Background:The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care.Aim:To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties.Design:A systematic literature review and analysis of psychometric properties.Data sources:PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed.Results:From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly.Conclusion:There is currently no ‘ideal’ outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field.

ObjectiveTo shed light on experiences of patients with cancer in London National Health Service (NHS) trusts that may not be fully captured in national survey data, to inform improvement action plans by these trusts.DesignFramework analysis of free-text data from 2012/2013 National Cancer Patient Experience Survey (NCPES) from the 2 London Integrated Cancer Systems.Setting and participantsPatients with a cancer diagnosis treated by the NHS across 27 trusts in London.Main outcome measuresFree-text data received from patients categorised into what patients found good about their cancer care and what could be improved.MethodsUsing Framework analysis, a thematic framework was created for 15 403 comments from over 6500 patients. Themes were identified across the London data set, by tumour group and by trust.ResultsTwo-thirds of free-text comments from patients in London were positive and one-third of those related to the good quality of care those patients received. However, the majority of comments for improvement related to quality of care, with a focus on poor care, poor communication and waiting times in outpatient departments. Additionally, 577 patients (9% of those who returned free-text data in London) commented on issues pertaining to the questionnaire itself. Some patients who experienced care from multiple trusts were unclear on how to complete the questionnaire for the single trust whose care they were asked to comment on, others said the questions did not fit their experiences.ConclusionsNCPES free-text analysis can shed light on the experiences of patients that closed questions might not reveal. It further indicates that there are issues with the survey itself, in terms of ambiguities in the questionnaire and difficulties in identifying patients within specific trusts. Both of these issues have the potential to contribute to knowledge and understanding of the uses and limitations of free-text data in improving cancer services.

Objectives In 2009 more women attended cervical screening in England and Wales than in the previous year. Described as the 'Jade Goody Effect' this was attributed to the death from cervical cancer of a UK celebrity. The present study aimed to establish which sociodemographic characteristics were associated with being influenced by Jade Goody's story. Methods Data were collected as part of a Taylor Nelson Sofres (TNS) omnibus survey using random location sampling. Women in England aged 26 -64 years were asked to report whether they felt Jade Goody's story had influenced their decisions about cervical screening over the 18 months between her death and the time of the survey. Results Data from 890 participants was included in analysis. Over a third of women felt Goody's story had influenced their decisions about cervical screening (40%). Younger women (aged 26 -35 years) were more likely to have been influenced by Goody's story than older women (56-64 year olds). There was also evidence of socioeconomic variation with women from lower socioeconomic class groups and those with fewer educational qualifications more likely to say they had been influenced by Goody's story. Conclusions The 'Jade Goody Effect', as acknowledged by women themselves, was more pronounced among young women and influenced screening decisions more markedly among those from lower socioeconomic backgrounds. Narrative communication may be an effective way to encourage attendance at cervical cancer screening and reach groups of the population that are difficult to reach using traditional intervention methods.

Findings suggest that the Female Sexual Function Index (FSFI) remains the most robust sexual morbidity outcome measure, for research or clinical use, in sexually active women treated for cervical or endometrial cancer. Development of an instrument that measures sexual dysfunction in women who are infrequently/not sexually active due to treatment consequences is still required to identify women in need of sexual rehabilitation.

ObjectiveThis study developed and piloted an educational intervention to support healthcare professionals (HCPs) to provide supportive care for families when a parent has cancer.MethodsProgramme development followed the Medical Research Council (MRC) framework, beginning with examination of theory and research, and consultation with experts. The programme content incorporated attachment theory, child development and family systems theory. It was piloted thrice with HCPs from a cancer centre. The evaluation involved a questionnaire, comprising open-ended questions, completed before and after the programme. Data from the questionnaire were analysed using framework analysis.Results31 HCPs from varying disciplines participated. The programme was evaluated positively by participants. Before the programme, participants had significant concerns about their professional competence, which included: managing their own emotions; a perceived sensitivity around raising child and family matters with patients and a lack of specialist experience, skills and knowledge. After completing the programme, participants reported greater understanding and knowledge, increased confidence to approach patients about family matters, greater skill to initiate conversations and explore family concerns and guiding parent–child communication according to the child's level of understanding, and an increased engagement and resilience for caring for parents with cancer.Significance of the resultsSupporting HCPs to provide family-centred care is likely to reduce psychological difficulties in families where a parent has cancer. Further work is planned to disseminate the programme, evaluate the transfer of skills into practice, assess how HCPs manage the emotional demands of providing supportive care over time, and consider on-going professional support for HCPs.

The majority of research ideas are proposed by clinicians or scientists and little is currently known about which areas of research patients feel are important. We performed a 4 week pilot patient survey at the Royal Marsden (a specialist cancer centre) to investigate patients’ views on priorities for cancer research. A total of 780 patients completed the survey and the top research priorities were identified as: detection and prevention of cancer, scientific understanding, curative treatment and personalised treatment. The top research priorities were remarkably consistent across age, gender and a variety of tumour types. We believe that patients’ views should be considered alongside those of clinicians and researchers when devising research proposals and strategies.

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