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1.
Cancer ; 130(22): 3855-3862, 2024 Nov 15.
Article in English | MEDLINE | ID: mdl-39072703

ABSTRACT

INTRODUCTION: Family planning among female physicians is harmed by high risks of infertility, workload burden, poor family leave policies, and gender discrimination. Many women report feeling unsupported in the workplace, despite national policies to protect against unfair treatment. METHODS: This secondary analysis applied a modified version of the rigorous and accelerated data reduction technique to conduct a thematic analysis of comments to an open-ended prompt. Comments were coded by multiple trained researchers then grouped and merged into illustrative themes via qualitative techniques. RESULTS: Of 1004 responses to the quantitative survey, 162 physicians completed the open-ended prompt. Initial codes (n = 16) were combined into eight groups including, from which three overarching themes were identified. Institutional barriers were highlighted with comments discussing the increased need for parental leave, part-time options and the concern for academic or professional punishment for being pregnant and/or having children. Departmental barriers were explored with comments grouped around codes of discrimination/negative culture and challenges with breastfeeding/pumping and childcare. Personal barriers were discussed in themes highlighting the difficulties that female physicians faced around the timing of family planning, challenges with reproductive health and assistance, and alternative circumstances and/or decisions against family planning. CONCLUSION: Barriers to family planning in oncology exist across career domains from dysfunctional maternity leave to poor education on infertility risk. Solutions include improving institutional support, expanding parental leave, and general cultural change to improve awareness and promotion of family and career balance.


Subject(s)
Family Planning Services , Physicians, Women , Humans , Female , Physicians, Women/psychology , Adult , Middle Aged , Medical Oncology , Fertility , Surveys and Questionnaires , Sexism/psychology , Attitude of Health Personnel
2.
Ann Surg Oncol ; 31(12): 8040-8047, 2024 Nov.
Article in English | MEDLINE | ID: mdl-39078600

ABSTRACT

INTRODUCTION: Financial toxicity negatively affects clinical outcomes in breast cancer. Underrepresented demographics may be at higher risk for financial toxicity. We characterized disparities on the basis of age and other factors. PATIENTS AND METHODS: Surveys completed by women with stage 0-IV breast cancer treated at Memorial Sloan Kettering Cancer Center between 06/2022 and 05/2023 were analyzed. The comprehensive score for financial toxicity (COST) scale was used to assess financial toxicity. Descriptive statistics were calculated for differences in financial toxicity/related factors, and outcomes by age and race. Associations between variables of interest and COST scores were analyzed using linear regression. RESULTS: Of 8512 respondents (75% white, 9.3% Asian, 8.4% Black), most (68%) had clinical stage 0/I disease. Stratified by age, young Black women had higher financial toxicity than young white or Asian women (p < 0.001). On multivariable analysis, women age < 45 years experienced higher financial toxicity than older women (coefficient - 2.0, 95% CI - 2.8 to - 1.1, p < 0.001). Compared with white women, financial toxicity was greater among Black (coefficient - 6.8, 95% CI - 7.8 to - 5.8) and Asian women (coefficient - 3.5, 95% CI - 4.4 to - 2.5). Cost-related medication non-adherence was more frequent among Black and Asian women (p < 0.001). Asian women more often paid for treatment with savings than white and Black women (p < 0.001). Young women reported using savings for treatment-related costs more than older (45% vs. 32%); p < 0.001). CONCLUSIONS: Racial minorities and young patients are disproportionately affected by financial toxicity. Further studies are planned to determine how financial toxicity evolves over time and whether referral to financial services effectively reduces toxicity.


Subject(s)
Breast Neoplasms , Adult , Aged , Female , Humans , Middle Aged , Age Factors , Breast Neoplasms/economics , Breast Neoplasms/pathology , Cost of Illness , Financial Stress , Follow-Up Studies , Prognosis , Asian , Black or African American , White
3.
Support Care Cancer ; 31(7): 434, 2023 Jul 03.
Article in English | MEDLINE | ID: mdl-37395811

ABSTRACT

PURPOSE: This study aims to evaluate the associations between patient-provider cost discussions with patient-reported out-of-pocket (OOP) spending and long-term financial toxicity (FT) among adolescent and young adult (AYA; 15-39 years old) cancer survivors. METHODS: Using a cross-sectional survey, we assessed the themes and quality of patient discussions with providers about financial needs and general survivorship preparation, quantified patients' levels of FT, and evaluated patient-reported OOP spending. We determined the association between cancer treatment cost discussion and FT using multivariable analysis. In a subset of survivors (n = 18), we conducted qualitative interviews and used thematic analysis to characterize responses. RESULTS: Two hundred forty-seven AYA survivors completed the survey at a mean of 7 years post treatment and with a median COST score of 13. 70% of AYA survivors did not recall having any cost discussion about their cancer treatment with a provider. Having any cost discussion with a provider was associated with decreased FT (ß = 3.00; p = 0.02) but not associated with reduced OOP spending (χ2 = 3.77; p = 0.44). In a second adjusted model, with OOP spending included as a covariate, OOP spending was a significant predictor of FT (ß = - 1.40; p = 0.002). Key qualitative themes included survivors' frustration about the lack of communication related to financial issues throughout treatment and in survivorship, feeling unprepared, and reluctance to seek help. CONCLUSION: AYA patients are not fully informed about the costs of cancer care and FT; the dearth of cost discussions between patients and providers may represent a missed opportunity to reduce costs.


Subject(s)
Cancer Survivors , Cost Sharing , Cost of Illness , Financial Stress , Financial Stress/prevention & control , Financial Stress/psychology , Humans , Adolescent , Young Adult , Adult , Cancer Survivors/psychology , Time , Cross-Sectional Studies , Male , Female , Surveys and Questionnaires
4.
Support Care Cancer ; 30(3): 2713-2721, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34822002

ABSTRACT

INTRODUCTION: Financial toxicity is common and pervasive among cancer patients. Research suggests that gynecologic cancer patients experiencing financial toxicity are at increased risk for engaging in harmful cost-coping strategies, including delaying/skipping treatment because of costs, or forsaking basic needs to pay medical bills. However, little is known about patients' preferences for interventions to address financial toxicity. METHODS: Cross-sectional surveys to assess financial toxicity [Comprehensive Score for Financial Toxicity (COST)], cost-coping strategies, and preferences for intervention were conducted in a gynecologic cancer clinic waiting room. Associations with cost-coping were determined using multivariate modeling. Unadjusted odds ratios (ORs) explored associations between financial toxicity and intervention preferences. RESULTS: Among 89 respondents, median COST score was 31.9 (IQR: 21-38); 35% (N = 30) scored < 26, indicating they were experiencing financial toxicity. Financial toxicity was significantly associated with cost-coping (adjusted OR = 3.32 95% CI: 1.08, 14.34). Intervention preferences included access to transportation vouchers (38%), understanding treatment costs up-front (35%), minimizing wait times (33%), access to free food at appointments (25%), and assistance with minimizing/eliminating insurance deductibles (23%). In unadjusted analyses, respondents experiencing financial toxicity were more likely to select transportation assistance (OR = 2.67, 95% CI: 1.04, 6.90), assistance with co-pays (OR = 9.17, 95% CI: 2.60, 32.26), and assistance with deductibles (OR = 12.20, 95% CI: 3.47, 43.48), than respondents not experiencing financial toxicity. CONCLUSIONS: Our findings confirm the presence of financial toxicity in gynecologic cancer patients, describe how patients attempt to cope with financial hardship, and provide insight into patients' needs for targeted interventions to mitigate the harm of financial toxicity.


Subject(s)
Financial Stress , Genital Neoplasms, Female , Cost of Illness , Cross-Sectional Studies , Female , Genital Neoplasms, Female/therapy , Health Expenditures , Humans , Patient Reported Outcome Measures
5.
Cancer ; 127(23): 4481-4491, 2021 12 01.
Article in English | MEDLINE | ID: mdl-34351638

ABSTRACT

BACKGROUND: Young adult (YA) cancer survivors are at risk for financial toxicity during and after cancer treatment. Financial toxicity has been associated with medical-related cost-coping behaviors such as skipping or delaying treatment. The coronavirus disease 2019 (COVID-19) pandemic has resulted in dire economic consequences that may worsen financial hardship among young survivors. METHODS: This was a cross-sectional survey; data collection occurred online. A convenience sample was recruited through YA cancer advocacy groups and social media. Negative economic events associated with the COVID-19 pandemic (eg, income loss, increased debt, and decreased job security) and medical-related cost-coping were documented. A validated measure assessed cancer-related financial toxicity. RESULTS: Participants (N = 212) had a mean age of 35.3 years at survey completion and a mean age of 27.4 years at diagnosis. Financial toxicity (mean, 14.0; SD, 9.33) was high. Two-thirds of the sample experienced at least 1 negative economic event during COVID-19, and 71% engaged in at least 1 medical cost-coping behavior. Cost-coping and pandemic-related negative economic events were significantly correlated with cancer-related financial toxicity. In multivariable analyses, pandemic-related negative economic events and financial toxicity were associated with cost-coping. CONCLUSIONS: Acute negative economic events associated with the COVID-19 pandemic may exacerbate cancer-related financial toxicity and overall financial hardship among YAs and lead to cost-coping behaviors that can compromise survivorship care and health outcomes. Multilevel, systematic interventions are needed to address the financial needs of YA survivors after the global pandemic.


Subject(s)
Adaptation, Psychological , COVID-19 , Cancer Survivors , Health Expenditures , Neoplasms , Adult , COVID-19/psychology , Cancer Survivors/psychology , Cross-Sectional Studies , Humans , Neoplasms/economics , Neoplasms/psychology , Pandemics
6.
J Psychosoc Oncol ; 39(2): 285-293, 2021.
Article in English | MEDLINE | ID: mdl-33103948

ABSTRACT

Purpose To measure financial toxicity and explore its association with quality of life (QOL) in an emerging population of survivors: advanced melanoma patients treated with immunotherapy. Design Cross-sectional survey and medical record review. Sample 106 survivors (39% response). Median time since start of immunotherapy was 36.4 months (range: 14.2-133.9). Methods The Comprehensive Score for Financial Toxicity measured financial toxicity, and the EORTC-QLQ30 assessed QOL and functioning across five domains. Data were collected online, by phone, or in clinic. Findings: Younger patients (<65 years) reported higher financial toxicity (p < .001) than older patients. Controlling for age, financial toxicity was correlated with QOL (p < .001), financial difficulties (p < .001), and EORTC-QLQ30 functioning subscales. Conclusions Given the demonstrated association between financial toxicity and QOL, our study highlights the importance of addressing financial toxicity, particularly among patients receiving high-cost treatments. Implications for Psychosocial Providers: Providers should educate patients and their caregivers about cost-management techniques, link them with available resources, and provide psychosocial counseling to alleviate related distress.


Subject(s)
Financial Stress/psychology , Immunotherapy/economics , Melanoma/therapy , Aged , Cross-Sectional Studies , Female , Humans , Male , Melanoma/pathology , Middle Aged , Neoplasm Staging , Quality of Life
8.
Palliat Support Care ; 17(6): 677-685, 2019 12.
Article in English | MEDLINE | ID: mdl-30880658

ABSTRACT

OBJECTIVE: Percutaneous tunneled drainage catheter (PTDC) placement is a palliative alternative to serial paracenteses in patients with end-stage cancer and refractory ascites. The impact of PTDC on quality of life (QoL) and long-term outcomes has not been prospectively described. The objective was to evaluate changes in QoL after PTDC. METHOD: Eligible adult patients with end-stage cancer undergoing PTDC placement for refractory ascites completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and McGill Quality of Life instruments before PTDC placement and at 2 to 7 days and 2 to 4 weeks after PTDC. Catheter function, complications, and laboratory values were assessed. Analysis of QoL data was evaluated with a stratified Wilcoxon signed-rank test. RESULT: Fifty patients enrolled. Survey completion ranged from 65% to 100% (median 88%) across timepoints. All patients had a Tenckhoff catheter, with 98% technical success. Median survival after PTDC was 38 days (95% confidence interval = 32, 57 days). European Organization for Research and Treatment of Cancer scores showed improvement in global QoL (p = 0.03) at 1 week postprocedure (PP). Significant symptom improvement was reported for fatigue, nausea/vomiting, pain, dyspnea, insomnia, and appetite at 1 week PP and was sustained at 3 weeks PP for dyspnea (p < 0.01), insomnia (p < 0.01), and appetite loss (p = 0.03). McGill Quality of Life demonstrated overall QoL improvement at 1 (p = 0.03) and 3 weeks (p = 0.04) PP. Decline in sodium and albumin values pre- and post-PTDC slowed significantly (albumin slope -0.43 to -0.26, p = 0.055; sodium slope -2.50 to 1.31, p = 0.04). Creatinine values increased at an accelerated pace post-PTDC (0.040 to 0.21, p < 0.01). Thirty-eight catheter-related complications occurred in 24 of 45 patients (53%). SIGNIFICANCE OF RESULTS: QoL and symptoms improved after PTDC placement for refractory ascites in patients with end-stage malignancy. Decline in sodium and albumin values slowed postplacement. This study supports the use of a PTDC for palliation of refractory ascites in cancer patients.


Subject(s)
Ascites/complications , Neoplasms/therapy , Palliative Care/standards , Paracentesis/standards , Adult , Aged , Ascites/psychology , Female , Humans , Kaplan-Meier Estimate , Longitudinal Studies , Male , Middle Aged , Neoplasms/complications , Palliative Care/methods , Palliative Care/psychology , Paracentesis/methods , Prospective Studies , Quality of Life/psychology , Surveys and Questionnaires
9.
Psychooncology ; 27(12): 2829-2839, 2018 12.
Article in English | MEDLINE | ID: mdl-30238545

ABSTRACT

OBJECTIVE: Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial concerns of survivors pursuing family building through assisted reproductive technology (ART) and adoption. METHODS: Retrospective study of data collected from grant applications for financial assistance with family building. Grounded theory methodology using an inductive data-driven approach guided qualitative data analysis. RESULTS: Participants (N = 46) averaged 32 years old (SD = 3.4) were primarily female (81%) and married/partnered (83%). Four main themes were identified representing the (1) emotional experiences and (2) financial barriers to family building after cancer, (3) perceived impact on partners, and (4) disrupted life trajectory. Negative emotions were pervasive but were balanced with hope and optimism that parenthood would be achieved. Still, the combination of high ART/adoption costs, the financial impact of cancer, and limited sources for support caused extreme financial stress. Further, in the face of these high costs, many survivors reported worry and guilt about burdening partners, particularly as couples failed to meet personal and societal expectations for parenthood timelines. CONCLUSION: After cancer, YAs face numerous psychosocial and financial difficulties in their pursuits of family building when ART/adoption is needed to achieve parenthood. Survivors interested in future children may benefit from follow-up fertility counseling post-treatment including discussion of ART options, surrogacy, and adoption, as appropriate, and potential barriers. Planning for the financial cost and burden in particular may help to avoid or mitigate financial stress later on.


Subject(s)
Cancer Survivors/psychology , Emotions , Fertility , Infertility/economics , Neoplasms/psychology , Reproductive Techniques, Assisted/economics , Stress, Psychological , Adolescent , Adult , Child , Counseling , Female , Humans , Infertility/psychology , Infertility/therapy , Male , Neoplasms/complications , Neoplasms/therapy , Perception , Reproductive Techniques, Assisted/psychology , Retrospective Studies , Stress, Psychological/economics , Stress, Psychological/therapy , Time Factors , Young Adult
10.
Support Care Cancer ; 26(7): 2209-2215, 2018 Jul.
Article in English | MEDLINE | ID: mdl-29387996

ABSTRACT

BACKGROUND: Cancer treatment may lead to premature menopause and infertility. Young adult female cancer survivors (YAFCS) are often concerned about their fertility and future family-building options, but research is limited on how concerns may affect more general quality of life (QOL) domains. This study examined how fertility factors relate to QOL among YAFCS who received gonadotoxic therapy. METHOD: A national sample of YAFCS completed an online, anonymous survey. The survey included investigator-designed questions about perceived fertility information needs (five items; Cronbach's α = .83) and general QOL (four items; α = .89), the Reproductive Concerns after Cancer Scale (RCACS) and Decisional Conflict Scale (DCS). Analyses included Pearson's correlation, t tests, and stepwise regression. RESULTS: Participants (N = 314) were an average of 30 years old (SD = 4.1) and 5 years (SD = 5.4) post-treatment; 31% reported being infertile and 19% had undergone fertility preservation (FP). Overall, QOL was relatively high (M = 7.3, SD = 1.9, range 0-10) and did not vary by fertility status (t[272] = .743, p = .46), prior FP (t[273] = .53, p = .55) or sociodemographic/clinical factors (p's > .05) except socioeconomic indicators (p's < .05).In separate models, greater unmet fertility information needs (ß = - .19, p = .004) and, among fertile women, greater reproductive concerns (ß = - .26, p = .001) related to lower QOL. Among fertile women without prior FP, greater decisional distress about future FP related to lower QOL (ß = - .19, p = .03). CONCLUSIONS: These preliminary findings suggest that unaddressed fertility information needs, concerns, and decision distress may affect general QOL among post-treatment YAFCS who hope to have children in the future. Future work should identify ways to optimally incorporate fertility counseling and support resources into survivorship care programs, including referrals to reproductive specialists as appropriate.


Subject(s)
Cancer Survivors/psychology , Fertility Preservation/psychology , Neoplasms/psychology , Quality of Life/psychology , Adult , Decision Making , Female , Fertility , Humans , Neoplasms/mortality , Surveys and Questionnaires
11.
Cancer ; 122(13): 2101-9, 2016 07 01.
Article in English | MEDLINE | ID: mdl-27213483

ABSTRACT

BACKGROUND: Many young adult female cancer survivors (YAFCS) are at risk of experiencing premature menopause. The current study characterized the posttreatment fertility information needs, reproductive concerns, and decisional conflict regarding future options for posttreatment fertility preservation (FP) among YAFCS. METHODS: Participants completed a Web-based, anonymous survey between February and March 2015. The survey included investigator-designed questions of perceived information needs, the Reproductive Concerns After Cancer Scale, and the Decisional Conflict Scale. Analyses included Pearson correlation coefficients, independent-sample Student t tests, and multiple regression. RESULTS: There was a total of 346 participants with an average age of 29.9 years (SD = 4.1 years) who were 4.9 years from treatment (SD = 5.4 years [range, 0-27 years]). The main analyses focused on a subgroup of YAFCS with uncertain fertility status who had not previously undergone/attempted FP and either wanted future children or were unsure (179 women). Across fertility information topics, 43% to 62% of participants reported unmet information needs. The greatest reproductive concerns were related to fertility potential and the health of future offspring. The regression model controlled for a priori covariates including current age, age at treatment completion, income, relationship status, nulliparity, and prior fertility evaluation. Greater unmet information needs were found to be related to greater decisional conflict (ß = .43; p<.001); greater reproductive concerns were associated at the trend level (ß = .14, p = .08; F[8,118] = 6.42, p<.001). CONCLUSIONS: YAFCS with limited awareness or knowledge of their risk of experiencing premature menopause and FP options reported higher levels of decisional conflict regarding future FP. Posttreatment survivorship care should include comprehensive reproductive health counseling, including posttreatment FP options and family-building alternatives. Cancer 2016;122:2101-9. © 2016 American Cancer Society.


Subject(s)
Conflict, Psychological , Health Knowledge, Attitudes, Practice , Neoplasms/therapy , Survivors/psychology , Adult , Counseling , Cross-Sectional Studies , Decision Making , Female , Fertility Preservation , Humans , Neoplasms/psychology , Reproductive Health , Surveys and Questionnaires , Web Browser , Young Adult
12.
Subst Abus ; 37(4): 564-570, 2016.
Article in English | MEDLINE | ID: mdl-27648525

ABSTRACT

BACKGROUND: Despite overall reductions in teenage substance use, adolescent girls' rates of substance use remain unacceptably high. This article examines whether girls' substance use is associated with general risk and protective factors (goal setting, problem solving, refusal skills, peer use, and self-efficacy) and gender-specific risk and protective factors (communication style, coping skills, self-esteem, body image, perceived stress, anxiety, and depression). METHODS: Cross-sectional data were collected in 2013 via online surveys from a nationwide sample of adolescent girls (N = 788), aged 13 and 14 years, who were recruited through Facebook. RESULTS: In multivariate analyses, controlling for correlates of adolescent substance use, 11 of the 13 general and gender-specific risk and protective factors were consistently associated with past-month alcohol, cigarette, and other drug use in the expected direction; past-month marijuana use was associated with 8 of the 13 factors. Refusal skills, peer use, coping, and depressive mood were most consistently and strongly associated with substance use. CONCLUSIONS: Substance abuse prevention programs targeting adolescent girls should focus on such general risk and protective factors as problem solving, refusal skills, peer influences, and self-efficacy, as well as such gender-specific risk and protective factors as communication style, coping, self-esteem, body image, perceived stress, and mood management.


Subject(s)
Adolescent Behavior/psychology , Substance-Related Disorders/psychology , Adolescent , Cross-Sectional Studies , Female , Humans , Protective Factors , Risk Factors , Social Media , Surveys and Questionnaires
13.
Semin Radiat Oncol ; 34(4): 452-462, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39271280

ABSTRACT

With more treatment options in oncology lead to better outcomes and more favorable side effect profiles, patients are living longer-with higher quality of life-than ever, with a growing survivor population. As the needs of patients and providers evolve, and technology advances, cancer care is subject to change. This review explores the myriad of changes in the current oncology landscape with a focus on the patient perspective and patient-centered care.


Subject(s)
Neoplasms , Patient-Centered Care , Humans , Neoplasms/therapy , Quality of Life , Medical Oncology/methods
14.
J Am Coll Radiol ; 21(9): 1352-1361, 2024 Sep.
Article in English | MEDLINE | ID: mdl-38971414

ABSTRACT

INTRODUCTION: Financial toxicity is common among patients with cancer, as are co-occurring health-related social risks (HRSRs). There is limited evidence to support best practices in screening for HRSRs and financial toxicity in the cancer context. This analysis sought to understand variations of identified needs based on treatment course using data from a large screening program. METHODS: This 2022 to 2023 screening quality improvement program included four services (breast, gastrointestinal, gynecologic, thoracic) at an urban comprehensive cancer center. The Comprehensive Score for Financial Toxicity measured financial toxicity. Patients completed an HRSR checklist documenting food, housing, medication, or transportation insecurity and financial borrowing practices. Differences were evaluated by treatment course (radiation therapy [RT] versus other treatment and RT plus chemotherapy versus other treatment). RESULTS: Screening surveys were sent to 70,983 unique patients; 38,249 completed a screening survey (54% response rate). Of responders, 4% (n = 1,686) underwent RT in the 120 days before their survey, and 3% (n = 1,033) received RT in combination with chemotherapy. Overall, patients receiving RT had lower unadjusted Comprehensive Score for Financial Toxicity scores, indicating worse financial toxicity. The proportion of patients receiving RT reporting unmet transportation (15% versus 12%, P < .001) and food (13% versus 11%, P = .02) needs was significantly higher than for patients not receiving RT. More patients receiving RT borrowed money than did patients not receiving RT (17% versus 15%, P = .02). In multivariable models, RT (alone or in combination) was associated with worse financial toxicity and transportation difficulties. CONCLUSIONS: Screening for financial toxicity and HRSR is possible at a large cancer center. Patients receiving RT have higher transportation insecurity and worse financial toxicity compared with those receiving other treatments. Tailored intervention throughout the treatment trajectory is essential.


Subject(s)
Neoplasms , Quality Improvement , Humans , Female , Neoplasms/radiotherapy , Male , Middle Aged , Aged , Mass Screening/economics , Needs Assessment , Radiotherapy/economics , Radiotherapy/adverse effects , Adult , Surveys and Questionnaires
15.
Asia Pac J Oncol Nurs ; 11(8): 100545, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39234286

ABSTRACT

Objective: Despite the significance of research in nursing practice and its role in enhancing the quality of life for cancer patients, nurses report limited opportunities to engage with research. Known barriers include limited organizational support, a lack of time, resources, and knowledgeable colleagues/mentors. The study aims to determine research knowledge, attitudes, and practices among cancer nurses and understand factors influencing nurses' involvement in research. Methods: Registered nurses responded to a cross-sectional questionnaire. Data were collected using a modified version of the Nursing Research Knowledge, Attitudes, and Practices survey and the Barriers to Nurses' Participation in Research Questionnaire. Results: Three hundred and sixty-six nurses responded, of whom 15% had previously been involved in research. Nurses reported moderate to high research knowledge ( µ = 1.72), attitudes ( µ = 1.92), and practice ( µ = 1.79) scores. The most common barriers to engagement with research included a lack of time (78.0%), lack of incentive or reward (61.4%), lack of knowledge or skills (54.2%), lack of training opportunities (51.4%), and lack of experienced nursing research mentors (44.8%). Holding a specialist, advanced practice, or administrative role, and a postgraduate qualification were associated with higher scores on the knowledge, attitudes and practice subscales. Previous experience of conducting research was associated with higher knowledge and attitudes scores. Previous experience of authoring a paper and submitting a grant were associated with higher knowledge scores. Conclusions: The study reveals a moderate-to-high level of knowledge, attitudes, and practice regarding research among nurses, but low engagement. Barriers include lack of time, incentive, knowledge, training, and mentorship. Nevertheless, attitude scores, reflecting nurses' willingness to engage in research were high on average. The findings highlight the potentially modifiable nature of barriers to research engagement. Increasing capacity for nursing research may be achieved through investment in research support and training to overcome barriers to research, which may discourage nurses engagement.

16.
BMJ Open ; 14(6): e077154, 2024 Jun 04.
Article in English | MEDLINE | ID: mdl-38834320

ABSTRACT

OBJECTIVE: To explore the gaps in the safe handling, administration, preparation and disposal of chemotherapy agents in low and middle-income countries. DESIGN: Two surveys comprising a needs assessment survey and an American Cancer Society (ACS) ChemoSafe Facility Assessment. SETTING: 2019 African Research Group for Oncology Symposium in South-West Nigeria (needs assessment) and the 2021 virtual engagement (ChemoSafe Assessment). PARTICIPANTS: Health professionals (n=50 of 98) from multiple institutions across Nigeria (needs assessment survey) and a designated task force of health professionals (n=10) from one teaching hospital in Southwest Nigeria(ChemoSafe Facility Assessment). RESULTS: In 2019, 75% of survey respondents (n=50) reported a lack of training resources for safe handling of chemotherapy. Additionally, 61% felt dissatisfaction with assessment practices for preparing and administering chemotherapy. ChemoSafe is a programme developed by the ACS to assess the ability of a facility to handle hazardous drugs. The 2021 ACS ChemoSafe survey administered at one teaching hospital indicated several areas for improvement to promote concordance with international standards for safe handling. Thirty-three (19.5%) items received a 'Yes' response (ie, met compliance with international standards). CONCLUSION: There is a need for the implementation of training resources for handling, administering and disposing of chemotherapy at sites across Nigeria. Strategies to identify and prioritise areas of need must be implemented in the context of available resources.


Subject(s)
Antineoplastic Agents , Needs Assessment , Quality Improvement , Humans , Nigeria , Antineoplastic Agents/therapeutic use , Surveys and Questionnaires , Health Personnel/education , Neoplasms/drug therapy
18.
Cancer Epidemiol Biomarkers Prev ; 32(11): 1583-1590, 2023 11 01.
Article in English | MEDLINE | ID: mdl-37644659

ABSTRACT

BACKGROUND: U.S. cancer patients engage in administrative tasks to pay for their healthcare. This study investigated the relationship between payment tasks and timely access to cancer care. METHODS: We analyzed online survey data from 510 U.S. cancer patients and survivors to understand the relationship between administrative payment tasks and cost-related delays and nonadherence. Two-part modelling was used to determine if, and to what extent, there was a relationship between administrative burden and cost-related delays/nonadherence. RESULTS: Younger patients (≤44 years) reported more payment tasks and cost-related delays/nonadherence than older patients (≥ 55 years); African American patients reported more payment tasks and cost-related delays/nonadherence than white patients. After accounting for age, race/ethnicity, education, and out-of-pocket costs, patients who reported engaging in more tasks had greater log odds of delaying/forgoing care [b = 0.18; 95% confidence interval (CI), 0.12-0.24]. Cost-related delays/nonadherence increased by 32% for every unit increase in administrative payment burden (b = 0.32; 95% CI, 0.18-0.46). CONCLUSIONS: Administrative payment burden increased the odds of cost-related delays and nonadherence by 49%, taking the form of delayed or skipped doctor appointments, tests and bloodwork, and prescription fulfillment. Younger patients and those identifying as African American were more likely to engage in payment tasks and to delay or forgo care due to cost. Administrative burdens can disrupt access to care and traditionally underserved patient populations are disproportionately exposed to these hardships. IMPACT: Reducing the complexity of healthcare through universal, human-centered design could reduce burdens and increase access.


Subject(s)
Delivery of Health Care , Neoplasms , Humans , Neoplasms/therapy , Ethnicity , Health Expenditures , Medically Underserved Area
19.
JAMA Netw Open ; 6(10): e2338182, 2023 10 02.
Article in English | MEDLINE | ID: mdl-37851442

ABSTRACT

Importance: Prior authorization (PA) requires clinicians and patients to navigate a complex approval pathway. Resultant delays and denials can be particularly problematic for patients with cancer, who often need urgent treatment or symptom management. Objective: To investigate the patient perspective of PA for cancer-related care, including perceptions about the process, outcomes (including delays and denials), and patient administrative burden. Design, Setting, and Participants: This cross-sectional, anonymous survey used a convenience sample of patients with PA experience. Participants were recruited using social media and email lists of US-based cancer advocacy organizations from July 1 to October 6, 2022. Exposure: Prior authorization for any cancer-related service. Main Outcomes and Measures: Delays to care, outcome of PA, communication, and changes in anxiety (measured on a scale of 0-100, with 0 indicating no anxiety and higher scores indicating higher levels of anxiety) and trust. Results: Of 178 respondents (158 women [88%], 151 non-Hispanic White respondents [84%], 164 respondents [92%] <65 years), 112 (63%) reported that their cancer care was approved and given as recommended, and 39 (22%) did not receive recommended care due to delays or denials. Most respondents (123 [69%]) reported a PA-related delay in care; of those with delayed care, 90 (73%) reported a delay of 2 or more weeks. Most respondents (119 [67%]) had to personally become involved in the PA process; 35 (20%) spent 11 or more hours dealing with PA issues. Overall, the PA experience was rated as bad (70 [40%]) or horrible (55 of 174 [32%]); ratings were associated with the length of delay (ρ = 0.36; P < .001) and the time spent on PA (ρ = 0.42; P < .001). Self-reported PA-related anxiety was higher than usual anxiety (mean [SD] score, 74.7 [20.2] vs 37.5 [22.6]; P < .001) and was correlated with delay length (ρ = 0.16; P = .04), time spent on PA (ρ = 0.27; P < .001), and overall PA experience (ρ = 0.34; P < .001). After PA, 159 respondents (89%) trusted their insurance company less, and 148 respondents (83%) trusted the health care system less. Patient involvement in the PA process was associated with increased odds of distrusting their insurance company (ß = 6.0; 95% CI, 1.9-19.2) and the health care system (ß = 3.3; 95% CI, 1.4-8.1) and of having a negative experience (ß = 6.6; 95% CI, 3.1-14.3). Conclusions and Relevance: This survey-based cross-sectional study of the patient experience with PA highlights an adverse outcome of PA: 22% of patients did not receive the care recommended by their treatment team because of PA. Most respondents experienced a delay in recommended oncology care, and delays were associated with increased anxiety, a negative perception of the PA process, and patient administrative burden.


Subject(s)
Neoplasms , Prior Authorization , Humans , Female , Cross-Sectional Studies , Surveys and Questionnaires , Neoplasms/therapy , Patient Outcome Assessment
20.
J Adolesc Young Adult Oncol ; 12(3): 408-415, 2023 Jun.
Article in English | MEDLINE | ID: mdl-36169520

ABSTRACT

Purpose: Adolescent and young adult (AYA) survivors are at-risk for cancer-related financial difficulties (i.e., financial toxicity [FT]). Family building after cancer often requires reproductive medicine or adoption with high costs; AYAs experience financial barriers to family building. This study evaluated the relationships among cancer FT, reproductive concerns, and decision-making processes about family building after cancer. Methods: AYA female (AYA-F) cancer survivors completed a cross-sectional survey including measures of FT, reproductive concerns, decisional conflict about family building, and decision-making self-efficacy. Differences across FT subgroups (i.e., no/mild, moderate, and severe FT) were tested. Linear regression evaluated the relationships between FT and reproductive concerns and decision-making processes. Results: Participants (N = 111) averaged 31.0 years (standard deviation [SD] = 5.49), 90% were nulliparous, and 84% were employed full/part-time. The overall FT levels were in the "moderate" range (M = 20.44, SD = 9.83); 48% worried quite a bit or very much about financial problems because of cancer. AYA-Fs reporting severe FT (24% of sample) experienced higher levels of reproductive concerns compared with those reporting no/mild and moderate FT. Those reporting moderate FT (46% of sample) reported greater decisional conflict about family-building options, compared with the no/mild FT subgroup. Both moderate and severe FT subgroups reported lower decision-making self-efficacy compared with the no/mild FT subgroup. In separate models controlling for covariates, greater FT related to higher levels of reproductive concerns (B = -0.39, p < 0.001), greater decisional conflict about family building (B = -0.56, p = 0.02), and lower decision-making self-efficacy (B = 0.60, p = 0.01). Conclusions: Given the high costs of reproductive medicine and adoption, fertility counseling pre- and post-treatment must address survivors' financial concerns and barriers.


Subject(s)
Neoplasms , Survivorship , Young Adult , Adolescent , Humans , Female , Financial Stress , Cross-Sectional Studies , Reproduction , Counseling , Neoplasms/psychology
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