Experiences of Using Patient Decision Aids for Decisions About Cancer Treatment: A Meta-Aggregation of Qualitative Studies

Abstract

Background:

Inconsistent results have been found regarding the effects of patient decision aids (PtDAs) in supporting patients’ decision making for cancer treatment.

Objective:

This qualitative meta-aggregation presents the experiences of using PtDAs, as perceived by adult patients with cancer, and highlights the components they perceived as important.

Methods:

We used the three-phase process for meta-aggregation suggested by JBI to identify published studies with qualitative evidence from CINAHL, Ovid-MEDLINE, APA PsycINFO, and EMBASE databases. The selected studies involved adults with various cancer diagnoses. The phenomenon of interest and the context for this review were people’s experiences of using PtDAs for decisions about first-line cancer treatment.

Results:

A total of 16 studies were included. The authors achieved consensus on five synthesized findings about PtDAs: (1) improved understanding of treatment options and patient values and preferences; (2) served as platforms for expressing concerns, obtaining support, and having meaningful conversations with health care providers; (3) facilitated active personal and family engagement in decision making; (4) enabled recall of information and evaluation of satisfaction with decisions; (5) presented potential structural barriers.

Conclusions:

This study used qualitative evidence to demonstrate the usefulness of PtDAs and identify aspects patients with cancer find particularly beneficial.

Given the complexity and uncertainty of cancer treatment, people with cancer rely heavily on their providers for support in determining the best course of action and making medical decisions in alignment with their preferences.^1,2 Such collaboration is especially important for patient preference-sensitive decisions, which are decisions among competing options for an uncertain ratio of benefit to harm and are driven by patients’ values and preferences.^3,4 An example of a preference-sensitive decision in the context of breast cancer is the choice between a mastectomy and breast-conserving surgery for treating ductal carcinoma in situ.⁵ Since these two treatment options have relatively equivalent mortality and recurrence outcomes, patients may experience difficulty in deciding between the desire to keep their breasts or their need for peace of mind by removing all cancer with a mastectomy.^6,7

To help patients engage in the decision-making process, the Agency for Healthcare Research and Quality (AHRQ) has encouraged health care providers to implement shared decision making (SDM) using the following five steps: (1) seek patient participation, (2) help the patient explore and compare treatment options, (3) assess the patient’s values and preferences, (4) reach a decision with the patient, and (5) evaluate the patient’s decisions.⁸ The Ottawa Decision Support Framework (ODSF) was developed to guide health care providers in assessing patients’ decisional needs and integrating patient decision aids (PtDAs) into discussions for decision support.⁹

Since the publication of the ODSF in 1998, many cancer-related PtDAs have been developed to support patient preference-sensitive decisions.¹⁰ To ensure the quality of PtDAs in general, a model development process was created by an international group of researchers based on available literature, which illustrated the required steps during the early stages of design and development.¹¹ These steps include iterative processes of prototype development, alpha testing, and beta testing. Alpha testing examines the comprehensibility and usability of the PtDA. This is followed by beta testing, which examines the feasibility of the modified PtDA in real-life clinical settings. This development process concludes with a final review and distribution plan.¹¹ The use of alpha and beta testing ensures that end users’ experiences are incorporated in the design and evaluation of the PtDA and increases the likelihood of implementation in clinical practice. The importance of alpha and beta testing prompted the International Patient Decision Aid Standards (IPDAS) Collaboration to update its original checklist to inform decision aid standards.¹²

Despite guidance for developing a high-quality PtDA, the positive effects of PtDAs on decisional outcomes have been found to vary, especially in populations of people with cancer, e.g., breast cancer.¹³ When the Cochrane Collaboration conducted a meta-analysis to examine the effects of PtDAs for health decisions, PtDAs were found to help increase individuals’ knowledge, increase accuracy of risk perceptions, and decrease decisional conflicts.⁴ In contrast, a recent meta-analysis of randomized clinical trials showed that PtDAs developed between 2001 and 2016 for breast cancer-related decisions did not result in significant differences in patients’ knowledge, decision-making satisfaction, or anxiety levels.¹⁴

Understanding patient experiences or perceptions is an important component of the PtDA development process.¹² Focus groups or other qualitative methods are often utilized during alpha and beta testing to examine patients’ experiences with a PtDA.^15,16 Nevertheless, few studies have used a qualitative systematic review to inform health care policy and practice for the development of PtDAs. Although a previous meta-analysis by Stacey et al examined PtDAs’ positive effects, cancer treatment was not the primary health decision examined.⁴ Of the 105 studies included in that meta-analysis, cancer screening accounted for the majority of the health decisions and cancer treatments only for 9 decisions.⁴ In addition, the meta-analysis results regarding the positive effects of PtDAs were inconsistent with the results of a more recent (2021) meta-analysis conducted to understand the effects of breast cancer-related PtDAs.¹⁴

Meta-aggregation is a process of synthesizing qualitative findings across multiple studies to support quantitative reviews (e.g., meta-analyses of randomized clinical trials), to explain mixed results.¹⁷ Unlike approaches such as meta-ethnography or realist synthesis, which reinterpret study findings included in prior syntheses, the essential characteristic of a meta-aggregation is to accurately present the identified studies’ synthesized findings as intended by the original authors.¹⁸ Thus, a meta-aggregation can help explain discordant findings regarding PtDAs for cancer treatment as mentioned above.

Considering the complexity of both cancer treatment and the characteristics of patients with cancer, we chose to explore the experiences of adult patients with all types of cancer, stage 0 to IV, and their use of PtDAs for first-line cancer treatment decisions. In this article, we present qualitative evidence to illustrate the perceived effects of PtDAs reported by these patients.

Methods

Study Design

Following the Joanna Briggs Institute (JBI) guidance for evidence synthesis,¹⁹ we developed a protocol for meta-aggregation that detailed the following components: (1) review question, guided by the revised PICo (population, phenomena of interest, context) mnemonic for qualitative research; (2) inclusion and exclusion criteria; (3) search strategy and outcome; (4) quality appraisal; (5) data extraction; and (6) data synthesis.¹⁹

Review Question

The review question of this meta-aggregation was guided by the revised PICo mnemonic. The population of this review was patients with cancer, stages 0 (i.e., carcinoma in situ) to IV. The phenomenon of interest was patients’ experiences using decision tools or similar interventions, such as PtDAs, and the context was patients’ decision-making processes for first-line cancer treatment. The review question was, ‘What are the experiences of people with a cancer diagnosis (stage 0 to IV) using PtDAs to make decisions about their first-line cancer treatment?’ We used the National Cancer Institute’s definition of first-line treatment as part of the standard set of treatments generally considered to provide the best results with the fewest side effects.²⁰

Inclusion and Exclusion Criteria

The study inclusion and exclusion criteria were guided by the revised PICo. For population, we included studies that involved research participants who were 18 years or older and had a cancer diagnosis (stage 0 to IV). For phenomenon of interest and context, we included studies only if they had used a qualitative study design (e.g., phenomenology, interviews, observations, or mixed methods), to explore patients’ experiences using PtDAs or similar decision interventions for first-line treatment. Exclusion criteria were studies that did not report qualitative evidence about patients’ experiences with PtDAs; conference abstracts; studies that illustrated combined experiences with PtDAs from patients, family caregivers, and/or health care providers, and could not differentiate the experiences of patients from those of others; and full-text articles not available in English.

Search Strategy and Outcome

With the assistance of an experienced librarian, we built comprehensive and specific search strategies following the JBI three-phase process. During the first phase, we identified 4 databases (CINAHL, Ovid MEDLINE, APA PsycINFO, and EMBASE) and appropriate keywords (in the title and abstract) that described decision tools for each database. Keywords identified included shared decision making, decision aids, decision making (Medical Subject Headings [MeSH]), decision support techniques (MeSH), treatment planning, patient participation (MeSH), choice behavior (MeSH), patient empowerment, patient engagement, and patient involvement. We then conducted database-specific searches to identify studies that evaluated cancer patients’ experiences with PtDAs or similar interventions (Supplemental Table 1). Finally, we sought additional articles through hand searches of the included studies’ reference lists. Literature searches were conducted in February 2021 without date limits.

The flowchart detailing the process of study collection and selection is shown in the Figure. A total of 7,222 potentially eligible studies were found in the 4 databases: 3,764 from CINAHL, 1,893 from Ovid MEDLINE, 1,470 from EMBASE, and 95 from APA PsycINFO. Of those articles, 938 were duplicates, thus leaving 6,284 for subsequent screening. The majority of studies (n = 6,264) were found to be ineligible due to the following reasons: treatments not for first-line treatment (e.g., breast construction or experimental trial); cancer screening; excluded populations of interest; reviews or commentaries. From the remaining 20 studies, we excluded one study that compared two PtDAs but did not provide clarity about the PtDAs examined; one study that included illustrations of users’ experiences with decision tools but could not differentiate among the experiences of patients, health care providers, and family caregivers; and two studies lacking illustrations (i.e., study participant quotations). Thus, 16 studies were included in our review.

Figure.

PRISMA flowchart of the search and results

Quality Appraisal

To ensure that the included studies met our rigorous expectations for high-quality evidence to inform health care practice and policy, two authors (LL and MJ) independently reviewed all selected papers using the JBI Critical Appraisal Checklist for Qualitative Research.²¹ This checklist consists of 10 items, which include congruity among theoretical premises, methodological approach, and data-collection methods. Each item on the checklist was rated as “Yes,” “No,” “Unclear,” or “Not Applicable.” Risk of bias was categorized as high if a study scored 49% or fewer “yes” responses on the JBI checklist, moderate for a JBI score between 50% and 69%, and low for a JBI score of 70% or more. This categorization was based on previous use of the checklists by other systematic review authors and a consensus among the authors of this review. The authors reported an overall appraisal of each study and determined which studies to include in the final analysis. Once the initial appraisals were completed, the two authors discussed all disagreements until they reached consensus.

Data Extraction

Once the studies were selected for final analysis, two authors (LL and AM) extracted qualitative data independently using ATLAS.ti 9.0. The authors first immersed themselves in the data by extracting each study’s purpose, location, study design, participant characteristics, types of decisions (i.e., context), and decision tools. Then, each author read and reread the text to extract study findings and supporting illustrations. In this review, findings refer to verbatim extracts of the study authors’ text regarding their analytic interpretation of their data, and illustrations refer to direct quotations from study participants, study authors’ field-work observations, or other supporting data (e.g., survey data).

The authors then independently rated the congruency between the study findings and the supporting illustrations, using the following three levels of credibility: unequivocal (i.e., findings supported by a direct quotation whose association is beyond reasonable doubt), equivocal (i.e., findings supported by a direct quotation but one that does not show a clear association), and unsupported (i.e., findings unsupported by the reported data). As per the methodological guidance for meta-aggregation,¹⁹ findings that were rated unequivocal and equivocal shared equal recognition in the synthesis.

Once the authors completed extracting the findings from the included review studies and assessed the congruency between the study findings and supporting illustrations, they compared each finding and credibility rating and discussed disagreements until they reached a consensus.

Data Synthesis

In the next step, the authors assembled the findings of the included studies rated as unequivocal and equivocal and examined them for similarities in meaning. Similar study findings were grouped into categories. A category was determined when at least two sufficiently similar findings were identified from the included review studies. Next, similar categories were grouped into synthesized findings based on similarities in meaning as determined by the authors. Each synthesized finding was determined when at least two categories were present.¹⁸ This process is data concentration. These categories and synthesized findings were initially created by the two authors (LL and AM) individually using an iterative process, and then by consensus. The synthesized findings then were reviewed with two additional authors (MM and AZD). The meta-aggregation process was iterative and included consensus of multiple nurse scientists who specialize in palliative and hospice care within the field of oncology.

Results

Study and Participant Characteristics

A total of 16 articles, published between 2005 and 2020, were included in this review. The majority (n = 9) were qualitative descriptive studies, 6 used a mixed-methods design, and 1 used a case study design. Of the 16 PtDAs or similar interventions, 7 were for breast cancer, 5 for prostate cancer, and the rest for colorectal, thyroid, and advanced cancers. One PtDA was developed specifically for older patients (70 years and older), and another specifically for patients with low socioeconomic status. The PtDAs were designed either to be interactive for use during consultations with health care providers or to be delivered as preprepared content in paper and/or electronic formats. For context of use, the PtDAs for patients with breast cancer were generally used for decisions regarding mastectomy versus breast-conserving surgery, whereas PtDAs for patients with prostate cancer were used for choices between active surveillance, radiation therapy, or prostatectomy. Table 1 describes each study and participant characteristics in detail.

Table 1.

Percentage of “Yes” Ratings for Methodological Quality and Characteristics of 16 Qualitative Studies Included in the Meta-aggregation and Listed by Diagnostic Groups

First Author; Total Percentage of “Yes” Ratings	Study Objective; Number and Diagnosis of Patients with Cancer (n)	Testing Phase Tool Development	Conceptual Framework/Principles	Treatment Options	Decision Needs Assessment	Methodology	Tool or Intervention	Tool Dissemination Format(s)
BREAST CANCER
1. Belkora et al.22 (90%)	To explore whether decision services matched the program theory and what aspects of decision support service was thought to be effective and ineffective; n = 1	Beta	N/A	Systematic treatments after lumpectomy (e.g., RT, chemotherapy, hormonal therapy, biologic therapy, and ovarian suppression)	No	Case study (survey and semistructured interview)	Decision aid tool; consultation planning; audio-recording and summary of consultation	Video and booklet
2. D’Alimonte et al.23 (70%)	To examine whether the format and information of a decision aid prototype was clear and acceptable for older women; n = 12	Alpha	ODSF	Adjuvant RT or no adjuvant RT after lumpectomy	Yes	One-on-one interviews	Readiness to make decisions; information about treatment options, benefits and risks; preferred role during the decision-making process; needs for additional information; planning and sharing their plan with doctorsa	Pocket-size workbook
3. Durand et al.24 (80%)	To develop and examine the usability, acceptability, and accessibility of a pictorial encounter decision aid tailored for women with low socioeconomic status; n = 10 in phase 3	Alpha	CBPR approach to receive feedback from stakeholders	Mastectomy or lumpectomy with RT	No	Semi-structured interviews	Information about 2 options and trade-offs; 9 frequently asked questions with images to illustrate each answer	Paper
4. Herrmann et al.25 (80%)	To examine perceived benefits of a PtDA for a decision on NAST; n = 20	Beta	IPDsAS	NAST → surgery or Surgery → chemotherapy	Yes	Semi-structured telephone interviews	Information about cancer, treatment options, treatment modalities, risks, and benefits; a value clarification exercise; a page for notes; a glossary; additional resources	Website and paper
5. Savelberg et al.26 (80%)	To develop an examine a PtDA for primary treatment for early-stage breast cancer; n = 26	Alpha	IPDAS	BCS with RT or mastectomy with or without RT	No	Think-aloud interviews (1st and 3rd rounds), focus group interviews (2nd round), and telephone interviews (4th round)	Purpose of PtDAs and SDM; tailored information about treatment options; summary of pros and cons and side effects of each option; value elicitation statementsb	Interactive and personalized website
6. Hahlweg et al.27 (80%)	To adapt and evaluate the implementation of 2 PtDAs regarding surgical options and breast reconstruction for use during clinical encountersc; n = 13 in phase 2	Alpha & Beta	IPDAS	Mastectomy or lumpectomy with RT	No	Alpha testing: focus groups/interviews Beta testing: direct observation	Information about different treatment options; answers to frequently asked questions for each option	1-page document
7. Savelberg et al.28 (80%)	To understand the experiences of patients with breast cancer and the SDM process and the support received through a PtDA; n = 20	Beta	N/A	BCS with RT or mastectomy with or without RT	No	Semi-structured, face-to-face/phone interviews	Tailored information about treatment options; a 5-minute motivational video	Interactive and personalized website
PROSTATE CANCER
8. Holmes-Rover et al.29 (80%)	To design a PtDA for patients with low levels of literacy and education using plain language and document design strategies; n = 25 for focus groups	Alpha	Plain language and document design strategies	Active surveillance; radical prostatectomy; brachytherapy; external beam RT	Yes	Focus groups	Information about treatment options, risks, benefits, and uncertainty; glossary of definitions of medical terms; encouragement for SDM; goal for treatment	Booklet, website, and audio-tape
9. Hacking et al.30 (80%)	To understand the experiences of patients with prostate cancer and doctors with decision navigation; n = 6	Beta	N/A	Surgery; RT; active monitoring	No	Semi-structured telephone interviews	Question listing; navigator support for note-taking and audio-recording during the consultation; provision of consultation summary and audio-recording	Checklist for questions asked during the consultation
10. Al-Itejawi et al.15 (80%)	To develop a PtDA that can be integrated into clinical practice; n = 14 and 5 for semi-structured interviews and think-aloud interviews, respectively.	Alpha & Beta	IPDAS	Active surveillance; radical prostatectomy; brachytherapy; external beam RT	Yes	Semi-structured interviews	Information about treatment options, risks, and benefits; glossary of definitions for complex terms	Website and booklet
11. Jones et al.31 (90%)	To understand the experience of patients and decision partners using an interactive PtDA to make treatment decisions for advanced prostate cancer; n = 35 pairs of patients and partners	Beta	Conflict theory of decision making	Hormonal therapy; immunotherapy; chemotherapy; stopping treatment	Yes	Semi-structured telephone interviews	Disease-specific education pamphlets; decision-making theory description; a decision balance sheet for values clarification; structured time with health professionals; decision collaboration with caregivers; decision preference level; audio CDs that shared patients’ decision experiences	Interactive intervention program that uses educational pamphlets, a balance sheet, a CD, a graphic diagram, and a questionnaire to facilitate the decision-making process with health professionals
12. Miles et al.32 (70%)	To understand perceived usefulness and acceptability of a computerized PtDA developed to facilitate the decision process; n = 12	Beta	N/A	No additional chemotherapy, 1 chemotherapy drug, or 2 chemotherapy drugs after surgery	No	Face-to-face interviews	Information about pros and cons of each option, risk of recurrence, net benefits, prognosis, methods of chemotherapy administration, insertion of a central line, clinical visits for chemotherapy, duration of treatment, and side effects; a value clarification exercise	Website
THYROID CARCINOMA
13. Sawka et al.33 (70%)	To examine usability of a newly developed patient-directed computerized PtDA; n = 12	Alpha	N/A	Adjuvant radioactive iodine treatment or not after thyroidectomy	Yes	Think-aloud method and interviews	Information about disease prognosis, risks, and benefits; reasons for or against adjuvant radioactive iodine treatment; uncertainty of the treatment; follow-up implications; and reproductive considerations	Website
COLORECTAL CANCER
14. Butow et al.34 (80%)	To examine patients’ experience of using an interactive PtDA for adjuvant treatment decisions, and how the PtDA influenced their knowledge, anxiety, attitudes, and preferences for treatment options; n = 14	Alpha	N/A	RT with chemotherapy or RT without chemotherapy	No	Focus groups	N/A	Interactive computer-based PtDA for use during the consultation and a booklet PtDA for use after the consultation
MULTIPLE DIAGNOSES
15. Jones et al.35 (100%)	To understand the feasibility and acceptability of a PtDA using an interactive decision-making process among people with cancer (newly diagnosed breast cancer, advanced prostate cancer, and advanced lung cancer) and their caregivers; n =27 pairs of patients and caregivers	Beta	Conflict model of decision making	Decisions for all 3 types of cancers: starting/changing/stopping anti-cancer treatment; hospice considerations; advance directive; future decisions Decisions specific to prostate cancer: starting chemotherapy Decisions specific to breast cancer surgery: breast-conserving surgery with RT or mastectomy Decisions specific to breast cancer adjuvant therapy after surgery: chemotherapy, hormone therapy, or both	Yes	Semi-structured telephone interviews	Disease-specific education pamphlets; decision-making theory description; a decision balance sheet for values clarification; structured time with health professionals; decision collaboration with caregivers; decision preference level; audio CDs that share patients’ decision experiences	Interactive intervention program that uses educational pamphlets, a balance sheet, a CD, a graphic diagram, and a questionnaire to facilitate the decision-making process with health professionals
ADVANCED CANCER
16. Henselmans et al.36 (80%)	To examine how a patient communication aid influenced patients’ decision making and well-being; n = 13 and 18 in study 1 and 2, respectively	Alpha & Beta	Consulted examples	Disease-targeted treatment, best supportive care, or watchful waiting	No	Alpha testing: semi-structured focus group or interviews Beta testing: semi-structured telephone interviews	Information about shared decision making; a question prompt list; value clarification methods	Brochure

Abbreviations: BCS, breast-conserving surgery; CBPR, community-based participatory research; IPDAS, International Patient Decision Aid Standards; NAST, neoadjuvant systemic therapy; ODSF, Ottawa Decision Support Framework; PtDA, patient decision aid; RT, radiation therapy; SDM, shared decision making.

^aThe content of the PtDA was obtained from another study.³⁷

^bThis study also assessed a PtDA for breast reconstruction after mastectomy; however, we did not assess this second PtDA in our review.

Methodological Quality

All included 16 studies met most of the items on the JBI Critical Appraisal Checklist for Qualitative Research. However, some lacked required information or were unclear. For example, only 10 studies mentioned the theory/conceptual framework that had been used to guide the development of their PtDA.^{15, 23–27,29,31,35,36} This made it difficult to determine congruity between the stated philosophical perspective and the study’s research methodology. Only 2 studies reported whether the researchers’ beliefs and values (i.e., cultural and theoretical orientation) had an influence on their conduction of qualitative studies.^31,35 Five studies included relatively few illustrations to support their interpretations.^{23,26,27,33,34} Despite these limitations, all included studies had a low risk of bias and showed congruity between the research methodology, objectives, data collection, and result interpretation. Table 1 also includes the total percentage of “Yes” ratings for the methodological quality of each included study.

Synthesized Findings

Table 2 depicts the progression of data concentration—as described in the Data Synthesis section—from the identified study findings to 19 categories and 5 synthesized findings. The synthesized findings were that the PtDAs or other decision tools (1) improved understanding of treatment options and patient values and preferences; (2) served as platforms for expressing concerns, obtaining support, and having meaningful conversations with health care providers; (3) facilitated active personal and family engagement in decision making; (4) enabled recall of information and evaluation of satisfaction with decisions; and (5) presented potential structural barriers.

Table 2.

Results of Data Concentration Process from 16 Selected Studies: Study Findings, 19 Categories, and 5 Synthesized Findings of Patient Experiences Using Patient Decision Aids

Study Findings	Category	Synthesized Finding
• “…patients preferred using the decision aid instead of information they found by searching online. They perceived the information provided in the decision aid to be more trustworthy and targeted to their needs, compared with sources that they identified on the Internet.” [#4 p5; U]a	1. Provide patients access to summarized, reliable, and targeted information in a timely manner	1. Improved understanding of treatment options and patient values and preferences
• “Six women felt that the Picture Option Grid provided a detailed, precise and realistic portrayal of breast cancer treatments.” [#3 p6; U]
• [A participant said that the study supplied] “information that I would not have been able to necessarily accumulate in such a short period of time on my own.” [#15 pE27; U]
• “Many thyroid cancer survivors liked the idea of having access to information on a public website….” [#13 pE26; C]
• “The decision aid enhanced patients’ knowledge and understanding of the treatment options available to them by summarizing and extending the information provided by their doctors.” [#4 p4; U]	2. Help patients recognize the existence of treatment options
• “…respondents indicated that the PCA could create choice awareness, by presenting different treatment options….” [#16 p919; U]
• “…most patients reported that the clinicians…made them aware about two relevant treatment options.” [#7 p5; U]
• “It [PtDA] helped women comprehend and make sense of their cancer and treatment options.” [#4 p5; U] • “…the included graphs and statistics were particularly helpful to understand the potential risks and benefits of their treatment options.” [#4 p5; U] • “Many women reported that the decision aid made up for their perceived lack of medical expertise by providing structured, objective information.” [#4 p5; U]	3. Help increase patients’ knowledge and understanding of the treatment options, including pros and cons
• “The patient decision aid was deemed complete and useful for four of the five patients as it would allow them to be at the same knowledge level as the health care professionals.” [#10 p1141; C]
• “The majority of patients understood that the aim of chemotherapy was to reduce the chances of cancer coming back….” [#12 p6; U] • “Two patients reported higher net benefit of chemotherapy figures and a clearer understanding of the difference between one and two chemotherapy drugs.” [#12 p6; U] • “…some patients understood that any recurrence would potentially be more aggressive and harder to treat than their colorectal cancer had been….” [#12 p6; U]
• “…six participants found the icon arrays representing the risk of cancer recurrence helpful in understanding and clarifying risks associated with each treatment option.” [#3 p6; U] • “Participants felt that the pictures simplified and clarified the textual content and layout, were more explanatory than words alone, and easier to understand.” [#3 p6; U]
• “Participants believed the decision aid was helpful in understanding treatment decisions.” [#11 p6; U]
• “Ninety-two percent of participants felt that the DA prototype increased their knowledge about stage I breast cancer treatment options.” [#2 p62; U]
• “Most believed that…patients are not faced with surprising side effects.” [#10 p1139; U]	4. Help patients know what to expect and prepare for treatment and its impact
• “For some patients, the graphs provided information they would otherwise have overlooked: for one patient, it was the additional benefit conferred by two, compared with one, chemotherapy drug…; for another patient, it was the risk of death from other causes.” [#12 p5; U]
• “…nine participants considered that another major benefit of the Picture Option Grid was to prepare women for the upcoming treatments, know what to expect and make a treatment decision that is informed by the perceived impact that each treatment will have on them, their body, their lifestyle and quality of life.” [#3 p6; U] • “They [participants] felt that the pictures would have prepared them for the treatment and its aftermath….” [#3 p7; U]
• “The man’s wife, his caregiver, mentioned that her husband began to think about important issues that he had never thought about before.” [#15 pE27; U] • “The patients and caregivers believed the decision aid provided more insight into the progression of the disease and the treatment….” [#15 pE27; U] • “Some [participants] said it [decision aid] ‘opened their eyes’ to decisions they would be facing.” [#15 pE27; U]
• “The decision aid highlighted issues that participants were unaware of, thereby helping them consider and discuss issues in depth.” [#11 p7; U]
• “Positive reactions included the feeling that it was an accurate reflection of their (often mixed) views about chemotherapy, was clearer, more explicit, more rational and less emotional, and empowering for the patient.” [#12 p6; U] • “One patient reported feelings of guilt when answering the values clarification exercise, because although they viewed their health as important they were opting to do something that did not necessarily maximize their chances of maintaining their health.” [#12 p6; U]) • “Another felt it highlighted the importance of life over everything else.” [#12 p6; U]	5. Help patients understand their values and preferences
• “The Picture Option Grid was perceived to…clarify their preferences about available treatment options.” [#3 p6; U]
• “They felt that they were helped to arrive at the ‘correct decision’ or a decision they ‘could live with.’” [#15 p6; U] • “The patients and caregivers believed the decision aid…provided them more independence to decide on a treatment that was right for them.” [#15 p6; U]
• “Participants felt they had more meaningful conversations with the healthcare provider after discussing their values.” [#11 p7; U] • “Participants agreed that quality of life was more important than extending life at the cost of suffering treatment complications.” [#11 p7; U]
• “The decision aid…assisted them [women] in making an informed, rational decision based on their individual circumstances and preferences.” [#4 p5; U]
• “…the PCA may enable elaboration, by helping patients to clarify their values….” [#16 p919; U]
• “Good to have a more detailed explanation on each treatment option in the PDA.” [#10; U] • “They thought that the information on radiation therapy was too concise, with short-term and long-term effects insufficiently presented.” [#5; U] • “The information on breast reconstruction options, regarding the duration of the surgery and the recovery time, emotional stress, social impact and time investment, was perceived as too brief and optimistic.” [#5; U] • “Patients thought the risk communication was not very clear, especially where narrative terms such as ‘rarely’ and ‘few’ were used to indicate side effects of radiotherapy.” [#5; U]	6. PtDAs should have more clear and detailed information
• “Some post-treatment men felt that the booklet was biased toward watchful waiting as a treatment choice.” [#8; U] • “Some patients perceived it to be in favour of NAST and wished it contained more information on upfront surgery.” [#4; U]	7. PtDAs should not be in favor of specific treatment options
• “Occasionally, patients referred to the booklet to explain how worried they were about their prostate cancer or specific treatments. The decision aid, in these instances, appeared to serve as either reassurance, or as a vehicle for expressing concern to the physician.” [#8 p283; U]	8. Help patients express their concerns	2. Served as platforms for expressing concerns, obtaining support, and having meaningful conversations with health care providers
• “A few patients expressed their concerns and fear that they lacked the knowledge to make such an important decision, which resulted in the clinician helping them to eliminate these concerns or increase their knowledge by arranging an appointment with another professional, e.g. a radiation or medical oncologist.” [#7 p6; U]
• “The decision aid also helped women deal with the fears associated with their treatment options….” [#4 p5; U]	9. Help patients reduce the fears and anxiety that arise from the decision-making process for cancer treatment
• “Some patients…used it [the graph] to help them cope with their decision.” [#12 p5; U]
• “They [patients] also reported that the benefits of the pictures, and of the Picture Option Grid, were even greater when patients were anxious and emotional, as a result of a recent cancer diagnosis, and unable to process information rationally and efficiently.” [#3 p6; U] • “…the pictures…would have relieved some of the fears of the unknown, and concerns about the consequences of treatment… that several patients had after their cancer diagnosis.” [#3 p7; U] • “One participant explained that using the Picture Option Grid would have alleviated some of her fears….” [#3 p7; C]
• “…they [patients] generally felt well-informed and well taken care of. The effort of the breast cancer nurses was especially appreciated.” [#7 p5; U]	10. Help patients feel supported by health care professionals during this difficult time
• “Having a Navigator present in the consultation made all patients feel supported.” [#9 p668; U] • “Having a Navigator to discuss issues with, in combination with the other aspects of the intervention, was supportive during a difficult time.” [#9 p668; U]
• “Participants felt that having another line of support that they could call on for assistance, to speak to about different issues, or just see a familiar face at the clinic visit was an added value.” [#15 pE29; U] • “…participants enjoyed having the study nurse contact them on a routine basis to follow up on their care, answer any questions they had about the study, and serve as an extra line of support.” [#15 pE28; U]
• “The decision aid…helped them…by prompting additional questions to ask their doctors during the consultation.” [#4 p5; U]	11. Help patients formulate and ask questions during consultation with health care providers
• “…the PCA might provide control over information by prompting questions, helping to remember questions….” [#16 p918; U]
• “All patients described how preparing questions before the consultation disentangled their thoughts and identify what they wanted to ask.” [#9 p667; U] • “The consultation plan helped all patients focus on and address their questions during the consultation.” [#9 p667; U]
• “The Picture Option Grid was perceived to…help patients formulate and ask questions….” [#3 p6; U]
• “Facilitating more interactive contact with the health care provider, as well as the oncology nurse, improved patients’ ability and willingness to ask questions and discuss treatment decisions.” [#11 p7; U]
• “Some women took parts of the DA to the next consultation with their specialist. This served as a platform for further discussion….” [#4 p5-6; U]	12. Facilitate patient-centered discussions between patients and health care providers
• “…the way the clinicians supported and guided them and their approachability. Some patients experienced patient centeredness when health care professionals showed a true personal interest in them.” [#7 p5; U]
• “Through preparing the plan, patients felt doctors were prepared for their individual needs, ensuring a smoother exchange of information.” [#9 p667; U]
• “…three women felt that the Picture Option Grid could potentially change the conversation and interaction occurring between the patient and health professional, empowering women to discuss what truly mattered to them.” [#3 p6; C] • “The Picture Option Grid was perceived to facilitate a discussion between the patient and surgeon….” [#3 p6; U]
• “The decision aid facilitated closer patient-healthcare provider relationships, allowing more patient-centered and productive conversations.” [#11 p7; U] • “Participants stated that the decision aid benefited interactions with their healthcare provider. Participants felt they had more meaningful conversations with the healthcare provider after discussing their values.” [#11 p7; U] • “Facilitating more interactive contact with the health care provider, as well as the oncology nurse, improved patients’ ability and willingness to ask questions and discuss treatment decisions.” [#11 p7; U] • “…the balance sheet (prioritizing treatment decision benefits and risks) helped the conversation between the patient/decision partner and the healthcare provider….” [#11 p7; C]
• “Ms. X credited the consultation plan with making her appointment with Dr. HR efficient and productive, due to the direct and explicit communication of her objectives for treatment and decision making.” [#1 p364; U]
• “All patients reported that the Decision Navigation materials helped them to deliberate options.” [#9 p667; U]	13. Help patients choose among treatment options by weighing evidence
• “Some patients found it helpful to see the portion of the graph that illustrated the net benefit of chemotherapy, whether they wanted chemotherapy or not….” [#12 p5; U]
• “The process of using balance sheets to examine a decision’s pros and cons with a nurse or physician and listening to audio files about making decisions appeared to have helped patients obtain more insight about choosing the next step for their treatment.” [#15 pE28; U]
• “…it [the video and booklet] presented balanced information about whether or not to take additional therapy.” [#1 p364; U]
• “Women who…were involved in the decision-making process seemed to be more satisfied and certain about their decision.” [#4 p6; U] • “…family members used the decision aid as well and thus became more informed and involved in the decision-making process.” [#4 p6; U]	14. Increase patient and family involvement in the decision-making process	3. Facilitated active personal and family engagement in decision making
• “Seven participants considered that another benefit of the Picture Option Grid was to promote patient engagement in decision-making.” [#3 p6; U]
• “The decision aid helped patients and caregivers to be more involved in treatment decisions.” [#15 pE28; U] • “…it [the DA] helped them [patients and caregivers] have a more active role with their healthcare provider.” [#15 pE28; U] • “The patients and caregivers believed the decision aid…provided them more independence to decide on a treatment that was right for them.” [#15 pE27; U] • “One patient with advanced-stage prostate cancer was very impressed by the increased involvement of his wife because of the process of the study.” [#15 pE28; U]
• “Some women reported that their family members used the decision aid as well and thus became more informed and involved in the decision-making process. This saved patients from spending time and effort educating their support persons about the risks and benefits of the different treatment options available to them.” [#4 p6; U]	15. Facilitate the relationships between patients and family caregivers
• “…facilitating conversation with relatives at home.” [#16 p919; U]
• “…the participants began to feel that they were understanding one another better through the process.” [#15 pE28; C]
• “Reading and rereading the decision aid at home in-between the two consultations allowed women to easily integrate the decision aid into their care. They appreciated the opportunity to reconsider their options at their own pace after consulting their surgeon.” [#4 p4; U]	16. Facilitate patients’ recall of treatment information provided after a consultation	4. Enabled recall of information and evaluation of satisfaction with decisions
• “Most of the patients indicated that it had been useful to read all the information again. They recognized most of the information they had already received verbally….” [#7 p6; U]
• “The consultation materials (consultation summary and CD) were reported as beneficial to all patients in assisting their memory of treatment information provided during a difficult consultation.” [#9 p667; U]
• “Ms. X relied on the audio recording to remind her of a follow-up issue that she felt she might otherwise have overlooked.” [#1 p364; U] • “During treatment, Ms. X also found the written summary a helpful document to refer back to.” [#1 p364; U] • “…she used the consultation summary a month after her visit as a guide to where she was in her treatment plan, and a reminder of the reasoning behind her decisions.” [#1 p364; U]
• “…the decision aid helped patients…confirm their decision….” [#4 p6; U]	17. Build patients’ confidence and confirm the decision they made
• “…reading this [the PtDA] again encouraged them to rely on their first intuitive preference or to feel confirmed in their deliberation about the treatment decision.” [#7 p6; U]
• “Using the materials enhanced patients’ confidence in the decisions reached during the consultation.” [#9 p668; U]
• “The Picture Option Grid was perceived to…improve confidence….” [#3 p6; U]
• “Offering the Picture Option Grid…would be particularly beneficial if provided prior to the surgical consultation.” [#3; U] • “Patients only briefly looked at the EDA during the encounter or did not look at it at all.” [#6; observation]	18. PtDAs should be provided in advance of a consultation with health care providers	5. Presented potential structural barriers
• “Barriers to the use of EDAs was individual patient characteristics (e.g., language barriers).” [#6; observation]. • “Reasons for not using the PtDA was no computer skills.” [#7; data]	19. Barriers related to language and computer skills

Abbreviations: DA, decision aid; EDA, encounter decision aid; NAST, neoadjuvant systemic therapy; PCA, patient communication aid; PtDA, patient decision aid.

^a#s indicate which study (from Table 1) the illustration is drawn from. C = credible: an identified finding supported by an illustration (patient quotation) that lacks a clear association, and thus is open to challenge; U = unequivocal: an identified finding that is accompanied by an illustration (patient quotation) that is beyond reasonable doubt.

Improved Understanding of Treatment Options and Patient Values and Preferences

Patients participating in 10 of the included studies perceived that PtDAs helped them with preference-sensitive decision making by enhancing their understanding of cancer and their treatment options.^{15,23–25, 28,31–33,35,36} In 4 of these studies, patients reported having direct access to summarized, reliable, and objective information through PtDAs that adequately met their informational needs.^24,25,33,35 In 3 studies, when health care providers offered patients a PtDA and implemented SDM, patients became aware of the available treatment options.^25,28,36 Patients in 1 study also perceived that they had the same knowledge level about treatment options as their health care providers.¹⁵ The patients in 5 of the 10 aforementioned studies reported that PtDAs helped them consider treatment options in more depth when making treatment decisions by enabling them to consider the ramifications of various cancer treatments without overlooking important issues.^{15,24,31,32,35} In addition, in 2 studies, patients reported that it became easier to comprehend risks and benefits due to the PtDA use of statistics, pictures, icon arrays, and/or graphs, since these were more self-explanatory than words.^24,25 This enhanced understanding helped these patients be better prepared for the treatment process and the side effects associated with the cancer treatments they chose.

“Six women felt that the Picture Option Grid provided a detailed, precise and realistic portrayal of breast cancer treatments.” ²⁴

“…the included graphs and statistics were particularly helpful to understand the potential risks and benefits of their treatment options.” ²⁵

In 5 studies, the PtDAs included values clarification exercises to help patients identify a treatment preference that was consistent with their values.^{25,31,32,35,36} These exercises were perceived as helpful in clarifying what mattered most to the patients.^{25,31,32,35,,36}

“Positive reactions included the feeling that it [the values clarification exercise] was an accurate reflection of their (often mixed) views about chemotherapy, was clearer, more explicit, more rational and less emotional, and empowering for the patient.” ³²

Some patients prioritized quality of life over life prolongation in 1 study.³¹ They reported that clarification of their values and preferences made them feel empowered to make independent decisions and more satisfied with the decisions they made.^32,35

However, despite the perceived improvement in understanding treatment options and preferences, patients in 4 studies reported that the PtDA provided was too simplistic or biased.^15,25,26,29 In 2 studies, the patients reported that the PtDAs did not provide detailed information on treatment options, recovery time, or treatment consequences.^15,26 These patients also found the PtDAs were unclear about treatment description or cancer recurrence.^15,26 In one of these studies, the patients found information about the treatment side effects was either insufficient or unrealistic, since these patients had experienced more side effects than those mentioned in PtDAs.²⁶ They found the descriptive terms used to describe the severity of side effects, such as rarely and few, to be confusing.²⁶

“They thought that the information on radiation therapy was too concise, with short-term and long-term effects insufficiently presented.” ²⁶

In another study, the patients perceived the use of cartoons to depict patients and health care providers to be insensitive and inappropriate.²⁴ Patients also perceived that the PtDAs were biased toward a specific treatment option because the PtDA used inconsistent expressions to depict patient characters or presented inadequate information on some options in two other studies.^25,29

^“Some post-treatment men felt that the booklet was biased toward watchful waiting as a treatment choice.” ²⁹

Served as Platforms for Expressing Concerns, Obtaining Support, and Having Meaningful Conversations with Health Care Providers

Patient participants in 10 of the included studies perceived PtDAs as an avenue to express concerns or emotions associated with complex decision making.^{22,24,25,28–32,35,36} For instance, in 2 studies, patients used PtDAs to talk about their specific concerns with their health care providers.^28,29 In 3 studies, some of the decision support interventions paired each patient with a navigator or a nurse. These patients reported a preference for having these people as extra support to answer questions after a consultation with their physicians.^28,30,35

“…participants enjoyed having the study nurse contact them on a routine basis to follow up on their care, answer any questions they had about the study, and serve as an extra line of support.” ³⁵

In 3 other studies, patients reported that the PtDAs helped reduce their fears or anxiety.^24,25,32 This was especially true in one study for those newly diagnosed with cancer, who were able to make rational decisions with less anxiety and fear.²⁴

“…the pictures…would have relieved some of the fears of the unknown, and concerns about the consequences of treatment… that several patients had after their cancer diagnosis.”²⁴

Patients also reported using PtDAs as platforms for meaningful conversations with their health care providers. In 4 studies, patients who were given access to PtDAs prior to their consultations mentioned having enough time to read and process the information and formulate questions.^24,25,30,36 This enabled them to disentangle their thoughts and encouraged them to send their questions to their providers as reported in one of the studies.³⁰ In turn, the health care providers were better prepared to answer questions in a meaningful and productive way. This interactive contact was perceived as facilitating closer relationships and rapport by allowing more person-centered and productive conversations in 5 studies.^{22,24,28,30,31}

“The decision aid facilitated closer patient-healthcare provider relationships, allowing more patient-centered and productive conversations.” ³¹

Facilitated Active Personal and Family Engagement in Decision Making

The patients who participated in 4 of the studies perceived that they and their family caregivers became more involved and engaged in decision making by using the PtDAs.^24,25,35,36 In 2 of these studies, patients reported that the PtDAs helped them include their family caregivers in the decision-making process and educate family caregivers about treatment options and associated benefits and risks.^25,35

“Some women reported that their family members used the decision aid as well and thus became more informed and involved in the decision-making process. This saved patients from spending time and effort educating their support persons about the risks and benefits of the different treatment options available to them.” ²⁵

In one study, patients reported that the experience of reading PtDAs led their family caregivers to ask health care providers questions and actively engage in discussions.³⁵ Both patients and family caregivers felt the PtDAs provided them more independence to decide on a treatment that was right for them.³⁵ Most importantly, patients perceived that the interactions during the process of using PtDAs provided an opportunity for patients and family caregivers to understand each other better, which strengthened their relationship during a difficult time, in three of the four studies.^25,35,36

Enabled Recall of Information and Evaluation of Satisfaction with Decisions

Patients can refer to PtDAs after their consultations with health care providers, and the patient participants in 4 studies perceived that the PtDAs facilitated recall of treatment information that had been provided.^22,25,28,30 Rereading and recall were especially beneficial for treatment information that had been provided during a difficult consultation for patients in 2 studies.^22,30 In one study, patients also reported that PtDAs enabled them to evaluate their decisions along the way and contemplate whether they needed to reconsider decisions.²⁵ The PtDAs reminded patients how they had reached their decisions in one study.²²

“…she used the consultation summary a month after her visit as a guide to where she was in her treatment plan, and a reminder of the reasoning behind her decisions.” ²²

Reading PtDAs again encouraged patients to trust their first intuitive preference and affirmed their deliberation and treatment decision in three of these studies.^24,25,28

Presented Potential Structural Barriers

Patients in 3 studies reported barriers when the PtDAs were used in clinical encounters with health care providers.^24,27,28 In one study, patients were found to not be given sufficient time to read through the PtDA, and they experienced language barriers when trying to use the PtDAs.²⁷

“Patients only briefly looked at the EDA [encounter decision aid] during the encounter or did not look at it at all.”²⁷

In another study, the patients lacked the computer skills to navigate an online PtDA.²⁸

Discussion

This reports on the findings of a meta-aggregation of 16 studies of patients’ perceptions of using PtDAs for their cancer treatment decision making. Our synthesized findings of the 16 included studies indicated that most patients find PtDAs beneficial in terms of understanding treatment options and gaining clarity on their own values and preferences. They reported that the PtDAs enhanced communication with health care providers and facilitated the inclusion of family caregivers in the decision-making process. Finally, PtDAs also allowed for later recall of their conversations with health care providers about treatment options and to review their decisions. However, despite the perceived benefits, we identified one negative synthesized finding. Some patients with cancer reported that the information provided in PtDAs was either insufficient or inaccessible due to language barriers and their lack of computer skills. This synthesized finding was in line with the recent revision of the ODSF that emphasizes the importance of assessing patient decisional needs during the decision-making process.¹⁰

One of our synthesized findings was that all PtDAs included in our review were perceived by patients to provide informational support for themselves and their family caregivers. According to one study, given the inherent difficulty in making cancer treatment decisions, patients need sufficient objective information to help them make decisions.²² This is especially true for preference-sensitive decisions, when patients face multiple treatment options or when evidence is insufficient to support one definitive option as mentioned in another study.³⁸ In fact, the ODSF lists inadequate knowledge as one of patients’ decisional needs.¹⁰ A recent systematic review of 45 decisional needs studies from 7 countries confirmed this finding.³⁹ Of the studies included in this systematic review, 89% showed that people had inadequate knowledge about health or social decisions and 24% showed that people had unrealistic expectations, which could be attributed, in part, to lack of access to information.³⁹ A study on shared decision-making found that about one-third of people with newly diagnosed hematologic malignancies and their caregivers were not satisfied with the information they had been provided.³⁸

Findings in 6 studies included in our meta-aggregation convey that regardless of the format of the PtDA, patients with breast, colorectal, and prostate cancer reported a better understanding of their cancer, treatment options, and the associated benefits and risks.^{15,23–25,31,32} Patients with breast cancer in 2 included studies perceived that their comprehension was specifically enhanced with the use of pictures, statistics, and/or graphs.^24,25 Additionally, given that some people with solid tumors are unable to accumulate information in a short period of time on their own according to one included study,³⁵ access to PtDAs can offer a timely and reliable source of necessary information. In another included study, patients with prostate cancer reported that reading PtDAs before a consultation enabled them to process information and disentangle their thoughts.³⁰

In terms of values and preferences, a systematic review regarding people’s decisional needs for making health decisions reported that in 7 of 45 studies, 21% of patients were unclear about their values.³⁹ In our 5 included studies, patients with breast, colorectal, prostate, lung, and advanced cancer reported being able to successfully clarify their values and preferences given the wealth of PtDAs that include a values exercise, thus leading to less decisional conflict.^{25,31,32,35,36} Individual differences in knowledge and preferences toward treatment decisions highlight the importance of PtDA assessment to ensure that it can meet the needs of both patients and their family caregivers, which in turn will improve decisional outcomes.

The ODSF also identified patients’ inadequate emotional support as a decisional need.¹⁰ This need can be met by using PtDAs. Our synthesized finding showed that PtDAs served as a platform for patients to express their emotions and concerns. Patients newly diagnosed with prostate cancer who read PtDAs reported that they were encouraged to express their worries and questions, and they had used the PtDAs to share their worries and concerns and ask questions during consultations in one study.⁴⁰ This created opportunities for health care providers to tailor person-centered care to the individual’s decisional needs. In 3 included studies, the authors found that providers who engaged in communication about emotional needs could provide immediate service to address the patient’s concerns by making a referral or answering questions.^28,30,35 These patients with breast, prostate, and lung cancer reported that this patient-centered decision support from health care providers helped them to cope better with their decisions and associated anxiety and fear. Further, the use of PtDAs followed by patient-centered decision support was reported to be helpful in establishing rapport between patients with prostate cancer and health care providers, which helped the patients feel reassured in one included study.³⁰ Considering that patient trust in health care providers is an essential component of the SDM process,⁴¹ PtDAs could supplement professional consultation and be used to reduce patients’ anxieties and negative emotions regarding their breast and colorectal cancers according to findings in three included studies.^24,25,32

In addition to improving relationships between patients and health care providers, PtDAs were also perceived as fostering better relationships between patients and their family caregivers. In one included study, the value exercises embedded in the PtDA allowed patients with breast, prostate, and lung cancers and their family caregivers to better understand each other.³⁵ In this way, PtDAs served as a vital support for both parties. Family caregivers of patients with advanced cancer have been found to play various roles in the health care decision-making process—from information seeker to shared understanding facilitator, decision point originator, values and illness framer discussant, “what if” scenario poser, collateral decisions manager, and delegated decision maker.⁴² Given the distinct decisional needs among all parties, patients with breast cancer and other solid tumors reported using PtDAs to invite their family caregivers to be part of the discussion about treatment and to provide input in the decision-making process in two included studies.^25,35 We found that PtDAs in 2 included studies facilitated greater involvement of family caregivers in the decision-making process for breast, prostate, and lung cancer treatment with patients.^25,35

Finally, our synthesized finding show that patients may use PtDAs to help them evaluate how they reached their decisions and determine if changes are needed. This evaluation was shown to enhance the confidence of patients with breast and prostate cancer in their decisions in two included studies.^24,30 A meta-analysis revealed that PtDAs based on the ODSF could not significantly reduce patients’ uncertainty immediately after exposure to the ODSF-developed PtDAs.⁴³ Our findings, however, show that a case study of one patient with breast cancer reported she had referred back to the material provided in the PtDA one month after her consultation to review the treatment plan and her reasoning behind the decision.²² Owing to the various time points used in each included study to assess the effects of PtDAs on decision needs, additional qualitative studies will be required to obtain a more accurate picture of how—and when—patients use PtDAs to evaluate their decisions.

It is imperative to point out that despite the patient-perceived benefits of PtDAs, an inappropriate structure or content in a PtDA can render it less valuable. We found that some patients had negative experiences with the PtDA information provided and the SDM process. In one included study of women with breast cancer, PtDAs were considered either unclear or optimistic about side effects.²⁶ It is important to note that PtDAs are not stand-alone or substitutes for a consultation with a health care provider; rather, they need to be embedded in a clinical encounter as recommended in one included study of men with prostate cancer.¹⁵ Further, examining the inputs required to make PtDAs available to patients (such as the expertise and time spent in PtDA development and implementation) and exploring the time trade-offs of reviewing PtDAs with patients would be helpful in obtaining a comprehensive picture of the patients’ perceived benefits of PtDAs.

Limitations

Several limitations are inherent in this review. We only included studies published in English in the 4 selected databases, so there is a possibility we missed relevant studies. In addition, the sample size of the included studies had a small number of participants. The synthesized findings presented here are intended to provide an in-depth understanding of patients’ experiences with PtDAs for first-line cancer treatment, not for other types of health care-related decisions. We intended to examine fully developed PtDAs as well; however, the available studies of fully developed PtDAs provided only quantitative data, which did not meet our inclusion criteria. All studies included in this meta-aggregation were of PtDAs in an early stage of development and for common cancers, thus no clinical trials were included to demonstrate the effects of PtDA use on treatment decisions using qualitative data. Finally, we did not extract findings from studies that only reported patients’ illustrations with little interpretation. Due to these various limitations, our results should be interpreted with caution.

Implications for Future Research

Certain key findings from this meta-aggregation can inform future research. Health care providers and researchers can use the ODSF to guide the development of a PtDA.⁹ Assessing patients’ decisional needs through tools, such as the workbook “Decisional Needs Assessment in Populations”,⁴⁴ should be completed throughout the development of a PtDA to examine patients’ knowledge, values, personal needs, and resources available to make their decisions.¹⁰ Few studies included in this review reported that a patient decisional needs assessment was conducted to determine the content of the PtDA. Considering that patients have been found to perceive PtDAs to be a beneficial decisional support aid in enhancing their understanding and enabling them to verbalize their concerns about first-line treatment, we suggest assessing patients’ decisional needs during the development of a prototype of the PtDAs prior to the SDM process, and prior to providing decision-support interventions including PtDAs.^8,10 This approach could better help patients and family caregivers make preference-sensitive decisions during the SDM process.

PtDAs have the potential to supply heath care providers along the care pathway with structured information. Based on our findings, PtDAs were perceived by patients with cancer to be beneficial for first-line treatment decision making when they had a structured format with clear sections and headings. Balancing complex and complete treatment information with simple language and illustrations, graphs, or pie charts is key to enhancing comprehension. For instance, presenting the pros and cons of treatment options in a table rather than in narrative paragraphs was perceived as beneficial by patients in some of our included studies.

Implications for Nursing Practice

Our study findings indicated that access to PtDAs before meeting with a health care provider and after receiving a clinical cancer diagnosis was perceived to be beneficial by patients considering frontline treatment options. Thus, integrating PtDAs into care could enhance patient satisfaction with professional consultations and the SDM process. Given that nurses are at the forefront of supporting patients with cancer and PtDAs can serve as a platform to discuss patient-specific concerns, nurses should use the five steps of the SDM process suggested by the AHRQ to guide patients throughout their decision-making process.⁸ Values clarification exercises should be included in the SDM process to help patients clarify their own values and preferences. The exercises will also facilitate the engagement of family caregivers given their vital role in the health care decision-making process with patients.

As part of a decisional support intervention, some included studies had either a navigator or nurse to review the PtDA with patients to help them formulate questions, and the patients reported appreciation for this help. Thus, to maximize the intended benefits of PtDAs, it is crucial to pair patients and family caregivers with nurses who can facilitate timely assessments and interventions and evaluate whether patients’ decision needs are being met.

Conclusions

This meta-aggregation of 16 studies investigating the use of PtDA for frontline decision making by patients with various cancers demonstrated the patient-perceived benefits of PtDA, and aspects of PtDAs that patients found helpful or unhelpful. This article provides practical guidance on the process of developing PtDAs to help facilitate SDM for patients with cancer facing frontline treatment decisions, family caregivers, and health care providers including nurses. The synthesized findings in this study highlight how PtDAs address the informational and emotional needs of patients with cancer throughout their decision-making process regarding cancer treatment. Nurses may offer values clarification exercises and provide adequate PtDAs before patients’ consultations to ensure patients’ decisions align with their values and preferences. The involvement of nurses in patients’ decision-making process for complex cancer treatment, along with the use of PtDAs, can meet the decisional needs of patients and improve their decisional outcomes.

Implications for Practice:

Nurses play a crucial role in supporting patients and family caregivers throughout the decision-making process for cancer treatment. PtDAs that balance complex treatment information with simple language and illustrations or graphs can enhance patients’ comprehension. The integration of values clarification exercises into care can further improve patients’ decisional outcomes.