Comorbidity, treatment toxicity and satisfaction with cancer care: an international cross-sectional study based on the EORTC PATSAT-C33 and OUT-PATSAT7

ObjectivesResearch has highlighted poorer experiences of cancer care amongst ethnically minoritised groups. Whilst significant strides have been made in understanding cancer experiences of minoritised adults, there exists a knowledge gap in understanding how cancer impacts on minoritised young people, many of whom are faced with complex developmental challenges. This study aimed to understand the experiences of cancer and cancer care amongst minoritised youths in the UK.MethodNine young people aged between 16 to 24 with diverse types of cancer diagnoses, who self-identified as ethnically minoritised shared their cancer experiences in semi-structured interviews. Participants’ stories were analysed using thematic narrative analysis.ResultsFindings identified three core narratives reflecting participants’ emotional journey through cancer, their cultural stories and cancer care experiences, encompassing 12 themes. Their journeys shared common themes of: Feeling Dismissed; Shock and Turmoil; Grieving Self and Changes; Isolated and Helpless; Adapting in Adversity; and “Changed for the better”. Cultural narratives revealed diverging views towards family support, while cultural influences on treatment options and feelings of being othered also complicated their cancer experiences. Overall, participants shared positive experiences of cancer care. Despite a protracted journey to diagnosis, personalised, accessible care and experiences of feeling seen were valued.ConclusionThe findings shed light on cultural influences towards minoritised young people’s experiences of cancer and care. Implications around strengthening cultural sensitivity and visibility were highlighted. Future research may be helpful to hone into minoritised cancer experiences at different stages during one’s cancer journey including survivorship across more diverse socio-cultural contexts and how systemic factors may impact on the provision of culturally competent care.

Purpose Up to 1 million lesbian, gay, bisexual, and transgender (i.e., sexual and gender minority, SGM) individuals in the United States have histories of cancer. This medically underserved population is diverse, with complex sexualities and gender identities, and distinct health concerns. SGM persons experience disproportionate risks for, and rates of, anal, breast, cervical, colorectal, endometrial, lung, and prostate cancers, in addition to cancers affecting transgender persons who have undergone sex-reassignment. SGM individuals are linked by shared experiences of stigmatization as a minority population for which little cancer research has been conducted. SGM cancer patients frequently report reluctance to seek healthcare, have poorer outcomes following diagnosis, engage in elevated risk behaviors (i.e. smoking and alcohol use) even after cancer diagnosis, have difficulty making emotional adjustment to illness, and experience higher rates of psychological distress. They report less satisfaction with cancer care, deficiencies in patient-centeredness and shared decision-making, gaps in care, and social isolation. Minority stress resulting from experiences of anti-SGM sentiment and discrimination affects cancer patients and their informal cancer caregivers. Our paper presents findings from a pilot study to identify gaps and opportunities to improve cancer care for SGM patients and caregivers at the University of New Mexico Comprehensive Cancer Center. Methods Between June 2020 and July 2021, we used a multi-methods research design informed by ecological theory to collect qualitative and quantitative data regarding cancer patient and caregiver quality of life (QoL) and experiences of cancer and survivorship care. We used PROMIS measures distributed via REDCap to assess QoL (i.e., fatigue, pain interference, pain intensity, anxiety, depression, emotional support, social isolation, and companionship), and conducted in-depth semi-structured interviews. We recruited 10 SGM cancer patients and 8 heterosexual, cisgender (H/C) patient matches, and their self-identified informal cancer caregivers (n=36, dyad total n=18). Interviews ranged from 1 to 2 hours, were audio-recorded and transcribed for analysis. The study was approved by the University of New Mexico Human Research Protections Office Institutional Review Board. Results Results of the PROMIS QoL assessments indicated that SGM patients reported greater anxiety [mean (SD) = 54.5 (8.8)] and depression [mean (SD) = 49.3 (4.8)] than H/C patients [mean (SD)=51.6 (7.5) and 45.4 (6.8) respectively], while heterosexual, cisgender (H/C) patients reported higher fatigue [mean (SD) =52.04 (8.18)] and stronger pain intensity than SGM patients [mean (SD)=48.3 (9.1) and 37.8 (9.1) respectively]. SGM patients reported higher levels of social isolation [mean (SD) = 48.3 (7.3) vs. 42.1 (7.4) for H/C patients, whereas H/C patients reported more emotional support (mean (SD) =57.5 (9.3) vs. 53.0 (6.9)] and companionship [mean (SD) = 55.2 (8.6) vs. 51.5 (11.0)]. SGM and H/C differences in caregiver QoL were most notable with regards to higher levels of fatigue [mean (SD) = 47.1 (6.0) for SGM, and 42.4 (11.5) for H/C] and companionship [mean (SD) = 55.3 (6.0) for SGM, and 50.9 (5.5) for H/C]. Qualitative interviews supported our quantitative results. SGM patients and caregivers articulated experiences of anti-SGM stigma and discrimination contributing to minority stress that influenced their initial cancer care encounters. SGM dyads had more trepidation and/or medical mistrust during initial cancer care encounters when compared to H/C patients and caregivers. SGM patients questioned care that was not culturally responsive to SGM preferences, while H/C patients were more apt to identify gaps in communication and perceived lack of clarity regarding cancer care delivery. Although SGM patients experienced high satisfaction with their cancer care once they developed trust with their providers, they discussed desires to have more direct conversations with their oncologists about their sexual orientation and gender identities and sexual health. All patients and providers in the study (SGM and H/C) appreciated their oncology care teams. All patients and caregivers relied on social networks comprised of friends and family, although SGM patients and caregivers had smaller social networks and relied less on biological family, and single SGM individuals experienced challenges accessing cancer care and struggled with social isolation. We discovered too, that all caregivers, regardless of Sexual Orientation and Gender Identity (SOGI), perceived a lack of support and information pertaining to their loved one’s treatment, side effects and best way to provide care. Conclusions This study demonstrates that prior stigmatizing experiences contribute to minority stress and medical mistrust for SGM cancer patients and their informal caregivers across the cancer care experience. Findings point to specific gaps in SGM cancer patient care, including lack of conversation about patient SOGI, inadequate staff and oncology provider SGM specific knowledge and cultural competence/cultural humility training, and insufficient patient supports for those who lack social support during cancer care treatment. Further, this study reveals inadequacies in SGM specific support, and overall support services for informal cancer caregivers. Additional research is required to develop targeted interventions to address minority stress and clinic environment concerns to improve cancer care for SGM patients. Importantly, while there were differences between SGM and H/C experiences of cancer treatment, significant similarities also emerged. Caregiver expressed consensus about the current lack of support and guidance for informal caregivers of cancer patients. Future work should focus on providing caregiver-specific resources in the clinic setting and facilitating support groups for caregivers to network with one another, as well as for tailoring SGM specific caregiver support services. Our findings highlight areas for improving cancer care for the SGM community, as well as a broader population of patients and caregivers.

Background: Using insights gained from the National Health Service in England, an alliance of organizations committed to cancer control in Australia conducted a large-scale survey aimed at better understanding the quality of cancer care. Aims: To understand sources of variation in the quality of patients' experiences of cancer care; and to identify patients with the largest potential to benefit from strategic quality improvement initiatives. Methods: The Victorian Comprehensive Cancer Centre commissioned a cross-sectional survey of adult cancer patients treated as day cases or inpatients at five partner health services in 2015. Data comprised responses to the National Health Service (NHS) Cancer Patient Experiences Survey, ICD-10-AM codes and postcodes. Some survey items were modified to suit the Australian population based on advice from local experts and consumers. Aspects of care covered by the survey included: timeliness and experience of diagnosis; treatment decision-making; provision of support information; experience of operations, hospital doctors, ward nurses, hospital care and home care and support; experience of care as a day or outpatient; follow-up care with general practitioners; and overall cancer care. Consistent with NHS methodology, cancer care questions were recoded to binary variables reflecting more or less positive experiences and cancer type was defined based on ICD-10-AM codes. Postcodes were converted to an index of relative socioeconomic advantage and disadvantage using an Australian standard. Proportions were used to summarize the characteristics of patients who had more and less positive experiences of cancer care; then, logistic regression was used to model the probability of having less positive experiences. Age, gender, language spoken at home, socioeconomic group and cancer type were included in the models. Univariate models were used to calculate unadjusted odds ratios. Multivariate models were used to calculate the odds ratios of less positive experiences adjusting for patient characteristics and cancer type. Results: A total of 2526 patients completed the survey (response rate: 41%). As a general rule, and consistent with findings from the NHS, a substantial majority of patients (80% or more) reported positively on many aspects of care. Even so, more often than not aggregated data obscured striking disparities between patients diagnosed with different types of cancers. Overall, patients diagnosed with pancreatic cancer fared the worst; more than half reported less favorably on multiple aspects of care. Variation in perceptions of care was not as pronounced for different age groups, genders and language groups and we identified little variation between socioeconomic groups. Conclusion: At the very least, cancer system performance should be appraised by cancer type. Aggregation may conceal gross inequities and thwart attempts to identify those patients most likely to benefit from targeted service improvements.

BackgroundDisparities in cancer outcomes amongst Indigenous Australians reflect a pattern of reduced access to and engagement with health services. A growing emphasis on patient-centred care has increased efforts to measure patient experiences, but it is unclear whether existing approaches: a) assess the most critical aspects of care that shape the experiences of Indigenous people with cancer; and b) facilitate the engagement and participation of Indigenous people with the measurement of care experiences.MethodsTwo rounds of semi-structured interviews and focus groups were used to elicit stakeholders’ views on priorities for measuring the cancer care experiences of Indigenous cancer patients and on the acceptability of various methods for capturing such information. Participants included Indigenous people affected by cancer (n = 17), health professionals (n = 28) and individuals in both groups (n = 7). Recruitment occurred through a national web-based network and through four cancer services in urban and regional areas in three jurisdictions across Australia.ResultsSeveral aspects of cancer care were identified as critical in shaping Indigenous patients’ experiences. Key themes included: feeling safe in the system; importance of Indigenous staff; barriers to care; the role of family and friends; effective communication and education; and coordination of care and transition between services. Those participants affected by carers’ wellbeing and palliative care strongly advocated for the importance of these topics. Participants expressed support for a face-to-face interview with a trusted person as the most appropriate means of collecting cancer care experience information.ConclusionsWhile existing experience measurement tools would partially capture some important aspects of care, other critical areas would likely be missed. Appropriate tools and approaches, developed by and with Indigenous people, are urgently needed to determine the extent to which health services are meeting the needs of Indigenous people with cancer, and to identify areas for action to improve these services.

Knowledge, Attitudes, and Beliefs of Pediatric Health Care Workers: Understanding the Response to COVID-19.

Background Patients’ economic status and level of health literacy may influence their experiences with healthcare services. However, few studies have examined how these factors shape inequalities in patient-reported experiences measures (PREMs), particularly in cancer care. Thus, we investigated whether experiences of cancer care differed according to patients’ economic status and level of health literacy. Methods We used data from 3,220 adult patients diagnosed with cancer collected by the Swiss Cancer Patient Experiences (SCAPE) study in eight Swiss hospitals from September 2021 to February 2022. Logistic regressions were used to investigate the association between patients’ economic status and health literacy and 30 different outcomes, in separate models for each outcome. The outcomes covered eight different areas of cancer care experiences. Models were adjusted for patients’ age, gender, education level and self-rated health. Since hospitals were located in two different linguistic regions of Switzerland, we tested interaction effects between the regions and economic status and health literacy. Results In the sample, 30.6% of patients experienced economic hardship and 25.7% had a low health literacy. Patients with low economic status and low health literacy had worse experiences of cancer care for 21 outcomes and 24 outcomes, respectively, compared to patients reporting higher economic status and higher health literacy. No differences were found between linguistic regions in the effects of these two predictors. Discussion: Our study showed that economic and health literacy factors generated inequalities in patients’ experiences of cancer care: patients with lower economic status and health literacy were negatively affected in their cancer care experiences. Hence, disadvantaged patients may require specific attention in order to enhance their experiences with healthcare services, and promote a more equal treatment of patients in cancer care. Key messages • Few studies have investigated inequalities in patients’ experiences with cancer care, while factors such as economic status and health literacy may affect care experiences. • Patients who face economic hardship and with low health literacy showed a worse cancer care experience. These disadvantaged patients may require specific attention to improve their care experience.

Clinical research has established exercise as a safe and effective intervention to counteract the adverse physical and psychological effects of cancer and its treatment. This article summarises the position of the Clinical Oncology Society of Australia (COSA) on the role of exercise in cancer care, taking into account the strengths and limitations of the evidence base. It provides guidance for all health professionals involved in the care of people with cancer about integrating exercise into routine cancer care. Main recommendations: COSA calls for: exercise to be embedded as part of standard practice in cancer care and to be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment; all members of the multidisciplinary cancer team to promote physical activity and recommend that people with cancer adhere to exercise guidelines; and best practice cancer care to include referral to an accredited exercise physiologist or physiotherapist with experience in cancer care. Changes in management as a result of the guideline: COSA encourages all health professionals involved in the care of people with cancer to: discuss the role of exercise in cancer recovery; recommend their patients adhere to exercise guidelines (avoid inactivity and progress towards at least 150 minutes of moderate intensity aerobic exercise and two to three moderate intensity resistance exercise sessions each week); and refer their patients to a health professional who specialises in the prescription and delivery of exercise (ie, accredited exercise physiologist or physiotherapist with experience in cancer care).

BackgroundThis paper will present the preliminary findings of research into gender and sexuality diverse (GSD) women’s experiences of cancer and cancer care, as part of a broader ARC funded project...

Background: Global fear surrounding a cancer diagnosis persists. Recent advances in the medical diagnosis and treatment of cancer have influenced cancer survival rates. The quality of health care service to attain and sustain survival is receiving research attention. Patients’ experience of cancer care is one of the important evaluation attributes of quality health care. Aim: The aim was to reveal patients’ and caregivers’ insights as well as healthcare professionals views regarding patients’ cancer care experience in Lesotho. Setting: The study was undertaken at Senkatana Center of Excellence Oncology Clinic in Lesotho. Methods: A qualitative study used the focus groups method for data collection and content analysis for data analysis. Results: The study had revealed that the patients’ cancer care journey is challenging. The journey is characterised by unsatisfactory quality of health care service in health centres, the slow referral process, and limited patients’ knowledge constraining smooth care process. Moreover, financial challenges and inefficient support services were found to affect the quality of health care. Conclusion: The role played by the human element in the delivery of quality cancer care has been highlighted. It is recommended that comprehensive cancer training for healthcare workers in the country be provided. Furthermore, cancer services should be distributed across various districts in the country in order to minimise challenges facing patients. Contribution: The study has identified the cancer care service gap from primary care level, oncology centre and in the process of the foreign referral of the patients.

EP06.01-003 Impact of COVID-19 on Lung Cancer Patients; The Patients’ Perspective

Oncology programs across Canada are reaching capacity as more Canadians are diagnosed with and treated for cancer each year. There is an increasing need to share care with family doctors, however it is unclear how this type of care impacts patient experiences, particularly while receiving active treatment. Retrospective data from the 2021 Ambulatory Oncology Patient Satisfaction Survey (AOPSS) in Alberta, Canada was used in this study. A unique question on the Alberta survey asks patients about their family doctor’s involvement during their cancer care. Patient satisfaction across the six domains of person-centred care on the AOPSS was analyzed based on how involved a patient’s family doctor was. Compared to patients who indicated their family doctor was “Not involved”, patients with “Very involved” family doctors had significantly higher satisfaction scores in all six domains of care. The three domains which showed the largest positive impact of family doctor involvement were: Coordination & Integration of Care, Emotional Concerns, and Information, Communication & Education. The results demonstrate that involving family doctors in cancer care can be beneficial for patients. Based on the observed satisfaction increases in this study, shared care models may be preferred by many patients. These models of care can also help alleviate strain and capacity issues within cancer programs. The results could be used to support recommendations for cancer care teams to regularly involve and communicate with family doctors, to ensure that patients receive comprehensive and tailored care from all their health care providers.

Stigma May Exacerbate Disproportionately Low Guideline-Concordant Treatment Rates for Patients With Advanced-Stage Lung Cancer in the United States

Purpose: Research in Canada and the United States indicates that minority gender and sexuality status are consistently associated with health disparities and poor health outcomes, including cancer health. This article investigates experiences of cancer health and care, and access to knowledge for trans* and gender nonconforming people diagnosed with and treated for breast and/or gynecologic cancer. Our study contributes new understandings about gender minority populations that will advance knowledge concerning the provision of culturally appropriate care. This is the first study we are aware of that focuses on trans* and gender nonconforming peoples' experiences of cancer care and treatment, support networks, and access to and mobilization of knowledge.Methods: This article analyzes trans* and gender nonconforming patient interviews from the Cancer's Margins project (www.lgbtcancer.ca): Canada's first nationally-funded project that investigates the complex intersections of sexual and/or gender marginality, cancer knowledge, treatment experiences, and modes of the organization of support networks.Results: Our analysis documents how different bodies of knowledge relative to cancer treatment and gendered embodiment are understood, accessed, and mobilized by trans* and gender nonconforming patients. Findings reported here suggest that one's knowledge of a felt sense of gender is closely interwoven with knowledge concerning cancer treatment practices; a dynamic which organizes knowledge mobilities in cancer treatment.Conclusions: The findings support the assertion that cisgender models concerning changes to the body that occur as a result of biomedical treatment for breast and/or gynecologic cancer are wholly inadequate in order to account for trans* and gender nonconforming peoples' experiences of cancer treatments, and access to and mobilization of related knowledge.

Navigating the health service network: helping cancer survivors find what they need.

Cancer does not occur in isolation of people’s other chronic issues. Fifty-eight percent of patients with cancer have at least one other chronic or comorbid condition1; thus, cancer is only one of the diagnoses and treatments they have to deal with. Although patients with cancer often experience issues with long-term functional, psychological, and physical adverse effects from cancer treatment that negatively affect their quality of life,2,3 it is important to remember that chronic illnesses also add to patients’ cancer-related issues.4,5 In order to ensure quality patient outcomes, care needs to be continuous, consistent, and unique to each patient’s healthcare needs including existing comorbid conditions.6 This means that care coordination between oncologists and primary care providers (PCPs) who manage the existing chronic conditions is essential for comprehensive cancer care. Coordination of care is critical in ensuring that all of the healthcare needs of the patient are met including ensuring that all chronic conditions are under control during cancer treatment.7 Currently, care for patients with cancer is fragmented—siloed with very little interaction between the oncologist and PCP.8–10 The lack of care coordination increases the risk for poor outcomes and limits the patient’s quality of life.1 Lack of care coordination can lead to inadequate care as the care becomes fixated on the cancer while other health issues go unattended.11,12 This lack of coordination can also lead to fragmented care, polypharmacy, adverse drug reactions, toxicity, unplanned hospitalizations, uncontrolled chronic illnesses,13 and higher healthcare costs. With increasing survival rates, new models of care, and longer life, the role of the PCP becomes even more important and should be integrated into the cancer care trajectory from the point of diagnosis forward. Patients trust their PCP, and they can provide valuable support during diagnosis, selecting of treatment options, treatment phase, stability, recurrence, palliative care, and end-of-life care.1 Primary care providers have important roles during these phases such as managing comorbid conditions, managing depression, establishing do-not-resuscitate status, and discussing/referring patients to hospice. Having the PCP involved throughout the entire care trajectory allows them to be involved in care and better understand the patient’s needs.1 About 20% of survivors report they did not see a PCP in the second year following their cancer diagnosis.1 Survivors who report having both an oncologist and PCP involved in their care perceived higher quality of their care.1 Improved outcomes and higher quality of care occur when both PCP and oncology specialist are involved in the care.1 Guidelines need to be developed that consider both the treatment of the comorbidities and the cancer simultaneously. Such guidelines could assist providers (oncologists and PCPs) in understanding when cancer treatment guidelines take precedence over other chronic illnesses and vice versa. Currently, most treatment guidelines exist within the silo of the specialty in which they were developed and thus become problematic when they contradict each other and cause confusion for the patient.14,15 A standard model of care coordination during and after cancer treatment for patients with comorbidities is needed. There is little research on best models of care, or agreement on the roles of each type of provider. What is the best model for comanaging the patient with cancer and a preexisting comorbidity? Is formalized care coordination cost-effective? Does coordinated care result in improved patient care metrics, such as quality of life, patient satisfaction, and outcomes?4 Solutions need to be developed that address the existing challenges and barriers and prevent us from coordination of care at the provider level. Barriers include knowledge and skills (patients and providers), communication (between providers and between patients and providers), and financial cost/resources.16 In order to address each of the barriers and ensure continuity of care, many research questions need to be asked and answered. These include the following: (1) What is the ideal shared care model between oncology and primary care? What would it look like? (2) How do we ensure communication and coordination between providers about their roles starting at the point of diagnosis? How do we include the PCP as a part of the cancer care team? (3) How best can we utilize the electronic health record for this comprehensive patient care? (4) How can cancer care plans be shared with primary care? (5) How do we provide clarity regarding the role each provider plays to the patients so they understand whom to contact about various issues and so that patients understand their preferences are considered? It is important that nurses take the lead in trying to improve the care coordination between primary care and oncology providers. Only then can we have patient-centered cancer care.