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Journal of Pain and Symptom Management | 2012

The effectiveness of patient-family carer (couple) intervention for the management of symptoms and other health-related problems in people affected by cancer: a systematic literature search and narrative review

Jane B. Hopkinson; Joanne Brown; Ikumi Okamoto; Julia Addington-Hall

CONTEXT Cancer is widely acknowledged to impact on the whole family. Yet, we do not know if there is benefit (or harm) from patient-family carer interventions in the context of cancer care. OBJECTIVES To report a systematic search for and narrative review of patient-family carer interventions tested in the context of cancer care for effect on symptoms and other health-related problems in patients and/or their family members. METHODS A systematic literature search was carried out using Cochrane principles. Searches were of MEDLINE, EMBASE, PsycINFO, and CINAHL databases for reported trials of patient-family carer focused interventions. Outcomes of interest were health indicators; measures of physical, psychological, social, and quality-of-life status of the patient and/or family member(s). Limits were English language; 1998 to March 2010; and adults. Relevant information was extracted, quality assessed using the Cochrane Collaborations tool for assessing risk of bias, and presented as a narrative synthesis (meta-analysis was not appropriate). RESULTS The review found no empirically tested interventions for family groups (patient and two or more family members), but 22 interventions for patient-family carer partnerships (couple interventions) tested in 23 studies and reported in 27 publications. Recruitment and attrition were problematic in these studies, limiting the reliability and generalizability of their results. CONCLUSION In the trials of cancer couple interventions included in the review, a pattern emerged of improvement in the emotional health of cancer patients and their carers when the intervention included support for the patient-family carer relationship. Further investigation is warranted.


American Journal of Kidney Diseases | 2015

Understanding by older patients of dialysis and conservative management for chronic kidney failure

Sarah Tonkin-Crine; Ikumi Okamoto; Geraldine Leydon; Fliss Murtagh; Ken Farrington; Fergus Caskey; Hugh Rayner; Paul Roderick

Background Older adults with chronic kidney disease stage 5 may be offered a choice between dialysis and conservative management. Few studies have explored patients’ reasons for choosing conservative management and none have compared the views of those who have chosen different treatments across renal units. Study Design Qualitative study with semistructured interviews. Settings & Participants Patients 75 years or older recruited from 9 renal units. Units were chosen to reflect variation in the scale of delivery of conservative management. Methodology Semistructured interviews audiorecorded and transcribed verbatim. Analytical Approach Data were analyzed using thematic analysis. Results 42 interviews were completed, 4 to 6 per renal unit. Patients were sampled from those receiving dialysis, those preparing for dialysis, and those choosing conservative management. 14 patients in each group were interviewed. Patients who had chosen different treatments held varying beliefs about what dialysis could offer. The information that patients reported receiving from clinical staff differed between units. Patients from units with a more established conservative management pathway were more aware of conservative management, less often believed that dialysis would guarantee longevity, and more often had discussed the future with staff. Some patients receiving conservative management reported that they would have dialysis if they became unwell in the future, indicating the conditional nature of their decision. Limitations Recruitment of older adults with frailty and comorbid conditions was difficult and therefore transferability of findings to this population is limited. Conclusions Older adults with chronic kidney disease stage 5 who have chosen different treatment options have contrasting beliefs about the likely outcomes of dialysis for those who are influenced by information provided by renal units. Supporting renal staff in discussing conservative management as a valid alternative to dialysis for a subset of patients will aid informed decision making. There is a need for better evidence about conservative management to support shared decision making for older people with chronic kidney failure.


Journal of Pain and Symptom Management | 2010

The Deliverability, Acceptability, and Perceived Effect of the Macmillan Approach to Weight Loss and Eating Difficulties: A Phase II, Cluster-Randomized, Exploratory Trial of a Psychosocial Intervention for Weight- and Eating-Related Distress in People with Advanced Cancer

Jane B. Hopkinson; Deborah Fenlon; Ikumi Okamoto; David Wright; Issy Scott; Julia Addington-Hall; Claire Foster

CONTEXT Up to 80% of people with cancer will develop weight loss and anorexia during the advanced stages of the disease. The Macmillan Weight and Eating Studies (2000-2009) have used the Medical Research Council complex interventions framework to develop the first psychosocial intervention for weight- and eating-related distress (WRD and ERD) in people with advanced cancer and their carers: The Macmillan Approach to Weight and Eating (MAWE). OBJECTIVES This article reports the findings of a Phase II trial of MAWE that investigated its deliverability, acceptability, and patient-perceived effect on WRD and ERD. METHODS The Phase II trial, conducted in 2006-2007, was of cluster-randomized design, with two community palliative care teams randomized to different arms. It used mixed methods to compare an intervention group (n=25), the MAWE group, which was supported by MAWE-trained clinical nurse specialists, with a group that received usual care (n=25), the control group. RESULTS MAWE was deliverable in clinical practice and acceptable to patients. Unplanned exposure of the MAWE group to the intervention before an initial measure of WRD and ERD proved problematic to the trial process. Despite this, quantitative and qualitative analyses indicate that MAWE does not exacerbate WRD and ERD and may help patients with advanced cancer live with the weight loss and anorexia that are the symptoms of cancer cachexia syndrome. CONCLUSION A follow-on randomized controlled trial of MAWE is warranted but should be of a revised design.


Supportive Care in Cancer | 2011

What to eat when off treatment and living with involuntary weight loss and cancer: a systematic search and narrative review

Jane B. Hopkinson; Ikumi Okamoto; Julia Addington-Hall

PurposeThe aim of this study was to report a systematic search and narrative review of the evidence base that can inform dietary advice for patients off treatment living with cancer cachexia syndrome (CCS).MethodsSearches were conducted in MEDLINE, EMBASE, PsycINFO and CINAHL databases for publications about diet and cancer patients off treatment with symptoms of CCS. The following limits were applied: English language, from September 1998 to September 2008 and adults. In addition, a hand search included the reference lists of papers identified. Seven hundred and eighteen abstracts were assessed against inclusion/exclusion criteria and 88 were selected for full text independent examination by two researchers. Information from 48 papers was extracted, quality assessed, thematically analyzed and presented as a narrative synthesis.ResultsTwo dominant perspectives emerged on what should be eaten by weight-losing cancer patients. The majority of authors advocated a nutrient-dense diet, facilitated by nutritional counselling. The alternative approach was to advise the patient to ‘eat what they want’. There is little robust evidence to justify either approach as able to deliver on the range of physical and psychosocial objectives that they aim to achieve.ConclusionA new model for the delivery of nutritional care may benefit cancer patients (off treatment) living with weight loss. The proposed model integrates the two identified perspectives to facilitate optimal food intake taking into account the patients (1) disease symptoms and treatment side effects (2) emotional adaptation to illness and (3) social circumstances. Research is needed to establish which of these obstacles to eating can be changed for which patient groups to improve patient outcomes.


Health Expectations | 2012

Impact of cancer on everyday life: a systematic appraisal of the research evidence

Ikumi Okamoto; David Wright; Claire Foster

Objective  To conduct a systematic appraisal of the published literature reviews related to the impact of cancer on everyday life. This theme was identified as the top priority area for research by participants in the Macmillan Listening Study, which was the first UK‐wide public consultation exercise to identify patients’ priorities for cancer research.


BMJ Open | 2017

Intermittent catheter users’ symptom identification, description and management of urinary tract infection: a qualitative study

Ikumi Okamoto; Jacqui Prieto; Miriam Avery; Katherine N. Moore; Mandy Fader; Samantha Sartain; Bridget Clancy

Objectives To elucidate the views of intermittent catheter (IC) users regarding urinary tract infection (UTI) symptom presentation, terminology for describing signs and symptoms, the cause of UTI and management strategies. Design Qualitative study with semi-structured interviews. The transcribed text was analysed thematically. Setting 12 general practitioner (GP) surgeries in Hampshire and Dorset, UK. Participants A convenience sample of 30 IC users, aged over 18, using IC for at least 3 months who had at least one self-reported UTI since starting IC. Results Participants reported a variety of signs and symptoms, such as urine cloudiness and smell, as indicators of UTI. The terms used often differed from those in the modified National Institute on Disability and Rehabilitation Research (NIDRR) symptom set. IC users had difficulty distinguishing possible UTI symptoms from those of their comorbidities. They expressed uncertainty about the cause of UTI, often attributing it to poor hygiene and lifestyle behaviours. Whereas some viewed UTI as an expected consequence of IC use that could be self-managed, others felt more concerned and were more reliant on their GP for support. A range of management strategies was described, including drinking more fluids, increased attention to personal hygiene and self-medicating with antibiotics. Conclusions There is uncertainty among IC users about UTI signs and symptoms and when to seek help. Individual accounts of UTI fitted generally within the modified NIDRR descriptors but adopted less technical and more ‘lay’ language. IC users’ descriptions of UTI signs and symptoms can lack precision, owing partly to the presence of underlying health conditions. This, together with differing levels of concern about the need to seek help and self-medication with antibiotics, presents challenges for the GP. This study provides the basis for developing a self-help tool which may aid identification of UTI and enhance communication with healthcare professionals.


Archive | 2010

What is an appropriate diet for people living with cancer and involuntary weight loss: A systematic review

Jane B. Hopkinson; Ikumi Okamoto; Julia Addington-Hall

Free Papers 1 – Long Term Conditions I End of life care for people with dementia: an evaluation of implementation of the GSF and LCP Susan Ashton Liverpool John Moores University Bob McClelland Liverpool John Moores University Brenda Roe Edge Hill University Deborah Mazhindu Liverpool John Moores University Robert Gandy Liverpool John Moores University Background: End of Life care needs of older people with advanced dementia were identified by North West NHS as a priority. Implementation of advance care planning by use of Gold Standards Framework (GSF) and Liverpool care of the Dying Pathway (LCP) was studied in five long term care ‘pilot’ sites in Greater Manchester. Aims: To determine the effects of introducing GSF and LCP from the perspectives of staff, service users, family caregivers and practitioners involved in the care of older people with dementia. Methods: A case study design using mixed methods was used in four nursing care homes and one NHS (mental health) ward. A wide range of views and experiences were documented (n1⁄4 200). A self completed survey of all care staff; General Practitioners and other Multi-disciplinary team members; Interviews with the relatives and senior nursing care staff; focus groups with key care staff; Economic evaluation of potential costs/benefits in preventing unscheduled hospital admissions. Results: Qualified staff perceived that the use of the end of life care tools and staff education improved their assessment skills of the physical and cognitive decline and management of the dying resident. Anticipatory prescribing was viewed as a key element in the management of pain and other distressing symptoms. GP’s were more confident that care staff could assess and manage symptoms and use medication appropriately. Staff were more confident that residents achieved their preferences for place of death at home and reduced inappropriate hospital admissions due to advance care planning undertaken with residents, relatives and GP’s. Conclusion: General agreement by care staff and the wider MDT that the use of GSF/LCP tools promoted staff confidence to assess monitor and meet the needs of dying residents, enabled good communication with indicative economic benefits for reducing hospital admissions. A national survey of specialist palliative care services for patients with end stage renal disease Stephanie Gomm Salford Royal NHS Foundation Trust, Salford, UK Hospital Specialist Palliative Care Team Katie Hobson Hospital Specialist Palliative Care Team, Salford Royal NHS Foundation Trust, Salford, UK Fliss Murtagh Department of Palliative Care, Policy and Rehabilitation, Kings College London, London, UK Ann Louise Caress School of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, UK Background: The National Service Framework for Renal Services Part 2 (2005) aimed to improve end of life care for people with ESRD and the Kidney End of Life Care Framework (2009) sets out how to achieve this. A survey of UK renal units (2004) reported only 38% and 20% had usual or regular involvement with hospital SPCS and hospices respectively. Aims: Assess the current provision of SPCS for adult patients with ESRD in the UK and determine the factors that affect SPCS provision. Method: A questionnaire was sent to the lead clinician for all UK adult hospital, hospice and community SPCS, identified from the Hospice and Palliative Care Directory 2008. Non-responders were mailed again after 5 weeks. Quantitative descriptive statistics and qualitative thematic analysis were performed. Results: 318/611 (52%) questionnaires were returned. 96% stated SPCS have a role in caring for patients with ESRD. 281/318 (88%) accepted referrals and 185/281 (66%) reported that ‘‘none or few were referred’’. Only 7% and 17% of respondents used specific ESRD referral and treatment guidelines respectively; whereas 79% used the Liverpool Care Pathway for the Dying Patient. 7% undertook joint renal and SPCS multi-disciplinary team (MDT) meetings and 3% held joint out-patient clinics. 128/ 318 (40%) respondents proposed initiatives to improve palliative care for ESRD patients. Of the 214 proposed initiatives, 22% were concerning ‘‘better communication and working links with renal teams’’ and 23% were around ‘‘education of both SPCS and renal teams’’. Conclusions: The majority of SPCS accept ESRD patients but limited numbers are referred. Respondents indicated this barrier could be addressed by closer collaboration, better communication and education between renal and SPCS. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include:use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics. Do people with Parkinson’s disease need palliative care? George Kernohan Professor of Health Research, University of Ulster Mary Waldron Research Assistant, University of Ulster Felicity Hasson Senior Lecturer, University of Ulster Barbara Cochrane Director of Medical and Care Services, Northern Ireland Hospice Helen Chambers Director of Clinical Services, Northern Ireland Hospice Susan Foster Lecturer in Palliative Care, Northern Ireland Hospice and University of Ulster Background: Palliative care involves the holistic care of people who live with incurable disease, to help themmaintain a good quality of life and it has been argued that palliative care services should be extended to all who need them, whatever their diagnosis. Although it is acknowledged that patients with PD warrant a palliative care approach (BuntingPerry 2006; Hudson et al., 2006), they are not automatically provided with palliative care and rarely benefit from hospice care (Kristjanson et al., 2005).Objective: To explore the perceptions of health and social care professionals on the palliative care needs of people with PD. Methods: A range of health and social care professionals (n1⁄4 111), including doctors, nurses, allied health professionals, social workers and voluntary sector workers took park in individual qualitative semistructured interviews and focus group discussions. The data was then analysed for thematic content. Results: Participants held mixed views on palliative care ranging from end of life care to holistic care beginning at diagnosis. The palliative care needs of people with PD were identified as physical (symptom and pain control, optimising mobility, avoiding falls and communication support) psychological (dealing with loss of independence, depression and anxiety) and practical (information and advice on benefits and provision of mobility aids). Participants were unsure when or how to introduce PC to patients with PD. Furthermore, few PC health and social care professionals in the sample had worked with people specifically for their PD. Conclusion: People with PD have PC needs but it is difficult to decide when and how to introduce PC into the patient’s care. Although this was a limited scale investigation, involving one time-point, it raises issues for further research into this area. The Author(s), 2010. Reprints and permissions: sagepub.co.uk/journalsPermissions.nav 10.1177/0269216310363376 Free Papers 2 – Prognostic Indicators Prognostic factors for survival of terminally ill cancer patients in Shanghai, China Gu Xiao li Palliative Care Department Shanghai Cancer Center Fudan University Cheng Wen Wu Palliative Care Department Shanghai Cancer Center udan University Purpose: The objective of the study was to reveal the factors related with the survival of terminally ill cancer patients who received palliative care in Shanghai, China. Methods: 117 patients who enrolled and died in the Palliative Care Department, Fudan University during March, 2007 to March, 2009 were included in this study. Information including general demographic information, Karnofsky performance score (KPS), symptoms present, biological markers were collected. Survival was measured from time of enrollment to death. The Kaplan-Meier method and the log rank test were used to determine the corresponding factors with survival. Variables with P< 0.05 were included in the Cox regression model to exam the independent prognostic factors. Different survival length of groups divided by different prognostic index was compared by log rank test. Results: In 117 patients, with a median survival of 16 days, 16 factors were found to be related with the survival according to univariate analysis (p< 0.05). There were no significantly association between the general characteristics such as age, gender or cancer site and metastasis site. The related factors were Karnofsky Performance Score (p< 0.001), dyspnea (p1⁄4 0.043), serious insomnia (p1⁄4 0.015) and anorexia (p1⁄4 0.001), bleeding symptoms (p1⁄4 0.029) and cognitive impairment (p1⁄4 0.001). Some biological markers such as low hemoglobin (p1⁄4 0.010), low lymphocyte percentage (p1⁄4 0.024), high neutrophil percentage (p1⁄4 0.037), high total bilirubin (p1⁄4 0.001), high alkaline phosphatase (p1⁄4 0.002), high aspartate aminotransferase (p< 0.001), high lactate dehydrogenase (p1⁄4 0.003), low serum albumin (p1⁄4 0.004), potassium (p1⁄4 0.023) and calcium (p1⁄4 0.038). The multivariate analysis selected seven independent factors: Karnofsky Performance Score <40, serious insomnia, bleeding symptom, low hemoglobin, high aspartate aminotransferase, low serum albumin and abnormal potassium. Conclusion: The study shows the clinical survival prognostics with Chinese characteristics. The combination of the seven factors maybe useful but studies in this area deserve further investigated. Prognosis prediction by Palliative Prognostic Index (PPI): a prospective multi centre study Sivakumar Subramaniam EllenorLions Hospice, Northfleet, Kent, UK Andrew Thorns Pilgrims Hospice, Thanet, Kent, UK Thiru Thirukumaran Pilgrims Hospice, Ashford, Kent, UK Thomas Osborne Pilgrims Hospice, Canterbury, Kent, UK Ridout Martin Department of Statistics, UniversBackground: Up to 80% of people with cancer experience involuntary weight loss (1,2). This symptom of cancer cachexia syndrome (CCS) is associated with morbidity and mortality. However, feeding has little effect on weight and survival. There is no current consensus on appropriate diet for people living with CCS. Purpose: To report a systematic review of the evidence base that can inform dietary advice for patients living with CCS. Methods: Searches were conducted of MEDLINE, EMBASE, PsycINFO and CINAHL databases and reference lists, for publications about diet and cancer patients off treatment with symptoms of CCS. Limits were English language; 1998 to 9/2008; adults. 718 abstracts were assessed against nclusion/exclusion criteria and 90 were selected for full-text independent examination by two researchers. Information relevant to the review question was extracted, quality assessed, thematically analyzed and presented as a narrative description. Results: Sixty publications were included in the review. Two dominant perspectives emerged on what should be eaten by cancer patients living with involuntary weight loss. The majority of authors advocated a nutrition dense diet, achieved by nutritional counselling to i) educate on fortification of foods and ii) to advise frequent feeding. The alternative approach was to advise the patient to ‘eat what they want’. There is little robust evidence to justify either approach as able to deliver on the objectives they aim to achieve. Research is needed to establish which sub-groups of weight losing cancer patients can benefit from nutritional support. Conclusion: Feeding may not be futile if combined with other interventions and if evaluated against outcomes such as distress. A new model for the assessment and delivery of nutritional care may help patients living with CCS to optimize nutritional intake within the confines of their i/ disease process and treatment ii/ beliefs about food iii/ social resources iv/ coping approach.


BMJ Open | 2018

Reuse of intermittent catheters: A qualitative study of IC users’ perspectives

Miriam Avery; Jacqueline Prieto; Ikumi Okamoto; Samantha Cullen; Bridget Clancy; Katherine N. Moore; Margaret Macaulay; Mandy Fader

Objectives To explore the views of intermittent catheter (IC) users regarding the advantages and disadvantages of single-use or reuse of catheters. Design Qualitative study with semi-structured interviews. The interviews were recorded, transcribed and analysed thematically. Setting Participant’s own homes in Hampshire and Dorset, UK. Participants A convenience sample of 39 IC users, aged 23–86 years, using IC for at least 3 months. Results The analysis revealed four main themes: concerns regarding risk of urinary tract infection (UTI); cleaning, preparation and storage; social responsibility; practicalities and location. The main concern was safety, with the fear that reuse could increase risk of UTI compared with single-use sterile catheters. If shown to be safe then around half of participants thought they might consider reusing catheters. The practicalities of cleaning methods (extra products, time and storage) were considered potentially burdensome for reuse; but for single-use, ease of use and instant usability were advantages. Always having a catheter without fear of ‘running out’ was considered an advantage of reuse. Some participants were concerned about environmental impact (waste) and cost of single-use catheters. The potential for reuse was usually dependent on location. The analysis showed that often the disadvantages of single-use could be off-set by the advantages of reuse and vice versa, for example, the need to take many single-use catheters on holiday could be addressed by reuse, while the burden of cleaning would be obviated by single-use. Conclusions If shown to be safe with a practical cleaning method, some participants would find reuse an acceptable option, alongside their current single-use method. The choice to use a mixture of single-use and reuse of catheters for different activities (at home, work or holiday) could optimise the perceived advantages and disadvantages of both. The safety and acceptability of such an approach would require testing in a clinical trial.


BMJ | 2014

Using the Clinical Research Network for psychosocial cancer research: lessons learned from two observational studies.

Penny Wright; Deborah Fenlon; Helen Jones; Claire Foster; Laura Ashley; Kim Chivers Seymour; Galina Velikova; Ikumi Okamoto; Julia Brown

Background Patient recruitment to psychosocial oncology research has increased but the many studies have been single-site or small-scale. The National Institute for Health Research Clinical Research Network, supports National Institute for Health Research portfolio studies through provision of research staff for recruitment and follow-up. These studies are usually clinical trials of an investigational medicinal product. Psychosocial researchers have little used this resource. Process We report the processes followed and experiences of two psychosocial research teams who recently used the Clinical Research Network, to undertake patient recruitment to two prospective observational studies: electronic Patient-reported Outcomes from Cancer Survivors study (ePOCS) and the ColoREctal Wellbeing study (CREW). Both research groups employed different approaches to using Clinical Research Network support. Outcomes ePOCS secured Comprehensive Local Research Networks funding to appoint ePOCS-specific study research nurses. CREW obtained research support through the National Institute for Health Research Cancer Research Network. Recruitment targets were met (ePOCS n=636; CREW n=1055) despite logistical, administrative and bureaucratic challenges in setting up the studies. Research nurses feedback was mainly positive (ePOCS study only). Top tips for establishing and running psychosocial studies with Clinical Research Network staff are provided and suggestions given for advancing multicentre complex psychosocial studies. Conclusions Some challenges were similar to those in delivery of clinical trials of an investigational medicinal product. The pros and cons of being involved in ePOCS from the research nurse perspective are also described. Overall the approaches used were successful with both studies reaching their recruitment targets.


Archive | 2010

The effect of psychosocial intervention for cancer patient-carer dyads on symptom experience: a systematic review

Jane B. Hopkinson; Ikumi Okamoto; Julia Addington-Hall

Most of palliative patients want to be taken care of at home by their general practitioner (GP) until the moment they die. GP’s need to continuously educate themselves in order to be able to perform this task. We want to know the learning needs of GP’s and the preferences and barriers they have towards continuing medical education (CME) in palliative care. We also want to know if organizers of CME share these insights and take them into account.Aim: After two large scale studies on medical end-of-life practices in Belgium in 1998 and 2001, we conducted a follow-up study in 2007 to investigate trends in frequency and characteristics of these practices and differences before and after the enactment of the laws on palliative care and on euthanasia in 2002. Methods: We drew a stratified at random sample of 6927 cases from all deaths that occurred between June and November 2007 in Flanders, Belgium and mailed questionnaires about medical end-of-life practices to the certifying physicians. Results: Response rate was 58.4%. In 2007, the rate of intensified pain alleviation in Flanders increased from 18.4% of all deaths in 1998 and 22.0% in 2001 to 26.7% in 2007, and that of non-treatment decisions from 14.6 % in 2001 to 17.4% in 2007. In 1.9% of all deaths physicians reported euthanasia, a rate that was higher than that in 1998 (1.1%) and 2001 (0.3%). The rate of lethal drug use without the patient’s explicit request was lower in 2007 (1.8% of all deaths) than that in 1998 (3.2%), but similar to that in 2001 (1.5%). No shift in characteristics of patients whose death was the result of using these drugs was found. In 14.5% of all deaths in 2007, physicians reported continuous and deep sedation until death, which was substantially more often than in 2001 (8.2%). In 2007, physicians discussed medical end-of-life practices more often with competent patients, relatives and colleagues than in 1998. Conclusion: The enactment of the Belgian laws on palliative care and on euthanasia was followed by an increase in all types of medical end-of-life practices, with the exception of the use of lethal drugs without patient’s explicit request. No shift toward the use of life-ending drugs in vulnerable patient groups was observed. The substantial increase in the frequency of deep sedation demands more in-depth research. Funding: Institute for the Promotion of Innovation by Science and Technology - Flanders.Aim: This study investigates attitudes towards physician-assisted death in minor patients of all physicians involved in the treatment of dying minor patients in Flanders, Belgium, and how these attitudes are related to physicians’ and patients’ characteristics and actual medical end-of-life practices. Method : Physicians signing death certificates of all 250 patients aged 1-17 years who died between June 2007 and November 2008 in Flanders, Belgium, were sent an anonymous questionnaire on their attitudes and end-of-life practices in the death concerned. Results : Response was obtained from 124 physicians for 71% of eligible cases (N=149). Sixty-nine percent of physicians favors an extension of the Belgian law on euthanasia to include minors, 27% thinks this should be done by setting clear age limits. Sixty-one percent thought parental consent is required before taking life-shortening decisions and 52% found the administration of a lethal drug to a non competent minor on parental request was acceptable. Cluster-analysis yielded a cluster acceptant of (68% of physicians) and a cluster (32% of physicians) reluctant towards physician-assisted death in minors. Controlling for physician specialty and patient characteristics, acceptant physicians were more likely to engage in various practices with a (co-)intention of shortening the patient’s life than reluctant physicians. Conclusion : A majority of Flemish physicians involved in the care of dying children seems to accept physician-assisted dying in children under certain circumstances and favors an amendment to the euthanasia law to include minor patients. The approach favored is assessing competency rather than setting an arbitrary age-limit. These stances may encourage policy-makers to develop guidelines for medical end-of-life practices in minors that address specific challenges arising in this patient group, including how children and parents should be involved in the decision-making process.Background: Up to 80% of people with cancer experience involuntary weight loss and difficulty eating. These symptoms of cancer cachexia syndrome can be experienced as distressing by both patients and their carers. The most effective way of managing weight- and eating-related distress is yet to be established. Aims: To report the first systematic review of the effect on symptom experience of psychosocial interventions offered to cancer patient-carer dyads. Methods: Searches were conducted of MEDLINE, EMBASE, PsycINFO and CINAHL databases, for studies of experimental design testing non-pharmacological interventions for patient-carer dyads experiencing cancer related problems. Limits were English language; 1998 to 9/2008; adults. 1534 abstracts were assessed against inclusion/exclusion criteria using a process involving two reviewers. Sixty publications were selected for full-text examination and 30 included in the review. Information relevant to the review question was extracted, quality assessed using the Cochrane Collaboration’s tool for assessing risk of bias, and presented as a narrative synthesis. Results: The 30 reviewed studies investigated patient and carer outcomes from interventions focused on i/ patients, ii/ carers, iii/ models of service delivery, iv/ couples. Generally, when a clearly defined non-pharmacological intervention was tested a beneficial effect was found. Few couple-focused interventions have been tested empirically. In two of the three studies that compared a couple with individual focused intervention, the couple focus was found superior (no effect was found in the third, lower quality, study). Conclusion: Couple based psychosocial interventions may have benefit for cancer patient-carer dyads. Further investigation is warranted of couple focused intervention for patient-carer dyads living with weight-and eating-related distress.number: 2 Abstract type: Plenary The European Pharmacogenetic Opioid Study (EPOS): Influence from Genetic Variability on Opioid Use in 2209 Cancer Pain Patients Klepstad P., Fladvad T., Skorpen F., Bjordal K., Caraceni A., Dale O., Davies A., Kloke M., Lundstrom S., Maltoni M., Radbruch L., Sabatowski R., Sigurdadottir V., Strasser F., Fayers P., Kaasa S., The European Palliative Care Research Collaborative (EPCRC) and The European Association for Palliative Care Research Council (EAPC-RN) Norwegian University of Science and Technology, Medical Faculty, Trondheim, Norway, Norwegian University of Science and Technology, Trondheim, Norway, Oslo University Hospital, Oslo, Norway, National Cancer Institute, Milan, Italy, The Royal Marsden NHS Foundation Trust, London, United Kingdom, Kliniken Essen-Mitte, Essen, Germany, Stockholms Sjukhem Foundation, Department of Palliative Medicine, Stockholm, Sweden, Valerio Grassi Hospice, Forli, Italy, RWTH Aachen University, Aachen, Germany, University Hospital ‘Carl Gustav Carus’ Dresden, Dresden, Germany, Landspitali University Hospital, Reykjavik, Iceland, Oncology and Palliative Care Center, St Gallen, Switzerland, Department of Public Health University of Aberdeen, Aberdeen, United Kingdom Background: Cancer pain patients vary in opioid doses. Preclinical and clinical studies suggest that opioid efficacy is related to genetic variability. However, the studies have small samples, findings are not validated or replicated, and some candidate genes are not studied. This is the first large population study to assess the associations of genetic variability with opioid doses using a confirmatory validation population. Methods: 2209 adult Caucasian cancer patients using a WHO step III opioid were included at 20 centers in 11 European countries. SNPs in genes reported to influence opioid efficacy or with a putative influence on opioid mechanisms were analyzed (SNPlex Genotyping System). Non-genetic factors that predicted opioid dose (pain, time on opioids, age, gender, Karnofsky performance status (KPS) and bone or CNS metastases) were included as covariates. The patients were randomly divided into one development sample, and one validation sample used for confirmatory tests on the SNPs initially detected. Results: Mean age was 62 years, mean KPS was 59 and mean average pain intensity was 3.5. The patients used morphine (n=830, mean 202 mg/24h), oxycodone (n=446, mean 141 mg/24h), fentanyl (n=699, mean 78 mg/h) or other opioids (n=234). In the primary analyzes none of 123 SNPs in the genes OPRM1, OPRD1, OPRK1, ARRB2, GNAZ, HINT, Stat6, ACBB1, COMT, HRH1, ADRA2A, MC1R, TACR1, GCH1, DRD2, DRD3, HTR3A, HTR3B, HTR 2A, HTR3C, HTR3D, HTR3E, HTR1 or CNR1 showed significant associations with opioid dose in both the development and the validation analyzes. Conclusion: Genetic variability in 123 SNPs in 25 candidate genes did not predict the need for opioids in 2209 cancer pain patients. The study demonstrates the importance to validate findings obtained in genetic association studies in order to avoid the report of spurious associations. More comprehensive results, interpretations and future directions for gene symptom interactions EPOS analyses will be presented. Abstract number: 3 Abstract type: Plenarynumber: 3 Abstract type: Plenary Does Increasing Advance Care Planning Reduce Terminal Hospitalizations among Nursing Home Residents? Teno J.M., Gozalo P., Mitchell S., Bynum J., Dosa D., Mor V. Brown University, Community Health, Providence, United States, Harvard Medical School, Boston, United States, Dartmouth College, Hanover, United States Objective: Terminal hospitalizations are costly and often avoidable with appropriate advance care planning (ACP). This study examined changes in ACP as measured by written DNR orders in US Nursing Homes (NH) and whether changes in facility rate of DNR orders is associated with reduction in terminal transfers of NH residents to die in a hospital. Design, setting, and participants: Nursing home panel study of whether increasing rates of DNR orders is associated with reductions in terminal hospitalizations controlling for changes in facility characteristics (staffing, use of NP/PA, case mix of nursing residents, admission volume, racial composition, payer mix). Main outcomes measures: Facility rate of terminal hospitalizations in the last 7 days of life between 1999 and 2007. Results: The average facility rate of terminal hospitalizations was 15.7% with some fluctuation between 1999 (15.4) and 2007 (14.9%). Nursing homes with initially low rates of DNR orders that increased to higher rates had lower terminal hospital admission rates in 2007 (9.9%) than facilities with continuously low DNR rates (20.7%). Even after applying a multivariate fixed effect model with an instrumental variable, the effect of DNR order rate on terminal hospitalization was .049 (95% CI -.044, -.055) indicating that for every 10% increase in DNR orders there was 0.49% decrease in terminal hospitalizations. This rate an be compared to the increase of .55% in the terminal hospitalization rate when a NH became disproportionately dependent on Medicaid funding or the .37% decrease in terminal hospitalization rate associated with adding a nurse practitioner to the clinical staff complement. Conclusion: Nursing homes that improved advance care planning practices as measured by facility rate of DNR orders revealed significantly lower rates of terminal hospitalizations. This research was funded by the US National Institute of Aging, that is part of the US National Institute of Health. Research into the cognitively impaired Abstract number: 5 Abstract type: Invited lecturenumber: 5 Abstract type: Invited lecture Acute Cognitive Failure and Delirium in Palliative Care: The Role of Opioid Analgesics and Other Potentially Reversible Causes Palliative Medicine 2010; 24: S5 S229 ! The Author(s), 2010. Reprints and permissions: sagepub.co.uk/journalsPermissions.nav 10.1177/0269216310366390 Gagnon P., Gaudreau J.-D. Centre Hospitalier Univerisitaire de Québec HDQ, Psycho-oncologie, Québec, QC, Canada, Université Laval, Faculty of Pharmacy, Québec, QC, Canada, Université Laval, Faculty of Pharmacy and Department of Psychiatry, Québec, QC, Canada Aim: Review the associations between opioids, psychoactive medications, and other potentially reversible causes of delirium in palliative care. Methods: Data were obtained from three prospective studies conducted at our center and from a critical review of the literature. Two prospective observational studies were conducted to measure delirium incidence and associated factors. Another multicenter study of delirium prevention in terminal cancer was conducted among seven palliative care units in Canada. The Nursing Delirium Screening Scale, the Confusion Rating Scale and the Confusion Assessment Method were used. Results: The literature review remains equivocal as to which medication is clearly involved in inducing delirium. In two of our studies, opioids were associated with the development of delirium, especially at a dosage over 90 mg. of morphine equivalent per day. Corticosteroids, at a threshold of 15 mg. dexamethasone equivalent per day, and Benzodiazepines, above 2 mg. of lorazepam equivalent per day, were also associated with delirium in one of our study. However, the role of benzodiazepines remains controversial as it was associated with a lower incidence of symptoms of hyperactive delirium in our multicenter study. Other drugs, such as co-analgesics and anticonvulsants, are also often suspected as being delirogenic. Other reversible causes, such as alcohol or benzodiazepine withdrawal, hypercalcemia, infections, and pulmonary embolism must also be considered. These factors are especially critical in patients with past history of delirium who are at a higher risk. Conclusion: Opioids remain the most frequent reversible cause of delirium in palliative care, especially at higher dosage. Benzodiazepines and corticosteroids are also often identified as potential reversible causes of delirium in studies, as are many other drugs and pathologies. All these factors should be carefully considered in delirium prevention, especially in patients at a higher risk. Epidemiology and Policy Abstract number: 8 Abstract type: Oralnumber: 8 Abstract type: Oral Why Are Men at Increased Risk of Depression Compared to Women in Palliative Care? Hayes R.D., Lee W., Rayner L., Price A., Hotopf M. Institute of Psychiatry / King’s College London, General Hospital Psychiatry, London, United Kingdom Aim: To identify potential explanatory factors for the excess depression found among men in palliative care to identify clinically relevant risk markers for depression in men and women. Methods: 300 participants recruited as new patients of a large hospice in South East London were interviewed. Depression was measured using a validated instrument: the Primary Care Evaluation of Mental Disorder (PRIME-MD). Further data were collected during the interview and from case records. Results: The higher prevalence of depression in men was not explained by a higher prevalence of particular types of cancer in men nor due to confounding by age, ethnicity, cancer stage, social support, religious beliefs, loss of dignity and time until death. Interactions between gender and other variables were examined. Needing any help with daily tasks was significantly associated with depression in men only. This association was not affected by marital status, level of social support, ethnicity or age. We also observed a dose response relationship between the degree to which men needed help with basic tasks and the proportion of men who were depressed (P for trend=0.01), but the reverse trend for women (P=0.04) (see table).

Collaboration


Dive into the Ikumi Okamoto's collaboration.

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Hugh Rayner

Heart of England NHS Foundation Trust

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Ken Farrington

University of Hertfordshire

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Paul Roderick

University of Southampton

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Fliss Murtagh

Hull York Medical School

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Caroline Eyles

University of Southampton

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Donal O’Donoghue

Salford Royal NHS Foundation Trust

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