Dataset Information

High patient satisfaction with a simplified BRCA1/2 testing procedure: long-term results of a prospective study.

ABSTRACT: PURPOSE:In the BRCAsearch study, unselected breast cancer patients were prospectively offered germline BRCA1/2 mutation testing through a simplified testing procedure. The purpose of the present study was to evaluate satisfaction with the BRCAsearch testing procedure and, furthermore, to report on uptake rates of prophylactic surgeries among mutation carriers. METHODS:Pre-test information was provided by a standardized invitation letter instead of in-person genetic counseling. The patients were offered contact with a genetic counselor for telephone genetic counseling if they felt a need for that. Mutation carriers were telephoned and given a time for a face-to-face post-test genetic counseling appointment. Non-carriers were informed about the test result through a letter. One year after the test results were delivered, a study-specific questionnaire was mailed to the study participants who had consented to testing. The response rate was 83.1% (448 of 539). RESULTS:A great majority (96.0%) of the responders were content with the method used for providing information within the study, and 98.7% were content with having pursued genetic testing. 11.1% answered that they would have liked to receive more oral information. In an adjusted logistic regression model, patients with somatic comorbidity (OR 2.56; P?=?0.02) and patients born outside of Sweden (OR 3.54; P?=?0.01) were more likely, and patients with occupations requiring at least 3 years of university or college education (OR 0.37; P?=?0.06) were less likely to wanting to receive more oral information. All 11 mutation carriers attended post-test genetic counseling. At a median follow-up of 2 years, the uptake of prophylactic salpingo-oophorectomy was 100%, and the uptake of prophylactic mastectomy was 55%. CONCLUSIONS:Satisfaction with a simplified BRCA1/2 testing procedure was very high. Written pre-test information has now replaced in-person pre-test counseling for breast cancer patients in our health care region.

SUBMITTER: Nilsson MP

PROVIDER: S-EPMC6394590 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

High patient satisfaction with a simplified BRCA1/2 testing procedure: long-term results of a prospective study.

Nilsson Martin P MP Nilsson Erik D ED Borg Åke Å Brandberg Yvonne Y Silfverberg Barbro B Loman Niklas N

Breast cancer research and treatment 20181011 2

<h4>Purpose</h4>In the BRCAsearch study, unselected breast cancer patients were prospectively offered germline BRCA1/2 mutation testing through a simplified testing procedure. The purpose of the present study was to evaluate satisfaction with the BRCAsearch testing procedure and, furthermore, to report on uptake rates of prophylactic surgeries among mutation carriers.<h4>Methods</h4>Pre-test information was provided by a standardized invitation letter instead of in-person genetic counseling. The ...[more]

PMID: 30311024

Similar Datasets

Project description:IntroductionOnabotulinumtoxinA treatment for spasticity is dependent on numerous factors and varies according to selected treatment goals.ObjectiveTo examine real-world onabotulinumtoxinA treatment utilization and effectiveness in patients with upper limb spasticity over 2 years from the Adult Spasticity International Registry (ASPIRE) study.DesignMulticenter, prospective, observational registry (NCT01930786).SettingFifty-four international clinical sites in North America, Europe, and Asia.PatientsAdults (naïve or non-naïve to botulinum toxins for spasticity) with upper limb focal spasticity related to upper motor neuron syndrome across multiple etiologies.InterventionsOnabotulinumtoxinA administered at clinician's discretion.Main outcome measuresOnabotulinumtoxinA utilization, clinician and patient satisfaction.ResultsFour hundred eighty-four patients received ≥1 treatment of onabotulinumtoxinA for upper limb spasticity. Patients were on average 55.1 years old, 50.8% male, predominantly Caucasian (72.3%), and 38.6% were naïve to botulinum toxins. Stroke was the most frequently reported underlying etiology (74.0%). Most patients (81.2%) had moderate to severe spasticity at baseline. The most commonly treated upper limb clinical presentation was clenched fist (79.1% of patients). Across all presentations, onabotulinumtoxinA doses ranged between 5-600U. Electromyography (EMG) was most often utilized to localize muscles (≥57.0% of treatment sessions). Clinicians (92.9% of treatment sessions) and patients (85.7%) reported being extremely satisfied/satisfied that treatment helped manage spasticity, and clinicians (98.6%) and patients (92.2%) would definitely/probably continue onabotulinumtoxinA treatment. One hundred seventy-nine patients (37.0%) reported 563 adverse events (AEs); 15 AEs in 14 patients (2.9%) were considered treatment related. Sixty-nine patients (14.3%) reported 137 serious AEs; 3 serious AEs in 2 patients (0.4%) were considered treatment related. No new safety signals were identified.ConclusionsASPIRE captured the real-world individualized nature of onabotulinumtoxinA utilization for upper limb spasticity over 2 years, with consistently high clinician- and patient-reported satisfaction. Data in this primary analysis will guide clinical use of onabotulinumtoxinA, as well as provide insights to improve educational programs on spasticity management.

Project description:ObjectivesTo evaluate long-term effects, complications and satisfaction among patients treated with AdVance™ and AdVance™ XP slings (AS) at a Norwegian specialist care hospital.Materials and methodsPatients who had an AS implanted due to stress urinary incontinence (SUI) 2009-2016 were identified retrospectively. Demographic and perioperative data were extracted from electronic patient files. We did a patient-reported outcome measure (PROM) survey with the Expanded Prostate Cancer Index Composite (EPIC-26) urinary domain and a Satisfaction Questionnaire (SQ) 2018-2020. Cure was defined as use of ≤1 pad/day.ResultsThe AS was implanted in 165 patients, mainly due to mild to moderate SUI (median leakage 112 g, range 13-589 g/24 h). Preoperative urodynamics showed mild detrusor overactivity (DO) in 11 patients. At 6-week follow-up, 148 patients (90%) were cured. The most common complication was urinary retention (N = 38), transient in 32 patients (range 1-42 days). Two patients were later operated with division of the sling due to persistent retention. During clinical follow-up of up to 12 years, 27 patients were reoperated due to persistent/recurrent incontinence. The PROM survey was sent to 125 patients and 115 (92%) replied at median 73 (20-134) months postoperatively. Ninety-one (79%) used ≤1 pads/day, 97 (85%) were satisfied, one patient-reported pain. Regression analyses showed that failure (>1 pad/day) was significantly associated with a higher amount of leakage preoperatively and at the 6-week follow-up. Total cure rate in the complete cohort was 64% at median 73 (20-134) months follow-up.ConclusionsThe AS shows good and persistent long-term results in patients with mild to moderate SUI. The only identified risk factor for long-term failure was higher amount of leakage preoperatively. The incidence of high body mass index (BMI), DO and previous radiotherapy was low and not significantly associated with failure but is still considered risk factors.

Dataset Information

High patient satisfaction with a simplified BRCA1/2 testing procedure: long-term results of a prospective study.

Publications

High patient satisfaction with a simplified BRCA1/2 testing procedure: long-term results of a prospective study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets