Jeff A. Sloan, PhD

 To collect normative data, assess differences between demographic groups, and indirectly compare US and Canadian medical systems relative to patient expectations of involvement in cancer treatment decision making.

 Individual patient data were compiled across 6 clinical studies among 3491 patients with cancer who completed the 2-item Control Preferences Scale indicating the roles they preferred versus actually experienced in treatment decision making.

The roles in treatment decision making that patients preferred were 26% active, 49% collaborative, and 25% passive. The roles that patients reported actually experiencing were 30% active, 34% collaborative, and 36% passive. Roughly 61% of patients reported having their preferred role; only 6% experienced extreme discordance between their preferred versus actual roles. More men than women (66% vs 60%, 

 = .001) and more US patients than Canadian patients (84% vs 54%, 

 <.001) reported concordance between their preferred versus actual roles. More Canadian patients than US patients preferred and actually experienced (42% vs 18%, 

 <.001) passive roles. More women than men reported taking a passive role (40% vs 24%,

 <.001). Older patients preferred and were more likely than younger patients to assume a passive role.

 Roughly half of the studied patients with cancer indicated that they preferred to have a collaborative relationship with physicians. Although most patients had the decision-making role they preferred, about 40% experienced discordance. This highlights the need for incorporation of individualized patient communication styles into treatment plans.

Roughly 50% of patients with cancer preferred to have a collaborative relationship with physicians in treatment decision making, and the remaining were split equally between preferring active and passive roles.

Most patients had the decision-making role they preferred, but about 40% of patients experienced discordance between their preferred and actual roles. n Being American and younger was associated with patient preference for a more active role.

Being Canadian was associated with greater discordance between preferred and actual roles experienced by the patient.

This study highlighted that individualized patient communication styles should be incorporated into treatment plans.

Control preferences regarding decision making among patients with cancer have been associated with patient outcomes.

 Several studies have demonstrated that patients who are involved in making medical decisions fare better

 than patients who do not. Based on the unfolding theory by Coombs,

 developed a reliable and easy-to-administer instrument to measure the degree of control a patient desires over his or her medical decisions wherein patients were asked to rank 5 different roles in order of preference. The measure was used in multiple nursing investigations. Hack et al found that there was potential for discordance among patients with cancer between the decision-making roles patients preferred and the roles they experienced (or were allowed to have) in the active or collaborative experience. The Control Preferences Scale (CPS) (

) asks patients 2 questions about how much decision-making control they would like to have and how much decision-making control patients perceived that they actually experienced. There are 5 response categories with associated stick figure drawings for each of the following 5 control options: active, active shared, collaborative, passive shared, and passive. The responses can be further collapsed into the following 3 categories of role responses: active, collaborative, and  passive.

There has been renewed interest in examining patient preferences regarding decision making because of the focus on patient-centered care,

 and the CPS is a brief and valid measure of this construct.

The CPS has been applied in studies across the world, including Sweden,

The CPS has been shown to have good psychometric properties.

 However, to date there has not been a compilation effort to provide collective normative data for others to reference. This article aims to fill that void.

have attempted to determine what factors are associated with desired levels of control preference in treatment decision making. Many investigations have shown that higher education level is associated with preference for a more active role. In a sample of 1012 Canadian women with breast cancer, Degner et al

 found that patients who were more educated and younger desired a more active role. Education level and length of follow-up were associated with choice of an active or collaborative role among 140 Italian patients with multiple sclerosis.

 In a national survey of 1000 Norwegian women older than 18 years, characteristics associated with more active role preferences were age 45 to 59 years (relative to younger and older age groups), higher education level, better general health status, and a negative attitude toward therapy.

of 5199 adults from Wisconsin, female sex, higher education level, better self-rated health, and fewer prescription medications predicted a significantly higher probability of the most active involvement in decision making. Role preference showed little variability over time. Hence, role preference may be more of an intrinsic personality trait that is consistent over time and situations.

Several other factors are also known to influence role preference. In a community survey of 514 men aged 50 to 70 years in Sydney, Australia, occupational skill level predicted men’s preferences for a passive role.

Patients with occupational skill levels 3 through 5 were significantly more likely to delegate decision making to physicians than were  managers and professionals. Shields and colleagues

 found that patients having prostate or breast cancer, less fatalistic orientation, and professional or managerial occupations preferred a shared or active role compared with patients having other cancers, more fatalistic orientation, and other occupations. In a population- based survey of 2765 adults, age younger than 45 years, excellent self-rated general health, female sex, and white (vs Hispanic) race/ethnicity were associated with preferences being more patient oriented (ie, more active role).

In a survey of Norwegian women with urinary incontinence, older age and being married were associated with lower likelihood of preferring an active role.

The differences between US and Canadian healthcare systems have been well documented.

 Despite the growing body of evidence for incorporating patient control preferences in medical care, it is unknown if preferences vary by country. This study pooled individual patient data from 6 studies conducted in the United States or Canada and included 3491 patients. The meta-analysis sought to determine (1) estimates of the overall distribution for preferences among patients with cancer in terms of role expectation and experience in treatment decision making, (2) the effect of selected demographic and clinical variables on patient preference and experience in treatment decision making, and (3) differences in control preferences between US and Canadian patients.

Data were compiled from 6 studies that administered the CPS to patient populations. The Study of Cancer Survivors I by the American Cancer Society

was intended to be a national (US) prospective longitudinal study among patients surviving 1 of 10 common cancers, including prostate, female breast, lung, colorectal, bladder, uterine, kidney, ovarian, skin melanoma, and non-Hodgkin’s lymphoma. We included patients from the state of Minnesota for the pooled analysis.

The Mayo Clinic Multi-Disciplinary Quality of Life Study

 investigated interventions to maintain overall quality of life in 103 patients undergoing radiation therapy for advanced-stage cancer. The patients were randomized to standard care or to a structured multidisciplinary intervention that included 8 sessions addressing cognitive, physical, emotional, spiritual, and social functioning domains relative to quality of life.

 studied a consecutive sample of 1012 women with a confirmed diagnosis of breast cancer at 2 tertiary oncology referral clinics and 2 community hospital oncology clinics. They performed a cross-sectional survey querying about patient preferences regarding participation in decision making for their care.

 investigated patient preferences in decision making among 434 consecutive adult patients with a new cancer diagnosis at 2 tertiary care referral clinics in Winnipeg, Manitoba, Canada. All patients were queried within 6 months of an initial diagnosis of cancer.

Hack and colleagues35 studied the efficacy of audiotaping primary adjuvant therapy consultations on information communication, satisfaction, and quality of life among 628 women with newly diagnosed breast cancer from 6 cancer centers in Canada. The patients were block randomized to 1 of the following 4 consultation groups: (1) standard care control and not audiotaped, (2) audiotaped but no audiotape given, (3) audiotaped and patient given audiotape, or (4) audiotaped and patient offered choice of receiving audiotape or not.

 studied the efficacy of providing an audiotape of primary treatment consultations to 472 men with newly diagnosed prostate cancer undergoing radiation therapy. Patients were recruited from 4 cancer centers in Canada and were block randomized to 1 of 4 consultation groups as described for the breast cancer study.

Data evaluated in this pooled analysis were CPS findings and patient demographics, including country, sex, and age. Among all studies, patients were categorized as having corcordance or discordance between the role in treatment decision making that they preferred and the role that they experienced. For each CPS question, the distribution of control (role preference and role experience) was summarized by simple proportions and by graphical representations of bar charts. Cross-tabulation of control preferences with demographic variables followed. The Fisher exact test was used to compare role distribution concordance and to measure association with clinical and demographic variables. For ease of interpretation, CPS preferences were categorized as active, collaborative, or passive as in previous studies.

 Multivariate logistic regression models were used to assess the effect of the univariately significant variables (age, sex, country, and tumor stage) in combination with each other to predict role preference and concordance between role preference and experience.

As suggested by a reviewer, we performed additional sensitivity analyses adjusting the aforedescribed multivariate-adjusted models for education level (grade school, high school,

more than high school, or not reported) to assess if the country-related and other associations with role preference and concordance were confounded by patient education. In addition, we performed these multivariate analyses considering all 5 CPS categories, instead of the 3 collapsed levels, per the reviewer’s suggestion.

The study cohort consisted of 3491 patients enrolled in 6 different cancer treatment trials (

). There were 2591 patients (74% of the total sample) from Canadian clinical trials and 900 patients (26% of the total sample) from US studies. Overall, the study included 68% female patients, 61% aged 65 years or older, and 29% with tumor stages 0 to 2 (

). Comparisons between the US and Canadian patient cohorts indicate more women, more patients 50 years or older, and more patients with early-stage disease among US patients. There is a considerable amount of missing data on tumor stage, so the latter finding needs to be interpreted with caution. All studies involved CPS assessment at the time of diagnosis or before treatment initiation except for the American Cancer Society study,

which was a cross-sectional study of survivors.

Overall Preferred and Actual Roles in Treatment Decision Making

Four percent of patients preferred an active role in treatment decision making, 22% an active shared role, 49% a collaborative role, 15% a passive shared role, and 9% a passive role (

). Collapsing these into 3 categories indicates that 26% of 3276 patients preferred an active role in treatment decision making, 49% a collaborative role, and 25% a passive role. The percentage of patients preferring an active role ranged from 12% in the multitumor study by Degner and Sloan

 to 36% in the American Cancer Society study.

The decision making that patients reported actually experiencing were 4% active, 26% active shared, 34% collaborative, 14% passive shared, and 22% passive (Table 3). Collapsing these into 3 categories indicates that 30% of patients reported that they experienced an active role, 34% a collaborative role, and 36% a passive role. The percentage of patients experiencing an active role ranged from 18% in the Mayo Clinic Multi- Disciplinary Quality of Life Study33 to 40% in the prostate cancer study by Hack et al.

Role preferences were compared to determine whether preferred roles were in concordance with actual roles (

). Overall, there was roughly 61% concordance (ie, patients’ preferred and actual roles were the same). Only 6% of patients experienced extreme discordance between their preferred and actual roles (ie, wanting an active role and experiencing a passive role, or vice versa). Twenty-six percent of patients preferred an active role, and 30% experienced an active role. Conversely, 36% of patients preferred a passive role, and 25% experienced a passive role. Among 1058 of 2742 patients (39%) reporting discordance between their preferred and actual roles, 453 (43%) had a more active role than they preferred, whereas 605 (57%) had a more passive role than they preferred.

Role Distributions by Sex, Country, Age, Tumor Stage, and Education Level

The distribution of patients by the roles they preferred versus actually experienced is broken down by sex in 

. There was little difference in the role distributions preferred by men versus women (Figure 1A). However, there was a significant difference in the distribution of the actual roles patients experienced, with more women than men reporting taking a passive role (40% vs 24%, 

More US patients than Canadian patients preferred active roles (32% vs 22%, 

<.001), whereas more Canadian patients than US patients preferred (33% vs 14%, 

<.001) and actually experienced (42% vs 18%, 

). American men preferred and actually experienced more active and collaborative roles than Canadian men (

). Canadian men actually experienced a more active role versus what they preferred (40% versus 24%, 

= .004). American women preferred a less passive role than Canadian women (10% vs 33%, 

<.001) and actually experienced a less passive role than Canadian women (17% vs 45%, 

The preferred and experienced role distributions varied across age groups. More older patients (>50 years) than younger patients preferred a passive role in treatment decision making (32% vs 21%, 

<.001). More younger patients (<50 years) than older patients preferred an active role (31% vs 22%, 

<.001). More older patients than younger patients actually experienced a passive role (38% vs 30%, 

<.001). More younger patients than older patients actually experienced an active role (34% vs 29%, 

In the subset of patients for whom tumor grade was available, there was no significant difference in the preferred role distribution between patients having tumor stages 0 to 2 (24% active and 33% passive) versus patients having tumor stages 3 to 5 (21% active and 36% passive) (

= .50). However, there was a difference in the actual role distribution, with more patients having tumor stages 0 to 2 than those having tumor stages 3 to 5 actually experiencing an active role (30% vs 22%, 

The preferred role differed by education level. Grade school, high school, and more than high school education levels were associated with preference for a passive role in 49%, 32%, and 22% of patients, respectively (

<.001). A passive actual role was experienced by 64%, 35%, and 23% of patients with grade school, high school, and more than high school education levels, respectively (

Concordance Between Preferred and Actual Roles by Sex, Country, Age, and Tumor Stage

= .001) reported concordance between their preferred and actual roles. More US patients than Canadian patients (84% vs 54%, 

<.001) reported concordance between their preferred and actual roles (

). Examination within sex and country of residence shows that US men had greater role concordance than Canadian men (85% vs 52%, 

<.001). This was also true for US women compared with Canadian women (85% vs 54%, 

 <.001). Among patients 65 years or older, 59% reported role concordance compared with 63% among patients aged 50 to 64 years and 62% among patients younger than 50 years (

= .18). Tumor stage did not affect concordance between preferred and actual roles (62% concordance for patients with tumor stages 0 to 2 vs 56% concordance for patients with tumor stages 3 to 5,

= .10). Patients with grade school education had 59% concordance between preferred and actual roles, those with high school education had 59% concordance, and those with more than high school education had 64% concordance (

Multivariate Modeling of Role Preference and Role Concordance

A polytomous logistic regression model was constructed using the preferred trichotomous role categorization (active, collaborative, and passive) to assess which demographic and clinical variables (age, sex, country, and tumor stage) were related to patients’ role preferences. Patients tended to prefer a more active role if they were American (odds ratio [OR],

Articles

This pooled analysis assesses preferred roles in treatment decision making, actual roles, and preferred versus actual discordance among 6 studies of patients with cancer.


Jeff A. Sloan, PhD

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