Refractive surgery as a treatment tool for strabismus: systematic review.

The impact refractive surgery has on preoperative horizontal strabismus is rapidly evolving, and this knowledge can provide valuable clinical context when considering refractive surgery as a treatment for strabismus. 515 studies were identified, of which 26 met the inclusion criteria. Analysis indicated that refractive surgery resulted in an overall decrease in the mean uncorrected postoperative angle of deviation caused partially or fully due to refractive error and highlighted the varied outcome of refractive surgery on nonaccommodative horizontal strabismus with limited evidence to suggest refractive surgery for this type of strabismus. Efficacy of refractive surgery in reducing concomitant horizontal strabismus depends on several factors: type of horizontal ocular deviation, patient age, and extent of refractive error. Refractive surgery can be an effective treatment for refractive accommodative horizontal strabismus in patients with stable, mild to moderate myopia or hyperopia and should be considered with careful patient selection for optimum outcome.

Neurovascular Compression in the Anterior Visual Pathway: A Case Series.

A retrospective review of 29 patients with neurovascular compression syndrome (NVCS) involving the anterior visual pathway was conducted. Various patterns of NVCS and visual defects were identified, most commonly involving the optic nerve and internal carotid artery. Most patients were stable, except one with progressive visual field defects. Although mostly asymptomatic, NVCS can rarely cause compressive optic neuropathy. NVCS should be kept in the differential diagnosis of normal tension glaucoma, especially with progressive visual loss despite treatment. Patients with progressive visual loss may require decompression surgery. Non-contrast computed tomography scan may miss NVCS, and magnetic resonance imaging is diagnostic.

Abducens Nerve Palsy as a Presenting Symptom of Multiple Sclerosis.

Multiple sclerosis (MS) is a chronic disorder characterized by demyelination of the central nervous system. It often presents in women aged 18-35 with neurological symptoms such as visual loss, paresthesia, focal weakness, and ataxia. Demyelination in the brainstem can result in internuclear ophthalmoplegia causing binocular horizontal diplopia. Our report details a patient with horizontal diplopia from an isolated abducens (sixth) nerve palsy as the initial symptom of MS. While rare, this demonstrates the importance of including MS in the differential diagnosis for an isolated abducens nerve palsy, especially in younger patients with no known vascular risk factors.

Idiopathic Intracranial Hypertension: A Case Study of Patient Engagement in the Treatment of a Chronic Disease.

Idiopathic intracranial hypertension is a rare neurological disorder characterized by increased intracranial pressure, which can lead to visual loss and headaches. While medical therapy exists, weight loss is the only disease-modifying treatment. Weight loss is the only therapy that leads to sustained resolution of papilledema. Involving the patient in their disease management through patient engagement is a way to improve disease outcomes, and strengthen the therapeutic relationship. This feature discusses an overview of the disease, a patient's experience, and a physician's perspective.

The top 10 retinoblastoma research priorities in Canada as determined by patients, clinicians and researchers: a patient-oriented priority-setting partnership.

BACKGROUND: Retinoblastoma is a childhood cancer of the eye that can have lifelong effects on patients and families. The purpose of this study was for people affected by retinoblastoma, clinicians and researchers to jointly determine the top 10 retinoblastoma research priorities in Canada. METHODS: An adaptation of the James Lind Alliance Priority Setting Partnership (PSP) methodology was employed. People were invited to participate in any stage of the priority-setting process if they were a resident of Canada, and were a patient with retinoblastoma (or a family member or friend of someone diagnosed with retinoblastoma) or a clinician or researcher interested in retinoblastoma. Patients were full partners in study design and implementation, and result dissemination, through involvement in a national working group (1 patient and 9 nonpatients) and steering committee (4 patients and 11 nonpatients). In phase 1 of the study, participants responded to an online survey that asked, "What questions about retinoblastoma would you like to see answered by research?" In phase 2, the steering committee reviewed and refined the list of survey responses and decided on a list of 30 questions to be ranked by means of the nominal group technique in phase 3, a priority-setting workshop. RESULTS: In total, 175 retinoblastoma research questions were suggested by 59 survey participants (38 patients and 21 nonpatients). The categories with the greatest number of questions were genetics and molecular (45 [25.7%]), second cancer (29 [16.6%]) and psychosocial (27 [15.4%]). The top 10 questions as ranked by the workshop participants (10 patients and 10 nonpatients) fell into 7 categories: second cancer (2 questions), follow-up (2), psychosocial (2), treatment (1), diagnosis (1), global health (1) and miscellaneous (1). The early diagnosis of retinoblastoma was identified as the top retinoblastoma research priority in Canada. INTERPRETATION: The list of priorities will serve as a resource for advocacy groups, research teams and funding agencies that focus on retinoblastoma. The inclusion of researchers as participants was an adaptation of the James Lind Alliance PSP methodology and enriched the research prioritization process.

The Canadian retinoblastoma research advisory board: a framework for patient engagement.

PLAIN ENGLISH SUMMARY: Retinoblastoma is a rare eye cancer that occurs in one or both eyes of infants and young children as a result of errors in the RB1 gene. There are approximately 2000 retinoblastoma survivors in Canada. Those with the heritable form of the disease are at risk of passing the gene to the next generation and developing a second cancer. Many retinoblastoma survivors and families therefore interact with the healthcare system throughout their lives.The retinoblastoma community has a longstanding history of engaging patients in research, however without any formal process. The literature establishes benefits to patient engagement such as research results which are more applicable, credible, and transparent. Building on the established interest among stakeholders, the Canadian Retinoblastoma Research Advisory Board (CRRAB) was established in 2016 to foster sustainable and meaningful collaboration between patients (survivors and family members), advocacy groups, healthcare professionals, and researchers in the retinoblastoma community.The aim of this study was to evaluate the utility of CRRAB in fostering patient engagement in research. Members of CRRAB were surveyed to uncover their attitudes towards and experience with patient engagement in research. Participants perceived CRRAB to provide diverse and accessible opportunities for patient engagement in research and perceived their participation to have a meaningful impact. The results suggest that CRRAB promotes patient engagement in retinoblastoma research, and provides direction to sustain and enhance future patient engagement. ABSTRACT: Background The Canadian Retinoblastoma Research Advisory Board (CRRAB) is a multidisciplinary group, including patients (survivors and family members), advocacy groups, healthcare professionals, and researchers, which aims to establish and sustain patient engagement in retinoblastoma research. The purpose of this study was to describe the development of CRRAB and to uncover members' understanding of and attitudes towards patient engagement in research. As well, to determine their level of engagement.Methods Retinoblastoma patients, healthcare professionals, and researchers provided leadership to co-develop CRRAB. CRRAB members were surveyed by pre- and post-test questionnaire at the 2016 Annual General Meeting to assess experience with, understanding of, and attitudes towards patient engagement in research. A second questionnaire was administered before the 2017 CRRAB meeting to assess awareness and perceived impact of CRRAB activities, and individual engagement in research. Data were analyzed by descriptive statistics and paired t-test (for pre/post-test). Thematic analysis of chart board discussions at both meetings revealed the joint goals of CRRAB and reasons for and barriers to patient engagement.Results In 2016, 21 individuals participated and self-identified as patients (11, 52%), healthcare professionals (6, 29%), and/or researchers (7, 33%) (participants could overlap stakeholder groups). Overall, participants believed that research is relevant to all stakeholders and that patients can have meaningful impact on research. In 2017, 35 individuals participated and identified as patients (21, 60%), healthcare professionals (9, 26%), and/or researchers (8, 23%). 94% of participants were aware of CRRAB initiatives and 67% had participated in at least one over the previous year. Participants perceived that CRRAB provides diverse opportunities and increases accessibility for patient engagement in research, and perceived patient engagement to have meaningful impact on retinoblastoma research. Chart board discussions revealed that participants wanted to be part of CRRAB to increase knowledge, support innovation and patient engagement, and be part of a community. Members most commonly faced barriers including time and cost restraints.Conclusions The results of this study suggest that CRRAB has supported the engagement needs of patients affected by retinoblastoma, and has provided an opportunity for engaging patients in retinoblastoma research. CRRAB will continue to be used as a framework for patient engagement, with improvements based on participant feedback.

Patient and caregiver engagement in research: factors that influence co-enrollment in research.

BACKGROUND: Recruitment of pediatric participants in studies is difficult due to the vulnerability of this population and the scarcity of certain conditions. Co-enrolling in multiple studies is a strategy that may help overcome this problem. Although anecdotal evidence suggests that co-enrollment may increase patient and caregiver burden, few studies have been conducted from the patient perspective. The objective of this quality improvement project was to elicit patient and caregiver opinions on co-enrolling in multiple research studies. METHODS: Patients and caregivers attending the rheumatology clinic at The Hospital for Sick Children were invited to participate in a semi-structured interview or focus group session. Participants were asked to respond to ten prompts, organized into five categories: experience in clinical research, multiple studies, study selection, study timing and other comments. Sessions were recorded, transcribed and analyzed using NVivo 10 to identify common themes. RESULTS: Overall, eighteen caregivers and two patients were included in the study. Participants felt that the level of study involvement, rather than the number of studies, was the biggest factor affecting their decision to participate. Another factor commonly identified was the competing demands of participants' work and family life. Participants indicated that they generally preferred to be informed about all study opportunities and liked to receive this information prior to their appointments. Once informed, they preferred to be approached by the research team while they were waiting for their appointment. CONCLUSION: Patients and caregivers are open to the concept of co-enrolling in multiple research studies. There are multiple factors which influence decisions to co-enroll in studies including the demands of the study and personal limitations. These findings will help guide the design and practices of future research.

Effectiveness of royal jelly supplementation in glycemic regulation: A systematic review.

BACKGROUND: Royal jelly (RJ) has been observed to have therapeutic properties in diabetic individuals, including the reduction of high blood sugar. This systematic review synthesized existing evidence to investigate the effectiveness of RJ supplementation in managing measures of blood glucose. AIM: To determine the effectiveness of RJ supplementation on glycemic responses in healthy and non-insulin dependent diabetic adults, as well as animal models of diabetes. METHODS: This was a systematic review employing the PRISMA strategy. Peer-reviewed, published articles were extracted from several databases using key words related to target population, intervention and outcome and hand-selected for inclusion. Included articles proceeded to data extraction phase, where information on target parameters and effectiveness of treatment was summarized. Following this, the risk of bias for each included study was evaluated. Then, the long-term and immediate effectiveness of RJ supplementation in glycemic control were assessed using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) tool, which rates the quality of evidence. RESULTS: Of 168 articles extracted from database searching, eighteen were included for analysis in this systematic review. Across the studies, studied populations, intervention styles and outcome measures were largely heterogeneous. Despite this, the results in studies indicate a general trend of positive effect of RJ in glycemic regulation in vitro and in vivo. Additionally, some dose-dependent glycemic effects were observed, along with some large effect sizes. The risk of bias for human and animal studies is generally low-unclear risk, although lack of blinding is a serious concern in both categories. Overall, as per the GRADE tool, the quality of evidence is low, and very low for long-term and immediate effectiveness of RJ, respectively. A major limitation affecting evidence quality is the heterogeneity among included studies. Fasting blood glucose and glucose clearance appear to be most affected by RJ supplementation. CONCLUSION: Quality of evidence suggesting that RJ is an effective modulator of glycemic regulation is low for long-term effects of RJ, and very low for immediate effects.

Parental coping with retinoblastoma diagnosis.

OBJECTIVE: To characterize coping and distress among parents of children with retinoblastoma, and to uncover their association with perceived health literacy, self-efficacy, and social support. METHODS: This was a cross-sectional study performed in the retinoblastoma clinics of Beijing Children's Hospital, Jilin Eye Hospital and Changchun Hospital in China. Parents of children with retinoblastoma (n = 104) completed a print Mandarin language questionnaire consisting of four sections: (i) demographic information, (ii) mini-mental adjustment to cancer scale, (iii) hospital anxiety and depression scale, and (iv) perceived health literacy, self-efficacy, and social support scales. Scores were tabulated for each measure and analyzed by bivariate correlation. RESULTS: Moderate anxiety affected 59.2% of parents, and 77.7% experienced low, moderate, or high levels of depression. Combined anxiety and depression was positively correlated with helplessness/hopelessness (R = 0.42, p < .01) and anxious preoccupation (R = 0.247, p < .05), and negatively correlated with perceived self-efficacy (R = -0.228, p < .05). Perceived social support from a partner was negatively correlated with depression (R = -0.207, p < .05) and helplessness/hopelessness (R = -0.271, p < .01). CONCLUSIONS: Knowledge of how parents cope with their child's cancer diagnosis can help healthcare teams understand how best to support their psychosocial needs.