Participatory decision-making (PEF for short) has established itself in recent decades as a desirable form of interaction between doctor and patient. The concept is primarily based on the ethical principles of autonomy and care.
Participatory decision-making (PEF for short) has established itself in recent decades as a desirable form of interaction between doctor and patient. The concept is primarily based on the ethical principles of autonomy and care.
In the internationally recognized diabetes guidelines, the agreement of individual therapy goals, the consideration of contextual factors and participatory decision-making are becoming increasingly important. While the frequently cited “Decision Cycle” from the consensus document of the ADA and EASD deals with the decision cycle at a higher level of abstraction and the NDMG (National Disease Management Guideline) considers specific aspects, especially for type 2, the following explanations will consider the transfer of individual aspects for type 1 in more detail.
“Even if different diseases are sometimes subsumed under the diagnosis of diabetes mellitus, participation and involvement in all relevant areas of life appear to be permanently restricted for those affected, a common problem across all types of diabetes.”
Author’s statement of the S3 LL, 2023 [1].
The authors of the S3 guideline “Treatment of type 1 diabetes” refer to and explicitly quote the German National Disease Management Guideline (NVL Diabetes mellitus type 2, S3 guideline from 2021 [2]), in which around 40 specialist societies have come together under the umbrella of the German Medical Association for recommendations on a separate chapter that should represent the standard in counseling, care and education.
Language is important
The authors of the DM type 1 guideline also refer to a consensus report by EASD and ADA from 2022 [3], which, under the heading “Language matters”, calls on practitioners to see communication between people living with diabetes and members of the treatment team as the heart of integrated care. The language used in diabetes care should be neutral and free of stigmatization. Recommendations must be evidence-based and focus on the strengths of those affected, be respectful and inclusive. For example, people living with diabetes should not be referred to as “diabetics” and should not be described as “non-compliant” or held responsible for their state of health.
Language Matters has already been published as a position paper on patient-friendly language in medicine for people with diabetes mellitus from Germany.
For many years, society has been discussing the power of words and communication. The use of language also has a profound influence on how people with diseases such as diabetes mellitus are seen, discussed and treated in society. Starting in English-speaking countries, “Language Matters Diabetes” has developed into a global movement that has now also arrived in Germany and Switzerland. Diabetology plays a visionary and progressive role in medicine as a whole: it is the first medical specialty in which people treating and living with diabetes have come together with the German Diabetes Association (DDG), diabetesDE – Deutsche Diabetes-Hilfe and the diabetes online community #dedoc°, among others, to jointly develop a position paper on sensitive language.
The benefits of the individual target agreement lie in the increase in individual needs, targeted therapies, satisfaction with the treatment and should increase adherence and improve the relationship of trust between patient and doctor.
The compatibility of therapy with everyday life is made possible and the treatment burden for those affected should be kept to a minimum. The ethical principle of patient autonomy also speaks in favor of this approach.
PEF and type 1 diabetes
The strong recommendations 4-1 and 4-2 of the S-3 guideline (2023) concern the quality of individual collaboration as follows: The physician should choose language in the care of people with type 1 diabetes that is free of stigma and based on facts, is respectful, and is person-centered conducive to collaboration (recommendation 4-1). People with type 1 diabetes and their doctor should agree and prioritize individual treatment goals together initially and repeatedly during the course of the disease (recommendation 4-2) [1]. People with type 1 diabetes should be taught how to assess the carbohydrate content of the meals they eat.
In addition to age and life expectancy, factors influencing the individual therapy goals are the values and life situation of the person affected and therefore their quality of life. The improvement in quality of life through the type of therapy used to achieve the goal (e.g. use of glucose monitoring technology) and individual skills and barriers (e.g. cognitive abilities) are important factors. It is therefore also important in connection with the therapy goal agreement to address its concrete implementation through possible therapeutic measures (see recommendation 1-5).
If the counseling team wants to achieve person-centered approaches for individual therapy goals without pursuing stigmatization in the context of nutrition, the environment should be kept in mind. In order to make the most of the quality of life with the technical glucose monitoring available today, insulin therapy is optimally coordinated with nutritional behavior. In terms of participation, this is achieved by focusing on a well-founded nutritional history.
What is the effect of individual target agreements?
The guideline group sees the benefit of the individual target agreement in the plausible opportunity to increase satisfaction with the treatment and adherence, to improve the relationship of trust between patient and doctor and to make it possible to reconcile the therapy with everyday life and to keep the treatment burden as low as possible for those affected. The ethical principle of patient autonomy also speaks in favor of this approach. There is no direct evidence to refute the fact that an individual target agreement requires more time in the consultation. However, there is robust data for the use of decision aids and participatory decision-making that these interventions are usually not associated with more time [4,5].
This seems to be partially extrapolable to the situation of the target agreement. On the basis of this weighing up of benefits and harms and the supply problem described above, the guideline group makes a strong recommendation. Good doctor-patient communication also has the advantage that people with diabetes understand medical information more easily because they have the confidence to ask questions.
Based on a population-based German study (Kora study), it was shown that a positive relationship between people with diabetes and the doctor/diabetes team is associated with increased adherence and psychological quality of life in the people studied [6].
The perception of successful communication is often assessed differently by the doctor/diabetes team and people with diabetes. This was demonstrated in the DAWN study [7]. While the majority of doctors stated that they had discussed the impact of diabetes on their lives in conversations with people with diabetes, only one in five people with diabetes said they had done so. The DAWN2™ study [8] was conducted from March 2012 to September 2012 and was able to show that mental well-being is reduced in people with diabetes compared to the general population. Diabetes patients in Germany have a reduced quality of life and a lower level of well-being compared to the general population. Despite this negative impact of the disease on quality of life, psychosocial aspects are relatively rarely addressed in diabetes care. A global comparison shows a high level of treatment satisfaction and a high training rate. The level of social discrimination is remarkably high, but lower than in international comparison.
Needs
It is also important that the person and their background, needs, perceptions and expectations are recorded as part of diabetes therapy, as these are crucial for successful communication between the doctor/diabetes team and the person affected. What needs could these be in the context of everyday nutrition?
- Accept invitations and enjoy cake in the afternoon, for example.
- Having and entertaining guests without sacrificing food.
- Allow ravenous appetite and choose wisely
or cover with insulin. - Celebrate without disturbing your blood sugar levels.
- Celebrate and enjoy your vacation with a different kind of food.
- Enjoy leisure time without provoking hypoglycemia.
According to Elwyn et al. [9] can be divided into three categories in order to prioritize them:
- Overarching life goals
- Function-related goals
- Disease-related goals
“Top-down” and “bottom-up” approach
Disease-related (e.g. relieving pain) or function-related goals (e.g. improving walking distance, being able to climb stairs) often lead to consultation with a doctor. When agreeing individual therapy goals, it is often beneficial to start with the overarching life goals, as they influence the function- and disease-related goals. This so-called “top-down approach” supports the structure of the conversation.
If those affected find it difficult to formulate overarching life goals, more specific, function-related and illness-related goals can also be worked out together. Building on this, it can then be easier to derive overarching life goals from it. This procedure is known as the “bottom-up approach”.
Prioritization of goals
During the agreement of therapy strategies, the prioritization of goals may change if potential consequences of the therapy (e.g. better metabolic control vs. restrictions due to intensified therapy) or influencing contextual factors (e.g. eating habits in the family) become clear. If there are competing objectives, it may be necessary to weigh them up (Overview 1)!
Participatory decision-making is a continuous process in which, in addition to the patients, various professional groups providing care and, whenever possible and desired, relatives and family members must be involved.
The key to success is to adapt the conversation to the needs and skills of the person concerned, e.g. cognitive abilities, language skills and knowledge, to offer appropriate assistance and comprehensible information or decision-making aids and to ensure that the person has understood the information and can use it for themselves. Education programs for people with diabetes provide an important basis for making informed decisions about their condition.
In addition to knowledge about the disease and the influence of diet and exercise, help with self-management and motivation is also provided.
Regularly evaluate and adjust therapy goals
Therapy goals agreed individually with the patient should be evaluated regularly and as required during the course of treatment and pursued or adjusted according to the results. The physician should document and make available the individual therapy goals and, if applicable, the reasons for not achieving them, in a way that is comprehensible to the patient and the professional groups providing care. This also applies to the evaluation of treatment goal achievement (recommendation 4-4 [1]).
The documentation of therapy goals should ensure that they are not only addressed, but that patients and other professional groups providing care (e.g. pharmacists, physiotherapists, diabetes consultants, nursing staff) can understand them, check them and use them as a guide in the further course of treatment. In the context of this recommendation, the documentation of objectives refers to the recording of overarching objectives as well as the regular recording of the desired results of measurement and laboratory parameters. It is important to provide patients with these goals in a simple written form (e.g. as a printout, note or entry in the diabetes health passport). This also applies if the patient and doctor realize during the course of treatment that goals have changed.
When providing information on the diagnosis and treatment options for type 1 diabetes, the various options and their advantages and disadvantages should be presented comprehensively and in an understandable form (recommendation 4-5, [1]). By regularly reviewing therapy goals, therapy can be adapted to changing needs and contextual factors. As the guideline group also sees great potential for benefit and no evidence of harm with this recommendation and also assumes that there is a supply problem, it makes strong recommendations.
What does risk communication mean?
Appropriate communication of risks contributes to a realistic assessment of options and to decision-making satisfaction. The guideline group therefore considers comprehensible risk communication between practitioners and patients to be a key requirement when weighing up treatment goals and options.
Written, evidence-based information can be used for risk communication. Evidence-based health information can support the joint discussion by presenting diagnosis and treatment options with their advantages and disadvantages in an understandable way.
Further requirements for high-quality evidence-based patient information are formulated in the position paper “Good Practice Health Information” published by the German Network for Evidence-based Medicine (DNEbM) in 2020 [10].
For upcoming health-related decisions regarding type 1 diabetes, the discussion should be conducted according to the concept of participatory decision-making (Fig. 1). In clinical practice, PEF is often, but not necessarily, associated with the use of decision aids. A systematic Cochrane review by Crane et al. [4] suggests that decision aids help patients to make more decisions that are consistent with their personal treatment goals (low quality of evidence, lack of precision, consistency and directness), to be better informed (high quality of evidence) and to assess risk more realistically (moderate quality of evidence) [1].
Possible reflection questions to support the dialog:
- Did I adopt an accepting, appreciative, person-centered and empathetic attitude during the conversation?
- Have I listened to the patient’s concerns and adapted the content of the conversation accordingly?
- Did I address the patient’s wishes, expectations and ideas, but also possible concerns and problems during the consultation?
- Did I ask open questions during the consultation and encourage the patient to ask questions themselves or ask further questions?
- Did I actively encourage the patient’s own initiative during the consultation?
- Have I correctly assessed the patient’s ability to implement their diabetes therapy independently?
- Have I discussed the specific treatment goals – especially milestones – with the patient and reached an agreement with the patient?
- Have I asked the patient, if necessary, what is preventing them from fulfilling the therapy goals and whether or how I can support them in their opinion?
- Have I asked the patient about their previous successes and acknowledged them?
- Have I made a specific agreement with the patient at the end of the consultation or agreed a specific topic of conversation with them for the next appointment?
Criteria: Characteristics of the disease or therapy, physical functions, psychological factors, characteristics of the person, social context factors, context factor medical care.
Conclusion
Participatory decision-making is a continuous process in which, in addition to the patient, various professional care groups and – whenever possible and desired – relatives and family members must be involved. The key to success is to adapt the conversation to the needs and skills of the person concerned (e.g. cognitive abilities, language skills and knowledge), to offer appropriate assistance and comprehensible information or decision-making aids and to ensure that the person has understood the information and can use it for themselves.
In order to support relevant decisions in type 2 diabetes and the self-management of those affected, health information and decision aids are being developed as an integral part of the NDMG Type 2 Diabetes. The composition of a participant-oriented presentation, adapted to given experiences, is of great importance here. The methodical preparation and handling of medical information is therefore important for information processing. The initialization of interaction support is an excellent support for learning processes. The use of media should be sparing and supportive, for example by discussing the CGM data read out.
Education programs for people with type 1 diabetes provide an important foundation for making informed decisions about their condition. In addition to knowledge about the disease and the influence of diet and exercise, help with self-management and motivation is also provided.
Take-Home-Messages
- In order to have a good conversation, it is essential to correctly assess the needs and skills of the person concerned.
- Building on existing experience and providing understandable information improves the self-management of existing type 1 and type 2 diabetes mellitus in equal measure.
- The training programs, which match the therapy, provide the basic knowledge for self-management.
- Participatory decision-making should be understood as a continuous process.
Literature:
- S3 guideline of the German Diabetes Society (DDG): Therapy of type 1 diabetes. AWMF-Registernummer: 057-013_04.09.2023.
- National Care Guideline Type 2 Diabetes. AWMF register number: nvl-001; doi: 10.6101/AZQ/000475.
- Davies MJ, Aroda VR, Collins BS, et al: Management of Hyperglycemia in Type 2 Diabetes, 2022. A Consensus Report by the American Diabetes Association (ADA) and the European Association for the Study of Diabetes (EASD). Diabetes Care 2022; 45(11): 2753-2786; doi: 10.2337/dci22-0034.
- Crane S, Backus L, Stockman B, et al: Understanding Treatment Burden and Quality of Life Impact of Participating in an Early-Phase Pediatric Oncology Clinical Trial: A Pilot Study. J Pediatr Oncol Nurs 2018; 35(1): 25-35; doi: 10.1177/1043454217723863.
- Dobler CC, Harb N, Maguire CA, et al: Treatment burden should be included in clinical practice guidelines. BMJ 2018; 12: 363;
doi: 10.1136/bmj.k4065. - Kirchberger I, Meisinger C: KORA study: Results from 20 years of health research in Augsburg. Public Health Forum 2012; 20(3): 19.e1-19.e3; doi: 10.1016/j.phf.2012.06.010.
- Peyrot M, Rubin RR, Lauritzen T, et al: Psychosocial problems and barriers to improved diabetes management: results of the Cross-National Diabetes Attitudes, Wishes and Needs (DAWN) Study. Diabet Med 2005; 22: 1379-1385; doi: 10.1111/j.1464-5491.2005.01644.x.
- Kulzer B, Lüthgens B, Landgraf R et al: Diabetes-related stress, well-being and attitudes of people with diabetes. Diabetologist 2015; 11; 211-218; doi: 10.1007/s11428-015-1335-8.
- Elwyn G, Durand MA, Song J, et al: A three-talk model for shared decision making: multistage consultation process. BMJ 2017; 359: j4891; doi: 10.1136/bmj.j4891.
- Deutsches Netzwerk Evidenzbasierte Medizin e.V.: Evidence-based health information in “plain language” – is that even possible? 2020; doi: 10.3205/20ebm157.
HAUSARZT PRAXIS 2024; 19(2): 11–15
