Recommendations for accelerating open preprint peer review to improve the culture of science.

Peer review is an important part of the scientific process, but traditional peer review at journals is coming under increased scrutiny for its inefficiency and lack of transparency. As preprints become more widely used and accepted, they raise the possibility of rethinking the peer-review process. Preprints are enabling new forms of peer review that have the potential to be more thorough, inclusive, and collegial than traditional journal peer review, and to thus fundamentally shift the culture of peer review toward constructive collaboration. In this Consensus View, we make a call to action to stakeholders in the community to accelerate the growing momentum of preprint sharing and provide recommendations to empower researchers to provide open and constructive peer review for preprints.

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health.

BACKGROUND: In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period. METHODS: We conducted year-end surveys and interviews of group members to understand parents' perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically. RESULTS: Year-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group's purpose, offering sufficient context for discussion items, and providing feedback about how members' input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group's current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group's membership and an interest in hearing more about how the research program's activities fit into the broader healthcare system and their impacts on health outcomes. CONCLUSIONS: Our experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs.

We developed a parent advisory group in 2016 to support our research program in knowledge translation (KT, i.e., sharing research in accessible ways to inform decision-making) for child health. The purpose of the group is to involve parents in co-developing, evaluating, and sharing KT tools (e.g., videos, infographics). The group has also worked with researchers to inform methods and provide input on research projects and products. The group has been running for seven years and has involved different types of evaluations, including parent surveys and interviews. Parents had generally positive views of their experience with the group (including the group's management, interactions with researchers, etc.) and their responses mostly improved over the years. Based on parents' feedback, we made changes to improve the group's operations, such as changing the frequency and location of meetings, regular communications about the group's purpose, offering more context and time for individual discussion items, and providing feedback to parents about how their input was used. Parents regularly expressed a desire for more diversity in the group's membership. They also expressed an interest in hearing more about how the research program fit into the broader healthcare system and impacts on health outcomes. We have learned that it takes a large amount of time, effort, and funding to run the group; however, the parent contributions have been valuable and wide-reaching. We feel that the evaluations and responsive changes to the group over time have been essential to sustain and foster meaningful engagement and achieve the group's objectives.

Engaging youth and parents in clinical pediatric research: A case-based example.

Background: Youth and parent engagement is a key component of clinical research. There are many ways to actively and meaningfully engage youth and parents as integral members of research teams, for example, through ad-hoc committees, advisory councils, or as co-leads on projects. When youth and parents are actively and meaningfully engaged in research projects, they share knowledge from their lived experiences to improve the quality and relevance of research. Methods: We describe a case-based example of engaging youth and parent research partners when co-designing a questionnaire to assess preferences for pediatric headache treatments, from both a researcher and youth/parent perspective. We also summarize best practices in patient and family engagement from the literature and pertinent guidelines to assist researchers with integrating patient and family engagement into their studies. Results: As researchers, we felt that the integration of a youth and parent engagement plan into our study significantly altered and strengthened questionnaire content validity. We encountered challenges throughout the process and detailed these experiences to help educate others about challenge mitigation and best practices in youth and parent engagement. As youth and parent partners, we felt that engaging in the process of questionnaire development was an exciting and empowering opportunity, and that our feedback was valued and integrated. Conclusions: By sharing our experience, we hope to catalyze thought and discussion around the importance of youth and parent engagement in pediatric research, with the goal of stimulating more appropriate, relevant, and high-quality pediatric research and clinical care in the future.

Cross-cultural validation of the Italian Spine Youth Quality of Life questionnaire: the ISYQOL international.

BACKGROUND: Adolescent idiopathic scoliosis and its treatments can severely impact health-related quality of life. The Italian Spine Youth Quality of Life (ISYQOL) questionnaire, initially developed in Italian and tested on Italian people, was created to measure quality of life in young persons with spine changes. ISYQOL was created using the Rasch analysis, a modern psychometric technique for questionnaires' assessment and development, which showed that the ordinal scores of the ISYQOL Italian version provide sound quality of life measures. AIM: The current work aims to evaluate the cross-cultural equivalence of the ISYQOL questionnaire in seven different countries. DESIGN: Cross-sectional, international, multi-centre study. SETTING: Outpatient clinic. POPULATION: Five hundred fifty persons with adolescent idiopathic scoliosis from English Canada, French Canada, Greece, Italy, Spain, Poland, and Türkiye. METHODS: The ISYQOL Italian version was translated into six languages with the forward-backwards procedure. The conceptual equivalence of the items' content was verified, and any inconsistency was resolved by consensus. The Rasch analysis was used here to evaluate that ISYQOL translations retained the good measurement properties of the Italian version of the questionnaire. In addition, the Differential Item Functioning (DIF) was checked to assess the psychometric equivalence of the ISYQOL items in patients from different countries. RESULTS: Four items of the translated ISYQOL were dropped from the questionnaire since they did not contribute to measuring due to their poor fit to the model of Rasch. Seven items were affected by DIF for nationality, a finding pointing out that these items do not work the same (i.e. are not equivalent) in the different countries. Thanks to the Rasch analysis, the DIF for nationality was amended, and ISYQOL International was eventually obtained. CONCLUSIONS: ISYQOL International returns interval quality of life measures in people with adolescent idiopathic scoliosis with high cross-cultural equivalence in the tested countries. CLINICAL REHABILITATION IMPACT: Rigorous testing showed that ISYQOL International ordinal scores return quality of life measures cross-culturally equivalent in English and French Canada, Greece, Italy, Spain, Poland, and Türkiye. A new, psychometrically sound patient-reported outcome measure is thus available in rehabilitation medicine to measure health-related quality of life in idiopathic scoliosis.

Meeting the Needs of Parents of Children With Scoliosis: A Qualitative Descriptive Study.

Needs of parents with children with scoliosis are complex and depend on their child's treatments. The purpose of this study was to identify needs of parents with children with scoliosis. This qualitative description involved interviews with parents of children at various stages of treatment. A convenience, then purposeful sample of 16 parents (12 mothers, two fathers, and two stepfathers) was interviewed; interviews were transcribed and analyzed using thematic analysis. Parents' needs included: Needing reliable medical information; Desiring information on complementary treatments; Wanting help in supporting and advocating for their child; Needing to protect the child and family; and Seeking connection and support. Although many parents' needs are being met, this study recommends a nursing role aimed at providing parents with reliable medical information, discussing alternative treatments, assisting parents in their role of supporting their child, helping parents in their advocacy efforts, and referring parents to appropriate connections.

Timelines for returning to physical activity following pediatric spinal surgery: recommendations from the literature and preliminary data.

OBJECTIVE: Participation in physical activity and sports is known to have positive implications for physical health, and for social and emotional wellbeing of children. Following corrective spinal surgery for scoliosis, the timeline for the return to activities and sports varies from surgeon to surgeon and from location to location, and return to activities can be limited due to pain, fear, and decreased flexibility. It is critical that patients know best-practice guidelines, and it is equally critical that medical professionals know whether their patients are following those guidelines. This paper includes a summary of recommendations published in the literature, and a pilot study to address a gap in the literature on determining how long, post-surgery, adolescents with idiopathic scoliosis waited before returning to various self-care and physical activities, and what factors influenced return to activities. We used a mixed-method approach that involved two phases: a questionnaire (n = 8), and subsequent interviews of some participants (n = 3). Participants were ages 14-17 (M = 15.4) and had had posterior instrumentation and fusion for scoliosis in the past 2 years. RESULTS: Some patients were cautious about return to activities, either because of emotional or medical reasons. However, in many instances, participants returned to physical activities earlier than was recommended, primarily for emotional and social reasons.

"It's no big deal": adolescents with congenital heart disease.

Improved survival rates for congenital heart disease (CHD) have increasing numbers requiring lifelong specialized health care. In this interpretive description, interview data were analyzed to understand how adolescents with CHD describe everyday life and relate to questions about quality of life. Most viewed themselves as normal, their CHD something that they situated into the foreground or background of their lives as it suited their needs. They spoke of quality-of-life issues in a concrete manner focusing on physical activity limitations and their need to fit in. These findings can direct interventions for adolescents with CHD for transition to adulthood.