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1.
Acad Pediatr ; 24(3): 417-423, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37536452

RESUMO

OBJECTIVE: Adapt and test a measure of knowledge for caregivers of children with attention-deficit/hyperactivity disorder (ADHD) and evaluate the impact of the information component of a decision aid (DA) on participant knowledge. METHODS: A set of seven knowledge items were created based on prior knowledge measures and clinical guidelines. As part of a larger cross-sectional survey study of caregivers of children diagnosed with ADHD, caregivers were randomized to one of two arms: 1) a DA arm, where participants reviewed the information component of the Cincinnati Children's Hospital's DA, and 2) a control arm, where participants were not shown a DA. All participants completed the seven knowledge items. Knowledge items were assessed for difficulty, quality of distractors, acceptability, and redundancy. Total knowledge scores (0-100) for the DA and control arm were compared. RESULTS: Caregivers were assigned to the DA arm (n = 243) or the control arm (n = 260). All 7 knowledge items were retained as no items were too difficult or too easy, all response options were used, there were little missing data, and no items were redundant. The overall knowledge score was normally distributed, and almost covered the full range of scores (5-100). Those who received the DA component had higher knowledge scores (M=68, SD=23) than those who did not receive the DA component (M=60, SD=19, P < .01, d=0.4). CONCLUSIONS: The Caregiver ADHD Knowledge (CAKe) measure was acceptable and demonstrated construct validity as those who were assigned to review the DA component demonstrated greater knowledge than those who were not assigned to review the DA component.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Criança , Humanos , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Cuidadores , Estudos Transversais , Inquéritos e Questionários , Técnicas de Apoio para a Decisão
2.
Patient ; 16(6): 579-591, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37667148

RESUMO

BACKGROUND: As new diagnostic imaging technologies are adopted, decisions surrounding diagnostic imaging become increasingly complex. As such, understanding patient preferences in imaging decision making is imperative. OBJECTIVES: We aimed to review quantitative patient preference studies in imaging-related decision making, including characteristics of the literature and the quality of the evidence. METHODS: The Pubmed, Embase, EconLit, and CINAHL databases were searched to identify studies involving diagnostic imaging and quantitative patient preference measures from January 2000 to June 2022. Study characteristics that were extracted included the preference elicitation method, disease focus, and sample size. We employed the PREFS (Purpose, Respondents, Explanation, Findings, Significance) checklist as our quality assessment tool. RESULTS: A total of 54 articles were included. The following methods were used to elicit preferences: conjoint analysis/discrete choice experiment methods (n = 27), contingent valuation (n = 16), time trade-off (n = 4), best-worst scaling (n = 3), multicriteria decision analysis (n = 3), and a standard gamble approach (n = 1). Half of the studies were published after 2016 (52%, 28/54). The most common scenario (n = 39) for eliciting patient preferences was cancer screening. Computed tomography, the most frequently studied imaging modality, was included in 20 studies, and sample sizes ranged from 30 to 3469 participants (mean 552). The mean PREFS score was 3.5 (standard deviation 0.8) for the included studies. CONCLUSIONS: This review highlights that a variety of quantitative preference methods are being used, as diagnostic imaging technologies continue to evolve. While the number of preference studies in diagnostic imaging has increased with time, most examine preventative care/screening, leaving a gap in knowledge regarding imaging for disease characterization and management.

3.
J Genet Couns ; 2023 Aug 26.
Artigo em Inglês | MEDLINE | ID: mdl-37632220

RESUMO

Young adults have increasing genomic testing opportunities; however, little is known about how equipped they feel about making decisions to learn personal genomic information. We conducted qualitative interviews with 19 young adults, ages 18-21 years old, enrolled in a research study where they made decisions about learning personal genomic risk for developing preventable, treatable, and adult-onset conditions and carrier status for autosomal recessive conditions. Participants had the option to include a parent in their study visit and the decision-making process. The goal of this project was to explore young adults' reasons for involving or not involving a parent in the study and to assess young adults' perspectives about parental roles in their healthcare. Nine participants included a parent in the study and ten did not include a parent. Eleven participants received genomic test results before the interview, while eight participants had not yet received their results at the time of the interview. The study team developed a coding guide and coded interview transcripts inductively and deductively using an interpretive descriptive-analytic approach. Logistical issues dominated solo participants' reasons for not involving a parent in the study, whereas those who involved a parent often cited a close relationship with the parent and the parent's previous involvement in the participant's healthcare as reasons for involving them. Both groups of participants described gradually transitioning to independent healthcare decision-making with age and felt their comfort in medical decision-making depends on the severity of and their familiarity with the situation. Participants recommended that future genomic researchers or clinicians give young adults the option to involve a parent or friend as a support person in research or clinical visits. Although young adults may have different journeys toward independent healthcare decision-making, some may benefit from continued parental or peer involvement after reaching the age of legal adulthood.

4.
J Empir Res Hum Res Ethics ; 18(4): 278-283, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37491850

RESUMO

To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent decision-making, adolescents appreciated exercising independence, while parents valued both adolescent and parental independence. Joint decision-making allowed each to hear the other's viewpoints. Some found joint decision-making irrelevant but recognized it might help others. Overall, adolescents and parents had similar reasons for finding the two-step decision-making process helpful. Our findings support using such a process for engaging parents and adolescents in challenging research and clinical decisions.


Assuntos
Tomada de Decisões , Pais , Humanos , Adolescente , Genômica
5.
Transgend Health ; 8(2): 113-123, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37013094

RESUMO

Purpose: Transgender and gender-diverse (TGD) individuals and their families face numerous challenging decisions. To better understand their decision processes, we conducted a scoping review of the existing literature and of decision-support tools in use at pediatric gender-care clinics. Methods: We searched PubMed, EMBASE, Scopus CINAHL, PsychINFO, and EBM Reviews for studies that were original research focused on decisions, decision making, or decision support for TGD individuals and/or their families. All studies were reviewed for inclusion by at least two researchers. Additionally, we reviewed clinical tools used to support decision making by TGD youth and their families. Results: We retrieved 3306 articles. Thirty-two met criteria for data extraction. Studies focused on three major decisions: gender-confirming surgery, fertility preservation, and gender-affirming hormone therapy. Several themes that cut across clinical topics emerged: decision-making processes, decision-making roles, and sources of decision support. Only three articles focused on decision-support interventions, two of which discussed development of support tools and one evaluated a class designed to help with surgical decision making. None of the clinical tools reviewed met criteria for a decision aid. Conclusions: There is a dearth of studies related to decision support interventions, an absence validated by the resources currently in clinical use. This scoping review suggests an opportunity for the development of tools to aid in the decision-making processes for TGD youth and their families.

6.
Gastroenterology ; 165(1): 149-161.e7, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37004887

RESUMO

BACKGROUND & AIMS: Tumor necrosis factor inhibitors, including infliximab and adalimumab, are a mainstay of pediatric Crohn's disease therapy; however, nonresponse and loss of response are common. As combination therapy with methotrexate may improve response, we performed a multicenter, randomized, double-blind, placebo-controlled pragmatic trial to compare tumor necrosis factor inhibitors with oral methotrexate to tumor necrosis factor inhibitor monotherapy. METHODS: Patients with pediatric Crohn's disease initiating infliximab or adalimumab were randomized in 1:1 allocation to methotrexate or placebo and followed for 12-36 months. The primary outcome was a composite indicator of treatment failure. Secondary outcomes included anti-drug antibodies and patient-reported outcomes of pain interference and fatigue. Adverse events (AEs) and serious AEs (SAEs) were collected. RESULTS: Of 297 participants (mean age, 13.9 years, 35% were female), 156 were assigned to methotrexate (110 infliximab initiators and 46 adalimumab initiators) and 141 to placebo (102 infliximab initiators and 39 adalimumab initiators). In the overall population, time to treatment failure did not differ by study arm (hazard ratio, 0.69; 95% CI, 0.45-1.05). Among infliximab initiators, there were no differences between combination and monotherapy (hazard ratio, 0.93; 95% CI, 0.55-1.56). Among adalimumab initiators, combination therapy was associated with longer time to treatment failure (hazard ratio, 0.40; 95% CI, 0.19-0.81). A trend toward lower anti-drug antibody development in the combination therapy arm was not significant (infliximab: odds ratio, 0.72; 95% CI, 0.49-1.07; adalimumab: odds ratio, 0.71; 95% CI, 0.24-2.07). No differences in patient-reported outcomes were observed. Combination therapy resulted in more AEs but fewer SAEs. CONCLUSIONS: Among adalimumab but not infliximab initiators, patients with pediatric Crohn's disease treated with methotrexate combination therapy experienced a 2-fold reduction in treatment failure with a tolerable safety profile. CLINICALTRIALS: gov, Number: NCT02772965.


Assuntos
Metotrexato , Inibidores do Fator de Necrose Tumoral , Criança , Humanos , Feminino , Adolescente , Masculino , Metotrexato/efeitos adversos , Adalimumab/efeitos adversos , Anticorpos Monoclonais/efeitos adversos , Infliximab/efeitos adversos , Fator de Necrose Tumoral alfa , Resultado do Tratamento
7.
J Adolesc Health ; 72(3): 452-459, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36535868

RESUMO

PURPOSE: Due to the intertwining of medical and social decision-making, new approaches to shared decision-making are likely needed for supporting decisions related to the care of transgender and gender-diverse (TGD) adolescents. Prior to developing decision support interventions for TGD youth, a decision support needs assessment must be completed. METHODS: Self-identified TGD youth, family members of TGD youth, clinicians caring for this population, and community advocates participated in one of six group level assessments (GLAs). GLA is a structured, participatory qualitative method that engages diverse groups of stakeholders in generating and evaluating ideas on the topic of interest. Upon completion of all GLAs, a survey was developed and distributed to GLA participants inviting them to rank ideas generated during the GLAs. RESULTS: Six major themes emerged from the GLAs regarding decision support needs, including: improving healthcare provider skills and education, increasing access to support outside the healthcare system, strengthening community and societal support, developing special information resources, supporting youth in leading decision-making about transition, and modifying the healthcare system. In the follow-up survey, improving healthcare provider skills and education was the most commonly chosen top priority. DISCUSSION: Participants identified decision support needs for TGD youth and their families that were mostly distinct from traditional decision support approaches. Participants' focus on the need to improve healthcare provider skills and education provides an opportunity to couple gender-focused education with shared decision-making skills, an approach that may be more sustainable than tools for specific decisions.


Assuntos
Pessoas Transgênero , Transexualidade , Humanos , Adolescente , Avaliação das Necessidades , Identidade de Gênero , Assistência Centrada no Paciente
8.
PEC Innov ; 12022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36532300

RESUMO

Objective: To describe the development, implementation, and revision of a video to provide information about genomic testing and the return of genomic research results to adolescents and parents. Methods: Formative, community-engaged research was conducted in three stages: development, implementation, and revision. Existing research participant advisory groups were used for focus groups and convenience sampling was used for interviews. Participants included parents, young adults without children, and adolescents. Transcripts of recorded sessions were used for formative analysis. Results: Video was the preferred format for delivering genomic testing information to adolescents during the development stage. During implementation, adolescents identified video length as an impediment to recall. During the revision stage, participants preferred the video in separate short segments, supported plan to require only one short video and leaving other short videos optional. Participants were divided on whether the required short video provided enough information, but all participants reported that watching additional videos would not have changed their decisions about receiving test results. Conclusion: Genomic education videos should be brief (<4 mins) to improve the odds that participants will view the entirety of any required video. Innovation: The development of participant materials should incorporate plans for monitoring implementation and plans for revising materials.

9.
Health Expect ; 25(6): 3105-3113, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36161973

RESUMO

INTRODUCTION: This pilot, randomized controlled trial aimed to evaluate the usability, among adolescents and young adults (AYAs) with ulcerative colitis (UC), of a web-based tool ('iBDecide') designed to facilitate shared decision making (SDM). METHODS: AYAs with UC (n = 35) were randomized to intervention (iBDecide, n = 14) and control (n = 12) arms before a scheduled clinic visit. We measured the usability of iBDecide, SDM, preferred decision-making style, decision conflict and intervention use. RESULTS: Participants in the intervention group found iBDecide easy to use and agreed that it made them feel ready to participate in decision making and that they would use it to prepare for appointments. There were 130 visits to iBDecide, lasting on average 3 min, 41 s. The medication and nutrition trackers were among the most-viewed pages. Pages specifically designed to facilitate SDM were viewed only four times. Across groups, too few participants reported making decisions during clinic visits for decision-related measures to be reported. CONCLUSIONS: This pilot trial provides evidence for the usability of iBDecide and guidance for developing a larger-scale trial of a combined web-based and in-clinic SDM intervention. Overall, iBDecide shows promise in engaging AYAs with UC in SDM and condition management. PATIENT OR PUBLIC CONTRIBUTION: Patients, specifically AYAs with UC, and healthcare providers were involved in the design of this study's intervention, iBDecide. Additionally, the research team, from study conception to manuscript writing, included a young adult with inflammatory bowel disease. CLINICAL TRIAL REGISTRATION: This study was registered at clinicaltrials.gov (NCT04207008).


Assuntos
Colite Ulcerativa , Tomada de Decisão Compartilhada , Adulto Jovem , Humanos , Adolescente , Participação do Paciente , Tomada de Decisões , Colite Ulcerativa/terapia , Projetos Piloto
10.
Acad Pediatr ; 22(8): 1503-1509, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35907446

RESUMO

OBJECTIVE: Shared decision making (SDM) is recommended for common pediatric conditions; however, there are limited data on measures of SDM in pediatrics. This study adapted the SDM Process scale and examined validity and reliability of the scale for attention-deficit/hyperactivity disorder (ADHD) treatment decisions. METHODS: Cross-sectional survey of caregivers (n = 498) of children (aged 5-13) diagnosed with ADHD, who had made a decision about ADHD medication in the last 2 years. Surveys included the adapted SDM Process scale (scores range 0-4, higher scores indicate more SDM), decisional conflict, decision regret, and decision involvement. Validity was assessed by testing hypothesized relationships between these constructs. A subset of participants was surveyed a week later to assess retest reliability. RESULTS: Pediatric Caregiver version of the SDM Process scale (M = 2.8, SD = 1.05) showed no evidence of floor or ceiling effects. The scale was found to be acceptable (<1% missing data) and reliable (intraclass correlation coefficient = 0.74). Scores demonstrated convergent validity, as they were higher for those without decisional conflict than those with decisional conflict (2.93 vs 2.46, P < .001, d = 0.46), and higher for caregivers who stated they made the decision with the provider than those who made the decision themselves (3.0 vs 2.7; P = .003). Higher scores were related to less regret (r = -0.15, P < .001), though the magnitude of the relationship was small. CONCLUSIONS: The adapted Pediatric Caregiver version of the SDM Process scale demonstrated acceptability, validity and reliability in the context of ADHD medication decisions made by caregivers of children 5-13. Scores indicate pediatricians generally involve caregivers in decision making about ADHD medication.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Tomada de Decisão Compartilhada , Criança , Humanos , Cuidadores , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Reprodutibilidade dos Testes , Tomada de Decisões , Estudos Transversais , Inquéritos e Questionários , Participação do Paciente
11.
Patient Educ Couns ; 105(5): 1075-1081, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34629231

RESUMO

OBJECTIVE: We conducted a pre-post pilot trial to determine the feasibility and acceptability of a multi-component intervention (pre-clinic letter, shared decision making cards and follow-up phone call) designed to facilitate SDM in pediatric inflammatory bowel disease (IBD). METHODS: We recruited physicians (n = 11) caring for IBD patients and families (n = 36) expected to discuss anti-tumor necrosis treatment. We measured feasibility and acceptability of the intervention, observed SDM, perceived SDM, decision conflict, and regret. Medical records were used to assess clinical outcomes, time to decision and adherence. We compared all outcomes between the usual care and intervention study arms. RESULTS: Two out of three intervention components were feasible. Visit length increased significantly in the intervention arm. Parents and patients rated the intervention as acceptable, as did most physicians. The intervention was associated with a higher-level of observed SDM. There was no difference perceived SDM, decision conflict, regret or quality of life outcomes between arms. Physician global assessment improved over time in the intervention arm. CONCLUSIONS: This pilot trial provides important guidance for developing a larger scale trial of a modified intervention. PRACTICE IMPLICATIONS: Overall, our intervention shows promise in supporting SDM and engaging both parents and patients in pediatric IBD decisions.


Assuntos
Tomada de Decisão Compartilhada , Doenças Inflamatórias Intestinais , Criança , Tomada de Decisões , Humanos , Doenças Inflamatórias Intestinais/tratamento farmacológico , Participação do Paciente , Projetos Piloto , Qualidade de Vida , Inibidores do Fator de Necrose Tumoral
12.
MDM Policy Pract ; 6(2): 23814683211039468, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34734118

RESUMO

A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and clinical experiences using formal presentations and moderated discussion and was attended by 43 people. Presentations focused on the roles of pediatric patients in decision making, caregiver decision making for a child with complex medical needs, caregiver involvement in advanced care planning, and the inclusion of spillover effects in economic evaluations. The moderated discussion, summarized in this article, highlighted existing resources and gaps in intergenerational decision making in four areas: decision aids, economic evaluation, participant perspectives, and measures. Intergenerational decision making is an understudied and poorly understood aspect of medical decision making that requires particular attention as our society ages and technological advances provide new innovations for life-sustaining measures across all stages of the lifespan.

13.
Patient Educ Couns ; 104(7): 1575-1582, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33386187

RESUMO

OBJECTIVE: Using a nested, cluster-randomized trial, we tested the hypothesis that a shared decision-making intervention, as part of consent, would improve study-related knowledge. METHODS: We developed a shared decision-makingintervention then randomized sites in a clinical trial to intervention or control (standard consent). We collected participants' knowledge (primary outcome) and decisional support data. Other data came from a clinical registry and research coordinator surveys. We compared outcomes between study arms using generalized estimating equation models, accounting for clustering. We used qualitative description to understand variation in intervention use. RESULTS: 265 individuals, from 34 sites, enrolled in the parent trial during our study period. Of those, 241 participants completed our survey. There was no knowledge difference between arms (mean difference = 0.56 (95 %CI: -3.8, 4.9)). Both groups had a considerable number of participants with misunderstandings. We also found no difference for decisional support (mean difference = 1.5 (95 %CI: -1.8, 4.8)) or enrollment rate between arms. Clinician use of the intervention varied between sites. CONCLUSIONS: We found no differences in outcomes but demonstrated the feasibility and acceptability of incorporating a shared decision-making intervention into consent. PRACTICE IMPLICATIONS: Future work should consider adapting our intervention to other trials and more robust measurement strategies.


Assuntos
Tomada de Decisão Compartilhada , Tomada de Decisões , Humanos , Consentimento Livre e Esclarecido , Conhecimento , Inquéritos e Questionários
14.
Child Care Health Dev ; 47(2): 208-217, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33274460

RESUMO

BACKGROUND: Youth with chronic illnesses and their parents make complex medical decisions and also need to develop medical decision-making skills for transition of care to adult care. The use of inclusive (e.g. 'we decided …') and exclusive (e.g. 'they decided …') language in youth and parents' medical decision-making experiences provides insights into perceptions of engagement. This study assessed youth and parents' perceptions of engagement in medical decision-making about biologic therapy. METHODS: This exploratory mixed-methods secondary analysis of semistructured interview data included youth with juvenile idiopathic arthritis (JIA) and Crohn's disease (CD) and parents. Iterative qualitative coding of interviews generated themes. Exploratory analyses of variance (ANOVAs) and analyses of covariance (ANCOVAs) investigated differences in language use between youth and parents. RESULTS: Parents used more inclusive language in perceptions of medical decision-making experiences than youth, which exploratory analyses found significant (p < 0.05). Youth used more exclusive language than parents in perceptions of medical decision-making. CONCLUSION: This research suggests that youth with chronic illnesses perceived limited engagement in medical decision-making, with parents perceiving higher engagement. This presents challenges for youth as they prepare for the transition to adult care. Future research should assess how inclusive and exclusive language use impacts psychosocial and health outcomes.


Assuntos
Tomada de Decisões , Idioma , Adolescente , Adulto , Terapia Biológica , Tomada de Decisão Clínica , Humanos , Pais
15.
MDM Policy Pract ; 5(2): 2381468320940708, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32685687

RESUMO

Purpose. To understand the medical decision support needs specific to adolescents and young adults (AYAs) with ulcerative colitis (UC) and inform development of a decision support tool addressing AYAs' preferences. Methods. We conducted focus groups with AYAs with UC and mentors from a pediatric inflammatory bowel disease clinic's peer mentoring program. Focus groups were led by a single trained facilitator using a semistructured guide aimed at eliciting AYAs' roles in medical decision making and perceived decision support needs. All focus groups were audio recorded, transcribed, and coded by the research team. Data were analyzed using content analysis and the immersion crystallization method. Results. The facilitator led six focus groups: one group with peer mentors aged 18 to 24 years, three groups with patients aged 14 to 17 years, and two groups with patients aged 18 to 24 years. Decision timing and those involved in decision making were identified as interacting components of treatment decision making. Treatment decisions by AYAs were further based on timing, location (inpatient v. outpatient), and family preference for making decisions during or outside of clinic. AYAs involved parents and health care providers in medical decisions, with older participants describing themselves as "final decision makers." Knowledge and experience were facilitators identified to participating in medical decision making. Conclusions. AYAs with UC experience changes to their roles in medical decisions over time. The support needs identified will inform the development of strategies, such as decision support tools, to help AYAs with chronic conditions develop and use skills needed for participating in medical decision making.

16.
Mayo Clin Proc Innov Qual Outcomes ; 4(2): 183-189, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32280929

RESUMO

This article reviews the current uses of shared decision making in gastroenterology and discusses additional areas of opportunity for shared decision making, especially in the area of functional gastrointestinal disorders. PubMed, MEDLINE, and Cochrane library databases were searched for articles published during a 10-year period from January 1, 2007, through December 31, 2017. Search terms included shared decision making and gastroenterology, shared decision making in gastrointestinal disease, shared decision making in functional GI disorders, and shared decision making and irritable bowel syndrome. Studies were not included in this review when a health care professional other than a gastroenterologist was involved, eg, an article that reported shared decision making regarding the use of radiation therapy in a patient with advanced rectal cancer in which the health care professional helping to make the decision was an oncologist.

17.
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.

18.
J Adolesc Health ; 65(2): 274-279, 2019 08.
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.


Assuntos
Tomada de Decisões , Disforia de Gênero , Hormônios Gonadais/administração & dosagem , Pais/psicologia , Pessoas Transgênero/psicologia , Adolescente , Adulto , Feminino , Pessoal de Saúde , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa , Testosterona
19.
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 Infantil/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
20.
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.


Assuntos
Artrite Juvenil/tratamento farmacológico , Tomada de Decisões , Doenças Inflamatórias Intestinais/tratamento farmacológico , Participação do Paciente , Fator de Necrose Tumoral alfa/uso terapêutico , Adolescente , Adulto , Idoso , Atitude do Pessoal de Saúde , Estudos de Casos e Controles , Feminino , Gastroenterologia/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Pais/psicologia , Relações Médico-Paciente , Reumatologia/métodos , Inquéritos e Questionários
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