When her primary care doctor offered her an SSRI prescription for anxiety, Carol Liddle was initially caught off guard. In six years of treatment for COPD, her mental health had never been part of the discussion. And when it came up, she said, his nonchalance was worrisome.

“I was concerned about the general practitioner being so off-hand and just offering pills,” she said.

Liddle is physically isolated because she lives far from her town center and cannot drive. His isolation can lead to mental health issues like depression, which can in turn lead to deconditioning, weight loss and frailties. She said that as COPD patient, such a negative feedback loop “can be deadly to us.”

Recent research has found that up to 80% of COPD patients like Liddle may experience anxiety, and the rates of anxiety and depression in people with COPD may be even higher than those of people with other chronic illnesses.

Despite this high prevalence of such conditions alongside COPD, research has also shown that “only a limited number of studies” have addressed how to best treat mental health issues that co-occur with COPD. Because several types of medication for anxiety and depression, such as SSRIs, may have interactions that worsen the symptoms of COPD, doctors and care managers may consider non-pharmaceutical approaches as a way to assist patients with both physical and mental symptoms at the same time.

Taking control when feelings of anxiety may spiral

Anxiety and depression are often linked with COPD, but the question of which illness causes the other isn’t completely clear to researchers, says psychologist Amanda Mathew, an assistant professor at Rush University. For example, people with anxiety and depression are more likely to smoke — which could in turn increase the risk of developing COPD. On the other hand, aspects of COPD can exacerbate pre-existing conditions of anxiety and depression. “Maybe as their activities become more limited, as they’re cut off from doing things they used to enjoy,” she explained. “That’s something that worsens their problems with mood.”

Mathew said that patients with anxiety may be more vulnerable to a psychological phenomenon known breathlessness catastrophizing. Catastrophizing, or catastrophic thinking, was originally conceptualized by researchers as “irrationally negative forecast[ing] of future events.” When this practice of imagining the worst-case scenario is combined with COPD, it may result in a negative feedback loop where breathlessness and panic both spike.

“If any of us have that sensation that we’re unable to get a good breath, that’s very anxiety-provoking. But that can spiral in patients who have more sensitivity to that,” Mathew said. “That panicky feeling can lead to more hyperventilation, which leads to worsened breathing problems.”

Patients who experience this kind of thinking may become panicked and immediately think they need to go to the ER.

Programs such as the phone-based Lung Hotline from the American Lung Association can teach COPD-specific coping skills to patients whose symptoms are worsened by anxiety . Pursed lip-breathing is one such technique, which teaches patients how to feel more in-control of their breath by taking slower, deeper breaths. “That [creates] a positive feedback loop,” Mathew said. “You can send that signal back [to the brain] that there’s not acute danger, there’s not a reason to have severe panic symptoms. For a lot of people, those techniques are a good place to start.”

Smoking: “There’s never a bad time to quit”

When it comes to the care of people with COPD, quitting smoking is one of the most effective steps that can be taken: “It’s the only way to slow the progression of lung function over time,” Mathew explained. “It’s really medically critical that people with COPD quit, but at the same time there are a lot of challenges to doing that.”

Smoking cessation programs may also help alleviate anxiety, as smoking has been strongly linked to mental health issues in people with COPD.

Yet 30-50% of people with COPD continue to smoke after receiving their diagnosis, according to Mathew, who is currently working with a group of COPD patients to develop best practices on approaching smoking cessation.

Her program employs cognitive behavioral strategies and a focus on mindfulness, such as encouraging patients to avoid smoking by engaging in “incompatible activities” where they can’t smoke, such as meeting family and friends in spaces where smoking is prohibited.

One of the core ideas behind the program is avoiding judgemental narratives that blame or shame patients for smoking. Mathew said most patients are well-aware of the drawbacks of continued smoking. Instead of focusing on the past, she said, she tells them “there’s never a bad time to quit” — and focuses on the short-term benefits in regaining breath capacity that patients can receive quickly after cessation. “For a lot of people, when they quit, they start to be able to participate in more activities and have less shortness of breath,” she said. “There can be something really rewarding about making that positive change in their health.”

Finding the joy in time together

Research has also shown that whether COPD patients have social support or not is strongly linked to their symptoms of both anxiety and depression, and that patients with social support have reduced anxiety symptoms and better overall functioning compared to those who don’t. As the CEO of HealthSense, an Aging Life Care practice, Anne Sansevero encourages her patients to consciously create time and space for positive interaction together.

“Don’t have them spend their time doing things like housework, or mundane tasks,” when the patient and their family meet for time together, she suggested. “Get the joy in there — whether that’s celebrating art or going out into a garden.” For patients who experience congestion issues, afternoons may be more ideal for meeting with loved ones, she said, because congestion may be worse after waking up.

The son of one of Sansevero’s patients with COPD, for instance, regularly takes his mother to jazz concerts and public talks. The son, who did not want to be identified for reasons of privacy, says his 90-year-old mother was diagnosed with COPD 15 years ago. They have to make accommodations for her transportation as she now requires a wheelchair and oxygen. She’s still happy to sing along at the movie theatre, though: “I had to shush her from singing along,” at their most recent movie visit, her son said. “She’s in a great mood during those outings.”

Connecting to virtual communities around the globe

But not all patients have a devoted son who lives nearby. Because COPD can affect mobility in general, and because patients may lack transportation options, online support can be a key avenue for patient support. Liddle, for instance, notes that she cannot take part in the follow-up sessions for her pulmonary rehabilitation program, exercise classes or activities at the local community center because she cannot drive. “Our town center is full of empty shops and is very hilly, and the lack of local services all add to an enforced isolation.”

However, there are now more resources that patients can access online if in-person resources, like pulmonary rehabilitation groups, group counseling, or exercise programs, are not accessible or available in their area.

On Twitter, Liddle and others living with COPD as well as medical professionals and researchers share new medical findings and their experiences at COPD conferences under the hashtag #COPD. People also share personal stories and photos, and staff who run support groups and rehabilitation programs share photos of their smiling participants.

Care managers can research such support options and make sure patients have access through their computer or phone to such resources, especially when transportation or mobility is restricted.

Liddle said online support has played a critical role in her treatment. Connection to other patients online helps ward off depression and feelings of isolation. “This is why some of the online support is vital and outstanding,” she said. She relies on them heavily due to her limited access to transportation. “Under these circumstances, support through online groups are a vital lifeline.”

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