Perspective Of Cancer Patients Research Articles

Exploring the perspectives of cancer patients parenting minor children: A qualitative study on family-centered cancer care experiences

ObjectivesParents with cancer experience not only disease-related burden but also child- and family-related concerns. According to the German guidelines, all professionals working in oncology are responsible for addressing these burdens and needs and for involving the patient’s relatives. This study aims to explore patients’ perspectives on their experiences regarding family-centeredness in cancer care. MethodsWe conducted interviews with 18 cancer patients parenting at least one minor child (< 18). The interviews were audio-recorded, transcribed verbatim and analyzed using qualitative content analysis. ResultsMost parents reported that their healthcare professionals (HCPs) rarely or not routinely discussed family issues. There was a wide range of ways in which HCPs communicated about family issues. Parents often felt unsure about professionals’ responsibilities and many of them expressed a desire for more proactive communication. ConclusionsThe findings suggest that the majority of patients have unmet needs related to comprehensive care as parents. Practice implicationsHCPs need to be sensitized to identify parents facing additional burdens and needs. It is essential that HCPs clarify parents’ preferences regarding the extent of involvement of family issues in cancer care.

Cancer care pathways mapping and dissemination toolkit: lessons learnt from cancer services in NSW, Australia.

Gaps and complexities exist in cancer referral and diagnosis in Australia, leading to delays in cancer treatments. Developing evidence-based referral pathways is important for promoting better and more timely cancer diagnosis and care. Type of program or service: This paper describes a toolkit endorsed by the Cancer Institute NSW as a guide for promoting best practice in localising cancer referral and diagnosis pathways in line with the national Optimal Care Pathways. Use of toolkit: Employing methods in the toolkit yielded an increased understanding of cancer care pathways, strengthened collaboration between tertiary and primary sector stakeholders, and enhanced the project skills of Cancer System Innovation Managers. The toolkit has become a valuable guide for consolidating referral pathways for various cancers in the NSW local health districts and could apply to cancer services in other jurisdictions. The pilot project showed that the toolkit is useful in developing referral pathways and reflects best stakeholder engagement practices. Local evidence should be generated to support systematic change and should include the perspectives of cancer patients and clinicians. NSW local health districts continue to use the toolkit methods to optimise care to improve outcomes for people living with cancer.

Cancer Patient Perspectives on the Meaning of Healing and the Clinician as a Healer.

The experience of living with cancer is marked by suffering and loss, which creates a need for healing. Understanding what healing means to patients and how clinicians can play a role in the healing process is essential to holistic cancer care. The aim of this study was to explore the perspectives of cancer patients on the meaning and experiences of healing and the qualities of a clinician and the clinician-patient relationship that are healing. A qualitative study was conducted using semi-structured interviews with 14 cancer patients. Participants were asked about their illness experience, definition of healing, qualities of a healer, and relationships with clinicians that were healing. Interview transcripts were coded, and qualitative analysis was conducted to identify major themes. Participants defined the nature of healing as comprising aspects of physical, mental, emotional, and spiritual well-being. Participants described healing as alleviating pain and symptoms; promoting mental strength, emotional comfort, and spiritual connection; restoring and adapting to losses; and improving quality of life. The qualities of a clinician that contributed to a healing relationship included listening, empathy and compassion, understanding patients' values and goals, and caring for the patient as a whole person. Participants viewed healing as physical, psychosocial, and spiritual in nature and an important part of their cancer experience with an emphasis on quality of life. Clinicians played an important role beyond treating the cancer by helping in the healing process through their humanistic qualities and holistic approach to patient care.

Catastrophic Health Expenditure (CHE) among Cancer Population in a Middle Income Country with Universal Healthcare Financing.

The study investigated healthcare expenditure from the perspective of cancer patients, to determine the level of Catastrophic Health Expenditure (CHE) and its associated factors. This cross-sectional study was conducted in three Malaysian public hospitals namely Hospital Kuala Lumpur, Hospital Canselor Tuanku Muhriz and the National Cancer Institute using a multi-level sampling technique to recruit 630 respondents from February 2020 to February 2021. CHE was defined as incurring a monthly health expenditure of more than 10% of the total monthly household expenditure. A validated questionnaire was used to collect the relevant data. The CHE level was 54.4%. CHE was higher among patients of Indian ethnicity (P = 0.015), lower level education (P = 0.001), those unemployed (P < 0.001), lower income (P < 0.001), those in poverty (P < 0.001), those staying far from the hospital (P < 0.001), living in rural areas (P = 0.003), small household size (P = 0.029), moderate cancer duration (P = 0.030), received radiotherapy treatment (P < 0.001), had very frequent treatment (P < 0.001), and without a Guarantee Letter (GL) (P < 0.001). The regression analysis identified significant predictors of CHE as lower income aOR 18.63 (CI 5.71-60.78), middle income aOR 4.67 (CI 1.52-14.41), poverty income aOR 4.66 (CI 2.60-8.33), staying far from hospital aOR 2.62 (CI 1.58-4.34), chemotherapy aOR 3.70 (CI 2.01-6.82), radiotherapy aOR 2.99 (CI 1.37-6.57), combination chemo-radiotherapy aOR 4.99 (CI 1.48-16.87), health insurance aOR 3.99 (CI 2.31-6.90), without GL aOR 3.38 (CI 2.06-5.40), and without health financial aids aOR 2.94 (CI 1.24-6.96). CHE is related to various sociodemographic, economic, disease, treatment and presence of health insurance, GL and health financial aids variables in Malaysia.

Jordanian Patients’ Perspectives of the Role of Complementary Medicine in the Treatment of Cancer

Background: In recent years, Jordan has seen a rise in the prevalence of cancer cases. Many Jordanian cancer patients have reported a readiness to try to alleviate their symptoms, and thus improve their quality of life by adopting a blend of traditional, complementary and integrative (TCI) medicines. Currently, hospitals in Jordan offer no or limited complementary medicine (CM) services as part of oncology or palliative cancer care. Purpose: This study examines the perspectives of Jordanian cancer patients regarding the desirability of integrating a range of CM approaches with the conventional treatments offered by hospitals. Methods: In this descriptive study, 253 patients formed a convenient sample and were asked to complete the Questionnaire on Integrating Complementary Medicine in Oncology Treatment. Results: More than 40% of the patients were found to have used CM during chemo or radiotherapy. Different types of herbal medicine were the most used treatments. More than a half of the participants showed willingness to seek advice from healthcare professionals on the use of CM for cancer treatment if it was integrated into their oncology treatment. Participants expected CM to improve their symptoms of pain, nausea and vomiting, as well as changes in appetite. Conclusion: Since there can be some safety issues involved with CM approaches, training should be given to care providers on how to best help their cancer patients based on evidence-based culturally sensitive consultation. Implications for Nursing: More research is needed to be done into the perspectives of healthcare providers and care givers on CM use and its usefulness alongside the conventional medical treatments.

The Europa Uomo Patient Reported Outcome Study 2.0—Prostate Cancer Patient-reported Outcomes to Support Treatment Decision-making

BackgroundTo further strengthen the voice of patients, Europa Uomo initiated the Europa Uomo Patient Reported Outcome Study 2.0 (EUPROMS 2.0) in October 2021. ObjectiveTo collect the self-reported perspective of prostate cancer (PCa) patients on physical and mental well-being after PCa treatment outside a clinical trial setting to inform future fellow patients about the impact of PCa treatment. Design, setting, and participantsEuropa Uomo invited PCa patients to complete a cross-sectional survey including the validated EQ-5D-5L, EORTC-QLQ-C30, and the EPIC-26 questionnaires. Furthermore, the nine-item Shared Decision Making Questionnaire (SDM-Q-9) and diagnostic clinical scenarios were included. Outcome measurements and statistical analysisDescriptive statistics was used to assess the demographic and clinical characteristics and to analyze the patient-reported outcome data. Results and limitationsBetween October 25, 2021 and January 17, 2022, 3571 men from 30 countries completed the EUPROMS 2.0 survey. The median age of respondents was 70 yr (interquartile range 65–75 yr). Half of the respondents underwent one treatment, most often radical prostatectomy. Men who are treated actively experience lower health-related quality of life than men on active surveillance, mainly regarding sexual function, fatigue, and insomnia. Lower urinary incontinence levels were seen for men who underwent radical prostatectomy (single treatment or in combination with other treatments). Of the respondents, 42% indicated that the determination of the prostate-specific antigen (PSA) value was part of a routine blood test; 25% wanted to undergo screening/early detection for PCa, and 20% indicated that the determination of the PSA value had a clinical reason. ConclusionsA large sample of 3571 international patients has contributed patient experience after PCa treatment in the EUPROMS 2.0 study, confirming that treatment for PCa mainly affects urinary incontinence, sexual function, fatigue, and insomnia. Such information can be used to direct toward a better patient-doctor relationship, to offer patients ready access to responsible information and a better understanding of their disease and treatment. Patient summaryThrough the EUPROMS 2.0 survey, Europa Uomo has strengthened the voice of the patient. Such information can be used to inform future prostate cancer (PCa) patients about the impact of PCa treatment and to engage them in informed and shared decision-making.

Perspectives and Knowledge about Fertility Preservation Strategies among Female Cancer Patients in Turkey.

To evaluate the knowledge level and perspectives of female cancer patients regarding fertility preservation techniques before gonadotoxic treatment. Material and Methods. This was a prospective observational survey-based study conducted between 2016 and 2020 in Izmir Economy University Medical Park Hospital. A total of 150 female cancer patients aged 18-42 years were included. The participants completed a 17-item questionnaire, developed by the research team to evaluate their knowledge and perspectives on fertility preservation techniques. The mean age of the patients was 39.5 ± 4.9 years. Only 64.7% of the patients were referred to fertility counseling by a gynecologist, while 72.6% of the patients knew of the risk of infertility after cancer treatment. There was a significant correlation between the health status and cancer stage of the patient (p=0.003). The estimated future chance of becoming pregnant spontaneously or through fertility preservation techniques was significantly higher in patients with a higher education level (p=0.041 or 0.008, respectively). Satisfaction with the counseling process was reported as high or low by 66.7% or 20% of the patients, respectively. The rate of referral of reproductive-age cancer patients to fertility preservation counseling is still not satisfactory. Education level was the only variable significantly associated with a motivation to become pregnant after cancer treatment, either spontaneously or through fertility preservation techniques.

A Thematic Analysis on an Exploration of Concerns of Cancer Patients and their Caregivers in the Context of the COVID-19 Pandemic

Background: COVID-19, a pandemic prevalent for a long time presents a multistep crisis;the first stage is an acute health crisis, followed by a healthcare recovery crisis in the second stage and a socio-economic crisis in an indefinite period. The study explores the challenges and specific concerns among patients diagnosed with cancer and their caregivers during the pandemic. Materials and Method: Qualitative research employs specific research methods such as in-depth interviews, content analysis, observation methods, and life histories or biographies to examine people’s experiences in detail. In the present study, a semi-structured questionnaire was developed and interviews were conductedto understand the experiences of cancer patients andtheir caregivers with health care and their daily challenges during the pandemic. A Non-random sampling method, involving males and females, within the age group of 18 to 65 years, and their primary care providers from the Regional Cancer Centre and other cancer hospitals are followed. Semistructured interview responses were collected from cancer patients and their caregivers., illustrative quotes were summarised and key themes from the interviews were extracted. Results and analysis: 9 Key themes with 20 subthemes were extracted in the content analysis. Difficulty having access to medical care, fear of infection transmission, lack of social support, loss of income source, drastic lifestyle changes, uncertainty about disease cure, and apprehension about the future,which result in cumulative disease burdenhave been frequently reported in the study.Conclusion: The current research is relevant in describing the experiences and perspectives of cancer patients and their caregivers, throwing light on the psychosocial issues and challenges during the pandemic situation, thus emphasizing the need for developing a supportive psychosocial intervention.

Biomarkers in Clinical Trials: From Cancer Researcher and Cancer Patient Perspective

Biomarkers in Clinical Trials: From Cancer Researcher and Cancer Patient Perspective

Unpleasant symptoms of immunotherapy for people with lung cancer: A mixed-method study

BackgroundImmunotherapy has changed the outlook for lung cancer treatment. A closer look at the accompanying symptoms from the patient's perspective is necessary to improve their tolerance to the treatment, which is also the basis for standardized symptom management. ObjectiveTo describe the symptomatic experiences of patients receiving immunotherapy for lung cancer and explore whether symptoms reported during immunotherapy were associated with survival outcomes. DesignExploratory sequential mixed-method study. SettingsPatients were continuously recruited from the oncology day ward of Guangdong Provincial People's Hospital between October 2019 and January 2020. Participants59 patients with advanced lung cancer and receiving immunotherapy (median [IQR] age was 64 [58–69]; 72.9 % pathological stage was IV) were included in the study. MethodsA sequential qualitative interview on symptom experiences was conducted from the perspective of lung cancer patients in immunotherapy. Summative content analysis was used to develop a standardized symptom reporting checklist. Survival outcome follow-ups of each patient were conducted 2 years after the interview. Results47 symptoms were extracted from the 124 interviews of 59 patients, the common symptoms including musculoskeletal pain (52.5 %), itchy skin (45.8 %), fatigue (45.8 %), cough (44.1 %), shortness of breath (32.2 %), lack of appetite (32.2 %), and rashes (32.2 %). The timing, severity, and interference of symptoms were different among patients. The symptoms of shortness of breath, fatigue and chest pain were more common in chemo-immunotherapy, while dry mouth and blurred vision were more frequent with immunotherapy. The symptoms of musculoskeletal pain, shortness of breath, lack of appetite, drowsiness and taste change were more common for those who died two years after the interviews; for those who survived, the symptoms of rash and chill were more common. ConclusionsWe generated a symptom list related to lung cancer immunotherapy from the patients, provided a closer look at symptoms from the patient's perspective, and suggested differences in the presence of symptoms between the group of treatment and survival outcome. This enables clinicians and nurses to better understand and empathize with the patient's experience, so as to truly practice the essence of patient-centered care, and provide a basis for the development of standardized symptom measurement tools in the future. Tweetable abstractAt least 47 unpleasant symptoms were present in immunotherapy from the perspective of lung cancer patients.

Determination of a cost-effectiveness threshold for cancer interventions in Iran.

The estimation of a cost- Effectiveness (CE) threshold from the perspective of those who have experienced a life-threatening disease can provide empirical evidence for health policy makers to make the best allocation decisions on limited resources. The aim of the current study was to empirically determine the CE threshold for cancer interventions from the perspective of cancer patients in Iran. A composite time trade-off (cTTO) task for deriving quality adjusted life-year (QALY) and a double-bounded dichotomous choice (DBDC) approach followed by open-ended question for examining patients' willingness-to-pay were performed. A nationally representative sample of 580 cancer patients was recruited from the largest governmental cancer centers in Iran between June 2021 and January 2022, and data were gathered using face-to-face interviews. The CE threshold was calculated using the nonparametric Turnbull model and parametric interval-censored Weibull regression model. Furthermore, the factors that affect the CE threshold were determined using the parametric model. The estimated CE threshold using the nonparametric Turnbull model and parametric interval-censored Weibull regression model was IRR 440,410,000 (USD 10,485.95) and IRR 595,280,000 (USD 14,173.33) per QALY, respectively. Gender, age, education, income, type of cancer, and current treatment status were significantly associated with the estimated CE threshold. The value of parametric model-based threshold in this study was 1.98 times the Iranian GDP per capita, which was lower than the CE threshold value recommended by the WHO (i.e., 3 times the GDP per capita) for low-and middle-income countries.

Oncologic Care of Breast Cancer Patients with Preexisting Disabilities: Results of a Qualitative Study on Perceived Barriers, Communication Difficulties, and Needs

Up to now, people with disabilities have received little consideration in health care with regard to their individual needs. This study gathers information on the internal perspective of breast cancer patients with a pre-existing disability with regard to needs and barriers in oncological care. For this purpose, qualitative, guideline-based interviews were conducted and analysed using qualitative content analysis. Twenty-three patients with physical disabilities, chronic physical illnesses, sensory disabilities, mental illnesses and/or intellectual disabilities were included. Depending on the type of disability, patients faced different barriers. In order to reduce the barriers experienced by people with disabilities in care, it is necessary to promote cooperation between care providers from different care sectors and to train care providers in dealing with people with disabilities.

Exploring the psychological and religious perspectives of cancer patients and their future financial planning: a Q-methodological approach

BackgroundCancer patients are often hesitant to talk about their mental health, religious beliefs regarding the disease, and financial issues that drain them physically and psychologically. But there is a need to break this taboo to understand the perceptions and behaviours of the patients. Previous studies identified many psychological factors that are bothering cancer patients. However, it still requires exploring new elements affecting their mental and physical health and introducing new coping strategies to address patients’ concerns.MethodsThe current study aims to identify cancer patients’ perceived attitudes towards the severity of illness, understand their fears, tend towards religion to overcome the disease, and future financial planning by using a Q-methodological approach. Data were collected in three steps from January-June 2020, and 51 cancer patients participated in the final stage of Q-sorting.ResultsThe findings of the study are based on the principal component factor analysis that highlighted three essential factors: (1) feelings, (2) religious beliefs about the acceptance of death, and (3) their future personal and financial planning. Further, the analysis shows that the patients differ in their beliefs, causes and support that they received as a coping mechanism.ConclusionThis study explains cancer patients’ psychological discomfort and physical pain but cannot relate it to co-morbidities. Q methodology allows the contextualization of their thoughts and future planning in different sets, like acceptance of death, combating religion’s help, and sharing experiences through various platforms. This study will help health professionals derive new coping strategies for treating patients and financial managers to design insurance policies that help them to share their financial burdens.

A qualitative study of interactions with oncologists among patients with advanced lung cancer.

IntroductionTo support the care of lung cancer patients, oncologists have needed to stay current on treatment advancements and build relationships with a new group of survivors in an era where lung cancer survivorship has been re-defined. The objectives of the study were to (1) understand the perspectives of advanced lung cancer patients whose tumors have oncogenic alterations about their care experiences with their oncologist(s) and (2) describe the perceptions of advanced lung cancer patients about seeking second opinions and navigating care decisions.MethodsIn this qualitative study, patients with advanced lung cancer (n = 25) on targeted therapies were interviewed to discuss their ongoing experience with their oncologists. We used deductive and inductive qualitative approaches in the coding of the data. We organized the data using the self-determination framework.ResultsPatients described both positive and negative aspects of their care as related to autonomy, provider competency, and connectedness. Patients sought second opinions for three primary reasons: expertise, authoritative advice, and access to clinical trial opportunities. When there is disagreement in the treatment plan between the primary oncologist and the specialist, there can be confusion and tension, and patients have to make difficult choices about their path forward.ConclusionsPatients value interactions that support their autonomy, demonstrate the competency of their providers, and foster connectedness. To ensure that patients receive quality and goal-concordant care, developing decision aids and education materials that help patients negotiate recommendations from two providers is an area that deserves further attention.

Understanding the needs and perspectives of ovarian cancer patients when considering PARP inhibitor maintenance therapy: Findings from two online community events

ObjectiveThe online environment is an ideal setting to understand how many women seek, receive, and understand information about cancer treatment. The purpose of this study was to understand women’s needs and information-seeking around Poly ADP ribose polymerase (PARP) inhibitors, an oral medication commonly prescribed as maintenance therapy at the conclusion of primary chemotherapy for ovarian cancer. MethodsWe held online discussion events with two social media communities, #gyncsm social media on Twitter and the Smart Patients ovarian cancer community, in November 2020, to sample ovarian cancer patient perceptions of, and information seeking about PARP inhibitors. Focused questions were presented to both communities, with participants able to answer and elaborate upon these questions, as well as to add their own comments or topics. Qualitative content analysis was performed on the transcripts from the two online events. ResultsA total of 254 unique tweets and 71 messages were generated from the Twitter and Smart Patients conversations, respectively. The majority of the content from these two events could be categorized into five major themes: (1) concerns about side effects, (2) expectations of benefit, (3) desire for more information regarding clinical trials, ) (4) desire to better understand the relationship between mutation status and PARP inhibitor effectiveness, and (5) financial toxicity. Misinformation was rarely identified. ConclusionsWomen with ovarian cancer who are engaged in online patient communities have numerous educational needs regarding PARP inhibitors. Given the complexity of clinical research on PARP inhibitors, patients would likely benefit from patient-centered educational tools.

Perspectives of cancer patients during the COVID-19 outbreak in Israel: The long-term implications on support and well-being in an exploratory qualitative study.

ObjectivesThe COVID‐19 pandemic's ongoing effects and long‐term implications for the mental and social state of cancer patients are not yet fully known. The current study examined cancer patients' feelings about the pandemic's long‐term impact on daily life 1 year after its outbreak in Israel and after the patient's vaccination against the virus.MethodsTen in‐depth semi‐structured interviews were conducted with cancer patients between February and April 2021.Results and ConclusionsFindings indicated four main themes: (1) managing medical care and support from the medical staff, (2) the effect of the pandemic on social interactions; (3) the impact of the pandemic on family and social support and (4) the patients' psychological well‐being. Despite the patients being vaccinated, the full impact of the pandemic on cancer patients' mental and social states is still fully apparent. The findings reflect the need to assess and monitor the patients' mental state and social and medical needs during this complex time and the importance of developing external support networks.

Cessation experiences and quitting perspectives of Jordanian cancer patients who smoke

ObjectivesTo describe quitting experiences of cancer patients in a Cancer Center in Jordan; to study patients’ perceptions regarding the process of smoking cessation; and to provide insights about patients in this difficult setting in order to inform oncology practitioners with regards to how improve perceptions and skills related to quitting. MethodsAn Arabic cross-sectional questionnaire was developed to evaluate smoking and quitting behaviors in the context of cancer. The tool used as its framework the Theoretical Domains Framework to capture quitting perceptions of cancer patients who smoke, as well as social, environmental, and system-level factors that influence quitting. Eligible patients who were treated at the Center (both in-patient and out-patient settings) and who were current smokers or who smoked up to the time of cancer diagnosis were eligible. Patients were interviewed between July, 2018 and January 2020 using two versions of the questionnaire: an ‘ex-smokers’ version, and a ‘current smokers’ version. ResultsOnly a third of subjects (104/350) had been smoke-free for at least 30 days. Both smokers and ex-smokers generally felt that quitting was important, but mean importance and confidence scores (out of 10) were significantly lower in current smokers (8.2 versus 9.1, p-value=0.002; 6.4 versus 8.7, p-value=0.000). Roughly 31% of subjects believed smoking harms were exaggerated and that smoking was not an addiction. About 62% of subjects agreed quitting required skills, and 78.5% felt the steps to quit were clear, but across several listed strategies for quitting, use of these was limited (even in ex-smokers). Among current smokers, roughly a third exhibited forms of cessation fatigue. ConclusionJordanian cancer patients who smoke present with limited knowledge about the quitting process. Even when some success is observed, low rates of utilization of specific quitting strategies were observed, highlighting the need for better counseling about quitting.

Cisplatin-associated ototoxicity: perspectives from a single institution cervical cancer cohort and implications for developing a locally responsive monitoring programme in a public healthcare setting

BackgroundOtotoxicity monitoring is uncommon in South Africa, despite the increased use of ototoxic medication to manage the burden of disease in the country. The successful implementation of such a protocol requires cognisance of contextual realities and multiple dimensions for consideration from both patients and service providers. As part of an ongoing cohort study on cisplatin-associated ototoxicity and efforts to better inform the implementation of such programmes, the perspectives of cervical cancer patients and healthcare workers towards ototoxicity monitoring were assessed.MethodsThis concurrent-triangulation mixed-methods study was conducted at a tertiary hospital in South Africa. Self-reported questionnaires from patients (n = 80) and healthcare personnel comprising clinicians, oncology nurses, pharmacists, and radiotherapists (n = 32), results of audiological evaluations, researcher field notes, and estimated patient and service provider costs contributed to data for this study. Data analysis included descriptive statistics, comparison of test characteristics and deductive thematic analysis.ResultsThe ototoxicity monitoring programme was positively received by the participants, with 90.6% of healthcare personnel and 89% of patients reporting it to be beneficial. The clinicians (76.6%) were identified as the main providers of information on the effects of chemotherapy medication and made the necessary referrals for audiological evaluation. The approximate cost of setting up such a programme included purchase of equipment (US56 700) and the appointment of an audiologist (US 26 250). The approximate costs to patients included transport costs (US$ 38) and the loss of income for the day (US 60), calculated at the minimum wage per hour, if employed. Creative appointment scheduling, easy facility access and detailed locally comprehensible couselling improved patient compliance to the programme. Whilst the sequential use of American Speech-Language-Hearing Association (ASHA) and National Cancer Institute Common Terminology Criteria for Adverse Events (NCI-CTCAE) criteria aided in an evidence-informed approach to aural rehabilitation, DPOAEs and speech discrimination displayed low sensitivity (range 1.45% – 22.39%) but high specificity (range 77.78% – 100%) when identifying ototoxic change.ConclusionThis novel study, through a ‘real-world’ experience, has revealed that an ototoxicity monitoring programme is feasible in South Africa, through meaningful engagements with- and considerations from- patients and service providers regarding planning, delineation of responsibilities and cost implications. The findings can potentially serve as a roadmap for other limited resource environments.

Abstract 5276: COVID-19 and breast cancer care in Ireland: A qualitative study to explore the perspective of breast cancer patients on their health and health care

Abstract COVID-19 has heightened social inequalities, particularly for those with non-communicable diseases (NCDs), such as cancer, and health services for NCDs have been significantly disrupted. Breast cancer (BC) is the most common cancer for women in Ireland, and the impact of the pandemic on BC care needs to be established. The purpose of this study is to explore the health care experience of women with BC during the pandemic and to investigate whether these experiences vary based on social determinants of health (SDH). The study included semi-structured qualitative interviews with 37 women who had previously participated in a related quantitative study. Individuals were selected through stratified purposive sampling to ensure data was available on information-rich cases based on SDH. Interviews were conducted in early 2021 and thematic analysis was conducted using NVivo software. Three major themes, with additional subthemes, emerged from analysis: breast cancer services; breast cancer support and communication; and mental well-being. There were differences in women’s experiences within the themes that were dependent upon the SDH, including socio-economic status (SES), region, and time since diagnosis. For example, most women experienced disrupted BC services throughout the pandemic, but disruptions were more severe for women of lower SES. Table 1 provides quotation examples as evidence for these different experiences. The pandemic has impacted women with BC considerably, but the impact differed by social inequalities and time of diagnosis. This study highlights areas for improvement in the context of BC care in Ireland and the findings will inform further policy and practice. Table 1. General experiences and variation of experience based on SDH for women receiving BC services during COVID-19 Diagnostic/screening services Active treatment services Post-treatment services General experiences “I felt a lump… so I went to my own GP. She saw me and she faxed a letter straight into [cancer centre]. Within a week, I was in [cancer centre] having seen the doctors and then followed on with biopsies and mammograms.” “Well, it was a stressful period of time because I felt it was growing. And I couldn''t do anything about it. And the hospitals weren''t really taking patients… But eventually I got called again into the… clinic. I had my operation there.” “…the safety net of going in and being told this is all normal, you’re okay. And yeah, that’s gone, even though I know I can pick up the phone if I want to. But it’s not the same.” Experience based on SDH “What happened was… I got an appointment sent out for October. And I phoned them and they said to me look, there’s probably other women that met the criteria, that needed the mammogram before me.” (low SES) “I’d wait for three months or such time until COVID was over… before he would do anything. And I, at that time, I just said “no, I can’t wait that long, that’s too long.” (low SES) “I haven''t had an MRI in about a year and I meant to be getting them every six months. So then when I did, [the lump] just showed up.” (low SES) Citation Format: Charlotte L. Myers, Catherine Waldron, Kathleen Bennett, Caitriona Cahir. COVID-19 and breast cancer care in Ireland: A qualitative study to explore the perspective of breast cancer patients on their health and health care [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2022; 2022 Apr 8-13. Philadelphia (PA): AACR; Cancer Res 2022;82(12_Suppl):Abstract nr 5276.

Clinical staff and cancer patient perspectives on the challenges of out-of-pocket expenses and navigation of cancer treatment costs.

e18823 Background: Cancer care delivery has been described as a “system in crisis” in part due to lack of affordable care. In 2019, out-of-pocket (OOP) costs alone were estimated to be over $16 billion in the US. Transparency and early conversations about expected OOP costs may prevent financial toxicity and improve patient-centered care. Methods: We conducted a qualitative study to explore perceptions of OOP costs and technology use to promote cost transparency. Semi-structured, in-depth interviews were held with various healthcare professionals (HCPs) – including oncologists, nurse patient navigators, financial counselors, social workers, and pharmacists – and patients enrolled in fee-for-service Medicare receiving cancer drug therapy at a large, urban cancer center or affiliated community practice. HCPs were asked about common issues patients have regarding cancer treatment costs and how they search for patient financing opportunities. Patients were asked about difficulty with treatment costs not covered by insurance, conversations with care team members about how much they should expect to pay for treatment, and how they learned about their OOP costs. All interviews were led by a health economist/policy expert and a qualitative research assistant between October 2020 and June 2021. Results: We interviewed 13 HCPs and 3 patients. HCPs averaged 16 years of experience working with cancer patients (range: 1-39 years). Patients were ≥50 years old and had at least a high school degree or the equivalent. We identified at least 10 roles that may be involved in discussing or identifying resources to lower expected OOP costs (i.e., cost navigation) for cancer patients receiving systemic infused or oral treatments. OOP treatment costs were identified as a top concern for patients and HCPs, echoing known challenges; however, how OOP costs are determined and navigated varies tremendously per patient. Emergent themes in the data include: lack of transparency in OOP costs and the navigation process, a need for cost conversations at the start of treatment, challenges with obtaining financial assistance, and numerous barriers impeding cost navigation. There are opportunities for technology to streamline support for navigation tasks. Conclusions: Helping patients understand and seek assistance to cover high OOP costs is critical for many patients with high-priced cancer treatments. However, it is a complex process that often requires engagement from multiple care team members who may encounter barriers to providing this help. Patients who cannot afford their OOP costs may benefit greatly from close partnership with an HCP who assists with navigation throughout the process. Technology is needed to support a variety of backend tasks to help HCPs determine expected OOP costs and maintain the focus of the oncologist’s role – to provide the patient with the best possible treatment.