Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care

Hiremath, Girish; Kodroff, Ellyn; Strobel, Mary Jo; Scott, Melissa; Book, Wendy; Reidy, Cathy; Kyle, Shay; Mack, Denise; Sable, Kathleen; Abonia, Pablo; Spergel, Jonathan; Gupta, Sandeep K.; Furuta, Taiga; Rothenberg, Marc E.; Dellon, Evan S.

doi:10.1016/j.clinre.2018.03.003

Cited by 45 publications

(38 citation statements)

References 20 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Supplying the patient with enough disease‐related information, while keeping patient's health literacy in mind, represents another important step . While Hiremath et al have recently evaluated the unmet needs and barriers to care across medical, healthcare, social and emotional domains in individuals affected by eosinophilic gastrointestinal disorders, the therapy goals of adult EoE patients have never been systematically assessed . Therefore, in this study, we first aimed to provide information about diagnostic procedures, pathogenesis, natural history and treatment options by the means of a patient brochure and then evaluated, which therapy goals adult EoE patients consider relevant.…”

Section: Discussionmentioning

confidence: 99%

“…Patients' ranking the importance of the short-(A) and long-term (B) therapy effects enough disease-related information, while keeping patient's health literacy in mind, represents another important step. 12-14 While Hiremath et al have recently evaluated the unmet needs and barriers to care across medical, healthcare, social and emotional domains in individuals affected by eosinophilic gastrointestinal disorders, the therapy goals of adult EoE patients have never been systematicallyassessed 26. Therefore, in this study, we first aimed to provide infor-Univariate and multivariate logistic regression evaluating factors associated with preference for symptom improvement over biological activity in the next 3 months…”

mentioning

confidence: 99%

See 1 more Smart Citation

Adults with eosinophilic oesophagitis identify symptoms and quality of life as the most important outcomes

Safroneeva

Balsiger

Hafner

et al. 2018

Aliment Pharmacol Ther

View full text Add to dashboard Cite

Summary Background Well informed patients who are in cohesive partnership with physicians and who have realistic expectations towards therapy are more likely to be adherent, which results in better disease control. Aim To assess which therapy goals adults with eosinophilic oesophagitis consider relevant. Methods Following refinement during three focus groups, a study brochure and questionnaire were sent to 148 patients. Patients ranked the importance (five levels) of short‐term (in the next 3 months) and long‐term (≥1 year) treatment effect on symptoms, quality of life (QoL), histologically‐detected inflammation and fibrosis, endoscopically‐detected inflammation, and stricture formation as well as achieving histological remission while asymptomatic. Patients’ characteristics associated with treatment goals were identified using logistic regression. Results Of 109 respondents (mean age 43 years), 85 were men. Over 90% chose symptoms and QoL improvement as important short‐ and long‐term therapy goals. A greater proportion attributed more importance to long‐term reduction in endoscopic (90% vs 73%, P < 0.001) and histological (81% vs 62%, P = 0.002) inflammation, and histologically‐detected fibrosis (79% vs 64%, P = 0.018) when compared to short‐term reduction in these features. Patients (88%) ranked achieving histological remission while being asymptomatic as important. Gender, therapy use, education level, QoL, symptom severity, and history of dilation were associated with patients’ choice of treatment goals. Conclusions Patients attributed most importance to improvement in symptoms and QoL. Reduction in biological activity was judged less important, but more relevant in the long‐ compared to the short‐term.

show abstract

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

Adults with eosinophilic oesophagitis identify symptoms and quality of life as the most important outcomes

Safroneeva

Balsiger

Hafner

et al. 2018

Aliment Pharmacol Ther

View full text Add to dashboard Cite

show abstract

“…Currently, the unpredictability of EoE therapy response and disease progression necessitates physicians to find the best treatment strategy for each patient using a trial and error approach monitored by gold standard diagnosis which significantly affects the quality of life of the EoE patients ( 42 ). For this purpose, EoE algorithms and their future expansions with secondary diagnostic loops appear as attractive strategies because they will permit the prediction of the development of symptoms and treatment responsiveness and can, thus, help inform the diagnosis and treatment of EoE reducing the time between initial presentation and effective treatment.…”

Section: Discussionmentioning

confidence: 99%

A Distinct Esophageal mRNA Pattern Identifies Eosinophilic Esophagitis Patients With Food Impactions

et al. 2018

View full text Add to dashboard Cite

Eosinophilic esophagitis (EoE), a Th2-type allergic immune disorder characterized by an eosinophil-rich esophageal immune infiltrate, is often associated with food impaction (FI) in pediatric patients but the molecular mechanisms underlying the development of this complication are not well understood. We aim to identify molecular pathways involved in the development of FI. Due to large variations in disease presentation, our analysis was further geared to find markers capable of distinguishing EoE patients that are prone to develop food impactions and thus expand an established medical algorithm for EoE by developing a secondary analysis that allows for the identification of patients with food impactions as a distinct patient population. To this end, mRNA patterns from esophageal biopsies of pediatric EoE patients presenting with and without food impactions were compared and machine learning techniques were employed to establish a diagnostic probability score to identify patients with food impactions (EoE+FI). Our analysis showed that EoE patients with food impaction were indistinguishable from other EoE patients based on their tissue eosinophil count, serum IgE levels, or the mRNA transcriptome-based p(EoE). Irrespectively, an additional analysis loop of the medical algorithm was able to separate EoE+FI patients and a composite FI-score was established that identified such patients with a sensitivity of 93% and a specificity of 100%. The esophageal mRNA pattern of EoE+FI patients was typified by lower expression levels of mast cell markers and Th2 associated transcripts, such as FCERIB, CPA3, CCL2, IL4, and IL5. Furthermore, lower expression levels of regulators of esophageal motility (NOS2 and HIF1A) were detected in EoE+FI. The EoE+FI -specific mRNA pattern indicates that impaired motility may be one underlying factor for the development of food impactions in pediatric patients. The availability of improved diagnostic tools such as a medical algorithm for EoE subpopulations will have a direct impact on clinical practice because such strategies can identify molecular inflammatory characteristics of individual EoE patients, which, in turn, will facilitate the development of individualized therapeutic approaches that target the relevant pathways affected in each patient.

show abstract

“…The professionals who care for me are concerned with my quality of life and I fee committed to improving my wellbeing. 6. We agree on the most important objectives to a better manage of my disease.…”

Section: Appendixmentioning

confidence: 83%

Results of a PREM to measure the rare disease patients’ caregivers experience: A Spanish cross-sectional study

Martínez-García

Sala-González

et al. 2020

Preprint

View full text Add to dashboard Cite

Objective To measure the experience of the person suffering from a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience).Results A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2-3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services.Conclusions There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

show abstract

Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care

Cited by 45 publications

References 20 publications

Adults with eosinophilic oesophagitis identify symptoms and quality of life as the most important outcomes

Adults with eosinophilic oesophagitis identify symptoms and quality of life as the most important outcomes

A Distinct Esophageal mRNA Pattern Identifies Eosinophilic Esophagitis Patients With Food Impactions

Results of a PREM to measure the rare disease patients’ caregivers experience: A Spanish cross-sectional study

Contact Info

Product

Resources

About