Enhancing Participation of Older Women in Surgical Trials

Goode, Patricia S.; FitzGerald, Mary P.; Richter, Holly E.; Whitehead, William E.; Nygaard, Ingrid; Wren, Patricia A.; Zyczynski, Halina M.; Cundiff, Geoffrey W.; Menefee, Shawn A.; Senka, Judith; Gao, Xin; Weber, Anne M.

doi:10.1016/j.jamcollsurg.2008.03.012

Cited by 21 publications

(11 citation statements)

References 25 publications

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“…Last, a lack of financial compensation for time was endorsed as a participation barrier, particularly among non-White participants. Our findings are supported by research in older clinical populations (e.g., patients with diabetes or undergoing surgery) that report similar barriers, including insufficient time [15, 16], inadequate transportation [15], and an unwillingness to travel to the study location [28]. Findings from the current study extend prior work by suggesting that these barriers are an issue for increasing involvement in Center-approved studies among a cohort who has already joined the registry and committed to its annual visit.…”

Section: Discussionsupporting

confidence: 81%

“…Focus group findings from AD caregivers suggest that a lack of direct medical benefit, testing procedures, insufficient time, research skepticism, and difficulty coping with the AD diagnosis are major participation obstacles [13]. Survey and interview data suggest similar barriers are expressed in broader clinical research areas, such as cancer and diabetes trials, including caregiver unwillingness [14, 15], discomfort with research methods [10, 16], insufficient time [15, 16], inadequate transportation [15], and patients’ deteriorating health [14, 15]. …”

Section: Introductionmentioning

confidence: 99%

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Clinical Research Participation among Aging Adults Enrolled in an Alzheimer's Disease Center Research Registry

Jefferson

Lambe

Chaisson

et al. 2011

JAD

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In light of our limited understanding of what motivates older adults to participate in clinical studies of Alzheimer’s disease (AD), the current study examines incentives and barriers to participating in AD clinical research among older adults. 235 participants enrolled in the Boston University Alzheimer’s Disease Center research registry (75 ± 8 years, range 58–99 years, 60% female), a longitudinal registry from which individuals are recruited into other clinical studies, completed a survey assessing registry participation satisfaction, religiousness, trust in healthcare institutions, and medical research attitudes. Most participants reported initially enrolling in the registry for societal benefit. Insufficient time was a commonly endorsed barrier to enrolling in other Center-approved studies, particularly among younger participants. Driving and a lack of transportation to the medical facility were also barriers, particularly for older participants. Transportation was the most popular incentive, followed by home-based visits (particularly for older participants and participants with less formal education) and compensation (particularly among respondents from racial/ethnic minority groups). Participation interest in other studies was associated with favorable medical research attitudes (r = 0.34, p = 0.00003) but not religiousness (r = −0.09 p = 0.21) or trust in healthcare institutions (r = 0.09, p = 0.17). Among older adults, societal benefit is a motivating factor for registry enrollment; however, participation in additional studies is hindered by insufficient time among younger participants and transportation barriers among older participants. Providing transportation, home-based visits, and modest compensation may improve participation rates. Furthermore, favorable attitudes toward medical research are strongly associated with interest in enrolling in additional studies and may serve as a beneficial outreach triage technique.

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Section: Discussionsupporting

confidence: 81%

Section: Introductionmentioning

confidence: 99%

Clinical Research Participation among Aging Adults Enrolled in an Alzheimer's Disease Center Research Registry

Jefferson

Lambe

Chaisson

et al. 2011

JAD

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“…The time commitment required to participate in a clinical trial is identified as an important barrier to participation. The time costs included the inconvenience of trial related requirements and visits; travel; following specific regimens and completing a daily diary log [6] , [9] , [42] , [43] . The time to arrange transport was the greatest barrier for participation [14] , [26] and this is likely to be due to the lack of clinical trials available in rural areas [27] .…”

Section: Resultsmentioning

confidence: 99%

“…In the clinical trial setting altruism is seen as an act for the betterment of mankind [43] . The most common explanations of altruism within this review was the act of unselfishness for contribution to medicine and science [7] , [8] , [10] , [19] , [25] , [30] , and to help others, be it the community or nursing care, family or future patients [8] , [9] , [16] , [19] , [23] , [38] , [42] , [44] . This review identified that the act of altruism is most likely to be observed within the haematology and oncology settings with it occurring less prominently in settings such as cardiology, gastrointestinal diseases and diabetes.…”

Section: Resultsmentioning

confidence: 99%

Factors affecting patient participation in clinical trials in Ireland: A narrative review

Walsh

Sheridan

2016

Contemporary Clinical Trials Communications

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ObjectiveClinical trials have long been considered the ‘gold standard’ of research generated evidence in health care. Patient recruitment is an important determinant in the success of the trials, yet little focus is placed on the decision making process of patients towards recruitment. Our objective was to identify the key factors pertaining to patient participation in clinical trials, to better understand the identified low participation rate of patients in one clinical research facility within Ireland.DesignNarrative literature review of studies focussing on factors which may act to facilitate or deter patient participation in clinical trials. Studies were identified from Medline, PubMed, Cochrane Library and CINAHL.ResultsSixty-one studies were included in the narrative review: Forty-eight of these papers focused specifically on the patient's perspective of participating in clinical trials. The remaining thirteen related to carers, family and health care professional perspectives of participation. The primary factor influencing participation in clinical trials amongst patients was related to personal factors and these were collectively associated with obtaining a form of personal gain through participation. Cancer was identified as the leading disease entity included in clinical trials followed by HIV and cardiovascular disease.ConclusionThe vast majority of literature relating to participation in clinical trials emanates predominantly from high income countries, with 63% originating from the USA. No studies for inclusion in this review were identified from low income or developing countries and therefore limits the generalizability of the influencing factors.

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“…l Some of these articles described lists of issues, 83 which were useful, but some authors went beyond this to develop understanding. Russell et al 87 used content analysis but embedded it in known literature to move beyond a simple list.…”

Section: Systematic Mapping Review Of Published Qualitative Research mentioning

confidence: 99%

Maximising the value of combining qualitative research and randomised controlled trials in health research: the QUAlitative Research in Trials (QUART) study – a mixed methods study

O’Cathain

Thomas

Drabble

et al. 2014

Health Technology Assessment

128

178

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Enhancing Participation of Older Women in Surgical Trials

Abstract: BACKGROUND-Older participants are often excluded from clinical trials, precluding a representative sample.

Cited by 21 publications

References 25 publications

Clinical Research Participation among Aging Adults Enrolled in an Alzheimer's Disease Center Research Registry

Clinical Research Participation among Aging Adults Enrolled in an Alzheimer's Disease Center Research Registry

Factors affecting patient participation in clinical trials in Ireland: A narrative review

Maximising the value of combining qualitative research and randomised controlled trials in health research: the QUAlitative Research in Trials (QUART) study – a mixed methods study

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