Physicians perceive that ostomates have decreased quality of life but not overall health: An international survey of physicians

Abstract

Aim The aim of this work was to evaluate physicians' perceptions of ostomates' quality of life (QoL) and comfort of care among an international sample of physicians caring for ostomates. Method This was a cross‐sectional survey study. We conducted a survey of primary care physicians (PCP), gastroenterologists (GI), and general surgeons (GS) from three continents using the SERMO online physician platform. We piloted the survey for content, clarity and domain development using a pilot sample of physicians from each speciality before use. We summarized responses to questions related to physician comfort of ostomate care with descriptive statistics. We conducted multiple logistic regression with the primary outcome of physician perception of ostomate QoL. Results A total of 617 physicians (PCP 264, GI 176, GS 177) completed the survey representing North America, Europe and Australia similarly. The average age was 46 years and 21% were women. Ninety per cent of physicians care for an ostomate at least once per month. Eighty eight per cent had access to enterostomal nurses. Eighty two per cent of physicians believed that ostomates have decreased QoL. Forty seven per cent believed that ostomates have decreased overall health. Almost half of respondents answered incorrectly to a ‘bogus question’ citing fake clinical evidence supporting a negative impact of ostomies on social relationships. Increased physician comfort in ostomy care (OR 1.30, p = 0.04) and US‐based physicians (OR 1.75, p = 0.01) were associated with increased odds of answering that ostomates have no decreased QoL. Conclusion Among a diverse international sample, most physicians believe that ostomates have decreased QoL but not overall health. Physician implicit bias, physician comfort and geographical variability account for these findings. Targeted efforts to increase physician comfort in ostomate care and establish universal best practices is needed.

‘That gave me a lot of comfort, that he would ask my opinion about how we wanted to talk about this’: A qualitative analysis of clinical communication experiences of ostomy patients

“…This study supports and expands previous work that has found that navigating healthcare can be an additional stressor for people with ostomies 11. Respondents reported both successes and challenges, and discussed healthcare encounters that were with ostomy experts as well as with clinicians who were unfamiliar with ostomies.…”

“…This study supports and expands previous work that has found that navigating healthcare can be an additional stressor for people with ostomies. 11 Respondents reported both successes and challenges, and discussed healthcare encounters that were with ostomy experts as well as with clinicians who were unfamiliar with ostomies. When describing successes in communication, participants recalled when clinicians dedicated time to educate them about their ostomy, including giving them thorough guidance on life with an ostomy, trialling creative solutions for their ostomy care, and providing the patients with hands-on training to reduce uncertainty about caring for their ostomy.…”

“…Public and social situations can be complicated as ostomates learn to cope with new routines, noises, smells and questions; they may experience embarrassment and uncertainty throughout 9 10. Navigating the healthcare system often becomes an additional stressor, with many healthcare professionals not knowing much about ostomies 11…”

“… 9 10 Navigating the healthcare system often becomes an additional stressor, with many healthcare professionals not knowing much about ostomies. 11 …”

Is it “all in the bag?” Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network

“…8 Additionally, HCPs have expressed difficulties in knowing when the right time to begin discussions about ostomies may be and which HCP may be ideal to lead these discussions 8 -does the gastroenterologist (GI) lead the discussion as the patient's primary HCP or defer to the surgeon? Ostomy-related stigma for HCPs remains pervasive, [18][19][20][21][22] including perceptions by HCPs that people living with ostomies have lower quality of life, 23 though there is limited scientific understanding of how HCPs perceive ostomy-related stigma for themselves and their receptions of ostomy-related stigma for patients and families; understanding ostomy-related stigma from HCPs' perspectives would represent a critical opportunity to directly tackle and work to reduce stigma for this surgery and support neutral and calm conversations about complex care decisions.…”