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Prevalence and correlates of fear of recurrence among oral and oropharyngeal cancer survivors

Manne, Sharon L; Hudson, Shawna V; Preacher, Kristopher J; Imanguli, Matin; Pesanelli, Morgan; Frederick, Sara; Singh, Neetu; Schaefer, Alexis; Van Cleave, Janet H
PURPOSE/OBJECTIVE:Fear of recurrence (FoR) is a prevalent and difficult experience among cancer patients. Most research has focused on FoR among breast cancer patients, with less attention paid to characterizing levels and correlates of FoR among oral and oropharyngeal cancer survivors. The purpose was to characterize FoR with a measure assessing both global fears and the nature of specific worries as well as evaluate the role of sociodemographic and clinical factors, survivorship care transition practices, lifestyle factors, and depressive symptoms in FoR. METHODS:Three hundred eighty-nine oral and oropharyngeal survivors recruited from two cancer registries completed a survey assessing demographics, cancer treatment, symptoms, alcohol and tobacco use, survivorship care practices, depression, and FoR. RESULTS:Forty percent reported elevated global FoR, with similar percentages for death (46%) and health worries (40.3%). Younger, female survivors and survivors experiencing more physical and depressive symptoms reported more global fears and specific fears about the impact of recurrence on roles, health, and identity, and fears about death. Depression accounted for a large percent of the variance. Lower income was associated with more role and identity/sexuality worries, and financial hardship was associated with more role worries. CONCLUSIONS:FoR is a relatively common experience for oral and oropharyngeal cancer survivors. Many of its correlates are modifiable factors that could be addressed with multifocal, tailored survivorship care interventions. IMPLICATIONS FOR CANCER SURVIVORS/CONCLUSIONS:Assessing and addressing depressive symptoms, financial concerns, expected physical symptoms in the first several years of survivorship may impact FoR among oral and oropharyngeal cancer survivors.
PMID: 37584880
ISSN: 1932-2267
CID: 5618552

Enhancing Self-care Among Oral Cancer Survivors: Protocol for the Empowered Survivor Trial

Manne, Sharon L.; Imanguli, Matin; Kashy, Deborah; Pesanelli, Morgan; Frederick, Sara; Van Cleave, Janet H.; Paddock, Lisa; Hudson, Shawna; Steinberg, Michael; Clifford, Patrick; Domider, Mara; Singh, Neetu
Background: Survivors of oral cavity and oropharyngeal cancer frequently experience difficulties in swallowing; tasting; speaking; chewing; and maintaining comfortable movements of the head, neck, and shoulder. Engagement in regular self-care can reduce further loss of function and mitigate late effects. Despite the substantial self-care requirements, there are no empirically based interventions to enhance the skills and confidence of these survivors in managing their ongoing care. Objective: The aim of this study is to describe the rationale and methodology for a randomized controlled trial evaluating Empowered Survivor (ES) versus Springboard Beyond Cancer, a general web-based program for cancer survivors, on self-efficacy in managing care, preparedness for managing survivorship, and health-related quality of life (QOL). Methods: This study will recruit a total of 600 individuals who were diagnosed with oral cavity or oropharyngeal cancer in the past 3 years and are currently cancer free primarily from state cancer registries; these individuals will be randomly assigned to either the ES or Springboard Beyond Cancer condition. The participants complete measures of self-efficacy in managing care, preparedness for survivorship, health-related QOL, and engagement in oral self-examination and head and neck strengthening and flexibility exercises at baseline and 2 and 6 months after baseline. The primary aim of this study is to evaluate the impact of ES versus Springboard Beyond Cancer on self-efficacy, preparedness, and health-related QOL. The secondary aim is to examine the mediators and moderators of ES"™s impact on self-efficacy in managing care, preparedness, and health-related QOL at 6 months. The exploratory aim is to conduct a process evaluation of ES to identify potential oncology or community settings for future implementation. Results: Multilevel modeling will be used to examine whether there are significant differences between the ES and Springboard Beyond Cancer interventions over time. Mediational models will evaluate the indirect effects of ES on outcomes. Quantitative analyses will evaluate the predictors of ES use, and qualitative analyses will evaluate the preferred timing and settings for the implementation of ES. Conclusions: This randomized controlled trial evaluates a completely web-based intervention, ES, versus a general web-based program for cancer survivors, Springboard Beyond Cancer, on self-efficacy in managing care, preparedness for managing survivorship, and health-related QOL and identifies the putative mediators and moderators of the intervention"™s effects. If an effect on the primary outcomes is illustrated, the next step could be an implementation trial to evaluate the intervention"™s uptake in and impact on an oncology care setting or nonprofit organizations.
ISSN: 1929-0748
CID: 5446182


Van Cleave, Janet
ISSN: 0190-535x
CID: 5496322

Self-efficacy in managing post-treatment care among oral and oropharyngeal cancer survivors

Manne, Sharon L; Hudson, Shawna V; Kashy, Deborah A; Imanguli, Matin; Pesanelli, Morgan; Frederick, Sara; Van Cleave, Janet
OBJECTIVE:Physical and psychosocial effects of oral cancer result in long-term self-management needs. Little attention has been paid to survivors' self-efficacy in managing their care. Study goals were to characterise self-care self-efficacy and evaluate socio-demographics, disease, attitudinal factors and psychological correlates of self-efficacy and engagement in head and neck self-exams. METHODS:Two hundred thirty-two oral cancer survivors completed measures of socio-demographics, self-care self-efficacy, head and neck self-exams and attitudinal and psychological measures. Descriptive statistics characterised self-efficacy. Hierarchical regressions evaluated predictors of self-efficacy. RESULTS:Survivors felt moderately confident in the ability to manage self-care (M = 4.04, SD = 0.75). Survivors with more comorbidities (β = -0.125), less preparedness (β = 0.241), greater information (β = -0.191), greater support needs (β = -0.224) and higher depression (β = -0.291) reported significantly lower self-efficacy. Head and neck self-exam engagement (44% past month) was relatively low. Higher preparedness (OR = 2.075) and self-exam self-efficacy (OR = 2.606) were associated with more engagement in self-exams. CONCLUSION/CONCLUSIONS:Many survivors report low confidence in their ability to engage in important self-care practices. Addressing unmet information and support needs, reducing depressive symptoms and providing skill training and support may boost confidence in managing self-care and optimise regular self-exams.
PMID: 36151904
ISSN: 1365-2354
CID: 5374352

Data Quality of Automated Comorbidity Lists in Patients With Mental Health and Substance Use Disorders

Woersching, Joanna; Van Cleave, Janet H; Egleston, Brian; Ma, Chenjuan; Haber, Judith; Chyun, Deborah
EHRs provide an opportunity to conduct research on underrepresented oncology populations with mental health and substance use disorders. However, a lack of data quality may introduce unintended bias into EHR data. The objective of this article is describe our analysis of data quality within automated comorbidity lists commonly found in EHRs. Investigators conducted a retrospective chart review of 395 oncology patients from a safety-net integrated healthcare system. Statistical analysis included κ coefficients and a condition logistic regression. Subjects were racially and ethnically diverse and predominantly used Medicaid insurance. Weak κ coefficients (κ = 0.2-0.39, P < .01) were noted for drug and alcohol use disorders indicating deficiencies in comorbidity documentation within the automated comorbidity list. Further, conditional logistic regression analyses revealed deficiencies in comorbidity documentation in patients with drug use disorders (odds ratio, 11.03; 95% confidence interval, 2.71-44.9; P = .01) and psychoses (odds ratio, 0.04; confidence interval, 0.02-0.10; P < .01). Findings suggest deficiencies in automatic comorbidity lists as compared with a review of provider narrative notes when identifying comorbidities. As healthcare systems increasingly use EHR data in clinical studies and decision making, the quality of healthcare delivery and clinical research may be affected by discrepancies in the documentation of comorbidities.
PMID: 35234709
ISSN: 1538-9774
CID: 5176962

An Integrative Review on Factors Contributing to Fear of Cancer Recurrence Among Young Adult Breast Cancer Survivors

Gormley, Maurade; Ghazal, Lauren; Fu, Mei R; Van Cleave, Janet H; Knobf, Tish; Hammer, Marilyn
BACKGROUND:Fear of cancer recurrence (FCR) is the most prevalent need among breast cancer survivors. Age is the most consistent predictor of higher FCR, with prevalence rates as high as 70% among young adults. Although the association between age and higher FCR is well established, a more comprehensive understanding of the factors contributing to higher FCR among young adult breast cancer survivors is needed. OBJECTIVE:The purpose of this integrative review was to explore the factors associated with higher FCR among young adult breast cancer survivors (≤ 45 years old). METHODS:A literature search was conducted using PubMed, CINAHL, PsycINFO, and EMBASE databases with specific Medical Subject Headings terms delimited to FCR, diagnosis, sex, and age range. The initial search yielded 378 studies, 13 of which met the eligibility criteria. RESULTS:Themes include motherhood status, health behaviors and decision making (eg, surveillance behaviors and surgical decision making), psychological morbidity, and social support. Cognitive behavioral factors include cognitive processing, metacognition, illness intrusiveness, and self-efficacy. CONCLUSION/CONCLUSIONS:Fear of cancer recurrence among young adult breast cancer survivors is a unique construct requiring further exploration and tailored interventions to improve the health-related quality of life for this population. IMPLICATIONS FOR PRACTICE/CONCLUSIONS:Oncology nurses should screen all cancer survivors for FCR, with particular attention to the unique needs of young adults. Future research should address the role of age-appropriate support and increased levels of FCR during surveillance periods.
PMID: 32657897
ISSN: 1538-9804
CID: 4527872


Van Cleave, Janet H.; Concert, Catherine; Hu, Kenneth S.; Liang, Eva; Egleston, Brian L.
ISSN: 0190-535x
CID: 5246522

Pain Prevalence in Head and Neck Cancer [Meeting Abstract]

Van Cleave, Janet; Brooks, Christopher; Zahriah, Elise; Riccobene, Ann; Most, Allison; Liang, Eva; Concert, Catherine
ISSN: 1526-5900
CID: 5246592

A Scoping Review of Nursing's Contribution to the Management of Patients with Pain and Opioid Misuse

Van Cleave, Janet H; Booker, Staja Q; Powell-Roach, Keesha; Liang, Eva; Kawi, Jennifer
BACKGROUND:Nursing brings a unique lens to care of patients with pain and opioid misuse. AIMS/OBJECTIVE:This scoping review describes nursing's contribution to the literature on the management of patients with pain and opioid misuse, generating evidence to guide clinical care. DESIGN/METHODS:The scoping review was conducted according to Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Reviews guideline. DATA SOURCES/METHODS:Using combined key terms ("opioid misuse," "pain," "nursing") in systematic searches in PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) electronic databases, snowball technique, and personal knowledge resulted in 108 relevant articles, reports, and websites. ANALYSIS METHOD/UNASSIGNED:Summative approach to content analysis was used to quantify and describe nursing's contribution to the literature. RESULTS:Contributions of nurses emerged in the areas of research, clinical practice, policy, and education. The highest number of publications addressed research (50%, 54 of 108), whereas the fewest number of publications involved education (7%, 8 of 108). CONCLUSION/CONCLUSIONS:Results provide a picture of the breadth of expertise and crucial leadership that nurses contribute to influence management of patients with pain and opioid misuse. IMPLICATIONS FOR NURSING/CONCLUSIONS:This scoping review indicates the importance of continued support from key stakeholders, including training and interprofessional collaboration opportunities supported by the National Institutes of Health, to sustain nursing's contribution to quality care of patients with pain and opioid misuse. Ultimately, all health care professionals must collaborate to conduct rigorous research and construct evidence-based guidelines to inform policy initiatives and education strategies to solve the complex co-occurring epidemics of pain and opioid misuse.
PMID: 33414010
ISSN: 1532-8635
CID: 4771332

The usefulness of the Electronic Patient Visit Assessment (ePVA)© as a clinical support tool for real-time interventions in head and neck cancer

Van Cleave, Janet H; Fu, Mei R; Bennett, Antonia V; Concert, Catherine; Riccobene, Ann; Tran, Anh; Most, Allison; Kamberi, Maria; Mojica, Jacqueline; Savitski, Justin; Kusche, Elise; Persky, Mark S; Li, Zujun; Jacobson, Adam S; Hu, Kenneth S; Persky, Michael J; Liang, Eva; Corby, Patricia M; Egleston, Brian L
Background/UNASSIGNED:Patients with head and neck cancer (HNC) experience painful, debilitating symptoms and functional limitations that can interrupt cancer treatment, and decrease their health-related quality of life (HRQoL). The Electronic Patient Visit Assessment (ePVA) for head and neck is a web-based mHealth patient-reported measure that asks questions about 21 categories of symptoms and functional limitations common to HNC. This article presents the development and usefulness of the ePVA as a clinical support tool for real-time interventions for patient-reported symptoms and functional limitations in HNC. Methods/UNASSIGNED:Between January 2018 and August 2019, 75 participants were enrolled in a clinical usefulness study of the ePVA. Upon signing informed consent, participants completed the ePVA and the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ) general (C30) questionnaire v3.0 (scores range from 0 to 100 with 100 representing best HRQoL). Clinical usefulness of the ePVA was defined as demonstration of reliability, convergent validity with HRQoL, and acceptability of the ePVA (i.e., >70% of eligible participants complete the ePVA at two or more visits and >70% of ePVA reports are read by providers). Formal focus group discussions with the interdisciplinary team that cared for patients with HNC guided the development of the ePVA as a clinical support tool. Qualitative and quantitative methods were used throughout the study. Descriptive statistics consisting of means and frequencies, Pearson correlation coefficient, and Student's t-tests were calculated using SAS 9.4 and STATA. Results/UNASSIGNED:The participants were primarily male (71%), White (76%), diagnosed with oropharyngeal or oral cavity cancers (53%), and undergoing treatment for HNC (69%). Data analyses supported the reliability (alpha =0.85), convergent validity with HRQoL scores, and acceptability of the ePVA. Participants with the highest number of symptoms and functional limitations reported significantly worse HRQoL (sum of symptoms: r=-0.50, P<0.0001; sum of function limitations: r=-0.56, P<0.0001). Ninety-two percent of participants (59 of 64) who had follow-up visits within the 6-month study period completed the ePVA at two or more visits and providers read 89% (169 of 189) of automated ePVA reports. The use of the ePVA as a clinical support tool for real-time interventions for symptoms and functional limitations reported by patients is described in a clinical exemplar. Conclusions/UNASSIGNED:This research indicates that the ePVA may be a useful mHealth tool as a clinical support tool for real-time interventions for patient-reported symptoms and functional limitations in HNC. The study findings support future translational research to enhance the usefulness of the ePVA in real world settings for early interventions that decrease symptom burden and improve the QoL of patients with HNC.
PMID: 33634190
ISSN: 2306-9740
CID: 4795022