Development of a Parent Version of the Manchester-Minneapolis Quality of Life Survey for use by Parents and Crers 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 PedsQL™ 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 PedsQL™. 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.

IT Adoption and Usage in Non-Profit Organizations: a Cross-generational Case Study

A gulf has tended to develop between the adoption and usage of information technology by different generations, at the heart of which is different ways of experiencing and relating to the world around us. This research idea is currently being developed following data collection and feedback is sought on ways forward to enable impact. The research focuses on information technology in the form of multimedia. Multimedia meaning ‘media’ and ‘content’ that uses a combination of different content forms; or electronically integrated communication engaging all or most of the senses (e.g. graphic art, sound, animation and full-motion video presented by way of computer or other electronic means) mainly through presentational technologies. Although multimedia is not new, some organization’s particularly those in the non-profit sector do not always have the technical or financial resources to support such systems and consequently may struggle to adopt and support its usage amongst different generations. However non-profit organizations are being forced to pay more attention to the way they communicate with markets and the public due to the professionalism of communication everywhere in society. The case study used for this study is a church circuit comprising of 15 churches in the Midlands region of the United Kingdom which was selected due to the diverse age groups catered for within this type of non-profit organization. Participants in the study also had a range of skills, experiences and backgrounds which adds to the diversity of the population studied. Data gathered focused on the attitudes and opinions of the adoption and use of multimedia amongst different age groups. 395 questionnaires were distributed, comprising of 11 opinion questions and 4 demographic questions. 83% of the questionnaires were returned, representing 35% of the total circuit membership. Three people from each of the following age categories were also interviewed: 1920 – 1946 (Matures); 1947-1964 (Baby Boomers); 1965-1982 (Generation X); 1983-2004 (Net Generation). Results of the questionnaire and comments from the interviews were found not to tally with the widespread assumption that the younger generation is attracted by the use of multimedia in comparison to the older generation. The highest proportion of those who said that they gain more from a service enhanced by multimedia was from the Baby Boomers. Comments from interviews suggested that: ‘we need to embrace multimedia if we are to attract and retain the younger generation’; ‘multimedia often helps children to remain focused and clarifies the objective of the service’. However, because the younger generations’ world tends to be dominated by computer technology the questionnaire showed that they are more likely to have higher standards when it comes to the use of multimedia, such as identifying higher levels of equipment failing to work and annoying use of sounds compared to older age groups. In comparison problems experienced with multimedia for the Matures age group had the highest percentage of difficulty with the size of letters; the colour of letters and background and the sound not loud enough which is to be expected. Since every organization is unique any type of multimedia adopted and used should be specific to their needs, its stakeholders and the physical building in order to enhance that uniqueness and its needs. Giving thought to whether the type of multimedia is the best method for communicating the message to the particular audience alongside how technical and financial resources are best used can assist in accommodating different age groups that need to be catered for.

Tubular Urinary Enzymes in Acute Post-infectious Glomerulonephritis

Tubular function of 17 pediatric patients with a mild form of acute post-infectious glomerulonephritis was prospectively evaluated by assessment of the urinary activity of proximal and distal tubule enzymes. Neutral-like endopeptidase (NEP-like) and angiotensin-converting enzyme (ACE) were the proximal tubule enzymes assessed, while prolyl-endopeptidase (PE) and serine-endopeptidase H1 and H2 were the distal tubule enzymes analyzed. Urine was collected at diagnosis (T0) and after 2 (T2) and 6 (T6) months of follow-up. NEP-like enzyme activity (nmol/mg creatinine; median±quartile range) was increased at diagnosis, and this remained stable during the first 6 months (T0 18.30±83.26, T2 17.32±49.56, T6 23.38±107.18). Urinary activity of the other enzymes was as follows: ACE (mU/ml per mg creatinine) T0 0.08±0.16, T2 0.06±0.10, T6 0.18±0.29; PE (nmol/mg creatinine) T0 6.70±84.87, T2 9.55±69.00, T6 13.67±28.70; serine-endopeptidase H1 (nmol/mg creatinine) T0 7.86±26.95, T2 17.17±59.37, T6 18.19± 79.14; and serine-thiol-endopeptidase H2 (nmol/mg creatinine) T0 3.06±21.97, T2 12.06±32.42, T6 16.22± 44.06. Thirty other healthy children matched for age and gender were considered as a control group. This group was assessed once and the results were: NEP-like activity 6.05±10.54, ACE 0.11±0.22, PE 7.10±13.36, H1 5.00±17.30, and H2 6.00±20.16. In conclusion, we observed that NEP-like and H1 enzymes exhibited significant increased urinary activity 6 months after the diagnosis. This increase occurred in spite of the disappearance of clinical symptoms, which occurred 2 months after the diagnosis. We believe that the increase in urinary enzymatic activity could be a manifestation of a silent tubular dysfunction following an episode of acute post-infectious glomerulonephritis.