Life In Pediatric Patients Research Articles

Health-Related Quality of Life in Pediatric Patients with Leukemia in Singapore: A Cross-Sectional Pilot Study.

There has been a paradigm shift in health service delivery to a more holistic approach, which considers Quality of Life (QoL) and overall functioning. Health-Related Quality of Life (HRQoL) is a multidimensional construct that encompasses physical functioning as well as psychosocial aspects of emotional and social functioning. This study explored factors related to HRQoL in Asian pediatric patients with leukemia in Singapore. The available variables included: age, treatment duration, household income, gender, ethnicity, religion, diagnosis, and phase of treatment. It is hypothesized that the relationships will be significant. In the current study, there were 60 patients (60% males) with leukemia; their ages ranged from 1 to 21 years (Mean = 8.03, Standard Deviation = 4.55). The hypothesis was partially supported. Age had a significant positive relationship with physical functioning, r(60) = 0.28, p < 0.05, physical health, r(60) = 0.28, p < 0.05, and the total HRQoL score, r(60) = 0.29, p < 0.05. Treatment duration had a positive relationship with school functioning, r(60) = 0.28, p < 0.05. All other correlations were statistically non-significant. The effects of the available psychosocial variables of gender, ethnicity, and religion were examined on scores from the Pediatric Quality of Life Inventory (PedsQL). Ethnicity had a significant effect on social functioning, U = 292.00, p < 0.05, r = 0.3 (medium effect size). Specifically, Chinese (Median = 85.00, n = 33) had significantly higher scores on social functioning than others (Median = 70.00, n = 27). The remaining comparisons were statistically non-significant. The current findings added to QoL research, and provided an impetus for more research in the area of HRQoL for children with leukemia in Singapore.

Health-related quality of life in paediatric patients up to five years post-treatment completion for acute lymphoblastic leukaemia: a systematic review.

Despite survival rates greater than 90%, treatment for paediatric acute lymphoblastic leukaemia (ALL) remains challenging for families. The early post-treatment phase is an especially unique time of adjustment. The primary aim of this review was to identify and synthesise research on health-related quality of life (HRQoL) for patients up to five years post-treatment. The secondary aim was to identify if theorised risk/resistance model factors could explain any variance in reported HRQoL. We conducted a systematic review using the PRISMA guidelines across five databases: Embase, Medline, Psychinfo, Pubmed, and Cochrane. Only studies examining HRQoL up to five years post-treatment were included. Studies were excluded if they covered periods greater than five years post-treatment or did not differentiate between patients with ALL and other cancers. After assessing the quality of each study sample size, patient characteristics, HRQoL outcomes and HRQoL correlates were extracted and summarised. A total of 14 studies representing 1254 paediatric patients, aged 2-18years, were found. HRQoL findings were mixed, dependent on time since completion and comparison group. Patient HRQoL was mostly lower compared to normative data, whilst higher compared to healthy control groups, patients on treatment, and patients with other types of cancers. Lower HRQoL was also found to be associated with demographic (age and sex), family dysfunction, and treatment-related factors. Completing treatment signalled a significant improvement in HRQoL for patients compared to being on treatment. Overall, however, HRQoL was still significantly lower than the population during the early post-treatment period.

Post-surgical chronic pain and quality of life in children operated for congenital heart disease.

Advances in medical technology have resulted in an increased life expectancy in pediatric patients with congenital heart diseases. Assessment of health-related quality of life is crucial to improving their healthcare status. We aimed to assess post-surgical pain prevalence and its impact on health-related quality of life in pediatric patients who underwent cardiac surgery during childhood. This cross-sectional study recruited patients aged 4years or older who underwent cardiac surgery for congenital heart disease at least 1year prior, during the age of 0-10years, and were admitted for post-surgical follow-up at our institute. The prevalence, intensity, and location of pain and health-related quality of life were assessed in an interview. Perioperative information was collected from the patients' medical records. Health-related quality of life was assessed using the Pediatric quality of life inventory 4.0 (PedsQL). Pain was reported by 24 (17%) of the 141 participants. One-third of them reported moderate to severe pain that required medical intervention. After adjustment for several confounding factors, multivariable linear regression analysis demonstrated that the presence of pain and the number of surgeries were associated with lower total PedsQL scores. Pain was present in 17% of the patients who underwent cardiac surgery during childhood. Presence of pain had a negative impact on long-term health-related quality of life after pediatric cardiac surgery.

Pain, sleep patterns and health-related quality of life in paediatric patients with cancer.

To compare sleep and health-related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalisation. A prospective comparative study was used to collect data from paediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n=118; 8-18years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72hr. Almost half of the participants (48.3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukaemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalisation. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.

P731 Characteristics and follow-up on body composition, physical activity and quality of life in paediatric patients with inflammatory bowel disease

P731 Characteristics and follow-up on body composition, physical activity and quality of life in paediatric patients with inflammatory bowel disease

Integration of genomic copy number variations and chemotherapy-response biomarkers in pediatric sarcoma

BackgroundWhile most pediatric sarcomas respond to front-line therapy, some bone sarcomas do not show radiographic response like soft-tissue sarcomas (rhabdomyosarccomas) but do show 90% necrosis. Though, new therapies are urgently needed to improve survival and quality of life in pediatric patients with sarcomas. Complex chromosomal aberrations such as amplifications and deletions of DNA sequences are frequently observed in pediatric sarcomas. Evaluation of copy number variations (CNVs) associated with pediatric sarcoma patients at the time of diagnosis or following therapy offers an opportunity to assess dysregulated molecular targets and signaling pathways that may drive sarcoma development, progression, or relapse. The objective of this study was to utilize publicly available data sets to identify potential predictive biomarkers of chemotherapeutic response in pediatric Osteosarcoma (OS), Rhabdomyosarcoma (RMS) and Ewing’s Sarcoma Family of Tumors (ESFTs) based on CNVs following chemotherapy (OS n = 117, RMS n = 64, ESFTs n = 25 tumor biopsies).MethodsThere were 206 CNV profiles derived from pediatric sarcoma biopsies collected from the public databases TARGET and NCBI-Gene Expression Omnibus (GEO). Through our comparative genomic analyses of OS, RMS, and ESFTs and 22,255 healthy individuals called from the Database of Genomic Variants (DGV), we identified CNVs (amplifications and deletions) pattern of genomic instability in these pediatric sarcomas. By integrating CNVs of Cancer Cell Line Encyclopedia (CCLE) identified in the pool of genes with drug-response data from sarcoma cell lines (n = 27) from Cancer Therapeutics Response Portal (CTRP) Version 2, potential predictive biomarkers of therapeutic response were identified.ResultsGenes associated with survival and/recurrence of these sarcomas with statistical significance were found on long arm of chromosome 8 and smaller aberrations were also identified at chromosomes 1q, 12q and x in OS, RMS, and ESFTs. A pool of 63 genes that harbored amplifications and/or deletions were frequently associated with recurrence across OS, RMS, and ESFTs. Correlation analysis of CNVs from CCLE with drug-response data of CTRP in 27 sarcoma cell lines, 33 CNVs out of 63 genes correlated with either sensitivity or resistance to 17 chemotherapies from which actionable CNV signatures such as IGF1R, MYC, MAPK1, ATF1, and MDM2 were identified. These CNV signatures could potentially be used to delineate patient populations that will respond versus those that will not respond to a particular chemotherapy.ConclusionsThe large-scale analyses of CNV-drug screening provides a platform to evaluate genetic alterations across aggressive pediatric sarcomas. Additionally, this study provides novel insights into the potential utilization of CNVs as not only prognostic but also as predictive biomarkers of therapeutic response. Information obtained in this study may help guide and prioritize patient-specific therapeutic options in pediatric bone and soft-tissue sarcomas.

Pain, skin sensations symptoms, and cognitive functioning predictors of health-related quality of life in pediatric patients with Neurofibromatosis Type 1.

The aim was to investigate pain, skin sensations symptoms and patient self-reported, and parent proxy-reported cognitive functioning as predictors of generic health-related quality of life (HRQOL) in pediatric patients with Neurofibromatosis Type 1 (NF1) from the perspectives of patients and parents. The Pain, Skin Itch Bother, Skin Sensations, and Cognitive Functioning Scales from the PedsQL™ Neurofibromatosis Type 1 Module and the PedsQL™ Generic Core Scales were completed in a multi-site national study by 323 patients and 335 parents. Patients were 5-25years of age. Pain and skin symptoms and cognitive functioning were tested for bivariate and multivariate linear associations with generic HRQOL. Pain, skin itch bother, skin sensations, and cognitive functioning were associated with decreased HRQOL in bivariate analyses (Ps < 0.001). In predictive analytics models, utilizing hierarchical multiple regression analyses controlling for demographic covariates, pain, skin itch bother, skin sensations, and cognitive functioning as a group accounted for 61 percent of the variance in patient-reported generic HRQOL (P < 0.001), reflecting a large effect size. For parent proxy-report, the predictor variables as a group accounted for 53% of the variance in generic HRQOL. Pain, skin symptoms, and patient self-reported and parent proxy-reported cognitive functioning are key predictors of generic HRQOL in pediatric patients with NF1. Delineating NF1-specific symptoms and cognitive functioning as high-priority predictors from the patient and parents perspective enhances a family-centered approach in clinical research, clinical trials, and clinical practice intended to improve the global generic HRQOL of pediatric patients with NF1.

Effectiveness of group art therapy on quality of life in paediatric patients with cancer: A randomized controlled trial

ObjectivesChildren with cancer undergoing chemotherapy experience many adverse effects. The effectiveness of painting- and handcrafting-based art therapy on the various dimensions of health-related quality of life in paediatric outpatients previously diagnosed with heterogeneity of malignancy was evaluated in the present study. DesignIn an experimental randomized controlled trial, a total of 60 children aged 7–13 years previously diagnosed with malignancy together with their parents were assigned randomly either to an experimental (30 patients) or a control group (30 patients) in 2017 in Iraq. The patients in the experimental group participated in painting and handcrafting group art therapy (creative art therapy) conducted by a professional fine artist for a one-month period. The dimensions of health-related quality of life in both study groups were measured through the KIDSCREEN-10 Index after project completion. ResultsThe patients in the experimental group were significantly more physically active and energetic (P < 0.001), were less depressed and emotional, and had fewer stressful feelings (P = 0.004). Moreover, they enjoyed their social and leisure time more and participated more in social activities (P = 0.003) in addition to an improvement in their relationships with other children (P = 0.043) and had better overall health status (P < 0.001). However, the children’s overall interaction with other children, parents, and healthcare providers (P = 0.074) and their perception of cognitive capacity for school performance (P = 0.257) were not significantly different between the two groups. ConclusionsThe findings of the study suggest that exposure to painting- and handcrafting-based art therapy improves the overall health-related quality of life in children with cancer.

The Impact of Adenotonsillectomy on Health-Related Quality of Life in Paediatric Patients

The Impact of Adenotonsillectomy on Health-Related Quality of Life in Paediatric Patients

The Impact of Adenotonsillectomy on Health- Related Quality of Life in Pediatric Patients

The Impact of Adenotonsillectomy on Health- Related Quality of Life in Pediatric Patients

Pain and sleep quality in children with non-vascular Ehlers-Danlos syndromes.

The objective of this study was to explore the factors contributing to quality of life in pediatric patients with non-vascular Ehlers-Danlos syndromes (EDS). Data were analyzed on 41 children with a diagnosis of non-vascular EDS from the de-identified data available from the National Institute on Aging (NIA) study of heritable disorders of connective tissue. Children under age 19 years were seen as part of a long-term evaluation project from 2003 to 2013 on a larger natural history of patients with heritable disorders of connective tissue. Data collected included medical history, physical examination findings, diagnostic study results, and responses on validated questionnaires. We reviewed a sub-cohort of children with a diagnosis of non-vascular EDS and explored pain severity and interference via the Brief Pain Inventory, and sleep quality via the Pittsburgh Sleep Quality Index. Pain severity had a strong correlation with pain interference, and both were similar to other disorders that include chronic pain reported in the literature. Sleep quality did not correlate with pain severity or interference, but all patients had poor sleep quality in comparison to historical controls. We conclude that pain and sleep are significant issues in the pediatric non-vascular EDS population, and future research may be directed toward these issues.

Characteristics and follow-up on body composition, physical activity and quality of life in paediatric patients with inflammatory bowel disease

Rationale: Paediatric inflammatory bowel disease (IBD), such as Crohn’s disease (CD) and ulcerative colitis (UC) is associated with malnutrition and weight loss affecting on body composition (BC). According to our knowledge there is no other follow-up study analysing BC, PA and QoL, therefore the aim of this study was to characterise these parameters in CD and UC patients, and to follow them for a 6 month long period of time.

Assessment of health-related quality of life in paediatric asthma patients

Background: Bronchial Asthma is one of the important chronic disease in children. This disease can affect the children mentally and physically in various aspects. Health related quality of life (HRQoL) has become an increasing important issue in the management of Asthma and it is how often used to evaluate the effectiveness of antiasthma drugs. The objectives of the study are to assess the health-related quality of life in Pediatric patients by using Pediatric Asthma quality of life questionnaire and also to assess the impact of parent education in health-related quality life of Asthma patient. The other intention of the study is to determine the anti-asthma drugs utilisation pattern in Pediatric patients.Methods: This study was conducted in in-patient and out-patient department of tertiary care Hospital for a period of 1 year. 145 pediatric patients were participated in this study. A comparative study was conducted to describe the HRQoL in asthma and the pediatric asthma quality of life questionnaire is used to determine the HRQoL of the subjects. Statistical analysis was performed using the instant prism ANOVA test and the Bartlett’s test. P &lt;0.05 was considered statistically significant.Results: This study shows that asthma is more common in male compared to female and most common type was Mild Persistent (47.85). Most of the patient are treated with bronchodilator (71%) followed by steroid (49%) and Leukotrien Antagonist (30.43%). Also revealed that most of the patients are taking multiple drug therapy compared to mono therapy. Quality of life having significant difference in all domains by comparing first visits score. Those suffering from the intermittent type of asthma showed higher mean quality of life score in all domains by comparing first visit score vs second visit score vs third visit score.Conclusions: The health-related quality of life having improvement in all domain and overall quality of life by comparing the initial visit to the follow up visits. The patient education plays major role in improving the quality of life of pediatric population and the quality of life score having relationship with gender, age educational status, severity of asthma and the drug utilization improving health related quality of life.

Quality of life in pediatric patients with tricuspid valve replacement

The article presents the results of the assessment of 52 patients' quality of life that had tricuspid valve prosthesis at the age from 1 to 16 years. Quality of life was evaluated by using a Nottingham Health Profile questionnaire. The data obtained suggests that quality of life in patients with tricuspid valve prosthesis is lower; it depends on the type of the operation performed, functional classes of cardiac decompensation and exercise tolerance. Besides, it is directly correlated with the right heart and BNP level.

Icatibant for the treatment of hereditary angioedema with C1-inhibitor deficiency in adolescents and in children aged over 2 years

ABSTRACTIntroduction: Hereditary angioedema (HAE) due to C1-inhibitor deficiency (C1-INH-HAE) is a rare disorder with life-threatening complications if untreated. It begins during childhood, and reduces the patient’s quality of life. Therefore, the availability of an easily administered agent to relieve unpredictable HAE episodes is indispensable for this age group.Areas covered: Randomized, double-blind, placebo-controlled, open-label extensions and prospective observational studies have proven the safety and efficacy of the subcutaneously administered bradykinin B2 receptor antagonist, icatibant, in the acute treatment of HAE episodes in adult C1-INH-HAE patients. Recently, a Phase 3, multicenter, open-label, non-randomized, single-arm study demonstrated the efficacy, safety, and tolerability of icatibant as an acute treatment for pediatric patients aged 2 years to less than 18 years.Expert commentary: The clinical study in pediatric patients showed that icatibant undergoes rapid absorption, reaches a therapeutic level, and promptly relieves the symptoms. It is well tolerated, and the subcutaneous preparation, presented in a pre-filled syringe, ensures ease of use. It can be administered anytime, anywhere, and instantly – even by the patients themselves, or – in the case of children and adolescents – by a caregiver. Icatibant may greatly contribute to the improvement of the quality of life of pediatric patients.

Implementation of a chemotherapy-induced nausea and vomiting dashboard.

e22519Background: Chemotherapy induced nausea and vomiting (CINV) negatively impacts the quality of life of pediatric patients receiving antineoplastic agents. Our objective was to prevent CINV usi...

Pain catastrophizing is associated with poorer health-related quality of life in pediatric patients with sickle cell disease.

BackgroundSickle cell disease (SCD) is an inherited disorder of the red blood cells and is associated with chronic multisystem involvement. While SCD has been associated with poorer health-related quality of life (HRQoL), there is a paucity of data on the relationship of psychological covariates other than anxiety and depression and quality of life (QoL) in children with SCD.Materials and methodsWe performed a cross-sectional study of psychological factors, HRQoL, and pain-related outcomes in participants with SCD and race-matched controls as part of a larger study of experimental pain phenotyping.ResultsPain catastrophizing was inversely correlated with HRQoL measured by the PedsQL™ Generic Core Scale in children with SCD, while this was not noted in control participants. Psychological factors, such as anxiety and depressive symptoms, were also associated with poorer HRQoL in both children with SCD and controls. We did not find an association of psychological factors with prior health care utilization. Psychological factors such as anxiety and depressive symptoms were inversely correlated with pain interference, but not pain intensity in SCD.ConclusionCatastrophizing is associated with poorer HRQoL in SCD, but in this study, it was not associated with pain intensity or interference and health care utilization in children with SCD. Further studies are needed to fully define the association of psychological factors including catastrophizing with QoL, pain burden, and SCD outcomes.

Health related quality of life in pediatric patients with inflammatory bowel disease

Inflammatory bowel disease (IBD) is a group of chronic pathologies that have impli cations in several factors that affect the quality of life in pediatric patients. To describe the health related quality of life (HRQL) in pediatric patients with IBD. A Multicenter cross-sectional descriptive study was conducted. Patients aged between 8-18 and with IBD diagnosis were included; IMPACT III quality of life questionnaire and a sociodemographic questionnaire were applied between September 2015 and January 2017. A total of 30 pa tients were recruited, 60% male, with an average age of 13.6 years. 80% of patients were diagnosed with Ulcerative Colitis (UC). The predominant pharmacological treatment was combined therapy in 63.3%, being the most frequent aminosalicylates and immunomodulator. The IMPACT III quality of life score had an average of 129,5 points and when analyzing by section, there was no statistically significant difference between the averages. In our sample, there was no correlation between HRQoL and the number of flares, disease duration gender. This is a first approach to the study of HRQoL in pediatric patients in Chile. Since HRQoL is an important aspect to be explored in the routine evaluation of IBD patients, the identification of a lower HRQoL is the first step to perform interventions in these patients, thus we recommend performing this measurement as a screening method in all of them.

Does Pain Intensity Matter? The Relation between Coping and Quality of Life in Pediatric Patients with Chronic Pain

PurposeChronic pain is a complex and debilitating chronic health condition that negatively impacts a child's daily function. Previous investigations of coping behaviors in youth with chronic illness have suggested that secondary control/accommodative coping may be more adaptive than primary control/active coping or disengagement/passive coping. However, studies have not considered how pain intensity may change the effect of various coping strategies on functioning in this pediatric population. The current study examines how coping strategies relate to health-related quality of life (HRQOL) in youth with chronic pain at various levels of pain intensity. Design and MethodsSixty-five children and adolescents, aged 8–18 (77% female: M=13.6years, SD=2.64) were recruited from a pediatric pain management clinic at an urban children's hospital. The Response to Stress Questionnaire examined coping behaviors of participants. The PedsQL 4.0 Generic Core Scales assessed HRQOL and a 10-cm Visual Analog Scale measured pain intensity. ResultsPrimary control engagement coping had a significant main effect to predict higher HRQOL. There was a significant interaction between secondary control engagement coping and pain, and a marginal interaction between disengagement coping and pain. Specifically, secondary control engagement coping significantly related to higher HRQOL when pain was low and disengagement coping marginally related to higher HRQOL when pain was high. ConclusionsFindings suggest that the effectiveness of specific coping strategies may vary depending on a child's level of pain. Practice ImplicationsThese findings suggest that clinicians (e.g., nurses, psychologists) use a more tailored approach when recommending interventions for managing chronic pain.

Quality of life in children with kidney transplant: Systematic review.

To identify in the literature studies that evaluate the quality of life in pediatric patients with kidney transplant through use of specific, validated instruments in Pediatrics. Systematic review of the literature with searches conducted in the following databases: Medline, PubMed, LILACS, CINAHL, SciELO and Cochrane Library. Main keywords: Quality of life, Kidney transplantation and Pediatrics. A total of 366 studies were selected and eight observational studies were included that evaluated the quality of life of children with kidney transplant by means of evaluation instruments of quality of life. The quality of life of children with kidney transplant is inferior compared to healthy children. The post-transplant period presents better results compared to pre-transplant children. The identification of mental, physical and social conditions related to the quality of life of this population allows for better planning the assistance provided to them.