Submitted by Marleen Kunneman
Involving patients in a shared decision making (SDM) process is increasingly the preferred approach to making healthcare decisions when more than one reasonable option is available, as is often the case in (neo-)adjuvant cancer treatment. In our recent studies, we aimed to gain insight in the extent to which the three key steps of SDM are followed during clinical encounters on (neo-)adjuvant cancer treatment. Our results showed that the steps of SDM are only followed to a limited extent. Below, we will describe our findings in more detail.
The first step in SDM is to create choice awareness, that is, to acknowledge that there is more than one sensible option available and that a decision needs to be made. We found that oncologists consistently omit the option of forgoing (neo-)adjuvant treatment during clinical encounters, and instead, focus on the one treatment strategy they recommend.1 In only 3 of the 100 encounters analysed, the oncologist indicated that a treatment decision still needed to be made. By that, oncologists miss a crucial opportunity to engage patients and facilitate SDM.
The second step in SDM is to discuss the possible treatment options in more detail. We showed that there is considerable variation between as well as within oncologists in information provision, both in the number and the type of benefits and harms that they addressed.2 The variation could not be explained by patient characteristics. This lack of clarity on which benefits and harms should be discussed during the clinical encounter hampers the process of SDM. For preoperative radiotherapy in rectal cancer, we were able to reach consensus among radiation oncologists and patients on a core list of topics that should always be addressed in the pre-treatment consultation.3 Of note, all items in this core list are long-term benefits and harms of treatment. We assessed congruence between the core list and routine clinical care, and found that patients receive information on fewer than half of the topics from the core list.3 In almost one in ten patients, none of the harms from the core list were addressed. This framing bias toward the beneficial effect of treatment was also found in another study on communication of probabilities.4 Oncologists virtually always mention probabilities of the beneficial effect of treatment, but probabilities of harms often go unmentioned. After the consultation, patients tended to overestimate the beneficial effect of treatment, and to underestimate the probability of harms. This suggests that many patients are overly optimistic and believe that there is no harm in undergoing (neo-)adjuvant treatment.
In the third step of SDM, the patient’s views and preferences should be discussed and considered. We found that less than half of the patients voice their values during the consultation, and only one in five patients voices a treatment preference.5 If patients’ values or treatment preferences had been addressed or if the oncologist had indicated that these were of importance when deciding about treatment, the patient felt that he or she was significantly more involved in the treatment decision-making process.
Our results show that in routine clinical care opportunities are missed to engage patients in a process of SDM. Small changes in doctor-patient communication during clinical encounters can facilitate patients’ involvement in deciding about treatment.
Marleen Kunneman conducted her PhD research at the Leiden University Medical Center, under supervision of Prof. Anne Stiggelbout, Prof. Corrie Marijnen and Arwen Pieterse and is now a postdoctoral researcher at the Academic Medical Center, University of Amsterdam, the Netherlands. Her research is focused on doctor-patient communication during clinical encounters and shared decision making. Marleen has a Research Collaborator appointment at the Mayo Clinic, where she works with Prof. Victor Montori on assessing the impact of creating choice awareness as a prerequisite for more active patient involvement in clinical encounters.
- Kunneman M, Engelhardt EG, ten Hove FL, et al. Deciding about (neo-)adjuvant rectal and breast cancer treatment: Missed opportunities for shared decision making. Acta Oncol 2015;(epub ahead of print).
- Kunneman M, Marijnen CAM, Rozema T, et al. Decision consultations on preoperative radiotherapy for rectal cancer: Large variation in benefits and harms that are addressed. Br J Cancer. 2015;112:39-43.
- Kunneman M, Pieterse AH, Stiggelbout AM, Marijnen CAM. Which benefits and harms of preoperative radiotherapy should be addressed? A Delphi consensus study among rectal cancer patients and radiation oncologists. Radiother Oncol 2015;114:212-217.
- Kunneman M, Stiggelbout AM, Marijnen CAM, Pieterse AH. Probabilities of benefit and harms of preoperative radiotherapy for rectal cancer: What do radiation oncologists tell and what do patients understand? Patient Educ Couns. 2015;98:1092-1098.
- Kunneman M, Marijnen CA, Baas-Thijssen MC, et al. Considering patient values and treatment preferences enhances patient involvement in rectal cancer treatment decision making. Radiother Oncol 2015;(epub ahead of print).