{"id":81119,"date":"2016-06-07T01:48:45","date_gmt":"2016-06-07T01:48:45","guid":{"rendered":"http:\/\/healthmedicinet.com\/i\/strategies-for-disseminating-recommendations-or-guidelines-to-patients-a-systematic-review\/"},"modified":"2016-06-07T01:48:45","modified_gmt":"2016-06-07T01:48:45","slug":"strategies-for-disseminating-recommendations-or-guidelines-to-patients-a-systematic-review","status":"publish","type":"post","link":"http:\/\/healthmedicinet.com\/i\/strategies-for-disseminating-recommendations-or-guidelines-to-patients-a-systematic-review\/","title":{"rendered":"Strategies for disseminating recommendations or guidelines to patients: a systematic review"},"content":{"rendered":"

In total, we identified 47 articles that met the inclusion criteria, 43 through the
\n SLR and 4 through the hand search. After reading the full text, 21 articles were included
\n in this review (see Fig.\u00a01<\/a>). The articles are published between 2002 and 2014 but most of them are published
\n between 2010 and 2014 (15). Most of the articles are published in 2013 (8 articles).
\n The articles are mainly about the field of rheumatology, asthma\/COPD and diabetes.
\n The authors are from the Canada (7), Europe (7), USA (5), Russia (1) and Africa (1).<\/p>\n

\"thumbnail\"Fig. 1.<\/strong><\/a> Flowchart\n <\/p>\n

Most of the 21 papers can be described as opinion papers or papers that describe strategies
\n that have been used or might be effective. Only a small amount of papers are based
\n on a RCT or a survey or qualitative study. The 21 papers were assessed for the level
\n of evidence and were scored level 3 (descriptive studies, such as comparative studies,
\n correlation studies or case-control studies) or 4 (expert committee reports or opinions;
\n Table\u00a02<\/a>). Only one study was assessed as having a level of evidence of 2B (controlled study).
\n Although Cochrane suggests to exclude descriptive papers, editorials or opinion papers,
\n we have included those papers because of the lack of articles with a level of evidence
\n of 1 (meta-analysis of randomised controlled trials) or 2 (single randomised controlled
\n trials). The analysis of the articles showed that, besides information about dissemination
\n to patients or patient organisations, many articles paid attention to patient involvement
\n in dissemination. This result section will, therefore, address both themes: information
\n on dissemination to patients or patient organisations and patient involvement in dissemination.<\/p>\n

Table 2.<\/strong><\/a> Characteristics of selected papers\n <\/p>\n

Dissemination to patients or patient organisations<\/h4>\n

Dissemination plan<\/h4>\n

The search gives insight in three main factors that may make the dissemination of
\n recommendations towards patients more successful. The first factor concerns the development
\n of a dissemination plan 21<\/a>], 22<\/a>]. An adequate strategy requires, according to Boulet et al. 6<\/a>] and Allu et al. 21<\/a>], a dissemination plan that is ideally developed in parallel with the development
\n of the recommendations; the plan should be made during the project and not at the
\n end of the project 6<\/a>], 21<\/a>]. A dissemination plan is needed to clarify at the start of the project the target
\n audience, which will subsequently determine the scope, objectives, format, style and
\n wording of the recommendations as well as the tools for dissemination 22<\/a>].\n <\/p>\n

Lay version<\/h4>\n

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

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

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

Combining strategies<\/h4>\n

The third factor that may lead to better dissemination is the simultaneous use of
\n multiple tools and strategies. The use of different approaches can help to increase
\n awareness and use among target populations 26<\/a>].\n <\/p>\n

Lay versions, as described above, are expected to reach individual patients. However,
\n a study of Snyman suggests that just making a lay version is not enough to achieve
\n this goal because most printed health messages do not transfer information successfully
\n to target audiences 25<\/a>]. The use of passive dissemination strategies, such as a leaflet or brochure, has
\n proven to be insufficient to educate patients or change daily routine because such
\n information does not endure in the long term 23<\/a>]. Snyman\u2019s study shows that strategies to disseminate lay versions need to be accompanied
\n by the development of other materials. Several papers confirm that dissemination requires
\n a combination of different, mutually reinforcing strategies (e.g. 6<\/a>], 21<\/a>], 26<\/a>], 27<\/a>]), for example, the repetition of key messages from different credible sources such
\n as well-known professionals. Boulet et al. mention, based on their own experiences,
\n the combination of the following strategies: organising press conferences, providing
\n lay versions through Public Libraries, developing books to reach children and developing
\n posters with \u2018trigger\u2019 stickers or making a website endorsed by a VIP 6<\/a>].\n <\/p>\n

Patient organisations can furthermore organise an annual national forum on a disease
\n at which people share their experiences and take part in training and education programmes.
\n Patient organisations can also provide telephone and online counselling and literature
\n and other resources for patients and caregivers 6<\/a>]. Allu et al. suggest to disseminate recommendations by providing automatic updates
\n of new information and resources for patients who have signed in, by interactive internet-based
\n lectures and by developing a variety of learning tools like posters, summaries, handouts,
\n pocket cards and slide sets for patients 21<\/a>]. Education to patients should furthermore be pro-active whereby face-to-face and
\n contact by telephone can be used 28<\/a>], just as education events for patients 29<\/a>]. The use of internet and digital tools like websites and apps seems to be promising
\n and necessary to reach patients 30<\/a>], 31<\/a>]. Guidelines should be easily searchable and accessible immediately 30<\/a>], 31<\/a>]. Another option is, according to Boulet et al., the development of community \u2018champions\u2019:
\n through train-the-trainer sessions, community leaders are trained to become \u2018champions\u2019.
\n Those champions assist in the dissemination of information to patients 6<\/a>]. Knowledge brokers can also be used. Knowledge brokers are persons who bridge the
\n gap between researchers and the end users 32<\/a>]. Allu et al. stress the importance of patient associations. Patients should be encouraged
\n to become a member of the association and receive information and other support 21<\/a>].\n <\/p>\n

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

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

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

In conclusion, in order to be as successful as possible, dissemination strategies
\n should be characterised by developing a dissemination plan at an early stage, developing
\n a lay version and using multiple dissemination strategies to reach the patients. The
\n overriding principle to make recommendations accessible for patients and to ensure
\n that they are comprehensible and fit the context is that the dissemination strategy
\n suits the target audience. It is stressed by several authors that this can best be
\n achieved by direct involvement of the target audience: patients and their organisations
\n 22<\/a>]\u201325<\/a>], 36<\/a>]. How patients and their organisations can be involved is described below.\n <\/p>\n

Patient involvement<\/h4>\n

In developing recommendations<\/h4>\n

Several authors stress, based on their own experiences and ideas 1<\/a>], 22<\/a>]\u201325<\/a>] or a qualitative study among professionals 36<\/a>], the importance of the involvement of patients or patient organisations in the design
\n and development of recommendations to enhance the dissemination of recommendations
\n in health care and to local patient organisations. Patients should be involved from
\n an ethical point of view: involvement is needed to give patients influence on the
\n recommendations by incorporating their experiential knowledge and perspectives. The
\n involvement of patients, if done properly, increases the comprehensiveness of the
\n recommendations because patients use other words and less jargon compared to professionals
\n and their involvement makes the adaption of the recommendations to the target population
\n easier because of their \u2018patient knowledge\u2019 22<\/a>], 23<\/a>], 37<\/a>].\n <\/p>\n

An international working group of researchers, health professionals and patient representatives
\n of the Guidelines International Network (GIN) has developed a toolkit about patient
\n involvement in guidelines. The GIN supports patient involvement in guideline activities
\n around the world. The toolkit is the result of a series of consultations, a literature
\n review and the practice and experience of the GIN members 38<\/a>].\n <\/p>\n

In developing lay versions<\/h4>\n

There are different ways that patients or patient organisations can be involved in
\n making a lay version 1<\/a>]. EULAR has chosen to involve patients from different countries because of the international
\n context of the recommendations. They have experienced that the involvement of patients
\n with different native tongues enhances the likelihood that the lay version can be
\n easily understood by many patients and that an English lay version can easily be translated
\n into various languages because typical English phrasings are avoided. The GIN toolkit
\n suggests that the translation of the English lay version in different languages should
\n be done by patient organisations, using a heterogeneous group of patients with different
\n disease status and educational levels 38<\/a>]. Other authors 39<\/a>] suggest to use a participatory (action) research (PAR) in order to involve patients
\n in the development of guidelines\/lay versions. Using such a PAR design may, according
\n to the authors, result in culturally appropriate brochures for patients 39<\/a>].\n <\/p>\n

In disseminating recommendations<\/h4>\n

Van Eijk and colleagues state that a successful change of clinical practice in accordance
\n with the recommendations requires an adequate or even better effective implementation
\n strategy in which the key stakeholders delivering and receiving care (among others
\n patients) are involved in the dissemination 40<\/a>]. National patient organisations should, according to the GIN toolkit, disseminate
\n the recommendations in their own countries. This can be done by using their own website,
\n newsletters, brochures, other publications, phone calls, support groups, workshops,
\n events, seminars, annual conferences, local or regional events, events for professionals
\n and\/or patients, press releases, print-ready ads, fillers or by including the recommendations
\n in their information packages provided to their members 38<\/a>]. Personal stories of patients in media can also help to raise awareness of new recommendations
\n 38<\/a>].\n <\/p>\n

Who should be involved?<\/h4>\n

The GIN toolkit suggests that patients who have participated in the development of
\n the recommendations can also actively contribute to the dissemination process 38<\/a>]. Another suggestion is the establishment of permanent groups, networks or \u2018virtual
\n panels\u2019 of patients 38<\/a>]. The network members are alerted when new recommendations or patient versions are
\n published. They can raise awareness by distributing lay versions to health professionals,
\n patients, patient organisations and members of the public. The network should in this
\n case include members with different backgrounds.\n <\/p>\n

Conditions for involvement<\/h4>\n

Patients involved in the dissemination process have specific needs that should be
\n taken into account. The GIN toolkit suggests (1) informing patients about their role
\n before participating, (2) clarifying expectations about the specific role of the patients
\n and the time commitment required, (3) giving a training in advance to prepare patients
\n for their assigned role and (4) supporting patients during the process 38<\/a>]. The training could be in technical areas such as how to understand the terminology
\n or how to take part in the group effectively (e.g. assertiveness) 38<\/a>]. Supporting patients can be done by providing networking opportunities for individuals
\n or by providing a buddy 38<\/a>].\n <\/p>\n

Suggestions to make patient involvement more successful<\/h4>\n

Three suggestions aimed at creating patient involvement in the development and dissemination
\n of recommendations are described in the literature. The first suggestion is the use
\n of selection criteria in choosing patient representatives 22<\/a>]. A criterion may be the ability to consider the evidence objectively and to make
\n recommendations that do not depart from preconceived views or self-interests 22<\/a>]. Second, involve patients in less traditional ways (e.g. as committee member) and
\n choose for more innovative ways such as the use of new media that better fit the patients\u2019
\n role, expectations and capabilities. The development group may not include a consumer
\n representative but may invite patients to review draft documents or attend a group
\n meeting or internet forum to share their perspectives 22<\/a>]. The third suggestion is training: provide patients with sufficient information and
\n knowledge before and during the project. This empowers them to become effective partners
\n in the dissemination and implementation process 38<\/a>].\n <\/p>\n","protected":false},"excerpt":{"rendered":"

In total, we identified 47 articles that met the inclusion criteria, 43 through the SLR and 4 through the hand search. After reading the full text, 21 articles were included in this review (see Fig.\u00a01). The articles are published between 2002 and 2014 but most of them are published between 2010 and 2014 (15). Most Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[],"tags":[],"class_list":["post-81119","post","type-post","status-publish","format-standard","hentry"],"_links":{"self":[{"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts\/81119","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/comments?post=81119"}],"version-history":[{"count":0,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts\/81119\/revisions"}],"wp:attachment":[{"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/media?parent=81119"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/categories?post=81119"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/tags?post=81119"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}