Mariella Lane

Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application

Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. HRQOL measures are also increasingly proposed for use in clinical practice settings to inform treatment decisions. In settings where HRQOL measures have been utilized with adults, physicians report such measures as useful, some physicians alter their treatment based on patient reports on such instruments, and patients themselves generally feel the instruments to be helpful. However, there is a dearth of studies evaluating the clinical utility of HRQOL measurement in pediatric clinical practice. This paper provides an updated review of the literature and proposes a precept governing the application of pediatric HRQOL measurement in pediatric clinical practice. Utilizing HRQOL measurement in pediatric healthcare settings can facilitate patient-physician communication, improve patient/parent satisfaction, identify hidden morbidities, and assist in clinical decision-making. Demonstrating the utility of pediatric HRQOL measurement in identifying children with the greatest needs, while simultaneously demonstrating the cost advantages of providing timely, targeted interventions to address those needs, may ultimately provide the driving force for incorporating HRQOL measurement in pediatric clinical practice.

Health-related quality of life in pediatric patients with irritable bowel syndrome : A comparative analysis

The primary aim of the study was to investigate the generic health-related quality of life (HRQOL) of pediatric patients meeting Rome II criteria for irritable bowel syndrome (IBS) in comparison to healthy children. The secondary aim was to compare pediatric patients with IBS to pediatric patients with Rome II criteria diagnosed functional abdominal pain (FAP) and patients with diagnosed organic gastrointestinal (GI) disorders. The study also investigated the associations between GI symptoms with generic HRQOL and evaluated group differences in school days missed and days sick in bed and needing care. HRQOL was measured with the PedsQL™ 4.0 Generic Core Scales (Physical, Emotional, Social, and School Functioning). The PedsQL™ was administered in outpatient pediatric gastroenterology clinics in California, Texas, and New Jersey. A total of 287 families (280 child self-report, 286 parent proxy-report) with children diagnosed with IBS (n = 123), FAP (n = 82), or organic GI disorders (n = 82) participated. Pediatric patients with IBS demonstrated significantly lower Physical, Emotional, Social, and School Functioning in comparison to healthy children, and comparable HRQOL to patients with FAP and organic GI diagnoses. GI symptoms were significantly associated with generic HRQOL. Patients with IBS demonstrated a significantly greater number of days missed from school, days sick in bed/too ill to play, and days needing someone to care for them than healthy children, but significantly fewer days than patients with FAP and organic GI disorders. Pediatric patients with IBS demonstrated impaired HRQOL in dimensions measuring Physical, Emotional, Social, and School Functioning. These findings suggest the need for targeted interventions to address these dimensions of impaired HRQOL.

Creation and Initial Evaluation of a Stool Form Scale for Children

OBJECTIVE To develop a pediatric stool form rating scale and determine its interrater reliability, intrarater reliability, and agreement among pediatric gastroenterologists. STUDY DESIGN An ordinal stool scale with 5 categorical stool form types was created on the basis of the Bristol Stool Form Scale, and 32 color 2-dimensional stool photographs were shown to 14 pediatric gastroenterologists. Each gastroenterologist rated the stool form depicted in each photograph with the modified stool scale. Ten gastroenterologists agreed to rerate the stool form depicted in each photograph a minimum of 6 months after the first rating. RESULTS A total of 448 ratings were completed; 430 (94%) of all ratings were within at least 1 category type of the most common (modal) rating for each photograph. Eight (25%) stool photographs had complete agreement among all raters. Interrater and intrarater reliability was high with a single measure intraclass correlation of 0.85 (95% confidence interval: 0.78-0.91; P<.001) and 0.87 (95% confidence interval: 0.81-0.92; P<.001), respectively. CONCLUSION A modified pediatric Bristol Stool Form Scale provided a high degree of interrater reliability, intrarater reliability, and agreement among pediatric gastroenterologists.

Pain Symptoms and Stooling Patterns Do Not Drive Diagnostic Costs for Children With Functional Abdominal Pain and Irritable Bowel Syndrome in Primary or Tertiary Care

OBJECTIVE. The objectives of this study were to (1) compare the cost of medical evaluation for children with functional abdominal pain or irritable bowel syndrome brought to a pediatric gastroenterologist versus children who remained in the care of their pediatrician, (2) compare symptom characteristics for the children in primary versus tertiary care, and (3) examine if symptom characteristics predicted the cost of medical evaluation. METHODS. Eighty-nine children aged 7 to 10 years with functional abdominal pain or irritable bowel syndrome seen by a gastroenterologist (n = 46) or seen only by a pediatrician (n = 43) completed daily pain and stool diaries for 2 weeks. Mothers provided retrospective reports of their childrens symptoms in the previous year. Cost of medical evaluation was calculated via chart review of diagnostic tests and application of prices as if the patients were self-pay. RESULTS. Child-reported diary data reflected no significant group differences with respect to pain, interference with activities, or stool characteristics. In contrast, mothers of children evaluated by a gastroenterologist viewed their children as having higher maximum pain intensity in the previous year. Excluding endoscopy costs, cost of medical evaluation was fivefold higher for children evaluated by a gastroenterologist, with higher cost across blood work, stool studies, breath testing, and diagnostic imaging. Symptom characteristics did not predict cost of care for either group. CONCLUSIONS. Despite the lack of difference in symptom characteristics between children in primary and tertiary care, a notable differential in cost of evaluation exists in accordance with level of care. Symptom characteristics do not seem to drive diagnostic evaluation in either primary or tertiary care. Given the lack of differences in child-reported symptoms and the maternal perspective that children evaluated by a gastroenterologist had more severe pain, we speculate that parent perception of child symptoms may be a primary factor in seeking tertiary care.

The interpretation of Rome III criteria and method of assessment affect the irritable bowel syndrome classification of children.

Aliment Pharmacol Ther 2011; 33: 403–411

Recurrent Abdominal Pain in Primary and Tertiary Care: Differences and Similarities

This study sought to identify child and parent characteristics differentiating children with recurrent abdominal pain seen by a pediatrician (RAP-Peds) from those seen by a gastroenterologist (RAP-GI). Children (7–10 years) and mothers in three groups (RAP-GI, RAP-Peds, and Controls) completed mother and child reports of childs functional disability, internalizing symptoms, and somatic complaints, and mother report of her anxiety and somatization. Child report did not differentiate groups. RAP mothers were more likely than Control mothers to focus on somatic complaints in themselves and their children. Mother report of child disability was strongly related to tertiary care for childs recurrent abdominal pain.

Psychosocial functioning and quality of life in children and families affected by AEC syndrome

Ankyloblepharon‐ectodermal defects‐cleft lip/palate (AEC) syndrome, also known as Hay–Wells syndrome, is a rare genetic condition that results in abnormalities of the skin, hair, nails, and teeth and requires frequent self‐management and medical care. We sought to describe the psychological adjustment and quality of life in children and adolescents with AEC syndrome, as well as the impact of the childs illness on their families. The sample included 18 children and adolescents with AEC syndrome and their parents who attended the International Research Symposium on AEC syndrome. Parents completed standardized self‐report questionnaires about child and family functioning and participated in a semi‐structured interview about the childs cognitive and social functioning and the impact of AEC syndrome on the child and family. Children completed standardized self‐report questionnaires of psychosocial functioning and quality of life. Overall, results reflected a range of functioning across children and families, with some families reporting few ill effects of the condition and others describing reduced quality of life and negative impact on child and family. Identifying the domains that may be impacted should help clinicians better screen for problems in functioning of children affected by AEC syndrome and their families.

Sa2019 Health-Related Quality of Life in Pediatric Functional vs. Organic Gastrointestinal (GI) Disorders: the Pedsql(tm) Gastrointestinal Symptoms Module

G A A b st ra ct s (33 PR, 232 PU) children completed 8/8 surveys of the study, 67 completed most surveys (67/8). Overall weekly prevalence of GI symptoms: AP (35.3%), nausea (25.5%), constipation (11.3%), diarrhea (8%), vomiting (7.3%). 56% of children with AP reported interference with activities: gym (18.9%), school (14%), difficulty sleeping (12.2%), social activities (10.6%). 2.5% of all children missed school for all causes during study period: 1.1% for AP. 5.7% of all children sought medical attention during study period (1% AP). Extra-GI complaints were common: pains in arms/legs (38.7%), headaches (30.8%) and chest pain (25.2%). Conclusions GI symptoms are common in school-aged children in Colombia and interfere with both daily activities and school attendance. The prevalence of AP and other GI symptoms found in this study were similar to published prevalence of American children using similar methods. Similarly to the American study, children rarely seek medical attention for AP.

M1198 Young Children with Functional Abdominal Pain (FAP) and Irritable Bowel Syndrome (IBS) Followed in Tertiary vs. Primary Care: Differences in Outcomes

ment. The mean duration of IBS and PI-IBS was 12.7 y and 12.5 y, respectively, both significantly longer than that of UFBD (9.8 y) and PI-UFBD (8.6 y; P=0.038). Compared with the other groups, patients with PI-IBS most often reported stopping leisure activities (P=0.017), canceling social plans (P=0.049), and avoiding planned activities (P=0.027) because of illness. International travel during the 6 months before illness onset was significantly more common in the PI-IBS (14%) and PI-UFBD (25%) groups compared with the idiopathic syndromes (4.5% of patients in both groups; P=0.006). A bout of acute diarrhea worsened established PI-IBS and PI-UFBD (50% of patients in both groups) more frequently than the corresponding idiopathic syndromes (25% and 18% of patients, respectively; P= 0.002). Conclusion. PI-IBS appeared to be as clinically severe as idiopathic IBS. International travel during the 6 months before onset of functional bowel disease was more common in patients with postinfectious than with idiopathic disease. As TD is potentially the cause of 16% to 22% of PI-IBS cases, TD prevention strategies may help decrease the incidence and worsening of PI-IBS. Studies are currently underway to further examine the relationship between enteric infection and functional bowel disease and to compare the pathophysiology and genetics of PI-IBS and idiopathic IBS.