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.

Cardio-oncology and Cancer Rehabilitation: Is an Integrated Approach Possible?

With significant improvements in the understanding of cancer biology, improved detection, and the use of novel adjuvant therapies, each year more Canadians are surviving a cancer diagnosis. Despite their effectiveness these therapies often result in short- and long-term deleterious effects to major organ systems, particularly cardiovascular. Cardio-oncology is an emerging field of study with the aim to improve cardiovascular health across the oncology disease spectrum. International guidelines distinguish "cardio-oncology" rehabilitation from "cancer" rehabilitation, but how this is navigated is currently unknown. How such care should be assessed and integrated acutely or in the longer term remains unknown. Accordingly, the aim of this article is to consider the cancer patient's needs beyond the scope of cardio-oncology rehabilitation to holistically integrate cancer rehabilitation across the disease trajectory.

ACE-Neuro: A tailored exercise oncology program for neuro-oncology patients - Study protocol.

Background: Patients with primary brain tumours (i.e., neuro-oncology patients) lack access to exercise oncology and wellness resources. The purpose of the Alberta Cancer Exercise - Neuro-Oncology (ACE-Neuro) study is to assess the feasibility of a tailored neuro-oncology exercise program for patients across Alberta, Canada. The primary outcome is to assess the feasibility of ACE-Neuro. The secondary outcome is to examine preliminary effectiveness of ACE-Neuro on patient-reported outcomes and functional fitness. Methods: Neuro-oncology patients with a malignant or benign primary brain tumour that are pre, on, or completed treatment, are >18 years, and able to consent in English are eligible to participate in the study. Following referral from the clinical team to cancer rehabilitation and the study team, participants are triaged to determine their appropriateness for ACE-Neuro and other cancer rehabilitation services (including physiatry, physiotherapy, occupational therapy, and exercise physiology). In ACE-Neuro, participants complete a tailored 12-week exercise program with pre-post assessments of patient-reported outcomes and functional fitness, and objective physical activity tracked across the 12-week program. ACE-Neuro includes individual and group-based exercise sessions, as well as health coaching. Conclusion: We are supporting ACE-Neuro implementation into clinical cancer care, with assessment of needs enabling a tailored exercise prescription.

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.

The Oncology and Sexuality, Intimacy, and Survivorship Program Model: An Integrated, Multi-disciplinary Model of Sexual Health Care within Oncology.

Cancer-related sexual dysfunction is documented as one of the most distressing and long-lasting survivorship concerns of cancer patients. Canadian cancer patients routinely report sexuality concerns and difficulty getting help. In response to this gap in care, clinical practice guidelines were recently published in the Journal of Clinical Oncology. A sweeping trend is the creation of specialized clinics for patients' sexual health concerns. However, this much-needed attempt to address this service gap can be difficult to sustain without addressing the cancer care system from a broader perspective. Herein, we describe the implementation of a tiered systemic model of cancer-related sexual health programming in a tertiary cancer center. This program follows the Permission, Limited Information, Specific Suggestions, Intensive Therapy (PLISSIT) model, used previously for guiding individual practitioners. Visually, the model resembles a pyramid. The top 2 levels, corresponding to Intensive Therapy and Specific Suggestions, are comprised of group-based interventions for common cancer-related sexual concerns and a multi-disciplinary clinic for patients with complex concerns. The bottom 2 levels, corresponding to Permission and Limited Information, consist of patient education and provider education and consultation services. We describe lessons learned during the development and implementation of this program, including the necessity for group-based services to prevent inundation of referrals to the specialized clinic, and the observation that creating specialized resources also increased the likelihood that providers would inquire about patients' sexual concerns. Such lessons suggest that successful sexual health programming requires services from a systemic approach to increase sustainability.

Feasibility of performance-based functional assessment in brain tumour survivors.

INTRODUCTION: Rehabilitation and exercise interventions are beneficial for the physical and psychological health of cancer survivors. Current clinic-based performance status measures do not accurately capture the survivor's functioning, or rehabilitation and exercise needs. Our primary objective was to explore the feasibility of performing a performance-based functional assessment with brain tumour survivors as a means to inform needs for rehabilitation and exercise. METHODS: A feasibility study was conducted with survivors of brain and other neurological cancers attending new patient or follow-up clinics. Survivors were assessed using the Short Physical Performance Battery (SPPB), grip strength and Rosow-Breslau Physical Activity Self-Assessment (RSB). RESULTS: We approached 40 survivors with brain tumours, and 30 agreed to participate in the study. The SPPB was inversely correlated with Eastern Cooperative Oncology Group (ECOG) scores (r = -.73; p < .01), but scores on the SPPB for individuals classified as ECOG 1 ranged from 5 to 12 out of 12, indicating a large variability in functional scores within this ECOG grade. CONCLUSION: Implementation of objective functional testing is feasible in the neuro-oncology outpatient clinic. The SPPB appears to best inform the functional status of survivors with brain tumours, facilitating more individualised exercise and rehabilitation referrals.

Quality improvement in sexual health care for oncology patients: a Canadian multidisciplinary clinic experience.

PURPOSE: With the goal of improving the quality of sexual health care provision at our tertiary cancer centre, we developed, implemented, and assessed a multidisciplinary sexuality in an oncology program, to identify patient needs and apply interventions that could be effective in a broader oncology care context. METHODS: The establishment of our institution's first oncology-focused sexual health program is described within a quality improvement framework. A complementary retrospective chart review was performed to evaluate clinicodemographic data, including responses to validated sexual health questionnaires, from a 2-year clinical pilot. RESULTS: A sexual health program was introduced for cancer patients identified by health care providers or self-referred, receiving 130 referrals and conducting 64 consultation and 75 follow-up visits within a 2-year pilot period. Patients attending the program were 75% female, of mean age 52 years, and had most often breast (33%) or hematologic (30%) malignancies. Most (84%) had completed curative-intent treatment, with no evidence of disease, with 34% on ongoing endocrine therapy. The most frequent reasons for referral were sexual pain (38%), decreased libido (35%), and vaginal dryness (35% of females). All female patients demonstrated sexual dysfunction on the Female Sexual Function Index, and 80% of male patients demonstrated moderate to severe erectile dysfunction on the Sexual Health Inventory for Men. Patients waited a median of 63 days (SD 107, range 3-516) from referral to consultation, suggesting that demand for multidisciplinary sexual health care overwhelmed existing resources. CONCLUSIONS: We have demonstrated unmet sexual health needs across a diverse oncology patient population and have presented a framework for addressing these issues, highlighting the challenges encountered and proposing improvements. Insights emerging from a quality improvement perspective included the role of group-based sexual health support to improve accessibility and the need for staff education to encourage proactive intervention before referral for specialized care is needed.

Supporting Patients With Incurable Cancer: Backup Behavior in Multidisciplinary Cross-Functional Teams.

Caring for patients with incurable cancer presents unique challenges. Managing symptoms that evolve with changing clinical status and, at the same time, ensuring alignment with patient goals demands specific attention from clinicians. With care needs that often transcend traditional service provision boundaries, patients who seek palliation commonly interface with a team of providers that represents multiple disciplines across multiple settings. In this case study, we explore some of the dynamics of a cross-disciplinary approach to symptom management in an integrated outpatient radiotherapy service model. Providers who care for patients with incurable cancer must rely on one another to secure delivery of the right services at the right time by the right person. In a model of shared responsibilities, flexibility in who does what and when can enhance overall team performance. Adapting requires within-team and between-team monitoring of task and function execution for any given patient. This can be facilitated by a common understanding of the purpose of the clinical team and an awareness of the particular circumstances surrounding care provision. Backup behavior, in which one team member steps in to help another meet an expectation that would otherwise not be fulfilled, is a supportive team practice that may follow naturally in high-functioning teams. Such team processes as these have a place in the care of patients with incurable cancer and help to ensure that individual provider efforts more effectively translate into improved palliation for patients with unmet needs.

Multidisciplinary team contributions within a dedicated outpatient palliative radiotherapy clinic: a prospective descriptive study.

PURPOSE: Patients with bone metastases may experience pain, fatigue, and decreased mobility. Multiple medications for analgesia are often required, each with attendant side effects. Although palliative-intent radiotherapy (RT) is effective in decreasing pain, additional supportive care interventions may be overlooked. Our objective was to describe the feasibility of multidisciplinary assessment of patients with symptomatic bone metastases attending a dedicated outpatient palliative RT clinic. METHODS AND MATERIALS: Consecutive patients referred for RT for painful bone metastases were screened for symptoms and needs relevant to their medications, nutritional intake, activities of daily living, and psychosocial and spiritual concerns from January 1 to December 31, 2007. Consultations by appropriate team members and resulting recommendations were collected prospectively. Patients who received RT were contacted by telephone 4 weeks later to assess symptom outcomes. RESULTS: A total of 106 clinic visits by 82 individual patients occurred. As determined by screening form responses, the clinical Pharmacist, Occupational Therapist, Registered Dietician and Social Worker were consulted to provide assessments and recommendations within the time constraints presented by 1-day palliative RT delivery. In addition to pain relief, significant improvements in tiredness, depression, anxiety, drowsiness and overall well-being were reported at 4 weeks. CONCLUSIONS: Systematic screening of this population revealed previously unmet needs, addressed in the form of custom verbal and written recommendations. Multidisciplinary assessment is associated with a high number of recommendations and decreased symptom distress. Our findings lend strong support to the routine assessment by multiple supportive care professionals for patients with advanced cancer being considered for palliative RT.