Symptom concealment—a new phenomenon in patients treated with biological therapies?

P. D. W. Kiely

St George's Healthcare NHS Trust, Blackshaw Road, London SW17 0QT, UK

SIR, The articles and discussion by Kroesen et al. [1] and Moots et al. [2] on the association of ‘infection in general’ with biological therapies raise many important issues for clinical rheumatologists. At St George's NHS Trust we have treated 60 patients with infliximab, etanercept or adalimumab since 1999. Two patients have been admitted with severe infections, one with Haemophilus influenzae empyema and another with Pseudomonas pneumonia. Both patients were smokers but had had no previous history of symptomatic pulmonary disease or of significant chest sepsis. In both cases a delay of several weeks occurred between the onset of symptoms and admission to hospital. Part of this delay included a period of blind treatment by the general practitioner with antibiotics, without reference to the rheumatology department. However, in both cases a significant period of delay also occurred before the patient consulted the general practitioner, despite repeated warnings from our department to seek medical advice promptly should infective symptoms occur. We have ascertained that in these cases the patients consciously delayed seeking medical help, against advice, because they feared that this would lead to their biological treatment being withdrawn. This action undoubtedly contributed to the cumulative severity of their ultimate presentation, and is clearly a matter of concern. We have also encountered symptom concealment in several other patients involving non-life-threatening adverse events, such as rash, pruritis and diarrhoea. In each case the patient either did not seek medical advice for some weeks after symptoms occurred or simply did not admit to the new symptoms when attending the department for an infliximab infusion. In one such case of pruritis, the adverse event deteriorated markedly following the next infusion and led to unnecessary morbidity. In each case it was clear that a fear of stopping biological treatment was a dominant factor in the decision not to report new symptoms.

It follows that patient (and general practitioner) education is extremely important if unnecessarily severe adverse events are to be avoided. The incidence of infections (and associated fatalities) may be sufficiently enhanced (0.181 vs 0.008 per year [1]) to justify patients being issued with an ‘alert card’, similar in style to that given to patients taking corticosteroids. This might limit the occurrence and consequences of symptom concealment by acting as a reminder to patients of the potentially serious consequences of infections and other adverse events. Furthermore, the presentation of a specific alert card to a general practitioner should prompt rapid communication with the rheumatology department, thereby minimizing any further delay in assessing and treating new symptoms. An alert card is being developed by our Trust and may be a more realistic approach for those rheumatology departments that are not able to provide a 24-h advice service, as is recommended in both articles [1, 2].

We agree that patients with RA are used to managing episodes of reduced well-being without seeking attention, and that rheumatologists may be desensitized to potential warning signs [1]. Symptom concealment appears to be a new phenomenon in our practice. To combat this, new initiatives, such as the use of an alert card, are required to ensure that the risk–benefit ratio remains firmly in favour of benefit for patients treated with biological therapies.

The author has declared no conflicts of interest.

References

  1. Kroesen S, Widmer AF, Tyndall A, Hasler P. Serious bacterial infections in patients with rheumatoid arthritis under anti-TNF-{alpha} therapy. Rheumatology 2003;42:617–21.[Abstract/Free Full Text]
  2. Moots R, Taggart A, Walker D. Biologic therapy in clinical practice: enthusiasm must be tempered by caution. fRheumatology 2003;42:614–6.[CrossRef]
Accepted 3 July 2003