Experiences with implementing advance care planning (ACP-GP) in Belgian general practice in the context of a cluster RCT: a process evaluation using the RE-AIM framework.

BACKGROUND: General practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results. METHODS: We conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions. RESULTS: Thirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future. CONCLUSIONS: Implementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice. TRIAL REGISTRATION: ISRCTN12995230; prospectively registered on 19/06/2020.

General practitioner advance care planning knowledge and attitudes: ACP-GP cluster-randomised controlled trial.

OBJECTIVES: Advance care planning (ACP) supports adults understanding and sharing their values, goals, and preferences regarding future medical care. General practitioners (GPs) are key figures in conducting ACP conversations with patients. GPs' ACP knowledge and attitudes have been identified as potential barriers. This study evaluates the effects of ACP-GP, a complex ACP intervention, on GPs' knowledge and attitudes. METHODS: A phase-III cluster-randomised controlled trial. 35 Belgian GPs participated. The intervention included a training for GPs, ACP conversations, a patient workbook, and a documentation template. GPs' knowledge and attitudes were assessed using an adaptation of the Next Steps questionnaire, at baseline, three, and six months postintervention. Generalised estimating equations were applied to analyse the data. RESULTS: Analyses showed no intervention effect on GPs' knowledge (W(2)=4.18, p=.123) and attitudes (all W(2)<3.85, all p>.146) compared with the control group. CONCLUSIONS: The ACP-GP intervention did not improve GPs' knowledge and attitudes. Failure to detect an effect may stem from a ceiling effect, with GPs scoring high on baseline outcomes across groups. Questionnaires may require fine-tuning to accurately map their suggested role as potential barriers. TRIAL REGISTRATION NUMBER: Prospectively registered at ISRCTN (ISRCTN12995230) on 19 June 2020.

Willingness to support neighbours practically or emotionally: a cross-sectional survey among the general public.

Background: Wider social networks are increasingly recognized for supporting people with care needs. Health-promoting initiatives around the end of life aim to foster these social connections but currently provide little insight into how willing people are to help neighbours facing support needs. Objectives: This study describes how willing people are to help neighbours who need support practically or emotionally, whether there is a difference in willingness depending on the type of support needed and what determines this willingness. Design: We applied a cross-sectional survey design. Methods: We distributed 4400 questionnaires to a random sample of people aged >15 across four municipalities in Flanders, Belgium. These surveys included attitudinal and experiential questions related to serious illness, caregiving and dying. Respondents rated their willingness (scale of 1-5) to provide support to different neighbours in hypothetical scenarios: (1) an older person in need of assistance and (2) a caregiver of a dying partner. Results: A total of 2008 questionnaires were returned (45.6%). The average willingness to support neighbours was 3.41 (case 1) and 3.85 (case 2). Helping with groceries scored highest; cooking and keeping company scored lowest. Factors associated with higher willingness included an optimistic outlook about receiving support from others, family caregiving experience and prior volunteering around serious illness or dying. Conclusion: People are generally willing to support their neighbours who need help practically or emotionally, especially when they have prior experience with illness, death or dying and when they felt supported by different groups of people. Community-based models that build support around people with care needs could explore to what extent this willingness translates into durable community support. Initiatives promoting social connection and cohesion around serious illness, caregiving and dying may harness this potential through experiential learning.

Sexual satisfaction and its predictors in patients with advanced cancer and their family caregivers in six European countries: Baseline data from the DIAdIC study.

OBJECTIVE: To identify predictors of sexual satisfaction in patients with advanced cancer and their family caregivers. METHODS: Cross-sectional study using baseline survey data from a randomized controlled trial in six European countries. Patients with advanced cancer and their family caregiver completed measures on sexual satisfaction (one item from Functional Assessment of Cancer Therapy - General questionnaire for patients and Caregiver Quality of Life Index-Cancer scale for family caregivers) and health-related characteristics. Multivariable linear regressions were performed for all predictors (identified based on literature) with sexual satisfaction as dependent variable. RESULTS: The sample comprised 431 patient-family caregiver dyads. Patients with prostate or gynecological cancer reported lower sexual satisfaction (respectively B = -0.267 95% CI: -1.674, -0.594 and B = -0.196, 95% CI -2.103, -0.452). Higher emotional (B = 0.278, 95% CI 0.024, 0.057) physical (B = 0.305, 95% CI 0.012, 0.025) and social functioning (B = 0.151, 95% CI 0.001, 0.013), global health (B = 0.356, 95% CI 0.007, 0.013) and social wellbeing (B = 0.161, 95% CI 0.013, 0.082) among patients were associated with higher sexual satisfaction. Among family caregivers, sexual satisfaction was lower with increased age (B = -0.142, 95% CI -0.022, -0.004). Higher emotional functioning (B = 0.027, 95% CI 0.011, 0.043) and quality of life (B = 0.165, 95% CI -0.165, 0.716) were associated with higher sexual satisfaction in family caregivers. CONCLUSIONS: The results underscore that sexual wellbeing of patients and family caregivers is related to health related factors in physical, emotional, and social domains. Patients and family caregivers could benefit from a dyadic approach to address sexual wellbeing.

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers.

BACKGROUND: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. AIM: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers-and if, when, how, and why these experiences change over time. DESIGN: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. SETTING/PARTICIPANTS: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. RESULTS: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. CONCLUSION: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals' thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.

Complex advance care planning intervention in general practice (ACP-GP): a cluster-randomised controlled trial.

BACKGROUND: Advance care planning (ACP) is an iterative communication process about patients' preferences for future care. In general practice, there are barriers to ACP at patient, GP, and healthcare-system levels. A complex intervention may be necessary to reduce barriers. AIM: To evaluate the effects of a complex ACP intervention for patients with chronic, life-limiting illness in general practice (ACP-GP). DESIGN AND SETTING: A cluster-randomised controlled trial was undertaken in Belgian general practice. METHOD: ACP-GP included a patient workbook, GP training, ACP conversations, and a documentation template. The control group received usual care. Outcomes were the 15-item ACP Engagement Survey for patients and the ACP Self-Efficacy scale for GPs. Linear mixed models evaluated differences at 3 months (T1, effectiveness evaluation) and 6 months (T2) post-baseline. Analysis was intention-to-treat. RESULTS: In total, 35 GPs and 95 patients were randomised. Patient ACP engagement did not differ between the intervention and control group at T1 (baseline-adjusted mean difference = 0.34; 95% confidence interval [CI] = -0.02 to 0.69; P = 0.062) or T2 (baseline-adjusted mean difference = 0.20; 95% CI = -0.17 to 0.57; P = 0.28). For GP ACP self-efficacy, there were no significant differences between groups at T1 (baseline-adjusted mean difference = 0.16; 95% CI = -0.04 to 0.35; P = 0.11) or at T2 (baseline-adjusted mean difference = 0.11; 95% CI = -0.09 to 0.31; P = 0.27). CONCLUSION: ACP-GP did not improve patient engagement and GP self-efficacy more than usual care. Both groups showed patterns of increase from baseline. Trial procedures and the COVID-19 pandemic may have increased awareness about ACP.

A compassionate university for serious illness, death, and bereavement: Qualitative study of student and staff experiences and support needs.

Serious illness, death, and bereavement are common experiences within the work and study context. This study aims to explore the experiences and support needs of university students and staff confronted with serious illness, death, and bereavement. Semi-structured interviews and focus groups were conducted with 21 students and 26 staff. A thematic analysis resulted in three overarching themes: the university as a high-pressure environment; navigating the complex university information and support system; and disenfranchized grief. Four themes were identified in terms of what participants needed from the university: clear processes and procedures; flexibility in policy application; proactive support and recognition; and activities to enhance awareness and interpersonal communication skills. Findings from this study could enable higher education institutions to become more compassionate schools and workplaces.

What Domains of Belgian Euthanasia Practice are Governed and by Which Sources of Regulation: A Scoping Review.

BACKGROUND: Multiple sources of regulation seek to shape euthanasia practice in Belgium, including legislation and training. This study comprehensively mapped which of these sources govern which domains of euthanasia practice, such health professionals' obligations, or managing patient requests. METHOD: Scoping review methodology was used to search for scholarly records which discussed Belgian euthanasia regulation. Template analysis was used to generate themes describing the domains of euthanasia practice governed by sources of regulation. RESULTS: Of 1364 records screened, 107 records were included. Multiple sources of regulation govern each domain, which are: the permissible scope of euthanasia; the legal status of a euthanasia death; the euthanasia process; the rights, obligations, and roles of those involved; system workings; and support for health professionals who provide euthanasia. CONCLUSIONS: Domains with significant yet fragmented regulation may lead to inconsistent care provision. Policymakers should develop coherent guidance to support health professionals to navigate this regulatory landscape.

Mapping Sources of Assisted Dying Regulation in Belgium: A Scoping Review of the Literature.

Belgium has over 20 years of experience regulating assisted dying (AD). While much research considers this end-of-life practice, no studies have comprehensively analysed the various sources of regulation that govern it, including law, professional standards, and ethics. A scoping review identified all sources of regulation that guide AD practice, and their regulatory functions. Databases and reference lists were searched for records which met inclusion criteria between 11/2/22 and 25/3/22. Existing scholarship was used to identify sources of regulation, and thematically analyse their functions. Of the initial sample of 1364 records, 107 were included. Six sources of regulation were identified: law, policies, professional standards, training, advisory documents, and system design. Three regulatory functions were identified: prescribing conduct, scaffolding to support practice, and monitoring the system. The Belgian AD regulatory framework is multifaceted, complex, and fragmented. Providers must navigate and reconcile numerous sources of guidance providing this form of end-of-life care.

How compassionate is your neighborhood? Results of a cross-sectional survey on neighborhood participation regarding serious illness, death, and loss.

We conducted a cross-sectional survey measuring the extent and nature of neighborhood participation regarding serious illness, death and loss and the factors that are associated with it. We distributed the survey to 2324 adult citizens in two neighborhoods in Flanders, Belgium, to which 714 citizens responded (response rate 30.7%). Of the respondents, 42.4% participated in at least one action in their neighborhood around serious illness, death, or loss, for 30.8% of them this participation was sporadic. Most of the respondents participated by helping neighbors (32.4%) or by volunteering (10.3%). We found a positive association between perceived neighborhood social cohesion (ß = 0.100; CI = 0.003-0.040), previous experiences with serious illness, death, and loss (ß = 0.158; CI = 0.204-0.586) and neighborhood participation around serious illness, death and loss. Future research should investigate strategies on how to move from death literacy developed through illness, caregiving and bereavement experiences to neighborhood participation around these topics.

What does the general public know about palliative care? A population-based survey.

OBJECTIVES: The need for public education on palliative care has been widely argued for. To develop effective educational strategies, a stronger evidence base is needed on what exactly is known and unknown about palliative care as well as what the differences are between subgroups. METHODS: We conducted a cross-sectional population-based survey. Mail questionnaires were sent to a random sample of 4400 citizens (aged ≥16 years) within 4 municipalities in Flanders, Belgium. The Palliative Care Knowledge Scale (PaCKS) was used to measure knowledge. Associations between knowledge and sociodemographics and various experiential factors were tested, as well as the congruence between actual and self-perceived knowledge scores. RESULTS: Response was obtained from 2008 (45.6%) citizens. The mean PaCKS score was 7.87 (SD 3.41; range 0-13) with the highest proportion (84.7%) correctly answering that palliative care is not specifically for older adults and the lowest (32.1%) correctly answering that improving the ability to participate in daily life is a palliative care goal. Being aged between 30 and 59, non-religious, more highly educated, having professional healthcare experience and knowing palliative care through personal experience were significantly associated with higher knowledge, while sex and informal caregiving experience were not. 52.4% self-perceived their knowledge as lower than it actually was. CONCLUSIONS: While the general public seems to be familiar with some basic concepts of palliative care, several key aspects remain unknown. Educational strategies, with suggested potential for community-based and experience-based approaches, may need to focus specifically on these aspects and not just on the broader palliative care concept.

A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology.

Background: eHealth programs could be a flexible and scalable resource to support and empower people with advanced cancer and their family caregivers. A face-to-face intervention that has demonstrated effectiveness is the "FOCUS" program, developed and tested in the USA. Recently the FOCUS program was translated and adapted to the European context as part of an international study in six European countries, resulting in the "FOCUS+" program. FOCUS+ served as the basis for development of the web-based iFOCUS program. Objective: We aim to (1) describe the development process of the iFOCUS program, (2) outline the challenges we encountered and how they were overcome, and (3) present findings regarding the acceptability and usability of iFOCUS. Methods: We used the four phased agile Scrum methodology to develop iFOCUS and applied set timeframes of rapid program development and evaluation (sprints). Five teams were involved in the development i.e. a core development group, a web development team, an international consortium, audio-visual experts, and potential end-users. Results: Development followed seven steps, integrated across the four phases of Scrum: (1) concept design, (2) development of mock-ups, (3) Feedback from the international consortium, (4) technical development of iFOCUS, (5) creating versions for the six participating countries, (6) preliminary testing of iFOCUS and (7) implementing the final version in a randomized controlled trial. User testing included 42 participants (twenty patient-family caregiver dyads and two bereaved family caregivers) who reviewed the iFOCUS program. Users found the iFOCUS program to be acceptable and usable. Feedback mainly focused on text size and fonts. Minor changes to the content, tailoring, and program flow were required. During development we encountered program specific and general challenges. Using the Scrum methodology facilitated iterative development to address these issues. For some challenges, such as tailoring, we had to make pragmatic choices due to time and resource limitations. Conclusions/discussion: The development of a tailored, self-managed psychoeducational eHealth program for people with advanced cancer and their family caregivers is an intense process and requires pragmatic choices. By keeping the emphasis on the target population during development, no specific remarks pertaining to advanced cancer were identified. Some challenges we encountered are common to eHealth development, others were related to program specific requirements. Using the Scrum methodology allows teams to efficiently collaborate during program development and increases the flexibility of the development process. Interpersonal contact between research staff and potential end-users is recommended during and after the development of eHealth programs.

Self-efficacy of advanced cancer patients for participation in treatment-related decision-making in six European countries: the ACTION study.

PURPOSE: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients' coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer. METHODS: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores. RESULTS: The sample included 660 patients with a mean age of 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.41 (95% CI 0.77 to 2.06)), better quality of life (B 2.34 (95% CI 0.89 to 3.80)), and more patient satisfaction (B 7.59 (95% CI 5.61 to 9.56)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 7.85 (95% CI 2.28 to 13.42)), whereas Italian patients had a lower level ((B -7.50 (95% CI -13.04 to -1.96)) than those in Belgium. CONCLUSION: Coping style, quality of life, and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes.

Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study.

In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment.  Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents.  Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies.

'It's communication between people who are going through the same thing': experiences of informal interactions in hospital cancer treatment settings.

PURPOSE: In hospital settings, patients, visitors, and staff engage in many interactions outside formal clinical encounters. Whilst many of these may be inconsequential, others contribute significantly to how patients and their carers experience cancer and its treatment. This article aims to explore the experiences and significance of interactions that occur outside formal clinical encounters in hospital cancer treatment settings. METHODS: Semi-structured interviews were conducted with cancer patients, carers, and staff recruited from two hospital sites and cancer support groups. Hermeneutic phenomenology informed lines of questioning and data analysis. RESULTS: Thirty-one people participated in the study: 18 cancer patients, four carers, and nine staff members. The experiences of informal interactions were grouped into three themes: connecting, making sense, and enacting care. The participants described how these encounters allowed connection with others in the hospital spaces, facilitating a sense of belonging, normality, and self-worth. Through these interactions, individuals participated in making sense of their experiences, to better anticipate the decisions and challenges that might lie ahead. By connecting with other individuals, they cared for others and felt cared for themselves, and were able to learn from, teach, and support each other. CONCLUSIONS: Outside the confines of the clinical discourses participants negotiate terms of engagement, sharing of information, expertise, and their own personal stories that they may employ to contribute to the individuals around them. These interactions occur within a loose and evolving framework of social interactions, an 'informal community', in which cancer patients, carers, and staff members play active and meaningful roles.

Family carers' experiences regarding patient transfers between care settings in palliative care: an interview study.

BACKGROUND: To understand how family carers experienced the illness trajectory of their next of kin related to transfers taken place between care settings in palliative care, their experiences and attitude regarding the transfer decision and their experiences regarding patient transfers across settings. METHODS: Semi-structured interviews were held with 21 family carers. A constant comparative approach was used to analyze data. RESULTS: Three themes were identified after data analysis: (I) patient transfer dynamics, (II) experiences regarding the changed care environment and (III) impact of the transfer on the family carer. The dynamics of the patient's transfer were affected by the balance between the care provision (professional and informal care) and the changes in the patient's needs. Experiences regarding patient transfers strongly varied depending on the setting and were based on the personnel's conduct and the quality of receiving information. Study results revealed shortcomings in perceived inter-professional communication and continuity of information during a patient's hospitalization. Concomitant feelings of relief, anxiety or feeling insecure could arise in situations of a patient's transfer. CONCLUSIONS: This study highlighted the adaptability of family carers when caring for their next of kin with palliative care needs. To support carers in coping with their role as caregivers and to share the responsibility of caregiving, involved healthcare professionals should timely evaluate family carers' preferences and needs and adapt the care organization accordingly. A pro-active attitude, which anticipates on the possibility of an impending decompensation of the family carer, is recommended. When the decision for a patient's transfer is taken, multiple factors influenced the choice of the care setting. Healthcare professionals need to take these factors into account when discussing, with patients and carers, the need for a transfer. Continuity of information can be improved. Further development and evaluation of interventions, aimed at improving informational continuity can be recommended.

Discomfort With Suffering and Dying, a Cross-Sectional Survey of the General Public.

CONTEXT: Death and the process of dying have become increasingly medicalized and professionalized. The associated cultural estrangement from death may affect how comfortable we feel about death and dying. This study examines the general public's discomfort with another person's suffering and dying, and whether these feelings are associated with specific personal characteristics or experiences. OBJECTIVES: Cross-sectional survey in a random sample of people aged 16 or older in four municipalities in Flanders, Belgium (N=4400). We used the self-developed construct Discomfort with someone's suffering and dying. A directed acyclic graph guided the development of a multivariable regression model which explored the effect of different variables on the main outcome measure. RESULTS: A total of 2008 completed questionnaires were returned (response rate: 45.6%). Average discomfort with someone's suffering and dying was 3.74 (SD = 0.89). Being female or currently mourning a loss were associated with more discomfort. Not being religious, having better knowledge about palliative care, having worked in healthcare, having been with someone else at the time of their death and having been culturally exposed to death and dying were associated with less discomfort. CONCLUSION: A considerable level of discomfort is present within the general public about the suffering and dying of others and this may increase social stigma and a tendency to avoid seriously ill people and their social surroundings. Our findings suggest that interventions may help shift this societal discomfort if they incorporate a focus on cultural and experiential exposure and increasing knowledge about palliative care.

Do cancer centres and palliative care wards routinely measure patients' quality of life? An international cross-sectional survey study.

PURPOSE: Routinely assessing quality of life (QoL) of patients with cancer is crucial for improving patient-centred cancer care. However, little is known about whether or how cancer centres assess QoL for clinical practice or for research purposes. Therefore, our study aimed to investigate if QoL data is collected and if so, how and for what purposes. METHOD: We conducted a cross-sectional survey study among 32 cancer centres in Europe and Canada. Centre representatives identified persons who they judged to have sufficient insight into QoL data collections in their wards to complete the survey. Descriptive statistics were used to summarise the information on QoL assessment and documentation. RESULTS: There were 20 (62.5%) responding cancer centres. In total, 30 questionnaires were completed, of which 13 were completed for cancer wards and 17 for palliative care wards. We found that 23.1% and 38.5% of the cancer wards routinely assessed QoL among inpatients and outpatients with cancer, respectively, whereas, in palliative care wards, 52.9% assessed QoL for outpatients with cancer and 70.6% for the inpatients. Wide variabilities were observed between the cancer centres in how, how often, when and which instruments they used to assess QoL. CONCLUSION: A sizable proportion of the cancer wards, especially, and palliative care wards apparently does not routinely assess patients' QoL, and we found wide variabilities between the cancer centres in how they do it. To promote routine assessment of patients' QoL, we proposed several actions, such as addressing barriers to implementing patient-reported outcome measures through innovative e-health platforms.

Advance Care Planning in Belgium.

This paper aims to 1) describe current levels of Advance Care Planning (ACP) development since 2002 in Belgium, 2) report on challenges and opportunities to inspire other countries with similar contextual characteristics and 3) support further development of ACP practice and research in Belgium. To address these aims, we consulted local researchers, 12 domain experts and (grey) literature (regulatory documents, reports, policy documents and practice guidelines) on ACP, palliative care, and related healthcare topics. Since 2002, when the Patient's Right Law was passed in the federal Parliament, Belgium has had a specific medicolegal context for ACP. Initiatives to improve the uptake of ACP have been taken, e.g. standardised documentation, reimbursement codes for physicians provided by the government, and implementation of quality indicators in hospitals and nursing homes. Most of these initiatives are grassroots or predominantly oriented towards a single group of professions, e.g. general practitioners, disregarding the role that other professions can play. The patient groups most often targeted are those with cancer and older adults. Limited but growing attention is given to those with low health literacy or other minority groups. Main barriers to ACP in Belgium are: no unified platform to exchange outcomes of ACP discussions or advance directives between healthcare professionals and though efforts are made, ACP is still predominantly oriented towards documentation.