Understanding the role of the primary care physician in the management of patients with Crohn's perianal fistulas.

OBJECTIVES: To understand the role of primary care physicians (PCPs) in the recognition, diagnosis, and management of Crohn's perianal fistulas (CPF) and their referral patterns and treatment expectations. METHODS: This survey-based study was conducted between September 2020 and October 2020. US-based PCPs managing at least one patient with Crohn's disease per week were included. Participants were presented with two case vignettes relevant to primary care practice; Case Vignette 1 comprised three parts and focused on initial CPF presentation and progression to partial response; Case Vignette 2 focused on recurrent CPF. Survey questions elicited the physician's clinical approach to each case. Data were presented as descriptive statistics. RESULTS: Overall, 151 PCPs (median 23 years in practice) who saw about three patients per month with new/existing CPF responded. For Case Vignette 1, upon identification of a fistulous tract, 89% of respondents would refer the patient, mostly to a colorectal surgeon or gastroenterologist. Most PCPs (69%) would begin the patient on medication; 46% would conduct a diagnostic/imaging study. Treatment expectations after referral varied: 55% of respondents believed surgeons would place a seton or use one prior to surgery; 23% expected medical management only; 23% were unsure. Case Vignette 2 revealed that 98% of PCPs preferred to be involved in patient care after referral; however, only 49% were. Of these, 76% considered reinforcing patient treatment adherence as their primary role. While 80% of PCPs were at least moderately satisfied with communication and care coordination with multidisciplinary teams, 52% considered lack of access to specialists as at least a moderate barrier to multidisciplinary team management. CONCLUSION: PCPs want more involvement in multidisciplinary management of patients with CPF. Continuing education providing PCPs with up-to-date information on diagnostic modalities, treatment options, early diagnosis, the role of PCPs within a multidisciplinary team, and effective initial CPF care is required.

What were the study's aims?To understand how primary care physicians recognize, treat, and monitor patients with Crohn's disease-related perianal fistulas (small tunnels between the bowel and skin near the anus).How was the study done?US-based primary care physicians, including internists, were included if they had experience in treating patients with Crohn's disease. Descriptions of the history and symptoms of two hypothetical patients were provided: one patient who may have Crohn's perianal fistulas and another patient whose Crohn's perianal fistulas had returned after being treated. After reading these descriptions, the physicians completed a questionnaire designed to show how they would help each patient.What did the study find out?Not all physicians treat patients with Crohn's perianal fistulas in the same way in terms of diagnostic tests and medical treatments, although most said they would refer them to a specialist if a fistula was identified. Many wanted to be involved in patient care after referral to a specialist but only half were. Of those, most thought their main role was to ensure patients followed the treatments given by specialists. More than half of primary care physicians thought a lack of access to specialists could be a barrier to care.How does this impact care?The physicians surveyed want more involvement in multidisciplinary teams who look after patients with Crohn's perianal fistulas. To do this, they need more education about the diagnosis and treatment of Crohn's perianal fistulas, and clarity around their role within multidisciplinary teams who manage these patients.

Patient and Caregiver Perspectives on Their Experiences With Crohn's Perianal Fistulas.

Background: Little is known about patients' perception of care and management of Crohn's perianal fistulas (CPF). This study was conducted to understand US patient and caregiver attitudes and challenges to CPF care. Methods: Patients with CPF and caregivers of patients with CPF completed a 36-question survey about their perceptions and challenges regarding the diagnosis, treatment, and overall management of CPF. Patients/caregivers were recruited via online Crohn's and fistula support group websites and forums and via their gastroenterologists (GEs) and surgeons from October 2020 through January 2021. Results: The survey was completed by 96 patients and 54 caregivers. Respondents reported over 60% and 14%-23% of CPF were diagnosed and treated by a GE or surgeon, respectively. Nearly all patients/caregivers wanted to be involved in treatment decision-making with their physicians (81%). While the majority of patients/caregivers were satisfied with their quality of care (65%) and access to care (67%), racial disparities exist and there is room for improvement. A smaller proportion of non-White versus White patients/caregivers reported satisfaction with care quality (39% vs 72%, respectively) and access to care (57% vs 69%, respectively). Half of non-White patient/caregivers (50%) versus 69% of White patient/caregivers knew where to access CPF information. Most patients/caregivers (69%) stated that they would benefit from more information on managing day-to-day CPF symptoms. Significant barriers perceived by patients/caregivers to receiving optimal CPF care included lack of effective treatments (69%) and lack of access to specialist care (68%). Conclusions: Improvements in multidisciplinary CPF care are required to optimize treatment.

Patients' Perspectives, Experiences, and Concerns With Perianal Fistulae: Insights From Online Targeted-Disease Forums.

Background: Perianal fistulae can undermine physical, emotional, and social well-being in patients with Crohn's disease and are challenging to manage. Social media offers a rich opportunity to gain an in-depth understanding of the impact of perianal fistulae on patients' daily lives outside of controlled environments. In this study, we conducted social media analytics to examine patients' experiences with perianal fistulae and assessed the impact of perianal fistulae on patients' behavior and overall well-being. Methods: We used a mixed-method approach to examine 119 986 publicly available posts collected from 10 Crohn's disease forums in the United States between January 01, 2010 and January 01, 2020. Discussions related to Crohn's perianal fistulae were retrieved. We randomly selected 700 posts and qualitatively analyzed them using an inductive thematic approach. We then applied a latent Dirichlet allocation probabilistic topic model to explore themes in an unsupervised manner on the collection of 119 986 posts. Results: In the qualitative analysis, 5 major themes were identified: (1) burden of perianal fistula; (2) challenges associated with treatment; (3) online information seeking and sharing; (4) patient experiences with treatments; and (5) patients' apprehension about treatments. In the quantitative analysis, the percentages of posts related to the major themes were (1) 20%, (2) 29%, (3) 66%, and (4) 28%, while the topic model did not identify theme 5. Conclusions: Social media reveals a dynamic range of themes governing patients' perspectives and experiences with Crohn's perianal fistulae. In addition to the biopsychosocial burden, patients frequently express dissatisfaction with current treatments and often struggle to navigate among available management options.

Health Care Costs and Resource Utilization Among Patients With Crohn's Disease With and Without Perianal Fistula.

BACKGROUND: Perianal fistula (PAF), a complication of Crohn's disease (CD), is associated with substantial economic costs and poor prognosis. We determined prevalence of PAF CD in the United States and compared costs and health care resource utilization (HRU) of PAF CD patients with matched non-PAF CD patients. METHODS: This was a retrospective cohort study of claims data from the IBM MarketScan Commercial Database from October 1, 2015, to September 30, 2018. Eligible patients were aged 18 to 89 years with ≥2 CD diagnoses. Patients with PAF CD had ≥1 PAF diagnosis or procedure code and were matched with non-PAF CD patients. Cumulative prevalence of PAF CD in the US population was calculated across total patients in MarketScan. All-cause and gastrointestinal (GI)-related costs and HRU were compared between groups using a generalized linear model (GLM). RESULTS: Cumulative 3-year prevalence of PAF was 7.70% of patients with CD (N = 81,862) and 0.01% of the US population. Among PAF CD (n = 1218) and matched non-PAF CD (n = 4095) patients, most all-cause costs and HRU were GI-related. Mean total all-cause and GI-related health care costs per patient and per year for PAF CD were $85,233 and $71,612, respectively, vs $40,526 and $29,458 for non-PAF CD (P < .0001). Among PAF CD vs non-PAF CD patients, GLM-adjusted proportions of patients with GI-related inpatient, outpatient, or pharmacy visits, mean GI-related inpatient length of stay, and mean GI-related surgeries were higher (P < .0001 for all comparisons). CONCLUSIONS: Costs and HRU are significantly higher for patients with PAF CD vs non-PAF CD patients, highlighting the economic burden of the disease.

P036 Disparities in Diagnosis and Management of Patients with Crohn's Perianal Fistulas: Results of a US National Patient and Caregiver Survey.

BACKGROUND: Crohn's perianal fistulas (CPF) contribute to lowered quality of life for patients with Crohn's disease. Previous research has indicated potential racial and/or ethnic disparities in diagnosis and management of patients with CPF. This study aimed to expand on previous investigations in the management of patients with CPF to identify educational needs and explore potential disparities in care. METHODS: To understand specific educational needs of US patients and caregivers of patients with CPF, a survey instrument was developed and fielded to patients and caregivers in September/October 2020. Subanalysis and inferential statistics were used to segment the patient/caregiver sample by race/ethnicity and determine potential areas of care disparities. RESULTS: Of 148 patient/caregiver responses analyzed, 28 were non-white (including American/Alaskan Native Indian, Black/African American, Hispanic/Latino, Native Hawaiian/Pacific Islander, and multiethnic); 12/28 were CPF patients and 16/28 were parents or caregivers of CPF patients. The reported mean age of the CPF patient was 32 years for non-whites and 35 for whites. Insurance coverage varied between groups, with non-whites mainly covered by Medicare/Medicaid (68% vs 32% whites), and whites mainly covered by private insurance (64% vs 25% non-whites). Non-white patient/caregivers reported a longer mean time between symptoms and diagnosis (2.08 yr) than white patients/caregivers (less than 1 yr). White patients/caregivers reported more (50%) current use of biologics than non-whites (36%); however, past use of biologics was near equal (51%) for whites and (50%) for non-whites. Of patients who had undergone surgical procedures (86.5%), non-whites had a lower number of different surgery types (1.64) than whites (2.31). The top two reported goals of treatment for both groups were decreasing pain and healing the fistula. Less non-white patients/caregivers agreed or strongly agreed they were satisfied with their current quality of care (39%) and access to care (57%) than white patients/caregivers (72% and 69%, respectively). Non-whites were more likely to disagree or strongly disagree that the main doctor who treats CPF is knowledgeable about their CPF and its treatments (25% vs 3% whites), and that they agree or strongly agree they know more about CPF than their doctor (21% vs 15% whites). Patients/caregivers (non-whites vs whites) perceived somewhat, very or extremely significant barriers to care to be inadequate community social services for CPF care (82% vs 79%), out-of-pocket costs of care (71% vs 84%), limited information to make difficult decisions for their CPF treatment (82% vs 86%), physical/emotional stress of managing their CPF (82% vs 79%), lack of access to specialist care (89% vs 88%) and lack of effective treatments (86% vs 89%). Only 50% of non-white patients/caregivers and 69% of white patients/caregivers agreed or strongly agreed that they know where to go to get CPF information. CONCLUSION: Disparities in diagnosis and management of CPF exist between non-white and white patients/caregivers, including length of time to diagnosis, perceptions of quality of care and barriers to treatment. Further research into disparities in the management of CPF is needed, as is CPF education for patients/caregivers and HCP education on managing CPF in minority populations.

Clinical trials in crystal arthropathy.

A few clinical trials have evaluated therapeutic agents for crystal-associated arthropathy. Most of the studies are uncontrolled and observational. Management of patients who have acute crystal arthropathies usually is symptomatic with long-term management depending on crystal composition. In trials of gout, studies focus on acute symptomatic treatment, foregoing chronic management, which is aimed at reducing the concentration of serum urate. In those who have calcium crystals, however, there is no definitive or effective long-term treatment in chronic gout. The xanthine oxidase inhibitor and uricosurics are the agents used most commonly. Newer compounds in clinical trials show promise as effective and safe therapeutic options.