Neurodegenerative disease pathways are perturbed in patients with cancer who self-report cognitive changes and anxiety: A pathway impact analysis.

BACKGROUND: Cancer-related cognitive impairment (CRCI) and anxiety co-occur in patients with cancer. Little is known about mechanisms for the co-occurrence of these two symptoms. The purposes of this secondary analysis were to evaluate for perturbed pathways associated with the co-occurrence of self-reported CRCI and anxiety in patients with low versus high levels of these two symptoms and to identify potential mechanisms for the co-occurrence of CRCI and anxiety using biological processes common across any perturbed neurodegenerative disease pathways. METHODS: Patients completed the Attentional Function Index and the Spielberger State-Trait Anxiety Inventory six times over two cycles of chemotherapy. Based on findings from a previous latent profile analysis, patients were grouped into none versus both high levels of these symptoms. Gene expression was quantified, and pathway impact analyses were performed. Signaling pathways for evaluation were defined with the Kyoto Encyclopedia of Genes and Genomes database. RESULTS: A total of 451 patients had data available for analysis. Approximately 85.0% of patients were in the none class and 15.0% were in the both high class. Pathway impact analyses identified five perturbed pathways related to neurodegenerative diseases (i.e., amyotrophic lateral sclerosis, Huntington disease, Parkinson disease, prion disease, and pathways of neurodegeneration-multiple diseases). Apoptosis, mitochondrial dysfunction, oxidative stress, and endoplasmic reticulum stress were common biological processes across these pathways. CONCLUSIONS: This study is the first to describe perturbations in neurodegenerative disease pathways associated with CRCI and anxiety in patients receiving chemotherapy. These findings provide new insights into potential targets for the development of mechanistically based interventions.

Patient perceptions of altering chemotherapy treatment due to peripheral neuropathy.

PURPOSE: Clinical practice guidelines recommend altering neurotoxic chemotherapy treatment in patients experiencing intolerable chemotherapy-induced peripheral neuropathy (CIPN). The primary objective of this survey was to understand patient's perspectives on altering neurotoxic chemotherapy treatment, including their perceptions of the benefits of preventing irreversible CIPN and the risks of reducing treatment efficacy. METHODS: A cross-sectional online survey was distributed via social networks to patients who were currently receiving or had previously received neurotoxic chemotherapy for cancer. Survey results were analyzed using descriptive statistics and qualitative analysis. RESULTS: Following data cleaning, 447 participants were included in the analysis. The median age was 57 years, 93% were white, and most were from the UK (53%) or USA (38%). Most participants who were currently or recently treated expected some CIPN symptom resolution (86%), but 45% of those who had completed treatment more than a year ago reported experiencing no symptom resolution. Participants reported that they would discontinue chemotherapy treatment for less severe CIPN if they knew their symptoms would be permanent than if symptoms would disappear after treatment. Most patients stated that the decision to alter chemotherapy or not was usually made collaboratively between the patient and their treating clinician (61%). The most common reason participants were reluctant to talk with their clinician about CIPN was fear that treatment would be altered. Participants noted a need for improved understanding of CIPN symptoms and their permanence, better patient education relating to CIPN prior to and after treatment, and greater clinician understanding and empathy around CIPN. CONCLUSIONS: This survey highlights the importance of shared decision-making, including a consideration of both the long-term benefits and risks of altering neurotoxic chemotherapy treatment due to CIPN. Additional work is needed to develop decision aids and other communication tools that can be used to improve shared decision making and help patients with cancer achieve their treatment goals.

An Evaluation of the Multifactorial Model of Cancer-Related Cognitive Impairment.

BACKGROUND: Up to 45% of patients report cancer-related cognitive impairment (CRCI). A variety of characteristics are associated with the occurrence and/or severity of CRCI. However, an important gap in knowledge of risk factors for CRCI is the relative contribution of each factor. The multifactorial model of cancer-related cognitive impairment (MMCRCI) is a conceptual model of CRCI that can be used to evaluate the strength of relationships between various factors and CRCI. OBJECTIVES: The purpose of this study was to use structural regression methods to evaluate the MMCRCI using data from a large sample of outpatients receiving chemotherapy ( n = 1,343). Specifically, the relationships between self-reported CRCI and four MMCRCI concepts (i.e., social determinants of health, patient-specific factors, treatment factors, and co-occurring symptoms) were examined. The goals were to determine how well the four concepts predicted CRCI and determine the relative contribution of each concept to deficits in perceived cognitive function. METHODS: This study is part of a larger, longitudinal study that evaluated the symptom experience of oncology outpatients receiving chemotherapy. Adult patients were diagnosed with breast, gastrointestinal, gynecological, or lung cancer; had received chemotherapy within the preceding 4 weeks; were scheduled to receive at least two additional cycles of chemotherapy; were able to read, write, and understand English; and gave written informed consent. Self-reported CRCI was assessed using the attentional function index. Available study data were used to define the latent variables. RESULTS: On average, patients were 57 years of age, college educated, and with a mean Karnofsky Performance Status score of 80. Of the four concepts evaluated, whereas co-occurring symptoms explained the largest amount of variance in CRCI, treatment factors explained the smallest amount of variance. A simultaneous structural regression model that estimated the joint effect of the four exogenous latent variables on the CRCI latent variable was not significant. DISCUSSION: These findings suggest that testing individual components of the MMCRCI may provide useful information on the relationships among various risk factors, as well as refinements of the model. In terms of risk factors for CRCI, co-occurring symptoms may be more significant than treatment factors, patient-specific factors, and/or social determinants of health in patients receiving chemotherapy.

Psychosocial and supportive care needs of individuals with advanced myeloma.

Purpose: The purpose of this qualitative study is to understand, from the patient's perspective, their experience of living with advanced multiple myeloma, the psychosocial impact, and needs for support in managing and adapting to this illness. Methods: An interpretive descriptive approach was used. Individual semi-structured telephone interviews were conducted with each participant, which focused on eliciting their descriptions of psychosocial issues and concerns, as well as the supports they use for coping with cancer. Transcripts were analyzed using interpretive description, resulting in the generation of common themes that represented the data. Results: The sample comprised twelve adults with a diagnosis of advanced multiple myeloma who had undergone at least three lines of treatment or were transfusion dependent. All participants were receiving ambulatory care for their myeloma in Toronto, Ontario, Canada. Four themes were generated: (1) confusion about the diagnosis and treatment options; (2) challenges in finding relevant information; (3) dealing with the chronicity of treatment side effects; (4) social support as critical for coping with the life-threat of multiple myeloma. Conclusion: Findings suggest that the psychosocial impact of living with advanced multiple myeloma is greatly impacted by one's ability to understand the complexities of the diagnosis and access supports to cope with its physical and emotional consequences. Clinical interventions specifically tailored to meeting the information and support needs of this population are needed.

The effect of mind-body exercise on cognitive function in cancer survivors: A systematic review.

Objective: Cancer-related cognitive impairments experienced by cancer survivors cause many to seek non-pharmacological intereventions to manage these symptoms. The aim of this systematic review was to evaluate the effects of one such intervention, mindbody exercise (MBE), on cognitive function in cancer survivors. Design: Searches for relevant studies were conducted in four electronic databases, including PubMed, Embase, Scopus, and Web of Science. The Joanna Briggs Institute and Jadad scales were utilized to evaluate the quality of the selected studies. Results: Eleven studies including 1,032 participants, published between 2006 and 2019, were selected for review based on specific inclusion criteria. Our results indicated that interventions including, yoga, tai chi, and qigong may improve objective and subjective cognitive function in cancer survivors. Conclusion: Cancer survivors experiencing cognitive symptoms may benefit from participation in MBE. Adequately powered randomized controlled trials are required to establish the short- and long-term effects of MBE on cognitive functioning.

Late cognitive outcomes among allogeneic stem cell transplant survivors: follow-up data from a 6-year longitudinal study.

CONTEXT: Survivors of allogeneic hematopoietic stem cell transplantation (alloHCT) may experience cognitive impairment over time post-treatment, but early identification of these individuals is limited. OBJECTIVES: We previously reported a prospective evaluation of cognitive functioning over the first 6 months of alloHCT. Here, we report an extension of this study, with specific aims to (1) evaluate the trajectory of cognitive outcomes over the first 6 years post-alloHCT, and (2) determine the extent to which late cognitive impairment is predicted by earlier impairment. METHODS: Participants completed objective and subjective cognitive measures before alloHCT, and at 100 days, 6 months, and 6 years post-alloHCT. Outcome trajectories were determined using linear mixed effects models. Relationships between early and late cognitive impairment were assessed using logistic regression and receiver operator curves. RESULTS: This analysis is based on longitudinal data from 59 participants, of whom 20 provided data at 6-year follow-up. Longitudinal models revealed an overall stability of cognitive outcomes over time, except for psychomotor efficiency/processing speed performance, which significantly improved (p = .049). However, poor learning/memory and cognitive complaints were persistently observed. At 6 years, 40% of relapse-free survivors met the impairment criteria. Impairment at 100 days was associated with impairment 6 years (OR = 20.00, p = .028) and demonstrated good accuracy in classifying those who were impaired and not impaired at 6 years (AUC = .79; 95% CI = .56-1.00). CONCLUSION: Poor cognitive outcomes among long-term alloHCT survivors are associated with cognitive functioning during the early post-treatment period. Early identification of survivors likely to experience poor cognitive outcomes may be possible, enabling timely intervention to mitigate long-term negative impacts.

Patient and clinician perspectives of desired features for a web-based self-management program (icanmanage.ca): exposing patients "hard work" of managing acute cancer.

PURPOSE: People with cancer benefit from self-management support, but report limitations in the type/amount of support they receive from healthcare professionals during cancer treatment. To intervene in this critical period, our team is developing a web-based self-management system, called I Can Manage Cancer (ICMC). The purpose of this paper is to report patient and clinician perspectives on the preferred features and functions in a self-management system that informed the development of the ICMC program. METHODS: We used descriptive qualitative methods, conducting interviews with people diagnosed with cancer (n = 16) and focus groups with cancer clinicians (n = 19). Data were thematically analyzed using the NVivo qualitative software. FINDINGS: People with cancer describe engaging in hard work when employing cancer self-management. Our findings lend insight into features and functions they deem vital in a self-management system to support this work. Based on patient and clinician accounts, we developed three themes describing specific content and design features for the ICMC program to support self-management needs of people with cancer during the acute phase of treatment: (1) being able to connect, observe, and learn from others; (2) the ability to tailor and customize information; and (3) the capacity to track symptoms over time. Clinicians and patients emphasized the need to optimize all available resources to support people with cancer as they engage in the work to manage their diagnosis. CONCLUSIONS: Our findings describe the how peoples' cancer experiences and the gaps in self-management care can be enhanced by specific features and functions within the ICMC.

Cancer-related cognitive impairment in patients with non-central nervous system malignancies: an overview for oncology providers from the MASCC Neurological Complications Study Group.

Cancer-related cognitive impairment (CRCI) is commonly experienced by individuals with non-central nervous system cancers throughout the disease and treatment trajectory. CRCI can have a substantial impact on the functional ability and quality of life of patients and their families. To mitigate the impact, oncology providers must know how to identify, assess, and educate patients and caregivers. The objective of this review is to provide oncology clinicians with an overview of CRCI in the context of adults with non-central nervous system cancers, with a particular focus on current approaches in its identification, assessment, and management.

Shared-Care in Complex Malignant Hematology: An Integrative Review Using the RE-AIM Evaluation Framework.

Complex malignant hematology (CMH) shared-care programs have been established to support patients with access to care closer to home. This integrative review examined what is known about CMH shared-care using the RE-AIM evaluation framework. We searched five electronic databases for articles published until 16 January 2024. Articles were included if they were qualitative or quantitative studies, reviews or discussion papers, and reported on an experience with shared-care (defined as a reciprocal, ongoing patient-sharing relationship between a specialist centre and community hospital) for patients with hematological malignancies, and examined one or more aspects of the RE-AIM framework. The search yielded 6523 articles; 10 articles describing eight shared-care experiences. Indicators of reach were reported for 65% of the programs, and emphasized some patient eligibility criteria. Effectiveness indicators were reported for 28% of programs, and suggested favourable survival outcomes within a shared-care model; however, health system impact and quality of life studies were lacking. Indicators of adoption and implementation were reported for 56% and 42% of programs, respectively, and emphasized multidisciplinary teams, infrastructure support, and communication strategies. Maintenance was not reported. Common elements contribute to the implementation of existing CMH shared-care programs; however, a formal evaluation remains an area of need.

Experience of Care Among Adults With Acute Leukemia Near the End of Life: A Scoping Review.

Background: Acute leukemia is a cancer of the blood and bone marrow with a high symptom burden and a high mortality rate in adults. The quality of end-of-life care among this patient population is deemed to be low based on health care administrative data, though the patient experience is not included in this evaluation. Objective: This scoping review aims at exploring and mapping the current research literature on the experience of care among adults with incurable acute leukemia near the end of life. Design: The JBI framework guided our scoping review, and the protocol was prospectively registered in the Open Science Forum. Results: A total of 5661 unique articles were screened for title and abstract, and 44 were selected for full text. After a manual search, five studies published in seven articles were selected for data extraction, including three qualitative and two quantitative studies. Two studies used family caregivers as patient proxies, two studies engaged patients directly, whereas one study obtained data from patients and family caregivers. Patient care in acute settings was reported in all studies, with most patients dying in acute care settings. Patients and family caregivers often valued an open and honest approach, with sufficient time for dialogue with their providers. Discussions about prognosis, palliative care, and hospice care were often late or incomplete. The medicalization of end-of-life care, including intensive care unit admissions and invasive medical procedures, were viewed as the norm by some providers, though perceived as distressing for both patients and their loved ones. Conclusions: Adults with acute leukemia face significant challenges in accessing high-quality end-of-life care brought about by the complex nature of their disease and its treatment. A systematic exploration of the end-of-life experience among these patients through direct patient engagement or by way of patient reporting proxies is needed.

Cognitive Symptoms Across Diverse Cancers.

Importance: Psychosocial health services for adults with cancer should include support for cognitive symptoms and symptom clusters. Objective: To characterize the frequency and severity of cognitive symptoms and to identify demographic and clinical risk factors associated with moderate to severe cognitive symptoms among outpatient adults with cancer seeking psychosocial support. Design, Setting, and Participants: This cross-sectional study analyzed data from routine patient-reported symptom screening during clinic appointments at the Princess Margaret Cancer Centre in Toronto, Canada, between January 1, 2013, and December 31, 2019. Participants were outpatient adults (aged ≥18 years) with diverse cancer diagnoses who endorsed interest in receiving psychosocial support from a health care team member. Data analysis was performed from April 2020 to June 2024. Main Outcomes and Measures: The presence and severity of cognitive symptoms as self-rated by participants were characterized across 12 cancer types: brain or central nervous system (CNS), breast, gastrointestinal, head and neck, gynecological, thyroid, lung and bronchus, sarcoma, genitourinary, melanoma, hematological, and all other cancers. Multivariable logistic regression was used to explore the associations between demographic, clinical, and symptom factors and moderate to severe cognitive symptoms. Results: Across the sample of 5078 respondents (2820 females [55.5%]; mean [SD] age at time of survey, 56.0 [14.1] years) requesting psychosocial support, 3480 (68.5%) reported cognitive symptoms of any severity, ranging from 59.5% in sarcoma to 86.5% in brain or CNS cancer. Moderate to severe cognitive symptoms were reported by 1544 patients (30.4%), with the proportions being 51.3% for patients with brain or CNS, 37.0% for breast, 36.2% for thyroid, 30.9% for melanoma, 29.6% for head and neck, 28.3% for gastrointestinal, 28.2% for hematological, 28.1% for gynecological, 24.9% for lung and bronchus, 24.9% for sarcoma, 21.0% for genitourinary, and 26.8% for all other cancers. Across the entire sample, moderate to severe cognitive symptoms were associated with recurrence or progression involving the CNS (odds ratio [OR], 2.62; 95% CI, 1.80-3.81), depression (OR, 1.92; 95% CI, 1.59-2.31), tiredness (OR, 1.82; 95% CI, 1.52-2.19), drowsiness (OR, 1.64; 95% CI, 1.39-1.93), anxiety (OR, 1.57; 95% CI, 1.30-1.89), shortness of breath (OR, 1.38; 95% CI, 1.16-1.61), female sex (OR, 1.33; 95% CI, 1.14-1.56), first-line chemotherapy received (OR, 1.22; 95% CI, 1.05-1.41), and metastatic disease at diagnosis (OR, 0.74; 95% CI, 0.61-0.89). Within individual cancer types, tiredness and depression were consistently associated with moderate to severe cognitive symptoms. Conclusions and Relevance: This cross-sectional study found that cognitive symptoms were frequently reported by patients across a wide range of cancer types; higher severity of cognitive symptoms was consistently associated with higher symptom burden. The findings could be used to inform decision-making regarding access to cognitive screening, assessment, and supportive care in outpatient oncology clinics.

Late effects after allogeneic haematopoietic cell transplantation in children and adolescents with non-malignant disorders: a retrospective cohort study.

BACKGROUND: Continued advances in haematopoietic cell transplantation (HCT) for children with non-malignant diseases (NMDs) have led to a growing population of survivors in whom late occurring toxic effects remain a challenge. We investigated the incidence of and risk factors for post-transplant toxicities in a contemporary cohort of children and adolescents undergoing HCT for NMDs. METHODS: In this retrospective cohort study, we extracted data from the Center for International Blood and Marrow Transplantation Research (CIBMTR) database to analyse timing and incidence of effects and risk factors associated with late effects of HCT for treatment of NMDs at age 21 years or younger. Late effects of interest were avascular necrosis, cataracts, congestive heart failure, myocardial infarction, diabetes, gonadal dysfunction, growth hormone deficiency, hypothyroidism, renal failure requiring dialysis, and neurological events (stroke and seizure). Cumulative incidence of each late effect was calculated at 5 years and 7 years after HCT. Risk factors were evaluated in Cox proportional hazards regression analyses. Main exposures were primary NMD, age, sex, ethnicity and race, insurance, donor and graft type, myoablative conditioning, total-body irradiation exposure, graft-versus-host disease (GVHD), and transplant year. Primary outcomes were rates, cumulative incidence probability (95% CI), and risk-factors for organ-specific late effects. FINDINGS: Between Jan 1, 2000, and Dec 31, 2017, 7785 patients aged 21 years or younger underwent HCT. 1995 patients were ineligible or did not consent to be included. 5790 patients from 171 centres were included in the analysis. 3505 (60·5%) of 5790 patients were male and 2285 (39·5%) were female. 2106 (36·4%) patients were White, 771 (13·3%) were Hispanic, and 773 (12·7%) were Black. 1790 (30·9%) patients were non-USA residents. Median age at HCT was 5·5 years (range 0·0-21·0). 1127 (19%) of 5790 patients had one late effect, and 381 (7%) had at least two. At 7 years post-HCT, the cumulative incidence probability was 1·9 (95% CI 1·5-2·3) for cataracts, 4·9 (4·3-5·6) for diabetes, 2·6 (2·1-3·1) for gonadal dysfunction, 3·2 (2·7-3·8) for hypothyroidism, 5·0 (4·4-5·7) for growth disturbance, 8·1 (7·4-8·9) for renal failure, 1·6 (1·3-2·0) for avascular necrosis, 0·6 (0·4-0·8) for congestive heart failure, 0·2 (0·1-0·3) for myocardial infarction, and 9·4 (8·6-10·2) for neurological effects. Age 10 years or older at HCT, unrelated donor source, total-body irradiation, and GVHD were identified as risk factors for long-term effects. INTERPRETATION: The findings highlight the need for, and access to, multidisciplinary and lifelong follow-up for children undergoing HCT for NMDs. As more children undergo treatment with cellular therapies for non-malignant conditions, further analyses of post-transplant data could increasingly guide treatment decisions and subsequent long-term surveillance. FUNDING: National Cancer Institute, National Heart, Lung and Blood Institute, National Institute of Allergy and Infectious Diseases, Health Resources and Services Administration, and Office of Naval Research.

Information needs across time after a hematological cancer diagnosis: A qualitative study of patient and clinician perspectives.

OBJECTIVE: The aim of this study was to characterize the information needs experienced by adult patients across the continuum of their hematological cancer. METHODS: Individual semi-structured telephone interviews were conducted with 28 adults with hematological cancer and 18 clinicians recruited from across Canada and analyzed using interpretive description. RESULTS: Distinct information needs were organized across seven points of the cancer continuum: prior to diagnosis, at diagnosis, prior to treatment, during treatment, after treatment, relapse/non-response, and end of life. Patients' information needs reflected a desire to better understand their current physical and psychosocial circumstances, as well as how to make decisions about their treatment, self-management, and health care. The need to receive information in a preparatory way was relevant across all phases of the cancer continuum. CONCLUSION: Our work contributes an initial approach for providing patient education and counselling for people with hematological cancers, which can be tailored based on individuals' unique characteristics and treatment pathways. PRACTICE IMPLICATIONS: Adults with hematological cancers require information to support decision making over the course of their diagnosis, treatment, and survivorship, but can experience information overwhelm. These findings provide an approach for organizing the delivery of information based on different points of need across the cancer continuum.

The Multifactorial Model of Cancer-Related Cognitive Impairment.

PROBLEM IDENTIFICATION: Cancer-related cognitive impairment (CRCI) is common and is associated with cancer and its treatments. Evidence suggests that the causes are multifactorial, but the field is lacking a comprehensive conceptual model of CRCI to summarize existing knowledge and provide a way to understand and predict causal links, as well as to generate hypotheses. LITERATURE SEARCH: PubMed® and Google Scholar™ were searched, and 130 articles demonstrated several lacking factors needed for a more comprehensive CRCI model. DATA EVALUATION: The new multifactorial model of CRCI includes social determinants of health, patient-specific factors, co-occurring symptoms, treatment factors, and biologic mechanisms. SYNTHESIS: The multifactorial model of CRCI is based on established and emerging evidence. This model is inclusive of all cancer types and associated treatments. IMPLICATIONS FOR NURSING: Although it would be ideal to evaluate all the concepts and components in this model in a comprehensive fashion, investigators with existing datasets could evaluate portions of the model to determine directionality for some of the proposed relationships. The new model can be used to design preclinical and clinical studies of CRCI. Knowledge of the occurrence of CRCI and factors that contribute to this symptom will allow nurses to perform assessments of modifiable and nonmodifiable risk factors.

Development of an eHealth Tool for Capturing and Analyzing the Immune-related Adverse Events (irAEs) in Cancer Treatment.

Introduction: Immunotherapy has revolutionized the treatment of many different types of cancer, but it is associated with a myriad of immune-related adverse events (irAEs). Patient-reported outcome (PRO) measures have been identified as valuable tools for continuously collecting patient-centered data and are frequently used in oncology trials. However, few studies still research an ePRO follow-up approach on patients treated with Immunotherapy, potentially reflecting a lack of support services for this population. Methods: The team co-developed a digital platform (V-Care) using ePROs to create a new follow-up pathway for cancer patients receiving immunotherapy. To operationalize the first 3 phases of the CeHRes roadmap, we employed multiple methods that were integrated throughout the development process, rather than being performed in a linear fashion. The teams employed an agile approach in a dynamic and iterative manner, engaging key stakeholders throughout the process. Results: The development of the application was categorized into 2 phases: "user interface" (UI) and "user experience" (UX) designs. In the first phase, the pages of the application were segmented into general categories, and feedback from all stakeholders was received and used to modify the application. In phase 2, mock-up pages were developed and sent to the Figma website. Moreover, the Android Package Kit (APK) of the application was installed and tested multiple times on a mobile phone to proactively detect and fix any errors. After resolving some technical issues and adjusting errors on the Android version to improve the user experience, the iOS version of the application was developed. Discussion: By incorporating the latest technological developments, V-Care has enabled cancer patients to have access to more comprehensive and personalized care, allowing them to better manage their condition and be better informed about their health decisions. These advances have also enabled healthcare professionals to be better equipped with the knowledge and tools to provide more effective and efficient care. In addition, the advances in V-Care technology have allowed patients to connect with their healthcare providers more easily, providing a platform to facilitate communication and collaboration. Although usability testing is necessary to evaluate the efficacy and user experience of the app, it can be a significant investment of time and resources. Conclusion: The V-Care platform can be used to investigate the reported symptoms experienced by cancer patients receiving Immune checkpoint inhibitors (ICIs) and to compare them with the results from clinical trials. Furthermore, the project will utilize ePRO tools to collect symptoms from patients and provide insight into whether the reported symptoms are linked to the treatment. Clinical Relevance: V-Care provides a secure, easy-to-use interface for patient-clinician communication and data exchange. Its clinical system stores and manages patient data in a secure environment, while its clinical decision support system helps clinicians make decisions that are more informed, efficient, and cost-effective. This system has the potential to improve patient safety and quality of care, while also helping to reduce healthcare costs.

Adverse Childhood Experiences and Higher Levels of Stress Are Associated With the Co-occurrence of Cancer-Related Cognitive Impairment and Anxiety.

OBJECTIVES: We sought to identify subgroups of patients with distinct joint cancer-related cognitive impairment (CRCI) AND anxiety profiles and evaluate for differences in demographic and clinical characteristics, as well as levels of global stress, cancer-specific stress, cumulative life stress, and resilience. DATA SOURCES: Patients (n = 1332) completed the Attentional Function Index and the Spielberger State Anxiety Inventory six times over two cycles of chemotherapy. Global, cancer-specific, and cumulative life stress and resilience were evaluated using Perceived Stress Scale, Impact of Event Scale-Revised, Life Stressor Checklist-Revised, and Connor-Davidson Resilience Scale, respectively. Latent profile analysis was used to identify subgroups of patients with distinct joint CRCI AND anxiety profiles. Differences were evaluated using parametric and nonparametric tests. RESULTS: Three classes were identified (ie, No CRCI and Low Anxiety [57.3%], Moderate CRCI and Moderate Anxiety [34.5%], and High CRCI and High Anxiety [8.2%]). All of the stress measures showed a dose-response effect (ie, as the CRCI AND anxiety profile worsened, scores for all three types of stress increased). The two highest symptom classes reported higher occurrence rates for six specific stressors (eg, emotional abuse, physical abuse, sexual harassment). CONCLUSIONS: Findings suggest that higher levels of co-occurring CRCI AND anxiety are associated with some common risk factors, as well as higher levels of stress and lower levels of resilience. Increased knowledge of modifiable risk factors and sources of stress associated with the co-occurrence of these two symptoms will assist clinicians to identify high-risk patients and implement individualized interventions.

A Web-Based Cancer Self-Management Program (I-Can Manage) Targeting Treatment Toxicities and Health Behaviors: Human-Centered Co-design Approach and Cognitive Think-Aloud Usability Testing.

BACKGROUND: Patients with cancer require adequate preparation in self-management of treatment toxicities to reduce morbidity that can be achieved through well-designed digital technologies that are developed in co-design with patients and end users. OBJECTIVE: We undertook a user-centered co-design process in partnership with patients and other knowledge end users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management program (I-Can Manage). The specific study aims addressed in 2 phases were to (1) identify from the perspective of patients with cancer and clinicians the desired content, features, and functionalities for an online self-management education and support (SMES) program to enable patient self-management of treatment toxicities (phase 1); (2) develop the SMES prototype based on human-centered, health literate design principles and co-design processes; and (3) evaluate usability of the I-Can Manage prototype through user-centered testing (phase 2). METHODS: We developed the I-Can Manage program using multiperspective data sources and based on humanistic and co-design principles with end users engaged through 5 phases of development. We recruited adult patients with lung, colorectal, and lymphoma cancer receiving systemic treatments from ambulatory clinics in 2 regional cancer programs for the qualitative inquiry phase. The design of the program was informed by data from qualitative interviews and focus groups, persona and journey mapping, theoretical underpinnings of social cognitive learning theory, and formalized usability testing using a cognitive think-aloud process and user satisfaction survey. A co-design team comprising key stakeholders (human design experts, patients/caregiver, clinicians, knowledge end users, and e-learning and digital design experts) was involved in the developmental process. We used a cognitive think-aloud process to test usability and participants completed the Post-Study System Usability Questionnaire (PSSUQ). RESULTS: In the initial qualitative inquiry phase, 16 patients participated in interviews and 19 clinicians participated in interviews or focus groups and 12 key stakeholders participated in a persona journey mapping workshop to inform development of the program prototype. The I-Can Manage program integrates evidence-based information and strategies for the self-management of treatment toxicities and health-promoting behaviors in 6 e-learning modules (lay termed "chapters"), starting with an orientation to self-management. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of goals and action plans were integrated across chapters. Patient participants (n=5) with different cancers, gender, and age worked through the program in the human factors laboratory using a cognitive think-aloud process and all key stakeholders reviewed each chapter of the program and approved revisions. Results of the PSSUQ (mean total score: 3.75) completed following the cognitive think-aloud process (n=5) suggest patient satisfaction with the usability of I-Can Manage. CONCLUSIONS: The I-Can Manage program has the potential for activating patients in self-management of cancer and treatment toxicities but requires testing in a larger randomized controlled trial.