ArticleHealth expectations : an international journal of public participation in health care and health policy2021
Mapping the experiences of people with achalasia from initial symptoms to long-term management.
Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 16 citations in OpenAlex.
- Medical management of painful achalasia: a patient-driven systematic review.Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus · 2024Pooled it
- Impact of educational pamphlet in achalasia care: education as therapy among Pakistani patients.Esophagus : official journal of the Japan Esophageal Society · 2026Article
- Endoscopic Prediction of Achalasia: Putting the CART Before the CARS.Neurogastroenterology and motility · 2025Article
- A co-designed intervention to support people living with achalasia to eat in a social setting: a feasibility study.Pilot and feasibility studies · 2024Article
- Co-designing an intervention using the COM-B model to change an eating behaviour in people living with achalasia.Frontiers in medicine · 2024Article
- Characteristics of achalasia and detection of pulmonary complications: A comparison of findings in younger and elderly patients.Qatar medical journal · 2024Article
- Reporting and conducting patient journey mapping research in healthcare: A scoping review.Journal of advanced nursing · 2023Article
- Autoimmune and viral risk factors are associated with achalasia: A case-control study.Neurogastroenterology and motility · 2022Article
- Mapping the experiences of people with achalasia from initial symptoms to long-term management.Health expectations : an international journal of public participation in health care and health policy · 2021Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAchalasia 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.
methodThis 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.
resultsThe 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.
conclusionsThis 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.
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