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PRO-based follow-up as a means of self-management support – an interpretive description of the patient… Mejdahl, Caroline T; Schougaard, Liv M V; Hjollund, Niels H; Riiskjær, Erik; Thorne, Sally; Lomborg, Kirsten Sep 5, 2018

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RESEARCH Open AccessPRO-based follow-up as a means of self-management support – an interpretivedescription of the patient perspectiveCaroline Trillingsgaard Mejdahl1,2* , Liv Marit Valen Schougaard3, Niels Henrik Hjollund3,4, Erik Riiskjær5,Sally Thorne6 and Kirsten Lomborg2,7AbstractBackground: There is an increasing focus on the use of patient-reported outcome (PRO) measures to improve thequality and effectiveness of health care. PRO-based follow-up is a new model of service delivery, where thepatient’s PRO measures are used as the very basis for outpatient follow-up.Objectives: This study aimed to explore how patients with epilepsy experience the use of PRO-based follow-up inthree outpatient clinics in the Central Denmark Region. We also sought to explain how these experiences relate toself-management.Methods: Interpretive description was the methodological approach. We conducted in-depth individual interviewswith 29 patients referred to PRO-based follow-up, each of whom had completed at least two PRO questionnaires.Participants were sampled based on purposive and theoretical sampling.Results: PRO-based follow-up may support patients’ self-management by a) increasing awareness of psychosocialproblems, b) improving communication, c) increasing understanding of symptoms, d) facilitating change in healthbehavior and e) strengthening autonomy. Inhibitors for PRO measures as a means of self-management support wereidentified as a) feelings of rejection and disconnection, b) incomprehension of purpose of PRO-based follow-up, c) PROmeasures being too standardized and negative and d) lack of confidence in own ability to assess PRO questionnaires.Conclusion: The findings demonstrate broad variation in the influences of PRO measures on patient’s self-managementin life with epilepsy. Sense of ownership may explain this variation. We suggest supplementary clinical initiatives in orderto enhance the benefits from PRO-based follow-up, particularly on how patients are allocated to this health care service.BackgroundThere is an increasing focus on the use of patient-reportedoutcome (PRO) measures to improve the quality and effect-iveness of health care [1]. PRO is a measurement based ona report that comes directly from the patient about the sta-tus of that patient’s health condition [2]. In Denmark, since2016, PRO-systems are being implemented on a large scale,based on national initiatives [3]. However, we know littleabout what happens when ideas on a macro level hit theclinical practice arena [4].What we know is that PROs have potential for allowingpatients to actively participate in their own care [5–7].Studies indicate that management of symptoms may be im-proved by the use of PRO measures in clinical practice andincrease symptom-related actions by both patients and cli-nicians [8, 9]. A number of studies suggest that the use ofPRO measures in clinical practice can improve patient-clin-ician communication, given that PRO data can be an incen-tive to patient-centred communication [10–14]. Asystematic review of the impact of routine collection ofPRO data found strong evidence that well-implementedPRO measures improved patient-provider communicationand patient satisfaction but found only weak evidence forthe impact of PRO measures on changes regarding patients’self- management, health outcomes and health behavior [10].* Correspondence: carmej@rm.dk1Department of Public Health, Aarhus University, Bartholins Allé 2, DK-8000Aarhus, Denmark2The Research Program in Patient Involvement, Aarhus University Hospital,Palle Juul-Jensens Boulevard 99, DK-8200 Aarhus, DenmarkFull list of author information is available at the end of the article   Journal of Patient-Reported Outcomes© 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.Mejdahl et al. Journal of Patient-Reported Outcomes  (2018) 2:38 https://doi.org/10.1186/s41687-018-0067-0The patient perspective has received little considerationwhen it comes to PRO measures in routine clinical prac-tice and as a means of self-management support. In spiteof the promising benefits, research has also emphasizedthat PRO measures cannot be considered a self-actingmechanism that necessarily leads to patient involvement[7, 15]. Specifically, a systematic review of the experiencesof professionals’ use of PRO data to improve the quality ofhealth care documented barriers to implementing PROmeasures such as skepticism about the validity of patientself-reported data and preferences for physiological mea-surements [6]. Thus, a series of conditions and mecha-nisms may influence the use of PRO measures in clinicalpractice as a method for self-management support.Self-management is defined as “the individual’s abilityto manage symptoms, treatment, physical and psycho-social consequences and life style changes inherent inlife with long term conditions” [16]. As the lives of pa-tients with epilepsy not only include endurance of a pre-disposition to generate epileptic seizures but alsoneurobiological, cognitive, psychological and social con-sequences of this condition [17], we considered epilepsyto be an appropriate case exemplar for this study.We aimed at exploring how patients with epilepsy ex-perience PRO-based follow-up used in three outpatientclinics in the Central Denmark Region, where PRO data isused as the basis for demand driven outpatient follow-up.We also sought to explain how these experiences relatedto self-management in PRO-based follow-up.MethodsInterpretive descriptionWe chose Interpretive Description (ID) [18] as themethodological approach. ID is an applied, inductive re-search strategy stressing the importance of conductingresearch arising from and with the aim of improvingclinical practice [18]. ID differs from other methodolo-gies as it draws on elements derived from phenomen-ology, grounded theory and ethnography but refrainsfrom formalizing specific techniques and procedures asultimate standards and goals of research [18]. Thus, IDdoes not prescribe an exact way to carry out the study,but rather represents an operating logic within whichqualitative studies can be designed and enacted [18]. Inaccordance with ID we gathered and analyzed data con-currently, and thus let the preliminary data analysisguide the subsequent data collection. Preliminary ana-lyses were noted in an audit trail throughout the re-search process to provide transparency.SettingAmbuFlex is a generic web-administered PRO-systemwhich aims to improve quality of care, increase thepatient-centeredness of care, and reallocate health careresources by using PRO measures as the basis forfollow-up [19, 20]. This is termed PRO-based follow-up.Thus, AmbuFlex differs from the traditional use of PROmeasures in clinical practice, where PRO measures oftenjust compose a supplement to the patient’s follow-up.PRO-based follow-up represents a new model of servicedelivery where the patient’s PRO measures are used asthe very basis for outpatient follow-up. In PRO-basedfollow-up, regularly scheduled follow-ups are substitutedwith regular diagnosis-specific questionnaires filled in bythe patient at home. The patients’ PRO-data are used byclinicians as a decision aid to identify those who needclinical attention based on an automated PRO-algorithm[21]. The patients can in all cases request a contact andthereby overrule any automated decision of no visitneeded.AmbuFlex/Epilepsy was implemented in 2012 in threedifferent hospitals in The Central Denmark Region, andis standard follow-up for approximately 70% of all epi-lepsy outpatients in these clinics [20]. As of December2017, 5181 epilepsy outpatients have been referred toAmbuFlex/Epilepsy, based on a clinical assessment ofthe patient’s health status and their ability to fill in ques-tionnaires. The questionnaire encompasses informationabout health-related quality of life, seizures, other symp-toms, information specific to aspects of daily life withepilepsy and the patient’s perception of well-being (Add-itional file 1). At the time of the data collection patientswere not able to access their PRO measures once theyhad submitted their response, thus the patient’s PROmeasures were only fed back to the clinicians.Sampling and data collectionData collection was conducted by the first author and con-sisted of in-depth semi-structured interviews with 29 pa-tients (Table 1). Interviews were conducted from December2015 to June 2017 and were carried out in the patients’home, except three interviews which, on patients’ requests,took place at the hospital. The inclusion criteria were pa-tients referred to AmbuFlex/Epilepsy who had completedat least two PRO questionnaires. Using general questionsand prompts designed to release patient narratives, partici-pants were invited to share their personal experiences ofAmbuFlex. The sampling was planned as purposive. Priorto the interviews we aimed to include patients representinga diversity in duration of epilepsy, gender and age. In ac-cordance with the ID strategy of maximal variation associ-ated with an evolving analysis, we supplemented ourpurposive sampling strategy with theoretical sampling [18].Thus, when hunches about patterns and themes emergedduring data collection and analysis, we sought to includespecific types of participants to check if what we saw wasan artifact of some unexplained characteristics of ourcurrent sample. For example, in the preliminary analysis weMejdahl et al. Journal of Patient-Reported Outcomes  (2018) 2:38 Page 2 of 9found great differences in patients’ experiences of feelingsafe or abandoned in PRO-based follow-up. To be sure thatthese experiences could not be ascribed to patients’ estab-lished relation (or the lack of such) with the clinicians, wesampled participants with no or only minimal follow-up ex-periences prior to their enrolment into PRO-basedfollow-up. A diversity of experiences related to feeling safeor abandoned was identified amongst these participants,thus theoretical sampling helped us refine our claim aboutcontrasting experiences. Although we had initially antici-pated that a sample of 15–20 participants would be suffi-cient to yield thematic patterns within the dataset, thevarious nature of the documented experiences led us tocontinue recruitment. After 29 interviews had been com-pleted, we concluded that sufficient common aspects wereapparent in the dataset and the thematic patterns were suf-ficiently substantial to permit a comprehensive conceptualdescription of the whole.AnalysisAll interviews were audio-recorded and transcribed ver-batim by the first author. Data management was facili-tated by the qualitative software program NVivo™ [22].In accordance with ID concurrent data collection andanalysis were performed [18]. Thus, preliminary analysisof the data influenced the consequent data collection.For example, an initial analysis revealed signs that somepatients made different lifestyle choices due to PRO-based follow-up. Thus, a focus on PRO measures’ influ-ence on health behavior was incorporated into the inter-view guide.The first author conducted the initial rounds of ana-lysis identifying patterns and subsequently themes,which were discussed and adjusted in close cooperationwith the last author supported by discussions withco-authors. Once all data was gathered we conductedthe final analysis with the first author being responsibleof digging into the full data material. After carefully hav-ing read all the transcripts we organized data segmentstogether that seemed to reflect similar properties, in-creasingly arranging the data in terms of patterns. Next,more formal coding was conducted, starting with abroad-based coding in order to avoid premature inter-pretations. As our data was organized in groups thatmight be thematically related, the specific dimensions ofpatients’ experiences were increasingly clustered into re-curring themes. These tentative groupings allowed us toconsider the patterns and variety within those groupsacross the whole material. As the analysis process devel-oped and possible relationships between the groups ofdata became more apparent, we could finallyconceptualize the findings by extracting thematic pat-terns that represent the potential of PRO-based followup as a means of self-management support.ResultsPotential participants were identified and approached bynurses from the three outpatient clinics and all agreed toparticipant in the interview, thus the final sample con-sisted of the 29 contacted patients (Table 1).In general, our analysis revealed diverging attitudes to-ward PRO-based follow-up. For some patients, PRO-based follow-up was perceived as a quality improvementof the outpatient service. In particular, they valued theincreased influence they could have on their follow-up.For other patients, PRO-based follow-up was experi-enced as a deterioration of the outpatient service. Wefound considerable variation in the influence of PRO-based follow-up on capacity for self-management. Forsome patients, signs that PRO measures were increasingtheir self-management capacity were clear. For others,we found equally clear indications that the procedurewas impeding their follow-up experience and contactwith the outpatient clinic. These contrasting experiencescould explain both the supportive and inhibiting mecha-nisms relative to self-management. In representing expe-riences from opposite sides of a spectrum that coverssignificant variation in the documented experiences re-garding PRO-based follow-up as a means of self-man-agement support, the observed complexities can beilluminated. Illustrative quotations appear in Table 2.Table 1 Participant profileN = 29 (%)GenderFemale 15 (52)Male 14 (48)Age20–35 10 (34)36–50 4 (14)51–65 7 (24)> 65 8 (28)Duration of epilepsy (years)< 5 2 (7)6–15 9 (31)16–30 10 (35)31–45 5 (17)> 45 3 (10)CohabitationLiving with a partner 24 (83)Living alone 5 (17)Occupational statusWorking 16 (55)Not working 13 (45)Mejdahl et al. Journal of Patient-Reported Outcomes  (2018) 2:38 Page 3 of 9Table 2 Examples of participants’ quotesSupporting mechanismsIncreasing awareness ofpsychosocial problemsAt least the questionnaire is moreprofound than the usual how-are-you-questions. It seems as if theytake you a bit more seriously nowthan they did before (68 years oldman).ImprovingcommunicationWell, I think it is very nice. Thequestions are much more everydayquestions. That makes it mucheasier to explain and describe howyour epilepsy actually is. Becauseyou try and you try to explain howit is and how it feels to your closeones and to the doctors, but it isso hard to explain in a way thatnormal people can imagine howyour body experiences it (28 yearold woman).Increasing understandingof symptoms and diseaseIt gets you thinking. It makes youconsider things. Because I actuallydidn’t know that you could loseyour sexual drive because of themedicine and that stuff. I surelydidn’t know that before I saw thequestionnaire (56 year old woman).Before I start to fill it in, I stop andthink carefully about why thequestions are there in the first place.They must be linked to the epilepsy.It isn’t like you have to find five errors[as in an intelligence test] or somethinglike that. So, all the questions musthave something to do with theepilepsy, right? And that makes youaware of symptoms that you must beattentive to (60 year old man).Facilitating change inhealth behaviorThere are things you do that you don’tlink to the epilepsy by yourselves, butthey can actually have an influence.So, in that way it can actually kind ofguide you. [For example], maybe Ishould try and sleep a bit longer(28 year old woman).I actually think that just filling in thequestionnaire and just by ticking thoseboxes made me more conscious, andthen I said to myself “okay now I needto take on responsibility, because it ismy life.” (48 year old man).Strengthening autonomy,flexibility and freedomI really think it is very very goodalternative. I especially appreciate thefact that I actually get to control itmyself (…). I really like the part thatI can control my follow-up by saying“Do you know what? Now I need help.”(24 year old woman).I actually think it is all right [the factthat there is no routine visit anymore].Because, I really don’t feel that I sufferfrom epilepsy. I actually don’t feel likethat. I feel well in my everyday life,so I kind of forget that I have epilepsy.And sometimes I try to tell myself,that it is just something that they havemade up. I don’t like the epilepsy, andthis makes me feel less ill (66 year old man).Table 2 Examples of participants’ quotes (Continued)Inhibitors for self-managementInducing feelings of rejectionand disconnectionWhen you write that you have lostyour libidoand you have gained weight, thenwhat happens? Well, if I had beensitting in front of the nurse, then Iwould expect that she maybe couldhelp me in some way (…) But if I justwrite it in thequestionnaire, then what happens? –Nothing. Because I have never heardanything back, and I have beenwriting these things time after time(56 year old woman).I demand to know how my disease isdeveloping! I want to know, is it okay?I would also like to have the possibilityto ask some questions (…) I wouldreally like to have the opportunity totell how I feel and how I experiencethe side effects, and I don’t think thatI have those opportunities now (23year old woman).They never [expletive] react to it. So,I wonder, why do they ask about it inthe first place? Honestly, why do theyask? Well, they don’t care about itat all. The only thing they react tois the medicine stuff. Why the[expletive] should I fill it in, then?It is nothing but a waste of time(58 year old woman).But I really think they ought to reactto it - to follow up on the problems.Otherwise it is just like you disappear(47 year old woman).You somehow feel that you areabandoned from the system whenyou only have this [lays his handon the questionnaire] (60 year oldman).Incomprehension ofpurpose of PRO-basedfollow-upIt is a survey. (…) I see it as some kindof data collection, a method for somenurses and doctors to become smarteron the disease (63 year old man).Well, they can’t use my part in itself. Ithink it is more in general that theyuse it. To see if people who take thesemedicines and who have epilepsy, tosee if they have a direction, I think. So,I don’t think, that they use exactly myquestionnaire, except as one in many(32 year old man).PRO measures areperceived as being toostandardized andnegativeBut I really don’t think all thosethings have anything to do with howI have epilepsy (23 year old woman).There are questions or areas that Ipersonally think the questionnaire islacking (…) In that way it can bedifficult to fill it in, because I don’tthink it fits 100% to my person(39 year old man).P: It is terrible, just terrible. Honestly,I must say, it is terrible to fill in.Because I don’t want to have anythingto do with it any more.I: Do the questionnaire remind you ofyour epilepsy?Mejdahl et al. Journal of Patient-Reported Outcomes  (2018) 2:38 Page 4 of 9Supportive mechanismsIncreasing awareness of psychosocial problemsOn account of PRO questions related to wellbeing andeveryday life, patients who experienced the process favorablyreported it as having a positive focus on psychosocial prob-lems. These ‘soft’ questions were interpreted as a signal fromthe outpatient clinic that these were important areas for con-sideration and that the clinicians were interested in thewhole person, not just the medical management. These pa-tients thought of PRO-based follow-up as more personaland profound than the traditional follow-up, because previ-ously the consultation focus was always limited to informa-tion about medicines and seizures. In addition, thecomprehensive questionnaire and the weighting of the pa-tient’s view and opinion on their own health status wereunderstood as the clinicians taking patients more seriously.This awareness about potential psychosocial problems wasvalued by these patients and could potentially make it easierto handle psychosocial impact of epilepsy on everyday life.Improving communicationPRO-based follow-up also resulted in an experience ofimproved communication for many patients. They statedthat it provided them with a disease-specific vocabularythat allowed them to explain to the clinicians and totheir relatives how they felt, and what it was like to livewith epilepsy. They felt that the questionnaire promptedthem to discuss psychosocial issues in relation to thedisease with their relatives. These patients also foundthat the questionnaire ‘allowed’ them to initiate discus-sions with clinicians concerning problems like sadness,anxiety or problems with sexuality. Thus, PRO measureswere perceived as a legitimization of conversations on arange of topics they might otherwise have avoided.Increasing understanding of symptoms and diseaseThis group of patients felt that the PRO questionnairecould give rise to personal reflection. When reflectingon symptoms, they became more aware about the linkbetween specific symptoms and the disease process,which resulted in a better understanding of the diseaseand its manifestations. Filling in the questionnaire madeit easier for them to assess their need for contact, be-cause PRO measures gave them a good understanding oftheir health status. The PRO questions could also clarifythat epilepsy is an aspect in their everyday life and thusnot restricted to seizures and medicine. In this manner,they reported that filling in the PRO questionnaire couldlead to an increased acceptance and sense of security,because now they could legitimately relate their symp-toms to epilepsy.Facilitating change in health behaviorFilling in the PRO questionnaire further prompted someto take stock of their way of living with epilepsy. It madethem pause to think carefully about the way in whichtheir epilepsy was developing and reflect on theirhealth-related actions. Thus, PRO measures gave rise toreflection and the reflection then led to acting differentlywhen it came to sleeping patterns, dietary habits, medi-cation management and alcohol intake. Many of the pa-tients therefore felt it resulted in making differentchoices, choices that were more in line with recommen-dations from the outpatient clinics regarding health be-havior and epilepsy. Thus, the PRO-based follow-upmediated processes by which some patients believedthey were handling the epilepsy in a healthier way.Strengthening autonomy, flexibility and freedomMany patients valued assessing their own health statusand need for contact, as it gave them a feeling of beingin charge and a positive feeling of taking responsibilityfor their own disease. They appreciated the fact that theywere given a choice as to whether or not they wanted aconsultation. In this way, the PRO-based follow-upstrengthened their autonomy, as it provided them withan actual influence on their follow-up. In addition, theTable 2 Examples of participants’ quotes (Continued)P: Yes, it does, and the fact that ithas been much worse, and it makeme think; what if it gets worse again?(…) I really feel like they startto pull something up, and forsome of the questions I think;why is it their concern? (67 yearold woman).There are so many negative questions,so many around depression and suicidethoughts and that sort of stuff. It is verynegative. And I think; what shall I do withthat? Because I didn’t think I had thosetroubles, but when they are presented inthat way in questionnaire, you actuallycome to be a bit negative yourself(32 year old man).Lack of confidence inown ability to assesshealth status and needof contactWho is to say that I’m right in myresponses? (26 year old woman).Well, we are not supposed to be doctors,we are not supposed to assess our ownhealth, because there are some peoplewho are professionally educated to dothat (39 year old man).It is hard to assess, because do I have aneed to be contacted? Well, it is reallydifficult to assess, because I’m not theexpert in this game (60 year old man).I thought to myself; well, is this really aproper reason for asking for contact.Because you do know that there is aneed for cost-savings, so I wouldn’twant to intrude or be demanding.So, I feel that there must really be aproper reason, but you can be veryinsecure if the reason is proper enough,and that is hard. (26 year old woman).Mejdahl et al. Journal of Patient-Reported Outcomes  (2018) 2:38 Page 5 of 9fact that there were no routine consultations any morewas highly valued, as it made follow-up more flexible.This flexibility had an impact on the patient’s everydaylife, including work life. When they were no longer obli-gated to come to a routine visit, they reported that theyfelt less ill. They did not have to arrange to get off fromwork because they could fill in the questionnaire when-ever it best suited them, and that gave them a sense offlexibility and freedom. The strengthened autonomy andthe increased sense of flexibility and freedom signifiedthat the epilepsy had to some extent faded into the back-ground, and allowed their ‘patient identity’ to becomeless dominant.Inhibiting mechanismsInducing feelings of rejection and disconnectionA substantial barrier for PRO-based follow-up to sup-port self-management for some of the patients in thisstudy was an experience of feeling intercepted by the ap-proach and therefore rejected by the health care systemand the clinicians. For the most part, the experience as-sociated with this rejection was lack of response. Eventhough these patients had stated problems in the PROquestionnaire, some reported that they had not receiveda response. Because questions were posed about well-being and problems such as with sexuality, they ex-pected a response if they had indicated a problem inthese areas. In such instances, they often found that theresponse given to their PRO data was overly superficial.As a result, they developed the clear conception that itwas only those PRO measures that were related to sei-zures or medicine that the clinicians would respond to,and were thus convinced that different PRO questionsrank differently. When these patients experienced no re-sponse to the problems they reported, their motivationfor filling in the PRO measures decreased. Lack of re-sponse or the experience of a superficial response couldleave such patients with a feeling of being abandonedand alone. In this way, they concluded that thePRO-based follow-up had intercepted their capacity tobenefit from the expert and the experts’ assessment ofthe disease.Incomprehension of the purpose of PRO-based follow-upAnother barrier some patients reported occurred in situ-ations in which they missed or misunderstood the pur-pose of PRO-based follow-up. Some thought of thequestionnaire strictly as the clinician’s work tool to col-lect data or as a cost saving tool for the healthcare sys-tem. They were not even aware that their PRO datawere handled individually, and thought of the question-naire as a survey for research purposes. Furthermore,when the questions made no sense, or patients couldnot see the link between the questions and the epilepsy,they wondered why the clinicians wanted informationon all these areas.PRO measures are too standardized and negativeSeveral patients pointed out that the PRO measures didnot reflect the way their own epilepsy was manifest. Insuch situations, patients could not recognize themselvesin the questionnaire. They found it too standardized andrigid and therefore demanded better possibilities to elab-orate upon their answers. Thus, some of these patientsfound that the PRO measures restricted their communi-cation about their epilepsy with the clinicians, as thequestionnaire only allowed for patients to communicateon certain issues. In some instances, PRO measures wereseen as a painful reminder of the severity of the disease.Certain questions in the PRO questionnaire, such aswhether they had considered suicide, made some pa-tients worry about what the future might bring. Thesepatients emphasized that such questions were very nega-tive, and explained that such questions negatively influ-enced their mood. Where they felt that the questionswere particularly intrusive, some patients reported fillingout the answers in a superficial manner in order to avoidfeeling uncomfortable.Lack of confidence in own ability to assess health statusand need of contactSome patients found it difficult to fill in the PRO ques-tionnaire because they had a hard time distinguishingbetween symptoms related to epilepsy and more generalsymptoms or sensations. Where they lacked confidencein their own ability to assess their symptoms and healthstatus, these patients emphasized that they had beengiven too much responsibility, and that made them feelinsecure and unsafe. Several reported that they wouldprefer the clinicians doing the assessment. Furthermore,some found it difficult to assess their own need for con-tact, given that they did not see themselves as experts.Some also found it hard to request a contact if they hadnot stated any problems in the PRO measures. In thismanner, patients had a clear sense of a PRO hierarchy,in that not all PRO questions legitimized a wish for con-tact. For the most part, questions related to seizures ormedicine were viewed as more important than questionsrelated to psychosocial problems.Sense of ownershipIn searching for possible understandings of the conditionsunder which inhibiting and supporting mechanisms arose,we propose a sense of ownership towards PRO-basedfollow-up as a possible explanatory mechanism (Fig. 1).When we looked at cases in which PRO measures’ sup-porting mechanisms had been realized and in those inwhich the experiences were negative, we could see aMejdahl et al. Journal of Patient-Reported Outcomes  (2018) 2:38 Page 6 of 9difference in terms of the active agency of the patient inengaging with the system. Patients for whom thePRO-based follow-up seemed to increase their capacityfor self-management were, for example, more likely to usepossessive pronouns when they were referring to the PROmeasures or the follow-up. Furthermore, these patientswere more likely to express positive reflections regardingtheir role in the follow-up, and they described themselvesas feeling comfortable with making the active choice re-garding need for contact. Other patients, on the contrary,seemed to verbally distance themselves from PRO-basedfollow-up by emphasizing that it was the clinicians’ worktool, not their own. These patients furthermore tended tofocus on what the healthcare system gained fromPRO-based follow-up. In those cases, the patients tendedto express experiences of PRO-based follow-up as a rigidand simplistic system, with no room for influence. Giventhat we interpret these differences in the active agency asrelated to differences in sense of ownership towardsPRO-based follow-up, it seemed that ownership towardsPRO-based follow-up created the conditions under whichsupporting mechanisms for self-management develop-ment could be realized.DiscussionIn this interpretive description study we found signs ofPRO-based follow-up leading to an increased capacity forself-management for some patients whereas, for other pa-tients, PRO-based follow-up had no influence on their abilityto manage the epilepsy or, in some instances had a negativeinfluence on their perception of their follow-up and theircontact to the clinic. For the most part, the supportingmechanisms for self-management found in our analysis re-flect the general patterns that have been reported in the lit-erature. For example, the improvement in communicationsis in line with findings reported in several other studies ofPRO measures in clinical practice [7, 8, 11, 23]. The in-creased awareness of psychosocial problems and an in-creased understanding of the disease has also beenrecognized in previous research [7, 24, 25]. Accordingly,some of the inhibiting mechanisms we found have also beenrecognized in prior reports [7, 23]. The patients experiencedthat it was only PRO questions about seizures or medicinesthat the clinicians would respond to. This is in line with priorresearch in relation to the use of PRO measures in cancercare, which highlights that high score PRO data might notbe explored further if health care providers do not relatethem to the disease or the treatment [23]. Furthermore, thereseems reason to consider if some of the inhibiting mecha-nisms found in our study are linked to elements of the PROsystem not being designed to optimize patient or clinicianengagement. Perhaps, one way to optimize clinician engage-ment could be to train clinicians in deliberate use of PROmeasures in the patient-clinician encounter. Such a notion isin line with conclusions from research in oncology,pediatrics, and lung transplant, which argue that there is aneed to train clinicians in how to use PRO measures and forrecommendations on how to respond to issues identified byPRO measures [26, 27].What stands out in our findings, compared to previousresearch in relation to PRO-based follow-up, are mecha-nisms related to patients’ experiences of being respon-sible for the assessment of health status and need ofcontact. In our study, it became evident that patientsFig. 1 PRO-based follow-up’s influence on capacity for self-management. The figure represents inhibiting and supporting mechanisms for patients’capacity for self-management. The double-arrow illustrates differences in experiences of ownership towards PRO-based follow-up on a spectrum fromlack of ownership to sense of ownership as a possible explanatory mechanismMejdahl et al. Journal of Patient-Reported Outcomes  (2018) 2:38 Page 7 of 9had different attitudes towards the responsibility and ac-tivity induced by PRO-based follow-up. This variation inpreferences for being active is in agreement with Roter’s[28] framework of different models of patient-centeredcommunications and the associated expected roles, andwith Riiskjær’s [29] distinction between active and pas-sive patients based on their information-seeking behav-ior. Furthermore, this variation in preferences for beingactive accords with the constructs behind the ControlPreferences Scale (CPS) [30]. CPS is designed to elicitconsumers’ preferences regarding participation inhealth-care decisions. Differentiating between differentroles consumers can assume, the CPS offers an under-standing of variations in the degree of control that dif-ferent patients prefer in the context of treatmentdecision-making [30].In the CPS, three roles are described -- the active role,the collaborative role and the passive role -- representingpatient preferences for participating in decisions. Withthe CPS, patients are hypothesized to have differentpreferences about keeping control over treatment (theactive role), sharing control with their physician (the col-laborative role), or relinquishing control to their phys-ician (the passive role) [30]. These typologies can bereflected in the patients’ experiences depicted in ourstudy. In our findings, we saw both positive and negativeattitudes towards the anticipated active patient participa-tion that is embedded in PRO-based follow-up. Forsome patients, the embedded participation contributedto a strengthened autonomy and increased their sense offreedom, whereas for others, the embedded participationwas accompanied with a feeling of rejection and discon-nection to the clinicians. These negative attitudes can beinterpreted as a preference for a passive role, whereasthe positive experiences can be seen as preferences for acollaborative or active role in the follow-up. Thus, ourfindings give reason to consider if PRO-based follow-upwill be most appropriate for patients who have an indi-vidual preference for holding an active or collaborativerole in their follow-up.There are some limitations to our study. Concerningtransferability, we acknowledge that although patientswith epilepsy are used as an exemplar case in our study,there may be some characteristics associated with thisseizure disease that are dissimilar to the characteristicsof other long-term conditions. Given that epilepsy is acondition in which fear of seizure can perhaps influencethe patients need for ‘being close to’ the experts, furtherdeliberation would be appropriate to determine whetherthe resistance towards the responsibility of assessinghealth status and need of contact identified in this popu-lation may be more extensive than with other patientpopulations. Another limitation to our study is the factthat the participants were all current users of thePRO-based follow-up. It could have been beneficial toalso include patients who had dropped out ofPRO-based follow-up. Thus, further research shouldboth include other long-term conditions and attentionto the group of patients that for some reason are notable to remain in PRO-based follow-up. Nonetheless, weexpect these findings may have relevance for other con-texts where patients with long-term conditions enterPRO-based follow-up, as they shed light on supportingand inhibiting mechanisms in PRO-based follow-up tosupport self-management.In order to enhance the potential of PRO measures to in-crease patients’ capacity for self-management, we suggestbringing a clinical awareness to the issue of the quality of theintroduction to the PRO-based follow-up to the patients. Byenhancing comprehension of the explicit purpose ofPRO-based follow-up, the patient’s sense of ownership to-wards the follow-up could potentially increase. Additionally,we suggest that the decision regarding the individual patient’sparticipation in PRO-based follow-up could be a shared deci-sion (between clinician and patient) possibly supported by adecision aid. Such a decision aid could be based on the vari-ous possibilities and inhibitors found in this study. Given theissues that patients raised about the inappropriateness andnegatively of some PRO measures, careful considerations re-garding the selection of specific PRO measures are recom-mended before starting routine monitoring.ConclusionThis study draws attention to patients’ experiences ofPRO-based follow-up as a means of self-managementsupport. The findings demonstrate broad variation inthe influences of PRO measures on patient’sself-management in life with epilepsy. Sense of owner-ship may explain this variation. We suggest supplemen-tary clinical initiatives in order to enhance the benefitsfrom PRO-based follow-up, particularly on how patientsare allocated to this health care service.Additional fileAdditional file 1: Epilepsy questionnaire. (PDF 1501 kb)AbbreviationsCPS: Control Preferences Scale; ID: Interpretive Description; PRO: Patient-reportedoutcomesAcknowledgementsWe thank all the patients who generously shared both their time andexperiences. We thank the staff at the epilepsy outpatient clinics at theneurological departments in Holstebro Regional Hospital, Viborg RegionalHospital and Aarhus University Hospital for their help and kind assistance.FundingThis study is funded by Department of Public Health, Aarhus University,Denmark and The Novo Nordisk Foundation (NNF16OC0022122).Mejdahl et al. Journal of Patient-Reported Outcomes  (2018) 2:38 Page 8 of 9Authors’ contributionsStudy design: CM, LS, NH, ER, KL; Data collection: CM; Data analysis: CM, LS,ST, KL; Manuscript preparation: CM, LS, NH, ER, ST, KL. All authors read andapproved the final manuscript.Ethics approval and consent to participateThe study was approved by the Danish Data Protection Agency(Identification no. 2015–41-4119). According to Danish law, this kind ofqualitative study does not require notification to the Committee onBiomedical Research Ethics. All procedures performed in studies involvinghuman participants were in accordance with the ethical standards of theinstitutional and national research committee and with the 1964 Helsinkideclaration and its later amendments or comparable ethical standards.Informed oral and written consent were obtained and all generalrequirements for health science research were followed.Consent for publicationNot applicable.Competing 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 details1Department of Public Health, Aarhus University, Bartholins Allé 2, DK-8000Aarhus, Denmark. 2The Research Program in Patient Involvement, AarhusUniversity Hospital, Palle Juul-Jensens Boulevard 99, DK-8200 Aarhus,Denmark. 3WestChronic, Occupational Medicine, University Research Clinic,Aarhus University, Herning, Gl Landevej 61, DK-7400 Herning, Denmark.4Department of Clinical Epidemiology, Aarhus University Hospital, OlofPalmes Allé 43-45. DK-8200 Aarhus N, Aarhus, Denmark. 5DEFACTUM, Social& Health Services and Labour Market, Central Denmark Region, Olof PalmesAllé 15, DK-8200 Aarhus, Denmark. 6University of British Columbia School ofNursing, 2211 Wesbrook Mall, Vancouver, BC V6T 2B5, Canada. 7Departmentof Clinical Medicine, Aarhus University, Palle Juul-Jensens Boulevard 82,DK-8200 Aarhus, Denmark.Received: 25 March 2018 Accepted: 20 August 2018References1. Appleby, J., Devlin, N. J., & Parkin, D. W. (2016). Using patient reported outcomes toimprove health care (p. 1009). Chichester, West Sussex: John Wiley & Sons Inc.2. U.S. (2006). Department of Health and Human Services FDA. Guidance forindustry: patient-reported outcome measures: use in medical productdevelopment to support labeling claims: draft guidance. Health Qual LifeOutcomes, 4, 79. https://doi.org/10.1186/1477-7525-4-79.3. Regeringen, Danske Regioner. 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