What factors are associated with posttraumatic growth in head and neck cancer carers?

PurposeResearchers have recently called for more work to be conducted on positive outcomes and head and neck cancer. The purpose of this study was to investigate the factors associated with posttraumatic growth in head and neck cancer caregivers.Methods and sample197 carers were surveyed. A descriptive cross-sectional survey design was used.ResultsIn multivariate analysis the following factors were statistically significantly associated with increased posttraumatic growth: social support, longer time since diagnosis, increased worry about cancer and increased financial stress and strain stemming from caring.ConclusionsWhile HNC carers in the post-treatment phase of the illness trajectory can experience considerable psychological burdens, this study suggests that these burdens can lead some carers to experience growth and change and an expanded sense of themselves and their social worlds. Implications for nursing practice are discussed

Patient-doctor agreement on recall of clinical trial discussion across cultures

Background The purpose was to investigate patient-doctor agreement on clinical trial discussion cross-culturally. Methods In the International Breast Cancer Study Group Trial 33-03 on shared decision-making for early breast cancer in Australian/New Zealand (ANZ) and Swiss/German/Austrian (SGA) centers, doctor and patient characteristics plus doctor stress and burnout were assessed. Within 2 weeks post-consultation about treatment options, the doctor and patient reported independently, whether a trial was discussed. Odds ratios of agreement for covariables were estimated by generalized estimating equations for each language cohort, with doctor as a random effect. Results In ANZ, 21 doctors and 339 patients were eligible; in SGA, 41 doctors and 427 patients. In cases where the doctor indicated ‘no trial discussed', 82% of both ANZ and SGA patients agreed; if the doctor indicated ‘trial discussed', 50% of ANZ and 38% of SGA patients agreed, respectively. Factors associated with higher agreement were: low tumor grade and fewer patients recruited into clinical trials in SGA; public institution, patient born in ANZ (versus other), higher doctor depersonalization and personal accomplishment in ANZ. Conclusion There is discordance between oncologists and their patients regarding clinical trial discussion, particularly when the doctor indicates that a trial was discussed. Factors contributing to this agreement vary by cultur

Decision aids for breast cancer surgery: a randomised controlled trial

In Chinese women who require breast cancer surgery, use of a decision aid booklet reduces decisional conflict, treatment decision-making difficulty, and post-surgery decision regret. Decision aids should be available as part of the routine clinical service, specifically to support post-consultation decision making.published_or_final_versio

Advance care planning in patients with incurable cancer: Study protocol for a randomised controlled trial

Introduction: There is limited evidence documenting the effectiveness of Advance Care Planning (ACP) in cancer care. The present randomised trial is designed to evaluate whether the administration of formal ACP improves compliance with patients' end-of-life (EOL) wishes and patient and family satisfaction with care. Methods and analysis: A randomised control trial in eight oncology centres across New South Wales and Victoria, Australia, is designed to assess the efficacy of a formal ACP intervention for patients with cancer. Patients with incurable cancer and an expected survival of 3-12 months, plus a nominated family member or friend will be randomised to receive either standard care or standard care plus a formal ACP intervention. The project sample size is 210 patient-family/friend dyads. The primary outcome measure is family/friendreported: (1) discussion with the patient about their EOL wishes and (2) perception that the patient's EOL wishes were met. Secondary outcome measures include: documentation of and compliance with patient preferences for medical intervention at the EOL; the family/friend's perception of the quality of the patient's EOL care; the impact of death on surviving family; patient-family and patient-healthcare provider communication about EOL care; patient and family/ friend satisfaction with care; quality of life of patient and family/friend subsequent to trial entry, the patient's strength of preferences for quality of life and length of life; the costs of care subsequent to trial entry and place of death. Ethics and dissemination: Ethical approval was received from the Sydney Local Health District (RPA Zone) Human Research Ethical Committee, Australia (Protocol number X13-0064). Study results will be submitted for publication in peer-reviewed journals and presented at national and international conferences. Trial registration number: Pre-results; ACTRN12613001288718

Structure of the Mg-Chelatase Cofactor GUN4 Reveals a Novel Hand-Shaped Fold for Porphyrin Binding

In plants, the accumulation of the chlorophyll precursor Mg-protoporphyrin IX (Mg-Proto) in the plastid regulates the expression of a number of nuclear genes with functions related to photosynthesis. Analysis of the plastid-to-nucleus signaling activity of Mg-Proto in Arabidopsis thaliana led to the discovery of GUN4, a novel porphyrin-binding protein that also dramatically enhances the activity of Mg-chelatase, the enzyme that synthesizes Mg-Proto. GUN4 may also play a role in both photoprotection and the cellular shuttling of tetrapyrroles. Here we report a 1.78-Å resolution crystal structure of Synechocystis GUN4, in which the porphyrin-binding domain adopts a unique three dimensional fold with a “cupped hand” shape. Biophysical and biochemical analyses revealed the specific site of interaction between GUN4 and Mg-Proto and the energetic determinants for the GUN4 • Mg-Proto interaction. Our data support a novel protective function for GUN4 in tetrapyrrole trafficking. The combined structural and energetic analyses presented herein form the physical-chemical basis for understanding GUN4 biological activity, including its role in the stimulation of Mg-chelatase activity, as well as in Mg-Proto retrograde signaling

A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent.

BACKGROUND: We aimed to synthesise data on issues related to stakeholder perceptions of consent for the use of secondary data. To better understand the current literature available, we conducted a systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data. METHODS: EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility and two authors were involved in the full-text review process. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative studies. RESULTS: This paper focuses on a subset of 47 articles identified from the wider search and focuses on the issue of consent. Issues related to privacy, trust and transparency, and attitudes of healthcare professionals and researchers to secondary use and sharing of data have been dealt with in previous publications. Studies included a total of 216,149 respondents. Results indicate that respondents are generally supportive of using health data for research, particularly if the data is de-identified or anonymised. The requirement by participants to obtain consent prior to the use of health data for research was not universal, nor is the requirement for this always supported by legislation. Many respondents believed that either no consent or being informed of the research, but not providing additional consent, were sufficient. CONCLUSIONS: These results indicate that individuals should be provided with information and choice about how their health data is used and, where feasible, a mechanism to opt-out should be provided. To increase the acceptability of using health data for research, health organisations and data custodians must provide individuals with concise information about data protection mechanisms and under what circumstances their data may be used and by whom. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018110559 (update June 2020)

A systematic literature review of researchers' and healthcare professionals' attitudes towards the secondary use and sharing of health administrative and clinical trial data.

A systematic literature review of researchers and healthcare professionals' attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted using electronic data searching. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design, or disease setting. Two authors were involved in all stages of the review process; conflicts were resolved by consensus. Data was extracted independently using a pre-piloted data extraction template. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Eighteen eligible articles were identified, and articles were categorised into four key themes: barriers, facilitators, access, and ownership; 14 subthemes were identified. While respondents were generally supportive of data sharing, concerns were expressed about access to data, data storage infrastructure, and consent. Perceptions of data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region. Young researchers were less willing to share data; they were willing to share in circumstances where they were acknowledged. While there is a general consensus that increased data sharing in health is beneficial to the wider scientific community, substantial barriers remain. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018110559

A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency.

We aimed to synthesise data on issues related to stakeholder perceptions of privacy, trust, and transparency in use of secondary data. A systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted. EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO, and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility, and two authors were involved in the full text review process. Data was extracted using a pre-piloted data extraction template by one author and checked by another. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative and quantitative studies. This paper focuses on a subset of 35 articles identified from the wider search which focus on issues of privacy, trust, and transparency. Studies included a total of 56,365 respondents. Results of this systematic literature review indicate that while respondents identified advantages in sharing health data, concerns relating to trust, transparency, and privacy remain. Organisations collecting health data and those who seek to share data or undertake secondary data analysis should continue to develop trust, transparency, and privacy with healthcare consumers through open dialogue and education. Consideration should be given to these issues at all stages of data collection including the conception, design, and implementation phases. While individuals understand the benefits of health data sharing for research purposes, ensuring a balance between public benefit and individual privacy is essential. Researchers and those undertaking secondary data analysis need to be cognisant of these key issues at all stages of their research. Systematic review registration: PROSPERO registration number CRD42018110559 (update June 2020)