OBJECTIVES

Post-transplant lymphoproliferative disease (PTLD) is a lymphoma that occurs after allogeneic hematopoietic cell or solid organs transplantation; it is often caused by Epstein-Barr virus (EBV). Since there are no validated patient-reported outcome (PRO) instruments for EBV+ PTLD patients, this study aimed to report on the relevance of existing PROs in assessing health-related quality of life in this population.

METHODS

A moderated focus group with adult EBV+PTLD patients was conducted using a concept confirmation and an open-ended concept elicitation approach. Domains of several frequently used PROs were used in the concept confirmation portion: the EuroQoL Group- 5 Dimension (EQ-5D), Short Form Health Survey-Version 2 (SF-36v2) and Function Assessment of Chronic Illness Therapy- Lymphoma (FACT-LYM). Discussed domains included physical, emotional, and social functioning. The concept elicitation portion was a general discussion of symptoms and patient burden of illness.

RESULTS

Seven patients participated in the moderated focus group: six female, one male. All PROs had some degree of relevance to the participants. The EQ-5D was relevant for pain/discomfort and anxiety/depression domains. Most of the domains of the SF-36v2 were relevant except the general health perception domain which wasn’t applicable. The FACT-LYM was the most relevant PRO studied, with all domains relevant to the studied population. Specific signs and symptoms from the lymphoma-specific sub-scale and feelings of “sad”, “nervous”, or “worry” about their disease progressing from the emotional well-being domain were particularly pertinent to the participants. The physical, social/family and functional domains from the FACT-Lym were also appropriate as they measured concepts of lack of energy, pain, nausea and support from family and friends. The concept-elicitation drew no new content.

CONCLUSIONS

This research identified that all domains of the FACT-LYM were relevant for EBV⁺ PTLD patients, with the lymphoma-specific and emotional well-being domain being the most meaningful measures.