Laura Gangeri

BACKGROUND Cancer remains a leading cause of morbidity and mortality worldwide. Given its substantial burden, quality of life has become a key outcome in cancer care and research. Patient-reported outcome measures (PROMs) are commonly used to assess quality of life. Although qualitative research is essential for establishing PROM content validity, patient narratives are less often collected and analysed systematically once PROMs are implemented. Adding open-ended responses to quantitative PROM data may provide policy-relevant insights into what patients themselves prioritise. OBJECTIVE This study has aimed to identify the factors that people living with or beyond cancer across Europe perceive as having the greatest impact on their quality of life. METHODS Following a pan-European validation study of the newly developed EUonQoL-Kit – a set of questionnaires designed to assess the quality of life of people living with or beyond cancer in Europe – the responses to the final open-ended question “Having completed the questionnaire, what do you feel most impacts your quality of life?” were collected. Responses underwent qualitative thematic analysis using a coding framework iteratively developed and interpreted by researchers and people with lived experience of cancer involved as ‘co-researchers’. RESULTS Of the 4,284 cancer patients and survivors participating in the EUonQoL-Kit validation study, 3,350 (78.2%) provided a response to the final open-ended question. Factors perceived as having the greatest impact on quality of life were categorised into 23 distinct themes, covering six overarching domains: Physical health, Psychological wellbeing, Social health, Overall health, Healthcare experience and Environment. The most frequently reported factors included physical symptoms, overall health, relationships and connectivity, emotions and feelings, and impact of care pathway. CONCLUSIONS This study provides a comprehensive overview of the factors that impact quality of life most in people living with or beyond cancer across Europe. Combining structured PROMs with open-ended patient input may support more patient-centred quality of life measurement and interpretation and help align care and policy priorities with what matters most to patients.

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.