Understanding the patient perspective for treatment outcomes and preferences in functional bowel disorders

Functional bowel disorders, including irritable bowel syndrome (IBS), constipation and fecal incontinence, are very common in the population. Due to recurrent and persistent abdominal pain and/or stool problems, these patients have a lower quality of life and a high consumption rate of healthcare. Multiple effective treatments are available for these conditions. Nevertheless, as no single treatment works for all patients and symptoms differ per patient, the search for a suitable treatment remains a challenge. This thesis therefore examined the treatment preferences in IBS patients. These studies showed that patients preferred dietary intervention, subsequently medication and psychological treatment. In addition, the long-term outcomes of various surgical procedures for constipation and fecal incontinence were examined, when treatment with medication is no longer effective. The results of the Malone stoma (artificial access to the large intestines) and the artificial bowel sphincter were disappointing because of little effect on the complaints and the presence of many complications. Sacral neuromodulation did show promising results. Shared decision-making is therefore important when choosing a treatment, whereby the wishes and expectations of patients with functional abdominal complaints should be thoroughly discussed

Do Patients' and Physicians' Perspectives Differ on Preferences for Irritable Bowel Syndrome Treatment?

Irritable bowel syndrome (IBS) is a highly prevalent disorder of gut-brain interaction and poses a significant burden to patients. Pharmacotherapy, diet, and psychotherapy all have largely comparable clinical efficacy. Therefore, factors outside efficacy can have an important impact in determining preferences for a specific therapeutic entity. The aim of this study was to compare the patient and physician perspectives and identify important treatment characteristics regarding the management of IBS. Semistructured interviews were performed among IBS patients (n = 8), fulfilling the Rome IV criteria, and surveys were sent to physicians involved in IBS care (n = 15). Nine important treatment characteristics were revealed: effectiveness, time until response, cessation of response, side effects, location, waiting period, treatment burden, frequency of healthcare appointments, and willingness to pay. Time to response, location, and waiting time were less important for patients compared to physicians. This study assessed important IBS treatment characteristics and provided context to preferences from a patient and physician perspective. These data could be relevant during shared decision-making in clinical practice

Do Patients’ and Physicians’ Perspectives Differ on Preferences for Irritable Bowel Syndrome Treatment?

Irritable bowel syndrome (IBS) is a highly prevalent disorder of gut–brain interaction and poses a significant burden to patients. Pharmacotherapy, diet, and psychotherapy all have largely comparable clinical efficacy. Therefore, factors outside efficacy can have an important impact in determining preferences for a specific therapeutic entity. The aim of this study was to compare the patient and physician perspectives and identify important treatment characteristics regarding the management of IBS. Semistructured interviews were performed among IBS patients (n = 8), fulfilling the Rome IV criteria, and surveys were sent to physicians involved in IBS care (n = 15). Nine important treatment characteristics were revealed: effectiveness, time until response, cessation of response, side effects, location, waiting period, treatment burden, frequency of healthcare appointments, and willingness to pay. Time to response, location, and waiting time were less important for patients compared to physicians. This study assessed important IBS treatment characteristics and provided context to preferences from a patient and physician perspective. These data could be relevant during shared decision-making in clinical practice

Sacral neuromodulation in children and adolescents with chronic constipation refractory to conservative treatment

Functional constipation in children and adolescents is a common and invalidating condition. In a minority of patients, symptoms persist despite optimal conservative therapy. The aim of this study was to evaluate whether the short-term effects of sacral neuromodulation (SNM) in children and adolescents with constipation are sustained over prolonged period of time. Patients aged 10-20 years, with refractory constipation, fulfilling the Rome III criteria, were included in our study. If SNM test treatment showed >50 % improvement in defecation frequency, a permanent stimulator was implanted. Primary outcome measure was defecation frequency during 3 weeks. Secondary endpoints were abdominal pain and Wexner score. To assess sustainability of treatment effect, a survival analysis was performed. Cross-sectional quality of life was assessed using the EQ-5D VAS score. Thirty girls, mean age 16 (range 10-20), were included. The mean defecation frequency increased from 5.9 (SD 6.5) in 21 days at baseline to 17.4 (SD 11.6) after 3 weeks of test treatment (p  < 0.001). During test treatment, abdominal pain and Wexner score decreased from 3.6 to 1.5 and 18.6 to 8.5 (p  < 0.001), respectively. Improvement of symptoms sustained during a median follow-up of 22.1 months (12.2-36.8) in 42.9 % of patients. On a scale from 0 to 100, quality of life was 7 points lower than the norm score (mean 70 vs. 77). SNM is a therapeutic option for children with chronic constipation not responding to intensive oral and/or laxative therapy, providing benefits that appear to be sustained over prolonged period of tim