Many studies described caregiver Internet usage and interventional perceptions and needs, but few have examined the impact of web-based interventions on caregivers. More research is needed to produce high-quality evidence in this population.
Highlights d Anterior cingulate cortex (ACC) receives inputs from the somatosensory cortex (S1) d Activation of the S1 inputs increases the nociceptive response in the ACC d This cortico-cortical projection regulates pain-aversive behaviors d Chronic pain enhances the connection between the S1 and the ACC
Background Smartphone apps promise to enhance the reach of evidence-based interventions (cognitive behavior therapy, contingency management and therapeutic education system) for populations with substance use disorders, with minimal disruption to health systems. However, further studies are needed to systematically evaluate smartphone apps targeting alcohol and illicit substances. Objective The aim of this study was to evaluate the functionality, aesthetics, and quality of information of free or low-cost apps claiming to target alcohol, benzodiazepine, cocaine, crack/cocaine, crystal methamphetamine, and heroin use using the validated Mobile App Rating Scale (MARS) and critical content analysis. Methods A systematic search of iTunes and Google Play app stores for free or low-cost apps facilitating recovery was conducted in March 2018 and yielded 904 apps using the keywords described in previous studies (eg, recovery, sobriety, sober, alcohol, and heroin). An interdisciplinary team of clinicians, behavioral informatics, and public health reviewers trained in substance use disorders conducted a descriptive analysis of 74 apps categorized as reducing use. In addition to the MARS scale, a descriptive analysis of relevant apps was conducted by the study team to assess for quality indicators emphasized by expert guidelines and review articles. Results Most apps (n=74) claimed to reduce use or promote abstinence and yielded an overall low median MARS score of 2.82 (0.55) and a wide range of scores (1.64, 4.20). Ratings were also low for engagement (2.75 (0.72)), functionality (3.64 (0.78)), aesthetics (3.03 (0.87)), information (2.82 (0.62)), and satisfaction (1.76 (0.67)) subdomains. Innovative design and content features elicited in the review included initial assessments of substance use following app download, tracking substance use, and related consequences (eg, cost or calorie intake), remote and proximate peer support per geospatial positioning, and allowing users and family members of individuals with substance use disorders to locate 12-step meetings, treatment programs, and mental health services. Few apps integrated evidence-based psychotherapeutic (eg, cognitive behavioral therapy [CBT] or motivational interviewing) and pharmacologic interventions (eg, naloxone or buprenorphine). Conclusions Few commercially available apps yielded in our search integrated evidence-based interventions (eg, extended-release naltrexone, buprenorphine, naloxone, Self-Management and Recovery Training recovery, or CBT), and a concerning number of apps promoted harmful drinking and illicit substance use.
The increased use of PET amyloid imaging in clinical research has sparked numerous concerns about whether and how to return such research test results to study participants. Chief among these is the question of how best to disclose amyloid imaging research results to individuals who have cognitive symptoms that could impede comprehension of the information conveyed. We systematically developed and evaluated informational materials for use in pre-test counseling and post-test disclosures of amyloid imaging research results in mild cognitive impairment (MCI). Using simulated sessions, persons with MCI and their family care partners (N=10 dyads) received fictitious but realistic information regarding brain amyloid status, followed by an explanation of how results impact Alzheimer’s disease risk. Satisfaction surveys, comprehension assessments, and focus group data were analyzed to evaluate the materials developed. The majority of persons with MCI and their care partners comprehended and were highly satisfied with the information presented. Focus group data reinforced findings of high satisfaction and included 6 recommendations for practice: 1) offer pre-test counseling, 2) use clear graphics, 3) review participants’ own brain images during disclosures, 4) offer take-home materials, 5) call participants post-disclosure to address emerging questions, and 6) communicate seamlessly with primary care providers. Further analysis of focus group data revealed that participants understood the limitations of amyloid imaging, but nevertheless viewed the prospect of learning one’s amyloid status as valuable and empowering.
Preventing attrition is a major concern in behavioral weight loss intervention studies. The purpose of this analysis was to identify baseline and six-month predictors associated with participant attrition across three independent clinical trials of behavioral weight loss interventions (PREFER, SELF, and SMART) that were conducted over 10 years. Baseline measures included body mass index, Barriers to Healthy Eating, Beck Depression Inventory-II (BDI), Hunger Satiety Scale (HSS), Binge Eating Scale (BES), Medical Outcome Study Short Form (MOS SF-36 v2) and Weight Efficacy Lifestyle Questionnaire (WEL). We also examined early weight loss and attendance at group sessions during the first 6 months. Attrition was recorded at the end of the trials. Participants included 504 overweight and obese adults seeking weight loss treatment. The sample was 84.92% female and 73.61% white, with a mean (±SD) age of 47.35±9.75 years. After controlling for the specific trial, for every one unit increase in BMI, the odds of attrition increased by 11%. For every year increase in education, the odds of attrition decreased by 10%. Additional predictors of attrition included previous attempts to lose 50–79 pounds, age, not possessing health insurance, and BES, BDI, and HSS scores. At 6-months, the odds of attrition increased by 10% with reduced group session attendance. There was also an interaction between percent weight change and trial (p<.001). Multivariate analysis of the three trials showed education, age, BMI, and BES scores were independently associated with attrition (ps ≤.01). These findings may inform the development of more robust strategies for reducing attrition.
Protecting human participants requires consideration and minimization of the burdens imposed by research. Effective conceptualizations of research burden should include appraisals of indirect burdens depending on research duration, intensity, and invasiveness. Introducing the concept of perceived research burden, we developed, tested, and validated a psychometric instrument for measuring burden, using vignettes of research studies presented to research volunteers and family members. We found high internal consistency of the Perceived Research Burden Assessment (PeRBA), across research scenarios (Cronbach’s alpha .87 – .96). We demonstrated convergent validity by correlating research burden with likelihood for enrolling in a research study. Because perceived research burden was largely unrelated to perceived social support, we interpreted PeRBA as demonstrating discriminant validity.
Introduction Given mounting calls to disclose biomarker test results to research participants, we explored factors underlying decisions by patients with mild cognitive impairment to receive amyloid imaging results. Methods Prospective, qualitative interviews were conducted with 59 participants (30 = mild cognitive impairment patients, 29 = care partners) from the scan arm of a randomized controlled trial on the effects of amyloid PET results disclosure in an Alzheimer Disease Research Center setting. Results Sixty-three percent of the participants were female, with an average age of 72.9 years, and most had greater than a high school level of education (80%). Primary motivations included: (1) better understanding one's mild cognitive impairment etiology and prognosis to plan ahead, and (2) learning one's brain amyloid status for knowledge's sake, regardless of whether the information is actionable. Most participants demonstrated an adequate understanding of the scan's limitations, yet instances of characterizing amyloid PET as a definitive test for Alzheimer's disease occurred. Mention of potential drawbacks, such as negative psychological outcomes, was minimal, even among care partners. Discussion Findings demonstrate a risk of disproportionate focus on possible benefits of testing among amyloid scan candidates and suggest a need to clearly emphasize the limitations of amyloid PET when counseling cognitively impaired patients and their families before testing. Future research should examine whether minimizing drawbacks at the pre-imaging stage has adverse consequences on results disclosure.
Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.
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