Family carer support in home and hospital : a cross-sectional survey of specialised palliative care

Objectives To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased. Methods A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted. Results Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare. Conclusions Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services

Quality indicators for Palliative Day Services: A modified Delphi study

BACKGROUND: The goal of Palliative Day Services is to provide holistic care that contributes to the quality of life of people with life threatening-illness and their families. Quality indicators provide a means by which to describe, monitor and evaluate the quality of Palliative Day Services provision, and act as a starting point for quality improvement. However, currently, there are no published quality indicators for Palliative Day Services. AIM: To develop and provide the first set of quality indicators that describe and evaluate the quality of Palliative Day Services. DESIGN AND SETTING: A modified Delphi technique was used to combine best available research evidence derived from a systematic scoping review with multi-disciplinary expert appraisal of the appropriateness and feasibility of candidate indicators. The resulting indicators were compiled into ‘toolkit’, and tested in five UK Palliative Day Service settings. RESULTS: A panel of experts independently reviewed evidence summaries for 182 candidate indicators and provided ratings on appropriateness, followed by a panel discussion and further independent ratings of appropriateness, feasibility, and necessity. This exercise resulted in the identification of 30 indicators which were used in practice testing. The final indicator set comprised 7 structural indicators, 21 process indicators, and 2 outcome indicators. CONCLUSIONS: The indicators fulfil a previously unmet need among Palliative Day Service providers by delivering an appropriate and feasible means to assess, review, and communicate the quality of care, and to identify areas for quality improvement

Dying at home in Belgium: a descriptive GP interview study

<p>Abstract</p> <p>Background</p> <p>While increasing attention is being paid to enabling terminal patients to remain at home until death, limited information is available on the circumstances in which people at home actually die. Therefore this study aims to describe patient characteristics, functional and cognitive status and physical and psychological symptom burden in the last three months of life among Belgian patients dying at home, according to their GPs.</p> <p>Methods</p> <p>In 2005, a nationwide and retrospective interview study with GPs took place on people dying at home in Belgium as reported by Sentinel Network of GPs in Belgium. GPs registered all deaths (patients aged 1 year or more) weekly and were interviewed about all patients dying non-suddenly at home, using face-to-face structured interviews.</p> <p>Results</p> <p>Interviews were obtained on 205 patients (90% response rate). Between the second and third month before death, 55% were fully invalid or limited in self-care. In the last week of life, almost all were fully invalid. Fifty four percent were unconscious at some point during the last week; 46% were fully conscious. Most frequently reported symptoms were lack of energy, lack of appetite and feeling drowsy. Conditions most difficult for GPs to manage were shortness of breath, lack of energy and pain.</p> <p>Conclusions</p> <p>Many people dying at home under the care of their GPs in Belgium function relatively well until the last week of life and cognitive status seems to be preserved until the end in many cases. However, symptoms which GPs find difficult to control still manifest in many patients in the final week of life.</p

An Interdisciplinary Procurement Project and Business Case

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De essentiële rol van het vak Nederlands in interdisciplinaire projecten. Zakelijk communiceren in een authentieke leeromgeving

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Quantitative DTI measures

Diffusion tensor imaging (DTI) has revolutionized the visualization of white matter in vivo. However, it is far more than a qualitative tool and can also be used to generate quantitative measures related to diffusion magnitude and its degree of anisotropy, which indirectly reflect microstructural organisation. Although highly sensitive to microstructural change, DTI measures lack specificity and are influenced by a wide range of biological and methodological factors. This makes the interpretation of DTI metric changes extremely challenging. This chapter introduces the most common DTI measures and how they relate to tissue microstructure. Important confounds are addressed, including how DTI metrics are influenced by biological factors such as ageing and pathology, and by methodological factors such as data acquisition, modeling, and analysis

Nationwide evaluation of palliative care (Q-PAC study) provided by specialized palliative care teams using quality indicators : Large variations in quality of care

Background: Although a number of quality indicators for palliative care have been implemented worldwide, evidence regarding the performance of palliative care teams is scarce. Aim: Evaluating the quality of palliative care using quality indicators; to describe the variation in quality between palliative care teams; and to suggest quality benchmarks for these teams. Design: A repeated cross-sectional study design to collect quality indicator data by means of a validated quality indicator set in 36 Belgian palliative care teams at home and in hospitals. Risk-adjustment procedures, taking into account patient-mix, were applied to suggest benchmarks. Participants: Between 2014 and 2017, five quality measurements with questionnaires were conducted in 982 patients receiving palliative care, 4701 care providers and 1039 family members of deceased patients. Results: A total of 7622 assessments were received. Large risk-adjusted variations between the different palliative care teams were identified in: regularly updating patient files (IQR: 12%–39%), having multidisciplinary consultations about care objectives (IQR: 51%–73%), discussing end-of-life care decisions with patients (IQR: 26%–71%–92%), relieving shortness of breath (IQR: 57%–78%), regularly assessing pain (IQR: 43%–74%) and symptoms by means of validated scales (IQR: 23%–60%), initiating palliative care at least 2 weeks before death (IQR: 30%–50%), and weekly contact with the GP in the last 3 months of life (IQR 16%–43%). Conclusion: The large risk-adjusted variation found across the quality indicator scores suggest that repeated and standardized quality improvement evaluations can allow teams to benchmark themselves to each other to identify areas of their palliative care delivery that need improvement. </jats:sec

Systematic quality monitoring for specialized palliative care services : development of a minimal set of quality indicators for palliative care study (QPAC)

Background: A feasibility evaluation of a comprehensive quality indicator set for palliative care identified the need for a minimal selection of these indicators to monitor quality of palliative care services with short questionnaires for the patients, caregivers, and family carers. Objectives: To develop a minimal indicator set for efficient quality assessment in palliative care. Design: A 2 round modified Research ANd Development corporation in collaboration with the University of California at Los Angeles (RAND/UCLA) expert consultation. Setting/Patients: Thirteen experts in palliative care (professionals and patient representatives). Measurements: In a home assignment, experts were asked to score 80 developed indicators for priority to be included in the minimal set on a scale from 0 (lowest priority) to 9 (highest priority). The second round consisted of a plenary meeting in which the minimal set was finalized. Results: Thirty-nine of the 80 indicators were discarded, while 19 were definitely selected after the home assignment, and 22 were proposed for discussion during the meeting; 12 of these survived the selection round. The final minimal indicator set for palliative care consists of 5 indicators about the physical aspects of care; 6 about the psychosocial aspects of care; 13 about information, communication, and care planning; 5 about type of care; and 2 about continuity of care. Conclusion: A minimal set of 31 indicators reflecting all the important issues in palliative care was created for palliative care services to assess the quality of their care in a quick and efficient manner. Additional topic-specific optional modules are available for more thorough assessment of specific aspects of care