Defining Pediatric Chronic Critical Illness: A Scoping Review.

OBJECTIVES: Children with chronic critical illness (CCI) are hypothesized to be a high-risk patient population with persistent multiple organ dysfunction and functional morbidities resulting in recurrent or prolonged critical care; however, it is unclear how CCI should be defined. The aim of this scoping review was to evaluate the existing literature for case definitions of pediatric CCI and case definitions of prolonged PICU admission and to explore the methodologies used to derive these definitions. DATA SOURCES: Four electronic databases (Ovid Medline, Embase, CINAHL, and Web of Science) from inception to March 3, 2021. STUDY SELECTION: We included studies that provided a specific case definition for CCI or prolonged PICU admission. Crowdsourcing was used to screen citations independently and in duplicate. A machine-learning algorithm was developed and validated using 6,284 citations assessed in duplicate by trained crowd reviewers. A hybrid of crowdsourcing and machine-learning methods was used to complete the remaining citation screening. DATA EXTRACTION: We extracted details of case definitions, study demographics, participant characteristics, and outcomes assessed. DATA SYNTHESIS: Sixty-seven studies were included. Twelve studies (18%) provided a definition for CCI that included concepts of PICU length of stay (n = 12), medical complexity or chronic conditions (n = 9), recurrent admissions (n = 9), technology dependence (n = 5), and uncertain prognosis (n = 1). Definitions were commonly referenced from another source (n = 6) or opinion-based (n = 5). The remaining 55 studies (82%) provided a definition for prolonged PICU admission, most frequently greater than or equal to 14 (n = 11) or greater than or equal to 28 days (n = 10). Most of these definitions were derived by investigator opinion (n = 24) or statistical method (n = 18). CONCLUSIONS: Pediatric CCI has been variably defined with regard to the concepts of patient complexity and chronicity of critical illness. A consensus definition is needed to advance this emerging and important area of pediatric critical care research.

Dismantling structural racism in nursing research.

Dismantling structural racism in nursing research is key to achieving health equity for populations that experience disproportionate burden of health disparities. Several nursing organizations have advocated for the nursing profession to address structural racism in the discipline and the Future of Nursing 2020 to 2030: Charting a Path to Achieve Health Equity specifically calls for research that addresses equity and social justice. Bold calls to conduct research to address structural racism notwithstanding, what remains less clear are the strategies needed. We propose key considerations for the design of research to address structural racism and offer examples from behavioral and biobehavioral research designed to dismantle structural racism.

Association of Acute Respiratory Failure in Early Childhood With Long-term Neurocognitive Outcomes.

Importance: Approximately 23 700 US children undergo invasive mechanical ventilation for acute respiratory failure annually, with unknown long-term effects on neurocognitive function. Objective: To evaluate neurocognitive outcomes of children who survive pediatric intensive care unit (PICU) hospitalization for acute respiratory failure compared with their biological siblings. Design, Setting, and Participants: Prospective sibling-matched cohort study conducted at 31 US PICUs and associated neuropsychology testing centers. Patients were 8 years or younger with a Pediatric Cerebral Performance Category score of 1 (normal) before PICU admission and less than or equal to 3 (no worse than moderate neurocognitive dysfunction) at PICU discharge, excluding patients with a history of neurocognitive deficits or who were readmitted and underwent mechanical ventilation. Biological siblings were aged 4 to 16 years at testing, with Pediatric Cerebral Performance Category score of 1 and no history of mechanical ventilation or general anesthesia. A total of 121 sibling pairs were enrolled from September 2, 2014, to December 13, 2017, and underwent neurocognitive testing starting March 14, 2015. The date of the final follow-up was November 6, 2018. Exposures: Critical illness and PICU treatment for acute respiratory failure. Main Outcomes and Measures: The primary outcome was IQ, estimated by the age-appropriate Vocabulary and Block Design subtests of the Wechsler Intelligence Scale. Secondary outcomes included measures of attention, processing speed, learning and memory, visuospatial skills, motor skills, language, and executive function. Evaluations occurred 3 to 8 years after hospital discharge. Results: Patients (n = 121; 55 [45%] female patients) underwent PICU care at a median (IQR) age of 1.0 (0.2-3.2) years, received a median (IQR) of 5.5 (3.1-7.7) days of invasive mechanical ventilation, and were tested at a median (IQR) age of 6.6 (5.4-9.1) years. Matched siblings (n = 121; 72 [60%] female siblings) were tested at a median (IQR) age of 8.4 (7.0-10.2) years. Patients had a lower mean estimated IQ than matched siblings (101.5 vs 104.3; mean difference, -2.8 [95% CI, -5.4 to -0.2]). Among secondary outcomes, patients had significantly lower scores than matched siblings on nonverbal memory (mean difference, -0.9 [95% CI, -1.6 to -0.3]), visuospatial skills (mean difference, -0.9 [95% CI, -1.8 to -0.1]), and fine motor control (mean difference, -3.1 [95% CI, -4.9 to -1.4]) and significantly higher scores on processing speed (mean difference, 4.4 [95% CI, 0.2-8.5]). There were no significant differences in the remaining secondary outcomes, including attention, verbal memory, expressive language, and executive function. Conclusions and Relevance: Among children, survival of PICU hospitalization for respiratory failure and discharge without severe cognitive dysfunction was associated with significantly lower subsequent IQ scores compared with matched siblings. However, the magnitude of the difference was small and of uncertain clinical importance.

Bias in Musculoskeletal Pain Management and Bias-Targeted Interventions to Improve Pain Outcomes: A Scoping Review.

Bias in healthcare negatively impacts disparities in care, treatment, and outcomes, especially among minority populations. A scoping review of the literature was performed to provide a deeper understanding of how bias influences musculoskeletal pain and potential effects of bias-targeted interventions on reducing pain disparities, as well as identify gaps and make suggestions for further research in this area. Publications from peer-reviewed journals were searched using the databases PubMed/MEDLINE, PsycINFO, CINAHL, and Scopus, with 18 studies identified. The literature review revealed that clinician-based bias and discrimination worsen pain and disability by reducing access to treatment and increasing patient pain-related injustice, catastrophizing, depression, and perceived stress. In contrast, clinician education and perspective-taking, patient decision tools, and community outreach interventions can help reduce bias and disparities in musculoskeletal pain outcomes. Increasing the diversity of the healthcare workforce should also be a priority. Models of care focused on health equity may provide an ideal framework to reduce bias and provide sustainable improvement in musculoskeletal pain management.

Association of Socioeconomic Status With Postdischarge Pediatric Resource Use and Quality of Life.

OBJECTIVES: Socioeconomic factors may impact healthcare resource use and health-related quality of life, but their association with postcritical illness outcomes is unknown. This study examines the associations between socioeconomic status, resource use, and health-related quality of life in a cohort of children recovering from acute respiratory failure. DESIGN: Secondary analysis of data from the Randomized Evaluation of Sedation Titration for Respiratory Failure clinical trial. SETTING: Thirty-one PICUs. PATIENTS: Children with acute respiratory failure enrolled whose parent/guardians consented for follow-up. MEASUREMENTS AND MAIN RESULTS: Resource use included in-home care, number of healthcare providers, prescribed medications, home medical equipment, emergency department visits, and hospital readmission. Socioeconomic status was estimated by matching residential address to census tract-based median income. Health-related quality of life was measured using age-based parent-report instruments. Resource use interviews with matched census tract data (n = 958) and health-related quality of life questionnaires (n = 750/958) were assessed. Compared with high-income children, low-income children received care from fewer types of healthcare providers (ß = -0.4; p = 0.004), used less newly prescribed medical equipment (odds ratio = 0.4; p < 0.001), and had more emergency department visits (43% vs 33%; p = 0.04). In the youngest cohort (< 2 yr old), low-income children had lower quality of life scores from physical ability (-8.6 points; p = 0.01) and bodily pain/discomfort (+8.2 points; p < 0.05). In addition, health-related quality of life was lower in those who had more healthcare providers and prescribed medications. In older children, health-related quality of life was lower if they had prescribed medications, emergency department visits, or hospital readmission. CONCLUSIONS: Children recovering from acute respiratory failure have ongoing healthcare resource use. Yet, lower income children use less in-home and outpatient services and use more hospital resources. Continued follow-up care, especially in lower income children, may help identify those in need of ongoing healthcare resources and those at-risk for decreased health-related quality of life.

Characterizing Long COVID: Deep Phenotype of a Complex Condition.

BACKGROUND: Numerous publications describe the clinical manifestations of post-acute sequelae of SARS-CoV-2 (PASC or "long COVID"), but they are difficult to integrate because of heterogeneous methods and the lack of a standard for denoting the many phenotypic manifestations. Patient-led studies are of particular importance for understanding the natural history of COVID-19, but integration is hampered because they often use different terms to describe the same symptom or condition. This significant disparity in patient versus clinical characterization motivated the proposed ontological approach to specifying manifestations, which will improve capture and integration of future long COVID studies. METHODS: The Human Phenotype Ontology (HPO) is a widely used standard for exchange and analysis of phenotypic abnormalities in human disease but has not yet been applied to the analysis of COVID-19. FUNDING: We identified 303 articles published before April 29, 2021, curated 59 relevant manuscripts that described clinical manifestations in 81 cohorts three weeks or more following acute COVID-19, and mapped 287 unique clinical findings to HPO terms. We present layperson synonyms and definitions that can be used to link patient self-report questionnaires to standard medical terminology. Long COVID clinical manifestations are not assessed consistently across studies, and most manifestations have been reported with a wide range of synonyms by different authors. Across at least 10 cohorts, authors reported 31 unique clinical features corresponding to HPO terms; the most commonly reported feature was Fatigue (median 45.1%) and the least commonly reported was Nausea (median 3.9%), but the reported percentages varied widely between studies. INTERPRETATION: Translating long COVID manifestations into computable HPO terms will improve analysis, data capture, and classification of long COVID patients. If researchers, clinicians, and patients share a common language, then studies can be compared/pooled more effectively. Furthermore, mapping lay terminology to HPO will help patients assist clinicians and researchers in creating phenotypic characterizations that are computationally accessible, thereby improving the stratification, diagnosis, and treatment of long COVID. FUNDING: U24TR002306; UL1TR001439; P30AG024832; GBMF4552; R01HG010067; UL1TR002535; K23HL128909; UL1TR002389; K99GM145411.

Income-driven socioeconomic status and presenting illness severity in children with acute respiratory failure.

Children living in low socioeconomic communities are vulnerable to poor health outcomes, especially when critically ill. The purpose of this study was to investigate the association between socioeconomic status (SES) and illness severity upon pediatric intensive care unit (PICU) admission in children with acute respiratory failure. This secondary analysis of the multicenter Randomized Evaluation of Sedation Titration for Respiratory Failure clinical trial includes children, 2 weeks to 17 years old, mechanically ventilated for acute respiratory failure; specifically, subjects who had parental consent for follow-up and residential addresses that could be matched with census tracts (n = 2006). Subjects were categorized into quartiles based on income, with a median income of $54,036 for the census tracts represented in the sample. Subjects in the highest income quartile were more likely to be older, non-Hispanic White, and hospitalized for pneumonia. Subjects in the lowest income quartile were more likely to be Black, younger, and hospitalized for asthma or bronchiolitis, to have age-appropriate baseline functional status, and history of prematurity and asthma. After controlling for age group, gender, race, and primary diagnosis, there were no associations between income quartile and either Pediatric Risk of Mortality scores or pediatric acute respiratory distress syndrome. As measured, income-based SES was not associated with illness severity upon PICU admission in this cohort of patients. More robust and reliable methods for measuring SES may help to better explain the mechanisms by which socioeconomic affect critical illness.

Study protocol for a two-center test of a nurse-implemented chronotherapeutic restoring bundle in critically ill children: RESTORE Resilience (R2).

Often, pediatric intensive care environments are not conducive to healing the sick. Critically ill children experience disruptions in their circadian rhythms, which can contribute to delayed recovery and poor outcomes. We aim to test the hypothesis that children managed via RESTORE Resilience (R2), a nurse-implemented chronotherapeutic bundle, will experience restorative circadian rhythms compared to children receiving usual care. In this two-phased, prospective cohort study, two separate pediatric intensive care units in the United Sates will enroll a total of 20 baseline subjects followed by 40 intervention subjects, 6 months to less than 18 years of age, requiring invasive mechanical ventilation. During the intervention phase, we will implement the R2 bundle, which includes: (1) a focused effort to replicate the child's pre-hospitalization daily routine, (2) cycled day-night lighting and sound modulation, (3) minimal yet effective sedation (RESTORE), (4) nighttime fasting with bolus enteral daytime feedings, (5) early progressive mobility (PICU Up!), (6) continuity in nursing care, and (7) parent diaries. Our primary outcome is circadian activity ratio post-extubation. We hypothesize that children receiving R2 will experience restored circadian rhythms as evidenced by decreased nighttime activity while in the PICU. Our exploratory outcomes include salivary melatonin levels; electroencephalogram (EEG) slow-wave activity; R2 feasibility, adherence, and system barriers; levels of patient comfort; exposure to sedative medications; time to physiological stability; and parent perception of being well cared for. This paper describes the design, rationale, and implementation of R2. CLINICALTRIALSGOV IDENTIFIER: NCT04695392.

Racial, ethnic, and socioeconomic disparities in paediatric critical care in the USA.

In an era of tremendous medical advancements, it is important to characterise and address inequities in the provision of health care and in outcomes. There is a large body of evidence describing such disparities by race or ethnicity and socioeconomic position in critically ill adults; however, this important issue has received less attention in children and adolescents (aged ≤21 years). This Review presents a summary of the available evidence on disparities in outcomes in paediatric critical illness in the USA as a result of racism and socioeconomic privilege. The majority of evidence of racial and socioeconomic disparities in paediatric critical care originates from the USA and is retrospective, with only one prospective intervention-based study. Although there is mixed evidence of disparities by race or ethnicity and socioeconomic position in general paediatric intensive care unit admissions and outcomes in the USA, there are striking trends within some disease processes. Notably, there is evidence of disparities in management and outcomes for out-of-hospital cardiac arrest, asthma, severe trauma, sepsis, and oncology, and in families' perceptions of care. Furthermore, there is clear evidence that critical care research is limited by under-enrolment of participants from minority race or ethnicity groups. We advocate for rigorous research standards and increases in the recruitment and enrolment of a diverse range of participants in paediatric critical care research to better understand the disparities observed, including the effects of racism and poverty. A clearer understanding of when, where, and how such disparities affect patients will better enable the development of effective strategies to inform practice, interventions, and policy.

A Role for Global DNA Methylation Level and IL2 Expression in the Transition From Acute to Chronic Low Back Pain.

Objectives: The transition from acute low back pain (aLBP) to chronic LBP (cLBP) results from a variety of factors, including epigenetic modifications of DNA. The aim of this study was to (1) compare global DNA (gDNA) methylation and histone acetylation at LBP onset between the aLBP and cLBP participants, (2) compare mRNA expression of genes with known roles in the transduction, maintenance, and/or modulation of pain between the aLBP and cLBP participants, (3) compare somatosensory function and pain ratings in our participants, and (4) determine if the aforementioned measurements were associated. Methods: A total of 220 participants were recruited for this prospective observational study following recent onset of an episode of LBP. We retained 45 individuals whose gDNA was of sufficient quality for analysis. The final sample included 14 participants whose pain resolved within 6 weeks of onset (aLBP),15 participants that reported pain for 6 months (cLBP), and 16 healthy controls. Participants were subjected to quantitative sensory testing (QST), blood was drawn via venipuncture, gDNA isolated, and global DNA methylation and histone acetylation, as well as mRNA expression of 84 candidate genes, were measured. Results: Individuals that develop cLBP display multimodal somatosensory hypersensitivity relative to aLBP participants. cLBP participants also had significantly lower global DNA methylation, which was negatively correlated with interleukin-2 (IL2) mRNA expression. Discussion: cLBP is characterized by somatosensory hypersensitivity, lower global DNA methylation, and higher IL2 expression level compared to those whose pain will resolve quickly (aLBP). These results suggest potential diagnostic and therapeutic relevance for global DNA methylation and IL2 expression in the pathology underlying the transition from acute to chronic LBP.

The Potential Role of Preoperative Pain, Catastrophizing, and Differential Gene Expression on Pain Outcomes after Pediatric Spinal Fusion.

BACKGROUND: Adolescent idiopathic scoliosis is one of the most common spinal deformities in children and adolescents requiring extensive surgical intervention. Due to the nature of surgery, spinal fusion increases their risk of experiencing persistent postsurgical pain. Up to 20% of adolescents report pain for months or years after corrective spinal fusion surgery. AIMS: To examine the influence of preoperative psychosocial factors and mRNA expression profiles on persistent postoperative pain in adolescents undergoing corrective spinal fusion surgery. DESIGN: Prospective, longitudinal cohort study. SETTING: Two freestanding academic children's hospitals. METHODS: Utilizing a longitudinal approach, adolescents were evaluated at baseline (preoperatively) and postoperatively at ±1 month and ±4-6 months. Self-report of pain scores, the Pain Catastrophizing Scale-Child, and whole blood for RNA sequencing analysis were obtained at each time point. RESULTS: Of the adolescents enrolled in the study, 36% experienced persistent pain at final postoperative follow-up. The most significant predictors of persistent pain included preoperative pain severity and helplessness. Gene expression analysis identified HLA-DRB3 as having increased expression in children who experienced persistent pain postoperatively, as opposed to those whose pain resolved. A prospective validation study with a larger sample size is needed to confirm these findings. CONCLUSIONS: While adolescent idiopathic scoliosis is not often classified as a painful condition, providers must be cognizant of pre-existing pain and anxiety that may precipitate a negative recovery trajectory. Policy and practice change are essential for early identification and subsequent intervention.

Contribution of COMT and BDNF Genotype and Expression to the Risk of Transition From Acute to Chronic Low Back Pain.

OBJECTIVES: A number of factors, including heritability and the environment, contribute to risk of transition from acute low back pain to chronic low back pain (CLBP). The aim of this study was to (1) compare somatosensory function and pain ratings at low back pain (LBP) onset between the acute low back pain and CLBP conditions and (2) evaluate associations between BDNF and COMT polymorphisms and expression levels at LBP onset to acute and chronic pain burden and risk for transition to the chronic pain state. METHODS: In this longitudinal study, 220 participants were enrolled following recent onset of LBP and data were collected until the LBP resolved or until the end of the study at 6 months. Forty-two participants' pain resolved before 6 weeks from onset and 42 participants continued to have pain at 6 months. Patient-reported pain burden, somatosensory function (quantitative sensory testing), and blood samples were collected at each study visit. RESULTS: CLBP is associated with greater pain burden and somatosensory hypersensitivity at the time of LBP onset. COMT rs4680 genotype (GG) was associated with acute cold pain sensitivity and with the risk for transition to CLBP while COMT expression was independently associated with risk for transition. DISCUSSION: CLBP was characterized by higher reported pain burden and augmented hypersensitivity at LBP onset. COMT expression and genotype were associated with acute pain burden and likelihood of transition to CLBP.

Effects of Physical Activity on Neurophysiological and Gene Expression Profiles in Chronic Back Pain: Study Protocol.

BACKGROUND: Despite the emphasis on exercise to reduce pain and improve function among people with chronic low back pain (cLBP), little is known about the underlying mechanism of the impact of exercise on the neurophysiological and gene transcription alterations that characterize cLBP. OBJECTIVES: To present a study protocol to examine the feasibility, acceptability, and initial efficacy of Problem-Solving Pain to Enhance Living Well (PROPEL) with the support of nurse consultations and wearable activity-tracking technology on self-management (SM) knowledge, skills, physical activity, and pain and to examine the differential neurophysiological and gene expression profiles in cLBP participants from pre- to post-PROPEL. METHODS: A pretest and posttest study is employed on 40 adults ages 18-60 years with cLBP who do not have serious complications and/or comorbidities that affect sensorimotor function. Participants will receive video modules focused on SM and biweekly phone consultations to facilitate symptom monitoring and problem-solving while increasing physical activity frequency and duration. Participants will be assessed for outcomes including SM skills, physical activity, and pain every 2 weeks for 12 weeks. We will examine the participants' differential neurophysiological and gene expression profiles at 12 weeks postintervention and correlate these outcomes with the total duration of physical activity. RESULTS: The study began in September 2018. Of the 99 subjects that were screened, 23 were enrolled and 8 completed data collection. DISCUSSION: Comparing the neurophysiological and gene expression profiles of people with cLBP exposed to PROPEL could inform the development of interventions that offer personalized physical activity dosage along with general SM support. Web-based programs such as PROPEL have the potential to enhance accessibility of evidence-based interventions that improve functionality and quality of life among people living with cLBP.

The Influence of Race, Ethnicity and Genetic Variants on Postoperative Pain Intensity: An Integrative Literature Review.

OBJECTIVES: Chronic postsurgical pain is pain that develops and persists for at least 3 months after a surgical procedure. The purpose of this review was to discover what evidence exists regarding the influence of race and ethnicity on postoperative pain intensity and what evidence exists regarding the influence of genetic polymorphisms on postoperative pain intensity. DESIGN: Integrative literature review. DATA SOURCES: CINAHL, PsychInfo, SCOPUS, and PubMed/Medline databases were searched for entries within the last 10 years. Sources included primary research investigating the relationship among race, ethnicity, and genetics in postoperative pain outcomes. REVIEW/ANALYSIS METHODS: Studies adhered to a strict inclusion and exclusion criteria. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were utilized to evaluate and assess manuscripts for inclusion. RESULTS: Twelve manuscripts were included for final review. There are significantly higher preoperative and postoperative pain intensity scores reported between African American and Hispanic individuals compared with non-Hispanic whites. Although some studies identified that non-Hispanic whites consumed more opioids and reported increased pain, there were no significant differences in opioid requirements in Hispanic and non-Hispanic individuals. COMT and OPRM1 were the most identified genetic polymorphisms associated with postoperative pain intensity. CONCLUSIONS: The literature varies with respect to race, ethnicity, and postoperative pain perception. Perioperative pain intensity has been suggested as a significant predictor of chronic postsurgical pain. COMT and OPRM1 may be associated with higher pain perception after surgical procedures.

Promoting self-management of breast and nipple pain in breastfeeding women: Protocol of a pilot randomized controlled trial.

The majority of women experience pain during breastfeeding initiation with few strategies to manage breast and nipple pain. In fact, women cite breast and nipple pain as among the most common reasons for breastfeeding cessation. To address this important issue, we developed a breastfeeding self-management (BSM) intervention, based on the Individual and Family Self-Management Theory Framework. In this framework, self-management is conceptualized as a process in which women use knowledge, beliefs, and social facilitation to achieve breastfeeding goals. The purpose of this longitudinal pilot randomized controlled trial was to test the feasibility, acceptability, and preliminary efficacy of the BSM intervention with women initiating breastfeeding. Recruitment of 60 women intending to breastfeed occurred within 48 hr of delivery and women were randomized to either the intervention or usual care group. The BSM intervention group received BSM education modules that included information of how to manage breast and nipple pain and self-management support through biweekly texting from the study nurse, and were asked to complete a daily breastfeeding journal. Primary outcomes measured at baseline, 1, 2, and 6 weeks will be used to (a) evaluate feasibility, acceptability, and preliminary efficacy of the BSM intervention, and (b) assess the influence of protective and risk factors of breastfeeding pain (including individual genetic polymorphisms related to pain sensitivity) on process variables for self-management of breastfeeding and breastfeeding pain, and on proximal (breastfeeding pain severity and interference, breastfeeding frequency) and distal outcomes (breastfeeding exclusivity and duration and general well-being).

Neonatal Pain: Perceptions and Current Practice.

Neonates may experience more than 300 painful procedures throughout their hospitalizations. Prior to 1980, there was a longstanding misconception that neonates do not experience pain. Current studies demonstrate that not only do neonates experience pain but also, due to their immature nervous systems, they are hypersensitive to painful stimuli. Poorly treated pain may lead to negative long-term consequences. Proper assessment of neonate pain is vital. The use of nonpharmacologic treatments may be beneficial in alleviating neonate pain. Pharmacologic treatments in the neonate have been well established. Pharmacologic and nonpharmacologic interventions can be used in conjunction to increase the efficacy of analgesia.

Pain self-management plus nurse-led support in young adults with irritable bowel syndrome: Study protocol for a pilot randomized control trial.

Irritable bowel syndrome (IBS) is a functional gut disorder that typically manifests in early adult years. IBS patients report that pain is the most distressing symptom with the greatest impact on quality of life. Pain-sensitivity genes and the gut microbiome may influence severity of symptoms as well as response to self-management (SM) interventions. Based on current understanding of the science of SM, pain neurophysiology, and the gut-brain axis, our team developed a pain SM intervention to be added to evidence-based self-management instruction to increase the individual's SM knowledge and skills (self-efficacy, self-regulation, and goal-setting). The purpose of this randomized controlled longitudinal pilot study is to examine the feasibility, acceptability, and preliminary effectiveness of the IBS-pain SM intervention on IBS-pain SM behaviors and related health outcomes. A sample of 80 young adults (age 18-29 years old) will be recruited and randomly assigned to the experimental or control group. Both groups will receive 10 electronic video modules focused on IBS-pain SM knowledge and skills. The experimental group also will receive nurse-led one-on-one phone consultations to facilitate monitoring and problem-solving. All participants will be followed over 12 weeks. Primary outcomes will be measured at baseline, 6 weeks, and 12 weeks, including IBS-pain SM behaviors, quality of life, and well-being. The influence of pain-sensitivity genes and the gut microbiome on IBS-pain SM behaviors and health outcomes also will be assessed.

Effects of Self-Management Interventions in Patients With Irritable Bowel Syndrome: Systematic Review.

Irritable bowel syndrome (IBS) is a prevalent and costly condition, with expenditures exceeding US$21 billion annually. As there is no known cure for IBS, treatment is focused on symptom self-management strategies. The purpose of this systematic review was to investigate the efficacy and overall effect of self-management interventions for patients with IBS. Of the 64 publications that were identified, 20 were included in the systematic review. Self-management interventions were found in diverse formats, including web-based, self-training booklets, individual and/or group interventions with health care providers, and cognitive-behavioral therapy or exercise-based interventions. Different symptom measures were used across the studies, whereas measurement of quality of life was more standardized. Overall, there is robust evidence supporting self-management interventions for improving short-term symptom management and improving quality of life, whereas longer term outcomes are variable. Further studies are needed to use standardized symptom measures and tailor interventions for pediatric populations, and tracking longer term outcomes.