Mapping the experiences of people with achalasia from initial symptoms to long‐term management

Abstract

Background Achalasia is a rare motility disorder affecting the oesophagus, which is associated with a range of symptoms and different treatment strategies. Currently, little is known about people's experiences with achalasia and its management. This study aimed to understand the experiences of people living with achalasia, from the initial onset of symptoms to long‐term management. Method This qualitative study explored the journey of people living with achalasia and outlined the care pathway using a process map. Ten female and five male participants living with achalasia (age range: 40‐73) took part, and all aspects of their diagnosis, treatment and management were discussed. A process map showing people's experiences by separating the management of their condition into a series of steps was developed to present the pathway in the participants’ journey. The analysis involved discussing the process map within the research team. Results The process map comprised of 10 steps, which occurred before and after diagnosis. The developed map indicates that most participants managed their on‐going symptoms through stress management techniques and dietary changes. Key issues that participants highlighted about their journey managing achalasia were misdiagnosis, delay in diagnosis and lack of support in the long‐term management of achalasia. Conclusions This research was a novel study exploring patients’ experiences and management of achalasia and mapping their journey. Two distinct phases to their journeys were identified: before and after diagnosis. Areas highlighted by this study can provide a basis for future research, in particular behaviour change to support the long‐term management of achalasia.

Autoimmune and viral risk factors are associated with achalasia: A case‐control study

“…Epidemiologic estimates report an incidence of 2 to 11 per 100,000 and a prevalence of 11 to 162 per 100,000 in the United States, with considerable increases in burden associated with advancing age 4‐6 . Symptoms of achalasia are generally severe and include dysphagia, regurgitation, heartburn, and weight loss, and the condition has been associated with a substantial decrement to health‐related quality of life 7‐9 . In addition to a high symptom burden, current treatments for achalasia (botulinum toxin injection, pneumatic dilation, surgical myotomy, peroral endoscopic myotomy [POEM], and esophagectomy) are invasive and expensive, may result in complications, and often require re‐intervention 10,11 .…”

“…[4][5][6] Symptoms of achalasia are generally severe and include dysphagia, regurgitation, heartburn, and weight loss, and the condition has been associated with a substantial decrement to health-related quality of life. [7][8][9] In addition to a high symptom burden, current…”

Esophageal achalasia, diagnosed through the repeated manometry, alleviated using benzodiazepine: A case report

“…Psychosomatic approaches toward achalasia need to be more focused because anxiety and stress probably delay the recovery of symptoms, and stress might exacerbate or induce achalasia. [ 9 ] Also, social isolation, such as the coronavirus disease-2019 lockdown, affects patients with achalasia. [ 10 ] Very few reports take a psychosomatic approach to achalasia, contrary to its importance.…”

Autoimmune Diseases of the GI Tract Part I: Etiology and Pathophysiology

“…In 2020, Kalantari et al conducted a study that maps the experience of achalasia patients from initial symptoms to management of symptoms. In their findings, they found that people who had achalasia before the diagnosis had anxiety due to the uncertainty about their diagnosis [218]. According to a study from Germany, after the diagnosis of achalasia, patients were more likely to develop depression at significantly higher rates than those without the condition.…”