Spontaneous mental associations with the words “side effect”: Implications for informed and shared decision making

Abstract

Objective To gain insight into patients’ medical decisions by exploring the content of laypeople’s spontaneous mental associations with the term “side effect.” Methods An online cross-sectional survey asked 144 women aged 40–74, “What are the first three things you think of when you hear the words ‘side effect?’” Data were analyzed using content analysis, chi-square, and Fisher’s exact tests. Results 17 codes emerged and were grouped into 4 themes and a Miscellaneous category: Health Problems (70.8% of participants), Decision-Relevant Evaluations (52.8%), Negative Affect (30.6%), Practical Considerations (18.1%) and Miscellaneous (9.7%). The 4 most frequently identified codes were: Evaluating Risks (36.1%), Health Problems-Specific Symptoms (35.4%), Health Problems-General Terms (32.6%), and Negative Affect-Strong (19.4%). Code and theme frequencies were generally similar across demographic groups (ps>0.05). Conclusion The term “side effect” spontaneously elicited comments related to identifying health problems and expressing negative emotions. This might explain why the mere possibility of side effects triggers negative affect for people making medical decisions. Some respondents also mentioned decision-relevant evaluations and practical considerations in response to side effects. Practice Implications Addressing commonly-held associations and acknowledging negative affects provoked by side effects are first steps healthcare providers can take towards improving informed and shared patient decision making.

Making decisions about antipsychotics: a qualitative study of patient experience and the development of a decision aid

“…Positive experiences also seem to be a contributing factor in decision making, though to a lesser extent. This is consistent with findings by Izadi and colleagues [45] which suggest that patient decision making may be driven by both affective processes and arguments presented by the psychiatrist, notwithstanding the fact that patients also seek information on the positive and negative effects of antipsychotic medication from multiple sources, in order to arrive at a decision [30]. Our study found that negative experiences with medication were more prominent among responses than positive ones, and these experiences tend to stay with the patient over many years and affect future decision making.…”

Pilot study of decision support tools on breast cancer chemoprevention for high-risk women and healthcare providers in the primary care setting

“…It has been proposed that the side effect profile of chemoprevention medications, coupled with wide-ranging concerns about the emotional impact of taking a medication, leads to medication avoidance. Specifically, women might decide to avoid chemoprevention because of the affect-laden responses associated with the term “side effect” and their belief that these medications will increase, rather than decrease, their level of health-related stress [39]. [40–42] Concerns about possible side effects, such as uterine cancer, thromboembolism, and menopausal symptoms, are the primary reasons why women are reluctant to start breast cancer chemoprevention [43–49].…”

Biopsychosocial and clinical characteristics in patients with resected breast and colon cancer at the beginning and end of adjuvant treatment

“…Patients come in with progressive clinical improvement and are generally aware of their diagnosis, although it has usually been expressed in terms of high curative possibility [1]. It falls to the oncologist to open a probabilistic scenario in which both risks and benefits must be calculated and prognostic uncertainty, side effects, and actual benefit for each individual patient [2] described.…”

“…Medical oncologists believe that coping style is highly pertinent to making decisions about adjuvant treatment or active follow-up, dealing with treatment side effects, and the anxiety caused by prognostic uncertainty [2]. Likewise, it is commonly felt that treatment decision and probably tolerance are influenced by physician-patient rapport, by how information is communicated, and by patients’ interpretation of what they are told [3].…”