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Objective: Advance care planning (ACP) is a dynamic communication process about future care preferences. We aimed to develop and test an ACP support website for people with dementia and their family caregivers., Methods: We adopted a user-centred design process to develop and test the ACP support website. A content specification phase included needs assessment, evidence synthesis and translation into preliminary content. A creative design phase included storyboarding, iterative prototyping, and usability testing. People with dementia and family caregivers engaged in usability testing across four iterations, using System Usability Scale questionnaires, and think-aloud and semi-structured interviews. An advisory group with people with dementia, family caregivers, and diverse regional stakeholders was involved. Descriptive statistics and qualitative framework analysis were applied., Results: Website goals were: providing ACP information and facilitating ACP conversations. A 'what matters most' approach (i.e. enabling users to reflect on 'what matters most' in the present and the future) and non-linear navigation were favoured. We tested the website with 17 people with dementia and 26 family caregivers. Feedback addressed design, navigation and content. Usability scores of 76.4 for family caregivers and 81.3 for people with dementia were achieved. Family caregivers and people with dementia highlighted the value of information and interactive ACP tools, the need for language simplification and harmonised layout. People with dementia experienced challenges in using interactive tools., Conclusion: The user-centred development process, involving diverse stakeholders, led to the development of an ACP support website deemed usable and useful. Future evaluation should focus on acceptability, feasibility and effectiveness of the ACP support website., 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) 2025.)

Background: Web-based tools have gained popularity to inform and empower individuals in advance care planning. We have developed an interactive website tailored to the unique needs of people with dementia and their families to support advance care planning. This website aims to break away from the rigid pathways shown in other tools that support advance care planning, in which advance care planning is shown as a linear process from information to reflection, communication, and documentation., Objective: This study aimed to assess the website's usage by people with dementia and their family caregivers, identify distinct user engagement patterns, and visualize how users navigated the website., Methods: We analyzed the website's log data obtained from an 8-week evaluation study of the site. Interactions with the website were collected in log data files and included visited web pages or clicked-on hyperlinks. Distinct user engagement patterns were identified using K-means clustering process mining, a technique that extracts insights from log data to model and visualize workflows, was applied to visualize user pathways through the website., Results: A total of 52 participants, 21 individuals with dementia and their family caregivers as dyads and 10 family caregivers were included in the study. Throughout the 8-week study, users spent an average of 35.3 (SD 82.9) minutes over 5.5 (SD 3.4) unique days on the website. Family caregivers mostly used the website (alone or with a person with dementia) throughout the 8-week study. Only 3 people with dementia used it on their own. In total, 3 distinct engagement patterns emerged: low, moderate, and high. Low-engagement participants spent less time on the website during the 8 weeks, following a linear path from information to communication to documentation. Moderate- and high-engagement users showed more dynamic patterns, frequently navigating between information pages and communication tools to facilitate exploration of aspects related to advance care planning., Conclusions: The diverse engagement patterns underscore the need for personalized support in advance care planning and challenge the conventional linear advance care planning representations found in other web-based tools., (© Charlèss Dupont, Tinne Smets, Courtney Potts, Fanny Monnet, Lara Pivodic, Aline De Vleminck, Chantal Van Audenhove, Maurice Mulvenna, Lieve Van den Block. Originally published in JMIR Aging (https://aging.jmir.org).)

Objective: The primary study aims were to evaluate the implementation, mechanisms and context of a timely short-term specialised palliative care intervention for older people with frailty (Frailty+ intervention) as well as to assess the feasibility of a randomised controlled trial to evaluate Frailty+. Our secondary aim was to describe any preliminary effects of Frailty+., Design: Pilot randomised controlled trial with process evaluation., Setting/participants: We aimed to recruit 50 adults (≥70 years) with Clinical Frailty Scale score 5-7, and complex care needs and their main family carer, if available, from two Belgian hospitals on discharge., Interventions: Patients were randomised to the Frailty+ intervention alongside standard care or standard care alone., Outcome Measures: Implementation and trial feasibility were assessed through interviews, focus groups and quantitative data. The primary outcome to be used in a potential full-scale trial if the study is feasible and implementable was mean change in five palliative care symptoms over 8 weeks., Results: We enrolled 37 patients (19 intervention, 18 control) and 26 family carers (15 intervention, 11 control). Patients and family carers valued the home visits from palliative care nurses, and nurses saw value in Frailty+. But most patients received only one visit over 8 weeks, and nurses did not organise foreseen multidisciplinary meetings, referring to absence of urgent needs. Many aspects of the trial methods were feasible, but recruitment was challenging. The baseline mean score on the five palliative care symptoms was 6.0 and 5.6 in intervention and control group, respectively; and 4.5 and 4.1 at 8 weeks (adjusted ratio 1.0, ie, no effects on symptoms)., Conclusions: While Frailty+ was generally welcomed by older people with frailty, families and palliative care nurses, our process evaluation uncovered multiple barriers, mostly rooted in the current organisation of specialised palliative care that is tailored to advanced stages of illness. Ensuring timely access requires efforts beyond timely referral alone, and implies profound organisational and cultural change., Trial Registration Number: ISRCTN39282347., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2025. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ Group.)

Background: Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives of people with advanced illness. Yet, their use in palliative care research is limited., Aims: To introduce experience sampling methods to the field of palliative care as a valuable tool for studying the everyday experiences of people with advanced illness, and to present the findings of an experience sampling methods pilot study with people with advanced breast or advanced lung cancer., Evidence Used to Support the Information Presented: We draw on published health research using experience sampling methods. We present a newly developed experience sampling methods questionnaire (ESM-AC) and report pilot study findings on the feasibility and acceptability of experience sampling methods among people with advanced breast or lung cancer., Key Learning Points: Experience sampling methods hold potential to uncover the dynamics of everyday experiences of people with advanced illness. The methods offer considerable flexibility and options to answer a variety of research questions, but consideration is required regarding sampling protocols and participant burden. We showed appropriate feasibility and acceptable participant burden of the methods among people with advanced breast or advanced lung cancer., 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: 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.

Background: Older people who die from serious chronic disease typically experience long periods (months or years) of illness and complex fluctuations in their physical health and in their social, psychological and existential well-being. Our understanding of these end-of-life trajectories is very limited, focuses predominantly on physical function and clinical predictors and neglects inter-individual differences. A better understanding of end-of-life trajectories, including what is shared among people and what is individually specific, is needed for an optimal provision of palliative care and health services planning., Objectives: TRAJECT is a European Research Council-funded interdisciplinary project with a central aim to gain understanding of what is generalisable and what is individually specific in older people's end-of-life trajectories and in the circumstances that shape them., Design: Convergent mixed-methods design including a quantitative longitudinal survey study, a serial narrative study and a mortality follow-back survey., Methods and Analysis: TRAJECT applies a novel methodological and analytical framework, examining trajectories through two distinct scientific lenses, both suited for uncovering variability as well as general principles: a structured quantitative approach to capture fluctuations in a standardised way, and an experience-focused qualitative approach to study the subjective stories and meanings behind changes in health. The findings of the quantitative and qualitative methods will be integrated through triangulation and by systematically threading key findings from one method across to the other. The research is conducted in Belgium., Discussion: This project will lead to a new understanding of the varied ways in which older people's end-of-life trajectories unfold and which circumstances and experiences shape them. It will also reveal which elements of trajectories are shared across groups of people and which are individually specific. These new insights will provide a much-needed evidence base concerning groups at risk of poor well-being as they near death, which is needed to optimise palliative care practice, needs assessment, as well as health service planning., Competing Interests: The authors declare that there is no conflict of interest., (© The Author(s), 2024.)

Background: Cancer navigation programs aim to support, educate, and empower patients and families, addressing barriers to diagnostics, treatment, and care. Navigators engage with people to ensure timely access to services and resources. While promising for older people with cancer, these programs are scarce in Europe, and research on their effectiveness and implementation is limited. We describe the protocol of the EU NAVIGATE randomized controlled trial, aimed to evaluate (1) effectiveness and cost-effectiveness of NavCare-EU, an intervention that aims to support older people with cancer throughout their illness trajectory, spanning the continuum of supportive, palliative, and end-of-life care, and (2) the intervention's implementation processes and feasibility of its integration into different health care systems in Europe, contextual barriers and facilitators for effective and sustainable implementation, and mechanisms involved in reaching the outcomes., Methods: We will conduct a multisite pragmatic fast-track randomized controlled trial with embedded convergent mixed-method process evaluation in Belgium, Ireland, Italy, Netherlands, Poland, and Portugal. The study targets people with cancer and declining health, 70 years or older, and their close family caregivers. The trial compares the NavCare-EU intervention plus standard care with standard care alone. We will perform a baseline measurement prior to randomization and follow-up measurements at 12 weeks, 24 weeks, and 48 weeks in intervention and control group, and an additional measurement at 72 weeks in the control group. Primary outcomes, measured at 24 weeks are (1) the older person's global health status/quality of life, a 2-item subscale from EORTC-QLQ-C30 (revised) measuring health-related quality of life, (2) level of social support measured with Medical Outcomes Study Social Support Survey (MOS-SSS scale). The study will include at least 246 older persons with completed global health status/quality of life at 24 weeks., Discussion: The EU NAVIGATE trial will cross-nationally test the effectiveness and cost-effectiveness of a navigation intervention for older people with cancer and their family caregivers, and its implementation in different health care systems in Europe. As continuity and access to health, social, and community care is a priority for patients and caregivers, the trial is timely and critically needed., Trial Registration: Clinicaltrials.gov: identifier NCT06110312 (2023/10/31)., Competing Interests: Declarations. Ethics approval and consent to participate: Ethics approval from the relevant ethics committees were obtained in all participating countries. Belgium: Commissie Medische Ethiek, 09/08/2023; Ireland: SJH/TUH Joint Research Ethics Committee, 14/11/2023; Italy: Comitato Etico Territoriale Lombardia 4, Istituto Tumori, 31/07/2023; the Netherlands: METC Amsterdam UMC, 22/08/2023; Portugal: Ethics Committee of the Faculty of Medicine of the University of Coimbra and Ethics Committee of the Portuguese Institute of Oncology of Coimbra Francisco Gentil, 25/09/2023; Poland: Komisja Bioetyczna, Uniwersytetu Jagiellońskiego, 14/06/2023. If all eligibility criteria are met, the researcher or research assistant will obtain informed consent from both the older person and the close family caregiver (if there is one). Patients and caregivers will be given the time to consider participation and will be assured that they are free to withdraw their participation without any effect on their care. Written consent will be obtained without any coercion of study participants. The research team will provide all participants with full disclosure about the nature and goal of the study. Consent for publication: Not applicable. Competing interests: The authors declare that they have no competing interests., (© 2024. The Author(s).)

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.)

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.)