Impact of Survivorship-Based Research on Defining Clinical Care Guidelines

Melissa M. Hudson; Wendy Landier; Patricia A. Ganz

doi:10.1158/1055-9965.EPI-11-0642

DOI: 10.1158/1055-9965.EPI-11-0642 Published October 2011

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Tables

Table 1.

Pediatric cooperative group^a strategies for development, implementation, dissemination, and maintenance of health screening guidelines for childhood cancer survivors


Establish aims and goals of guidelines	▪ Provide guidance to clinicians caring for survivors.
	▪ Standardize and enhance follow-up care of survivors.
	▪ Facilitate early identification of late treatment effects.
	▪ Promote timely intervention for late treatment effects.
	▪ Educate survivors and families about health risks.
	▪ Promote healthy lifestyle of survivors.
Define target population for screening	▪ By age at diagnosis (childhood, adolescent, young adult, and adult).
	▪ By time from completion of therapy (≥2 years, ≥5 years, etc…).
	▪ By disease status (maintained remission, stable disease, etc…).
Consider intended users of guidelines	▪ Hematology/oncology providers (pediatric/medical, surgical, radiation, nursing, etc…).
	▪ Primary care providers (pediatricians, family physicians, internist, and gynecologists).
	▪ Subspecialty providers (pediatric/medical, endocrine, cardiology, etc…).
	▪ Cancer survivors and families.
Identify expertise required to develop the guidelines	▪ Hematology/oncology (pediatric/medical, surgery, radiation, nursing, and transplant).
	▪ Primary care (pediatrics, family medicine, internal medicine, and gynecology).
	▪ Subspecialty (pediatric/medical, endocrine, cardiology, etc…).
	▪ Behavioral (psychology, social work).
	▪ Supportive care (physical/occupational therapy, etc…).
	▪ Patient/survivorship advocacy.
	▪ Analytical (epidemiology, biostatistics, and public health services).
Adopt guideline methodology	▪ Systematic review of evidence with assessment of methodologic quality of studies.
	▪ Translation of evidence and clinical experience into screening recommendations.
Determine preferred guideline design	▪ Therapy/exposure based
	▪ Outcome based (by organ, tissue, or function)
	▪ Disease based
Establish guideline content	▪ Address both medical and psychosocial outcomes.
	▪ Comprehensive versus selected key late effects.
	▪ Organization/venue of long-term follow-up care.
	▪ Provider versus survivor (patient education) format.
	▪ Treatment summary template.
	▪ Medical citations to support recommendations.
Implement and disseminate guidelines	▪ Posting on internet website.
	▪ Presentations at cooperative group and professional society meetings.
	▪ Presentations in academic and community forums.
	▪ Publication of review manuscripts.
	▪ Incorporation into primary care pathways.
	▪ Collaboration with health care and insurance organizations.
Organize plan to maintain currency of guidelines	▪ Ongoing monitoring of late effects literature.
Organize plan to maintain currency of guidelines	▪ Biennial systematic review by multidisciplinary task forces.
	▪ Consideration of guideline revisions by oversight committee.
	▪ International collaboration to harmonize recommendations.

↵^aGuidelines from the following Pediatric Cooperative Groups were reviewed for inclusion in this summary: Children's Oncology Group (COG; ref. 25), Children's Cancer and Leukemia Group (CCLG; ref. 23), Dutch Childhood Oncology Group (DCOG; ref. 26), and Scottish Intercollegiate Guidelines Network (SIGN; ref. 24).

Table 2.

Levels of long-term follow-up care^a for childhood cancer survivors

Risk of late effects	Proposed levels of follow-up care
Low	▪ Postal or telephone follow-up every 1 to 2 years.
Surgery only; low-risk chemotherapy (excluding alkylators, anthracyclines, bleomycin, and epipodophyllotoxins)	▪ Single visit with cancer center long-term follow-up program followed by ongoing monitoring by primary care provider, according to follow-up plan established by cancer center.
Moderate	▪ Follow-up every 1 to 2 years with nurse or primary care physician.
Other than high/low risk	▪ Initial follow-up at cancer center for 5 to 10 years, followed by transition to primary care provider, who carries out ongoing monitoring according to follow-up plan established by cancer center.
High	▪ Ongoing annual follow-up in specialized long-term follow-up program at cancer center.
Hematopoietic cell transplant; high-dose anthracyclines or alkylating agents; radiation ≥24 Gy