Skip to main content

Table 1 Characteristics of included systematic reviews

From: Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators

Author, year Aim of review (as quoted) Time frame of searches and date range of included studies Population Number of included studies (number in full review if different)
Sample size
Number of unique included studies
Included study design and data collection method Subject of research participation Location of included primary studies AMSTAR score and category
Crane, 2017 [18] The objective of this systematic review was to examine ethical issues surrounding research with children and adolescents from their perspective as participants Time frame: dates not listed.
Range: 2003–2014
Children and adolescents, majority with physical or mental illness 9 studies
(23 in full review)
N = 6326
Unique studies: 8 of 9
Qualitative: 4
Quantitative: 3
Mixed methods: 2
Methods: interviews, focus groups
Any phase vaccine trials Sweden: 2
USA: 7
5, medium
Dhalla, 2013 [19] The objective of this review article is to review barriers to participation in actual preventative HIV vaccine trials Time frame: Cochrane Database for Systematic Reviews (no date), MEDLINE (1950–2012)/PubMed (no date), Embase (1980–2012), Google Scholar (no date). Range: 1994–2010.
Range: 1995–2012
Adults
8 studies involving low-risk adults
12 studies involving ‘higher risk’ adults (e.g. intravenous drug users, gay men, sex workers)
20 studies
N = 18,033
Unique studies: 8 of 20
Qualitative: not reported
Quantitative: not reported
Methods: focus groups, questionnaires, mixed methods, spontaneous reporting
Any phase HIV vaccine trials Canada: 1
Kenya: 1
Spain: 1
Tanzania: 2
Thailand: 4
UK: 1
USA: 8
Multiple countries: 1
Not reported: 1
7, medium
Dhalla, 2014 [20] The objective of this review article is to better understand motivators to participation in actual preventive HIV vaccine trials in terms of perceived social and personal benefits to such participation, as construed at these levels Time frame: dates not listed.
Range: 1997–2011
Adults.
9 studies involving low-risk adults
5 studies involving ‘higher risk’ adults (e.g. intravenous drug users, gay men, sex workers)
6 studies involving a mix of high- and low-risk adults
1 study unknown risk
21 studies
N = 32,825
Unique studies: 11 of 21
Qualitative: not reported
Quantitative: not reported
Methods: questionnaires, interviews, telephone hotline and focus groups
Any phase HIV vaccine trials Canada: 1
Italy: 1
Spain: 1
Tanzania: 2
Thailand: 6
UK: 1
USA: 6
Multiple countries: 3
6, medium
Fayter, 2007 [10] Our aim was to undertake a systematic review of the relevant literature relating to the barriers, modifiers, and benefits involved in participating in RCTs of cancer therapies as perceived by health care providers and patients Time frame: 1996–2004
Range: 1996–2004
Patients (adults and children) diagnosed with various cancers 37 studies (56 in full review)
N = 25,788 (plus an unreported number from 4 studies)
Unique studies: 23 of 37
Qualitative: not reported
Quantitative: not reported.
Methods: surveys, focus groups, chart review, case controlled studies
Randomised controlled trials (excluding solely phase I or II) Australia: 3
Canada: 1
Denmark: 1
Finland: 1
Italy: 1
Netherlands: 1
Sweden: 1
UK: 12
USA: 15
Multiple countries: 1
8, high
Fisher, 2011 [21] This review takes a different focus and considers the reasons that parents accept or decline an invitation to enrol children of any age in clinical research Time frame: Scopus 1960 to Feb 2010; Web of Knowledge 1971 to Feb 2010
Range: 2001–2011
Parents/caregivers of children invited to take part in research
Two thirds of studies involved children with life-limiting or life-threatening conditions including cancer and diabetes
16 studies
N = 365 (plus an unreported number from one study)
Unique studies: 10 of 16
Qualitative: 16
Quantitative: 0
Methods: interviews, focus groups, ethnography, content analysis of websites
14 trials, 2 unclear Canada: 1
Gambia: 1
Malawi: 1
UK: 4
USA: 9
7, medium
Forcina, 2018 [22] We aimed to conduct a systematic review of studies limited to AYA patients which assessed attitudes and beliefs that influence cancer CT enrolment to prioritize areas for future study and intervention Time frame:
inception to May 2017
Range: 2009–2016
Adolescent and young adult cancer patients aged 15–39 years 6 studies
N = 754
Unique studies: 4 of 6
Qualitative: not reported
Quantitative: not reported
Methods: semi-structured interviews, questionnaires/surveys
Cancer clinical trials USA: 1
Not reported: 5
6, medium
Gad, 2018 [23] We conducted a literature review to determine (1) the factors that influence [cancer] patients’ decisions to enter a phase I trial, (2) patients’ perceptions of the information they receive when they are invited to participate in a phase I trial and (3) relatives’ perceptions of the information given to patients Time frame: inception to April 2017.
Range: 1995–2014
Adult patients diagnosed with various cancers 15 studies (37 in full review)
N = 1313
Unique studies: 10 of 15
Qualitative: 4
Quantitative: 11
Methods: interviews, questionnaires, focus groups
Phase I trials Canada: 1
Italy: 1
Japan: 2
UK: 3
USA: 8
10, high
Glover, 2015 [24] To our knowledge there have been no reviews that specifically focus on barriers or facilitators for Indigenous peoples’ participation in RCTs. This paper aims to address that knowledge gap by presenting the findings of a systematic review of the literature on challenges and facilitators of participation in health RCTs amongst Indigenous people from New Zealand, Australia, Canada and the USA Time frame: inception to March 2012.
Date range: 1994–2011
5 studies with Indigenous or Aboriginal Australians, 4 studies with First Nation participants, 6 studies with Maori participants, 31 studies with Native Americans or Alaskan Natives
The majority (N = 11) focused on cancer, 7 on diabetes, 6 on substance abuse and 22 on other conditions/factors
46 studies
N = not reported
Unique studies: 45 of 46
Qualitative: not reported
Quantitative: not reported
Methods: not reported
Randomised controlled trials Australia: 5
Canada: 4
New Zealand: 6
USA: 31
5, medium
Grand, 2012 [25] This review examines the relationship between the obstacles to participation in cancer clinical trials and accrual, focusing wherever possible on clinical trials in radiation oncology Time frame: 1984 to 2009
Range: 1983–2007
Patients diagnosed with various cancers 20 studies (31 in full review)
N = 13,681
Unique studies: 15 of 20
Qualitative: not reported
Quantitative: not reported
Methods: questionnaires, interviews, surveys, review of patient/trial records, focus groups
Oncology clinical trials Not reported 5, medium
Gregersen, 2019 [26] To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision-making process Time frame: dates not listed
Range: 2000–2016
Adult patients with advanced cancer 11 studies
N = 203
Unique studies: 4 of 11
Qualitative: 11
Quantitative: 0
Methods: interviews, focus groups
Clinical trials USA: 6
UK: 3
Japan: 1
Sweden: 1
5, medium
Hughes-Morley, 2015 [27] Our aims in undertaking this review were firstly to systematically identify relevant qualitative studies describing factors affecting recruitment of participants into depression trials; and secondly to perform a meta-synthesis to identify common themes that describe factors affecting recruitment into depression trials, to develop a conceptual framework of factors influencing the decision to participate in depression trials Time frame: ASSIA 1987 to April 2013; CINAHL 1937 to April 2013; Embase 1974 to April 2013; MEDLINE 1946 to March 2013; PsychInfo 1806 to April 2013
Range: 2007–2012
Patients with depression 4 studies (15 in full review)
N = 1034
Unique studies: 4 of 4
Qualitative: 4
Quantitative: 0
Methods: questionnaire, interviews, focus groups
Randomised controlled trials UK: 3
Multiple countries: 1
9, high
Liljas, 2017 [28] This systematic review aimed to identify facilitators, barriers and strategies for engaging ‘hard to reach’ older people in research on health promotion; the oldest old (≥ 80 years), older people from black and minority ethnic groups (BME) and older people living in deprived areas Time frame: 1990 to 2014
Range: 1996–2014
18 studies of BME older people (aged over 50 years), 3 studies with oldest old patients (80 years and over) and 2 studies of older people in deprived areas 23 studies
N = not reported
Unique studies: 23 of 23
Qualitative: 12
Quantitative: 10
Mixed methods: 1
Methods: surveys, questionnaires, interviews, focus groups
Not reported. Studies focused on health promotion Canada: 1
New Zealand: 1
UK: 4
USA: 17
7, medium
Limkakeng, 2013a [29] We carried out a systematic review of literature published between 1985 and 2009 to understand Chinese patients’ motivations and concerns to participate in clinical trials Time frame: 1985–2009
Range: 2004–2008
Chinese adults between 18 years and 85 years
1 study relating to HIV vaccine trials and 1 relating to cancer, 3 studies non-specific
5 studies
N = 645
Unique studies: 5 of 5
Qualitative: 3
Quantitative: 2
Methods: surveys, interviews
Clinical trials USA: 3
China: 1
Singapore: 1
8, high
Limkakeng, 2013b [30] The objective of this study was to conduct a systematic review and metasummary to evaluate what values, attitudes or beliefs on the part of potential or actual research participants with emergent medical conditions influence participation in research Time frame: inception to 2011
Range: 2000–2009
Adult patients aged over 18 years
5 studies focused on suspected myocardial infarction patients, 3 on stroke patients, 1 on sudden cardiac near-death survivors and 5 on other emergency patients
14 studies
N = 4003 (plus 1 study unclear)
Unique studies: 12 of 14
Qualitative: 6
Quantitative (survey): 8
Mixed methods: 3
Methods: surveys, interviews
Not reported. Primarily conducted in American and Western European contexts Number not reported 7, medium
Martinsen, 2016 [31] The aim of the current report was to perform a systematic review of the current literature on participation motives, response rates and recruitment
strategies in research bronchoscopy studies with an emphasis on studies including COPD patients
Time frame: dates not listed
Range: 1998–2013
Patients with HIV, bronchoscopy patients, smokers, children with or without cystic fibrosis and parents 6 studies (7 in full review)
N = 455
Unique studies: 6 of 6
Qualitative: not reported
Quantitative: not reported
Methods: interviews and questionnaires, focus groups, surveys
Not reported The Netherlands: 1
UK: 3
USA: 1
Multiple countries: 1
5, medium
McCann, 2007 [32] The aim of this review was to draw together qualitative and quantitative studies reporting patients’ experiences of trial recruitment and participation to provide a broad-based overview of the literature Time frame: 1996–2005
Range: 1982–2005
Demographic data largely not reported. Range of trials including HIV, cancer, neonatal and myocardial infarction 32 studies
N = 6068
Unique studies: 21 of 32
Qualitative: 12
Quantitative: 12
Mixed methods: 3
Systematic reviews: 5
Methods: interviews, questionnaires
Phase III trials Denmark: 2
Europe: 1
Israel: 1
UK: 13
USA: 9
The Netherlands: 1
Multiple countries: 5
4, medium
McCann, 2013 [33] Update of 2007 review—no new objective stated Time frame: September 2005 to December 2010
Range: 2006–2010
Patients with a variety of conditions including cancer, epilepsy, stroke and pre-term labour. One paper discussed interviews with parents of children with leukaemia and 2 studies involved pregnant women or parents 11 studies (12 in full review)
N = 290
Unique studies: 9 of 11
Qualitative: not reported
Quantitative: not reported
Methods: interviews, focus groups, observations
Randomised controlled trials Australia: 1
Denmark: 1
UK: 7
USA: 1
Multiple countries: 1
7, medium
Nalubega, 2015 [34] This review aimed to synthesize and present the best available evidence in relation to HIV research participation in sub-Saharan Africa, based on the views and experiences of research participants Time frame: inception to July 2013. Updated in September 2014
Range: 2004–2014
All current or former adult HIV research participants from sub-Saharan African countries. 16 studies only involved women 21 studies
N = not reported
Unique studies: 18 of 21
Qualitative: 21
Quantitative: 0
Methods: focus groups, interviews, participant observation
Not reported Kenya: 1
Malawi: 1
South Africa: 12
Tanzania: 4
Zimbabwe: 1
Multiple countries: 2
9, high
Nielsen, 2019 [35] The aim of this study was to examine cancer patients’ perceptions of factors that may influence their decisions on participation in phase I–III clinical drug trials Time frame: 2010–2016
Range: 2010–2013
Adult cancer patients 9 studies
N = 236
Unique studies: 3 of 9
Qualitative: 9
Quantitative: 0
Methods: interviews, questionnaires
Cancer clinical drug trials USA: 7
Japan: 1
Sweden: 1
5, medium
Nievaard, 2004 [36] To assess the factors that may influence a patient’s consent to participate in a clinical trial Time frame: 1980 to April 2002
Range: 1984–2002
Adult patients. 14 with cancer patients, 5 with HIV patients, 6 from other patient groups and 5 did not report the patient group 30 studies
N = not reported
Unique studies: 19 of 30
Qualitative: not reported
Quantitative: not reported
Methods: Not reported
6 randomised controlled trials, others not reported Australia: 3
USA: 14
Western Europe: 13
5, medium
Nobile, 2013 [37] The aim of this article is to review the literature addressing actual and apparently healthy participants’ reasons to enrol in biobank studies in order to see if some motives are unduly influencing the decision to participate Time frame: inception to Jan to Feb 2012
Range: 2006–2012
Healthy adult participants.
4 studies involved just women
13 studies
N = 1762
Unique studies: 12 of 13
Qualitative: 9
Quantitative: 4
Methods: interviews, focus groups and surveys
Not reported. Australia: 2
Europe: 1
UK: 3
USA: 7
5, medium
Prescott, 1999 [38] To assemble and classify a comprehensive bibliography of factors limiting the quality,number and progress of RCTs. To collate and report the findings, identifying areas where firm conclusions can be drawn, and identifying areas where further research is required Time frame: 1986 to March 1996
Range: 1986–1996
Majority of studies involved cancer patients (N = 9), 2 studies concerning child health involved parents/caregivers 22 studies (27 studies in chapter)
N = 15,295
Unique studies: 19 of 22
Qualitative: not reported
Quantitative: not reported
Surveys, trial data, questionnaires, structured interviews
Clinical trials, not phase I or phase II Australia: 1
Canada: 1
France: 3
The Netherlands: 1
UK: 5
USA: 11
8, high
Quay, 2017 [39] The aim was to identify barriers and facilitators to recruitment of South Asians to health research studies and associated strategies to improve participation Time frame: January 2004 to April 2016
Range: 2004–2016
South Asian patients. Majority of studies involved patients with a condition, e.g. asthma or diabetes 10 studies (15 in full review)
N = 3139
Unique studies: 8 of 10
Qualitative: 9
Quantitative: 6
Methods: surveys, interviews, focus groups, literature reviews
10 randomised controlled trials Australia: 1
India: 1
UK: 7
USA: 1
8, high
Tromp, 2016 [40] This systematic review attempts to answer the following research question: What are motivating and discouraging factors for children and their parents to decide to participate in clinical drug research? Time frame: inception to March 2013. Updated August 2014.
Range: 1997–2013
26 studies involved parents or caregivers/guardians, 5 involved children and 11 involved both. Included children aged between 6 and 21
Diverse research population but many involved oncology patients (11 studies)
39 studies involved people who had consented, 24 involved people who had dissented. 29 studies involved treatments with prospect of direct benefit
42 studies
N = 5500
Unique studies: 33 of 42
Qualitative: 16
Quantitative: 26
Methods: questionnaires, registry analysis, focus group, interviews
Not reported Not reported 7, medium
Van der Zande, 2018 [41] The objective of our paper was to identify and systematically review all articles regarding pregnant women’s reasons to participate in clinical research Time frame: dates not listed
Range: 2013–2016
Pregnant/previously pregnant women 30 studies
N = 7905, plus an unreported number from 1 study
Unique studies: 28 of 30
Quantitative: not reported
Qualitative:
not reported
Methods: interviews, focus groups, questionnaires, surveys, analysis of records
Observational studies and randomised controlled trials UK: 10
USA: 7
Canada: 5
Australia: 2
China: 1
Ghana: 1
Ireland: 1
Italy: 1
Netherlands: 1
Pakistan: 1
5, medium
Woodall, 2010 [42] We aimed to review the current literature on the nature of barriers to participation across different mental health studies with a focus on whether there are specific gender-, age- and ethnicity-related barriers Time frame: 1990 to 2008
Range 1992–2008
Adult participants.
5 schizophrenia studies, 5 depression studies, 6 dementia studies and 5 where the illness was not specified
16 studies (49 in full review)
N = 2033, plus an unreported number from 9 studies
Unique studies: 15 of 16
Qualitative: not reported
Quantitative: not reported
Methods: surveys, interviews, recruitment
Not reported. Australia: 1
Canada: 1
Germany: 1
Mexico: 1
Switzerland: 1
UK: 1
USA: 10
6, medium