The Current Landscape of Research Advocacy and Education for Patients with Colorectal Cancer

Garcia, Reese; Dwyer, Andrea; Worrall, Sharyn; McAbee, Keavy; Davis, Anjelica Q.

doi:10.1007/s11864-022-00970-4

Cited by 5 publications

(3 citation statements)

References 18 publications

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“…In their scoping review on patient engagement in Canada, Manafo et al found that when patients are engaged in research, there are improved research effectiveness and understanding of the community as well as increased enrolment and mobilisation of findings [16]. Patient engagement in cancer research has increased greatly over the last decade across many jurisdictions [3,5,12] and is of particular relevance for AYAs with lived experience of unique age-related challenges (e.g., sexual and reproductive health) [1,2,11,12].…”

Section: Future Directionsmentioning

confidence: 99%

“…The past two decades have seen growth in patient engagement in cancer research; that is, involving patients as partners across all phases of a study beyond the traditional roles as participants [1][2][3]. Indeed, with the complexity of cancer, its treatments, and significant short-and long-term impacts, involving patients in the design, conduct, and translation enriches cancer research with lived expertise.…”

Section: Introductionmentioning

confidence: 99%

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Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies

Oveisi,

Cheng,

Taylor

et al. 2024

Current Oncology

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Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the “FUTURE” Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework’s development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.

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Section: Future Directionsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies

Oveisi,

Cheng,

Taylor

et al. 2024

Current Oncology

View full text Add to dashboard Cite

show abstract

“…Although proven challenging, the participation of patients or their representatives in every area of research, including basic, translational, and clinical research, can influence the agenda setting. Patient advocates help by prioritizing issues and research questions; evaluating research designs and the performance of the research; the analysis and interpretation of data; and how results are disseminated ( 56 ).…”

Section: Patient Advocacymentioning

confidence: 99%

The impact of clinical and translational research on the quality of life during the metastatic colorectal cancer patient journey

Rodriguez Castells,

Baraibar,

Ros

et al. 2023

Front. Oncol.

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The journey of metastatic colorectal cancer patients is complex and challenging, requiring coordination and collaboration between multiple healthcare providers. Understanding patients’ needs, fears, feelings, concerns, and behaviors is essential for providing individualized patient-centered care. In recent years, mCRC patients have experienced improvements in clinical outcomes, from 16 months of overall survival to 32 months, thanks to research. However, there is still room for improvement, and integrating clinical and translational research into routine practice can help patients benefit from treatments and techniques that would not be an option. In the Journey of mCRC patients, living well with cancer and quality of life becomes a priority given the outcomes of the disease. Patient reported outcomes (PRO) and Patient Reported Outcome Measures (PROMs) are becoming therefore new estimands in Oncology. Patient advocates represent important figures in this process by prioritizing issues and research questions; evaluating research designs and the performance of the research; the analysis and interpretation of data; and how results are disseminated. Multidisciplinary Tumor Boards and shared decision-making is essential for designing treatment strategies for individual patients. Quality of Life is often prioritized only when it comes to refractory advanced disease and end-of-life care, but it has to be integrated from the beginning, as the emotional impact of diagnosis leads to a vulnerable situation where patients’ needs and preferences can be easily overseen. First-line treatment will be chosen among more treatment options than subsequent lines, with longer progression-free survival and a bigger impact on the outcomes. Practicing patient-centered care and optimizing first-line treatment for colorectal cancer patients requires a comprehensive understanding of patient experience and treatment outcomes, which can guide clinical practice and inform regulatory decisions for the benefit of patients.

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Women, power, and cancer: a Lancet Commission

Ginsburg,

Vanderpuye,

Beddoe

et al. 2023

The Lancet

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The Current Landscape of Research Advocacy and Education for Patients with Colorectal Cancer

Cited by 5 publications

References 18 publications

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies

The impact of clinical and translational research on the quality of life during the metastatic colorectal cancer patient journey

Women, power, and cancer: a Lancet Commission

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