Chronic Illness Groups Research Articles

Self-compassion and psychological distress in chronic illness: A meta-analysis.

Self-compassion is a positive psychological factor linked to improved physical and psychological outcomes across different chronic illness populations. However, the extent to which self-compassion contributes to reduced distress across different conditions or as a function of participant factors is not clear. The current meta-analysis aimed to quantify the association between self-compassion and psychological distress in different chronic illness populations and evaluate the factors that moderate this association. A systematic search of three electronic databases identified research reporting associations between self-compassion and psychological distress in chronic illness. A random effects meta-analysis was conducted to evaluate the association between self-compassion and psychological distress. Moderator analyses were conducted for sample characteristics and distress types. A bespoke tool evaluated study quality. Searches yielded 51 eligible studies with 57 effect sizes. Meta-analysis revealed that self-compassion was negatively associated with psychological distress (r = -.516; 95% CIs [-.55, -.48]; p = .000). Moderator analyses were significant for distress type and chronic illness group, with effects being largest for stress and neurological conditions. Effects did not vary by sex, age or illness duration. Findings from this first comprehensive investigation of the link between self-compassion and distress in chronic illness highlight the protective role of self-compassion for chronic illness populations. These results lay the foundation for further research into understanding the processes that link self-compassion to lower psychological distress, and that examine the effectiveness of self-compassion interventions in chronic illness populations, to further advance knowledge and inform practice in this area.

Developing and validating a brief screening scale for ME/CFS

ABSTRACT Objective The purpose of the current study was to develop and evaluate a brief screening instrument for ME/CFS. The current study identified 4 symptom items that identify those positive for the IOM ME/CFS case definition. Study Design A data set of over 2,000 patients with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and over 350 controls were assessed for the 4-item DePaul Symptom Questionnaire-Brief (DSQ-Brief). All respondents also completed the longer 54-item DePaul Symptom Questionnaire (DSQ-1) as well as the 14-item DePaul Symptom Questionnaire-Short Form (DSQ-SF). These data sets were collected from multiple countries. We also examined the DSQ-Brief, DSQ-1, and DSQ-SF with other chronic illness groups [Multiple Sclerosis (MS) and Post-Polio Syndrome (PPS)] and those with Long COVID. Random Forest comparisons were employed in these analyses. Results When contrasting ME/CFS from controls, high levels of accuracy occurred using the DSQ-1, DSQ-SF, and DSQ-Brief. High accuracy again occurred for differentiating those with ME/CFS from MS, PPS, and Long COVID using the DSQ-1 and DSQ-SF, but accuracy was less for the DSQ-Brief. Conclusions The DSQ-Brief had high sensitivity, meaning it could identify those with ME/CFS versus controls, whereas accuracy dropped with other chronic illnesses. However, it was possible to achieve better accuracy and identify those cases where misidentification occurred by administering the DSQ-SF or DSQ-1 following the DSQ-Brief. It is now possible to screen individuals for ME/CFS using the DSQ-Brief and in so doing, identify those who are most likely to have ME/CFS.

Demographic and condition-specific factors influencing how symptoms are experienced over time: results of the MOMENT study

Abstract Funding Acknowledgements Type of funding sources: Private grant(s) and/or Sponsorship. Main funding source(s): Australian Catholic University Background Adults with chronic illness (e.g., heart disease, diabetes) commonly experience intractable symptoms. The response to symptoms is often delayed until hospitalization is required. Acute symptoms prompt treatment-seeking, but variability in severity and bothersomeness of chronic symptoms may contribute to a delay in response. Purpose The purpose of this study was to describe symptom severity, bothersomeness, and variability over time and how explore these differ by demographic and clinical groups. Methods We conducted a longitudinal observational study, consenting and enrolling a convenience sample of adults ≥ 18 years with one or more symptomatic chronic conditions living in Italy, the Netherlands, Sweden, or the United States. Recruitment was done through social media. Inclusion criteria were ≥ 3 months experience with heart failure (HF), diabetes mellitus (DM), arthritis, asthma, and/or chronic obstructive pulmonary disease (COPD) and experiencing symptom(s) ≥ 3 times weekly. Symptoms characteristics were assessed twice daily on smartphones using ecological daily assessment methods to minimize recall bias. Data were analyzed using descriptive statistics, and Cohen’s d as an effect size when not significant. Results Eighty people completed the study. Most participants were middle-aged, female, and well-educated. Most lived in the EU. Variability in symptom severity and bothersomeness over time were strongly associated (r = 0.62, p<0.001) but this variability was not associated with either average symptom severity or bothersomeness (all p>0.05). There was a significant association between age and variability in symptom bothersomeness, with less variability and more stability in symptom bothersomeness over time as age increased (r = -0.29, p = 0.011). Women had lower average symptom severity and average bothersomeness than men (d = 0.33), but the differences were not significant. Comparing respondents with and without various conditions, in HF, there was a slight but non-significant difference in variability in symptom bothersomeness over time (d = 0.55). In DM, average symptom severity over time was less in persons with DM (t=-2.0, p = 0.024). Average symptom bothersomeness over time was less in DM (t=2.2, p = 0.007). In asthma, variability in symptom severity was greater over time (t=2.3, p = 0.012). In COPD, average symptom bothersomeness over time was greater (t=3.2, p = 0.001), variability in symptom bothersomeness over time was less (t=-1.9, p = 0.034), and the average symptom severity over time was greater (t=3.7, p<0.001). In arthritis, bothersomeness was higher and there was a slight but non-significant difference in average bothersomeness over time (d = -0.44). Conclusion There are both demographic (age, gender) and condition-specific factors that influence how symptoms are experienced over time in adults with chronic illness. Understanding of these patterns can be useful in designing interventions for chronic illness groups.

Could there be an interplay between periodontal changes and pancreatic malignancies?

The term "periodontal disease" refers to a group of chronic inflammatory illnesses caused by specific microorganisms from subgingival biofilm, that affect the tooth-supporting tissues. Recent research has also shown that periodontal infection plays a role in aggravating systemic disease states at distal sites, reinforcing the significance of the oral cavity for general health. Additionally, it has been suggested that gastroenterological malignancies may be promoted by hematogenous, enteral or lymphatic translocation of periopathogens. In the past 25 years, the global burden of pancreatic cancer (PC) has more than doubled, making it one of the major causes of cancer-related mortality. Periodontitis has been linked to at least 50% increased risk of PC and it could be considered a risk factor for this malignancy. A recent study performed on 59000 African American women with a follow up of 21 years showed that participants who had poor dental health had higher chances of PC. The findings, according to researchers, might be related to the inflammation that some oral bacteria trigger. Regarding the mortality of PC, periodontitis considerably raises the chance of dying from PC. Microbiome alterations in the gut, oral cavity and pancreatic tissues of PC patients occur when compared to healthy flora, demonstrating a link between PC and microecology. Inflammation may also contribute to PC development, although the underlying pathway is not yet known. The function of the microbiome in PC risk has drawn more focus over the last decade. Future risk of PC has been linked to the oral microbiome, specifically increased levels of Porphyromonas gingivalis and Aggregatibacter actinomycetemcomitans and decreased relative abundance of Leptotrichia and Fusobacteria, suggesting that it may have an impact on the inflammatory condition by expanding, altering, and regulating the commensal microbiome. Patients who received periodontal treatment had significantly decreased incidence rate ratios for PC. By analyzing patterns in the microbiome composition throughout PC development and establishing strategies to enhance the cancer-associated microbial system, we can increase the efficacy of therapy and eventually find an application for the microbial system. The development of immunogenomics and gut micro-genomics in the life sciences will result in a significant advancement in our understanding of how microbial systems and immunotherapy interact, and it may also have intriguing therapeutic implications for extending the lifetime of PC patients.

Quality of life and psychosocial outcomes of adults who were pediatric solid organ transplant recipients: A systematic review.

The number of pediatric SOT recipients surviving into adulthood is increasing. Thus, understanding their psychosocial and QoL outcomes is important. We conducted a systematic review to collate existing literature examining QoL outcomes (physical functioning, psychological functioning, social functioning), as well as risk and protective factors associated with QoL, among adults who underwent SOT during childhood. A systematic search of five databases, from inception to January 6, 2021, was conducted to identify articles that reported on QoL outcomes for adults (≥18-year of age) who received a SOT during childhood (<19-year of age). Twenty-five articles met inclusion criteria. Studies examined QoL across a range of SOT populations (liver, kidney, heart). QoL and psychosocial outcomes were variable; however, the majority of studies indicated QoL in this population to be similar to the general population, or at least similar to other chronic illness groups, with the exception of physical and social functioning. Factors related to a more optimal medical course, younger age at transplant and follow-up, and positive psychosocial functioning, were found to be predictive of better QoL outcomes. While several studies indicated QoL to be similar to the general population, the literature is limited in both quantity and quality. No study employed prospective, longitudinal methodologies to systematically evaluate QoL over time and few studies utilized normative-based measures of QoL. Furthermore, several SOT groups were under-represented in the literature (e.g., lung, intestine, multi-visceral). Nonetheless, findings have implications for intervention and clinical decision-making.

Epidemiology and Burden of Disorders of Gut-Brain Interaction in Romania: A Subgroup Analysis of the Rome Foundation Global Epidemiology Study

Disorders of gut-brain interaction (DGBI) are a group of chronic illnesses that are crucial to public health because they are widespread, influence patients' quality of life and functional level, and exert a major socioeconomic impact. We assessed the national prevalence of all 22 DGBI, the percentage of respondents satisfying diagnostic criteria for at least one DGBI, and the impact on the disease burden in Romania using data from the Rome Foundation Global Epidemiology Study. Data were collected through an anonymous, nationwide, and secure online survey, which evaluated the prevalence of any DGBI as well as over 22 different DGBI. The Rome IV diagnostic questionnaire and an in-depth supplemental questionnaire were included in the survey, which was completed through the Internet with numerous built-in quality-assurance measures. The survey was completed by 2,049 participants (mean age 42.29±13.11 years) with a representative national distribution. Diagnostic criteria for any DGBI were met in 40.1% of the subjects, while 28.6% met criteria for only one DGBI (no overlap), and 11.5% met criteria for DGBIs in two, three, or four overlapping gastrointestinal anatomical regions. Females had a substantially higher predominance of DGBI than males. Psychosocial characteristics (such as quality of life, somatization, and concern about digestive problems) and healthcare utilization (such as physician visits and medication use) were associated with having any DGBI. We provide the first comprehensive evaluation of the prevalence and burden of DGBI in Romania using the Rome IV criteria. The burden of DGBI in Romania is substantial, with 40.1% of the 2,049 participants meeting diagnostic criteria for any DGBI. These findings demonstrate the importance of patient care, and the need for training and future research.

Bring Your Whole Self to Work: Conversations with Affinity Group Leaders

The objective of this panel is to open a dialog between the general HFES membership and the HFES Coallition of Affinity Groups (COAG). COAG members will describe the foundation, actions and goals of HFES Affinity Groups and answer questions from attendees. The panel will start by Dr. Ashley Hughes and Sylvain Bruni briefly giving an overview and the purpose for this discussion panel. The panelists will then provide their views and experiences regarding this topic. Gwen Malone will discuss how she leads and envisions the future of the Black, Indigenous, and People of Color (BIPOC) group. Dr. Rose Figueroa will share about the formation of the newest Affinity Group, Disability and Chronic Illness (DCI) group. Dr. Jules Trippe and Hanna Barton will discuss their approach in building the LGBTQ+ community and group and Christy Harper will discuss leadership within the HF/E’s Women’s Organization for Mentoring And Networking (WOMAN). The specific theme of this discussion panel is focused on how we can engage members while promoting intersectional inclusivity. Discussion time: 90 minutes.

Unexplained post-acute infection syndromes.

SARS-CoV-2 is not unique in its ability to cause post-acute sequelae; certain acute infections have long been associated with an unexplained chronic disability in a minority of patients. These post-acute infection syndromes (PAISs) represent a substantial healthcare burden, but there is a lack of understanding of the underlying mechanisms, representing a significant blind spot in the field of medicine. The relatively similar symptom profiles of individual PAISs, irrespective of the infectious agent, as well as the overlap of clinical features with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), suggest the potential involvement of a common etiopathogenesis. In this Review, we summarize what is known about unexplained PAISs, provide context for post-acute sequelae of SARS-CoV-2 infection (PASC), and delineate the need for basic biomedical research into the underlying mechanisms behind this group of enigmatic chronic illnesses.

The impact of the COVID‐19 pandemic on pediatric chronic illness groups

The COVID‐19 pandemic has had profound impacts on children and families, with widescale disruptions in many aspects of individual, family, school, and peer functioning. For children and adolescents, the pandemic has contributed to increased prevalence of depression, anxiety, eating disorders, and suicidality, particularly among adolescents.

Prevalence of depressive and anxiety symptoms among Chinese older adults during the COVID-19 pandemic: A systematic review and meta-analysis.

Background: Estimating the prevalence of depressive and anxiety symptoms among older adults with different health conditions can inform mental health services for this population during the corona virus disease-2019 (COVID-19) pandemic. Method: A search of 12 scientific databases identified 17 studies with 11,237 Chinese older adults who were infected by COVID-19, were generally healthy, or had chronic illnesses. Meta-analysis was used to estimate the overall prevalence of depressive and anxiety symptoms in these three groups. Assessment criteria, region, and time phase of the pandemic were tested as sources of heterogeneity. Results: With an average risk of bias score of 6.71 (range = 6–8), the majority of included studies employed appropriate statistical methods, used validated measurement tools, and had adequate response rates; however, they might have deficiencies in sample frame, sampling method, and sample size. Within the COVID-19, general, and chronic illness groups, the prevalence of depressive symptoms was 27%, 26%, and 61%, respectively, and the prevalence of anxiety symptoms was 14%, 23%, and 85%, respectively. Among generally healthy older adults, anxiety was more prevalent during the Phase 2 (March–April 2020) of the pandemic compared with other time phases. Conclusions: The results have implications for addressing the mental health problems of Chinese older adults, especially those with chronic illnesses, during the COVID-19 pandemic.

Patient characteristics and utilization of an online patient portal in a rural academic general internal medicine practice

BackgroundOnline patient portals have the potential to improve patient engagement and health care outcomes. This is especially true among rural patient populations that may live far from their health care providers and for whom transportation is a barrier to accessing care. This study compared the characteristics of active users of an online patient portal to non-users and assessed utilization among users in a rural academic primary care clinic to identify disparities in adoption and use.MethodsWe conducted a cross sectional study of 28,028 patients in a general internal medicine clinic between June 2019 and May 2020 to assess (a) characteristics of patients who had an online patient portal account and used the patient portal compared to those who did not register for an account, and (b) the frequency of use of the patient portal (number of logons and number of messages sent and received) by patients over the study period. We compared results based on demographic characteristics, focusing on gender, age, race, presence or absence of nine chronic illnesses, smoking status, and BMI.ResultsIn the study cohort of 28,028 patients, 82% were active users of the patient portal. Females, patients aged 41–65, and non-smokers were more likely to use the portal than their counterparts. In total, patients with eight out of nine chronic illness groups studied (heart failure, cerebrovascular disease, history of a myocardial infarction, peripheral vascular disease, and renal disease) were less likely to use the patient portal than patients without these chronic conditions. On average, patients log onto the patient portal 25 times per year and send and receive 6 messages to and from the clinic. We found that females, patients older than 65, former smokers and obese patients logged on and sent and received more messages compared to the overall cohort. Although the sample size was small, on average Black patients logged onto the patient portal 19 times and sent and received 3.6 messages compared to White patients who logged on 25 times with 5.8 messages on average over the yearlong study period.ConclusionsIn a rural academic internal medicine clinic, female patients, aged 41–65, non-smokers, and those without certain chronic conditions were more likely to use an online patient portal. Recognizing and addressing barriers to patient portal use is essential for robust and sustained patient portal uptake and ensuring that the benefits of portal use are equally distributed among all patients.

Spanish version of Jenkins Sleep Scale in physicians and nurses: psychometric properties from a Peruvian nationally representative sample

ObjectiveTo evaluate the psychometric properties of the Spanish version of Jenkins Sleep Scale with 4 items (JSS-4) of the Peruvian health system's (PHS) nurses and physicians. MethodsWe carried out a psychometric study based on secondary analysis in a sample from a nationally representative survey that used acomplex sampling design. The participants were physicians and nurses aged 18–65 years, working in PHS private and public facilities, who have fulfilled all JSS-4 items. We performed a confirmatory factor analysis. Reliability was evaluated via two estimates - classic alpha (α) and categorical omega (ω) coefficients. Also, we tested the invariance across groups of variables. The convergent validity was evaluated based on the relation between JSS-4 and PHQ-2 using Pearson's correlation coefficient and effect size (Cohen's d). Also, we designed normative values based on percentiles. ResultsWe included 2100 physicians and 2826 nurses in the analysis. We observed that the unidimensional model has adequate goodness-of-fit indices and values of α and ω coefficients.No measurement invariance was found between the groups of professionals and age groups; however, invariance was achieved between sex, monthly income, work-related illness, and chronic illness groups. Regarding the relation with other variables, the JSS-4 has a small correlation with PHQ-2. Also, profession and age-specific normative values were proposed. ConclusionJSS-4 Spanish version has adequate psychometric properties in PHS nurses and physicians.

Coping, social support, and anxiety in people with mast cell disorders

BackgroundMast cell disorders (MCDs) are rare, chronic, debilitating diseases with a varied and complex clinical trajectory that creates challenges to physical and mental health. Reliable estimates of the prevalence of anxiety in this population are largely nonexistent. Furthermore, very little is known on how sufferers’ coping efforts affect their emotions and adjustment. Because a person with an MCD cannot eliminate the stressors associated with their chronic illness, it is important to understand what helps them adjust. ObjectiveTo document the magnitude of anxiety in those with MCD, their physical symptoms, levels of social support, and ways of coping with the stress of the disease and to evaluate the extent to which symptoms, social support, and coping are associated with anxiety. MethodsIndividuals with MCDs completed an anonymous Internet-based survey (N = 157). ResultsMore than half of individuals with MCDs in this study found their illness to be very stressful, and nearly a third were experiencing moderate levels of anxiety. Participants who had more frequent and severe physical symptoms reported higher levels of anxiety. Those who reported coping with their problems by using planning strategies and those who felt they had more social support available to them were less anxious; those who used more avoidant strategies to cope were more anxious. ConclusionBased on the current results, and intervention work in other chronic illness groups, it seems likely that coping behaviors are a fruitful target of intervention for patients with MCD to reduce their emotional distress.

Stigma is associated with illness self-concept in individuals with concealable chronic illnesses.

Previous research suggests that chronic illnesses can elicit stigma, even when those illnesses are concealable. Such stigmatization is assumed to lead to a stigmatized identity. Additionally, chronic illness affects one's self-concept, as one reconstructs a sense of self with illness incorporated. However, no research has examined the interplay between stigma and self-concept in those with concealable chronic illnesses. Therefore, we investigated the extent to which experienced, anticipated, and internalized stigma are associated with illness self-concept in individuals living with concealable chronic illnesses. Furthermore, we explored if the aforementioned aspects of stigma are associated with enrichment in the self-concept in the same cohort. An online correlational survey of people with concealable chronic illness (N = 446). Participants completed self-report measures of chronic illness-specific measures of stigma and illness self-concept, both negative and positive. Results indicated that there is a positive relationship between experienced, anticipated, and internalized stigma and illness self-concept, indicating that stigma is associated with increased preoccupation and perceived impact of one's illness on the self. Although there is also a negative relationship between anticipated and internalized stigma and enrichment, only internalized stigma is associated with enrichment over and above the effects of control variables such as personal control. Our findings bridge the existing literature on illness self-concept and stigma for chronic illness groups, with a specific focus on those with concealable chronic illnesses. More varied approaches to coping with illness should be encouraged, including encouraging enrichment aspects to potentially act as a buffer between the effects of stigma and illness self-concept.

COVID-19 symptoms over time: comparing long-haulers to ME/CFS

ABSTRACT Introduction Our objective was to determine which symptoms among long-hauler COVID-19 patients change over time, and how their symptoms compare to another chronic illness group. Methods 278 long-haulers completed two symptom questionnaires at one time point, with one recounting experiences during the first two weeks of their illness, an average of 21.7 weeks prior. We used a comparison group of 502 patients diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Participants completed a standardized symptom questionnaire and a list of additional CDC COVID-19 symptoms. Results Over time, the long-haulers reported an overall reduction of most symptoms including unrefreshing sleep and post-exertional malaise, but an intensification of neurocognitive symptoms. When compared to ME/CFS, the COVID-19 sample was initially more symptomatic for the immune and orthostatic domains but over time, the long-haulers evidenced significantly less severe symptoms than those with ME/CFS, except in the orthostatic domain. Among the COVID-19 long haulers, several neurocognitive symptoms got worse over time, whereas improvements occurred in most other areas. Conclusions These types of differential patterns of symptoms over time might contribute to helping better understand the pathophysiology of those reporting prolonged illness following COVID-19.

Diabetes telemedicine clinic implementation during the COVID-19 virus outbreak in Saudi Arabia

Background: Saudi Arabia implemented a nationwide lockdown to slow the spread of the COVID-19 after a global pandemic has been declared by the World Health Organization. Diabetes patients are one of the most vulnerable chronic illness groups to the complications of COVID-19 virus, thus the necessary to implement a tele-medicine clinic during the lockdown. Methods: A cross-sectional observational study, the study was done during the period from October to December 2020. We used convenience sampling to select participants who attended the clinics of the Diabetes Care Center at King Salman Hospital, Riyadh, Saudi Arabia. A total of 375 patients participated in the study. Results: The study included 375 participants around 60% were female participants. The age of almost one-third of them (33.9%) ranged between 51 and 60 years. Most of the participants were type 2 diabetic patients (85.3%), and lived in Riyadh city (97.6%). Vast majority of participants (99.5%) were follow-up patients and reported telemedicine visit by physicians (98.9%). Patients’ satisfaction questions showed that majority of the participants either strongly agreed or agreed with the statements that they were satisfied with the quality of the audio during the virtual visit (92%), use of telemedicine was essential in maintaining health during the COVID-19 outbreak (90.1%), the quality of the medical care provided during the virtual visit (88.3%), the clarity of the management plan discussed with the heath care practitioner during the virtual visit (87.7%), the tele-medicine visit was as good as a regular in person visit (81.5%). Also, majority of the participants recommend making diabetes tele-medicine clinic as an available option for patients with diabetes after the COVID-19 outbreak is over (81.5%). Conclusion: The COVID-19 pandemic has urged the transition from in person clinical visits to tele-medicine clinics and showed that it is feasible and effective to have the option of tele-medicine for diabetes clinics in Saudi Arabia. The majority of diabetic patients reported high levels of satisfaction with the tele-medicine clinic.

Medical Decision Making among Adolescents and Young Adults with Heart Failure

Purpose In pediatric chronic illness groups, adolescent and young adult (AYA) medical decision making (DM) involvement is associated with important physical and psychosocial outcomes. Despite high morbidity, mortality, and treatment burden in AYAs with heart failure, their DM preferences and level of involvement are largely unknown. This study aimed to: 1) describe AYA DM preferences, 2) determine the degree of AYA DM involvement related to heart disease management, and 3) examine patient and disease characteristics associated with DM involvement. Methods AYAs (12-24 years) with heart failure or a significant post-heart transplant complication and a parent were enrolled at a single center. AYA/parent dyads completed a validated DM preferences item and Decision Making Involvement Scale. Standard descriptive statistics were reported and univariate comparisons were conducted. Results 46 patients and 44 parents participated. Patients were 63% male; 76% White. Dilated cardiomyopathy (28%), chemotherapy-related cardiomyopathy (24%), and single ventricle heart disease (17%) were the most common diagnoses. Disease burden was high with 59% having ≥6 hospitalizations, 50% having ≥3 cardiac surgeries, and 39% having extra-cardiac disease. Nearly half (48%) of AYAs reported a preference for active, patient-led DM; 24% desired shared DM with parent/medical team. Conversely, 36% of parents felt that they and the medical team should make decisions together without child involvement with a smaller group preferring shared DM with their child (25%) or patient-led DM (11%). AYA-parent dyads were highly discordant in DM preferences (P=0.004). Parents perceived seeking their child's opinion more than AYA report of such behavior (P=0.01). Greater time since diagnosis (P=0.01) and higher NYHA class (P=0.02) were associated with AYA preference for more active, patient-led DM. Older AYA age (P=0.04), congenital heart disease diagnosis (P=0.03), and transplant history (P=0.04) were associated with greater involvement in a recent heart disease management decision. Conclusion Most AYAs with heart failure desire involvement in their medical DM, often to a degree greater than what their parent(s) perceives. Interventions to enhance AYA engagement in their own medical DM are needed, along with future study of the associations of AYA DM involvement with physical and psychosocial outcomes.

Prevalence and Impact of Post-traumatic Stress Disorder in Gastrointestinal Conditions: A Systematic Review.

Psychological distress is often observed in patients with gastrointestinal illness. To date, there has been limited research conducted to assess the prevalence and impact of post-traumatic stress disorder (PTSD) in gastrointestinal cohorts.The aim of this systematic review is to review the evidence for the prevalence of PTSD in gastrointestinal cohorts versus comparator groups (healthy controls and chronic illness groups), predictive factors associated with the development and management of PTSD and the impact on patient outcomes. Adult studies were identified through systematic searches of eight databases (MEDLINE, Embase, Emcare, PsycINFO, Ovid Nursing, CINAHL, Informit Health Collection, and Cochrane Library) in February 2020. The overall pooled prevalence rate of PTSD in GI cohorts was 36%; however, the prevalence rate in non-veteran-specific gastrointestinal cohorts of 18% across all GI classification groups is likely to be the more representative rate. The non-gastrointestinal chronic illness cohort PTSD prevalence rate was 11%. Predictors identified in the development of post-traumatic stress in gastrointestinal cohorts include: female gender, poor social support, life adversity, subjective pain, and dietary choices. Post-traumatic stress was found to exacerbate gastrointestinal symptoms in a Crohn's Disease sample, whereby disease exacerbation was four times in those who met the criteria for probable PTSD. Post-traumatic stress symptoms affect around one in five individuals (non-veteran status) with a gastrointestinal condition. Further research is needed to understand the psychological and biological mechanisms by which PTSD increases the risk of developing and exacerbating gastrointestinal symptoms.

Comparison of factors associated with successful transition of care in patients with HIV versus other chronic diseases

Transfer of pediatric patients to adult care is an integral part of optimizing care of chronically ill patients and requires advanced infrastructure and availability of a multidisciplinary team. Thus, assessing factors associated with transition to adult care in this and the other chronic disease group will aid in the targeting intervention programs. The aim of the study was to compare factors associated with transitional readiness and health risk behaviors between adolescents with HIV infection and other chronic diseases. Participants ages 14 to 18 were recruited from chronic care clinics at Siriraj hospital between 2015 and 2016. Self-assessment questionnaires composed of health risk behaviors and a 25-item Likert Scale transition readiness questionnaire with possible scores ranging from 25 to 100 were administered. Analysis was done by SPSS 18. There were 165 adolescents who participated in the study. Median age was 16 years (range, 14-18). The overall transitional readiness average score was 54.15 ± 8.4 which showed no difference between HIV group (HIVG) and other chronic illness group (non-HIVG). The subjects in the HIVG scored significantly higher in self-management skills (13.03 ± 2.1 vs.12.09 ± 2.8, p < 0.05) than their non-HIV counterparts. However, they scored lower in their perception of transition readiness than non-HIVG (13.6 ±2.1 vs. 14.85 ± 2.5, p < 0.05). Adolescents who were not HIV-infected were more likely to not want to attend school because of their illness (OR = 4.33, 95% CI = 0.97-19.24.) Conversely, HIV-infected adolescents were more likely to used social media (OR=10.2, 95% CI = 3.26-31.98), consume alcohol beverage (OR = 2.83, 95% CI =1.23-6.49), smoked cigarettes (OR = 4.17, 95% CI =1.31-13.26), and lack STD knowledge (OR = 3.63, 95% CI = 1.49-8.81) rather than non-HIV infected adolescents. HIV-infected adolescents perceived their self-management skills to be higher than adolescent with other chronic diseases. However, HIV-infected adolescents still possess increased health risk behaviors. To effectively formulate transitional care practice in the Thai context, the program should be focused on health risk behaviors.

Health-related quality of life in Egyptian children with nephrotic syndrome.

This research aimed to evaluate Quality of life (QoL) in Egyptian children with idiopathic Nephrotic syndrome (INS) in comparison to healthy children and children with chronic non-renal illnesses. In this questionnaire-based study, 300 children were included, 100 with INS and 2 matched control groups: healthy group, and chronic non-renal illness group. QoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™ 4.0 Generic Core Scales) and the Generic Children's QoL Measure (GCQ). All mean scores of PedsQL domains in INS group were significantly higher than chronic non-renal illness group and significantly lower than the healthy control group (p = < 0.001) for all and similar results reported also regarding GCQ scores in INS compared to diseased (p = 0.02) and healthy controls (p = 0.006). Steroid-resistant NS group had lowest scores in all domains (p = < 0.001) compared to other clinical phenotypes of NS group. The long duration of illness, higher number of relapses, high cumulative steroid dose, and high number of medications used were associated with lower PedsQL and GCQ scores (p < 0.001 for all) CONCLUSION: This is the first study to asses QoL in Egyptian children with INS and correlates QoL scores to clinical phenotypes and complications of the disease. Egyptian children with INS need strenuous efforts from pediatricians and psychiatrists to improve QoL. Both PedsQL™ 4.0 scale and GCQ are simple, convenient, and can be used in daily clinical practice to asses QoL in children with NS.