Arun Ghoshal

Background: Timely integration of pediatric palliative care (PPC) is recommended alongside disease-directed treatment, yet referrals remain late and inconsistent. Structured screening and provider education may address clinician-level barriers, but evidence from pediatric oncology in low- and middle-income settings is limited. This study evaluated whether an educational intervention for pediatric oncologists was associated with changes in PPC referral practices for children with haematological malignancies screened using the Paediatric Palliative Screening Scale (PaPaS). Methods: We conducted a single-centre quasi-experimental study using a separate-samples pretest–posttest design. Children aged < 18 years with haematological malignancies were screened during August 2022, followed by a multimodal educational intervention for pediatric oncologists in September 2022 and post-intervention screening in October 2022. PaPaS v3 scores ≥ 15 indicated referral eligibility. The primary outcome was documented PPC referral among eligible children. Referral proportions were compared using a two-sided Fisher’s exact test. Results: Among 105 enrolled children (55 pre-intervention; 50 post-intervention), PaPaS eligibility was similar between periods (34.5% vs. 34.0%). Referral among eligible children increased from 15.8% (3/19) before the intervention to 64.7% (11/17) after the intervention (Fisher’s exact p = 0.005; odds ratio 9.78, 95% CI 2.01–47.68; relative risk 4.10, 95% CI 1.37–12.26; absolute risk difference 48.9% points, 95% CI 20.9–76.9). Total PaPaS scores did not differ significantly. Domain 4, Preferences of health professionals, increased, although this clinician-rated domain is susceptible to assessment bias. Conclusion: The educational intervention was associated with a higher frequency of PPC referrals among clinically eligible pediatric oncology patients, despite a stable assessed need. These findings suggest that clinician-related factors may contribute to under-referral and that educational strategies may help address this implementation gap. Larger studies with independent PaPaS assessment, extended follow-up, and evaluation of sustainability are needed. Clinical trial registration: - CTRI/2022/07/044157; registered on 1 July 2022.

Background: People with advanced or terminal illnesses may experience critical deterioration for which admission to intensive care, escalation of life-sustaining treatment, or continuation of invasive treatment offers limited clinically meaningful benefit or is inconsistent with their values and goals. Indian intensive care units (ICUs) vary substantially in governance, resources, sociocultural context, and access to specialist palliative care. Consequently, evidence-based end-of-life and palliative care practices are implemented inconsistently. This study was designed to co-develop, implement, and evaluate a context-sensitive care package for people with advanced or terminal illnesses who require ICU support. Methods: Implementing a Multifaceted, Comprehensive, Appropriate Care Package for People with Advanced and Terminal Illnesses Needing Intensive Care Support in India (MATHRU) was designed as a five-year, multicentre, multiphase, sequential mixed-methods implementation study. The intervention—the Multifaceted, Comprehensive, Appropriate Care Package (MCACP)—comprised seven domains: prognostication and recognition; interdisciplinary review and consensus; communication; shared decision-making; comprehensive anticipatory care planning; care delivery; and care evaluation and learning. Phase 1 used evidence synthesis, a two-step Delphi process, Nominal Group Technique, human-centred co-design, and usability testing to develop and specify the intervention. Phase 2 piloted MCACP in one open and one closed ICU. Phases 3 and 4 were designed to evaluate implementation across four ICUs with established palliative care access and four without, using mixed-methods process evaluation and a quasi-experimental pre–post effectiveness design, respectively. Phase 5 was designed to develop a national technical resource hub and a minimum viable set of interventions. The study was informed by Medical Research Council guidance for complex interventions, the Consolidated Framework for Implementation Research, Normalization Process Theory, and the Implementation Research Logic Model. Implementation outcomes included feasibility, acceptability, fidelity, reach, workflow compatibility and normalisation. Patient, family, and system outcomes included ICU Quality of Dying and Death, Family Satisfaction in the ICU, care process indicators, resource utilisation, and costs. The planned effectiveness sample was 150 patient episodes per ICU in each pre- and post-implementation period. At the time of revision, Phases 1 and 2 were ongoing, whereas Phases 3 and 4 had not commenced. Discussion: MATHRU was designed to evaluate whether a defined but adaptable appropriate-care package can be integrated across heterogeneous Indian ICUs. Its non-randomised design was recognised as susceptible to secular trends, regression to the mean, and residual confounding; the findings were therefore intended to be interpreted using covariate-adjusted analyses alongside data on context, fidelity, reach, and implementation mechanisms. Trial registration: Clinical Trials Registry–India: CTRI/2025/06/107155. Prospectively registered on 11 June 2025; protocol version 1.0.

Background: In intensive care units (ICUs) in low- and middle-income countries (LMICs), high treatment intensity and out-of-pocket expenditures can lead to a misalignment between delivered care and patients’ values. In 2019, a tertiary hospital in India implemented the BLUE MAPLE program to integrate specialist palliative care (SPC) into routine ICU workflows. We evaluated temporal patterns in program uptake, referral timing, and documentation of decision-making processes following implementation. Methods: We conducted a retrospective, theory-informed evaluation of consecutive ICU patients referred to SPC between Jan 1, 2019, and Dec 31, 2024, using routinely collected clinical and administrative data. We examined trends in referral volume, ICU-to-SPC interval, and documentation of goals of care (GoC), limitation of life-sustaining treatment (LST), and futility. Post-referral outcomes, including mortality and discharge against medical advice (DAMA), were also described. Findings: Among 1,871 patients referred to SPC (mean age 61 years [SD 16·6]; 33% women), treatment intensity at referral was high (71% receiving mechanical ventilation; 58% inotropes). Annual referrals increased from 35 in 2019 to a peak of 611 in 2023, then to 487 in 2024. Median ICU-to-SPC intervals remained short (3–6 days) across years. Documentation of GoC discussions increased steadily over time, while documentation of LST limitation and futility showed a non-linear pattern, with a decline followed by recovery after 2022. Overall mortality was 57·3%, and DAMA occurred in 13·0% of patients without a consistent temporal trend. Interpretation: Integration of SPC into ICU workflows was feasible and sustained over 6 years in a resource-limited setting, and was associated with increased referral volume, timely involvement for most patients, and improved documentation of decision-making processes. In LMIC ICUs, where financial considerations often influence end-of-life care, indicators of decision quality and value concordance may be more informative than utilization metrics alone.

Paediatric palliative care (PPC) in oncology plays a crucial role in enhancing the quality of life for children with cancer and their families. However, outcome measurement in this context remains fragmented, with tools often lacking validation, paediatric specificity, or contextual relevance, especially in low- and middle-income countries (LMICs). This scoping review maps the outcome measurement tools used in paediatric oncology palliative care, examining their assessed domains, psychometric properties and cultural, linguistic and health-system contextual relevance, particularly in LMICs. We systematically searched six databases from 2006 to 2025 and identified 27 eligible studies reporting on 28 unique tools across six key domains: symptom burden, quality of life, psychological well-being, spiritual health, caregiver burden and end-of-life care. While tools like Paediatric Quality of Life Inventory (PedsQL) and Symptom Screening in Pediatrics Tool (SSPedi) showed strong psychometric performance, only a few had been adapted for LMIC contexts. The psychological and spiritual domains were underrepresented, and most tools relied on proxy reporting, which limited child-centred assessments. The findings suggest the need for validated, culturally sensitive and inclusive tools co-developed with children and caregivers. Establishing such outcome measures is essential to ensuring equitable, high-quality palliative care across diverse settings. This review lays the groundwork for developing tools and advancing policies that support comprehensive and compassionate care for children with cancer. Review registration: The review is registered on Open Science Framework (OSF) https://doi.org/10.17605/OSF.IO/G8BN3 .