Dataset Information

Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI).

ABSTRACT: Managing one's own symptoms, medications, treatments, lifestyle, and psychological and social aspects of chronic disease is known as self-management. The Institute of Medicine has identified three categories of epilepsy self-management, including medication management, behavior management, and emotional support. Overall, there has been limited research of interventions measuring epilepsy self-management behaviors. The present study aimed to develop an abbreviated version of the full, previously published, Adult Epilepsy Self-Management Measurement Instrument (AESMMI) using confirmatory factor analysis. Data come from a cross-sectional survey of people with epilepsy. The sample included adults with epilepsy (n = 422), who reported that a clinician diagnosed them with epilepsy or a seizure disorder. We ran confirmatory factor analyses in testing the abbreviated scale. The scale was reduced using a theory-driven data-informed approach. The full AESMMI length was reduced by 40% (from 65 to 38 items) with an overall internal consistency of 0.912. The abbreviated AESMMI retained the 11 subdomains, with Cronbach's alphas from 0.535 to 0.878. This reduced item scale can be useful for assessing self-management behaviors for people with epilepsy or measuring outcomes in self-management research.

SUBMITTER: Escoffery C

PROVIDER: S-EPMC10903544 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI).

Escoffery Cam C Haardoerfer Regine R Bamps Yvan Y McGee Robin R Geiger Demetrius D Quarells Rakale C RC Thompson Nancy J NJ Patel Archna A Anderson Molly M LaFrance W Curt WC

Epilepsy & behavior : E&B 20220505 Pt A

Managing one's own symptoms, medications, treatments, lifestyle, and psychological and social aspects of chronic disease is known as self-management. The Institute of Medicine has identified three categories of epilepsy self-management, including medication management, behavior management, and emotional support. Overall, there has been limited research of interventions measuring epilepsy self-management behaviors. The present study aimed to develop an abbreviated version of the full, previously ...[more]

PMID: 35526460

Similar Datasets

Project description:BackgroundEpilepsy is a common chronic brain disorder globally affecting people of all ages, with the majority living in developing countries. The introduction of epilepsy self-management approaches to help people with epilepsy is urgently needed to influence epilepsy-related outcomes. This 2-site randomised controlled trial building on promising preliminary data is intended to explore this further.MethodsA total of 188 adult people with epilepsy (PWE) attending the neurology clinics at Mulago and Mbarara hospitals and consent to participate in the study. They will be randomised into intervention versus enhanced treatment control (eTAU) study groups. The intervention group will receive 12-week "intensive" educational sessions and a 12-week remotely accessed telephone follow-up stage. The controls will continue in their usual care supplemented by written materials on epilepsy in their preferred language and tailored to the reading level of most patients at the clinic. SMART-U consists of 2 main components: a 12-week "intensive" group format stage and a 12-week remotely accessed telephone follow-up stage. SMART-U will be assessed for acceptability, fidelity, and efficacy compared to eTAU. The primary study outcome is the mean change in cumulative past 24-week seizure frequency (24 weeks prior to the study baseline compared to the 24-week follow-up). Seizure frequency will be via self-report with corroboration by family/support system informants whenever possible. Participants will self-report their seizure frequency (numeric count) that they experienced between baseline and 13 weeks and again between 13 and 24 weeks and the mean change from baseline to 24 weeks in QOL.DiscussionThe curriculum-guided Self-Management intervention for Reducing The epilepsy burden among Ugandans (SMART-U) program is anticipated to reduce the epilepsy burden seizure frequency and improve other health outcomes, including depression, functional status and health resource use.Trial registration number trnNCT06139198.Date of registration14th November 2023.

Project description:Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, healthcare providers' offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact.

Project description:ObjectivesTo evaluate the psychometric properties of the Transfer Assessment Instrument Questionnaire (TAI-Q), a self-assessment measure to evaluate transfer quality compared with clinician-reported measures.DesignParticipants self-assessed transfers from their wheelchair to a mat table using the TAI-Q. For session 1, participants self-assessed their transfer both before and after reviewing a video of themselves completing the transfer (session 1). Self-assessment was completed for another transfer after a 10-minute delay (session 2, intrarater reliability) and after a 1- to 2-day delay (session 3, test-retest reliability). Self-assessment was compared with a criterion standard of an experienced clinician scoring the same transfers with the Transfer Assessment Instrument (TAI) version 4.0 (concurrent validity).Setting2017 National Veterans Wheelchair Games.ParticipantsConvenience sample of full-time wheelchair users (N=44).InterventionsNot applicable.Main outcome measuresTAI-Q and TAI.ResultsAfter video review of their transfer, acceptable levels of reliability were demonstrated for total TAI-Q score for intrarater (intraclass correlation [ICC], 0.627) and test-retest reliability (ICC, 0.705). Moderate to acceptable concurrent validity was demonstrated with the TAI (ICC, 0.554-0.740). Participants tended to underestimate the quality of their transfer (reported more deficient items) compared with the TAI. However, this deficit decreased and reliability improved from pre-video review to post-video review and from session 1 to session 2. The minimum detectable change indicated that a change of 1.63 to 2.21 in the TAI-Q total score is needed to detect a significant difference in transfer skills.ConclusionsWhen paired with video review, the TAI-Q demonstrates moderate to acceptable levels of reliability and validity for the total score. Self-assessment was completed quickly (<5min) and could help to potentially screen for deficiencies in transfer quality and opportunities for intervention.

Project description:BackgroundThe use of social media across the globe has risen incrementally. During the COVID-19 pandemic, these sites undeniably provided new avenues for professional networking but also led to a surge in cases of online misconduct. Professionalism instruments and scales do not assess the digital attitude and behaviour of healthcare professionals (HCPs). The purpose of this study was to identify the domains and items of digital professionalism related to social media use and to validate a self-assessment instrument to assess the digital professionalism of HCPs using social media.MethodsAn instrument development multiphase mixed method study (exploratory sequential) was conducted in two phases: item development and qualitative content validation followed by validation of the instrument. Feedback was taken from 15 experts for qualitative content validation in phase 1. In phase 2, content validity was established through three rounds of modified Delphi. Validity evidence was collected for the content (content validity index), response process (cognitive interviews), internal structure (confirmatory factor analysis), and internal consistency (Cronbach's alpha).ResultsThe 48-item preliminary instrument was reduced to a 28-item instrument with eight domains: self-anonymity, privacy settings, maintenance of boundaries and confidentiality, conflict of interest, accountability, respect for colleagues, and ethics. The content validity index of the scale was 0.91. The reliability and construct validity of the instrument was established by responses from 500 healthcare professionals from multiple hospitals. Confirmatory factor analysis showed a model with a goodness-of-fit index of 0.86, root mean square error of approximation of 0.06, and observed normed χ2 of 2.7. The internal consistency through Cronbach's alpha α was 0.96.ConclusionThe digital professionalism self-assessment instrument (DP-SAI) has an appropriate level of content and measures the construct reliably. It can be used by medical doctors, dental clinicians, nurses, physiotherapists, and clinical pharmacists to self-assess and reflect on their social media practices. This will help to address these issues to enhance the quality of online communication through various social media platforms.

Project description:Abstract Assessing parent readiness to support their child's post-concussion management requires valid and reliable measures. Therefore, the objective of this study was to develop and conduct preliminary tests of reliability and validity of survey measures of parent concussion management knowledge and self-efficacy. Additionally, we tested the hypothesis that among parents of youth who had sustained a concussion, higher scores on measures of knowledge and self-efficacy would predict greater likelihood of engaging in recommended concussion management behaviors during their child's recovery. Measure development occurred with reference to parenting behaviors included in the Center for Disease Control and Prevention's Pediatric Mild Traumatic Brain Injury (mTBI) Management Guidelines. A multi-stage mixed- methods approach was employed, including expert review, cognitive interviews with parents, quantitative item reduction, and tests of reliability and validity. All participants were English-speaking parents of school-aged children in the United States. A stepwise measure development process was followed, with different participant groups across steps (including opt-in web-based survey panels and in-person recruitment from the population of parents of pediatric patients seen in a large pediatric emergency department). In total, 774 parents participated in study activities. The final knowledge index had 10 items, and the final self-efficacy scale had 13 items across four subscales (emotional support, rehabilitation support, monitoring, and external engagement). Internal consistency reliability was 0.63 for the knowledge index and 0.79-0.91 for self-efficacy sub-scales, and validation tests were in the hypothesized directions. In a test of predictive validity, we observed that among parents of youth patients with recent concussion, higher self-efficacy scores at the time of discharge from the pediatric emergency department were positively correlated (r = 0.12) with greater likelihood of engaging in recommended support behaviors at 2-week follow-up. There was no association between concussion management knowledge at discharge and parenting behaviors at follow-up. Parents have the potential to play an important role in concussion management. The measures of knowledge and self-efficacy developed in this study can help identify parent needs and evaluate interventions aiming to support parenting post-concussion.

Project description:BackgroundDecisions about how to manage bothersome symptoms of chronic illness are complex and influenced by factors related to the patient, their illness, and their environment. Naturalistic decision-making describes decision-making when conditions are dynamically evolving, and the decision maker may be uncertain because the situation is ambiguous and missing information. Contextual factors, including time stress, the perception of high stakes, and input from others may facilitate or complicate decisions about the self-care of symptoms. There is no valid instrument to measure these contextual factors. The purpose of this study was to develop and test a self-report instrument measuring the contextual factors that influence self-care decisions about symptoms.MethodsItems were drafted from the literature and refined with patient input. Content validity of the instrument was evaluated using a Delphi survey of expert clinicians and researchers, and cognitive interviews with adults with chronic illness. Psychometric testing included exploratory factor analysis to test dimensionality, item response theory-based approaches for item recalibration, confirmatory factor analysis to generate factor determinacy scores, and evaluation of construct validity.ResultsTen contextual factors influencing decision-making were identified and multiple items per factor were generated. Items were refined based on cognitive interviews with five adults with chronic illness. After a two round Delphi survey of expert clinicians (n = 12) all items had a content validity index of > 0.78. Five additional adults with chronic illness endorsed the relevance, comprehensiveness, and comprehensibility of the inventory during cognitive interviews. Initial psychometric testing (n = 431) revealed a 6-factor multidimensional structure that was further refined for precision, and high multidimensional reliability (0.864). In construct validity testing, there were modest associations with some scales of the Melbourne Decision Making Questionnaire and the Self-Care of Chronic Illness Inventory.ConclusionThe Self-Care Decisions Inventory is a 27-item self-report instrument that measures the extent to which contextual factors influence decisions about symptoms of chronic illness. The six scales (external, urgency, uncertainty, cognitive/affective, waiting/cue competition, and concealment) reflect naturalistic decision making, have excellent content validity, and demonstrate high multidimensional reliability. Additional testing of the instrument is needed to evaluate clinical utility.

Dataset Information

Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI).

Publications

Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI).

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets