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Original Research |

General Internists’ Preferences and Knowledge About the Care of Adult Survivors of Childhood Cancer: A Cross-sectional Survey

Eugene Suh, MD; Christopher K. Daugherty, MD; Kristen Wroblewski, MS; Hannah Lee, MPH; Mackenzie L. Kigin, BA; Kenneth A. Rasinski, PhD; Jennifer S. Ford, PhD; Emily S. Tonorezos, MD; Paul C. Nathan, MD, MSc; Kevin C. Oeffinger, MD; and Tara O. Henderson, MD, MPH
[+] Article, Author, and Disclosure Information

From University of Chicago Medicine Comer Children's Hospital and University of Chicago, Chicago, Illinois; Memorial Sloan-Kettering Cancer Center, New York, New York; and The Hospital for Sick Children, Toronto, Ontario, Canada.

Acknowledgment: The authors thank the Lisa Klitzky Foundation and the Ted Mullin Fund.

Grant Support: By the National Cancer Institute (grant NIH K07CA134935, “Health Beliefs and Behaviors: Cohort Studies in Childhood Cancer Survivors,” awarded 1 September 2008 through 30 August 2012, to Dr. Henderson).

Potential Conflicts of Interest: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M13-1941.

Reproducible Research Statement: Study protocol: Survey instrument available from Dr. Henderson (e-mail, thenderson@peds.bsd.uchicago.edu). Statistical code and data set: Not available.

Requests for Single Reprints: Tara O. Henderson, MD, MPH, University of Chicago Medicine Comer Children's Hospital, Pediatric Hematology/Oncology and Stem Cell Transplantation, 5841 South Maryland Avenue, MC 4060, Chicago, IL 60637; e-mail, thenderson@peds.bsd.uchicago.edu.

Current Author Addresses: Dr. Suh: Loyola University Medical Center, 2160 South First Avenue, Maywood, IL 60153.

Dr. Daugherty: University of Chicago, Department of Medicine, 5841 South Maryland Avenue, MC 2115, Chicago, IL 60637.

Ms. Wroblewski: University of Chicago, Department of Health Studies, 5841 South Maryland Avenue, MC 2007, Chicago, IL 60637.

Ms. Lee: 3723A Oregon Court, Great Lakes, IL 60088.

Ms. Kigin: 3215 Grand Avenue Unit 10, Des Moines, IA 50312.

Dr. Rasinski: University of Chicago Pritzker School of Medicine, Department of Medicine, 5841 South Maryland Avenue, Chicago, IL 60637.

Dr. Ford: Department of Psychiatry and Behavioral Sciences, Department of Pediatrics Memorial Sloan-Kettering Cancer Center, 641 Lexington Avenue, 7th Floor, New York, NY 10022.

Dr. Tonorezos: Memorial Sloan-Kettering Cancer Center, Department of Medicine, 300 East 66th Street, New York, NY 10065.

Dr. Nathan: Hospital for Sick Children, Division of Hematology/Oncology, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada.

Dr. Oeffinger: Memorial Sloan-Kettering Cancer Center, Departments of Medicine and Pediatrics, 300 East 66th Street, Office 907, New York, NY 10065.

Dr. Henderson: University of Chicago Comer Children's Hospital, Pediatric Hematology/Oncology and Stem Cell Transplantation, 5841 South Maryland Avenue, MC 4060, Chicago, IL 60637.

Author Contributions: Conception and design: E. Suh, C.K. Daugherty, K.A. Rasinski, E.S. Tonorezos, K.C. Oeffinger, T.O. Henderson.

Analysis and interpretation of the data: E. Suh, C.K. Daugherty, K. Wroblewski, H. Lee, J.S. Ford, E.S. Tonorezos, K.C. Oeffinger, T.O. Henderson.

Drafting of the article: E. Suh, H. Lee, J.S. Ford, E.S. Tonorezos, T.O. Henderson.

Critical revision of the article for important intellectual content: E. Suh, C.K. Daugherty, K. Wroblewski, J.S. Ford, E.S. Tonorezos, P.C. Nathan, K.C. Oeffinger, T.O. Henderson.

Final approval of the article: E. Suh, C.K. Daugherty, K. Wroblewski, J.S. Ford, E.S. Tonorezos, P.C. Nathan, K.C. Oeffinger, T.O. Henderson.

Provision of study materials or patients: C.K. Daugherty, K.A. Rasinski, T.O. Henderson.

Statistical expertise: C.K. Daugherty, K.A. Rasinski, K. Wroblewski, T.O. Henderson.

Obtaining of funding: T.O. Henderson.

Administrative, technical, or logistic support: C.K. Daugherty, H. Lee, M.L. Kigin, K.A. Rasinski, T.O. Henderson.

Collection and assembly of data: E. Suh, C.K. Daugherty, H. Lee, M.L. Kigin, T.O. Henderson.

Ann Intern Med. 2014;160(1):11-17. doi:10.7326/M13-1941
Text Size: A A A

Background: Adult childhood cancer survivors (CCSs) are at high risk for illness and premature death. Little is known about the physicians who provide their routine medical care.

Objective: To determine general internists’ self-reported attitudes and knowledge about the care of CCSs.

Design: Cross-sectional survey.

Setting: Mailed survey delivered between September 2011 and August 2012.

Participants: Random sample of 2000 U.S. general internists.

Measurements: Care preferences, comfort levels with caring for CCSs (7-point Likert scale: 1 = very uncomfortable, 7 = very comfortable), familiarity with available surveillance guidelines (7-point Likert scale: 1 = very unfamiliar, 7 = very familiar), and concordance with Children's Oncology Group Long-Term Follow-Up Guidelines in response to a clinical vignette.

Results: The response rate was 61.6% (1110 of 1801). More than half the internists (51.1%) reported caring for at least 1 CCS; 72.0% of these internists never received a treatment summary. On average, internists were “somewhat uncomfortable” caring for survivors of Hodgkin lymphoma, acute lymphoblastic leukemia, and osteosarcoma. Internists reported being “somewhat unfamiliar” with available surveillance guidelines. In response to a clinical vignette about a young adult survivor of Hodgkin lymphoma, 90.6% of respondents did not appropriately recommend yearly breast cancer surveillance, 85.1% did not appropriately recommended cardiac surveillance, and 23.6% did not appropriately recommend yearly thyroid surveillance. Access to surveillance guidelines and treatment summaries were identified as the most useful resources for caring for CCSs.

Limitation: Findings, based on self-report, may not reflect actual clinical practice.

Conclusion: Although most general internists report involvement in the care of CCSs, many seem unfamiliar with available surveillance guidelines and would prefer to follow patients in collaboration with a cancer center.

Primary Funding Source: National Cancer Institute.


Grahic Jump Location
Appendix Figure.

Study flow diagram.

AMA = American Medical Association.

Grahic Jump Location




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Is a general practitioner the right answer to the needs of childhood cancer survivors?
Posted on January 26, 2014
Marco Gallo MD, Francesco Felicetti MD, Enrico Brignardello MD
Transition Unit for Childhood Cancer Survivors and Oncological Endocrinology Unit - Department of Oncology, AOU Città della Salute e della Scienza – Turin, Italy
Conflict of Interest: None Declared
We read with great interest both the article by Suh and colleagues (1) and the accompanying editorial by Szalda and Ginsberg (2), concerning long-term follow-up care of childhood cancer survivors (CCSs). Despite continuous efforts to reduce the late effects of anti-cancer therapies, treatment doesn't simply end after chemotherapy is complete (3). The late effects of cancer therapies are often under-diagnosed or missed, likely due to the shortage of specialized centers and to lack of training among general practitioners. In Italian centers, the presence of a specialized follow-up clinic is still limited to only a few tertiary cancer centers. Even in these specialized centers, the long-term follow-up of CCSs is often carried out by the same pediatric oncologists who followed the patient during the acute phase of the disease.
We have obtained encouraging results from our experience in an adult-focused follow-up clinic within the cancer center. The clinic is headed by an internist/endocrinologist and we have an organized network of specialists working together as a multidisciplinary team. Upon reaching adulthood, the survivor is transitioned to the adult health care team by the pediatric oncologist, who provides a comprehensive summary of the patient’s cancer diagnosis, treatment course, and complications (4). While this process requires certain expertise, it is fundamental to generate individualized and proactive plans of care, and we find that it helps to overcome the reluctance of CCSs (and their parents) to leave the pediatric center and accept willingly the transition to the adult care setting.
We agree with the authors that CCSs are relatively underserved patients, and part of the issue is that there is not adequate exposure in medical school and post-graduate training. However, even if properly trained primary care practitioners are available, the system still may not be sufficient to meet the various need of this population. Long-term follow-up of CCSs will be spread among general practitioners, and therefore each of them will only care for a few patients over his/her career. This will translate into a limited experience and potentially a low interest in this endeavor. Moreover, it will be clearly difficult for general practitioners to get the multidisciplinary approach and infrastructure in place that is needed to care for CCSs.
Therefore we agree with Tirelli and colleagues (5), who recently stated that it would be much better, although more costly, to develop CCSs clinics within the department of oncology of the major cancer hospitals.

1. Suh E, Daugherty CK, Wroblewski K, Lee H, Kigin ML, Rasinski KA, et al. General internists’ preferences and knowledge about the care of adult survivors of childhood cancer. A cross-sectional survey. Ann Intern Med. 2014;160:11-7.
2. Szalda D, Ginsberg JP. The Adult Childhood Cancer Survivor and the General Internist: Suggestions for Patient and Provider Education. Ann Intern Med. 2014;160:66-67.
3. It doesn't stop at cure: monitoring childhood cancer survivors. Lancet Oncol. 2013; 14:671.
4. Brignardello E, Felicetti F, Castiglione A, Chiabotto P, Corrias A, Fagioli F et al. Endocrine health conditions in adult survivors of childhood cancer: the need for specialized adult-focused follow-up clinics. Eur J Endocrinol. 2013;168:465-72.
5. Tirelli U, Spina M, Augello AF, Berretta M, Annunziata MA, Bongiovanni M. Is It Better to Transfer Long-Term Cancer Survivors to General Practitioner or Develop Clinics for Long-Term Survivors Within the Cancer Centers? J Clin Oncol. 2013 Dec 2. [Epub ahead of print]
Optimal care for childhood cancer survivors - primary care physicians or specialized units?
Posted on February 4, 2014
Joanna Sulicka, MD, PhD
Jagiellonian University Medical College
Conflict of Interest: None Declared

In the study of Suh et al. (1)many general internists involved in the care of childhood cancer survivors seemed unfamiliar with available surveillance guidelines and “uncomfortable” caring for particular groups of cancer survivors which is probably related to relative paucity of those patients in primary care practice. However, flawless transition from Child Cancer Clinic after completion of treatment and regular follow-up by health care providers is crucial as early detection of complications may reduce morbidity and mortality later in adulthood and improve quality of life of cancer survivors. The great majority of these patients are being followed by primary care physicians and only 30% receive specialized care related to former cancer treatment.(2)
A possible alternative to general practitioners caring solely for adult childhood cancer survivors might be a shared care model based on cooperation between the pediatric oncology center, outpatient adult survivors clinic and adult oncologist.
Our experience is based on three years of follow-up of more than 160 adult survivors of childhood malignancy treated in the University Children Hospital. All survivors over 18 years of age are informed about the need of further follow-up and offered consultation in the specialized unit established in the University Hospital. Patients are being followed in the outpatient clinic by the general internist using Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancer (LFTU) in cooperation with the pediatric oncologists who treated the patients previously. Since the establishment of our unit in 2011 more than 90% of those who initially were referred for the consultation are now being followed-up according to the LFTU guidelines.(3)

Thus regional adult cancer survivors clinics, such as our center in the University Hospital in Cracow where there is intense collaboration between specialists familiar with the late effects of cancer treatment will improve long-term follow up for survivors and provide flawless transition from Pediatric Oncology Department.

(1) Suh E, Daugherty CK, Wroblewski K, Lee H, Kigin ML, et al. General Internists’ Preferences and Knowledge About the care of Adult Survivors of Childhood Cancer. Ann Intern Med. 2014;160:11-17
(2) Nathan PC, Greenberg ML, Ness KK, Hudson Mm, Martens AC, Mahoney MC, et al. Medical care in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivors Study. J Clin Oncol. 2008;26:4401-4409
(3) Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancer. Version 3.0. www.survivorshipguidelines.org

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