Irene J. Higginson

Using quality of life measures in the clinical setting

This is the second in a series of five articles In modern medicine the traditional way of assessing change in patients has been to focus on laboratory or clinical tests. At its most simple this involves measuring pulse, blood pressure, and temperature, and carrying out physical examinations. At more complex levels it may include haematological analysis, computed tomography, radiography, organ function tests, genetic analysis, and other investigations. While these give important information about the disease, especially about chronic and progressive diseases, it is impossible to separate disease from an individuals personal and social context. No illness exists in a vacuum. One way of capturing the personal and social context of patients is to use quality of life measures.1 These are accepted as outcome measures in clinical research but are rarely used in routine clinical practice, despite the fact that Florence Nightingale was one of the first clinicians to insist on measuring the outcome of routine care to evaluate treatment.2 This article reviews the challenges of using quality of life measures in clinical practice including selecting appropriate measures, analysing data, providing feedback, interpreting results, and incorporating these measures into clinical decision making. Practical ways of resolving the tension between the need for approaches suitable in the clinical encounter and the highly individualised nature of quality of life are also examined. #### Summary points Using quality of life measures in clinical practice ensures that treatment and evaluations focus on the patient rather than the disease The measures are potentially useful in both the clinical encounter and in quality improvement They are not a substitute for measures of disease outcomes and may not always be the most appropriate patient centred outcome to assess Measures developed for research often cannot easily be used in clinical practice Measures that form an integral part of treatment planning …

Where people die (1974—2030): past trends, future projections and implications for care:

Background: Ageing nations have growing needs for end of life care, but these have never been projected in detail. We analysed past trends in place of death (1974—2003) and projected likely trends to 2030 in England and Wales and from these need for care. Methods: Mortality trends and forecasts were obtained from official statistics. Future scenarios were modelled using recent five-year trends in age and gender specific home death proportions to estimate numbers of deaths by place to 2030, accounting for future changes in the age and gender distribution of deaths. Results: Annual numbers of deaths fell by 8% from 1974 to 2003, but are expected to rise by 17% from 2012 to 2030. People will die increasingly at older ages, with the percentage of deaths among those aged 85 and expected to rise from 32% in 2003 to 44% in 2030. Home death proportions fell from 31% to 18% overall, and at an even higher rate for people aged 65 and over, women and noncancer deaths. If recent trends continue, numbers of home deaths could reduce by 42% and fewer than 1 in 10 will die at home in 2030. Annual numbers of institutional deaths (currently 440936) will be 530409 by 2030 (20% increase). Conclusions: In England and Wales home deaths have been decreasing. The projections underline the urgent need for planning care to accommodate a large increase of ageing and deaths. Either inpatient facilities must increase substantially, or many more people will need community end of life care from 2012 onwards. Palliative Medicine 2008; 22 : 33—41

Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group.

OBJECTIVES: To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and non-specialist palliative care settings throughout the UK. DESIGN: A systematic literature review of measures appropriate for use in palliative care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to palliative care, and whether similar items had shown to be valid as part of another measure. A staff completed version was developed to facilitate data collection on all patients throughout their care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. SETTING: Eight centres in England and Scotland providing palliative care, including inpatient care, outpatient care, day care, home care, and primary care. PATIENTS: A total of 450 patients entered care during the study period. Staff collected data routinely on patients in care long enough to be assessed (n = 337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. MAIN MEASURES: The Palliative Care Outcome Scale (POS), the European Organisation for Research on Cancer Treatment, and the Support Team Assessment Schedule. RESULTS: The POS consists of two almost identical measures, one of which is completed by staff, the other by patients. Agreement between staff and patient ratings was found to be acceptable for eight out of 10 items at the first assessment. The measure demonstrated construct validity (Spearman rho = 0.43 to 0.80). Test/re-test reliability was acceptable for seven items. Internal consistency was good (Cronbachs alpha = 0.65 (patients), 0.70 (staff)). Change over time was shown, but did not reach statistical significance. The questionnaire did not take more than 10 minutes to complete by staff or patients. CONCLUSION: The POS has acceptable validity and reliability. It can be used to assess prospectively palliative care for patients with advanced cancer.

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.

Do hospital-based palliative teams improve care for patients or families at the end of life?

To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies were included if they evaluated palliative care teams working in hospitals. Data were extracted by two independent reviewers. Studies were graded using two independent hierarchies of evidence. A Signal score was used to assess the relevance of publications. Two analyses were conducted. In a qualitative meta-synthesis data were extracted into standardized tables to compare relevant features and findings. In quantitative meta-analysis we calculated the effect size of each outcome (dividing the estimated mean difference or difference in proportions by the samples standard deviation). Nine studies specifically examined the intervention of a hospital-based palliative care team or studies. A further four studies considered interventions that included a component of a hospital or support team, although the total intervention was broader. The nature of the interventions varied. The studies were usually in large teaching hospitals, in cities, and mainly in the United Kingdom. Outcomes considered symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Only one of the studies was a randomized controlled trial and this considered a hospital team as part of other services. Most method scores indicated limited research quality. Comparison groups were subject to bias and the analyses were not adjusted for confounding variables. In addition, there were problems of attrition and small sample sizes. Nevertheless, all studies indicated a small positive effect of the hospital team, except for one study in Italy, which documented deterioration in patient symptoms. The Signal scores indicated that the studies were relevant. No study compared different models of hospital team. This review suggests that hospital-based palliative care teams offer some benefits, although this finding should be interpreted with caution. The study designs need to be improved and different models of providing support at the end of life in hospital need comparison. Standardized outcome measures should be used in such research and in practice.

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.

An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial

BACKGROUND Breathlessness is a common and distressing symptom, which increases in many diseases as they progress and is difficult to manage. We assessed the effectiveness of early palliative care integrated with respiratory services for patients with advanced disease and refractory breathlessness. METHODS In this single-blind randomised trial, we enrolled consecutive adults with refractory breathlessness and advanced disease from three large teaching hospitals and via general practitioners in South London. We randomly allocated (1:1) patients to receive either a breathlessness support service or usual care. Randomisation was computer generated centrally by the independent Clinical Trials Unit in a 1:1 ratio, by minimisation to balance four potential confounders: cancer versus non-cancer, breathlessness severity, presence of an informal caregiver, and ethnicity. The breathlessness support service was a short-term, single point of access service integrating palliative care, respiratory medicine, physiotherapy, and occupational therapy. Research interviewers were masked as to which patients were in the treatment group. Our primary outcome was patient-reported breathlessness mastery, a quality of life domain in the Chronic Respiratory Disease Questionnaire, at 6 weeks. All analyses were by intention to treat. Survival was a safety endpoint. This trial is registered with ClinicalTrials.gov, number NCT01165034. FINDINGS Between Oct 22, 2010 and Sept 28, 2012, 105 consenting patients were randomly assigned (53 to breathlessness support service and 52 to usual care). 83 of 105 (78%) patients completed the assessment at week 6. Mastery in the breathlessness support service group improved compared with the control (mean difference 0·58, 95% CI 0·01-1·15, p=0·048; effect size 0·44). Sensitivity analysis found similar results. Survival rate from randomisation to 6 months was better in the breathlessness support service group than in the control group (50 of 53 [94%] vs 39 of 52 [75%]) and in overall survival (generalised Wilcoxon 3·90, p=0·048). Survival differences were significant for patients with chronic obstructive pulmonary disease and interstitial lung disease but not cancer. INTERPRETATION The breathlessness support service improved breathlessness mastery. Our findings provide robust evidence to support the early integration of palliative care for patients with diseases other than cancer and breathlessness as well as those with cancer. The improvement in survival requires further investigation. FUNDING UK National Institute for Health Research (NIHR) and Cicely Saunders International.

What Is the Evidence That Palliative Care Teams Improve Outcomes for Cancer Patients and Their Families

Patients with advanced cancer experience a complex web of problems, all of which interact. Specialist palliative care services have developed to meet these needs, but their effectiveness should be considered. We sought to determine whether specialist palliative care teams achieve their aims and improve outcomes for patients with advanced cancer and their caregivers, in terms of improving symptoms and quality of life and/or reducing the emotional concerns of family caregivers. We conducted a systematic review, searching standard databases augmented by reference lists of earlier reviews. The review focused on specialist (ie, with trained and dedicated professionals) palliative care in the home, hospital, or designated inpatient settings for patients with cancer. Outcomes were pain, symptoms, quality of life, use of hospital services, and anxiety. Studies were excluded if they did not test specialist palliative care services. We identified 8 randomized controlled trials and 32 observational or quasi-experimental studies. Overall, the evidence demonstrated that home, hospital, and inpatient specialist palliative care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, and reduced hospital admissions. The results suggest that specialist palliative care should be part of care for cancer patients. Although the appraisal of evidence found improvements across domains, there is a need to understand better the effects of different models of palliative care and to use standardized outcome measurement.

Communication training for health professionals who care for patients with cancer: a systematic review of effectiveness

BackgroundEffective communication is increasingly recognised as a core clinical skill. However, there is evidence that health and social care professionals still lack basic communication skills.PurposeTo assess the effectiveness of different communication skills training courses for health professionals in cancer care.MethodsWe searched six computerised databases and augmented this with a follow-up of references and grey (unpublished) literature. We included all studies evaluating communication training and assessed methodological quality according to the standard grading system of the Clinical Outcomes Group. Data on author, year, setting, objectives, study design and results were extracted and compared in tabular format.ResultsA total of 47 studies potentially assessing communication training in the area of cancer care were identified. Sixteen papers were included describing 13 interventions. Four were randomised controlled trials (RCTs) (grade I), with samples ranging from 72 to 233 subjects. The others were all grade III. Eleven interventions trained health professionals, two trained medical students. The outcomes measured included communication skills as assessed on audio or video, professionals’ self-report and patient assessment. All the interventions demonstrated modest improvements (effect sizes ranged 0.15–2) and one found deterioration in the outcomes measured.ConclusionCommunication training improves basic communication skills. Positive attitudes and beliefs are needed to maintain skills over time in clinical practice and to effectively handle emotional situations.

Measuring symptoms in terminal cancer: are pain and dyspnoea controlled?

The relationship between cancer patients’ desire for information and their preference for participation in decision making has been examined. Approximately 77% of the 52 patients reported that they had participated in decision making to the extent that they wished, while most of the remaining 23% would have preferred an opportunity to have greater input. Although many of the patients actively sought information, a majority preferred the physician to assume the role of the primary decision maker. Ethically, the disclosure of information has been assumed to be necessary for autonomous decision making. Nevertheless, the results of this study indicate that patients may actively seek information to satisfy an as yet unidentified aspect of psychological autonomy that does not necessarily include participation in decision making.