Patients with low literacy in primary care in the Netherlands: need to support the general practitioner?

Transcription

1 Patients with low literacy in primary care in the Netherlands: need to support the general practitioner? Student: Anne van Ee Student number: Supervisor: Dr. Maria E.T.C. van den Muijsenbergh Department: Eerstelijnsgeneeskunde Radboudumc Period: 3 February April 2014 Report: draft paper Total amount of words: 2889

2 Patients with low literacy in primary care in the Netherlands: need to support the general practitioner? Anne van Ee, Maria E.T.C. van den Muijsenbergh Abstract Introduction: Low literacy is a common problem in the Netherlands (10% of the population). Low literates report more often a weak or bad health, have an increased risk of hospital admission, suffer more often from chronic diseases and self-management is difficult for them. Among non-western migrants in the Netherlands, the rate of low literacy is even higher (30%). Language barriers however impede the recognition of low literacy in these groups as well as the communication. In the Netherlands, the GP is the gatekeeper to all other forms of healthcare, and plays an important role in treatment and guidance for people with chronic diseases. Therefore, it is important GPs are capable to recognize their low literate patients and communicate in an effective way with them. The aim of this study is to get insight into the extent general practitioners feel equipped to recognize low literacy in their patients and communicate effectively with them, and into their needs regarding training in and support for this communication. Method: In March 2014, a sample of 300 Dutch GPs were invited by to complete an online questionnaire. The data were analyzed using descriptive statistics with SPSS version 22. Results: The net response rate was 34%. Three-quarters of the GPs experience problems during their work with low literates (74%). They find it hard to recognize low literacy among non-dutch speaking migrants. One third of the GPs record low literacy in the electronic patient record (35%). More than half the GPs is not familiar with one of the tools developed to support the GPs during their work (57%); 81% of this group express their need for support. Also half of the GPs who are familiar with the existing tools, needs more material support (50% of 44). Most GPs want more or more extensive training in communication with this group. After the abolition of financial rewards for professional interpreters, the use of professional interpreters by GPs has dropped substantially. Conclusion: Despite the tools already developed to support GPs during their work with the low literate, nearly all GPs still feel the need for more support and training in recognition of and communication with low literate patients. They are willing to spend money and time on the improvement of this communication. Dutch organizations for GPs and for healthcare equity could help with the development and dissemination of tools and trainings tailored to the needs of GPs. 1

3 Introduction Low literacy is a common problem in the Netherlands. Ten percent of the Dutch population between 16 and 65 years is low literate. 1 This means they are not capable to read, write and calculate on such a level to function adequately in social situations. On top of that, percent only have limited literacy skills and for them it is still hard to digest more complex information, such as graphics and forms. 1 Of this group of low literates, one third are non-western migrants 2, which means that migrants are overrepresented in the group of low literates, as only 11 percent of the Dutch population consists of non-western migrants. 3 Low literacy is also a common problem among the youth. Among those following senior secondary vocational education in the year 2007, 57 percent did not reach the required language level. 4 Low literates report more often a weak or bad health than high literates and they have an increased risk of hospital admission. 5 6 In the group of elderly, the low literates have an times higher mortality risk than high literates. 7 Low literates more often suffer from chronic diseases, such as asthma or diabetes mellitus. 8 At the same time self-management is more difficult for them; they often miss the skills required to self-manage a chronic disease. Effective communication with and support of self-management in these groups require more efforts and often different skills from healthcare professionals. 9 And besides all these negative consequences on the health of patients, according to Groot et all, low literacy in primary care costs almost 20 million euro. 8 In the Netherlands, the General Practitioner (GP) is the gatekeeper to all other forms of healthcare, and plays an important role in treatment and guidance for people with chronic diseases. Also, every citizen is registered in a general practice. Therefore, it is important GPs are capable to recognize their low literate patients and communicate in an effective way with them. Dutch organizations of GPs (LHV 10 and NHG 11 ) and the national center of expertise on health disparities Pharos, developed different tools and training initiatives to support GPs in their care for patients with low literacy. These tools include: the LHV Toolkit, with information on recognition and recording of low literacy and tips for the communication, the AOF website providing information about low literacy and health care and the tool for patient education Begrijp je Lichaam. There are also some other websites available in the Netherlands with information about low literacy or with visual aids for patient education. However, it is not clear yet to what extent GPs feel equipped to recognize low literacy in their patients, to communicate effectively with this group and to make use existing support tools, nor if there are any further needs to support the GP regarding low literacy of patients. This information will be relevant to adapt or develop tools and training initiatives about low literacy for GPs. This is important, because good communication between the patient and the GP is the keystone for effective care. In the end, effective communication with low literate patients can help to decrease complications and adverse events due to misunderstandings or lack of effective self-management in the chronic ill and will decrease the costs of our healthcare. For low literate migrants who do not speak Dutch sufficiently to make themselves understood, or to understand their GP, tools for communication with the low literate will not be enough. For them professional interpreters are necessary during consultation. However, in 2012, the Dutch government abolished the financial reimbursement for professional interpreters in healthcare. There are indications the use of professional interpreter services in General practice dropped dramatically. In 2014 Dutch organizations of healthcare professionals, including GPs, accepted a new quality norm regarding the communication with non-dutch speaking patients. 12 This norm describes when professional interpreters are needed in healthcare consultations. No data however are available on characteristics of GPs in relation to their use, and changes in use, of professional interpreter services. 2

4 There for we conducted a quantitative explorative study to answer the following research questions: - To what extent do GPs in the Netherlands feel equipped to recognize low literacy in their patients, and to communicate effectively with them? - To what extent are they familiar with existing tools to support communication with low literate patients, and to what extent do they use these supports? - What needs for training in and supports for the communication with low literate patients do GPs have? - To what extent did GPs change their use of professional interpreters after the Dutch government stopped paying for these services? 3

5 Subjects and methods Participants For the purpose of this explorative study, a sample of 300 GPs in the Netherlands were approached form the network of the research group. These GPs varied in sex, age, and geographic location. The amount of low literate and migrant patients is much higher in practices in deprived areas, and special efforts (in training and making available supporting tools) are made for GPs working in these areas. Therefore, deliberately more GPs working in these areas were approached for this survey: half of the 13Fout! Bladwijzer niet gedefinieerd. sample, where less than 10% of all Dutch GPs work in these areas. Questionnaire Data were collected through an online survey, made available by using ThesisTools 14, in March The participants received an with a covering letter describing the aims of the study and containing a direct link to the online survey ( All GPs who were approached were sent a reminder after 2 weeks. The questionnaire was based on a literature search about low literacy and on already existing tools, developed to support GPs in their work with the low literate. The questionnaire started with general information on respondents sex, years of experience, estimated amount of low literate patients and non-western migrants in their practice and postal code of their practice (which made it possible to distinguish GPs working in deprived areas). Next, the questionnaire collected information on the recognition and registration of low literacy, the knowledge and use of different tools developed to support GPs in their work with the low literate, and further needs for support and training. The last questions asked about the use of professional interpreters. Statistical analysis The data were analyzed using descriptive statistics with SPSS version 22. 4

6 Results Response and general information Of the 300 GPs surveyed, 119 (39,7%) responded. A total of 102 (net response rate 34%) GPs completed the entire questionnaire. In the group of respondents, 40 are male and 62 female (table 1). The average years of work experience is 18,5 years and 32% is working in a deprived area (table 1). 15 In table 2 you can see an overview of the number of low literates and first generation migrants amongst the patients of the respondents. Sex N of respondents % of respondents % of GPs in the Netherlands 13 Male 40 39% 57% Female 62 61% 43% Practice in deprived area Yes 33 32% 10% No 62 61% No zip code 7 7% Years of experience <3 years 7 7% 3-9 years 12 12% years 40 39% >20 years 42 41% Not filled in 1 1% Table 1: general information GPs Low literates N of respondents % of respondents amongst patients (recorded) <5% 1 1% 5-9% 0 0% 10-30% 4 4% >30% 2 2% Low literates amongst patients (estimated) <5% 11 11% 5-9% 12 12% 10-30% 58 57% >30% 14 14% First generation migrants amongst patients 0-5% 28 28% 5-10% 34 33% 10-30% 31 30% >30% 9 9% Table 2: low literates and migrants 5

7 Recognition and recording of low literacy Almost all the GP s (98%) are familiar with the concept low literacy. Most GPs use patient contact and educational level to recognize low literacy (table 3). Nearly one third of GPs do not know how to recognize low literacy among their migrant patients. Only one third of the GPs record low literacy in the HIS, the electronic patient record system used by GPs in the Netherlands (35%). There is no big difference between GPs working in deprived areas and those who does not. Those not working in a deprived area record even more (40 vs. 33%). In most cases (78% of 36) it is the GP him/herself who does the recording. Low literacy is mostly (61% of 36) recorded as a medical problem, with an ICPC code attached, otherwise it is recorded in a special patient memo. ICPC codes mentioned are A97, Z04, Z07, Z07.01, Z29 and Z64. Reasons why GPs don not record low literacy in the HIS are: they do not know how to do it (56% of 66), they do not have time for it (36% of 66) or they think it is unnecessary (8% of 66). Three-quarters of the GPs experience problems in their communication with patients who are low literate (74%). Ways to recognize low N of respondents % of respondents literates amongst all patients Patient contact (no specific 84 82% tools) Educational level 38 37% LHV Toolkit 10 10% Another way 12 12% Ways to recognize low literates amongst migrants I don t know how 31 30% Look to handwriting 17 17% Make use of a professional 26 26% interpreter Behaviour 46 45% Another way 42 41% Table 3: ways to recognize the low literate (more than one answer possible) Use of tools designed for recognition of or communication with low literate patients More than half of all GPs is not familiar with one of the four tools we asked about (57%). Of these tools, the GPs are most familiar with the LHV toolkit (59%). Second is the tool for patient education Begrijp je Lichaam (51%), third the website AOF Amsterdam (40%) and fourth different other websites with education tools for the low literate (24%). However, being familiar with a tool, does not necessarily mean they also use it; about one quarter of the GPs use the toolkit LHV (22% of 60), one-third use the website AOF Amsterdam (32% of 41) and half of the GPs use the different websites with education tools for the low literate (50% of 24). Two-third is using the tool Begrijp je Lichaam (60% of 52), but one-third of this group is only using it sometimes (31% of 52), one-fifth once a month (19% of 52) and one-tenth once a week (10% of 52). The GPs prefer the physical education tool above the digital education tool (87% resp. 13%). In general, there are no big differences in the knowledge nor use of tools between GPs working in deprived areas and those not working in deprived areas (table 4). 6

8 Working in deprived area Not working in deprived area LHV Toolkit Know it 64% 55% Use it 19% 24% Begrijp je Lichaam Know it 58% 50% Use it 58% 58% AOF Amsterdam Know it 36% 39% Use it 42% 25% Different websites Know it 27% 19% Use it 44% 50% Table 4: difference in use of tools between GPs working in deprived area yes or no The use of visual material Almost three-quarters of the GPs use visual material to explain a disease or a treatment (72%). But from this group more than one-third think the supply of visual material is insufficient (38% of 73). The most important reasons for not using visual material are the conviction of the GP that he/she can make his/herself clear without visual material (31% of 29) and other reasons (52% of 29), of which most mentioned is lack of time. Most GPs are willing to spend more time and money on the use of materials to improve the care for the low literate (80 resp. 81%). Medical education training Almost half of the GPs did have medical education training about low literacy during their career (45%). GPs working in deprived areas did have a little more medical education training (55 vs 42%, sig ). About one-third think this training was not enough to improve their communication with low literate patients (28% of 46), they express a wish for more profound training or follow-up by e-learning, for peer review and individual follow-up as well as for experts to consult (table 5). N of GPs who followed medical education training % of GPs who followed medical education training More profound training 4 31% Peer review with colleagues 2 15% Individual follow-up 2 15% Expert to ask questions 4 31% E-learning to practice 5 39% Table 5: learning demands of GPs who followed training on low literacy (more than one answer possible) When we take a look at the group that never had medical education training about low literacy, about two-third say they need that kind of training (62% of 56). They prefer face-to-face training (43% of 35) above e-learning (23% of 35) or a combination of both face-to-face and e- learning (34% of 35). Further needs for support Nearly all (81%) GPs who are not familiar with the tools express a need for material support for their communication with low literate patients. (81% of 58) and even most GPs familiar with these tools want more supports (50% of 44).Tools to recognize low literacy are most wanted, but also advice about registration, tools on paper, websites and movies for the patient are popular (table 6). 7

9 Support to recognize low literacy Advice about registration of low literacy GPs familiar with tools need the following support: GPs not familiar with tools need the following support: Yes No Yes No 12 (55%) 10 (46%) 33 (70%) 14 (30%) 10 (46%) 12 (55%) 29 (62%) 18 (38%) Support on paper 11 (50%) 11 (50%) 22 (47%) 25 (53%) Support on 15 (68%) 7 (32%) 30 (64%) 17 (36%) websites Movies for patients 13 (59%) 9 (41%) 24 (51%) 23 (49%) Movies for me 8 (36%) 14 (64%) 15 (32%) 32 (68%) Podcasts 3 (14%) 19 (86%) 4 (9%) 43 (92%) Apps 8 (36%) 14 (64%) 14 (30%) 33 (70%) Other 5 (23%) 17 (77%) 2 (4%) 45 (96%) Table 6: needs to support (more than one answer possible) The use of professional interpreters Nearly a quarter of all respondents never made use of professional interpreters (24 %), most of them always asking family or friends of the patient to translate (63% of 24). After the abolition of financial rewards for professional interpreters, only a small group of GPs who ever made use of professional interpreters, did not change this (16%), One-third of the other GPs still make use of professional interpreters, but to a lesser extent (31%), with a mean of 1,7 times per month now compared with 4,7 times before. The other one-third have stopped using professional interpreters at all (29%). Before the abolition they made use of professional interpreters 2,1 times per month. In table 7 you can see the use of professional interpreters compared to the percentage of migrants in general practice. No change in use professional interpreters Use of professional interpreters changed to a lesser extent Do not made use of professional interpreters anymore Never made use of professional interpreters Total <10% 9 (15%) 16 (26%) 23 (37%) 14 (23%) 62 (100%) migrants 10-30% 6 (19%) 12 (39%) 5 (16%) 8 (26%) 31 (100%) migrants >30% migrants 1 (11%) 4 (44%) 2 (22%) 2 (22%) 9 (100%) Table 7: Use of professional interpreters compared to percentage of migrants in general practice 8

10 Discussion To our knowledge, this is the first study about the experiences and wishes of GPs in the Netherlands concerning their communication with low literacy patients. Also, since the abolition of financial rewards for professional interpreters in the year 2012, there are no studies yet in GP about the differences in use of professional interpreters before and after this abolition. The main results of our study are: - Three-quarters of the GPs experience problems during their work with low literates (74%). - One third of the GPs record low literacy in the electronic patient record (35%). - More than half the GPs is not familiar with one of the tools developed to support the GPs during their work (57%); 81% of this group express their need for support. - Half of the GPs who are familiar with the existing tools, needs more material support (50% of 44). - After the abolition of financial rewards for professional interpreters, the use of professional interpreters by GPs has dropped substantially. In our study many GPs identify low literacy during their patient contact or by asking about the level of education. However, these do not seem to be the most effective ways. Previous studies showed that clinicians are often unable to identify low literate patients based on information gathered during a consult Furthermore, the questions Can you read? or How many years of school did you complete? does not accurately predict if a patient is low literate yes or no. The question How confident are you filling out medical forms by yourself?" is probably the best way to detect low literates. 18 Worldwide, there are tools developed to recognize low literacy, such as the Rapid Estimate of Adult Literacy in Medicine (REALM) 19, Test of Functional Health Literacy in Adults (TOFHLA) 20, and the Newest Vital Sign 21. In the Netherlands, there are also a few tools developed to support GPs during their work with low literates 22. The finding that the respondents only make use of these tools to a limited extent is in concordance with previous studies that showed that despite the availability of different tools for use in health care settings, most clinicians do not screen for low literacy due to a lack of time and/or the potential of embarrassing patients. 23 Since 2012 the Dutch government no longer pays for the use of professional interpreters in healthcare. Patients or health professionals now have to pay for these services. Our study indicates that even among the selected group of GPs working in deprived areas and willing to participate in this study, the use of professional interpreters already was low, but has dropped dramatically since This could endanger the quality of care. A systematic review by Flores describes the consequences when professional interpreters are not used. Patients who need but do not get professional interpreters have a poor self-reported understanding of their diagnosis and treatment plan and frequently wish their health care provider had explained things better. And when GPs use family or friends as interpreters, they misinterpret half of all GPs questions, are more likely to commit errors with potential clinical consequences, have a higher risk of not mentioning medication side effects, and ignore embarrassing issues when children are used as interpreter. 24 We therefore recommend that all GPs get acquainted with the recently developed quality norms for consultations with non-dutch speaking patients 25 and that training will be developed for GPs and for the vocational training of GPs to work with this norms. A strength of our study is the high response rate, especially among GPs working in deprived areas in whoms experiences we were most interested. They work a lot with low literates and therefore know a lot about the problems experienced working with them. A limitation of the study is the limited sample size (300 of all 8879 GPs in the Netherlands) and the lack of insight in the non-respondents. It is possible that GPs without experience working with low literates may not have felt drawn to participating. Also, in the group of respondents, there are more women and less men compared to all GPs in the Netherlands (table 2). 13 9

11 Three-quarters of the GPs in our survey experience problems during work with the low Fout! Bladwijzer literate. These problems will have negative consequences concerning the communication niet gedefinieerd. and therefore negative consequences concerning the care of the low literate. More research is needed to get insight into the nature of these problems. Organizations (Pharos, LHV, NHG,) that develop and disseminate tools and training for GPs on communication with low literate patients can use the results of this study to adapt their tools and training to the needs of GPs. This will include more specific guidance for the recognition and recording of low literacy, the provision of more visual aids to support patient education, and the development and implementation of more profound and repeated training with the possibility of expert consultation. Conclusion Despite the tools already developed to support GPs during their work with the low literate, nearly all GPs still feel the need for more support and training in recognition of and communication with low literate patients. They are willing to spend money and time on the improvement of this communication. Dutch organizations for GPs and for healthcare equity could help with the development and dissemination of tools and trainings tailored to the needs of GPs. 10

12 References 1. Fouarge D, Houtkoop W, Van der Velden R. Laaggeletterdheid in Nederland. Amsterdam; Expertisecentrum Beroepsonderwijs; Bekker MH, Lhajoui M. Health and literacy in first- and secondgeneration Moroccan Berber women in the Netherlands: ill literacy? Int J Equity Health. 2004;3:8. 3. Centraal Bureau voor de Statistiek, Den Haag/Heerlen Gerrits R. Taalachterstand van mbo-leerlingen al langer een bron van zorg. Ook de les autotechniek gaat over taal. De Volkskrant 9 oktober Mirjam P. Fransen, Vanessa C. Harris en Marie-Louise Essink-Bot.Beperkte gezondheidsvaardigheden bij patiënten van allochtone herkomst: alleen een tolk inzetten is meest al niet genoeg. Ned Tijdschrift Geneeskunde. 2013;157: A Baker DW, Parker RM, Williams MV, Clark WS. Health literacy and the risk of hospital admission. J Gen Intern Med Dec;13(12): Baker DW, Wolf MS, Feinglass J, Thompson JA, Gazmararian JA, Huang. J. Health literacy and mortality among elderly persons. Arch Intern Med. 2007;167: Groot W, Maassen van den Brink H. Stil vermogen, een onderzoek naar de maatschappelijke kosten van laaggeletterdheid. Den Haag: Stichting Lezen & Schrijven; Sudore RL, Schillinger D. Interventions to Improve Care for Patients with Limited Health Literacy. J Clin Outcomes Manag Jan 1;16(1): National association of General practitioners in the Netherlands. 11. Dutch College of General Practitioners NHG. 12. KNMG/Pharos: kwaliteitsnorm tolkgebruik bij anderstaligen in de zorg Nivel. Cijfers uit de registratie van huisartsen, peiling Nederlands instituut voor onderzoek van de gezondheidszorg W. Devillé, T.A. Wiegers. Nivel. Herijking stedelijke achterstandgebieden Bass PF, Wilson JF, Griffith CH, et al. Residents ability to identify patients with poor literacy skills. Acad Med. 2002;77: Lindau ST, Tomori C, Lyons T, et al. The association of health literacy with cervical cancer prevention knowledge and health behaviors in a multiethnic cohort of women. Am J Obstet Gynecol. 2002;186: Wallace LS, Rogers ES, Roskos SE, Holiday DB, Weiss BD. Brief report: screening items to identify patients with limited helath literacy skills. J Gen Intern Med Aug;21(8): Davis TC, Long SW, Jackson RH, et al. Rapid estimate of adult literacy in medicine: a shortened screening instrument. Fam Med. 1993;25: Parker RM, Baker DW, Williams MV, et al. The test of functional health literacy in adults: a new instrument for measuring patients literacy skills. J Gen Intern Med. 1995;10: Weiss BD, Mays MZ, Martz W, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med. 2005;3: LHV. Toolkit laaggeletterdheid: toolkit voor omgang met laaggeletterden in de huisartsenpraktijk Brez SM, Taylor M. Assessing literacy for patient teaching: perspectives of adults with low literacy skills. J Adv Nurs. 1997;25: Glenn Flores. The Impact of Medical Interpreter Services on the Quality of Health Care: A Systematic Review. Med Care Res Rev 2005; 62; Kwaliteitsnorm tolkgebruik bij anderstaligen in de zorg. KNMG