Women’s Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The “Lives at Risk Study”

Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women's understandings of risk as they "journeyed" through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited ( N = 25) from a large UK Health Board, 2014-2015, completing a "Book of Experience," and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: "Subjective Understandings of Risk" and "Journeying Toward an Unknown Future." Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, diverting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients' foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future

Clinician attitudes towards cancer treatment guidelines in Australia

Abstract Objectives Clinical Practice Guidelines (CPGs) are designed to guide treatment decisions, yet adherence rates vary widely. To characterise perceived barriers and facilitators to cancer treatment CPG adherence in Australia, and estimate the frequency of previous qualitative research findings, a survey was distributed to Australian oncologists. Results The sample is described and validated guideline attitude scores reported for different groups. Differences in mean CPG attitude scores across clinician subgroups and associations between frequency of CPG use and clinician characteristics were calculated; with 48 respondents there was limited statistical power to find differences. Younger oncologists (< 50 years) and clinicians participating in three or more Multidisciplinary Team Meetings were more likely to routinely or occasionally use CPGs. Perceived barriers and facilitators were identified. Thematic analysis was conducted on open-text responses. Results were integrated with previous interview findings and presented in a thematic, conceptual matrix. Most barriers and facilitators identified earlier were corroborated by survey results, with minor discordance. Identified barriers and facilitators require further exploration within a larger sample to assess their perceived impact on cancer treatment CPG adherence in Australia, as well as to inform future CPG implementation strategies. This research was Human Research Ethics Committee approved (2019/ETH11722 and 52019568810127, ID:5688)

Relational autonomy in breast diseases care: a qualitative study of contextual and social conditions of patients’ capacity for decision-making

Abstract Background A relational approach to autonomy refers to the way in which social conditions and relationships shape a person’s self-identity and capacity in decision-making. This article provides an empirical account of how treatment choices for women undergoing breast diseases care are fostered within the dynamics of their relationships with clinicians, family members, and other aspects of their social environment. Methods This qualitative study recruited ten women undergoing treatment at a breast programme, and eight clinicians supporting their care, in a private teaching hospital in New South Wales, Australia. Fourteen patient-clinician consultation observations and 17 semi-structured interviews were conducted. Schema analysis of interview transcripts were undertaken by a team of researchers and corroborated by observational fieldnotes. Results Relational identities of patients influenced the rationale for treatment decision-making. Patients drew on supportive resources from family and medical advice from clinicians to progress with treatment goals. While clinicians held much social power over patients as the medical experts, patients highlighted the need for clinicians to earn their trust through demonstrated professionalism. Information exchange created a communicative space for clinicians and patients to negotiate shared values, promoting greater patient ownership of treatment decisions. As treatment progressed, patients’ personal experiences of illness and treatment became a source of self-reflection, with a transformative impact on self-confidence and assertiveness. Conclusion Patients’ confidence and self-trust can be fostered by opportunities for communicative engagement and self-reflection over the course of treatment in breast disease, and better integration of their self-identity and social values in treatment decisions

Clinical practice guideline adherence in oncology: A qualitative study of insights from clinicians in Australia.

BackgroundThe burden of cancer is large in Australia, and rates of cancer Clinical Practice Guideline (CPG) adherence is suboptimal across various cancers.MethodsThe objective of this study is to characterise clinician-perceived barriers and facilitators to cancer CPG adherence in Australia. Semi-structured interviews were conducted to collect data from 33 oncology-focused clinicians (surgeons, radiation oncologists, medical oncologists and haematologists). Clinicians were recruited in 2019 and 2020 through purposive and snowball sampling from 7 hospitals across Sydney, Australia, and interviewed either face-to-face in hospitals or by phone. Audio recordings were transcribed verbatim, and qualitative thematic analysis of the interview data was undertaken. Human research ethics committee approval and governance approval was granted (2019/ETH11722, #52019568810127).ResultsFive broad themes and subthemes of key barriers and facilitators to cancer treatment CPG adherence were identified: Theme 1: CPG content; Theme 2: Individual clinician and patient factors; Theme 3: Access to, awareness of and availability of CPGs; Theme 4: Organisational and cultural factors; and Theme 5: Development and implementation factors. The most frequently reported barriers to adherence were CPGs not catering for patient complexities, being slow to be updated, patient treatment preferences, geographical challenges for patients who travel large distances to access cancer services and limited funding of CPG recommended drugs. The most frequently reported facilitators to adherence were easy accessibility, peer review, multidisciplinary engagement or MDT attendance, and transparent CPG development by trusted, multidisciplinary experts. CPGs provide a reassuring framework for clinicians to check their treatment plans against. Clinicians want cancer CPGs to be frequently updated utilising a wiki-like process, and easily accessible online via a comprehensive database, coordinated by a well-trusted development body.ConclusionFuture implementation strategies of cancer CPGs in Australia should be tailored to consider these context-specific barriers and facilitators, taking into account both the content of CPGs and the communication of that content. The establishment of a centralised, comprehensive, online database, with living wiki-style cancer CPGs, coordinated by a well-funded development body, along with incorporation of recommendations into point-of-care decision support would potentially address many of the issues identified

European surveillance for enterovirus D68 during the emerging North-American outbreak in 2014

BACKGROUND: In August and September 2014, unexpected clusters of enterovirus-D68 (EV-D68) infections associated with severe respiratory disease emerged from North-America. In September, the European Centre for Disease Prevention and Control (ECDC) asked European countries to strengthen respiratory sample screening for enterovirus detection and typing in cases with severe respiratory presentations. OBJECTIVES: To provide a detailed picture of EV-D68 epidemiology in Europe by conducting a retrospective and prospective laboratory analysis of clinical specimens. STUDY DESIGN: An initiative supported by the European Society for Clinical Virology (ESCV) and ECDC was launched to screen for EV-D68 in respiratory specimens between July 1st and December 1st 2014 in Europe and to sequence the VP1 region of detected viruses for phylogenetic analytic purposes. RESULTS: Forty-two institutes, representing 51 laboratories from 17 European countries, analyzed 17,248 specimens yielding 389 EV-D68 positive samples (2.26%) in 14 countries. The proportion of positive samples ranged between 0 and 25% per country. These infections resulted primarily in mild respiratory disease, mainly detected in young children presenting with wheezing and in immuno-compromised adults. The viruses detected in Europe are genetically very similar to those of the North-American epidemic and the majority (83%) could be assigned to clade B. Except for 3 acute flaccid paralysis (AFP) cases, one death and limited ICU admissions, no severe cases were reported. CONCLUSIONS: The European study showed that EV-D68 circulated in Europe during summer and fall of 2014 with a moderate disease burden and different pathogenic profile compared to the North-American epidemic