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Describing perspectives of health care professionals on active surveillance for the management of prostate… Pang, Kittie; Fitch, Margaret; Ouellet, Veronique; Chevalier, Simone; Drachenberg, Darrel E; Finelli, Antonio; Lattouf, Jean-Baptiste; So, Alan; Sutcliffe, Simon; Tanguay, Simon; Saad, Fred; Mes-Masson, Anne-Marie Jun 8, 2018

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RESEARCH ARTICLE Open AccessDescribing perspectives of health careprofessionals on active surveillance for themanagement of prostate cancerKittie Pang1, Margaret Fitch2, Veronique Ouellet3, Simone Chevalier4, Darrel E. Drachenberg5, Antonio Finelli6,Jean-Baptiste Lattouf3,7, Alan So8, Simon Sutcliffe9, Simon Tanguay4, Fred Saad3,7,11*and Anne-Marie Mes-Masson3,10AbstractBackground: Over the last decade, active surveillance has proven to be a safe approach for patients with low-riskprostate cancer. Although active surveillance presents several advantages for both patients and the health caresystem, all eligible patients do not adopt this approach. Our goal was to evaluate the factors that influencephysicians to recommend active surveillance and the barriers that impact adherence to this approach.Methods: Focus groups (n = 5) were held with physicians who provided care for men with low-risk prostate cancerand had engaged in conversations with men and their families about active surveillance. The experience of healthcare professionals (HCPs) was captured to understand their decisions in proposing active surveillance and to revealthe barriers and facilitators that affect the adherence to this approach. A content analysis was performed on theverbatim transcripts from the sessions.Results: Although physicians agreed that active surveillance is a suitable approach for low-risk prostate cancerpatients, they were concerned about the rapidly evolving and non-standardized guidelines for patient follow-up. Theypointed out the need for additional tools to appropriately identify proper patients for whom active surveillance is thebest option. Urologists and radiation-oncologists were keen to collaborate with each other, but the role of generalpractitioner remained controversial once patients were referred to a specialist.Conclusions: Integration of more reliable tools and/or markers in addition to more specific guidelines for patientfollow-up would increase the confidence of both patients and physicians in the choice of active surveillance.Keywords: Active surveillance, Prostate cancer, Decision-making, Focus group, Low-risk diseaseBackgroundWidespread adoption of prostate-specific antigen(PSA)-based screening for prostate cancer (PCa) hasincreased the overtreatment of clinically indolent dis-ease, potentially causing more harm than benefit fromimmediate interventions [1]. Active surveillance (AS)has emerged as a safe primary management strategy toreduce the risk of overtreatment and associatedmorbidity [2]. Patients eligible for AS undergo continualrisk assessment over time until a radical intervention isneeded [3]. Despite the feasibility of AS, variability in ASuptake indicates that it is not utilized to its full potential.Moreover, variation in managing patients eligible for AShas been largely attributed to the physician and prac-tice patterns [4]. AS is a multifactorial-based decisionthat extends beyond disease characteristics and is crit-ically dependent upon the discussion between thepatient and the health care professional (HCP) whocan significantly influence the final decision [5, 6].However, even physicians who advocate AS reportbarriers in convincing patients of the merits of an ap-proach that defers treatment [7].* Correspondence: fred.saad@umontreal.ca3Institut du cancer de Montréal and Centre de recherche du Centrehospitalier de l’Université de Montréal, 900, St Denis St, Montréal, QC, Canada7Department 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). 2018 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.Pang et al. BMC Health Services Research  (2018) 18:430 https://doi.org/10.1186/s12913-018-3273-9This study was undertaken to gain a deeper under-standing of the perspectives of HCPs regarding AS andthe factors they perceive to influence men’s decision tofollow this treatment plan. The intention was to describethe emerging practices related to discussion with menabout AS. The AS approach is in conflict with the usualmessage promoted to the public of undergoing curativetreatment promptly following a cancer diagnosis, and isoften perceived as “doing nothing” during a time ofheightened emotional distress for men and their families,which can make new learning and decision-making diffi-cult [8]. Currently, the approaches used by clinicians toinform men and their family members about AS are notdefined. Recently, we reported that men required adetailed explanation on AS and its safety as well as guid-ance in their decision-making [8]. However, there is alack of standard training to provide HCPs with the sup-port to effectively counsel and advise patients on AS andhelp with their decision-making. Understanding the per-spectives of specialists and general practitioners (GPs),and the approaches they use to discuss with men andtheir families about AS may highlight barriers that pre-vent greater uptake of AS and identify areas forimproved discussion or communication/education.MethodsThe study used a qualitative descriptive design toachieve our aim to explore and describe an emergingphenomenon [9]. Focus groups (n = 5) were held withHCPs who provided care for men with PCa and en-gaged in regular conversations with men and theirfamilies about AS. Sessions were conducted in fourCanadian provinces within academic hospitals: Centrehospitalier de l’Université de Montréal (CHUM), theMcGill University Health Centre (MUHC), and theJewish General Hospital (JGH; participated via video-conference) in Quebec; University Health Network(UHN) in Ontario; Cancer Care in Manitoba; andVancouver Coastal Health Hospital (VCHH) in BritishColumbia. Within these centres, PCa care is deliveredby inter-professional teams in specialized clinical pro-grams and serve as regional referral centres. Toachieve a random sampling, invitation to participatein this study was sent via email to all specialists, fel-lows and medical students providing care or beingtrained to care for PCa patients within the studiedcentres. GPs who referred their patients to the specialistsof these centres were also invited via email. To accommo-date a physician’s schedule, focus groups were often inte-grated into regular multi-disciplinary disease/service-specific meetings. The focus group took place be-tween the years 2013 and 2015. Research ethics approvalwas obtained from each site and participants signed theirconsent to participate in this study.A qualitative researcher (M.F.) facilitated all focusgroup sessions. For the purpose of this study, a focusgroup guide (Additional file 1: Table S1) was developedthrough dialogue with the research team. The questionswere crafted to explore the following: participants’ viewsand their understanding regarding the definition of AS,the HCP’s current practice of presenting AS to men andtheir families, HCPs’ influences on proposing AS to pa-tients, and factors that influence men’s decision-makingabout adhering and pursuing AS. Most questions wereposed as open-ended queries, and probes were insertedonly for clarification of any comments made by partici-pants. Sessions were audiotaped and transcribed verba-tim for analysis.A conventional content analysis was performed on theverbatim transcripts in order to summarize and describethe various perspectives held by the focus group partici-pants [10]. Four team members (MF, KP, AMM, VO)read transcripts independently, taking marginal notesabout the content topics. Together, team membersdiscussed their perspectives about the topics in the tran-scripts, considered all identified content, and designed acontent-coding framework (i.e., topic list and definitions)based on the shared perspectives to achieve consensus.This coding framework is illustrated in Fig. 1. Twomembers (MF, KP) used the coding framework to codeall transcripts from the focus groups and individualinterviews using the NVivo software (V10.0 QSR Inter-national). The material coded within each of the categor-ies was reviewed in-depth, and the content wassummarized for each category with key messages orideas identified from the participants. The analysis wasthen presented to three other team members whoassessed the clarity and relevance of the findings (twoteam members had attended group sessions while theother was a clinician highly involved in interactions withmen considering AS). This group discussed the analysisand identified overarching ideas across all categories.The resulting consensus on the overarching ideas is thebasis for this report.ResultsThe results consist of the key ideas or perspectivesshared by the HCPs for each of the following contentareas: defining AS, current practices presenting AS topatients and their families, influences on proposing ASto patients, and thoughts about factors that influencemen’s decision-making about adhering and pursuing AS.Illustrative quotes are listed per content area in Table 1.Selected demographicsThe focus groups involved 48 HCP participants from sixdifferent academic centres and affiliated clinics andincluded GPs, urologists and radiation oncologistsPang et al. BMC Health Services Research  (2018) 18:430 Page 2 of 10(Table 2). Each session lasted between 60 to 90 min. Theaverage age of the participants was 44.6 years (range: 22to 78 years) and 85% were male. These demographicdata were self-reported by the HCPs on the demographicquestionnaire designed for the study.HCP perspectives on defining ASThe participants indicated that AS was an appropriateapproach for men with low-risk PCa. They understoodthat an AS program involved monitoring of the diseaseon a regular basis with the option for curative treatmentif required. AS was seen as providing an option to delayinterventional treatment with its inherent side effects,thereby improving patient care and quality of life. It wasperceived as the preferred approach for those with low-riskdisease and was different from ‘watchful waiting’. Theyagreed that the latter was used for patients with importantcomorbidities while AS was recognized as an approachWhat is ASDefinitionVs. Watchful WaitingNew PracticeGoalPractice of ASProtocolsCusto-mizingPracticing ChangingFine-TuningProposing ASPathology ResultsPersonalityAgeCo-morbidityPersonal Belief in ASConfidenceHaving the Conver-sationHow it happensWho gives itLanguage/ ContentPatient Education Rapport/TrustReferring to ColleagueRoles of HCPsFamily PhysiciansUrologistsRadiation OncologistsOtherEquipped for RoleWhat men wantWhat influences decisionAttitudes about TreatmentAttitudes about BiopsyAnxietyOver/Under TreatmentProtocolBiopsy Complica-tionsPlace patient in the right continuumPatient Adherence to ASConfidence in testPerson Centered CareConfidence in other HCPIdeal ApproachInter-professional Approach Certainty of ToolsStandard Approacha bc de fg hFig. 1 Schematic representation of the content-coding framework used for focus group sessions with health care professionals (HCPs) on activesurveillance (AS). Main topics: a) What is AS, b) Practice of AS, c) Proposing AS, d) Having the conversation, e) Role of HCPs, f) What men want, g)Anxiety, and h) Ideal approachPang et al. BMC Health Services Research  (2018) 18:430 Page 3 of 10Table 1 Illustrative quotesContent area Illustrative quotes from health care professionals (HCPs)HCP perspective defining AS ● When I think of Active Surveillance, I think the term describes the meaning quitethoroughly. So it’s a program of following a patient closely…with the intent to intervenewhen cure remains a possibility.● [AS is] the approach of choice when there is little disease, low PSA/Gleason scores, nosymptoms.● It’s a very grey disease. The trajectory is so long, it could be ten, fifteen years beforeoutcome change…I would be surprised you’d see any uniformity, in the way that this isdiscussed. The way we do it, I think everyone is clear of the standard. How it is done? I thinkit’s going to be very, very variable.HCP perspective on AS practice ● The problem is there’s no standard protocol.● Most of us most probably are not using the same protocol because we adjust for age, like[name] was saying. We sometimes adjust for other pathology; its core for 30 or 40% so I willbe more aggressive in doing the biopsy sooner, than the guy who has less than 5%, one ofone core, Gleason 6.● We really don’t have a very good biomarkers or even MRI that have proven to meeffective of even efficacious in finding progression.● Even PSA, you know, multiple groups, Hopkins, UCSF, have shown it is a horrible markerfor progression. So the only thing we have right now is, um, biopsy.● It’s difficult to understand with the protocol, when, um, there’s really no standardizepolicies that exists outside, you know. Each one publishes their own, but there’s no generalagreement of what an ideal protocol is. You are left each one in our guide to our ownbiases and their own uncertainty and… fear of the disease, you know how close to followthe patient or not.● And even the protocol at [hospital name] is changing…Even the ones that are doing themost Active Surveillance are constantly changing.● I think it’s changing year by year as well. So what we are doing now, it’s probably goingto be different to what we used to do 5 years ago● The first couple of years are the easiest part about surveillance. It’s when your practicematures and you are in 5, 10 years and they are sick of the biopsies and they are aware thatthe PSAs are not a good marker...● There’s a great deal of learning that we need to, to tap in here and understand about thisdisease. The transition from Active Surveillance to Watchful Waiting; the challenges of biopsyavoidance to biopsy morbidity…the big issues.Influences on proposing AS to patients and havingthe conversationFactors● PSA of...depending on the risk of patient... low to intermediate risk. PSA of 10 or less…Gleason of 3 plus 4 or less.● I think we look at the overall life expectancy, with the age, comorbidities…● Very much depend on the patient comfort, their psyche, their education, their willingnessto actually engage in that dialogue, in their care and um, a cookie cutter doesn’t fit all forsure.● You know, it’s so variable. You have to individualize, you have to get a sense of theperson, the people across the desk from you. You ask them. They have to know what theoptions are.Having the conversation● They will have to make it, really informed decision, and they are intelligent and they areeducated. I had a guy like that and it took an hour and a half of my time.● You are there to review their history with them and their journey to date. It possiblyreassures them. Changes in medical health, if they are telling me they are unwell, then I startbacking off.● Discussion is very important as is letting the man make his own decision/choice● The first thing I tell them it’s not a death penalty we are giving them...with this diagnosis.This is a disease that progresses over years and years. Treating it now, you might get cured,but you also get morbidities. And it is tradeoff between treating it now and treating it later.● It’s rare on the, um, first discussion to be actually conclusive. And I would give them somematerials to go home and read and they come back and finalize.● Patients understand…that we would change according to the follow up. Because if wewouldn’t change our attitude during the follow up, then why would we follow up?● And I also tell them that sometimes we, we decide to operate or give radiotherapy notbecause it is very scientific, because it’s not, but because patients change their minds.Patients vary in capacity and desire for information● Sometimes, these end up to be very complicated and convoluted conversations.Sometimes, they are very easy, it’s very straight forward, you just tell them, nope, no need todo anything, you know, come back in 6 months. Where they go, OK! Fine. See you. So it’sreally, very, very much individualized.● Most of the patients want to understand many of the things, but some just don’t. Somejust don’t have capacity and that’s fine too. It’s part of the understanding who you aretalking to and you know, how much information do they actually want? Because informationPang et al. BMC Health Services Research  (2018) 18:430 Page 4 of 10Table 1 Illustrative quotes (Continued)Content area Illustrative quotes from health care professionals (HCPs)overload is very bad as well. So you have to give it in a, presentable manner, withpresentable quality that they will respond positively and to understand. So it all depends.Challenges in conversations● I find it a most difficult conversation, is for the patient, is a marginal candidate for ActiveSurveillance…so where do you go with that one?● I mean in these patients, obviously somewhere in between and they are not greatcandidates for Active Surveillance, on the other hand, they are not…where does this belong,right?● Often times I find myself explaining things in order for the patient to understand in a verysimple manner, but how the disease behaves and we monitor is not simple at all. So I thinkthat’s a big limitation.● I think what is important from my perspective is that I agree with [doctor’s name] when Italk to the patient. Because when he hears there are two doctors that agree, that I tell himthat I agree with …whoever sends me the patient…We might disagree on a small, littledetails, or this and that. But basically I actually agree, we are saying the same thing. Andwhen they hear that, they relax.GP role● I would like us to kind of expand a little bit and educate family doctors because they are agreat support.● But mainly …we [GP] know…what prostate cancer is…after the shock of receiving thediagnoses, of course, I understand that they don’t…hear you anymore. So, we can alwaysmaybe give the special [talk] My patient would be very, very comfortable to see me on thatfront.● The family physician may be consulted by the man in the process of making a finaldecision: this latter discussion may be very personally focused as the family physician likelyknows the individual best; hence it is important that the family physician is aware of activesurveillance rationale and is able to explain clearly, and with comfort, why it is a viableoptionRole of other team members● We pretty much have the conversation at the same time as the urologist, because most ofour urologists send them to us [radiologist] upfront.● I always offer my patients to see the radiotherapist, or to see another urologists if theywant a second opinion.● We have a nurse that can take him on the side, talk to him about his diagnoses and makehim understand there are many prostate cancer and not only one type…she has more timetell him the pros and cons are and teach them every single way to treat.● Practice here at the Prostate Cancer Centre is that the man has the opportunity to talkwith all practitioners● A specialist in sexuality (nurse specialist) to talk to patients and their partnersIdeas for improving the conversation● We don’t have that nurse set up, which I think it’s valuable. Essentially what the patientneeds, it’s time.● Really to be a good communicator, have good rapport with patients, to actually learn howthe communication functions, what are the critical components of communication… is anincredibly valuable skill.● Here’s a group right in our center, and it the very first question they ask. For me, if I was aprostate cancer patient, I would like to know what other people in my community are doingright now. So I think every center should have a group for support…everything that theycould discuss with this patient. I think this will be important... It can help promote ActiveSurveillance.● Like the idea of identifying a reliable biomarker; would make it easier to talk with theindividual man (relevant information for him) about his risk for progressive disease● We wouldn’t be in this quandary until we have…be it genetic signature, or some sort ofnew protein biomarkers…● I think if you…change the philosophy of the medical community to have ActiveSurveillance as the default option, you know, that could improve…and you should justifywhy you should treat. Right now it’s the opposite. That would…change a lot how peopleembrace it and how often they get raised, you know and that kind of stuff.HCP perspectives about what men think/want ● Because their immediate reflex is, at least at my practice is, I have cancer why aren’t youremoving it?● So most young patients…all want some sort of treatment. And the patients that go onActive Surveillance are patients that are older, and both the patient and the physician areboth very comfortable that the cancer will not catch up with him, through the longevitythey have.● So there are times when active surveillance would have been appropriate but theindividual man wants treatment; we need to support their decision● Some men come with their minds already made up; they have a level of anxiety orconcern based on any number of factors (worry about side effects - particularly impotencePang et al. BMC Health Services Research  (2018) 18:430 Page 5 of 10that could prevent unnecessary treatment for clinically in-significant disease and possibly impact costs on the healthcare system. Illustrative quotes are listed in Table 1.HCP perspectives about current AS practiceParticipants mentioned that the protocols and practicesurrounding AS were changing rapidly. This contributedto challenges in following a protocol since agreed uponguidelines for practice have yet to be developed. Inaddition, participants expressed the view that once ASwas chosen by the patient, the decision was not seen asfinal. Adjustments could be made when needed duringthe patient’s clinical course, based on various factors orthe individual’s situation.Participants described the practice surrounding ASand its protocol as varied with differences between insti-tutions and often between specialists or GPs within thesame institution. It was noted that the short-term moni-toring was fairly consistent, but many participants foundit difficult to agree on a protocol for long-termfollow-up. They cited the lack of reliable biomarkers andtests, thus, leaving the biopsy as the only feasible testwhile less invasive but more costly MRIs were not avail-able across sites. Indistinct guidelines on the interpret-ation of test results were also a cause of confusionamong participants and patients, and contributed tovariation in practice.One significant change that specialists have observedsince the introduction of AS into practice was theincreased amount of time they spent with patients. Thistime was needed to ensure that proper patient educationhad been completed and that the patient understood hisvarious treatment options. Patients often returned totheir GPs for their opinions regarding treatment options.Some GPs reported they were uncomfortable in discuss-ing AS with patients due to lack of extensive under-standing on this treatment choice, while others feltequipped with AS knowledge and believed they couldhelp the patient to make an informed decision abouttheir treatment. GP participants welcomed the notion ofadditional education sessions to enhance their know-ledge on AS and believed it would improve their comfortlevel in speaking with their patients. Most participantsagreed that the practice will likely continue to change asnew tests and new tools are developed. Illustrativequotes are enumerated in Table 1.Factors influencing discussions about AS with patientsParticipants indicated that many factors influenced thespecialist’s decision to propose AS to patients (Table 1).However, all participants agreed that they relied heavilyon clinical-pathological results (i.e., Gleason Score, PSAblood level, etc.) to determine if AS is suitable for an in-dividual patient. Other factors that impacted their deci-sion to offer AS include the patient’s age, comfort levelwith the treatment decision, ability to cope, andco-morbidity; these were considered to greater orTable 1 Illustrative quotes (Continued)Content area Illustrative quotes from health care professionals (HCPs)and incontinence); worry about the cancer bringing about their death, a friend or otherfamily member had prostate cancer as well● The risk and benefit. I think that’s how the patients make their decisions. So, weight theircomfort level with the 5% risk, versus the benefit of avoiding complications.● I find that…the following 6 months, patients accept more of the idea of being treatedthan before the resistant…They change their mind.● The anxiety could be too high, knowing that they live with cancer.● They like the idea of not necessary being operated or treated with radiation. But the ideawith a biopsy, and then another and another biopsy...it’s not an idea that the patients like.● Most patients are asymptomatic, they are just going on with their lives, they are veryhappy. And, er, they don’t feel anything. So, unless you have a strong argument that theyshould be treated, they are very happy not to be treated. ‘Cause you are offering atreatment that is morbid, potentially morbid, versus, er, just being, staying as they are with afew appointments and maybe an unpleasant biopsy down the road.Table 2 Breakdown of participant’sa current role by provinceCurrent Role Quebecb Ontario Manitoba British Columbia Total %Urologist and Surgeons 10 6 3 4 23 48.9Radiation Oncologist 4 0 3 1 8 17.1General Practitioner 3 0 1 0 4 8.5Urology Fellow 2 2 0 1 5 10.6Resident 3 3 0 0 6 12.8aOne participant did not state his rolebIncludes both French and English institutionsPang et al. BMC Health Services Research  (2018) 18:430 Page 6 of 10lesser degree based on the descriptions of the partici-pants in this study. Most did not have a standardizedassessment for these factors but based their approachon their clinical acumen.Participants described PCa disease as a continuum:once AS was undertaken, adjustments could be made bythe clinician if some other health issues arose, or if thedisease progressed, or if the patient simply had a changeof mind. They saw a patient’s decision to choose AS atthe time of initial diagnosis as one that could be revis-ited and changed given new developments. The greatestconcern expressed by specialists was for candidateswhose clinical profile placed them at the higher risk endof eligibility for AS. They expressed a need for more cer-tainty about placing the patient at the correct point inthe disease spectrum and knowing exactly when actionwas needed based on changing clinical scenarios.Within the participating centres, the approach toinform men entailed several conversations with the pa-tient and his family, involving various HCPs includingurologists, radiation-oncologists and nurses, once theprimary HCP determined that AS could be appropriatefor the patient. Patients were also free to attend supportgroups for patients and survivors. There was no stand-ard approach across sites; the number of appointments,the people present during the conversation, topics cov-ered, and support materials provided varied from centreto centre as well as among practitioners within onecentre. All participants did not expect a decision ontreatment within the initial conversation, and instead,encouraged patients to take their time and inquire aboutthe various treatment options. Most comments reflectedthe view that patients should make the final decisionand emphasized that patients could take their time inmaking that decision due to the slow-growing nature oftheir disease.Each specialty (e.g., urology, radiation-oncology, gen-eral practice) plays a different role in the patient’s cancerjourney. Participants described their conversations withmen as very individualistic and dependent on their owninterpretation of the amount of information the patientwanted or needed to know. Based on examples providedby the participants, these conversations ranged fromcomplex and lengthy to very simple and brief, illustrat-ing the variation in approach. Patients were giveninformation about treatment approaches through con-versations and in printed materials. However, the sup-port material varied widely across sites. The majority ofspecialists in academic centres collaborated with eachother and felt comfortable in referring and leveragingexpertise from other practitioners, but observedchallenges in the consistency of messages given topatients by all providers. The GP’s role in the patientdecision-making process was also debated as somespecialists indicated that the GP’s role should end afterthe initial referral to the specialist, while others believedthat they were a great resource and support for the pa-tient on an on-going basis. Both specialists and GPsagreed that additional education would be beneficial forthe GP to confidently support the patient’sdecision-making. Participants thought there was roomfor improvement in holding conversations with menabout AS. The availability of other HCPs to augmenteducation and support groups to add support for menwere seen as beneficial. Additionally, the development ofreliable markers was seen as a priority.HCP perspectives about what men think/wantParticipants indicated that many factors influenced thepatient’s choice, adherence to and continuation of ASover time (Table 1). The factors playing an importantrole in helping patient’s make their decision includedage, personality, the tradeoff between treating now andtreating later or not at all, potential side effects, andfamily history. HCPs perceived that many patients pre-ferred to avoid treatment side effects and were contentto remain on an AS protocol as long as they experiencedfew to no symptoms. Participants reported that signs ofdisease progression, level of anxiety or a change of mind,and undergoing repeated biopsies were the primaryinfluences in patient’s withdrawal from AS over time.Repeated biopsies negatively impacted AS adherencedue to the discomfort experienced from the procedureand potential associated complications.DiscussionThis study was undertaken to understand the perspec-tives of specialists and GPs on the practice surroundingAS and associated discussions with men and their fam-ilies. The practice surrounding discussions about ASwith men and their families is still developing and hasthe potential to be challenging. Following a regime ofAS in some ways runs counter to the conventional mes-sage about interventional cancer treatment, and howbest to present AS information has yet to be described.This study offers a first step in understanding what chal-lenges exist in telling patients about AS.We examined the factors that influenced the HCP’sdecision as to who is offered AS and conversation pointswith patients and their family, all of which are para-mount to improving patient care and their overall qual-ity of life. Although specialists in the study agreed thatAS is the most appropriate approach for low-risk PCa,most acknowledged that the lack of standard AS proto-col was problematic, an observation already made in theliterature [11]. Histological upgrading from Gleasonscore 6 and above is generally an agreed trigger forintervention and PSA testing is included in mostPang et al. BMC Health Services Research  (2018) 18:430 Page 7 of 10programs but contributes more towards further diagnos-tic evaluation rather than as a predictor of intervention[11]. This appeared consistent with the views of some butnot all participants who did not value PSA as a reliablemarker. Participants also recognized that protocols weresubject to continual adaptation/change over the years andrequired an individualized approach. These changing ap-proaches can present a challenge in planning care for pa-tients and helping them understand what will happen.Currently, the physician’s recommendation has thebiggest influence on a patient’s decision to select AS[4, 8, 12]. Variation in AS management is frequentlyattributed to the physician’s perspectives, practice pat-terns, or abilities to effectively communicate the merits ofAS [13]. Despite their influential role, physicians receivelittle to no training in counseling patients on AS [7]. Inour study, the HCP’s assessment of the patient situationand characteristics drove the conversational approach, yetthere was little evidence of a formalized assessment forthese factors.Generally, participants did not use formal instru-ments or tools for assessing patient characteristics,but relied on clinical-pathological results for baselinecriteria, taking age, comorbidity, and the patient’s atti-tude towards treatment and their coping skills intoaccount. These additional factors have more influenceon individualizing care and more impact on the pa-tient’s selection for AS over radical treatment [4, 14].Our participants tended to be more reluctant to offerAS to younger patients, reflecting a prevailing percep-tion that men with a longer life expectancy havemore to lose by delaying curative action, despite en-during greater distress and a poorer quality of lifeafter treatment compared to older patients [4, 15].Participants also noted that the psychological charac-teristics of patients influenced their receptivity to-wards AS. This is in line with literature reportsconcluding that patients who are anxious or de-pressed have been reported to be more likely to selectradical treatment over AS [4, 16]. Most participantsreported a variation in considering all these factors.However, none of them applied systematicdecision-making approaches (i.e., decision boards) toassist patients in deciding a course of AS despite thefact that these tools gained favorable attention tocommunicate patient preferences, improve patient’sunderstanding of their disease, and reduce decisionalregret [12, 17].Once AS was proposed, some participants believedthat an inter-professional team conversation between theHCP, patient and their family was important to assistand support the decision-making. These teams could in-clude nurses, nurse practitioners, primary care providers,and peer support groups. Each of these constituencieswould likely offer different types of conversations formen and their partners. Consultation with relevant spe-cialists under a multidisciplinary model of care has beenshown to increase AS selection and satisfaction amongpatients and reduce bias toward the physician’s specialty[6, 18, 19].Allowing patients to take time for decision-makingwas highlighted among participants as important forgathering information and considering all options, whichwas also reported to increase the acceptance of AS [20].Moreover, men with longer intervals between diagnosisand AS enrollment appeared better adjusted, having hadthe time to understand the process and their disease,and develop better coping strategies [4]. Guidance to-wards AS should place greater emphasis on preservingoverall health, maintaining functionality and maintaininga quality of life that is at risk after immediate treatment[4]. Importantly, serial biopsies in AS protocols are alsoassociated with discomfort and serious complicationsthat can deter patients from adhering to the program, asnoted in our interviews.In our study, most participants agreed that the de-velopment of a standardized approach for AS wouldbe beneficial, given the current variations in terms ofprotocol, level of patient education materials,methods, and medical community philosophy on AS.Suggested elements that would optimize the AS ap-proach included increasing the accuracy of tests dur-ing diagnosis and monitoring to improve theidentification of low-risk cancers among all diag-nosed patients and reducing overtreatment. At thecore of successful AS programs is a strongpatient-physician relationship in which patient prefer-ences are recognized, and the risks and benefits of alltreatment options are explained clearly and under-stood by the patient. These insights derived from ourstudy will continue to narrow the information gapthat impedes greater AS uptake and contribute to thedesign of decision aids that will help shareddecision-making, improve patient’s understanding, andreduce decisional regret.Strength and limitationsOne of the strengths of our study is that focus groupsessions were held in several Canadian provinces wherehealth care systems are under provincial jurisdiction. Itprovides a portrait of factors influencing AS uptake bymen according to the HCP providing care. Although allprovinces were not included, results of this study pro-vide a solid base for developing a questionnaire to sur-vey a larger portion of HCPs in Canada. Capturing awider set of perspectives could draw on those of otherHCPs, physicians and surgeons who practice innon-academic centres and rural settings.Pang et al. BMC Health Services Research  (2018) 18:430 Page 8 of 10ConclusionIn this Canadian study, AS was seen as the preferredregimen for men with low-risk PCa. Evidence indicatesthat this approach can improve patient care and theirquality of life, and reduce overtreatment. Currently, vari-ous AS protocols are in place across Canada, with moreconsistent utilization during the initial years followingdiagnosis. Reliable and consistent tests are required toincrease the confidence of providing the right care planfor patients, especially those with test results placingthem close to the intermediate risk category. In keepingwith the notion of person-centered care, men requiretailored approaches to their surveillance and clear expla-nations to make informed decisions about following AS.There is also considerable appetite from both the HCPsand patients to find less invasive technologies to followdisease progression, and blood-based and imaging ap-proaches could further establish AS as the treatment ofchoice for men with low-risk disease.Additional fileAdditional file 1: Table S1. Focus group guide. General topics andprobe associated with each topic to discuss over the focus group session.(DOCX 15 kb)AbbreviationsAS: Active surveillance; GP: General practitioner; HCP: Health careprofessional; PCa: Prostate cancer; PSA: Prostate-specific antigenAcknowledgementsWe thank all participants who shared their experience in caring for patientswith PCa. We are grateful to Lucie Hamel, Kathy Li, Maureen Palmer, PaulaSitarik, who generously provided their assistance during the study. We thankJacqueline Chung for editing this manuscript.FundingThis research was part of a pan-Canadian initiative named the Canadian Pros-tate Biomarker Network and funded by the Terry Fox Research Institute.Availability of data and materialsData analyzed during the current study could not be shared in order topreserve participant anonymity.Authors’ contributionsParticipation in the conception and initial design: FS, AMMM, SS, MF, VO.Participation in the acquisition: MF, KP, VO, SC, DED, AF, JBL, AS, ST, FS,AMMM. Participation in the analysis and interpretation: MF, KP, VO, FS,AMMM. Participation in the drafting and/or revision of the manuscript: MF,KP, VO, SC, DED, AF, JBL, SS, AS, ST, FS, AMMM. All authors have read andapproved the manuscript.Competing interestThe authors declare that they have no competing interests.Ethics approval and consent to participateEthical Approval was granted by the institutional ethics committee at theindividual participating sites: the Centre de recherche du Centre hospitalierde l’Université de Montréal, the McGill University Health Centre, Cancer CareManitoba, the University Health Network and the University of BritishColumbia. All participants signed an informed consent before participating inthis study.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. 2Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON,Canada. 3Institut du cancer de Montréal and Centre de recherche du Centrehospitalier de l’Université de Montréal, 900, St Denis St, Montréal, QC,Canada. 4McGill University and McGill University Health Centre, 1001 DecarieBlvd, Montreal, QC, Canada. 5Manitoba Prostate Centre, 675 McDermot Ave,Winnipeg, MB, Canada. 6University Health Network, 610 University Ave,Toronto, ON, Canada. 7Department of Surgery Université de Montréal, 2900Edouard Montpetit Blvd, Montreal, QC, Canada. 8Vancouver Prostate Centre,2660 Oak St, Vancouver, BC, Canada. 9Terry Fox Research Institute, 675 West10th Avenue, Vancouver, BC, Canada. 10Department of Medicine, Universitéde Montréal, 2900 Edouard-Montpetit Blvd, Montreal, QC, Canada. 11U of MEndowed Chair in Prostate Cancer, University of Montreal Hospital Center(CHUM), Montreal Cancer Institute/CRCHUM, CHUM - Pavillon R, 900, rueSt-Denis, porte R10-464, Montréal, QC H2X 0A9, Canada.Received: 26 February 2018 Accepted: 4 June 2018References1. 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