Richard Wagland

Background: Patients with cancer often experience oncological emergencies requiring immediate care, and the quality of acute oncology (AO) care varies between providers. Patient-reported experience measures (PREMs) are a key tool for quality improvement, but none currently exists for AO. This study developed a prototype PREM, the Patient-Reported Experience Measure for Acute OnCology (PREMAC), and conducted preliminary single-site psychometric testing. Materials and methods: A quality assessment framework guided development across three stages. Stage 1 generated a conceptual framework of accessing AO services from a scoping review and interviews with patients and health professionals. Stage 2 developed a prototype questionnaire, with content validity assessed by a Service User Reference Panel (SURP) and face validity tested through cognitive interviews. Stage 3 tested acceptability, feasibility, structural validity and internal consistency at one tertiary cancer centre in southern England. Results: Data integration identified ten domains, in the chronological order patients accessing AO experience them: reasons for accessing AO; patient preparedness; accessibility of care; the care environment; competence of care; communication and decision-making; compassionate care; the carer’s role; patient anxiety; and service issues including discharge. The 46-item prototype was completed by 171 respondents. Exploratory factor analysis of 18 four-category ordinal items, using polychoric correlations with minimum residual extraction and oblimin rotation (n = 121 complete cases), supported three provisional domains: information, communication, involvement and perceived care quality (α = 0.935); care environment, dignity, trust and safety (α = 0.711); and discharge information and preparedness (α = 0.704). Conclusion: PREMAC is the first PREM developed specifically for AO. Preliminary testing indicates the prototype is acceptable and feasible, with early evidence of internal coherence across three provisional domains at a single site. The domain structure and item allocations remain provisional; no total score is recommended. Multisite validation is required before PREMAC could support service comparison or benchmarking.

Background: Pediatric end‐of‐life care profoundly impacts families, yet existing reviews on bereaved parents' experiences lack methodological rigor and comprehensive synthesis. Identifying key quality indicators from parents' perspectives is essential for improving care. Objectives: This scoping review synthesizes evidence on bereaved parents' views of high‐quality pediatric end‐of‐life care, identifying critical domains and developing a thematic framework. Methods: We conducted a scoping review adhering to PRISMA‐ScR guidelines. Searches in MEDLINE, CINAHL, PsycINFO, PsycArticles, and AMED included studies without date restrictions. Two reviewers independently screened studies, extracted data, and conducted inductive thematic analysis. Results: From 4962 records, 20 studies (1997–2015) met inclusion criteria, comprising 16 qualitative and 4 quantitative studies. Three themes emerged: (1) Interpersonal Interaction (compassionate communication, shared decision‐making); (2) Interdisciplinary Care (symptom management, emotional, spiritual, and sibling support); and (3) Practical Support (care accessibility, skilled staff, financial/logistical assistance). Conclusions: Bereaved parents advocate for a holistic, family‐centred approach integrating empathetic communication, clinical expertise, and systemic support. These findings inform quality improvement initiatives and policy development in pediatric palliative care.

Objective: The prevalence of children needing palliative or end-of-life care is increasing. However, no comprehensive tool exists to assess the experiences of such care. We describe the development and testing of VOICES-Children (VOICES-C): the first questionnaire to assess care experiences of palliative and end-of-life services for children aged 0 to 18 years in the last 3 months of life. Methods: VOICES-Children was developed in 3 phases: (1) a literature review of care quality domains, parent interviews, healthcare professional (HCP) focus-groups/interviews, data integration, and prototype development; (2) prototype testing through HCP and parent interviews; and (3) completion of VOICES-C. In phase 1, 24 parents were interviewed, 38 HCPs (critical care nurses, physicians, palliative care staff, and specialist palliative care service staff) participated in focus groups, and 3 took part in an interview. Participants were recruited from 2 neonatal intensive care units, 2 pediatric intensive care units, 1 cardiac intensive care unit, and a children's specialist palliative care service. In phase 2, 10 HCPs and 14 parents were interviewed. Results: Data integration identified 19 meta-themes, including the importance of space, and the timing and amount of information. Testing demonstrated that VOICES-C captured parent experiences effectively. The final questionnaire comprised 83 questions about home care, the pediatric setting, and experiences of the last 2 days of life. Conclusions: VOICES-Children uses literature, experience data, and parental insights to produce a robust questionnaire of pediatric end-of-life care experience, administered postbereavement, that can be applied across healthcare settings. By assessing quality, services can be improved and inequities in delivery reduced.

Background: Patients with oncological emergencies require immediate specialist cancer care to ensure optimum outcomes. This is often a stressful, time-sensitive situation for patients and their families who describe having to navigate complex care pathways to access urgent treatment. Acute oncology was established as a subspecialty in the UK in 2009, with the goal to streamline emergency cancer care. Patient experiences of urgent care in acute oncology contexts have not specifically been explored; hence, it is unknown whether patient experiences of emergency cancer care have improved. This may be due to lack of a patient-reported experience measure for this purpose. Methods: A mixed methods scoping review was conducted from 2010 to April 2024, with the aim of identifying core aspects of the care experience important to patients with cancer during an acute oncological episode, based on published research evidence. Qualitative, quantitative, and mixed methods articles were sourced and screened in accordance with Joanna Briggs Institute scoping review guidance. Core domains of patient experience were collated and summarised using mixed methods evidence synthesis. Results: Fifteen articles reporting on 14 unique studies were included. Issues important to patient experiences of emergency cancer care were described by patients, healthcare professional, and carer proxies. Studies captured experiences of various care delivery models including telehealth, in-person presentation to an Emergency Department, and acute oncology services. Six core domains of patient experience arose from the synthesis: managing emotional distress, being treated with compassion and respect, deciding when to seek help, hospital environment, quality of care and communication, and discharge planning. Conclusions: This is the first review to identify existing literature on patient experiences of emergency cancer care, highlighting core domains of patient experience impactful for patients and their families. Patients’ decisions about when to seek help and the impact of discussing palliative care needs during an emergency were more specific to emergency cancer care, compared to issues like the hospital environment, which can be important throughout a patient’s cancer care journey. Results will help inform development of a patient-reported experience measure to allow healthcare providers to evaluate and continuously improve specialist urgent and emergency cancer care services.

Background: In adolescents and young adults (AYAs) with cancer, the importance of patient-centered research outcomes is increasingly acknowledged and there is a need for consensus on the most relevant outcomes. This review provides a comprehensive overview of outcomes relevant to AYAs with cancer in order to develop an AYA-specific core outcome set (COS) as part of the European project STRONG-AYA. Methods: A literature search was conducted to identify relevant articles in five databases. Each article was reviewed by two independent researchers, using Rayyan (an online tool) to screen articles by their title/abstract and then by their full text. Subsequently, the data were extracted using a predefined, tailored extraction framework. Results: In total, 17,301 articles were screened, of which 1631 were included in the analyses. Registry studies (52.9%) were the most used study type. Well-represented continents were North America (50.3%) and Europe (27.8%). Of the five core areas, functioning (47.0%) and epidemiology (44.9%) were covered most often, followed by physiological/clinical (42.4%), resource use (6.1%), and adverse events (4.5%). The outcome domains that were represented the most include mortality/survival (43.1%), delivery of care (23.4%), outcomes relating to neoplasms (22.7%), and emotional functioning/well-being (19.2%). Conclusions: This literature review provides a foundation for the development of an AYA-specific COS for improving the relevance and efficiency of measuring outcomes, the pooling of (international) research data, and the value of care for current and future AYAs with cancer. Finalization and refinement of the COS should be a priority for future research.

Aim: To assess the feasibility of video game-based trunk exercises using the Valedo^® system in a chronic stroke population. Method: Ten chronic stroke survivors (eight males and two females, mean age 63 ± 15 years) were asked to complete 18 intervention sessions, each lasting 45 min., over 6–8 weeks. Feasibility was evaluated quantitatively using the Psychosocial Impact of Assistive Devices Scale (PIADS) as well as through recruitment, retention, adherence, and safety measures. Qualitative data on feasibility were collected through post-intervention semi-structured interviews. Descriptive analysis was used to summarize participant characteristics, recruitment, retention, and adherence. Qualitative data were analyzed using thematic analysis of the interviews. Results: Twelve stroke survivors were recruited from Southampton (United Kingdom) and Riyadh (Kingdom of Saudi Arabia), with two participants dropping out after the baseline assessment session. The remaining ten participants completed the study with a mean adherence of 96.11% to the planned sessions. No serious adverse effects were reported, however, four participants did experience trunk muscle tightness and fatigue. Post-intervention interviews revealed that participants encountered some physical and cognitive challenges while playing the Valedo video games. However, they felt that the implementation of trunk exercises using video games was safe, as the exercises were performed in a secure environment and in safe positions. Conclusions: The findings suggest that the Valedo system is feasible for delivering trunk exercises to chronic stroke survivors. Several factors should be considered when implementing this type of intervention in the future.

Objectives To explore the supportive care needs of cancer survivors, the characteristics of patients with high levels of unmet need, changes in unmet need after treatment ends and differences in unmet needs of breast, colorectal and testicular survivors. Methods The method used was a prospective longitudinal mailed survey. Unmet needs, measured by 25-item modified Cancer Survivors Unmet Needs survey at baseline (immediately post-treatment) and 8 months later, were analysed descriptively. Results Of 434 breast, 186 colorectal and 75 testicular patients responding at baseline, 56.2%, 65.6% and 50.7%, respectively, had no unmet needs, the top decile having ≥10 (breast) or seven (colorectal and testicular) different needs and seven different unmet needs. The most frequently reported unmet need (all groups) was fear of cancer recurrence. Unmet needs fell significantly at 8 months for breast patients. Some patients reported new needs. Needs were lowest amongst colorectal survivors and differed between the three groups. Higher levels of unmet needs (breast and colorectal) were associated with having had chemotherapy. Conclusion Most survivors reported few unmet needs, but a small proportion have persisting or emerging needs. Routine or regular monitoring of unmet needs is required so that healthcare professionals can deliver personalised care based on individual needs, preferences and circumstances.

There are an increasing number of qualitative studies which focus on the dyad (couples, families, caregivers–patients, health care professionals–patients). However, there is limited literature regarding qualitative methodology for dyadic analysis when members of the couple have been interviewed separately. The aim of this article is to share the knowledge we gained from undertaking a novel approach to dyadic analysis. We used an adapted version of the Framework method on data gathered in a study exploring the impact of prostate cancer on younger men and their partners. In this article, we examine and reflect on the challenges of this type of analysis and describe how we analyzed the interview data from a dyadic point of view, to share what we learned in the process.

Purpose of the study The purpose was to explore the experience, information, support needs and decision-making of parents with congenital heart disease (CHD) during the COVID-19 crisis. Study design On-line survey design Setting An on-line survey with open/closed questions to explore the experiences of parents of children, as well as children and young people (CYP) with CHD during the COVID-19 crisis Patients Parents of children with CHD and CYP Results 184 parents and 36 CYP completed the survey. Parents worry about the virus (86.4%) vs. CYP (69.4%), whilst (89%) parents are vigilant for symptoms of the virus vs. CYP(69.4%). A thematic analysis of the qualitative comments covered 34 subthemes, forming eight-overarching themes: Virus 1)risk of infection, 2)information, guidance and advice, 3)change in health care provision, and 4)fears and anxieties; Lockdown and isolation 5)psychological and social impact, 6)keeping safe under lockdown, 7)provisions and dependence on others, 8)employment and income. Conclusions Parents and CYP were worried about the virus, although CYP less so. Parents and children however, were frustrated with the lack of specific and paediatric focused information and guidance, expressing disappointment with the adult centric information available. Parents also felt alone, especially with their concerns around the implications of cardiac service suspension and the implication for their childs health. In order to better support children and their families, resources need to be developed to address families and CYP concerns for their health during this pandemic.

Objective Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self‐manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self‐management support for people living with treatable but incurable cancer. Methods Qualitative longitudinal methods will examine how support needs change over time in relation to self‐management and unpredictable disease trajectories. Thirty patients and 30 carers will be recruited from two hospitals, each participating in three interviews over 1 year. Patients will be purposively sampled according to age, gender, cancer type and anticipated survival. Carers will be recruited via nomination by patients but interviewed separately. One‐off interviews will be conducted with 20 healthcare professionals, providing data from multiple perspectives. Based on interview findings, a modified Delphi process will map areas of consensus and disparity regarding conceptualisations and outcomes of self‐management support. Conclusion The key output will be practice recommendations in relation to self‐management support, producing evidence to inform service innovation for those living with treatable but incurable cancer.