Monika Kirsch, Jörg Halter and Sabina De Geest
Background: Health status self-reports are increasingly recognized as an important source of key follow-up data after hematopoietic stem cell transplantation (HSCT).
Purpose: The purpose of this study was to evaluate the occurrence of self-reported symptoms and concerns in longterm survivors and compare their prevalence’s between allogeneic and autologous transplant recipients with various post-HSCT follow-up lengths.
Interventions/Methods: This cross-sectional survey included a convenience sample of 226 autologous and allogeneic HSCT recipients (54% male; 1 to 26 (median 6) years post-transplant) treated as outpatients by the multidisciplinary team of a Swiss stem cell transplant ambulatory. Symptoms and concerns were measured by a self developed self-report questionnaire.
Results: The median number of self-reported physical symptoms per patient was 5 (IQR 4-10), the most frequent being dry skin (47.8%), tiredness (42%), and dry eyes (42%). The most commonly cited concerns were difficulties managing stressful emotional situations (23.9%), anxiety regarding relapse (22.1%) and memory disturbance (21.2%). There were no notable differences in appraisal of performance and number of symptoms between different time groups.
Conclusion: The high frequency of self-reported symptoms and concerns in long-term survivors indicates a need for continuous monitoring by stem cell transplant follow up clinics, which would allow timely and effective interventions to prevent or alleviate late effects.
Implications for Practice: There seems to be good opportunity for health professionals to support long-term survivors by using self-report as clinical tool in follow-up care. Sharing information about problems and symptoms patients face post-treatment will benefit both professionals and patients.
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