UBC Faculty Research and Publications

Canadian Men’s perspectives about active surveillance in prostate cancer: need for guidance and resources Fitch, Margaret; Pang, Kittie; Ouellet, Veronique; Loiselle, Carmen; Alibhai, Shabbir; Chevalier, Simone; Drachenberg, Darrel E; Finelli, Antonio; Lattouf, Jean-Baptiste; Sutcliffe, Simon; So, Alan; Tanguay, Simon; Saad, Fred; Mes-Masson, Anne-Marie Oct 27, 2017

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RESEARCH ARTICLE Open AccessCanadian Men’s perspectives about activesurveillance in prostate cancer: need forguidance and resourcesMargaret Fitch1, Kittie Pang1, Veronique Ouellet2, Carmen Loiselle3, Shabbir Alibhai4, Simone Chevalier3,Darrel E. Drachenberg5, Antonio Finelli4, Jean-Baptiste Lattouf2,6, Simon Sutcliffe7, Alan So8, Simon Tanguay3,Fred Saad2,6* and Anne-Marie Mes-Masson2,9AbstractBackground: In prostate cancer, men diagnosed with low risk disease may be monitored through an activesurveillance. This research explored the perspectives of men with prostate cancer regarding their decision-makingprocess for active surveillance to identify factors that influence their decision and assist health professionals in havingconversations about this option.Methods: Focus group interviews (n = 7) were held in several Canadian cities with men (N = 52) diagnosed withprostate cancer and eligible for active surveillance. The men’s viewpoints were captured regarding their understandingof active surveillance, the factors that influenced their decision, and their experience with the approach. A content andtheme analysis was performed on the verbatim transcripts from the sessions.Results: Patients described their concerns of living with their disease without intervention, but were reassured by theclose monitoring under AS while avoiding harmful side effects associated with treatments. Conversations with theirdoctor and how AS was described were cited as key influences in their decision, in addition to availability of informationon treatment options, distrust in the health system, personality, experiences and opinions of others, and personalperspectives on quality of life.Conclusions: Men require a thorough explanation on AS as a safe and valid option, as well as guidance towardssupportive resources in their decision-making.Keywords: Active surveillance, Prostate cancer, Decisions making, Focus group, Low risk diseaseBackgroundProstate cancer, the most commonly diagnosed cancerin Canadian men, accounted for 21,600 new cancer diag-noses in 2016 (Canadian Cancer Statistics, 2016). PCaconsumes a significant amount of treatment resources[1], initiating efforts to distinguish men with high riskdisease who require therapeutic intervention to avertpremature death and disability. For men with low riskdisease, interventional therapy is neither required norappropriate to ensure a lifespan uncompromised by can-cer or by the therapeutic consequences (reviewed in [2]).Presently, men with low risk PCa are given the optionof ‘active surveillance’ (AS). With AS, practitioners delaycurative treatment until there are indications that thedisease is progressing. Very low- or low-risk localizedPCa is defined to include tumor stage (T1c, prostate-specific antigen [PSA] detected or T2a, small palpablenodule); PSA value (less than 10 ng/mL); Gleason score(≤ 6); and extent of disease in biopsy (<3 biopsy corespositive and ≤50% cancer in any cores) [3] (reviewed in[4, 5]). With the advent of PSA screening, more lowrisk cancers have been detected along with recom-mendations of AS.* Correspondence: fred.saad@umontreal.ca2Institut du cancer de Montréal and Centre de recherche du Centrehospitalier de l’Université de Montréal, 900 St Denis St, Montreal, QC, Canada6Department of Surgery Université de Montréal, 2900 Edouard MontpetitBlvd, Montreal, QC, CanadaFull list of author information is available at the end of the article© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Fitch et al. BMC Urology  (2017) 17:98 DOI 10.1186/s12894-017-0290-7Patients and practitioners have expressed discomfortwith the option of AS as a significant proportion ofpatients may be understaged given the intrinsic samplingerror of prostate biopsies [6]. Investigation is underwayto identify biomarkers that accurately detect truly lowrisk disease for patients with a grade 6 cancer or eventhose with Gleason score 7 [1, 7]. This would enlargethe pool of individuals for whom AS would be consid-ered an appropriate approach.The Canadian PCa Biomarker Network team investi-gated the uptake of AS in Canada in 2010 [8]. AS iswidely practiced across Canada, but important regionaldifferences exist in its use for reasons that remainunknown. Additionally, there is little systematic under-standing about the factors that influence the acceptanceof and adherence to AS in PCa in Canada.The uptake of AS is dependent upon patient, clinical,and societal factors that influence the individual’s deci-sion about a regimen of AS. While prevailing publicmessages about cancer advocate immediate treatment,AS infers that curative treatment is applied only whenthe disease progresses to a clinically significant stage.Thus, men who consider AS must decide if they can livewith their disease without receiving any treatment orintervention at all, or for some time.MethodsThis research explored the perspectives of men with PCaregarding their decision-making process for AS. Under-standing men’s perspectives on following a regimen of ASwould help clinicians in providing clear information andmeaningful discussions on treatment options and support-ive care.The study utilized a qualitative descriptive design [9]and recruited men from PCa programs in Montreal,Toronto, Winnipeg, Vancouver, and Thunder Bay. Theseprograms provided access to urologists, medical oncolo-gists and radiation oncologists. Candidates for AS hadlow grade, localized PCa and were informed about thestudy by a clinician providing their care. A local researchcoordinator contacted and informed interested individ-uals on study details and the arrangements for participa-tion upon consent. Research ethics approval wasobtained from each of the participating sites includingthe Centre de recherche du centre hospitalier de l’Uni-versité de Montréal, the McGill University HealthCentre, Cancer Care Manitoba, the University HealthNetwork and the University of British Columbia.Participants either attended one focus group or en-gaged in a single interview if they were unable to attendthe group session. The focus groups and interviews werefacilitated by qualified personnel and were conducted inthe language preferred by the participants (MF all Eng-lish, CL all French). All sessions were attended by threeother team members who assisted with the logistics,note-taking, and clarification of questions from the par-ticipants. Sessions and interviews were audio-recordedand transcribed verbatim.Focus groups and interview guides were developedfor the study and covered the same topic. Participantswere asked to describe their experiences in beingdiagnosed, hearing about AS, deciding their course ofaction, communicating their decision with others,seeking information, being on AS, and decidingwhether to stay on the regime or not. Questions wereopen-ended and probes were inserted only for clarifi-cation purposes.AnalysisThe transcripts were subjected to a qualitative descrip-tion analysis [9]. Four team members (MF, KP, AMM,VO) read transcripts independently, taking marginalnotes about the content. Team members shared theirperspectives on all content identified and designed acontent-coding framework based on shared perspectives.The content-coding framework contained a list of topicsand definitions regarding what type of data belonged ineach of those topic categories. Two members (MF, KP)used this framework to code all transcripts from thefocus groups and interviews, and then reviewed thecoded categories in-depth before summarizing the con-tent for each category with an identified key theme (i.e.,commonly held perspectives by the participants). Theanalysis was presented to three other team memberswho reviewed the clarity and relevance of the findings(two team members had attended the group sessionswhile the other was a clinician who interacted with themen considering AS). The resulting consensus about thefindings provided the basis for this manuscript whichfocuses on decision-making about AS.ResultsPatient characteristicsSeven focus groups were held with locations in Mon-treal (one English and one French), Toronto (twogroups), Winnipeg, Vancouver, and Thunder Bay.Nine men engaged in one-on-one interviews. A totalof 52 men participated, ranging in age from 53 to81 years (mean = 67.8; median = 68). Among them,70.8% had completed post-secondary education orabove. Participants with PCa had been living withtheir disease since diagnosis for 1 to 16 years (me-dian = 3). Table 1 presents the number of men whowere on, or had been on an AS regime. Overall, theparticipants who had been on AS reflected an averageof 3.4 years of experience with the approach (range of1 to 15 years). These data were self-reported by menon the demographic questionnaire.Fitch et al. BMC Urology  (2017) 17:98 Page 2 of 11Perspectives shared by participantsFour main themes emerged from the analysis of data.Each are described below, drawing from relevant contentcategories and illustrated by patient quotes in Table 2.The findings captured a range of perspectives from menon being diagnosed with PCa, seeking relevant informa-tion and communication, and making decisions on theircourse of action. Participants varied in their viewpointsand understandings about AS. Factors that influencedtheir decision-making on AS have implications for clin-ical practice.Theme: an important decision is needed at a time of emotionalupset and uncertaintyConsent for AS was recognized as an important decisionthat required careful consideration within a context ofemotional upset and uncertainty. The emotional up-heaval arose during the assessment of a diagnosis, inhearing the diagnosis, and upon request for a decisionwithout sufficient information and understanding.Obtaining a definite diagnosis can take time Few par-ticipants had symptoms before their diagnosis. Mosthad been followed by their family doctors with regu-lar PSA testing prior to observing a rise in levels.Subsequent referral to a surgeon or urologist usuallyresulted in a biopsy. The diagnosis was based on, atminimum, one biopsy result. However, it was notunusual for the men to undergo more than one testand to wait for various lengths of time for a definitediagnosis.Hearing the definite diagnosis is a shock Participantsacknowledged that they were shocked and upset athearing the PCa diagnosis, even though they understoodthat tests were performed to detect the disease. They in-dicated feeling numb, overwhelmed, frightened, anduncertain about the future, questioning whether the re-sults were correct and why this had happened to them.Having little information about PCa causes uncer-tainty Many participants stated that they knew verylittle about PCa and its treatment at diagnosis. They didnot understand what caused the disease, their risk ofdeath, how the cancer was treated, what treatment op-tions were available, or the impact of various treatmentapproaches. Those who knew something about thedisease were drawing on experiences of family membersor friends. Essentially, they perceived cancer as a fatal ill-ness and experienced uncertainty about their situationand fear for their mortality.Being told it is your decision to make was surprisingMany participants were dismayed when they discoveredthat they had the final say on their treatment. They hadanticipated that the physician or surgeon would provideclear direction on which treatment option to pursue.They were surprised in the variety of options, feelingstartled and, to some extent, frustrated when theyrealized that they had a significant role in the decision-making instead of principally complying with the bestcourse of action from an expert. Many wondered onhow to make a good decision without adequateinformation.Theme: information is necessary on a number of topicsbefore a decision can be made about ASThe participants cited the need for information as a crit-ical element in making their decision about AS. Import-ant components included understanding the informationon a number of topics, searching for the information byoneself, and applying and detecting the relevant infor-mation to one’s own situation. Participants’ experiencesvaried across these components in terms of fulfillingtheir needs.Information is needed on PCa, treatment options,benefits, side effects and AS Participants listed a rangeof topics to comprehend before making an informed de-cision about AS. Understanding the disease, the variousoptions for treatment, and the anticipated outcomes andside effects of each option were commonly cited. Themen sought for knowledge of topics in general and anunderstanding of facts related to their own situation. Inparticular, they needed to understand AS and itsintended benefits. Most had not heard of AS and hadinitially interpreted it as doing nothing to combat afeared disease.There is a need to actively seek information Oncethey had learned their diagnosis, participants felt thatactively seeking information was critical for making aninformed decision. For some, this step came naturallywhereas others searched for information because theyTable 1 Participant CharacteristicsTreatment decision-making stage Number of participants(out of 52)Diagnosed with prostate cancer and presentlyunder active surveillance38Diagnosed with prostate cancer and withdrew from active surveillance-for reasons of disease progression-for reasons other than disease progression01Diagnosed with prostate cancer and decidedto undergo surgery or radiation at the beginning9Diagnosed with prostate cancer and currentlydeciding about treatment2Declined to provide data 2Fitch et al. BMC Urology  (2017) 17:98 Page 3 of 11Table 2 Representatives quotes from main theme content categoriesMain Theme Contributing content categories Illustrative quote examplesAn important decision is needed at atime of emotional upset and uncertaintyObtaining a definite diagnosis cantake timeI had a physical with my family physician and he ordereda PSA test. The test revealed a slightly higher level…I wasreferred. I think I went through a number of PSA tests andthey sort of bounced around, up and down, and eventuallyreached the stage where Dr. X concluded a biopsy was inorder. The first biopsy revealed, out of ten samples, thateight were OK and two were inconclusive. I think we didanother one or two PSA tests and it kept rising, whichresulted in another biopsy. And this time one of the samplesrevealed cancer.Hearing the definite diagnosis is ashockI felt I’d been hit by a truck.Why me? Why did this happen to me? And now? Whatdo I do?Having little information aboutprostate cancer causes uncertaintyIt’s amazing that you don’t really know about prostatecancer until you are diagnosed; like, why would I want toknow about it?I really didn’t know anything about prostate cancer or evenwhat the prostate was…I wasn’t sure what was going on.Being told it is your decision to makewas surprisingHe said, ‘You have to decide what you want to do.’ I was,like sort of, ‘You tell me what to do.’ You know? That’s whatI found difficult…he didn’t say, ‘You definitely need this orthat.’ He said, ‘Well, what did you decide?’ Me, I said, ‘Wellwhat are the choices? What would you recommend?...Whatwould you tell your brother?’Information is necessary on a number oftopics before a decision can be madeabout active surveillanceInformation is needed on prostatecancer, treatment options, expectedimpacts/benefits, side effects, andactive surveillanceFor example, I went into the biopsy without any idea whatI was going into…you should prepare people better forwhat’s ahead.I had not heard about active surveillance before at all…when I first got cancer, and before I read up on activesurveillance, I must admit, well, I thought I got cancer, getit out right away. What the hell am I doing walking aroundwith it? It never crossed my mind, I guess I never thought ofsomething growing so slowly that it’s not going to, it willnever effect you…but that’s what’s going through my minda lot now.There is a need to actively seek information The first thing I did when I got home was go on the Internet.You need to explore all the options so when push comesto shove and you need to cross that bridge, at least youare better armed to make an informed decision.I had really wished there had been a group like this that Icould sit down and talk about making decisions. I felt quiteisolated, that I had to go out and search for people.There is a need to check withdifferent sources of informationI talked with everyone I could. It felt like I had all the time Ineeded to make a decision, and that I could make the bestone for me. I just needed to know the options for me andthe possible impacts in my situation before I made it.I did a ton of reading and I spoke to a ton of people whohad had it. It didn’t confuse me but it didn’t necessarily helpme sort if all out.It is important to sort out whatinformation is relevant to theindividual’s own situationThere is a lot of information out there, but I do not knowhow accurate it is.I had to sort out what applied to me, to my disease andsituation. It was hard to know just from everything I readand had heard.Disease status and quality of life areimportant factors for men in decidingabout active surveillanceVarious factors are taken intoconsideration in making a finaldecision about active surveillanceI took it all into account [the doctor, the reading, talking tomy wife]…weighed all the facts, gathered my evidence, allthe information, and then made an informed decision.For me, it was a combination of factors…weighing themout and coming to a logical conclusion.Fitch et al. BMC Urology  (2017) 17:98 Page 4 of 11Table 2 Representatives quotes from main theme content categories (Continued)Main Theme Contributing content categories Illustrative quote examplesUnderstanding of the disease and potential for harm:• I was told it was small and low grade…a little level ofcancer.• They told me it is mild…and that the tumor cells areslow growing…it won’t likely get me before somethingelse.Understanding of active surveillance and potential forbenefit:• My first reaction to the concept [active surveillance],which came right at the beginning from the urologist,that’s really doing nothing. So I am not sure that’s theright thing to do…but he laid it all out…and as Iresearched it, and got into it, it is doing something. It’sactually monitoring in a quite regular basis. I gotcomfortable with that.• It’s not about doing nothing, you are doing something.You are monitoring and going to catch it in time if itgets bigger. I will have time to act.Side effects of treatment• If I could go another 10 years without an operation, I’dfeel good about that, about not having one. I’m 67 now.• I did a lot of reading and found a lot of negative thingsabout the surgery.Wanting to be rid of cancer• As soon as I found out that I got it, I thought, ‘Whatthe hell, I gotta get rid of this’ cause, you know, ineverybody’s mind cancer isn’t good for you.• I said, ‘If I got it, might as well get rid of it…get it overwith.’Past experiences with family/friends• I have a brother who is 15 years younger than me andhe had his prostate removed. His cancer was small too.But he couldn’t live with it…but I can. I’m 64. Maybe ifI was younger I’d have had it out too• My father had treatment for prostate cancer and his lifewas never the same again. I didn’t want that for me. Iam too young.Medical opinion• I had four doctors that have more or less indicated tome that it is not a major thing [to wait].• It was my doctor’s decision. But I was very relieved thatI did not have to go under the knife, you know.• I am beginning to fear surgery but, definitely, if thedoctors all said, ‘Listen, you’ve got to get it out’, I willdefinitely go for surgery when the time comes, if ithappens to come, I will do it.Age and health status• I have sort of decided that I am not going to doanything rash. I just turned 80 so it’s not as if I am inmy 50’s. So I decided the best thing is just to go throughwith it, to do the surveillance.• I was more or less on [the idea that] the less aggressiveform of action would be better for me right now…postpone as long as we can. Fifty-seven is too youngto go under the knife.• I am young, I can deal with it [surgery] now andrecovery will be quicker than if I wait and do somethingwhen I was in later years.Emotional toll over time• Any time you have a bit of an issue you would think,ah, maybe it’s because I have prostate cancer, so Idecided to get it out, taken care of at that time.• You have to learn to live with the fact you have cancer,at least a little bit of it, and that it may never get you.• I decided I don’t want to live with this [prostate cancer]anymore…I am tired. So, let’s do it [treatment].Fitch et al. BMC Urology  (2017) 17:98 Page 5 of 11Table 2 Representatives quotes from main theme content categories (Continued)Main Theme Contributing content categories Illustrative quote examplesFamily viewpoints• My wife said, ‘You need to be treated. I want you to behere.’ But for me, active surveillance sounded fine.• But my two daughters said, ‘Dad, don’t fool aroundwith it. Deal with it.’ There was family pressure. So Imade a decision to go with radiation, stop whatwas there.• My wife was involved too…it wasn’t just my decision.We are together on that…but she wanted me to betreated!Not enough information to decide• I have read so much and talked to a lot of people,and the information is really not clear. That’s why I amon active surveillance. I feel I don’t have all theinformation [to decide about treatment].Disease status is an importantconsideration/factor for menChoosing active surveillanceI have no symptoms…it is a very small cancer. It’s notaggressive. So I decided that was the course for me. I wouldtake active surveillance. I am not afraid of dying.At my age, there’s this notion that one could die before youdie of prostate cancer, you die of other causes.Staying on active surveillanceIt’s been 7 years and I feel fine…as long as my numbersare good, my exams are good, I am going to stay on activesurveillance.If I was ever going to have another biopsy, and there wereshown major changes in the amount of cancer in the biopsybits, and if the doctor suggested that well maybe we shouldconsider an operation, I mean that is the kind of informationyou want to hear to help you make a decision on it.Quality of life is an importantconsideration/factor for menChoosing active surveillance• I told him I am not interested in anything of [treatment].It’s about quality of life…I don’t have symptoms now, so Iam going to wait.• Treatment is scary, in terms of side effects on things…the side effects of the hormone drug I might have totake are huge. I think with radiation as well.Choosing treatment• If I live for another 35 years, I would like it to be a goodquality I don’t want to deal with cancer…me? I wouldjust do it [treatment]. So I said, ‘Don’t wait, let’s just do it.There is a need to balance what isimportant to youSome of these treatments have pretty drastic after effects,ah, you would have to live with them. So you have toweigh it all out.You sort of balance the things about invasive surgery, youknow, and what else is happening to your body from othercauses. If you are pretty healthy then you want to stay thatway. If it gets serious, then I will think of the alternatives.You kind of have to figure out what you need for survivingand what you need for quality of life. It just seemed to methat active surveillance gave me options. I did not have alot of disease and, who knows, if I wait for treatment untilI really need it, there could be other things available.Conversations with doctor(s) havesignificant influences on men in theirdecision-making about activesurveillanceConversations with doctors can behelpful or add to a patient’s distressI talked with the surgeon and really just had one optionoffered to me. I was not satisfied with that, I wanted tohave all of my options explained. So I went to anotherdoctor.To be frank with you, I had my GP tell me, ‘You know, it’s along term thing. Don’t worry about it’…he told me not toworry about it. So I am taking him at face value and I amnot overly concerned.So at this point, in talking with two urologists and aradiologist, I’ve decided, well, I think they helped me decide,that the thing to do was, ah, not to do anything too drasticbut to maintain surveillance of the growth.Fitch et al. BMC Urology  (2017) 17:98 Page 6 of 11wanted to confirm the information from their physiciansor felt that it was incomplete. Others wanted a secondor third opinion, input from other cancer patients, or as-sistance in understanding what they were reading. Acommonly held perspective was that one had to be self-reliant in educating themselves and could not solely relyupon the information received from health careprofessionals.There is a need to check with different sources of in-formation Participants utilized different sources fortheir information search and were generally encouragedto do so by their physicians. The internet was the mostcited resource, followed closely by the advice fromhealth care professionals, family members and friends.Men found it helpful when cancer centres provided in-formation packages or referrals to local PCa peer groups.Different sources offered input on different topics; whilesome provided factual information, others offered theopportunity for discussion, particularly among peerswho had been through a similar situation.It is important to sort out what information isrelevant to the individual’s situation Men expressedconcern about the reliability of information fromvarious sources, the amount of searching they had todo without guidance from health care professionals,the large amount of information available, and thewide variation in suggested treatment approaches forPCa. Participants expressed surprise and frustrationon the lack of agreement between treatment guide-lines and indicated the benefits of talking with aknowledgeable individual who could apply informa-tion that was specific to their own situation. Menfound it helpful in knowing that they could taketime to reflect on what they were learning and howit applied to them, and not feel pressured to makean immediate decision.Table 2 Representatives quotes from main theme content categories (Continued)Main Theme Contributing content categories Illustrative quote examplesI have to say I was a little apprehensive before I talked withDr. X and the radiologist…I was quite impressed becausethey were quite conservative in their approach. That kindof reinforced my thinking because I was a little bitapprehensive about going through any kind of radiationtreatment or something like that.There is no doubt about it, you turn to the physician anddepend on what he is telling you what is right for yoursituation. He can certainly sway you one way of the other.Confidence and trust are ofimportanceWhat persuaded me most was the reaction of the medicalstaff. They didn’t seem to be overly excited about thewhole thing.I talked with the first urologist and then with two otherdoctors, and I was sort of reassured. I mean I may needtreatment sometime, that may happen, but for the momentI’ve decided to do surveillanceHe has high credentials. So you know he knows what he isdoing…keeping up to date…pleasant....his reputation.Trusting the doctor is the answer.This guy has a way of talking with you. He explains. Heshows you…but he leaves you, it’s your decision.I listen to him. I have been with him for more than 11 years.I do what he says, he knows better than me.I listened to what the doctors had to say. There were slightvariations, but not much. There’s some consensus there.The ideal process from a patient’s perspectiveallows for tailored discussion and reflectionYou have to help people prepare for what they are headinginto.You need to give them an honest appraisal of their status.They can govern themselves…it is important that you letthem know it is mild and slow progressing...it is a differenttype of cancer.Dissemination of information is very important on a directbasis…you give as much information as you can.The person [who goes on active surveillance] wants toknow, if I go on this regime of just testing every so often,am I at risk? Will it get past the threshold of danger, younow, before we find out?...having time to act if somethingbegins to change, is there time to act? That’s critical. That’swhat makes action surveillance safe for us.Fitch et al. BMC Urology  (2017) 17:98 Page 7 of 11Theme: disease status and quality of life are importantfactors for men in deciding about ASDisease status and quality of life emerged as the mostimportant factors to consider in the decision for AS.Participants sought a wide range of information, butacknowledged that primary influences included thenature of their disease and the quality of life theywanted. These same factors applied for men who se-lected AS or those who elected to pursue interventionaltreatment, but the interpretation and application to aman’s situation varied. For example, age could be usedto argue for pursuing immediate surgery (e.g., recovermore quickly) or electing to wait (e.g., too young to livewith potential impotence).Various factors are taken into consideration for afinal decision about AS Participants described a rangeof factors they considered when deciding their course ofaction. These included understanding their disease andits treatment, their risk of death, AS and its intention,treatment side effects, age and health status (both nowand later), the desire to be cancer-free, medical opinion,past experiences with cancer, family perspectives, andthe emotional toll of living with cancer. Factors wereprioritized differently based on the individual’s life ex-perience and situation.Disease status is an important consideration/factorfor men Men considered their disease status as a keyfactor when selecting either a course of AS or interven-tional treatment. The type and size of tumor and risk fordeath from the cancer were significant pieces of infor-mation. Prior to their diagnosis, the participants had notunderstood that low grade or slow growing PCa did notrequire interventional treatment. Most had not heard ofAS and were introduced to the idea as an option for lowgrade disease by their physicians. Although someconfused interchangeably the terms ‘watchful waiting’,‘routine follow-up care’ post-surgery and AS, partici-pants described AS as appropriate for low grade disease;they understood the delay in treatment and its sideeffects while being closely monitored, and that interven-tional treatment was applied when it became necessary.Treatment was described as necessary if the diseaseprogressed and the physician indicated that action wasrequired. However, waiting offered the possibility of newtreatment approaches being available at a future date aswell as avoidance of an operation and disturbing sideeffects. Comfort with an AS approach was based on theidea of being closely monitored with reliable tests, andacting in a timely fashion when required.Quality of life is an important consideration/factorfor men The issue of side effects emerged prominentlyin discussions about quality of life. Both radiation andsurgery for PCa were seen as having significant side ef-fects with potential to impact a person’s relationships,sexuality, functioning, and emotional well-being. Avoid-ing side effects was seen as desirable by participants andfigured highly in their decision-making about AS. Oncethey were reassured that their health was not at greaterrisk on AS with access to treatment in a timely fashion ifrequired, men viewed AS as a preferred option. Thesubsequent challenge was living with the idea of cancerin their bodies and not dwelling on that fact on a dailybasis. Given that most of the participants were notexperiencing symptoms, avoiding side effects became aclear choice for quality of life.There is a need to balance what is important to youParticipants described how they came to realize that thedecision about treatment was largely their responsibility.However, this realization emerged only after seekinginformation and discussion with health care profes-sionals, family members and others. In the final analysis,they needed to identify and give due consideration towhat was important to them, and balance variousconsiderations for their life situation. In particular, themen reflected that the idea of AS was different from thepublic cancer messages about early diagnosis andprompt treatment. They, alongside family and friends,had to come to terms with understanding this difference.More often than not, family and friends were encour-aging the men to the treat the cancer.Theme: conversations with doctors have significantinfluences on men in their decision–making about ASAlmost without exception, participants spoke of conver-sations with doctors as significant for them and in theirdecision-making. Many men relied on the physician/sur-geon for clear direction on which treatment option topursue. This included helping them understand thebenefits and consequences of various treatments, andwhat the best approach would be for them, giventheir situation.Conversations with doctors can be helpful or add toa patient’s distress Participants described wide variationin the nature of conversations with physicians. Variationexisted in the duration of the conversations, the clarityof information provided, the personal care and concernthat was expressed, consistency of information from dif-ferent doctors, who was involved in the conversationalexchange, the number of treatment options and specificeffects discussed, and the active encouragement to seekother opinions. While some participants were entirelysatisfied with the exchange and felt well informed andsupported afterwards, others found these conversationsFitch et al. BMC Urology  (2017) 17:98 Page 8 of 11were less than helpful and experienced heightened frus-tration and uncertainty.Confidence and trust are of importance Participantsexpressed a high sense of confidence and trust in thephysicians and their viewpoints. For many, this confi-dence emerged from conversations held, the relevanceand clarity of the information provided by the physician,opportunities to openly question and discuss test resultsand options, and the attention paid to the men’s individ-ual preferences. For others, the confidence emergedfrom having known the doctor over many years orknowing the physician’s reputation.The ideal process from a patient’s perspective allowsfor tailored discussion and reflection Participantsreadily identified important characteristics of an idealprocess for holding conversations about AS. These in-cluded easy access to information, having time forconversational exchange, providing clear and honest in-formation, providing information relevant to the individ-ual’s situation, delivering the information with sensitivityand compassion, including family members, supportingthe conversation with written information, and providingreliable web-site addresses for personal follow-up.Clearly, participants viewed broad access to informationas an important feature, but emphasized that informa-tion should be tailored or applied to the individual’sparticular situation, preferences, and values. Access torelevant understandable information was of paramountimportance in assisting men with their decisions and inpreparing for what was ahead.DiscussionIn this qualitative study, a wide-ranging discussion aboutpatients’ decision-making process regarding AS showedthat selecting AS was not an isolated decision but in-volved the entire experience of confronting the reality ofhaving cancer.A number of participants’ perspectives have been re-ported previously: emotional upheaval at diagnosis andsurprise at the PSA elevation with no symptoms(reviewed in [10, 11]); lack of knowledge about PCaand its treatment, and lessening of anxiety once menunderstood more about their situation and availablechoices [12] (reviewed in [11, 13, 14]); influence of emo-tional anxiety on treatment decision-making [15, 16];variation in preferences for involvement in decision-making, including the desire of some men for a passiverole [17–19]; the need to search for information and thefrustration of searching on their own [19]; the need forsupport from others (reviewed in [20]); the participants’view about the significance of the physician’s role in thedecision-making process [12, 18, 19, 21, 22] (reviewed in[11, 13, 20]); and the differences in the provision of infor-mation from different cancer programs or providers [23].Unique to this study was the insight into the waysmen approached decision-making regarding AS. At theonset of their experience, they were unfamiliar with ASand following a course of AS ran counter to the men’soriginal preconceptions about cancer and treatment.They identified a need to shift their thinking about whatactions to take. Once men had relevant information,understood the actual degree of risk for themselves, andperceived the opportunity to avoid treatment sideeffects, some became more open to the idea of AS.Understanding that their disease was low risk, com-bined with the notion of avoiding treatment side effects,were strong incentives for those who opted for AS.Enduring treatment side effects was perceived as reducingtheir quality of life. This aligns with a questionnaire ana-lysis [15] and a study reporting analysis of internet conver-sations showing an increased awareness of quality of lifeand associated comfort with AS [24]. In contrast to partic-ipants in a reported phone survey analysis, patients fromour focus groups felt well-informed on the possible sideeffects of treatments [25]. They also emphasized the com-fort in being closely monitored, as reported in otherstudies [12, 21]. Close monitoring would allow for futuretreatment intervention in a timely fashion, if necessary.This idea was important for the men and contributed totheir ease in handling the sense of risk.For those who opted not to follow a course of AS,many talked about their capacity to undergo immediatetreatment, based on their age or physical status, or feel-ing a pressure to deal with the cancer, which emergedfrom their internal sense of risk from the disease or fromcommentary by family members. The desire to becancer-free or to reduce their risk or on-going worry, in-fluenced their final decision to pursue surgery or radi-ation treatment. These findings also aligned with otherrecent reports [12, 15, 21, 26, 27]. Anxiety was a reasonnot to adhere initially to AS but was also a factor thatinfluenced the decision for a radical treatment after aperiod of time on AS (reviewed in [20, 28]).Most participants consulted a number of individuals,either for information or for support, while decidingabout AS. Variation existed in whom they consulted,what input they sought, and the helpfulness of responsesthey received. In particular, family members and friendswere consulted frequently. However, they were often un-aware of PCa treatment options and had to adjust theirideas about the low risk nature of the disease, as did themen. Other health care professionals, including familyphysicians, were also consulted regarding AS. Partici-pants found that these practitioners did not always havethe necessary information on AS. Finally, a few men hadthe opportunity to meet with a support group for menFitch et al. BMC Urology  (2017) 17:98 Page 9 of 11diagnosed with PCa; those that attended meetings foundthe conversations with peers informative.Ultimately, the role of the physician in the decision-making process was significant to the participants; theyreferred to this person for advice and direction. Confi-dence and trust was engendered primarily through themanner in which conversations unfolded and the wayquestions were answered. Fundamentally, men soughtfor clarity in information and forthright conversationsabout their risks from PCa (now and in the future), andtime for discussion about their unique situation. Incon-sistency in information from one practitioner to another,or one treatment guideline to another, was distressingfor these men, as were hurried conversations withmedical technical language. These findings are in linewith those reported previously where the increasednumber of visits to the specialist rendered the treatmentdecision more difficult for men [25] and raised moreconcerns by patients in regards to the unbiased recom-mendation of treatment by their specialists [24].Implications for practice and future researchWith one exception (the Thunder Bay group), all focusgroups were held in metropolitan academic centreswhere PCa care was delivered within specialized clinicalprograms. Nonetheless, men identified variation in theiraccess to relevant, meaningful information about PCa,treatment options, and AS. This raises questions about theprocess for providing information to men and their familymembers and emphasizes the need for standardizationacross the country. Ultimately, the content should be clearand comprehensive, and the delivery should includemultiple types of formats and easy access. Where pos-sible, the opportunity to discuss the information inrelevance to an individual’s situation could be deemedvaluable to those interested.We isolated several factors that men took into consid-eration when deciding their PCa treatment. Conversa-tions with clinicians need to include dialogue aboutthese factors with as much clarity as possible. In particu-lar, tools for decision-making (i.e., decision boards)around AS could be designed and tested. This conceptwas assessed and deemed helpful by low risk PCapatients [29]. However, based on a systemic review, themajority of decision-aid tools are lacking important in-formation for PCa treatment decisions or do not providesufficient elements to favor shared decision-making byboth the patient and the health care provider (reviewedin [30–32]). Organizing the opportunity for more thanone conversation with time to make decisions wouldlikely be of benefit to men, and allow clarification offacts and anticipated implications of one course ofaction over another. Follow-up studies could include in-terrogating the universality of specific findings of ourqualitative study, using a more quantitative questionnaire-based approach, to more fully understand the patient-centered decision making process around activesurveillance.AcknowledgementsWe thank all participants who shared with us their experience with their PCajourney. We are grateful to Paula Sitarik, Lucie Hamel, Maureen Palmer, KathyLi, who generously provided their assistance during the study. We also thankJacqueline Chung for careful reading and editing of this manuscript.FundingThis research was part of the pan-Canadian initiative named the CanadianPCa Biomarker Network and funded by the Terry Fox Research Institute.Availability of data and materialsThe datasets used and/or analysed during the current study are availablefrom the corresponding author on reasonable request.Authors’ contributionsParticipate in the conception and initial design: FS, AMMM, SS, MF, VO.Participate in the acquisition: MF, KP, VO, CL, SC, DEC, AF, JBL, AS, ST, FS,AMMM Participate in the analysis and interpretation: MF, KP, VO, SA, FS,AMMM. Participate in the drafting and/or revision of the manuscript: MF, KP,VO, CL, SA, SC, DEC, AF, JBL, SS, AS, ST, FS, AMMM. All authors read andapproved the final manuscript.Ethics approval and consent to participateResearch ethics approval was obtained from each of the participating sitesincluding the Centre de recherche du centre hospitalier de l’Université deMontréal, the McGill University Health Centre, Cancer Care Manitoba, theUniversity Health Network and the University of British Columbia. All patientssigned an informed consent prior to participate in this study.Consent for publicationNACompeting interestsThe authors declare that they have no competing interests.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Author details1Sunnybrook Health Sciences Centre, 2075 Bayview Ave, Toronto, ON,Canada. 2Institut du cancer de Montréal and Centre de recherche du Centrehospitalier de l’Université de Montréal, 900 St Denis St, Montreal, QC, Canada.3McGill University and McGill University Health Centre, 1001 Decarie Blvd,Montreal, QC, Canada. 4University Health Network, 610 University Ave,Toronto, ON, Canada. 5Manitoba Prostate Centre, 675 McDermot Ave,Winnipeg, MB, Canada. 6Department of Surgery Université de Montréal, 2900Edouard Montpetit Blvd, Montreal, QC, Canada. 7Terrry Fox Research Institute,675 West 10th Avenue, Vancouver, BC, Canada. 8Vancouver Prostate Centre,2660 Oak St, Vancouver, BC, Canada. 9Department of Medicine, Université deMontréal, 2900 Edouard Montpetit Blvd, Montreal, QC, Canada.Received: 11 March 2017 Accepted: 24 October 2017References1. 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CA Cancer J Clin. 2015;65(3):239–51.•  We accept pre-submission inquiries •  Our selector tool helps you to find the most relevant journal•  We provide round the clock customer support •  Convenient online submission•  Thorough peer review•  Inclusion in PubMed and all major indexing services •  Maximum visibility for your researchSubmit your manuscript atwww.biomedcentral.com/submitSubmit your next manuscript to BioMed Central and we will help you at every step:Fitch et al. BMC Urology  (2017) 17:98 Page 11 of 11


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