Quality Of Life In Pediatric Patients Research Articles

Assessment of quality of life after laparoscopic GERD surgery in children: a prospective study.

There was a significant improvement in symptoms and their frequency after LARS in children, as well as an improvement of QoL, in the short and medium term. The impact of GERD should be taken into consideration in the treatment decision, given that surgery clearly improves the QoL. •Laparoscopic anti-reflux surgery (LARS) is an established and effective treatment option in pediatric patients with severe GERD refractory to medical treatment. •Effect of LARS on the quality of life (QoL) has been mainly investigated in the adult population but there is very little data on the effect of LARS on the QoL in pediatric patients. •Our prospective study was the first to analyze the effect of LARS on QoL in pediatric patients without neurologic impairment using validated questionnaires at two postoperative time points with a significant improvement in postoperative QoL at 3 and 12 months. •Our study emphasizes the importance of evaluating QoL and impact of GERD on all the aspects of daily life and of taking these into consideration in the treatment decision.

Childhood Atopic Dermatitis: A Nationwide Measurement of Quality of Life among Saudi Patients.

Atopic dermatitis (AD) negatively affects the quality of life (QoL). However, few studies from Saudi Arabia have assessed the effect AD has on the QoL of pediatric patients. To determine the psychological impact of AD on pediatric Saudi patients using the Children's Dermatology Life Quality Index (CDLQI). This cross-sectional was conducted across five tertiary hospitals located across five cities of Saudi Arabia from December 2018 to December 2019. The study included all Saudi patients aged 5-16 years who were diagnosed with AD for at least 6 months prior to visiting the dermatology clinic of the included hospitals. The quality of life in children with AD was assessed using the Arabic version of the CDLQI. A total of 476 patients were included, of which 67.4% were boys. AD had a very large and extremely large effect on the QoL in 17.4% and 11.3% of the patients, respectively; the QoL of only 5.7% of the patients was not impacted due to AD. The average CDLQI score was not significantly different between males and females (9.7 vs. 9.1, respectively; P = 0.4255). Domains related to symptoms and emotions were affected to a greater extent compared with the remaining domains, while the school domain was the least affected. The correlation between age and CDLQI (r = 0.04, P = 0.52) and between the duration of the disease and CDLQI (r = 0.062, P = 0.18) was not significant. This study found that AD affects the QoL of a significant proportion of the Saudi pediatric patients, thereby highlighting the need to consider QoL as a measure of treatment success.

Quality of life against seasonal vs perennial allergens: ESPRINT-15 modified in the pediatric population

Introduction: Allergic rhinitis (AR) is a clinical syndrome characterized by IgE-mediated inflammation of the nasal mucosa. The present study investigates the quality of life (QoL) with AR among adults, using widely validated questionnaires, unlike in pediatric patients. Materials and methods: A cross-sectional descriptive observational study was conducted, analyzing the QoL of 102 children with AR aged between 10-15 years, belonging to two health centers (HC) in Zaragoza and two HC in Coruña. The comparison of means between the two groups is carried out using the Student's test or the Mann-Whitney test, considering a value of p˂0.05 to be significant. Results: Around 102 children were studied, with a majority (59.8%) being male and a mean age of 12 years. Around 76.5% have a family history of atopy. It was found that AR is more prevalent in Zaragoza (p ˂0.005), and asthmais highly prevalent in Coruña (p ˂0.001). The most important sensitizations are pollen in Zaragoza (p ˂0.05) and dust mites in A Coruña (p ˂0.001). More treatment needs and associated comorbidities (p˂0.05) were observed in A Coruña. The results of the ESPRINT-15 show that 63% of the patients have a good QoL, 27% fair, and 8.8%, poor. Those sensitized to mites have a worse score (p = 0.02). It was found that 52% of children experienced improvement during home confinement, with no notable differences between the two populations. The use of the mask favored QoL in patients from Zaragoza (p ˂0.001). Conclusion: It was concluded that AR influences the QoL in pediatric patients. Greater QoL involvement, need for treatment, and comorbidities are observed in patients sensitized to dust mites compared to those sensitized to pollens. It was also observed that masks improved the symptoms, stopping patients being sensitized to pollens.

Early Initiation of Intermittently Scanned Continuous Glucose Monitoring in a Pediatric Population With Type 1 Diabetes: A Real World Study.

BackgroundUse of Continuous Glucose Monitoring (CGM) systems early in the course of diabetes has the potential to help glycemic management and to improve quality of life (QoL). No previous research has examined these outcomes in children-adolescents with type 1 diabetes (T1D) who use intermittently scanned CGM (isCGM) starting within the first month after diagnosis.AimTo evaluate the impact of isCGM early after T1D diagnosis, on metabolic control and QoL, comparing a group who started the use of the device within one month from the onset with another one who started at least one year later.Subjects and MethodsPatients who used isCGM within 1 month from T1D diagnosis were enrolled in group A; those who didn’t have the device during the first year were considered as control group (group B). HbA1c and total daily insulin were evaluated at 3 (T1), 6 (T2) and 12 (T3) months post-baseline (T0, diabetes onset), QoL after 1 year. In group A, isCGM glucose metrics were also recorded.Results85 patients were enrolled in group A and 67 patients in group B. In group A isCGM was well accepted during follow up: no patient dropped out; percentage of time with active sensor was in mean > 87%; number of scans/day remained stable. QoL was higher in group A than in group B both in children-adolescents (p<0.0001) and in parents (p 0.003). Group A presented lower HbA1c during the first year after diagnosis (p<0.001), and this data correlated with glucose management indicator (GMI), time in range (TIR) and mean glucose. The honeymoon period lasted more in group A than in B (p 0.028). Furthermore, the mean hypoglycemia duration decreased during follow-up (p 0.001) in group A.ConclusionsEarly use of isCGM, starting within the first month after diagnosis, improves metabolic control and QoL in pediatric patients with T1D.

Aspects of quality of life in pediatric lymphoma patients

Background. Quality of life (QL) is no less important question in modern oncohematology than longstanding survival rate and convalescence. Pediatric patients with lymphomas have high chances for recovery, that’s why it is important to provide a good QL during and after end of anti-cancer treatment. In Russia aspects of QL are not give up in pediatric oncohematology and used questionnaires are translated and poor adopted for our country.The study objective is to evaluate parameters of QL in pediatric patients with lymphomas and their parents during anti-cancer treatment and to assign abilities for improvement of QL.Materials and methods. From January 2018 to January 2020 fifty primary pediatric patients with lymphomas and fifty their parents were enrolled the study. All the patients were treated in the Chemotherapy Hemoblastoses Department No. 1 of Pediatric Oncology and Hematology Research Institute of N.N. Blokhin National Medical Research Center of Oncology of the Ministry of Health of Russia. The analysis of QL parameters was performed by Scale “Life satisfaction” of E. Diener, psycho-emotional tension was assessed by questionnaire “Your filling healthy” (for parents), mental activity, motivation, emotional tonus, psychic tension and comfort were analyzed by L.A. Kurgansky and T.A. Nemchin method.Results. 50 % parents and 60 % of children with lymphomas had medium level of life satisfaction. High life satisfaction level was unusual for respondents of pediatric age (0 %) and parents (8 %). During anti-cancer treatment children had low mental activity (60 %), motivation (44 %) and emotional tonus (60 %). It should be noted that psychic tension level in 60 % of children also was low.Conclusion. Anti-cancer treatment, stay in hospital, changed habitual condition favour to decrease QL of patients and their parents, which resulting in low mental activity, embrace of the world around, emotional tonus, not enough life satisfaction. For QL improvement it is necessary to work with psychologists, teachers, social workers, performing of art therapy. A large amount of work should be done with persons closest to child and parents, with whom they will communicate after end of treatment.

Effect of Mental Health Problems on the Quality of Life in Children with Lupus Nephritis.

IntroductionMental health problems, such as anxiety, depression, and ineffective family coping, in children with lupus nephritis (LN) can increase the severity and affect the management of the disease, thus affecting the quality of life (QoL) of patients.ObjectiveAnalyzing the association between levels of depression, anxiety, coping, disease activity on the QoL of pediatric patients with LN.Patients and MethodsThere were 62 pediatric LN participants (16 participants in the induction phase and 46 participants in the maintenance phase). Participants were measured for anxiety, depression, coping, disease activity (systemic lupus erythematosus disease activity index/SLEDAI), and QoL. The measurement results were compared between induction and maintenance groups. Analysis of the association between anxiety, depression, coping, and disease activity with the QoL of children with LN used a multiple logistic regression test with p <0.05.ResultsThe measurement results obtained anxiety (induction = 69.06±3.92 and maintenance = 45.24±10.33; p <0.001), depression (induction = 69.88±3.34 and maintenance = 42.20±9.12; p <0.001), coping (induction = 99.88±12.93 and maintenance = 115.67±7.34; p <0.001), SLEDAI (induction = 15.81±12.58 and maintenance = 0.43±1.26; p <0.001), and QoL (induction = 49.92±12.44 and maintenance = 88.15±8.06; p <0.001).. Anxiety level in the induction group (p = 0.043) and maintenance group (p <0.001; p = 0.032; p = 0.008; p = 0.009). Depression level in the induction group (p = 0.031) and maintenance group (p = 0.024; p = 0.042; p = 0.003). SLEDAI score in the maintenance group (p = 0.003; p = 0.003). Coping in induction group (p = 0.016; p = 0.016) and maintenance group (p = 0.005).ConclusionMental health disorders reduce the QoL of LN children, and the level of QoL in induction phase is lower than maintenance phase.

Quality of Life and Disease Impact of Atopic Dermatitis and Psoriasis on Children and Their Families.

Atopic dermatitis (AD) and psoriasis are common chronic skin diseases affecting children. These disorders negatively impact the quality of life (QoL) of patients in health-related aspects such as physical, psychosocial, and mental functioning. This health impact is more accurately represented when accounting for the numerous comorbidities associated with each disorder, and the impact the disorders have on patients’ families. A number of QoL tools have been developed and can be routinely implemented in the evaluation of QoL in pediatric patients and their caregivers. Ways to improve QoL include a multidisciplinary approach to care, education, and psychological support.

Novel seizure outcomes in patients with Lennox-Gastaut syndrome: Post hoc analysis of seizure-free days in rufinamide Study 303.

SummaryObjectiveDrug development for patients with Lennox‐Gastaut syndrome (LGS) is based on clinical trials that use drop seizure counts. However, such counts do not assess total seizure burden and affect a patient's quality of life (QoL). In this post hoc analysis, we evaluated two novel seizure efficacy parameters related to QoL in pediatric patients with LGS, using seizure diary data from rufinamide Study 303 (NCT01405053).MethodsStudy 303 was a phase III, multicenter, randomized, controlled, open‐label study involving patients aged ≥1 to <4 years with inadequately controlled LGS. Patients were randomized 2:1 to receive add‐on therapy with rufinamide or any other approved antiseizure drug (ASD), in addition to their existing treatment of 1‐3 ASDs, across a 106‐week treatment phase. Seizure diaries, completed by parents or caregivers, recorded seizure occurrence, and were used in this post hoc analysis to evaluate two novel efficacy parameters comparing baseline vs postbaseline mean number of seizure‐free days and assessing time to reach the number of prerandomization seizures for patients receiving rufinamide or any other ASD.ResultsPatients received rufinamide (n = 25) or any other ASD (n = 12). For rufinamide, mean number of seizure‐free days was 42.2% greater postbaseline compared with baseline (P < 0.0001); only one rufinamide patient experienced a decrease in number of seizure‐free days postbaseline. Median time to reach the baseline number of seizures increased by 10.5 days for rufinamide and 0.5 days for the any‐other‐ASD group during the treatment phase, to 46.0 and 54.0 days, respectively.SignificanceBoth of these novel and contrasting endpoints demonstrated potential improvements in seizure outcomes in patients receiving rufinamide postbaseline vs baseline. Although these parameters should be investigated in larger patient populations, our initial findings suggest that they could be applied as predefined primary endpoints for seizure assessment in future clinical trials for LGS drug development.

Study of impact of surgical intervention (adenotonsillectomy) and conservative management on quality of life in patients with SDB

&lt;p class="abstract"&gt;&lt;strong&gt;Background:&lt;/strong&gt; &lt;span lang="EN-IN"&gt;SDB is an important cause of morbidity in children. SDB has been associated with decreased quality of life (QOL). In this study, we tried to determine The impact of surgical intervention (adenotonsillectomy) and conservative management on quality of life in patients with SDB. &lt;/span&gt;&lt;/p&gt;&lt;p class="abstract"&gt;&lt;strong&gt;Methods:&lt;/strong&gt; &lt;span lang="EN-IN"&gt;A total of 112 pediatric patients were included with SDB, who visited our OPD. Diagnostic methods include history and physical examination, audiotaping or videotaping, pulse oximetry. OSA 18 questionnaire was used to assess the quality of life with conservative treatment (pre and post-treatment) and after surgical intervention-before and after adenoidectomy or adenotonsillectomy. &lt;/span&gt;&lt;/p&gt;&lt;p class="abstract"&gt;&lt;strong&gt;Results:&lt;/strong&gt; &lt;span lang="EN-IN"&gt;We had 112 patients with majority being males 69 (61.60%) and females 43 (38.30%), majority of patients were in the age group of 5-7 yrs (49.10%). In 47 patients (who underwent adenotonsillectomy/tonsillectomy), OSA-18 questionnaire was used pre-operatively, at 2 and 6 months. OSA-18 when used pre-operatively showed majority of patients 33 (70.21%) having score &amp;gt;80, and 14 (29.79%) patients having score between 60-80. No patient was below 60 score. Mean OSA-18 score pre-operatively was 84.15. OSA-18 score at 2 months and at 6 months were 30.06 and 26.40 respectively, which showed a lot of improvement in post-operative score and hence the post –operative quality of life. In 65 patients (conservative treatment) OSA-18 was used pre-conservative, at 2 and 6 months of treatment. OSA-18 when used before conservative treatment&lt;strong&gt; &lt;/strong&gt;showed majority of patients 44 (67.6 9%) having score 60-80, and 21 (32.30%) patients having score between &amp;gt;80. No patient was below 60 score. OSA-18 score at 2 months showed improvement in 69.23% patients (&amp;lt;40), OSA-18 at 6 months showed recurrence in 12.33% patients. &lt;/span&gt;&lt;/p&gt;&lt;p class="abstract"&gt;&lt;strong&gt;Conclusions:&lt;/strong&gt; &lt;span lang="EN-IN"&gt;SDB substantially impact QOL in pediatric patients. QOL significantly improves following adenotonsillectomy. There is subset of patients 12.33% with SDB in whom there was recurrence of symptoms after conservative treatment. Thus showing that conservative management is inferior to surgical management in the treatment of SDB. SDB improved after an observation period. Thus, observation with close follow-up is another treatment option.&lt;/span&gt;&lt;/p&gt;&lt;p&gt; &lt;/p&gt;

Psychosocial aspects of children and families treated with hemodialysis

The aim of this study was to analyze the selected psychosocial aspects of chronic kidney disease in children treated with hemodialysis (HD). The study included 25 children treated with HD aged 2 to 18 years and their parents. Data concerning the illness and socio-demographic parameters was collected. We used the Paediatric Quality of Life Inventory (PedsQL) for patients and for their parents the PedsQL-proxy version, General Health Questionnaire (GHQ-12), Berlin Social Support Scales (BSSS), and the Caregivers Burden Scale (CBS) to evaluate health-related quality of life (QoL) of HD children and their primary caregivers. In the PedsQL test, the QoL of HD children was lower than in healthy children. Children treated with HD assessed their QoL on the PedsQL questionnaire higher than the primary caregivers, on all subscales as well as an overall health-related QoL. Scoring below 2 on the GHQ-12 test was reported in 56% of mothers, which may indicate that psychological symptoms have intensified. There was no correlation between BSSS, CBS, and GHQ-12. The assessment of QoL in pediatric patients would allow for the earliest possible identification of their nonsomatic problems and irregularities. This could, consequently, contribute to improving QoL in both children with chronic kidney disease and their families.

Quality of life of children with lower limb deformities: A systematic review of patient-reported outcomes and development of a preliminary conceptual framework

Background: Lower limb deformities have a substantial impact on the quality of life (QOL) of children. This systematic review was conducted to identify as follows: (a) QOL concepts in existing literature specific to pediatric patients with lower limb deformities; (b) parent-reported outcome and patient-reported outcome (PRO) instruments used to measure QOL in pediatric patients with lower limb deformities; and (c) determinants of QOL in pediatric patients with lower limb deformities. Methods: MEDLINE, EMBASE, CINAHL, and PsycINFO were searched from the inception to January 2016. Studies were included if they (1) had patients with lower limb deformities; (2) included children 18 years of age or under; and (3) measured QOL using a PRO or parent-reported outcome of instruments. Results: Of the 938 publications identified in the search, 10 studies used a total of 24 PRO or parent-reported outcome instruments to measure 1 or more aspects of QOL of pediatric patients with lower limb deformities. Three overarching health concepts (physical, psychological, and social health) and 15 subconcepts were identified. Five studies looked at determinants of QOL including type of deformity, severity of deformity, complications postsurgery, stage of treatment, and type of treatment. Psychological health was measured in 10 studies, social health in 7 studies, and physical health in 6 studies. The most frequently measured subconcepts were physical function, psychological distress, and social function. Conclusion: Existing parent-reported outcome and PRO instruments measure 3 QOL concepts in children with lower limb deformities. There were no validated PRO instruments specifically designed to measure QOL of children with lower limb deformities. Level of Evidence: This was a systematic review of level III studies.

Quality of Life Impairment in Children and Adults with Vitiligo: A Cross-Sectional Study Based on Dermatology-Specific and Disease-Specific Quality of Life Instruments

Background: Vitiligo can negatively affect a patient's quality of life (QoL). A specific questionnaire has been developed and validated in the English language: the vitiligo-specific quality-of-life instrument (VitiQoL). The instrument was translated, culturally adapted and validated into Brazilian Portuguese (VitiQoL-PB). Objective: The aim of this study was to assess the QoL in adult patients through the VitiQoL and Dermatology Life Quality Index (DLQI) and in pediatric patients through the Children's Dermatology Life Quality Index (CDLQI) in a sample of patients with vitiligo. Methods: Subjects were selected from a dermatological outpatient clinic and from a private practice in Porto Alegre. The QoL of pediatric patients was evaluated using the CDLQI questionnaire. In adult patients we used the VitiQoL-PB and the DLQI. Results: A strong correlation between the scores of the total VitiQoL and DLQI was observed (r = 0.81; p < 0.001). The factor that most contributed to the final score of VitiQoL was stigma. In our sample, women had higher scores than men (p < 0.05). Psychiatric problems were associated with lower QoL. In the pediatric population, the median score of the CDLQI was 3 (interquartile range 1.3-7.3). There was a statistically significant correlation between the child's age and the CDLQI score (r_s = 0.41, p = 0.044). Conclusion: This study confirms that the VitiQoL is easy to administer and adds important information about the impact of vitiligo on a South American population. Stigmatization is very present in the disease. There are groups of patients that are more vulnerable, like women, patients with psychiatric diseases and adolescents.

Effects of parental gender and level of education on the quality of life and general health of pediatric patients with epilepsy: An outpatient cross-sectional survey.

The quality of life (QOL) of children with epilepsy has been widely studied, and several problems related to cognition, behavior, social lives, and physical activity among these children have been reported. Family life and parental care are important aspects of the lives of these patients. The impact of parental education on the QOL of pediatric patients with epilepsy is an understudied topic, especially in developing countries. In this study, we investigated the QOL and general health (GH) of patients with epilepsy presenting at the pediatric neurology clinic at Baqiyatallah Hospital and a private clinic. The Quality of Life in Childhood Epilepsy (QOLCE) questionnaire, which is a 92-item epilepsy-specific questionnaire covering physical activity, well-being, cognition, behavior, social activity, overall QOL, and GH, was used for interviewing parents. A total of 106 patients (m=61, 57.5% and f=45, 42.5%) aged 5-17years (mean: 10.31±2.91) participated in the study. Overall, there was no significant difference between the QOL and GH results of male and female patients. However, the maternal education level had a significant impact on the overall QOL (high school: 3.02±0.85 vs. B.Sc.: 3.67±0.61, p<0.05) and GH (high school: 2.81±0.79 vs. B.Sc.: 3.8±0.94, p<0.05) of male patients, while paternal education had no significant effect. A multiple linear regression showed that the maternal education level had an independently significant association with the physical activity of the patients (p=0.02, CI: 1.4-6.25), and the paternal education level had an independently significant association with the well-being of the patients (p=0.02, CI: 0.43-5.36). In addition, the maternal education level (high school vs. B.Sc.) had a significant effect on physical activity, well-being, cognition, and behavior for all of the patients (p<0.05), while the paternal education level (high school vs. B.Sc.) had no significant impact. However, in a comparison of high school vs. higher education, paternal education had a significant effect on patients' physical activity and well-being (p<0.05). We conclude that parental levels of education play a significant role in various aspects of the lives and GH of children with epilepsy. Maternal education, in particular, plays a significant role in GH and the overall QOL of male patients. Further research is suggested to identify the socioeconomic and cultural factors responsible for these findings.

ASSESSMENT OF QOL BY URTICARIA ACTIVITY SCORE IN PEDIATRIC PATIENTS WITH CHRONIC URTICARIA

There is no standard for assessing pediatric chronic urticaria in Japan. UAS7, weekly total values of the Urticaria Activity Score (UAS), has correlation with Dermatology Life Quality Index (DLQI) which assesses Quality of Life (QOL). The current European Academy of Allergy and Clinical Immunology (EAACI) guidelines recommend assessing disease activity in chronic urticaria by using UAS. We translated UAS into Japanese version, and evaluated usefulness of UAS by comparing with QOL score. Subjects were 42 patients who had received treatments in our clinic from February to September in 2014. They wrote UAS at home. They wrote Children's Dermatology Life Quality Index (CDLQI) when they visited hospital. We assessed correlation UAS7 with CDLQI. Male/Female ratio was 1:1. Median age was 7.5 years old. Duration of chronic urticaria was 5.5 months. Anti-histamine was used in 75%. UAS7 values reflected chronic urticaria patients' quality of life impairment. Change in UAS7 values reflected change in chronic urticaria patients' quality of life impairment. UAS may be a useful tool for assessing QOL in pediatric patients with chronic urticaria.

Peristeen(®) transanal irrigation in paediatric patients with anorectal malformations and spinal cord lesions: a multicentre Italian study.

In paediatric and adult patients with neurogenic bowel, transanal irrigation (TAI) of the colon has gained popularity due to the introduction of a specifically designed device. The aim of this pilot study was to present the results of TAI using the Peristeen(®) TAI system in a group of paediatric patients with anorectal malformation (ARM) and congenital or acquired spinal cord lesions (SCLs). Eight Italian paediatric surgery and spina bifida centres participated in the study. The inclusion criteria were age between 6 and 17years, weight above 20kg and unsatisfactory bowel management. Patients with chronic inflammatory bowel disease, mental disability and surgery within the previous 3months were excluded. At the beginning of treatment (T0) and after 3months (T1) the Bristol scale, a questionnaire assessing bowel function, and two questionnaires on quality of life (QoL) for patients aged 6-11years (CHQ-pf50) and 12-17years (SF36) were administered. Eighty-three patients were enrolled, and seventy-eight completed the study (41 ARMs, 37 SCLs). At T1, constipation was reduced in ARMs from 69% to 25.6% and in SCLs from 92.7% to 41.5%, faecal incontinence in ARMs from 50% to 18.6% and in SCLs from 39% to 9.8% and flatus incontinence in ARMs from 20.9% to 9.8% and in SCLs from 31.7% to 10%. At T0, the Bristol Stool Scale types were 1-2 in 45% of ARMs and 77.5% of SCL patients, whereas at T1 types 1-2 were recorded in only 2.5% of SCL patients. QoL improved in both groups. In the younger group, a significant improvement in QoL was recorded in ARM patients for eight of nine variables and in SCL patients for seven of nine variables. This study showed that Peristeen TAI resulted in a significant time reduction in colonic cleansing, increased independence from the carer and improved QoL in paediatric patients with ARMs and SCLs.

Abstract 16939: Pediatric Quality of Life While Supported With a Ventricular Assist Device

Introduction: The Ventricular Assist Device (VAD) has emerged as an important treatment option for bridging pediatric patients with heart failure to transplant. VADs have been shown to improve survival; however, quality of life (QoL) while supported with a pediatric VAD is unknown. Methods: In this prospective study, pediatric patients, and their parents, who underwent VAD placement completed a generic PedsQL 4.0 biweekly until heart transplant or death. Data are reported at last follow-up with a VAD and compared to three previously reported groups: age-matched healthy controls, outpatients with severe heart disease and children after heart transplant. Results: From December 2007 to August 2013, 13 patients received VAD support for at least two weeks and completed a PedsQL. The mean age at implant was 10.0 ± 4.2 years with a median duration of support of 1.6 months (Table 1). Pre-implant INTERMACS profile was 1 for 3/13 (23%) and 2 for 10/13 (77%). Patients self-reported significantly (p&lt;0.05) reduced total and physical QoL scores when compared to each of the three comparison groups. Self-reported psychosocial QoL scores were significantly lower than healthy controls only. Parent proxy-reported scores were significantly lower than all three comparison groups for all three categories (Figure 1). Conclusion: A large deficit exists in the QoL of pediatric patients supported by a VAD compared to outpatient management of severe heart disease or post-heart transplant patients; however, VAD patients do represent a sicker group. Improvements in QoL must be made, as time spent with a VAD is expected to increase. Though a small sample, these data can serve as a baseline for future comparison.

Evaluation of Health Related Quality of Life in 6–18 Years Old Patients with Acute Leukemia during Chemotherapy

To evaluate the quality of life (QOL) of Iranian children with acute leukemia during chemotherapy. One hundred patients between 6 to 18-years-old were selected by convenient sampling method. EORTC QLQ-C30 Questionnaire was completed by their parents' help. Demographic information such as age, sex and type of leukemia were also collected. These data were evaluated by SPSS software, Chi-square and independent sample T test. The relation between different scales of questionnaire and variables was measured and final results were compared with reference values. In acute Lymphoblastic Leukemia patients QOL, physical and cognitive functions were lower in comparison with acute myelogenous leukemia and they had more fatigue, pain and insomnia. The patients between ages of 12-18-years-old had more financial difficulties and diarrhea and lower cognitive function in comparison with 6-12-years-old patients. The present patients achieved higher scores than reference value, but they had more economic problem. The patients had relatively good QOL. The lowest impression was in cognitive function and the highest was in emotional function. The patients mostly complained of financial difficulties and fatigue and rarely of diarrhea and constipation. It is necessary to do more researches related to health related QOL in pediatric patients.

Quality of Life in Pediatric Patients Who Underwent Colectomy for Ulcerative Colitis

BACKGROUND: Chronic ulcerative colitis in children can have a negative impact on quality of life (QOL). Prior studies in adults suggest that colectomy leads to improved measures of QOL. AIM: To determine QOL in pediatric patients who underwent colectomy for ulcerative colitis. METHODS: All patients under 20 years of age who underwent colectomy for ulcerative colitis between 1980 and 2005 at UCSF Children's Hospital were recruited. Of 31 patients contacted, 16 completed the validated QOL Questionnaire for patients with inflammatory bowel disease (IBDQ-32; McMaster University in Ontario, Canada) and an additional questionnaire that addressed bowel function and reproductive health. Each question was rated on a scale of 1 (“all of the time”) to 7 (“none of the time”); total scores ranged from 32 to 224, higher scores indicating a better QOL. Data are presented as Mean±SD. RESULTS: Age at the time of diagnosis was 11.2±3.7 (range 3 to 16) years. Age at colectomy was 13.3±3.7 (6 to 19) years. All but 5 had at least one surgery since colectomy; one had 11 surgeries. Twelve patients (75%) reported no increase in frequency of bowel movements. Pouchitis was reported by 9 (56.3%). The survey was administered 8.7±6.2 (2 to 24) years postcolectomy. Total scores were 159.7±43.3 (58 to 210). Two patients (12.5%) had overall IBDQ scores of ≥200, ten (62.5%) had scores of 151-199, two (12.5%) had scores of 101150, and two (12.5%) had scores ≤100. The two patients with scores ≤100 had repeated episodes of pouchitis (16-30 episodes) compared with the other 14 patients (0-3 episodes). Systemic symptoms (fatigue, difficulty sleeping, and maintaining weight) had the lowest scores (4.2±1.9). Social function (attending social engagements, work or school) had the highest scores (5.6±2.0), and 6/16 patients (37.5%) had scores of 7 (maximum) across all social function questions, which was not found for any other system. Patients continuing to have loose bowel movements had the lowest overall scores (3.6±2.2, range 1-7). Patients with no or minimal rectal bleeding had the highest scores (6.5±1.2, range 3-7). Children who underwent colectomy before 14 years of age had higher scores (better QOL), and children diagnosed before 12 years of age had better QOL than children diagnosed at age ≥12 years (QOL: 5.5±1.0 vs 4.3±1.6). QOL relating to sexual function was highly rated (5.4±2.1; range 2-7). CONCLUSIONS: Measures of QOL in pediatric patients undergoing colectomy for ulcerative colitis show highest QOL scores in social function. Younger age at time of colectomy and of diagnosis, specifically under 12 years of age, leads to greater improvement of QOL. Complications determined by recurrent surgeries or fecal soiling are common, but only pouchitis appears to detract from improved overall QOL.

Quality of life in children and adolescents with obsessive-compulsive disorder: base rates, parent–child agreement, and clinical correlates

The presence of obsessive-compulsive disorder (OCD) has been linked to decreased quality of life (QoL) among adults, yet little is known about the impact of OCD on QoL in pediatric patients. Sixty-two youth with OCD and their parent(s) were administered the Children's Yale-Brown Obsessive Compulsive Scale following a clinical interview. Children completed the Pediatric Quality of Life Inventory and parents completed the Pediatric Quality of Life Parent Proxy Inventory and Child Behavior Checklist. QoL scores for OCD patients were significantly lower than for healthy controls, but similar to QoL in a general psychiatric sample on the majority of domains. Parent-child agreement on QoL was moderate to strong across age groups. Results indicate that, in youth with OCD, QoL is reduced relative to healthy controls, related to OCD symptom severity per parent-report, and are strongly predicted by the presence of comorbid externalizing and internalizing symptoms.

Abstract 5709: The Pediatric Cardiac Quality of Life Inventory: A New Reliable and Valid Disease-specific Quality of Life Measure for Children and Adolescents with Congenital and Acquired Heart Disease

The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a self-administered disease-specific quality of life (QOL) tool with patient and parent-proxy reporting (Child form 8 –12 yrs; Adolescent form 13–18 yrs), designed to assess the QOL of pediatric patients with congenital and acquired heart disease (CHD, AHD). Our purpose was to evaluate the reliability and validity of the PCQLI Seven centers recruited CHD and AHD patients age 8 –18 yrs. Patient-parent pairs completed the PCQLI, a generic QOL tool (PedsQL), and non-QOL questionnaires [Self Perception Profile for Children/Adolescents (SPPC/A); Youth Self Report and Child Behavioral Checklist (Achenbach)]. Test-retest reliability was evaluated by administering the PCQLI at 2 time points, and was assessed by Spearman correlation coefficient. Validity was tested by assessing: differences in PCQLI score among heart disease subgroups; associations between PCQLI score and the number of cardiac surgeries, catheterizations, hospitalizations, and doctor visits; the correlation between patient and parent PCQLI scores; and correlations between PCQLI score and the scores generated by generic QOL and non-QOL tools. The study was completed by 1486 patient-parent pairs. Heart disease subgroups included: biventricular repair (45.4%); Fontan palliation (12.6%); unrepaired CHD (12.0%); heart transplant (4.4%); and AHD (25.6%). Correlations evaluating test-retest reliability were high (r=0.78 – 0.90). Lower PCQLI score was associated with Fontan palliation (p&lt;0.001), as well as a greater number of cardiac surgeries, catheterizations, hospitalizations, and doctor visits (all p&lt;0.001). Disattenuated correlations between patient and parent PCQLI scores were moderate (r = 0.51– 0.69). The PCQLI score and generic QOL score were highly associated (r = 0.62– 0.77). Lower PCQLI score was strongly associated with lower Global Self-Worth score on the SPPC/A (p&lt;0.001), and lower Total Competency score (p&lt;0.001), higher Syndrome Scale scores, and higher DSM Oriented Scale scores on the Achenbach (p&lt;0.001). The PCQLI is a new disease-specific pediatric cardiac QOL tool that produces reliable and valid scores in children and adolescents age 8 –18 yrs. This research has received full or partial funding support from the American Heart Association, AHA Great Rivers Affiliate (Delaware, Kentucky, Ohio, Pennsylvania &amp; West Virginia).