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Introduction: Improving access to genetic testing has increased the number of individuals identified with cancer genetic predisposition. Hereditary Breast and Ovarian Cancer (HBOC) and Lynch syndrome (LS) are key examples of high-risk hereditary cancer syndromes. Ensuring that carriers of germline pathogenic/likely pathogenic variants (GPVs) receive evidence-based risk counseling, surveillance and risk-reducing interventions remains a global challenge. Variations in implementation and reporting of international guidelines across healthcare systems contributes to this problem.

Methods: An international workshop on cancer genetic care held from March 12–15 2025 in Switzerland brought together 40 experts on this topic from 10 countries. The workshop combined evidence-based presentations with expert-led discussions and considered novel strategies, which were synthesized in key discussion points.

Results: Participants highlighted major inconsistencies in reporting age of initiation and uptake of surveillance, follow-up intervals, and uptake of risk-reducing interventions for carriers of GPV associated with genetic predisposition to cancer between and within countries. These differences are due to variations in available technology, insurance coverage, and sociocultural attitudes that shape national clinical guidelines. Participants emphasized the need for a standardized approach for reporting surveillance practices, including clear definitions of gene-specific recommendations, timing of follow-up, and alternatives when ideal resources are limited. In addition to these reporting issues, participants also noted the need for sustained outreach for lifelong follow-up surveillance of GPV carriers through digital as well as low-tech approaches.

Conclusion: Standardized reporting of surveillance and risk-reducing practices across countries may improve the quality and comparability of data in cancer genetic predisposition, reveal gaps in genetic care, and inform outreach strategies for engaging GPV carriers in lifelong cancer risk management.

Objectives: This study aimed to describe palliative medicine physicians' experiences performing pain assessment using the Numeric Rating Scale (NRS) - one of the most widely used pain assessment tools - for patients with cancer receiving specialised palliative care.

Study design: This qualitative study used reflexive thematic analysis.

Setting: The study was conducted in specialised palliative care settings.

Participants: Semi-structured interviews were conducted with 14 palliative medicine physicians in specialised palliative care.

Analysis: The interviews were transcribed and analysed using reflexive thematic analysis.

Results: Four themes were identified: 'Striving to create a shared understanding',  'Meeting individual needs', 'Interpreting and managing ratings' and 'Importance of organizational structures'. This can be seen as a process that moves from creating a shared foundation through individual patient meetings and handling NRS ratings to organisational-level challenges.

Conclusions: The study shows the complexity needed within palliative cancer care when using the most common pain assessment tool in Sweden, the NRS. The tool may seem simplistic, but, as shown in this study, the physicians found interpreting the assessments challenging for the whole team. This complexity should be incorporated into future healthcare education and training within the palliative care area, where patients often have chronic pain conditions in combination with cognitive impairment. Future research needs to focus on developing reliable pain assessment methods for patients who are cognitively impaired because of the cancer.

Objective: The aim of this study was to translate, culturally adapt, and validate the Swedish Thanatophobia Scale.

Methods: Forward and back translation, cultural adaptation, content validation, and psychometric testing were undertaken through interviews with experts and surveying of healthcare professionals.

Results: The results from expert ratings (n = 7) for the Item Content Validity Index were calculated for scale understandability (mean, 0.90), clarity (mean, 0.91), sensitivity (mean, 0.94), and relevance (mean, 0.96). Interviews (n = 10) confirmed the importance of the scale questions and subject matter. The scale was tested among a sample of 386 participants (physicians = 104; registered nurses = 282). No significant differences were found between ratings from physicians and registered nurses. Exploratory Factor Analysis supported the unidimensionality of the scale. The Cronbach's alpha for the total scale was 0.89, indicating good internal consistency.

Conclusions: The Swedish Thanatophobia Scale appears to be a valid and reliable measure of healthcare professionals’ attitudes toward caring for patients in palliative care.

Objective: The Serious Illness Care Program was developed to support goals and values discussions between seriously ill patients and their clinicians. The core competencies, that is, the essential clinical conversation skills that are described as requisite for effective serious illness conversations (SICs) in practice, have not yet been explicated. This integrative systematic review aimed to identify core competencies for SICs in the context of the Serious Illness Care Program. 

Methods: Articles published between January 2014 and March 2023 were identified in MEDLINE, PsycINFO, CINAHL, and PubMed databases. In total, 313 records underwent title and abstract screening, and 96 full-text articles were assessed for eligibility. The articles were critically appraised using the Joanna Briggs Institute Critical Appraisal Guidelines, and data were analyzed using thematic synthesis.

Results: In total, 53 articles were included. Clinicians' core competencies for SICs were described in 3 themes: conversation resources, intrapersonal capabilities, and interpersonal capabilities. Conversation resources included using the conversation guide as a tool, together with applying appropriate communication skills to support better communication. Intrapersonal capabilities included calibrating one's own attitudes and mindset as well as confidence and self-assurance to engage in SICs. Interpersonal capabilities focused on the clinician's ability to interact with patients and family members to foster a mutually trusting relationship, including empathetic communication with attention and adherence to patient and family members views, goals, needs, and preferences.

Conclusions: Clinicians need to efficiently combine conversation resources with intrapersonal and interpersonal skills to successfully conduct and interact in SICs.

Background: Ariadne Labs' Serious Illness Care Program (SICP), inclusive of the Serious Illness Conversation Guide (SICG), has been adapted for use in a variety of settings and among diverse population groups. Explicating the core elements of serious illness conversations could support the inclusion or exclusion of certain components in future iterations of the programme and the guide.

Aim: This integrative systematic review aimed to identify and describe core elements of serious illness conversations in relation to the SICP and/or SICG.

Design: Literature published between 1 January 2014 and 20 March 2023 was searched in MEDLINE, PsycINFO, CINAHL and PubMed. All articles were evaluated using the Joanna Briggs Institute Critical Appraisal Guidelines. Data were analysed with thematic synthesis.

Results: A total of 64 articles met the inclusion criteria. Three themes were revealed: (1) serious illness conversations serve different functions that are reflected in how they are conveyed; (2) serious illness conversations endeavour to discover what matters to patients and (3) serious illness conversations seek to align what patients want in their life and care.

Conclusions: Core elements of serious illness conversations included explicating the intention, framing, expectations and directions for the conversation. This encompassed discussing current and possible trajectories with a view towards uncovering matters of importance to the patient as a person. Preferences and priorities could be used to inform future preparation and recommendations. Serious illness conversation elements could be adapted and altered depending on the intended purpose of the conversation.

BACKGROUND: In Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.

OBJECTIVE: The aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.

METHODS: All expected deaths at RCHs from 1 October 2015 to 31 December 2016 and registered in the Swedish Register of Palliative Care were included. Univariate and multivariate logistic regression were used to compare the RCH residents, or their family members, who had received documented EOL discussions with a physician (the EOL discussion group) and the non-EOL discussion group.

RESULTS: The EOL discussion group (n=17 071) had a higher prevalence of pain, nausea, anxiety, death rattles and shortness of breath reported, compared with the non-EOL discussion group (n=4164). Those with symptoms were more often completely relieved and had more often been prescribed PRN drugs against that symptom in the EOL discussion group. All differences remained significant when adjusting for age, time living in unit and cause of death.

CONCLUSION: The results indicate that EOL discussions are correlated with higher prevalence of symptoms, but also with better symptom relief and prescription of symptom drugs PRN when symptomatic. A possible explanation for this is that the EOL discussion can work as an opportunity to discuss symptoms and treatment for symptom relief.

Background: Previous research found that healthcare professionals had low preparedness for palliative care. Thus, it is necessary to explore healthcare professionals' self-efficacy. The Swedish Self-Efficacy in Palliative Care Scale (SEPC-SE) evaluates readiness in communication, patient management and multidisciplinary teamwork; however, it should be tested on a larger population. Furthermore, the constructs of the SEPC-SE should be compared to that of the original SEPC.

Aim: This study aimed to evaluate the consensus between the construct validity and reliability of the SEPC and the translated and adapted SEPC-SE. Furthermore, it aimed to describe and compare the self-efficacy of nurses and physicians in hospitals and explore the associated factors.

Methods: The nurses (n = 288) and physicians (n = 104) completed the SEPC-SE. Factor analysis with Cronbach's alpha evaluated validity and reliability, and an analysis using the Mann-Whitney U test compared self-efficacy and multiple linear regression-associated factors.

Results: The SEPC-SE revealed three factors with high reliability. Education or experience in specialised palliative care was minor, especially for nurses. Self-efficacy was highest in patient management (nurses, median [md] = 74.57, physicians md = 81.71, p = 0.010) and communication (nurses md = 69.88, physicians md = 77.00, p = 0.141) and lowest in multidisciplinary teamwork (nurses md = 52.44, physicians md = 62.88, p = 0.001). The strongest associations with self-efficacy were education at work and advanced homecare experiences. In addition, there were significant associations between years in the profession, male sex, physicians and university education.

Conclusion: The SEPC-SE is valid and reliable for measuring self-efficacy. Nurses had lower self-efficacy than physicians. Physicians were associated with higher self-efficacy and had more education and experience in palliative care settings, which may explain their levels of self-efficacy.

Background: The population is aging, leading to an increased need for palliative care and end-of-life care. There is a lack of research on the use of video consultations for knowledge transfer between specialist and general palliative care. The aim of this study was to describe healthcare professionals’ experiences of video consultations in palliative care in community homecare and nursing homes in rural areas.

Methods: Individual interviews (n = 11) were conducted with five community nurses, one occupational therapist, two specialist palliative nurses, and three specialist palliative care physicians. The data were analysed using reflexive thematic analysis.

Results: The analysis identified three themes: feeling comfortable with increased availability of specialist expertise; seeing each other facilitates communication; and being supported by physically present care professionals is essential.

Conclusion: HCPs suggest that video consultations are an effective way to increase access to specialist palliative care and provide more equal care to patients with palliative care needs in rural community care.

Background: The Serious Illness Care Programme was developed to promote more, better and earlier serious illness conversations. Conversations about goals and values are associated with improved experiences and outcomes for seriously ill patients. Clinicians’ attitudes and beliefs are thought to influence the uptake and performance of serious illness conversations, yet little is known about how clinicians perceive the impact of these conversations on patients. This study aimed to explore physicians’ perceptions regarding the impact of serious illness conversations for patients.

Methods: The Serious Illness Care Programme was implemented as a quality improvement project in two hospitals in Southern Sweden. Focus group evaluation discussions were conducted with 14 physicians and inductive thematic analysis was undertaken.

Results: The results revealed that physicians considered potential perils and optimised potential payoffs for patients when engaging in serious illness conversations. Potential perils encompassed inappropriate timing, damaging emotions and shattering hopes. Potential payoffs included reflection time, secure space, and united understandings.

Conclusions: Physicians depicted a balance in evaluating the perils and payoffs of serious illness conversations for patients and recognised the interrelation of these possibilities through continual assessment and adjustment.

Objectives: Symptom management and support of the family members (FMs) are consideredessential aspects of palliative care. During end of life, patients are often not able to self-reportsymptoms. There is little knowledge in the literature of how healthcare professionals(HCPs) assess symptoms compared with FMs.The objective was to compare the assessment ofsymptoms and symptom relief during the final week of life between what was reported by FMsand what was reported by HCPs.

Methods: Data from the Swedish Register of Palliative Care from 2021 and 2022 were usedto compare congruity of the assessments by the FMs and by HCPs regarding occurrence and reliefof three symptoms (pain, anxiety and confusion), using Cohen’s kappa.

Results: A total of 1131 patients were included. The agreement between FMs and HCPs was poorfor occurrence of pain and confusion (kappa 0.25 and 0.16), but fair for occurrence of anxiety(kappa 0.30). When agreeing on a symptom being present, agreement on relief of thatsymptom was poor (kappa 0.04 for pain, 0.10 for anxiety and 0.01 for confusion). The trendwas that HCPs more often rated occurrence of pain and anxiety, less often occurrence ofconfusion and more often complete symptom relief compared with the FMs.

Conclusions: The views of FMs and HCPs of the patients’ symptoms differ in the end-of-life context, but both report important information and their symptom assessments should beconsidered both together and individually. More communication between HCPs and FMs couldprobably bridge some of these differences.