Strategies for disseminating recommendations or guidelines to patients: a systematic review

What dissemination strategies are feasible to inform and educate patients about recommendations or guidelines?

This systematic literature review (SLR) followed the process recommended by the Centre of Reviews and Dissemination [13]. The scope of the SLR was discussed by a EULAR Task Force representing eight countries, covering all regions of Europe. It comprised seven patient experts, six health professionals (three rheumatologists, three health professionals) and one dissemination expert. The group followed the EULAR Standardized Operational Procedures [14] and met twice.

The search terms and strategies were discussed in the research team (TA, MB, KS, MdW). A review protocol was developed by KS and JK, based on the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement [15]. PubMed, Ebsco/PsycInfo, Embase.com and Ebsco/Cinahl were searched on 4 February 2016, all from inception, by KS and JK. The following terms were used (including synonyms and closely related words) as index terms or free-text words: ‘guidelines’ or ‘recommendations’ and ‘dissemination’ and ‘patients’ or ‘consumers’. The full search strategies for all databases can be found in Additional file 1. Searches were not restricted by language, publication type or date.

Duplicate articles were excluded. All languages were accepted. A search in the grey literature was added, using the method of ‘communication with experts’ and ‘snowballing’ [16, 17]. The reference lists of articles from the search that fit the criteria were scanned for missing papers.

To be included in our final article, the article had to refer to (1) guideline(s) or recommendation(s), (2) dissemination, (3) dissemination with patients/patient organisations and (4) dissemination for patients/patient organisations. Criteria 1 AND 2 were mandatory together with criteria 3 OR 4.

After deleting duplicates, all articles (title and abstract) were screened for inclusion, independently by two reviewers (KS and MB). Discrepancies were resolved by discussion, supported by two of the authors (TA and MdW). Abstracts that met the inclusion criteria were selected for detailed, full text review. Reasons for exclusion were dissemination towards professionals instead of patients/patient organisations. The selected abstracts were complemented by articles and grey literature identified through a hand search.

We found qualitative studies, surveys, descriptive studies, opinions, editorials and conference abstracts. Because of the nature of these studies, a statistical synthesis was not appropriate. Therefore, a content analysis [18] was done and themes were extracted, using codes. Both reviewers (KS and MB) conducted the analysis separately and then explored similarities and differences between the studies. The research team then synthesised and interpreted the evidence as it related to the purpose and aims of the review.

Two reviewers independently assessed the methodological quality of included studies (KS, MB). The Quality Assessment Tool for Quantitative Studies was used for assessing the quality of the quantitative studies [17] (see Additional file 2). This tool leads to an overall methodological rating (strong, moderate or weak) taking important elements into account such as selection bias, study design, confounders, blinding, data collection methods, withdrawals/dropouts, intervention integrity and analysis [17].

We used the Quality Assessment Tool for Qualitative Studies to assess the methodological quality of the qualitative studies [19] (see Additional file 3). Five aspects were taken into account: the aims of the research; research methods and design; sampling; data collection and analysis and results, discussion and conclusions. This tool has similarities with the tool for assessing quantitative research and is recommended by Cochrane.

The level of evidence was categorised according to the design characteristics of available studies using an established hierarchy [20] (see Table 1).

Producing a lay version of the original recommendations is the second factor that may improve the dissemination of recommendations [6]. A lay version enables patients to better understand the goals of treatment, the different treatment options and the benefits and risks of each option. Patients who have access to lay versions are better equipped to prepare themselves for the consultation with their health care provider and are expected to become an active partner in their own treatment [6].

Boulet et al. recommend to take the following aspects into account when developing a lay version. First, the message should be customised to the target audience. The information should be made relevant for the target audience, patients in this case. Furthermore, the information in the recommendations should be consistent, unambiguous and credible [6]. A successful lay version provides clear, explicit and specific information [6, 23] and some key messages [2]. The information in the lay version has to be readable for patients. A well-known pitfall is that information is often too difficult for the general public [24, 25] and in particular for less literate persons [25]. Information can be simplified by using less medical and technical terms or by giving an explanation of the terms [24]. McGuire et al. stress the fact that patients do not speak the same language as health professionals [24]. Only after a while, they will become more familiar with the language spoken by professionals [24]. Based on a survey among professionals, McGuire et al. further recommend the use of familiar words of one or two syllables, the use of active voice in the present tense and the use of short sentences of 15 words or less, and short paragraphs of ten lines or less [24]. Finally, information about where more in-depth information can be found should be included in the lay version [6, 23].

For international guidelines, lay versions of guidelines should ideally be translated into different languages. Based on international recommendations and best practices, Azevedo and colleagues [26] suggest to follow three steps for the translation and cross-cultural adaptation of guidelines: forward translation, back translation and patient testing. In the forward translation step, two professionals/patients (no translators) independently translate the original version into the target language. The translations are then compared, and an agreed version is drawn up between the translators and those involved in the development of the original version. In the back translation step, the text is translated back into the original language with the support of the developers of the original version. It is then compared with the original and reviewed to ensure conceptual equivalence. The last step is the patient test phase. Ten adult patients are given the translated version and are interviewed about the interpretation and wording of each item. The results are reviewed, and any changes are integrated into the third and final version [26].

The third factor that may lead to better dissemination is the simultaneous use of multiple tools and strategies. The use of different approaches can help to increase awareness and use among target populations [26].

Lay versions, as described above, are expected to reach individual patients. However, a study of Snyman suggests that just making a lay version is not enough to achieve this goal because most printed health messages do not transfer information successfully to target audiences [25]. The use of passive dissemination strategies, such as a leaflet or brochure, has proven to be insufficient to educate patients or change daily routine because such information does not endure in the long term [23]. Snyman’s study shows that strategies to disseminate lay versions need to be accompanied by the development of other materials. Several papers confirm that dissemination requires a combination of different, mutually reinforcing strategies (e.g. [6, 21, 26, 27]), for example, the repetition of key messages from different credible sources such as well-known professionals. Boulet et al. mention, based on their own experiences, the combination of the following strategies: organising press conferences, providing lay versions through Public Libraries, developing books to reach children and developing posters with ‘trigger’ stickers or making a website endorsed by a VIP [6].

Patient organisations can furthermore organise an annual national forum on a disease at which people share their experiences and take part in training and education programmes. Patient organisations can also provide telephone and online counselling and literature and other resources for patients and caregivers [6]. Allu et al. suggest to disseminate recommendations by providing automatic updates of new information and resources for patients who have signed in, by interactive internet-based lectures and by developing a variety of learning tools like posters, summaries, handouts, pocket cards and slide sets for patients [21]. Education to patients should furthermore be pro-active whereby face-to-face and contact by telephone can be used [28], just as education events for patients [29]. The use of internet and digital tools like websites and apps seems to be promising and necessary to reach patients [30, 31]. Guidelines should be easily searchable and accessible immediately [30, 31]. Another option is, according to Boulet et al., the development of community ‘champions’: through train-the-trainer sessions, community leaders are trained to become ‘champions’. Those champions assist in the dissemination of information to patients [6]. Knowledge brokers can also be used. Knowledge brokers are persons who bridge the gap between researchers and the end users [32]. Allu et al. stress the importance of patient associations. Patients should be encouraged to become a member of the association and receive information and other support [21].

When different sources and tools are applied over a longer period, the dissemination can be described as most adequate because information will last longer when seen and heard more often [6]. There is less information about the impact of the use of different strategies. The reviewed publications provide clear descriptions of the used or recommended dissemination strategies, but it is mostly unknown to what extent these strategies were effective. We do, however, know that event-based knowledge mobilisation may be effective for the initial dissemination of guidelines. For sustainable adaptation, more efforts are needed [29].

The literature also describes a study in which patient outcomes were improved by the dissemination of guidelines through didactic educational meetings, a printed guideline and a patient brochure [33], but we do not know which of these elements has resulted in the improvements.

To choose the right dissemination strategies means thus to combine passive and active strategies. According to Jeong et al., it is thereby necessary to take cultural differences into account [34] and to make versions bilingual in countries in which people speak different languages [20]. A lack of attention to cultural differences can lead to products or programmes that do not meet the needs or possibilities of the target audience. One of those issues is the risk that the programmes do not fit the recipient in terms of their unique culture. Success in one country does not guarantee success in other countries [34], or even within countries if there are significant cultural differences within countries. This is confirmed by the GRADE guidelines that emphasise the importance of the context. Guidelines developed for resource-rich countries are often inapplicable in resource-poor countries [35]. Here, careful consideration should be given to social and cultural sensitivities and differences like hierarchal culture, working according to plans or not [34], or the presence of certain professionals (for example specialised nurses) or health resources [34]. Therefore, the first step in any effort to reach a new public is to thoroughly understand the culture and cultural diversity of the target audience. Adaptation of the recommendations to the local situation may be needed [34].

In conclusion, in order to be as successful as possible, dissemination strategies should be characterised by developing a dissemination plan at an early stage, developing a lay version and using multiple dissemination strategies to reach the patients. The overriding principle to make recommendations accessible for patients and to ensure that they are comprehensible and fit the context is that the dissemination strategy suits the target audience. It is stressed by several authors that this can best be achieved by direct involvement of the target audience: patients and their organisations [22‐25, 36]. How patients and their organisations can be involved is described below.

The strength of this systematic review is the fact that it for the first time focuses solely on the target group of patients and patient organisations, a target group previously often ignored. A limitation might be the low level of evidence of most included articles. This has been the result of our inclusion criteria. Because we expected to find a small number of relevant articles, we chose to be inclusive regarding their methodological quality. For this reason, the results of this review should not only be handled with care, it should also encourage researchers to initiate evaluation studies that will provide knowledge about the effectiveness of dissemination strategies with higher levels of evidence.