Increasing patient participation in oncology clinical trials

Chen, Jie; Lü, Ying; Kummar, Shivaani

doi:10.1002/cam4.5150

Cited by 6 publications

(9 citation statements)

References 63 publications

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“…Although family caregivers are essential care partners [ 56 , 57 ], reports from patients themselves will provide primary evidence of their needs and experiences living and dying with a life-limiting condition in Canada. This limitation reflects challenges in conducting palliative care research [ 58 , 59 ] as well as in recruiting and retaining seriously ill patients in research [ 60 – 62 ]. Another limitation was the inclusion of Blacks who were mostly of African origin [ 29 – 29 ].…”

Section: Discussionmentioning

confidence: 99%

Inequities in access to palliative and end-of-life care in the black population in Canada: a scoping review

Bassah,

Beranek,

Kennedy

et al. 2024

Int J Equity Health

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Background Improving equity and early access to palliative care for underserved populations in Canada is a priority. Little is known regarding access to palliative and end-of-life care in the Black population. Methods We undertook a scoping review using the framework by Arksey and O’Malley to identify knowledge, access gaps, and experiences of palliative and end-of-life care among Blacks living with life-limiting illnesses in Canada. Primary studies, discussion papers, books, and reports were considered eligible. We followed a comprehensive search strategy developed by an information scientist. Searches were performed in the following bibliographic databases: Medline, EMBASE, PsycINFO via OVID, CINAHL via EBSCOhost, Scopus and Cochrane Library via Wiley. The search strategy was derived from three main concepts: (1) Black people; (2) Canada and Canadian provinces; (3) Palliative, hospice, or end-of-life care. No publication date or language limits were applied. Titles and abstracts were screened for eligibility by one reviewer and full text by two independent reviewers. Results The search yielded 233 articles. Nineteen articles were selected for full-text review, and 7 articles met the inclusion criteria. These studies were published between 2010 and 2021, and conducted in the provinces of Ontario and Nova Scotia only. Studies used both quantitative and qualitative methods and included cancer decedents, next of kin, family caregivers and religious leaders. Sample sizes in various studies ranged from 6 − 2,606 participants. Included studies reported a general lack of understanding about palliative and end-of-life care, positive and negative experiences, and limited access to palliative and end-of-life care for Blacks, across all care settings. Conclusion Findings suggest limited knowledge of palliative care and inequities in access to palliative and end-of-life care for Blacks living with life-limiting illnesses in 2 Canadian provinces. There is an urgent need for research to inform tailored and culturally acceptable strategies to improve understanding and access to palliative care and end-of-life care among Blacks in Canada.

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Section: Discussionmentioning

confidence: 99%

Inequities in access to palliative and end-of-life care in the black population in Canada: a scoping review

Bassah,

Beranek,

Kennedy

et al. 2024

Int J Equity Health

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“…As mentioned, the literature lacks a comprehensive conceptualization of CP in health care, especially for chronically ill patients. This study fills this gap by conceptualizing participation as a three-dimensional higher-order construct using the biopsychosocial model of treatment and TSR (Bilstein et al , 2022; Chen et al , 2022), which is currently a less focused area in the marketing literature on health care. Based on the findings of our study, patient participation emerged as a three-dimensional behavioral construct and is defined as “the extent to which patients provide or share information, involve in decision making and ensure compliance to the things advised by a healthcare provider.” The existing literature reveals that researchers are either using compliance (one dimension of participation) as a substitute measure for participation (Dellande et al , 2004; Guo et al , 2013; Hausman, 2004) or using CP as a composite measure (Chan et al , 2010; Gallan et al , 2013; Selvin et al , 2021; Yim et al , 2012) without recognizing the significance of each dimension separately.…”

Section: Discussionmentioning

confidence: 99%

“…Despite plentiful literature, the concept of CP is also poorly defined in medical and nursing literature. No single definition exists, and various similar but unrelated terms and concepts like patient adherence, patient collaboration, patient involvement, patient empowerment, patient partnership or patient-centered care are often used interchangeably (Chen et al , 2022; Selvin et al , 2021). Given the intricate nature of CP in health care and reliance on anecdotal evidence, rigorous studies are essential to comprehensively conceptualize participation for chronic disease patients (Dong and Sivakumar, 2017; Selvin et al , 2021).…”

Section: Literature Reviewmentioning

confidence: 99%

“…Transformative services research plays a crucial role in health-care management by providing insight into the necessary changes to the health-care system to manage chronic conditions effectively (Anderson et al , 2018; McColl-Kennedy et al , 2017). The nature of most chronic diseases demands that health-care customers manage their illness conditions daily, irrespective of their overall health (Chen et al , 2022; Ouschan et al , 2006). Chronic illnesses have unique features requiring their customers to participate extensively for a longer time and within their own private sphere in the production and consumption of service (Junaid et al , 2020; Rosenbaum et al , 2017; Spanjol et al , 2015).…”

Section: Introductionmentioning

confidence: 99%

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Conceptualization and validation of customer participation in health care: a study on chronic illnesses management

Junaid,

Goudarzi,

Rasheed

et al. 2024

JSM

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Purpose Contrary to want-based services, customer participation has got lesser attention in high-credence services like health care. Customer participation for patients with chronic illnesses could be life-threatening and goes beyond the service organization’s physical environment. Realizing the importance of transformative service research in health-care services, this study aims to propose and validate the conceptualization of customer participation for patients with chronic illnesses. Design/methodology/approach The study uses sequential exploratory research design with mixed method research. The first phase is a qualitative exploration of the nature and meaning of customer participation by synthesizing theory and insights from semi-structured interviews (N = 75) with doctors, patients and paramedical staff. Next, survey data (N = 690) of patients with chronic illnesses is used to validate the proposed conceptualization. Finally, nomological validity was also tested on an additional survey data set (N = 362) using SEM and FsQCA. Findings The findings reveal that health-care customer participation is a three-dimensional behavioral construct in which a customer can participate by sharing information, involving in decision-making and ensuring compliance. The study also demonstrates that customer participation is a critical driver of satisfaction with life and perceived control on illness. Practical implications The research provides policy guidelines for owners and operators of health-care organizations in developing frameworks for collecting participation data, which can be used in strategies for seeking customer participation. Originality/value The research conceptualizes and validates “customer participation” as a multidimensional higher-order construct for patients with chronic illnesses, rarely focused in services marketing and management research on health care.

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“…Up to 20% of clinical trials either face early termination due to failure to recruit or continue to completion while having failed to meet the original recruitment target [2]. Challenges that impact recruitment to clinical trials include issues related to study design, physician attitude, participant attitude, accessibility, demographics, and socioeconomic disparities [3]. The methods and logistics through which clinical studies are conducted have traditionally placed the clinic or hospital at the core.…”

Section: Introductionmentioning

confidence: 99%

Methods and perceptions of success for patient recruitment in decentralized clinical studies

Miyata,

Tafuto,

Jose

2023

J. Clin. Trans. Sci.

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Patient recruitment, diversity, and retention continue to impede successful and representative clinical studies. This systematic review aims to assess the impact of decentralized methods on recruitment, retention, and diversity in recent clinical studies. A systematic search of literature reporting on recruitment in decentralized clinical studies was performed. Studies were reviewed for those reporting the primary outcome of recruitment in decentralized clinical trials, observational studies, or those covering the topic of clinical trials. Secondary outcomes included retention, participant diversity, and participant satisfaction. This systematic search returned 13 studies highlighting the role of decentralized methods impacting participant recruitment, retention, and diversity in clinical studies. Eleven reported improved recruitment using decentralized methods. Seven of these reported improvements directly compared to traditional methods. Seven studies reported positive retention outcomes, with four directly comparing decentralized methods with traditional methods. Six studies were reported to have trended toward increased diversity in the demographics of the sample population, including race or geographic location. Related reviews have stated a lack of published comparable data to determine if decentralized clinical methods improved recruitment and retention. Results suggest this review addresses such a gap, providing data on how decentralized methods such as virtual visits can positively impact recruitment and retention.

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Increasing patient participation in oncology clinical trials

Cited by 6 publications

References 63 publications

Inequities in access to palliative and end-of-life care in the black population in Canada: a scoping review

Inequities in access to palliative and end-of-life care in the black population in Canada: a scoping review

Conceptualization and validation of customer participation in health care: a study on chronic illnesses management

Methods and perceptions of success for patient recruitment in decentralized clinical studies

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