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

Differences in palliative care quality between patients with cancer, patients with organ failure and frail patients: A study based on measurements with the Consumer Quality Index Palliative Care for bereaved relatives

Background Palliative care is rooted in the care for incurably ill cancer patients. Yet today there is a recognised need for palliative care for patients with non-cancer conditions. However, the often unpredictable illness trajectories and the difficulty in predicting the imminence of death in people with non-cancer conditions may hamper the provision of high-quality palliative care. Aim To compare the quality of palliative care provided to patients with cancer, patients with organ failure and frail patients and their relatives. Design An existing dataset was analysed, consisting of data collected through the Consumer Quality Index Palliative Care questionnaire for bereaved relatives. Setting/participants Data were analysed of 456 relatives of deceased patients with cancer, patients with organ failure and frail patients from various care settings in the Netherlands. Results Relatives (e.g. partners or children) of deceased patients with organ failure (n = 61) were more likely to have negative experiences regarding the expertise of healthcare professionals compared with relatives of patients with cancer (n = 215). Relatives of frail patients (n = 180) gave a relatively low rating of the general quality of the care in the last week of the patient’s life, both as regards the care provided to patients (p = 0.015) and as regards the support to relatives (p = 0.009). Conclusion Compared with the bereaved relatives of patients with cancer, bereaved relatives of patients with organ failure or frailty were more likely to negatively assess the palliative care provided to both the patient and themselves. Improving professionals’ expertise in palliative care for people with non-cancer conditions is recommended. (aut. ref.

Relatives' perceived quality of palliative care: Comparisons between care settings in which patients die

Background: Dying in the preferred setting is an indicator of good palliative care quality. Most people prefer to die at home. But does the quality of care as perceived by their relatives vary depending on the care setting that is the place of death? The aim is to compare (from the relatives perspective) whether there are perceived differences in the quality of palliative care between the settings in which people die. Methods: Multivariate linear regression analyses have been carried out using an existing dataset containing information collected using the relatives' version of the Consumer Quality Index (CQ-index) Palliative Care. The dataset includes 1368 relatives of patients with a wide variety of conditions who died in various locations: at home, in hospital, in residential care for the elderly, a hospice, palliative care unit or in another institution (e.g. institutions for people with intellectual disabilities or mental healthcare institutions). The relatives were the first contacts (family members or other people close to the patient) and they received the survey between 6 weeks and 6 months after the bereavement. Results: Based on the raw data, differences between locations in terms of the perceived quality of care initially appeared inconsistent. The multivariate regression analyses however showed that relatives of people who died at home were generally the most positive about the palliative care that the patient and they themselves received when the patient was dying. The care provided by hospices also received a relatively good rating. In hospitals and in residential settings for care of the elderly, the care was rated less highly by the relatives. Conclusions: The quality of palliative care as experienced from the relatives' perspective is highest when the patient dies at home or in a hospice. This is an argument for letting people die at home, if they so wish, as far as possible and feasible

Which patients die in their preferred place? A secondary analysis of questionnaire data from bereaved relatives

Background: Previous studies on factors influencing the place of death have focused on cancer patients dying at home. However, home is not always the preferred place. Aim: To provide insight into the extent to which patients with various diseases die in their preferred place and into factors associated with dying in the preferred place. Design: A secondary analysis of the data set of the evaluation study of the National Quality Improvement Programme for Palliative Care was undertaken to explore factors related to ‘dying in the preferred place’. Setting/participants: A total of 797 bereaved relatives filled in the Consumer Quality Index Palliative Care, a validated and reliable questionnaire. Results: Two-thirds of the patients died in the preferred place. A preference for dying at home and having had a stroke decreased the likelihood of dying in the preferred place, while having a partner, dementia, contact with the general practitioner in the last week before death, and continuity of care between professionals increased the likelihood of dying in the preferred place. Furthermore, people who wanted to die at home and also had dementia were more likely to die elsewhere than people without dementia who wanted to die at home. Conclusion: Positive associations were found between continuity of care between healthcare professionals and contact with the general practitioner and the chance of people dying in their preferred place. Moreover, special attention for people who have had a stroke and for people with dementia who want to die at home seems indicated as their diagnosis is negatively associated with dying in their preferred place

Evidence on the effectiveness of health literacy interventions in the EU: a systematic review

Background In the last decade, the attention for health literacy has increased in the European Union. This is due to three main reasons. First, reviews have shown that inadequate health literacy is associated with worse health outcomes, higher health care use and expenditure. Second, in all European countries the population is aging and the number of chronically ill people is rising. Improving health literacy in this group can offer greater opportunities to take an active part in society, be independent and improve quality of life. Third, since most research on health literacy has been conducted outside Europe and relatively little is known about the development of health literacy interventions and its effects on outcome measures in European countries. The aim of this systematic review was to assess the evidence on the effectiveness of health literacy interventions in the European Union published between 1995 and 2018. Methods Searches have been performed in Medline, PubMed, EMBASE, CINAHL, Cochrane library, PsychINFO, ERIC, Web of Science and SCOPUS for publications on health literacy intervention studies in European Union countries. Studies were included if the research was conducted in one or more Member States of the European Union, the publication described an intervention study, the intervention was aimed at health literacy, the publication described an outcome measure related to health literacy and the publication was written in English, French or German. Results A total of 23 studies were included. Three types of interventions were identified; aimed at improving health literacy, tailored to different health literacy levels and aimed at improving health outcomes in general that differentiated in effects for people with different health literacy levels. Most interventions identified in the review focus on the functional level of health literacy or numeracy. The strength of evidence from the European health literacy intervention studies was low and there was a huge heterogeneity in study design, measurement tools and outcomes measured. Conclusions Promising interventions were tailored to the needs of patients, addressing functional, interactive and critical skills and use not difficult animated spoken text. Future research should focus on the development and assessment of such interventions and use stronger designs

Evidence on the effectiveness of health literacy interventions in the EU : a systematic review

BACKGROUND: In the last decade, the attention for health literacy has increased in the European Union. This is due to three main reasons. First, reviews have shown that inadequate health literacy is associated with worse health outcomes, higher health care use and expenditure. Second, in all European countries the population is aging and the number of chronically ill people is rising. Improving health literacy in this group can offer greater opportunities to take an active part in society, be independent and improve quality of life. Third, since most research on health literacy has been conducted outside Europe and relatively little is known about the development of health literacy interventions and its effects on outcome measures in European countries. The aim of this systematic review was to assess the evidence on the effectiveness of health literacy interventions in the European Union published between 1995 and 2018. METHODS: Searches have been performed in Medline, PubMed, EMBASE, CINAHL, Cochrane library, PsychINFO, ERIC, Web of Science and SCOPUS for publications on health literacy intervention studies in European Union countries. Studies were included if the research was conducted in one or more Member States of the European Union, the publication described an intervention study, the intervention was aimed at health literacy, the publication described an outcome measure related to health literacy and the publication was written in English, French or German. RESULTS: A total of 23 studies were included. Three types of interventions were identified; aimed at improving health literacy, tailored to different health literacy levels and aimed at improving health outcomes in general that differentiated in effects for people with different health literacy levels. Most interventions identified in the review focus on the functional level of health literacy or numeracy. The strength of evidence from the European health literacy intervention studies was low and there was a huge heterogeneity in study design, measurement tools and outcomes measured. CONCLUSIONS: Promising interventions were tailored to the needs of patients, addressing functional, interactive and critical skills and use not difficult animated spoken text. Future research should focus on the development and assessment of such interventions and use stronger designs