Observational studies demonstrate links between patient-centered communication, quality of life (QOL), and aggressive treatments in advanced cancer, yet few randomized clinical trials (RCTs) of communication interventions have been reported.
Objective
To determine whether a combined intervention involving oncologists, patients with advanced cancer, and caregivers would promote patient-centered communication, and to estimate intervention effects on shared understanding, patient-physician relationships, QOL, and aggressive treatments in the last 30 days of life.
Design, Setting, and Participants
Cluster RCT at community- and hospital-based cancer clinics in Western New York and Northern California; 38 medical oncologists (mean age 44.6 years; 11 (29%) female) and 265 community-dwelling adult patients with advanced nonhematologic cancer participated (mean age, 64.4 years, 146 [55.0%] female, 235 [89%] white; enrolled August 2012 to June 2014; followed for 3 years); 194 patients had participating caregivers.
Interventions
Oncologists received individualized communication training using standardized patient instructors while patients received question prompt lists and individualized communication coaching to identify issues to address during an upcoming oncologist visit. Both interventions focused onengagingpatients in consultations,respondingto emotions,informingpatients about prognosis and treatment choices, andbalanced framingof information. Control participants received no training.
Main Outcomes and Measures
The prespecified primary outcome was a composite measure of patient-centered communication coded from audio recordings of the first oncologist visit following patient coaching (intervention group) or enrollment (control). Secondary outcomes included the patient-physician relationship, shared understanding of prognosis, QOL, and aggressive treatments and hospice use in the last 30 days of life.
Results
Data from 38 oncologists (19 randomized to intervention) and 265 patients (130 intervention) were analyzed. In fully adjusted models, the intervention resulted in clinically and statistically significant improvements in the primary physician-patient communication end point (adjusted intervention effect, 0.34; 95% CI, 0.06-0.62;P = .02). Differences in secondary outcomes were not statistically significant.
Conclusions and Relevance
A combined intervention that included oncologist communication training and coaching for patients with advanced cancer was effective in improving patient-centered communication but did not affect secondary outcomes.
1. Introduction - P. B. Sullivan and L. Rosenbloom. 2. Normal feeding behaviour - R. D. Stevenson. 3. The causes of feeding difficulties in disabled children - P. B. Sullivan and L. Rosenbloom. 4. The nutritional and neurodevelopmental consequences of feeding difficulties in disabled children - L. Rosenbloom and P. B. Sullivan. 5. The respiratory consequences of neurological deficit - Ben N. J. Shaw. 6. The therapeutic approach to the child with feeding difficulty:. I. Assessment - L. S. Wolf. 7. Nutritional assessment of the disabled child - V. Stallings and Babette S. Zemel. 8. Diagnostic imaging in the assessment of alimentary function of the disabled child - E. Loveday. 9. Drooling - P. Blasco. 10. Constipation in disabled children - G. Clayden. 11. The therapeutic approach to the child with feeding difficulty:. II. Management and treatment - L. Carroll and S. Reilly. 12. The therapeutic approach to the child with feeding difficulty:. III. Enteral feeding - D. A. Lloyd and A. Pierro. 13. The ethics and implications of treatment programmes for disabled children with feeding difficulties - L. Rosenbloom and P. B. Sullivan. Index.
To test whether gut permeability is increased in autism spectrum disorders (ASD) by evaluating gut permeability in a population-derived cohort of children with ASD compared with age- and intelligence quotient-matched controls without ASD but with special educational needs (SEN).One hundred thirty-three children aged 10-14 years, 103 with ASD and 30 with SEN, were given an oral test dose of mannitol and lactulose and urine collected for 6 hr. Gut permeability was assessed by measuring the urine lactulose/mannitol (L/M) recovery ratio by electrospray mass spectrometry-mass spectrometry. The ASD group was subcategorized for comparison into those without (n = 83) and with (n = 20) regression.There was no significant difference in L/M recovery ratio (mean (95% confidence interval)) between the groups with ASD: 0.015 (0.013-0.018), and SEN: 0.014 (0.009-0.019), nor in lactulose, mannitol, or creatinine recovery. No significant differences were observed in any parameter for the regressed versus non-regressed ASD groups. Results were consistent with previously published normal ranges. Eleven children (9/103 = 8.7% ASD and 2/30 = 6.7% SEN) had L/M recovery ratio > 0.03 (the accepted normal range cut-off), of whom two (one ASD and one SEN) had more definitely pathological L/M recovery ratios > 0.04.There is no statistically significant group difference in small intestine permeability in a population cohort-derived group of children with ASD compared with a control group with SEN. Of the two children (one ASD and one SEN) with an L/M recovery ratio of > 0.04, one had undiagnosed asymptomatic celiac disease (ASD) and the other (SEN) past extensive surgery for gastroschisis.
Research Investigation of enteric neurobiology and development of the enteric nervous system. Neuro‐immunology and the gut: characterization of the interactions between the central nervous system, enteric nervous system and immune system. Evaluation of the role of early life events in the development of functional gastrointestinal disorders. Intervention evelopment of multicenter, controlled studies aimed at evaluating epidemiology, pathophysiology and treatment of functional bowel disorders. Creation of a tissue bank for children with enteric neuromuscular disorders. Validation of the Rome II diagnostic criteria at the general practitioner and specialty level. Education Train physicians and researchers in performing motility, sensory, and laboratory assessment in the field of enteric neuromuscular disorders. Educate primary care physicians in the evaluation and treatment of GER and other functional bowel disorders. Educate care providers on the high incidence of enteric neuromuscular disorders and the special needs of children with neurologic handicaps.
Abstract Very-early-onset inflammatory bowel disease (VEO-IBD) is a heterogeneous phenotype associated with a spectrum of rare Mendelian disorders. Here, we perform whole-exome-sequencing and genome-wide genotyping in 145 patients (median age-at-diagnosis of 3.5 years), in whom no Mendelian disorders were clinically suspected. In five patients we detect a primary immunodeficiency or enteropathy, with clinical consequences ( XIAP, CYBA, SH2D1A, PCSK1 ). We also present a case study of a VEO-IBD patient with a mosaic de novo, pathogenic allele in CYBB . The mutation is present in ~70% of phagocytes and sufficient to result in defective bacterial handling but not life-threatening infections. Finally, we show that VEO-IBD patients have, on average, higher IBD polygenic risk scores than population controls (99 patients and 18,780 controls; P < 4 × 10 −10 ), and replicate this finding in an independent cohort of VEO-IBD cases and controls (117 patients and 2,603 controls; P < 5 × 10 −10 ). This discovery indicates that a polygenic component operates in VEO-IBD pathogenesis.
Aim Gastrostomy feeding children with spastic quadriplegic cerebral palsy (SQCP) improves weight gain but may cause excess deposition of body fat. This study was designed to investigate whether weight gain could be achieved without an adverse effect on body composition by using a low‐energy feed in gastrostomy‐fed children with SQCP. Method Fourteen children (seven male; seven female; median age 2y; range 10mo–11y) with SQCP were studied, 13 of whom were classified as Gross Motor Function Classification Score (GMFCS) level V and one as GMFCS level IV. Children were eligible for the study if they weighed between 8 and 30kg with a diagnosis of severe SQCP and significant feeding difficulties in whom a clinical decision had been made to insert a gastrostomy feeding tube. The feed used in the study had an energy concentration of 0.75kcal/mL (Nutrini Low Energy Multi Fibre). Assessments were performed before gastrostomy insertion (baseline) and after 6 months, and included body composition, growth, nutritional intake, and gastrointestinal symptoms. Results There was a significant increase in weight (median difference 1.9kg; 95% confidence interval [CI] 0.85–3.03kg; p =0.012), mid‐upper arm circumference (median difference 1.45cm; 95% CI −0.36cm to 3.47cm; p =0.043), and lower leg length (median difference 1.62cm; 95% CI 0.44–3.95cm; p =0.012) over the 6 months. There was no significant increase in fat mass index (median diff 1.21, 95% CI −1.15 to 2.94, p =0.345) or fat free mass index (median diff −1.43, 95% CI −1.15 to 2.94, p =0.249). Micronutrient levels remained within reference ranges with the exception of elevated chromium. The median percentage intake of the estimated average requirements for energy (kcal) was 43% at the beginning of the study and 48.8% after 6 months on the low‐energy feed. Interpretation Children with SQCP who are fed a low‐energy, micronutrient‐complete, high‐fibre feed continue to grow even with energy intakes below 75% of the estimated average requirements. This was not associated with a disproportionate rise in fat mass or fat percentage, and the majority of micronutrient levels remained within the reference range.
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