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Background: The experience sampling method (ESM), a self-report method that typically uses multiple assessments per day, can provide detailed knowledge of the daily experiences of people with cancer, potentially informing oncological care. The use of the ESM among people with advanced cancer is limited, and no validated ESM questionnaires have been developed specifically for oncology., Objective: This study aims to develop, content validate, and optimize the digital Experience Sampling Method for People Living With Advanced Cancer (ESM-AC) questionnaire, covering multidimensional domains and contextual factors., Methods: A 3-round mixed methods study was designed in accordance with the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) and the European Organization for Research and Treatment of Cancer guidelines. The study included semistructured interviews with 43 people with stage IV breast cancer or stage III to IV lung cancer and 8 health care professionals. Round 1 assessed the appropriateness, relative importance, relevance, and comprehensiveness of an initial set of ESM items that were developed based on the existing questionnaires. Round 2 tested the comprehensibility of ESM items. Round 3 tested the usability of the digital ESM-AC questionnaire using the m-Path app. Analyses included descriptive statistics and qualitative content analysis., Results: Following the first round, we developed an initial core set of 68 items (to be used with all patients) and a supplementary set (optional; patients select items), both covering physical, psychological, social, spiritual-existential, and global well-being domains and concurrent contexts in which experiences occur. We categorized items to be assessed multiple times per day as momentary items (eg, "At this moment, I feel tired"), once a day in the morning as morning items (eg, "Last night, I slept well"), or once a day in the evening as evening items (eg, "Today, I felt hopeful"). We used participants' evaluations to optimize the questionnaire items, the digital app, and its onboarding manual. This resulted in the ESM-AC questionnaire, which comprised a digital core questionnaire containing 31 momentary items, 2 morning items, and 7 evening items and a supplementary set containing 39 items. Participants largely rated the digital questionnaire as "easy to use," with an average score of 4.5 (SD 0.5) on a scale from 1 ("completely disagree") to 5 ("completely agree")., Conclusions: We developed the ESM-AC questionnaire, a content-validated digital questionnaire for people with advanced breast or lung cancer. It showed good usability when administered on smartphone devices. Future research should evaluate the potential of this ESM tool to uncover daily experiences of people with advanced breast or lung cancer, explore its clinical utility, and extend its validation to other populations with advanced diseases., (©Joran Geeraerts, Lara Pivodic, Lise Rosquin, Eline Naert, Geert Crombez, Mark De Ridder, Lieve Van den Block. Originally published in JMIR Cancer (https://cancer.jmir.org), 05.11.2024.)

Background: Navigation interventions could support, educate and empower older people with cancer and/or their family caregivers by addressing barriers and ensuring timely access to needed services and resources throughout the continuum of supportive, palliative and end-of-life care., Objectives: European Union (EU) NAVIGATE is an interdisciplinary and cross-country Horizon Europe-funded project (2022-2027) aiming to evaluate the effectiveness, cost-effectiveness and implementation of a navigation intervention for older people with cancer and their family caregivers in Europe. EU NAVIGATE aims to advance the evidence on cancer patient navigation in Europe., Design: Adaptation, implementation and evaluation of a navigation intervention with an international pragmatic randomized controlled trial (RCT) and embedded mixed-method process evaluation at its core. A logic model guides dissemination and impact-generating strategies. EU NAVIGATE involves six experienced EU academic partners; one EU national cancer league with their affiliated academic partner; three EU dissemination partners; and a Canadian partner., Methods: We adapted the Canadian Navigation: Connecting, Advocating, Resourcing, and Engaging (Nav-CARE © ) volunteer programme to healthcare contexts in Belgium, Ireland, Italy, the Netherlands, Poland and Portugal following the new ADAPT guidance. Nav-CARE was developed over the past 15 years and supports people with declining health and their families to improve their quality of life and well-being, foster empowerment and facilitate timely and equitable access to healthcare and social services. In EU NAVIGATE, the navigation intervention is being provided by trained and mentored social workers in Poland and by trained and mentored volunteers in the other five countries. Via a pragmatic RCT with process evaluation, we implement and evaluate the navigation intervention to study its impact on older people with cancer and their family caregivers. We also aim to understand its cost-effectiveness, how to optimally implement it in different countries, and its differential effects in patient subgroups. We will also map existing cancer navigation interventions in Europe, the United States and Canada to position EU NAVIGATE within the field of navigation interventions worldwide., Conclusion: EU NAVIGATE aims to deliver high-quality evidence on a navigation intervention for older people with cancer in Europe and to develop practice and policy recommendations for sustainable implementation of navigation interventions in Europe and beyond., Competing Interests: The authors declare that there is no conflict of interest., (© The Author(s) 2024.)

Background: We developed the ACP+ intervention to support nursing home staff with implementation of advance care planning. While ACP+ was found to improve staff's self-efficacy, it did not change their knowledge about advance care planning., Aim: To describe the level of implementation, mechanisms of impact, and contextual factors., Design: Process evaluation embedded in a cluster randomized controlled trial in nursing homes (NCT03521206). Throughout and immediately following the 8-month ACP+ implementation, we collected weekly diaries, post-training surveys, attendance records, facility data, and conducted interviews ( n  = 32). We applied descriptive statistics and thematic analysis., Setting and Participants: Management, staff, and ACP+ trainers in seven intervention homes., Results: Although most participants reported they valued ACP+, 33% of eligible staff across nursing homes attended training (range: 6%-69%) and only a few reported they felt ready to engage in actual care planning conversations. Half of all nursing homes adapted parts of the intervention (e.g., more/fewer/shortened training; assigning a coordinating role for practical management). Enough time to consolidate skills, and management support were key for staff engagement in advance care planning, and limited time and staff shortages were significant barriers. Staff reported increased awareness of the importance of advance care planning and felt there was a more systematic way of organizing advance care planning., Conclusions: There was limited staff engagement. Management ownership, clear roles, and collaborative practices may enhance nursing home advance care planning. Accessible and ongoing training for all staff, and ample practical learning opportunities are needed.

Objective: This study aimed to evaluate a theory-based website to support people with dementia and their families in the advance care planning (ACP) process., Methods: We conducted an eight-week evaluation study with a convergent parallel mixed-methods design involving people with mild to moderate dementia and their family caregivers who used the website at their convenience. Interviews were conducted at baseline and after 8 weeks to evaluate usability, acceptability, feasibility, experiences, and effects on ACP knowledge, attitudes, perceived barriers to engaging in ACP, self-efficacy and skills to engage in ACP., Results: We included 52 participants (21 people with dementia and 31 family caregivers). In the interviews, all participants considered the website useful and valued the ACP content. Morever, participants reported that family caregivers mostly used the website alone or with the person with dementia. Participants' ACP knowledge, self-efficacy, and skills improved after 8 weeks compared the beginning of the study., Conclusion: The website may be an ideal introduction for those wanting to start ACP, providing user-friendly content and features for initiating and exploring ACP., Practical Implications: ACP in dementia requires a tailored approach. Extra support is crucial for website adoption, emphasising the role of family caregivers while respecting individuals' autonomy., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Introduction: There 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., Objective: To 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., Methods: We 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., Results: A 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., Conclusion: Usability 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., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Background: People with dementia and their family caregivers often encounter challenges in engaging in advance care planning (ACP), such as a lack of information and difficulties in engaging in ACP conversations. Using a user-centred design, we developed two interactive web-based tools as part of an ACP support website to stimulate ACP reflection and communication: (1) the 'Thinking Now About Later' tool, with open-ended questions about 'what matters most', and (2) a digital version of the 'Life Wishes Cards', a card tool with pre-formulated statements that prompt reflection about wishes for future care. This study aimed to evaluate the use of and experiences with two web-based tools by people with dementia and their family caregivers., Methods: During an eight-week period, people with dementia and family caregivers were invited to use the ACP support website in the way they preferred. The mixed-methods evaluation of the ACP tools involved capturing log data to assess website use and semi-structured qualitative interviews to capture experiences. Analyses included descriptive statistics of log data and framework analysis for qualitative data., Results: Of 52 participants, 21 people had dementia and 31 were family caregivers. The 'Thinking Now About Later' tool and 'Life Wishes Cards' were accessed 136 and 91 times respectively, with an average session duration of 14 minutes (SD = 27.45 minutes). 22 participants actively engaged with the tools, with the majority using the tools once, and seven revisiting them. Those who used the tools valued the guidance it provided for ACP conversations between people with dementia and their family caregivers. Participants reported that people with dementia experienced barriers to using the tools on their own, hence family caregivers usually facilitated the use and participation of people with dementia. Some highlighted not knowing what next steps to take after completing the tools online., Conclusions: Although less than half the people used the ACP tools, those who used them found them helpful to facilitate communication between people with dementia and their family. Family caregivers of people with dementia played a crucial role in facilitating the use of the web-based tools., (© 2024. The Author(s).)

Background: Intensive longitudinal methods offer a powerful tool for capturing daily experiences of individuals. However, its feasibility, effectiveness, and optimal methodological approaches for studying or monitoring experiences of oncology patients remain uncertain., Objective: This scoping review aims to describe to what extent intensive longitudinal methods with daily electronic assessments have been used among patients with breast or lung cancer and with which methodologies, associated outcomes, and influencing factors., Methods: We searched the electronic databases (PubMed, Embase, and PsycINFO) up to January 2024 and included studies reporting on the use of these methods among adults with breast or lung cancer. Data were extracted on population characteristics, intensive monitoring methodologies used, study findings, and factors influencing the implementation of these methods in research and clinical practice., Results: We identified 1311 articles and included 52 articles reporting on 41 studies. Study aims and intensive monitoring methodologies varied widely, but most studies focused on measuring physical and psychological symptom constructs, such as pain, anxiety, or depression. Compliance and attrition rates seemed acceptable for most studies, although complete methodological reporting was often lacking. Few studies specifically examined these methods among patients with advanced cancer. Factors influencing implementation were linked to both patient (eg, confidence with intensive monitoring system) and methodology (eg, option to use personal devices)., Conclusions: Intensive longitudinal methods with daily electronic assessments hold promise to provide unique insights into the daily lives of patients with cancer. Intensive longitudinal methods may be feasible among people with breast or lung cancer. Our findings encourage further research to determine optimal conditions for intensive monitoring, specifically in more advanced disease stages., (©Joran Geeraerts, Kim de Nooijer, Lara Pivodic, Mark De Ridder, Lieve Van den Block. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 12.06.2024.)

Background: Social connection is a key determinant of health, but its role in shaping end-of-life outcomes is poorly understood. We examined changes in structure, function, and quality components of social connection in older people's last years of life, and the extent to which social connection predicts end-of-life outcomes (ie, symptoms, health-care utilisation, and place of death)., Methods: This study used longitudinal data of representative samples from across 18 European countries and Israel in the Survey of Health, Ageing, and Retirement in Europe (SHARE), the largest European cohort study of people aged 50 years or older. We included deceased participants of waves 4 and 6 (which contained social network modules) for whom a proxy provided an end-of-life interview. We did paired sample t-tests (for continuous variables), Wilcoxon signed-rank tests (for ordinal variables), and McNemar's tests (for non-ordinal categorical variables) to assess changes in structure, function, and quality components of social connection between waves 4 and 6. To examine social connection as a predictor of end-of-life outcomes, we used social connection data from wave 6 core interviews and end-of-life interviews from wave 7, conducted with a proxy respondent covering the deceased participant's last year of life. End-of-life outcomes included symptoms (pain, breathlessness, and anxiety or sadness) in the last month of life, health-care utilisation in the last year of life, and place of death. We conducted a mixed-effects logistic regression analysis per social connection measure, for each end-of-life outcome., Findings: Data were collected in 2011-12 for wave 4, 2015-16 for wave 6, and 2017-18 for wave 7. We studied 3356 individuals (mean age at death was 79·7 years [SD 10·2]), with interviews conducted, on average, 4·6 (1·2) years (wave 4) and 1·1 (0·7) years (wave 6) before death. From wave 4 to wave 6, the following changes in social connection were observed: proportion of married or partnered participants (from 1406 [60·9%] of 2310 to 1438 [57·1%] of 2518; p<0·0001), receiving personal care or practical help (from 781 [37·2%] of 2099 to 1334 [53·1%] of 2512; p<0·0001), loneliness (from mean 1·4 [SD 0·5] to 1·5 [0·6]; p<0·0001; scale 1-3), satisfaction with social network (from 8·8 [1·67] to 8·7 [1·7]; p=0·037; scale 0-10), and emotional closeness to social network (eg, from 1883 [88·8%] of 2121 to 1710 [91·3%] of 1872 participants who indicated being either very close or extremely close to social network members; p<0·0001). Higher levels of loneliness at wave 6 predicted a greater likelihood of experiencing symptoms in the last month of life (odds ratio range across symptoms: 1·29 [95% CI 1·08-1·55] to 1·58 [1·32-1·89]). Being married (1·32 [1·03-1·68]) or receiving personal care or practical help (1·25 [1·04-1·49]) predicted death in hospital., Interpretation: Social connection undergoes multifaceted changes towards older people's end of life, countering prevalent ideas of generally declining social trajectories. Loneliness in the final months of life might be a risk factor for end-of-life symptoms. Further research is needed to substantiate a causal relationship and to identify underpinning mechanisms, which could inform screening and prevention measures., Funding: Research Foundation-Flanders and European Union., Competing Interests: Declaration of interests LP and LVdB received research funding payments to their institutions from Research Foundation-Flanders. LP received research funding payments to their institution from the European Research Council. LVdB received research funding payments to their institution from the Francqui Foundation. FP declares no competing interests., (Copyright © 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Introduction: People with advanced cancer can experience a wide range of multidimensional symptoms or concerns, but little is known about when and how these fluctuate in daily life. Experience sampling methods (ESMs) involve repeated self-reports in people's natural contexts aimed at uncovering everyday life experiences. ESM has limited recall bias and good ecological validity but might be burdensome to patients. This study aims to pretest and evaluate the feasibility and clinical utility of a validated ESM and use it to explore everyday experiences of people living with advanced breast or lung cancer., Methods and Analysis: In step 1, we will optimise our ESM method by pretesting it through usability interviews and a pilot ESM study. In step 2, we will evaluate and use the ESM method through an observational ESM study to investigate the daily experiences of people with advanced breast or lung cancer. Step 2 also includes interviews with healthcare professionals to determine the clinical utility of ESM in oncology. Participants will complete a digital questionnaire ten times per day, measuring momentary experiences in the physical, psychological, social, spiritual-existential domains and context. Multilevel regression models will analyse fluctuations and temporal relations among measured experiences and context. Analyses also include evaluation of compliance and participation rates. We will apply content analysis to the usability interviews and follow-up interviews of the pilot ESM study., Ethics and Dissemination: We obtained approval from the ethics committees of the University Hospitals of Brussels (BUN: 1432023000043) and Ghent (ONZ-2023-0136). Results will be published in open-access, peer-reviewed journals and presented at conferences. If ESM appears feasible in this population, it could offer new insights into the daily experiences and help optimise support for people with advanced cancer., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia., Aim: To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition., Design: An in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis., Setting/participants: We included 12 people with dementia and 9 supporters., Results: Participants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia., Conclusions: The perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Advance care planning (ACP) is a process that enables individuals to define goals and preferences for their future care. It is particularly relevant for people with dementia and their family. Interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the ACP process. However, considering the specific needs of people with dementia, it is important to develop adapted tools for this population. This study was conducted to define the content of an interactive website for people with dementia and their family caregivers to support them in ACP and to assess the barriers and facilitators for potential users in finding and using such a website from the perspective of family caregivers and healthcare professionals., Methods: Online focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, using a semi-structured topic guide. To analyse the data, we used thematic framework analysis with a combination of deductive and inductive approaches to coding., Results: We conducted 4 focus groups with family caregivers of people with dementia (n = 18) and 3 with healthcare professionals (n = 17). Regarding the content of the website, participants highlighted that information on ACP (what and why) and guidance on how to start talking about ACP throughout the dementia trajectory should be included on the website. To increase the usability of the website, most participants considered a text-to-speech and a print option as important functionalities. A lack of computer literacy was found to be the most significant barrier to finding and using the website., Conclusion: A website for people with dementia and their family caregivers to support them in ACP should focus on comprehensive content on ACP, peer testimonials, and interactive communication tools. Moreover, there should be certain flexibility in navigating through the website so people with dementia and their family caregivers can use it at their own pace. As the next step, we will include people with dementia in developing the website., (© 2023. The Author(s).)

Objective: To gain insight into the advance care planning (ACP) content provided on dementia associations' websites in Europe., Methods: We conducted a content analysis of dementia associations' websites in Europe regarding ACP information, using deductive and inductive approaches and a reference framework derived from two ACP definitions., Results: We included 26 dementia associations' websites from 20 countries and one European association, covering 12 languages. Ten websites did not mention ACP. The information on the remaining 16 varied in terms of themes addressed and amount of information. Four explicitly define ACP. Several websites made multiple references to legal frameworks ( n  = 10, 705 excerpts), choosing legal representatives ( n  = 12, 274 excerpts), and care and treatment preferences ( n  = 14, 89 excerpts); while themes such as communication with family ( n  = 9, 67 excerpts) and professionals ( n  = 9, 49 excerpts) or identifying personal values ( n  = 9, 73 excerpts) were mentioned on fewer websites or addressed in fewer excerpts., Conclusion: ACP content is non-existent in 10 out of 26 dementia associations' websites. On those that have ACP content, legal and medical themes were prominent. It would be beneficial to include more comprehensive ACP information stressing the importance of communication with families and professionals, in line with current ACP conceptualisations framing ACP as an iterative communication process, rather than a documentation-focused exercise.

Background: Web-based tools (e.g., websites, apps) for people with dementia and their family caregivers may be useful in supporting advance care planning (ACP). Using a user-centred design approach, we developed an ACP website for people with dementia and their families. This protocol describes how we will test and evaluate the ACP website. Publishing a study protocol can guide others who want to evaluate web-based tools. Moreover, the data collection methods used in this study are very innovative since they aim to involve people living with dementia without overburdening them., Methods: We will conduct an evaluation study of the ACP website in Flanders, Belgium, using a convergent parallel mixed methods pre-post-test design with continuous follow-up. Thirty eligible dyads of people with mild to moderate dementia (both early and late onset) and their family caregivers will use the website in their everyday life for 8 weeks. We will evaluate the usage, usability, acceptability, and feasibility of the website, as well as the experiences of users. Additionally, we evaluate the effects of using the website on ACP readiness, ACP knowledge, attitudes, perceived barriers to engage in ACP, self-efficacy and skills to engage in ACP., Results: Recruitment and data collection is foreseen between end of 2022 and 2023., Conclusion: This evaluation study of an ACP website for people with dementia and their family caregivers will be the first to evaluate how a web-based tool can support people living with dementia and their families in ACP. The strength of this study lies in the combination of interviews, surveys, and ongoing data logging, which provide insights into the use of support tools in people's daily context. We expect that recruiting people with dementia and their families will be difficult so we have set up a thorough strategy to reach the anticipated sample size., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2023.)

Background: Web-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families., Objective: This paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families., Methods: The development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire., Results: This study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023., Conclusions: The methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study., International Registered Report Identifier (irrid): DERR1-10.2196/46935., (©Fanny Monnet, Charlèss Dupont, Tinne Smets, Aline De Vleminck, Chantal Van Audenhove, Lieve Van den Block, Lara Pivodic. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 26.07.2023.)

Background: Little is known about the nature and intensity of palliative care needs of hospitalised older people. We aimed to describe the palliative care symptoms, concerns, and well-being of older people with frailty and complex care needs upon discharge from hospital to home, and to examine the relationship between palliative care symptoms and concerns, and well-being., Methods: Cross-sectional study using baseline survey data of a pilot randomised controlled trial. Hospital staff identified patients (≥ 70 years) about to be discharged home, with a clinical frailty score of 5 to 7 and complex needs based on physician-assessment. Patients completed structured interviews, using the Integrated Palliative Care Outcome Scale (IPOS), ICEpop CAPability measure for supportive care (ICECAP-SCM) and IPOS Views on Care quality of life item. We calculated descriptive statistics., Results: We assessed 37 older people with complex needs (49% women, mean age 84, standard deviation 6.1). Symptoms rated as causing severe problems were weakness (46%) and poor mobility (40%); 75% reported that their family felt anxious at least occasionally. Of the 17 IPOS items, 41% of patients rated five or more symptoms as causing severe problems, while 14% reported that they were not severely affected by any symptom. 87% expressed feeling supported. There was a negative correlation between symptoms (IPOS) and well-being (ICECAP); r = -0.41., Conclusion: We identified a large variety of symptoms experienced by older people identified as having frailty and complex needs upon hospital discharge. Many were severely affected by multiple needs. This population should be considered for palliative care follow-up at home., (© 2022. The Author(s).)

Background: Uptake of advance care planning in routine nursing home care is low. Through extensive literature review, theoretical development, and stakeholder involvement, we developed the ACP+ intervention., Aims: To evaluate the effects of ACP+ on the knowledge and self-efficacy (confidence in own skills) of nursing home care staff concerning advance care planning., Design: Cluster randomized controlled trial, conducted between February 2018 and January 2019 (NCT03521206, clinicaltrials.gov). ACP+ is a multicomponent intervention aimed at training and supporting nursing home staff and management in implementing advance care planning in nursing home practice through a train-the-trainer approach over 8 months. Fourteen nursing homes were randomized using a matched-pairing strategy, seven received ACP+, seven followed usual practice. Analyses (intention-to-treat) involved linear mixed models., Setting/participants: Nursing homes in Flanders (Belgium)., Results: 694 of 1017 care staff (68% response rate) at baseline and 491 of 989 care staff (50%) post-intervention (8 months) returned questionnaires. Post-intervention, care staff's self-efficacy concerning advance care planning was significantly higher in the intervention than in the control group (baseline-adjusted mean difference 0.57; 95% CI 0.20-0.94; p  = 0.003; Cohen's d  = 0.30). Advance care planning knowledge (95% CI 0.95-1.15; p  = 0.339; ratio: 1.04) did not differ significantly between groups., Conclusions: The ACP+ intervention for nursing homes improved care staff's self-efficacy but not their knowledge concerning advance care planning. Considering the comprehensive and multi-component approach used, these effects were smaller than expected. Reasons for this may be related to the chosen follow-up period, outcomes and measurements, or to the intervention itself and its implementation.

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/mruf8b43., (©Charlèss Dupont, Tinne Smets, Fanny Monnet, Lara Pivodic, Aline De Vleminck, Chantal Van Audenhove, Lieve Van den Block. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 20.04.2022.)

Background: Palliative care is advocated for older people with frailty and multimorbidity in the community. However, how to best deliver it is unclear., Aim: To develop and model an intervention of short-term specialized palliative care that is initiated timely based on complex care needs and integrated with primary care for older people with frailty and their family, detailing the intervention components, outcomes and preconditions needed for implementation, using a novel theoretical approach., Design: Observational study informed by the UK MRC guidance for complex interventions integrated with a Theory of Change (i.e. hypothetical causal pathway to impact) approach. We synthesized evidence from a systematic review, semi-structured interviews, group discussions and Theory of Change workshops., Setting: Primary care in Flanders, Belgium., Results: We identified patient and family carer-related long-term outcomes and preconditions to achieve them for example, service providers are willing and able to deliver the intervention. The intervention components included implementation components, for example, training for service providers, and a core component, that is, provision of timely short-term specialized palliative care by a specialized palliative home care nurse. The latter includes: short-term service delivery; collaborative and integrative working within primary care; delivery of holistic needs- and capacity-based care; person-centred and family-focussed; and goal-oriented pro-active care., Conclusions: The Theory of Change approach allowed us to identify multiple intervention components targeting different stakeholders to achieve the desired outcomes. It also facilitated a detailed description of the intervention which aims to increase replicability and effective comparisons with other interventions.

Background: A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well., Objectives: To examine to what extent engagement in advance care planning practices (e.g. conversations, advance directives), knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes., Design: Survey study., Participants/setting: The study involved a purposive sample of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff (e.g. social workers, physical therapists) completed a survey., Ethical Considerations: The study was approved by the University Hospital of Brussels (B.U.N. 143201834759), as part of a cluster randomized controlled trial (clinicaltrials.gov NCT03521206)., Results: One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated (67% response rate). After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations (odds ratio 4; 95% confidence interval 1.73-9.82; p < 0.001) and documented advance care planning (odds ratio 2.67; 95% confidence interval 1.29-5.56; p < 0.001); differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses (estimated mean difference 0.13 (score range 0-1); 95% confidence interval 0.08-0.17; p < 0.001) and allied staff (estimated mean difference 0.07; 95% confidence interval 0.03-0.12; p < 0.001) scoring higher than care assistants. We found no significant differences regarding self-efficacy., Discussion: While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training., Conclusions: Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage.