Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality.

INTRODUCTION: Self-report is the gold standard for measuring children's health-related outcomes. Design of such measures is complex and challenging. This review aims to systematically appraise the evidence on recall period, response scale format, mode of administration and approaches needed to enable children and young people < 19 years to participate in valid and reliable self-reporting of their health outcomes. METHOD: PsycInfo, Medline, CINAHL and Embase were searched from 1 January 1990 to 15 March 2020, and citation searching undertaken in Scopus. Articles were included if they were primary research or case reports of ≥ 3 participants reporting the following: recall period, response scale selection, administration modality. Quality was assessed using QualSyst, and results synthesised narratively. This review was conducted and reported according to PRISMA guidelines. RESULTS: 81 of 13,215 retrieved articles met the inclusion criteria. Children < 5 years old cannot validly and reliably self-report health outcomes. Face scales demonstrate better psychometric properties than visual analogue or Likert scales. Computerised and paper scales generally show equivalent construct validity. Children prefer computerised measures. Children ≤ 7 years old think dichotomously so need two response options. Those > 8 years old can reliably use a 3-point scale. CONCLUSION: The results of this review have both clinical and research implications. They can be used to inform appropriate choice of PROM for use with CYP in the clinical setting. We also give eight recommendations for future development of self-reported outcome measures for children and young people.

'I can't tell my child they are dying'. Helping parents have conversations with their child.

This paper explores the challenges of resolving conflicting feelings around talking with a child about their terminal prognosis. When children are left out of such conversations it is usually done with good intent, with a parent wishing to protect their child from anxiety or loss of hope. There is however growing evidence that sensitive, timely, age appropriate information from those with whom children have a good relationship is helpful both for the child and their family. There is no evidence that involving children in sensitive and timely discussions creates significant problems, rather that withholding information may lead to confusion, frustration, distress and anger. The authors discuss ways in which families can be supported to have these significant conversations with their children.

Does referral to specialist paediatric palliative care services reduce hospital admissions in oncology patients at the end of life?

BACKGROUND: Despite advances in the treatment of childhood cancer, some children continue to die from their disease. This study aimed to assess the impact of specialist paediatric palliative care services (SPPCSs) on the number of hospital admissions in children who subsequently died from cancer in Yorkshire, UK. METHODS: An extract of patients aged 0-19 years from the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) diagnosed from 1990 to 2009 were linked to inpatient hospital episodes data and a SPPCS database. Deaths were included if they occurred before 31 August 2011. Differences in hospital admission patterns were assessed using negative binomial regression and presented as incidence rate ratios (IRRs). RESULTS: Of 2508 children on the YSRCCYP, 657 (26%) had died by the censoring date. A total of 211 children had been referred to the local SPPCS, of whom 182 (86%) had subsequently died. Referral to SPPCS was associated with a significant reduction in the rate of planned hospital admissions (IRR=0.60, 95% CI 0.43-0.85). Central nervous system tumours showed significant decreases for all planned and emergency admissions compared with all other diagnostic groups. CONCLUSION: Referral to SPPCS significantly reduced the number of planned hospital admissions for children and young people with cancer before their death, which are often integral to paediatric oncology treatment regimens. Overall, our findings show that SPPCS have a role in reducing hospital admissions during end of life care of paediatric cancer patients with potential personal, social and economic benefits.

Food outlet availability, deprivation and obesity in a multi-ethnic sample of pregnant women in Bradford, UK.

The obesogenic environment model would suggest that increased availability or access to energy dense foods which are high in saturated fat may be related to obesity. The association between food outlet location, deprivation, weight status and ethnicity was analysed using individual level data on a sample of 1198 pregnant women in the UK Born in Bradford cohort using geographic information systems (GIS) methodology. In the non South Asian group 24% were obese as were 17% of the South Asian group (BMI > 30). Food outlet identification methods revealed 886 outlets that were allocated into 5 categories of food shops. More than 95% of all participants lived within 500 m of a fast food outlet. Women in higher areas of deprivation had greater access to fast food outlets and to other forms of food shops. Contrary to hypotheses, there was a negative association between BMI and fast food outlet density in close (250 m) proximity in the South Asian group. Overall, these women had greater access to all food stores including fast food outlets compared to the non South Asian group. The stronger association between area level deprivation and fast food density than with area level deprivation and obesity argues for more detailed accounts of the obesogenic environment that include measures of individual behaviour.

Deoxynivalenol exposure assessment in a cohort of pregnant women from Bradford, UK.

Deoxynivalenol (DON) is a ubiquitous contaminant of cereal crops in temperate regions of the world. It causes growth faltering and immune suppression in animals. Limited information is available on DON exposure in UK subpopulations. The objective of this study was to provide DON exposure assessment in a subset of pregnant women scheduled for an elective caesarean in a large multi-ethnic mother/infant birth cohort from Bradford, UK. Women aged 16-44 years (n = 85) provided a urine sample for DON analysis in the last trimester of pregnancy, and concurrently completed a food-frequency questionnaire (FFQ). The urinary DON biomarker was detected in all measured samples (geometric mean (GM) = 10.3 ng DON mg(-1) creatinine, range = 0.5-116.7 ng mg(-1)). Levels were higher in women classified as South Asian in origin (GM: 15.2 ng mg(-1); 95% CI = 10.7-21.5 ng mg(-1)) compared with non-South Asians (GM = 8.6 ng mg(-1); 95% CI = 6.6-11.8 ng mg(-1)), p = 0.02). Estimated DON intake from FFQ data and typical levels of DON contamination of food suggest that this was mainly due to higher levels of exposure from bread, particularly daily intake of DON from chapattis in South Asians (estimated mean = 2.4 µg day(-1); 95% CI = 1.2, 3.7 µg day(-1)) compared with non-South Asians (estimated mean = 0.2 µg day(-1); 95% CI = 0-0.4 µg day(-1)), p < 0.001. This is the first biomarker demonstration of DON exposure in pregnant women, and several urinary DON levels were the highest ever recorded in any study. A larger survey within this birth cohort is warranted to investigate any potential risk to mothers and their babies, from DON exposure during pregnancy.

Fast food, other food choices and body mass index in teenagers in the United Kingdom (ALSPAC): a structural equation modelling approach.

OBJECTIVE: To assess the association between the consumption of fast food (FF) and body mass index (BMI) of teenagers in a large UK birth cohort. METHODS: A structural equation modelling (SEM) approach was chosen to allow direct statistical testing of a theoretical model. SEM is a combination of confirmatory factor and path analysis, which allows for the inclusion of latent (unmeasured) variables. This approach was used to build two models: the effect of FF outlet visits and food choices and the effect of FF exposure on consumption and BMI. RESULTS: A total of 3620 participants had data for height and weight from the age 13 clinic and the frequency of FF outlet visits, and so were included in these analyses. This SEM model of food choices showed that increased frequency of eating at FF outlets is positively associated with higher consumption of unhealthy foods (ß=0.29, P<0.001) and negatively associated with the consumption of healthy foods (ß=-1.02, P<0.001). The SEM model of FF exposure and BMI showed that higher exposure to FF increases the frequency of visits to FF outlets (ß=0.61, P<0.001), which is associated with higher body mass index standard deviation score (BMISDS; ß=0.08, P<0.001). Deprivation was the largest contributing variable to the exposure (ß=9.2, P<0.001). CONCLUSIONS: The teenagers who ate at FF restaurants consumed more unhealthy foods and were more likely to have higher BMISDS than those teenagers who did not eat frequently at FF restaurants. Teenagers who were exposed to more takeaway foods at home ate more frequently at FF restaurants and eating at FF restaurants was also associated with lower intakes of vegetables and raw fruit in this cohort.

Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom.

AIM: To identify the nature of services for children and young people with progressive neuromuscular disorders (NMD) provided by Children's Hospices in the UK. METHODS: A questionnaire requesting aggregate data on the number of patients with a neuromuscular condition was sent to all children's hospices in the UK, in addition, specific data was collected on services for young people with DMD presenting to a single local hospice. RESULTS: 87% of eligible hospices responded (27/31). 756 young people with an NM condition were being cared for by the hospices. These patients accounted for a mean of 17% of the total hospice population (range 5-35%). The age at which young people were required to leave the children's hospices varied from 18 up to 35 years. 73% of 'visits' were described as 'planned stays'. Although 'end of life care' is provided, few young people with NMD died in a hospice. CONCLUSIONS: Children and young people with NMD form a large proportion of the Children's Hospice's caseload. Many valued services provided by children's hospices are not available through NHS funding. The lack of similar adult based services is a concern as increasing numbers of young people are surviving into adulthood.

Dietary acrylamide intake and risk of breast cancer in the UK women's cohort.

BACKGROUND: No studies to date have demonstrated a clear association with breast cancer risk and dietary exposure to acrylamide. METHODS: A 217-item food frequency questionnaire was used to estimate dietary acrylamide intake in 33,731 women aged 35-69 years from the UK Women's Cohort Study followed up for a median of 11 years. RESULTS: In all, 1084 incident breast cancers occurred during follow-up. There was no evidence of an overall association between acrylamide intake and breast cancer (hazard ratio=1.08 per 10 µg day(-1), 95% CI: 0.98-1.18, P(trend)=0.1). There was a suggestion of a possible weak positive association between dietary acrylamide intake and premenopausal breast cancer after adjustment for potential confounders (hazard ratio=1.2, 95% CI: 1.0-1.3, P(trend)=0.008). There was no suggestion of any association for postmenopausal breast cancer (hazard ratio=1.0, 95% CI: 0.9-1.1, P(trend)=0.99). CONCLUSIONS: There is no evidence of an association between dietary acrylamide intake and breast cancer. A weak association may exist with premenopausal breast cancer, but requires further investigation.