Adherence In Youth Research Articles

Changes in Treatment Adherence and Glycemic Control During the Transition to Adolescence in Type 1 Diabetes

OBJECTIVETo test models of unidirectional and bidirectional change between treatment adherence and glycemic control in youth with type 1 diabetes.RESEARCH DESIGN AND METHODSWe conducted a 2-year longitudinal, multisite study of 225 youth with type 1 diabetes recruited at the cusp of adolescence (aged 9–11 years) to describe the mutual influences of glycemic control as measured by HbA1c and treatment adherence as measured by blood glucose monitoring frequency (BGMF) during the transition to adolescence.RESULTSHbA1c increased from 8.2 to 8.6% (P < 0.001) and BGMF decreased from 4.9 to 4.5 checks per day (P < 0.02) during the 2-year period. Changes in the BGMF slope predicted changes in HbA1c. A change (increase) in HbA1c was associated with a change (decrease) in BGMF of 1.26 (P < 0.001) after controlling for covariates.CONCLUSIONSThe magnitude of the effect of declining treatment adherence (BGMF) on glycemic control in young adolescents may be even greater than declines observed among older adolescents. BGMF offers a powerful tool for targeted management of glycemic control for type 1 diabetes during the critical transition to adolescence.

Barriers to Medication Adherence in HIV-Infected Children and Youth Based on Self- and Caregiver Report

Nonadherence to antiretroviral therapy among children/youth with HIV often is associated with disease progression. This study examined the agreement between child and caregiver perceptions of barriers to adherence and factors associated with these barriers. Children/youth with perinatally acquired HIV and their parents/caregivers (n = 120 dyads) completed a questionnaire about 19 potential barriers to adherence to the child's antiretroviral therapy regimen. Agreement between the 2 reports was measured via the kappa statistic. Factors associated with the barriers were assessed by using multiple logistic regression. Of the 120 children, 55% were African American, 54% were boys, and the average age was 12.8 years. The most frequently reported barrier by either the caregiver or youth was "forgot." There were varying degrees of agreement between child and caregiver on the following barriers: "forgot," "taste," "child was away from home," "child refused," and "child felt good." Children who knew their HIV status were more likely to report logistical barriers, such as scheduling issues. Children with a biological parent as their caregiver were more likely to report regimen or fear of disclosure as a barrier. Lack of agreement was observed for more than half of the studied barriers, indicating discrepancies between children's and caregivers' perceptions of factors that influence medication-taking. The findings suggest a need for interventions that involve both child and caregiver in the tasks of remembering when to administer the child's medications, sustaining adherence, and appropriately transitioning medication responsibility to the youth.

Who Forgot? The Challenges of Family Responsibility for Adherence in Vulnerable Pediatric Populations

* Abbreviations: ART — : antiretroviral therapy Buchanan et al1 have provided important data and a thoughtful report on barriers to medication adherence in HIV-infected children and youth. These investigators wisely assessed both child and caregiver perceptions about barriers to adherence with a questionnaire containing 19 different barriers to medication adherence asking each respondent how often each barrier occurred in the last month. They did this to assess the congruence between child and caregiver perception of barriers to adherence to antiretroviral therapy (ART). They also used an adaptation1 of the Diabetes Family Responsibility Questionnaire ,3 a self-report measure I developed with Wendy Auslander at Washington University in 1990. Identical versions of this questionnaire ask the parent and child if the primary responsibility for a series of tasks involved in adhering to the prescribed treatment plan (originally type 1 diabetes) is carried out by the parent or the child, or if the responsibility is shared between the parent and child. We originally developed this questionnaire about family–responsibility-sharing to understand more about how the transition of responsibility for adherence tasks between parents and children relates to health outcomes. … Address correspondence to Barbara J. Anderson, PhD, Department of Pediatrics, Baylor College of Medicine, 1102 Bates St, Suite #730, Houston, TX 77030. E-mail: bja{at}bcm.edu

Barriers to Medication Adherence in HIV-Infected Children and Youth Based on Self- and Caregiver Report

Barriers to Medication Adherence in HIV-Infected Children and Youth Based on Self- and Caregiver Report

Adolescent adherence to psychosocial treatment: Mental health clinicians' perspectives on barriers and promoters

Poor adolescent adherence to mental health psychosocial treatment significantly undermines effectiveness. Approximately one-third of all youth drop out or prematurely terminate from psychosocial treatment. This study examined youth adherence to psychosocial treatment from the perspective of community-based mental health clinicians (n =34) interviewed across three focus groups. A grounded theory analysis was applied to investigate the promoters and barriers influencing adolescent adherence to treatment. Clinicians identified four domains (adolescent, family, clinician, and agency) that serve as promoters and barriers to adherence. Barriers to adherence were located primarily in adolescent and family domains, whereas promoters were attributed within the clinician domain. Understanding of the complex influences on adolescent adherence may facilitate increased awareness and intervention options for clinicians.

Exploratory analysis of the relationships among different methods of assessing adherence and glycemic control in youth with type 1 diabetes mellitus.

The present study examined four methods of assessing diabetes adherence (self-report, diary measure, electronic monitoring, and provider rating) within a population of youth with Type I Diabetes Mellitus (T1DM). Comparisons were conducted among the four methods of assessing diabetes adherence. Associations among the seven different measures of blood glucose monitoring (BGM) and HbA1c were examined. An exploratory stepwise regression analysis was conducted to determine the best predictors of glycemic control (i.e., Hemoglobin A1c; HbA1c) while controlling for relevant demographic variables. The adherence measures appeared to be interrelated. The relationships between many of the BGM measures and HbA1c demonstrated a medium effect size. The Self Care Inventory (SCI) adjusted global score was the strongest predictor of HbA1c, even after taking the demographic variables into account. The SCI is a robust, easy-to-use, and cost-efficient measure of adherence that has a strong relationship to HbA1c. Demographic variables are important to examine within the context of different methods of assessing adherence. The research methodology utilized to assess both general diabetes adherence and more specific behavioral measurements of BGM should be clearly documented in future studies to ensure accurate interpretation of results.

Barriers to treatment of paediatric obstructive sleep apnoea: Development of the adherence barriers to continuous positive airway pressure (CPAP) questionnaire

Continuous positive airway pressure (CPAP) treatment is often prescribed for youth as a treatment for obstructive sleep apnoea (OSA). Efficacy research in youth is limited, though some evidence suggests that it may relieve symptoms of OSA and possibly prevent future physical, emotional, and behavioural complications. However, the device must be used consistently for benefits to be realised. Non-adherence to medical treatment is prevalent among youth with chronic illness, yet little is known regarding adherence to CPAP in paediatric OSA. Using a sample of 51 youth (age 8-17 years) recruited from a paediatric sleep specialty clinic, the aims of the current study were to: (1) present descriptive data regarding CPAP adherence in youth with OSA, and (2) develop a psychometrically sound measure of barriers for adherence to CPAP use for youth with OSA. Results indicated that adherence to CPAP is poor: youth in the current sample used their CPAP on average 3.35 h per night. The adherence barriers measure demonstrated excellent psychometric properties. The adherence barriers to CPAP questionnaire has the potential to be a useful clinic-based tool for identifying patient-specific issues with CPAP adherence in youth with OSA.

Psychometric Properties of the Revised Parental Monitoring of Diabetes Care Questionnaire in Adolescents With Type 1 Diabetes

We evaluated the psychometric properties of a revised version of the Parental Monitoring of Diabetes Care questionnaire (PMDC-R) designed to evaluate parental supervision and monitoring of adolescent diabetes care behaviors. The revised measure was intended to capture a broad range of ways used by parents to gather information about youth adherence to diabetes care. Two hundred sixty-seven caregivers of 12-18-year-old adolescents with type 1 diabetes completed the PMDC-R. Measures of parental knowledge of youth illness management, illness management behavior, and metabolic control were also obtained. The PMDC-R demonstrated good internal consistency (alpha coefficient = .91) and test-retest reliability (r = .79, p < .001). Supporting the instrument's construct validity, a bifactor model with one primary factor and three secondary factors had an acceptable fit to the data (comparative fit index = .92, root mean square error of approximation = .06). Concurrent validity was also supported. In structural equation models, parental monitoring, as assessed by the PMDC-R, had a significant direct effect on parental knowledge of adolescent diabetes management and, through knowledge, an indirect effect on adolescent diabetes management and metabolic control. The PMDC-R displayed strong psychometric properties and represents an important next step in refining the measurement of parental monitoring for youth with chronic illnesses.

Body satisfaction, nutritional adherence, and quality of life in youth with cystic fibrosis

Children with cystic fibrosis (CF) typically have similar nutritional intake as healthy peers, despite recommendations to consume more calories and fat. Body satisfaction may play a role in nutritional intake: females may be content with their smaller size despite recommendations for weight gain, while males may desire to be larger and more muscular, which is more congruent with medical advice. Females are especially at risk, given their propensity to desire a smaller body size, tendency for lower HRQOL, steeper trajectory of health decline and shorter life expectancy than males. This study evaluated body satisfaction in relation to nutritional adherence and HRQOL in youth with CF. Fifty-four individuals with CF (age 9-17) completed the Cystic Fibrosis Questionnaire-Revised (CFQ-R), the Figure Rating Scale, and a 24-hr diet recall interview with their caregiver. Twenty-four percent of youth were non-adherent with caloric goals, and 40.7% did not obtain the minimum recommendation for fat intake. Youth were classified as inconsistent with treatment goals (TI) if they desired a smaller body size or were content with their current size despite a BMI less than the 50th percentile; 44.8% of females were classified as TI, compared to only 8% of males. Statistical analyses were performed to evaluate the impact of gender and body satisfaction on HRQOL in youth with CF. Linear multiple regression models were fit; TI females had Emotional HRQOL scores 23 points lower than males. Results suggest that improving body satisfaction, especially for females, may help to improve overall quality of life and potentially impact nutritional adherence.

Modifiable Behavioral Factors Associated With Medication Adherence in Youth With Inflammatory Bowel Disease

Modifiable Behavioral Factors Associated With Medication Adherence in Youth With Inflammatory Bowel Disease

Adherence to Diet in Youth with Type 1 Diabetes

This article reviewed current findings on dietary adherence in youth with type 1 diabetes mellitus (T1DM), discussed factors predicting dietary adherence, and presented directions for future research. The included studies involved youth with T1DM, presented dietary adherence data specifically, and/or described usual dietary patterns in youth. Articles that explored predictors had to focus exclusively on dietary adherence. The final sample was 23 articles. Adherence articles were organized into two categories: eating behaviors and macronutrients and dietary recommendations. Rates of adherence to eating behaviors ranged from 21% to 95%. Studies examining macronutrients and dietary recommendations revealed higher than recommended intakes of fat and saturated fat and lower than recommended intakes of fruits, vegetables, and whole grains. Six studies investigated factors predicting dietary adherence. These studies revealed associations with child behavior problems and knowledge deficits. The available literature identified many youth with T1DM struggling with adherence and not meeting dietary guidelines for their disease. Future research should examine diet in youth exclusively on intensive insulin regimens, community-based predictors of diet, and the influence of mood on dietary adherence.

Situational Temptation for HIV Medication Adherence in High-Risk Youth

Abstract This study explored the role of situational temptation, a component of self-efficacy, in adolescent and young adult (ages 16-24) HIV medication adherence by assessing participants' perceptions of their temptation to miss medications in various situations (e.g., when medication causes physical side effects, when there is fear of disclosure of HIV status). Youth (n = 186; 83% African American) were participants in a multisite clinical trial examining the efficacy of a motivational intervention. Data were collected using computer-assisted personal interviewing. Youth believed the most tempting reasons or situations that might lead them to miss their HIV medications to be symptoms (if the medicine caused you to have other physical symptoms) and sick (if the medicine made you sick to your stomach or made you throw up or if it tasted bad), but these were not significantly associated with nonadherence. This suggests disconnection between youths' expectations of temptation and actual tempting situations associated with nonadherence. Situational temptations associated with nonadherence included lack of social support, needing a break from medications, and not seeing a need for medications. Interventions to improve adherence should consider perceptions of HIV medications, particularly the benefits of taking medications and expectations of physical symptoms. Interventionists and clinicians should consider situations that may tempt youth to miss doses of medication and help youth gain insight into these temptations. Emerging methods, such as Ecological Momentary Assessment (e.g., daily diaries, cell phone text messaging), may be useful in gaining insight into the day-to-day experience of youth living with HIV.

Abstract PR-11: HPV vaccine adherence in urban youth

Abstract Background: Human papillomavirus (HPV) is the most common sexually transmitted disease among adolescent females in the United States, with 29.5% of sexually active 14-19 year olds infected at any given time. Persistent infection with cancer causing types of HPV is also a necessary step in the cervical cancer carcinogenesis process. HPV vaccines have been licensed in the United States since 2006; however, relatively modest proportions of the vaccine-eligible population have elected to receive the HPV vaccine. Further, among those who initiate HPV vaccination, a majority fail to complete the three-dose regimen needed for maximum protection. Methods: Data from the clinical data repository at the University of Maryland Medical Center was queried to identify women that initiated HPV vaccination between August 2006 (when UMMC began offering the HPV vaccine) and August 2010. Statistical analyses were conducted to assess vaccine adherence in the study population. The association of age and race with vaccination adherence was also assessed. Results: During the time period of interest, 9,658 women potentially eligible women between 9-26 years were seen at the UMMC outpatient practices. Of those, 2,641 women (27.3% of the target group) initiated HPV vaccination. African-American women comprised 2/3 of those who initiated vaccination. Among those women that initiated vaccination, 39.1% completed a single dose, 30.1% completed 2 doses, and 30.78 completed the recommended 3-dose regimen. Age was related to vaccine adherence, with women 18 and older being least likely to complete more than a single dose (p=0.001). African-American women were less likely than Caucasian women to complete the three-dose regimen (p&amp;lt;0.001). Conclusions: Despite strong efficacy data for the HPV vaccines, relatively small proportions of eligible women have elected to uptake the vaccine as primary prevention for cervical cancer. Further, of those who initiate vaccination, significant proportions fail to complete the recommended three-dose regimen. Young adult women are the least likely to complete the three-dose regimen as are women in minority groups. The public health consequence of this is that significant numbers of women remain unprotected or underprotected. Evidence-based interventions are needed to foster both vaccine uptake and adherence for optimal prevention cervical cancer. Interventions that address barriers for minority women and young adult women are needed. Technological innovations such as text messaging may offer an effective method to address these issues. This talk is also presented as Poster B103. Citation Information: Cancer Prev Res 2010;3(12 Suppl):PR-11.

Abstract B103: HPV vaccine adherence in urban youth

Abstract This abstract is being presented as a short talk in Concurrent Session 15. A full abstract is printed in the Proferred Abstracts section (PR-11) of the Conference Proceedings. Citation Information: Cancer Prev Res 2010;3(12 Suppl):B103.

Family Functioning and Adherence in Youth With Type 1 Diabetes: A Latent Growth Model of Glycemic Control

The objective of this research is to determine the direct impact of family variables on initial status of a glycosylated hemoglobin A1c test (HbA1c) and HbA1c rate of change, and to determine the indirect effects of family variables on HbA1c through adherence. Study participants were 224 children and their parents who completed baseline measures of diabetes-specific family functioning and separate parent- and child-structured adherence interviews. HbA1c assays were performed at baseline, Year 1, and Year 2. Latent growth curve modeling indicated that, together, disagreement about responsibility for diabetes regimen, critical parenting, parental guidance, and parental warmth predicted initial status of HbA1c through adherence. Individually, critical parenting indirectly predicted initial status of HbA1c. Family variables did not directly predict initial status or rate of change in HbA1c, and did not indirectly predict rate of change in HbA1c over 2 years. Risk for high HbA1c remains elevated over time for children reporting critical parents, but their trajectory does not indicate compounding risk over time.

Directly Observed Therapy (DOT) for Nonadherent HIV-Infected Youth: Lessons Learned, Challenges Ahead

Adherence to medications is critical to optimizing HIV care and is a major challenge in youth. The utility of directly observed therapy (DOT) to improve adherence in youth with HIV remains undefined and prompted this pilot study. Four U.S. sites were selected for this 24-week cooperative group study to assess feasibility and to identify the logistics of providing DOT to HIV-infected youth with demonstrated adherence problems. Once-a-day DOT was provided by DOT facilitators at the participant's choice of a community-based location and DOT tapered over 12 weeks to self-administered therapy based on ongoing adherence assessments. Twenty participants, median age 21 years and median CD4 227 cells/microl, were enrolled. Participants chose their homes for 82% of DOT visits. Compliance with recommended DOT visits was (median) 91%, 91%, and 83% at weeks 4, 8, and 12, respectively. Six participants completed >90% of the study-specified DOT visits and successfully progressed to self-administered therapy (DOT success); only half sustained >90% medication adherence 12 weeks after discontinuing DOT. Participants considered DOT successes were more likely to have higher baseline depression scores (p = 0.046). Via exit surveys participants reported that meeting with the facilitator was easy, DOT increased their motivation to take medications, they felt sad when DOT ended, and 100% would recommend DOT to a friend. In conclusion, this study shows that while community-based DOT is safe, feasible, and as per participant feedback, acceptable to youth, DOT is not for all and the benefits appear short-lived. Depressed youth appear to be one subgroup that would benefit from this intervention. Study findings should help inform the design of larger community-based DOT intervention studies in youth.

Improving Medication Adherence in Chronic Pediatric Health Conditions: A Focus on ADHD in Youth

Chronic pediatric health conditions pose a significant challenge for youth, their families and professionals who treat these conditions. Long-term adherence to interventions, including and often-times, pharmacological interventions, is necessary but often problematic. Understanding factors related to poor adherence and intervening to improve adherence is essential in order to maximize long-term outcomes. Attention-deficit/hyperactivity disorder (ADHD) is one such chronic health condition requiring long-term adherence to treatment. The aims of this review are to 1) review the extant literature regarding rates of adherence to medication for youth with ADHD; 2) summarize what is known regarding factors that impede and support greater adherence to medication; 3) introduce the Unified Theory of Behavior Change as a conceptual model that may assist in developing adherence treatment packages to support medication adherence; and 4) describe several potential interventions based on the Unified Theory of Behavior Change that may improve adherence to medication for youth with ADHD. Although pharmacological interventions for youth with ADHD have been evaluated for decades, only more recently has adherence to medication been the subject of interest. However, this literature has exclusively focused on understanding factors related to adherence, with no empirical studies of interventions to improve adherence in youth with ADHD. This paper provides a rationale and research agenda for systematic study of interventions to support medication adherence in youth with ADHD.

Brief Report: Predictors of Optimal HIV Appointment Adherence in Minority Youth: A Prospective Study

This study investigated motivation to attend appointments, self-efficacy, self-esteem, substance use, and emotional distress as predictors of optimal HIV appointment adherence in minority youth living with HIV. Utilizing a prospective design, questionnaires were collected from 82 minority youth (mean age = 20.3) at baseline and appointment adherence was assessed over the subsequent 12-month period. Appointment adherence was dichotomized to reflect optimal (i.e., at least one appointment in each of the four quarters) versus suboptimal appointment adherence (i.e., no appointment in at least one of the four quarters). High levels of motivation to attend appointments, high levels of self-efficacy, and low levels of alcohol use were associated with optimal HIV appointment adherence. Interventions promoting motivation and self-efficacy, while addressing alcohol use and awareness of appointment adherence may be promising in improving optimal HIV appointment adherence in minority youth.

Are Health Beliefs Related to Adherence Among Adolescents with Mood Disorders?

This study explored the illness perceptions, attitudes towards mental health services and adherence behaviors among a group of adolescents in treatment for mood disorders in an urban city in the United States. Seventy adolescents completed a battery of questionnaires assessing demographics (e.g., gender, family income), perceptions of illness (e.g., consequences, treatment control) and overall attitudes towards mental health services. Adolescents and their parents also reported on the youth's adherence to both psychotropic medication and mental health appointments. Simultaneous logistic regression analyses revealed that attitudes and family income made a significant and unique contribution in explaining adolescents' adherence behaviors. Interventions that help adolescents become aware of their attitudes toward mental health services and provide information on dimensions of mood disorders, such as the chronic nature of depression and the effectiveness of treatment, may impact adherence behavior. Also, among a group of families with access to services, yearly family income remained a significant barrier to attending appointments all of the time. Policy implications are discussed.

Adolescent attitudes toward psychiatric medication: the utility of the Drug Attitude Inventory

Despite the effectiveness of psychotropic treatment for alleviating symptoms of psychiatric disorders, youth adherence to psychotropic medication regimens is low. Adolescent adherence rates range from 10-80% (Swanson, 2003; Cromer & Tarnowski, 1989; Lloyd et al., 1998; Brown, Borden, and Clingerman, 1985; Sleator, 1985) depending on the population and medication studied. Youth with serious mental illness face increased potential for substance abuse, legal problems, suicide attempts, and completed suicide (Birmaher & Axelson, 2006). Nonadherence may increase the potential for negative outcomes. The Drug Attitude Inventory (DAI) was created to measure attitudes toward neuroleptics and to predict adherence in adults (Hogan, Awad, & Eastwood, 1983). No studies have been identified that have used this instrument in adolescent psychiatric populations. The present study was undertaken to evaluate the utility of the DAI for measuring medication attitudes and predicting adherence in adolescents diagnosed with mental health disorders. Structural equation modeling was used to compare the factor structure of the DAI in adults with its factor structure in adolescents. The relationship between adolescent DAI scores and adherence was examined also. The adult factor structure demonstrated only "fair" fit to the adolescent data (RMSEA = .061). Results indicated a low, but significant positive correlation (r = .205, p < .05) between DAI scores and adherence. Lack of optimal model fit suggests that DAI items may require alteration to reflect adolescent experiences with psychiatric medication more accurately. Differences between adolescents and adults in developmental stage, symptom chronicity, diagnosis, and medication class may explain why the adult model demonstrated only "fair fit" to the adolescent data and why the correlation between DAI scores and adherence was low. The DAI may be improved for use with adolescents by creating items reflecting autonomy concerns, diagnostic characteristics, treatment length, and side effect profiles relevant to adolescent experiences.