Sociodemographic and Medical Determinants of Quality of Life in Long-Term Childhood Acute Lymphoblastic Leukemia Survivors Enrolled in EORTC CLG Studies.

BACKGROUND: due to increasing survival rates in childhood acute lymphoblastic leukemia (ALL), the number of survivors has been expanding. A significant proportion of these survivors can experience long-term emotional and psychosocial problems. However, the exact risk factors remain inconclusive. We investigated potential risk factors for decreased daily life quality and life challenges in long-term childhood ALL survivors enrolled between 1971 and 1998 in EORTC studies. METHODS: self-report questionnaires were collected from 186 survivors (109 females; mean age at diagnosis 5.62 years, range 0.2-14.7; median time since diagnosis of 20.5 years (12.9-41.6)), including the Short-Form Health Survey (SF-12) and Impact of Cancer-Childhood Survivors (IOC-CS). Multivariable linear regression models were used to assess the impact of gender, age at diagnosis, relapse/second neoplasm, National Cancer Institute (NCI) risk group and cranial radiotherapy on 2 subscales of the SF-12 (physical and mental health) and five subscales of the IOC-CS (life challenges, body and health, personal growth, thinking and memory problems and socializing). RESULTS: mental component scores of SF-12 were not significantly associated with any risk factor. Physical component scores were lower in relapsed, irradiated and NCI high-risk patients. Regarding IOC-CS negative impact subscales, life challenges was more negatively impacted by cancer in female, younger (i.e., <6 years) and relapsed patients. Regarding the positive impact scales, personal growth was more positively impacted in relapsed patients, whereas body and health, and socializing, were less positively impacted in these patients, compared to non-relapsed patients. Socializing was more positively impacted in older patients (>6 years). CONCLUSIONS: this study demonstrates that long-term outcomes can be both adverse and positive, depending on the patient's demographic and clinical characteristics. Younger, female, and relapsed patients might encounter more life challenges years after their disease, while physical challenges could occur more often in relapsed and high-risk patients. Finally, the positive effect on socializing in the older patients sheds new light on the importance of peer interactions for this subgroup. Specific individual challenges thus need specialized support for specific subgroups.

Has the NHS 111 urgent care telephone service been a success? Case study and secondary data analysis in England.

OBJECTIVES: To explore the success of the introduction of the National Health Service (NHS) 111 urgent care service and describe service activity in the period 2014-2016. DESIGN: Comparative mixed method case study of five NHS 111 service providers and analysis of national level routine data on activity and service use. SETTINGS AND DATA: Our primary research involved five NHS 111 sites in England. We conducted 356 hours of non-participant observation in NHS 111 call centres and the urgent care centres and, linked to these observations, held 6 focus group interviews with 47 call advisors, clinical and managerial staff. This primary research is augmented by a secondary analysis of routine data about the 44 NHS 111 sites in England contained in the NHS 111 Minimum Data Set made available by NHS England. RESULTS: Opinions vary depending on the criteria used to judge the success of NHS 111. The service has been rolled out across 44 sites. The 111 phone number is operational and the service has replaced its predecessor NHS Direct. This new service has led to changes in who does the work of managing urgent care demand, achieving significant labour substitution. Judged against internal performance criteria, the service appears not to meet some targets such as call answering times, but it has seen a steady increase in use over time. Patients appear largely satisfied with NHS 111, but the view from some stakeholders is more mixed. The impact of NHS 111 on other health services is difficult to assess and cost-effectiveness has not been established. CONCLUSION: The new urgent care service NHS 111 has been brought into use but its success against some key criteria has not been comprehensively proven.

Development and initial validation of a new outcome measure for hospice and palliative care: the St Christopher's Index of Patient Priorities (SKIPP).

OBJECTIVE: To develop and conduct a preliminary psychometric analysis of a hospice and palliative care patient-reported outcome measure to detect patients' perceptions of change in quality of life (QoL) and issues of concern, and views of service benefit. METHODS: Following pilot testing and cognitive interviewing, St Christopher's Index of Patient Priorities (SKIPP) was administered twice to hospice inpatients and homecare patients. QoL was rated 'now', and retrospectively 'before starting hospice care' or 'at the time of the first interview'. Patients nominated and rated progress with main concerns, rated the difference the service was making, and completed palliative care outcome scale. Patients completed SKIPP again within 24 h to measure test-retest reliability. RESULTS: QoL scores 'now' differed significantly from retrospective scores made at same time: QoL increased with hospice care when patients 'looked back' on previous QoL. Four-fifths reported that their first concern had got 'a little'/ 'much' better since initial service contact: this declined subsequently. Four-fifths at both time points said the hospice had made 'a lot of difference' to them. No significant differences were noted between time points on palliative care outcome scale items. Test-retest analyses were prevented by low numbers. CONCLUSIONS: SKIPP can detect patients' perception of change in QoL and main concerns, and the difference patients think the service has made to them. Its design with current and retrospective components addresses response shift and means it can be used for quality improvement or clinical purposes with only one administration, an advantage in frail populations. It is therefore a useful addition to hospice and palliative care patient-reported outcome measures.