Educating Patients About "Late Effects" of Treatment

Tina Ryman, MSSenior Medical Writer

A recent article in the New York Times featured a cohort of AIDS survivors, now middle-aged, who are struggling with the so-called "late effects" of treatment. These long-term effects include kidney damage, diabetes, heart disease, thyroid disease, and arthritis─diseases more typically seen in people who are 10 to 20 years older. On one hand, these people are glad to be alive. But on the other, they're fearful about facing this unanticipated set of challenges. Late effects are physical and psychological
  Powerful treatments for life-threatening diseases can have similarly powerful long-term physical effects. Physical late effects of chemotherapy, for example, include cataracts, heart problems, infertility, liver problems, lung disease, osteoporosis, reduced lung capacity, and increased risk of other cancers. "Chemobrain" collectively refers to problems with memory, learning, and attention. Radiation therapy can cause dental problems, hypothyroidism, and intestinal problems.
Psychological late effects of treatment can be equally serious. While patients may initially celebrate surviving the disease and completing treatment, over time some begin to experience anxiety, depression, loneliness, and even guilt. Low self-esteem, poor body image, and loss of libido are also common. Some survivors have even been diagnosed with post-traumatic stress disorder. This makes sense considering the trauma of learning one has a life-threatening disease, the physical and mental suffering often caused by treatment, and the tendency of survivors to live in a state of hyper-vigilance to the threat of disease recurrence.

The need for patient education As more and more people are living longer with life-threatening illnesses, there is a growing need to educate patients about making the transition from patient to survivor. It's a subject that can be easily overlooked during treatment, when just getting through each day is challenge enough. Patient education can help expand the patient-healthcare provider dialogue to include questions such as:

  • What are the possible long-term effects of this treatment?
  • What symptoms should I watch for?
  • Which doctor should I see for my follow-up care?
  • What kind of medical information should I keep on file?
  • What follow-up tests will I need to have?
  • What other services may be useful after treatment?

Creating a follow-up care plan
  Patient education can also highlight the importance of creating a follow-up care plan. Follow-up care helps identify changes in the patient's health, as well as address any ongoing problems. It affords the patient and healthcare team the opportunity to monitor for any psychosocial effects that may arise after treatment. Follow-up care can also replace some of the valuable support patients received through regular contact with their healthcare team during treatment.
Individualized follow-up care plans take into account the specific disease and treatment. Patient education materials can include a follow-up action plan template for patients to customize with their healthcare provider. A good example is provided by the Minnesota Cancer Alliance. It can be downloaded at
Late effects and survivorship are important topics that can be addressed in both branded and unbranded formats. At Artcraft Health Education, we encourage our clients to provide this valuable education to patients. It can build stronger relationships for everyone involved. Find out what Artcraft can do for you.
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