Wisdom and Wit: Updates From the ONS Distinguished Nurse Researchers

Ruth McCorkle, PhD, RN, FAAN Key Session Takeaways Florence Wald Professor of Nursing 1. Advanced practice nurses make a difference in outcomes Yale University of patients with multiple across the disease tra- [email protected] jectory and their family caregivers. 2. It takes clinical partnerships among nurse researchers Betty Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN and other professional providers with patients and fami- Professor lies to develop an effective nursing research program. City of Hope 3. Teams who study vulnerable patients with complex [email protected] problems need structured opportunities to share their work and support to continue. Frances Lewis, RN, MN, PhD, FAAN 4. Nursing research within a research program does not Univ Wash Professorship of Nursing Leadership involve simply a linear or additive process; it involves multicomponent and concurrent studies. [email protected] 5. The Model of the Problem is distinct from the Model of the Intervention. Christine Miaskowski, PhD, RN, FAAN 6. An informed research program is not only data-based; it Professor is linked tightly with an evolving theoretical framework. University of California, San Francisco [email protected]

Donna Berry, PhD, RN, AOCN®, FAAN Director DFCI [email protected]

Christine Miaskowski, PhD, RN, FAAN, did not provide session slides. Please contact her for more information.

Oncology Nursing Society 42nd Annual Congress Research May 4–7, 2017 • Denver, CO 1 ONS 42nd Annual Congress

Wisdom and Wit: Updates from the ONS Distinguished Nurse Researchers Ruth McCorkle, PhD, RN, FAAN Betty Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN Frances Lewis, RN, MN, PhD, FAAN Christine Miaskowski, PhD, RN, FAAN Donna Berry, PhD, RN, AOCN, FAAN

Disclosures

• Ruth McCorkle, PhD, RN, FAAN, has nothing to disclose. • Betty Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN, has nothing to disclose. • Frances Lewis, RN, MN, PhD, FAAN, has nothing to disclose. • Christine Miaskowski, PhD, RN, FAAN, has nothing to disclose. • Donna Berry, PhD, RN, AOCN, FAAN, has nothing to disclose.

My Objectives for You

• Sit back, relax and enjoy the flight • Appreciate the long term effects of decades‐ long programs of research • Honor the shoulders on which many of us stand

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1994

1996

Updates from ONS Distinguished Nurse Researchers

4 May 2017 1998

2000

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Building the Evidence of the Impact of the Advanced Practice Nurse on Patient and Caregiver Outcomes: A Forty Year Journey

Ruth McCorkle, PhD, FAAN Florence S. Wald Professor of Nursing Yale University School of Nursing

Objectives

• To summarize the trajectory of building the evidence for the advanced practice nurse intervention on patient and caregiver outcomes • To describe the operationalization of the advanced practice intervention within the Chronic Care Model • To discuss lessons learned • To make recommendations for career development of future life-long researchers

Trajectory of Science: Pre-Award 1994

1975 Dissertation: Human Attachments 1976 Intramural Grant-UW-Needs Assessment 1977 Oncology Transition Services- training grant 1978 R01 Instrument Development – NCI 1983 R01 Evaluation of CA Management – 3 group design 1986 Supplement Bereavement 1987 R01 RFA - Home Care: patients and caregivers, ethnic groups, age 1992 R01 Quality of Life Outcomes in Elderly – patients and caregivers

•

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Trajectory of Science: Post-Award 1994

1998 ACS Quality of Life Outcomes- Patients & Spouses- Prostate 2003 R01 Quality of Life Outcomes- Ovarian Cancer 2009 R01 Outcomes with Patients Newly Diagnosed with Advanced Cancer – Translational Study 2011-present Formal Appointment at Smilow Cancer Center – Resource to APNs and PAs

Series of Intervention Oncology APN Studies Outcomes • Forestalled or decreased symptoms • Improved mental health outcomes • Improved functional abilities • Decreased uncertainty • Extended survival • Decreased caregiver burden • Improved patient-family communication • Decreased re-hospitalizations, ER use • Coordinated resources

APN Intervention

• Monitoring and Managing Symptoms • Providing Direct Care • Executing Complex Care Procedures • Teaching Patients and Family Caregivers • Coordinating Care • Counseling Patients and Families • Promoting Use of Resources • Collaborating with their Providers

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Lessons Learned

• Establish Research Team and Forge Lasting Partnerships with Clinicians • Establish a Routine Schedule of Meetings: Administrative, Intervention, Outcomes, Team • Establish Mechanisms to Support Staff dealing with Vulnerable Populations • Ensure Infrastructure to maintain Research Enterprise • Establish Formal Relationship with Clinical Site • Develop Lasting Relationships and have Fun

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Research Can Be Rewarding & Fun

• Identify the role you want for yourself • Persistence pays off • Celebrate all successes • Develop a culture of scholarship - a consistent and steady effort • Nurture your sense of humor • Find a balance with your personal life and your research

Contact Information

[email protected]

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References

• McCorkle R, Jeon S, Ercolano E, Lazenby M, Reid A, Davies M, Viveiros D, Gettinger S.(2015). An Advanced Practice Nurse Coordinated Multidisciplinary Intervention for Patients with Late-Stage Cancer: A Cluster Randomized Trial. J Palliat Med. 2015 Nov; 18(11):962-9. • McCorkle, R. (2011). A purposeful career path to make a difference in cancer care. Cancer Nursing. 4(4):335-9. • McCorkle, R. (2011). Interdisciplinary collaboration in the pursuit of science to improve psychosocial cancer care. Psychooncology. 2011 May;20(5):538-43. doi: 10.1002/pon.1766. • McCorkle, R. (2009). Nurses making a difference: taking personal responsibility for using research findings. Cancer Nursing 32(4):257-8. • McCorkle, R. (2006). A program of research on patient and family caregiver outcomes: three phases of evolution. Oncol Nurs Forum 33(1):25-31.

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Wisdom and Wit: Updates from the ONS Distinguished Nurse Researchers

Betty Ferrell, RN, PhD, MA FAAN, FPCN, CHPN Professor and Director Nursing Research and Education City of Hope National Medical Center

• 1977 BSN Nursing • 1980 MSN Nursing • 1984 PhD Nursing • 2007 MA Theology/Ethics/Culture

Research Focus

• 1984 –present Management at Home • 1989 –present QOL Studies • 1996‐ present , Symptoms, Family Caregiving

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Education / Training

• Several R25 funded projects related to pain, palliative care, survivorship and family caregiving • ELNEC Project (2000‐present) 21,000 Trainers; all 50 states, 91 countries, >650,000 trained

Interventions to Reduce Cancer‐Related Morbidity/Mortality & Improve QOL (Ferrell) Collaborators: Hurria (CCPS), Sun (CCPS), Koczywas (DCT), Reckamp (DCT), Cristea (DCT), Raz (MCBC) National Collaborators: Kaiser Permanente and Johns Hopkins Interdisciplinary Palliative Care Intervention

IMPACT Patients with • Patients receiving the intervention have N=491 patients; 366 family caregivers less distress, better QOL, and fewer symptoms • The intervention is being: − disseminated in 3 Kaiser (R01; Ferrell, PI) − tested in patients on Phase 1 clinical trials (R01; Ferrell, PI) • Cited as key evidence for the ASCO Palliative Care Guidelines (to be released in fall 2016) • Pilot funding  P01  R01 (x2) *Lower scores = less distress Funding: Publications: P01CA136396 Ferrell et al. JPSM 2015 Koczywas et al. Ann Surg Oncol 2013 R01CA177562 Sun et al. Cancer 2015 Grant et al. Oncol Nurs Forum 2013 R01NR015341 Sun et al. Psychooncology 2015 Borneman et al. Int J Palliat Nurs 2014

Lessons Learned

• Be focused • Be Flexible

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Lessons Learned

• Research as team science • Value pilot opportunities • Keep focused on the patient • Meet your obligations

Recommendations for New Investigators

• Find your passion • Prepare for a long journey • Seek balance for a sustained career

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Cooking on All Burners of the Stove: Describing Rocks and Modeling and Changing a River

Wisdom & Wit ONS Distinguished Nurse Researchers ONS Congress, Denver May 5, 2017

Frances Marcus Lewis, RN, MN, PhD, FAAN

A sustainable research program involves cooking on all burners of the stove. Pilot/Feasibility Studies Randomized Clinical Trials

Descriptive Methods Studies Development Studies

Model Testing Studies

Impact of Breast Cancer on Spouse Caregivers and Household Functioning

+ Depressed Mood - - Length - Diagnosis + Family + Coping - + + + Parent- - Family + Child + Demands Function of Illness Relation Child - + - + - Function + - - + - SES - - Marital + Adjust Social = M/YC J Behav Support = P/YC } Med ‘93 Child - = M/OC } Fam Rel Gender = P/OC ‘96

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Illness pressures, Depressed Mood, & Marital Within & Across Time n = 111

*p < .05 Length Lewis & Hammond, 1992 **p < .01 Diagnosis ***p < .001 .05

Demands .63*** Demands .63*** Demands of Illness of Illness of Illness .24* .14 .30***

Depressed .34** Depressed .42** Depressed Mood Mood Mood -.25** -.13* -.16**

Marital .76*** Marital .78*** Marital Adjust Adjust Adjust .51*** .29* .10

Family .55*** Family .50*** Family Coping Coping Coping .36*** .30*** .23*** .42*** .23* .03 Family .43***Family .53*** Family Function Function Function

TIME 1 TIME 2 TIME 3

Distress in Children

“Well, at times I was really scared. And I remember sometimes crying and like…sometimes, she was really sick…And I didn’t want my mom to pass away.”

f‐8yr/11yr

Distress in Spouse Caregiver

Feeling nailed by the cancer: feeling helpless to save their wife; lacking sleep because of supporting her; being overwhelmed with her emotions and how to help her Zahlis & Lewis, 2010

“The emotions are the things that I seem to be unprepared for…and I want to be sensitive to those emotions and I don’t want to react negatively…Like when she gets hostile in words…In fact, she’s saying, ‘I am feeling bad, listen to me.’ Instead, I misinterpret that and fire something back at her…”

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Marital Communication Changes

“We fight more, argue more. Any little thing whatever, upsets her, which is just about anything.”

47% of couples have poor marital adjustment with local recurrent breast cancer Lewis & Deal, 1995

66% of couples want to work on ways to better deal with tension in their marriage or be together as a couple with breast cancer Shands et al., 2006

Enhancing Connections Program

Frances Marcus Lewis, Principal Investigator RO1 CA78 424 Co-PIs: Patti Brandt, Barbara B. Cochrane Site Co-PIs: Marcia Grant, Joan Haase, Arlene Houldin, Janice-Post-White

Extensions of EC tested or being tested:

EC-T Telephone delivery EC-A EC-G with Cancer Support Community EC-H with NMSU EC-PC

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Helping Her Heal Program

R01 CA 11 4561

5, 1‐hour interactional intervention sessions at 2‐week intervals

Fully scripted intervention sessions and printed materials

Detailed in‐session and at‐home skill building and efficacy enhancing exercises

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