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Item Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer(MDPI, 2022-12-21) Srinivas, Meghana; Kaye, Erica C.; Blazin, Lindsay J.; Baker, Justin N.; Mack, Jennifer W.; DuBois, James M.; Sisk, Bryan A.; Pediatrics, School of MedicineEffective communication is integral to patient and family-centered care in pediatric and adolescent and young adult (AYA) oncology and improving healthcare delivery and outcomes. There is limited knowledge about whether AYAs and parents have similar communication preferences and needs. By eliciting and comparing communication advice from AYAs and parents, we can identify salient guidance for how clinicians can better communicate. We performed secondary analysis of semi-structured interviews from 2 qualitative communication studies. In one study, 80 parents of children with cancer during treatment, survivorship, or bereavement were interviewed. In the second study, AYAs with cancer during treatment or survivorship were interviewed. We asked AYAs and parents to provide communication advice for oncology clinicians. Using thematic analysis, we identified categories of advice related to three overarching themes: interpersonal relationships, informational preferences, and delivery of treatment, resources, and medical care. AYAs and parents provided similar advice about the need for compassion, strong connections, hopefulness, commitment, and transparent honesty However, AYAs placed additional emphasis on clinicians maintaining a calm demeanor.Item Challenges and opportunities identifying therapeutic targets for chemotherapy-induced peripheral neuropathy resulting from oxidative DNA damage(Wolters Kluwer, 2017-01) Kelley, Mark R.; Fehrenbacher, Jill C.; Department of Pharmacology and Toxicology, IU School of MedicineItem Communicating Critical Information to Cancer Survivors: an Assessment of Survivorship Care Plans in Use in Diverse Healthcare Settings(Springer, 2021) Lyson, Helena C.; Haggstrom, David; Bentz, Michael; Obeng-Gyasi, Samilia; Dixit, Niharika; Sarkar, Urmimala; Medicine, School of MedicinePurpose: Survivorship care plans (SCPs) serve to communicate critical information needed for cancer survivors’ long-term follow-up care. The extent to which SCPs are tailored to meet the specific needs of underserved patient populations is understudied. To fill this gap, this study aimed to assess the content and communication appropriateness of SCPs collected from diverse health care settings. Methods: We analyzed collected SCPs (n=16) for concordance with Institute of Medicine (IOM) recommendations for SCP content and for communication appropriateness using the Suitability Assessment of Materials (SAM) instrument. Results: All plans failed to incorporate all IOM criteria, with the majority of plans (n=11) incorporating less than 60% of recommended content. The average reading grade level of all the plans was 14, and only one plan received a superior rating for cultural appropriateness. Conclusion: There is significant variation in the format and content of SCPs used in diverse hospital settings and most plans are not written at an appropriate reading grade level nor tailored for underserved and/or minority patient populations. Implications for Cancer Survivors: Co-designing SCPs with diverse patient populations is crucial to ensure that these documents are meeting the needs and preferences of all cancer survivors.Item Correlates of Frailty in Older Female Cancer Survivors(Elsevier, 2024) Rio, Carielle Joy; Saligan, Leorey N.; Li, Xiaobai; Crouch, Adele; Von Ah, Diane; School of NursingIntroduction: Cancer survivors are at risk of frailty because of cancer and its treatment. Understanding the factors that increase the risk of frailty is an important aspect of cancer care for the development of interventions to prevent or manage frailty, thus improving cancer survival and overall quality of life of cancer survivors. This study aimed to identify demographic, clinical, and psychosocial correlates of frailty in older, female cancer survivors. Materials and Methods: This is a sub-study focusing on the exploratory aim of a larger cross-sectional study (NURS-IIR-IUSCC-0748). A total of 213 female cancer survivors aged 59–87 years old were included from the parent study in the current analysis. Frailty, the primary outcome, was measured using the Tilburg Frailty Indicator scale. The independent variables were age, relationship status, clinical stage of cancer, treatment type, comorbidity, depression, affect, optimism, stress, and social support. Stepwise linear regression modeling identified the independent variables that were significantly associated with frailty. Results: The final regression model revealed that high patient-reported stress and depression, comorbidity, not being married or living with a partner, and low positive affect were significantly associated with worsening frailty in this population. Discussion: Understanding the context of frailty is important for the design of interventions that target factors known to be associated with frailty in older cancer survivors. Further validation with a larger and a more diverse sample from a broad spectrum of sociodemographic and clinical population would fully account for the multiple independent variables influencing frailty in cancer survivors.Item How to Manage Cisplatin-Based Chemotherapy-Related Cardiovascular Disease in Patients With Testicular Cancer(Elsevier, 2022-09-20) Kadambi, Sindhuja; Clasen, Suparna C.; Fung, Chunkit; Medicine, School of MedicineItem Insurance, chronic health conditions, and utilization of primary and specialty outpatient services: a Childhood Cancer Survivor Study report(Springer, 2018-10) Mueller, Emily L.; Park, Elyse R.; Kirchhoff, Anne C.; Kuhlthau, Karen; Nathan, Paul C.; Perez, Giselle; Rabin, Julia; Hutchinson, Raymond; Oeffinger, Kevin C.; Robison, Leslie L.; Armstrong, Gregory T.; Leisenring, Wendy M.; Donelan, Karen; Medicine, School of MedicinePURPOSE: Survivors of childhood cancer require life-long outpatient healthcare, which may be impacted by health insurance. This study sought to understand survivors' utilization of outpatient healthcare provider services. METHODS: The study examined cross-sectional survey data using an age-stratified sample from the Childhood Cancer Survivor Study of self-reported annual use of outpatient services. Multivariable logistic regression analyses were used to identify risk factors associated with utilization of services. RESULTS: Six hundred ninety-eight survivors were surveyed, median age 36.3 years (range 22.2-62.6), median time from diagnosis 28.8 years (range 23.1-41.7). Almost all (93%) of survivors had at least one outpatient visit during the previous year; 81.3% of these visits were with a primary care providers (PCP), 54.5% were with specialty care physicians, 30.3% were with nurse practitioner/physician's assistants (NP/PA), and 14.2% were with survivorship clinic providers. Survivors with severe to life-threatening chronic health conditions had greater odds of utilizing a specialty care physician (OR = 5.15, 95% CI 2.89-9.17) or a survivorship clinic (OR = 2.93, 95% CI 1.18-7.26) than those with no chronic health conditions. Having health insurance increased the likelihood of seeking care from NP/PA (private, OR = 2.76, 95% CI 1.37-5.58; public, OR = 2.09, 95% CI 0.85-5.11), PCP (private, OR = 7.82, 95% CI 3.80-13.10; public, OR = 7.24, 95% CI 2.75-19.05), and specialty care (private, OR = 2.96, 95% CI 1.48-5.94; public, OR = 2.93, 95% CI 1.26-6.84) compared to without insurance. CONCLUSION: Most childhood cancer survivors received outpatient care from a PCP, but a minority received care from a survivorship clinic provider. Having health insurance increased the likelihood of outpatient care. IMPLICATIONS FOR CANCER SURVIVORS: Targeted interventions in the primary care setting may improve risk-based, survivor-focused care for this vulnerable population.Item Loneliness and mental health during the COVID‐19 pandemic in older breast cancer survivors and noncancer controls(Wiley, 2021-10-01) Rentscher, Kelly E.; Zhou, Xingtao; Small, Brent J.; Cohen, Harvey J.; Dilawari, Asma A.; Patel, Sunita K.; Bethea, Traci N.; Van Dyk, Kathleen M.; Nakamura, Zev M.; Ahn, Jaeil; Zhai, Wanting; Ahles, Tim A.; Jim, Heather S.L.; McDonald, Brenna C.; Saykin, Andrew J.; Root, James C.; Graham, Deena M.A.; Carroll, Judith E.; Mandelblatt, Jeanne S.; Radiology and Imaging Sciences, School of MedicineBackground: The coronavirus disease 2019 (COVID-19) pandemic has had wide-ranging health effects and increased isolation. Older with cancer patients might be especially vulnerable to loneliness and poor mental health during the pandemic. Methods: The authors included active participants enrolled in the longitudinal Thinking and Living With Cancer study of nonmetastatic breast cancer survivors aged 60 to 89 years (n = 262) and matched controls (n = 165) from 5 US regions. Participants completed questionnaires at parent study enrollment and then annually, including a web-based or telephone COVID-19 survey, between May 27 and September 11, 2020. Mixed-effects models were used to examine changes in loneliness (a single item on the Center for Epidemiologic Studies-Depression [CES-D] scale) from before to during the pandemic in survivors versus controls and to test survivor-control differences in the associations between changes in loneliness and changes in mental health, including depression (CES-D, excluding the loneliness item), anxiety (the State-Trait Anxiety Inventory), and perceived stress (the Perceived Stress Scale). Models were adjusted for age, race, county COVID-19 death rates, and time between assessments. Results: Loneliness increased from before to during the pandemic (0.211; P = .001), with no survivor-control differences. Increased loneliness was associated with worsening depression (3.958; P < .001) and anxiety (3.242; P < .001) symptoms and higher stress (1.172; P < .001) during the pandemic, also with no survivor-control differences. Conclusions: Cancer survivors reported changes in loneliness and mental health similar to those reported by women without cancer. However, both groups reported increased loneliness from before to during the pandemic that was related to worsening mental health, suggesting that screening for loneliness during medical care interactions will be important for identifying all older women at risk for adverse mental health effects of the pandemic.Item Oncologists' perspectives on post-cancer treatment communication and care coordination with primary care physicians(Wiley, 2017-07) Klabunde, Carrie N.; Haggstrom, David; Kahn, Katherine L.; Gray, Stacy W.; Kim, Benjamin; Liu, Benmei; Eisenstein, Jana; Keating, Nancy L.; Medicine, School of MedicinePost-treatment cancer care is often fragmented and of suboptimal quality. We explored factors that may affect cancer survivors' post-treatment care coordination, including oncologists' use of electronic technologies such as e-mail and integrated electronic health records (EHRs) to communicate with primary care physicians (PCPs). We used data from a survey (357 respondents; participation rate 52.9%) conducted in 2012-2013 among medical oncologists caring for patients in a large US study of cancer care delivery and outcomes. Oncologists reported their frequency and mode of communication with PCPs, and role in providing post-treatment care. Seventy-five per cent said that they directly communicated with PCPs about post-treatment status and care recommendations for all/most patients. Among those directly communicating with PCPs, 70% always/usually used written correspondence, while 36% always/usually used integrated EHRs; telephone and e-mail were less used. Eighty per cent reported co-managing with PCPs at least one post-treatment general medical care need. In multivariate-adjusted analyses, neither communication mode nor intensity were associated with co-managing survivors' care. Oncologists' reliance on written correspondence to communicate with PCPs may be a barrier to care coordination. We discuss new research directions for enhancing communication and care coordination between oncologists and PCPs, and to better meet the needs of cancer survivors post-treatment.Item The Association between Relationship Satisfaction Concordance and Breast Cancer Survivors’ Physical and Psychosocial Well-Being(MDPI, 2024-01-08) Vachon, Eric A.; Krueger, Ellen; Haggstrom, David A.; Champion, Victoria L.; School of NursingThe purpose of this article is to examine the association of relationship satisfaction concordance between breast cancer survivors (BCSs) and their partners with matched controls on physical and psychosocial outcomes. Dyads of BCSs, age-matched controls, and partners were recruited as part of a larger, cross-sectional QOL survey study. Relationship concordance was measured by the ENRICH marital satisfaction score, with each dyad's score equaling the absolute value of the difference in satisfaction between survivor/control and their partner (lower score = greater concordance). Dependent variables for survivors/controls were social constraint, physical function, depression, fatigue, attention function, and sleep disturbance. Relationship satisfaction and concordance were used as the primary independent variables, while controlling for dyad category, race, education, income, and age within multiple linear regression models. The sample consisted of 387 dyads (220 BCSs, 167 controls). Relationship satisfaction concordance ranged from 0 to 53.4 (mean = 10.2). The BCS dyads had significantly worse concordance (11.1) than the controls (9.1) (p = 0.050). Within the multiple regression models, lower concordance was significantly associated with increased social constraint (p = 0.029), increased depression (p = 0.038), and increased fatigue (p = 0.006). Poor relationship satisfaction and concordance were significantly associated with poor physical and psychosocial outcomes. The maintenance of relationships should remain a focus through difficulties of cancer and into survivorship for survivors, partners, and providers.Item Uses of Personal Health Records for Communication Among Colorectal Cancer Survivors, Caregivers, and Providers: Interview and Observational Study in a Human-Computer Interaction Laboratory(JMIR, 2022-01-25) Haggstrom, David A.; Carr, Thomas; Medicine, School of MedicineBackground: Personal health records (PHRs) may be useful for patient self-management and participation in communication with their caregivers and health care providers. As each potential participant's role is different, their perception of the best uses of a PHR may vary. Objective: The perspectives of patients, caregivers, and providers were all evaluated concurrently in relation to a PHR developed for colorectal cancer (CRC) survivors. Methods: We explored group perceptions of a CRC PHR prototype. Scenario-based testing across eight use cases, with semistructured follow-up interviews, was videotaped in a human-computer interaction laboratory with patients, caregivers, and health care providers. Providers included oncologists, gastroenterologists, and primary care physicians. Discrete observations underwent grounded theory visual affinity analysis to identify emergent themes. Results: Observations fell into three major themes: the network (who should be granted access to the PHR by the patient), functions (helpful activities the PHR enabled), and implementation (how to adopt the PHR into workflow). Patients wanted physician access to their PHR, as well as family member access, especially when they lived at a distance. All groups noted the added value of linking the PHR to an electronic health record, self-tracking, self-management, and secure messaging. Patients and caregivers also saw information in the PHR as a useful memory tool given their visits to multiple doctors. Providers had reservations about patients viewing raw data, which they were not prepared to interpret or might be inaccurate; patients and caregivers did not express any reservations about having access to more information. Patients saw PHR communication functions as a potential tool for relationship building. Patients and caregivers valued the journal as a tool for reflection and delivery of emotional support. Providers felt the PHR would facilitate patient-physician communication but worried that sharing journal access would make the doctor-patient relationship less professional and had reservations about the time burden of reviewing. Strategies suggested for efficient adoption into workflow included team delegation. Establishment of parameters for patient uses and provider responses was perceived as good standard practice. Conclusions: PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational. Personal health records should be linked to electronic health records for ease of use. Tailoring access, content, and implementation of the PHR is essential. Technology changes have the potential to change the nature of the patient-physician relationship. Patients and providers should establish shared expectations about the optimal use of the PHR and explore how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care.