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Biomedical subjects

Julia Addington-Hall

Publications and source records attributed to Julia Addington-Hall.

At least 19 recordsLinked to original sources
PubMed2007

The prevalence of symptoms in end-stage renal disease: a systematic review.

Symptoms in end-stage renal disease (ESRD) are underrecognized. Prevalence studies have focused on single symptoms rather than on the whole range of symptoms experienced. This systematic review aimed to describe prevalence of all symptoms, to better understand total symptom burden. Extensive database, "gray literature," and hand searches were undertaken, by predefined protocol, for studies reporting symptom prevalence in ESRD populations on dialysis, discontinuing dialysis, or without dialysis. Prevalence data were extracted, study quality assessed by use of established criteria, and studies contrasted/combined to show weighted mean prevalence and range. Fifty-nine studies in dialysis patients, one in patients discontinuing dialysis, and none in patients without dialysis met the inclusion criteria. For the following symptoms, weighted mean prevalence (and range) were fatigue/tiredness 71% (12% to 97%), pruritus 55% (10% to 77%), constipation 53% (8% to 57%), anorexia 49% (25% to 61%), pain 47% (8% to 82%), sleep disturbance 44% (20% to 83%), anxiety 38% (12% to 52%), dyspnea 35% (11% to 55%), nausea 33% (15% to 48%), restless legs 30% (8%to 52%), and depression 27% (5%to 58%). Prevalence variations related to differences in symptom definition, period of prevalence, and level of severity reported. ESRD patients on dialysis experience multiple symptoms, with pain, fatigue, pruritus, and constipation in more than 1 in 2 patients. In patients discontinuing dialysis, evidence is more limited, but it suggests they too have significant symptom burden. No evidence is available on symptom prevalence in ESRD patients managed conservatively (without dialysis). The need for greater recognition of and research into symptom prevalence and causes, and interventions to alleviate them, is urgent.

Adult↗
PubMed2006

Roles, service knowledge and priorities in the provision of palliative care: a postal survey of London GPs.

OBJECTIVES: To explore general practitioners' (GPs) current involvement in and attitudes towards the provision of palliative care in primary care. METHODS: Postal survey of 356 London-based GPs, assessing attitudes towards palliative care provision, district nursing and specialist palliative care services, and priorities for future service development. RESULTS: Currently, 65% of GPs were providing palliative care to patients on their list; 72% agreed or strongly agreed palliative care was a central part of their role; and 27% wanted to hand care over to specialists. Most GPs (66%) disagreed with the statement that 'palliative care is mainly district nursing (DN) work'. Many were unaware of out-of-hours DN and specialist palliative care services. Multi-variable analysis found four GP characteristics--larger practice size, more years experience as a GP, receipt of palliative care education, and current provision of palliative care--were associated with agreement that palliative care was central to a GP's role. CONCLUSION: A minority of NHS GPs in London would rather have no involvement in palliative care in primary care. Knowledge of current services for palliative care is generally poor among GPs. These findings highlight potential gaps in services, particularly in small practices. Specialists will need to consider these factors in working with GPs to develop primary palliative care and to enable greater access to specialist palliative care.

Community Health Nursing↗
PubMed2005

What is important to measure in the last months and weeks of life?: A modified nominal group study.

BACKGROUND: Identifying the most important issues for palliative care patients and their families, and assessing whether services address these appropriately is important. Little is known about the views of United Kingdom service users and whether, and in what ways, they differ from those in the published literature from other countries, or from health professionals. AIMS: To investigate what is important to measure at the end of life from the perspectives of United Kingdom patients, bereaved relatives and health care professionals. METHODS: Ten focus groups, using a modified nominal group technique, with a total of 75 participants (10 patients, 35 professionals and 30 bereaved relatives) enabled issues participants thought important to measure at the end of life to be identified and prioritised using ratings and rankings. Thematic analysis of the data was conducted to enable cross-group comparison. FINDINGS: Seven themes were identified as most important to participants: symptom management; choice and control; dignity; quality of life; preparation; relationships; and co-ordination and continuity. Bereaved relatives and professionals emphasised symptom management, relationships and quality of life, whilst patients prioritised issues around preparation. CONCLUSIONS: The study was successful in identifying aspects of end of life care that are important to patients, families and health professionals in the United Kingdom. Although participants were not representative of the wider population in the United Kingdom, the degree of concordance with published studies from outside the United Kingdom increases the credibility of the findings. Quality assurance initiatives need to ensure that they act on information such as this on users' priorities. Further research is needed to test out the findings in other settings in the United Kingdom, to build on the findings about different participants' views and to identify similarities and variations between countries.

Activities of Daily Living↗
PubMed2005

The development of a questionnaire to assess the attitudes of older people to end-of-life issues (AEOLI).

OBJECTIVES: To develop an end-of-life attitudes questionnaire for use in a large community-based sample of older people. DESIGN: Nominal groups and standardization of questions. PARTICIPANTS: Eighteen older people, ten academics and five specialist palliative care health professionals were involved in nominal groups. Thirty older people took part in initial pilot work and a further 50 were involved in reliability testing. RESULTS: A 27-item attitudes of older people to end-of-life issues (AEOLI) questionnaire. DISCUSSION: In modern times, death and dying predominantly occurs among older people and yet we know very little about older people's attitudes to end-of-life care. The AEOLI questionnaire can be used in large scale surveys to elicit attitudes on end-of life issues considered important by older people and health care professionals.

Aged↗
PubMed2005

Older adults' attitudes to death, palliative treatment and hospice care.

BACKGROUND: Cancer patients who receive care from specialist palliative care services in the UK are younger than those who do not receive this care. This may be explained by age-related differences in attitudes to end-of-life care. OBJECTIVE: To determine the relationship between age and i) attitudes to death and preparation for death; and ii) knowledge about, and attitudes to, cancer and palliative care. DESIGN: Interviews with older people, using a novel questionnaire developed using nominal groups. Main comparisons were made between people aged 55-74 with those aged 75 years and over. SETTING: General practices in London. SUBJECTS: 129 people aged 55-74 and 127 people aged 75 years or over on the lists of general practitioners. METHODS: A cross-sectional survey to determine knowledge and experience of hospice care; preparation for end-of-life; and attitudes to end-of-life issues. RESULTS: Participants were knowledgeable about specialist palliative care and almost half had some indirect contact with a hospice. People aged >74 were less likely than younger participants to want their doctor to end their life in a terminal illness. Although they believed death was easier to face for older people, they did not believe that younger people deserved more consideration than older people when dying, or that they should have priority for hospice care. Education, social class, hospice knowledge and anxiety about death had little influence on overall attitudes. CONCLUSIONS: The relative under-utilization of hospice and specialist palliative care services by older people with cancer in the UK cannot be explained by their attitudes to end-of-life issues and palliative care.

Age Factors↗
PubMed2005

The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life.

Chronic obstructive pulmonary disease (COPD) causes almost as many deaths as lung cancer, yet evidence about the impact of COPD in the latter stages of illness is limited. We assessed the healthcare needs of COPD patients in the last year of life through a retrospective survey of the informants of 399 deaths from COPD in four London health authorities between January and May 2001. We assessed symptoms, day to day functioning, contact with health and social services, formal and informal help with personal care, information received and place of death. We obtained data on 209 (52%) deceased subjects (55% male), average age at death was 76.8 years. Based on the reports of informants of the deaths: 98% were breathless all the time or sometimes in the last year of life; other symptoms reported all the time or sometimes included fatigue or weakness (96%), low mood (77%) and pain (70%); breathlessness was partly relieved in over 50% of those treated; control of other symptoms was poor, with low mood relieved in 8% and no treatment for low mood received by 82% of sufferers; 41% left the house less than once a month or never; 47% were admitted to hospital at least twice in the last year of life; 51% received regular check-ups for their chest; 36% had check-ups by a hospital consultant; 35% saw their general practitioner (GP) less than once every three months or never; 63% knew they might die; 67% died in hospital. Patients who died from COPD lacked surveillance and received inadequate services from primary and secondary care in the year before they died. The absence of palliative care services highlights the need for research into appropriate models of care to address uncontrolled symptoms, information provision and end of life planning

Adult↗
PubMed2005

Palliative care services in England: a survey of district nurses' views.

Good access to health and social services is essential to enable palliative care patients to remain and die at home. This article reports on a survey of perceptions of availability of such services by district nursing teams (651 respondents) across eight cancer networks in England. Only just over half of respondents thought GP home visits and specialist palliative care assessment were always available. Many district nurses reported, at best, only sometimes being able to access inpatient palliative care beds, respite care, Marie Curie/night sitting services or social work assessment. Wide variation in access to all services was reported between cancer networks. Equitable provision of services is essential if more patients are to be cared for and die at home, but our results indicate considerable room for improvement. Primary care trusts, cancer networks and strategic health authorities must work together to ensure minimum standards of access nationally if the recommendations of the NICE guidance on supportive and palliative care are to be achieved.

After-Hours Care↗
PubMed2005

Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES.

AIM: To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London. STUDY DESIGN: Group discussions with informal carers (n=3 groups) and professionals (n = l1 group). SAMPLE AND SETTING: Informal carers within a Bengali-speaking community (n = 26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n = 6). ANALYSIS: Data subject to content analysis. RESULTS: Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying. CONCLUSIONS: These findings, together with participants' views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.

Adult↗
PubMed2004

The last year of life of COPD: a qualitative study of symptoms and services.

INTRODUCTION: To assess the symptoms experienced and their impact on patients' lives in the last year of life of COPD, and to assess patients' access to and contact with health services. METHOD: Qualitative analysis using the framework approach of in-depth interviews with 25 carers of COPD patients who had died in the preceding 3-10 months. RESULTS: The average age of death was 77.4 years. The majority of patients died in hospital. The major symptom reported by the carers was breathlessness which impaired the deceased's mobility and contributed to their being housebound. Anxiety and panic were also associated with breathlessness. Depression was reported. Oxygen, though beneficial, was seen to impose lifestyle restrictions due to increasing dependence on it. Some patients only health care contact was through repeat prescriptions from their GP whereas three had regular follow up by a respiratory nurse specialist who linked community and secondary care. Overall, follow-up, systematic review or structured care were uncommon. DISCUSSION: Breathlessness causes major disability to patients with COPD in the last year of life. The expertise of palliative care in treating breathlessness may be valuable in these patients many of whom lacked regular health service contact in the year before death. Patients who are housebound with high levels of morbidity require community health services. Respiratory nurse specialists were rarely involved in the patients' care and may provide a link between the GP, the chest physician and the palliative care team.

Aged↗
PubMed2004

What is the potential for the use of clinical outcome measures to be computerised? Findings from a qualitative research study.

Clinical outcome measures are used in clinical audit to monitor the quality of care provided to patients. As information technology (IT) is increasingly being integrated into the delivery of health care, computerising the use of clinical outcome measures has been proposed. However, little is known about the attitudes of health professionals towards this. Aims to understand professionals' views on adapting one clinical outcome measure--the palliative care outcome scale (POS)--for use on hand-held computers. Concludes that these results reinforce existing research on clinical outcome measures and IT in health care; identify special palliative care issues when considering the use of computerised clinical outcome measures with patients; and highlight the need for further research.

Attitude of Health Personnel↗
PubMed2003

Using satisfaction to measure the quality of palliative care: a review of the literature.

BACKGROUND: The advent of clinical governance in British health policy has placed increased demands on health care providers and practitioners to ascertain the quality of their services. Traditional indicators of quality of health care, such as death or recovery rates, are not appropriate in palliative care. Thus, it is important to establish alternative approaches to measuring the quality of palliative care services and interventions. AIMS: Satisfaction levels have been used widely in palliative care to assess quality. A literature review was conducted which aimed to explore the strengths and weaknesses of using satisfaction as an indicator of the quality of palliative care services. It also aimed to provide a solid basis upon which further work could be built. METHODS: Five electronic databases were searched using key words and phrases and key authors. Hand searches were conducted of four journals that contributed significantly to the concept of satisfaction, and reference lists of reviewed papers were scrutinized. Relevant papers were reviewed, data were extracted and these data were thematically analysed. FINDINGS: There are a number of important unresolved issues in the literature with regard to using satisfaction as an indicator of the quality of palliative care services. First, few alternatives to satisfaction are available. Secondly, satisfaction is under-theorized and no widely accepted definition exists. Thirdly, there are methodological inconsistencies across studies. It is important to take into account these findings when planning and implementing change following service evaluation using satisfaction as a measure. CONCLUSIONS: Relying on findings of satisfaction surveys to determine clinical and policy amendments in palliative care may not result in improvements in overall quality of care. Using satisfaction as a method of assessing the quality of health care services is particularly problematic and requires further investigation in both practical and conceptual terms.

Humans↗
PubMed2003

Building bridges in palliative care: evaluating a GP Facilitator programme.

The objective of this study was to evaluate the impact of the Macmillan GP Facilitator Programme in Palliative Care on the knowledge, attitudes and confidence in symptom control of general practitioners (GPs), communication with patients and out-of-hours practice. GP Facilitators work on average for two sessions a week with practices in their locality. The design included a before and after study, with geographical controls matched on type of area (inner city, urban and rural) and broadly on Jarman scores using postal questionnaires sent to GPs. Scores measured change in GP awareness, attitudes and practice over two years of the intervention, derived from Likert scale responses to the postal questionnaires. Although overall few significant results were found, we did identify an increase in the use of palliative care guidelines in Facilitator districts, together with an increase in awareness of day care. The programme was associated with increased positive attitudes towards specialist palliative care services and results suggested increased satisfaction with out-of-hours services for patients. No change was found for confidence in symptom control and communication over diagnosis with cancer patients was less than in control districts. The design also incorporated a qualitative component, and from this we found the Facilitator programme to be popular with local GPs who valued the support of a colleague who knew the demands and constraints of general practice. In conclusion, we have demonstrated an impact of the GP Facilitator programme on GP awareness of, use and increased positive attitudes towards specialist palliative care services. By improving communication between primary and specialist palliative care, the programme should contribute substantially to improved care of the dying at home.

Attitude of Health Personnel↗