Activation, Preparedness Following Treatment Lacking Among Lymphoma Survivors

A significant portion of lymphoma survivors reported low levels of activation for survivorship, and both activation and preparedness were significantly associated with a treatment provider’s survivorship transition practices, according to observations from a study published in the Journal of Cancer Survivorship.¹

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Survivorship following cancer treatment—specifically, the transition from acute medical care into a survivorship phase—is a critical transitional moment a patient’s cancer journey where many patients can experience a loss of formal care support. Many patients experience challenges throughout this transition, as they become expected to manage their own care.¹

Broadly, patient activation can be defined as “understanding one’s role in the care process and having the knowledge, skill, and confidence” to take on that role. Patient activation has been reported to increase the likelihood a patient can cope with the side effects of their illness, initiate a healthier diet following diagnosis, and feel that their treatment plans reflect their values.^1,2

Concurrently, preparedness is the extent to which a patient believes they have enough information about what to expect after the completion of primary cancer treatments. In a trial conducted by Leach et al., lower preparedness levels were associated with low perceived quality of survivorship care, high depressive symptoms, and little discussion about possible side effects with a member of their care team.^1,3

Survivors of lymphoma can experience a multitude of significant physical, social, and emotional challenges, with late effects including an increased risk of heart, lung, and kidney disease. Given the gap in literature regarding this issue and the important implications for patient health, the investigators sought to better understand activation and preparedness among lymphoma survivors.¹

Firstly, the study authors aimed to use descriptive statistics to characterize activation and preparedness. Secondly, they sought to examine the association of transition experiences, practical concerns, and psychosocial factors with preparedness and activation, with the goal of informing lymphoma survivors at high risk about future interventions they should take.¹

Activation levels were distributed quite evenly, with 41.6% reporting not taking an active role in their care or gaining knowledge to act and 57.4% reporting taking actions or maintaining positive behaviors. On the other hand, average preparedness was relatively high, with a median score of 2.94 on a 4-point scale.¹

According to a multiple regression model, variables associated with significantly higher levels of activation were more scores on care transition practices, greater fear of a recurrence of their cancer, and older age. Regarding preparedness, comorbidities, sleep problems, and further discussion on follow-up care were associated with higher levels.¹

The investigators found that less activated survivors were younger, married, and typically resided in a more deprived geographic area. Fatigue was also a significant correlate of low activation, which could suggest that patients who are dealing with many concurrent obstacles of adult life following treatment may be less activated than others.¹

Care practices and the importance of their continuation following acute care was consistent with the work of Leach et al., who found that “the more a survivor feels prepared for the transition to post-treatment care, the better they are at managing their cancer-related symptoms.” However, the authors of this current study clarified that they did not find an association between area-level deprivation and preparedness like Leach et al.^1,3

Some implications for cancer survivors were discussed. The study authors recommended that oncology care and non-oncology care providers be educated about the importance of effective care transition practices. Additionally, providers engaged with lymphoma survivors should consistently assess their patient’s confidence in managing their care. Lastly, survivors who may be at higher risk of a lack of preparedness affecting their quality of life should be specifically targeted for a more intensive approach.¹

“Survivor-focused intervention studies are needed to determine the most effective solutions to improving lymphoma survivorship care,” the investigators concluded.¹

REFERENCES

1. Manne SL, Hudson SV, O’Malley D, et al. Survivorship preparedness and activation among survivors of lymphoma. J Cancer Surviv. 2024. doi:10.1007/s11764-024-01664-6

2. Hibbard JH, Mahoney E, Sonet E. Does patient activation level affect the cancer patient journey? Patient Ed and Counsel. 2017;100(7):1276-1279. doi:10.1016/j.pec.2017.03.019

3. Leach CR, Troeschel AN, Wiatrek D, et al. Preparedness and cancer-related symptom management among cancer survivors in the first year post-treatment. Ann Behav Med. 2017;51:587-598. doi:10.1007/s12160-017-9880-6