Tailored Self-Management App to Support Older Adults With Cancer and Multimorbidity: Development and Usability Testing.

BACKGROUND: Globally, cancer predominates in adults aged older than 60 years, and 70% of older adults have ≥1 chronic condition. Cancer self-management interventions can improve symptom management and confidence, but few interventions target the complex needs of older adults with cancer and multimorbidity. Despite growing evidence of digital health tools in cancer care, there is a paucity of theoretically grounded digital self-management supports for older adults. Many apps for older adults have not been co-designed with older adults to ensure that they are tailored to their specific needs, which would increase usability and uptake. OBJECTIVE: We aim to report on the user evaluations of a self- and symptom-management app to support older adults living with cancer and multimorbidity. METHODS: This study used Grey's self-management framework, a design thinking approach, and involved older adults with lived experiences of cancer to design a medium-fidelity app prototype. Older adults with cancer or caregivers were recruited through community organizations or support groups to participate in co-designing or evaluations of the app. Data from interviews were iteratively integrated into the design process and analyzed using descriptive statistics and thematic analyses. RESULTS: In total, 15 older adults and 3 caregivers (n=18) participated in this study: 10 participated (8 older adults and 2 caregivers) in the design of the low-fidelity prototype, and 10 evaluated (9 older adults and 1 caregiver) the medium-fidelity prototype (2 older adults participated in both phases). Participants emphasized the importance of tracking functions to make sense of information across physical symptoms and psychosocial aspects; a clear display; and the organization of notes and reminders to communicate with care providers. Participants also emphasized the importance of medication initiation or cessation reminders to mitigate concerns related to polypharmacy. CONCLUSIONS: This app has the potential to support the complex health care needs of older adults with cancer, creating a "home base" for symptom management and support. The findings from this study will position the researchers to conduct feasibility testing and real-world implementation.

Caring for older adults with cancer in Canada: Views from healthcare providers and cancer care allies in the community.

BACKGROUND: Cancer is common and disproportionately impacts older adults. Moreover, cancer care of older adults is complex, and the current Canadian cancer care system struggles to address all of the dimensions. In this project, our goal was to understand the barriers and facilitators to caring for older adults with cancer from perspectives of healthcare professionals and cancer care allies, which included community groups, seniors' centers, and other community-based supports. METHODS: In collaboration with a patient advisory board, we conducted focus groups and interviews with multiple local healthcare professionals and cancer care allies in British Columbia, Canada. We used a descriptive qualitative approach and conducted a thematic analysis using NVivo software. RESULTS: A total of 71 participants of various disciplines and cancer care allies participated. They identified both individual and system-level barriers. Priority system-level barriers for older adults included space and staffing constraints and disconnections within healthcare systems, and between healthcare practitioners and cancer care allies. Individual-level barriers relate to the complex health states of older adults, caregiver/support person needs, and the needs of an increasingly diverse population where English may not be a first or preferable language. CONCLUSIONS: This study identified key barriers and facilitators that demonstrate aligned priorities among a diverse group of healthcare practitioners and cancer care allies. In conjunction with perspectives from patients and caregivers, these findings will inform future improvements in cancer care. Namely, we emphasize the importance of connections among health systems and community networks, given the outpatient nature of cancer care and the needs of older adults.

Occupational and Financial Setbacks in Caregivers of People with Colorectal Cancer: Considerations for Caregiver-Reported Outcomes.

Family caregivers of patients with cancer provide substantial physical, emotional, and functional care throughout the cancer trajectory. While caregiving can create employment and financial challenges, there is insufficient evidence to inform the development of caregiver-reported outcomes (CROs) that assess these experiences. The study purpose was to describe the occupational and financial consequences that were important to family caregivers of a patient with colorectal cancer (CRC) in the context of public health care, which represent potential considerations for CROs. In this qualitative Interpretive Description study, we analyzed interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers). Our findings point to temporary and long-term occupational and financial setbacks in the context of CRC. Caregiving for a person with CRC involved managing occupational implications, including (1) revamping employment arrangements, and (2) juggling work, family, and household demands. Caregiver financial struggles included (1) responding to financial demands at various stages of life, and (2) facing the spectre of lifelong expenses. Study findings offer novel insight into the cancer-related occupational and financial challenges facing caregivers, despite government-funded universal health care. Further research is warranted to develop CRO measures that assess the multifaceted nature of these challenges.

To share or not to share: communication of caregiver-reported outcomes when a patient has colorectal cancer.

BACKGROUND: The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. RESULTS: From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. CONCLUSIONS: The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden.

At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer.

Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers' assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient's life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.