FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W4221036651> ?p ?o ?g. }

• W4221036651 abstract "Consequences of distal renal tubular acidosis (dRTA) on growth, bone and kidney, sometimes associated with hearing loss, may significantly affect quality of life (QoL). This descriptive qualitative study explores QoL linked to dRTA and gathers the impressions of patients with this rare disease (and caregivers) 5 years after enrolment in a clinical study, during which patients were treated with ADV7103, a prolonged-release granule formulation combining potassium citrate and potassium bicarbonate. Semi-structured, one-hour interviews with 6 adult and 13 paediatric patients with a confirmed diagnosis of dRTA and with parents of paediatric patients were performed using an interview guide. Qualitative analysis of anonymized interview transcripts based on grounded theory was conducted.The main QoL domains impacted by dRTA and its treatment were education/work, social/family life, and emotional and physical well-being. ADV7103 (administered twice daily) was compared with the standard of care (SoC) taken before study entry (more than twice daily). Patients/parents reported that switching from previous SoC to ADV7103 had changed their lives: Difficulties at school due to burdensome administrative issues and need to explain disease and treatment affecting all families of paediatric patients (n = 13) disappeared, facilitating parents who had stopped working (to deal with their child's treatment) to return to work, Family functioning was improved (n = 18), as travel and holidays became easier to organise and patients/parents stopped thinking about managing treatment daily/nightly, reducing tension in the family or couple, The emotional burden of disease perceived was relieved (n = 12) in the absence of treatment-related invasive questions from others, Gastro-intestinal adverse events and taste problems improved with ADV7103 (n = 18) and better compliance led to milder physical impacts and less need to be hospitalised. The mean satisfaction score with ADV7103 compared to SoC was 9 out of 10 (10 = very satisfied). ADV7103 exceeded or met the expectations of 14 out of 17 patients that commented on that.Qualitative interviews show that dRTA and its treatment have a significant impact on QoL of patients and parents and that ADV7103 helps improve daily-life and reduces treatment burden, resulting in greater overall satisfaction of the patients and their families. Trial registration EU Clinical Trials Register, EudraCT 2013-003828-36 on the 3rd of September 2013." @default.
• W4221036651 created "2022-04-03" @default.
• W4221036651 creator A5010906204 @default.
• W4221036651 creator A5045016380 @default.
• W4221036651 creator A5060470663 @default.
• W4221036651 creator A5064490457 @default.
• W4221036651 creator A5085038511 @default.
• W4221036651 creator A5089822678 @default.
• W4221036651 date "2022-03-28" @default.
• W4221036651 modified "2023-10-18" @default.
• W4221036651 title "Lived experiences of patients with distal renal tubular acidosis treated with ADV7103 and of their caregivers: a qualitative study" @default.
• W4221036651 cites W1502059937 @default.
• W4221036651 cites W1520694115 @default.
• W4221036651 cites W1979290264 @default.
• W4221036651 cites W1984207232 @default.
• W4221036651 cites W1985115419 @default.
• W4221036651 cites W2075238916 @default.
• W4221036651 cites W2094625675 @default.
• W4221036651 cites W2104000083 @default.
• W4221036651 cites W2120184209 @default.
• W4221036651 cites W2123009097 @default.
• W4221036651 cites W2142341955 @default.
• W4221036651 cites W2147982456 @default.
• W4221036651 cites W2191300343 @default.
• W4221036651 cites W2288857480 @default.
• W4221036651 cites W2334366154 @default.
• W4221036651 cites W2586076834 @default.
• W4221036651 cites W2591029090 @default.
• W4221036651 cites W2747296868 @default.
• W4221036651 cites W2762793716 @default.
• W4221036651 cites W2888568249 @default.
• W4221036651 cites W2915633091 @default.
• W4221036651 cites W3044318621 @default.
• W4221036651 cites W3050406842 @default.
• W4221036651 cites W3130208825 @default.
• W4221036651 cites W4206960168 @default.
• W4221036651 cites W4211209444 @default.
• W4221036651 cites W4247145689 @default.
• W4221036651 cites W4254404239 @default.
• W4221036651 cites W4255637448 @default.
• W4221036651 cites W582433670 @default.
• W4221036651 doi "https://doi.org/10.1186/s13023-022-02294-w" @default.
• W4221036651 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/35346296" @default.
• W4221036651 hasPublicationYear "2022" @default.
• W4221036651 type Work @default.
• W4221036651 citedByCount "1" @default.
• W4221036651 countsByYear W42210366512022 @default.
• W4221036651 crossrefType "journal-article" @default.
• W4221036651 hasAuthorship W4221036651A5010906204 @default.
• W4221036651 hasAuthorship W4221036651A5045016380 @default.
• W4221036651 hasAuthorship W4221036651A5060470663 @default.
• W4221036651 hasAuthorship W4221036651A5064490457 @default.
• W4221036651 hasAuthorship W4221036651A5085038511 @default.
• W4221036651 hasAuthorship W4221036651A5089822678 @default.
• W4221036651 hasBestOaLocation W42210366511 @default.
• W4221036651 hasConcept C126322002 @default.
• W4221036651 hasConcept C144024400 @default.
• W4221036651 hasConcept C159110408 @default.
• W4221036651 hasConcept C187212893 @default.
• W4221036651 hasConcept C190248442 @default.
• W4221036651 hasConcept C2779134260 @default.
• W4221036651 hasConcept C2779951463 @default.
• W4221036651 hasConcept C36289849 @default.
• W4221036651 hasConcept C71924100 @default.
• W4221036651 hasConceptScore W4221036651C126322002 @default.
• W4221036651 hasConceptScore W4221036651C144024400 @default.
• W4221036651 hasConceptScore W4221036651C159110408 @default.
• W4221036651 hasConceptScore W4221036651C187212893 @default.
• W4221036651 hasConceptScore W4221036651C190248442 @default.
• W4221036651 hasConceptScore W4221036651C2779134260 @default.
• W4221036651 hasConceptScore W4221036651C2779951463 @default.
• W4221036651 hasConceptScore W4221036651C36289849 @default.
• W4221036651 hasConceptScore W4221036651C71924100 @default.
• W4221036651 hasIssue "1" @default.
• W4221036651 hasLocation W42210366511 @default.
• W4221036651 hasLocation W42210366512 @default.
• W4221036651 hasLocation W42210366513 @default.
• W4221036651 hasLocation W42210366514 @default.
• W4221036651 hasOpenAccess W4221036651 @default.
• W4221036651 hasPrimaryLocation W42210366511 @default.
• W4221036651 hasRelatedWork W192322703 @default.
• W4221036651 hasRelatedWork W1983984088 @default.
• W4221036651 hasRelatedWork W1985045 @default.
• W4221036651 hasRelatedWork W2000702096 @default.
• W4221036651 hasRelatedWork W2094750660 @default.
• W4221036651 hasRelatedWork W2111561367 @default.
• W4221036651 hasRelatedWork W2136330368 @default.
• W4221036651 hasRelatedWork W2316828100 @default.
• W4221036651 hasRelatedWork W2332688984 @default.
• W4221036651 hasRelatedWork W4381570658 @default.
• W4221036651 hasVolume "17" @default.
• W4221036651 isParatext "false" @default.
• W4221036651 isRetracted "false" @default.
• W4221036651 workType "article" @default.