People with neurological and physical disabilities (PWD) experience a myriad of secondary and chronic health conditions, thus, reducing their participation and quality of life. A telehealth exercise program could provide a convenient opportunity for improving health in this population. To describe participants' perceived benefits of a telehealth physical activity program among PWD, we conducted semi-structured interviews with 30 study participants after completing the 24-week program SUPER-HEALTH . Interview data were recorded, transcribed verbatim, and analyzed using inductive thematic analysis. The mean age of the sample was 51 ± 13 years, the primary disability was Multiple Sclerosis, and there were nine men (30%) and 21 (70%) women. Inductive thematic analysis resulted in four themes that include the following: (1) improved health and function, (2) increased activity participation, (3) improved psychosocial health, and (4) optimized performance and benefits. These preliminary findings provided support for the use of a home exercise program and recommendations to improve it to enhance benefits among PWD. People with disabilities (PWD) are highly susceptible to secondary health conditions, including osteoporosis, osteoarthritis, decreased balance, strength, endurance, fitness, flexibility, increased spasticity, weight problems, and depression –4. TheseThe health needs of PWD are extensive and drive the need for health promotion strategies and catered rehabilitative care in and outside of medical institutions . While sTo address these barriers, researchers in rehabilitation sciences and health education have adapted health interventions to allow for online delivery and two-way audio-visual communication, also known as telehealth . Studiesvia a mobile application . This program was delivered lication  to proviThis study used a qualitative research design involving semi-structured interviews with purposefully selected individuals among a cohort of PWD who completed an RCT of physical activity. This study was approved by the institutional review board at the university, and participants provided verbal consent before participation.The M2M is set to music to provide greater enjoyment from an exercise routine and includes aerobic and strength training . The strSUPER-HEALTH includes a 12-week adoption phase, a 12-week transition phase, and a follow-up completed at 48 weeks. The intervention includes a prescription of 48 min of exercise video content on the first week, and this amount increases each week, with 150 min delivered at week 24. Each participant received a Fitbit and a tablet with a study app. Research staff monitored participants' Fitbit and tablet activity each week and provided a coaching support call for participants with no activity. More details of the study are reported elsewhere .Eligibility criteria for SUPER-HEALTH included: (a) self-report of a physical disability or mobility impairment, (b) 18 to 74 years of age, (c) not enrolled in a structured exercise program over the past 6 months, (d) can use upper, lower, or both sets of extremities to exercise, € can converse and read English, (f) medically stable to perform the home exercise as determined by their physician, and (g) wireless internet in the home. For the current study exploring program experiences, SUPER-HEALTH participants were selected for an interview after completing 24 weeks using a purposeful sampling strategy to promote diversity among interviewed participants. Participants were selected based on the following characteristics: functional level during exercise , gender, and race. The research team recorded this information before each interview to ensure that the sampling strategy was executed. This project aimed to recruit a convenience sample of 30 participants who had completed at least 24 weeks (primary endpoint) of the SUPER-HEALTH study.Participants who agreed to be interviewed were scheduled, and all interviews were completed over the phone. The interviews were semi-structured, with a max duration of 30 min. Interview questions focused on understanding participants' perceived benefits of the program regarding their physical and functional health, mental health, social health, and any other perceived benefits. Questions also included participant suggestions for enhancing perceived benefits in future telehealth exercise programs. Sample questions are displayed in Box 1• Please tell me about your experience with the SUPER-HEALTH program.• What benefits have you seen when exercising with the program?• How do you feel when you exercise with the program?• Describe to me some positive experiences of the program.• What did you enjoy most about this program?• Describe to me some negative experiences or issues you experienced with the program.• What did you least like about this program?• What did you find useful about this program? Why?• What did you not find useful about this program? Why?• How do you think this program helps you exercise more?• What suggestions do you for improving the program?For this study, the research team included six PhD-level academic researchers with two experts in qualitative research methods (NI and IH) and four researchers with a background in rehabilitation science . One researcher (JW) has a disability and completed the interviews as part of a KL2 Mentored Career Development award. Another researcher (JR) was the mentor for the award and principal investigator of the exercise trial, from which the participants were interviewed.Demographics and disability characteristics were reported to describe the sample. Coding and analysis were guided by the Braun and Clarke 6-step thematic analysis (inductive) approach . First, n = 21/30, 70%) and Caucasians . Disabilities included eight with multiple sclerosis (26.7%), three Parkinson's Disease (10%), three spinal cord injury (10%), three spina bifida (10%), three stroke (10%), and six with spinal disorders (20%), such as scoliosis. Lastly, participants were selected based on a functional level for exercise routines, including 16 who were able to exercise standing, 12 sitting, and two with only one side of their body . All the contacted participants agreed to complete the interview. The mean age of the sample was 51 ± 13 years. The overall samples predominantly consisted of women . The program was also perceived to help reduce weight and increase balance and coordination, such as turning the head around safely while walking or driving.The first theme highlighted Participants stated that they increased the volume of physical activity they performed after joining the program. Contributors to this increase in activity were participation in the exercise prescription and additional activities that they performed outside of the program . Participants stated that SUPER-HEALTH provided the needed knowledge of how to perform physical activity as a person with a disability and a reminder and encouragement to be physically active. Several participants noted how SUPER-HEALTH helped them to adopt a more active lifestyle.psychosocial aspects of health. The benefits included mood enhancement, better sleep quality, and increases in self-efficacy. Participants often reported that they felt happier, energized, and mentally sharp after the exercise, which helped them continue the exercise and more activities throughout the day. They also noted enhanced confidence in their physical ability when accomplishing the prescribed exercise sessions and realizing their physical strength and ability with new movements.The third theme highlighted that the program helped their To optimize their performance and benefits, participants reported that the program could be better tailored to their abilities and interests. While many participants commented that the exercises were appropriate for their ability throughout the intervention period, some participants perceived that the program content was not appropriate for their functional ability/level . Participants described challenges in some exercise routines that the movements were too fast and hard to follow, which created feelings of frustration. In contrast, some participants reported that too easy/slow exercises were not perceived as “exercise” and created feelings of boredom and decreased motivation to participate.design an individualized program. Some included having the sequence of videos rearranged to increase the motivation and interest . They also suggested emphasizing exercise components meeting their specific needs and health concerns .Some participants stated a desire for the ability to via calls or Zoom meetings. They described that potential follow-up during the intervention can answer frequent questions for exercise programs , which could enhance the benefits received from the exercise sessions.Some participants desired occasional human connection/support from research staff  This paper presented participants' perspectives for a randomized controlled trial aimed to investigate the effectiveness of a convenient telehealth exercise program for adults with neurological and physical disabilities. Currently, there are minimal exercise guidelines for PWD, and much more research is needed to develop effective interventions for increasing the benefits of exercise in this population , 21. PreSuggestions for future telehealth exercise programs involved the precise tailoring of program support and program content. For program content, this can be completed in a couple of ways, such as delivering exercise routines through live, synchronous sessions, where participants schedule a time with the exercise instructor each week to complete sessions using video-conferencing and real-time monitoring technology. Another option is to allow users to create a ‘user design workout routine', where participants can choose exercise videos and build their routines. This would allow participants to create a program that emphasizes their personal health needs, such as more flexibility, strength, or cardiovascular health. This would also allow participants to target specific health issues they encounter based on disability etiology  using exercise guidelines targeting a specific disabling condition, if available , 25. ProSUPER-HEALTH was a large study of its kind, which used telehealth technology to encourage sustainable home exercise among underserved and disabled adult populations. The preliminary results of the trial show the effectiveness of this home exercise program, emphasizing the growing need for these convenient physical activity interventions. The exercise program, M2M, does this by making the exercise fun (with music and routines), and subjective to each participant's functional level by tailoring certain exercises and exercise intensities to them. The M2M program is provided in the form of music, which bolsters enjoyment and, therefore, participation, increases future scalability because it is seen as “fun” and can still be modified to be novel . The constant monitoring technology used in this trial allows researchers to gauge when participants are not fully engaged in their exercise programs and prompts for more tailored coaching and adjustments. Importantly, participants stated no issues with utilizing the mobile health application or video delivery. Although this is a small sample of participants from the study, this should provide clinical providers an assurance that the usability of current technology for delivering exercise programs has minimal barriers for patients.The purpose of the study was to collect qualitative data on participants' perceived benefits of the SUPER-HEALTH program. The study had several limitations. This study was conducted in one region of the United States and the findings may not be generalizable to other regions across the country or in other countries. This was a retrospective evaluation and some of the participants were interviewed at 24 weeks, while others were interviewed further out including up to 6 months from the 24-week endpoint. A purposeful sampling strategy was used to obtain diversity in interviews, which could introduce bias. Lastly, the sample was composed primarily of women (70%) and the findings may not be as representative of males.SUPER-HEALTH connected participants to health professionals in the convenience of their home providing accessible exercise routines. Transportation and program costs are two of the most common barriers reported among those with physical disabilities and this program eradicates that issue. Telehealth in this specific study also confluences with current technologies in activity monitoring (FitBit), which allows the participant to receive a more accurate activity monitoring. Future programs should include tailoring of support and program content, such as exercises, coaching support, and program progression.The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving human participants were reviewed and approved by UAB Office of Institutional Review Board. The patients/participants provided their written informed consent to participate in this study.JW, NI, and IH developed interview guides. JW was responsible for conducting the interviews. JW and YK analyzed the data. JW, YK, TS, and BL created the initial draft of the manuscript. All authors contributed to the final manuscript draft.Funding for this study was provided by the National Institutes of Health, Eunice Kennedy Shriver National Institute of Child Health and Human Development (5R01HD085186) and a Mentored Career Development Award from the National Center Advancing Translational Research (KL2 TR 003097).The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Applying to emergency medicine (EM) residency programs as a medical student is challenging and complicated in a normal year, but the 2020/2021 application cycle was further complicated by the COVID-19 pandemic. Due to the decrease of in-person opportunities for students to connect with residency programs, virtual “town-hall” meetings were developed. In this study our primary objective was to determine whether attendance at a virtual residency program information session improved the perceived knowledge of curriculum information and program exposure to medical students applying to an EM residency.Four study sites hosted a total of 12 virtual events consisting of residents, faculty, or both. Standardized pre-event/post-event surveys were conducted to capture medical student perceptions before/after each of the virtual sessions. Apart from measuring the improvement in students’ perceived knowledge of a program by gauging their responses to each question, we used a 10-question composite score to compare pre- vs post-event improvement among the participants.The pre-event survey was completed by 195 attendees, and the post-event survey was completed by 123 attendees. The median and mean composite score to this 10-question survey improved from 32.19 to 45, and 31.45 to 44.2, respectively, in the pre- to post-event survey.This study showed improvement of medical students’ perceived knowledge of residency programs (reflected as increased agreement from pre- to post-event survey). The data demonstrates through question responses that students not only obtained information about the programs but also were able to gain exposure to the culture and “feel” of a program. In a non-traditional application season in which students are unable to pursue their interest in a program through audition rotations, virtual town hall events, along with other asynchronous events, may be a reasonable approach to increasing medical student understanding and awareness of a program and its culture. Applying to residency is a challenging annual endeavor for medical students who are forced to make decisions about where they would like to train when they may have a limited amount of information about programs. They rely on residency websites, social media, personal communication, online forums, and in emergency medicine (EM) in particular, audition rotations and in-person visits.During the 2020–2021 application cycle, amidst the coronavirus 2019 (COVID-19) global pandemic, most of the opportunities that previously took place in person were not feasible. There was significant concern that many third-year medical students would not be able to gain clinical and program-specific experience before submitting their residency applications.One novel method emerged for students and residents to share information through virtual “meet and greet” events, sometimes referred to as “town hall events,” “get to know us sessions,” or “virtual tours.” These virtual events, hosted by the residency program, became a popular way to connect programs and students. The basic format was a series of sessions, or a single video session, hosted and promoted by a specific residency program, led by either current residents, faculty, or both. A brief presentation or introduction was typically provided, followed by a space for students to ask questions and glean information about specific program details. Some programs offered multiple sessions, each highlighting specific strengths.Population Health Research CapsuleWhat do we already know about this issue?Residencies use virtual “meet and greet” events to connect programs and students, but the effectiveness of these events has not been studied.What was the research question?Do virtual information sessions improve medical student knowledge of curriculum offerings and provide enough program exposure?What was the major finding of the study?Attendance at virtual information sessions improves the perceived knowledge of curriculum and enhances program exposure.How does this improve population health?Residency programs should consider incorporating these types of events to enhance medical student recruitment and convey important program information.After performing a brief search through social media outlets, program websites, and virtual newsletters from EM professional organizations, we found that as of August 2020 at least 99 of 273 EM residency programs publicized or participated in a virtual event. This number significantly increased by the end of the 2020–2021 application cycle with 224 EM residency programs participating in a virtual event as of March 2021. These events ranged from Instagram or Facebook live events to Zoom gatherings and panels. Prior to this application cycle, such events were uncommon and did not appear to be a standard way of disseminating information to the residency applicant pool. Thus, there was no published research to date on the effectiveness of a live virtual recruitment event in providing useful information to EM applicants attempting to make residency selection decisions. With many EM residency programs transitioning to these virtual events for recruitment purposes, we believed it would be important to determine whether a virtual format is an effective method of improving applicant understanding of curriculum information and enhancing program exposure.In this study our primary objective was to evaluate the usefulness of this kind of event at four different residencies within the US using pre- and post-event surveys. Specifically, does attendance at a virtual residency program information session improve the perceived knowledge of curriculum information and program exposure to medical students applying to an EM residency? We hypothesized that participation would allow for increased self-reported knowledge of various specific program details and increase the interest of the applicants in the program.This was a multicenter pre- and post-intervention survey of medical students attending a virtual residency information session at one of the four study sites. Site one is a three-year county hospital-based EM program with 45 residents in Arizona, which hosted one session. Site two is a community-based four-year EM program in Oklahoma with 30 residents, which hosted two sessions. Site three is a three-year county hospital-based EM program with 45 residents in Texas that hosted eight sessions. Finally, site four is a three-year community rural ED with 36 residents in New Jersey that hosted one session.Each site was responsible for promoting its own event including advertising, date selection, time, virtual software platform used, and number of dates to offer their meetings. A standardized pre- and post-event survey was used by all four sites with voluntary participation by the students who attended each event. We provided each program with a survey template using Google Forms , which each program could then individually brand without changing the content of the survey. Students were recruited before and after the session to fill out the survey information.As the use of virtual information sessions is a relatively novel practice, there are no previously validated surveys on this topic. Students were instructed to indicate their agreement using a Likert scale with specific statements before and after the sessions. Questions were developed, reviewed, piloted, and refined by the research team and adapted from previously published literature indicating some of the top reasons medical students select a residency program.Summary of all the respondents and questions were described along with comparison of pre-post matched responses linked using the last five digits of the respondents’ phone numbers. For each question, the highest level of agreement was assigned a score of 5 with the lowest level of agreement assigned as 1. We used the Wilcoxon signed-rank test to compare the score for each question by students who responded to both pre- and post-surveys. Responses were further dichotomized into “agree or strongly agree” vs all other responses; we used McNemar two-sided tests to evaluate changes in agreement pre- and post-surveys. For 10 questions, perfect favorable agreement would make a total agreement score of 50, which was used as a composite score to evaluate overall pre-post change in level of agreement. We used the Wilcoxon signed-rank test to compare differences in composite scores pre- and post-survey.Overall, the pre-survey was completed by 195 attendees, and the post-event survey was completed by 123 attendees. Response proportions for pre-surveys ranged from 40.23% to 59.02% of total attendance across four locations, which were slightly higher than 21.88–49.18% for the post-event surveys . Survey P-values were < 0.001 for all 10 questions.We further analyzed these 75 participant responses to determine efficacy of the goals of the information sessions. The ways in which residency programs and potential applicants interact will continue to change as the COVID-19 pandemic fluctuates and resolves. In this study we were able to show improvement toward agreement from pre- to post-event surveys after virtual recruitment events. The data clearly demonstrates through the students’ responses to questions that they not only obtained information about the program , but also information regarding the culture and “feel” of a program, which can sometimes be challenging to convey. Additionally, the results demonstrate that students were not only provided with tools for contacting program members, but that they were comfortable doing so after attending one of these sessions. As this study was designed to identify the perceived benefit of a virtual information session, further research opportunities include directly assessing applicant knowledge of residency-specific details.As new techniques and ideas are developed to navigate a new virtual normal, it is important to ensure that students can make appropriate decisions about where they would like to match for residency. Many of these virtual sessions were developed to address the 2020–2021 travel and visiting restrictions. However, this type of event will likely be beneficial in the future as well. These virtual gatherings can continue to be used as a tool by programs to help showcase their culture, community, and strengths. They can also provide an opportunity for students who are unable to physically visit programs gain more information about a residency program.We identified various limitations throughout this research experience. The most significant limitation was the low response rate for the surveys. As the design included a pre- and post-event survey with no requirements for completion, there was a large discrepancy between the number of students who registered, completed the pre-event survey, and attended the event, and the number of students who completed the post-event survey. There were fewer participants for the post-surveys relative to the pre-surveys across each of the four locations resulting in fewer matchable pairs available for the pre-post response comparisons. Unfortunately, data was missing or incomplete due to the survey nature, and not all pre- and post-event survey responses could be matched, resulting in some incomplete data. As a result, we are only able to report results from students willing to complete both surveys. Due to the small data sample size, many of the numerical results may be impacted, and there is a potential for variation in the results. However, our limited data on the responses to questions indicated a dramatic improvement in perceived knowledge, with many areas showing considerable advancement in perceived knowledge of the program. While the individual percentage of improvement could change with a larger sample size, it is unlikely that the overall benefit of virtual information sessions for interested medical students would be rejected.During the design of the protocol, we determined that comfort of the participants was paramount, as we did not want there to be undue pressure for a student to complete the survey or to feel that there would be a professional consequence associated with participation. Students received one email before the session and one after recruiting them to participate in the survey with no other correspondence, which likely hindered our response rate. Future studies and follow-up questionnaires regarding this topic may improve response rates by sending additional follow-up correspondence. One option would be to use a staff member not associated with the residency to send additional emails and collect responses to maintain objectivity, resulting in another layer of protection for students completing the questionnaire.Additionally, there was no standardized structure on what was to be included at each of the study site information sessions. Each location was free to promote, advertise, and host its own session or multiple sessions without specific oversight or specific requirements. This was intentionally done to allow for the creativity, personality, and innovation of each program to shine through without external modification. While we emphasized both in writing and verbally our goal of anonymity, some students may have felt pressured to respond to the surveys in a positive nature as they were likely applying for a residency position with the program. Furthermore, as students were self-selecting which information sessions to attend, there is a potential for a positive selection bias. Finally, as these programs were recruiting in the same application cycle, there may have been attendance overlap by medical students participating in the individual surveys. Future studies on this topic may benefit from including sites from different geographic locations and with a wider range of program sizes to further strengthen results.Additionally, our study questions were targeted for short-term follow-up and did not prove increased familiarity long-term or necessarily affect the program’s recruitment of candidates. Additional studies including how attendance at a virtual information session may affect a student’s rank list or match results would be areas of future investigation to further examine the benefit of virtual sessions.It is important for medical students and EM residency programs to be able to critically evaluate each other to allow for the best possible match. Hosting virtual meet-and-greet events can be an effective way for programs to attempt to facilitate this type of information exchange when in-person interaction is limited. Attendance at a virtual residency program information session appears to improve the perceived knowledge of curriculum information and program exposure to medical students applying to an EM residency. Residency programs should consider incorporating these types of events to enhance medical student recruitment and convey important program information.


Older adults with cognitive decline need physical activity for maintaining brain health and mitigating cognitive decline. Tai Chi is a safe and gentle aerobic exercise and has been recommended for people with various health conditions to improve their physical functioning, well-being, and quality of life (QoL). This study aimed to determine the feasibility of a 12-week program of Tai Chi for memory (TCM) among older adults with mild cognitive impairment (MCI) or dementia; and to determine the pilot effects of TCM on physical functioning, depression, and health-related QoL.t-tests were used to compare the effects of TCM within and between groups.A quasi-experimental design was used with two groups: MCI and dementia. The feasibility of the 12-week TCM program was assessed after it finished in terms of its acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited-efficacy testing. Other health-related outcomes, physical functioning, depression, and health-related QoL were measured before and after the TCM program. Outcome measures consist of a digital hand dynamometer for grip strength, the standard sit-and-reach test, the one-leg-standing balance test, timed up and go (TUG) test, the Korean version of the Geriatric Depression Scale, and the 12-item Short Form survey (SF-12). Paired and independent n = 21) or dementia (n = 20), and its accepted feasibility was assessed. After TCM, the MCI group exhibited significant enhancements in right-hand grip strength  and physical-health-related QoL . TUG scores improved in both groups . The adopted form of the TCM program was effectively and safely applied to those with various levels of cognitive impairment. The program was well accepted by the participants with a mean attendance rate of 87%. No adverse events were reported during the program.The TCM program was completed by 41 participants with MCI  at ClinicalTrials.gov. Globally, 6.6% of people aged 60 years and older have mental and neurological disorders including Alzheimer’s disease (AD) and dementia . More thPharmacological and nonpharmacological treatments are used to maintain and reduce cognitive decline. Specifically, nonpharmacological interventions are preferred for patients with mild cognitive impairment (MCI), which is a stage of predementia . Among nTai Chi is a safe and gentle aerobic exercise that addresses the mind, body, and spirit. This traditional mind-body exercise is relatively nonstrenuous, low impact, and includes relaxation, meditation, and deep and regulated breathing techniques, and slow graceful movements . As a tyTo identify the feasibility of TCM for older adults with MCI or dementia for 12 weeks, including in terms of its acceptability, demand, implementation, practicality, adaptation, integration, expansion, and study limitation.To compare the effects of TCM on physical functioning , depression, and health-related QoL among older adults with MCI and dementia.In this study, we used the Tai Chi for memory (TCM) program. TCM was developed for people with cognitive impairment  while coThis quasi-experimental pretest-posttest study without a control group examined the feasibility of 12-week TCM for two groups of older adults with cognitive impairment, and compared the effects of TCM on physical functioning, depression, and the health-related QoL within and between the MCI and dementia groups.n = 25) or dementia (n = 25) to form the intervention groups  community-residing adults aged 75 years or older, (2) registered at the public dementia prevention centers for dementia screening by health professionals with the diagnosis of either MCI or dementia, (3) Korean version of the Montreal Cognitive Assessment (MoCA-K) score of 22 or lower, (4) had not participated in any formal regular exercise program during the previous 6 months, and (5) agreed to participate in the Tai Chi program twice a week for 12 weeks. Those with musculoskeletal disorders, other neurological/psychiatric diseases other than dementia, or chronic conditions that would prevent them from participating in regular exercise were excluded. The recruitment period was from July 2018 to March 2019. According to Julious, it is recommended that a minimum of 12 subjects per group be considered for pilot studies in terms of feasibility and precision . Conside communitTCM is a standardized type of Tai Chi for health developed by Dr. Lam specifically for those who experience or want to prevent cognitive problems . As a grAn experienced Tai Chi instructor led the program, while the research staff monitored for any adverse effects or fall risks during the sessions. The feasibility of the program was assessed in terms of acceptability, demand, implementation, practicality, adaptation, integration, expansion, and efficacy study limitation .Outcome measurements were performed at the baseline and the posttest after the 12-week TCM program by a trained research team. A structured questionnaire comprised a face-to-face interview to measure depression and QoL as well as sociodemographic information. Physical functioning was assessed by another research team who did not know the group of participants.Grip strength was assessed in both hands using a digital hand dynamometer . The higher score of two repeated measurements was recorded for each hand.The standard sit-and-reach test (SSRT)  was usedBalance was assessed using a one-leg-standing balance test (OLST) . The eyeMobility was assessed by the Timed Up and Go test (TUG), which measured the time that it took for the participants to stand up from a chair, walk to a line on the floor 3 m away, turn around, and walk back to the chair and sit down at a normal pace . Lower sDepression was assessed by the short form of the Korean version of the Geriatric Depression Scale (SGDS-K) . SGDS-K QoL was measured using the SF-12 , which cData collection took place in three centers simultaneously. Individual interviews were conducted to assess sociodemographic information, depression, and health-related QoL. The trained research staff measured grip strength, balance, flexibility, and mobility according to the standard protocol.t-tests, and an independent t-test was used to compare differences in mean scores between the two groups. All outcome variables were analyzed at the 0.05 alpha level. The statistical assumption of normality for continuous variables was assessed by skewness or kurtosis above an absolute value of 2.0, and a bootstrap with 1000 samples was used for the analysis considering the small sample size.Descriptive statistics were used to analyze the sociodemographic characteristics and outcome variables of both groups using SPSS 25.0. The effects of the Tai Chi program on physical functioning, depression, and QoL were compared within groups using paired This study was approved by the Institutional Review Board of the Chungnam National University Hospital (CNUH 2018–07-070) where the primary researcher was affiliated. The dementia prevention centers were contacted to obtain permission. The research staff obtained the written consent form from each participant after explaining the purpose of the study, its protocol, the confidentiality of the data, safety information regarding benefits and risks, and the possibility of withdrawing at any time without any consequences.TCM was well accepted by the participants. At the end of the program, the participants expressed that they enjoyed coming to the class and felt that they belonged to the group while practicing together.The participants completed TCM with an average attendance rate of 87% (ranging from 40 to 100), with absentees mostly citing family circumstances. There were no adverse events reported by the participants during the program.A standardized TCM protocol was implemented. The protocol included greetings, a warm-up to enhance Qi and balance, main movements from sitting to standing in a block system, followed by cool-down with gentle stretching, and Dan Tian breathing. The order of the protocol was implemented consistently during each session, while the duration of practicing main movements from sitting to standing varied to assess the progress of the participants in each group.Progress in learning the main Tai Chi movements in blocks was slower for those with dementia than for those with MCI, but all participants in both groups were able to follow the protocol until the end of the study period. The participants were allowed to be excused from the class when they felt tired or distracted, and individual chairs were provided.The physical and cognitive functioning of the participants was considered when implementing the TCM program. Strategies that adapted Tai Chi to this population were implemented in the TCM program. First, the movements of TCM were selected based on the features of being simple and safe to perform as well as effective for implementing Tai Chi principles into the movements. Second, each session was provided based on the protocol including three or more repetitions of blocked TCM movement sets accompanied by meditation music, so that the structure of sessions was consistent throughout the study period, making the participants feel comfortable in following it. Third, the Dan Tian breathing exercise was a good way to allow the participants to rest in chairs while practicing movements that matched breathing patterns. Fourth, one of the most important features of TCM in improving the balance and mobility of this population is the Tai Chi walking exercise. This could be performed while sitting to learn the principles without weight transfer, then moving to a standing position to practice walking with weight transfer from empty to full steps.TCM is a mind-body exercise that combines the features of aerobic exercise  with Tai Chi principles . The intensity and implementation of the TCM program were also adapted to adhere to the limited physical and cognitive functioning of older adults.We applied the TCM program to a population with various cognitive and physical abilities. This program was effectively and safely applied to this population with no adverse events reported, which indicated its potential of being expanded to others with similar functional limitations.A clinical efficacy of TCM was evaluated. The findings indicated potential effects on physical functioning and QoL among this population, but there was no comparison group to control for confounding factors, and consequently, the statistical power was relatively low. Further studies are warranted with a stronger design that includes longer follow-up periods.n = 21) or dementia (n = 20) had a mean age of 79 years and were mostly female (90–95%), had no education experience (52–55%), widowed (61–85%), and had a low economic status (90–95%). Most of them were able to perform independent daily activities, but 9–20% of them required some assistance. Most participants had multiple chronic conditions, including arthritis, hypertension, or diabetes. The mean scores for cognitive functioning assessed using the MoCA-K were 17.05 and 9.20 in the MCI and dementia groups, respectively  and enhanced mobility  after 12 weeks of TCM. The dementia group had significantly increased mobility  after 12 weeks of TCM . The MCS in both groups showed a tendency to improve after the intervention, but the improvement was not significant  and mental components of health-related QoL (MCS) were calculated using the weighted means for the eight domains. The baseline PCS and MCS did not differ significantly between the groups. The PCS in the MCI group increased significantly after the intervention  [p = .910) among elderly females with dementia after the 12-week Tai Chi program  [Muscle strength in both hands mostly increased after the 12-week TCM program in both groups. However, there were no significant differences within the groups except for the right hand in the MCI group. This result was consistent with Kim et al. finding no effect on grip strength among adults with Parkinson’s disease and MCI  = .337) . Another . Anothees/week) , 38. Howes/week) .p = .001 and p = .020 respectively). This result was consistent with those of a previous study by Choi et al. on fall prevention in older adults [p = .01). A meta-analysis by Liu et al. [p < .05). On the other hand, some studies involving the elderly with dementia have found no differences in mobility after 20-week Tai Chi consisting of weekly classes and home practice [Mobility measured using TUG was significantly improved in both the MCI and dementia groups  and balance (p = .139) after the 12-week Tai Chi program among adults with Parkinson’s disease and MCI [F = 0.30) after an 8-week Tai Chi program in elderly individuals with dementia [p < .05) after older adults with MCI [p < .001) was found after a 12-week Tai Chi program among elderly females with dementia [Increases and decreases in flexibility measured using SSRT and in balance measured using the OLS varied, and the differences were not significant in both groups. These results are similar to those of other studies that applied Tai Chi. Kim et al. found that there were no differences in flexibility . This was similar to Siu and Lee’s finding that older adults with MCI had improved PCS (p = .036) and MCS (p = .014) after a 16-week Tai Chi program [p = .465) among older adults with MCI [QoL was measured using the SF-12 and calculated as PCS and MCS. QoL in the MCI group improved after the 12-week TCM, and PCS improved significantly  with or without assistance. Since most participants (90% for MCI group and 80% for dementia group) were independent in performing ADL, the applicability of the TCM is not confirmed with those who require assistance in most ADL, hence leading to the limited generalizability of the program feasibility. In terms of the design, there was no control group in this study to verify the pilot efficacy of TCM, and each group has a relatively small sample size. This could have made it difficult to detect the effects of the 12-week TCM program on physical functioning, depression, and QoL. Future studies with larger samples and stronger designs with control groups are needed to confirm the effects of TCM.The feasibility of TCM was considered feasible for older adults with MCI or dementia. TCM also had significant and positive effects on mobility and health-related QoL. We therefore believe that TCM has the potential to improve physical functioning and QoL. Health-care providers working in MCI and dementia populations can apply TCM to their patients to enhance their physical functioning and QoL. To verify the effects of TCM on cognitive functioning, depression, and well-being, health-care providers should consider the age of the participants, sample sizes, TCM frequency and duration, and measurement tools.


Background: Methylsterol monooxygenase 1 (MSMO1), as a completely unique tumor biomarker, plays a vital role in the malignant progression of various cancer. Until now, the potential function and pathway of MSMO1 in the development of pancreatic cancer (PC) has not been explored yet, to our knowledge.Methods: We systematically explored the detail function of MSMO1 in Epithelial-mesenchymal transition (EMT) and cell proliferation of PC in vitro and in vivo.Results: MSMO1 expression was much lower in PC tissues than that in paired normal pancreas. MSMO1 positive expression was negatively associated with T stage, lymph node metastasis and vascular permeation of PC patients. Meanwhile, positive MSMO1 expression indicated a significantly better prognosis and an independent favorable prognostic factor. MSMO1 silencing promoted cell invasion and migration via activating EMT and PI3K-AKT-mTOR pathway  in Capan-2, Panc-1 and SW1990 cells. In vivo, subcutaneous tumor size was enhanced by MSMO1 silencing following with the consistent change of EMT and PI3K/AKT signaling shown in vitro. The motivation of EMT and PI3K-AKT-mTOR pathway was also demonstrated in MSMO1 silencing mouse PANC02 cells.Conclusion: Down-regulation of MSMO1 in PC was associated with advanced progression and poor prognosis of PC patients. MSMO1 acts as a tumor suppressor via inhibiting the aggressive malignant biology of PC accompanying with regulating EMT and PI3K/AKT signaling. All cell lines were detected for mycoplasma free before experiments.Capan-2, Panc-1, and SW1990 cell lines were offered by General Surgery Laboratory of China Medical University  and Panc02 cell lines was obtained from Cell Biology Institute of China Medical University. All cell lines were cultured in temperate situation according to the recommendation from ATCC, such as suitable culture medium within one percent penicillin-streptomycin combination  added ten percent fetal calf serum  and maintained in 37 °C humidified incubators filled with five percent COth AJCC Cancer Staging Manual was utilized to classify staging standard. Meanwhile, 22 pairs of PC fresh samples were collected under -80 °C condition for qRT-PCR assays.92 pairs of fresh pancreatic cancer samples and paired adjacent normal pancreatic tissues were collected from surgical treatment patients at the Gastrointestinal Surgery Department of the First Hospital of China Medical University and the General Surgery Department of the People's Hospital of Liaoning Province between 2010/9 and 2020/12. All the patients were with complete follow up data and pathologically diagnosed as PC. 8All C57BL/6 mice used in this study, weighting 20 to 25 g, were purchased from the company of Beijing Vital River Laboratory Animal Technology . The animals were kept in the specific pathogens free (SPF) Animal Experimental Ministry of China Medical University with standard conditions . Free access to rodent chow and water were applied for experimental animals. All animal experiments were performed strictly according to institutional regulations in facilities approved by the Animal Care Committee of China Medical University in accordance with Chinese government guidelines for animal experiments.2O2 and goat non-immune serum were utilized to block tissues for 30 minutes. Primary antibody incubated overnight with at 4 °C. Sections were incubated with the secondary antibody for 30 minutes at room temperature and then observed color reaction via using 3,3′ -diaminobenzidine (DAB). Immunohistochemistry (IHC) score was conducted as previously described Paraffin embedded PC tissues fixed by neutral formaldehyde. Tissues were used to cut 4 µm slices and dewaxing. Antigen retrieval was next done for 3 minutes under high pressure. Three percent HBriefly, xylene I and II each for 10 minutes was used to dewax the slices. 100%, 90%, 80%, 70% alcohol for 5 minutes each, hematoxylin for 5 minutes, 5% acetic acid differentiation for 1 minute, tap water for 1 minute, eosin for 3 minutes, 70%, 80%, 90%, 100% alcohol each for 10 seconds, xylene I and II for 5 minutes.We transfected Capan-2, PANC-1 and SW1990 cell lines with negative control and MSMO1 siRNA. Recommended growth media  containing 1% FBS was used to better induce EMT phenotype in transfected cell lines. The EMT construction model was confirmed by the alteration involving EMT-like cell morphology (a spindle-shaped and fibroblast-like morphology), EMT enhanced cell motility, and the changes of EMT-related markers, which were regarded to reflect the EMT process.RIPA lysis buffer containing 1% PMSF  was used to collect total protein from cell lines. 10% SDS-PAGE was used to separate protein and PVDF membranes were loaded with separate protein. All membranes were blocked with 5% degreasing milk and incubated with primary antibodies: MSMO1 (Abcam), E-cadherin (Abcam), β-catenin (Proteintech), Vimentin (Proteintech), AKT (Bimake), PI3K (Bimake), m-TOR (Bimake), p-AKT (Ser473) , p-PI3K (Tyr458) , p-mTOR (Ser2448) , GAPDH (Proteintech) overnight at 4 °C. Next day, membranes were incubated with secondary antibodies for two hours. Finally, blots were detected by ECL kit . The experiments were done thrice.Table 1. The total RNA and TaKaRa RNAiso Reagent  was used to synthesize cDNA. Finally, the QuantStudio 7 Pro Real-Time PCR System  was used to measure the mRNA expression of MSMO1 and GAPDH under the conditions as below: 95 °C for 30s, 45 cycles of 95 °C for 5s and 60 °C for 45s. The -ΔΔCt method with melt-curve dissociation was used to evaluate the quality of amplification products. The experiments were repeated three times.TRIZOL reagent  was used to extract total RNA from tissues samples, following the instructions. RNA level was maintained to the same level in each sample by using nucleotide test. GenePharma  provided the primers for qRT-PCR. The primer sequences were manifested in The MSMO1 siRNA and negative control (NC) were designed by OriGene . The verified sequence (OPF) of MSMO1 siRNA were as followed: Sense: GAAGCCCUUUAUUUUCUUAUTT. Anti-sense: AUAAGAAAUAAAGGGCUUCTT. Capan-2, Panc-1, and SW1990 cells were transiently transfected with MSMO1 siRNA and NC for 24 hours with lipo3000  following the instruction. In the result section, the silencing effect of MSMO1 was testified.5 cells/ml of Capan-2 cells, 3*10^5 cells/ml of Panc-1 cells and 1.5×106 cells/ml of SW1990 cells were implanted into chamber inserts with serum-free growth media in 24-well plates within growth media containing 10% FBS at the bottom of each well as a stimulus after transfected for 24 hours. 24 hours later, the per-cooling methanol was used to fix the migrated cells and the Crystal Violet (Sigma) was used for dyeing. The invasion assay was similar to migration that the top of membrane coated with Matrigel . A microscope  was used to calculate the final migrating and invading cells at 20× magnification in five random fields each chamber. Each independent experiment was performed thrice.Based on our previous study 6/ml, 100 ul). The selected mice are generally 4 weeks old and the middle of the armpit was chosen as the planting site. After injection, cotton swab was used to reduce bleeding and the overflow of the cell suspension from the injection site. Four weeks later, the mice were sacrificed and tumors were resected. The longest and shortest parts of the tumor are measured using a vernier caliper with the following formula: V=1/2*a*b2 . After the subcutaneous tumor is removed, a part of tumors was used for later extraction of protein and other was used for hematoxylin and eosin (HE) and IHC staining.To detect the function of MSMO1 in cell proliferation, total six C57B6 mice were used to construct subcutaneous tumor model by injecting PANC-02 cells resuspended in PBS which were transfected with MSMO1 siRNA and negative control respectively . Three independent experiments results were presented by mean ± SD. Discrepancises between two groups were compared through independent t test. MSMO1 and clinicopathological parameters were compared by chi-square test. To deal with survival curve, Kaplan-Meier method was utilized and significance was compared via log-rank test. Independent prognostic factors were evaluated by Cox's proportional hazards regression model. P<0.05 was considered as statistically significant.P<0.0001) Figure A. MSMO1 was mainly expressed in the cytoplasm with a small amount of nuclear expression in human PC tissues Figure B. Meanwhile, As the degree of tumor differentiation enhancing, the expression of MSMO1 increases Figure C. In current study, high MSMO1 expression was negatively relevant with T stage (P=0.025), lymph-node metastasis (P=0.046) and vascular permeation (P=0.009) of 92 PC patients Table , patients with low MSMO1 expression had a poor prognosis shown by Kaplan-Meier curve (P=0.01) Figure D. In addition, the low MSMO1 expression independently causes poor prognosis was observed by univariate and multivariate Cox's regression analysis results Table . Compared with the PC tissues, higher mRNA expression of MSMO1 in normal pancreatic tissues were shown by qRT-PCR assay (P=0.009) Figure F.In our study, IHC showed MSMO1 expression in human PC tissues  was lower compared with normal tissues  , p-AKT (Ser473) and p-mTOR (Ser2448)] was enhanced in MSMO1siRNA group Figure D-F. Based on the above results, the EMT induction and PI3K-AKT-mTOR signal pathway were both stimulated by MSMO1 silencing in PC cells in vitro.For the purpose of exploring the potential mechanism of MSMO1 in PC cell function. Capan-2 cells, Panc-1 cells and SW1990 cells was used for MSMO1 silencing construction, and protein was then extracted from transfected cells to conduct Western blot. We found MSMO1 silencing inhibited EMT related protein (E-cadherin) and enhanced others (β-catenin and Vimentin). Some EMT markers showed no change, such as C-myc Figure A, B. In histology, tumor tissues were observed by HE staining Figure C, besides, MSMO1 and E-cadherin expression were decreased but β-catenin, Vimentin, p-PI3K (Tyr458) and p-AKT (Ser473) expression were increased in Tumor was further confirmed by IHC Figure D. By western blot analysis, at protein level, Panc02 cell line exhibited E-cadherin expression was down-regulated, β-catenin, Vimentin, p-PI3K and p-AKT expression was up-regulated Figure F.We constructed the models of subcutaneous tumor by PANC02 cells which were transfected with MSMO1 siRNA and negative control (NC), respectively. Tumor volumes in MSMO1 siRNA group were much larger (P=0.0138) MSMO1, as a typical target in cholesterol biosynthesis, catalyzes the demethylation of C4-methylsterol in the cholesterol synthesis pathway and plays a key role in the normal synthesis of cholesterol in vitro.Several researches have implicated the clinical significance of MSMO1 expression in various cancers. In breast cancer patients, targeting MSMO1 with siRNA increases the resistance to endocrine therapy in vitro. Nowadays, the potential role of MSMO1 in cancer cells is still controversial. MSMO1 overexpression suppressed malignant cytological functional behavior in oligodendroglia cells EMT  is considered as the initiating factor that converts benign carcinoma to the malignance with the high metastatic growth dissemination involving various signal pathways Numerous evidences reveal E-cadherin is a critical EMT-related element in vitro. Thus, MSMO1 down-regulation facilitated EMT processing by mediating the PI3K/AKT/mTOR signaling pathway in PC, which is not reported yet. It is worthy noted that mTOR catalyze two multiprotein complexes, mTORC1 and mTORC2 in vivo.PI3K-AKT pathway plays a significant role in the malignant cellular function and the initiation of EMT in vitro and in vivo, which facilitates a novel diagnostic and therapeutic facility for PC. However, the corresponding mechanism is not further investigated in current study, which would be investigated in future.In conclusion, down-regulation of MSMO1 takes an important part in the aggressive clinical stage of PC patients. MSMO1 mediates EMT through activating PI3K-AKT-mTOR pathway


Families raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children with disabilities. This is the first online intervention program focusing on the empowerment of families raising children with disabilities who live at home in Japan.The program consists of four online peer-based group sessions. Moreover, the families engage in several activities in stages wherein they discover their own issues, find measures to resolve them, and take action, while visualizing interfamily relationships, including social resources, and the status of their family life, with facilitators and other peer members. This study is a non-randomized, waitlist-controlled trial. It compares the results of the intervention group (early group) and the waitlist-controlled group (delayed group). The participants are allocated to the early or delayed group in the order of their applications. The main outcome is family empowerment. Other outcomes are the caregiver burden, self-reported capability to use social resources, self-compassion, and the quality of life (QOL) of primary caregivers. The timeline of the online outcome evaluation is as follows: the initial evaluation (Time 1 [T1]) is conducted before the start of the first early group program, and post-intervention evaluation (Time 2 [T2]) is conducted immediately (within 1 week) after the early group completes all four sessions (4 weeks) of the program. Follow-up evaluation (Time 3 [T3]) is conducted 4 weeks after the post-intervention evaluation. This timing is the same in the delayed group, but the delayed group will attend the program after a 4-week waiting period, compared to the early group.The intention is to evaluate whether the provision of the program developed in this study and the evaluation test design are feasible and to verify the efficacy of this program.The UMIN Clinical Trials Registry (UMIN000044172), registration date: May 19, 2021.The online version contains supplementary material available at 10.1186/s40814-022-01190-1. With highly advanced medical treatment enabling lifesaving techniques and shortened hospital stays, there are an increasing number of children with severe disabilities who are cared for at home, from childhood. In Japan, there has been a rapid increase in the number of children with severe disabilities who need constant medical care. According to the Ministry of Health, Labor and Welfare, the number of children with severe disabilities aged 0–19 years who need constant medical care was 9403 in 2005, and this number has doubled to 20,155 in 2020 ) is conducted before the early group starts the first session. For the early group, this corresponded roughly to a week before attending the program. The post-intervention evaluation (Time 2 [T2]) is conducted immediately (within 1 week) after the early group completed all four sessions in the program (4 weeks). The follow-up evaluation (Time 3 [T3]) is conducted 4 weeks after the post-intervention evaluation. The timings are the same for the delayed group; however, it begins the program precisely 4 weeks after the early group does. That is, the delayed group completes the evaluation for T1 roughly 5 weeks before attending the program, T2 immediately before attending the program, and T3 immediately after completing the course.The response information is collected in the online survey system. Participants are allocated identity documents (IDs) that are linked to the response information, and every response of each participant from T1 to T3 can be linked. If there are multiple responses from the same person at the same time (duplications), it is assumed that it is because the respondent wished to correct their answer; hence, the later response is adopted. The data collected in the online survey system are backed up fortnightly. Once all the participants complete the follow-up evaluations, the data are downloaded from the system and stored as primary raw data.The primary outcome of this study is to determine the feasibility of a future study. Feasibility will be assessed through recruitment and retention rates assessed at pre-intervention through to T3. Acceptability will be assessed through participant feedback on satisfaction and adverse events with the conduct of the intervention collected at T3.The main outcome is family empowerment. Family empowerment is measured each time at T1–T3 using the Japanese version of the Family Empowerment Scale (FES) . FES evaSecondary outcomes are caregiver burden, self-reported capability to use social resources, self-compassion, and QOL of primary caregivers. Caregiver burden is measured using the short form of the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI-8) . The ZBIIt has been shown that parents raising children with disabilities have sleep disturbances, which creates a burden for parents . TherefoTwo original items are created regarding the use of social resources based on discussions among the researchers in our previous study . The firSelf-compassion is measured each time at T1–T3 using the short form of the Japanese version of the Self-Compassion Scale (SCS) . SCS is The QOL of the primary caregiver is measured each time at T1–T3 using the SF-8 . SF8 is In addition to these outcomes, the following questions are asked about basic attributes. At T1, the participants are asked about their relationship (from the child’s perspective), age (in 10-year increments), marital status, cohabitation status with partner, highest level of education, occupation, household income, and family members living in the same household. At T1, the following questions are asked about the child’s attributes: gender, age, name of the diagnosis, age at diagnosis, school attendance history, condition of disability, and required care. At T2 and T3, the respondents are asked if there are any changes in these circumstances and are asked to provide details if there are any. To ensure that the responses are not compulsory, the respondents are given the option of, “No response” and the online survey system is arranged so that respondents could progress to the next page without answering some or all questions.The respondents are asked the following questions in the questionnaire to evaluate the process after attending the program and four weeks later: How did you feel after attending the program? Did you tell your family about the content of the program and the information you learned? Would you recommend the program to your friends? How can the program be expanded? They are asked their opinion about the program .For the assessment of feasibility, which is the primary outcome of this study, descriptive statistics will be used to assess the feasibility outcomes, such as the recruitment and retention rate of participants across the intervention. Intervention acceptability will be assessed through analysis of the level of satisfaction, opinions, and free responses related to the program described and listed.This program is designed such that attending a total of four sessions enables participants to sequentially review their family situation including the relationships within their families and their social resources, their own, and their family members’ lives and to visualize their family relationships, burden, and the use of services. Specifically, after attending the program, participants are expected to have an improved sense of family empowerment immediately, including establishing and practicing specific and feasible plans. Therefore, to verify the effectiveness of the program, the primary outcome measure is the total FES score at T2. The secondary outcomes are to verify improvement in the levels of family empowerment , whether aspects directly addressed in the program had improved , and whether they had a comprehensive effect . Furthermore, whether any interventional effect observed at T2 is sustained (each outcome score at T3 for the early group), and whether any interventional effect observed in the early group is reproduced (each outcome score at T3 for the delayed group) is verified. The statistical analysis plan is described as follows:t test, the Mann-Whitney U test, and Fisher’s exact probability test.The responses, wherein the outcome scores can be calculated as valid responses, are used. ITT analysis is performed to manage data from participants who deviate from the study protocol by not attending the program at the designated times as the original allocation group. First, descriptive statistics are calculated for the background attributes and outcome scores of the participants (both the participant and the child) at T1. The interval scale is used to calculate the mean and standard deviation; ordinal and nominal scales are used to calculate the frequency and proportion, and intergroup comparison is performed using Welch’s There is a possibility of participants dropping out between T1 and T2 and between T2 and T3. Therefore, we compare the background attributes and outcome scores at T1 between the primary outcomes “total FES score of valid respondents at T2” and “non-respondents at T2 ” to examine and discuss the effect caused by participants dropping out. In addition, an intergroup comparison of background attributes and outcome scores at T1 is conducted for a population of only the “total FES score of valid respondents at T2.” If group differences that may create significant bias or biased dropouts are observed in the analysis to date, we aim to consider adding those variables as covariates in subsequent analyses.The primary analysis is an intergroup comparison using analysis of covariance with the total FES score at T1 as the covariate, and the total FES score at T2 as the dependent variable. In case of a significant interaction between the independent variable (group: early group or delayed group) and the covariate , an intergroup comparison is conducted using ANOVA without considering the scores at T1. The level of statistical significance is set as 5%. Interim analysis is not performed. Subgroup analysis is conducted for children with severe disabilities, children with disabilities who need constant medical care, and single-parent households. We also examine whether the increase in the total FES score from T1 to T2 is clinically significant. However, the clinical minimum significant difference for FES is not clear; therefore, this is discussed through a comparison with a previous study .t test to determine whether the intervention effect observed at T2 is sustained. The results at T2 and T3 for the delayed group are examined using a paired t test to determine whether the intervention effect observed in the early group is reproduced in the delayed group.An intergroup comparison is similarly conducted for the secondary outcomes using the analysis of covariance for each outcome at T2. The results at T1 and T3 for the early group are examined using a paired The following two analyses are conducted as a sensitivity analysis of the primary analysis. The first is a re-analysis of the dropouts from T1 to T2 with the amount of change in the total FES score set as 0, to consider the effect of dropouts. The second is a per-protocol analysis. That is, re-analysis is conducted to compare the results of participants who attended all four sessions of the program (group) to all others (group).All self-reported data is entered directly into a web-based data capture system via an online survey. Only the researchers on the team have access to the data set, and the data is password protected. We believe that this study is low-risk, and therefore, a data monitoring committee is not necessary.We previously developed a peer-group-based online intervention program with the aim of empowering families to raise children with disabilities. There are few evidence-based programs in the literature that employ intervention programs for families raising children with disabilities , 28. ThiThe family empowerment program we developed for families raising children with disabilities uses a participant-led approach, enabling participants to discover their own problems, and find and act on measures to resolve those problems through activities, while visualizing interfamily relationships, including social resources, and the current family situation. These peer group-based activities are performed in stages, and the expected outcomes for the participating families include improved empowerment, reduced caregiver burden, and improved utilization of social resources. An expected secondary effect of participation in a peer group-based program is the formation of social-support networks for these families.Parents of children with disabilities are always busy raising and caring for these children and their siblings and are unable to get enough sleep or free time for themselves. Therefore, it is difficult for them to participate in intervention programs. However, we have improvised the content of the program such that it could be conducted online during the coronavirus disease 2019 (COVID-19) crisis. Consequently, this approach allows families to connect with other families located far away who are also raising children with disabilities, without leaving home. The participants are able to share their experiences of discovering their own problems and find measures to resolve these problems, thus increasing the feasibility of the program.Converting the results of this study to an evidence-based community program and widely disseminating the program is a challenge. In the future, it will be necessary to verify the effectiveness of this program and to determine if there are any adverse effects of running pilot tests. It is also essential to improve the program based on the results of the verification.Additional file 1. SPRIT 2013 Checklist: Recommended items to address in a clinical trial protocol and related documents.Additional file 2. The TIDieR (Template for Intervention Description and Replication) Checklist: Information to include when describing an intervention and the location of the information.


Caregivers of persons with young-onset dementia (YOD) have an explicit need for tailored information and support about YOD. Therefore, during the European RHAPSODY project a web-based information and support program for YOD caregivers was developed. The program was recently tailored to the Dutch context. This study evaluates the Dutch version on user acceptability, usability, user satisfaction, and user behavior.A cross-sectional study was conducted to evaluate the publicly available Dutch RHAPSODY program. A pop-up survey, extensive survey, and a semi-structured interview were used to evaluate how visitors perceived the program in terms of acceptability, usability, and their satisfaction. Web metrics registered user behavior. Quantitative data were analyzed using descriptive statistics and a deductive content analysis was used to analyze qualitative data.A total of 26 participants completed the pop-up survey, 19 completed the extensive survey, and 10 participated in the semi-structured interviews. Most participants were caregivers and healthcare professionals. They perceived the program as acceptable and usable in daily life and were satisfied with the quality of the content. The majority would use the program again and recommend it to others. Participants emphasized the necessity and desirability of a central platform incorporating educational and practical information about YOD. The page with an explanation about what YOD entails was most viewed (360 unique page views). Most time was spent on the page about the diagnostic process (6.5 min).The Dutch RHAPSODY program showed good user acceptability, usability, and user satisfaction. The program met the need for tailored information and support regarding YOD and adds value to existing available support for YOD caregivers. Raising awareness about the program's existence among healthcare professionals may help caregivers to find appropriate post-diagnostic information. The program also provides educational opportunities for healthcare professionals. •The RHAPSODY program is tailored to the Dutch context, and is publicly available.•The program met the informational needs of young-onset dementia caregivers.•Participants reported the program is acceptable and usable in daily life.•The program adds value to existing available support for caregivers.•Involving stakeholders in an early phase contributes to sustainable implementation. Two of Coping with these symptoms poses unique challenges for caregivers of persons with YOD and can result in high levels of burden, distress, and depressive symptoms . SpousalCaregivers experience significant difficulty in coping with these circumstances and express an explicit need for age-appropriate professional support . CurrentStudies so far have demonstrated that web-based services are flexible, easily accessible, and cost-effective, especially in areas hindered by geographical barriers . Previou2Alzheimer Nederland], www.dementie.nl [Online training dementie op jonge leetijd]. The guidelines of the CONSORT-EHEALTH were used for reporting the results of this study , the aim was to recruit 15–20 participants . Informa2.32.3.1Participants were asked about their background in the pop-up survey. In the additional, extensive survey, more detailed questions were asked about either their relationship to the person with YOD or about their healthcare profession. Participants were also asked about their gender and age.2.3.2Quantitative and qualitative measures provided insight in user acceptability, usability, and user satisfaction. User acceptability was defined as the perceived ease of use and usefulness of the Dutch RHAPSODY program . SimilarUsability was defined as the extent to which the Dutch RHAPSODY program could be used in daily life and meet the needs of the target group . To illuUser satisfaction referred to the quality and relevance of the program's content and likelihood of recommending the Dutch RHAPSODY program to others. Similar to the study performed by The in-depth and semi-structured interviews were audio-recorded and conducted via telephone by two researchers (MD and KP). Interviews lasted around 40 min. A semi-structured interview guide was used to provide insight in user acceptability, usability, and user satisfaction see . For exa2.3.3Web metrics were collected anonymously to investigate the behavior of visitors in terms of the number and duration of page visits. Due to settings of the web page, a visitor would count as a unique page visitor once every 24 h. Meaning that if a visitor returns to the program after 24 h, a new unique page view was registered. Web metrics were also gathered three months after the evaluation study to monitor the implementation of the Dutch RHAPSODY program.2.4Quantitative data was analyzed using SPSS Statistics version 27. Descriptive statistics were calculated  to explore participant characteristics, user acceptability, usability, user satisfaction, and to analyze the web metrics. The qualitative data was analyzed using a deductive content analysis, using interview transcripts . Qualita2.5Pop-up surveys are structurally used by the website of the Dutch Alzheimer's Society to monitor user satisfaction, no consent form was needed. Prior to participation in the extensive survey and in-depth interview, participants received an information letter by email and gave online informed consent for participation. The study protocol was approved by The Faculty of Health, Medicine and Life Sciences Research Ethics Committee of Maastricht University (FHML-REC/2020/090).3A total of 26 participants completed the pop-up survey. Next, 19 participants completed the extensive survey, and 10 participated in the in-depth interviews. The two recruitment routes are shown in 3.1The majority of participants who completed the pop-up survey had a relative with dementia (53.8%) or were professionally involved with dementia (46.2%). A varied sample of participants completed the extensive survey and participated in the in-depth interviews, such as spouses, children, or other relatives of persons with different YOD-subtypes, and healthcare professionals with different backgrounds .Table 1P3.2Most participants who completed the extensive survey had high levels of computer self-efficacy . The majIn the in-depth interviews, participants expressed they had mixed feelings regarding the ease of use. Some experienced the navigation within the program as clear, whereas others experienced it as confusing. Participants suggested minor improvements to enhance the navigation. For example, a clear home-button redirecting to the landing page, a table of contents at the start of each chapter, and providing clarification if a hyperlink led to an external web page.‘Sometimes it was hard to know where you were in the program. I wondered how to go back to the landing page, especially if a link led me to an external web page.’- Dementia care coordinator3.3Nine out of 19 participants (47.4%) who completed the extensive survey agreed it was challenging to find time to follow the program, five participants (26.3%) disagreed, and the remaining five (26.3%) neither agreed nor disagreed. Furthermore, two-thirds of the participants reported the level of detail, number of chapters, duration of chapters, and overall length of the program as exactly right, while the remaining one-third rated it as a lot.Participants valued the possibility to follow the program at any time and any location. Although most participants indicated the program contained comprehensive information, it was highlighted that this is necessary for a topic like YOD. According to participants, the wide range of information provided a reason to return to the program at a later stage when other topics are applicable.‘The program contains comprehensive information, but all the information is needed. YOD is a complex and diverse disease.’- Dementia counselorFurthermore, participants valued the language use in the program, and expressed it was understandable for those with and without a medical background. They felt the Dutch RHAPSODY program was relevant for YOD caregivers and healthcare professionals but also for persons not directly involved with YOD. For example, to create awareness and understanding about YOD among employers.3.4Participants who completed the extensive survey were highly satisfied with the overall quality of the program, as 94.7% rated the quality as good to excellent. Participants valued the relevance, understandability, and applicability of the content in daily life. Moreover, they rated each individual chapter and the reflective questions as useful. Approximately 80% of participants rated the overall layout and the layout of each individual chapter as clear. On the pop-up survey, 21 of 26 participants (80.8%) agreed or totally agreed the program helped in coping with YOD in daily life. The vast majority would recommend the program to others . Qualitatively, participants highlighted the need for a program including educational and practical information about YOD bundled in one place.‘As a caregiver, there is always the question ‘where do I find all the information?’. You can't see the forest for the trees. After looking into this program, this is the place where I would recommend people visit.’- Daughter of a person with Alzheimer's dementiaParticipants experienced the alternation between texts and videos as pleasant. The great usefulness and applicability of practical tips were mentioned serval times during the interviews. Furthermore, participants recognized the information in their own daily experience and felt it retrospectively enhanced their understanding of symptoms of YOD. Participants were satisfied with the variety of topics covered in the program, especially regarding different subtypes of YOD, coping with behavioral symptoms, and availability of care and support services. Nevertheless, several participants felt they had already obtained some of the information themselves in the past years. Thus, not all information was still relevant anymore.‘At the beginning we searched for a lot of information. If only I had this training before, it would have been of great help, also to better understand my wife's behavior.’- Husband of a person with frontotemporal dementia‘The tips provided in the program are good. Not only for caregivers but also for persons with dementia themselves.’- Person with Alzheimer's dementia3.5The landing page of the Dutch RHAPSODY program registered 2461 unique page views between October and December 2020 see . The pag4Our quantitative and qualitative findings demonstrate a good user acceptability, usability, and user satisfaction of the Dutch RHAPSODY program. Participants indicated they would use the program again and would recommend it to others. In-depth interviews emphasized the high need for education and tailored information about YOD to be collected in one place, which the RHAPSODY program provided. Both caregivers and healthcare professionals were satisfied with the quality of the content and topics, such as information on different YOD-subtypes, coping with behavioral symptoms, and available care and support services. Minor suggestions for improvement were identified, such as enhancing the navigation within the program.Participants valued the usefulness, relevance, and applicability of the content in daily life. These results are consistent with the previous study on other versions of the RHAPSODY program . For YODApproximately one-third of the participants reported that the program contained a considerable amount of information, which may explain why nine out of the nineteen persons agreed that it was difficult to allocate time to follow it. For caregivers, it can be difficult to find time to follow such a program as they already have to balance caregiving with other responsibilities, such as work, raising children, and maintaining social relationships . Interviwww.dementie.nl). This partnership and adapting the program to the wider implementation context contributes to its sustainable implementation, which facilitates translating interventions into practice (The Dutch RHAPSODY program was launched and evaluated during the COVID-19 pandemic, a time when there was a heightened need for and usage of digital support programs for caregivers of persons with dementia . The panpractice . Our webIn order to allow timely access to age-appropriate information regarding YOD, it is recommended that caregivers be made aware of the program after their relative has received the diagnosis. Our findings reveal that participating caregivers had spent considerable time searching for reliable information online beforehand. Therefore, creating greater awareness about the Dutch RHAPSODY program is an important future direction. Healthcare professionals involved in the early phase of the caregiver trajectory, such as dementia case managers, play an essential role in getting the right information at the right time to the right caregiver. Their actively and personally informing of caregivers about the program will likely stimulate caregivers to use it. This may also improve adherence, which is often limited in web-based programs . Other dAlthough web-based programs are considered as easily accessible, previous research indicates that online support should be offered in addition, and cannot entirely replace face-to-face support of a healthcare professional . The RHAOur findings show that nearly half of the participants who completed the pop-up survey were healthcare professionals. This percentage is relatively high considering that caregivers are the primary target group of the program. This may indicate there is an educational need among healthcare professionals regarding YOD as well. Previous studies demonstrated that educational e-learning programs allow healthcare professionals to boost their knowledge . Therefo4.1An important strength of the Dutch RHAPSODY program is that it was based on an international evidence-based program. This allowed us to cost-effectively dedicate our resources to tailor it to the Dutch context in close collaboration with caregivers, healthcare professionals, and field experts. Another strength is that the current study allowed all visitors who accessed the program to participate in the evaluation study. No strict inclusion or exclusion criteria were defined as the program was freely and publicly accessible. This allowed for various ways of recruiting, for example via newsletters, social media, and flyers. For sustainable implementation, the program was embedded on the well-visited website of the Dutch Alzheimer's Society. Communication about this helped to raise awareness about the program's existence in a large audience of caregivers and healthcare professionals. Additionally, it ensures free, public, and structural access to the program.The current study is accompanied by some limitations, such as the relatively small and heterogeneous sample, that may impede the generalizability of the results. Partly, the limited number of responses may be the result of visitors clicking away the pop-up survey. Participants who clicked away the pop-up survey did not receive a reminder. Moreover, the pop-up survey only appeared if participants visited a page longer than 30 s. In addition, although the web metrics are a valuable contribution to the study, they should be interpreted with caution. For example, the duration of page visits is difficult to interpret as the amount and type of information per page differed, there is no insight into whether visitors viewed the program on different devices, or if they paused the online program while using it.5The Dutch RHAPSODY program provides an opportunity to educate and inform YOD caregivers sustainably. Findings indicated good user acceptability, usability, and user satisfaction. The program met the information needs of YOD caregivers, and the provided information was useful in daily life. Improvements are made by facilitating better navigation within the program, including providing a table of contents and a clear home-button redirecting to the landing page. Furthermore, the RHAPSODY program has potential as an educational tool for healthcare professionals. Therefore, raising awareness about the RHAPSODY program among early stage YOD caregivers and their healthcare professionals is recommended. The partnership with the Dutch Alzheimer's Society is important as it facilitates the sustainable implementation of the program. A future research recommendation would be to reuse existing interventions that have shown positive effects in supporting YOD caregivers, and tailor them to its wider implementation context. In order to ensure that there is a comprehensive and varied range of support tailored to the specific needs of the caregivers.10.13039/501100001826Dutch national Organisation for Health Research and Development [ZonMw] and the Dutch Alzheimer's Society [Alzheimer Nederland]. RHAPSODY is a EU Joint Program Neurodegenerative Disease Research project.The project was funded by The The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.