Gastrointestinal Dysmotility: A qualitative exploration of the journey from symptom onset to diagnosis

Purpose: Gastrointestinal dysmotility (GID) covers a spectrum of disorders disrupting enteric neuromuscular co-ordination which, when severe, causes intractable gastrointestinal symptoms, malnutrition and is a recognised cause of chronic intestinal failure. To date, no study has provided an in-depth account of the experiences of patients with severe GID and their psychosocial needs. This study aimed to explore patients’ experiences from symptom onset and the process of seeking and receiving a diagnosis. It specifically explored the psychological effect of this process and the effect on relationships.

Methods: Participants (n=20, mean age=47.9, female n=16, parenteral nutrition=13) were recruited from a UK centre with tertiary Neurogastroenterology and Intestinal Failure services. A qualitative exploratory design with semi-structured in-depth interviews was used. Data was analysed using thematic analysis.

Results: Significant delays were experienced in obtaining a diagnosis. Participants reported having their mental health questioned and felt they had to fight to prove their symptoms had a physical basis to access appropriate treatment. Although a diagnosis helped legitimise symptoms, the condition remained poorly understood by participants themselves, relatives, and health professionals. Participants discussed the impact that ‘feeling delegitimised’ and the ‘lack of coherent understanding of GID’ had on their relationships and mental health.

Conclusions: The distressing experience of GID symptoms are compounded by a delay in validating symptoms and lack of coherent understanding. More knowledge of GID is needed by health professionals to speed up diagnosis and offer more coherent information. The psychological impact of a GID diagnosis should be acknowledged early to help facilitate adjustment.