Accuracy of online medical information: the case of social media in sickle cell disease.

The medical needs of individuals with sickle cell disease (SCD) are complex. Patients with SCD experience complications such as recurrent pain episodes and increased hospitalizations. Over 70% of AYA and their parents seek medical information from the Internet; 83% inquire on sites that have interactive/social features, such as Facebook or Twitter, yet accuracy remains unclear. Our objective was to assess the accuracy of the SCD-information posted on social media. We hypothesized that most of the posted information is inaccurate. We coded one month of threads from two common SCD Facebook groups (Sickle Cell Warriors Unity and Sickle Cell Anemia) to identify the purpose of each post and the accuracy of medical information posted. Amongst both social media sites, there were 487 posts. Most of the posts were directed toward socializations (n = 311, 63.8%), while other posts mainly focused mainly on SCD and its management (n = 173, 35.5%). When looking at the medical posts, 44.9% were accurate, whereas 55.1% of the posts included inaccurate information. We found that less than half of the medical information posted on interactive social media is inaccurate. Our findings raise potentially serious implications for individuals with SCD and/or their caregivers who may rely on social media to gather more information about their or their child's disease. Our data highlight the importance of health care providers encouraging patients and parents to ask any questions they may have about SCD, given they may consult social media and Internet site that provide inaccurate information.

Geographic Distribution of Clinical Care for Transgender and Gender-Diverse Youth.

OBJECTIVES: Geographic barriers limit access to clinical care in the United States for transgender and gender-diverse (TGD) youth. Some factors differentiating access to care are variability in state laws/policies, the number of available clinical care programs and mental health providers for TGD youth. METHODS: We aggregated data from the Human Rights Campaign for pediatric clinical care programs for TGD youth, the Movement Advancement Project for state-by-state assessment of gender identity laws and policies, and Psychology Today for mental health providers for TGD youth by state. Current prevalence rates for TGD youth were applied by state with 2020 Census data. Findings were summarized as a whole and per capita by state, region, and country overall. RESULTS: The South has the highest number of TGD youth per clinic (36 465-186 377), and the lowest average equality score in gender identity laws and policies (1.96). The Midwest has the highest number of TGD youth per mental health provider (278-1422). The Northeast has the lowest number of TGD youth per clinic (11 094-56 703), the highest average equality score in laws and policies per state (17.75), and the highest average number of TGD youth per mental health providers (87-444). CONCLUSIONS: Findings support there are barriers to TGD youth care throughout the United States, especially the South and Midwest. Increasing medical and mental health care for TGD youth is likely to improve their health and well-being. Enacting gender identity protective laws/policies would allow for equal treatment and access to care among TGD youth.

Improving Uptake of Hydroxyurea in Patients with Sickle Cell Disease: A Retrospective Study of a Clinic-based Change in Consenting Practices.

INTRODUCTION: Sickle cell disease (SCD) can shorten lives and may result in severe clinical complications. Hydroxyurea (HU) is inexpensive, widely available, and National Institutes of Health (NIH) recommends HU for SCD. Despite these benefits, utilization of HU is low. Barriers to taking HU include inaccurate perceptions of serious side effects such as hair loss, a significant barrier in the African American community. However, at doses for treating SCD, the incidence of side effects is extremely low. Using a retrospective medical record review, the impact of a revised consent procedure for HU that addressed these barriers was evaluated. METHODS: SCD patients 2-20yo eligible for HU were examined. Patients prescribed HU versus those not prescribed HU were compared one year before and one year after revising consent procedures. RESULTS: Change in clinic practice (including revised consent procedures) resulted in 158% more patients agreeing to HU therapy (p<.001). DISCUSSION: The revised consent procedures are not resource intensive and easy to implement. Future research should address treatment acceptability, intimidation, and cultural sensitivity.

Understanding Treatment Adherence With the Health Belief Model in Children With Cystic Fibrosis.

OBJECTIVE: Children's health beliefs are significantly related to their adherence; however, pediatric literature has rarely tested health-related theories as a whole. The goal of the present study was to evaluate the use of the health belief model (HBM) in understanding children's adherence, both globally and to individual treatment components. METHOD: Thirty-three patient-parent dyads completed questionnaires regarding health beliefs and adherence to medical regimens. RESULTS: Multiple linear regressions found a significant relationship among the HBM variables and reports of global adherence for children and parents. For children, the HBM variables were significantly related to adherence to aerosol medications, aerosol antibiotics, metered dose inhalers, and vitamins. For parents, the HBM variables were significantly related to children's adherence to airway clearance, oral antibiotics, and vitamins. Paired sample t tests found children and parents had significantly discrepant heath beliefs. CONCLUSION: These findings provide further support for the HBM in evaluating pediatric adherence, with evidence that barriers and cues to action may be targets for early intervention. Future research using this model to identify a comprehensive way to assess, understand, and elicit change in the adherence to medical regimens for youth with chronic illness would be beneficial.

The Role of Stigma in Parental Help-Seeking for Perceived Child Behavior Problems in Urban, Low-Income African American Parents.

Significant numbers of children have diagnosable mental health problems, but only a small proportion of them receive appropriate services. Stigma has been associated with help-seeking for adult mental health problems and for Caucasian parents. The current study aims to understand factors, including stigma, associated with African American parents' help-seeking behavior related to perceived child behavior problems. Participants were a community sample of African American parents and/or legal guardians of children ages 3-8 years recruited from an urban primary care setting (N = 101). Variables included child behavior, stigma (self, friends/family, and public), object of stigma (parent or child), obstacles for engagement, intention to attend parenting classes, and demographics. Self-stigma was the strongest predictor of help-seeking among African American parents. The impact of self-stigma on parents' ratings of the likelihood of attending parenting classes increased when parents considered a situation in which their child's behavior was concerning to them. Findings support the need to consider parent stigma in the design of care models to ensure that children receive needed preventative and treatment services for behavioral/mental health problems in African American families.

Perception of primary care pediatricians of effectiveness, acceptability, and availability of mental health services.

Approximately 20% of children in the United States meet the criteria for a psychosocial disorder; however, less than 25% of these children receive psychosocial services. A questionnaire assessed primary care pediatricians' (PCPs) perceptions of effectiveness, availability, and burden of treatment options for children's psychosocial difficulties and parents' acceptance and adherence with these treatments. Repeated measures analysis of variance found that PCPs are more likely to refer children with psychosocial problems to a mental health professional than to prescribe medication. PCPs prescribe medications more than counseling parents themselves or watchful waiting. PCPs reported children's behavior is more likely to improve with mental health services than with medication, though medication is the most available treatment. PCPs believe parent training programs are very effective for treating children's behavior problems, but believe parents are more accepting and compliant with other treatments. Findings indicate PCPs' perceptions of availability and acceptability of treatment options drive their treatment recommendations of psychosocial problems.

The role of stigma in parental help-seeking for child behavior problems.

The present study examined the relationship between stigma and parental help-seeking after controlling for demographics, child behavior, and barriers to treatment. One hundred fifteen parents of children ages 4 to 8 years were surveyed during well-child visits in a rural pediatric primary care practice. Parental perceptions of stigma toward parents and children were both assessed. Parents believe that children are more likely to be stigmatized by the public and personally impacted by stigma. In linear regression analyses, parents rated themselves as more likely to attend parenting classes with lower levels of self-stigma and greater levels of personal impact of stigma. Stigma toward the child was not associated with help-seeking. Child behavior moderated the relationship between stigma and parental help-seeking. When referring parents to treatment, providers should address potential stigma concerns. Future research should assess both the impact of the stigma of attending treatment and the stigma of having a child with behavior problems.

Impact of location and availability of behavioral health services for children.

Literature suggests advantages for co-locating behavioral health care in primary care. We compared the impact of location of services on attendance at behavioral health appointments when access to care was assured for externalizing behavior problems with referral as usual. Two primary care pediatric practices had an evidence-based parenting program co-located in the practice for parents of children aged 2-12 years and two practices had the program available using an enhanced-referral procedure for locations external to the practices. The program was available at the regional children's hospital (referral as usual). During an 8-month period, the rate of attendance at first appointments was significantly higher in the co-located than the enhanced referral condition (.38 and .12 % of patient visits, respectively; χ(2) = 13.32; p < .0003; OR = 3.10; 95 % CI: 1.63, 5.89). These outcomes, while low, were better than the near 0 rate of attendance to referral as usual. Availability of behavioral health services in both conditions increased rates of attended appointments. However, the low rates of attendance indicate increasing availability of services, alone, is not sufficient to decrease the unmet need of children with behavioral problems. Factors other than availability must be addressed in order to improve outcomes for children.

Supervision to prevent childhood unintentional injury: developmental knowledge and self-efficacy count.

Caregiver developmental knowledge was tested as a moderator of the association between caregiver-perceived self-efficacy and perceived supervision to prevent childhood unintentional injury. Caregivers (N = 123; 95 mothers and 28 fathers) of children (M = 3.5 ± 1.2 years, 49.6% female, 80.8% Caucasian) were recruited from pediatric primary care offices and local message boards. All caregivers completed self-report questionnaires on perceived self-efficacy, developmental knowledge, and perceived supervision to prevent injury. Separate hierarchical linear regression models were conducted to test moderation for mothers and fathers. The interaction effect of perceived self-efficacy and developmental knowledge significantly predicted maternal-perceived supervision, R (2) change = .06, F(1, 86) = 6.76, p < .01. No significant findings were detected for fathers. Models of studying injury prevention that consider complex cognitive-behavioral interactions and their potential modifiable role in the development of injury-prevention practices may elucidate upon the attitude-practice gap currently identified in the literature.

Pediatrician identification of child behavior problems: the roles of parenting factors and cross-practice differences.

While most primary care pediatricians acknowledge the importance of identifying child behavior problems, fewer than 2% of children with a diagnosable psychological disorder are referred for mental health care in any given year. The present study examined the potential role of parental characteristics (parental affect, parenting style, and parenting self-efficacy) in pediatrician identification of child behavior problems, and determined whether these relationships differed across practices. Parents of 831 children between 2 and 16 years completed questionnaires regarding demographic information, their child's behavior, their affect, their parenting style, and their parenting self-efficacy. Pediatricians completed a brief questionnaire following visits in four community-based primary care practices in the Midwest. Logistic regressions controlling for child behavior and demographic predictors of pediatrician identification found that an authoritarian parenting style, in which parents yell or strongly negatively react to problem behavior, was negatively associated with likelihood of identification in the overall sample. However, the variables that were predictive of pediatrician identification differed depending on the specific practice. Parental characteristics can aid in understanding which children are likely to be identified by their pediatrician as having behavioral problems. The finding that practices differed on which variables were associated with pediatrician identification suggests the need to potentially individualize interventions to certain physicians and practices to improve identification of child behavior problems in primary care.

Impact of age and gender on adherence to infection control guidelines and medical regimens in cystic fibrosis.

RATIONALE: The goal of the present research was to examine the impact of age and gender on adherence to both infection control (IC) guidelines and traditional medical treatments in a cystic fibrosis (CF) population. Adherence behaviors are consistently suboptimal in chronic illness populations, particularly pulmonary diseases; understanding the factors related to adherence behaviors in CF can aid in the development of interventions to promote adherence. METHOD: Participants consisted of 74 individuals with CF ages 9 years and above. Participants were asked to complete questionnaires designed to assess demographic data, treatment adherence, and health beliefs. RESULTS: With respect to IC guidelines, chi-square analyses revealed significant age differences in adherence behaviors such that the young adult subsample was least adherent to IC (χ2 = 15.10, df = 6, P = 0.020). Next, a 4 (age: child, adolescent, young adult, adult) × 2 (gender) completely between subjects analysis of variance (ANOVA) was conducted on medical treatment adherence. There was a significant main effect for age [F(3, 65) = 2.940, P = 0.040, ηP2 = 0.119] indicating that the adolescent subsample had the most adherence challenges. Gender was nonsignificant across both adherence types. CONCLUSIONS: Study findings are suggestive of age-related differences in adherence behaviors across both IC and medical regimens and support the use of developmentally sensitive approaches to assessment and interventions addressing adherence.

Identification of families at risk for behavior problems in primary care settings.

OBJECTIVE: Parenting practices and cognitions are associated with child externalizing behavior problems. Parenting programs targeting these areas are effective in improving child behavior but are limited to the extent to which they reach at-risk families. This study compared the parenting practices and cognitions of parents with high and low tolerance for misbehavior to parents of children with clinically significant behavior problems to evaluate the utility of assessing parental tolerance for identifying children at risk for externalizing behavior problems. METHODS: Participants were 1014 parents of children between the ages of 2 and 16 years presenting for primary care. Parents completed the Eyberg Child Behavior Inventory, Parenting Scale, and Parenting Sense of Competence Scale. RESULTS: Parents with high and low tolerance resembled the clinically significant problem groups in both parental behaviors and cognitions. Differences regarding parental cognitions were consistent across all age groups assessed. CONCLUSIONS: This study demonstrated the clinical utility of interpreting caregiver responses to questions about the intensity of their child's behavior problems and parental tolerance for these problems separately. Results indicated that parents with high or low tolerance for their child's behavior are at risk of having children with clinically significant behavior problems. Parents who are concerned about their child's behavior, even if their child does not currently exhibit clinically significant behavior problems, are likely to profit from early intervention for behavior problems.

Compliance in cystic fibrosis: an examination of infection control guidelines.

The goal of this research was to begin the process of evaluating acceptability of infection control (IC) recommendations to CF patients and their families, determine whether compliance with IC guidelines differs from compliance with traditional CF medical treatment with respect to the variables predictive of compliance, and assess which patients are most likely to comply with IC recommendations. Participants were recruited during routine outpatient visits at a regional CF center located in a pediatric hospital. The sample included 44 child and adolescent patients, aged 9-18 years and their guardian, and 27 adult patients. All patients completed questionnaires and interviews. Results of this preliminary study suggest that many individuals with CF are unaware of or unconcerned with the risks involved in infection transmission via social contact with other CF patients. Further, most participants reported that they could benefit from friendships with other CF patients. Health belief variables were found to be predictive of compliance with both IC guidelines and traditional medical treatments in the adult and parent sample, but not in the child sample. Possible explanations for study findings are discussed and recommendations for future research on IC compliance are highlighted.

Brief report: the relationship between chronic illness and identification and management of psychosocial problems in pediatric primary care.

OBJECTIVE: To compare identification, management, and barriers to treatment for psychosocial concerns in children with and without a chronic illness. METHODS: Using data from the Child Behavior Study (CBS), provider rates of identification, treatment, and reports of barriers to treatment were compared in children with and without a chronic illness. Of the 21,065 children ranging in age from 4 to 15 years, 808 children were identified with a chronic illness and were matched on eight demographic variables with 763 healthy children. RESULTS: Providers identified psychosocial concerns in significantly more children with a chronic illness (36.8%) than healthy children (20.2%). Among children with psychosocial concerns, rates of identification, treatment, and barriers to treatment did not differ across the two groups. CONCLUSIONS: Chronic illness did not present more barriers to the management of psychosocial concerns. Increased rates of identification and treatment of psychosocial concerns require attention to general barriers to treatment and screening.

Mothers' help-seeking for pediatric psychosocial problems.

Pediatricians have been criticized for failing to identify psychosocial problems in their pediatric patients. Maternal disclosure is important for identification; however, many mothers fail to discuss their concerns with the pediatrician. The present study explored the hypothesis that mothers are seeking and receiving help from sources other than the pediatrician. Participants were 50 mothers who brought their 4-13-year-old child for a routine health supervision visit at a county-funded hospital serving primarily low-income families. Results indicated that mothers actively seek help from multiple sources and find the help they receive useful. Clinical implications of these findings are discussed.

Use of information about maternal distress and negative life events to facilitate identification of psychosocial problems in children.

BACKGROUND: Despite the availability of effective screening measures, primary care physicians fail to identify and manage many children with psychosocial problems. Physicians often have information about significant negative events in a child's life. The present study evaluated the potential utility of using information about negative life events to facilitate physician identification of children with psychosocial problems. METHODS: Negative life events, maternal distress and child psychosocial functioning measures were completed by 185 mothers of children, aged 4-12 years. Family physicians provided data about the children's psychosocial functioning. RESULTS: Mothers identified 15.1% (n = 28) of the children as having psychosocial problems. Physicians correctly identified 21% (n = 6) of these at-risk children. Physician use of negative life events would have led to the identification of 39.2% (n = 11) at-risk children. Information about maternal distress and negative life events would have resulted in an additional 18% (n = 5) of children identified by the physicians. Information about maternal distress alone would have resulted in an identification rate of 53.5% (n = 15). CONCLUSIONS: Using information about negative events in a child's life, physicians could improve their rate of identification of children with psychosocial problems. Children who have had more than two negative events in their lives are at increased risk for psychosocial problems.