International Development of Four EORTC Disease-specific Quality of Life Questionnaires for Patients with Hodgkin Lymphoma, High- and Low-grade Non-Hodgkin Lymphoma and Chronic Lymphocytic Leukaemia

Overview

Journal Qual Life Res

Specialties Pharmacology
Rehabilitation Medicine

Date 2017 Nov 12

PMID 29127596

Citations 21

Authors

Lonneke van de Poll-Franse

Simone Oerlemans

Anne Bredart

Charalampia Kyriakou

Monika Sztankay

Stephan Pallua

Laurien Daniels

Carien L Creutzberg

Kim Cocks

Sandra Malak

Giovanni Caocci

Stefano Molica

Weichu Chie

Fabio Efficace

Affiliations

Soon will be listed here.

Abstract

Purpose: This paper describes the international, cross-cultural development of four disease-specific EORTC QoL questionnaires, to supplement the EORTC QLQ-C30, for patients with Hodgkin lymphoma (HL), high- or low-grade non-Hodgkin lymphoma (HG/LG-NHL), and CLL.

Methods: Questionnaire development was conducted according to guidelines from the EORTC Quality of Life Group. Phase I comprised generation of QoL issues relevant to patients. Phase II included operationalization and assessment of item relevance. In phase III, items were pretested in a cross-cultural sample.

Results: In Phase I, 75 issues were identified through focus groups and systematic literature searches. Interviews with 80 health-care professionals and 245 patients resulted in a provisional module of 38 items (phase II) representing items relevant for all or at least one of the four malignancies. In Phase III, this was tested in 337 patients from five European countries and resulted in a questionnaire with 27 items for HL (EORTC QLQ-HL27), 29 items for HG-NHL (EORTC QLQ-NHL-HG29), 20 items for LG-NHL (EORTC QLQ-NHL-LG20) and 17 items for CLL (EORTC QLQ-CLL17).

Conclusions: This study provides four new EORTC modules for use in clinical research and routine practice in conjunction with the EORTC QLQ-C30 for assessing QoL in patients with lymphoma and CLL.

Citing Articles

Establishing meaningful change thresholds for European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire CLL-specific module domain scores: An analysis based on the TRANSCEND CLL 004 study in patients with relapsed or....

Eliason L, Fofana F, Wang L, Riedell P, Guo S EJHaem. 2024; 5(6):1165-1172.

PMID: 39691275 PMC: 11647687. DOI: 10.1002/jha2.1007.

Preferences of patients and physicians in the United States for relapsed/refractory follicular lymphoma treatments.

Thomas C, Marsh K, Trapali M, Krucien N, Worth G, Cockrum P Cancer Med. 2024; 13(19):e70177.

PMID: 39394846 PMC: 11470200. DOI: 10.1002/cam4.70177.

Real-world data for marginal zone lymphoma patients in the French REALYSA cohort: The REALMA study.

Bommier C, Donzel M, Rossi C, Fornecker L, Bijou F, Chauchet A Hematol Oncol. 2024; 42(6):e3314.

PMID: 39351974 PMC: 11590051. DOI: 10.1002/hon.3314.

Evaluating the Effectiveness of Geriatric-Specific Cancer Rehabilitation Programs on Patient Health Outcomes.

Ali S, Elballah K, Begum N, Pathath A, Sayed A, Mohammed H Asian Pac J Cancer Prev. 2024; 25(6):2033-2042.

PMID: 38918665 PMC: 11382855. DOI: 10.31557/APJCP.2024.25.6.2033.

Patient-reported outcomes in Hodgkin lymphoma trials: a systematic review.

Oliva E, Ionova T, Laane E, Csenar M, Schroer J, Behringer K Front Oncol. 2024; 14:1353101.

PMID: 38544841 PMC: 10965683. DOI: 10.3389/fonc.2024.1353101.

References

Mols F, Vingerhoets A, Coebergh J, Vreugdenhil G, Aaronson N, Lybeert M . Better quality of life among 10-15 year survivors of Hodgkin's lymphoma compared to 5-9 year survivors: a population-based study. Eur J Cancer. 2006; 42(16):2794-801. DOI: 10.1016/j.ejca.2006.08.006. View

Friedman D, Constine L . Late effects of treatment for Hodgkin lymphoma. J Natl Compr Canc Netw. 2006; 4(3):249-57. DOI: 10.6004/jnccn.2006.0024. View

Cheson B, Greenberg P, Bennett J, Lowenberg B, Wijermans P, Nimer S . Clinical application and proposal for modification of the International Working Group (IWG) response criteria in myelodysplasia. Blood. 2006; 108(2):419-25. DOI: 10.1182/blood-2005-10-4149. View

Muller D, Fischer K, Kaiser P, Eichhorst B, Walshe R, Reiser M . Cost-effectiveness of rituximab in addition to fludarabine and cyclophosphamide (R-FC) for the first-line treatment of chronic lymphocytic leukemia. Leuk Lymphoma. 2015; 57(5):1130-9. DOI: 10.3109/10428194.2015.1070151. View

Hodgson D . Hodgkin lymphoma: the follow-up of long-term survivors. Hematol Oncol Clin North Am. 2008; 22(2):233-44, vi. DOI: 10.1016/j.hoc.2008.01.004. View

Hodgson D, Grunfeld E, Gunraj N, Del Giudice L . A population-based study of follow-up care for Hodgkin lymphoma survivors: opportunities to improve surveillance for relapse and late effects. Cancer. 2010; 116(14):3417-25. DOI: 10.1002/cncr.25053. View

Oerlemans S, Mols F, Nijziel M, Lybeert M, van de Poll-Franse L . The impact of treatment, socio-demographic and clinical characteristics on health-related quality of life among Hodgkin's and non-Hodgkin's lymphoma survivors: a systematic review. Ann Hematol. 2011; 90(9):993-1004. PMC: 3150657. DOI: 10.1007/s00277-011-1274-4. View

Ng A, Mauch P . Late effects of Hodgkin's disease and its treatment. Cancer J. 2009; 15(2):164-8. DOI: 10.1097/PPO.0b013e31819e30d7. View

Rodeghiero F, Stasi R, Gernsheimer T, Michel M, Provan D, Arnold D . Standardization of terminology, definitions and outcome criteria in immune thrombocytopenic purpura of adults and children: report from an international working group. Blood. 2008; 113(11):2386-93. DOI: 10.1182/blood-2008-07-162503. View

10.

Oerlemans S, Issa D, van den Broek E, Nijziel M, Coebergh J, Huijgens P . Health-related quality of life and persistent symptoms in relation to (R-)CHOP14, (R-)CHOP21, and other therapies among patients with diffuse large B-cell lymphoma: results of the population-based PHAROS-registry. Ann Hematol. 2014; 93(10):1705-15. DOI: 10.1007/s00277-014-2099-8. View

11.

Majhail N, Ness K, Burns L, Sun C, Carter A, Francisco L . Late effects in survivors of Hodgkin and non-Hodgkin lymphoma treated with autologous hematopoietic cell transplantation: a report from the bone marrow transplant survivor study. Biol Blood Marrow Transplant. 2007; 13(10):1153-9. PMC: 2083636. DOI: 10.1016/j.bbmt.2007.06.003. View

12.

VON DER Weid N . Adult life after surviving lymphoma in childhood. Support Care Cancer. 2008; 16(4):339-45. DOI: 10.1007/s00520-007-0369-x. View

13.

Oerlemans S, Issa D, van den Broek E, Nijziel M, Coebergh J, Mols F . Impact of therapy and disease-related symptoms on health-related quality of life in patients with follicular lymphoma: results of the population-based PHAROS-registry. Eur J Haematol. 2014; 93(3):229-38. DOI: 10.1111/ejh.12335. View

14.

Hallek M, Cheson B, Catovsky D, Caligaris-Cappio F, Dighiero G, Dohner H . Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia: a report from the International Workshop on Chronic Lymphocytic Leukemia updating the National Cancer Institute-Working Group 1996 guidelines. Blood. 2008; 111(12):5446-56. PMC: 2972576. DOI: 10.1182/blood-2007-06-093906. View

15.

van de Schans S, Issa D, Visser O, Nooijen P, Huijgens P, Karim-Kos H . Diverging trends in incidence and mortality, and improved survival of non-Hodgkin's lymphoma, in the Netherlands, 1989-2007. Ann Oncol. 2011; 23(1):171-182. DOI: 10.1093/annonc/mdr055. View

16.

Hess S, Johannsdottir I, Hamre H, Kiserud C, Loge J, Fossa S . Adult survivors of childhood malignant lymphoma are not aware of their risk of late effects. Acta Oncol. 2011; 50(5):653-9. DOI: 10.3109/0284186X.2010.550934. View

17.

Marcus R, Imrie K, Solal-Celigny P, Catalano J, Dmoszynska A, Raposo J . Phase III study of R-CVP compared with cyclophosphamide, vincristine, and prednisone alone in patients with previously untreated advanced follicular lymphoma. J Clin Oncol. 2008; 26(28):4579-86. DOI: 10.1200/JCO.2007.13.5376. View

18.

Ware Jr J, Sherbourne C . The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992; 30(6):473-83. View

19.

Junlen H, Peterson S, Kimby E, Lockmer S, Linden O, Nilsson-Ehle H . Follicular lymphoma in Sweden: nationwide improved survival in the rituximab era, particularly in elderly women: a Swedish Lymphoma Registry study. Leukemia. 2014; 29(3):668-76. DOI: 10.1038/leu.2014.251. View

20.

Efficace F, Kemmler G, Vignetti M, Mandelli F, Molica S, Holzner B . Health-related quality of life assessment and reported outcomes in leukaemia randomised controlled trials - a systematic review to evaluate the added value in supporting clinical decision making. Eur J Cancer. 2008; 44(11):1497-506. DOI: 10.1016/j.ejca.2008.03.017. View