cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.6084/m9.figshare.25809597.v1
title: An online pain management program for people with hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder: a three-staged development process

description: Hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD) are painful, chronic and multi-systemic conditions. No online pain management programs for hEDS/HSD currently exist. We aimed to develop one by exploring what people with hEDS/HSD want in such programs. A Delphi was conducted via online surveys of stakeholders: participants with hEDS/HSD and healthcare professionals (HCP). In survey 1, participants were asked if a hEDS/HSD-specific online pain management program was important, listing up to 20 topics important to know about pain. In survey 2, participants rated the importance of those topics. Consensus was set as ≥75% rating of at least “important”. Using topics that reached consensus, the online program was developed. Usability testing was performed using the Systems Usability Scale (SUS). 396 hEDS/HSD and 29 HCP completed survey 1; 151 hEDS/HSD and 12 HCP completed survey 2. 81% of hEDS/HSD and 69% of HCP rated a hEDS/HSD-specific program as at least “important”. Thirty-five topics reached consensus to guide content for the HOPE program (Hypermobile Online Pain managemEnt). SUS score was 82.5, corresponding to “high acceptability”. A hEDS/HSD-specific online pain management program is important to stakeholders. Utilising a Delphi approach to incorporate stakeholder input, an evidence-informed and user appropriate program was developed. Pain is one of the most common and impactful symptom affecting those with Hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD).Online pain management programs are effective in other chronic conditions such as Fibromyalgia and Rheumatoid Arthritis, but there are no programs specific for hEDS/HSD.People with hEDS or HSD and healthcare professionals with experience in these conditions feel that an online pain management program specific to their condition is important; consensus revealed thirty-five key topics important to these stakeholders.The first hEDS/HSD-specific online pain management program, called HOPE, was developed with stakeholder input and usability tested, ready for clinical trial testing. Pain is one of the most common and impactful symptom affecting those with Hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD). Online pain management programs are effective in other chronic conditions such as Fibromyalgia and Rheumatoid Arthritis, but there are no programs specific for hEDS/HSD. People with hEDS or HSD and healthcare professionals with experience in these conditions feel that an online pain management program specific to their condition is important; consensus revealed thirty-five key topics important to these stakeholders. The first hEDS/HSD-specific online pain management program, called HOPE, was developed with stakeholder input and usability tested, ready for clinical trial testing.
DOI: 10.6084/m9.figshare.25568045.v1
title: Educating for supported decision making and shared decision making: a scoping review of educational design and outcomes for education and training interventions

description: To characterise existing knowledge about the design and learning outcomes of education and training programs for supported or shared decision making. A scoping review was performed to identify academic and grey literature, published between January 2006 and February 2022, that reported on the design and/or learning outcomes of supported or shared decision making education or training programs. Eligible literature was mapped across domains of educational design and Kirkpatrick’s hierarchy of learning effectiveness, and then qualitatively synthesised using cross-case analysis. A total of 33 articles were identified (<i>n</i> = 7 for supported decision making and <i>n</i> = 26 for shared decision making) that provided education or training to supporters of persons with mental illness or substance use disorders (<i>n</i> = 14), dementia or neurocognitive disorders (<i>n</i> = 6), cognitive disability (<i>n</i> = 5), mixed populations (<i>n</i> = 1), and those receiving end-of-life care (<i>n</i> = 7). In their design, most programs sought specific changes in practice (behaviour) <i>via</i> experiential learning. Reported educational outcomes also focused on supporter behaviour, with limited evidence for how changes in learner attitudes, skills, or knowledge might be contributing to changes in supporter behaviour. Future education and training would benefit from a closer engagement with theories of teaching and learning, particularly those oriented towards co-design. Existing education and training programs for supported and shared decision making have a solid focus on modifying supporter behaviour through information provision, reflective practice, and modelling and coaching desired behaviour.To fully realise supported decision making, education and training programs would benefit from a focus on program co-design and working within a socio-ecological model of supported decision making.Future evaluations of supported decision making education should draw from both quantitative and qualitative approaches, with a focus on identifying the learning processes through which education influences supporter behaviour, organisational practices, and client/patient outcomes. Existing education and training programs for supported and shared decision making have a solid focus on modifying supporter behaviour through information provision, reflective practice, and modelling and coaching desired behaviour. To fully realise supported decision making, education and training programs would benefit from a focus on program co-design and working within a socio-ecological model of supported decision making. Future evaluations of supported decision making education should draw from both quantitative and qualitative approaches, with a focus on identifying the learning processes through which education influences supporter behaviour, organisational practices, and client/patient outcomes.
DOI: 10.6084/m9.figshare.25568045
title: Educating for supported decision making and shared decision making: a scoping review of educational design and outcomes for education and training interventions

description: To characterise existing knowledge about the design and learning outcomes of education and training programs for supported or shared decision making. A scoping review was performed to identify academic and grey literature, published between January 2006 and February 2022, that reported on the design and/or learning outcomes of supported or shared decision making education or training programs. Eligible literature was mapped across domains of educational design and Kirkpatrick’s hierarchy of learning effectiveness, and then qualitatively synthesised using cross-case analysis. A total of 33 articles were identified (<i>n</i> = 7 for supported decision making and <i>n</i> = 26 for shared decision making) that provided education or training to supporters of persons with mental illness or substance use disorders (<i>n</i> = 14), dementia or neurocognitive disorders (<i>n</i> = 6), cognitive disability (<i>n</i> = 5), mixed populations (<i>n</i> = 1), and those receiving end-of-life care (<i>n</i> = 7). In their design, most programs sought specific changes in practice (behaviour) <i>via</i> experiential learning. Reported educational outcomes also focused on supporter behaviour, with limited evidence for how changes in learner attitudes, skills, or knowledge might be contributing to changes in supporter behaviour. Future education and training would benefit from a closer engagement with theories of teaching and learning, particularly those oriented towards co-design. Existing education and training programs for supported and shared decision making have a solid focus on modifying supporter behaviour through information provision, reflective practice, and modelling and coaching desired behaviour.To fully realise supported decision making, education and training programs would benefit from a focus on program co-design and working within a socio-ecological model of supported decision making.Future evaluations of supported decision making education should draw from both quantitative and qualitative approaches, with a focus on identifying the learning processes through which education influences supporter behaviour, organisational practices, and client/patient outcomes. Existing education and training programs for supported and shared decision making have a solid focus on modifying supporter behaviour through information provision, reflective practice, and modelling and coaching desired behaviour. To fully realise supported decision making, education and training programs would benefit from a focus on program co-design and working within a socio-ecological model of supported decision making. Future evaluations of supported decision making education should draw from both quantitative and qualitative approaches, with a focus on identifying the learning processes through which education influences supporter behaviour, organisational practices, and client/patient outcomes.
DOI: 10.6084/m9.figshare.25610482.v1
title: Domain-specific cognitive impairments, mood and quality of life 6 months after stroke

description: To identify which acute and 6-month domain-specific cognitive impairments impact mood, participation, and stroke-related quality of life 6 months post-stroke. A prospective cohort of 430 stroke survivors completed the Oxford Cognitive Screen (OCS) acutely and 6 months post-stroke. Participants completed the Stroke Impact Scale (SIS) and Hospital Depression and Anxiety Scale (HADS) at 6 months. Multivariable regression analyses assessed whether severity of, and domain-specific, cognitive impairment acutely and at 6 months was associated with composite 6-month SIS scores, each SIS subscale, and HADS scores. Increased severity of acute and 6-month cognitive impairment was associated with lower 6-month SIS composite scores independent of age, sex, education years, and stroke severity (both <i>p</i> &lt; 0.001). Domain-specific impairments in memory (<i>p</i> &lt; 0.001) and attention (<i>p</i> = 0.002) acutely, and language (<i>p</i> &lt; 0.001), memory (<i>p</i> = 0.001) and number processing (<i>p</i> = 0.006) at 6 months showed the strongest associations with worse SIS composite scores. Severity of acute and 6-month cognitive impairment was associated with poorer functioning in each SIS subscale, and greater levels of depression (acute <i>p</i> = 0.021, 6-months <i>p</i> &lt; 0.001), but not anxiety (<i>p</i> = 0.174, <i>p</i> = 0.129). Both acute and 6-month domain-specific cognitive impairments, particularly in memory, were found to negatively impact overall functional and mood outcomes 6 months post-stroke. At 6 months follow-up, stroke survivors reported the greatest challenges in participation and emotional well-being, suggesting that these specific areas may be worth prioritising.Healthcare professionals involved in post-stroke rehabilitation should prioritize assessing and addressing the severity of post-stroke cognitive impairment as it significantly influences functioning.Implementing targeted interventions particularly for memory deficits could be instrumental in improving overall functional and mood outcomes in stroke survivors. At 6 months follow-up, stroke survivors reported the greatest challenges in participation and emotional well-being, suggesting that these specific areas may be worth prioritising. Healthcare professionals involved in post-stroke rehabilitation should prioritize assessing and addressing the severity of post-stroke cognitive impairment as it significantly influences functioning. Implementing targeted interventions particularly for memory deficits could be instrumental in improving overall functional and mood outcomes in stroke survivors.
DOI: 10.6084/m9.figshare.25746528
title: Translation, cross-cultural adaptation, and psychometric properties of the Arabic version of the MedRisk instrument for measuring patient satisfaction with physical therapy care

description: This study aimed to translate, cross-culturally adapt, and validate the MedRisk Instrument for Measuring Patient Satisfaction with Physical Therapy Care into Arabic (MRPS-Ar). The 20-Item MRPS was translated and cross-culturally adapted into Arabic following international guidelines. Patients (<i>n</i> = 229) with musculoskeletal conditions who received physical therapy care completed the MRPS-Ar and global rating of change scale. Of these patients, 95 completed the MRPS-Ar twice. Factor structure, floor and ceiling effects, internal consistency, test-retest reliability, and construct validity of the MRPS-Ar were evaluated. Principal component analysis suggested 3-factor solution: a 7-item facility experience, 6-item therapeutic experience, and 3-item positive experience. The MRPS-Ar and its factors showed acceptable internal consistency (Cronbach’s alpha coefficients ranged from 0.819 to 0.936) and excellent test-retest reliability (ICCs ranged from 0.965 to 0.983). The global measures of satisfaction were significantly correlated with the global rating of change (Spearman’s rho = −0.678, <i>p</i> &lt; 0.001 for item “overall satisfaction” and Spearman’s rho = −0.690, <i>p</i> &lt; 0.001 for item “would return”). The 18-item MRPS-Ar displayed adequate psychometric properties for measuring patients’ satisfaction with physical therapy care. The MRPS-Ar is a reliable and valid instrument that can be used in medical, clinical, and research fields.
DOI: 10.6084/m9.figshare.25746528.v1
title: Translation, cross-cultural adaptation, and psychometric properties of the Arabic version of the MedRisk instrument for measuring patient satisfaction with physical therapy care

description: This study aimed to translate, cross-culturally adapt, and validate the MedRisk Instrument for Measuring Patient Satisfaction with Physical Therapy Care into Arabic (MRPS-Ar). The 20-Item MRPS was translated and cross-culturally adapted into Arabic following international guidelines. Patients (<i>n</i> = 229) with musculoskeletal conditions who received physical therapy care completed the MRPS-Ar and global rating of change scale. Of these patients, 95 completed the MRPS-Ar twice. Factor structure, floor and ceiling effects, internal consistency, test-retest reliability, and construct validity of the MRPS-Ar were evaluated. Principal component analysis suggested 3-factor solution: a 7-item facility experience, 6-item therapeutic experience, and 3-item positive experience. The MRPS-Ar and its factors showed acceptable internal consistency (Cronbach’s alpha coefficients ranged from 0.819 to 0.936) and excellent test-retest reliability (ICCs ranged from 0.965 to 0.983). The global measures of satisfaction were significantly correlated with the global rating of change (Spearman’s rho = −0.678, <i>p</i> &lt; 0.001 for item “overall satisfaction” and Spearman’s rho = −0.690, <i>p</i> &lt; 0.001 for item “would return”). The 18-item MRPS-Ar displayed adequate psychometric properties for measuring patients’ satisfaction with physical therapy care. The MRPS-Ar is a reliable and valid instrument that can be used in medical, clinical, and research fields.
DOI: 10.6084/m9.figshare.25610482
title: Domain-specific cognitive impairments, mood and quality of life 6 months after stroke

description: To identify which acute and 6-month domain-specific cognitive impairments impact mood, participation, and stroke-related quality of life 6 months post-stroke. A prospective cohort of 430 stroke survivors completed the Oxford Cognitive Screen (OCS) acutely and 6 months post-stroke. Participants completed the Stroke Impact Scale (SIS) and Hospital Depression and Anxiety Scale (HADS) at 6 months. Multivariable regression analyses assessed whether severity of, and domain-specific, cognitive impairment acutely and at 6 months was associated with composite 6-month SIS scores, each SIS subscale, and HADS scores. Increased severity of acute and 6-month cognitive impairment was associated with lower 6-month SIS composite scores independent of age, sex, education years, and stroke severity (both <i>p</i> &lt; 0.001). Domain-specific impairments in memory (<i>p</i> &lt; 0.001) and attention (<i>p</i> = 0.002) acutely, and language (<i>p</i> &lt; 0.001), memory (<i>p</i> = 0.001) and number processing (<i>p</i> = 0.006) at 6 months showed the strongest associations with worse SIS composite scores. Severity of acute and 6-month cognitive impairment was associated with poorer functioning in each SIS subscale, and greater levels of depression (acute <i>p</i> = 0.021, 6-months <i>p</i> &lt; 0.001), but not anxiety (<i>p</i> = 0.174, <i>p</i> = 0.129). Both acute and 6-month domain-specific cognitive impairments, particularly in memory, were found to negatively impact overall functional and mood outcomes 6 months post-stroke. At 6 months follow-up, stroke survivors reported the greatest challenges in participation and emotional well-being, suggesting that these specific areas may be worth prioritising.Healthcare professionals involved in post-stroke rehabilitation should prioritize assessing and addressing the severity of post-stroke cognitive impairment as it significantly influences functioning.Implementing targeted interventions particularly for memory deficits could be instrumental in improving overall functional and mood outcomes in stroke survivors. At 6 months follow-up, stroke survivors reported the greatest challenges in participation and emotional well-being, suggesting that these specific areas may be worth prioritising. Healthcare professionals involved in post-stroke rehabilitation should prioritize assessing and addressing the severity of post-stroke cognitive impairment as it significantly influences functioning. Implementing targeted interventions particularly for memory deficits could be instrumental in improving overall functional and mood outcomes in stroke survivors.
DOI: 10.6084/m9.figshare.25750314
title: A co-designed mixed methods study on community-based gym exercise for non-ambulant adults with childhood onset disability

description: Explore community-based gym exercise for non-ambulant adults with childhood-onset disability. Non-ambulant adults with childhood-onset disability participated in four, weekly gym sessions co-facilitated by physiotherapists and exercise professionals. Practicalities of participating in the sessions were recorded <i>via</i> uptake and attrition, weekly surveys, and focus groups. Perspectives of those who designed/delivered the study were gathered <i>via</i> weekly debrief meetings. Quantitative data were analysed descriptively, qualitative data were analysed thematically. Ten non-ambulant adults with childhood-onset disability participated; 70% completed all exercise sessions. Focus groups identified three themes. “I wouldn’t be able to exercise…there’s no option for a community-based setting” described the lack of opportunities for exercise in gyms. “You don’t realise the benefit of coming here” highlighted benefits of exercise. “We can do better” had two sub-themes: problem solving and ingredients for community-based gym exercise. Weekly feedback and debrief meetings identified practicalities related to equipment, exercises, and collaborative working between facilitators. Whilst there is an interest in community-based gym exercise for non-ambulant adults with childhood-onset disability, there remains a lack of inclusive gyms. Co-design of inclusive gym guidelines and condition-specific physical activity referral scheme may enhance opportunities for participation in gym exercise for adults with childhood-onset disability. Adults with non-ambulant childhood-onset disability want to access gyms to self-manage their condition.Accessible facilities and provision of dignified toileting would reduce the barriers to participation in community-based gym exercise for non-ambulant adults with childhood-onset disability.Specialist rehabilitation staff and support are necessary to facilitate participation in community-based gym exercise by non-ambulant adults with childhood-onset disability. Adults with non-ambulant childhood-onset disability want to access gyms to self-manage their condition. Accessible facilities and provision of dignified toileting would reduce the barriers to participation in community-based gym exercise for non-ambulant adults with childhood-onset disability. Specialist rehabilitation staff and support are necessary to facilitate participation in community-based gym exercise by non-ambulant adults with childhood-onset disability.
DOI: 10.6084/m9.figshare.25750314.v1
title: A co-designed mixed methods study on community-based gym exercise for non-ambulant adults with childhood onset disability

description: Explore community-based gym exercise for non-ambulant adults with childhood-onset disability. Non-ambulant adults with childhood-onset disability participated in four, weekly gym sessions co-facilitated by physiotherapists and exercise professionals. Practicalities of participating in the sessions were recorded <i>via</i> uptake and attrition, weekly surveys, and focus groups. Perspectives of those who designed/delivered the study were gathered <i>via</i> weekly debrief meetings. Quantitative data were analysed descriptively, qualitative data were analysed thematically. Ten non-ambulant adults with childhood-onset disability participated; 70% completed all exercise sessions. Focus groups identified three themes. “I wouldn’t be able to exercise…there’s no option for a community-based setting” described the lack of opportunities for exercise in gyms. “You don’t realise the benefit of coming here” highlighted benefits of exercise. “We can do better” had two sub-themes: problem solving and ingredients for community-based gym exercise. Weekly feedback and debrief meetings identified practicalities related to equipment, exercises, and collaborative working between facilitators. Whilst there is an interest in community-based gym exercise for non-ambulant adults with childhood-onset disability, there remains a lack of inclusive gyms. Co-design of inclusive gym guidelines and condition-specific physical activity referral scheme may enhance opportunities for participation in gym exercise for adults with childhood-onset disability. Adults with non-ambulant childhood-onset disability want to access gyms to self-manage their condition.Accessible facilities and provision of dignified toileting would reduce the barriers to participation in community-based gym exercise for non-ambulant adults with childhood-onset disability.Specialist rehabilitation staff and support are necessary to facilitate participation in community-based gym exercise by non-ambulant adults with childhood-onset disability. Adults with non-ambulant childhood-onset disability want to access gyms to self-manage their condition. Accessible facilities and provision of dignified toileting would reduce the barriers to participation in community-based gym exercise for non-ambulant adults with childhood-onset disability. Specialist rehabilitation staff and support are necessary to facilitate participation in community-based gym exercise by non-ambulant adults with childhood-onset disability.