Month: February 2024

Abstract

Background

Community engagement in research has gained momentum as people have realised the importance and value it brings to research. However, a lack of standardization in the engagement approach has been reported in the literature. This systematic review aims to identify and synthesize the different engagement approaches to contextualize future implementation efforts.

Methods

The databases Patient Centred Outcomes Research Institute (PCORI), PubMed and Google Scholar were searched for English language studies published between 2008 and 2021 that focused on stakeholder involvement and phases of research engagement. Independent reviewers conducted literature search, screening, quality assessment, data extraction and analysis following previous study formats.

Results

Of the 2227 original articles retrieved, 125 were reviewed fully, of which 48 studies were included in this review. Of these 48 studies, 34 (70.8%) were health studies involving any form of engagement, while 14 (29.2%) were non-health. Most studies originated from high income countries, mainly the USA and engaged ethnic minorities, patients, disadvantaged groups and war veterans. All studies reported engagement at various levels. However, there was no standard criteria to select the type of engagement. Engagement with communities was used to develop research tools, identify research questions and harness local experiences. There were different terminologies and engagement approaches, which makes it difficult to synthesise and conceptualize the evidence.

Conclusions

Harnessing local experiences and perspectives by involving stakeholders at the earliest stage is beneficial in terms of clarifying approaches which best fits the local context. It is important to delineate between the traditional and community engagement approach.

Abstract

We explored perspectives of patients with metastatic non-small cell lung cancer (mNSCLC) on symptom screening and population-level patient-reported outcome (PRO) data regarding common symptom trajectories in the year after diagnosis. A qualitative study of patients with mNSCLC was conducted at a Canadian tertiary cancer centre. English-speaking patients diagnosed ≥ 6 months prior to study invitation were recruited, and semi-structured one-on-one interviews were conducted. Patient and treatment characteristics were obtained via chart review. Anonymized interview transcripts underwent deductive-inductive coding and thematic content analysis. Among ten participants (5 (50%) females; median (range) age, 68 (56–77) years; median (range) time since diagnosis, 28.5 (6–72) months; 6 (60%) with smoking histories), six themes were identified in total. Two themes were identified regarding symptom screening: (1) screening is useful for symptom self-monitoring and disclosure to the healthcare team, (2) screening of additional quality-of-life (QOL) domains (smoking-related stigma, sexual dysfunction, and financial toxicity) is desired. Four themes were identified regarding population-level symptom trajectory PRO data: (1) data provide reassurance and motivation to engage in symptom self-management, (2) data should be disclosed after an oncologic treatment plan is developed, (3) data should be communicated via in-person discussion with accompanying patient-education resources, and (4) communication of data should include reassurance about symptom stabilization, acknowledgement of variability in patient experience, and strategies for symptom self-management. The themes and recommendations derived from the patient experience with mNSCLC provide guidance for enhanced symptom screening and utilization of population-level symptom trajectory data for patient education.

Abstract

Approximately 65% of established non-indigenous species (NIS) identified in the Great Lakes–Saint Lawrence River basin (GLSLR) since 1959 were introduced by ballast water discharges from transoceanic vessels. While the rate of new detections has sharply declined, NIS already present may spread within the system—including upstream—through secondary invasions by domestic ballast water transferred mainly by ‘laker’ vessels. Canada has mandated that all vessels loading or unloading in waters under Canadian jurisdiction in the GLSLR will need to use ballast water management systems (BWMS) by 2030. Here we used simulations informed by empirical data to investigate the expected efficacy of BWMS in reducing zooplankton and phytoplankton introductions on a per-trip basis, and the corresponding probabilities of survival and establishment related to ballast water discharges within the GLSLR. We investigated three ballast water scenarios: no treatment, full treatment, and treatment by a partially-functioning BWMS (owing to malfunctions or challenging water quality). Fully-functioning BWMS reduced community pressure by > 99% and corresponding establishment risk of NIS by 38% and 66% relative to untreated ballast discharges for zooplankton and phytoplankton, respectively. Partial treatment (modelled as a 95% reduction in organism concentrations) resulted in 10–20% reduction in per-trip probability of NIS establishment; results indicate that trips with BWMS inoperability caused by highly turbid uptake conditions may be less risky than trips with BWMS inoperability due to plankton blooms. The implementation of BWMS is expected to reduce risk of secondary spread within the GLSLR system by ballast water, even if the BWMS are subject to periodic malfunction.