Kentucky LEADS Collaborative Survivorship Care (SC)

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Kentucky Collaborative Survivorship Care (SC) Jamie L. Studts, PhD Associate Professor Dept. of Behavioral Science University of Kentucky Assistant Director Cancer PrevenAon and Control Markey Cancer Center jamie.studts@uky.edu

Lung Cancer Distress & Symptom Burden Lung cancer is considered the cancer diagnosis associated with the greatest amount of distress Lung cancer is commonly treated with multiple modalities, creating substantial symptom burden Lung cancer itself causes significant symptom burden, partially due to the involvement of respiratory function

Survivorship Care (SC) Aims and Hypotheses We hypothesize that the Lung Cancer SC Intervention and Training program will improve quality of life, better symptom control, increase tobacco treatment, and reduce distress among lung cancer survivors; improve quality of life, increase tobacco treatment, and reduce distress among family members/caregivers of individuals diagnosed with lung cancer; increase self-efficacy and skills in providing lung cancer survivorship care among program providers (e.g., nurses, social workers, navigators, psychologists, etc.).

Survivorship Care (SC) Team Jamie L. Studts (PI) Michael Andrykowski (Co-I) Robin Vanderpool (Co-I) Jessica Burris (Co-I) Cynthia Robinson (Co-I) Susanne Arnold (Co-I) Courtney Blair (PC) Amy Christian (RC) Allyson Yates (Project Manager) Tara Schapmire (Co-I) Barbara Head (Co-I) Maureen Rigney (Co-I) Angela Criswell (KFC) Consultants Paul Jacobsen, PhD (Moffitt) Jamie Ostroff, PhD (Memorial) Community Advisory Board Nancy Alvey, LuCa Survivor Judy Kasey-Houlette Vicki Blevins-Booth David Gross Jessica Lehman, PhD

Survivorship Care (SC) Intervention Guiding Principles Designed for Dissemination Acceptable Feasible Survivor Acceptable Site Feasible Intervention Delivery In-person, telephone, telemedicine, other Interventionists Any survivorship care specialist identified by collaborating community site/cancer care program Targeted and Tailored Content Lung cancer targeted Patient/Caregiver tailored (survivor/provider) Intervention determined by baseline assessment of survivorship concerns

Survivorship Care (SC) Survivor and Caregiver Intervention Building a novel psychosocial survivorship care intervention for individuals diagnosed with lung cancer and their caregivers

SC Survivor Modules 1) Lung Cancer Basics 2) Navigating the Healthcare System 3) Coping with Pain and Addiction Concerns 4) Coping with Fatigue 5) Coping with Sleep Problems 6) Coping with Distress 7) Coping with Shortness of Breath 8) Social Support 9) Values and Decision Making 10) Healthy Living 11) Tobacco Use 12) Caregiver Concerns and Self-Care

Intervention Principles Partnering/Supportive Counseling Style Rogerian/Motivational Interviewing Coping with/addressing stigma concerns Shared Decision Making and a Patient- Centered Approach Adaptable content that follows from assessment and patient preferences Effort to maximize survivor acceptability of the intervention

Survivorship Care (SC) Specialist/Interventionist Training Online CE IntervenAon Training In- Person Module Training Training Manual Learning Community Building a companion training program to support Kentucky SC Specialists in their work as lung cancer survivorship care interventionists

Survivorship Care (SC) Implementation Sites Ashland Owensboro Madisonville Louisville (2) Elizabethtown Danville Lexington Morehead Hazard 1. Baptist Health, Madisonville 2. Brown Cancer Center, Louisville 3. Ephraim McDowell Commonwealth Cancer Center, Danville 4. Hardin Memorial Hospital and Cancer Center, Elizabethtown 5. Hazard Appalachian Regional Healthcare, Hazard 6. King s Daughters Medical Center, Ashland 7. Markey Cancer Center, Lexington 8. Norton Cancer Institute, Louisville 9. Owensboro Health, Owensboro 10. St. Claire Regional Medical Center, Morehead

Survivorship Care Eligibility & Accrual Process Inclusion Criteria Anyone over age 18 with a diagnosis of lung cancer Ability to communicate verbally in English Exclusion Criteria Serious mental illness that would preclude participation Substance abuse that would preclude participation Accrual Process Within the standard site process Preferred: Oncologist recommendation à research coordinator and interventionist contact

Survivorship Care (SC) Research Agenda Evaluate the impact of the training program on survivorship care specialists, focusing on lung cancer survivorship knowledge, self-efficacy and practices pertaining to providing support to lung cancer survivors and caregivers Evaluate the impact of the intervention on lung cancer survivors and caregivers, primarily focusing on quality of life, well-being, and symptom management

Intervention Research Plan (N=300) Survivors/Caregivers (N=30 per site) Quality of Life (multiple domains to match intervention) Pre, Post, 3-month follow-up Key Informant Interviews with subset (2 per site) IntervenAon Follow- Up Clinical & Research Clinical Only Clinical & Research Research Only

Thank You! Survivorship Care

Survivorship Care Team Contact Information Jamie L. Studts (PI) jamie.studts@uky.edu (859) 323-0895 (office) (859) 797-7908 (mobile) Amy Christian (Research Coordinator) amy.christian@uky.edu (859) 218-2482 Courtney Blair (Program Coordinator) courtney.shacklette@uky.edu (859) 218-6638 Allyson Yates (Overall Project Manager) a.yates@uky.edu (859) 218-3934

Dedicated to reducing the burden of lung cancer in Kentucky and beyond through development, evaluation, and dissemination of novel, communitybased interventions to promote provider education, survivorship care, and prevention and early detection regarding lung cancer. Connect with us: www.kentuckyleads.org Kentucky Collaborative @Kentucky Kentucky Jamie L. Studts, PhD (Principal Investigator) jamie.studts@uky.edu Allyson Yates (Program Director) a.yates@uky.edu