PROCEDURES | Using the Duodopa Pump

Living with young onset Parkinson’s means you often face a unique set of challenges when it comes to managing symptoms and maintaining an active lifestyle. While oral medications (pills) remain the cornerstone of Parkinson’s treatment, many people experience fluctuations in symptom control as the condition progresses. For some, the Duodopa pump offers an alternative to the on and off periods experienced with pills by delivering medication directly into the intestine where the medication is absorbed. In this article, we’ll explore what the Duodopa pump is, how it works, why you might consider it, and the potential side effects, helping you to make an informed decision about your treatment options.

What is the Duodopa Pump?

Duodopa is a gel form of carbidopa and levodopa designed to be delivered continuously into the small intestine via a portable pump. Instead of taking pills, which can take up to an hour to get to the right place to be absorbed and may cause ons-and-offs, Duodopa is given through a small pump that puts the medicine directly into the right spot in the small intestine where it is directly absorbed. This way, the medicine works more smoothly and steadily. To use Duodopa, doctors put a small tube into the stomach (a surgically implanted tube a percutaneous gastrojejunostomy, or PEGJ), which stays there and lets the medicine flow in (continuous infusion) all the time. This is really helpful for people who have trouble with their symptoms even when they take their pills regularly, with a full glass of water and avoiding protein either side of their dose.

Who is a good candidate?

• People with Parkinson’s who respond well to levodopa but have three or more hours of “off” time with motor fluctuations that cannot be controlled with another type of medication such as the dopamine agonists, COMT or MAO-B inhibitors.
• It is a good option for patients who are experiencing on/off fluctuations and are not candidates for deep brain stimulation surgery (DBS), for example, due to dementia, psychological concerns, or personal preference.
• Duodopa should not be given to patients who have abdominal conditions such as intestinal obstruction, disease of the stomach or abdominal walls, or serious bleeding disorders.

 How does the Duodopa Pump work?

1. Surgical Procedure: The first step in starting Duodopa therapy is the placement of a PEGJ tube. This minor surgical procedure creates a direct pathway from your stomach into your small intestine, ensuring that the medication reaches the right absorption site without having to travel through your entire system like a pill does.
2. Continuous Infusion:  The Duodopa pump is a portable infusion device that delivers a steady stream of the carbidopa/levodopa gel to your intestine over the course of the day. By maintaining consistent levels of medication right to the absorption site, the pump aims to reduce the peaks and troughs associated with standard pill taking, and smooths out your motor fluctuations.
3. Ease of Use: Duodopa comes in a plastic cassette that is attached to the infusion pump. This cassette does need to be refrigerated. Although it may seem daunting initially, the system is designed for home use once you’ve been properly trained by your care team. The pump allows you to adjust your dosing within prescribed limits, letting you tailor treatment to your daily challenges while under professional guidance.
4. Caring for the PEGJ site:  Very important to prevent infections and ensure the tube works properly. You’ll have to have proper hand hygiene, keep the site clean, check and flush the tube as necessary.

Why consider the Duodopa Pump?

For many with young onset Parkinson’s, striving to maintain an active and professional life is paramount. Here are a few reasons why the Duodopa pump could be an appropriate option:

1. Improved Symptom Control: The continuous infusion targets the shortfalls of traditional oral therapy. By reducing motor fluctuations and “off” periods, you may find a more consistent improvement in movement and overall functioning.
2. Enhanced Quality of Life: A smoother motor response can lead to better management of daily tasks, from professional responsibilities to social and familial engagements. Many people report feeling more stable and confident in their movements after switching to an infusion-based therapy.
3. Personalised Treatment: Since the pump allows for flexibility in dosing, your treatment can be more closely tailored to your unique needs, which is especially beneficial for those experiencing unpredictable fluctuations with oral medications.
4. Supporting symptom changes in Parkinson’s: As Parkinson’s progresses, oral medications sometimes seem less effective at controlling symptoms. Duodopa provides an alternative for those who have reached that stage and are looking for additional treatment options to maintain their quality of life.
5. It’s reversible: If you need to discontinue treatment or you and your doctor ever change your mind about Duodopa, the procedure can be reversed. This lets you keep your options open for the future.

Potential side effects and considerations

As with every treatment, the Duodopa pump comes with its own set of potential side effects and risks. It’s essential to discuss these with your neurologist to determine if the benefits outweigh the risks for your specific circumstances:

• Surgical and Procedure-Related Risks: The insertion of a PEGJ tube carries risks such as infection, bleeding, or complications related to the surgical procedure. Although these risks are generally low, they are an important consideration.
• Device or System Malfunctions: As a sophisticated piece of medical technology, the pump itself can occasionally malfunction. It is important to have contingency plans and training on how to manage any technical difficulties. The cassette also needs to be refrigerated.
• Gastrointestinal Issues: Some patients may experience abdominal discomfort, nausea, or other gastrointestinal side effects related to the continuous infusion of the gel.
• Skin Irritation and Tube-Related Problems: The entry site of the tube requires regular care. There may be issues related to skin irritation or local infections if the site is not maintained properly.
• Adjustment Period: Adapting to the pump system may take time. During the initial period, you might experience variability in symptom control as your body adjusts, and you may need ongoing adjustments to the dosing schedule.

Caring for the PEGJ (percutaneous gastrojejunostomy) site

Caring for the PEGJ (percutaneous gastrojejunostomy) site is important to prevent infections and ensure the tube works properly.

1. Hand Hygiene: Always wash your hands with soap and water before touching the tube or the skin around it.
2. Cleaning the Site: Use mild soap and warm water to clean the skin around the tube daily. Gently clean under the bumper (the piece that holds the tube in place) and the tube itself. Dry the area thoroughly with a clean towel or gauze.
3. Checking the Tube: Inspect the tube daily for any signs of redness, swelling, or discharge around the site1. Ensure the bumper is snug but not too tight against the skin1.
4. Flushing the Tube: Flush the tube with water before and after each use to prevent blockages. Use a syringe with at least 30 millilitres of water.
5. Handling Blockages: If the tube becomes clogged, try flushing it with warm water using a syringe. Do not use a wire to unclog it, as this can damage the tube.
6. General Care: Avoid letting the end of the tube touch anything to keep it clean. Follow any additional instructions provided by your healthcare provider.

Making the decision: is Duodopa right for you?

Deciding whether to switch to a Duodopa pump requires careful consideration and detailed discussions with your care team. You should consider:

• Your Current Symptom Control: If you’re experiencing significant motor fluctuations or “off” periods that limit your ability to carry on with everyday activities, the Duodopa pump might offer a more stable therapeutic option. Be sure to discuss all procedures and medical options for symptom control with your neurologist (e.g. DBS, VYALEV pump, other classes of medication that can extend the effects of levodopa).
• Your Lifestyle and Personal Goals: For many living with young onset Parkinson’s, maintaining independence and the ability to pursue professional or personal interests is key. Assessing how the pump could fit into your lifestyle is crucial.
• Support and Care Arrangements: Since the system requires active management and regular maintenance, having reliable support, either from family, carers, or a dedicated healthcare team, is important in successfully incorporating the pump into your daily life. Abbvie also has a patient assistance program for extra help and advice with the use of the pump.
• Long-term Treatment Goals: As Parkinson’s is a progressive condition, your treatment strategy needs to be dynamic. If you’re looking for a step forward in managing advanced symptoms, investing in a Duodopa pump could be a beneficial option.

The Duodopa pump represents an innovative, advanced treatment option for people with young onset Parkinson’s who are struggling with the fluctuations and limitations of oral medications. It offers a promise of more consistent symptom control and enhanced quality of life by delivering continuous medication directly into the small intestine. However, like any treatment, it is not without its risks. By weighing the potential benefits against the side effects and procedural risks, and by carefully discussing these factors with your healthcare team, you can make an informed decision that aligns with your lifestyle and treatment goals.

If you’re considering the Duodopa pump, ensure you ask plenty of questions and access all available support services. Your neurologist, Parkinson’s Nurse Specialist, and allied health team are there to help guide you through every step of your decision-making process. Ultimately, the goal is to find a treatment strategy that not only manages your symptoms but also supports your aspirations and everyday life.

This is intended to serve as a reliable resource for those exploring different treatment options for Parkinson’s. However, it is general information only. Always consult with your care team for personalised advice tailored to your unique situation.

 

References

Thakkar, S., Fung, V. S. C., Merola, A., Rollins, M., Soileau, M. J., & Kovács, N. (2021). 24-Hour Levodopa-Carbidopa Intestinal Gel: Clinical Experience and Practical Recommendations. CNS Drugs, 35, 137–149.

Henriksen, T., Katzenschlager, R., Bhidayasiri, R., Staines, H., Lockhart, D., & Lees, A. (2023). Practical use of apomorphine infusion in Parkinson’s disease: Lessons from the TOLEDO study and clinical experience. Journal of Neural Transmission, 130, 1475–1484.

Martinez-Martin, P., Rizos, A., Wetmore, J. B., Odin, P., Antonini, A., & Chaudhuri, K. R. (2016). Quality of life in Parkinson’s disease improved by apomorphine pump: The OPTIPUMP cohort study. Journal of Neurology, 263(11), 2199–2208.

Resources

NPS MedicineWise. (n.d.). Duodopa intestinal gel – Consumer Medicine Information (CMI). Retrieved from https://www.nps.org.au/medicine-finder/duodopa-intestinal-gel

MedsInfo. (n.d.). Duodopa Guide for Patients. Retrieved from https://medsinfo.com.au/api/documents/Duodopa_Patient_Guide_Leaflet_PL?format=pdf

NPS MedicineWise. (n.d.). Duodopa CMI Summary. Retrieved from https://www.nps.org.au/assets/medicines/a11bbc6b-92cc-4dea-bdb3-a53300ff18ec-reduced.pdf