Fabry disease is a complex genetic disease that affects the workings of various organs. Its symptoms can vary widely, and include chronic pain in hands and feet, hearing and eyesight problems, and life-threatening ills such as cardiac and kidney disease, and stroke.

Patients may need multiple treatments to manage these differing symptoms. For this reason, a healthcare provider may develop a treatment plan for each patient, a detailed treatment strategy tailored to an individual’s needs.

Purpose of a treatment plan

The purpose of a treatment plan is to:

  • Guide the patient in achieving goals that help to improve their health and quality of life.
  • Help other medical specialists, such as those dealing with cardiac or kidney problems, to understand a patient’s treatment and to make any required changes.
  • Put the various treatments a person is using in a clear, detailed and organized format, one that includes medication names, dates/times of use, potential side effects, and measurable goals so to track progress.

Treatment plan contents

The treatment plan usually includes:

  • The patient’s personal information and medical history.
  • Results of diagnostic tests.
  • Treatment goals and measurable objectives. This section will list a patient’s medical issues linked to the disease. It will also list medications being used, potential or experienced side effects, and suggested lifestyle changes, such as diet and exercise. It will lay out short-term and long-term goals for therapies. For example, if kidney and heart problems have been diagnosed, then medications given for each will be listed, usually along with a timeframe in which these conditions could be expected to ease or resolve.
  • Expected length of treatment and costs. Current medications for Fabry disease need to be used throughout a patient’s life, so they can be costly and financial planning may be necessary. Patients may also require symptomatic medications for related conditions, like heart and kidney problems. This section should offer information about the likely total cost of disease treatment.
  • What’s next? A section should also offer information about upcoming doctor’s visits concerning needed check-ups, evaluations of response to medicines, and  follow-up tests.
  • Giving  consent. Both the medical practitioner and the patient have to sign the treatment plan after carefully reading through it, essentially acknowledging the information there and consenting to it. But a treatment plan is not an official document, it’s a personalized medical plan for a patient. The signature, or consent, is an acknowledgment that  the patient or family member understand the plan and are in overall agreement with it.

 

Last updated: Oct. 09, 2019

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Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.