Growing pains: Lessons learned from a failed mobile mindfulness clinical trial for patients with complex care needs.
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SUBMITTER: Hood P
PROVIDER: S-EPMC8777278 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Emerging adulthood (18-30 years), in the Western world, is often a time of identity development and exploration, focusing on areas of work, relationships and education. Individuals with chronic illnesses, such as chronic pain, may be more vulnerable to facing challenges during this time. This study aims to investigate the needs of young adults (YAs) attending a tertiary level National Health Service (NHS) Pain Management Programme (PMP) Service in the United Kingdom; exploring how these needs may translate on to clinical assessment and the delivery of rehabilitation interventions.This is a descriptive qualitative study influenced by phenomenological approaches. YA with a diagnosis of chronic pain were recruited and assigned to one of four focus groups facilitated by a clinical psychologist and occupational therapist. A semi-structured interview guide was used to help facilitate the group discussion.Qualitative analysis identified four key themes in understanding the needs of YAs with chronic pain: (1) thwarted opportunities, (2) peer separation, (3) perceived illness validity in the context of age and (4) dependency/parental enmeshment.The emerging adulthood literature provides a valuable framework for examining a normal developmental trajectory and highlights the relevance of age-related processes in YAs with chronic pain. The idealisation of opportunity and the role of perception in this developmental phase both appear relevant. It is significant that emotional stability is not yet established in emerging adulthood and links to unhelpful management strategies that may be differentiated from older populations are identified.
| S-EPMC5521350 | biostudies-other
Project description:CrowdsourcingCrowdsourcing is the practice of obtaining needed ideas, services, or content by requesting contributions from a large group of people. Amazon Mechanical Turk is a web marketplace for crowdsourcing microtasks, such as answering surveys and image tagging. We explored the limits of crowdsourcing by using Mechanical Turk for a more complicated task: analysis and creation of wind simulations.Harnessing crowdworkers for engineeringOur investigation examined the feasibility of using crowdsourcing for complex, highly technical tasks. This was done to determine if the benefits of crowdsourcing could be harnessed to accurately and effectively contribute to solving complex real world engineering problems. Of course, untrained crowds cannot be used as a mere substitute for trained expertise. Rather, we sought to understand how crowd workers can be used as a large pool of labor for a preliminary analysis of complex data.Virtual wind tunnelWe compared the skill of the anonymous crowd workers from Amazon Mechanical Turk with that of civil engineering graduate students, making a first pass at analyzing wind simulation data. For the first phase, we posted analysis questions to Amazon crowd workers and to two groups of civil engineering graduate students. A second phase of our experiment instructed crowd workers and students to create simulations on our Virtual Wind Tunnel website to solve a more complex task.ConclusionsWith a sufficiently comprehensive tutorial and compensation similar to typical crowd-sourcing wages, we were able to enlist crowd workers to effectively complete longer, more complex tasks with competence comparable to that of graduate students with more comprehensive, expert-level knowledge. Furthermore, more complex tasks require increased communication with the workers. As tasks become more complex, the employment relationship begins to become more akin to outsourcing than crowdsourcing. Through this investigation, we were able to stretch and explore the limits of crowdsourcing as a tool for solving complex problems.
| S-EPMC4575153 | biostudies-literature
Project description:There is scant published experience with implementing complex, multistep computerized practice guidelines for the long-term management of chronic diseases. We have implemented a system for creating, maintaining, and navigating computer-based clinical algorithms integrated with our electronic medical record. This article describes our progress and reports on lessons learned that might guide future work in this field. We discuss issues and obstacles related to choosing and adapting a guideline for electronic implementation, representing and executing the guideline as a computerized algorithm, and integrating it into the clinical workflow of outpatient care. Although obstacles were encountered at each of these steps, the most difficult were related to workflow integration.
| S-EPMC150369 | biostudies-literature
Project description:BackgroundPersons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers' met and unmet needs and to describe their experience.MethodsThis is a sequential mixed methods explanatory design: Phase 1: cross-sectional study to describe the met and unmet health and social care needs of community-dwelling persons living with dementia using Camberwell Assessment of Need of the Elderly and Carers' Assessment for Dementia tools. Phase 2: qualitative descriptive study to explore and understand the experiences of persons living with dementia and caregivers with the use of social and healthcare services, using semi-structured interviews. Data from phase 1 was analyzed with descriptive statistics, and from phase 2, with inductive thematic analysis. Results from phases 1 and 2 were compared, contrasted and interpreted together.ResultsThe mean total number of needs reported by the patients was 5.03 (4.48 and 0.55 met and unmet needs, respectively). Caregivers had 0.52 met needs (3.16 unmet needs). The main needs for both were memory, physical health, eyesight/hearing/communication, medication, looking after home, money/budgeting. Three categories were mentioned by the participants: Persons living with dementia and caregiver's attitude towards memory decline, their perception of community health services and of the family medicine practice.ConclusionsOur study confirms the findings of other studies on the most common unmet needs of the patients and caregivers that are met partially or not at all. In addition, the participants were satisfied with access to care, and medical services in primary practices, being confident in their family. Our results indicate persons living with dementia and their caregivers need a contact person, a clear explanation of their dementia diagnosis, a care plan, written information on available services, and support for the caregivers.
| S-EPMC8441033 | biostudies-literature
Project description:Self-management is critical to achieving diabetes treatment goals. Mobile phones and Bluetooth® can supportself-management and lifestyle changes for chronic diseases such as diabetes. A mobile health (mHealth) research platform--the Few Touch Application (FTA)--is a tool designed to support the self-management of diabetes. The FTA consists of a mobile phone-based diabetes diary, which can be updated both manually from user input and automatically by wireless data transfer, and which provides personalized decision support for the achievement of personal health goals. Studies and applications (apps) based on FTAs have included: (1) automatic transfer of blood glucose (BG) data; (2) short message service (SMS)-based education for type 1diabetes (T1DM); (3) a diabetes diary for type 2 diabetes (T2DM); (4) integrating a patient diabetes diary with health care (HC) providers; (5) a diabetes diary for T1DM; (6) a food picture diary for T1DM; (7) physical activity monitoring for T2DM; (8) nutrition information for T2DM; (9) context sensitivity in mobile self-help tools; and (10) modeling of BG using mobile phones. We have analyzed the performance of these 10 FTA-based apps to identify lessons for designing the most effective mHealth apps. From each of the 10 apps of FTA, respectively, we conclude: (1) automatic BG data transfer is easy to use and provides reassurance; (2) SMS-based education facilitates parent-child communication in T1DM; (3) the T2DM mobile phone diary encourages reflection; (4) the mobile phone diary enhances discussion between patients and HC professionals; (5) the T1DM mobile phone diary is useful and motivational; (6) the T1DM mobile phone picture diary is useful in identifying treatment obstacles; (7) the step counter with automatic data transfer promotes motivation and increases physical activity in T2DM; (8) food information on a phone for T2DM should not be at a detailed level; (9) context sensitivity has good prospects and is possible to implement on today's phones; and (10) BG modeling on mobile phones is promising for motivated T1DM users. We expect that the following elements will be important in future FTA designs: (A) automatic data transfer when possible; (B) motivational and visual user interfaces; (C) apps with considerable health benefits in relation to the effort required; (D) dynamic usage, e.g., both personal and together with HC personnel, long-/short-term perspective; and (E) inclusion of context sensitivity in apps. We conclude that mHealth apps will empower patients to take a more active role in managing their own health.
| S-EPMC3570855 | biostudies-other
Project description:BACKGROUND:Providing financial incentives has gained popularity as a strategy to promote weight loss, but questions remain about how best to utilize them. A promising mobile health strategy provides users with near-real-time financial incentives based on both the process of weight loss (behavioral modification) and actual weight loss. To maximize the impact of this strategy, a methodology is needed to close the gap between the desired behavior and the financial incentive. Leveraging mobile health tools-such as mobile phone apps, cellular body weight scales that transmit data to physicians and researchers, and text messaging for instructions and encouragement-has the potential to close this gap. OBJECTIVE:This study aimed to describe the development of an innovative technology-based solution and lessons learned from a feasibility trial-Log2Lose-that encouraged individuals to lose weight by providing near-real-time financial incentives for weight loss and/or dietary self-monitoring. METHODS:We recruited participants (N=96) with a body mass index greater than or equal to 30 kg/m2 for a 24-week weight loss trial. Participants received a behavioral intervention of biweekly, in-person group sessions and were instructed to log a minimum number of daily calories in MyFitnessPal and to step on the BodyTrace cellular scale at least twice per week. In a 2×2 design, participants were randomized into 4 groups to receive financial incentives for the following: (group 1) weekly weight loss and dietary self-monitoring, (group 2) dietary self-monitoring only, (group 3) weekly weight loss only, or (group 4) no financial incentives. Diet and weight data from the devices were obtained through application programming interfaces. Each week, we applied algorithms to participants' data to determine whether they qualified for a monetary incentive (groups 1-3). A text message notified these participants of whether they met weight loss and/or self-monitoring requirements to earn an incentive and the amount they earned or would have earned. The money was uploaded to a debit card. RESULTS:Our custom-engineered software platform analyzed data from multiple sources, collated and processed the data to send appropriate text messages automatically, and informed study staff of the appropriate incentives. We present lessons learned from the development of the software system and challenges encountered with technology, data transmission, and participants (eg, lost connections or delayed communication). CONCLUSIONS:With consistent and constant validation checks and a robust beta test run, the process of analyzing data and determining eligibility for weekly incentives can be mostly automated. We were able to accomplish this project within an academic health system, which required significant security and privacy safeguards. Our success demonstrates how this methodology of automated feedback loops can provide health interventions via mobile technology. TRIAL REGISTRATION:ClinicalTrials.gov NCT02691260; https://clinicaltrials.gov/ct2/show/NCT02691260.
| S-EPMC6391641 | biostudies-literature
Project description:BackgroundMobile phones offer new opportunities to efficiently and interactively collect real-time data from patients with acute illnesses, such as urinary tract infections (UTIs). One of the main benefits of using mobile data collection methods is automated data upload, which can reduce the chance of data loss, an issue when using other data collection methods such as paper-based surveys.ObjectiveThe aim was to explore differences in collecting data from patients with UTI using text messaging, a mobile phone app (UTI diary), and an online survey. This paper provides lessons learned from integrating mobile data collection into a randomized controlled trial.MethodsParticipants included UTI patients consulting in general practices that were participating in the Supporting the Improvement and Management of UTI (SIMPle) study. SIMPle was designed to improve prescribing antimicrobial therapies for UTI in the community. Patients were invited to reply to questions regarding their UTI either via a prospective text message survey, a mobile phone app (UTI diary), or a retrospective online survey. Data were collected from 329 patients who opted in to the text message survey, 71 UTI patients through the mobile phone UTI symptom diary app, and 91 online survey participants.ResultsThe age profile of UTI diary app users was younger than that of the text message and online survey users. The largest dropout for both the text message survey respondents and UTI diary app users was after the initial opt-in message; once the participants completed question 1 of the text message survey or day 2 in the UTI diary app, they were more likely to respond to the remaining questions/days.ConclusionsThis feasibility study highlights the potential of using mobile data collection methods to capture patient data. As well as improving the efficiency of data collection, these novel approaches highlight the advantage of collecting data in real time across multiple time points. There was little variation in the number of patients responding between text message survey, UTI diary, and online survey, but more patients participated in the text message survey than the UTI diary app. The choice between designing a text message survey or UTI diary app will depend on the age profile of patients and the type of information the researchers' desire.Trial registrationClinicalTrials.gov NCT01913860; https://clinicaltrials.gov/ct2/show/NCT01913860 (Archived by WebCite at http://www.webcitation.org/6pfgCztgT).
| S-EPMC5424123 | biostudies-literature
Project description:The ability to perceive and avoid harmful substances or stimuli is key to an organism's survival. The neuronal cognate of the perception of pain is known as nociception, and the reflexive motion to avoid pain is termed the nocifensive response. As the nocifensive response is an ancient and evolutionarily conserved behavioral response to nociceptive stimuli, it is amenable to study in relatively simple and genetically tractable model systems such as Drosophila. Recent studies have taken advantage of the useful properties of Drosophila larvae to begin elucidating the neuronal connectivity and molecular machinery underlying the nocifensive response. However, these studies have primarily utilized the third-instar larval stage, and many mutations that potentially influence nociception survive only until earlier larval stages. Here we characterize the nocifensive responses of Drosophila throughout larval development and find dramatic changes in the nature of the behavior. Notably, we find that prior to the third instar, larvae are unable to perform the characteristic "corkscrew-like roll" behavior. Also, we identify an avoidance behavior consistent with a nocifensive response that is present immediately after larval hatching, representing a paradigm that may be useful in examining mutations with an early lethal phenotype.
| S-EPMC4209481 | biostudies-literature
Project description:Current genetic studies of monogenic and complex bone diseases have broadened our understanding of disease pathophysiology, highlighting the need for medical interventions and treatments tailored to the characteristics of patients. As genomic research progresses, novel insights into the molecular mechanisms are starting to provide support to clinical decision-making; now offering ample opportunities for disease screening, diagnosis, prognosis and treatment. Drug targets holding mechanisms with genetic support are more likely to be successful. Therefore, implementing genetic information to the drug development process and a molecular redefinition of skeletal disease can help overcoming current shortcomings in pharmaceutical research, including failed attempts and appalling costs. This review summarizes the achievements of genetic studies in the bone field and their application to clinical care, illustrating the imminent advent of the genomic medicine era.
| S-EPMC7581702 | biostudies-literature
Project description:ObjectivesRates of preventive asthma care after an asthma emergency department (ED) visit are low among inner-city children. The objective of this study was to test the efficacy of a clinician and caregiver feedback intervention (INT) on improving preventive asthma care following an asthma ED visit compared to an attention control group (CON).MethodsChildren with persistent asthma and recent asthma ED visits (N = 300) were enrolled and randomized into a feedback intervention or an attention control group and followed for 12 months. All children received nurse visits. Data were obtained from interviews, child salivary cotinine levels and pharmacy records. Standard t-test, chi-square and multiple logistic regression tests were used to test for differences between the groups for reporting greater than or equal to two primary care provider (PCP) preventive care visits for asthma over 12 months.ResultsChildren were primarily male, young (3-5 years), African American and Medicaid insured. Mean ED visits over 12 months was high (2.29 visits). No difference by group was noted for attending two or more PCP visits/12 months or having an asthma action plan (AAP). Children having an AAP at baseline were almost twice as likely to attend two or more PCP visits over 12 months while controlling for asthma control, group status, child age and number of asthma ED visits.ConclusionsA clinician and caregiver feedback intervention was unsuccessful in increasing asthma preventive care compared to an attention control group. Further research is needed to develop interventions to effectively prevent morbidity in high risk inner-city children with frequent ED utilization.
| S-EPMC4428172 | biostudies-literature