The acceptability of exercise prehabilitation before cancer surgery among patients, family members and health professionals: a mixed methods evaluation.

PURPOSE: Exercise prehabilitation aims to increase preoperative fitness, reduce post-operative complications, and improve health-related quality of life. For prehabilitation to work, access to an effective programme which is acceptable to stakeholders is vital. The aim was to explore acceptability of exercise prehabilitation before cancer surgery among key stakeholders specifically patients, family members and healthcare providers. METHODS: A mixed-methods approach (questionnaire and semi-structured interview) underpinned by the Theoretical Framework of Acceptability was utilised. Composite acceptability score, (summation of acceptability constructs and a single-item overall acceptability construct), and median of each construct was calculated. Correlation analysis between the single-item overall acceptability and each construct was completed. Qualitative data was analysed using deductive and inductive thematic analysis. RESULTS: 244 participants completed the questionnaire and n=31 completed interviews. Composite acceptability was comparable between groups (p=0.466). Four constructs positively correlated with overall acceptability: affective attitude (r=0.453), self-efficacy (r=0.399), ethicality (r=0.298) and intervention coherence (r=0.281). Qualitative data confirmed positive feelings, citing psychological benefits including a sense of control. Participants felt flexible prehabilitation program would be suitable for everyone, identifying barriers and facilitators to reduce burden. CONCLUSION: Exercise prehabilitation is highly acceptable to key stakeholders. Despite some burden, it is a worthwhile and effective intervention. Stakeholders understand its purpose, are confident in patients' ability to participate, and regard it is an important intervention contributing to patients' psychological and physical wellbeing. IMPLICATIONS: •Introduction should be comprehensively designed and clearly presented, providing appropriate information and opportunity for questions. •Programmes should be patient-centred, designed to overcome barriers and address patients' specific needs and goals. •Service must be appropriately resourced with a clear referral-pathway.

Demographic and Clinical Factors Associated With Health-Related Quality-of-Life Profiles Among Prostate Cancer Survivors.

PURPOSE: Our purpose was to describe the prevalence and predictors of symptom and function clusters related to physical, emotional, and social components of general health-related quality of life (HRQOL) in a population-based sample of prostate cancer (PCa) survivors. METHODS: Participants (N = 1,162) completed a baseline survey at a median of 9 months after diagnosis to ascertain the co-occurrence of eight symptom and functional domains that are common across all cancers and not treatment-specific. We used latent profile analysis (LPA) to identify subgroup profiles of survivors with low, moderate, or high HRQOL levels. Multinomial logistic regression models were used to identify clinical and sociodemographic factors associated with survivors' membership in the low versus moderate or high HRQOL profile. RESULTS: The LPA identified 16% of survivors who were categorized in the low HRQOL profile at baseline, indicative of the highest symptom burden and lowest functioning. Factors related to survivors' membership in the low versus higher HRQOL profile groups included less than age 65 years at diagnosis, identifying as non-Hispanic Black race, not working, being a former versus never smoker, systemic therapy, less companionship, more comorbidities, lower health care financial well-being, or less spirituality. Several factors remained associated with remaining in the low versus higher HRQOL profiles on the follow-up survey (n = 699), including younger age, Black race, comorbidity, and lower financial and spiritual well-being. CONCLUSION: About one of six PCa survivors experienced elevated physical and psychosocial symptoms that were independent of local curative therapy, but with younger age, race, comorbidity, and lower financial and spiritual well-being as stable risk factors for poor HRQOL over time.

Six-Month Pilot Testing of a Digital Health Tool to Support Effective Self-Care in People With Heart Failure: Mixed Methods Study.

BACKGROUND: Digital tools may support people to self-manage their heart failure (HF). Having previously outlined the human-centered design development of a digital tool to support self-care of HF, the next step was to pilot the tool over a period of time to establish people's acceptance of it in practice. OBJECTIVE: This study aims to conduct an observational pilot study to examine the usability, adherence, and feasibility of a digital health tool for HF within the Irish health care system. METHODS: A total of 19 participants with HF were provided with a digital tool comprising a mobile app and the Fitbit Charge 4 and Aria Air smart scales for a period of 6 months. Changes to their self-care were assessed before and after the study with the 9-item European HF Self-care Behavior Scale (EHFScBS) and the Minnesota Living with HF Questionnaire (MLwHFQ) using a Wilcoxon signed rank test. After the study, 3 usability questionnaires were implemented and descriptively analyzed: the System Usability Scale (SUS), Wearable Technology Motivation Scale (WTMS), and Comfort Rating Scale (CRS). Participants also undertook a semistructured interview regarding their experiences with the digital tool. Interviews were analyzed deductively using the Theoretical Domains Framework. RESULTS: Participants wore their devices for an average of 86.2% of the days in the 6-month testing period ranging from 40.6% to 98%. Although improvements in the EHFScBS and MLwHFQ were seen, these changes were not significant (P=.10 and P=.70, respectively, where P>.03, after a Bonferroni correction). SUS results suggest that the usability of this system was not acceptable with a median score of 58.8 (IQR 55.0-60.0; range 45.0-67.5). Participants demonstrated a strong motivation to use the system according to the WTMS (median 6.0, IQR 5.0-7.0; range 1.0-7.0), whereas the Fitbit was considered very comfortable as demonstrated by the low CRS results (median 0.0, IQR 0.0-0.0; range 0.0-2.0). According to participant interviews, the digital tool supported self-management through increased knowledge, improved awareness, decision-making, and confidence in their own data, and improving their social support through a feeling of comfort in being watched. CONCLUSIONS: The digital health tool demonstrated high levels of adherence and acceptance among participants. Although the SUS results suggest low usability, this may be explained by participants uncertainty that they were using it fully, rather than it being unusable, especially given the experiences documented in their interviews. The digital tool targeted key self-management behaviors and feelings of social support. However, a number of changes to the tool, and the health service, are required before it can be implemented at scale. A full-scale feasibility trial conducted at a wider level is required to fully determine its potential effectiveness and wider implementation needs.

Digitising diabetes education for a safer Ramadan: Design, delivery, and evaluation of massive open online courses in Ramadan-focused diabetes education.

AIMS: Ramadan-focused diabetes education is critical to facilitate safer Ramadan fasting amongst Muslim people living with diabetes. We present the design, delivery, and evaluation of two parallel massive open online courses (MOOCs) in Ramadan-focused diabetes education for people with diabetes and HCPs. METHODS: Two Ramadan-focused diabetes education MOOCs were developed and delivered for Ramadan 2023: one for HCPs in English, and another for people with diabetes in English, Arabic and Malay. A user-centred iterative design process was adopted, informed by user feedback from a 2022 pilot MOOC. Evaluation comprised a mixed-methods evaluation of pre- and post-course user surveys. RESULTS: The platform was utilised by people with diabetes and their family, friends and healthcare professionals. Overall, a total of 1531 users registered for the platform from 50 countries, 809 started a course with a 48% subsequent completion rate among course starters. Qualitative analysis showed users found the course a user-friendly and authoritative information source. In the HCP MOOC, users reported improved post-MOOC Ramadan awareness, associated diabetes knowledge and ability to assess and advise patients in relation to their diabetes during Ramadan (p<0.01). CONCLUSIONS: We demonstrate the potential of MOOCs to deliver culturally tailored, high-quality, scalable, multilingual Ramadan-focused diabetes education to HCPs and people with diabetes.

Relationship between area-level socioeconomic status and health-related quality of life among cancer survivors.

Area-level socioeconomic status (SES) impacts cancer outcomes, such as stage at diagnosis, treatments received, and mortality. However, less is known about the relationship between area-level SES and health-related quality of life (HRQOL) for cancer survivors. To assess the additive value of area-level SES data and the relative contribution of area- and individual-level SES for estimating cancer survivors' HRQOL, we conducted a secondary analysis of data from a population-based survey study of cancer survivors (the Measuring Your Health [MY-Health] Study). Multilevel multinomial logistic regression models were used to examine the relationships between individual-level SES, area-level SES as measured by the Centers for Disease Control and Prevention's Social Vulnerability Index, and HRQOL group membership (high, average, low, or very low HRQOL). Area-level SES did not significantly increase model estimation accuracy compared to models using only individual-level SES. However, area-level SES could be an appropriate proxy when the individual-level SES is missing.

Health-related quality of life by race, ethnicity, and country of origin among cancer survivors.

BACKGROUND: Typical cancer research studies of health-related quality of life (HRQOL) in the United States do not include country of origin when examining race and ethnic group differences. This population-based, cross-sectional study used an innovative methodology to examine how self-reported racial and ethnic groups, by country of origin, report differential HRQOL experiences after adjusting for clinical and demographic characteristics, including socioeconomic status. METHODS: Recruited from 4 cancer registries in California, Louisiana, and New Jersey, cancer survivors completed Patient-Reported Outcomes Measurement Information System measures of fatigue, pain interference, anxiety, depression, sleep disturbance, physical function, ability to participate in social roles, and cognitive function. Latent profile analysis clustered survivors in HRQOL clusters based on including all the Patient-Reported Outcomes Measurement Information System domains. RESULTS: The 5366 participants (60% female; 40% male; average age of 59.8 years) included 17% Asian, 18% Black, 21% Hispanic, and 41% White survivors. Survivors were grouped into 4 clusters: high HRQOL (26%), average HRQOL (34%), low HRQOL (29%), and very low HRQOL (11%). Among many differences by race, ethnicity, and country of origin, Caribbean cancer survivors were more likely to be in the very low HRQOL cluster (odds ratio = 2.67, 95% confidence interval = 1.31 to 5.43) compared with non-Hispanic White survivors. Similarly, American Indian and Alaska Native, Cuban, Dominican, and Puerto Rican cancer survivors had relatively high percentages in the very low HRQOL cluster. CONCLUSIONS: This study found statistically significant differences in HRQOL experience by race, ethnicity, and country of origin, even after adjusting for social determinants of health. These findings inform future HRQOL research to include these self-reported factors.

Human-Centered Design of a Digital Health Tool to Promote Effective Self-care in Patients With Heart Failure: Mixed Methods Study.

BACKGROUND: Effective self-care is an important factor in the successful management of patients with heart failure (HF). Despite the importance of self-care, most patients with HF are not adequately taught the wide range of skills required to become proficient in self-care. Digital health technology (DHT) may provide a novel solution to support patients at home in effective self-care, with the view to enhancing the quality of life and ultimately improving patient outcomes. However, many of the solutions developed to date have failed to consider users' perspectives at the point of design, resulting in poor effectiveness. Leveraging a human-centered design (HCD) approach to the development of DHTs may lead to the successful promotion of self-care behaviors in patients with HF. OBJECTIVE: This study aimed to outline the HCD, development, and evaluation process of a DHT designed to promote effective self-care in patients with HF. METHODS: A design thinking approach within the HCD framework was undertaken, as described in the International Organization for Standardization 9241-210:2019 regulations, using a 5-step process: empathize, ideate, design, develop, and test. Patients with HF were involved throughout the design and evaluation of the system. The designed system was grounded in behavior change theory using the Theoretical Domains Framework and included behavior change techniques. Mixed methods were used to evaluate the DHT during the testing phase. RESULTS: Steps 1 to 3 of the process resulted in a set of evidence- and user-informed design requirements that were carried forward into the iterative development of a version 1 system. A cross-platform (iOS and Android) mobile app integrated with Fitbit activity trackers and smart scales was developed. A 2-week user testing phase highlighted the ease of use of the system, with patients demonstrating excellent adherence. Qualitative analysis of semistructured interviews identified the early potential for the system to positively influence self-care. Specifically, users perceived that the system increased their confidence and motivation to engage in key self-care behaviors, provided them with skills and knowledge that made them more aware of the importance of self-care behaviors, and might facilitate timely help seeking. CONCLUSIONS: The use of an HCD methodology in this research has resulted in the development of a DHT that may engage patients with HF and potentially affect their self-care behaviors. This comprehensive work lays the groundwork for further development and evaluation of this solution before its implementation in health care systems. A detailed description of the HCD process used in this research will help guide the development and evaluation of future DHTs across a range of disease use cases.

The prevalence and risk of symptom and function clusters in colorectal cancer survivors.

PURPOSE: Our purpose was to describe the prevalence and predictors of symptom and function clusters in a diverse cohort of colorectal cancer survivors. METHODS: We used data from a cohort of 909 adult colorectal cancer survivors. Participants were surveyed at a median of 9 months after diagnosis to ascertain the co-occurrence of eight distinct symptom and functional domains. We used factor analysis to identify co-occurring domains and latent profile analysis (LPA) to identify subgroups of survivors with different symptom and function clusters. Multinomial logistic regression models were used to identify risk/protective factors. RESULTS: Factor analysis demonstrated a single underlying factor structure that included all eight health domains with depression and anxiety highly correlated (r = 0.87). The LPA identified three symptom and function clusters, with 30% of survivors in the low health-related quality of life (HRQOL) profile having the highest symptom burden and lowest functioning. In multivariable models, survivors more likely to be in the low HRQOL profile included being non-White, female, those with a history of cardiac or mental health conditions, and chemotherapy recipients. Survivors less likely to be in the low HRQOL profile included those with older age, greater financial well-being, and more spirituality. CONCLUSION: Nearly one-third of colorectal cancer survivors experienced a cluster of physical and psychosocial symptoms that co-occur with clinically relevant deficits in function. IMPLICATIONS FOR CANCER SURVIVORS: Improving the identification of risk factors for having the highest symptom and lowest function profile can inform the development of clinical interventions to mitigate their adverse impact on cancer survivors' HRQOL.

Risk, rights and deservedness: Navigating the tensions of Gladue, Fetal Alcohol Spectrum Disorder and settler colonialism in Canadian courts.

In 2008, the Truth and Reconciliation Commission of Canada engaged in a public project of national reconciliation to address the ongoing impacts of settler colonialism including the disproportionate number of Indigenous adults and youth who are held in remand facilities awaiting trial or sentence as well as those who are convicted and sentenced to periods of incarceration. Efforts to further reconciliation by reducing Indigenous incarceration rates have relied largely on the courts and their application of a sentencing principle rooted in the Supreme Court's ruling in R. v. Gladue [1999] 1 SCR 688. In this article, we argue that the Gladue sentencing principle is being fundamentally undermined in the courts through risk models that actively displace the very context that Gladue reports seek to illuminate. Included in the analysis are the compounding impacts facing Indigenous individuals struggling with a complex disability like Fetal Alcohol Spectrum Disorder.

Young women's fertility knowledge: partial knowledge and implications for contraceptive risk-taking.

BACKGROUND: There is a lack of research on young women's fertility knowledge and awareness. This has implications for contraceptive risk-taking, including the use of emergency hormonal contraception (EHC). By drawing on two research studies, this article shows how greater fertility knowledge could benefit young women in terms of pregnancy prevention. METHODS: We draw on two qualitative research studies ('fertility study' and 'abortion study') resulting in a composite sample of 46 interviews with women aged 16-24 years. Focused secondary analysis was undertaken looking specifically at fertility knowledge in relation to contraceptive behaviour. FINDINGS: A lack of accurate knowledge about the menstrual cycle was evident in two ways. Young women drew conclusions about their invulnerability to pregnancy if previous unprotected sexual intercourse (UPSI) had not resulted in pregnancy. Additionally, although participants were aware of EHC, there was no awareness of when it might fail other than after a certain time limit. CONCLUSIONS: Young women would benefit from a more nuanced understanding of fertility. Episodes of UPSI that do not result in pregnancy can encourage a belief that 'it won't happen to me', and this has implications for taking chances with contraception. Partial knowledge about the effectiveness of EHC may also lead to unintended pregnancy. Calculating the number of hours following UPSI generates overreliance on what is only one of the factors determining the effectiveness of EHC. Information regarding the link between EHC and failure rates near the day of ovulation needs to be more widely publicised.

Oral Complications of Chronic Graft-Versus-Host Disease.

The increasing clinical indications for hematopoietic stem cell transplantation (HSCT) and improved clinical care throughout and following HSCT have led to not only long-term survival but also to an increasing incidence and prevalence of graft-versus-host disease (GVHD). Chronic GVHD (cGVHD) affects almost 50% of adult patients post-HSCT, with increasing incidence in pediatric patients as well. Oral cGVHD specifically has a reported prevalence ranging from 45% to 83% in patients who develop cGVHD and is more extensive in adult patients than in children. Oral cGVHD affects patients through clinically significant oral symptoms that may lead to significantly decreased caloric intake, oral infections, and increased health service utilization, and may thus affect overall health and survival. The most commonly used therapy for mucosal involvement of oral cGVHD is topical high-dose and ultra-high potency corticosteroids, and calcineurin inhibitors. This review of oral complications of cGVHD presents the clinical significance of oral cGVHD to HSCT survivors, our current understanding of the pathobiology of oral cGVHD and gaps in this evidence, and the global targeted interdisciplinary clinical research efforts, including the National Institutes of Health Consensus Development Project on Criteria for Clinical Trials in Chronic Graft-versus-Host Disease. Current challenges regarding the management of oral cGVHD and strategies to advance our scientific understanding of this clinically significant chronic oral disease are presented.

Mentoring students engaging in scholarly projects and dissertations in doctoral nursing programs.

BACKGROUND: Doctor of Nursing Practice (DNP) programs in the US have grown exponentially, outnumbering Doctor of Philosophy (PhD) in Nursing programs. Faculty are mentoring increasing numbers of students on DNP projects or PhD dissertations. PURPOSE: This descriptive study explored faculty characteristics and examined support, engagement, and outcomes of American Association of Colleges of Nursing member nursing faculty mentoring student DNP projects or PhD dissertations. METHOD: A researcher-developed survey tool was emailed to 550 Deans and Program Directors of AACN doctoral programs for distribution to their doctoral faculty. Survey data were analyzed using descriptive statistics. FINDINGS: 177 DNP and 53 PhD (N=230) program surveys were completed. Faculty described challenges in the mentoring role including: time constraints, workload allocation, resources, faculty role preparation, student readiness, and variability in student outcomes. CONCLUSIONS: Additional dialogue and consensus is required to promote mentoring of students in nursing doctoral programs to ensure rigor of scholarly outcomes.

Systematic review of basic oral care for the management of oral mucositis in cancer patients and clinical practice guidelines.

PURPOSE: The aim of this study was to update the clinical practice guidelines for the use of basic oral care (BOC) interventions for the prevention and/or treatment of oral mucositis (OM). METHODS: A systematic review was conducted by the Mucositis Study Group of the Multinational Association of Supportive Care in Cancer/International Society for Oral Oncology (MASCC/ISOO). The body of evidence for each intervention in each cancer treatment setting was assigned an evidence level. The findings were added to the database used to develop the 2013 MASCC/ISOO clinical practice guidelines. Based on the evidence level, one of the following three guideline determinations was possible: Recommendation, Suggestion, No guideline possible. RESULTS: A total of 17 new papers across six interventions were examined and merged with a previous database. Based on the literature, the following guidelines were possible. The panel suggests that the implementation of multi-agent combination oral care protocols is beneficial for the prevention of OM during chemotherapy, head and neck (H&N) radiation therapy (RT), and hematopoietic stem cell transplantation (Level of Evidence III). The panel suggests that chlorhexidine not be used to prevent OM in patients undergoing H&N RT (Level of Evidence III). No guideline was possible for professional oral care, patient education, saline, and sodium bicarbonate, and expert opinion complemented these guidelines. CONCLUSIONS: The evidence supports the use of multi-agent combination oral care protocols in the specific populations listed above. Additional well-designed research is needed on the other BOC interventions prior to guideline formulation.

Contraception for adolescents with disabilities: taking control of periods, cycles and conditions.

The onset of puberty, periods and sexual relationships can be difficult for adolescents and parents. Adolescents with disabilities face a wide range of additional challenges (physical, mental, social and intellectual), which may impact the quality of their lives and those of their families and carers. Research on the use of contraception in young women with disabilities is limited, and clinicians have little practical guidance for best practice. This review article aims to summarise and assess the evidence and guidance for the use of contraception in this group, particularly with regard to management of menstrual and cyclical problems. Multidisciplinary teamwork is important for recognising and addressing the concerns of patients and their carers effectively. The legal and ethical considerations are also highlighted here, as this group of adolescents is highly vulnerable to sexual exploitation and abuse.

Delivering Digital Drugs: An Exploratory Study of the Digitalisation of Supply and Use of Medicines.

Medicines' supply and use is incresingly reliant on digital means and information. This poster presents exploratory research over five episodes of digitalisation of medicines across the supply network. We 'follow the drug' through this emerging field, providing an initial map of this new territory.

The British National Formulary: Checking, medicines and clinicians.

The British National Formulary underpins the way medical practice is made safe in the UK. Its move from book to digital product has been identified as welcome but with problematic aspects. This chapter describes and investigates the current use of the formulary in order to examine how a rapid, well-targeted project is designed and executed.