Project staff
- Joe Low, Louise Jones. Marie Curie Palliative Care Research Unit
- Glenn Smith. Imperial College London
- Aine Burns. Royal Free Hampstead NHS Trust
Funder
Marie Curie Cancer Care
Start/finish date
September 2006 – June 2007
Background
The incidence of ESKD is rising in the Western world. The onset of ESKD, particularly starting dialysis, involves a change in lifestyle for both patients and close persons. As renal function deteriorates, patients may require additional support, and it is often family members who provide this. Good family support is associated with successful adaptation to dialysis and compliance with dietary restrictions. Conversely, one of the main factors associated with patients discontinuing dialysis is when they perceive they are a ‘burden’ to close persons. There is therefore a need for health professionals to communicate effectively with family members and for appropriate bereavement support to be provided for these close persons.
Aims
- To identify and outline: the impact of ESKD on close persons; the impact on close persons when patients are being provided with end of life care; and health care provision for close persons.
Method
A systematic literature search using Medline, Embase, CINAHL, PsycINFO and AMED was conducted, and 31 relevant studies were identified. These studies explored the impact on close persons and their social life, the factors affecting their psychological health, and end of life issues.
Results
Evidence was found to suggest that onset of ESKD may have a negative impact on some close persons with an increase in their sense of responsibility and poorer quality of life. Studies exploring end of life issues found that close persons reported little long term distress resulting from the patient’s death and that health professionals’ routine visits were the best time to discuss patients’ preferences about end of life care. No studies looked at how health services have supported, specifically, close persons of patients with ESKD.
Conclusions
Future studies should aim to explore the interaction of health services with close persons and how end of life issues may affect close persons.
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Project staff
- Joe Low, Louise Jones, Adrian Tookman, Emma Daniells, Veronica Brough. Marie Curie Palliative Care Research Unit
- Michael King. Department of Mental Health Sciences, UCL
- Sue Gessler. Gynaecology/Oncology, Elizabeth Garrett Anderson Hospital, UCLH
Funder
Marie Curie Cancer Care
Start/finish date
September 2005 - November 2006
Background
NICE guidelines on supportive and palliative care (2004) stipulate the importance of health care professionals to screen for psychological distress in cancer patients. The clinical need for a short tool which is easy for patients to complete has led to the development of a single item Distress Thermometer. Initially developed in the USA, the Distress Thermometer has since been validated in several countries including Japan, Spain and Australia, but no validation has been conducted in the UK.
Aims
- To assess the psychometric properties of the Distress Thermometer in a clinically relevant UK sample and its acceptability amongst patients with supportive and palliative care needs.
Method
Out-patients from one palliative care and five oncology out-patient clinics completed four questionnaires: the Distress Thermometer, Hospital Anxiety & Depression Scale (HADS), General Health Questionnaire (GHQ)-12 and Brief Symptom Inventory (BSI)-18 at baseline, 4 and 8 weeks. Concurrent validity was assessed using a receiver operating characteristic (ROC) curve for determining the optimal cut-off points on the Distress Thermometer. Sensitivity to change was assessed by: 1) comparing the mean change in Distress Thermometer scores with scores on the criterion measures at the three time points in patients who improved, deteriorated, or did not change; 2) calculating standardised response means (SRM) and 95% Confidence Intervals.
Results
171/249 patients were recruited at baseline, of whom 111 completed the questionnaires at all three time-points. Our sample was predominantly white, from a managerial, professional or intermediate occupation, with a mean age of 60 years and an equal balance between the genders. As the Distress Thermometer is designed to be used as a screening tool rather than a diagnostic tool, an optimum cut-off point of four was selected to maximise the sensitivity, specificity, positive and negative predictive values against all four of the established criterion measures. Sensitivity to change analysis, using a Distress Thermometer cut-off score of four, showed that the Distress Thermometer monitored change over time in a similar way to the HADS, GHQ-12 and BSI-18. The SRM showed the Distress Thermometer was most responsive to deterioration in GHQ-12. Finally, most patients were not upset in filling in the Distress Thermometer and were happy with its format.
Conclusions
The Distress Thermometer is a valid measure for screening for psychological distress in British cancer patients, in which a cut-off of four offers the best-fit sensitivity and specificity across all measures. It may be useful as a simple tool to monitor change in psychological distress over time.
An article has been submitted for publication in a peer-reviewed journal and is currently under review.
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Project staff
- Kelly Barnes, Louise Jones, Adrian Tookman. Marie Curie Palliative Care Research Unit
- Michael King. Department of Mental Health Sciences, UCL
Start/finish date
June - December 2005
Background
There is a growing recognition that patients and their families should have greater opportunity to discuss their preferences regarding future care. This is particularly relevant with the introduction of the Mental Capacity Act, likely to come into force in 2007. The Act highlights the need for an effective tool that assists health professionals to work with patients to plan end of life care in a relational, patient-centred way and guard against advance care planning becoming a document-driven, decision-focused event.
Aim
To explore the acceptability of an interview schedule, designed to encourage conversations regarding future care; and to explore the suitability of such discussions and inquire about their possible timing, nature and impact.
Method
Palliative care patients, oncology patients, members of oncology user groups and carers were recruited and took part in this qualitative study (22 participants in total). Participants considered the interview schedule and then took part in a focus group to discuss advance planning.
Conclusions
Although some patients welcome the opportunity to discuss end of life care, others may not feel ready or able to do so. A discussion might best be initiated after recurrence of disease. The person initiating discussion should be skilled in responding to the cues of the patient, and should enable the patient to close the topic down at the end of the discussion, in order to avoid dwelling too much on the end of life. Advance care planning should take place over a number of meetings, and be conducted by an appropriately trained professional with sufficient time to talk through the issues raised, and with the knowledge and skills to answer questions, tailor the discussion to the individual, and avoid destroying hope. If patients make an advance decision to refuse certain treatments, they should be given the opportunity to change their minds in the future.
This study has now been published in Palliative Medicine 2007; 21: 23-28 and is available online at http://pmj.sagepub.com/cgi/content/abstract/21/1/23.
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Project staff
• Philip Lodge, Louise Jones, Adrian Tookman. Marie Curie Hospice Hampstead and Royal Free Hampstead NHS Trust
Funder
Centocor Inc (contract with Royal Free Hampstead NHS Trust).
Start/finish date
April 2002-September 2004
Background
Many advanced cancer patients experience fatigue, some with cachexia. There is evidence that Tumour Necrosis Factor alpha (TNF-a) may be a mediator. Infliximab (Remicade) is a chimeric monoclonal antibody to TNF-a licensed for treatment of Crohn's disease and rheumatoid arthritis. We investigated whether Infliximab improved measurable fatigue.
Method
Patients with advanced cancer scoring over the threshold on the Fatigue Severity Scale (FSS) (Stone et al, 1999) were recruited from Marie Curie Hospice, Hampstead (patients with specific risk factors were excluded). Subjects received 5mg/kg Infliximab intravenously, repeated four times weekly if there was clinical improvement. On each occasion measures of fatigue, appetite, body mass, performance, quality-of-life, depression, pain, serum TNF-a and leptin levels were recorded. Serum was analyzed for the presence of TNF-a gene promoter polymorphisms. Treatment with Infliximab was discontinued if any intolerable adverse effects were reported.
Conclusions
A subgroup of patients demonstrated uniform subjective/clinical benefit. We were not able to identify any predictors of this response; a larger, controlled study may reveal more information.
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Project staff
- Shamsul Shah, Adrian Tookman, Louise Jones. Marie Curie Edenhall and Royal Free Hampstead NHS Trust
- Martin Blanchard, Robert Blizard, Michael King. Department of Mental Health Sciences, UCL
Start/finish date
September 2002 - April 2004
Funder
No funder; study formed part of MSc dissertation by Shamsul Shah.
Background
National Service Frameworks increasingly call for increased attention to palliative care in diseases other than cancer. This study explored the palliative care needs and views on prognosis of patients with advanced progressive non-cancer diseases.
Aims
To compare in patients with end-stage cancer and non-cancer diseases:
- The accuracy of patients' and physicians' estimations of prognosis
- Patients' and doctors' perceptions of the seriousness of the illness and needs for supportive care.
Method
A prospective cohort study conducted in one teaching hospital and one cancer hospice in London recruiting 20 patients with advanced non-malignant disease (heart failure, chronic obstructive pulmonary disease and renal failure) and 20 patients with advanced cancer, and their physicians in charge. Our main outcome measures were:
- Patients' and physicians' estimates of health status, care needs and prognosis using new vignette methodology
- Patient survival.
This study has been published in Palliative Medicine 2006; 20: 205-210 and is available online at http://pmj.sagepub.com/cgi/reprint/20/3/205.
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Project staff
- Susie Wilkinson, Sharon Farrelly, Joe Low, Rachael Williams. Marie Curie Palliative Care Research Unit
- Apu Chakraborty. Department of Mental Health Sciences, UCL
- Simon Wilkinson. University of Chicago, USA
Funder
Marie Curie Cancer Care
Start/finish date
May 2003 – April 2004
Background
The popularity of complementary therapies (CT) has grown in Western countries over the last decade as it provides people with potential hope, a sense of control over medical treatment and is perceived as a non-toxic form of treatment. However, little is known about CT use in UK men with prostate cancer.
Aims
To determine prevalence of CT use in men with prostate cancer and to test the hypothesis that CT users have poorer mental health than non-CT users.
Methodology
405 male patients with histological diagnosis of prostate cancer receiving hospital out-patient treatment were invited to complete a postal questionnaire about their cancer management, attitudes to and use of CT, health related quality of life and mental health status. Data was analysed to calculate the prevalence of CT and the attitudes towards its use. Appropriate statistical tests were carried out to identify differences between CT users and CT non-users on variable outcome measures.
Conclusions
Twenty five percent of respondents were using CT. The most frequently used CTs were vitamins, low fat diets, lycopene and green tea. No differences were found in mental health scores between CT users and non-users. Over half of the participants wanted to learn more about CT. Forty three percent of CT users had not informed their doctor about their CT use. Clinicians need to be aware of the prevalence of CT use amongst patients with prostate cancer, considering the potential harm that could be caused by interactions with conventional treatments.
The results of this study have been disseminated as poster presentations for the fourth UICC World Conference for Cancer Organisations, Dublin, Republic of Ireland and the 3rd Research Forum (EAPC), Stresa, Lake Maggiore, Italy, 2004. An article has been submitted to a peer-reviewed journal and is currently under review.
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Project staff
- Joe Low, Michele Cloherty, Susie Wilkinson. Marie Curie Cancer Care
- Stephen Barclay. University of Cambridge
- Arthur Hibble. Eastern Deanery of Postgraduate Medical and Dental Education
Funder
Human Rights Society
Start/finish date
April 2004 – September 2004
Background
In the UK, there is recognition of the central role that General Practitioners (GPs) play in providing care to patients in the last year of their life. There is some concern about GPs' ability to provide this care. To evaluate how these gaps in palliative care knowledge develop, it is important to evaluate the level of training received by GP Registrars (GPRs).
Aims
To evaluate the content of GPR palliative care education by evaluating GPRs' perceptions of the palliative care education in their GP training, their confidence of using their palliative care knowledge, and their competence in their knowledge of cancer-related pain control.
Methodology
A cross-sectional study design was used. Questionnaires were sent to an administrative staff member within each of the six deaneries involved (London, Eastern, Wales, West Midlands, Northern Ireland and North East Scotland). The questionnaires were then sent from the deaneries to all eligible GPRs. Non-responding GPRs were followed up on two further occasions. Data was analysed using descriptive statistics such as frequencies, medians and range.
Conclusions
GPRs have mixed perceptions about their palliative care education. Future educational packages should ensure that GPRs receive planned systematic training in bereavement care and some practical experience in the use of syringe drivers. Both Postgraduate General Practice Education departments and specialist palliative care providers should explore ways of working more closely together to provide GPRs with more expertise in palliative care.
The results of this study have been disseminated as an oral presentation for the 9th European Association of Palliative Care Congress in Aachen, Germany (2005). The study has now been published in Palliative Medicine 2006; 20: 1-7, and is available online at http://pmj.sagepub.com/cgi/reprint/20/4/463.
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Project staff
- Clare Miles, Margaret Goodman, Susie Wilkinson. Marie Curie Cancer Care
Background
Palliative care has been dominated by a need to achieve effective pain control; unfortunately, many of the drugs used to achieve this, such as opioids, lead to constipation as an adverse effect. There is uncertainty about the 'best' management of constipation in patients with cancer as well as there being variation in practice between palliative care settings.
Objectives
To determine the effectiveness of laxative administration for the management of constipation in palliative care patients, and the differential efficacy of the laxatives used to manage constipation.
Search strategy
Biomedical databases were searched including: Medline, Embase, Cancerlit, PubMed, Science Citation Index, CINAHL, The Cochrane Library, SIGLE, NTIS, DHSS-Data, Dissertation Abstracts, Conference Proceedings from both International and National Conferences, Index to Scientific and Technical Proceedings and National Health Service National Research Register. Reference lists of relevant articles were searched.
Selection criteria
Randomised controlled trials.
Data collection and analysis
Two reviewers independently assessed trial quality and extracted patient-reported data measuring changes in stool frequency and ease of passing stools, using objective and validated scales. Tolerance or adverse effects of laxative used were also sought.
Main results
Three randomised controlled trials met the inclusion criteria for this review. Between these trials, the laxatives lactulose, senna, co-danthramer and Misrakasneham were evaluated. All four trials included number and frequency of bowel movements and relative ease of defecation as part of the assessment of laxative efficacy. All of the laxatives demonstrated a limited level of efficacy, although a significant number of patients required rescue laxatives in each of the studies. Other related systematic reviews have similarly identified that there is a lack of evidence to support the use of one laxative, or combination of laxatives, over another.
Reviewers' conclusions
The treatment of constipation in palliative care is based on inadequate experimental evidence. Recommendations for laxative use can be related to costs as much as to efficacy. There have been so few comparative studies. Equally there have been few direct comparisons between different classes of laxative and between different combinations of laxatives. There persists an uncertainty about the 'best' management of constipation in this group of patients.
This systematic review has now been published by the Cochrane Library, available at: http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003448/frame.html.
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