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Guideline Summary
Guideline Title
Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Sections 107-132: surgery.
Bibliographic Source(s)
Children's Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Sections 107-132: surgery. Bethesda (MD): Children's Oncology Group; 2008 Oct. 28 p. [134 references]
Guideline Status

This is the current release of the guideline.

This guideline updates a previous version: Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Sections 107-132: surgery. In: Children's Oncology Group. Bethesda (MD): Children's Oncology Group; 2006 Mar. p. 26. [110 references]

Jump ToGuideline ClassificationRelated Content

Scope

Disease/Condition(s)

Late effects resulting from surgery to treat pediatric malignancies

Effects include complications from amputation, cystectomy, enucleation, hysterectomy, laparotomy, limb sparing procedure, nephrectomy, brain or spinal cord surgery, female or male reproductive surgery, splenectomy, thyroidectomy, pelvic or pulmonary surgery and use of a central venous catheter.

Note: "Late effects" are defined as therapy-related complications or adverse effects that persist or arise after completion of treatment for a pediatric malignancy. "Pediatric malignancies" are defined as those malignancies commonly associated with the pediatric population that may arise during childhood, adolescence or young adulthood.

Guideline Category
Evaluation
Management
Prevention
Risk Assessment
Screening
Clinical Specialty
Cardiology
Colon and Rectal Surgery
Endocrinology
Family Practice
Gastroenterology
Internal Medicine
Nephrology
Neurological Surgery
Neurology
Obstetrics and Gynecology
Oncology
Ophthalmology
Orthopedic Surgery
Pediatrics
Physical Medicine and Rehabilitation
Plastic Surgery
Psychiatry
Psychology
Pulmonary Medicine
Surgery
Urology
Intended Users
Advanced Practice Nurses
Nurses
Occupational Therapists
Physical Therapists
Physician Assistants
Physicians
Psychologists/Non-physician Behavioral Health Clinicians
Social Workers
Guideline Objective(s)
  • To provide recommendations for screening and management of late effects in survivors of pediatric malignancies
  • To increase quality of life and decrease complication-related healthcare costs for pediatric cancer survivors by providing standardized and enhanced follow-up care throughout the life-span that (a) promotes healthy lifestyles, (b) provides for ongoing monitoring of health status, (c) facilitates early identification of late effects, and (d) provides timely intervention for late effects
Target Population

Asymptomatic survivors of childhood, adolescent, or young adult cancers who were treated surgically and who present for routine exposure-related medical follow-up

Interventions and Practices Considered

Thorough history and physical examination, and targeted screening evaluations

Major Outcomes Considered

Therapy-related complications or adverse effects that persist or arise after completion of treatment for a pediatric malignancy

Methodology

Methods Used to Collect/Select the Evidence
Hand-searches of Published Literature (Primary Sources)
Hand-searches of Published Literature (Secondary Sources)
Searches of Electronic Databases
Description of Methods Used to Collect/Select the Evidence

Pertinent information from the published medical literature over the past 20 years (updated as of October 2008) was retrieved and reviewed during the development and updating of these guidelines. For each therapeutic exposure, a complete search was performed via MEDLINE (National Library of Medicine, Bethesda, MD). Keywords included "childhood cancer therapy," "complications," and "late effects," combined with keywords for each therapeutic exposure. References from the bibliographies of selected articles were used to broaden the search.

Number of Source Documents

Not stated

Methods Used to Assess the Quality and Strength of the Evidence
Expert Consensus (Committee)
Weighting According to a Rating Scheme (Scheme Given)
Rating Scheme for the Strength of the Evidence
  • "High-level evidence" was defined as evidence derived from high quality case control or cohort studies.
  • "Lower-level evidence" was defined as evidence derived from non-analytic studies, case reports, case series, and clinical experience.
Methods Used to Analyze the Evidence
Systematic Review with Evidence Tables
Description of the Methods Used to Analyze the Evidence

The guidelines were scored by the multidisciplinary panel of experts using a modified version of the National Criteria: Comprehensive Cancer Network "Categories of Consensus" system. Each score reflects the expert panel's assessment of the strength of data from the literature linking a specific late effect with a therapeutic exposure, coupled with an assessment of the appropriateness of the screening recommendation based on the expert panel's collective clinical experience. "High-level evidence" (category 1) was defined as evidence derived from high quality case control or cohort studies. "Lower-level evidence" (categories 2A and 2B) was defined as evidence derived from non-analytic studies, case reports, case series and clinical experience. Rather than submitting recommendations representing major disagreements, items scored as "Category 3" were either deleted or revised by the panel of experts to provide at least a "Category 2B" score for all recommendations included in the guidelines.

Methods Used to Formulate the Recommendations
Expert Consensus
Description of Methods Used to Formulate the Recommendations

In 2002, the leadership of the Children's Oncology Group (COG) Late Effects Committee and Nursing Discipline appointed a 7-member task force, with representation from the Late Effects Committee, Nursing Discipline, and Patient Advocacy Committee. The task force was convened to review and summarize the medical literature and develop a draft of clinical practice guidelines to direct long-term follow-up care for pediatric cancer survivors. The task force followed a modified version of the guideline development process established by the National Comprehensive Cancer Network (NCCN), integrating available literature with expert opinion using reiterative feedback loops.

The original draft went through several iterations within the task force prior to initial review. Multidisciplinary experts in the field, including nurses, physicians (pediatric oncologists and other subspecialists), patient advocates, behavioral specialists, and other healthcare professionals, were then recruited by the task force to provide an extensive, targeted review of the draft, including focused review of selected guideline sections. Revisions were made based on these recommendations. The revised draft was then sent out to additional multidisciplinary experts for further review. A total of 62 individuals participated in the review process. The guidelines subsequently underwent comprehensive review and scoring by a panel of experts in the late effects of pediatric malignancies, comprised of multidisciplinary representatives from the COG Late Effects Committee.

Revisions

In order to keep the guidelines current and clinically meaningful, the COG Late Effects Committee organized 18 multi-disciplinary task forces in March 2004. These task forces were charged with the responsibility for monitoring the medical literature in regard to specific system-related clinical topics relevant to the guidelines (e.g., cardiovascular, neurocognitive, fertility/reproductive), providing periodic reports to the Late Effects Committee, and recommending revisions to the guidelines and their associated health education materials and references (including the addition of therapeutic exposures) as new information became available. Task force members were assigned according to their respective areas of expertise and clinical interest. A list of these task forces and their membership is included in the "Contributors" section of the original guideline document. The revisions incorporated into the previous (Version 2.0 – March 2006) and current (Version 3.0 – October 2008) release of these guidelines reflect the contributions and recommendations of these task forces.

All revisions proposed by the task forces were evaluated by a panel of experts, and if accepted, assigned a score (see "Rating Scheme for the Strength of the Evidence"). Proposed revisions that were rejected by the expert panel were returned with explanation to the relevant task force chair. If desired, task force chairs were given an opportunity to respond by providing additional justification and resubmitting the rejected task force recommendation(s) for further consideration by the expert panel. A total of 34 sections and 9 Health Links were added to Version 2.0 of these guidelines.

Rating Scheme for the Strength of the Recommendations

Each score relates to the strength of the association of the identified late effect with the specific therapeutic exposure based on current literature, and is coupled with a recommendation for periodic health screening based on the collective clinical experience of the panel of experts. This is due to the fact that there are no randomized clinical trials (and none forthcoming in the foreseeable future) on which to base recommendations for periodic screening evaluations in this population; therefore, the guidelines should not be misconstrued as representing conventional "evidence-based clinical practice guidelines" or "standards of care."

Each item was scored based on the level of evidence currently available to support it. Scores were assigned according to a modified version of the National Comprehensive Cancer Network "Categories of Consensus," as follows:

Category Statement of Consensus
1 There is uniform consensus of the panel that (1) there is high-level evidence linking the late effect with the therapeutic exposure, and (2) the screening recommendation is appropriate based on the collective clinical experience of panel members.
2A There is uniform consensus of the panel that (1) there is lower-level evidence linking the late effect with the therapeutic exposure, and (2) the screening recommendation is appropriate based on the collective clinical experience of panel members.
2B There is non-uniform consensus of the panel that (1) there is lower-level evidence linking the late effect with the therapeutic exposure, and (2) the screening recommendation is appropriate based on the collective clinical experience of panel members.
3 There is major disagreement that the recommendation is appropriate.

Uniform consensus: Near-unanimous agreement of the panel with some possible neutral positions.
Non-uniform consensus: The majority of panel members agree with the recommendation; however, there is recognition among panel members that, given the quality of evidence, clinicians may choose to adopt different approaches.
High-level evidence: Evidence derived from high quality case control or cohort studies.
Lower-level evidence: Evidence derived from non-analytic studies, case reports, case series, and clinical experience.

Cost Analysis

A formal cost analysis was not performed and published cost analyses were not reviewed.

Method of Guideline Validation
External Peer Review
Internal Peer Review
Description of Method of Guideline Validation

The initial version of the guidelines (Version 1.0 – Children's Oncology Group Late Effects Screening Guidelines) was released to the Children's Oncology Group (COG) membership in March 2003 for a six-month trial period. This allowed for initial feedback from the COG membership, resulting in additional review and revision of the guidelines by the Late Effects Committee prior to public release.

Revisions

All revisions proposed by the task forces were evaluated by a panel of experts, and if accepted, assigned a score (see "Rating Scheme for the Strength of the Evidence"). Proposed revisions that were rejected by the expert panel were returned with explanation to the relevant task force chair. If desired, task force chairs were given an opportunity to respond by providing additional justification and resubmitting the rejected task force recommendation(s) for further consideration by the expert panel.

Recommendations

Major Recommendations

Grades of recommendations (1, 2A, 2B, 3) are defined at the end of the "Major Recommendations" field.

Note from the Children's Oncology Group and the National Guideline Clearinghouse (NGC): The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers (COG LTFU) are organized according to therapeutic exposures; this guideline has been divided into individual summaries. In addition to the current summary, the following are available:

In order to accurately derive individualized screening recommendations for a specific childhood cancer survivor using this guideline, see "Using the COG LTFU Guidelines to Develop Individualized Screening Recommendations" in the original guideline document External Web Site Policy. (Note: For ease of use, a Patient-Specific Guideline Identification Tool has been developed to streamline the process and is included in Appendix I External Web Site Policy of the original guideline document.)

Guideline Organization

The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers are organized according to therapeutic exposures, arranged by column as follows:

System Body system (e.g., auditory, musculoskeletal) most relevant to each guideline section.
Score Score assigned by expert panel representing the strength of data from the literature linking a specific late effect with a therapeutic exposure coupled with an assessment of the appropriateness of the screening recommendation based on collective clinical experience.
Section Number Unique identifier for each guideline section.
Therapeutic Agent Therapeutic intervention for malignancy, including chemotherapy, radiation, surgery, blood/serum products, hematopoietic cell transplant, and other therapeutic modalities.
Potential Late Effects Most common late treatment complications associated with specified therapeutic intervention.
Risk Factors Host factors (e.g., age, sex, race, genetic predisposition), treatment factors (e.g., cumulative dose of therapeutic agent, mode of administration, combinations of agents), medical conditions (e.g., pre-morbid or co-morbid conditions), and health behaviors (e.g., diet, smoking, alcohol use) that may increase risk of developing the complication.
Highest Risk Factors Conditions (host factors, treatment factors, medical conditions and/or health behaviors) associated with the highest risk for developing the complication.
Periodic Evaluations Recommended screening evaluations, including health history, physical examination, laboratory evaluation, imaging, and psychosocial assessment. Recommendation for minimum frequency of periodic evaluations is based on risk factors and magnitude of risk, as supported by the medical literature and/or the combined clinical experience of the reviewers and panel of experts.
Health Counseling/
Further Considerations
Health Links: Health education materials developed specifically to accompany these guidelines. Title(s) of Health Link(s) relevant to each guideline section are referenced in this column. Health Link documents are included in Appendix II External Web Site Policy of the original guideline document.
Counseling: Suggested patient counseling regarding measures to prevent/reduce risk or promote early detection of the potential treatment complication.
Resources: See the original guideline document for lists of books and websites that may provide the clinician with additional relevant information.
Considerations for Further Testing and Intervention: Recommendations for further diagnostic evaluations beyond minimum screening for individuals with positive screening tests, recommendations for consultation and/or referral, and recommendations for management of exacerbating or predisposing conditions.
References References are listed immediately following each guideline section in the original guideline document. Included are medical citations that provide evidence for the association of the therapeutic intervention with the specific treatment complication and/or evaluation of predisposing risk factors. In addition, some general review articles have been included in the Reference section of the original guideline document for clinician convenience.

Note: See the end of the "Major Recommendations" field for explanations of abbreviations included in the summary.

Amputation

System = Musculoskeletal
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
107

Amputation

Amputation-related complications

Impaired cosmesis
Functional and activity limitations
Residual limb integrity problems
Phantom pain
Neuropathic pain
Musculoskeletal pain
Increased energy expenditure
Impaired quality of life and functional status
Psychological maladjustment

Host Factors

Skeletally immature/growing children

Treatment Factors

Site of amputation: Hemipelvectomy

  • Trans-femur amputation
  • Trans-tibia amputation

Medical Conditions

Obesity
Diabetes
Poor residual limb healing

 

History

Phantom pain
Functional and activity limitations

Yearly

Physical

Residual limb integrity

Yearly

Screening

Prosthetic evaluation

Every 6 months until skeletally mature, then yearly

Health Links (see "Patient Resources" field)

Amputation

Counseling

Counsel regarding skin checks, signs of poor prosthetic fit, residual limb and prosthetic hygiene, physical fitness, and importance of maintaining a healthy weight and lifestyle.

Considerations for Further Testing and Intervention

Physical therapy consultation as needed per changing physical status such as weight gain or gait training with a new prosthesis, and for non-pharmacological pain management. Occupational therapy consultation as needed to assist with activities of daily living. Psychological/social work consultation to assist with emotional difficulties related to body image, marriage, pregnancy, parenting, employment, insurance and depression. Vocational counseling/training to identify vocations that will not produce/exacerbate functional limitations.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Central Venous Catheter

System = Cardiovascular
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
108

Central venous catheter

Thrombosis
Vascular insufficiency
Infection of retained cuff or line tract

   

History

Tenderness or swelling at previous catheter site

Yearly and as clinically indicated

Physical

Venous stasis
Swelling
Tenderness at previous catheter site

Yearly and as clinically indicated

 

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Cystectomy

System = Urinary
Score =

Chronic urinary tract infection: 1
Renal dysfunction: 1
Vesicoureteral reflux: 1
Hydronephrosis: 1
Spontaneous neobladder perforation: 1
Reservoir calculi: 2A
Vitamin B12/folate/carotene deficiency: 2B

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
109

Cystectomy

Info Link: All potential late effects for pelvic surgery apply to Cystectomy (see also sections 126-129, below).

Cystectomy-related complications

Chronic urinary tract infection
Renal dysfunction
Vesicoureteral reflux
Hydronephrosis
Reservoir calculi
Spontaneous neobladder perforation
Vitamin B12/folate/carotene deficiency (patients with ileal enterocystoplasty only)

Info Link: Reservoir calculi are stones in the neobladder (a reservoir for urine usually constructed of ileum/colon)

   

Screening

Urology evaluation

Yearly

Vitamin B12 level

Yearly starting 5 years after cystectomy (patients with ileal enterocystoplasty only)

Health Links (see "Patient Resources" field)

Cystectomy
Kidney Health

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Enucleation

System = Ocular
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
110

Enucleation

Impaired cosmesis
Poor prosthetic fit
Orbital hypoplasia

Host Factors

Younger age at enucleation

Treatment Factors

Combined with radiation

 

Screening

Evaluation by ocularist
Evaluation by ophthalmologist

Yearly

Health Links (see "Patient Resources" field)

Eye Health

Considerations for Further Testing and Intervention

Psychological consultation in patients with emotional difficulties related to cosmetic and visual impairment. Vocational rehabilitation referral as indicated.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Hysterectomy

System = Reproductive (Female)
Score = 2A

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
111
Female

Hysterectomy

Info Link: For patients who also underwent oophorectomy, see also: Section 123 (unilateral oophorectomy) or Section 124 (bilateral oophorectomy), below

Pelvic floor dysfunction
Urinary incontinence
Sexual dysfunction

   

History

Psychosocial assessment
Abdominal pain
Urinary leakage
Dyspareunia

Yearly

Health Links (see "Patient Resources" field)

Female Health Issues

Counseling

Counsel patients with ovaries regarding potential for biologic parenthood using gestational surrogate.

Considerations for Further Testing and Intervention

Reproductive endocrinology consultation for patients wishing to pursue pregnancy via gestational surrogate.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Laparotomy

System = GI/Hepatic
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
112

Laparotomy

Adhesions
Bowel obstruction

Treatment Factors

Combined with radiation

 

History

Abdominal pain
Distention
Vomiting
Constipation

With clinical symptoms of obstruction

Physical

Tenderness
Abdominal guarding
Distension

With clinical symptoms of obstruction

Health Links (see "Patient Resources" field)

Gastrointestinal Health

Considerations for Further Testing and Intervention

KUB as clinically indicated for suspected obstruction. Surgical consultation for patients unresponsive to medical management.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Limb Sparing Procedure

System = Musculoskeletal
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
113

Limb sparing procedure

Complications related to limb sparing procedure

Functional and activity limitations
Contractures
Chronic infection
Chronic pain
Limb length discrepancy
Musculoskeletal pain
Increased energy expenditure
Fibrosis
Prosthetic malfunction (loosening, non-union, fracture) requiring revision, replacement, or amputation
Prosthetic revision required due to growth
Impaired quality of life
Complications with pregnancy/delivery (in female patients with internal hemipelvectomy)

Host Factors

Younger age at surgery
Rapid growth spurt
Skeletally immature

Treatment Factors

Tibial endoprosthesis
Use of biologic material (allograft or autograft) for reconstruction

Medical Conditions

Endoprosthetic infection
Obesity

Health Behaviors

High level of physical activity (associated with higher risk of loosening)
Low level of physical activity (associated with higher risk of contractures or functional limitations)

Treatment Factors

Radiation to extremity

Medical Conditions

Poor healing
Infection of reconstruction

History

Functional and activity limitations

Yearly and as clinically indicated

Physical

Residual limb integrity

Yearly and as clinically indicated

Screening

Radiograph of affected limb

Yearly

Evaluation by orthopedic surgeon

Every 6 months until skeletally mature, then yearly

Health Links (see "Patient Resources" field)

Limb Sparing Procedures

Counseling

Counsel regarding need for antibiotic prophylaxis prior to dental and invasive procedures, if applicable.

Considerations for Further Testing and Intervention

Antibiotics may be indicated prior to dental or invasive procedures depending on length of time since surgery, current immune status, history of previous infections, and other factors see ADA and AAOS (J Am Dent Assoc., 2003,134:895-899). Physical therapy consultation as needed per changes in functional status (such as post-lengthening, revisions, life changes such as pregnancy), and for non-pharmacological pain management. Consider psychological consultation as needed to assist with emotional difficulties related to body image, marriage, pregnancy, parenting, employment, insurance and depression. Vocational counseling/training to identify vocations that will not produce/exacerbate functional limitations.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Nephrectomy

System = Urinary
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
114
Male

Nephrectomy

Renal toxicity

Proteinuria
Hyperfiltration
Renal insufficiency

Hydrocele

Info Link: Surgery-induced renal atrophy (vanishing kidney) is a rare complication reported in survivors who have undergone retroperitoneal tumor resections. Once this diagnosis is established, annual screening should include evaluations recommended for children treated with nephrectomy.

Host Factors

Denys-Drash syndrome
WAGR syndrome
Hypospadias
Cryptorchidism
Bilateral Wilms tumor

Treatment Factors

Combined with other nephrotoxic therapy, such as:

  • Cisplatin
  • Carboplatin
  • Ifosfamide
  • Aminoglycosides
  • Amphotericin
  • Immunosuppressants
  • Methotrexate
  • Radiation impacting the kidneys
 

Physical

Blood pressure
Testicular exam to evaluate for hydrocele

Yearly

Screening

BUN
Creatinine
Na, K, Cl, CO2
Ca, Mg, PO4

Baseline at entry into long-term follow-up. Repeat as clinically indicated.

Urinalysis

Yearly

Health Links (see "Patient Resources" field)

Single Kidney Health
See also: Kidney Health

Counseling

Discuss contact sports, bicycle safety (e.g., avoiding handlebar injuries), and proper use of seatbelts (i.e., wearing lapbelts around hips, not waist). Counsel to use NSAIDs with caution.

Considerations for Further Testing and Intervention

Nephrology consultation for patients with hypertension, proteinuria, or progressive renal insufficiency.

114
Female

Nephrectomy

Renal toxicity

Proteinuria
Hyperfiltration
Renal insufficiency

Info Link: Surgery-induced renal atrophy (vanishing kidney) is a rare complication reported in survivors who have undergone retroperitoneal tumor resections. Once this diagnosis is established, annual screening should include evaluations recommended for children treated with nephrectomy.

Host Factors

Denys-Drash syndrome
WAGR syndrome
Bilateral Wilms tumor

Treatment Factors

Combined with other nephrotoxic therapy, such as:

  • Cisplatin
  • Carboplatin
  • Ifosfamide
  • Aminoglycosides
  • Amphotericin
  • Immunosuppressants
  • Methotrexate
  • Radiation impacting the kidneys
 

Physical

Blood pressure

Yearly

Screening

BUN
Creatinine
Na, K, Cl, CO2
Ca, Mg, PO4

Baseline at entry into long-term follow-up. Repeat as clinically indicated.

Urinalysis

Yearly

Health Links (see "Patient Resources" field)

Single Kidney Health
See also: Kidney Health

Counseling

Discuss contact sports, bicycle safety (e.g., avoiding handlebar injuries), and proper use of seatbelts (i.e., wearing lapbelts around hips, not waist). Counsel to use NSAIDs with caution.

Considerations for Further Testing and Intervention

Nephrology consultation for patients with hypertension, proteinuria, or progressive renal insufficiency.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Neurosurgery – Brain

System = CNS
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
115

Neurosurgery - Brain

Neurocognitive deficits

Functional deficits in:

  • Executive function (planning and organization)
  • Sustained attention
  • Memory (particularly visual, sequencing, temporal memory)
  • Processing speed
  • Visual-motor integration

Learning deficits in math and reading (particularly reading comprehension)
Diminished IQ
Behavioral change

Info Link: Neurocognitive deficits vary with extent of surgery and postoperative complications. In general, mild delays occur in most areas of neuropsychological function compared to healthy children. Extent of deficit depends on age at treatment, intensity of treatment, and time since treatment. New deficits may emerge over time. Neurosensory deficits (i.e., vision, hearing) due to tumor or its therapy may complicate neurocognitive outcomes.

Host Factors

Younger age at treatment
Primary CNS tumor

Treatment Factors

Extent and location of resection
Longer elapsed time since therapy
In combination with:

  • TBI
  • Cranial radiation
  • Methotrexate (IT, IO, high-dose IV)
  • Cytarabine (high-dose IV)

Host Factors

Age <3 years at time of treatment
Supratentorial tumor
Predisposing family history of learning or attention problems

Treatment Factors

Radiation dose ≥24 Gy to whole brain
Radiation dose ≥40 Gy to local fields

Medical Conditions

Posterior fossa syndrome
CNS infection

History

Educational and/or vocational progress

Yearly

Screening

Referral for formal neuropsychological evaluation

Baseline at entry into long-term follow-up. Periodically as clinically indicated for patients with evidence of impaired educational or vocational progress.

Health Links (see "Patient Resources" field)

Educational Issues

Considerations for Further Testing and Intervention

Formal neuropsychological evaluation to include tests of processing speed, computer-based attention, visual motor integration, memory, comprehension of verbal instructions, verbal fluency, executive function and planning. Refer patients with neurocognitive deficits to school liaison in community or cancer center (psychologist, social worker, school counselor) to facilitate acquisition of educational resources and/or social skills training. Consider use of psychotropic medication (e.g., stimulants) or evidence-based rehabilitation training. Caution - lower starting dose and assessment of increased sensitivity when initiating therapy is recommended. Refer to community services for vocational rehabilitation or for services for developmentally disabled.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

System = CNS
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
116

Neurosurgery - Brain

Motor and/or sensory deficits

Paralysis
Movement disorders
Ataxia
Eye problems (ocular nerve palsy, gaze paresis, nystagmus, papilledema, optic atrophy)

Host Factors

Primary CNS tumor

Medical Conditions

Hydrocephalus

Host Factors

Optic pathway tumor
Hypothalamic tumor
Suprasellar tumor (eye problems)

Screening

Evaluation by neurologist

Yearly, until 2 to 3 years after surgery or stable; continue to monitor if symptoms persist

Evaluation by physiatrist/rehabilitation medicine specialist

Yearly, or more frequently as clinically indicated in patients with motor dysfunction

Considerations for Further Testing and Intervention

Speech, physical, and occupational therapy in patients with persistent deficits. Consider consultations with nutrition, endocrine, and psychiatry (for obsessive-compulsive behaviors) in patients with hypothalamic-pituitary axis tumors. Ophthalmology evaluation as clinically indicated.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

System = CNS
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
117

Neurosurgery - Brain

Seizures

Host Factors

Primary CNS tumor

Treatment Factors

Methotrexate (IV, IT, IO)

 

Screening

Evaluation by neurologist

Every 6 months for patients with seizure disorder

 

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

System = CNS
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
118

Neurosurgery - Brain

Hydrocephalus
Shunt malfunction

Host Factors

Primary CNS tumor

 

Screening

Abdominal x-ray

After pubertal growth spurt for patients with shunts to assure distal shunt tubing in peritoneum

Evaluation by neurosurgeon

Yearly for patients with shunts

Counseling

Educate patient/family regarding potential symptoms of shunt malfunction.

Considerations for Further Testing and Intervention

Per the American Academy of Pediatric Dentistry endocarditis prophylaxis guidelines, antibiotics are not indicated prior to dental work for patients with V-P shunts (indicated for V-A and V-V shunts only).

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Neurosurgery – Spinal Cord

System = CNS
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
119

Neurosurgery - Spinal cord

Neurogenic bladder
Urinary incontinence

Host Factors

Tumor adjacent to or compressing spinal cord or cauda equina

Treatment Factors

Radiation dose ≥45 Gy to lumbar and/or sacral spine and/or cauda equina

Host Factors

Injury above the level of the sacrum

Treatment Factors

Radiation dose ≥50 Gy to lumbar and/or sacral spine and/or cauda equina

History

Hematuria
Urinary urgency/frequency
Urinary incontinence/retention
Dysuria
Nocturia
Abnormal urinary stream

Yearly

Health Links (see "Patient Resources" field)

Neurogenic Bladder

Counseling

Counsel regarding adequate fluid intake, regular voiding, seeking medical attention for symptoms of voiding dysfunction or urinary tract infection, and compliance with recommended bladder catheterization regimen.

Considerations for Further Testing and Intervention

Urologic consultation for patients with dysfunctional voiding or recurrent urinary tract infections.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

System = CNS
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
120

Neurosurgery - Spinal cord

Neurogenic bowel
Fecal incontinence

Host Factors

Tumor adjacent to or compressing spinal cord or cauda equina

Treatment Factors

Radiation dose ≥50 Gy to bladder, pelvis, or spine

Host Factors

Injury above the level of the sacrum

History

Chronic constipation
Fecal soiling

Yearly

Physical

Rectal exam

As clinically indicated

Counseling

Counsel regarding benefits of adherence to bowel regimen, including adequate hydration, fiber, laxatives/enemas as clinically indicated.

Considerations for Further Testing and Intervention

GI consultation to establish bowel regimen for patients with chronic impaction or fecal soiling.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

System = CNS
Score = 2A

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
121
Male

Neurosurgery - Spinal cord

Sexual dysfunction (Male)

Erectile dysfunction

Host Factors

Tumor adjacent to or compressing spinal cord or cauda equina

Treatment Factors

Radiation to bladder, pelvis, or spine

Medical Conditions

Hypogonadism

Host Factors

Injury above the level of the sacrum

Treatment Factors

Radiation dose ≥55 Gy to penile bulb in adult
Radiation dose ≥45 Gy in prepubertal child

History

Sexual function (erections, nocturnal emissions, libido)
Medication use impacting sexual function

Yearly

Health Links (see "Patient Resources" field)

Male Health Issues

Resources

www.urologychannel.com External Web Site Policy

Considerations for Further Testing and Intervention

Urologic consultation in patients with positive history.

121
Female

Neurosurgery - Spinal cord

Sexual dysfunction (Female)

Host Factors

Tumor adjacent to or compressing spinal cord or cauda equina

Treatment Factors

Radiation to bladder, pelvis, or spine

Medical Conditions

Hypogonadism
Vaginal fibrosis/stenosis
Chronic GVHD

Host Factors

Injury above the level of the sacrum

History

Dyspareunia
Altered or diminished sensation, loss of sensation
Medication use impacting sexual function

Yearly

 

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Oophoropexy

System = Reproductive (Female)
Score = 2A

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
122
Female

Oophoropexy

Info Link: If shielding from radiation was incomplete: See also Section 84 (ovarian dysfunction related to radiation).

Oophoropexy-related complications

Inability to conceive despite normal ovarian function
Dyspareunia
Symptomatic ovarian cysts
Bowel obstruction
Pelvic adhesions

Treatment Factors

Ovarian radiation
Tubo-ovarian dislocation, especially with lateral ovarian transposition

 

History

Abdominal pain
Pelvic pain
Dyspareunia
Inability to conceive despite normal ovarian function

Yearly

Considerations for Further Testing and Intervention

Gynecologic consultation for patients with positive history and/or physical findings.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Oophorectomy (Unilateral)

System = Reproductive (Female)
Score = 2A

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
123
Female

Oophorectomy (unilateral)

Premature menopause

Info Link: Evidence for premature menopause following unilateral oophorectomy is limited and has been extrapolated from the adult literature.

Health Behaviors

Smoking

Treatment Factors

Combined with:

  • Pelvic radiation
  • Alkylating agents
  • TBI

History

Pubertal (onset, tempo)
Menstrual/pregnancy history
Sexual function (vaginal dryness, libido)
Medication use impacting sexual function

Yearly

Physical

Tanner staging

Yearly until sexually mature

Screening

FSH
LH
Estradiol

Baseline at age 13 and as clinically indicated in patients with delayed puberty, irregular menses, primary or secondary amenorrhea, and/or clinical signs and symptoms of estrogen deficiency

Health Links (see "Patient Resources" field)

Female Health Issues

Resources

American Society for Reproductive Medicine (www.asrm.org External Web Site Policy)
Fertile Hope (www.fertilehope.org External Web Site Policy)

Counseling

Counsel currently menstruating women to be cautious about delaying childbearing. Counsel regarding need for contraception.

Considerations for Further Testing and Intervention

Refer to reproductive endocrinology for counseling regarding oocyte cryopreservation in patients wishing to preserve options for future fertility.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Oophorectomy (Bilateral)

System = Reproductive (Female)
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
124
Female

Oophorectomy (bilateral)

Hypogonadism
Infertility

   

Screening

Gynecologic or endocrinologic consultation for initiation of HRT

At age 11

Health Links (see "Patient Resources" field)

Female Health Issues

Resources

American Society for Reproductive Medicine (www.asrm.org External Web Site Policy)
Fertile Hope (www.fertilehope.org External Web Site Policy)

Counseling

Counsel regarding benefits of HRT in promoting pubertal progression, bone and cardiovascular health. Counsel women regarding pregnancy potential with donor eggs (if uterus is intact).

Considerations for Further Testing and Intervention

Bone density evaluation for osteopenia/osteoporosis in hypogonadal patients. Reproductive endocrinology referral regarding assisted reproductive technologies.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Orchiectomy

Reproductive (Male)

System = Male Reproductive
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
125
Male

Orchiectomy

Hypogonadism
Infertility

Treatment Factors

Unilateral orchiectomy combined with pelvic or testicular radiation and/or alkylating agents

Treatment Factors

Bilateral orchiectomy

History

Pubertal (onset, tempo)
Sexual function (erections, nocturnal emissions, libido)
Medication use impacting sexual function

Yearly

Physical

Tanner staging
Testicular volume by Prader orchidometry

Yearly until sexually mature

Screening

Semen analysis

As requested by patient for evaluation of infertility

Health Links (see "Patient Resources" field)

Male Health Issues

Counseling

For patients with single testis - counsel to wear athletic supporter with protective cup during athletic activities.

Considerations for Further Testing and Intervention

Consider surgical placement of testicular prosthesis. For patients with unilateral orchiectomy: Obtain FSH, LH and testosterone as clinically indicated for signs and symptoms of testosterone deficiency (e.g., those with delayed puberty, persistently abnormal hormone levels). For patients with bilateral orchiectomy: Refer boys with post-surgical hypogonadism after bilateral orchiectomy to endocrinology at age 11 for initiation of hormonal replacement therapy to initiate puberty.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Pelvic Surgery

System = Urinary
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
126

Pelvic surgery
Cystectomy

Info Link: For patients with cystectomy: See also Section 109, above

Urinary incontinence
Urinary tract obstruction

Info Link: Urinary tract obstruction related to retroperitoneal fibrosis

Host Factors

Tumor adjacent to or compressing spinal cord or cauda equina

Treatment Factors

Retroperitoneal node dissection
Extensive pelvic dissection (e.g., bilateral ureteral re-implantation, retroperitoneal tumor resection)
Radiation to the bladder, pelvis, and/or lumbar-sacral spine

 

History

Hematuria
Urinary urgency/frequency
Urinary incontinence/retention
Dysuria
Nocturia
Abnormal urinary stream

Yearly

Counseling

Counsel regarding adequate fluid intake, regular voiding, seeking medical attention for symptoms of voiding dysfunction or urinary tract infection, compliance with recommended bladder catheterization regimen.

Considerations for Further Testing and Intervention

Urologic consultation for patients with dysfunctional voiding or recurrent urinary tract infections.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

System = GI/Hepatic
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
127

Pelvic surgery
Cystectomy

Fecal incontinence

Host Factors

Tumor adjacent to or compressing spinal cord or cauda equina

Treatment Factors

Radiation to the bladder, pelvis, or spine

 

History

Chronic constipation, fecal soiling

Yearly

Physical

Rectal exam

As clinically indicated

Counseling

Counsel regarding benefits of adherence to bowel regimen, including adequate hydration, fiber, laxatives/enemas as clinically indicated.

Considerations for Further Testing and Intervention

GI consultation to establish bowel regimen for patients with chronic impaction or fecal soiling.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

System = Reproductive (Male/Female)
Score = 2A

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
128
Male

Pelvic surgery
Cystectomy

Sexual dysfunction (Male)

Retrograde ejaculation
Anejaculation
Erectile dysfunction

Treatment Factors

Retroperitoneal node dissection
Retroperitoneal tumor resection
Cystectomy
Radical prostatectomy
Tumor adjacent to spine
Radiation to bladder, pelvis, or spine

Medical Conditions

Hypogonadism

Host Factors

Extensive presacral tumor resection or dissection
Radiation dose ≥55 Gy to penile bulb in adult and ≥45 Gy in prepubertal child

History

Sexual function (erections, nocturnal emissions, libido)
Medication use impacting sexual function
Quality of ejaculate (frothy white urine with first void after intercourse suggests retrograde ejaculation)

Yearly

Health Links (see "Patient Resources" field)

Male Health Issues

Resources

www.urologychannel.com External Web Site Policy

Considerations for Further Testing and Intervention

Urologic consultation in patients with positive history and/or physical exam findings.

128
Female

Pelvic surgery
Cystectomy

Sexual dysfunction (Female)

Host Factors

Chronic GVHD
Hypogonadism
Tumor adjacent to spine

Medical Conditions

Radiation to bladder, pelvis, or spine

 

History

Dyspareunia
Altered or diminished sensation, loss of sensation
Medication use impacting sexual function

Yearly

 

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

System = Urinary
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
129
Male

Pelvic surgery
Cystectomy

Hydrocele

Treatment Factors

Retroperitoneal node dissection

 

Physical

Testicular exam to evaluate for hydrocele

Yearly

Considerations for Further Testing and Intervention

Urologic consultation for patients with hydrocele.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Pulmonary

System = Pulmonary
Score = 2A

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
130

Pulmonary lobectomy
Pulmonary metastasectomy
Pulmonary wedge resection

Pulmonary dysfunction

Treatment Factors

Combined with pulmonary toxic therapy

  • Bleomycin
  • Busulfan
  • Carmustine (BCNU)
  • Lomustine (CCNU)

Medical Conditions

Atopic history

Health Behaviors

Smoking

Treatment Factors

Combined with:

  • Chest radiation
  • TBI

History

Cough
SOB
DOE
Wheezing

Yearly

Physical

Pulmonary exam

Yearly

Screening

Chest x-ray
PFTs (including DLCO and spirometry)

Baseline at entry into long-term follow-up. Repeat as clinically indicated in patients with abnormal results or progressive pulmonary dysfunction.

Health Links (see "Patient Resources" field)

Pulmonary Health

Resources

Extensive information regarding smoking cessation is available for patients on the NCI's website: www.smokefree.gov External Web Site Policy

Counseling

Counsel regarding tobacco avoidance/smoking cessation. Patients who desire to SCUBA dive should be advised to obtain medical clearance from a pulmonologist.

Considerations for Further Testing and Intervention

In patients with abnormal PFTs and/or CXR, consider repeat evaluation prior to general anesthesia. Pulmonary consultation for patients with symptomatic pulmonary dysfunction; Influenza and pneumococcal vaccinations

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Splenectomy

System = Immune
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
131

Splenectomy

Asplenia

At risk for life-threatening infection with encapsulated organisms (e.g., Haemophilus influenzae, Streptococcus pneumoniae, Meningococcus)

   

Physical

Physical exam at time of febrile illness to evaluate degree of illness and potential source of infection

When febrile T ≥101 degrees F

Screening

Blood culture

When febrile T ≥101 degrees F

Health Links (see "Patient Resources" field)

Splenic Precautions

Counseling

Medical alert bracelet/card noting asplenia. Counsel to avoid malaria and tick bites if living in or visiting endemic areas

Considerations for Further Testing and Intervention

In patients with T ≥101 degrees F (38.3 degrees C) or other signs of serious illness, administer a long-acting, broad-spectrum parenteral antibiotic (e.g., ceftriaxone), and continue close medical monitoring while awaiting blood culture results. Hospitalization and broadening of antimicrobial coverage (e.g., addition of vancomycin) may be necessary under certain circumstances, such as the presence of marked leukocytosis, neutropenia, or significant change from baseline CBC; toxic clinical appearance; fever ≥104 degrees F; meningitis, pneumonia, or other serious focus of infection; signs of septic shock; or previous history of serious infection. Immunize with Pneumococcal, Meningococcal, and HIB vaccines. Pneumovax booster in patients ≥10 years old at ≥5 years after previous dose. Discuss with dental provider potential need for antibiotic prophylaxis based on planned procedure.

Info Link: Prophylactic antibiotic therapy may be indicated in a subset of patients. Consider prophylactic PCN for at least 2-3 years post-splenectomy and until at least 5 years of age for young children; some make a strong argument for 5 years postsplenectomy in adults and until age 18 in children. UK investigators recommend lifelong use. Monitor antibody titers to PPV23 annually for first 2-3 years after initial vaccine; re-immunize if sub-protective levels, as opposed to just one booster at 5 years. Check antibody titers to PPV23 after booster at least once at 5 year mark to verify protective titer.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Thyroidectomy

System = Endocrine/Metabolic
Score = 1

Sec # Therapeutic
Agent(s)
Potential Late Effects Risk Factors Highest Risk Factors Periodic Evaluation Health Counseling Further Considerations
132

Thyroidectomy

Info Link: Total thyroidectomy is uncommon, but if done is associated with the risk of hypoparathyroidism. This complication generally occurs in the early postoperative period and may persist. Patients with a history of total thyroidectomy should be monitored for signs and symptoms of hypoparathyroidism (e.g., paresthesias, muscle cramping, altered mental status, hyperreflexia, tetany, hypocalcemia, and hyperphosphatemia).

Hypothyroidism

   

History

Fatigue
Weight gain
Cold intolerance
Constipation
Dry skin
Brittle hair
Depressed mood

Yearly; Consider more frequent screening during periods of rapid growth

Physical

Height
Weight
Hair and skin
Thyroid exam

Yearly; Consider more frequent screening during periods of rapid growth

Screening

TSH
Free T4

Yearly; Consider more frequent screening during periods of rapid growth

Health Links (see "Patient Resources" field)

Thyroid Problems

Counseling

Counsel at-risk females of childbearing potential to have their thyroid levels checked prior to attempting pregnancy and periodically throughout pregnancy.

Considerations for Further Testing and Intervention

Endocrine consultation for medical management.

Note: See a list of Abbreviations at the end of the "Major Recommendations" field.

Abbreviations

  • BUN, blood urea nitrogen
  • Ca, calcium
  • CBC, complete blood count
  • Cl, chloride
  • CNS, central nervous system
  • CO2, carbon dioxide
  • CXR, chest x-ray
  • DLCO, diffusion capacity of carbon monoxide
  • DOE, dyspnea on exertion
  • FSH, follicle stimulating hormone
  • GI, gastrointestinal
  • GVHD, graft versus host disease
  • Gy, gray
  • HIB, Haemophilus influenza b vaccine
  • HRT, hormone replacement therapy
  • IO, intraosseous
  • IQ, intelligence quotient
  • IT, intrathecal
  • IV, intravenous
  • K, potassium
  • KUB, kidneys, ureter, bladder radiograph
  • LH, luteinizing hormone
  • Mg, magnesium
  • Na, sodium
  • NCI, National Cancer Institute
  • NSAIDs, non-steroidal anti-inflammatory drugs
  • PCN, penicillin
  • PFTs, pulmonary function tests
  • PO4, phosphate
  • PPV23, pneumococcal polysaccharides vaccine, 23-valent
  • SOB, shortness of breath
  • T, temperature
  • T4, thyroxine
  • TBI, total body irradiation
  • TSH, thyroid stimulating hormone
  • UK, United Kingdom
  • V-A, ventriculoatrial
  • V-P, ventriculoperitoneal
  • V-V, ventriculovenous

Definitions:

Explanation of Scoring for the Long-Term Follow-Up Guidelines

Each item was scored based on the level of evidence currently available to support it. Scores were assigned according to a modified version of the National Comprehensive Cancer Network "Categories of Consensus," as follows:

Category Statement of Consensus
1 There is uniform consensus of the panel that (1) there is high-level evidence linking the late effect with the therapeutic exposure, and (2) the screening recommendation is appropriate based on the collective clinical experience of panel members.
2A There is uniform consensus of the panel that (1) there is lower-level evidence linking the late effect with the therapeutic exposure, and (2) the screening recommendation is appropriate based on the collective clinical experience of panel members.
2B There is non-uniform consensus of the panel that (1) there is lower-level evidence linking the late effect with the therapeutic exposure, and (2) the screening recommendation is appropriate based on the collective clinical experience of panel members.
3 There is major disagreement that the recommendation is appropriate.

Uniform consensus: Near-unanimous agreement of the panel with some possible neutral positions.
Non-uniform consensus: The majority of panel members agree with the recommendation; however, there is recognition among panel members that, given the quality of evidence, clinicians may choose to adopt different approaches.
High-level evidence: Evidence derived from high quality case control or cohort studies.
Lower-level evidence: Evidence derived from non-analytic studies, case reports, case series, and clinical experience.

Clinical Algorithm(s)

None provided

Evidence Supporting the Recommendations

Type of Evidence Supporting the Recommendations

The type of supporting evidence is identified and graded for each recommendation (see "Major Recommendations").

Although several well-conducted studies on large populations of childhood cancer survivors have demonstrated associations between specific exposures and late effects, the size of the survivor population and the rate of occurrence of late effects does not allow for clinical studies that would assess the impact of screening recommendations on the morbidity and mortality associated with the late effect. Therefore, scoring of each exposure reflects the expert panel's assessment of the level of literature support linking the therapeutic exposure with the late effect coupled with an assessment of the appropriateness of the recommended screening modality in identifying the potential late effect based on the panel's collective clinical experience.

Benefits/Harms of Implementing the Guideline Recommendations

Potential Benefits

Potential benefits of implementing these guidelines into clinical practice include earlier identification of and intervention for late onset therapy-related complications in this at-risk population, potentially reducing or ameliorating the impact of late complications on the health status of survivors. In addition, ongoing healthcare that promotes healthy lifestyle choices and provides ongoing monitoring of health status is important for all cancer survivors.

Potential Harms

Potential harms of guideline implementation include increased patient anxiety related to enhanced awareness of possible complications, as well as the potential for false-positive screening evaluations, leading to unnecessary further workup. In addition, costs of long-term follow-up care may be prohibitive for some patients, particularly those lacking health insurance, or those with insurance that does not cover the recommended screening evaluations.

Qualifying Statements

Qualifying Statements
  • The information and contents of each document or series of documents made available by the Children's Oncology Group relating to late effects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "Health Link," whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational Content." All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis, or treatment obtained from a physician or healthcare provider.
  • To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified healthcare provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children's Oncology Group is a research organization and does not provide individualized medical care or treatment.
  • To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children's Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider.
  • While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
  • No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children's Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
  • Ultimately, as with all clinical guidelines, decisions regarding screening and clinical management for any specific patient should be individually tailored, taking into consideration the patient's treatment history, risk factors, co-morbidities, and lifestyle. These guidelines are therefore not intended to replace clinical judgment or to exclude other reasonable alternative follow-up procedures. The Children's Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider.

Implementation of the Guideline

Description of Implementation Strategy

Implementation of these guidelines is intended to standardize and enhance follow-up care provided to survivors of pediatric malignancies throughout the lifespan. Considerations in this regard include the practicality and efficiency of applying these broad guidelines in individual clinical situations. Studies to address guideline implementation and refinement are a top priority of the Children's Oncology Group (COG) Long-Term Follow-Up Guideline Core Committee, and proposals to study feasibility of guideline use in limited institutions are currently underway. Issues to be addressed include description of anticipated barriers to application of the recommendations in the guidelines and development of review criteria for measuring changes in care when the guidelines are implemented. Additional concerns surround the lack of current evidence establishing the efficacy of screening for late complications in pediatric cancer survivors. While most clinicians believe that ongoing surveillance for these late complications is important in order to allow for early detection and intervention for complications that may arise, development of studies addressing the efficacy of this approach is imperative in order to determine which screening modalities are optimal for asymptomatic survivors.

In addition, the clinical utility of this lengthy document has also been a top concern of the COG Long-Term Follow-Up Guideline Core Committee. While recognizing that the length and depth of these guidelines is important in order to provide clinically-relevant, evidence-based recommendations and supporting health education materials, clinician time limitations and the effort required to identify the specific recommendations relevant to individual patients have been identified as barriers to their clinical application. Therefore, the COG Long-Term Follow-Up Guideline Core Committee is currently partnering with the Baylor School of Medicine in order to develop a web-based interface, known as "Passport for Care," that will generate individualized exposure-based recommendations from these guidelines in a clinician-focused format for ease of patient-specific application of the guidelines in the clinical setting. As additional information regarding implementation of the Passport for Care web-based interface becomes available, updates will be posted at www.survivorshipguidelines.org External Web Site Policy.

Implementation Tools
Chart Documentation/Checklists/Forms
Patient Resources
Resources
For information about availability, see the Availability of Companion Documents and Patient Resources fields below.

Institute of Medicine (IOM) National Healthcare Quality Report Categories

IOM Care Need
Getting Better
Living with Illness
Staying Healthy
IOM Domain
Effectiveness
Patient-centeredness

Identifying Information and Availability

Bibliographic Source(s)
Children's Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Sections 107-132: surgery. Bethesda (MD): Children's Oncology Group; 2008 Oct. 28 p. [134 references]
Adaptation

Not applicable: The guideline was not adapted from another source.

Date Released
2003 Sep (revised 2008 Oct)
Guideline Developer(s)
Children's Oncology Group - Medical Specialty Society
Source(s) of Funding

This work was supported by the Children's Oncology Group grant U10 CA098543 from the National Cancer Institute.

Guideline Committee

Children's Oncology Group's Long-Term Follow-Up Guidelines Core Committee

Composition of Group That Authored the Guideline

Committee Members: Melissa M. Hudson, MD, Co-Chair – COG LTFU Guidelines Core Committee, Member, Department of Hematology-Oncology Director, Cancer Survivorship Division, Co-Leader, Cancer Prevention & Control Program, St. Jude Children's Research Hospital, Memphis, TN; Wendy Landier, RN, MSN, CPNP, CPON®; Co-Chair – COG LTFU Guidelines Core Committee, Clinical Director, Center for Cancer Survivorship City of Hope National Medical Center, Duarte, CA; Louis S. Constine, MD, F.A.S.T.R.O., Co-Chair – COG LTFU Guidelines Core Committee, Professor of Radiation Oncology and Pediatrics, Vice Chair, Department of Radiation Oncology, James P. Wilmot Cancer Center, University of Rochester Medical Center, Rochester, NY; Smita Bhatia, MD, MPH, Co-Chair – COG LTFU Guidelines Core Committee, Professor and Chair, Department of Population Sciences, City of Hope National Medical Center, Associate Director, Population Research, City of Hope Comprehensive Cancer Center, Duarte, CA; F. Daniel Armstrong, PhD, Professor and Associate Chair, Department of Pediatrics Director, Mailman Center for Child Development, University of Miami School of Medicine, Miami, FL; Joan Darling, PhD, COG Patient Advocacy Committee Representative, Lincoln, NE; Paul Graham Fisher, MD, MHS, Associate Professor, Neurology and Pediatrics, The Beirne Family Director of Neuro-Oncology at Packard Hospital, Stanford University Medical Center, Stanford, CA; Debra L. Friedman MD, MS, Associate Professor of Pediatrics, Ingram Distinguished Chair in Pediatric Oncology, Leader, Cancer Control and Prevention Program, Vanderbilt Ingram Cancer Center Nashville, TN, Daniel M. Green, MD, Member, Departments of Hematology-Oncology and Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, TN; Nina Kadan-Lottick, MD, MSPH Associate Research Scientist, Department of Pediatrics, Yale University School of Medicine, New Haven, CT; Lillian Meacham, MD, Medical Director, Cancer Survivor Program, Division of Pediatric Endocrinology, Children's Healthcare of Atlanta, Atlanta, GA; Anna T. Meadows, MD, Professor of Pediatrics, University of Pennsylvania School of Medicine, Director, Follow-Up Program, The Children's Hospital of Philadelphia, Philadelphia, PA, Joseph P. Neglia, MD, MPH, Professor of Pediatrics, Division of Hematology, Oncology, Blood and Marrow Transplantation, University of Minnesota School of Medicine, Minneapolis, MN; Kevin C. Oeffinger, MD, Director, Living Beyond Cancer Program, Memorial Sloan-Kettering Cancer Center, New York, NY; Leslie L. Robison, PhD, Chair, Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, TN; Charles A. Sklar, MD, Director, Long-Term Follow-Up Program, Memorial Sloan Kettering Cancer Center; New York, NY, Julia Steinberger, MD, MS, Associate Professor, Division of Cardiology, Department of Pediatrics, University of Minnesota School of Medicine, Minneapolis, MN

Financial Disclosures/Conflicts of Interest

All Children's Oncology Group (COG) members have complied with the COG conflict of interest policy, which requires disclosure of any potential financial or other conflicting interests.

Guideline Status

This is the current release of the guideline.

This guideline updates a previous version: Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Sections 107-132: surgery. In: Children's Oncology Group. Bethesda (MD): Children's Oncology Group; 2006 Mar. p. 26. [110 references]

Guideline Availability

Electronic copies: Available in Portable Document Format (PDF) from the Children's Oncology Group Web site External Web Site Policy.

Availability of Companion Documents

The following are available:

  • Instructions for use. Long-term follow-up guidelines. Version 3.0. Children's Oncology Group. 2008 Oct. 6 p.
  • Introduction and explanation of scoring. Long-term follow-up guidelines. Version 3.0. Children's Oncology Group. 2008 Oct. 9 p.
  • Summary of cancer treatment. Appendix I: Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Version 3.0. Children's Oncology Group. 2008 Oct.
  • Patient-specific guideline identification tool. Appendix I: Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Version 3.0. Children's Oncology Group. 2008 Oct.
  • Radiation reference guide. Appendix I: Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Version 3.0. Children's Oncology Group. 2008 Oct.

Electronic copies: Available in Portable Document Format (PDF) from the Children's Oncology Group Web site External Web Site Policy.

Patient Resources

In an effort led by the Nursing Clinical Practice Subcommittee, complementary patient education materials (Health Links) were developed and are available in Appendix II of the original guideline document. The following Health Links are relevant to this summary:

Section 107

Section 109

Sections 109, 114

Section 110

Sections 111, 123, 124

Section 112

Section 113

Section 114

Section 115

Section 119

Section 121, 125, 128

Section 130

Section 131

Section 132

Please note: This patient information is intended to provide health professionals with information to share with their patients to help them better understand their health and their diagnosed disorders. By providing access to this patient information, it is not the intention of NGC to provide specific medical advice for particular patients. Rather we urge patients and their representatives to review this material and then to consult with a licensed health professional for evaluation of treatment options suitable for them as well as for diagnosis and answers to their personal medical questions. This patient information has been derived and prepared from a guideline for health care professionals included on NGC by the authors or publishers of that original guideline. The patient information is not reviewed by NGC to establish whether or not it accurately reflects the original guideline's content.

NGC Status

This NGC summary was completed by ECRI Institute on May 11, 2007. The information was verified by the guideline developer on June 11, 2007. This summary was updated by ECRI Institute on October 3, 2007 following the U.S. Food and Drug Administration (FDA) advisory on Rocephin (ceftriaxone sodium). This summary was updated by ECRI Institute on May 5, 2009, following the U.S. Food and Drug Administration (FDA) advisory on Rocephin (ceftriaxone sodium). This NGC summary was updated by ECRI Institute on May 3, 2010. The updated information was verified by the guideline developer on July 13, 2010. This summary was updated by ECRI Institute on November 12, 2010 following the U.S. Food and Drug Administration (FDA) advisory on Afluria (influenza virus vaccine).

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This NGC summary is based on the original guideline, which is subject to the guideline developer's copyright restrictions.

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