BackgroundIt is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context.MethodsWe selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year.ResultsProfessionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child’s non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools.ConclusionThe formulation of explicit criteria to assess the quality of life in this context, along with detailed recommendations provided by professionals, support the development of systematic measurement strategy. Such a strategy would contribute to the development of common care goals and further facilitate communication between professionals and with the family.Electronic supplementary materialThe online version of this article (10.1186/s12904-018-0328-y) contains supplementary material, which is available to authorized users.
The study revealed a close relationship between pain intensity and fear of recurrence. In particular, it showed that effective pain management was accompanied by a reduced fear of recurrence. Information, although essential, appeared insufficient to overcome patients' concerns about pain. Therefore, the implement of a systematic screening for arthralgia and the improvement of analgesic treatment are essential issues. New strategies for pharmacological and nonpharmacological treatment must be developed.
Background The Esophagectomy Complications Consensus Group (ECCG) and the Dutch Upper Gastrointestinal Cancer Audit (DUCA) have set standards in reporting outcomes after oesophagectomy. Reporting outcomes from selected high-volume centres or centralized national cancer programmes may not, however, be reflective of the true global prevalence of complications. This study aimed to compare complication rates after oesophagectomy from these existing sources with those of an unselected international cohort from the Oesophago-Gastric Anastomosis Audit (OGAA). Methods The OGAA was a prospective multicentre cohort study coordinated by the West Midlands Research Collaborative, and included patients undergoing oesophagectomy for oesophageal cancer between April and December 2018, with 90 days of follow-up. Results The OGAA study included 2247 oesophagectomies across 137 hospitals in 41 countries. Comparisons with the ECCG and DUCA found differences in baseline demographics between the three cohorts, including age, ASA grade, and rates of chronic pulmonary disease. The OGAA had the lowest rates of neoadjuvant treatment (OGAA 75.1 per cent, ECCG 78.9 per cent, DUCA 93.5 per cent; P < 0.001). DUCA exhibited the highest rates of minimally invasive surgery (OGAA 57.2 per cent, ECCG 47.9 per cent, DUCA 85.8 per cent; P < 0.001). Overall complication rates were similar in the three cohorts (OGAA 63.6 per cent, ECCG 59.0 per cent, DUCA 62.2 per cent), with no statistically significant difference in Clavien–Dindo grades (P = 0.752). However, a significant difference in 30-day mortality was observed, with DUCA reporting the lowest rate (OGAA 3.2 per cent, ECCG 2.4 per cent, DUCA 1.7 per cent; P = 0.013). Conclusion Despite differences in rates of co-morbidities, oncological treatment strategies, and access to minimal-access surgery, overall complication rates were similar in the three cohorts.
Background Textbook outcome has been proposed as a tool for the assessment of oncological surgical care. However, an international assessment in patients undergoing oesophagectomy for oesophageal cancer has not been reported. This study aimed to assess textbook outcome in an international setting. Methods Patients undergoing curative resection for oesophageal cancer were identified from the international Oesophagogastric Anastomosis Audit (OGAA) from April 2018 to December 2018. Textbook outcome was defined as the percentage of patients who underwent a complete tumour resection with at least 15 lymph nodes in the resected specimen and an uneventful postoperative course, without hospital readmission. A multivariable binary logistic regression model was used to identify factors independently associated with textbook outcome, and results are presented as odds ratio (OR) and 95 per cent confidence intervals (95 per cent c.i.). Results Of 2159 patients with oesophageal cancer, 39.7 per cent achieved a textbook outcome. The outcome parameter ‘no major postoperative complication’ had the greatest negative impact on a textbook outcome for patients with oesophageal cancer, compared to other textbook outcome parameters. Multivariable analysis identified male gender and increasing Charlson comorbidity index with a significantly lower likelihood of textbook outcome. Presence of 24-hour on-call rota for oesophageal surgeons (OR 2.05, 95 per cent c.i. 1.30 to 3.22; P = 0.002) and radiology (OR 1.54, 95 per cent c.i. 1.05 to 2.24; P = 0.027), total minimally invasive oesophagectomies (OR 1.63, 95 per cent c.i. 1.27 to 2.08; P < 0.001), and chest anastomosis above azygous (OR 2.17, 95 per cent c.i. 1.58 to 2.98; P < 0.001) were independently associated with a significantly increased likelihood of textbook outcome. Conclusion Textbook outcome is achieved in less than 40 per cent of patients having oesophagectomy for cancer. Improvements in centralization, hospital resources, access to minimal access surgery, and adoption of newer techniques for improving lymph node yield could improve textbook outcome.
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