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

Abstract

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.

An international survey on clinicians' perspectives on the diagnosis and management of chronic intestinal pseudo‐obstruction and enteric dysmotility

“…This is clearly important as diagnostic delays and lack of knowledge may explain the high incidence of inappropriate surgical interventions that have not only been identified in this survey, but also in several clinical studies 12,14,27 . Delayed diagnosis may also significantly impact the patients' psychological well‐being 28 and have been shown in other functional gastrointestinal disorders to be associated with stigmatization 29 . Therefore, there is a clear need to raise awareness of CIPO and ED with appropriate educational strategies among the wider clinical community including gastroenterologists and associated specialists such as surgeons and dieticians in order to prevent diagnostic delays, potentially hazardous surgical interventions, and improve clinical outcomes.…”

“…Notably, respondents highlighted the importance of the multidisciplinary care including clinical psychology. Since no single treatment was reported to be highly efficacious, it is vital that care is holistic and that the psychological impact of a dysmotility diagnosis is not neglected 28 …”

“…This is clearly important as diagnostic delays and lack of knowledge may explain the high incidence of inappropriate surgical interventions that have not only been identified in this survey, but also in several clinical studies. 12,14,27 Delayed diagnosis may also significantly impact the patients' psychological well-being 28 In addition to difficulty with diagnosis, respondents also further highlighted the lack of efficacy of many of the established therapies for CIPO and ED. Strategies which ranked best included treatment of bacterial overgrowth, clinical psychology, the pan-enteric prokinetic prucalopride, PN, and neuropathic analgesia.…”

“…Since no single treatment was reported to be highly efficacious, it is vital that care is holistic and that the psychological impact of a dysmotility diagnosis is not neglected. 28 Unfortunately, due to the nature of this study, there was a need to consider maximizing response rates among potential participants.…”

Poor Social Support and Unemployment Are Associated With Negative Affect in Home Parenteral Nutrition–Dependent Patients With Chronic Intestinal Failure

“…Patients are required to develop the knowledge and skills to cope with the demands of using complex medical equipment, observing strict hygiene procedures to minimize the risk for catheter complications, adherence to feeding schedules, and often restrictions of food and drink intake . Patients often experience significant psychosocial strains due to the associated lifestyle changes, functional limitations, role changes, body image disturbance, isolation, and a sense of loss of control and personal agency . Lifestyle changes include being restricted by the practicalities of PN, waiting in for deliveries, the amount of storage space required in the home, and having to plan travel, work, and social activities around the timings of connection and disconnection to PN .…”