Dataset Information

Spanish Pediatric Inflammatory Bowel Disease Diagnostic Delay Registry: SPIDER Study From Sociedad Espanola de Gastroenterologia, Hepatologia y Nutricion Pediatrica.

ABSTRACT: Background and Aims: Diagnostic delay (DD) is especially relevant in children with inflammatory bowel disease, leading to potential complications. We examined the intervals and factors for DD in the pediatric population of Spain. Methods: We conducted a multicentric prospective study, including 149 pediatric inflammatory bowel disease patients, obtaining clinical, anthropometric, and biochemical data. Time to diagnosis (TD) was divided into several intervals to identify those where the DD was longer and find the variables that prolonged those intervals. Missed opportunities for diagnosis (MODs) were also identified. Results: Overall TD was 4.4 months (interquartile range [IQR] 2.6-10.4), being significantly higher in Crohn's disease (CD) than in ulcerative colitis (UC) (6.3 [IQR 3.3-12.3] vs. 3 [IQR 1.6-5.6] months, p = 0.0001). Time from the visit to the first physician until referral to a pediatric gastroenterologist was the main contributor to TD (2.4 months [IQR 1.03-7.17] in CD vs. 0.83 months [IQR 0.30-2.50] in UC, p = 0.0001). One hundred and ten patients (78.3%) visited more than one physician (29.9% to 4 or more), and 16.3% visited the same physician more than six times before being assessed by the pediatric gastroenterologist. The number of MODs was significantly higher in CD than that in UC patients: 4 MODs (IQR 2-7) vs. 2 MODs ([IQR 1-5], p = 0.003). Referral by pediatricians from hospital care allowed earlier IBD diagnosis (odds ratio 3.2 [95% confidence interval 1.1-8.9], p = 0.025). Conclusions: TD and DD were significantly higher in CD than those in UC. IBD patients (especially those with CD) undergo a large number of medical visits until the final diagnosis.

SUBMITTER: Jimenez Trevino S

PROVIDER: S-EPMC7593447 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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

Jiménez Treviño Santiago S Pujol Muncunill Gemma G Martín-Masot Rafael R Rodríguez Martínez Alejandro A Segarra Cantón Oscar O Peña Quintana Luis L Armas Ramos Honorio H Eizaguirre Arocena Francisco Javier FJ Barrio Torres Josefa J García Burriel José Ignacio JI Ortigosa Castillo Luis L Donat Aliaga Ester E Crujeiras Martínez Vanesa V Barros García Patricia P Botija Arcos Gonzalo G Bartolomé Porro Juan Manuel JM Juste Ruiz Mercedes M Ochoa Sangrador Carlos C García Casales Zuriñe Z Galicia Poblet Gonzalo G Oliver Goicolea Pablo P Lorenzo Garrido Helena H García Romero Ruth R La Orden Izquierdo Enrique E Pérez Solis David D Navas-López Víctor Manuel VM Díaz Martin Juan José JJ Martín de Carpi Javier J

Frontiers in pediatrics 20201015

<b>Background and Aims:</b> Diagnostic delay (DD) is especially relevant in children with inflammatory bowel disease, leading to potential complications. We examined the intervals and factors for DD in the pediatric population of Spain. <b>Methods:</b> We conducted a multicentric prospective study, including 149 pediatric inflammatory bowel disease patients, obtaining clinical, anthropometric, and biochemical data. Time to diagnosis (TD) was divided into several intervals to identify those where ...[more]

PMID: 33178654

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Project description:Patient activation is an important consideration for improved health outcomes in the management of chronic diseases. Limited English proficiency among patients and primary care providers has been shown to be a predictor for worse health across disease states. We aimed to determine the baseline patient activation measure (PAM) among Spanish-speaking (SP) and English-speaking (ES) pediatric patients with IBD and parents, and to describe the feasibility and efficacy of a novel peer-group education symposium designed to enhance patient activation as measured with the PAM.Two separate half-day educational symposia in either Spanish or English were presented and moderated by 2 native SP physicians. Content for each of the presentations were highly standardized and interactive, designed to address each of the activation domains (self-management, collaboration with a health care provider, maintenance of function and prevention of disease exacerbation, and appropriate access to high-quality care). Descriptive statistics were used to describe changes between pre- and postsymposium PAM trends.Eleven primarily SP and 21 ES families participated in their respective symposium. Paired pre- and post-PAM scores were available from 24 pediatric patients with IBD (8 SP, 16 ES) and 41 parents (15 SP, 26 ES). The mean age for SP and ES patients was 11.6 and 12.0 years, and female sex in 80% and 62%, respectively. Paired pre- and post-PAM scores for all participants (n?=?65) were analyzed. PAM scores uniformly increased in all 4 groups after the symposia (SP patients 59.1-70.3, P?=?0.05; SP parents 69.8-75.2, P?=?0.2; ES patients 59.9-64.0, P?=?0.08; ES parents 61.9-69.1, P?=?0.002), although only the ES-parents group had sufficient sample size (n?=?26) to achieve statistical significance. The overall cohort had an aggregate increase from pre-PAM of 62.9 (SD 14.5) to post-PAM of 69.4 (SD 13.9) (<0.001).We describe a novel peer-group educational symposium presented in Spanish and English languages to increase patient and parent activation in pediatric patients with IBD and their caregiving parents. The use of PAM to assess levels of activation appears to be feasible and effective in these groups.

Project description:BackgroundHypophosphatasia (HPP) is a rare, systemic disease caused by mutation(s) within the ALPL gene encoding tissue-nonspecific alkaline phosphatase (ALP). HPP has a heterogeneous presentation, which coupled with its rarity, often leads to missed/delayed diagnosis and an incomplete understanding of its natural history. To better understand the epidemiology and clinical course of HPP, including timing of diagnosis after first reported manifestation, we present baseline data for patients enrolled in the Global HPP Registry.MethodsData were analyzed from patients with an HPP diagnosis confirmed by low serum ALP activity and/or an ALPL pathogenic variant, regardless of prior or current treatment, according to age at enrollment (children: < 18 y; adult: ≥18 y). All analyses were descriptive.ResultsOf 269 patients from 11 countries enrolled January 2015-September 2017, 121 (45.0%) were children and 148 (55.0%) were adults. The majority of children and adults were female (61.2 and 73.0%, respectively) and white (57.7 and 90.0%, respectively). Children had a median (min, max) age at earliest reported HPP manifestation of 7.2 months (- 2.3 mo, 16.0 y), which was > 12 months before diagnosis at age 20.4 months (- 0.2 mo, 16.0 y). In adults, the earliest reported manifestation occurred at a median (min, max) age of 37.6 years (0.2 y, 75.2 y), which preceded age at diagnosis (47.5 years [0.2 y, 75.2 y]) by ~ 10 years. Premature loss of deciduous teeth (48.2%, age ≥ 6 mo), bone deformity (32.5%), and failure to thrive (26.7%) were most commonly reported in the HPP-related disease history of children. Pain (74.5%), orthopedic procedures and therapies (44.6%), and recurrent and poorly healing fractures (36.5%) were most commonly reported in the HPP-related disease history of adults.ConclusionsThe Global HPP Registry represents the largest observational study of patients with HPP, capturing real world data. This analysis shows that diagnostic delay is common, reflecting limited awareness of HPP, and that HPP is associated with systemic manifestations across all ages. Many patients diagnosed in adulthood had HPP manifestations in childhood, highlighting the importance of taking thorough medical histories to ensure timely diagnosis.Trial registrationClinicaltrials.gov : NCT02306720 , December 2014; ENCePP.eu: EUPAS13526 , May 2016 (retrospectively registered).

Dataset Information

Spanish Pediatric Inflammatory Bowel Disease Diagnostic Delay Registry: SPIDER Study From Sociedad Espanola de Gastroenterologia, Hepatologia y Nutricion Pediatrica.

Publications

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

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