Values clarification in a decision aid about fertility preservation: does it add to information provision?

Background We aimed to evaluate the effect of a decision aid (DA) with information only compared to a DA with values clarification exercise (VCE), and to study the role of personality and information seeking style in DA-use, decisional conflict (DC) and knowledge. Methods Two scenario-based experiments were conducted with two different groups of healthy female participants. Dependent measures were: DC, knowledge, and DA-use (time spent, pages viewed, VCE used). Respondents were randomized between a DA with information only (VCE-) and a DA with information plus a VCE(VCE+) (experiment 1), or between information only (VCE-), information plus VCE without referral to VCE(VCE+), and information plus a VCE with specific referral to the VCE, requesting participants to use the VCE(VCE++) (experiment 2). In experiment 2 we additionally measured personality (neuroticism/conscientiousness) and information seeking style (monitoring/blunting). Results Experiment 1. There were no differences in DC, knowledge or DA-use between VCE- (n=70) and VCE+ (n=70). Both DAs lead to a mean gain in knowledge from 39% at baseline to 73% after viewing the DA. Within VCE+, VCE-users (n=32, 46%) reported less DC compared to non-users. Since there was no difference in DC between VCE- and VCE+, this is likely an effect of VCE-use in a self-selected group, and not of the VCE per se. Experiment 2. There were no differences in DC or knowledge between VCE- (n=65), VCE+ (n=66), VCE++ (n=66). In all groups, knowledge increased on average from 42% at baseline to 72% after viewing the DA. Blunters viewed fewer DA-pages (R=0.38, p<.001). More neurotic women were less certain (R=0.18, p<.01) and felt less supported in decision making (R=0.15, p<.05); conscientious women felt more certain (R=-0.15, p<.05) and had more knowledge after viewing the DA (R=0.15, p<.05). Conclusions Both DAs lead to increased knowledge in healthy populations making hypothetical decisions, and use of the VCE did not improve knowledge or DC. Personality characteristics were associated to some extent with DA-use, information seeking styles with aspects of DC. More research is needed to make clear recommendations regarding the need for tailoring of information provision to personality characteristics, and to assess the effect of VCE use in actual patients

Are publicly available internet resources enabling women to make informed fertility preservation decisions before starting cancer treatment: an environmental scan?

Background To identify publicly available internet resources and assess their likelihood to support women making informed decisions about, and between, fertility preservation procedures before starting their cancer treatment. Methods A survey of publically available internet resources utilising an environmental scan method. Inclusion criteria were applied to hits from searches of three data sources (November 2015; repeated June 2017): Google (Chrome) for patient resources; repositories for clinical guidelines and projects; distribution email lists to contact patient decision aid experts. The Data Extraction Sheet applied to eligible resources elicited: resource characteristics; informed and shared decision making components; engagement health services. Results Four thousand eight hundred fifty one records were identified; 24 patient resources and 0 clinical guidelines met scan inclusion criteria. Most resources aimed to inform women with cancer about fertility preservation procedures and infertility treatment options, but not decision making between options. There was a lack of consistency about how health conditions, decision problems and treatment options were described, and resources were difficult to understand. Conclusions Unless developed as part of a patient decision aid project, resources did not include components to support proactively women’s fertility preservation decisions. Current guidelines help people deliver information relevant to treatment options within a single disease pathway; we identified five additional components for patient decision aid checklists to support more effectively people’s treatment decision making across health pathways, linking current with future health problems

Decisional Conflict Scale Findings among Patients and Surrogates Making Health Decisions: Part II of an Anniversary Review

Background. We explored decisional conflict as measured with the 16-item Decisional Conflict Scale (DCS) and how it varies across clinical situations, decision types, and exposure to decision support interventions (DESIs). Methods. An exhaustive scoping review was conducted using backward citation searches and keyword searches. Eligible studies were published between 1995 and March 2015, used an original experimental/observational research design, concerned a health-related decision, and provided DCS data. Dyads independently screened titles/abstracts and full texts, and extracted data. We performed narrative syntheses and calculated average or median DCS scores. Results. We included 246 articles reporting on 253 studies. DCS scores ranged from 2.4 to 89.6 out of 100. Highest baseline DCS scores were for care planning (30.5 ± 12.8, median = 30.9) and treatment decisions (30.5 ± 14.6, median = 28.0), in contexts of primary care (33.8 ± 19.8), obstetrics/gynecology (28.8 ± 10.4), and geriatrics (32.6 ± 10.7). Baseline scores were high among decision makers who were ill (29.5 ± 13.8, median = 27.2) or making decisions for themselves (29.7 ± 14.8, median = 26.9). Total DCS scores 37.4). After DESI use, DCS scores decreased short-term but increased or remained the same long-term (>6 months). Conclusions. DCS scores were highest at baseline and decreased after decision making. DESIs decreased decisional conflict immediately after decision making. The largest improvements after DESIs were in decision makers who were ill, male, or made decisions for themselves. Meta-analyses focusing on decision types, contexts, and interventions could inform hypotheses about the expected effects of DESIs, the best timing for measurement, and interpretation of DCS scores

Decisional Conflict Scale Use over 20 Years: The Anniversary Review

Background. The Decisional Conflict Scale (DCS) measures 5 dimensions of decision making (feeling: uncertain, uninformed, unclear about values, unsupported; ineffective decision making). We examined the use of the DCS over its initial 20 years (1995 to 2015). Methods. We conducted a scoping review with backward citation search in Google Analytics/Web of Science/PubMed, followed by keyword searches in Cochrane Library, PubMed, Ovid MEDLINE, EMBASE, CINAHL, AMED, PsycINFO, PRO-Quest, and Web of Science. Eligible studies were published between 1995 and March 2015, used an original experimental/observational research design, concerned a health-related decision, and provided DCS data (total/subscales). Author dyads independently screened titles, abstracts, full texts, and extracted data. We performed narrative data synthesis. Results. We included 394 articles. DCS use appeared to increase over time. Three hundred nine studies (76%) used the original DCS, and 29 (7%) used subscales only. Most studies used the DCS to evaluate the impact of decision support interventions (n = 238, 59%). The DCS was translated into 13 languages. Most decisions were made by people for themselves (n = 353, 87%), about treatment (n = 225, 55%), or testing (n = 91, 23%). The most common decision contexts were oncology (n = 113, 28%) and primary care (n = 82, 20%). Conclusions. This is the first study to descriptively synthesize characteristics of DCS data. Use of the DCS as an outcome measure for health decision interventions has increased over its 20-year existence, demonstrating its relevance as a decision-making evaluation measure. Most studies failed to report when decisional conflict was measured during the decision-making process, making scores difficult to interpret. Findings from this study will be used to update the DCS user manual