Dataset Information

Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study.

ABSTRACT: BACKGROUND:Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals' self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors have attempted to address these two issues by focusing on the design and development processes of apps, concrete efforts to systematically select evidence-based content are scant. OBJECTIVE:The objective of this study was to present a procedure for the participatory identification of evidence-based content to ground the development of a self-management app. METHODS:To illustrate the procedure, we focused on the prevention and management of pressure injuries (PIs) in individuals with spinal cord injury (SCI). The procedure involves the following three steps: (1) identification of existing evidence through review and synthesis of existing recommendations on the prevention and self-management of PIs in SCI; (2) a consensus meeting with experts from the field of SCI and individuals with SCI to select the recommendations that are relevant and applicable to community-dwelling individuals in their daily lives; and (3) consolidation of the results of the study. RESULTS:In this case study, at the end of the three-step procedure, the content for an mHealth intervention was selected in the form of 98 recommendations. CONCLUSIONS:This study describes a procedure for the participatory identification and selection of disease-specific evidence and professional best practices to inform self-management interventions. This procedure might be especially useful in cases of complex chronic health conditions, as every recommendation in these cases needs to be evaluated and considered in light of all other self-management requirements. Hence, the agreement of experts and affected individuals is essential to ensure the selection of evidence-based content that is considered to be relevant and applicable.

SUBMITTER: Fiordelli M

PROVIDER: S-EPMC7270844 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study.

Fiordelli Maddalena M Zanini Claudia C Amann Julia J Scheel-Sailer Anke A Brach Mirjam M Stucki Gerold G Rubinelli Sara S

JMIR mHealth and uHealth 20200520 5

<h4>Background</h4>Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals' self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors ...[more]

PMID: 32432559

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Project description:BackgroundAcute, severe traumatic spinal cord injury often causes fecal incontinence. Currently, there are no treatments to improve anal function after traumatic spinal cord injury. Our study aims to determine whether, after traumatic spinal cord injury, anal function can be improved by interventions in the neuro-intensive care unit to alter the spinal cord perfusion pressure at the injury site.MethodsWe recruited a cohort of patients with acute, severe traumatic spinal cord injuries (American Spinal Injury Association Impairment Scale grades A-C). They underwent surgical fixation within 72 h of the injury and insertion of an intrathecal pressure probe at the injury site to monitor intraspinal pressure and compute spinal cord perfusion pressure as mean arterial pressure minus intraspinal pressure. Injury-site monitoring was performed at the neuro-intensive care unit for up to a week after injury. During monitoring, anorectal manometry was also conducted over a range of spinal cord perfusion pressures.ResultsData were collected from 14 patients with consecutive traumatic spinal cord injury aged 22-67 years. The mean resting anal pressure was 44 cmH2O, which is considerably lower than the average for healthy patients, previously reported at 99 cmH2O. Mean resting anal pressure versus spinal cord perfusion pressure had an inverted U-shaped relation (Ȓ2 = 0.82), with the highest resting anal pressures being at a spinal cord perfusion pressure of approximately 100 mmHg. The recto-anal inhibitory reflex (transient relaxation of the internal anal sphincter during rectal distension), which is important for maintaining fecal continence, was present in 90% of attempts at high (90 mmHg) spinal cord perfusion pressure versus 70% of attempts at low (60 mmHg) spinal cord perfusion pressure (P < 0.05). During cough, the rise in anal pressure from baseline was 51 cmH2O at high (86 mmHg) spinal cord perfusion pressure versus 37 cmH2O at low (62 mmHg) spinal cord perfusion pressure (P < 0.0001). During anal squeeze, higher spinal cord perfusion pressure was associated with longer endurance time and spinal cord perfusion pressure of 70-90 mmHg was associated with stronger squeeze. There were no complications associated with anorectal manometry.ConclusionsOur data indicate that spinal cord injury causes severe disruption of anal sphincter function. Several key components of anal continence (resting anal pressure, recto-anal inhibitory reflex, and anal pressure during cough and squeeze) markedly improve at higher spinal cord perfusion pressure. Maintaining too high of spinal cord perfusion pressure may worsen anal continence.

Project description:IntroductionWhile healthcare transition (HCT) interventions are recognised as an important area in paediatric rehabilitation, there has been limited research focusing on young people with spinal cord injuries (SCI). In this study, researchers will collaborate with young people with SCI and their parents/caregivers to develop, implement and evaluate the feasibility and acceptability of a HCT intervention aimed at supporting young people with SCI during their transition from paediatric to adult healthcare services.Methods and analysisA participatory action research (PAR) approach will be used to co-develop the HCT intervention with young people with SCI aged 14-25 years and their parents/caregivers. Three phases will be conducted to address the five objectives of this study. Phase 1 will use semi-structured interviews to explore young people and parent/caregivers' experiences of HCT. In Phase 2a, both young people and parent/caregivers will be co-researchers. They will be included in the analysis of the interviews and will be asked to participate in co-design workshops to inform the development of a prototype HCT intervention. In Phase 2b, using focus groups, feedback on the prototype HCT intervention will be collected. In Phase 3, the refined prototype HCT intervention will be implemented, and young people with SCI and parent/caregivers will evaluate the feasibility and acceptability of the HCT intervention in semi-structured interviews. A reference group, including stakeholders and end users, will be consulted at different time points.Ethics and disseminationThe study has received ethics approval from Western Sydney University Human Research and Ethics Committee (H14029). The researcher will use the results of this study as chapters in a thesis to obtain a Doctor of Philosophy degree. The findings will be disseminated via publication in peer-reviewed journals and will be presented at local, national or international conferences.Trial registration numberACTRN12621000500853.

Project description:BackgroundPressure ulcers (PUs) on the buttocks are among the most common secondary complications in individuals with chronic spinal cord injury (SCI). PUs can result from sitting for extended periods, disuse atrophy, increased sitting pressure and reduced circulation. Compared with usual care, activation of paralysed muscles using electrical stimulation (ES) has been shown to markedly increase paralysed muscle mass, improve circulation of skin and muscle and improve sitting pressure distribution. ES might therefore be a useful method to reduce PU incidence.MethodsA multicentre randomized controlled trial (SCI PREVOLT) will be conducted with an economic and process evaluation alongside. One hundred participants with a SCI in the chronic phase and a minimal incidence of 1 PU in the last 5 years will be recruited from rehabilitation centres across the Netherlands. Participants will be stratified by centre and age and randomized to the intervention or control group. The intervention group will use ES at least 1 h/day during at least 4 times a week for 1 year next to usual care. The control group will only receive usual care. The primary outcome is the incidence of PUs, measured by a blinded person assessing the presence or absence of a PU on the buttocks on a photo made by the participant or his/her caregiver. The incidence of a PU will be evaluated every 2 weeks. Secondary outcomes include interface pressure distribution, blood flow in the profunda femoris artery, muscle thickness of the hamstrings and gluteal muscles and questionnaires about different dimensions of life, e.g. participation and quality of life. Secondary outcomes will be measured at baseline and 3, 6, 9 and 12 months after randomization.DiscussionThis study will assess if electrical stimulation is a (cost-)effective method to prevent PUs and reduce the risk factors of getting PUs. If ES is effective and cost-effective compared with usual care, ES could be implemented in daily treatment of individuals with a SCI.Trial registrationNetherlands Trials Register NTR NL9469 . Registered on 26 May 2021.

Project description:BackgroundEven though weight management is essential for the health of individuals with spinal cord injuries and disorders (SCI/D), little is known about current practices, barriers, and facilitators.ObjectiveTo describe weight management delivery in the Veterans Affairs (VA) SCI/D System of Care, including barriers and facilitators experienced by health care providers.MethodsQualitative focus groups were conducted in person at 4 geographically dispersed VA medical facilities delivering care to Veterans with SCI/D. Thirty-two employees involved in weight management efforts participated. Audio-recordings were transcribed and analyzed using qualitative content analysis techniques.ResultsParticipants at SCI centers reported that weight management treatment was delivered through the center by a multidisciplinary team using education (eg, written materials) and counseling/consults. Participants at SCI spoke facilities generally depended on facility-level programs (eg, MOVE!) to deliver treatment. Spoke facilities discussed barriers to delivering treatment through their SCI team, including staff shortages and resource and structural issues. MOVE! staff discussed barriers, including limited wheelchair space in classrooms. Staff participants across facilities noted that Veterans with SCI/D were hesitant to use facility-level programs, because of nonspecific SCI-relevant information and discomfort attending sessions with general Veterans. Other barriers, for both centers and spoke facilities, included necessary medications that increase weight, lack of evidence-based guidelines for weight management, safety concerns, and facility layout/accessibility. Facilitators included facility leadership support, provider involvement/prioritization, and community resources.ConclusionsWeight management programs delivered through the SCI team, with peers and SCI-relevant content, are likely more acceptable and beneficial to individuals with SCI/D. Program classrooms should provide ample space for individuals with SCI/D.

Project description:BACKGROUND:Individuals with chronic spinal cord injuries (SCIs) have an increased prevalence of cardiovascular disease (CVD) and associated risk factors compared with age-matched control subjects. Exercise has been shown to improve selected CVD risk factors in individuals with SCI, but using nutrition education as an intervention has not been evaluated in this population. This paper describes our research plan for evaluating the effect of nutrition education on individuals with SCI. In the present study, called Eat Smart, Live Better, we are using a randomized controlled design to test an intervention adapted from an existing evidence-based program that showed a positive effect on nutrition knowledge and behavior of older adults from the general population. There will be an inpatient group (n?=?100) and a community group (n?=?100). The aims of our study are to compare the intervention and control groups for (1) changes in nutritional behavior, nutritional knowledge, and dietary quality by participants in the program; (2) levels of adiposity and metabolic CVD risk factors at 12-month follow-up; and (3) differential effects among individuals with SCI in the acute rehabilitation setting and those living in the community. METHODS/DESIGN:This is a randomized controlled trial of nutrition education. The treatment groups receive six nutrition education sessions. The control groups receive the one "standard of care" nutrition lecture that is required by the Commission on Accreditation of Rehabilitation Facilities. Treatment groups include both an inpatient group, comprising patients who have been admitted to an acute rehabilitation facility because of their recent SCI, and an outpatient group, consisting of community-dwelling adults who are at least 1 year after their SCI. A total of 200 participants will be randomized 1:1 to the intervention or control group, stratified by location (acute rehabilitation facility or community dwelling). DISCUSSION:To our knowledge, this will be the first reported study of nutrition education in individuals with SCI. The low cost and feasibility of the intervention, if shown to improve nutritional behavior, suggests that it could be implemented in rehabilitation facilities across the country. This has the potential of lowering the burden of CVD and CVD risk factors in this high-risk population. TRIAL REGISTRATION:ClinicalTrials.gov, NCT02368405 . Registered on February 10, 2015.

Project description:ObjectivesRugby-related spinal cord injuries (SCIs) are rare but life altering and traumatic events. Little is known about the long-term consequences and outcomes of players who have sustained these injuries. This study investigated current quality of life (QoL) and factors associated with QoL, among individuals with rugby-related SCI in South Africa, by using the International Classification of Functioning, Disability and Health (ICF) framework.DesignDescriptive cross-sectional study.SettingRugby-related SCI population of South Africa, as captured in the BokSmart/Chris Burger Petro Jackson Players' Fund database.ParticipantsNinety (n=90) of the 102 eligible players on the database agreed to participate in the study.Main outcome measureThe relationship between QoL, as measured with the WHO Quality of Life questionnaire (WHOQOL-BREF) and specific independent variables (demographic information, level of independence and participation in various activities and life roles) was investigated. Variables that were significantly associated with QoL in bivariate analyses were included in multiple linear regression analyses.ResultsThe mean score and SD of the WHOQOL-BREF was 15.1±2.3?arbitrary units. Participation (an ICF framework construct) and income were significantly associated with overall QoL (p<0.001). Participation was the only variable significantly associated with all QoL subdomains (p<0.001). Additionally, number of health concerns, type of healthcare (public vs private) and level of education were significantly associated with various QoL domains (p<0.001).ConclusionsOn average, these individuals with rugby-related SCI presented with higher QoL scores than other comparable SCI studies. However, lower levels of participation and income, certain levels of education, increased health concerns and use of public healthcare were associated with lower levels of QoL. Sporting bodies have a responsibility to optimise player welfare, by acting on the modifiable factors associated with QoL.

Dataset Information

Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study.

Publications

Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study.

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