Publications
update: July 2013
- Antunes B, Harding R, Higginson IJ, on behalf of EURO IMPACT. Implementing Patient Reported Outcome Measures (PROMs) in Palliative Care clinical practice: a systematic review of facilitators and barriers. Palliative Medicine 2013, DOI:10.1177/0269216313491619
Abstract
Background: Many patient-reported outcome measures have been developed in the past two decades, playing an increasingly important role in palliative care. However, their routine use in practice has been slow and difficult to implement.
Aim: To systematically identify facilitators and barriers to the implementation of patient-reported outcome measures in different palliative care settings for routine practice, and to generate evidence-based recommendations, to inform the implementation process in clinical practice.
Design: Systematic literature review and narrative synthesis.
Data Sources: Medline, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, Embase and British Nursing Index were systematically searched from 1985. Hand searching of reference lists for all included articles and relevant review articles was performed.
Results: A total of 3863 articles were screened. Of these, 31 articles met the inclusion criteria. First, data were integrated in the main themes: facilitators, barriers and lessons learned. Second, each main theme was grouped into either five or six categories. Finally, recommendations for implementation on outcome measures at management, health-care professional and patient levels were generated for three different points in time: preparation, implementation and assessment/improvement.
Conclusions: Successful implementation of patient-reported outcome measures should be tailored by identifying and addressing potential barriers according to setting. Having a coordinator throughout the implementation process seems to be key. Ongoing cognitive and emotional processes of each individual should be taken into consideration during changes. The educational component prior to the implementation is crucial. This could promote ownership and correct use of the measure by clinicians, potentially improving practice and the quality of care provided through patient-reported outcome measure data use in clinical decision-making.
Link to full paper
- Loucka M , Payne S , Brearley S. How to Measure the International Development of Palliative Care? A Critique and Discussion of Current Approaches. Journal of pain and symptom management 2013, doi: 10.1016/j.jpainsymman.2013.02.013
Abstract
CONTEXT: A number of research projects have been conducted that aim to gather data on the international development of palliative care. These data are important for policy makers and palliative care advocates. OBJECTIVES: The aim of this article was to provide a critical comparative analysis of methodological approaches used to assess the development and status of palliative care services and infrastructure at an international level. METHODS: A selective literature review that focused on the methodological features of eight identified reports was undertaken. RESULTS: Reviewed reports were found to differ in adopted methodologies and provided uneven amounts of methodological information. Five major methodological limitations were identified (lack of theory, use of experts as source of information, grey literature, difficulties in ranking, and the problematic nature of data on service provision). A set of recommendations on how to deal with these issues in future research is provided. CONCLUSION: Measuring the international development of palliative care is a difficult and challenging task. The results of this study could be used to improve the validity of future research in this field.
Link to full paper
- Ko W, Beccaro M, Miccinesi G, Van Casteren V, Donker G, Onwuteaka-Philipsen B, Miralles Espi MT, Deliens L, Costantini M, Van den Block L, EUROIMPACT. Awareness of General Practitioners concerning cancer patients' preferences for place of death: Evidence from four European countries. European Journal of Cancer 2013
Abstract
BACKGROUND: General Practitioners (GPs) are at the first level of contact in many European healthcare systems and they supposedly have a role in supporting cancer patients in achieving their desired place of death. A four-country (Belgium, the Netherlands, Italy and Spain) study was carried out exploring current practices. PATIENTS AND METHODS: EURO SENTI-MELC adopted a retrospective study design and data for this study were collected in 2010 through representative GPs' networks in four countries. In the current study all non-sudden cancer deaths were included with weekly GP registrations. RESULTS: The main study sample included 930 deceased cancer patients: preference for place of death was known by GPs for only 377. GP awareness on the preferred place of death varied across countries, 27% in Italy, 36% in Spain, 45% in Belgium and 72% in the Netherlands (p<0.01). The general level of preferences met was high, from 68% (Italy) to 92% (Spain). CONCLUSIONS: Despite the importance of being able to die in a preferred location, GPs were often unaware about patient preferences, especially in Italy and Spain. If GPs were informed, the preference was often met in all countries, indicating room for improvement in end-of-life care.
Link to full paper
- Evans N, Pasman HR, Vega Alonso T, Van den Block L, Miccinesi G, Van Casteren V, Donker G, Bertolissi S, Zurriaga O, Deliens L, Onwuteaka-Philipsen B, on behalf of EUROIMPACT. End-of-Life Decisions: A Cross-National Study of Treatment Preference Discussions and Surrogate Decision-Maker Appointments. Plos ONE 2013; 8 (3)
Abstract
Background Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. This study estimates and compares the prevalence of GP-patient end-of-life treatment discussions and patients’ appointment of surrogate decision-makers in Italy, Spain, Belgium and the Netherlands and examines associated factors.
Methods A cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last three months of life of 4,396 patients who died non-suddenly. Prevalences were estimated and logistic regressions were used to examine between country differences and country-specific associated patient and care factors.
Results GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient discussion of primary diagnosis, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments.
Conclusions The study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern compared to the two southern European countries. Factors associated with preference discussions and surrogate appointments suggest that delaying diagnosis discussions impedes anticipatory planning, whereas early preference discussions, particularly for dementia patients, and the provision of palliative care encourage participation.
Link to full paper
- Evans N, Pasman HR, Payne SA, Seymour J, Pleschberger S, Deschepper R, Onwuteaka-Philipsen B. Older patients' attitudes towards and experiences of patient-physician end-of-life communication: a secondary analysis of interviews from British, Dutch and Belgian patients. BMC Palliative Care 2012; 11(1):24, doi:10.1186/1472-684X-11-24
Abstract
BACKGROUND: Older patients often experience sub-standard communication in the palliative phase of illness. Due to the importance of good communication in patient-centred end-of-life care, it is essential to understand the factors which influence older patients' communication with physicians. This study examines older patients' attitudes towards, and experiences of, patient-physician end-of-life (EoL) communication in three European countries. METHODS: A secondary analysis of interviews from British, Dutch and Belgian patients over the age of 60 with a progressive terminal illness was conducted. Cross-cutting themes were identified using a thematic approach. RESULTS: Themes from 30 interviews (Male n = 20, Median age 78.5) included: confidence and trust; disclosure and awareness; and participation in decision-making. Confidence and trust were reinforced by physicians' availability, time and genuine attention and hindered by misdiagnoses and poor communication style. Most participants preferred full disclosure, though some remained deliberately ill-informed to avoid distress. Patients expressed a variety of preferences for and experiences of involvement in medical EoL decision-making and a few complained that information was only provided about the physician's preferred treatment. CONCLUSIONS: A variety of experiences and attitudes regarding disclosure and participation in decision-making were reported from each country, suggesting that communication preferences are highly individual. It is important that physicians are sensitive to this diversity and avoid stereotyping. In regard to communication style, physicians are advised to provide clear explanations, avoid jargon, and continually check understanding. Both the 'informed' and the 'shared' patient-physician decision-making models assume patients make rational choices based on a clear understanding of treatment options. This idealized situation was often not reflected in patients' experiences.
Link to full paper
- Papavasiliou E, Brearley S, Seymour J, Brown J, Payne S, on behalf of EURO IMPACT. From sedation to continuous sedation until death: How has the conceptual basis of sedation in end of life care changed over time? Journal of Pain and Symptom Management ( 2013 In Press)
Abstract
Context: Numerous attempts have been made to describe and define sedation in end of life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature making interpretation, comparison, and extrapolation of many studies and case analyses problematic. Objectives: This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. Methods: Six electronic databases (MEDLINE, PubMed, EMbase, AMED, CINAHL and PsychINFO) and two high impact journals (NEJM & BMJ) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. Results: The review shows that terminology has evolved from simple to complex terms with definitions varying in length, comprising different aspects of sedation such as indications for use, pharmacology, patient symptomatology, target population, time of initiation, and ethical considerations in combinations of minimum two or more of these aspects. Conclusion: There is a pressing need to resolve the conceptual confusion that currently exists in the literature in order to bring clarity to the dialogue and build a base of commonality on which to design research and enhance practice of sedation in end of life care.
- De Roo M, Leemans K, Claessen S, Cohen J, Pasman R, Deliens L, Francke A, on behalf of EURO IMPACT. Quality Indicators for Palliative Care: update of a systematic review. Accepted for publication in the journal of Pain and Symptom Management
Abstract
Context - In 2007, a systematic review revealed a number of quality indicators, referring mostly to palliative care outcomes and processes. Psychosocial and spiritual aspects were scarcely represented. Most publications lacked a detailed description of the development process. With many initiatives and further developments expected, an update was needed. Objectives – This update gives an overview of published quality indicators for palliative care and identifies any new developments since 2007 regarding the number and type of indicators developed, and the methodology applied. Methods – The same literature search as in the 2007 review was used to identify relevant publications up to October 2011. Publications describing development processes or characteristics of quality indicators for palliative care were selected by two reviewers independently. Results – The literature search gave 435 hits in addition to the 650 hits found in the previous review. Thirteen new publications were selected in addition to the sixteen publications selected earlier, describing seventeen sets of quality indicators and containing 326 indicators. These cover all domains of palliative care as defined by the National Consensus Program. Most indicators refer to care processes or outcomes. The extent to which methodological characteristics are described varies widely. Conclusion – Recent developments in measuring quality of palliative care using quality indicators are mainly quantitative in nature, with a substantial number of new indicators being found. However, quality of the development process varies considerably between sets. More 3 consistent and detailed methodological descriptions are needed for the further development of these indicators and improved quality measurement of palliative care.
- Blum D. Electronic monitoring of symptoms and syndromes associated with cancer: methods of a randomized controlled trial SAKK 95/06 E-MOSAIC. BMC PALL SUPP 2012
Abstract
BACKGROUND: In patients with advanced, incurable cancer, anticancer treatment may be used to alleviate cancer-related symptoms, but monitoring of them in daily practice is rarely done. We aim to test the effectiveness of a real-time symptom and syndrome assessment using the E-MOSAIC software installed in handheld computer generating a longitudinal monitoring sheet (LoMoS) provided to the oncologists in a phase III setting. METHODS: In this prospective multicentre cluster randomized phase-III trial patients with any incurable solid tumor and having defined cancer related symptoms, who receive new outpatient chemotherapy in palliative intention (expected tumor-size response rate [less than or equal to]20%) are eligible. Immediately before the weekly visit to oncologists, all patients complete with nurse assistance the E-MOSAIC Assessment: Edmonton Symptom Assessment Scale, [less than or equal to]3 additional symptoms, estimated nutritional intake, body weight, Karnofsky and medications for pain and cachexia. Experienced oncologists will be randomized to receive the LoMoS or not. To minimize contamination, LoMoS are removed from the medical charts after visits. Primary endpoint is the difference in global quality of life (items 29 & 30 of EORTC-QlQ-C30) between baseline and last study visit at week 6, with a 10 point between-arm difference considered to be clinically relevant. 20 clusters (=oncologists) per treatment arm with 4-8 patients each are aimed for to achieve a significance level of 5% and a power of 80% in a mixed model approach. Selected co- variables are included in the model for adjustment. Secondary endpoints include patient-perceived patient-physician communication symptom burden over time, and oncologists' symptom management performance (predefined thresholds of symptoms compared to oncologists' pharmacological, diagnostic or counselling actions [structured chart review]). DISCUSSION: This trial will contribute to the research question, whether structured, longitudinal monitoring of patients' multidimensional symptoms, indicators for symptom management, and clinical benefit outcomes can influence patients' quality of life and symptom distress, in a setting of routine oncology practice. Trial registration Current Controlled Trials NCT00477919.
Link to full paper
- Blum D, Strasser F. Cachexia assessment tools. Curr Opin Support Palliat Care. 2011 Dec;5(4):350-5. doi: 10.1097/SPC.0b013e32834c4a05
Abstract
PURPOSE OF REVIEW: Cachexia is a common negative consequence of cancer and is often unrecognized. To assess cachexia, malnutrition assessment tools are used. This review discusses the advantages and disadvantages of the current malnutrition assessment tools and describes the requirements for a comprehensive cachexia assessment instrument and its implication for clinics and research. RECENT FINDINGS: The historic definition of cachexia has been updated based on new understanding of mechanism and clinical concepts. Classification of cachectic patients includes novel domains and stages. Validated cachexia assessment tools based on the new classification are under development. SUMMARY: Cachexia has an impact for patients and proxies. Due to a lack of formal cachexia assessment instrument, malnutrition assessment tools are in use. Future comprehensive cachexia assessment instruments will identify cachexia domains and stages and classify cachexia, the basis for better clinical treatment and research.
- Papavasiliou E, Payne S, Brearley S, Brown J and Seymour J (2012) Continuous Sedation (CS) until death: Mapping the literature by bibliometric analysis. Journal of pain and symptom management 2012 Sep 28. pii: S0885-3924(12)00341-7. doi: 10.1016/j.jpainsymman.2012.05.012. Epub 2012 Sep 29
Abstract
Context: Sedation at the end of life, regardless of the nomenclature, is an increasingly debated practice at both a clinical and bioethical level. However, little is known about the characteristics and trends in scientific publications in this field of study. Objectives: This article presents a bibliometric analysis of the scientific publications on continuous sedation until death. Methods: Four electronic databases (MEDLINE, PubMed, EMbase, and PsychINFO) were searched for indexed material published between 1945 and 2011. This search resulted in bibliographic data of 273 published outputs that were analysed using bibliometric techniques. Results: Data revealed a trend of increased scientific publication from the early 1990s. Published outputs, diverse in type (comments/letters, articles, reviews, case reports, editorials), were widely distributed across 94 journals of varying scientific disciplines (medicine, nursing, palliative care, law, ethics). Most journals (72.3%) were classified under Medical and Health Sciences with Journal of Pain and Symptom Management identified as the major journal in the field covering 12.1% of the total publications. Empirical research articles, mostly of a quantitative design, originated from 17 countries. While Japan and the Netherlands were found to be the leaders in research article productivity, it was the UK and the USA that ranked top in terms of the quantity of published outputs. Conclusion: This is the first bibliometric analysis on continuous sedation until death which can be used to inform future studies. Further research is needed to refine controversies on terminology, ethical acceptability of the practice as well as conditions and modalities of its use.