How to make gluten‐free friends: A quasi‐experimental study on the psychosocial benefits of celiac camps

Fear of stigmatization, high perceived partner burden, or refraining from self-disclosure may manifest in romantic rejection concerns among adolescents with celiac disease (CD), potentially impacting their health-related quality of life (HRQOL). This study examined the prevalence, predictors, and consequences of romantic rejection concerns among adolescents and young adults with CD. A cross-sectional online survey was conducted among 165 German adolescents and young adults (aged 14-22) with self-reported CD. Participants completed measures of romantic rejection concerns, illness identity, self-esteem, peer support, and CD-specific HRQOL. Participants reported moderate levels of concerns about the impact of CD on their romantic relationships, with no significant gender differences. Participants involved in romantic relationships expressed lower concerns of rejection, but similar preference for a "gluten-free partner." Hierarchical regression analysis revealed that higher illness acceptance and peer support predicted lower rejection concerns. Significant interactions emerged between self-esteem and illness acceptance, and between self-esteem and peer support. Higher illness acceptance predicted fewer rejection worries only among those with high self-esteem, while peer support played a mitigating role only for those with low self-esteem. Romantic rejection concerns significantly predicted lower CD-specific HRQOL across all domains. Anxieties about CD's impact on romantic relationships are prevalent among adolescents and may hinder their HRQOL. The findings highlight the complex interplay between self-esteem, illness identity, and social support in shaping romantic concerns. Targeted interventions focusing on peer support and fostering positive illness identity are recommended to alleviate rejection fears and improve HRQOL among youth with CD.

Systematic review with meta-analysis: Dietary adherence influences normalization of health-related quality of life in coeliac disease

Quality of Life and Self-Esteem for Children With Urinary Urge Incontinence and Voiding Postponement

Celiac disease profoundly impacts individuals' daily lives, prompting the need to assess health-related quality of life (HRQoL) in affected children. This study aimed to evaluate HRQoL among Jordanian children with celiac disease, considering sex, dietary adherence, presence or absence of growth issues, concurrent chronic diseases, and duration since diagnosis. A cross-sectional study invited children from the Celiac Disease Care Providers Society to complete an online Kidscreen-52 questionnaire in Arabic. Descriptive statistics and T-scores for 10 health domains were analyzed against international benchmarks. Cohorts were stratified by concurrent diseases, disease duration, dietary adherence, and growth issues, with comparisons made using t-tests and Cohen's ds. Among 400 registered members, 126 children (31.5%) participated. Males exhibited inferior HRQoL in multiple domains compared to the general population, with recent studies corroborating findings in females. Males with chronic diseases reported significantly worse moods and self-perception. Females with growth issues faced academic challenges and financial constraints, while those not strictly adherent toa gluten-free diet reported strained parental relationships and challenges in their home environment. This study reveals a marked decline in HRQoL among Jordanian children with celiac disease, emphasizing the need for educational initiatives targeting patients and healthcare providers, alongside broader advocacy for gluten-free diet support. Further research is imperative to identify additional contributing factors and implement community-level interventions.

Health-related quality of life (HRQoL) is an important outcome in chronic disease. Generic HRQoL questionnaires may not adequately reflect disease-specific challenges in coeliac disease. We investigated whether disease-specific HRQoL questionnaires add relevant information to generic measures that will better help to identify patients experiencing problems. We performed a cross-cultural validation of the Celiac Disease Quality Of Life-survey (CD-QOL), next we developed and validated a new disease-specific HRQoL questionnaire, and finally compared their predictive validity with the disease-generic RAND SF-36/SF-12 in 825 patients (mean age: 56.1±15.8 years) with (reported) biopsy-proven coeliac disease. Internal consistency and convergent, discriminative and predictive validity of the questionnaires was determined. Two Dutch versions of the CD-QOL were validated, consisting of 14 and six items, respectively (CD-QOL-14-NL, CD-QOL-6-NL). We developed and validated the CeliacQ-27, which has 27-items across three subscales (Limitations, Worries and Impact on daily life), and a short seven-item version, the CeliacQ-7. All questionnaires had excellent psychometric properties and differentiated well between active disease and clinical remission and strict versus poor dietary adherence. The added value of the disease-specific questionnaires to the generic HRQoL measure to the explained variance of symptom burden and dietary adherence was limited. HRQoL in patients with coeliac disease can easily be assessed by brief generic as well as disease-specific measures. Disease-specific questionnaires, however, provide more explicit information on disease-relevant areas of functioning.

Hepatitis C treatment and quality of life – You can’t always get what you want, but you might get what you need

Impact of Comorbidities on Health-related Quality of Life in Nontransplant Eligible Patients With Newly Diagnosed Multiple Myeloma.

The objective of the study is to examine the association between the lack of follow-up for celiac disease (CD) during childhood and dietary adherence, disease remission, and health-related quality of life (HRQoL). We invited 243 randomly selected children diagnosed with CD in 2013-2018 in Gothenburg, Sweden, and 162 consented to participate (67%). We retrieved information on clinical follow-up and current wellbeing using medical and laboratory records data, as well as validated questionnaires on symptoms of CD, dietary adherence, and HRQoL. We analyzed tissue-transglutaminase antibodies (tTGA) as a measure of disease remission. We defined lack of follow-up as no CD-related physician/dietician-led visit or measurement of tTGA over the past 24 months of study enrollment. The mean age at study enrolment was 12.7 (range 7.8-18.2) years. Out of 162 children with an average disease duration of 5.3 (range 2.3-8.8) years, 23 (14%) lacked follow-up. tTGA had normalized in 94% [95% confidence interval (CI) = 71%-100%] of children without follow-up versus 91% (95% CI: 85%-95%) of children with continued follow-up. Of children without follow-up, 65% (95% CI: 38%-86%) reported a dietary adherence score indicating very good adherence, versus 72% (95% CI: 63%-80%) of those with continued follow-up. Also, lack of follow-up was not significantly associated with growth, symptom scores, or HRQoL. In this regional cohort study of mostly older children and adolescents, lack of follow-up for CD was not significantly linked to dietary adherence, disease remission, or HRQoL. How these results hold in larger, unselected samples with longer follow-up, including transition to adult care, warrants further study.

Allergy: a global problem. Quality of life.

Determinants of Quality of Life for Patients With Kidney Stones

To evaluate the impact of celiac disease (CD) and the gluten-free diet (GFD) on the health-related quality of life (HRQoL) in children with CD in the United States using validated measures. We hypothesize that CD negatively impacts the child and caregivers' HRQoL. Participants included children with a confirmed diagnosis of CD and their caregivers (n = 246) seen in a CD multidisciplinary clinic. Caregivers completed the Pediatric Quality of Life (PedsQL) parent-proxy scale to report on their child's HRQoL and the Family Impact Module (FIM), which assesses the impact of caring for a child with a chronic illness. Their children completed the age-appropriate PedsQL. PedsQL and FIM results were compared to published data for children with gastroenterological conditions and a healthy cohort using non-parametric tests. Children with CD reported significantly lower HRQoL than reports from healthy controls across all PedsQL domains (P < 0.001, Cohen d = 0.8), and lower compared to children with other organic gastrointestinal conditions in Social Functioning (P < 0.001, Cohen d = 0.5) and overall Psychosocial Functioning (P < 0.001, Cohen d = 0.3) domains. Results from the caregiver's report on their own HRQoL were significantly worse than that reported by historical controls in the domains of Communication (P < 0.001, Cohen d = 0.3) and Worry (P < 0.001, Cohen d = 0.8), yet similar on all other domains. In our population, CD is associated with low HRQoL scores for both children and their caregivers. Screening children and families for HRQoL can identify patients and families in need of additional support in this higher-risk population.

BackgroundKnowledge regarding the health-related quality of life (HRQoL) of children with celiac disease remains limited and inconclusive. We investigated the HRQoL of three groups of 12-year-olds with: i) undetected celiac disease ii) clinically diagnosed celiac disease, and iii) without celiac disease.MethodsA school-based cross-sectional multicenter screening study invited 18 325 children, whereof 68% consented to participate. Participants provided a blood sample, which was later analyzed for anti-tissue-tranglutaminase antibodies, and alongside filled in a questionnaire. When anti-tissue-tranglutaminase antibodies were elevated, a small intestinal biopsy verified the screening-detected celiac disease diagnosis. Self-reported HRQoL was measured using Kidscreen, a generic 52 items instrument with proven reliability and validity. Scores were linearly transformed into a 0–100 scale with higher values indicating better HRQoL. Mean values with standard deviations (mean ± SD) were compared, and uni- and multivariate logistic regression models tested the odds of a low HRQoL among children with undetected or diagnosed celiac disease, respectively.ResultsChildren with undetected celiac disease (n = 238) reported similar HRQoL as children without celiac disease (n = 12 037) (83.0 ± 11.0 vs. 82.5 ± 11.3, P = 0.51), and also similar HRQoL (82.2 ± 12.2, P = 0.28) to that of children with diagnosed celiac disease (n = 90), of whom 92% were adherent to treatment. Having undetected celiac disease did not increase the odds of low overall HRQoL, independent of sex, area of residence, study year and occurrence of gastrointestinal symptoms (adjusted odds ratio 0.77, 95% CI 0.54-1.10). Comparable results were seen for diagnosed celiac disease cases (adjusted odds ratio 1.11, 95% CI 0.67-1.85).ConclusionChildren with undetected celiac disease reported comparable HRQoL as their peers with diagnosed celiac disease, and those without celiac disease, when reporting prior to receiving the diagnosis through screening. Thus, children with celiac disease, both untreated and diagnosed, perceive their HRQoL as unimpaired by their disease.

BackgroundIllness perceptions and psychological distress are important in determining outcomes in rheumatic diseases.ObjectivesWe aimed to assess illness perceptions and psychological distress and their associations with Physical health-related quality of life...

Illness identity in young adults with refractory epilepsy

A Novel Patient-Derived Conceptual Model of the Impact of Celiac Disease in Adults: Implications for Patient-Reported Outcome and Health-Related Quality-of-Life Instrument Development.