Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure.

BACKGROUND: Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility. METHODS: For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content. RESULTS: The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS). CONCLUSIONS: PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.

Disparities in end-of-life outcomes among advanced cancer patients in Sri Lanka: Results from the APPROACH study.

OBJECTIVE: A Universal Health Coverage goal is to provide access to affordable palliative care to reduce disparities in end-of-life (EOL) outcomes. To assess progress toward this goal in Sri Lanka, our primary aim was to systematically assess differences in patients' physical, psychological, social and spiritual outcomes, and their perceived quality of care by their socioeconomic status (SES). METHODS: As part of the multi-country APPROACH (Asian Patient Perspectives Regarding Oncology Awareness, Care and Health) study, we surveyed 199 patients with a stage IV solid malignant tumor and aged >21 years from the largest government cancer hospital in Sri Lanka. We assessed their physical (physical and functional well-being, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual outcomes and perceived quality of care (physician communication, nursing care, and coordination/responsiveness). RESULTS: Low SES patients reported significantly lower physical and functional well-being, emotional well-being, spiritual well-being including meaning/peace and faith; and significantly higher symptom burden, anxiety and depressive symptoms compared with patients from high SES (p < 0.05 for all outcomes). SIGNIFICANCE OF RESULTS: Results have implications regarding reducing barriers in access to appropriate palliative care and EOL care services to stage IV cancer patients from low SES in Sri Lanka.

Socio-economic inequalities in suffering at the end of life among advanced cancer patients: results from the APPROACH study in five Asian countries.

BACKGROUND: A systematic understanding of socio-economic inequalities in end-of-life (EOL) suffering among advanced cancer patients is required to inform efforts to reduce these inequalities as part of Universal Health Coverage goals. AIMS: To assess inequalities in multiple domains of EOL suffering among advanced cancer patients - physical, functional, psychological, social, and spiritual -, using two socio-economic status (SES) indicators, education and perceived economic status of the household. METHODS: We used cross-sectional data from surveys of stage IV cancer patients (n = 1378) from seven hospitals across five countries (China, Sri Lanka, India, Vietnam and Myanmar). We conducted separate multivariable linear regression models for each EOL suffering domain. We also tested interactions between the two SES indicators and between each SES indicator and patient age. RESULTS: Patients living in low economic status households /with fewer years of education reported greater suffering in several domains. We also found significant interaction effects between economic status of the household and years of education for all EOL suffering outcomes. Age significantly moderated the association between economic status of the household and social suffering and between years of education and psychological, social, and spiritual suffering (p < 0.05 for all). CONCLUSION: Results highlight that SES inequalities in EOL suffering vary depending on the suffering domain, the SES indicator assessed, and by patient age. Greater palliative care resources for patients with low SES may help reduce these inequalities.

Financial difficulties are associated with greater total pain and suffering among patients with advanced cancer: results from the COMPASS study.

BACKGROUND: The Universal Health Coverage goals call for access to affordable palliative care to reduce inequities in "total pain" and suffering. To achieve this, a patient-centred understanding of these inequities is required. AIM: To assess association of total pain and suffering (i.e. physical, psychological, social, and spiritual health outcomes) and perceived health care quality with financial difficulties among stage IV solid malignancy patients. DESIGN: Using baseline data from the COMPASS cohort study, we assessed total pain and suffering including physical (physical and functional well-being, pain, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual (spiritual well-being, hope) outcomes and perceived health care quality (physician communication, nursing care, and coordination/responsiveness). Financial difficulties were scored by assessing patient perception of the extent to which their resources were meeting expenses for their treatments, daily living, and other obligations. We used multivariable linear/logistic regression to test association between financial difficulties and each patient-reported outcome. SETTING/PARTICIPANTS: Six hundred stage IV solid malignancy patients in Singapore. RESULTS: Thirty-five percent reported difficulty in meeting expenses. A higher financial difficulties score was associated with worse physical, psychological, social, spiritual outcomes, and lower perceived quality of health care coordination and responsiveness (i.e. greater total pain and suffering) (all p < 0.05). These associations persisted after adjustment for socio-economic indicators. CONCLUSION: Results identify advanced cancer patients with financial difficulties to be a vulnerable group with greater reported total pain and suffering. A holistic patient-centred approach to care at end-of-life may help meet goals for Universal Health Coverage.

Good end-of-life care: perspectives of middle-aged and older Singaporeans.

CONTEXT: Understanding preferences for end-of-life care is important for planning and improving services that provide such care. However, little is known about the perspective of Singaporeans regarding good end-of-life care. OBJECTIVES: To identify the key components of good end-of-life care as perceived by middle-aged and older Singaporeans (≥50 years). METHODS: Nine focus groups were conducted with a total of 63 participants. Preferences regarding end-of-life care were discussed. Thematic analysis was conducted on the transcribed results of the focus groups. RESULTS: Eight components of good end-of-life care were identified: 1) have physical comfort at the end of life, 2) avoid inappropriate prolongation of the dying process, 3) maintain sensitivity toward religious and spiritual beliefs, 4) avoid burden on the family, 5) avoid expensive care, 6) be cared for by a trustworthy doctor, 7) maintain control over care decisions, and 8) achieve a sense of completion. CONCLUSION: Eight components of good end-of-life care involving the person, family, and health services were identified among middle-aged and older Singaporeans. A focus on better management of pain, training of caregivers and doctors, shared decision making, and availability of affordable care may improve care at the end of life.

Should there be mandatory testing for HIV prior to marriage in India?

The National AIDS Prevention and Control Policy of the government of India states that testing for HIV infection should be voluntary in nature. But from time to time various state governments and the central government have announced their intent of introducing mandatory premarital testing. Though this intent has not yet been translated into action, we present our case against the adoption of such a policy by discussing various social and medical issues. These include the limited population that such a policy would target given the early age of marriage in India; issues related to its implementation considering the low marriage registration rates in India; potential of stigma and discrimination associated with it; issues with defining boundaries and the role of the state; limitations related to the HIV test itself in context of the policy, including the window period and the positive predictive value of the test; its limited impact in population groups at a high risk for HIV infection; its limited role in changing unsafe behaviours; its limited potential to enhance the empowerment of women; its conflict with existing human rights; and the adverse experience of other countries with a similar policy.