its opportunistic nature combined with its resistance to antibiotics allow c. difficile to proliferate in the patient s gut during antibiotic treatment , resulting in a c. difficile infection ( cdi ) [ 3 , 4 ] . with the recent increase in c. difficile prevalence and 1920% of patients experiencing recurring disease , c. difficile has posed significant challenges to the healthcare system . in fact , c. difficile now rivals methicillin - resistant staphylococcus aureus as the most common organism to cause healthcare - associated infection in the united states . patients who suffer from cdi are almost two times as likely to be discharged to a long - term care facility . these increased hospital stays contribute to the us$14.9 billion spent each year on cdi management . while the antibiotics metronidazole and vancomycin are the most commonly used treatments for cdi , recurrences occur in 25% of patients treated with these antibiotics . approximately 12% of these patients experience at least two recurrences and 6% experience more than two . the social impact of cdi and the corresponding treatment options are unknown and are an important implication in the care and quality of life for patients with cdi . fecal microbiota transplantation ( fmt ) , which involves the transplantation of donor stool into the intestine of a patient with cdi , is a promising treatment [ 10 , 11 ] . fmt is thought to treat cdi by reestablishing the structure and function of the disrupted microbiota after an antibiotic treatment . with an average success rate of 92% , fmt has gained mainstream acceptance as a highly effective treatment . however , fmt aesthetics have been identified by physicians as a reason to pursue this therapy only after other options have failed . our research group conducted a patient survey to gain insight on the short - term social , physical , and emotional outcomes for patients who have experienced cdi and have received fmt . the study protocol was reviewed and considered exempt by the university of wisconsin  madison institutional review board as quality improvement . beginning in december of 2013 , our institution began performing fmt for patients with cdi . a list of 30 patients who had received one or more fmts was generated . questions for the survey were generated based on a literature review of relevant quality of life articles for the cdi patient and treatment experience [ 15 , 16 ] . the likert scale was used for patient responses with 0 representing the most severe response and 6 representing the least severe response . the survey included 56 ordinal scale questions that were administered by a trained interviewer over the phone . from october 27 to november 3 , 2014 , patient interviews were recorded as many patients would discuss the personal details of their cdi and fmt experience . descriptive statistics of survey responses regarding the social , physical , and emotional outcomes of cdi and fmt were compared . the median and quartiles ( q1 , q2 , and q3 ) of all likert scale responses for each category were calculated . statistical analysis software v.9.4 ( sas institute , cary , nc , usa ) was used for all median and quartile calculations . at the time of project completion , 30 patients had had cdi and undergone fmt at our institution . however , some patients declined interview or were unable to participate due to cognitive impairment , lack of interest or death . the majority of participants were 65 or older , living independently , and retired when interviewed ( table  1 ) . fmt was performed on the participants 6172  days prior to the interview process . at the time of the interviews , 13 had recovered from cdi , 2 patients still had cdi , and 2 patients were unsure of their cdi status.table  1patient demographicscharacteristicpatient population ( n  =  17)sex  female10 ( 58.8% )  male7 ( 41.1%)age ( years )  18290 ( 0% )  30392 ( 11.8% )  40492 ( 11.8% )  50643 ( 17.6% )  65756 ( 35.3% )  75853 ( 17.6% )  older than 851 ( 5.9%)level of education  did not complete high school0 ( 0% )  completed hs / ged7 ( 41.2% )  some undergraduate4 ( 23.5% )  undergraduate degree5 ( 29.4% )  graduate degree1 ( 5.9%)employment status  retired9 ( 52.9% )  hardly unable to attend school / work3 ( 17.7% )  two weeks off over 6  months1 ( 5.9% )  hospitalized2 ( 11.8% )  unable to work1 ( 5.9% )  at work but  not fully functioning1 ( 5.9%)living status  nursing home / assisted living1 ( 5.9% )  independently16 ( 94.1% ) 
 ged general education development test , hs high school 
 ged general education development test , hs high school the social implications of cdi were highlighted using patient feedback and commentary with the related survey questions ( table  2 ) . the majority of patients were not working ; however , one patient commented that they were at work but  not fully functioning six patients stated that cancelling their social engagements was not necessary because they  were not socially active at that time one patient was  up and down  and was often thinking :  am i ever going to get over this?table  2patient perspectives on the social implications of cdicategory # responsesmedianquartile 
 q 
 1 

 q 
 2 

 q 
 3 
 inability to attend school or work177677cancellation of social engagements172026difficulty in activity participation171013.25avoidance of events with no bathroom162026extent of limited sexual activity173036extent of the lack of understanding from others160001satisfaction with personal life164041for each survey question , n  =  1617 
 cdi 
 clostridium difficile infection patient perspectives on the social implications of cdi for each survey question , n  =  1617 
 cdi 
 clostridium difficile infection patients with cdi avoided events outside their home , such as weddings , vacations , funerals , or other events without a readily available bathroom . patients  did not dare  go to an event where they did not know if there would be a bathroom available and subsequently had to be  very careful , did nt want to take a chance  regarding leaving their home . would need to go  and  it just came [ and ] did nt give you any warning . another patient commented that they  can go [ to the bathroom ] all the time  and subsequently wore diapers to try and contain any accidents . many other patients said they wore diapers so that they would not be troubled by a feeling of needing to go to the bathroom if the need arose . this lifestyle caused one patient to feel they were  not having a life all the way  and that their situation was  depressing , discouraging . these sentiments were echoed in the related survey questions ( table  2 ) , revealing that the typical patient was intentionally taking steps to evade certain social situations . the most severe social response was obtained for the extent to which sexual activity was limited due to cdi . the physical implications of cdi were repeatedly highlighted in patient commentary and feedback in the patient survey ( table  3 ) . on the likert scale questions , many patients responded that they had trouble getting a full night s sleep , reduced energy , and that they generally felt unwell ( table  3 ) . some observed that the more active they were , the worse their cdi got , so they  did nt even try . patients said the frequent diarrhea episodes  take everything out of you  and that it was  terrible , could nt hold it . daily existence was  exhausting  and one patient said they often felt a like  a limp noodle .  the ease with which cdi spreads was of concern as one was another individual was  terrified  of having a second child due to the necessitation of antibiotic treatment and potential of cdi recurrence . this conveyed a significant anxiety among patients regarding the possibility of cdi recurrence.table  3patient perspectives on the physical implications of cdicategory # responsesmedianquartile 
 q 
 1 

 q 
 2 

 q 
 3 
 distress of an upset stomach175356distress of accidental soiling of underwear176566distress of feeling the necessity to use the bathroom with empty bowels173036distress of feeling abdominal bloating1520.524maintenance of goal weight1741.7546trouble of having to pass large amounts of gas173.513.56inability to get a good night s sleep , or trouble of restlessness171.501.53distress of abdominal pain86366distress of feeling unwell170001frequency of abdominal cramps163030extent of physical energy171011for each survey question , n  =  817 
 cdi 
 clostridium difficile infection patient perspectives on the physical implications of cdi for each survey question , n  =  817 
 cdi 
 clostridium difficile infection two patients noticed no improvement in their diarrhea after their fmt procedure . one patient commented that their diarrhea improved within 1  day and another said it took 3  weeks after the fmt . for six individuals , four patients did not have abdominal pain prior to the fmt . for two individuals , some patients commented that , after undergoing the fmt procedure , their abdominal pain improved within 1  day , with another patient stating it took 1  week . the emotional implications of cdi were evident in patient responses to the survey questions and corroborated by patient commentary ( table  4 ) . keep it [ their emotions ] contained  and  the ones around [ them ] understand  . five of 16 patients reported that their well - being did not improve after fmt . six of 16 patients stated that their well - being improved after receiving fmt . within 1  day of their fmt for two of eight patients , their well - being improved within 1 week of their fmt . in interviews , patients also said they were conscious of the additional burden that their cdi and fmt placed on their loved ones when evaluating their own emotional status ( i.e. , tearful or upset ) . for this reason , some patients chose to only share their diagnosis with a small group of immediate family or friends . the secrecy around many patients cdi diagnoses may have contributed to many patients commenting that they felt depressed and discouraged due to their condition ( table  4).table  4patient perspectives on the emotional implications of cdicategory # responsesmedianquartile 
 q 
 1 

 q 
 2 

 q 
 3 
 frequency of irritable feelings1730.7535.25frequency of anger due to bowel problems173236frequency of feeling tearful or upset172025frequency of feeling embarrassed due to soiling or unpleasant odors caused by a bowel movement175456frequency of feeling relaxed and free of tension1762.566frequency of feeling worried or anxious171015frequency of feeling depressed or discouraged171013anxiety for fear of not finding a bathroom174045for each survey question , n  =  17 
 cdi 
 clostridium difficile infection patient perspectives on the emotional implications of cdi for each survey question , n  =  17 
 cdi 
 clostridium difficile infection survey questions about the fmt experience revealed varying results . patients generally did not find the need to discuss their illness with their donor to be difficult ( table  5 ) . one patient said a stool bank would be their preferred method for obtaining a donor because it would be  awesome  and  faster  than engaging in the uncomfortable conversations with individuals that patients would like to have donate stool on their behalf . for 13 patients , the donor for their fmt was a relative . for two individuals , their fmt donor was a spouse . one patient said that the process of finding a fmt donor would have been much more difficult had their spouse not been able to donate . another patient said they had great apprehension about finding a stool donor and were very embarrassed about their fmt diagnosis until a family member had volunteered . a healthcare worker donated stool for one patient . at the time of the patient interviews , 12 individuals were not living with their stool donors.table  5patient feedback on fmt experience and outcomescategory # responsesmedianquartile 
 q 
 1 

 q 
 2 

 q 
 3 
 satisfaction with fmt1053.2556unappealing nature of handling fecal material174246unappealing nature of brown color and odor of treatment173.513.56unappealing process of finding a donor176266unappealing nature of discussing illness with the donor176666unappealing nature of discussing fmt with the donor176566for each survey question , n  =  1017 
 fmt fecal microbiota transplantation patient feedback on fmt experience and outcomes for each survey question , n  =  1017 
 fmt fecal microbiota transplantation the majority of patients did not question the safety of the fmt and expressed strong faith in their providers recommendations . one patient commented that the process of discussing their fmt with their provider was not a big deal at all as they were willing to do whatever works  and that they had  faith in the doctors and providers . eleven patients responded that they would be willing to pay out - of - pocket for the fmt . six patients stated they would not be willing to pay out - of - pocket for this procedure . twelve patients responded that an enema was their favored delivery mode , with one patient choosing this option because  you could do the majority of treatment at home . two patients preferred a colonoscopy based on their experience . when asked about their preferred treatment setting one patient said a clinic would be preferred as it is :  remote , away from a lot of sick people , which seems to be a problem  and  clean and nice .  two patients interviewed preferred their home for their treatment setting . patients did not find the need to handle fecal material to be that unappealing ( table  5 ) . this was reiterated in their comments as some stated because  [ you ] got to get it done  and  if you need something it is okay . these comments reflect the extent to which patients were desperate for a solution to their struggles with cdi . one patient commented on the brown color and odor of the treatmentwhat s your choice . another patient indicated that the fecal material was  nasty , but i would rather it went away  and  necessary if it would work . the process was not appealing for many but was necessary for the  opportunity to have it [ cdi ] cured . two patients commented that initially in the first few days after their fmt their diarrhea seemed to have improved and/or resolved itself ; however , as time progressed , such an improvement and/or resolution was apparently not the case and their diarrhea returned . both patients who felt this way underwent multiple fmts in an effort to cure their recurrent cdi . findings from this study reveal the short - term social , physical , and emotional outcomes for patients who have had cdi and the experience of fmt . several interviews reflected the significant extent to which cdi can contribute to patients anxiety and subsequently , their overall quality of life . this can be worrisome for patients with cdi who live independently and may be less able to self - report changes in their condition that a friend , peer , or family member may have otherwise observed . patient commentary on the social implications of cdi confirm findings from the literature that these experiences cause major burdens for the patients . their ability to engage in social experiences was severely hampered by the fear of needing a bathroom . subsequently , the social isolation patients with cdi experience could contribute to the feeling of loneliness , anxiety , and depression to which isolated patients are prone . the most severe social implication to cdi and fmt in this survey was the extent to which patients sexual activity was limited . no patients were sexually active as a result of their condition , which may cause increased emotional distress during cdi . currently , there is a lack of data on the impact that cdi may have on patients sexual activity and is an area for further study . providers should consider preemptively addressing these social factors impacting patients with cdi as patients may be reluctant to bring up these issues themselves . patients reported a lack of sleep and reduced energy that may have impacted their ability to attend social engagements and overall quality of life . previous investigations into cdi patients quality of life have shown physical suffering to be a severe result of their illness that altered other aspects of their lives . recognition of the physical burdens and subsequent social isolation that occurs due to cdi needs to be considered when considering treatment . although it appears that diarrhea and abdominal pain were generally resolved after fmt , patients focused on the severe burden of cdi . future studies must attempt to address the patients ability to overcome cdi and whether fmt had the ability to improve their physical burdens . responses to the question  how often have you felt embarrassed as the result of soiling or because of an unpleasant odor caused by your bowel movement  had a median response of 5 a study of 24 patients with cdi subjected to semi - structured interviews revealed similar emotional distress and extreme physical exhaustion that is associated with cdi . the isolation and secrecy that we observed could be implicated in the limited sexual activity in the surveyed patients . the inability to share their experience of cdi appears create a feeling of shame , embarrassment , and low self - esteem . feedback from patients on the overall fmt process reflects their desire for recovery from cdi . the requirement for a fecal donor in order to complete the fmt could potentially add an extra layer of complications and anxieties for an already emotionally strained patient with cdi . however , the majority of patients in this study indicated that finding a stool donor was not a difficult task and that they preferred to select someone on their own . this finding is not in keeping with the prior social and emotional anxieties that were identified when discussing cdi with family and friends . it is possible that patients who experienced social anxiety during cdi were eager to overcome it by any means necessary . many patients were in favor of the creation of stool banks to reduce this hurdle as part of the fmt process . currently , there is interest in expanding safe access to stool for fmt . nonprofit stool banks eliminate the need for identification of a suitable donor , particularly for patients without family members willing or able to donate stool . based on our patient responses , the expansion of stool banks would be a welcome option and would reduce the social and emotional burden for some patients undergoing fmt . the majority of the patients interviewed stated a clinic to be the preferred treatment facility due to facility cleanliness and distance from sick people . these findings may highlight a lack of understanding of cdi as a primarily hospital - acquired illness . previous studies have found that patients generally view hospitals and patient care rooms in a positive , clean sense . therefore , patient education should be an important consideration when physicians are making clinical decisions for the patient . overall , patient responses reflected an overall acceptance of fmt as a treatment to rid themselves of cdi . previous fmt ulcerative colitis patient perspective surveys and focus groups have also found patients are very eager for fmt to become available [ 22 , 23 ] . other studies have found that patients would undergo fmt again and would be interested in fmt as their initial cdi therapy . this is most likely because the prospect of continuing to live with cdi is far worse of an experience than undergoing fmt . while our study provides key information on cdi and fmt patient perspective , our findings have limitations . our sample size was small and results may not be generalizable . although the majority of patients interviewed for this study had positive short - term outcomes after the fmt , the long - term outcomes remain unknown . some patients who were interviewed had received their fmt as little as six  days prior to the interview , while others were not interviewed until approximately six  months after their fmt . this gap in time could have influenced the interview responses obtained from participants compared to those who were interviewed within one week . although our survey indicated that patients were interested in fmt , there could exist emotions or perceptions around the acceptance of the fmt that our survey could not identify . because the interviews took place outside a provider visit , it is possible that patients were not comfortable discussing certain emotions over the phone with someone who is not their physician . the majority of patients interviewed were willing to pay out - of  pocket expenses for the fmt if their insurance did not cover the procedure . to conclude , our study has identified short - term social , physical , and emotional outcomes of patients who have experienced cdi and received fmt . future studies should consider the social , emotional , and physical experience of cdi , as it is isolating and contributes to significant anxiety . although fmt has unappealing characteristics , patients are willing to undergo this treatment to treat cdi . caroline zellmer , travis j. de wolfe , sarah van hoof , rebekah blakney , and nasia safdar have nothing to disclose . the study protocol was reviewed and considered exempt by the university of wisconsin  madison institutional review board as quality improvement . this article is distributed under the terms of the creative commons attribution - noncommercial 4.0 international license ( http://creativecommons.org/licenses/by-nc/4.0/ ) , which permits any noncommercial use , distribution , and reproduction in any medium , provided you give appropriate credit to the original author(s ) and the source , provide a link to the creative commons license , and indicate if changes were made .
introductionclostridium difficile infection ( cdi ) is a severe and increasingly frequent healthcare - associated infection that develops after disruption of the gut microbiota . 
 immunocompromised , hospitalized patients have an increased likelihood of acquiring cdi , leading to lengthened hospital stays , increased medical fees , and higher rates of morbidity and mortality . 
 treatment of cdi is challenging because of limited treatment options and a 1920% recurrence rate . 
 thus , there is a need for effective , affordable and safe treatments for cdi . 
 fecal microbiota transplantation ( fmt ) is the transplantation of donor stool into the intestine of a cdi patient to restore the structure and function of the gut microbiota and eradicate cdi . 
 recently , fmt has become an attractive alternative treatment for cdi due to its overwhelming success rate . 
 however , the patient perspective on the effect of cdi and the role of fmt in that context is lacking.methodswe undertook a patient survey to gather qualitative and quantitative data on the short - term social , physical , emotional outcomes for patients with cdi who have undergone fmt.resultswe found in all patients interviewed that the social implications of cdi were generally more severe than the emotional and physical aspects.conclusionfuture studies should consider evaluating these important patient - centered factors as outcomes . 
 moreover , patients are willing to undergo fmt as treatment for cdi .