“Mental Health in Pulmonary Arterial Hypertension”, September 17, 2024
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ROBERT PLETICHA (Moderator)
Welcome, everyone, to today’s webinar on mental health in pulmonary arterial hypertension (PAH). My name is Robert. I’m a project manager with Admedicum and I’ll be moderating today’s session. This is the sixth webinar in a series organized by the Alliance for Pulmonary Hypertension, a patient-led, non-profit organization that promotes the exchange of knowledge and expertise about pulmonary hypertension and living with the condition. You can watch previous webinars on our website and read the transcripts as well. Mental health is a crucial topic because, over the years, we’ve made a lot of progress in managing pulmonary hypertension with new treatments and surgical options. However, the emotional and psychological challenges can be as difficult to manage as the physical symptoms. Mental health is a key aspect of holistic care, and addressing it can significantly improve the well-being of patients living with pulmonary arterial hypertension.
Today, we’ll hear from some distinguished experts in the field. First, we have Professor Karen Olsson from Hannover Medical School, Germany. Then, Dr. Greg Rawlings from the University of Sheffield will present. Lastly, we have Sophia Estevas, who will share her personal journey and a patient’s perspective on this important topic. Please feel free to submit questions for our panelists in the chat. With that, Professor Olsson, please go ahead.
DR: KAREN OLSSON
Thank you so much for the introduction. I’m very happy to be here. Before we start, I want to send thoughts to Sandip Za, who wanted to be here, but sadly, his son passed away, and he couldn’t attend today. We can only assume what he’s going through. Our thoughts are with him. So, I’ll begin with my disclosures. As you mentioned, I’m at Hannover Medical School, where I conduct diagnostics, both invasive and non-invasive. I’m often the first to diagnose pulmonary hypertension, and this diagnosis can be a significant moment for patients. It often follows years of suffering and misdiagnosis. With the diagnosis, patients get confirmation that their symptoms are real, but they also face new questions: Can I work? Can I have a family? Can I travel? Will I grow old? In the early days of pulmonary hypertension treatment, our focus was just on keeping patients alive. In recent years, however, studies have shown that many patients with pulmonary hypertension suffer from mental disorders or are severely mentally impaired after diagnosis. This led us to initiate the PEPPAH study—standing for mental disorders and quality of life in patients with pulmonary hypertension, though we also playfully reference “Peppa Pig” since this idea started with the young daughter of one of our psychiatrists. This study, published in Frontiers in Psychiatry, sought to deepen our understanding of mental health in PH patients.
Defining the Problem
The hypothesis was that pulmonary arterial hypertension is a rare, life-threatening disease with no cure, and the diagnosis is often delayed. It’s a progressive disease, and fear about the future, limitations in life, and working capacity are common concerns among patients. Prior studies largely relied on self-rating questionnaires, but we wanted to conduct a large,prospective, multicenter study with clinical interviews, the gold standard for mental
health diagnosis. In partnership with the University of Giessen and Marburg, Germany’s two largest pulmonary hypertension centers, we enrolled 217 patients. We collected routine clinical data and administered lifestyle questionnaires on topics like sports, alcohol, and relationships. We used standardized psychological questionnaires such as the Hospital Anxiety and Depression Scale (HADS) and the BREATH quality of life score. Trained
students or psychiatrists conducted clinical interviews.
Results
Our study showed that mental disorders are significantly more prevalent in pulmonary hypertension patients than in the general population. About 23% of PH patients had major
depressive disorder, and 15% had a panic disorder. Over one-third of patients had at least one mental disorder. Depression, in particular, was more common, with 23% of pulmonary hypertension patients experiencing it compared to 8% in the general population. Panic
disorder was also three to eight times more common in pulmonary hypertension patients. We found that about 38% of patients had an adjustment disorder after diagnosis. Of those, around 50% were at risk of developing another mental disorder. An adjustment disorder is a maladaptive response to a psychological stressor. While it’s normal to experience stress with a life-altering diagnosis, the response determines if it qualifies as a disorder.
Screening for Mental Disorders
One question was how we could screen for mental disorders in routine clinical
practice. While a full clinical interview is ideal, it’s not feasible for all patients due to
resource limitations. We wanted to test if the HADS score, a simpler tool, could help
identify patients needing psychological support. Our findings suggest it could serve
as a fast, effective screening tool.
Conclusions
In conclusion, mental disorders are common in pulmonary hypertension and negatively impact quality of life. Mental health is an essential part of pulmonary hypertension care, and the HADS score may help screen for mental health issues. Future studies should focus on interventions for mental health and improving access to psychological support.
DR. GREGG RAWLINGS
Thank you. My name is Greg Rawlings. I’m a clinical psychologist and lecturer at the University of Sheffield. While my clinical work is in the NHS with adults with learning disabilities, my research has focused on PH in collaboration with PHA UK and Sheffield Teaching Hospitals.
Defining the Problem
Anxiety and depression are common in pulmonary hypertension patients. A meta-analysis of 24 studies involving over 2,000 PH patients showed that around 28% had clinical depression, and 37% had clinical anxiety—significantly higher than in the general population.
Predictors of Anxiety and Depression
Our studies show that demographic factors like age, gender, and ethnicity don’t significantly influence the likelihood of depression and anxiety in pulmonary hypertension. Rather, psychosocial factors such as coping mechanisms and self-compassion play a critical
role. Cognitions (thought patterns) tend to be linked to anxiety, whereas behaviors
are more connected to depression. This helps in designing targeted therapies.
Psychological Interventions
We conducted a systematic review of psychological interventions for pulmonary hypertension patients. Although limited, the evidence suggests these therapies can reduce symptoms of depression and anxiety. However, only 77 patients in total had received psychological therapy, highlighting a gap in available treatments relative to the need.
One of our studies involved a self-help intervention based on CBT. Participants reported reduced symptoms of anxiety and depression, suggesting this approach could be effective. We’ve made these CBT booklets available through PHA UK.
Ideas for Future Research
Based on our findings, future research should:
- Identify factors associated with anxiety and depression in PH.
- Explore other mental health conditions in PH.
- Improve methods to identify patients at risk of mental health issues.
- Develop strategies for both standalone and integrated interventions.
- Study mental health among non-professional caregivers of PH patients.
Discussion and Q&A
Dr. Olsson: I have a question. Given the long waiting times for psychological support, have you considered digital options like app-based therapy?
Dr. Rawlings: Yes, absolutely. For patients outside the UK, we provided digital versions of the booklets. We’re exploring an app to improve access and integrate various resources, reducing barriers like stigma and limited access.
Sophia Estevas: [via text comment] Many pulmonary hypertension patients feel intimidated by gyms because of breathlessness. I bring oxygen to the gym, which is another challenge.
Securing oxygen approval can also be difficult.
Dr. Olsson: Absolutely. Moving towards less invasive diagnostic approaches could improve patient experiences and reduce downtime, enhancing quality of life.
Robert Pleticha: Dr. Rawlings, if a patient organization wanted to translate the
booklet series, should they contact you or PHA UK?
Dr. Rawlings: They should reach out to PHA UK, which funded the trials and holds
the copyright. We’re open to international collaborations.
Closing Remarks
Robert Pleticha: Thank you to our panelists for sharing your insights. This recording
and slides will be available on the Pulmonary Hypertension Knowledge Sharing Platform in a few days. Thanks, everyone, and have a good evening.