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Table 3 Patient survey—additional comments

From: Clinician and patient views on janus kinase inhibitors in the treatment of inflammatory arthritis: a mixed methods study

Themes

Illustrative quotes

For patients currently on a biologic:

Perceptions about biologics

“Cannot understand why something that has worked for years [etanercept], suddenly stops doing.”—Patient 58 (RA, North West England)

“Worried about vaccine [COVID] effectiveness as on rituximab.”—Patient 52 (RA, Greater London)

Access to and knowledge about JAKi

“CCG [Clinical Commissioning Group in England] refused JAK inhibitor funding request and instead approved injected biologic…”—Patient 59 (PsA, Greater London)

“Definitely more [patient] education needed on JAK inhibitors…I feel ignorant of their efficacy and potential.”—Patient 128 (PsA, East of England)

Concerns about JAKi

“I am concerned about the side effects of JAK inhibitors, I’ve seen that the FDA [U.S. Food and Drug Administration] is concerned about JAK inhibitors now.”—Patient 32 (RA, North East England)

“Although I can appreciate JAK inhibitors are the next generation biologics, my concern is that as they are tablet form, what affect could they have on those like me who suffer from gut conditions too.”—Patient 122 (PsA, North East England)

For patients currently on a JAKi:

Journey onto JAKi

“Filgotonib appears to be a new therapy, very little information prior to commencing medication even in the enclosed leaflet.”—Patient 20 (RA, East Midlands)

“COVID implication meant I went onto JAK rather then Rituximab.”—Patient 24 (RA, North West England)

Benefits of JAKi

“The influence of JAK inhibitors in my life has not only had a big physical impact, but…decreased pain and the ability to take part in exercise has led to improved mental health.”—Patient 12 (RA, Northern Ireland)

“The shorter half life with a JAK is a benefit, I have a surgery next week and the drug will wash out in 48 h which is helpful!”—Patient 3 (RA, Greater London)

“…oral tablets are much more convenient, especially when away from home!”—Patient 95 (RA, East of England)

Drawbacks of JAKi

“I have been on a JAK inhibitor since March 2021 and I am at present in a major flare which might indicate the drug is not working.”—Patient 21 (RA, West Midlands)

“I've gained weight on Xeljanz [tofacitinib]. I'd be interested to know if others have found this too.”—Patient 89 (RA, North West England)

  1. COVID coronavirus disease, JAKi janus kinase inhibitor, PsA psoriatic arthritis, RA rheumatoid arthritis