AMRC open research最新文献

{"title":"Creating connections: developing an online space for cross-regional mentorship and network building in the dementia research field.","authors":"Josie Fullerton,&nbsp;Conceicao Bettencourt,&nbsp;Michael Daniels,&nbsp;Fiona Mclean,&nbsp;Susan Simpson,&nbsp;Adam Smith,&nbsp;Nathan Woodling,&nbsp;Fiona Kerr","doi":"10.12688/amrcopenres.13091.2","DOIUrl":"https://doi.org/10.12688/amrcopenres.13091.2","url":null,"abstract":"<p><strong>Background: </strong>Effective development and retention of talented early-career researchers (ECRs) is essential to the continued success of biomedical science research fields. To this end, formal mentorship programmes (where researchers are paired with one or more mentors beyond their direct manager) have proven to be successful in providing support and expanding career development opportunities. However, many programmes are limited to pools of mentors and mentees within one institute or geographical area, highlighting that cross-regional connections may be a missed opportunity in many mentorship schemes.</p><p><strong>Methods: </strong>Here, we aimed to address this limitation through our pilot cross-regional mentorship scheme, creating reciprocal mentor-mentee pairings between two pre-established networks of Alzheimer's Research UK (ARUK) Network-associated researchers. We carefully created 21 mentor-mentee pairings between the Scotland and University College London (UCL) networks in 2021, with surveys conducted to assess mentor/mentee satisfaction with the programme.</p><p><strong>Results: </strong>Participants reported very high satisfaction with the nature of the pairings and the mentors' contribution to the career development of mentees; a majority also reported that the mentorship scheme increased their connections outside of their home network. Our assessment of this pilot programme is that it supports the utility of cross-regional mentorship schemes for ECR development. At the same time, we highlight the limitations of our programme and recommend areas for improvement in future programmes, including greater consideration of support for minoritized groups and the need for additional training for mentors.</p><p><strong>Conclusions: </strong>In conclusion, our pilot scheme generated successful and novel mentor-mentee pairings across pre-existing networks; both of which reported high satisfaction with pairings, ECR career and personal development, and the formation of new cross-network connections. This pilot may serve as a model for other networks of biomedical researchers, where existing networks within medical research charities can act as a scaffold to build new cross-regional career development opportunities for researchers.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7614661/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10042329","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved].","authors":"Rachel L Chambers, Sophie Pask, Irene J Higginson, Stephen Barclay, Fliss E M Murtagh, Katherine E Sleeman","doi":"10.12688/amrcopenres.13079.2","DOIUrl":"10.12688/amrcopenres.13079.2","url":null,"abstract":"<p><strong>Background: </strong>In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this.</p><p><strong>Methods: </strong>Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care.</p><p><strong>Results: </strong>23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete.</p><p><strong>Conclusions: </strong>Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7614372/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9573577","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The impact of Covid-19 pandemic on hospices: A systematic integrated review and synthesis of recommendations for policy and practice.","authors":"Shalene van Langen-Datta, Helen Wesson, Joanna Fleming, Abi Eccles, Catherine Grimley, Jeremy Dale, Kathryn Almack, Catriona Mayland, Sarah Mitchell, Ruth Driscoll, Lynn Tatnell, Lesley Roberts, John I MacArtney","doi":"10.12688/amrcopenres.13105.1","DOIUrl":"10.12688/amrcopenres.13105.1","url":null,"abstract":"<p><strong>Background: </strong>The Covid-19 pandemic resulted in the development of numerous recommendations for practice and policy for specialist palliative care provided by hospices in United Kingdom (UK), as hospices were significantly affected by the pandemic and protections put in place.The aim of this review is to identify and synthesise recommendations or implications for policy and practice that have been generated for adult hospice specialist palliative care during the first 24 months of the Covid-19 pandemic.</p><p><strong>Methods: </strong>AMED, BNI, CINAHL, EMBASE, EMCARE, HMIC, Medline, PsycINFO, PubMed databases were searched for peer-reviewed papers, as well as hand searchers for grey literature. Literature relating to hospices and Covid-19 in the UK were included and a thematic synthesis of recommendations for hospice policy and practice was undertaken.</p><p><strong>Results: </strong>858 articles were identified with 12 meeting the inclusion criteria. Fifty-eight recommendations or implications were identified: 31 for policy, 27 for practice, and 10 covering both. Recommendations were organised under ten themes. There were several recommendations seeking to secure hospice resources to mitigate the short-term impact of the pandemic, as well as those focused on longer-term implications such as core funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services.</p><p><strong>Conclusion: </strong>The Covid-19 pandemic and protections exposed several ongoing policy and practice needs, especially around hospice resources, while generating novel issues for hospices to address. Significant policy gaps remain to be addressed to mitigate the impact of the pandemic on the quality of hospice specialist palliative care.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-10-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11064931/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48603565","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved]","authors":"R. Chambers, S. Pask, Irene J. Higginson, S. Barclay, F. Murtagh, K. Sleeman","doi":"10.12688/amrcopenres.13079.1","DOIUrl":"https://doi.org/10.12688/amrcopenres.13079.1","url":null,"abstract":"Background In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this. Methods Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care. Results 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete. Conclusions Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact.","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-08-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44781679","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The dementia research career pipeline: Gender disparities in publication authorships and grant funding outcomes at different career stages.","authors":"Melina Andreou, Narshil Choi, Jorge Gómez Magenti, Susan Kohlhaas, Rosa Sancho","doi":"10.12688/amrcopenres.13072.1","DOIUrl":"10.12688/amrcopenres.13072.1","url":null,"abstract":"<p><strong>Background: </strong>Multiple studies have analysed gender disparities in academic research. Here we study the gender composition of the dementia research field at different stages in the career pipeline.</p><p><strong>Methods: </strong>We use various data sources to gain insights about the gender ratio across career stages: conference attendance data as a proxy for the field as a whole; bibliometric data to know who publishes, and who occupies positions of seniority among the listed authors; and Alzheimer's Research UK's (ARUK) internal grant funding data to understand who obtains funding. We also analyse the scoring of grant applications based on the gender of the reviewers.</p><p><strong>Results: </strong>Our results confirm that female researchers leave dementia academic research at higher rates than men, before transitioning into senior positions. In 2020, they comprised over 60% of the field, produced 54% of first authorships, but only accounted for 38% of last authorships. Overall, women received 37% of ARUK's competitive grants, with significant differences between grant schemes awarded for early career researchers (64% female awardees) compared to grant schemes aimed at senior researchers (33% female awardees). Men and women applied for and obtained grants at significantly different rates depending on the career stage at which the grant was aimed.Finally, we also observed that male and female reviewers apply evaluation criteria differently, with men giving better scores than women on average.</p><p><strong>Conclusions: </strong>Our study adds to the evidence that shows that women get published less, receive less funding, and transition into senior academic positions at disproportionally lower rates than men do. We briefly discuss potential reasons why gender disparities arise as researchers progress into senior positions, and offer interventions ARUK can implement in its application and evaluation process to address those disparities.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-08-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11064979/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48260145","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Research Evaluating Staff Training Online for Resilience (RESTORE):  Protocol for a single-arm feasibility study of an online Acceptance and Commitment Therapy intervention to improve staff wellbeing in palliative care settings.","authors":"Anne Finucane, Nicholas J Hulbert-Williams, Brooke Swash, Juliet A Spiller, Brigid Lydon, David Gillanders","doi":"10.12688/amrcopenres.13035.2","DOIUrl":"https://doi.org/10.12688/amrcopenres.13035.2","url":null,"abstract":"<p><strong>Background: </strong>Palliative care staff commonly experience workplace stress and distress. General stressors include unmanageable workloads and staff shortages. Stressors specific to palliative care include regular exposure to death, loss and grief. The COVID-19 pandemic exacerbated exhaustion and burnout across the healthcare system, including for those providing palliative care. Evidence based psychological support interventions, tailored to the needs and context of palliative care staff, are needed. Acceptance and Commitment Therapy (ACT) is an established form of cognitive behavioural therapy which uses behavioural psychology, values, acceptance, and mindfulness techniques to improve mental health and wellbeing. ACT is effective in improving workplace wellbeing in many occupational settings. Our study examines the acceptability and feasibility of an online ACT-based intervention to improve mental health and wellbeing in staff caring for people with an advanced progressive illness.</p><p><strong>Methods: </strong>We plan a single-arm feasibility trial. We will seek to recruit 30 participants to take part in an 8- week online ACT-based intervention, consisting of three synchronous facilitated group sessions and five asynchronous self-directed learning modules. We will use convergent mixed methods to evaluate the feasibility of the intervention. Quantitative feasibility outcomes will include participant recruitment and retention rates, alongside completion rates of measures assessing stress, quality of life, wellbeing, and psychological flexibility. Focus groups and interviews will explore participant perspectives on the intervention. We will run a stakeholder workshop to further refine the intervention and identify outcomes for use in a future evaluation.</p><p><strong>Results: </strong>We will describe participant perspectives on intervention acceptability, format, content, and perceived impact, alongside rates of intervention recruitment, retention, and outcome measure completion.</p><p><strong>Conclusion: </strong>We will show whether a brief, online ACT intervention is acceptable to, and feasible for palliative care staff. Findings will be used to further refine the intervention and provide essential information on outcome assessment prior to a full-scale evaluation.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-06-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11064981/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140855873","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A feasibility pilot study of the effects of neurostimulation on swallowing function in Parkinson's Disease [version 2; peer review: 1 approved, 3 approved with reservations, 1 not approved].","authors":"Ayodele Sasegbon, Ulrike Hammerbeck, Emilia Michou, Ivy Cheng, Mengqing Zhang, Charlotte James, Shaheen Hamdy","doi":"10.12688/amrcopenres.13007.2","DOIUrl":"10.12688/amrcopenres.13007.2","url":null,"abstract":"<p><strong>Introduction: </strong>Dysphagia often occurs during Parkinson's disease (PD) and can have severe consequences. Recently, neuromodulatory techniques have been used to treat neurogenic dysphagia. Here we aimed to compare the neurophysiological and swallowing effects of three different types of neurostimulation, 5 Hertz (Hz) repetitive transcranial magnetic stimulation (rTMS), 1 Hz rTMS and pharyngeal electrical stimulation (PES) in patients with PD.</p><p><strong>Method: </strong>12 PD patients with dysphagia were randomised to receive either 5 Hz rTMS, 1 Hz rTMS, or PES. In a cross-over design, patients were assigned to one intervention and received both real and sham stimulation. Patients received a baseline videofluoroscopic (VFS) assessment of their swallowing, enabling penetration aspiration scores (PAS) to be calculated for: thin fluids, paste, solids and cup drinking. Swallowing timing measurements were also performed on thin fluid swallows only. They then had baseline recordings of motor evoked potentials (MEPs) from both pharyngeal and (as a control) abductor pollicis brevis (APB) cortical areas using single-pulse TMS. Subsequently, the intervention was administered and post interventional TMS recordings were taken at 0 and 30 minutes followed by a repeat VFS within 60 minutes of intervention.</p><p><strong>Results: </strong>All interventions were well tolerated. Due to lower than expected recruitment, statistical analysis of the data was not undertaken. However, with respect to PAS swallowing timings and MEP amplitudes, there was small but visible difference in the outcomes between active and sham.</p><p><strong>Conclusion: </strong>PES, 5 Hz rTMS and 1 Hz rTMS are tolerable interventions in PD related dysphagia. Due to small patient numbers no definitive conclusions could be drawn from the data with respect to individual interventions improving swallowing function and comparative effectiveness between interventions. Larger future studies are needed to further explore the efficacy of these neuromodulatory treatments in Parkinson's Disease associated dysphagia.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7612876/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40105230","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Population attributable risk for colorectal and breast cancer in England, Wales, Scotland, Northern Ireland, and the United Kingdom.","authors":"Shatabdi Goon, Hanseul Kim, Edward L Giovannucci","doi":"10.12688/amrcopenres.12980.2","DOIUrl":"https://doi.org/10.12688/amrcopenres.12980.2","url":null,"abstract":"<p><strong>Background: </strong>The population attributable risk (PAR) is a statistic commonly used for quantifying preventability of cancer. We report here PAR estimates for the United Kingdom (UK) along with its constituent countries for up-to-date risk factor-attributable colorectal cancer (CRC) and breast cancer (BC), focusing on diet and nutrition related factors and tobacco (CRC) using representative national surveys.</p><p><strong>Methods: </strong>The PAR was calculated using established, modifiable risk factors by the World Cancer Research Fund/American Institute of Cancer Research (WCRF/AICR): physical activity, body mass index (BMI), alcoholic drinks, red meat, processed meat, dietary fiber, dietary calcium, as well as cigarette smoking for CRC, and physical activity, BMI, alcoholic drinks, and fruits and vegetable consumption for BC. National prevalence estimates and relative risks (RRs) for CRC and BC were obtained from meta-analyses or large pooled analyses.</p><p><strong>Results: </strong>Based on eight dietary and lifestyle risk factors, the estimates for attributable cases of CRC for males and females, respectively, were as follows: England: 67% and 60%; Scotland: 68% and 59%, Wales: 66% and 61%; Northern Ireland: 67% and 61%; and UK: 67% and 60%. Excluding smoking, the PAR for the UK was 61% for men and 52% for women. Based on four dietary and lifestyle risk factors, the estimates for BC were as follows: England: 26%, Scotland: 27%; Wales: 25%; Northern Ireland: 26%; and UK: 27%.</p><p><strong>Conclusion: </strong>Up to 67% for CRC and 27% of BC were attributable to modifiable dietary and lifestyle factors in the UK. Moderate differences in PAR are observed between countries due to different prevalence of exposure to risk factors.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11064977/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140862037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Measuring quality of life in autistic adults: the reliability and validity of the Brief Version of the World Health Organization Quality of Life scale","authors":"David Mason, J. Rodgers, Deborah Garland, Colin Wilson, J. Parr, H. McConachie","doi":"10.12688/amrcopenres.13030.1","DOIUrl":"https://doi.org/10.12688/amrcopenres.13030.1","url":null,"abstract":"Background: Measurement of the Quality of Life (QoL) of autistic adults is receiving increasing empirical attention. The World Health Organisation (WHO) QoL measure (WHOQoL-BREF) has been utilised in several studies. Autistic adults report significantly lower QoL compared to neurotypical adults across several domains. However, no studies have investigated the suitability of WHOQoL-BREF as a tool to measure the QoL of autistic adults. Methods: This study explored the validity and reliability of WHOQoL-BREF with a mixed methods approach. Quantitatively, structural validity was explored by an exploratory factor analysis of WHOQoL-BREF data from 352 autistic adults aged 18-80 years. Qualitatively, four discussion groups (n=20 autistic people) were conducted to explore the face validity of the items of WHOQoL-BREF. Results: The five factor structure was conceptually similar to the WHO formulation of QoL, with adequate to good internal consistency of domains; however, some items loaded in an unexpected way. The reasons for these unexpected loadings were explored in the transcripts from the discussion groups. Conclusions: The findings suggest that the WHOQoL-BREF has acceptable validity and reliability for use with autistic adults; however caution is needed when interpreting data from the social domain and some other items","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47092686","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study.","authors":"Anja Lowit, Julie Greenfield, Emily Cutting, Ruby Wallis, Marios Hadjivassiliou","doi":"10.12688/amrcopenres.13036.1","DOIUrl":"10.12688/amrcopenres.13036.1","url":null,"abstract":"<p><strong>Background: </strong>Progressive ataxias are complex disorders that result in a wide variety of symptoms. Whilst we currently have a relatively good understanding of the symptom patterns associated with the various types of ataxia, and how these diseases progress over time, their impact on the person with ataxia is less well understood. In addition, little is known about how carers, friends and families are affected by them. This paper aims to provide preliminary information on the presence and impact of medical symptoms and day-to-day challenges on people with ataxia and their friends and relatives.</p><p><strong>Method: </strong>Data were extracted from a survey by Ataxia UK for their members. The views of 366 people with ataxia and 52 friends and relatives are reported. Data were analysed for the entire groups, as well as for the three most common ataxia types represented in the sample, Friedreich's ataxia, inherited ataxia (excluding Friedreich's ataxia), and cerebellar ataxia of unknown cause.</p><p><strong>Results: </strong>The survey confirmed the symptom patterns described in previous research, but further showed that the impact of these symptoms can vary across ataxia populations. Similar findings were observed for day-to-day challenges. Friends and relatives experienced similar challenges to people with ataxia, indicating that support provided has to consider those supporting people with ataxia as well as the patient. Respondents also highlighted limitations in terms of accessing support services, and not all services were able to cater fully to their specific needs.</p><p><strong>Conclusion: </strong>This study begins to provide information that can be used in further research to explore the needs of people with ataxia and their carers, friends, and relatives. Such research will support treatment trial design, ensuring patients' needs are considered, help to tailor support services to their needs, and ensure health care professionals have the necessary skills to fully address them.</p>","PeriodicalId":72183,"journal":{"name":"AMRC open research","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2021-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11064976/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42256423","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}