RESUMEN
INTRODUCTION: In medical radiation science (MRS), radiology information systems (RISs) record patient information such as name, gender and birthdate. The purpose of RISs is to ensure the safety and well-being of patients by recording patient data accurately. However, not all RISs appropriately capture gender, sex or other related information of transgender and gender-diverse (TGD) patients, resulting in non-inclusive and discriminatory care. This review synthesises the research surrounding the limitations of RISs preventing inclusivity and the features required to support inclusivity and improve health outcomes. METHODS: Studies were retrieved from three electronic databases (Scopus, PubMed and Embase). A quality assessment was performed using the Johns Hopkins Nursing Evidence-Based Practice Research and Non-Research Evidence Appraisal Tools. A thematic analysis approach was used to synthesise the included articles. RESULTS: Eighteen articles were included based on the predetermined eligibility criteria. The pool of studies included in this review comprised primarily of non-research evidence and reflected the infancy of this research field and the need for further empirical evidence. The key findings of this review emphasise how current systems do not record the patient's name and pronouns appropriately, conflate sex and gender and treat sex and gender as a binary concept. CONCLUSION: For current systems to facilitate inclusivity, they must implement more comprehensive information and data models incorporating sex and gender and be more flexible to accommodate the transient and fluid nature of gender. However, implementation of these recommendations is not without challenges. Additionally, further research focused on RISs is required to address the unique challenges MRS settings present to TGD patients.
RESUMEN
BACKGROUND: Despite advances in hydrocephalus shunt technology and improvement in hydrocephalus management, many patients have chronic disability and require multiple surgeries throughout their lifetime. There is limited data from patients' perspective regarding the impact of shunt devices on quality-of-life. METHODS: A cross-sectional survey was developed to evaluate the impact of shunt devices on patient quality-of-life. The survey was distributed via social media platforms of the Hydrocephalus Association, and patients self-selected to anonymously complete the online questionnaire. A literature review was performed to contextualize the findings from the survey. RESULTS: A total of 562 survey responses were obtained from a network encompassing 35,000 members. The mean age was 30âyears old (0.5-87), and 65% identified as female. Eighty one percent underwent at least 1 shunt revision surgery, with a reported average of 10 shunt revision surgeries per patient (1-200 surgeries). Occlusion, shunt migration and infection were the leading causes for revision at 60%, 47%, and 35%, respectively. In addition, 72% of patients reported pain and discomfort from the device, and 68% expressed avoidance of certain activities due to "fear of bumping shunt." Despite numerous articles discussing shunt technology, a review of the literature indicated a paucity of studies specifically evaluating the burden of shunt devices from a patient/caregiver perspective. CONCLUSIONS: The findings from this study suggest long-term physical and psychosocial burden associated with shunt devices. Importantly, this study highlights the need for concerted efforts to develop validated tools to study patient reported outcomes as it relates to neurocranial implanted devices.