[CICTD]
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The general practitionerDr. H. Boydens, general practitioner in Vichte, gave a lecture for the CIB-league department West-Vlaanderen concerning the relation between the family doctor and the patient and the role of the specialist. This is the report, together with questions of CICTD patients. |
| What kind of information concerning chronic inflammatory connective tissue diseases (CICTDs) can a patient expect from the general practitioner? |
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| If the general practitioner diagnoses or strongly suspects a CICTD out of a series of mild complaints, he will only provide basic information about these diseases. He will advise the patient to see a rheumatologist, which may not appear very evident. Who goes to a rheumatologist with complaints of fatigue, skin rashes and some pain here and there! After seeing the rheumatologist the patient may have many questions: What does he mean by that? What does it mean to me? Will I be ill for the rest of my life? It is the task of the general practitioner to answer these questions. It may also be important to refer the patient back to the specialist with certain questions. In this way, there is an interaction between the general practitioner and the specialist. |
| For a CICTD patient it is very useful to file his own dossier with reports and blood test results. Is the patient allowed to ask the general practitioner for this information? |
| Filing a dossier is indeed very useful and the patient may at all times ask the general practitioner for a copy of it. This dossier contains x-rays, analysis results, echographies, and an NMR (Nuclear Magnetic Resonance). It is important, however, to discuss the information with the family doctor to avoid misinterpretations.
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| Should the general practitioner be familiar with the family situation? |
| It is an advantage for the doctor to know the family situation and to see the patient in his daily environment. As such, he knows that e.g. a temporary fatigue is not a sign of a flare, but has to be ascribed to financial or relational problems, or to preoccupations about the children. |
| Why should a patient first consult the general practitioner instead of going directly to a specialist? |
| The general practitioner knows the patient's background and the returning complaints. He decides to refer the patient to the specialist if most of the risks of other diseases have been ruled out. In this way, unnecessary examinations which might bear risks- are not carried out, which is also a financial advantage.
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| What can the patient do to improve the co-operation between the general practitioner and the specialist? |
| Usually the general practitioner picks out the specialists himself, on the basis of their human qualities and the ease with which he can reach them. The choice of the specialist can be discussed with the patient. It is very important that the patient takes along a referral letter from the general practitioner. As such, the specialist knows that the general practitioner appreciates him and that he does not want to make a diagnosis without advice. The letter contains all kinds of information on which he can base his diagnosis. The specialist should also write a letter for the patient, preferably as soon as possible: as a short written explanation after the visit and a detailed report later. The patient may insist to send the report as soon as possible to the general practitioner. My advice is that you should not be afraid to ask your family doctor a referral letter every time you go to a specialist, and ask the specialist also for a letter. |
| Each drug has side effects and that worries me. |
| As a general physician, the family doctor knows many things about various diseases, but not into detail. He cannot give practical tips for specific diseases, nor can he meet assertions about the effectiveness of certain drugs. Therefore, support groups are more competent. The general practitioner based his research on lupus also on the information provided by the CIB-league.
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| There has to be a confidential relation between the general practitioner and the patient. Should I tell him if I did not take a certain drug or if I did not take enough of it? |
| The patient should tell his /her general practitioner if he /she took too much medication (e.g. asthma inhalers) and also if he /she took too little of it or not at all. The doctor may not notice it and certainly not in the beginning- and in case of a flare he will increase the dose unnecessarily or make the patient undergo unnecessary examinations. If the doctor is told about it, however, he can start up the medication again. CICTD patients should realise that they have to take their medication carefully. |
| What can I ask my general practitioner if I suspect to have a CICTD? |
| It needs to be mentioned that CICTDs are rare diseases. These disorders are sometimes suspected because of stories of an acquaintance, a TV-programme or a newspaper article. In this case, the patient reacts emotionally and needs to be supported. Firstly an anamnesis has to be made: the patient tells about his difficulties and the doctor asks specific questions about joint pains, muscle pains, headache, fatigue, fever. He writes all this down. At first this information may seem unclear, but later on there may be a pattern that points to a CICTD. Then he proceeds to a clinical (physical) examination: he feels, listens, watches. After that, additional examinations of the blood and skin are justified. Mostly this patient does not suffer from a CICTD, but from a viral infection, which most people interpret as 'he doesnt know' and they turn to another doctor who will do exactly the same examinations again. |
| Should a patient prepare a list with all those questions before visiting the general practitioner? |
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This can be recommended. The patient can give the physician a copy of it, so he can follow more easily. If the doctor does not have the time to discuss everything at length, he may ask the patient to make an appointment and come back when it is more convenient. The patient may ask the family doctor to write down all the details concerning medication, exercises, etc. because many people forget about it the minute they leave the consulting room. |
| When will a general practitioner refer a patient to a specialist? |
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After the general practitioner has excluded many things, but has kept enough elements to say: The risk of this patient of having a CICTD is 1 out of 10 or 20, then it is justified to refer the patient to a specialist. For the patient it is important to see the right specialist and that is why he/she should never follow the advice of laymen. |
| Is a patient allowed to open the referral letters? |
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The patient is allowed to do that, but it is not advisable. The doctors sometimes use expressions that might scare the patient unnecessarily and if the letter mentions something negative, the patient is not adequately informed and supported
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| My rheumatologist does not report to my general practitioner. How can I or my general practitioner try to change this politely? |
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In this situation the general practitioner has to write a referral letter with very concrete indications and questions, such as: Patient X has this disease. She has to take these medications. I diagnosed this and that. Could you give me some explanation? Could you check whether I may prescribe this drug, increase the dosage... The patient can give all his questions to the family doctor. The questions he cannot answer can be written down in the referral letter. |
| Is a skin biopsy really necessary to diagnose lupus? |
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Diagnosing lupus is really a puzzle. The more pieces the physician can collect, the sooner the diagnosis can be made. The typical characteristics do not provide certainty and the presence of a (high) ANF (ANA)-factor may be a characteristic of another disease. The indication of a skin biopsy depends on many factors and is not always necessary. The result of a skin biopsy is not always positive, even in a lupus patient. If the result is negative, no progress is made, but if the test is positive, the doctor can more easily diagnose lupus. The biopsy is done on healthy skin that is not exposed to sunlight, i.e. on the inner side of the arm. It is a minor intervention with a small risk factor that can make medications and heavy examinations unnecessary. The wound may heal more slowly in a patient with lupus, but there is not a great difference. A skin biopsy in a patient with scleroderma, however, bears more risks. A healthy looking skin may be sick, which interferes with the healing process. |
| How can you recognise a lupus flare? Read chapter First signs and complaints of our brochure on Lupus erythematosus |
| Read chapter 'First signs and complaints' of our brochure on Lupus erythematosus
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| What is a 'lupus-like syndrome'? |
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The term syndrome is used when a series of symptoms which are characteristic for a specific disease, occur together. A 'lupus-like' syndrome has symptoms of lupus, without the physician being able to make the diagnosis. |
| The level of my ANF (or ANA) factor is much too high for the moment. What should I do to regain the normal level? |
| ANF (or ANA) values do not always refer to the seriousness of the disease or flare. ANF (ANA) is useful, however, to diagnose lupus. Values that are important to determine the seriousness of the disease or flare are the anti-dsDNA antibodies (if they are present). These are antibodies against the double-stranded DNA. |
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