Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 35
Filtrar
1.
J Pediatr Gastroenterol Nutr ; 76(3): 319-324, 2023 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-36490378

RESUMO

OBJECTIVE: Adolescents and young adults with inflammatory bowel disease (IBD) are in vulnerable positions for lapses in care as they transition from pediatric to adult practices. As biologic agents become a mainstay of treatment for these patients, it is important to ensure that responsibility for tasks related to scheduling, remembering, and transporting to infusion appointments for intravenous biologics are mastered prior to transition. This ensures preservation of therapy and disease control. METHODS: We surveyed 236 adolescents and young adults with IBD aged 13-22 years receiving infusion-based biologic therapy at outpatient infusion visits at Boston Children's Hospital from February to May 2021. The questionnaire asked the ideal and actual ages that patients take responsibility for scheduling their infusion appointments, remembering their infusion appointments, and transporting to their infusion appointments. RESULTS: We received 168 completed survey questionnaires. The ideal reported mean age for independence was 17.9 ± 1.7 years across all 3 tasks. Among 80 patients 18 years and older, 44 (55%) were independently scheduling their appointments, 63 (79%) were keeping track of their appointments, and 43 (54%) were getting to their appointments independently. CONCLUSIONS: Adolescent and young adult patients with IBD ideally would independently manage biologic infusion related tasks prior to the age of 18 years, as this is the natural age that many move away from the homes of their parents/guardians. Our study demonstrates that just over half of patients 18 years or older independently manage their infusion appointments. This is an educational opportunity that has implications for health outcomes of patients with IBD.


Assuntos
Doenças Inflamatórias Intestinais , Autogestão , Adulto Jovem , Humanos , Adolescente , Criança , Adulto , Inquéritos e Questionários , Autocuidado , Doenças Inflamatórias Intestinais/terapia , Escolaridade
2.
J Pediatr Nurs ; 59: 103-109, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33845322

RESUMO

PURPOSE: The aim of this study was to establish content validity of a developmentally based assessment tool of readiness for medical independence for specialty providers. DESIGN AND METHODS: The validation process used expert panel evaluation to assess the items believed to measure the desired content in the nine age-based scales within the RAISE (Readiness Assessment of Independence for Specialty Encounters) tool. Experts in child development and transition rated items on relevance, clarity and developmental appropriateness via electronic survey. Statistical analyses included calculation of interrater agreement (IRA), content validity indices (CVIs), and factorial validity indices (FVI). RESULTS: A total of 135 items were rated by 36 experts. Mean I-CVIs for 123 items across nine developmental scales met criteria for retention, ranging from 0.76 (threshold) to 1.00 (excellent). Mean I-CVIs for all 25 items across the five psychosocial stressor scales met criteria for retention, ranging from 0.92 to 1.00 (excellent). CONCLUSIONS: Findings from the current content validation study suggest that items on the revised RAISE tool are relevant, clear, and developmentally-appropriate as rated by experts in the fields of child development and transition. The tool, consisting of age based scales (ages birth-2, 3-4, 5-6, 7-8, 9-11, 12-13, 14-15, 16-17, 18-21), is shown to have content validity of the retained items meeting criteria. PRACTICE IMPLICATIONS: With content validity of the RAISE tool established by experts, this developmentally based assessment tool can be integrated into practice to assist providers in educating patients around skills of medical independence which could improve transition outcomes.


Assuntos
Reprodutibilidade dos Testes , Criança , Humanos , Inquéritos e Questionários
3.
Clin Gastroenterol Hepatol ; 18(2): 276-289.e2, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31077824

RESUMO

Adolescents and young adults diagnosed with inflammatory bowel diseases (IBDs) in pediatric care are vulnerable during their transition to adult care. There are 6 core elements of transition from pediatric to adult IBD care. We identified gaps in this transition and make recommendations for clinical practice and research. There have been few studies of transition policy (core element 1) or studies that tracked and monitored patients through the transition (core element 2). Several studies have assessed transition readiness (core element 3), but instruments for assessment were not validated using important outcomes such as disease control, health care use, adherence, quality of life, or continuity of care. There have been no studies of best practices for transition planning (core element 4), including how to best educate patients and facilitate gradual shifts in responsibility. A small number of longitudinal studies have investigated transfer of care (core element 5), but these were conducted outside of the United States; these studies found mixed results in short- and intermediate-term outcomes after transition completion (core element 6). We discuss what is known about the transition from pediatric to adult care for IBD, make recommendations to improve this process, and identify areas for additional research.


Assuntos
Doenças Inflamatórias Intestinais , Transição para Assistência do Adulto , Adolescente , Criança , Humanos , Doenças Inflamatórias Intestinais/terapia , Qualidade de Vida , Estados Unidos , Adulto Jovem
4.
J Pediatr Gastroenterol Nutr ; 67(1): e6-e10, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29401085

RESUMO

OBJECTIVES: Transition planning for children with chronic disease includes the development of independence in many self-management tasks. Conditions that depend on diet have distinct skill sets not well assessed by the traditional transition-readiness tools. There has been literature that describes age-appropriate skill acquisition for diabetes and food allergy patients. There are, however, no age-appropriate benchmarks established for celiac disease (CD). METHODS: CD experts (including physician, nurse, dietician, social worker, patient, and parent) created a list of celiac-related tasks, which formed the basis of the survey. Patients with CD, and their parents, were recruited from outpatient celiac clinic and support groups, and invited to report the age each task was mastered. RESULTS: Respondents included 204 patients and 155 parents. Mean age was 12 years (standard deviation 4.6) with average of 4 years since diagnosis. The earliest tasks were mastered by a median age of 8 years, such as recognizing GF as gluten-free, eating safely in a shared space and recognizing basic unsafe foods. Describing the effects of eating gluten or explaining CD to a friend or stranger occurred around age 10. Asking about gluten-free preparation in a restaurant, and identifying gluten-free medications or vitamins was mastered around age 12, whereas tasks involved with safe domestic travel or assessing risk in a job environment occurred between 14 and 16. The interquartile range was about 4 years for each question. No significant difference seen between patient and parent reports. CONCLUSIONS: This novel patient-centered celiac skill list may improve anticipatory guidance and accelerate self-management skills.


Assuntos
Benchmarking , Doença Celíaca/dietoterapia , Dieta Livre de Glúten , Conhecimentos, Atitudes e Prática em Saúde , Autocuidado/normas , Adolescente , Fatores Etários , Criança , Emprego , Feminino , Humanos , Masculino , Restaurantes , Habilidades Sociais , Cuidado Transicional , Viagem
5.
Pediatr Blood Cancer ; 64(2): 346-352, 2017 02.
Artigo em Inglês | MEDLINE | ID: mdl-27463688

RESUMO

BACKGROUND: Pediatric oncologists are responsible for ensuring that adolescent and young adult (AYA) childhood cancer survivors have the knowledge and skills necessary to manage their follow-up care in adult healthcare systems. PROCEDURES: To describe transition practices and barriers to transfer, we electronically surveyed U.S. Children's Oncology Group members: 507/1449 responded (35%) and 347/507 (68%) met eligibility criteria. RESULTS: Of 347 respondents, 50% are male, median years in practice 10 (range 5-22), 37% practice in freestanding children's hospitals. Almost all care for survivors up to age 21 years (96%), 42% care for survivors over age 25 years, and only 16% over age 30 years. While 66% of oncologists reported providing transition education to their patients, very few (8%) reported using standardized transition assessments. The most frequent barriers to transfer were perceived attachment to provider (91%), lack of adult providers with cancer survivor expertise (86%), patient's cognitive delay (81%), or unstable social situation (80%). Oncologists who continue to care for patients older than 25 years are more likely to perceive parents' attachment to provider (P = 0.037) and patients' social situation as barriers to transfer (P = 0.044).  Four themes emerged from a content analysis of 75 respondents to the open-ended question inviting comments on transition/transfer practices: desire for flexible transfer criteria; providers as barriers; provider lack of transition knowledge, skills, and resources; and desire for collaboration. CONCLUSIONS: Although most pediatric oncologists reported transferring AYA cancer survivors to adult care and providing some transition education, they endorse deficits in transition skills, emotional readiness, and institutional resources.


Assuntos
Continuidade da Assistência ao Paciente/normas , Neoplasias/terapia , Oncologistas , Planejamento de Assistência ao Paciente , Padrões de Prática Médica/normas , Sobreviventes , Transição para Assistência do Adulto/normas , Adolescente , Adulto , Fatores Etários , Feminino , Seguimentos , Humanos , Masculino , Neoplasias/patologia , Pediatria , Médicos , Prognóstico , Qualidade da Assistência à Saúde , Taxa de Sobrevida , Adulto Jovem
6.
Med Teach ; 39(2): 147-152, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-28024434

RESUMO

The authors share twelve practical tips on writing a case that engages learners in active learning and discussion. They first advise that, during the initial preparation of the case, authors should (1) identify the case goals and objectives, and (2) identify the level of the learners. When writing the case, authors should (3) use active and colorful language; (4) use patients' own descriptions rather than medical language; (5) allow the learners to interpret data themselves; (6) allow for natural discovery rather than presenting information chronologically; and (7) be realistic about interruptions in patient care. In addition, case authors should pay attention to methods that enhance discussion by (8) creating barriers to diagnostic or treatment options; (9) promoting questions and discussion over answers; (10) using cues to assure discussion flow and knowledge exploration; and (11) omitting details or inserting informational distractors. Finally, well-crafted questions are essential during the case presentation to engage learners in higher-order thinking; and to (12) stimulate curiosity and reflection.


Assuntos
Educação Médica/organização & administração , Aprendizagem , Ensino/organização & administração , Redação/normas , Educação Médica/normas , Objetivos , Humanos , Ensino/normas
7.
J Pediatr Gastroenterol Nutr ; 63(5): 488-493, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-27027904

RESUMO

OBJECTIVES: Transition and transfer to adult-oriented health care is an important yet challenging task for adolescents and young adults with chronic medical conditions. Transition practices vary widely, but a paucity of data makes determination of best practices difficult. We described North American pediatric gastroenterologists' preferences and present transition practice patterns and explored whether experience affected providers' perspectives. METHODS: An online survey was distributed via e-mail to members of the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition. Participation was voluntary and answers were anonymous. Quantitative and qualitative analysis was performed. RESULTS: Almost three quarters of the 175 respondents describe providing transition or self-care management education, but only 23% use structured readiness assessments. Most respondents (88%) report having age cutoffs above which they no longer accept new referrals, with the most common age being 18 years (57%). One third report the ability to provide age-appropriate care to patients older than 21 years. Only 6% indicate that their practice or institution should provide care for individuals older than 25 years. Many (63%) indicate that their practice or institution has a policy regarding age of transfer, but most (79%) are flexible. Provider preferences for triggers to transfer to adult care diverge widely between age, milestones, and comorbidities. Overall, parent (81%) and patient (74%) attachment to pediatric health care providers are cited as the most common barriers to transition. CONCLUSIONS: Preferences and practices surrounding transition preparation and transfer to adult care vary widely, reflecting continued uncertainty regarding optimal transition strategies.


Assuntos
Padrões de Prática Médica/estatística & dados numéricos , Transição para Assistência do Adulto/estatística & dados numéricos , Adolescente , Adulto , Criança , Estudos Transversais , Feminino , Gastroenterologia/métodos , Humanos , Masculino , Pediatria , Médicos , Inquéritos e Questionários , Adulto Jovem
8.
J Pediatr Gastroenterol Nutr ; 63(5): 494-499, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-27280748

RESUMO

OBJECTIVE: Transition readiness assessment has focused attention on adolescent knowledge and skills, but data-driven benchmarks have not been established. METHODS: Patients with inflammatory bowel disease (IBD), ages 25 to 50 years, attending an outpatient gastroenterology clinic, were recruited to complete a voluntary, confidential survey asking patients to recall medications and potential side effects, and to rate their degree of independence performing health maintenance tasks. RESULTS: The 141 respondents (48% response rate) had mean age of 36 years with median disease duration of 11 years. They were 60% female, 54% had Crohn disease, and 23% were diagnosed before age 18. Nearly all patients were fully independent answering doctor's questions during the visit (93%) and scheduling office visits (92%). Excluding pharmacy pick up, full independence seen in only 57%, whereas 16% significantly delegated tasks. No differences by sex, disease type, medication class, age at disease onset, or disease duration were found across levels of self-management. Almost all (97%) respondents could recall medication name, whereas fewer were able to recall dose (63%) or frequency (65%). Side effect knowledge was poor; among 81 patients on a biologic or immunomodulator, only 17 (21%) cited cancer and 22 (27%) cited infection. CONCLUSIONS: Adolescent IBD transition programs now have empirical data from the present study about adult benchmarks for independence in self-management skills. Further research can establish which skills correlate with medication adherence and active collaboration with the medical team. The present study also exposes important gaps in medication risk knowledge and may allow improved patient education for subgroups of adult patients with IBD.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Doenças Inflamatórias Intestinais/tratamento farmacológico , Adesão à Medicação/estatística & dados numéricos , Autocuidado/estatística & dados numéricos , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
9.
J Pediatr Orthop ; 36(6): e75-80, 2016 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26296228

RESUMO

BACKGROUND: Surgical specialties are underrepresented in the discussions regarding transition and transfer of patients to adult care. We sought the pediatric orthopaedic perspective on types of patients seen into adulthood, age cut-offs, triggers for transfer, and barriers to transition. We examined provider demographic factors that may influence perspectives. METHODS: An internet-based survey was sent to all members of the Pediatric Orthopaedic Society of North America and the Pediatric Orthopaedic Practitioner Society. Responses were voluntary and anonymous. RESULTS: Response rates were 27% for the Pediatric Orthopaedic Society of North America and 24% for the Pediatric Orthopaedic Practitioner Society. Most respondents (70%) care for patients over the age of 25 years and many (35%) for patients over the age of 40. The most common conditions cared for were neuromuscular and congenital disorders. Respondents who worked in a fully salaried model reported caring for fewer of these adult patients compared with those working in other types of payment structure (P<0.001). Respondents working in free-standing children's hospitals reported fewer patients over 30 years old compared with nonchildren's hospital settings (P<0.001). There were no significant differences between profit-based and nonprofit settings. The top triggers for transfer to adult providers were: (1) adult comorbidities; (2) transition to medical specialist; and (3) institutional policy. The top barriers to transfer were: (1) lack of qualified adult providers; (2) institutional policy; and (3) on-going surgical issues. CONCLUSIONS: Many providers care for older patients, often using external triggers for transfer to adult care. Financial considerations may need to be further explored. Variation in care may be aided by national society guidelines. LEVEL OF EVIDENCE: Level III-survey research.


Assuntos
Barreiras de Comunicação , Doenças Neuromusculares , Ortopedia , Pediatria , Transição para Assistência do Adulto , Adolescente , Adulto , Atitude do Pessoal de Saúde , Feminino , Pesquisas sobre Atenção à Saúde , Hospitais Pediátricos/estatística & dados numéricos , Humanos , Masculino , Massachusetts/epidemiologia , Avaliação das Necessidades , Doenças Neuromusculares/epidemiologia , Doenças Neuromusculares/terapia , Ortopedia/métodos , Ortopedia/estatística & dados numéricos , Pediatria/métodos , Pediatria/estatística & dados numéricos , Transição para Assistência do Adulto/normas , Transição para Assistência do Adulto/estatística & dados numéricos
10.
J Pediatr Gastroenterol Nutr ; 60(4): 481-5, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25419680

RESUMO

OBJECTIVES: Gender equality in the workplace has not been described in pediatric gastroenterology. METHODS: An electronic survey that explored perceptions of career parity, work-life balance, and workplace harassment was sent to all members of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. Reponses were anonymous. RESULTS: Of the 303 respondents (21%), there was an even distribution across geographic region, age, and gender (54% men). Gender affected perception of salary and promotion; 46% of men but only 9% of women feel that "women earn the same as men" (P < 0.001). Similarly, 48% of men but only 12% of women feel that "women rise at the same rate as men" (P < 0.001). Both genders of academic practice respondents, compared with other practice models, perceived men were promoted more quickly than women (P = 0.008). Women had higher dissatisfaction with mentoring than men (29% vs 13%, P = 0.03). Significantly more men than women reported spouses with "flexible jobs" (35% vs 14%, P < 0.001). Having a spouse with "flexible job" or having children (preschool or school age), however, did not affect satisfaction with work-life balance for either gender. Overall, women are more likely to be dissatisfied with work-life balance than men (P = 0.046). CONCLUSIONS: Satisfaction with work-life balance is lower among women versus men pediatric gastroenterologists, but does not correlate with flexibility of spouse's job or caring for young children. Gender-divergent perception of promotion, parity of compensation, and mentoring requires further investigation.


Assuntos
Atitude , Emprego , Gastroenterologia , Satisfação no Emprego , Médicos , Sexismo , Direitos da Mulher , Adulto , Bullying , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Poder Familiar , Pediatria , Percepção , Salários e Benefícios , Inquéritos e Questionários , Trabalho
11.
J Pediatr Gastroenterol Nutr ; 68(3): 295, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30601365
12.
J Pediatr Gastroenterol Nutr ; 59(2): 221-4, 2014 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-24762453

RESUMO

OBJECTIVE: Adolescent patients with chronic health conditions must gradually assume responsibility for their health. Self-management skills are needed for a successful transfer from adolescent to adult health care, but the development of these skills could be resource intensive. Pediatric providers are already instrumental in teaching patients about their health and may improve these skills. The aim of the study was to evaluate whether informal education of pediatric providers regarding transition improves inflammatory bowel disease (IBD) patient self-management skills. METHODS: Consecutive patients with IBD older than 10 years who presented to the outpatient setting were administered a survey regarding self-management behaviors in 2008 and 2011. During this time, several conferences on transition were presented to the providers. RESULTS: In 2008, 294 patients completed the survey (82%) compared with 121 patients (89%) in 2011. The patient groups were comparable with respect to sex (boys 50% vs 42%), mean age (16.7 vs 16.2 years), and type of IBD (Crohn 68% vs 66%). The 13- to 15-year-olds reported calling in refills (11%, 8%, respectively), scheduling clinic appointment (0, 1%), preparing questions (13%, 5%), and taking the main role in talking during clinic visits (15%, 24%). The 16- to 18-year-olds reported calling in refills (13%, 27%), scheduling clinic appointments (9%, 6%), preparing questions (9%, 16%), and taking the main role in talking in clinic visits (36%, 45%). Responsibility for behaviors gradually increases with age, but did not differ significantly between 2008 and 2011. CONCLUSIONS: Increasing awareness around transition readiness for pediatric providers had an insignificant effect on the self-management skills of patients with IBD. A more formal or structured approach is likely required to improve transition skills in adolescent patients.


Assuntos
Conscientização , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/educação , Doenças Inflamatórias Intestinais , Educação de Pacientes como Assunto , Autocuidado , Adolescente , Adulto , Criança , Coleta de Dados , Feminino , Humanos , Masculino , Pediatria , Adulto Jovem
13.
Pediatr Nurs ; 40(3): 113-20, 142, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25134224

RESUMO

The importance of successfully transitioning pediatric patients to adult care is increasingly recognized as more children with chronic diseases are living to adulthood. The aim of this study was to investigate the current state of provider perceptions across disciplines regarding transition of pediatric patients to adult care. Focus groups made up of providers of various roles and experience levels were conducted. A total of six major themes were identified. We conclude that pediatric providers share common concerns about transitioning pediatric patients to adult care. We reinforce many of the issues raised in the literature and also discuss a sense of professional ego that was identified as a barrier to successful transition, which is not widely reported in other studies.


Assuntos
Continuidade da Assistência ao Paciente , Papel do Profissional de Enfermagem , Recursos Humanos de Enfermagem/psicologia , Adolescente , Adulto , Criança , Grupos Focais , Humanos , Adulto Jovem
14.
Gastroenterol Clin North Am ; 52(3): 629-644, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37543405

RESUMO

Health care transition from pediatric to adult care has been identified as a priority in the field of medicine, especially for those with chronic illnesses such as inflammatory bowel disease (IBD). Although there is no universally accepted model of preparing the pediatric patient for transfer to adult care, transition care is best accomplished in a structured and consistent manner. The authors highlight concepts for optimizing the transition of care for patients with IBD, which include setting expectations throughout adolescence with the gradual nurturing of self-management skills, preparing and assessing of readiness for transfer, and enacting a successful transfer to adult care.


Assuntos
Doenças Inflamatórias Intestinais , Transição para Assistência do Adulto , Adulto , Adolescente , Humanos , Criança , Doenças Inflamatórias Intestinais/terapia , Doença Crônica
15.
JMIR Pediatr Parent ; 5(2): e34466, 2022 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-35139484

RESUMO

BACKGROUND: Social media is used by young adult patients for social connection and self-identification. OBJECTIVE: This study aims to compare the social media habits of young adults with inflammatory bowel disease (IBD) and type 1 diabetes (T1D). METHODS: This is a cross-sectional study of subjects from Boston Children's Hospital outpatient IBD and diabetes clinics. Patients above 18 years of age were invited to complete a brief anonymous survey, which asked about the various ways they use several social media platforms. RESULTS: Responses were received from 108 patients (92.5% response rate), evenly split across disease type. We found that 83% of participants spent at least 30 minutes per day on social media, most commonly on Instagram and Facebook. Although the content varied based on the platform, patients with IBD posted or shared content related to their disease significantly less than those with T1D (23% vs 38%, P=.02). Among Instagram users, patients with IBD were less likely to engage with support groups (22% vs 56%, P=.04). Among Twitter users, patients with IBD were less likely to seek disease information (77% vs 29%, P=.005). Among Facebook users, patients with IBD were less likely to post about research and clinical trials (31% vs 65%, P=.04) or for information seeking (49% vs 87%, P=.003). Patients with IBD were also less likely to share their diagnosis with friends or family in person. CONCLUSIONS: Young adults with IBD were less willing to share their diagnosis and post about or explore the disease on social media compared to those with T1D. This could lead to a sense of isolation and should be further explored.

16.
J Am Coll Health ; 70(3): 940-947, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-32643555

RESUMO

ObjectiveTo examine the relationship between perceived effect of inflammatory bowel diseases (IBD) on high school academics and college planning on college adjustment. Participants: Participants (N = 97) were college students with IBD. Methods: Participants completed an online survey including the Student Adaptation to College Questionnaire and study-developed questions assessing the perceived impact of their diagnosis on their high school academics and college planning. Results: Most participants reported average college adjustment across domains, except personal-emotional adjustment with 47% of participants falling within the very low to low ranges. Nearly half reported IBD impacted their choice of college (49%). The impact of IBD on college planning was most consistently associated with domains of college adjustment. Conclusions: IBD severely impacts college planning, decision-making, and adjustment in college-bound youth. Perceiving that having a chronic illness impacts college planning may result in greater difficulty with academic adjustment, attachment to the institution, and social adjustment during college.


Assuntos
Doenças Inflamatórias Intestinais , Estudantes , Adolescente , Criança , Humanos , Doenças Inflamatórias Intestinais/psicologia , Ajustamento Social , Estudantes/psicologia , Inquéritos e Questionários , Universidades
17.
J Pediatr Gastroenterol Nutr ; 53(6): 641-5, 2011 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-21681113

RESUMO

OBJECTIVE: Adolescents with chronic illness need to develop skills to independently manage their own health. Knowledge of medication is an early step in this process. We explored which factors affect acquisition of medication knowledge in adolescents with inflammatory bowel disease (IBD). PATIENTS AND METHODS: Consecutive patients with IBD older than 10 years received a confidential survey at an outpatient visit including questions regarding medication name, dose, and adverse effects. Results were compared with the medical record. Demographic characteristics obtained included age, sex, disease duration, and type of IBD. RESULTS: Completed surveys were returned by 294 patients (65% of those approached). Overall, 95% of patients could name their medication and 54% could identify their correct dose. Of 95 patients receiving biologics, 88% could identify the medicine and 50% could report either dose or timing. Of 139 patients on immunomodulator therapy, 94% could name medicine and 68% reported correct dose. Sex, type, or duration of disease did not affect name or dose knowledge. Generally, older patients did not demonstrate better medication or dosage knowledge than younger patients, although there was a significant trend toward improved knowledge of side effects for older patients. However, <32% of all of the patients could report a single major medication side effect. CONCLUSION: Medication knowledge is an early stage of self-management, yet many adolescents cannot report the dose of IBD medications, nor know the side effects of immunosuppression. This finding persists into late adolescence, which has ramifications for patients as they separate from parents for college or work.


Assuntos
Gerenciamento Clínico , Conhecimentos, Atitudes e Prática em Saúde , Doenças Inflamatórias Intestinais/tratamento farmacológico , Adolescente , Criança , Doença Crônica , Feminino , Humanos , Masculino , Pacientes Ambulatoriais , Autocuidado , Inquéritos e Questionários , Adulto Jovem
18.
J Adolesc Health ; 68(5): 999-1005, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-32994123

RESUMO

PURPOSE: Research involving adolescent risk behaviors must balance data confidentiality with participant safety when risky behaviors are revealed. This report details a safety protocol and reports the experience of two contemporaneous studies that used it with variant safety thresholds. METHODS: We developed a safety protocol for research with adolescent patients and used it in two concurrent studies of adolescent patients, aged 14-18 years. Study "PC" recruited participants from a primary care adolescent medical clinic (N = 490), and Study "SP" recruited participants from subspecialty pediatric clinics (N = 434); both studies involved a similar self-administered assessment of health behaviors. The protocol sets thresholds for clinical intervention (positive safety flags) for past 3-month heavy alcohol consumption (Study PC: 10 or more drinks and Study SP: "binge-"level drinking), illicit drug use other than marijuana and alcohol in combination with a substance other than marijuana, and sets a positive screen for depression. We examined the rates of positive safety flags in both protocol settings, used significance testing to describe demographic differences between participants with and without positive flags in both studies, and described clinician experiences with protocol implementation. RESULTS: In studies PC/SP, .6%/8.8% of participants were flagged for heavy alcohol consumption, respectively; .2%/0% for illicit drug use, 2.2%/.7% for combination substance use, and 14.9%/4.8% for depression. Some clinicians found managing positive flags challenging, although both studies completed recruitment on time and without serious adverse events. CONCLUSIONS: The protocol was feasible in clinical settings. The findings and experiences documented in this report could be useful for future protocols.


Assuntos
Comportamento do Adolescente , Alcoolismo , Transtornos Relacionados ao Uso de Substâncias , Adolescente , Consumo de Bebidas Alcoólicas , Criança , Humanos , Assunção de Riscos
19.
Gastrointest Endosc ; 72(1): 13-8, 2010 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-20620271

RESUMO

BACKGROUND: Integrating procedural training by using computer-based endoscopic simulators (CBES) into gastroenterology fellowships may facilitate technical skill development, while posing no additional risk to patients. OBJECTIVE: The aim of our study was to survey pediatric gastroenterology fellows about their experiences with and perceptions of CBES as compared with actual procedures, prior to and after exposure to both types of endoscopic learning. DESIGN AND SETTING: All first-year trainees at Children's Hospital Boston (2003-2008) were invited to complete a written, pretraining questionnaire and then perform at least 10 each of CBES endoscopies and colonoscopies prior to performing actual procedures. Fellows completed a written, posttraining questionnaire after 4 months. MAIN OUTCOME MEASUREMENTS: Survey responses. RESULTS: All 25 first-year fellows (12 male, median age 30 years) over the 5-year period participated. Four months into their fellowships, fellows reported simulation to be helpful in increasing procedural skill and confidence. The number of sessions on the simulator was associated with reported increased colonoscopic skill and confidence (P = .032 and P = .007, respectively). All fellows reported it difficult to incorporate CBES into their work schedules. Only 28% of fellows reported performing 20 total CBES procedures, with most simulation sessions reportedly lasting less than 30 minutes. All participants rated faculty instruction with CBES as very helpful. LIMITATIONS: This was a single-site study of pediatric trainees and may be limited in generalizability. CONCLUSION: A few short sessions with CBES may be perceived as useful for endoscopic skill acquisition by pediatric gastroenterology trainees. Further exploration into how to assimilate CBES into busy gastroenterology training programs may be warranted.


Assuntos
Atitude do Pessoal de Saúde , Simulação por Computador , Endoscopia Gastrointestinal , Bolsas de Estudo , Gastroenterologia/educação , Modelos Anatômicos , Pediatria/educação , Adulto , Boston , Competência Clínica , Colonoscopia , Currículo , Desenho de Equipamento , Feminino , Hospitais Pediátricos , Humanos , Masculino , Inquéritos e Questionários
20.
J Pediatr Gastroenterol Nutr ; 48(1): 61-5, 2009 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-19172125

RESUMO

OBJECTIVES: Transition of patients with inflammatory bowel disease (IBD) from pediatric to adult providers requires preparation. Gastroenterologists for adult patients ("adult gastroenterologists") may have expectations of patients that are different from those of pediatric patients. We sought to explore the perspectives of adult gastroenterologists caring for adolescents and young adults with IBD, to improve preparation for transition. MATERIALS AND METHODS: A survey sent to 1132 adult gastroenterologists caring for patients with IBD asked physicians to rank the importance of patient competencies thought necessary in successful transition to an adult practice. Providers reported which problems occurred in patients with IBD transitioning to their own practice. Adult gastroenterologists were asked about medical and developmental issues that are unique to adolescence. RESULTS: A response rate of 34% was achieved. Adult gastroenterologists reported that young adults with IBD often demonstrated deficits in knowledge of their medical history (55%) and medication regimens (69%). In addition, 51% of adult gastroenterologists reported receiving inadequate medical history from pediatric providers. Adult providers were less concerned about the ability of patients to identify previous and current health care providers (19%), or attend office visits by themselves (15%). Knowledge of adolescent medical and developmental issues was perceived as important by adult gastroenterologists; however, only 46% felt competent addressing the developmental aspects of adolescents. CONCLUSIONS: For successful transition, adolescents and young adults with IBD need improved education about their medical history and medications. Pediatric providers need to improve communication with the receiving physicians. In addition, adult providers may benefit from further training in adolescent issues. Formal transition checklists and programs may improve the transition of patients with IBD from pediatric to adult care.


Assuntos
Desenvolvimento do Adolescente , Serviços de Saúde do Adolescente , Gastroenterologia , Doenças Inflamatórias Intestinais/terapia , Adolescente , Feminino , Humanos , Masculino , Pediatria , Prática Privada
SELEÇÃO DE REFERÊNCIAS
Detalhe da pesquisa