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Background: Many liver patients have unmet palliative care needs, but liver clinicians are unclear whom to refer to specialist palliative care (SPC). The Supportive and Palliative Care Indicator Tool (SPICT) and the Bristol Prognostic Screening Tool (BPST) could help identify suitable patients, but neither has been tested for this role. This study evaluated their role as screening tools for palliative care needs and for predicting 12-month mortality. Methods: A case note review of hepatology in-patients, who were not peritransplant and post-transplant status, was conducted in one tertiary unit. Main outcomes were clinical judgement of need for SPC referral, BPST scores, SPICT attribution of caseness and 12-month survival status. Discriminatory ability of tools was assessed using sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV) and area under the receiver operating characteristic (AUROC) curve. Results: 117 medical notes were reviewed for survival analysis, 47 of which were additionally assessed for suitability for SPC referral, using clinical judgement. SPICT (sensitivity=93%; PPV=93%; AUROC=0.933) and BPST (sensitivity=59%, PPV=79%, AUROC=0.693) demonstrated excellent and good performance, respectively, in predicting patients' need for SPC referral. SPICT and BPST only had moderate ability at predicting death at 12 months (PPV: 54% and 56%, respectively). Conclusion: SPICT and BPST show potential as screening tools for identifying patients for referral to SPC. Further work is needed to determine how to implement these tools in a clinical setting.
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BACKGROUND: High-risk neuroblastoma (HR NBL) treatment requires intensive induction chemotherapy. The profoundly emetogenic agents used can compromise nutritional status. Our institution introduced a new antiemetic guideline in 2010 incorporating regular dexamethasone, in addition to ondansetron, for all highly emetogenic protocols. PROCEDURE: A retrospective comparative review of pediatric patients diagnosed with HR NBL who received rapid COJEC induction chemotherapy as per HR-SIOPEN NBL trial. Prophylactic antiemetics were prescribed regardless of chemotherapy emetogenicity in group A (2004-2010) but for defined time periods considering chemotherapy emetogenicity in group B (2010-2017). RESULTS: Sixty-three children were eligible for inclusion (median age, 31 months; range, 1-88 months). Group A had more episodes of emesis than group B (189 vs. 116, P < 0.0001). There was a significant difference in weight-for-age Z score change between the groups by induction end (P = 0.0027). Four children (13%) in group A lost >10% body weight versus none in group B. Nutrition support (NS) was utilized by 29 children (94%) in group A and 22 children (69%) in group B. Group A had a median of 3 (range, 1-7) admissions for febrile neutropenia (FN) versus a median of 1.5 (range, 0-4) for group B (P = 0.003) during induction. CONCLUSION: The review of our guidelines led to reduced emesis frequency for group B. They also required less NS, followed expected growth trajectories more closely and had fewer FN admissions. We propose that this may have occurred due to better emesis control resulting in improved nutritional status and associated enhanced immune function.
Asunto(s)
Antieméticos/uso terapéutico , Quimioterapia de Inducción/efectos adversos , Neuroblastoma/tratamiento farmacológico , Estado Nutricional/efectos de los fármacos , Vómitos/prevención & control , Protocolos de Quimioterapia Combinada Antineoplásica/efectos adversos , Niño , Preescolar , Dexametasona/uso terapéutico , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Náusea/inducido químicamente , Náusea/prevención & control , Ondansetrón/uso terapéutico , Guías de Práctica Clínica como Asunto , Estudios Retrospectivos , Vómitos/inducido químicamenteRESUMEN
BACKGROUND: For over 50 years, surgical septal myectomy has been the preferred treatment for drug-refractory heart failure symptoms in patients with obstructive hypertrophic cardiomyopathy (HCM). Over this time in the United States, the majority of myectomy operations have been performed in a small number of select referral centers. METHODS: We have taken the opportunity to report results from the relatively new Tufts HCM Center and surgical program, incorporated 13 years ago, during which 507 myectomies (52±14 years of age; 56% male) were performed by one cardiothoracic surgeon, Dr. Hassan Rastegar. RESULTS: Resting left ventricular (LV) outflow gradients were reduced from 56±42 mmHg preoperatively to 1.2±6.8 mmHg on most recent echocardiogram 2.0±2.5 years after surgery, and 94% of patients showed clinical improvement to NYHA functional class I or II. The first 200 myectomies were performed without mortality or major complications. Among all patients, 30-day mortality rate was 0.8%. Over follow-up of 3.2±2.8 years, 11 patients died (four due to HCM causes) with long-term survival after myectomy of 94% at 5 years (95% CI: 89-96%) and 91% at 10 years (95% CI: 84-95%), which did not differ from the age- and gender-matched general U.S. population (log-rank P=0.9). CONCLUSIONS: This experience demonstrates that, with the appropriate support, new HCM surgical programs can provide patients successful relief of outflow obstruction, extended longevity and restored of quality of life.
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BACKGROUND: Research studies have begun to investigate the post-16 outcomes for young adults with a specific language impairment (SLI). As yet only tentative conclusions can be drawn with respect to academic and employment outcomes and the factors that are associated with more positive outcomes. Evidence for these findings has relied predominantly on associations between various language, academic and psychosocial assessments. Little attention has been paid to the perspective of the young person. AIMS: To investigate from the perspective of a group of young people with a history of SLI the factors they believed have enabled and presented a challenge to their post-16 education and employment outcomes and experiences. METHODS & PROCEDURES: Nineteen (four female, 15 male) young people aged from 19 to 23 years (average age 21 years), who had all attended the same residential special school for pupils with SLI, were interviewed face to face to explore their views as to what had enabled and limited their transition experiences to date. The data were analysed using thematic analysis. OUTCOMES & RESULTS: The majority of the young people saw themselves as key agents of change and very active participants in steering their own transition since leaving school. They acknowledged the important role played by their parents and families and how factors such as SLI had affected their transition experiences. CONCLUSIONS & IMPLICATIONS: The study supports evidence from research with different groups of young people with special educational needs (SEN) and disabilities of the importance of school and post-16 curriculums which develop agency on behalf of the young person.