Reem El Sherif

A systematic review of the risk factors associated with the onset and progression of primary brain tumours

&NA; The overall aim of this systematic review was to identify risk factors for onset and natural progression, which were shown to increase, decrease, or have a null association with risk of primary brain tumour. For onset, the project was separated into two phases. The first phase consisted of a systematic search of existing systematic reviews and meta‐analyses. Moderate to high methodological quality reviews were incorporated and summarized with relevant observational studies published since 2010, identified from a systematic search performed in phase 2. For natural progression, only the first phase was conducted. Standard systematic review methodology was utilized. Based on this review, various genetic variants, pesticide exposures, occupational farming/hairdressing, cured meat consumption and personal hair dye use appear to be associated with increased risk of onset amongst adults. The specific EGF polymorphsm 61‐A allele within Caucasian populations and having a history of allergy was associated with a decreased risk. For progression, M1B‐1 antigen was shown to increase the risk. High birth weight, pesticide exposure (childhood exposure, and parental occupational exposure) and maternal consumption of cured meat during pregnancy may also increase the risk of onset of childhood brain tumours. Conversely, maternal intake of pre‐natal supplements (folic acid) appeared to decrease risk. Children with neurofibromatosis 2 were considered to have worse overall and relapse free survival compared to neurofibromatosis 1, as were those children who had grade III tumours compared to lesser grades. HighlightsPrimary brain tumors (PBTs) originate in brain cells, nerves or glands in the brain, or the membranes around the brain (meninges).The annual incidence of PBTs is approximately 10.8 per 100,000.Genetic syndromes associated with PBTs include neurofibromatosis 1 and 2 (NF‐1, NF‐2), Li‐Fraumeni syndrome, Von Hippel‐Lindau (VHL) disease, tuberous sclerosis complex, Turcots syndrome, and Gorlins syndrome.Possible risk factors that could be targeted for prevention include birth weight >4000 g, maternal consumption of cured meats during pregnancy (for pediatric brain tumours), and pesticide exposure.

Determinants of neurological disease: Synthesis of systematic reviews

&NA; Systematic reviews were conducted to identify risk factors associated with the onset and progression of 14 neurological conditions, prioritized as a component of the National Population Health Study of Neurological Conditions. These systematic reviews provided a basis for evaluating the weight of evidence of evidence for risk factors for the onset and progression of the 14 individual neurological conditions considered. A number of risk factors associated with an increased risk of onset for more than one condition, including exposure to pesticides (associated with an increased risk of AD, amyotrophic lateral sclerosis, brain tumours, and PD; smoking (AD, MS); and infection (MS, Tourette syndrome). Coffee and tea intake was associated with a decreased risk of onset of both dystonia and PD. Further understanding of the etiology of priority neurological conditions will be helpful in focusing future research initiatives and in the development of interventions to reduce the burden associated with neurological conditions in Canada and internationally. HighlightsWith population aging, the burden of neurological disease is increasing worldwide.Understanding the factors affecting the onset and progression of neurological disease through systematic review is essential for the development of strategies to reduce the burden of these diseases.Systematic review identified biological, demographic, environmental, genetic, lifestyle and pharmacological risk factors for specific neurological conditions.Several risk factors were associated with the onset of multiple conditions. Pesticides, for example, were associated with an increased risk of Alzheimers disease, amyotrophic lateral sclerosis, primary brain tumours, and Parkinsons disease.Helmet use was associated with a reduction in onset of neurotrauma, as well as all neurologic conditions for which head injury was a risk factor.The findings presented here should be viewed as provisional, pending a more in‐depth evaluation of the weight of evidence.Further research will also serve to fill current data gaps, particularly regarding risk factors for the progression of neurological disease.In the interim, the modifiable risk factors may be considered as potential candidates for the development of targeted interventions to reduce the burden of neurological disease in Canada and internationally.

Perceived outcomes of online parenting information according to self-selected participants from a population of website users

Looking for consumer health/well‐being information online is increasingly common. However, little is known about how people are using information targeted to a specific audience, and what happens as a result of this use. We partnered with ‘Naitre & Grandir’ (N&G), a magazine, website and newsletter offering trustworthy parenting information on child growth, development and health/well‐being. This study was designed to uncover the outcomes of online parenting information. We used the theory‐driven Information Assessment Method (IAM) to study parental perceptions regarding outcomes of specific N&G web pages. A research question was: Is there a difference between parents with a low level of education and income vs. other parents? Over an 8‐month study period, 4007 participants submitted 4862 IAM ratings that suggested N&G information was valuable in terms of situational relevance (93.7%), positive cognitive impact (92.9%), intention to use (85.7%), and expectation for child health/well‐being benefit (82.4%). In addition, results suggested participants with a low level of education and income were more likely to (i) seek and use information for the child of someone else, and (ii) expect being more engaged in decision‐making for their child, and being less worried regarding a problem concerning their child. Our results do not support an association between the combined level of income and education, and perceived outcomes of information. This is the first study to assess outcomes of emailed parenting information from a parental viewpoint. More research is needed to better understand outcomes of targeted online information, which may ultimately contribute to improve peoples health/well‐being.

Toward an information management system for handling parenting information users' comments

Little is known about how their qualitative feedback can be used by information providers. In this study, researchers worked with information providers, ‘Naitre et grandir’ (N&G), to implement the Information Assessment Method (IAM) for assessing and improving parenting information. Qualitative feedback was collected from participants who visited the N&G website during the study period and who completed an IAM questionnaire. Using an Organizational Participatory Research approach, a coding manual for the identification of participants’ comments was created, and developed by the researchers in partnership with information providers. This manual was used by two coders for classifying participants’ comments. A 4‐step process was followed. For each step, a sample of comments were codes, coding was compared, and codes were further refined. At step‐4, the inter‐coder reliability was tested. This led to a reliable coding manual that will be used in the creation of an online system to facilitate the coding of comments, and provide selected comments to N&G editors on a weekly basis. This system can be adapted by other website editors.

Patient Information Aid: Promoting the Right to Know, Evaluate, and Share Consumer Health Information Found on the Internet

Promoting the use of online consumer health information is critical to achieving the democratic right to know and cannot be separated from facilitating the process of finding and understanding this information. In addition, being informed and being able to share information with a clinician are fundamental principles enabling patient engagement in health care and shared decision making. Online consumer health information may contribute to positive patient outcomes such as improved knowledge, and even better health, while in some situations it also leads to increased worry. This type of negative outcome represents a common experience. Our health is important and therefore anything that touches our health can increase anxiety. In our view, worrying is not a disorder; only occasionally it is an incapacitating cyberchondria. Since 2005, our research has been exploring health information outcomes from the consumers’ viewpoint. We are particularly interested in information outcomes such as the types of information use and the types of subsequent health outcomes. Thus, we are currently engaged in a participatory systematic mixed studies review aimed to identify these types of outcomes, and develop a Patient Information Aid, an aid to empower consumers and patients to find, understand, assess, and use online consumer health information.

Overcoming the digital divide? Low education low income parents are equally likely to report benefits associated with online parenting information: Overcoming the Digital Divide? Low Education Low Income Parents Are Equally Likely to Report Benefits Associated with Online Parenting Information

Seeking consumer health and wellbeing information online is increasingly common. However, little is known about how people are using information targeted to a specific audience, and what happens as a result of this use. We partnered with Naitre & grandir (N&G), a magazine, website and newsletter offering trustworthy parenting information on child growth, development and health/wellbeing. This study was designed to uncover the outcomes of using online parenting information. We used the theory‐driven Information Assessment Method (IAM) to study parental perception regarding outcomes of specific N&G webpages. We asked this research question: Is there a difference between parents with a low level of education and income vs. other parents? Over an 18‐month study period, 1886 participants submitted 2532 IAM ratings that suggested N&G information was valuable in terms of situational relevance (97.2%), positive cognitive impact (99.7%), intention to use (97.9%) and expectation of benefits for child health and well‐being (69.6%). Results suggested parents with a low level of education and income were less likely to expect that N&G information can improve their childs health and wellbeing. However, there were no differences regarding parental worries, problem prevention, problem management, information exchange (e.g., with professionals) and confidence in decision‐making associated with information use. Results suggest trustworthy online parenting information for all persons, including parents with a low literacy level, can contribute to overcome the digital divide. To our knowledge, this is the first study to assess outcomes of emailed parenting information from a parental viewpoint. In future research, we will describe health and wellbeing outcomes illustrated through stories collected from parents.

Decisional needs assessment of patients with complex care needs in primary care: a participatory systematic mixed studies review protocol

Introduction Patients with complex care needs (PCCNs) often suffer from combinations of multiple chronic conditions, mental health problems, drug interactions and social vulnerability, which can lead to healthcare services overuse, underuse or misuse. Typically, PCCNs face interactional issues and unmet decisional needs regarding possible options in a cascade of interrelated decisions involving different stakeholders (themselves, their families, their caregivers, their healthcare practitioners). Gaps in knowledge, values clarification and social support in situations where options need to be deliberated hamper effective decision support interventions. This review aims to (1) assess decisional needs of PCCNs from the perspective of stakeholders, (2) build a taxonomy of these decisional needs and (3) prioritise decisional needs with knowledge users (clinicians, patients and managers). Methods and analysis This review will be based on the interprofessional shared decision making (IP-SDM) model and the Ottawa Decision Support Framework. Applying a participatory research approach, we will identify potentially relevant studies through a comprehensive literature search; select relevant ones using eligibility criteria inspired from our previous scoping review on PCCNs; appraise quality using the Mixed Methods Appraisal Tool; conduct a three-step synthesis (sequential exploratory mixed methods design) to build taxonomy of key decisional needs; and integrate these results with those of a parallel PCCNs’ qualitative decisional need assessment (semistructured interviews and focus group with stakeholders). Ethics and dissemination This systematic review, together with the qualitative study (approved by the Centre Intégré Universitaire de Santé et Service Sociaux du Saguenay-Lac-Saint-Jean ethical committee), will produce a working taxonomy of key decisional needs (ontological contribution), to inform the subsequent user-centred design of a support tool for addressing PCCNs’ decisional needs (practical contribution). We will adapt the IP-SDM model, normally dealing with a single decision, for PCCNs who experience cascade of decisions involving different stakeholders (theoretical contribution). Knowledge users will facilitate dissemination of the results in the Canadian primary care network. PROSPERO registration number CRD42015020558.