2.1 Transition of Care: Primary Care and Levels of Care
Key Takeaways
- Safe discharge from a tertiary pediatric hematology/oncology center requires medication reconciliation, return demonstration of fever response and central-line care, a booked follow-up, and a named communication path to both the oncology team and the primary care provider (PCP).
- Shared-care after therapy keeps cancer-related surveillance with the pediatric hematology/oncology team while the PCP resumes well-child care, growth tracking, and immunization coordination; it is not a complete handoff that drops oncology.
- Live-virus vaccines are generally deferred while a child is immunosuppressed; inactivated vaccines may be considered, but catch-up timing is coordinated with the oncology team rather than restarted from a school or birthday calendar.
- School-based care is a true level of care: the school nurse needs a fever plan, device precautions, and activity limits, usually supported by a 504 plan or individualized education program (IEP).
- Late-effects clinic referral is triggered by completion of therapy and by exposures such as anthracyclines, cisplatin, radiation fields, and central-nervous-system (CNS) treatment, with a complete treatment record transferred to every receiving site.
Why transitions fail—and what the CPHON nurse owns
A 6-year-old completing delayed intensification for high-risk B-cell acute lymphoblastic leukemia (ALL) is medically ready to leave the children's hospital, but the family lives 90 minutes away, the tunneled central line is still in place, and oral mercaptopurine plus methotrexate will start this week. The CPHON exam treats this moment as transition of care, not as a discharge checklist. Domain I.A.1–2 tests whether you can move a child among pediatric hematology/oncology specialty care, primary care, rehabilitation, home care, outpatient infusion, and school-based care without dropping a medication, a fever plan, or a record.
The tertiary center is the hub during intensive therapy. It is not meant to remain the only source of well-child care, immunizations, school forms, or ear infections once the child is stable. The trap is either sending the family home with no PCP relationship, or telling the PCP "we have this now" and never sending a roadmap, cumulative doses, or line type.
Levels of care the exam actually names
| Level | Typical pediatric hem/onc use | Nursing transition focus |
|---|---|---|
| Tertiary specialty (inpatient/clinic) | Induction, high-intensity cycles, new fever workup, protocol decisions | Who owns the protocol, after-hours number, when to return |
| Outpatient infusion | Same-day chemo, blood products, short IV antibiotics | Line access, hypersensitivity watch, same-day discharge criteria |
| Home care | Line care, home antibiotics, parenteral nutrition, palliative support | Competency, supplies, who to call at 02:00 |
| Rehabilitation | After amputation, vincristine neuropathy, prolonged ICU or bed rest | Therapy goals, skin/line protection, return-to-school plan |
| Primary care | Well-child visits, growth, developmental screening, most vaccines | Shared-care letter, immunization rules, copy of the treatment summary |
| School-based care | Daily observation, medication, PE, 504/IEP | Fever, crowds, central-line precautions, no live-vaccine clinic without oncology clearance |
A 14-year-old with osteosarcoma who had distal femoral resection may leave the sarcoma center for inpatient rehabilitation, then home physical therapy, then school with PE modifications—while still traveling to outpatient methotrexate. Each hop needs a medication list, a device plan, and a named receiving clinician.
When a child can leave the tertiary center
Readiness is clinical and social. Typical gates:
- Hemodynamic stability, controlled pain, and counts that the outpatient or home plan can support.
- No new undiagnosed fever; if neutropenia is still present, the family must be able to reach the designated clinic or emergency department quickly.
- Caregivers have return-demonstrated oral chemotherapy timing, prophylactic sulfamethoxazole-trimethoprim, antiemetics, and the written fever number (commonly 38.0°C / 100.4°F, or the protocol-specific number on the family's sheet).
- Central-line teaching is complete: dressing, flush, clamp, never force a flush, what a break in the line looks like, no swimming until the team clears it, and signs of exit-site infection.
- Home nursing, infusion pharmacy, and durable equipment are actually scheduled—not "we will call Monday."
- Follow-up is booked, and the family can describe who to call after hours.
Do not send a toddler home solely because the bed is needed if the only caregiver cannot flush the port, has no reliable phone, or cannot reach emergency care. That child still belongs in a monitored setting or a closer partner hospital with a warm handoff.
Medication reconciliation is a safety intervention
Reconciliation is more than printing the inpatient list. At every handoff—PICU to oncology floor, floor to outpatient, tertiary center to a community hospital, clinic to home—the nurse compares what the child should be taking with what the family will actually administer:
- Protocol oral agents (mercaptopurine, methotrexate, corticosteroids) with food/timing rules.
- Infection prophylaxis and any antifungals or antivirals still indicated.
- Pain, bowel, and antiemetic plans; stop duplicate acetaminophen products.
- Home supplies for the line: heparin or saline flush per institutional protocol, dressing kit, emergency clamp.
- Allergies, irradiated/CMV-safe blood needs, and "do not give live vaccines" status.
A 4-year-old with high-risk neuroblastoma going home with a central line and cyclic topotecan/cyclophosphamide is a classic miss if the local emergency department never receives the fever algorithm or the line type.
Shared-care with primary care
After intensive therapy, many programs use a shared-care model: the pediatric hematology/oncology team remains responsible for cancer surveillance, late-effect risk, and protocol questions; the PCP resumes immunizations (with oncology input), growth, development, mental health screening, and ordinary acute illness. Rural families especially need this split so a fever at 22:00 does not always mean a three-hour drive if the local plan is pre-arranged.
Teach the PCP, in writing:
- Diagnosis, date, protocol name, and whether therapy is ongoing or complete.
- Central-line or port details and who repairs a break.
- Fever-and-neutropenia rule: this is an emergency until counts recover and the team says otherwise.
- Live versus inactivated vaccine principles (see below)—do not hand the PCP a made-up catch-up calendar.
- When to call oncology before giving intramuscular injections, live vaccines, or dental surgery.
Keep the PCP in the loop during therapy rather than "reactivating" them years later with no records.
Vaccination catch-up: principles, not a schedule
Do not memorize or invent month-by-month catch-up dates for the exam. Teach coordination:
- Live-virus vaccines (measles-mumps-rubella, varicella, live attenuated influenza, rotavirus, oral typhoid, yellow fever) are generally deferred while the child is significantly immunosuppressed, including intensive chemotherapy and early post–hematopoietic stem cell transplant (HSCT) periods.
- Inactivated vaccines may be given in selected windows, but antibody response can be blunted; timing belongs to the oncology team, often in concert with the PCP.
- After immune recovery, catch-up is planned with the PCP and oncology, using current public-health schedules and titers when the team orders them—not a school nurse's birthday rule.
- Household contacts should stay up to date so they do not bring wild-type disease home. Inactivated vaccines for contacts are encouraged. Live vaccines for healthy household members are usually appropriate, with team-specific caveats (for example, careful handling of rotavirus-vaccine diapers).
- School immunization clinics do not vaccinate the oncology patient without oncology clearance.
A 5-year-old finishing ALL maintenance does not get measles-mumps-rubella at the school fair because kindergarten paperwork is due. The PCP and oncology team decide together.
School as a care setting
School-based care is where most life happens. Before return:
- Written fever, vomiting, and varicella-exposure instructions for the school nurse.
- Line/port protection, no contact sports until cleared, and crowd precautions during neutropenia.
- A 504 plan or IEP for absences, reduced stamina, hearing or cognitive changes, and testing accommodations.
- Peer-disclosure plan chosen by the child and family—not a hallway announcement.
Transfer of records and late-effects referral
Every receiving site needs more than a discharge summary. Send diagnosis and staging, protocol roadmap, cumulative anthracycline dose, radiation fields and doses, surgeries, major complications, line history, blood-product special needs, and the current medication list. Late-effects clinic referral is indicated when therapy is complete or when exposures predict organ risk (anthracyclines, cisplatin or carboplatin, radiation, CNS-directed therapy, HSCT). Do not wait for a symptom to appear before naming the clinic and transferring the file.
The CPHON nurse's product at the door is a family that can state the fever rule, a PCP who has the record, a school nurse who knows the line, and a scheduled path back to specialty and late-effects care.
A 6-year-old with high-risk ALL is discharging from the tertiary center to a home 90 minutes away with a tunneled central line and oral maintenance chemotherapy. What is the CPHON nurse's priority for a safe transition?
A 4-year-old with high-risk neuroblastoma is ready for home care with a central line. Which immunization principle should the nurse teach the family and coordinate with the PCP and oncology team?
A 10-year-old completing therapy for Wilms tumor lives 3 hours from the children's hospital. How is the shared-care model after therapy best described?