The Role of the Patient In the Management of Rheumatic Disease

Role of a patient

Patient centered care is the hallmark of quality health care. This approach encourages respectful and responsive collaboration between health care professionals and patients and takes into consideration patients’ preferences, needs and values. Patients play an integral role in the management of their rheumatic condition and are key in helping the health care provider make an accurate diagnosis and co-creating an optimal treatment plan.

As a patient, you have some basic rights that inform all aspects of your care and interactions with health care providers. These rights include:

  • To be treated with dignity and respect and feel confident that your preferences, values and needs have been heard
  • To receive information about the arthritis diagnosis through up-to-date and easy-to-read educational materials and programs
  • To receive a full explanation of the risks and benefits of treatments and services being offered and give informed consent prior to starting any treatment
  • To be informed about health and wellness services available in the local community to support individuals with arthritis and associated chronic diseases

As a patient, you too have a number of responsibilities to ensure the care received is appropriate and has the greatest chance of being effective

Patient’s Responsibilities as an Integral Part of the Care Team

Education

  • Become knowledgeable about your rheumatic illness and treatment options. Ask your care providers for information about your condition or additional community resources that can assist you in learning more
  • Know all your medications, what they are for, the dosage, and how to take them appropriately
  • Know your care team and assist them in communicating with each other by sharing their contact information and providing the appropriate forms to allow timely communication between providers
  • Read all medical and patient information forms before signing them, and if you don’t understand what the forms are for, please ask your care provider or the support staff
  • Join a trusted organization that focuses on your illness to stay current on medical information as well as other care information that promotes disease self – management, such as support groups

Communication/Shared Decision Making

  • Ask questions and write information in a safe place so that you can easily refer back to it. Get clarification from the care provider when you don’t understand
  • Document your medical history and track changes in your symptoms and illness presentation to share with your providers in a timely way
  • Communicate clearly with your healthcare team which may include a family doctor, rheumatologist, physician assistant, nurse practitioner, physical therapist, occupational therapist, pharmacist and other professionals involved in arthritis care
  • Actively participate in decisions about your care. It is important to understand the risks and benefits associated with different medications or treatment approaches
  • Work with your providers to create a care plan together. Ensure they understand your family and home situation so that it is considered in the plan
  • Invest in the relationship with the team, be honest and open about your symptoms and level of adherence to recommended treatment to make sure you get the right diagnosis and treatment
  • Be respectful even when you are upset and scared

Advocacy

  • Speak up and ask questions about your care and treatment plan. Know your options
  • Know your rights as a patient
  • Invite a family member or friend to be a part of your care experience to assist in advocating for your care needs especially at times when you are not feeling well

Self-Care

  • Maintain a healthy lifestyle that includes regular physical activity (as appropriate), a proper diet and nutrition, and adequate rest
  • Avoid unhealthy behaviors that can worsen disease symptoms and make treatments less effective such as smoking, excessive alcohol use or drug abuse
  • Fill all prescriptions in a timely way
  • Follow mutually agreed upon treatment plans and update health care providers of any changes in your symptoms or treatment side effects

Where Does the Patient Access Treatment Services?

Most medical and rehabilitation care for patient with rheumatic conditions can be provided through private, clinic or outpatient based services. Admission to a hospital for initial diagnosis, testing and management of acute disease may be needed in some cases. Surgery such as a partial or total joint replacement also requires a short hospital stay and in some cases, admission to an inpatient facility for further rehabilitation care.

Summary

Ultimately the patient is responsible for his or her own health. However, a good patient-provider partnership is essential for effective health outcomes. A collaborative care process not only enhances the care plan and improves treatment outcomes but also can increase patient safety. This type of patient engagement can often lead to more tailored health care interventions and allow patients to be actively involved in the decision-making process around what works best for their health. Overall, patients need to learn as much as possible about their rheumatic condition, appropriate treatment options, strategies to maintain mobility and day-to-day activity, and diet and rest requirements needed to maintain energy and participate in valued community, leisure and work activities. Working together with health professionals, the engaged patient becomes empowered to meet the challenges of their illness with knowledge, confidence and energy.

This information is provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnoses and treatment of a medical or health condition.