The Nueva Vida Intervention for Latina Breast Cancer Survivors and their Caregivers: An Academic-Community Collaboration

Transcription

1 The Nueva Vida Intervention for Latina Breast Cancer Survivors and their Caregivers: An Academic-Community Collaboration Kristi D. Graves, Ph.D. February 5, 2018 Presentation for the Community-Engaged Research (CEnR) Symposium: Building CEnR Networks to Eliminate Disparities in Cancer and Cardiovascular Disease Contract Supported by: PCORI AD

2 Outline 1. Community-Academic Partnership: Nueva Vida Intervention 2. Engagement through Communities: Short and Long-term Benefits 3. Lessons Learned to Maximize Community-Academic Partnerships

3 Evolution of Engaged Partnership Community-Based Organization: Nueva Vida Successful program to address needs and improve quality of life of Latina Survivors and Caregivers Trusted relationship with Latino families Academic Partner: Georgetown Successful prior research with Latina breast cancer survivors Significant interest in intervention research and engaging patients and families

4 Collaborative Team: Community Built upon existing relationships SHARE (NY, NY) Gilda s Club New York City (NY) Latinas Contra Cancer (CA) Recognize community expertise and input throughout process Team, Design & Implementation Engagement & Dissemination

5 Structure of an Academic-Community Collaborative Team

6 Proposal and Design Logistics Patient and Community partners involved in: Formulating research questions & study design Identifying eligibility criteria of participants Making decisions about comparators and interventionists Participating in and monitoring conduct of project Helping to plan dissemination of results Establishing reciprocal relationships, co-learning, trust, transparency Outcomes Outcomes of common interest to patient partners, community organizations and research team

7 Nueva Vida Intervention Comparison (randomized controlled trial) between Nueva Vida Intervention Usual Services Focus to improve quality of life among Latina breast cancer survivors as well as their caregivers

8 Study Aims

9 Nueva Vida Intervention: Format Survivor Group Caregiver Group Gather together / Discuss topics

10 Nueva Vida Intervention: Topics Impact of Cancer on Family 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

11 Implementation: Research Democracy 8 talleres (workshops) 2 hour group sessions 2 per month 5 core topics (*) Team Consistent across all groups 3 topics: Research Democracy Topics most relevant to each specific group Caregiver roles and relationships 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

12 Engagement & Dissemination: Equal Input Engagement Strategies: Phone calls, scheduling Birthday cards, postcards Twice monthly site check-ins Monthly team phone meetings Annual in person team meetings Think aloud technique Polls / Surveys Outreach & Dissemination: Community Meetings Newsletters Webinars Post-Intervention Parties 12

13 Recruitment, Enrollment & Retention Overall: 222 complete dyads/272 dyads=82% Retention T1 (immediate post; n = 100 dyads) Registered to T1: 219/375 = 58% Randomized to T1: 219/272 = 80.5% Retention T2 (6-month follow-up; n = 103 dyads) Registered to T2: 222/375 = 59% Randomized to T2: 222/272 = 82%

14 Intervention Attendance (70 dyads) 12.9% (n=9) never attended 15.7% (n=11) attended 1-4 sessions 71.4% (n=50) attended 5+ of 8 sessions

15 Results: Participant Characteristics

16 Participant Characteristics N = 136 dyads randomized* 1 withdrew post-randomization Intervention (n=70) Usual Care (n=66) Latina Survivors (n = 135) Caregivers (n = 135) 55 males 41% 80 females 59% % Spanish Survey 93% 82% % Employed Full-Time at BL 15% 50% % Less than HS Degree 43% 31%

17 Countries of Origin Latina Survivors Caregivers Bolivia 5.8% Bolivia 3.6% Columbia 4.4% Columbia 5.5% Chile 2.9% Chile 3.6% Ecuador 1.5% Ecuador 3.6% El Salvador 7.3% El Salvador 7.3% Guatemala 7.3% Guatemala 7.3% Mexico 23.2% Mexico 20.0% Peru 10.1% Peru 11.0% Puerto Rico 4.5% Puerto Rico 3.6% Dominican Republic 14.5% Dominican Republic 11.0% United States 7.3% United States 18.2% Other 10.1% Other 5.5%

18 Countries of Origin Latina Survivors Caregivers Bolivia 5.8% Bolivia 3.6% Colombia 4.4% Colombia 5.5% Chile 2.9% Chile 3.6% Ecuador 1.5% Ecuador 3.6% El Salvador 7.3% El Salvador 7.3% Guatemala 7.3% Guatemala 7.3% Mexico 23.2% Mexico 20.0% Peru 10.1% Peru 11.0% Puerto Rico 4.5% Puerto Rico 3.6% Dominican Republic 14.5% Dominican Republic 11.0% United States 7.3% United States 18.2% Other 10.1% Other 5.5%

19 Outcome Measures: PROMIS Patient Reported Outcomes Measurement Information System PROMIS Short-Forms Physical Function Satisfaction with Social Roles Anxiety Depression Fatigue Scores are standardized against the US population Mean = 50 Standard Deviation = 10

20 Baseline PROMIS Scores Survivors Caregivers 40 LOWER = BETTER

21 Results: Anxiety Nueva Vida Intervention Survivors Usual Care Survivors Nueva Vida Intervention Caregivers Usual Care Caregivers 46 Baseline Post-Intervention 6-Month Follow-Up

22 Results: Depression Baseline Post-Intervention 6-Month Follow Up Nueva Vida Intervention Survivors Usual Care Survivors Nueva Vida Intervention Caregivers Usual Care Caregivers

23 Results: Fatigue Nueva Vida Intervention Survivors Usual Care Survivors Baseline Post-Intervention 6-Month Follow Up Nueva Vida Intervention Caregivers Usual Care Caregivers

24 Results: Physical Functioning Nueva Vida Intervention Survivors Usual Care Survivors Baseline Post-Intervention 6-Month Follow-Up Nueva Vida Intervention Caregivers Usual Care Caregivers

25 Results: Social Functioning Baseline Post-Intervention 6-Month Follow Up Nueva Vida Intervention Survivors Usual Care Survivors Nueva Vida Intervention Caregivers Usual Care Caregivers

26 Changes within Study Groups NV Survivors UC Survivors NV Caregivers UC Caregivers -6

27 Benefits of Partnerships Short-term: Greater relevance More likely to address true needs Increased awareness of a community s: Strengths / Expertise Services / Resources Greater proposal appeal Long-term: Increased capacity Greater likelihood for dissemination / impact Expanded (and strengthened) collaborative relationships

28 Challenges to Partnerships Implementation subtleties / less internal validity? Greater external validity / real-world research Rich diversity in patients and caregivers Ready to listen carefully and share decisions? Recognize greater salience to patients, family & community Provide infrastructure support and training as needed Plan on additional effort that may be needed for reaching some participants (e.g., caregivers)

29 Lessons Learned: Researcher Recognize value of community-based organizations in generating, partnering and sustaining research. Be receptive to what is already being done by patients or in the community. Keep needs of patients and families as a priority. Use a democratic approach to decisionmaking. Set a culture of open communication.

30 Lessons Learned: Researcher Spend time educating team members about the study process. Offer training that meets partners needs. Be prepared for a potentially higher administrative burden. Be flexible.

31 Georgetown University: Roxanne Jensen Jeanne Mandelblatt Vanessa Sheppard Stacey Kaltman George Luta Christina Rush Adriana Serrano Tania Lobo Neha Rajpal Maxie Blasini Charlene Kuo Nueva Vida: Astrid Jimenez (PI) Claudia Campos Maria Eugenia del Villar Alma Hamar Margaret Darling Ana Quijada SHARE: Ivis Febus Sampayo (PI) Jennie Santiago Olympia Cepado-Coto Gilda s Club NYC: Migdalia Torres (PI) Carolina Hoires Awilda Torres Lily Safani Latinas Contra Cancer: Ysabel Duron (PI) Angela Chiprez 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

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33 Thank you!

34 Questions?

35 Additional Slides

36 Additional Results: Financial Concerns How difficult is it for you/your family to meet monthly payments on bills? (Post) % of Survivors extremely/ very somewhat not at all / not very % of Caregivers extremely/ very somewhat not at all / not very How often do you worry about being able to meet normal monthly living expenses? Survivors 6 Months Caregivers 6 Months Worry All the Time 34% 21% Sometimes Worry 32% 34% Rarely/Never Worry 34% 45%