ORIGINAL RESEARCH published: 11 May 2022 doi: 10.3389/fpubh.2022.842462 Preferences Regarding Self-Management Intervention Outcomes of Dutch Chronically Ill Patients With Limited Health Literacy Marieke van der Gaag 1*, Monique Heijmans 1 , Marta Ballester 2,3,4 , Carola Orrego 2,3,4 , Ena Niño de Guzmán 5,6 , Lyudmil Ninov 7 and Jany Rademakers 1,8 1 Netherlands Institute for Health Services Research, Utrecht, Netherlands, 2 Red de investigación en servicios de salud en enfermedades crónicas, Madrid, Spain, 3 Avedis Donabedian Research Institute (FAD), Barcelona, Spain, 4 Universitat Autònoma de Barcelona, Barcelona, Spain, 5 Department of Clinical Epidemiology and Public Health, Sant Pau Institute for Biomedical Research, Barcelona, Spain, 6 Ibero-American Cochrane Center (CCIb), Barcelona, Spain, 7 European Patients Forum, Brussels, Belgium, 8 Department of Family Medicine, Care and Public Health Research Institute, Maastricht University, Edited by: Maastricht, Netherlands Roy Rillera Marzo, Management and Science University, Malaysia Background: For many chronically ill patients self-management of their disease is Reviewed by: difficult. This may be especially true for people with limited health literacy as they are faced Krushna Chandra Sahoo, with additional challenges in the day-to-day management of their disease. Research Regional Medical Research Center has shown that self-management support is most effective when tailored to the needs (ICMR), India Iffat Elbarazi, and preferences of patients. Therefore, this study explores the preferences regarding United Arab Emirates University, self-management outcomes of chronically ill patients with limited health literacy. United Arab Emirates *Correspondence: Methods: A total of 35 patients with limited health literacy were invited to a Marieke van der Gaag concept-mapping procedure consisting of two card sorting tasks. Patients ranked 60 m.vandergaag@nivel.nl outcomes, which are often found in literature in relation to self-management, to the level that was important for themselves. Means were calculated for each outcome and Specialty section: This article was submitted to domain, and differences within the group were analyzed. Public Health Education and Promotion, Results: For patients with limited health literacy, satisfaction with care is the most a section of the journal important outcome domain. This domain includes overall satisfaction, the communication Frontiers in Public Health with health care providers, the provision of information and trust. At an outcome Received: 23 December 2021 level, outcomes related to symptom management and improving competences to self- Accepted: 19 April 2022 Published: 11 May 2022 management scored very high. No differences between patient groups for age and sex Citation: were found. van der Gaag M, Heijmans M, Ballester M, Orrego C, Niño de Conclusion: Chronically ill patients with limited health literacy prefer a wide variety Guzmán E, Ninov L and Rademakers J of outcomes for their self-management. Next to health related outcomes, patients (2022) Preferences Regarding mostly prefer to work on their competences for self-management. For health care Self-Management Intervention Outcomes of Dutch Chronically Ill professionals, acting on these patient preferences and building a solid relationship will Patients With Limited Health Literacy. enhance successful self-management. Front. Public Health 10:842462. doi: 10.3389/fpubh.2022.842462 Keywords: health literacy, chronic disease, self-management, patient preference, concept mapping Frontiers in Public Health | www.frontiersin.org 1 May 2022 | Volume 10 | Article 842462 van der Gaag et al. Preferences Regarding SMI Outcomes BACKGROUND Also, more than other patients, patients with limited health literacy often lack self-confidence to ask questions to a caregiver, The general population is getting older and the number of and sometimes lack motivation to live healthier (22–24). patients with one or more chronic disease(s) is rising (1). Chronic Qualitative research, exploring patients needs and preferences diseases are the leading cause of morbidity and mortality in shows that a variety of outcomes are important for chronically Europe (2). In managing these chronic conditions, chronically ill patients in the context of or as a result of self-management ill patients are more often expected to play an active role in (3, 25–28). Often they aim for better medical management of the their own health care. Their role has shifted from a passive disease like a reduction in daily symptoms or better adherence recipient of care to a more active role where patients expected to medical advice. However, patients also wish to make lifestyle to self-manage their disease (3). Also, since the last two decades changes, get more satisfaction from their treatment, have better in the Netherlands, a choice has been made for programmatic interaction with their health care providers, and a better quality care for the chronically ill. There is a strong emphasis on self- of life and well-being. In addition, intermediate SMI outcomes management and personal responsibility of the patient and their are also mentioned as important goals to strive for. These relatives in order to relieve professional care as much as possible intermediate outcomes can be considered to be prerequisites for (4). Self-management requires people with chronic illness to successful self-management (support) and may be related to the undertake a variety of activities, for example, psychologically patient’s knowledge, self-efficacy, motivation, behavioral skills or coping with their illness in daily life, changing eating behaviors, the process of care, such as a trustful relationship with health care medication adherence, and communicating with their health care providers or more continuity in care offered by different health providers. It is therefore not surprising that many patients find it care proffesionals. difficult to self-manage and instead experience barriers (3, 5–7). It is important to know which outcomes are especially For these patients, self-management support may be needed. important for patients with limited health literacy as this insight Self-management support is defined as the systematic may help to better support this vulnerable group in their self- provision of education and supportive interventions to improve management and may help for the future development and patients’ skills and confidence in managing their health problems, evaluation of self-management interventions directed to this including regular assessment of progress and problems, goal large patient group. Evidence of effectiveness should derive from setting, and problem-solving support (8). During the last trials that assess outcomes that are important to patients. Besides, decades, many self-management interventions (SMIs) have identifying important outcomes from the patient perspective, and been developed, aimed to equip patients (and caregivers) to taking these as a starting point for intervention development, actively self-manage their chronic condition(s). Previous research contributes to uniformity and standardization of outcome suggests that SMIs may be effective and lead to better patient reporting (29). outcomes and less health care use (9–11). Literature also shows Since preferred outcomes with respect to self-management of self-management supporting interventions are more effective patients with limited health literacy have not yet been extensively when they are tailored to a patient’s individual needs and studied, the aim of this study is to explore which outcomes of preferences as there is a vast variation in the extent to which self-management are most important for chronically ill patients patients are able and motivated to self-manage (12–14). with limited health literacy and whether these outcomes differ For the tailoring of interventions and to match the needs and according to patient characteristics such as sex, comorbidity opportunities of patients as much as possible, the preferences, or age. needs and capabilities of specific patient groups and individuals should be known. All chronically ill patients would probably benefit from tailored interventions. However, a group of patients METHODS that especially may benefit are patients with limited health literacy, who constitute a large group among the general To explore which outcomes are most relevant for patients with population of patients with chronic conditions (15, 16). In the limited health literacy in the context of or as a result of self- Netherlands the group of chronically ill patients with limited management, we build on experiences and results from an health literacy is estimated to be 30% of the general population ongoing international study about effective Self Management (17). Health literacy entails people’s knowledge, motivation and Interventions (SMIs) for patients with chronic illnesses. In competences to access, understand, appraise, and apply health this study, called COMPAR-EU (30), a general catalog of SMI information in order to make judgements and take decisions outcomes used in self-management interventions for patients in everyday life concerning health care, disease prevention and with chronic diseases was developed and structured, based on an health promotion, and in this way to maintain or improve quality extensive literature review and expert opinions. In this catalog, of life during the life course (18). Research has shown that limited SMI outcomes are categorized in seven domains (see Box 1) health literacy levels are associated with poorer self-management (27, 28). Each domain contains both outcomes that are generic skills (19), poorer health outcomes, and increased health care use across chronic diseases (e.g., symptom monitoring within the (20, 21). Patients with limited health literacy often face additional domain of competences and self-monitoring) and disease specific difficulties during the management of their illness, as they may outcomes that can be added when used for a specific diseases lack the right knowledge and information to make decisions (e.g., monitoring blood glucose in case of diabetes). Within about their health, or the skills to get or apply that information. COMPAR-EU these seven domains were specified for patients Frontiers in Public Health | www.frontiersin.org 2 May 2022 | Volume 10 | Article 842462 van der Gaag et al. Preferences Regarding SMI Outcomes For example, dietary habits comprising “minimizing water BOX 1 | Seven domains of SMI outcomes consumption” for heart failure and “adherence to dietary habits” for diabetes and COPD were merged and rephrased in one single • Competences and self-management behaviours • Health related aspects outcome “dietary habits.” • Quality of life of patients Furthermore, specific terms which slightly differed were • Caregivers’ quality of life and competences merged. For example terms like “Weight loss,” “Bodyweight,” • Satisfaction with care and “Stable weight” were merged to “Weight control.” Outcomes • Health care use as “short-term COPD symptoms” and “short term heart failure • Costs symptoms” were merged and called “short term symptoms.” This process resulted in a list of 60 generic outcomes relevant in the context of chronic disease SMIs. All outcomes were translated to with type 2 diabetes, COPD, heart failure, and obesity. All four Dutch and formulated in plain language by MG and checked by diseases together resulted in a catalog including 145 different SMI MH. MH was also involved in the development of the catalog outcomes, including both generic and disease-specific outcomes. of outcomes in COMPAR-EU so they knew the meaning of each This catalog of outcomes was used as the starting point of this outcome very well. MH is an expert in health literacy and has study. To explore which outcomes are most relevant for SMIs vast experience in writing texts for this target group or translating from the perspective of patients with limited health literacy, difficult words into plain language. we used a concept-mapping approach consisting of two card sorting tasks. The preparation and execution of these tasks is Concept Mapping described below. At the start of this study, which took place during the first wave of COVID-19, we planned to hold two face to face group meetings Recruitment in which we wanted to explore and rank outcomes of SMIs to Patients with limited health literacy were recruited using an the extent that they are important for people with limited health advertisement distributed by local organizations such as an literacy. Concept mapping is a frequently used method to discuss organization for people with reading and writing difficulties, complex topics in a structured way. In general concept mapping online peer support groups for patients with diabetes and consists of two rounds of card sorting tasks. During the first task, COPD, and patient organizations in the Netherlands. These participants group outcomes in concepts and subsequently rate organizations contacted there members via their newsletters or the outcomes by importance. This method has been often used social media channels. The advertisement was written in simple to explore patient preferences and is a highly valued method to Dutch language and invited people to participate in our study discuss complex topics in a structured way (33–36). who encountered difficulties in their interaction with health The intention for this study was to use a concept mapping care or during the daily management of their disease. Examples approach consisting of the two card sorting tasks. At first, the were given such as: problems to understand their doctor or participants received instructions to group the cards by concepts. medical information, difficulties in following medical advise, or Unfortunately, during the face-to-face sessions, it appeared that difficulties in finding the right health care. In the advertisement the participants were unable to perform this task. It turned out some examples of possible problems were given inspired by the to be too complex for them to sort 60 outcomes according to Single Item Literacy Screener (31) and the brief questions of the similarity of contents. Participants were unable to look at Chew, which are both frequently used and validated to screen outcomes on a conceptual level and only looked at whether for limited health literacy (32). Patients who felt addressed by the outcome was relevant for them personally. Therefore, after this advertisement could sign up as a participant of this study the face-to-face sessions (n = 6), we decided to only use the by contacting the researchers by email or phone in February prioritization card sorting task, which was easier to perform. and March 2020. In addition to the experience of problems During this card sorting task, the participants individually sorted in using or finding health care, people had to be 18 years or the outcome cards based on the importance they personally older and reported one or more self-reported diagnoses of a attached to an outcome. During the face-to-face sessions it chronic disease. became clear that the participants understood the wording of the outcomes correctly. The main question during the card Outcomes Preparation sorting task was: “What’s most important for you? For the self- To explore which outcomes are most relevant for SMIs for management of my disease, I would like to. . . ” Outcomes were patients with limited health literacy, we used the catalog of phrased like “to take my meds properly,” or “to be satisfied outcomes developed in the COMPAR-EU study for four specific with my care” or “not feel anxious.” For this task, the following diseases as the starting point. The 145 different outcomes rules applied: all outcomes had to be placed in one of five of this catalog consisted of both generic and disease-specific piles, from 5 (most important) to 1 (not important at all); and outcomes. Since this current study explores self-management outcomes had to be distributed equally across the five piles, thus outcome preferences relevant for patients with limited health requiring patients to think and set priorities about differences in literacy suffering from different chronic conditions, we merged importance. The card sorting task was carried out in two different and rephrased the disease-specific outcomes in generic terms. ways: initially in face-to-face meetings with participants using This procedure was done independently by two researchers. an actual pile of cards. The face-to-face meetings took place at Frontiers in Public Health | www.frontiersin.org 3 May 2022 | Volume 10 | Article 842462 van der Gaag et al. Preferences Regarding SMI Outcomes a location of choice of the participants and were performed by Every participant was diagnosed with one or more chronic MG and MH. Later, because of the restrictions by COVID-19, the diseases. Twenty patients suffered from more than one chronic data was collected digitally using the software of Provenbyusers, diseases (n = 20). The diseases reported most were COPD, which is user-friendly program (https://provenbyusers.com). In asthma, diabetes and cardiovascular diseases. Mean participant the latter, the participants got a link to the online software, where age was 66 years and 54% of the participants were female. All face- they virtually could divide the pile of cards in the appropriate to-face participants were female, but there were no significant categories. The participants had the option to contact MG when differences in mean age or distribution of comorbidities between having difficulties with accessing the online software. For the the online and face-to-face group. A summary of the participant first five online participants there was a quick telephone follow- characteristics is described in Table 1. up to make sure the card sorting task was understood correctly and to address digital difficulties. All participants filled in a Preferences at Domain Level short questionnaire upfront, to collect their demographics, such An overview of all scores of the domains and items is presented as: sex, age and chronic disease. The patients who participated in Table 2. Patients with limited health literacy rated the domain face-to-face signed a written informed consent, and the online “satisfaction with care” as most important with a mean (SD) participants gave their consent via email. Participation was of 3.44 (0.77). This domain describes care satisfaction overall anonymous and participants had the option to withdraw from and the relationship between the health care professional and the study at anytime. the patient, including trust, communication and getting enough For this study no ethical clearance from a recognized medical information. Subsequently, “health related aspects,” mean 3.25 ethics review committee was necessary. According to the Medical (0.38), are also important for patients with limited health literacy. Research Involving Human Subjects Act (WMO), this study does In this domain, mainly outcomes related to “seriousness of the not influence the research participants’ health care they receive. disease” and “disease management,” score high, but mortality on the contrary, rated low with a mean of 1.89 (1.11). “Symptom Analyses control” has the highest mean score with a mean of 4.23 Means and standard deviations were calculated for each outcome (0.91), followed by “being in good shape.” Outcomes in the separately, and for all domains, using STATA version 15.0. Results domain “patients’ competence in self-management behaviors” were grouped and presented per domain and by a top-15 of score a mean of 3.10 (0.30). The highest scoring outcome in individual outcomes. Missing values were replaced by the mean this domain is medication adherence (mean 4.06), followed by value of the outcome. Participants who performed the card patient activation (mean 3.80) and self-efficacy (mean 3.80). sorting task incorrectly, for example by answering almost all Self-management competences also include two outcomes on outcomes “important” and who did not try to equally divide health literacy. “How to find health information” scores 2.8 (1.02) the outcomes over all answering options were excluded. T-tests and “How to use health information” scores 2.63 (1.17). The were used for the analysis of differences among groups defined mean scores of the domains did not differ significantly by mode by sex and comorbidities. Age was analyzed as a continuous of participation. variable, using Pearson’s correlation coefficient. Differences were considered significant with a p-value <0.05. Preferences at Outcome Level Table 3 presents the top-15 of highest scoring outcomes. Three outcomes have a mean importance >4, which corresponds to RESULTS “very important.” “Symptom control” has the highest mean score, followed by “being in good shape,” and “medication adherence.” Participant Characteristics The table shows that outcomes that were important to chronically In total, 39 patients participated in the card sorting task, of ill patients with limited health literacy are diverse and belong to a which 35 were included in the analysis. Four participants were variety of outcome domains. excluded due to incorrectly performing the card sorting task. Difference in Outcome Preferences by Background Characteristics The mean scores of each outcome domain by sex, comorbidity, TABLE 1 | Participant characteristics. and age are presented in Table 4. Although no significant differences were found concerning sex and age, there were Participants (n = 35) certain trends in the mean scores. The highest scoring domains for males are subsequently “Health related aspects” (mean Age, mean (sd), range 65.9 (10.1), [36–89] 3.33), “Satisfaction with care” (mean 3.28) and “Competences Gender Male, n (%) 16 (46) and self-management behaviors” (mean 3.07). The ranking of Female, n (%) 19 (54) highest scoring domains slightly differed for females, namely Mode of participation Online, n (%) 29 (83) “Satisfaction with care” (mean 3.58), “Health related aspects” Face to face, n (%) 6 (17) (mean 3.19) and “Competences and self-management behaviors” Comorbidities No, n (%) 15 (43) (mean 3.12). A Pearson’s correlation was run to assess the Yes, n (%) 20 (57) relationship between age and the mean scores of outcome Frontiers in Public Health | www.frontiersin.org 4 May 2022 | Volume 10 | Article 842462 van der Gaag et al. Preferences Regarding SMI Outcomes TABLE 2 | Mean importance scores of the seven outcome domains and their TABLE 2 | Continued outcomes. Mean (sd) Mean (sd) Stress 3.28 (1.41) Satisfaction with care 3.44 (0.77) Participation in social activities 3.17 (1.52) Health care professional trust 3.57 (1.20) Depression 2.77 (1.52) Communication with health care professionals 3.54 (1.20) Hostility 2.71 (1.13) To get enough information from health care professional 3.46 (1.22) Anxiety 2.60 (1.33) Care satisfaction 3.20 (1.16) Treatment burden 2.82 (2.92) Health related aspects 3.25 (0.38) Organize my own care 3.17 (1.40) Seriousness of the disease 3.51 (0.53) Limit treatment side effects 2.94 (1.14) Being in good shape 4.14 (0.91) Medication burden as a perception 2.94 (1.28) Exercise capacity 3.77 (1.26) Treatment burden in terms of time 2.23 (1.09) Reduce the chance of developing other disease 3.34 (1.41) Social relations and acitivities 2.66 (0.33) General metabolic functions 2.80 (1.32) Family relationships 3.11 (1.35) Disease-management 3.49 (0.50) Meeting other patients 2.20 (1.16) Symptom control 4.23 (0.91) Physical functioning 2.64 (0.45) Symptom recognition 3.74 (1.04) Being able to do the things I want to 3.86 (1.22) Sleep quality 3.69 (1.32) Mobility 3.60 (1.38) Fatigue 3.69 (1.18) Being able to do sports 2.37 (1.29) Prevent progression of symptoms 3.66 (1.43) Being able to work 1.74 (1.09) Maintaining healthy nutrition 3.57 (1.20) Sex life 1.63 (0.97) Maintaining physical activity 3.43 (1.38) Health care use 2.41 (0.88) Blood pressure control 3.06 (1.37) Number of visits/contacts with health care provider 2.51 (1.12) Weight management 2.94 (1.39) Number of hospital admissions 2.31 (1.37) Pain 2.91 (1.54) Caregiver quality of life and competences 2.34 (0.87) Complications 2.21 (0.99) Caregiver knowledge 2.46 (1.09) Cholesterol 2.40 (1.19) Caregiver burden 2.23 (1.42) Hyperglyceamia 2.03 (1.25) Health care costs 2.17 (0.98) Mortality 1.89 (1.11) Lower risk of death 1.89 (1.11) The Bold values are the headings of the 7 outcome domains and their mean value. Patients competence in self-management behaviors 3.10 (0.30) Self-management competences 3.30 (0.47) Patient activation 3.80 (1.28) preferences. No correlation was found between age and the Self-efficacy 3.80 (1.18) outcome domains. For participants with comorbidities, the Participation and decision making 3.74 (1.31) mean score of “Caregivers quality of life and competences” Knowing what care I am entitled to 3.09 (1.36) was significantly lower compared to participants with Knowledge 3.00 (1.14) no comorbidities. To take my own decisions together with my family 2.86 (1.38) Health literacy/ how to find health information 2.80 (1.02) DISCUSSION Health literacy/ how to use health information 2.63 (1.17) Self-management/self-care behaviors 2.96 (0.41) Until now, information about outcome preferences of patients Medication adherence 4.06 (1.03) with limited health literacy regarding SMIs was limited. This Physical activity 3.74 (1.24) study shows that, patients with limited health literacy rated Dietary habits 3.69 (1.25) a large number of outcomes as important. These outcomes Adherence to program 3.17 (1.25) belonged to a variety of outcome domains. Consistent with the Self-monitoring 3.14 (1.29) literature on chronically ill patients in general, medical outcomes Alcohol consumption 1.6 (0.85) like indicators of symptom control, being in good shape and Smoking cessation 1.31 (0.76) medication adherence are among the outcomes that are perceived Quality of life 2.92 (0.33) as most important by patients with limited health literacy. These Psychological functioning 3.21 (0.63) outcomes are logical consequences of treatment guidelines and Positive attitude 3.97 (1.12) often the first goals of professional care in chronic conditions, Happiness 3.60 (1.31) such as: diabetes, cardiovascular diseases, and lung diseases. This Coping 3.54 (1.22) study shows that also for patients with limited health literacy these outcomes are important. However, when asking patients (Continued) what they think are important outcomes, literature shows that Frontiers in Public Health | www.frontiersin.org 5 May 2022 | Volume 10 | Article 842462 van der Gaag et al. Preferences Regarding SMI Outcomes TABLE 3 | Top-15 outcome mean scores. role in their own treatment (patient activation) were on the highest scoring items. Outcome Mean (sd) Domain It is not surprising that patients with limited health literacy Symptom control 4.23 (0.91) Health related highly rank communication support for their self-management, Being in good shape 4.14 (0.81) Health related as these patients often lack these skills. Communication skills are Medication adherence 4.06 (1.03) Patients’ competences crucial for patients to have an active role and for shared-decision Positive attitude 3.97 (1.12) Quality of life making, and to successfully deal with the daily management Being able to do the things I want to 3.86 (1.22) Quality of life of a chronic disease. The same goes for self-management Self-efficacy 3.80 (1.18) Patients’ competences competences like self-efficacy and patient activation, which are Patient activation 3.80 (1.28) Patients’ competences prerequisites for successful self-management. However, this is often difficult for patients with limited health literacy as they Exercise capacity 3.77 (1.26) Health related lack the necessary skills for this due to limited knowledge, Symptom recognition 3.74 (1.04) Health related reading problems, or difficulties in understanding complex Participation and decision making 3.74 (1.31) Patients’ competences information. Self-management often concerns applying advices Physical activity 3.74 (1.24) Self-care behaviors from health care professionals, independently at home. This Fatigue 3.69 (1.18) Health related requires knowledge and behavioral skills. As patients with Sleep quality 3.69 (1.32) Health related limited health literacy often lack these skills, an intermediate Dietary habits 3.69 (1.25) Self-care behaviors step is required. Advices need to be understood first, as well Prevent progression of symtoms 3.66 (1.43) Health related as skills learned. This intermediate step is often automatically successful in patients having adequate health literacy, but not in patients with limited health literacy. A recent scoping review studying patient preferences of self-management, also outcomes are often much broader. Although patients also strive based on qualitative studies, confirms that patients especially for good medical outcomes and a healthy lifestyle, they also value the relationship with their health care professional. strive for a good quality of life for themselves and their network, Empathy, emotional support, and compassionate care enhance participation in work, shared decision making, autonomy, and the adherence to self-management tasks (37). an active role in their own care (26, 37). This was shown in a We did not find significant differences within our group recent European study, COMPAR-EU (30), in which the outcome of patients with limited health literacy according to sex, age, preferences of chronically ill patients with diabetes, heart failure, or comorbidity. This may be due to the small number of obesity, and COPD were studied. The catalog of outcomes for people participating and is in contrast with the findings in these studies were the same as we used as a starting point for other studies. The results seemed to show certain trends, this study (27). During a Delphi exercise (unpublished data), however these are consistent with quantitative studies: for patients with diabetes, COPD, heart failure, or obesity also ranked example for participants with comorbidities the mean score of the outcomes according to importance. Although the methods “caregivers quality of life and competences” was significantly are not completely comparable (items were in English, not lower, but this needs to be further explored with larger simplified, and scoring was per item on a 10-point scale), it is sample sizes. It is known that self-management aspects, like interesting to compare their results with the results of this study motivation and confidence, often differ between patient groups as both study results are from a patient’s perspective. Our highest with different background characteristics. For example, literature scoring outcomes, especially adherence and symptom control, has shown that men and women differ in self-confidence correspond with the results of the Delphi study in COMPAR- and motivation to self-manage, and have different preferences EU. However, the domain of satisfaction with care scored solely regarding patient-provider communication (38, 39) as women highest in the group of patients with obesity. Patients with heart often prefer a more active role during consultation than men; failure and COPD ranked the domain of competences in self- the same counts for younger people compared to older (40– management the highest, and for patients with diabetes the 42). Having comorbidities also makes optimal self-management highest domains were the health-related outcomes. harder to achieve. Patients with comorbidities often get various This is not different for people with limited health literacy advices from different health care providers, which also can be as we noticed in this study. Besides the frequently used contradictory (43–45). health related outcomes, also quality of life related outcomes, Our work is subject to some limitations. The Dutch study and outcomes related to the patient-professional relationship sample may not be entirely representative for the population were rated as important. Overall, at domain level, the results of patients with limited health literacy in the Netherlands. of this study show that patients with limited health literacy We know that about 10% of the people with limited health rank the domain of satisfaction with their care as most literacy in the Netherlands have problems with reading and some important. Satisfaction with care includes having trust in on have problems with using a computer. Due to the online card own’s health care professional and good communication and sorting method, patients who lack these skills might have not information provision. Besides that, outcomes related to the signed up for this study. However, all participants applied to patients competences were seen as essential. Having trust in one’s this study because they experienced difficulties in obtaining or own competences (self-efficacy) and being able to play an active understanding information or in their access to health care to Frontiers in Public Health | www.frontiersin.org 6 May 2022 | Volume 10 | Article 842462 van der Gaag et al. Preferences Regarding SMI Outcomes TABLE 4 | Mean scores of outcome preferences by background characteristics. Total group Sex Mean (SD) Comorbidity Mean (SD) Age Pearson’s correlation Men (n = 16) Women (n = 19) P-value No (n = 15) Yes (n = 20) P-value r (33) P-value Competences and 3.10 (0.30) 3.07 (0.29) 3.12 (0.31) 0.60 3.20 (0.32) 3.02 (0.25) 0.07 −0.03 0.85 self-management behaviors Health related 3.25 (0.38) 3.33 (0.36) 3.19 (0.39) 0.29 3.16 (0.34) 3.32 (0.40) 0.24 0.09 0.61 aspects Quality of life of 2.92 (0.33) 2.84 (0.30) 2.99 (0.34) 0.19 2.81 (0.27) 3.00 (0.35) 0.09 −0.11 0.52 patients Caregivers quality 2.34 (0.87) 2.28 (0.93) 2.39 (0.84) 0.71 2.70 (0.88)* 2.08 (0.78)* 0.03 0.03 0.87 of life and competences Satisfaction with 3.44 (0.77) 3.28 (0.75) 3.58 (0.79) 0.26 3.47 (0.83) 3.43 (0.74) 0.88 0.06 0.75 care Health care use 2.41 (0.88) 2.50 (0.89) 2.34 (0.88) 0.60 2.53 (0.95) 2.33 (0.83) 0.50 0.06 0.73 Costs 2.17 (0.98) 2.19 (0.83) 2.16 (1.12) 0.93 2.00 (0.85) 2.30 (1.08) 0.38 −0.01 0.93 * P-value < 0.05. some extent. The online software could also have resulted in CONCLUSION invalid results of the card sorting task due to a lack of digital literacy skills. The software, however, was so intuitive that digital In summary, chronically ill patients with limited health literacy errors were unlikely. This was ensured by the telephone follow- prefer a wide variety of outcomes for their self-management up with the first participants. In addition, we had a rather small and differ in this way not from the average patient with a group of patients as this was an exploratory study and recruiting chronic disease. However, patients with limited health literacy patients was challenging during the COVID-19 pandemic. It is prefer more than others to work on their competences for plausible that the expected differences between patient groups self-management. For health care professionals, acting on these were not found due to limited sample sizes or the heterogeneity patient preferences and building a solid relationship will enhance of chronic illnesses of the sample. For future research, we successful self-management. suggest larger sample sizes and also to include patients that have difficulties in reading. This would also mean another approach, DATA AVAILABILITY STATEMENT for example with face-to-face interviews, with the advantage of obtaining qualitative information on why certain outcomes are The raw data supporting the conclusions of this article will be important for patients. made available by the authors, without undue reservation. Implications for Policy and Practice ETHICS STATEMENT The most important implication for clinical practice is that since patients with limited health literacy prefer a variety of Ethical review and approval was not required for the study on outcomes for their self-management, it is important for health human participants in accordance with the local legislation and care professionals to explore these preferences together with institutional requirements. The patients/participants provided the patient in advance. In addition, patients with limited health their written informed consent to participate in this study. literacy need specific attention for the prerequisites of self- AUTHOR CONTRIBUTIONS management, for example knowledge, self-efficacy, and learning self-management competences, before focusing on health related MG contributed to the design of the project and prepared outcomes. A solid relationship between the patient and the health the manuscript of the article. MH, MB, CO, EN, LN, and care professional will enhance this process to successful self- JR contributed to the design of the project and reviewed and management. contributed to the manuscript of the article. MH, MB, and CO During the initially planned concept mapping approach, it contributed to the catalog of outcomes used as a starting point became clear that participants were unable to think in an abstract for this study. All authors contributed to the article and approved way about the self-management concept, beyond their own the submitted version. experiences. The inability of patients to understand and apply abstract goals is an important implication for clinical practice. 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(2013) 10:81–92. doi: 10.1177/1742395313 is cited, in accordance with accepted academic practice. No use, distribution or 496591 reproduction is permitted which does not comply with these terms. Frontiers in Public Health | www.frontiersin.org 9 May 2022 | Volume 10 | Article 842462