Impact of Cancer-Related Decision Aids

Objectives:

Decision aids have been developed to improve communication between health professionals and patients, and to help involve patients in health care decisions. The area of cancer-related decisions has been found to be particularly problematic with respect to health professional-patient communication and decisionmaking for a number of reasons, including difficulties in communicating information about poor prognoses and modest benefits of treatments used. The objectives of this review were to describe the different cancer-related decision aids (DAs) that have been developed and to evaluate the effectiveness of these interventions.

Search Strategy:

Studies were identified by searching MEDLINE (1977 to April 2001), HEALTHstar, Cancerlit, Cinahl, Sociological Abstracts, PsycINFO (1977 to August 2000), and EMBASE (1995 to August 2000); the Cochrane Library (issue 3, 2000), reference lists of included studies, and personal files of experts. The main search terms were decisionmaking; decision analysis; patient education; patient participation; and neoplasms.

Selection Criteria:

Primary studies about prevention, screening, and treatment decisionmaking focused on cancer that met the definition of a decision aid were included. Exclusion criteria were studies of benign prostatic hyperplasia, hormone replacement therapy, and smoking cessation as well as unpublished studies or those published as abstracts only.

Data Collection and Analysis:

Two reviewers independently extracted data, including methodological quality items for all studies. Disagreements were resolved by consensus. Descriptive statistics were calculated for all fields of the database. Evidence tables were constructed to describe the most salient features of the studies according to the review questions. Data were not pooled, because clinical heterogeneity existed across the studies (different types of cancer, diverse range of decisions: prevention, screening, treatment, and different study designs), outcomes measurements were inconsistent, and, overall, the studies had low methodological quality scores.

Main Results:

> 61 unique studies (including 18 randomized controlled trials, 5 nonrandomized controlled trials, as well as other study designs) were included after all screening processes were completed.

22 studies examined the development process of the DAs. In general, all studies had the same phases: assessment of construct validity and reliability in noncancer participants, followed by field-testing in cancer survivors in some studies. The majority (14/22, 64%) studied breast cancer treatment decisions.

The effectiveness of the DA was assessed in 39 studies; only 16 were randomized controlled trials (RCTs). Various DAs or a combination of strategies were evaluated: brochures, audiotapes, videotapes, interactive computer programs, educational scripts, decision boards, counseling, and informal decision analysis. Breast (23) and prostate cancer (11) were the most frequent types of cancer.

Across the studies, patients' decisions, knowledge, anxiety, depression, satisfaction, and acceptability of the DA were the most frequent outcome measures evaluated.

Overall, among RCTs, DAs appeared to increase knowledge and patient involvement in decisionmaking. Anxiety and depression scores appeared not to be increased by the DA. In patients making prostate cancer screening decisions, significantly fewer men decided to proceed with screening after receiving a DA.

Conclusions:

Our results support that decision aids are helpful for some cancer screening decisions. In these situations, DAs can increase knowledge, do not increase anxiety, and, in some circumstances, can influence the decision made. In contrast, there is very little data available evaluating decision aids for cancer-treatment-related decisions, and further evidence is still needed. The early stage of development of this field and the gaps in our knowledge determined by this systematic review underline the need for further research. A number of different areas were identified, such as developing a better understanding of how and when decisionmaking occurs; who is involved (clinician, patient, or others); and the extent of their involvement. The key features of quality decisionmaking need to be determined from patients and clinicians to help investigators develop appropriate interventions and to identify and prioritize outcome measures of effectiveness. Multicenter collaboration to formally set a research agenda is needed because integration of different research efforts in the field appears to be suboptimal. National or international collaboration would permit development of consensus about important basic concepts regarding decisionmaking, decision aids, and important outcomes.