Tool for guidelines and shared decision making in practice

1. Introduction

As a result of illnesses, patients are often faced with new situations in which important decisions need to be made regarding prevention, diagnostics, treatment and aftercare. More and more often, patients and their families are given the opportunity to participate in this decision-making process. There may be situations in which there is no single best choice, but where there are different health care options with similar levels of effectiveness, side effects and consequences for the patient. The results of these various options may also be valued differently [1]. In the case of such decisions, the patient’s preference regarding whether or not to consider treatment or a particular type of treatment needs to be taken into account. These decisions are called ‘preference sensitive’ decisions. Preference-sensitive decisions occur mainly in ‘conditional’ recommendations (i.e. weak rather than strong recommendations, according to the GRADE system). The consulting room dialogue with the patient may be more urgent in conditional recommendations because of:

  • lack of evidence
  • availability of more than one valid treatment option (equipoise, dilemma)
  • evidence that different patients may have different preferences and that these preferences may be different than those of the health care providers (e.g. regarding the side effects of treatment, which may outweigh the beneficial effects of treatment for the one but not the other).

In such situations, a joint decision-making process (shared decision making, SDM) between health care provider and patients is highly appropriate. Properly informing patients of the different options and involving them in the decision-making leads to higher patient satisfaction and improved health care outcomes. Caregivers who do not explicitly ask about their patient’s preferences often estimate them poorly.

Decision aids can provide a tool for facilitating the process of SDM. Using decision aids in this process can help combine the different perspectives of the patient and health care provider. On the one hand, the health care must meet the patient’s wishes while on the other it must be embedded in the treatment provided by health care providers and adhere to their standards and guidelines. Actively working on SDM together with the patient requires a change of attitude and approach for many health care providers. In order to achieve this, the topic must become more widely known. This could be done by giving it attention in the education of health professionals, but especially by including it in professional standards and guidelines. Providing links to relevant information and selection aids on the websites of scientific societies and patient associations can also be helpful.

The occurrence of SDM and reasoned choices is likely to increase if the relevance of decisions tools are taken into account throughout the entire guideline process, starting from when the review questions are determined. For instance, if it is discovered during the phase in which the review questions are determined that the patient’s preferences do not match those of the healthcare provider, then the recommendations will need to include decision aids for the shared decision-making process. In addition, shared decision-making will increase when patient associations are involved in the development of both the guideline and the decision aids and are made shared owner of these. Finally, implementing the guideline together with the corresponding decision aids will help to promote shared decision-making.

2. Objective of this tool

This tool aims to promote SDM between health care providers and patients when implementing preference-sensitive guideline recommendations in practice. The recommended methods and strategies described above are not evidence-based but have been developed by exploratory qualitative research and expert opinion. The collected ideas aim to contribute to:

  • a more active participation of health care recipients in the decision-making processes for diagnostics and treatment
  • promoting self-management for clients with a medical condition
  • lowering the decision uncertainties and dilemmas
  • decreasing the number of postponed decisions and
  • increasing the satisfaction of health care recipients and providers in the area of decision-making.

3. Content of the tool

In general, it is advisable to appoint one member of the guideline development group, preferably a patient, to monitor SDM during the development of the guideline with the use of this tool. The development group chair should be familiar with the tool and encourage support for this among the other group members.

The tool will be supported by case studies from practice and will consist of three components:

3.1. Factors to consider

In principle, all health care processes may be preference sensitive, but to what extent this applies will differ for each individual case. For this reason, SDM should ideally always be considered. However, the urgency for SDM may vary depending on the situation and guideline recommendation. There is a continuum between situations that are non-preference sensitive and ones that are highly preference sensitive. Whether a situation is preference sensitive will depend on a number of factors that increase or decrease the level of sensitivity. A number of considerations are listed below that may assist the guideline development group in choosing recommendations for guidelines where SDM is most urgent. The overview below is not exhaustive.

0% preference-sensitive situation 100% preference-sensitive situation
Factors to consider Horizontale pijl
  • The urgency of medical treatment regarding time, acuteness, and emergency care versus care for chronic conditions (the more urgent the treatment, the less preference-sensitive the recommendation).
  • The extent to which there are several, more or less equal, options for medical treatment (prevention, diagnostics, treatment, rehabilitation and aftercare; the more equal the options, the more preference-sensitive the recommendation).
  • The difference between what caregivers think the best option is for the patient and what well-informed patients would decide themselves (the greater the difference, the more preference-sensitive the recommendation).
  • The generalizability of the evidence on which the recommendation is based (the less generalizable the evidence, the more preference-sensitive the recommendation).
  • The extent to which side effects infringe on the quality of life (the greater the side effects, the more preference-sensitive the recommendation).
  • The extent to which outcome measures exist that are important to patients (such as morbidity, quality of life, participation) and in which different valuations can play a role (the greater the potential difference in valuation of health care outcomes, the more preference-sensitive the recommendation).
  • The extent to which diversity issues exist. See also Tool for developing population-specific recommendations en Tool for considering sex differences in guideline development.

3.2. Strategies for SDM in practice

A user’s guide is presented below for ‘guideline development strategies that facilitate interaction and dialogue about the preferences of individual patients when implementing the guideline’. How does a guideline developer facilitate the translation of the guideline recommendation into individual and tailored plans? How can the guideline stimulate effective interaction and dialogue in the consultation room? A number of generic support materials are available for patients that are not linked to a specific recommendation.  Examples include a patient version of the guideline and the basic rights and obligations regarding communication listed in the Medical Treatment Contracts Act (Wet op de geneeskundige behandelingsovereenkomst, WGBO). In addition, there are available strategies that can be linked to specific recommendations. Three of these strategies are elaborated on below.

Strategy 1. Make the health care provider aware of preference-sensitive recommendations and provide aids for discussing alternative options by:

  • highlighting preference-sensitive recommendations so that the guideline user is made aware of the dialogue with the patient
  • describing the alternative and non-intervening options along with all the relevant advantages and disadvantages of these for the patient
  • describing in ‘other considerations’ why a recommendation has been formulated as conditional or weak, especially if, according to GRADE, the recommendation is weakened by variation in patient preferences
  • describing research data about patient preferences and values. There are possibilities to make a search filter from the patient’s perspective to help determine the desirability of entering a SDM process with the patient. This is comparable to previously designed filters
  • describing research on health care provider prejudices, especially when these appear to differ from the decisions that patients actually make
  • providing examples that emphasise the importance of including patient preferences
  • allowing time for reflection and consideration.

Strategy 2. Develop support materials for patients that are linked to specific preference-sensitive recommendations. An example of these could be:

  • a complete decision aid, which is the best option for high preference-sensitive recommendations;
  • a fact sheet with comprehensible information about alternative options and non-intervention options, including all the relevant advantages and disadvantages of these options for the patient;
  • risk communication tools for (preference-sensitive) recommendations in the guideline;
  • tools that can help elicit patient values for (preference-sensitive) guideline recommendations;
  • complete decision aids;
  • same wording and language in all products for implementing the guidelines (e.g. summary, patient version of the guideline, decision aids) whether they are primarily intended for the health care provider or the patient;
  • decision aids for SDM in the electronic patient record (EPR) and other electronic systems for patients.

Strategy 3. Regard communication and information as an effective intervention (‘information therapy’) and link those to specific preference-sensitive recommendations, for example by:

  • formulating recommendations at the SDM level;
  • describing in the recommendation who is responsible for and when to share what with the patient and his or her family and when to use a decision aids;
  • describing who is responsible for giving the patient (a copy of) their personal treatment plan and when this should be done;
  • describing who is responsible for asking the patient to involve a companion in the process such as partner, son/daughter, friend and when this should be done;
  • offering a list of useful questions for patients in the patient version of the guideline;
  • building and offering a step-by-step communication plan that takes important subgroups and differences into account, for example:
    • age, sex, personal and family history, e.g. comorbidity
    • psychological and social aspects such as level of intelligence, education, socioeconomic status, environment, culture and religion
    • context of the health care system e.g. reimbursements.
  •  allowing time for reflection and consideration.

3.3. SDM platform

There is only one available manual for developing decision tools. Besides this manual, there are no further aids or tools for focusing attention on the relevance and development of decision aids during the guideline development process (‘step-by-step’ approach). However, there is the National Platform for Shared Decision Making that includes the NPCF, the NHG, the Trimbos Institute, the CBO, RIVM, TNO and researchers who, over the past years, have collaborated in developing digital decision aids commissioned by ZonMw. All available decision aids have been made available in the Netherlands and abroad through the health care portal Finally, it is advisable to become familiar with the blueprint for patient participation in guideline development in order to promote SDM.

4. Literature

  1. O’Connor AM, Bennett CL, Stacey D, Barry M, Col NF, Eden KB, Entwistle VA, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner D. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2009, Issue 3. Art. No.: CD001431. DOI: 10.1002/14651858.CD001431.pub2. Link
  2. Wensing M, Baker R. Patient involvement in general practice care: a pragmatic framework. Eur J Clin Pract 2003;9:62-5.
  3. Molenaar S, Sprangers MAG, Rutgers EJTh, Luiten EJT, Mulder J, Bossuyt PMM, Van Everdingen JJE, Oosterveld P, De Haes CCJM. Decision support for patients with early-stage breast cancer: effects of an interactive breast cancer CDROM on treatment decision, satisfaction, and quality of life. J Clin Oncol 2001;19:1676-87.
  4. Molenaar S, Sprangers M, Oort F, Rutgers E, Luiten E, Mulder J, van Meeteren M, de Haes H. Exploring the black box of a decision aid: what information do patients select from an interactive Cd-Rom on treatment options in breast cancer? Patient Educ Couns 2007;65:122-30.
  5. Haywood K, Marshall S, Fitzpatrick R. Patient participation in the consultation process: A structured review of intervention strategies. Patient Educ Couns 2006;63:12-23.
  6. Barrat A, Trevena L, Davey HM, McCaffery K. Use of decision aids to support informed choices about screening. Brit Med J 2004;329:507-10.
  7. Wensing M, Grol R. Patients’ views on health care. A driving force for improvement in disease management. Dis Manag Outcomes 2000;7:117-25.
  8. O’Connor AM, Jacobsen MJ, Stacey D. An evidence-based approach to managing women’s decisional conflict. J Obstet Gynecol Neonatal Nurs 2002;31:570-81.
  9. Adams RJ, Smith BJ, Ruffin RE. Impact of the physician's participatory style in asthma outcomes and patient satisfaction. Ann Allergy Asthma Immunol 2001;86:263-71.
  10. Daltroy LH, Morlino CI, Eaton HM, Poss R, Liang MH. Preoperative education for total hip and knee replacement patients. Arthritis Care Res 1998;11:469-78.
  11. Van Tol-Geerdink JJ, Stalmeier PFM, van Lin ENJT, Schimmel EC, Huizenga H, van Daal WAJ, Leer JW. Do patients with localized prostate cancer treatment really want more aggressive treatment? J Clin Oncol 2006;28:4581-86.