Guide

Preparing for a doctor visit

Appointments can be short. Write down what you want to ask and your symptoms in advance, so you do not forget anything.

Before the visit

Put the most important questions first.
Bringing a relative or friend makes it easier to take notes.
Take earlier reports and your medicine boxes, or photos of them.
Ask the doctor to explain again any term you do not understand.

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Disease or topicChoose from the list or type your own.Appointment dateDepartment or doctor (optional)What I most want to talk about at this visit

Symptom notes

DateSymptom or eventHow long did it last, what helped?

Medicines taken and doses

Ready-made questions

Tick the questions from our guides that fit your situation.

Newly diagnosed: first steps

What is the full name of the condition? What are its ORPHA code and ICD code? Can you give me this in writing? Which test was the diagnosis based on? Can I get a copy of the result and the report? How might this condition affect my child in the future? What do we need to monitor? Who will coordinate follow-up? Which other specialties do we need to see? How often will check-ups take place? Which tests will be repeated? Which symptoms mean we should go to the emergency department immediately? Is there a written plan or card for emergencies? Is this condition hereditary? Where can we go for genetic counseling? Could siblings or other relatives be affected? Do they need to be tested? If we want to have another child, which options should we discuss? Is there a center experienced with this condition, or somewhere you can recommend for a second opinion? Can you provide written information for the school and caregivers? Can you recommend a reliable source of information or a patient organization?

Joining clinical trials

What is the purpose of this trial? What phase is it in? Does the trial have ethics committee approval and TİTCK authorization? What is its registration number (KAP, NCT or CTIS)? Is there a placebo group? Will I be able to find out which group I am in? If I do not take part in the trial, which treatment will I continue to receive? How long will the trial last? How often will I need to come, and which tests will be done? What are the known possible side effects? If there is a problem, whom do I contact, and at which number? How are costs such as travel and accommodation covered? What does the insurance cover? If I leave the trial or the trial ends, what will happen to the medicine and to my follow-up? How can I find out the results?

Genetic tests

What question is this test trying to answer? Why did you choose this test? Could the test result change my child’s treatment or follow-up? If the result is negative or shows a variant of uncertain significance (VUS), what will the next step be? Do the mother and father or other relatives need to be tested as well? Are secondary findings reported in exome or genome testing? Can I choose not to learn about them? When will the result be ready? Who will explain it, and how? Is the test covered by SGK? Is there anything we have to pay? How long will my data and sample be kept? Will they be used in research? Can this data be re-examined in the future? What do we need to do for that?

Planning a pregnancy

How is the condition in our family inherited? What is the chance in the next pregnancy? Was the gene change passed on from us, or did it appear for the first time in our child? Where, and from whom, can we get genetic counseling? Do we both need a carrier test? Which test is suitable? Which test during pregnancy can look for the condition in our family? In which week is it done, and when will the result be ready? In our situation, what can NIPT show and what can it not show? Is PGT suitable for us? Is our condition on the SUT EK-2/K list? Do we meet SGK’s conditions for IVF and PGT? Which hospital issues the report? What are the risks and chances of success of IVF and PGT for us? Who can we turn to for emotional support while we make a decision?

Moving from pediatric to adult care

When should we start preparing for transition? At what age do you recommend that we move to an adult doctor? Can you recommend an adult doctor or center that knows my child’s condition? Can there be a joint appointment with the adult team before the handover? Can you prepare a short medical summary for us? Would you like to see my child alone for part of the appointment? Is there a named person who will look after us during the transition? Will the medicines my child takes affect pregnancy plans in the future; is genetic counseling needed? Who can we be referred to for mental health support? When should we apply for the adult report before ÇÖZGER ends?

Looking after yourself as a caregiver

As a caregiver, which checkups should I have for my own health? Who can I see about my sleeplessness and tiredness? Where can you refer me for psychological support or counseling? What should I teach the person who will take over my child’s care for a short time? What information should I prepare in writing for the person who will take over care in an emergency? How can I explain the condition to their brothers and sisters in a way that suits their age? Is there a patient organization or family group for this condition in our area? Which report is needed to use the day care service?

Rare disease at school

What symptoms should the school watch for in my child? Could you write a short health information and emergency note for the school? Does my child need medicines or care during school hours, and can the times be changed? Which physical education activities are suitable and which are not? Could you put this in the report? Can check-ups and treatments be planned to disrupt school as little as possible? What precautions are needed for my child to join a school trip? Do we need to apply to RAM for my child’s special educational needs? (to the teacher/school) When can I attend the BEP meeting, and can health adjustments be added to the BEP? (to the school) What type of report is needed for the LGS/YKS, and is the report registered in the e-rapor system? How, and how much, should we tell classmates about the condition? (to the school counselor)

Special diets and medical nutrition

Which foods are restricted in my child’s condition, and which are allowed? How often will blood levels be checked? Can we collect a drop of blood at home? Can you give us our sick-day plan in writing? When should we come to the hospital? Is the formula we use on SGK’s EK-4/B list? Which specialist will write the report, and when will it be renewed? How can we benefit from SGK payment for low-protein flour and products? How often should we measure weight and height? Could you prepare an information note or health plan for school? Is a referral to a speech and language therapist needed for swallowing difficulties? Could this supplement or natural product interfere with our diet?

Home care and medical devices

Is our patient eligible for home health care? Will you apply, or should we? How often will the home health team visit us? Can we get the visit plan? Which hospital, with which specialists, can issue the health board report for the device? Are the device type, settings and accessories written correctly in the report? How many hours does the device run on battery? What should we do during an outage? If the device breaks, where can we get a backup device and how quickly? As our child grows, when should the orthosis or wheelchair be renewed? Which report can we give to the distribution company? For which symptoms should we call you, and for which should we call 112? What should we pay special attention to at home to reduce the risk of infection?

Treatment abroad and travel

Is this treatment really not available in Türkiye? Who determines this? At which hospital can we get the health board report for treatment abroad? Will the need for a companion and an air ambulance be written in the report? Is sending only a sample enough for this test, or does the child need to travel? Which official body approved the proposed treatment? Is it part of a clinical trial? Could you consult a European Reference Network expert about our file? Could you give me a letter in English listing the active ingredient names of my medicines? Does my medicine need a cold chain? How should I store it on the way? Will I need extra oxygen during the flight? Could you fill in the MEDIF form? If a problem arises abroad, whom should I contact, and how should treatment continue?

For families without a diagnosis

Which tests have been done so far, and which have not been done yet? Can the exome or genome data be looked at again in the future? When and how? If new information comes up, who will let us know, and how? When should we come back? Would testing the mother and father too, or another method, help with the diagnosis? Which other departments would it be useful for our child to see? Which doctor will coordinate the follow-up? Can we apply for ÇÖZGER without a diagnosis? Which documents should we bring? Which symptoms would it help you for us to video or take notes on? How can we find out whether this test is covered by SGK? Is there a research study or registry program we could take part in?

Consanguinity and carrier status

Based on how closely my partner and I are related, how much does the chance change for our children? There is a known disease in our family; are we carriers too, and which test looks for this? How can we read the result of our premarital screening in e-Nabız, and what does the result not cover? Since we are related, is broader carrier screening right for us, and what are its limits? If the result is negative, how much chance remains? Which of our relatives would it be useful to inform, and where can we refer them? Which specialty should we see for genetic counseling, and how can we get a referral? What information about our family history should we gather before the appointment? What options do we have when planning a pregnancy, and which ones does SGK cover?

My own questions (one per line)

My notes for the doctor visit

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