Quality of life in children with advanced cancer: a report from the PediQUEST study

CONTEXT: Modifiable factors of health-related quality of life (HRQOL) are poorly described among children with advanced cancer. Symptom distress may be an important factor for intervention. OBJECTIVES: We aimed to describe patient-reported HRQOL and its relationship to symptom distress. METHODS: Prospective, longitudinal data from the multicenter Pediatric Quality of Life and Symptoms Technology study included primarily patient-reported symptom distress and HRQOL, measured at most weekly with the Memorial Symptoms Assessment Scale and Pediatric Quality of Life inventory, respectively. Associations were evaluated using linear mixed-effects models adjusting for sex, age, cancer type, intervention arm, treatment intensity, and time since disease progression. RESULTS: Of 104 enrolled patients, 49% were female, 89% were white, and median age was 12.6 years. Nine hundred and twenty surveys were completed over nine months of follow-up (84% by patients). The median total Pediatric Quality of Life score was 74 (interquartile range 63-87) and was "poor/fair" (e.g., <70) 38% of the time. "Poor/fair" categories were highest in physical (53%) and school (48%) compared to emotional (24%) and social (16%) subscores. Thirteen of 24 symptoms were independently associated with reductions in overall or domain-specific HRQOL. Patients commonly reported distress from two or more symptoms, corresponding to larger HRQOL score reductions. Neither cancer type, time since progression, treatment intensity, sex, nor age was associated with HRQOL scores in multivariable models. Among 25 children completing surveys during the last 12 weeks of life, 11 distressing symptoms were associated with reductions in HRQOL. CONCLUSION: Symptom distress is strongly associated with HRQOL. Future research should determine whether alleviating distressing symptoms improves HRQOL in children with advanced cancer.

Validity and reliability of the international fItness scale (IFIS) in a population-based sample of schoolchildren in Bogota, Colombia: The FUPRECOL study

The International FItness Scale (IFIS) is a self-reported measure of physical fitness that could easily. This scale has been validated in children, adolescents, and young adults; however, it is unknown whether the IFIS represents a valid and reliable estimate of physical fitness in Latino-American youth population. In the present study we aimed to examine the validity and reliability of the IFIS on a population-based sample of schoolchildren in Bogota, Colombia. Participants were 1,875 Colombian youth (56.2% girls) aged 9 to 17.9 years old. We measured adiposity markers (body fat, waist-to-height ratio, skinfold thicknesses and BMI), blood pressure, lipids profile, fasting glucose, and physical fitness level (self reported and measured). Also, a validated cardiometabolic risk index was used. An age- and sex-matched sample of 229 Schoolchildren originally not included in the study sample fulfilled IFIS twice for reliability purposes. Our data suggest that both measured and self-reported overall fitness were associated inversely with adiposity indicators and a cardiometabolic risk score. Overall, schoolchildren who self-reported “good” and “very good” fitness had better measured fitness than those who reported “very poor” and “poor” fitness (all p<0.001). Test–retest reliability of IFIS items was also good, with an average weighted Kappa of 0.811. Therefore, our findings suggest that self-reported fitness, as assessed by IFIS, is a valid, reliable, and health-related measure, and it can be a good alternative for future use in large studies with Latin-schoolchildren from Colombia.

The oral health of critically ill children

Introduction. In adults, oral health has been shown to worsen during critical illness as well as influence systemic health. There is a paucity of paediatric critical care research in the area of oral health; hence the purpose of the Critically ill Children’s Oral Health (CCOH) study is to describe the status of oral health of critically ill children over time spent in the paediatric intensive care unit (PICU). The study will also examine the relationship between poor oral health and a variety of patient characteristics and PICU therapies and explore the relationship between dysfunctional oral health and PICU related Healthcare-Associated Infections (HAI). Method. An observational study was undertaken at a single tertiary-referral PICU. Oral health was measured using the Oral Assessment Scale (OAS) and culturing oropharyngeal flora. Information was also collected surrounding the use of supportive therapies, clinical characteristics of the children and the occurrence of PICU related HAI. Results. Forty-six participants were consecutively recruited to the CCOH study. Of the participants 63% (n=32) had oral dysfunction while 41% (n=19) demonstrated pathogenic oropharyngeal colonisation during their critical illness. The potential systemic pathogens isolated from the oropharynx and included Candida sp., Staphylococcus aureus, Haemophilus influenzae, Enterococcus sp. and Pseudomonas aeruginosa. The severity of critical illness had a significant positive relationship (p=0.046) with pathogenic and absent colonisation of the oropharynx. Sixty-three percent of PICU-related HAI involved the preceding or simultaneous colonisation of the oropharynx by the causative pathogen. Conclusion. Given the prevalence of poor oral health during childhood critical illness and the subsequent potential systemic consequences, evidence based oral hygiene practices should be developed and validated to guide clinicians when nursing critically ill children.

Validation of the Algase Wandering Scale (Version 2) in a cross cultural sample

This study examined the psychometric properties of an expanded version of the Algase Wandering Scale (Version 2) (AWS-V2) in a cross-cultural sample. A cross-sectional survey design was used. Study subjects were 172 English-speaking persons with dementia (PWD) from long-term care facilities in the USA, Canada, and Australia. Two or more facility staff rated each subject on the AWS-V2. Demographic and cognitive data (MMSE) were also obtained. Staff provided information on their own knowledge of the subject and of dementia. Separate factor analyses on data from two samples of raters each explained greater than 66% of the variance in AWS-V2 scores and validated four (persistent walking, navigational deficit, eloping behavior, and shadowing) of five factors in the original scale. Items added to create the AWS-V2 strengthened the shadowing subscale, failed to improve the routinized walking subscale, and added a factor, attention shifting as compared to the original AWS. Evidence for validity was found in significant correlations and ANOVAs between the AWS-V2 and most subscales with a single item indicator of wandering and with the MMSE. Evidence of reliability was shown by internal consistency of the AWS-V2 (0.87, 0.88) and its subscales (range 0.88 to 0.66), with Kappa for individual items (17 of 27 greater than 0.4), and ANOVAs comparing ratings across rater groups (nurses, nurse aids, and other staff). Analyses support validity and reliability of the AWS-V2 overall and for persistent walking, spatial disorientation, and eloping behavior subscales. The AWS-V2 and its subscales are an appropriate way to measure wandering as conceptualized within the Need-driven Dementia-compromised Behavior Model in studies of English-speaking subjects. Suggestions for further strengthening the scale and for extending its use to clinical applications are described.

Initial psychometric evaluation of the Wayfinding Effectiveness Scale

This study evaluates three versions of the Wayfinding Effectiveness Scale (WES), developed to differentiate problems of wayfinding and wandering behavior of community-residing elders with dementia (EWD), in 266 dyads (EWD and caregiver) recruited from Alzheimer's Association chapters. Factor analyses yield a five-factor solution (explained variance = 62.6%): complex wayfinding goals, analytic strategies, global strategies, simple wayfinding goals, and being stimulus bound. Overall, internal consistencies are high: WES (.94-.95), and subscales are stable across all versions. Testretest reliability is acceptable for the overall WES and two subscales (complex and simple wayfinding goals) for the care recipient current behavior version. Construct validity is supported by the pattern of correlations among subscales and analyses of variance (ANOVAs) showing significant differences among the care recipient (current vs. prior behavior) and caregiver versions overall and for all subscales. Results support the WES as a valid and reliable measure of wayfinding effectiveness in persons with dementia.

The nature of caregiving in children of a parent with multiple sclerosis from multiple sources and the associations between caregiving activities and youth adjustment overtime

This study explored youth caregiving for a parent with multiple sclerosis (MS) from multiple perspectives, and examined associations between caregiving and child negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment outcomes overtime. A total of 88 families participated; 85 parents with MS, 55 partners and 130 children completed questionnaires at Time 1. Child caregiving was assessed by the Youth Activities of Caregiving Scale (YACS). Child and parent questionnaire data were collected at Time 1 and child data were collected 12 months later (Time 2). Factor analysis of the child and parent YACS data replicated the four factors (instrumental, social-emotional, personal-intimate, domestic-household care), all of which were psychometrically sound. The YACS factors were related to parental illness and caregiving context variables that reflected increased caregiving demands. The Time 1 instrumental and social-emotional care domains were associated with poorer Time 2 adjustment, whereas personal-intimate was related to better adjustment and domestic-household care was unrelated to adjustment. Children and their parents exhibited highest agreement on personal-intimate, instrumental and total caregiving, and least on domestic-household and social-emotional care. Findings delineate the key dimensions of young caregiving in MS and the differential links between caregiving activities and youth adjustment.

The Behaviour of Young Novice Drivers Scale (BYNDS)

The contribution of risky behaviour to the increased crash and fatality rates of young novice drivers is recognised in the road safety literature around the world. Exploring such risky driver behaviour has led to the development of tools like the Driver Behaviour Questionnaire (DBQ) to examine driving violations, errors, and lapses. Whilst the DBQ has been utilised in young novice driver research, some items within this tool seem specifically designed for the older, more experienced driver, whilst others appear to asses both behaviour and related motives. Therefore there is a need for a risky behaviour measurement tool that can be utilised with young drivers with a provisional (intermediate) driving licence.

Using developmental theories to inform the design of technology for children

Electronic Blocks are a new programming environment, designed specifically for children aged between three and eight years. As such, the design of the Electronic Block environment is firmly based on principles of developmentally appropriate practices in early childhood education. The Electronic Blocks are physical, stackable blocks that include sensor blocks, action blocks and logic blocks. Evaluation of the Electronic Blocks with both preschool and primary school children shows that the blocks' ease of use and power of engagement have created a compelling tool for the introduction of meaningful technology education in an early childhood setting. The key to the effectiveness of the Electronic Blocks lies in an adherence to theories of development and learning throughout the Electronic Blocks design process.

Confirmatory factor analysis of the Behaviour of Young Novice Drivers Scale (BYNDS)

The greatly increased risk of being killed or injured in a car crash for the young novice driver has been recognised in the road safety and injury prevention literature for decades. Risky driving behaviour has consistently been found to contribute to traffic crashes. Researchers have devised a number of instruments to measure this risky driving behaviour. One tool developed specifically to measure the risky behaviour of young novice drivers is the Behaviour of Young Novice Drivers Scale (BYNDS) (Scott-Parker et al., 2010). The BYNDS consists of 44 items comprising five subscales for transient violations, fixed violations, misjudgement, risky driving exposure, and driving in response to their mood. The factor structure of the BYNDS has not been examined since its development in a matched sample of 476 novice drivers aged 17-25 years. Method: The current research attempted to refine the BYNDS and explore its relationship with the self-reported crash and offence involvement and driving intentions of 390 drivers aged 17-25 years (M = 18.23, SD = 1.58) in Queensland, Australia, during their first six months of independent driving with a Provisional (intermediate) driver’s licence. A confirmatory factor analysis was undertaken examining the fit of the originally proposed BYNDS measurement model. Results: The model was not a good fit to the data. A number of iterations removed items with low factor loadings, resulting in a 36-item revised BYNDS which was a good fit to the data. The revised BYNDS was highly internally consistent. Crashes were associated with fixed violations, risky driving exposure, and misjudgement; offences were moderately associated with risky driving exposure and transient violations; and road-rule compliance intentions were highly associated with transient violations. Conclusions: Applications of the BYNDS in other young novice driver populations will further explore the factor structure of both the original and revised BYNDS. The relationships between BYNDS subscales and self-reported risky behaviour and attitudes can also inform countermeasure development, such as targeting young novice driver non-compliance through enforcement and education initiatives.

Validation of the Educational Stress Scale for Adolescents (ESSA) in Vietnam

Introduction To date, there has been little systematic, quantitative research on the links between academic pressure and mental health among adolescents in Asia, and none in Vietnam. In part, this is because of a lack of appropriate tools to measure this complex phenomenon. This study was to validate the Educational Stress Scale for Adolescents (ESSA), developed and tested in China, with the aim of fostering further research in Asia. Methods A total of 1283 students were recruited in 3 secondary schools and 3 high schools in Ho Chi Minh City, Vietnam. Anonymous, selfreport questionnaires included the ESSA and previously validated measures of mental health. Results Among the 1226 questionnaires available, 54% of respondents were female. The mean age was 15.3 years. Students reported substantial study burden. The ESSA had good internal consistency, and factorial validity and concurrent validity were established. Conclusion The ESSA is a suitable measure for school-based mental health research in Asia.

Postdiagnosis personal growth in an Australian population of parents raising children with developmental disability

Background Parenting a child with a developmental disability presents a variety of long-term physical and emotional challenges. When exploring parent wellbeing, the disability field is dominated by a deficit model despite parents reportedly demonstrating coping and resilience. The current study is embedded in a salutogenic theory (Antonovsky, 1979) and explores the potential for parents of children diagnosed with a developmental disability to undergo positive changes. Method Participants were 6 fathers and 27 mothers who completed measures of distress and posttraumatic growth. Results Compared with a number of other Australian samples, participants reported significantly higher levels of posttraumatic growth. Reports of growth did not negate reports of distress. Results also indicated that constructs of distress and growth were independent. Conclusions The research has important implications for disability support services, reminding providers to be cognisant of the potential for growth, as well as distress, thereby permitting an atmosphere conducive to exploring such outcomes.

Distinguishing between task and contextual performance for nurses : development of a job performance scale

Aim. This paper is a report of a development and validation of a new job performance scale based on an established job performance model. Background. Previous measures of nursing quality are atheoretical and fail to incorporate the complete range of behaviours performed. Thus, an up-to-date measure of job performance is required for assessing nursing quality. Methods. Test construction involved systematic generation of test items using focus groups, a literature review, and an expert review of test items. A pilot study was conducted to determine the multidimensional nature of the taxonomy and its psychometric properties. All data were collected in 2005. Findings. The final version of the nursing performance taxonomy included 41 behaviours across eight dimensions of job performance. Results from preliminary psychometric investigations suggest that the nursing performance scale has good internal consistency, good convergent validity and good criterion validity. Conclusion. The findings give preliminary support for a new job performance scale as a reliable and valid tool for assessing nursing quality. However, further research using a larger sample and nurses from a broader geographical region is required to cross-validate the measure. This scale may be used to guide hospital managers regarding the quality of nursing care within units and to guide future research in the area.

Validation of the dietetic confidence scale

Dietitians have reported a lack of confidence in counselling clients with mental health issues. Standardised tools are needed to evaluate programs aiming to improve confidence. The Dietetic Confidence Scale (DCS) was developed to assess dietitians’perception of their capability about working with clients experiencing depression. Exploratory research revealed a 13-item, two-factor model. Dietetic confidence was associated with: 1) Confidence using the Nutrition Care Process; and 2) Confidence in Advocacy for Self-care and Client-care. This study aimed to validate the DCS using this two-factor model.The DCS was administered to 458 dietitians. Confirmatory factor analysis (CFA) assessed the scale’s psychometric validity. Reliability was measured using Cronbach’s alpha (α) co-efficient. CFA results supported the hypothesised two-factor, 13-item model. The Good Fit Index (GFI = 0.95) indicated a strong fit. Item-factor correlations ranged from r = 0.50 to 0.89. The overall scale and subscales showed good reliability (α = 0.93 to 0.76). This is the first study to validate an instrument that measures dietetic confidence about working with clients experiencing depression. The DCS can be used to measure changes in perceived confidence and identify where further training, mentoring or experience is needed. The findings also suggest that initiatives aimed at building dietitians' confidence about working with clients experiencing depression, should focus on improving client-focused nutrition care, foster advocacy, reflective practice, mentoring and encourage professional support networks. Avenues for future research include further validity and reliability testing to expand the generalisability of results; and modifying the scale for other disease or client populations.

The experiences of teachers teaching children with Down syndrome in the early years of schooling

This innovative collective case study research documented teachers' experiences of teaching children with Down syndrome in the early years of schooling in Australia. Results indicated differences in teachers' conceptualisation of children with Down syndrome as learners and how these variations impacted the way the child was included within the class. Unique to this research was the utilisation of a mind-mapping technique of data collection which effectively captured the individual nature of teachers' experiences, making implicit knowledge explicit through description and interpretation of these experiences. Overall findings indicated that teachers were more likely to include children with Down syndrome into general education classrooms if they operated within a contemporary understanding of disability, had positive support from key stakeholders such as school principals and parents/caregivers, and had access to current information on Down syndrome from professional bodies.