Bianca Scacciati

PurposeThe European Oncology Quality of Life (EUonQoL) project aims to develop a questionnaire toolkit (EUonQoL-Kit) to assess the quality of life (QoL) of cancer patients and survivors across Europe.MethodsThe EUonQoL-Kit development used mixed-methods and a co-design approach. Data was collected in six countries (Denmark, France, Germany, Italy, Netherlands and UK). The target populations were patients in active treatment (A), survivors (B) and patients requiring palliative care (C). A review of existing QoL theoretical models produced an initial EUonQoL conceptual framework. Semi-structured interviews and a Delphi survey evaluated/modified the framework. Existing validated items were used to construct the toolkit, including Computer Adaptive Testing (CAT), where available. A usability study evaluated EUonQoL-Kit.v1. Data triangulation and consensus methodology guided EUonQoL-Kit.v2.ResultsThe initial conceptual framework covered four multi-dimensional domains: physical, social and overall health, and psychological wellbeing. The interviews and Delphi survey included 75 and 155 participants, respectively. The domain ‘healthcare experience’ was identified and included in the framework. EUonQoL-Kit.v1 resulted in three static questionnaires, one for each target population (n items- A=75; B=67; C=79). Following usability testing with 53 participants, EUonQoL-Kit.v2 was produced via a multi-stakeholder consensus development panel, creating a shortened version (n items- A=50; B=50; C=44). Dynamic versions of these questionnaires were developed using the EORTC CAT Core system.ConclusionsEUonQoL-Kit is a novel toolkit developed to assess QoL across the cancer continuum and inform health policy within Europe. Its psychometric properties are currently being evaluated using data collected on more than 4200 patients across 32 countries.

Background: Despite the strong emphasis in recent scientific literature on the pharmacological features of CAR‐T cells, patients’ quality of life (QoL) and needs, by contrast, have received little attention. Aim: This study aims to investigate patients’ perspectives on their QoL and needs in a referral centre for CAR‐T cell treatment in Italy. Methods: This is a descriptive, qualitative and prospective study conducted at a single centre. Patients were recruited from a list of those who underwent the treatment or who were eligible to do so. Patients were asked to participate in a semistructured interview. The number of people to be interviewed was not predetermined but was established continuously until meaning saturation was achieved. The interviews were audio recorded, transcribed verbatim, and analysed through constructivist lenses using reflexive thematic analysis. Results: Participants were 12 patients (age mean: 57.88; SD = 9.62; range = 39–70) enrolled in an Italian Comprehensive Cancer Center. From the analysis of the interviews, 7 themes were identified: (1) therapeutic journey to reach CAR‐T cell therapy; (2) CAR‐T cell images; (3) perception of the quality of care received; (4) three challenging moments; (5) emerging issues to address; (6) coping strategies and (7) needs. Some themes have been organised into subthemes that detail their specific aspects. Starting from the quotations, 41 needs have been identified and organised into 5 macro areas: (1) needs during hospitalisation; (2) existential needs; (3) needs for improving QoL; (4) need for quality and quantity of information and (5) needs for care. The list of needs has been transformed into a checklist, serving as a preliminary step for subsequent studies aimed at identifying and quantifying the needs of patients. Conclusions: Results indicate that the QoL of patients undergoing CAR‐T cell therapy is impaired during hospitalisation and in the subsequent months following infusion. Physical symptoms including fatigue, drowsiness, cognitive slowing or dysfunction emerged. Nonetheless, patients employ various coping strategies to cope with these challenging periods. A multitude of needs, often unaddressed, has emerged. For this matter, a first draft for a checklist of needs has been realised. Should future studies validate its structure, this tool may prove beneficial in both clinical and research settings to identify and monitor patients’ needs throughout the continuum of their treatment pathway.

Objectives: Communicating a cancer diagnosis to a child is a complex challenge for parents. This study aims to explore (1) the communication strategies and beliefs of parents with cancer when communicating with their children and (2) the needs of these parents. Methods: Semi-structured interviews were conducted with parents with cancer being treated at an Italian comprehensive cancer center and their healthy partners, when present. The interviews were analyzed through a constructivist approach using reflexive thematic analysis. The number of parents to be interviewed was not predetermined, but the meaning saturation procedure was followed. Results: Ten parents were interviewed, meaning saturation was reached at the seventh interview. Five themes were created: (1) the challenges parents faced at this sensitive time; (2) the emotions parents experienced; (3) the beliefs that may have influenced how they communicate the illness to their children; (4) the strategies parents used to communicate the illness to their children and (5) parents’ perception of their children’s understanding of the illness. Fifty-seven needs, often unmet, were also identified and were grouped into three categories: (1) “existential” needs; (2) support needs; and (3) needs related to continuing to be and act as parents. Significance of results: This study provides important insights for healthcare professionals to consider in order to better support and care for these parents.

Background: Systematic adaptation of evidence-informed interventions is critical for effective transfer across settings. Public health palliative care interventions pose unique challenges because of their complexity and embedding in dynamic, real-life settings. The ADAPT guidance provides a comprehensive framework for systematically adapting evidence-informed health interventions, yet its application in public health palliative care remains unexplored. Aim: Within the EU NAVIGATE project, this study describes the international adaptation process of a Canadian navigation program supporting older people with cancer experiencing declining health, for implementation in six European countries. It also reflects on the methodological insights gained from applying the ADAPT guidance in public health palliative care. Design: Using an iterative five-stage multi-method approach, we followed the ADAPT guidance and its recommended frameworks. Stage 1 assessed context-intervention fit and identified core and adaptable components of the original intervention. Stage 2 adapted implementation materials, while stage 3 involved a contextual analysis. Stage 4 focused on adapting the training for implementers, and stage 5 reviewed feasibility. Results: The ADAPT guidance proved flexible and useful, though systematic adaptation posed challenges due to the unique complexities of public health palliative care interventions. These included balancing intervention integrity with cultural sensitivities and local juridical regulations regarding end of life. Our process addressed these challenges through contextual assessments, identifying core components, engaging with original developers, and collaboration between local and international adaptation teams. Conclusions: A systematic adaptation process, guided by the ADAPT guidance is feasible, but transferring public health palliative care interventions requires careful methodological, contextual, and conceptual considerations.