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1.
Am J Gastroenterol ; 117(6): 902-917, 2022 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-35442220

RESUMO

INTRODUCTION: Evidence about specific carbohydrate diet (SCD) for inflammatory bowel disease (IBD) is limited. We conducted 54 single-subject, double-crossover N-of-1 trials comparing SCD with a modified SCD (MSCD) and comparing each with the participant's baseline, usual diet (UD). METHODS: Across 19 sites, we recruited patients aged 7-18 years with IBD and active inflammation. Following a 2-week baseline (UD), patients were randomized to 1 of 2 sequences of 4 alternating 8-week SCD and MSCD periods. Outcomes included fecal calprotectin and patient-reported symptoms. We report posterior probabilities from Bayesian models comparing diets. RESULTS: Twenty-one (39%) participants completed the trial, 9 (17%) completed a single crossover, and 24 (44%) withdrew. Withdrawal or early completion occurred commonly (lack of response [n = 11], adverse events [n = 11], and not desiring to continue [n = 6]). SCD and MSCD performed similarly for most individuals. On average, there was <1% probability of a clinically meaningful difference in IBD symptoms between SCD and MSCD. The average treatment difference was -0.3 (95% credible interval -1.2, 0.75). There was no significant difference in the ratio of fecal calprotectin geometric means comparing SCD and MSCD (0.77, 95% credible interval 0.51, 1.10). Some individuals had improvement in symptoms and fecal calprotectin compared with their UD, whereas others did not. DISCUSSION: SCD and MSCD did not consistently improve symptoms or inflammation, although some individuals may have benefited. However, there are inherent difficulties in examining dietary changes that complicate study design and ultimately conclusions regarding effectiveness.


Assuntos
Colite Ulcerativa , Doença de Crohn , Complexo Antígeno L1 Leucocitário , Adolescente , Teorema de Bayes , Criança , Colite Ulcerativa/complicações , Colite Ulcerativa/dietoterapia , Doença de Crohn/complicações , Doença de Crohn/dietoterapia , Dieta , Fezes/química , Humanos , Inflamação/complicações , Inflamação/dietoterapia , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/dietoterapia , Complexo Antígeno L1 Leucocitário/análise , Medicina de Precisão
2.
JMIR Mhealth Uhealth ; 8(11): e11968, 2020 11 26.
Artigo em Inglês | MEDLINE | ID: mdl-33242014

RESUMO

BACKGROUND: Mobile health (mHealth) technology has the potential to support the Chronic Care Model's vision of closed feedback loops and patient-clinician partnerships. OBJECTIVE: This study aims to evaluate the feasibility, acceptability, and short-term impact of an electronic health record-linked mHealth platform (Orchestra) supporting patient and clinician collaboration through real-time, bidirectional data sharing. METHODS: We conducted a 6-month prospective, pre-post, proof-of-concept study of Orchestra among patients and parents in the Cincinnati Children's Hospital inflammatory bowel disease (IBD) and cystic fibrosis (CF) clinics. Participants and clinicians used Orchestra during and between visits to complete and view patient-reported outcome (PRO) measures and previsit plans. Surveys completed at baseline and at 3- and 6-month follow-up visits plus data from the platform were used to assess outcomes including PRO completion rates, weekly platform use, disease self-efficacy, and impact on care. Analyses included descriptive statistics; pre-post comparisons; Pearson correlations; and, if applicable, effect sizes. RESULTS: We enrolled 92 participants (CF: n=52 and IBD: n=40), and 73% (67/92) completed the study. Average PRO completion was 61%, and average weekly platform use was 80%. Participants reported improvement in self-efficacy from baseline to 6 months (7.90 to 8.44; P=.006). At 6 months, most participants reported that the platform was useful (36/40, 90%) and had a positive impact on their care, including improved visit quality (33/40, 83%), visit collaboration (35/40, 88%), and visit preparation (31/40, 78%). PRO completion was positively associated with multiple indicators of care impact at 3 and 6 months. CONCLUSIONS: Use of an mHealth tool to support closed feedback loops through real-time data sharing and patient-clinician collaboration is feasible and shows indications of acceptability and promise as a strategy for improving pediatric chronic illness management.


Assuntos
Registros Eletrônicos de Saúde , Tecnologia , Criança , Doença Crônica , Estudos de Viabilidade , Humanos , Estudos Prospectivos
3.
Healthcare (Basel) ; 7(4)2019 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-31683925

RESUMO

Inflammatory bowel disease (IBD) affects 3 million children and adults in the US. Treatment involves medications with considerable risk profiles. Dietary modification, such as the specific carbohydrate diet (SCD), may be helpful in treating IBD, but there is insufficient evidence of its effectiveness. N-of-1 trials are ideal for addressing this important research question. The Personalized Research on Diet in Ulcerative Colitis and Crohn's Disease (PRODUCE) study employs a series of 50 individual N-of-1 trials that compare the SCD to a modified SCD. Treatment periods are assigned in blocks of two, with each patient completing two balanced treatment blocks. Patients are randomized to start with the SCD or modified SCD and alternate between conditions for four eight-week periods. A mobile app guides collecting and viewing data, transitioning diets, and reviewing personal results. Primary outcomes include patient reported outcomes (PROs) of stool frequency, stool consistency, pain interference, and gastrointestinal (GI) symptom severity. We examine changes in inflammation via fecal calprotectin. Participants will receive a personalized answer regarding comparative effectiveness between the SCD and a less restrictive diet option (modified SCD), as well as compared to their baseline diet. We will aggregate the results of completed N-of-1 trials across patients to estimate population level comparative effectiveness of these treatments and the effectiveness of each diet.

4.
Clin Nutr ESPEN ; 33: 143-147, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31451251

RESUMO

BACKGROUND & AIMS: The CF medical regimen is notoriously burdensome, comprised of respiratory treatments, oral medications, and nutritional demands. Adequate caloric intake has been identified as a challenge over the lifespan; however, we lack detailed information about nutritional adherence in teens, and the contextual drivers of these behaviors. Adolescence is a time of increased responsibility, reduced parental monitoring, and growing peer connections. There is no literature examining the impact of familial attitudes (e.g., privacy, disease disclosure) and the social milieu (e.g., friendships) on teen nutritional adherence behavior. We hypothesized that better teen nutritional adherence behaviors would be predicted by more favorable familial privacy attitudes, better relationship quality, and greater comfort in disease disclosure. METHODS: Assessment included questionnaires of caregiver privacy attitudes, relationship quality, and disease disclosure. Teens tracked PERT adherence for 1 month and logged daily caloric intake for 2 weeks. This produced detailed information on daily enzyme adherence, caloric intake, and eating frequency. RESULTS: Average PERT adherence, caloric intake, and eating frequency were suboptimal in this sample. More comfort in disease disclosure and less teen/mother discord predicted better PERT adherence. Higher caregiver privacy and lower teen closeness with friends predicted greater caloric intake and eating frequency. CONCLUSIONS: Results suggest that comfort in disease disclosure supports consistent PERT adherence across environments. Adolescents with close friendships may have less time for self-management (e.g., eating). Future research should collect more detailed information about friendships of teens with CF. Results suggest that daily structure and positive, appropriately supportive relationships should be encouraged by care teams.


Assuntos
Fibrose Cística/complicações , Fibrose Cística/psicologia , Estado Nutricional/fisiologia , Adolescente , Criança , Ingestão de Energia , Comportamento Alimentar , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Estudos Longitudinais , Masculino
5.
JMIR Res Protoc ; 6(4): e71, 2017 Apr 28.
Artigo em Inglês | MEDLINE | ID: mdl-28455274

RESUMO

BACKGROUND: Pediatric chronic illness care models are traditionally organized around acute episodes of care and may not meet the needs of patients and their families. Interventions that extend the patient-clinician interaction beyond the health care visit, allow for asynchronous and bidirectional feedback loops that span visits and daily life, and facilitate seamless sharing of information are needed to support a care delivery system that is more collaborative, continuous, and data-driven. Orchestra is a mobile health technology platform and intervention designed to transform the management of chronic diseases by optimizing patient-clinician coproduction of care. OBJECTIVE: The aim of this study is to assess the feasibility, acceptability, and preliminary impact of the Orchestra technology and intervention in the context of pediatric chronic illness care. METHODS: This study will be conducted in the cystic fibrosis and inflammatory bowel disease clinics at Cincinnati Children's Hospital Medical Center. We will enroll interested patients and their caregivers to work with clinicians to use the Orchestra technology platform and care model over a 6-month period. In parallel, we will use quality improvement methods to improve processes for integrating Orchestra into clinic workflows and patient/family lifestyles. We will use surveys, interviews, technology use data, and measures of clinical outcomes to assess the feasibility, acceptability, and preliminary impact of Orchestra. Outcome measures will include assessments of: (1) enrollment and dropout rates; (2) duration of engagement/sustained use; (3) symptom and patient-reported outcome tracker completion rates; (4) perceived impact on treatment plan, communication with the clinical team, visit preparation, and overall care; (5) changes in disease self-efficacy and engagement in care; and (6) clinical outcomes and health care utilization. RESULTS: Participant recruitment began in mid-2015, with results expected in 2017. CONCLUSIONS: Chronic disease management needs a dramatic transformation to support more collaborative, effective, and patient-centered care. This study is unique in that it is testing not only the impact of technology, but also the necessary processes that facilitate patient and clinician collaboration. This pilot study is designed to examine how technology-enabled coproduction can be implemented in real-life clinical contexts. Once the Orchestra technology and intervention are optimized to ensure feasibility and acceptability, future studies can test the effectiveness of this approach to improve patient outcomes and health care value.

6.
BMJ Qual Saf ; 25(7): 509-17, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-26376674

RESUMO

Efforts to ensure effective participation of patients in healthcare are called by many names-patient centredness, patient engagement, patient experience. Improvement initiatives in this domain often resemble the efforts of manufacturers to engage consumers in designing and marketing products. Services, however, are fundamentally different than products; unlike goods, services are always 'coproduced'. Failure to recognise this unique character of a service and its implications may limit our success in partnering with patients to improve health care. We trace a partial history of the coproduction concept, present a model of healthcare service coproduction and explore its application as a design principle in three healthcare service delivery innovations. We use the principle to examine the roles, relationships and aims of this interdependent work. We explore the principle's implications and challenges for health professional development, for service delivery system design and for understanding and measuring benefit in healthcare services.


Assuntos
Atenção à Saúde/métodos , Participação do Paciente , Atenção à Saúde/organização & administração , Atenção à Saúde/normas , Humanos , Modelos Organizacionais , Garantia da Qualidade dos Cuidados de Saúde , Melhoria de Qualidade/organização & administração
7.
J Pediatr Psychol ; 41(5): 510-21, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26582520

RESUMO

OBJECTIVES: Usability and pilot testing of a web intervention (BeInCharge.org [BIC]) of behavior plus nutrition intervention for children with cystic fibrosis (CF) ages 4-9 years. METHODS: Think Aloud methodology was used with five mothers to assess usability and refine the intervention. A pilot trial was then conducted with 10 mothers of children with CF ages 4-9 years randomized to the web-based BIC or a Standard Care Control (STC). Change in weight gain for each group was compared in a pre-to-post design. RESULTS: Mothers rated the usability and clarity of BIC highly. The pilot trial showed children of mothers who received BIC had a significant change in weight pre-to-post-treatment (0.67 kg, p = .04). Change for the STC was not significant (0.41 kg, p = .10). CONCLUSIONS: A web-based behavior plus nutrition intervention appears promising in increasing weight gain in children with CF.


Assuntos
Fibrose Cística/dietoterapia , Internet , Telemedicina/métodos , Terapia Comportamental , Criança , Pré-Escolar , Terapia Combinada , Fibrose Cística/terapia , Feminino , Humanos , Masculino , Projetos Piloto , Método Simples-Cego , Resultado do Tratamento , Aumento de Peso
9.
Religions (Basel) ; 5(2): 385-401, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26900486

RESUMO

Children's diseases can negatively impact marital adjustment and contribute to poorer child health outcomes. To cope with increased marital stress and childhood diseases severity, many people turn to spirituality. While most studies show a positive relationship between spirituality and marital adjustment, spirituality has typically been measured only in terms of individual behaviors. Using the Dyadic Adjustment Scale (DAS) and Daily Phone Diary data from a sample of 126 parents of children with cystic fibrosis as a context for increased marital stress, spiritual behavior of mother-father dyads and of whole families were used as predictors of marital adjustment. Frequency and duration of individual, dyadic and familial spiritual activities correlated positively with dyadic adjustment. Significant differences in spiritual activities existed between couples with marital adjustment scores above and below the cutoff for distress. The only significant factors in regressions of spiritual activities on marital adjustment scores were number of pulmonary exacerbations and parent age. Higher odds of maintaining a marital adjustment score greater than 100 were significantly associated with spending approximately twelve minutes per day in individual, but not conjugal or familial, spiritual activities. The Daily Phone Diary is a feasible tool to study conjugal and familial activities and their relationships with beliefs and attitudes, including spirituality.

10.
Pediatr Pulmonol ; 47(6): 558-66, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22170872

RESUMO

The course of cystic fibrosis (CF) progression in children is affected by parent adherence to treatment plans. The Theory of Reasoned Action (TRA) posits that intentions are the best behavioral predictors and that intentions reasonably follow from beliefs ("determinants"). Determinants are affected by multiple "background factors," including spirituality. This study's purpose was to understand whether two parental adherence determinants (attitude towards treatment and self-efficacy) were associated with spirituality (religious coping and sanctification of the body). We hypothesized that parents' attitudes toward treatment adherence are associated with these spiritual constructs. A convenience sample of parents of children with CF aged 3-12 years (n = 28) participated by completing surveys of adherence and spirituality during a regular outpatient clinic visit. Type and degree of religious coping was examined using principal component analysis. Adherence measures were compared based on religious coping styles and sanctification of the body using unpaired t-tests. Collaborative religious coping was associated with higher self-efficacy for completing airway clearance (M = 1070.8; SD = 35.8; P = 0.012), for completing aerosolized medication administration (M = 1077.1; SD = 37.4; P = 0.018), and for attitude towards treatment utility (M = 38.8; SD = 2.36; P = 0.038). Parents who attributed sacred qualities to their child's body (e.g., "blessed" or "miraculous") had higher mean scores for self-efficacy (airway clearance, M = 1058.6; SD = 37.7; P = 0.023; aerosols M = 1070.8; SD = 41.6; P = 0.020). Parents for whom God was manifested in their child's body (e.g., "My child's body is created in God's image") had higher mean scores for self-efficacy for airway clearance (M = 1056.4; SD = 59.0; P = 0.039), aerosolized medications (M = 1068.8; SD = 42.6; P = 0.033) and treatment utility (M = 38.8; SD = 2.4; P = 0.025). Spiritual constructs show promising significance and are currently undervalued in chronic disease management.


Assuntos
Fibrose Cística/psicologia , Fibrose Cística/terapia , Pais/psicologia , Cooperação do Paciente/psicologia , Espiritualidade , Adaptação Psicológica , Adulto , Atitude Frente a Saúde , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Religião e Psicologia , Autoeficácia
11.
Pediatr Pulmonol ; 46(1): 31-5, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-20812240

RESUMO

Inadequate intake and suboptimal growth are common problems for patients with CF and a critical target for intervention. The purpose of this study was to compare the growth outcomes of children with CF who participated in a randomized clinical trial to improve energy intake and weight to children with CF receiving standard of care during the same time period. Our primary outcome was change in body mass index z-score (BMI z-score) over 2 years. An exploratory outcome was forced expiratory volume at 1-sec (FEV(1) ) over 2 years. Participants were children ages 4-12 with CF, who participated in a randomized clinical trial of behavior plus nutrition intervention versus nutrition education alone, and a matched Comparison Sample receiving standard of care drawn from the Cystic Fibrosis Foundation (CFF) Registry. Children in the Clinical Trial Group (N=67) participated in a 9-week, nutrition intervention and were followed at regular intervals (3, 6, 12, 18, and 24 months) for 2 years post-treatment to obtain anthropometric and pulmonary function data. For each child in the Comparison Sample (N=346), these measures were obtained from the CFF Registry at matching intervals for the 27-month period corresponding to the clinical trial. Over 27 months, children in the Clinical Trial Group (the combined sample of the behavior plus nutrition and the nutrition alone) demonstrated significantly less decline in BMI z-score, -0.05 (SD=0.68, CI= -0.23 to 0.13), as compared to children in the Comparison Sample, -0.21 (SD=0.67, CI= -0.31 to -0.11). No statistically significant differences were found for decline in FEV(1) between children in the Clinical Trial Group and the Comparison Sample. The key implication of these findings is that intensive behavioral and nutritional intervention is effective and needs to be adapted so that it can be broadly disseminated into clinical practice.


Assuntos
Desenvolvimento Infantil , Fibrose Cística/dietoterapia , Fibrose Cística/fisiopatologia , Padrão de Cuidado , Aumento de Peso , Antropometria , Índice de Massa Corporal , Criança , Pré-Escolar , Ingestão de Energia , Feminino , Volume Expiratório Forçado , Humanos , Masculino , Resultado do Tratamento
12.
J Asthma ; 47(2): 170-7, 2010 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-20170325

RESUMO

BACKGROUND: Patient-reported outcomes such as health-related quality of life (HRQOL) are increasingly used as primary endpoints in clinical trials. The Pediatric Quality of Life Inventory (PedsQL) is widely used as a measure of HRQOL and may be a particularly suitable primary outcome in pediatric asthma clinical trials. OBJECTIVES: To examine the reliability, validity, and responsiveness to clinical change of the PedsQL 4.0 Generic Core Scales and PedsQL Asthma Module Asthma Symptoms Scale in a sample of vulnerable children with persistent asthma recruited from Federally Qualified Health Centers. METHODS: Children (N = 252; ages 3 to 14 years) with persistent asthma (27% mild, 40.9% moderate, 32.1% severe) and their parents (93.7% mother, 83.3% Hispanic, 76.9% Spanish-speaking, 72.6% less than a high school diploma) enrolled in a clinical trial completed the PedsQL 4.0 Generic Core Scales, the PedsQL 3.0 Asthma Module Asthma Symptoms Scale, and a measure of asthma symptom frequency (used as an indicator of clinical change) at baseline and 3-month follow-up. RESULTS: The PedsQL demonstrated adequate internal consistency reliability and convergent and discriminative validity. Based on intra- and intersubject change, effect sizes, and standard errors of measurement, the PedsQL demonstrated responsiveness to clinical change. Conclusions. For both child self-report and parent proxy-report, the PedsQL Generic Core Scales Total Scale score and the PedsQL Asthma Symptoms Scale are suitable for use as primary asthma clinical trial outcomes.


Assuntos
Asma/diagnóstico , Qualidade de Vida , Índice de Gravidade de Doença , Inquéritos e Questionários , Adolescente , Asma/psicologia , Asma/terapia , Criança , Pré-Escolar , Ensaios Clínicos como Assunto/métodos , Emoções , Feminino , Saúde , Hispânico ou Latino , Humanos , Masculino , Saúde Mental/estatística & dados numéricos , Pais/educação , Grupos Populacionais/estatística & dados numéricos , Procurador , Psicometria , Ensaios Clínicos Controlados Aleatórios como Assunto , Reprodutibilidade dos Testes , Socialização , Estudantes/psicologia , Resultado do Tratamento
13.
Pediatr Pulmonol ; 45(1): 78-82, 2010 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-19953660

RESUMO

Better growth and nutritional status is strongly associated with better pulmonary function and survival in children with CF. Behavioral intervention is an efficacious treatment approach for improving calorie intake and weight gain in children with CF; and recently has been shown to facilitate maintenance of daily energy intake at 120% of the healthy population over a 2-year period. However, no study to date has examined factors that predict outcome with behavior intervention to promote weight gain in CF. The objectives of this study were to examine the influence of nutritional status, mealtime behavior problems, and maternal depressive symptoms on calorie intake and weight gain following participation in a randomized trial to improve nutritional status in cystic fibrosis. Sixty-seven children, aged 4-12 years with cystic fibrosis participated in a clinical trial targeting calorie and weight increases. Participants completed baseline measures of mealtime behavior problems, maternal depression, and fat absorption, and baseline and post-treatment caloric intake and weight. Assignment to behavioral group (R(2) change = 0.17), lower frequency of mealtime behavior problems (R(2) change = 0.11), and higher maternal depression (R(2) change = 0.06) predicted greater calorie increase baseline to post-treatment. Assignment to behavioral group (R(2) change = 0.09), higher baseline weight (R(2) change = 0.10), fat absorption (R(2) change = 0.02), and lower frequency of mealtime behavior problems (R(2) change = 0.06) predicted greater weight gain baseline to post-treatment. Less frequent mealtime behavior problems led to better calorie intake and weight gain in a 9-week clinical trial of behavior intervention and nutrition education to improve nutritional status in cystic fibrosis. The key implication from these findings is that early referral to behavioral intervention as soon as growth deficits become a concern will likely yield the best nutritional outcomes.


Assuntos
Transtornos da Nutrição Infantil/terapia , Fibrose Cística/complicações , Comportamento Alimentar , Estado Nutricional , Aumento de Peso , Terapia Comportamental/métodos , Terapia Comportamental/estatística & dados numéricos , Criança , Comportamento Infantil/psicologia , Transtornos do Comportamento Infantil/complicações , Transtornos do Comportamento Infantil/psicologia , Transtornos da Nutrição Infantil/etiologia , Transtornos da Nutrição Infantil/psicologia , Pré-Escolar , Fibrose Cística/psicologia , Transtorno Depressivo/complicações , Transtorno Depressivo/psicologia , Gorduras na Dieta/metabolismo , Ingestão de Energia , Feminino , Humanos , Masculino , Mães/psicologia , Resultado do Tratamento , Estados Unidos
14.
Arch Pediatr Adolesc Med ; 163(10): 915-21, 2009 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-19805710

RESUMO

OBJECTIVE: To evaluate the efficacy of a behavioral plus nutrition education intervention, Be In CHARGE!, compared with that of a nutrition education intervention alone on caloric intake and weight gain in children with cystic fibrosis and pancreatic insufficiency. DESIGN: Randomized controlled trial. SETTING: Cystic fibrosis centers in the eastern, midwestern, and southern United States. PARTICIPANTS: Seventy-nine children aged 4 to 12 years below the 40th percentile for weight for age were recruited. Sixty-seven completed the intervention and 59 completed a 24-month follow-up assessment. INTERVENTION: Comparison of a behavioral plus nutrition education intervention with a nutrition education intervention alone. MAIN OUTCOME MEASURES: Primary outcomes were changes from pretreatment to posttreatment in caloric intake and weight gain. Secondary outcomes were changes from pretreatment to posttreatment in percentage of the estimated energy requirement and body mass index z score. These outcomes were also examined 24 months posttreatment. RESULTS: After treatment, the behavioral plus nutrition education intervention as compared with the nutrition education intervention alone had a statistically greater average increase on the primary and secondary outcomes of caloric intake (mean, 872 vs 489 cal/d, respectively), percentage of the estimated energy requirement (mean, 148% vs 127%, respectively), weight gain (mean, 1.47 vs 0.92 kg, respectively), and body mass index z score (0.38 vs 0.18, respectively). At the 24-month follow-up, children in both conditions maintained an estimated energy requirement of around 120% and did not significantly differ on any outcomes. CONCLUSIONS: A behavioral plus nutrition education intervention was more effective than a nutrition education intervention alone at increasing dietary intake and weight over a 9-week period. However, across the 24-month follow-up, both treatments achieved similar outcomes. Trial Registration clinicaltrials.gov Identifier: NCT00006169.


Assuntos
Terapia Comportamental , Fibrose Cística/terapia , Comportamento Alimentar , Educação em Saúde , Magreza/terapia , Criança , Pré-Escolar , Ingestão de Energia , Feminino , Seguimentos , Humanos , Masculino , Poder Familiar , Estados Unidos , Aumento de Peso
15.
Acad Pediatr ; 9(2): 106-13, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-19329101

RESUMO

BACKGROUND: Although it is well known which groups of children are more vulnerable to poor health care access, quality, and outcomes, less is known about how and why this occurs. Barriers to care-sociobehavioral processes that interfere with successful interaction with the health care system--may be a link between vulnerability and access, experiences, and outcomes. OBJECTIVE: The aim of this study was to examine the reliability, validity, and responsiveness to change of the Barriers to Care Questionnaire (BCQ) in a sample of children with persistent asthma recruited from federally qualified health centers. METHOD: Children (N = 252; aged 2-14 years) with persistent asthma and their parents (93.7% mother, 83.3% Hispanic, 76.9% Spanish speaking; 72.6% less than a high school diploma), enrolled in a clinical trial, and completed the BCQ, questions relating to access to care, the Parent's Perceptions of Primary Care Measure, and the Pediatric Quality of Life Inventory 4.0 (PedsQL) at baseline and 3 months. RESULTS: The BCQ demonstrated internal consistency reliability. Supporting construct validity, barriers to care were worse for children without health insurance or an identified provider and who had problems with care or foregone care. Higher barriers correlated with poorer primary care and lower patient health-related quality of life. The BCQ was responsive to change, showing within- and between-subject differences for subjects with improved realized access from baseline to 3 months. CONCLUSION: The BCQ is a reliable, valid, and responsive measure of barriers to care for vulnerable children with asthma. Barriers to care were associated with poorer access, lower primary care quality, and worse health-related quality of life.


Assuntos
Asma/terapia , Acesso aos Serviços de Saúde , Atenção Primária à Saúde/estatística & dados numéricos , Inquéritos e Questionários , Adolescente , Criança , Pré-Escolar , Doença Crônica , Análise Discriminante , Feminino , Humanos , Lactente , Masculino , Pais , Qualidade de Vida , Reprodutibilidade dos Testes , Populações Vulneráveis
16.
J Health Psychol ; 13(3): 336-47, 2008 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-18420768

RESUMO

Maladaptive eating attitudes and behaviors are common in adolescent females with Type 1 Diabetes Mellitus (T1DM). This research assessed potential pathways through which individual and familial factors relate to treatment adherence and glycemic control. Seventy-five females with T1DM (aged 11-17 years) and their mothers completed questionnaires regarding communication, diabetes management, and eating attitudes and behaviors. Hierarchical regression analyses found that body image dissatisfaction moderates the relationship between negative communication and maladaptive eating attitudes and behaviors. Treatment adherence mediates the relationship between maladaptive eating attitudes and behaviors and glycemic control. None of the participants endorsed omitting insulin for the purposes of weight management. This study highlights the need to address familial and individual factors along with treatment adherence within this population.


Assuntos
Imagem Corporal , Comunicação , Diabetes Mellitus Tipo 1/psicologia , Negativismo , Autoimagem , Adolescente , Criança , Feminino , Humanos , Entrevistas como Assunto
17.
Pediatr Transplant ; 12(3): 289-99, 2008 May.
Artigo em Inglês | MEDLINE | ID: mdl-18282211

RESUMO

Adolescence is a particularly high-risk period for non-adherence with post-transplant medical regimens. There remains a lack of research investigating factors related to non-adherence in adolescent LT recipients. The present study empirically assessed the relationship between adherence and HRQOL in adolescent LT recipients. Participants included 25 adolescents (mean = 15.1 yr, range 12-17.9) and their parent/guardian(s). Adherence was assessed using multiple indices including clinician-conducted interviews, rate of clinic attendance, and s.d. of consecutive tacrolimus blood levels. HRQOL was examined using self-report and parent-proxy report on well-validated assessment measures. Results indicated that 76% of participants were non-adherent on at least one measure of adherence, and HRQOL was significantly lower than normative data for healthy children. Tacrolimus s.d. were significant related to poor HRQOL across domains of physical, school, and social functioning. Non-adherent adolescents reported poorer health perceptions, self-esteem, mental health, family cohesion, and more limitations in social and school activities related to physical, emotional, and behavioral problems. These results suggest that empirically based assessment of HRQOL may help identify those at highest risk for behavior, emotional and school difficulties, as well as non-adherence. The examination of tacrolimus s.d. may also help identify patients who may benefit from intervention to promote adherence and HRQOL. Prospective investigations are necessary to further identify the impact of HRQOL on adherence and long-term health outcomes to further guide clinical intervention.


Assuntos
Transplante de Fígado/métodos , Cooperação do Paciente , Qualidade de Vida , Adolescente , Criança , Comportamento Infantil/psicologia , Feminino , Seguimentos , Rejeição de Enxerto/prevenção & controle , Humanos , Imunossupressores/uso terapêutico , Transplante de Fígado/psicologia , Masculino , Tacrolimo/uso terapêutico , Fatores de Tempo , Resultado do Tratamento
18.
Pediatr Diabetes ; 8(6): 377-83, 2007 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-18036064

RESUMO

OBJECTIVE: To compare medical, nutritional, and psychosocial outcomes of continuous subcutaneous insulin infusion (CSII) therapy and multiple daily insulin injections (MDI) in preschoolers with type 1 diabetes mellitus (T1DM) in a randomized controlled trial. STUDY DESIGN: Sixteen children (mean age 4.4 +/- 0.7 yr, range 3.1-5.3 yr) with T1DM were randomly assigned to CSII or MDI. Hemoglobin A1c (HbA1c) was measured monthly for 6 months. Glucose variability was measured at baseline and at 6 months using continuous blood glucose sensing. Quality of life, adverse events, and nutrition information were assessed. RESULTS: Parents of the CSII group reported a significant decrease in diabetes-related worry, while parents of the MDI group reported an increased frequency of stress associated with their child's medical care. Mean HbA1c levels from baseline (CSII 8.3 +/- 1.4%, MDI 8.0 +/- 0.8%) to 6 months (CSII 8.4 +/- 0.8%, MDI 8.2 +/- 0.4%) remained stable, and group differences were not significant. There were no significant group differences in duration of hypo- or hyperglycemic events or frequency of adverse events. CONCLUSION(S): For young children with T1DM, CSII therapy is comparable to MDI therapy with regard to glucose control but is associated with higher treatment satisfaction and improved quality of life.


Assuntos
Diabetes Mellitus Tipo 1/tratamento farmacológico , Diabetes Mellitus Tipo 1/psicologia , Insulina/administração & dosagem , Qualidade de Vida , Adulto , Pré-Escolar , Feminino , Humanos , Hipoglicemiantes/administração & dosagem , Injeções Subcutâneas , Sistemas de Infusão de Insulina , Masculino , Estado Nutricional/efeitos dos fármacos , Relações Pais-Filho , Medição de Risco , Resultado do Tratamento
19.
J Pediatr Psychol ; 31(6): 630-42, 2006 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-16120763

RESUMO

OBJECTIVE: To establish benchmarks for work performance of pediatric psychologists. METHODS: All full members of the Society of Pediatric Psychology, Division 54 of the American Psychological Association (N = 1043), were recruited for participation in a mail survey. Four hundred and seventy surveys were returned (45%); 356 usable surveys (34%) were included in the analyses. Surveys assessed work-settings, academic appointments, salary, performance expectations and evaluations, and satisfaction. RESULTS: Most of the survey respondents, 63%, worked in a hospital setting. On average, survey respondents were directly accountable for generating half, 52%, of their salary. Salary covered by institutions was most frequently provided for nonrevenue generating activities such as administration and teaching. Most of the sample (78%) indicated clear performance expectations and criteria. CONCLUSIONS: Findings update and expand previously established benchmarks for work performance and have implications for the practice of pediatric psychology in an ever-changing health care environment.


Assuntos
Eficiência Organizacional/estatística & dados numéricos , Avaliação de Desempenho Profissional , Psicologia da Criança/estatística & dados numéricos , Local de Trabalho/psicologia , Centros Médicos Acadêmicos , Hospitais , Humanos , Inquéritos e Questionários
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