Mariken Stegmann

(Chapter 5), more than half of the patients (16/29) changed their goals during follow ‐ up. This suggests that it is essential to discuss treatment goals not only directly after diagnosis but also regularly as the disease and treatment progresses. It was also relevant that patients in the late stage of their disease (47%, n = 7) changed goals more often than those in the early phase of their disease (21%, n = 3). Step 4: Time ‐ out and decision After discussing preferences, some models of SDM suggest that patients should take time to reflect before making a decision. 27 However, time is rarely put aside for this in practice. 18,28,29 The findings in Chapter 4 indicate that it is possible to have a meaningful and deliberative conversation with a GP at some point between diagnosis and starting treatment. That said, many patients were excluded (39/268) because they had already started treatment when contacted. The same problem has been reported elsewhere, 30 reflecting the short window between diagnosis and treatment. Addressing factors at both the patient and the hospital level may help to correct this issue. Patients who have just received a cancer diagnosis often want to start treatment immediately in the hope of achieving maximum benefits. This is an understandable urge, but given that most tumours grow slowly, treatment outcomes are frequently unaffected by having a time ‐ out period to consider options. Indeed, a systematic review has produced contradictory evidence for the relationship between time to treatment and cancer outcomes, 31 and literature shows that patients are usually more satisfied when they have more than one conversation about their treatment decision. 32 Urgency can be felt in hospitals because of waiting time requirements. Multidisciplinary oncological care standards state that the time between the first visit to the medical specialist and start of treatment should not exceed 6 weeks. 33 This time frame includes any diagnostic activities and necessary precautions for treatment to start, leaving only a short period between diagnosis and the possibility of making a treatment choice. In the OPTion study (Chapter 4), this period was ≤ 1 week for most patients. The Dutch Cancer Federation ( KWF Kankerbestrijding ) has mentioned even stricter time frames. Although these standards are meant to ensure a good quality of care, we should consider whether they are counterproductive to patient ‐ centered care and require adjusting to allow for a time ‐ out period. For example, it may be wise to apply separate waiting time requirements to the time between referral and diagnosis, time between diagnosis and treatment decision and time between treatment decision and starting that treatment. The second one should than be wide enough (e.g. 3 weeks) to provide time for deliberation and a conversation with the GP. It is important to note that not all patients want to make a decision themselves: some prefer to delegate the decision to their health care provider. 34 However, for the health care provider to make the right decision in these cases, it remains important that they follow the SDM procedure through the first three steps, before departing in step 4, where they should summarise the detail of the preceding steps and make a decision that reflects what they have ascertained. Effects of shared decision making SDM can have positive effects when all relevant persons are involved and all essential steps have been taken. A systematic review showed that SDM using decision aids can lead to increased knowledge, fewer decision ‐ related conflicts, and fewer people being passive when 8 111 Summary and General discussion