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
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.
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.
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.