Written by James Coker | Senior Editorial Assistant, European Medical Journal | @EMJJamesCoker
Quality of life in asthma patients is severely impacted, with many heavily limited in their day-to-day activities, and a worrying proportion experiencing anxiety and depression, according to findings from the ‘Still Fighting for Breath’ study that was presented at the European Respiratory Society (ERS) International Congress 2017, held in Milan, Italy. The results are likely to spark calls for change in the way healthcare professionals treat their patients, and to focus on educating patients to better self-manage their condition.
Conducted by the USA-based Allergy & Asthma Network, the leading non-profit patient and advocacy organisation, the ‘Still Fighting for Breath’ study was based on online surveys and interviews with adult patients and caregivers of paediatric patients with asthma in 10 countries: the UK, Germany, France, Italy, Spain, Portugal, Canada, Brazil, Japan, and China.
Ms Tonya Winders, President and CEO of the Allergy & Asthma Network who presented the study in a press conference on 12th September 2017 at the ERS Congress, said: “As we know, asthma affects >334 million patients globally. It impacts patients and caregivers on a daily basis in so many ways, limiting physical activities, social activity, [has a] psychological impact, and [causes] emotional struggles.”
Among the findings, an astonishing 1,333 patients (94% of the respondents) reported that they had partially controlled or uncontrolled asthma, as defined by Global Initiative for Asthma (GINA) guidelines. Only 42% self-recognised that they lacked control, displaying a large divide between those patients whose asthma actually wasn’t controlled versus the patient’s perception of control. Additionally, 86% of patients reported having had an asthma flare-up in the previous 12 months and, of those, half stated that they required >24 hours to recover emotionally and psychologically, which was previously thought to be an unusual occurrence. “The question we have as patient advocates is: are we even addressing that aspect of the disease?” asked Ms Winders. “I believe most clinicians, even those esteemed clinicians here at the congress, would suggest that this is an under-served area and an unmet need that we must continue to pay attention to.”
With regard to the impact on daily activity, 9 out of 10 of the adult patients and two-thirds of the children with asthma recorded that they found the disease limited their day-to-day lives. Of the caregivers included in the analysis, 69% felt limited by their child’s asthma. “This is significant,” declared Ms Winders. “These are parents who are unable to go to work, children who are unable to go to school: asthma still remains the number one reason children miss school.”
Worrying statistics emerged relating to the impact of asthma on anxiety and depression, with half of the patients reporting that it affected their self-esteem, while 40% had experienced anxiety, and 28% had been diagnosed with depression. Possibly linked to this, 58% of the adult responders said that their asthma negatively impacted their work life. Ms Winders shared the words of one patient who had stated: “I can’t perform simple tasks in my daily life. It makes me feel disabled”. “Disabled: it’s a very strong word from the mouth of a patient who’s living with ‘just’ asthma, and I use that term in quotes because I think we’ve oversimplified the disease for far too long and these data certainly reveal so many millions of patients still fighting for breath,” commented Ms Winders.
Another important piece of information from the study was that many of the patients analysed were not being treated adequately; it was revealed that just one in five patients use quick-relief inhalers as their only medication. Ms Winders suggested that this factor could help explain why the risk of death from asthma is the same across all severities of the disease.
Reasons for Optimism
There are, however, reasons for optimism that outcomes for asthma patients will improve in the future. One of these, according to Ms Winders, stems from the greater understanding of the condition that has been displayed in recent times. “I think for one thing, over the last 15–20 years, unfortunately we have treated asthma as a single disease, rather than as a spectrum of disease,” she commented. “We thought that asthma was just asthma and, in some ways, it’s lacked the respect or the appreciation for the intricacies or nuances of each individual type of asthma. So, I think that at this congress and at others over the most recent 3–5 years, we’ve learned that there are different phenotypes of asthma, and we are getting much better at diagnosing these types of asthma and treating those various types of asthma. But I don’t think that the impact on daily living and the access to those treatments has resulted in survey results, as demonstrated here from this 2016 data. I think that we still have 3–5 years to see the impact of some of those novel, innovative treatments on actual patient outcomes.”
What Needs to Change
According to Ms Winders, improved interactions between patients and doctors, coupled with greater education of the patients about their condition, enabling better self-management, is essential. “Healthcare providers play a vital role in the multidisciplinary healthcare team. It’s essential that they help patients better manage asthma. A personalised asthma action plan is only one step for that patient to begin to understand what the daily requirements are to living life fully without limitations due to asthma. However, we must teach patients to avoid or reduce asthma triggers and understand when their symptoms are worsening. We must address the underlying inflammatory process that’s happening in the airways, and we should help patients to understand that uncontrolled asthma is not okay. They should expect more. They should stand up, have active conversations with their provider, and certainly explain what’s going on in their day-to-day life in the way the disease is impacting them,” she urged.
Linked to this is an onus on doctors to ask the patients about their priorities regarding asthma treatment, and what impacts on them the most. Ms Winders believes simple tweaks to the usual questions asked in the clinic could make a significant difference in getting a more well-rounded understanding of patient needs. “I often say to doctors who tell me ‘I don’t have time to do comprehensive asthma management in clinic’: if you have time to walk in and ask how’s your asthma? you have time to have a better conversation,” said Ms Winders. “And that could simply begin by having a shared decision-making conversation around what matters most to you in managing your asthma. So rather than ‘how’s your asthma?’, ‘what matters most to you?’: if that was the question, it would change the dialogue and the conversation dramatically. Or, ‘what’s your biggest challenge in managing your asthma?’ These two questions alone would change the dialogue significantly.”
Opportunities for the Future
Despite the somewhat alarming statistics that were highlighted in the analysis, Ms Winders believes they should serve as a wake-up call, and provide an opportunity to better shape patient care in the future. “On the one hand, it could feel almost defeating or disappointing that here we sit, 17 years later, with the same limitations and the same challenges facing so many patients. And yet I see this as a continued opportunity; a continued opportunity to bridge the gap between what should happen according to guidelines and global guidelines in treating asthma versus what’s happening today, and it is also an encouragement that we empower patients and equip healthcare professionals to have more productive dialogues; more honest, candid conversations that are addressing the softer side of the chronic disease that we call asthma,” she stated.