The challenges with managing polycystic ovary syndrome : A qualitative study of women’s and clinicians’ experiences

Funding The study was funded by the University of Sydney Lifespan Research Network and the National Health and Medical Research Council (NHMRC) Program Grant (APP1113532), Australia. Acknowledgements We gratefully acknowledge the women and clinicians who participated in the study, and the project’s PCOS consumers: Nicola Smith, Wendy Liang and Belinda Snape. We recognise that non-binary people and people of various gender identities can be affected by PCOS. All participants with PCOS identified as women in the current study, so for the purposes of this paper, the term ‘women’ will be used throughout.Peer reviewedPostprin

The challenges with managing polycystic ovary syndrome : A qualitative study of women’s and clinicians’ experiences

Funding The study was funded by the University of Sydney Lifespan Research Network and the National Health and Medical Research Council (NHMRC) Program Grant (APP1113532), Australia. Acknowledgements We gratefully acknowledge the women and clinicians who participated in the study, and the project’s PCOS consumers: Nicola Smith, Wendy Liang and Belinda Snape. We recognise that non-binary people and people of various gender identities can be affected by PCOS. All participants with PCOS identified as women in the current study, so for the purposes of this paper, the term ‘women’ will be used throughout.Peer reviewedPostprin

Addressing Health Literacy in Patient Decision Aids:An Update from the International Patient Decision Aid Standards

BACKGROUND: There is increasing recognition of the importance of addressing health literacy in patient decision aid (PtDA) development. PURPOSE: An updated review as part of IPDAS 2.0 examined the extent to which PtDAs are designed to meet the needs of low health literacy/disadvantaged populations. DATA SOURCES: Reference list of Cochrane review of randomised controlled trials (RCTs) of PtDAs (2014, 2017 and upcoming 2021 versions). STUDY SELECTION: RCTs that assessed the impact of PtDAs on low health literacy or other disadvantaged groups (i.e. ≥50% participants from disadvantaged groups and/or subgroup analysis in disadvantaged group/s). DATA EXTRACTION: Two researchers independently extracted data into a standardized form including PtDA development and evaluation details. We searched online repositories and emailed authors to access PtDAs to verify reading level, understandability and actionability. DATA SYNTHESIS: Twenty-five out of 213 RCTs met inclusion criteria illustrating that only 12% of studies addressed the needs of low health literacy or other disadvantaged groups. Reading age was calculated in 8/25 studies (33%), which is recommended in previous IPDAS guidelines. We accessed and independently assessed 11 PtDAs. None were written at 6(th) grade level or below. Ten PtDAs met the recommended threshold for understandability, but only 5 met the recommended threshold for actionability. We also conducted a post-hoc subgroup meta-analysis and found that knowledge improvements after receiving a PtDA were greater in studies that reported using strategies to reduce cognitive demand in PtDA development compared to studies that did not (Chi(2)=14.11, p=0.0002, I(2)=92.9%). LIMITATIONS: We were unable to access 13 out of 24 PtDAs. CONCLUSIONS: Greater attention to health literacy and disadvantaged populations is needed in the field of PtDAs to ensure equity in decision support

Exploring the expectations, experiences and tensions of refugee patients and general practitioners in the quality of care in general practice.

BACKGROUND: Refugees and asylum seekers arrive in the Australian community with complex health needs and expectations of healthcare systems formed from elsewhere. Navigating the primary healthcare system can be challenging with communication and language barriers. In multicultural societies, this obstacle may be removed by accessing language-concordant care. Emerging evidence suggests language-concordance is associated with more positive reports of patient experience. Whether this is true for refugees and asylum seekers and their expectation of markers of quality patient-centred care (PCC) remains to be explored. This study aimed to explore the expectations around the markers of PCC and the impacts of having language-concordant care in Australian primary healthcare. METHODS: We conducted semi-structured individual in-language (Arabic, Dari, and Tamil) remote interviews with 22 refugee and asylum seekers and 9 general practitioners (GPs). Interview transcripts were coded inductively and deductively, based on the research questions, using Thematic Analysis. Extensive debriefing and discussion took place within the research team throughout data collection and analysis. RESULTS: Community member expectations of markers of PCC are constantly evolving and adapting based on invisible and visible actions during clinical encounters. Challenges can occur in the clinical encounter when expectations are 'unsaid' or unarticulated by both community members and GPs due to the assumption of shared understanding with language concordant care. Expectations of what constitutes satisfactory, quality PCC are dynamic outcomes, which are influenced by prior and current experiences of healthcare. CONCLUSION: This study highlights the importance of understanding that language concordant care does not always support aligned expectations of the markers of quality PCC between community members and their GP. We recommend that GPs encourage community members to provide explicit descriptions about how their prior experiences have framed their expectations of what characterizes quality PCC. In addition, GPs could develop a collaborative approach, in which they explain their own decision-making processes in providing PCC to refugees and asylum seekers. PATIENT OR PUBLIC CONTRIBUTION: Bilingual researchers from multicultural backgrounds and experience working with people from refugee backgrounds were consulted on study design and analysis. This study included individuals with lived experiences as refugees and asylum seekers and clinicians as participants

The future of allergic rhinitis management : a partnership between health care professionals and patients

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Integrating the Choosing Wisely 5 Questions into family meetings in the intensive care unit: A randomized controlled trial Investigating the effect on family perceived involvement in decision-making

Family members often act as surrogate decision makers for patients in the intensive care unit (ICU). The use of printed prompts may assist with families feeling empowered to fulfill this role. Prospective, randomized controlled trial in 3 ICUs in Western Australia. In the intervention arm, families received the Choosing Wisely 5 questions as printed prompts prior to a family meeting, and the control arm did not receive prompts. The primary outcome was family perceived involvement in decision-making. Outcomes were measured using a survey. Sixty families participated in the study. The majority of families (87.1% control, 79.3% intervention; P = .334) reported feeling “very included” in decision-making. There was no difference in secondary outcomes, including minimal uptake of the questions by the intervention arm. This has been the first randomized trial evaluating the use of a decision-making tool for families in the ICU. Despite ceiling effects in outcome measures, these results suggest room for future study of the Choosing Wisely 5 questions in the ICU

Development and field testing of a consumer shared decision-making training program for adults with low literacy

ObjectiveGiven the scarcity of shared decision-making (SDM) interventions for adults with low literacy, we created a SDM training program tailored to this population to be delivered in adult education settings.MethodsFormative evaluation during program development included a review of the problem and previous efforts to address it, qualitative interviews with the target population, program planning and field testing.ResultsA comprehensive SDM training program was developed incorporating core SDM elements. The program aimed to improve students’ understanding of SDM and to provide them with the necessary skills (understanding probabilistic risks and benefits, personal values and preferences) and self-efficacy to use an existing set of questions (the AskShareKnow questions) as a means to engage in SDM during healthcare interactions.ConclusionsThere is an ethical imperative to develop SDM interventions for adults with lower literacy. Generic training programs delivered direct-to-consumers in adult education settings offer promise in a national and international environment where too few initiatives exist.Practice implicationsFormative evaluation of the program offers practical insights into developing consumer-focused SDM training. The content of the program can be used as a guide for future efforts to engage consumers in SDM