Ashley J. Housten

Cancer prehabilitation aims to improve outcomes by helping patients physically and mentally prepare for treatment. This qualitative study aimed to investigate barriers and facilitators to engaging in prostate cancer prehabilitation and create recommendations for designing interventions. Semi-structured interviews were used to explore perspectives on cancer prehabilitation among men diagnosed with prostate cancer in Alberta, Canada. Interviews were thematically analyzed to identify barriers and facilitators to engagement. Themes were mapped to the Behaviour Change Wheel (BCW) to create recommendations for intervention development. Thirty-four men diagnosed with prostate cancer completed interviews. Key facilitators to engaging in prehabilitation included opportunities for social connection, strategies to reduce treatment-related side effects, and support coping with the psychological impact of diagnosis. Barriers included competing care priorities, lack of familiarity with prehabilitation, logistical challenges, and stigmatized perceptions of help-seeking. To promote improved patient engagement, prehabilitation interventions should be initiated near diagnosis, offer personalized, goal-oriented interventions with multiple components, and have options for virtual participation to increase accessibility. These recommendations may help improve the uptake and impact of prehabilitation programming in prostate cancer care. Further research to identify evidence-based interventions for mitigating treatment-related side effects may help increase patient motivation to engage in cancer prehabilitation.

Financial toxicity (FT) worsens health outcomes and quality of life for childhood, adolescent, and young adult (CAYA) cancer survivors. This scoping review examines interventions designed to alleviate FT among CAYA cancer survivors and identifies the levels of influence within the multilevel framework that these interventions target (i.e., patient, family/caregiver, provider, organization, policy, and society levels). Additionally, this review analyzes how current interventions align with National Comprehensive Cancer Network (NCCN) Recommendations for Supportive Care Services/Interventions for Socioeconomic Issues . We included English‐language studies mentioning cost or adjacent terms that analyzed the effectiveness/efficacy of interventions designed to address FT in CAYA populations. Thirteen studies met the inclusion criteria. Most ( n = 11, 84.6%) studies were conducted in the United States and addressed multiple levels of influence, primarily targeting the individual ( n = 13, 100%), organizational ( n = 7, 53.8%), and provider ( n = 7, 53.8%) levels. Regarding NCCN recommendations, interventions most frequently addressed the integration of financial assistance into survivorship care plans ( n = 8, 61.5%) and the establishment of financial support programs ( n = 7, 53.8%). Extant literature focuses primarily on the individual level, financial assistance, and support programs. Future research should elucidate complex parameters defining multilevel interventions and prioritize gaps in current interventions according to NCCN guidelines.

Background: Cancer‐related financial hardships are common and negatively impact cancer‐related outcomes. Supporting patient‐clinician cost discussions, financial navigation, and insurance literacy may help mitigate this distress. This qualitative study informed the adaptation of the “Improving Cancer Patients’ Insurance Choices” (I Can PIC) tool into the “Cancer Affordability REsources” (CARE) Tool by updating content, design, and implementation processes. Methods: Patients ≥ 18 years, diagnosed with lung, prostate, colorectal, or gynaecological cancer within 3 years, English‐speaking, and treated at specified urban or rural cancer centres were included. Healthcare personnel (HP) were employed at one of these cancer centres and worked with the specified cancer types. The Consolidated Framework for Implementation Research (CFIR) and the 5As of Access in Healthcare Framework guided the development of semi‐structured interview guides and codebook. Interviews were conducted virtually, transcribed professionally, coded, and analysed using rapid thematic analysis. Results: Twenty‐two patients with cancer and 14 HP from urban and rural cancer centres participated (N = 36). We identified four themes. First, there was a mismatch of expectations around cost conversations. HP expressed concerns about potentially introducing financial‐related distress and did not know specific cost information, while patients emphasised the need for cost discussions with HP. One shared, “I'm kind of… removed from the financial aspect, which is good ‘cause then I can just focus on taking care of patients.” In contrast, one patient said, “…It's not acceptable to just have your hands up and say I don't know… a patient needs to know.” Second, preferences for timing of cost conversations varied, with a need for both immediate and subsequent conversations per patient readiness. One patient shared, “I would have loved to speak with someone about the cost, but I was more concerned about my survival…”. Third, there were multiple usability considerations, including technological demands, health literacy, and the perceived relevance of the tool. Fourth, context‐specific delivery is critical to ensure access. Discussion: This user‐centred content, usability, and implementation focused adaptation of the CARE Tool incorporated perspectives from patients, HP, and end‐users. Next steps will evaluate the CARE Tool in a clinical trial, assessing financial hardships, self‐efficacy, health insurance literacy, and implementation. Patient and Public Contribution: This research teams includes a patient advocate and our research question, design, data collection, and interpretation of results was presented for feedback to our community advisory board, made up of patient and public research partners. We recruited patients and healthcare personnel to participate in this study. We greatly appreciate the time, perspective, and experience that our patient and community research partners and participants have contributed to this study.

Background: Sickle cell disease (SCD) is the most common monogenic disorder in humans and occurs predominantly among individuals who identify as Black or African American in the United States. In earlier work, we found that developmental delays were present in more than 50% of children with SCD before the age of 3 years, yet none had been diagnosed or referred to intervention services. Children whose caregivers participated in a home-based caregiver education program demonstrated improved scores on standardized developmental measures. When developmental delays go unidentified, children miss a critical opportunity for intervention during a period of rapid neurological change. Yet few, if any, studies have described the incidence and severity of developmental delays among children with SCD compared to controls. Objective: The purpose of this study is to determine the incidence and severity of developmental delays in children with SCD under 3 years of age (aim 1), test a 12-month home-based Sickle Cell Collaboration for Child Development (SCCCD) intervention (aim 2), and conduct a mixed methods study to identify contextual determinants to prepare for future scaling of the SCCCD intervention across health care systems (aim 3). Methods: Consistent with American Academy of Pediatrics guidelines, children with SCD will be evaluated at 9, 18, and 30 months using the Bayley Scales of Infant Development, Fourth Edition, to determine the incidence of developmental delay over the first 3 years of life compared to demographically matched peers (n=100, aim 1). The SCCCD intervention, adapted from a pilot study, combines skilled occupational therapy, the Parents as Teachers curriculum, and SCD-specific caregiver education, delivered over 12 monthly home visits (n=25, aim 2). Interviews with caregivers who participated in and those who declined the intervention will identify contextual determinants (ie, facilitators and barriers) to inform future testing and broader implementation of the SCCCD (aim 3). Results: This project has been approved by the Institutional Review Board at Washington University School of Medicine (202104034 and 202407080). As of May 31, 2026, a total of 50 participants (26 children with SCD and 24 typically developing children for the comparison cohort) have participated for aim 1. Aim 2 recruitment began in July 2025, and 5 caregiver/child dyads have participated so far. The study is expected to be completed by 2028. Conclusions: These findings will provide the first prospective characterization of developmental trajectories in children with SCD across the first 3 years of life and establish preliminary evidence for a disease-specific, home-based intervention to improve developmental outcomes in this underserved population. The results will directly inform a future randomized controlled trial of the SCCCD intervention.

BACKGROUND Sickle cell disease (SCD) is the most common monogenic disorder in humans and occurs predominantly among individuals who identify as Black or African American in the United States. In earlier work, we found that developmental delays were present in more than 50% of children with SCD before the age of three, yet none had been diagnosed or referred to intervention services. Children whose caregivers participated in a home-based caregiver education program demonstrated improved scores on standardized developmental measures. When developmental delays go unidentified, children miss a critical opportunity for intervention during a period of rapid neurological change. Yet few, if any, studies have described the incidence and severity of developmental delays among children with SCD compared to controls. OBJECTIVE The purpose of this study is to determine the incidence and severity of developmental delays in children with SCD under three years of age (Aim 1), test a 12-month home-based Sickle Cell Collaboration for Child Development (SCCCD) intervention (Aim 2), and conduct a mixed methods study to identify contextual determinants to prepare for future scaling of the SCCCD intervention across healthcare systems (Aim 3). METHODS Consistent with American Academy of Pediatrics guidelines, children with SCD will be evaluated at 9, 18, and 30 months using the Bayley Scales of Infant Development-4 (Bayley-4) to determine the incidence of developmental delay over the first 3 years of life compared to demographically matched peers (n=100, Aim 1). The SCCCD intervention, adapted from a pilot study, combines skilled occupational therapy, the Parents as Teachers® curriculum, and SCD-specific caregiver education, delivered over 12 monthly home visits (n=25, Aim 2). Interviews with caregivers who participated in and those who declined the intervention will identify contextual determinants (i.e., facilitators and barriers) to inform future testing and broader implementation of the SCCCD (Aim 3). RESULTS This project has been approved by the Institutional Review Board at Washington University School of Medicine (#202104034, 202407080). As of 5/21/26, a total of 50 participants (26 children with SCD, 24 typically developing children for the comparison cohort) have participated for Aim 1. Aim 2 recruitment began in July 2025 and five caregiver/child dyads have participated so far. The study is expected to be completed by 2028. CONCLUSIONS These findings will provide the first prospective characterization of developmental trajectories in children with SCD across the first three years of life and establish preliminary evidence for a disease-specific, home-based intervention to improve developmental outcomes in this underserved population. Results will directly inform a future randomized controlled trial of the SCCCD intervention.

Purpose: Personalized risk communication (PRCom) can help individuals make informed decisions about electing to undergo cancer screening based on their specific risk. In this systematic review, we examined existing risk communication strategies used in the presentation of PRCom and how they may impact screening-related cognitive and behavioral outcomes. Methods: We searched Embase.com, Ovid-Medline All, Scopus, CINAHL Complete, and CENTRAL Trials (via Cochrane Library) for randomized controlled trials addressing interventions with an element of “personalized” cancer risk communication based on the individual’s risk factors. Results: Eighteen unique studies were included. From these 18 studies, we extracted data on PRCom presentation methods and outcome measures such as knowledge and screening completion. Text was used in the majority of PRCom (56%, n = 10), followed by graphs (39%, n = 7), icon arrays (17%, n = 3), charts (17%, n = 3), graphics (17%, n = 3), and video (6%, n = 1). None of these studies included direct format comparisons. We found that knowledge of risk increased in scenarios where PRCom: 1) combined visual (e.g., videos) and text-based communication; and 2) used verbatim (4/5), rather than gist communication (2/7). Screening completion also increased for PRCom with both visual and text-based communication (3/4). However, knowledge of risk and screening completion were minimally impacted if PRCom used only text/verbal communication (1/3 for knowledge of risk, 0/2 for screening completion) or only visual aids (1/3 for knowledge of risk, 2/5 for screening completion). Conclusion: Future research examining the translation of communication strategies to screening-related cognitive and behavioral outcomes is warranted.

Objective: SCD is an inherited red blood cell disorder that disproportionately affects Black and African American children in the United States. SCD is associated with developmental delays, most frequently in the cognitive and language domains. Early intervention (EI) services offer an opportunity to mitigate delays through developmental support and family education. EI services are underutilized among children with SCD because of several significant challenges, including limited awareness among pediatric providers, inadequate family-centered communication, and suboptimal screening protocols during routine well-child visits. Method: Using a qualitative approach, semi-structured interviews were completed with 11 caregivers of children with SCD who had been referred to and wanted EI services. Results: Caregiver interviews revealed 3 key themes: home-based services are convenient for families managing complex medical needs, caregivers observed meaningful improvements in child development through EI participation, and pediatric provider support with referral, rather than family self-referral, made connecting with EI easier. Conclusion: Caregivers described specialty providers as central to connecting their families with EI. Caregivers whose providers completed the referral reported that the process asked little of them. Families in this sample valued EI for their children with SCD. Systematic provider-facilitated referral is a caregiver-identified facilitator that warrants evaluation as a strategy to strengthen developmental surveillance and referral to EI services for children with SCD.

Introduction: Shared decision-making (SDM) is a process whereby patients are supported to reach decisions about their healthcare in collaboration with healthcare professionals. International policy and clinical guidelines highlight the ethical imperative of SDM and recommend SDM for many healthcare decisions and contexts. However, despite decades of SDM research, the impact of implementing SDM interventions within health care remains uncertain. High-quality health technology assessment (HTA) requires an understanding of how interventions to facilitate the adoption and implementation of SDM (e.g., through the use of patient decision aids, decision coaching, question prompt lists, training and feedback, or service changes) impact clinical and health service outcomes. Yet, synthesis of the existing literature is hindered by substantial heterogeneity in the evaluation of interventions to facilitate SDM. A core outcome set (COS) is an agreed standardised set of outcomes that should be measured and reported in all effectiveness studies. There is a COS for SDM in the context of rheumatology (rheuCOS-SDM), designed for use in research studies (e.g., clinical trials or observational studies) evaluating the impact of SDM interventions on clinical outcomes for patients. It is unclear, however, whether the outcome domains identified within a rheumatology context are relevant, comprehensive, or comprehensible when applied to a variety of SDM interventions tailored to and interacting with a range of patient populations, healthcare settings and contexts. The aim of this study is to develop a generic COS for evaluating the impact of SDM interventions on various outcomes. Outcomes for consideration may include assessments of the behaviours and experiences of patients, important others (e.g., carers or relatives) and health professionals, the dynamics within patient-professional interactions, health outcomes for individuals and for the wider population, and the cost-effectiveness of care. The broad scope of the COS will ensure its applicability and utility within diverse healthcare contexts and enable the synthesis of evidence to draw clear conclusions about the impact of SDM interventions, to influence healthcare policy. We define this new, comprehensive COS as the COS-SDM. Methods and Analysis: Through engagement with key interest holders (including patients and members of the public, clinicians and academics), we agreed on the scope of the COS and to adhere to the Core Outcome Measures in Effectiveness Trials (COMET) handbook and Core Outcome Set-STAndards for Development (COS-STAD) guidelines. This will involve production of a ‘long’ (comprehensive) list of candidate outcome domains (using evidence synthesis, a COS developed in the context of Rheumatology, and qualitative interviews with interest holders internationally), prioritisation of a ‘short’ (refined) list of core outcome domains (utilising a sequential two-round international online Delphi), and reaching consensus on the final outcome set (through international meetings, applying modified nominal group techniques and predefined criteria for agreement). Ethics and Dissemination: Research ethics approval has been granted in the UK (University of Bristol Faculty Ethics Committee, ref: 7741; University of Exeter Faculty Ethics Committee, ref: 8207624). The final COS will be disseminated by presentation at international conferences and publication in a peer-reviewed journal. Further dissemination is planned through our patient/public advisory group, professional networks, and executive group channels, to publicise the COS to patient groups, funders, journal editors, international regulatory bodies and HTA boards. Registration: This project has been registered in the COMET database ( www.comet-initiative.org/Studies/Details/3586 ).