IAHPC Research Advisor Dr. Tania Pastrana selects one article from recently published medical literature and describes why it is worthwhile.
Vinches M, Neven A, Fenwarth L, Terada M, Rossi G, et al. BMJ Supportive Palliat Care 2020; 10(2): 249-258. DOI: 10.1136/bmjspcare-2019-002086
Best practice palliative care calls for evidence-based interventions. To compile evidence, we need research. Palliative care is one of the pillars of cancer care; many cancer patients need it. However, there is limited evidence-based care for patients with oncological conditions in palliative care and end-of-life settings.
The authors conducted a metaresearch analysis of the clinicaltrials.gov database to evaluate how clinical research on palliative care is conducted within the setting of advanced cancer.
They sought observational and interventional studies registered before January 1, 2019 that recruited patients with cancer and investigated issues relevant to palliative care (search terms: anxiety, appetite, cognitive function, constipation, depression, dyspnea, emotional function, fatigue, nausea, pain, palliative, quality of life, sleep disturbance, and social function).
The results are interesting.
“Of 3,950 identified studies, 514 were included. The most frequent reason for exclusion was cancer-directed therapy (2,491). In 2007–2012, 161 studies were registered versus 245 in 2013–2018. Included studies were interventional (84%) or observational (16%). Most studies were monocentric (60%), sponsored by academia (79%), and conducted in North America (57%) or Europe (25%). Seventy-nine percent of studies evaluated a heterogeneous population (>1 tumor type). Interventional studies most frequently investigated systemic drugs (34%), behavioral interventions (29%), and procedures for pain (24%). Pain, quality of life, and physical function were the most frequently studied research domains (188, 95 and 52 studies, respectively). The most applied primary outcome measures were efficacy/symptom control (61%), quality of life (14%) and feasibility (12%). Only 16% of the closed studies had published results in PubMed.”
Unfortunately, the authors found methodological issues and lack of reporting as limitations and suggest greater effort to improve clinical research that supports evidence-based palliative care for patients with incurable cancer.
Looking on the bright side, this is a motivating study for researchers!
Objective: This metaresearch of the clinicaltrials.gov database aims to evaluate how clinical research on palliative care is conducted within the setting of advanced cancer.
Methods: Clinicaltrials.gov was searched to identify registered studies recruiting patients with cancer, and investigating issues relevant to palliative care. The European Organisation for Research and Treatment of Cancer QLQ-C15-PAL (Quality of Life in palliative cancer care patients) questionnaire was taken into account to define the research domains of interest. Studies investigating cancer-directed therapy, management of cancer treatment-related adverse events and diagnostic tests were excluded. Publication status was crosschecked using PubMed.
Results: Of 3950 identified studies, 514 were included. The most frequent reason for exclusion was cancer-directed therapy (2491). In 2007–2012, 161 studies were registered versus 245 in 2013–2018. Included studies were interventional (84%) or observational (16%). Most studies were monocentric (60%), sponsored by academia (79%), and conducted in North America (57%) or Europe (25%). Seventy-nine per cent of studies evaluated a heterogeneous population (>1 tumour type). Interventional studies most frequently investigated systemic drugs (34%), behavioural interventions (29%) and procedures for pain (24%). Pain, quality of life and physical function were the most frequently studied research domains (188, 95 and 52 studies, respectively). The most applied primary outcome measures were efficacy/symptom control (61%), quality of life (14%) and feasibility (12%). Only 16% of the closed studies had published results in PubMed.
Conclusions: Our study describes the heterogeneous landscape of studies conducted to address the issues of patients with advanced cancer in palliative care. Albeit the observed increase in the number of studies over the last decade, the generalisation of the results brought by the existing trials is limited due to methodological issues and lack of reporting. A greater effort is needed to improve clinical research that supports evidence-based palliative cancer care.
The concept of compassionate communities, which closely aligns with IAHPC’s mission, is gaining increasing traction in the literature. The articles below are selected from Barry R. Ashpole’s weekly report, Media Watch.
PALLIATIVE CARE & SOCIAL PRACTICE | Online – 2 July 2020 – “Compassionate communities” is an international strategy for implementing a public health approach to palliative and end-of-life care. It recognises that sickness and health, death and loss are a natural part of life, and that care is not only a task for health and social services but is a community responsibility. While professional services are part of the mix, they need to recognise that their role is to work in partnership with civic and personal networks to support social connections and co-design EoL support. There is an international drive towards increasing provision of community-led models of social, psychological and practical support for people living with advanced illness and their families.
BMC PALLIATIVE CARE | Online – 6 July 2020 – “Compassionate communities” is a relatively new palliative care (PC) initiative gaining traction. In this study, the majority of participants recognised services in their current practice related to the model, including social prescribing and the introduction of the Daffodil standards. However, they were not overly familiar with “compassionate communities” as a distinct term or approach to PC. This is a concern given the emphasis in the broader literature as to the central role that GPs have in the implementation of a public health PC approach. If the model is to be expanded, further engagement and training of GPs is an important consideration, to provide a clearer understanding of compassionate communities, their aims, and how this can be achieved in practice.
CLINICAL MEDICINE JOURNAL 2018; 18(1): 6-8. “Compassionate communities” as part of the public health approach to end-of-life care (EoLC) offers the possibility of solving the inequity of the difference in provision of care for those people with incurable cancer and those with non-cancer terminal illnesses. The naturally occurring supportive network surrounding the patient is the starting point for EoLC. The network can provide both hands-on care and support to those providing hands-on care. Healthcare professionals can build much stronger partnerships with these supportive networks and transform EoLC at home. Further possibilities of support can be developed through communities, with implementation of the Compassionate City Charter.
Also of interest
Review: Compassionate Communities – A modern form of organising palliative care. Medycyna Paliatywna 2019; 11(3): 115-119. [In Polish] DOI: 10.5114/pm.2019.89539
Media Watch monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. View current and back issues here.