Determining the destination: a co-designed chronic advanced cancer rehabilitation conceptual framework for engagement of individuals with lived experience in rehabilitation research.

BACKGROUND: Individuals living with chronic advanced cancer (CAC) often face distinct physical, functional, and cognitive issues. Their rehabilitation needs are not yet routinely met, warranting further CAC-specific rehabilitation-based research. Given the complexity of functional and symptom presentations, engagement of individuals living with CAC as partners in the research process is encouraged to better understand the lived perspective. Formal engagement requires both structured approaches and iterative processes. The aim was to co-design a conceptual framework to develop and integrate engagement strategies into rehabilitation research focused on CAC populations. METHODS: A multidisciplinary team of authors, including two individuals with lived experience, conducted an implementation-focused descriptive study to inform future research design, including: interviews and follow-up, review of current models and approaches, and development of a co-designed conceptual framework for engaging individuals with lived experience into CAC-specific rehabilitation research. RESULTS: Emergent themes include shared understanding, transparent appreciation, iterative processes and unique partnership needs. A definition, guiding principles and tools for engagement were identified. In consultation with individuals with lived experience, and application of the emergent themes in context, a conceptual framework to guide the engagement process was developed. CONCLUSION: A novel conceptual framework for engaging individuals with lived experience with CAC as partners in rehabilitation research is proposed to facilitate implementation-focused team-based approaches for this population.

Living with chronic advanced cancer (CAC) affects all parts of a person's life. Rehabilitation, such as physiotherapy, can be necessary. Healthcare data shows that rehabilitation needs of people with CAC are not yet being regularly met and that more research in this area is needed. Because CAC is complex and impacts each person differently, having people with CAC included as partners on the research team will likely help researchers better understand and explain rehabilitation needs of people with CAC.Our group of authors include different healthcare professionals, researchers, and two individuals with lived experience. Together, we carried out an implementation study and designed a framework to guide other researchers in including individuals living with CAC on research teams.We found that important themes for individuals with lived experience were: shared understanding, transparent appreciation, iterative processes (such as back and forth communication) and unique partnership needs.We titled the conceptual framework a "Co-designed Chronic ADVanced CANCer Rehabilitation" or "Co-ADVANCE" for short.

Mind-body internet and mobile-based interventions for depression and anxiety in adults with chronic physical conditions: A systematic review of RCTs.

This review summarizes the effectiveness of scalable mind-body internet and mobile-based interventions (IMIs) on depression and anxiety symptoms in adults living with chronic physical conditions. Six databases (MEDLINE, PsycINFO, SCOPUS, EMBASE, CINAHL, and CENTRAL) were searched for randomized controlled trials published from database inception to March 2023. Mind-body IMIs included cognitive behavioral therapy, breathwork, meditation, mindfulness, yoga or Tai-chi. To focus on interventions with a greater potential for scale, the intervention delivery needed to be online with no or limited facilitation by study personnel. The primary outcome was mean change scores for anxiety and depression (Hedges' g). In subgroup analyses, random-effects models were used to calculate pooled effect size estimates based on personnel support level, intervention techniques, chronic physical condition, and survey type. Meta-regression was conducted on age and intervention length. Fifty-six studies met inclusion criteria (sample size 7691, mean age of participants 43 years, 58% female): 30% (n = 17) neurological conditions, 12% (n = 7) cardiovascular conditions, 11% cancer (n = 6), 43% other chronic physical conditions (n = 24), and 4% (n = 2) multiple chronic conditions. Mind-body IMIs demonstrated statistically significant pooled reductions in depression (SMD = -0.33 [-0.40, -0.26], p<0.001) and anxiety (SMD = -0.26 [-0.36, -0.17], p<0.001). Heterogeneity was moderate. Scalable mind-body IMIs hold promise as interventions for managing anxiety and depression symptoms in adults with chronic physical conditions without differences seen with age or intervention length. While modest, the effect sizes are comparable to those seen with pharmacological therapy. The field would benefit from detailed reporting of participant demographics including those related to technological proficiency, as well as further evaluation of non-CBT interventions. Registration: The study is registered with PROSPERO ID #CRD42022375606.

Examining Patient Engagement in Chatbot Development Approaches for Healthy Lifestyle and Mental Wellness Interventions: Scoping Review.

BACKGROUND: Chatbots are growing in popularity as they offer a range of potential benefits to end users and service providers. OBJECTIVE: Our scoping review aimed to explore studies that used 2-way chatbots to support healthy eating, physical activity, and mental wellness interventions. Our objectives were to report the nontechnical (eg, unrelated to software development) approaches for chatbot development and to examine the level of patient engagement in these reported approaches. METHODS: Our team conducted a scoping review following the framework proposed by Arksey and O'Malley. Nine electronic databases were searched in July 2022. Studies were selected based on our inclusion and exclusion criteria. Data were then extracted and patient involvement was assessed. RESULTS: 16 studies were included in this review. We report several approaches to chatbot development, assess patient involvement where possible, and reveal the limited detail available on reporting of patient involvement in the chatbot implementation process. The reported approaches for development included: collaboration with knowledge experts, co-design workshops, patient interviews, prototype testing, the Wizard of Oz (WoZ) procedure, and literature review. Reporting of patient involvement in development was limited; only 3 of the 16 included studies contained sufficient information to evaluate patient engagement using the Guidance for Reporting Involvement of Patients and Public (GRIPP2). CONCLUSIONS: The approaches reported in this review and the identified limitations can guide the inclusion of patient engagement and the improved documentation of engagement in the chatbot development process for future health care research. Given the importance of end user involvement in chatbot development, we hope that future research will more systematically report on chatbot development and more consistently and actively engage patients in the codevelopment process.

The Appraisal of Clinical Practice Guidelines for Breast Cancer-Related Lymphedema.

Background: Approaches to screening, assessment, and treatment of breast cancer-related lymphedema (BCRL) vary widely. We evaluated overall quality of clinical practice guidelines (CPGs) for managing BCRL using the Appraisal of Guidelines for REsearch and Evaluation II (AGREE II) tool, and relevance of consensus recommendations for the Canadian health context. Methods and Results: We searched electronic databases, gray literature, national lymphedema frameworks, and expert opinions, to identify lymphedema CPGs, printed/published from January 2013 to October 2021. Using AGREE II, six health care professionals reviewed CPGs for consensus. Domain-specific AGREE II quality consensus scores were required (≥70% for Rigor of Development; ≥ 60% for Stakeholder Involvement and Editorial Independence; and ≥50% for Clarity of Presentation, Applicability, Scope, and Purpose). Results and overall recommendations from the CPGs were summarized and synthesized. Nine CPGs met inclusion criteria for review. Wide variability of evidence-based recommendations, and limited clinical considerations were found. Scope and Purpose, and Clarity of Presentation were adequate in six of nine CPGs; Stakeholder Involvement in seven of nine CPGs; and Editorial Independence in three of nine CPGs. Across all CPGs, Applicability was minimally reported. Only the Queensland Health CPG met quality consensus scores for Rigor and Development; however, the focus was limited to compression therapy. Conclusions: No CPG reviewed could be adopted for the Canadian health context. The proposed Canadian BCRL CPG will focus on stakeholder engagement, methodology, and implementation/evaluation. Using AGREE II allowed for assessment of quality of methods used to develop identified CPGs from other countries before consideration of adoption in a Canadian Context.

Exercise Preferences, Barriers, and Facilitators of Individuals With Cancer Undergoing Chemotherapy Before Stem Cell Transplantation: A Mixed-Methods Study.

BACKGROUND: Exercise can help mitigate side effects of hematopoietic stem cell transplantation (HSCT), particularly when initiated before HSCT. However, the exercise-related barriers, facilitators, and preferences of this population remain unclear. OBJECTIVE: This study aimed to explore the patient experience to inform future implementation of a prehabilitation intervention. INTERVENTIONS/METHODS: A 2-phase sequential explanatory mixed-methods study was conducted using (1) cross-sectional survey and (2) focus groups. Survey questions aligned with the Theoretical Domains Framework. Focus group data were analyzed using a directed content analysis approach, followed by inductive thematic analysis to generate themes that represented the exercise-related barriers, facilitators, and preferences of participants. RESULTS: Twenty-six participants completed phase 1 (n = 22 with multiple myeloma). Fifty percent of participants (n = 13) were fairly/very confident in their ability to exercise pre-HSCT. Eleven participants completed phase 2. Exercise barriers included knowledge/skill limitations, inadequate healthcare provider support, and the emotional toll of treatment. Facilitators included social support and goals. Exercise preferences were related to 2 themes: (1) program structure (subthemes: prescription and scheduling, mode of delivery) and (2) support (subthemes: support from personnel, tailoring, and education). CONCLUSION: Key exercise-related barriers included knowledge limitations, disease/treatment effects, and inadequate support. Prehabilitation should be tailored, flexible, and include education and a virtual or hybrid delivery model in this population. IMPLICATIONS FOR PRACTICE: Nurses are well positioned to identify functional limitations and counsel and refer patients to exercise programming and/or physiotherapy services. Including an exercise professional in the pretransplant care team would provide key supportive care assistance for the nursing team.

Virtual or In-Person: A Mixed Methods Survey to Determine Exercise Programming Preferences during COVID-19.

A survey was conducted to identify barriers and facilitators to engaging in virtual and in-person cancer-specific exercise during COVID-19. A theory-informed, multi-method, cross-sectional survey was electronically distributed to 192 individuals with cancer investigating preferences towards exercise programming during COVID-19. Respondents had previously participated in an exercise program and comprised two groups: those who had experience with virtual exercise programming ('Virtual') and those who had only taken part in in-person exercise ('In-Person'). Quantitative data were summarized descriptively. Qualitative data were thematically categorized using framework analysis and findings were mapped to an implementation model. The survey completion response rate was 66% (N = 127). All respondents identified barriers to attending in-person exercise programming during COVID-19 with concerns over the increased risk of viral exposure. Virtual respondents (n = 39) reported: (1) feeling confident in engaging in virtual exercise; and (2) enhanced motivation, accessibility and effectiveness as facilitators to virtual exercise. In-Person respondents (n = 88) identified: (1) technology as a barrier to virtual exercise; and (2) low motivation, accessibility and exercise effectiveness as barriers towards virtual exercise. Sixty-six percent (n = 58) of In-Person respondents reported that technology support would increase their willingness to exercise virtually. With appropriately targeted support, perceived barriers to accessing virtual exercise-including motivation, accessibility and effectiveness-may become facilitators. The availability of technology support may increase the engagement of individuals with cancer towards virtual exercise programming.

Update to the Canadian clinical practice guideline for best-practice management of breast cancer-related lymphedema: study protocol.

BACKGROUND: One of the more frequent complications following treatment for breast cancer, lymphedema is a substantial swelling of the arm, breast and chest wall that occurs on the side where lymph nodes were removed. The aim of this work is to update recommendations on the prevention, diagnosis and management of lymphedema related to breast cancer. METHODS: We present the protocol for an update of the 2001 clinical practice guideline on lymphedema from the Steering Committee for Clinical Practice Guidelines for the Care and Treatment of Breast Cancer. We will use a patient-oriented research approach with a focus on self-management and the positive health model to inform the updated guideline development. The methods proposed will be undertaken with consideration of the standards outlined in the Appraisal of Guidelines for Research and Evaluation II (AGREE II) instrument. The literature will be appraised by evaluating existing guidelines from other countries, the evidence from systematic reviews and meta-analyses and direct evidence from clinical studies. We will manage competing interests according to Guidelines International Network principles. Recommendations will be presented using an actionable statement format and will be linked to the level of evidence along with any relevant considerations used in formulation. A draft of the guideline will be produced by the steering committee then sent out to international experts and stakeholder groups for feedback. INTERPRETATION: The primary benefit of this clinical guideline will be to improve the quality of care of women with breast cancer-related lymphedema. Findings will be disseminated at national and international conferences and through webinars and educational videos hosted on the websites of the supporting organizations.

Evaluating implementation and pragmatism of cancer-specific exercise programs: a scoping review.

PURPOSE: Studies in exercise oncology are increasingly evaluating the implementation of cancer-specific exercise programming in real-world settings. Evaluating current implementation efforts and identifying current research gaps may inform future implementation. This scoping review explores studies implementing cancer-specific exercise programs to determine their pragmatic characteristics and evaluate potential for translation into practice. METHODS: A systematic literature search was conducted using five databases (up to July 2020) to identify implementation studies that used qualitative or quantitative methods. Program pragmatism was evaluated using the PRECIS/RE-AIM tool. RESULTS: Fourteen articles were included for review. While programs were moderately pragmatic (average: 3.4; range: 2.8-4.2), variability was observed between scoring domains. Programs scored higher (more pragmatic) in domains typical for effectiveness studies, including participant eligibility, follow-up intensity, primary trial outcome, and analysis of primary outcome. In contrast, programs scored lower (less pragmatic) in domains aligned with implementation science, including intervention flexibility, adoption, implementation, and maintenance. Limited information was reported regarding program fidelity, adaptations, and maintenance/sustainability. CONCLUSION: Researchers should consider the pragmatism of interventions, the nuances of program adoption and implementation at the setting level, and the transition and integration of programming into the healthcare system. Future studies may benefit from the inclusion of decision-makers and implementation experts and shifting focus towards flexible programming. PRECIS/RE-AIM may facilitate the evaluation of programs throughout the study design and implementation process. IMPLICATIONS FOR CANCER SURVIVORS: The implementation of pragmatic exercise programs that are both scalable and sustainable is needed so that cancer survivors can experience exercise-related benefits beyond research settings.

Nighttime compression supports improved self-management of breast cancer-related lymphedema: A multicenter randomized controlled trial.

BACKGROUND: Lymphedema is a prevalent long-term effect of breast cancer treatment associated with reduced quality of life. This study examined the efficacy of nighttime compression as a self-management strategy for women with chronic breast cancer-related lymphedema. METHODS: Th authors conducted a parallel 3-arm, multicenter, randomized trial. Women were recruited from 3 centers in Canada and randomized to group 1 (daytime compression garment alone [standard care]), group 2 (daytime compression garment plus nighttime compression bandaging), or group 3 (daytime compression garment plus the use of a nighttime compression system garment). The primary outcome was the change in excess arm volume from the baseline to 12 weeks. Participants from all groups used a nighttime compression system garment from weeks 13 to 24. RESULTS: One hundred twenty women were enrolled, 118 completed the randomized trial, and 114 completed the 24-week follow-up. The rates of adherence to nighttime compression were 95% ± 15% and 96% ± 11% in the compression bandaging and nighttime compression system groups, respectively. After the intervention, the addition of nighttime compression was found to be superior to standard care for both absolute milliliter reductions (P = .006) and percentage reductions (P = .002) in excess arm lymphedema volume. Significant within-group changes were seen for quality of life across all groups; however, no between-group differences were found (P > .05). CONCLUSIONS: The trial demonstrated a significant improvement in arm lymphedema volume from the addition of nighttime compression whether through the application of compression bandaging or through the use of a nighttime compression system garment. LAY SUMMARY: Lymphedema is swelling that occurs in the arm on the side of the surgery for breast cancer. Lymphedema occurs in approximately 21% of women. Lymphedema tends to worsen over time and can result in recurrent infections in the arm, functional impairment, and pain. Currently, treatment consists of intensive treatments to reduce the swelling followed by regular use of a compression sleeve during the day. This study examined and found a benefit from the addition of nighttime compression (whether through self-applied compression bandaging or through the use of a nighttime compression system garment) to the use of a daytime compression sleeve.

The Essential Role of Occupational Therapy to Address Functional Needs of Individuals Living with Advanced Chronic Cancers.

OBJECTIVE: Medical progress in cancer care has led to increased life expectancy outcomes across all stages of cancer, including in advanced cancers. People now living with advanced chronic cancers have unique, ongoing functional and quality-of-life needs. This article explores the functional considerations of individuals living with advanced chronic cancers in terms of managing chronic palliative care needs, assessing and intervening for functional issues, and consistently using occupational therapy in shared service provision together with medical and nursing teams. The unique and changing functional needs of these individuals may be effectively addressed through consideration of chronic palliative approaches to care; earlier access to occupational therapy services to facilitate continued engagement in everyday activities; and shared service provision with nursing to address both medical wellness and functional status. DATA SOURCES: These include key databases (Pubmed, CINAHL), international guidelines, and professional guidance documents. CONCLUSION: Individuals living with advanced chronic cancer have ongoing and fluctuating functional needs that should be addressed in palliative care service provision. The inclusion of occupational therapy as part of inter- and multidisciplinary teams can facilitate maximization of function for individuals living with advanced chronic cancer. IMPLICATIONS FOR NURSING PRACTICE: Timely early referrals to occupational therapy can address functional issues as they arise, and can prepare individuals for future functional considerations.

Cancer-related fatigue in head and neck cancer survivors: Energy and functional impacts.

BACKGROUND: Survivors with head and neck cancer (HNC) report cancer-related fatigue (CRF) as a devastating, prevalent health issue that limits activity engagement and adversely influences quality of life. OBJECTIVE: To explore HNC survivors' written responses and descriptors regarding CRF, and offer potential healthcare strategies based on findings. METHODOLOGY: In written format, similar to responses on intake forms in outpatient-clinics, 25 HNC survivors provided descriptions of their CRF experiences and their perspectives on its impact. An exploratory descriptive research design was utilized, drawing on social theory for content analysis and thematic development. RESULTS: Two main themes regarding CRF arose from the data: (1) CRF as a barrier to daily function; and (2) uncontrollable and unpredictable energy fluctuations. CONCLUSIONS: To enhance outcomes of CRF symptom management in HNC survivors, a healthcare approach that targets the functional implications of CRF, and utilizes energy cultivation strategies when communicating about the negative impacts of CRF (including limited function and fluctuating energy levels) may be beneficial for HNC survivors. Further research into the effects of CRF on function for HNC survivors is warranted.

A Practical Approach to Using Integrated Knowledge Translation to Inform a Community-Based Exercise Study.

BACKGROUND: Our aim was to understand cancer survivor needs prior to, and following the Alberta Cancer Exercise (ACE) pilot randomized trial as a means to inform implementation of a province-wide cancer-specific, community-based exercise program. METHODS: Questionnaires and semi-structured stakeholder engagement sessions were conducted with cancer survivors to explore preferences, barriers and facilitators/benefits at two timepoints: (1) pre-ACE: prior to initiation of the ACE pilot trial (n = 13 survivors and n = 5 caregivers); and (2) post-ACE: following participation in the ACE pilot trial (n = 20 survivors). Descriptive statistics were used to summarize quantitative data from questionnaires. Stakeholder engagement data were analyzed using a framework analysis approach. Emergent themes were then mapped to actionable outcomes. RESULTS: Pre-ACE, survivors indicated a preference for exercise programs that were (1) supervised by exercise specialists knowledgeable about cancer, (2) included support from other health care providers, (3) were held in community locations that were easily accessible. Post-ACE, participants identified (1) a lack of exercise counseling from health care providers, (2) the need for earlier introduction of exercise in the care pathway, and (3) supported referral to exercise programming. CONCLUSIONS: An integrated knowledge translation approach identified actionable outcomes to address survivor needs related to exercise in clinical cancer and community-based contexts.

Resistance Exercise and Art Therapy on Body Image in Breast Cancer: A Scoping Review.

Background: Treatments for breast cancer are invasive, causing visible changes such as loss of the breast, body weight change, and hair loss. These changes in conjunction with the pressure for women to conform to societal beauty standards may lead to body image disturbance in breast cancer survivors (BCS). The aims of this scoping review were to explore the nature, characteristics, and extent of the literature examining resistance exercise or art therapy on body image in BCS; and examine how body image is defined and measured across the studies. Methods: We searched the literature up to January 2020, which included conducting electronic searches of three major databases and checking references of screened articles. Results: Ninety-three articles were identified, 28 underwent full-text screening, with 8 studies eligible for inclusion in the review. Five randomized control trials, one hybrid effectiveness-implementation trial, and two single group studies were found. All studies showed significant within-group difference in body image scores, with two studies showing a between-group difference in favor of resistance exercise. No studies were found combining resistance exercise and art therapy. None of the studies defined the aspect of body image they wished to measure, and only one used theory to inform their research. Discussion: Preliminary evidence supports the benefit of resistance exercise and art therapy as single interventions to improve body image perception among BCS. Findings suggest the need for closer attention to the delivery format of interventions. Future research is needed that is theory-informed, with a clear definition of the aspect of body image of interest, and with body image as the primary outcome.

Uncertainty and sense-of-self as targets for intervention for cancer-related fatigue.

Cancer-related fatigue (CRF) can be a devastating consequence of cancer and cancer treatments, negatively impacting 50%-90% of cancer patients regardless of age, sex or diagnosis. Limited evidence and research exist to inform effective patient-centred interventions. To target symptom management, there must first be a broader understanding of the symptoms and the lived experience of the persons experiencing CRF and those caring for them, from a supportive as well as a healthcare perspective. This study set out to consider whether components of the language used or descriptors reported by patients, family members, and/or healthcare professionals may provide new insights for potential targets for intervention development. Descriptors from 84 responses (n = 84) from cancer survivors, family members and healthcare professionals were analysed for content. The descriptors reiterate the physical, emotional and functional consequences of CRF, but also reflect two new potential targets for intervention to mitigate the impacts of CRF: uncertainty and sense-of-self.

Physical Rehabilitation and Occupational Therapy.

Head and neck cancer and associated treatments can have debilitating effects on patient physical function and quality of life. The American Cancer Society's Head and Neck Cancer Survivorship Care Guidelines recommend that all patients receive an assessment after their treatment to address complications that may impact long-term recovery and function. Evidence supports the role of physical activity, exercise, physical therapy, and occupational therapy to decrease symptom burden after treatment and improve strength, endurance, and function. Physical therapy can play an important role in optimizing jaw, neck and shoulder function and occupational therapy can optimize return to work.

The Interdisciplinary Rehabilitation Care Team and the Role of Physical Therapy in Survivor Exercise.

BACKGROUND: Rehabilitation professionals offer expertise in functional assessment, treatment of impairments and functional limitations, and disability prevention. To optimize recovery, and often prior to participating in community-based exercise programming, survivors may need rehabilitation services from a range of healthcare professionals, including physiatrists, nurses, nutritionists, psychologists, and speech, occupational, and physical therapists. OBJECTIVES: Survivors with physical impairments and functional limitations may benefit from interdisciplinary rehabilitation and physical therapy, including tailored therapeutic exercise interventions. METHODS: A literature review was conducted using the key words cancer survivor, cancer rehabilitation, impairment, fatigue, lymphedema, chemotherapy-induced peripheral neuropathy, and exercise. MEDLINE®, EMBASE, Cochrane Database of Systematic Reviews, and CINAHL® databases were searched. FINDINGS: Nurses play a critical role in identifying survivors whose function or fitness is compromised to the point where participation in community-based exercise programming would be inappropriate or unsafe. The interdisciplinary rehabilitation care team can help facilitate the survivor's transition to community-based exercise programming.