The effect and process evaluations of the national quality improvement programme for palliative care : the study protocol

Background: The nationwide integration of palliative care best practices into general care settings is challenging but important in improving the quality of palliative care. This is why the Dutch National Quality Improvement Programme for Palliative Care has recently been launched. This four-year programme consists of about 70 implementation trajectories of best practices. A large evaluation study has been set up to evaluate this national programme and separate implementation trajectories. Methods/Design: This paper presents the protocol of the evaluation study consisting of a quantitative effect evaluation and a qualitative process evaluation. The effect evaluation has a pre-test post-test design, with measurements before implementation (month 0) and after implementation (month 9) of a best practice. Patients are eligible if they have a life expectancy of less than six months and/or if they are undergoing palliative treatment and provided they are physically and mentally capable of responding to questionnaires. Bereaved relatives are eligible if they have been involved in the care of a deceased patient who died after a sickbed between six weeks and six months ago. Three types of measurement instruments are used: (1) numerical rating scales for six symptoms (pain, fatigue, breathlessness, obstipation, sadness and anxiety), (2) the Consumer Quality Index Palliative Care - patient version and (3) the version for bereaved relatives. The process evaluation consists of analysing implementation plans and reports of the implementation, and individual and group interviews with healthcare professionals. This will be done nine to eleven months after the start of the implementation of a best practice. Discussion: This mixed-method evaluation study gives more insight into the effects of the total programme and the separate implementation trajectories. However, evaluation of large quality improvement programmes is complicated due to changing, non-controlled environments. Therefore, it is important that an effect evaluation is combined with a process evaluation

The Compassionate Communities Connectors model for end-of-life care : a community and health service partnership in Western Australia

Background: There is an international drive towards increasing provision of community-led models of social and practical support for people living with advanced illness. Aim: This feasibility project aims to develop, implement and evaluate a model of community volunteers, identified as Compassionate Communities Connectors, to support people living with advanced life limiting illnesses/palliative care needs. The aims also include the development and evaluation of a training programme for volunteers and assessment of the feasibility, acceptability and preliminary effectiveness of this model of care. Methods: The approach seeks to map and mobilise people’s personal networks of care through the Connectors enlisting Caring Helpers (community volunteers). Up to 10 Connectors will be trained to work with at least 30 families selected by the palliative care service as requiring support. The primary outcome is the effect of the intervention on social connectedness. Secondary outcomes are the intervention’s effect on unplanned hospital utilisation, caregiver support needs, advance care plans and satisfaction with intervention for patients/carers, volunteers and service providers. Conclusion: It is expected that this intervention will enhance patient, carer and family social, psychological and practical support and reduce the need for dying people to be admitted to a hospital

An eye-tracking study of selective trust development in children with and without autism spectrum disorder

The purpose of this study was to explore whether children with autism display selectivity in social learning. We investigated the processing of word mappings provided by speakers who differed on previously demonstrated accuracy and on potential degree of reliability in three groups of children (children with autism spectrum disorder, children with developmental language disorder, and typically developing children) aged 4–9 years. In Task 1, one speaker consistently misnamed familiar objects and the second speaker consistently gave correct names. In Task 2, both speakers provided correct information but differed on how they could achieve this accuracy. We analyzed how the speakers’ profiles influenced children's decisions to rely on them in order to learn novel words. We also examined how children attended to the speakers’ testimony by tracking their eye movements and comparing children’ gaze distribution across speakers’ faces and objects of their choice. Results show that children rely on associative trait attribution heuristics to selectively learn from accurate speakers. In Task 1, children in all groups preferred the novel object selected by accurate speakers and directly avoided information provided by previously inaccurate speakers, as revealed by the eye-tracking data. In Task 2, where more sophisticated reasoning about speakers’ reliability was required, only children in the typically developing group performed above chance. Nonverbal intelligence score emerged as a predictor of children's preference for more reliable informational sources. In addition, children with autism exhibited reduced attention to speakers’ faces compared with children in the comparison groups

Pilot study to develop and test palliative care quality indicators for nursing homes

An increasingly frail population in nursing homes accentuates the need for high quality care at the end of life and better access to palliative care in this context. Implementation of palliative care and its outcomes can be monitored by using quality indicators. Therefore, we developed a quality indicator set for palliative care in nursing homes and a tailored measurement procedure while using a mixed-methods design. We developed the instrument in three phases: (1) literature search, (2) interviews with experts, and (3) indicator and measurement selection by expert consensus (RAND/UCLA). Second, we pilot tested and evaluated the instrument in nine nursing homes in Flanders, Belgium. After identifying 26 indicators in the literature and expert interviews, 19 of them were selected through expert consensus. Setting-specific themes were advance care planning, autonomy, and communication with family. The quantitative and qualitative analyses showed that the indicators were measurable, had good preliminary face validity and discriminative power, and were considered to be useful in terms of quality monitoring according to the caregivers. The quality indicators can be used in a large implementation study and process evaluation in order to achieve continuous monitoring of the access to palliative care for all of the residents in nursing homes

Missing not at random in end of life care studies : multiple imputation and sensitivity analysis on data from the ACTION study

Background: Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer. Methods: Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between key indicators and on simple correlations. Results: Up to 39% of follow-up data were missing. Results under MAR reflected that missingness was related to poorer health status. Correlations between variables, although very small, changed according to the imputation method, as well as the differences in scores by gender, indicating a certain sensitivity of the results to the violation of the MAR assumption. Conclusions: The findings confirmed the importance of undertaking this kind of analysis in end-of-life care studies

Context, facial expression and prosody in irony processing

While incongruence with the background context is a powerful cue for irony, in spoken conversation ironic utterances often bear non-contextual cues, such as marked tone of voice and/or facial expression. In Experiment 1, we show that ironic prosody and facial expression can be correctly discriminated as such in a categorization task, even though the boundaries between ironic and non-ironic cues are somewhat fuzzy. However, an act-out task (Experiments 2 & 3) reveals that prosody and facial expression are considerably less reliable cues for irony comprehension than contextual incongruence. Reaction time and eye-tracking data indicate that these non-contextual cues entail a trade-off between accuracy and processing speed. These results suggest that interpreters privilege frugal, albeit less reliable pragmatic heuristics over costlier, but more reliable, contextual processing

A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders, Belgium: research protocol

Background: Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue. This article presents the protocol drafted for the 2007 ELD Study in Flanders, Belgium, and outlines how the main aims and challenges of the study (i.e. making reliable incidence estimates of end-of-life decisions, even rare ones, and describing their characteristics; allowing comparability with past ELD studies; guaranteeing strict anonymity given the sensitive nature of the research topic; and attaining a sufficient response rate) are addressed in a post-mortem survey using a representative sample of death certificates. Study design: Reliable incidence estimates are achievable by using large at random samples of death certificates of deceased persons in Flanders (aged one year or older). This entails the cooperation of the appropriate administrative authorities. To further ensure the reliability of the estimates and descriptions, especially of less prevalent end-of-life decisions (e.g. euthanasia), a stratified sample is drawn. A questionnaire is sent out to the certifying physician of each death sampled. The questionnaire, tested thoroughly and avoiding emotionally charged terms is based largely on questions that have been validated in previous national and European ELD studies. Anonymity of both patient and physician is guaranteed through a rigorous procedure, involving a lawyer as intermediary between responding physicians and researchers. To increase response we follow the Total Design Method (TDM) with a maximum of three follow-up mailings. Also, a non-response survey is conducted to gain insight into the reasons for lack of response. Discussion: The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions. There are however also some limitations to the study design

Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial

Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that \u2018maintaining normal life\u2019 and \u2018experiencing meaningful relationships\u2019 were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred \u2018home\u2019 as final place of care. Conclusions: My Preferences forms provide some insights into patients\u2019 perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients