https://orcid.org/0000-0001-9616-2028
Figures
Abstract
Universal stool banks rely on, but face difficulties recruiting, community volunteers to donate stool for faecal microbiota transplantation (FMT) to effectively treat recurrent Clostridioides difficile. This study sought to identify determinants of community members’ willingness to donate stool to guide donor recruitment. 397 Australian residents (52% male, 47% 21–30 years, 63% university educated) completed a survey to gauge willingness to donate stool, bowel habits, information needs, attitudes, barriers, and motives for donation. Most reported regular bowel movements (BMs; 90%), morning BMs (63%), BMs ≤5 minutes duration (67%), and some discomfort doing BMs in public restrooms (69%). Less than half were willing to donate stool in-centre (45% willing) or at home (48%). Important information needs identified by >80% were convenience and travel requirements associated with donation. Main barriers were logistics, capabilities to donate, disgust (e.g., donation process), and discomfort (e.g., privacy). The main motivator was altruism, with compensation secondary. Linear regression models identified less discomfort doing BMs in public restrooms (β = -0.15), understanding benefits to patients (β = 0.15), placing less importance on understanding the donation process (β = -0.13), and positive attitudes (β = 0.56) as determinants of willingness to donate in-centre. Understanding benefits to self (β = 0.11) and patients (β = 0.24), placing less importance on understanding the donation purpose (β = -0.19), and positive attitudes (β = 0.50) determined willingness to donate at home. Stool banks should consider donor’s bowel habits, comfort donating in-centre, and information needs early in recruitment; and implement flexible logistics for potential donors who face time constraints and limited access to stool banks.
Citation: Hyde MK, Masser BM (2020) Determinants of community members’ willingness to donate stool for faecal microbiota transplantation. PLoS ONE 15(12): e0243751. https://doi.org/10.1371/journal.pone.0243751
Editor: Rick K. Wilson, Rice University, UNITED STATES
Received: July 7, 2020; Accepted: November 25, 2020; Published: December 10, 2020
Copyright: © 2020 Hyde, Masser. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All data and supporting information files are available from the Open Science Framework database (https://osf.io/mdwfc/).
Funding: The authors received funding from The University of Queensland Vice-Chancellor’s Strategic Funds (BM) and internal funds granted by The University of Queensland School of Psychology (MH) to collect data using a paid participant panel and to employ a research assistant to assist with data collection and coding. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. There was no additional internal or external funding received for this study.
Competing interests: The authors have declared that no competing interests exist.
Introduction
Faecal microbiota transplantation (FMT) is a highly effective treatment for the 20%-30% of patients who develop recurrent Clostridioides difficile infection (CDI) after first-line treatment with antibiotics [1], and shows promise for other inflammatory bowel diseases and gastrointestinal conditions [2–4]. Successful treatment of recurrent CDI and prevention of recurrence occurs for 70–90% of FMT recipients [1], as well as health care savings following FMT (e.g., 42% reduction in hospital costs in the first year) [5], and substantially improved quality of life [6]. Widespread availability of this increasingly in-demand treatment depends on the availability of willing stool donors. Traditionally, stool has been donated by someone known to the patient. More recently, volunteer donors from universal stool banks are the preferred and more advantageous approach due to stringent screening and fewer delays in access to treatment [1,7]. However, recruitment of volunteer stool donors is challenging and costly [8], numbers of eligible donors rarely meet demand [1], and little information is available about what factors influence people’s decisions to donate stool.
Helping patients and extending current blood donor activities to try stool donation are identified key motivators of stool donors [9], although other research shows that stool donor’s altruistic behaviour (volunteering, donating blood) was not associated with donation frequency or quantity of donations processed as treatments [10]. Medical students [11], and university-affiliated health professionals, students and staff [12], who had greater awareness of FMT or its benefit for patients were more willing to donate stool (58% highly willing to donate [12]). Willingness was predicted by male gender, altruism, preference for economic compensation, positive attitudes towards FMT, blood donation, having considered organ donation, and less concern about barriers to donation (stool collection as unpleasant, invasive screening process, monthly donation as a large commitment) [12]. One-third identified logistics such as the required time commitment and delivery of their donation, as the main barriers to stool donation [12]. Logistics, including the required donation frequency and duration, also prevent potential community donors from progressing beyond pre-screening [8,13–16].
Individual bowel habits such as the frequency, timing, and duration of bowel movements (BM), as well as discomfort donating outside the home environment (e.g., at a collection facility), likely also impact logistics and donation willingness, but their impact has not been considered. Moreover, there is variability in stool collection procedures with some facilities allowing donors to collect stool at home and transport it to a facility [17,18], while others adhere to biosafety regulations that require stool collection to occur in a designated room at the facility [19]. As such, it is important to consider both home and in-centre donation. Regarding bowel habits, general population studies suggest that most people fall within the range of 3 BMs per day to 3 per week, and have morning BMs [20–22], although reports vary depending on measures used [20,23,24], and gender or age differences [21–23,25]. Patients who failed to give a sample for stool banking either could not do a BM, or did a BM outside the designated collection period [26]. Further, consumer surveys report the general public’s discomfort doing a BM away from home due to lack of privacy or embarrassment, with males more comfortable using a public restroom for BMs than females [27].
Given the increasing reliance on community donors to support universal stool banks and FMT programs, the aims of this study were to provide guidance for donor recruitment by examining willingness to donate stool in-centre and at home, and identifying potential contributors to this willingness, particularly bowel habits, information needs, motives and barriers to donation. In doing so, this study also provides the first insight into the Australian community’s willingness to donate stool.
Materials and methods
Human Research Ethics Approval was obtained from The University of Queensland (Approval number 2020000029) and Australian Red Cross Lifeblood (Approval number 2020#03) committees. Participants indicated their consent to participate by selecting a response confirming their consent prior to commencing a survey and by submission of a survey.
This is a cross-sectional study using data obtained from Australian residents aged ≥18 years who completed an online survey (Qualtrics platform). Residents were recruited via the online crowdsourcing platform, Prolific, which connects researchers with community members who have registered to participate in research and receive monetary compensation for their time. Prolific verifies and checks the quality of data provided by participants to ensure that it is high quality. Australian residents registered on Prolific (approximately 1200 active in the past 90 days; 48% male) initially received a notification about the study “Understanding community attitudes towards stool donation”, and were invited to complete a short pre-screening survey to determine if they were eligible to participate. Eligibility criteria were as follows: currently living in Australia; aged 18 years or older; consider yourself to be in good health with no current medical conditions; consider yourself to be of normal weight; are not currently taking medication for a medical condition; do not currently have a chronic digestive disorder or condition that may affect how often you do a bowel movement; and eligible to donate blood.
While the eligibility criteria employed in this study broadly reflected screening criteria for recruitment of community donors to stool banks, it should be noted that there is variability in screening criteria globally. For instance, the Australian Consensus Working Group [28] and the Standard for Faecal Microbiota Transplant Products (TGO 105) [29] states that generally donors should be aged between 16–60 years and donors over the age of 50 should have completed bowel cancer screening. The international consensus conference on stool banking for FMT [17] states younger individuals aged below 50 years (or below 60 years if bowel cancer screening has been completed) are preferred as potential donors. The FMT-standardization Study Group’s Nanjing consensus on methodology of washed microbiota transplantation [19] recommends healthy adults and adolescents, preferably those aged 6–24 years, as FMT donors.
Once participants self-selected into the study and confirmed their eligibility (S1 Appendix), those eligible provided consent to participate by selecting the yes response to confirm that they had read a participant information sheet, understood the topic of the research, understood that their data would be reported in a de-identified form, and agree to participate. Upon consenting, residents were then invited to complete the main survey. Surveys were completed from February 17th to March 18th, 2020, and participants were compensated £6.00 per hour for their time. University human research ethics committee approval was obtained prior to study commencement. Data from a sub-group of these participants that examines a different set of variables regarding the role of ambivalence in eligible blood donors’ decisions to donate stool has been published elsewhere [30].
Survey questions were drawn from published studies on stool donation or from other contexts and adapted. Participant characteristics were assessed using one-item measures of age (in years), gender, education, BMI (kg/m2), current blood donor and registered organ donor status. Self-reports of bowel habits comprised six items that measured frequency of BMs [27,31,32]: whether BMs were regular and occurred every day (yes, no, sometimes), and on average, the daily and weekly frequency of BMs (free-text); and two items assessed when in the day participants usually or most often had a BM (morning, midday, afternoon, evening, night) [27], and approximate duration of BMs from start to finish (minutes). A 4-item sub-scale [33] assessed discomfort having a BM in a public restroom (e.g., I cannot use the toilet in a public restroom to have a BM when other people are around), 0 none of the time to 4 all of the time, Cronbach’s α = 0.91.
Awareness of CDI and FMT prior to the study was established using two items, scored yes, no, unsure [32]. Following this, all participants read short paragraphs describing CDI [34–36], FMT [37–39], and typical requirements for donors and donation to ensure equivalency of knowledge before indicating willingness to donate (S2 Appendix). Willingness to donate to a stool bank was measured via one-item scales across scenarios that varied location: at a collection facility (in-centre) (unknown recipient), at home and deliver to a facility (unknown recipient); and purpose: for a loved one, research, or to develop new treatment(s). Participants indicated their willingness on a slider bar from 0 to 100, where a score of 0 indicated participants were not at all willing to donate, and a score of 100 indicated participants were extremely willing to donate (S1 Appendix). Those indicating willingness to donate stool in-centre or at home (i.e., a score on the scale mid-point of 50 or above) were then presented with questions that asked them to report using free-text responses how often and for how long they would be willing to donate in each scenario. Participants were given an example of how to format their response to ensure clarity and consistency of responses across participants (S1 Appendix). For example, a person willing to give 2 times a day for 1 week would write “2 times a day” in the first free-text box and “1 week” in the second free-text box. One author (MKH) manually coded the free-text responses separately for frequency (e.g., daily and 1 time a day were coded as “1 time a day”) and length of time (e.g., 2 weeks and a fortnight were coded as “2 weeks”). These codes were then manually combined (e.g., “1 time a day for 2 weeks”). Given there was great variability in responses and some were unclear, responses were further coded as: a set number of times, daily, weekly, monthly, yearly, other, or unclear.
Following indicating their willingness to donate, participants rated the importance of nine information items when considering stool donation (e.g., understanding how donating stool could help patients), 1 not at all important to 7 very important [40]. Participants self-reported their general attitudes towards stool donation (no opinion to very positive) and their attitudes towards personally donating (negative, neutral, positive) on 1-item scales [41]. Motives and barriers to donation were identified using two free-text response questions “if you were willing to donate to a stool bank for a person you did not know who was sick with CDI, what would be your main reason(s) for doing so?” and “what would stop you or make it difficult to donate?”.
Statistical analysis
Categorical (frequencies, percentages) and continuous (means, standard deviations) variables were summarised using descriptive statistics. Cronbach’s alpha ≥0.70 confirmed scale reliability. Differences in responses by category were explored using chi-square tests of independence with follow-up z-tests, and continuous variables were examined using univariate analysis of variance with post-hoc Bonferroni tests. Linear regression analysis identified determinants of willingness, with p ≤0.05 indicating significance. Exploratory analyses identified potential differences in responses by gender (male, female), age group (<21, 21–30, 31–40, 41–50, >50) [12], university education (yes, no), discomfort doing BMs in public restrooms (none, some/a little, most/all, of the time), blood and organ donor status (yes, no/unsure).
Free-text qualitative responses were analysed using thematic analysis [42]. Two coders independently generated themes, and these were compared and refined, with disagreements resolved by a third coder. Themes described by ≥10% of participants are reported.
Results
A total of 758 Australian residents received survey invitations, of which 491 met study criteria (64.7% eligible). Of those eligible, 397 provided complete data for analysis (81% response rate). Participants mean age was 29.59 years (SD = 9.33, 18–73). Mean BMI was 24.04 (SD = 3.86), and 65% were in the ‘healthy’ BMI range (18.5 to 24.9).
Almost 90% reported regular BMs. Over half had one BM per day and one-third had seven BMs per week, most had morning BMs, of ≤5 minutes duration. On average, participants experienced some discomfort having BMs in public restrooms (M = 2.71, SD = 1.23, range 1–5, higher scores indicating more discomfort); 69% experienced discomfort at least a little of the time. Table 1 shows participant’s bowel habits overall and by gender and age group. More females (vs. males) had morning BMs and took ≤5 minutes doing so. Fewer participants <21 years had morning BMs, and more participants in this age group had BMs in the evening and at night (vs. other age groups). Significantly more females (vs. males) experienced discomfort most to all of the time having BMs in public restrooms.
Participants appeared neither willing nor unwilling to donate stool in-centre at a stool bank or at home and delivering it, and mean willingness scores did not differ significantly (Table 2). Of those scoring ≥50 on willingness to donate in-centre (n = 212), 61% would donate weekly (24% daily, 7% monthly, 8% a set number of times). Participants willing to donate weekly (n = 129), would donate once (60%) or twice weekly (27%); and 73% would donate for 4 to 12 weeks. Similarly, of participants scoring ≥50 on willingness to donate at home (n = 215), 64% would donate weekly (31% daily, 4% monthly, 1% a set number of times). Those willing to donate weekly (n = 137) would do so once (36%), twice (31%), or three times (16%) weekly; and 72% would donate for 4 to 12 weeks. Table 2 shows participant characteristics by willingness to donate stool when location (in-centre, at home) and purpose for donating vary (loved one, research, new treatments). Willingness differed by blood and organ donor status, bowel habits, discomfort using public restrooms, awareness of CDI and FMT.
Information needs rated as most important (≥6 on the 7-point scale) were convenience of donating (81%) and needing to travel to donate (80%). One-third had very positive attitudes towards donating stool in general and felt positively about personally donating. Table 3 displays participant’s information needs and attitudes towards donating stool. Information needs differed by gender, age group, and education, whereas general attitudes varied by gender and age, and personal attitudes by age.
Table 4 presents hierarchical linear regressions of predictors of willingness to donate stool for a stool bank in-centre and at home. Participant characteristics, bowel habits, and knowledge of FMT were entered into the model at step 1, followed by information needs and attitude to personally donating stool in step 2. At the final model step, significant predictors of willingness to donate in-centre were less discomfort doing a BM in a public restroom, understanding how donating stool could help patients, less need to understand the donation process, and positive attitude towards personally donating (R2 = 0.45). For willingness to donate at home, understanding the personal benefits of donation and for patients, less need to understand the aim of donating stool, and positive attitudes towards personally donating were significant predictors at the final model step (R2 = 0.37). Participant characteristics were significant predictors initially but did not remain so once information needs and attitude were added.
Responses indicating the main reason(s) participants would consider donating stool were thematically analysed and two of seven motives identified were described by >10% of participants. The first main theme, altruism, reflected predominantly impure altruism with participant’s desire to help others generally, or specifically contribute to the recovery of those sick. The second main theme, compensation, focused predominantly on payment as either a primary or secondary motivator in addition to helping others. Table 5 details themes identified for motives and exemplar quotes.
Responses detailing factors that would make it difficult or stop participants from donating were thematically analysed and four of six barriers identified were described by >10% of participants (Table 5). The main barrier, logistics, captured inconvenience generally and specifically related to travel for donation purposes, and lack of flexibility in scheduling/donation requirements. The second barrier, concerns about capabilities, reflected participant’s apprehension that the process would be too difficult or complicated, or they would be unable to successfully complete it. The third and fourth barriers, disgust and discomfort, comprised participant’s feelings of revulsion or embarrassment, and concerns about donating, collecting, and transporting/delivering stool.
Discussion
Participants in this study appeared uncertain about donating stool in-centre and at home, with <30% highly willing to donate in either context; a finding which differs markedly from prior research that suggested strong willingness to donate [12]. Of those expressing some willingness to donate, once or twice weekly donations were preferred over one- to three-month periods. Barriers noted in the current study indicate less willingness when the required donation frequency is high or the duration lengthy [8,12,13]. While acknowledging the need to minimise costs associated with donors, this finding suggests that in the longer term it may be advantageous to recruit more donors for less intensive regimes.
Contributors to willingness to donate stool in-centre and at home included the need to understand how donating stool could help patients now or in the future and having positive attitudes towards personally donating stool. In addition, potential in-centre donors who had less need to understand every step of the donation process (suggesting trust or awareness of the process), and experienced less discomfort doing a BM in a public restroom were more willing to donate. Potential donors who attributed higher importance to knowing how stool donation could personally benefit them, and had less need to understand the aim of donating stool, were more willing to donate stool at home. Addressing potential donor’s information needs, minimising discomfort for donors in-centre, and promoting positive attitudes toward personally donating stool appear key to encourage willing donors.
As with prior research [9,11,12], those who were aware of FMT and were blood donors or registered organ donors were more willing to donate stool. However, this association was specific to the donation setting with blood donors more willing to donate stool in-centre, and those aware of FMT and registered organ donors more willing to donate in both contexts. Contrasting with prior research [12], participant characteristics did not significantly contribute to willingness when other factors were considered.
Most participants reported regular BMs, although there were discrepancies in reports of BM frequency [20,23,24], with 58% reporting one BM daily, but only 28% reporting seven BMs weekly (Table 1). This finding suggests that potential donors may be inaccurate in their estimates. Other studies have similarly noted a discrepancy in daily BMs reported depending on the measure used to assess BM frequency [20,23,24]. For example, Lewis and Heaton [23] reported that most participants had a BM once daily. However, when calculations were based on reported weekly frequency, only a third had a daily BM (women 36%, men 38%). Further, when the interval between BMs was considered (range 22 to 27 hours), approximately half on average had a daily BM interval (46.5% women, 50.7% men). Therefore, universal stool banks with preferences for intensive donation regimes should consider asking potential donors to keep a diary of their bowel habits prior to in-person screening.
BMs occurred most often in the morning and took <5 minutes. Two-thirds experienced some discomfort having BMs in public restrooms, and qualitative responses also showed concerns about lack of privacy and hygiene. No gender or age differences in regularity or frequency of BMs emerged [cf. 21–23,25], although females were more likely to have morning BMs, take less time to complete BMs, and experience greater discomfort having BMs in public restrooms [27]. Younger participants were least likely to have morning BMs and most likely to have BMs in the evening or at night. For in-centre collectors, targeting specific demographic groups to donate at non-peak times (e.g., women early in the morning; younger ages in the evening) may be feasible. Potential donors should also be screened early on in recruitment regarding their discomfort having BMs in public facilities. Recruitment materials should emphasise privacy and hygiene measures implemented in collection facilities to reassure potential donors.
Prominent information needs focused on convenience of stool donation and travel required in order to donate. Information needs also differed by gender, age, and education. For instance, convenience was of greater concern for university educated participants, and travel requirements were more important for females. These information needs align with logistics (e.g., travel, donation requirements, flexibility) and concerns about capabilities to donate as the main barriers identified to stool donation by our sample, and also concur with prior research [12,14–16]. Targeting donor recruitment efforts in locations close to stool banks, clinics or collection facilities would minimise inconvenience and improve logistics. Tying stool donation to another donation type (e.g., blood donation) [43], or another activity that is an established part of a donor’s routine (e.g., workplace donor programs) may also decrease barriers. Potential donors should be provided with a ‘donor journey map’ at an early stage to build their confidence, and provide reassurance that donors have limited interaction with their donation and staff in-centre, once they have donated.
Altruism, most often helping others generally or those specifically with CDI, was identified as the main reason participants would consider donating. This theme is consistent with prior research [9,12], as is the finding in this study that understanding how stool donation could help patients was a significant positive predictor of willingness to donate. Financial compensation was a motivator of lesser importance, and something that would reinforce participant’s primary helping motivation. Donor recruitment materials should emphasise how stool donation helps patients and incorporate messages highlighting the large benefit to recipients versus small cost to donors ratio and helping to advance science.
Strengths of this study include the perspective of potential donors in Australia where stool banks and the need for community donors are rapidly developing [44,45]. It provides information not currently available on potential donors’ bowel habits, discomfort donating outside the home environment, and information needs. It extends research on engaging people in this form of donation which compared to blood and organ donation is relatively novel, with little information available. This study is limited by the potential for participants who were already interested and motivated to donate stool to have self-selected to participate. Further, information about participant’s occupation or location was not collected, preventing a consideration of the influence of these characteristics on willingness to donate. It is possible that participants in this study appeared less willing to donate than the previous Canadian study [12] due to this latter study including participants who were university-affiliated health professionals and thus potentially more willing to donate. Moreover, there is the potential for differences in willingness to donate stool based on region (e.g., urban vs. rural) or country-specific delivery of healthcare systems (e.g., public and private, non-profit and for-profit) and the perceived or actual costs for donors. Country-specific differences in protocols (e.g., age, facilities) and changes in terminology and processes due to advances in automated facilities (e.g., washed microbiota transplantation vs. manual faecal microbiota transplantation [19]) may also impact willingness and acceptability of stool donation. This study is cross-sectional, and therefore limited by its focus on willingness to donate, rather than donor behaviour. Although study eligibility criteria mirrors that used broadly for community donors to stool banks, we relied on self-report rather than objective measures. Finally, although the contributors examined in this study explained a significant proportion of variance in willingness to donate, the variance left unexplained suggests other unidentified factors may inform potential donors’ willingness and these require further exploration.
In conclusion, this study revealed that most Australian community members are uncertain about donating stool. This study identified the importance of and need to consider bowel habits, level of comfort donating in-centre, and potential donor’s information needs as early as possible in the recruitment and screening process to optimise their willingness to donate. Results also confirm that in order to increase the numbers of willing donors, it is critical for universal stool banks and FMT programs to examine logistics associated with recruitment and donation processes and implement strategies that increase flexibility, feasibility, and comprehensibility for potential donors who are constrained by time, knowledge deficits, and limited access to stool banks and facilities.
Supporting information
S2 Appendix. Information presented to participants about CDI, FMT, and stool donation.
https://doi.org/10.1371/journal.pone.0243751.s002
(DOCX)
Acknowledgments
We acknowledge Abby Edwards for assistance with data collection and coding. Australian governments fund Australian Red Cross Lifeblood for the provision of blood, blood products, and services to the Australian community.
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