What are the main palliative care symptoms and concerns of older people with multimorbidity?-a comparative cross-sectional study using routinely collected Phase of Illness, Australia-modified Karnofsky Performance Status and Integrated Palliative Care Outcome Scale data.

BACKGROUND: Older people with multimorbidities are projected to be the main recipients of palliative care in the coming decades. However, because their specific palliative care needs are poorly understood and service response is underdeveloped, older people with multimorbidity are less likely to receive palliative care. Innovative specialist palliative care services are developing to address this gap, but with little underpinning evidence. Therefore the aim of this paper is to describe the clinical characteristics, symptoms and other concerns of older people with multi-morbidity referred to a new community palliative care service; and to explore possible implications for service delivery by comparing this service population with people receiving standard community-based specialist palliative care. METHODS: Cross-sectional study comparing routinely collected demographic, clinical, and point-of-care patient-level outcomes data [Phase of Illness, Australia-modified Karnofsky Performance Status (AKPS) and Integrated Palliative care Outcome Scale] across an innovative palliative service-Bromley Care Coordination (BCC) with patients in the standard specialist community palliative care (SC). Composite case studies of BCC patients provide more in-depth illustration of results. RESULTS: Compared with patients who received Standard Care, patients seen by BCC were more often female, older and with a non-malignant diagnosis (16% cancer in BCC versus 72% cancer in SC). Patients across the two services had a similar symptom profile at first contact in the pairwise complete case analysis. SC patients reported more frequently pain, nausea, vomiting, constipation, anxiety and family concern, and BCC patients reported more frequently mobility concerns. Functional status was lower for BCC patients on entry into the service (AKPS 40 median versus SC AKPS of 50). BCC patients stayed longer in each phase of illness (56 days median versus SC 41 days), with a more unpredictable subsequent phase. CONCLUSIONS: The population of older people with multimorbidity has not been routinely recognized as having specialist palliative care needs. However, this evaluation shows that, at first contact, the symptoms and concerns across both service populations was surprisingly similar. Nevertheless, patterns of symptoms may differ between populations over time. Longitudinal prospective data are needed to examine these changes overtime, and the relationship with multimorbidity.

The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: a cluster randomised controlled trial.

BACKGROUND: The provision of quality end-of-life care is increasingly on the national agenda in many countries. In the United Kingdom, the Gold Standards Framework for Care Homes programme has been promoted as a national framework for improving end-of-life care. While its implementation is recommended, there are no national guidelines for facilitators to follow to undertake this role. AIM: It was hypothesised that action learning alongside high facilitation when implementing the Gold Standards Framework for Care Homes programme will result in a reduced proportion of hospital deaths for residents and improvement in the care home staff ability to facilitate good end-of-life care. DESIGN: A cluster randomised controlled trial where 24 nursing homes received high facilitation to enable them to implement the Gold Standards Framework for Care Homes programme. The managers of 12 nursing homes additionally took part in action learning sets. A third group (14 nursing homes) received the 'standard' Gold Standards Framework for Care Homes facilitation available in their locality. SETTING/PARTICIPANTS: In total, 38 nursing homes providing care for frail older people, their deceased residents and their nurse managers. RESULTS: A greater proportion of residents died in those nursing homes receiving high facilitation and action learning but not significantly so. There was a significant association between the level of facilitation and nursing homes completing the Gold Standards Framework for Care Homes programme through to accreditation. Year-on-year change occurred across all outcome measures. CONCLUSION: There is a danger that without national guidelines, facilitation of the Gold Standards Framework for Care Homes programme will vary and consequently so will its implementation. The nurse manager of a care home must be actively engaged when implementing the Gold Standards Framework for Care Homes programme.

Development and initial validation of a new outcome measure for hospice and palliative care: the St Christopher's Index of Patient Priorities (SKIPP).

OBJECTIVE: To develop and conduct a preliminary psychometric analysis of a hospice and palliative care patient-reported outcome measure to detect patients' perceptions of change in quality of life (QoL) and issues of concern, and views of service benefit. METHODS: Following pilot testing and cognitive interviewing, St Christopher's Index of Patient Priorities (SKIPP) was administered twice to hospice inpatients and homecare patients. QoL was rated 'now', and retrospectively 'before starting hospice care' or 'at the time of the first interview'. Patients nominated and rated progress with main concerns, rated the difference the service was making, and completed palliative care outcome scale. Patients completed SKIPP again within 24 h to measure test-retest reliability. RESULTS: QoL scores 'now' differed significantly from retrospective scores made at same time: QoL increased with hospice care when patients 'looked back' on previous QoL. Four-fifths reported that their first concern had got 'a little'/ 'much' better since initial service contact: this declined subsequently. Four-fifths at both time points said the hospice had made 'a lot of difference' to them. No significant differences were noted between time points on palliative care outcome scale items. Test-retest analyses were prevented by low numbers. CONCLUSIONS: SKIPP can detect patients' perception of change in QoL and main concerns, and the difference patients think the service has made to them. Its design with current and retrospective components addresses response shift and means it can be used for quality improvement or clinical purposes with only one administration, an advantage in frail populations. It is therefore a useful addition to hospice and palliative care patient-reported outcome measures.

I've had a good life, what's left is a bonus: factor analysis of the Mental Adjustment to Cancer Scale in a palliative care population.

BACKGROUND: The Mental Adjustment to Cancer Scale is an assessment tool commonly used to measure coping in cancer patients, which characterises adaptive coping under the label of 'fighting spirit'. AIM: This study explores adaptation in patients with advanced cancer, by examining the factor structure of the Mental Adjustment to Cancer Scale. Further aims were to examine associations between types of coping and psychological outcomes measured at the same time (time 1) and 4 weeks after referral to palliative care services (time 2). DESIGN: A cross-sectional study with a follow-up assessment 4 weeks later. Factor analysis examined the structure of the Mental Adjustment to Cancer Scale at time 1. SETTING/PARTICIPANTS: A total of 275 patients with advanced cancer receiving palliative care, of whom 193 took part at follow-up. RESULTS: This study provided evidence for the internal consistency and validity of a new scale of 'acceptance and positivity' for use in advanced cancer patients. Patients with a desire for hastened death had lower acceptance and positivity, and patients with higher global quality of life reported a higher level. Social support was positively associated with acceptance and positivity. Higher scores on the acceptance and positivity scale were associated with reduced odds of a desire for hastened death at time 2. CONCLUSION: Adaptation to advanced cancer differs from adaptation to early stage cancer, comprising a general acceptance of the illness and trying to make the most of the time that is left. Individuals with low social support were less likely to evidence appropriate adaptation to their illness.

The provision of care for residents dying in U.K. nursing care homes.

OBJECTIVES: to identify the care currently provided to residents dying in U.K. nursing care homes. METHOD: study participants were residents who had died within 38 nursing care homes in southeast England over a 3-year period. The nursing care homes had been recruited to take part in a cluster randomised controlled trial looking at different models of facilitation while implementing the Gold Standards Framework in Care Homes (GSFCH) programme. Two researchers examined the notes and daily records of all residents who died in each of these homes between the 1 June 2008 and the 31 May 2011. RESULTS: a total of 2,444 residents died during the 3-year period. Fifty-six percent of these residents died within a year of admission. The support from specialist healthcare services to residents during their last 6 months of life was variable. CONCLUSIONS: nursing care homes have established links with some external healthcare providers. These links included the GP, palliative care nurses and physiotherapy. As dependency of resident increase with 56% residents dying within a year of admission these links need to be expanded. The provision of health care that meets the needs of future nursing care home residents needs to be 'proactively' obtained rather than left to chance.

The factor structure of the PHQ-9 in palliative care.

OBJECTIVES: The Primary Care Evaluation of Mental Disorders Patient Health Questionnaire (PRIME-MD PHQ-9) is a common screening tool designed to facilitate detection of depression according to DSM-IV criteria. However, the factor structure of the PHQ-9 within the palliative care population has not been evaluated. METHODS: 300 participants completed the PHQ-9 within one week of referral to a palliative care service. Participants completed the PHQ-9 again four weeks later (n=213). Confirmatory factor analysis (CFA) and multiple-group CFA were undertaken to test the factor structure of the PHQ-9 and evaluate model invariance over time. RESULTS: A two-factor model comprising somatic and cognitive-affective latent factors provided the best fit to the data. Multiple-group CFA suggested model invariance over time. Structural equation modelling revealed that follow-up (time 2) cognitive-affective and somatic symptoms were predicted by their baseline (time 1) factors. CONCLUSIONS: The PHQ-9 measures two stable depression factors (cognitive-affective and somatic) within the palliative care population. Studies are now required to examine the trajectories of these symptoms over time in relation to clinical intervention and events.

Illness perceptions, adjustment to illness, and depression in a palliative care population.

CONTEXT: Representations of illness have been studied in several populations, but research is limited in palliative care. OBJECTIVES: To describe illness representations in a population with advanced disease receiving palliative care and to examine the relationship between illness perceptions, adaptive coping, and depression. METHODS: A cross-sectional survey of 301 consecutive eligible patients recruited from a palliative care service in south London, U.K. Measures used included the Brief Illness Perception Questionnaire (Brief IPQ), the Mental Adjustment to Cancer (MAC) Scale, and the Primary Care Evaluation of Mental Disorders Patient Health Questionnaire-9. RESULTS: Scores were not normally distributed for most questions on the Brief IPQ. The correlations found between items on the Brief IPQ were understandable in the context of advanced disease. MAC helplessness-hopelessness and fighting spirit were highly correlated with items on the Brief IPQ in opposite directions. The Brief IPQ domains of consequences, identity, concern, personal control, and emotion were associated with depression, a relationship that was not explained by adaptive coping. Seven causal attribution themes were identified: don't know, personal responsibility, exposure, pathological process, intrinsic personal factors, chance, fate or luck, and other. Both lung cancer diagnosis and gender were found to be independently associated with personal responsibility attribution. None of the attribution themes were associated with the presence of depression. CONCLUSION: Assessment of illness perceptions in palliative care is likely to yield important information about risk of depression and will help clinicians to personalize management of advanced disease.

Predictors of non-remission of depression in a palliative care population.

BACKGROUND: Prospective studies of depression in palliative care are rare. Two studies that examine depression prospectively in patients with advanced disease have not looked at predictors of remission. AIMS: to explore prospective predictors of non-remission of depression in palliative care. DESIGN AND PARTICIPANTS: The study design comprised two data collections: initial assessment on referral to a palliative care service in South London, UK, and a four-week follow-up. Seventy six participants met the criteria for 'any depressive syndrome' at the time 1 assessment, using the PRIME-MD, who also participated at time 2. The outcome measure was remission (N = 39) or non-remission (N = 37) of depression by time 2. RESULTS: The findings showed that reporting low social support from family and friends at time of referral was the most powerful risk factor for non-remission. There was also a strong association between improved physical symptoms, from time 1 to 2, and remission of depression. CONCLUSIONS: This study in palliative care is the first of which we are aware to explore factors associated with non-remission of depression. Depressed patients identified with low social support on referral to palliative care services might particularly benefit from additional psychosocial care in the treatment of their depression. This study provides evidence that effective physical symptom management in palliative care may be a valuable intervention for depressive symptoms.

Gender differences in prevalence of depression among patients receiving palliative care: the role of dependency.

BACKGROUND: in community studies the prevalence of depression is higher in women than men; however, in palliative care settings this relationship is usually less strong, absent or reversed. AIM: to identify reasons for excess depression among men receiving palliative care. DESIGN: cross-sectional study. SETTING/PARTICIPANTS: we interviewed 300 patients recruited from a large hospice in South East London. Depression was measured using the Primary Care Evaluation of Mental Disorder. RESULTS: the higher prevalence of depression among men was not explained by a higher prevalence of particular types of cancer nor confounding by other covariates. Possible effect modifiers were examined. Depending on others for help with basic tasks (eating, dressing, washing or using the toilet) was a risk factor for depression in men only, with 37.8% of dependent men being depressed compared to 2.4% of similarly affected women (OR = 24.3, 3.1-193.2, p = 0.003). We observed a dose-response effect between the level of dependency and depression in men (p for trend = 0.01). CONCLUSION: depending on others for help with basic tasks appears to contribute to the burden of depression among men with terminal illness. This gender-specific association may explain why the usual gender differences in depression prevalence are not observed in palliative care.

The clinical epidemiology of depression in palliative care and the predictive value of somatic symptoms: cross-sectional survey with four-week follow-up.

This cross-sectional survey aimed to determine the prevalence and remission of depression in patients receiving palliative care and to ascertain the predictive value of somatic symptoms in making the diagnosis. Three hundred consecutive patients were interviewed within one week of their initial assessment by a specialist nurse at a palliative care service with in-patient and homecare facilities in south London, UK. Depression was assessed using the PRIME-MD PHQ-9. Presence of somatic symptoms (fatigue, sleep disturbance, poor appetite) was determined using the EORTC-QLQ-C30 quality of life questionnaire. Fifty-eight (19.3% [15.3 to 23.3]) patients met criteria for Major Depressive Disorder; 109 (36.3% [32.3 to 40.3]) met criteria for 'Any depressive syndrome'. Patients with Major Depressive Disorder were more likely to be male, and to have non-malignant disease, pain, poor performance status and desire for an early death. Of those patients with Major Depressive Disorder at baseline, 69% (27/39) had remitted four weeks later. Of those not depressed at baseline, 11% (19/174) met criteria for depression at follow-up. The positive predictive values of sleep disturbance, poor appetite and fatigue were low (<24%), whereas the negative predictive values of these symptoms were high (>89%). The high prevalence of depression in palliative care attests to the need for psychological assessment and support. Depression in patients receiving palliative care is unstable, suggesting that symptoms should be carefully monitored.

Prevalence, course and associations of desire for hastened death in a UK palliative population: a cross-sectional study.

OBJECTIVES: To determine the prevalence, severity and remission of desire for hastened death (DHD) in a UK representative sample of patients with advanced disease receiving palliative care and to examine the associations of desire for death. DESIGN: A cross-sectional survey with 4-week follow-up. SETTING: St Christopher's Hospice, Sydenham, South London, which is a large hospice with homecare, outpatient and inpatient facilities serving five London boroughs. PARTICIPANTS: 300 patients newly referred to the hospice for palliative care. MAIN OUTCOME MEASURES: The Desire for Death Rating Scale (DDRS). RESULTS: At T1 33/300 (11%) reported DHD and 11/300 (3.7%) had more serious or pervasive DHD. Of those who expressed DHD at T1 and were interviewed at both time points, 35% no longer reported these thoughts. Of those who reported no DHD at T1, 8% reported DHD at T2. The majority of those who had more severe DHD at T1 had a reduced DHD score by T2. Factors associated with T1 DHD included presence of non-malignant disease, depression, more severe physical symptoms, hopelessness and perceived loss of dignity. CONCLUSIONS: The prevalence of DHD was at the lower end of that seen in previous studies using similar samples. More severe DHD was uncommon and for most part remitted to some extent during the study. The provision of symptom control and timely detection and intervention for depression coupled with a focus on optimising function, instilling hope and preserving dignity are likely to contribute to alleviation of DHD in patients with advanced illness.

St Christopher's and the future.

The founding vision of St Christopher's Hospice was based on a recognition that permeating mainstream health care services would be essential and an emphasis on an adaptable philosophy rather than a building. Today, demographic and disease related changes mean that need and demand for end-of-life care will inevitably outstrip professional and financial resource. Hospices must engage with the development of cost-effective models of service delivery and rational planning. Only partnership working with the National Health Service, care homes, and others will ensure that appropriate care is available to everyone wherever the bed in which they die, regardless of diagnosis. Only collaboration and active engagement will ensure that future strategy in end-of-life care retains the original insight that its focus rightly includes not only patients but also the social context that will be affected by their death. Cost and patient choice dictate an emphasis on care at home. Health-promoting, public education and family-focused strategies will be essential. At a pivotal moment for the delivery of health care generally, hospices can play a vital part by marrying the role of "insistent conscience" of the health care service with continued cost-effective clinical innovation.