Shared-decision making in cancer

By Khalid Benkhadra, M.D.

Recently, many studies have investigated the role patients want to play in the decision making process around how to manage their health.  This is of great importance, because while clinicians are experts in what works for a certain condition, patients are experts at what works for them. Shared decision making (SDM) is a mode of decision making where the expertise of both clinicians are respected and integrated into decision making through a process of collaborative deliberation..  Prior studies examining the role patients prefer when deciding on cancer treatment found that patients prefer to play a role in decisions, but that role varied from patient to patient1-3. To determine whether or not patient’s preference for SDM modified quality of care or physician communication Kehl et al4 conducted a survey. This survey was conducted among participants in the cancer care outcomes research and surveillance consortium (CanCORS).  Patients in this consortium were questioned about what their preferred role was when making cancer related treatment decisions and what actual role did they have in the decision making process around treatment for their cancer. They also reported on their perception of their overall quality of care.

Two thirds (67.8%) of patients reported that the overall quality of care they received was excellent and over half (55.8%) rated their physician’s communication highly. When they examined how these ratings correlated with the roles patients would prefer to play in the decision making process, they found that compared to patients who preferred share decisions patients who preferred that their physician control the decision making  were less likely to give top ratings to their physician. These patients also gave lower ratings of physician communication. The reasons behind these results are not clear and need further investigation.

Percentage of patients reporting excellent quality of care and high communication were both poorly calculated. For quality of care, results were reported by decisions; individual patient rating was not reported. For rating communication, analysis was restricted to patients who answered 3 out of 5 questions and answers were averaged.

In general, outcomes were very subjective and it was difficult to assess how strong the relationship between the patients answers and the actual encounter; there is a possibility a patient might rank an encounter low if he is not happy about a reason not related to the actual encounter. Besides, no information was reported about how educated tha patients were about SDM (and if yes, how much they were). Having a third party watching the encounter and assessing the communication would be a good addition as we can compare it with the patients response and see if both match (rather than taking only the patient’s response)

These findings in general suggest that providing information to patients with cancer and engaging them in decision making is valuable, even for patients who express a preference for a physician controlled decision making process.


  1. Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. Sep 1992;45(9):941-950.
  2. Keating NL, Guadagnoli E, Landrum MB, Borbas C, Weeks JC. Treatment decision making in early-stage breast cancer: should surgeons match patients’ desired level of involvement? J Clin Oncol. Mar 15 2002;20(6):1473-1479.
  3. Hawley ST, Lantz PM, Janz NK, et al. Factors associated with patient involvement in surgical treatment decision making for breast cancer. Patient Educ Couns. Mar 2007;65(3):387-395.
  4. Kehl KL, Landrum M, Arora NK, et al. Association of actual and preferred decision roles with patient-reported quality of care: Shared decision making in cancer care. JAMA Oncology. 2015;1(1):50-58.

Shared decision making in adjuvant cancer treatment

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.


  1. 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).
  2. 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.
  3. 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.
  4. 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.
  5. 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).

Patient explicit consideration of tradeoffs: a Values Clarification Method

Submitted by Arwen H. Pieterse

In oncology, as in other healthcare settings, shared decision making (SDM) is increasingly advocated when more than one treatment strategy is available. However, we previously found that cancer patient treatment preferences are often left undiscussed, and that patients are hardly involved in treatment decision making.  If patients are unclear about their preferences, or if these preferences are left unspoken, patients may not receive the treatment that fits them best.

Values clarification methods (VCMs) have been developed to support patients in weighing treatment benefits and harms and harms and to help them voice what matters most to them We developed a stand-alone VCM that asks patients to make explicit trade-offs between treatment benefits and harms. This VCM is adaptive, in that it ensures that the trade-offs presented to patients are tailored to the preferences of the patient as revealed in the exercise so far.

We tested this VCM in patients newly-diagnosed with rectal cancer who were facing the decision whether or not to undergo short-course pre-operative radiotherapy. Radiotherapy increases the likelihood that the cancer will stay away at the initial site (i.e., local control), however, it also increases the likelihood of fecal incontinence and of sexual dysfunction. We hypothesized that the VCM would aid patients to become more confident on their preferences and to voice them more often during consultations, based on results among treated rectal cancer patients asked to consider the decision hypothetically. We expected that going through the VCM would lead to patients’ preferences to be more often integrated in treatment decisions, and that patients would experience less regret over the decision and would cope better with treatment harms.

Values clarification method

The online VCM was offered in advance of the first encounter of the patient with the radiation oncologist, a visit in which the treatment decision is usually made. The VCM started with lay explanations of the three outcomes (local control, fecal incontinence, and male or female sexual dysfunction), and stated that survival was the same across situations. It then asked patients to rate how important they considered differences between best and worst probabilities of outcomes, that varied within a clinically realistic range (see print screens). Next, the VCM asked patients to indicate their preference for pairs of outcomes, where outcome probabilities differed in each pair. The final page of the VCM showed the patient’s relative importance for the three outcomes in percentages. It did not show which treatment should suit the patient best, as it was meant to support patients in considering the options and they still were to meet with their radiation oncologist.

Patients were initially randomized to be offered the VCM or not. Later on in the study, we offered the VCM to all patients due to practical difficulties and low recruitment rates. We compared the outcomes in patients who agreed to receive the link to the VCM versus those who did not receive the link.


Of the 135 patients who had their consultation audiotaped and completed questionnaires, 35 received and accessed the VCM-link. Patients in the VCM-group slightly more often expressed their views on treatment and treatment outcomes than the patients who had not, although such utterances were still uncommon. This points to very limited discussion between patients and clinicians on how patients consider benefit-harm trade-offs. This may further explain why the questionnaire data showed that patients in the VCM-group did not differ in how clear their values were.

An important finding is that patients who completed the VCM felt less regret over the treatment decision at follow-up, and experienced less impact of faecal incontinence and sexual dysfunction six months after treatment. As hypothesized, explicitly considering trade-offs may have helped patients to better understand the pros and cons involved, and supported them to live with the consequences later on. Of note, the radiation oncologists in this study reported that almost all decisions had been made before the consultation, either by the referring physician or by the tumour board, without input from the patient. Patients clearly lacked room to contribute.


This is the first study to assess the effect of an adaptive conjoint analysis-based VCM on actual patient-clinician communication, and long-term decision regret and impact of treatment harms. Decisions to undergo short-course preoperative radiotherapy in rectal cancer had in almost all cases been made prior to the consultation, without patient input. The VCM hardly could affect final decisions in this setting. Even so, our results suggest a favourable effect of being explicitly invited to think about benefits and harms of treatment on the extent to which patients endorse treatment decisions and can live with treatment consequences.

The full paper was published in Acta Oncologica and can be found here (open access).

This study was made possible by a grant from the Dutch Cancer Society (UL2009-4431).

Arwen H. Pieterse is associate professor in medical decision making at the Leiden University Medical Center, the Netherlands. She studied Cognitive Psychology and graduated (cum laude) in 1998. She obtained her PhD in 2005. She was Research fellow of the Dutch Cancer Society (2008-2011). She published well over 50 international peer-reviewed articles on patient-physician communication, patient and physician treatment preferences, patient-physician (shared) decision making, and psychometric properties of measurement instruments. Based on her research, she co-developed e-learnings to teach shared decision making skills to medical students and clinicians. She received the 2018 Jozien Bensing award from the International Association on Communication in Healthcare (EACH), granted biennially to early-career researchers.

She is Associate editor of Patient Education and Counseling since 2017. She was the scientific co-chair of the 2018 European meeting of the Society of Medical Decision Making. She chairs the EACH standing committee on research since 2018 and is the co-chair of the upcoming EACH Forum, September 16-18 2019, Leiden, the Netherlands.