cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.6084/m9.figshare.25562523.v1
title: “Stroke - 65 plus. Continued active life.” A randomized controlled trial of a self-management neurorehabilitation intervention for elderly people after stroke

description: Post-stroke sequelae among elderly often lead to a more inactive life while carrying a risk of overburdening close relatives. The objective of the present study was to determine if a novel self-management neuro-rehabilitation intervention added to usual treatment for people with stroke over the age of 65 years improved their self-efficacy. This randomised controlled trial included participants two weeks before discharge from subacute rehabilitation. All participants received usual treatment. The intervention entailed an add-on of six to eight self-management sessions lasting 45–60 min within a period of nine months after discharge. This novel neuro-rehabilitation intervention focused on promoting growth, development and self-efficacy by facilitating the participants’ self-management strategies regarding their activities and social network. All participants were assessed at baseline, three months and nine months after discharge. The primary outcome was self-efficacy measured by the Stroke Self-Efficacy Questionnaire. Sixty-nine individuals with stroke aged &gt; 65 years were randomised. Their mean(SD) age was 76(6) years; 32 (46%) were female. No significant difference was found between the groups at baseline. Improvement recorded in the intervention group did not significantly differ from that of the control group with regard to primary outcome or secondary outcomes. This novel self-management intervention had no significant effect measured by the primary outcome self-efficacy or quality of life. Furthermore, no impact was observed on participation and autonomy compared with usual treatment. Clinical trial registration—URL: ClinicalTrials.gov, NCT03183960. Registered on 12 June 2017. The present study testing a novel self-management neuro-rehabilitation intervention for people with stroke aged more than 65 years failed to improve self-efficacy, quality of life, and impact on participation and autonomy.Post hoc analyzes showed a lower caregiver burden at three and nine months in the intervention group as compared to the control group.The approach of perceiving the stroke individual and the informal caregiver as one unit (dyad), involving both in decisions regarding everyday activities and roles in everyday life especially within their shared part of life, appears important and warrants further development. The present study testing a novel self-management neuro-rehabilitation intervention for people with stroke aged more than 65 years failed to improve self-efficacy, quality of life, and impact on participation and autonomy. Post hoc analyzes showed a lower caregiver burden at three and nine months in the intervention group as compared to the control group. The approach of perceiving the stroke individual and the informal caregiver as one unit (dyad), involving both in decisions regarding everyday activities and roles in everyday life especially within their shared part of life, appears important and warrants further development.
DOI: 10.6084/m9.figshare.25562523
title: “Stroke - 65 plus. Continued active life.” A randomized controlled trial of a self-management neurorehabilitation intervention for elderly people after stroke

description: Post-stroke sequelae among elderly often lead to a more inactive life while carrying a risk of overburdening close relatives. The objective of the present study was to determine if a novel self-management neuro-rehabilitation intervention added to usual treatment for people with stroke over the age of 65 years improved their self-efficacy. This randomised controlled trial included participants two weeks before discharge from subacute rehabilitation. All participants received usual treatment. The intervention entailed an add-on of six to eight self-management sessions lasting 45–60 min within a period of nine months after discharge. This novel neuro-rehabilitation intervention focused on promoting growth, development and self-efficacy by facilitating the participants’ self-management strategies regarding their activities and social network. All participants were assessed at baseline, three months and nine months after discharge. The primary outcome was self-efficacy measured by the Stroke Self-Efficacy Questionnaire. Sixty-nine individuals with stroke aged &gt; 65 years were randomised. Their mean(SD) age was 76(6) years; 32 (46%) were female. No significant difference was found between the groups at baseline. Improvement recorded in the intervention group did not significantly differ from that of the control group with regard to primary outcome or secondary outcomes. This novel self-management intervention had no significant effect measured by the primary outcome self-efficacy or quality of life. Furthermore, no impact was observed on participation and autonomy compared with usual treatment. Clinical trial registration—URL: ClinicalTrials.gov, NCT03183960. Registered on 12 June 2017. The present study testing a novel self-management neuro-rehabilitation intervention for people with stroke aged more than 65 years failed to improve self-efficacy, quality of life, and impact on participation and autonomy.Post hoc analyzes showed a lower caregiver burden at three and nine months in the intervention group as compared to the control group.The approach of perceiving the stroke individual and the informal caregiver as one unit (dyad), involving both in decisions regarding everyday activities and roles in everyday life especially within their shared part of life, appears important and warrants further development. The present study testing a novel self-management neuro-rehabilitation intervention for people with stroke aged more than 65 years failed to improve self-efficacy, quality of life, and impact on participation and autonomy. Post hoc analyzes showed a lower caregiver burden at three and nine months in the intervention group as compared to the control group. The approach of perceiving the stroke individual and the informal caregiver as one unit (dyad), involving both in decisions regarding everyday activities and roles in everyday life especially within their shared part of life, appears important and warrants further development.
DOI: 10.6084/m9.figshare.25507114
title: What are the experiences of people with motor and sensory functional neurological disorder? A systematic review and thematic synthesis of qualitative studies

description: Functional neurological disorders are common, highly stigmatised and associated with significant disability. This review aimed to synthesise qualitative research exploring the experiences of people living with motor and/or sensory FND. Identifying their needs should inform service development, education for healthcare professionals and generate future research questions. Five databases were systematically searched (Medline, PsychInfo, Web of Science, Embase and Cinahl) in November 2022, updated in June 2023. Data from included papers was extracted by two authors and studies were critically appraised using the Critical Appraisal Skills Programme (CASP). Data was thematically analysed and synthesised. 12 papers were included in the synthesis describing the views of 156 people with FND. The overarching theme was uncertainty; about what caused FND and how to live with it. Uncertainty was underpinned by four analytic themes; challenging healthcare interactions, loss of power and control, who or what is responsible and living with a visible disability and an invisible illness. Early and clear diagnosis, validation and support for living with FND should form part of multidisciplinary care. Co-produced service development, research agendas and education for clinicians, patients and the public would reduce stigma and improve the experiences of people with FND. A clear diagnosis and explanation of motor and/or sensory functional neurological disorder is validating and an important first step in recovery.People with motor and/or sensory functional neurological disorder experience significant disability, stigma, self-blame and functional impairment.Multidisciplinary care pathways for functional neurological disorder urgently need to be developed.There is a need for co-produced education and training for healthcare professionals which covers how to deliver diagnoses and personalised formulations, communicate concepts of applied neuroscience and challenges stigma and discrimination. A clear diagnosis and explanation of motor and/or sensory functional neurological disorder is validating and an important first step in recovery. People with motor and/or sensory functional neurological disorder experience significant disability, stigma, self-blame and functional impairment. Multidisciplinary care pathways for functional neurological disorder urgently need to be developed. There is a need for co-produced education and training for healthcare professionals which covers how to deliver diagnoses and personalised formulations, communicate concepts of applied neuroscience and challenges stigma and discrimination.
DOI: 10.6084/m9.figshare.25507114.v1
title: What are the experiences of people with motor and sensory functional neurological disorder? A systematic review and thematic synthesis of qualitative studies

description: Functional neurological disorders are common, highly stigmatised and associated with significant disability. This review aimed to synthesise qualitative research exploring the experiences of people living with motor and/or sensory FND. Identifying their needs should inform service development, education for healthcare professionals and generate future research questions. Five databases were systematically searched (Medline, PsychInfo, Web of Science, Embase and Cinahl) in November 2022, updated in June 2023. Data from included papers was extracted by two authors and studies were critically appraised using the Critical Appraisal Skills Programme (CASP). Data was thematically analysed and synthesised. 12 papers were included in the synthesis describing the views of 156 people with FND. The overarching theme was uncertainty; about what caused FND and how to live with it. Uncertainty was underpinned by four analytic themes; challenging healthcare interactions, loss of power and control, who or what is responsible and living with a visible disability and an invisible illness. Early and clear diagnosis, validation and support for living with FND should form part of multidisciplinary care. Co-produced service development, research agendas and education for clinicians, patients and the public would reduce stigma and improve the experiences of people with FND. A clear diagnosis and explanation of motor and/or sensory functional neurological disorder is validating and an important first step in recovery.People with motor and/or sensory functional neurological disorder experience significant disability, stigma, self-blame and functional impairment.Multidisciplinary care pathways for functional neurological disorder urgently need to be developed.There is a need for co-produced education and training for healthcare professionals which covers how to deliver diagnoses and personalised formulations, communicate concepts of applied neuroscience and challenges stigma and discrimination. A clear diagnosis and explanation of motor and/or sensory functional neurological disorder is validating and an important first step in recovery. People with motor and/or sensory functional neurological disorder experience significant disability, stigma, self-blame and functional impairment. Multidisciplinary care pathways for functional neurological disorder urgently need to be developed. There is a need for co-produced education and training for healthcare professionals which covers how to deliver diagnoses and personalised formulations, communicate concepts of applied neuroscience and challenges stigma and discrimination.
DOI: 10.6084/m9.figshare.25565634
title: Effects of home-based exercise on the health of patients with fibromyalgia syndrome: a systematic review of randomized clinical trials

description: Analyze the effects of interventions with home-based physical exercise on the health of patients with fibromyalgia and the characteristics of the protocols used. This systematic review was registered at PROSPERO and followed the PRISMA recommendations. Searches were performed in six electronic databases. Eligibility criteria for the selection of studies were compiled using the acronym PICOS. Data were extracted and checked in a Microsoft Excel® spreadsheet and the risk of bias was assessed using the Rob 2 tool. The search resulted in seven studies included for analysis. Among them, the most common modality was aerobic exercise. The analyzed outcomes were: pain, quality of life, depression, anxiety, disease severity, physical function, pain catastrophizing, self-efficacy, psychological well-being, sleep quality and somatosensory and temporal discrimination. The effects of home-based exercise are limited, and improvements in pain and quality of life was found. For the other outcomes, the results were inconclusive. Most studies presented some concerns about the risk of bias. It is necessary to expand the evidence on home-based exercises for fibromyalgia, as this is the first systematic review on the subject. Subsequent research should focus on methodological rigor and protocol detail, allowing findings to be replicated. Home-based physical exercise can improve pain and quality of life in patients with fibromyalgia.Among the modalities, combinations of aerobic exercise, resistance training and stretching are recommended.The weekly frequency should be two or three times, with an average duration of 40 minutes.Programs from four weeks onwards may already show improvement in symptoms, but the practice should be maintained in the long term. Home-based physical exercise can improve pain and quality of life in patients with fibromyalgia. Among the modalities, combinations of aerobic exercise, resistance training and stretching are recommended. The weekly frequency should be two or three times, with an average duration of 40 minutes. Programs from four weeks onwards may already show improvement in symptoms, but the practice should be maintained in the long term.
DOI: 10.6084/m9.figshare.25565634.v1
title: Effects of home-based exercise on the health of patients with fibromyalgia syndrome: a systematic review of randomized clinical trials

description: Analyze the effects of interventions with home-based physical exercise on the health of patients with fibromyalgia and the characteristics of the protocols used. This systematic review was registered at PROSPERO and followed the PRISMA recommendations. Searches were performed in six electronic databases. Eligibility criteria for the selection of studies were compiled using the acronym PICOS. Data were extracted and checked in a Microsoft Excel® spreadsheet and the risk of bias was assessed using the Rob 2 tool. The search resulted in seven studies included for analysis. Among them, the most common modality was aerobic exercise. The analyzed outcomes were: pain, quality of life, depression, anxiety, disease severity, physical function, pain catastrophizing, self-efficacy, psychological well-being, sleep quality and somatosensory and temporal discrimination. The effects of home-based exercise are limited, and improvements in pain and quality of life was found. For the other outcomes, the results were inconclusive. Most studies presented some concerns about the risk of bias. It is necessary to expand the evidence on home-based exercises for fibromyalgia, as this is the first systematic review on the subject. Subsequent research should focus on methodological rigor and protocol detail, allowing findings to be replicated. Home-based physical exercise can improve pain and quality of life in patients with fibromyalgia.Among the modalities, combinations of aerobic exercise, resistance training and stretching are recommended.The weekly frequency should be two or three times, with an average duration of 40 minutes.Programs from four weeks onwards may already show improvement in symptoms, but the practice should be maintained in the long term. Home-based physical exercise can improve pain and quality of life in patients with fibromyalgia. Among the modalities, combinations of aerobic exercise, resistance training and stretching are recommended. The weekly frequency should be two or three times, with an average duration of 40 minutes. Programs from four weeks onwards may already show improvement in symptoms, but the practice should be maintained in the long term.
DOI: 10.6084/m9.figshare.28094822
title: The Patient Global Impression of Change as a complementary tool to account for neurobehavioral and mental health symptom improvement for patients with concussion

description: The purpose of this study was to determine the extent to which patient’s perspective of symptom improvement, as indexed by the Patient Global Impression of Change (PGIC) survey, is associated with symptom improvement on common measures of neurobehavioral and mental health symptoms following concussion. Data were from 449 US active duty service members receiving treatment in interdisciplinary programs for their concussion. PGIC rating (range = 1–7) was evaluated for compatibility in assessing improvement in or clinically-elevated neurobehavioral (using Neurobehavioral Symptom Inventory [NSI]) and mental health (using Post-traumatic Stress Disorder Checklist, DSM-5 [PCL-5] and Patient Health Questionnaire [PHQ-8]) symptoms. Higher PGIC scores were related to a higher prevalence of clinically-relevant <i>decrease</i> in NSI, PCL-5 or PHQ-8 scores. Participants with a PGIC rating of 3+ (vs.&lt;3) were about 2.2 (CI = 1.4–3.5), 1.6 (CI = 1.1–1.3), and 2.7 (CI = 1.4–5.1) times more likely to report clinically-relevant <i>decrease</i> in NSI, PCL-5 and PHQ-8 symptoms, respectively. PGIC may help providers incorporate patients’ perspectives on symptom improvement achieved during rehabilitation. An approach combining PGIC with surveys such as NSI, PCL-5 and PHQ-8 may provide a more comprehensive understanding of symptom improvement and realistic view of expectations for what would be deemed recovery to pre-injury symptom levels. Concussion significantly impacts cognitive, physical and mental health, and active duty service members (SMs) are at high risk due to their occupation demands.The Patient Global Impression of Change (PGIC) assesses symptom improvement, as perceived by the patient, which may align better with usual/pre-injury level symptoms prior to injury compared to other common measures of neurobehavioral and mental health symptoms for concussion patients.A comprehensive approach in which PGIC is included in symptom assessment may provide a better understanding of symptom improvement and provide a more realistic view of expectations for what would be deemed recovery to usual/pre-injury level or improvement in symptoms. Concussion significantly impacts cognitive, physical and mental health, and active duty service members (SMs) are at high risk due to their occupation demands. The Patient Global Impression of Change (PGIC) assesses symptom improvement, as perceived by the patient, which may align better with usual/pre-injury level symptoms prior to injury compared to other common measures of neurobehavioral and mental health symptoms for concussion patients. A comprehensive approach in which PGIC is included in symptom assessment may provide a better understanding of symptom improvement and provide a more realistic view of expectations for what would be deemed recovery to usual/pre-injury level or improvement in symptoms.
DOI: 10.6084/m9.figshare.28094822.v1
title: The Patient Global Impression of Change as a complementary tool to account for neurobehavioral and mental health symptom improvement for patients with concussion

description: The purpose of this study was to determine the extent to which patient’s perspective of symptom improvement, as indexed by the Patient Global Impression of Change (PGIC) survey, is associated with symptom improvement on common measures of neurobehavioral and mental health symptoms following concussion. Data were from 449 US active duty service members receiving treatment in interdisciplinary programs for their concussion. PGIC rating (range = 1–7) was evaluated for compatibility in assessing improvement in or clinically-elevated neurobehavioral (using Neurobehavioral Symptom Inventory [NSI]) and mental health (using Post-traumatic Stress Disorder Checklist, DSM-5 [PCL-5] and Patient Health Questionnaire [PHQ-8]) symptoms. Higher PGIC scores were related to a higher prevalence of clinically-relevant <i>decrease</i> in NSI, PCL-5 or PHQ-8 scores. Participants with a PGIC rating of 3+ (vs.&lt;3) were about 2.2 (CI = 1.4–3.5), 1.6 (CI = 1.1–1.3), and 2.7 (CI = 1.4–5.1) times more likely to report clinically-relevant <i>decrease</i> in NSI, PCL-5 and PHQ-8 symptoms, respectively. PGIC may help providers incorporate patients’ perspectives on symptom improvement achieved during rehabilitation. An approach combining PGIC with surveys such as NSI, PCL-5 and PHQ-8 may provide a more comprehensive understanding of symptom improvement and realistic view of expectations for what would be deemed recovery to pre-injury symptom levels. Concussion significantly impacts cognitive, physical and mental health, and active duty service members (SMs) are at high risk due to their occupation demands.The Patient Global Impression of Change (PGIC) assesses symptom improvement, as perceived by the patient, which may align better with usual/pre-injury level symptoms prior to injury compared to other common measures of neurobehavioral and mental health symptoms for concussion patients.A comprehensive approach in which PGIC is included in symptom assessment may provide a better understanding of symptom improvement and provide a more realistic view of expectations for what would be deemed recovery to usual/pre-injury level or improvement in symptoms. Concussion significantly impacts cognitive, physical and mental health, and active duty service members (SMs) are at high risk due to their occupation demands. The Patient Global Impression of Change (PGIC) assesses symptom improvement, as perceived by the patient, which may align better with usual/pre-injury level symptoms prior to injury compared to other common measures of neurobehavioral and mental health symptoms for concussion patients. A comprehensive approach in which PGIC is included in symptom assessment may provide a better understanding of symptom improvement and provide a more realistic view of expectations for what would be deemed recovery to usual/pre-injury level or improvement in symptoms.
DOI: 10.15468/dl.cfn58u
title: Occurrence Download

description: A dataset containing 5 species occurrences available in GBIF matching the query:
{
 "TaxonKey" : [
 "is Oedisiphum soureni Basu, 1964"
 ]
}

 The dataset includes 5 records from 1 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0049208-241126133413365/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.
DOI: 10.15468/dl.3x8za8
title: Occurrence Download

description: A dataset containing 1238 species occurrences available in GBIF matching the query:
{
 "and" : [
 "DatasetKey is Inventario Español de Especies Terrestres (MAGRAMA)",
 "Geometry POLYGON((-5.92421 38.19073,-5.32958 38.06636,-5.41894 38.47114,-5.81765 38.47922,-5.92421 38.19073))",
 "HasGeospatialIssue is false",
 "OccurrenceStatus is Present",
 "TaxonKey is Animalia"
 ]
}

 The dataset includes 1238 records from 1 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0049210-241126133413365/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.