Background Patient-reported outcome measures (PROMs) are commonly used in research, and when applied at the point of care can support systematic identification of treatment impacts and timely intervention.Aim To understand more about PROM use in pediatric oncology in Australia.Method An online survey of Australian pediatric oncology healthcare providers (HCPs) was conducted using purposive and snowball sampling via oncology practice groups.Results Forty-five HCPs completed the survey (57.8% from New South Wales); 38 (83%) reported using PROMs. Among PROM users, 55.3% used them for research and 52.6% to guide clinical care. PROMs were most commonly used by Allied Health (36.8%), followed by Medical (23.7%) and nursing (21.1%) professionals. Administration occurred via paper (47%), electronically (26%), or both (11%). Integration into medical records occurred in 26.3% of cases. Among PROM users, 18.4% felt uncertain about using or responding to PROMs. Among non-users, key barriers were lack of suitable PROMs (85.7%) and insufficient training (42.9%). Common reasons for using PROMs included symptom screening, identifying unmet needs, and improving patient satisfaction.Conclusions PROM use for clinical practice and research purposes was high in this sample. Despite strong perceived benefits by participants, challenges related to accessibility training limited broader implementation.
This letter responds to Beckmann et al.’s co-design article on improving sexual wellbeing support after prostate cancer. The study offers a timely and patient-centred contribution to survivorship care. Its strengths include mixed-methods evidence synthesis, consumer involvement, and practical recommendations. However, several issues require further attention, including limited partner representation, modest stakeholder diversity, weak implementation detail, and limited discussion of equity across sexuality, culture, rurality, and private care. Future work should test feasibility, cost, and measurable outcomes.
Background Variation in conceptualization and measurement of financial consequences of cancer treatment poses issues for analysis and interpretation.Aims This scoping review characterized terms, conceptualizations, and measures used to describe financial experiences of post-treatment cancer survivors.Methods Reported according to PRISMA-ScR guidelines, searches for published literature on financial experiences were conducted using Medline (Ovid), Embase.com (Elsevier), Core Collection (Web of Science), Cochrane Central (Ovid), and ClinicalTrials.gov in February 2026. U.S.-based empirical studies with adult (≥18 years) cancer survivors (≥6 months post-treatment) were eligible.Results 5901 titles and abstracts were double screened for eligibility, yielding 623 for full text review; 125 met criteria for data extraction. We identified 11 terms and 58 measures. Financial hardship and burden were most prevalent, often used interchangeably. Financial toxicity described the impact of cancer-related financial consequences on quality of life. Financial stress/distress and financial worry described psychological aspects of financial hardship/burden, whereas financial problems, strain, difficulty, and economic burden described material and behavioral domains. Common measures included the Medical Expenditure Panel Survey (N = 24), the National Health Interview Survey (N = 24), and the COmprehensive Score for Financial Toxicity (N = 23).Conclusions Future work should look to consolidate the terms, their definitions, and measurement of the financial experiences.
Background Persistent fatigue impairs quality-of-life after allogeneic hematopoietic stem cell transplantation (alloHSCT), and evidence-based interventions are lacking. We investigated the feasibility of combined aerobic and resistance training for long-term survivors post-alloSCT with persistent fatigue in a prospective, single-center, single-cohort pilot study.Methods Consecutive adults (median age 60 years) with NCCN-defined fatigue persisting >3 months, at a median of 29 months (range 12–54) post-alloHSCT, were recruited. The participants completed a 12-week exercise intervention combining cardiopulmonary exercise test (CPET)-targeted high-intensity aerobic and progressive resistance training, via mixed telehealth and in-person sessions.Results Thirteen of 18(72%) eligible participants enrolled, and 11(85%) completed the intervention with 94% attendance, with 100% of the participants stating that they were very (7/11) or quite (4/11) satisfied, meeting the primary feasibility endpoint. Telehealth satisfaction was rated as neutral to slightly positive across the measured domains. In addition, fatigue improved from baseline to eight weeks (mean FACIT-F 30.6 ± 11.5 to 38.4 ± 10.7), alongside overall quality-of-life, and anxiety/depression symptoms. Clinically significant improvements in cardiorespiratory fitness, six-minute walk distance, and strength measures were also observed.Conclusion Personalized combined high-intensity aerobic and resistance exercise training is feasible, demonstrating preliminary efficacy for managing persistent fatigue in long-term alloHSCT survivors. Larger controlled studies are warranted to confirm these findings.
Purpose:To evaluate the associations of obesity and cancer-related fatigue (CRF) among breast cancer survivors, and the impact of their co-occurrence on physical function. Methods:In a nationwide randomized clinical trial, we assessed body mass index (BMI; kg/m2), CRF via the Brief Fatigue Inventory (BFI), and physical function via hand grip dynamometry (muscular) and 6-minute walk test (cardiorespiratory) among breast cancer survivors at baseline. Results:Among 456 participants with a breast cancer diagnosis (stage I-IIIC, mean age 55.9 years, 23.5 months post first-treatment, 86% white), 43.9% have obesity (BMI ≥ 30 kg/m2), and 32.7% have overweight (BMI 25-29.9 kg/m2). Compared to those with a normal weight, survivors with obesity are more than twice as likely to experience moderate-severe CRF (BFI total score ≥ 4; OR [95%CI] = 2.21 [1.35-3.63]). Survivors with co-occurring overweight/obesity and moderate-severe CRF have significantly worse cardiorespiratory function than those with either condition alone. Discussion:Overweight/obesity and CRF are highly prevalent among breast cancer survivors. Survivors with obesity experience worse CRF compared to those with normal weight. Survivors with co-occurring overweight/obesity and severe CRF experience worse cardiorespiratory function, and this persists post-diagnosis. Given the long-term detrimental impact of these conditions on QOL and survival, these findings underscore the need for targeted interventions.
Background Survivorship care plans (SCPs) aid cancer survivors in transitioning from active treatment to long-term survivorship. Mobile health approaches to survivorship could enhance the effectiveness of SCPs. This study aims to better understand the perspectives and preferences cancer survivors have toward a mobile SCP application.Methods Qualitative data were collected via semi-structured interviews among participants from the POST-Treatment Health Outcomes of Cancer Survivors (POSTHOC) randomized controlled trial, which delivered an SCP via an app or a static document. Exit interviews were analyzed using a qualitative descriptive approach. Then, responses were systematically categorized into structured variables for quantitative and mixed-methods analysis.Results Twenty-eight interviews were conducted among survivors who had recently completed curative treatment. Six key themes emerged: usefulness of SCPs, monitoring lifestyle behaviors and symptoms, lifestyle support, digital health, self-management and independence, and study support and design. Participant suggestions for feature customization and peer support highlight the need for SCPs to serve both physical and psychosocial needs.Conclusions Cancer survivors found the mobile SCP application beneficial for promoting healthy behaviors and enhancing symptom management, physical activity, and nutrition. With further advancements in mobile health technologies, the SCP can evolve into an adaptable and interactive tool that supports cancer survivors through transition to long-term survivorship.
Purpose To develop practical, evidence-based recommendations for improving sexual wellbeing support for people with prostate cancer (PCa).Methods We used a co-design approach that combined evidence reviews with stakeholder input in the Australian healthcare context. Our research included a scoping review, analysis of patient-reported outcomes, a survey on help-seeking behaviour, and interviews with both PCa survivors and healthcare professionals. These findings guided a stakeholder workshop involving consumers, clinicians, and researchers, where consensus recommendations were developed.Results Key recommendations included: expanding access to specialist nursing roles; strengthening multidisciplinary care by involving allied health professionals, counsellors, and sexologists; subsidising erectile dysfunction treatments and related services; improving healthcare professional training in sexual health; enhancing online information for consumers; and developing standardised guidelines for penile rehabilitation.Conclusion Meeting the sexual health needs of people after PCa requires coordinated action across clinical practice, health services, and policy. These co-designed recommendations provide guidance for policymakers, advocacy groups, professional bodies, and healthcare providers on ways to improve sexual wellbeing support.Implications for cancer survivors Putting these recommendations into practice would help ensure that people with PCa have better access to comprehensive sexual wellbeing care.
Objective This systematic review and meta-analysis assessed evidence regarding dance as nonpharmacologic treatment for the physical symptoms of cancer survivorship.Data sources PubMed, Embase, Scopus.Study selection Following PRISMA guidelines, two reviewers independently screened and assessed data. Randomized controlled trials (RCTs) measuring effects of dance on physical symptoms among survivors were included.Data extraction We extracted characteristics of included studies (e.g., cancer type, dance technique) and interventions (e.g., frequency, intensity, time, type).Data synthesis Twelve RCTs met criteria for inclusion. Dance genres studied included Argentine tango, Greek traditional dance, dance movement therapy, belly dance, ballroom, Latin dance, quang chang wu, The Lebed Method™, and improvisation. Risk of bias was low overall. Meta-analyses revealed a favorable effect on patient-reported physical health with a standardized mean difference (SMD) = 1.51, 95% confidence interval (CI) = [0.23, 2.79], p = 0.03; gastrointestinal dysfunction SMD = 0.53, CI = [−0.27, 1.34], p = 0.08; fatigue SMD = 0.35, CI = [−0.18, 0.88], p = 0.12; stress SMD = 1.43, CI = [−1.48, 4.34], p = 0.17; walking endurance SMD = 0.37, CI = [−1.43, 2.17], p = 0.23; physical activity level SMD = 0.82, CI = [−0.99,2.63], p = 0.24; and sleep SMD = 0.44, CI = [−0.89, 1.77], p = 0.29.Conclusion Dance interventions show potential to alleviate physical symptoms due to cancer or cancer treatment. More work is needed to standardize delivery of dance as a physical rehabilitation option within survivorship care.
Purpose Peripheral neuropathy (PN) is a disabling side-effect of cancer itself and of neurotoxic chemotherapy, which is part of recommended treatment for colorectal cancer (CRC). The incidence of CRC is rising among younger, working-age adults. This study aimed to quantify the association of PN with work outcomes among participants with CRC.Methods participants with CRC from the PROCORE study were analyzed. Baseline characteristics were collected from the Netherlands Cancer Registry (NCR). Work-related details were self-reported. PN was assessed using the EORTC QLQ-CIPN20 questionnaire at baseline(T1), one(T2) and two years(T3) post-diagnosis. The minimally clinical important difference (MCID) classified participants into present and absent sensory or motor PN groups.Results Similar proportions of participants with present or absent PN reported work absenteeism. The median duration of absenteeism was significantly longer for participants with present sensory PN (22 weeks longer at T2; 13,5 weeks at T3) and present motor PN (16 weeks longer at T2; 13 weeks at T3) compared to those with absent PN. Participants who reported job changes or limitations in job performance were more likely to have sensory and/or motor PN. Self-employment was associated with poorer outcomes.Conclusion This study revealed that sensory and/or motor PN was negatively associated with various aspects of CRC survivors’work life, particularly among self-employed individuals, for up to two years after diagnosis. These findings highlight the need for an effective treatment for PN to enhance survivors’ work ability. Patients undergoing neurotoxic chemotherapy should be informed that PN may adversely affect their work life.
Purpose Cardiovascular disease (CVD) represents a leading cause of late morbidity and mortality among survivors of childhood cancer. This study aimed to address barriers to longitudinal survivorship-focused care.Methods A previously validated late cardiovascular risk calculator was implemented based on data elements from Passport for Care in a survivorship cohort in Oklahoma. Survivors at moderate and high risk for late CVD were consented and invited to complete a needs assessment survey with knowledge questions on cardiotoxicity. Thematic analysis of interviews with survivors explored barriers to care.Result Among survivors with PFC (n = 477), 71 and 246 were high and moderate risk, respectively. Of the 317 eligible survivors, 80 were contacted and signed electronic consent. Sixty-four percent of participants completed the survey (n = 49; 32 survivors and 17 parents or guardians). Areas of greatest need included improved information delivery and financial concerns. Interviews of survivors (n = 9) revealed themes such as distance to the hospital, transportation, financial hardship, lack of information, and transitions to adult care as significant barriers to longitudinal survivorship-focused care.Conclusion Unaddressed information needs, socioeconomic factors, and geography were significant barriers for survivors. Participants were receptive to telehealth-based interventions.
Background: Prior research indicates that patients with colorectal cancer (CRC) who receive social support experience reduced levels of anxiety and depression as well as an improvement in overall health and quality of life following surgical intervention. There is limited research on how patients with CRC receive specific types of support. The purpose of this quality improvement project was to explore the types of support patients with CRC receive both at home and from the clinic.Methods: In 2022, 14 patients with CRC participated in 30-minute semi-structured interviews. Patients were asked about their perceptions of home support and clinic support. The interviews were recorded, and transcripts were cleaned and qualitatively coded using ATLAS.ti software.Results: At home, participants identified life logistics and emotional help as the most important forms of support. In the clinic, participants identified effective communication as the most important support.Conclusions: Patients reported having enough support at home and in the colorectal cancer clinic and identified several specific types of social support that they thought were valuable. Additional research should focus on understanding the needs of patients with CRC by considering the types of social support identified here in order to inform how clinics can best support them.
Sexual dysfunction (i.e. sexual side effects) related to cancer and cancer treatment is a common challenge for women in survivorship. Most research has focused on women with a history of reproductive cancers, leaving sexual side effects among survivors of non-reproductive cancers understudied. Using data from a cancer survivor needs assessment, we sought to better understand the prevalence of sexual side effects among women cancer survivors. We summarized the prevalence of sexual side effects among women with a history of reproductive and non-reproductive cancers. Among the 335 women who completed the survey, about half (49.8%) had a history of reproductive cancers and the other 50.2% had a history of non-reproductive cancers. Survivors in both groups reported the presence of sexual dysfunction at the same rate of 19%, with 86% of those women attributing the effects to their cancer or treatment. However, only 15% of those with sexual dysfunction sought treatment. Women survivors who reported sexual dysfunction had a lower quality of overall health, mental health, and quality of life compared to the women who did not have sexual side effects. Our findings support the need for developing approaches to manage sexual side effects in survivorship regardless of cancer type.
Background:It is important to understand how health behaviors, and beliefs about health behaviors and cancer risk, vary by sociodemographic factors. Methods:The Health Information National Trends Survey - Surveillance, Epidemiology, and End Results study sampled US cancer survivors in 2021. We used weighted logistic regression to examine associations between sociodemographic factors, health behavior guideline adherence, and beliefs about health behaviors and cancer risk. Results:Among 1134 cancer survivors, only 4% were current smokers, but 48% consumed alcohol and only 43% met aerobic exercise guidelines and 31% met strength training guidelines. Alcohol use was more common among males [vs. females, odds ratio (OR): 1.55; 95% confidence interval (CI): 1.12, 2.14], employed cancer survivors (vs. retired OR: 1.74; 95% CI: 1.07, 2.84), and those with higher incomes (<$50,000 vs. $100,000+ (ref.) OR: 0.58; 95% CI: 0.36, 0.94). Cancer survivors less likely to meet aerobic exercise guidelines included those who were not retired or employed (e.g. disabled; vs. retired OR: 0.49; 95% CI: 0.28, 0.86), with incomes <$50,000 (vs. $100,000+ OR: 95% CI: 0.50; 95% CI: 0.32, 0.78), and residing in non-metropolitan areas (vs. metropolitan with 1 + million residents, OR: 0.56; 95% CI: 0.38, 0.81). Females and retired cancer survivors were less likely to meet strength training guidelines (males vs. females (ref.) OR: 1.62; 95% CI: 1.23, 2.12; employed vs. retired (ref.) OR: 1.67; 95% CI: 1.04, 2.66). Lower education was strongly associated with beliefs that cancer risk is outside individual control (OR's: 1.73-3.85). Beliefs about health behaviors and cancer risk were not associated with health behavior guideline adherence. Conclusions:Smoking was uncommon in this sample of cancer survivors, but many reported alcohol use and did not meet exercise guidelines. Patterns of sociodemographic factors differed by behavior. Alcohol use was more common among males and those with higher incomes. Cancer survivors with lower incomes and residing in non-metropolitan areas had the highest need for physical activity interventions.
Despite the growing attention to psychosocial survivorship outcomes for adolescent cancer survivors (ACS), little is known about how different sources of support – particularly peer versus parent support – are uniquely related to ACS specific aspects of self-esteem. This gap is critical to address, as self-esteem is a core developmental task of adolescence, and may be differentially affected both by cancer experience and social context. In this study, data was collected from 77 ACS (ages 11-19) who completed perceived social support and self-esteem measures at an oncology camp. Results revealed that ACS who reported higher perceived social support reported higher self-esteem. Both peer and parent support were significantly related to all three self-esteem domains: performance, appearance, and social. Contrary to prior research suggesting parental support is more infuential, our findings suggest that peer and parent support are equally important across all self-esteem domains. Overall, these findings highlight the importance of integrating peer-based support interventions in patient care to enhance the psychosocial well-being of adolescent cancer survivors.
Objective:To investigate the association between urban residential greenspace and cardiovascular disease (CVD) comorbidity at breast cancer (BC) diagnosis among older women, and explore regional, racial/ethnic, and socioeconomic differences. Study design:This is a cross-sectional analysis of a population-based registry data. Methods:Using the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked database, data on women aged 66-90 diagnosed with BC (2010-2017) were analyzed. A tract-level measure of tree canopy cover was derived from the National Landcover Database (2011) and linked to SEER-Medicare records. Logistic regression models assessed the probability of CVD comorbidity based on state-specific percent tree canopy quartiles, adjusting for census tract clustering and covariates. Results:Out of 116,660 women, 74.7% (n=87,152) had CVD comorbidity at BC diagnosis. Overall, women residing in areas with higher percent tree canopy cover had a lower likelihood of CVD comorbidity compared to those in the lowest canopy areas, with an Adjusted Odds Ratio (AOR) and 95% confidence interval (CI) of 0.78 (0.71-0.85). Racial/ethnic, socioeconomic status (SES), and regional variations were noted. Adjusted effects of greenspace were significant only for NHW women; AOR (95%CI) = 0.78 (0.71-0.86). Women in the highest tree canopy quartile in California, New Jersey, and New Mexico had lower odds of comorbid CVD, with AORs (95% CI) of 0.80 (0.72-0.88), 0.77 (0.71-0.84), and 0.46 (0.34-0.63) respectively. Adjusted results for New York, Massachusetts, and Kentucky showed adverse harmful effects, while adjusted results for all other SEER states were not statistically significant. Both dual enrollment eligible and non-eligible women had benefits from greenspace, but greater benefits were observed in dual enrollment eligible women; AOR (95% CI)= 0.64 (0.48-0.86) versus 0.76 (0.69-0.84) for non-eligible women. Conclusions:Overall, urban greenspace is associated with a lower risk of CVD comorbidity among older women with BC, and variations exist by region, race/ethnicity, and SES. Our findings underscore the role of greenspace in mitigating Cardio-Oncology disparities. Further research is needed to better understand factors contributing to observed differences across SEER regions and racial/ethnic subgroups. A better understanding of interactions among greenspace, other environmental factors, and individual lifestyle factors will help improve CVD outcomes among women with BC.
Background Self-efficacy has been associated with higher quality of life (QOL) in cancer survivors. In this study, we assessed whether complementary and integrative medicine (CIM) utilization, health behaviors, and QOL are associated with self-efficacy among sarcoma survivors.Methods Adults who received treatment for soft tissue sarcoma in the past 10 years were identified and sent an anonymous survey comprised of a questionnaire to assess health behaviors and CIM use, the Cancer Behavior Index-Brief to assess self-efficacy, and PROMIS surveys to measure QOL. We assessed associations between self-efficacy and health behaviors, CAM use, and QOL.Results 55 subjects out of 182 (30.2%) responded. Median age at treatment was 57 years, with a median of six years from primary treatment; 87% of patients had been treated with radiation and 47% with chemotherapy. The median self-efficacy score was 92 (of possible 108). PROMIS T-scores were similar to the general population. Self-efficacy was correlated with anxiety, depression, fatigue, and the ability to participate. CIM utilization was not correlated with QOL or self-efficacy.Conclusions Among sarcoma survivors, self-efficacy is associated with QOL. CIM utilization is not associated with self-efficacy or with QOL. Further research is needed to learn how to best empower patients to help improve with QOL and experiences after cancer treatment.
Background Sarcoma, a rare and aggressive cancer affecting bone and soft tissue, disproportionately impacts young individuals.Aim The aim of this study was to explore the transition between treatment and post-treatment experiences of informal carers and people diagnosed with sarcoma within Australia, recognizing the unique challenges.Methods An exploratory qualitative design grounded in social constructivism was applied. Fourteen participants, including eight parent carers and one partner (M = 54 years; 67% female, 33% male), and five adult sarcoma survivors (M = 37 years; 60% female, 40% male), participated in online semi-structured interviews. Reflective thematic analysis was used to analyse the data.Findings Three key themes emerged: “It Takes a Village,” “I’ll Be Strong,” and “Navigating Life after Sarcoma.” “It Takes a Village” highlighted the role of social support from family, friends, and community. “I’ll Be Strong” captured the resilience needed to endure the physical and emotional challenges of sarcoma. “Navigating Life after Sarcoma” focused on adjusting to changes and redefining roles post-treatment. These findings underscore the shared experiences of informal caregivers and people diagnosed with sarcoma, how these were expressed in different ways, and how these two groups both depend on their own strength and social support throughout their experience.Conclusion This study emphasizes the complex and enduring challenges faced by informal carers and adult sarcoma survivors. Challenges that arise emphasize the importance of providing individualist and holistic care specific to sarcoma. Future research should explore and develop long-term effective interventions and consider ways to improve access to sarcoma specific care.
Background: Widespread adoption of digital health innovations (DHI) is often plagued with barriers to successful implementation. We share our experiences piloting and implementing our DHI, the Ned Clinic (Ned for “no evidence of disease”), to support prostate cancer survivors.Methods: We applied the non-adoption, abandonment, scale-up, spread and sustainability complexity assessment tool (NASSS-CAT) to outline implementation complexities at four cancer centres across Canada. We uncovered underlying factors that contribute to or explain implementation.Results: Factors identified included: service interruptions, costing structure, user experience (acceptability); patient referral, overscheduling, incentivization, timing (appropriateness); competing institutional changes, misaligned value proposition, and requisite digital literacy (adoption). Solutions and changes made that carried into the trial included agile development, shifting responsibilities (e.g. tech support, clinic-personalized recruitment strategies), increasing in-person socialization of Ned Clinics after COVID-19 lockdowns, and enhanced documentation.Discussion: Implementing new and complex interventions in a complex adaptive system requires an element of trial and error to find what works best. Adaptations between the pilot and trial can compensate for complexity. Ongoing multidisciplinary stakeholder engagement was crucial for project success especially as complexities arose.Conclusion: Our approach has informed how agile adaptations can improve target implementation outcomes and may be transferable to other DHI contexts.
Introduction There is a growing number of lung cancer survivors living longer with complex, ongoing needs. This paper describes NIH-funded survivorship research with lung cancer survivor populations.Methods Research grants focused on survivorship for people with lung cancer that were newly funded during Fiscal Years 2017–2024 were identified using a text mining algorithm from the NIH Research, Condition, and Disease Categorization (RCDC) system with survivorship-relevant terms. Included grants were double coded to extract study characteristics, population, and specific study focus.Results A total of 33 grants were included in this portfolio review, representing 3.8% of the overall survivorship portfolio. Survivorship research areas included care delivery (30.3%), late- or long-term effects (27.3%), and acute psychosocial or physiological toxicities (24.2%). None of the grants focused on financial impact. Specific populations of lung cancer survivors included people living with advanced lung cancer (18.2%), older adults (15.2%), and racial and ethnic minority survivors (15.2%).Conclusions There is a further need to study lung cancer survivors living in rural areas, long-term survivors, survivors from sexual and gender minority populations, and lung cancer caregivers. Research focused on improving health equity for lung cancer survivors who experience disparities is also critical to ensure improved health outcomes.
