Nueva Vida Intervention Kristi D. Graves Georgetown University - - PowerPoint PPT Presentation

The 2015 PCORI Annual Meeting: Progress in Building a Patient-Centered Comparative Clinical Effectiveness Research Community

Nueva Vida Intervention

Kristi D. Graves

Georgetown University

Maria Gloria Elliott

Nueva Vida, Inc. October 6-8, 2015

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Kristi Graves and Maria Gloria Elliott

Have nothing to disclose.

Nueva Vida Intervention

• Randomized Controlled Trial of a

psychosocial intervention to improve quality of life outcomes

• Latina Breast Cancer Survivors and

Caregivers (partner, family, friend)

• Randomization to Nueva Vida

Intervention or Usual Care Progress to Date

• 93 Survivor / Caregiver dyads enrolled (Target: 125)
• 29 dyads completed Post-Intervention
• Round 2 in progress; Round 3 Late Fall 2015

Rush et al. (2014), Quality of Life Research

Real-World Intervention Development

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Impact of Cancer on Family (Introduction) Stress Management* Improving Communication* Spirituality and Cancer* Balancing Physical and Emotional Needs* Anger Management Intimacy after Cancer Trauma and Cancer Role Changes Understanding Distress Myths and Cancer Including Others in Helping Caregivers Putting Our Lives in Order

• 8 “talleres” (workshops)

– 2 per month – 5 core topics – 3 topics: “Research Democracy”

• Survivors and caregivers

meet in separate rooms

• All gather together at end

to discuss

• Groups share a meal at

beginning or end of the session

Patients and Caregivers

[The workshops] give you a new vision and they help you understand the problem so you can face it with a more positive perspective. - Caregiver Yes, [I would recommend this program to others] because you benefit

• emotionally. Coming together with people who are going through the same

thing lifts you and gives you motivation. - Caregiver There was a little of everything and even more, because they touch upon deep topics to help us change and accept our condition - Survivor Of course [I would recommend this program to others], because it helps strengthen relationships with family members and friends. - Survivor

Proposal & Implementation

• Patient and Community partners involved:

– PCORI Rubric

• Formulating research questions & study design
• Participating in and monitoring conduct of project
• Helping to plan dissemination of results
• Reciprocal relationships, co-learning, trust, transparency
• Engagement: roles, contributions

– Patients, Caregivers, Clinicians, Researchers – Seeking input at different stages of the project

Engagement and Dissemination

• Engagement Strategies:

– Twice monthly site check-ins – Monthly phone meetings with entire team – Annual in person team meetings – “Think aloud” technique – Polls / Surveys

• Dissemination to participants and others:

– Community Meetings – Newsletters – Webinars – Post-Intervention Parties

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Lessons Learned & Taught: Patient

• Feel privileged to test our intervention on a broad scale
• Appreciate time and attention needed for research
• Observe how research is an essential tool to bring evidence-

based practice to improve quality of care

• Recognize importance of connections with all team members

• Learn how to bring topics, ideas to the team
• Listen to not only the words, but the context to understand a

person’s story.

– Be willing to listen, even if something seems ‘minute.’ – Create a community so that all perspectives are elicited and respected. – Share a common language as a first step. – Build bridges to embrace cultural and “acculturation” differences as the next next steps.

• Maintain and support flexibility for implementation,

adaptations may improve the process.

Lessons Learned & Taught: Patient

• Interventionists set the tone:

– Inclusiveness of all belief systems – Acceptance (e.g., an open mind!)

• Data gleaned from research is useful – but equally

important is that quality care is provided in an open, respectful, and inclusive manner

• Use results to help underserved groups have a bigger voice

to better address disparities

Lessons Learned & Taught: Patient

Thank you! Kristi Graves: Kristi.Graves@georgetown.edu

• M. Gloria Elliott: mgromelliott@gmail.com

Thank you!

GU: Roxanne Jensen Jeanne Mandelblatt Vanessa Sheppard Stacey Kaltman George Luta Christina Rush Juliana Munoz Tania Lobo Nueva Vida: Claudia Campos (PI) Rachel Hanisch Maria Eugenia del Villar Alma Hamar Ana Quijada Gilda’s Club NYC: Migdalia Torres (PI) Carolina Hoires Awilda Torres SHARE: Ivis Febus Sampayo (PI) Jennie Santiago Olympia Cepado-Coto Latinas Contra Cancer: Ysabel Duron (PI) Angela Chiprez Yvette DeLaTorre Teresa Ipong Garcia Martha Brewer Claudia Colindres Consultants: Lina Jandorf Maria Gloria Elliott Barry Jacobs Anna Napoles Advisory Board Members: Roberto Londono Robert Warren Regina Hampton Monique Perret-Gentil Wanda Lucas Other Partners: Lombardi Breast Cancer Patient Advocacy Committee Data Safety Monitoring: Alfiee Breland-Nobel Filipa Lynce Georgeen Newland Florencia Gonzalez