More than just ticking a box how patient and public involvement improved the research design and funding application for a project to evaluate a cycling intervention for hip osteoarthritis.

PLAIN ENGLISH SUMMARY: Involving patients and the public in research helps to ensure that research remains relevant, and has an impact on the people it aims to benefit. Funding bodies now require patients and the public to be involved at all stages of research. Patients and members of the public were involved from the outset in research into a cycling and education programme for hip osteoarthritis. A group discussion took place with six participants from a trial of the programme. The group provided feedback on several areas including the relevance of the research, how the researchers proposed to recruit patients, the research design, the programme itself (including what they liked/didn't like about it), and how the researchers could publicise the research findings. The feedback received was invaluable, and helped shape the entire research project and funding application. The cycling and education programme has been extended in line with comments received from the group. They also helped identify the best way of gathering information from research participants and had suggestions for sharing the results, both of which were incorporated into the funding application. Often involving patients and the public in research can be seen as a 'tick box' exercise. However, this example shows how crucial involving patients and the public in research design is. It also shows how the funding application was made stronger as a result of patient input. Researchers should be encouraged to work closely with patients and the public to ensure their research is of the highest quality. ABSTRACT: Background Involving patients and the public in research is an essential activity to ensure relevant, accessible, and appropriate research. There is increasing obligation from funding bodies on researchers to have well thought through plans for involving the public, and indeed it is often a condition for funding. Patient and public involvement activity in this project was conducted to inform a funding application to investigate the effectiveness of a cycling and education intervention in the treatment of hip osteoarthritis. Methods Six participants from a feasibility programme of the intervention attended a two-hour patient and public involvement consultation group to provide feedback on various aspects of the proposed research and intervention. During the consultation group, two independent facilitators followed a detailed plan formulated with the research team. Feedback was validated by the attendees via email following the consultation, and a report was issued to the research team. Further feedback on subsequent changes was sought via email and telephone with members of a Patient Advisory Group. Results The patient and public involvement consultation group provided invaluable feedback and suggestions which impacted on the design and quality of the research project and the intervention. Key changes to the intervention included extending the duration of the cycling programme from six to eight weeks, and inclusion of an exercise diary to promote adherence to the intervention. Key feedback regarding the design of the research and funding application included suggestions for methods of dissemination, and confirmation of the primary outcome measure. Conclusions Patient and public involvement was crucial to the design of the proposed research and intervention. It informed many aspects of the research design and made the funding application stronger as a result. Involving patients and the public in research is much more than an obligation, or 'tick box' exercise. It can change and improve research quality, which is crucial when answering questions that are meaningful and important to patients, and which leads to increased impact. Collaboration with patients and the public should be planned and reported from the conception of a research idea where the impact of such input can be considerable.

Gender-stereotyping and cognitive sex differences in mixed- and same-sex groups.

Sex differences in specific cognitive abilities are well documented, but the biological, psychological, and sociocultural interactions that may underlie these differences are largely unknown. We examined within a biopsychosocial approach how gender stereotypes affect cognitive sex differences when adult participants were tested in mixed- or same-sex groups. A total of 136 participants (70 women) were allocated to either mixed- or same-sex groups and completed a battery of sex-sensitive cognitive tests (i.e., mental rotation, verbal fluency, perceptual speed) after gender stereotypes or gender-neutral stereotypes (control) were activated. To study the potential role of testosterone as a mediator for group sex composition and stereotype boost/threat effects, saliva samples were taken before the stereotype manipulation and after cognitive testing. The results showed the typical male and female advantages in mental rotation and verbal fluency, respectively. In general, men and women who were tested in mixed-sex groups and whose gender stereotypes had not been activated performed best. Moreover, a stereotype threat effect emerged in verbal fluency with reduced performance in gender stereotyped men but not women. Testosterone levels did not mediate the effects of group sex composition and stereotype threat nor did we find any relationship between testosterone and cognitive performance in men and women. Taken together, the findings suggest that an interaction of gender stereotyping and group sex composition affects the performance of men and women in sex-sensitive cognitive tasks. Mixed-sex settings can, in fact, increase cognitive performance as long as gender-stereotyping is prevented.

The Determinants of Dementia After Stroke (DEDEMAS) Study: protocol and pilot data.

RATIONALE: About 20% of stroke patients develop dementia within a few months after their event, but the determinants and mechanisms of poststroke dementia are insufficiently understood. AIMS: To identify and characterize the determinants of cognitive impairment poststroke. DESIGN: Observational prospective study in patients with acute stroke and no prior dementia. Six hundred subjects will be characterized by detailed interview, standardized clinical examinations, biometric measures (intima-media thickness, waist-hip ratio, and ankle-brachial index), multimodal imaging (magnetic resonance imaging, fluorodeoxyglucose-positron emission tomography (FDG-PET), amyloid-positron emission tomography (amyloid-PET), and retinal imaging), analysis of biomarkers derived from blood and cerebrospinal fluid, and detailed cognitive testing at repeat time points. Patients will be followed for five-years with a total of five personal visits and three telephone interviews. STUDY OUTCOMES: Primary end-point is the occurrence of poststroke dementia. Secondary end-points include poststroke cognitive impairment-no dementia, stroke recurrence, and death. Predictive factors for poststroke dementia will be identified by multiple Cox proportional-hazards model. RESULTS: Baseline characteristics of the first 71 patients (study inclusion between May 2011 and August 2012) are as follows: median age, 70 years (interquartile range, 65-75); female gender, 25 (35%); median National Institutes of Health Stroke Scale at admission, 2 (1-4); and etiological stroke subtypes according to TOAST classification, 15% large artery disease, 18% small vessel disease, 35% cardioembolic, and 32% undetermined or multiple competing etiologies. DISCUSSION: This study will provide insights into the mechanisms of poststroke dementia and hold the potential to identify novel diagnostic markers and targets for preventive therapies. The study is registered at http://www.clinicaltrials.gov (NCT01334749) and will be extended as a multicenter study starting 2013.

Role ambiguity, role conflict, or burnout: are these areas of concern for Australian palliative care volunteers? Pilot study results.

OBJECTIVE: To determine whether burnout, role ambiguity, or conflict affects Australian hospice volunteers. METHOD: Hospice volunteers (n = 120) were invited to participate in this pilot survey. Quantitative data were analyzed using descriptive statistics, while the free-text responses were analyzed using thematic content analysis. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Guidelines have been used to report this data. RESULTS: A total of 97 participants completed the survey. The majority were middle-aged women who had been palliative care volunteers for more than 7 years and volunteered 14 hours/week (median). Participants reported low levels of role ambiguity (x = 8.4, standard deviation [SD] ±3.0) and conflict (x = 9.8, SD ±3.4) and described enjoying their volunteering and having no symptoms of burnout (76%). SIGNIFICANCE: Active hospice volunteers report low levels of role ambiguity, conflict, and burnout. Adopting a range of self-care strategies and working within a structured volunteer program appear to be important protective factors.