There is little data on the burden of disease on social and personal life of individuals with neurogenic bowel dysfunction (NBD) (1). The impact of the disease is more commonly described for hospital-based cohorts. The intention of this work is to address this deficit (2). The aim of the work is to describe and gain a wider insight on individual patient's experiences, describe the impact of bowel symptoms on social life and understand what self-help treatments patients initiate and what drives their health-seeking behaviour.

Neurogenic bowel dysfunction (NBD) is one of the most intrusive challenges that individuals with neurological diseases face. Multiple sclerosis (MS), spinal cord injury (SCI) and spina bifida (SB) are neurological conditions of the central nervous system. The aetiopathogenesis and progression vary according to the underlying disease, but the prevalence of bowel dysfunction is high in all those conditions. Bowel function is multifactorial; it involves the awareness and acceptability of the social environment regulated by a central cortex component, sensory signals from the bowel regulated by peripheric components, and also generalised systemic factors. A stepped programme of treatment, like behavioural interventions, use of suppositories, laxatives, constipating agents and when those are not successful or effective transanal irrigation (TAI) has been available (3). Medical treatments have evolved in recent years allowing better control of disease progression, but more data on evidence-based decision-making strategies are needed to choose the optimal pathway for different individuals.

Qualitative data were obtained from a large international survey of individuals troubled by bowel symptoms based in a community setting. It involves the self-reported information of 187 survey participants who had NBD, comprising 74 with SCI, 27 with SB and 86 with MS from 4 different countries (92 United Kingdom, 80 United States, 72 France and 72 Denmark). A human science-based strategy consultancy designed and completed the commissioned survey. Questions were grouped in six main categories:
general information, bowel management history, reaching good bowel care, bowel management over time, reaching transanal irrigation, and perception of treatment explored. Informed consent was provided by the participants and all answers were anonymous. Survey participants' answers were transferred to an excel spreadsheet and reviewed by the authors. Our descriptive analysis was independent and focused on the most generalisable data on the lived experience of participants. Our intention was not to compare the three cohorts of participants' symptoms. We excluded questions where the answers could be particularly influenced by the stage of the disease.

We have described that bowel symptoms affect quality of life in several domains of personal and professional functioning. The negative impact of bowel symptoms in social engagement was reported by half of the 187 survey participants with NBD. School and work attendance was considered influenced negatively by the participants. Healthcare professionals are typically not the first point of contact for such patients. Before referral to a specialist, patients reported many 4-5 visits to the general practitioner. The involvement of several healthcare professionals was also described. Individuals who completed the survey often explore self-help approaches available in community including over the counter medications, “natural remedies” and dietary change. Faecal incontinence and time spent on toileting emerge as a significant driver of consultation for many survey participants. In addition, urgency and unpredictability of bowel function is a problem for many individuals. Survey participants feels that there are many symptoms associated with bowel symptoms like urinary incontinence and frequent urinary infection, but also anxiety, depression and sleep disturbance.

The sample was not recruited from a healthcare setting, rather reflected an community-based group of individuals. This real-life data can be considered complementary to the typically described cohorts of inpatients. Considering new medication, the symptoms management is assuming a key role in the coming years has profoundly impact in patients’ quality of life.

Since long-term self-management is critical to management, addressing patients' beliefs and what therapies they have explored is important in defining bowel management options and tailoring treatments. NBD symptoms are believed by patients to extend beyond the gut to involve urinary and mental health domains. As suggested in other qualitative studies the aim of healthcare professionals involved in this area should be to establish a therapeutic relationship with patients to meet their individual needs. Addressing health beliefs and education needs while empowering the patients in their active role in bowel care should be considered part of standard bowel care.

Glickman SK, M. A.; . Bowel dysfunction in spinal-cord-injury patients Lancet. 1996;347:1651-1653.
Bochkezanian V & Anderson KD. Comprehensive and person-centred approach in research: what is missing? The international. Spinal Cord. 2022; 60:187-189
Nafees B, Lloyd AJ, Ballinger RS, Emmanuel A. Managing neurogenic bowel dysfunction: what do patients prefer? A discrete choice experiment of patient preferences for transanal irrigation and standard bowel management. Patient Prefer Adherence. 2016;10:195-204

Continence 7S1 (2023) 100901
DOI: 10.1016/j.cont.2023.100901