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

Usability of web-based tools designed for communication and decision-making in dementia: systematic review and design brief

IntroductionThere is an increased number of web-based tools designed for people with dementia and their family caregivers and addressing communication and decision-making. The loss of cognitive functions associated with dementia can impact individuals’ experiences and use of web-based tools. There is a need for high quality and user-friendly web-based tools that support communication and decision-making for people with dementia and their family caregivers.ObjectiveTo identify usability requirements, usability testing methods, and design suggestions from studies focusing on web-based tools for communication and decision-making support in dementia care.MethodsWe conducted a systematic review with narrative synthesis. Five databases were systematically searched in February 2023. The quality of the included studies was assessed using the Mixed Methods Appraisal Tool.ResultsA total of 1,032 articles were identified and 7 fulfilled inclusion criteria. Web-based tools addressed technology usage, health promotion, home modification information, shared decision-making facilitation, information needs and social isolation. Methods to test usability included surveys, interviews, focus groups, cognitive walkthroughs and think-aloud procedures. Findings suggested reducing cognitive load, enhancing readability, providing clear language, and emphasising the need for additional support for people with dementia. Design recommendations include optimising information delivery and presentation, enhancing visual elements, streamlining navigation, providing concrete examples, using clear language, and offering training and tailored support.ConclusionUsability requirements ranged from visual appearance and navigation to delivery of content and support needed. This review contributes to efforts to improve design and development of web-based tools targeting communication and decision-making in dementia care. Further research should address tailored support to enhance usability for people with dementia

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

Publicly available, interactive web-based tools to support advance care planning : systematic review

Background: There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature. Objective: This study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of content and investigate whether and how they are evaluated. Methods: We systematically searched the web-based gray literature databases OpenGrey, ClinicalTrials.gov, ProQuest, British Library, Grey Literature in the Netherlands, and Health Services Research Projects in Progress, as well as Google and app stores, and consulted experts using the following eligibility criteria: web-based, designed for the general population, accessible to everyone, interactive (encouraging reflection, communication, and processing of information), and in English or Dutch. The quality of content was evaluated using the Quality Evaluation Scoring Tool (score 0-28—a higher score indicates better quality). To synthesize the characteristics of the ACP tools, readability and quality of content, and whether and how they were evaluated, we used 4 data extraction tables. Results: A total of 30 tools met the eligibility criteria, including 15 (50%) websites, 10 (33%) web-based portals, 3 (10%) apps, and 2 (7%) with a combination of formats. Of the 30 tools, 24 (80%) mentioned a clear aim, including 7 (23%) that supported reflection or communication, 8 (27%) that supported people in making decisions, 7 (23%) that provided support to document decisions, and 2 (7%) that aimed to achieve all these aims. Of the 30 tools, 7 (23%) provided information on the development, all of which were developed in collaboration with health care professionals, and 3 (10%) with end users. Quality scores ranged between 11 and 28, with most of the lower-scoring tools not referring to information sources. Conclusions: A variety of ACP support tools are available on the web, varying in the quality of content. In the future, users should be involved in the development process of ACP support tools, and the content should be substantiated by scientific evidence. Trial Registration: PROSPERO CRD42020184112; https://tinyurl.com/mruf8b4