Oncology Roundtable Distress Screening Playbook Deirdre Fuller Consultant fullerd@ Lindsay Conway Practice Manager conwayl@ For more information about membership, please contact Laura Knowles at knowlesl@ 2013 The Advisory Board Company
Oncology Roundtable Project Director Deirdre Fuller Contributing Consultants Nick Bartz Lauren Stentz Design Consultant Adam Young Program Manager Lindsay Conway LEGAL CAVEAT The Advisory Board Company has made efforts to verify the accuracy of the information it provides to members. This report relies on data obtained from many sources, however, and The Advisory Board Company cannot guarantee the accuracy of the information provided or any analysis based thereon. In addition, The Advisory Board Company is not in the business of giving legal, medical, accounting, or other professional advice, and its reports should not be construed as professional advice. In particular, members should not rely on any legal commentary in this report as a basis for action, or assume that any tactics described herein would be permitted by applicable law or appropriate for a given member s situation. Members are advised to consult with appropriate professionals concerning legal, medical, tax, or accounting issues, before implementing any of these tactics. Neither The Advisory Board Company nor its officers, directors, trustees, employees and agents shall be liable for any claims, liabilities, or expenses relating to (a) any errors or omissions in this report, whether caused by The Advisory Board Company or any of its employees or agents, or sources or other third parties, (b) any recommendation or graded ranking by The Advisory Board Company, or (c) failure of member and its employees and agents to abide by the terms set forth herein. The Advisory Board is a registered trademark of The Advisory Board Company in the United States and other countries. Members are not permitted to use this trademark, or any other Advisory Board trademark, product name, service name, trade name, and logo, without the prior written consent of The Advisory Board Company. All other trademarks, product names, service names, trade names, and logos used within these pages are the property of their respective holders. Use of other company trademarks, product names, service names, trade names and logos or images of the same does not necessarily constitute (a) an endorsement by such company of The Advisory Board Company and its products and services, or (b) an endorsement of the company or its products or services by The Advisory Board Company. The Advisory Board Company is not affiliated with any such company. IMPORTANT: Please read the following. The Advisory Board Company has prepared this report for the exclusive use of its members. Each member acknowledges and agrees that this report and the information contained herein (collectively, the Report ) are confidential and proprietary to The Advisory Board Company. By accepting delivery of this Report, each member agrees to abide by the terms as stated herein, including the following: 1. The Advisory Board Company owns all right, title and interest in and to this Report. Except as stated herein, no right, license, permission or interest of any kind in this Report is intended to be given, transferred to or acquired by a member. Each member is authorized to use this Report only to the extent expressly authorized herein. 2. Each member shall not sell, license, or republish this Report. Each member shall not disseminate or permit the use of, and shall take reasonable precautions to prevent such dissemination or use of, this Report by (a) any of its employees and agents (except as stated below), or (b) any third party. 3. Each member may make this Report available solely to those of its employees and agents who (a) are registered for the workshop or membership program of which this Report is a part, (b) require access to this Report in order to learn from the information described herein, and (c) agree not to disclose this Report to other employees or agents or any third party. Each member shall use, and shall ensure that its employees and agents use, this Report for its internal use only. Each member may make a limited number of copies, solely as adequate for use by its employees and agents in accordance with the terms herein. 4. Each member shall not remove from this Report any confidential markings, copyright notices, and other similar indicia herein. 5. Each member is responsible for any breach of its obligations as stated herein by any of its employees or agents. 6. If a member is unwilling to abide by any of the foregoing obligations, then such member shall promptly return this Report and all copies thereof to The Advisory Board Company. 2
About the Oncology Roundtable The Oncology Roundtable is the Advisory Board s research membership for oncology program leaders at academic medical centers, cancer facilities, and community hospitals. Since 1999, we have offered administrators, physicians, and clinical staff the forecasting tools and best practice insights needed to answer the industry s most pressing strategic and operational questions: What are the essential components of a tumor site center-of-excellence? How do I develop financially sustainable patient navigation and survivorship programs? How will health care reform influence cancer care delivery and how do I prepare my cancer program? How do I better align with my cancer program s physicians in order to achieve best-in-class clinical quality, patient service, and cost control? How do I measure and demonstrate the quality of my cancer program s clinical care? This toolkit is a companion implementation guide designed to accompany the recent best practice publication Oncology Distress Screening and Management. This study aims to help cancer providers meet the diverse psychosocial, physical, and emotional needs of cancer patients by providing eight lessons for developing and implementing effective distress screening and management programs. Over the past several years, the Oncology Roundtable has developed numerous resources to assist program leaders in enhancing the patient experience. The most relevant resources are outlined here. Studies and tools, such as those described below, are available in unlimited quantities through the Oncology Roundtable membership. Maximizing the Value of Patient Navigation Lessons for Optimizing Program Performance Identify unmet patient needs and opportunities for process improvement Secure physician buy-in for the navigator role Measure the impact of navigation Learn how leading institutions have demonstrated a return on their investment in navigation Inside the Mind of the Cancer Patient Uncovering Patient Preferences to Guide Cancer Program Investment Comprehensive analysis of the results of a conjoint survey of over 700 cancer patients nationwide Learn how to prioritize program investment Discover strategies for eliciting actionable feedback from patients Delivering on the Promise of Patient-Centered Care Designing Services to Support the Whole Patient Establish a systematic approach to psychosocial screening and support Improve communication between patients and the care team Recognize the hallmarks of effective patient education and how to implement them Discover proven strategies for engaging patients as partners in their care Delivering Sustainable Survivorship Care Understand the pros and cons of existing survivorship models Explore potential pitfalls associated with survivorship program implementation Assess different approaches to providing survivorship treatment summaries and care plans Learn best practices for engaging patients in survivorship care Learn the keys to designing a financially sustainable model For more information on the Oncology Roundtable, please contact Laura Knowles at knowlesl@ or 202-568-7893. 3
How the Oncology Roundtable Serves its Members Services in Brief I Research and Insights II Performance Benchmarking III Implementation Support National Member Meetings Presentation of latest research findings, designed for oncology program leaders Volume Forecasters Analytic tools provide market-specific volume and case estimates and forecasts Implementation Tools Toolkits provide step-by-step guidance, and accompanying collateral, to ensure ease of execution of best practices Best Practice, Strategy Publications Comprehensive book-length topical reports providing real world case studies and strategies Operational Tools Customized analysis of program performance in key operational areas to drive improvement The Expert Center Consultation with Oncology Roundtable experts on any and all topics related to cancer program strategy and operations Live Webconferences Web-enabled educational intensives with expert Q&A; archived for on-demand access Performance Dashboards Key metrics, definitions and benchmarks to identify gaps in performance Customized Guidance In-depth conversations with Oncology Roundtable experts to support decision-making on critical issues Real-Time Analysis and Insights E-newsletter, Oncology Insights, and blog, Oncology Rounds, showcase ongoing research program updates and analysis of breaking news Member Surveys/Benchmarking Program infrastructure and operational benchmarks garnered through member surveys Facilitated Networking Myriad opportunities to facilitate peer-to-peer conversations, learning For more information on the Oncology Roundtable, please contact Laura Knowles at knowlesl@ or 202-568-7893. 4
Introduction A cancer diagnosis brings physical, emotional, social, psychological, functional, spiritual, and practical consequences into patients lives. With new Commission on Cancer standards and a shift towards value-driven reimbursement, cancer programs will be increasingly responsible for meeting these diverse needs. To provide sufficient support to their patients, cancer programs need to develop efficient and effective distress screening and management programs. For many programs, connecting patients to the right services in a timely fashion remains a significant challenge. This tool aims to help cancer service line leaders as they implement distress screening and management programs. To help cancer programs in their efforts, this tool outlines six steps to creating a distress program: Step 1: Define your program s capabilities... 3 Step 2: Select a screening tool... 5 Step 3: Integrate screening into cancer center workflow... 7 Step 4: Manage distress interventions...8 Step 5: Map process for distress screening... 9 Step 6: Map resources for distress management... 10 5
Step 1: Define Your Program s Capabilities Overview When establishing distress screening programs, most systems fail to take the time to discuss their priorities for distress management and define a unified vision. To ensure that distress screening is aligned with institutional goals, the first step for cancer programs is to identify all stakeholders that will be involved in distress management. This includes reaching out to institutional resources that can meet patient needs and reduce the burden on cancer resources. All stakeholders should be involved when discussing the development of a distress management program. Cancer program leaders can use the guides below to organize a planning meeting and to pinpoint internal and external resources that offer support services to cancer patients. Invite Relevant Stakeholders to Planning Meeting Physicians Nurses Cancer Program Patient Clerical Staff Palliative Care Financial Service Administrators Representative Team Representatives Social Substance Use Pharmacy IT Staff Spiritual/Religious Dietitian Additional Workers Counselors Service Ancillary Service Coordinators Providers Assess Existing Resources 1. Each representative discusses his/her priorities for distress screening to define one unified vision of what the cancer program should provide to each patient. 2. Each representative states his/her position, capabilities and potential role in screening and management. 3. Team collaboratively identifies hospital-wide resources available to cancer patients. 4. Team collaboratively identifies community resources available to cancer patients. Identify Community Resources In addition to the resources listed on the following page, identify organizations in your town or city that may provide support services for your patients. Consider the following questions: 1. What type of services (i.e., support groups, telephone helpline) do they provide for patients? 2. Do they provide one-on-one support to patients? 3. Do they have an affiliate or community site in your area? 4. Who works for these organizations? Are staff members oncology-trained? 5. Do they offer any support or education for cancer providers? 6
Step 1: Define Your Program s Capabilities (cont.) Identify Community Resources (cont.) The table below provides a brief description of a number of national organizations offering free services to patients and providers. Some of the organizations have satellite sites across the country that host in-person events and support groups. Organization Education Services Offered to Patients Support Groups Financial Assistance Counseling (Virtual or In-Person) Trained Oncology Social Workers on Staff Free Educational Resources for Providers American Cancer Society 1 National Cancer Institute CancerCare 1 Cancer Support Community 2 Association of Community Cancer Centers LiveStrong Caring4Cancer Cancer Hope Network American Psychosocial Oncology Society 1) Sites in NY, NJ, CT. 2) Sites nation-wide. 7
Step 2: Select a Screening Tool Overview The next challenge for cancer programs is to select a distress screening tool. Most programs fail to consider all possibilities before implementing a screening program. As a team, evaluate which screening tool will best meet your program s and your patients needs. Consider the following questions when assessing each tool: What is feasible with our program s resources? What type of support do we want to provide for our patients? What IT capabilities do we have? The table below is a non-comprehensive list of tools commonly used for distress screening. Survey Tool Length (Average Time to Complete) Qualitative Description Recommended Cut-Off Score 1 Pricing NCCN 2 Distress Thermometer (DT) and Problem List (PL) 1 item on global distress, 34 items on specific needs (2-3 DT measures emotional distress with one item on a 0-10 scale PL assesses psychosocial, practical, and physical symptoms >4 signals intervention Free Brief Symptom Inventory (BSI)-18 18 items (3-5 Global severity index with depression, anxiety, and somatization subscales Men >10, women >13 Available for purchase Edmonton Symptom Assessment Scale (ESAS) 9 items (5 Screens for psychosocial and physical concerns Most common distress assessment used in Canada >7 Free Functional Assessment of Cancer Therapy General (FACT-G) 27 items (5-10 Can be supplemented with tumoror symptom-specific questionnaires Inverse scoring rubric Free General Health Questionnaire (GHQ) -12 12 items (5 Comparable to DT and BSI-18 in detecting distress Anxiety, depression, fatigue, and social functioning subscales >5 Available for purchase Hospital Anxiety and Depression Scale (HADS) 14 items (5-10 Depression and anxiety specific >8 anxiety, >11 depression subscales Available for purchase Kessler (K)-10 10 items (2-3 Improves detection in conjunction with DT Anxiety, depression, fatigue, and agitation subscales >22 Free Profile of Mood States (POMS) 65 items (3-5 Evaluates six mood states: anxiety, fatigue, confusion, depression, anger, and vigor Not available Available for purchase Psychological Distress Inventory (PDI) 13 items (5 Detects anxiety and depression >28 Free 1) Patients scoring above the recommended cut-off score may have significant distress, requiring further assessment and intervention by the care team. 2) National Comprehensive Cancer Network. 8
Step 2: Select a Screening Tool (cont.) Survey Tool Length (Average Time to Complete) Qualitative Description Recommended Cut-Off Score 1 Pricing Patient Health Questionnaire-9 (PHQ-9) 9 items (5 items) Depression subscale of the Patient Health Questionnaire >15 Free Psychosocial Screen for Cancer (PSSCAN) 21 items (5-10 Assesses anxiety, depression, social support, and quality of life >8 anxiety, >11 depression subscales Free Questionnaire on Distress in Cancer Patients (QSC-R10) 10 items (5 Assesses psychosocial needs and symptom severity >14 Free Zung Self-Rating Depression Scale 20 items (5-10 Assesses for symptoms of depression >50 Free Polaris Distress Management Adjustable Computer adaptive testing Provides patient and provider reports with normalized patient data Assesses physical, emotional, cognitive, and social functioning Patient can choose to receive education or referrals Automated Implementation and yearly fee CancerSupportSource 25 items (5-10 Provides patient and provider reports Assesses physical, emotional, cognitive, and social functioning Automated Implementation and yearly fee Patient Care Monitor 80 items (male), 86 items (female) (10-15 Assesses physical, emotional, cognitive, and social functioning Provider receives report of patient concerns with potential issues highlighted Automated IT integration fees SupportScreen 53 items (can adjust to institution) (10-15 Assesses physical, emotional, cognitive, and social functioning Provider receives report of patient concerns Patient can choose to receive education or referrals Automated Implementation and yearly fee NIH PROMIS 2 Survey Instruments 4-7 items per symptom (5-10 Self-reported computer adaptive testing drawn from calibrated item banks Domains for cancer-related depression, anxiety, fatigue, and physical function Assessment Center SM enables researchers to create studyspecific websites for capturing patient data securely online Automated Free 1) Patients scoring above the recommended cut-off score may have significant distress, requiring further assessment and intervention by the care team. 2) Patient Reported Outcomes Measurement Information System. 9
Step 3: Integrate Screening into Cancer Center Workflow Overview Once a screening tool has been selected, the next challenge is integrating the screening process into cancer center workflow. Inefficient screening processes will lead to increased staff work and decreased patient capture. The first decision is choosing how to deliver the screening assessment. Many programs currently provide paper-based tools, which require manual scoring and analysis of patient needs. Alternatively, programs may opt to automate screening so that results are instantly linked to the patient record. Automated screening is more efficient, reduces the amount of staff work, and has potential to trigger automatic interventions; however, it requires a significant upfront investment. Decide as a team which delivery mechanism will ultimately help you achieve your goals for distress screening. Delivery Mechanism Description Associated Staff Work Ease of Patient Use Technical Support Required Paper-Based Tool administered with paper and pencil Results manually scored, manually entered into patient medical record Tablet-Based Tool administered in clinic Results automatically linked to EMR or patient database Patient Portal Patient can access survey through EMR patient portal Results automatically integrated into EMR EMR Module Survey integrated into patient registration process within EMR Results integrated into medical record Next, determine how the screening process can best be integrated into cancer center workflow. Consider some of the following questions and potential solutions: 1. When is the best time for patients to be screened? Prior to their arrival at the cancer center During registration During nurse intake During physician visit Following the appointment 2. Where is the best place for patients to be screened? From their home In the waiting room In the exam room In the resource center 3. Who will administer the screening? Registration staff Nurse Social worker Physician 10
Step 4: Manage Distress Interventions Overview One of the biggest challenges for cancer programs is efficiently connecting patients to necessary support services. As a team, you need to decide how patients will be connected to the right services based on the needs identified. Decide the best way to allocate program resources to patients based on the severity of their symptoms. Consider the following: 1. How will scores be analyzed? Registration staff will analyze scores and alert clinician if scores are above threshold Nurses will analyze scores and alert physician if scores are above threshold Physicians will score all screenings and perform more thorough assessment Social workers will analyze all screenings and perform more thorough assessment Automated analysis and alerts integrated into EMR 2. What is an acceptable timeframe for us to follow up with patients? Immediately Within one day Within three days Within one week 3. How can we take the patients preferences into account when designing interventions? Cancer programs can lessen the burden of distress management by offering educational support to patients. Given a choice, most low-acuity patients will request education rather than a consult with their care team. Consider the following options: Use patient-administered survey instruments Offer educational resources to all patients Divert educational requests to medical librarian, resource center, or education center 4. Can we make the business case to invest in an automated system? Although automated systems require significantly more upfront investment than paper-based screening tools, programs should carefully weigh the benefits of automating distress management. Consider the following factors: Staff and clinician time needed to complete paper-based screening and coordinate downstream referrals Potential downstream revenue from support services, such as substance and tobacco use counseling, resulting from automated screening 11
Step 5: Map Process for Distress Screening Overview The next challenge for the team is to hardwire the distress screening process and assign responsibility for each step. This is critical for creating a unified vision, maximizing screening efficiency, and increasing patient capture. Once the team has defined the screening process, draw out how screening at your institution will look - from distribution of the survey to assessment of patient needs - in the boxes below. Use as many or as few boxes as needed. The more complex the process, the greater the possibility of error, so consider how to consolidate steps if there are more than six. Within each box, write the names of the staff and/or clinicians responsible for each step of the screening process. Step #1 Step #2 Step #3 1 2 3 Step #6 Step #5 Step #4 6 5 4 12
Step 6: Map Resources for Distress Management Overview The final challenge is to define the interventions patients will receive for each specific need. Without a clear distress management plan, patients will experience delays in care or will fail to receive the support they need. For this final step, draw out how your program plans to address the needs uncovered by distress screening. For each box on the left side of the column, identify the need uncovered by screening (depression, fatigue, financial concerns, etc.). For each box on the right, identify resources within the cancer program, institution, and community that will help address each need. On the line beneath each box, indicate the staff, clinician, or team responsible for ensuring that patients are connected to the appropriate support services. Continue onto the following pages as needed. Distress Symptom Downstream Actions 13
Step 6: Map Resources for Distress Management (cont.) Distress Symptom Downstream Actions 14
Step 6: Map Resources for Distress Management (cont.) Distress Symptom Downstream Actions 15
Step 6: Map Resources for Distress Management (cont.) Distress Symptom Downstream Actions 16
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