BackgroundIdiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients’ individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF.MethodsWe conducted two hour-long focus groups with 13 patients with IPF and 4 caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered.ResultsPatients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF, practical information on how they could remain active and travel and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the healthcare team involved in their care. They considered both spoken and written information valuable, and ease of access was critical.ConclusionThis study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers.

OBJECTIVES: The prevalence of psychiatric disease in patients with eosinophilic esophagitis (EoE) is not fully characterized. We aimed to determine the prevalence of psychiatric disease and centrally acting medication use in a cohort of children and adults with EoE and evaluated whether psychiatric disease affects the EoE clinical presentation. METHODS: We conducted a retrospective study of newly diagnosed cases with EoE at the University of North Carolina from 2002 to 2018. Psychiatric comorbidities and relevant treatments were extracted from the medical records. The demographic and clinical features of patients with EoE with and without psychiatric diagnoses, and those with and without psychiatric medication use, were compared. RESULTS: Of 883 patients (mean age 26.6 years, 68% men, 79% white), 241 (28%) had a psychiatric comorbidity. The most common diagnosis was anxiety (23%) followed by depression (17%); 28% of patients were treated pharmacologically. There were 45 patients (5%) treated pharmacologically without a psychiatric diagnosis for chronic pain syndromes, insomnia, and/or epilepsy. Cases with EoE with a psychiatric diagnosis were more likely to be women, white, and 18 years or older and to have a longer symptom duration before diagnosis. DICUSSION: Psychiatric comorbidities were common in EoE, seen in a third of adults and more than 1 in 7 children, and with similar proportions receiving a prescription medication. These illnesses affected the EoE presentation because psychiatric comorbidities were more likely in older, female, and white patients with a longer duration of symptoms preceding diagnosis.

Idiopathic pulmonary fibrosis (IPF) is a progressive disease associated with poor quality of life. Debilitating symptoms and the reality of shortened survival impact patients’ physical and emotional well-being and constrain the lives of patients’ caregivers. This study assessed the informational needs of medical providers who care for patients with IPF, IPF patients themselves, and their caregivers. Tailored surveys were sent electronically to providers, patients with IPF, and caregivers of patients with IPF collected on a rolling basis in March of 2017. Providers answered questions regarding their own informational needs and what information they believed patients needed. Patients and caregivers identified their own informational needs and the perceived needs for each other. About 2636 surveys were sent to providers, including 2041 to physicians, of whom 156 completed it. One hundred sixty patients and 29 caregivers responded to the survey via a link on a website. Eighty-six percent of providers described themselves as physicians who diagnose and treat IPF patients themselves. Providers ranked information on “making the diagnosis of IPF” as their top informational need. Patients and caregivers chose “disease progression/what to expect” as the most important informational need for themselves and for each other. Providers want to make a correct diagnosis when IPF is in the differential diagnosis. Patients and caregivers desire clarity around how IPF will behave over time and what their futures with IPF will look like. Resources for patients and their caregivers should include information on disease natural history in empathically worded, clear, and easily accessible formats.

Background and Aims: A proportion of patients with active eosinophilic esophagitis (EoE) have a normal appearing esophagus on endoscopy (EGD). We aimed to determine associations between baseline clinical features and the endoscopically normal esophagus in EoE as well as time trends in reporting. Methods: In this retrospective study of active EoE cases from 2002-2018, patients with and without esophageal endoscopic abnormalities were compared. Multivariable logistic regression identified independent predictors of a normal EGD. The proportion of patients with a normal EGD was determined per year and before and after introduction of the first EoE guidelines and EoE Endoscopic Reference Score (EREFS). Results: Of 878 EoE patients, 101 (11.5%) had an endoscopically normal esophagus. They were younger (8.3 vs. 25.4 years), had shorter symptom duration before diagnosis (median 2.8 vs. 5.0 yrs), less likely to have dysphagia (40% vs. 76%) and food impaction (8% vs. 33%), and more likely to have abdominal pain (37% vs. 19%) (p<0.01 for all). On multivariable logistic regression, independent predictors of a normal esophagus were younger age (OR=0.96, 95% CI:0.94-0.98), abdominal pain (OR=2.03, 1.13-3.67), and lack of dysphagia (OR=0.49, 0.26-0.93). The proportion of patients with a normal esophagus decreased from 21% before the first EoE guidelines to 7% (p<0.01) after introduction of EREFS. Conclusions: An endoscopically normal esophagus is seen in ~10% of active EoE patients and should not preclude biopsies. Younger age, abdominal pain, and lack of dysphagia are independent predictors. The proportion of normal EGDs decreased over time, suggesting improved recognition of endoscopic findings.

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