Shared Decision-Making and Information Needs among People with Generalized Anxiety Disorder

Abstract

Shared decision making (SDM) aims to involve patients in the decisions about their care, considering their preferences, values and concerns about the different treatment options. However, research shows that people with mental health problems have considerable unmet information needs about their condition. This community-based cross-sectional study explores the SDM process and information needs among people with Generalized Anxiety Disorder (GAD), as an initial step in the design and development of a Patient Decision Aid for this population. Seventy participants completed an online survey with the Control Preference Scale, and questions about the perceived difficulty of past treatment decisions and the use of the Internet for searching for GAD-related information. Most participants preferred an active (42.9%) or collaborative role (41.4%) in the SDM process, and 53% did not perceive their preferred role. Information provided by healthcare professionals was considered insufficient by 28% of the sample, and over 30% reported using the Internet to look for GAD-related information at least once a week or more. The most relevant GAD-related information needs were general information (71.4%), information on self-help groups (65.7%), recommendations on how to face this disorder (61.4%) and information on treatment options (50%). Exploratory analyses showed that patients who perceived an active participation were more likely to search for information frequently (p = 0.038), and those who felt more involved than desired tended to search for more themes (p = 0.049). In summary, the study showed that a considerable percentage of GAD patients have unmet needs related to decision-making participation and information.

Decision aids linked to the recommendations in clinical practice guidelines: results of the acceptability of a decision aid for patients with generalized anxiety disorder

“…The first PtDA version was developed according to: (1) the scientific evidence extracted from the CPG, including information about the disorder and its pharmacological and psychological treatments, and (2) the information obtained in the three studies carried out to assess patients’ experiences and preferences [ 19 , 33 , 34 ]. This version was reviewed by the Project Management Group and Stakeholder consultation group, that provided feedback through an iterative process.…”

“…Seeking information about the causes of illness and available treatments is a common aspect in chronic mental illnesses, such as in bipolar disorder [ 41 ], mood disorders [ 42 ], and specifically in GAD [ 19 ]. The results of the present study continue to reinforce what has been found in the literature thus far, with 72.8% of the participants stating that the PtDA was helpful in terms of learning.…”

“…However, patient participation in research and development of PtDAs is almost absent in GAD. The authors have previously shown in a small sample that most GAD patients prefer an active or collaborative role in decision making, and only about half see their preferences fulfilled [ 19 ]. The present PtDA aims to help fill this gap, promoting patients’ knowledge and discussion with their healthcare providers.…”

“…The empirical evidence on the efficacy and safety of pharmacological and psychological treatment for GAD was previously identified and synthetized as part of the update process of a CPG financed by the Spanish Ministry of Health [ 29 ], following the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology [ 32 ]. In addition, we carried out three different studies to explore the experiences, perceptions, preferences and information needs of GAD patients regarding the disease, their health care and available treatments: (1) a scoping review of qualitative studies [ 33 ]; (2) individual interviews with 8 GAD patients [ 34 ]; (3) a cross-sectional survey study with 70 GAD patients[ 19 ]. The results of this research were used to inform the PtDA content.…”

“…From a theoretical perspective, GAD specific characteristics such as persistent worry or intolerance to uncertainty could act like barriers to assume the responsibility of a greater involvement in the decision process [ 17 , 18 ]. However, a recent study carried out by our team showed that 84.3% of GAD patients preferred an active or collaborative role in decision-making, although one third of the sample perceived more involvement than they desired [ 19 ]. These results reinforces the need to adequately assess patients’ preferences and perceptions of involvement, and to assure that decision-making is really collaborative for those who prefer it and does not impose them excessive responsibility.…”