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.

Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents

Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Results: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Conclusions: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members

Managing Transition from Curative to Palliative: GP and Bereaved Parent Experiences

Background Children with cancer in the UK are treated in regional childhood cancer centres (RCCC). Families and health care professionals can develop close working relationships over the often-long duration of treatment. Cancer still accounts for largest numbers of childhood disease related deaths and as home is commonly the choice of location for palliative and end of life care, the child and family can face transitions both from curative to palliative care and from hospital to home. This paper reports on findings relating to these transitions from the perspectives of parents and family doctors highlighting implications for both hospital and community based health care practitioners. Aims To explore the experiences of bereaved parents and family doctors following the death of a child with cancer in the family home. Methods Ethical approval was sought and obtained. In this qualitative study one-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents were those whose child had received treatment for cancer at a RCCC in the UK and who died at home, the GPs were those involved in the palliative care. Chronological comparative data analysis using grounded theory was completed. Results Cessation of contact with the RCCC when the child receives palliative care at home can be traumatic for parents. Hospital and community based health care professionals need to carefully consider how they establish, maintain and end working relationships with the child and family. Conclusions Findings from this study provide a new perspective to the effective management of transition in paediatric oncology palliative care; managing working relationships. Findings highlight the need for hospital and community based staff to identify and employ strategies that ensure working relationships with families are effectively managed prior to, during and following the child’s transition from curative to palliative care.