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This scoping review represents the first phase of a broader project: developing and testing a Patient Report Experience Measure for patients accessing Acute onCology services (PREMAC). People with cancer often need to access acute oncology (AO) services for oncological emergencies caused by their disease or treatment. Patients may be worried about the quality of care they receive i.e., how clinicians interact with them, the advice and/or treatments they receive, waiting times. Trusts are required to obtain feedback from patients who receive AO services, however, there is currently no measure available for this purpose. The overarching aim of PREMAC is to develop and test a PREM, suitable as an audit and quality improvement tool, for healthcare providers to measure patient experience of e AO care.

BackgroundPatients diagnosed with cancer face many challenges and need a good understanding of their diagnosis and proposed treatments to make informed decisions about their care. Health literacy plays an important role in this and low health literacy has been associated with poorer outcomes. The aims of this review are to identify which outcomes relate to health literacy in patients with cancer, and to combine this through a mixed studies approach with the patient experience as described through qualitative studies.MethodsFour electronic databases were searched in January 2021 to identify records relating to health literacy and patients with cancer. Records were independently screened then assessed for inclusion by two reviewers according to the following criteria: patients aged ≥18 years with cancer, English language publication AND health literacy measured with validated tool and measured outcome associated with health literacy OR qualitative study exploring the role of health literacy as patients make decisions about health. Quality was independently assessed by two reviewers. A narrative synthesis was performed, and findings integrated through concept mapping. This systematic review was registered with PROSPERO, entry CRD42020166454.Results4441 records were retrieved. Following de-duplication, 2496 titles and abstracts were screened and full texts of 405 papers were reviewed for eligibility. 66 papers relating to 60 studies met the eligibility criteria. Lower health literacy was associated with greater difficulties understanding and processing cancer related information, poorer quality of life and poorer experience of care. Personal and situational influences contributed to how participants processed information and reached decisions about their care.ConclusionThis review highlights the important role of health literacy for patients with cancer. Outcomes are poorer for those who experience difficulties with health literacy. Further efforts should be made to facilitate understanding, develop health literacy and support patients to become more involved in their care.

Supplemental material, sj-pdf-1-qhr-10.1177_10497323211011599 for Using the Framework Method for the Analysis of Qualitative Dyadic Data in Health Research by Nicole Collaço, Richard Wagland, Obrey Alexis, Anna Gavin, Adam Glaser and Eila K. Watson in Qualitative Health Research

Introduction: Prognostic disclosure is an important component of communication in palliative care. Disclosing information on poor prognosis may affect quality of life (QoL) of palliative care patients. However, the effects of prognostic disclosure on QoL across different cultures and countries are unclear.Objective: To review the effects of prognostic disclosure on QoL of palliative care patients.Methods: A systematic review was conducted across seven databases (AMED, CINAHL plus, Cochrane Library, Medline (via the PubMed interface), Embase, Scopus and Web of Science). All primary studies, of any design, that explored the effects of prognostic disclosure on QoL of adult palliative care patients were eligible.Results: A total of 1926 records were screened for eligibility. Twenty-five articles were included (11 cross-sectional, 10 cohort, 3 mixed methods and 1 qualitative study). Studies were conducted in 11 countries. Five studies reported the sources of prognostic disclosure, while 20 studies did not. Emotional QoL was the most reported domain among the studies. The effects of prognostic disclosure on emotional aspects, overall QoL and other domains, including symptoms, physical functions, role functions, social functions and cognitive functions, were inconsistent.Conclusions: The effects of prognostic disclosure on QoL across cultures and countries are inconsistent. Cultural differences are not sufficient to explain the effects. Future research is needed to explore the association between prognostic disclosure and QoL, and develop tools to support clinicians to share prognostic information in the most sensitive and supportive way.

Objective: Clinical options for managing non-metastatic prostate cancer (PCa) vary. Each option has associated side-effects leading to difficulty in decision-making. This study aimed to assess the relationship between patient involvement in treatment decision-making and subsequent decision regret (DR), and quantify the impact of health-related quality of life (HRQL) outcomes on DR.Methods: Men living in the United Kingdom, 18-42 months post-diagnosis of PCa were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC-26), EQ-5D-5L and an item on involvement in treatment decision-making. Multivariable ordinal regression was utilised with DR categorised as none, mild or moderate/severe regret.Results: 17,193 men with stage I-III PCa completed the DRS: 36.6% reported no regret, 43.3% mild regret and 20.0% moderate/severe regret. The odds of reporting DR were greater if men indicated their views were not taken into account (OR=6.42, 95%CI 5.39-7.64) or were involved ‘to some extent’ in decision-making (OR=4.63, 95%CI 4.27-5.02), compared to men who were ‘definitely’ involved. After adjustment, including for involvement, men reporting moderate/big problems with urinary, bowel or sexual function were more likely to experience regret compared to men with no/small problems. Better HRQL scores were associated with lower levels of DR.Conclusions: This large-scale study demonstrates the benefit of patient involvement in treatment decision-making for non-metastatic PCa. However, men experiencing side-effects and poorer HRQL report greater DR. Promoting engagement in clinical decision-making represents good practice and may reduce the risk of subsequent regret.

Purpose. Due to recent treatment advances, men are increasingly living longer with advanced prostate cancer (PCa). This study sought to understand men’s experiences of living with and adjusting to advanced hormone-responsive PCa and how this influenced their quality of life (QoL), in order to highlight how support could be optimized. Methods. Participants were recruited through a UK wide survey—the ‘Life After Prostate Cancer Diagnosis’ study. In-depth telephone interviews were conducted with 24 men (aged 46–77 years) with advanced (stage IV) hormone-responsive PCa diagnosed 18–42 months previously. Thematic analysis was undertaken using a framework approach. Results. Most participants perceived their QoL to be relatively good, which was influenced by the following factors (enablers to ‘living well’ with PCa): a sense of connectedness to others, engagement in meaningful activities, resources (social, cognitive, financial), ability to manage uncertainty, utilization of adjustment strategies and support, communication and information from health professionals. Barriers to ‘living well’ with PCa were often the converse of these factors. These also included more troublesome PCa-related symptoms and stronger perceptions of loss and restriction. Conclusions. In our study, men living with advanced hormone-responsive PCa often reported a good QoL. Exploring the influences on QoL in men with advanced PCa indicates how future interventions might improve the QoL of men who are struggling. Further research is required to develop and test interventions that enhance QoL for these men.