Shared decision making in cancer treatment: A Dutch national survey on patients' preferences and perceptions

1 INTRODUCTION

Over the last decades, health care has shifted away from its former paternalistic attitude towards a more patient-centred approach (Barry & Edgman-Levitan, 2012). Shared decision making (SDM) is a key component of patient-centred care (Barry & Edgman-Levitan, 2012; Härter et al., 2017). SDM is defined as “an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences” (Elwyn et al., 2010). It requires active participation from both health care provider (HCP) and patient, as they collaboratively weigh different treatment options in the light of priorities and values of the patient. The process of SDM is dynamic and complex but essentially consists of four key steps: (1) raising awareness of the fact that patients have a choice, (2) talking through the different options and discussing consequences of each option, including their probabilities, (3) discussing a patient's values, and—after some time for deliberation, supported by their HCP—(4) taking a decision based on informed preferences (Stiggelbout et al., 2015). There are multiple reasons why, especially in the field of oncology, there is great value in SDM. First, an increasing variety of cancer treatments is being developed and multiple treatment options are suitable with side-effects that may significantly affect the patients “quality of life” (Kane et al., 2014; Politi et al., 2011; Whitney et al., 2008). Second, the process of SDM ensures the discussion of treatment consequences and their probabilities (Berger, 2015; Kane et al., 2014; Ménard et al., 2012). This is important since—as a result of rising survival rates—an increasing number of former cancer patients are living with long-term consequences of their treatment (Khan et al., 2011). Thirdly, the fact that HCPs are insufficiently able to accurately predict patients' values (Kunneman et al., 2014; Lee et al., 2010; Stalmeier et al., 2007) underlines the importance of discussing patients' values (SDM step 3). Finally, SDM in cancer care, compared to the traditional style of communication, is associated with a higher perceived satisfaction with, and confidence in, treatment decisions (Kane et al., 2014), greater levels of treatment adherence (Kahn et al., 2007), perceived quality of life (Hack et al., 2006) and mental health (Arora et al., 2009).

Despite the need for SDM and its positive effects, it has been reported that SDM is not yet fully integrated into the decision-making process for cancer treatment (Covvey et al., 2019; Kunneman et al., 2016; Müller et al., 2016), especially concerning steps 2 and 3 of SDM. For instance, observations of consultations in multiple cancer care settings show that HCPs regularly steer towards active treatment while the option to choose no (further) treatment is left underexposed (Brom et al., 2017; Engelhardt et al., 2016). Furthermore, the amount of information provided to cancer patients during treatment decision processes may be insufficient (Rood et al., 2017). Observations also suggest that patients' values (SDM step 3) may be underexposed, since essential elements such as exploring a patient's expectations and concerns are only discussed in half of patients (Couët et al., 2015; Pieterse et al., 2019). In order to improve the integration of SDM in daily practice, it is important to know which elements of SDM are currently lacking in the cancer treatment decision-making process.

Therefore, we aim to explore to what extent (1) therapy options, (2) their consequences and (3) personal preferences are discussed during the SDM process, as perceived by (former) cancer patients and what patients would have wished to discuss regarding these topics.

2 METHODS

In 2018, an online questionnaire on how cancer patients perceived their decision-making process was developed and distributed by the Dutch Federation of Cancer Patient Organisations (NFK in Dutch) among their network of (former) cancer patients. NFK is an umbrella organisation in the Netherlands representing 19 cancer patient organisations. Annually, they develop and send out several questionnaires to explore cancer patients' needs and experiences.

2.1 Questionnaire development and content

The questionnaire (Appendix A) was developed by NFK, together with representatives of affiliated cancer patient organisations. Preferences and perceptions of (former) cancer patients regarding their treatment decision process were assessed with numeric, multiple-choice questions and open-ended questions. Conditional logic was applied. First, a validation question was asked to confirm that respondents have (had) cancer. Of the (former) cancer patients, patients who reported that they did not discuss one or more treatments were excluded from further analysis. Respondents were able to quit the questionnaire at any time. Responses were only included if respondents finished all demographic questions in addition to at least one decision-making-related question.

Basic demographic information was collected: type of cancer, time since the last cancer treatment decision was made, and time since the last treatment. Then, using the structure of the key steps of SDM (Stiggelbout et al., 2015), questions were asked to explore the extent to which patients perceived that SDM took place during their treatment process. SDM step 2 was explored with use of questions 9, 12–19, and 22 and 23; SDM step 3 was explored with use of questions 20 and 21. This included discussing the option to choose no (further) treatment and its perceived importance rated on a scale of 1 to 10 (1 = not important, 10 = very important). It also included exploring to which extent patients perceived that short- and long-term consequences were discussed, and if not, should preferably have been discussed in retrospect. Finally, respondents were asked to rate to which extent—in their perception—the topics “what is important to patients in daily life” and “their future plans,” were discussed during their decision-making process.

The survey was reviewed for content and face validity by co-authors with expertise in the field of SDM and patient involvement, through a continuous process of reflection within the team, resulting in an iterative version of the questionnaire.

2.2 Distribution and data collection

The questionnaire was distributed by NFK in October 2018 among members and followers of affiliated cancer patient organisations, by email, newsletter and/or website. NFK also posted a direct link to the questionnaire on their website and all their social media channels, and asked affiliated organisations to post the questionnaire. Furthermore, a group of cancer patients who volunteered to participate in NFK's questionnaire panel received an invitation via email to fill out the questionnaire. Recipients were given 2 weeks to complete the survey. Data were collected anonymously with the use of the online tool “Survey Monkey.”

2.3 Data analysis

IBM SPSS Statistics version 25 was used for all analyses. Categorical variables are presented as numbers and percentages, continuous variables are presented as mean and standard deviation if normally distributed and otherwise as the median and interquartile range (IQR). Percentages were calculated by consistently using the total of patients included in our study as a denominator. Descriptive analyses were performed to explore differences for subgroups of our population, based on cancer type.

3 RESULTS 3.1 Study population

A total of 3785 (former) cancer patients filled out the questionnaire. Of these respondents, 3254 (86.0%) patients discussed one or multiple treatments with their HCP and were included. Patient characteristics are presented in Table 1. The mean age was 62.1 (±11.5) and 55.1% of participants were female. The most prevalent cancer types were breast (27.2%), haematological (17.8%), and colon (17.3%) cancer. A majority of patients (88.1%; N = 2867) expressed a preference for SDM regarding their cancer treatment.

TABLE 1. Characteristics of the study population (N = 3254) Age, years (SD) 62.1 (11.5) Sex, female (%) ≤60 years old 1054 (77.3) >60 years old 738 (39.0) Diagnosis, (%) Breast cancer 886 (27.2) Haematological cancer 579 (17.8) Colon cancer 563 (17.3) Prostate cancer 400 (12.3) Bladder cancer 195 (6.0) Melanoma/skin cancer 120 (3.7) Gynaecological cancer 118 (3.6) Lung cancer 77 (2.4) Other 316 (9.7) Median time since last treatment (IQR) 2 (0–5) Median time since last treatment decision (IQR) 2 (0–5) Hospital type where patients were treated (%) Academic (or specialised in cancer-care) 1013 (31.1) “Top-clinical” 1277 (39.2) General 917 (28.2) Other 47 (1.4) Median number of HCPs involved (IQR) 1 (1–2) Abbreviations: HCPs, health care providers; IQR, interquartile range; SD, standard deviation. 3.2 SDM step 2: Discussing the different treatment options and their consequences

Forty-two per cent of patients (N = 1352) reported that only one treatment was discussed during the decision-making process. The importance of discussing the option to choose no (further) treatment was rated by 2751 (84.5%) patients, with a median score of 9 out of 10 (IQR 8–10). Twenty-eight per cent of patients (N = 899) reported that the option to choose no (further) treatment was discussed.

Of all included patients, 80.7% (N = 2626) reported that short-term consequences of their treatment had been discussed (Table 2) and 53.1% (N = 1727) reported the discussion of long-term consequences. The short- and long-term consequences discussed are presented in Table 2.

TABLE 2. Perceived discussion of short- and long-term consequences in SDM process (SDM step 2) Discussion of short-term consequences, % (N) 80.7 (2626) Discussion of long-term consequences, % (N) 53.1 (1727) Discussion of short-term consequences % (N) Discussion of long-term consequences % (N) Fatigue 47.8 (1557) 25.1 (816) Diminished physical capacity 38.5 (1254) 18.7 (610) Sexual dysfunction NA 15.8 (515) Nausea/vomiting 28.9 (940) NA Gastrointestinal complaints 24.6 (802) 10.0 (324) Osteoporosis NA 9.0 (293) Hair loss 24.0 (780) NA Weight shift/problems eating or drinking 21.4 (696) 6.8 (220) Pain 19.6 (637) 6.7 (219) Neuropathy 18.2 (592) 10.9 (354) Cardiological problems NA 5.9 (191) Hormonal dysfunction 16.2 (527) 9.0 (293) Oral/dental problems 15.6 (507) 4.4 (143) Concentration problems 13.2 (428) 8.2 (266) Incontinence 11.2 (364) 7.9 (257) Lymphedema 9.9 (321) 6.0 (196) Memory problems 8.8 (286) 5.9 (191) Depressive symptoms 8.8 (285) 5.3 (174) Fertility problems NA 4.9 (160) Secondary tumours NA 4.0 (130) Dyspnoea/shortness of breath 6.1 (199) NA Stress 5.9 (192) 3.0 (99) Anxiety 5.4 (176) 3.3 (107) Note: Higher means or medians indicate more discussion. Abbreviations: NA, not applicable; SDM, shared decision making.

When asked “Are there any short-term consequences that were left undiscussed, which you would have preferred to have discussed” patients answered “yes” in 22.4% of cases (N = 728) (Table 3). Most reported short-term consequences that patients would like to have discussed, but were not, were fatigue (6.8%), diminished physical capacity (6.6%), and concentration problems (5.4%).

TABLE 3. Preferred but not perceived discussion of short- and long-term treatment consequences (SDM step 2) Breast cancer Haematological cancer Colon cancer Prostate cancer Other cancer types Total N = 886 N = 579 N = 563 N = 400 N = 826 Short-term Long-term Short-term Long-term Short-term Long-term Short-term Long-term Short-term Long-term Preferred but not perceived discussion consequencesa 26.7 (273) 36.2 (321) 20.4 (118) 25.6 (148) 17.4 (98) 17.6 (99) 13.3 (53) 17.0 (68) 22.5 (186) 23.8 (197) Fatiguea 10.3 (91) 16.4 (145) 5.5 (32) 10.2 (59) 4.6 (26) 7.1 (40) 3.3 (13) 4,0 (16) 7.0 (58) 9.6 (79) Diminished physical capacitya 10.2 (90) 13.3 (118) 4.3 (25) 7.4 (43) 5.3 (30) 5.0 (28) 3,0 (12) 4.3 (17) 7.0 (58) 7.6 (63) Sexual dysfunctiona NA 9.8 (87) NA 4.5 (26) NA 6.9 (39) NA 6.5 (26) NA 5.2 (43) Gastrointestinal complaintsa 3.3 (29) 3.0 (27) 4.1 (24) 3.3 (19) 3.7 (21) 2.3 (13) 2.5 (10) 2.8 (11) 3.8 (31) 3.6 (30) Osteoporosisa NA 7.8 (69) NA 2.9 (17) NA 1.8 (10) NA 2.5 (10) NA 2.8 (23) Weight shift/problems eating or drinkinga 5.8 (51) 6.7 (59) 2.8 (16) 2.1 (12) 3.2 (18) 2.3 (13) 1.0 (4) 1.0 (4) 3.0 (25) 3.5 (29) Paina 6.5 (58) 10.2 (90) 2.6 (15) 2.9 (17) 2.3 (13) 1.8 (10) 2.0 (8) 1.5 (6) 4.0 (33) 4.1 (34) Neuropathya 8.1 (72) 11.5 (102) 5.2 (30) 7.4 (43) 2.1 (12) 3.7 (21) 0.3 (1) 0.8 (3) 3.3 (27) 3.9 (32) Cardiological problemsa NA 7.1 (63) NA 4.1 (24) NA 0.9 (5) NA 0.8 (3) NA 1.7 (14) Hormonal dysfunctiona 6.5 (58) 10.2 (90) 1.9 (11) 1.2 (7) 0.9 (5) 1.2 (7) 2.5 (10) 2.0 (8) 1.5 (12) 2.1 (17) Oral/dental problemsa 8.0 (71) 9.0 (80) 2.6 (15) 3.6 (21) 1.2 (7) 0.9 (5) 1.3 (5) 1.3 (5) 2.1 (17) 3.0 (25) Concentration problemsa 9.1 (81) 15.3 (136) 5.5 (32) 8.5 (49) 3.0 (17) 3.2 (18) 1.0 (4) 1.3 (5) 5.2 (43) 6.9 (57) Lymphedemaa 6.8 (60) 9.1 (81) 0.7 (4) 0.3 (2) 0.5 (3) 0.5 (3) 1.5 (6) 1.5 (6) 1.5 (18) 3.9 (32) Memory problemsa 8.8 (78) 14.2 (126) 4.8 (28) 7.8 (45) 2.7 (15) 2.3 (13) 1.0 (4) 1.5 (6) 4.4 (36) 6.1 (50) Depressive symptomsa 8.8 (78) 9.1 (81) 3.3 (19) 4.7 (27) 2.5 (14) 2.3 (13) 2.3 (9) 4.0 (16) 5.8 (48) 6.1 (50) Secondary tumoursa NA 3.2 (28) NA 2.8 (16) NA 1.1 (6) NA 1.3 (5) NA 1.7 (14) Stressa 5.3 (47) 4.6 (41) 2.6 (15) 2.9 (17) 1.1 (6) 2.1 (12) 1.5 (6) 0.8 (3) 2.8 (23) 4.2 (35) Anxietya 5.3 (47) 6.8 (60) 3.5 (20) 2.6 (15) 3.2 (18) 2.3 (13) 1.0(4) 2.3(9) 4.7 (39) 5.1 (42) Dyspnoea/shortness of breatha 4.7 (42) NA 1.7 (10) NA 0.7 (4) NA 0.5 (2) NA 1.7 (14) NA Note: The following treatment consequences were reported by less than 2% of the study population and are not presented in this table: nausea, hair loss, incontinence, and fertility problems. Higher means or medians indicate higher levels of preferred but not perceived discussion. Abbreviations: NA, not applicable; SDM, shared decision making. a Results presented as % (N).

Of all included patients, 25.6% (N = 833) reported the preference to talk about long-term consequences that were left undiscussed. The most reported long-term consequences which were preferred but were left undiscussed again included fatigue (10.4%), diminished physical capacity (8.3%), and concentration problems (8.1%).

3.3 SDM step 3: Discussing patient's values

Forty-four per cent of patients (N = 1434) reported that their HCP discussed with them what they consider important in daily life (Table 4). The discussion of future plans was reported by 33.6% of patients (N = 1093).

TABLE 4. Perceived discussion of patient's preferences (SDM step 3) All included patients Breast cancer Haematological cancer Colon cancer Prostate cancer Melanoma/skin cancer Other cancer types Total N = 3254 N = 866 N = 579 N = 563 N = 400 N = 120 N = 706 Perceived discussion of what is important in daily life, % (N) 44.1 (1434) 40.4 (350) 42.3 (245) 46.0 (259) 50.0 (200) 30.0 (36) 48.7 (344) Perceived discussion of future plans, % (N) 33.6 (1093)

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