. 2021 Jun 28;30(10):1663–1679. doi: 10.1002/pon.5750

TABLE 2.

Overview of the included studies, presenting study characteristics, the reported level of preferred, perceived involvement and disconcordance between the preferred and perceived level of involvement

Reference	Research design	Study population	Decision, moment, measurement	Preferred level of involvement	Perceived level of involvement	Disconcordance between preferred and perceived level of involvement	Disconcordance per level
		N = number of participants, age, type of cancer, stage cancer, country	Type of treatment decision Moment of measurement Questionnaire	N = number of decisions evaluated % of patient preferring an active, shared or passive role	N = number of decisions evaluated % of patient perceiving an active, shared or passive role
Aminaie, 2019 ²⁶	Cross‐sectional study	N = 328, mean 46 years, breast cancer, stage I‐II, Iran	Surgery Post decision CPS & SDM Q9	N = 328 Active: 1% Shared: 8% Passive: 91%	N = 328 Active: 8% Shared: 78% Passive: 14%	Not reported
Atherton, 2013 ⁹	Cross‐sectional study	N = 594, mostly >60 years, various cancer, stage I‐IV, US	Treatment Post decision CPS	N = 594 Active: 35% Shared: 53% Passive: 13%	N = 594 Active: 33% Shared: 50% Passive: 17%	Disconcordance: 12%
Berger, 2018 ²⁷	Cross‐sectional study	N = 873, mean 59 years, breast cancer, stage I‐III, US	Adj. chemotherapy Post decision Modified version CPS	N = 868 Active: 31% Shared: 51% Passive: 19%	N = 873 Active: 28% Shared: 41% Passive: 31%	Disconcordance: 53%
Bieber, 2018 ⁵³	RCT	N = 107, mean 64 years, breast & colon cancer, stage I‐IV, Germany	Treatment Post decision CPS &PPS	N = 96 Active: 19% Shared: 60% Passive: 21%	N = 96 Active: 25% Shared: 51% Passive: 24%	Disconcordance: 28%	Active: 28% Shared: 26% Passive: 35%
Brown, 2012 ²⁸	RCT	N = 683, mean 54 years/57 years, breast cancer, early stage, Australia, New Zealand, & Switzerland, Germany, Austria	Adjuvant therapy 2w pre & 2w post consult CPS	N = 683 Active: 24% Shared: 48% Passive: 28%	N = 683 Patient: 28% Shared: 26% Passive: 46%	Disconcordance: 63%	Active: 69% Shared: 64% Passive: 57%
Burton, 2017 ²⁹	Cross‐sectional study	N = 101, included ≥75 years, breast cancer, early stage, UK	Surgery versus endocrine, post decision CPS	N = 93 Active: 39% Shared: 24% Passive: 38%	N = 93 Active: 41% Shared: 14% Passive: 45%	Disconcordance: 26%	Active: 19% Shared: 59% Passive: 11%
Carey, 2012 ³⁹	Cross‐sectional study	N = 268, mean 60 years, haematologic cancer, stage unknown, Australia	Last important decision Post decision Modified version CPS	N = 235 Active: 25% Shared: 30% Passive: 46%	N = 235 Active: 20% Shared: 22% Passive: 58%	Disconcordance: 23%	Active: 28% Shared: 44% Passive: 8%
Engelhardt, 2020 ³⁰	Multicenter observational study	N = 101, mean 61 years, breast cancer, stage I‐III, The Netherlands	Adj. systemic treatment Post decision CPS & open question	N = 101 Active: 38% Shared: 40% Passive: 23%	N = 101 Active: 56% Shared: 9% Passive: 36%	Disconcordance: 51%	Active: 23% Shared: 83% Passive: 41%
Ghoshal, 2019 ⁴⁶	Cross‐sectional study	N = 150, median 47 years, various cancer, advanced stage, India	Treatment Post decision Modified version CPS	N = 150 Active: 27% Shared: 21% Passive: 53%	N = 150 Active: 21% Shared: 19% Passive: 59%	Not reported
Hamelinck, 2018 ³¹	Prospective study	N = 122, mean 60 years, breast cancer, early stage, The Netherlands	BCS + RT versus mastectomy Pre & post decision Modified version CPS	N = 156 Active: 34% Shared: 51% Passive: 15%	N = 156 Active: 45% Shared: 33% Passive: 22%	Disconcordance: 60%	Active: 47% Shared: 65% Passive: 71%
Herrmann, 2018 ⁴⁷	Cross‐sectional study	N = 423, mean 64 years, various cancer, early & advanced stage, Australia	Last important decision Post decision Modified version CPS	N = 416 Active: 31% Shared: 39% Passive: 30%	N = 416 Active: 28% Shared: 36% Passive: 37%	Disconcordance: 20%	Active: 23% Shared: 27% Passive: 7%
Hitz, 2013 ⁴⁸	Cross‐sectional study	N = 480, median 67 years, various cancer, advanced, Switzerland	New line palliative treatment Post decision CPS	N = 463 Active: 11% Shared: 45% Passive: 44%	N = 463 Active: 13% Shared: 38% Passive: 50%	Disconcordance: 29%	Active: 42% Shared: 37% Passive: 18%
Hotta, 2010 ⁴¹	Substudy of RCT	N = 28, median 67 years, lung cancer, stage IIIb/IV, Japan	Chemotherapy Post decision Pre + Per: CPS	N = 28 Active: 14% Shared: 61% Passive: 25%	N = 28 Active: 29% Shared: 46% Passive: 25%	Disconcordance: 32%	Active: 25% Shared: 35% Passive: 29%
Hou, 2014 ⁴³	Cross‐sectional study	N = 113, mean 63 years, colorectal cancer, stage unknown, China	Surgery Post decision Modified version CPS	N = 113 Active: 10% Shared: 35% Passive: 54%	N = 113 Active: 24% Shared: 18% Passive: 59%	Disconcordance: 28%	Active: 14% Shared: 54% Passive: 14%
Kehl, 2015 ⁵³	Cross‐sectional study	N = 5315, included 18+, colon & lung cancer, stage I‐IV, US	Surgery, CT, RT Post decision CPS	N = 8191 decision by 5170 patients Active: 36% Shared: 59% Passive: 6%	N = 8191 decision by 5170 patients Active: 40% Shared: 47% Passive: 13%	Disconcordance: 40%	Active: 38% Shared: 39% Passive: 52%
Mack, 2019 ⁴⁹	Cross‐sectional study	N = 203, included 15–29 years*, various cancer, stage unknown, US	Treatment Post decision CPS	N = 150 Active: 18% Shared: 63% Passive:19%	N = 148 Active: 24% Shared: 42% Passive: 34%	Disconcordance: 34%
Mansfield, 2019 ⁵⁰	Cross‐sectional study	N = 355, mean 61 years, various cancer, stage unknown, Australia	Last important decision Post decision Modified version CPS	N = 341 Active: 36% Shared: 32% Passive: 32%	N = 341 Active: 33% Shared: 27% Passive: 40%	Disconcordance: 30%	Active: 25% Shared: 42% Passive: 23%
Moth, 2016 ⁴²	Observational cohort	N = 98, median 64 years, lung cancer, I‐IIIB, Australia & New Zealand	Adj. chemo Post decision CPS	N = 98 Active: 27% Shared: 47% Passive: 27%	N = 98 Active: 24% Shared: 48% Passive: 28%	Disconcordance: 19%	Active: 27% Shared: 15% Passive: 19%
Moth, 2019 ⁵¹	Cross‐sectional study	N = 179, median 74 years, various cancer, advanced stage, Australia	Palliative chemotherapy Post decision CPS	N = 172 Active: 39% Shared: 26% Passive: 35%	N = 172 Active: 42% Shared: 22% Passive: 36%	Disconcordance: 25%	Active: 18% Shared: 42% Passive: 20%
Nakashima, 2012 ³²	Cross‐sectional study	N = 104, majority >50 years, breast cancer, stage 0‐III, Japan	Treatment Post decision CPS	N = 104 Active: 18% Shared: 69% Passive: 13%	N = 104 Active: 27% Shared: 43% Passive: 30%	Disconcordance: 41%	Active: 37% Shared: 46% Passive: 23%
Nguyen, 2014 ³³	Cross‐sectional Study	N = 238, mean 56 years, breast cancer, stage I‐II, France	Treatment Post decision TDM examples	N = 216 Active: 3% Shared: 30% Passive: 67%	N = 238 Active: 2% Shared: 10% Passive: 88%	Not reported
Nicolai, 2016 ⁵⁴	Prospective parallel‐group cluster‐randomised controlled trial	N = 71, mean 64 years, breast & colon cancer, stage I‐IV, Germany	Treatment Post decision CPS & PPS	N = 71 Active: 21% Shared: 65% Passive: 14%	N = 71 Active: 27% Shared: 52% Passive: 21%	Disconcordance: 34%
Nies, 2017 ³⁴	Cross‐sectional study	N = 204, mean 54 years, breast cancer, all stages, Malaysia	Treatment Pre + post decision CPS + PPS	N = 204 Active: 10% Shared: 48% Passive: 43%	N = 204 Active: 9% Shared: 52% Passive: 39%	Disconcordance: 9%	Active: 10% Shared: 4% Passive: 14%
Palmer, 2013 ⁴⁵	Cross‐sectional study	N = 181, mean 61 years, prostate cancer, stage unknown, US	Treatment Post decision Modified version CPS	N = 181 Active: 45% Shared: 39% Passive 16%	N = 181 Active: 46% Shared: 39% Passive: 15%	Disconcordance: 3%	Active: 1% Shared: 3% Passive: 10%
Sepucha, 2009 ³⁵	Pilot intervention study	N = 32, median 55 years, breast cancer, advanced stage, US	Treatment Post decision Modified version CPS	N = 32 Active: 7% Shared: 72% Passive: 21%	N = 24 Active: 13% Shared: 42% Passive: 46%	Disconcordance: 62%
Seror, 2013 ³⁶	Cohort study	N = 415, mean 39 years, breast cancer, stage 0‐III, France	Surgery, chemotherapy, adjuvant endocrine therapy Pre + post start treatment CPS	N = 945 decision Active: 14% Shared: 27% Passive: 59%	N = 945 decision Active: 2% Shared: 19% Passive: 79%	Disconcordance: 46%	Active: 95% Shared: 77% Passive: 21%
Stacey, 2010 ⁵²	Descriptive study	N = 192, mean 60 years, various cancer and stages, Canada	Chemotherapy, radiotherapy Post decision Modified version CPS	N = 192 Active: 51% Shared: 33% Passive: 17%	N = 192 Active: 55% Shared: 35% Passive: 10%	Not reported
Van Stam, 2018 ⁴⁴	Prospective, multicenter, observational study	N = 454, mean 67 years, prostate cancer, cT1‐cT2, Netherlands	Treatment options: AS, RP, external beam RT and Brachy Pre + post treatment CPS	N = 454 Active: 89% Passive: 11%	N = 454 Active: 87% Passive: 13%	Disconcordance: 17%	Active: 11% Shared: ‐ Passive: 67%
Wang, 2018 ³⁷	Cross‐sectional study	N = 154, mean 47 years, breast cancer, stage 0‐II, Taiwan	Surgery Post decision Self‐developed CPS	N = 154 Active: 18% Shared: 55% Passive: 27%	N = 154 Active: 12% Shared: 63% Passive: 25%	Disconcordance: 31%	Active: 59% Shared: 20% Passive: 36%
Yamauchi, 2017 ³⁸	Cross‐sectional study	N = 650, included 20‐69 years, breast cancer, stage 0‐IV, Japan	Treatment Post decision CPS	N = 650 Active: 37% Shared: 50% Passive: 13%	N = 650 Active: 48% Shared: 30% Passive: 22%	Disconcordance: 43%
Yogaparan, 2009 ⁴⁰	Cross‐sectional study	N = 31, mean 64 years, acute myeloid leukaemia, stage unknown, Canada	Treatment Post decision CPS	N = 31 Active: 16% Shared: 32% Passive: 52%	N = 31 Active: 23% Shared: 39% Shared: 39%	Not reported

Abbreviations: BCS, breast conversing surgey; CPS, control preference scale; CT, chemotherapy; PPS, patient perception scale; RT, radiotherapy; TDM, treatment decision making; SDM, shared decision making. *We only use data 18+.