Patients with chronic obstructive pulmonary disease (COPD) may benefit from palliative care including advance care planning, because of their severe symptom burden and high mortality rates. However... Show morePatients with chronic obstructive pulmonary disease (COPD) may benefit from palliative care including advance care planning, because of their severe symptom burden and high mortality rates. However, this care is poorly implemented due to various reasons. Therefore, this thesis aimed to study the effectiveness of palliative care for patients with COPD and how a palliative care approach can be successfully integrated into regular COPD care.A national survey among pulmonologists and general practitioners was conducted to identify the current content and organization of palliative care in COPD in the Netherlands (Chapter 2). A systematic review revealed that very little was known about the effectiveness of palliative care interventions in COPD and how best to implement it in practice (Chapter 3). To close this knowledge gap, the COMPASSION study was designed (Chapter 4). In a cluster randomized controlled trial in eight hospital regions, health care providers of intervention regions were trained to identify palliative patients with COPD using the ProPal-COPD tool, do advance care planning conversations, and manage dyspnea. The effectiveness on patient outcomes was studied (Chapter 5) and factors for successful implementation identified (Chapter 6). Finally, the ProPal-COPD tool was externally validated and user experiences examined (Chapter 7). Show less
BackgroundNon-communicable diseases are currently the leading cause of death in the Netherlands. Meeting the increasingly complex care needs of patients with these diseases is demanding for society... Show moreBackgroundNon-communicable diseases are currently the leading cause of death in the Netherlands. Meeting the increasingly complex care needs of patients with these diseases is demanding for society and our healthcare services.Specialist palliative care diminishes inappropriate end-of-life care and improves quality of life for patients with advanced cancer and other life-limiting diseases.Aims & MethodsUsing 2 national cross-sectional surveys and 2 population-based observational studies, we assessed the value, availability and accessibility of palliative care in the Dutch healthcare system. Using a modified Delphi technique, we developed a national quality framework for palliative care with key elements for integration with regular care.ResultsTimely provision of generalist and specialist palliative care is associated with significantly less potentially inappropriate end-of-life care for patients with advanced cancer.The majority of patients with cancer received no palliative care or only in their last weeks or days of life. Specialist palliative care teams were found to be available in almost all hospitals, but referrals to these teams were consistently low. Our findings implicate a limited availability and accessibility of palliative care.Eight key elements of the Netherlands Quality Framework for Palliative Care were prioritised to improve availability and accessibility to quality palliative care. Show less
Alili, M. el; Smaling, H.J.A.; Joling, K.J.; Achterberg, W.P.; Francke, A.L.; Bosmans, J.E.; Steen, J.T. van der 2020
Background: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also... Show moreBackground: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia.Methods: Nursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated.Results: The Namaste Care Family program was more effective than usual care in terms of QUALID (- 0.062, 95%CI: - 0.40 to 0.28), QALY (0.0017, 95%CI: - 0.059 to 0.063) and GAIN (0.075, 95%CI: - 0.20 to 0.35). Total societal costs were lower for the Namaste Care Family program as compared to usual care (- 552 euro, 95%CI: - 2920 to 1903). However, these differences were not statistically significant. The probability of cost-effectiveness at a ceiling ratio of 0 euro/unit of effect extra was 0.70 for the QUALID, QALY and GAIN.Conclusions: The Namaste Care Family program is dominant over usual care and, thus, cost-effective, although statistical uncertainty was considerable. Show less
