Sue Hall

Heterogeneity and changes in preferences for dying at home: a systematic review

BackgroundHome-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression.MethodsWe searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966–2011), EMBASE (1980–2011), psycINFO (1967–2011), CINAHL (1982–2011), six palliative care journals (2006–11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed the percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size.Results210 studies reported preferences of just over 100,000 people from 33 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death–this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested.ConclusionsControlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death.

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Pharmacological, behavioural and mechanistic analysis of HIV-1 gp120 induced painful neuropathy

Abstract A painful neuropathy is frequently observed in people living with human immunodeficiency virus type 1 (HIV‐1). The HIV coat protein, glycoprotein 120 (gp120), implicated in the pathogenesis of neurological disorders associated with HIV, is capable of initiating neurotoxic cascades via an interaction with the CXCR4 and/or CCR5 chemokine receptors, which may underlie the pathogenesis of HIV‐associated peripheral neuropathic pain. In order to elucidate the mechanisms underlying HIV‐induced painful peripheral neuropathy, we have characterised pathological events in the peripheral and central nervous system following application of HIV‐1 gp120 to the rat sciatic nerve. Perineural HIV‐1 gp120 treatment induced a persistent mechanical hypersensitivity (44% decrease from baseline), but no alterations in sensitivity to thermal or cold stimuli, and thigmotactic (anxiety‐like) behaviour in the open field. The mechanical hypersensitivity was sensitive to systemic treatment with gabapentin, morphine and the cannabinoid WIN 55,212‐2, but not with amitriptyline. Immunohistochemical studies reveal: decreased intraepidermal nerve fibre density, macrophage infiltration into the peripheral nerve at the site of perineural HIV‐1 gp120; changes in sensory neuron phenotype including expression of activating transcription factor 3 (ATF3) in 27% of cells, caspase‐3 in 25% of cells, neuropeptide Y (NPY) in 12% of cells and galanin in 13% of cells and a spinal gliosis. These novel findings suggest that this model is not only useful for the elucidation of mechanisms underlying HIV‐1‐related peripheral neuropathy but may prove useful for preclinical assessment of drugs for the treatment of HIV‐1 related peripheral neuropathic pain.

Pulsed radiofrequency applied to dorsal root ganglia causes a selective increase in ATF3 in small neurons

Background This is a “proof of concept study” to test the hypothesis that pulsed radiofrequency, PRF, produces cell stress at the primary afferent level without signs of overt thermal damage. We assumed that cell stress would result in impairment of normal function, and used the expression of activating transcription factor 3, ATF3, as an indicator of cellular “stress”.

Smooth Muscle Proliferation and Role of the Prostacyclin (IP) Receptor in Idiopathic Pulmonary Arterial Hypertension

RATIONALE Prostacyclin analogs, used to treat idiopathic pulmonary arterial hypertension (IPAH), are assumed to work through prostacyclin (IP) receptors linked to cyclic AMP (cAMP) generation, although the potential to signal through peroxisome proliferator-activated receptor-γ (PPARγ) exists. OBJECTIVES IP receptor and PPARγ expression may be depressed in IPAH. We wished to determine if pathways remain functional and if analogs continue to inhibit smooth muscle proliferation. METHODS We used Western blotting to determine IP receptor expression in peripheral pulmonary arterial smooth muscle cells (PASMCs) from normal and IPAH lungs and immunohistochemistry to evaluate IP receptor and PPARγ expression in distal arteries. MEASUREMENTS AND MAIN RESULTS Cell proliferation and cAMP assays assessed analog responses in human and mouse PASMCs and HEK-293 cells. Proliferative rates of IPAH cells were greater than normal human PASMCs. IP receptor protein levels were lower in PASMCs from patients with IPAH, but treprostinil reduced replication and treprostinil-induced cAMP elevation appeared normal. Responses to prostacyclin analogs were largely dependent on the IP receptor and cAMP in normal PASMCs, although in IP(-/-) receptor cells analogs inhibited growth in a cAMP-independent, PPARγ-dependent manner. In IPAH cells, antiproliferative responses to analogs were insensitive to IP receptor or adenylyl cyclase antagonists but were potentiated by a PPARγ agonist and inhibited (∼ 60%) by the PPARγ antagonist GW9662. This coincided with increased PPARγ expression in the medial layer of acinar arteries. CONCLUSIONS The antiproliferative effects of prostacyclin analogs are preserved in IPAH despite IP receptor down-regulation and abnormal coupling. PPARγ may represent a previously unrecognized pathway by which these agents inhibit smooth muscle proliferation.

Psychological consequences for parents of false negative results on prenatal screening for Down's syndrome: retrospective interview study

Abstract Objective: To determine the psychological consequences for parents of children with Downs syndrome of having received a false negative result on prenatal screening. Design: Comparison of adjustment of parents who received a false negative result with that of parents not offered a test and those who declined a test. Setting: Parents were interviewed in their own homes. Participants: Parents of 179 children with Downs syndrome (mean age 4 (range 2-6) years). Main outcome measures: Anxiety, depression, parenting stress, attitudes towards the child, and attributions of blame for the birth of the affected child. Results: Overall, regardless of screening history, parents adjusted well to having a child with Downs syndrome. Compared with mothers who declined a test, mothers in the false negative group had higher parenting stress (mean score 81.2 v 71.8, P=0.016, 95% confidence interval for the difference 1.8to 17.0) and more negative attitudes towards their children (124.9v 134.2, P=0.009, −16.2 to −2.4). Fathers in the false negative group had higher parenting stress test scores (77.8 v 70.0, P=0.046, 1.5 to 14.2) than fathers not offered a test. Mothers in the false negative group were more likely to blame others for the outcome than mothers who had not been offered the test (28% v 13%, P=0.032, 3% to 27%). Mothers and fathers in the false negative group were more likely to blame others for this outcome than parents who had declined a test (mothers 28% v 0%, P=0.001, 19% to 37%; fathers 27% v 0%, P=0.004, 17% to 38%). Blaming others was associated with poorer adjustment for mothers and fathers. Conclusions: A false negative result on prenatal screening seems to have a small adverse effect on parental adjustment evident two to six years after the birth of an affected child.

The motivating impact of informing women smokers of a link between smoking and cervical cancer: The role of coherence

This research assessed the role of having a coherent explanation of the link between smoking and cervical cancer in motivating women to stop smoking. In the 1st study, women were given a leaflet with either a detailed or a minimal explanation of the link or no leaflet. The leaflets were similarly effective at providing a coherent explanation. In a cross-sectional analysis, having a coherent explanation moderated the relationship between perceived vulnerability and intention: Higher perceived vulnerability to cervical cancer was associated with greater intention to quit smoking only amongst women with a more coherent explanation of the link between smoking and cervical cancer. This finding was replicated in a 2nd study. These results are consistent with H. Leventhal et al.s (1997) self-regulatory model, which suggests that motivation to change behavior depends not only on perceiving a threat but also on having a coherent model linking the behavior with the threat.

Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families

OBJECTIVE to explore views on advance care planning in care homes for older people. DESIGN qualitative exploration of views from care home staff and the family of residents in care homes for older people. SETTING all care homes for the elderly in two London Boroughs. PARTICIPANTS staff (care managers, nurses and care assistants), community nurses and families. METHODS individual semi-structured interviews. RESULTS themes of the analysis: (i) BENEFITS staff and family revealed positive opinions towards advance care planning. Staff felt it provided choice for residents and encouraged better planning. (ii) Barriers: staff and families perceived residents as reluctant to discuss advance care planning. Some care assistants were reluctant to be involved. Furthermore, families and staff reported prevalence of dementia among residents as another barrier. Nurses and care managers identified both family involvement and unforeseen medical circumstances as problematic. (iii) Facilitators: (a) early initiation of discussions (b) family involvement to establish preferences (c) residents and staff being well-known to each other and (d) staff training, were perceived to facilitate ACP. CONCLUSIONS overall, staff and families support the concept of ACP. Methods to overcome the identified barriers are required to embed ACP within end of life care in care homes.

Feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: A phase II randomized controlled trial of a brief palliative care psychotherapy

Background: A pilot study of Dignity Therapy conducted with hospice patients reported high levels of self-reported benefits of the psychotherapy. Aim: To assess the feasibility, acceptability and potential effectiveness of Dignity Therapy to reduce distress in older people in care homes. Design: A randomized controlled open-label trial (ISRCTN37589515). Setting and participants: 60 residents aged 65+ with no major cognitive impairment living in care homes in London, UK. Intervention: Dignity Therapy, a brief palliative care psychotherapy. Outcomes: Potential effectiveness (dignity-related distress, depression, hopefulness, quality of life at baseline and 1 and 8-week follow-up); acceptability (residents’ views on self-reported benefits of Dignity Therapy/the Dignity Therapy study); and feasibility (time taken to deliver the intervention). Results: We randomized 60/755 (8%) residents: 29 – control, 31 – intervention. We found no significant differences between groups on measures of potential effectiveness at any time. There was a reduction in dignity-related distress across both groups (p = 0.026). The intervention group outperformed the control group on all the acceptability items at both follow-ups. Effect sizes (Cohen’s d) ranged from small (0.25) to large (0.85). These were significant for feeling that Dignity Therapy/the Dignity Therapy study had made their life more meaningful at 2-week follow-up (p = 0.04), and that it would help their families at both follow-ups (p = 0.02 and p = 0.01, respectively). Although it was feasible to deliver the intervention in this setting, it took longer to complete than anticipated. Conclusions: Although Dignity Therapy took longer to deliver than expected, this intervention may be a way of enhancing the end-of-life experiences of residents.

Technologic advances for evaluation of cervical cytology: is newer better?

Among those women who have cervical cancer and have been screened, 14% to 33% of the cases represent failure to detect abnormalities that existed at the time of screening. New technologies intended to improve detection of cytologic abnormalities include liquid-based, thin-layer cytology (ThinPrep, AutoCyte), computerized rescreening (PAPNET), and algorithm-based computer rescreening (AutoPap). This report combines evidence reviews conducted for the U.S. Preventive Services Task Force and the Agency for Healthcare Research and Quality, in which we systematically identified articles on cervical neoplasia, cervical dysplasia, and screening published between January 1966 and March 2001. We note the challenges for improving screening methods, providing an overview of methods for collecting and evaluating cytologic samples, and examining the evidence about the diagnostic performance of new technologies for detecting cervical lesions. Using standard criteria for evaluation of the diagnostic tests, we determined that knowledge about the sensitivity, specificity, and predictive values of new technologies is meager. Only one study of liquid-based cytology used a reference standard of colposcopy, with histology as indicated, to assess participants with normal screening results. Lack of an adequate reference standard is the overwhelming reason that test characteristics cannot be properly assessed or compared. Most publications compare results of screening using the new technology with expert panel review of the cytologic specimen. In that case, the tests are not independent measures and do nothing to relate the screening test findings to the true status of the cervix, making determination of false-negatives, and thus sensitivity, specificity, and negative predictive value, impossible. We did not identify any literature about health outcomes or cost effectiveness of using these tools in a system of screening. For the purposes of guiding decision making about choice of screening tools, the current evidence is inadequate to gauge whether new technologies are “better” than conventional cytology. Target Audience: Obstetricians & Gynecologists, Family Physicians Learning Objectives: After completion of this article, the reader will be able to list the various new technologic advances for evaluation of cervical cytology, explain how each of the new advances functions, and list the potential problems with each of the new methods.