Improvement of Cancer Patient Follow-up

The importance of loss to follow-up (LTFU) in patients with cancer is self-evident. If LTFU occurs before treatment is completed (abandonment of therapy), the result is very likely premature death. Strategies for reducing abandonment of therapy have been reported, e.g., in children in Central America. In some parts of the developing world, Abandonment of Therapy is the most important cause of treatment failure. If LTFU occurs after completion of therapy, recurrence of disease cannot be monitored, late sequelae will not be detected, and treatment outcome cannot be determined. Understanding the causes of LTFU is the first step in developing interventions designed to minimize LTFU and so improve cancer control. This is particularly important in low-income countries where LTFU is most prevalent and programs of cancer control are only now emerging.

At King Faisal Specialist Hospital and Research Centre (KFSHRC) in Riyadh, Saudi Arabia, in collaboration with the INCTR, two projects have been undertaken in adults and children with malignant lymphoma. In a retrospective study involving patients referred to KFSHRC from several institutions, of 144 pediatric and 431 adult patients diagnosed in 1997 and 1998, 30% and 48.5% respectively were LTFU after four years (excluding patients known to have expired). In 2001-2002, 196 pediatric and adult patients were enrolled in a prospective study at KFSHRC in which detailed explanations were obtained for non-attendance at follow-up appointments (no show) during active treatment. Sixteen months after commencement of the study, 49 patients (25%) were “no show” due to patient-based errors—such as the patient forgetting about the appointment, or being mistaken about the appointment date (20), transportation problems (8), patient not contactable (18), and personal reasons (3). In addition, 45 patients (23%) were recorded incorrectly as “no show” because of hospital-based errors (failure to communicate properly with patients). These initial results have been reported [1].

The pilot study in Saudi Arabia focuses on a country where adequate therapy and diagnosis are available but there is considerable LTFU: a circumstance where resources are such that corrective action can quickly be taken once the cause of the problem is identified. In countries with severe economic and demographic problems, the limited resources of both institutions and patients must be taken into account as well as the possibility that reasons for LTFU may vary widely from one region to another, necessitating different approaches to the problem.

It is proposed to undertake additional prospective studies and LTFU in other developing countries. The objective is to establish follow-up procedures that can be continued as part of routine cancer care after the prospective study is over and that collaborators can help to implement in other institutions. These “self-replicating” programs are perhaps the best way to improve follow-up.

Arthur Levin, Stuart Brown,
Ronnie Barr, Julia Challinor,
Linda Krebs

References

1. Brown S, Belgaumi A, Ajarim D, et al (2004). European Journal of Cancer Care 13, 180-184. Loss to follow-up of patients with malignant lymphoma.