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.

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.