RESUMEN
BACKGROUND AND AIM: Previous studies have shown a reduction of gastrointestinal symptoms in irritable bowel syndrome (IBS) patients following a low FODMAP diet (LFD). It remains unknown which disorders of gut-brain interaction (DGBI) patients would benefit most from LFD. We aimed to analyze LFD response regarding a preceding nutrient challenge test (NCT). METHODS: Data of 110 consecutive DGBI patients undergoing NCT and LFD between August 2015 and August 2018 were analyzed retrospectively. LFD response was assessed by changes in IBS Symptom Severity Score (IBS-SSS). In mixed-effects linear regression models, the impact of hydrogen values and abdominal symptoms during NCT, performed with 30-g lactulose and 400-mL liquid test meal, on IBS-SSS changes were analyzed. RESULTS: Low FODMAP diet induced a significant IBS-SSS reduction of 78 points (95% confidence interval [CI] 50-96; P < 0.001). Patients with higher NCT-induced hydrogen increase during proximal intestinal transit had a significantly better LFD response (-66 IBS-SSS reduction per 10-ppm hydrogen increase, 95% CI -129 to -4, P = 0.045). Additionally, the higher the NCT-induced maximum hydrogen increase during mid-distal and distal intestinal transit, the better are the responses to LFD (-6 IBS-SSS per 10-ppm maximum delta hydrogen, 95% CI -11 to -1, P = 0.040). There was no association of LFD response with abdominal symptom generation during NCT. CONCLUSIONS: Our study is the first one analyzing and demonstrating significant associations between NCT results and LFD response. These findings are of high clinical importance, as they identify a subgroup of DGBI patients that may profit most from a restrictive LFD as first-line therapy.
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Eje Cerebro-Intestino , Pruebas Respiratorias/métodos , Dieta Baja en Carbohidratos , Hidrógeno , Enfermedades Intestinales , Adolescente , Adulto , Anciano , Eje Cerebro-Intestino/fisiología , Dieta Baja en Carbohidratos/métodos , Dispepsia/diagnóstico , Dispepsia/metabolismo , Dispepsia/psicología , Dispepsia/terapia , Femenino , Fermentación/fisiología , Tránsito Gastrointestinal/fisiología , Humanos , Hidrógeno/análisis , Enfermedades Intestinales/diagnóstico , Enfermedades Intestinales/metabolismo , Enfermedades Intestinales/psicología , Enfermedades Intestinales/terapia , Intestinos/metabolismo , Intestinos/fisiopatología , Síndrome del Colon Irritable/diagnóstico , Síndrome del Colon Irritable/metabolismo , Síndrome del Colon Irritable/psicología , Síndrome del Colon Irritable/terapia , Masculino , Persona de Mediana Edad , Monosacáridos/efectos adversos , Monosacáridos/metabolismo , Nutrientes/efectos adversos , Oligosacáridos/efectos adversos , Oligosacáridos/metabolismo , Polímeros/efectos adversos , Polímeros/metabolismo , Estudios Retrospectivos , Adulto JovenRESUMEN
BACKGROUND & AIMS: People with type 3 intestinal failure require regular home parenteral support (HPS) for survival. Intestinal failure is a long term condition and HPS is a burdensome treatment so understanding quality of life (QoL) and how people live with HPS over time is essential. The aim of this review was to assess the impact of HPS on QoL in adults receiving HPS and their family members. METHODS: A systematic review (PROSPERO 2020 CRD42020166197) of the literature was performed using MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trails, PsycInfo, Web of Science and PROSPERO. Included articles were hand searched to identify any other relevant studies. Eligibility assessment was performed independently by two reviewers in an unblinded standardised manner. Quality was assessed using appropriate Joanna Briggs Institute critical appraisal tools. Data were extracted independently by two reviewers using predefined data fields. Certainty of evidence was assessed using GradePro. RESULTS: Included in this review were 12 studies with 1236 patients receiving HPS. There were 10 observational studies and 2 randomised controlled trials. Only studies examining QoL in adults receiving HPS were found. There were no studies examining QoL in family carers of these patients. The quality of evidence was graded as low to high and the certainty of evidence for QoL was graded as very low to low. It was not possible to perform a meta-analysis so a narrative review was conducted. All of the studies considered quality of life using validated questionnaires. QoL of patients receiving HPS was lower than the general population regarding physical functioning. Patients had a higher QoL the fewer nights each week they received HPS. CONCLUSIONS: HPS prescriptions seemed to influence QoL. However, the certainty of evidence was very low to low so there is very little to limited confidence about the effect of HPS on patient QoL. Research into family members' QoL is lacking and requires further investigation.
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Familia/psicología , Enfermedades Intestinales/psicología , Enfermedades Intestinales/terapia , Nutrición Parenteral en el Domicilio/métodos , Nutrición Parenteral en el Domicilio/psicología , Calidad de Vida/psicología , HumanosRESUMEN
(1) Background: Malnutrition in cancer patients impacts quality of life (QoL) and performance status (PS). When oral/enteral nutrition is not possible and patients develop intestinal failure, parenteral nutrition (PN) is indicated. Our aim was to assess nutritional status, QoL, and PS in hospitalised cancer patients recently initiated on PN for intestinal failure. (2) Methods: The design was a cross-sectional observational study. The following information was captured: demographic, anthropometric, biochemical and medical information, as well as nutritional screening tool (NST), patient-generated subjective global assessment (PG-SGA), functional assessment of cancer therapy-general (FACT-G), and Karnofsky PS (KPS) data. (3) Results: Among 85 PN referrals, 30 oncology patients (56.2 years, 56.7% male) were identified. Mean weight (60.3 ± 16.6 kg) corresponded to normal body mass index values (21.0 ± 5.1 kg/m2). However, weight loss was significant in patients with gastrointestinal tumours (p < 0.01). A high malnutrition risk was present in 53.3-56.7% of patients, depending on the screening tool. Patients had impaired QoL (FACT-G: 26.6 ± 9.8) but PS indicated above average capability with independent daily activities (KPS: 60 ± 10). (4) Conclusions: Future research should assess the impact of impaired NS and QoL on clinical outcomes such as survival, with a view to encompassing nutritional and QoL assessment in the management pathway of this patient group.
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Pacientes Internos/estadística & datos numéricos , Enfermedades Intestinales/terapia , Desnutrición/terapia , Neoplasias/complicaciones , Nutrición Parenteral/estadística & datos numéricos , Estudios Transversales , Femenino , Humanos , Pacientes Internos/psicología , Enfermedades Intestinales/etiología , Enfermedades Intestinales/psicología , Estado de Ejecución de Karnofsky , Masculino , Desnutrición/etiología , Desnutrición/psicología , Persona de Mediana Edad , Neoplasias/fisiopatología , Neoplasias/psicología , Evaluación Nutricional , Estado Nutricional , Nutrición Parenteral/psicología , Calidad de Vida , Resultado del TratamientoRESUMEN
The prevalence of urinary incontinence and other lower urinary tract symptoms increases with older age. These symptoms are more noticeable in men after the seventh decade of life and in women after menopause. Constipation and fecal incontinence are major causes of symptoms in elderly patients and can significantly impair quality of life. This article summarizes the current literature regarding the occurrence and implications of lower urinary tract and bowel symptoms in the geriatric population.
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Enfermedades Intestinales , Calidad de Vida , Enfermedades Urológicas , Anciano , Estreñimiento/epidemiología , Incontinencia Fecal/epidemiología , Evaluación Geriátrica , Humanos , Enfermedades Intestinales/diagnóstico , Enfermedades Intestinales/fisiopatología , Enfermedades Intestinales/psicología , Prevalencia , Incontinencia Urinaria/epidemiología , Enfermedades Urológicas/diagnóstico , Enfermedades Urológicas/fisiopatología , Enfermedades Urológicas/psicologíaRESUMEN
Total parenteral nutrition may be considered for a carefully selected group of palliative patients with ileus. Predictive factors include a strong desire to live, low burden of disease other than the ileus and expected increase in quality of life as a result of starting with total parenteral nutrition. Therapy compliance is required and a strong social network is desirable. Close collaboration between hospital and general practitioners and frequent reviews of the palliative care plan are also required for success.
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Ileus/terapia , Enfermedades Intestinales/terapia , Cuidados Paliativos/métodos , Nutrición Parenteral Total/métodos , Femenino , Humanos , Ileus/psicología , Enfermedades Intestinales/psicología , Masculino , Cuidados Paliativos/psicología , Nutrición Parenteral Total/psicología , Cooperación del Paciente , Calidad de Vida , Apoyo SocialRESUMEN
BACKGROUND: Infectious intestinal disease affects 25% of the UK population annually; 1 in 50 affected people consult health professionals about their illness. AIMS: We tested if anticipated treatment-seeking decisions for suspected infectious intestinal disease could be related to emotional response, tolerance of symptoms, or beliefs about the consequential benefits and harms of seeking treatment (or not). METHODS: Questionnaire survey of adults living in the UK with statistical analysis of responses. A vignette was presented about a hypothetical gastrointestinal illness. People stated their emotional reactions, expected actions in response and beliefs about possible benefits or harms from seeking treatment (or not getting treatment). Multinomial regression looked for predictors of anticipated behaviour. RESULTS: People were inclined to consult a GP when they believed that seeking treatment would be beneficial and that its absence would be harmful. Seeking treatment was less anticipated if the condition was expected to improve quickly. Respondents were also more likely to consult if they strongly disliked fever or headache, and/or if the illness made them feel anxious or angry. Treatment-seeking (or lack of it) was not linked to harms from treatment-seeking, other specific symptoms and emotional responses. CONCLUSION: It was possible to link anticipated treatment-seeking behaviour to specific factors: expected prognosis, perceived benefits of seeking treatment, some emotions and some specific symptoms.
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Enfermedades Transmisibles/terapia , Enfermedades Intestinales/terapia , Aceptación de la Atención de Salud/estadística & datos numéricos , Adulto , Anciano , Actitud Frente a la Salud , Enfermedades Transmisibles/psicología , Emociones , Humanos , Enfermedades Intestinales/psicología , Masculino , Persona de Mediana Edad , Análisis de Regresión , Encuestas y Cuestionarios , Reino UnidoRESUMEN
INTRODUCTION: Intestinal failure (IF) and intestinal transplant (ITx) are associated with poor quality of life (QoL). Disease-specific assessment of QoL for IF and ITx is challenging, owing to the different problems encountered. We have sought to compare QoL pre-ITx with post-ITx and have compared generic QoL with a stable IF population. METHODS: Two prospectively maintained databases of patients referred for and undergoing ITx and a chronic (Type 2 & 3) IF cohort were interrogated. QoL instruments used were generic (EQ-5D-5L and SF-36) and disease-specific (HPN-QOL and ITx-QOL). Analysis used Student's t-test and one-way ANOVA with Bonferroni correction for multiple comparisons. Data were collected pre- and post-ITx at 3, 6, 12-months and yearly thereafter. RESULTS: All QoL instruments improved following ITx to levels comparable with a cohort of stable IF patients not requiring ITx. Both the visual analogue score component (EQ-5D-5L) and the effect of underlying illness on QoL (HPN-QOL/ITx-QOL) were higher following ITx than either pre-ITx or when compared with the IF cohort. Effects on general health, ability to eat and drink, to holiday and travel were improved as early as 3 months post-ITx. Other components did not before 6-12 months following ITx, but were maintained to at least 24 months. Patient personal financial pressures are greater following ITx, even in a publicly funded healthcare system. CONCLUSION: ITx has beneficial effects on QoL compared to those assessed for or awaiting ITx. QoL following ITx is similar to patients with IF not requiring ITx. A QoL instrument that covers the journey of patients from IF through ITx would assist longitudinal analysis of the value and timing of ITx at an individual level.
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Enfermedades Intestinales/cirugía , Intestinos/trasplante , Trasplante de Órganos , Nutrición Parenteral en el Domicilio , Calidad de Vida , Encuestas y Cuestionarios , Adulto , Anciano , Anciano de 80 o más Años , Costo de Enfermedad , Bases de Datos Factuales , Femenino , Humanos , Enfermedades Intestinales/diagnóstico , Enfermedades Intestinales/fisiopatología , Enfermedades Intestinales/psicología , Masculino , Persona de Mediana Edad , Trasplante de Órganos/efectos adversos , Nutrición Parenteral en el Domicilio/efectos adversos , Valor Predictivo de las Pruebas , Estudios Retrospectivos , Resultado del Tratamiento , Adulto JovenRESUMEN
ABSTRACT Objective: To analyze the playful educational interventions in the knowledge of schoolchildren about intestinal parasitosis. Method: This is a quasi-experimental, non-randomized study, based on pre- and post-intervention, conducted in a public elementary school in a peripheric neighborhood in the city of Ribeirão Preto (SP). The study population consisted of 101 students enrolled in the 5th and 6th grade. For comparison, we used the generalized version of the McNemar chi-squared test. Results: Of the 101 schoolchildren who participated in the study, 48 (47.5%) were female and 53 (52.5%) were male, aged from 9 to 14 years. Students' knowledge on intestinal parasitic infections has increased significantly after the playful educational intervention. Conclusion: Playful educational interventions are an excellent didactical resource in the teaching-learning process of schoolchildren.
RESUMEN Objetivo: Analizar las intervenciones educativas lúdicas en el conocimiento de escolares sobre enteroparasitosis. Método: Se trata de estudio casi-experimental, no aleatorizado, basado en la pre y pos-intervención, que ha sido ocurrido en escuela pública de enseñanza primaria de un barrio de la periferia en la ciudad de Ribeirão Preto (SP). La población del estudio ha sido conformada por 101 alumnos que cursaban el 5º y el 6º año. Para realizar la comparación ha sido utilizada la versión generalizada de la prueba chi-cuadrada de McNemar. Resultados: De los 101 escolares que han participado del estudio, 48 (el 47,5%) eran del sexo femenino y 53 (el 52,5%) del sexo masculino, con edad entre 9 a 14 años. El conocimiento de los alumnos sobre enteroparasitosis después de la intervención educativa lúdica se ha incrementado significativamente. Conclusión: Las intervenciones educativas lúdicas son un excelente recurso didáctico en el contexto del proceso enseñanza-aprendizaje de escolares.
RESUMO Objetivo: Analisar as intervenções educativas lúdicas no conhecimento de escolares sobre enteroparasitoses. Método: Trata-se de estudo quase-experimental, não randomizado, baseado na pré e pós-intervenção, ocorrido em escola pública de ensino fundamental de um bairro da periferia na cidade de Ribeirão Preto (SP). A população do estudo foi composta por 101 alunos que cursavam o 5º e o 6º ano. Para efetuar a comparação foi utilizada a versão generalizada do teste qui-quadrado de McNemar. Resultados: Dos 101 escolares que participaram do estudo, 48 (47,5%) eram do sexo feminino e 53 (52,5%) do sexo masculino, com idade entre 9 a 14 anos. O conhecimento dos alunos sobre enteroparasitoses após a intervenção educativa lúdica aumentou significativamente. Conclusão: As intervenções educativas lúdicas são um excelente recurso didático no contexto do processo ensino-aprendizagem de escolares.
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Humanos , Masculino , Femenino , Niño , Adolescente , Ludoterapia/métodos , Educación en Salud/métodos , Enfermedades Intestinales/psicología , Ludoterapia/instrumentación , Ludoterapia/estadística & datos numéricos , Instituciones Académicas/organización & administración , Instituciones Académicas/estadística & datos numéricos , Educación en Salud/estadística & datos numéricos , Encuestas y Cuestionarios , Giardiasis/psicología , Amebiasis/psicología , Enfermedades Intestinales/terapiaRESUMEN
OBJECTIVE: To analyze the playful educational interventions in the knowledge of schoolchildren about intestinal parasitosis. METHOD: This is a quasi-experimental, non-randomized study, based on pre- and post-intervention, conducted in a public elementary school in a peripheric neighborhood in the city of Ribeirão Preto (SP). The study population consisted of 101 students enrolled in the 5th and 6th grade. For comparison, we used the generalized version of the McNemar chi-squared test. RESULTS: Of the 101 schoolchildren who participated in the study, 48 (47.5%) were female and 53 (52.5%) were male, aged from 9 to 14 years. Students' knowledge on intestinal parasitic infections has increased significantly after the playful educational intervention. CONCLUSION: Playful educational interventions are an excellent didactical resource in the teaching-learning process of schoolchildren.
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Educación en Salud/métodos , Enfermedades Intestinales/psicología , Ludoterapia/métodos , Adolescente , Amebiasis/psicología , Niño , Femenino , Giardiasis/psicología , Educación en Salud/estadística & datos numéricos , Humanos , Enfermedades Intestinales/terapia , Masculino , Ludoterapia/instrumentación , Ludoterapia/estadística & datos numéricos , Instituciones Académicas/organización & administración , Instituciones Académicas/estadística & datos numéricos , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Survival rates of children with intestinal failure have increased; however, associated co-morbidities may affect long-term motor developmental outcomes. This study evaluates motor proficiency and generalized self-efficacy toward physical activity (PA) in children ages 6 to 12 years with intestinal failure. METHODS: This is an observational, cross-sectional study of children followed in a multidisciplinary intestinal rehabilitation program. Motor proficiency was assessed using the Bruininks-Oseretsky Test of Motor Proficiency-2 Short Form (BOT-2 SF) and the Scales of Independent Behavior (parent-proxy report). Children completed the Children's Self-Perceptions of Adequacy in and Predilection for Physical Activity (CSAPPA) and a PA questionnaire. Relevant demographic and medical variables were correlated with assessment results. RESULTS: Participants include 30 children (18 males), median age 7 years (interquartile range [IQR] 6-9) with gestational age 35 weeks (IQR 32-39) and birth weight 2.13 kg (IQR 1.68-2.77). Thirteen (43%) were dependent on parenteral nutrition. Fifteen (50%) scored below average on the BOT-2 SF. Lower BOT-2 SF scores were significantly associated with lower CSAPPA scores (râ=â0.480, Pâ=â0.01), with a common barrier to PA being the presence of a central line or enterostomy tube. Gestational age, height z scores, length of hospital admissions, and number of septic events were all significantly correlated with lower scores in motor proficiency. Number of septic events and total parenteral nutrition days were significant predictors of lower BOT-2 SF scores, when adjusting for birth weight. CONCLUSIONS: Multiple medical variables related to intestinal failure may affect motor proficiency and PA self-efficacy. Developmental follow-up is important to optimize motor skill development and promote PA participation.
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Ejercicio Físico/psicología , Enfermedades Intestinales/psicología , Destreza Motora , Autoeficacia , Niño , Estudios Transversales , Femenino , Humanos , Enfermedades Intestinales/fisiopatología , Enfermedades Intestinales/rehabilitación , Masculino , Rendimiento Físico Funcional , Encuestas y CuestionariosRESUMEN
BACKGROUND & AIMS: Parents of children with intestinal failure, dependent on Home Parenteral Nutrition (HPN), may experience psychosocial problems due to the illness and intensive treatment of their child. Literature concerning psychosocial problems is scarce. Therefore, we aimed to investigate Health-Related Quality of Life (HRQOL), levels of anxiety, depression, distress and everyday problems of these mothers and fathers. METHODS: A multicenter study was conducted among 37 mothers and 25 fathers of 37 children on HPN (response-rate 37/49 = 76%, mean age children = 5.1 years, SD = 4.6). Parents completed three questionnaires to measure different outcomes on the KLIK website (www.hetklikt.nu): the TNO-AZL QOL Questionnaire (TAAQOL) to measure HRQOL, the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression, and the Distress Thermometer for Parents (DT-P) to measure distress. Scores were compared to Dutch reference mothers and fathers using Mann-Whitney U-tests. RESULTS: No differences were found in HRQOL, measured by the TAAQOL, between HPN parents compared to the reference groups, except for the subscale 'depressive emotions' for mothers (p = .01) and 'daily activities' for fathers (p = .04). HPN mothers reported higher levels of depression compared to reference mothers (p = .001). In addition, HPN mothers and fathers reported higher levels of distress than reference mothers (p = .001) and fathers (p = .03). HPN mothers reported significantly more problems in the practical, emotional, cognitive and parenting domains, fathers in the social, emotional and parenting domains. CONCLUSIONS: On HRQOL, anxiety and depression, HPN parents generally did not show much differences compared to reference parents. However, when asked about parental distress and everyday problems, HPN treatment of their child seems highly stressful for some parents and influences daily functioning. Therefore, structural screening for parental psychosocial problems in clinical practice, e.g. using the DT-P, is necessary in order to improve the well-being of both these parents and their children dependent on HPN.
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Ansiedad/psicología , Depresión/psicología , Nutrición Parenteral en el Domicilio , Padres/psicología , Calidad de Vida/psicología , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Enfermedades Intestinales/psicología , Enfermedades Intestinales/terapia , Masculino , Persona de Mediana Edad , Nutrición Parenteral en el Domicilio/psicología , Nutrición Parenteral en el Domicilio/estadística & datos numéricos , Adulto JovenRESUMEN
BACKGROUND: Food aversion (FA) is an eating behavior where children refuse solid or fluid intake. FA can compromise the weaning off parenteral nutrition (PN) in children with intestinal failure (IF), reducing their quality of life (QoL). Around 25% of children with IF experience FA, but few data are available on interventions to get over FA. Messy play therapy (MPT) uses sensory activities to provide another meaningful avenue for learning in children by creating a fun way to experience new textures. This study aims to assess the efficacy of MPT in FA. METHODS: Demographic data and MPT intervention were retrospectively recorded between 2004 and 2017. Food was categorized by tastes and textures. Data are expressed as median and interquartile range (25%-75%). RESULTS: Twelve children were identified. MPT was started at 9 (6-16) months with an enrolling time within the program of 10.11 (7.75-12.5) months. MPT was ended after 19.5 (16.75-28.5) months, and all patients achieved tolerance to oral diet. Significant improvement in savory (P = .001), sweet (P = .002), and mixed texture (P = .001) of food intake was reported. Better QoL and mealtimes with family were reported at median follow-up of 39 (24-56) months. CONCLUSIONS: MPT seems to be a positive intervention to overcome FA. In our experience, the children have gone from not tolerating any intake to tolerating an oral diet, which means enjoying their mealtimes. Further studies are needed to evaluate the effectiveness of MPT in a larger scale of patients.
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Trastornos de Alimentación y de la Ingestión de Alimentos/complicaciones , Trastornos de Alimentación y de la Ingestión de Alimentos/terapia , Enfermedades Intestinales/complicaciones , Enfermedades Intestinales/psicología , Nutrición Parenteral/psicología , Ludoterapia/métodos , Trastornos de Alimentación y de la Ingestión de Alimentos/psicología , Femenino , Humanos , Lactante , Conducta del Lactante/psicología , Enfermedades Intestinales/terapia , Masculino , Calidad de Vida/psicología , Estudios Retrospectivos , Resultado del TratamientoRESUMEN
Treatment results of pediatric intestinal failure have improved markedly during the last decades. With improved survival the attention is turning to other essential outcomes including quality of life and neurodevelopment. So far, relatively few studies with limited number of patients and variable methodology have addressed these issues. Based on these studies using generic health related quality of life tools, children with intestinal failure demonstrate decreased physical health, while PN-dependence is also associated with compromised emotional functioning. Impairments of social functioning are frequently observed among older children and parents. Few recent studies on neurodevelopment imply significant impairments in motor and mental skills among children with intestinal failure despite small sample sizes and limited follow-up times. Development of a disease-specific survey designed for the pediatric intestinal failure population could better reveal the health issues with greatest impact on quality of life. Robust studies with appropriate methodology on neurodevelopment in pediatric intestinal failure with extended follow-up times are urgently needed. Quality of life and neurodevelopment requires greater attention from medical professionals managing children with intestinal failure.
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Enfermedades Intestinales/complicaciones , Trastornos del Neurodesarrollo/etiología , Calidad de Vida , Niño , Indicadores de Salud , Humanos , Enfermedades Intestinales/psicología , Trastornos del Neurodesarrollo/diagnóstico , Calidad de Vida/psicología , Síndrome del Intestino Corto/complicaciones , Síndrome del Intestino Corto/psicologíaRESUMEN
BACKGROUND & AIMS: People with chronic, type 3, intestinal failure often require long-term home parenteral nutrition (HPN). People receiving HPN have frequent interactions with their healthcare, due to the need for close monitoring and due to recurrent hospital admissions. Individuals' responses to, and interactions with, their health care service provides are poorly described. We conducted a service evaluation to explore people's experiences of HPN-related healthcare interactions in order to identify how service providers can best meet the individualised needs of patients. METHODS: We interviewed ten people receiving HPN. The participants were asked about their healthcare interactions related to HPN. The data were analysed using a qualitative research method known as interpretive phenomenological analysis. This analytical approach is concerned with the meaning that people ascribe to particular events, in this case their HPN-related healthcare interactions. RESULTS: The participants in this study described a range of psychosocial problems related to their HPN healthcare interactions, including reliance, risk and restrictions. Participants' solutions to these problems included adaptation of their routine, self-guardianship and passivity. Sometimes, these solutions generated secondary problems of their own, including concerns with resource use, negative healthcare interactions and conflicts of responsibility. A range of contextual factors influenced how participants interpreted their healthcare interactions and the solutions available to them. These contextual factors included continuity of healthcare professionals, the attitude of staff, and information and knowledge about HPN. CONCLUSIONS: By attending to the individual meaning ascribed to healthcare events, and the contextual factors that surround these events, we have been able to better understand the decisions made by patients dependent on HPN. This suggests that healthcare professionals may also better understand their patients' decision making by attending to the individual meaning that patients ascribe to healthcare events and to contextual factors. We propose a model to describe the process of problem -> resolution -> problem in which participants are actively engaged.
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Enfermedades Intestinales/terapia , Síndromes de Malabsorción/terapia , Nutrición Parenteral en el Domicilio , Participación del Paciente , Solución de Problemas , Adaptación Psicológica , Anciano , Conducta de Elección , Enfermedad Crónica , Costo de Enfermedad , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Entrevistas como Asunto , Absorción Intestinal , Enfermedades Intestinales/diagnóstico , Enfermedades Intestinales/fisiopatología , Enfermedades Intestinales/psicología , Síndromes de Malabsorción/diagnóstico , Síndromes de Malabsorción/fisiopatología , Síndromes de Malabsorción/psicología , Masculino , Persona de Mediana Edad , Estado Nutricional , Nutrición Parenteral en el Domicilio/efectos adversos , Nutrición Parenteral en el Domicilio/psicología , Investigación Cualitativa , Resultado del TratamientoRESUMEN
BACKGROUND & AIMS: Several studies have been published reporting on the impact of Home Parenteral Nutrition (HPN) on the lives of people with Type 3 Intestinal Failure. These studies focused on symptoms and functional limitations resulting from the treatment. The aim of this study was to determine how dependence on HPN affects individuals' ability to fulfil their human needs. METHODS: Unstructured qualitative interviews were conducted with people dependent on HPN, who were asked to explain how their lives were affected by the treatment. Theoretical thematic analysis was conducted on the interview transcripts to identify statements describing aspects of human needs that were left unfulfilled. Care was taken to separate the impact of HPN from that of the underlying disease. RESULTS: Interviews were conducted with 30 patients (53% female; mean age, 55.9 (range 35-76) years). Most of the sample (87%) had short bowel syndrome. Major aspects of need affected by HPN were related to: autonomy, cognition, relationships, role fulfilment, socialisation, appearance and self-esteem, appetite and perceived vulnerability. CONCLUSIONS: The study illustrates how patients' lives are affected by HPN. Statements generated from this qualitative study were used to produce the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric measure of quality of life specific to people using HPN.
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Enfermedades Intestinales/terapia , Nutrición Parenteral en el Domicilio , Cooperación del Paciente/estadística & datos numéricos , Satisfacción del Paciente/estadística & datos numéricos , Autocuidado , Adulto , Anciano , Femenino , Humanos , Enfermedades Intestinales/fisiopatología , Enfermedades Intestinales/psicología , Masculino , Persona de Mediana Edad , Necesidades Nutricionales , Investigación Cualitativa , Autocuidado/estadística & datos numéricos , Encuestas y Cuestionarios , Resultado del TratamientoRESUMEN
BACKGROUND: Clinical and psychosocial outcomes of a multimodal surgical approach for chronic intestinal pseudo-obstruction were analyzed in 24 patients who were followed over a 2- to 12-year period in a single center after surgery or intestinal/multivisceral transplant (CTx). METHODS: The main reasons for surgery were sub-occlusion in surgery and parenteral nutrition-related irreversible complications with chronic intestinal failure in CTx. RESULTS: At the end of follow-up (February 2015), 45.5% of CTx patients were alive: after transplantation, improvement in intestinal function was observed including a tendency toward recovery of oral diet (81.8%) with reduced parenteral nutrition support (36.4%) in the face of significant mortality rates and financial costs (mean, 202.000 euros), frequent hospitalization (mean, 8.8/re-admissions/patient), as well as limited effects on pain or physical wellness. CONCLUSIONS: Through psychological tests, transplant recipients perceived a significant improvement of mental health and emotional state, showing that emotional factors were more affected than were functional/cognitive impairment and social interaction.
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Enfermedades Intestinales/cirugía , Seudoobstrucción Intestinal/cirugía , Intestinos/trasplante , Calidad de Vida/psicología , Vísceras/trasplante , Adolescente , Adulto , Enfermedad Crónica , Terapia Combinada , Femenino , Estudios de Seguimiento , Humanos , Enfermedades Intestinales/etiología , Enfermedades Intestinales/psicología , Seudoobstrucción Intestinal/psicología , Masculino , Persona de Mediana Edad , Nutrición Parenteral Total/efectos adversos , Periodo Posoperatorio , Estudios Retrospectivos , Resultado del Tratamiento , Adulto JovenRESUMEN
STUDY QUESTION: Is it possible to develop a validated score that can identify women with Bowel Endometriosis Syndrome (BENS) and be used to monitor the effect of medical and surgical treatment? SUMMARY ANSWER: The BENS score can be used to identify women with BENS and to monitor the effect of medical and surgical treatment of women suffering from bowel endometriosis. WHAT IS KNOWN ALREADY: Endometriosis is a heterogeneous disease with extensive variation in anatomical and clinical presentation, and symptoms do not always correspond to the disease burden. Current endometriosis scoring systems are mainly based on anatomical and surgical findings. STUDY DESIGN, SIZE, DURATION: The score was developed and validated from a cohort of 525 women with medically or surgically treated bowel endometriosis from Aarhus and Copenhagen University Hospitals, Denmark. PARTICIPANTS/MATERIALS, SETTING AND METHODS: Patients filled in questionnaires on pelvic pain, quality of life (QoL) and urinary, sexual and bowel function. Items were selected for the final score using clinical and statistical criteria. The chosen variables were included in a multivariate analysis. Individual score values were designated items to form the BENS score, which was divided into 'no BENS', 'minor BENS' and 'major BENS.' Internal and external validations were performed. MAIN RESULTS AND THE ROLE OF CHANCE: The six most important items were 'pelvic pain', 'use of analgesics', 'dyschezia', 'straining to urinate', 'fecal urgency' and 'satisfaction with sexual life'. The range of the BENS score (0-28) was divided into 0-8 (no BENS), 9-16 (minor BENS) and 17-28 (major BENS). External validation showed a significant association between BENS score and QoL (P = 0.0001). LIMITATIONS, REASONS FOR CAUTION: The BENS scoring system is limited by the fact that it was developed from a single endometriosis unit in Denmark, making it susceptible to social, cultural and demographic bias. WIDER IMPLICATIONS OF THE FINDINGS: It is the first endometriosis classification system to be based directly on the symptomatology of the patient. Validation in other languages will promote comparison of treatments and results across borders. STUDY FUNDING/COMPETING INTEREST(S): No external funding was either sought or obtained for this study. A.F. is an investigator for Bayer, outside this work.
Asunto(s)
Dispareunia/diagnóstico , Endometriosis/diagnóstico , Enfermedades Intestinales/diagnóstico , Dolor Pélvico/diagnóstico , Calidad de Vida/psicología , Disfunciones Sexuales Fisiológicas/diagnóstico , Adulto , Dispareunia/etiología , Dispareunia/psicología , Endometriosis/complicaciones , Endometriosis/psicología , Femenino , Humanos , Enfermedades Intestinales/complicaciones , Enfermedades Intestinales/psicología , Persona de Mediana Edad , Dolor Pélvico/etiología , Dolor Pélvico/psicología , Índice de Severidad de la Enfermedad , Disfunciones Sexuales Fisiológicas/etiología , Disfunciones Sexuales Fisiológicas/psicología , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: Maternal separation (MS) leads to intestinal barrier dysfunction in neonatal mice. Endoplasmic reticulum (ER) stress is associated with apoptosis and pro-inflammatory response induction. We hypothesized that MS induced gut damage is associated with ER stress and that administration of an ER stress inhibitor protects gut damage. METHODS: C57BL/6 mice received intraperitoneal PBS (n=10) or Salubrinal (1mg/kg/day, n=10). MS was performed soon after treatment for 3h daily between P5 and P9. Ten untreated neonatal mice served as control. The colon was harvested on P9 and analyzed for ER stress markers (BiP, CHOP), apoptosis (CC3), goblet cell number per crypt and crypt length (Alcian blue, hematoxylin/eosin), and transcellular permeability (Ussing chamber). Groups were compared using one-way ANOVA with Bonferroni post-test. RESULTS: Compared to controls, MS mice had higher relative protein expression of ER stress and apoptosis markers (p<0.05) and reduced goblet cell number per crypt and crypt length (p<0.001). In comparison to PBS mice, Salubrinal treated mice had higher goblet cell number (p<0.05), crypt length (p<0.001), and lower transcellular permeability (p<0.05). CONCLUSIONS: Maternal separation induces ER stress and causes colon damage, but ER stress inhibitor protects morphology and permeability. This provides insights on bowel pathogenesis and potential novel treatments for diseases such as necrotizing enterocolitis.
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Colon/fisiología , Estrés del Retículo Endoplásmico/fisiología , Enfermedades Intestinales/fisiopatología , Enfermedades Intestinales/psicología , Mucosa Intestinal/fisiología , Privación Materna , Animales , Apoptosis , Permeabilidad de la Membrana Celular/efectos de los fármacos , Permeabilidad de la Membrana Celular/fisiología , Cinamatos/farmacología , Colon/efectos de los fármacos , Estrés del Retículo Endoplásmico/efectos de los fármacos , Fármacos Gastrointestinales/farmacología , Mucosa Intestinal/efectos de los fármacos , Ratones , Ratones Endogámicos C57BL , Tiourea/análogos & derivados , Tiourea/farmacologíaRESUMEN
BACKGROUND: Up to 90 % of patients undergoing low anterior resection complain of increased daily bowel movements, urgency, and a variable degree of incontinence. A symptom-based scoring system for bowel dysfunction after low anterior resection for rectal cancer has recently been developed and validated. The aim of our study was to adapt the low anterior resection syndrome (LARS) scale questionnaire to the Lithuanian language, and assess its psychometric properties. METHODS: The LARS questionnaire was translated into Lithuanian by the Scientific Advisory Committee of the Medical Outcomes Trust using a standard procedure of double-back translation. The Lithuanian version of the LARS (LARS-LT) questionnaire was completed by 111 patients who underwent low anterior resection with total mesorectal excision in the period from January 1, 2008, to December 31, 2012, at the National Cancer Institute. An anchor question from the Wexner score assessing the impact of bowel function on lifestyle was included. A subgroup of 20 patients completed the LARS-LT questionnaire twice. Validity was tested using a factor analysis, and internal reliability was estimated using the Cronbach's alpha and intraclass correlation coefficients. RESULTS: Twenty-seven patients (25 %) had no LARS, 26 (24 %) had minor LARS, and 55 (56 %) had major LARS. The response rate was 60.7 %. The LARS-LT showed significantly high reliability and internal consistency [Cronbach's α = 0.88, interclass correlation coefficient-0.86 (0.71-0.98)]. The LARS score showed significant correlations with the lifestyle question (p < 0.05). It could not detect differences between female and male patient groups (p = 0.33), patients' age (p = 0.45), patients who had/had not undergone radiation therapy (p = 0.07), and those in whom the distal edge of the tumor was close to or far from the anal verge (p = 0.17). CONCLUSIONS: The Lithuanian version of the LARS-LT shows acceptable psychometric properties and can be considered a valuable and specific instrument to assess bowel function in rectal cancer patients, both for research purposes and in clinical practice.
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Procedimientos Quirúrgicos del Sistema Digestivo/efectos adversos , Enfermedades Intestinales/diagnóstico , Complicaciones Posoperatorias/diagnóstico , Neoplasias del Recto/cirugía , Encuestas y Cuestionarios/normas , Anciano , Incontinencia Fecal/diagnóstico , Incontinencia Fecal/etiología , Incontinencia Fecal/psicología , Femenino , Humanos , Enfermedades Intestinales/etiología , Enfermedades Intestinales/psicología , Intestinos/fisiopatología , Lituania , Masculino , Complicaciones Posoperatorias/etiología , Complicaciones Posoperatorias/psicología , Psicometría , Neoplasias del Recto/psicología , Recto/fisiopatología , Recto/cirugía , Reproducibilidad de los Resultados , SíndromeRESUMEN
The current study aims to explor how men would advise other men about seeking help for lower bowel symptoms and also to determine the factors that may influence help seeking. A purposive sample of Western Australian men aged 18 years and older was recruited for the study. Participants completed 8 of the 28 randomly assigned video vignettes (video clips) displaying men (older or younger) with various combinations of one or more lower bowel symptoms. Participants were asked if the person in the vignette should seek health advice. Subsequently, the participants answered a set of questions based on the Health Belief Model. A total of 408 participants (response rate = 51%) answered 3,264 vignettes. Participants younger than 50 years, participants who were not tertiary educated and those who had lower incomes, or those living in regional or remote areas were less likely to advise help seeking from general practitioner (GP). Participants who visited their general practitioner less frequently were also less likely to advisehelp seeking. There was a trend to consider unintentional weight loss and diarrhea as minor symptoms not necessitating medical attention compared with rectal bleeding. The findings suggest for a need to improve public awareness among men about the need to seek timely medical advice for lower bowel symptoms in primary care. The importance of early presentation of persistent lower bowel symptoms must be specifically targeted at men younger than 50 years, those with lower incomes, or residing in regional or remote areas.