There is currently much interest regarding the needs of people affected by non-malignant disease and whether or not these are being met by palliative care services. The evidence available appears to support the conclusion that while there is a general inequality of access, some individuals with non-malignant conditions such as cardiac disease and motor neurone disease are able to access palliative care services more readily than others. Huntington's disease (HD) is a devastating neurological condition of long duration and as such may have a lengthy palliative phase. Consequently, a diagnosis of HD will have a major impact on the quality of life of the affected individual and their family. For carers, an understanding of this challenging disease and its prognosis is essential for the provision of appropriate and effective care. This article reviews the links between HD and palliative care and discusses some of the challenges facing patients, families and health care professionals in adopting a palliative approach in the management of the disease.
This article presents an evaluation of a rapid-response crisis-intervention service, hospice at home (H@H), for patients with advanced cancer. The project took place in Glasgow, UK, between July 1999 and May 2001. An integral part of the (H@H) project was the concurrent evaluation, which attempted to explore a range of service and user outcomes. The service was able to prevent admission to, or facilitate discharge from, institutional care on 62 occasions. The evaluation found significant improvements in some areas of pain and symptom management. High levels of satisfaction were recorded by all service users. A partial cost analysis revealed that the medical and nursing support costs for the (H@H) would have been substantially reduced if throughput had been higher. The (H@H) project team agreed that a valuable lesson learned from the project was the importance of involving all key players from the outset when determining the requirements of a new service initiative.
This article is the first in a series of two which report on the development and evaluation of a rapid response crisis intervention service for patients in the advanced stages of cancer. A number of recent studies have identified the need for rapid response teams who are able to provide palliative and specialist palliative care in the home setting (King et al, 2000; Mantz, 2000; Thomas, 2001). By providing an overview of the relevant literature and describing the experience of developing this scheme the authors' aim is to share good practice with interested professionals who may be contemplating setting up similar schemes. This article outlines the development of a 'hospice at home' scheme until its launch and identifies the strategies used to ensure the early success of the project.
Sixteen cycles of Brentuximab vedotin (BV) after autologous stem cell transplant (ASCT) in high-risk relapsed/refractory classical Hodgkin lymphoma (r/r cHL) demonstrated an improved 2-year progression free survival (PFS) over placebo. However, most patients are unable to complete all 16 cycles at full dose due to toxicity. This retrospective, multicenter study investigated the effect of cumulative maintenance BV dose on 2-year PFS. Data were collected from patients who received at least one cycle of BV maintenance after ASCT with one of the following high-risk features: primary refractory disease (PRD), extra-nodal disease (END), or relapse < 12 months (RL<12) from the end of frontline therapy. Cohort 1 had patients with > 75% of the planned total cumulative dose, cohort 2 with 51 – 75% of dose, and cohort 3 with ≤ 50% of dose. The primary outcome was 2-year PFS. A total of 118 patients were included. Fifty percent had PRD, 29% had RL<12, and 39% had END. Forty-four percent of patients had prior exposure to BV and 65% were in complete remission (CR) before ASCT. Only 14% of patients received the full planned BV dose. Sixty-one percent of patients discontinued maintenance early and majority of those (72%) were due to toxicity. The 2-year PFS for the entire population was 80.7%. The 2-year PFS was 89.2% for cohort 1 (n=39), 86.2% for cohort 2 (n=33), and 77.9% for cohort 3 (n=46) (p = 0.70). These data are reassuring for patients who require dose reductions or discontinuation to manage toxicity.
THE case recorded below is of interest not only on account of the long duration of the intussusception, but also because of the condition found at the first (palliative) operttion, and the discovery at the second operation of a tumour which proved on examination to be a carcinoma.A man, aged 68, had for a year been greatly troubled by conistipation. Three days prior to admission to hospital he had taken a large dose of purgative, and the bowe!s had acted once; there had been no action since, but Dain in the rectum and copious discharge of blood-stained mucus. Vomiting had not occurred. The abdomen was considerably distended, and peristalsis was obvious. Onexmining the rectum the anal sphincters were found to be very lax, and a tense smooth mass was discovered reaching to within half an inob of the external orifice.The patient on overhearingaremark that " there was something to be felt" volunteered the fact that he himself had made that d iscovery over a year previously, and had noticed something inside tle rectum constantly, this discovery coinciding in point of time with the onset of his constipation.Immediate operation was advised; this the patient refused, but changed his mind on the following day, when the symptoms of intestinal obstruction had become more distressing.'The patient was anaesthetized and placed in the lithotomy position, to facilitate a more tthorough -examination. On passing a speculum it was found that the rectal mass was trunk-shaped, aud digital examination failed to reach any attachment to the rectal wall. The ouly possible diagnosis seemed to be chronic intussuseeption causing obstruction, through engorgement brought about by purgation.The patient was placed flat on the operating table and the abdomen opened by retracting the left lower rectus outwards. An intussusception of the sigmoid into the rectum was found, the ensheathing joining the entering layer, at a point about one inch above the recto-sigmoid junction. All the iutestines were greatly distended, the large intestine, as far back as the caecum, being a solid mas of faecal material; this seemed to bear out the patient's statement of the duration of the trouble. All attempts to reduce the intussusception proved of no avail, even thtough one band was placed in the rectum to manipulate its apex. In these circumstances some palliative measure had to be decided on, the choice lying between caecostomy and colostomy. Eventually colostomy was performed through the outer left rectus with the idea that it would give more efficient drainage to the overloaded intestine, and in the event of the patient refusing furtheroperative measures allow him to get about. The colostomy was opened at the end of twenty-four hours by simply cutting across one of the longitudinal bands. The patient got on well, but the discharge of blood-stained mucus from the rectum continued. IDIOsYNCRASY to quinine is much less common than one would gather from the textbooks. One of us has been in the Malay States for twenty years, and the otlier for iore than thirty-fiv...
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