Introduction:

People with OI usually require the services of a health care team that includes a primary care physician (PCP) and several specialists. The role of the primary care doctor or PCP is to care for the whole person in terms of overall health. For children, the pediatrician or family physician also deals with growth and development issues. Children and adults with OI have the same general health needs as other people. For example children need immunizations and may get the usual childhood illnesses. Adults may face minor illnesses and have the same risks for serious health problems such as diabetes, cancer and heart disease as other adults.

General Principles for Good Communication

* Keep detailed medical records. Keep lists of fractures, how they occurred and how they were treated. Include developmental milestones, immunizations, illnesses, surgeries, medical treatments, medicines, allergies, urine calcium, bone density, other routine tests and complications from surgery, anesthesia or treatments.

* Keep a brief summary of key points in the medical history to share with a new doctor or when traveling. Include surgeries and complications.

* Find a doctor you are comfortable talking with and who listens to you.

* Find a doctor who treats you with respect, and who is interested in the information on OI that you provide.

* Find a doctor who is a knowledgeable and skilled physician with some expertise with OI or willing to consult with medical literature and specialists to acquire expertise.

* Plan ahead for emergencies. Include information about how to contact the doctor, which hospital to go to, what to do on a weekend or holiday, and transportation. Discuss with your doctor what to do if your primary care physician is unavailable or on vacation.

* Work in partnership with your doctor; follow through on prescribed medications or therapies and provide complete and honest reports to the doctor.

* When you answer your doctor's questions, do not exaggerate, deny, or deliberately omit information.

* Be an attentive listener.

Prepare for the Appointment

* Record any symptoms. Be specific about date, time, location and type of pain, and temperature. It can help to keep notes on a calendar or in a diary.

* Prepare a list of questions.

* Ask questions in order of importance. Never leave the most important for last.

* Bring paper and pencil to write down the doctor's answers.

* Maintain a list of all drugs, drug dosage, vitamins, supplements and alternative treatments you are using and provide this information to your doctor at each visit.

* Bring copies of any resources you have found, including medical literature or Internet resources.

The following list of questions is designed to help you have a productive conversation with your doctor. It is not a script. Review this list before your appointment and select the questions that are important to you. Be sure to listen carefully during your appointment. Your doctor may answer many of these questions even before you ask them.

Questions about symptoms:

* If the doctor dismisses a symptom by saying "It's probably the OI," ask how the symptom would be evaluated if you did not have OI.

* If a symptom is persistent or troubling, ask the doctor if it is being treated in the same manner as it would for a patient who does not have OI.

Questions about your general health:

* What can I do in terms of diet that will help me stay healthy?

* What can I do in terms of exercise that will help me stay healthy?

* What other steps toward a healthy life style do you recommend?

After hearing a diagnosis:

* What does this mean?

* What are the possible treatments?

* What can I expect might happen next? (What is the prognosis?)

* What can I do to prevent this from happening?

* Is it necessary to see a specialist?

When medications, tests, or treatments are prescribed:

* What is the exact name of the drug, test or treatment?

* Why is it needed?

* Will my size influence the dosage amount you prescribe?

* What are the costs, risks and benefits?

* Are there any alternatives?

* What happens to me if nothing is done?

* How do I take this medicine?

* How do I prepare for this test?

* When will I get the test results?

* Will the type of orthopedic rods and other implants in my body interfere with this test? (Certain types of rods interfere with an MRI.)

* Will this treatment affect my bone mineral density?

* How should I take care of myself at home?

* What warning signs or side effects should be watched for?

When there is a referral to a specialist:

* What will the specialist do regarding this medical problem?

* Why is this person or type of doctor being recommended?

* Will the PCP send the necessary records, test results or x-rays directly to the specialist?

* Will the specialist keep the PCP informed about any new treatments?


Closing:

* How can I reach you if I have questions later?

* When should I return for my next appointment?

Be sure to view the OI Foundation's companion pieces in this series, including Talking With Your Doctor, Talking With Your Orthopedist, and How To Bring Out the Best In Your Health Care Team. These and many other healthcare resources are available online at www.oif.org or by calling (800) 981-2663.




This information is brought to you by the
NIH Osteoporosis and Related Bone Diseases~National Resource Center (ORBD~NRC)
and the Osteogenesis Imperfecta Foundation

National Institutes of Health
Osteoporosis and Related Bone Diseases
National Resource Center
1232 22nd St., NW
Washington, DC 20037-1292
Tel: 800/624-BONE or 202/223-0344
Fax: 202/293-2356, TYY: 202/466-4315
http://www.osteo.org
E-mail: orbdnrc@nof.org

The National Resource Center is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases with contributions from the National Institute of Child Health and Human Development, National Institute of Dental and Craniofacial Research, National Institute of Environmental Health Sciences, NIH Office of Research on Women's Health, Office of Women's Health, PHS, and the National Institute on Aging. The Resource Center is operated by the National Osteoporosis Foundation, in collaboration with the Paget Foundation and the Osteogenesis Imperfecta Foundation.