Sustaining the National Spinal Cord Injury Registry of Iran (NSCIR-IR) in a Regional Center: Challenges and Solutions

Background: The National Traumatic Spinal Cord Injury Registry in Iran (NSCIR-IR), was implemented initially in three hospitals as a pilot phase from 11 Oct 2015 to 19 Jun 2016 and has been active in eight centers from 19 Jun 2016. Poursina Hospital, a trauma care referral center in Rasht, Guilan Province of Iran is one of the registry sites, and has been involved in registering eligible patients since 1 Jan 2016. This study aimed to identify the challenges and solutions for sustaining the NSCIR-IR in a regional center. Methods: This was a mixed-methods study. For the quantitative analysis, a retrospective observational design was used to measure case capture or case identification rate, mapping cases in the registry against those eligible for registry inclusion amongst the register of hospital admissions. For the qualitative component, data was collected using focus group discussions and semi-structured interviews, followed by thematic analysis. Results: From 19 Jun 2016 to 24 Jan 2018, the proportion of case capture (case identification rate) was 17%. The median time between case identification and data entry to the system was 30.5 d (range: 2 to 193 d). Thematic analysis identified a lack of trained human resources as the most important cause of low case identification rate and delay in data completion. Conclusion: Recruitment and education to increase trained human resources are needed to improve case capture, the timeliness of data input and registry sustainability in a regional participating site

Coexisting Pituitary Adenoma and Suprasellar Meningioma: A Coincidence or Causation Effect? Report of Two Cases and Review of Literature

Background and Importance: The coexistence of pituitary adenoma and another type of brain tumor is a very rare clinical scenario. Even though such a presentation can be an incidental event but the possible pathogenesis of coexistence of different lesions in the sella and suprasellar region has not yet been elucidated. Case Presentation: Two cases of concomitant sellar and suprasellar region tumors are reported. A 37-year-old lady with Prolactinoma and a suprasellar meningioma and a 42-year-old Acromegalic man with suprasellar meningioma and a pituitary adenoma (PA). Conclusion: Both meningiomas were removed transcranially while the Prolactinoma could be managed medically and the growth hormone (GH) secreting adenoma was removed trans-sphenoidally. The visual problems and hormonal imbalances of both patients improved postoperatively and there has been no sign of recurrence of the lesions after a mean of five years follow up. The literature is reviewed on this topic and the possible pathogenesis and management protocol of similar lesions are discussed

Initial Experience with Brain Mapping under Awake Craniotomy for Resection of Insular Gliomas of the Dominant Hemisphere

Background & Importance: Insular lobe is located at the depth of sylvian fissure and is hidden by frontal, temporal and parietal lobes in close vicinity of internal capsule and basal ganglia and adjacent to the speech centers in the dominant hemisphere. Thus, radical resection of insular gliomas can be even more difficult. Brain mapping techniques can be used to maximize the extent of tumor removal and minimize postoperative morbidities. Case Presentation: Patients with newly diagnosed gliomas of dominant insula were enrolled. The exclusion criteria were severe cognitive and/or psychological disturbances, those with difficulty in communication, older than 65 years, severely obese patients, those with difficult airways for intubation and severe cardiovascular or respiratory diseases. All patients were evaluated by contrast enhanced brain MRI, functional brain MRI and diffusion tensor tractography of language and motor systems preoperatively. All were operated under awake craniotomy with the same anesthesiology protocol. Intraoperative monitoring included continuous motor evoked potential, electromyography, electrocorticography, direct electrical stimulation of cortex and subcortical tracts. They were followed with serial neurological examination and imaging. Conclusion: Seven patients were enrolled including 3 man and 4 women with mean age of 44.4 years. 5 patients suffered from low grade and 2 from high grade glioma. The most common clinical presentation was seizure followed by speech disturbance, hemiparesis and memory loss. Extent of tumor resection ranged from 73 to 100%. No mortality or major postoperative neurological deficit was encountered. Seizure control improved in 3/4 of patients with medical refractory epilepsy. One patient suffered from permanent deterioration of speech after surgery. Brain mapping under awake craniotomy may be considered a safe method to maximize the extent of tumor resection, while preserving neurological function in patients with gliomas of the dominant insular lobe

A global, regional, and national survey on burden and Quality of Care Index (QCI) of brain and other central nervous system cancers; global burden of disease systematic analysis 1990-2017.

Primary brain and other central nervous system (CNS) cancers cause major burdens. In this study, we introduced a measure named the Quality of Care Index (QCI), which indirectly evaluates the quality of care given to patients with this group of cancers. Here we aimed to compare different geographic and socioeconomic patterns of CNS cancer care according to the novel measure introduced. In this regard, we acquired age-standardized primary epidemiologic measures were acquired from the Global Burden of Disease (GBD) study 1990-2017. The primary measures were combined to make four secondary indices which all of them indirectly show the quality of care given to patients. Principal Component Analysis (PCA) method was utilized to calculate the essential component named QCI. Further analyses were made based on QCI to assess the quality of care globally, regionally, and nationally (with a scale of 0-100 which higher values represent better quality of care). For 2017, the global calculated QCI was 55.0. QCI showed a desirable condition in higher socio-demographic index (SDI) quintiles. Oppositely, low SDI quintile countries (7.7) had critically worse care quality. Western Pacific Region with the highest (76.9) and African Region with the lowest QCIs (9.9) were the two WHO regions extremes. Singapore was the country with the maximum QCI of 100, followed by Japan (99.9) and South Korea (98.9). In contrast, Swaziland (2.5), Lesotho (3.5), and Vanuatu (3.9) were countries with the worse condition. While the quality of care for most regions was desirable, regions with economic constraints showed to have poor quality of care and require enforcements toward this lethal diagnosis

Adopting Clinical Practice Guidelines for Pharmacologic Management of Acute Spinal Cord Injury from a Developed World Context to a Developing Global Region

Background: Proper utilization of high-quality clinical practice guidelines (CPGs) eliminates the dependence of patients\u27 outcomes on the ability and knowledge of individual health care providers and reduces unwarranted variation in care. The aim of this study was to adapt/adopt two CPGs for pharmacologic management of acute spinal cord injury (SCI) using guideline adaptation methods. Methods: This study was conducted based on the ADAPTE process. Following establishment of an organizing committee and choosing the health topics, we appraised the quality of the CPGs using the Appraisal of Clinical Guidelines for Research & Evaluation II (AGREE II). Then, the authors extracted and categorized suggestions according to Population, Intervention, Professions, Outcomes and Health care setting (PIPOH). The decision-making process was based on systemic evaluation of each suggestion, utilizing a combination of AGREE II scores, the quality of supporting evidence for or against each suggestion and the triad of feasibility, acceptance and adoptability for the Iranian health-care context. Results: Two guidelines were included in the adaptation process. Based on high-quality of these guidelines and the feasibility and adoptability evaluation of the organizing committee, we decided to adopt the suggestion of both guidelines. Overall, seven suggestions were extracted from the source guidelines. Conclusion: This work provides a framework to apply guidelines for acute SCI to the developing regions of the world. Attempts should be made to implement these suggestions in order to improve the health outcomes of Iranian SCI patients

Feasibility and Data Quality of the National Spinal Cord Injury Registry of Iran (NSCIR-IR): A Pilot Study.

BACKGROUND: Spinal cord injury (SCI) is one of the most disabling consequences of trauma with unparalleled economic, social, and personal burden. Any attempt aimed at improving quality of care should be based on comprehensive and reliable data. This pilot investigation studied the feasibility of implementing the National Spinal Cord and Column Injury Registry of Iran (NSCIR-IR) and scrutinized the quality of the registered data. METHODS: From October 2015 to May 2016, over an 8-month period, 65 eligible trauma patients who were admitted to hospitals in three academic centers in mainland Iran were included in this pilot study. Certified registered nurses and neurosurgeons were in charge of data collection, quality verification, and registration. RESULTS: Sixty-five patients with vertebral column fracture dislocations were registered in the study, of whom 14 (21.5%) patients had evidence of SCI. Mechanisms of injury included mechanical falls in 30 patients (46.2%) and motor vehicle accidents in 29 (44.6%). The case identification rate i.e. clinical and radiographic confirmation of spine and SCI, ranged from 10.0% to 88.9% in different registry centers. The completion rate of all data items was 100%, except for five data elements in patients who could not provide clinical information because of their medical status. Consistency i.e. identification of the same elements by all the registrars, was 100% and accuracy of identification of the same pathology ranged from 66.6% to 100%. CONCLUSIONS: Our pilot study showed both the feasibility and acceptable data quality of the NSCIR-IR. However, effective and successful implementation of NSCIR-IR data use requires some modifications such as presence of a dedicated registrar in each center, verification of data by a neurosurgeon, and continuous assessment of patients\u27 neurological status and complications