Matches in SemOpenAlex for { <https://semopenalex.org/work/W2905030083> ?p ?o ?g. }
Showing items 1 to 96 of
96
with 100 items per page.
- W2905030083 abstract "Chronic nonbacterial osteomyelitis (CNO) is an autoinflammatory bone disorder that if left untreated can result in bone destruction and severe continuing pain due to persistent inflammation. The impact this chronic disease has on the daily lives of affected children and their families is not well known. The purpose of this study is to understand the disease burden and socioeconomic and psychological impact of CNO from the patients’ and families’ perspectives and identify areas of improvement for patient care and reduced disease burden based on patients’ and families’ responses. Participants were invited through a social media platform group and at clinic visits at Stanford Children’s Health. An online survey was administered to patients with a diagnosis of CNO made at < 22 years of age and/or the parent/guardian of a patient with CNO diagnosis made at < 22 years of age. There was a total of 284 survey participants. The median age at CNO diagnosis was 10 years (range 2–22+). Median time from first CNO symptom to diagnosis was 2 years. Antibiotics were used in 35% of patients prior to CNO diagnosis; of these, 24% received antibiotics for greater than 6 months. Between 25 and 61% reported a negative effect of CNO on relationships, school/work performance, or finances; and 19–50% reported effects on psychosocial well-being. The majority agreed patients’ performance with daily tasks and hobbies was challenged by pain, fatigue and physical limitation related to CNO. Patients with CNO experienced on average a 2-year delay in diagnosis and receiving effective treatments. At least 25% reported problems with relationships, school, work, finances and well-being due to CNO. Recognition of these challenges emphasizes the need to increase awareness of this disease and address the socioeconomic stressors and mental health issues in order to provide optimal care of children with CNO." @default.
- W2905030083 created "2018-12-22" @default.
- W2905030083 creator A5018024915 @default.
- W2905030083 creator A5038438044 @default.
- W2905030083 creator A5053006895 @default.
- W2905030083 creator A5071947183 @default.
- W2905030083 creator A5074611035 @default.
- W2905030083 creator A5078399326 @default.
- W2905030083 date "2018-12-01" @default.
- W2905030083 modified "2023-10-16" @default.
- W2905030083 title "Disease burden and social impact of pediatric chronic nonbacterial osteomyelitis from the patient and family perspective" @default.
- W2905030083 cites W1915140285 @default.
- W2905030083 cites W1968648237 @default.
- W2905030083 cites W1983713381 @default.
- W2905030083 cites W2047700107 @default.
- W2905030083 cites W2054692843 @default.
- W2905030083 cites W2069617918 @default.
- W2905030083 cites W2093274439 @default.
- W2905030083 cites W2098112903 @default.
- W2905030083 cites W2102943975 @default.
- W2905030083 cites W2114240187 @default.
- W2905030083 cites W2147765967 @default.
- W2905030083 cites W2157777824 @default.
- W2905030083 cites W2167707799 @default.
- W2905030083 cites W2171817761 @default.
- W2905030083 cites W2344011661 @default.
- W2905030083 cites W2510457124 @default.
- W2905030083 cites W2569597712 @default.
- W2905030083 cites W2765501886 @default.
- W2905030083 cites W2767736224 @default.
- W2905030083 cites W2775977913 @default.
- W2905030083 cites W82995129 @default.
- W2905030083 doi "https://doi.org/10.1186/s12969-018-0294-1" @default.
- W2905030083 hasPubMedCentralId "https://www.ncbi.nlm.nih.gov/pmc/articles/6295016" @default.
- W2905030083 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/30547806" @default.
- W2905030083 hasPublicationYear "2018" @default.
- W2905030083 type Work @default.
- W2905030083 sameAs 2905030083 @default.
- W2905030083 citedByCount "27" @default.
- W2905030083 countsByYear W29050300832019 @default.
- W2905030083 countsByYear W29050300832020 @default.
- W2905030083 countsByYear W29050300832021 @default.
- W2905030083 countsByYear W29050300832022 @default.
- W2905030083 countsByYear W29050300832023 @default.
- W2905030083 crossrefType "journal-article" @default.
- W2905030083 hasAuthorship W2905030083A5018024915 @default.
- W2905030083 hasAuthorship W2905030083A5038438044 @default.
- W2905030083 hasAuthorship W2905030083A5053006895 @default.
- W2905030083 hasAuthorship W2905030083A5071947183 @default.
- W2905030083 hasAuthorship W2905030083A5074611035 @default.
- W2905030083 hasAuthorship W2905030083A5078399326 @default.
- W2905030083 hasBestOaLocation W29050300831 @default.
- W2905030083 hasConcept C118552586 @default.
- W2905030083 hasConcept C126322002 @default.
- W2905030083 hasConcept C141071460 @default.
- W2905030083 hasConcept C150966472 @default.
- W2905030083 hasConcept C1862650 @default.
- W2905030083 hasConcept C187212893 @default.
- W2905030083 hasConcept C2779134260 @default.
- W2905030083 hasConcept C2780551157 @default.
- W2905030083 hasConcept C2781118164 @default.
- W2905030083 hasConcept C71924100 @default.
- W2905030083 hasConceptScore W2905030083C118552586 @default.
- W2905030083 hasConceptScore W2905030083C126322002 @default.
- W2905030083 hasConceptScore W2905030083C141071460 @default.
- W2905030083 hasConceptScore W2905030083C150966472 @default.
- W2905030083 hasConceptScore W2905030083C1862650 @default.
- W2905030083 hasConceptScore W2905030083C187212893 @default.
- W2905030083 hasConceptScore W2905030083C2779134260 @default.
- W2905030083 hasConceptScore W2905030083C2780551157 @default.
- W2905030083 hasConceptScore W2905030083C2781118164 @default.
- W2905030083 hasConceptScore W2905030083C71924100 @default.
- W2905030083 hasIssue "1" @default.
- W2905030083 hasLocation W29050300831 @default.
- W2905030083 hasLocation W29050300832 @default.
- W2905030083 hasLocation W29050300833 @default.
- W2905030083 hasLocation W29050300834 @default.
- W2905030083 hasLocation W29050300835 @default.
- W2905030083 hasLocation W29050300836 @default.
- W2905030083 hasOpenAccess W2905030083 @default.
- W2905030083 hasPrimaryLocation W29050300831 @default.
- W2905030083 hasRelatedWork W1986077376 @default.
- W2905030083 hasRelatedWork W1999260110 @default.
- W2905030083 hasRelatedWork W2083246719 @default.
- W2905030083 hasRelatedWork W2163175145 @default.
- W2905030083 hasRelatedWork W2269717656 @default.
- W2905030083 hasRelatedWork W2400067849 @default.
- W2905030083 hasRelatedWork W2600710334 @default.
- W2905030083 hasRelatedWork W2735604125 @default.
- W2905030083 hasRelatedWork W189022569 @default.
- W2905030083 hasRelatedWork W2511633412 @default.
- W2905030083 hasVolume "16" @default.
- W2905030083 isParatext "false" @default.
- W2905030083 isRetracted "false" @default.
- W2905030083 magId "2905030083" @default.
- W2905030083 workType "article" @default.