Rare diseases

Arthritis patients suffering in silence with DMARD side effects

Patients with RA often have life-disrupting side effects with DMARDs but they do not report them to their rheumatologist for fear of being seen as ‘whingers’, an Australian study has found.

Interviews with patients conducted as part of an OMERACT project show that patients’ lives are often dominated by the cumulative impact of adverse effects from DMARDS such as methotrexate, but which are viewed as merely ‘nuisance’ effects by prescribers.

The findings, based on focus group 39 patients with RA, show the need to base DMARD treatment decisions on patient reported outcomes (PROs) for drug adverse effects rather than just the isolated physiological-based reports derived from clinical trials, the study authors say.

The multinational COMET (Core Outcome Measures in Effectiveness Trial) Initiative included 16 patients with inflammatory arthritis from Australia, as well as patients from the US and Canada.

Almost all reported experiencing so-called ‘nuisance’ side  effects with DMARDs, which for many had a major impact on quality of life because of the disabling effects and limitations on daily physical function.

Methotrexate was regarded as the worst offender among the DMARDs, and patients resorted to many individualised personal coping strategies to minimise side effects such as talking less to avoid irritating a mouth ulcer, or avoiding sports or social activities because of gastrointestinal distress.

Other drugs such as steroids also elicited strong opinions, with some patients describing it as ‘the new smoking’ because of the difficulty in coming off the drug once started.

Patients described how they struggled to balance a drug’s side effects with the relief it provided from their arthritis. Side effects  caused more concern among younger patients with more recent onset disease who had not yet experienced a major relapse

Some patients failed to attribute the adverse effects such as hair loss to their medication, and were reluctant to discuss side effects with their doctor out of concern they would be labelled as ‘whiners’ and switched to a less effective drug.

The study authors, who include Professor Peter Brooks and Professor Lyn March, say the findings show the need to measure patient-relevant outcomes in clinical trials, by asking how an individual feels about adverse effects and the impact on everyday life

“There was consensus that the current dichotomisation of side effects (i.e., “nuisance” vs. important) is judgmental and often arbitrary, potentially stigmatising to patients, and does not reflect patient priorities,” they wrote.

They suggest the use of the WIWI Questions (Was it Worth It?) criteria already used in clinical oncology trials.

The study has also led to the development of patient reported outcomes on adverse effects being included as OMERACT core domain sets, they added.

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