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OBJECTIVES: The aim of the study was to evaluate integration of an eHealth solution, www.young.constant-care.com, into daily care (I-eHealth). METHODS: The I-eHealth solution was offered to inflammatory bowel disease (IBD) patients ages 10 to 17âyears old in nonbiological treatment. The application was used monthly and in case of flare-ups. Blood and fecal calprotectin (FC) were tested every 3 months and during flare-ups. A total inflammation score (based on symptoms and FC) was visualized for the patient in a traffic light curve. An IBD nurse followed up on the registrations every 2 weeks. Patients had 1 yearly planned visit at the hospital. On-demand visits were arranged depending on the total inflammation. I-eHealth results were compared with data from a previous randomized clinical trial (RCT)-eHealth study (the control group of which had 4 planned annual visits). RESULTS: Thirty-six IBD patients were followed by I-eHealth, mean age 14.7 years (SD 7.75). The median (interquartile range [IQR]) duration of using I-eHealth was 1.9âyears (0.29-2.51), equal to 66.11 patient-years, compared with 40.45 in the RCT-eHealth group and 46.49 in the RCT-control group. On-demand visits per patient-year did not differ between the groups: 1.13 (I-eHealth), 1.16 (RCT-eHealth), and 0.84 (RCT-control) (Pâ=â0.84/0.85). Hospitalizations and acute outpatient visits per patient-year did not differ between the groups: 0.11 and 0.11 (I-eHealth), 0.05 and 0.02 (RCT-eHealth), 0.11 and 0.11 (RCT-control) (Pâ=â0.17/0.81 and 0.12/0.81). Time to first escalation of medication, and time to first on-demand visit, did not differ between the I-eHealth group and data from the clinical trial (Log rank: Pâ=â0.25 and Pâ=â0.61). CONCLUSIONS: I-eHealth is comparably with results from eHealth under RCT supervision.
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Doenças Inflamatórias Intestinais , Telemedicina , Adolescente , Criança , Fezes , Seguimentos , Humanos , Doenças Inflamatórias Intestinais/terapia , Complexo Antígeno L1 LeucocitárioRESUMO
Background and aims: Despite promising results, only a few studies have been published on serum calprotectin as a biomarker in IBD. Recently, plasma measurements of calprotectin have been shown to be more reliable than serum measurements. In this study, we aim to assess plasma and serum calprotectin measurements as biomarkers of disease activity in paediatric and adult ulcerative colitis.Methods: Paediatric (5-18 years) and adult (>18 years) patients scheduled for colonoscopy due to suspected or confirmed ulcerative colitis were included prospectively. Stool and blood samples were collected at time of colonoscopy and patient symptom scores were recorded. At colonoscopy the Ulcerative Colitis Endoscopic Index of Severity was recorded. Histology was graded according to the Geboes score.Results: 84 patients where included; 30 paediatric and 54 adult patients. Plasma calprotectin had a stronger correlation to all outcome variables than serum calprotectin. Plasma calprotectin correlated positively to disease extent (Rho = 0.53, p < .0001), symptoms scores (Rho = 0.54, p = .002, only in the paediatric cohort), endoscopic scores (Rho = 0.39, p = .0003), histological scores (Rho 0.28, p = .01) and, when using endoscopic assessment of severity as reference, could discriminate active disease from patients in remission (p = .03).Conclusions: While more studies are needed to assess if plasma calprotectin can discriminate healthy individuals from ulcerative colitis, this study indicates that plasma calprotectin can be used as a biomarker of disease activity, especially in cases where faecal calprotectin measurements are cumbersome either due to patient compliance or logistical requirements.
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Colite Ulcerativa/diagnóstico , Colo/patologia , Complexo Antígeno L1 Leucocitário/sangue , Índice de Gravidade de Doença , Adolescente , Adulto , Biomarcadores/sangue , Estudos de Casos e Controles , Criança , Pré-Escolar , Colite Ulcerativa/sangue , Colite Ulcerativa/patologia , Colonoscopia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Sensibilidade e Especificidade , Adulto JovemRESUMO
OBJECTIVES: Fecal calprotectin (FC) is a well-integrated parameter in the monitoring of adolescent patients with inflammatory bowel disease (IBD). However, measurement of FC is limited by day-to-day-variation and by the feces consistency. Furthermore, adolescents are often noncompliant to deliver fecal sampling leading to suboptimal monitoring. Consequently, we see the need of a substitute biomarker whenever measurement of FC fails and aimed to investigate serum calprotectin (SC) in adolescents with IBD. METHODS: In cross sectional data from 19 ulcerative colitis (UC) patients <18 years old, a Spearman correlation was used to analyze the correlation between SC, FC, C-reactive protein (CRP) and endoscopic and symptom scores. In longitudinal data collected from 20 UC and Crohn disease (CD) patients (10-17 years old), Mixed Effect Models (MEM) were used to analyze the association between SC, FC, CRP, and symptom scores. RESULTS: We found positive correlations between SC (19 samples) and the endoscopic score, symptom score, and CRP (râ=â0.56, Pâ=â0.01; râ=â0.64, Pâ=â0.003; râ=â0.97, Pâ<â0.0001). We found no significant correlation between SC and FC. In 27 samples from UC patients, the association of SC with FC and CRP were positive and significant (Pâ=â0.004, estimateâ=â0.32; Pâ=â0.0001, estimateâ=â0.002). The association between SC and symptom score was insignificant. In 49 samples from CD patients, the association between SC and CRP was significant (Pâ=â0.02, estimateâ=â0.002) whereas associations between SC and FC and symptom score were insignificant. CONCLUSIONS: In the current pilot study, we found a correlation between SC and the endoscopically assessed inflammation in UC. SC may have the potential to improve disease monitoring of adolescent patients.
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Colite Ulcerativa/sangue , Doença de Crohn/sangue , Doenças Inflamatórias Intestinais/sangue , Complexo Antígeno L1 Leucocitário/sangue , Adolescente , Biomarcadores/sangue , Proteína C-Reativa/análise , Criança , Estudos Transversais , Endoscopia do Sistema Digestório/estatística & dados numéricos , Feminino , Humanos , Estudos Longitudinais , Masculino , Projetos Piloto , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Estatísticas não ParamétricasRESUMO
Parents of teens with inflammatory bowel disease must prepare their children for independent disease self-management. This study characterizes the stressors and coping strategies adopted among parents of teens with inflammatory bowel disease. Teens aged 16-22 years with inflammatory bowel disease who were consecutively seen by a pediatric gastroenterologist prior to transition to adult-centered care and their parents completed sociodemographic data, and two validated questionnaires for coping (Coping Health Inventory for Parents) and stress (Pediatric Inventory for Parents). Sixty-six patient-parent pairs were enrolled in this study-impairment was highest in role function (e.g., trying to attend to the needs of other family members, being unable to go to work, and feeling uncertain about how to maintain consistent discipline). These concerns seemed to be most pronounced among parents of children 18 years and older (χ (df) = 1, p = .04) with Crohn disease (χ (df) = 1, p = .02). The top five listed concerns differed depending on the caregiver's gender. Parents of teens with inflammatory bowel disease are concerned about parenting role function. Parents of teens 18 years and older with Crohn disease reported the highest stress. Caregiver gender differences were noted.
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Adaptação Psicológica , Cuidadores/psicologia , Doenças Inflamatórias Intestinais/enfermagem , Doenças Inflamatórias Intestinais/psicologia , Estresse Psicológico/epidemiologia , Inquéritos e Questionários , Adolescente , Adulto , Estudos de Coortes , Feminino , Seguimentos , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Relações Pais-Filho , Apoio Social , Estatísticas não Paramétricas , Estresse Psicológico/psicologia , Centros de Atenção Terciária , Estados Unidos , Adulto JovemRESUMO
BACKGROUND: Mucosal healing is proposed as treat-to-target in ulcerative colitis (UC), even though the definition of mucosal healing remains contested as it has been suggested to be assessed by either endoscopy, histology or both. However, all definitions require an endoscopic evaluation of the mucosa. As endoscopies are invasive and uncomfortable to the patient we aimed to calibrate noninvasive predictors of mucosal inflammatory status defined by both endoscopy and histology. METHODS: UC patients (n = 106) undergoing a sigmoid-/colonoscopy were prospectively included. Feces (fecal calprotectin, FC), blood samples (hemoglobin, C-reactive protein, orosomucoid, erythrocyte sedimentation rate, albumin) and symptom scores (Simple Clinical Colitis Activity Index, SSCAI) were collected and analyzed. The colonic mucosa was assessed by the Mayo endoscopic sub score and biopsies were obtained for a histologic grading by Geboes score. Predictive cutoff values were analyzed by receiver operating characteristics (ROC). A combined endoscopic and histologic assessment defined deep remission (Mayo =0 and Geboes ≤1) and activity (Mayo ≥2 and Geboes >3). RESULTS: Only FC showed a significant ROC curve (p < .05). We suggest FC (mg/kg) cutoffs for detection of following: Deep remission: FC ≤25; Indeterminate: FC 25-230 - an endoscopy is recommended if a comprehensive status of both endoscopic and histologic assessed activity is needed; Active disease: FC >230. The complete ROC data is presented, enabling extraction of an FC cutoff value's sensitivity and specificity. CONCLUSIONS: FC predicts endoscopic and histologic assessed deep remission and inflammatory activity of colon mucosa. Neither the markers in blood nor the SCCAI performed significant ROC results.
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Colite Ulcerativa/diagnóstico , Mucosa Intestinal/patologia , Complexo Antígeno L1 Leucocitário/análise , Adulto , Biomarcadores/análise , Proteína C-Reativa/metabolismo , Colite Ulcerativa/patologia , Colonoscopia , Dinamarca , Fezes/química , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Estudos Prospectivos , Curva ROC , Indução de Remissão , Índice de Gravidade de DoençaRESUMO
Health-care systems around the world are facing increasing costs. Non-adherent, chronically ill patients are one such expense incurred by health-care providers. Web-based home-monitoring of patients-or eHealth-has been shown to increase adherence to medical therapy, facilitate contact between patients and health-care professionals, and reduce time to remission for patients with inflammatory bowel disease (IBD). Web-based treatment is a supportive tool for the health-care provider in an out-patient clinic. eHealth web-programs, such as the Constant Care application, visualize disease activity in a traffic light system and empower patients to screen for disease activity, enabling them to respond appropriately to their symptoms. The eHealth screening procedure for monitoring both pediatric and adult IBD patients is based on a self-obtained symptom score, together with a fecal biomarker for inflammation (fecal calprotectin) that the patients can measure independently using their smart phone, providing both patient and physician with an immediate disease status that they can react to instantaneously. Likewise, web applications for IBD patients, web applications for irritable bowel syndrome (IBS) patients and also IBD patients with co-existing IBS, have proven valuable for monitoring and treating IBS symptoms with a diet low in fermentable oligo-, di-, monosaccharides and polyols (low-FODMAP diet). With careful disease monitoring via the web application and increased patient adherence, eHealth might be capable of improving the natural disease course of IBD and IBS.
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Atenção à Saúde/métodos , Doenças Inflamatórias Intestinais/terapia , Internet , Síndrome do Intestino Irritável/terapia , Monitorização Fisiológica/métodos , Atenção à Saúde/economia , Dieta com Restrição de Carboidratos , Dissacarídeos/administração & dosagem , Dissacarídeos/efeitos adversos , Pessoal de Saúde , Monossacarídeos/administração & dosagem , Monossacarídeos/efeitos adversos , Oligossacarídeos/administração & dosagem , Oligossacarídeos/efeitos adversos , Cooperação do Paciente , Polímeros/administração & dosagem , Polímeros/efeitos adversosRESUMO
OBJECTIVES: Our aim was to investigate predictors of health-related quality of life (HRQoL) with respect to changes in disease parameters over time in children with inflammatory bowel disease. METHODS: This was a prospective longitudinal study examining the association between HRQoL (IMPACT III) and symptom scores (Pediatric Crohn Disease Activity Index, abbreviated Pediatric Ulcerative Colitis Activity Index), fecal calprotectin measures and blood analyses (C-reactive protein, erythrocyte sedimentation rate, orosomucoid, albumin, hemoglobin, and vitamin-D) in a cohort of 10- to 17-year-old patients with inflammatory bowel disease. Data were collected prospectively at 3-month intervals during a 2-year period. Associations were analyzed using linear mixed-effect models. Patients were divided into 2 groups, which received nonbiological oral treatment or biological parenteral treatment. RESULTS: From 79 patients (39 Crohn disease/40 ulcerative colitis), representing a total of 43,132 days of observation, 572 IMPACT measurements were paired with variables. A decrease in the IMPACT III score was significantly associated with increased ulcerative colitis-symptom score in the biological group (Pâ=â0.005), and a similar inverse tendency was found in the nonbiological group and for Crohn disease symptoms in both groups. We found in both treatment groups overall a significant (Pâ<â0.05) inverse association between the IMPACT III and the levels of fecal calprotectin, erythrocyte sedimentation rate, and orosomucoid, whereas albumin, hemoglobin, and vitamin-D were directly significantly associated. CONCLUSIONS: The IMPACT score, already known to correlate with disease activity, has now been shown to be associated with disease markers in feces and blood. This emphasizes that objective markers of disease activity indirectly can predict the patient's HRQoL.
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Colite Ulcerativa/diagnóstico , Doença de Crohn/diagnóstico , Fezes/química , Complexo Antígeno L1 Leucocitário/metabolismo , Qualidade de Vida , Índice de Gravidade de Doença , Adolescente , Anti-Inflamatórios/uso terapêutico , Biomarcadores/metabolismo , Criança , Colite Ulcerativa/tratamento farmacológico , Colite Ulcerativa/metabolismo , Doença de Crohn/tratamento farmacológico , Doença de Crohn/metabolismo , Feminino , Fármacos Gastrointestinais/uso terapêutico , Humanos , Estudos Longitudinais , Masculino , Estudos ProspectivosRESUMO
OBJECTIVES: To investigate the frequency of psychiatric disorders before and after onset of paediatric-onset immune-mediated inflammatory diseases (pIMID). STUDY DESIGN: In a nationwide study from 1996 to 2018, we investigated psychiatric disorders in patients with paediatric-onset inflammatory bowel diseases, autoimmune liver diseases and rheumatic diseases, using Danish national healthcare and population registers. Each case was matched with up to 10 controls from the background population. The cumulative incidence for psychiatric disorders prior to pIMID onset in patients was compared with controls. Cox proportional regression was used to estimate adjusted HRs (aHR) with a 95% CI between cases and controls after the index date. RESULTS: We included 11 208 cases (57% female) and 98 387 controls. The median age at disease onset was 12.5 years (IQR 8-15) and follow-up time 9.8 years (IQR 5-15). We found an association between psychiatric disorders before index date and a diagnosis of subsequent pIMID (OR 1.3, 95% CI 1.2 to 1.4). Notably, after index date, cases also had an increased risk (aHR 1.6, 95% CI 1.5 to 1.7) of psychiatric disorders compared with controls. This risk was increased for all groups of psychiatric disorders. Female patients had an increased risk of suicide attempt after index date (aHR 1.4, 95% CI 1.1 to 1.8). CONCLUSION: Patients with pIMID are at increased risk for a broad spectrum of psychiatric disorders both before and after onset of pIMID. The results support the need for awareness of psychiatric morbidity in this young patient group and the need for coordinated healthcare for those with comorbid states.
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Transtornos Mentais , Criança , Humanos , Feminino , Masculino , Estudos de Coortes , Transtornos Mentais/etiologia , Tentativa de Suicídio , Comorbidade , Dinamarca/epidemiologia , Fatores de RiscoRESUMO
Our aim was to describe the challenges of the transition process of adolescents with inflammatory bowel disease (IBD), as seen from a pediatric-care perspective, to clarify the key obstacles and propose how to move forward. Semi-structured individual interviews of pediatric gastroenterologists and nurses were analyzed and interpreted according to the principles of social science. It is a challenge for the pediatric team to continuously match, support, and gently guide the ever-changing adolescent patient. All adolescent patients should be offered guidance regardless of their starting point, and specific individual needs should be taken into consideration. Adolescents burdened by psychosocial challenges require extra support. Early and continued interdisciplinary effort is essential. Collaboration with the parents must be continuously adapted to prepare them for their new roles and responsibilities. The shift from the pediatric family-focused approach to the individualistic approach of the Adult Gastroenterology Department signifies a fundamental change. Equipping adolescents with disease-management skills remains a comprehensive task. The following crucial questions remain: Who is capable of performing the transition? Who can dedicate the necessary resources for performing the transition? A transition center led by both pediatricians and adult gastroenterologists in an interdisciplinary setting that includes transition-trained persons may be the solution.
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Inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) are chronic relapsing diseases with major impact on the patients' everyday life, and increasing incidences affect the burden on the healthcare system. This review summarises the evidence of telemedicine applications (TA) to patients suffering from IBD and IBS in Denmark and abroad. TA have been shown to: reduce time-to-remission, increase quality of life and medical adherence, and reduce hospital admissions and outpatient visits in adult patients with IBD. In paediatric patients with IBD, TA have been shown to reduce: the need of outpatient visits, the number of school absences, and the symptom scores.
Assuntos
Colite , Doenças Inflamatórias Intestinais , Síndrome do Intestino Irritável , Telemedicina , Adulto , Criança , Humanos , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/tratamento farmacológico , Síndrome do Intestino Irritável/complicações , Síndrome do Intestino Irritável/diagnóstico , Qualidade de VidaRESUMO
BACKGROUND: Adult and pediatric care have different views and ways of handling the patients and the parents, which may result in insufficient coordination and communication of transfer. The young patient, the parents, the pediatric, and the adult provider constitute four central actors in transition and transfer, and they have different roles, approaches, and needs. Our aim was to clarify the challenges and background for each actor. MATERIALS AND METHODS: Statements from semistructured interviews of adult gastroenterologists and nurses were analyzed and interpreted by social scientific principles. The interviews were conducted individually, and each interview was completed within 30 min. The interviews were taped, transcribed, and sent to the interviewees for approval. RESULTS: The analysis of the statements included a description of the motives, perspectives, and approaches of the interviewees as well as an exploration and interpretation of the underlying meaning, patterns, and models. The main points of the article are illustrated through excerpts from the interviews and concluded in the recommendations. CONCLUSION: (I) Pediatricians and adult gastroenterologist need to rethink their view on patients aged 15-20 years and understand that they are different from other patients and do have different demands. (II) Transfer should be considered a three-part process: (a) transition at the pediatric department, (b) a coordinated transfer, and (c) a consolidation phase after transfer. (III) Adolescent patients need proper education and empowerment during transition. (IV) Parents need to be timely prepared including an adjustment and redefinition of their roles.
Assuntos
Atitude do Pessoal de Saúde , Gastroenterologistas/psicologia , Doenças Inflamatórias Intestinais/terapia , Transição para Assistência do Adulto/organização & administração , Adolescente , Serviços de Saúde do Adolescente/organização & administração , Atitude Frente a Saúde , Dinamarca , Humanos , Entrevistas como Assunto , Relações Pais-Filho , Poder Familiar , Adulto JovemRESUMO
BACKGROUND: Transfer from pediatric to adult care is a crucial period for adolescents with inflammatory bowel disease (IBD). OBJECTIVE: Our aim was to develop a personalized transition-transfer concept including relevant tools in an established eHealth (electronic health) program. METHODS: Required transition skills and validated patient-reported outcome measures (PROMs) were identified via bibliographic search and clinical experience and were implemented into an existing eHealth program. RESULTS: The following skills were identified: disease knowledge, social life, disease management, and making well-informed, health-related decisions. The PROMs included the following: self-efficacy (the IBD Self-Efficacy Scale-Adolescents), resilience (the 10-item Connor-Davidson Resilience Scale), response to stress (the Child Self-Report Responses to Stress-IBD), and self-management and health care transition skills (the Self-Management and Transition to Adulthood with Treatment questionnaire). Starting at age 14, the patient will be offered a 1-hour annual transition consultation with an IBD-specialized nurse. The consultation will be based on the results of the PROMs and will focus on the patient's difficulties. Patients will complete the PROMs on the eHealth program at home, allowing nurses and patients to prepare for the meeting. Symptom scores and medication will be filled out on the eHealth program to support disease self-management. The consultation will be a topic-centered dialogue with practical exercises. During routine outpatient visits with the provider, parents will be left out of half of the consultation when the patient is 16 years old; at 17 years old, the parents will not be present. At the transfer consultation, the pediatric provider, the adult gastroenterologist, the pediatric nurse, the patient, and the parents will be present to ensure a proper transfer. CONCLUSIONS: We have conducted a personalized eHealth transition concept consisting of basic elements that measure, train, and monitor the patients' transition readiness. The concept can be implemented and adjusted to local conditions.
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BACKGROUND: Fecal calprotectin is widely used to monitor disease activity in patients with inflammatory bowel disease. Multiple commercial kits exist, however, since the analyses are not standardized, these kits cannot be used interchangeably. We aimed to perform a technical evaluation of two kits (Calpro from Calprolab, Norway and Calprest from Eurospital, Italy) and perform a tuning for detection of clinically relevant disease states in ulcerative colitis. MATERIALS AND METHODS: For tuning against different clinical states a total of 116 patients with ulcerative colitis were recruited (67 of which were part of an earlier publication). For the technical evaluation an additional series of 80 random samples from the hospital lab were included. Technical evaluation was done by correlation and limits of agreement analysis; cut-off levels were explored by ROC analysis against clinically relevant actual states. RESULTS: The technical evaluation revealed good correlation between assays, however a non-linear difference was found: At values below 200 mg/kg, no significant bias was found; in the interval 200-1000 mg/kg the Calprest assay measured on average 30% lower than Calpro; and at higher values Calprest measured 60% higher values than Calpro. Both assays predicted Mayo endoscopic score (MES) 0 (cutoff 28: sensitivity 0.38; specificity 0.82 for Calprest; cutoff 28: sensitivity 0.50; specificity 0.77 for Calpro), and MES 2-3 (cutoff 148: sensitivity 0.72; specificity 0.80 for Calprest; cutoff 208: sensitivity 0.64; specificity 0.80 for Calpro), but did not predict normalization of mucosal TNF transcript per se. A combination of calprotectin and MES predicted mucosal TNF transcript values reasonably well (Calpro: sensitivity 0.85, specificity 0.58; Calprest: sensitivity 0.85, specificity 0.61). CONCLUSION: The Calpro and Calprest assays correlated well, but subtle differences were found, underlining the need for kit-specific cut-off values. Both kits were most precise in predicting active inflammation (MES 2-3), but less so for prediction of mucosal healing (MES 0) and normalization of mucosal TNF gene expression.
Assuntos
Testes de Química Clínica/métodos , Colite Ulcerativa/metabolismo , Endoscopia , Fezes/química , Mucosa Intestinal/metabolismo , Complexo Antígeno L1 Leucocitário/metabolismo , Fator de Necrose Tumoral alfa/metabolismo , Colite Ulcerativa/diagnóstico , Regulação da Expressão Gênica , Humanos , Curva ROCRESUMO
BACKGROUND: Serum vitamin D level is commonly low in patients with inflammatory bowel disease (IBD). Although there is a growing body of evidence that links low vitamin D level to certain aspects of IBD such as disease activity and quality of life, data on its prevalence and how it varies across disease phenotype, smoking status and treatment groups are still missing. MATERIALS AND METHODS: Patients diagnosed with IBD between 2010 and 2011 were recruited. Demographic data and serum vitamin D levels were collected. Variance of vitamin D level was then assessed across different treatment groups, disease phenotype, disease activity and quality of life scores. RESULTS: A total of 238 (55.9% male) patients were included. Overall, 79% of the patients had either insufficient or deficient levels of vitamin D at diagnosis. Patients needing corticosteroid treatment at 1 year had significantly lower vitamin D levels at diagnosis (median 36.0 nmol/l) (P=0.035). Harvey-Bradshaw Index (P=0.0001) and Simple Clinical Colitis Activity Index scores (P=0.0001) were significantly lower in patients with higher vitamin D level. Serum vitamin D level correlated significantly with SIBQ score (P=0.0001) and with multiple components of SF12. Smokers at diagnosis had the lowest vitamin D levels (vitamin D: 34 nmol/l; P=0.053). CONCLUSION: This study demonstrates the high prevalence of low vitamin D levels in treatment-naive European IBD populations. Furthermore, it demonstrates the presence of low vitamin D levels in patients with IBD who smoke.
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Doenças Inflamatórias Intestinais/epidemiologia , Deficiência de Vitamina D/epidemiologia , Adolescente , Corticosteroides/uso terapêutico , Adulto , Idoso , Idoso de 80 Anos ou mais , Anti-Inflamatórios/uso terapêutico , Biomarcadores/sangue , Criança , Europa (Continente)/epidemiologia , Feminino , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/tratamento farmacológico , Masculino , Pessoa de Meia-Idade , Prevalência , Qualidade de Vida , Fatores de Risco , Índice de Gravidade de Doença , Fumar/efeitos adversos , Fumar/sangue , Fumar/epidemiologia , Fatores de Tempo , Vitamina D/sangue , Deficiência de Vitamina D/sangue , Deficiência de Vitamina D/diagnóstico , Adulto JovemRESUMO
BACKGROUND: To evaluate the impact of eHealth on disease activity, the need for hospital contacts, and medical adherence in children and adolescents with inflammatory bowel disease (IBD). Furthermore, to assess eHealth's influence on school attendance and quality of life (QoL). METHODS: Patients with IBD, 10 to 17 years attending a public university hospital, were prospectively randomized to a 2-year open label case-controlled eHealth intervention. The eHealth-group used the web-application young.constant-care.com (YCC) on a monthly basis and in case of flare-ups, and were seen at one annual preplanned outpatient visit. The control-group continued standard visits every third month. Every 3 months, both groups had blood and fecal calprotectin tested and the following were assessed: escalation in medication, disease activity, hospital contacts, medical adherence, school absence, and QoL. RESULTS: Fifty-three patients in nonbiological treatment were included (27 eHealth/26 control). We found no differences between the groups regarding escalation in treatment and disease activity (symptoms, fecal calprotectin, and blood). The number of total outpatient visits (mean: eHealth 3.26, SEM 0.51; control 7.31, SEM 0.69; P < 0.0001) and IBD-related school absence (mean days: eHealth 1.6, SEM 0.5; control 16.5, SEM 4.4; P < 0.002) was significantly lower in the eHealth-group. No differences in medical adherence and QoL were found. Adherence to YCC was 81% (384 of the 475 expected entries). None of the patients or parents felt unsafe using the eHealth system. CONCLUSIONS: The use of eHealth in children and adolescents with IBD is feasible, does not lead to impaired disease control, and can be managed by the patients without risk of increased disease activity.
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Doenças Inflamatórias Intestinais/terapia , Monitorização Fisiológica/métodos , Autogestão/métodos , Telemedicina/métodos , Adolescente , Assistência Ambulatorial/estatística & dados numéricos , Estudos de Casos e Controles , Criança , Estudos de Viabilidade , Fezes/química , Feminino , Humanos , Doenças Inflamatórias Intestinais/metabolismo , Doenças Inflamatórias Intestinais/psicologia , Complexo Antígeno L1 Leucocitário/análise , Masculino , Adesão à Medicação/estatística & dados numéricos , Estudos Prospectivos , Qualidade de Vida , Instituições Acadêmicas/estatística & dados numéricosRESUMO
BACKGROUND: Adolescence is a vulnerable period for those afflicted with inflammatory bowel disease (IBD). There is limited knowledge of factors influencing transition readiness in this population. We sought to determine whether self-efficacy and resilience would be informative predictors of transition readiness independent of age. METHODS: Patients with IBD aged 16 to 23 years cared for in a pediatric setting were prospectively enrolled. On entry, patients filled out the Transition Readiness Assessment Questionnaire (TRAQ); IBD Self-Efficacy Scale-Adolescent (IBD-SES-A); and the Connor-Davidson Resilience Scale. Demographic data and disease-specific information were collected from the medical record and by the provider. General linear modeling and autocorrelation were performed to investigate predictors of transition readiness. RESULTS: Eighty-seven patients (62 Crohn's disease and 25 ulcerative colitis) were included, with a median age of 19 years (interquartile range 1-3: 17-20; min-max: 16-23). After controlling for age, the IBD-SES-A predicted TRAQ [F(1) = 11.69, R = 0.16, P = 0.001], accounting for 16% of the variance. The Connor-Davidson Resilience Scale also independently predicted TRAQ score [F(1) = 6.45, R = 0.09, P = 0.01], accounting for 9% of the variance. The IBD-SES-A and Connor-Davidson Resilience Scale were significantly auto correlated (r = 0.044, P = 0.001); in the final predictive model, only IBD-SES-A was predictive of TRAQ [F(1) = 4.01, R = 0.12, P = 0.004]. None of the patients' demographic, disease, or socioeconomic parameters informed transition readiness once self-efficacy and resilience were considered. CONCLUSIONS: This is the first study to identify a reliable predictor of transition readiness scores in adolescents with IBD that does not seem to be influenced by age.
Assuntos
Colite Ulcerativa/psicologia , Doença de Crohn/psicologia , Resiliência Psicológica , Autoeficácia , Transição para Assistência do Adulto , Adolescente , Feminino , Humanos , Modelos Lineares , Masculino , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: To individualize timing of infliximab (IFX) treatment in children and adolescents with inflammatory bowel disease (IBD) using a patient-managed eHealth program. METHODS: Patients with IBD, 10 to 17 years old, treated with IFX were prospectively included. Starting 4 weeks after their last infusion, patients reported a weekly symptom score and provided a stool sample for fecal calprotectin analysis. Based on symptom scores and fecal calprotectin results, the eHealth program calculated a total inflammation burden score that determined the timing of the next IFX infusion (4-12 wk after the previous infusion). Quality of Life was scored by IMPACT III. A control group was included to compare trough levels of IFX antibodies and concentrations and treatment intervals. Patients and their parents evaluated the eHealth program. RESULTS: There were 29 patients with IBD in the eHealth group and 21 patients with IBD in the control group. During the control period, 94 infusions were provided in the eHealth group (mean interval 9.5 wk; SD 2.3) versus 105 infusions in the control group (mean interval 6.9 wk; SD 1.4). Treatment intervals were longer in the eHealth group (P < 0.001). Quality of Life did not change during the study. Appearance of IFX antibodies did not differ between the 2 groups. Eighty percent of patients reported increased disease control and 63% (86% of parents) reported an improved knowledge of the disease. CONCLUSIONS: Self-managed, eHealth-individualized timing of IFX treatments, with treatment intervals of 4 to 12 weeks, was accompanied by no significant development of IFX antibodies. Patients reported better control and improved knowledge of their IBD.
Assuntos
Fármacos Gastrointestinais/administração & dosagem , Doenças Inflamatórias Intestinais/tratamento farmacológico , Infliximab/administração & dosagem , Autogestão/métodos , Telemedicina/métodos , Adolescente , Criança , Esquema de Medicação , Fezes/química , Feminino , Humanos , Doenças Inflamatórias Intestinais/metabolismo , Complexo Antígeno L1 Leucocitário/análise , Masculino , Medicina de Precisão , Estudos Prospectivos , Qualidade de Vida , Resultado do TratamentoRESUMO
BACKGROUND: This European Crohn's and Colitis Organisation [ECCO] topical review focuses on the transition of adolescents with inflammatory bowel disease [IBD] from child-centred to adult-oriented care. The aim was to provide evidence-supported, expert consensus for health professionals taking part in the transition. METHODS: An online survey determined the areas of importance for health professionals involved in the transition of adolescents with IBD. Thereafter an expert panel of nine paediatric and five adult gastroenterologists was formed to identify the critical elements of the transition programme, and to prepare core messages defined as 'current practice points'. There is limited literature about transition, therefore this review is mainly based on expert opinion and consensus, rather than on specific evidence. RESULTS: A total of 21 practice points were generated before the first [online] voting round. Practice points that reached >80% agreement were accepted, while those that did not reach 80% agreement were refined during a consensus meeting and subjected to voting. Ultimately, 14 practice points were retained by this review. CONCLUSION: We present a consensus-based framework for transitional care in IBD that provides a guidance for clinical practice.
Assuntos
Doenças Inflamatórias Intestinais/terapia , Transição para Assistência do Adulto , Cuidado Transicional , Adolescente , Adulto , Humanos , Avaliação de Resultados em Cuidados de SaúdeRESUMO
BACKGROUND AND AIMS: Anaemia is an important complication of inflammatory bowel disease [IBD]. The aim of this study was to determine the prevalence of anaemia and the practice of anaemia screening during the first year following diagnosis, in a European prospective population-based inception cohort. METHODS: Newly diagnosed IBD patients were included and followed prospectively for 1 year in 29 European and one Australian centre. Clinical data including demographics, medical therapy, surgery and blood samples were collected. Anaemia was defined according to the World Health Organization criteria. RESULTS: A total of 1871 patients (Crohn's disease [CD]: 686, 88%; ulcerative colitis [UC]: 1,021, 87%; IBD unclassified [IBDU] 164. 81%) were included in the study. The prevalence of anaemia was higher in CD than in UC patients and, overall, 49% of CD and 39% of UC patients experienced at least one instance of anaemia during the first 12 months after diagnosis. UC patients with more extensive disease and those from Eastern European countries, and CD patients with penetrating disease or colonic disease location, had higher risks of anaemia. CD and UC patients in need of none or only mild anti-inflammatory treatment had a lower risk of anaemia. In a significant proportion of patients, anaemia was not assessed until several months after diagnosis, and in almost half of all cases of anaemia a thorough work-up was not performed. CONCLUSIONS: Overall, 42% of patients had at least one instance of anaemia during the first year following diagnosis. Most patients were assessed for anaemia regularly; however, a full anaemia work-up was frequently neglected in this community setting.
Assuntos
Anemia/etiologia , Doenças Inflamatórias Intestinais/complicações , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Anemia/diagnóstico , Anemia/epidemiologia , Colite Ulcerativa/complicações , Doença de Crohn/complicações , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Adulto JovemRESUMO
BACKGROUND: Fecal calprotectin is a reliable noninvasive marker for intestinal inflammation usable for monitoring patients with inflammatory bowel disease. Tests are usually performed by enzyme-linked immunosorbent assay (ELISA), which is time consuming and delays results, thus limiting its use in clinical practice. Our aim was to evaluate CalproSmart, a new rapid test for fecal calprotectin performed by patients themselves at home, and compare it to gold standard ELISA. METHODS: A total of 221 patients with inflammatory bowel disease (115 ulcerative colitis and 106 Crohn's disease) were included. The CalproSmart test involves extraction of feces, application to the lateral flow device, and taking a picture with a smartphone after 10 minutes of incubation. Results appear on the screen within seconds. Patients were instructed at inclusion and had a video guide of the procedure as support. When using CalproSmart at home, patients also sent in 2 fecal samples to be analyzed by ELISA. RESULTS: Totally, 894 fecal calprotectin results were obtained by ELISA, and 632 of them from CalproSmart. The correlation coefficient was 0.685, higher for academics than nonacademics (0.768 versus 0.637; P = 0.0037). The intra-assay and interassay coefficients of variation of the CalproSmart test were 4.42% and 12.49%, respectively. The sensitivity, specificity, positive predictive value, and negative predictive value were 82%, 85%, 47%, and 97%, respectively, with an optimal cutoff at 150 µg/g. CONCLUSIONS: The CalproSmart test performed by patients with inflammatory bowel disease for fast assessment of gut inflammation seems a reliable alternative to ELISA and presents a new way of monitoring patients by eHealth.