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Systematic Review of Palliative Care research performed and published: Exploring the meta-research landscape and areas of improvement

Research Project | 5 Project Members

Abstract
Background:
Palliative care aims to alleviate suffering, improve quality of life, and address distressing symptoms in people with advanced disease. Despite its clinical importance, many interventions—particularly pharmacological approaches—are supported by limited high-quality evidence, with recommendations often relying on expert consensus or long-standing routine. Clinical trials are essential to strengthen the evidence base, yet research in palliative care faces well-described barriers such as recruitment challenges, underpowered studies, and premature termination. To our knowledge, no meta-research study has systematically mapped the clinical-trial landscape in palliative care. This review intends to establish a benchmark for research activity, identify under-represented areas, and outline priorities for future investigation, including recruitment expectations and attrition estimates.

Objectives:
This systematic review provides a comprehensive overview of clinical trials conducted in palliative care over the past two decades. We aim to (1) quantify the number, scope, and characteristics of registered and published trials; (2) identify which symptoms and interventions are studied more intensively, and compare this with the known prevalence of symptoms in advanced disease; and (3) document rates and reasons for non-completion or non-publication of registered studies.

Methods:
We will search major trial registries (ClinicalTrials.gov, WHO ICTRP, EudraCT) and bibliographic databases for interventional studies in adult palliative-care populations registered between 2000 and 2020. Eligible studies include prospective interventional designs; pediatric studies and disease-modifying cancer therapies will be excluded. Two reviewers will independently screen records and extract data using piloted forms. Discrepancies between registered and published outcomes will be assessed, and reasons for non-publication will be sought by contacting investigators. Descriptive statistics will summarize study characteristics, with subgroup analyses by symptom category, intervention type, sponsor, and region. Meta-analysis of publication rates will be conducted if appropriate.

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RETUNE

Research Project | 7 Project Members

Tobacco smoking represents a leading health burden in the aging population of people living with HIV in Switzerland. New tools for smoking cessation like electronic cigarettes or nicotine pouches are promising to reduce the harm caused by tobacco smoking. However, high quality evidence of their effectiveness among people living with HIV and outside of explanatory randomized trials is missing.

RETUNE is a highly pragmatic randomized trial, fully embedded in the Swiss HIV Cohort Study (SHCS), using the “Trials within Cohorts” (TwiCs) design.
In the TwiCs design, participants are recruited within a prospective cohort study and can consent not only to regular data collection at cohort visits, but also to be randomized in future low-risk pragmatic trials (“randomization consent”). Participants are informed that only participants randomized to the intervention arm are approached and may then accept or decline the offered intervention. Participants in the intervention who accept the intervention, are asked to sign an “intervention consent”, that only covers additional data collection in this group and the safety/side-effects of the intervention – similar to a routine clinical consent (e.g. consent for a lumbar puncture in clinical care).

RETUNE aims to assess the effectiveness of the offer of a menu including different tobacco cigarettes substitutional products (e-cigarettes, nicotine pouches, nicotine patches) to quit smoking. People with HIV in the SHCS who smoke tobacco cigarettes and who signed the randomization consent will be randomized in a 1:1 ratio to the offer of the menu or to usual care. People are included regardless of their willingness to quit smoking. The primary endpoint is tobacco abstinence after 6 months. RETUNE is a multicenter trial which will include centers in Basel, Bern, Geneva, Lausanne, St. Gallen, and Zurich.

RETUNE is funded by the Tobacco Prevention Fund, the Novartis foundation for medical-biological research, and the Swiss National Science Foundation.

Involved partner:
Swiss HIV Cohort Study