Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study

Oliver, Debra Parker; Benson, Jacquelyn J.; Ulrich, Connie M.; Washington, Karla T.; Rolbiecki, Abigail J.; White, Patrick; Smith, Jamie; C, Lero; Landon, Olivia J.; Demiris, George

doi:10.1016/j.jpainsymman.2020.10.024

Cited by 9 publications

(5 citation statements)

References 17 publications

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“…Intervention duration of less than 15 mins/session and weekly frequency were acceptable to HFCGs (Price). This is in accordance with other studies 17,18 suggesting that investigators must carefully weigh maintaining low burden against the desire for more participation time. It is important to lay the groundwork of connection from the first point of contact for an ongoing reciprocal relationship, using person-centered retention strategies.…”

Section: Lessons Learnedsupporting

confidence: 92%

Recruitment, Retention and Intervention Delivery Experiences With Hospice Family Caregivers

Cruz‐Oliver

Milner

Abshire

et al. 2022

Am J Hosp Palliat Care

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Background Recruitment and attrition are inherently challenging issues in hospice research. We sought to describe strategies of recruitment, retention, and delivery of NOVELA (short for tele novela), an intervention for hospice family caregivers (HFCG). Methods Statistics were kept of every referral, consenting participant, visit session, and intervention activity. We used the Social Marketing Mix Framework to describe recruiting strategies employed and lessons learned. Results Two hospices in the U.S. Mid-Atlantic region referred 47 HFCG and N = 20 agreed to participate, out of which 50% (N = 10) completed all 4 sessions with an average of 2.8 sessions per person, each lasting an average duration of 13.5 minutes (range 8.0-25.7). The main reason for missing a session was a patient’s death (N = 8). Successful recruitment strategies employed in NOVELA included: (a) intensive start-up hospice engagement, (b) remote recruitment and delivery of NOVELA, and (c) scheduling flexibility to work around caregivers’ other demands. Conclusion The recruitment and intervention delivery had successes and challenges resulting in the identification of multiple opportunities to strengthen our strategy and inform future studies with HFCGs.

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Section: Lessons Learnedsupporting

confidence: 92%

Recruitment, Retention and Intervention Delivery Experiences With Hospice Family Caregivers

Cruz‐Oliver

Milner

Abshire

et al. 2022

Am J Hosp Palliat Care

Self Cite

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“…Numerous studies have shown that the unpublished research rate remains high, approximately half of all existing clinical trials are not currently published [ 2 – 8 ]. The non-publication and delayed publication of research not only affects health care planning and delivery, but it is also a failure in our obligation to trial participants who have volunteered to participate in these trials with the expectation that their participation will help others [ 9 – 11 ]. In addition, there are safety concerns that an intervention’s unknown, unpublished adverse effects may increase risks for future trial volunteers [ 12 ].…”

Section: Introductionmentioning

confidence: 99%

Publication bias in trials registered in the Australian New Zealand Clinical Trials Registry: Is it a problem? A cross-sectional study

et al. 2023

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Background Timely publication of clinical trials is critical to ensure the dissemination and implementation of high-quality healthcare evidence. This study investigates the publication rate and time to publication of randomized controlled trials (RCTs) registered in the Australian New Zealand Clinical Trials Registry (ANZCTR). Materials and methods We conducted a cross-sectional study of RCTs registered with the ANZCTR in 2007, 2009, and 2011. Multiple bibliographic databases were searched until October 2021 to identify trial publications. We then calculated publication rates, proportions, and the time to publish calculated from the date of first participation enrolment to publication date. Results Of 1,970 trial registrations, 541 (27%) remained unpublished 10 to 14 years later, and the proportion of trials published decreased by 7% from 2007 to 2011. The average time to publish was 4.63 years. The prospective trial registration rate for 2007, 2009 and 2011 was 48% (952 trials) and over this time there was an increase of 19% (280 prospective trials). Trials funded by non-Industry organizations were more likely to be published (74%, 1204/1625 trials) than the industry-funded trials (61%, 224/345 trials). Larger trials with at least 1000 participants were published at a rate of 88% (85/97 trials) and on average took 5.4 years to be published. Smaller trials with less than 100 participants were published at a lower rate with 67% (687/1024 trials) published and these trials took 4.31 years on average to publish. Conclusions Just over a quarter of all trials on the ANZCTR for 2007, 2009, and 2011 remain unpublished over a decade later. The average time to publication of nearly five years may reflect the larger trials which will have taken longer to recruit participants. Over half of study sample trials were retrospectively registered, but prospective registration improved over time, highlighting the role of mandating trial registration.

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“…Unreported research results do not contribute to the evidence base or to patient care. This is a failure of our obligation, as researchers, to the trial volunteers who enter trials with the belief that their contribution will go towards helping others 3–5. The AllTrials campaign,2 launched in 2013, advocated for trial registration and for the results of all trials to be publicly available within 1 year of trial completion.…”

Section: Introductionmentioning

confidence: 99%

“…This is a failure of our obligation, as researchers, to the trial volunteers who enter trials with the belief that their contribution will go towards helping others. [3][4][5] The AllTrials campaign, 2 launched in 2013, advocated for trial registration and for the results of all trials to be publicly available within 1 year of trial completion. This stance has been strongly supported by many international trial stakeholders and a joint statement issued from The WHO in 2017 6 called on the 23 signatories from around the world to agree on and promote the prospective registration of trials and the prompt reporting of trial results.…”

Section: Introductionmentioning

confidence: 99%

Is our public research money well spent? Publication of research outputs from Health Research Council of New Zealand-funded studies: a cross-sectional study

et al. 2023

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ObjectiveTo evaluate the reporting of results from the projects and programmes funded by the Health Research Council (HRC) New Zealand.DesignA cross-sectional analysis.SettingResearch projects and programmes funded by the HRC New Zealand from 2006 to 2014.ParticipantsPublicly available data provided by the HRC.Main outcome measuresThe number and proportion with evidence of publication and dissemination of a research output from HRC grants and the time taken to disseminate the results.ResultsOf the 374 HRC grants from 2006 to 2014, there was no evidence of publication or reporting of any research output for 48 studies (13%). Of the 326 (87%) grants with research outputs, there was a mean dissemination time of 4.73 years (SD 2.37). The total funding provided by the HRC was NZ$471 663 336, while the 48 grants with no evidence of dissemination represented NZ$47 095 727 (10%).ConclusionsThirteen per cent of the HRC projects and programmes from 2006 to 2014 have not contributed to the healthcare evidence as their results remain unknown.

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Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study

Cited by 9 publications

References 17 publications

Recruitment, Retention and Intervention Delivery Experiences With Hospice Family Caregivers

Recruitment, Retention and Intervention Delivery Experiences With Hospice Family Caregivers

Publication bias in trials registered in the Australian New Zealand Clinical Trials Registry: Is it a problem? A cross-sectional study

Is our public research money well spent? Publication of research outputs from Health Research Council of New Zealand-funded studies: a cross-sectional study

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