Palliative Care in Hematology: A Systematic Review of the Components, Effectiveness, and Implementation.

CONTEXT: While the evidence supporting the benefits of integration of palliative care into cancer care for patients and informal caregivers is growing, it poses challenges for hematological cancer patients due to rapidly changing disease trajectories, uncertain prognosis, and diverse care needs. OBJECTIVES: This systematic review aims to provide an overview of the intervention components, the targeted outcomes, the effectiveness in improving patient and informal caregiver outcomes, and the implementation into clinical practice. METHODS: We systematically searched PubMed (MEDLINE), EMBASE, CENTRAL, PsycINFO, and CINAHL in March 2023. The studies included described interventions in palliative care, with multiple components, targeting patients with hematological cancer and/or their informal caregivers, and producing primary data on effectiveness or implementation. Quality was assessed using the QualSyst tool. RESULTS: We identified 19 reports on 16 different palliative care interventions, including four quasi-randomized controlled trials. These interventions were provided by secondary and tertiary palliative care providers in a hospital setting. Tertiary interventions significantly improved the most common patient outcomes, including pain, quality of life, symptom burden, depression, and anxiety. Meanwhile, secondary interventions were feasible and well-accepted by healthcare professionals and patients. Despite limited inclusion of informal caregivers, the results indicated significant improvements in quality of life and depression. CONCLUSION: While palliative care interventions are found to improve patient outcomes, future research is needed on the effectiveness of secondary palliative care interventions, integrating primary palliative care, and more reliable and frequent implementation measurements. More focus on informal caregivers and resource allocation based on patient needs is warranted.

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.

"A sincere 'how are you?' is already a sign of acknowledgement that you're there too." - Interview study on the support needs of adolescents and young adults (AYAs) living with a parent with cancer.

PURPOSE: Parental cancer brings changes and challenges which affect the whole family. Evidence shows heightened psychosocial risk among the offspring. Research among adolescents and young adults (AYAs) facing parental cancer has mainly focused on these psychosocial problems. As a reaction, there has been an increase in research on the needs of this population, since this knowledge is crucial for developing appropriate support. Despite this increase, some AYAs are still underrepresented, namely those over eighteen years old and those who have a parent with incurable cancer. Moreover, the factors hampering or fostering access to and receipt of support addressing their needs are under-investigated. Increasing our understanding of these issues is crucial to developing more effective support interventions for these young people. Our aim was therefore to gain insight into the perceived support needs of AYAs who have a parent with cancer, including the mentioned underrepresented subgroups, and the perceived factors facilitating or hindering their use of support. METHODS: We conducted semi-structured interviews with 17 AYAs who have a parent with cancer of any type and stage, which were analyzed using conventional Qualitative Content Analysis (QCA). RESULTS: Six main categories emerged from the data, encompassing various subcategories: 1) Needs surrounding the time of disclosure, 2) Information needs, 3) Informal support needs, 4) Need for effective personal coping strategies, 5) Formal support needs, and 6) Contextual and medical factors affecting support needs. AYAs perceived family members, friends and teachers as important sources of informal support, but lacked contact with peers who also have a parent with cancer. They expressed a need for formal informational and emotional support from their parent's medical team, (onco)psychologists, and their general practitioner. AYAs faced barriers in accessing formal support. A proactive attitude from healthcare providers and information about available support would help them meet their needs. Furthermore, we shed new light on needs and issues in post-secondary education. CONCLUSIONS: AYAs who are living with their parent with cancer experience informational, emotional, and practical needs in multiple contexts, such as the home, school, leisure and hospital environment. They identify their informal and formal network as important key figures in addressing these needs.

Cause of death and making end-of-life decisions in preterm infants has not changed over time: A mortality follow-back survey.

AIM: This study aimed to evaluate changes over time in cause of death and making end-of-life decisions in preterm infants. METHODS: A follow-back survey was conducted of all preterm infants who died between September 2016 and December 2017 in Flanders and Brussels, Belgium. Cause of death was obtained from the death certificate and information on end-of-life decisions (ELDs) through an anonymous questionnaire of the certifying physician. Results were compared with a previous study performed between August 1999 and July 2000. RESULTS: In the cohort 1999-2000 and 2016-2017, respectively, 150 and 135 deaths were included. A significantly higher proportion of infants born before 26 weeks of gestation was found in the 2016-2017 cohort (53% vs. 24% in 1999-2000, p < 0.001). Extreme immaturity (<26 weeks) remained the most prevalent cause with a significant increase in the 2016-2017 cohort (48% vs. 28% in 1999-2000, p < 0.001). The overall prevalence of ELDs was similar across study periods (61%). Non-treatment decisions remained the most common ELD (36% and 37%). CONCLUSION: Infants born at the limits of viability have become more prevalent among infant deaths, possibly due to a change in attitude towards periviable births. Neither the process of making ELDs nor the cause of death has changed over time.

The roles and experiences of adolescents with cystic fibrosis and their parents during transition: A qualitative interview study.

PURPOSE: Inadequate participation of Adolescents and Young Adults (AYAs) and parents are well-established barriers of transition. Shifts in roles are mandatory with increasing responsibilities for AYAs and decreasing involvement of parents in care. This study explores the shifts in roles of AYAs and their parents and its association with the subjective experience of transition. METHODS: We conducted in-depth semi-structured interviews with AYAs living with Cystic Fibrosis and parents. Participants were recruited through patient organizations via convenience sampling and questioned on which roles they assumed during transition. Three authors performed an interpretative phenomenological analysis, establishing separate code trees for AYAs and parents. Data saturation was achieved. RESULTS: 18 AYAs (age 21y±2.9) and 14 parents (age 50y±2.0) were included. We identified five common themes: (1) the reciprocal reliance between AYAs and parents, (2) the policies of physicians and hospitals, (3) the AYAs' changing appeal and need for support, (4) the identification of parents as co-patients, and (5) the enforced changes in the roles of parents. AYAs primarily addressed roles related to self-management, while parents discussed family functioning. CONCLUSIONS: This study identified motives underlying the assumption of roles by AYAs and parents. Both AYAs and parents addressed similar themes, highlighting their mutual challenges and needs. In contrast to AYAs, parents' desired roles were undefined and a latent sense of responsibility was identified as an important motive. Healthcare providers should acknowledge parents' challenging position and communicate transparently about changing roles. Additionally, healthcare providers should recognize that imposing restrictive roles may result in parental resistance, but can also foster AYAs' skill development. Future research should examine the short- and long-term impact of role-management interventions in AYAs and their parents.

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.

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.

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.

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data.

This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month.    Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.

Pregnancy termination at a viable stage in daily clinical practice: A nationwide mortality follow-back study in Flanders, Belgium.

OBJECTIVE: Congenital malformations are frequently diagnosed prenatally even at a viable stage. No adequate registration of incidence and characteristics of late termination of pregnancy (TOP) or abortion for medical reasons exists in Flanders. METHODS: Nationwide mortality follow-back survey sent to physicians signing death certificates of all stillbirths for 22 weeks gestation onward (September 2016-December 2017) in Flanders, Belgium. Questions measured whether late TOP preceded stillbirth, and which clinical and sociodemographic characteristics were indicated. Questionnaire data were linked with sociodemographic information from death certificates. RESULTS: Response rate was 56% (203/366). 38% of stillbirths (77/203) concerned late TOP. In 88.3% of late TOPs, physicians classified congenital anomalies of the foetus as serious or very serious (incompatibility with life outside the womb or severe neurological or physical impairment). In 26% of cases, late TOP was first suggested by the physician rather than spontaneously requested by parents (73%). 88% of late TOPs were discussed in open team meetings. CONCLUSIONS: 2/5 stillbirths were preceded by late TOP, indicating severe underreportation by existing registrations and a dire need for adequate registration methods. Although late TOP was most often explicitly requested by parents, in » cases termination was suggested first by physicians. Parents are sometimes hesitant to bring up late TOP themselves, indicating that TOP should always be counselled as an equivalent option.

Components of Perinatal Palliative Care: An Integrative Review.

When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included. Three independent authors reviewed titles, abstracts and full texts against eligibility criteria. PRISMA guidelines were followed; 21.893 records were identified; 69 publications met inclusion criteria. Twelve publications (17.4%) discussed the effect of a PPC program. Other publications concerned the description of PPC programs, most often by means of a program description (22/69; 31.9%), guidelines (14/769; 20.3%) or case study (10/69; 14.5%). Outcome measures envisioned four main target categories: care coordination, parents and family members, care for the fetus/neonate and healthcare providers. No trials exist to date. Analysis of working components revealed components related to changes directed to the policy of the hospital wards and components involving actual care being provided within the PPC program, directed to the fetus or infant, the family, involved healthcare providers or external actors. PPC is a growing research field where evidence consists mainly of descriptive studies and guidelines. The extensive list of possible PPC components can serve as a checklist for developing future initiatives worldwide. PPC includes several important actors: the fetus/infant and their family and included healthcare providers on both maternity and neonatal wards. This leads to a large variety of possible care components. However, while some studies show proof of concept, an evidence base to determine which components are actually effective is lacking.

Using behavioral theories to study health-promoting behaviors in palliative care research.

BACKGROUND: Behavioral theories are often used to better understand and change health-promoting behaviors and develop evidence-based interventions. However, researchers often lack of knowledge on how to use these theories in palliative care and people confronted with serious illness. Clear examples or guidelines are needed. AIM: To describe how behavioral theories can be used to gain insight into critical factors of health-promoting behavior in seriously ill people, using a case example of "starting a conversation about palliative care with the physician" for people with incurable cancer. METHODS: We used a health promotion approach. Step 1: We chose a theory. Step 2: We applied and adapted the selected theory by performing interviews with the target population which resulted in a new behavioral model. Step 3: We operationalized the factors of this model. An expert group checked content validity. We tested the questionnaire cognitively. Step 4: We conducted a survey study and performed logistic regression analyses to identify the most important factors. RESULTS: Step 1: We selected the Theory of Planned Behavior. Step 2: This theory was applicable to the target behavior, but needed extending. Step 3: The final survey included 131 items. Step 4: Attitudinal factors were the most important factors associated with the target behavior of starting a conversation about palliative care with the physician. CONCLUSIONS: This paper describes a method applied to a specific example, offering guidance for researchers and practitioners interested in understanding and changing a target behavior and its factors in seriously ill people.

Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions.

OBJECTIVE: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. RESULTS: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit. CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.

Consultation of parents and healthcare professionals in end-of-life decision-making for neonates and infants: a population-level mortality follow-back physician survey.

BACKGROUND: End-of-life decisions with potential life-shortening effect in neonates and infants are common. We aimed to evaluate how often and in what manner neonatologists consult with parents and other healthcare providers in these cases, and whether consultation is dependent on the type of end-of-life decision made. METHODS: Based on all deaths under the age of one that occurred between September 2016 and December 2017 in Flanders, Belgium, a nationwide mortality follow-back survey was performed. The survey asked about different types of end-of-life decisions, and whether and why parents and/or other healthcare providers had or had not been consulted. RESULTS: Response rate was 83% of the total population. End-of-life decisions in neonates and infants were consulted both with parents (92%) and other healthcare providers (90%), and agreement was reached between parents and healthcare providers in most cases (96%). When medication with an explicit life-shortening intent was administered parents were always consulted prior to the decision; however when medication without explicit life-shortening intention was administered parents were not consulted in 25% of the cases. CONCLUSIONS: Shared decision-making between parents and physicians in case of neonatal or infant end-of-life decision-making is the norm in daily practice. All cases without parental consultation concerned non-treatment decisions or comfort medication without explicit life-shortening intention where physicians deemed the medical situation clear and unambiguous. However, we recommend to at least inform parents of medical options, and to explore other possibilities to engage parents in reaching a shared decision. Physicians consult other healthcare providers before making an end-of-life decision in most cases.

Identification of the most important factors related to people with cancer starting a palliative care conversation: A survey study.

OBJECTIVE: A late conversation about palliative care needs can lead to suboptimal care in the final months/weeks of life. Insight into factors related to patients' communication about palliative care is needed. This study aims to identify the factors associated with starting/intending to start a conversation about palliative care with the physician. METHODS: We performed a cross-sectional interviewer-administered survey among people with incurable cancer. Purposive sampling was used, taking into account theoretically relevant heterogeneity. The questionnaire was developed based on the theory of planned behavior. Uni- and multivariable logistic regression analyses were performed. RESULTS: Out of 80 participants, ten (13%) started the palliative care conversation and 18 (23%) intended to do so. People holding a positive attitude towards starting/intending to start the conversation (odds ratio [OR] 4.74; 95% CI 2.35-9.54), perceiving more benefits of it (OR 2.60; 95% CI 1.37-4.96) and perceiving a positive attitude towards the behavior in family/friends (OR 2.07; 95% CI 1.26-3.41) and the physician (OR 2.19; 95% CI 1.39-3.45) were more likely to start/intend to start a palliative care conversation; people perceiving more disadvantages (OR 0.53; 95% CI 0.32-0.87) and barriers (OR 0.31; 95% CI 0.15-0.63) were less likely to do so. These factors explained 64% of the variance. CONCLUSIONS: Our findings show that psychological and perceived socio-environmental factors, particularly patients' attitudes, are associated with starting a conversation about palliative care. Theory-based interventions targeting these strong associations might have a high potential to empower people with cancer to take the initiative in communication about palliative care and to improve timely initiation of palliative care.

End-of-life decisions in neonates and infants: a nationwide mortality follow-back survey.

OBJECTIVES: Neonatology has undergone important clinical and legal changes; however, the implications for end-of-life decision-making in seriously ill neonates to date are unknown. Our aim was to examine changes in prevalence and characteristics of end-of-life decisions (ELDs) in neonatology. METHODS: We performed a nationwide mortality follow-back survey in August 1999 to July 2000 and September 2016 to December 2017 in Flanders, Belgium. Data were linked to information from death certificates. For each death under the age of 1, physicians were asked to complete an anonymous questionnaire about which ELDs were made preceding death. RESULTS: The response rate was 87% in 1999-2000 (253/292) and 83% in 2016-2017 (229/276). The proportion of deaths of infants born before 26 weeks' gestation was increased (14% vs 34%, p=0.001). Prevalence of ELDs remained stable at 60%, with non-treatment decisions occurring in about 35% of all deaths. Use of medication with an explicit life-shortening intention was prevalent in 7%-10% of all deaths. In early neonatal death (<7 days old) medication with an explicit life-shortening intention decreased from 12% to 6%, in late neonatal death (7-27 days old), it increased from 0% to 26%, and in postneonatal death (>27 days old), it increased from 2% to 10%. CONCLUSIONS: Over a timespan of 17 year, the prevalence of neonatal ELDs has remained stable. A substantial number of deaths was preceded by the intentionally hastening of death by administrating medication. While surveying solely the physician perspective in this paper, there is a need for an open multidisciplinary debate, including, for example, nursing staff and family members, based on clinical as well as ethical and jurisdictional reflections to discuss the need for international guidelines.

The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility.

BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. METHODS: Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences. RESULTS: The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. CONCLUSION: The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.

Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study.

BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. AIM: To identify barriers and facilitators experienced by parents in making an end-of-life decision for their infant. DESIGN: Qualitative study using face-to-face semi-structured interviews. SETTING/PARTICIPANTS: We interviewed 23 parents with a child that died after an end-of-life decision at a Neonatal Intensive Care Unit between April and September 2018. RESULTS: Parents stated barriers and facilitators within 4 themes: 1. Clinical knowledge and prognosis; 2. Quality of information provision; 3. Emotion regulation; and 4. Psychosocial environment. Facilitators include knowing whether the prognosis includes long-term negative quality of life, knowing all treatment options, receiving information according to health literacy level, being able to process intense emotions, having experienced counseling and practical help. Barriers include a lack of general medical knowledge, being unprepared for a poor prognosis, having an uninformed psychologist. CONCLUSIONS: We found that clinical information and psychosocial support aid parents in decision-making. Information is best tailored to health literacy. Psychosocial support can be provided by experienced, informed counselors, social services and sibling support, distinguishing between verbal and non-verbal coping preferences, and calm, familiar architecture. Intense emotions may hinder absorption of clinical information, therefore interventions to aid emotion regulation and reduce cognitive load may be looked at in further research. Adjustment of the Situations, Opinions and Options, Parents, Information, Emotions framework based on our results can be evaluated.

Face-Validated Quality Indicators for Appropriateness of End-of-Life Care in Children with Serious Illness: A Study Using the RAND/University of California at Los Angeles Appropriateness Method.

OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurologic conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables. STUDY DESIGN: Modified RAND/University of California at Los Angeles appropriateness method. We identified potential indicators per illness group through systematic literature review, scoping review, and expert interviews. Three unique expert panels, a cancer (n = 19), neurology (n = 21), and genetic/congenital (n = 17) panel, participated in interviews and rated indicators in individual ratings, group discussions, and second individual ratings. Each indicator was rated on a scale from 1 to 9 for suitability. Consensus was calculated with the interpercentile range adjusted for symmetry formula. Indicators with consensus about unsuitability were removed, those with consensus about suitability were retained, and those with lack of consensus deliberated in the group discussion. Experts included pediatricians, nurses, psychologists, physiotherapists, pharmacologists, care coordinators, general practitioners, social workers from hospitals, care teams, and general practice. RESULTS: Literature review and expert interviews yielded 115 potential indicators for cancer, 111 for neurologic conditions, and 99 for genetic/congenital conditions. We combined similar indicators, resulting in respectively 36, 32, and 33 indicators per group. Expert scoring approved 21 indicators for cancer, 24 for neurologic conditions, and 23 for genetic/congenital conditions. CONCLUSIONS: Our indicators can be applied to administrative data to evaluate appropriateness of children's end-of-life care. Differences from adults' indicators stress the specificity of children's end-of-life care. Individual care and remaining aspects, such as family support, can be evaluated with complementary tools.

Palliative care utilisation: family carers' behaviours and determinants-a qualitative interview study.

OBJECTIVES: Most research on starting palliative care focuses on the role of healthcare services and professional carers. However, patients and their family carers may also play a role. Especially opportunities for starting palliative care might exist among family carers. This study focused on family carers by identifying their behaviours and underlying determinants that might contribute to starting palliative care. METHODS: A qualitative study with 16 family carers of deceased persons who used palliative care was conducted using semistructured, face-to-face interviews. Constant comparison analysis was used to identify groups of behaviours that influenced starting palliative care and related determinants. The behavioural determinants were matched with concepts in existing behavioural theories. A preliminary behavioural model was developed. RESULTS: Most reported behaviours regarding starting palliative care were related to communicating with the seriously ill person, other family members and professional carers; seeking information and helping the seriously ill person process information from professional carers; and organising and coordinating care. Determinants facilitating and hindering these behaviours included awareness (eg, of poor health), knowledge (eg, concerning palliative care), attitudes (eg, negative connotations of palliative care) and social influences (eg, important others' opinions about palliative care). CONCLUSIONS: This study identified relevant family carers' behaviours and related determinants that can contribute to starting palliative care. As these determinants are changeable, the palliative care behavioural model that resulted from this study can serve as a basis for the development of behavioural interventions aiming at supporting family carers in performing behaviours that might contribute to starting palliative care.