The male perspective: A mixed methods study of the impact, unmet needs and challenges of caring for women with breast cancer.

OBJECTIVES: As a formative investigation toward the development of a supportive care intervention for male caregivers, this study explored the emotional impact, unmet needs and challenges experienced by men when caring for a woman with breast cancer. DESIGN: A cross-sectional mixed methods study, with an online survey and interviews. SAMPLE: A total of 89 participants completed the survey, of whom 13 completed interviews. The majority (93%) of participants were husbands of care recipients; of the care recipients, 75% had early stage breast cancer and 45% were diagnosed over 5 years ago. METHOD: Participants completed questionnaires assessing their emotional wellbeing, unmet needs and biopsychosocial challenges, with a sub-sample participating in subsequent interviews to elaborate on survey responses. FINDINGS: Emotional difficulty was reported by <25% of the sample, and 83% reported experiencing at least one unmet need (M = 81.5, SD = 33.2). Of the 39 biopsychosocial challenges presented, 100%, 86% and 73% reported "ever experiencing," "currently experiencing," and "ever needing help," respectively. Interviewed participants echoed the most reported needs and challenges as changes to sex life, fear of recurrence and lack of practical information. CONCLUSIONS: Male cancer caregivers experience diverse challenges and require psychological support and practical information using both online and offline approaches to support their caregiving responsibilities. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Healthcare professionals can support male caregivers by: being aware of their information and psycho-social needs; directing caregivers to online interventions for additional information; and facilitating the provision of online psycho-sexual and FCR support.

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.

Psychosocial Experiences, Challenges, and Coping Strategies of Chinese-Australian Women with Breast Cancer.

OBJECTIVE: Chinese migrant women with breast cancer are at risk of poorer psychosocial outcomes. However, little is known about the cancer-related challenges experienced by these women, or how they self-manage their concerns. This qualitative study aims to explore the experience of breast cancer for Chinese-Australian women and gain insight into their coping behaviors. METHODS: Twenty-four Chinese-Australian women, previously diagnosed with breast cancer, participated in a semi-structured interview or focus group session, conducted in the participant's preferred language. Qualitative data were subjected to thematic analysis. RESULTS: Three main themes emerged, reflecting the psychological impact of the diagnosis, the challenges experienced, and the use of social support and other coping behaviors. The theme of psychological impact highlighted the emotional toll of diagnosis and the ongoing anxiety surrounding the fear of cancer recurrence. The theme of challenges identified stressors relating to treatment side effects and the need for psychological support. The social support and coping theme identified the various levels of social support participants received and how Chinese-Australian women may limit their use of social support to protect others. Participants used several behavioral (e.g., diet and exercise) and cognitive (e.g., reframing) strategies to cope with their cancer experience. CONCLUSIONS: Chinese-Australian women with breast cancer face significant challenges that impact on their psychological well-being. Varying levels of social support, and the desire to protect others through self-sacrifice, may reflect the cultural expectations of women. The results highlight the need for cultural understanding when developing strategies that optimally support Chinese migrant women with breast cancer.

What Male Caregivers of Women With Breast Cancer Want in an Online Intervention: A Qualitative Study.

The diversity in cancer caregiver responsibilities often leaves caregivers feeling ill-prepared for their role. To inform the development of an online caregiver training intervention, we examined the views of men caring for a woman with breast cancer on intervention mode, timing, and content preferences. Thirteen men participated in a qualitative interview. The findings reveal that an online intervention should include educational content and psychological support, be interactive and personalized, and be available from the point of diagnosis. There is encouraging support for an online caregiver training intervention that covers numerous topics and is available for men to tailor how they use the content based on their individual needs.

Exploring levels and correlates of health literacy in Arabic and Vietnamese immigrant patients with cancer and their English-speaking counterparts in Australia: a cross-sectional study protocol.

INTRODUCTION: For immigrants diagnosed with cancer, the stress of a cancer diagnosis and treatment can be amplified by unfamiliarity with the health system, lack of culturally and linguistically appropriate information, and inability to communicate efficiently and accurately with the treating team. Lower levels of health literacy may be one factor underlying poorer outcomes among immigrant patients with cancer, but there have been few studies exploring this issue to date. This study aims to investigate the levels and correlates of health literacy in two immigrant populations affected by cancer and their English-speaking counterparts. METHODS AND ANALYSIS: Levels and correlates of health and eHealth literacy will be evaluated using a cross-sectional self-report questionnaire. Eligible, English, Arabic and Vietnamese patients with cancer and survivors (n=50 of each language group) will be invited to complete a questionnaire in their preferred language containing the Health Literacy Questionnaire, the eHealth Literacy Scale and study-specific questions assessing potential correlates of poor health literacy, including gender, age, education level, acculturation into Australian society and number of chronic illnesses.Multivariable logistic regression will be used to identify potential approaches to support effective communication with healthcare providers and preferred methods for assessing patient-reported outcomes (PROs) to support culturally appropriate cancer care.The outcomes of this study will be used to better meet the needs of immigrant populations, including the tailoring of interventions appropriate to different health literacy levels. Outcomes will also inform strategies for PRO assessment to inform unmet needs and to address Australian healthcare system challenges to meet the needs of immigrant populations. ETHICS AND DISSEMINATION: The study was reviewed and approved by the Human Research Ethics Committee of South Western Sydney Local Health District (approval number: HREC/16/LPOOL/650). Results from the study will aim to be published at international conferences and in peer-reviewed journals.

Study protocol for a controlled trial of an eHealth system utilising patient reported outcome measures for personalised treatment and care: PROMPT-Care 2.0.

BACKGROUND: Routine assessment and clinical utilisation of patient-reported outcome (PRO) measures can lead to improved patient outcomes. The PROMPT-Care eHealth system facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions, patient self-management, and shared care. Pilot testing demonstrated acceptability and feasibility of PROMPT-Care Version 1.0. This study aims to implement PROMPT-Care Version 2.0 and determine its efficacy in reducing emergency department (ED) presentations, and improving chemotherapy delivery and health service referrals, compared to usual care. METHODS: Groups eligible to participate in the intervention arm of this controlled trial are patients receiving cancer care (including follow-up). PROMPT-Care patients will complete monthly assessments (distress, symptoms, unmet needs) until voluntary withdrawal or death. In Version 1.0, the care team accessed patients' clinical feedback reports in 'real time' to guide their care, and patients received links to support their self-management, tailored to their PRO responses. Version 2.0 was extended to include: i) an additional alert system notifying the care team of ongoing unresolved clinical issues, ii) patient self-management resources, and iii) an auto-populated Treatment Summary and Survivorship Care Plan (SCP). The control population will be patients extracted from hospital databases of the general cancer patient population who were seen at the participating cancer therapy centres during the study period, with a ratio of 1:4 of intervention to control patients. A minimum sample size of 1760 (352 intervention and 1408 control) patients will detect a 14% reduction in the number of ED presentations (primary outcome) in the PROMPT-Care group compared with the control group. Intervention patients will provide feedback on system usability and value of the self-management materials; oncology staff will provide feedback on usefulness of PROMPT-Care reports, response to clinical alerts, impact on routine care, and usefulness of the SCPs; and GPs will provide feedback on the usefulness of the SCPs and attitudes towards shared-care models of survivorship care planning. DISCUSSION: This study will inform the PROMPT-Care system's impact on healthcare utilisation and utility as an alternative model for ongoing supportive care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ( ACTRN12616000615482 ) on 12th May 2016 ( www.anzctr.org.au ).

The development of an online intervention (Care Assist) to support male caregivers of women with breast cancer: a protocol for a mixed methods study.

INTRODUCTION: It is projected that 17 730 women will be diagnosed with breast cancer in Australia in 2017, with 3114 of these predicted to be fatal. Caregiving for a person with cancer can significantly impact caregivers' physical and mental health. Many caregivers feel ill-prepared for this role, especially when care involves complex medical needs accompanied by the psychological challenges experienced following a cancer diagnosis. METHODS AND ANALYSIS: This study employs a convergent, parallel, mixed methods design combining an online survey with an optional interview. Eligible, consenting participants will be invited to participate in a survey to examine (1) participants' unmet needs, (2) challenges experienced throughout the cancer journey, (3) perceived self-efficacy to determine participants' level of confidence in undertaking caregiver tasks, (4) views regarding suitable content to include in a caregiver training intervention, (5) preferred method of intervention delivery (ie, website, smartphone application and/or interactive video), and (6) preferences for the timing of delivery of the intervention content (ie, ability to choose a module, access to the entire content or have a set order in which they receive the information). Caregivers will be eligible to participate if they (1) are male, (2) have previously cared for or are currently caring for a woman with breast cancer, (3) are aged over 18 years, and (4) do not currently suffer from a cognitive impairment or mental health condition (ie, depression, anxiety). Data analysis will include examination of differences in psychological outcomes and needs based on demographic variables, and mediation analysis to explore whether self-efficacy mediates the relationship between challenges, unmet needs and distress. Qualitative data will be analysed using thematic analysis. ETHICS AND DISSEMINATION: The study was reviewed and approved by two human research ethics committees within Australia. We anticipate two to three publications may be developed from the study.

eHealth System for Collecting and Utilizing Patient Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care) Among Cancer Patients: Mixed Methods Approach to Evaluate Feasibility and Acceptability.

BACKGROUND: Despite accumulating evidence indicating that collecting patient-reported outcomes (PROs) and transferring results to the treating health professional in real time has the potential to improve patient well-being and cancer outcomes, this practice is not widespread. OBJECTIVE: The aim of this study was to test the feasibility and acceptability of PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care), a newly developed electronic health (eHealth) system that facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions and patient self-management, and data retrieval to support ongoing evaluation and innovative research. METHODS: We developed an eHealth system in consultation with content-specific expert advisory groups and tested it with patients receiving treatment or follow-up care in two hospitals in New South Wales, Australia, over a 3-month period. Participants were recruited in clinic and completed self-report Web-based assessments either just before their upcoming clinical consultation or every 4 weeks if in follow-up care. A mixed methods approach was used to evaluate feasibility and acceptability of PROMPT-Care; data collected throughout the study informed the accuracy and completeness of data transfer procedures, and extent of missing data was determined from participants' assessments. Patients participated in cognitive interviews while completing their first assessment and completed evaluation surveys and interviews at study-end to assess system acceptability and usefulness of patient self-management resources, and oncology staff were interviewed at study-end to determine the acceptability and perceived usefulness of real-time PRO reporting. RESULTS: A total of 42 patients consented to the study; 7 patients were withdrawn before starting the intervention primarily because of changes in eligibility. Overall, 35 patients (13 on treatment and 22 in follow-up) completed 67 assessments during the study period. Mean completeness of patient-reported data was 93%, with 100% accuracy of data transfer. Ten patients completed cognitive interviews, 28 completed evaluation surveys, and 14 completed evaluation interviews at study-end. PROMPT-Care patient acceptability was high-100% (28/28) reported the time to complete the Web-based assessments (average 15 min) as about right, most willing to answer more questions (79%, 22/28 yes), 96% (27/28) found the Web-based assessment easier or same as completing a paper copy, and they valued the self-management resources . Oncology staff (n=5) also reported high acceptability and potential feasibility of the system. CONCLUSIONS: Patients and oncology staff found the PROMPT-Care system to be highly acceptable, and the results suggest that it would be feasible to implement it into an oncology setting. Suggested modifications to the patient assessment survey, clinician access to the reports, and system requirements will be made as part of the next stage of large-scale testing and future implementation of the system as part of routine care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN1261500135294; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369299&isReview=true (Archived by WebCite at http://www.webcitation.org/6lzylG5A0).

Development and Feasibility Testing of PROMPT-Care, an eHealth System for Collection and Use of Patient-Reported Outcome Measures for Personalized Treatment and Care: A Study Protocol.

BACKGROUND: Patient-reported outcome (PRO) measures have been used widely to screen for depression, anxiety, and symptoms in cancer patients. Computer-based applications that collect patients' responses and transfer them to the treating health professional in real time have the potential to improve patient well-being and cancer outcomes. OBJECTIVE: This study will test the feasibility and acceptability of a newly developed eHealth system which facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions and patient self-management, and data retrieval to support ongoing evaluation and innovative research. METHODS: The eHealth system is being developed in consultation with 3 overarching content-specific expert advisory groups convened for this project: the clinical advisory group, technical advisory group, and evaluation advisory group. The following work has already been completed during this phase of the study: the Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care) eHealth system was developed, patient-reported outcomes were selected (distress, symptoms, unmet needs), algorithms to inform intervention thresholds for clinical and self-management were determined, clinician PRO feedback summary and longitudinal reports were designed, and patient self-management resources were collated. PROsaiq, a custom information technology system, will transfer PRO data in real time into the hospital-based oncology information system to support clinical decision making. The PROMPT-Care system feasibility and acceptability will be assessed through patients completing PROMPT-Care assessments, participating in face-to-face cognitive interviews, and completing evaluation surveys and telephone interviews and oncology staff participating in telephone interviews. RESULTS: Over the course of 3 months, the system will be pilot-tested with up to 50 patients receiving treatment or follow-up care and 6 oncology staff at 2 hospitals in New South Wales, Australia. Data will be collected to determine the accuracy and completeness of data transfer procedures, extent of missing data from participants' assessments, acceptability of the eHealth system and usefulness of the self-management resources (via patient evaluation surveys and interviews), and acceptability and perceived usefulness of real-time PRO reporting (via oncology staff interviews) at the completion of the pilot phase. CONCLUSIONS: This research investigates implementation of evidence into real world clinical practice through development of an efficient and user-friendly eHealth system. This study of feasibility and acceptability of the newly developed eHealth system will inform the next stage of larger scale testing and future implementation of the system as part of routine care. CLINICALTRIAL: Australian New Zealand Clinical Trials Registry ACTRN1261500135294; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369299&isReview=true (Archived by WebCite at http://www.webcitation.org/6lzylG5A0).