Celiac disease symptom profiles and their relationship to gluten-free diet adherence, mental health, and quality of life.

BACKGROUND: A subgroup of adults with celiac disease experience persistent gastrointestinal and extraintestinal symptoms, which vary between individuals and the cause(s) for which are often unclear. METHODS: The present observational study sought to elucidate patterns of persistent symptoms and the relationship between those patterns and gluten-free diet adherence, psychiatric symptoms, and various aspects of quality of life (QOL) in an online sample of adults with celiac disease. U.S. adults with self-reported, biopsy-confirmed celiac disease (N = 523; Mage = 40.3 years; 88% women; 93.5% White) voluntarily completed questionnaires as part of the iCureCeliac® research network: (a) Celiac Symptoms Index (CSI) for physical symptoms and subjective health; (b) Celiac Dietary Adherence Test for gluten-free diet adherence; (c) PROMIS-29, SF-36, and Celiac Disease Quality of Life Survey for psychiatric symptoms and QOL. Symptom profiles were derived using latent profile analysis and profile differences were examined using auxiliary analyses. RESULTS: Latent profile analysis of CSI items determined a four-profile solution fit best. Profiles were characterized by: (1) little to no symptoms and excellent subjective health (37% of sample); (2) infrequent symptoms and good subjective health (33%); (3) occasional symptoms and fair to poor subjective health (24%); (4) frequent to constant symptoms and fair to poor subjective health (6%). Profiles 2 and 3 reported moderate overall symptomology though Profile 2 reported relatively greater extraintestinal symptoms and Profile 3 reported relatively greater gastrointestinal symptoms, physical pain, and worse subjective health. Profiles differed on anxiety and depression symptoms, limitations due to physical and emotional health, social functioning, and sleep, but not clinical characteristics, gluten-free diet adherence, or QOL. Despite Profile 3's moderate symptom burden and low subjective health as reported on the CSI, Profile 3 reported the lowest psychiatric symptoms and highest quality of life on standardized measures. CONCLUSIONS: Adults with celiac disease reported variable patterns of persistent symptoms, symptom severity, and subjective health. Lack of profile differences in gluten-free diet adherence suggests that adjunctive dietary or medical assessment and intervention may be warranted. Lower persistent symptom burden did not necessarily translate to better mental health and QOL, suggesting that behavioral intervention may be helpful even for those with lower celiac symptom burden.

Psychological Considerations for Food Intolerances: Celiac Sprue, Eosinophilic Esophagitis, and Non-Celiac Gluten Sensitivity.

Several chronic digestive conditions are physiologically based on food intolerance, including celiac disease, nonceliac gluten sensitivity, and eosinophilic esophagitis. Patients are expected to follow medically prescribed diets to eliminate identified food triggers to control symptoms. However, the psychological impacts of these dietary approaches are largely unaddressed in clinical practice. Hypervigilance and anxiety regarding food and symptoms, and disordered eating, may emerge and negatively affect outcomes. Clinicians working with pediatric and adult populations with food intolerances should be aware of these psychological comorbidities, and equally emphasize effective ways to help patients manage the mental and physical aspects of their condition.

Twitter Trends for Celiac Disease and the Gluten-Free Diet: Cross-sectional Descriptive Analysis.

Background: Few studies have systematically analyzed information regarding chronic medical conditions and available treatments on social media. Celiac disease (CD) is an exemplar of the need to investigate web-based educational sources. CD is an autoimmune condition wherein the ingestion of gluten causes intestinal damage and, if left untreated by a strict gluten-free diet (GFD), can result in significant nutritional deficiencies leading to cancer, bone disease, and death. Adherence to the GFD can be difficult owing to cost and negative stigma, including misinformation about what gluten is and who should avoid it. Given the significant impact that negative stigma and common misunderstandings have on the treatment of CD, this condition was chosen to systematically investigate the scope and nature of sources and information distributed through social media. Objective: To address concerns related to educational social media sources, this study explored trends on the social media platform Twitter about CD and the GFD to identify primary influencers and the type of information disseminated by these influencers. Methods: This cross-sectional study used data mining to collect tweets and users who used the hashtags #celiac and #glutenfree from an 8-month time frame. Tweets were then analyzed to describe who is disseminating information via this platform and the content, source, and frequency of such information. Results: More content was posted for #glutenfree (1501.8 tweets per day) than for #celiac (69 tweets per day). A substantial proportion of the content was produced by a small percentage of contributors (ie, "Superuser"), who could be categorized as self-promotors (eg, bloggers, writers, authors; 13.9% of #glutenfree tweets and 22.7% of #celiac tweets), self-identified female family members (eg, mother; 4.3% of #glutenfree tweets and 8% of #celiac tweets), or commercial entities (eg, restaurants and bakeries). On the other hand, relatively few self-identified scientific, nonprofit, and medical provider users made substantial contributions on Twitter related to the GFD or CD (1% of #glutenfree tweets and 3.1% of #celiac tweets, respectively). Conclusions: Most material on Twitter was provided by self-promoters, commercial entities, or self-identified female family members, which may not have been supported by current medical and scientific practices. Researchers and medical providers could potentially benefit from contributing more to this space to enhance the web-based resources for patients and families.

Evaluating provider communication in pediatric chronic kidney disease care using a global coding system.

OBJECTIVE: Among adolescents and young adults (AYAs) with chronic illness, effective provider communication is essential for patient-centered care during a sensitive developmental period. However, communication in chronic illness care for AYAs is not well studied. Our objectives were to describe the provider communication skills in pediatric chronic kidney disease (CKD) care visits; and determine if communication skills differ by AYA characteristics. METHODS: We adapted a global consultation rating system for pediatric subspecialty care using audiotaped clinic encounters of 18 pediatric nephrologists with 99 AYAs (age M(SD) = 14.9(2.6)) with CKD stages 1-5 and 96 caregivers. We hypothesized that provider communication skills would differ by AYA characteristics (age, gender, and race). RESULTS: The strongest provider skills included initiating the session and developing rapport; lowest rated skills were asking patient's perspective and checking understanding. Communication scores did not consistently differ by AYA age or race, but were rated higher with female AYAs in several domains (ps<0.05). CONCLUSIONS: Pediatric providers generally had adequate or good communication scores with AYAs, but improvement in certain skills, particularly with male AYAs, may further support patient-centered care. PRACTICE IMPLICATIONS: To achieve consistent, patient-centered communication with AYAs, an observation-based global assessment may identify areas for provider improvement.

Mental Health Disorders and Psychosocial Distress in Pediatric Celiac Disease.

OBJECTIVES: Celiac disease (CeD) has been associated with increased mental health disorders (MHD) and psychosocial distress in children, which may complicate treatment with the gluten-free diet (GFD). This single-center cross-sectional study examined psychological comorbidities in children with CeD to assess psychological needs in CeD care. METHODS: Participants were 73 parents (95% mothers) of children (ages 3-18) attending a multidisciplinary celiac disease clinic. Parents completed electronic surveys about their child's MHD history, psychological symptoms, and GFD experiences. Rates of MHD were calculated and compared with National Institute of Mental Health population-level data. Differences in psychosocial symptoms and GFD experiences were examined based on child age, time since CeD diagnosis, and MHD. RESULTS: Thirty-four percentage of children had at least 1 MHD; anxiety disorders (16%, P < 0.001) and attention-deficit/hyperactivity disorder (ADHD; 16%, P = 0.01) were more common than general population rates. More than 1 quarter of parents reported current child psychosocial distress (28%-39%), and approximately half reported parent stress (51%) and financial burden (46%) associated with the GFD. Parents of children with new CeD diagnoses reported lower confidence in the GFD (P < 0.01) but MHD, stress, and financial burden did not differ by time since CeD diagnosis. Children with MHD had more anxiety, anger, overall distress, and parent distress than those without MHD (Ps < .05). CONCLUSIONS: Comorbid CeD and MHD was common and was associated with increased child and parent psychosocial distress. Our findings emphasize the importance of psychological screening and services to assess for and treat comorbid MHD and to mitigate psychosocial distress associated with the GFD.

The Impact of Celiac Disease on Caregivers' Well-being: An Integrative Review.

OBJECTIVES: A diagnosis of celiac disease (CD) requires individuals to adopt a strict gluten-free diet. As children with CD must rely on their caregivers for guidance and support with managing the gluten-free diet, CD may challenge the caregiver's emotional and social well-being. The primary objective of this mixed-methods systematic review was to synthesize research investigating the impact of CD on caregiver's well-being. METHODS: Five databases were systematically searched from 1990 to 2018 to identify all empirical studies that assessed well-being in caregivers of children (0-18 years) with CD. Qualitative and quantitative data were extracted separately before being integrated to explore key themes across the studies. RESULTS: Twelve studies were identified that explored the well-being of caregivers of children with CD (3 qualitative, 9 quantitative), reporting on 665 caregivers. The quality of evidence was limited across studies. Synthesis of results revealed 3 themes (Caregiver Responsibility, Caregiver Well-Being and Concern for Child's Health, Implications for the Family) describing the impact of a child with CD on caregiver well-being. CONCLUSIONS: Caregivers of children with CD may experience difficulties that impact their well-being; specific difficulties identified included the impact of caregivers' social activities, finances, and anxiety. The findings detailed in this review point toward factors that may guide health care personnel to provide support for the caregivers of children with CD.

Psychological Needs and Services in a Pediatric Multidisciplinary Celiac Disease Clinic.

This study aims to describe the psychological needs in children with celiac disease (CD) and to examine the feasibility of psychological consultation in a multidisciplinary clinic. Participants (N = 69) included children with CD and their parents who completed a pre-clinic mental health survey and a 30-min psychological consultation as part of a multidisciplinary clinic (including gastroenterology, nutrition, education, neurology, and neuropsychology). Quantitative and qualitative analyses examined psychological needs, experiences, and satisfaction. The psychologist identified clinically significant symptoms and provided referrals in 49% of children. There were no significant differences by time since CD diagnosis. During the psychology consultation, families discussed emotional adjustment, impact on life and physical well-being, and management of the gluten-free diet. Parents reported high levels of satisfaction from the clinic visit. We identified frequent psychological needs in pediatric CD. The multidisciplinary approach may be a feasible model for specialized, optimal treatment in this population.

A Quantitative Assessment of Gluten Cross-contact in the School Environment for Children With Celiac Disease.

OBJECTIVES: A gluten-free (GF) diet is the primary treatment for celiac disease (CD). Gluten is used in schools, particularly in early childhood, art, and home-economics classrooms. This study aimed to measure gluten transfer from school supplies to GF foods that a child with CD may eat. Also, to measure efficacy of washing techniques to remove gluten from hands and tables. METHODS: Five experiments measured potential gluten cross-contact in classrooms: Play-Doh (n = 30); baking project (n = 30); paper mâché (n = 10); dry pasta in sensory table (n = 10); cooked pasta in sensory table (n = 10). Thirty participants ages 2 to 18 were enrolled. Following activities, gluten levels were measured on separate slices of GF bread rubbed on participant's hands and table surfaces. Participants were assigned 1 of 3 handwashing methods (soap and water, water alone, or wet wipe). Repeat gluten transfer measurements were taken from hands and tables. Gluten measurements made using R-Biopharm R7001 R5-ELISA Sandwich assay. RESULTS: Paper mâché, cooked pasta in sensory tables, and baking project resulted in rates of gluten transfer far greater than the 20 ppm threshold set by Codex Alimentarius Commission. Play-Doh and dry pasta, however, resulted in few gluten transfers to GF bread >20 ppm. Soap and water was consistently the most effective method for removing gluten, although other methods proved as effective in certain scenarios. CONCLUSIONS: The potential for gluten exposure at school is high for some materials and low for others. For high-risk materials, schools should provide GF supplies and have a robust strategy to prevent gluten cross-contact with food.

The Role of Patient-Physician Communication on the Use of Hydroxyurea in Adult Patients with Sickle Cell Disease.

OBJECTIVE: This qualitative study analyzed the perspective of patients living with sickle cell disease (SCD) on their process of deciding whether to take hydroxyurea (HU), and the role of physician communication in patients' decision-making process. METHODS: From October 2015 to July 2016, we conducted semi-structured interviews among patients with SCD (N = 20) that were audio-recorded and transcribed. Participants were ≥ 18 years old, a patient of an urban adult sickle cell center, able to provide informed consent, and English-speaking. We iteratively developed codes and used thematic analysis to organize the key themes. RESULTS: Most participants were female (65%), middle aged (M = 44, SD = 12.2), and 55% were prescribed HU for an average of 10.4 (SD = 4.7) years. Participants described 3 key factors that influenced their decision regarding HU treatment: (1) lifestyle, (2) health status, and (3) HU characteristics. Four themes emerged about provider communication and HU treatment decisions: (1) provider's advisement, (2) shared decision-making, (3) "wrestled," and (4) not feeling heard. CONCLUSION: Providers who engaged in shared decision-making empowered participants to decide whether to start HU treatment. Participants who felt their providers were not listening to their concerns expressed disengaging from HU treatment. During discussions about HU with patients living with SCD, providers must understand the multi-faceted aspects that impact patients' decision and empower patients to engage in such discussions. Further research is needed to understand the role of shared decision-making among patients with SCD to improve management of SCD.

Psychological Comorbidities in Childhood Celiac Disease: A Systematic Review.

OBJECTIVES: Mental health disorders comorbid to chronic illness are associated with higher medical care utilization and costs for adults and children. Celiac disease (CD) has a substantial perceived treatment burden and is associated with higher rates of psychopathology in adults. However, establishing the risk for psychological comorbidities in children with CD is still needed. This study aimed to review existing research on mental health concerns in pediatric CD and propose an initial psychosocial research and clinical agenda. METHODS: Databases, including Scopus and PubMed. Additional publications were accessed and reviewed from the references provided by initially identified publications. Two investigators screened studies using predetermined criteria (peer-reviewed, published in English, electronically available, inclusive of child participants, and examining CD). One investigator initially extracted data, with subsequent review by the second investigator. RESULTS: Twenty-six publications met criteria for the current review (16 case-control, 9 observational, and 1 clinical trial). Publications were heterogeneous in symptoms examined, methodology, and population characteristics. Several studies found elevated risk for psychological comorbidities and poorer quality of life in children with CD. However, many studies were limited by small sample sizes and inconsistent or nonvalidated approaches to measuring psychological symptoms. CONCLUSIONS: Many existing studies have found increased prevalence of comorbid CD and psychological symptoms or diagnoses. Therefore, screening for psychological symptoms in CD and also screening for CD in psychological clinic populations is needed. We have identified the importance for further study of mechanisms and risk, and identify preliminary priorities for psychosocial research and clinical care in pediatric CD.

Patient Health Beliefs and Characteristics Predict Longitudinal Antihypertensive Medication Adherence in Adolescents With CKD.

Objective: To investigate longitudinal associations of health beliefs, which included self-efficacy, outcome expectancies, and perceived barriers, and demographic risk factors (i.e., age, gender, race, and family income) with antihypertensive medication adherence in adolescents with chronic kidney disease (CKD) over 24 months. Method: The sample included 114 adolescents (M age = 15.03 years, SD = 2.44) diagnosed with CKD. Adolescents reported their self-efficacy for taking medications, medication outcome expectancies, and barriers to adherence at baseline and 12 and 24 months after baseline. Antihypertensive medication adherence was assessed via electronic monitoring for 2 weeks at baseline and 6, 12, 18, and 24 months after baseline. Results: Adherence increased and then decreased over the 2-year study period (inverted U-shape). Self-efficacy, outcome expectancies, and barriers did not change over time. Older adolescent age, female gender, African American race, <$50,000 annual family income, and public health insurance were associated with lower adherence. However, family income was the primary demographic risk factor that predicted adherence over time (≥$50,000 annual family income was longitudinally associated with higher adherence). Higher self-efficacy and more positive and less negative outcome expectancies across time were also associated with higher antihypertensive medication adherence across time. Conclusions: Clinical interventions should be developed to target medication self-efficacy and outcome expectancies to improve long-term antihypertensive medication adherence in adolescents with CKD. Family income may be considered when conceptualizing contextual factors that likely contribute to adolescents' consistent challenges with medication adherence over time.

Does a multimethod approach improve identification of medication nonadherence in adolescents with chronic kidney disease?

BACKGROUND: Medical provider assessment of nonadherence is known to be inaccurate. Researchers have suggested using a multimethod assessment approach; however, no study has demonstrated how to integrate different measures to improve accuracy. This study aimed to determine if using additional measures improves the accurate identification of nonadherence beyond provider assessment alone. METHODS: Eighty-seven adolescents and young adults (AYAs), age 11-19 years, with chronic kidney disease (CKD) [stage 1-5/end-stage renal disease (ESRD)] and prescribed antihypertensive medication, their caregivers, and 17 medical providers participated in the multisite study. Five adherence measures were obtained: provider report, AYA report, caregiver report, electronic medication monitoring (MEMS), and pharmacy refill data [medication possession ratio (MPR)]. Concordance was calculated using kappa statistic. Sensitivity, specificity, positive predictive power, and negative predictive power were calculated using MEMS as the criterion for measuring adherence. RESULTS: There was poor to fair concordance (kappas = 0.12-0.54), with 35-61% of AYAs classified as nonadherent depending on the measure. While both providers and MEMS classified 35% of the AYAs as nonadherent, sensitivity (0.57) and specificity (0.77) demonstrated poor agreement between the two measures on identifying which AYAs were nonadherent. Combining provider report of nonadherence and MPR < 75% resulted in the highest sensitivity for identifying nonadherence (0.90) and negative predictive power (0.88). CONCLUSIONS: Nonadherence is prevalent in AYAs with CKD. Providers inaccurately identify nonadherence, leading to missed opportunities to intervene. Our study demonstrates the benefit to utilizing a multimethod approach to identify nonadherence in patients with chronic disease, an essential first step to reduce nonadherence.

Multiple domains of stress predict postpartum depressive symptoms in low-income Mexican American women: the moderating effect of social support.

Prenatal stress can have a lasting effect on women's mental health after childbirth. The negative effects may be particularly salient in women from low income and ethnic minority backgrounds, who are at increased risk for postpartum depression. However, social support may have the potential to attenuate the negative impact of stress. The present study evaluated 269 Mexican American women (ages 18-42; 83 % Spanish-speaking; median income $10,000-$15,000) for prenatal stress (daily hassles, family stress, partner stress, and culture-specific stress) in relation to depressive symptoms 6 weeks postpartum. Prenatal social support was examined as a buffer against the impact of prenatal stress. Partner stress, family stress, and daily hassles uniquely predicted depressive symptoms. Moderate and high levels of social support attenuated risk for depression due to family stressors. Prenatal interpersonal and daily stressors negatively impact the mental health of women after birth, but social support can mitigate some of these effects. Among Mexican American pregnant women, effective interpersonal support and stress management may be associated with reduced risk for postpartum depression.

Prenatal stress, partner support, and infant cortisol reactivity in low-income Mexican American families.

Maternal exposure to significant prenatal stress can negatively affect infant neurobiological development and increase the risk for developmental and health disturbances. These effects may be pronounced in low SES and ethnic minority families. We explored prenatal partner support as a buffer of the impact of prenatal stress on cortisol reactivity of infants born to low-income Mexican American women. Women (N=220; age 18-42; 84% Spanish-speaking; 89% foreign born; modal family income $10,000-$15,000) reported on economic stress and satisfaction with spousal/partner support during the prenatal period (26-38 weeks gestation), and infant salivary cortisol reactivity to mildly challenging mother-infant interaction tasks was assessed at women's homes at six weeks postpartum. Multilevel models estimated the interactive effect of prenatal stress and partner support on cortisol reactivity, controlling for covariates and potential confounds. Infants born to mothers who reported high prenatal stress and low partner support exhibited higher cortisol reactivity relative to those whose mothers reported high support or low stress. The effects did not appear to operate through birth outcomes. For low-income Mexican American women, partner support may buffer the impact of prenatal stress on infant cortisol reactivity, potentially promoting more adaptive infant health and development.