🏅Your Path to Certification
Earn your way up three evidence-based tiers. Each builds on the last. Finish all three and receive your Certified Prepared Patient · Brain Tumor badge and printable certificate, recognized across the FFH Network.
Aware · Identity: Self-Advocate
You know your body and your disease. Layer 1 — Condition Literacy.
- Complete Modules 1–4 (Condition Literacy)
- Pass the "What a Brain Tumor Is" quiz (≥80%)
- Identify your tumor type, WHO grade, key molecular markers, and current KPS
- Build your seizure log + treatment-day diary + symptom tracker with the FFH "Notice and Name" framework
Active · Identity: Care Team Member
You partner with your team and navigate the system. Layer 2 — Care & System Literacy.
- Complete Modules 5–7 (Make Every Visit Count · When to Call vs ED · Comorbidity Awareness)
- Demonstrate teach-back on your treatment plan, seizure-safety rules, and your "when to call vs 911" decision rule
- Complete one "great visit" prep + debrief
- Build your When-to-Call plan + Care Team card
- Successfully resolve one treatment prior auth, copay-help application, or oncology care-navigator engagement
Certified Prepared Patient · Identity: Ambassador
You teach, mentor, fight stigma, and shape research & policy. Layer 3 — Advocacy & Ambassadorship.
- Complete Modules 8–10 (Family & Care Team · Talk to Kids/Partner/Employer + Mentor · Survivorship & Mastery)
- Mentor 1 newly-diagnosed person or family OR present at a support group / school / faith community
- Sign the Prepared Patient Pledge
- Complete advance care planning (POA, proxy, advance directive, POLST/MOLST, will)
- Submit one advocacy action (story, feedback letter, trial review, policy comment)
📋Master Pre / Post Assessment
Where You Stand — Confidence Before & After
Seven dimensions of being a Prepared Patient. Answer once at the start of your journey and again at the end. Your goal is to see real growth across understanding, self-management, communication, and optimal utilization — knowing when to call your team, when to use Day Hospital, and when to go to the ER. Your answers stay on this device unless you choose to share with your clinician.
📈 Your Pre→Post Growth
📞Know Who to Call — Before the ER
Brain tumor care runs across surgery, treatment, recovery, surveillance, and (sometimes) recurrence. Most days are routine, some days bring side-effect calls, and rare moments are true emergencies. Knowing the right number to call — your oncology team, the ABTA helpline, or 911 — saves time, dignity, and unnecessary ED visits. Save these numbers in your phone today. The numbers below are placeholders — your institution will fill in the right ones for you.
🚨 New seizure, status epilepticus, or sudden focal change — 911
Status epilepticus (a seizure lasting >5 minutes, or back-to-back seizures without recovery) = 911. New focal weakness, sudden severe headache, sudden vision change, or new face droop in someone with a known brain tumor could be stroke, hemorrhage into the tumor, or seizure — 911. Herniation symptoms (severe headache + vomiting + drowsiness + unequal pupils) = 911 immediately. Time the seizure if you can.
🧭 New headache pattern, cognitive change, or worsening side effects — call before the ED
For a new or progressive headache pattern (especially morning, with vomiting), cognitive or personality change over weeks, or worsening side effects from chemo, radiation, or steroids, call your [Oncology Triage Line: (555) 123-4567]. Fever during chemo may need same-day evaluation depending on counts and regimen — call immediately. Most issues are addressable in clinic; the ED is reserved for the acute list above.
💬 Routine questions, refills, scheduling, caregiver support
Use [MyChart portal] first — most messages answered within 1 business day. For chemo / steroid refills or copay help, call [Oncology Specialty Pharmacy: (555) 222-9050]. For caregiver support, peer mentor matching, and local resources, call the American Brain Tumor Association helpline 1-800-886-2282 — free, real humans, weekdays.
🚑 Call 911 right away for any of these
Sudden one-sided weakness · face droop · slurred speech · sudden severe headache · sudden vision change · sudden balance loss · trouble understanding speech (BE-FAST positive — could be stroke, hemorrhage, or seizure). Status epilepticus (seizure >5 min or back-to-back), herniation symptoms (severe headache + vomiting + drowsiness + pupil change + posturing), severe injury, suspected aspiration, or breathing trouble — 911. Time the seizure. Note the last known well or last seen time.
📚Condition Literacy & the 10 Prepared Patient Competencies
A Prepared Patient builds three kinds of health literacy — and grows into three identities. Each competency works through the FFH three pillars: Learn It · Live It · Share It.
Advocate for Self
You speak up for your own care, plan, pain, and goals.
Care Team Member
You partner with your team — not above, not below.
Ambassador
You teach, mentor, and shape research, policy & access.
🧬 Condition Literacy Learn It · Tier 1 Aware
"I know my body and my disease." The foundation. Without this, nothing else holds.
What a Brain Tumor Is
A spectrum from benign meningioma to high-grade glioma to metastatic disease. Primary vs. metastatic. WHO grade I–IV. Modern molecular markers (IDH, MGMT, 1p/19q) drive treatment more than location alone.
Know My Numbers & Markers
Tumor type, WHO grade, molecular markers (IDH, MGMT, 1p/19q, ATRX, TERT, BRAF, NF1). KPS in plain language. Tumor measurements over time + RANO response. Most primary brain tumor causes are unknown.
Lifestyle Force Field — Recovery, Rehab, Sleep, Mood, Nutrition, Seizure Safety
Rehabilitation (PT, OT, SLP) starts early — real medicine. Sleep, mood, nutrition through treatment. Seizure precautions until cleared. Steroid management. Fatigue pacing. Social connection. Stack 3–4 and recovery measurably improves.
Treatment Landscape — Surgery, Radiation, Chemo, Targeted, Trials, Palliative Care
Surgery (GTR > STR > biopsy). Radiation (IMRT, proton, SRS). Chemo (temozolomide for glioma, others by type). Targeted therapy (BRAF, NTRK). TTFields for selected glioblastoma. Clinical trials at every decision. Early palliative care alongside disease-directed treatment improves outcomes — including survival.
🤝 Care & System Literacy Live It · Tier 2 Active
"I'm part of the team. I navigate the system." Where most preventable ER visits, readmissions, and frustration happen — and where this course pays off the most. Optimal utilization lives here.
Make Every Visit Count — SHARE Approach + Teach-Back
AHRQ SHARE Approach (Seek, Help, Assess, Reach, Evaluate). Teach-back at every visit. 3-question max written priority list. Numbers card + med list + second pair of ears. Oncology visits are complex; preparation multiplies value.
When to Call vs Go to ED — Seizure, Headache Pattern Change, Focal Deficit
Status epilepticus → 911. Sudden focal deficit → 911 (could be stroke, hemorrhage, or seizure). Herniation symptoms → 911. New headache pattern + vomiting → call same day. Fever during chemo → call same day. People with brain tumors can also have strokes.
Comorbidity Awareness — Cognitive, Mood, Vascular, Endocrine, VTE, Second Malignancy
BT-specific Module 7. Post-treatment cognitive effects ("chemo brain," radiation effects). Mood >50% lifetime. Cranial radiation → vascular risk (cross-references the upstream vascular cluster module). Endocrine sequelae if pituitary-region radiation. VTE elevated. Bone health on long-term steroids.
📣 Advocacy & Ambassadorship Share It · Tier 3 Certified
"I speak up. I lift others. I shape the future." This is what turns a Prepared Patient into a force multiplier for the whole community.
Family, Caregiver, and the Care Team
The family caregiver is the central team member — managing calendars, attending visits, often noticing cognitive or personality change first. Multi-specialty team: neuro-oncology + neurosurgery + radiation oncology + medical oncology + palliative care (early!) + neuropsychology + social work + ABTA peer support. Caregiver wellness plan is real medicine.
Sharing — Talk to Kids, Partner, Employer; Mentor
Kids: plain language + age-appropriate honesty (CaringBridge models help). Partners: long-arc planning. Employers: ADA accommodations (flex hours, treatment-day leave, cognitive support). FMLA / SSDI Compassionate Allowance for high-grade glioma. Peer mentor — change a newly-diagnosed person's orientation. FFH "Notice and Name" framework — observation, never diagnosis.
Mastery & Graduation — Survivorship, Recurrence Monitoring, ACP, Peer Mentor
Survivorship across the spectrum (cure-likely meningioma → long-arc high-grade glioma). Recurrence monitoring on team's schedule. Advance care planning while capacity is clear. Caregiver wellness plan. Peer mentoring active. Story contributed. Earn Certified Prepared Patient · Brain Tumor.
👥My Care Team
Your team is bigger than just the doctor — and the care partner is part of it. Click any card to edit, or click the + tile to add a new team member. Saved on this device. The Force Field Emergency Card below auto-syncs from this list. Starter roster pre-populated for Brain Tumor — your institution can edit any row. The Force Field Emergency Card auto-syncs from this list.
📖Glossary — words you'll hear
Plain-English definitions for terms doctors and labs use. Tap to expand.
Brain tumor (spectrum)
Glioma
Glioblastoma (GBM)
Meningioma
IDH mutation
MGMT methylation
1p/19q codeletion
WHO grade I–IV
KPS (Karnofsky Performance Status)
Gross total resection (GTR)
Temozolomide
Tumor-treating fields (TTFields, Optune)
RANO criteria
Early palliative care
🧪Lab Test Tutor — what your numbers mean
Lab Test Tutor — what your numbers mean
Don't just see a number — know what it means and what to ask. Your "normal" may be different from a friend's. Ask your team to write your personal baseline in the column on the right.
| Test | What it measures | Typical adult range | What to ask if it's off | My baseline |
|---|---|---|---|---|
| Brain MRI (with/without gadolinium) | The brain tumor imaging workhorse. Tracks tumor size, contrast enhancement, edema, and treatment response (RANO criteria). | Read in context · RANO complete/partial/stable/progression | Are the measurements stable? Any new enhancement? | [fill in] |
| Pathology + molecular markers (IDH, MGMT, 1p/19q, ATRX, TERT, BRAF, NF1) | The molecular fingerprint of your tumor. Drives treatment selection more than location alone. | Marker-specific (mutation, methylation, codeletion) | Do I have my molecular panel? Is it complete? | [fill in] |
| KPS (Karnofsky Performance Status) | Plain-language 0–100 function score. Anchors treatment decisions and trial eligibility. | 100 normal · 80 work with effort · 70 self-care · 60 occasional help · 50 considerable help · <50 substantial care | What is my current KPS? Any change? | [fill in] |
| CBC + CMP + LFTs (chemo monitoring) | Track bone marrow suppression, kidney and liver function on temozolomide and other chemotherapy regimens. Schedule depends on agent. | Drug-specific thresholds for dose adjustment / hold | Are my counts holding? Any value that should pause treatment? | [fill in] |
| Anti-seizure med (AED) level — if applicable | Some AEDs need level monitoring (e.g., phenytoin); levetiracetam usually does not. Confirm therapeutic range and adherence. | Drug-specific therapeutic range | Is my AED at therapeutic level? Any breakthrough seizures? | [fill in] |
| Endocrine panel (TSH, cortisol AM, IGF-1, sex hormones, prolactin) | If you've had pituitary-region radiation or have a sellar/parasellar tumor. Radiation-induced endocrinopathies appear over months-to-years. | Lab-specific normals; below-normal triggers replacement | Should I have an endocrine baseline? Annual follow-up? | [fill in] |
| PHQ-9 / GAD-7 (mood screens) | Depression, anxiety, and PTSD are common after brain tumor diagnosis — treatable and worth screening at least annually. | PHQ-9 ≥10 = moderate · GAD-7 ≥10 = moderate | Should I be screened? If positive, what is the plan? | [fill in] |
| D-dimer / leg US (if VTE concern) | Brain tumor patients carry elevated DVT/PE risk. Unilateral leg swelling, calf pain, or unexplained shortness of breath warrants urgent evaluation. | D-dimer often elevated post-op; leg US for confirmation | Any leg swelling, calf pain, or shortness of breath I should report? | [fill in] |
| BP / A1c / lipids | Long-term cranial radiation increases stroke and vascular risk. Same vascular numbers as the upstream cluster, especially after radiation. | BP <130/80 · A1c <7% (if T2D) · LDL to ASCVD goal | Am I at goal on the vascular numbers? What surveillance after radiation? | [fill in] |
| DXA bone-density scan | Long-term corticosteroids (e.g., dexamethasone) raise osteoporosis risk in brain tumor patients. | T-score ≤ −2.5 = osteoporosis; −1 to −2.5 = osteopenia | Should I have a baseline DXA? Vitamin D + calcium adequate? | [fill in] |
➕Add-On Modules & Earnable Badges
Stackable modules that match your situation. Complete one to earn an extra badge on your certificate. Your institution can add their own.
📓 Seizure Log + Driving-Rule Literacy
Track every event (date, duration, triggers, post-ictal). Know your state's seizure-free interval before driving (often 6 months). Family seizure first aid.
💊 Steroid Taper Schedule
Dexamethasone management: side-effect tracking (sleep, mood, blood sugar, GI, infection, bone health), pacing the taper, what to call about, what merits 911.
🩺 Infusion-Day Routine (Chemo)
Pre-medication, hydration, what to bring, side-effect watch list (febrile neutropenia, nausea, fatigue), recovery day, when to call.
☢️ Radiation Daily-Trip Routine
Mask fitting, daily commute logistics, skin care, fatigue pacing, late-effect awareness (cognitive, vascular, endocrine), survivorship hand-off after the course.
⚡ TTFields (Optune) Onboarding
For selected glioblastoma. Scalp prep, transducer-array routine, daily wear-time targets, troubleshooting, what to expect at re-imaging.
🏃 Home PT/OT/SLP Program
Post-op recovery and ongoing function. Walking, balance, fine motor, ADLs, speech, swallow, cognitive rehab — adapted to your KPS and tumor location.
📋 MRI Surveillance Routine
Surveillance MRI checklist: gadolinium consent, kidney-function check, claustrophobia plan, RANO interpretation, results-conversation script.
🌿 Palliative-Care Visit Prep
What palliative care actually is (NOT hospice). Symptom-control goals, advance planning topics, family-meeting agenda, integrating with disease-directed treatment.
🧪 In a Clinical Trial?
Protocol literacy, side-effect tracking, when to call the study coordinator vs your usual team. ABTA TrialConnect / ClinicalTrials.gov match by tumor type and molecular profile.
📋 Advance Care Planning Workshop
POA, healthcare proxy, advance directive, POLST/MOLST, will, financial plan — done while capacity is clear (matters especially with high-grade glioma).
👨👩👧 Caregiver Wellness
Caregiver PCP, mental-health, peer support, scheduled respite, back-up plan if the caregiver becomes unable to care. CaringBridge for centralizing family updates.
+ Add Your Institution's Module
Drop in your own — local cancer-center onboarding, infusion-suite intro, peer-mentor program, anything.
🛡️Force Field Emergency Card
🛡️ Force Field Emergency Card FRIDGE · WALLET · EMT-READY
A one-page emergency record for any EMT, ER, new doctor, or transition visit. Print one for the fridge, one for your wallet. Updates anytime. This is the document you hand to a stranger when you can't speak for yourself.
🤝 My Care Team — call list for any clinician picking up my care
📘My Health Passport
📘 My Health Passport PATIENT-OWNED JOURNAL
This is your record — not your hospital's. Log every visit, capture every question for next time, and watch your own trends. Many of you get care at more than one hospital, on more than one record system. This Passport travels with you. Future versions will let you import data directly from your patient portals (the "Blue Button" vision).
🩺Working With a Prepared Patient
Your patient is going through a structured, evidence-based course. Here's how to get the most out of every visit, reduce ED use, support the caregiver, and partner well. Built on the AHRQ SHARE Approach, the IOM teach-back method, NCCN Central Nervous System Cancer guidelines, AAN palliative-care guidance, the WHO 2021 CNS tumor classification, and Temel et al. (NEJM 2010) on early palliative care alongside disease-directed treatment.
The SHARE Approach — your 5-step playbook
Use these steps in any order. Cycle back. Use teach-back at every transition. Source: AHRQ Pub. No. 25-0005 (Oct 2024).
💬Teach-Back & Risk Communication
The two highest-yield, lowest-cost SDM techniques. Use both at every visit.
🔁 Teach-Back (1–2 min)
- "Just so I know I explained it well — what would you tell your spouse about why we're recommending temozolomide alongside radiation (or considering TTFields)?"
- Open-ended ("what" / "how"), not yes/no.
- If they get it wrong: "I must not have explained it well — let me try a different way." Then teach-back again.
- Use it for: seizure safety + driving rules, treatment plan + side-effect call triggers, when to call vs 911, palliative-care integration, advance care planning while capacity is clear.
- Document teach-back in your note — it's a quality measure and a billable element of care.
🔢 Communicating Numbers
- Use absolute risk, not relative. "13 out of 100" beats "13%" beats "1 in 8" beats "low risk."
- Keep denominators & timeframes constant when comparing options.
- Show, don't tell: icon arrays, Wong-Baker FACES, written summary.
- For lab / score numbers: give the action threshold, not just the value. "Your KPS dropped from 80 to 70 — under our threshold we usually re-image and reconsider treatment intensity."
⚠️Brain Tumor-Specific Clinical Guardrails
Diagnostic Workup
- Brain MRI with gadolinium for any new progressive headache pattern, new adult-onset seizure, focal deficit, or unexplained personality / cognitive change over weeks.
- Tissue diagnosis (resection, biopsy, or stereotactic biopsy) is the gold standard; molecular markers (IDH, MGMT, 1p/19q, ATRX, TERT, BRAF, NF1) drive treatment in glioma.
- Workup for metastatic disease if no known primary: chest/abdomen/pelvis imaging, dermatologic exam, age-appropriate cancer screening.
- Pre-treatment baseline: KPS, cognitive baseline (consider neuropsychology), pituitary endocrine panel if sellar/parasellar field, dental clearance before radiation/chemotherapy.
- Trial eligibility: assess at every decision point; ABTA TrialConnect / ClinicalTrials.gov.
Treatment
- Surgery: maximal safe resection; awake craniotomy with mapping for eloquent cortex; balance tumor removal vs function preservation.
- Radiation: IMRT or proton; SRS for small/boundary lesions; standard chemoradiation for high-grade glioma per NCCN.
- Chemotherapy: temozolomide for glioma (concurrent + adjuvant); PCV for selected oligodendrogliomas; TTFields (Optune) for selected glioblastoma.
- Targeted therapy: BRAF inhibitors for BRAF-mutant tumors; NTRK inhibitors for fusions; tumor-agnostic agents per molecular profile.
- Anti-seizure prophylaxis: levetiracetam most common (fewer interactions); dose for tumor-related seizures.
- Steroid management: lowest effective dose of dexamethasone; plan the taper; PCP prophylaxis (Bactrim) and bone protection if prolonged use.
- VTE prevention: brain tumor patients carry elevated DVT/PE risk; mechanical prophylaxis perioperatively; pharmacologic prophylaxis when safe; treat DVT/PE with anticoagulation per guideline.
- Early palliative-care referral for symptom management, advance planning, and quality of life — alongside disease-directed treatment, NOT instead of it.
- Survivorship plan: NCCN late-effects monitoring (cognitive, endocrine, vascular, second malignancy, mood) for cure-likely patients.
🌍Cultural Competence & Trust
Brain tumor outcomes vary by race, geography, and insurance. Black and Hispanic Americans face disparities in access to clinical trials, comprehensive cancer centers, and cutting-edge treatments. Rural patients face geographic barriers. Pediatric brain tumor is a distinct group treated at specialty centers. Bias in diagnosis, trial enrollment, and access is well documented. Repair starts in your office.
- Start with belief. When a family says "something's different — personality, judgment, words," document, image, and refer. Subtle frontal-lobe and temporal-lobe presentations are often initially attributed to stress, depression, or aging.
- Ask about their model. "What do you and your family think is happening? What changes — headache, vision, balance, cognition, personality — have you noticed in recent weeks to months?" Use that language.
- Use qualified medical interpreters — never family, never minor children except in true emergencies. Treatment-consent conversations must be done in the patient's primary language; this is especially important for prognosis discussions.
- Invite the caregiver in. With patient consent — decisions about treatment intensity, clinical-trial enrollment, palliative-care timing, and advance care planning are family decisions in many cultures.
- Name the bias. "I know access to comprehensive cancer centers and clinical trials is uneven. We track that here, and you can tell me if anything feels off."
🏥Customize for Your Institution
Clone this course and replace the highlighted blocks with your own information. Each editable field below is a placeholder — change it once and it propagates through the patient view.
📞 What Should Replace the When-to-Call Block
- 24/7 oncology / neuro-oncology on-call number
- Cancer center outpatient hours & address
- Oncology specialty pharmacy line (chemo + steroids)
- Palliative-care team direct line
- ABTA local resources / regional support contact
- Patient portal login URL with caregiver proxy
👤 Who Is Your Oncology Care Navigator?
- Name, role, photo, calendly/booking link.
- What teach-back / device check-ins they own (treatment-cycle adherence, seizure log, TTFields wear-time, infusion logistics, palliative-care visit prep).
- How patients and care partners reach them between visits.
- How they handle treatment triage, prior-auth navigation, and trial-eligibility checks.
📚 Add Your Own Modules
- Your clinical trial protocols (TTFields, immunotherapy, targeted-therapy trials, observational cohorts).
- Oncology nurse navigator onboarding letter.
- Insurance & financial-aid pathways (especially chemo / TTFields copay assistance, foundation grants).
- Local peer support partners (ABTA peer mentor program, brain-tumor survivor groups, caregiver support groups).
🎨 Re-skin in 2 Lines of CSS
--inst-primary: your brand color- Replace the FFH × American Brain Tumor Association × [Your Institution] cobrand in the hero
- Drop in your logo PNG (white version) — same 48px height as FFH logo
📚 Evidence Base — what this course is built on
- AHRQ SHARE Approach — 5-step shared decision making framework. AHRQ Pub. 25-0005, Oct 2024. ahrq.gov/sdm
- AHRQ Health Literacy Universal Precautions Toolkit (3rd ed.) — teach-back, plain language, accessible materials. AHRQ Pub. 23-0075, March 2024.
- American Brain Tumor Association — Patient + Family Resources — epidemiology, equity, peer-mentor program, ABTA helpline, TrialConnect.
- NCI — Adult Brain Tumors PDQ — comprehensive patient and clinician summaries, trial registry, treatment guidelines.
- NCCN Central Nervous System Cancer Guidelines — disease-specific staging, treatment, and survivorship recommendations updated annually.
- WHO 2021 CNS Tumor Classification — molecular markers central to diagnosis (IDH, MGMT, 1p/19q, ATRX, TERT, BRAF, NF1, etc.).
- Temel et al. (NEJM 2010) — landmark trial of early palliative care alongside oncology — improved symptom control, quality of life, and survival; replicated in brain tumor settings.
- Stupp protocol (NEJM 2005) — concurrent + adjuvant temozolomide with radiation became the standard for glioblastoma.
- EF-14 trial (Stupp et al., JAMA 2017) — TTFields (Optune) added to standard chemoradiation extended survival in selected glioblastoma.
- AAN Palliative Care Guidance — early integration alongside disease-directed treatment in serious neurologic illness.
- AHRQ PEMAT — Patient Education Materials Assessment Tool. Used to grade understandability & actionability.
- Stanford Chronic Disease Self-Management Program (CDSMP) — peer-led, self-efficacy backbone of the Tier 3 advocacy work.
- FFH Prepared Patient · Multiple Sclerosis course — sister long-tail neuro course; both connect to the upstream vascular cluster Module 7 cross-reference where applicable.
Course content is educational and not a substitute for medical advice from your own clinicians. Institutions cloning this course are responsible for accuracy of all customized blocks.