Factor structure of the Quality of Children's Palliative Care Instrument (QCPCI) when complete by parents of children with cancer.

BACKGROUND: Currently available indicators of quality pediatric palliative care tend to focus on care provided during the end-of-life period rather than care provided throughout the disease trajectory. We adapted a previously developed instrument focused on mothers' perspectives on the quality of end-of-life care and assessed its psychometric properties with mothers and fathers of children with cancer at any stage of the illness. METHODS: Four subscales were included in the analysis: Connect with Families, Involve Parents, Share Information Among Health Professionals, Support Siblings. The number of items across the four subscales was reduced from 31 to 15. We conducted confirmatory factor analysis, composite reliability, internal consistency, and tests of correlation between the overall scale and subscale totals and a separate question inquiring about overall quality of care. Measurement invariance between mothers and fathers was assessed. RESULTS: A total of 533 mothers and fathers completed the survey. The four-factor model was confirmed and there were significant correlations between each subscale score and responses to the overall item on care quality. Cronbach's alpha was adequate for the scale as a whole and for each subscale ranging from 0.78 to 0.90. We also found the factor structure, means, and intercepts were similar across mothers and fathers, suggesting the tool can be used by both groups. CONCLUSIONS: There is evidence for a four-factor structure within a new Quality of Children's Palliative Care Instrument (QCPCI) with demonstrated reliability when used with mothers and fathers of children with cancer. Ongoing assessment of the psychometric properties is needed, including testing in additional populations. However, our initial findings suggest that the QCPCI may be a helpful tool for assessing the quality of palliative care for pediatric patients anywhere along the disease trajectory from the perspective of parents.

Systemic corticosteroids for the management of cancer-related breathlessness (dyspnoea) in adults.

BACKGROUND: Dyspnoea is a common symptom in advanced cancer, with a prevalence of up to 70% among patients at end of life. The cause of dyspnoea is often multifactorial, and may cause considerable psychological distress and suffering. Dyspnoea is often undertreated and good symptom control is less frequently achieved in people with dyspnoea than in people with other symptoms of advanced cancer, such as pain and nausea. The exact mechanism of action of corticosteroids in managing dyspnoea is unclear, yet corticosteroids are commonly used in palliative care for a variety of non-specific indications, including pain, nausea, anorexia, fatigue and low mood, despite being associated with a wide range of adverse effects. In view of their widespread use, it is important to seek evidence of the effects of corticosteroids for the management of cancer-related dyspnoea. OBJECTIVES: To assess the effects of systemic corticosteroids for the management of cancer-related breathlessness (dyspnoea) in adults. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, Science Citation Index Web of Science, Latin America and Caribbean Health Sciences (LILACS) and clinical trial registries, from inception to 25 January 2018. SELECTION CRITERIA: We included randomised controlled trials that included adults aged 18 years and above. We included participants with cancer-related dyspnoea when randomised to systemic corticosteroids (at any dose) administered for the relief of cancer-related dyspnoea or any other indication, compared to placebo, standard or alternative treatment. DATA COLLECTION AND ANALYSIS: Five review authors independently assessed trial quality and three extracted data. We used means and standard deviations for each outcome to report the mean difference (MD) with 95% confidence interval (CI). We assessed the risk of bias and quality of evidence using GRADE. We extracted primary outcomes of sensory-perceptual experience of dyspnoea (intensity of dyspnoea), affective distress (quality of dyspnoea) and symptom impact (burden of dyspnoea or impact on function) and secondary outcomes of serious adverse events, participant satisfaction with treatment and participant withdrawal from trial. MAIN RESULTS: Two studies met the inclusion criteria, enrolling 157 participants (37 participants in one study and 120 in the other study), of whom 114 were included in the analyses. The studies compared oral dexamethasone to placebo, followed by an open-label phase in one study. One study lasted seven days, and the duration of the other study was 15 days.We were unable to conduct many of our predetermined analyses due to different agents, dosages, comparators and outcome measures, routes of drug delivery, measurement scales and time points. Subgroup analysis according to type of cancer was not possible.Primary outcomesWe included two studies (114 participants) with data at one week in the meta-analysis for change in dyspnoea intensity/dyspnoea relief from baseline. Corticosteroid therapy with dexamethasone resulted in an MD of lower dyspnoea intensity compared to placebo at one week (MD -0.85 lower dyspnoea (scale 0-10; lower score = less breathlessness), 95% CI -1.73 to 0.03; very low-quality evidence), although we were uncertain as to whether corticosteroids had an important effect on dyspnoea as results were imprecise. We downgraded the quality of evidence by three levels from high to very low due to very serious study limitations and imprecision.One study measured affective distress (quality of dyspnoea) and results were similar between groups (29 participants; very low-quality evidence). We downgraded the quality of the evidence three times for imprecision, inconsistency, and serious study limitations.Both studies assessed symptom impact (burden of dyspnoea or impact on function) (113 participants; very low-quality evidence). In one study, it was unclear whether dexamethasone had an effect on dyspnoea as results were imprecise. The second study showed more improvement for physical well-being scores at days eight and 15 in the dexamethasone group compared with the control group, but there was no evidence of a difference for FACIT social/family, emotional or functional scales. We downgraded the quality of the evidence three times for imprecision, inconsistency, and serious study limitations.Secondary outcomesDue to the lack of homogenous outcome measures and inconsistency in reporting, we could not perform quantitative analysis for any secondary outcomes. In both studies, the frequency of adverse events was similar between groups, and corticosteroids were generally well tolerated. The withdrawal rates for the two studies were 15% and 36%. Reasons for withdrawal included lost to follow-up, participant or carer (or both) refusal, and death due to disease progression. We downgraded the quality of evidence for these secondary outcomes by three levels from high to very low due to serious study limitations, inconsistency and imprecision.Neither study examined participant satisfaction with treatment. AUTHORS' CONCLUSIONS: There are few studies assessing the effects of systemic corticosteroids on cancer-related dyspnoea in adults with cancer. We judged the evidence to be of very low quality that neither supported nor refuted corticosteroid use in this population. Further high-quality studies are needed to determine if corticosteroids are efficacious in this setting.

Evaluating the impact of national education in pediatric palliative care: the Quality of Care Collaborative Australia.

PURPOSE: The Quality of Care Collaborative Australia (QuoCCA) provided pediatric palliative care education across Australia with the aim of improving the quality of services. The education was delivered through a collaboration of six tertiary pediatric palliative care services, through funding for Nurse Educators, Medical Fellows, a National Allied Health Educator, and national project staff. METHODS: Pre- and post-education surveys were completed by participants immediately following the education, and confidence and knowledge were measured along nine domains related to the care of the child and family, including managing a new referral, symptom management, medications, preparing the family, and using local agencies. RESULTS: Education was provided to over 5,500 health and human service professionals in 337 education sessions across Australia between May 2015 and June 2017. Paired pre- and post-surveys were completed by 969 participants and showed a significant improvement in all the domains measured. Those with no experience in caring for children receiving palliative care showed greater improvement following QuoCCA education compared to those with experience, although the latter had higher scores both before and after education. Similarly, those with no previous education showed greater improvement, but those with previous education showed higher scores overall. Participants in full-day and half-day sessions showed greater improvement than those in short day sessions. Thus, the dosage of education in the length of the sessions and prior attendance impacted knowledge and confidence. Topics requested by the participants were analyzed. Educator learnings were that education was more effective when tailored to the needs of the audience, was interactive, and included story-telling, case studies, and parent experiences. CONCLUSION: These results encouraged the continuation of the provision of education to novice and experienced professionals who care for children with a life-limiting condition, leading to higher levels of confidence and knowledge. The learnings from this evaluation will be transferred into the second round of funding for the national QuoCCA education project. The next stage will focus on developing simulation and interactive training, accessible training modules, and videos on a national website.

Paediatric palliative care and intellectual disability-A unique context.

BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. RESULTS: As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. CONCLUSION: A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.