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Mapping the Experiences of People with Achalasia

Achalasia Action

Melika Kalantari MPharm(Hons) MSc from the University of Reading has conducted some original research amongst members of Achalasia Action that was published in November 2020.

Read the full research article here



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.


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.


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.


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.

Achalasia Action comment

She points out that the onset of achalasia symptoms can typically be insidious over a number of years, that there are often delays in diagnosis and that behavioural and lifestyle adjustments are required for this chronic condition. Three quotations from the published paper give a flavour of this research:

‘According to a study carried out by Clark et al, three separate categories of activities need to be addressed in order to successfully self-manage a chronic condition. First, people with chronic conditions need to have an adequate knowledge about their condition and its treatment to make informed decisions. Second, they need to perform activities in order to manage their condition by making changes to their lifestyle, including changing their dietary habits. Third, they need to apply skills to maintain adequate psychosocial functioning, which includes working, maintaining a good family life and cultivating social relationships. These self-management activities aim to reduce the impact of chronic conditions on daily life.’

‘There is no one way to manage the symptoms of achalasia; therefore, people living with this condition need to manage their symptoms by trying different self-management strategies through trial and error.’

‘The study highlighted the issues people faced at each stage in their journey and identified the areas that need addressing to help people cope with their condition, including interventions to improve patient care. The process map also highlighted the importance of self-management of chronic conditions. People who participated in this study may have undergone different medical treatments, but all of them were still experiencing symptoms that required them to adopt different self-management strategies to carry out their normal lives.’

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Medical Treatment of Spasms

Achalasia Action are keen to support a project looking at how we can treat spasms/ chest pains as this has been one of the most recurrent themes raised


I-PASS study

This study (International – Patient reported outcome of Achalasia Symptom Score) is being run by Professor Giovanni Zaninotto from Imperial College and Assistant Professor Sheraz Markar.