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Biomedical subjects

J Addington-Hall

Publications and source records attributed to J Addington-Hall.

At least 19 recordsLinked to original sources

The effect of noninvasive ventilation on ALS patients and their caregivers.

BACKGROUND: Noninvasive ventilation (NIV) reduces mortality and improves some aspects of quality of life (QoL) in ALS. However, concerns remain that progressive disability may negate these benefits and unnecessarily burden caregivers. METHODS: Thirty-nine patients requiring NIV were offered treatment. Twenty-six were established on NIV, but 13 declined or could not tolerate NIV. Fifteen patients without respiratory muscle weakness (RMW) but with similar ALS severity and age were studied in parallel. Caregivers of 21 NIV, 7 untreated, and 10 patients without RMW participated. Patients and caregivers had detailed QoL measurements for 12 months. NIV patients underwent cognitive testing before and after treatment. RESULTS: RMW correlated with lower QoL. The median survival of untreated patients (18 days; 95% CI 11 to 25 days) was shorter than for NIV patients (298 days; 95% CI 192 to 404 days) and non-RMW patients (370 days; 95% CI 278 to 462 days; log rank test [2 df] = 81, p = 0.00001). A wide range of QoL measures improved within 1 month of starting NIV, and improvements were maintained for 12 months. QoL of non-RMW patients declined as RMW progressed. Caregivers of NIV and non-RMW patients showed similar increases in burden, but NIV patient caregivers developed a deterioration in the Short Form-36 Vitality score. No improvements were found on measures of learning and recall in the NIV patients. CONCLUSIONS: Respiratory muscle weakness has a greater impact on quality of life (QoL) than overall ALS severity. Noninvasive ventilation (NIV) improves QoL despite ALS progression. NIV has no impact on most aspects of caregiver QoL and does not significantly increase caregiver burden or stress.

Adult↗

Older patients' experiences of treatment for colorectal cancer: an analysis of functional status and service use.

Age and ageing are an important part of the context within which the care and treatment of people with cancer is provided. More information is needed about the effects of cancer treatment on the lives of older people following inpatient care. We conducted a 3-year study in which older people with colorectal cancer completed a detailed questionnaire on multidimensional function and service use before and after elective treatment. Here we present an analysis of changes in functional status and service use over the pre- to post-treatment period, and set out a detailed picture of older people's experiences before and after treatment. In total, 337 patients with colorectal adenocarcinoma aged 58-95 years were interviewed before treatment using the OARS Multidimensional Functional Assessment Questionnaire (OMFAQ), Rotterdam Symptom Checklist (RSCL) and a severity of morbidity score. Study end points were defined as post-treatment functional status, symptom distress, severity of morbidity and frequency of service use. Pre- and post-treatment data were compared using matched analyses. Logistic regression was used to assess associations between age and the main outcome measures, and frequency of service use after treatment was compared between age groups using the chi2 test. Overall, patients experienced both positive and negative outcomes following treatment. It was notable that patients aged > or = 75 years showed improvement in only one of the principal outcome measures. Patterns of service use following treatment suggest that support at home is a key issue for patients. With the exception of nursing care, however, help at home is provided on a majority of occasions by families themselves. This raises important questions about how much preparation patients and families receive or would like before they leave hospital after treatment for cancer. A collaborative, family-centred approach to meeting people's needs is called for in the months following inpatient care.

Adenocarcinoma↗

Treatment decisions in older patients with colorectal cancer: the role of age and multidimensional function.

The aim of the study was to investigate the role of age and multidimensional functional status in treatment decisions in older patients with colorectal cancer. Three hundred and thirty-seven patients aged 58-95 years with adenocarcinoma of the colon or rectum were interviewed before and after treatment using the OARS Multidimensional Functional Assessment Questionnaire (OMFAQ), a self-reported severity of morbidity scale, and the Rotterdam Symptom Checklist (RSCL). The OMFAQ rates five dimensions of function: social resources, economic resources, mental and physical health and self-care capacity. The likelihood of patients with Duke's C colorectal cancer receiving adjuvant chemotherapy decreased significantly with age (P = 0.001, trend). Differences in treatment received were not explained by differences in morbidity, economic, mental or physical function, self-care capacity, or any of the RSCL measures. After controlling for age, Duke's C patients who received adjuvant chemotherapy were less impaired in social resources than Duke's C patients who did not (P = 0.06). No other significant pre-treatment differences in functional status were found. Differences in age and social resources exist between patients who do and do not receive adjuvant chemotherapy. Care should be taken to ensure that patients are not excluded from treatment with known survival benefits because of their age, and the question of providing appropriate social support during adjuvant chemotherapy should be re-examined.

Adenocarcinoma↗

Research sensitivities to palliative care patients.

This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a 'palliative care patient' are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients' and families' experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users' views.

Data Collection↗

Depression in advanced disease: a systematic review Part 1. Prevalence and case finding.

OBJECTIVE: To identify all literature regarding depression in patients with advanced cancer and among mixed hospice populations, and to summarise the prevalence of depression according to different definitions. METHODS: A systematic review was performed using extensive electronic and hand searches. All studies with quantitative data on prevalence of depression were included and categorised according to their definition of depression. RESULTS: We identified 46 eligible studies giving information on the prevalence of depression, and a further four which gave information on case finding. The most widely used assessment of depression was the Hospital Anxiety and Depression Scale (HADS), which gave a median prevalence of 'definite depression' (i.e., a score on the depression subscale of > 10) of 29%, (interquartile range, IQR, 19.50-34.25%). Studies that used psychiatric interviews indicated a prevalence of major depressive disorder ranging from 5% to 26%, with a median of 15%. Studies were generally small (median sample size 88.5, IQR 50-108), had high numbers of nonresponders, and rarely gave confidence intervals for estimates of prevalence. CONCLUSIONS: Depression is a common problem in palliative care settings. The quality of much of the available research is poor, based on small samples of patients with very high nonparticipation rates. The clinical importance of depression is described in subsequent papers.

Anxiety Disorders↗

Cancer services. Left to chance.

Most primary care groups/trusts have cancer lead posts and have some involvement in planning and commissioning cancer services. Cancer is not a high priority in comparison to other national service frameworks and the transition to PCT status. PCG/Ts want help and information about developing cancer services but not all want this now. Most PCG/Ts have some involvement in cancer networks but information needs exist about their role and potential.

Hospitals, Public↗

Quality of life assessment and outcome of palliative care.

Quality of life (QoL) assessment is crucial for the evaluation of palliative care outcome. In this paper, our methodological approach was based on the creation of summary measures. Fifty-eight Palliative Care Units (PCUs) in Italy participated in the study. Each PCU randomly selected patients to be 'evaluated' among the consecutively 'registered' patients. At baseline (first visit) and each week the patient was asked to fill in a QoL questionnaire, the Therapy Impact Questionnaire (TIQ). Short-survivors (<7 days) were not included in the QoL study. The random sample of patients (n = 601) was highly representative of the general patient population cared for by the PCUs in Italy. The median survival was 37.9 days. We collected 3546 TIQ, 71.4 % completed by the patients. A Summary Measure Outcome score was calculated for 409 patients (81% of the patients included in the QoL study). The results of this national study showed that cooperative clinical research in palliative care is possible and QoL measures can be used to assess the outcome.

Aged↗

After-death interviews with surrogates/bereaved family members: some issues of validity.

After-death interviews with bereaved respondents are an important tool in the repertoire of researchers evaluating the quality of end-of-life care or investigating the experiences of people at the end of life. Despite the importance of after-death interviews to our understanding of the last months of life, the validity of the information gathered has received little attention. In this article, we review some of the available information, drawing on evidence from cognitive psychology as well as from palliative care studies. Findings from cognitive psychology indicate that memory is a dynamic process, influenced by emotion state and the individual's perspective at the time of the event and at recall. Further research is therefore needed to understand better the circumstances, types of information and research questions for which bereaved relatives are valid surrogates for people who have died.

Bereavement↗

A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer.

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.

Aged↗

Educational opportunities in palliative care: what do general practitioners want?

It is important to support general practitioners (GPs) in maintaining and developing their palliative care skills as most of the final year of a patient's life is spent at home under the care of the primary health care team. The training needs and uptake of GPs have been explored, but little is known about how GP educational preferences vary. The aim of this study was to explore the current educational preferences of GPs in different geographical locations as part of an evaluation of an educational intervention. The methods used included postal questionnaires sent to 1061 GPs. Results from 640 (60%) of GPs revealed that half (51%) wanted education in symptom control for non-cancer patients. More inner-city GPs wanted education in opiate prescribing (43%), controlling nausea and vomiting (45%), and using a syringe driver (38%) than their urban and rural colleagues (26%, 29% and 21%, respectively). Increased educational preference and increased difficulty in accessing information was associated with reduced confidence in symptom control. To maximize educational uptake it will be important for educational strategies to be developed and targeted according to variations in demand, and in particular to respond to the need for palliative care education in symptom control for patients suffering from advanced non-malignant disease.

Adult↗

Randomised controlled trial of non-directive counselling, cognitive-behaviour therapy, and usual general practitioner care for patients with depression. I: clinical effectiveness.

OBJECTIVE: To compare the clinical effectiveness of general practitioner care and two general practice based psychological therapies for depressed patients. DESIGN: Prospective, controlled trial with randomised and patient preference allocation arms. SETTING: General practices in London and greater Manchester. PARTICIPANTS: 464 of 627 patients presenting with depression or mixed anxiety and depression were suitable for inclusion. INTERVENTIONS: Usual general practitioner care or up to 12 sessions of non-directive counselling or cognitive-behaviour therapy provided by therapists. MAIN OUTCOME MEASURES: Beck depression inventory scores, other psychiatric symptoms, social functioning, and satisfaction with treatment measured at baseline and at 4 and 12 months. RESULTS: 197 patients were randomly assigned to treatment, 137 chose their treatment, and 130 were randomised only between the two psychological therapies. All groups improved significantly over time. At four months, patients randomised to non-directive counselling or cognitive-behaviour therapy improved more in terms of the Beck depression inventory (mean (SD) scores 12.9 (9.3) and 14.3 (10.8) respectively) than those randomised to usual general practitioner care (18.3 (12.4)). However, there was no significant difference between the two therapies. There were no significant differences between the three treatment groups at 12 months (Beck depression scores 11.8 (9.6), 11.4 (10.8), and 12.1 (10.3) for non-directive counselling, cognitive-behaviour therapy, and general practitioner care). CONCLUSIONS: Psychological therapy was a more effective treatment for depression than usual general practitioner care in the short term, but after one year there was no difference in outcome.

Adult↗

'All the services were excellent. It is when the human element comes in that things go wrong': dissatisfaction with hospital care in the last year of life.

Patient satisfaction surveys are seen as an important way of obtaining 'user views' of health service provision. However, there is a growing body of research and theoretical literature that questions the validity of the concept of 'patient satisfaction' and hence the use of this type of survey. A postbereavement survey of people who registered a random sample of cancer deaths in an inner London health authority was undertaken in 1996/7. The survey questionnaire (VOICES) included 14 open-ended questions which asked respondents to add any comments they felt were relevant about the care of the deceased. This paper uses these data to examine the causes of dissatisfaction with hospital-based care. Of the 229 informants responding to the questionnaire, 138 included some written comment about care in hospital. At least one negative comment was made by 59% (82) of those making any comment. Of these, 55% (44) rated the care given by doctors as 'excellent' or 'good' and 63% (50) rated that given by nurses as 'excellent' or 'good'. Qualitative analysis of responses to open questions suggest that expressions of dissatisfaction arise from a sense of being 'devalued', 'dehumanized' or 'disempowered' and from situations in which the 'rules' governing the expected health professional-patient relationships were broken. As such, the causes of dissatisfaction for this particular group of patients are similar to the causes of dissatisfaction with health care in general reported elsewhere. The palliative care approach emphasizes patient- and family-centred care and aims to promote physical and psychosocial well-being. The study findings suggest that adoption of the palliative care approach could reduce the experience of dissatisfaction for many service users, not only those whose deaths are anticipated.

Dehumanization↗

Providing palliative care in primary care: how satisfied are GPs and district nurses with current out-of-hours arrangements?

The complex needs of palliative care patients require an informed, expert, and swift response from out-of-hours general medical services, particularly if hospital admission is to be avoided. Few general practitioners (GPs) reported routinely handing over information on their palliative care patients, particularly to GP co-operatives. District nurses and inner-city GPs were least satisfied with aspects of out-of-hours care. Most responders wanted 24-hour availability of specialist palliative care. This indicates a need to develop and evaluate out-of-hours palliative care procedures and protocols, particularly for GP co-operatives, and to improve inter-agency collaboration.

Adult↗

Which terminally ill cancer patients in the United Kingdom receive care from community specialist palliative care nurses?

This study investigates how cancer patients who receive care from community specialist palliative care (CSPC) nurses differ from those who do not. This was achieved by secondary data analyses from the Regional Study of Care for the Dying, a retrospective interview survey of deaths in 1990 in 20 nationally representative health districts. Interviews were obtained for 2,074/2,915 (71%) of randomly selected cancer deaths; 574 (27.8%) were reported to have received care from a Macmillan nurse, hospice home-care nurse, or other community specialist palliative care nurse. Using logistic regression analysis 10 factors were found to predict independently CSPC use. Being dependent with dressing/undressing, needing help at night, having constipation, experiencing vomiting/nausea, being mentally confused, having breast cancer and being under the age of 75 years increased the likelihood of receiving CSPC. Having a lymphoma, leukaemia or myeloma, a brain tumour and being dependent on others for help with self-care for more than 1 year decreased the likelihood. The use of CSPC nurses to provide expertise in symptom control and to support families of dependent patients is consistent with the aims of palliative care, and therefore appears appropriate. Further research is, however, needed to investigate the apparent age bias in access to these services, and to ensure that CSPC services are provided on the basis of need, irrespective of patient age.

Activities of Daily Living↗