Establishing and Enhancing Services for Childhood Cancer Survivors LONG-TERM FOLLOW-UP PROGRAM RESOURCE GUIDE Children’s Oncology Group Nursing Discipline Clinical Practice Subcommittee/Survivorship in collaboration with the Late Effects Committee Establishing and Enhancing Services for Childhood Cancer Survivors: Long-Term Follow-Up Program Resource Guide Children’s Oncology Group Nursing Discipline Clinical Practice Subcommittee/Survivorship in collaboration with the Late Effects Committee Editor: Wendy Landier Copyright 2007 © Children’s Oncology Group All rights reserved worldwide The Children’s Oncology Group grants permission to download Establishing and Enhancing Services for Childhood Cancer Survivors: Long-Term Follow-Up Program Resource Guide (including associated Appendices) from www.childrensoncologygroup.org or www.survivorshipguidelines.org and to print copies for individual and institutional use, as long as the following conditions are met: (1) Copies are not sold or distributed for commercial advantage, and (2) the Children's Oncology Group copyright and its date appear on the printed copies. DISCLAIMER: Every effort has been exerted to ensure that information contained in this reference is in accord with current recommendations and practice at the time of this publication. Though every effort has been made to ensure accuracy, the Children's Oncology Group and its affiliated organizations and member institutions disclaims all responsibility for any errors or omissions contained herein. ii Establishing and Enhancing Services for Childhood Cancer Survivors LTFU PROGRAM RESOURCE GUIDE EDITOR Wendy Landier, RN, MSN, CPNP, CPON® Chair, Survivorship Section, COG Nursing Clinical Practice Subcommittee Clinical Director, Center for Cancer Survivorship City of Hope National Medical Center, Duarte, California SECTION EDITORS Scott Hawkins, LMSW Pediatric Oncology Social Worker Helen DeVos Children’s Hospital, Grand Rapids, Michigan Marcia Leonard, RN, PNP Coordinator, Late Effects Program, C.S. Mott Children’s Hospital University of Michigan, Ann Arbor, Michigan Kathleen Meeske, RN, PhD Assistant Professor, Keck School of Medicine, University of Southern California Director, Health Outcomes and Cancer Control Research HOPE Program, Childrens Center for Cancer and Blood Diseases Childrens Hospital Los Angeles, Los Angeles, California Susan Shannon, RN, MSN, CPNP, CPON® Coordinator, “STAR” Late Effects Program Miller Children’s Hospital, Long Beach, California Aimee Sznewajs RN, MS, PNP Survivorship Program Coordinator UCSF Children’s Hospital, San Francisco, California COG LATE EFFECTS COMMITTEE Smita Bhatia, MD, MPH Chair, Late Effects Committee, Children’s Oncology Group Professor and Chair, Division of Population Sciences City of Hope National Medical Center, Duarte, California Kevin Oeffinger, MD Project Liaison, COG Late Effects Committee Director, Adult Survivor Program Memorial Sloan-Kettering Cancer Center, New York, New York iii LTFU Program Resource Guide CONTRIBUTORS Elaine Arbez, RN Debra Eshelman, RN, MSN, CPNP Cancer Care Manitoba After the Cancer Experience Program Winnipeg, Manitoba, Canada Children’s Medical Center - Dallas Dallas, TX Lisa Bashore, RN, MS, CPNP, CPON® Life After Cancer Program John Gates, MD Cook Children’s Medical Center Children’s Hospital Central California Forth Worth, TX Madera, CA Susan Bock, RN, MSN, CPNP Kristi Geib, PNP University of Wisconsin – University of North Carolina Gundersen Lutheran Chapel Hill, NC La Crosse, WI Erin Hartnett, RN, PNP Theresa Carbone, RN, MS, CPNP, FNP New York University Medical Center Long-Term Follow-Up Clinic New York, NY Roswell Park Cancer Institute Buffalo, NY Jeanne Harvey, RN, MS, PNP Washington University Medical Center Clarita Carino, RN St. Louis, MO Newark Beth Israel Medical Center Newark, NJ Katharine Johnston, RN, APRN-BC, PNP Columbus Children’s Hospital Claire Carlson, RN, BSN Columbus, OH Cancer Survivorship Program The Children’s Hospital of Philadelphia Karen Kinahan, RN, MS Philadelphia, PA STAR Late Effects Program Northwestern Univ. Medical Center Jacqueline Casillas, MD Chicago, IL Director, Life After Cancer Clinic UCLA Medical Center Kathy Martin, RN, CPNP Los Angeles, CA Carolinas Medical Center Charlotte, NC Hope Ann Castoria, RN LTFU Program Coordinator Rebecca Martin, RN, MSN, ARNP Hackensack University Medical Center MD Anderson Cancer Center Hackensack, NJ Orlando, FL ® Cindy Cochran, RN, MSN, PNP Charlene Maxen, RN, CNP, CPON UT Southwestern Medical Center Akron Children’s Hospital Children’s Medical Center - Dallas Akron, OH Dallas, TX Barbara Mathis, RN, MSN, FNP, CPON® Rose Dunaway, RN, CPON® Newark Beth Israel Medical Center University of North Carolina Newark, NJ Chapel Hill, NC iv LTFU Program Resource Guide CONTRIBUTORS Sal McKeel, RN Linda Rivard, RN Christus Santa Rosa Children’s Hospital POST Program San Antonio, TX Advocate Hope Children’s Hospital Oak Lawn, IL Ann P. McKenzie, RN, NP St. Christopher’s Hospital for Children Sheila Santacroce, APRN, CPNP, PhD Philadelphia, PA School of Nursing and HEROS Program Yale University Jill Meredith, RN, BSN, OCN® New Haven, CT Driscoll Children’s Hospital Corpus Christi, TX Susan Shaw, RN, MS, PNP Kids Now Off Therapy Clinic Revonda Mosher, RN, MSN, CPNP, CPON® SUNY Upstate Medical University Sinai Hospital of Baltimore Syracuse, NY Baltimore, MD Pamela Smith, RN, NP Katy Murphy, RN West Virginia University Long-Term Follow-Up Clinic Charleston, WV Children’s Hospital of Wisconsin Milwaukee, WI Johanne Soucy, RN, B.Sc.N McGill University/ Kirsten Ness, PT, PhD Montreal Children’s Hospital St. Jude Children’s Research Hospital Montreal, Quebec, Canada Memphis, TN Teresa Sweeney, RN, MSN, CPNP Josee Pacifico, RN, BSc (N) After Completion of Therapy Clinic McGill University/ St. Jude Children’s Research Hospital Montreal Children’s Hospital Memphis, TN Montreal, Quebec, Canada Genevieve Sylvain, RN Amy Pasmann, RN HOPE Clinic Primary Children’s Medical Center The Children’s Hospital Salt Lake City, UT Denver, CO Angie Pemberton Children’s Oncology Group Patient Advocacy Committee Jefferson City, MO v LTFU Program Resource Guide REVIEWERS LaVette Bowles, RN, FNP UCLA Mattel Children's Hospital Los Angeles, CA Erin Hartnett, RN, MSN, CPNP NYU Medical Center New York, NY Barbara Lockart, RN, MSN, CPNP STAR Program Children's Memorial Hospital Chicago, IL Mary Baron Nelson, RN, MS, CPNP, CPON® Childrens Hospital Los Angeles Los Angeles, CA Kathleen Ruccione, RN, MPH, FAAN, CPON® Chair, Nursing Discipline, Children's Oncology Group Children's Hospital Los Angeles, Los Angeles, CA Associate Professor of Clinical Pediatrics, Keck School of Medicine, USC Janet Veatch, RN, MN, CNS Veatch Solutions San Francisco, CA Karla Wilson, RN, MSN, FNP-C, CPON® Nurse Practitioner, Childhood Cancer Survivorship Program City of Hope National Medical Center Duarte, CA Terri Wolf, RN, BSN Pediatric Oncology Program Sutter Medical Center Sacramento, CA vi LTFU Program Resource Guide TABLE OF CONTENTS FOREWORD…………………………………………………………………………………… x INTRODUCTION………………………………………………………………………………. xii SECTION 1: FOUNDATIONS FOR LONG-TERM FOLLOW-UP………………………... 1 THE IMPORTANCE OF LONG-TERM FOLLOW-UP………………………………… 2 Late Effects after Childhood Cancer……………………………………………….. 3 Research: Key to Determining Risks of Late Effects…………………………….. 4 Key Role of Nurse Practitioners in Long-Term Follow-Up...…………………….. 5 Long-Term Follow-Up Care………………………………......…………………….. 6 Resources for Long-Term Follow-Up Programs.………......…………………….. 7 MODELS OF LONG-TERM FOLLOW-UP CARE………………………………..…… 8 Determining the Model of Care…………………………………………………….. 8 Choosing a Model: Considerations…………………..…………………………….. 8 Cancer Center Models………………………………………...…………………….. 9 Community-Based Models.………………………………......…………………….. 10 Need-Based Models………………………………………......…………………….. 10 Advantages/Disadvantages of Models…………………………………………….. 11 TRANSITION ISSUES……………………………...………………………………..……13 Phase I: Transition to Long-Term Follow-Up………………………………………13 Phase II: Transition to Adult Healthcare……………………………………………13 CHALLENGES/BARRIERS……………………….………………………………..…… 14 Knowledge Deficits – Survivors…………………………………………………….. 14 Knowledge Deficits – Healthcare Professionals………………………………….. 14 Psychological Factors Affecting Follow-Up Care………………………………….14 Healthcare System Issues………………………………………………………….. 15 Financial/Insurance Issues…………………………………………………………..15 Overcoming the Barriers/Challenges in Survivorship Care………….………….. 15 Barriers to Risk-Based Healthcare…..…………………………………………….. 16 SECTION 2: PROGRAM DEVELOPMENT………………………………………………... 17 INITIAL CONSIDERATIONS…………………………..………………………………… 18 Determining Program Goals…………………………………….………………….. 18 Assessing Institutional Needs…………………….…………….………………….. 18 Assessing Resources………...………………………………….………………….. 18 Identifying, Recruiting and Retaining Patients……………………………………. 19 Assessing Patient Needs…………………………………………………………….19 DETERMINING PROGRAM PARAMETERS………..………………………………… 20 Initiation of Long-Term Follow-Up Care………….…………….………………….. 20 Transition from Acute Care to Long-Term Follow-Up……….……………….….. 20 Age Range/Age Limits………………………………….……….……………….….. 20 General versus Specialized Long-Term Follow-Up………….……………….….. 21 Determining Frequency of Clinic Visits…………….………….……………….….. 21 Transition to the Adult Healthcare System………...………….……………….…..22 Resources for Assisting Patients with Healthcare Transitions..…………….….. 22 vii LTFU Program Resource Guide BUILDING A MULTIDISCIPLINARY TEAM..………..…………………………………23 PROGRAM FUNDING………………………...………..…………………………………24