ABSTRACT
Pulmonary arterial hypertension (PAH) is a chronic and progressive disease with substantial physiological and psychosocial burden. Effective patient education is essential for self‐management and improved outcomes, yet access to reliable information remains limited by brief clinic visits and variable‐quality external resources. Although video‐assisted learning has been used in other chronic diseases, patient perceptions of video education in PAH have not been studied. To address this gap, we developed the SMART‐PAH Library, a web‐based learning management platform featuring 12 concise, expert‐developed videos on key aspects of PAH management. This qualitative pilot explored patient perceptions, feasibility, and perceived impact of the SMART‐PAH library. After completing the SMART‐PAH course, 13 PAH patients participated in semi‐structured virtual interviews exploring user experience, unmet educational needs, and the impact of the content on knowledge and self‐management. Transcripts were analyzed iteratively by multiple reviewers using an inductive grounded theory‐informed approach until thematic saturation was reached. Transcript analysis identified four domains in which patients sought support from a PAH‐focused educational platform: emotional, physical, educational, and structural. Patients valued credible, relatable content, practical disease‐management guidance, and education on under‐addressed topics such as sexual health and palliative care. The platform helped address barriers including limited specialist access, financial complexity, and provider trust through accessible, repeatable reinforcement of clinical guidance. The SMART‐PAH video library was perceived as a feasible and impactful approach to PAH education. Video‐assisted learning can complement traditional PAH care by addressing informational gaps and supporting self‐management. Larger studies are needed to evaluate effects on mental health, patient knowledge, and outcomes.
Keywords: digital health interventions, health care disparities, health services research, health‐related quality of life, patient activation
Abbreviations
- 6MWT
6‐min walk test
- CAD
Coronary artery disease
- CKD
Chronic kidney disease
- COPD
Chronic obstructive pulmonary disease
- CVA/TIA
Cerebrovascular accident/transient ischemic attack
- ED
Emergency department
- ERA
Endothelin receptor antagonist
- ERS
European Respiratory Society
- ESC
European Society of Cardiology
- HTN
Hypertension
- IPAH
Idiopathic pulmonary arterial hypertension
- IV
Intravenous
- NT‐proBNP
N‐terminal pro–B‐type natriuretic peptide
- NYHA
New York Heart Association
- PAD
Peripheral artery disease
- PAH
Pulmonary arterial hypertension
- PDE5i
Phosphodiesterase‐5 inhibitor
- PH
Pulmonary hypertension
- PHA
Pulmonary Hypertension Association
- PVOD
Pulmonary veno‐occlusive disease
- PVR
Pulmonary vascular resistance
- REVEAL
Registry to Evaluate Early and Long‐term PAH Disease Management
- T2DM
Type 2 diabetes mellitus
- WHO
World Health Organization
Pulmonary arterial hypertension (PAH) is a chronic, progressive disease characterized by elevated pulmonary vascular resistance, right‐sided heart failure, and premature mortality [1]. Patient‐centered management requires alignment between care providers' priorities and patient goals. Poor health‐related quality of life results from the disease itself and treatment burden [2]. Despite advances in the modern therapeutic era, PAH continues to impose substantial physical, emotional, and psychosocial burdens on patients. Individuals commonly experience dyspnea, fatigue, and exercise intolerance alongside anxiety, depression, and heightened stress [3, 4]. These symptoms can disrupt employment, strain interpersonal relationships, and limit daily activities, contributing to markedly reduced quality of life [5, 6].
The 6th and 7th World Symposia on Pulmonary Hypertension emphasized patient‐centered care and understanding how patients feel and function [7, 8]. In the most recent global patient survey comprising more than 3,300 PAH patients across 88 countries, the “invisible” nature of PH remained a persistent theme affecting socialization, relationships, and employment [9].
Patient education is central to chronic disease management, particularly in PAH, where treatment and monitoring are complex. Self‐management programs in other chronic diseases improve quality of life, psychological well‐being, self‐efficacy, and disease acceptance [10, 11, 12]. Similar needs exist in PAH, where patients often rely heavily on clinicians for information but continue to report significant gaps in understanding. Although many PAH patients report satisfaction with education from healthcare professionals, nearly half still desire additional information, and greater satisfaction with education has been associated with improved coping [13]. Many patients also struggle to explain PAH to others, contributing to insecurity and isolation [14].
Informational gaps in PAH stem from limited access to PAH specialists, poor readability of existing educational materials, and time constraints during clinical visits [15, 16, 17]. Sensitive topics such as palliative care, advance care planning, and sexual health are often insufficiently addressed, underscoring the need for accessible, patient‐centered education beyond the clinical encounter.
Video‐based learning has improved knowledge, anxiety, decision‐making, adherence, and quality of life across several chronic diseases, including diabetes, heart failure, and obstructive lung disease [18, 19, 20]. However, its use in PAH has not been studied.
To address this gap, we developed the SysteMatic leARning with Technology in Pulmonary Arterial Hypertension (SMART‐PAH) Library, a web‐based platform containing 12 expert‐developed educational videos on PAH management and daily living. This qualitative pilot study evaluated patient perceptions of its feasibility, acceptability, and perceived impact on disease understanding and self‐management.
1. Methods
1.1. Study Design
A single‐center pilot feasibility study was conducted at Cleveland Clinic's Pulmonary Vascular Disease Program between November 2022 and November 2024. Qualitative interviews were conducted to evaluate patient perceptions of SMART‐PAH, a web‐based video educational intervention for PAH. The study was approved by the Cleveland Clinic Institutional Review Board (Protocol # 22752), and all participants provided informed consent. Reporting followed the Consolidated Criteria for Reporting Qualitative Research checklist [21].
1.2. Participant Recruitment
Adults ≥ 18 years old with World Symposium on Pulmonary Hypertension Group 1 PAH confirmed by right heart catheterization were recruited from a tertiary pulmonary hypertension center between November 2022 and November 2024. Eligibility required English proficiency, internet access, and the ability to participate in a virtual interview. Patients were identified during pulmonary hypertension team meetings and recruited from routine clinical visits. Figure 1 presents the flow of participants through recruitment and retention. Patients provided consent for both the educational course and the recorded interview, then received secure online access to the course through unique login credentials.
Figure 1.
2010 Consort flow diagram.
1.3. Intervention
Twelve specialist‐developed educational videos ranging from 6 to 20 min were created by the pulmonary hypertension center and the patient champion. Participants received a $50 stipend for course completion and an additional $50 for participation in an optional qualitative interview. Video topics were based on patient‐identified needs and Pulmonary Hypertension Association online resources, including Living with Pulmonary Hypertension, a published patient‐developed book for individuals with PAH. Topics included disease definition, diagnostics, diet, treatment options, emergencies, over‐the‐counter medications, and financial topics [Table 1].
Table 1.
Video titles and learning objectives.
| Video | Title | Objectives |
|---|---|---|
| 1 | What is pulmonary arterial hypertension |
|
| 2 | Diagnostics and testing in pulmonary hypertension |
|
| 3 | Diet, salt and PAH |
|
| 4 | Therapies and PAH |
|
| 5 | Dealing with emergencies, over the counter medications |
|
| 6 | Sex, intimacy and pregnancy PAH |
|
| 7 | Coping and PAH (depression, anxiety and mindfulness) |
|
| 8 | Travel and living with PAH |
|
| 9 | Exercise and PAH |
|
| 10 | Palliative care and PAH |
|
| 11 | Advance care planning |
|
| 12 | Insurance and disability |
|
Abbreviations: PAH, pulmonary arterial hypertension; PH, pulmonary hypertension.
1.4. Qualitative Data Collection and Analysis
After completing the video library, participants were invited to a semi‐structured approximately 30‐min virtual interview focused on the SMART‐PAH course and its ability to address educational needs. Interviews were conducted via video conferencing by two study team members, including a male qualitative research expert (L.J.H.) and a female PAH patient champion (L.D.), neither of whom had prior relationships with participants. The interview guide was developed by study personnel, including the patient champion [Supplementary Appendix 1]. All interviews were recorded and professionally transcribed.
Analysis used a grounded theory‐informed, generalized inductive approach. Three investigators (D.G.S., P.P., and L.D.) received qualitative analysis training from the study qualitative expert (L.J.H.). Initial transcripts were independently reviewed and coded by D.G.S., L.D., and L.J.H. to identify preliminary themes. Investigators met iteratively to reconcile themes and refine the codebook until consensus was reached under guidance of the qualitative expert (L.J.H.). Representative quotes were identified for each theme. Analysis occurred concurrently with interviews, allowing modification of the interview guide as new themes and sub‐themes emerged. A concept map was created that represents the patient experience domains shaped by video‐based patient education in Figure 2. Although all participants were pre‐specified for interview, thematic saturation was reached after 10 interviews, with no new themes emerging in interviews 11–13. Data analysis was performed using the R‐based Qualitative Data Analysis package in R [22].
Figure 2.
Concept Map of Patients' lived experience of PAH that the SMART‐PAH course addressed.
2. Results
2.1. Participant Characteristics
Baseline characteristics of patients are summarized in Table 2 and are broadly consistent with previously described PAH cohorts [23]. Of the 18 individuals enrolled in the study, 13 completed the course, all of whom were eligible for and participated in the semi‐structured interviews. The 13 participants' ranged from 44 to 66 years old and were predominantly White women. Among World Symposium on Pulmonary Hypertension Group 1 subtypes, 44% had idiopathic PAH and 27% connective tissue disease‐associated PAH. Disease severity ranged from World Health Organization/New York Heart Association functional class I to IV, with half in functional class II. Participants received diverse PAH therapies, including dual and triple oral regimens, inhaled therapies, and parenteral treatments. Comorbidities included hypertension, diabetes, chronic kidney disease, and thyroid disease. The five non‐completers did not differ meaningfully from completers in age, sex, or PAH subtype. A higher proportion of non‐completers had a new incident PAH diagnosis (3/5, 60% vs. 5/13, 38%), defined as less than 1 year of diagnosis at our center. Baseline demographic data was unavailable for two non‐completers.
Table 2.
Baseline characteristics.
| Characteristics | Total N = 18 (enrolled) median (Q1, Q3); n (%) missing data (3) |
|---|---|
| Demographics | |
| Age (years) | 59 (40, 66) |
| Self‐reported race | |
| Black or African American | 1 (6.7%) |
| White | 14 (93.3%) |
| Self‐reported ethnicity | |
| Not Hispanic or Latino | 15 (100.0%) |
| Self‐reported gender identity | |
| Female | 10 (66.7%) |
| Male | 5 (33.3%) |
| Marital status | |
| Divorced | 3 (20.0%) |
| Married | 7 (46.7%) |
| Never been married | 3 (20.0%) |
| Separated | 1 (6.7%) |
| Widowed | 1 (6.7%) |
| Household status | |
| Lives alone | 5 (33.3%) |
| Lives with family (spouse/partner, children, parents) | 9 (60.0%) |
| Lives with others (roommates) | 1 (6.7%) |
| Highest education level | |
| Advanced degree | 3 (20.0%) |
| Associate degree | 2 (13.3%) |
| Bachelor's degree | 7 (46.7%) |
| High school graduate | 2 (13.3%) |
| Some college, no degree | 1 (6.7%) |
| Primary language | |
| English | 15 (100.0%) |
| Current work status | |
| Employed full‐time | 6 (40.0%) |
| Employed part‐time | 1 (6.7%) |
| Not working, not seeking work, disabled | 1 (6.7%) |
| Not working, not seeking work, not disabled | 1 (6.7%) |
| Not working, seeking work, not disabled | 2 (13.3%) |
| Retired | 4 (26.7%) |
| Annual household income (USD) | |
| $30,000–$39,999 | 1 (6.7%) |
| $50,000–$99,999 | 5 (33.3%) |
| > $100,000 | 6 (40.0%) |
| Unknown or refused | 3 (20.0%) |
| PAH specific | |
| WHO Group 1 diagnosis | |
| Congenital heart disease‐PAH | 1 (5.6%) |
| CTD PAH | 5 (27.8%) |
| Toxin induced‐PAH | 1 (5.6%) |
| Familial PAH | 2 (11.1%) |
| IPAH | 8 (44.4%) |
| PVOD | 1 (5.6%) |
| Oral therapies | |
| Oral‐ERA | 13 (72.2%) |
| Oral‐PDE5i | 16 (88.9%) |
| Oral‐prostacyclin | 7 (38.9%) |
| Oral‐ soluble guanylate cyclase stimulator | 1 (5.6%) |
| Routes of therapy | |
| Monotherapy‐oral | 1 (5.6%) |
| Dual‐oral | 5 (27.8%) |
| Triple‐oral | 2 (11.1%) |
| Oral + IV | 4 (22.2%) |
| Oral + inhaled | 2 (11.1%) |
| Oral + subcutaneous | 4 (22.2%) |
| PAH status | |
| Incident | 8 (44.4%) |
| Prevalent | 10 (55.6%) |
| Oxygen requirements | |
| Supplemental oxygen (Yes) | 8 (44.4%) |
| Supplemental oxygen (No) | 10 (55.6%) |
| Nocturnal oxygen only | 2 (11.1%) |
| Exertional oxygen only | 3 (16.6%) |
| Nocturnal and Exertional oxygen | 3 (16.6%) |
| Continuous oxygen | 1 (5.6%) |
| WHO/NYHA functional class | |
| 1 | 2 (11.1%) |
| 2 | 9 (50.0%) |
| 3 | 6 (33.3%) |
| 4 | 1 (5.6%) |
| REVEAL Lite 2 risk | 5.00 (4.00, 9.00) |
| High | 5 (27.8%) |
| Intermediate | 1 (5.6%) |
| Low | 12 (66.7%) |
| Hospitalized last 6 months | 7 (38.9%) |
| French low‐risk profile | |
| 0 | 4 (22.2%) |
| 1 | 3 (16.7%) |
| 2 | 8 (44.4%) |
| 3 | 3 (16.7%) |
| ESC ERS 4‐strata risk numeric | |
| High | 1 (5.6%) |
| Intermediate‐high | 4 (22.2%) |
| Intermediate‐low | 6 (33.3%) |
| Low | 7 (38.9%) |
| 6MWT distance (m) | 425 (323, 498) |
| NT‐proBNP (pg/mL) | 289 (140, 1,512) |
| Pericardial effusion present | 3 (16.7%) |
| PVR (WU) | |
| < 5 | 6 (33.3%) |
| > 5 | 12 (66.7%) |
| Comorbidities | |
| #Cardiac comorbidities (CAD, PAD, CVA/TIA, HTN, Arrhythmias) | |
| 0 | 4 (22.2%) |
| 1 | 8 (44.4%) |
| 2 | 5 (27.8%) |
| 3 | 1 (5.6%) |
| T2DM | 4 (22.2%) |
| Hypothyroidism | 3 (16.7%) |
| Hyperthyroid | 0 (0.0%) |
| History of cancer | 0 (0.0%) |
| Liver disease | 0 (0.0%) |
| CKD | 4 (22.2%) |
| Smoking history | |
| No | 8 (44.4%) |
| Yes, current | 1 (5.6%) |
| Yes, former | 9 (50.0%) |
| Reactive airway disease | 1 (5.6%) |
| COPD | 1 (5.6%) |
| Mental health | |
| Depression | |
| No | 9 (50.0%) |
| Yes, not on medication | 1 (5.6%) |
| Yes, on medication | 8 (44.4%) |
| Anxiety | |
| No | 11 (61.1%) |
| Yes, not on medication | 3 (16.7%) |
| Yes, on medication | 4 (22.2%) |
| Total number of medications (medication burden) | 12 (8, 16) |
| Educational exposure | |
| Attended national PH meeting | 1 (6.7%) |
| Attended PH conference/seminar | 3 (20.0%) |
| Attended local PH meeting | 2 (13.3%) |
| Read PH book | 1 (6.7%) |
| Listened to PH podcast | 3 (20.0%) |
| PHA membership | 5 (33.3%) |
| PH support group member | 3 (20.0%) |
| Hours/day on Internet | 2.00 (1.50, 4.00) |
| Uses other PH learning resources | 14 (93.3%) |
| Learn PH: Internet search | 12 (80.0%) |
| Learn PH: Medical journal | 7 (46.7%) |
| Learn PH: Pamphlet | 10 (66.7%) |
| Learn PH: Podcast | 3 (20.0%) |
| Learn PH: Video | 5 (33.3%) |
| Health care utilization | |
| ED visits in past year | |
| 0 | 10 (55.6%) |
| 1 | 5 (27.8%) |
| 2 | 1 (5.6%) |
| 3 | 2 (11.1%) |
| Hospital admissions in past year | |
| 0 | 10 (55.6%) |
| 1 | 5 (27.8%) |
| 2 | 1 (5.6%) |
| 3 | 2 (11.1%) |
| PAH providers in past 5 yrs | |
| 1 | 4 (22.2%) |
| 2 | 9 (50.0%) |
| 3 | 3 (16.7%) |
| 4 | 1 (5.6%) |
| PAH phone encounters in past year | 9 (5, 19) |
| Has advance directive | 6 (33.3%) |
| Has advance care plan encounter | 3 (16.7%) |
| Ever referred to palliative care | 0 (0.0%) |
| Palliative care discussed | 0 (0.0%) |
Most participants (93%) reported seeking PH education beyond their clinical team, including attending a local PH meeting, conference, or podcast. 80% of the patients used the internet as a source of information while 46% of patients read medical journals, and 66% read pamphlets on PH. Education levels ranged from high school completion to advanced degrees, with 40% reporting annual household income above $100,000. Most participants lived with family members, and employment status ranged from full‐time work to retirement.
2.2. Qualitative Analysis – Concept Map of Patients' Lived Experience of PAH That the SMART‐PAH Course Addressed [Figure 2.]
Analysis of interview transcripts revealed four overarching domains in which patients sought support from a PAH‐focused educational platform: emotional, physical, educational, and structural. Within each domain, patients described both the content they needed and how they preferred to receive it. Together, these findings suggest that effective PAH education must address not only disease knowledge, but also the psychological, functional, and systemic challenges patients face [Table 3].
Table 3.
Qualitative framework from semi‐structured interviews following review of the SMART‐PAH video library.
| Domain | Theme | Representative quotes |
|---|---|---|
| Emotional | Anxiety | “Okay, I'm really scared right now and Google isn't really helping.” (Pt 13) |
| Depression | “I Googled it, as soon as she talked about it and I went home. It was just overwhelming, ‘cause, to me, what I was reading was like a death sentence, like ‘Some people live for two and a half years, or ten years,’ or whatever. I thought, ‘Well maybe I'll be on oxygen and all this.’ It was a lot for me. It got me depressed and all that.” (Pt 7) | |
| Embarrassment | “If you're walking up an incline, or you're out with people who don't really know your situation and want to walk up four flights of stairs, and then it kind of feels ridiculous to be like ‘I can't do that,’ without them having the full medical context.” (Pt 16) | |
| Physical | Shortness of breath | “You know, I don't see a big… it affecting me too much, except for walking up the stairs used to be an issue, and I notice lately I've been getting out of breath, so I'll be talking to somebody and notice that I have to stop.” (Pt 12) |
| Oxygen | “I learned more how some people do need oxygen. I'm not at that point yet. Hopefully I don't get to that point, but how when you do fly, the amount of oxygen in the air is less. That helped educate me of why they're being so mean and why I probably shouldn't fly. It's fully justified.” (Pt 6) | |
| Daily activity | “You know like I put in my dishwasher, my washer and drying. The dishwasher I did on my own. The washer/drying, I had a little help, but I did the wiring and all that. You've just got to know what you can do. Even some things that you would be scared of to do, you could possibly try because it's not physical.” (Pt 17) | |
| “Like I used to go to the gym and ride bikes for 40 min. I worked out for a good hour and a half. Now those are things I can't do too much of. I maybe do 15 min, and 15 min of something else, and 15 min of other things.” (Pt 8) | ||
| “I had a hard time not skipping straight to the travel and living with PAH, because I travel for a living (Travel Nurse), go places for three months and then come home, or go to the next place, and that was something I wanted to know about straight away. That was one of my biggest questions, ‘Can I still go on this next assignment? Am I allowed to?’” (Pt 9) | ||
| Educational | Gold standard | “The videos are really helpful in getting questions answered and getting them answered from a credible source.” (Pt 13) |
| “I didn't start out with a hope to get anything out of the videos, but I did gain a lot of information that I was totally clueless of…‘cause there's only so many questions that you can imagine, and a doctor doesn't always know what to tell you. This gives you everything that may or even not apply to you, in relation to the PAH.” (Pt 6) | ||
| Stigmatized topics | “The Palliative Care and Advance Directive videos definitely planted a seed. I know that these are things that I'm probably gonna need to start thinking about on some sort of timeline, and I already have advance directives, but now that I have a diagnosis and it's not just, ‘Man, I hope I don't get into a terrible car accident, or have a crazy head injury,’ it's more of a concrete thing now.” (Pt 9) | |
| “Well I think the funniest one that I can recall is the one about you know I told my husband, ‘Well you can't be on top anymore, ‘cause you'll crush my lungs and I'll die.’ We hadn't done that, ‘cause I could feel it, but I thought that was really good and was good to include a Sexual module because that's something that people are hesitant to ask about and talk about.” (Pt 10) | ||
| Empower self/family | “Knowledge is power and that understanding the disease process puts you at a huge advantage in living with it. The information in the modules I think only helped me to cope and deal with this new journey.” (Pt 9) | |
| “wanted to really know more about the disease, ‘cause I feel like I couldn't really describe why it happens, a lot of the medical terms, and having more tools in talking to people about it. It's been hard to have conversations with friends and family and explain it to people, and I don't really want my friends and family Googling it and finding things out from Dr. Google.” (Pt 16) | ||
| Medicine and non‐pharmacologic | “I also feel like I didn't really understand all of the treatment options. My doctor is fantastic, so I have nothing negative to say about her and I don't want to be overwhelmed, but having that whole section where we talk through the different therapies, the way they work, the different pathways, that was also really helpful.” (Pt 16) | |
| “It told me what I should not eat. It did definitely bring that to my aware, and some things that I didn't even take into consideration that I should not be eating. How to help manage my salt and levels, ‘cause I'm like, ‘Well that doesn't have that much salt,’ in my mind, but then when I went and really looked at the labels, I was like ‘I guess the video was right.’ It made me make better choices in my daily, what I eat.” (Pt 6) | ||
| Structural | Facilitate trust | “What is she talking about? Does she even know what she's talking about? Because these three doctors are telling me… So it's almost like maybe if the videos had been right away, I would have been more receptive to it.” (Pt 10) |
| Financial barriers | “I was getting used to taking the new medications and navigating the system of, ‘Oh my gosh, how do I get this medication: mail order, special pharmacy? Who do I have to talk to at my insurance company? Let's make sure I can do this virtual visit with my Provider, even though I'm out of town for work. I can't stop working, because I need insurance.’” (Pt 9) | |
| Access to expertise | “When I got diagnosed originally, I got diagnosed here in and they were like, ‘Hey, you've got this disease. It's no big deal. You might take a pill and it's fine.’ I didn't really understand, so when I got to Cleveland Clinic and they were like, ‘Hey, no. This is a really big deal, actually.’” (Pt 13) | |
| “I think that you don't always have access to your doctor, so I could rewatch the videos, if I wanted to, but don't want to keep asking your doctor the same question over and over again.” (Pt 12) | ||
| Facilitate self‐advocacy | “It took me a while to get diagnosed and I went through, ‘Oh, you've got asthma. You've got anxiety. You're fat,’… I was really just trying to figure out like was it real for me. Doctors sometimes make you feel like you're imagining stuff.” (Pt 13) | |
| “It gave me more understanding, the video, but then I could ask the doctor more questions about PAH with her. I was more comfortable asking her about it, a little bit more understanding and getting more information from her. That helped me.” (Pt 7) |
2.2.1. Emotional Domain
Patients consistently described a profound emotional burden throughout the PAH disease course, including anxiety, depression, and embarrassment, particularly related to physical limitations in social settings. Anxiety was common across interviews, with patients feeling ill‐equipped to process a rare, life‐limiting diagnosis in the absence of reliable resources. Many reported that unguided internet searches early after diagnosis amplified fear and distress rather than alleviating it [Table 3]. Consequently, patients expressed a strong preference for educational content delivered early in the disease course, before fear and misinformation had time to take hold. Several reflected that access to the SMART‐PAH library at the time of diagnosis would have been transformative:
If somebody had just been like, ‘Hey, you're freshly diagnosed, and here is this tool. Just go through it at your leisure and it'll help you.’ That would have been so life‐changing for me, when I got diagnosed, because I had so many questions….
(Pt 13)
Patient narratives embedded within the videos were particularly valued as a source of emotional reassurance. One participant highlighted a video featuring a young woman with severe PAH who was now running miles daily:
I really liked that because I thought, ‘Wow, you know, that's gonna encourage me with my back, too’.
(Pt 10)
Seeing real individuals living well with PAH helped reframe the diagnosis as manageable and provided hope in a way that clinical narration could not. Patients also noted that the videos offered a trustworthy alternative to unguided internet searching:
Before, reading Googling and everything got me a little depressed about the outcome and other things. I got overwhelmed by that, but the videos kind of eased my fears a little bit.
(Pt 7)
Some participants suggested that a more interactive format tailored to a patient's prior lifestyle and current limitations could further enhance the platform's emotional impact.
You maybe could've put a more interactive activity that actually is tailored towards, ‘What was your typical life like before the episode of when you developed the PAH?’ and then be able to have it travel through alternatives to riding a bike or doing all your grocery shopping yourself, so you give them a comparison, a contrast, to how you can meet in the middle somewhere with a safe, after PAH life.
(Pt 6)
2.2.2. Physical Domain
Shortness of breath was the symptom patients most consistently identified as central to daily life. Patients primarily assessed symptom severity by its impact on daily activities rather than the sensation of dyspnea itself. These limitations affected household tasks, exercise, and employment. Treatment burden was particularly prominent, with patients describing complex medication regimens, infusion maintenance, and side effects that created considerable daily demands. Concerns about supplemental oxygen centered less on breathlessness itself and more on the perceived loss of independence and disruption to daily life.
Patients' descriptions of what they sought from the platform reflected these daily realities, with a clear preference for practical, concrete guidance over abstract clinical information. Patients valued real‐life examples, including demonstrations of exercises and discussion of feasible daily activities. This was perhaps best illustrated by the dietary content, where specific guidance on food choices prompted meaningful behavior change:
It told me what I should not eat… when I went and really looked at the labels, I was like ‘I guess the video was right’.
(Pt 6)
Several participants suggested that links to additional resources could further extend the platform's practical value in daily life:
What I would've found maybe more helpful were links to places that have low‐sodium recipes, ‘cause I'm still thinking in ingredients.
(Pt 9)
Alongside practical guidance, patients emphasized the importance of maintaining a sense of agency in disease management.
Sure this is a disease that there's no cure, but if you don't believe in things, what you can do, it ain't gonna work for you.
(Pt 17)
2.2.3. Educational Domain
Patients described PAH information as simultaneously overwhelming and unreliable, leaving them unsure where to find credible content or even what questions to ask. Against this backdrop, the SMART‐PAH library addressed several unmet educational needs, including pharmacologic and non‐pharmacologic management, stigmatized topics, and resources for family members and caregivers. When obtained from a trusted source, patients framed disease knowledge as empowering rather than anxiety‐provoking, with one participant reflecting that understanding the disease process puts a patient “at a huge advantage in living with it” (Pt 9).
Beyond general knowledge gaps, patients identified specific content where the library proved particularly valuable. Topics often avoided or inadequately addressed in clinical settings were frequently cited as areas where the library filled a meaningful void. One participant described how the sexual health module prompted a conversation with their partner: “I re‐watched that twice. I was like, Hey Baby. Come here. Watch this” (Pt 6), while another reflected that the palliative care video “definitely planted a seed” for conversations about advance directives they had not previously considered (Pt 9). Patients also emphasized the value of content that could be shared with loved ones struggling to understand the disease, with one noting she had sent videos to friends who had been asking what was wrong with her (Pt 6). The credibility of specialist‐developed content was explicitly recognized as a distinguishing feature:
The videos are really helpful in getting questions answered and getting them answered from a credible source.
(Pt 13)
Beyond the content itself, patients reflected on how the format and delivery of the SMART‐PAH library shaped their learning experience. Language accessibility emerged as an important design consideration, with patients expressing a range of preferences regarding clinical complexity. Some appreciated the detailed content, while others felt the vocabulary should be simplified for those without a medical or science background:
I'm halfway smart. I think some of the vocabulary could be daunting to others who don't have any type of science background. Maybe that could be broken down a little more….
(Pt 6)
Others found the balance well calibrated, noting the content was detailed enough to be meaningful without feeling overwhelming (Pt 13). The audiovisual format was broadly valued, with patients describing the combination of slides and narration as more accessible than text‐based resources (Pt 15). Several also noted that the videos were more engaging than expected:
I thought it was really comprehensive and really well done and it wasn't boring. I know that sounds kind of silly. Like you think this stuff is dry, but I wasn't bored.
(Pt 13)
Convenience and self‐pacing were crucial to engagement, with patients valuing the ability to access content on their own schedule rather than in a structured clinical setting (Pt 6). Patients also identified an opportunity for improvement, suggesting that the ability to jump to specific sections would facilitate review and revisiting of content.
It had to go all the way back to the previous one at the beginning and then come through, and that was kind of aggravating to me.
(Pt 2)
2.2.4. Structural Domain
Patients identified several systemic and structural challenges that affected engagement with PAH care. Navigating financial and insurance issues was frequently described as complicated and emotionally exhausting. Limited access to PAH expertise, particularly at non‐specialist centers, was another important barrier and often contributed to delayed recognition of disease severity. These challenges were compounded by difficulty self‐advocating and by confusion arising from conflicting information provided by multiple clinicians, which contributed to confusion, skepticism, and uncertainty about whom to trust early in the disease course.
The SMART‐PAH platform helped address several of these barriers. Patients described revisiting modules as their circumstances evolved and new questions emerged, particularly the financial and insurance content:
You had other videos on Finance and stuff along that line, or how you get help. I wrote some of that stuff down so I can have it at the tip of my fingers.
(Pt 8)
The video library was viewed as an accessible source of information when physician access was limited:
I think that you don't always have access to your doctor, so I could rewatch the videos if I wanted to, but don't want to keep asking your doctor the same question over and over again.
(Pt 12)
Patients also reflected that reinforcement of provider guidance through the video content helped strengthen trust in their care team:
What is she talking about? Does she even know what she's talking about? Because these three doctors are telling me… So it's almost like maybe if the videos had been right away, I would have been more receptive to it.
(Pt 10)
The platform also promoted self‐advocacy, with patients feeling better equipped to engage meaningfully with their care team after viewing the videos:
It gave me more understanding, the video, but then I could ask the doctor more questions about PAH with her. I was more comfortable asking her about it.
(Pt 7)
3. Discussion
In this mixed‐methods pilot feasibility study, SMART PAH was feasible, acceptable, and associated with improved patient activation in patients with PAH. Patients described the platform as a credible, emotionally supportive resource that addressed informational needs not routinely met in clinical care. Patient activation significantly improved following completion of SMART PAH.
Conventional patient education is largely confined to brief clinical encounters constrained by limited time. Delays in diagnosis, unequal access to specialist care, resource disparities, and variability in provider communication contribute to frustration, depression, anxiety and emotional distress. Online and published PAH educational materials vary widely in quality, accuracy, scope, and readability as seen in a recent analysis of more than 100 websites about PAH [17]. Additionally, educational materials are not at a reading level accessible to most patients. Patients may also struggle to raise sensitive topics despite global survey data showing many desire greater discussion of emotional symptoms with their PH specialist but perceive limited provider empathy [9]. To our knowledge, this is the first study evaluating patient perceptions of a PAH specialist‐developed video‐based educational platform for individuals living with PAH. Participants described the SMART‐PAH Library as credible, accessible, and supportive of their efforts to understand and manage a complex and often overwhelming disease. Their experiences are consistent with prior qualitative and observational research studies documenting the significant physical, psychological, and social burdens associated with PAH [4, 24, 25]. Our findings extend this literature by suggesting that structured, reliable video‐based education may reduce uncertainty, build confidence, and support self‐management in PAH.
Participants described difficulty absorbing information during clinical visits, particularly amid the emotional shock and cognitive fatigue accompanying PAH. They also noted that topics such as intimacy, mental health, palliative care, and financial navigation are rarely addressed in depth during routine care. These findings are consistent with prior studies describing persistent gaps in PAH patient education [15, 26], and suggest that video‐based learning may complement clinical care by allowing patients to revisit information on their own timeline and share educational content with others.
The credibility of the material was especially important to participants. Many described feeling anxious or discouraged when searching online for information and reported relief at having a trustworthy source that counteracted misinformation and confusion. The ability to share videos with spouses, friends, and caregivers also emerged as an important benefit, with several participants noting that improved understanding among their support systems helped them feel less isolated and more supported. Given the essential but often overlooked role of caregivers in PAH management, caregiver‐focused educational content may be especially valuable, consistent with prior studies linking caregiver education to improved caregiver quality of life [27].
Importantly, participants felt that videos improved the quality of clinical interactions by helping them arrive at appointments with more focused questions and a clearer understanding of what to expect. This suggests that video‐based education may enhance patient activation and engagement, making clinical encounters more productive while reducing pressure to absorb complex information during limited encounter time. These findings align with prior studies demonstrating improved self‐efficacy and health behaviors following video‐based educational interventions in other chronic diseases [19]. In practice, SMART PAH could be integrated throughout the care pathway, including at diagnosis to reduce distress, between visits to reinforce understanding, or before major treatment decisions to support informed consent.
This study's strengths include the use of rigorous qualitative methods, multiple coders, and inclusion of participants whose demographic and clinical characteristics reflect many individuals living with PAH.
4. Limitations
Although thematic saturation was achieved, all participants were recruited from a single academic tertiary care center, which may not reflect care or access patients receive in the community. The cohort also lacked demographic diversity, as most participants were White women and English fluency was required. Individuals who are more technologically comfortable or intrinsically motivated may have been more likely to participate, potentially limiting representativeness. Additionally, a minority of enrolled patients did not complete the course; the higher rate of incident PAH diagnosis among non‐completers suggests that the adjustment period following a new diagnosis may serve as a barrier to engagement with digital education platforms. This was the qualitative portion of a pilot feasibility and acceptability study looking at the SMART PAH course that was developed with the intention to conduct a larger adequately powered efficacy trial. Future studies should further examine how socioeconomic status, health care literacy, cultural background, practice access, and language differences influence engagement with digital education. Additional areas of study include the impact of this asynchronous digital education platform on peer support, health behaviors, and use of artificial intelligence.
5. Conclusions
In summary, our findings suggest that a video‐based educational intervention such as SMART‐PAH may help address large gaps in PAH education by providing credible, accessible, patient‐centered information that supports emotional processing, communication, and self‐management. Integrating such resources into routine care may strengthen patient engagement and help alleviate some of the informational and psychosocial burdens associated with PAH.
Author Contributions
Denise G. Sese, Kathleen Neuendorf, and Kristin B. Highland conceived and designed the study. Denise G. Sese, Purnadeo Persaud, Kathleen Neuendorf, and other members of the SMART PAH study team created the SMART‐PAH course. R.P., Purnadeo Persaud, Mirha Mahmood, Natalie Taylor and Kathleen Neuendorf recruited participants and collected data. Denise G. Sese, Logan J. Harper, Purnadeo Persaud, and Lauryn Durham independently coded and analyzed qualitative interview data. Y.W. and X.W. performed statistical analyses. Denise G. Sese and Purnadeo Persaud drafted the manuscript. All authors participated in data interpretation, critically revised the manuscript for important intellectual content, and approved the final version for submission.
Ethics Statement
This study was approved by the Cleveland Clinic Institutional Review Board (Protocol #22752). All participants provided written informed consent prior to study enrollment.
Conflicts of Interest
D.G.S. reports speaker and consulting fees from United Therapeutics and Merck Sharp and Dohme. K.B.H. reports fees as a consultant, member of a steering committee, advisory board, or speaker's bureau, or receives grants and contracts from Atyr Pharmaceuticals, Avalyn Pharmaceuticals, Boehringer Ingelheim, Forse Pharmaceuticals, Gossamer Bio, Johnson & Johnson, Merck, Mitsubishi, Orph AI, Pulmonovant Pharmaceuticals, and United Therapeutics. All other authors declare no conflicts of interest.
Guarantor
D.G.S. takes responsibility for the integrity of the data and the accuracy of the data analysis.
Supporting information
Supporting File
Acknowledgments
The authors would like to thank the patients who participated in this study, the Pulmonary Hypertension research team, and the Cleveland Clinic Media Relations team for professional videography. We thank the additional members of the SMART PAH study team which includes Rachel Powers, John Paul Iskandar, Abhishek Bhardwaj, Kanza N. Qaiser, Yifan Wang, Xiaofeng Wang PhD, Hailey Rysczka, Aiya Elghaffar, Mirha Mahmood, Natalie Taylor for their work in developing and recruiting for the SMART PAH intervention. The authors also thank the PAH patient champion who helped interview patients and analyze the qualitative data, and Aaron Hessler who helped create the SMART‐PAH video course. This study was supported by the Research Program Committee of the Cleveland Clinic Foundation (RPC, Grant 3477). The funder had no role in study design, data collection, analysis, interpretation, or manuscript preparation.
Sese DG, Persaud P, Durham L, Neuendorf K, Harper LJ, Highland KB, “Patient Perceptions of a Video‐Based Educational Platform for Pulmonary Arterial Hypertension: A Qualitative Study of the SMART‐PAH Course,” Pulmonary Circulation 16 (2026): e70427, 10.1002/pul2.70427.
Denise G. Sese and Purnadeo Persaud contributed equally as co‐first authors.
Logan J. Harper and Kristin B. Highland contributed equally as co‐senior authors.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. De‐identified data and the study's codebook are available from the corresponding author upon request. Due to privacy concerns and risk of participant identification, interview transcripts cannot be shared.
References
- 1. Galiè N., Humbert M., Vachiery J. L., et al., “2015 ESC/ERS Guidelines for the Diagnosis and Treatment of Pulmonary Hypertension: The Joint Task Force for the Diagnosis and Treatment of Pulmonary Hypertension of the European Society of Cardiology (ESC) and the European Respiratory Society (ERS): Endorsed by: Association for European Paediatric and Congenital Cardiology (AEPC), International Society for Heart and Lung Transplantation (ISHLT),” European Heart Journal 37, no. 1 (2016): 67–119. [DOI] [PubMed] [Google Scholar]
- 2. Delcroix M. and Howard L., “Pulmonary Arterial Hypertension: The Burden of Disease and Impact on Quality of Life,” European Respiratory Review 24, no. 138 (2015): 621–629. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3. Pfeuffer‐Jovic E., Joa F., Halank M., Krannich J. H., and Held M., “Anxiety, Depression and Quality of Life in Pulmonary Hypertension: A Comparison of Incident and Prevalent Cases,” Respiration 101, no. 8 (2022): 784–792. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4. Matura L. A., McDonough A., and Carroll D. L., “Symptom Interference Severity and Health‐Related Quality of Life in Pulmonary Arterial Hypertension,” Journal of Pain and Symptom Management 51, no. 1 (2016): 25–32. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5. Fuge J., Park D. H., von Lengerke T., et al., “Impact of Pulmonary Arterial Hypertension on Employment, Work Productivity, and Quality of Life—Results of a Cross‐Sectional Multi‐Center Study,” Frontiers in Psychiatry 12 (2021): 781532. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6. Cipolletta S., Ravasio G., and Bussotti M., “Sexual and Reproductive Health in Women With Pulmonary Hypertension: A Qualitative Study,” Archives of Sexual Behavior 51, no. 3 (2022): 1647–1657. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7. Ford H. J., Brunetti C., Ferrari P., et al., “Exploring the Patient Perspective in Pulmonary Hypertension,” European Respiratory Journal 64, no. 4 (2024): 2401129. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8. McGoon M. D., Ferrari P., Armstrong I., et al., “The Importance of Patient Perspectives in Pulmonary Hypertension,” European Respiratory Journal 53, no. 1 (2019): 1801919. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9. Bunclark K., Newman J., Ghani H., et al., “The Pulmonary Hypertension Global Patient Survey: Physical and Psychosocial Impacts on Health‐Related Quality of Life,” Pulmonary Circulation 16, no. 1 (2026): e70264. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10. Depping M. K., Uhlenbusch N., Härter M., Schramm C., and Löwe B., “Efficacy of a Brief, Peer‐Delivered Self‐Management Intervention for Patients with Rare Chronic Diseases: A Randomized Clinical Trial,” JAMA Psychiatry 78, no. 6 (2021): 607–615. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11. Correia J. C., Waqas A., Assal J. P., et al., “Effectiveness of Therapeutic Patient Education Interventions for Chronic Diseases: A Systematic Review and Meta‐Analyses of Randomized Controlled Trials,” Frontiers in Medicine 9 (2022): 996528. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12. Turner A., Anderson J. K., Wallace L. M., and Bourne C., “An Evaluation of a Self‐Management Program for Patients With Long‐Term Conditions,” Patient Education and Counseling 98, no. 2 (2015): 213–219. [DOI] [PubMed] [Google Scholar]
- 13. Ivarsson B., Ekmehag B., Hesselstrand R., Radegran G., and Sjöberg T., “Perceptions of Received Information, Social Support, and Coping in Patients With Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension,” Clinical Medicine Insights: Circulatory, Respiratory and Pulmonary Medicine 8 (2014): 1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14. Kingman M., Hinzmann B., Sweet O., and Vachiéry J. L., “Living With Pulmonary Hypertension: Unique Insights From an International Ethnographic Study,” BMJ Open 4, no. 5 (2014): e004735. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15. Gillmeyer K. R., Shusterman S., Rinne S. T., Elwy A. R., and Wiener R. S., “Gaps in Access to Pulmonary Hypertension Care and Opportunities for Improvement: A Multi‐Site Qualitative Study,” BMC Pulmonary Medicine 25, no. 1 (2025): 355. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16. Martin V., Sarker T., Slusarek E., et al., “Conversational Avoidance During Existential Interviews With Patients With Progressive illness,” Psychology, Health & Medicine 25, no. 9 (2020): 1073–1082. [DOI] [PubMed] [Google Scholar]
- 17. Saleh D., Fisher J. H., Provencher S., Liang Z., Ryerson C. J., and Weatherald J., “A Systematic Evaluation of the Quality, Accuracy, and Reliability of Internet Websites about Pulmonary Arterial Hypertension,” Annals of the American Thoracic Society 19, no. 8 (2022): 1404–1413. [DOI] [PubMed] [Google Scholar]
- 18. Navarro O., Escrivá M., Faubel R., and Traver V., “Empowering Patients Living With Chronic Conditions using Video as an Educational Tool: Scoping Review,” Journal of Medical Internet Research 23, no. 7 (2021): e26427. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19. Deshpande N., Wu M., Kelly C., et al., “Video‐Based Educational Interventions for Patients With Chronic Illnesses: Systematic Review,” Journal of Medical Internet Research 25 (2023): e41092. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20. Kovoor J. G., McIntyre D., Chik W. W. B., Chow C. K., and Thiagalingam A., “Clinician‐Created Educational Video Resources for Shared Decision‐Making in the Outpatient Management of Chronic Disease: Development and Evaluation Study,” Journal of Medical Internet Research 23, no. 10 (2021): e26732. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21. Tong A., Sainsbury P., and Craig J., “Consolidated Criteria for Reporting Qualitative Research (COREQ): A 32‐item Checklist for Interviews and Focus Groups,” International Journal for Quality in Health Care 19, no. 6 (2007): 349–357. [DOI] [PubMed] [Google Scholar]
- 22. Huang R. RQDA: R‐Based Qualitative Data Analysis [Internet]. 2018, https://rqda.r-forge.r-project.org/.
- 23. Badesch D. B., Raskob G. E., Elliott C. G., et al., “Pulmonary Arterial Hypertension,” Chest 137, no. 2 (2010): 376–387. [DOI] [PubMed] [Google Scholar]
- 24. Bussotti M. and Sommaruga M., “Anxiety and Depression in Patients With Pulmonary Hypertension: Impact and Management Challenges,” Vascular Health and Risk Management 14 (2018): 349–360. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25. Guillevin L., Armstrong I., Aldrighetti R., et al., “Understanding the Impact of Pulmonary Arterial Hypertension on Patients' and Carers' Lives,” European Respiratory Review 22, no. 130 (2013): 535–542. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26. Yee D. C., Banerjee D., Vargas S. E., et al., “Sexual Health‐Related Quality of Life in Women With Pulmonary Arterial Hypertension: Compensating for Loss,” Annals of the American Thoracic Society 19, no. 7 (2022): 1122–1129. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27. Corry M., While A., Neenan K., and Smith V., “A Systematic Review of Systematic Reviews on Interventions for Caregivers of People with Chronic Conditions,” Journal of Advanced Nursing 71, no. 4 (2015): 718–734. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Supporting File
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. De‐identified data and the study's codebook are available from the corresponding author upon request. Due to privacy concerns and risk of participant identification, interview transcripts cannot be shared.