Menu
×
John L. Dart Library
9 a.m. - 6 p.m.
Phone: (843) 722-7550
West Ashley Library
9 a.m. - 6 p.m.
Phone: (843) 766-6635
Folly Beach Library
9 a.m. - 1 p.m.
Phone: (843) 588-2001
Edgar Allan Poe/Sullivan's Island Library
Closed for renovations
Phone: (843) 883-3914
Wando Mount Pleasant Library
9 a.m. - 6 p.m.
Phone: (843) 805-6888
Village Library
9 a.m. - 6 p.m.
Phone: (843) 884-9741
St. Paul's/Hollywood Library
9 a.m. - 6 p.m.
Phone: (843) 889-3300
Otranto Road Library
9 a.m. - 6 p.m.
Phone: (843) 572-4094
Mt. Pleasant Library
9 a.m. – 6 p.m.
Phone: (843) 849-6161
McClellanville Library
9 a.m. - 1 p.m.
Phone: (843) 887-3699
Keith Summey North Charleston Library
9 a.m. – 6 p.m.
Phone: (843) 744-2489
John's Island Library
9 a.m. - 6 p.m.
Phone: (843) 559-1945
Hurd/St. Andrews Library
9 a.m. - 6 p.m.
Phone: (843) 766-2546
Miss Jane's Building (Edisto Library Temporary Location)
9 a.m. – 3 p.m.
Phone: (843) 869-2355
Dorchester Road Library
9 a.m. - 6 p.m.
Phone: (843) 552-6466
Baxter-Patrick James Island
9 a.m. - 6 p.m.
Phone: (843) 795-6679
Main Library
9 a.m. - 6 p.m.
Phone: (843) 805-6930
Bees Ferry West Ashley Library
9 a.m. - 6 p.m.
Phone: (843) 805-6892
Mobile Library
9 a.m. - 5 p.m.
Phone: (843) 805-6909
Today's Hours
John L. Dart Library
9 a.m. - 6 p.m.
Phone: (843) 722-7550
West Ashley Library
9 a.m. - 6 p.m.
Phone: (843) 766-6635
Folly Beach Library
9 a.m. - 1 p.m.
Phone: (843) 588-2001
Edgar Allan Poe/Sullivan's Island Library
Closed for renovations
Phone: (843) 883-3914
Wando Mount Pleasant Library
9 a.m. - 6 p.m.
Phone: (843) 805-6888
Village Library
9 a.m. - 6 p.m.
Phone: (843) 884-9741
St. Paul's/Hollywood Library
9 a.m. - 6 p.m.
Phone: (843) 889-3300
Otranto Road Library
9 a.m. - 6 p.m.
Phone: (843) 572-4094
Mt. Pleasant Library
9 a.m. – 6 p.m.
Phone: (843) 849-6161
McClellanville Library
9 a.m. - 1 p.m.
Phone: (843) 887-3699
Keith Summey North Charleston Library
9 a.m. – 6 p.m.
Phone: (843) 744-2489
John's Island Library
9 a.m. - 6 p.m.
Phone: (843) 559-1945
Hurd/St. Andrews Library
9 a.m. - 6 p.m.
Phone: (843) 766-2546
Miss Jane's Building (Edisto Library Temporary Location)
9 a.m. – 3 p.m.
Phone: (843) 869-2355
Dorchester Road Library
9 a.m. - 6 p.m.
Phone: (843) 552-6466
Baxter-Patrick James Island
9 a.m. - 6 p.m.
Phone: (843) 795-6679
Main Library
9 a.m. - 6 p.m.
Phone: (843) 805-6930
Bees Ferry West Ashley Library
9 a.m. - 6 p.m.
Phone: (843) 805-6892
Mobile Library
9 a.m. - 5 p.m.
Phone: (843) 805-6909
Patron Login
menu
Item request has been placed!
×
Item request cannot be made.
×
Processing Request
Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey.
Item request has been placed!
×
Item request cannot be made.
×
Processing Request
- Author(s): Jones, Jennifer; Cruddas, Marie; Simpson, Amy; Meade, Nick; Pushparajah, Daphnee; Peter, Michelle; Hunter, Amy
- Source:
Orphanet Journal of Rare Diseases; 2/19/2024, Vol. 19 Issue 1, p1-16, 16p- Subject Terms:
- Source:
- Additional Information
- Subject Terms:
- Abstract: Background: Although individually rare, collectively, rare conditions are common and affect a large number of people and are often chronic, life threatening and affect multiple body systems; the majority of them have no effective treatment. The literature has identified many specific challenges for those living with rare conditions, however, we do not know which of these in combination are most likely to impact how someone rates their overall experience of care. The aim of this study is to do further exploratory analysis of the Genetic Alliance UK 2020 Rare Experience survey data to identify which variables are most strongly associated with respondents' overall care experience. Results: There were strong associations between most of the selected survey variables and the overall rated experience of care variable. In the multiple linear regression only nine variables remained in the best fit model: 'Trust and confidence in hospital staff involved in ongoing care'; 'Satisfaction with information provided by healthcare professionals—following diagnosis'; 'The professionals providing care work as a team'; 'Feel care is coordinated effectively'; 'The timing and frequency of appointments are convenient for the patient/carer/family'; 'Whether or not there is a specific healthcare professional to ask questions of about the rare/undiagnosed condition'; 'Experience of searching for a diagnosis'; 'Knowledge of whether there is a specialist centre for the condition'; and 'Number of different clinics attend for the condition'. Conclusions: Our findings indicate the challenges that play the largest part in explaining the varied experiences with rare disease healthcare in the UK for our survey respondents. These challenges should be further investigated with a broader sample of people affected by rare conditions, ideally through the implementation of a comprehensive national rare condition patient registry. Our findings highlight an important potential gap in the Framework, 'trust and confidence in healthcare professionals'; further research is required to fully understand the foundations of trust and confidence. [ABSTRACT FROM AUTHOR]
- Abstract: Copyright of Orphanet Journal of Rare Diseases is the property of BioMed Central and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Contact CCPL
Copyright 2022 Charleston County Public Library Powered By EBSCO Stacks 3.3.0 [350.3] | Staff Login
No Comments.