The impact of patient narratives on medical students’ perceptions of shared decision making: A randomized controlled trial

ABSTRACT

Successful shared decision making (SDM) in clinical practice requires that future clinicians learn to appreciate the value of patient participation as early as they can in their medical training. Narratives, such as patient testimonials, have been successfully used to support patients’ decision-making process. Previous research suggests that narratives may also be used for increasing clinicians’ empathy and responsiveness in medical consultations. However, so far, no studies have investigated the benefits of narratives for conveying the relevance of SDM to medical students. In this randomized controlled experiment, N = 167 medical students were put into a scenario where they prepared for medical consultation with a patient having Parkinson disease. After receiving general information, participants read either a narrative testimonial of a Parkinson patient or a fact-based information text. We measured their perceptions of SDM, their control preferences (i.e., their priorities as to who should make the decision), and the time they intended to spend for the consultation. Participants in the narrative patient testimonial condition referred more strongly to the patient as the one who should make decisions than participants who read the information text. Participants who read the patient narrative also considered SDM in situations with several equivalent treatment options to be more important than participants in the information text condition. There were no group differences regarding their control preferences. Participants who read the patient testimonial indicated that they would schedule more time for the consultation. These findings show that narratives can potentially be useful for imparting the relevance of SDM and patient-centered values to medical students. We discuss possible causes of this effect and implications for training and future research.

Trial registration: The study was pre-registered on the pre-registration platform AsPredicted (aspredicted.org) before data collection began (registration number: #29,342). Date of registration: 17 October 2019.

KEYWORDS:

• Interprofessional collaboration
• medical students
• physiotherapy
• learning
• attitude

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Acknowledgements

None.

Authors’ contributions

MB, ME, SK, and JK contributed to the conception and design of this study. MB, ME, and SK made substantial contributions to the acquisition of data and performed the statistical analysis. MB, ME, and JK were responsible for drafting the article. SK contributed to its critical revision. All authors approved the final manuscript for publication. All authors have agreed both to be personally accountable for the author’s own contributions and to ensure that questions related to the accuracy or integrity of any part of the work, even ones in which the author was not personally involved, are appropriately investigated, resolved, and the resolution documented in the literature.

Declarations

Ethics approval and consent to participate

This research was performed in accordance with the Declaration of Helsinki. The study had full approval by the ethics committee of the Leibniz-Institut für Wissensmedien (approval number: LEK 2019/037). All participants took part voluntarily and anonymously. They gave written informed consent and were informed about privacy protection, their right to terminate participation at any time without any disadvantage, and about the general purpose of the study.

Consent for publication

Not applicable.

Availability of data and material

Data are available on request to Martina Bientzle.

Competing interests

The authors declare that they have no competing interests.

Disclosure statement

No potential conflict of interest was reported by the authors.

Narrative patient testimonial

When I was first diagnosed with Parkinson’s disease, I was naturally shocked. I knew that there was no cure for Parkinson’s and that later on the whole body would be affected. The idea scared me very much, especially because my grandfather was also suffering from Parkinson’s and I could remember how badly he often felt. The doctor encouraged me and explained to me that the treatment options for Parkinson’s patients had improved significantly over the last decades and that I should not compare my situation with my grandfather’s.

Over time, I have learned to deal with the disease and realized that I can do a lot. I go to a self-help group and the exchange with the others does me a lot of good. I also go to physiotherapy, which is also good for me because I realize that I can still do something physically despite the illness. Fortunately, I get a lot of support from my friends and acquaintances, so that I can deal with the illness openly.

Nevertheless, it is difficult to deal with the disease. When my symptoms are stronger, especially the tremor, I often don’t feel like going anywhere. I am afraid to isolate myself further and further, although I have always been a sociable person. I know that many patients with Parkinson’s disease feel similar. Although I have actually had some experience with the disease, I am still afraid that I am no longer in complete control of my body.

I was first treated with a very low-dose medication. It helped very well against my symptoms, but it caused me problems sleeping. I was often tired and in a bad mood during the day. When I dared to talk to my doctor about this, he tried to adjust the treatment to my individual needs and prescribed a different medication. He encouraged me to bring in my experience with the medication and my wishes regarding the treatment.

Because I know that the disease is getting worse and worse, I have also thought about other treatment options. I have heard that deep brain stimulation works well for many patients. Most of them do it when there is no other way, but I have read that it is also a possibility at an earlier stage of the disease - as it is for me. That’s why I would like to talk to my doctor about how this looks like in my case.

I am very unsure whether such a surgery would be the right thing for me. The thought of having my head drilled and something put into my brain is pretty scary and I also have the worry that I won’t really be myself after that, because sometimes there are changes in feelings or personality. Supposedly such changes are reversible, but it is still not a pleasant thought. I’m also afraid of complications - this only happens to a few patients, but what if I were one of them? On the other hand, I am aware that my disease will get worse over time and that at some point I may have no choice but to do deep brain stimulation. I already realize that the dosage of the medication has to be increased again and again and that I still notice some symptoms clearly. I know that the effect of the drugs may diminish, so that I may soon have to take additional, stronger drugs. With deep brain stimulation, the dosage could be reduced again for the time being. However, I have heard that deep brain stimulation can also have a habituation effect, whereupon the intensity of the stimulation must be increased.

I would like to have more motivation to go to events or do real sports. In the past I did a lot of sports and was very active, but due to the illness this has already decreased considerably. It is important to me that I can still lead a normal and independent life as long as possible and I would like the best possible treatment for this.

Fact-based information text

Parkinson’s disease or Morbus Parkinson (further synonyms: Idiopathic Parkinson’s syndrome, colloquially also called shaking disease) is a slowly progressive loss of nerve cells. As an incurable neurodegenerative disease, it is one of the degenerative diseases of the extrapyramidal motor system. Approximately one percent of the world’s population over the age of 60 is affected by this disease. Parkinson’s disease is thus the second most common neurodegenerative disease in the world.

Typical symptoms are muscle tremor, muscle rigidity, slowed movements that can lead to immobility, postural instability and ‘out-of-round’ movements when running. In addition, sleep disorders, digestive problems, disorders of the sense of smell and mood swings often occur.

The disease begins insidiously and then progresses throughout the patient’s life, the symptoms become stronger in the course of the disease and are therefore easier to recognize. An early sign is, for example, the reduced and later missing swinging of an arm while walking. It is not uncommon for shoulder pain and one-sided muscle tension to occur, which first leads the patient to an orthopedic specialist.

Today, there is still no possibility of a causal treatment of Parkinson’s syndrome, which would consist in preventing or at least halting the progressive degeneration of the nerve cells of the nigrostriatal system. Therefore, treatment of the symptoms must be satisfied with a treatment that is increasingly feasible, allowing patients to live an almost unhindered life, at least in the first years (sometimes even decades) of the disease.

Treatment is mainly through the administration of a dopaminergic medication, i.e., drugs that increase the supply of dopamine in the brain or drugs that replace the missing dopamine. The most important drug is L-dopa (levodopa), a precursor of dopamine.

Due to the drugs, the symptoms decrease significantly, especially in the early stages of the disease. As the disease progresses, treatment becomes more difficult. In addition, sometimes stressful side effects can occur (e.g., sleep disorders). It is difficult to predict how successful the treatment will be. The drugs do not work in the same way for every person - and sometimes it takes time to find the right dose. A noticeable effect usually sets in within one to two weeks after the start of treatment: Movements become easier again and stiffness decreases. Such problems can be further reduced up to three months after the start of treatment. The tremor is often more difficult to treat. Sometimes it only disappears after months or even years of drug treatment.

For many years, neurosurgical treatment options have also been used for Parkinson’s disease. One method used since the early 1990s is deep brain stimulation (DBS), in which a programmable pulse generator is applied to the patient. It generates electrical impulses and conducts them via thin cables, depending on the localization of the cause of the disease and the corresponding placement of the stimulation electrodes, into the respective basal ganglia subthalamic nucleus, globus pallidus, or the anterior thalamus, whereby overactive false impulses can be effectively suppressed there.

The electrode placement procedure is a stereotactic brain operation that takes about six to twelve hours and requires precise planning and control based on radiologically acquired spatial image data and electrically derived neurophysiological measurements both before and during the operation.

The effect of the surgery is long lasting. However, Parkinson’s disease also progresses with stimulation, so this treatment is not a cure.

DBS is usually only considered in Parkinson’s patients after they have been ill for many years and no further improvement can be achieved with medication. However, studies suggest that it may be useful to operate on patients in earlier stages. Figure 1 - Flow diagram of study design

Additional information

Funding

The research reported here was supported by a grant from the Leibniz ScienceCampus Tuebingen awarded to JK. The authors also acknowledge support by Deutsche Forschungsgemeinschaft and Open Access Publishing Fund of Tuebingen University. None of these funding bodies has exerted any influence on the design of the study and collection, analysis, interpretation of data and on writing the manuscript.