Digital Therapeutics in PAH: Augmenting care journeys for patients with rare, complex chronic disease

Introduction

PAH is a rare, progressive, and complex chronic disease where increased pressure in the blood vessels of the lungs results in stress on the heart. As of today, one in three people die within five years of diagnosis, from the disease. For patients suffering from the disease, the average annual cost per patient is estimated to be around €100,000 which is staggering.

Despite advances in the pharmacological space with combination drug therapy, PAH continues to be a debilitating disease with higher mortality and morbidity, with delays in the correct diagnosis – leading to improper disease management, disease progression, treatment failure, increased mortality, and worsened well-being among patients.

Given the unmet needs, it becomes important that pharmaceutical organizations amalgamate traditional medicine with technology to achieve enhanced outcomes. 

This is where a digital therapeutics can play a role.

Digital therapeutics provide the opportunity to holistically improve the quality of care and clinical outcomes for PAH patients while achieving important business objectives for the companion Rx.

Voice of the Patient

In a research study released in the European Respiratory Review, which included responses from 326 PAH patients:

PAH Patient Journey Gaps

Physical Exercise:

In a disease like PAH, dyspnea is a very common symptom, which restricts physical activity and impacts the overall quality of life (QOL) of a patient.  As the disease impacts the mobility of the patient, it becomes difficult for the patient to go to the hospital for consultations, or for updates on parameters. Treatment, usually in vasoactive medication, is conferred along with 6-minute walk distance (6MWD). Physical activity confers multiple benefits relevant to PAH pathophysiology including improvements in endothelial function, energy metabolism, and right ventricular (RV) function, exceeding the effect of medication.

Adherence:

The overall adherence observed in patients with PAH is between 60-65%. There are a number of factors that come into play that have been seen to impact the rate of adherence in PAH patients. Some include:

• Patients’ perception of adverse side-effects that comes along with pharmacological therapy
• Due to the delay in diagnosis, and previous experience with therapies, the patient might show reduced motivation in the new therapy

Emotional and social well-being:

High levels of anxiety and depression have been reported in patients with PAH. Patients often inform about feelings of frustration, anger, and low-self esteem. Lack of sleep is also commonly reported among patients.

Need for information:

In a research study released in the European Respiratory Review, which included responses from 326 PAH patients:

• 67% of the patients reported a need for more information in regard to treatment options.
• 61% of the patients need more information on the disease itself
• 36% of the patients report a need for information about depression, anxiety, risk, and other emotional consequences

It is thus apparent that non-pharmacological factors do play a significant role in the overall impact on the well-being and quality of life of the patients.

A Digital Therapeutics in PAH: How’ll it help?