Acceptable risks of treatments to prevent rheumatoid arthritis among first-degree relatives: demographic and psychological predictors of risk tolerance

Abstract

ObjectivesTo quantify tolerance to risks of preventive treatments among first-degree relatives (FDRs) of patients with rheumatoid arthritis (RA).MethodsPreventive treatments for RA are under investigation. In a preference survey, adult FDRs assumed a 60% chance of developing RA within 2 years and made choices between no treatment and hypothetical preventive treatment options with a fixed level of benefit (reduction in chance of developing RA from 60% to 20%) and varying levels of risks. Using a probabilistic threshold technique, each risk was increased or decreased until participants switched their choice. Perceived risk of RA, health literacy, numeracy, Brief Illness Perception Questionnaire and Beliefs about Medicines Questionnaire-General were also assessed. Maximum acceptable risk (MAR) was summarised using descriptive statistics. Associations between MARs and participants’ characteristics were assessed using interval regression with effects coding.Results289 FDRs (80 male) responded. The mean MAR for a 40% reduction in chance of developing RA was 29.08% risk of mild side effects, 9.09% risk of serious infection and 0.85% risk of a serious side effect. Participants aged over 60 years were less tolerant of serious infection risk (mean MAR ±2.06%) than younger participants. Risk of mild side effects was less acceptable to participants who perceived higher likelihood of developing RA (mean MAR ±3.34%) and more acceptable to those believing that if they developed RA it would last for a long time (mean MAR ±4.44%).ConclusionsAge, perceived chance of developing RA and perceived duration of RA were associated with tolerance to some risks of preventive RA therapy.

Patient Preferences for Lung Cancer Interception Therapy

“…Respondents more likely to choose the no-treatment option also agreed less with the statement that smoking causes lung cancer and were less sure of their personal risk compared with an average person who smokes. Similar to our findings, Simons et al found that approximately 14% of respondents would likely choose no treatment when presented with a hypothetical preventive rheumatoid arthritis treatment and that preferences for no treatment were associated with lower perceived chance of developing the disease. Future qualitative research should explore the reasoning behind opting out of preventive care to better understand these preferences.…”

“…Respondents more likely to choose the no-treatment option also agreed less with the statement that smoking causes lung cancer and were less sure of their personal risk compared with an average person who smokes. Similar to our findings, Simons et al 16 found that approximately 14% of respondents would h Reference group is those who believe their self-risk of getting lung cancer without treatment is the same as the average person who smokes in the US.…”

“…Liede et al 15 found that women with BRCA1 or BRCA2 variants were willing to accept risk of developing secondary uterine cancer to reduce their chance of developing breast cancer. Simons et al 16 found that respondents were generally willing to tolerate some risk of serious AEs (eg, brain inflammation, lymphoma, or retinopathy) to reduce the risk of developing rheumatoid arthritis, although this willingness diminished as treatment efficacy was reduced and the risks increased. Minnis et al 17 found that both efficacy and product characteristics affected choice of human immunodeficiency virus prevention products among young women in Kenya and South Africa.…”

“The power imbalance was blown out the window”: developing and implementing creative workshops to enhance communication of statistics in patient and public involvement in clinical trials

“…This would mean the outputs can be reused to raise awareness about treatment important differences and their potential impact in treatments available to patients. Final workshop participants had a range of numeracy levels, and their average was in line with other general population groups [ 30 ], however we had a lower proportion of participants with low numeracy when compared with general research participants [ 31 , 32 ]. Given art-based methods such as the creative workshops are expected to make research topics more accessible [ 12 ], future work should focus on recruiting a larger proportion of participants with low numeracy levels and explore the role and impact creative workshops can have on their involvement in numerical aspects of research.…”