A Program to Address the Psychosocial Impact of Cancer Melissa Wright, LMSW, OSW-C Program Director

Gilda’s Club Quad Cities is an affiliate of the Cancer Support Community Our mission is to ensure that all people impacted by cancer are: Empowered by Knowledge Strengthened by Action Sustained by Community

GUIDELINES In 2008, the Institute of Medicine released a consensus report “ Cancer Care for the Whole Patient,” addressing the non-treatment needs of patients 1 Consensus-based guidelines developed by the Distress Management Panel of the NCCN recommend screening all patients regularly for psychosocial distress 2 CDC recently presented a National Action Plan for Cancer Survivorship 3 GUIDELINES In 2008, the Institute of Medicine released a consensus report “ Cancer Care for the Whole Patient,” addressing the non-treatment needs of patients 1 Consensus-based guidelines developed by the Distress Management Panel of the NCCN recommend screening all patients regularly for psychosocial distress 2 CDC recently presented a National Action Plan for Cancer Survivorship 3 LEGISLATION Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 requires that each grantee agrees to …facilitate the care of individuals, including by: Acting as contacts Facilitating the involvement of community organizations Coordinating with health insurance programs Notifying individuals of clinical trials Helping patients …to ensure prompt diagnostic and treatment resolution Conducting ongoing outreach to health disparity populations LEGISLATION Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 requires that each grantee agrees to …facilitate the care of individuals, including by: Acting as contacts Facilitating the involvement of community organizations Coordinating with health insurance programs Notifying individuals of clinical trials Helping patients …to ensure prompt diagnostic and treatment resolution Conducting ongoing outreach to health disparity populations Psychosocial Support: A Documented Need

The Need Cancer diagnosis creates unique psychosocial needs Overcoming psychosocial challenge leads to therapy adherence, side effect awareness and physical persistence Psychosocial screening improves the care process and potential outcome Psychosocial support offers a gateway to improved patient well- being and clinical outcomes. source “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs - Institute of Medicine." IOM Home - Institute of Medicine. Web. 31 Jan

Screening Addresses Seven Areas of Need Cancer Treatment Information Emotions Related to Cancer Managing the Illness Changing Behaviors Material and Logistical Resources Disruptions in Work, School, and Family Financial Advice and Assistance Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs - Institute of Medicine." IOM Home - Institute of Medicine. Web. 31 Jan

Psychosocial Distress Screening Program Design Web-based, validated 25 item distress screening program for the community setting Data is protected and system is HIPAA compliant Patient empowered to self-identify both concerns and how to receive support Real-time summary reports to both patient and clinical team Referral to appropriate community resources, if identified Capacity for customization and EHR interface Use Community Cancer Centers Private Oncology Practices Cancer Support Community Affiliates Design Web-based, validated 25 item distress screening program for the community setting Data is protected and system is HIPAA compliant Patient empowered to self-identify both concerns and how to receive support Real-time summary reports to both patient and clinical team Referral to appropriate community resources, if identified Capacity for customization and EHR interface Use Community Cancer Centers Private Oncology Practices Cancer Support Community Affiliates

CSC Screener Sample Question 7

8 CSC Screener Sample Question

CSC Screener Sample Question 9

CSC Screener Sample Question 10

Excerpt from CSS Patient Personal Support Care Plan When a patient answers specific CancerSupportSource questions, there is pre-defined information that is generated back to them in form of the Support Care Plan. When a patient answers specific CancerSupportSource questions, there is pre-defined information that is generated back to them in form of the Support Care Plan.

Excerpt from CSS Clinician Summary Report-Part 1 When a patient answers positively to concerns about taking one’s life, there is an that is automatically sent to a pre-defined address. The patient will then be contacted by a member of the clinical team.

Excerpt from CSS Clinician Summary Report-Part 2 This portion of the report displays ‘Concern, Answer and Action’ as requested by patient for easy review by clinical staff and medical team.

Patient response triggers referral to specialists

Specialists can track referral resolution

CSS Pilot Program CSS Pilot Objectives: Identify distress-related problems cancer patients are experiencing Link patients (members) to resources available in the community including print materials, online resources, GCQC/CSC programs, and other appropriate referrals Conduct evaluation of the screening program To develop best practices for screening in the community CSS Pilot Objectives: Identify distress-related problems cancer patients are experiencing Link patients (members) to resources available in the community including print materials, online resources, GCQC/CSC programs, and other appropriate referrals Conduct evaluation of the screening program To develop best practices for screening in the community

CSS Pilot Program Lessons learned thus far: It is feasible to screen and members find it helpful The technology is user-friendly Provides members/patients with vital information Provides objective tools to plan/deliver programs Validates individual needs while deepening their connection in the Community Generally see distress scores decrease between baseline and 30 day re-screen Lessons learned thus far: It is feasible to screen and members find it helpful The technology is user-friendly Provides members/patients with vital information Provides objective tools to plan/deliver programs Validates individual needs while deepening their connection in the Community Generally see distress scores decrease between baseline and 30 day re-screen

Next Steps to Implementation Timeline Comprehensive Pilot Project in Davenport, Iowa and Atlanta, Georgia, currently underway concluding Fall 2012 Validated CSS version 2.0 available for implementation September-October 2012 Costs Annual license fee including support and maintenance One-time set-up cost One-time customization cost (to include EHR or other system interface, if desired) Timeline Comprehensive Pilot Project in Davenport, Iowa and Atlanta, Georgia, currently underway concluding Fall 2012 Validated CSS version 2.0 available for implementation September-October 2012 Costs Annual license fee including support and maintenance One-time set-up cost One-time customization cost (to include EHR or other system interface, if desired)

For more information For information on CancerSupportSource™ contact: Mitch Golant, PhD, Senior VP Research and Training Cancer Support Community Vicki Kennedy, LCSW Vice President, Program Development & Delivery For information on CancerSupportSource™ contact: Mitch Golant, PhD, Senior VP Research and Training Cancer Support Community Vicki Kennedy, LCSW Vice President, Program Development & Delivery

About Cancer Support Community The largest psychosocial cancer organization, Cancer Support Community (CSC) provides personalized, evidence-based social and emotional support to any person impacted by cancer The largest psychosocial cancer organization, Cancer Support Community (CSC) provides personalized, evidence-based social and emotional support to any person impacted by cancer Headquarter Offices: Washington DC New York City Philadelphia Network: 44 US-based Affiliates 4 International Affiliates 9 Affiliates in development 4 International Partners International Reach The Living Room Online Community Group Loop National Call Center Mobile App Internet Radio Broadcast Recognized Frankly Speaking About Cancer Series of Educational Materials

Questions and Discussion

1.“Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs - Institute of Medicine." IOM Home - Institute of Medicine. Web. 31 Jan National Comprehensive Cancer Network. NCCN practice guidelines for the management of psychosocial distress. Oncology (Williston Park) 1999;13:113– "CDC - Cancer Survivorship - The National Action Plan." Centers for Disease Control and Prevention. Web. 31 Jan Notes and Citations