Exploring associations between household material hardship, parent/caregiver health literacy, and family-reported experience of advanced childhood cancer care.

The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing+other). Associations between HMH and parent distress measured by the State-Trait Anxiety Inventory-State and the 10-item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders. Among 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing+other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non-White race, Spanish-speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid-only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7-14.7]) and depression (MD, 4.1 [95% CI, 1.7-6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8-18.5]; depression: MD, 4.9 [95% CI, 1.3-8.6]; housing+other HMH: anxiety: MD, 12.0 [95% CI, 5.2-18.9]; depression: MD, 4.8 [95% CI, 1.8-7.8]). HMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress. In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association. Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing.

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.

Based on previous reports of disparities in financial burden following a cancer diagnosis, this study aims to characterize mechanisms of disparities experienced by caregivers of children with cancer, including the impact of work flexibility and social support. Cross-sectional survey (in English or Spanish) of caregivers of children with cancer that assessed household material hardship (HMH), financial toxicity, and income change. Of 156 caregivers surveyed, 32% were Hispanic and 32% were low income. Hispanic caregivers were more likely to report HMH and financial toxicity compared to non-Hispanic White and Asian (HMH: 57% vs. 21% vs. 19%, p<.001; financial toxicity: 73% vs. 52% vs. 53%, p=.07). Low- and middle-income caregivers were more likely to experience HMH and financial toxicity compared to high-income caregivers (HMH: 68% low vs. 38% middle vs. 8.7% high, p<.001; financial toxicity: 81% vs. 68% vs. 44%, p<.001). All income categories demonstrated significant increases in HMH 1year after diagnosis. Seventeen percent reported more than 40% income loss, more of whom were low income than high income (27% vs. 12%, p=.20). Work flexibility and social support were associated with income and financial toxicity. HMH, financial toxicity, and income loss are prevalent after a child's cancer diagnosis, suggesting that screening should be incorporated into routine care. This financial burden disproportionately affects low-income and Hispanic caregivers. Further research is needed to elucidate the roles of work flexibility and social support, how safety net services are utilized by families, and how best to support families with HMH.

Whilst there is a relationship between health literacy and health outcomes, the importance of social and personal demographic characteristics remains understudied., Identifying the factors responsible for creating health literacy challenges would help ensure that responses are tailored to individual or community needs. This survey included questions from five domains from the Health Literacy Questionnaire. Descriptive analyses and hierarchical regression were used to explore the relationship between the demographic characteristics and health literacy. Qualitative questions were subjected to thematic analysis, to identify the current barriers and proposed solutions. A total of 255 participants completed the survey. Demographic characteristics that significantly predicted lower Health Literacy Questionnaire scores were having one or more chronic health conditions and living in an area of more socioeconomic disadvantage. Participants found 'navigating the health care system' the most difficult of the five elements measured. A total of 276 individual barriers to health literacy were identified and 162 solutions proposed. This study provides an overview of our sample's health literacy and how their social demographic characteristics may predict their health literacy challenges. Findings from this study can be used to develop targeted interventions to respond to specific health literacy challenges identified within this population. SO WHAT?: Distinct from other research, whereby solutions are proposed by researchers, the participants in this study were encouraged to share their health literacy challenges and outline potential solutions to address these in their local context.

Purpose:Clinical trial (ClTr) participation is critical to high-quality pediatric oncology care, but significant sociodemographic disparities in trial enrollment exist. Identifying modifiable barriers to participation such as household material hardship (HMH) and limited health literacy (HL), is essential to improving ClTr access. We compared differences in caregiver-reported barriers to pediatric oncology ClTr participation across socioeconomic status (SES) and racial and ethnic groups through a nationwide anonymous online survey of caregivers of children with cancer. We also explored associations between caregiver HL, HMH, and barriers to trial participation.Methods:English- and/or Spanish-speaking caregivers of children diagnosed with cancer in the last 5 years completed the Research Participation Survey – Caregiver (RPS-C) to assess barriers to ClTr participation, the validated Health Literacy Survey-12 (HLS19-Q12) health literacy assessment, and the WellRx questionnaire measuring HMH.Results:Of 59 participants, 64% were socioeconomically under-resourced, 52.5% identified as racially or ethnically underrepresented, and 62% reported their child had not participated in a ClTr. Under-resourced caregivers reported higher RPS-C barrier scores than adequately resourced caregivers (z=3.18, p=0.001). There were no significant differences in barrier scores across underrepresented vs represented racial and ethnic groups (p=0.203). Lower HL (ρ= 0.557, p<0.001) and higher HMH (ρ = 0.562, p = 0.006) were associated with higher barrier scores. The most frequently identified barrier was difficulty understanding study risks (>90%).Conclusions:Under-resourced SES, HMH, and lower HL were associated with increased barriers to ClTr participation. Caregivers reported modifiable barriers that could be targets for intervention to improve ClTr participation and reduce disparities in childhood cancer outcomes.

A Structural Racism Framework to Guide Health Equity Interventions in Pediatric Oncology.

Indigenous Australians experience a greater burden of cancer than other Australians, but there is little systematic information about their experiences of cancer care. Patient-centred care is increasingly recognised as one of the core domains of quality care, alongside clinical effectiveness and patient safety. Qualitative studies have identified significant issues relating to Indigenous patients' experiences of cancer care, but these data are often insufficient to inform and evaluate health service improvement. We need to establish appropriate methods that will lead to systematic, routinely collected, accurate, population-based data on the experiences of care of Indigenous people with cancer, and determine how best to translate these data into improvements in the delivery of care to this population. Genuine Indigenous leadership and involvement will be necessary, with the whole approach underpinned by the primary aim of improving health outcomes for this population.

Background: Palliative care is an approach that improves quality of life for patients and families facing challenges associated with life-threatening illness. In Alberta, most people who received palliative care received it late. Late palliative care negatively affects patient and caregiver experiences and decreases quality of life. This study aims to understand patient and caregiver experiences of advanced colorectal cancer care to inform an early palliative care pathway for advanced cancer care. Methods: A qualitative study that is embedded within a larger program of research on the implementation of the Palliative Care Early and Systematic (paces) pathway. Semi-structured telephone interviews with patients and their caregivers living with advanced colorectal cancer were conducted to explore their experiences with cancer care services received before pathway implementation. Interviews were transcribed, and the data were thematically analyzed, supported by the qualitative analysis software NVivo. Results: Interviews with 15 patients and 7 caregivers from Edmonton and Calgary were conducted over the telephone. Most participants found the Putting Patients First tool to be useful at their appointments; however, some mentioned a preference for viewing their scores over time. A total of 6 main themes were identified: (1) Meaning of palliative care (2) Communication (3 main subthemes: communication of diagnosis, communication between patient and oncologist, communication between providers) (3) Relationship with health care providers (including oncologist, family doctor, and nurses) (4) Access to care (cost of care, proximity to care, after hours care) (5) Patient readiness for advance care planning (6) Patient and family engagement in care, with mixed experiences in how patients were involved in their care. Conclusions: Most participants misperceived palliative care to mean “end-of-life care,” suggesting a need for improvement in the delivery of palliative care information. Understanding the care experiences of patients and caregivers will inform the development of a care pathway for early palliative care.

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.

e13818 Background: Clinical trial participation is associated with improved childhood cancer outcomes. There are certain groups with less access to pediatric clinical trial participation. Relationships among modifiable factors driving these differences such as poverty, household material hardship (HMH), and health literacy (HL) are unknown. Identifying modifiable barriers to research enrollment and participation is essential to improving childhood cancer outcomes. The aim of this study was to compare caregiver-reported barriers to pediatric oncology clinical trial enrollment and participation between underrepresented and represented racial groups and between adequately resourced and underserved socioeconomic status (SES) groups. Methods: English and/or Spanish-speaking caregivers of children diagnosed with cancer in the last 5 years anonymously completed the Research Participation Survey (RPS) and the HLS19-Q12 health literacy assessment. On the RPS, caregivers rated 16 barriers to clinical trial participation on a 5-point Likert scale (1 = not at all true, 5 = very true). Analyses of covariance were used to compare RPS mean barrier scores between represented and underrepresented racial/ethnic groups and between adequately resourced and underserved SES groups while controlling for previous clinical trial participation. The underrepresented race/ethnicity group included caregivers who self-identified as non-White, and/or Hispanic. The underserved SES group included caregivers experiencing HMH, which was defined by endorsing &gt; 1/3 of the following items – food insecurity, housing instability, and household income &lt; 30th percentile on 2020 US census. Results: Participating caregivers (n = 59) spanned a broad geographic distribution. Over half (51%) of participants identified as racially/ethnically underrepresented and 64% were socioeconomically underserved. The majority (63%) of caregivers reported their child had not participated in a pediatric oncology clinical trial. Adequately resourced caregivers reported significantly lower barrier scores than underserved caregivers (F = 6.101, p = 0.004). There were no significant differences in barrier scores across underrepresented vs represented racial/ethnic groups (p = 0.102). Lower HL was correlated with higher barrier scores (R = -0.557, p &lt; 0.001). Caregivers most frequently identified difficulty understanding risks of study participation (&gt; 90%), difficulty paying for food, rent, and other bills (59%), concerns about missing too much work or school (51%), and childcare for other family members (41%) as barriers to clinical trial participation. Conclusions: In a sample of caregivers of children with cancer, HMH and low HL were significantly associated with increased barriers to pediatric oncology clinical trial enrollment. Caregivers most frequently identified modifiable barriers to participation that could be targets for intervention to increase access in childhood cancer outcomes.

BackgroundUnderstanding how patient-reported experiences of care and overall rating of care vary among patients with different characteristics is useful to help interpret results from patient experience surveys and design targeted improvement interventions. The primary objective of this paper was to identify the socio-demographic and health-related characteristics independently associated with overall rating of cancer care. The secondary objective was to explore if and how these characteristics were associated with specific experiences of cancer care.MethodsThis cross-sectional multicenter study analyzed self-reported data collected from 2696 patients diagnosed with breast, prostate, lung, colorectal, skin, or hematological cancer from four large hospitals in French-speaking Switzerland. Multivariate logistic regressions with purposeful stepwise selection of independent variables were used to identify the socio-demographic and health-related characteristics independently associated with overall rating of cancer care in the primary analyses. In the secondary analyses, we ran the multivariate model from the primary analyses with specific experiences of care as outcomes to estimate the adjusted odds ratios (OR) and 95% confidence intervals (CI) of the selected characteristics.ResultsRespondents’ mean rating of overall cancer care was 8.5 on a scale from 0 to 10, with 17% categorized as reporting a low rating (0–7 rating). Being a woman (OR 1.43, 95% CI 1.12–1.83), not being Swiss (OR 1.47, 95% CI 1.12–1.94), reporting lower health literacy (OR 1.95, 95% CI 1.54–2.47), preferring making medical decisions alone (OR 1.92, 95% CI 1.38–2.67), having forgone care due to cost (OR 1.72, 95% CI 1.29–2.29), having used complementary medicine (OR 1.55, 95% CI 1.22–1.97), and reporting poorer health (OR 3.12, 95% CI 2.17–4.50) were all independently associated with a low rating of overall cancer care. Poorer health, lower health literacy, and having forgone care were the three characteristics most often associated with problematic experiences of care.ConclusionsOur results identified several patient characteristics consistently associated with lower overall rating of care and specific experiences of cancer care. Among these determinants, health literacy and financial hardship emerged as key recurring factors shaping poor patient experiences that should be prioritized for attention by cancer care services.

Knowledge about health literacy challenges among the general population is valuable for initiatives targeting social inequity in health. We investigated health literacy in various population groups and the impact of healthcare-seeking behaviour by analysing the associations between (i) lifestyle, socioeconomics, self-rated health, chronic disease, and health literacy and (ii) symptom burden, contact to general practitioner (GP), and health literacy. In total, 27488 individuals participated in a population-based survey. Questionnaire data comprised information about symptoms, GP contact, lifestyle, self-rated health, chronic disease, and four aspects of health literacy: feeling understood and supported by healthcare providers, having sufficient information about health, having social support for health, and being able to actively engage with healthcare providers. Socioeconomics were obtained from registers. Descriptive statistics and multivariable linear regression models were applied. Individuals who smoked, lived alone, had different ethnicity than Danish, and low self-rated health had more health literacy challenges reflected in lower scores for all aspects of health literacy. Individuals with high symptom burden and those who had presented a high absolute number of symptoms to their GP were less likely to have sufficient information about health and be able to actively engage, whereas individuals reporting GP contact with a high relative percentage of their symptoms were more likely to feel understood and supported by healthcare providers. Health literacy challenges are related to healthcare-seeking behaviour and several individual factors. To address social inequity in health and society, interventions aimed at both the individual and community-based health literacy are essential.

Understanding pregnant women's health literacy strengths and challenges: a cluster-based exploration in the Health Literacy in Pregnancy (HeLP) study.

BackgroundThere is growing appreciation of the role health literacy plays in population health and health care design. Health literacy encompasses an individual’s capacity to manage their health and the responsiveness of the health system. Our aim was to identify the health literacy strengths and challenges in an Australian cohort living with motor neurone disease (MND), including both people living with the disease and their carers.MethodsThis study used the Health Literacy Questionnaire and eHealth Literacy Questionnaire for health literacy assessment. Using a secure online platform, an anonymous survey was disseminated which included demographic data and clinical measurements. Descriptive statistical analysis and cluster analysis were employed to describe the sample and to identify different health literacy patterns in subgroups of people living with MND and their carers.ResultsA total of 227 people participated (171 people living with MND and 56 carers). Cluster analysis generated fifteen cluster profiles for the cohort living with MND and seven cluster profiles for carers. The variability and potential significance of patterns of health literacy strengths and challenges within the MND community are described. There was extensive diversity within the sampled population, with a mix of sociodemographic backgrounds across each cluster profile.ConclusionsThe health literacy cluster profiles created from this study provide insight into the full spectrum of where the challenges and strengths exist for individuals and subgroups of people managing this fatal disease. The results from this study pave the way for generating system wide interventions that address health literacy diversity, to create more enabling health care environments for all those affected by MND.

Background Health literacy difficulties among (groups of) individuals represent a significant public health challenge. Improving health literacy responsiveness of systems and services could reduce health inequalities in communities and patient populations. Methods We conducted a mixed-methods study to improve health literacy responsiveness in three Dutch rheumatology centres, using the OPtimising HEalth LIteracy and Access (Ophelia) approach. Patients and health professionals were involved in an inclusive needs assessment (n = 895 and 39, respectively) and co-design consultations to identify local solutions (n = 14 and 38, respectively). Based on all steps, we formulated transferable lessons learned (outcome-related or process-related) for public health and health care. Results Outcome-related lessons: a mixed-methods Ophelia approach was successful in identifying health literacy challenges and 175 potential solutions. Challenges are similar between disease groups and centres, but require solutions specific to the local context. Recognising challenges at the point of care is difficult. For a healthcare service to be responsive to health literacy needs, increased awareness alone is not enough; it will require a conscious actions and systemic change at multiple levels, including training. Process-related lessons: prerequisites for a successful health literacy responsiveness project include using multidimensional measurements, an inclusive participatory approach with all stakeholders, collaboration with experts in a community of practice, and strong project governance. Conclusions The Ophelia project in rheumatology care was successful in its aims of finding solutions to improve health literacy responsiveness. Public health and healthcare organisations should consider improving their health literacy responsiveness using a grassroots co-design approach. However, project success will depend on the quality of its governance; future programmes should follow a systematic approach. Key messages • Using a grassroots co-design approach such as Ophelia can help identify locally relevant solutions to health literacy challenges and support organisational efforts to reduce health inequalities. • Successfully improving health literacy responsiveness requires, at minimum, inclusion of people with most complex health literacy challenges, strong project governance, and stakeholder engagement.