www.chicagolymphoma.com

Psycho/Social ImpactsCate Maidlow, MSN, RN, OCN, CNL

Survivorship in Lymphoma: Psychosocial Issues in the Transition to Survivor

Cate A. Maidlow, MSN, RN, OCN, CNL

Rush University Cancer Center

Speaker has no relevant financial affiliations or conflicts of interest to disclose.

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Financial Disclosure

Objectives for the Presentation

By the end of the presentation, the learner will be able to:

• Describe challenges of role adjustment for survivors after completion of therapy

• Identify signs of distress and describe challenges related to fear of recurrence and post-therapy health management

• Describe post-therapy cognitive changes and the relationship to psychosocial issues in lymphoma survivors

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Survivorship in Lymphoma

– For patients with lymphoma, perception of survivorship can vary based on:

• Nature of disease

• Type of therapy

• Individual experience/perceptions

• Cultural norms and values

6(NCCN, 2019)

“An individual is considered a survivor from the time of diagnosis, during and immediately after treatment, and through the balance of his or her

life. Family members, friends and caregivers are also affected by cancer (NCCN, 2019).”

• 66 year-old female

• PMH: GERD

• Social/family history: Mother, grandmother, caregiver to step-granddaughter and elderly aunt

• Diagnosed with DLBCL November 2017

– High risk features, patient qualified for clinical trial

– Completed 6 cycles R-CHOP, followed by two cycles (84 days total) of consolidation with continuous blinatumomab

– Upon completion of therapy, patient in CR

– Calling RN often with questions, concerns, searching for resources7

Case Study #1

The period of “early survivorship” is a critical transition period as patients attempt to resume functional activities and important life roles (Keesing, Rosenwax, & Mcnamara, 2017)

Role Adjustment

Return to

work

Family/friend

relationships

Health

surveillance

Self-worthDiet

ExerciseRelationships to

caregivers

Sexuality

Leisure

Long-term

side effects

Caregiving vs.

receiving

Insomnia

FatigueRomantic

relationships

Social

activities

Travel

Cognitive

changes

Chronic

pain

Uncertainty

overall

Recovery from

treatment

Concerns for

the future

Top concerns of lymphoma survivors (Hacket & Dowling, 2018)

(Moterosso et al., 2017)

Nursing Implications

• Focused preparation for end of treatment

• Dedicated end of treatment visit with focus on survivorship care plan and health promotion

– Provide patient with a specific point of contact for concerns

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Role Adjustment

(Hacket & Dowling, 2018))

• Support concerns for future with specific information about the purpose of follow-up care and signs of recurrence

• Repeated education on health maintenance and promotion

• Recognize challenges in return to work and support patient with appropriate referrals

• 60 year-old male

• PMH: HTN, anxiety

• Social/family history: married, employed in IT, two adult children, physically active (taekwondo, running, weight lifting)

• Diagnosed with DLBCL December 2016- painful L shoulder mass

– Completed 6 cycles DA-EPOCH-R + lenalidomide and 12 cycles maintenance lenalidomide with few complications

– Upon completion of therapy, patient in a CR.

• December 2018- patient presented at follow-up visit with worsening anxiety and depression; increased prior to visits 10

Case Study #2

– One third to one half of cancer survivors experience clinically significant distress (NCCN, 2019)

– Psychosocial needs more likely to be unmet after treatment- “just one unmet need post-treatment more likely to lead to distress (Bugos, 2015)”

– Fear of recurrence common unmet need among survivors of hematological cancers (Oberoi, et al., 2017)

– Physical symptoms can contribute to distress: fatigue, insomnia, pain (NCCN, 2019)

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Distress

Defined as “a multifactorial unpleasant emotional experience of a psychological (cognitive , behavioral, emotional), social, spiritual and/or

physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment (NCCN, 2019).”

Nursing Implications

• Address psychological and social needs that manifest during treatment- educate early and often

– Continue distress screening at end of treatment and beyond

– Educate patients/family members that fear of recurrence, worry, stress etc. are common for survivors

• Cluster follow-up care as much as possible to minimize interruptions to patient’s life

• Provide patients with resources as needed: support groups, mental health referrals, spiritual resources, etc.

• Encourage regular exercise12

Distress

(Oberoi, et al., 2017)

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Case Study #3

ST, 53 y.o. male with DLBCL

“I don’t feel like I can focus like before.

Maybe I’m not ready to go back to work?”

MS, 60 y.o. female with FL

“I have to write everything down. My memory is not like it

used to be before cancer.”

JC, 77 y.o. male with CLL

“I guess I forgot to take those pills.”

GM, 66 y.o. female with DLBCL

“I can only focus on one thing at a time since

chemo.”

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Chemobrain and Relation to Psychosocial Issues

• Is chemobrain real?

– Phillip & Merluzzi found over one-third of cancer survivors reported challenges with memory and concentration (2017)

– Krolak, Collins, Weiss, Harris, & Jagt found that nearly 40% of lymphoma survivors reported changes in cognition (2016)

• What is chemobrain?

– “Vague, yet distressing mental changes (ACS, 2016)”

– Symptoms: memory, concentration, attention span, inability to multi-task

• Why is it a problem?

– Can interfere with social interactions, function at work, overall quality of life

– Can contribute to distress

– Can be associated with fatigue and anxiety

Nursing Implications

• Patient education on symptoms of cognitive changes

• What to expect and importance of reporting

• Patients benefit from validation of symptom experience, along with a thorough work-up

– Evaluate impact of fatigue, distress, insomnia, pain and other comorbidities

• NCCN recommends tools to help cope/relieve symptoms (2019):

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Chemobrain and Relation to Psychosocial Issues

(Henderson, Cross, & Baraniak, 2019)

• Compensatory strategies

• Set routine

• Workplace accommodations

• Limit use of alcohol Regular exercise

• Mindfulness-based stress reduction

• According the NCCN guidelines on survivorship, “an individual is considered a survivor from the time of diagnosis, during and immediately after treatment, and through the balance of his or her life (2019)”– But this definition can vary for lymphoma patients based on the nature of their disease, type of therapy

and individual experiences

• Role adjustment from patient to survivor can be difficult for many lymphoma survivors– Survivors can benefit greatly from survivorship care plans and repeated education before and during

follow-up

• Survivors can develop clinically significant symptoms of distress early or late post therapy; can effect recovery and overall well-being– Repeated distress screening and education is important

• Cognitive changes can happen after treatment, patients benefit from education and validation of symptoms– Tools available to help survivors cope with changes/relieve symptoms

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Conclusion

Bugos, K. G. (2015). Issues in Adult Blood Cancer Survivorship Care. Seminars in Oncology Nursing, 31(1), 60-66. doi:10.1016/j.soncn.2014.11.007

Hackett, F., & Dowling, M. (2018). Lymphoma survivors’ experiences at the end of treatment. Journal of Clinical Nursing, 28(3-4), 400-409. doi:10.1111/jocn.14658

Henderson, F. M., Cross, A. J., & Baraniak, A. R. (2019). ‘A new normal with chemobrain’: Experiences of the impact of chemotherapy-related cognitive deficits in long-term breast cancer survivors. Health Psychology Open, 6(1), 205510291983223. doi:10.1177/2055102919832234

Information and Resources about Cancer: Chemo Brain. (2016, June 9). Retrieved from https://www.cancer.org/ (ACS)

Keesing, S., Rosenwax, L., & Mcnamara, B. (2018). The implications of women’s activity limitations and role disruptions during breast cancer survivorship. Womens Health, 14, 174550571875638. doi:10.1177/1745505718756381

Krolak, D., Collins, B., Weiss, L., Harris, C., & Jagt, R. V. (2016). Cognitive function and its relationship to other psychosocial factors in lymphoma survivors. Supportive Care in Cancer, 25(3), 905-913. doi:10.1007/s00520-016-3480-z

Monterosso, L., Taylor, K., Platt, V., Lobb, E., Krishnasamy, M., Musiello, T., . . . Joske, D. (2017). A qualitative study of the post-treatment experiences and support needs of survivors of lymphoma. European Journal of Oncology Nursing, 28, 62-68. doi:10.1016/j.ejon.2017.03.002

NCCN Clinical Practice Guidelines in Oncology: Survivorship. (2019, March 14). Retrieved from https://www.nccn.org/professionals/physician_gls/default.aspx

Oberoi, D., White, V. M., Seymour, J. F., Prince, H. M., Harrison, S., Jefford, M., . . . Giles, G. (2017). The influence of unmet supportive care needs on anxiety and depression during cancer treatment and beyond: A longitudinal study of survivors of haematological cancers. Supportive Care in Cancer, 25(11), 3447-3456. doi:10.1007/s00520-017-3766-9

Philip, E. J., & Merluzzi, T. V. (2016). Psychosocial issues in post-treatment cancer survivors: Desire for support and challenges in identifying individuals in need. Journal of Psychosocial Oncology, 34(3), 223-239. doi:10.1080/07347332.2016.1157716

Raphael, D., Frey, R., & Gott, M. (2019). Maintaining psychosocial wellbeing for post-treatment haematological cancer survivors: Strategies and potential barriers. European Journal of Oncology Nursing, 38, 36-41. doi:10.1016/j.ejon.2018.11.011

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