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While most patients were interested in an online wellness program for managing their psoriatic arthritis, barriers, such as cost and fatigue, hindered their initiation of lifestyle adaptations.
In an interview with HCPLive Rheumatology, Shilpa Venkatachalam, PhD, MPH, Director, Patient Centered Research Operations and Ethical Oversight, co-principal investigator of ArthritisPower, CreakyJoints, discussed her recent study, “Managing Psoriatic Arthritis: Patients’ Views and Attitudes to Using an Online Wellness Program.” The data, presented at European Congress of Rheumatology (EULAR) 2023, evaluated the interest of patients with psoriatic arthritis (PsA) to enroll in an online wellness program.
Results indicated that although more than 90% of respondents reported being “somewhat likely” or “very likely” to regularly engage with an online coach or dedicate 1 to 2 hours per week learning about nutrition, exercise, sleep, and stress management if given the opportunity, only 8.7% of participants were currently enrolled in a structured wellness program. Common barriers to initiating wellness changes were costs and not having the energy to make changes.
What initially inspired your team to assess treatment optimization psoriatic arthritis by using self-reported information from this patient population?
People living with psoriatic arthritis (PsA) regularly confront decisions about how to optimize treatment of their chronic disease. While their interactions with their physicians and health care team impact their disease outcomes through the prescribing of medications and other complementary therapies, we also know that lifestyle modifications, such as nutrition, exercise, sleep, and stress management can positively affect disease outcomes.
In addition, we know that many patients are very interested in understanding additional treatment modalities to manage their overall health and disease. We want to provide patients with reliable and evidence-based information that they can use for self-management as well as for making more informed medical decisions alongside their clinicians.
In your opinion, why do you believe patient-reported outcomes (PROs) are an essential part of disease management?
At CreakyJoints and the Global Healthy Living Foundation (GHLF), we always encourage people living with chronic disease to put themselves at the center of their care by engaging in shared decision-making with their physicians regarding how they progress towards their disease management goals. Patient-reported outcomes are a huge part of this endeavor – they are validated and standardized measures to communicate information directly from the patient who lives with the disease to their health care team.
In addition, in diseases like psoriatic arthritis, some of the data that comes from patients through PROs cannot be garnered through blood work or imaging; we don’t really see pain or fatigue in blood work. But we know that these are bothersome symptoms and important to resolve for patients. One way we can get this information is via PROs and when combined with clinical data, it can provide really useful information to the care team.
PROs allow for people living with a disease to get into the habit of tracking symptoms that matter to them; it puts what matters to those living with a disease at top and center particularly if they are using something like our ArthritisPower Research Registry application, which can show (for example) how symptoms ebb and flow over time.
It also allows patients to be invested in their own care and treatment management alongside their clinician too. Integrating PRO collection into disease management provides a richer understanding of the day-to-day patient experience of disease, while relying less on recall and subjective assessment at periodic doctors’ appointments.
The value of PROs cannot be discounted especially as we think of patient-centered and patient evidence-based care. In fact, given the importance of this topic, we recently released a podcast interview as part of a podcast called “Relatable Rheumatology” on the value of PROs that we conducted with Dr Susan Goodman of the Hospital of Special Surgery and a patient partner Shelley Fritz where we talked about the value of PROs for patients and for clinicians.
Did the results of the study surprise you?
In our study, “Managing Psoriatic Arthritis: Patients’ Views and Attitudes to Using an Online Wellness Program,” and in collaboration with clinicians Elaine Husni, MD, MPH, and Len Calabrese, DO, rheumatologists and researchers from the Cleveland Clinic, and patients, the GHLF conducted an online survey.
The questions in the survey were designed to gather information about participants' previous experiences with online wellness programs, their motivations for participating, and their interest in an online program.
We were not surprised by the results of the study, but we were a little disheartened that so few participated or had access to a wellness program. About a third of patients expressed a preference for a wellness program that included direct online interaction with a trained professional (34.0%), followed by attending an online course (16.4%) and reading written material (16.0%).
We know through increasing research on this topic that successful treatment of any chronic disease, including psoriatic arthritis, requires a holistic approach that goes beyond diagnosis and taking medication. This study tells us that while PsA patients are willing to add wellness education and lifestyle adaptations to their disease management strategy, those programs need to be both accessible and affordable to optimize participation.
Does your team plan on doing any further research on e-coaching wellness platforms for the improvement and management of lifestyle changes in this patient population?
At the Global Healthy Living Foundation, our commitment is always to provide patients with resources and evidence-based information for the optimal management of their disease. We have several resources that can help patients interested in wellness including Psoriatic Arthritis Wellness: A Newsletter Series to Help You Feel Better with PsA and Psoriatic Arthritis Wellness Center, created in collaboration with United Rheumatology. Our goal at GHLF is to help patients live better. We know that wellness programs can be costly and are often not covered by insurance. We are constantly working to make resources that include wellness available to our patient community so they can live better.