Project ACCRUE

Vines, Anissa I.; Melvin, Cathy L.; Hunter, Jaimie C.; Carlisle, Veronica

doi:10.18043/ncm.78.2.84

Cited by 3 publications

(2 citation statements)

References 12 publications

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“…Of the 108 studies, 48 studies (44.4%) conducted stakeholder engagement in high‐income countries 5, 23, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70. In contrast, fewer studies conducted stakeholder engagement in middle‐ (30 studies; 27.8%) 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92, 93,...…”

Section: Resultsmentioning

confidence: 99%

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

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IntroductionStakeholder engagement is an essential component of HIV clinical trials. We define stakeholder engagement as an input by individuals or groups with an interest in HIV clinical trials to inform the design or conduct of said trials. Despite its value, stakeholder engagement to inform HIV clinical trials has not been rigorously examined. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines.MethodsWe used the PRISMA checklist and identified English language studies describing stakeholder engagement to inform HIV clinical trials. Four databases (PubMed, Ovid, CINAHL and Web of Science) and six journals were searched, with additional studies identified using handsearching and expert input. Two independent reviewers examined citations, abstracts and full texts. Data were extracted on country, engagement methods, stakeholder types and purpose of stakeholder engagement. Based on the GPP guidelines, we examined how frequently stakeholder engagement was conducted to inform clinical trial research question development, protocol development, recruitment, enrolment, follow‐up, results and dissemination.Results and discussionOf the 917 citations identified, 108 studies were included in the analysis. Forty‐eight studies (44.4%) described stakeholder engagement in high‐income countries, thirty (27.8%) in middle‐income countries and nine (8.3%) in low‐income countries. Fourteen methods for stakeholder engagement were identified, including individual (e.g. interviews) and group (e.g. community advisory boards) strategies. Thirty‐five types of stakeholders were engaged, with approximately half of the studies (60; 55.6%) engaging HIV‐affected community stakeholders (e.g. people living with HIV, at‐risk or related populations of interest). We observed greater frequency of stakeholder engagement to inform protocol development (49 studies; 45.4%) and trial recruitment (47 studies; 43.5%). Fewer studies described stakeholder engagement to inform post‐trial processes related to trial results (3; 2.8%) and dissemination (11; 10.2%).ConclusionsOur findings identify important directions for future stakeholder engagement research and suggestions for policy. Most notably, we found that stakeholder engagement was more frequently conducted to inform early stages of HIV clinical trials compared to later stages. In order to meet recommendations established in the GPP guidelines, greater stakeholder engagement across all clinical trial stages is needed.

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Section: Resultsmentioning

confidence: 99%

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

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“…The AMC has active involvement of community representatives in all phases of study development and implementation, and their expertise can be further leveraged based on these findings. For example, a recent study 24 sought community advisory board input to develop their ‘Lunch and Learn’ intervention aimed to raise awareness and knowledge of AMC clinical trials.…”

Section: Discussionmentioning

confidence: 99%

Participant characteristics and clinical trial decision-making factors in AIDS malignancy consortium treatment trials for HIV-infected persons with cancer (AMC #S006)

Burkhalter

Aboulafia

Botello-Harbaum

et al. 2018

HIV Clinical Trials

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Background. Overall, people living with HIV/AIDS (PLWHA) are living longer, but compared with the general population, they are at elevated risk for numerous AIDS-defining and non-AIDS-defining cancers. The AIDS Malignancy Consortium (AMC) is dedicated to conducting clinical trials aimed at prevention and treatment of cancers among PLWHA. Objective. To examine patient-level characteristics and perceptions that influence decision-making regarding AMC treatment trial participation. Methods. PLWHA diagnosed with cancer or anal high-grade intraepithelial neoplasia who were ≥ 18 years old and offered participation on a therapeutic AMC clinical trial were eligible. Participants completed a 17-item survey assessing sociodemographic and other factors potentially influencing decision-making regarding trial participation. Results. The sample of 67 participants was mainly male (n = 62, 92.5%), non-Hispanic (89.5%) and white (67.2%), with a mean age of 48.3 years. About half of participants were screened for lymphoma studies. Nearly all (98.5%) of the participants learned about AMC clinical trials from a medical provider, most (73.1%) knew little about clinical trials in general, and half decided on trial participation on their own. Altruism was the most frequently cited reason for trial participation. Participant recommendations for improving AMC trial accrual included systems changes to speed access to clinical trials and reduce participant burden. Conclusions. This formative study highlights the perceived benefits to others, i.e., altruism, as an important factor in trial decision-making, little knowledge about clinical trials in general, and the role of physicians in informing participants about clinical trials. Future research should address knowledge barriers and explore systems- and provider-level factors affecting accrual to AMC trials.

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The intersection of travel burdens and financial hardship in cancer care: a scoping review

Planey,

Spees,

Biddell

et al. 2024

JNCI Cancer Spectrum

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Background In addition to greater delays in cancer screening and greater financial hardship, rural-dwelling cancer patients experience greater costs associated with accessing cancer care, including higher cumulative travel costs. This study aimed to identify and synthesize peer-reviewed research on the cumulative and overlapping costs associated with care access and utilization. Methods A scoping review was conducted to identify relevant studies published after 1995. by searching five electronic databases: PubMed, Scopus, Cumulative Index of Nursing and Allied Health Literature (CINAHL), PsycInfo, and Healthcare Administration. Eligibility was determined using the PEO (Population, Exposure, and Outcomes) method, with clearly defined populations (cancer patients), exposures (financial hardship, toxicity, or distress; travel-related burdens), and outcomes (treatment access, treatment outcomes, health-related quality of life, and survival/mortality). Study characteristics, methods, and findings were extracted and summarized. Results Database searches yielded 6,439 results, of which 3,366 were unique citations. Of those, 141 were eligible for full-text review, and 98 studies at the intersection of cancer-related travel burdens and financial hardship were included. Five (5) themes emerged as we extracted from the full-texts of the included articles: (1) Cancer treatment choices, (2) Receipt of guideline-concordant care, (3) Cancer treatment outcomes, (4) Health-related quality of life, and (5) Propensity to participate in clinical trials. Conclusions This scoping review identifies and summarizes available research at the intersection of intersection of cancer care-related travel burdens and financial hardship. This review will inform the development of future interventions aimed at reducing the negative impacts of cancer-care related costs on patient outcomes and quality of life

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Project ACCRUE

Cited by 3 publications

References 12 publications

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Participant characteristics and clinical trial decision-making factors in AIDS malignancy consortium treatment trials for HIV-infected persons with cancer (AMC #S006)

The intersection of travel burdens and financial hardship in cancer care: a scoping review

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