Salud mental en cuidadores de pacientes pediátricos con enfermedades crónicas en República Dominicana / Caregivers' mental health of pediatric patients with chronic health diseases in the Dominican Republic

Introducción: La enfermedad crónica infantil se refiere a condiciones en pacientes pediátricos que generalmente son de duración prolongada, no se resuelven por sí solas, y están asociadas con deficiencia o discapacidad. Esta condición usualmente afecta las actividades normales del niño y requiere hospitalizaciones frecuentes, atención médica domiciliaria y/o atención médica extensa, lo que suele afectar además de quien lo padece a sus cuidadores, quienes con frecuencia presentan características asociadas a estrés y agotamiento llegando a provocar enfermedades físicas y mentales como parte del "síndrome de sobrecarga del cuidador". Metodología: Se realizó una encuesta a cuidadores de pacientes pediátricos del Hospital Pediátrico Doctor Hugo Mendoza, el instrumento de recolección incluye 9 ítems que evalúa la presencia y gravedad de síntomas depresivos en las últimas 2 semanas previas a la entrevista, y los datos fueron analizados en el Programa estadístico SPSS. El estudio contó con la aprobación del comité de ética institucional del Hospital y los participantes otorgaron su consentimiento voluntario explícito antes de la recopilación de datos. Resultados: Al aplicar la clasificación de la escala del BAI, se evidencia que, del total de cuidadores encuestados, el 76.7% parecía sufrir de ansiedad muy baja, un 20.9% de ansiedad moderada y 2.3% de ansiedad severa. Se aplicó la la escala PHQ9, una escala que mide la presencia de síntomas depresivos y mostró que el 41.9 % presenta un nivel leve, 39.5% un nivel mínimo, 16.3% un nivel moderado y por último solo 2.3% un nivel moderado-grave de síntomas depresivos. Discusión: En nuestro estudio hubo igual distribución de hombres y de mujeres. Conclusión: El diagnóstico infantil no juega un papel determinante en la aparición de la ansiedad y la depresión.

Introduction: Chronic childhood disease refers to conditions in pediatric patients that are generally of prolonged duration, do not resolve on their own, and are associated with deficiency or disability. This condition normally affects the normal activities of the child and requires frequent hospitalizations, home health care and/or extensive medical care, which will affect, in addition to those who will usually suffer from it, their caregivers, who often have characteristics associated with stress and exhaustion, reaching causing physical and mental illness as part of "caregiver overload syndrome". Methodology: A survey was conducted on caregivers of pediatric patients at the Doctor Hugo Mendoza Pediatric Hospital, the collection instrument includes 9 items that assess the presence and severity of depressive symptoms in the last 2 weeks prior to the interview, and the data were analyzed in the statistical program SPSS. The study was approved by the institutional ethics committee of the Hospital and the participants gave their explicit voluntary consent before data collection. Results: When applying the classification of the BAI scale, it is evident that, of the total number of caregivers surveyed, 76.7% seemed to suffer from very low anxiety, 20.9% from moderate anxiety and 2.3% from severe anxiety. The PHQ9 scale was applied, a scale that measures the presence of depressive symptoms and showed that 41.9% present a mild level, 39.5% a minimum level, 16.3% a moderate level and finally only 2.3% a moderate-severe level of depressive symptoms. Discussion: In our study there was equal distribution of men and women. Conclusion: Childhood diagnosis does not play a determining role in the appearance of anxiety and depression.

Patient engagement in fertility research: bench research, ethics, and social justice.

BACKGROUND: Patient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with researchers throughout various stages of their projects. Recently, two researchers presented to the PES for assistance with their project, Embryo+™. The purpose of Embryo+™ is to decrease miscarriage rates using RNA sequencing technology that screens for the most viable embryos. To date, no examples of PPI directly in the planning or implementation of bench research concerning in vitro fertilization and embryo transfer have been identified. MAIN BODY: Embryo+™ researchers met in-person with the PES two times (fall 2019; each meeting had 9 PES members in attendance) for initial feedback and protocol development. After these meetings, PES leadership and Embryo+™ researchers decided that the unique nature of the project merited a PPI evaluation. Subsequent evaluation of engagement efforts occurred by reviewing the PES reports for the Embryo+™ researchers, conducting two recorded web-based discussion meetings with the PES (summer 2020; meeting 1 n = 7; meeting 2 n = 6), and a brief survey (n = 13). The discussion meetings provided an opportunity for the PES members to define engagement themes through consensus via verbal agreement to the studio director's periodic summaries during the discussions. Combining survey results and PES themes allowed for a broad discussion for meaningful engagement. The Embryo+™ researchers established trust with the patients by changing some of their language in response to patient suggestions, allowing for unintended ethical conversations, and implementing the patient developed protocols. Overall, the patient experts thought this project was very meaningful and valuable, quantified by a mean loyalty score 89.43 (s.d. 10.29). CONCLUSION: Bench science researchers may need additional PPI training prior to engaging with patient groups. PPI in this project was successful in large part due to this training, where the director emphasized the importance of gaining trust with the patients. The researchers applied what they learned and several examples of how to develop trust with patients are discussed. If trust is established, PPI in an ethically charged, basic science research study can be both valuable and successful.

Patients are increasingly becoming involved in all stages of the research process. Patient and public involvement has been shown to answer questions that matter to patients, increase enrollment in studies, and improve the spread of research results to the public. However, there are limited evaluations of patient engagement in basic science research (research performed in a laboratory setting in various fields). Here, we provide an example of patients effectively involved in the planning and implementation of an ethically complex study in the field of Assistive Reproductive Technology. A Patient Engagement Studio, affiliated with an academic health center, directly connects patients and researchers through bi-monthly meetings. Recently, two researchers presented their project, Embryo+™, to the studio during the planning stage of their study. This project aims to use a new testing technology to reduce miscarriage rates. The researchers presented to the studio twice (fall 2019), and two follow-up meetings were conducted with the patients (summer 2020). Also, the patients completed a survey evaluating how engaged they felt with the project. Through the meetings, the researchers changed their language in response to patient feedback, and patients developed project protocols. Survey results showed that the patients thought this project was very meaningful and valuable. Overall, this evaluation shows that patients can add value to contentious bench science projects, particularly in the field of Assistive Reproductive Technology.

The Role of Botulinum Toxin Injections for Esophageal Motility Disorders.

PURPOSE OF REVIEW: The advancement of high-resolution esophageal manometry has led to improvement in the diagnosis of esophageal motility disorders. We reviewed the recent medical literature regarding the use of botulinum toxin (BTx) injections in the esophagus and the indications, current outcomes, and reported complications of this therapy. RECENT FINDINGS: The response rates of BTx injection therapy vary depending on the esophageal motility disorder. Studies have shown that response is transient in achalasia patients and given the more effective therapies available, it is only recommended in patients who are not surgical candidates. In nonachalasia patients, studies of BTx injections have demonstrated improvement in dysphagia symptoms in patients with spastic disorders, though studies are small and largely retrospective. The available literature showed a variable response to BTx in esophagogastric junction outlet obstruction (EGJOO) and non-cardiac chest pain patients. Despite advances in diagnosing esophageal motility disorders, there is a need for further research in patient selection for esophageal BTx, dose and injection location, and disease-specific outcomes. Placebo-controlled trials are crucial to evaluate BTx efficacy and duration of response. Esophageal-directed BTx injections are beneficial in improving dysphagia in spastic motility disorders and in achalasia patients who are elderly or have multiple co-morbidities. There is a lack of evidence to support use in patients with EGJOO and non-cardiac chest pain, or for young or healthy achalasia patients.

A large multicenter study of recurrence after surgical resection of branch-duct intraductal papillary mucinous neoplasm of the pancreas.

BACKGROUND: Surgery for pancreatic branch-duct intraductal papillary mucinous neoplasm (BD-IPMN) is indicated for therapy of symptomatic patients and to prevent development of invasive cancer. There is currently no consensus on management of BD-IPMN patients after surgical resection. The aim of this retrospective multicenter study was to determine the recurrence and long-term survival after surgical resection of BD-IPMN and to determine the predictive factors of recurrence. METHODS: All patients who underwent surgery for BD-IPMN from 2005 to 2011 at 2 centers were identified. The diagnosis of BD-IPMN was based upon imaging and endosonographic analysis, and was confirmed by pathological analysis. The lesions were classified into 4 categories according to the WHO classification. Data on cyst characteristics, operative procedure, recurrence, and follow-up were evaluated. Recurrence was defined as the presence of BD-IPMN or mass in the remnant pancreas after surgery as seen on follow-up imaging. Recurrence suspected on imaging was confirmed via histological analysis when possible. RESULTS: A number of 271 patients (67% female; mean age 63.4 yrs) with BD-IPMN underwent surgical resection. The mean size of the cyst was 24.2mm (range, 12-80). There were 34 (12.5%) patients with an associated mass. 82 (30.3%) patients had worrisome features in the cyst on pre-operative EUS, included mural nodules (N.=25), solid component (N.=27), debris (N.=25), and a dilated major pancreatic duct (N.=5). 144(53%) patients had a pancreaticoduodenectomy for head lesions, 125 (46%) had distal pancreatectomy for tail/body lesions, and 1 (1%) underwent a total pancreatectomy. Histology showed 86% with noninvasive IPMN (adenoma 31%, moderate dysplasia 24%, severe dysplasia or carcinoma in situ 31%) and 14% with invasive IPMN. The mean patient follow-up was 28 months (range, 10-180 months). Recurrence in the remnant pancreas occurred in 34 (12.5%) patients. Of the patients with recurrence, 3/34 had invasive carcinoma and 31/34 had noninvasive cystic lesions; all patients with invasive carcinoma recurrence were those with a previous invasive IPMN. On MVA, risk factors for cyst recurrence were severe dysplasia/intraductal carcinoma in situ and invasive IPMN even after adjusting for elevated CEA (>193 ng/mL), type of surgery, and cyst size (OR 2.8, 95% CI=1.1-7.3; P=0.028). 3 patients who had invasive IPMN and 1 who had severe dysplasia patient with recurrence died, all because of recurrent cancer, with the mean time from recurrence to death being 36 months. CONCLUSIONS: The risk of BD-IPMN recurrence after resection depends upon the histological type, with the highest-risk groups being those with severe dysplasia/intraductal carcinoma in situ and invasive IPMN. Even after negative resection margins, the pancreatic remnant still harbors a risk of recurrence which requires long-term surveillance.