Table 2.

Overview of the patient-reported outcomes and instruments used per timepoint

Measure	Description	Scoring range	Preimplementation phase			Postimplementation phase
			Baseline	T1	T2	Baseline	T1	T2
All patient groups:
Shared decision-making
SDM-Q-927 28(primary outcome measure)	9-item, 6-point scale measures patients’ perceived level of involvement in decision-making.	Range 0–45, higher scores indicate a greater level of perceived involvement in decision-making.	X			X
CollaboRATE36	3-item, 10-point scale measures patient-reported SDM.	Range 0–100, higher scores indicate a higher patient-reported SDM.	X			X
Decisional conflict
DCS37	16-item, 5-point scale measures personal perceptions of (a) uncertainty in choosing options, b) modifiable factors contributing to uncertainty and c) effective decision-making.	Range 0–100, higher scores indicate greater decisional conflict.	X			X
Decision regret
Stoke and advanced kidney disease: DRS38	5-item, 5-point scale measures distress or remorse after a healthcare decision.	Range 0–100, higher scores indicate greater regret.		X	X		X	X
(Preferred) role in decision-making
CPS39	1-item with 5 response options to assess the patient’s preferred or perceived degree of control when decisions about treatment are being made.		X			X
Patients’ knowledge regarding their disease and treatment options (patient group-specific items)
Breast cancer: Stroke: Advanced kidney disease:	10 items with 3 response options. 7 items with 3–7 response options. 7 items with 3–5 response options.		X X X			X X X
Quality of life
Breast cancer and advanced kidney disease: SF-1240 41	12-items with 2–6 response options on quality of life.	Mental and physical component score based on the US population scoring system, higher scores indicate greater quality of life.	X	X	X	X	X	X
Stroke: PROMIS Global-1042 EQ-5D-5L43 44 EQ-VAS43	10 items with 5–11 response options on quality of life. 5 items, 5-point scale measures patients’ health-related quality of life. VAS measures patients’ health-related quality of life.	Physical and mental health summary scores based on the US population scoring system, higher scores indicate greater quality of life. Range −0.446–1 based on the Dutch population tariff, higher scores indicate greater health-related quality of life. Range 0–100, higher scores indicate greater health-related quality of life.		X X X			X X X
Preferred and chosen care (and the role of the consultation and outcome data therein) (patient group-specific items)
Breast cancer: Stroke: Advanced kidney disease	48 items with 3–10 response options/open-ended. 6 items with 3–8 response options/open-ended. 9 items with 2–9 response options/open-ended.		X X X			X X X
Satisfaction with the intervention
Prep-DM45	10-item, 5-point scale measures patients’ perception of how useful the PtDA is in preparing them to communicate with their health care professional during consultations, and for making a healthcare decision.	Range 0–100, higher scores indicate higher perceived level of preparation for decision-making.				X
Study-specific items	24 items with 2–8 response options/open-ended to assess (1) the way in which the PtDA has been presented to the patient, (2) the experience of the patient with using the PtDA, and (3) the extent to which the PtDA is of value to the patient.					X
Breast cancer:
Perceived risk and fear of recurrence
CWS46	6-item, 4-point scale measures concerns about cancer recurrence and the impact of these concerns on daily functioning.	Range 6–24, higher scores indicate greater worrying.	X	X	X	X	X	X
IPQ-BCS (cure and personal control subscale)47	2×4 item, 5-point scale measures (a) patients’ cure beliefs and (b) personal control over the risk for recurrences.		X	X	X	X	X	X
Patient group-specific items based on CRHWS,48 FCR749and FoP-Q50	9 items with 4–6 response options to assess patients’ feelings about imaging during follow-up and worry about cancer recurrence, and to assess patients’ perceived (absolute and comparative) risk of recurrence.		X	X	X	X	X	X
Stroke:
Participation/functioning
Simplified mRS51	5-item, 2-point scale measures the degree of dependence of patients with stroke.	Range 0–5, higher scores indicate greater dependence.		X			X
USER-P restriction subscale52	11-item, 5-point scale measures experienced restrictions on 11 domains of participation.			X			X
Caregivers’ strain
CSI53	13-item, 2-point scale measures strain related to care provision.	Range 0–13, ≥7 indicates a higher level of strain.		X			X

CPS, Control Preference Scale; CRHWS, Cancer-Related Health Worries Scale; CSI, Caregiver Strain Index; CWS, Cancer Worry Scale; DCS, Decisional Conflict Scale; DRS, Decision Regret Scale; EQ-5D-5L, five-dimension EuroQol five-levels questionnaire; FCR7, seven-item Fears of Cancer Recurrence; FoP-Q, Fear of Progression Questionnaire; IPQ-BCS, modified version of the Revised Illness Perception Questionnaire for breast cancer survivors; mRS, modified Ranking Scale; Prep-DM, Preparation for Decision Making scale; PROMIS, Patient Reported Outcomes Measurement Information System; PtDA, patient decision aid; SDM-Q-9, 9-item Shared Decision Making Questionnaire; SF-12, 12-item Short Form Health Survey; USER-P, Utrecht Scale for Evaluation of Rehabilitation-Participation; VAS, Visual Analogue Scale.