Background:People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs.Aim:To define consensus norms for palliative care of people with intellectual disabilities in Europe.Design:Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version.Setting and participants:Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.Results:A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.Conclusion:This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
A series of eight plasma cell granulomas of the lung were examined. Their clinical, pathologic, and immunohistochemical characteristics as well as the ultrastructural features of one case are in agreement with those found in the literature. One patient died after a surgical intervention complicated by invasion of pulmonary veins. This led to a search for vascular injuries in the other cases. On the whole, of eight cases, two showed vascular invasions at a distance, five (including the preceding ones) showed invasion of medium-sized blood vessels in the peripheral parts of the lesion, and three showed older invasions in their center; only two had no vascular lesions. To the authors' knowledge, vascular invasion at a distance has been reported only once to date. An inflammatory origin for these cytologically benign lesions remains possible, although a striking resemblance with intravascular fasciitis can also be shown. These lesions should be treated by radical and precocious surgery.
People with intellectual disabilities (PWIDs) are now living longer; thus, the incidence of cancer within this population is increasing. Available data indicate an excess of digestive tract cancers in PWIDs, but colorectal cancer has rarely been specifically studied and has not been extensively reviewed. This is despite risk factors such as being overweight, obesity, and lack of exercise being more frequent in PWIDs. In this article, we examine the literature on the frequency, screening, and treatment of colorectal cancer in PWIDs by as sessing 4 databases, Medline, EBSCO-CINHL, ASSIA, and PsychLIT, from 1970 to February 2017. Findings indicate that the frequency trends slightly higher than that found in the general population. Screening presents a unique opportunity to discover early colorectal cancer, but is underused in PWIDs compared to the general population. Furthermore, the clinical presentation is frequently masked, particularly by challenging behaviours, and colorectal cancer is therefore often diagnosed late, making treatment difficult due to the advanced stage of these tumours. To improve the care of PWIDs, we need more resources to support them and their caregivers, and to increase awareness of the risk factors and signs and symptoms of colorectal cancer.
Malignant solid tumors have rarely been reported in children with Down syndrome (DS) and are not well known. The authors collected from 1980 to 2001 all cases of solid tumors observed in DS patients aged from birth to 19 years within the network of the Société Française d'Oncologie Pédiatrique (SFOP). Only 21 cases were observed, with a peculiar distribution: a lack of intracranial tumors and embryonal neoplasms combined with an overrepresentation of lymphomas and germ cell tumors. The treatment of solid tumors in DS is difficult, due to physical and psychological impairments, different pharmacogenetic profile, and associated malformations.
A case of Pacinian hyperplasia of the right great toe is reported. Pacinian hyperplasia is a rare benign and recently recognized painful lesion composed of an excess of well formed or hyperplastic Pacinian corpuscules, normaly involved in sensory innervation. This lesion that is usually observed in the hand, must be distinguished from nerve tumors harboring onion-bulb structure which are not true well formed Pacinian corpuscules and from Morton neuroma. Pacinian hyperplasia is considered a reactive lesion and not a true neoplasm. To our knowledge, this case is the first described in the foot.
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