Burden of Disease Associated with Refractory and Unexplained Chronic Cough in Canada: Results from a National Survey.

INTRODUCTION: Chronic cough (persisting for ≥ 8 weeks) is a common disorder that includes refractory chronic cough (RCC; cough that persists despite treatment of underlying disease) and unexplained chronic cough (UCC; cough with no identifiable cause). We evaluated self-reported health-related quality of life (HR-QoL) and work/activity impairment associated with RCC/UCC in Canada. METHODS: Our exploratory study included Canadians in the Leger Opinion Panel with RCC or UCC. Key entry criteria were ≥ 18 years of age, cough for ≥ 8 weeks, not currently smoking/quit ≥ 1 year ago, no serious respiratory disease or lung cancer, and not taking angiotensin-converting enzyme inhibitors. Respondents completed a 30-min online survey with general and cough-specific HR-QoL questionnaires, including the EuroQol (EQ) visual analogue scale (VAS), EQ-5-dimension 5-level (EQ-5D-5L), cough severity VAS, Leicester Cough Questionnaire (LCQ), and Work Productivity and Activity Impairment-Specific Health Problem (WPAI-SPH). RESULTS: Of 49,076 individuals who completed the chronic cough screening questionnaire (July 30-September 1, 2021), 1,620 (3.3%) met entry criteria for RCC/UCC and 1,046 (2.1%) completed the survey. The mean age of respondents was 45 years and 61% were female. Respondents reported impairments in global HR-QoL (EQ-VAS 73.8, 61% with anxiety/depression on the EQ-5D-5L) and cough-specific HR-QoL (mean cough severity VAS score 29.7, LCQ index 15.2). Work and non-work activities were reduced by 34% and 30%, respectively, on the WPAI-SPH. CONCLUSION: RCC/UCC is prevalent in Canada and associated with impaired HR-QoL, particularly in mental health domains. Additional support and management options may be required to fully address this burden.

Chronic rhinosinusitis with nasal polyps and allergic rhinitis as different multimorbid treatable traits in asthma.

Background: Respiratory multimorbidities are linked to asthma, such as allergic rhinitis (AR) with early allergic asthma and chronic rhinosinusitis (CRS) with nasal polyps (CRSwNP) with late nonallergic asthma. Objective: Our aim was to investigate the association of asthma severity and control with specific upper airway phenotypes. Method: Patients with asthma were prospectively recruited from 23 pulmonology and ear, nose, and throat clinics. Asthma severity and control, as well as upper airway comorbidities (AR and non-AR [NAR], CRSwNP, and CRS without nasal polyps [CRSsNP]) were assessed according to international consensus guidelines definitions. Results: A total of 492 asthmatic patients were included. Half of the asthmatic patients (49.6%) had associated rhinitis (37.0% had AR and 12.6% had NAR) and 36.2% had CRS (16.7% had CRSsNP and 19.5% had CRSwNP), whereas 14.2% had no sinonasal symptoms. Most cases of AR (78%) and NAR (84%) were present in patients with mild-to-moderate asthma, whereas CRSwNP was more frequent in patients with severe asthma (35% [P < .001]), mainly nonatopic asthma (44% [P < .001]). Patients with severe asthma with CRSwNP had worse asthma control, which was correlated (r = 0.249 [P = .034]) with sinus occupancy. Multiple logistic regression analysis showed that late-onset asthma, intolerance of aspirin and/or nonsteroidal anti-inflammatory drugs, and CRSwNP were independently associated with severe asthma. Conclusion: Severe asthma is associated with CRSwNP, with sinus occupancy affecting asthma control. This study has identified 2 main different upper airway treatable traits, AR and CRSwNP, which need further evaluation to improve management and control of patients with asthma.

Self-medication with analgesics reported by patients with ulcerative colitis: An anonymous survey / Automedicación con analgésicos en pacientes con colitis ulcerosa: encuesta anónima

Introduction: Analgesics are widely used, but evidence regarding whether their use increases the risk of inflammatory bowel disease (IBD) flares or complications is unclear. Therefore, self-medication with analgesics in IBD is usually not recommended. The aim of this study was to explore the prevalence of self-medication with analgesics in a cohort of ulcerative colitis (UC) patients and to identify reasons and factors associated with self-medication. Methods: This cross-sectional study included consecutive unselected adult patients with UC. Participants were asked to complete an anonymous web-based survey with multiple-choice questions and closed responses. No clinical data were collected. Results: A total of 546 patients (61.2% women, mean age 39.9 years) completed the survey. The prevalence of self-medication with analgesics was 49.8% (272/546). Paracetamol (45.2%) and metamizole (21.2%) were the most frequently used drugs; frequencies of self-medication were <5% for other analgesics (nonsteroidal anti-inflammatory drugs, opioids). The most frequent reasons for self-medication were the need for quick symptom relief and that it had been agreed with/prescribed by the treating physician. Multivariable analysis identified female sex (odds ratio [OR]=1.9), sick leave (OR=2.2), treatment with intravenous drugs (OR=2.9), and emergency room visit (OR=2.3) as variables associated with self-medication, whilst follow-up by a nurse was associated with less self-medication (OR=0.6). Conclusion: The frequency of self-medication with analgesics in UC patients is high and appears to be associated with variables suggesting worse disease control. Closer follow-up, including a specialized nurse, could decrease self-medication. Strategies to improve disease control, including close monitoring of symptoms such as pain, are needed.(AU)

Introducción: Los analgésicos son medicamentos ampliamente utilizados, pero las evidencias sobre si su uso aumenta el riesgo de brotes o complicaciones de la enfermedad inflamatoria intestinal (EII) no están claras; por lo tanto, en general, no se recomienda la automedicación con analgésicos en la EII. El objetivo de este estudio fue explorar la prevalencia de automedicación con analgésicos en una cohorte de pacientes con colitis ulcerosa (CU) e identificar los motivos y los factores asociados a la automedicación. Métodos: En este estudio transversal se incluyeron pacientes adultos con CU consecutivos y no seleccionados. Se pidió a los participantes que completasen una encuesta anónima por Internet con preguntas de elección múltiple y respuestas cerradas. No se recogieron datos clínicos. Resultados: Completaron la encuesta un total de 546 pacientes (61,2% mujeres; edad media 39,9 años). La prevalencia de automedicación con analgésicos fue del 49,8% (272/546). El paracetamol (45,2%) y metamizol (21,2%) fueron los fármacos utilizados con más frecuencia; la tasa de automedicación con otros analgésicos (antiinflamatorios no esteroideos, opioides) fue <5%. Los motivos más frecuentes para la automedicación fueron la necesidad de alivio sintomático rápido y que había sido acordado con/prescrito por el médico responsable del tratamiento. El análisis multivariante identificó el sexo femenino (odds ratio [OR]=1,9), la baja laboral (OR=2,2), el tratamiento con fármacos intravenosos (OR=2,9) y las visitas a urgencias (OR=2,3) como variables asociadas a la automedicación, mientras que el seguimiento por el personal de enfermería se asoció a menos automedicación (OR=0,6). Conclusión: La frecuencia de automedicación con analgésicos en pacientes con CU es alta y parece estar asociada a variables que sugieren peor control de la enfermedad. Un seguimiento más estrecho, incluyendo personal de enfermería especializado, podría disminuir la automedicación.(AU)

Self-medication with analgesics reported by patients with ulcerative colitis: An anonymous survey.

INTRODUCTION: Analgesics are widely used, but evidence regarding whether their use increases the risk of inflammatory bowel disease (IBD) flares or complications is unclear. Therefore, self-medication with analgesics in IBD is usually not recommended. The aim of this study was to explore the prevalence of self-medication with analgesics in a cohort of ulcerative colitis (UC) patients and to identify reasons and factors associated with self-medication. METHODS: This cross-sectional study included consecutive unselected adult patients with UC. Participants were asked to complete an anonymous web-based survey with multiple-choice questions and closed responses. No clinical data were collected. RESULTS: A total of 546 patients (61.2% women, mean age 39.9 years) completed the survey. The prevalence of self-medication with analgesics was 49.8% (272/546). Paracetamol (45.2%) and metamizole (21.2%) were the most frequently used drugs; frequencies of self-medication were <5% for other analgesics (nonsteroidal anti-inflammatory drugs, opioids). The most frequent reasons for self-medication were the need for quick symptom relief and that it had been agreed with/prescribed by the treating physician. Multivariable analysis identified female sex (odds ratio [OR]=1.9), sick leave (OR=2.2), treatment with intravenous drugs (OR=2.9), and emergency room visit (OR=2.3) as variables associated with self-medication, whilst follow-up by a nurse was associated with less self-medication (OR=0.6). CONCLUSION: The frequency of self-medication with analgesics in UC patients is high and appears to be associated with variables suggesting worse disease control. Closer follow-up, including a specialized nurse, could decrease self-medication. Strategies to improve disease control, including close monitoring of symptoms such as pain, are needed.

Patient-Evaluated Quality of Care is Related to Better Inflammatory Bowel Disease Outcomes: The IQCARO II Project.

BACKGROUND: Measuring quality of care (QoC) from a patient's perspective is becoming increasingly important in inflammatory bowel disease. OBJECTIVE: The objective of this study was to determine whether patients' evaluations of QoC correlate with better inflammatory bowel disease outcomes. METHODS: A survey including patients' characteristics, a decalogue of QoC indicators, and self-reported disease outcomes was completed by Spanish patients with inflammatory bowel disease. A QoC index (QoCI) was constructed with the sum of the "yes" answers in the decalogue. We evaluated the correlation of QoCI with outcomes. A sub-analysis comparing patients with high QoCI vs those with low QoCI was performed (QoCI = 10 or ≤ 7). RESULTS: Seven hundred and eighty-eight questionnaires were analyzed. Mean age of participants was 43.4 years (63% women). Mean QoCI was 8.1 (± 2.4). The QoCI correlated significantly with activity of the disease, number of flares, emergency/unscheduled visits, and disease control. Patients scoring in the first QoCI quartile reported a decreased rate of moderate/severe disease (34.8% vs 55.3%, p < 0.001), fewer numbers of flares (p < 0.001), and fewer emergency/unscheduled visits (p < 0.001) compared with those in the lower QoCI quartile. The high QoC group also reported better disease control. CONCLUSIONS: Patient-evaluated QoC correlates with better outcomes. Evaluation of QoC by patients may be useful to detect inadequate care and improve inflammatory bowel disease outcomes.

Self-medication with oral corticosteroids reported by patients with ulcerative colitis: characteristics, reasons and patients' behaviors.

BACKGROUND: Few studies have examined self-medication with corticosteroids among patients with ulcerative colitis (UC). AIMS: To assess the frequency of self-medication with oral corticosteroids in UC patients, and associated factors and reasons. METHODS: An anonymous, voluntary, web-based survey was administered to adults with UC recruited via a Spanish patient association (ACCU) and hospital gastroenterology departments. Information was provided by patients; no clinical data were collected. Descriptive statistics and comparisons of frequencies are displayed. RESULTS: Among 546 respondents (mean age 39.9 years, median duration of UC since diagnosis 7 years,) 36 (6.6%) reported self-medication with oral corticosteroids during the past year (once: 23 patients; 2-3 times: 10 patients; >3 times: 3 patients). Self-medication was more common among patients managed in general gastroenterology vs. inflammatory bowel disease clinics [23 (9.0%) vs. 11 (2.9%), P = 0.019], patients with no regular follow-up [4 (22.2%) vs. 32 (6.1%), P = 0.026] and patients with more flares (P < 0.001). Patients who stored steroids from previous flares (17.9% vs. 6.0%, P < 0.001) or who lived with a partner taking steroids (9.3% vs. 1.1%, P = 0.038) were more likely to self-medicate than other patients. Common reasons for self-medicating included the need for quick symptom relief (55.6%), fear of worsening (47.2%) and difficulty in getting an appointment (25.0%). Only seven patients (19.4%) informed their physician when they started self-medicating and only four (11.1%) declared they would not start corticosteroids again. CONCLUSION: Self-medication with oral corticosteroids is not a common practice among patients with UC in Spain, but several areas of improvement exist.

Improving Quality of Care in Inflammatory Bowel Disease Through Patients' Eyes: IQCARO Project.

BACKGROUND: Quality improvement is a major topic in inflammatory bowel disease (IBD) care, and measuring quality of care (QoC) is necessary for QoC improvement. Most QoC projects or consensus statements are designed from the health care professional point of view. Having QoC indicators designed for and fully evaluable by patients may provide a key tool for external evaluation of QoC improvement measures. The aim of the IQCARO project was to identify indicators to measure QoC from the IBD patient's point of view. METHODS: An extensive review of the literature to identify indicators of QoC was performed; first the identified indicators were reviewed by a steering committee including patients, nurses, IBD specialists, and methodologists. Then 2 focus groups of IBD patients analyzed the QoC indicators to determine whether they could be understood and evaluated by patients. The final QoC indicators were selected by a group of IBD patients using a Delphi consensus methodology. RESULTS: An initial list of 54 QoC indicators was selected by the steering committee. The QoC indicators were evaluated by 16 patients who participated in 2 focus groups. They identified 21 indicators that fulfilled the understandability and evaluability requirements. The 10 most relevant QoC indicators were selected by 26 patients with IBD using a Delphi consensus. The selected items covered important aspects of QoC, including professionalism, patients' autonomy, information, accessibility, and continuity of care. CONCLUSIONS: The present Delphi consensus identified QoC indicators that are useful for developing and measuring improvement strategies in the management of IBD.

Endoscopic follow-up and therapeutic attitude after ileocolonic resection in a nationwide Spanish cohort of Crohn's disease patients: the Practicrohn study.

Background: In patients with Crohn's disease (CD), endoscopic recurrence precedes clinical recurrence after ileocolonic resection. Guidelines recommend ileocolonoscopy within the first year after surgery. The study examined endoscopic monitoring and treatment decisions in CD patients in a real-world setting. Methods: The Practicrohn study involved adult patients from 26 Spanish hospitals who underwent ileocolonic resection with anastomosis from 2007 to 2010. Medical records data were collected retrospectively from diagnosis to index surgery and up to 5 years after surgery. Results: Of 314 analyzed patients, 262 (83%) underwent endoscopic evaluation, but only 30% (n = 95) had planned endoscopy as part of follow-up within the first year after surgery. An upward trend was observed in the proportion of endoscopies performed or planned within the first year after surgery across the selection period. More patients with than without endoscopic recurrence in the first year after surgery had a medication change, mainly for endoscopic activity in the absence of clinical symptoms (54 vs 13%; p = 0.02). Conclusions: Between 2007 and 2010, endoscopic monitoring of patients within the first year after CD-related surgery was less than adequate based on current standards, but showed improvement. Medication changes were in general agreement with current guideline recommendations. This work was presented as a poster (number P686) by M. Barreiro-de Acosta et al. at ECCO (European Crohn's and Colitis Organisation) '18 in Vienna, Austria, 14-17 February 2018.

Perioperative management and early complications after intestinal resection with ileocolonic anastomosis in Crohn's disease: analysis from the PRACTICROHN study.

BACKGROUND: This study is aimed at describing the prevalence of and risk factors associated with early post-operative complications after Crohn's disease-related intestinal resection. METHODS: This was a retrospective analysis of data from the PRACTICROHN cohort. Adult Crohn's disease patients who underwent ileocolonic resection with ileocolonic anastomosis between January 2007 and December 2010 were included. The complications evaluated included death, ileus, anastomotic leak, abscess, wound infection, catheter-related infection, digestive bleeding and other extra-abdominal infections that occurred in the 30 days after surgery. RESULTS: A total of 364 patients (median age at surgery 38 years and 50% men) were included. Indication for surgery was: stricturing disease (46.4%), penetrating disease (31.3%), penetrating and stricturing disease (14.0%) or resistance to medical treatment (5.8%). Early complications were recorded in 100 (27.5%) patients, with wound infection, intra-abdominal abscess and anastomotic leakage being the most frequent complications. Median hospitalization duration was 16 days for patients with complications vs. 9 days without complications (P < 0.001). Complications were more common among patients with penetrating disease (36/114, 31.6%) and those refractory to treatment (9/21, 42.9%) compared with stricturing disease (45/169, 26.6%) or stricturing + penetrating disease (6/51, 11.8%) (P = 0.040). The rate of complications was higher among patients with diagnosis made at the time of surgery (15/31, 48.4%) compared with the rest (85/331, 25.7%) (P = 0.013). Medication received at the time of surgery did not affect the rate of complications. CONCLUSIONS: Almost a quarter of patients developed early complications after intestinal resection. Penetrating disease and urgent surgery were associated with an increased risk of complications.

The experience of inflammatory bowel disease patients with healthcare: A survey with the IEXPAC instrument.

To assess inflammatory bowel disease (IBD) patients' experience of chronic illness care and the relationship with demographic and healthcare-related characteristics.This cross-sectional survey used the Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC) questionnaire to identify parameters associated with a better healthcare experience for IBD patients. IEXPAC questionnaire responses are grouped into 3 factors - productive interactions, new relational model, and patient self-management, scoring from 0 (worst) to 10 (best experience). Scores were analyzed by bivariate comparisons and multiple linear regression models.Surveys were returned by 341 of 575 patients (59.3%, mean age 46.8 (12.9) years, 48.2% women). Mean (SD) IEXPAC score was 5.9 (2.0); scores were higher for the productive interactions (7.7) and patient self-management factors (6.7) and much lower for the new relational model factor (2.2). Follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines were associated with higher (better) overall patient experience score, and higher productive interactions and self-management factor scores. A higher productive interactions score was also associated with patients receiving medication subcutaneously or intravenously. Higher new relational model scores were associated with follow-up by a nurse, affiliation to a patients' association, receiving help from others for healthcare, a lower number of medicines and a higher educational level.In patients with IBD, a better overall patient experience was associated with follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines.

Management and outcomes of patients with Crohn's disease with first vs multiple surgeries: results from the PRACTICROHN study.

BACKGROUND: Surgery in Crohn's disease (CD) may be associated with poor prognosis and clinical and surgical recurrence. The aim of this study was to describe and compare the post-operative management and outcomes of patients with CD who underwent first vs recurrent surgeries. METHODS: Observational study that included adult CD patients from 26 Spanish hospitals who underwent ileocolonic resection with ileocolonic anastomosis between January 2007 and December 2010. Data were retrospectively collected from the medical records. RESULTS: Data from 314 patients were analysed, of whom 262 (83%) underwent first surgery and 52 (17%) referred to previous CD surgeries. Baseline characteristics were similar between the two groups except for a higher rate of stricturing behavior at diagnosis among re-operated patients (P = 0.03). After surgery, a higher proportion of re-operated patients received prophylactic treatment with immunomodulators compared with patients with first surgery (P = 0.04). In re-operated patients, time to clinical recurrence was not associated with the fact of receiving or not prophylaxis, whereas, in patients with first surgery, recurrence-free survival was greater when prophylaxis was received (P = 0.03). CONCLUSIONS: After surgery, a higher proportion of patients with previous surgeries received prophylactic treatment with immunomodulators compared with patients with first surgery. Although prophylactic treatment was beneficial for preventing clinical recurrence in patients operated on for the first time, it did not significantly reduce the risk of further recurrence in patients with previous surgeries. This suggests that effective prophylactic therapies are still needed in this subset of patients.

Patients' perceptions of the impact of ulcerative colitis on social and professional life: results from the UC-LIFE survey of outpatient clinics in Spain.

PURPOSE: Ulcerative colitis (UC) may cause many patients to miss out on important personal and professional opportunities. We therefore conducted a survey (UC-LIFE) to assess patients' perceptions of the impact of UC on social and professional lives. PATIENTS AND METHODS: Consecutive unselected UC patients aged ≥18 years were recruited from 38 outpatient clinics in Spain. Patients completed the survey at home, returning it by post. The survey comprised 44 multiple-choice questions, including questions about the impact of UC on social, personal, professional, and academic activities. RESULTS: Of 585 patients invited, 436 (75%) returned the survey (mean age 46 years; 47% women). High proportions of patients considered their disease "sometimes", "frequently" or "mostly/always" influenced leisure activities (65.1%), recreational or professional activities (57.6%), or relationships with relatives or friends (9.9%). Patients also reported that UC influenced their decision to have children (17.2%), or their ability to take care of children (40.7%); these percentages were higher in women and in younger patients. Overall, 47.0% of patients declared that UC influenced the kind of job they performed, 20.3% had rejected a job due to UC, 14.7% had lost a job due to UC, and 19.4% had had academic problems due to UC. CONCLUSION: Beyond symptoms alone, UC imposes an enormous additional burden on patients' social, professional, and family lives. This extra burden clearly needs to be addressed so that the ultimate goal of IBD treatment - normalization of patient quality of life - can be attained by as many patients as possible.

Knowledge of disease and access to a specialist reported by Spanish patients with ulcerative colitis. UC-LIFE survey.

BACKGROUND AND AIM: Education of patients with ulcerative colitis (UC) about their disease and access to a specialist are important to improve health outcomes. Our objective was to determine, by collecting information directly from the patients, their information sources and knowledge of the disease, and the options for access to the gastroenterologist. METHODS: The information was collected using a printed survey handed out by 39 gastroenterologists to 15 consecutive adult patients with UC. Patients answered anonymously from their home. The responses were stratified by hospital size (> 900; 500-900; < 500 beds). RESULTS: A total of 585 patients received the survey and 436 responded (74.5%; mean age of 46 years [13.5], 53% men). The main information source was the specialist physician (89.2%). Between 32% and 80% of patients had areas of improvement regarding knowledge of their disease. Knowledge of the disease was better in patients from small hospitals (< 500 beds). The frequency of routine visits was also higher in small hospitals. In case of a flare-up, 60% stated they were able to contact their doctor by phone and 37%, that they could get an appointment on the same day. The percentage stating that they had to ask for an appointment and wait until their physician was available was lower in small hospitals. CONCLUSIONS: There are areas of improvement with regard to knowledge of their disease in patients with UC followed in hospital clinics. Patients followed in small hospitals seem to know their disease better, are followed more frequently in the clinic, and have better access in case of a flare-up.

Incidence and Management of Recurrence in Patients with Crohn's Disease Who Have Undergone Intestinal Resection: The Practicrohn Study.

BACKGROUND: More than 50% of patients with Crohn's disease require intestinal resection at least once. Postoperative recurrence (POR) is almost uniform if prophylactic treatment is not started early. Endoscopic monitoring is generally advised. We studied the incidence and management of recurrence in patients who had undergone intestinal resection. METHODS: Practicrohn was an observational retrospective study performed in 26 Spanish hospitals including patients aged ≥18 years who underwent Crohn's disease-related ileocolonic resection between January 2007 and December 2010. We recorded preventive treatments, the incidence of clinical recurrence in daily practice, and associated risk factors. RESULTS: The study population comprised 314 patients. Median (interquartile range) time from diagnosis to surgery was 6 (1-12) years. Prophylaxis for POR was administered to 208 patients (68%). Endoscopy was performed in 143 (46%) patients the first year after surgery. Clinical POR was detected in 97 patients (31%) after a median 315 (65-748) days. The cumulative probability of clinical POR was 16%, 27%, and 31% at 1, 3, and 5 years, respectively, being higher among patients not receiving immunomodulators as compared to those who received prophylaxis (P = 0.014). Forty-five patients (14%) required reoperation at 5 years after a median time from the first intervention of 228 (133-527) days. CONCLUSIONS: In this real-life study, up to one-third of patients with Crohn's disease did not start preventive therapy after intestinal resection, and almost half of them were not endoscopically monitored as recommended. In this setting, 30% of patients developed clinical POR within the first 5 years after surgery, thus indicating that there is room for improvement.

Conocimiento de la enfermedad y acceso al especialista descrito por pacientes españoles con colitis ulcerosa. Encuesta UC-LIFE / Knowledge of disease and access to a specialist reported by Spanish patients with ulcerative colitis. UC-LIFE survey

Antecedentes y propósito: la educación de los pacientes con colitis ulcerosa (CU) sobre su enfermedad y el acceso al especialista es importante para mejorar los resultados en salud. Nuestro objetivo fue conocer, recogiendo información directamente de los pacientes, sus fuentes de información y su conocimiento de la enfermedad, y las posibilidades de acceso al especialista en gastroenterología. Métodos: la información fue recogida mediante encuesta impresa, entregada por 39 gastroenterólogos a 15 pacientes adultos consecutivos con CU. Los pacientes contestaron de forma anónima desde su domicilio. Las respuestas se estratificaron según el tamaño del hospital (> 900; 500-900; < 500 camas). Resultados: quinientos ochenta y cinco pacientes recibieron la encuesta y 436 contestaron (74,5%; edad media 46 años (13,5), 53% hombres). La principal fuente de información fue su médico especialista (89,2%). Entre un 32% y un 80% presentaron áreas de mejora en el conocimiento de su enfermedad. El conocimiento de la enfermedad fue mejor en pacientes de hospitales pequeños (< 500 camas). La frecuencia de revisiones rutinarias fue mayor también en hospitales pequeños. Ante empeoramiento, el 60% declaró poder contactar por teléfono con su médico y el 37%, conseguir cita el mismo día. El porcentaje que declaró tener que pedir cita y esperar disponibilidad fue menor en hospitales pequeños. Conclusiones: en pacientes con CU seguidos en consultas hospitalarias, existen áreas de mejora en el conocimiento de su enfermedad. Los pacientes seguidos en hospitales pequeños parecen conocer mejor su enfermedad, son seguidos con más frecuencia en la consulta y tienen mejor acceso en caso de empeoramiento (AU)

Background and aim: Education of patients with ulcerative colitis (UC) about their disease and access to a specialist are important to improve health outcomes. Our objective was to determine, by collecting information directly from the patients, their information sources and knowledge of the disease, and the options for access to the gastroenterologist. Methods: The information was collected using a printed survey handed out by 39 gastroenterologists to 15 consecutive adult patients with UC. Patients answered anonymously from their home. The responses were stratified by hospital size (> 900; 500-900; < 500 beds). Results: A total of 585 patients received the survey and 436 responded (74.5%; mean age of 46 years [13.5], 53% men). The main information source was the specialist physician (89.2%). Between 32% and 80% of patients had areas of improvement regarding knowledge of their disease. Knowledge of the disease was better in patients from small hospitals (< 500 beds). The frequency of routine visits was also higher in small hospitals. In case of a flare-up, 60% stated they were able to contact their doctor by phone and 37%, that they could get an appointment on the same day. The percentage stating that they had to ask for an appointment and wait until their physician was available was lower in small hospitals. Conclusions: There are areas of improvement with regard to knowledge of their disease in patients with UC followed in hospital clinics. Patients followed in small hospitals seem to know their disease better, are followed more frequently in the clinic, and have better access in case of a flare-up (AU)

Perceived Emotional and Psychological Impact of Ulcerative Colitis on Outpatients in Spain: UC-LIFE Survey.

BACKGROUND: Ulcerative colitis (UC) negatively impacts patients' health-related quality of life (HRQoL). AIM: The UC-LIFE survey aimed to evaluate the perceived everyday and emotional impact of UC on patients attending outpatient clinics in Spain and explored patient-physician communication. METHODS: Gastroenterologists handed the survey to consecutive unselected UC patients aged ≥18 years. Patients described their perception on the burden of symptoms and disease severity, social and emotional impact of UC on everyday life, disease knowledge and sources of information about the disease, and patient-physician communication. RESULTS: A total of 585 patients received the survey, and 436 returned it (74.5% response rate; mean age 46 years, 53% men). Most patients perceived that UC prevented them from leading a normal life (79.3%) and impaired sleep quality (76.1%). Most patients described an emotional impact due to UC, mainly feelings of depression and anxiety, and some 38% perceived that UC decreased their self-confidence. Despite most patients believing that their physician listened/asked about UC symptoms, many perceived that emotional/psychological support was lacking. CONCLUSIONS: Findings support the need for a more patient-centered approach to the care of UC patients, to include psychological, emotional, and social aspects. Improved patient-physician communication would be beneficial and may contribute to better HRQoL in UC patients.

Perception of disease burden and treatment satisfaction in patients with ulcerative colitis from outpatient clinics in Spain: UC-LIFE survey.

OBJECTIVES: Ulcerative colitis (UC) conditions patients' everyday life. With this survey, we aimed to assess the perceived disease burden, preferred treatment attributes, and treatment satisfaction reported by Spanish UC patients. METHODS: Consecutive unselected UC patients aged at least 18 years were recruited from outpatient hospital clinics. Patients completed the survey at home, returning it by postmail. With test-like questions, they described UC behavior, preferences, and satisfaction with treatment. RESULTS: Of 585 patients invited, 436 (75%) returned the survey (mean age 46 years, 53% men). Of these, 47.1% described their disease during the past year as 'controlled or nearly controlled', 28.0% as 'symptoms not impairing everyday life,' and 24.9% 'disruptive symptoms'. Only 8.7% reported the complete absence of symptoms during the previous year, and 18.8, 30.7, and 47.4%, respectively, described at least one hospital admission, emergency room visit, or nonscheduled visit because of UC activity. Urgency of defecation was the most disruptive symptom. The most important therapy attribute was continuous control of symptoms (44.6%). Most patients (78.8%) were 'very satisfied' or 'satisfied' with current treatment, even those reporting a high burden of symptoms. CONCLUSION: Half of the patients considered their UC as 'controlled or nearly controlled' and the degree of satisfaction with their therapies was high. However, they reported a high burden of symptoms and resource consumption during the previous year. These findings indicate that patients may get used to living with symptoms, underestimating the potential of therapy for achieving a complete remission. Urgency of defecation was mentioned as highly disrupting and should probably be included in scores and patient-reported outcomes.

Diagnostic Performance of the Simple Clinical Colitis Activity Index Self-Administered Online at Home by Patients With Ulcerative Colitis: CRONICA-UC Study.

OBJECTIVES: New e-health technologies can improve patient-physician communication and contribute to optimal patient care. We compared the diagnostic performance of the Simple Clinical Colitis Activity Index (SCCAI) self-administered by patients with ulcerative colitis (UC) at home (through a website) with the in-clinic gastroenterologist-assessed SCCAI. METHODS: Patients were followed-up over 6 months. At months 3 and 6, patients completed the SCCAI online at home; within 48 h, gastroenterologists (blinded to patients' scores) completed the in-clinic SCCAI (reference). SCCAI scores were dichotomized to remission or active disease, and SCCAI changes in disease activity from month 3 to 6 were classed as worsening, stability, or improvement. RESULTS: A total of 199 patients (median age: 38 years; 56% female) contributed with 340 pairs of questionnaires. Correlation of SCCAI scores by patients and physicians was good (Spearman's ρ=0.79), with 85% agreement for remission or activity (95% CI: 80.8-88.6, κ=0.66). The negative predictive value for active disease was 94.5% (91.4-96.6); the positive predictive value was 68.0% (58.8-69.2). Agreement between patient and physician was higher in the 168 month 6 pairs than in the 172 month 3 pairs of questionnaires (89.3% (83.6-93.1) vs. 80.8% (74.2-86.0), P=0.027). CONCLUSIONS: In patients with UC, SCCAI self-administration via an online tool resulted in a high percentage of agreement with evaluation by gastroenterologists, with a remarkably high negative predictive value for disease activity. Remote monitoring of UC patients is possible and might reduce hospital visits.