{"paper_id":"1aaab64e-da5c-4d77-aef0-5099d48a38bf","body_text":"A cross-sectional study was completed using baseline data from a\nrandomized controlled trial evaluating a web-based support system for\nindividuals within one year of treatment completion for localized PCa [ 14 ]. Individuals were eligible if they were\n(a) 18 years or older; (b) diagnosed with localized PCa; (c) within one year of\ntreatment completion; (d) had access to a computer with Internet; (e) able to\ncommunicate in English; and (f) competent to give consent. Recruitment occurred\nbetween the years of 2013 and 2016 at four Mid-Atlantic cancer centers. Research\nand clinic staff identified eligible participants through medical chart review.\nEligible participants were recruited during routine post-treatment clinic visits\nand research staff confirmed eligibility with interested participants. Enrolled\nparticipants provided written consent and completed the baseline assessment via\ntheir preferred method: online via REDCap, over the telephone, or via mail with\na pre-addressed and stamped return envelope. Institutional Review Board approval\nwas obtained at each study site. Participants received a $20 gift card after\ncompleting the baseline survey.\nAll study measures are validated with acceptable reliability and use\nhealth communication best practices. Demographic items included all variables\navailable from the baseline survey and medical records: age, race/ethnicity,\nmarital status, annual household income, and education. Medical variables\nincluded type of treatment completed [surgery, radiation (internal or external),\nor other (multiple treatment types or other treatment such as hormone therapy)],\ncomorbidities [ 15 ], health literacy\n[ 16 ], and clinically significant\ndepressive symptoms [ 17 ]. Clinically\ndepressive symptoms was dichotomized based on clinical cutoff of 9 or\nhigher.\nSelf-efficacy for re-entry  is an author-constructed\n14-item scale that measured participants’ self-efficacy to manage\naspects of their physical (e.g., manage treatment related fatigue),\ninterpersonal (e.g., maintain good relationships with friends), and mental\nhealth (e.g., manage stress, cope with fears about cancer recurrence) after\ncompleting treatment. Each item is assessed using an 11-point Likert-type\nscale from 0 ( not at all confident)  to 10\n( completely confident ). The scale also has four\nsubscales:  social support  (4 items),  healthy\nlifestyle  (2 items),  treatment side effect\ncoping  (5 items), and  emotional coping  (3\nitems). A mean score is calculated for the total scale and subscales with\nhigher scores indicating greater self-efficacy. The scale and subscales have\nacceptable internal reliability (αs>.70).\nParticipants’ perceptions of their  medical\ninteractions  (e.g., difficulty asking doctors questions,\ndoctor’s don’t explain what they are doing to me) was assessed\nusing a 5-item scale from the Cancer Rehabilitation Evaluation System [ 18 ]. Each item is assessed using a\n5-point Likert-type scale from 0 ( not much ) to 4\n( very much ). A scale sum is calculated with higher\nscores indicating a poorer evaluation of their medical interactions. The\nscale had acceptable internal reliability (α=.76).\nPractical concerns  were assessed using an adapted\n12-item scale that assessed participants’ concerns about managing the\npractical (i.e., tangible) aspects of their lives such as employment, diet\nand exercise, health insurance, and family responsibilities [ 19 ]. Each item is assessed using a 5-point\nLikert-type scale from 1 ( strongly disagree ) to 5\n( strongly agree ). A mean total score is calculated with\nhigher scores indicating greater concerns. The scale demonstrated high\ninternal reliability (α=.92).\nUnivariate statistics were completed for all variables (i.e.,\nfrequencies, means). Bivariate analyses were completed to assess the\nrelationship between demographic and medical variables (i.e., treatment\ncompleted, comorbidities, health literacy, depressive symptoms) with the outcome\nvariables. Non-parametric tests (e.g., Mann–Whitney U,\nKruskal–Wallis test) were used due to non-normality of the outcome\nvariables. Variables were included in the multivariable regression models if\nthey had a  p -value of .10 or less with the outcome variable.\nMultivariable linear regression analyses were completed to identify factors\nassociated with self-efficacy to re-entry, medical interactions, and practical\nconcerns. Analyses were completed using IBM SPSS Statistics version 24.\n\nA total of 431 participants were enrolled and completed the baseline survey.\nParticipants had a mean age of 63.53 (SD=7.09; Range=42–86) and\nwere predominantly Non-Hispanic White (72.8%) or Non-Hispanic Black (21.8%;  Table 1 ). A majority of participants were\nmarried (80.7%) and approximately half had a household income over $75,000 (55.2%).\nMost participants had surgery (61.4%) or radiation (25.6%). Approximately one in\nfour participants had clinically significant depressive symptoms (26.5%). Overall,\nparticipants reported high self-efficacy for re-entry (total score M=8.78, SD=1.11,\nmax score=10) with responses ranging from 3 to 10. Most participants reported\npositive interactions with their medical providers, (M=2.55, SD=3.18, max score=20).\nLastly, participants reported few practical concerns (M=1.76, SD=0.87, max score=5),\nhowever responses ranged from 0 to 5.\nTable 2  summarizes the\nmultivariable linear regression analysis for the self-efficacy for re-entry\ntotal score and subscales (social support, healthy lifestyle, treatment side\neffect coping, emotional coping). Variables included in the models for the\nself-efficacy for re-entry total score and four subscales were age,\nrace/ethnicity, marital status, income, education, comorbidities, health\nliteracy, and clinically significant depressive symptoms\n( ps <.10 in bivariate analyses with self-efficacy for\nre-entry total score).\nNon-Hispanic Black participants reported lower self-efficacy for\nre-entry compared to Non-Hispanic White participants\n( β =−.11,  p <.05).\nAdditionally, participants with greater income\n( β =.14,  p <.05) and greater\nhealth literacy ( β =.20,\n p <.001) had greater self-efficacy. Further,\nparticipants with greater number of comorbidities\n( β =−.09,  p <.05) or\nhaving clinically significant depressive symptoms\n( β =−.40,  p <.001) had\nsignificantly worse self-efficacy.\nNon-Hispanic Black participants had lower self-efficacy for\nmaintaining social support compared to Non-Hispanic White participants\n( β =−.11,  p <.05),\nas did participants who had clinically significant depressive symptoms\n( β =−.31,  p <.001).\nParticipants with greater health literacy reported greater self-efficacy for\nmaintaining social support ( β =.19,\n p <.001).\nParticipants with greater income ( β =.13,\n p <.05) and health literacy\n( β =.20,  p <.001) reported\ngreater self-efficacy for maintaining a healthy lifestyle. However,\nparticipants with clinically significant depressive symptoms had lower\nself-efficacy for maintaining a healthy lifestyle\n( β =−.34,  p <.001).\nNon-Hispanic Black participants reported significantly lower\nself-efficacy to cope with treatment side effects than Non-Hispanic White\nparticipants ( β =−.12,\n p <.05). Similarly, participants with more\ncomorbidities ( β =−.16,\n p <.05) or who had clinically significant depressive\nsymptoms ( β =−.32,\n p <.001) had lower self-efficacy. Participants with\ngreater income ( β =.17,\n p <.05) or health literacy\n( β =.17,  p <.05) reported\ngreater self-efficacy for coping with treatment side effects.\nParticipants who had clinically significant depressive symptoms\nreported lower self-efficacy for emotional coping\n( β =−.45,  p <.001).\nHowever, participants with greater income ( β  =.12,\n p <.05) or health literacy\n( β =.16,  p <.05), as well\nas older participants, had greater self-efficacy for emotional coping.\nTable 3  summarizes the\nmultivariable linear regression analyses for medical interactions. Variables\nincluded in the model were race/ethnicity, income, education, health literacy,\nand clinically significant depressive symptoms ( ps <.10\nin bivariate analyses). Non-Hispanic Black participants\n( β =.14,  p <.05) and\nparticipants of all other races ( β =.13,\n p <.05) reported poorer interactions with their\nmedical providers compared to Non-Hispanic White participants. Additionally,\nparticipants with clinically significant depressive symptoms had poorer\ninteractions with medical providers ( β = 27,\n p  <.001). Conversely, participants with greater\nincome ( β =−.11,  p <.05) or\nhealth literacy ( β =−.18,\n p <.05) reported better interactions with their medical\nproviders.\nTable 4  summarizes the\nmultivariable linear regression analyses for practical concerns. Variables\nincluded in the model were age, race/ethnicity, income, education, type of\ntreatment completed, health literacy, and clinically significant depressive\nsymptoms ( ps <.10 in bivariate analyses). Younger\nparticipants reported more practical concerns than older participants\n( β =−.23,  p <.001).\nAdditionally, participants of all other race/ethnicities [i.e., American Indian\nor Alaska Native (AI/AN), Asian, Hispanic] had more practical concerns than\nNon-Hispanic White participants ( β =.12,\n p <.05). Participants with greater income\n( β =−.19,  p <.001) or\nhealth literacy ( β =−.11,\n p <.05) had fewer practical concerns. Participants who\nhad surgery had more practical concerns than participants who had radiation\n( β =−.11,  p <.05).\nFinally, participants who had clinically significant depressive symptoms had\nmore practical concerns ( β =.26,\n p <.001).\n\nSeveral social and medical variables were significantly related to\nsupportive needs for adapting to new roles among individuals that completed\ntreatment for localized PCa. Notably, race/ethnicity, income, health literacy, and\nclinically significant depressive symptoms were significantly related to all three\nreadiness domains (i.e., self-efficacy for re-entry, medical interactions, practical\nconcerns). Additionally, age, comorbidities, and treatment completed were associated\nwith some of the domains. These findings suggest certain localized PCa patients may\nbe at greater risk for reduced coping ability, symptom management, and successfully\nreturning to previous or adapted roles. This study is the next step towards\nidentifying social and medical risk factors associated with supportive needs for\nindividuals in their first year post-treatment for localized PCa and provides a\nfoundation to future development and implementation of clinical support tools to\nhelp providers identify and support those at risk for continued poorer coping and\nmanagement.\nOur findings identified several disparities between Non-Hispanic White\nparticipants and participants of all other race/ethnicities. First, Non-Hispanic\nBlack participants reported significantly less self-efficacy for re-entry (total\nscore), as well as the social support and treatment side effects coping subscales,\ncompared to Non-Hispanic White participants. Second, both Non-Hispanic Black\nparticipants and participants of all other race/ethnicities reported significantly\nworse interactions with their medical providers compared to Non-Hispanic White\nparticipants. Finally, participants of all other race/ethnicities (i.e., AI/AN,\nAsian, Hispanic) had more practical concerns compared to Non-Hispanic White\nparticipants. These findings suggest individuals who do not identify as Non-Hispanic\nWhite are experiencing greater difficulties navigating their medical care after\ntreatment completion. While our study did not assess medical mistrust or provider\nimplicit racial bias, these may be negative characteristics of the current health\nsystem associated with individuals’ perceived quality of care,\npatient-provider communication, and supportive needs. Non-Hispanic Black, AI/AN, and\nHispanic patients have reported high rates medical mistrust with their medical\nproviders [ 20 – 26 ]. Patients’ medical mistrust is often rooted in\nthe patients’ belief that physicians did not respect them, discredited their\nsymptoms, [ 20 ] spent an inadequate amount of\ntime listening to the patients, and not sufficiently explaining treatment options\n[ 24 ]. Implicit bias is the\n“unconscious and involuntary attitudes which lie below the surface of\nconsciousness, but can influence affect, behavior, and cognitive processes”\nand has been linked to patient medical mistrust and satisfaction with care [ 27 ]. Oncologists with higher levels of implicit\nracial bias have less patient-centered communication and shorter interactions with\nNon-Hispanic Black patients, negatively impacting patient confidence in\nprovider-recommended treatments [ 28 ]. While\nbest practices for antiracist training have not yet been identified, implicit racial\nbias is present as early as the first year of medical training suggesting training\nshould begin as early as possible [ 27 ].\nHealth literacy has been linked to reduced physical, emotional, and\nfunctional well-being [ 29 – 31 ], poorer cancer care coordination [ 29 ,  32 ],\nand lower confidence in healthcare management [ 33 ]. Similarly, our study identified a positive association between\nhealth literacy and self-efficacy for re-entry and negative associations with\nquality of medical interactions and practical concerns. These findings suggest a\nneed for provider training to improve communication with patients with the goal to\nmeet supportive needs and improve adapting to roles in their daily lives during the\nre-entry period. As it is often difficult for providers to accurately assess patient\nhealth literacy, patient-provider communications training should focus on effective\ncommunication techniques across health literacy levels [ 34 ].\nFinancial toxicity—the financial burden faced by cancer\npatients—has been linked to overall poor quality of life, reduced quality of\ncare, and greater mortality risk [ 35 ].\nIndividuals under financial hardship report financial distress, dissatisfaction with\ntheir medical care, as well as medical cost and wage concerns and are at risk of\npoor overall well-being and depression [ 36 ].\nOur study identified associations between household income with supportive needs\ndomains among individuals that have completed treatment for localized PCa.\nParticipants with lower household income reported less self-efficacy for re-entry,\nincluding self-efficacy maintaining a healthy lifestyle and coping with treatment\nside effects and emotions; poorer interactions with their medical providers; and\nmore practical concerns (e.g., job, family, and social responsibilities, health\ninsurance). Our findings, along with the extant literature demonstrating the\npersistent harm of financial toxicity, illustrates the need for interventions such\nas supportive domestic help, financial assistance, expanding affordable care, and\nemployment protection policies to help individuals manage financial costs after\ncancer treatment while maintaining overall quality of life [ 37 ].\nApproximately 25% of participants in our study reported clinically\nsignificant depressive symptoms through the CES-D scale and is consistent with other\nstudies [ 38 ,  39 ]. Study participants with clinically significant depressive symptoms\nhad lower self-efficacy for re-entry, including all four subscales, poorer\ninteractions with medical providers, and more practical concerns. As individuals\nexperience clinical depression after PCa treatment completion at rates greater than\nthe general population [ 40 ,  39 ], depression immediately post-treatment may exacerbate\nindividuals’ ability to effectively manage treatment side effects and\nnavigate practical concerns (e.g., employment, relationships). Although depressive\nsymptoms often decrease during the first year post-treatment [ 41 ], depression has been linked to cancer-related and\ngeneral health worry [ 42 ], as well as\nfunctional difficulties years after treatment completion [ 42 ,  38 ]. The\nAmerican Cancer Society guidelines encourage depression screening and management for\nindividuals after PCa treatment. However, research suggests certain populations are\nat risk for missed depression diagnoses (e.g., Black participants, unemployment,\nyounger age, low income) [ 39 ] and one in four\ncancer patients may not be receiving adequate treatment for their depression [ 43 ]. Our findings suggest that not only should\nproviders consistently screen for depression among all individuals who have\ncompleted treatment for PCa and provide adequate management or refer to other\nproviders as needed, but also discuss post-treatment concerns—both medical\nand non-medical—among individuals with depression and provide appropriate\nresources and support.\nYounger participants reported more practical concerns and lower\nself-efficacy for emotional coping than older participants in our study. This may\ndue to greater perceived work and family obligations among younger individuals\ncompared to those that are reaching or in retirement. In fact, financial toxicity is\nmore commonly reported among younger individuals who have had cancer [ 44 ]. However, other studies have found older\nage is linked to reduced employment, early retirement, and longer sick leave [ 45 ]. Similarly, older individuals may differ in\ntheir perspectives and resources contributing to greater self-efficacy for emotional\ncoping. Additional research may be warranted to better understand the unique\nperceptions between younger and older individuals and the specific concerns they\nhave during this post-treatment phase.\nParticipants with greater comorbidities reported less self-efficacy for\nre-entry, including self-efficacy for managing treatment side effects. Research has\nlinked comorbidities with cancer-related symptoms and worry [ 42 ], symptom management [ 8 ], reduced employment status [ 45 ,  46 ], depression [ 39 ], and reduced quality of life [ 47 ,  48 ] among\nindividuals who have had cancer. Individuals treated for localized PCa with\ncomorbidities may have greater concern about managing both their cancer-related\nsymptoms alongside other illnesses. Medical providers should work together to build\na supportive plan with their patients to help to increase confidence during re-entry\nand ultimately maintain quality of life.\nFinally, our study identified greater practical concerns among participants\nthat had surgery compared to those that had radiation. While urinary incontinence\nand sexual dysfunction is greater among individuals that have surgery, urinary\nirritation is often worse among those that had radiation [ 49 ]. Research has found that while individuals that have\nsurgery for localized PCa treatment often report urinary incontinence, this does not\nimpact work ability [ 50 ]. However,\nexperiencing urinary incontinence may increase individuals’ perceptions about\nmanaging various aspects of their daily lives during the re-entry period. Providers\nshould discuss patients’ concerns with managing treatment side effects and\nrelated concerns about managing a healthy lifestyle and other responsibilities\n(e.g., family, job).\nAs the number of individuals that have successfully treated localized PCa\ncontinues to grow, researchers and medical providers must address the difficult\ntransition into routine daily roles after treatment completion. Our study identified\nseveral social and medical risk factors of supportive needs for re-entry\nillustrating gaps in current patient care that should be addressed. While cancer\npatients may have different experiences than individuals experiencing other chronic\nillness, our findings demonstrate some consistency with illnesses such as heart\ndisease [ 51 ], chronic kidney disease [ 52 ,  53 ],\nirritable bowel syndrome [ 54 ], and\nendometriosis [ 55 ], suggesting commonalities\nacross patient populations that may provide insight for future research. Our\nfindings also suggest additional research is warranted to confirm these social and\nmedical risk factors as well as effective, disseminable interventions that can be\neasily integrated into clinical care.\nOur number of enrolled participants that identified as American\nIndian/Native American, Asian, and Hispanic were too low to allow for\nrace/ethnicity-specific analyses. This limits our ability to understand the\nspecific psychosocial concerns among individuals of these race/ethnicities.\nFuture research should ensure recruitment plans that will allow for sufficient\nparticipant recruitment of various race/ethnicities that are often understudied\n[ 56 ,  57 ]. Our study also did not assess sexuality or gender identity.\nSexual and gender minorities often report poorer quality of life outcomes after\ntreatment for PCa and other cancers [ 58 ,\n 59 ] and poorer satisfaction with\nmedical care [ 60 ,  61 ], and extant literature has not adequately\nincluded sexual and gender minorities in research analyses, leaving a\nsignificant gap in our understanding of their needs [ 62 ]. Future research must assess sexual and gender\nidentity during data collection to begin filling this critical knowledge gap.\nAdditionally, our recruitment focused on localized PCa patients at four\nmid-Atlantic academic cancer centers—two National Cancer Institute\n(NCI)-Designated Comprehensive Cancer Centers, and one NCI-Designated Cancer\nCenter, and one academic, non-NCI-Designated cancer center. The patient care and\nresources at these academic, predominately NCI-Designated cancer centers may\ndiffer from other oncology care localized PCa patients may receive and limits\nour ability to understand if our findings are specific to those completing\ntreatment for localized PCa or if they persist across other patient populations.\nOur findings also may be limited in their generalizability outside of the U.S.\nas specific social factors may differ greatly (e.g., race/ethnicity and implicit\nbias, financial toxicity due to healthcare environment), while others may have\ncommonalities (e.g., depressive symptoms, age, health literacy). Further, as\nparticipant enrollment was for a larger randomized controlled trial evaluating a\nweb-based intervention, participant eligibility included access to a computer\nwith Internet. This eligibility requirement limits our evaluation of\npsychosocial concerns to those with possibly greater access to health\ninformation and resources.\nThis study identified several social and medical risk factors associated\nwith supportive needs for adapting in the first year post-treatment for\nlocalized PCa. Specifically, this study found four risk factors associated with\nthree supportive needs domains, highlighting a significant need for clinicians\nand researchers to evaluate and improve current patient-provider communication\npractices and support. Future research should further explore the perceptions of\nindividuals who completed treatment for localized PCa longitudinally to identify\nchanging supportive needs among this population over time, alongside the\nperspectives of clinicians, including oncologists and family medicine\nphysicians, nurses, and other medical providers, to develop and implement\npractice guidelines to help individuals manage the medical and non-medical\naspects of their daily lives.","source_license":"CC-BY-4.0","license_restricted":false}