Your browser doesn't support javascript.
loading
: 20 | 50 | 100
1 - 20 de 58
1.
Qual Life Res ; 33(7): 2011-2023, 2024 Jul.
Article En | MEDLINE | ID: mdl-38769210

PURPOSE: This study aimed to develop and psychometrically evaluate a patient-reported outcome measure (PROM), SAlivary, LAcrimal, NaSal (SALANS), to document patients' symptoms after radioactive iodine (RAI) treatment for differentiated thyroid cancer (DTC). METHODS: We generated and iteratively revised SALANS items based on expert input, focus group discussions and feedback from cognitive testing (n = 17). We administered an initial SALANS measure with 39 items to patients diagnosed with DTC in the past two years (n = 105). Exploratory factor analysis (EFA) examined the factor structure of the SALANS items. We assessed the consistency reliability and related the total and subscale scores of the final SALANS to existing PROMs to assess validity. RESULTS: The final SALANS consisted of 33 items and six subscales (sialadenitis, taste, xerostomia, dry eyes, epiphora, and nasal) with six factors extracted by EFA. The six subscales demonstrated good internal reliability (α range = 0.87-0.92). The SALANS total score showed good convergent validity with the Xerostomia Inventory (r = 0.86) and good discriminant validity with a measure of spirituality (r = - 0.05). The mean SALANS total score was significantly higher (d = 0.5, p < 0.04) among patients who had RAI compared to those who did not have RAI. CONCLUSION: Preliminary evidence suggests that SALANS is a novel and reliable PROM to assess the type and frequency all symptoms experienced after RAI treatment for DTC. Future work is needed to further validate and develop the scale.


Iodine Radioisotopes , Patient Reported Outcome Measures , Psychometrics , Thyroid Neoplasms , Humans , Female , Male , Middle Aged , Iodine Radioisotopes/therapeutic use , Iodine Radioisotopes/adverse effects , Reproducibility of Results , Adult , Thyroid Neoplasms/radiotherapy , Thyroid Neoplasms/psychology , Aged , Surveys and Questionnaires , Factor Analysis, Statistical , Quality of Life , Xerostomia/etiology , Xerostomia/psychology
2.
J Natl Cancer Inst ; 2024 Mar 05.
Article En | MEDLINE | ID: mdl-38445744

BACKGROUND: Optimal methods for deploying electronic patient-reported outcomes (ePROs) to manage symptoms in routine oncologic practice remain uncertain. The eSyM symptom management program asks chemotherapy and surgery patients to self-report 12 symptoms regularly. Feedback from nurses and patients led to changing the recall period from the past 7 days to the past 24 hours. METHODS: Using questionnaires submitted during the 16-weeks surrounding the recall period change, we assessed the likelihood of reporting a severe, or a moderate-severe, symptom across all 12 symptoms and separately for the 5 most prevalent symptoms. Interrupted time series analyses modeled the effects of the change using generalized linear mixed-effects models. Surgery and chemotherapy cohorts were analyzed separately. Study-wide effects were estimated using a meta-analysis method. RESULTS: In total, 1,692 patients from 6 institutions submitted 7,823 eSyM assessments during the 16-weeks surrounding the recall period change. Shortening the recall period was associated with lower odds of severe symptom reporting in the surgery cohort (OR 0.65; 95% CI 0.46 to 0.93; p = .02) and lower odds of moderate-severe symptom reporting in the chemotherapy cohort (OR 0.83, 95% CI 0.71 to 0.97; p = .02). Among the most prevalent symptoms, 24-hour recall was associated with lower rate of reporting post-operative constipation, but no differences in reporting rates for other symptoms. CONCLUSION: A shorter recall period was associated with a reduction in the proportion of patients reporting moderate-severe symptoms. The optimal recall period may vary depending on whether ePROs are collected for active symptom management, as a clinical trial endpoint, or another purpose. (Clinicaltrails.gov (NCT03850912).

3.
Telemed J E Health ; 2024 Feb 23.
Article En | MEDLINE | ID: mdl-38394136

Introduction: Use of telehealth increased during the COVID-19 pandemic and continues to be a popular health resource. This study analyzed the frequency and sentiment of telehealth discussions on Reddit. Methods: The data set included 13,071 publicly available Reddit submissions containing keywords related to telehealth over a 3-year period. We identified 173 unique subreddit communities, which were coded into mutually exclusive categories: (1) general telehealth, (2) individual care, (3) professional, (4) news, and (5) COVID-19. The Vader lexicon-based machine was used to assign sentiment scores. Results: Most subreddits were coded as individual care (n = 112), professional (n = 26), and news (n = 22). The frequency of submissions increased during the first 2 months of the pandemic and dropped in June 2020, but remained consistent through October 2022. Most Reddit submissions were positive in sentiment (56%). Conclusion: Findings show a mostly positive view of telehealth among Reddit users and an increase in telehealth-related discussions since the COVID-19 pandemic.

4.
Cancer Epidemiol Biomarkers Prev ; 33(4): 593-599, 2024 Apr 03.
Article En | MEDLINE | ID: mdl-38284816

BACKGROUND: A cancer diagnosis may have deleterious effects on health-related quality of life (HRQOL) as adults age. This study examined differences in HRQOL between cancer and matched noncancer Medicare beneficiaries over 65, within and across two time periods. METHODS: We used novel matching methods on data from the Surveillance, Epidemiology and End Results (SEER)-Medicare Health Outcomes Survey (MHOS) data resource. We matched SEER-MHOS respondents with cancer from a recent period (2015-2019) to respondents with cancer from an earlier period (2008-2012). We then matched these two cohorts, without replacement, to contemporary cohorts without cancer diagnoses. We estimated Veteran's RAND 12-Item Short Form Survey Physical Component Summary (PCS) and Mental Component Summary (MCS) scores for all cohorts. RESULTS: Our analysis found significantly higher mean MCS scores in the recent period for those with cancer relative to the recent noncancer control group. Breast and lung cancer presented positive and statistically significant trends. We found statistically insignificant differences in PCS scores between the two time periods. No cancer sites had different PCS scores over time compared with the comparison group. CONCLUSIONS: Mental health for those with cancer improved more between 2008 and 2019 than a matched noncancer comparison group. Physical health remained stable across time. These findings highlight the importance of including a matched noncancer group when evaluating HRQOL outcomes. IMPACT: SEER-MHOS respondents with cancer report stable PCS scores across 15 years of data and higher MCS scores relative to noncancer controls.


Cancer Survivors , Lung Neoplasms , Aged , Humans , United States/epidemiology , Quality of Life , Medicare , Surveys and Questionnaires , Outcome Assessment, Health Care
5.
J Natl Cancer Inst ; 116(3): 476-484, 2024 Mar 07.
Article En | MEDLINE | ID: mdl-37930884

BACKGROUND: Electronic health record-linked portals may improve health-care quality for patients with cancer. Barriers to portal access and use undermine interventions that rely on portals to reduce cancer care disparities. This study examined portal access and persistence of portal use and associations with patient and structural factors before the implementation of 3 portal-based interventions within the Improving the Management of symPtoms during And following Cancer Treatment (IMPACT) Consortium. METHODS: Portal use data were extracted from electronic health records for the 12 months preceding intervention implementation. Sociodemographic factors, mode of accessing portals (web vs mobile), and number of clinical encounters before intervention implementation were also extracted. Rurality was derived using rural-urban commuting area codes. Broadband access was estimated using the 2015-2019 American Community Survey. Multiple logistic regression models tested the associations of these factors with portal access (ever accessed or never accessed) and persistence of portal use (accessed the portal ≤20 weeks vs ≥21 weeks in the 35-week study period). RESULTS: Of 28 942 eligible patients, 10 061 (35%) never accessed the portal. Male sex, membership in a racial and ethnic minority group, rural dwelling, not working, and limited broadband access were associated with lower odds of portal access. Younger age and more clinical encounters were associated with higher odds of portal access. Of those with portal access, 25% were persistent users. Using multiple modalities for portal access, being middle-aged, and having more clinical encounters were associated with persistent portal use. CONCLUSION: Patient and structural factors affect portal access and use and may exacerbate disparities in electronic health record-based cancer symptom surveillance and management.


Neoplasms , Patient Portals , Middle Aged , Humans , Male , Electronic Health Records , Ethnicity , Minority Groups , Racial Groups , Neoplasms/epidemiology , Neoplasms/therapy
6.
JNCI Cancer Spectr ; 7(6)2023 Oct 31.
Article En | MEDLINE | ID: mdl-37930033

Cancer and its treatment produce deleterious symptoms across the phases of care. Poorly controlled symptoms negatively affect quality of life and result in increased health-care needs and hospitalization. The Improving the Management of symPtoms during And following Cancer Treatment (IMPACT) Consortium was created to develop 3 large-scale, systematic symptom management systems, deployed through electronic health record platforms, and to test them in pragmatic, randomized, hybrid effectiveness and implementation trials. Here, we describe the IMPACT Consortium's conceptual framework, its organizational components, and plans for evaluation. The study designs and lessons learned are highlighted in the context of disruptions related to the COVID-19 pandemic.


Neoplasms , Quality of Life , Humans , Pandemics , Hospitalization , Neoplasms/diagnosis , Neoplasms/therapy , Research Design
7.
Contemp Clin Trials ; 128: 107171, 2023 05.
Article En | MEDLINE | ID: mdl-36990275

BACKGROUND: People with cancer experience symptoms that adversely affect quality of life. Despite existing interventions and clinical guidelines, timely symptom management remains uneven in oncology care. We describe a study to implement and evaluate an electronic health record (EHR)-integrated symptom monitoring and management program in adult outpatient cancer care. METHODS: Our cancer patient-reported outcomes (cPRO) symptom monitoring and management program is a customized EHR-integrated installation. We will implement cPRO across all Northwestern Memorial HealthCare (NMHC) hematology/oncology clinics. We will conduct a cluster randomized modified stepped-wedge trial to evaluate patient and clinician engagement with cPRO. Further, we will embed a patient-level randomized clinical trial to evaluate the impact of an additional enhanced care (EC; cPRO plus web-based symptom self-management intervention) relative to usual care (UC; cPRO alone). The project uses a Type 2 hybrid effectiveness-implementation approach. The intervention will be implemented across seven regional clusters within the healthcare system comprising 32 clinic sites. A 6-month prospective pre-implementation enrollment period will be followed by a post-implementation enrollment period, during which newly enrolled, consenting patients will be randomly assigned (1:1) to EC or UC. We will follow patients for 12 months post-enrollment. Patients randomized to EC will receive evidence-based symptom-management content on cancer-related concerns and approaches to enhance quality of life, using a web-based tool ("MyNM Care Corner"). This design allows for within- and between-site evaluation of implementation plus a group-based comparison to demonstrate effectiveness on patient-level outcomes. DISCUSSION: The project has potential to guide implementation of future healthcare system-level cancer symptom management programs. http://ClinicalTrials.gov # NCT03988543.


Electronic Health Records , Neoplasms , Adult , Humans , Quality of Life , Prospective Studies , Delivery of Health Care , Neoplasms/therapy , Electronics , Randomized Controlled Trials as Topic
8.
PLoS One ; 17(12): e0279725, 2022.
Article En | MEDLINE | ID: mdl-36584146

INTRODUCTION: Patient-centered communication (PCC) is one important component of patient-centered care and seen as a goal for most clinical encounters. Previous research has shown that higher PCC is related to an increase in healthy behaviors and less morbidity, among other outcomes. Given its importance, the National Cancer Institute (NCI) commissioned a monograph in 2007 to synthesize the existing literature on PCC and determine measurement objectives and strategies for measuring this construct, with a particular focus on cancer survivors. Based on this effort, a seven-item PCC scale was included on the Health Information National Trends Survey (HINTS), a probability-based survey of the US adult population. This study used HINTS data collected in 2018 to evaluate the psychometric properties of the PCC scale for the general US adult population including measures of reliability and validity. RESULTS: Through an exploratory factor analysis, the seven-item PCC scale was shown to be unidimensional with good internal consistency (Cronbach's alpha = .92). A confirmatory factor analysis verified the factor structure. Other construct validity metrics included known groups and discriminant validity. Known group comparisons were conducted for several sociodemographic factors and health self-efficacy confirming a priori assumptions. Discriminant validity tests with measures of social support and anxiety/depression showed relatively weak associations. CONCLUSIONS: The psychometric properties of this scale demonstrate its scientific utility for both surveillance research and other smaller-scale studies. Given its association with many health outcomes, it can also be used to better understand the dynamics in a clinical encounter.


Communication , Health Care Surveys , Patient-Centered Care , Adult , Humans , Factor Analysis, Statistical , Psychometrics , Reproducibility of Results , United States
9.
Emerg Cancer Care ; 1(1): 4, 2022.
Article En | MEDLINE | ID: mdl-35844668

Purpose of review: Cancer-related emergency department (ED) visits often result in higher hospital admission rates than non-cancer visits. It has been estimated many of these costly hospital admissions can be prevented, yet urgent care clinics and EDs lack cancer-specific care resources to support the needs of this complex population. Implementing effective approaches across different care settings and populations to minimize ED and urgent care visits improves oncologic complication management, and coordinating follow-up care will be particularly important as the population of cancer patients and survivors continues to increase. The National Cancer Institute (NCI) and the Office of Emergency Care (OECR) convened a workshop in December 2021, "Cancer-related Emergency and Urgent Care: Prevention, Management, and Care Coordination" to highlight progress, knowledge gaps, and research opportunities. This report describes the current landscape of cancer-related urgent and emergency care and includes research recommendations from workshop participants to decrease the risk of oncologic complications, improve their management, and enhance coordination of care. Recent findings: Since 2014, NCI and OECR have collaborated to support research in cancer-related emergency care. Workshop participants recommended a number of promising research opportunities, as well as key considerations for designing and conducting research in this area. Opportunities included better characterizing unscheduled care services, identifying those at higher risk for such care, developing care delivery models to minimize unplanned events and enhance their care, recognizing cancer prevention and screening opportunities in the ED, improving management of specific cancer-related presentations, and conducting goals of care conversations. Summary: Significant progress has been made over the past 7 years with the creation of the Comprehensive Oncologic Emergency Research Network, broad involvement of the emergency medicine and oncology communities, establishing a proof-of-concept observational study, and NCI and OECR's efforts to support this area of research. However, critical gaps remain.

10.
J Med Internet Res ; 24(1): e34616, 2022 01 25.
Article En | MEDLINE | ID: mdl-34978531

BACKGROUND: There has been rapid integration of telehealth into care delivery during the COVID-19 pandemic. However, little is known about technology ownership, internet access and use for communication, and telehealth availability among cancer survivors, particularly those enrolled in Medicare. OBJECTIVE: This study aims to identify sociodemographic associations with technology ownership, internet access and use for communication, and telehealth availability in a population-based sample of Medicare-enrolled cancer survivors. METHODS: Data are from the Medicare Current Beneficiary Survey COVID-19 Summer 2020 Supplement administered between June 10 and July 15, 2020. Analyses were restricted to beneficiaries who reported a prior (nonskin) cancer diagnosis and a usual source of care (N=2044). Dichotomous outcomes included technology ownership, internet access, internet use for communication, and telehealth availability from providers. Sociodemographic correlates included sex, age, race/ethnicity, Medicare/Medicaid dual enrollment, rurality, census region, and self-reported comorbidities. RESULTS: Over half (957/2044, 53%) of cancer survivors reported using the internet for communication purposes, and 62% (1218/2044) reported that their usual provider had telehealth services available. Using the internet for communication purposes was reported less frequently for rural compared to urban survivors (adjusted probability of 28% vs 46%; P<.001) and for Hispanic and Black survivors compared to non-Hispanic White survivors (29%, 31%, and 44%, respectively; all P<.01). Rural survivors reported lower telehealth availability (53% vs 63%; P<.001); no significant differences in telehealth availability were identified by race/ethnicity. CONCLUSIONS: During the COVID-19 pandemic, study findings highlight a complex digital divide among Medicare beneficiaries with a history of cancer related to device ownership necessary for telehealth, internet access and use for communication, and reports of providers having telehealth available. Multilevel approaches are needed to increase equitable telehealth availability and use for cancer survivors. Suggested strategies include increasing broadband internet access to providers and patients in at-risk communities, supporting telehealth implementation among providers that serve populations with known health disparities, raising awareness of providers' available telehealth services among patients, and screening for technology use and provision of telehealth-related technical assistance among older and historically underserved cancer survivors.


COVID-19 , Cancer Survivors , Neoplasms , Telemedicine , Aged , Cross-Sectional Studies , Humans , Medicare , Neoplasms/epidemiology , Neoplasms/therapy , Pandemics , SARS-CoV-2 , Technology , United States/epidemiology
11.
J Cancer Surviv ; 16(1): 111-118, 2022 02.
Article En | MEDLINE | ID: mdl-33641030

PURPOSE: Continued tobacco smoking following a cancer diagnosis is associated with adverse outcomes. Our study aims to identify the demographic and clinical characteristics of survivors who quit smoking within a year of diagnosis. METHODS: We conducted a secondary analysis of the Measuring Your Health (MY-Health) study, a community-based survey cohort of 5506 cancer patients registered across four Surveillance, Epidemiology, and End Results (SEER) cancer registries. Using surveys completed 6-13 months after diagnosis, we identified 868 participants who reported smoking around the time of cancer diagnosis and compared their current smoking status. We employed logistic regression models to predict current smoking status, adjusting for clinical and demographic variables. RESULTS: The overall smoking cessation rate was 35% (n = 306). Survivors with non-small cell lung cancer were three times more likely to quit smoking compared to patients with non-smoking-related cancers (aOR = 3.23, 95% CI = 2.20-4.74). Participants with advanced stage cancer reported higher odds of quitting compared to those with localized cancer (aOR = 1.42, 95% CI = 1.02-1.96). Other characteristics that predicted quitting included being married, higher education level, and female sex (aOR = 2.01, 95% CI = 1.46-2.77; aOR = 1.74, 95% CI = 1.27-2.39; aOR = 1.54, 95% CI = 1.11-2.13, respectively). CONCLUSIONS: This is one of the first studies to examine smoking cessation trends in a community-based, US cancer cohort during the year after diagnosis. Survivors with lung cancer and advanced cancer were significantly more likely to quit smoking. IMPLICATIONS FOR CANCER SURVIVORS: Practitioners may use this knowledge to target interventions and address substantial disparities in cessation rates among survivors with early stage and non-lung cancers.


Carcinoma, Non-Small-Cell Lung , Lung Neoplasms , Smoking Cessation , Carcinoma, Non-Small-Cell Lung/diagnosis , Carcinoma, Non-Small-Cell Lung/epidemiology , Cohort Studies , Female , Humans , Lung Neoplasms/diagnosis , Lung Neoplasms/epidemiology , Smoking Cessation/methods , Survivors
12.
JMIR Mhealth Uhealth ; 9(12): e29190, 2021 12 13.
Article En | MEDLINE | ID: mdl-34898448

BACKGROUND: Sharing data from wearable health and activity trackers (wearables) with others may improve the health and behavioral outcomes of wearable users by generating social support and improving their ability to manage their health. Investigating individual factors that influence US adults' willingness to share wearable data with different types of individuals may provide insights about the population subgroups that are most or least likely to benefit from wearable interventions. Specifically, it is necessary to identify digital health behaviors potentially associated with willingness to share wearable data given that the use of and engagement with various technologies may broadly influence web-based health information-sharing behaviors. OBJECTIVE: This study aims to identify sociodemographic, health, and digital health behavior correlates of US adults' willingness to share wearable data with health care providers and family or friends. METHODS: Data for the analytic sample (N=1300) were obtained from the 2019 Health Information National Trends Survey of the National Cancer Institute. Digital health behavior measures included frequency of wearable device use, use of smartphones or tablets to help communicate with providers, use of social networking sites to share health information, and participation in a web-based health community. Multivariable logistic regression analysis of weighted data examined the associations between digital health behaviors and willingness to share wearable device data, controlling for sociodemographics and health-related characteristics. RESULTS: Most US adults reported willingness to share wearable data with providers (81.86%) and with family or friends (69.51%). Those who reported higher health self-efficacy (odds ratio [OR] 1.97, 95% CI 1.11-3.51), higher level of trust in providers as a source of health information (OR 1.98, 95% CI 1.12-3.49), and higher level of physical activity (OR 2.00, 95% CI 1.21-3.31) had greater odds of willingness to share data with providers. In addition, those with a higher frequency of wearable use (OR 2.15, 95% CI 1.35-3.43) and those who reported use of smartphones or tablets to help communicate with providers (OR 1.99, 95% CI 1.09-3.63) had greater odds of willingness to share data with providers. Only higher level of physical activity was associated with greater odds of willingness to share wearable data with family or friends (OR 1.70, 95% CI 1.02-2.84). Sociodemographic factors were not significantly associated with willingness to share wearable data. CONCLUSIONS: The findings of this study suggest that, among US adult wearable users, behavior-related factors, rather than sociodemographic characteristics, are key drivers of willingness to share health information obtained from wearables with others. Moreover, behavioral correlates of willingness to share wearable data are unique to the type of recipient (ie, providers vs family or friends). Future studies could use these findings to inform the development of interventions that aim to improve the use of patient-generated data from wearable devices in health care settings.


Fitness Trackers , Wearable Electronic Devices , Adult , Humans , Information Dissemination , Sociodemographic Factors , Surveys and Questionnaires
13.
PLoS One ; 16(4): e0250061, 2021.
Article En | MEDLINE | ID: mdl-33857240

OBJECTIVES: Systems epidemiology approaches may lead to a better understanding of the complex and dynamic multi-level constellation of contributors to cancer risk and outcomes and help target interventions. This grant portfolio analysis aimed to describe the National Institutes of Health (NIH) and the National Cancer Institute (NCI) investments in systems epidemiology and to identify gaps in the cancer systems epidemiology portfolio. METHODS: The analysis examined grants funded (2013-2018) through seven NIH systems science Funding Opportunity Announcements (FOAs) as well as cancer-specific systems epidemiology grants funded by NCI during that same time. Study characteristics were extracted from the grant abstracts and specific aims and coded. RESULTS: Of the 137 grants awarded under the NIH FOAs, 52 (38%) included systems epidemiology. Only five (4%) were focused on cancer systems epidemiology. The NCI-wide search (N = 453 grants) identified 35 grants (8%) that included cancer systems epidemiology in their specific aims. Most of these grants examined epidemiology and surveillance-based questions (60%); fewer addressed clinical care or clinical trials (37%). Fifty-four percent looked at multiple scales within the individual (e.g., cell, tissue, organ), 49% looked beyond the individual (e.g., individual, community, population), and few (9%) included both. Across all grants examined, the systems epidemiology grants primarily focused on discovery or prediction, rather than on impacts of intervention or policy. CONCLUSIONS: The most notable finding was that grants focused on cancer versus other diseases reflected a small percentage of the portfolio, highlighting the need to encourage more cancer systems epidemiology research. Opportunities include encouraging more multiscale research and continuing the support for broad examination of domains in these studies. Finally, the nascent discipline of systems epidemiology could benefit from the creation of standard terminology and definitions to guide future progress.


Biomedical Research/economics , Financing, Organized/economics , National Institutes of Health (U.S.)/economics , Neoplasms , Research Support as Topic/economics , Humans , United States
14.
JNCI Cancer Spectr ; 5(1)2021 02.
Article En | MEDLINE | ID: mdl-33615136

Background: With increasing prevalence of cancer survivors in the United States, health-related quality of life (HRQOL) has become a major priority. We describe HRQOL in a nationally representative sample of cancer survivors and examine associations with key sociodemographic, clinical, and lifestyle characteristics. Methods: Cancer survivors, defined as individuals ever diagnosed with cancer (N = 877), were identified from the 2016 Medical Expenditure Panel Survey-Experiences with Cancer Survivorship Supplement, a nationally representative survey. Physical and mental health domains of HRQOL were measured by the Global Physical Health (GPH) and Global Mental Health (GMH) subscales of the Patient-Reported Outcomes Measurement Information System Global-10. Multivariable linear regression was used to examine associations of sociodemographic, clinical, and lifestyle factors with GPH and GMH scores. All statistical tests were 2-sided. Results: Cancer survivors' mean GPH (49.28, SD = 8.79) and mean GMH (51.67, SD = 8.38) were similar to general population means (50, SD = 10). Higher family income was associated with better GPH and GMH scores, whereas a greater number of comorbidities and lower physical activity were statistically significantly associated with worse GPH and GMH. Survivors last treated 5 years ago and longer had better GPH than those treated during the past year, and current smokers had worse GMH than nonsmokers (all ß > 3 and all P < .001). Conclusions: Cancer survivors in the United States have generally good HRQOL, with similar physical and mental health scores to the general US population. However, comorbidities, poor health behaviors, and recent treatment may be risk factors for worse HRQOL. Multimorbidity management and healthy behavior promotion may play a key role in maximizing HRQOL for cancer survivors.


Cancer Survivors/psychology , Health Status , Mental Health , Quality of Life , Adolescent , Adult , Aged , Cancer Survivors/statistics & numerical data , Comorbidity , Exercise , Female , Humans , Life Style , Linear Models , Male , Middle Aged , Non-Smokers/psychology , Smokers/psychology , Socioeconomic Factors , Time Factors , United States , Young Adult
15.
Qual Life Res ; 30(4): 1119-1129, 2021 Apr.
Article En | MEDLINE | ID: mdl-33447956

PURPOSE: Older cancer survivors (≥ 65 years at diagnosis) are at high-risk for multimorbidity (2 + comorbid conditions). However, few studies have utilized a generalizable sample of older cancer survivors to understand how individual comorbid conditions, as opposed to total comorbidity burden, are associated with health-related quality of life (HRQOL). We examined associations between HRQOL outcomes (pain, fatigue, physical function), individual comorbidities (cardiovascular disease [CVD], lung disease, diabetes, arthritis) and total comorbidity (cancer-only, cancer + 1 condition, cancer + 2 or more conditions). METHODS: Utilizing a population-based sample of 2019 older cancer survivors, we tested associations between comorbid conditions and the HRQOL outcomes using generalized linear models. HRQOL domains were assessed using Patient-Reported Outcome Measurement Information System® (PROMIS®) measures. Comorbidity was assessed via self-report. RESULTS: Cancer survivors with lung disease reported significantly worse physical functioning (ß = - 4.96, p < 0.001), survivors with arthritis reported significantly higher pain (ß = 4.37, p < 0.001), and survivors with CVD reported significantly higher fatigue (ß = 3.45, p < 0.001) compared to survivors without each condition. Having cancer + 1 condition was not as strongly associated with all outcomes as when individual conditions were tested (e.g. pain: ß = 3.09, p < 0.001). Having 2+ comorbidities had a stronger association with all outcomes (e.g. physical function: ß = - 7.51, p < 0.001) than examining conditions individually. CONCLUSIONS: Knowing the specific comorbid condition profile of an older cancer survivor provides insight into specific HRQOL outcomes that may be impaired in cancer survivorship, but understanding total comorbidity burden, regardless of the specific conditions, sheds light on survivors at-risk for multiple impairments in HRQOL. This information, taken together, can inform risk-stratified survivorship care.


Cancer Survivors/psychology , Comorbidity/trends , Patient Reported Outcome Measures , Quality of Life/psychology , Aged , Female , Humans , Male , Neoplasms/mortality
16.
EJHaem ; 2(3): 488-492, 2021 Aug.
Article En | MEDLINE | ID: mdl-35844688

We evaluated changes in patient-reported outcomes and cognitive function from pre- to 3-6 months post-treatment among 42 newly diagnosed patients with multiple myeloma undergoing transplant with complete data using PROMIS-29. There were statistically significant improvements in physical (p < .001) and mental health (p < .001) but not cognition from pre-treatment to 3-6 month follow-up. Similar results were seen within age or comorbidity strata. Patients with myeloma undergoing transplant experienced generally improved short-term health outcomes with no significant declines in cognition.

17.
Psychooncology ; 30(1): 52-58, 2021 01.
Article En | MEDLINE | ID: mdl-32840948

OBJECTIVE: To assess the extent to which spiritual well-being moderates the relationship between anxiety and physical well-being in a diverse, community-based cohort of newly diagnosed cancer survivors. METHODS: Data originated from the Measuring Your Health (MY-Health) study cohort (n = 5506), comprising people assessed within 6-13 months of cancer diagnosis. Life meaning/peace was assessed using the 8-item subscale of the Spiritual Well-Being Scale (FACIT-Sp-12). Anxiety was measured with an 11-item PROMIS Anxiety short form, and physical well-being was assessed using the 7-item FACT-G subscale. Multiple linear regression models were used to assess relationships among variables. RESULTS: Life meaning and peace was negatively associated with anxiety, b = -0.56 (P < .001) and positively associated with physical well-being, b = 0.43 (P = <.001) after adjusting for race, education, income, and age. A significant interaction between life meaning/peace and anxiety emerged (P < .001) indicating that spiritual well-being moderates the relationship between anxiety and physical well-being. Specifically, for cancer survivors high in anxiety, physical well-being was dependent on levels of life meaning/peace, b = 0.19, P < .001. For those low in anxiety, physical well-being was not associated with levels of life meaning/peace, b = 0.01, P = .541. Differences in cancer clinical factors (cancer stage at diagnosis, cancer type) did not significantly impact results. CONCLUSIONS: Further research is needed to assess how spiritual well-being may buffer the negative effect of anxiety on physical well-being. A clinical focus on spiritual well-being topics such as peace and life meaning may help cancer survivors of all types as they transition into follow-up care.


Cancer Survivors/psychology , Neoplasms/psychology , Quality of Life/psychology , Spirituality , Adult , Aged , Anxiety , Female , Humans , Male , Middle Aged , Neoplasms/diagnosis
18.
J Cancer Surviv ; 14(6): 847-857, 2020 12.
Article En | MEDLINE | ID: mdl-32506220

PURPOSE: Despite having a generally favorable prognosis, differentiated thyroid cancer is known to have a significant, long-term impact on the quality of life of survivors. We wished to investigate short- and long-term effects among thyroid cancer survivors following radioactive iodine therapy. METHODS: We conducted eight focus groups (N = 47) to understand patients' experiences of short- and long-term effects after radioactive iodine treatment and the impact these treatment-related side effects had on patients' quality of life. We elicited responses regarding experiences with side effects following radioactive iodine treatment, particularly salivary, lacrimal, and nasal symptoms. We transcribed audiotapes and conducted qualitative analyses to identify codes and themes. RESULTS: We identified eight broad themes from the qualitative analyses. Themes reflecting physical symptoms included dry mouth, salivary gland dysfunction, altered taste, eye symptoms such as tearing or dryness, and epistaxis. Psychosocial themes included lack of knowledge and preparation for treatment, regret of treatment, and distress that thyroid cancer is labeled as a "good cancer." CONCLUSIONS: Thyroid cancer survivors reported a wide range of radioactive iodine treatment-related effects and psychosocial concerns that appear to reduce quality of life. The psychosocial concerns reported by participants underscore the significant unmet information and support needs prior to and following RAI treatment among individuals diagnosed with thyroid cancer. IMPLICATIONS FOR CANCER SURVIVORS: Future research is needed to help both patients and physicians understand the effect of radioactive iodine on quality of life, and to better assess the benefits versus the risks of radioactive iodine therapy.


Cancer Survivors/statistics & numerical data , Craniofacial Abnormalities/etiology , Iodine Radioisotopes/adverse effects , Quality of Life , Thyroid Neoplasms/radiotherapy , Xerostomia/etiology , Adult , Aged , Aged, 80 and over , Craniofacial Abnormalities/pathology , Female , Humans , Male , Middle Aged , Thyroid Neoplasms/pathology , Xerostomia/pathology
19.
J Med Internet Res ; 22(5): e16299, 2020 05 14.
Article En | MEDLINE | ID: mdl-32406865

BACKGROUND: Multiple types of mobile health (mHealth) technologies are available, such as smartphone health apps, fitness trackers, and digital medical devices. However, despite their availability, some individuals do not own, do not realize they own, or own but do not use these technologies. Others may use mHealth devices, but their use varies in tracking health, behaviors, and goals. Examining patterns of mHealth use at the population level can advance our understanding of technology use for health and behavioral tracking. Moreover, investigating sociodemographic and health-related correlates of these patterns can provide direction to researchers about how to target mHealth interventions for diverse audiences. OBJECTIVE: The aim of this study was to identify patterns of mHealth use for health and behavioral tracking in the US adult population and to characterize the population according to those patterns. METHODS: We combined data from the 2017 and 2018 National Cancer Institute Health Information National Trends Survey (N=6789) to characterize respondents according to 5 mutually exclusive reported patterns of mHealth use for health and behavioral tracking: (1) mHealth nonowners and nonusers report not owning or using devices to track health, behaviors, or goals; (2) supertrackers track health or behaviors and goals using a smartphone or tablet plus other devices (eg, Fitbit); (3) app trackers use only a smartphone or tablet; (4) device trackers use only nonsmartphone or nontablet devices and do not track goals; and (5) nontrackers report having smartphone or tablet health apps but do not track health, behaviors, or goals. RESULTS: Being in the mHealth nonowners and nonusers category (vs all mHealth owners and users) is associated with males, older age, lower income, and not being a health information seeker. Among mHealth owners and users, characteristics of device trackers and supertrackers were most distinctive. Compared with supertrackers, device trackers have higher odds of being male (odds ratio [OR] 2.22, 95% CI 1.55-3.19), older age (vs 18-34 years; 50-64 years: OR 2.83, 95% CI 1.52-5.30; 65+ years: OR 6.28, 95% CI 3.35-11.79), have an annual household income of US $20,000 to US $49,999 (vs US $75,000+: OR 2.31, 95% CI 1.36-3.91), and have a chronic condition (OR 1.69, 95% CI 1.14-2.49). Device trackers also have higher odds of not being health information seekers than supertrackers (OR 2.98, 95% CI 1.66-5.33). CONCLUSIONS: Findings revealed distinctive sociodemographic and health-related characteristics of the population by pattern of mHealth use, with notable contrasts between those who do and do not use devices to track goals. Several characteristics of individuals who track health or behaviors but not goals (device trackers) are similar to those of mHealth nonowners and nonusers. Our results suggest patterns of mHealth use may inform how to target mHealth interventions to enhance reach and facilitate healthy behaviors.


Health Behavior/physiology , Neoplasms/epidemiology , Telemedicine/statistics & numerical data , Adolescent , Adult , Aged , Female , Humans , Male , Middle Aged , Mobile Applications/statistics & numerical data , National Cancer Institute (U.S.) , Surveys and Questionnaires , United States , Young Adult
20.
J Patient Rep Outcomes ; 4(1): 21, 2020 Mar 26.
Article En | MEDLINE | ID: mdl-32215788

BACKGROUND: ASCQ-Me®, Neuro-QoL™, NIH Toolbox®, and PROMIS®, which are health-related quality of life measures collectively known as HealthMeasures, have experienced rapid uptake in the scientific community with over 1700 peer-reviewed publications through 2018. Because of their proliferation across multiple research disciplines, there has been significant heterogeneity in the description and reporting of these measures. Here, we provide a publication checklist to promote standardization and comparability across different reports. This checklist can be used across all HealthMeasures systems. Checklist Development: Authors drafted a draft checklist, circulated among the HealthMeasures Steering Committee and PROMIS Health Organization until the members reached consensus. Checklist: The final checklist has 21 entries in 4 categories: measure details, administration, scoring, and reporting. Most entries (11) specify necessary measure-specific details including version number and administration language(s). Administration (4 entries) reminds authors to include details such as use of proxy respondents and the assessment platform. Scoring (3 entries) is necessary to ensure replication and cross-study comparisons. Reporting (3 entries) reminds authors to always report scores on the T-score metric. CONCLUSION: Consistent documentation is necessary to ensure transparent and reproducible methods and support the accumulation of evidence across studies. This checklist promotes standardization and completeness in documentation for ASCQ-Me, Neuro-QoL, PROMIS, and NIH Toolbox measures.

...