# Specialist Appointment Prep Worksheets
Every Alström specialist appointment is a chance to ask the right questions, share the right information, and walk out with the right plan. These worksheets help you prepare efficiently for each type of visit. Print, fill in, and bring.
For each specialty: pre-visit prep questions, key information to bring, questions to ask, and a post-visit summary template.
Universal pre-visit preparation (use for all visits)
Before any specialist visit, gather:
- ☐ Updated medical summary (1-page, current)
- ☐ Current medication list with doses
- ☐ Recent test results from this and other specialists (last 12 months)
- ☐ Any new symptoms or concerns since last visit
- ☐ List of questions you want to ask (use specialty worksheet below)
- ☐ Care binder (full or relevant sections)
After every visit:
- ☐ Visit summary written within 24 hours
- ☐ Follow-up appointments scheduled
- ☐ Any new tests or referrals booked
- ☐ Care binder updated
CARDIOLOGY APPOINTMENT WORKSHEET
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CARDIOLOGY VISIT PREP
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Patient: ________________ Visit date: _______________
Cardiologist: __________________________________________
PRE-VISIT QUESTIONS TO ANSWER (information for your team):
─────────────────────────────────────────────────────────
Recent symptoms (since last visit):
☐ New or worse breathlessness ☐ Fatigue ☐ Swelling
☐ Chest discomfort ☐ Palpitations ☐ Dizziness
☐ Sleep disturbance ☐ Reduced exercise tolerance
Other: ___________________________________________________
Daily life impact:
Exercise tolerance: ____________________________________
Sleep: __________________________________________________
Daily activities: _______________________________________
Recent weights (if tracking): __________________________
Recent blood pressures: _________________________________
Any medication changes since last visit?
__________________________________________________________
Any hospital visits or ER visits since last visit?
__________________________________________________________
QUESTIONS TO ASK YOUR CARDIOLOGIST:
─────────────────────────────────────────────────────────
1. How does this echocardiogram compare to last year's?
2. What's my current ejection fraction?
3. Are there changes in heart medications we should consider?
4. How is my [BNP / NT-proBNP] trending?
5. When is the next surveillance interval — annual?
more often?
6. Should I be doing anything different in daily life?
7. What symptoms should prompt a call before next visit?
8. Are there clinical trials or new treatments to consider?
9. Any changes to exercise recommendations?
10. [Your specific question]
KEY METRICS TO RECORD AFTER VISIT:
─────────────────────────────────────────────────────────
Ejection fraction: ___________%
Chamber dimensions: ___________________________________
BNP / NT-proBNP: ___________
EKG findings: ___________________________________
Medication changes: ___________________________________
Next appointment: ___________________________________
RED FLAGS to call about between visits:
─────────────────────────────────────────────────────────
• Sudden weight gain (2-3 lb in 1-2 days)
• New or worsening shortness of breath
• Difficulty sleeping flat / needing more pillows
• New chest pain or pressure
• Palpitations with other symptoms
• Fainting or near-fainting
═══════════════════════════════════════════════════════════════OPHTHALMOLOGY APPOINTMENT WORKSHEET
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OPHTHALMOLOGY VISIT PREP
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Patient: ________________ Visit date: _______________
Ophthalmologist: ________________________________________
PRE-VISIT NOTES:
─────────────────────────────────────────────────────────
Vision changes since last visit:
☐ Reading text is harder
☐ Recognizing faces is harder
☐ Increased difficulty in bright light
☐ Increased difficulty in dim light
☐ Visual field changes (peripheral vision)
☐ New floaters or flashes
☐ Eye pain or discomfort
Other: ___________________________________________________
Current visual aids in use:
☐ Tinted lenses (Rx and tint type)
☐ Magnifiers (handheld / electronic)
☐ Screen reader / Braille display
☐ Specific apps
Other: ___________________________________________________
School / work / daily-life impact:
__________________________________________________________
QUESTIONS TO ASK:
─────────────────────────────────────────────────────────
1. How does today's exam compare to last year?
2. What's the rate of change?
3. Are we doing everything to support remaining vision?
4. Should we update tinted lens prescription?
5. Should we see a low-vision specialist this year?
6. Are there new vision aids worth trying?
7. Should we be concerned about [specific symptom]?
8. When should the next ERG be?
9. Are there clinical trials for cone-rod dystrophy or
ALMS1 we should know about?
10. [Your specific question]
KEY METRICS TO RECORD:
─────────────────────────────────────────────────────────
Visual acuity: Right eye __________ Left eye __________
Visual field: Right eye __________ Left eye __________
ERG findings: _____________________________________
OCT findings: _____________________________________
Fundus exam: _____________________________________
Color vision: _____________________________________
Photophobia level: _____________________________________
Next appointment: _____________________________________
═══════════════════════════════════════════════════════════════AUDIOLOGY APPOINTMENT WORKSHEET
═══════════════════════════════════════════════════════════════ AUDIOLOGY VISIT PREP ═══════════════════════════════════════════════════════════════ Patient: ________________ Visit date: _______________ Audiologist: ____________________________________________ PRE-VISIT NOTES: ───────────────────────────────────────────────────────── Hearing changes since last visit: ☐ Asking "what?" more often ☐ Difficulty in noisy environments ☐ Difficulty on phone calls ☐ Turning up TV / device volume ☐ Tinnitus (new or worse) ☐ Balance / dizziness Other: ___________________________________________________ Current hearing devices: ☐ Hearing aids — model/age: __________________________ ☐ Cochlear implant — model/processor: ________________ ☐ FM / DM system: _____________________________________ ☐ Other accessories: __________________________________ Issues with current devices: __________________________________________________________ School / work / daily-life impact: __________________________________________________________ QUESTIONS TO ASK: ───────────────────────────────────────────────────────── 1. How does this audiogram compare to last year's? 2. What's the rate of progression? 3. Should we adjust hearing aid settings? 4. Are we approaching cochlear implant candidacy? 5. Are there new technologies worth trying? 6. How are speech understanding scores? 7. Should we update the school/work FM system? 8. What about tinnitus management? 9. [Your specific question] KEY METRICS TO RECORD: ───────────────────────────────────────────────────────── Audiogram: PTA right ____ PTA left ____ Word recognition: Right ____% Left ____% Hearing aid set: ____________________________________ Tympanometry: Normal / abnormal — describe: __________ OAE: Present / absent Next appointment: ____________________________________ ═══════════════════════════════════════════════════════════════
ENDOCRINOLOGY APPOINTMENT WORKSHEET
═══════════════════════════════════════════════════════════════ ENDOCRINOLOGY VISIT PREP ═══════════════════════════════════════════════════════════════ Patient: ________________ Visit date: _______________ Endocrinologist: ________________________________________ PRE-VISIT NOTES: ───────────────────────────────────────────────────────── Diabetes / metabolic status: Recent HbA1c: _____ (date: _____) Goal: _____ Average daily glucose: __________ Time in range (CGM): ____________% Insulin TDD: ________ units/day Hypoglycemia frequency: __________ Symptoms / concerns: ☐ Frequent low blood sugars ☐ Frequent high blood sugars ☐ Increased thirst / urination ☐ Weight change (gain / loss) ☐ Fatigue / energy changes ☐ Pubertal concerns (in children) ☐ Menstrual irregularity (in women) ☐ Mood changes Other: ___________________________________________________ Current diabetes regimen: Insulin: __________________________________________________ Other diabetes meds: ______________________________________ CGM: _____________________ Pump: _____________________ Other endocrine concerns (thyroid, growth, hormones): __________________________________________________________ QUESTIONS TO ASK: ───────────────────────────────────────────────────────── 1. Is my HbA1c at goal? 2. Should we adjust insulin or other medications? 3. How are my lipids (especially triglycerides)? 4. How is my thyroid function? 5. Are there new diabetes medications worth trying? 6. How is my insulin resistance pattern? 7. Should I consider GLP-1 or SGLT2 medications? 8. (Children) Any concerns about growth or puberty? 9. (Women) Any concerns about PCOS / menstrual regulation? 10. [Your specific question] KEY METRICS: ───────────────────────────────────────────────────────── HbA1c: _____ (target ____) Fasting glucose: _____ Triglycerides: _____ LDL / HDL: _____ / _____ TSH / Free T4: _____ / _____ Other: __________________________________________ Medication changes: ____________________________________ Next appointment: ____________________________________ ═══════════════════════════════════════════════════════════════
GENETICS APPOINTMENT WORKSHEET
═══════════════════════════════════════════════════════════════ CLINICAL GENETICS / GENETIC COUNSELING VISIT PREP ═══════════════════════════════════════════════════════════════ Patient: ________________ Visit date: _______________ Geneticist / Counselor: ________________________________ PRE-VISIT NOTES: ───────────────────────────────────────────────────────── Family events since last visit: ☐ Pregnancy planning / new pregnancy ☐ Sibling testing question ☐ Extended family member testing question ☐ New diagnosis in family ☐ Variant reclassification news Other: ___________________________________________________ Updates I want to share: __________________________________________________________ __________________________________________________________ QUESTIONS TO ASK: ───────────────────────────────────────────────────────── 1. Are there any new findings about ALMS1 we should know? 2. Have my child's variants been re-classified? 3. Should we re-analyze previously sequenced data? 4. Are there new clinical trials or research opportunities? 5. Should other family members be tested? 6. (For pregnancy planning) What are the testing options? 7. (For pre-symptomatic siblings) When should we test them? 8. [Your specific question] ITEMS TO BRING: ───────────────────────────────────────────────────────── ☐ Updated family pedigree (if changes) ☐ Recent test results from other specialists ☐ List of family members who've been tested ☐ Specific questions about variants KEY POINTS TO RECORD: ───────────────────────────────────────────────────────── Status of variants: _____________________________________ Family testing recommendations: _________________________ Research opportunities: _________________________________ Next genetics appointment: ______________________________ ═══════════════════════════════════════════════════════════════
NEPHROLOGY APPOINTMENT WORKSHEET
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NEPHROLOGY VISIT PREP
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Patient: ________________ Visit date: _______________
Nephrologist: __________________________________________
PRE-VISIT NOTES:
─────────────────────────────────────────────────────────
Recent kidney function:
eGFR (most recent): _____ (date: _____)
Creatinine: _____
Urine protein: _____
BUN: _____
Symptoms:
☐ Fatigue ☐ Swelling ☐ Reduced urine output
☐ Itching ☐ Loss of appetite ☐ Mental fog
Other: ___________________________________________________
Blood pressure tracking:
__________________________________________________________
Medication changes since last visit:
__________________________________________________________
QUESTIONS:
─────────────────────────────────────────────────────────
1. How is my eGFR trending?
2. What stage CKD am I in?
3. Are we doing everything to slow progression?
4. Are there medication adjustments I should make?
5. Should we change anything about my diet?
6. (Advanced CKD) Should we discuss dialysis or
transplant planning?
7. [Your specific question]
KEY METRICS:
─────────────────────────────────────────────────────────
eGFR: _____ (CKD stage _____)
Creatinine: _____
Urine ACR: _____
Hemoglobin: _____
Calcium / phos: _____ / _____
PTH: _____
Vitamin D: _____
Medications and doses:
_________________________________________________________
Next appointment: _______________________________________
═══════════════════════════════════════════════════════════════HEPATOLOGY / GASTROENTEROLOGY APPOINTMENT WORKSHEET
═══════════════════════════════════════════════════════════════ HEPATOLOGY / GI VISIT PREP ═══════════════════════════════════════════════════════════════ Patient: ________________ Visit date: _______________ Provider: ______________________________________________ PRE-VISIT NOTES: ───────────────────────────────────────────────────────── GI / liver concerns: ☐ Reflux / heartburn ☐ Abdominal pain ☐ Constipation ☐ Nausea ☐ Yellowing of skin / eyes (jaundice) ☐ Easy bruising / bleeding ☐ Confusion / mental changes ☐ Fatigue Other: ___________________________________________________ Recent imaging or tests: __________________________________________________________ Diet / alcohol: __________________________________________________________ Medications affecting liver: __________________________________________________________ QUESTIONS: ───────────────────────────────────────────────────────── 1. How are my liver function tests? 2. How does my abdominal ultrasound look? 3. (If applicable) What does the FibroScan show? 4. Am I at risk of progression to cirrhosis? 5. Should I avoid any specific medications? 6. Should we adjust nutrition recommendations? 7. [Your specific question] KEY METRICS: ───────────────────────────────────────────────────────── AST / ALT: _____ / _____ Alkaline phos: _____ Bilirubin: _____ Albumin: _____ INR: _____ Platelets: _____ FibroScan stiffness: _____ (if applicable) Imaging findings: ____________________________________ Next appointment: _______________________________________ ═══════════════════════════════════════════════════════════════
PULMONOLOGY / SLEEP MEDICINE APPOINTMENT WORKSHEET
═══════════════════════════════════════════════════════════════ PULMONOLOGY / SLEEP MEDICINE PREP ═══════════════════════════════════════════════════════════════ Patient: ________________ Visit date: _______________ Provider: ______________________________________________ PRE-VISIT NOTES: ───────────────────────────────────────────────────────── Sleep / breathing concerns: ☐ Loud snoring ☐ Witnessed apneas ☐ Daytime sleepiness ☐ Morning headaches ☐ Restless sleep ☐ Difficulty concentrating ☐ Persistent cough ☐ Wheezing ☐ Frequent infections ☐ Shortness of breath Other: ___________________________________________________ CPAP/BiPAP use (if applicable): Hours per night: _________ Comfort level: _________ Issues: ________________________________________ QUESTIONS: ───────────────────────────────────────────────────────── 1. How is my sleep apnea control? 2. Are CPAP settings still appropriate? 3. Should we adjust pressure or device? 4. Should we repeat sleep study? 5. (Adults) Any signs of pulmonary disease? 6. (Children) How are recurrent infections being managed? 7. [Your specific question] KEY METRICS: ───────────────────────────────────────────────────────── AHI (apnea-hypopnea index): _____ Oxygen saturation: _____ CPAP pressure settings: _____ Compliance data: _____% nights >4 hours Next appointment: _______________________________________ ═══════════════════════════════════════════════════════════════
After every visit — visit summary
Within 24 hours of any specialist visit:
═══════════════════════════════════════════════════════════════ VISIT SUMMARY ═══════════════════════════════════════════════════════════════ Date: _________________________________________ Specialty: _________________________________________ Provider: _________________________________________ KEY FINDINGS: __________________________________________________________ __________________________________________________________ CHANGES TO PLAN: __________________________________________________________ __________________________________________________________ NEW MEDICATIONS / DOSE CHANGES: __________________________________________________________ DISCONTINUED: __________________________________________________________ REFERRALS / NEW APPOINTMENTS: __________________________________________________________ TESTS ORDERED (with timing): __________________________________________________________ WHEN TO CALL THIS PROVIDER BEFORE NEXT VISIT: __________________________________________________________ NEXT APPOINTMENT: ______________________________________ QUESTIONS THAT EMERGED FOR NEXT TIME: __________________________________________________________ ═══════════════════════════════════════════════════════════════
File this in the appropriate care binder section.
Tips for getting the most from specialist visits
Bring a second person
A second person catches what you miss, asks questions you forget, and provides emotional support. Ideal for important visits.
Take notes — or have someone take them
You can't remember everything. Notes during the visit. Some providers allow recording (with permission); ask first.
Repeat back what you've heard
"So just to confirm, you want me to [action] and follow up in [timeframe]." This catches misunderstandings.
Ask for printed summaries
Many providers can give you a printed summary at the end of the visit. Take it.
Set up patient portal access
Most major systems have patient portals where you can see test results, communicate with providers, and request refills. Use it.
Get familiar with your medical records
Periodically review your records for errors. Request corrections in writing.
Don't be afraid to push back politely
If something doesn't feel right, ask for clarification or a second opinion. You're advocating for someone with a complex condition.
Frequently Asked Questions
Should I print all these worksheets?
Pick the ones for the visits you have coming up. No need to print all eight upfront.
What if I don't have time to fill these out?
Fill what you can. Even 10 minutes of pre-visit prep makes a meaningful difference. The point is not perfection — it's better preparation than nothing.
Can my child fill this out as they get older?
Yes — and they should. Gradually involving older children and teens in their own visit prep builds the self-advocacy they'll need as adults.
What if my provider rushes the visit?
Bring your key questions written down. Ask them directly. If a visit feels too rushed for genuine engagement, raise the concern with the practice or consider another provider.
Related reading
- How to Prepare for an Alström Specialist Appointment
- The Care Team for Alström Syndrome
- Care Binder Template
- Personalized Surveillance Schedule
- ER Quick-Reference Card
These worksheets are for organizational and informational purposes. Adapt to your family and providers.