scholarly journals 4554 Researchers’ Experiences Working With Community Advisory Boards: How Community Member and Patient Stakeholder Feedback Impacted The Research

2020 ◽  
Vol 4 (s1) ◽  
pp. 89-89
Author(s):  
Tabetha A. Brockman ◽  
Monica L. Albertie ◽  
Noreen A. Stephenson ◽  
Sumedha G. Penheiter ◽  
Christi A. Patten
Keyword(s):  
Mayo Clinic ◽  
Community Member ◽  
Potential Influence ◽  
Research Recruitment ◽  
Advisory Boards ◽  
Research Activities ◽  
Study Population ◽  
The Mean ◽  
Community Advisory Boards

OBJECTIVES/GOALS: To assess researchers’ experiences working with community advisory boards (CABs) and how community member/patient stakeholder feedback impacted the research. METHODS/STUDY POPULATION: Researchers (N = 34) who presented their research to a Mayo Clinic CAB (at MN, AZ, or FL) from 2014-2017 were invited to participate in an interview in-person or by phone averaging 10-15 min. Researchers were asked “In what ways did the feedback you received from the CAB influence your research?” The validated structured 7-item interview included domains assessing potential influence that CABs had on the research: 1) Pre-research (e.g., generated ideas), 2) Infrastructure (e.g., budget preparation), 3) Research design, 4) Implementation (e.g., research recruitment), 5) Analysis, 6) Dissemination, and 7) Post-research (e.g., assist in formulating next steps). RESULTS/ANTICIPATED RESULTS: 17 interviews were completed (8 no longer at Mayo, 9 no response). Researchers presented their study to a CAB a mean of 4 years (range 3-5) before the interview. Researchers reported that the CAB had influenced their research in the following domains: 24% in pre-research, 24% infrastructure, 41% study design, 41% implementation, 6% analysis, 24% dissemination, and 18% for post-research activities. The mean total score was = 1.8 (SD = 1.7, range 0-6), of a possible range of 0-7. DISCUSSION/SIGNIFICANCE OF IMPACT: Impact of CAB feedback on the research was moderate. Ways to enhance impact could include follow-up with researchers and CAB members.

Long-term outcome of transcanalicular microdrill dacryoplasty: a minimally invasive alternative for dacryocystorhinostomy

2020 ◽  
pp. bjophthalmol-2020-316146
Author(s):  
Natasa Mihailovic ◽  
Alina Friederike Blumberg ◽  
Friederike Rosenberger ◽  
Viktoria Constanze Brücher ◽  
Larissa Lahme ◽  
...  
Keyword(s):  
Patient Satisfaction ◽  
Minimally Invasive ◽  
Success Rate ◽  
Complication Rate ◽  
Lacrimal Duct ◽  
Microdrill Dacryoplasty ◽  
Study Population ◽  
The Mean

Background/AimDacryocystorhinostomy (DCR) remains the gold standard therapy for nasolacrimal duct obstruction (NLDO), but is invasive and does not maintain the physiology of the lacrimal pathway. With transcanlicular microdrill dacryoplasty (MDP), there is a minimally invasive alternative surgical approach. This study aimed to present this modern lacrimal duct surgery technique and to evaluate its long-term success rate in a large study population.MethodsThe medical records of 1010 patients with acquired NLDO were retrospectively reviewed. Adult patients who had undergone transcanalicular MDP were included. The evaluation included the following parameters: age, gender, success rate, complication rate, obstruction grade and patient satisfaction. Long-term results regarding patient satisfaction and success rate were evaluated by a telephone survey. Only a complete resolution of symptoms was defined as success.Results793 eyes of 576 patients after transcanalicular MDP could be included in the study. The mean follow-up time was 8.7±0.9 years. Initial surgical success rate was 84.0%. At the time of the follow-up, 57.5% (n=229) still had full resolution of symptoms. The mean patient satisfaction with the procedure was 6.9±3.2 out of 10 points. Heavy bleeding occurred in two cases only (0.25%).ConclusionThis is the first study to show the success rate of microendoscopic lacrimal duct surgery after such a long follow-up period and in such a large study population. Transcanalicular MDP is a minimally invasive technique with a very low complication rate and can be used as an alternative procedure before performing more invasive lacrimal duct surgery such as DCR.

SaGA S, the Short and Graphic A bility Score: an alternative scoring method for the motor components of the Multiple Sclerosis Functional C omposite

2004 ◽  
Vol 10 (2) ◽  
pp. 231-242 ◽  
Author(s):  
C Vaney ◽  
S Vaney ◽  
D T Wade
Keyword(s):  
Multiple Sclerosis ◽  
Correlation Coefficients ◽  
Scoring Method ◽  
Left Hand ◽  
Disability Status ◽  
Study Population ◽  
The Mean ◽  
One Year ◽  
Independent Assessment

The timed performances of the 10-m timed walk (TMTW) and the nine-ho le peg test (NHPT) of 881 consecutive patients with multiple sclerosis (MS) undergoing a rehabilitation stay, were expressed as a logarithmic function of time in two subscores to form a composite score called the Short and G raphic A bility Score (SaGA S). The subscores (sS) were constructed in such a way that any interval of 0.5 unit corresponds to a change of 25% in the tests. The SaGA S was computed as the mean of four subscores: SaGAS=(2×2-TMTWsS+NHPTsS right hand+NHPTsS left hand). With the aid of a nomogram, the timed values of the tests are easily transformed into the corresponding subscores, which are then displayed graphically to facilitate follow-up over time. The correlation coefficients between the SaGA S and the two motor components of the MS Functional C omposite (MSFC) (r =0.987), the Expanded Disability Status Scale (EDSS)(r = -0.83), the Nottingham EADL Index (r =0.80) and the Rivermead Mobility Index (RMI) (r =0.90) were all statistically significant (P B-0.001), supporting the validity of the measure. SaGA S had a similar sensitivity to the RMI, but was significantly more sensitive than the EDSS in detecting changes occurring during the rehabilitation stay (14.9% versus 5.0%; P B-0.001) and over a one-year follow-up (35.3% versus 19.7%; P B-0.001). C ompared with the motor components of the MSFC, with which it shares several features, SaGA S has several advantages: it does not depend on the stratification of the study population; it does not skew the results of the NHPT towards improvement at the lower end; and it offers an independent assessment of both hands. SaGA S is a simple, intuitive, nonphysician-based measure, which could provide consistent scoring in future clinical trials.

Ventral correction of postsurgical cervical kyphosis

2003 ◽  
Vol 98 (1) ◽  
pp. 1-7 ◽  
Author(s):  
Michael P. Steinmetz ◽  
Christopher D. Kager ◽  
Edward C. Benzel
Keyword(s):  
Clinical Status ◽  
Deformity Correction ◽  
Cervical Kyphosis ◽  
Content Type ◽  
Symptom Profile ◽  
Head Positioning ◽  
Study Population ◽  
The Mean ◽  
Fine Print

Object. Cervical kyphotic deformation may develop after surgery involving either the ventral or dorsal approach. Regardless of the cause, the development of a cervical kyphotic deformity should be avoided, if possible, and corrected if present, when appropriate. The authors describe their experience with a technique for the ventral correction of iatrogenic (postoperative) cervical kyphosis. Methods. A retrospective review of cases involving correction of postoperative iatrogenic cervical kyphosis via an ventral approach was performed. The authors conducted an ventral approach to kyphosis correction. The procedure required specific head positioning (in extension), convergent distraction pins, and an ventrally placed implant (axially dynamic when appropriate) with multiple points of fixation including at least one point of intermediate fixation. The pre- and postoperative sagittal angle and clinical status were evaluated. During a nearly 14-month period, 12 patients met the inclusion criteria. Ten patients underwent a minimum of 6 months of follow up. They comprised the study population. Most patients presented with mechanical neck pain as part of their symptom profile. The mean magnitude of deformity correction (pre- to postoperative) was 20° of lordosis. The mean postoperative sagittal angle was 6° of lordosis. The mean change in the sagittal angle during the follow-up period was 2.2° of lordosis. Conclusions. The ventral approach to correction of cervical deformity led to the achievement of lordosis in all but one patient. This posture was effectively maintained during the follow-up period. All patients exhibited improvement postoperatively; three experienced complete resolution of their preoperative symptoms. When symptoms are related to postsurgical kyphosis, deformity correction should be considered. Such a procedure may be performed effectively via an ventral approach in most circumstances.

Advances in the Treatment and Outcome of Brainstem Cavernous Malformation Surgery

Neurosurgery ◽  
2011 ◽  
Vol 68 (2) ◽  
pp. 403-415 ◽  
Author(s):  
Adib A. Abla ◽  
Gregory P. Lekovic ◽  
Jay D. Turner ◽  
Jean G. de Oliveira ◽  
Randall Porter ◽  
...  
Keyword(s):  
Surgical Treatment ◽  
Patient Outcomes ◽  
Perioperative Complications ◽  
Low Flow ◽  
Tube Placement ◽  
Cerebrospinal Fluid Leakage ◽  
Cavernous Malformations ◽  
Study Population ◽  
The Mean

Abstract BACKGROUND: Brainstem cavernous malformations (BSCMs) are relatively uncommon, low-flow vascular lesions. Because of their relative rarity, relatively little data on their natural history and on the efficacy and durability of their treatment. OBJECTIVE: To evaluate the long-term durability of surgical treatment of BSCMs and to document patient outcomes and clinical complications. METHODS: The charts of all patients undergoing surgical treatment of BSCM between 1985 and 2009 were reviewed retrospectively. The study population consisted of 300 patients who had surgery for BSCM. Forty patients were under 19 years of age at surgery; pediatric BSCMs have been reported separately. Patient demographics, lesion characteristics, surgical approaches, and patient outcomes were examined. RESULTS: The study population consisted of 260 adult patients with a female-to-male ratio of 1.5 and mean age of 41.8 years. Of the 260 patients, 252 presented with a clinical or radiographic history of hemorrhage. The mean follow-up in 240 patients was 51 months. The mean Glasgow Outcome Scale on admission, at discharge, and at last follow-up was 4.4, 4.2, and 4.6. Postoperatively, 137 patients (53%) developed new or worsening neurological symptoms. Permanent new deficits remained in 93 patients 3(36%). There were perioperative complications in 74 patients (28%); tracheostomy, feeding tube placement, and cerebrospinal fluid leakage were most common. Eighteen patients (6.9%) experienced 20 rehemorrhages. Twelve patients required reoperation for residual/recurrent BSCM. The overall annual risk of postoperative rehemorrhage was 2%/patient. CONCLUSION: Although BSCM surgery has significant associated risks, including perioperative complications, new neurological deficits, and death, most patients have favorable outcomes. Overall, surgery markedly improved the risk of rehemorrhage and related symptoms and should be considered in patients with accessible lesions.

scholarly journals Prophylactic adjacent-segment vertebroplasty following kyphoplasty for a single osteoporotic vertebral fracture and the risk of adjacent fractures: a retrospective study and clinical experience

2016 ◽  
Vol 25 (4) ◽  
pp. 528-534 ◽  
Author(s):  
Martin C. Eichler ◽  
Christian Spross ◽  
Alexander Ewers ◽  
Ryan Mayer ◽  
Fabrice A. Külling
Keyword(s):  
Retrospective Study ◽  
Osteoporotic Fractures ◽  
Adjacent Segment ◽  
Single Segment ◽  
Vertebral Body Fractures ◽  
Study Population ◽  
The Mean ◽  
Adjacent Fractures ◽  
Adjacent Vertebra

OBJECTIVE This study investigated the benefit of prophylactic vertebroplasty of the adjacent vertebrae in single-segment osteoporotic vertebral body fractures treated with kyphoplasty. METHODS All patients treated with kyphoplasty for osteoporotic single-segment fractures between January 2007 and August 2012 were included in this retrospective study. The patients received either kyphoplasty alone (kyphoplasty group) or kyphoplasty with additional vertebroplasty of the adjacent segment (vertebroplasty group). The segmental kyphosis with the rate of adjacent-segment fractures (ASFs) and remote fractures were studied on plain lateral radiographs preoperatively, postoperatively, at 3 months, and at final follow-up. RESULTS Thirty-seven (82%) of a possible 45 patients were included for the analysis, with a mean follow-up of 16 months (range 3–54 months). The study population included 31 women, and the mean age of the total patient population was 72 years old (range 53–86 years). In 21 patients (57%), the fracture was in the thoracolumbar junction. Eighteen patients were treated with additional vertebroplasty and 19 with kyphoplasty only. The segmental kyphosis increased in both groups at final follow-up. A fracture through the primary treated vertebra (kyphoplasty) was found in 4 (22%) of the vertebroplasty group and in 3 (16%) of the kyphoplasty group (p = 0.6). An ASF was found in 50% (n = 9) of the vertebroplasty group and in 16% (n = 3) of the kyphoplasty group (p = 0.03). Remote fractures occurred in 1 patient in each group (p = 1.0). CONCLUSIONS Prophylactic vertebroplasty of the adjacent vertebra in patients with single-segment osteoporotic fractures as performed in this study did not decrease the rate of adjacent fractures. Based on these retrospective data, the possible benefits of prophylactic vertebroplasty do not compensate for the possible risks of an additional cement augmentation.

scholarly journals PHARMACORESISTENT TEMPORAL LOBE & EXTRA TEMPORAL EPILEPSY: OUTCOMES AFTER SURGERY.

2021 ◽  
Vol 5 (6) ◽  
Author(s):  
Govind Mangal ◽  
Uday Bhaumik ◽  
Giriraj Prajapati ◽  
Poojan Thakor
Keyword(s):  
Temporal Lobe Epilepsy ◽  
Temporal Lobe ◽  
Age Of Onset ◽  
Hippocampal Sclerosis ◽  
Temporal Lobectomy ◽  
Temporal Epilepsy ◽  
Post Surgery ◽  
Study Population ◽  
The Mean

Background: Our aim was to follow up patients postoperatively to identify seizure remission and relapse after surgery, to enable individuals considering surgery to make informed choices. Methods: Ninteen consecutive patients operated for drug resistant Temporal lobe & extra temporal lobe epilepsy between 2019 and 2020, at our centre. All the patients had at least one year post surgery follow-up. Results: The mean age of study population was 20.87 ± 10.08 years. The mean age of onset of epilepsy in study population was 14.9 ± 8 years. There were no acute post operative seizures. The most common histpathological finding was hippocampal sclerosis in 15 patients. The patients were followed up and 15 were in the class 1 of engel classification. 2 in class 2, rest had one each Conclusion: Following surgery approx half of patients were seizure free and Engel's favourable outcome was noted. The predictors of unfavourable outcome were younger age of onset and pronged duration and of epilepsy Keywords: Temporal lobe epilepsy, temporal lobectomy, amygdalohippocampectomy, outcome, extra temporal lobe epilepsy, extra temporal lobectomy

The Accuracy Of a Parent-Administered Bleeding Assessment Tool In a Pediatric Hematology Clinic

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 1108-1108
Author(s):  
Abigail T. Lang ◽  
Linda P. Grooms ◽  
Mollie Sturm ◽  
Michelle Walsh ◽  
Terah Koch ◽  
...  
Keyword(s):  
Parent Education ◽  
Research Funding ◽  
Kappa Statistic ◽  
Weighted Kappa ◽  
Education Level ◽  
Weighted Kappa Statistic ◽  
Study Population ◽  
The Mean ◽  
Bleeding Score

Abstract Background The introduction of bleeding assessment tools (BATs) to quantify the presence and severity of commonly reported bleeding symptoms has received increased interest over the past decade. Bleeding scores, along with laboratory data and family history, can assist the clinician in the assessment of a suspected mild bleeding disorder (MBD). While clinician-administered BATs have been utilized frequently, implementation and validation of the accuracy of a self-report or parent-proxy BAT have yet to be investigated. The primary objective of this study was to determine the accuracy of a parent-administered BAT by measuring the level of agreement between parent and clinician responses to the Condensed MCMDM-1VWD Bleeding Questionnaire. Methods Our study population included children aged 0-19 years presenting to the hematology clinic at Nationwide Children's Hospital (Columbus, OH) for initial evaluation of a suspected MBD or for follow-up evaluation of a previously diagnosed MBD. At the time of the visit, the parent/caregiver completed a short demographic survey and a modified version (targeted for a 6th grade comprehension level) of the Condensed MCMDM-1VWD Bleeding Questionnaire. The treating provider also completed the BAT by interviewing the patient and his/her caregiver; clinicians were blinded to the results of the parent BAT. Both the parent and clinician versions of the BAT were scored and analyzed in the same manner for ease of comparison. We calculated the percentage of agreement and weighted kappa statistic for individual bleeding symptoms as well as the mean across all questionnaire items. We also examined the agreement between caregiver and clinician responses in regards to patient age, gender, diagnosis (new versus follow-up patient), and parent education level. Results To date, we have enrolled 55 eligible patients. The overall mean bleeding score (BS) as calculated from the parent-report BAT was 5.98 (range: -1-25), while the mean BS for the clinician-report BAT was 3.87 (range: 0-16). The mean percentage of agreement between parents and clinicians across all items was 76% (range: 58-98%). The mean weighted kappa statistic was 0.31 (range: -0.04-0.79), representing fair agreement (based on Landis and Koch criteria); the mean Gwet's AC1 (an alternative kappa statistic) was 0.72 (range: 0.48-0.98), representing substantial agreement. Overall, 20% of parent and clinician total bleeding scores matched exactly, and an additional 42% of parent and clinician scores varied by only one to two points. 82% of the study population had an abnormal total bleeding score (defined as ≥2) when rated by parents and 78% had an abnormal total score when rated by clinicians (82% agreement, kappa = 0.43, Gwet's AC1 = 0.73). Tests for equal kappa coefficients did not show significant differences in agreement between parents and clinicians when compared by patient gender, age, diagnosis, or parent education level. Discussion To our knowledge, the results of a patient and/or parent-administered BAT score have not been studied to determine their accuracy and feasibility of use as a screening method for patients with a suspected MBD. While parents tended to over-report bleeding as compared to clinicians, overall, parent and clinician bleeding scores were similar in our study, and these results lend support for the potential use of a modified proxy-report BAT in a clinic setting. Additional research into the construct of the parent-administered BAT is needed to further improve the accuracy of parent-reported bleeding symptoms. Disclosures: Lang: OSUCOM Bennett Medical Student Research Scholarship: Research Funding; ASH HONORS Award: Research Funding.

Myringoplasty: a comparison of bismuth iodoform paraffin paste gauze pack and tri-adcortyl ointment ear dressing

2006 ◽  
Vol 121 (4) ◽  
pp. 329-332 ◽  
Author(s):  
V Nakhla ◽  
Y M Takwoingi ◽  
A Sinha
Keyword(s):  
Retrospective Study ◽  
Success Rate ◽  
Tympanic Membrane ◽  
Surgical Approach ◽  
Suitable Alternative ◽  
Significant Difference ◽  
Study Population ◽  
The Mean ◽  
Gauze Pack

Objectives: To assess the myringoplasty graft take rate, comparing two methods of post-operative ear packing: bismuth iodoform paraffin paste (BIPP) gauze versus tri-adcortyl ointment (TAO).Methods: A retrospective study of patients who had undergone myringoplasty at our department within a three-year period was undertaken. Data, including age, site and size of perforation, grade of surgeon, surgical approach, use of post-operative ear dressings, complications, and audiometric outcome, were collected from the patient notes and analysed. The overall success rate of the operation (with success being defined as an intact tympanic membrane at six months) was noted.Results: One hundred and seventy myringoplasties were performed over the study period, but data were complete on 154 patients and these constituted the study population. Age ranged from nine to 71 years (mean age 34 years) and the mean follow-up period was seven months. Consultants performed 62 per cent of the operations, with an 85 per cent success rate, whereas trainees performed the remaining 38 per cent, with a success rate of 73 per cent (p=0.059). The overall success rate was 80 per cent; 79 per cent for BIPP and 83 per cent for TAO (p=0.55), and 87 per cent for small perforations and 75 per cent for subtotal perforations (p=0.22). There was audiometric improvement in 74 per cent of cases.Conclusion: We found no significant difference in outcome between patients packed with TAO and BIPP. Packing with TAO is therefore a suitable alternative to BIPP gauze ear dressing following myringoplasty.

OP27 Engaging Patients: The EuroCAB Programme

2019 ◽  
Vol 35 (S1) ◽  
pp. 6-6
Author(s):  
François Houyez ◽  
Rob Camp
Keyword(s):  
Rare Diseases ◽  
Controlled Trial ◽  
Target Population ◽  
Pricing Policy ◽  
Health Technologies ◽  
Advisory Boards ◽  
Patient Reported ◽  
Community Advisory Boards

IntroductionWhen developing a health technology that requires clinical studies, developers institute working relations with clinical investigators. In certain diseases areas, patients' representatives create their own advisory boards, which proved their utility in the early 90s, in particular for the development of products to treat HIV infection. Inspired by this model, where patients with a same disease join and meet with relevant developers and discuss all aspects of the research, the European Organisation for Rare Diseases (EURORDIS) proposes a new programme of such Community Advisory Boards for Rare Diseases (CAB).MethodsFor this programme, EURORDIS invites developers to sign a Charter of principles when engaging with patients, and provides guidelines on CABs, together with a mentoring programme for patients’ networks that are less experienced with the development and the evaluation of health technologies. CABs are driven by patients who set their agenda, who sign a Memorandum of Understanding with each developer, and who organise the sessions. Sessions typically last for two to four days during which different meetings with different developers can take place, or trainings. All meetings can take place under confidentiality arrangements, and minutes are written to keep track and to follow-up with all points discussed. Participants and agendas are made publicResultsAs of 2018, four CABs exist and operate (for tuberous sclerosis complex, for scleroderma, for cystic fibrosis, for Duchenne muscular dystrophy) and 18 others are in discussion with many due to start in 2019. Topics discussed cover the target population, the study feasibility, the endpoints including patient reported outcomes, the comparator choice and/or the acceptance of a placebo controlled trial, the quality of life, the practical aspects of the trials, and the identification of previously unknown or unmet patient needs/preferences. For products which are more advanced in their life-cycle, discussions can also cover compassionate use, pricing policy, relative efficacy etc.ConclusionsThis represents a well-structured programme for the engagement of patients, where collective thinking and exchange between different patients ensure high quality dialogue with developers and can inform HTA also.

Risk of Asymptomatic Gallstones Becoming Symptomatic After Laparoscopic Sleeve Gastrectomy

2021 ◽  
pp. 000313482110111
Author(s):  
Ozan Şen ◽  
Ahmet G. Türkçapar
Keyword(s):  
Body Mass Index ◽  
Sleeve Gastrectomy ◽  
Retrospective Study ◽  
Laparoscopic Sleeve Gastrectomy ◽  
Abdominal Ultrasound ◽  
Concomitant Cholecystectomy ◽  
Study Population ◽  
The Mean ◽  
Asymptomatic Gallstones

Background Whether concomitant cholecystectomy is needed during laparoscopic sleeve gastrectomy (LSG) in patients with asymptomatic cholelithiasis is controversial. In this study, our aim is to show the follow-up results in patients with asymptomatic cholelithiasis who underwent LSG alone. Methods Patients undergoing primary LSG between March 2018 and September 2020 with asymptomatic gallbladder stones were included in this retrospective study. All patients underwent abdominal ultrasound (US) before surgery. Patients’ demographics and postoperative outcomes were recorded. Results A total of 180 patients underwent primary LSG and completed the 1-year follow-up. The study population consisted of 42 patients (23%) with asymptomatic cholelithiasis. The mean age was 41.1±7.1 years (31-56, 63% female), and mean body mass index (BMI) was 44 ± 6.7 kg/m2. Average BMI decreased to 31.1 ± 4.7 kg/m2 at 6 months and to 27.3 ± 3.6 kg/m2 at 1 year. The average follow-up period was 17 ± 5.7 months (range, 12-28 months). Of the 42 patients, only 1 patient (2.4%) became symptomatic during the follow-up period. Discussion We do not recommend cholecystectomy in patients with asymptomatic gallstones during the same session with LSG. An observational approach should be adopted for these patients.

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