Andrea Barsevick

Background: As of 2016, almost 16 million individuals were cancer survivors, including over 3.5 million survivors of breast cancer. Because cancer survivors are living longer and have unique health care needs, the Institute of Medicine proposed a survivor care plan as a way to alleviate the many medical, emotional, and care coordination problems of survivors. Objective: This pilot study for breast cancer survivors was undertaken to: (1) examine self-reported changes in knowledge, confidence, and activation from before receipt to after receipt of a survivor care plan; and (2) describe survivor preferences for, and satisfaction with, a technology-based survivor care plan. Methods: A single group pretest-posttest design was used to study breast cancer survivors in an academic cancer center and a community cancer center during their medical visit after they completed chemotherapy. The intervention was a technology-based survivor care plan. Measures were taken before, immediately after, and 1 month after receipt of the survivor care plan. Results: A total of 38 breast cancer survivors agreed to participate in the study. Compared to baseline levels before receipt of the survivor care plan, participants reported increased knowledge both immediately after its receipt at the academic center (P<.001) and the community center (P<.001) as well as one month later at the academic center (P=.002) and the community center (P<.001). Participants also reported increased confidence immediately following receipt of the survivor care plan at the academic center (P=.63) and the community center (P=.003) and one month later at both the academic center (P=.63) and the community center (P<.001). Activation was increased from baseline to post-survivor care plan at both the academic center (P=.05) and community center (P<.001) as well as from baseline to 1-month follow-up at the academic center (P=.56) and the community center (P<.001). Overall, community center participants had lower knowledge, confidence, and activation at baseline compared with academic center participants. Overall, 22/38 (58%) participants chose the fully functional electronic survivor care plan. However, 12/23 (52%) in the community center group chose the paper version compared to 4/15 (27%) in the academic center group. Satisfaction with the format (38/38 participants) and the content (37/38 participants) of the survivor care plan was high for both groups. Conclusions: This study provides evidence that knowledge, confidence, and activation of survivors were associated with implementation of the survivor care plan. This research agrees with previous research showing that cancer survivors found the technology-based survivor care plan to be acceptable. More research is needed to determine the optimal approach to survivor care planning to ensure that all cancer survivors can benefit from it.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: As of 2016, almost 16 million individuals were cancer survivors, including over 3.5 million survivors of breast cancer. Because cancer survivors are living longer and have unique health care needs, the Institute of Medicine proposed a survivor care plan as a way to alleviate the many medical, emotional, and care coordination problems of survivors. Objective: This pilot study for breast cancer survivors was undertaken to: (1) examine self-reported changes in knowledge, confidence, and activation from before receipt to after receipt of a survivor care plan; and (2) describe survivor preferences for, and satisfaction with, a technology-based survivor care plan. Methods: A single group pretest-posttest design was used to study breast cancer survivors in an academic cancer center and a community cancer center during their medical visit after they completed chemotherapy. The intervention was a technology-based survivor care plan. Measures were taken before, immediately after, and 1 month after receipt of the survivor care plan. Results: A total of 38 breast cancer survivors agreed to participate in the study. Compared to baseline levels before receipt of the survivor care plan, participants reported increased knowledge both immediately after its receipt at the academic center (P<.001) and the community center (P<.001) as well as one month later at the academic center (P=.002) and the community center (P<.001). Participants also reported increased confidence immediately following receipt of the survivor care plan at the academic center (P=.63) and the community center (P=.003) and one month later at both the academic center (P=.63) and the community center (P<.001). Activation was increased from baseline to post-survivor care plan at both the academic center (P=.05) and community center (P<.001) as well as from baseline to 1-month follow-up at the academic center (P=.56) and the community center (P<.001). Overall, community center participants had lower knowledge, confidence, and activation at baseline compared with academic center participants. Overall, 22/38 (58%) participants chose the fully functional electronic survivor care plan. However, 12/23 (52%) in the community center group chose the paper version compared to 4/15 (27%) in the academic center group. Satisfaction with the format (38/38 participants) and the content (37/38 participants) of the survivor care plan was high for both groups. Conclusions: This study provides evidence that knowledge, confidence, and activation of survivors were associated with implementation of the survivor care plan. This research agrees with previous research showing that cancer survivors found the technology-based survivor care plan to be acceptable. More research is needed to determine the optimal approach to survivor care planning to ensure that all cancer survivors can benefit from it.

126 Background: Comorbidities and treatment-related symptoms (sx) affect overall function and may impact return to work. We evaluated SF-12 physical and mental functioning in CRC working (W) and non-working (NW) survivors. Methods: 300 Stage I-III CRC survivors age 25-70 years identified by PA Cancer Registry who completed curative therapy 3-5 years prior to study and were employed at diagnosis were surveyed with validated measures via mail-survey procedures. Current work status (working/not working), demographics, and medical factors (diagnosis, treatment, comorbidities) were assessed, as was fatigue, insomnia, distress, cognitive sx, neuropathy, bowel sx, and urinary sx. Study approved by PA Department of Health; participants (pts) provided informed consent. Results: Pts average age 57 yrs (80% < 65 yrs), 56% male, 87% white, 67% educated beyond high school, 73% married. 56% had rectal cancer, 51% had chemotherapy, 39% had radiation therapy, 16% had an ostomy. Work status at survey: 226 pts (75%) W; 74 pts (25%) NW. Higher comorbidity number was associated with lower physical (PCS) component scores in both W and NW groups (p = 0.004 and 0.013), and with lower mental (MCS) component scores in the NW group (p = 0.004). Among W pts, predictors of lower PCS were fatigue (p = 0.001), bowel problems (p < 0.001), neuropathy (p = 0.009), and being male (p = 0.03). Predictors of lower MCS were fatigue (p = 0.003), cognitive issues (p < 0.001), and distress (p < 0.001). Among NW pts, predictors of lower PCS were fatigue (p = 0.02), neuropathy (p = 0.007), ostomy presence (p = 0.015), and being unmarried (p = 0.007). Predictors of lower MCS were distress (p < 0.001) and younger age (p = 0.007). Conclusions: Both W and NW CRC survivors have significant comorbidity and sx burden associated with poorer physical and mental functioning. Fatigue, neuropathy, and distress were predictors in both groups, while cognitive and bowel sx predicted poorer function among W survivors. Intervening on these modifiable sx may increase survivors’ return to work and improve functioning for those who do. Next steps will focus on intensive management of modifiable sx to determine the effect on physical and mental functioning and potential for returning to work after treatment.

Diarrhea is a common toxicity of chemotherapy, but the practice of reporting only severe grades (≥ 3) in clinical trials results in misleading conclusions of significance. Epidemiology remains poorly described, and effects of multi-cycle regimens have not been investigated. To better understand the risks, symptom burden and consequences of CID, we studied patients receiving chemotherapy for colorectal cancer (CRC). One hundred and fourteen patients receiving FOLFOX (95 patients, 530 cycles), FOLFOX + monoclonal antibodies (10 patients, 49 cycles) or FOLFIRI (9 patients, 50 cycles) were enrolled. CID was identified from diaries at baseline and daily during up to 8 chemotherapy cycles using supplemental questions on the Oral Mucositis Daily Questionnaire, a valid tool for collecting patient-reported outcomes of regimen-related mucosal injury. Patients scored CID severity from 0 “none” to 10 “worst possible,” and quantity from “little” to “severe” on a 5-point scale. Quality of life was measured using the FACT-G, and fatigue using the FACIT fatigue scale. CID occurred in 89 % of patients on FOLFIRI, 50 % on FOLFOX + monoclonal antibodies and 56 % on FOLFOX alone. The risk of a first episode was highest during Cycle 1 (35 %) and dropped to <10 % during Cycles 3–5. Patients with CID reported poorer quality of life scores than those without CID (77.1 vs 80.7). Diarrhea occurs more commonly than typically appreciated during chemotherapy for CRC. Risk is highest during first exposure, suggesting variable susceptibility. Identification of this high-risk subgroup for prophylaxis could improve the quality of life.

1561 Background: There is now compelling evidence of a genetic foundation for patient-reported quality of life (QOL) domains. This work reports the results of a systematic review of thebiological pathways, candidate genes and molecular markers involved in fatigue, pain, negative (depressed mood) and positive (well-being/happiness) emotional functioning, social functioning, and overall QOL. Methods: We followed a purposeful search algorithm of existing literature to capture empirical papers investigating the relationship between biological pathways and molecular markers and the identified QOL domains. We conducted a computerized literature search on PubMed for the years November 2007- November 2012 to build on our previous work (Sprangers, QOLR, 2009). A gene or molecular marker was included if there is at least one publication (either empirical, meta-analysis or review) reporting a significant association with a QOL domain. Results: More than 200 articles were identified and reviewed. Multiple major biological pathways are involved in each QOL domain, summarized into a series of seven tables describing each biological pathway and candidate gene. The inflammatory pathway has the strongest evidence as a controlling mechanism underlying fatigue. Inflammation and neurotransmission are key processes involved in pain perception and the COMT gene is associated with multiple sorts of pain. The neurotransmitter and neuroplasticity theories have the strongest evidence for their relationship with depression. Oxytocin-related genes and genes involved in the serotonergic and dopaminergic pathways play a role in social functioning. Inflammatory pathways, via cytokines, also play an important role in overall QOL. In total, more than 50 candidate genes were identified as having previously published evidence of at least a preliminary relationship with patient-reported QOL-related domains. Conclusions: We have produced a set of candidate genes and biological pathways for researchers to use when embarking on studies relating candidate genes and/or molecular markers to QOL.

Background There is compelling evidence of a genetic foundation of patient-reported quality of life (QOL). Given the rapid development of substantial scientific advances in this area of research, the current paper updates and extends reviews published in 2010. Objectives The objective was to provide an updated overview of the biological pathways, candidate genes, and molecular markers involved in fatigue, pain, negative (depressed mood) and positive (well-being/happiness) emotional functioning, social functioning, and overall QOL. Methods We followed a purposeful search algorithm of existing literature to capture empirical papers investigating the relationship between biological pathways and molecular markers and the identified QOL domains. Results Multiple major pathways are involved in each QOL domain. The inflammatory pathway has the strongest evidence as a controlling mechanism underlying fatigue. Inflammation and neurotransmission are key processes involved in pain perception, and the catechol-O-methyltransferase (COMT) gene is associated with multiple sorts of pain. The neurotransmitter and neuroplasticity theories have the strongest evidence for their relationship with depression. Oxytocin-related genes and genes involved in the serotonergic and dopaminergic pathways play a role in social functioning. Inflammatory pathways, via cytokines, also play an important role in overall QOL. Conclusions Whereas the current findings need future experiments and replication efforts, they will provide researchers supportive background information when embarking on studies relating candidate genes and/or molecular markers to QOL domains. The ultimate goal of this area of research is to enhance patients’ QOL.

Background: Comparing subgroups with different patterns of change in symptom intensity would assist in sorting out individuals at risk for more severe symptoms and worse functional outcomes. Objectives: The objectives of this study were to identify and compare subgroups of breast cancer patients with different patterns of change in a psychoneurological symptom cluster intensity across the treatment trajectory. Methods: This secondary analysis used the data from 160 breast cancer patients undergoing chemotherapy or radiation treatment. Psychoneurological symptom cluster intensity was a composite score of 5 symptoms (depressed mood, cognitive disturbance, fatigue, insomnia, and pain) in a psychoneurological cluster at each of 3 time points (ie, at baseline and at 2 follow-ups after chemotherapy or radiation treatment). Results: Five distinct subgroups representing different patterns of psychoneurological symptom cluster intensity during breast cancer treatment were identified: the gradually increasing pattern subgroup (group 1), the constantly low pattern subgroup (group 2), the start low with dramatic increase and decrease pattern subgroup (group 3), the constantly high pattern subgroup (group 4), and the start high with dramatic decrease and leveling pattern subgroup (group 5). Patients without previous cancer treatment experience, with higher level of education, treated with chemotherapy, and/or with more limitations at the baseline were more likely to follow the pattern group 4. Patients in group 4 had the most serious functional limitations measured at the second follow-up time point. Conclusion: The results suggest the need to evaluate interventions for specific subgroups and to examine the causal mechanisms underlying a psychoneurological symptom cluster. Implication: Clinicians should consider these diverse symptom experiences for assessment/management.