Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF).

BACKGROUND: Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. METHODS: This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQLtrade mark quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. RESULTS: A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL-UK (PF)) took part in the study. The internal consistency of all the MMQL-UK (PF) components exceeding the accepted criterion of 0.70 and the construct validity was good with moderate correlations being evident between comparable components of the MMQL-UK (PF) and the proxy PedsQLtrade mark. Discriminant validity was demonstrated with significant differences being identified between parents of healthy children and those with chronic conditions. Intra-class correlations exceeded 0.65 for all MMQL-UK (PF) components demonstrating good reproducibility. Weak to moderate levels of responsiveness were demonstrated for all but social functioning. The MMQL-UK (PF) showed moderate parent-child correlation with the MMQL-UK (CF) for all components. The best correlations were seen for those components measuring the same construct (Pearson's r ranged from 0.31 to 0.61, p < 0.01 for equivalent components). CONCLUSION: The MMQL-UK (PF) showed moderate to good correlations with the MMQL-UK (CF) component scores. The MMQL-UK (PF) will be of use when comparing child and parent/carer perception of the impact of a child's condition on their HRQL or where the child is too ill or young to provide their own report.

Does frequent residential mobility in early years affect the uptake and timeliness of routine immunisations? An anonymised cohort study.

BACKGROUND: There are conflicting findings regarding the impact of residential mobility on immunisation status. Our aim was to determine whether there was any association between residential mobility and take up of immunisations and whether they were delayed in administration. METHODS: We carried out a cohort analysis of children born in Wales, UK. Uptake and time of immunisation were collected electronically. We defined frequent movers as those who had moved: 2 or more times in the period prior to the final scheduled on-time date (4 months) for 5 in 1 vaccinations; and 3 or more times in the period prior to the final scheduled on-time date (12 months) for MMR, pneumococcal and meningitis C vaccinations. We defined immunisations due at 2-4 months delayed if they had not been given by age 1; and those due at 12-13 months as delayed if they had not been given by age 2. RESULTS: Uptake rates of routine immunisations and whether they were given within the specified timeframe were high for both groups. There was no increased risk (odds ratios (95% confidence intervals) between frequent movers compared to non-movers for the uptake of: primary MMR 1.08 (0.88-1.32); booster Meningitis C 1.65 (0.93-2.92); booster pneumococcal 1.60 (0.59-4.31); primary 5 in 1 1.28 (0.92-1.78); and timeliness: primary MMR 0.92 (0.79-1.07); booster Meningitis C 1.26 (0.77-2.07); booster pneumococcal 1.69 (0.23-12.14); and primary 5 in 1 1.04 (0.88-1.23). DISCUSSION: Findings suggest that children who move home frequently are not adversely affected in terms of the uptake of immunisations and whether they were given within a specified timeframe. Both were high and may reflect proactive behaviour in the primary healthcare setting to meet Government coverage rates for immunisation.

Residential Moving and Preventable Hospitalizations.

OBJECTIVES: To investigate the association between moving home in the first year of life and subsequent emergency admissions for potentially preventable hospitalizations. METHODS: We undertook a cohort analysis of linked anonymized data on 237 842 children in the Welsh Electronic Cohort for Children. We included children born in Wales between April 1, 1999 and December 31, 2008. The exposure was the number of residential moves from birth up to 1 year. The main outcome was emergency admissions for potentially preventable hospitalizations (PPH) between the age of 1 and 5 years. RESULTS: After adjustment for confounders, we identified that moving home frequently in the first year of life was associated with an increased risk of emergency PPH between the ages of 1 and 5 when compared with not moving. We found significant differences associated with ≥2 moves for the following: ear, nose, and throat infections (incidence risk ratio [IRR], 1.44; 95% confidence interval [CI], 1.29-1.61); convulsions/epilepsy (IRR, 1.58; 95% CI, 1.23-2.04); injuries (IRR, 1.33; 95% CI, 1.18-1.51); dehydration/gastroenteritis (IRR, 1.51; 95% CI, 1.21-1.88); asthma (IRR, 1.61; 95% CI, 1.19-2.16); influenza/pneumonia (IRR, 1.15; 95% CI, 1.00-1.32); and dental conditions (IRR, 1.30; 95% CI, 1.03-1.64) for ≥1 moves. CONCLUSIONS: Children who move home in the first year of life are at substantially increased risk of emergency admissions for PPH in early childhood. Additional research that focuses on enhancing health and social support services for highly mobile families, educating parents about safety risks, and improving housing quality is warranted.

Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales.

BACKGROUND: Health related quality of life (HRQL) has been recognised as an important paediatric outcome measurement. One of the more promising measures to emerge in recent years is the Pediatric Quality Of Life Inventory (PedsQL), developed in the US. Advantages of the PedsQL include brevity, availability of age appropriate versions and parallel forms for child and parent. This study developed a UK-English version of PedsQL generic module and assessed its performance in a group of UK children and their parents. METHODS: PedsQL was translated to UK-English. The psychometric properties of the UK version were then tested following administration to 1399 children and 970 of their parents. The sample included healthy children, children diagnosed with asthma, diabetes or inflammatory bowel disease and children in remission from cancer. RESULTS: Psychometric properties were similar to those reported for the original PedsQL. Internal reliability exceeded 0.70 for all proxy and self-report sub-scales. Discriminant validity was established for proxy and self-report with higher HRQL being reported for healthy children than those with health problems. Sex differences were noted on the emotional functioning subscale, with females reporting lower HRQL than males. Proxy and self-report correlation was higher for children with health problems than for healthy children. CONCLUSION: The UK-English version of PedsQL performed as well as the original PedsQL and is recommended for assessment of paediatric HRQL in the UK.

Do children who move home and school frequently have poorer educational outcomes in their early years at school? An anonymised cohort study.

Frequent mobility has been linked to poorer educational attainment. We investigated the association between moving home and moving school frequently and the early childhood formal educational achievement. We carried out a cohort analysis of 121,422 children with anonymised linked records. Our exposure measures were: 1) the number of residential moves registered with a health care provider, and 2) number of school moves. Our outcome was the formal educational assessment at age 6-7. Binary regression modeling was used to examine residential moves within the three time periods: 0 - <1 year; 1 - <4 years and 4 - <6 years. School moves were examined from age 4 to age 6. We adjusted for demographics, residential moves at different times, school moves and birth related variables. Children who moved home frequently were more likely not to achieve in formal assessments compared with children not moving. Adjusted odds ratios were significant for 3 or more moves within the time period 1 -<4 years and for any number of residential moves within the time period 4-<6 years. There was a dose response relationship, with increased odds ratios with increased frequency of residential moves (2 or more moves at 4-<6 years, adjusted odds ratio 1.16 (1.03, 1.29). The most marked effect was seen with frequent school moves where 2 or more moves resulted in an adjusted odds ratio of 2.33 (1.82, 2.98). This is the first study to examine the relationship between residential and school moves in early childhood and the effect on educational attainment. Children experiencing frequent mobility may be disadvantaged and should be closely monitored. Additional educational support services should be afforded to children, particularly those who frequently change school, in order to help them achieve the expected educational standards.

Randomized comparison of long-term desmopressin and alarm treatment for bedwetting.

OBJECTIVE: To compare the efficacy of long-term primary nocturnal enuresis (PNE) treatment using desmopressin versus enuresis alarm. MATERIALS AND METHODS: A 6-month randomized trial was performed with patients from 29 enuresis clinics: 251 patients ≥ 5 years in age with severe PNE (mean 5.5-5.6 wet nights/week) were randomized to desmopressin (0.2-0.4 mg daily) or alarm. Efficacy was assessed by percentage reduction in mean number of wet nights/week; patients achieving dryness, mean initial duration of sleep and compliance were evaluated. Efficacy analyses were performed using the intent-to-treat population (all patients) and excluding patients who withdrew; 12-month follow-up data were collected. RESULTS: Data could not be evaluated for the 32% of alarm patients and 7% of desmopressin patients who withdrew early. In intent-to-treat analyses, a similar proportion of patients across groups showed a ≥ 50% reduction in wet nights/week (desmopressin: 37.5%, alarm: 32.2%) and achieved dryness (desmopressin: 32%, alarm: 37%). Compliance was higher with desmopressin: 95-98% of patients took >75% of tablets; 50-78% used alarm >75% of nights. Initial sleep duration was 1.02 h longer at the end of treatment with desmopressin (95% CI: 0.045, 1.99). CONCLUSION: Desmopressin and alarm demonstrated comparable efficacy in the treatment of PNE. Withdrawal from the alarm group was high, indicating the importance of considering family motivation before selecting treatment, for optimal outcome.

Immunisation status in the public care system: a comparative study.

Children in public care have poor health outcomes despite statutory health assessments. Incomplete immunisation of children entering the care system has been reported. Does this health disadvantage persist for those established in the care system? The immunisation status of 119 children in public care for at least 6 months was compared to that noted in 119 age and sex matched children living in their own homes. Children in public care were significantly less likely to have received immunisations against diphtheria, tetanus, pertussis and polio, than the comparison group. This represents a persisting health disadvantage, which requires remedial action.