'Talk to me': a mixed methods study on preferred physician behaviours during end-of-life communication from the patient perspective

Background
Despite the recognized importance of end-of-life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking.

Objective
We sought to understand patient perspectives on physician behaviours during EOL communication.

Design
In this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi-structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data.

Setting and Participants
Seriously ill inpatients at three tertiary care hospitals in Canada.

Results
We found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness.

Conclusions
Avoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.

Cancer and serious mental illness – patient, caregiver and professional perspectives: study protocol

Aim: To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and healthcare professionals involved in their care. Background: Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals and there is little evidence regarding the experiences of patients and caregivers.Design: A qualitative exploration using approximately 36 semi-structured interviews.Methods: Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. Discussion: There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care.

Using the hidden Markov model to capture quality of care in Lombardy geriatric wards

Quality of care is an important aspect of healthcare monitoring, which is used to ensure that the healthcare system is delivering care of the highest standard. With populations growing older there is an increased urgency in making sure that the healthcare delivered is of the highest standard. Healthcare providers are under increased pressure to ensure that this is the case with public and government demand expecting a healthcare system of the highest quality. Modelling quality of care is difficult to measure due to the many ways of defining it. This paper introduces a potential model which could be used to take quality of care into account when modelling length of stay. The Coxian phase-type distribution is used to model length of stay and the associated quality of care incorporated into the Coxian using a Hidden Markov model. Covariates are also introduced to determine their impact on the hidden level to find out what potentially can affect quality of care. This model is applied to geriatic patient data from the Lombardy region of Italy. The results obtained highlighted that bed numbers and the type of hospital (public or private) can have an effect on the quality of care delivered.

A Conditional Approach for Modelling Patient Re-admissions in Hospital using a mixture of Coxian phase-type distributions incorporating Bayes Theorem

The number of elderly patients requiring hospitalisation in Europe is rising. With a greater proportion of elderly people in the population comes a greater demand for health services and, in particular, hospital care. Thus, with a growing number of elderly patients requiring hospitalisation competing with non-elderly patients for a fixed (and in some cases, decreasing) number of hospital beds, this results in much longer waiting times for patients, often with a less satisfactory hospital experience. However, if a better understanding of the recurring nature of elderly patient movements between the community and hospital can be developed, then it may be possible for alternative provisions of care in the community to be put in place and thus prevent readmission to hospital. The research in this paper aims to model the multiple patient transitions between hospital and community by utilising a mixture of conditional Coxian phase-type distributions that incorporates Bayes' theorem. For the purpose of demonstration, the results of a simulation study are presented and the model is applied to hospital readmission data from the Lombardy region of Italy.

The views of general practitioners on advance care planning for patients living with dementia

Background Advance care planning (ACP) facilitates communication
and understanding of preferences, nevertheless the use of
ACPs in primary care for patients with dementia is low. The disease’s
uncertain course and the inability to communicate with
the patient living with dementia are significant challenges for
GPs.
Aim The purpose of this study was to describe the attitudes and
practice preferences of GPs working within the UK’s National
Health System (NHS) regarding communication, and decisionmaking
for patients with dementia and their families
Methods A cross-sectional survey, using a purposive, cluster sample
of GPs across Northern Ireland with registered dementia
patients was used.
Results One hundred and thirty-three GPs (40.6%) participated
in the survey, representing 60.9% of surveyed practices. While
most respondents regarded dementia as a terminal disease
(96.2%) only 37.6% felt that palliative care applied equally from
the time of diagnosis to severe dementia. While most respondents
thought that early discussions would facilitate decision-making
during advanced dementia (61%), respondents were divided
on whether ACP should be initiated at the time of diagnoses
(39.8% in favour vs 45.8% disagreed). Interestingly, GPs who
were longer in practice placed greater importance on the presence
of an advance directive (F (2, 124) = 3.38, p = 0.037).
Discussion The timing of initiating ACP varies across individuals
requiring GPs to carefully consider strategies and receptiveness
of the patient and family carer.
Conclusion The findings promote both ongoing training in communication
and dementia management for GPs to meet the
needs of their patients living with dementia.

Developing an information booklet to meet the needs of intensive care patients and relatives

Changes in the economic climate and the delivery of health care require that pre-operative information programmes are effective and efficiently implemented. In order to be effective the pre-operative programme must meet the information needs of intensive care unit (ICU) patients and their relatives. Efficiency can be achieved through a structured pre-operative programme which provides a framework for teaching. The need to develop an ICU information booklet in a large teaching hospital in Northern Ireland has become essential to provide relevant information and improve the quality of service for patients and relatives, as set out in the White Paper, ‘Working for Patients’, (DoH, 1989). The first step in establishing a patient education programme was to ascertain patients' and relatives' informational needs. A ‘needs assessment’ identified the pre-operative information needs of ICU patients and their relatives (McGaughey, 1994) and the findings were used to plan and publish an information booklet. The ICU booklet provides a structure for pre-operative visits to ensure that patients and relatives information needs are met.

Managing patient deterioration: evaluation of what works.

Background: Rapid Response Systems (RRS) have been implemented nationally and internationally to improve patient safety in hospital. However, to date the majority of the RRS research evidence has focused on measuring the effectiveness of the intervention on patient outcomes. To evaluate RRS it has been recommended that a multimodal approach is required to address the broad range of process and outcome measures required to determine the effectiveness of the RRS concept. Aim: The aim of this paper is to evaluate the official RRS programme theoretical assumptions regarding how the programme is meant to work against actual practice in order to determine what works. Methods: The research design was a multiple case study approach of four wards in two hospitals in Northern Ireland. It followed the principles of realist evaluation research which allowed empirical data to be gathered to test and refine RRS programme theory [1]. This approach used a variety of mixed methods to test the programme theories including individual and focus group interviews with a purposive sample of 75 nurses and doctors, observation of ward practices and documentary analysis. The findings from the case studies were analysed and compared within and across cases to identify what works for whom and in what circumstances. Results: The RRS programme theories were critically evaluated and compared with study findings to develop a mid-range theory to explain what works, for whom in what circumstances. The findings of what works suggests that clinical experience, established working relationships, flexible implementation of protocols, ongoing experiential learning, empowerment and pre-emptive management are key to the success of RRS implementation.  Conclusion:These findings highlight the combination of factors that can improve the implementation of RRS and in light of this evidence several recommendations are made to provide policymakers with guidance and direction for their success and sustainability.References: 1.Pawson R and Tilley N. (1997) Realistic Evaluation. Sage Publications; LondonType of submission: Concurrent session Source of funding: Sandra Ryan Fellowship funded by the School of Nursing & Midwifery, Queen’s University of Belfast

Realist synthesis: Critical care rapid response systems.

Background Rapid Response Systems (RRS) consist of four interrelated and interdependent components; an event detection and trigger mechanism, a response strategy, a governance structure and process improvement system. These multiple components of the RRS pose problems in evaluation as the intervention is complex and cannot be evaluated using a traditional systematic review. Complex interventions in healthcare aimed at changing service delivery and related behaviour of health professionals require a different approach to summarising the evidence. Realist synthesis is such an approach to reviewing research evidence on complex interventions to provide an explanatory analysis of how and why an intervention works or doesn’t work in practice. The core principle is to make explicit the underlying assumptions about how an intervention is suppose to work (ie programme theory) and then use this theory to guide evaluation. Methods A realist synthesis process was used to explain those factors that enable or constrain the success of RRS programmes. Results The findings from the review include the articulation of the RRS programme theories, evaluation of whether these theories are supported or refuted by the research evidence and an evaluation of evidence to explain the underlying reasons why RRS works or doesn’t work in practice. Rival conjectured RRS programme theories were identified to explain the constraining factors regarding implementation of RRS in practice. These programme theories are presented using a logic model to highlight all the components which impact or influence the delivery of RRS programmes in the practice setting. The evidence from the realist synthesis provided the foundation for the development of hypothesis to test and refine the theories in the subsequent stages of the Realist Evaluation PhD study [1]. This information will be useful in providing evidence and direction for strategic and service planning of acute care to improve patient safety in hospital. References: McGaughey J, Blackwood B, O’Halloran P, Trinder T. J. & Porter S. (2010) Realistic Evaluation of Early Warning Systems and the Acute Life-threatening Events – Recognition and Treatment training course for early recognition and management of deteriorating ward-based patients: research protocol. Journal of Advanced Nursing 66 (4), 923-932.

A realistic evaluation of track and trigger systems and acute care training for early recognition and treatment of deteriorating ward-based patients: research protocol.

Aim The aim of the study is to evaluate factors that enable or constrain the implementation and service delivery of early warnings systems or acute care training in practice. Background To date there is limited evidence to support the effectiveness of acute care initiatives (early warning systems, acute care training, outreach) in reducing the number of adverse events (cardiac arrest, death, unanticipated Intensive Care admission) through increased recognition and management of deteriorating ward based patients in hospital [1-3]. The reasons posited are that previous research primarily focused on measuring patient outcomes following the implementation of an intervention or programme without considering the social factors (the organisation, the people, external influences) which may have affected the process of implementation and hence measured end-points. Further research which considers the social processes is required in order to understand why a programme works, or does not work, in particular circumstances [4]. Method The design is a multiple case study approach of four general wards in two acute hospitals where Early Warning Systems (EWS) and Acute Life-threatening Events Recognition and Treatment (ALERT) course have been implemented. Various methods are being used to collect data about individual capacities, interpersonal relationships and institutional balance and infrastructures in order to understand the intended and unintended process outcomes of implementing EWS and ALERT in practice. This information will be gathered from individual and focus group interviews with key participants (ALERT facilitators, nursing and medical ALERT instructors, ward managers, doctors, ward nurses and health care assistants from each hospital); non-participant observation of ward organisation and structure; audit of patients' EWS charts and audit of the medical notes of patients who deteriorated during the study period to ascertain whether ALERT principles were followed. Discussion & progress to date This study commenced in January 2007. Ethical approval has been granted and data collection is ongoing with interviews being conducted with key stakeholders. The findings from this study will provide evidence for policy-makers to make informed decisions regarding the direction for strategic and service planning of acute care services to improve the level of care provided to acutely ill patients in hospital. References 1. Esmonde L, McDonnell A, Ball C, Waskett C, Morgan R, Rashidain A et al. Investigating the effectiveness of Critical Care Outreach Services: A systematic review. Intensive Care Medicine 2006; 32: 1713-1721 2. McGaughey J, Alderdice F, Fowler R, Kapila A, Mayhew A, Moutray M. Outreach and Early Warning Systems for the prevention of Intensive Care admission and death of critically ill patients on general hospital wards. Cochrane Database of Systematic Reviews 2007, Issue 3. www.thecochranelibrary.com 3. Winters BD, Pham JC, Hunt EA, Guallar E, Berenholtz S, Pronovost PJ (2007) Rapid Response Systems: A systematic review. Critical Care Medicine 2007; 35 (5): 1238-43 4. Pawson R and Tilley N. Realistic Evaluation. London; Sage: 1997

The Effect of Community-Based Specialist Palliative Care Teams on Place of Care

BACKGROUND: Prior research on community-based specialist palliative care teams used outcome measures of place of death and/or dichotomous outcome measures of acute care use in the last two weeks of life. However, existing research seldom measured the diverse places of care used and their timing prior to death.

OBJECTIVE: The study objective was to examine the place of care in the last 30 days of life.

METHODS: In this retrospective cohort study, patients who received care from a specialist palliative care team (exposed) were matched by propensity score to patients who received usual care in the community (unexposed) in Ontario, Canada. Measured was the percentage of patients in each place of care in the last month of life as a proportion of the total cohort.

RESULTS: After matching, 3109 patients were identified in each group, where 79% had cancer and 77% received end-of-life home care. At 30 days compared to 7 days before death, the exposed group's proportions rose from 33% to 41% receiving home care and 14% to 15% in hospital, whereas the unexposed group's proportions rose from 28% to 32% receiving home care and 16% to 22% in hospital. Linear trend analysis (proportion over time) showed that the exposed group used significantly more home care services and fewer hospital days (p < 0.001) than the unexposed group. On the last day of life (place of death), the exposed group had 18% die in an in-patient hospital bed compared to 29% in usual care.

CONCLUSION: Examining place of care in the last month can effectively illustrate the service use trajectory over time.

Establishing the Evidence Bar for Molecular Diagnostics in Personalised Cancer Care

While personalised cancer medicine holds great promise, targeting therapies to the biological characteristics of patients is limited by the number of validated biomarkers currently available. The implementation of biomarkers has undergone many challenges with few biomarkers reaching cancer patients in the clinic. There have been many biomarkers that have been published and claimed to be therapeutically useful, but few become part of the clinical decision-making process due to technical, validation and market access issues. To reduce this attrition rate, there is a significant need for policy makers and reimbursement agencies to define specific evidence requirements for the introduction of biomarkers into clinical practice. Once these requirements are more clearly defined, in an analogous manner to pharmaceuticals, researchers and diagnostic companies can better focus their biomarker research and development on meeting these specific requirements, which should lead to the more rapid introduction of new molecular oncology tests for patient benefit.

Use of eye care services among diabetic patients in urban and rural China.

OBJECTIVE: To assess the use of eye care and its predictors among diabetic patients in China. DESIGN: Cross-sectional, clinic-based study. PARTICIPANTS: Diabetic patients 18 years of age or older were recruited consecutively from an urban tertiary and community hospitals and from a rural clinic in Guangdong, China. METHODS: Information obtained by questionnaire and chart review included: demographic and socioeconomic status, knowledge about diabetic retinopathy (DR), and ocular and medical history. MAIN OUTCOME MEASURES: Self-reported or chart history of an eye examination ever or within the preceding 12 months. RESULTS: The participation rate among 889 eligible subjects was 92.7%. Among 824 participants (mean age, 62.6+/-12.9 years; 58.8% female), 550 (66.7%) had not been examined in the last year as recommended by the American Academy of Ophthalmology, and 356 (43.2%) had never been examined. For the rural hospital, these figures were 81.1% and 68.7%, respectively. In regression analyses, factors associated with having an eye examination in the last year were: attendance at urban hospitals (odds ratio [OR], 3.46 [P<0.001] and 1.76 [P = 0.021] for the tertiary and community hospitals, respectively, compared with the rural clinic), higher DR knowledge score (OR, 1.24; P = 0.001), greater concern about vision loss (OR, 1.22; P = 0.007), and recommendation of regular eye examinations by the provider (OR, 2.36; P = 0.011). Predictors of ever having an eye examination were similar. Monthly income and health insurance status were not predictive of being examined. CONCLUSIONS: These results suggest that the low proportion of diabetic receiving recommended annual eye examinations in China may be improved through patient and physician education. Copyright © 2010 American Academy of Ophthalmology. Published by Elsevier Inc. All rights reserved.

Use of eye care services among diabetic patients in urban Indonesia.

OBJECTIVES:

To assess the use of eye care and its predictors among diabetic patients in Indonesia.

METHODS:

Diabetic patients aged 18 years and older were recruited consecutively from a university clinic and 2 community clinics in Jakarta, Indonesia. Information obtained by questionnaire and record review included demographic and socioeconomic status, knowledge about diabetic retinopathy, and ocular and medical history. The main outcome was self-reported or record history of an eye examination by an eye care professional with dilation of the pupil within the preceding year.

RESULTS:

Among 196 participants (mean [SD] age, 58.4 [9.4] years; 61.5% female), 166 (84.7%) had not undergone ocular examination in the last year, including 100 of 119 patients (84.0%) at the university clinic. Fewer than half (82 of 166 [49.4%]) of all patients reported being told of the need for eye examinations by their physician. In regression analyses, factors associated with having an eye examination were higher diabetic retinopathy knowledge score (odds ratio = 1.52; P = .01) and years since being diagnosed as having diabetes (odds ratio = 1.71 for third vs first tertile; P = .02). Education, income, health insurance status, and diagnosis of diabetic retinopathy were not predictive of examination. The most common reasons given by subjects for not having had eye examinations concerned lack of knowledge about the need for care (97 of 160 subjects [60.6%]), while financial barriers were cited by only 22 of 160 subjects (13.8%).

CONCLUSION:

The low proportion of diabetic subjects receiving recommended annual eye examinations in Indonesia might be improved through patient and physician education.

Dedicated severe asthma services improve health-care use and quality of life

Background: Systematic assessment of severe asthma can be used to confirm the diagnosis, identify comorbidities, and address adherence to therapy. However, the prospective usefulness of this approach is yet to be established. The objective of this study was to determine whether the systematic assessment of severe asthma is associated with improved quality of life (QoL) and health-care use and, using prospective data collection, to compare relevant outcomes in patients referred with severe asthma to specialist centers across the United Kingdom. Methods: Data from the National Registry for dedicated UK Difficult Asthma Services were used to compare patient demographics, disease characteristics, and health-care use between initial assessment and a median follow-up of 286 days. Results: The study population consisted of 346 patients with severe asthma. At follow-up, there were significant reductions in health-care use in terms of primary care or ED visits (66.4% vs 87.8%, P < .0001) and hospital admissions (38% vs 48%, P = .0004). Although no difference was noted in terms of those requiring maintenance oral corticosteroids, there was a reduction in steroid dose (10 mg [8-20 mg] vs 15 mg [10-20 mg], P = .003), and fewer subjects required short-burst steroids (77.4% vs 90.8%, P = .01). Significant improvements were seen in QoL and control using the Asthma Quality of Life Questionnaire and the Asthma Control Questionnaire. Conclusions: To our knowledge, this is the first time that a prospective study has shown that a systematic assessment at a dedicated severe asthma center is associated with improved QoL and asthma control and a reduction in health-care use and oral steroid burden.