Ethical dilemmas at both the individual and structural level are part of the daily work of midwives and gender inequality and injustice can affect women’s sexual and reproductive health. Mainstream bioethical theory has been criticized for neglecting women’s issues. To ensure women’s experiences are addressed, a gender lens on ethics is crucial.This study develops a theory model by exploring ethical dilemmas related to gender in the context of maternity care from the perspective of midwifery science and feminist ethics.The research strategy followed a coherent stepwise approach: literature search, thematic analysis, elaboration of a gender ethics protocol, and the integration of various components into a preliminary gender ethics model for midwifery.A literature search was performed using Scopus and Web of Science to identify ethical dilemmas in maternity care linked to gender and power. The search of articles published between 1996 and 2019 returned 61 abstracts. These abstracts were screened and assigned one of the following themes: The Midwifery Profession, The Rights of the Woman, Fetal Rights Dominate, and Medicalization of Pregnancy and Childbirth. A tentative gender ethics frame was developed and tested on two articles on abortion, one from Denmark and one from Japan. The protocol facilitated the gender analysis of ethical dilemmas related to abortion, which were related to the imbalance of power relations in health care. In the final step, we synthesized the dimensions of gender and power in a gender ethics model for midwifery.The gender ethics protocol developed revealed gendered dimensions of ethical dilemmas in midwifery. This gender analysis adds to the understanding of the “do no harm” principle by revealing assumptions and stereotypes that promote unequal power relations. The gender ethics model is an innovative approach that envisions and exposes power imbalance at the micro, meso, and macro levels.The protocol could improve gender competence among researchers, midwives/professionals, and midwifery students throughout the world. As gender inequity, gender inequality, and oppression infuse dimensions in all human cultures and societies, not the least in midwifery practice where the layers of injustice affect women during pregnancy and birth in high-, middle-, and low-income countries, the time has come to renew the perspectives of normative ethics. In this study, we explore gender ethical dilemmas unique to maternity care from the perspective of midwifery science and feminist ethics. A literature search uncovered ethical dilemmas in midwifery, and four broad themes were identified: Midwifery Profession, Rights of the Woman, Fetal Rights Dominate, and Medicalization of Pregnancy and Childbirth. Next, we developed a gender ethics protocol suitable for providing gender ethical interpretations of results. The protocol was tested and refined using two articles (one from the Denmark and one from Japan) that address ethical dilemmas of abortion care. The pilot analysis indicates that the autonomy of midwives and their scope of practice might be constrained and that the obstetric medicalized/authoritative knowledge still plays a dominate role in maternity practice. Here, we present an elaborate model, gender ethics model for midwifery (GEMM), developed for midwifery science that can be further refined. The model challenges the views of maternity care and contributes to a deeper understanding of how fluid concepts such as gender and power circulate and influence women’s and birthing person’s sexual and reproductive health. Problem or issueLayers of injustice affect women during pregnancy and birth in both high-, middle-, and low-income countries. The time has come to renew the perspectives of normative ethics.What is already known?Globally, ethical dilemmas at both the individual and structural levels pervade the daily work of midwives, but ethical research that includes gender theory in midwifery science is limited.What this paper addsHere, we present a gender ethics protocol and develop an innovative gender theory ethics model for midwifery to improve gender competence among researchers, midwives/professionals, and midwifery students. Globally, ethical dilemmas at both the structural and individual level pervade the daily work of midwives . StructuAfter World War II, renewed research ethics codes were developed for various research areas . In 1947Theories of ethics are important in many sectors of society, including midwifery science. Ethical perspectives pervade all parts of professional midwifery and research. The International Confederation of Midwives (ICM), American College of Nurse-Midwives (ACNM), Midwives Alliance of North America (MANA), and National Association of Certified Professional Midwives (NACPM) provide the basic ethical codes for professional midwives globally . These cAs the current foundation of ethics focuses on ensuring human rights, it aligns with gender ethics. However, there is a gap in knowledge about gender equality and embedded power dimensions.The ethical codes of conduct for midwives are an integral part of the midwifery profession, where the major principles—professional competence, informed consent, respect for privacy, respect for diversity, respect for women’s values, and respect for women’s self-esteem—can be synthesized and framed as pro-women . From a Midwifery is a gendered profession: most midwives identify as women and care for “other” women’s sexual and reproductive health during the whole life course. However, most midwives still have less power compared to male doctors across cultures as an androcentric view has dominated childbirth . GloballJaggar , criticiarticulate moral critiques of actions and practices that perpetuate women’s subordination;prescribe morally justifiable ways of resisting such actions and practices;envision morally desirable alternatives for such actions and practices; andconsider women’s moral experiences seriously although not uncritically.For Jaggar , a feminFeminist ethics have informed our development of a gender ethics model for midwifery (GEMM), and the theoretical framework reflects our preunderstandings. Acknowledging that this framework takes a European or Anglo-American understanding of gender norms as a base does not mean that we are reifying the West. Discrimination and misogyny are universal issues. Our point of departure is that ethical research has not included gender theory in midwifery science. In this article, we focus on ethical dilemmas in sexual and reproductive health that affect midwives and the women they treat.Our overall aim was to develop a theory model to explore the gender ethical dilemmas unique to maternity care from the perspective of midwifery science and framed by feminist ethics. Specifically, we wanted to develop a gender ethics protocol suitable for analyzing ethical dilemmas and test and refine the gender ethics protocol using two articles about abortion.A literature review was used to identify the available evidence in the field and to point out the contradictions and gaps in the existing knowledge . The firOur search strategy focused on two multidisciplinary databases—Scopus and Web of Science. The Scopus database covers more than 20,000 journals, most from Medline and PubMed, that include caring and social science perspectives. Scopus is the largest abstract and citation database of peer-reviewed literature, which includes scientific journals, books, and conference proceedings. Web of Science includes approximately 12,000 journals, partly unique and partly overlapping journals at Scopus. A librarian at Umeå University assisted in the search. First, we made a broad search in Scopus using the search term Midwife*AND Ethics* for all years up to 2016. This search returned 809 articles. Most of the articles were not specifically about midwives and ethics. Therefore, a search was performed using the search terms Midwife*AND Ethical Dilemmas* for all years. This search returned 58 articles. A second search was performed in Scopus for the years 2017 and 2018, which returned eight articles. To improve the consistency across the report of the review, we refined the search at Web of Science (2019) and found 23 articles.Peer-reviewed quantitative and qualitative articles from the perspectives of midwifery not before 1995 were included. Nine articles from the Scopus searches were excluded: two articles about nursing perspectives, one article with a missing abstract, three articles published before 1995, two articles not in English, and one not relevant for midwifery. When we compared the articles from the Web of Science search with the articles from the Scopus search for duplicates, we found four abstracts in Web of Science that were not published in Scopus. The search also identified 23 articles from the Web of Science of which 17 were duplicates. In addition, one article was excluded because it was in German and one was excluded because it was a review. Therefore, 19 articles in total were excluded. The four abstracts were read and the articles were included. We included the suggested steps in accordance with the different phases identified by Moher et al. , except The literature search, which included articles published between 1996 and 2019, returned 61 abstracts. We performed a thematic analysis of the abstracts using Braun and Clarke’s six phases: reading and coding the abstracts, developing preliminary themes, discussing the preliminary themes, finding consensus about themes, and naming the final themes . We creaThe gender perspective in ethics research is limited. In the recommendations from The 2030 Agenda for Sustainable Development , a gendeDuring a 2-day workshop in Denmark, the research group performed and developed all analytical steps together for credibility and validity reasons in line with investigator triangulation . Two of To test the effectiveness of the gender ethics analysis, we used abortion as a subtheme in two articles, one from Denmark (Article 1) and one from Japan Article 2), as abortion is an important ethical topic for both women and midwives. WHO and ICM recommends that midwives (and sometimes nurses) be the key providers of abortion services , 26. Fro, as aborThe application of the gender ethics protocol added value by improving our analysis of gendered dimensions, confirming that this approach could be very useful for researchers in midwifery science Table .In both articles, we found an overarching ethical dilemma along with underlying dilemmas. When researchers are exploring ethical dilemmas, the presentation of the ethical dilemmas must be clearly stated. Both articles blurred these topics although they were less visible in article 2. The context was not well described, which is a pitfall of much of the research in medicine and health . We coulAs gender dynamics and power relations seem to be interwoven and should not be seen as separable, we suggest that those dimensions be analyzed together. The issue of privileged versus unprivileged is part of an intersectional analysis and is well suited for this method . ResearcThis is an important aspect as the risk for othering and ethnocentric vision at times are gender-blind issues. Finally, investigating what was not talked about proved interesting. From a discursive perspective, these issues are highly relevant , and we In Fig. We discovered a gap in knowledge concerning the ability to understand, uncover, and synthesize ethical dilemmas in midwifery from a gender perspective in published research articles. As we could not find a sustainable model suitable for our purpose, we developed a gender ethics model for midwifery to understand the dynamic relations of gender and power and how these are produced and reproduced and to develop alternative courses of action in line with ethics of care , 10, 11.sharp curette dominated. According to the WHO [From the literature search, inspired by thematic analysis, four broad themes were identified and named: Midwifery Profession, Rights of the Woman, Fetal Rights Dominate, and Medicalization of Pregnancy and Childbirth. We were identified, selected, and critically appraised the research that we found relevant for the overall aim: to explore the gender ethical dilemmas unique to maternity care and unpack these as a starting point for developing a gender ethics protocol suitable for providing gender ethical interpretations of results. This protocol was further refined and used in our pilot study about abortion. The protocol enabled a gender analysis of the two pilot articles. The actual outcome of the pilot analysis indicates that the autonomy of midwives and their scope of practice might be constrained and that obstetric medicalized/authoritative knowledge still plays a dominate role in maternity practice. For example, in Japan, the old curette dilation method is still used during abortions although medical abortion is proven to be a safer, cheaper, and ethically desirable alternative. A retrospective study from Japan published in 2015  showed t the WHO , medical the WHO . In Denm the WHO . The sub the WHO  identifi the WHO . Fleming the WHO , althoug the WHO  do not a the WHO . The genFinally, GEMM can be used to synthesize dimensions of gender and power with theoretical underpinnings and ultimately be used as to elaborate these dimensions. GEMM can also be used to visualize how gender and power are produced and reproduced and help GEMM reveal gender ethics issues. Gender analysis can add to the understanding of how gender inequities/inequalities are produced and reproduced in a given situation or praxis such as maternity care and how inequalities can be changed .In this article, we systematically presented the various steps taken to develop a gender ethics model for midwifery, GEMM. To address our research question, we combined a traditional and “a modified” literature review in line with Moher et al.’s recommendations  with a gScopus and Web of Science were searched during the data collection, and these large databases cover more than 20,000 and 12,000 journals, respectively, which is a strength. The search in selected journals in the field of midwifery science was performed to ensure that specific articles about ethical dilemmas in maternity care were covered. Despite this effort, we might have missed relevant articles. We could have performed a new search of articles published since 2019 as new publications will always turn up; however, we judged that limiting the search to 23 years was sufficient. Transparency guided the research process and the various methodological steps were described in the development of the gender ethics model, an audit trail that the reader can follow . To incrThere is limited ethical research that uses gender theory to explore midwifery science. This model is a starting point for advancing this area of research. To our knowledge, this is the first protocol in gender ethics to explore ethical dilemmas in midwifery science. In this paper, we look at midwifery science literature from a perspective of feminist ethics to develop a theory model that describes gender ethical dilemmas. To do this, we employed a modified systematic literature review and a thematic analysis to elaborate a gender ethics frame and integrate the individual to structural components in the gender ethics model for midwifery (GEMM). From the broad literature search, inspired by thematic analysis, four broad themes were identified. The gender ethics protocol was tested and refined during the analysis of one qualitative and one quantitative article from the subtheme abortion. Two articles about abortion/TOP in midwifery are not enough to arrive at a universally applicable theory, but it is a solid beginning. In low- and middle-income countries, access to abortion care is sometimes restricted or hidden and information lacking . Often, As gender researchers, we know that there is an overt risk that gender dimensions are ignored if researchers are unwilling to admit the existence of power imbalance in the lives of humans, if researchers lack the specific gender competence, or if researchers lack an adequate methodological tool. The protocol and the GEMM represents a strategy to develop a method for gender analysis that can be used in research and education. When using the gender ethics protocol, we recommend including researchers with gender competence as this will advance the gender analysis.In a next article, we plan to apply the gender ethics protocol to a major set of articles from a 5-year exploration of ethical dilemmas and gender issues in midwifery practice and research to use and further validate the strengths and eventual limitations of the gender ethics model.


The central nervous system is the most important nervous system in vertebrates, which is responsible for transmitting information to the peripheral nervous system and controlling the body’s activities. It mainly consists of the brain and spinal cord, which contains rich of neurons, the precision of the neural structures susceptible to damage from the outside world and from the internal factors of inflammation infection, leading to a series of central nervous system diseases, such as traumatic brain injury, nerve inflammation, etc., these diseases may cause irreversible damage on the central nervous or lead to subsequent chronic lesions. After disease or injury, the immune system of the central nervous system will play a role, releasing cytokines to recruit immune cells to enter, and the immune cells will differentiate according to the location and degree of the lesion, and become specific immune cells with different functions, recognize and phagocytose inflammatory factors, and repair the damaged neural structure. However, if the response of these immune cells is not suppressed, the overexpression of some genes can cause further damage to the central nervous system. There is a need to understand the molecular mechanisms by which these immune cells work, and this information may lead to immunotherapies that target certain diseases and avoid over-activation of immune cells. In this review, we summarized several immune cells that mainly play a role in the central nervous system and their roles, and also explained the response process of the immune system in the process of some common neurological diseases, which may provide new insights into the central nervous system. The immune processes involved in these two types of immunity and the therapeutic regulation of disease and injury by immune cells are not unidirectional in their effects on the CNS, for the reason that the wrong activation or over-response can cause damage to the central nervous system. The developed nervous system of vertebrates is an important sign of high evolution , 2. CentBecause the CNS is the most important vertebrate nervous system, and the brain and spinal cord, the two main components of the CNS, have been shown to be non-renewable . TherefoAt present, there is a relatively clear understanding of the birth and differentiation of immune cells, and more understanding of the possible functions of most immune cells after differentiation. Studies on CNS immunity from 2020 to the present have mainly focused on the molecular mechanism of immune cells entering the CNS and promoting CNS inflammation, and on this basis, how to regulate the response degree of immune cells. For some immune cells, the researchers found other types of differentiation and other effects. Other studies have attempted to explain the link between CNS immunity and other diseases, and have attempted to use CNS immunotherapy as a clinical treatment , 9.In this review, we illustrated the immune components of CNS and their roles, observe the performance of these immune components in different neurological diseases, and judged whether they are beneficial or harmful for CNS diseases. Based on this information, we may find ideas and methods of immunotherapy for these diseases.The central nervous system of the human body consists of the brain and the spinal cord Figure 1Brain, generally refers to three parts which are: cerebellum, brainstem, diencephalon. The brainstem is an important part of the brain responsible for sensing injury and processing pain signals, and transmits and processes signals between the brain, cerebellum and spinal. The conventional wisdom about the cerebellum is that it is essential for motor function and contributes little to cognitive function . HoweverThe sensory organs with receptors establish communication with the central nervous system through the afferent nerves, so as to realize the regulation of the central nervous system. Peripheral nerve tissue is composed of afferent sensory fibers and efferent motor fibers. When receptors such as the skin are stimulated by the outside world, they will produce nerve impulses. Nerve synapses release neurotransmitters, which are received by cells, and the resting potential is converted into action potential . After rTake, for example, the mechanism of regulation of renal afferent sensory nerves in the central nervous system. Kidney is an important sensory organ with abundant baroreceptors and chemoreceptors, as well as a large number of afferent nerves. Renal afferents can directly project to areas of the central nervous system, such as the lateral thalamic area and the paraventricular nucleus (PVN), and indirectly project to other areas of the hypothalamus . During In simple terms, the peripheral nervous system gives information to the CNS in the form of electrical stimulation through the afferent nerve, which is processed by the CNS to realize the regulation of the body.Among all immune cells in the central nervous system, macrophages and glial cells derived from them, as well as lymphocytes including T cells, B cells and self-killing immune cells, play a major role Table 1.Microglia are the main cellular component of the innate immune system of the brain. They are distributed in the whole brain at different densities, accounting for 5%-20% of the total brain cells, and are developed from primitive macrophages , 26. MicLymphocytes are the main cells of the body’s immune response, which are produced by lymphoid organs and can respond to signals such as foreign pathogens or inflammatory stimuli. T cells, B cells and natural killer cells play a significant role in central nervous system immunity. The main reason for the suppression of immune action in the CNS is the blockage of the blood-brain barrier , 51. OnlT cells and B cells together constitute acquired immunity. They can all differentiate into different subtypes , releaseB cells travel from the skull to the meninges through blood vessels , 60, andT lymphocytes, the sentinels of the adaptive immune system, respond to antigen-specific signals by bursting, proliferating, and differentiating into effector subsets to recognize and eliminate threats to the host , 67. In Natural killer immune cell (NK) is a kind of large granular hematopoietic cell derived from bone marrow , and itsRecent studies have shown that astrocytes play an important role in CNS immunity by associating with other immune cells. For example, the recognition of astrocytes depends on microglia, and the subsequent release of caspases induced by astrocytes promotes apoptosis and reduces cellular inflammation. IF-33 released by astrocytes can recruit twice as many T cells and promote the repair of CNS diseases such as neurodegenerative diseases and spinal cord injuries .The CNS immune system is divided into innate immunity and specific immunity, which make different immune responses in different situations. Some autoimmunity can lead to diseases, but the immune effect after injury helps to recover from injury .After CNS injury, a series of subsequent immune responses are triggered, first innate immunity and then specific immunity. Both types of immunity can expand their number by releasing cytokines and regulating genes from immune cells –84. The Due to the particularity of the CNS, the BBB still acts as a barrier, making the CNS an immune privileged organ. Its carrier and receptor proteins are the only way for outside proteins to enter the CNS, ensuring precise regulation of what enters the brain . This baHowever, the CNS has connections to all surrounding organs . There iCentral nervous system diseases include central neurodegenerative diseases, nervous system infections, brain tumors and other types of diseases, including brain injury, spinal cord injury and peripheral nerve injury from the point of view of injury and disease location. These diseases are related to the immune system to some extent. Here we focus on central neurodegenerative neurological diseases, CNS tumors, traumatic brain injury, and spinal cord injury.Brain tumors are generally divided into two categories, namely those from external sources, also known as metastases, and those arising from the central nervous system, such as gliomas . We focuCNS tumor immune process after the basic follow - tumor immune system cycle, this is Chen et al. Applied to inducing tumor immune response rule , after tIn 2019, there were about 50 million people living with neurodegenerative diseases worldwide, and this number is expected to rise to 152 million by 2060 . In his An important component of neurodegenerative diseases is the triggering of innate immune mechanisms. Microglia and other cell types in the brain can be activated by misfolded proteins or abnormally localized nucleic acids. This detents microglia from their physiological and beneficial functions and leads to a sustained release of their proinflammatory mediators . In the Spinal cord injury (SCI) refers to the injury of the spinal cord and the pathological changes such as sensory and motor disorders after the body encounters direct or indirect external interference. Spinal cord injury may lead to loss of limb perception, incontinence and even complete paralysis, which may not recover for a lifetime or even be life-threatening .After SCI, to ensure the regeneration of damaged axons , the CNSTraumatic brain injury (TBI) is an injury to the brain caused by external forces or external shocks, which may lead to a reduction or change in the state of consciousness and easily cause biochemical cascade damage, so it may be accompanied by long-term sequelae . After tNeuroinflammation and peripheral neuropathy are easily triggered after TBI . There aSimilar to other neurological diseases, in TBI, immune cells can both promote recovery and aggravate injury . TBI canNow the treatment of some kinds of new ideas are mainly concentrated in cell therapy , becauseIn each of these diseases, the brain is damaged to a degree that releases specific substances that activate the innate immune system, which in turn activates and recruits the peripheral immune system. The immune system plays an important role in the anti-inflammatory response to disease injury and subsequent damage repair, but some immune responses also lead to the deterioration of the disease, so it is believed that CNS diseases and CNS immune system have an important relationship Figure 2Although some immune cells in the CNS have been discovered and their functions have been relatively obvious, a large part of the CNS is still unknown. Previous studies have shown that the molecular pattern and molecular reason for these apparent phenomena are still unclear after addressing the expression role of the immune system. For example, do NK cells maintain or regulate repair functions in the central nervous system and how do they do it? What is the mechanism of macrophage phagocytosis and foam cell formation after SCI? How do macrophages recognize and internalize specific molecules in apoptotic neutrophils? All these problems now seem difficult to solve , 155.In addition, some immune cells were surprisingly found to be present in specific disease contexts, which could not be explained by current understanding. Some CNS diseases currently have no suitable treatment , 157, anIn the future studies, more neurological diseases will be taken into account, and the immune connection between the CNS and the peripheral nervous system may become an important consideration of immune effects.JX and CM had the idea for the article. MH and JL performed the literature search and data analysis. JW and ZX drafted and critically revised the work. All authors contributed to the article and approved the submitted version.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Objective: The objective was to investigate the association of clinical attributes with decision making for performing appendectomy and making preoperative preparations for appendectomy. Method: A conjoint analysis with 17 clinical scenarios was executed with surgeons employed at public hospitals in Kosovo. Setting: The study was conducted at two public hospitals in Kosovo that have benefited from quality-improvement interventions. Participants: The participants included 22 surgeons. Outcome measures: The primary outcome was the overall effect of clinical attributes on the decision to perform appendectomy and make the preoperative preparations for appendectomy. Results: In the regression analyses, several attributes demonstrated statistically significant effects on the clinical decision to perform appendectomy and on the practice of preoperative preparation. Conclusions: We found that several factors influenced the decision to perform appendectomy and the practices for preoperative preparation. Nevertheless, the small sample size limited our efforts to interpret the results. These findings could assist Kosovo in the design and implementation of future similar studies and in fostering quality improvement measures that address clinical decision making and the lack of process standardization in the delivery of surgical care. Appendicitis, as one of the most common causes for surgical intervention, remains a notable public health problem, with the highest incidence occurring in the second and third decades of life . The appPhase two of the Project KSV/017 Health Support Programme in Kosovo aimed to establish a quality and safety management system at two public general hospitals in Kosovo: Prizren and Gjilan Hospital. The process started with a situation analysis of the hospitals in terms of their service delivery , human resources, Health Information System (HIS), availability of medication, equipment, financing, and leadership . The assTo achieve this, i.e., assess clinical decision making and the influence of training in changing decision-making patterns, we opted for a conjoint analysis. Conjoint analyses have previously been used to examine the importance of clinical factors in clinical judgments ,11. It iThe objective of this study was to elicit the process of clinical decision making related to performing appendectomy and the preoperative preparation for appendectomy by evaluating surgeons’ preferences through discrete choice designs of various clinical scenarios. It aimed to document the variation in clinical decision making and the attributes that drive such variation, and to examine the early impact of training programs for surgeons.Two conjoint experiments were performed. The first experiment focused on the clinical decision to conclude that an appendectomy should be performed based on symptoms and a clinical examination. The second focused on the preoperative preparation of patients for an appendectomy based on a clinical examination and other preparation procedures. A 10-stage structure of a conjoint analysis in health, adapted by Bridges et al. , was folThe participants were surgeons from two regional general hospitals in Kosovo. Both hospitals are beneficiaries of the KSV017 project. In total, 22 interviews were performed and only 2 eligible participants could not participate in the experiments. Even though larger sample sizes are recommended for performing a conjoint analysis, smaller population sizes may be employed when the population is representative of the source population ,20,21,22The data collection was performed by an experienced researcher (I.H.) using in-person interviews in most cases. When that was not possible due to COVID-19, we switched to online interviews. Each respondent was asked to make a decision for each vignette. Each presented vignette/scenario had the options of yes or no. In the first experiment, the clinician had to decide if he would perform an appendectomy on a patient with acute appendicitis based on clinical signs and examination results. In the second experiment, the clinician had to decide whether the patient was (preoperatively) prepared to enter the operation room for an appendectomy procedure.We performed a literature review of textbooks and research papers to determine the attributes and levels of attributes for both experiments. For the second experiment, we also referred to an SOP for the preoperative preparation of patients for appendectomy, which was developed by the project to assist the surgeon’s work concerning appendectomies. Attributes were selected based on three criteria: relevance to the research question, relevance to the decision context, and relation to one another . As a reTo test the attributes with clinicians, we compiled two questionnaires for each experiment. We used these tests to examine the clarity of the attributes and to identify if there were any perceived absolute indications to remove them after the testing. The attributes and respective levels were reviewed to produce a final list of attributes for both experiments. The attributes for the first experiment included the McBurney sign, vomiting, temperature, white blood cell count (WBCC), erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), and other causes (not appendicitis-related) of right lower quadrant abdominal pain. The attributes for the second experiment were a clinical examination, clinical measures, comorbidities, diagnostic procedures, preoperative techniques, other procedures, and patient consent.The next step was the design of the vignettes, i.e., clinical scenarios for each experiment. This was accomplished using the SPSS orthogonal design facility. As a result, we identified 16 vignettes for each planned questionnaire that contained different levels out of seven attributes. We added an additional vignette with a real-case scenario for both experiments. The vignettes for each experiment were integrated into the main survey questionnaire. In addition to the vignettes, these questionnaires collected information on demographics, education, experience, exposure to scientific work, and benefits from the project . Multinomial logistic regression models with robust variance estimates, yielding relative risk ratios (RRRs), reflected the probability of choosing to perform an appendectomy (Experiment 1) or deciding that the patient is prepared to have an appendectomy performed (Experiment 2). Statistical analyses were performed with STATA V17 BE . The Ethical Review Committee reviewed the study protocol at Heimerer College. In the original design, we aimed to perform a subgroup analysis by project benefit, but due to the small sample size, we refrained from performing it.The final sample consisted of 22 surgeons, including paediatric surgeons (18%) and general surgeons (82%). Only one respondent reported having a sub-speciality. A total of 21 respondents reported regular Continual Medical Education (CME) attendance. A considerable percentage of the participants had benefited from the training (73%), but only a small percentage (9%) had benefited from the study visits. None of the respondents claimed that their ward had benefited from the project.A total of 17 vignettes were employed in each experiment. With 22 participants, there were 374 cases available for each analysis, i.e., the decision for appendectomy and preparation for appendectomy.9/L in comparison to a level ≥10 × 109/L . No other clinical factor significantly influenced the decision to perform appendectomy.In the regression analyses, several attributes demonstrated statistically significant effects on the clinical decision for appendectomy. The presence of a positive McBurney sign had a major effect on the clinical decision compared to a negative sign . The presence of vomiting demonstrated a statistically significant effect on the clinical decision at the ‘maybe’ level of the attribute compared to the ‘no’ level . In addition, the decision to perform appendectomy was significantly influenced by the white blood cell count (WBCC) at a level ≥15 × 10A clinical examination, patient consent, and other procedures significantly affected the preoperative preparation for appendectomy. The patient history and a physical examination were the most common determinants in the preoperative preparation for appendectomy compared to the patient history and examination separately . Mandatory patient consent was also more common in preoperative preparation than optional consent .Our conjoint analysis demonstrated that the decision making to perform appendectomy was influenced by several factors, including the McBurney sign, vomiting, and WBCC. The preoperative preparation was mainly influenced by a clinical examination and patient consent. We observed wide confidence intervals for each clinical attribute, which indicated variation in clinical decision making.To our knowledge, this is the first study to analyse the decision making to perform appendectomy in Kosovo and the region , focusing on the clinical attributes that influence it. In addition, this study examined the effect of the clinical attributes that define the preoperative preparation for appendectomy. Using conjoint analysis, we quantified the impact of clinical attributes on the decision to perform appendectomy and on the preoperative preparation. The decision to perform appendectomy is minimally documented. Hence, our study provides a practical design and evidence in this domain. The small sample size was the main limitation of this study ,20,21,22Appendectomy has been recognized as a standard treatment for appendicitis for a long time. Nevertheless, the successful management of patients without surgery is evident in several studies ,25. One The process of making a balanced judgement on whether to perform an appendectomy or not remains very challenging, mainly due to the variation in symptoms and signs in different patients, but also due to the lack of standardized care and organizational barriers . That beThe initial findings indicate a lack of standardization of clinical decision making and preoperative care related to appendectomies. Another round of repeating the same design later in the implementation phase is a recommended option, especially if conducted with a larger number of surgeons from other public hospitals. This would allow time for the effects of an intervention to take place. It would also allow for a post-intervention analysis with a comparison of the results with the baseline. Finally, a larger number of hospitals would mean a larger sample size, which could be helpful for the generalization of findings in the country context and beyond.In conclusion, the clinical decisions and preparation for preoperative procedures in Kosovo are influenced by different factors and can vary among surgeons. We found that several factors influenced the decision to perform appendectomy and the practices for preoperative preparation. At times, these factors have little clinical importance as compared to other signs, and at other times, they are not relevanto the clinical decision. There is also wide variation in the effect of clinical attributes. Nevertheless, the small sample size limited our efforts to interpret the results. These findings could assist Kosovo in the design and implementation of future similar studies and in fostering quality improvement measures for addressing clinical decision making and the lack of process standardization in the delivery of surgical care. Most attribute-stated preference studies in healthcare are focused on high-income countries ,26, and


Understanding the growth pattern is important in view of child and adolescent development. Due to different tempo of growth and timing of adolescent growth spurt, individuals reach their adult height at different ages. Accurate models to assess the growth involve intrusive radiological methods whereas the predictive models based solely on height data are typically limited to percentiles and therefore rather inaccurate, especially during the onset of puberty. There is a need for more accurate non-invasive methods for height prediction that are easily applicable in the fields of sports and physical education, as well as in endocrinology. We developed a novel method, called Growth Curve Comparison (GCC), for height prediction, based on a large cohort of > 16,000 Slovenian schoolchildren followed yearly from ages 8 to 18. We compared the GCC method to the percentile method, linear regressor, decision tree regressor, and extreme gradient boosting. The GCC method outperformed the predictions of other methods over the entire age span both in boys and girls. The method was incorporated into a publicly available web application. We anticipate our method to be applicable also to other models predicting developmental outcomes of children and adolescents, such as for comparison of any developmental curves of anthropometric as well as fitness data. It can serve as a useful tool for assessment, planning, implementation, and monitoring of somatic and motor development of children and youth. Height is one of the key indicators of optimal growth, while adult height prediction is of clinical importance in pediatric endocrinology and pediatric exercise science . It is oIn routine clinical practice, height is assessed by using normative data based on growth charts and operationalized through percentiles. However, the cross-sectional nature of existing growth curves causes low accuracy in the prediction of final height, particularly during puberty. Cole and Wright  recentlyIn order to develop a nonintrusive and inexpensive method of predicting adult height from anthropometric measurements, the modified Roche-Wainer-Thissen method  and the Several mathematical models for predicting adult height from child and adolescent height data alone have been developed as well, but they typically included the timing of peak height velocity (PHV) determining pubertal growth spurt and thus not allowing adult height prediction from pre-pubertal data , 19. In There have been several attempts to construct linear and non-linear mathematical models for the prediction of growth from height data alone, focusing on the prediction of height growth, but aiming also for the prediction of PHV and other dimensions. All these models are limited by a large number of parameters needed with unclear rationale for their inclusion in the models, and by rather small samples that were used in their construction , 21–27. In this paper, we explore the possibilities of using the population data (“big data”) for predicting the mature statue with the help of ML algorithms. The strong advantage of this approach is that the only input required is the height of individuals in a series of consecutive ages, which are typically readily available. The models were trained and evaluated using the Slovenian SLOfit database. The national monitoring system for somatic and motor development of children SLOfit was introduced in 1982 and has been enabling the gathering of annual population data on height, weight, subcutaneous fat and several fitness parameters for generations of children from the beginning of primary school at the age of 6 or 7 to the conclusion of secondary school at age of 18 or 19 . The popWe compare the accuracy of our method, named the Growth Curve Comparison (GCC), with other possible approaches (some of which were used in the related work), namely the percentile method and the methods based on linear regression and decision tree regressors. We further elaborate the performance of the GCC method, which we made publicly available through a web application.i.e. the individual growth curve) during their enrolment in the primary and secondary school, from ages 8 to 18 . As the measurements are always conducted in April, we linearly interpolated the height data from two consequent years to the value at the student’s birthday in order to make the data more accurate. By default, the method thus always requires at least two measurements to make a prediction. In total, our subset consisted of data for 7,577 boys and 9,181 girls, totalling 184,338 data points.The data in our study was obtained from the SLOfit database, the Slovenian national monitoring system of somatic and motor development of school children between 6 and 19 years of age . For ourThe SLOfit study was approved by the Commission of the Republic of Slovenia for Medical Ethics for research (No. 102/03/15). One of the parents or legal guardians provided a written informed consent to include the child in the study.Since a direct comparison with most of the methods in the related work is not possible–as they use different types of anthropometric data–we focus on the comparison with the approaches that are based on the height time series data, such as we have in our dataset. We compare the performance of the method developed in this study (named the Growth Curve Comparison-GCC) with previously available approaches based on the percentiles (inspired by Cole and Wright ) and foupercentile method, considered as the baseline, assumes that an individual is always in the same rank within the population. Hence, to determine the adult height of the person who is at the Nth percentile at a given age, we look at the average height of the said Nth percentile at the age of 18.The linear regression method, which is a well-known statistical method, computes the predicted height as a linear combination of the input data , which are derived from the height values. For height-related features, we considered the following: height at the current year, height at the previous year, growth in the last year and growth in the second-to-last year (i.e. first derivative), average growth per year up to the current year, maximal growth up to the current year, variance of annual growth values, percentile for the current year, difference between the last year’s growth and the average value for the population, difference between the growths for the last two years, trend of growth per year for last two years (i.e. second derivative), and the distance from the age of 18. Variants of this method use decision tree regressor, and regressor with the Extreme gradient boosting [XGB) algorithm. The age where the peak height velocity (PHV) takes place was used as an additional feature in one set of the XGB models. To estimate that age, we first manually labelled the PHV age for 100 boys and 100 girls, and used this information to fine-tune the model. The features we used were focused on detecting the changes in height growth. When measuring the accuracy, we looked at each year and predicted if PHV happened at this year or not. Our model based on XGB yielded 95% accuracy. The dummy model that predicts for every year that PHV did not happen yielded 83% accuracy (since PHV indeed does not happen in 83% of years).The next four methods use machine-learning approaches. The boosting  (XGB) alGCC method takes the growth curve of an individual student up to the chosen year. The method calculates the cosine similarity between the growth curve of this student and those of other students. The cosine similarity between vectors x and y is defined as [The fined as k=Based on this metric, the method searches for 100 individuals in the database with the most similar growth curve up to that point, and collects the adult heights for these 100 individuals. Based on these 100 individuals, the method calculates their average growth per year, and sums these growths to make a forecast for a given year. This approach turned out to be more accurate than simply using the median height of the most similar 100 individuals. For illustration, for very tall (or very short) individuals, such an approach would be always wrong as even the most similar individuals are shorter  than the person whose adult height we are forecasting. The number 100 was chosen as a compromise between accuracy and computational speed, as the reasonable number is somewhere between 75 and 100, while increasing to 150 individuals represents a negligible improvement in accuracy, while demanding a longer computational time. An illustration of the pipeline is shown in To compare the performance of different models, we first calculated the absolute difference between the actual and predicted height for each student in the testing set, and then averaged these values over all individuals in the set. This metric was calculated for each year, namely using the data from 8-year-olds  and forecasting height at the age of 18; using the data for 9-year-olds  and forecasting to the age of 18; and all the way to the age of 17. Here, we assume that all students have already reached the adult height at the age of 18 (we commented on that in the discussion section), so no forecast is needed. For the linear regression and regression tree models, this was carried out using a five-fold cross-validation approach. The percentile and the GCC methods were evaluated using all individuals in the set.We first look at our dataset considering the age when PHV begins. The timing of PHV is determined as maximum rate of growth between two annual measurements. The linear regression model improves the predictions of the percentile method for both sexes over the entire age range. For boys, the average error in determining the mature height is about 3 cm from ages 8 to 14, then the average error sharply drops. The results are similar for girls, with the average error starting to drop after the age of 12, consistent with the earlier onset of puberty. A larger average predicted error in the prepubertal ages is most likely influenced by the fact that pubertal growth is rather independent of prepubertal growth, which means that the accuracy of the prediction is bound to improve after children enter the pubertal growth . The aveIn the above evaluation, we assumed that we had the height values from the age of 8, but the data may be available only starting at a later age. Tables From the two tables we can see that the error is decreasing with the longer series of height values. Again, we see the effect of the adolescent growth spurt on the error–for boys, the largest errors occur when we take short series of heights around the ages of 12 to 14, while for girls this interval is from 11 to 13, when most individuals go through puberty, but at different times. For example, if we look at the first row in https://en.slofit.org/measurements/height-prediction. To make the forecasts of the GCC method publicly available, we developed a website application where the user can input a time series of heights to get the year-by-year forecast. The application is accessible at Tables Adult height prediction allows parents and professionals to predict a child’s adult height, but the use of existing methods for height prediction is often complicated either by their intrusive nature, large number of diverse required measurements, or demanding calculations. From a clinical and economic point of view, a proper prediction of an individual future growth, based on non-intrusive easily obtainable or routine measurements, is preferable. In this regard we developed a ML algorithm, based on growth curve comparison that enables the prediction of adult height only from one previous height measurements and with greater accuracy than the existing non-intrusive methods that have been utilized in other approaches, based on height time series data , 28–30. The prediction error of our GCC method is consistently decreasing with the longer series of height values and is generally lower in girls than boys, which is reasonable due to their shorter height on average. Similarly, the average error of other studied methods was declining with increasing age and approaching adult height. In general, the largest prediction error in comparison to GCC method was observed in DT method. At age 8 the average error of DT method was 17 mm and 19 mm larger in boys and girls, respectively, but the error at this age was considerably lower than in a comparable study in the preschool children .Interestingly, even the percentile method, widely used as height-for-age curves , produceFurthermore, the more sophisticated XGB method produced larger prediction errors than the GCC method because it tended to overfit the training data. Its performance was poorer in girls with average prediction errors being around 5 mm larger than in GCC method throughout the pre-adolescent period. In boys the average prediction error of the XBG method was around 3 mm larger than of the GCC method, but this difference declined towards adult height. Our identified prediction errors of this method were, nevertheless, much smaller than the reported errors in a study utilizing parental height , which rThe classical LR method performed similarly as the XGB method and thus with larger prediction error than the GCC method, although its predictive error increased around the PHV period. In comparison to existing models, utilizing the LR methods, the predictive error of our GCC model was considerably lower than the 4–5 cm error, reported by Cole et al.  or Lee eIn comparison to other studies on height prediction, the strength of our study lies in its large set of longitudinal cohort data, covering the entire school age, and our use of advanced ML algorithms. In addition, our study included a very recent cohort, representative of current population of children, which ensures its applicability also in the future. The observed CIs of our proposed GCC model are much narrower than in other tested linear methods and enable fair prediction of adult height already from twos pre-existing height values . Still, there are several limitations of this study that are worth noting. Our method is applicable for children and adolescents from 8 to 18 years of age but does not take into account that around one half of boys obtain final adult height after the age of 18, which could lead to slight underestimation of adult height. Next, our GCC model was developed on the representative Slovenian sample, but the method itself can easily be adopted for another population if such data is available. Despite an extensive search for open access datasets, we were unsuccessful in obtaining an appropriate dataset that would allow external validation of the newly developed method in a different population of children. To that end, we encourage researchers that curate proprietary longitudinal height datasets to perform further validation studies using the GCC method in diverse populations to test its generalisability. By having the proposed method publicly available in the form of web application, we are creating a practical and easily accessible tool for different profiles of users. Experts in the field of endocrinology can monitor the growth processes in their pediatric patients, sport coaches can find it of assistance in selecting optimal individuals for sport disciplines, and vice versa, while experts from the field of sport, exercise, and physical education can use it to assess and adapt individual training/exercise/learning plans to maturational status of their young athletes. Furthermore, the method is easily translatable to any set of time series data related to anthropometric or motor development. Although our model is outperforming the existing non-intrusive methods of height prediction, it could be further improved with inclusion of additional data or other height-related metrics, which should be a topic of future research.We present several approaches for prediction of the adult height from a series of heights at different ages. Using the Slovenian dataset, we developed a new forecasting method based on the big data approach, named the “Growth Curve Comparison” and contrasted it with several well-known non-intrusive methods in wide use, including the percentile approach and the linear regression. The GCC method compares the available growth curve of an individual with all boys or girls in the dataset and then uses the data of the most similar individuals to predict the adult height. This method has proven superior to all other approaches in the current study and was consequently incorporated in a web application which is publicly accessible on the SLOfit website to parents, teachers, trainers, physicians, and other experts, working in the areas related to children development.


Vision therapy, also known as behavioral therapy, is theorized by its practitioners to treat a variety of visual disorders, including learning disability in children. However, the utility of vision therapy to treat various learning disabilities is challenged by the American Academy of Pediatrics, American Academy of Ophthalmology, American Association for Pediatric Ophthalmology and Strabismus, and the American Association of Certified Orthoptists. The purpose of this review is to (1) provide an overview of vision therapy, (2) evaluate the evidence for vision therapy, and (3) give practical recommendations for pediatric primary care providers regarding vision therapy. A review of the literature demonstrates evidence that vision therapy is useful in the management of convergence insufficiency only. There is insufficient evidence to recommend in-office vision therapy for the management of other types of strabismus, amblyopia, or learning disability in the pediatric population. Vision therapy, also known as behavioral optometry, began as a branch of optometry started by Arthur Marten Skeffington to treat visual disorders using methods outside of traditional optometric or orthoptic teaching . As of OA typical vision therapy program involves weeks to months of “individually prescribed” exercises done in the office with supplemental exercises at home. They involve various methods to force the use of both eyes, as well as various exercises to improve visual processing, visual tracking, and visual perception. Most of these treatments are non-specific, and some practitioners of vision therapy believe that these visual disorders underly many learning disabilities in children.While some vision therapy techniques ,4 have sThe problem with binasal occlusion is that children who are born with strabismus, or develop it at an early age, suppress the deviating eye so as not to experience diplopia. Essentially, the brain turns off the deviated eye so that the child can function without double vision. Binasal occlusion serves no purpose to an eye that is already suppressed, and in the fixating eye, the child will just avoid that direction of gaze. It does not correct esotropia, and there are no clinical trials or evidence in literature to support its use in correcting any form of strabismus. A young child has no incentive to straighten a constantly deviating eye because it is constantly suppressed. Surgical intervention, when warranted, at least gives the patient a chance of developing binocularity by straightening the eyes, eliminating suppression.Some practitioners of vision therapy make use of yoked prisms for the treatment of various neurologic conditions. The concept behind a yoked prism is that the image is moved to a different location than one perceived by the patient, which forces them to look in other areas of their visual fields. This practice is currently used in adults with hemi-spatial neglect or homonymous defects, as well as in children with nystagmus worse in certain directions of gaze. For example, work in adults by Padula et al., demonstrates that the restoration of visual midline using yoked prisms can help with gait . While sThere are several other techniques that do not have strong scientific evidence that are used by practitioners engaging in vision therapy. They include techniques such as anti-suppression exercises, sometimes involving filtered lenses, to engage the patients to use their suppressed eye. Anti-suppression has fallen out of favor and can lead to patients experiencing intractable diplopia in their previously suppressed eye. Additionally, anti-suppression does not necessarily change an eye deviation, and the authors have seen surgical intervention in these patients also result in intractable diplopia after straightening an eye that was used to its deviated position. Syntonic therapy involves the applications of certain visible light frequencies into the eyes, which is thought to preferentially treat amblyopia and issues with depth perception. Balance boards involve having patients on a wobbly board that can move forward, backward, or side-to-side in order to improve coordination while performing tasks. Eye tracking or saccade exercises use either electronic targets or computer programs that involve looking at targets and following them in order to work on specific muscles of the eyes. Various colored filters are used to remove certain wavelengths of light, which is theorized to create more eye comfort. The Marsden ball involves setting a ball in motion with letters or numbers in order to involve patients in using their eyes to follow the ball and performs tasks such as calling out the letter or number. Rotation trainers involve the use of a spinning disc with pre-cut holes that patients are asked to do tasks (such as pushing objects into the holes) on while it is spinning. There remains considerable controversy in the use of vision therapy for most pediatric eye disorders. The use of vision therapy to aid in learning disabilities is not supported by the American Academy of Pediatrics, American Academy of Pediatric Ophthalmology and Strabismus, American Academy of Ophthalmology, and American Association of Certified Orthoptists ,11,12. DA review of the literature demonstrates a dearth of evidence for the use of vision therapy in children . A systeThere exists good evidence for certain forms of vision therapy in children  and adulAt this time, there is insufficient evidence to suggest that amblyopia treatment would benefit from in-office-based vision therapy. The only randomized controlled trial completed did not involve in-office therapy, but a home-based video game to improve vision in patients with anisometropic amblyopia (amblyopia due to a significant difference in refractive error between eyes) ,17. PediThere is no evidence to suggest that vision therapy can aid children who are underperforming at school, such as those with dyslexia, attention deficit disorder, behavioral problems, etc. . Vision The remainder of the vision therapy literature is formed from uncontrolled, non-randomized, and poorly controlled studies. There are reports of vision therapy being potentially effective in cases of intermittent exotropia. Ma et al., found that vision therapy did not change the amount of misalignment, but improved the control at both far and near distances . HoweverThere are significant conclusions in the optometric literature to argue against the use of vision therapy in learning disabilities or impaired neurologic function, which is in agreement with the official stance of the many professional organizations that care for children ,23. RuckAll patients seeking vision therapy and undergoing vision therapy should be evaluated for a second opinion by a pediatric ophthalmologist or an ophthalmologist with experience in caring for children. There is only sufficient evidence to suggest the use of vision therapy in patients suffering from convergence insufficiency, although the data regarding the need for in-office visits has significant confounders. Families of children with impaired vision or learning disabilities should not be encouraged to seek out-of-pocket and potentially unnecessary treatments without clear evidence of benefit. The American Academy of Pediatrics, American Academy of Pediatric Ophthalmology and Strabismus, American Academy of Ophthalmology, and American Association of Certified Orthoptists recommend against the use vision therapy for the treatment of learning disabilities ,11,12. F


Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public Involvement in health-related research throughout the research process. Furthermore, the numerous definitions, methods, and frameworks make it challenging for researchers new to this field to decide on the most appropriate approach for their project.This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. A group of 11 researchers in Patient and Public Involvement in health-related research participated in six workshops to develop the guidance. The feasibility and acceptability of the guidance were tested in a survey of 14 researchers using the System Usability Scale plus two elaborative questions. The guidance was also tested by five PhD students engaging patient partners in their projects.The guidance developed consisted of two resources: Resource I outlined five international approaches to Patient and Public Involvement in health-related research, and Resource II described the different levels and methods for engaging patient partners in research. The System Usability Scale score (at the 50th percentile) was 80, indicating excellent usability. Qualitative data showed that the two resources supported reflections regarding different approaches, levels, and methods.The researchers found the guidance to be supportive of their reflective thinking about engaging patient partners in their research. The testing provided knowledge about when and how to use the guidance but also raised questions about the usefulness of the guidance in communications with patients.The online version contains supplementary material available at 10.1186/s40900-022-00378-2. More and more patients are taking part in research as patient partners. However, researchers have little guidance on how to bring patient partners into research studies and at what levels. There are many ways to do this. It can be hard to choose the way most appropriate for a specific project, especially for newer researchers. We (11 researchers at different career levels) developed guidance through six workshops to help new researchers choosing the way to engage patient partners most appropriate for their project. The guidance resulted in two different resources. Resource I gives five international approaches for bringing patient partners into research. Resource II describes methods for engaging patient partners at different levels. Fourteen researchers and five PhD students tested the guidance and scored how usable it is. It had excellent usability. The two resources did help researchers to decide on the best ways to engage patient partners in research. We now need to test how the guidance can be used to talk to patients about taking part in specific research projects.The online version contains supplementary material available at 10.1186/s40900-022-00378-2. Patient and Public Involvement in health-related research (PPI) is a topic of increasing interest internationally. In general, PPI refers to the engagement of patients, relatives, the public, and other stakeholders in the research process . The ratFurthermore, frameworks developed to guide PPI in specific contexts were seldom transferable to other contexts unless they were oriented to and used in a specific clinical field . ResearcFurthermore it seems that PPI can be conducted at different levels. According to Arnstein’s ladder of citizen participation  and the In Denmark, PPI is a new discipline compared to the UK, the USA, Canada, and Australia. In 2016, the extent of PPI across the country was mapped, and the findings indicated that, since 2014, PPI has become integral to health-related research . As seveThis paper contributes to the existing literature by evaluating the usefulness of developing guidance to support researchers deciding on which PPI approaches to choose for their research, and the creation of an overview of some methods for engaging patient partners at different levels in health-related research. To our knowledge, this guidance is the first Nordic attempt to support researchers who either plan to engage or are engaging patient partners in their research projects.This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. The study was supported by the Research Centre for Patient Involvement (ResCenPI), which was established in the Central Denmark Region in 2019 . ResCenPA cross-disciplinary collaborative network was established within ResCenPI. The network consisted of 11 healthcare researchers (authors of the present paper). The researcher representing different clinical fields; oncology, nephrology, endocrinology, dermatology and infectious diseases and they share a special interest in PPI. The members had various levels of research experience, ranging from senior researchers to PhD students. Moreover, the experience and expertise within PPI research varied in the network. The senior researchers have all published PPI related research. All the PhD students are principal investigators in ongoing studies engaging patient partners in the research processes. No patient representatives were included in the development of the PPI guidance, as the collaborative network started as a network for researchers. Through these discussions, the need for a PPI guidance supporting researchers appeared. In the light of this, researchers and PhD students were considered as the end-users of the PPI guidance and were involved in the present development and evaluation.The network worked collaboratively via a series of workshops fall 2020 and spring 2021 to develop PPI guidance for researchers engaging patient partners in health-related research. The workshops were either physical or online meetings and lasted for approximately two hours each. To ensure the work progressed, each member was responsible for preparing and presenting a delegated assignment. The content of these presentations established a starting point for further discussions and decisions, and for seeking consensus in the workshops. At the end of each workshop, the members agreed the delegated assignments for the next workshop. The preparation time for each member was approximately four hours before each workshop. An overview of the tasks and content of the workshops is presented in Table The usability and end-user experiences of the PPI guidance were tested during fall 2021 using various methods. Firstly, a survey was conducted among members of ResCenPI. Secondly, PhD students provided their experiences of using the PPI guidance by replying to open-ended questions in writing.Members of ResCenPI were invited by email to test the PPI guidance in October 2021. The participants had one month to test and evaluate the PPI guidance. Within this time span, one reminder was sent. In the email, the participants received the PPI guidance  , PCORI , 2:Resource I presents five different initiatives from the UK , the USAResource II presents figures that illustrate five levels of PPI (levels 1–5) on a horizontal line. The arrows between the dots represent the direction of communication, where the dot at the bottom represents the researcher, and all other dots represent the patients (or other stakeholders). Within each level, its methods, advantages, and disadvantages are listed. Even though the levels are presented separately, they supplement and overlap each other, as different strategies are often combined. Resource II aims to help researchers reflect on what the main purpose of PPI is in their research, decide if they want to inform/educate, gather information, discuss, engage, or even establish a partnership with patients, and then decide on which methods to use.In total, 14 participants tested the guidance and answered the two elaborative questions and the SUS. The characteristics of the 14 participants are shown in Table The average SUS score (at the 50th percentile) was 80, indicating excellent usability. The group of early career researchers gave an average SUS score (at the 50th percentile) of 67.5, and the group of more experienced researchers 85. Those who were less experienced with PPI gave an average SUS score (at the 50th percentile) of 78.75, the group with 1–3 years of experience 67.5, and the most experienced 87.5.Figure “Yes, I got an answer to the question and am now clearer about which approach supports the way I use PPI in my research.”The qualitative data from the open-ended questions showed that the two resources supported reflections about the different approaches, levels, and methods. Most participants confirmed that the two resources supported them in their decision about which approach to choose. All participants found that Resource I provided them with a useful overview of the different approaches which helped them to position their research. Many commented that such an overview was hard to find elsewhere, possibly because there are so many different approaches. For example, one participant stated:Being able to compare the visions/missions in Resource I was highlighted as especially valuable, as were the links to web pages giving further information.“I think the information is very useful and I would certainly use this in the future when thinking about the most effective way to integrate PPI within a research project/study. I like the use of comparison tables which summarize key points of information.”Resource II was found to be a quick and convenient way to access an overview of the different levels of PPI. It was viewed not only as a tool which could be used at the beginning of the research process, but also later, to confirm clear definitions of which levels of PPI were involved in a project. Some researchers described it as an eye-opener that would increase their use PPI in their research or at certain stages of the research process. It was also found that Resource II could help to establish a clearer definition of the role of patient partners in the research process.The qualitative data primarily from the PhD students revealed how participants chose different approaches, at what level they chose to engage patient partners, and which methods they used. Here, participants stated that their choice of approach depended on the context, e.g., who they wanted to engage and how. Most participants chose to use more than one approach. If they intended to engage patient partners throughout the whole research process, then several chose to use PCORI. In contrast, when PPI was not to be used throughout the research process, then NIHR was chosen more often. SPOR was chosen by one of the participants, who commented that this approach seemed to emphasize engagement and promote patients' active engagement. The participants chose levels II, III, or IV, and three of them decided to have more than one level of PPI in their studies. One said that the level was chosen to maximize the engagement of the patient partner. There were also comments that PPI brought other perspectives into the research. Nonetheless, it seemed to be difficult for participants to give a definitive explanation for their choice of level of engagement. The participants used between one and six different methods of including PPI. All five PhD students involved an advisory board, and other methods used were workshops, participant observations, meetings, questionnaires, and interviews.This study may be the first step in developing PPI guidance for health-related researchers in a Danish context – where no PPI guidance currently exists at a national level, despite some incipient initiatives , 38. TheThe PPI guidance was developed to assist researchers in choosing appropriate approaches, methods, and levels of engaging patient partners in research. An appropriate approach may be to reflect upon definitions and mission/visions chosen, for example by using Resource I. Moreover, researchers should take in to account the methods that best acknowledge the patient partner’s relevant experiences and adapt the level of involvement (Resource II) to the patient’s qualities in terms of confidence, motivation, knowledge, skills, and willingness to be involved in order to provide an authentic patient perspective (24). It was co-created in a local context through collaborative processes by a cross-disciplinary network of 11 researchers with both a special interest and varying research experiences in PPI. The process entailed a comprehensive review of the literature and in-depth reflections and discussions prior to developing the guidance.Resource I comprised an overview of existing approaches, which may help researchers to reflect on and choose the most appropriate approach for their research project. Resource I was based on the different approaches of five organizations: NIHR , PCORI , SPOR 3, ICPHR , and ValResource II presented five different levels of engagement and methods of collaboration, ranging from information and education to partnership. It was developed to establish the key concepts, principles, and areas for patient partner engagement that would ideally be adopted by more stakeholders. It was based on Health Canada’s Public Involvement Continuum , which wStaley et al.  emphasizPreviously, an involvement matrix had been developed as a tool to support PPI , and we One limitation of this study is that the PPI guidance developed is preliminary and may benefit from other stakeholders’ perspectives and from being tested in different settings and by researchers in different disciplines. Another limitation may be that we considered the researchers and PhD students to be the end-users, which is why we did not include patients in the development process and testing. However, in future development of the guidance, it will be important to include patients as they are key in terms of communication about ways to support patient partnerships and valuing the patient partner role . AnotherThis study has developed two resources to guide researchers in engaging patient partners in health-related research. The study provides insights into the collaborative processes of developing context-specific PPI guidance based on existing approaches and guidelines. Testing of the PPI guidance among researchers showed that they found it to be useful in facilitating reflective thinking around engaging patient partners in health-related research. The study provided knowledge about when and how to use the guidance, but also raised questions about whether the PPI guidance may be useful in communications with patients.Additional file 1. The questionnaire sent out consisting of the System Usability Scale and two additional open-ended questions.Additional file 2. The seven elaborative questions sent out for the PhD students.


The CVRF assessed were overweight, hypertension, smoking and alcohol consumption. The parental physical activity level was assessed using a validated questionnaire, being classified into physically active and inactive parents. The statistical analysis considered all parents and stratification by physical activity level. Results: The prevalence of CVRF was higher in fathers than in mothers . Adolescents with active mothers showed lower prevalence of overweight (13.9% vs. 19.6%), while adolescents with active fathers showed higher prevalence of alcohol consumption (23.5% vs. 16.9%). The CVRF of both fathers and mothers were positively associated with CVRF of adolescents. However, the association of CVRF between adolescents and their parents was mitigated among active parents, while all the CVRF remained associated in physically inactive parents. Conclusion: The parental physical activity level seems to mitigate the association of CVRF between adolescents and their parents. The promotion of an active lifestyle at the family level can contribute to reduce CVRF among adolescents.Introduction: It is hypothesized that children’s habits can be modulated by their parent’s lifestyle. However, it is still not established whether the relationship between cardiovascular risk factors (CVRF) in adolescents and their parents could be attenuated by parental physical activity levels. Objective: This study aimed to analyze the relationship of CVRF between adolescents and their parents according to parental physical activity level. Methods: A school-based sample of 1231 adolescents, 1202 mothers and 871 fathers were included ( Youth is an important period of life in which lifestyle habits are likely to be carried to further life stages, and a high prevalence of risk factors in adolescents is observed ,2,3. It Yang et al.  in a stuFurthermore, it was reported in the literature that physical activity practice is inversely related to obesity, arterial hypertension, smoking and alcohol consumption ,11,12,13The sample was comprised of adolescents, fathers and mothers from the city of Londrina, located in the southern region of Brazil, with a population of approximately 550,000 inhabitants. The adolescents were recruited in a school-based sample process. The director of each selected school was contacted and informed about the research objectives. Afterwards, the researchers explained the research objectives to the students in the classrooms, inviting the adolescents to participate. Those adolescents who agreed to participate received a parental consent form authorizing the participation in the study and two questionnaires about lifestyle habits for their parents if they also agreed to participate.In this study, the six largest schools in the central region of Londrina were selected, as they received students from all regions of the city. To calculate the minimum sample size, it was considered a prevalence of 50% of outcome  , a tolerThis research project was approved by the Ethics and Research Committee of Universidade Estadual de Londrina. Parents and/or guardians signed a consent form authorizing young people to participate in the study.Parental habitual physical activity was assessed by the questionnaire proposed by Baecke et al. . This inThe participants’ overweight was defined though the body mass index by dividing the body weight in kilograms by the height squared in meter. The body mass of the adolescents was measured by a digital scale and the height was measured using a portable wall-fixed stadiometer. The classification of overweight in adolescents was >+1SD cutoffs from specific values proposed by World Health Organization , accordiThe definition of hypertension among adolescents was considered by objective measurements of systolic and diastolic blood pressure by a digital oscillometric device (OMRON HEM-742), which was previously validated for this population . ApproprThe parents were asked whether they had a medical diagnosis of hypertension or were using blood pressure lowering medications. Those parents who answered “yes” for at least one of these conditions were classified as having hypertension.The smoking habit was measured by two specific questions, in which the adolescent and parents answered whether they currently smoked and the number of cigarettes they smoked per day. Those participants who reported they currently smoked at least one cigarette were considered to be smokers.The Brazilian translated and adapted version of the Substance Abuse and Mental Health Services Administration (SAMHSA) questionnaire from the U.S. Department of Health and Human Services  was usedThe Brazilian Criteria for Economic Classification (ABEP)  was usedp < 0.05 and the confidence level adopted was 95%. The statistical package used was SPSS version 25.0.The sample characterization variables were presented as mean and standard deviation for continuous data and in frequency for categorical data. The proportions of cardiovascular risk factors according to the level of physical activity were compared by chi-square test. The association of the cardiovascular risk factors of the parents and their children was analyzed by binary logistic regression, adjusted for the age (parents and adolescents), for the adolescents’ sex, for parental education level and by family’s socioeconomic level. The statistical significance was defined as n = 716). From these adolescents, a total of 2073 parents were assessed, comprised of 1202 mothers (58%) and 871 fathers (42%). Overall, this study included data from 3304 participants. Sample characteristics are presented in A final sample of 1231 adolescents was assessed, 52.8% being females (The association between cardiovascular risk factors in adolescents and their fathers is presented in The results of the current study show that cardiovascular risk factors in adolescents were positively associated with cardiovascular risk factors in their parents. When stratified by parental physical activity level, it was observed that cardiovascular risk factors in adolescents and their parents were strongly associated with physically inactive in comparison to physically active parents.The association of overweight between adolescents and parents in the present study corroborated with a previous study by Lassere et al. , which oOverweight/obesity in adolescents is an important problem from the perspective of social development since it is associated with social discrimination and risk of depression , body imIn addition, the economic situation of the family is an important covariate of the present study. Previous findings reported that parental socioeconomic status can predict the physical activity level of children . The ecoConsidering the association of hypertension between adolescents and their parents, it was observed that this association lost significance in physically active mothers. Corroborating the findings of the present study, Ranasinghe et al. , in a stSmoking in adolescents and their parents was associated only between those who were physically inactive. Andrade et al. , in a stRegarding the association of alcohol consumption between adolescents and their parents, it was observed that this association lost significance in physically active mothers. On the other hand, the alcohol consumption of adolescents and their fathers remained associated regardless of the physical activity level of fathers. Our findings are partially corroborated by the results of Kabwama et al. , in whicUpon the findings of the present study and the current evidence in the literature, the family environment plays a fundamental role in adolescent health. It was observed in a Brazilian sample of 842 adolescents and both their parents that healthy eating habits in parents were associated with healthy eating habits in their children, as well as the opposite: unhealthy eating habits in parents and their children were associated . The famAs limitations of this study, it is important to highlight the cross-sectional design, which precluded cause and effect relationships. Another aspect is that the physical activity practice was evaluated only through a questionnaire, which was susceptible to memory and classification bias. However, the difficulty in using accelerometers in studies carried out in developing countries with a large number of participants is noteworthy. Furthermore, to the best of our knowledge, this was the first study to consider the association of cardiovascular risk factors between adolescents and their parents according to the parental physical activity level.In conclusion, the findings of the present study indicate that cardiovascular risk factors were more associated between adolescents and physically inactive parents than among adolescents whose parents were physically active. Therefore, health promotion actions, especially considering the practice of physical activity, should include the family environment as a whole.