FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W4207035797> ?p ?o ?g. }

• W4207035797 abstract "Abstract Purpose Under a societal perspective, disease and treatment attributes that the general public deem important should be considered within value frameworks. The objective was to investigate how members of the general public value attributes beyond health gains and healthcare system expenditures; and better understand their perspectives regarding the importance of attributes typically characterizing rare genetic diseases like Duchenne muscular dystrophy (DMD). Methods Qualitative interviews were conducted to elicit feedback on the importance of disease and treatment attributes from general public participants from three US cities. Participants ranked attributes (scale, 1–10) in terms of importance for future research, reported their rationale for ranking, and provided feedback specific to rare diseases. Interview transcripts were coded using NVivo for thematic analysis. Results The 33 participants (median age, 51 years; 48.5% male) ranked disease severity (mean [median] ranking, 8.7 [9.0]), treatment availability (8.7 [9.0]), and impact on life expectancy (8.4 [9.0]), as most important. The impact on the family, need for equity, and intrinsic value of life were frequently provided rationales. While rare disease as an attribute received a relatively low ranking (6.1 [7.0]), 88% of participants prioritized disease profiles including attributes of severity, health related quality of life (HRQoL) impact, limited lifespan and young age at onset. Conclusion Attributes including disease severity, impact on life expectancy and HRQoL, and treatment availability were all highly important to members of the general public. These findings support the growing evidence regarding the importance of expanding value assessments to include attributes considered important from a societal perspective." @default.
• W4207035797 created "2022-01-26" @default.
• W4207035797 creator A5009860405 @default.
• W4207035797 creator A5029849735 @default.
• W4207035797 creator A5037835747 @default.
• W4207035797 creator A5044548465 @default.
• W4207035797 creator A5067710734 @default.
• W4207035797 creator A5080944749 @default.
• W4207035797 date "2022-01-24" @default.
• W4207035797 modified "2023-10-14" @default.
• W4207035797 title "Societal perspectives on disease and treatment attributes characterizing rare diseases: a qualitative study from the United States" @default.
• W4207035797 cites W1959331022 @default.
• W4207035797 cites W1979290264 @default.
• W4207035797 cites W2002916016 @default.
• W4207035797 cites W2012977771 @default.
• W4207035797 cites W2022695927 @default.
• W4207035797 cites W2044115095 @default.
• W4207035797 cites W2075314561 @default.
• W4207035797 cites W2129660502 @default.
• W4207035797 cites W2138664283 @default.
• W4207035797 cites W2139213716 @default.
• W4207035797 cites W2139632115 @default.
• W4207035797 cites W2145695460 @default.
• W4207035797 cites W2159165123 @default.
• W4207035797 cites W2162877219 @default.
• W4207035797 cites W2519603001 @default.
• W4207035797 cites W2566417860 @default.
• W4207035797 cites W2588901773 @default.
• W4207035797 cites W2589709358 @default.
• W4207035797 cites W2780009273 @default.
• W4207035797 cites W2787881284 @default.
• W4207035797 cites W2788004657 @default.
• W4207035797 cites W2788249140 @default.
• W4207035797 cites W2792037535 @default.
• W4207035797 cites W2795808606 @default.
• W4207035797 cites W2796659008 @default.
• W4207035797 cites W2904047048 @default.
• W4207035797 cites W3033757480 @default.
• W4207035797 doi "https://doi.org/10.1186/s41687-022-00413-6" @default.
• W4207035797 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/35072826" @default.
• W4207035797 hasPublicationYear "2022" @default.
• W4207035797 type Work @default.
• W4207035797 citedByCount "2" @default.
• W4207035797 countsByYear W42070357972022 @default.
• W4207035797 countsByYear W42070357972023 @default.
• W4207035797 crossrefType "journal-article" @default.
• W4207035797 hasAuthorship W4207035797A5009860405 @default.
• W4207035797 hasAuthorship W4207035797A5029849735 @default.
• W4207035797 hasAuthorship W4207035797A5037835747 @default.
• W4207035797 hasAuthorship W4207035797A5044548465 @default.
• W4207035797 hasAuthorship W4207035797A5067710734 @default.
• W4207035797 hasAuthorship W4207035797A5080944749 @default.
• W4207035797 hasBestOaLocation W42070357971 @default.
• W4207035797 hasConcept C119857082 @default.
• W4207035797 hasConcept C133925201 @default.
• W4207035797 hasConcept C138816342 @default.
• W4207035797 hasConcept C142724271 @default.
• W4207035797 hasConcept C144024400 @default.
• W4207035797 hasConcept C15744967 @default.
• W4207035797 hasConcept C159110408 @default.
• W4207035797 hasConcept C189430467 @default.
• W4207035797 hasConcept C190248442 @default.
• W4207035797 hasConcept C2779134260 @default.
• W4207035797 hasConcept C2779951463 @default.
• W4207035797 hasConcept C2908647359 @default.
• W4207035797 hasConcept C36289849 @default.
• W4207035797 hasConcept C41008148 @default.
• W4207035797 hasConcept C512399662 @default.
• W4207035797 hasConcept C71924100 @default.
• W4207035797 hasConcept C74196892 @default.
• W4207035797 hasConcept C74909509 @default.
• W4207035797 hasConcept C99454951 @default.
• W4207035797 hasConceptScore W4207035797C119857082 @default.
• W4207035797 hasConceptScore W4207035797C133925201 @default.
• W4207035797 hasConceptScore W4207035797C138816342 @default.
• W4207035797 hasConceptScore W4207035797C142724271 @default.
• W4207035797 hasConceptScore W4207035797C144024400 @default.
• W4207035797 hasConceptScore W4207035797C15744967 @default.
• W4207035797 hasConceptScore W4207035797C159110408 @default.
• W4207035797 hasConceptScore W4207035797C189430467 @default.
• W4207035797 hasConceptScore W4207035797C190248442 @default.
• W4207035797 hasConceptScore W4207035797C2779134260 @default.
• W4207035797 hasConceptScore W4207035797C2779951463 @default.
• W4207035797 hasConceptScore W4207035797C2908647359 @default.
• W4207035797 hasConceptScore W4207035797C36289849 @default.
• W4207035797 hasConceptScore W4207035797C41008148 @default.
• W4207035797 hasConceptScore W4207035797C512399662 @default.
• W4207035797 hasConceptScore W4207035797C71924100 @default.
• W4207035797 hasConceptScore W4207035797C74196892 @default.
• W4207035797 hasConceptScore W4207035797C74909509 @default.
• W4207035797 hasConceptScore W4207035797C99454951 @default.
• W4207035797 hasFunder F4320315434 @default.
• W4207035797 hasIssue "1" @default.
• W4207035797 hasLocation W42070357971 @default.
• W4207035797 hasLocation W42070357972 @default.
• W4207035797 hasLocation W42070357973 @default.
• W4207035797 hasLocation W42070357974 @default.
• W4207035797 hasOpenAccess W4207035797 @default.
• W4207035797 hasPrimaryLocation W42070357971 @default.
• W4207035797 hasRelatedWork W2069387918 @default.

• next