Patient-reported outcome measures of the impact of cancer on patient’s everyday lives: a systematic review

Purpose: Patients with advanced disease are living longer and commonly used patient-reported outcome measures (PROMs) may miss relevant elements of the quality of extended survival. This systematic review examines the measures used to capture aspects of the quality of survival including impact on patients’ everyday lives such as finances, work and family roles. Methods: Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO restricted to English language articles. Information on study characteristics, instruments and outcomes was systematically extracted and synthesised. A predefined set of criteria was used to rate the quality of studies. Results: From 2761 potentially relevant articles, 22 met all inclusion criteria, including 10 concerning financial distress, 3 on roles and responsibilities and 9 on multiple aspects of social well-being. Generally, studies were not of high quality; many lacked bias free participant selection, had confounding factors and had not accounted for all participants. High levels of financial distress were reported and were associated with multiple demographic factors such as age and income. There were few reports concerned with impacts on patients’ roles/responsibilities in everyday life although practical and emotional struggles with parenting were identified. Social difficulties were common and associated with multiple factors including being a caregiver. Many studies were single time-point surveys and used non-validated measures. Exceptions were employment of the COST and Social Difficulties Inventory (SDI), validated measures of financial and social distress respectively. Conclusions: Impact on some important parts of patients’ everyday lives is insufficiently and inconsistently captured. Further PROM development focussing on roles and responsibilities, including work and caring for dependents, is warranted. Implications for Cancer Survivors: Factors such as finances, employment and responsibility for caring for dependents (e.g. children and elderly relatives) can affect the well-being of cancer survivors. There is a need to ensure that any instruments used to assess patients’ social well-being are broad enough to include these areas so that any difficulties arising can be better understood and appropriately supported

The Medicalization of Popular Culture: Epistemical, Ethical and Aesthetical Structures of Biomedical Knowledge as Cultural Artefact.

This handbook explores the ways biomedicine and pop culture interact while simultaneously introducing the reader with the tools and ideas behind this new field of enquiry. From comic books to health professionals, from the arts to genetics, from sci-fi to medical education, from TV series to ethics, it offers different entry points to an exciting and central aspect of contemporary culture: how and what we learn about (and from) scientific knowledge and its representation in pop culture. Divided into three sections the handbook surveys the basics, the micro-, and the macroaspects of this interaction between specialized knowledge and cultural production: After the introduction of basic concepts of and approaches to the topic from a variety of disciplines, the respective theories and methods are applied in specific case studies. The final section is concerned with larger social and historical trends of the use of biomedical knowledge in popular culture. Presenting over twenty-five original articles from international scholars with different disciplinary backgrounds, this handbook introduces the topic of pop culture and biomedicine to both new and mature researchers alike. The articles, all complete with a rich source of further references, are aimed at being a sincere entry point to researchers and academic educators interested in this somewhat unexplored field of culture and biomedicine