Clinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinician survey
Abstract Background Because pediatric antineutrophil cytoplasmic antibody-associated vasculitis is rare, management generally relies on adult data. We assessed treatment practices, uptake of existing clinical assessment tools, and interest in pediatric treatment protocols among rheumatologists carin...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2017-08-01
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| Series: | Pediatric Rheumatology Online Journal |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12969-017-0191-z |
| _version_ | 1819058641329717248 |
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| author | Clara Westwell-Roper Joanna M. Lubieniecka Kelly L. Brown Kimberly A. Morishita Cherry Mammen Linda Wagner-Weiner Eric Yen Suzanne C. Li Kathleen M. O’Neil Sivia K. Lapidus Paul Brogan Rolando Cimaz David A. Cabral for ARChiVe Investigators Network within the PedVas initiative |
| author_facet | Clara Westwell-Roper Joanna M. Lubieniecka Kelly L. Brown Kimberly A. Morishita Cherry Mammen Linda Wagner-Weiner Eric Yen Suzanne C. Li Kathleen M. O’Neil Sivia K. Lapidus Paul Brogan Rolando Cimaz David A. Cabral for ARChiVe Investigators Network within the PedVas initiative |
| author_sort | Clara Westwell-Roper |
| collection | DOAJ |
| description | Abstract Background Because pediatric antineutrophil cytoplasmic antibody-associated vasculitis is rare, management generally relies on adult data. We assessed treatment practices, uptake of existing clinical assessment tools, and interest in pediatric treatment protocols among rheumatologists caring for children with granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA). Methods A needs-assessment survey developed by an international working group of pediatric rheumatologists and two nephrologists was circulated internationally. Data were summarized with descriptive statistics. Pearson’s chi-square tests were used in inferential univariate analyses. Results The 209 respondents from 36 countries had collectively seen ~1600 children with GPA/MPA; 144 had seen more than two in the preceding 5 years. Standardized and validated clinical assessment tools to score disease severity, activity, and damage were used by 59, 63, and 36%, respectively; barriers to use included lack of knowledge and limited perceived utility. Therapy varied significantly: use of rituximab rather than cyclophosphamide was more common among respondents from the USA (OR = 2.7 [1.3-5.5], p = 0.0190, n = 139), those with >5 years of independent practice experience (OR = 3.8 [1.3-12.5], p = 0.0279, n = 137), and those who had seen >10 children with GPA/MPA in their careers (OR = 4.39 [2.1-9.1], p = 0.0011, n = 133). Respondents who had treated >10 patients were also more likely to continue maintenance therapy for at least 24 months (OR = 3.0 [1.4-6.4], p = 0.0161, n = 127). Ninety six percent of respondents believed in a need for pediatric-specific treatment guidelines; 46% supported adaptation of adult guidelines while 69% favoured guidelines providing a limited range of treatment options to allow comparison of effectiveness through a registry. Conclusions These data provide a rationale for developing pediatric-specific consensus treatment guidelines for GPA/MPA. While pediatric rheumatologist uptake of existing clinical tools has been limited, guideline uptake may be enhanced if outcomes of consensus-derived treatment options are evaluated within the framework of an international registry. |
| first_indexed | 2024-12-21T13:58:26Z |
| format | Article |
| id | doaj.art-7eb9cd3ab35d4ead8354a2c0442930c4 |
| institution | Directory Open Access Journal |
| issn | 1546-0096 |
| language | English |
| last_indexed | 2024-12-21T13:58:26Z |
| publishDate | 2017-08-01 |
| publisher | BMC |
| record_format | Article |
| series | Pediatric Rheumatology Online Journal |
| spelling | doaj.art-7eb9cd3ab35d4ead8354a2c0442930c42022-12-21T19:01:27ZengBMCPediatric Rheumatology Online Journal1546-00962017-08-0115111010.1186/s12969-017-0191-zClinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinician surveyClara Westwell-Roper0Joanna M. Lubieniecka1Kelly L. Brown2Kimberly A. Morishita3Cherry Mammen4Linda Wagner-Weiner5Eric Yen6Suzanne C. Li7Kathleen M. O’Neil8Sivia K. Lapidus9Paul Brogan10Rolando Cimaz11David A. Cabral12for ARChiVe Investigators Network within the PedVas initiativeClinical Professor, Division of Rheumatology, Department of Pediatrics, University of British Columbia, BC Children’s HospitalSimon Fraser UniversityClinical Professor, Division of Rheumatology, Department of Pediatrics, University of British Columbia, BC Children’s HospitalClinical Professor, Division of Rheumatology, Department of Pediatrics, University of British Columbia, BC Children’s HospitalClinical Professor, Division of Rheumatology, Department of Pediatrics, University of British Columbia, BC Children’s HospitalUniversity of Chicago Comer Children’s HospitalUniversity of California – Los AngelesJoseph M. Sanzari Children’s HospitalRiley Hospital for Children at IU HealthMorristown Medical CenterGreat Ormond Street Hospital NHS Foundation TrustOspedale Pediatrico Meyer FirenzeClinical Professor, Division of Rheumatology, Department of Pediatrics, University of British Columbia, BC Children’s HospitalAbstract Background Because pediatric antineutrophil cytoplasmic antibody-associated vasculitis is rare, management generally relies on adult data. We assessed treatment practices, uptake of existing clinical assessment tools, and interest in pediatric treatment protocols among rheumatologists caring for children with granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA). Methods A needs-assessment survey developed by an international working group of pediatric rheumatologists and two nephrologists was circulated internationally. Data were summarized with descriptive statistics. Pearson’s chi-square tests were used in inferential univariate analyses. Results The 209 respondents from 36 countries had collectively seen ~1600 children with GPA/MPA; 144 had seen more than two in the preceding 5 years. Standardized and validated clinical assessment tools to score disease severity, activity, and damage were used by 59, 63, and 36%, respectively; barriers to use included lack of knowledge and limited perceived utility. Therapy varied significantly: use of rituximab rather than cyclophosphamide was more common among respondents from the USA (OR = 2.7 [1.3-5.5], p = 0.0190, n = 139), those with >5 years of independent practice experience (OR = 3.8 [1.3-12.5], p = 0.0279, n = 137), and those who had seen >10 children with GPA/MPA in their careers (OR = 4.39 [2.1-9.1], p = 0.0011, n = 133). Respondents who had treated >10 patients were also more likely to continue maintenance therapy for at least 24 months (OR = 3.0 [1.4-6.4], p = 0.0161, n = 127). Ninety six percent of respondents believed in a need for pediatric-specific treatment guidelines; 46% supported adaptation of adult guidelines while 69% favoured guidelines providing a limited range of treatment options to allow comparison of effectiveness through a registry. Conclusions These data provide a rationale for developing pediatric-specific consensus treatment guidelines for GPA/MPA. While pediatric rheumatologist uptake of existing clinical tools has been limited, guideline uptake may be enhanced if outcomes of consensus-derived treatment options are evaluated within the framework of an international registry.http://link.springer.com/article/10.1186/s12969-017-0191-zPediatric rheumatologyAnti-neutrophil cytoplasmic antibody-associated vasculitisGranulomatosis with polyangiitisMicroscopic polyangiitisPhysician practice patternsClinical practice guidelines |
| spellingShingle | Clara Westwell-Roper Joanna M. Lubieniecka Kelly L. Brown Kimberly A. Morishita Cherry Mammen Linda Wagner-Weiner Eric Yen Suzanne C. Li Kathleen M. O’Neil Sivia K. Lapidus Paul Brogan Rolando Cimaz David A. Cabral for ARChiVe Investigators Network within the PedVas initiative Clinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinician survey Pediatric Rheumatology Online Journal Pediatric rheumatology Anti-neutrophil cytoplasmic antibody-associated vasculitis Granulomatosis with polyangiitis Microscopic polyangiitis Physician practice patterns Clinical practice guidelines |
| title | Clinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinician survey |
| title_full | Clinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinician survey |
| title_fullStr | Clinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinician survey |
| title_full_unstemmed | Clinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinician survey |
| title_short | Clinical practice variation and need for pediatric-specific treatment guidelines among rheumatologists caring for children with ANCA-associated vasculitis: an international clinician survey |
| title_sort | clinical practice variation and need for pediatric specific treatment guidelines among rheumatologists caring for children with anca associated vasculitis an international clinician survey |
| topic | Pediatric rheumatology Anti-neutrophil cytoplasmic antibody-associated vasculitis Granulomatosis with polyangiitis Microscopic polyangiitis Physician practice patterns Clinical practice guidelines |
| url | http://link.springer.com/article/10.1186/s12969-017-0191-z |
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