Effectiveness and cost‐effectiveness of home palliative care services for adults with advanced illness and their caregivers Stable (no update expected for reasons given in 'What's new')
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 summarise the current evidence on cost‐effectiveness.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 We contacted 17 experts and researchers for unpublished data.Selection criteria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.
Barbara Gomes, Natalia Calanzani, Vito Curiale, Paul McCrone, Irene J Higginson
Plain language summary
Effectiveness and cost‐effectiveness of home‐based palliative care services for adults with advanced illness and their caregivers
When faced with the prospect of dying with an advanced illness, the majority of people prefer to die at home, yet in many countries around the world they are most likely to die in hospital. We reviewed all known studies that evaluated home palliative care services, i.e. experienced home care teams of health professionals specialised in the control of a wide range of problems associated with advanced illness – physical, psychological, social, spiritual. We wanted to see how much of a difference these services make to people's chances of dying at home, but also to other important aspects for patients towards the end of life, such as symptoms (e.g. pain) and family distress. We also compared the impact on the costs with care. On the basis of 23 studies including 37,561 patients and 4042 family caregivers, we found that when someone with an advanced illness gets home palliative care, their chances of dying at home more than double. Home palliative care services also help reduce the symptom burden people may experience as a result of advanced illness, without increasing grief for family caregivers after the patient dies. In these circumstances, patients who wish to die at home should be offered home palliative care. There is still scope to improve home palliative care services and increase the benefits for patients and families without raising costs.
Barbara Gomes, Natalia Calanzani, Vito Curiale, Paul McCrone, Irene J Higginson
Implications for practice
The results provide reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer. The effects found are relevant in practice for two reasons. First, the effect on death at home, with a pooled OR of 2.21 and NNTB of 5, is clinically significant; larger, for example, than the beneficial effect of gabapentin for treating neuropathic pain as compared to placebo (NNTB 6 for achieving at least 30% pain relief and NNTB 7 for achieving at least 50% pain relief) (Moore 2011). Increasing the chances of dying at home is not an easy task, with influence by a complex network of factors (Gomes 2006). This is reflected, for example in the rate at which home death rates increase in countries where they are increasing, e.g. 0.4 percentual point per year from 2004 to 2010 in England and Wales despite the existence of a national strategy for end of life care focused on enabling people to die in their place of choice, which for most is home (Gomes 2012a). It is also worth noting that the control groups in our review received a form of 'active comparator' (usual care) not just a placebo (particularly in countries where primary care and home care are well developed), hence comparative effects are expected to be small, as found for symptom burden. Second, although the findings on cost‐effectiveness were inconclusive, even evidence of no effect on other outcomes with slightly higher costs would be enough to justify the existence of home palliative care services as they exist to fulfil the desire of many people to live at home in the last days of their life.
The decision for someone with an advanced illness to start receiving home palliative care should balance the benefits, potential downsides and areas of uncertainty, integrating what matters most to that person and their preferences, as well as the views of caregivers. It is known that there is a minority of people who prefer not to die at home (inpatient hospice is often the second most frequent preference; Higginson 2000); there is also a minority that change their mind as the illness progresses (Gomes 2013). In some circumstances a death at home may not be appropriate. For example, a family may keep a patient at home because of lack of resources, healthcare insurance, access to inpatient beds, or awareness of alternatives. There are also unexpected acute events that make an ED visit or admission inevitable or appropriate (Beynon 2011). This requires the existence of palliative care services in other settings (e.g. in hospitals, inpatient hospices and nursing homes).
Policy makers and service planners can now calculate the extent to which current home palliative care services may need expansion locally on the basis of current and target home death rates, applying NNTB from this meta‐analysis to current and projected local need. Attention should also be given to cultural variations in preferences for dying at home. For example, a recent population survey of 9344 adults across seven EU countries showed that the preference to die at home if faced with advanced cancer varied from 51% in Portugal to 84% in the Netherlands, with country variation unexplained by differences in age and gender distributions (Gomes 2012b). It is possible that differences in preferences relate to local care provision or macro‐social, economic and cultural factors. A recent systematic review of preferences for dying at home reported even more heterogeneity in estimates among studies with patients (Gomes 2013). Improvements to existing home palliative care services should also be informed by an appraisal of the format, components and resources of the different models examined and what people value, particularly those that improved outcomes for patients or caregivers, or both, but also innovative features of home palliative care. Negative effects on caregivers (e.g. caregiver burden) and impact on costs should be carefully monitored.
Implications for research
This review demonstrates clear benefits of home palliative care in helping patients, particularly those with advanced cancer, to die at home with reduced symptom burden and without impacting on caregiver grief. Further meta‐analyses on symptom burden and caregiver grief would produce more robust data but for this to happen, future studies need to harmonise measurement and reporting practices.
More work is needed to study cost‐effectiveness especially for patients with non‐malignant conditions and their caregivers, 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. Shared methodologies across studies would enable examination of outcomes where the evidence is conflicting, inconclusive, limited or suggests no effect. Further primary research should be powered and include a concurrent economic evaluation. New home palliative care interventions must respond to the challenges ahead, posed by rapidly ageing populations with increased complexity and growing need for home palliative care; these are international challenges (Gomes 2008; Gomes 2011). Research in middle‐income and low‐income countries does not yet exist.
A limitation of the evidence found in this review is the heterogeneity in the characteristics of home palliative care interventions and the control interventions called 'usual care'. Some of this heterogeneity relates to differences between countries and contexts but also in the proposed models of home palliative care (e.g. in the US 'hospice care' takes over all care including home nursing whereas UK models of home palliative care are more advisory except in Grande 1999). This must be taken into account and further research must define better the usual care provided locally and what parts of the intervention are likely to produce benefits and what parts are less effective.Get full text at The Cochrane Library
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