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Irene J Higginson

Publications and source records attributed to Irene J Higginson.

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

A tale of two cities: factors affecting place of cancer death in London and New York.

BACKGROUND: Most American and English cancer patients prefer to die at home. Factors associated with greater likelihood of dying at home have been contradictory in many studies and no studies have compared the effects of factors in different countries. The objective of this paper is to compare the factors affecting place of cancer death in two major cities, New York and London. METHODS: We use data on all individuals aged >/=40 dying of cancer in London (59 604) and New York City (51 668) in the years 1995 through 1998. The probability of death at home is examined in each city as a function of gender, age group (40-55, 56-64, 65-74, 75+), year, type of cancer, and area socioeconomic status, using multiple logistic regression. RESULTS: Although the probability of death at home is the same in the two cities (approximately 1 in 5), being female lowers the odds of death at home by approximately 7% in London, and raises it by approximately 22% in New York. Older age is associated with increased odds of dying at home in New York but decreased odds of dying at home in London. Being in the lowest tercile of socioeconomic status (relative to the highest) lowers the odds of death at home by 22% in London and 39% in New York. CONCLUSION: Site of death varies significantly by patient and area characteristics in both cities, an understanding, which should be taken account of in future planning of end-of-life care.

Adult↗
PubMed2006

Study protocol: delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service.

BACKGROUND: Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. METHODS/DESIGN: Using the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patients newly referred to the new service were randomised to either receive the palliative care service immediately (fast-track) or after a 12-week wait (standard best practice). Face to face interviews were conducted at baseline (before intervention), and at 4-6, 10-12 (before intervention for the standard-practice group), 16-18 and 22-24 weeks with patients and their carers using standard questionnaires to assess symptoms, palliative care outcomes, function, service use and open comments. Ethics committee approval was granted separately for the qualitative phase and then for the trial. DISCUSSION: We publish the protocol trial here, to allow methods to be reviewed in advance of publication of the results. The MRC Framework for the Evaluation of Complex Interventions was helpful in both the design of the service, methods for evaluation in convincing staff and the ethics committee to accept the trial. The research will provide valuable information on the effects of palliative care among non-cancer patients and a method to evaluate palliative care in this context.

Journal Article↗
PubMed2006

Interactive technologies and videotapes for patient education in cancer care: systematic review and meta-analysis of randomised trials.

GOALS OF WORK: Patients diagnosed with cancer need education as they face complex decisions. There is limited evidence about the impact of new educational technologies for cancer patients. This paper investigates whether interactive technologies and videotapes for patient education in cancer care improve knowledge, satisfaction or other outcomes. METHODS: Literature search of five computerised databases (Medical Literature Analysis and Retrieval System, Excerpta Medica Database, Cumulative Index to Nursing and Allied Health Literature, Cochrane Controlled Trials Register and Cochrane Database of Systematic Reviews) and bibliography searches identified relevant randomized controlled trials. Two reviewers independently assessed trial quality. Summary effects for knowledge and satisfaction were calculated using random-effects models (RevMan 4.2 software). Continuous data were summarised as weighted mean differences and dichotomous data as odds ratios, each with their respective 95% confidence interval. Standardised effect sizes for these outcomes were calculated and contrasted. RESULTS: Nine randomised control trials with 1,678 patients were identified. Three evaluated the use of videotapes, and six evaluated computer technologies. Studies were of good-quality design but were variable in instruments, content, populations, outcomes and results. Educational technologies showed improved patient knowledge (effect sizes ranging from 0.12 to 1.03). Satisfaction was improved in some studies, but the overall effect was more equivocal--effect sizes ranged (0.05 to 0.40) of benefit for knowledge and from 0 to 0.40 for satisfaction. CONCLUSIONS: The trials present preliminary evaluations of the technology in North America, the UK and Australia. There is a trend to improved knowledge and satisfaction. The ways in which the interventions are delivered and the extent of communication with a health professional affect patient responses.

Computer-Assisted Instruction↗
PubMed2006

End of life content in geriatric textbooks: what is the current situation?

BACKGROUND: Physicians caring for elderly people encounter death and dying more frequently than their colleagues in most other disciplines. Therefore we sought to examine the end-of-life content in popular geriatric textbooks and determine their usefulness in helping geriatricians manage patients at the end of their lives. METHODS: Five popular geriatric textbooks were chosen. Chapters on Alzheimer's disease, stroke, chronic heart failure, chronic obstructive pulmonary disease and lung cancer were examined because of their high mortality rates among the elderly patients. Text relevant to end-of-life care was highlighted. Two reviewers independently coded text into 10 pre specified domains and rated them for the presence of end-of-life information. Content was rated as absent, minimally helpful, or helpful. The proportion of helpful information was calculated. RESULTS: The textbook with the best end-of-life coverage contained 38% helpful information, the worst had only 15% helpful information. Minimally helpful information ranged from 24% to 50%. As much as 61% of the content in one textbook contained no helpful information at all. Of the ten domains, epidemiology, disease progression and prognostic factors were fairly well covered. Information on advance care planning, ethical issues, decision making and effects of death and dying on patient's family were generally lacking under the individual diseases though they were covered as general topics in other parts of the textbooks. All except one textbook dedicated a chapter to the care of the dying. CONCLUSION: This study showed that end-of-life content in geriatric textbooks differed significantly. Most of the textbooks lack good coverage on end-of-life care and more can be done to improve on this.

Journal Article↗
PubMed2006

Factors influencing death at home in terminally ill patients with cancer: systematic review.

OBJECTIVES: To determine the relative influence of different factors on place of death in patients with cancer. DATA SOURCES: Four electronic databases-Medline (1966-2004), PsycINFO (1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous contacts with key experts; hand search of six relevant journals. REVIEW METHODS: We generated a conceptual model, against which studies were analysed. Included studies had original data on risk factors for place of death among patients, > 80% of whom had cancer. Strength of evidence was assigned according to the quantity and quality of studies and consistency of findings. Odds ratios for home death were plotted for factors with high strength evidence. RESULTS: 58 studies were included, with over 1.5 million patients from 13 countries. There was high strength evidence for the effect of 17 factors on place of death, of which six were strongly associated with home death: patients' low functional status (odds ratios range 2.29-11.1), their preferences (2.19-8.38), home care (1.37-5.1) and its intensity (1.06-8.65), living with relatives (1.78-7.85), and extended family support (2.28-5.47). The risk factors covered all groups of the model: related to illness, the individual, and the environment (healthcare input and social support), the latter found to be the most important. CONCLUSIONS: The ne of factors that influence where patients with cancer die is complicated. Future policies and clinical practice should focus on ways of empowering families and public education, as well as intensifying home care, risk assessment, and training practitioners in end of life care.

Attitude to Death↗
PubMed2006

Chest pain: physician perceptions and decision-making in a London emergency department.

STUDY OBJECTIVE: We describe physician perceptions of decision-making for acute coronary syndromes in the emergency department (ED) and the ways in which patient characteristics influence diagnosis. METHODS: This is a qualitative analysis of semistructured interview data from physicians practicing at an ethnically diverse and lower-income London ED. All physicians working more than 3 shifts in the department during a 1-month period were approached for interview. RESULTS: Four themes emerged from the interviews: (1) physicians emphasized the medical history when diagnosing acute coronary syndrome; (2) physicians reported communication barriers as an impediment to diagnosis; (3) physicians cited both epidemiologic data and cultural beliefs when explaining presentation differences between patient groups; (4) physicians interpreted patient complaints by comparing their clinical impressions to a "classic" or "textbook" norm. CONCLUSION: In most cases, physicians relied on the clinical history when making decisions for patients with suspected acute coronary syndromes. In reaching judgments, physicians elicited features of the presentation they thought were salient, interpreted those features in light of epidemiologic knowledge and cultural beliefs, and compared their overall impression of the patient to a "classic" or "textbook" norm. At each step, physicians' perceptions about patients influenced the data gathered and the interpretation of that data. In addition, the expected features of acute coronary syndrome were thought to differ for some patient groups. These results highlight the need for further research into the role of provider beliefs in medical decision-making.

Age Factors↗
PubMed2006

A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease.

Little attention has been paid to the symptom management needs of patients with life-threatening diseases other than cancer. In this study, we aimed to determine to what extent patients with progressive chronic diseases have similar symptom profiles. A systematic search of medical databases (MEDLINE, EMBASE, and PsycINFO) and textbooks identified 64 original studies reporting the prevalence of 11 common symptoms among end-stage patients with cancer, acquired immunodeficiency syndrome (AIDS), heart disease, chronic obstructive pulmonary disease, or renal disease. Analyzing the data in a comparative table (a grid), we found that the prevalence of the 11 symptoms was often widely but homogeneously spread across the five diseases. Three symptoms-pain, breathlessness, and fatigue-were found among more than 50% of patients, for all five diseases. There appears to be a common pathway toward death for malignant and nonmalignant diseases. The designs of symptom prevalence studies need to be improved because of methodological disparities in symptom assessment and designs.

Acquired Immunodeficiency Syndrome↗
PubMed2006

The impact of a breathlessness intervention service (BIS) on the lives of patients with intractable dyspnea: a qualitative phase 1 study.

OBJECTIVE: Disabling breathlessness is the most common symptom of advanced cardiopulmonary disease. It is usually intractable, even when patients receive maximal medical therapy for their underlying condition. A pilot study was undertaken to evaluate a newly formed palliative Breathlessness Intervention Service (BIS). METHODS: The methodology followed the Medical Research Council's Framework for the Evaluation of Complex Interventions (Phase I). Qualitative interviews were completed with patients and relatives who had used the service and clinicians who had referred to it. The focus of the interviews was the participants' experience of using BIS. RESULTS: Patients valued the positive educational approach taken to breathlessness, emphasizing what was possible rather than what had been lost. Non-pharmacological strategies, especially the hand-held fan and exercises, were rated very helpful and new to patients. Participants reiterated that breathlessness was frightening and isolating, exacerbating the disability it caused: the easy access to advice and flexibility of BIS helped to alleviate this. Participants wanted a written record of the advice given. Carers welcomed the focus on their needs. Clinicians valued sharing the management of patients with an intractable problem. SIGNIFICANCE OF RESULTS: This Phase I study has helped to remodel the service rapidly by uncovering the aspects of BIS that users find most valuable and areas that need change or improvement. The BIS needs to provide written information, to reinforce and extend contacts with other agencies to build on support it already provides for patients and carers, and extend its flexibility and accessibility. Providing a "drop-in" service and continuing education after the initial program of contacts is completed could be a useful service development, warranting further evaluation. A qualitative methodology involving service users and referrers can help to shape service development rapidly.

Adult↗
PubMed2006

Is antiretroviral therapy associated with symptom prevalence and burden?

Although distressing pain and other symptoms have been reported at all stages of HIV disease, studies have not taken account of the relative contribution of treatment side-effects and underlying disease. This study aimed to assess the prevalence of symptoms, their burden and the association with use of highly active antiretroviral therapy (HAART). Three hundred and forty-seven gay men with HIV disease completed an online survey, reporting data on age, CD4, viral load, year of diagnosis, HAART use, and the Memorial Symptom Assessment Scale Short Form (MSAS-SF).Those men currently receiving HAART (n=210, 56.6%) reported a higher number of symptoms than those without (14 versus 10.3, P=0.001). Fourteen physical symptoms were significantly more frequent among HAART users. Symptoms of psychological distress were the most common in both groups, ranging from 69.2% to 79.5%. Mean distress indices were higher for those on treatment with respect to both global (P=0.011) and physical (P=0.001) distress. In multivariate analysis, use of HAART was independently associated with number of physical symptoms (b=2.81, P=0.006), and physical distress score (b=2.45, P=0.017); both increasing with HAART use when controlling for age, year of diagnosis, CD4 and viral load. The high symptom prevalence, particularly psychological symptoms, is comparable with end-stage malignant and non-malignant diseases. Greater attention needs to be paid to the assessment and management of burdensome symptoms.

Adolescent↗
PubMed2006

Symptom prevalence and severity in people severely affected by multiple sclerosis.

AIM: This study sought to assess symptom severity and prevalence in people severely affected by multiple sclerosis (MS). METHODS: We collected data on symptoms and problems of patients as self-reported to trained interviewers on standardized questionnaires (including the Palliative Outcome Scale MS symptom checklist, POS-MSS). RESULTS: 52 patients were included, mean age 53 years; 26 had secondary progressive MS, 23 had primary progressive MS, three had other forms; 32/52 were unable to walk independently. Patients reported a mean of nine (median = 8.5, mode = 12) symptoms. Six symptoms affected more than 50% of patients: problems using legs, problems using arms, fatigue/lack of energy, spasms, pain, and feeling sleepy. Higher levels of disability were correlated with greater symptom severity for nine symptoms (Spearman rho ranged 0.28-0.56, p < 0.05). CONCLUSION: Many symptoms in people severely affected by MS are as highly prevalent and severe as those experienced by patients with advanced cancer. Increased disability is associated with increased severity for some symptoms.

Activities of Daily Living↗
PubMed2005

Chest pain: communication of symptoms and history in a London emergency department.

OBJECTIVE: To describe patient-provider interactions for patients in an emergency department with possible acute coronary syndrome (ACS) and to generate hypotheses about how communication might contribute to sociocultural disparities in cardiac care. METHODS: Qualitative analysis of observational data. Seventy-four consecutive patients presenting between 8 a.m. and 10 p.m. over a 4-month period. RESULTS: Participants were aged 40-85 years; 58% were male; 67% were white, 18% Afro-Caribbean, and 15% South East Asian. Observations revealed significant obstacles to communication for the majority of patients. The three most prominent impediments to effective communication were: the use of leading questions to define chest pain, patient-provider conflict as a result of, and contributor to, poor communication, and frank miscommunication due to language barriers and translational difficulties. CONCLUSION: This study documents aspects of the communication process that compromise the quality of the medical history obtained in emergency department patients with suspected ACS. Accurate diagnosis relies on an interaction that weaves both the patient's and the physician's perspective into a shared understanding of events that comprise a patient's history. When diagnostic short cuts are taken to overcome educational, cultural, or language barriers in the medical interview, they may contribute to health care disparities. PRACTICE IMPLICATIONS: Physicians should take a more attentive and careful approach to patient interviewing than was observed here and should be aware of the ways in which they shape the interview through their questions and focus. Good communication skills can be effectively taught at all levels of training and practice.

Adult↗
PubMed2005

Systematic review of specialist palliative day-care for adults with cancer.

GOAL OF WORK: To inform future practice, research and policy in specialist palliative day-care by systematically reviewing the evidence for how the structure and process of this form of care relate to outcomes for adults with cancer. PATIENTS AND METHODS: Medical, nursing and social science computerized databases were searched up until December 2003 for studies of palliative day-care reporting information on service structure, care processes or outcomes including symptom control, quality of life, social and psychological support, and patient and relative satisfaction with care. Qualitative and quantitative studies were assessed for methodological quality and graded, and the findings synthesized into the review. MAIN RESULTS: Twelve observational studies were found that showed the difficulties of evaluating a service already operating and of recruiting a vulnerable population of patients as they deteriorated. Most services are nurse-led, but varied in the facilities, staff mix, care models, activities and places they offered. Patients attending seemed a selected group of those already receiving palliative care who were mostly white, aged over 60 years and retired, with needs for emotional and social support and pain control. There were insufficient studies to provide conclusive evidence of improved symptom control or health-related quality of life, but all qualitative studies found patients valued the social support and opportunity to take part in activities that day-care provided. CONCLUSIONS: There is evidence for high satisfaction among patients selected into day-care, but not yet sufficient to judge whether this improves symptom control or health-related quality of life. Further research should explore selection and access into care, the most effective models of care, its cost, and potential benefits for relatives and carers. Comparison with models of care for older adults and those with mental illness would also be informative.

Adult↗
PubMed2005

Public health and palliative care.

Public health is the science and art of preventing disease, prolonging life, and promoting health through organized efforts of society. There are many reasons why palliative care is now a significant public health issue. Death follows a period of chronic or progressing illness, where symptom control and support are needed. This has a significant effect on our health care resources; 10% to 12% of total health care costs are spent on the end of life. Across the globe, populations are aging, such that by 2020 in many countries almost 1 in 3 people will be aged 65 years or more. After reaching the age of 65, people now live an average of another 12 to 22 years. Cost-effective ways to provide care are needed, and public health has a role in ensuring equity of access to effective care and prevention of suffering and problems during bereavement.

Caregivers↗
PubMed2005

A new approach to eliciting patients' preferences for palliative day care: the choice experiment method.

Palliative day care (PDC) provides individualized care to meet patients' needs and preferences and has posed problems for economic evaluation. Current methods are limited in their ability to capture relevant outcomes. The choice experiment elicits preferences for multiple aspects of care rather than a single outcome. A choice experiment was undertaken at four centers in England. A random effects probit model was used. Interaction terms relating to patient and service characteristics were explored. Seventy-nine patients participated. All characteristics of PDC except bathing and hairdressing were significant (P < 0.001). Access to specialist therapies was three times as important as medical support and twice as important as staying all day. Interaction terms were not significant, except for age and preference for specialist therapies, although the sample may not have been adequate to detect differences. Choice experiments provided useful insights by quantifying preferences for services, providing an alternative to cost-effectiveness analysis.

Adult↗
PubMed2005

Validation and clinical application of the german version of the palliative care outcome scale.

The Palliative Care Outcome Scale (POS) is a multidimensional instrument covering physical, psychosocial, spiritual, organizational, and practical concerns. This study validated the German version of the POS and used the tool in different palliative care settings in Germany and Austria. Patients and staff were asked to complete the POS three times and evaluate the questionnaire and the translation afterwards. One hundred eighteen patients (44 male, 74 female, mean age 63 years, all suffering from advanced cancer) completed the POS one time, 55 patients two times, and 36 patients three times. Spearman's rho was highly significant for pain, other symptoms, anxiety, and life worthwhile in the first two assessments. The third assessment showed significant correlations for pain, other symptoms, anxiety, and family anxiety. Seventy-seven of 87 patients answered questions regarding the scale and the translation. All questions other than "Over the past 3 days, have you felt good about yourself?" were understandable for patients. Almost half of the staff was undecided whether the tool was reflecting the patients' condition. In contrast, the majority of patients liked it. Thus, the German version of the POS is well accepted by patients and staff and appears to be valid, although there are some areas where the scale would benefit from expansion to more closely capture staff and patient concerns.

Austria↗
PubMed2005

Does ethnicity matter? Bereavement outcomes in two ethnic groups living in the United Kingdom.

BACKGROUND: Sociologists, anthropologists, and psychologists agree that grief is a universal phenomenon. Reactions to it are, however, socially constructed and patterned. OBJECTIVE: To compare the outcomes of bereavement among family or close friends of deceased first-generation black Caribbean and white native-born patients living in the United Kingdom. DESIGN: Comparative cross-sectional questionnaire survey in three inner London health authorities administered 10 months after the patient's death. PARTICIPANTS: Family and close friends of 50 deceased first-generation black Caribbean and 50 native-born white patients with advanced disease. MAIN OUTCOME MEASURES: 28-item General Health Questionnaire (GHQ-28), Core Bereavement Items scale, a 17-item measure of grief. RESULTS: The intensity of grief, measured using the Core Bereavement Items was similar between the two groups. Seventy-two respondents had visited their family doctor subsequent to bereavement, and of these, black Caribbean respondents reported more psychological problems. Depression and anxiety measured by the GHQ-28 were significantly higher among black Caribbean respondents (28.00 vs. 21.2) (t-test = -2.28, p = 0.025). Multiple regression analysis revealed this difference was best accounted for by bereavement concerns such as legal and housing problems. CONCLUSIONS: This study has observed higher psychological morbidity among the bereaved Caribbean individuals. Family doctors are a source of support for three-quarters of respondents, and they may need to focus on the needs of black and minority ethnic minorities.

Aged↗