Information and decision-making needs among people with affective disorders – results of an online survey

Abstract

BackgroundPatient decision aids are one possibility for enabling and encouraging patients to participate in medical decisions.ObjectiveThis paper aims to describe patients’ information and decision-making needs as a prerequisite for the development of high-quality, web-based patient decision aids for affective disorders.DesignWe conducted an online cross-sectional survey by using a self-administered questionnaire including items on Internet use, online health information needs, role in decision making, and important treatment decisions, performing descriptive and comparative statistical analyses.ParticipantsA total of 210 people with bipolar disorder/mania as well as 112 people with unipolar depression participated in the survey.ResultsBoth groups specified general information search as their most relevant information need and decisions on treatment setting (inpatient or outpatient) as well as decisions on pharmacological treatment as the most difficult treatment decisions. For participants with unipolar depression, decisions concerning psychotherapeutic treatment were also especially difficult. Most participants of both groups preferred shared decisions but experienced less shared decisions than desired.Discussion and conclusionOur results show the importance of information for patients with affective disorders, with a focus on pharmacological treatment and on the different treatment settings, and highlight patients’ requirements to be involved in the decision-making process. Since our sample reported a chronic course of disease, we do not know if our results are applicable for newly diagnosed patients. Further studies should consider how the reported needs could be addressed in health care practice.

Perceptions of shared decision‐making in severe mental illness: An integrative review

“…Three interesting categories ‘being the underdog’, ‘being controlled’, ‘being omitted’ described consumers’ experiences of involvement (Dahlqvist Jönsson et al, ). Most consumers experienced lower involvement than they expected (De las Cuevas, Peñate, et al, ; Liebherz et al, ). Additionally, consumers also felt excluded from decisions about their physical health which they considered as important as mental health (Ehrlich & Dannapfel, ; Small et al, ).…”

“…the diagnosis of illness) (De las Cuevas & Peñate, ; De las Cuevas, Peñate, et al, ; Park et al, ). In studies reporting SDM as a single dimensional concept, most consumers preferred SDM, and a minority of them preferred passive involvement (Cosh et al, ; De las Cuevas & Peñate, ; De las Cuevas, Peñate, et al, ; Ehrlich & Dannapfel, ; Liebherz et al, ; Nott, Mcintosh, Taube, & Taylor, ). Specifically, three articles reported that consumers also preferred shared involvement in physical health (Ehrlich & Dannapfel, ; Small et al, ; Wright‐Berryman & Kim, ; Wright‐Berryman & Cremering ).…”

“…Four studies found that more than 60% of participants reported that they had experienced a shared or active approach to decision‐making (Cosh et al, ; De las Cuevas, De Rivera et al, ; Liebherz et al, ; Nott et al, ). However, most studies indicated that SDM was not common (Dahlqvist Jönsson et al, , De las Cuevas & Peñate, , Ehrlich & Dannapfel, , Fukui et al, , Grim et al, , Liebherz, Tlach, Härter, & Dirmaier, , Matthias, Salyers, Rollins, & Frankel, , Salyers et al , Stacey et al, , Souraya et al, , Velligan et al, , Younas et al, ). An observational study showed that consumers felt more involved in the consultation than was observed (Verwijmeren & Grootens, ).…”

“…The healthcare system (meso and macro) level Ehrlich & Dannapfel, 2017;Liebherz et al, 2015;Nott, Mcintosh, Taube, & Taylor, 2018). Specifically, three articles reported that consumers also preferred shared involvement in physical health (Ehrlich & Dannapfel, 2017;Small et al, 2017;Wright-Berryman & Kim, 2016;Wright-Berryman & Cremering 2017).…”

Women's decision making about antidepressant use during pregnancy: A narrative review

“…Many treatments for depression have demonstrated efficacy, including medications, psychotherapy, electroconvulsive therapy, deep brain stimulation, and complementary and alternative medicine options. Individuals living with depression have rated decisions about medication use as one of the top three most difficult treatment decisions they make (Liebherz, Tlach, Härter, & Dirmaier, ).…”