RESUMO
BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. AUTHORS' CONCLUSIONS: The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies.
Assuntos
Feminino , Humanos , Masculino , Cuidadores , Estado Terminal/enfermagem , Serviços de Assistência Domiciliar , Cuidados Paliativos/métodosRESUMO
AIM: To examine fears about dying in an ethnically diverse population sample, and a more homogeneous population sample, aged 65 and over. METHODS: Personal interviews with people aged 65+ living at home responding to two Office for National Statistics Omnibus Surveys in Britain, and two Ethnibus Surveys of ethnically diverse populations in Britain. RESULTS: Ethnically diverse respondents were more likely than British population respondents to express fears about dying on all measures used. Respondents in both samples with better, compared with worse, quality of life had significantly reduced odds of having extreme fears of dying (ethnically diverse sample, OR 0.924 (95% CI 0.898 to 0.951); British population sample, OR 0.981 (95% CI 0.966 to 0.996); both p<0.001). In the latter sample only, older age was protective (OR 0.957; 95% CI 0.930 to 0.985; p<0.001), whereas in the Ethnibus sample, having a longstanding illness (OR 2.024; 95% CI 1.158 to 3.535; p<0.05) and having more relatives to help them (OR 1.134; 95% CI 1.010 to 1.274; p<0.05) increased fears about dying. CONCLUSIONS: Enabling older people to express fears about dying is likely to be important when planning supportive end-of-life care. Practitioners should not assume that fears about dying are the same in different social groups, or that extensive family support is protective against such anxiety. Older people from ethnic minorities had more anxieties about dying than others, and were more likely to express fears the more extensive their family support. These findings have implications for commissioners and practitioners of primary and secondary care.
Assuntos
Atitude Frente a Morte/etnologia , Medo , Idoso , Ásia/etnologia , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Masculino , Qualidade de Vida , Análise de Regressão , Reino Unido/epidemiologia , Índias Ocidentais/etnologiaRESUMO
Although measuring outcomes is essential to ensuring palliative care effectiveness, there is an absence of properly validated measures in many countries. We undertook a cross-cultural adaptation and validation of the Palliative Outcome Scale (POS) into a Spanish (Argentina) language and cultural context. The methodology used a sequence of phases: 1) verification of conceptual equivalence (literature review, professional interviews, and patient focus groups); 2) multiple translations; 3) committee review; and 4) field testing. Psychometric analysis entailed evaluation of quantitative content validity, construct validity, staff and patients' ratings comparison, internal consistency, test-retest reliability, and responsiveness to change. Conceptual equivalence was achieved. Multiple changes were introduced after the translations and field testing in 65 patients and 20 professionals. Content validity was high for all but one item. Construct validity against a validated quality-of-life measure (European Organization for Research and Treatment of Cancer Quality of Life C-30) was confirmed (rho=0.74, P<0.0005). There was acceptable agreement between staff and patients (Cohen's weighted kappa >0.3) for 5/10, 8/10, and 6/9 items at each of three time-point evaluations and good correlation for all but one item (Spearman coefficient >0.7). Internal consistency was acceptable (Cronbach's alpha=0.68-0.69 and 0.66-0.73) for patient and staff ratings, respectively, and test-retest reliability showed very high agreement for every item (>0.80). The Argentine POS showed adequate responsiveness to change, although significant difference was reached for only 3 out of 10 items for patients and staff, respectively. Completion of the POS did not take more than 12 and 6 minutes for patients and staff, respectively. This study indicates that the Argentine POS is a valid and reliable measure of palliative care outcomes with advanced cancer patients.
Assuntos
Cultura , Auditoria Médica/métodos , Avaliação de Resultados em Cuidados de Saúde/métodos , Cuidados Paliativos/normas , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Argentina , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos TestesRESUMO
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.
Assuntos
Síndrome da Imunodeficiência Adquirida/fisiopatologia , Cardiopatias/fisiopatologia , Nefropatias/fisiopatologia , Neoplasias/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Síndrome da Imunodeficiência Adquirida/epidemiologia , Síndrome da Imunodeficiência Adquirida/psicologia , Idoso , Idoso de 80 Anos ou mais , Depressão/psicologia , Feminino , Cardiopatias/epidemiologia , Cardiopatias/psicologia , Humanos , Nefropatias/epidemiologia , Nefropatias/psicologia , Masculino , Pessoa de Meia-Idade , Neoplasias/etiologia , Neoplasias/psicologia , Cuidados Paliativos , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Doença Pulmonar Obstrutiva Crônica/psicologiaRESUMO
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.
Assuntos
Luto , População Negra/psicologia , População Branca/psicologia , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Londres/epidemiologia , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Análise de Regressão , Estresse Psicológico/etnologia , Índias Ocidentais/etnologiaRESUMO
The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing White dependants said that they bore the brunt of caregiving. Compared with those who cared for White dependants, those who cared for Black Caribbean dependants were more likely to be women (84% versus 46%, chi2 = 9.21, 1 d.f., asymptotic P = 0.002) and younger than 55 years of age (73% versus 37%, chi2 = 7.60, 1 d.f., asymptotic P = 0.006). The personal-care tasks which caregivers assisted their dependants with were similar, as were the informal resources they drew on. Many caregivers reported restrictions in their daily lives; this was more pronounced for those who cared for Black Caribbean dependants (chi2 = 6.40, 2 d.f., asymptotic P = 0.041, exact P = 0.039). Research is required to provide a qualitative narrative of the meaning caregivers from different communities ascribe to caring, and the formal and informal resources which they need to support them.
Assuntos
População Negra/etnologia , Cuidadores/estatística & dados numéricos , Doença Crônica/enfermagem , Relação entre Gerações , População Branca/etnologia , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Luto , Doenças Cardiovasculares/etnologia , Doenças Cardiovasculares/enfermagem , Efeitos Psicossociais da Doença , Feminino , Humanos , Londres , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Neoplasias/etnologia , Neoplasias/enfermagem , Estudos Retrospectivos , Índias Ocidentais/etnologiaRESUMO
Attitudes to timeliness of death and euthanasia are little researched among people from different ethnic backgrounds or in socioeconomically deprived areas. We interviewed 50 bereaved family members of people from the black Caribbean community and 50 from the white community in the United Kingdom, using an established questionnaire, and compared reports of their and the reported patient views. In both groups more than two thirds of patients knew they might die, although in more than half of these cases no one had actually told them this. More than half of the respondents thought the deceased had died at the right time. One in five patients had talked about wanting to die sooner but this was not related to family members' own views. One patient in the black Caribbean group and two in the white group had talked about wanting euthanasia. The study highlights that communication with patients needs to be improved among both black Caribbean and white patients, but suggests that attitudes to timeliness of death are similar in both groups.