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Using interventions with patients before clinical encounters to encourage their participation

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Shared Decision Making in Health Care: Achieving evidence-based patient choice Glyn Elwyn, Adrian Edwards, and Rachel Thompson

Print publication date: 2016 Print ISBN-13: 9780198723448 Published to Oxford Scholarship Online: September 2016 DOI: 10.1093/acprof:oso/9780198723448.001.0001

Using interventions with patients before clinical encounters to encourage their participation A systematic review

Marjan Faber Sandra van Dulmen Paul Kinnersley

DOI:10.1093/acprof:oso/9780198723448.003.0025

Abstract and Keywords Patients often do not get all the information they want or need during the clinical encounter. Interventions directly targeting patients can support patients to gather the information that they value. A systematic review of the literature, supplemented with a meta-analysis, revealed 51 randomized clinical trials. The most common interventions were question prompt lists and coaching sessions, usually delivered immediately before the consultation. Only a minority of the individual studies reported positive effects, though the meta-analysis showed small significant effects on the number of questions asked, patient participation, and patient satisfaction. No effects were found on patients’ anxiety, knowledge, and length of the consultation. Interventions designed to help patients to address their information needs during their clinical visit generate small benefits for patients. There remains uncertainty about the adequate timing of the intervention, as well as the impact of additional training for physicians.

Keywords:   Patient information, doctor-patient communication, information needs, clinical encounter, question prompt sheets, patient coaching

Using interventions with patients before clinical encounters to encourage their participation

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Introduction to interventions with patients before clinical encounters After clinical encounters patients often report that they feel uninformed, not only because they receive too little information, but also because the information provided does not address their specific information needs or may be difficult to understand. Failure to give patients the information they need may increase emotional distress and hamper any further benefits from active patient involvement in the encounter and care processes such as symptom relief or treatment adherence (Street, 2013).

Three categories of reasons are known to limit the amount and quality of information transfer during the encounter. First, factors related to the physician: for example, doctors ignore or misinterpret patients’ information needs, lack the skills to communicate effectively, overestimate the amount of information they have provided, and use technical and non-specific terminology. Second, the mode of information transfer can hamper effectiveness, such as spoken versus written versus pictograms. Third, factors related to patients need to be considered, including health, literacy skills, and anxiety levels. Moreover, patients refrain from asking questions as they may feel they are being ‘difficult’ when asking too much, perceive that there is no time for questions, and only remember their questions after leaving the room (Frosch et al., 2012; Henselmans et al., 2015; van Bruinessen et al., 2013).

Patients themselves can be a very powerful source for change: they can monitor their health problems and needs for care, document the information they require, and report this during their contact with the care provider. Such strategies may help to identify issues that could otherwise go unnoticed or unmentioned. This chapter summarizes what clinicians need to know about pre- encounter tools that are available outside the clinical office for patients to help them get the information they require during the encounter.

(p.161) What pre-encounter tools are considered? Pre-encounter tools targeting patients cover a wide range of approaches. These include methods and tools that (1) provide information and (2) those that provide information, combined with activation triggers, prompting question asking behaviour. This chapter covers only those interventions that are delivered ahead of the encounter.

A systematic review of effectiveness This chapter summarizes 51 studies which were identified building on the review by Kinnersley et al. (2007) examining the effects of pre-encounter interventions that encourage patients to:

◆ Consider their information needs and identify and ask questions

◆ Consider the amount and content of information they need

◆ Consider how to express their information needs

Using interventions with patients before clinical encounters to encourage their participation

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◆ Consider how they might overcome barriers to communication within the encounter

◆ And/or check their understanding of information provided in the previous encounter

As we were primarily interested in the impact on patients’ question-asking behaviour and patient participation during the encounter, these were our primary outcomes. Relevant secondary outcomes include the impact on encounter outcomes (i.e. anxiety immediately after the encounter, patient satisfaction, and knowledge) and services outcomes (e.g. encounter length).

Characteristics of the studies We reviewed the 51 studies and extracted the main descriptive information in order to produce summary statistics. A total of 11,350 patients were randomized. The number of patients varied largely, with three studies involving fewer than 50 patients and 16 studies including over 200 patients. Likewise the number of clinicians varied, with 12 studies involving fewer than five clinicians, six studies with 5–10 clinicians, and 19 studies with more than 10 clinicians. Most of the studies were performed in primary care/family medicine (n = 16) and oncology (n = 14). In most cases, the intervention was meant to prepare patients for their appointment with a physician (n = 41), in eight studies patients consulted either physicians or nurses, and in the remaining two studies patients met with family planning care providers (n = 1) or genetic counsellors (n = 1). For the primary outcome measures audio or videotapes were most often used to assess the number of questions asked (22/26 studies), while for assessing the level of patient participation both audio or videotapes (13/23 studies) and questionnaires (9/32 studies) were frequently used.

Characteristics of the interventions Most studies evaluated a single intervention, compared to usual care, consisting of:

◆ Written material, primarily question prompt sheets, which patients could use to note questions that they would like to ask during the encounter. These sheets were either (p.162) open, or contained pre-defined lists of questions from which patients could choose the ones most relevant for them (25 studies).

◆ Brief session with a health care professional preceding a contact with a physician, in which the patient was helped to recognize relevant healthcare problems and decisions related to these problems. The patient was encouraged to identify the questions they wanted to ask and to discuss these with the physician (four studies).

◆ Audiotape of the previous encounter (one study).

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Ten studies combined two or three of these strategies. The remaining 11 studies compared two single intervention strategies. In 33 of the 51 studies, the intervention was delivered to the patient in the waiting room, immediately before their encounter, whereas in 18 studies the intervention was delivered some time before the encounter, for example by post (nine studies). In a minority of the studies (eight out of 51), the physicians involved also received an intervention, for example, training on how to use a question prompt sheet, if a patient brought it to the encounter.

What’s the impact of pre-encounter interventions? Figure 25.1 summarizes the effectiveness of the interventions.

Primary outcomes The encounter process improves

Patients using a pre-encounter tool ask more questions and become more actively engaged during their clinic visit. In 42% of the studies, the number of questions significantly increased. This positive finding is confirmed in the meta- analysis of 18 studies with adequate data (standardized mean difference, SMD = 0.31 [95% confidence interval, CI, 0.23 to 0.39]). A similar pattern emerges from those studies including patient participation as an outcome measure: in 57% of the studies this outcome significantly increased, with a SMD of 0.18 (95% CI 0.09 to 0.26) based on ten studies.

Secondary outcomes The outcome of the encounter remains the same, except for patient satisfaction

Pre-encounter tools do not consistently affect patients’ knowledge or their level of anxiety. For both measures, reported in a subset of the studies, both positive and negative effects were found. Patient satisfaction was not affected by the intervention in most studies (20/29). However, the meta-analysis, based on 21 studies, showed a marginal positive impact on patient satisfaction (SMD = 0.09 [95% CI = 0.02 to 0.15]).

Service outcomes show inconsistent results

Clinicians’ satisfaction, only assessed in seven studies, increased in one study, and remained unchanged in the other six. The meta-analysis with five studies, showed a small statistically non-significant change (SMD = -0.09 [95% CI -0.85 to 0.67]). Encounter (p.163) length was an outcome measure in 23 studies, of which four showed a significant increase in length due to the intervention and one a significant decrease. The average encounter length did not significantly change (SMD = 0.77 [95% CI = −0.08 to 1.61], n = 17 studies).

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The numbers within parentheses indicate the number of studies reporting this outcome measure. The labels to indicate effectiveness reflect statistical significance; * = positive effect is confirmed in the meta- analysis; a = positive effect means increase; b = positive effect means decrease.

Fig. 25.1 Effectiveness of pre-encounter interventions for helping patients address their information needs.

Source: data from Frosch DL, May SG, Rendle KA, Tietbohl C, and Elwyn G. Authoritarian physicians and patients’ fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Affairs (Millwood), Volume 31, Issue 5, pp. 1030–1038, Copyright © 2012 Project HOPE; Street RL, Jr. How clinician-patient communication contributes to health improvement: modeling pathways from talk to outcome. Patient Education Counseling, Volume 92, Issue 3, pp. 286–291 Copyright © 2013 Elsevier B.V.; Henselmans I, Heijmans M, Rademakers J, and van Dulmen S. Participation of chronic patients in medical consultations: patients’ perceived efficacy, barriers and interest in support. Health Expectations, Volume 18, Issue 6,

Planned subgroup analyses showed that while written materials and coaching were equally effective on question asking behaviour, coaching led to a greater increase in patient satisfaction, without an increase in encounter length. Training for the clinician, in addition to the patient-directed intervention, did not appear to have additional benefits, although the number of studies is limited.

Using interventions with patients before clinical encounters to encourage their participation

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pp. 2375–2388, Copyright © 2015 John Wiley and Sons, Ltd.

What we know now and don’t know yet Despite a large number of broadly similar trials, the evidence for a positive impact of pre-encounter interventions targeting patients in addressing their information needs is limited. Though a number of outcome measures improve significantly, the effects are small, outcome measures capturing similar constructs vary highly, and the quality of the studies is poor, for example, due to a lack of blinding of personnel and patients. Such methodological constraints make it difficult to draw definite conclusions.

(p.164) A simple intervention, like a question prompt sheet, does not seem to change the complex communication process between patients and physicians very much. More questions do not result in better information exchange, more satisfaction, and less anxiety. Trials that included clinician training in addition to an intervention targeting the patient (n = 8) were largely ineffective. The failure to find consistent evidence of other benefits apart from increased question asking remains puzzling. This could be due to the trial designs used or alternatively it suggests that the assumption of a clear connection between question asking and the other outcomes of interest is overly simplistic. It could be the case that the clinicians prepared to take part in these studies already had good communication skills and addressed patient needs through other methods.

The lack of effectiveness might also be due to the fact that certain patient groups may find the intervention more helpful than others. In only two studies was the same intervention applied in different patient groups (Cegala et al., 2000; McCann and Weinman, 1996). They found that younger, white, middle- class, and higher educated patients asked more questions. This leaves important questions unanswered, such as do disease characteristics and encounter type matter? For example, the intervention might be more appropriate if there is a decision to be made or if the encounter is part of a long-standing chronic care management programme.

Conclusions This review presents the impact of pre-encounter tools on question asking behaviour, as a method to address unmet information needs. Interventions targeting patients are a promising start as they are easy to implement and effective in raising the number of questions asked, leaving the average encounter time unaffected.

Asking questions typically is not a goal in itself, but is seen as contributing to the quality of communication in the medical encounter, alongside fostering the relationship (Bensing et al., 2013). Physicians should therefore be prepared for patients to list questions that are relevant for them and bring them to the

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Access brought to you by:

encounter. If these questions are not addressed properly, there is no benefit and even harms may occur in terms of confusion, frustration, and anxiety in patients.

Further reading ◆ Questions are the Answer (http://www.ahrq.gov/questions)

◆ Speak Up (http://www.jointcommission.org/speakup.aspx)

◆ Ask 3 Questions (http://www.nationalvoices.org.uk/ask-3-questions; www.askshareknow.com.au)

References

Bibliography references:

Bensing, J., Rimondini, M., Visser, A. 2013. What patients want. Patient Education and Counseling, 90: 287–90.

(p.165) Cegala, D.J., McClure, L., Marinelli, T.M., Post, D.M. 2000. The effects of communication skills training on patients’ participation during medical interviews. Patient Education and Counseling, 41: 209–22.

Frosch, D.L., May, S.G., Rendle, K.A., Tietbohl, C., Elwyn, G. 2012. Authoritarian physicians and patients’ fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Affairs (Millwood), 31: 1030–8.

Henselmans, I., Heijmans, M., Rademakers, J., van Dulmen, S. 2015. Participation of chronic patients in medical consultations: patients’ perceived efficacy, barriers and interest in support. Health Expectations, 8: 2375–88.

Kinnersley, P., Edwards, A., Hood, K., et al. 2007. Interventions before consultations for helping patients address their information needs. Cochrane Database Systematic Review, 3), pp CD004565.

McCann, S., Weinman, J. 1996. Empowering the patient in the consultation: a pilot study. Patient Education and Counseling, 27: 227–34.

Street, R.L., Jr. 2013. How clinician-patient communication contributes to health improvement: modeling pathways from talk to outcome. Patient Education and Counseling 92: 286–91.

van Bruinessen, I. R., van Weel-Baumgarten, E. M., Gouw, H., Zijlstra, J. M., Albada, A., van Dulmen, S. 2013. Barriers and facilitators to effective communication experienced by patients with malignant lymphoma at all stages after diagnosis. Psychooncology, 22: 2807–14. (p.166)