Germline CDH1 mutations confer a high lifetime risk of developing diffuse gastric (DGC) and lobular breast cancer (LBC). A multidisciplinary workshop was organised to discuss genetic testing, surgery, surveillance strategies, pathology reporting and the patient's perspective on multiple aspects, including diet post gastrectomy. The updated guidelines include revised CDH1 testing criteria (taking into account first-degree and second-degree relatives): (1) families with two or more patients with gastric cancer at any age, one confirmed DGC; (2) individuals with DGC before the age of 40 and (3) families with diagnoses of both DGC and LBC (one diagnosis before the age of 50). Additionally, CDH1 testing could be considered in patients with bilateral or familial LBC before the age of 50, patients with DGC and cleft lip/palate, and those with precursor lesions for signet ring cell carcinoma. Given the high mortality associated with invasive disease, prophylactic total gastrectomy at a centre of expertise is advised for individuals with pathogenic CDH1 mutations. Breast cancer surveillance with annual breast MRI starting at age 30 for women with a CDH1 mutation is recommended. Standardised endoscopic surveillance in experienced centres is recommended for those opting not to have gastrectomy at the current time, those with CDH1 variants of uncertain significance and those that fulfil hereditary DGC criteria without germline CDH1 mutations. Expert histopathological confirmation of (early) signet ring cell carcinoma is recommended. The impact of gastrectomy and mastectomy should not be underestimated; these can have severe consequences on a psychological, physiological and metabolic level. Nutritional problems should be carefully monitored.
Integrated care programmes seemed to have positive effects on the quality of care. However, integrated care programmes have widely varying definitions and components and failure to recognize these variations leads to inappropriate conclusions about the effectiveness of these programmes and to inappropriate application of research results. To compare programmes and better understand the (cost) effectiveness of the programmes, consistent definitions must be used and component interventions must be well described.
Purpose Assessment of current practice with a valid set of indicators is the key to successfully improving the quality of patient-centred care. For improvement purposes, we developed indicators of patient-centred cancer care and tested them on a population of patients with non-small cell lung cancer (NSCLC). Methods Recommendations for patient-centred care were extracted from clinical guidelines, and patients were interviewed to develop indicators for assessing the patientcentredness of cancer care. These indicators were tested with regard to psychometric characteristics (room for improvement, applicability, discriminating capacity and reliability) on 132 patients with NSCLC treated in six hospitals in the east Netherlands. Data were collected from patients by means of questionnaires. Results Eight domains of patient-centred cancer care were extracted from 61 oncology guidelines and 37 patient interviews and were translated into 56 indicators. The practice test amongst patients with NSCLC showed the most room for improvement within the domains 'emotional and psychosocial support', 'physical support' and 'information supply'. Overall, 26 of the 56 indicators had good psychometric characteristics. Conclusions Developing a valid set of patient-centred indicators is a first step towards improving the patient centredness of cancer care. Indicators can be based on recommendations from guidelines, but adding patient opinions leads to a more complete picture of patient centredness. The practice test on patients with NSCLC showed that the patient centredness of cancer care can be improved. Our set of indicators may also be useful for future quality assessments for other patients with cancers or chronic diseases.
In many countries, different aspects of primary care provision have shifted from doctors to nurses. Our study suggests that these skill mix changes meet the needs of patients and that patients are very satisfied with the care they receive. However, to implement skill mix change in general practice it is important to consider usual work demarcations between nurses and doctors.
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