Date of Award

10-16-2023

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Nursing

First Advisor

Patricia Friend

Abstract

Background: Conventional approaches for assessing and managing symptoms in cancer survivors are unlikely to be effective in cancer survivorship care because clinician-driven assessment limits the voice of the cancer survivor while the burden and complexity of cancer care increases. Yet, cancer survivors are not prepared for the shift from clinician-driven assessment and management of symptoms to cancer survivor self-report of symptoms and self-management of their own care. There are gaps in clinician assessment, and no studies describe how patient empowerment may facilitate the cancer survivor’s ability to assume the responsibilities of monitoring, reporting, and managing symptoms as the cancer survivor transitions into early survivorship. Patient-reported assessment of symptoms, utilizing patient-reported outcomes (PROs) instruments, may be a mechanism to empower cancer survivors; however, the relationship and associations are not known. Although PROs are not a standard of care, these assessment instruments are included in clinical trials and becoming embedded into the patient electronic health record [EHR]. However, it is unknown if the use of PROs assessments in clinical practice leads to understanding cancer survivor empowerment and if the investment of resources to implement PROs assessment tools is value-added. Purpose: The purpose of this repeated measures study was to assess if the use of PROs is associated with patient empowerment of adult cancer survivors in early survivorship following primary cancer treatment. The aims were to: (1) describe the relationship between patient empowerment and PROs in breast, colorectal, gynecological, and lung cancer survivors; (2) demonstrate the associations between patient empowerment and PROs in these survivors after controlling for demographic and clinical characteristics; and (3) explore whether the associations between patient empowerment and PROs change over time, comparing immediately post-treatment and three months post-treatment after controlling demographic and clinical characteristics. Methods: A convenience sample of 83 adult breast, colorectal, gynecologic, and lung cancer survivors immediately following chemotherapy in any phase of primary cancer treatment were invited to participate. The setting for recruitment is a multi-site community-based cancer center with three hospital-based, outpatient medical oncology clinics in southeastern Wisconsin. Patient clinic schedules were reviewed to identify potential subjects. If eligible, the patient was invited to participate, and informed consent was obtained. The participant chose to complete the questionnaire online or paper format in the clinic and was given a unique passcode. Thirty-three participants, who met eligibility by finishing chemotherapy as the last treatment modality for primary cancer treatment, completed the questionnaire again three months post-treatment for the exploratory aim. Cancer-related Patient Empowerment Scale, PROMIS® Self-Efficacy Managing Chronic Diseases, and PROMIS®-29 Profile v2.1, instruments were utilized. Sociodemographic data and clinical characteristics were collected from the participants and their electronic health record. Data analysis used t-test, Pearson’s correlation coefficient, and hierarchical multiple regression analysis. The statistical analysis was determined at a level of 0.05 level of significance. In addition, analysis of covariance (ANCOVA) for repeated measures was used for the exploratory aim. Results: Pearson’s correlation coefficient found a significant relationship between patient empowerment and self-efficacy, and a significant negative correlation between self-efficacy and symptoms was observed. While patient empowerment and PROs symptom profile total score did not demonstrate a significant linear relationship, symptom profile subscales were associated with patient empowerment except for sleep disturbances. Managing social role and activities and physical function were positively correlated with patient empowerment whereas a negative correlation was found between patient empowerment and the following symptoms depression, anxiety, fatigue, pain interference and pain rating. Hierarchical multiple regression analysis demonstrated that PROs self-efficacy predicts patient empowerment immediately following chemotherapy treatment; however, this was not observed in the subset of participants when measured again three months post-treatment. PROs symptom profile total score did not add significantly to the model. A decrease in patient empowerment from immediately following last dose of chemotherapy to three months post-treatment was found using ANCOVA repeated measures, controlling age and highest level of education completed. However, PROs self-efficacy and symptom profile had no statistically significant change observed from immediately post-chemotherapy treatment to three months post-treatment. Conclusions/Implications: Due to the complex, changing paradigm of cancer care and conventional clinician-driven assessment less sustainable in survivorship care, cancer survivor empowerment must be assessed and supported in clinical practice, engaging survivors in their new responsibilities of self-monitoring, self-reporting, and self-managing symptoms. PROs self-efficacy was a predictor of patient empowerment immediately following last dose of chemotherapy, but it is seldom assessed in clinical practice. With a decline in patient empowerment and no statistically significant changes in PROs self-efficacy and symptoms from last dose of chemotherapy to three months post-treatment, a qualitative study for conceptual clarification of patient empowerment in cancer survivors is needed, and further studies to investigate what other PROs and/or related concepts describe the decrease in patient empowerment and what PROs depict patient empowerment at transition points throughout early survivorship are logical next steps for research. A transition to cancer survivor-reported assessment with PROs self-efficacy and symptoms, demonstrating linearity in this study, immediately following last dose of chemotherapy treatment for breast, colorectal, lung, and gynecological cancer survivors, receiving care in a medical oncology clinic, may be a practical starting point; however, generalizability to more diverse populations is limited. Clinicians will need to expand their knowledge of patient empowerment and PROs to prepare themselves to engage cancer survivors to self-monitor, self-report, and self-manage in early survivorship. Oncology nurses are critical for envisioning how to transition from clinician-driven assessment to cancer survivor-reported assessment and implementing research-based interventions that build empowerment in cancer survivors. The investment of resources to train clinicians and survivors to implement PROs assessment tools in a community cancer center is value-added and necessary to empower cancer survivors in early survivorship to achieve optimal outcomes.

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