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Biomedical subjects

I J Higginson

Publications and source records attributed to I J Higginson.

At least 19 recordsLinked to original sources
PubMed2006

Measurement of breathlessness in advanced disease: a systematic review.

BACKGROUND: There is a plethora of assessment tools available to measure breathlessness, the most common and disabling symptom of advanced cardio-respiratory disease. The aim of this systematic review was to identify all measures available via standard search techniques and review their usefulness for patients with advanced disease. METHODS: A systematic literature search was performed in Medline. All studies focusing on the development or evaluation of tools for measuring breathlessness in chronic respiratory disease, cardiac disease, cancer, or MND were identified. Their characteristics with regard to validity, reliability, appropriateness and responsiveness to change were described. The tools were then examined for their usefulness in measuring significant aspects of breathlessness in advanced disease. RESULTS: Thirty-five tools were initially identified, two were excluded. Twenty-nine were multidimensional of which 11 were breathlessness-specific and 18 disease-specific. Four tools were unidimensional, measuring the severity of breathlessness. The majority of disease-specific scales were validated for chronic obstructive pulmonary disease (COPD), few were applicable in other conditions. No one tool assessed all the dimensions of this complex symptom, which affects the psychology and social functioning of the affected individual and their family--most focused on physical activity. CONCLUSION: As yet there is no one scale that can accurately reflect the far-reaching effects of breathlessness on the patient with advanced disease and their family. Therefore, at present, we would recommend combining a unidimensional scale (e.g. VAS) with a disease-specific scale (where available) or a multidimensional scale in conjunction with other methods (such as qualitative techniques) to gauge psychosocial and carer distress for the assessment of breathlessness in advanced disease.

Dyspnea↗
PubMed2006

Psychological services in hospices in the UK and Republic of Ireland.

OBJECTIVE: To evaluate the level of psychological services available to patients and staff in hospices. DESIGN: Questionnaire analysis. SETTING: Hospices in the UK and Republic of Ireland. PARTICIPANTS: 224 hospices. MAIN OUTCOME MEASURES: The availability of professional psychological support for those with advanced disease. RESULTS: Responses were received from 166 hospices (74%). Only 50 hospices (30%) have access to a psychiatrist, whilst 68 (41%) have access to a clinical psychologist and 92 (45%) have neither. Only 21 hospices (12%) have service level agreements with local mental health trusts. Counsellors, complementary therapists and spiritual advisors such as chaplains were more plentiful. CONCLUSIONS: Delivery of the NICE guidelines, especially tier four, may be compromised by limited availability of specialist services. This has implications for the psychological assessment of applicants for voluntary euthanasia under an Assisted Dying Act.

Counseling↗
PubMed2005

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence.

BACKGROUND: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. METHODS: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. RESULTS: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. CONCLUSIONS: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.

Antiretroviral Therapy, Highly Active↗
PubMed2004

Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review.

Although there is increasing interest in measuring the quality of life (QoL) of people with multiple sclerosis (MS), relatively little is known about the issues of importance to people severely affected by MS. In the first of two systematic reviews, we searched the literature to identify measures that have been used to assess health-related QoL in people with MS, and described their measurement properties in terms of validity, reliability, responsiveness to change, and appropriateness for QoL assessment in people severely affected by MS. In the second review, we identified care domains important to people with MS, by reviewing survey, focus group and interview studies involving people with MS and/or their caregivers. Forty-six studies evaluating 12 disease-specific and ten generic QoL measures for patients, and one disease-specific measure for caregivers, satisfied all inclusion criteria. Sixteen focus group or interview studies and 51 questionnaire-based studies evaluated domains of care important to people with MS, and seven qualitative and 11 questionnaire-based studies assessed domains of care important to their caregivers. From these studies, we identified 15 domains of care important to people with MS and 12 domains important to caregivers. QoL measures differed markedly in their coverage of these care domains. Moreover, each measure fulfilled some but not all criteria of validity, reliability, responsiveness, and appropriateness. Further work is needed to clarify the domains of care relevant to people with severe MS, and to measure health-related QoL in this population.

Humans↗
PubMed2003

What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness.

Informal carers in cancer and palliative care are known to have high needs and psychological morbidity, yet a literature review identified few targeted interventions. This systematic review of interventions for carers of patients using home cancer and palliative care services searched Medline, CancerLit, Psycinfo and Cinahl databases. The terms used were carer(s), caregiver(s), palliative and cancer. Papers that reported interventions for adults actively providing informal care for noninstitutionalized cancer and palliative care patients were reviewed. Twenty-two interventions were identified, comprising home nursing care (four), respite services (three), social networks and activity enhancement (two), problem solving and education (three) and group work (10). Of these, nine were delivered solely to carers (i.e., were targeted services). Only six of the carers' interventions had been evaluated, two of these had used a randomized control trial (RCT; grades IB), three employed a single group methodology (two prospective grades IIIC and one retrospective grade IIIC) and one was evaluated using facilitator feedback. There was a lack of outcome evaluation designs, small sample sizes and a reliance on intervention descriptions and formative evaluations. Methodological challenges may mean alternatives to 'pure' RCTs should be considered. The current evidence contributes more to understanding feasibility and acceptability than to effectiveness. Practitioners and evaluators must prioritize the further development of intervention studies.

Adult↗
PubMed2003

Palliative day care: what does it cost to run a centre and does attendance affect use of other services?

AIM: To describe the cost of palliative day care (PDC), assessing the value of all resources whether paid for or not. To examine different patterns of resource use resulting from attending PDC. METHODS: Five PDC centres in southern England provided detailed cost and resource use data, both paid and unpaid for. The PDC group were consecutive new referrals to a PDC centre who were well enough to be interviewed. The comparison group were recruited from home care teams. Data were collected at baseline, six to eight weeks and 12-15 weeks, on health and social care utilization in the month prior to interview. Data were divided into cohorts based on time from first interview to death and analysed separately. MAIN OUTCOMES: Annual cost of running a day care centre, and cost per patient per day. Use of all health and social care resources over time, stratified by time from death. Comparison of health and social care by stage of illness, and by PDC attendance. RESULTS: PDC cost around pound 54 per person per day in 1999, rising to pound 75 including unpaid resources. 145 patients had data on health and social care use. The patterns of care showed that, overall, patients accessed few services other than PDC. Comparison group patients did not access similar services elsewhere. PDC might substitute home nursing and GP care for patients who attend PDC at least three months before death but this data is not conclusive. Inpatient care was negligible for both groups. CONCLUSIONS: A full economic evaluation could not be undertaken without robust evidence of the effectiveness of PDC. PDC centres made use of resources that were not paid for and shared resources with inpatient units, reducing costs. Service use was different for patients who attended compared with patients who did not. Similar services were not accessed elsewhere in the community; PDC does not appear to replicate other services for this group of patients.

Cost-Benefit Analysis↗
PubMed2002

Efficacy of acupuncture in asthma: systematic review and meta-analysis of published data from 11 randomised controlled trials.

Contradictory results from randomised controlled trials of acupuncture in asthma suggest both a beneficial and detrimental effect. The authors conducted a formal systematic review and meta-analysis of all randomised clinical trials in the published literature that have compared acupuncture at real and placebo points in asthma patients. The authors searched for trials published in the period 1970-2000. Trials had to measure at least one of the following objective outcomes: peak expiratory flow rate, forced expiratory volume in one second (FEV1) and forced vital capacity. Estimates of the standarised mean difference, between acupuncture and placebo were computed for each trial and combined to estimate the overall effect. Hetereogeneity was investigated in terms of the characteristics of the individual studies. Twelve trials met the inclusion criteria but data from one could not be obtained. Individual patient data were available in only three. Standardised differences between means ranging from 0.071 to 0.133, in favour of acupuncture, were obtained. The overall effect was not conventionally significant and it corresponds to an approximate difference in FEV1 means of 1.7. After exploring hetereogenenity, it was found that studies where bronchoconstriction was induced during the experiment showed a conventionally significant effect. This meta-analysis did not find evidence of an effect of acupuncture in reducing asthma. However, the meta-analysis was limited by shortcomings of the individual trials, in terms of sample size, missing information, adjustment of baseline characteristics and a possible bias against acupuncture introduced by the use of placebo points that may not be completely inactive. There was a suggestion of preferential publication of trials in favour of acupuncture. There is an obvious need to conduct a full-scale randomised clinical trial addressing these limitations and the prognostic value of the aetiology of the disease.

Acupuncture Therapy↗
PubMed2001

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↗
PubMed2001

Efficiency of searching the grey literature in palliative care.

A systematic review into palliative care team effectiveness was undertaken which has, inherent in its methodology, grey literature searching. Over 100 letters were written to a systematically chosen range of service providers, commissioners, and experts in combination with requests for information in six UK national cancer/palliative care organization newsletters. In addition, the System for Information on Grey Literature (SIGLE ) database was searched. As a result, 25 document hard copies were received. The documents were, in all but one case (this one study was also highlighted by the SIGLE search), not relevant as they were predominated by annual reports, service descriptions, and needs assessments. In terms of obtaining unpublished studies for possible inclusion in the review, this comprehensive search was unsuccessful and, therefore, it would appear that grey literature searching is not a useful tool in palliative care systematic reviews.

Data Collection↗
PubMed2001

Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials.

There is increasing evidence to suggest that patients with cancer require more information about their disease and its consequences than they receive. In an attempt to address these needs, a variety of methods have been used to facilitate the passage of information from health professionals and other cancer information sources to cancer patients and their families. These include written material, telephone help-lines, teaching and audiovisual aids. Although these efforts have been well received, little attention has been given to the effectiveness of the methods employed. The aims of this paper were to systematically review randomized controlled trials that have evaluated methods of information-giving to cancer patients and their families. Relevant literature was identified through computerized databases, Internet cancer sites and bibliography searches. Multiple reviewers independently analysed the methodological quality of the papers according to agreed criteria. From this process, 10 studies were identified. Interventions ranged from written information to audiotapes, audiovisual aids and interactive medium. Individually tailored methods such as patient care records and patient educational programmes were also reviewed. The evidence indicated that the interventions had positive effects on a number of patient outcomes, such as knowledge and recall, symptom management, satisfaction, preferences, health care utilization and affective states. This was above and beyond the usual care provision. In the majority of studies the interventions had no effect on psychological indices. Furthermore, the review highlighted that certain methods should be based on individual preferences for information rather than uniformly administered.

Adult↗
PubMed2001

Accounts of carers' satisfaction with health care at the end of life: a comparison of first generation black Caribbeans and white patients with advanced disease.

While much research has described experiences at the end of life, no studies have explored the black Caribbean perspective. This paper compares the final year of life of first generation black Caribbeans and white patients with advanced disease in an inner London health authority, focusing on their satisfaction with service provision in both primary care and acute settings using face-to face interviews with carers of deceased patients. Of the 106 black Caribbean patients and 110 white deceased patients identified as dying during the study period 50 interviews per ethnic group were conducted with family members or close friends, a response rate of 47% and 45%. Even though examples of excellent and good care were cited, a larger proportion of negative satisfaction ratings of health care was recorded among respondents representing black Caribbean patients. This was true for all health care settings, particularly primary care, but less so for specialist palliative care nurses. However, few black Caribbean patients accessed specialist palliative care nurses or hospices. Qualitative data provided a deeper insight into the black Caribbean experience care at the end of life. We recommend that where examples of best practice in palliative care and culturally sensitive provision are evident they be extended to more health care professionals through education and training. Access to specialist palliative care services needs to be improved.

Adolescent↗