title: Prognosis, clinical outcomes and quality of life issues in cutaneous T-cell lymphoma.
abstract: Although the need for a specific QOL index for MF/SS has been recognized, little work has been done in this area. QOL instruments should address general health concepts, as well as specific issues that are relevant to patients who have MF/SS; a combination of two instruments may be appropriate. Confirming the validity, reliability, and responsiveness to change of a combination of QOL instruments, such as SKINDEX-29 and FACT-G, in patients who have MF/SS will be relevant. For patients who have MF/SS, focusing our efforts on improving the disease and their QOL should translate into improvements that are meaningful to them. Thus, our goal should be to incorporate the findings of QOL research into practice and use the results to guide our practices, as they relate to therapy. Some important considerations are: We must be explicit about what will be done with the information that is obtained about an individual's QOL. We should consider what additional knowledge QOL measures provide that we could not otherwise have. We should be ready for unexpected results, as exemplified by instances where aggressive therapy could result in improved QOL. Although challenges exist in moving forward QOL research in CTCL, the words of wisdom of Tannock bring the concept of QOL into perspective: "When cure remains elusive, it is time to start treating the patient, not just the tumor." A final consideration is that we should not forget the dimension of spirituality, which is especially relevant to patients who have advanced MF/SS. Spirituality is characterized by the capacity to seek purpose and meaning, to have faith, to love, to forgive, and to see beyond current circumstances. Spirituality enables a person to rise above suffering. Unfortunately, research on spirituality is scarce, in part, because of the difficulty in assessing spiritual suffering. Nevertheless, physicians who are caring for patients who have advanced MF/SS should acknowledge the spiritual dimension as an integral component of the dying process.
authors.affiliation: Department of Dermatology and Medicine, Boston University School of Medicine, 720 Harrison Avenue, DOB 801A, Boston, MA 02118, USA. mariefrance.demierre@bmc.org
authors.forename: Marie-France
authors.initials: MF
authors.lastname: Demierre
authors.forename: Youn H
authors.initials: YH
authors.lastname: Kim
authors.forename: Herschel S
authors.initials: HS
authors.lastname: Zackheim
mesh_terms: D018572:Disease-Free Survival; D006801:Humans; D015993:Life Tables; D016410:Lymphoma, T-Cell, Cutaneous / Q000401:mortality* / Q000523:psychology / Q000628:therapy; D017063:Outcome Assessment, Health Care; D011379:Prognosis; D011788:Quality of Life; D012720:Severity of Illness Index; D012878:Skin Neoplasms / Q000401:mortality* / Q000523:psychology / Q000628:therapy; D016019:Survival Analysis; D009626:Terminology as Topic; D016896:Treatment Outcome