Cancer Care Experience Research Articles

Interventions to improve access to cancer care in underserved populations in high income countries: a systematic review.

Underserved populations both globally and in Canada face serious cancer inequities that result from systemic economic, environmental, and social conditions. These pose barriers in access to cancer care and lead to suboptimal cancer care experiences and outcomes. Knowledge of effective interventions to improve access to cancer care is needed to inform the design of tailored interventions for these populations. To identify interventions and programs to improve access to cancer care for underserved populations in high income countries with universal health coverage (UHC) and the United States (US) throughout the cancer care continuum. We conducted a systematic review following the PRISMA standards. We searched Medline, EMBASE, PsycINFO, CINAHL, Scopus, and the Cochrane Library. Inclusion criteria: quantitative and qualitative studies published in English in the last 10years (2013-2023), describing interventions/programs to improve access to cancer care for underserved populations (18years and over). We included studies in the US given the body of scholarship on equity in cancer care in that country. Screening, data extraction and analysis were undertaken by two independent reviewers. Our search yielded 7,549 articles, and 74 met the inclusion criteria. Of these, 56 were conducted in the US, 8 in Australia, 6 in Canada, and 4 in the United Kingdom. Most (90.5%) were quantitative studies and 47.3% were published between 2020-2023. Seven types of interventions were identified: patient navigation, education and counselling, virtual health, service redesign, financial support, improving geographical accessibility and multicomponent interventions. Interventions were mainly designed to mitigate language, distance, financial, lack of knowledge and cultural barriers. Most interventions focused on access to cancer screening, targeted rural populations, racialized groups and people with low socioeconomic status, and were conducted in community-based settings. The majority of interventions or programs significantly improved access to cancer care. Our systematic review findings suggest that interventions designed to remove specific barriers faced by underserved populations can improve access to cancer care. Few studies came from countries with UHC. Research is required to understand tailored interventions for underserved populations in countries with UHC.

Exploring disparities in healthcare utilization, cancer care experience, and beliefs about cancer among asian and hispanic cancer survivors.

Significant disparities exist in cancer detection, treatment, and outcomes for racial/ethnic minoritized groups in the US. The objective of this study was to explore racial/ethnic disparities in healthcare utilization, cancer care experiences, and beliefs about cancer in patients diagnosed with cancer among diverse racial/ethnic groups in the US. Data from the Health Information National Trends Survey -Surveillance, Epidemiology, and End Results (HINTS-SEER 2021) were analyzed for 1,108 cancer survivors. Bivariate analysis of the study variables with race/ethnicity were conducted with weighted analysis from STATA version 17.Sampling weights using svy was conducted. Racial/ethnic differences in healthcare utilization remained significant when controlling for the confounding factors. Asians and Hispanics were less likely to have a regular healthcare provider compared to non-Hispanic whites (NHW) (aOR = 3.31, p = .003; aOR = 2.17, p = .014; respectively). Asians were less likely than NHW to have had healthcare provider visits in the past 12months (aOR = 4.89, p = .011). There were no statistically significant differences between racial/ethnic groups in the cancer care experiences. Racial/ethnic differences in fatalistic beliefs about cancer were not significant in the final multivariate model; however, being older (β = -.41, p = .033), and having a higher education level (β = -1.23, p < .001), were associated with lower level of fatalistic beliefs about cancer. The findings suggest tailored approaches to improve healthcare utilization rates among racial/ethnic minoritized groups and highlight the need for increased research and clinical practice efforts to address racial/ethnic disparities in the cancer care continuum.

Understanding the relative impact of ethnicity and sex on patient experience in cancer care.

247 Background: Patient experience is a key indicator of healthcare quality and outcomes. Research suggests that patient ethnicity and sex have a significant impact on patient experience scores. Therefore, our hospital created a process for continuously monitoring patient experience scores stratified by patient demographic data. In 2021, this process caught what appeared to be a significant drop in some areas of patient experience for non-white female inpatients. This drop prompted an investigation that attempted to better understand the relative impact of ethnicity and sex on patient experience at our hospital. Methods: We conducted a cross-sectional study using 13,560 Press Ganey inpatient experience surveys collected from 11,435 unique patients between 2021 and 2023 at Memorial Sloan Kettering Cancer Center. This investigation analyzed the responses to “likelihood of recommending this hospital to others” using a ordinal logistic regression model including patient ethnicity, sex, language, age, expected mortality on admission, admitting department, insurance, marital status, and length of stay observed to expected ratio. Results: Asian (odds ratio [OR] 0.51, 95% confidence interval [CI] (-0.86,-0.47), p=1.98e-11), female (odds ratio [OR] 0.76, 95% confidence interval [CI] (-0.38,-0.15), p=2.76e-06), and patients admitted to emergency departments female (odds ratio [OR] 0.59, 95% confidence interval [CI] (-0.73,-0.30), p=1.65e-06) reported lower scores than white, male, and patients admitted to medicine. Differences associated with marital status, patient insurance, and patient primary language were insignificant. The largest impact on patient experience was the patient’s expected mortality (odds ratio [OR] 0.30, 95% confidence interval [CI] (-2.20,-0.19), p=1.98e-02). Patients with higher expected mortality were much more likely to give low scores. Non-white patients were also more likely to have high expected mortality when compared to their white counterparts (p = 1.90e-24). Conclusions: Our study suggests that while a patient’s expected mortality on admission has the largest impact on patient experience scores. There are also significant differences in patient experience scores based on ethnicity and sex, but they are relatively small in magnitude. The data suggests that focusing on the intersection of high expected mortality and female patients could be an effective method for improving healthcare quality and outcomes. We recommend additional exploration of end of life care and its interactions with patient experience to better understand optimal methods and times for process improvement projects.

Qualitative acceptability testing of a paper-based care planner in patients with metastatic non-small cell lung cancer (mNSCLC).

259 Background: Patients with cancer and their caregivers often describe the fragmented, multi-modal and multi-provider cancer care experience as undertaking a difficult expedition without a map. Based on her experience in 2020 and using self and family management theories (doi: 10.1016/j.outlook.2008.10.004.), Daswani developed a pan-cancer patient planner, which helps patients and families prepare for appointments, track symptoms, and manage their care. It has been available since 2021 through hospitals, advocacy organizations and online retail channels. We adapted and customized the pan-cancer planner for patients with mNSCLC. We tested acceptability through a series of structured patient interviews, and a brief, in-person survey tool. Methods: A lung cancer survivor recruited members of the lung cancer community to participate in a 30-minute structured virtual interview. After reviewing the planner, interviewees were asked: 1) about their diagnosis and treatment experience and 2) to provide semi-structured feedback. We conducted interviews until thematic saturation was reached. We modified the planner based on interview results, distributed planners to patients and care-partners at a major lung cancer patient summit and immediately collected a brief survey to assess patient knowledge of their diagnosis and motivation for planner access. Results: The table shows high level thematic groups of interview responses. Interviewed patients concluded that the planner would have improved their experience because they would have: Stayed organized, facilitated note-taking during appointments, better tracked and managed symptoms &amp; meds, been more confident in decision-making and been able to journal, stay grounded and more mindful. Of 94 planners distributed at the summit, 49 patients knew their diagnosis, 31 knew their stage, 28 knew their cancer mutation status. Of the four domains of self-management, positive responses were: 1. Increase confidence 44 (47%) 2. Gain peace of mind 40 (43%) 3. Stay organized 58 (62%) 4. Manage meds &amp; symptoms 42 (45%). Conclusions: A paper based mNSCLC specific planner is acceptable to patients and they anticipate it would help with all four domains of self management (confidence, peace of mind, organization, med and symptom management) and enhance a difficult experience. We plan further usability testing as we did with the breast cancer planner (JCO Oncol Pract 19, 2023 (suppl 11; abstr 552)). Interviews of 8 (7 female, 1 male) patients (3 with English as a second language) were held in December 2023. Diagnosis Biomarker Testing Treatment Living with lung cancer Medical terms difficult to understand “Mutation” term caused anxiety Understanding options important Need for community Diagnosis often delayed Loss of agency Gratitude for care team Digital tools desired Cumulative trauma Additional languages Young adult survivorship desired

Abstract B168: A qualitative examination of how state policy and sociopolitical environmental influence experiences of cancer care for minoritized sexual and gender populations who have experienced breast cancer

Abstract Introduction: A growing body of literature is investigating how structural barriers, including policies, impact cancer outcomes among marginalized populations, including the 2SLGBTQ+ (two spirit, lesbian, gay, bisexual, transgender, queer, asexual, intersex, and gender non- conforming or gender non-binary)(sexual and gender minoritized (SGM)) communities. An underresearched area is how the state-level policy and sociopolitical environment shape the experiences and outcomes of SGM people who have experienced breast cancer. Using data from the Elsie Study, this research examines how SGM people who have experienced breast cancer are impacted by their state’s policies and sociopolitical context. To the authors' knowledge, this study is the first of its kind to examine these experiences of breast cancer care for SGM people. Methods: The Elsie Study is the largest qualitative survey of SGM people who have experienced cancer conducted within the U.S. To date the Elsie Study at the University of Minnesota has conducted 60-90 minute semi-structured interviews with thirteen sexally and gender minoritized people who have experienced breast cancer. Our participants were recruited from advertising campaigns on social dating applications, including HER, and community organizations. Interviews were conducted nationwide over Zoom and phone beginning in June 2023 and continuing through June 2024. Summary of data: Our participants who have experienced breast cancer have diverse sexual orientations, gender identities, and racial and ethnic backgrounds. Among the thirteen sexually and gender minoritized participants who experienced breast cancer, their sexual orientations encompass those who identify as lesbian, gay, bisexual, queer, or some of these interchangeably. Participants’ gender identities include identifying as cisgender woman, genderqueer, non-binary, transgender man, and transgender woman. Participants’ racial and ethnic backgrounds are white, Black or African American, Latino/a/x, and Asian. Participants at the intersections of marginalized identities noted substantial difficulties in receiving culturally competent care during breast cancer treatment. A majority of SM and GM women and non-binary participants mentioned the importance of living in a “queer and trans friendly state,” liberal cities, or states with marriage equality for aspects such as accessing culturally competent cancer care and participating in cancer research. Conclusions: Narratives such as those expressed by our SGM participants who experienced cancer are important for understanding how state policy and sociopolitical contexts shape access to healthcare and even cancer research. Our study has wide implications for how affirming state policy and sociopolitical climates may afford more equity in cancer care for SGM people. Citation Format: Courtney Sarkin, Alexandra M. Ecklund, Ben Weideman, Rhea Alley, B.R. Simon Rosser, G. Nic Rider. A qualitative examination of how state policy and sociopolitical environmental influence experiences of cancer care for minoritized sexual and gender populations who have experienced breast cancer [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B168.

Abstract B039: Increasing clinical trial enrollment rates of black women with breast cancer with the use of Patient Navigation

Abstract Background The positive impact of clinical trials is clear in breast cancer, with a five-year survival rate of 90%. While black women represent 12% of breast cancer cases in the US, they comprise 3% of participants in clinical trials. At the Vanderbilt Ingram Cancer Center (VICC), black patients represent 9% of all breast cancer patients, but only 4% of those enrolled in clinical trials. Objective This pilot study will evaluate the role of Patient Navigators (PNs) to increase knowledge of and enrollment on clinical trials among black women with breast cancer at the Breast Cancer Clinic at VICC. Methods All black women in the Breast Clinic at VICC are offered Patient Navigation (PN) services. Those who consent complete a needs assessment and are provided PN as needed up to the duration of their treatment. As part of the PN, patients are provided with educational material about clinical trials as well as assistance with identified needs. Patients are surveyed one-month following the start of the navigation experience. We will compare clinical trial enrollment rates among eligible black women with breast cancer during the study period with historical controls. Covariates of analysis will include age, stage, histology and insurance status. Results From February through May 2024, we have approached 33 patients for PN assignment. Of the 29 patients who accepted a PN, only one was eligible for a clinical trial and was enrolled in the trial. Of 14 patients who completed the first post-navigation survey, 12 stated that PNs improved their cancer care experience, and all 14 found meetings with PNs to be valuable. Additionally, 11 patients reported that they knew very little to nothing about clinical trials prior to PN intervention and 8 reported having increased knowledge following PN. Of 12 respondents, 6 reported that they would be more likely to enroll on a clinical trial as a result of PN, and 9 of 14 indicated that they would share information about clinical trials with others. Conclusions With exceptional survival rates in breast cancer, it is imperative that there is equity in opportunity for enrollment in clinical trials for all patients. Patient navigation may target barriers to access to and increase knowledge of clinical trials and diminish cancer health disparities. As accrual continues in our pilot study, we will examine the impact of PN on enrollment in clinical trials, while also identifying other potential benefits for overall patient care. Citation Format: Tina S. Chai, Sonya Reid, Tuya Pal, Karen Winkfield, Clorissa Campbell, Courtney Thomas, Meredith Smalls, Emma Schremp, Debra Friedman. Increasing clinical trial enrollment rates of black women with breast cancer with the use of Patient Navigation [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B039.

CC-Connect: Identifying solutions to elevating the cancer experience for adolescents and young adults (AYA) with cancer.

Adolescents and young adults with cancer (AYAs, aged 15 to 39 years) experience unique challenges due to their developmental life stage, and many have limited access to support and resources. CC-Connect, the patient assistance component of the White House Cancer Moonshot CC-DIRECT initiative that aims to help childhood cancer families find the best care for their child, undertook a multipronged effort to identify key strategies for addressing the unique needs of AYAs with cancer. This paper describes the four strategies that emerged to form a comprehensive framework for addressing the unmet needs of AYAs with cancer, which can improve outcomes and enhance the cancer care experience for this vulnerable population.

CN66 Healthcare needs, experiences of cancer care, and attitudes towards cancer among ethnic Chinese immigrants in Scotland

CN66 Healthcare needs, experiences of cancer care, and attitudes towards cancer among ethnic Chinese immigrants in Scotland

What Is the Cancer Care Experience for LGBTQI+ Patients?

What Is the Cancer Care Experience for LGBTQI+ Patients?

Identifying the drivers of overall rating of cancer care: Insights from the second wave of the Swiss Cancer Patient Experiences study.

Patient experience surveys gather information on various aspects of care via numerous survey items. Identifying the most critical areas of patient experience to prioritize for quality care improvement can be challenging. The objective of this study was to determine which care experience items are the drivers influencing patients' overall rating of cancer care. Data from 2750 adult patients with cancer from the second wave of the Swiss Cancer Patient Experiences study were analyzed. This cross-sectional survey was conducted in eight Swiss hospitals from September 2021 to February 2022. Stepwise logistic regression examined the relationship between overall care rating and 29 patient experience items covering different patient-centered care dimensions while adjusting for sociodemographic and health variables. Overall, patients rated their cancer care experience at 8.9 out of 10. Stepwise regression identified seven drivers contributing to overall care rating. The strongest drivers were "professionals worked well together" (odds ratio [OR],4.81) and "tests were not repeated" (OR,2.09) from the coordination and integration dimension, "offered support for symptoms during treatment" (OR,2.11) from the physical comfort dimension, followed by "hospital staff ensured available home support" (OR,1.99), "offered to see health professional for concerns" (OR,1.91), "treatment options were explained" (OR,1.75), and "involved in treatment decisions as desired" (OR,1.68). This study evaluated the care experiences of patients with cancer with a comprehensive tool that identified seven key factors independently associated with overall care rating. By concentrating on these areas, hospitals can not only improve the patient care experience but also efficiently allocate resources to quality improvement initiatives.

Understanding the impact of distance and disadvantage on lung cancer care and outcomes: a study protocol

BackgroundLung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging. This place-based, behavioural science-informed qualitative study aims to explore how person-related characteristics interact with a person’s location relative to specialist services to impact their engagement with the optimal lung pathway, and to compare and contrast experiences in rural, coastal, and urban communities. This study also aims to generate translatable evidence to inform the evidence-based design of a patient engagement intervention to improve lung cancer patients’ and informal carers’ participation in and experience of the lung cancer care pathway.MethodsA qualitative cross-sectional interview study with people diagnosed with lung cancer < 6 months before recruitment (in receipt of surgery, radical radiotherapy, or living with advanced disease) and their informal carers. Participants will be recruited purposively from Barts Health NHS Trust and United Lincolnshire Hospitals NHS Trusts to ensure a diverse sample across urban and rural settings. Semi-structured interviews will explore factors affecting individuals’ capability, opportunity, and motivation to engage with their recommended diagnostic and treatment pathway. A framework approach, informed by the COM-B model, will be used to thematically analyse facilitators and barriers to patient engagement.DiscussionThe study aligns with the current policy priority to ensure that people with cancer, no matter where they live, can access the best quality treatments and care. The evidence generated will be used to ensure that lung cancer services are developed to meet the needs of rural, coastal, and urban communities. The findings will inform the development of an intervention to support patient engagement with their recommended lung cancer pathway.Protocol registrationThe study received NHS Research Ethics Committee (Ref: 23/SC/0255) and NHS Health Research Authority (IRAS ID 328531) approval on 04/08/2023. The study was prospectively registered on Open Science Framework (16/10/2023; https://osf.io/njq48).

Socioeconomic inequities in care experienced by women with breast cancer in England: An intersectional cross-sectional study

PurposeGuided by the Intersectionality Framework, we examined the differential in breast cancer care experience across population subgroups in England. MethodsSecondary data analysis using the 2017/2018 National Cancer Patient Experience Surveys. We used disaggregated descriptive statistics (mean, standard errors, 95% confidence interval) to analyse 26,030 responses from female breast cancer patients to a question relating to overall care experience categorised by age, ethnicity, and sexual orientation in their intersection with social position. We then used logistic regression to investigate the odds (Odds Ratio (OR), 95% confidence intervals) of reporting positive care experience adjusting for patient, clinical, and Trust level factors. ResultsPoorer care experience was predominantly reported by the most deprived younger and minoritised ethnic groups. Statistically significant findings were observed in adjusted multivariable analyses. Compared to patients aged 65–74 years, younger respondents were less likely to rate their care favourably (16–34 years old ORadj. = 0.55 (0.36–0.84). Compared to White British, Asian (ORadj. = 0.51 (0.39–0.66)) and Black African women (ORadj. = 0.53 (0.33–0.88)) were less likely to rate their care favourably. The least affluent respondents were less likely to rate their care favourably (ORadj. = 0.79 (0.64–0.97)). ConclusionThere is evidence of inequity in overall cancer care experience among female breast cancer patients in England, particularly among women living at the specific intersection of age, ethnicity, and socioeconomic position. Future research is necessary to understand the mechanisms underlying breast cancer inequities. Policymakers, commissioners, and providers should consider the existence of multiple forms of marginalisation to inform improvement initiatives targeting patients at higher risk of vulnerability.

People affected by cancer and their carers from gender and sexually diverse communities: their experiences and the role of smartphone applications

BackgroundPeople living with cancer, or carers who are from lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities experience unique information and support needs. Accessible technology-based resources providing tailored support are required to promote wellbeing, however this is a growing area of research requiring further investigation. The purpose of this study was to explore the experiences of healthcare services among people living with cancer, and their carers, who belong to sexual or gender diverse communities (LGBTQIA+), and identify how smartphone applications (apps) could support people from LGBTQIA + communities.MethodsThis was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes.Results13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified.ConclusionDisclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants’ experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.

Abstract PO4-23-06: Outcomes and experiences of women denied immediate breast REconstruction after maSTectOmy for bREast cancer during the COVID-19 pandemic - The RESTORE C19 Study

Abstract Introduction 40% of women diagnosed with breast cancer in the UK each year undergo mastectomy and immediate breast reconstruction (IBR) is routinely offered to improve quality of life. During COVID19, this offer was withdrawn to prioritise frontline and emergency services. The RESTORE C19 study aimed to use mixed methods to explore the outcomes, lived experiences and views of women denied IBR during the pandemic. Methods Women not offered IBR between March &amp; October 2020, were identified via B-Map-C, a UK prospective multicentre cohort study documenting changes in breast cancer treatment decisions during the pandemic. All patients were followed up between December 2021 &amp; July 2022 (21-28 months following mastectomy) to explore their ongoing management including whether they had undergone, were awaiting, or had decided against delayed breast reconstruction (DBR) and the procedures performed. Descriptive statistics were used to summarise results. Semi-structured qualitative interviews were undertaken to explore the experiences of this group in more depth. Women were purposively sampled based on treatment centre, age, decision regarding DBR, and procedure performed. A topic guide was developed to explore experiences of breast cancer care; feelings about not having been offered IBR and factors influencing subsequent surgical decision-making. Interviews were transcribed in full and analysed thematically, with data collection and analysis undertaken concurrently and iteratively until saturation was achieved. Full ethical approval was obtained: IRAS 302580, Wales REC 4 21/WA/0347. Results Some 366 women were identified as not having been offered IBR in the B-MaP-C study for whom follow up data was available for 311 (85.0%) from 55 centres. The median age was 50 (range 27-83 years). Most women presented with symptomatic breast cancer (n=239, 76.8%), were fit with no significant comorbidities, had T1 or 2 tumours (n=215, 69.1%) and were node negative (n=186, 59.6%). Almost a fifth (n=58, 18.6%) of women had decided against breast reconstruction completely. Of the remainder, just under 60% (n=149/253), had attended a surgical consultation to discuss DBR and only a third (n=91/253, 36%) had been referred to plastic surgical services to discuss autologous procedures. Only 21 women (6.8%) had received DBR; (16 free flaps, 4 implants, 1 pedicled flap+/-implant). Interviews were performed with 18 women from 5 centres with a median age of 49 years (range 34-67): n=5 women had either received/were awaiting DBR; n=4 had undergone/were awaiting contralateral symmetrising mastectomy and n=9 had decided against/were undecided about further surgery. Whilst all women reported feeling ‘grateful’ for their breast cancer treatment, some felt ‘abandoned’ by healthcare professionals, others that they needed to chase breast surgical teams for care, advice, and support. Partners were also impacted by their experiences with some women describing lasting effects on their relationships. Many women described how their desire for symmetry, either by breast reconstruction or symmetrising mastectomy, had “paled into insignificance” in the months and years following treatment. Conclusions The impact of COVID19 continues to be felt by women treated for breast cancer in the UK. Most women not offered IBR are either still awaiting DBR almost three years after their initial mastectomy or have decided against further surgery. The interviews highlight the trauma many women experienced receiving breast cancer treatment during the pandemic and ongoing issues that, for some, are yet to be fully addressed. There is a need for individualised support to provide women with equitable and timely access to DBR and/or symmetrising mastectomy depending on patient preference to help them move on with their lives. Citation Format: Katherine Fairhurst, Rajiv Dave, Baek Kim, Rachel O'Connell, Raghavan Vidya, P.G. Roy, Stuart McIntosh, Patricia Fairbrother, Jo Skillman, Leila Rooshenas, Shelley Potter. Outcomes and experiences of women denied immediate breast REconstruction after maSTectOmy for bREast cancer during the COVID-19 pandemic - The RESTORE C19 Study [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-23-06.

Cancer in prison: barriers and enablers to diagnosis and treatment

Approximately 82,000 people are in prison annually in England and Wales. Limited research has investigated cancer in this population and none has explored experiences of imprisoned people with cancer. This study aimed to address this gap. We conducted 55 semi-structured, qualitative, audio-recorded interviews with: imprisoned people with cancer (n=24), custodial staff (n=6), prison healthcare staff (n=16) and oncology specialists (n=9). Data were collected 07/10/2019-20/03/2020. Patients were recruited by prison healthcare staff and interviews were conducted face-to-face. Professionals were recruited via professional networks and interviews were conducted face-to-face or via telephone. Transcribed interviews were analysed using reflexive thematic analysis. We also analysed relevant National Cancer Patient Experience Survey (NCPES) questions for those diagnosed in prison (n=78) and in the general population (n=390). Our findings highlight the complexities of cancer care for imprisoned people. We identified three core themes: control and choice, communication, and care and custody. Whilst people in prison follow a similar diagnostic pathway to those in the community, additional barriers to diagnosis exist including health literacy, the General Practitioner appointment booking system and communication between prison and oncology staff. Tensions between control and choice in prison impacted aspects of cancer care experience such as symptom management and accessing cancer information. NCPES results supported the qualitative findings and showed people in prison reported significantly poorer experiences than in the general population. Our findings demonstrate the complexity of cancer care in custodial settings, identifying barriers and enablers to equitable cancer care provision and offering insights on how to improve care for this population. National Institute for Health and Social Care Research Delivery Research Programme 16/52/53 and Strategic Priorities Fund 2019/20 Research England via University of Surrey.

Cancer Screening and Prevention in the Transgender and Gender Diverse Population: Considerations and Strategies for Advanced Practice Nurses

ObjectivesThis discussion paper presents recent evidence regarding cancer screening and prevention among the transgender and gender diverse (TGD) community and highlights where and how advanced practice nurses (APNs), particularly those in primary care, can better contribute to closing the gap between healthcare disparities between TGD and cisgendered populations. MethodsRelevant publications on the topic and professional guidelines and evidence have formed the basis for this discussion paper. ResultsTGD individuals are a vulnerable population with unique needs. They remain at risk of cancer and might be at greater risk of developing some cancers compared to cisgendered people but are underscreened. Barriers to gender-affirming care need to be addressed to improve access to prevention and screening services and improve the cancer care experiences and outcomes of TGD people. ConclusionAPNs can work in collaboration with TGD individuals and the healthcare system to improve access to culturally safe cancer screening and more effective prevention of cancer and poor cancer outcomes. Implications for Nursing PracticeAPNs have the potential to improve access to cancer screening for TGD people by increasing their understanding of the needs of the population, providing culturally safe care, and advocating for more preventative care and cancer screening. With greater knowledge and understanding of the needs and preferences of TGD people both broadly and in relation to cancer screening and prevention, targeted interventions and care approaches can be implemented. APNs should also aim to conduct evaluations and research into cancer prevention and screening to build the currently limited evidence base and nursing knowledge in this important field.

Digital Health Platforms for Breast Cancer Care: A Scoping Review.

Breast cancer is a significant global health concern affecting millions of women each year. Digital health platforms are an easily accessible intervention that can improve patient care, though their efficacy in breast cancer care is unknown. This scoping review aims to provide an overview of existing research on the utilization of digital health platforms for breast cancer care and identify key trends and gaps in the literature. A comprehensive literature search was conducted across electronic databases, including Ovid MEDLINE, Elsevier EMBASE, and Elsevier Scopus databases. The search strategy incorporated keywords related to "digital health platforms", "breast cancer care", and associated terminologies. After screening for eligibility, a total of 25 articles were included in this scoping review. The identified studies comprised mobile applications and web-based interventions. These platforms demonstrated various functionalities, including patient education, symptom monitoring, treatment adherence, and psychosocial support. The findings indicate the potential of digital health platforms in improving breast cancer care and patients' overall experiences. The positive impact on patient outcomes, including improved quality of life and reduced psychological distress, underscores the importance of incorporating digital health solutions into breast cancer management. Additional research is necessary to validate the effectiveness of these platforms in diverse patient populations and assess their impact on healthcare-resource utilization.

Abstract 6297: “They should get a cardiologist to be a part of the team when you first go”: A qualitative analysis of racial differences in the cancer care experience amongst breast cancer patients receiving cardiotoxic therapy

Abstract Background: Black breast cancer survivors are up to three times more likely to develop cancer therapy-related cardiac dysfunction (CTRCD) when compared to White survivors. Reasons behind this disparity are not fully understood, and studies examining these disparities have been limited. One contributor may be variations in communications about CTRCD risk and risk prevention strategies between providers and patients by race and ethnicity. This study assessed racial differences in Black versus White breast cancer patients with provider communication regarding cardiotoxic treatments. Methods: Study participants were recruited from a comprehensive cancer center. Eligibility included identifying as a Black/African American or White woman, a diagnosis of stage I-III breast cancer, and receipt of anthracyclines and/or trastuzumab. Semi-structured interviews were conducted with survivors. Interviews were audio-recorded, transcribed, and were reconciled using Dedoose. Results: Interviews were conducted with 16 survivors (8 Black, 8 White) with a median age at diagnosis of 53 years. Prior to starting treatment, 100% of white survivors reported that a provider discussed CTRCD risk, however only 75% black survivors reported CTRCD discussion. Although all women received information on prevention strategies including exercise and nutrition, there were differences in timing of information delivered. Black women desired to have information at the beginning of treatment, but no White women mentioned a desire to receive information earlier. A greater proportion of White women reported engaging in prevention strategies such as exercising and eating healthy during treatment. In terms of knowledge gained, 75% of White Women reported being satisfied with the information given regarding cardiotoxic risk and prevention whereas only 45% of Black women reported being satisfied.As 65% of Black women (vs. White) reported being less than satisfied with the information given, Black women were also more likely to recommend access to additional resources. For example, one Black woman suggested that “they [care team] should get a cardiologist to be a part of the team when they first go. Conclusion &amp; Implications: Fewer Black women reported being satisfied with their medical visits regarding CTRCD risk and prevention strategies. Racial differences in assessments of these experiences highlight opportunities to develop culturally-tailored communication interventions to reduce racial disparities in CTRCD; however, future research is needed to assess interpersonal aspects of care during the receipt of cardiotoxic treatment. Citation Format: Ashley Turner, America Vijil, Sara Gómez-Trillos, Victoria Williams, Paulette Omeaku, Susan Hong, Arnethea L. Sutton. “They should get a cardiologist to be a part of the team when you first go”: A qualitative analysis of racial differences in the cancer care experience amongst breast cancer patients receiving cardiotoxic therapy [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 6297.

Systematic review of Aboriginal and Torres Strait Islander peoples’ experiences and supportive care needs associated with cancer

BackgroundPersistent disparities exist between Aboriginal and Torres Strait Islander peoples (the Indigenous peoples of Australia) and non-Indigenous Australians associated with cancer, with Aboriginal and Torres Strait Islander peoples experiencing a longer time to treatment, higher morbidity rates, and higher mortality rates. This systematic review aimed to investigate findings and recommendations in the literature about the experiences and supportive care needs of Aboriginal and Torres Strait Islander peoples with cancer in Australia.MethodsA qualitative systematic review was conducted using thematic analysis. Database searches were conducted in CINAHL, Informit, MEDLINE, ProQuest, Scopus, and Web of Science for articles published between January 2000 and December 2021. There were 91 included studies which were appraised using the Mixed Methods Appraisal Tool. The included studies reported on the experiences of cancer and supportive care needs in Aboriginal and Torres Strait Islander populations.ResultsSix key themes were determined: Culture, family, and community; cancer outcomes; psychological distress; access to health care; cancer education and awareness; and lack of appropriate data. Culture was seen as a potential facilitator to achieving optimal cancer care, with included studies highlighting the need for culturally safe cancer services and the routine collection of Aboriginal and Torres Strait Islander status in healthcare settings.ConclusionFuture work should capitalize on these findings by encouraging the integration of culture in healthcare settings to increase treatment completion and provide a positive experience for Aboriginal and Torres Strait Islander peoples with cancer.

Experiences of hereditary cancer care among transgender and gender diverse people: "It's gender. It's cancer risk…it's everything".

Transgender and gender diverse (TGD) individuals are a significant yet underrepresented population within genetic counseling research and broader LGBTQI+ health studies. This underrepresentation perpetuates a cycle of exclusion from the production of medical knowledge, impacting the quality and equity of care received by TGD individuals. This issue is particularly poignant in cancer genetic counseling, where TGD individuals with elevated cancer risk receive risk assessment, counseling, and referral to support based on risk figures and standards of care developed for cisgender individuals. The experiences of TGD individuals navigating inherited cancer syndromes remain largely undocumented in medical literature, posing challenges to the provision of inclusive care by genetics providers. To bridge this knowledge gap, we conducted a cross-sectional qualitative study. Nineteen semi-structured interviews were held with gender diverse adults having hereditary cancer syndromes, family histories of such syndromes, or personal histories of chest cancer. Our study employed thematic analysis using combined inductive and deductive methods to illuminate how hereditary cancer care intersects with participants' gender identities, gender expression, and gender-affirming care experiences. Participants reflected on care experiences that felt affirming or triggered gender dysphoria. Participants also discussed the interplay between risk-reducing mastectomy and top surgery, exploring co-emergent dynamics between cancer risk management and gender expression. Significantly, participants identified actionable strategies for healthcare providers to enhance support for gender diverse patients, including the mindful use of gendered language, collaborative decision-making, and conveying allyship. These findings offer valuable insights into tailoring genetic counseling to meet the unique needs of TGD individuals, advancing the path toward inclusive and appropriate care for LGBTQI+ individuals with hereditary cancer syndromes.