Penny Hansford

A cluster randomized controlled trial of cognitive behaviour therapy for common mental disorders in patients with advanced cancer

BACKGROUND Cognitive behaviour therapy (CBT) has been shown to reduce psychological morbidity in people with cancer, but no randomized controlled trial (RCT) exists in palliative care. We aimed to determine whether home care nurses could be taught to deliver basic cognitive behavioural techniques and so reduce symptoms of anxiety and depression. METHOD Clinical nurse specialists (CNSs) at St Christophers Hospice were randomly allocated to receive training in CBT or continue their usual practice. At the end of the trial, nurses were rated on the Cognitive Therapy First Aid Rating Scale (CTFARS) for CBT competence. Home care patients who scored as possible cases on the Hospital Anxiety and Depression Scale (HADS) entered the trial. Participants received home care nursing visits. Assessments were carried out at baseline, 6, 10 and 16 weeks. RESULTS Eight nurses received CBT training and seven continued practice as usual. The mean CTFARS scores were 35.9 for the CBT nurses and 19.0 for the controls (p=0.02). A total of 328 patients (54%) were possible cases and 80 entered the trial; most of those excluded were too ill to participate. There was an interaction between group and time: individuals receiving CBT had lower anxiety scores over time [coefficient -0.20, 95% confidence interval (CI) -0.35 to -0.05, p=0.01]. No effect of the training was found for depression. CONCLUSIONS It is possible to conduct a randomized trial of psychological interventions in palliative care but there is considerable attrition from physical morbidity and mortality. Nurses can learn to integrate basic CBT methods into their clinical practice. This training may be associated with better outcomes for symptoms of anxiety.

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.

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.

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.

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.

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 Christophers 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 Christophers 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.

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.

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 Christophers 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.

Heart failure care or palliative care? Patients want and need both

Introduction People with advanced heart failure have significant symptom/disease burden. Optimal models of care have not yet been widely tested and evaluated. We aimed to test a novel combined heart failure palliative care service model. Method A mixed-method feasibility study, including comparison with an age- and gender-matched cohort receiving specialist palliative care. Results 27 male and 13 female patients (mean age 84 years, range 60–99) were recruited. Integrated Palliative care Outcome Scale scores, compared with an age- gender- matched specialist palliative care population, demonstrated significantly higher levels of fatigue (mean score 2.6 v 1.9, p = 0.01), poor mobility (2.75 v 1.6, p = 0.00), drowsiness (2.03 v 0.6, p = 0.00), breathlessness (2.2 v 0.9 , p = 0.00), sore/dry mouth (1.4 v 0.6, p = 0.004), depression (1.4 v 0.5, p = 0.002) and not feeling at peace (1.6 v 0.9, p = 0.02). 67% (95% CI: 49–79%) were severely/overwhelmingly affected by poor mobility and 50% (95% CI: 34–65%) were affected by weakness/fatigue in the previous week. In qualitative interviews (8 patients, 6 carers and 2 joint), patients sought heart failure care critical for optimal symptom control, and whilst realistic about the limitations of therapies, wanted parallel support to prepare for and manage future deterioration. Conclusion People with advanced heart failure have considerably greater needs than an age-matched palliative care population. They have realistic expectations about interventions available but identify practical support and appropriately skilled healthcare teams as important to their care. Professionals skilled in both heart failure and palliative care interventions in an integrated service model are needed. References Hogg KJ, Jenkins SMM. Prognostication or identification of palliative needs in advanced heart failure: where should the focus lie? BMJ 2012;98(7):523524 Nordgrena L, Soerensen S. Symptoms experienced in the last six months of life in patients with end-stage heart failure. Eur J Cardiovasc Nurs 2003;2(1):213217 Pattenden JF, Mason AR, Lewin RJP. Collaborative palliative care for advanced heart failure: outcomes and costs from the ‘Better Together’ pilot study. BMJ Support Palliat Care 2013;3(1):69–76 Selman L, Harding R, Beynon T, et al. Modelling services to meet the palliative care needs of chronic heart failure patients and their patients: current practice in the UK. Palliat Med 2007;21(5):385–390