Disparities and Barriers to Pediatric Cancer Survivorship Care

Project Summary Title and Description

Disparities and Barriers to Pediatric Cancer Survivorship Care
Objectives. Survival rates for pediatric cancer have dramatically increased since the 1970s and the population of childhood cancer survivors (CCS) exceed 500,000 in the US. Cancer during childhood and related treatments lead to long-term health problems, many of which are poorly understood. These problems can be amplified by suboptimal survivorship care. This report provides an overview of the existing evidence and forthcoming research relevant to disparities and barriers for pediatric cancer survivorship care, outlines pending questions, and offers guidance for future research. Data Sources. This technical brief reviews published peer-reviewed literature, grey literature, and key informant interviews to answer five guiding questions regarding disparities in the care of pediatric survivors, barriers to cancer survivorship care, proposed strategies, evaluated interventions, and future directions. Review Methods. We searched research databases, research registries, and published reviews for ongoing and published studies in CCS to October 2020. We used the authors’ definition of CCS; where not specified, CCS included those diagnosed with any cancer prior to age 21. The grey literature search included relevant professional and non-profit organizational websites and guideline clearing houses. Key informants provided content expertise regarding published and ongoing research, and recommended approaches to fill identified gaps. Results. In total, 110 studies met inclusion criteria. We identified 26 studies that assessed disparities in survivorship care for CCS. Key informants discussed subgroups of CCS by race or ethnicity, sex, socioeconomic status, and insurance coverage that may experience disparities in survivorship care and these groups that experience disparities were supported in the published literature. Key informants indicated that major barriers to care are providers (e.g., insufficient knowledge), the health system (e.g., availability of services), and payers (e.g., network adequacy); we identified 47 studies that assessed a large range of barriers to survivorship care. Sixteen organizations have outlined strategies to address pediatric survivorship care. Our searches identified only 27 published studies that evaluated interventions to alleviate disparities and reduce barriers to care. These predominantly assessed approaches that targeted patients. We found only eight ongoing studies that evaluated strategies to address disparities and barriers. Conclusions. While research has addressed disparities and barriers to survivorship care for childhood cancer survivors, evidence-based interventions to address these disparities and barriers to care are sparse. Additional research is also needed to examine less frequently studied disparities and barriers and to evaluate ameliorative strategies in order to improve the survivorship care for CCS.
Authors of Report
Erin M. Mobley, Ph.D. Diana J. Moke, M.D. Joel Milam, Ph.D. Carol Y. Ochoa, M.P.H. Julia Stal, B.A. Nosa Osazuwa, B.A. Maria Bolshakova, B.S. Jai Kemp, B.A. Jennifer E. Dinalo, Ph.D. Aneesa Motala, B.A. Drizelle Baluyot, B.A. Susanne Hempel, Ph.D.
Methodology description
Systematic Review
Report can be found here: https://www.ncbi.nlm.nih.gov/books/NBK568475/ and https://effectivehealthcare.ahrq.gov/products/pediatric-cancer-survivorship/research Data was entered into this project prospectively.
Funding Source
Agency for Healthcare Research and Quality

Key Questions

1. Guiding Question 1. What are the disparities in survivorship care for pediatric cancer survivors?
2. Guiding Question 2. What are the barriers to survivorship care for pediatric cancer survivors who experience disparities?
3. Guiding Question 3. What are proposed strategies for addressing those barriers?
4. Guiding Question 4. What published and unpublished studies have assessed these strategies?
5. Guiding Question 5. What are future directions for research in addressing barriers to survivorship care for pediatric cancer survivors?

Associated Extraction Forms

Associated Studies (each link opens a new tab)

Title Authors Year
Cancer-related follow-up care among Hispanic and non-Hispanic childhood cancer survivors: The Project Forward study Milam, Joel E., Meeske, Kathleen, Slaughter, Rhona I., Sherman-Bien, Sandra, Ritt-Olson, Anamara, Kuperberg, Aura, Freyer, David R., Hamilton, Ann S. 2015
Health Care of Young Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas JN, Chen H, Whitton JA, Yeazel M, Yasui Y, LL 2004
Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, version 5.0 2018
Awareness about past diagnosis and treatment history: nationwide survey of childhood cancer survivors and their parents Ahn, E., Park, H. J., Baek, H. J., Hwang, P. H., Lee, Y. H., Park, B. K., Kim, Y. S., Shim, H. Y., Shin, D., Yang, H. K., Park, J. H., Park, K. D. 2017
Factors that contribute to post-treatment follow-up care for survivors of childhood cancer Barakat, L. P., Schwartz, L. A., Szabo, M. M., Hussey, H. M., Bunin, G. R. 2012
Evaluation of the Utility of a Transition Workbook in Preparing Adolescent and Young Adult Cancer Survivors for Transition to Adult Services: A Pilot Study Bashore, L., Bender, J. 2016
Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care Berg, C. J., Stratton, E., Esiashvili, N., Mertens, A. 2016
Social determinants of health affecting treatment of pediatric brain tumors Berkman, J. M., Dallas, J., Lim, J., Bhatia, R., Gaulden, A., Gannon, S. R., Shannon, C. N., Esbenshade, A. J., Wellons, J. C. 2019
Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors Casillas, J., Kahn, K. L., Doose, M., Landier, W., Bhatia, S., Hernandez, J., Zeltzer, L. K. 2010
How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG Survivorship Center of Excellence Network Casillas, J., Syrjala, K. L., Ganz, P. A., Hammond, E., Marcus, A. C., Moss, K. M., Crespi, C. M., Lu, P., McCabe, M. S., Ford, J. S., Jacobs, L. A., Pucci, D., Palmer, S. C., Termuhlen, A. M., Diller, L., Campbell, M., Jones, B., Friedman, D. L. 2011
The use of mobile technology and peer navigation to promote adolescent and young adult (AYA) cancer survivorship care: results of a randomized controlled trial Casillas, J. N., Schwartz, L. F., Crespi, C. M., Ganz, P. A., Kahn, K. L., Stuber, M. L., Bastani, R., Alquaddomi, F., Estrin, D. L. 2019
Engaging Latino Adolescent and Young Adult (AYA) Cancer Survivors in Their Care: Piloting a Photonovela Intervention Casillas, J. N., Schwartz, L. F., Gildner, J. L., Crespi, C. M., Ganz, P. A., Kahn, K. L., Stuber, M. L., Bastani, R., Morales, S., Quintana, K., Gonzalez, A., Casas, E., Barboa, E. 2020
Knowledge and risk perception of late effects among childhood cancer survivors and parents before and after visiting a childhood cancer survivor clinic Cherven, B., Mertens, A., Meacham, L. R., Williamson, R., Boring, C., Wasilewski-Masker, K. 2014
Marriage, employment, and health insurance in adult survivors of childhood cancer Crom, D. B., Lensing, S. Y., Rai, S. N., Snider, M. A., Cash, D. K., Hudson, M. M. 2007
Advancing Survivors' Knowledge (ASK) about skin cancer study: study protocol for a randomized controlled trial Daniel, C. L., Armstrong, G. T., Keske, R. R., Davine, J. A., McDonald, A. J., Sprunck-Harrild, K. M., Coleman, C., Haneuse, S. J., Mertens, A. C., Emmons, K. M., Marghoob, A. A., Elkin, E. B., Dusza, S. W., Robison, L. L., Geller, A. C. 2015
Disseminating a smoking cessation intervention to childhood and young adult cancer survivors: baseline characteristics and study design of the partnership for health-2 study e Moor, J. S., Puleo, E., Ford, J. S., Greenberg, M., Hodgson, D. C., Tyc, V. L., Ostroff, J., Diller, L. R., Levy, A. G., Sprunck-Harrild, K., Emmons, K. M. 2011
Parent-perceived Facilitators in the Transition of Care for Young Adult Survivors of Childhood Cancer DiNofia, A., Shafer, K., Steacy, K., Sadak, K. T. 2017
Value of professional collaboration in the care of children with cancer and their families Eilertsen, M. E., Reinfjell, T., Vik, T. 2004
Extent of smoking and age at initiation of smoking among adult survivors of childhood cancer in Britain Frobisher, C., Winter, D. L., Lancashire, E. R., Reulen, R. C., Taylor, A. J., Eiser, C., Stevens, M. C., Hawkins, M. M. 2008
Educational, occupational, and insurance status of childhood cancer survivors in their fourth and fifth decades of life Hays, D. M., Landsverk, J., Sallan, S. E., Hewett, K. D., Patenaude, A. F., Schoonover, D., Zilber, S. L., Ruccione, K., Siegel, S. E. 1992
Childhood cancer survivors: Anxieties felt after treatment and the need for continued support Iwai, N., Shimada, A., Iwai, A., Yamaguchi, S., Tsukahara, H., Oda, M. 2017
Model for long-term follow-up of survivors of childhood cancer Jereb, B. 2000
Hospital attendance patterns in long term survivors of cancer Johnson, R., Horne, B., Feltbower, R. G., Butler, G. E., Glaser, A. W. 2004
Feasibility and preliminary outcomes from a pilot study of coping skills training for adolescent--young adult survivors of childhood cancer and their parents Judge Santacroce, S., Asmus, K., Kadan-Lottick, N., Grey, M. 2010
Surviving cancer competently intervention program (SCCIP): a cognitive-behavioral and family therapy intervention for adolescent survivors of childhood cancer and their families Kazak, A. E., Simms, S., Barakat, L., Hobbie, W., Foley, B., Golomb, V., Best, M. 1999
Survivors of cancer in childhood Li, F. P., Stone, R. 1976
Survey of childhood cancer survivors who stopped follow-up physician visits Maeda, N., Horibe, K., Kato, K., Kojima, S., Tsurusawa, M. 2010
SIOP Working Committee on Psychosocial issues in pediatric oncology: guidelines for care of long-term survivors Masera, G., Chesler, M., Jankovic, M., Eden, T., Nesbit, M. E., Van Dongen-Melman, J., Epelman, C., Ben Arush, M. W., Schuler, D., Mulhern, R. 1996
Predictors of Suboptimal Follow-up in Pediatric Cancer Survivors May, L., Schwartz, D. D., Frug, E., Laufman, L., Holm, S., Kamdar, K., Harris, L., Brackett, J., Unal, S., Tanyildiz, G., Bryant, R., Suzawa, H., Dreyer, Z., Okcu, M. F. 2017
Patterns of physician follow-up among young cancer survivors: report of the Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS) research program McBride, M. L., Lorenzi, M. F., Page, J., Broemeling, A. M., Spinelli, J. J., Goddard, K., Pritchard, S., Rogers, P., Sheps, S. 2011
A Collaborative Step-Wise Process to Implementing an Innovative Clinic for Adult Survivors of Childhood Cancer McClellan, W., Fulbright, J. M., Doolittle, G. C., Alsman, K., Klemp, J. R., Ryan, R., Nelson, E. L., Stegenga, K., Krebill, H., Al-hihi, E. M., Schuetz, N., Heiman, A., Lowry, B. 2015
Can health beliefs help in explaining attendance to follow-up care? The Swiss childhood cancer survivor study Michel, G., Kuehni, C. E., Rebholz, C. E., Zimmermann, K., Eiser, C., Rueegg, C. S., von der Weid, N. X. 2011
Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives Mouw, M. S., Wertman, E. A., Barrington, C., Earp, J. A. 2017
Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer Nathan, P. C., Agha, M., Pole, J. D., Hodgson, D., Guttmann, A., Sutradhar, R., Greenberg, M. L. 2016
Late effects of therapy in survivors of Ewing's sarcoma family tumors Novakovic, B., Fears, T. R., Horowitz, M. E., Tucker, M. A., Wexler, L. H. 1997
Influenza vaccination coverage among adult survivors of pediatric cancer Ojha, R. P., Offutt-Powell, T. N., Gurney, J. G. 2014
Development of a Web-Based Psychosocial Intervention for Adolescent and Young Adult Survivors of Pediatric Brain Tumor Raj, S. P., Narad, M. E., Salloum, R., Platt, A., Thompson, A., Baum, K. T., Wade, S. L. 2018
Barriers and Facilitators of Transition from Pediatric to Adult Long-Term Follow-Up Care in Childhood Cancer Survivors Rosenberg-Yunger, Z. R., Klassen, A. F., Amin, L., Granek, L., D'Agostino, N. M., Boydell, K. M., Greenberg, M., Barr, R. D., Nathan, P. C. 2013
Patient-perceived facilitators in the transition of care for young adult survivors of childhood cancer Sadak, K. T., Dinofia, A., Reaman, G. 2013
Psychosocial supportive care for children receiving stem cell transplantation: practice patterns across centers Sherman, A. C., Simonton, S., Latif, U., Nieder, M. L., Adams, R. H., Mehta, P. 2004
The impact of a managed transition of care upon psychosocial characteristics and patient satisfaction in a cohort of adult survivors of childhood cancer van Laar, M., Glaser, A., Phillips, R. S., Feltbower, R. G., Stark, D. P. 2013
"Forewarned and forearmed": Long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care Vetsch, J., Fardell, J. E., Wakefield, C. E., Signorelli, C., Michel, G., McLoone, J. K., Walwyn, T., Tapp, H., Truscott, J., Cohn, R. J. 2017
Understanding predictors of continued long-term pediatric cancer care across the region: A report from the Consortium for New England Childhood Cancer Survivors Welch, J. J. G., Kenney, L. B., Hirway, P., Usmani, G. N., Kadan-Lottick, N., Grewal, S. S., Huang, M., Bradeen, H., Ader, J., Diller, L., Schwartz, C. L. 2017
Long-term follow-up care for pediatric cancer survivors 2009
Shared Care of Childhood Cancer Survivors: A Telemedicine Feasibility Study Costello, A. G., Nugent, B. D., Conover, N., Moore, A., Dempsey, K., Tersak, J. M. 2017
Survivor clinic attendance among pediatric- and adolescent-aged survivors of childhood cancer Daly, A., Lewis, R. W., Vangile, K., Masker, K. W., Effinger, K. E., Meacham, L. R., Mertens, A. C. 2019
Availability of smoking prevention and cessation services for childhood cancer survivors e Moor, J. S., Puleo, E., Butterfield, R. M., Li, F. P., Emmons, K. M. 2007
Scalability of cancer SurvivorLink: A cluster randomized trial among pediatric cancer clinics Escoffery, C., Gilleland Marchak, J., Haardrfer, R., Meacham, L., Williamson Lewis, R., Udelson, H., Edwards, P., Mertens, A. C. 2019
Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors Granek, L., Nathan, P. C., Rosenberg-Yunger, Z. R., D'Agostino, N., Amin, L., Barr, R. D., Greenberg, M. L., Hodgson, D., Boydell, K., Klassen, A. F. 2012
Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study Howard, A. F., Kazanjian, A., Pritchard, S., Olson, R., Hasan, H., Newton, K., Goddard, K. 2018
Childhood cancer survivors' primary care and follow-up experiences Kirchhoff, A. C., Montenegro, R. E., Warner, E. L., Wright, J., Fluchel, M., Stroup, A. M., Park, E. R., Kinney, A. Y. 2014
Health insurance coverage, care accessibility and affordability for adult survivors of childhood cancer: a cross-sectional study of a nationally representative database Kuhlthau, K. A., Nipp, R. D., Shui, A., Srichankij, S., Kirchhoff, A. C., Galbraith, A. A., Park, E. R. 2016
A randomized controlled pilot trial of a Web-based resource to improve cancer knowledge in adolescent and young adult survivors of childhood cancer Kunin-Batson, A., Steele, J., Mertens, A., Neglia, J. P. 2016
Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative study of survivorship providers Sadak, K. T., Neglia, J. P., Freyer, D. R., Harwood, E. 2017
Transitional care practices, services, and delivery in childhood cancer survivor programs: A survey study of U.S. survivorship providers Sadak, K. T., Szalda, D., Lindgren, B. R., Kinahan, K. E., Eshelman-Kent, D., Schwartz, L. A., Henderson, T., Freyer, D. R. 2019
Primary care physician perceptions of adult survivors of childhood cancer Sima, J. L., Perkins, S. M., Haggstrom, D. A. 2014
Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care Szalda, D., Pierce, L., Hobbie, W., Ginsberg, J. P., Brumley, L., Wasik, M., Li, Y., Schwartz, L. A. 2016
Providing health care for patients with childhood cancer and survivors: A survey of pediatric primary care providers Wadhwa, A., Chen, Y., Bhatia, S., Landier, W. 2019
Health care concerns of rural childhood cancer survivors Warner, E. L., Montenegro, R. E., Stroup, A., Kinney, A. Y., Kirchhoff, A. C. 2014
Patterns and predictors of survivorship clinic attendance in a population-based sample of pediatric and young adult childhood cancer survivors Zheng, D. J., Sint, K., Mitchell, H. R., Kadan-Lottick, N. S. 2016
Communicating Health Information and Improving Coordination With Primary Care Center, Fred Hutchinson Cancer Research, Institute, National Cancer, Hospital, St. Jude Children's Research 2017
Feasibility of a Self-Management + Peer Mentoring Intervention for Adolescent and Young Adult Childhood Cancer Survivors Rutgers, The State University of New Jersey, Institute, National Cancer 2019
Education Tools to Support Pediatric Survivor Care University, Emory 2020
Improving paediatric cardiologists' awareness about the needs of childhood cancer survivors: results of a single-centre directed educational initiative Rose-Felker, K., Effinger, K., Kelleman, M. S., Sachdeva, R., Meacham, L. R., Border, W. L. 2019
Promoting Breast Cancer Surveillance: The EMPOWER Study, a Randomized Clinical Trial in the Childhood Cancer Survivor Study Oeffinger, K. C., Ford, J. S., Moskowitz, C. S., Chou, J. F., Henderson, T. O., Hudson, M. M., Diller, L., McDonald, A., Ford, J., Mubdi, N. Z., Rinehart, D., Vukadinovich, C., Gibson, T. M., Anderson, N., Elkin, E. B., Garrett, K., Rebull, M., Leisenring, W., Robison, L. L., Armstrong, G. T. 2019
Creation and evaluation of a cancer survivorship curriculum for pediatric resident physicians Schwartz, L. F., Braddock, C. H., 3rd, Kao, R. L., Sim, M. S., Casillas 2018
Development of a text messaging system to improve receipt of survivorship care in adolescent and young adult survivors of childhood cancer Casillas, Jacqueline, Goyal, Anju, Bryman, Jason, Alquaddoomi, Faisal, Ganz, Patricia, Lidington, Emma, Macadangdang, Joshua, Estrin, Deborah, Ganz, Patricia A. 2017
Attendance at a survivorship clinic: impact on knowledge and psychosocial adjustment Ford, Jennifer S., Chou, Joanne F., Sklar, Charles A. 2013
Building a National Framework for Adolescent and Young Adult Hematology and Oncology and Transition from Pediatric to Adult Care: Report of the Inaugural Meeting of the 'AjET' Working Group of the German Society for Pediatric Oncology and Hematology Escherich, Gabriele, Bielack, Stefan, Maier, Stephan, Braungart, Ralf, Brmmendorf, Tim H., Freund, Mathias, Grosse, Regine, Hoferer, Anette, Kampschulte, Rebecca, Koch, Barbara, Lauten, Melchior, Milani, Valeria, Ross, Henning, Schilling, Freimut, Whrle, Dieter, Cario, Holger, Dirksen, Uta 2017
Barriers to the Use of Psychosocial Support Services Among Adolescent and Young Adult Survivors of Pediatric Cancer Gardner, Molly H., Barnes, Margaux J., Bopanna, Shilpa, Davis, Caroline S., Cotton, Pat B., Heron, Bethany L., Henninger, Alison, Alva, Elizabeth, Gleason, Michael W., Whelan, Kimberly F., Madan-Swain, Avi 2014
After Childhood Cancer: a Qualitative Study of Family Physician, Parent/Guardian, and Survivor Information Needs and Perspectives on Long-Term Follow-up and Survivorship Care Plans Keats, Melanie R., Shea, Kelsey, Parker, Louise, Stewart, Samuel A., Flanders, Annette, Bernstein, Mark 2019
A study of childhood cancer survivors' engagement with long-term follow-up care: 'To attend or not to attend, that is the question' Knighting, Katherine, Kirton, Jennifer A., Thorp, Nicola, Hayden, James, Appleton, Lynda, Bray, Lucy 2020
Identifying Barriers Among Childhood Cancer Survivors Transitioning to Adult Health Care Quillen, Joanne, Bradley, Holli, Calamaro, Christina 2017
A comparison of two models of follow-up care for adult survivors of childhood cancer Reynolds, K., Spavor, M., Brandelli, Y., Kwok, C., Li, Y., Disciglio, M., Carlson, L. E., Schulte, F., Anderson, R., Grundy, P., Giese-Davis, J. 2019
The involvement of primary care physicians in care for childhood cancer survivors Streefkerk, Nina, Heins, Marianne J., Teepen, Jop C., Feijen, Elizabeth A. M., Bresters, Dorine, en Broeder, Eline, van der Loo, Margriet, Eibrink, Marry M., Leeuwen, Flora E., Loonen, Jacqueline J., er Pal, Helena J. H., Ronckers, Ccile M., Versluys, A. Birgitta, Tissing, Wim J. E., Korevaar, Joke C., Kremer, Leontien C. M., van Dulmen-den Broeder, Eline, van der Heiden-van der Loo, Margriet, van den Heuvel-Eibrink, Marry M., van Leeuwen, Flora E. 2019
Mental health needs of adult survivors of childhood cancer Mendoza, Jacqueline L., O'Callaghan, Erin T. 2018
Standards for Pediatric Cancer Centers American Academy of Pediatrics
Long-term follow-up guidelines International Guideline Harmonization Group
Impact of Tailored Education on Awareness of Personal Risk for Therapy-Related Complications Among Childhood Cancer Survivors Landier, W., Chen, Y., Namdar, G., Francisco, L., Wilson, K., Herrera, C., Armenian, S., Wolfson, J. A., Sun, C. L., Wong, F. L., Bhatia, S. 2015
Cancer survivorship practices, services, and delivery: a report from the Children's Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees Eshelman-Kent, D., Kinahan, K. E., Hobbie, W., Landier, W., Teal, S., Friedman, D., Nagarajan, R., Freyer, D. R. 2011
Survivorship, Version 2.2020, NCCN Clinical Practice Guidelines in Oncology Denlinger, C. S., Sanft, T., Armenian, S., Baker, K. S., Broderick, G., Demark-Wahnefried, W., Dickinson, K., Friedman, D. L., Goldman, M., Henry, N. L., Hill-Kayser, C., Hudson, M., Khakpour, N., Koura, D., McDonough, A. L., Melisko, M., Mooney, K., Moore, H., Moryl, N., Moslehi, J. J., O'Connor, T., Overholser, L., Paskett, E. D., Patel, C., Peterson, L., Pirl, W., Rodriguez, M. A., Ruddy, K. J., Shockney, L., Smith, S., Syrjala, K. L., Tevaarwerk, A., Zee, P., McMillian, N. R., Freedman-Cass, D. A. 2020
Long-term inpatient disease burden in the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study: A cohort study of 21,297 childhood cancer survivors e Fine Licht, S., Rugbjerg, K., Gudmundsdottir, T., Bonnesen, T. G., Asdahl, P. H., Holmqvist, A. S., Madanat-Harjuoja, L., Tryggvadottir, L., Wesenberg, F., Hasle, H., Winther, J. F., Olsen, J. H., group, A. LiCCS study 2017
Impact of shared care program in follow-up of childhood cancer survivors: An intervention study Ducassou, S., Chipi, M., Pouyade, A., Afonso, M., Demeaux, J. L., Ducos, G., Perel, Y., Ansoborlo, S. 2017
Experiences with the survivorship care plan in primary care providers of childhood cancer survivors: a mixed methods approach Iyer, N. S., Mitchell, H. R., Zheng, D. J., Ross, W. L., Kadan-Lottick, N. S. 2017
Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan Blaauwbroek, R., Barf, H. A., Groenier, K. H., Kremer, L. C., van der Meer, K., Tissing, W. J., Postma, A. 2012
Looking for trouble: Adherence to late-effects surveillance among childhood cancer survivors Reppucci, M. L., Schleien, C. L., Fish, J. D. 2017
The availability of insurance to long-time survivors of childhood cancer Holmes, G. E., Baker, A., Hassanein, R. S., Bovee, E. C., Mulvihill, J. J., Myers, M. H., Holmes, F. F. 1986
Therapy based long term follow up: practice statement: United Kingdom Childrens Cancer Study Group (Late Effects Group). 2nd ed. Skinner, R., Wallace, W.H., Levitt, G.A. 2005
Guidelines for follow-up after childhood cancer more than 5 years after diagnosis 2010
Establishing and Enhancing Services for Childhood Cancer Survivors: long-term follow-up program resource guide Children's Oncology Group 2007
Randomized Trial of the Impact of Empowering Childhood Cancer Survivors With Survivorship Care Plans Kadan-Lottick, N. S., Ross, W. L., Mitchell, H. R., Rotatori, J., Gross, C. P., Ma, X. 2018
Childhood Cancer Survivorship: Improving Care and Quality of Life Hewitt, M., Weiner, S. L., Simone, J. V. 2003
Peer Mentoring in Promoting Follow-up Care Self-Management in Younger Childhood Cancer Survivors Rutgers, The State University of New Jersey, Institute, National Cancer
Iterative Development of a Tailored mHealth Intervention for Adolescent and Young Adult Survivors of Childhood Cancer Schwartz, L.A., l., et 2019
Smart Adult Living After Childhood Cancer (SmartALACC) Online Care Plans: Feasibility and Patient Satisfaction Abramson Cancer Center of the University of Pennsylvania
Predictors of successful use of a web-based healthcare document storage and sharing system for pediatric cancer survivors: Cancer SurvivorLink Williamson, R., Meacham, L., Cherven, B., Hassen-Schilling, L., Edwards, P., Palgon, M., Espinoza, S., Mertens, A. 2014
Specialized survivor clinic attendance is associated with decreased rates of emergency department visits in adult survivors of childhood cancer Sutradhar, R., Agha, M., Pole, J. D., Greenberg, M., Guttmann, A., Hodgson, D., Nathan, P. C. 2015
Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study Denzler, S., Otth, M., Scheinemann, K. 2020
Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors Sadak, K. T., Gemeda, M. T., Grafelman, M., Neglia, J. P., Freyer, D. R., Harwood, E., Mikal, J. 2020
Increasing cardiomyopathy screening in at-risk adult survivors of pediatric malignancies: a randomized controlled trial Hudson, M. M., Leisenring, W., Stratton, K. K., Tinner, N., Steen, B. D., Ogg, S., Barnes, L., Oeffinger, K. C., Robison, L. L., Cox, C. L. 2014
Increasing rates of breast cancer and cardiac surveillance among high-risk survivors of childhood Hodgkin lymphoma following a mailed, one-page survivorship care plan Oeffinger, K. C., Hudson, M. M., Mertens, A. C., Smith, S. M., Mitby, P. A., Eshelman-Kent, D. A., Ford, J. S., Jones, J. K., Kamani, S., Robison, L. L. 2011
Surviving childhood cancer; now what? Controversies regarding long-term follow-up Goldsby, R. E., Ablin, A. R. 2004
Long-term follow-up of people who have survived cancer during childhood Skinner, R., Wallace, W. H., Levitt, G. A., Group, U. K. Children's Cancer Study Group Late Effects 2006
Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists Henderson, T. O., Hlubocky, F. J., Wroblewski, K. E., Diller, L., Daugherty, C. K. 2010
Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study Blaauwbroek, R., Tuinier, W., Meyboom-de Jong, B., Kamps, W. A., Postma, A. 2008
Comprehensive long-term follow-up programs for pediatric cancer survivors Aziz, N. M., Oeffinger, K. C., Brooks, S., Turoff, A. J. 2006
Preparing childhood cancer survivors for transition to adult care: The young adult perspective Frederick, N. N., Bober, S. L., Berwick, L., Tower, M., Kenney, L. B. 2017
Childhood Cancer Survivorship Proposal Children's Cancer Cause
Patient-Centered Care Strategies Cancer Leadership Council March 1, 2019
Long term follow up of survivors of childhood cancer-A national clinical guideline ., Scottish Intercollegiate Guidelines Network March 2013

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