Annual Alström Syndrome Review Checklist

Once a year, do a comprehensive review covering every body system, every life domain, and every administrative item that matters in Alström care. This checklist makes sure nothing falls through the cracks across years of complex care.

Best done either at the start of a calendar year, or on the anniversary of diagnosis. Allow 1–2 hours, ideally with a partner or care team member.

How to use this checklist

1. Set aside dedicated time — this isn't a 5-minute task

2. Have your care binder available — you'll reference it frequently

3. Mark items complete as you confirm them

4. Schedule action items as you identify gaps

5. Update relevant documents (medical summary, contact list, etc.)

6. Save the completed checklist in your care binder for next year's reference

Section 1 — Surveillance compliance review

Cardiology

• ☐ Echocardiogram done in last 12 months
• ☐ EKG done in last 12 months
• ☐ Cardiac MRI per schedule (typically every 2-3 years)
• ☐ Holter monitor if indicated
• ☐ BNP / NT-proBNP per schedule
• ☐ Cardiology visit completed
• ☐ Heart medications reviewed
• ☐ Next cardiology appointment scheduled

Anything overdue? _________________________________________

Ophthalmology

• ☐ Visual acuity tested in last 12 months
• ☐ OCT done in last 12 months
• ☐ Fundus exam done in last 12 months
• ☐ Visual fields done in last 12 months (where feasible)
• ☐ ERG done in last 1–2 years
• ☐ Tinted lens / vision aids reviewed
• ☐ Low-vision specialist visit (if relevant)

Anything overdue? _________________________________________

Audiology

• ☐ Audiogram done in last 12 months
• ☐ OAE / tympanometry per schedule
• ☐ Speech audiometry done
• ☐ Hearing aids / cochlear implants verified and adjusted
• ☐ Audiology visit completed
• ☐ FM/DM system functioning

Anything overdue? _________________________________________

Endocrinology / Metabolic

• ☐ HbA1c done in last 12 months (more often if diabetic)
• ☐ Fasting glucose, fasting insulin
• ☐ Lipid panel including triglycerides
• ☐ Thyroid function (TSH, free T4)
• ☐ For women: menstrual / hormonal review
• ☐ Endocrinology visit completed
• ☐ Diabetes regimen reviewed
• ☐ Bone density (DEXA) if applicable

Anything overdue? _________________________________________

Nephrology

• ☐ Creatinine, eGFR done in last 12 months
• ☐ Urinalysis with microalbumin
• ☐ BP measurements documented
• ☐ Nephrology visit if eGFR < 60

Anything overdue? _________________________________________

Hepatology / GI

• ☐ Liver function tests done in last 12 months
• ☐ Abdominal ultrasound per schedule
• ☐ FibroScan if applicable
• ☐ Hepatology visit if indicated

Anything overdue? _________________________________________

Pulmonology / Sleep

• ☐ Sleep study or assessment if symptoms present
• ☐ CPAP / BiPAP device check (mask, pressure, compliance)
• ☐ Pulmonary function tests if applicable

Anything overdue? _________________________________________

Mental Health

• ☐ Mental health screening or therapy attendance
• ☐ Caregiver mental health check
• ☐ Crisis plan reviewed (see Crisis Plan tool when published)

Anything overdue? _________________________________________

Other specialists (per individual situation)

• ☐ Urology (if applicable): _____________________
• ☐ Orthopedics (if scoliosis or other): _________
• ☐ Dental: _____________________
• ☐ Other: _____________________

Section 2 — Medications review

Comprehensive medication audit

• ☐ Current medication list is updated and accurate
• ☐ All medications reviewed with prescribing physician
• ☐ All prescriptions current and refilled
• ☐ Side effects discussed and documented
• ☐ Drug interactions checked
• ☐ Generic substitutions reviewed for cost savings
• ☐ Patient assistance programs reviewed if cost is a factor
• ☐ Pharmacy contact information current

Specific concerns

• ☐ Any medications adjusted in last year
• ☐ Any medications discontinued
• ☐ Any medications that aren't working as expected
• ☐ Any medications causing side effects to address

Notes for next medical visit: _____________________________

Section 3 — Lifestyle and self-management

Daily life functions

• ☐ Sleep is adequate
• ☐ Nutrition is generally healthy
• ☐ Physical activity is happening at appropriate level
• ☐ Mental health is supported
• ☐ Social connections are maintained

Adaptations and equipment

• ☐ Vision aids are current and functioning
• ☐ Hearing equipment is current and functioning
• ☐ Mobility aids (cane, etc.) are current
• ☐ CGM / insulin pump (if applicable) functioning
• ☐ CPAP / BiPAP (if applicable) functioning
• ☐ Home environment supports needs

Anything to update or replace? ____________________________

Section 4 — Care coordination

Care team review

• ☐ All specialists on the care team are still appropriate
• ☐ Specialist contact list updated
• ☐ Pediatrician / primary care relationship is working
• ☐ Center of Excellence visit scheduled (annually or biennially)
• ☐ Multidisciplinary coordination is happening
• ☐ Communication between specialists is functioning

Records

• ☐ Care binder is updated with last year's records
• ☐ Test results are filed
• ☐ Medical summary is current
• ☐ Specialist letters reviewed

Care binder maintenance

• ☐ Binder is well-organized
• ☐ Old records archived
• ☐ Quick-reference section accessible
• ☐ ER quick-reference card current

Section 5 — Insurance and financial

Insurance review

• ☐ Insurance coverage active and verified
• ☐ Specialist coverage confirmed
• ☐ Medication coverage confirmed
• ☐ Equipment / DME coverage confirmed
• ☐ Out-of-pocket maximum status reviewed
• ☐ Open-enrollment changes considered (during enrollment season)
• ☐ Any denied claims appealed or resolved

Disability benefits (US)

• ☐ SSDI / SSI status confirmed
• ☐ Medicaid waiver status confirmed
• ☐ ABLE account contributions on track
• ☐ Re-determinations completed if requested

Disability benefits (UK)

• ☐ PIP status confirmed and review timeline known
• ☐ Carer's Allowance reviewed
• ☐ Universal Credit / ESA status

Financial planning

• ☐ Special needs trust reviewed (if applicable)
• ☐ Tax documents organized for medical expenses
• ☐ Patient assistance programs maintained
• ☐ Charity / grant funding for specific needs explored

Section 6 — Education / employment

For school-age children

• ☐ IEP / 504 / EHCP reviewed and updated
• ☐ Annual IEP meeting scheduled
• ☐ TVI services adequate
• ☐ Audiology support adequate
• ☐ Diabetes management plan current
• ☐ Cardiac restrictions current
• ☐ School emergency plan reviewed
• ☐ Field trip / overnight accommodations arranged
• ☐ Transition planning underway (high school)

For adults

• ☐ Workplace accommodations effective
• ☐ Vocational rehabilitation engagement reviewed
• ☐ Career goals reviewed
• ☐ Education / training current
• ☐ Disability accommodations updated as needed

Section 7 — Family and relationships

Family wellbeing

• ☐ Couple / partnership health
• ☐ Sibling support and time
• ☐ Extended family communication
• ☐ Friendships maintained
• ☐ Community connections active
• ☐ Religious / spiritual life as desired

Patient organization engagement

• ☐ Connection with ASI / ASUK / Alström Angels active
• ☐ Family events / conferences considered
• ☐ Newsletter subscriptions current
• ☐ Peer connections maintained

Mental health

• ☐ Affected family member mental health
• ☐ Caregiver mental health
• ☐ Sibling mental health
• ☐ Therapy / counseling current as needed
• ☐ Medication for mental health current as needed

Section 8 — Future planning

Advance directives

For adults:

• ☐ Advance directive / living will
• ☐ Healthcare proxy / power of attorney
• ☐ POLST or MOLST if applicable
• ☐ Mental health advance directive if applicable

Legal documents

• ☐ Will (for adults)
• ☐ Special needs trust (if applicable)
• ☐ Guardianship plans for children
• ☐ Letters of intent

Genetic / family planning

• ☐ Genetic counseling visit if changes
• ☐ Sibling testing reviewed
• ☐ Family planning conversations as relevant

Section 9 — Research and trials

• ☐ Connection to ASI registry maintained
• ☐ Aware of current clinical trials
• ☐ Connection to research opportunities at Center of Excellence
• ☐ Research updates from patient organizations reviewed

Section 10 — Self-care for caregivers

For parents and other caregivers:

• ☐ My own primary care visits up to date
• ☐ My own mental health supported
• ☐ My own physical activity / sleep / nutrition adequate
• ☐ Respite care has happened in last year
• ☐ Friendships outside the medical orbit maintained
• ☐ Personal interests / hobbies have time

Action items — to schedule in next 30 days

After reviewing the checklist, list the action items that need attention:

1. ___________________________________________  By: ____________
2. ___________________________________________  By: ____________
3. ___________________________________________  By: ____________
4. ___________________________________________  By: ____________
5. ___________________________________________  By: ____________
6. ___________________________________________  By: ____________

Annual review summary

═══════════════════════════════════════════════════════════════
  ANNUAL ALSTRÖM REVIEW — Year: ____________
═══════════════════════════════════════════════════════════════

  PATIENT NAME: ___________________________________________
  CARE BINDER OWNER: ______________________________________
  REVIEW DATE: ____________________________________________
  REVIEW BY: ______________________________________________

  WHAT WENT WELL THIS YEAR:
  __________________________________________________________
  __________________________________________________________

  WHAT WAS HARDER THIS YEAR:
  __________________________________________________________
  __________________________________________________________

  KEY MEDICAL CHANGES:
  __________________________________________________________
  __________________________________________________________

  CARE TEAM CHANGES:
  __________________________________________________________

  ACCOMPLISHMENTS / MILESTONES:
  __________________________________________________________

  FOCUS FOR NEXT YEAR:
  1. ________________________________________________________
  2. ________________________________________________________
  3. ________________________________________________________

  NEXT REVIEW SCHEDULED FOR: ______________________________
═══════════════════════════════════════════════════════════════

File this completed review in your care binder.

Tips for an effective annual review

• Don't skip even when busy. This review prevents bigger problems by catching small issues.
• Do it together. Both partners. The patient (when age-appropriate). The care coordinator.
• Be honest. This is a private review. Acknowledge what isn't working.
• Schedule action items immediately. Don't end the review without a follow-up calendar.
• Compare to last year's review. Patterns emerge.
• Celebrate progress. What worked. What got easier. What was achieved.
• Take a breath after. It's a lot to look at.

Frequently Asked Questions

How long does this take?

Allow 1–2 hours for the first time. Subsequent annual reviews go faster — maybe 60–90 minutes.

Should we do this with our medical team?

You can. Many primary care providers welcome this kind of comprehensive review at an annual visit. Some Center-of-Excellence visits do this as part of the visit structure.

What if we identify many gaps?

That's fine. The point of the review is to find them. Schedule action items over the next 30–60 days; don't try to fix everything at once.

Can my older child / teen do this themselves?

Yes — and they should, gradually. By late teens, the affected person should be involved in this review. By young adulthood, they own it.

Related reading

• Care Binder Template
• Personalized Surveillance Schedule
• The Care Team for Alström Syndrome
• Newly Diagnosed With Alström Syndrome? First Steps
• Caregiver Burnout in Alström Syndrome Families

This checklist is for informational and self-management purposes. Adapt to your situation.