The Kaiser Permanente Research Bank Cancer Cohort: a collaborative resource to improve cancer care and survivorship

Feigelson, Heather Spencer; Clarke, Christina L; Eeden, Stephen K. Van Den; Weinmann, Sheila; Burnett‐Hartman, Andrea N.; Rowell, Sarah; Scott, Shauna Goldberg; White, Larissa; Ter‐Minassian, Monica; Honda, Stacey; Young, Deborah Rohm; Kamineni, Aruna; Chinn, Terrence; Lituev, Alexander; Bauck, Alan; McGlynn, Elizabeth A.

doi:10.1186/s12885-022-09252-6

Cited by 6 publications

(2 citation statements)

References 23 publications

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“…The KPRB includes members from all 8 KP regions nationwide, including Colorado, Georgia, Hawaii, mid-Atlantic States (District of Columbia, Maryland, Virginia), Northern California, Southern California, Northwest Oregon, and Washington state. In addition to general recruitment of all adult KP members, the KPRB conducts enhanced recruitment for recently diagnosed cancer patients and cancer survivors [ 28 ]. All participants provided written informed consent.…”

Section: Methodsmentioning

confidence: 99%

Social risk factors among individuals with a history of cancer during the COVID-19 pandemic

et al. 2022

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Purpose The coronavirus disease (COVID-19) pandemic and its economic consequences may disproportionately impact cancer survivors and their overall health-related quality of life. The objective of this study was to examine whether cancer survivors experienced higher levels of financial strain or food insecurity compared to those without a history of cancer. Methods Kaiser Permanente Research Bank (KPRB) study participants were invited to complete a series of electronic surveys starting April 2020 to assess the impact of the COVID-19 pandemic. Participants who completed the initial survey and one follow-up survey were included. The odds of financial strain and food insecurity in those with and without a history of cancer were estimated using multinomial logistic regression. Results Cancer survivors ( n = 16,231) had lower odds of reporting “somewhat hard” (AOR = 0.77) and “very hard” (AOR = 0.67) financial strain, and food insecurity “sometimes” (AOR = 0.70) and “often” (AOR = 0.55) compared to those with no history of cancer ( n = 88,409). Non-Hispanic (NH) Black and Hispanic cancer survivors had higher odds compared to NH Whites of reporting financial strain and food insecurity. Smokers and those with multiple comorbidities had higher odds of reporting financial strain and food insecurity among cancer survivors. Conclusions While cancer survivors overall did not report greater financial strain or food insecurity than individuals without a history of cancer, subsets of cancer survivors are experiencing greater social risks during the pandemic and should be prioritized for screening for social risk factors. Implications for Cancer Survivors Incorporating screening for social risk factors into care coordination workflows for subsets of cancer survivors should be a priority. Supplementary Information The online version contains supplementary material available at 10.1007/s11764-022-01235-7.

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Section: Methodsmentioning

confidence: 99%

Social risk factors among individuals with a history of cancer during the COVID-19 pandemic

et al. 2022

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“…Only the largest health systems can effectively utilize these systems in building research cohorts (e.g. Kaiser Permanente [ 17 ], Geisinger Health [ 18 ], and the Veterans Administration [ 19 ]). Again, these systems are limited by the biases of the individuals covered in these plans as well as the treatment schedules available in these systems.…”

Section: History Of Electronic Medical Record (Emr) Data Repositoriesmentioning

confidence: 99%

Novel recruitment approaches and operational results for a statewide population Cohort for cancer research: The Healthy Oregon Project

Zhang,

Shafer,

Johnson-Camacho

et al. 2024

J. Clin. Trans. Sci.

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Background: Cancer health research relies on large-scale cohorts to derive generalizable results for different populations. While traditional epidemiological cohorts often use costly random sampling or self-motivated, preselected groups, a shift toward health system-based cohorts has emerged. However, such cohorts depend on participants remaining within a single system. Recent consumer engagement models using smartphone-based communication, driving projects, and social media have begun to upend these paradigms. Methods: We initiated the Healthy Oregon Project (HOP) to support basic and clinical cancer research. HOP study employs a novel, cost-effective remote recruitment approach to effectively establish a large-scale cohort for population-based studies. The recruitment leverages the unique email account, the HOP website, and social media platforms to direct smartphone users to the study app, which facilitates saliva sample collection and survey administration. Monthly newsletters further facilitate engagement and outreach to broader communities. Results: By the end of 2022, the HOP has enrolled approximately 35,000 participants aged 18-100 years (median = 44.2 years), comprising more than 1% of the Oregon adult population. Among those who have app access, ~87% provided consent to genetic screening. The HOP monthly email newsletters have an average open rate of 38%. Efforts continue to be made to improve survey response rates. Conclusion: This study underscores the efficacy of remote recruitment approaches in establishing large-scale cohorts for population-based cancer studies. The implementation of the study facilitates the collection of extensive survey and biological data into a repository that can be broadly shared and supports collaborative clinical and translational research.

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Depression, anxiety, & loneliness among cancer survivors during the COVID-19 pandemic

White

Goldberg

Feigelson

et al. 2023

Journal of Psychosocial Oncology

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Purpose: Although studies have evaluated the mental health impacts in those recently diagnosed with cancer during the pandemic, few studies focused on cancer survivors who are past their primary cancer treatment. The objective of this study was to assess the impact of the COVID-19 pandemic on depression, anxiety, and loneliness between those with and without a history of cancer.Methods: Kaiser Permanente Research Bank participants were invited to complete a series of surveys from May to December 2020. The difference in score of depression, anxiety, and loneliness were estimated using linear mixed regression. All models adjusted for age group, sex, race/ethnicity, Kaiser Permanente region, smoking status, and Charlson comorbidity score.Results: Among cancer survivors, 21% and 19% met the thresholds for increased risk of depression and anxiety. Among those without a history of cancer, 24% met the thresholds for increased risk of depression and anxiety. Both groups reported decreases in mean depression, anxiety, and loneliness scores between May and July 2020, however, scores increased from August to December 2020. Cancer survivors had decreased depression, anxiety, and loneliness scores compared to those without a history of cancer.Among cancer survivors, younger age groups and females reported increased depression, anxiety, and loneliness scores, while non-Hispanic Black and Asian participants reported decreased depression, anxiety, and loneliness scores. Conclusion:The results of this study highlight the continued necessity of addressing mental health needs and social support in cancer survivors, especially those who are younger and female, during and after a public health emergency. PurposeBetween 2020-2021, the COVID-19 pandemic severely interrupted medical care for millions of individuals, most signi cantly affecting care of those with chronic conditions [1-2]. These disruptions, coupled with social isolation, fear of COVID-19 infection, and decreased access to mental health services, resulted in increased symptoms of depression, anxiety, and loneliness worldwide [3][4][5]. Among the population with chronic conditions, cancer patients may be disproportionately impacted by the mental health consequences of the COVID-19 pandemic.Recently published longitudinal and cross-sectional studies have reported that cancer patients may be at greater risk for COVID-19 morbidity and the various social and emotional impacts associated with the pandemic [6][7]. Furthermore, cancer patients reported increased emotional distress during lockdown, especially recently diagnosed individuals or those who started treatment during the initial months of the pandemic [8][9]. Although several studies have evaluated the mental health impacts in those recently diagnosed with cancer during the pandemic, few studies have focused on cancer survivors who are past their primary cancer treatment.

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The Kaiser Permanente Research Bank Cancer Cohort: a collaborative resource to improve cancer care and survivorship

Cited by 6 publications

References 23 publications

Social risk factors among individuals with a history of cancer during the COVID-19 pandemic

Social risk factors among individuals with a history of cancer during the COVID-19 pandemic

Novel recruitment approaches and operational results for a statewide population Cohort for cancer research: The Healthy Oregon Project

Depression, anxiety, & loneliness among cancer survivors during the COVID-19 pandemic

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