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1.
J Rheumatol ; 2019 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-31474591

RESUMO

OBJECTIVE: Initial benchmarking of childhood-onset systemic lupus erythematosus (cSLE) quality indicators revealed suboptimal performance across multiple centers. Our aim was to improve cardiovascular and bone health screenings at a tertiary treatment center for cSLE. This included annual measurements of vitamin D, lipid profiles, and bone mineral density testing via dual x-ray absorptiometry (DXA). METHODS: Quality improvement methodology was applied to design and implement a standardized pre-visit planning process to electronically pend orders for needed screenings prior to a scheduled clinic visit. Process outcomes were measured using statistical process control charts. Univariate analyses were completed to assess patient-level factors. RESULTS: During the study, 123 cSLE patients participated across 619 clinic visits. The percentage of patients with completed screenings improved from 54% to 92% for annual vitamin D, 55% to 84% for annual lipid profiles, and 57% to 78% for DXA, which was sustained for more than 1 year. Providers responded to a majority of abnormal results, and improvement in the average vitamin D level was observed over time. Higher levels of disease activity, damage, number of clinic visits, and screenings completed at baseline were observed in patients with all screenings completed at the end of the intervention. CONCLUSION: Implementation of elements of the chronic illness care model for cSLE management improved performance of cardiovascular and bone health screenings, a step towards preventing long-term morbidity in cSLE. Our study also suggests that more patient interaction with the health system may promote successful completion of health maintenance screenings.

2.
Arthritis Rheumatol ; 71(3): 451-459, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30225949

RESUMO

OBJECTIVE: To determine the relationship between serum levels of S100A8/A9 and S100A12 and the maintenance of clinically inactive disease during anti-tumor necrosis factor (anti-TNF) therapy and the occurrence of disease flare following withdrawal of anti-TNF therapy in patients with polyarticular forms of juvenile idiopathic arthritis (JIA). METHODS: In this prospective, multicenter study, 137 patients with polyarticular-course JIA whose disease was clinically inactive while receiving anti-TNF therapy were enrolled. Patients were observed for an initial 6-month phase during which anti-TNF treatment was continued. For those patients who maintained clinically inactive disease over the 6 months, anti-TNF was withdrawn and they were followed up for 8 months to assess for the occurrence of flare. Serum S100 levels were measured at baseline and at the time of anti-TNF withdrawal. Spearman's rank correlation test, Mann-Whitney U test, Kruskal-Wallis test, receiver operating characteristic (ROC) curve, and Kaplan-Meier survival analyses were used to assess the relationship between serum S100 levels and maintenance of clinically inactive disease and occurrence of disease flare after anti-TNF withdrawal. RESULTS: Over the 6-month initial phase with anti-TNF therapy, the disease state reverted from clinically inactive to clinically active in 24 (18%) of the 130 evaluable patients with polyarticular-course JIA; following anti-TNF withdrawal, 39 (37%) of the 106 evaluable patients experienced a flare. Serum levels of S100A8/A9 and S100A12 were elevated in up to 45% of patients. Results of the ROC analysis revealed that serum S100 levels did not predict maintenance of clinically inactive disease during anti-TNF therapy nor did they predict disease flare after treatment withdrawal. Elevated levels of S100A8/A9 were not predictive of the occurrence of a disease flare within 30 days, 60 days, 90 days, or 8 months following anti-TNF withdrawal, and elevated S100A12 levels had a modest predictive ability for determining the risk of flare within 30, 60, and 90 days after treatment withdrawal. Serum S100A12 levels at the time of anti-TNF withdrawal were inversely correlated with the time to disease flare (r = -0.36). CONCLUSION: Serum S100 levels did not predict maintenance of clinically inactive disease or occurrence of disease flare in patients with polyarticular-course JIA, and S100A12 levels were only moderately, and inversely, correlated with the time to disease flare.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Juvenil/sangue , Artrite Juvenil/tratamento farmacológico , Calgranulina A/sangue , Calgranulina B/sangue , Proteína S100A12/sangue , Adolescente , Biomarcadores/sangue , Criança , Pré-Escolar , Feminino , Humanos , Quimioterapia de Manutenção/métodos , Masculino , Exacerbação dos Sintomas , Fatores de Tempo , Resultado do Tratamento , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Suspensão de Tratamento
3.
Arthritis Rheumatol ; 70(9): 1508-1518, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29604189

RESUMO

OBJECTIVE: To determine the frequency, time to flare, and predictors of disease flare upon withdrawal of anti-tumor necrosis factor (anti-TNF) therapy in children with polyarticular forms of juvenile idiopathic arthritis (JIA) who demonstrated ≥6 months of continuous clinically inactive disease. METHODS: In 16 centers 137 patients with clinically inactive JIA who were receiving anti-TNF therapy (42% of whom were also receiving methotrexate [MTX]) were prospectively followed up. If the disease remained clinically inactive for the initial 6 months of the study, anti-TNF was stopped and patients were assessed for flare at 1, 2, 3, 4, 6, and 8 months. Life-table analysis, t-tests, chi-square test, and Cox regression analysis were used to identify independent variables that could significantly predict flare by 8 months or time to flare. RESULTS: Of 137 patients, 106 (77%) maintained clinically inactive disease while receiving anti-TNF therapy for the initial 6 months and were included in the phase of the study in which anti-TNF therapy was stopped. Stopping anti-TNF resulted in disease flare in 39 (37%) of 106 patients by 8 months. The mean/median ± SEM time to flare was 212/250 ± 9.77 days. Patients with shorter disease duration at enrollment, older age at onset and diagnosis, shorter disease duration prior to experiencing clinically inactive disease, and shorter time from onset of clinically inactive disease to enrollment were found to have significantly lower hazard ratios for likelihood of flare by 8 months (P < 0.05). CONCLUSION: Over one-third of patients with polyarticular JIA with sustained clinically inactive disease will experience a flare by 8 months after discontinuation of anti-TNF therapy. Several predictors of lower likelihood of flare were identified.


Assuntos
Antirreumáticos/administração & dosagem , Artrite Juvenil/tratamento farmacológico , Artrite Juvenil/patologia , Quimioterapia de Indução/estatística & dados numéricos , Suspensão de Tratamento/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Quimioterapia Combinada , Feminino , Humanos , Lactente , Tábuas de Vida , Masculino , Modelos de Riscos Proporcionais , Estudos Prospectivos , Fatores de Risco , Exacerbação dos Sintomas , Fatores de Tempo , Resultado do Tratamento , Fator de Necrose Tumoral alfa/antagonistas & inibidores
4.
J Rheumatol ; 45(5): 690-696, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29419467

RESUMO

OBJECTIVE: Nonadherence is currently an underrecognized and potentially modifiable obstacle to care in juvenile idiopathic arthritis (JIA). The purpose of our study was to design and implement a standardized approach to identifying adherence barriers for youth with JIA across 7 pediatric rheumatology clinics through the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) and to assess the frequency of adherence barriers in patients and their caregivers across treatment modalities. METHODS: An iterative process using coproduction among parents and providers of patients with JIA was used to design the Barriers Assessment Tool to screen for adherence barriers across 4 treatment modalities (i.e., oral medications, injectable medications, infusions, and physical/occupational therapy). This tool was implemented in 7 rheumatology clinics across the United States and patient responses were collected for analysis. RESULTS: Data were collected from 578 parents and 99 patients (n = 44 parent-child dyads). Seventy-seven percent (n = 444) of caregivers and 70% (n = 69) of patients reported at least 1 adherence barrier across all treatment components. The most commonly reported adherence barriers included worry about future consequences of therapy, pain, forgetting, side effects, and embarrassment related to the therapy. There was no significant difference between endorsement of barriers between parents and adolescents. CONCLUSION: Implementing a standardized tool assessing adherence barriers in the JIA population across multiple clinical settings is feasible. Systematic screening sheds light on the factors that make adherence difficult in JIA and identifies targets for future adherence interventions in clinical practice.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Juvenil/tratamento farmacológico , Adesão à Medicação/psicologia , Artrite Juvenil/psicologia , Feminino , Humanos , Masculino , Pais , Inquéritos e Questionários
5.
Arthritis Care Res (Hoboken) ; 70(1): 162-166, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28118522

RESUMO

OBJECTIVE: To measure agreement among raters when scoring the physician/provider global assessment (PGA) of disease activity in patients with juvenile idiopathic arthritis (JIA) with no apparent disease activity, and to identify clinical and laboratory parameters that most strongly influence provider scoring of the PGA. METHODS: Profiles of clinical and laboratory findings from 20 patients with JIA with no apparent disease activity were given to 51 providers, who were asked to score the PGA using a 21-circle visual analog scale (range 0-10). Following initial scoring, providers discussed each profile and reasons for assigning the score given, and then were asked to rescore each profile. Providers were asked to list variables that influenced their scoring most strongly. Using a mixed-model approach, the intraclass correlation coefficient (ICC) of the final scores served as the measure of concordance. RESULTS: A total of 504 PGA scores were obtained. The overall ICC of the initial scores was 0.18. Thus, 18% of nonconcordance of the scores was attributable to patient differences, while 82% was due to provider variation. Variables that influenced scoring most strongly were (in order of frequency) presence of pain, questionable temporomandibular joint involvement, loss of joint motion, presence of any morning stiffness, psoriasis, and past history of uveitis. CONCLUSION: The low ICC suggests poor agreement among providers scoring the PGA in JIA patients with low or no disease activity. Given the ubiquitous use of the PGA in classification and response criteria for JIA and other pediatric rheumatic diseases, substantive efforts are needed to bring about greater uniformity in scoring of global disease activity by providers.


Assuntos
Artrite Juvenil/diagnóstico , Técnicas de Apoio para a Decisão , Articulações/fisiopatologia , Artrite Juvenil/fisiopatologia , Artrite Juvenil/terapia , Humanos , Variações Dependentes do Observador , Valor Preditivo dos Testes , Prognóstico , Reprodutibilidade dos Testes , Índice de Gravidade de Doença
6.
Pediatr Rheumatol Online J ; 15(1): 48, 2017 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-28583183

RESUMO

BACKGROUND: Randomized trials have demonstrated the efficacy of patient decision aids to facilitate shared decision making in clinical situations with multiple medically reasonable options for treatment. However, little is known about how best to implement these tools into routine clinical practice. In addition, reliable implementation of decision aids has been elusive and spread within pediatrics has been slow. We sought to develop and reliably implement a decision aid for treatment of children with juvenile idiopathic arthritis. METHODS: To design our decision aid, we partnered with patient, parent, and clinician stakeholders from the Pediatric Rheumatology Care and Outcomes Improvement Network. Six sites volunteered to use quality improvement methods to implement the decision aid. Four of these sites collected parent surveys following visits to assess outcomes. Parents reported on clinician use of the decision aid and the amount of shared decision making and uncertainty they experienced. We used chi-square tests to compare eligible visits with and without use of the decision aid on the experience of shared decision making and uncertainty. RESULTS: After 18 rounds of testing and revision, stakeholders approved the decision aid design for regular use. Qualitative feedback from end-users was positive. During the implementation project, the decision aid was used in 35% of visits where starting or switching medication was discussed. Clinicians used the decision aid as intended in 68% of these visits. The vast majority of parents reported high levels of shared decision making following visits with (64/76 = 84%) and without (80/95 = 84%) use of the decision aid (p = 1). Similarly, the vast majority of parents reported no uncertainty following visits with (74/76 = 97%) and without (91/95 = 96%) use of the decision aid (p = 0.58). CONCLUSIONS: Although user acceptability of the decision aid was high, reliable implementation in routine clinical care proved challenging. Our parsimonious approach to outcome assessment failed to detect a difference between visits with and without use of our aid. Innovative approaches are needed to facilitate use of decision aids and the assessment of outcomes.


Assuntos
Artrite Juvenil , Técnicas de Apoio para a Decisão , Conduta do Tratamento Medicamentoso , Artrite Juvenil/tratamento farmacológico , Artrite Juvenil/epidemiologia , Artrite Juvenil/psicologia , Canadá , Tomada de Decisões , Tomada de Decisões Assistida por Computador , Medicina Baseada em Evidências/métodos , Feminino , Humanos , Masculino , Conduta do Tratamento Medicamentoso/organização & administração , Conduta do Tratamento Medicamentoso/normas , Determinação de Necessidades de Cuidados de Saúde , Pais/psicologia , Pediatria/métodos , Reprodutibilidade dos Testes , Reumatologia/métodos , Estados Unidos
7.
Nurs Adm Q ; 38(1): 27-54, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24317030

RESUMO

Cincinnati Children's Hospital Medical Center is transforming the way it cares for its patients by building a sophisticated model that focuses on accountable care across the continuum. As nurses from different parts of the organization, we act as change agents to develop an integrated structure built around the patient's needs, from prevention to self-management. We demonstrate how organizational structure, fluid staffing, professional practice, and healthy behaviors operationally catalyze the continuum of care, and how we utilize self-management, community-based programs, and care integration to change the outcome for our patients and families. While care coordination is taking on many forms in medical centers around the world, Cincinnati Children's is proud and passionate about sharing its best practices along the way.


Assuntos
Prestação Integrada de Cuidados de Saúde/organização & administração , Alocação de Recursos para a Atenção à Saúde/métodos , Hospitais Pediátricos/organização & administração , Recursos Humanos de Enfermagem no Hospital/provisão & distribução , Inovação Organizacional , Adolescente , Prática Avançada de Enfermagem/organização & administração , Criança , Pré-Escolar , Prestação Integrada de Cuidados de Saúde/métodos , Humanos , Lactente , Recém-Nascido , Ohio
8.
Pain Manag Nurs ; 14(4): e244-e250, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24315277

RESUMO

Little is known regarding treatment choices of youth diagnosed with juvenile-onset fibromyalgia (JFM) as they move into young adulthood. Additionally, there is little empirical evidence to guide youth with FM into appropriate treatment options, leading to a variety of therapies used to manage FM symptoms. The purpose of this descriptive study was to examine all therapies used by individuals with JFM as they entered young adulthood and the perceived effectiveness of these treatments. As part of a larger follow-up study, participants completed a web-based survey of all current and past treatments received for FM symptoms 2 years after their initial presentation and diagnosis at a pediatric rheumatology clinic. One hundred ten out of 118 eligible patients participated in the follow-up assessment as young adults (mean age 18.97 years; 93.6% female). A majority of participants reported use of conventional medications (e.g., antidepressants, anticonvulsants) and nondrug therapies (e.g., psychotherapy). Currently and within the past 2 years, antidepressant medications were the most commonly used to manage FM. Complementary treatments were used less often, with massage being the most popular choice. Although currently used treatments were reported as being effective, past treatments, especially medications, were viewed as being more variably effective. This is a potential reason why young adults with JFM might try more complementary and alternative approaches to managing their symptoms. More controlled studies are needed to investigate the effectiveness of these complementary methods to assist treatment providers in giving evidence-based treatment recommendations.


Assuntos
Serviços de Saúde do Adolescente , Dor Crônica/terapia , Terapias Complementares , Fibromialgia/terapia , Pesquisas sobre Serviços de Saúde , Adolescente , Idade de Início , Anticonvulsivantes/uso terapêutico , Antidepressivos/uso terapêutico , Dor Crônica/tratamento farmacológico , Dor Crônica/psicologia , Feminino , Fibromialgia/tratamento farmacológico , Fibromialgia/psicologia , Seguimentos , Humanos , Masculino , Psicoterapia , Resultado do Tratamento , Adulto Jovem
10.
J Rheumatol ; 39(1): 174-9, 2012 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-22089460

RESUMO

OBJECTIVE: In a cohort of 70 patients with childhood-onset systemic lupus erythematosus (cSLE): to determine the baseline adherence to medications and visits; to investigate the effects of cellular text messaging reminders (CTMR) on adherence to clinic visits; and to study the influence of CTMR on adherence to use of hydroxychloroquine (HCQ). METHODS: CTMR were sent to 70 patients prior to clinic visits for 14 months. A subgroup of patients were evaluated for medication adherence to HCQ: 19 patients receiving CTMR prior to each scheduled HCQ dose were compared to 22 patients randomized to standard of care education about HCQ. Visit adherence was measured using administrative databases. Pharmacy refill information, self-report of adherence, and HCQ blood levels were utilized to monitor medication adherence to HCQ. Sufficient adherence to visits or HCQ was defined as estimates > 80%. Disease activity was primarily monitored with the Systemic Lupus Erythematosus Disease Activity Index. RESULTS: At baseline, 32% of patients were sufficiently adherent to HCQ, and 81% to clinic visits. Visit adherence improved significantly by > 80% among those who were nonadherent to clinic visits at the baseline CTMR (p = 0.01). CTMR did not influence adherence to HCQ over time. CONCLUSION: Patients with cSLE were only modestly adherent to HCQ and clinic visits. CTMR may be effective for improving visit adherence among adolescents and young adults with cSLE, but it does not improve adherence to HCQ.


Assuntos
Antirreumáticos/uso terapêutico , Hidroxicloroquina/uso terapêutico , Lúpus Eritematoso Sistêmico/tratamento farmacológico , Adesão à Medicação , Mensagem de Texto , Adolescente , Instituições de Assistência Ambulatorial , Antirreumáticos/sangue , Feminino , Humanos , Hidroxicloroquina/sangue , Lúpus Eritematoso Sistêmico/sangue , Lúpus Eritematoso Sistêmico/fisiopatologia , Masculino , Cooperação do Paciente , Inquéritos e Questionários , Adulto Jovem
11.
Arthritis Care Res (Hoboken) ; 63(1): 10-6, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-20842714

RESUMO

OBJECTIVE: The ability to assess quality of care is a necessary component of continuous quality improvement. The assessment typically is accomplished by determination of compliance with a defined set of quality measures (QMs). The objective of this effort was to establish a set of QMs for the assessment of the process of care in juvenile idiopathic arthritis (JIA). METHODS: A 12-member working group composed of representatives from the American College of Rheumatology, American Academy of Pediatrics, American Board of Pediatrics, and Association of Rheumatology Health Professionals was assembled to guide the project. Delphi questionnaires were sent to 237 health professionals involved in the care of children with JIA. A total of 471 items in 23 domains were identified. The working group met via 4 live e-meetings during which results from the Delphi questionnaires were distilled to a reduced draft set. Each working group member selected a proposed QM to investigate and present evidence from the literature as to its attributes and appropriateness for inclusion into the set. Nominal group technique was used to come to consensus on a proposed set of QMs. RESULTS: The proposed set contains 12 QMs within 4 health care domains. Each QM consists of a statement of 1) the assessment to be completed, 2) when the first assessment should be completed and a suggested frequency of assessment during followup, 3) recommendations of appropriate tools or methods of assessment, and 4) initial performance goals. CONCLUSION: Implementation of the proposed QM set will improve the process of care, facilitate continuous quality improvement, and eventuate in improved health outcomes of children with JIA.


Assuntos
Artrite Juvenil/terapia , Pessoal de Saúde/normas , Qualidade da Assistência à Saúde/normas , Sociedades Médicas/normas , Inquéritos e Questionários/normas , Artrite/terapia , Criança , Pessoal de Saúde/tendências , Humanos , Qualidade da Assistência à Saúde/tendências
12.
J Rheumatol ; 36(12): 2813-8, 2009 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-19918032

RESUMO

OBJECTIVE: To determine the frequency of laboratory abnormalities with methotrexate (MTX) use in patients with juvenile idiopathic arthritis (JIA); to identify potential risk factors for MTX toxicity requiring medical interventions; and to compare the frequency of liver function abnormalities in patients treated with MTX to those not treated with MTX. METHODS: Results of MTX surveillance laboratory testing (SLT) available in clinical databases were reviewed for 588 children with JIA. Information on demographics, JIA features, and factors previously associated with increased frequency of SLT abnormalities was obtained. RESULTS: Results of SLT performed in at least 4-month intervals were available for 138 JIA patients whose JIA was not treated with MTX, and for 198 JIA patients treated with MTX plus folic acid. On SLT of the MTX-treated patients, there were 44 of 2650 (1.7%) AST tests and 90 of 2647 (3.4%) ALT tests that exceeded 2 times the upper limit of normal (> 2 ULN) in 30 children (15%). AST or ALT tests at > 2 ULN occurred more often with systemic JIA (p = 0.04), macrophage activation syndrome, during infections, in systemic antibiotic use, and after intensifying JIA drug regimens. AST or ALT results at > 2 ULN were as frequent among MTX-treated children as those not treated with MTX. Renal and hematological abnormalities with MTX were uncommon. CONCLUSION: Liver enzyme abnormalities > 2 ULN are rare in JIA, irrespective of MTX exposure. These data suggest that the adult standard of SLT every 4-8 weeks may not be necessary in children treated with MTX, especially if certain risk factors are absent.


Assuntos
Antirreumáticos , Artrite Juvenil/tratamento farmacológico , Metotrexato , Adolescente , Adulto , Antirreumáticos/uso terapêutico , Antirreumáticos/toxicidade , Doença Hepática Induzida por Substâncias e Drogas/fisiopatologia , Criança , Bases de Dados Factuais , Monitoramento de Medicamentos , Feminino , Humanos , Fígado/efeitos dos fármacos , Fígado/enzimologia , Masculino , Metotrexato/uso terapêutico , Metotrexato/toxicidade , Fatores de Risco
13.
Arthritis Rheum ; 59(10): 1385-91, 2008 Oct 15.
Artigo em Inglês | MEDLINE | ID: mdl-18821661

RESUMO

OBJECTIVE: To examine educational and occupational outcomes among young adults with juvenile idiopathic arthritis (JIA) and peers during the transition from adolescence to emerging adulthood. METHODS: Families were recruited when children with JIA were 8-14 years old. At that time, each child with JIA was matched to a classmate of similar age, sex, and race for inclusion in a comparison group. For the current followup (12.64 years postdiagnosis), 45 participants with JIA, 46 peers, and their parents completed questionnaires soon after the young person's 18th birthday. Disease type and severity were rated by health care providers. RESULTS: Young adults with JIA and peers were similar on a variety of factors, including family background, scholastic and occupational self-concept, and academic competence. The proportion of participants who graduated from high school, were working, and expressed plans to attend postsecondary education or seek employment was similar between groups. Disease type, initial severity, and time since diagnosis were generally not associated with indices of educational and occupational attainment. CONCLUSION: Despite the challenge of having a chronic illness, young adults with JIA were similar to peers on numerous educational and occupational outcomes during the transition from adolescence to emerging adulthood. Interventions to assist academic or occupational functioning may not be necessary for all children with JIA, but additional research is needed to identify subgroups at risk for long-term difficulties.


Assuntos
Artrite Juvenil/epidemiologia , Artrite Juvenil/psicologia , Efeitos Psicossociais da Doença , Ocupações/estatística & dados numéricos , Autoimagem , Adolescente , Escolaridade , Feminino , Humanos , Masculino , Grupo Associado , Fatores de Risco , Índice de Gravidade de Doença , Distribuição por Sexo , Inquéritos e Questionários
14.
Curr Opin Rheumatol ; 20(5): 625-30, 2008 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-18698189

RESUMO

PURPOSE OF REVIEW: Quality improvement is a mandate for all individuals and institutions in medicine. Quality improvement has spread to the specialty certifying boards, resident education accreditation, licensure boards, and hospital medical staff offices. This review summarizes the thrust of quality improvement, provides justification for the conduct of quality improvement work, and reviews the progress in development of quality measures in rheumatology to date. RECENT FINDINGS: The American College of Rheumatology, quality of care, and quality measure committees have developed quality indicators for rheumatoid arthritis, gout, osteoporosis, and drug safety. Pediatric rheumatology is charged with developing quality measures for juvenile idiopathic arthritis; thus, there is a commitment to improve the processes and patient outcomes. Quality improvement science has progressed over the last decade and employs methodology that utilizes small number and rapid improvement cycles. Examples of this quality improvement methodology are elaborated in this review. SUMMARY: The review summarizes the history and current mandates for quality improvement in the medical community, progress made in the development of quality measures for adult rheumatologic conditions, and preliminary quality measures for juvenile idiopathic arthritis, and cites examples of quality improvement in progress in the pediatric rheumatology.


Assuntos
Assistentes de Pediatria/normas , Qualidade da Assistência à Saúde , Doenças Reumáticas/terapia , Reumatologia/normas , Humanos
15.
Arthritis Rheum ; 55(3): 378-84, 2006 Jun 15.
Artigo em Inglês | MEDLINE | ID: mdl-16739206

RESUMO

OBJECTIVE: To determine the relationship between health insurance status and disease outcome in children with juvenile rheumatoid arthritis (JRA). METHODS: JRA patients followed at a tertiary pediatric rheumatology center were assessed for the number of active joints and number of joints with limited range of motion. Disease activity, patient well-being, and pain were measured. Disability was assessed by the Childhood Health Assessment Questionnaire, health-related quality of life by the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale, and the PedsQL Rheumatology Module. Health care resource utilization was estimated based on the number of billing events for health services coded in administrative databases; these databases also provided information on patient health insurance status. Children insured by Medicaid or similar state programs for low-income families were considered to have Medicaid status. Disease outcomes of children with Medicaid status was compared with that of children with private health insurance. RESULTS: Forty (14%) of the 295 children with JRA had Medicaid status. Patients with Medicaid status were more often of nonwhite race (P < or = 0.04) and more frequently had a polyarticular or systemic disease course (P = 0.04) compared with other patients (n = 255). After correction for differences in disease duration, race, JRA onset, and JRA course between groups, children with Medicaid status continued to have significantly higher disability (P < 0.0003), and lower mean PedsQL Generic Core Scale scores (P < 0.05), while health resource utilization appeared similar between groups. CONCLUSION: Despite apparently similar health resource utilization and joint involvement, Medicaid status is associated with significantly lower health-related quality of life and higher disability in JRA.


Assuntos
Artrite Juvenil , Acesso aos Serviços de Saúde/estatística & dados numéricos , Seguro Saúde/estatística & dados numéricos , Medicaid/estatística & dados numéricos , Pessoas sem Cobertura de Seguro de Saúde/estatística & dados numéricos , Adolescente , Artrite Juvenil/diagnóstico , Artrite Juvenil/fisiopatologia , Artrite Juvenil/terapia , Criança , Avaliação da Deficiência , Nível de Saúde , Humanos , Setor Privado , Prognóstico , Qualidade de Vida , Índice de Gravidade de Doença , Inquéritos e Questionários
16.
Arthritis Rheum ; 51(6): 899-908, 2004 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-15593249

RESUMO

OBJECTIVE: To assess the feasibility and construct validity of the willingness-to-pay (WTP) technique for measuring health care preferences in families of children with juvenile idiopathic arthritis (JIA). METHODS: Parents were asked to estimate the monthly US dollar amount they would be willing to pay to obtain for their child the following hypothetical drugs: ARTHRO, which guarantees complete clinical response; and NO-STOM-ACHE, a drug that eliminates gastrointestinal (GI) symptoms. A yes/no question was used with random assignment of the starting bids. Parents who agreed to pay the starting bid were then asked whether they would be willing to pay 200% and then 400% of this initial bid. Socioeconomic data and information on medications, disease activity, patient physical function, wellbeing, and health-related quality of life (HRQOL) were obtained. RESULTS: Sixty-two families of children with JIA were interviewed. GI symptoms were present in 54%, and 53% of the children had joints with active arthritis or limited range of motion. Four parents (7%) were unwilling to pay anything for any of the studied medications. The mean amount (median; mean percentage of available family income) families were willing to pay was $395 ($300; 15%) for ARTHRO and $109 ($80; 4%) for NO-STOM-ACHE. Correlation and regression analysis supported that, adjusted for the available family income, the WTP for ARTHRO was associated with disease activity, pain, and the HRQOL of the patients. After correction for the starting bids and the available family income, the WTP for NO-STOM-ACHE was associated with the patient's HRQOL, pain, and the amount of GI discomfort. CONCLUSION: The WTP technique is feasible and has construct validity for measuring health care preferences for children with JIA. Relatively large WTP estimates support a possible important negative impact of the disease on families of children with JIA.


Assuntos
Artrite Juvenil/economia , Financiamento Pessoal , Gastos em Saúde , Promoção da Saúde/métodos , Pais , Inquéritos e Questionários , Adolescente , Artrite Juvenil/tratamento farmacológico , Artrite Juvenil/fisiopatologia , Criança , Pré-Escolar , Estudos de Viabilidade , Custos de Cuidados de Saúde , Humanos , Lactente , Modelos Econômicos , Qualidade de Vida
17.
J Pediatr Psychol ; 28(4): 275-9, 2003 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-12730284

RESUMO

OBJECTIVE: To evaluate predictions from professionals in pediatric rheumatology regarding the child-rearing practices of caregivers of children with juvenile rheumatoid arthritis (JRA) and healthy classmates. METHODS: Sixteen professionals identified items from the Child-Rearing Practices Report (CRPR) that were expected to differentiate between caregivers of children with JRA (64 mothers, 45 fathers) and caregivers of healthy classmates (64 mothers, 40 fathers). Families were interviewed, and physician ratings of disease severity were obtained. RESULTS: Experts predicted difficulties in protectiveness, discipline, and worry. Ratings from parents of children with JRA showed modest agreement with the professionals, surprising similarity to controls, and a limited association with disease factors. CONCLUSIONS: Contrary to expert opinion, JRA has only a modest influence on some child-rearing practices. Educating health care providers may minimize misperceptions about caring for children with JRA, and screening parents of children with more severe disease may assist in allocating education and services for families.


Assuntos
Artrite Juvenil , Cuidadores/psicologia , Educação Infantil , Adolescente , Adulto , Atitude Frente a Saúde , Criança , Doença Crônica , Feminino , Humanos , Masculino , Inquéritos e Questionários
18.
J Pediatr Psychol ; 28(1): 5-15, 2003.
Artigo em Inglês | MEDLINE | ID: mdl-12490626

RESUMO

OBJECTIVE: To assess parental distress, family functioning, and social support among parents of children with a lifetime diagnosis of juvenile rheumatoid arthritis (JRA) and comparison families. METHODS: Parents of 64 children with JRA (64 mothers, 46 fathers) completed questionnaires and in-home interviews along with 64 matched comparison families. Average time since diagnosis for children with JRA was 70 months. RESULTS: Families of children with JRA generally reported levels of parental distress, family functioning, and social support similar to those for comparison families. More mothers of children with JRA exceeded the clinical cutoff on the SCL-90-R than comparison mothers. Although disease characteristics and social support did not distinguish subgroups of parents at greater risk for problems, family supportiveness and conflict were associated with caseness for mothers of children with JRA. CONCLUSIONS: Families of children with JRA exhibited substantial resilience over the long term. Further multisite study of children recently diagnosed and with more severe forms of JRA is warranted to determine intervention needs, especially for mothers.


Assuntos
Artrite Juvenil/psicologia , Cuidadores/psicologia , Família/psicologia , Adolescente , Adulto , Criança , Saúde da Família , Feminino , Humanos , Masculino , Pais/psicologia , Apoio Social , Estresse Psicológico
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