Matches in SemOpenAlex for { <https://semopenalex.org/work/W2116679877> ?p ?o ?g. }
Showing items 1 to 83 of
83
with 100 items per page.
- W2116679877 endingPage "799" @default.
- W2116679877 startingPage "796" @default.
- W2116679877 abstract "The systemic onset form of juvenile idiopathic arthritis (SO-JIA) is a very serious chronic illness of childhood. At present, there is no specific tool to measure disease activity for SO-JIA. Our long-term goal is to develop a disease activity measure for SO-JIA using a consensus (Delphi) approach. In preparation for the development of this measure, we interviewed both patients and their parents. We sought to elicit specific items reflecting their perceptions of active disease that may be considered for inclusion in a disease activity measure for SO-JIA.SO-JIA patients followed at The Hospital for Sick Children and their parents were chosen by purposive sampling. A trained research coordinator interviewed all participants using open-ended questions to elicit aspects of disease activity (defined as reversible manifestations of disease) of relevance to families. A list of these aspects was then generated and organized by categories to allow item reduction.Fourteen patients (eight females) with a mean age of 11.8 yr (mean disease duration 5.2 yr) and their parents were interviewed. A total of 292 items were generated, with an average of 11 items generated per interview. Arthralgia, ambulation difficulties, rash, decreased energy level and fever were the most common items mentioned by patients and their parents. Mood disturbances, decreased activity levels, arthritis severity and decreased school attendance were also common items identified as relevant aspects of disease activity.This study has allowed us to include patient and parent perspectives in preparation for developing a disease activity measure for SO-JIA. The resulting items will be added to future physician surveys in the further development and validation of a disease activity measure for SO-JIA." @default.
- W2116679877 created "2016-06-24" @default.
- W2116679877 creator A5009557875 @default.
- W2116679877 creator A5015700716 @default.
- W2116679877 creator A5017691670 @default.
- W2116679877 creator A5030955894 @default.
- W2116679877 creator A5037002716 @default.
- W2116679877 creator A5050753060 @default.
- W2116679877 date "2005-03-22" @default.
- W2116679877 modified "2023-09-27" @default.
- W2116679877 title "What does ‘active disease’ mean? patient and parent perceptions of disease activity in the systemic arthritis form of juvenile idiopathic arthritis (SO-JIA)" @default.
- W2116679877 cites W1965683411 @default.
- W2116679877 cites W1973213541 @default.
- W2116679877 cites W1973524530 @default.
- W2116679877 cites W2026205266 @default.
- W2116679877 cites W2073700972 @default.
- W2116679877 cites W2073932727 @default.
- W2116679877 cites W2084947859 @default.
- W2116679877 cites W2108075643 @default.
- W2116679877 cites W2124807661 @default.
- W2116679877 cites W2126782521 @default.
- W2116679877 cites W2159832888 @default.
- W2116679877 cites W2164250283 @default.
- W2116679877 cites W4246455323 @default.
- W2116679877 doi "https://doi.org/10.1093/rheumatology/keh597" @default.
- W2116679877 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/15784631" @default.
- W2116679877 hasPublicationYear "2005" @default.
- W2116679877 type Work @default.
- W2116679877 sameAs 2116679877 @default.
- W2116679877 citedByCount "13" @default.
- W2116679877 countsByYear W21166798772012 @default.
- W2116679877 countsByYear W21166798772013 @default.
- W2116679877 countsByYear W21166798772014 @default.
- W2116679877 countsByYear W21166798772017 @default.
- W2116679877 countsByYear W21166798772019 @default.
- W2116679877 countsByYear W21166798772020 @default.
- W2116679877 crossrefType "journal-article" @default.
- W2116679877 hasAuthorship W2116679877A5009557875 @default.
- W2116679877 hasAuthorship W2116679877A5015700716 @default.
- W2116679877 hasAuthorship W2116679877A5017691670 @default.
- W2116679877 hasAuthorship W2116679877A5030955894 @default.
- W2116679877 hasAuthorship W2116679877A5037002716 @default.
- W2116679877 hasAuthorship W2116679877A5050753060 @default.
- W2116679877 hasConcept C126322002 @default.
- W2116679877 hasConcept C1862650 @default.
- W2116679877 hasConcept C2777077863 @default.
- W2116679877 hasConcept C2778570526 @default.
- W2116679877 hasConcept C2779134260 @default.
- W2116679877 hasConcept C2780574019 @default.
- W2116679877 hasConcept C2780733359 @default.
- W2116679877 hasConcept C70410870 @default.
- W2116679877 hasConcept C71924100 @default.
- W2116679877 hasConceptScore W2116679877C126322002 @default.
- W2116679877 hasConceptScore W2116679877C1862650 @default.
- W2116679877 hasConceptScore W2116679877C2777077863 @default.
- W2116679877 hasConceptScore W2116679877C2778570526 @default.
- W2116679877 hasConceptScore W2116679877C2779134260 @default.
- W2116679877 hasConceptScore W2116679877C2780574019 @default.
- W2116679877 hasConceptScore W2116679877C2780733359 @default.
- W2116679877 hasConceptScore W2116679877C70410870 @default.
- W2116679877 hasConceptScore W2116679877C71924100 @default.
- W2116679877 hasIssue "6" @default.
- W2116679877 hasLocation W21166798771 @default.
- W2116679877 hasLocation W21166798772 @default.
- W2116679877 hasOpenAccess W2116679877 @default.
- W2116679877 hasPrimaryLocation W21166798771 @default.
- W2116679877 hasRelatedWork W1986457461 @default.
- W2116679877 hasRelatedWork W2021925153 @default.
- W2116679877 hasRelatedWork W2026926009 @default.
- W2116679877 hasRelatedWork W2042455858 @default.
- W2116679877 hasRelatedWork W2085413657 @default.
- W2116679877 hasRelatedWork W2290548310 @default.
- W2116679877 hasRelatedWork W2357067669 @default.
- W2116679877 hasRelatedWork W2401185441 @default.
- W2116679877 hasRelatedWork W2570951005 @default.
- W2116679877 hasRelatedWork W3132613571 @default.
- W2116679877 hasVolume "44" @default.
- W2116679877 isParatext "false" @default.
- W2116679877 isRetracted "false" @default.
- W2116679877 magId "2116679877" @default.
- W2116679877 workType "article" @default.