Factors associated with long-term functional and psychosocial outcomes in patients with non-Hodgkin lymphoma
Keywords:Non-Hodgkin lymphoma, rehabilitation, impairment, function, quality of life
Objective: To assess the long-term functional, psychosocial and participation outcomes in an Australian cohort of non-Hodgkin lymphoma (NHL) survivors.
Methods: A cross-sectional sample of adult NHL survivors at the Peter MacCallum Cancer Centre (between 2015 and 2020), participated by completing validated questionnaires. A series of analyses described their current level of function, psychosocial well-being, and participation.
Results: Of 129 participants (mean (M) ± standard deviation (SD) age: 62.5 ± 8.8 years), the majority (58%) had aggressive NHL and grade III–IV (72%), with time since diagnosis of 4.6 ± 1.2 years. Participants reported ongoing issues after completion of treatment: fatigue (63%), bladder dysfunction (61%), cognitive impairment (53%), and NHL-related pain (46%). Most made good functional recovery (M ± SD) (Functional Independent Measure-Motor: 79.5 ± 8.2), reported minimal change in their negative emotional states, and NHL-specific quality of life (QoL) (Functional Assessment of Cancer Therapy–Lymphoma: 133.5 ± 22.1). Participants were “well” adjusted to community living (Community Integration Measure: 42.2 ± 7.4) and satisfied with their current life (Satisfaction with Life Scale: 26.3 ± 6.0). Factors significantly associated with the poorer current level of function were: age at diagnosis < 60 years, time since NHL diagnosis > 4.5 years, and aggressive NHL type.
Conclusion: Despite good functional recovery and adjustment in the community, NHL survivors report the presence of ongoing residual impairments and cognitive issues, which requires long-term rehabilitation-inclusive management.
This cross-sectional study evaluated functional and psychosocial outcomes in non-Hodgkin lymphoma (NHL) survivors. Most patients made a good functional recovery and reported minimal change in their negative emotional states and quality of life after they were discharged. Patients reported satisfaction with their current life and were “well” adjusted to community living after NHL treatment. However, many reported ongoing issues, specifically fatigue, bladder dysfunction, cognitive impairment, and NHL-related pain. Those below 60 years of age when diagnosed, with time since NHL of over 4.5 years, and with aggressive and advanced NHL grades were associated with a poorer current level of function. These findings suggest that, despite patients’ potential adjustment to disability over time (response-shift phenomenon), many patients with NHL need long-term rehabilitation-inclusive management of ongoing disability and psychosocial issues in the community post-discharge.
Mugnaini EN, Ghosh N. Lymphoma. Prim Care 2016; 43: 661-675.
https://doi.org/10.1016/j.pop.2016.07.012 DOI: https://doi.org/10.1016/j.pop.2016.07.012
Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 2018; 68: 394-424.
https://doi.org/10.3322/caac.21492 DOI: https://doi.org/10.3322/caac.21492
Morrison VA, Bell JA, Hamilton L, Ogbonnaya A, Shih HC, Hennenfent K, et al. Economic burden of patients with diffuse large B-cell and follicular lymphoma treated in the USA. Future Oncol 2018; 14: 2627-2642.
https://doi.org/10.2217/fon-2018-0267 DOI: https://doi.org/10.2217/fon-2018-0267
National Institute of Health. National Cancer Institute. Cancer stat fact sheets. [cited 2022 28 March]. Available from: www.seer.cancer.gov/statfacts/html
Oerlemans S, Issa DE, van den Broek EC, Nijziel MR, Coebergh JW, Mols F, et al. 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: 229-238.
https://doi.org/10.1111/ejh.12335 DOI: https://doi.org/10.1111/ejh.12335
Oerlemans S, Mols F, Nijziel MR, Lybeert M, van de Poll-Franse LV. 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: 993-1004.
https://doi.org/10.1007/s00277-011-1274-4 DOI: https://doi.org/10.1007/s00277-011-1274-4
Oerlemans S, Mols F, Nijziel MR, Zijlstra WP, Coebergh JW, van de Poll-Franse LV. The course of anxiety and depression for patients with Hodgkin's lymphoma or diffuse large B cell lymphoma: a longitudinal study of the PROFILES registry. J Cancer Surviv 2014; 8: 555-564.
https://doi.org/10.1007/s11764-014-0367-1 DOI: https://doi.org/10.1007/s11764-014-0367-1
Oerlemans S, Nijziel MR, van de Poll-Franse LV. Age-related differences in quality of life among patients with diffuse large B-cell lymphoma. Cancer 2015; 121: 2857-2858.
https://doi.org/10.1002/cncr.29427 DOI: https://doi.org/10.1002/cncr.29427
Oerlemans S, Issa DE, van den Broek EC, Nijziel MR, Coebergh JW, Huijgens PC, et al. 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: 1705-1715.
https://doi.org/10.1007/s00277-014-2099-8 DOI: https://doi.org/10.1007/s00277-014-2099-8
Fu JB, Lee J, Smith DW, Shin K, Guo Y, Bruera E. Frequency and reasons for return to the primary acute care service among patients with lymphoma undergoing inpatient rehabilitation. PM R 2014; 6: 629-634.
https://doi.org/10.1016/j.pmrj.2013.12.009 DOI: https://doi.org/10.1016/j.pmrj.2013.12.009
Oerlemans S, Mols F, Issa DE, Pruijt JH, Peters WG, Lybeert M, et al. 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. Haematologica 2013; 98: 479-486.
https://doi.org/10.3324/haematol.2012.064907 DOI: https://doi.org/10.3324/haematol.2012.064907
Arts LPJ, Oerlemans S, Tick L, Koster A, Roerdink HTJ, van de Poll-Franse LV. More frequent use of health care services among distressed compared with nondistressed survivors of lymphoma and chronic lymphocytic leukemia: results from the population-based PROFILES registry. Cancer 2018; 124: 3016-3024.
https://doi.org/10.1002/cncr.31410 DOI: https://doi.org/10.1002/cncr.31410
Arboe B, Olsen MH, Goerloev JS, Duun-Henriksen AK, Johansen C, Dalton SO, et al. Return to work for patients with diffuse large B-cell lymphoma and transformed indolent lymphoma undergoing autologous stem cell transplantation. Clin Epidemiol 2017; 9: 321-329.
https://doi.org/10.2147/CLEP.S134603 DOI: https://doi.org/10.2147/CLEP.S134603
Joshy G, Thandrayen J, Koczwara B, Butow P, Laidsaar-Powell R, Rankin N, et al. Disability, psychological distress and quality of life in relation to cancer diagnosis and cancer type: population-based Australian study of 22,505 cancer survivors and 244,000 people without cancer. BMC Med 2020; 18: 372.
https://doi.org/10.1186/s12916-020-01830-4 DOI: https://doi.org/10.1186/s12916-020-01830-4
Smith SK, Zimmerman S, Williams CS, Zebrack BJ. Health status and quality of life among non-Hodgkin lymphoma survivors. Cancer 2009; 115: 3312-3323.
https://doi.org/10.1002/cncr.24391 DOI: https://doi.org/10.1002/cncr.24391
Tsatsou I, Konstantinidis T, Kalemikerakis I, Adamakidou T, Vlachou E, Govina O. Unmet supportive care needs of patients with hematological malignancies: a systematic review. Asia Pac J Oncol Nurs 2021; 8: 5-17.
https://doi.org/10.4103/apjon.apjon_41_20 DOI: https://doi.org/10.4103/apjon.apjon_41_20
Jaffe ES, Barr PM, Smith SM. Understanding the new WHO Classification of Lymphoid Malignancies: why it's important and how it will affect practice. Am Soc Clin Oncol Educ Book 2017; 37: 535-546.
https://doi.org/10.1200/EDBK_175437 DOI: https://doi.org/10.1200/EDBK_175437
Swerdlow SH, Campo E, Pileri SA, Harris NL, Stein H, Siebert R, et al. The 2016 revision of the World Health Organization classification of lymphoid neoplasms. Blood 2016; 127: 2375-2390.
https://doi.org/10.1182/blood-2016-01-643569 DOI: https://doi.org/10.1182/blood-2016-01-643569
World Health Organization (WHO). International Classification of Functioning, Disability, and Health (ICF). Geneva: WHO; 2001.
Granger C. The emerging science of functional assessment: our tool for outcomes analysis. Arch Phys Med Rehabil 1998; 79: 235-240.
https://doi.org/10.1016/S0003-9993(98)90000-4 DOI: https://doi.org/10.1016/S0003-9993(98)90000-4
Lovibond SH, Lovibond P. Manual for the Depression Anxiety Stress Scales. Sydney, Australia: Psychology Foundation of Australia; 1995.
https://doi.org/10.1037/t01004-000 DOI: https://doi.org/10.1037/t01004-000
Hlubocky F, Webster K, Cashy J, Beaumont J, Cella D. The development and validation of a measure of health-related quality of life for non-hodgkin's lymphoma: the functional assessment of cancer therapy - lymphoma (FACT-Lym). Lymphoma 2013; Article ID 147176. doi: 10.1155/2013/147176.
https://doi.org/10.1155/2013/147176 DOI: https://doi.org/10.1155/2013/147176
Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol 1993; 11: 570-579.
https://doi.org/10.1200/JCO.1922.214.171.1240 DOI: https://doi.org/10.1200/JCO.19126.96.36.1990
Ganz PA, Schag CA, Lee TJ, Sims M. The CARES: A generic measure of health related quality of life for patients with cancer. Quality of Life Research 1992; 1: 19-29.
https://doi.org/10.1007/BF00435432 DOI: https://doi.org/10.1007/BF00435432
McColl MA, Davies D, Carlson P, Johnston J, Minnes P. The community integration measure: development and preliminary validation. Arch Phys Med Rehabil 2001; 82: 429-434.
https://doi.org/10.1053/apmr.2001.22195 DOI: https://doi.org/10.1053/apmr.2001.22195
Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess 1985; 49: 71-75.
https://doi.org/10.1207/s15327752jpa4901_13 DOI: https://doi.org/10.1207/s15327752jpa4901_13
Schwartz CE, Bode R, Repucci N, Becker J, Sprangers MA, Fayers PM. The clinical significance of adaptation to changing health: a meta-analysis of response shift. Qual Life Res 2006; 15: 1533-1550.
https://doi.org/10.1007/s11136-006-0025-9 DOI: https://doi.org/10.1007/s11136-006-0025-9
Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 1999; 48: 1507-1515.
https://doi.org/10.1016/S0277-9536(99)00045-3 DOI: https://doi.org/10.1016/S0277-9536(99)00045-3
Kang D, Cho J, Kim IR, Kim MK, Kim WS, Kim SJ. Health-related quality of life in non-hodgkin lymphoma survivors: a prospective cohort study. Cancer Res Treat 2018; 50: 1051-1063.
https://doi.org/10.4143/crt.2017.207 DOI: https://doi.org/10.4143/crt.2017.207
Leak A, Smith SK, Crandell J, Jenerette C, Bailey DE, Zimmerman S, et al. Demographic and disease characteristics associated with non-hodgkin lymphoma survivors' quality of life: does age matter? Oncol Nurs Forum 2013; 40: 157-162.
https://doi.org/10.1188/13.ONF.157-162 DOI: https://doi.org/10.1188/13.ONF.157-162
Smith SK, Mayer DK, Zimmerman S, Williams CS, Benecha H, Ganz PA, et al. Quality of life among long-term survivors of non-Hodgkin lymphoma: a follow-up study. J Clin Oncol 2013; 31: 272-279.
https://doi.org/10.1200/JCO.2011.40.6249 DOI: https://doi.org/10.1200/JCO.2011.40.6249
Amatya B, Khan F, Lew TE, Dickinson M. Rehabilitation in patients with lymphoma: an overview of systematic reviews. J Rehabil Med 2021; 53: jrm00163.
https://doi.org/10.2340/16501977-2810 DOI: https://doi.org/10.2340/16501977-2810
Leak A, Mayer DK, Smith S. Quality of life domains among non-Hodgkin lymphoma survivors: an integrative literature review. Leuk Lymphoma 2011; 52: 972-985.
https://doi.org/10.3109/10428194.2011.563884 DOI: https://doi.org/10.3109/10428194.2011.563884
National Cancer Institute. Non-Hodgkin lymphoma. 2022 [cited 2022 14 June]. Available from: http://www.cancer.gov/cancertopics/types/non-hodgkin
Heywood R, McCarthy AL, Skinner TL. Efficacy of exercise interventions in patients with advanced cancer: a systematic review. Arch Phys Med Rehabil 2018; 99: 2595-2620.
https://doi.org/10.1016/j.apmr.2018.04.008 DOI: https://doi.org/10.1016/j.apmr.2018.04.008
Khan F, Amatya B, Ng L, Drummond K, Olver J. Multidisciplinary rehabilitation after primary brain tumour treatment. Cochrane Database Syst Rev 2013; 1: CD009509.
https://doi.org/10.1002/14651858.CD009509.pub2 DOI: https://doi.org/10.1002/14651858.CD009509.pub2
Knips L, Bergenthal N, Streckmann F, Monsef I, Elter T, Skoetz N. Aerobic physical exercise for adult patients with haematological malignancies. Cochrane Database Syst Rev 2019; 1: CD009075.
https://doi.org/10.1002/14651858.CD009075.pub3 DOI: https://doi.org/10.1002/14651858.CD009075.pub3
Holm LV, Hansen DG, Johansen C, Vedsted P, Larsen PV, Kragstrup J, et al. Participation in cancer rehabilitation and unmet needs: a population-based cohort study. Support Care Cancer 2012; 20: 2913-2924.
https://doi.org/10.1007/s00520-012-1420-0 DOI: https://doi.org/10.1007/s00520-012-1420-0
Veloso AG, Sperling C, Holm LV, Nicolaisen A, Rottmann N, Thayssen S, et al. Unmet needs in cancer rehabilitation during the early cancer trajectory - a nationwide patient survey. Acta Oncol 2013; 52: 372-381.
https://doi.org/10.3109/0284186X.2012.745648 DOI: https://doi.org/10.3109/0284186X.2012.745648
Reames BN, Krell RW, Ponto SN, Wong SL. Critical evaluation of oncology clinical practice guidelines. J Clin Oncol 2013; 31: 2563-2568.
https://doi.org/10.1200/JCO.2012.46.8371 DOI: https://doi.org/10.1200/JCO.2012.46.8371
How to Cite
Copyright (c) 2023 Bhasker Amatya, Michael Dickinson , Fary Khan
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
All digitalized JRM contents is available freely online. The Foundation for Rehabilitation Medicine owns the copyright for all material published until volume 40 (2008), as from volume 41 (2009) authors retain copyright to their work and as from volume 49 (2017) the journal has been published Open Access, under CC-BY-NC licences (unless otherwise specified). The CC-BY-NC licenses allow third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for non-commercial purposes, provided proper attribution to the original work.