LONDON, UK—Lupus patients take or dodge their prescribed meds depending on their individual relationship to several clearly defined ideas, Sharon Chambers, MRCP, and colleagues report early online in Rheumatology.1
"I had this sadistic rheumatologist who told me with a gleeful look on his face that it (cyclophosphamide) would make my hair fall out and make me permanently infertile...so I wouldn't take it."—Patient 032

Lupus patients who took their medications regularly cited 4 main reasons:
  • fear of worsening disease without treatment
  • belief that there was no effective alternative to their prescribed meds
  • concern that their lack of knowledge about lupus meant they should not make changes except under medical guidance
  • a sense of moral obligation or responsibility to others, such as family members

Lupus nonadherence: fantasy, fear, doubt and confusion

Lupus patients who did not take their medications regularly had a different intellectual framework. They more often

  • believed lupus could and should be controlled with alternative methods, except during flares
  • doubted the need for long-term use of drugs
  • feared drug adverse effects
  • had practical (although not financial) difficulties in obtaining their prescriptions
  • felt confused or insulted by what their doctors said to them

"The patients' reasons for taking or not taking their medications largely related to previous experiences with the disease and/or drugs. However, improvements in communication between doctors and patients may promote better adherence in patients with SLE," Dr. Chambers said.

This study at the Autoimmune Rheumatic Disease Clinic at University College London Hospital began with a screening questionnaire that included a visual analogue scale (VAS) self-report of adherence over the previous 6 months. Thirty-three of 87 eligible patients were then selected for interview nonrandomly, "to allow the study population to include subjects representing a wide range of the characteristics under consideration." All patients had systemic lupus erythematosus (SLE) for more than 1 year, self-administered their medications, and were taking at least 1 immunosuppressant.

Among the more adherent patients, Dr. Chambers noted that patients who had suffered severe or life-threatening episodes of SLE were particularly likely to fear that the disease would worsen without treatment. Conversely, patients with relatively quiescent disease were more likely to believe that regular medications were unnecessary.

Lupus drug adverse effect fears require attention

Fear of adverse effects, such as weight gain or osteoporosis with prednisolone, also led patients to either discontinue or reduce the dose taken. Poor communication about the risk and management of side effects was a particular issue. Patient 032 recalled, "...I had this sadistic rheumatologist who told me with a gleeful look on his face that it (cyclophosphamide) would make my hair fall out and make me permanently infertile...so I wouldn't take it."

Dr. Chambers concluded, "Our study suggests that in the UK system where healthcare is provided free at the point of entry, and medications for lupus are affordable to most patients, their decisions to take or not take these medications largely depend on their personal experiences with the drugs or the disease itself. There are, however, important external factors that affect adherence, including the influence of care-givers, and the provisions for renewing prescriptions and follow-up visits with clinicians."

Reference

1. Chambers SA, Raine R, Rahman A, Isenberg D. Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort. Rheumatology 2009;[epub ahead of print] doi:10.1093;rheumatology/ken479