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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.
J Adolesc Health ; 65(2): 274-279, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31196783

RESUMO

PURPOSE: The aim of the article was to understand adolescents' and parents' decision-making process related to gender-affirming hormone therapy (GAHT). METHODS: We conducted qualitative semistructured interviews with transgender adolescents who began testosterone for GAHT in the prior year and the parents of such adolescents. Questions focused on decision-making roles, steps in the decision process, and factors considered in the decision. Participants used pie charts to describe the division of responsibility for the decision. All interviews were coded by at least two members of the research team with disagreements resolved through discussion. Thematic analysis was used to analyze the data. RESULTS: Seventeen adolescents and 13 parents were interviewed (12 dyads). The process of deciding about GAHT involves a series of small conversations, typically with the adolescent advocating to start treatment and the parent feeling hesitant. In most cases, after seeking information from the Internet, healthcare providers and personal contacts move toward acceptance and agree to start treatment. Although adolescents have some short-term concerns, such as about needles, parents' concerns relate more to long-term risks. Ultimately, for both parents and adolescents, the benefits of treatment outweigh any concerns, and they are in agreement about the goals of personal confidence, comfort in one's body and happiness. CONCLUSIONS: To the extent that the decision about GAHT is a medical decision, the decision process is similar to others. However, decisions about GAHT are much more about gender identity than medical risks, suggesting that interventions based in a medical framework may not aid in supporting decision-making.

3.
J Pediatr Gastroenterol Nutr ; 68(3): 339-342, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30418412

RESUMO

Shared decision making (SDM) is central to patient-centered medicine and has the potential to improve outcomes for pediatric patients with inflammatory bowel diseases. We surveyed specialists about their use of SDM in the decision to start a tumor necrosis factor-α inhibitor in pediatric patients. Results were compared between those who reported using SDM and those who did not. Of 209 respondents, 157 (75%) reported using SDM. Physician/practice characteristics were similar between users and nonusers. There were no statistically significant differences between groups in the components deemed important to the decision-making process nor the number of barriers or facilitators to SDM. Exploratory analyses suggested that physicians using SDM were more accepting of adolescent involvement in the decision-making process. Our results question the effectiveness of using reported barriers and facilitators to guide interventions to improve use of SDM, and suggest further work is needed to understand the adolescent role in decision making.

4.
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.
J Pediatr Health Care ; 32(1): 21-28, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-28866436

RESUMO

INTRODUCTION: The purpose of this study was to explore the communication behaviors demonstrated by parents of children with chronic conditions and provider team members when communicating about the child's care in outpatient clinics using concepts from the Theory of Shared Communication (TSC). METHODS: This was a secondary data analysis of 30 previously recorded pediatric clinic visits. Communication among parents and provider team members was analyzed using a researcher-developed coding scheme based on the TSC. RESULTS: Provider team members dominated communication during clinic visits, showing more frequent use of asking, explaining, advocating, and negotiating behaviors than parents. Parents were engaged in communication with frequent asking, explaining, and advocating behaviors. DISCUSSION: Parents of children with chronic conditions and multidisciplinary providers demonstrated the communication behaviors of the TSC in an outpatient clinic setting. Provider dominance of communication in the clinic setting may disempower parents and impair relationships.


Assuntos
Assistência Ambulatorial/psicologia , Doença Crônica/terapia , Comunicação , Pais , Pediatria , Relações Profissional-Família , Criança , Doença Crônica/psicologia , Tomada de Decisões , Feminino , Humanos , Entrevistas como Assunto , Masculino , Meio-Oeste dos Estados Unidos , Negociação , Pais/educação , Pais/psicologia , Pesquisa Qualitativa , Gravação em Vídeo
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
8.
J Pediatr Gastroenterol Nutr ; 63(6): e176-e181, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27749390

RESUMO

OBJECTIVES: The aim of the study was to understand the association between parents' perceptions of the decision process and the decision outcomes in decisions about the use of biologics in pediatric chronic conditions. METHODS: We mailed surveys to parents of children with inflammatory bowel disease or juvenile idiopathic arthritis who had started treatment with biologics in the prior 2 years and were treated at either of 2 children's hospitals. The survey included measures of the decision process, including decision control and physician engagement, and decision outcomes, including conflict and regret. We used means and frequencies to assess the response distributions. General linear models were used to test the associations between decision process and decision outcomes. RESULTS: We had 201 respondents (response rate 54.9%). Approximately 47.0% reported using shared decision making. Each physician engagement behavior was experienced by the majority of parents, with the highest percentage reporting that their child's physician used language they understood and listened to them. Approximately 48.5% of parents had decisional conflict scores of 25 or greater, indicating high levels of conflict. Approximately 28.2% had no regret, 31.8% had mild regret, and the remaining 40.0% had moderate to severe regret. Shared decision making was not associated with improved decisional conflict, but physician engagement behaviors were associated with both decisional conflict and regret. CONCLUSIONS: Improving decision outcomes will require more than just focusing on who parents perceive as controlling the final decision. Developing interventions that facilitate specific physician engagement behaviors may decrease parents' distress around decision making and improve decision outcomes.


Assuntos
Produtos Biológicos/uso terapêutico , Tomada de Decisões , Pais/psicologia , Adolescente , Artrite Juvenil/tratamento farmacológico , Criança , Comunicação , Emoções , Feminino , Humanos , Doenças Inflamatórias Intestinais/tratamento farmacológico , Masculino , Médicos/psicologia , Inquéritos e Questionários
9.
Pediatr Rheumatol Online J ; 14(1): 53, 2016 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-27641835

RESUMO

BACKGROUND: Parents struggle when making treatment decisions for children with arthritis or other chronic conditions. Understanding their decision-making process is an essential step towards improving the decision-making experience. The objective of this study was to describe parents' information needs and the influences on their decision making about treatment with TNF-α inhibitors. METHODS: Survey domains were developed based on qualitative data and cognitive interviewing. We mailed the survey to parents of children with juvenile idiopathic arthritis or inflammatory bowel disease who had initiated treatment with TNF-α inhibitors in the prior 2 years. Data were analyzed using descriptive and non-parametric statistics. RESULTS: Survey response rate was 54.9 %. Each item had <2 % missing responses. Parents used an array of information sources when deciding about treatment with TNF-α inhibitors. Resources other than their child's specialist were most often used to increase confidence in parents' decisions or because they wanted to know more about other people's experiences being treated with TNF-α inhibitors, rather than due to a lack of understanding. All but two (cost and route of administration) of the influential decision factors were very or extremely important to the majority of participants with factors related to long-term side effects, treatment efficacy, and disease impact being most important. CONCLUSIONS: This study describes parents' information needs and influential factors in treatment decision making. Results suggest that future work should be aimed at helping families weigh risks and benefits, such as through decision support interventions, as well as developing opportunities to include people beyond the family and physician in the decision-making process.


Assuntos
Artrite Juvenil , Tomada de Decisões/ética , Doenças Inflamatórias Intestinais , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Adolescente , Artrite Juvenil/tratamento farmacológico , Artrite Juvenil/imunologia , Artrite Juvenil/psicologia , Criança , Feminino , Humanos , Doenças Inflamatórias Intestinais/tratamento farmacológico , Doenças Inflamatórias Intestinais/imunologia , Doenças Inflamatórias Intestinais/psicologia , Entrevista Psicológica/métodos , Masculino , Conduta do Tratamento Medicamentoso/ética , Pais/psicologia , Relações Profissional-Família , Medição de Risco/métodos , Fatores Socioeconômicos , Inquéritos e Questionários , Estados Unidos
10.
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
11.
Matern Child Health J ; 20(3): 665-73, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26518006

RESUMO

OBJECTIVE: Shared decision making (SDM) is most needed when there are multiple treatment options and no "right" choice. As with quality and experience of care, frequency of SDM may vary by health condition. The objectives of this study were (1) to compare parent report of SDM between a physical and a behavioral health condition and; (2) to compare parent report of SDM between two different behavioral health conditions. METHODS: Data on children age 3-17 years with asthma, attention deficit/hyperactivity disorder (ADHD), and/or autism spectrum disorder (ASD) were drawn from the 2009/10 National Survey of Children with Special Health Care Needs. Weighted logistic regression was used to compare a parent-reported, composite measure of SDM. Analyses controlled for sociodemographic factors that may influence experience of SDM. RESULTS: Compared to parents of children with asthma, parents of children with ADHD were significantly less likely to report experiencing consistent SDM (AOR 0.73). Compared to parents of children with ADHD, those of children with ASD had significantly lower odds of experiencing consistent SDM (AOR 0.59). Those with both ADHD and ASD had the same odds as those with ASD alone of experiencing consistent SDM. CONCLUSION: Use of SDM is particularly limited in developmental and behavioral conditions, such as ADHD and ASD. These data suggest that challenges to implementing SDM may include disease type, complexity, and use of specialty care. Research to identify specific barriers and facilitators of SDM is needed to inform interventions that will promote SDM in developmental and behavioral conditions.


Assuntos
Asma/terapia , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Transtorno do Espectro Autista/terapia , Tomada de Decisões , Crianças com Deficiência/estatística & dados numéricos , Pais , Relações Profissional-Família , Adolescente , Asma/diagnóstico , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Espectro Autista/diagnóstico , Cuidadores , Criança , Pré-Escolar , Crianças com Deficiência/psicologia , Feminino , Humanos , Modelos Logísticos , Masculino , Relações Pais-Filho , Inquéritos e Questionários
12.
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
13.
Otolaryngol Head Neck Surg ; 154(3): 405-20, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26645531

RESUMO

OBJECTIVE: Shared decision making (SDM), an integrative patient-provider communication process emphasizing discussion of scientific evidence and patient/family values, may improve quality care delivery, promote evidence-based practice, and reduce overuse of surgical care. Little is known, however, regarding SDM in elective surgical practice. The purpose of this systematic review is to synthesize findings of studies evaluating use and outcomes of SDM in elective surgery. DATA SOURCES: PubMed, Cochrane CENTRAL, EMBASE, CINAHL, and SCOPUS electronic databases. REVIEW METHODS: We searched for English-language studies (January 1, 1990, to August 9, 2015) evaluating use of SDM in elective surgical care where choice for surgery could be ascertained. Identified studies were independently screened by 2 reviewers in stages of title/abstract and full-text review. We abstracted data related to population, study design, clinical dilemma, use of SDM, outcomes, treatment choice, and bias. RESULTS: Of 10,929 identified articles, 24 met inclusion criteria. The most common area studied was spine (7 of 24), followed by joint (5 of 24) and gynecologic surgery (4 of 24). Twenty studies used decision aids or support tools, including modalities that were multimedia/video (13 of 20), written (3 of 20), or personal coaching (4 of 20). Effect of SDM on preference for surgery was mixed across studies, showing a decrease in surgery (9 of 24), no difference (8 of 24), or an increase (1 of 24). SDM tended to improve decision quality (3 of 3) as well as knowledge or preparation (4 of 6) while decreasing decision conflict (4 of 6). CONCLUSION: SDM reduces decision conflict and improves decision quality for patients making choices about elective surgery. While net findings show that SDM may influence patients to choose surgery less often, the impact of SDM on surgical utilization cannot be clearly ascertained.


Assuntos
Comportamento de Escolha , Tomada de Decisões , Procedimentos Cirúrgicos Eletivos , Técnicas de Apoio para a Decisão , Humanos
15.
Med Decis Making ; 35(6): 703-13, 2015 08.
Artigo em Inglês | MEDLINE | ID: mdl-25899248

RESUMO

BACKGROUND: In the context of pediatric chronic conditions, patients and families are called upon repeatedly to make treatment decisions. However, little is known about how their decision making evolves over time. The objective was to understand parents' processes for treatment decision making in pediatric chronic conditions. METHODS: We conducted a qualitative, prospective longitudinal study using recorded clinic visits and individual interviews. After consent was obtained from health care providers, parents, and patients, clinic visits during which treatment decisions were expected to be discussed were video-recorded. Parents then participated in sequential telephone interviews about their decision-making experience. Data were coded by 2 people and analyzed using framework analysis with sequential, time-ordered matrices. RESULTS: 21 families, including 29 parents, participated in video-recording and interviews. We found 3 dominant patterns of decision evolution. Each consisted of a series of decision events, including conversations, disease flares, and researching of treatment options. Within all 3 patterns there were both constant and evolving elements of decision making, such as role perceptions and treatment expectations, respectively. After parents made a treatment decision, they immediately turned to the next decision related to the chronic condition, creating an iterative cycle. CONCLUSION: In this study, decision making was an iterative process occurring in 3 distinct patterns. Understanding these patterns and the varying elements of parents' decision processes is an essential step toward developing interventions that are appropriate to the setting and that capitalize on the skills families may develop as they gain experience with a chronic condition. Future research should also consider the role of children and adolescents in this decision process.


Assuntos
Doença Crônica/terapia , Tomada de Decisões , Pais/psicologia , Adolescente , Antecipação Psicológica , Artrite Juvenil/psicologia , Artrite Juvenil/terapia , Produtos Biológicos/efeitos adversos , Produtos Biológicos/uso terapêutico , Criança , Doença Crônica/psicologia , Cultura , Feminino , Humanos , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/terapia , Entrevistas como Assunto , Estudos Longitudinais , Masculino , Estudos Prospectivos , Pesquisa Qualitativa , Medição de Risco , Fator de Necrose Tumoral alfa/antagonistas & inibidores
16.
Med Decis Making ; 35(3): 403-8, 2015 04.
Artigo em Inglês | MEDLINE | ID: mdl-25145576

RESUMO

There is growing interest in pediatric decision science, spurred by policies advocating for children's involvement in medical decision making. Challenges specific to pediatric decision research include the dynamic nature of child participation in decisions due to the growth and development of children, the family context of all pediatric decisions, and the measurement of preferences and outcomes that may inform decision making in the pediatric setting. The objectives of this article are to describe each of these challenges, to provide decision researchers with insight into pediatric decision making, and to establish a blueprint for future research that will contribute to high-quality pediatric medical decision making. Much work has been done to address gaps in pediatric decision science, but substantial work remains. Understanding and addressing the challenges that exist in pediatric decision making may foster medical decision-making science across the age spectrum.


Assuntos
Tomada de Decisões , Família , Participação do Paciente , Pediatria , Pesquisa , Humanos , Preferência do Paciente
17.
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
18.
Pediatr Rheumatol Online J ; 11(1): 34, 2013 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-24079577

RESUMO

BACKGROUND: The increase in therapeutic options for juvenile idiopathic arthritis (JIA) has added complexity to treatment decisions. Shared decision making has the potential to help providers and families work together to choose the best possible option for each patient from the array of choices. As part of a needs assessment, prior to design and implementation of shared decision making interventions, we conducted a qualitative assessment of clinicians' current approaches to treatment decision making in JIA. METHODS: Pediatric rheumatology clinicians were recruited from 2 academic children's hospitals affiliated with a quality improvement learning network, using purposive and snowball sampling. Semi-structured interviews elicited how clinicians with prescribing authority (n = 10) interact with families to make treatment decisions. Interviews were audio-recorded and transcribed verbatim. A multi-disciplinary research team used content analysis to analyze the interview data.To validate data from individual interviews and enrich our understanding, we presented the interview results to pediatric rheumatology clinicians attending a learning network meeting (n = 24 from 12 children's hospitals). We then asked the clinicians questions to further identify and discuss areas of variation in the decision-making processes. RESULTS: Clinicians described a decision-making process in which they, rather than the family or other care team members, consistently initiated treatment decisions. Initial treatment options presented to families generally reflected the clinician's preferred treatment approaches, which differed across clinicians. Clinicians used various methods to inform families about treatment options and tailor information according to perceptions of a family's information needs, level of comprehension or mood (e.g. anxiety). The attributes of medication presented to families fell into 4 categories: benefits, risks, logistics and family preferences. Clinicians typically included family members in the decision to initiate JIA treatment after limiting the options to fit the clinical situation and the clinician's own preferences. Family members' preferences were seen as more integral in the decision to stop treatment after symptom remission. CONCLUSIONS: Decision making about initial JIA treatment appears to be largely driven by clinician preferences. Family preferences are more likely to be considered for treatment discontinuation. Opportunities exist to develop, test, and implement tools to facilitate shared decision making in pediatric rheumatology.

19.
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
20.
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
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