The patient's point of view is a very crucial issue in regard to patients who suffer from IBD. The majority of newly diagnosed cases are between 18 and 35 years of age and, considering the peculiar characteristics of the disease, it is fundamental that any doctors involved in the management of the patient establish, maintain and improve on a long-term doctor-patient relationship.
The diagnosis of IBD has a profound impact on the lives of patients, so any physician notifying the patient should be aware of this impact, be able to handle a variety of reactions of the patient, and be sure to leave the patient with a sense that they are not going to have to go through the challenges of IBD alone .
The characteristics of the disease must be explained as well as the medical options and even the chance of possible surgery. A recent UK study outlined the key issues that concern IBD patients:
- Fear of incontinence when using public transport, shopping, vacationing and when at work.
- Fear of hospitals and treatment.
- Fear of cancer.
- Effects on employment including limitations in regards to types of jobs and promotion prospects
- Effects on holiday medical and life insurance.
- Guilt because of the effects of the above problems on the family.
- Anxiety and sense of isolation.
Regarding these considerations, the multidiscipli-narity organisation of the management program should be made clear to the patient. Previously healthy young patients who seldom saw a physician find themselves in a situation where they are surrounded by many doctors and, therefore, they absolutely need a primary care figure who can mediate with others, discuss and explain any proposal offered by different specialists and coordinate the work of the entire group.
IBD group support services are very helpful for patients with severe disease in providing practical information, sharing concerns and personal fears and acquiring, step by step, the balance necessary to enjoy a good life in spite of IBD.
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