To Reconstruct or Not to Reconstruct: Piloting a Vietnamese and Arabic Breast Reconstruction Decision Aid in Australia.

Currently, there are no resources to support culturally and linguistically diverse (CALD) women with breast cancer to make decisions about undergoing breast reconstruction (BR). This study evaluated the usability and acceptability of decision aids (DAs) for Vietnamese- and Arabic-speaking women. This two-phase qualitative recruited Vietnamese- (Phase 1) and Arabic-speaking (Phase 2) adult (age ≥ 18 years) women who were diagnosed with breast cancer and could read Vietnamese/Arabic. Women participated in either think-aloud telephone interviews (Phase 1) or semi-structured telephone interviews (Phase 2) and provided feedback on the DA. Interviews were audio-recorded, translated, and transcribed from Vietnamese/Arabic to English, and inductive thematic analysis was undertaken. Additionally, Arabic-speaking women completed the Preparation for Decision Making (PrepDM) scale in Round 2. Twenty-five women were recruited in two phases (Phase 1: Vietnamese-speaking women, n = 14; Phase 2: Arabic-speaking, n = 11). Three themes were developed in Phase 1: (1) DA content and reception; (2) linguistic attributes and cultural appropriateness; and (3) factors that improve the DAs' impact. Three themes were developed in Phase 2: (1) varying perceptions of DA content; (2) linguistic and cultural suitability of information; and (3) impact of DA on decision making. Women from both phases identified areas for improvement: minimising the use of medical terminology, considering the cultural taboos associated with the word 'breast', and addressing remaining information gaps. Both language DAs were generally perceived as acceptable and useful in providing information about BR options and prompting women's reflections about the suitability of BR as part of their treatment. The mean PrepDM score for Arabic-speaking women in Round 2 was 4.8/5 (SD = 0.3). Further work is needed to ensure that culturally adapted DAs take into account the myriad of information needs and health literacy levels. The key role of healthcare professionals in shared decision making among CALD populations should also be considered.

Guided versus non-guided digital psychological interventions for cancer patients: A systematic review and meta-analysis of engagement and efficacy.

OBJECTIVE: To evaluate engagement with and efficacy of guided versus non-guided digital interventions targeting psychological symptoms of cancer via a systematic review of current evidence. METHODS: PubMed, Scopus, PsychINFO, MEDLINE, and CINAHL databases were searched. Eligible publications were randomised controlled trials of guided or non-guided digital psychological interventions used in cancer settings reporting intervention efficacy and/or engagement. Study methodological quality was assessed using the Cochrane risk of bias (RoB) tool. Random effects meta-analyses were performed on outcomes with sufficient data, with sub-group analyses of intervention type and follow-up period. RESULTS: Forty-three studies were included. Studies varied by level of guidance, type of technology used, duration, and outcomes assessed. Most studies had a high overall RoB. Meta-analysis indicated that guided interventions significantly reduced distress, anxiety, and fatigue, while non-guided did not. For depression and quality of life, both guided and non-guided interventions produced significant improvements. Guided interventions reported higher levels of intervention engagement than non-guided. CONCLUSIONS: Guided digital psychological interventions were likely to be more effective than non-guided ones for cancer patients, particularly in reducing distress, anxiety, and fatigue. Whilst both types were found to improve depression and life quality, guided interventions were associated with higher patient engagement. These findings suggest digital interventions could supplement traditional cancer care, warranting further research concerning long-term effects and cost-efficiency.

Evaluation of the validity and screening performance of a revised single-item fear of cancer recurrence screening measure (FCR-1r).

OBJECTIVE: Fear of cancer recurrence (FCR) is highly prevalent among cancer survivors, but irregularly identified in practice. Single-item FCR measures suitable for integration into broader psychosocial screening are needed. This study evaluated the validity of a revised version of the original FCR-1 (FCR-1r) and screening performance alongside the Edmonton Symptom Assessment System - Revised (ESAS-r) anxiety item. METHODS: The FCR-1r was adapted from the FCR-1 and modelled on the ESAS-r. Associations between FCR-1r and FCR Inventory-Short Form (FCRI-SF) scores determined concurrent validity. Relationships of FCR-1r scores with variables related (e.g., anxiety, intrusive thoughts) and unrelated (e.g., employment/marital status) to FCR determined convergent and divergent validity respectively. A Receiver-Operating Characteristic analysis examined screening performance and cut-offs for the FCR-1r and ESAS-r anxiety item. RESULTS: 107 participants were recruited in two studies (Study 1, July-October 2021, n = 54; Study 2: November 2021-May 2022, n = 53). The FCR-1r demonstrated concurrent validity against the FCRI-SF (r = 0.83, p < 0.0001) and convergent validity versus the Generalised Anxiety Disorder-7 (r = 0.63, p < 0.0001) and Impact of Event Scale-Revised Intrusion subscale (r = 0.55, p < 0.0001). It did not correlate with unrelated variables (e.g., employment/marital status), indicating divergent validity. An FCR-1r cut-off ≥5/10 had 95% sensitivity and 77% specificity for detecting clinical FCR (area under the curve (AUC) = 0.91, 95% CI 0.85-0.97, p < 0.0001); ESAS-r anxiety cut-off ≥4 had 91% sensitivity and 82% specificity (AUC = 0.87, 95% CI 0.77-0.98, p < 0.0001). CONCLUSIONS: The FCR-1r is a valid and accurate tool for FCR screening. Further evaluation of the screening performance of the FCR-1r versus the ESAS-r anxiety item in routine care is needed.

Encouraging Patients to Ask Questions: Development and Pilot Testing of a Question Prompt List for Patients Undergoing a Biopsy for Suspected Prostate Cancer.

This study assessed the acceptability and feasibility of a question prompt list (QPL) to facilitate informed treatment decision-making in men with suspected localised prostate cancer, which involves values-based choices between options with similar efficacy but different side effects. The QPL was developed through iterative consultation with consumers, clinicians and researchers. Acceptability was assessed using study-specific questions regarding QPL satisfaction and usefulness and qualitative interviews. Feasibility was determined via the proportion of men given the QPL according to medical records and the completion of standardised measures of decisional outcomes. Quantitative data were analysed using descriptive and univariate statistics. Qualitative data were thematically analysed. Fifty-two men consented; 34 provided data for analysis. The QPL recipients reported moderate-high content satisfaction (70.6%) and perceived usefulness in guiding appointments when receiving biopsy results (64.7%). Two main qualitative themes also indicated the QPL acceptability: (1) the freedom to ask-acceptable timing, flexible usage and usefulness of the QPL, and (2) satisfaction with the QPL content. However, only 18.4% of eligible men received the QPL, indicating limited feasibility. The QPL is safe and acceptable, but further research is needed regarding how to facilitate the uptake of the question prompt list in clinical practice.

The Evaluation of the Suitability, Quality, and Readability of Publicly Available Online Resources for the Self-Management of Fear of Cancer Recurrence.

Cancer survivors often rely on the internet for health information, which has varying levels of readability, suitability, and quality. There is a need for high-quality online self-management resources for cancer survivors with fear of cancer recurrence (FCR). This study evaluated the readability, suitability, and quality of publicly available online FCR self-management resources. A Google search using FCR-related keywords identified freely available FCR self-management resources for cancer survivors in English. Resource readability (reading grade level), suitability, and quality were evaluated using relevant assessment tools. Descriptive statistics and cluster analysis identified resources with higher suitability and quality scores. Mean resource (n = 23) readability score was grade 11 (SD = 1.6, Range = 9-14). The mean suitability score was 56.0% (SD = 11.4%, Range = 31.0-76.3%), indicating average suitability and the mean quality score was 53% (SD = 11.7%, Range = 27-80%), indicating fair quality. A cluster of 15 (65%) resources with higher suitability and quality scores was identified. There were no significant associations between suitability or quality scores and the type of organisation that published the resources. Online FCR self-management resources varied in readability, suitability and quality. Resources with higher quality and suitability scores relative to other resources are identified for use by healthcare professionals and cancer survivors. Resources that are more culturally appropriate, with lower reading grade levels and detailed self-management strategies are needed.

Optimising implementation of telehealth in oncology: A systematic review examining barriers and enablers using the RE-AIM planning and evaluation framework.

Telehealth facilitates access to cancer care for patients unable to attend in-person consultations, as in COVID-19. This systematic review used the reach, effectiveness, adoption, implementation, and maintenance (RE-AIM) framework to evaluate telehealth implementation and examine enablers and barriers to optimal implementation in oncology. MEDLINE, PubMed, CINAHL, and the Cochrane Database of Systematic Reviews were searched between January 2011-June 2022. Eighty-two articles representing 73 studies were included. One study explicitly used the RE-AIM framework to guide study design, conduct, or reporting. Reach (44%) and implementation (38%) were most commonly reported, maintenance (5%) least commonly. Key telehealth implementation enablers included professional-led delivery, patient-centred approaches, and positive patient perceptions. Key barriers included patient discomfort with technology, limited supporting clinic infrastructure, and poor access to reliable internet connection and videoconferencing. While a patient-centred and professional-supported approach enables telehealth implementation, technology and infrastructure constraints need surmounting for sustained implementation beyond the COVID-19 pandemic.

Feasibility and preliminary efficacy of iConquerFear: a self-guided digital intervention for fear of cancer recurrence.

PURPOSE: Approximately 50% of cancer survivors experience moderate-severe fear of cancer recurrence (FCR). Self-guided digital interventions have potential to address the high level of FCR-related unmet needs at scale, but existing digital interventions have demonstrated variable engagement and efficacy. This study aimed to evaluate the feasibility and preliminary efficacy of iConquerFear, a five-module self-guided digital FCR intervention. METHODS: Eligible curatively treated breast cancer survivors were recruited. Participants reporting clinically significant FCR (≥ 13 on the Fear of Cancer Recurrence Inventory-Short Form; FCRI-SF) were given access to iConquerFear. Feasibility was indicated by > 50% of eligible participants enrolling in iConquerFear and recording moderate (≥ 120 min) or greater usage. Preliminary efficacy was evaluated via changes in self-reported FCR severity, anxiety, depression, intrusions and metacognitions from baseline to immediately and 3 months post-intervention. RESULTS: Fifty-four (83%) of 65 eligible participants enrolled in iConquerFear; six subsequently withdrew. Thirty-nine (83%) participants recorded moderate (n = 24; 120-599 min) or high (n = 15; ≥ 600 min) usage. Engagement levels increased with participant age (p = 0.043), but were lower in participants with higher baseline FCR (p = 0.028). Qualitative feedback indicated engagement was sometimes limited by difficulties with navigation and relating to featured survivors. Participants reported significantly improved FCR (mean reduction (95%CI): baseline to post-intervention - 3.44 (- 5.18, - 1.71), baseline to 3-month follow-up - 4.52 (- 6.25, - 2.78), p = < 0.001). CONCLUSION: iConquerFear is a feasible and potentially efficacious intervention for reducing FCR in breast cancer survivors. Easier navigation and more relatable examples may enhance engagement. IMPLICATIONS FOR CANCER SURVIVORS: iConquerFear may help address moderate but burdensome FCR levels in cancer survivors.

Supporting cancer patients to self-manage: Extent of use and perceptions of "trusted" online self-management resources.

OBJECTIVES: Online resources can support patient self-management practices, but are not systematically used in routine clinical practice. We evaluated cancer patients' satisfaction with, and use of, tailored online resources. METHODS: Patients completed monthly validated electronic patient reported outcome measures (ePROMs) of distress, unmet needs and symptoms. Patients with ePROM scores above pre-determined thresholds received an email directing them to relevant online self-management resources. Perceptions and experiences with these resources were evaluated via an online survey 3, 6 and 9 months after their initial monthly ePRO; and a subset of patients was also interviewed. Webpage use was monitored through Google Analytics and ClickMeter. RESULTS: Overall, 221 patients completed evaluation surveys and 31 completed interviews. Patients spent 0-10 min on average accessing resources, with 93% indicating they would reuse them. The most viewed page was physical wellbeing (n = 680); exercise and nutrition resources were most popular; and 69% of patients were satisfied with information content, reporting resources were easy to understand and navigate. CONCLUSIONS: Online resources are perceived as acceptable and useful. Design and delivery recommendations can improve their support of self-management. PRACTICE IMPLICATIONS: Incorporating automated online self-management resources into routine clinical workflows is a viable model to support routine follow up care.

Having breast reconstruction post-mastectomy: barriers and facilitators reported by Vietnamese- versus English-speaking women with breast cancer.

Objective: Little is known about the experience of women of culturally and linguistically diverse (CALD) backgrounds in relation to breast reconstruction following mastectomy as treatment for their breast cancer. The aim of this study was to explore the factors that influenced Vietnamese- and English-speaking women's decisions about breast reconstruction post-mastectomy for their breast cancer, in Australia.Design: The participants in this study comprised of Vietnamese-speaking women of Vietnamese heritage, and English-speaking women from mixed ethnicities (Vietnamese included). In this qualitative study, Vietnamese-speaking and English-speaking women who had breast cancer treated by mastectomy with or without breast reconstruction participated in in-depth interviews. Interviews were undertaken in the woman's chosen language (Vietnamese or English), audio-recorded, transcribed/translated and analysed using thematic analysis.Results: Fourteen Vietnamese-speaking and 13 English-speaking patients were recruited. Participants identified age, lack of information, concerns regarding surgical procedure, fears about complications and cancer recurrence as barriers to breast reconstruction. Many more Vietnamese-speaking participants identified lack of information about breast reconstruction as a barrier compared to English-speaking participants. Both groups described the ability to wear clothing of their choice, partner influence, and the need to feel 'normal' as facilitators to having breast reconstruction. Vietnamese-speaking participants in particular identified doctor recommendation of breast reconstruction as a major facilitator.Conclusion: Lack of information about reconstruction was a persistent theme, though it was identified by more Vietnamese women as a barrier to having breast reconstruction. The results reinforce the importance of doctors' recommendations in helping particularly the Vietnamese women make an informed decision about reconstruction following mastectomy as treatment for their breast cancer.

The unmet supportive care needs of Chinese patients and caregivers affected by cancer: A systematic review.

INTRODUCTION: Cancer patients and caregivers have myriad unmet needs which can have detrimental consequences on their psychosocial wellbeing. This systematic review aims to identify the unmet supportive care needs of immigrant and native Chinese cancer patients and caregivers. METHODS: We systematically searched various electronic databases (e.g. Scopus, CINAHL, PsycInfo, etc.) from the earliest date available until January 2018. Additional studies were identified through reference lists and citation tracking. Eligibility criteria included: (a) qualitative, quantitative and/or mixed methods studies published in English; (b) immigrant and native Chinese cancer patients and/or caregivers (age ≥18 years); (c) unmet needs and/or their correlates. Studies were assessed for their risk of bias, and a narrative synthesis of findings was performed. RESULTS: Forty-seven papers from 45 studies met eligibility criteria. The most prevalent area of unmet needs was health system and information. Patients most commonly desired one member of the hospital to talk to about all aspects of their care. Caregivers preferred information about the patient's prognosis and likely outcome. Anxiety was most commonly associated with higher levels of health system and information needs. CONCLUSION: Chinese patients and caregivers experience a range of unmet health system and information needs, which differ depending on their stage along the cancer trajectory.

Moving beyond translation: Development of WeCope, a self-management resource for Chinese-Australian immigrants affected by cancer.

OBJECTIVE: Currently, there are no self-management resources in Australia that support both Chinese immigrant patients affected by cancer and their caregivers. This paper reports on the development and acceptability assessment of a self-management intervention (WeCope) in terms of its scope, social and cultural relevance and sensitivity. METHODS: Using a community participatory approach in this qualitative study, patients, caregivers and community members took part in semi-structured focus groups or interviews in Cantonese, Mandarin or English to develop and provide feedback on the acceptability of 'WeCope'. Content analysis was performed on the transcripts using inductive (codes) and deductive (themes and categories) methods. RESULTS: Patients (n = 17), caregivers (n = 10) and community members (n = 2) participated. Four themes were developed, guided by the framework of cultural sensitivity in interventions: (1) content preference and satisfaction; (2) perceived usefulness and usability; (3) cultural relevance and acceptability; and (4) layout and presentation. Participants most commonly wanted more information about treatment-related issues (n = 14) and available support services (n = 14). CONCLUSION: Chinese patients and caregivers expressed overall satisfaction with the WeCope resource and provided suggestions for improvement, including provision of more treatment-related information and contact details for available support while reducing the overall resource length.

A systematic mixed studies review of fear of cancer recurrence in families and caregivers of adults diagnosed with cancer.

PURPOSE: Fear of cancer recurrence (FCR) may be equally prevalent, persistent and burdensome in cancer caregivers as in survivors. This systematic review evaluated FCR prevalence, severity, correlates, course, impact and interventions in cancer caregivers. METHODS: Electronic databases were searched from 1997 to May 2021. Two reviewers identified eligible peer-reviewed qualitative or quantitative studies on FCR in adult caregivers or family members of adult cancer survivors. The risk of bias was assessed using the Cochrane Risk of Bias tools for randomised and non-randomised studies and the Mixed-Methods Appraisal Tool. A narrative synthesis and thematic synthesis occurred on quantitative and qualitative studies, respectively. RESULTS: Of 2418 papers identified, 70 reports (59 peer-reviewed articles, 11 postgraduate theses) from 63 studies were included. Approximately 50% of caregivers experienced FCR. Younger caregivers and those caring for survivors with worse FCR or overall health reported higher FCR. Most studies found caregivers' FCR levels were equal to or greater than survivors'. Caregivers' FCR was persistently elevated but peaked approaching survivor follow-up appointments. Caregivers' FCR was associated with poorer quality of life in caregivers and survivors. Three studies found couple-based FCR interventions were acceptable, but had limited efficacy. CONCLUSIONS: FCR in caregivers is prevalent, persistent and burdensome. Younger caregivers of survivors with worse overall health or FCR are at the greatest risk. Further research on identifying and treating caregivers' FCR is required. IMPLICATIONS FOR CANCER SURVIVORS: Caregiver and survivor FCR are similarly impactful and appear interrelated. Addressing FCR may improve outcomes for both cancer caregivers and survivors.

Clinical trials knowledge and attitudes of Vietnamese- and Anglo-Australian cancer patients: A cross-sectional study.

AIM: Low participation in cancer clinical trials by culturally and linguistically diverse (CALD) patients limits access to cutting-edge treatments and generalizability of results. This is the first study exploring trials knowledge/attitudes and their association with trial participation in Vietnamese- and Anglo-Australian cancer patients. METHODS: Eligible patients diagnosed with cancer in the past 10 years were invited to complete a self-report questionnaire comprising validated measures of: trials knowledge and attitudes, preferred information amount, preferred decision-making involvement, health literacy, and past and future (i.e. hypothetical) trial participation. Multivariable linear regression evaluated correlates of trials knowledge/attitudes. Multinomial logistic regression estimated the relationship between trials knowledge/attitudes and possible future trial participation. RESULTS: Vietnamese-Australian participants (n = 50) had more negative attitudes regarding trials than Anglo-Australians (n = 100; B = -9.28; 95% confidence interval [CI], -17.60 to -0.97; P = 0.029), but similar knowledge (B = -0.91; 95% CI, -2.27 to 0.44; P = 0.18). Future trial participation was associated with positive attitudes (odds ratio [OR] = 1.08; 95% CI, 1.04-1.12; P < 0.001) and greater knowledge (OR = 1.30; 95% CI, 1.04-1.62; P = 0.02), but not Vietnamese background (OR = 0.95; 95% CI, 0.27-3.32; P = 0.93). CONCLUSION: Despite poorer attitudes regarding trials in Vietnamese-Australians, Vietnamese background was not associated with less likely future trial participation, suggesting low trial participation by CALD patients may be more due to opportunity barriers. Improving knowledge and attitudes may increase trial participation generally.

Chinese-Australian women with breast cancer call for culturally appropriate information and improved communication with health professionals.

BACKGROUND: For culturally and linguistically diverse patients, breast cancer presents complex physical, psychosocial, and health care challenges, often exacerbated by a lack of culturally appropriate information and communication barriers with the treating team (even with the help of interpreters). AIM: This qualitative study aims to broadly explore the experience of breast cancer and coping strategies utilized by Chinese-Australian women. METHODS AND RESULTS: Twenty-four Chinese-Australian women with breast cancer participated in either a semi-structured interview or a focus group conducted in participants' preferred language, audio-recorded, transcribed, and subjected to thematic analysis. Two prominent themes emerged, related to information seeking, and communication with health care professionals. The theme of information needs and seeking highlighted unmet information needs and the multiple sources that are consulted for information. The second theme, communication with health care professionals, language barriers, and preferences, identified varying degrees of involvement in treatment decision-making, preference for information and interactions in Cantonese or Mandarin, and problems with interpreter services. CONCLUSION: Chinese women with breast cancer face significant challenges in obtaining adequate information and can feel excluded from treatment decision-making. Women in this study expressed their eagerness for obtaining accurate information and engaging in open communication with their doctors. There is a need for culturally sensitive information resources and decision aids to enhance communication between Chinese migrant patients with cancer and health care professionals. Clinician participation in cultural awareness training is also recommended.