Matches in SemOpenAlex for { <https://semopenalex.org/work/W3217385597> ?p ?o ?g. }
Showing items 1 to 78 of
78
with 100 items per page.
- W3217385597 endingPage "28" @default.
- W3217385597 startingPage "28" @default.
- W3217385597 abstract "<ns4:p><ns4:bold>Background: </ns4:bold>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.</ns4:p><ns4:p> <ns4:bold>Method: </ns4:bold>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.</ns4:p><ns4:p> <ns4:bold>Results: </ns4:bold>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.</ns4:p><ns4:p> <ns4:bold>Conclusion: </ns4:bold>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.</ns4:p>" @default.
- W3217385597 created "2021-12-06" @default.
- W3217385597 creator A5014167104 @default.
- W3217385597 creator A5033748183 @default.
- W3217385597 creator A5044942924 @default.
- W3217385597 creator A5051686313 @default.
- W3217385597 creator A5061871754 @default.
- W3217385597 date "2021-11-30" @default.
- W3217385597 modified "2023-10-14" @default.
- W3217385597 title "Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study" @default.
- W3217385597 cites W1846386722 @default.
- W3217385597 cites W1994903929 @default.
- W3217385597 cites W1995174837 @default.
- W3217385597 cites W1995962173 @default.
- W3217385597 cites W2001500679 @default.
- W3217385597 cites W2025833673 @default.
- W3217385597 cites W2032267706 @default.
- W3217385597 cites W2046168902 @default.
- W3217385597 cites W2061134664 @default.
- W3217385597 cites W2064028461 @default.
- W3217385597 cites W2105981311 @default.
- W3217385597 cites W2106020848 @default.
- W3217385597 cites W2109967407 @default.
- W3217385597 cites W2125766898 @default.
- W3217385597 cites W2150141203 @default.
- W3217385597 cites W2155145445 @default.
- W3217385597 cites W2473974142 @default.
- W3217385597 cites W2562266410 @default.
- W3217385597 cites W2810599974 @default.
- W3217385597 cites W2976049852 @default.
- W3217385597 cites W2998689656 @default.
- W3217385597 cites W3137052596 @default.
- W3217385597 cites W3166374563 @default.
- W3217385597 doi "https://doi.org/10.12688/amrcopenres.13036.1" @default.
- W3217385597 hasPublicationYear "2021" @default.
- W3217385597 type Work @default.
- W3217385597 sameAs 3217385597 @default.
- W3217385597 citedByCount "2" @default.
- W3217385597 countsByYear W32173855972022 @default.
- W3217385597 crossrefType "journal-article" @default.
- W3217385597 hasAuthorship W3217385597A5014167104 @default.
- W3217385597 hasAuthorship W3217385597A5033748183 @default.
- W3217385597 hasAuthorship W3217385597A5044942924 @default.
- W3217385597 hasAuthorship W3217385597A5051686313 @default.
- W3217385597 hasAuthorship W3217385597A5061871754 @default.
- W3217385597 hasBestOaLocation W32173855972 @default.
- W3217385597 hasConcept C118552586 @default.
- W3217385597 hasConcept C15744967 @default.
- W3217385597 hasConcept C2780906641 @default.
- W3217385597 hasConcept C71924100 @default.
- W3217385597 hasConcept C74909509 @default.
- W3217385597 hasConceptScore W3217385597C118552586 @default.
- W3217385597 hasConceptScore W3217385597C15744967 @default.
- W3217385597 hasConceptScore W3217385597C2780906641 @default.
- W3217385597 hasConceptScore W3217385597C71924100 @default.
- W3217385597 hasConceptScore W3217385597C74909509 @default.
- W3217385597 hasFunder F4320320050 @default.
- W3217385597 hasLocation W32173855971 @default.
- W3217385597 hasLocation W32173855972 @default.
- W3217385597 hasOpenAccess W3217385597 @default.
- W3217385597 hasPrimaryLocation W32173855971 @default.
- W3217385597 hasRelatedWork W1506200166 @default.
- W3217385597 hasRelatedWork W1995515455 @default.
- W3217385597 hasRelatedWork W2037831730 @default.
- W3217385597 hasRelatedWork W2039318446 @default.
- W3217385597 hasRelatedWork W2048182022 @default.
- W3217385597 hasRelatedWork W2080531066 @default.
- W3217385597 hasRelatedWork W2748952813 @default.
- W3217385597 hasRelatedWork W2899084033 @default.
- W3217385597 hasRelatedWork W3032375762 @default.
- W3217385597 hasRelatedWork W3108674512 @default.
- W3217385597 hasVolume "3" @default.
- W3217385597 isParatext "false" @default.
- W3217385597 isRetracted "false" @default.
- W3217385597 magId "3217385597" @default.
- W3217385597 workType "article" @default.