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1.
Contemp Clin Trials Commun ; 16: 100447, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31538130

RESUMO

Background: Shared decision making (SDM) between families and physicians may facilitate informed, timely decisions to proceed with biologic therapy in children with inflammatory bowel disease (IBD). Our team previously developed an SDM tool to aid communication between physicians and families when considering biologic therapy for children with IBD. Objective: We are conducting a prospective, pre-post pilot trial of a new SDM tool. The primary aim of the study is to assess feasibility of both the intervention and trial procedures for a future large-scale trial. Methods: We are enrolling physicians with experience prescribing biologic therapy in the past year and families of children with IBD. Families in the intervention arm receive a 3-step intervention including a letter sent before trial consent or clinic appointment, an in-clinic decision tool and a follow-up phone call. Our primary trial outcome is a measure of feasibility, with measures of clinical and decision outcomes secondary. We seek to enroll 27 families in each of 2 arms (usual-care and intervention) and plan data collection at the time of the initial visit or hospital stay, and at 1 week, 3 months, and 6 months after the initial visit. Conclusion: This study protocol is designed to demonstrate that integrating novel consent procedures, including timing and multiple versions of written consent, may increase trial feasibility while maintaining scientific rigor and full protection of study participants.

2.
Am J Med Qual ; : 1062860619850322, 2019 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-31115254

RESUMO

Measures of health care quality are produced from a variety of data sources, but often, physicians do not believe these measures reflect the quality of provided care. The aim was to assess the value to health system leaders (HSLs) and parents of benchmarking on health care quality measures using data mined from the electronic health record (EHR). Using in-context interviews with HSLs and parents, the authors investigated what new decisions and actions benchmarking using data mined from the EHR may enable and how benchmarking information should be presented to be most informative. Results demonstrate that although parents may have little experience using data on health care quality for decision making, they affirmed its potential value. HSLs expressed the need for high-confidence, validated metrics. They also perceived barriers to achieving meaningful metrics but recognized that mining data directly from the EHR could overcome those barriers. Parents and HSLs need high-confidence health care quality data to support decision making.

3.
Clin Pediatr (Phila) ; 58(2): 191-198, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30362824

RESUMO

To understand how parents and physicians make decisions regarding antibiotics and whether a potential associated risk of obesity would alter decisions, we conducted a qualitative study of parents and physicians who care for children. Parent focus groups and physician interviews used a guide focused on experience with antibiotics and perceptions of risks and benefits, including obesity. Content analysis was used to understand how a risk of obesity would influence antibiotic decisions. Most parents (n = 59) and physicians (n = 22) reported limited discussion about any risks at the time of antibiotic prescriptions. With an acute illness, most parents prioritized symptomatic improvement and chose to start antibiotics. Physicians' treatment preferences were varied. An obesity risk did not change most parents' or physicians' preferences. Given that parent-physician discussion at the time of acute illness is unlikely to change preferences, public health messaging may be a more successful approach to counter obesity and antibiotics overuse.


Assuntos
Antibacterianos , Atitude do Pessoal de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , Obesidade Pediátrica/psicologia , Médicos/psicologia , Adolescente , Adulto , Tomada de Decisão Clínica , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Médicos/estatística & dados numéricos , Padrões de Prática Médica , Risco , Adulto Jovem
5.
Clin Pediatr (Phila) ; 56(14): 1336-1344, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28056541

RESUMO

We enrolled 64 patients age 12 to 22 years with a diagnosis of poorly controlled persistent asthma in a 6-month longitudinal crossover study. During the 3 intervention months, participants created personalized text messages to be sent to their phones. Adherence was objectively monitored in 22 of the participants. The adolescent participants gave high ratings on the acceptability of the text messaging system. Asthma control improved from baseline to month 1 regardless of whether teens were in the texting or control group. While participants were in the texting group, their quality of life improved and worry about their asthma decreased. Receiving the text intervention resulted in an increase in adherence of 2.75% each month relative to no intervention, but the improvements were not sustained. There was modest improvement in asthma control and quality of life outcomes, as well as improved adherence during the texting intervention.


Assuntos
Antiasmáticos/uso terapêutico , Asma/tratamento farmacológico , Adesão à Medicação/estatística & dados numéricos , Sistemas de Alerta/estatística & dados numéricos , Envio de Mensagens de Texto/estatística & dados numéricos , Adolescente , Comportamento do Adolescente/psicologia , Adulto , Criança , Estudos Cross-Over , Feminino , Humanos , Estudos Longitudinais , Masculino , Satisfação do Paciente/estatística & dados numéricos , Projetos Piloto , Qualidade de Vida , Adulto Jovem
6.
J Pediatr ; 171: 307-9.e1-2, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26817588

RESUMO

This study assessed pediatric physicians' use of shared decision making (SDM) in 2 chronic conditions. Most physicians indicated that parent and adolescent trust and emotional readiness facilitated SDM, physicians' preferred approach to decision making. At the same time, they perceived few barriers, other than insurance limitations, to using SDM.


Assuntos
Artrite Juvenil/tratamento farmacológico , Doença Crônica/terapia , Tomada de Decisões , Doenças Inflamatórias Intestinais/tratamento farmacológico , Médicos , Adolescente , Adulto , Artrite Juvenil/diagnóstico , Atitude do Pessoal de Saúde , Criança , Doença Crônica/economia , Feminino , Gastroenterologia , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Seguro Saúde , Masculino , Pessoa de Meia-Idade , Pais , Participação do Paciente , Pediatria/métodos , Relações Médico-Paciente , Reumatologia , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Recursos Humanos
7.
Health Expect ; 19(3): 716-26, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-24889468

RESUMO

OBJECTIVE: To compare factors considered by parents to those considered by adolescents making decisions about chronic disease treatments. METHODS: We conducted individual interviews with 15 parent-adolescent dyads in which the adolescent had either juvenile idiopathic arthritis or Crohn's disease. Questions focused on treatment decisions, with an emphasis on the factors that influenced each individual's preferences related to biologic therapies. A multidisciplinary team developed a coding structure. All interviews were coded by two people with disagreements resolved through discussion. We used content analysis and coding matrices to examine decision factors within and between parent-adolescent dyads. RESULTS: Parents and adolescents both participated in decisions about treatment with biologic therapies but considered decision factors differently. In only half of cases did parents and adolescents agree on the factor that most influenced their decision. Although their decision factors often fell into similar categories (e.g. treatment risks, quality of life), in many cases the specifics varied between adolescents and their parents. Adolescents were more likely to focus on immediate treatment effects and quality of life while parents took a longer term view of the decision. Agreement within dyads was most consistent when a special circumstance influenced the treatment decision. CONCLUSIONS: Differences regarding influential decision factors exist within parent-adolescent dyads. Continued research is needed to determine the extent to which such differences are due to individual preferences or to variations in the information available to each person. Future decision support interventions will need to address parents' and adolescents' potentially disparate views and information needs.


Assuntos
Comportamento do Adolescente/psicologia , Artrite Juvenil/psicologia , Doença de Crohn/psicologia , Tomada de Decisões , Pais/psicologia , Centros Médicos Acadêmicos , Adolescente , Saúde do Adolescente , Adulto , Artrite Juvenil/terapia , Criança , Doença Crônica , Doença de Crohn/terapia , Feminino , Hospitais Pediátricos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Ohio , Relações Pais-Filho , Qualidade de Vida , Risco
8.
J Pediatr ; 165(1): 178-183.e1, 2014 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24795203

RESUMO

OBJECTIVE: To use observation to understand how decisions about higher-risk treatments, such as biologics, are made in pediatric chronic conditions. METHODS: Gastroenterology and rheumatology providers who prescribe biologics were recruited. Families were recruited when they had an outpatient appointment in which treatment with biologics was likely to be discussed. Consent/assent was obtained to video the visit. Audio of the visits in which a discussion of biologics took place were transcribed and analyzed. Our coding structure was based on prior research, shared decision making (SDM) concepts, and the initial recorded visits. Coded data were analyzed using content analysis and comparison with an existing model of SDM. RESULTS: We recorded 21 visits that included discussions of biologics. In most visits, providers initiated the decision-making discussion. Detailed information was typically given about the provider's preferred option with less information about other options. There was minimal elicitation of preferences, treatment goals, or prior knowledge. Few parents or patients spontaneously stated their preferences or concerns. An implicit or explicit treatment recommendation was given in nearly all visits, although rarely requested. In approximately one-third of the visits, the treatment decision was never made explicit, yet steps were taken to implement the provider's preferred treatment. CONCLUSIONS: We observed limited use of SDM, despite previous research indicating that parents wish to collaborate in decision making. To better achieve SDM in chronic conditions, providers and families need to strive for bidirectional sharing of information and an explicit family role in decision making.


Assuntos
Tomada de Decisões , Participação do Paciente , Relações Médico-Paciente , Adolescente , Adulto , Assistência Ambulatorial , Criança , Pré-Escolar , Doença Crônica , Feminino , Gastroenterologia , Humanos , Lactente , Masculino , Assistência Centrada no Paciente , Médicos , Reumatologia , Adulto Jovem
9.
J Adolesc Health ; 53(2): 253-9, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23561895

RESUMO

PURPOSE: To understand adolescents' roles and preferences in chronic disease treatment decisions, using biologic therapy decisions as an example. METHODS: We conducted semistructured interviews with adolescents who have Crohn's disease (n = 7) or juvenile idiopathic arthritis (n = 8). Questions focused on biologic therapy decisions, including who participated, preferred roles, and factors considered in the decision. We used pie charts to help teens describe the division of decisional responsibility. We open-coded the initial interviews to develop a coding structure. Interviews then were coded by two people, with disagreements resolved through discussion. Interviews were analyzed using content analysis. RESULTS: Nearly all adolescents participated in the decision about biologic therapy. Roles varied from telling parents about specific symptoms to having the final say in the decision. In addition to discussing their own roles, adolescents identified specific decision-making roles for both parents and physicians. Most factors that influenced adolescents' decision-making related to their quality of life, such as the desire to feel better, concerns about painful injections, and the time needed for treatment. Some adolescents did consider potential side effects and the expected treatment efficacy. Most adolescents were satisfied with how the decision was made, but given a choice would have preferred a different role in the decision. CONCLUSION: Adolescents with chronic disease wish to be involved in treatment decision making, but also seek the involvement of parents and physicians. Parents and providers can assist by providing adolescents with relevant information and by helping teens develop the skills necessary for future medical decision-making.


Assuntos
Artrite Juvenil/terapia , Doença de Crohn/terapia , Tomada de Decisões , Participação do Paciente , Adolescente , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino
10.
J Pediatr Gastroenterol Nutr ; 56(3): 244-50, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23059648

RESUMO

OBJECTIVE: The aim of the study was to describe parents' experiences and the information used when making decisions about tumor necrosis factor-α inhibitor (TNFαi) treatment. METHODS: We interviewed parents of children with Crohn disease (CD) or juvenile idiopathic arthritis who had experience deciding about TNFαi treatment. Interview questions focused on information used to make decisions and factors that influenced decision making. We used thematic analysis for all coding and analysis. Coding structure was developed by a multidisciplinary team review of the initial interviews. Two coders then coded the remaining interviews, compared coding, and resolved disagreements through discussion. Data were analyzed by thematic grouping and then compared between diseases. RESULTS: We interviewed 35 parents. For nearly all parents the decision about TNFαi treatment was the most challenging medical decision they had made; however, parents of children with CD experienced more stress and anxiety than did other parents. Both groups of parents sought information from multiple sources including health care providers, the Internet, and social contacts. They looked for information related to treatment effectiveness, adverse effects, and other individuals' treatment experiences. In CD, information was used to help make the decision, whereas in juvenile idiopathic arthritis it was used to confirm the decision. CONCLUSIONS: The decision-making experience, and associated information seeking, leaves some parents with long-lasting concerns and worry about TNFαi treatment. Providing parents with structured decision-making support may lead to more effective and efficient decision making, decreased psychosocial distress, and, ultimately, improved outcomes for their children.


Assuntos
Artrite Juvenil/tratamento farmacológico , Doença de Crohn/tratamento farmacológico , Tomada de Decisões , Pais/educação , Educação de Pacientes como Assunto , Participação do Paciente , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Adolescente , Anti-Inflamatórios não Esteroides/efeitos adversos , Anti-Inflamatórios não Esteroides/uso terapêutico , Antirreumáticos/efeitos adversos , Antirreumáticos/uso terapêutico , Criança , Pré-Escolar , Feminino , Hospitais Pediátricos , Humanos , Imunossupressores/efeitos adversos , Imunossupressores/uso terapêutico , Comportamento de Busca de Informação , Masculino , Determinação de Necessidades de Cuidados de Saúde , Ohio
11.
J Clin Psychol ; 65(1): 76-93, 2009 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-19051273

RESUMO

This study examined the relation between clinically significant (CS) change in symptoms of attention-deficit/hyperactivity disorder (ADHD) and of oppositional defiant disorder (ODD), and reliable change in multiple domains of functioning in children who participated in the Multimodal Treatment Study of Children with ADHD. Children with CS change in symptoms were significantly more likely than children without CS change to have reliable change across five domains of functioning. Interestingly, however, depending on the measure of functioning, 14 to 52% of children who did not achieve CS change in symptoms showed reliable improvement in functional domains. The results have implications for the definition and measurement of CS change in child treatment-outcome studies.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Comportamento Infantil/psicologia , Relações Interpessoais , Relações Pais-Filho , Transtornos de Ansiedade/complicações , Transtorno do Deficit de Atenção com Hiperatividade/complicações , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Criança , Comorbidade , Feminino , Humanos , Masculino , Transtornos do Humor/complicações , Testes Psicológicos , Resultado do Tratamento
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