by Phyllis Hanlon, Contributing Writer

Recent advances and clinical research have shown that better care for people with pulmonary arterial hypertension (PAH) can lead to longer lives. But recently the focus has shifted from treatment options that improve the functional aspects of the disease alone to including care that improves overall quality of life and the ability to perform day-to-day activities. A review published in the European Respiratory Review ( looked at the importance and benefits of patients becoming involved in their treatment and the challenges in achieving that goal.

Jytte Graarup, Pisana Ferrari and Luke S. Howard, co-authors of the review, pointed out that traditionally patients accepted treatment recommendations from their physician without being asked or expected to participate in their care. But studies and patient surveys and questionnaires have found that patients want to be more involved in their care. Moreover, active participation can lead to better outcomes, according to this review. The authors indicated that well-informed patients have an easier time coping with their disease. Also, if patients share in decision-making with healthcare professionals, they have a better understanding of their treatment and “take ownership of their disease.”

The authors note some challenges and barriers unique to the engagement of patients with PAH. For example, the emotional impact of PAH may make some people less willing to confront the disease and possible PAH-related cognitive function impairment can affect memory and decision making. Patients may also face obstacles in finding high-quality sources for information about their disease, and many have reported a disconnect between the specialized PAH care team and local health care providers.

Patient engagement is promoted through cooperation and communication among many individuals, including a health care team, psychologists, psychiatrists, social workers, patient experts and patient associations, according to the authors, who note that patients receiving multidisciplinary care in a collaborative environment can obtain optimal patient engagement. The article emphasizes the role of health care professional in providing information and utilizing tools such as quality of life assessments and questionnaires to encourage discussion about the needs that are not just physiological. Patients should be given adequate and timely information regarding treatment options and how PAH will affect them physically, personally and emotionally. Patients should have a clear understanding of how to manage their medications and what, if any, side effects might negatively affect daily life.  Health care professionals also need to receive appropriate training that helps them deliver information in the best way to promote patient engagement in care.

Based on patient needs, the authors suggested that bits of information be given at different times during the course of the disease. The authors noted that patients have reported “…a desire to receive information that is staggered throughout the course of their disease.” Newly diagnosed patients want information about the disease and treatments, while longer-term survivors want stories, testimonials, lifestyle information and support. The authors warned that incorrect information, particularly if obtained online, could be misleading and result in inappropriate actions by the patient. For example, the review cited the case of a woman who read misleading information on the Internet and then initially refused life-saving treatment. Following educational intervention measures and resources, the patient began treatment and became involved in her care, leading to improved function and additional engagement.

The way in which patients absorb information differs from one person to the next so the way in which it is delivered should be tailored to the individual. The authors pointed out that some patients prefer to read information, while others prefer to process the material after hearing it. Still others opt for “shared medical appointments” where a group of patients with the same disease meet with a team of health care professionals all at once. This model combines peer, social and emotional support with education.

The authors suggested a number of “practical solutions” to help patients become more involved in their care. “Information prescriptions” provide the patient with material on PAH and ways to manage the disease based on the patient’s needs, goals and stage of disease. A written care plan follows a similar format but emphasizes collaboration with the patient’s healthcare team. Patient “passports” are digital or hard copy records that serve as a central collection space for many aspects of the disease, including treatments, a written care plan, test results, self-care tips and a list of other resources. Advanced technology can also help track health data and keep the patient aware of progress, manage self-care and produce the most beneficial results.

Patient associations play an important role in supporting patient engagement as well. According to the authors, “…more than half of PAH patients and one-third of their carers feel socially isolated…” By joining a patient association, both patients and caregivers have access to networking, social support, advocacy, helplines, message boards and social media outlets.

Most importantly, the engaged patient can offer some important benefits to other patients. Those who learn to effectively manage their disease can share their knowledge and expertise as “expert patients,” inspiring and mentoring newly diagnosed patients.

The authors asserted that by taking a holistic approach, i.e., using several resources, methods and strategies, and encouraging shared decision-making the patient can take active charge of their health care and achieve a better outcome.


Authors of the review note active participation in care can lead to better outcomes for people with pulmonary arterial hypertension (PAH).

Patient engagement is promoted through the cooperation and communication of a team, however the review emphasizes the role of health care professionals.

Patient associations and “expert patients” can also play an important role.