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Adults with hypersensitivity pneumonitis (HP) expressed interest in more knowledge of prognosis, etiology, treatment, and living well with the disease, based on new survey data presented at the American Thoracic Society International Conference.
HP is caused by environmental exposure and is often incurable, and patients are challenged with identifying and mitigating the exposure with limited guidance, wrote Janani Varadarajan, MD, of Weill Cornell Medicine, New York, and colleagues.
Surveys Conducted to Understand Patient Concerns
To better identify patient-perceived HP knowledge gaps and develop educational resources, the researchers assessed 21 adults diagnosed with HP. Patients underwent interviews using nominal group technique (NGT) for group consensus and completed a survey on educational preferences. The mean age of the participants was 69.5 years, and 81% were women.
The researchers conducted five NGTs. Participants were asked two questions: What questions about your HP do you have that keep you awake at night?” and “What information do you want about your HP that you cannot find?” They also voted on responses that were grouped by theme.
The top themes that emerged from the interviews were concerns about natural history and prognosis of HP (28.3%), current treatment options and therapeutic research (22.5%), epidemiology and etiology (17.5%), living well with HP (15.4%), origin and management of symptoms (8.3%), identifying and mitigating exposures (4.6%), and methods of information uptake and dissemination (3.3%).
The findings were limited by the relatively small sample size. However, the results will inform the development of educational materials on the virtual Patient Activated Learning System, the researchers noted in their abstract. “This curriculum will be a component of a larger support intervention that aims to improve patient knowledge, self-efficacy, and HRQOL [health-related quality of life],” they said.
Findings Will Fuel Needed Education
Recognizing more interstitial lung disease (ILD) has led to diagnosing more hypersensitivity pneumonitis, and it is important to keep patients’ concerns in mind, said Aamir Ajmeri, MD, assistant professor of clinical thoracic medicine and surgery at the Lewis Katz School of Medicine at Temple University, Philadelphia, in an interview.
“If patients research ILD online, most of the literature is based on idiopathic pulmonary fibrosis,” he said. “IPF literature can be frightening because patients will see a median 2- to 5-year survival rate from time of diagnosis, the need for lung transplant, and progressive hypoxemia; however, all of this may not be true in HP,” he noted.
“HP is more of a spectrum, but it is more difficult for patient to understand when we say ‘your lungs have reacted to something in your environment,’ and they will ask ‘what can I do to change this?’” Dr. Ajmeri told this news organization. “That is why these types of studies, where we recognize what patients need and how they can learn more about their diagnosis, are very important,” he said.
The study findings were not surprising, Dr. Ajmeri said. “We have a large cohort of patients with HP at Temple Health, and these are the same questions they ask me and my colleagues,” he said. “It can be tough for patients to grasp this diagnosis. We know it is related to something inhaled from the environment, but it may be difficult to pinpoint,” he said.
In patient-centered research, patients can help shed light onto the needs that are unmet for the disease process by asking hypothesis-generating questions, Dr. Ajmeri said. For example, he said he is frequently asked by patients why HP continues to recur after they have remediated a home (potential source of exposure) and been on medication.
“The study was limited in part by the small sample size but captured a good representation of what patients are asking their physicians about,” Dr. Ajmeri said. Although it is always preferable to have more patients, the findings are important, “and the educational materials that they will lead to are greatly needed,” he said.
The study was supported by the Stony Wold-Herbert Fund, the American Lung Association Catalyst Award, and the National Heart, Lung, and Blood Institute. The researchers had no financial conflicts to disclose. Dr. Ajmeri had no financial conflicts to disclose.
A version of this article appeared on Medscape.com.
Adults with hypersensitivity pneumonitis (HP) expressed interest in more knowledge of prognosis, etiology, treatment, and living well with the disease, based on new survey data presented at the American Thoracic Society International Conference.
HP is caused by environmental exposure and is often incurable, and patients are challenged with identifying and mitigating the exposure with limited guidance, wrote Janani Varadarajan, MD, of Weill Cornell Medicine, New York, and colleagues.
Surveys Conducted to Understand Patient Concerns
To better identify patient-perceived HP knowledge gaps and develop educational resources, the researchers assessed 21 adults diagnosed with HP. Patients underwent interviews using nominal group technique (NGT) for group consensus and completed a survey on educational preferences. The mean age of the participants was 69.5 years, and 81% were women.
The researchers conducted five NGTs. Participants were asked two questions: What questions about your HP do you have that keep you awake at night?” and “What information do you want about your HP that you cannot find?” They also voted on responses that were grouped by theme.
The top themes that emerged from the interviews were concerns about natural history and prognosis of HP (28.3%), current treatment options and therapeutic research (22.5%), epidemiology and etiology (17.5%), living well with HP (15.4%), origin and management of symptoms (8.3%), identifying and mitigating exposures (4.6%), and methods of information uptake and dissemination (3.3%).
The findings were limited by the relatively small sample size. However, the results will inform the development of educational materials on the virtual Patient Activated Learning System, the researchers noted in their abstract. “This curriculum will be a component of a larger support intervention that aims to improve patient knowledge, self-efficacy, and HRQOL [health-related quality of life],” they said.
Findings Will Fuel Needed Education
Recognizing more interstitial lung disease (ILD) has led to diagnosing more hypersensitivity pneumonitis, and it is important to keep patients’ concerns in mind, said Aamir Ajmeri, MD, assistant professor of clinical thoracic medicine and surgery at the Lewis Katz School of Medicine at Temple University, Philadelphia, in an interview.
“If patients research ILD online, most of the literature is based on idiopathic pulmonary fibrosis,” he said. “IPF literature can be frightening because patients will see a median 2- to 5-year survival rate from time of diagnosis, the need for lung transplant, and progressive hypoxemia; however, all of this may not be true in HP,” he noted.
“HP is more of a spectrum, but it is more difficult for patient to understand when we say ‘your lungs have reacted to something in your environment,’ and they will ask ‘what can I do to change this?’” Dr. Ajmeri told this news organization. “That is why these types of studies, where we recognize what patients need and how they can learn more about their diagnosis, are very important,” he said.
The study findings were not surprising, Dr. Ajmeri said. “We have a large cohort of patients with HP at Temple Health, and these are the same questions they ask me and my colleagues,” he said. “It can be tough for patients to grasp this diagnosis. We know it is related to something inhaled from the environment, but it may be difficult to pinpoint,” he said.
In patient-centered research, patients can help shed light onto the needs that are unmet for the disease process by asking hypothesis-generating questions, Dr. Ajmeri said. For example, he said he is frequently asked by patients why HP continues to recur after they have remediated a home (potential source of exposure) and been on medication.
“The study was limited in part by the small sample size but captured a good representation of what patients are asking their physicians about,” Dr. Ajmeri said. Although it is always preferable to have more patients, the findings are important, “and the educational materials that they will lead to are greatly needed,” he said.
The study was supported by the Stony Wold-Herbert Fund, the American Lung Association Catalyst Award, and the National Heart, Lung, and Blood Institute. The researchers had no financial conflicts to disclose. Dr. Ajmeri had no financial conflicts to disclose.
A version of this article appeared on Medscape.com.
Adults with hypersensitivity pneumonitis (HP) expressed interest in more knowledge of prognosis, etiology, treatment, and living well with the disease, based on new survey data presented at the American Thoracic Society International Conference.
HP is caused by environmental exposure and is often incurable, and patients are challenged with identifying and mitigating the exposure with limited guidance, wrote Janani Varadarajan, MD, of Weill Cornell Medicine, New York, and colleagues.
Surveys Conducted to Understand Patient Concerns
To better identify patient-perceived HP knowledge gaps and develop educational resources, the researchers assessed 21 adults diagnosed with HP. Patients underwent interviews using nominal group technique (NGT) for group consensus and completed a survey on educational preferences. The mean age of the participants was 69.5 years, and 81% were women.
The researchers conducted five NGTs. Participants were asked two questions: What questions about your HP do you have that keep you awake at night?” and “What information do you want about your HP that you cannot find?” They also voted on responses that were grouped by theme.
The top themes that emerged from the interviews were concerns about natural history and prognosis of HP (28.3%), current treatment options and therapeutic research (22.5%), epidemiology and etiology (17.5%), living well with HP (15.4%), origin and management of symptoms (8.3%), identifying and mitigating exposures (4.6%), and methods of information uptake and dissemination (3.3%).
The findings were limited by the relatively small sample size. However, the results will inform the development of educational materials on the virtual Patient Activated Learning System, the researchers noted in their abstract. “This curriculum will be a component of a larger support intervention that aims to improve patient knowledge, self-efficacy, and HRQOL [health-related quality of life],” they said.
Findings Will Fuel Needed Education
Recognizing more interstitial lung disease (ILD) has led to diagnosing more hypersensitivity pneumonitis, and it is important to keep patients’ concerns in mind, said Aamir Ajmeri, MD, assistant professor of clinical thoracic medicine and surgery at the Lewis Katz School of Medicine at Temple University, Philadelphia, in an interview.
“If patients research ILD online, most of the literature is based on idiopathic pulmonary fibrosis,” he said. “IPF literature can be frightening because patients will see a median 2- to 5-year survival rate from time of diagnosis, the need for lung transplant, and progressive hypoxemia; however, all of this may not be true in HP,” he noted.
“HP is more of a spectrum, but it is more difficult for patient to understand when we say ‘your lungs have reacted to something in your environment,’ and they will ask ‘what can I do to change this?’” Dr. Ajmeri told this news organization. “That is why these types of studies, where we recognize what patients need and how they can learn more about their diagnosis, are very important,” he said.
The study findings were not surprising, Dr. Ajmeri said. “We have a large cohort of patients with HP at Temple Health, and these are the same questions they ask me and my colleagues,” he said. “It can be tough for patients to grasp this diagnosis. We know it is related to something inhaled from the environment, but it may be difficult to pinpoint,” he said.
In patient-centered research, patients can help shed light onto the needs that are unmet for the disease process by asking hypothesis-generating questions, Dr. Ajmeri said. For example, he said he is frequently asked by patients why HP continues to recur after they have remediated a home (potential source of exposure) and been on medication.
“The study was limited in part by the small sample size but captured a good representation of what patients are asking their physicians about,” Dr. Ajmeri said. Although it is always preferable to have more patients, the findings are important, “and the educational materials that they will lead to are greatly needed,” he said.
The study was supported by the Stony Wold-Herbert Fund, the American Lung Association Catalyst Award, and the National Heart, Lung, and Blood Institute. The researchers had no financial conflicts to disclose. Dr. Ajmeri had no financial conflicts to disclose.
A version of this article appeared on Medscape.com.