This survey explored how patients with psoriasis become aware of biologics, the barriers they face in obtaining these medications, their compliance, and their perceptions towards efficacy and potential adverse effects. The majority of the respondents with psoriasis had learned of biologic medications from their physicians, rather than from family or friends, or from advertisements. This suggests that physicians and other medical providers are the primary source of providing awareness about treatment options. It highlights the importance of offering these medications to patients who can benefit from these treatments, and to discuss the risks and benefits. Our study found that patients further researched biologic medications using the Internet as a tool. Therefore, it may be beneficial for dermatologists to provide patients with reliable online sources to obtain information on these medications, as patients are currently using this medium to obtain much of their information.
Most respondents found the decision to start a biologic medication “easy” or “moderate.” Even though these medications are more complex than prior treatments, if patients receive thorough information regarding these medications, the decision to start the medication may become easier. It should be noted, however, that this survey targeted individuals who had chosen to start a biologic medication and did not include those who learned about biologics and declined to use them. This may self-select for a population who had an easier time making this decision.
The majority of respondents had high expectations regarding improvement prior to starting biologics, and reported even higher satisfaction rates than expected after initiating therapy. The fact that patients tended to underestimate the degree of improvement on biologics suggest that perhaps the treating physicians undersold the potential benefits of biologics, or that patients may have downgraded their expectations due to previous treatment failures or the chronic severity of their disease. Overall, the majority of respondents were very satisfied with biologics. This is consistent with previous studies that had reported high satisfaction rates amongst patients using biologic therapies(10
). Thus, physicians should not hesitate to tell patients who are considering starting biologics that despite the risks of adverse effects or not responding to these medications, the great majority of patients on biologics are satisfied with their treatment.
Obtaining biologic medications was “not difficult” to “minimally difficult” for the majority of respondents. The majority had received their biologic medication within one month of the time the prescription was written. The most common difficulties encountered included problems with insurance companies and with the pharmacy filling the prescription. It must be noted that our center is specialized in the treatment of psoriasis, and there is dedicated staff devoted to advocating for patients and following up with insurance companies and pharmacy issues, which were the main two challenges faced by patients. Obtaining insurance approval for a patient for a biologic medication, and the logistics of obtaining the medication after approval can be challenging, and a knowledgeable support staff is imperative in helping with this process, especially in populations that have the most difficulty obtaining these medications. We found that the populations that had the most difficulty in obtaining biologics included younger patients (less than 55 years old), patients with lower income, and patients with no insurance. Because our data were anonymized, we were unable to explore the hypotheses that the association with younger age was due to those age 65 and older having Medicare coverage, and that the association with lower income was due to a less favorable insurance plan.
Our patient population had significant experience with biologic medications, with more than half having used more than one biologic. This patient population had very good compliance with biologic medications with the majority of patients reporting “never” or “rarely” missing a dose. The main reason for missing a dose of medication was running out of medication. This can be avoided with proper scheduling of patient visits and advance renewal of prescriptions. Other reasons stated for missing a dose included forgetting to take the medication, followed by difficult transport of medications due to vacations and travel. Since biologic medications consist of needle syringes and also require refrigeration, storage and transport of these medications is difficult while traveling. If patients wish to fly with these medications, storage in a hard-shell container with a cool pack and physician’s explanatory note is recommended. Other options include directly shipping the medication to the travel destination. Notably, only a small percentage of respondents cited depression and concerns about side effect as reasons for missing a dose of a biologic. This is in contrast to studies conducted with other therapies including topical and systemic therapies in which patient frustration and other psychosocial factors had significant influence on compliance(12
Overall, respondents were not worried at all or minimally worried about possible adverse effects from their biologic medications. We explored whether certain demographic variables were associated with worrying about side effects and found a trend toward association with female gender, but not with number of educational sources consulted or education level.
Biologic medications are expensive as compared to previous psoriasis treatments(13
). Studies have looked at populations who receive biologic medications and this population usually has a higher income level, and increased insurance coverage(16
). The results of this survey were consistent with this finding as previously stated in the demographics the majority of patients in this study had higher incomes, were highly educated, and had health insurance coverage. The majority of our respondents stated that co-payments associated with biologic medications had not caused them to cut back on other personal or household expenses. As would be expected, respondents with higher income levels did not need to cut back on household expenses due to co-pays for biologic medications.
The majority of our respondents had never contacted the pharmaceutical companies that make their biologic medication, and the majority of respondents had a neutral opinion of the pharmaceutical companies. Of the minority who had contacted the pharmaceuticals the opinions were evenly split between dissatisfaction and satisfaction.
First, since the response rate to our survey was 51.2%, there may have been a selection bias in those who chose to respond to the survey. These individuals might be more motivated to share their experiences with biologics due to good or bad experiences, be more educated, or be more facile with the Internet for those who chose to respond online. Second, the data from this survey was self-reported by respondents and is thus subject to recall bias. Third, our survey was administered to patients at a single site. The demographics of the population were such that the majority of respondents lived in an urban area, were highly educated, with increased income levels, and had health insurance. Results from this population may underestimate the burden of financial considerations regarding biologic medications. Finally, the survey was administered to patients who had received care at the UCSF Psoriasis Center. This is an academic center specializing in psoriasis, and there is dedicated staff to assist in the process of obtaining approval and renewals for biologic medications. Thus, the results of this study may not be generalizable non-academic sites or practices that do not have the same level of staff support.