Spanish Pediatric Inflammatory Bowel Disease Diagnostic Delay Registry: SPIDER Study From Sociedad Española de Gastroenterología, Hepatología y Nutrición Pediátrica

Treviño, Santiago Jiménez; Muncunill, Gemma Pujol; Martín-Masot, Rafael; Martínez, Alejandro Rodríguez; Segarra, Óscar; Quintana, Luis Peña; Ramos, Honorio Armas; Arocena, Francisco Javier Eizaguirre; Torres, Josefa Barrio; Burriel, Jose Ignacio García; Castillo, Luis Ortigosa del; Aliaga, Ester Donat; Martínez, Vanesa Crujeiras; García, Patricia Barros; Arcos, Gonzalo Botija; Porro, J.; Ruíz, Mercedes Juste; Sangrador, Carlos Ochoa; Casales, Zuriñe García; Poblet, Gonzalo Galicia; Goicolea, Pablo Oliver; Garrido, H; Romero, Ruth García; Izquierdo, Enrique; Solís, David Pérez; Navas-López, Víctor Manuel; Martín, Juan José Díaz; Carpi, Javier Martín de

doi:10.3389/fped.2020.584278

Cited by 11 publications

(18 citation statements)

References 29 publications

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“…However, two other paediatric studies from Saudi Arabia and New Zealand reported substantially longer total DD with medians of two years and 8.4 months [ 28 , 29 ]. In contrast, specialist delays in the current study were considerably shorter than those described in a Spanish paediatric study by Jiménez et al [ 10 ]. The pre-specialist delay of 15.3 months exceeds the findings in another paediatric report from Saudi Arabia of 8 months for CD and 5 months for UC [ 30 ].…”

Section: Discussioncontrasting

confidence: 93%

“…The length of total DD outlined in the current study exceeds delays from some previously published work, where median total DD was reported to be between 3 months and 4.5 months [ 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 27 ]. These articles all focused on paediatric patients in Western Europe except two that where from Canada [ 7 ] and Israel [ 11 ].…”

Section: Discussioncontrasting

confidence: 49%

“…Some studies have found that as many as ~20% of children are diagnosed 12 months or more after their symptoms first appear [ 4 , 7 ]. Similarly, other investigations found median delays between 2 months and 4.5 months, [ 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 ], while two additional reports [ 15 , 16 ] demonstrated delays as medians of over 8 months.…”

Section: Introductionsupporting

confidence: 51%

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Diagnostic Delay in Paediatric Inflammatory Bowel Disease—A Systematic Investigation

Khalilipour

Day

Kenrick

et al. 2022

JCM

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Diagnostic delays (time from the first symptoms to diagnosis) are common in inflammatory bowel disease (IBD) and may lead to worse disease progression and treatment outcomes. This study aimed to determine the duration of diagnostic delays (DD) and to explore associated factors in a cohort of children with IBD in New Zealand. In this study, patients with IBD diagnosed as children and their parents/caregivers completed questionnaires on the patients’ medical history, diagnostic experience, and demographic characteristics. The parent/caregiver questionnaire also included the Barriers to Care Questionnaire (BCQ). Patients’ healthcare data was reviewed to summarise the history of clinical visits and determine symptoms. Total DD, healthcare DD, patient DD and parent DD were derived from the primary dataset. Factors associated with the different types of DD were explored with a series of simple linear and logistical ordinal regressions. A total of 36 patients (Crohn’s disease 25, ulcerative colitis 10; male 17) were included. They were diagnosed at a median age of 12 years (interquartile range (IQR) 10–15 years). Total healthcare delay (from first healthcare visit to formal diagnosis) was median (IQR) 15.4 (6.5–34.2) months. The median (IQR) specialist-associated delay was 4.5 (0–34) days. Higher household income was associated with shorter healthcare delay (p < 0.018), while lower overall BCQ scores (indicating more barriers experienced) were associated with longer total healthcare DD. Higher scores in each subscale of BCQ (Skills; Pragmatics; Expectations; Marginalization; Knowledge and Beliefs) were also significantly associated with shorter total healthcare delay (p < 0.04). This study found substantial diagnostic delays in paediatric patients with IBD and identified significant associations between longer total healthcare diagnostic delays and overall household income and higher self-reported barriers to accessing healthcare.

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Section: Discussioncontrasting

confidence: 93%

Section: Discussioncontrasting

confidence: 49%

Section: Introductionsupporting

confidence: 51%

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Diagnostic Delay in Paediatric Inflammatory Bowel Disease—A Systematic Investigation

Khalilipour

Day

Kenrick

et al. 2022

JCM

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“…We defined diagnostic delay as the time between the first symptoms suggestive of IBD (eg, abdominal pain, weight loss, diarrhea as described in medical records) to the date of diagnostic endoscopy. 27 , 28 …”

Section: Methodsmentioning

confidence: 99%

Identification of Childhood-Onset Inflammatory Bowel Disease in Swedish Healthcare Registers: A Validation Study

Mouratidou¹,

Malmborg²,

Järås³

et al. 2022

CLEP

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“…IBD has complex nature and its etiopathogenesis is only partly revealed, with special attention put recently on environmental triggers and gut microbiota [ 3 ]. Despite the huge progress in the diagnostic techniques, the time from the first symptoms to final diagnosis remains long, which can negatively influence the disease outcome [ 4 , 5 ]. There is no single “golden diagnostic test” available and the establishment of IBD diagnosis relies on the combination of clinical symptoms, endoscopic, and histopathological findings, supported by imaging and laboratory tests.…”

Section: Introductionmentioning

confidence: 99%

Emerging Comorbidities in Inflammatory Bowel Disease: Eating Disorders, Alcohol and Narcotics Misuse

Kuźnicki

Neubauer

2021

JCM

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Inflammatory bowel disease (IBD) is a chronic and potentially devastating condition of the digestive tract which is exemplified by increasing prevalence worldwide, byzantine pathogenesis with a poorly defined role of the environmental factors, and complex clinical demonstration. As a systemic disease, IBD may progress with a wide spectrum of extraintestinal manifestations (EMs) and comorbidities affecting different organs and systems, from anaemia, undernutrition, and cancer to those which are often neglected like anxiety and depression. Evolving IBD epidemiology and changing environment are reflected by an expanding list of IBD-related comorbidities. In contrast to the well-established role of smoking the connection between alcohol and IBD is still debatable on many levels, from pathogenesis to complications. Furthermore, little is known about narcotics use in IBD patients, even if there are obvious factors that may predispose them to narcotics as well as alcohol misuse. Last but not least, the question arises what is the prevalence of eating disorders in IBD. In our paper, we aimed to discuss the current knowledge on alcohol and drugs misuse and eating disorders as emerging extraintestinal comorbidities in IBD.

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Spanish Pediatric Inflammatory Bowel Disease Diagnostic Delay Registry: SPIDER Study From Sociedad Española de Gastroenterología, Hepatología y Nutrición Pediátrica

Cited by 11 publications

References 29 publications

Diagnostic Delay in Paediatric Inflammatory Bowel Disease—A Systematic Investigation

Diagnostic Delay in Paediatric Inflammatory Bowel Disease—A Systematic Investigation

Identification of Childhood-Onset Inflammatory Bowel Disease in Swedish Healthcare Registers: A Validation Study

Emerging Comorbidities in Inflammatory Bowel Disease: Eating Disorders, Alcohol and Narcotics Misuse

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