47% n=14

Feeling Sad 47% n=14

Constipation 43% n=13

Feeling Bloated 43% n=13

Feeling Drowsy 37% n=11

Cough 33% n=10

Numbness/Tingling in hands/feet 33% n=10



Evaluation

• ONN’s engaged with patients• Discussion board participation led to follow up from ONN• Patients connected to support services/resources

• CaS-PET effective in supporting cancer survivors during time of transition• ONN’s report a positive experience that enhanced job satisfaction • “It was very satisfying to be part of a group of professionals who share my

passion for providing impactful, patient centered care!”

Patient Experience

• Survivorship Care Plan Feedback- positive• “The plan helped me move from treatment to living in the present. I was

stuck in the cancer mode and the plan enabled me to see a future in survivorship. It helped me plan and set realistic goals.”

• Well Beyond Cancer Feedback- positive• “It gave me a better understanding of the importance of obtaining knowledge

pertaining to my treatment and proper questions to ask.”

ONN Challenges

• SCP development/delivery• Needing to develop SCP quickly

• Time consuming• Coordinating survivorship visit to deliver SCP

• Barriers (travel, parking, time off work, etc)• Last minute change in provider appts



Accomplishments

• Development of CaS-PET• Well Beyond Cancer online resources

• Development of online education symptom modules• Based on cancer symptoms data- ex: pain, fatigue, GI

• Submission of NIH grant proposal• Submission of Manuscript• Submission of Abstracts• More to come…

• Baseline assessment presented impactful findings that demonstrate the benefit of expanding this program to address concerns during post- treatment survivorship and beyond!

Teamwork!

• Abstract Co-Authors:• Nancy Corbitt, BSN, RN, OCN, CRNI• Nicholas Jaidar, MHA, FACHE• Eun-Shim Nahm, PhD, RN, FAAN• Hyo Jin Son, MSN, RN

• CaS-PET is managed by the Dept. of Nursing Informatics at the University of Maryland School of Nursing, directed by Dr. Eun-Shim Nahm• Study funded by a Sigma Theta Tau Pi Chapter Grant

• American Cancer Society, Cancer Facts & Figures 2018, https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2018.html, 2018.• Institute of Medicine, From Cancer Patient to Cancer Survivor: Lost in Transition,

National Academies Press, Washington, DC, 2006.

References


Clinical Practice (Nickens) 1

Ashlee Nickens RN, BSN, OCNLeukemia and Lymphoma Nurse Patient Navigator at Massey

Cancer Center

The Significance of a Leukemia and Lymphoma Nurse Navigator



• Currently serve on Nursing Speakers Bureau for Jazz Pharmaceuticals: Nursing Considerations for Managing AML

Disclosures

• Ashlee Nickens RN, BSN, OCN• Oncology Nurse for 13 Years• Inpatient Hematology Nurse for 7 years• Outpatient Leukemia and Lymphoma Nurse Patient Navigator for 6

years

Who am I?

Massey Cancer Center

• NCI-Designated• Part of Virginia Commonwealth University and VCU Health• Average 15,000 patients annually• Twelve Disease Specific Navigators



What is Special about L&L?

• Leukemia and Lymphoma- aka L&L• Unique Population• Often acutely ill upon diagnosis• Inpatient hospitalization• Require close follow up• Extensive Clinic time

What is L&L?

• Acute Leukemia• AML• ALL

• High Grade Lymphomas• Diffuse Large B-Cell Lymphomas• Hodgkin's Lymphoma• CNS Lymphoma

• Multiple Myeloma

Unique Needs

• Inpatient and outpatient• Emotional Support• Financial Toxicity • Resources• Patient – full time job



Decrease Length of Stay

• Center for Medicare and Medicaid Standard for AML induction is 18 days

• In FY 2017 VCU Health average was 24 days

• Current average is 21 days

• Set Discharge Criteria• 60 minutes from Hospital• Able to come to clinic Monday, Wednesday, and Friday or more if needed• Discharge with all appointments made and follow up• Neutropenic Education

Transition of Chemotherapies

• Many chemotherapies are traditionally given inpatient but some can safely be given outpatient• Home Infusion Pumps• EPOCH• ICE

• Re-inductions• FLAG +/- Ida• MEC

Outpatient Needs

• Increase Clinic volume• Frequent monitoring - labs• Transfusion dependence• Increased Clinic Staff Education



Care Team

• Vital part of the Care team• Physician• Nurse Practitioner• Primary Nurse• Nurse Patient Navigator• Social Worker• Pharmacist• Treatment Room Nurse

Patient

Nurse Patient Navigator

Physician

Primary NurseTreatment Nurse

Social Worker

Pharm acist Nurse Practitioner

Bridge

• Follow patient across care continuum• Continuity of Care• Accesable• Cell Phone• Patient Portal

Key Take Aways

• Nurse Patient Navigators are disease Nurse Experts• Leukemia and Lymphoma Patients are Unique• Increased Patient Support and Increased Patient Satisfaction with

implementation of Leukemia and Lymphoma Nurse Patient Navigator



Contact Information

Ashlee [email protected]

• FY2019-IPPS-Final-Rule-Tables. (2018, December 03). Retrieved from https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/AcuteInpatientPPS/FY2019-IPPS-Final-Rule-Home-Page-Items/FY2019-IPPS-Final-Rule-Tables.html Table 5

• Massey Cancer Center, www.massey.vcu.edu

References

mailto:[email protected]

http://www.massey.vcu.edu/


Clinical Practice (Pratt) 1

Kathy Pratt, BSN, RN, OCN®, CBCN®, ONN-CG™Genetic Patient NavigatorHarold C. Simmons Comprehensive Cancer CenterUniversity of Texas Southwestern Medical CenterDallas, TX

• Clinical Care Options, LLC• Faculty Speaker

• Cancer Prevention and Research Institute of Texas (CPRIT)• Grant recipient

Disclosures



Impact of Genetic Patient Navigation to Facilitate Hereditary Mutation Carriers with NCCN Management Guidelines and to Enable Healthy

Behaviors

(Cancer Prevention Research Institute of Texas PP160110)

Why is Cancer Genetics Important?• 5-10% of all cancer is

hereditary

• If patients identified early • Increased screening • Risk-reducing surgeries • Behavior modifications

• Can help family members know they may be at risk http://www.canstockphoto.com /

Most Common Inherited Cancer Predisposition Syndromes

• Lynch syndrome (LS)• 1 in 279 Americans has Lynch

syndrome

• Hereditary Breast and Ovarian Cancer syndrome (HBOC)• 1 in 400 Americans carries a

BRCA1 or BRCA2 mutation

• 98% of people with Lynch syndrome and 65% of patients with HBOC don’t know they carry a hereditary predisposition

• Dominant pattern of inheritance

• Low genetic health literacy of non-genetic healthcare providers

Win (2016), Whittemore (2004), Ponder (2000), Hampel (2011), Drohan (2012), Pal (2013); Plon (2011)



Cancer Risks: HBOC(Other HBOC-related cancers: Prostate, pancreatic, melanoma, male breast)

1220

1.5

72

4044

0

10

20

30

40

50

60

70

80

Breast Cancer 2nd Breast Ca ncer Ova rian Ca ncer

Risk

%

Genera l Popula ti on HBOC

Kuchenbaecker, et al. (2017)

Cancer Risks: Lynch Syndrome(Other LS-related cancers: Prostate, hepatobiliary tract, urinary tract,

small bowel, brain/ CNS, sebaceous neoplasms, pancreas)

4.5 2.7 1 1

11.6

82

60

13

2430

0

10

20

30

40

50

60

70

80

90

Colon Endometrial Gastric Ova rian Prosta te

% R

isk

Genera l Popula ti on LS

Siegel, Miller et al (2017); Cheng et al (2011); Henley et al (2015); Siegel, Ward et al (2011); Siegel Miller et al (2016; Bailey et al (2014); Burt, Neklason (2005); Giardieelo, Offerhaus (1995).

NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®)• Evidence-based, consensus-driven management guidelines for

optimal patient outcomesa

• Preventive, diagnostic, treatment, supportive• Guidelines for Detection, Prevention, and Risk Reductionb

• Genetic/ Familial High-Risk Assessment: Breast and Ovarian• Genetic/ Familial High-Risk Assessment: Colorectal

National Comprehensive Cancer Network®(NCCN)

aAdapted from “About the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®).bReferenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines® ) for Genetic/ Familial High-Risk Assessment: Breast and Ovarian V3.2019-January 18, 2019. © National Comprehensive Cancer Network, Inc. 2019. All rights reserved. Accessed February 14, 2019. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.

bReferenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines® ) for Genetic/ Familial High-Risk Assessment: Colorectal V1.2018-July 12, 2018. © National Comprehensive Cancer Network, Inc. 2019. All rights reserved. Accessed February 14, 2019. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.



• National leader in hereditary cancer research

• Over last 25 years• > 34,000 patients seen• > 4,400 mutation carriers identified • 32% patient population

• 60% of grant population uninsured/ underserved

• UTSW initial data regarding uptake of management guidelines

UT Southwestern Medical CenterCancer Genetics Program

Genetic Patient Navigator (GPN) Implemented through CPRIT grant

• Provide patient assistance with focus on uninsured/ underserved population

• Provide professional educational services

Contact of HBOC/ LS Probands by Genetic Patient Navigator (GPN)

• Ascertain follow-up information regarding cancer risk reduction• Evaluate lifestyle factors/ social support barriers• Educate patients for specific cancer risks and facilitate referrals• Provide lifestyle factor counseling• Make referrals to previvorship programs• Recorded identified at-risk relatives per proband and provide

education to promote testing

Interventions



Expand awareness of HBOC & LS and hereditary cancer patient identification and management guidelines in targeted populations.

• Oncology nurses and oncology nurse navigators• Physicians and advanced practice providers

Interventions (continued)

Results:Due to GPN intervention:

• 436 people navigated to 431 services across 24 counties• 51 people scheduled/ received

survivorship services• 92 people improved their health

behaviors• 64 people received a physician

referral

www.cfah.org

Results: Compliance

39 40

8175 73

7872 72

90

64 64

88

0

10

20

30

40

50

60

70

80

90

10 0

Breas t Com pliant rrBSO Com pliant Colonoscopy Compli ant

% C

ompl

iant

Ba sel ine Und erser ved Und erser ved P ost In ter vent ion

Ba sel ine In su red Insu red Post I nte rven tio n



Results: Cascade Testing

2.1

2.7

0

0.5

1

1.5

2

2.5

3

Basel ine Upda ted

Num

ber

Test

ed

Genetic Testing of Family Members per Proband GPN Impact:

• Follow-up• Reducing barriers

• Providing additional resources

Family Pedigree Example

In 24 months:

• 2,357 professionals educated →16 professional outreach events →25 counties

• 62 public education services--578 people educated

• Continuing Medical Education (CME) online video

Intervention: Professional Education(Cancer Genetics Program-Wide)



• Privacy issues related to deceased patients

• Patients frequently do not return phone calls

• Frequent out-of-date phone numbers for underserved population

• Individual patient contacts required greater time commitment than anticipated• Overall lower number of patients contacted than anticipated

Discussion: Issues Encountered

• Developed online and paper compliance survey

• Compiled database of email addresses for approximately 1,200 patients.

• Anticipate increased patient connections using this alternate method of communication will increase• Volume of patients contacted• Response rates from patients

Discussion: Actions Taken

Conclusions

GPN role instrumental in: • Identifying and addressing barriers to care • Educating high-risk patient population • Identifying at-risk family members and direct to genetic counseling/

testing• Education of non-genetic healthcare providers

Explore alternative methods of patient contact moving forward



Chen, S., Parmigiani, G. Meta-analysis of BRCA1 and BRCA2 Penetrance. (2007). Journal of Clinical Oncology, Volume 25:11, 1329-1333. doi: 10.1200/JCO.2006.09.1066 Daly, M.B., Pilarski, R., Berry, M., Buys, S.S., Farmer, M., Friedman, S., . . . Dwyer, M. (2019). NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines ®). (2019, Version 3.2019-January 18, 2019). Genetic/ familial high-risk assessment: Breast and ovarian. Retrieved from https://www.nccn.org/professionals/physician_gls/pdf/genetics_screening.pdf. Daly, M.B., Pilarski, R., Berry, M., Buys, S.S., Farmer, M., Friedman, S., . . . Darlow, S. (2017). NCCN Guidelines® Insights: Genetic/ familial high-risk assessment: Breast and ovarian, Version 2.2017. Journal of the National Comprehensive Cancer Network, 15(1): 9-19.Drohan, B., Roche, C., Cusack, J., & Hughes, K. (2012). Hereditary breast and ovarian cancer and other hereditary syndromes: Using technology to identify carriers. Annals of Surgical Oncology, 19: 1732-1737. doi:10.1245/s10434-012-2257-y.Foulkes, W.D. (2008). Inherited susceptibility to common cancers. The New England Journal of Medicine, 359; 20, 2143-2153. Hampel, H., & de la Chapelle, A. (2011), The search for unaffected individuals with Lynch syndrome: Do the ends justify the means? Cancer Prevention Research (Phila), 4(1), 152-162. doi:10.1158/1940-6207.CAPR-10-0345. Kuchenbaecker, K.B., Hopper, J.L., Barnes, D.R., Phillips, K.A., Mooij, T.M., Roos-Blom, M.J., . . . Antoniou, A.C. (2017). Risks of breast, ovarian, and contralateral breast cancer for BRCA1 and BRCA2 mutation carriers. Journal of the American Medical Association, 317(23):2402-2416. doi:10.1001/jama/2017.7112.National Comprehensive Cancer Network. About the NCCN clinical practice guidelines in oncology (NCCN Guidelines®). Retrieved from https://www.nccn.org/professionals/default.aspx.Mavaddat, N., Peock, S., Frost, D., Ellis, S., Platte, R., Fineberg, E., . . . Easton, D. (2013). Cancer risks for BRCA1 and BRCA2 mutation carriers: Results from prospective analysis of EMBRACE. Journal of the National Cancer Institute, Volume 105 (11). 5 June 2013, 812-822. doi:10.1093/jnci/djt095.

References

Moyer, V.A. (2014). Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U.S. Preventive Services Task Force recommendation statement. Annals of Internal Medicine, Volume 160(4), 271-282. Pal, T., Cragun, D., Lewis, C., Doty, A., Rodriguez, M., Radford, C., . . . Vadaparampil, S.T. (2013). A statewide survey of practitioners to assess knowledge and clinical practices regarding hereditary breast and ovarian cancer. Genetic Testing and Molecular Biomarkers, 17(5), 3670375.

Plon, S.E., Cooper, H.P., Parks, B., Dhar, S.U., Kelly, P.A., Weinberg, A.D.... Hilsenbeck, S. (2011). Genetic testing and cancer risk management recommendations by physicians for at-risk relatives. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 13(2), 148-154.

Ponder, B.A.J., Day, N.E., Easton, D.F., Pharoah, P.D.P., et al. (2000). Prevalence and penetrance of BRCA1 and BRCA2 mutations in a population-based series of breast cancer cases. British Journal of Cancer 83(10), 1301—1308. doi:10.1054/bjoc.2000.1407.

Provenzale, D., Gupta, S., Ahnen, D.J., Bray, T.H., Chung, D.C., . . . Ogba, N. (2018). NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines ®). (2018, Version 1.2018-July 12, 2018). Genetic/ familial high-risk assessment: Colorectal. Retrieved from https://www.nccn.org/professionals/physician_gls/pdf/genetics_colon.pdf.

Robinson, L.S., Hendrix, A., Xie, X.J., Yan, J., Pirzadeh-Miller, S., Pritzlaff, M., Read, P., Pass, S., Euhus, D., & Ross, T. (2015). Prediction of cancer prevention: From mammogram screening to identification of BRCA1/2 mutation carriers in underserved populations. EbioMedicine, Vol. 2, Issue 11, 1827-1833. doi:10.1016/j.ebiom.2015.10.022.

Whittemore, A.S., Gong, G., John, E.M, et. al: Prevalence of BRCA1 mutation carriers among U.S. non=Hispanic whites. (2004). CancerEpidemiology, Biomarkers & Prevention 13(12), 2078-2083.

Win, A.K., Jenkins, M.A., Dowty, J.G., Antoniou, A.C., Lee, A., Giles, G.G., Buchanan, D.D., et. al. (2017). Prevalence and penetrance of major genes and polygenes for colorectal cancer. Cancer Epidemiology, Biomarkers & Prevention 26(3), 404-412. doi:10.1158/1055-9965.EPI-16-0693.

References

Questions?

UTSW Hereditary Cancer websites• Physician:

http://www.utswmedicine.org/health-pros/hereditary-cancer/

• Patient: http://www.utswmedicine.org/cancer/programs/cancer-genetics/

Hereditary CRC website: http://www.cancerinthefamily.com

[email protected]

Special thanks to contributors: Sayoni Lahiri, MS, GCSara Pirzadeh-Miller, MS, GC

https://www.nccn.org/professionals/physician_gls/pdf/genetics_screening.pdf

https://www.nccn.org/professionals/default.aspx

https://www.nccn.org/professionals/physician_gls/pdf/genetics_colon.pdf

http://www.utswmedicine.org/health-pros/hereditary-cancer/

http://www.utswmedicine.org/cancer/programs/cancer-genetics/

http://www.cancerinthefamily.com/

mailto:[email protected]

improving patient standards and compliance with nurse

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