Did you know that not only is April Parkinson’s Disease (PD) Awareness month, but April 11th is Parkinson’s Disease International Awareness Day? Parkinson’s affects 10 million people worldwide, with 90,000 people being diagnosed with the disease in the U.S. every year. Parkinson’s disease is a neurodegenerative disorder that develops slowly over time and most often in older years of life. Symptoms of PD can vary person to person, but can include both motor and non-motor symptoms such as tremor, balance difficulties, depression, anxiety, sleep difficulties, and cognitive impairments.
Parkinson’s and Healthcare
Because PD can impact a variety of bodily systems, it is a complex disease that often requires numerous specialty healthcare services to manage all symptoms. People with PD can face barriers to accessing the healthcare they need, such as:
- Transportation to appointments
- Communication with health care providers
- Low health literacy about their diagnosis, treatments, assistive devices and health promotion activities
- Lack of coordinated care between primary care providers and specialists
- Difficulty with physically attending and participating in healthcare appointments
Additionally, people with PD are admitted to the hospital more frequently than other patients and have longer hospital stays when admitted. Hospital environments present unique challenges for these patients due to the changes in routine compared to being at home, such as less opportunity for movement and medication schedules changing. This can result in symptoms of PD getting worse while in the hospital, or new medications impacting PD medications or causing new symptoms. People with PD are also at an increased risk of falls, which could cause further injury and lengthen a hospital stay.
Resources for Parkinson’s and Healthcare
The ADA requires that healthcare providers make reasonable modifications to policies, practices and procedures to ensure equal access to care for patients with disabilities, such as PD. Examples of potential modifications patients with PD can request include:
- Increased appointment time to ensure effective communication
- Note-takers at appointments to assist with recalling key information and care steps
- Use of facility wheelchairs, if available and needed, to assist with navigating healthcare offices safely
- Accessible medical equipment, such as height adjustable examination tables
The Parkinson’s Foundation has a Hospital Safety guide available to download and print on their website at no cost. This guide includes forms to track medications and assistive devices, summarize a patient’s PD symptoms for providers, and keep track of information specific to each patient and their care. This guide can assist with communication with healthcare providers about each patient’s unique needs as a first step to advocating for any needed modifications. More information about the guide and instructions to download it can be found at https://www.parkinson.org/resources-support/hospital-safety-guide.
Resources for Healthcare Providers
Healthcare providers can implement a variety of communication strategies to ensure patients with PD understand their diagnosis, treatment and care plan. Some examples of communication strategies include:
- Use plain language and avoid medical terminology and jargon, including in descriptions and instructions for medications (ex: “take this medication for lower back pain”).
- Encourage asking of questions by saying “What questions do you have for me?” instead of “Do you have any questions?”
- Speak with the patient with PD directly, instead of any caregivers, family or support persons. This will help build a trusting relationship with the patient and empower the patient in their healthcare.
- Listen intently and allow extra time for the patient to respond to questions.
- Check for understanding by asking patients to repeat key information in their own words, or to demonstrate skills discussed.
Primary Care providers should be aware of community resources to assist patients with barriers such as transportation to provide information when needed. If your healthcare system has a social work department, they can be a valuable resource for connecting patients to community services. Additionally, awareness of specialty practitioners within and outside of your healthcare system can facilitate not only the referral process for patients, but collaboration and communication among providers when needed.
The Parkinson’s Foundation also has numerous resources and information for healthcare professionals if you would like to learn more about PD and how you can support your patients with PD. This can be found on their website here: https://www.parkinson.org/resources-support/professionals/resources.
The resources and strategies discussed above can help to eliminate some, but not all, of the barriers faced by people with PD when accessing healthcare. Effective communication between patients and providers is a key first step towards building a trusting relationship and an effective care plan. Organizations like the Parkinson’s Foundation are a reliable resource for more information and continued learning for patients and providers alike.
References:
Zaman, M. S., Ghahari, S., & McColl, M. A. (2021). Barriers to accessing healthcare services for people with Parkinson’s Disease: A scoping review. Journal of Parkinson’s Disease, 11(4), 1537-1553. Doi: 10.3233/JPD-212735
Parkinson’s Foundation (2024). What is Parkinson’s? https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons
Credit: Blog courtesy of Advisory Committee Member Holly Darnell, MS OTR/L, ADAC (she/her/hers). Holly is the ADA Coordinator for the UCHealth Medical Group.