Open access Original research Definitions and measurement of health literacy in health and medicine research: a systematic review Kristin Hjorthaug Urstad ,1,2 Marit Helen Andersen,3,4 Marie Hamilton Larsen,5,6 Christine Råheim Borge,3,7 Sølvi Helseth,8,9 Astrid Klopstad Wahl3,4 To cite: Urstad KH, ABSTRACT Strengths and limitations of this study Andersen MH, Larsen MH, et al. Objectives The way health literacy is understood Definitions and measurement (conceptualised) should be closely linked to how it is measured of health literacy in health ► To our knowledge, this is the first systematic review (operationalised). This study aimed to gain insights into how and medicine research: a to investigate connections between health literacy health literacy is defined and measured in current health systematic review. BMJ Open definitions and instruments used in current health literacy research and to examine the relationship between 2022;12:e056294. doi:10.1136/ literacy research. health literacy definitions and instruments. bmjopen-2021-056294 ► The health literacy definitions and instruments were Design Systematic review in accordance with the categorised based on a health literacy model de- ► Prepublication history and Preferred Reporting Items for Systematic Reviews and additional supplemental material scribed by Nutbeam. Meta-A nalyses statement. for this paper are available ► The initial plan to assess health literacy definitions Data sources The MEDLINE, PsycINFO, ERIC and CINAHL online. To view these files, and instruments for three categories was changed databases were searched for articles published during two please visit the journal online to two due to difficulties in distinguishing between randomly selected months (March and October) in 2019. (http://dx.doi.org/10.1136/ two of the categories. bmjopen-2021-056294). Eligibility criteria We included articles with a quantitative ► Searches were limited to two randomly selected design that measured health literacy, were peer- reviewed months. Received 11 August 2021 and original, were published in the English language and Accepted 15 December 2021 included a study population older than 16 years. Data extraction and synthesis Six researchers screened the articles for eligibility and extracted the health information,1 and adequate health data independently. All health literacy definitions and literacy is seen as a prerequisite for healthy instruments were considered in relation to category 1 behaviours. Researchers have increasingly (describing basic reading and writing skills, disease- worked to identify challenges associated with specific knowledge and practical skills) and category health literacy and investigate the role they 2 (social health literacy competence and the ability to play in an individual’s ability to comprehend interpret and critically assess health information). The categories were inspired by Nutbeam’s descriptions of the self-c are information and its relationship to different health literacy levels. health outcomes.2 Empirical studies have Results 120 articles were included in the review: 60 within reported that low health literacy is associated public health and 60 within clinical health. The majority of the with poor health-r elated outcomes, such as articles (n=77) used instruments from category 1. In total, 79 high hospital admission rates,3 4 low partici- of the studies provided a health literacy definition; of these, 71 pation in preventive activities,5–9 poor self- were in category 2 and 8 were in category 1. In almost half management of chronic conditions,10 poor of the studies (n=38), health literacy was defined in a broad disease outcomes and high mortality.11–13 perspective (category 2) but measured with a more narrow The concept of health literacy emerged focus (category 1). in the 1970s when health education was Conclusion Due to the high degree of inconsistency viewed as social policy.14 A topic- specific between health literacy definitions and instruments in current health literacy research, there is a risk of missing query in the PubMed tools reveals a recent © Author(s) (or their important information about health literacy considered exponential growth of articles about health employer(s)) 2022. Re- use be important to the initial understanding of the concept literacy, with 129 references between 1986 permitted under CC BY- NC. No recognised in the studies. and 1990 increasing to more than 8000 in commercial re- use. See rights and permissions. Published by PROSPERO registration number CRD42020179699. the past 5 years. Today, health literacy is BMJ. seen as a global goal for enhancing health For numbered affiliations see promotion through improved education and end of article. INTRODUCTION communication strategies to improve health Health literacy is usually understood as outcomes.15 Correspondence to Kristin Hjorthaug Urstad; cognitive and social skills that determine the Health literacy is defined in numerous k ristin. h.u rstad@ uis.n o motivation and ability to understand and use ways.14 16–18 In a systematic review by Sorensen Urstad KH, et al. BMJ Open 2022;12:e056294. doi:10.1136/bmjopen-2021-056294 1 BMJ Open: first published as 10.1136/bmjopen-2021-056294 on 14 February 2022. Downloaded from http://bmjopen.bmj.com/ on May 16, 2024 by guest. Protected by copyright.Open access et al,14 17 different definitions and 12 conceptual models to achieve policy and organisational changes (critical were reported on health literacy. Another systematic health literacy). review found that 34 research articles between 2010 and Different understandings of health literacy and different 2015 had an explicit objective to define the concept of measurement tools may be useful as they complement health literacy.17 Moreover, the literature has reported each other and provide different perspectives. However, the use and development of more than 150 health literacy the way health literacy is understood (conceptualised) instruments over the last decade.19–21 Traditionally, health should be closely linked to how it is measured (operation- literacy approaches have focused on individual skill defi- alised) in each study context.23 Nguyen et al has described cits and health education based on the communication of this as a ‘conceptual stumbling block’ that needs to be factual information regarding health risks as well as how resolved for the field to progress.23 A first useful step for to use the health system,22 with the majority of health addressing this might be to systematically explore how literacy research having used instruments measuring it appears in current health literacy research. Hence, reading and numerical skills.23 However, in recent years, by performing a systematic review, our aim was to gain more multidimensional perspectives and instruments insights into how health literacy is defined and measured measuring health literacy have been introduced, such in current health literacy research. In particular, we will as the Health Literacy Questionnaire24 and the Health examine the relationship between health literacy defi- Literacy Survey European Questionnaire 47.25 nitions and instruments. This review may increase our The current and sometimes confusing use of various understanding of potential conceptual and method- and inconsistent interpretations of health literacy is a chal- ological challenges or gaps that need to be addressed in lenge for the development of valid and reliable measure- future research. ments.16 In 2000, Nutbeam proposed a health literacy model that is now widely cited in the health literacy liter- ature and is seen by many health literacy researchers as METHODS useful in analysing health literacy abilities required in This systematic review was conducted in accordance with various health situations.22 According to Nutbeam, health the Preferred Reporting Items for Systematic Reviews and literacy contains three different levels, progressing from Meta- Analyses statement26 and registered in PROSPERO basic skills in reading and writing (functional health (https://www.crd.york.ac.uk/prospero/display_record. literacy), to the ability to derive meaning from different php?RecordID=179699). The review was designed with forms of communication and apply new information to a time frame limited to two randomly selected months changing situations (interactive health literacy) and to in 2019 (March and October). Due to a high number of more advanced cognitive skills which, together with social health literacy articles published every year, random selec- skills, can be applied to critically analyse information and tion was chosen in order to reflect current health literacy Table 1 Overview of study populations in clinical and public health studies Clinical health studies Public health studies Populations classified by diseases and related health problems n Type of study population n Diseases in the circulatory system 11 General population 19 Endocrine diseases 9 Students 13 Mental illness 6 Parents/caregivers 6 Cancer 6 Elderly people 5 Diseases in the respiratory system 4 Immigrants 3 Diseases in the urine and genital organs 4 Work- related populations 3 Infectious and parasite diseases 3 Young adults 2 Diseases in the ear 2 Veterans 2 Diseases in the musculoskeletal system and connective tissue 2 Health personnel 2 Diseases in the nervous system 1 Men 1 Diseases in the digestive system 1 Women 1 Pet owners 1 Pregnancy, birth, postnatal period 1 Relatives of patients with cancer 1 Others: general chronic conditions (n=2), chronic pain (n=3), patients in 10 Churchgoers 1 primary care (n=2), next of kin (n=2), patients in specialist care (n=1) Total 60 Total 60 2 Urstad KH, et al. BMJ Open 2022;12:e056294. doi:10.1136/bmjopen-2021-056294 BMJ Open: first published as 10.1136/bmjopen-2021-056294 on 14 February 2022. Downloaded from http://bmjopen.bmj.com/ on May 16, 2024 by guest. Protected by copyright.Open access Figure 1 Flow diagram shows the study selection process. HL, health literacy. Figure 2 Overview of study designs of included studies. RCT, randomised controlled trial. Urstad KH, et al. BMJ Open 2022;12:e056294. doi:10.1136/bmjopen-2021-056294 3 BMJ Open: first published as 10.1136/bmjopen-2021-056294 on 14 February 2022. Downloaded from http://bmjopen.bmj.com/ on May 16, 2024 by guest. Protected by copyright.Open access remained. All records not published for the first time in 2019 were removed, leaving 414 articles for screening (see online supplemental appendix 1 for the search history). Selection criteria The inclusion and exclusion criteria were developed a priori. The 414 published articles were distributed among six researchers (KHU, AKW, MHA, CRhB, SH and MHL), who worked in pairs. The articles were included if they fulfilled the following inclusion criteria: (1) ‘health literacy’ was mentioned in the title or abstract; (2) the article was peer reviewed; (3) the research was original; (4) it used a quantitative design; (5) it was published in the English language; and (6) the study population included individuals older than 16 years of age. Figure 3 Studies’ continent of origin. To reduce selection bias, the researchers independently screened the articles for eligibility according to the criteria. They then met in pairs to compare their results, research. To ensure that March and October were not resolve any conflicting opinions and decide whether to unique in terms of the number of articles published, we include each article. Conflicting opinions in pairs were performed the same search strategy using the same data- presented and solved by the whole team. bases for one other randomly selected month in 2019. This search yielded nearly the same number of articles. Data extraction (selection and coding) Search strategy To achieve consistency in the data extracted from the Systematic literature searches were conducted in collab- included articles, an Excel V. 2019 spreadsheet was oration with a trained librarian (4 March 2020). The created. The initial question in this spreadsheet was MEDLINE, PsycINFO, ERIC and CINAHL databases were whether health literacy was measured. If the answer was searched for the term ‘health literacy’. For all databases no, the article was excluded. The data extracted from the except for ERIC (where this was not possible), the search articles included information about the study design and was automatically restricted to two randomly selected context, such as country of origin and whether the study months in 2019: March and October. Citations in ERIC was conducted in a public health or clinical health setting. were manually assessed for articles published in March For clinical studies that included participants with health 2019 and October 2019. problems, the different types of diseases were categorised The search yielded a total number of 1038 cita- according to the International Statistical Classification of tions. Endnote V.X9 was used to manage the generated Diseases and Related Health Problems.27 For the public research articles. After removing duplicates, 951 citations health studies, we categorised type of study populations Table 2 Most frequently used references for health literacy definitions in the included studies Reference Definition Studies (n) Category 1 Jorm (1997) ‘Knowledge about appropriate treatment options; and attitudes that facilitate recognition 5 Jorm36 and treatment- seeking’ ‘Knowledge and beliefs about mental disorders which aid their recognition, management or prevention’ American Medical ‘The constellation of skills, including the ability to perform basic reading and numerical 1 Association (1999)39 tasks required to function in the healthcare environment’ Category 2 Nutbeam22 32–34 ‘The cognitive and social skills which determine the motivation and ability of individuals to 19 gain access to understand and use information in ways which promote and maintain good health.’ Sørensen et al14 ‘Health literacy entails people’s knowledge, motivation and competences to access, 14 understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course.’ The Institute of ‘The individuals’ capacity to obtain, process and understand basic health information and 11 Medicine (2004)40 services needed to make appropriate health decisions.’ 4 Urstad KH, et al. BMJ Open 2022;12:e056294. doi:10.1136/bmjopen-2021-056294 BMJ Open: first published as 10.1136/bmjopen-2021-056294 on 14 February 2022. Downloaded from http://bmjopen.bmj.com/ on May 16, 2024 by guest. Protected by copyright.Open access removing duplicates, 951 articles remained. Of the 163 articles that were read in full text, 1 was a duplicate, and 39 were excluded because they did not measure health literacy. Ultimately, 120 articles were included (see figure 1). Characteristics of included studies Sixty articles described studies with a clinical health focus, and 60 were conducted in public health settings. The Figure 4 Studies categorised with the same level of HL clinical studies included a great variety of diseases, but definitions and HL instruments. *Category 1 includes basic the most frequent diseases were those in the circulatory reading and writing skills, disease- specific knowledge and practical skill competences. **Category 2 includes skills to system (n=11) and endocrine diseases (n=9) followed by communicate and interact with healthcare providers and the mental illness (n=6) and cancer diseases (n=6). In the ability to interpret and critically analyse health information. public health studies, the most frequent study group was HL, health literacy. the general population (n=19), looking into aspects such as vaccination programmes, oral care and mental health. . Furthermore, the data included information about Furthermore, a major part of the public health studies whether the instruments were generic or disease specific, included students (n=13), mainly represented by health whether it was used in combination with other health professional students. Six studies focused on parents/ literacy instruments or if a reference was provided for the caregivers, while five studies focused on the elderly popu- instrument. lation.(table 1) The published articles were analysed with respect to The majority of the studies used a cross-s ectional design which health literacy definitions and instruments were (n=90). Nine studies used a randomised controlled used. Before the data extraction, a pilot assessment of design, and 10 studies were quasi-e xperimental. Four of three studies was performed to determine the feasibility the studies used a longitudinal design, while one was a of the data extraction tool. The initial plan was to assess case–control study. Figure 2 presents an overview of all health literacy definitions and instruments for three study designs. categories: (1) functional, (2) interactive and (3) crit- As figure 3 indicates, the majority of studies were ical health literacy, inspired by Nutbeam’ s description of conducted in North America (n=56) and Asia (n=31). different health literacy levels.22 As a result of the pilot The fewest studies were performed in Africa (n=4) and testing, the number of categories was changed due to South America (n=3). difficulties in distinguishing between the two latter levels. All health literacy definitions and health literacy instru- Health literacy definitions and instruments ments were therefore considered in relation to two cate- Out of the 120 included studies, 88 used generic health gories: category 1 included definitions and instruments literacy instruments, while 32 were context-s pecific. describing basic reading and writing skills, disease-s pecific Eleven studies used a combincation of health literacy knowledge and practical skill competencies needed to instruments. A total of 77 studies used instruments from function in everyday situations; and category 2 included category 1 (describing basic reading and writing skills, definitions and instruments that also described health disease- specific knowledge and practical skills), whereas literacy as skills to communicate and interact with health- 43 instruments were from category 2 (describing commu- care providers as well as the ability to interpret and crit- nication and interaction skills and/or the ability to inter- ically analyse health information (online supplemental pret and critically analyse health information). The most appendix 2 illustrates the coding for the data extractions). frequently used health literacy instruments in category 1 The researchers first extracted data and consid- were Newest Vital Sign28 (n=19) and Test of Functional ered independently the definitions and instruments Health Literacy29 (n=13). The most frequently used related to the two categories. They then met in pairs to health literacy instruments in category 2 were The Euro- compare their results and resolve any conflicting opin- pean Health Literacy Survey Questionnaire30 and The ions. The remaining conflicting opinions within pairs eHealth Literacy Scale31 (n=10). were presented and solved by the whole team in a group Of the 120 articles, 79 provided a health literacy defi- meeting. nition. Of these, 46 were public health studies and 33 Patient and public involvement were clinical health studies. Only eight studies provided a No patient was involved. definition addressed to category 1. Five out of these eight studies focused on mental health challenges. The most frequently used reference in category 2 was RESULTS Nutbeam.22 32 33 34 The most frequently used reference The search yielded 1038 articles in total (see the online in category 1 was a definition provided by Jorm and supplemental appendix 1 for the search history). After colleagues.35 36 Table 2 gives an overview of the text in Urstad KH, et al. BMJ Open 2022;12:e056294. doi:10.1136/bmjopen-2021-056294 5 BMJ Open: first published as 10.1136/bmjopen-2021-056294 on 14 February 2022. Downloaded from http://bmjopen.bmj.com/ on May 16, 2024 by guest. Protected by copyright.Open access 6 Urstad KH, et al. BMJ Open 2022;12:e056294. doi:10.1136/bmjopen-2021-056294 )14=n( stnemurtsni dna snoitinfied ycaretil htlaeh fo slevel lautum htiw desirogetac seidutS 3 elbaT noitinfied ycaretil htlaeH ydutS yrogetaC tnemurtsni ycaretil htlaeH yrogetaC ecnerefer ngiseD txetnoc ecnerefer ydutS 1 yrogetaC 1 rekraP( stludA ni ycaretiL htlaeH lanoitcnuF fo tseT trohS 1 lacideM naciremA lanoitces -ssorC lacinilC la te oteN neuheC 92la te coH dA noitaicossA 149102 939991 ,htlaeH no eettimmoC 1 ,yesaC dna ronnoC’O( elacS ycaretiL htlaeH latneM 1 53la te mroJ TCR cilbuP la te hguolC 34)5102 htlaeh 249102 1 ,yesaC dna ronnoC’O( elacS ycaretiL htlaeH latneM 1 53la te mroJ lanoitces -ssorC cilbuP la te hguolC 34)5102 htlaeh 449102 1 htlaeH latneM :txetnoc yduts eht nihtiw depoleveD 1 53la te mroJ lanoitces -ssorC lacinilC la te ohcnoJ eriannoitseuQ ycaretiL 549102 1 gnirusaem eriannoitseuq a gnitadilav dna gnipoleveD 1 9102 ,nollaF’O dna nniF lanoitces -ssorC cilbuP la te dlevthciL cfiiceps -aidem gnirusaem :ycaretil htlaeh latnemnorivne 648102 ,yarG htlaeh 9102 sruoivaheb dna ,sedutitta ,egdelwonk 1 yevruS tnemssessA htlaeH larO alusnineP reppU ehT 1 dna htlaeH fo tnemtrapeD SU lanidutignoL cilbuP 749102 la te eyN 840102 ,secivreS namuH htlaeh 1 .eludehcS egdelwonK htlaeH latneM 1 63mroJ lanoitces -ssorC lacinilC la te nnamdlaW 05)5102 ,nosliW( elacS ycaretiL noisserpeD 940202 1 ,yesaC dna ronnoC’O( elacS ycaretiL htlaeH latneM 1 53la te mroJ lanidutignoL cilbuP la te notsilliW 34)5102 htlaeh 150202 2 yrogetaC 2 35)4002 ,wehC( elacS ycaretiL htlaeH ehT 2 22maebtuN lanoitces -ssorC cilbuP 259102 la te nA htlaeh 2 45srekroW rof elacS ycaretiL htlaeH 2 22maebtuN dohtem dexiM cilbuP 459102 la te izizA htlaeh 2 )UE -SLH( yevruS ycaretiL htlaeH naeporuE ehT 2 41la te nesnerøS lanoitces -ssorC cilbuP la te rettetsdnarB )52la te nesnerøS( htlaeh 559102 2 )42la te nrobsO( eriannoitseuQ ycaretiL htlaeH ehT 2 18991 ,OHW lanoitces -ssorC lacinilC la te nageD 659102 2 naisA rof elacS tnemssessA ycaretiL htlaeH ehT 2 22maebtuN lanoitces -ssorC cilbuP 759102 la te oE 85)5102 ,gnaY dna dnA( nemoW tnargimmI htlaeh 2 trohs—eriannoitseuQ yevruS ycaretiL htlaeH naeporuE 2 41la te nesenerøS lanoitces -ssorC lacinilC la te gnitsnrE ycaretiL htlaeHe ehT dna )3102 la te nesnerøS( mrof 959102 )13rennikS dna namroN( elacS 2 16)6102 la te yaykO( 23 -elacS ycaretiL htlaeH hsikruT 2 22maebtuN TCR cilbuP 069102 la te lanurE htlaeh deunitnoC BMJ Open: first published as 10.1136/bmjopen-2021-056294 on 14 February 2022. 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Downloaded from http://bmjopen.bmj.com/ on May 16, 2024 by guest. Protected by copyright.Open access the most cited health literacy definitions. Words in italics justified by the fact that they are screening tools—that are examples of key words considered important in the is, they are quick, available in an ever-i ncreasing number decision to add the definition to category 1 or category of languages and can be adapted to different settings.37 2. For instance, definitions that described health literacy However, a broad range of skills and tasks covering with terms such as ‘knowledge’, ‘skills’ and ‘attitude’ were functional, interactive and critical domains needs to referred to category 1, while definitions with terms like be included in measures of health literacy in order to ‘appraise’ and ‘social skills’ were referred to category 2. capture the health literacy definitions used.32 In recent Regarding the connection between health literacy defi- years, an increasing number of multidimensional instru- nitions and instruments in the 79 relevant studies, 41 ments have been developed. In our review, The European articles used health literacy definitions and instruments Health Literacy Survey Questionnaire and The eHealth characterised at the same level. Thirty-t hree of these were Literacy Scale, both addressed to category 2, were the in category 2, and 8 were in category 1 (see figure 4 and multidimensional instruments most often used.30 31 In table 3). light of the increased focus on a more multidimensional In the remaining 38 studies, there was a disconnect perspective of health literacy, and the fact that the current between levels of health literacy definitions and instru- review only includes studies from 2019, one could expect ments. In all of these, health literacy definitions were a higher use of multidimensional instruments. Instead, from category 2, and all instruments were in category 1 they represented only 43 out of 120 instruments. (see table 4). Clearly, our study highlights the discrepancy between definitions and measurements as well as the narrow focus of health literacy in a large amount of empirical research. DISCUSSION An important question to raise is therefore how the find- This systematic review aimed to gain insights into how ings from this specific study can guide future research current research defines and measures health literacy strategies to overcome the identified inconsistency. In and, in particular, whether studies consistently used defi- other words, as most health literacy researchers seem to nitions and instruments. The high number of articles base their research on a broad understanding of health published in the defined time frame shows that health literacy, what can be done to facilitate an increased use literacy is of high research interest in both public health of broad measurements? A first step should be to make and the clinical field in large parts of the world. researchers aware about the existing mismatch in current We found a large variety of instruments used, and the research. Furthermore, it seems necessary to develop majority of the included studies (79 out of 120) presented more instruments that can answer the research questions a health literacy definition as part of the study’s theoret- posed. Despite the high number of instruments, there ical background. However, there seems to be an incon- still seems to be a need for questionnaires in the field sistency between the definitions and the instruments in of health literacy that capture more multidimensional a significant number of the studies. In nearly half of the dimensions besides the functional aspects. studies, health literacy was defined in a broad perspective Nutbeam’ s description of three levels of health literacy (including aspects such as social health literacy compe- inspired the categorisation of definitions and instru- tence and the ability to process and appraise health infor- ments.22 Initially, we planned to distinguish among the mation) while using instruments with a more narrow three levels. However, the line between levels 2 and 3 was focus (measuring basic skills and knowledge). As a result, challenging to distinguish. Therefore, it was decided to almost half of the articles in our review lacked data on merge the two latter categories. In a recent publication the participants’ ability to critically appraise health from 2020, Nutbeam has provided a more thorough information and their social health literacy competence description of the three levels with a more detailed expla- despite the fact that the authors had stated such aspects nation of how the levels should be understood.38 Perhaps, to be health literacy. This concern has previously been these descriptions would have contributed to a clearer addressed. Numerous systematic reviews have reported guidance in our work with the categorisation. However, on the diversity of understandings of health literacy and this material was not available at the time of our work the various use of instruments not aligned to the defi- and, in general, this situation illustrates the challenge of nitions in current research.16–21 However, the current adapting a theoretical model into practise. study is, to the best of our knowledge, the first review to The interpretation of terms used in the definitions systematically investigate the relationship between health and instruments that guided the choice of category literacy definitions and instruments from the perspective also represented some challenges. These were resolved of a health literacy model. through discussions both in pairs and as a research team. The use of instruments that focused on functional For instance, definitions describing health literacy using health literacy (addressed to category 1), such as Newest terms like knowledge and ‘beliefs’ were included in cate- Vital Sign and Test of Functional Health Literacy, were gory 1, while definitions using terms such as appraise’ predominant in our review.28 29 This finding corresponds and ‘understand and process’ were included in category with previous findings.19 20 The widespread use of Newest 2. An interesting finding is that, among the eight studies Vital Sign and Test of Functional Health Literacy is providing a health literacy definition from category 1, the Urstad KH, et al. BMJ Open 2022;12:e056294. doi:10.1136/bmjopen-2021-056294 9 BMJ Open: first published as 10.1136/bmjopen-2021-056294 on 14 February 2022. Downloaded from http://bmjopen.bmj.com/ on May 16, 2024 by guest. Protected by copyright.Open access Table 4 Studies categorised with conflicting levels of health literacy definitions and instruments (n=38) Study Health literacy Health literacy Study reference context Design definition reference Category instrument Category Anderson et al Clinical Cross- sectional Defined within the study 2 S- TOFHLA (Parker et 1 209920 context (no reference al29) provided) Avci et al 2019100 Public Cross- sectional US Department of Health 2 NVS (Weiss et al28) and 1 health and Human Services, REALM (Davis, 1993)101 200048 Bonaccorsi102 et al Public Cross- sectional Sørensen et al14 2 NVS (Weiss et al28) 1 2019 health Bonaccorsi et al Public Cross- sectional Sørensen et al14 2 NVS (Weiss et al28) 1 2019 II103 health Carducci et al Public Cross- sectional Ratzan and Parker, 2000 2 TOFHLA (Parker, 1 2019104 health Nutbeam, 200022 1995)29 Chen et al 2019105 Clinical Cross- sectional Nutbeam, 200022 2 Health Literacy Scale 1 for Diabetes (Lee et al 2016)106 de Melo et al Clinical Cross- sectional Cavanaugh, 2011108 2 Short Test of Functional 1 2019107 Health Literacy in Adults (Parker et al29) Flynn et al 2019109 Public Cross- sectional American Dental 2 Oral Health Literacy 1 health Association Council, Adults Questionnaire 2011009 (Sistani et al 2014)111 Gaikwad, 2019112 Public Cross- secttional Ratzan and Parker, 2 Rapid Estimation 1 health 2000113 of Adult Literacy in Dentistry 30- word version (Lee et al 2007)114 Güner et al 2019115 Public Cross- sectional Nutbeam22 2 Developed within the 1 health context of the study Han et al 2019116 Public Cross- sectional Sørensen et al14 2 Assessment of Health 1 health Nutbeam22 Literacy in Cancer Screening (Han et al 2014)117 Himes et al 2019118 Public Cross- sectional Institute of Medicine, US, 2 Chew et al’s (2004) set 1 health Committee HL, 200440 of brief questions53 Irvin et al 2019119 Public Cross- sectional Peters et al 2012120 2 The Water 1 health Environmental Literacy Level Scale (Irvin et al 2019)119 Kaur et al 2019121 Public RCT Healthy People, 2010 2 TS- REALD Two- Stage 1 health (Oral health)122 Rapid Estimate of Adult Literacy (Stucky et al 2011)123 Kim et al 2019124 Public Cross- sectional Ratzan and Parker, 2 Three questions, 1 health 2000113 each addressing oral, listening, and written literacies (no reference) Kim et al 2019125 Public Quasi- experimental Joint Committee on 2 Knowledge questions 1 health National Education developed in the study Standards, 1995126 context Kim et al 2019127 Clinical RCT Institute of Medicine, US, 2 S- TOFHLA (Parker et 1 Committee HL, 200440 al29) Kino et al 2020128 Public Cross- sectional Inst of Medicine, 200440 2 Three indicators of HL 1 health (Haun et al20) Continued 10 Urstad KH, et al. 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Protected by copyright.Open access Table 4 Continued Study Health literacy Health literacy Study reference context Design definition reference Category instrument Category Lin et al 2019129 Public Quasi- experimental Nutbeam, 200022 2 Mandarin Health 1 health Literacy Scale (Lee et al 2011)130 Lindahl et al Clinical Cross- sectional Nutbeam and Kickbusch, 2 The three- item Brief 1 2020131 2000 132 Health Literacy Screen (Cavanaugh et al 2015)133 Mackert et al Public Cross- sectional Berkman et al 2010135 2 NVS (Weiss et al28) 1 2019134 health Mayer et al 2019136 Clinical Cross- sectional Nutbeam33 2 Developed within the 1 context of the study Meyers et al Clinical Cross- sectional Institute of Medicine, 2 NVS (Weiss et al28) 1 2019137 200440 Miranda, 2019138 Clinical Cross- sectional Sørensen et al14 2 REALM-D (Davis, 1993) 1 Mock et al 2019139 Clinical Cross- sectional Institution of Medicine, 2 Single Item Literacy 1 200440 Screening (Morris, 2006), S- TOFHLA (Parker et al29) Mora- Pinzon et al Clinical Cross- sectional Institute of Medicine, 2 S- TOFHLA (Parker, 1 2019140 200440 1995)29 REALM- D (Davis, 1993)101 Noback et al Clinical Cross- sectional Paasche- Orlow et al 2 NVS (Weiss et al 1 2019141 2007,142 Berkman et al 2005)28 2010135, Musculoskeletal specific literacy survey (LiMP questionnaire) developed within the study context O’Conor et al Clincial Cross- sectional Institute of Medicine, 2 S- TOFHLA (Parker et 1 2019143 200440 al29) Penaloza et al Clinical Cross- sectional Nutbeam33 and Institute 2 Short Assessment of 1 2019144 of Medicine, 200440 Health Literacy Spanish (Lee et al 2006)145 Rafferty et al Clinical Cross- sectional Institute of Medicine, 2 Questions focusing 1 2019146 2004 40 and Sørensen on health advice and et al14 information- seeking skills, oral literacy, and print literacy Tavakoly Sany et al Clinical Quasi- experimental US Health Resources 2 TOFHLA (Parker et al29) 1 2019147 and Services Administration Scrivner et al Clinical Cross- sectional Nutbeam, 200834 2 Three questions 1 2019148 assessing health literacy (no reference) Tucker et al Public Quasi- experimental Ratzan and Parker, 2 NVS (Weiss et al 1 2019149 health 2000113 2005)28 Van Wormer et al Public Cross- sectional Institute of Medicine, 2 Oral Health Literacy in 1 2019150 health 200440 Adults Questionnaire (Sistani et al 2013)151 Weaver et al Public Cross- sectional Ratzan and Parker, 2000 2 REALM (Davis, 1993)101 2019152 health Nutbeam22 Continued Urstad KH, et al. 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Protected by copyright.Open access Table 4 Continued Study Health literacy Health literacy Study reference context Design definition reference Category instrument Category Zhong et al 2020153 Clinical Cross- sectional Kindig, 2004154 2 NVS (Weiss et al 1 2005)28 Williams et al Clinical Cross- sectional Institute of Medicine, 2 NVS (Weiss et al 1 2019155 200440 2005)28 Winokur et al Clincial Cross- sectional Morrison et al 2013157 2 NVS (Weiss et al 1 2019156 2005)28 NVS, Newest Vital Sign; RCT, randomised controlled trial; REALM, Rapid Estimate of Adult Literacy in Medicine; REALM-D , Rapid Estimate of Adult Literacy, Dutch Version; S- TOFHLA, Short Test of Functional Health Literacy in Adults; TOFHLA, Test of Functional Health Literacy in Adults. majority (n=5) were in the context of mental health. The to be important in the initial understanding of the concept predominant reference in these studies was the defini- recognised in the studies. This gap should be taken into tion provided by Jorm and colleagues, who, unlike others, consideration in future health literacy research. We hope defined health literacy as being linked to beliefs and ‘atti- our work contributes to making explicit where the problem tudes’.35 36 Whether these terms are more closely linked might be rooted and that it can be useful in the discussion to mental health literacy challenges, compared with other about strategies for moving forward to better align health more ‘physical’ health literacy issues, is not clear but literacy measurement with definitions of health literacy. would be interesting for further investigation. Another aspect worth noting is that we discovered Author affiliations that many publications did not cite the primary source 1Department of Quality and Health Technology, University of Stavanger, Stavanger, Norway of the health literacy definitions but instead referred to 2Faculty of Health Sciences, VID Specialized University, Oslo, Akershus, Norway secondary sources (other researchers presenting defini- 3Department of Interdisciplinary Health Sciences, University of Oslo, Oslo, Norway tions of health literacy). Referring to the original sources 4Department of Transplantation Medicine, Oslo University Hospital Rikshospitalet, should be the first choice and would perhaps make it Oslo, Norway easier for readers to recognise the definition’s affiliation. 5Department of Behavioural Sciences in Medicine, University of Oslo, Oslo, Norway 6Lovisenberg Diaconal University College, Oslo, Akershus, Norway The present study has some limitations. First, this study 7Lovisenberg Diakonale Hospital, Oslo, Norway was designed to analyse and describe health literacy 8Faculty of Health Scienes, Oslo Metropolitan University, Oslo, Norway research in two randomly selected months. This period 9Department of Health and Nursing Sciences, University of Agder, Kristiansand, may not be representative of health literacy research Norway in general. However, a large number of health literacy studies are published every year. A random selection can Contributors KHU, MHA and AKW initiated the project and wrote and revised the manuscript. KHU led the project. KHU, MAH, AKW, SH, CRB and MHL designed therefore give a good picture of health literacy research. the study, selected the articles and extracted the data. All authors contributed to Second, we did not conduct a quality assessment screening drafting the manuscript and met authorship criteria. KHU had full responsibility for of the included studies. This was considered less relevant the work and the conduct of the study, had access to the data, and controlled the for the current study as the aim of the current study was decision to publish. to explore connections between health literacy defi- Funding The Centre for Advanced Study in Oslo, Norway, funded and hosted our nitions and instruments rather than to assess method- research project, The Body in Translation: Historicising and Reinventing Medical Humanities and Knowledge Translation, during the 2019/2020 academic year. ology. Furthermore, searches were limited to the English language only. It is possible that similar studies may have Competing interests None declared. been published in languages other than English. Patient consent for publication Not applicable. The current review included only quantitative measure- Ethics approval This study does not involve human participants. ments. However, qualitative approaches might provide Provenance and peer review Not commissioned; externally peer reviewed. valuable and more in-d epth insights into the field. For Data availability statement Data are available upon reasonable request. future research, it would be interesting to also explore Supplemental material This content has been supplied by the author(s). It has how qualitative research links health literacy definitions not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been to the research questions posed. peer- reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content CONCLUSION includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, There seems to be an inconsistency between the definitions terminology, drug names and drug dosages), and is not responsible for any error and the instruments used in a significant part of current and/or omissions arising from translation and adaptation or otherwise. health literacy research. This situation raises the risk of Open access This is an open access article distributed in accordance with the missing information about health literacy that was considered Creative Commons Attribution Non Commercial (CC BY- NC 4.0) license, which 12 Urstad KH, et al. BMJ Open 2022;12:e056294. doi:10.1136/bmjopen-2021-056294 BMJ Open: first published as 10.1136/bmjopen-2021-056294 on 14 February 2022. Downloaded from http://bmjopen.bmj.com/ on May 16, 2024 by guest. Protected by copyright.Open access permits others to distribute, remix, adapt, build upon this work non-c ommercially, 25 Sørensen K, Van den Broucke S, Pelikan JM, et al. Measuring health and license their derivative works on different terms, provided the original work is literacy in populations: illuminating the design and development properly cited, appropriate credit is given, any changes made indicated, and the use process of the European health literacy survey questionnaire (HLS- EU- Q). BMC Public Health 2013;13:948. is non- commercial. See: http://creativecommons.org/licenses/by-nc/4.0/. 26 Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. ORCID iD BMJ 2021;372:n71. 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