Health status and quality of life among non‐Hodgkin lymphoma survivors

Abstract

BACKGROUND:A growing body of evidence suggests that long‐term survivors with 1 of the more common forms of adult cancer report a quality of life (QOL) similar to that in the general population. However, specific concerns have been identified (sexual dysfunction, fatigue, distress) in this population. Also, less is known concerning survivors of adult non‐Hodgkin lymphoma (NHL), a disease often marked by alternating periods of disease and remission. Therefore, in the current study, the authors compared the QOL status of individuals who reported having active NHL with the QOL status of individuals who were disease‐free short‐term survivors (STS) (2‐4 years postdiagnosis) and long‐term survivors (LTS) (≥5 years postdiagnosis).METHODS:Eligible survivors completed a mailed survey with validated measures, including physical and mental health status measured with the Medical Outcomes Study 36‐item Short Form, cancer‐related QOL, the Functional Assessment of Cancer Therapy‐Lymphoma module, and self‐reported impact of cancer. Other data were collected to examine as correlates.RESULTS:Seven hundred sixty‐one survivors identified from 2 North Carolina cancer registries participated. The average survivor was 10.4 years postdiagnosis (range, 2‐44 years postdiagnosis) and was age 62.7 years (range, 25‐92 years). Survivors with active disease (n = 109) demonstrated worse physical and mental health functioning, worse QOL, and less positive and more negative impacts of cancer compared with disease‐free survivors (n = 652; all P ≤ .01). No significant differences were observed between STS and LTS.CONCLUSIONS:Although survivors with NHL who had active disease reported more negative outcomes compared with off‐treatment survivors, the length of time after diagnosis did not appear to matter with regard to outcomes for STS or LTS. In addition, mixed results from comparisons with general population norms suggested the need for supportive care for this diverse survivorship group. Cancer 2009. © 2009 American Cancer Society.

A high level of fatigue among long-term survivors of non-Hodgkin's lymphoma: results from the longitudinal population-based PROFILES registry in the south of the Netherlands

“…20 This suggests that there is no improvement in time, which is also shown by our 1-year follow-up results.…”

“…One prospective and three cross-sectional studies also observed clinically worse scores for HRQOL domains for NHL survivors compared with those of a normative population. 13,15,17,20 Numerous patients in our study showed large improvements (19-23%) or deteriorations (22-28%) within 1 year, which both indicate a clinically relevant change. 31 However, it is too soon to determine whether this can be defined as an actual change, due to regression to the mean.…”

“…[8][9][10][11][12] In the last decades, more attention is being paid to HRQOL after cancer diagnosis. Some studies have investigated HRQOL and fatigue in NHL survivors, [13][14][15][16][17][18][19][20][21] but almost all used a cross-sectional approach (only one measurement at a defined time). 13,[17][18][19][20][21] However, the longitudinal course of fatigue and HRQOL in patients with NHL and their return to normal life remains largely unknown.…”

“…Some studies have investigated HRQOL and fatigue in NHL survivors, [13][14][15][16][17][18][19][20][21] but almost all used a cross-sectional approach (only one measurement at a defined time). 13,[17][18][19][20][21] However, the longitudinal course of fatigue and HRQOL in patients with NHL and their return to normal life remains largely unknown. The aims of the present study were, therefore, to: (i) assess fatigue and HRQOL twice following primary treatment, (ii) compare fatigue and HRQOL with an age-and sex matched normative population to assess the severity of the concerns, and (iii) identify associations with fatigue in survivors who remained fatigued.…”

Quality of life in higher resolution: the next generation of comparative effectiveness research in malignant hematology

“…19,20 A better understanding of patients' longitudinal experiences means we can more effectively target interventions. By combining patient-reported data with other information in the electronic health record, such as laboratory findings and clinical assessments, we paint a more detailed picture of the patient and his or her experiences, better heralding the future and preparing clinicians to more expertly manage the impact of hematologic malignancies and their treatments over time.…”