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Health-Related Quality of Life for Chronically Ill Children
Abstract
Approximately 43% of children in the United States (32 million) are currently living with at least 1 of 20 common chronic childhood illnesses. The most common chronic childhood illnesses are asthma, cystic fibrosis, diabetes, obesity, malnutrition, developmental disabilities, cerebral palsy, consequences of low birthweight, and mental illness. For all chronically ill pediatric populations, the outcome of health-related quality of life (HRQOL) is particularly important because many of these children have not and will not be cured, and will continue to manage their chronic illness into adulthood. Advances in biomedical science and technology continue to improve efficacy of treatments and care for chronically ill children, adolescents, and their families, which highlight the importance measurement of HRQOL as a treatment and health status outcome. The construct of HRQOL is subjective, multidimensional, dynamic, and unique to each individual. It includes aspects of physical, psychological, social function and goal attainment. Outcomes of HRQOL now include the financial implications for these children, their families, as well as financial and organizational consequences for healthcare planning and delivery of services.This article reviews the importance of HRQOL as a health outcome for chronically ill children. A historical overview and synthesis of the conceptualization and measurement of HRQOL for the chronically ill pediatric population is provided. Current research investigations that have measured health outcomes using individual scales tailored to children's specific symptoms health outcomes, such as PROMIS®-Patient Reported Outcomes Measurement Information System-are reviewed. The clinical applications of HRQOL outcomes research include facilitation of patient-healthcare provider communication, improved patient satisfaction, identification of hidden morbidities, a positive impact on clinical decision making, and improvement of patient outcomes over time.
... HRQOL is a multidimensional construct that includes functioning and well-being in physical, mental, and social health . Measuring HRQOL in the clinical setting can improve patient-provider communication and patient satisfaction, uncover unknown morbidities, facilitate clinical decision-making, and improve patient outcomes (Cantrell & Kelly, 2015). A recent literature review on HRQOL in RB survivors found few U.S.-based studies with mixed results reflecting both positive and negative outcomes (Belson, et al., 2020). ...
... HRQOL is an important measure that can improve patient-provider communication and patient satisfaction, reveal unknown morbidities, facilitate clinical decisionmaking and improve healthcare outcomes over time (Cantrell & Kelly, 2015). Our findings that AYA RB survivors have overall similar HRQOL to their peers can provide reassurance to parents of young children diagnosed with RB. ...
Background: Retinoblastoma (RB) is a malignant intraocular tumor diagnosed in early childhood that requires extensive medical and surgical treatment at a young age. Health-related quality of life (HRQOL) is thought to be diminished due to visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, few studies have identified variables associated with HRQOL among those with RB. Purpose: To compare HRQOL of adolescents and young adults (AYAs) with RB to matched controls and to identify predictors of HRQOL in RB survivors. Methods: Using a cross-sectional design, 198 AYAs (101 RBs and 97 controls) completed HRQOL (PROMIS®-29 profile) and psychosocial questionnaires (Rosenberg self-esteem scale, multidimensional scale of perceived social support, and Hollingshead index for socioeconomic status). Clinical variables (age at diagnosis, visual acuity, laterality, heredity, treatment regime, and anesthesia exposure) were extracted from the medical record. Correlates of HRQOL were estimated using linear regression models. Results: RB survivors reported similar HRQOL compared to controls. Physical function (p < .001), social support (p = .013), and self-esteem (p = .028) were lower in the RB group compared to controls. Visual acuity and self-esteem accounted for 52% of the variance in PROMIS physical health summary scores and self-esteem accounted for 38% of the variance in mental health summary scores. Conclusion: Despite deficits in physical function and self-esteem HRQOL in RB survivors was comparable to healthy counterparts. However, the majority of RB survivors in this study had normal visual acuity. Clinicians should explore ways to enhance self-esteem in RB survivors.
... This is especially useful for assessing students with chronic disease s [15,16,25]. This scale has been widely used in the subjective health evaluation of children with different diseases, for analyzing the different health dimensions of patients, and for the implementing targeted interventions to improve the effectiveness of diagnosis and treatmen t [26,27]. At present, the PROMIS questionnaire is insufficiently applied in the field of subjective health for normal students. ...
Background:
The focus of students' health concerns has gradually progressed from the single factor of physical health to comprehensive health factors, and the physical and mental health of students are now generally considered together. This study focuses on exploring the status of junior high school students' physical health and their subjective health assessment with the major societal factors that affect students' lives: School Life and Family involvement. In addition, we explore the main factors influencing students' subjective health.
Methods:
A cross-sectional survey was conducted with 190 Tibetan junior high school students in the Maozhuang Township. The intentional sampling was used to choose the research object. The structured questionnaire comprised four parts, namely social and demographic information, family condition, school life, and subjective health quality which was assessed by PROMIS (Chinese version of the Pediatric Patient-Reported Outcomes Measurement Information System).
Result:
The average height and weight of boys and girls are statistically different (p-values of 0.026 and 0.044, respectively), but there is no statistically significant difference in BMI (Body Mass Index) between boys and girls (p-value of 0.194). The average values of the five dimensions of depression, anger, anxiety, fatigue, and peer relationships in the PROMIS of the research subjects were 58.9 ± 5.3, 53.3 ± 8.0, 58.1 ± 7.3, 52.8 ± 8.0, 39.3 ± 6.6. In the demographic dimension, the grade was the main factor influencing anger (p < 0.01) and fatigue (p < 0.01), while gender was related to peer relationships (p = 0.02). In the family dimension, the father's educational level was related to peer relationships (p = 0.05), while the family financial situation was related to depression (p = 0.01). In the school life dimension, relationship with classmates was found to affect anger (p = 0.05), while homework was related to anxiety (p = 0.02) and fatigue (p = 0.05).
Conclusion:
the physical health index BMI and subjective health evaluation of students are worse than students of more developed areas in China. Their family environment and school life all have varying degrees of impact on the five subjective health outcomes. There are differences in gender and grade level. The government and society need to pay more attention to the physical and mental health of students in remote and underdeveloped areas and improve their health through a student nutrition plan and the establishment of mental health offices.
... Research findings reveal that regardless of the illness, several factors may influence an individual's perception within the physical, psychological, and social domains of HRQOL. In children with chronic illnesses, HRQOL is significant because of the ramifications of the illness and length of treatment, which often involves management well into adulthood (Cantrell & Kelly, 2015). ...
Purpose
The purpose of this study was to examine the health-related quality of life (HRQOL) of female children with CAH as reported by children and their caregivers.
Design and methods
A convergent mixed methods design was selected whereby quantitative and qualitative results were merged to provide a comprehensive understanding of HRQOL of children. Semi-structured interviews were conducted with 20 child-caregiver dyads. The full sample of child-caregiver dyads (N = 25) completed KINDL-R questionnaires, which provided a quantitative measure of children's HRQOL.
Results
Children and their caregivers reported good overall HRQOL. Children scored significantly lower on the KINDL-R School subscale compared to their caregivers. Associations were observed between the HRQOL score from one graphic rating scale item and the child's other health issues and child's diagnosis. Themes emerging from the child and caregiver interviews were health-related quality of life, impact of stigma on psychological well-being, information-sharing and disclosure of CAH, and improving the quality of life of children with CAH.
Conclusion
This mixed methods study provided evidence to understand the health and complex needs of children with CAH.
Implications
Clinicians may better support children and caregivers by expanding the focus beyond medication management to include: 1) psychological support and resources (i.e., developmentally appropriate coping and adaptation strategies); 2) continuous education for clinical staff, school nurses, emergency medical transport staff, and providers; and 3) public awareness beyond the clinic and hospital settings.
... Mit zunehmendem Alter der Heranwachsenden nimmt die gLQ ab, wobei der Rückgang bei Mädchen im Vergleich zu Jungen stärker ausfällt [8,10]. Internationale und nationale Studi-en verweisen darauf, dass die gLQ bei Kindern und Jugendlichen mit chronischen Erkrankungen und psychischen Auffälligkeiten geringer ist [8,[11][12][13][14][15][16]. Zu den am häufigsten auftretenden körperlichen chronischen Krankheitsbildern bei Heranwachsenden, die sich zudem nachteilig auf die gLQ auswirken, zählen Asthma [8,12,17,18], Neurodermitis [19,20] und Adipositas [12,21,22]. ...
Hintergrund
Die gesundheitsbezogene Lebensqualität (gLQ) hat sich als Maß für das gesundheitliche Erleben und Verhalten von Kindern und Jugendlichen zunehmend etabliert. Das Ziel dieser Studie ist die Beschreibung der aktuellen gLQ bei 11- bis 17-jährigen Kindern und Jugendlichen in Deutschland unter Berücksichtigung von häufigen chronischen Erkrankungen (Asthma bronchiale, Neurodermitis, Adipositas, ADHS) und von psychischen Auffälligkeiten.
Methoden
Für die Analysen wurden die Angaben von insgesamt 6599 Heranwachsenden (51,9 % Mädchen; 48,1 % Jungen) aus KiGGS Welle 2 (2014–2017) ausgewertet. Der mehrdimensionale KIDSCREEN-27 diente der Darstellung der gLQ. Die untersuchten chronischen Erkrankungen und die psychischen Auffälligkeiten wurden durch verschiedene Indikatoren abgebildet.
Ergebnisse
Unterschiede in der gLQ ergaben sich in Abhängigkeit von Alter und Geschlecht. Bei älteren Mädchen war die gLQ in allen Dimensionen niedriger als bei jüngeren Mädchen. Bei Jungen sind die altersbezogenen Unterschiede geringer. Die gLQ von Heranwachsenden mit chronischen Erkrankungen und psychischen Auffälligkeiten war niedriger als in der jeweils gesunden Vergleichsgruppe. Unterschiede zeigten sich auch im Vergleich der untersuchten Krankheiten und gesundheitlichen Belastungen. Insbesondere für Kinder und Jugendliche mit Adipositas und psychischen Auffälligkeiten ergab sich eine niedrigere gLQ.
Diskussion
Die Unterscheidung verschiedener Dimensionen der gLQ ermöglicht die differenzierte Abbildung von Alters- sowie Geschlechtseffekten und erlaubt eine detaillierte Einschätzung der Auswirkungen von chronischen Erkrankungen und psychischen Auffälligkeiten. Diese Ergebnisse unterstreichen die Bedeutung der gLQ als Indikator des subjektiven Gesundheitszustands bei Kindern und Jugendlichen.
... Previous researchers noted that parents tend to overlook emotional functioning due to their overarching concerns regarding their child's physical health (Cantrell & Kelly, 2015). Therefore, the theoretical underpinning that all perspectives are important in developing a comprehensive treatment plan for the child of focus takes into account the varying views of the child's prognosis and diminishes the potential oversight of the child's mental well-being during and post-treatment for chronic illness. ...
The multifaceted challenges faced by children with chronic illnesses illuminate a need for additional supports focusing on this population’s mental health. Although child life (CL) services and specialists support the immediate needs of the children, there is still an absence of resources to serve the long-term mental health needs of children with chronic illnesses. Adlerian play therapy (AdPT), an evidence-based intervention, is a developmentally responsive approach to counseling children and is compatible with hospital settings. This article provides guidelines for integrating AdPT into the existing system through the guidance of the pediatric medical traumatic stress (PMTS) model.
... As healthcare shifts to a more patient-centered approach, HRQL and measures of fatigue become more important measures of health outcomes [11,12]. HRQL questionnaires are short, validated screening tools that are particularly useful when treating children with chronic conditions, such as CAH, to understand how the disease and therapy impact physical, emotional, and social functioning [13]. There are only two previous studies that examined QoL in children with CAH using validated HRQL screening tools [3,4]. ...
Background
Children with congenital adrenal hyperplasia (CAH) require life-long glucocorticoid replacement and have daily intermittent hyper/hypocortisolemia and hyperandrogenemia. Health-related quality of life (HRQL) is important for understanding the impact the disease and therapy have on physical, mental, emotional, and social functioning. Little is known about HRQL in CAH. We compared HRQL in children with CAH to healthy norms and examined how these scores related to physiologic variables.
Methods
A cross-sectional study examined 45 patients (mean age 8.2(4.5) years). Thirty-two self-reported their quality of life (QoL) on the PedsQL™ Generic Core Scale and PedsQL™ Fatigue Scale, and 44 parents completed a parent report. Bone age Z-scores were calculated from the most recent bone age.
Results
Children with CAH did not report lower QoL than healthy norms. However, their parents reported lower overall QoL and fatigue scores than parents of healthy norms. Children with CAH rated sleep poorer than their parents. QoL scores did not differ by sex or CAH subtype and were not associated with total daily hydrocortisone dose. Bone age Z-scores were negatively associated with child-reported emotional health and cognitive fatigue.
Conclusions
Parents of children with CAH reported a negative impact of disease on their children’s QoL, but their children did not. The negative associations between bone age Z-scores and emotional health and cognitive fatigue suggest an impact from chronic hypocortisolemia and hyperandrogenemia.
... The Association of Pediatric Hematology Oncology Nurses (2014) supports evidence-based practice guidelines and encourages research efforts to optimize outcomes for children, adolescents, and young adults with cancer. As noted by Cantrell and Kelly (2015), HRQOL outcomes can help in the development of evidence-based clinical practice guidelines to address the short-and longterm health and psychosocial issues, behavioral health, and lifestyle management issues for chronically ill pediatric patient populations. The objective of this study was to provide evidence of the relationships between selfesteem, hopefulness, and HRQOL in order to further build the evidence base to support the art and science of clinical pediatric oncology nursing practice that promote the critical treatment outcome of HRQOL. ...
Research has shown that self-esteem and hopefulness are positively related among female childhood cancer survivors (CCS) and contribute to their health-related quality of life (HRQOL). HRQOL remains a significant outcome of treatment for CCS. This study examined the relationships among self-esteem, hopefulness, and HRQOL in young adult female CCS to inform the development of evidence-based practice guidelines for pediatric oncology nursing practice. An online survey was conducted with a sample of young adult female CCS from 58 treatment centers across the United States at 4 time points: at baseline and at 6 weeks, 3 months, and 6 months after initial measurement time. The relationships between self-esteem, hopefulness, and HRQOL were statistically significant (Time 1, P = .05; Times 2, 3, and 4, P = .01) across all measurement times. These findings identify hopefulness and self-esteem as determinants of HRQOL and suggest that caring practices among pediatric oncology nurses that support psychosocial adjustment through promoting self-esteem and hopefulness have the potential to support HRQOL among young adult female CCS. These outcomes support the development of evidence-based practice guidelines to influence HRQOL outcomes among these survivors.
Background:
. Children with Cerebral Palsy (CP) have complex conditions affecting their health which makes it challenging for assistive technology professionals to achieve desired intervention outcomes. Persons with CP identify quality of life (QOL) as one of the most important outcomes to examine when determining the helpfulness of treatment .
Objective:
Investigators aimed to complete a scoping review of QOL-related postural care (PC) publications, identify QOL-based assessments and critically analyze their suitability in measuring intervention outcomes for children with non-ambulatory CP.
Methods:
Investigators searched articles published between 1998-2022 relevant to children with CP that addressed QOL-related: meanings/domains, outcome measures and clinical intervention outcomes. Investigators followed the PRISMA scoping review guidelines and integrated the recommendations proposed by Westphaln et al. (2021), which built upon Arksey and O'Malley's framework (2005) for article selection and summarization. Subsequently, investigators conducted an analysis of the PC outcome measures identified in the review process, examining their suitability for the target population using Coster's (2013) questions.
Potential impact:
Results of this review will help care teams understand QOL and choose outcome assessments capable of measuring QOL-related intervention changes. Thus, making it possible for them to better serve children with severe CP.
Objective:
Adolescents and young adults (AYA) living with chronic illness are as sexually active and interested in having children as healthy peers. Few studies have examined the intersection of managing chronic illness and concerns about realizing reproductive goals, including fertility, pregnancy, childbirth, and parenting. Even less is understood regarding how these concerns might be associated with psychological distress. This study examines associations between the reproductive health concerns (RHC) and health-related stress of AYA patients living with chronic conditions including rheumatologic, cardiac, pulmonology, gastrointestinal disorders, and solid organ transplant.
Methods:
A total of 140 patients aged 15 to 20 years (68% female; 81% Hispanic/Latinx) recruited from a transition program located at a safety-net pediatric institution completed surveys examining multiple dimensions of RHC and health-related quality of life (life satisfaction, illness burden, and illness-related anxiety) and condition-related stress. Exploratory factor analyses of RHC variables yielded 3 factors used in regression analyses to identify convergent validity of RHC factors with health-related mental health measures.
Results:
Three RHC factor loadings emerged: concern about availability to raise children (timing/future), impact of condition/medication on fertility and childbearing (pregnancy/fertility), and impact of condition on motivation to have children (motivation/decision-making). Positive associations were found between all RHC factors and illness-related anxiety; condition-related stress was associated with motivation/decision-making.
Conclusion:
RHC, health-related anxiety, and stress can impede healthy sexual and reproductive health and development of AYA living with chronic conditions. Providers' proactive exploration of patients' concerns about their reproductive future can offer critical support as they navigate the unique existential challenges of early adulthood.
Purpose:
To assess quality of life and participation in children with disabilities following a community-based yoga class, to examine the feasibility of implementing a community-based program with individualized support, and to make recommendations for the development of future programs.
Summary of key points:
Four children participated in a 10-week yoga class, with doctor of physical therapy students providing individualized physical and behavioral support. Children improved in components of the Children's Assessment of Participation and Enjoyment (CAPE) following the program; however, changes in quality of life on the Pediatric Quality of Life Inventory (PedsQL) were inconsistent. Parents provided feedback regarding the family's experience and reported that the children improved behavior, communication, and relationships following the yoga class.
What this case adds to evidencebased practice:
A community-based yoga class for children with disabilities using individualized support is feasible and can improve participation and enjoyment in recreational activities.
Purpose
The purpose of this research was to describe the health-related quality of life (HRQoL) perceptions of parents of children diagnosed with osteogenesis imperfecta (OI).
Design and Methods
This research used a descriptive design with a comparative sample. The Child Health Questionnaire (CHQ-PF 28) parent form was used to assess HRQoL in a sample of 37 parents from a mid-western tertiary pediatric hospital OI specialty clinic. Comparisons were made with a sample of parents of well children.
Results
Parent HRQoL perception scores were described in both the physical and psycho-social-emotional domains. The domains of physical function (PF), bodily pain (BP), general health (GH), parent impact-emotional (PE), and child self-esteem (SE) were the lowest HRQoL mean domain scores for the parents of the children diagnosed with OI. Ceiling and floor scores were calculated to describe the magnitude of the differences between the mean HRQoL perception domain scores of the two parent groups.
Conclusions
Low HRQoL physical and psycho-social-emotional mean domain scores in conjunction with small percentage scores in the ceiling (and greater percentage scores in the floor) for parents of children diagnosed with OI were described. Findings suggest the on-going need for research to identify interventions to promote physical functioning for the child diagnosed with OI. Outcome based programs for parent and family-centered psycho-social self-care should be developed. Practice Implications: ip Comprehensive and longitudinal assessment of HRQoL for both parents and their children diagnosed with OI will assist in documenting the outcomes of interventions for the management of chronic care.
Introducción: La enfermedad renal en los niños causa diferentes cambios que pueden alterar su calidad de vida; por esta razón, es importante que el profesional de salud busque estrategias que contribuyan a disminuir las secuelas y mejorar la calidad de vida del niño. Objetivo: Caracterizar la calidad de vida de los niños de 8 a 18 años, con diagnóstico de enfermedad renal crónica, según el instrumento KIDSCREEN-27 de una institución de salud de la ciudad de Bogotá (Colombia). Método: Estudio descriptivo de corte transversal con una población de estudio de 62 niños con diagnóstico de enfermedad renal crónica con edades entre 8 y 18 años que asistieron a la consulta de nefrología pediátrica. Resultados: Se analizaron cinco dimensiones, donde cada una tuvo un puntaje ponderado mayor a 70, que se relaciona con una buena calidad de vida; la dimensión con menor puntaje, la de actividad física, tuvo un puntaje de 70,1, y la dimensión de estado de ánimo y sentimientos obtuvo el mayor puntaje, 80,8. Conclusiones: La enfermedad renal crónica puede alterar la calidad de vida, sobre todo en la dimensión de actividad física y entorno escolar. Es primordial que se planteen programas que tengan en cuenta las cinco dimensiones, pero especialmente las que obtuvieron menor puntaje, con el fin de mejorar la calidad de vida de los niños con esta enfermedad.
Background
Research on living with a chronic disease (CD) in adolescence is increasing. However, studies on the relevance of psychosocial factors are still needed. The present review, focuses on the impact of living with a CD in adolescence on on quality of life (QoL), health-related quality of life (HRQoL) and psychosocial factors.
Methods
A literature review of articles identified through PubMed, PsycINFO and PsycARTICLES (these last two ones comprise the Ebsco Host platform) and original peer-reviewed research papers, published between 2010 and 2015, with no restrictions regarding the format/source of interventions, randomized controlled trials (RCTs) or types of comparisons were included.
Results
Eighteen papers met the inclusion criteria and contradictory results were found: the majority showed a significantly higher risk of impairment on QoL/HRQoL and psychosocial factors, whereas others reported a significantly lower risk of impairment (highlighting possible protective factors), or no significant differences. Heterogeneity in the assessment procedures and substantial difficulties in considering adolescence as a single and independent age group, were also noted.
Conclusion
The higher risk of impairment and the heterogeneity observed between cohorts, reinforce the need to work towards consensual procedures, which allow for more accurate comparisons among studies. Additionally, it conveys the challenge to find more effective interventions. Furthermore, it is highly suggested to routinely assess HRQoL/psychosocial factors within an individualized framework, to considerer adolescents as a single/independent group, to emphasize potential protective factors, and, to increase youth’s participation in their own adaptation process and in health promotion in general. These are possible future directions that could enable multidisciplinary responses to improve HRQoL and psychosocial care in adolescents with a CD.
Background:
It has been stated that care for children with chronic health conditions tends to focus on condition-specific issues rather than how these children experience their health and everyday life functioning.
Aim:
The aim of this study was to explore children's experiences about a structured assessment of health-related quality of life applied during a patient encounter.
Methods:
Prior to the start of the study, a clinical intervention based on the questionnaire DISABKIDS Chronic Generic Measure (DCGM-37) was performed. A qualitative explorative design was chosen, and 25 children between 10-17 years of age were interviewed after the consultation at four different paediatric outpatient clinics. Data were analysed according to qualitative content analysis.
Results:
The results were twofold: children experienced that the assessment was providing them with insights about their health, which motivated them to make lifestyle changes. When outcomes were discussed and requested, the children felt encouraged.
Conclusions:
The use of an assessment of health-related quality of life may promote insights about health and encourage children with chronic health conditions to discuss their outcomes with healthcare professionals.
Over the past decades, some scientific progress has been made in understanding and treating cancer-related fatigue (CRF). However, three major problems have limited further progress: lack of agreement about measurement, inadequate understanding of the underlying biology, and problems in the conduct of clinical trials for CRF. This commentary reports the recommendations of a National Cancer Institute Clinical Trials Planning Meeting and an ongoing National Cancer Institute working group to address these problems so that high-priority research and clinical trials can be conducted to advance the science of CRF and its treatment. Recommendations to address measurement issues included revising the current case definition to reflect more rigorous criteria, adopting the Patient Reported Outcomes Measurement Information System fatigue scales as standard measures of CRF, and linking legacy measures to the scales. With regard to the biology of CRF, the group identified the need for longitudinal research to examine biobehavioral mechanisms underlying CRF and testing mechanistic hypotheses within the context of intervention research. To address clinical trial issues, recommendations included using only placebo-controlled trial designs. setting eligibility to minimize sample heterogeneity or enable subgroup analysis, establishing a CRF severity threshold for participation in clinical trials, conducting dissemination trials of efficacious interventions (such as exercise), and combining nonpharmacologic and pharmacologic interventions to exploit the potential synergy between these approaches. Accomplishing these goals has the potential to advance the science of CRF and improve the clinical management of this troubling symptom.
The agreement between self-reported and proxy measures of health status in ill children is not well established. This study aimed to quantify the variation in health-related quality of life (HRQOL) derived from young patients and their carers using different instruments.
A hospital-based cross-sectional survey was conducted between August 2010 and March 2011. Children with meningitis, bacteremia, pneumonia, acute otitis media, hearing loss, chronic lung disease, epilepsy, mild mental retardation, severe mental retardation, and mental retardation combined with epilepsy, aged between five to 14 years in seven tertiary hospitals were selected for participation in this study. The Health Utilities Index Mark 2 (HUI2), and Mark 3 (HUI3), and the EuroQoL Descriptive System (EQ-5D) and Visual Analogue Scale (EQ-VAS) were applied to both paediatric patients (self-assessment) and caregivers (proxy-assessment).
The EQ-5D scores were lowest for acute conditions such as meningitis, bacteremia, and pneumonia, whereas the HUI3 scores were lowest for most chronic conditions such as hearing loss and severe mental retardation. Comparing patient and proxy scores (n = 74), the EQ-5D exhibited high correlation (r = 0.77) while in the HUI2 and HUI3 patient and caregiver scores were moderately correlated (r = 0.58 and 0.67 respectively). The mean difference between self and proxy-assessment using the HUI2, HUI3, EQ-5D and EQ-VAS scores were 0.03, 0.05, -0.03 and -0.02, respectively. In hearing-impaired and chronic lung patients the self-rated HRQOL differed significantly from their caregivers.
The use of caregivers as proxies for measuring HRQOL in young patients affected by pneumococcal infection and its sequelae should be employed with caution. Given the high correlation between instruments, each of the HRQOL instruments appears acceptable apart from the EQ-VAS which exhibited low correlation with the others.
To systematically review the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent-child agreement.
Literature searches used to identify studies which evaluated parent-child agreement for child HRQL measures.
Nineteen studies were identified, including four HRQL instruments. The Pediatric Quality of Life Inventory (PedsQL) was most commonly used. Differences in parent-child agreement were noted between domains for different measures. The impact of child and parent characteristics were not consistently considered; however parents of children in a nonclinical sample tended to report higher child HRQL scores than children themselves, while parents of children with health conditions tended to underestimate child HRQL.
Despite increasing numbers of studies considering children's HRQL, information about variables contributing to parent-child agreement levels remains limited. Authors need to consistently provide evidence for reliability and validity of measures, and design studies to systematically investigate variables that impact on levels of parent-child agreement.
To fill gaps in crucial data needed for health and educational planning, we determined the prevalence of developmental disabilities in US children and in selected populations for a recent 12-year period.
We used data on children aged 3 to 17 years from the 1997-2008 National Health Interview Surveys, which are ongoing nationally representative samples of US households. Parent-reported diagnoses of the following were included: attention deficit hyperactivity disorder; intellectual disability; cerebral palsy; autism; seizures; stuttering or stammering; moderate to profound hearing loss; blindness; learning disorders; and/or other developmental delays.
Boys had a higher prevalence overall and for a number of select disabilities compared with girls. Hispanic children had the lowest prevalence for a number of disabilities compared with non-Hispanic white and black children. Low income and public health insurance were associated with a higher prevalence of many disabilities. Prevalence of any developmental disability increased from 12.84% to 15.04% over 12 years. Autism, attention deficit hyperactivity disorder, and other developmental delays increased, whereas hearing loss showed a significant decline. These trends were found in all of the sociodemographic subgroups, except for autism in non-Hispanic black children.
Developmental disabilities are common and were reported in ~1 in 6 children in the United States in 2006-2008. The number of children with select developmental disabilities (autism, attention deficit hyperactivity disorder, and other developmental delays) has increased, requiring more health and education services. Additional study of the influence of risk-factor shifts, changes in acceptance, and benefits of early services is needed.
Parent/consumer-reported data is valuable and necessary for population-based assessment of many key child health and health care quality measures relevant to both the Children's Health Insurance Program Reauthorization Act (CHIPRA) of 2009 and the Patient Protection and Affordable Care Act of 2010 (ACA).
The aim of this study was to evaluate national and state prevalence of health problems and special health care needs in US children; to estimate health care quality related to adequacy and consistency of insurance coverage, access to specialist, mental health and preventive medical and dental care, developmental screening, and whether children meet criteria for having a medical home, including care coordination and family centeredness; and to assess differences in health and health care quality for children by insurance type, special health care needs status, race/ethnicity, and/or state of residence.
National and state level estimates were derived from the 2007 National Survey of Children's Health (N = 91,642; children aged 0-17 years). Variations between children with public versus private sector health insurance, special health care needs, specific conditions, race/ethnicity, and across states were evaluated using multivariate logistic regression and/or standardized statistical tests.
An estimated 43% of US children (32 million) currently have at least 1 of 20 chronic health conditions assessed, increasing to 54.1% when overweight, obesity, or being at risk for developmental delays are included; 19.2% (14.2 million) have conditions resulting in a special health care need, a 1.6 point increase since 2003. Compared with privately insured children, the prevalence, complexity, and severity of health problems were systematically greater for the 29.1% of all children who are publicly insured children after adjusting for variations in demographic and socioeconomic factors. Forty-five percent of all children in the United States scored positively on a minimal quality composite measure: 1) adequate insurance, 2) preventive care visit, and 3) medical home. A 22.2 point difference existed across states and there were wide variations by health condition (autism, 22.8, to asthma, 39.4). After adjustment for demographic and health status differences, quality of care varied between children with public versus private health insurance on all but the following 3 measures: not receiving needed mental health services, care coordination, and performance on the minimal quality composite. A 4.60 fold (gaps in insurance) to 1.27 fold (preventive dental and medical care visits) difference in quality scores was observed across states. Notable disparities were observed among publicly insured children according to race/ethnicity and across all children by special needs status and household income.
Findings emphasize the importance of health care insurance duration and adequacy, health care access, chronic condition management, and other quality of care goals reflected in the 2009 CHIPRA legislation and the ACA. Despite disparities, similarities for public and privately insured children speak to the pervasive nature of availability, coverage, and access issues for mental health services in the United States, as well as the system-wide problem of care coordination and accessing specialist care for all children. Variations across states in key areas amenable to state policy and program management support cross-state learning and improvement efforts.
Increasingly, clinical, pharmaceutical and translational research studies use patient-reported outcomes as primary and secondary end points. Obtaining this type of information from children themselves is now possible, but effective assessment requires developmentally sensitive conceptual models of child health and an appreciation for the rapid change in children's cognitive capacities. To overcome these barriers, outcomes researchers have capitalized on innovations in modern measurement theory, qualitative methods for instrument development and new computerized technologies to create reliable and valid methods for obtaining self-reported health data among 8-17-year-old children. This article provides a developmentally focused framework for selecting child-report health assessment instruments. Several generic health-related quality of life instruments and the assessment tools developed by the NIH-sponsored Patient-Reported Outcome Measurement Information System network are discussed to exemplify advances in the measurement of children's self-reported health, illness, wellbeing and quality of life.
Background: Recently, the National Institutes of Health Roadmap for Medical Research initiative led a large-scale effort to develop the Patient-Reported Outcomes Measurement Information System (PROMIS). PROMIS's main goal was to develop a set of item banks and computerized adaptive tests for the clinical research community. Asthma, as the most common chronic childhood disease, was chosen for a disease-specific pediatric item bank.
The primary objective of this research is to present the details of the psychometric analyses of the asthma domain items.
Item response theory (IRT) analyses were conducted on a 34-asthma item bank. Test forms containing PROMIS Pediatric Asthma domain items were completed by 622 children ages 8 to 12. Items were subsequently evaluated for local dependence, scale dimensionality, and differential item functioning.
A 17-item pool and an 8-item short form for the new PROMIS Pediatric Asthma Impact Scale (PAIS) were generated using IRT. The recommended 8-item short form contains the item set that provides the maximum test information at the mean (50) on the T-score metric. If more score precision is required, the complete 17-item pool is recommended and may be used in toto or as the basis of a computerized adaptive test (CAT). A shorter test form can also be created and scored on the same scale.
The present study presents the PROMIS Pediatric Asthma Impact Scale (PAIS) developed with IRT, and provides the initial calibration data for the items.
To evaluate how well quality of life is being measured in the medical literature and to offer a new approach to the measurement.
Original English-language articles having the term "quality of life" in their titles were identified from a recent Quality-of-Life Bibliography and from two MEDLINE searches. Articles were eligible for review only if they described or used one or more "quality-of-life" instruments.
Twenty-five articles were randomly selected from each of the three data sources.
Each article was reviewed for its compliance with two sets of criteria having several components, which are cited under "Data Synthesis."
(1) Investigators conceptually defined quality of life in only 11 (15%) of the 75 articles; identified the targeted domains in only 35 (47%); gave reasons for selecting the chosen quality-of-life instruments in only 27 (36%); and aggregated their results into a composite quality-of-life score in only 27 (38%) of 71 eligible articles. (2) No article distinguished "overall" quality of life from health-related quality of life; patients were invited to give their own separate rating for quality of life in only 13 articles (17%); and among 71 eligible articles, patients were asked to supplement the stipulated items with personal responses in only nine (13%) and to rate the importance of individual items in only six (8.5%).
Because quality of life is a uniquely personal perception, denoting the way that individual patients feel about their health status and/or nonmedical aspects of their lives, most measurements of quality of life in the medical literature seem to aim at the wrong target. Quality of life can be suitably measured only by determining the opinions of patients and by supplementing (or replacing) the instruments developed by "experts."
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.
Changes in the prevalence of chronic health conditions in childhood have considerable societal consequences for health care planning and for employment. To obtain valid and reliable estimates of the prevalence of chronic health conditions, a clear definition is needed.
To present an overview of all definitions and operationalizations that have been applied to measure the prevalence of chronic health conditions in childhood.
PubMed and the Web of Science were searched for articles published up to December 2006. Also, references were searched by hand for related articles.
Non-English- and non-Dutch-language articles were excluded. Of 7252 articles found, 64 articles that stated a conceptual definition and/or operationalization of chronic health conditions in children (aged 0-18 years) were included.
Data on the (1) definition; (2) operationalization in terms of source of information, method of information retrieval, and study population; and (3) resulting prevalence rate were extracted by 2 independent reviewers.
A large range of definitions were in use, of which 4 were cited by many authors. Various operationalizations of the concepts that were measured were identified. Chronic health conditions in childhood prevalence estimates ranged from 0.22% to 44%, depending on these operationalizations.
The wide variability in reported prevalence rates of chronic health conditions in childhood can be explained by considerable diversity in the concepts and operationalizations used. International consensus about the conceptual definition of chronic health conditions in childhood is needed.
Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The objectives of this study were to compare generic HRQOL across ten chronic disease clusters and 33 disease categories/severities from the perspectives of patients and parents. Comparisons were also benchmarked with healthy children data.
The analyses were based on over 2,500 pediatric patients from 10 physician-diagnosed disease clusters and 33 disease categories/severities and over 9,500 healthy children utilizing the PedsQL 4.0 Generic Core Scales. Patients were recruited from general pediatric clinics, subspecialty clinics, and hospitals.
Pediatric patients with diabetes, gastrointestinal conditions, cardiac conditions, asthma, obesity, end stage renal disease, psychiatric disorders, cancer, rheumatologic conditions, and cerebral palsy self-reported progressively more impaired overall HRQOL than healthy children, respectively, with medium to large effect sizes. Patients with cerebral palsy self-reported the most impaired HRQOL, while patients with diabetes self-reported the best HRQOL. Parent proxy-reports generally paralleled patient self-report, with several notable differences.
The results demonstrate differential effects of pediatric chronic conditions on patient HRQOL across diseases clusters, categories, and severities utilizing the PedsQL 4.0 Generic Core Scales from the perspectives of pediatric patients and parents. The data contained within this study represents a larger and more diverse population of pediatric patients with chronic conditions than previously reported in the extant literature. The findings contribute important information on the differential effects of pediatric chronic conditions on generic HRQOL from the perspectives of children and parents utilizing the PedsQL 4.0 Generic Core Scales. These findings with the PedsQL have clinical implications for the healthcare services provided for children with chronic health conditions. Given the degree of reported impairment based on PedsQL scores across different pediatric chronic conditions, the need for more efficacious targeted treatments for those pediatric patients with more severely impaired HRQOL is clearly and urgently indicated.
We describe the triangulation of qualitative and quantitative research methods used to develop and test the Adolescent Resilience Model (ARM), The differences in meaning-based and function-based health-related quality of life (HRQL) are discussed, and method triangulation is presented as a means of developing models of HRQL that represent the perspectives of the adolescent and family. Qualitative methods of phenomenology, simultaneous concept analysis, focus groups and thematic analysis were used to generate the ARM. Quantitative instrumentation and structural equation model development and testing were used to evaluate the ARM. A decision-malting process for combining qualitative and quantitative research, so that both approaches are equally valued and used, is also presented. Int. J, Cancer Suppl, 12:125-131, 1999, (C) 1999 Wiley-Liss, Inc.
Objective.
—To evaluate how well quality of life is being measured in the medical literature and to offer a new approach to the measurement.Data Sources.
—Original English-language articles having the term "quality of life" in their titles were identified from a recent Quality-of-Life Bibliography and from two MEDLINE searches. Articles were eligible for review only if they described or used one or more "quality-of-life" instruments.Study Selection.
—Twenty-five articles were randomly selected from each of the three data sources.Data Extraction.
—Each article was reviewed for its compliance with two sets of criteria having several components, which are cited under "Data Synthesis."Data Synthesis.
—(1) Investigators conceptually defined quality of life in only 11 (15%) of the 75 articles; identified the targeted domains in only 35 (47%); gave reasons for selecting the chosen quality-of-life instruments in only 27 (36%); and aggregated their results into a composite quality-of-life score in only 27 (38%) of 71 eligible articles. (2) No article distinguished "overall" quality of life from health-related quality of life; patients were invited to give their own separate rating for quality of life in only 13 articles (17%); and among 71 eligible articles, patients were asked to supplement the stipulated items with personal responses in only nine (13%) and to rate the importance of individual items in only six (8.5%).Conclusions.
—Because quality of life is a uniquely personal perception, denoting the way that individual patients feel about their health status and/or nonmedical aspects of their lives, most measurements of quality of life in the medical literature seem to aim at the wrong target. Quality of life can be suitably measured only by determining the opinions of patients and by supplementing (or replacing) the instruments developed by "experts."(JAMA. 1994;272:619-626)
Background
Children with cancer experience multiple symptoms due to their disease and as a result of treatment. The purpose of this study was to demonstrate the feasibility and potential utility of using latent profile analysis (LPA), a type of cluster analysis, in children with cancer to identify groups of patients who experience similar levels of symptom severity and impairment of physical function.ProcedureWe analyzed patient-reported symptom and functional data previously collected using the Pediatric Patient Reported Outcomes Measurement Information System (PROMIS). LPA was used to identify and characterize groups of patients who reported similar levels of symptom severity and functional impairment. We then used the multinomial logit model to examine demographic and disease characteristics associated with symptom/function profile membership.ResultsThe analysis included 200 patients in treatment or in survivorship. We identified four symptom/function profiles; children currently receiving cancer treatment and those with at least one other medical problem were more likely to be members of the profile with the highest levels of symptom severity and functional impairment. Gender, age, race/ethnicity, and tumor type were not associated with profile membership.ConclusionsLPA is a cluster research methodology that provides clinically useful results in pediatric oncology patients. Future studies of children with cancer using LPA could potentially lead to development of clinical scoring systems that predict patients' risk of developing more severe symptoms and functional impairments, allowing clinicians, patients, and parents to better anticipate and prevent the multiple symptoms that occur during and after treatment for childhood cancer. Pediatr Blood Cancer © 2014 Wiley Periodicals, Inc.
This descriptive, correlational study examined fatigue and potential biological and behavioral correlates in adolescents and young adults with sickle cell disease. Sixty adolescents and young adults with sickle cell disease completed the Brief Fatigue Inventory, Multidimensional Fatigue Symptom Inventory-Short Form, Patient Reported Outcomes Measurement Information System (PROMIS) fatigue short form and measures of pain, sleep quality, anxiety, depressive mood, stress, disease severity, and quality of life. Blood samples were obtained for hemoglobin and cytokines. Fatigue scores were mostly moderate in severity. Fatigue interfered to a moderate degree with daily activities and correlated significantly with pain, sleep quality, state and trait anxiety, depressive mood, stress, and quality of life. Fatigue was correlated with hemoglobin on the PROMIS measure. Fatigue was not correlated with cytokines or age, nor differed by disease severity. Fatigue was common in these adolescents and young adults, interfered with daily activities such as school, work and exercise, and significantly correlated with several potentially modifiable factors. As life expectancy increases in sickle cell disease, research is needed to test interventions to reduce fatigue.
To determine the extent to which alterations in health-related quality of life (HRQOL) and special healthcare needs are experienced by children born prematurely, compared to those born at term.
A descriptive comparative design was utilized. A total of 96 children (preterm N = 47, term N = 49) completed the PedsQL 4.0 Generic Core Scales 8- to 12-year-old self-report version. Parents of both groups of children completed the PedsQL 4.0 Generic Core Scales parentproxy version, the Children with Special Health Care Needs (CSHCN) Screener, and a demographic data form.
Special healthcare needs were experienced by more than one half of the premature children evaluated. Mean HRQOL scores were significantly different between the children born prematurely and their peers born at term. Parents of both groups reported higher HRQOL scores than their children self-reported.
Given the sustained high rate of premature birth, understanding of current health status of children born prematurely is critical for maternal-child nurses. Advocacy and coordination of care are important to improve the healthcare provided to families of children born prematurely. Future nursing research should incorporate assessment of special healthcare needs and HRQOL of children.
Patient-reported outcomes related to symptoms, function, and quality of life during and following cancer treatment can guide care for pediatric cancer patients. To advance the science of patient-reported outcomes, the National Institutes of Health funded the Patient-Reported Outcomes Measurement Information System (PROMIS).
The objective of this study was to assess feasibility and acceptability of the PROMIS pediatric measures, as defined by enrollment and attrition rates as well as missingness by measure, item, participant, and assessment time point.
Eight- to18-year-olds participated in 2 studies: PROMIS I, a cross-sectional study of children in active cancer treatment or survivorship, and PROMIS II, a longitudinal study with 3 assessment time points for children receiving curative treatment.
PROMIS I (n = 200) and PROMIS II (n = 94) had enrollment rates of 92.5% and 89.7%, respectively. For PROMIS I, measure missingness was acceptable (8% missed any measures) and was not related to other study variables. For PROMIS II, measure missingness was minimal (0.8%), and item-level missingness was relatively low. In general, items that were skipped asked about experiences that participants had not encountered in the past 7 days.
In both studies, the PROMIS instruments demonstrated good feasibility and acceptability among pediatric cancer patients. Overall, we had high enrollment, low attrition, and acceptable rates of measure and item missingness.
Our results demonstrate that PROMIS measures are acceptable to 8- to 18-year-olds in different points of cancer care and feasible for use in pediatric cancer inpatient and outpatient settings.
Compared the view of quality of life (QOL) derived from 2 different conceptual measures of QOL: the Ontario Cancer Institute (OCI) scale and the Quality of Life Scale (QOLS). The OCI scale, a functional living model, focuses on detecting physical and psychological distress and dysfunction. In contrast, the QOLS focuses on the meaning of the experience of illness for the patient, particularly patient beliefs and relationships. 38 cancer patients (aged 29–89 yrs) completed both questionnaires. The QOLS indicated greater dissatisfaction on the pain and depression items, information, and global QOL than did the OCI. No significant correlations between the 2 measures were found for the 3 non-function-specific psychosocial domains of family relationships, information, and social life. The QOLS produced more information on the 3 domains. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Background:
Establishing the ability of children and adolescents with cancer to complete the NIH-sponsored PROMIS pediatric measures electronically and the preliminary validity estimates of the measures (both full item banks and short forms) in pediatric oncology will contribute to our knowledge of the impact of cancer treatment on these young patients.
Procedures:
A total of 203 8- to 17-year olds were administered eight PROMIS pediatric measures in a cross-sectional study design to establish known-group validity. Of the 200 who completed all or most of the items, a slight majority were male (55.5%) and white (54%). Patients were either undergoing treatment for cancer (n = 93) or in survivorship following treatment for cancer (n = 107). Measures were completed using computer interface during an in-person interaction with researchers.
Results:
Only 3 of 203 participants did not complete the PROMIS pediatric measures. As hypothesized, participants in treatment were significantly different (worse) on parent-reported clinical indicators (blood counts, fatigue, and appetite) and on seven self-reported measures (depression, anxiety, peer relationships, pain interference, fatigue, upper extremity function, and mobility) from participants in survivorship. Females reported worse fatigue, anger, and pain interference than males. Worse patient-reported outcomes for patients in active treatment persisted after adjusting for potential confounding variables.
Conclusions:
Children and adolescents in treatment for cancer or in survivorship and ranging from 8 to 17 years of age can complete multiple PROMIS pediatric measures using a computer interface during an outpatient clinic visit or inpatient admission. Findings establish known-group validity for PROMIS pediatric measures in pediatric oncology.
The demand for health care outcomes assessment is increasing, driven by the proliferation of managed care as a form of health care financing. Providers, consumers, and payers can use health care outcomes to improve the efficiency and quality of care, spur performance improvement, and demonstrate accountability. This review introduces health outcomes and focuses on one particular outcome—pediatric health-related quality of life (HRQOL), exemplified by the PedsQL, a brief, practical, reliable, valid, and responsive measure of pediatric HRQOL. HRQOL measurement has the potential, in pediatric clinical practice, to improve assessment, clinical management, and treatment evaluation if practical, conceptual, and empirical challenges are addressed. These issues are discussed and directions for future research are described that would demonstrate the value of HRQOL measurement in pediatric clinical settings.
Health-related quality of life (HRQOL) has been recognized as an important outcome, some contend the most important outcome for children's health care interventions. The PedsQL Measurement Model was designed as a modular approach to measuring pediatric health-related quality of life, developed to integrate the relative merits of generic and disease-specific approaches. We suggest that part of the process of improving the quality of health care includes measuring HRQOL outcomes from the perspective of children and their parents on a routine basis, consistent with a consumer-based health care system approach.
Understanding the impact of illnesses and morbidities experienced by children and adolescents is essential to clinical and population health programme decision making and intervention research. This study sought to: (1) examine the population prevalence of physical and mental health conditions for children and quantify their impact on multiple dimensions of children's health and well-being; and (2) examine the cumulative effect of concurrent conditions.
We conducted a cross-sectional school-based epidemiological study of 5414 children and adolescents aged 5-18 years, and examined parental reports of child health and well-being using the parent-report Child Health Questionnaire (CHQ) PF50 13 scales are scored on a 0-100 pt scale with clinically meaningful differences of five points and the presence of childhood conditions (illnesses and health problems).
Asthma, dental, vision and allergies are the most commonly identified health problems for children and adolescents, followed by attention- and behaviour-related problems (asthma 17.9-23.2%, dental 11.9-22.7%, vision 7.2-14.7%, chronic allergies 8.8-13.9%, attention problems 5.1-13.8% and behaviour problems 5.7-12.0%). As the number of concurrent health problems increase, overall health and well-being decreases substantively with mean differences in CHQ scale scores of 14 points (-7.69 to -21.51) for physical health conditions, and 28 points (-5.15 to -33.81) for mental health conditions.
Children's health and well-being decreases linearly with increasing presence and frequency of health problems. Having three or more conditions concurrently significantly burdens children's health and well-being, particularly for family-related CHQ domains, with a greater burden experienced for mental health conditions than physical health conditions.
Pediatric patients' self-report of health-related quality of life (HRQOL) has emerged as an important patient-based health outcome. A practical, validated generic measure of HRQOL facilitates assessing risk, tracking health status, and measuring treatment outcomes in pediatric populations.
The PedsQL is a brief, standardized, generic assessment instrument that systematically assesses patients' and parents' perceptions of HRQOL in pediatric patients with chronic health conditions using pediatric cancer as an exemplary model. The PedsQL is based on a modular approach to measuring HRQOL and consists of a 15-item core measure of global HRQOL and eight supplemental modules assessing specific symptom or treatment domains. The PedsQL was empirically derived from data collected from 291 pediatric cancer patients and their parents at various stages of treatment.
Both reliability and validity were determined. Cronbach's alpha coefficients for the core measure (alpha = .83 for patient and alpha = .86 for parent) were acceptable for group comparisons. Alphas for the patient self-report modules generally ranged from .70 to .89. Discriminant or clinical validity, using the known-groups approach, was demonstrated for patients on- versus off-treatments. The 11 scales showed small-to-medium positive intercorrelations, supporting the multidimensional measurement model. Further construct validity was demonstrated via a multimethod-multitrait matrix using standardized psychosocial questionnaires.
The results support the PedsQL as a reliable and valid measure of HRQOL. The PedsQL core and modular design makes it flexible enough to be used in a variety of research and clinical applications for pediatric chronic health conditions.
Data from a nationally representative sample of 2630 English children show that the frequency of overweight ranged from 22% at age 6 years to 31% at age 15 years and that of obesity ranged from 10% at age 6 years to 17% at age 15 years.
We describe the triangulation of qualitative and quantitative research methods used to develop and test the Adolescent Resilience Model (ARM). The differences in meaning-based and function-based health-related quality of life (HRQL) are discussed, and method triangulation is presented as a means of developing models of HRQL that represent the perspectives of the adolescent and family. Qualitative methods of phenomenology, simultaneous concept analysis, focus groups and thematic analysis were used to generate the ARM. Quantitative instrumentation and structural equation model development and testing were used to evaluate the ARM. A decision-making process for combining qualitative and quantitative research, so that both approaches are equally valued and used, is also presented. Int. J. Cancer Suppl. 12:125-131, 1999.
The PedsQL (Pediatric Quality of Life Inventory) (Children's Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and adolescents ages 2 to 18. The PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 4.0 Generic Core Scales consist of 23 items applicable for healthy school and community populations, as well as pediatric populations with acute and chronic health conditions.
The 4 PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School) were administered to 963 children and 1,629 parents (1,677 subjects accrued overall) recruited from pediatric health care settings. Item-level and scale-level measurement properties were computed.
Internal consistency reliability for the Total Scale Score (alpha = 0.88 child, 0.90 parent report), Physical Health Summary Score (alpha = 0.80 child, 0.88 parent), and Psychosocial Health Summary Score (alpha = 0.83 child, 0.86 parent) were acceptable for group comparisons. Validity was demonstrated using the known-groups method, correlations with indicators of morbidity and illness burden, and factor analysis. The PedsQL distinguished between healthy children and pediatric patients with acute or chronic health conditions, was related to indicators of morbidity and illness burden, and displayed a factor-derived solution largely consistent with the a priori conceptually-derived scales.
The results demonstrate the reliability and validity of the PedsQL 4.0 Generic Core Scales. The PedsQL 4.0 Generic Core Scales may be applicable in clinical trials, research, clinical practice, school health settings, and community populations.
A systematic review was conducted to determine the relationship between ratings of children's health-related quality of life (HRQoL) made by parents and children. This was investigated in relation to four questions: is agreement greater for some domains (e.g. physical HRQoL) than others?; do parents perceive illness to have a greater impact than their child?; how is agreement affected by child age, gender and illness status?; and is the relationship between proxy ratings affected by the method of data collection? Fourteen studies were identified. Consistent with previous research, there was greater agreement for observable functioning (e.g. physical HRQoL), and less for non-observable functioning (e.g. emotional or social HRQoL). Three studies assessed whether parents perceive the illness to have a greater impact than their child, but no clear conclusions could be drawn given differences in measures used. Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender. All of these results may be dependent on the specific measure of HRQoL employed. There remain strong arguments for obtaining information from both parents and children whenever possible.
This study examined parental knowledge of their children's oral-health-related quality of life (OHRQoL) (Objective 1), and the effects of different analytical techniques to manage 'Don't know' (DK) responses on the validity and reliability of the questionnaire (Objective 2) and the level of agreement between parental and child reports (Objective 3).
The parental (PPQ) and child (CPQ11-14) components of the Child Oral Health Quality of Life Questionnaire were used. Objectives 1 and 2 were addressed in the study that involved 221 parents and Objective 3 in the study that involved 63 pairs of parents and children. Four methods for treating DK responses in the PPQ were tested: listwise deletion, item mean imputation, imputation of the value zero and adjustment of scores to account for items with DK responses.
Respectively, 26 and 11% of the parents gave > or = 3 and 6 > or = DK responses to 33 items comprising the PPQ. DK responses were associated with child's age and clinical condition, and parental gender. The methods of managing DK responses did not have differing effects on the measurement properties of the PPQ and the level of agreement between parents and children.
Some parents have limited knowledge concerning their children's OHRQoL. However, given that parental and child reports are measuring different realities, information provided by parents is useful even if it is incomplete.
We quantify the lasting effects of childhood health and economic circumstances on adult health, employment and socioeconomic status, using data from a birth cohort that has been followed from birth into middle age. Controlling for parental income, education and social class, children who experience poor health have significantly lower educational attainment, poorer health, and lower social status as adults. Childhood health and circumstance appear to operate both through their impact on initial adult health and economic status, and through a continuing direct effect of prenatal and childhood health in middle age. Overall, our findings suggest more attention be paid to health as a potential mechanism through which intergenerational transmission of economic status takes place: cohort members born into poorer families experienced poorer childhood health, lower investments in human capital and poorer health in early adulthood, all of which are associated with lower earnings in middle age-the years in which they themselves become parents.
With an increasing number of paediatric quality of life (QOL) instruments being developed, it is becoming difficult for researchers and clinicians to select the most appropriate instrument. Reviews of QOL instruments tend to report only basic properties of the instruments such as domains and psychometric properties. This paper seeks to appraise critically the conceptual underpinnings of paediatric QOL instruments. A systematic review was conducted to identify QOL instruments for children aged 0 to 12 years, and to examine and compare their conceptual frameworks, definitions employed, and structure. Both generic and condition-specific measures were reviewed. Fourteen generic and 25 condition-specific QOL instruments were identified. Eleven types of definition of QOL and health-related QOL and three theories of QOL were identified. QOL was measured by a variety of domains including emotional, social and physical health, and well-being. Items commonly assessed difficulties, or intensity/frequency of feelings/symptoms, in contrast to positive aspects of life and happiness. The findings highlight the diversity that is apparent in the conceptualization of paediatric QOL and draw attention to the lack of empirical evidence for many of the fundamental assumptions. The impact of the conceptual underpinnings of the instruments on the resulting QOL scores is discussed.
Despite the widespread use of the Maternal and Child Health Bureau definition of children with special health care needs, no published studies have considered the "at-risk" component of the definition. The purpose of this article is to present a conceptual model of risk for special health care needs.
The conceptual model presented here was developed based on a comprehensive review of the literature on the determinants of population health and the etiologic literature for selected representative childhood chronic conditions.
Our conceptual model is built on 5 key pillars derived from the literature. First, determinants of health have been demonstrated to include genetic endowment, the physical and social environment, health-related behaviors, and the health care system. Second, the model recognizes that the relative importance of each of these domains in contributing to the presence of a special health care need is likely to vary across the major chronic conditions experienced by children. Third, these domains can be conceptualized as acting at the child, family, community, or societal level. Fourth, the model recognizes the presence of a complex interplay of causal factors influencing the development of chronic conditions and associated special health care needs. Fifth, the model incorporates a temporal aspect to the development of special health care needs.
The conceptual model presented here represents a starting point for thinking about the risk factors that influence the occurrence and severity of a special health care need. The model incorporates many of the important breakthroughs by social epidemiologists over the past 25 years by including a broad range of genetic, social, and environmental risk factors; multiple pathways by which they operate; a time dimension; the notion of differential susceptibility and resilience; and a multilevel approach to considering risk. Nevertheless, we recognize that the conceptual model represents an oversimplification of reality. The study of risk factors for special health care needs remains largely in its infancy and is ripe for additional development.
Using nationally representative data, we examined biological, medical system, and sociodemographic factors that are associated with health-related quality of life as measured by a multidimensional index that accounts for a wide range of child health domains.
Children aged > or = 6 years (N = 69,031) were drawn from the 2003/2004 National Survey of Children's Health. A random 25% sample was used to create a 12-item index of health-related quality of life with a range of 0 to 100, based on the conceptual framework of the Child Health and Illness Profile. Bivariate and multivariable regression analyses were conducted to identify the unadjusted and independent associations of key biological, medical system, and sociodemographic variables with health-related quality of life.
The index mean was 72.3 (SD: 14.5), median value was 73.7, and range was 11.1 to 99.9. Only 0.2% of children had a score at the ceiling. In multivariable regression analysis, the following variables were independently associated with lower health-related quality of life: biological factors (greater disease burden, severe asthma, and overweight status); medical system factors (unmet medical needs, lack of a regular health care provider, Medicaid insurance, or being uninsured previously during the year); and sociodemographic factors (older age groups, lower family education, single-mother family, having a smoker in the household, black race, and poverty).
Health-related quality of life in the United States is poorest for children and youth in lower socioeconomic status groups, those with access barriers, adolescents compared with children, and individuals with medical conditions. A multidimensional health-related quality-of-life index is an alternative to conventional measures (eg, mortality) for national monitoring of child health.
To critique existing concept analyses of quality of life and develop a definition applicable for young people with chronic illness.
Quality of life is a commonly used phrase but there is no universal definition. Five perspectives of quality of life have been proposed: sociological, economic, psychological, philosophical and ethical. However, health has emerged as an important but distinct perspective. The nursing profession has made a substantial contribution to the understanding of the interrelationship of health and quality of life.
Literature review.
A search on electronic databases to April 2007 was made using the terms 'quality of life' and 'concept analysis'. Papers were included in the review if they used a recognised method of concept analysis and were conducted by nurses. A new concept analysis was then performed specifically focusing on young people's experiences of living with chronic illness.
Eight concept analyses were identified, all of which had limitations. All the concept analyses were based on adult literature so did not take into consideration developmental changes, language level, or young people's construction of health and illness. The new concept analysis found that young people living with chronic illness generally view themselves and their lives in the same way as their healthy peers. While their aspirations are often constrained by illness and treatment the relationship between illness and life cannot be seen in isolation of development.
Previous definitions of quality of life derived from concept analyses with adult populations do not adequately represent the experience of young people with chronic illnesses, but can be made more specific by incorporating important attributes such as developmental stage and the importance of peer group and family.
The current analysis provides a clear definition of quality of life from the health perspective which is specific for use with young people with chronic illness to guide practice and research.
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Impaired healthrelated quality of life in children and adolescents with chronic MCN thanks the following volunteer peer reviewers who reviewed manuscripts during 2014. Their service to the nursing literature helps to make MCN the strong voice it is for evidence-based nursing practice
- J W Varni
- C A Limbers
- T M Burwinkle
Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired healthrelated quality of life in children and adolescents with chronic
MCN thanks the following volunteer peer reviewers
who reviewed manuscripts during 2014.
Their service to the nursing literature helps to make MCN
the strong voice it is for evidence-based nursing practice.