The Impact of Patient Participation in Health Decisions Within Medical Encounters

Abstract

Background: Although there are compelling moral arguments for patient participation in medical decisions, the link to health outcomes has not been systematically explored. Objective: Assess the extent to which patient participation in decision making within medical encounters is associated with measured patient outcomes. Methods: We conducted a primary search in PubMed—excluding non-English and animal studies—for articles on decision making in the context of the physician–patient relationship published through the end of February 2015, using the MeSH headings (Physician-Patient Relations [MeSH] OR Patient Participation [MeSH]) and the terms (decision OR decisions OR option OR options OR choice OR choices OR alternative OR alternatives) in the title or abstract. We also conducted a secondary search of references in all articles that met the inclusion criteria. Results: A thorough search process yielded 116 articles for final analysis. There was wide variation in study design, as well as measurement of patient participation and outcomes, among the studies. Eleven of the 116 studies were randomized controlled trials (RCTs). Interventions increased patient involvement in 10 (91%) of the 11 RCTs. At least one positive outcome was detected in 5 (50%) of the 10 RCTs reporting increased participation; the ratio of positive results among all outcome variables measured in these studies was much smaller. Although proportions differed, similar patterns were found across the 105 nonrandomized studies. Conclusions: Very few RCTs in the field have measures of participation in decision making and at least one health outcome. Moreover, extant studies exhibit little consistency in measurement of these variables, and results are mixed. There is a great need for well-designed, reproducible research on clinically relevant outcomes of patient participation in medical decisions.

Keywords

patient participation patient engagement shared decision making physician-patient communication measurement outcomes

Patient engagement is garnering considerable attention in the context of patient-centered care, accountable care, healthcare reform, and the Institute for Healthcare Improvement (IHI) Triple Aim of improving patient care, improving population health, and reducing cost.¹ Indeed, in 2013, an entire issue of Health Affairs was devoted to the topic of patient engagement.² Of course, patient engagement and patient participation are not new concepts. Seminal research conducted in the 1980s by the team of Greenfield, Kaplan, and Ware links patient participation in medical care to improved health outcomes for patients with chronic illness.^3–5 Similarly, work on motivational interviewing by Miller and Rollnick, which also stems from the 1980s, demonstrates that guiding patients through decisions to change behavior (e.g., alcohol use) can elicit and strengthen motivation for change.⁶

This study focuses on patient participation in medical decisions, which is widely considered beneficial.^7–16 Many healthcare providers, patients, ethicists, medical educators, and researchers—ourselves included—have written about the importance of shared decision making (SDM).^17–21 There are clear moral and ethical grounds for patient participation in decisions about their health.^21,22 However, the scope and strength of empirical support are not clear. Although the Greenfield, Kaplan, and Ware studies have frequently been cited as evidence that patient participation in decision making is beneficial, it is difficult to determine which elements of the intervention actually led to the reported benefits: The studies involved coaching patients to ask questions, negotiate medical decisions, and overcome barriers such as embarrassment and anxiety to take a more active role in their care.^3–5 This is a complex intervention, the components of which are difficult to disentangle. Perhaps most important in the context of our investigation, the results reported do not clearly delineate between increased participation in the medical visit and increased participation in decision making.

There is a large body of literature on engaging patients in decision making, particularly through the use of decision aids. Although decision aids are not the only means by which one can improve patient participation in decision making, there is consensus that well-designed decision aids can increase patient knowledge, improve patient-reported involvement in decision making, and decrease decisional conflict.^8,23,24 However, studies designed to evaluate decision aids are rarely set up to measure patient participation in decisions made during the medical encounter and its impact on clinically relevant outcomes.^25,26 There is also increasing attention on physician training in SDM skills, although this line of inquiry has not yet been fully integrated into the larger discussion regarding outcomes of SDM.²⁷ Given the argument that patient participation in medical decision making is a sine qua non of patient-centered care,^13,28 it is important to document the available evidence. The purpose of this systematic review is to assess the extent to which patient participation in medical decisions is associated with measured health outcomes, as reported in the peer-reviewed literature.

Methods

We conducted a systematic review of the peer-reviewed literature to evaluate empirical evidence in the context of physician–patient encounters.

Search Strategy

A primary search was run in PubMed (www.ncbi.nlm.nih.gov/pubmed) using the following strategy: Terms=(Physician-Patient Relations [MeSH] OR (Patient Participation [MeSH]) AND (decision OR decisions OR option OR options OR choice OR choices OR alternative OR alternatives); Field=Title/Abstract; Limits=English, Humans, Publication date=To 28 February 2015. The search excluded non–English language and animal studies.

PICOS Categories

The PICOS categories, put forth in the PRISMA Statement for Reporting Systematic Reviews and Meta-Analyses, are as follows:²⁹ Participants = all patients; Interventions (if applicable) = attempt to increase patient participation in decisions; Comparators (if applicable) = usual care, attention control, or no choice; Outcomes = any measured patient outcome; and Study design = randomized and non-randomized studies.

Information Sources

PubMed includes MEDLINE and life sciences journals; articles indexed in PubMed date back to 1965. Because this article focuses on the context of physician–patient encounters, we did not include additional databases. Given the lag time for some articles to be indexed in PubMed, running the search through February 2015 increases the likelihood of capturing studies published by the end of 2014.

Study Selection

Our a priori inclusion criteria were that the publications must be in the context of the physician–patient relationship, involve a measure of patient participation related to a decision addressed during the medical encounter, be empirical (i.e., not hypothetical), be peer reviewed, have outcomes related to participation as part of the study, and be published in English. Citations with no abstract were excluded only if they clearly were not about the topic, if they were not in English, or if they were non-research articles (e.g., editorials). Each author and several research assistants conducted this screening process; at least one author and 2 research assistants reviewed each study. We obtained full-text articles for all citations that met the inclusion criteria; each article was evaluated by 2 trained reviewers. We conducted a secondary search of references in those articles and obtained full-text articles for all of the nonredundant citations; each article was evaluated by 2 trained reviewers.

Data Collected and Data Collection Process

For each article that was retained, we conducted an in-depth review and extracted detailed information regarding the author, publication date, clinical context, country or countries in which patients were studied, number of patients in the study, measures of patient participation, measures of decision-making processes, and outcome measures that were tested for links to the participation measures. This more thorough review added a layer of scrutiny to the measures of patient participation; articles were dropped at this stage if their measure of patient participation was based solely on physician behavior or patient assignment to a group. Outcome measures may or may not have been the primary outcomes of the study. All authors defined the data abstraction process and categories, as well as the form used for abstraction, and refined the protocol for training research assistants. At least one research assistant and at least one author independently reviewed each article and extracted relevant data. Any disagreements or questions emanating from research assistants were handled by the first author and senior author, who also double-checked all data for accuracy.

Quality Assessment of Included Studies

Each randomized controlled trial (RCT) was independently reviewed by at least one research assistant and the first author to assess risk of bias, using a protocol that addressed methods of randomization, creation of comparable groups, maintenance of comparable groups (i.e., attrition), potential investigator bias (i.e., allocation concealment, blinding), appropriateness of measures, and appropriateness of statistical methods.³⁰ These reviewers met to compare assessments and reconcile any differences. In the few cases of reviewer disagreement or questions about the data, the first author and senior author discussed and resolved discrepancies. Although we did not conduct a parallel assessment of the nonrandomized studies, we note the possibility of publication bias across all included studies.

Data Analysis and Reporting

Data from all retained peer-reviewed articles are reported in tables delineated by type of study (i.e., RCT, cross-sectional, longitudinal, and choice).

Results

We reviewed available abstracts of all 9757 citations found through the primary search (see Figure 1). Of these, 7973 were rejected because they were not about the topic, were not empirical, were not specific to decision making, were not in the context of physician–patient decisions, or lacked both a measure of patient participation and a measure of patient outcomes (excluding knowledge), or an attempt to relate the two to each other. We conducted full-article reviews of the remaining 1784 citations; 1670 did not meet the inclusion criteria described above and were rejected, yielding 114 articles from the primary search. Our secondary search of references in those 114 articles identified 170 nonredundant citations; corresponding full-article reviews found 16 more that met the inclusion criteria. Taken together, the primary and secondary searches yielded a total of 130 articles for in-depth review, 14 of which were excluded at that stage because no actual measure of patient participation was detected (i.e., these studies measured physician behavior or patient assignment to a group). Data abstraction on the remaining 116 articles focused on clinical context, country, sample size, measures of patient participation and health outcomes, and results.

Figure 1

Search results.

The first study that met our inclusion criteria was published in 1979,³¹ the first relevant RCT was published in 1997,³² and the volume of publications grew markedly in the 21st century. Of the 116 articles, 11 were based on RCTs.^32–42 The 105 articles representing nonrandomized studies encompassed 83 cross-sectional designs, 13 longitudinal designs, and 9 choice versus no-choice designs.

Measures

Across all studies in this review, measurement of patient participation in medical decisions varied widely, with involvement operationalized by methods ranging from audio recordings³⁴ to a single-item measure of patient-reported involvement in decision making^32,36 or various patient decision-making scales.^43–47 More specifically, as illustrated in Tables 1 –4, the studies drew on 24 established measures plus a range of author-created measures of participation. A legend for the tables appears at the end of Table 4. All of the RCTs included at least one previously published participation measure, albeit different ones. In contrast, about half of the nonrandomized studies measured participation solely with measures created for those studies, often using the same moniker (e.g., “perceived involvement”) for diverse operational definitions. The established measure used most frequently was the Control Preferences Scale,⁴⁵ although it was used in only 17 of the 116 studies. Even when used, this and other established measures were often referred to by different names or analyzed with different categorical groupings.

Table 1

Randomized Controlled Trials (N = 11)

	First Author	Year	Context	N	Comparison	Process and/or Participation Results	Outcome Results
1	Bernhard³³	2012	Breast cancer (multiple countries)	694	Shared decision-making workshop vs. Standard care	Ø Involvement in decision making^z	Ø Anxiety¹ Ø Decisional conflict¹ Ø Quality of life¹ Ø Satisfaction with treatment decision¹
2	Butow³⁴	2004	Oncology (Australia)	141	Cancer consultation preparation package vs. Control booklet	↑ Challenged informationb ↑ Total questions asked by patientb Ø Achieving preferred style^c Ø Decision-making involvement^c Ø Duration of consultationsb Ø Number of interruptions by both patient and physicianb Ø Patient active behaviors^d Ø Physician encouragement of patient participationb Ø Physician provision of critical information^z Ø Physician rapport buildingb Ø Total number of words spoken by the patient and physicianb	Ø Anxiety² Ø Depression² Ø Patient satisfaction with consultation³ Ø Patient satisfaction with treatment decision³ Ø Physician satisfaction with decision-making process³
3	Cooper³⁵	2011	Primary care (US)	279	Intensive vs. Minimal patient-centered intervention for physicians and patients	1. ↑ Patient ratings of physicians’ participatory decision makingb 2. ↑ Patient involvement in care^e	1. Ø Adherence¹ Ø Blood pressure¹ 2. Ø Adherence¹ Ø Blood pressure¹
4	Davison³²	1997	Prostate cancer (Canada)	59	Self-efficacy information intervention vs. Written information package	↑ Active role in treatment decision making^c	↓ State Anxiety Score⁴ Ø Depression⁴
5	Davison³⁶ (quality concern)	1999	Prostate cancer (Canada)	100	Verbal and written specific information vs. General verbal information	↑ Active role in treatment decision making^f ↑ Agreement of physician and patient on assumed role in decision making^f	↓ Decisional conflict³ Ø Anxiety⁵
6	Hamann³⁷	2007	Psychiatry (Germany)	107	Program on drug choice decision aid and planning talk between physician and patient vs. Standard care	↑ Patient perceived involvement^x	Ø Compliance^2,6 Ø Drug switches^2,6 Ø Global functioning^2,6 Ø Illness severity^2,6 Ø Rehospitalizations^2,6
7	Hirsch³⁸	2010	Primary care (Germany)	1132	Training session in shared decision making vs. Training in alternative topics	1. ↑ Patient perception of participation^g 2. Ø Physician perception of patient participation^g	1. Ø Patient satisfaction³ 2. Ø Physician satisfaction³
8	Krones³⁹	2008	Primary care—cardiovascular disease risk (Germany)	1132	Training in shared decision making vs. Training in alternative topics	↑ Patient participation^g ↑ Shared decision-making steps reported^h	↑ Satisfaction¹ ↓ Decisional regret¹ Ø Cardiovascular disease risk¹
9	Légaré⁴⁰	2012	Primary care—treating acute respiratory infections with antibiotics (Canada)	359	Use of a shared decision-making training program vs. Usual care	↑ Perceived involvement in decision making^f	↓ Decisions to use antibiotics¹ Ø Decisional conflict¹ Ø Perception of decision quality¹ Ø Decisional regret¹ Ø Repeat consultation¹ Ø Patient quality of life 2 weeks later¹
10	Loh⁴¹ (quality concern)	2007	Primary care (Germany)	405	Physician training and patient-centered decision aid vs. Usual care	↑ Perceived physician facilitation of patient participation^e ↑ Patient participation^g Ø Perceived information-seeking behavior^e	↑ Patient satisfaction⁷ Ø Consultation time⁷ Ø Depressive symptom severity reduction⁷ Ø Patient assessment of treatment adherence⁷ Ø Physician assessment of treatment adherence⁷
11	Simon⁴²	2012	Treatment for either depression or acute low back pain (Germany)	752	Patient dialogue vs. Static patient information	1. Ø Involvement in decision making immediately after intervention^e 2. ↑ Involvement in decision making at 3-month follow-up^e	1. ↓ Decisional conflict¹ Ø Adherence¹ 2. Ø Decisional conflict¹ Ø Adherence¹

A legend for the tables appears at the end of Table 4.

Table 2

Cross-Sectional Studies (N = 83)

	First Author	Year	Context	N	Participation Measures	Outcome Measures
1	Adams⁸⁴	2001	Pulmonology—asthma (US)	128	Participatory decision-making style^j	↑ Asthma quality of life⁹ ↑ Clinical asthma status⁹ ↑ Duration of clinic visits⁹ ↓ Days affected at work and usual activities⁹ ↓ Hospitalizations⁹ ↑ Self-reported health status⁹ Ø Asthma knowledge⁹ Ø Asthma self-efficacy⁹ Ø Medication use⁹ Ø Patient satisfaction⁹
2	Andersen⁸⁵	2009	Breast cancer (US)	636	Perceived involvement in decision makingb	↑ Physical health–related quality of life¹ ↑ Mental health–related quality of life¹
3	Andersen⁸⁶	2012	Ovarian cancer (US)	219	Perceived involvement in decision makingb	Ø Emotional health¹ Ø Health-related quality of life¹ Ø Mental health¹ Ø Vitality¹
4	Ashraf⁸⁷	2013	Breast cancer reconstruction (US)	465	Role in treatment decision making^f	Informed and shared vs. paternalistic ↑ Satisfaction with decision⁶ Ø Satisfaction with aesthetics⁶ ↑ Quality of life (physical)¹⁴ Ø Quality of life (mental)¹⁴
5	Beach⁸⁸	2005	General public (US)	5514	Involvement in decisions^k	↑ Adherence for white respondents¹ ↑ Satisfaction with care¹ Ø Adherence for any other racial or ethnic group¹ Ø Receipt of optimal preventive care¹
6	Berg⁸⁹	2001	Labor and delivery (Israel)	1452	Perceived involvement in decision makingb	↑ Satisfaction with care¹
7	Berrios-Rivera⁹⁰	2006	Systemic lupus erythematosus and rheumatoid arthritis (US)	102	Physician participatory decision making^j,l	↑ Trust in physicians⁹
8	Bleicher⁹¹	2008	Oncology (US)	1259	Perceived role in treatment decisionb	↑ Treatment by mastectomy¹,*
9	Borders⁹²	2005	People in west Texas, age 65+ (US)	3135	1. Physician-driven participation in decision-making index^m 2. Patient-driven participation in decision-making indexⁿ	1. Ø Frequency of pain⁹ Ø Severity of pain⁹ 2. ↓ Frequency of pain⁹ Ø Severity of pain⁹
10	Brekke⁹³	2001	Rheumatoid arthritis and chronic noninflammatory musculoskeletal pain (Norway)	2533	Patient involvement in careb	↑ Global satisfaction with health care⁶ ↑ Satisfaction in care received⁹
11	Brody⁹⁴	1989	Primary care (US)	117	Active role perceptionb	↓ Discomfort⁴ ↑ Improvement in symptoms⁹ ↓ Level of concern with illnesses⁹ ↑ Overall improvement in medical condition⁹ ↑ Personal control over medical problems⁹ ↑ Satisfaction with physician¹³ Ø Dysfunction⁹
12	Brown⁹⁵	1994	Labor and delivery (Australia)	790	Perceived active decision makingb	↑ Satisfaction with care¹
13	Brown⁹⁶	1998	Labor and delivery (Australia)	1366	Perceived active decision makingb	↑ Satisfaction with care¹
14	Brown⁹⁷	2012	Breast cancer (international)	683	Patient involvement in decision making^f	↓ Decisional conflict⁴ ↑ Patient perceived that oncologist shared decision-making skills⁴ ↑ Satisfaction with consultation⁴ ↑ Satisfaction with decision⁴
15	Caeymaex⁹⁸	2013	Neonatal intensive care unit (France)	78	Parent involvement in decision makingb	↓ Grief⁶ Ø Global Assessment of Functioning scale⁶ Ø Anxiety⁶ Ø Depression⁶
16	Clucas⁹⁹	2011	HIV (UK)	217	Adapted OPTION for patient useⁱ	Reporting correlations of ≥0.3 (see article for other variables) ↑ Patient and doctor agreement in decision⁹ ↑ Patient played a part in the decision to switch or stop⁹ ↑ Satisfaction with monitoring of patient’s condition⁹ ↑ Satisfaction with new medications⁹ ↑ Satisfaction with the way the switch was discussed⁹
17	Cooper- Patrick¹⁰⁰	1999	Primary care (US)	2481	Participatory decision making^j	↑ Satisfaction with physician interpersonal manner¹⁰ ↑ Satisfaction with physician technical skills¹⁰
18	Davison¹⁰¹	2003	Prostate cancer (Canada)	67	Assumed role in medical decision making^f	Ø Decisional regret⁵ Ø Quality of life²
19	Ernst¹⁰²	2010	Hematological patients (Germany)	117	Patient perceptions of control over the decision-making process^f	↑ Positive evaluation of medical experience⁵ Ø Confidence with decision⁵
20	Flierler¹⁰³	2013	Surgical anesthesia (Switzerland)	197	Patient involvement in decision making^f,y	↑ Satisfaction¹
21	Fondacaro¹⁰⁴	2005	General population (US)	153	Health care justice inventory-participation subscaleb	↑ Satisfaction with provider¹
22	Franciosi¹⁰⁵	2004	Diabetes (Italy)	2515	Patient involvement in decision makingb	↑ Satisfaction with physicians’ communication skills¹
23	Gandhi¹⁰⁶	2013	Pediatric asthma (US)	160	Parent perception of shared decision making^h	↑ Asthma-specific health-related quality of life (child) ↑ Asthma control (parent)
24	Garcia- Gonzalez¹⁰⁷	2009	Rheumatology (Mexico)	200	1. Doctor facilitation of involvement^e 2. Level of information exchange^e 3. Patient participation in decision making^e	1. ↑ Satisfaction with visit (Medical Outcomes Study [MOS])⁹ ↑ Trust in physicians⁹ 2. ↑ Satisfaction with visit (MOS)⁹ Ø Trust in physicians⁹ 3. Ø Satisfaction with visit (MOS)⁹ Ø Trust in physicians⁹
25	Gattellari¹⁰⁸	2001	Oncology (Australia)	233	Perceived involvement in decision makingb	↑ Satisfaction with physician communication if shared decision making¹ Ø Anxiety¹
26	Glass¹⁰⁹	2012	General population (US)	488	Patient perception of shared decision making^h	↑ Patient satisfaction with decision¹
27	Goldring¹¹⁰	2002	Inflammatory bowel disease (US)	218	Shared decision makingb	↑ Physician recommendation strength⁹ ↑ Quality of life⁹ Ø Disease threat⁹ Ø Disease-specific quality of life⁹
28	Golin¹¹¹	2002	Primary care (US)	198	Facilitation of patient involvement^o	↑ Satisfaction with visit for women¹ Ø Satisfaction with visit for men¹
29	Graham¹¹²	1999	Labor and delivery (Scotland)	166	Perceived involvement in decision of cesareanb	↑ Satisfaction with cesarean⁶
30	Gray¹¹³	2005	Recipients of medication for schizophrenia (UK)	69	Perceived involvement in decision makingb	↑ Satisfaction with treatment¹¹
31	Grosset¹¹⁴	2005	Neurology clinic (Scotland)	107	Perceived involvement in decision making^p	↑ Satisfaction with consultation⁹ Ø Activities of daily living⁹ Ø Depression⁹ Ø Mini-Mental State Exam (MMSE)⁹ Ø Motor scores⁹ Ø Quality of life⁹
32	Hamalainen¹¹⁵	2003	Home respiratory care users (Finland)	3153	Perceived involvement in decision makingb	↑ Perception of importance of shared decision making⁶ ↑ Satisfaction with care⁶
33	Harvey¹¹⁶	1999	Veterans (US)	266	Perceived decision-making opportunity^q	↑ Satisfaction with medical care⁵
34	Heisler¹¹⁷	2002	Veterans (US)	1314	Provider participatory decision-making style^j	↑ Diabetes self-management¹
35	Heisler¹¹⁸	2003	Veterans and primary care (US)	127	1. Perceived involvement in decision makingb 2. Patient-centeredness^r	1. Ø Agreement on treatment strategies¹ 2. Ø Agreement on treatment strategies¹
36	Hill¹¹⁹	2013	Obstetrics and gynecology (US)	55	Perceived autonomy support^r	↑ Satisfaction with rapport⁹
37	Holzel¹²⁰	2013	Primary care (Germany)	1913	Patient involvement in decision making^h	↑ Satisfaction with physician¹⁶ ↓ Decisional conflict¹⁶
38	Isaacs¹²¹	2013	Emergency medicine (US)	111	Patient involvement in decision makingb	Ø Satisfaction with pain medication¹ Ø Pain reduction¹
39	Ishikawa¹²²	2006	Rheumatology (Japan)	115	Perceived participation in treatmentb	↑ Feeling of being understood⁹
40	Jahkola¹²³	1998	Oncology (Finland)	146	Perceived involvement in decision makingb	Ø Satisfaction (SSI)⁰
41	Janssen¹²⁴	2009	Trauma patients (Germany)	90	Shared decision-making behaviors of the physician^h	↑ Self-rated health¹
42	Janz¹²⁵	2004	Oncology (US)	101	Perceived involvement in decision making^f	↑ Satisfaction with medical decision⁹
43	Kahn¹²⁶	2007	Oncology (US)	881	Perceived involvement in decision makingb	↑ Continue use of tamoxifen¹
44	Katz⁴⁸	2005	Oncology (US)	1844	Patient perception of involvement in surgical decision making^f	White women: ↑ Mastectomy¹²,**
						All other women:Ø Mastectomy¹²
45	Keating¹²⁷	2002a	Primary care (US)	2052	Perceived involvement in decision making^t	↑ Physician trust⁶ Ø Consider changing physicians⁶ Ø Satisfaction with physician⁶
46	Keating¹²⁸	2002b	Oncology (US)	1081	Actual role in decision makingb	Ø Satisfaction with treatment choice¹
47	Keating¹²⁹	2004	Specialty care (US)	417	Perceived involvement in decision making^t	↑ Trust in consultation¹
48	Kim¹³⁰	2001	Family planning (Indonesia)	1203	Active communication behaviorsb	Ø Satisfaction with participation¹
49	Kim¹³¹	2008	Oncology (Korea)	432	Perceived involvement in decision makingb	↓ Beck Depression Inventory (BDI)¹ ↑ Choosing same treatment again¹ ↑ Health-related quality of life¹ ↑ McGill quality of life¹ ↑ Treatment satisfaction¹
50	Kjeken¹³²	2006	Rheumatoid arthritis and ankylosing spondylitis (Norway)	1193	Involvement in medical decision makingb	↑ Satisfaction with care²
51	Koudriavtseva¹³³	2012	Multiple sclerosis (Italy)	97	Perceived involvement in decision makingb	↑ Perceived utility of treatment¹
52	Kremer⁴⁹	2007	HIV (US)	79	Perceived involvement in decision making^f	Ø Decisional conflict¹ ↓ Likelihood of taking antiretroviral therapy¹
53	Lantz⁵⁰	2005	Oncology (US)	1633	Perceived involvement in decision makingb	↑ Rate of mastectomy¹,↑ Satisfaction with type of surgical treatment¹ ↑ Satisfaction with decision process¹ ↑ Decisional regret*¹
54	Lerman⁴⁶	1990	Primary care (US)	143	1. Doctor facilitation in decision making^e 2. Level of information exchange^e 3. Patient decision-making scale^e	1. ↑ Expected improvement in functional capacity⁹ ↑ Satisfaction with art of care⁹ ↑ Satisfaction with technical care⁹ ↑ Self-reported increments in patients’ levels of understanding, reassurance, and perceived control⁹ 2. ↑ Expected improvement in functional capacity⁹ ↑ Self-reported increments in patients’ levels of understanding, reassurance, and perceived control⁹ Ø Satisfaction with art of care⁹ Ø Satisfaction with technical care⁹ 3. ↑ Satisfaction with technical care⁹ Ø Illness attitudes⁹ Ø Predicted functional capacity⁹ Ø Satisfaction with art of care⁹
55	Leung¹³⁴	2009	Rheumatology (Hong Kong)	105	Perceived involvement in decision makingb	↑ Satisfaction with care² Ø Knowledge² Ø Mental quality of life² Ø Pain² Ø Physical quality of life ² Ø Skin condition²
56	Lopez¹³⁵	2014	Breast cancer (US)	745	Perceived involvement in decision making^f	↑ Satisfaction with decision making¹ Ø Treatment regret¹
57	Maly¹³⁶	2008	Oncology (US)	257	Participatory decision-making style^m	↑ Breast conservation surgery¹³,**↑ Quality of life¹³
58	Mancini¹³⁷	2012	Breast cancer clinical trials (France)	93	Patient perceived involvement in the decision-making processb	↓ Decisional regret⁹
59	Martin (study 2)¹³⁸	2001	Members of an alumni association (US)	338	Facilitation of patient involvement^o	↑ Adherence¹ ↑ General health¹ ↑ Satisfaction with care¹
	Martin (study 3)	2001	School district faculty and staff (US)	333	Facilitation of patient involvement^o	↑ Adherence¹ ↑ General health¹ ↑ Satisfaction with care¹
	Martin (study 4)	2001	Undergraduate students (US)	44	Facilitation of patient involvement^o	↑ Satisfaction with care¹ Ø Adherence¹ Ø General health¹
60	Nekhlyudov¹³⁹	2008	Breast cancer (US)	96	Informed decision makingb	↓ Decisional conflict⁵ Ø Intention for screening⁵ Ø Knowledge⁵ Ø Satisfaction with information provided⁵
61	Ngo-Metzger¹⁴⁰	2004	General white and Asian population (US)	3726	Involved in decisions as much as wanted^k	↑ Satisfaction with care¹ ↑ Trust¹
62	Noh¹⁴¹	2008	Oncology (Korea)	2085	Perceived involvement in decision makingb	↑ Likeliness to choose same type of treatment again¹ ↑ Quality of life¹ ↑ Social functioning¹ ↑ Treatment satisfaction¹
63	Ommen¹⁴²	2009	General internal and surgical inpatients (Germany)	4192	Shared decision making^s	↑ Satisfaction with hospital care⁶ ↑ Trust in physicians⁶
64	Ommen¹⁴³	2011	Hospital patients (Germany)	2197	Shared decision making^s	↑ Emotional support⁹ ↑ Informational support⁹ ↑ Trust in physician⁹ Ø Tendency to excuse⁹
65	Orsino¹⁴⁴	2003	End-stage renal disease (Canada)	197	Independence in decision makingb	↑ Decision self-efficacy²
66	Palmer⁵¹	2013	African-American prostate cancer treatment (US)	181	Patient perception of involvement in decision making^f	↑ Choice of treatment with fewer side effects¹¹ ↓ Prostate cancer–specific quality of life⁵
67	Phillips¹⁴⁵	1998	Mammography screening (US)	2026	Perceived involvement in decision makingb	↑ Adherence to screening guidelines¹
68	Phipps¹⁴⁶	2008	Oncology (US)	26	Perceived involvement in decision making^c	Ø Depression^5,6,9
69	Ratsep¹⁴⁷	2014	Spinal surgery (Estonia)	147	Perceived involvement in decision making^f	Ø Satisfaction with results of surgery¹
70	Saba¹⁴⁸	2006	Primary care (US)	18	Shared decision-making behaviorb	Ø Positive subjective experience⁰
71	Sawka¹⁴⁹	2012	Thyroid cancer (Canada)	44	Patient-reported involvement in final treatment decisionb	↓ Decisional regret⁵
72	Schneider¹⁵⁰	2004	HIV (US)	554	Perceived involvement in decision making^j	↑ Adherence⁹
73	Schulman³¹	1979	Hypertension (US)	99	Active patient orientationb	↑ Adherence to medications⁶ ↓ Blood pressure⁶ ↑ Comprehension of treatment⁶ ↑ Confidence in clinic staff⁶ ↑ Confidence in prescribed treatment⁶ ↑ Efficacy of self-care activities⁶ ↑ Needs met⁶ ↑ Perceived ratio of benefits to costs⁶ Ø Adherence to behavioral change⁶ Ø Side effects⁶
74	Seguin¹⁵¹	1989	Postpartum women (Canada)	938	Perceived involvement in decision makingb	↑ Satisfaction with explanations provided¹ ↑ Satisfaction with participation in decision making¹
75	Singh⁶⁴	2010	Oncology adjuvant therapy (Australia)	63	Patient perception of shared decision makingb	Ø Achievement of involvement preferences¹ Ø Anxiety¹ Ø Patient satisfaction with consultation⁹
76	Stack¹⁵²	2005	Nationally representative sample of patients who began dialysis therapy in 1996–1997 (US)	2418	Perceived involvement in decision makingb	↑ Survival¹ ↑ Transplantation¹
77	Suzuki¹⁵³	2012	Oncology (US)	52	Perceived involvement in decision making^e	Ø Quality of life¹ Ø Uncertainty¹
78	Swanson¹⁵⁴	2007	Primary care—depression (US)	1481	Patient perceived shared decision making for past 6 months^m,u	↑ Satisfaction with overall health care¹
79	Tan¹⁵⁵	2010	Psoriasis (Canada)	248	Patient perception of physician involvement in decisions^f,v	↑ Decisional confidence^6,9 Ø Decisional regret⁰
80	Turner¹⁵⁶	1996	Oncology (UK)	165	1. Perceived involvement in decision makingb 2. Satisfaction with decision-making processb	1. Ø Treatment response⁵ 2. Ø Treatment response⁵
81	Vogel¹⁵⁷	2009	Oncology (Germany)	135	Perceived involvement in decision making^f	Ø Satisfaction with decision making¹ Ø Depression¹ Ø Quality of life¹
82	Wills¹⁵⁸	2003	Primary care—depression (US)	97	Physician participatory decision making^w	↑ Satisfaction with decision¹
83	Wroe¹⁵⁹	2002	Asthma and other respiratory conditions (New Zealand)	173	Perceived involvement in decision makingb	Ø Adherence¹

A legend for the tables appears at the end of Table 4.

Table 3

Longitudinal Studies (N = 13)

	First Author	Year	Context	N	Participation Measures	Outcome Measures
1	Clever¹⁶⁰	2006	Primary care— depression (US)	1706	Perceived involvement in decision makingⁿ	↑ Probability of depression remission⁶ ↑ Receipt of guideline-concordant care⁶
2	Davison¹⁶¹	2007	Urology (Canada)	130	Perceived involvement in decision making^f	Ø Decisional regret¹
3	Deinzer¹⁶²	2009	Primary care— hypertension (Germany)	86	Observer rating of involvement in decision making ^x	↑ Patient ratings of doctor–patient relationship^2,7,9 Ø Blood pressure control^2,7,9 Ø Health-related quality of life^2,7,9 Ø Knowledge about hypertensive issues at 1 year^2,7,9
4	Hack¹⁶³	2006	Oncology (Canada)	205	Perceived involvement in decision making^f	↓ Fatigue⁶ ↑ Quality of life⁶
5	King¹⁶⁴	2000	Oncology (Australia)	291	Perceived involvement in decision makingb	Ø Arm symptoms¹² Ø Breast/chest symptoms¹² Ø Body image¹² Ø Cognitive functioning¹² Ø Coping strategies¹² Ø Emotional functioning¹² Ø Fatigue¹² Ø Fear of recurrence¹² Ø Global quality of life¹² Ø Importance of breasts¹² Ø Menopausal symptoms¹² Ø Nausea and vomiting¹² Ø Pain¹² Ø Physical functioning¹² Ø Relationship with partner¹² Ø Role functioning¹² Ø Sexual functioning¹² Ø Social functioning¹² Ø Usual activities¹²
6	Loh¹⁶⁵	2007	Primary care— depression (Germany)	207	Perceived involvement in decision makingb	↑ Clinical outcome⁹ ↑ Treatment adherence (patient rating)⁹ ↑ Treatment adherence (physician rating)⁹ Ø Depression severity⁹
7	Moyer¹⁶⁶	1998	Oncology (US)	93	Perceived participation in decision makingb	↑ Satisfaction with attention to medical care, at 13 months¹⁴ Ø Satisfaction with attention to medical care, at 3 months¹⁴ Ø Concern about cancer recurrence, at 3 and 13 months¹⁴ Ø Psychological assessment, at 3 and 13 months¹⁴
8	Nam¹⁶⁷	2014	Hand surgery	85	Perceived participation in decision making^f	Ø Symptom and functional status at 6 months⁵
9	Parchman¹⁶⁸	2010	Primary care— diabetes (US)	141	Patient’s perception of participatory decision making^m	Ø Medication adherence¹
10	Street¹⁶⁹	1997	Oncology (US)	51	1. Decisional responsibilityb 2. Perceived choiceb	1. Ø Health-related quality of life⁹ (T0)Ø Health-related quality of life⁹ (T6–12)2. Ø Health-related quality of life⁹ (T0)Ø Health-related quality of life⁹ (T6–12)
11	Tusquets¹⁷⁰	2009	Oncology (Spain)	613	Patient involvementb	↑ Eastern Cooperative Oncology Group (ECOG) performance status⁶ Ø Occurrence of number of adverse events⁶ Ø Satisfaction with treatment or aspects of treatments¹
12	Williams¹⁷¹	1998	Diabetes (US)	128	Patient perception of degree of autonomy supportiveness^d	↓ Hemoglobin A1C level¹
13	Xu⁵²	2004	People in west Texas, age 65+ (US)	2167	1. Physician participatory decision-making style^j 2. Patient participationⁿ	1. ↑ Satisfaction with physicians¹ 2. ↓ Satisfaction of physicians¹

A legend for the tables appears at the end of Table 4.

Table 4

Nonrandomized Studies With an Opportunity for Choice (N = 9)

	First Author	Year	Context	Study Design	N	Participation Measures	Outcome Measures
1	Bedi¹⁷² (see also Chilvers¹⁷³)	2000	Primary care—depression (UK)	Quasi-randomized trial	323	Chose treatment	Ø Beck Depression Inventory⁰ Ø Satisfaction⁰ Ø SF-36 scores⁰
2	Fallowfield¹⁷⁴	1990	Oncology (UK)	Longitudinal	248	Perceived opportunity for choosing treatment^b	Ø Anxiety¹ Ø Depression¹
3	Fallowfield¹⁷⁵	1994	Oncology (UK)	Longitudinal	216	Perceived opportunity for choosing treatment^b	Ø Anxiety¹ Ø Depression¹
4	Jansen¹⁷⁶	2004	Oncology (Netherlands)	Cross-sectional	448	Perceived opportunity for choosing treatment^b	Ø Experienced chemotherapy burden⁵ Ø Quality of life⁴ Ø Satisfaction with treatment⁵
5	Lam¹⁷⁷	2003	Oncology (Hong Kong)	Cross-sectional	154	Perceived opportunity for choosing treatment^b	↑ Level of confidence with treatment decision¹ ↑ Satisfaction with medical consultation¹
6	Lopchinsky¹⁷⁸	1992	Oncology (US)	Cross-sectional	22	Perceived opportunity for choosing treatment^b	↑ Confidence in ability of treatment to control disease⁰ Ø Attractiveness⁰ Ø Femininity⁰ Ø Self-image⁰ Ø Sexual activity⁰
7	Mandelblatt¹⁷⁹	2003	Oncology (US)	Cross-sectional	1812	Perceived opportunity for choosing treatment^b	↓ Bodily pain¹ ↑ Mental health scale scores¹ ↑ Satisfaction with care¹
8	Margalith¹⁸⁰	1997	Urology (Israel)	Nonrandomized experimental design	80	Perceived participation in decision making^b	Ø Anxiety²
9	Polsky¹⁸¹	2002	Geriatric oncology (US)	Longitudinal	683	Perceived opportunity for choosing treatment^b	↓ One-year medical cost¹ ↑ Perceived health status¹ Ø Quality of life¹

Legend for Tables

Authors give no value judgment to lumpectomy vs. mastectomy. ** Authors consider breast conservation surgery (BCS) is better than mastectomy.

Participation Measures

Information and Patient Preferences (Cassileth et al., 1980).¹⁸² ^b Authors created their own participation measure. ^c Decision Making During Illness (Degner and Sloan, 1992).¹⁸³ ^d Krantz Health Opinion Survey (Krantz et al., 1980).¹⁸⁴ ^e Perceived Involvement in Care Scale (Lerman et al., 1990).⁴⁶ ^f Control Preferences Scale (Degner et al., 1997).⁴⁵ ^g Patient Participation Scale (Man-Son-Hing et al., 1999).¹⁸⁵ ^h SDM-Q-9 Scale (Kriston et al., 2010).¹⁸⁶ ⁱ OPTION Scale (Elwyn et al., 2003).⁶¹ ^j Participatory Decision-Making (Kaplan et al., 1996).¹⁸⁷ ^k Commonwealth Fund Health Care Quality Survey (2001).¹⁸⁸ ^l Hall’s Trust in Physician Scale (Hall et al., 2001).¹⁸⁹ ^m Medical Outcomes Study (Kaplan et al., 1989).⁵ ⁿ Quality Improvement for Depression Survey (Rost et al., 2001).¹⁹⁰ ^o Facilitation of Patient Involvement in Care Scale (Martin et al., 2001).¹⁹¹ ^p Adapted from Patient Perceptions of Consultation Tasks (Makoul et al., 1995).⁵⁸ ^q Decision-Making Preference Scale (Ende et al., 1989).¹⁹² ^r Health Care Climate Scale (Williams et al., 1996).¹⁹³ ^s Cologne Patient Questionnaire (Pfaff et al., 2003).¹⁹⁴ ^t Picker-Commonwealth Survey of Patient-Centered Ambulatory Care.¹⁹⁵ ^u Adopted from a study by Greenfield et al. (1985).³ ^v Workbook for Assessing Patients’ and Practitioners’ Decision Making Needs (Jacobsen and O’Connor, 2006).¹⁹⁶ ^w Adapted from Strull et al. (1984).¹⁹⁷ ^x COMRADE Scale (Edwards et al., 2003).¹⁹⁸ ^y MAPPIN’SDM.⁷⁹

Statistical Analysis of Outcomes

Not reported. ¹ Regression analysis. ² t-test. ³ Mann–Whitney test. ⁴ MANOVA test. ⁵ ANOVA test. ⁶ Chi-square test. ⁷ ANCOVA test. ⁸ Wilcoxon rank-sum test. ⁹ Correlation analysis. ¹⁰ Generalized estimating equations (GEE). ¹¹ Fischer’s exact test. ¹² Wald test. ¹³ Confirmatory factor analysis ¹⁴ Tukey’s range test ¹⁵ Kruskall–Wallis H test. ¹⁶ Structural equation modeling.

Relationship Between Participation and Outcomes

↑

Outcome measure increased. Ø No effect. ↓ Outcome measure decreased. Adverse effects are italicized (e.g., ↑ anxiety, ↓ satisfaction).

Similarly, outcome measures varied widely. In general, 4 types of outcomes were reported across these studies: psychosocial (e.g., satisfaction, anxiety, decision regret, decisional conflict, and quality of life), behavioral (e.g., prescription filling and adherence), practice-related (e.g., physician satisfaction and encounter length), and biomedical (e.g., clinical asthma status). As can be surmised from Tables 1 –4, psychosocial constructs constitute the vast majority of the outcomes.

Randomized Controlled Trials

As shown in Table 1, most of the 11 RCTs were conducted in Germany (n = 5) or Canada (n = 3). In terms of clinical context, most of these studies focused on primary care. All of the RCTs involved an educational intervention, often physician training in SDM. Patient participation increased in 10 (91%) of the 11 RCT intervention groups, and at least one positive outcome was linked to increased participation in 5 (50%) of these 10 RCTs.^{32,36,39–41} At the level of individual outcome measures across all 11 RCTs, this represents only 6 (14%) of the 42 outcomes hypothesized to be positively influenced by patient participation in decisions. It is important to note that one additional positive outcome was reported, yet it was not related to a significant increase in the corresponding participation measure.⁴² There was no evidence that participation was linked to improvement in the remaining 35 outcomes measured. In terms of outcome categories, 10 of the RCTs included at least one psychosocial outcome, 4 included a behavioral outcome, 3 included practice outcomes, and 3 included a biomedical outcome.

A quality assessment found that most of the studies had acceptable research designs and statistical analyses, and responsibly drawn conclusions. Although few RCTs reported on the status of patient, provider, or investigator blinding, the nature of the interventions (e.g., physician training and decision-aid use) often did not allow for complete blinding. Many of the RCTs did not achieve the expected results, but noted reasonable limitations to the study methodology and provided credible explanations. However, 2 were deemed of poor quality due to large and unaddressed potential for investigator bias³⁶ and/or moderate attrition.^36,41 These studies are demarcated by italics and the words “quality concern” in the second column of Table 1. A supplementary summary of each RCT is available from the authors.

Nonrandomized Studies

Although nonrandomized studies do not carry the rigor of RCTs, given the relatively small number of RCTs in this review, it is instructive to summarize the cross-sectional, longitudinal, and choice versus no-choice studies (see Tables 2 –4 for citations and basic information). Across all of the 105 nonrandomized studies, 78 (74%) indicated an association between patient participation and at least one positive outcome, generally a measure of satisfaction. Results were mixed in 28 (36%) of the 78 studies within this subset (i.e., patient participation was associated with both positive and null or negative effects). A negative relationship between patient participation and measured outcomes was detected in 5 (5%) of the nonrandomized studies.^48–52

More specifically, among the 83 cross-sectional studies abstracted in Table 2, 66 (80%) found that patient participation in decision making was positively associated with at least one of the outcomes measured, ranging from biological measures to adherence, trust, satisfaction with physicians, satisfaction with care, and/or satisfaction with the decision itself (i.e., reduced decisional regret). At the level of individual variables, 129 (61%) of the 212 outcome variables measured in the cross-sectional studies were positively associated with participation. The proportion of positive results was lower in the other types of studies: 8 (62%) of the 13 longitudinal studies summarized in Table 3 reported at least one positive relationship between increased patient participation in decisions and improved outcomes, yet positive associations were found for only 12 (25%) of the 48 outcomes measured. Finally, 4 (44%) of the 9 choice versus no-choice studies outlined in Table 4 found at least one positive relationship; this corresponded to 8 (33%) of the 24 outcomes hypothesized to be associated with participation.

Summary

Nearly half of the RCTs and most of the nonrandomized studies reported an association between patient participation and at least one positive outcome. However, at the level of individual variables, there were slightly more null outcome tests than positive outcome tests. The pattern of null versus positive results varied by study type: Whereas approximately three-quarters of outcome tests for RCTs, longitudinal studies, and choice studies were null, the cross-sectional studies offer a different impression because more than half of the outcome tests in those investigations were positive.

Discussion

Our review of patient participation in decision making during medical encounters focused on peer-reviewed articles published in English through early 2015, covering a timespan that includes the advent of the Internet and concomitant increase in patients’ access to information. Moreover, this article offers both an update and an organizing framework for investigations in the field, complementing recent reviews of SDM training for health professionals²⁷ as well as SDM outcomes for patients.⁵³ Although our study is limited to articles published in English, the systematic approach and comprehensive nature of this work could be replicated in other languages.

Our main objective was to assess the extent to which patient participation in decision making within medical encounters is associated with measured patient outcomes. Despite widespread belief that participation in health decisions is associated with better health-related outcomes for patients, we found relatively few studies that measured both participation and outcomes, and attempted to relate the two. Indeed, only 11 RCTs assessed this connection, and they provide inconsistent evidence for improved outcomes. More specifically, only half of the RCTs with increased patient participation in decisions reported a positive impact on outcomes. All but one of the measured outcomes that improved were psychosocial in nature (i.e., satisfaction, anxiety, decision regret, and decisional conflict), yet they were outnumbered by null results for similar outcomes in the other RCTs. Interestingly, no improvement in any of the psychosocial outcomes was detected in the one RCT that found improvement in a behavioral outcome (i.e., reduced use of antibiotics for acute respiratory infections).⁴⁰

Although nonrandomized studies are considered less rigorous than RCTs, we included them to provide a more complete picture of research in this area. The nonrandomized studies—particularly cross-sectional investigations—suggest a positive effect. A close look at the tables indicates that satisfaction was a predominant outcome measure in the cross-sectional studies. The proportion of satisfaction measures to all outcomes measured was 1.6, 1.8, and 3.1 times higher in cross-sectional studies than in RCTs, choice designs, and longitudinal studies, respectively. Moreover, the proportion of positive results for satisfaction measures was higher as well: 76% for cross-sectional studies, 50% for choice studies, and 40% for longitudinal studies, compared to 25% for RCTs. Taken together, the relationship between participation and outcomes is far from clear. Our review suggests that the lack of clarity is due, in large part, to inconsistent measurement.

Measurement Considerations

Several aspects of measurement are important to address, including choice of the measures themselves. The review revealed wide variation in the conceptual and operational definition of both participation in medical decisions and related outcomes, making it difficult to make direct comparisons across studies. For example, observer ratings may differ from patient reports; different self-report scales may tap different underlying constructs. Thus, 2 studies that report effects of patient participation may actually be measuring different things.

Participation Measures

The choice and use of participation measures are fundamental and critically important to this line of research.⁵⁴ However, in terms of gauging participation, we found considerable heterogeneity of measures used across studies, amplified by a plethora of author-created measures. In addition, there was incongruity among studies using the same measure (i.e., how the measure was applied). For instance, although the Control Preferences Scale⁴⁵ was used more frequently than any other established measure, the groupings of response categories varied (e.g., shared or not-shared in some; and active, shared, or passive in others). The apparent lack of a standard measure may have prompted many authors to develop their own, nonvalidated measures of patient participation.

Outcome Measures

The diversity of measures and metrics across outcome variables makes it difficult to form a coherent picture regarding actual benefit of patient participation. Many studies included patient satisfaction as a key variable. However, measures of satisfaction were inconsistent and crossed several domains, including satisfaction with interpersonal communication, quality of care, physicians, or other facets of the interaction. Even if consistent measures were used, patient satisfaction is a highly skewed and problematic construct with questionable value as a primary outcome.^55–57 Anxiety, decisional conflict, and quality of life are among the other psychosocial outcomes measured, again with variable approaches to operationalization. Measurement of behavioral, biomedical, or practice-based outcomes was relatively rare.

Types of Measurement

Although there are myriad studies of patient–provider communication in the literature, this review highlighted a dearth of studies that analyze actual communication related to decision making, which may differ markedly from self-reported communication.^58,59 Several systems have been developed to measure SDM by coding audio recordings, video recordings, or transcripts,^60–64 but only a few look beyond provider behavior and explicitly document patient or companion involvement in decision making.^58,64–70 For example, OPTION, which is considered an efficient and sensitive coding system for research purposes, focuses primarily on physician behavior (e.g., “The clinician elicits the patient’s preferred level of involvement in decision making”).⁶¹ There is now a dyadic version that captures both physician and patient input into decision making.⁷⁰ Measurement attuned to the co-production of decisions holds considerable promise: Because patient–provider communication is a bidirectional, interactive process, measuring the actions of only one party cannot provide an accurate assessment of decision-making quality.⁵⁸

This point takes on added importance in light of the fact that physician training was a major component of interventions designed to increase patient participation in several of the RCTs. Although there is no standard SDM curriculum,⁷¹ clinician training combined with patient training or coaching may be a promising route for encouraging patient participation in decisions.^27,72 Future studies designed to test this proposition would likely benefit from attention to the measurement and co-production issues highlighted above.

Choosing Relevant Outcomes

Popular measures such as satisfaction are unlikely to suffice as primary outcomes. If SDM is appropriate when doctors and patients consider tests, treatments, and/or procedures that may have similar health outcomes (i.e., equipoise), improved physical health is also likely to be inadequate. What, then, are the right outcomes to measure? Comparative effectiveness research provides one useful lens for this examination, given its intent to inform health care decisions on a population scale by comparing the effectiveness, harms, and benefits of each option. In the context of SDM research, such comparisons could be explicitly applied to options selected in medical encounters. Studies have shown that patients choose less invasive procedures or less aggressive care when engaged in a patient-centered process of decision making.²⁴ For instance, cancer patients receiving early palliative care—with attention to assessing patient preferences and evaluating goals of care—have been shown to opt for less aggressive (and less expensive) treatment, but live longer and have higher quality of life.⁷³ Although research into understanding the relationship between SDM and costs is in its infancy, more conservative care may mean lower costs, and may yield fewer side effects when compared to more intensive medical interventions. A recent review of studies using the Patient Activation Measure⁷⁴ found that higher levels of patient activation were associated with lower costs.⁷⁵

Moreover, studies demonstrating equivalent long-term survival have not thoroughly investigated possible differences in quality of life or other outcomes that matter to patients. Focusing on patient-centered outcomes would likely enhance patient and provider ability to choose among what may be thought of as comparable options from a traditional medical perspective. Explicitly considering outcomes that matter to patients is also consistent with current thinking regarding value in health care. Indeed, the outcomes hierarchy advocated by Porter and colleagues provides a logical approach, defining Tier 1 outcomes as health status achieved or retained, Tier 2 as the process of recovery, and Tier 3 as sustainability of health.⁷⁶ It may well be that, for most patients, recovery and sustainability are at least as important as health status.⁷⁷ Accordingly, research on SDM and, ultimately, patient-centered care will benefit from consistent application of patient-reported outcomes relevant to decision making, such as decisional regret, quality of life and functional status,⁷⁸ and behavioral outcomes, such as rates of adherence to a treatment plan.⁵⁴ The relatively recent establishment of the Patient Centered Outcomes Research Institute (PCORI) in the United States and International Consortium for Health Outcomes Measurement (ICHOM) should greatly enhance the ability of the public and researchers to examine outcomes in a more meaningful and systematic manner.

Limitations

This review may be limited in the following ways. First, like any systematic review, our search strategy may not have captured all relevant studies. Because this review focuses on the context of physician–patient encounters, our search was conducted through PubMed, which includes MEDLINE. We did not search additional databases: CINAHL focuses on allied health and would not include novel citations specific to the physician–patient relationship; other databases, such as Embase, are specific to health science rather than clinical context. Second, excluding non–English language articles and studies about patient encounters with nonphysician providers (e.g., nurses and pharmacists) may have resulted in a loss of information about patient participation across practice settings and in other cultures. Third, because our review focused on the impact of patient participation, we did not include articles that operationalized participation only in terms of physician behavior or patient assignment to a group. In other words, we required a patient-oriented measure of participation, which can also be considered a strength of the study.⁷⁹ Fourth, as we were looking specifically for the relationship between patient participation and health outcomes, studies that might have collected both types of information—but not reported on their relationship—would not have been included. We did not contact authors of studies or conduct reanalysis of data that may have existed but not been reported. Fifth, we did not conduct a quality appraisal of the nonrandomized studies and acknowledge that the greater proportion of positive results reported may be a sign of publication bias. Finally, many of the decisions that appear in this review are single-event decisions (e.g., cancer treatment choice); decisions that may be repeated or revisited have gained increasing attention and will require further study.^80–82

Conclusion

There are compelling moral arguments for patient participation in medical decisions as well as many examples of excellent interventions for helping patients, families, and clinicians through the decision-making process.^22,83 Yet our review of studies published in English language, peer-reviewed journals reveals uneven application of methods and mixed results in terms of empirical support for the value of patient participation in medical decisions. Given the numerous clinical contexts in which SDM is being studied, it will be difficult to derive meaning from the research unless consistent measures of participation and outcomes are used whenever possible. A more coherent evidence base—with greater attention to outcomes that matter to patients and providers—may be a rate-limiting step to thoroughly integrating patient participation in medical decisions into everyday clinical practice.

Footnotes

Acknowledgements

We thank Dr. Neeraj Arora for his encouragement and thoughtful contributions to this work; thank Christiana Kachoulas, Jonathan Lis, and Jennifer Webb for their diligent efforts and assistance with article abstraction; and thank Andrea Russell for her assistance with quality ratings. Earlier versions of this work were presented at the International Conference on Communication in Healthcare (Oslo, 2008), the Society of General Internal Medicine Annual Meeting (Phoenix, 2011), and the International Shared Decision Making Conference (Maastrict, 2011); we are grateful for helpful feedback received at these meetings as well as from the reviewers.

Presentations: Earlier versions of this work were presented at the International Conference on Communication in Healthcare (Oslo, 2008), the Society of General Internal Medicine Annual Meeting (Phoenix, 2011), and the International Shared Decision Making Conference (Maastrict, 2011). We thank our colleagues for helpful feedback.

Financial support: No external funding was used for this study.

The authors have no conflicts to report.

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