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… for the National Monitoring System, to be developed together with researchers involved in Development and … of the effectiveness of treatment. It is vital for deciding on further steps in the implementation process to …-82500002Multisystemic Therapy (MST) is an intensive home- and community-based treatment for youth who show serious, violent and chronic antisocial behavior (Borduin et al., 1995; Henggeler et al.,1992; Henggeler et al., 1997). Since 2004, MST has been implemented on a small-scale basis in The Netherlands. From 2006, in order to ensure availability of a (potentially) successful treatment all over The Netherlands, a large-scale implementation of MST will be conducted. The reasons for the choice of this treatment are first, its strong theoretical foundation and second, empirical support for its effectiveness from controlled clinical trials in the USA (Curtis, et al., 2004; Henggeler et al., 2002). Notwithstanding these positive indications, there are also reasons for caution. A recently published review by Littell (2005) has questioned the conclusion that MST is effective by pointing out that inconsistent and incomplete reports have been published. Also, with few exceptions (Ogden & Halliday-Boykins, 2004; Timmons-Mitchell et al., 2006), most of the empirical support comes from studies conducted by the same group of researchers who also developed and implemented MST. There is a clear need for confirmation of these results by an independent team of researchers. Even more importantly, due to the differences between the two countries in social and political climate, organization of mental health services, availability of different treatments, type and ethnic background of clients, etc., it is not known whether the same positive results will be obtained here. A first prerequisite for effectiveness is that treatment is implemented as intended. Therefore, we first examine the quality of implementation of MST in The Netherlands: What is the degree of treatment integrity? Are all components of the MST multilevel quality assurance system included? Is targeted population of MST recruited and retained? What are the referral paths and the reasons for case discharge? Next, we examine factors, including organizational and service system characteristics, client- and therapist characteristics, that might affect treatment integrity. These questions will be answered by analyzing data from a non experimental study (one-group-only design): all (new) MST teams and their clients will provide information for the National Monitoring System, to be developed together with researchers involved in Development and Implementation Trajectory and researchers evaluating Functional Family Therapy (FFT). Data will be gathered immediately prior to the beginning of treatment (T1, pre test assessment), immediately after treatment (T2, post test assessment) and 6 months after the end of treatment (T3, follow up). Although a non experimental, one-group design, will provide valuable information regarding the implementation process and factors that affect successful implementation, this design does not allow examination of the effectiveness of treatment. It is vital for deciding on further steps in the implementation process to obtain information on the effectiveness of MST in the Netherlands as soon as possible. In order to prove that a treatment has effects and that the observed benefits are due to the intervention, rather than to chance or to confounding factors (such as passage of time, the effects of psychological assessment, presence of different types of clients in the experimental and control conditions, etc.), a design in which clients are at random assigned to experimental and control group, randomized control trail (RCT), is “conditio sine qua non”. The current project, building on our prior research (Dekovic et al, 2004; Asscher et al., 2006), aims to examine whether MST produces outcomes that are superior to the comprehensive treatments already available (“treatment as usual”) in The Netherlands, when conducted independently of the program developers and program executors. In this part of the study only teams who are experienced in the MST (i.e. who have been involved in MST for longer than a year) will participate, in order to control for the starting difficulties in using the new treatment model. In addition to data from National Monitoring System, interview and observational data will be collected. Primary outcomes include: recidivism and the rate and seriousness of antisocial behavior and other types of problems (internalizing, substance use). Intermediary (secondary) outcomes include: adolescent competence, family functioning and peer relations. Finally, we will determine circumstances in which MST yield or does not yield beneficial outcomes by examining possible treatment moderators: treatment integrity and client- and therapist characteristics. These findings will provide guidelines for matching clients to the treatment and suggestions as to which part (if any) of the MST needs to be adapted to Dutch circumstances.Universiteit UtrechtProf. dr. M. Dekovic
In dit onderzoek werd de implementatie en effectiviteit van Multisysteem Therapie (MST) onderzocht bij adolescenten met antisociaal gedrag en hun gezinnen. Een gerandomiseerde gecontroleerde trial (RCT) werd uitgevoerd waarbij at random 147 adolescenten werden toegewezen aan MST en 109 aan de gebruikelijke zorg. Tijdens huisbezoeken werden vragenlijsten aan jongeren en ouders voorgelegd direct voor de behandeling (T1, voormeting), direct na de behandeling (T2, nameting), en 6 maanden na afloop van de behandeling (T3, follow-up). Ook werden tijdens de behandeling maandelijks interviews afgenomen bij jongeren en hun ouders. Daarnaast werden recidivegegevens opgevraagd. De resultaten van de implementatie studie lieten zien dat de export van MST naar Nederland als succesvol kan worden gezien. In de effectiviteitstudie werden op de korte termijn (nameting, direct na behandeling) en lange termijn (follow-up, zes maanden na behandeling) positieve effecten gevonden voor MST met een etnisch heterogene steekproef voor wat betreft ouder en adolescent rapportage over probleemgedrag, opvoeding, kwaliteit ouder-adolescent relatie, cognities, en relaties met vrienden. Met betrekking tot recidive werden echter geen verschillen gevonden in effectiviteit tussen MST en gebruikelijke behandeling twee jaar na de behandeling. In het algemeen bleek MST even effectief voor adolescenten met een verschillend etnische achtergrond, leeftijd, en ernst van problematiek. Het bleek echter van belang om MST op maat te maken voor adolescenten met hoge niveaus van ongevoelige trekken en narcisme om even effectief te kunnen zijn voor deze adolescenten. Tot slot vonden we een sterke bevestiging voor de veronderstelling van MST dat verbetering in opvoedgedrag, vooral meer consistente discipline, één van de cruciale elementen is om positieve resultaten te bewerkstelligen.
Dit project over Multisysteem Therapie (MST) onderzoekt de behandeling voor jongeren met delinquent gedrag. De MST-therapeut komt een aantal keer per week thuis gedurende vijf maanden. De therapeut behandelt niet alleen de jongere, maar ook het gezin, en factoren binnen school/werk, vrienden, en de buurt. Ook wordt onderzocht of MST gegeven wordt zoals het oorspronkelijk bedoeld is (behandelingsintegriteit). En er wordt nagegaan of MST effectief is: worden jongeren nadat ze MST kregen minder delinquent dan jongeren met een andere behandeling? Is MST ook bruikbaar voor de behandeling van gezinsproblemen of problemen met vriendschappen? Verder wordt er bekeken voor welke jongeren en onder welke omstandigheden MST het beste werkt en hoe MST op zichzelf werkt. Zorgt MST, bijvoorbeeld, voor een betere ouder-kindrelatie, waardoor de jongeren meer sociaal ingestelde vrienden krijgen en vervolgens minder delinquent gedrag. De bevindingen zullen belangrijke gevolgen hebben voor de selectie en behandeling van jeugdige delinquenten.
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Background The management of chronic disease in general practice such as cardiovascular disease (CVD) or diabetes requires a high level of active patient involvement since the patient is often confronted with decisions concerning diagnostic and treatment options, lifestyle and self-management. Particularly patients with limited health literacy are more likely to have a poor understanding of their chronic disease and unfavourable outcomes. Therefore, it is important for General Practitioners (GPs) to involve them into the decision process with clear and transparent information, typically in situations where different valid interventions are available, and where the best option is dependent on the context and values of the patient. One crucial step in the process of shared decision making (SDM) is providing trustworthy information about a set of options, the so-called ‘option talk’. ‘Option talk’ entails to not only inform patients on what options for intervention are available, be it on screening, diagnosis, treatment, or self-management, but it also refers to inform the patient on the accompanying pros - the benefits -and cons - the harms and treatment burden - of each option and their probabilities. This type of communication is referred to as ‘risk communication’ in scientific literature. What is the problem? Despite theoretical insights in preferred risk communication formats, the option talk and risk communication in daily clinical practice remains a major challenge for clinicians. This is even more true in consultations with people with limited health literacy. Patient decision aids (PtDAs) have shown to support ‘option talk’ and risk communication within SDM. The Netherlands is one of the leading countries in SDM. Over 250 Dutch PtDAs are currently available, some of which may be more tailored to patients with limited health literacy than others, e.g. due to effective co-creation with patients with limited health literacy (best practices). Aim and objectives For limited health literate patients with increased risk on chronic diseases, we seek to answer the following questions: 1. What is the current state of the art in key literature on how to communicate the meaning of options and accompanying pros/cons (risk communication) in option talk during consultations, and how to tailor PtDAs to the needs of these patients? 2. What is the current state of risk communication in Dutch PtDAs according to insights in the key literature, and what are lessons learned from innovative best practices in PtDA development, to improve option talk and risk communication? Methods Our research has a strong focus on involving key stakeholders. Representatives of the Netherlands Patient Federation, Pharos, and Dutch College of GPs have been involved from scratch, in designing this proposal. In this one-year study we will firstly perform a systematic literature review on the topic option talk and risk communication in the context of SDM in limited health literate patients and subsequently we will analyse existing Dutch PtDAs concerning their risk communication sections and its performance regarding the criteria that will be established based on the literature review. To discuss the applicability of the findings for tailoring risk communication and PtDAs to the needs of limited health literate patients in daily clinical practice, three homogeneous focus groups will be held. 1) With experts in the field of SDM and risk communication and/or health literacy; 2) with GPs and practice nurses regularly confronted with patients who have limited health literacy and 3) with patients with limited health literacy. The findings of the literature review and PtDA analysis will be translated to and illustrated by two patient cases (e.g. CVRM and diabetes, to be decided) to serve as an input for the focus group interviews. The focus group interviews will be analysed according to qualitative content analysis. This will help to clearly elucidate the gap between theory of option talk and risk communication in limited health literacy patients and application of those strategies in clinical practice. Deliverables: • Insights from the literature on strategies to support effective option talk and risk communication, accounting for limited health literacy, in the context of SDM on preference-sensitive healthcare decisions. • Insights from best practices in existing Dutch PtDAs with regard to adapting option talk and risk communication to limited health literacy. • Interpretation of both sources of insight, to illustrate possible promising strategies for improving option talk and risk communication in clinical practice and in PtDAs, validated in focus groups with professionals and patients. • Final set of recommendations for practice for the Dutch quality criteria on risk communication for patient-directed knowledge tools and for further research on option talk and risk communication in the consultation with limited health literate patients.
Results
We included 28 relevant scientific publications from which we distracted the following insights:
- Only describing the probabilities on positive and negative outcomes in a verbal manner, e.g. ‘your risk on hospitalisation is small’, is confusing as each person gives another meaning to the term ‘small’. It is preferable to describe the probabilities on positive and negative outcomes with numbers such as ‘2 out of 100 patients like you will be hospitalised’.
- People who have difficulty in understanding numbers due to limited numeracy may benefit from illustrations with visuals and drawings.
- It is important to important to present the information on the pros and cons as neutral as possible. For example; ‘2 out of 100 patients like you will be hospitalised. This also means that 98 out of 100 patients will not to be hospitalised’. This is also referred to as neutral framing.
To answer the question we have also analysed how options and risks are communicated in the patient decision aids that were available for the Dutch patients in 2021. We included 199 patient decision aids. Most patient decision aids report the probabilities on positive and negative outcomes with both words and numbers. Often the information was not framed in a neutral manner. Many patient decision aids visualise the numeric probabilities, e.g. with a population diagram (icon arrays) of 10 by 10 puppets to visualise the number of 100. Most patient decision aids use too many and too difficult words. Patient decision aids usually use table formats to list the treatment options and the positive and negative outcomes. Few patient decision aids, less than 2% of the total, were developed together with patients with limited health literacy. These patient decision aids used illustrations to describe the treatment options. The more detailed information on pros and cons was presented stepwise in small doses per option. The table format was not used in these decision aids.
The lessons that we have learned have been discussed in focus group interviews with general practitioners, experts and patients with limited health literacy. It was concluded that the doctor needs to be well informed of the patient’s context in order to be able to share decision-making. The patients expressed to really want to be informed about all available options. The preference to be informed with details about the probabilities on positive and negative outcomes differs between patients.
This project has resulted in a list of recommendations on how doctors can inform patients with limited health literacy about probabilities of medical options. These recommendations are especially important for health care professionals and developers of patient decision aids.
Recommendations
Recommendations for clinicians and developers of patient decision aids for SDM with patients with limited heath literacy
It must be considered that these recommendations have different levels of evidence. For some recommendations tailoring to the individual person is highly relevant as the group of “people with limited health literacy” is diverse. It may e.g. relate to functional illiteracy (difficulties in writing and reading skills), to numeracy or graph illiteracy, or to critical illiteracy (analyze information critically).
General aspects of shared decision making
- People with limited health literacy are not easy to identify. Try to sense the level of health literacy of the patient by using tools such as the teach back-method. Do not purposefully hand papers upside down to the patient. Use the information from the patient file.
- SDM is an iterative process, and the patient context should be well considered. There is always a gap between receiver (patient) and transmitter (doctor). It is the task of the doctor to see where the gaps are and to try to find a common level for the communication process. Take time to get to know the context of the patient. Clarify their knowledge about the diagnosis and what the patient needs to make a decision.
- Different risk communication strategies result in different risk perceptions influenced by various literacy skills. Be aware that people with limited health literacy are in general less likely to understand risk information correctly.
The option talk within shared decision making
- Present all options to the patient.
- Consider information overload. Use a layered approach when giving information. Opt for next consultation for further deliberation or deciding if the situation allows to do so.
- Consider that risk communication can fan fear in people with limited health literacy. Explore how much detail on risk and benefits the patient wants to know.
- Suggest patient to bring a relative or friend to the consultation.
- Offer patient to make notes or to audiotape the consultation.
Use of information material
- Consider computer skills of patient, also offer printouts.
- Walk through the information material together with the patient.
- Use illustrations, small amount of text, short sentences, clear layout, large letter types.
- Consider that the matrix format of tables to present options and their risks and benefits (fact sheet/keuzekaart) might be too difficult for subgroups of people with limited health literacy and needs to be further explained. The matrix format might be too difficult for people who have difficulties in writing and reading skills (functional illiteracy).
Risk communication
- People with limited numeracy tend to assign higher probabilities to low-frequency labels, and significantly lower probabilities for high-frequency labels compared to people with higher numeracy. Avoid use of verbal risk description only as it can lead to misinterpretation.
- Risk information is perceived as less risky when positively framed and as riskier when negatively framed. People with limited numeracy seem more susceptible to framing than people with high numeracy. Visual formats reduce or eliminate the framing effect. Use neutral framing.
- People with limited numeracy tend to show denominator neglect leading to inaccurate estimates. Equal denominators sizes can support better understanding. Use natural frequencies rather than percentages. Use same size of denominator, such as x-in-100 or x-in-1000. Avoid 1-in-x- format such as 1 in 5.
- Icon arrays can improve accuracy of absolute and relative risk reduction. But consider the numeracy and graph literacy of the person. For people with limited graph literacy visual risk information is not always useful. Visual risk communication strategies should be as simple as possible.
- Combine numerical with visual risk communication.
- Icon arrays seem to work best with smaller denominators (<100). Whereas bar charts might perform better for medium (100–499) and large (500–999) numerators. Icon arrays helped to eliminate denominator neglect. Use icon arrays to give a gist and consider the denominator size. (Gist representation = Getting an idea of the underlying message without exactly understanding numerical details of the risk message.)
- Risk ladders seem difficult to understand for people with limited health literacy. Do not use contextualization e.g., comparison with a daily risk as they lead to confusion.
- Adding verbal explanations of how to interpret visual information might help participants with low numeracy to use risk information.
Maastricht Universitair Medisch Centrum PlusAfbeelding
General Practitioner care
More knowledge from research into general practice is needed in order to maintain the current high standards of general practitioner research and care. Therefore, we fund projects designed to develop and evaluate knowledge and put it into practice, and research into the best form of disease prevention, care and support in general practice. Read more about our activities.prof. dr. G.D.E.M. van der WeijdenSamen beslissen met de patiënt is vaak wenselijk. Zeker als er meer mogelijkheden zijn om de ziekte van de patiënt te behandelen.Bij samen beslissen legt de arts aan de patiënt uit welke mogelijkheden er zijn om te behandelen. De arts legt de voor- en nadelen van de behandel-mogelijkheden uit. En hoe vaak die voorkomen. Het gaat bijvoorbeeld om de kans op genezing na 1 jaar behandelen (voordeel), en het risico op ziekenhuisopname als bijwerking van de behandeling (nadeel).Deze uitleg wordt ook wel 'risico-communicatie' genoemd. We weten dat artsen moeite hebben deze uitleg goed te geven. Zeker als de patiënt ook moeite heeft om dit soort informatie te begrijpen. Hoe kunnen we kansen en risico's zo simpel mogelijk uitleggen?Om deze vraag te beantwoorden lezen we literatuur over risico-communicatie. We kijken hoe keuzehulpen voor patiënten kansen en risico's uitleggen. We beschrijven de lessen die we hieruit leren over simpele uitleg. En bespreken deze samen met patiënten en experts in 3 focusgroepen.
