Is the European Crohn's and Colitis organisation (ECCO) e-guide an acceptable and feasible tool for increasing gastroenterologists' guideline adherence? A mixed methods evaluation.

BACKGROUND AND AIMS: Management of inflammatory bowel disease is constantly evolving, increasing the importance for gastroenterologists to keep up to date with guidelines. Traditional implementation strategies have had only small positive impacts on clinical practice. eHealth strategies such as the European Crohn's and Colitis Organisation e-guide may be beneficial for clinician decision making in keeping with guidelines. The aim of this study was to evaluate the feasibility and acceptability of the e-guide. METHODS: A mixed methods approach was used to evaluate feasibility and acceptability. Cognitive (think-aloud) interviews were conducted with Australian gastroenterologists while using the e-guide. Two clinical scenarios were developed to allow evaluation of various aspects of the e-guide. Content analysis was applied to the qualitative interview data and descriptive analysis to the quantitative and observational data. RESULTS: Seventeen participants completed the study. Data saturation were reached. The ECCO e-guide was largely feasible and acceptable, as demonstrated by most clinical questions answered correctly, 87% reaching the answer within 3 min, and most feeling it was useful, would be beneficial to their practice and would use it again. Issues raised included difficulties with website navigation, layout of the e-guide and difficulties with access (network firewalls, paid subscription required). CONCLUSIONS: The ECCO e-guide is largely acceptable and feasible for gastroenterologists to use. Aspects of the e-guide could be modified to improve user experience. This study highlights the importance of engaging end-users in the development and evaluation of clinician educational tools.

Finding My Way-Advanced: can a web-based psychosocial intervention improve the mental quality of life for women with metastatic breast cancer vs attention-control? Study protocol of a randomised controlled trial.

BACKGROUND: Women living with metastatic breast cancer (MBC) are at risk of significantly impaired quality of life (QOL), symptom burden, distress and fear of progression, and unmet needs, yet they face barriers to accessing evidence-based psychosocial treatments. Our group therefore developed Finding My Way-Advanced (FMW-A), a web-based self-guided psychosocial program for women with MBC. This study aims to assess its efficacy in improving mental and other QOL domains, distress, fear of progression, unmet needs, and health service utilisation. METHODS: The multi-site randomised controlled trial (RCT) will enrol 370 Australian participants. Eligible participants are adult (18 years +) women diagnosed with MBC, with a life expectancy of 6 months or more, with sufficient English-language literacy to provide informed consent. Participants will be identified, screened and referred from one of 10 Australian sites, or via self-referral in response to advertisements. Participants complete four online questionnaires: prior to accessing their program ('baseline'), 6 weeks later ('post-intervention'), then 3 months and 6 months post-intervention. Consenting participants will be randomised to either FMW-A (intervention), or Breast Cancer Network Australia's (BCNA) online/app resource My Journey (minimal intervention attention-control). This is a single-blind study, with randomisation computer-generated and stratified by site. FMW-A is a 6-module program addressing some of the most common issues experienced by women with MBC, with BCNA control resources integrated within the 'resources' section. All modules are immediately accessible, with an additional booster module released 10 weeks later. The primary outcome is mental QOL; statistical criteria for superiority is defined as a 4-point difference between groups at post-treatment. Secondary outcomes include other QOL domains, distress, fear of progression, health service use, intervention adherence, and user satisfaction. DISCUSSION: This will be the first adequately powered RCT of a self-directed online intervention for women with MBC. If efficacious, FMW-A will help address two national key priorities for management of MBC - enhancing QOL and reducing symptom burden. FMW-A has the potential to address unmet needs and overcome access barriers for this overlooked population, while reducing health system burden. TRIAL REGISTRATION: The study was registered prospectively with the ANZCTR on 29/10/2021. Trial ID ACTRN12621001482853p.  https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382714&isReview=true.

A Delphi-based approach to developing the contents of an online resource, Care Assist, for male caregivers of women with breast cancer.

OBJECTIVE: Informal male caregivers of women with breast cancer (BC) have significant psychological, emotional, and social burdens that are inadequately addressed by current face-to-face interventions. Online interventions overcome barriers that limit engagement with face-to-face interventions. This study aimed to develop the contents of Care Assist, an online supportive care resource for male caregivers of BC patients, through expert consensus. METHODS: A Delphi study comprising two survey rounds and an expert consultation was conducted. In Round 1, experts in BC care rated the importance of 25 content items. In Round 2, they re-rated content items that failed to reach consensus (i.e. 80% agreement) in Round 1 or were newly developed. Free-text responses were also collected. During expert consultation, the resource was reviewed and revised for clarity. Iterative refinement followed all rounds. Quantitative data was analysed descriptively, and qualitative data was analysed using content analysis. RESULTS: Twenty-two experts participated and reached consensus on 96% of items, with 217 comments provided on: (a) the perceived benefits of Care Assist to caregivers and care recipients, (b) recommendations of newly suggested content items, wording, and use of external links, and (c) concerns regarding information overload and need for tailoring. The expert consultation comments focused on clarifying scope, wording, and information tailoring. CONCLUSION: The rigorous Delphi process resulted in the content for a comprehensive online supportive care intervention for male caregivers. Information overload can be minimised through self-identification of needs and utilisation of eHealth to personalise the resource for the heterogeneous male caregiver population.

Survey of barriers to adherence to international inflammatory bowel disease guidelines: does gastroenterologists' confidence translate to high adherence?

BACKGROUND: Despite the availability of evidence-based inflammatory bowel disease (IBD) guidelines, suboptimal care persists. There is little published research assessing barriers to IBD guideline adherence. AIM: To identify barriers to IBD guideline adherence including gastroenterologists' knowledge and attitudes towards guidelines. METHODS: An online cross-sectional survey of 824 Australian gastroenterologists was conducted from April to August 2018, with 198 (24%) responses. A novel survey was developed that was informed by the theoretical domain's framework. RESULTS: Confidence in guideline recommendations was high; however, referral to them was low. The European Crohn's and Colitis Organisation guidelines were referred to most commonly (43.6%). In multivariate analysis, significant predictors of frequent versus infrequent guideline referral were: high confidence in the guideline (odds ratio (OR) 7.70; 95% confidence interval (CI): 2.43-24.39; P = 0.001), and low (≤10 years) clinical experience (OR 3.62; 95% CI: 1.11-11.79; P = 0.03). The most common barriers to guideline adherence were not having time (62%), followed by guideline specifics being difficult to remember (61%). Low confidence was reported in managing pregnancy and IBD (34%) and loss of response to therapy (29%). High confidence was reported in managing immunomodulators; however, only 43% answered the associated knowledge question correctly. CONCLUSION: Although gastroenterologists have high confidence in guidelines, they use them infrequently, primarily due to specifics being difficult to remember and lack of time. Self-reported confidence in an area of IBD management does not always reflect knowledge. An intervention targeting these barriers, for example, computer-based clinical decision support tools, might improve adherence and standardise care.

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.

Staff perspectives on the feasibility of a clinical pathway for anxiety and depression in cancer care, and mid-implementation adaptations.

BACKGROUND: Clinical pathways (CPs) are intended to standardise and improve care but do not always produce positive outcomes, possibly because they were not adapted to suit the specific context in which they were enacted. This qualitative study aimed to explore staff perspectives of implementation of a CP for routine screening, assessment, referral and management of anxiety and depression (the ADAPT CP) for patients with cancer, focussing on perceived feasibility of the CP and negotiated adaptations made during the implementation phase. METHODS: The ADAPT CP was implemented in 12 urban and regional oncology services in Australia. Services were randomised to receive core versus enhanced implementation strategies. Core sites received support until implementation commencement and could access progress reports. Enhanced sites received proactive, ongoing support during the 12-month implementation. Purposively selected staff were interviewed prior to implementation (n = 88) and 6 months later, half-way through the implementation period (n = 89). Monthly meetings with lead multi-disciplinary teams at the eight enhanced sites were recorded. Data were thematically analysed. RESULTS: Six overarching themes were identified: ADAPT is of high value; timing for introducing the CP and screening is difficult; online screening is challenging; a burden too much; no-one to refer patients to; and micro-logistics are key. While early screening was deemed desirable, diverse barriers meant this was complex, with adaptations made to time and screening location. Online screening prompted by email, seen as time-saving and efficient, also proved unsuccessful in some services, with adaptations made to in-clinic or phone screening, or repeated email reminders. Staff negative attitudes to ADAPT, time constraints, and perceived poor fit of ADAPT to work roles and flows, all impacted implementation, with key tasks often devolving to a few key individuals. Nevertheless, services remained committed to the ADAPT CP, and worked hard to create, review and adapt strategies to address challenges to optimise success. CONCLUSIONS: This study demonstrates the interactive nature of health service change, with staff actively engaging with, forming views on, and problem-solving adaptations of the ADAPT CP to overcome barriers. Obtaining staff feedback is critical to ensure health service change is sustainable, meaningful and achieves its promise of improving patient outcomes. TRIAL REGISTRATION: The study was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347.

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.

Do family meetings for hospitalised palliative care patients improve outcomes and reduce health care costs? A cluster randomised trial.

BACKGROUND: Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications. AIMS: To determine: (1) if family caregivers of hospitalised patients referred to palliative care who receive a structured family meeting report lower psychological distress (primary outcome), fewer unmet needs, improved quality of life; feel more prepared for the caregiving role; and receive better quality of end-of-life care; (2) if outcomes vary dependant upon site of care and; (3) the cost-benefit of implementing meetings into routine practice. DESIGN: Pragmatic cluster randomised trial involving palliative care patients and their primary family caregivers at three Australian hospitals. Participants completed measures upon admission (Time 1); 10 days later (Time 2) and two months after the patient died (Time 3). Regression analyses, health utilisation and process evaluation were conducted. RESULTS: 297 dyads recruited; control (n = 153) and intervention (n = 144). The intervention group demonstrated significantly lower psychological distress (Diff: -1.68, p < 0.01) and higher preparedness (Diff: 3.48, p = 0.001) at Time 2. No differences were identified based on quality of end of life care or health utilisation measures. CONCLUSIONS: Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry ACTRN12615000200583.

Acceptability and appropriateness of a clinical pathway for managing anxiety and depression in cancer patients: a mixed methods study of staff perspectives.

BACKGROUND: Clinical pathways (CPs) can improve health outcomes, but to be sustainable, must be deemed acceptable and appropriate by staff. A CP for screening and management of anxiety and depression in cancer patients (the ADAPT CP) was implemented in 12 Australian oncology services for 12 months, within a cluster randomised controlled trial of core versus enhanced implementation strategies. This paper compares staff-perceived acceptability and appropriateness of the ADAPT CP across study arms. METHODS: Multi-disciplinary lead teams at each service tailored, planned, championed and implemented the CP. Staff at participating services, purposively selected for diversity, completed a survey and participated in an interview prior to implementation (T0), and at midpoint (6 months: T1) and end (12 months: T2) of implementation. Interviews were recorded, transcribed and thematically analysed. RESULTS: Seven metropolitan and 5 regional services participated. Questionnaires were completed by 106, 58 and 57 staff at T0, T1 and T2 respectively. Eighty-eight staff consented to be interviewed at T0, with 89 and 76 at T1 and T2 (response rates 70%, 66% and 57%, respectively). Acceptability/appropriateness, on the quantitative measure, was high at T0 (mean of 31/35) and remained at that level throughout the study, with no differences between staff from core versus enhanced services. Perceived burden was relatively low (mean of 11/20) with no change over time. Lowest scores and greatest variability pertained to perceived impact on workload, time and cost. Four major themes were identified: 1) Mental health is an important issue which ADAPT addresses; 2) ADAPT helps staff deliver best care, and reduces staff stress; 3) ADAPT is fit for purpose, for both cancer care services and patients; 4) ADAPT: a catalyst for change. Opposing viewpoints are outlined. CONCLUSIONS: This study demonstrated high staff-perceived acceptability and appropriateness of the ADAPT CP with regards to its focus, evidence-base, utility to staff and patients, and ability to create change. However, concerns remained regarding burden on staff and time commitment. Strategies from a policy and managerial level will likely be required to overcome the latter issues. TRIAL REGISTRATION: The study was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347. https://www.anzctr.org.au/ .

Development and Feasibility of a Web-Based Decision Aid for Patients With Ulcerative Colitis: Qualitative Pilot Study.

BACKGROUND: Shared decision making (SDM) is becoming an important part of ulcerative colitis (UC) management because of the increasing complexity of available treatment choices and their trade-offs. The use of decision aids (DA) may be effective in increasing patients' participation in UC management but their uptake has been limited due to high attrition rates and lack of a participatory approach to their design and implementation. OBJECTIVE: The primary aim of this study is to explore the perspectives of Australian patients and their clinicians regarding the feasibility and acceptability of myAID, a web-based DA, in informing treatment decisions in UC. The secondary aim is to use the findings of this pilot study to inform the design of a cluster randomized clinical trial (CRCT) to assess the efficacy of the DA compared with usual care. METHODS: myAID, a DA was designed and developed using a participatory approach by a multidisciplinary team of clinicians, patients, and nonmedical volunteers. A qualitative pilot study to evaluate the DA, involving patients with UC facing new treatment decisions and inflammatory bowel disease clinicians, was undertaken. RESULTS: A total of 11 patients with UC and 15 clinicians provided feedback on myAID. Themes explored included the following: Acceptability and usability of myAID-myAID was found to be acceptable by the majority of clinicians as a tool to facilitate SDM, uptake was thought to vary depending on clinicians' approaches to patient education and practice, potential to overcome time restrictions associated with outpatient clinics was identified, presentation of unbiased information enabling patients to digest information at their own pace was noted, and potential to provoke anxiety among patients with a new diagnosis or mild disease was raised; Perceived role and usefulness of myAID-discordance was observed between patients who prioritized voicing preferences and clinicians who prioritized treatment adherence, and myAID facilitated early discussion of medical versus surgical treatment options; Target population and timing of use-greatest benefit was perceived at the time of initiating or changing treatment and following commencement of immunosuppressive therapy; and Potential concerns and areas for improvement-some perceived that use of myAID may precipitate anxiety by increasing decisional conflict and impact the therapeutic relationship between patient and the clinician and may increase resource requirements. CONCLUSIONS: These preliminary findings suggest that patients and clinicians consider myAID as a feasible and acceptable tool to facilitate SDM for UC management. These pilot data have informed a participatory approach to the design of a CRCT, which will evaluate the clinical efficacy of myAID compared with usual care. TRIAL REGISTRATION: Australian New Zealand Clinical Trial Registry ACTRN12617001246370; http://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12617001246370.

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.

Re-Engage: A Novel Nurse-Led Program for Survivors of Childhood Cancer Who Are Disengaged From Cancer-Related Care.

BACKGROUND: Survivors of childhood cancer often experience treatment-related chronic health conditions. Survivorship care improves survivors' physical and mental health, yet many are disengaged from care. Innovative models of care are necessary to overcome patient-reported barriers to accessing survivorship care and to maximize survivors' health. METHODS: We piloted a novel survivorship program, called "Re-engage," a distance-delivered, nurse-led intervention aiming to engage, educate, and empower survivors not receiving any cancer-related care. Re-engage involves a nurse-led consultation delivered via telephone/online to establish survivors' medical history and needs. Participants completed questionnaires at baseline, 1 month postintervention, and 6-month follow-up. RESULTS: A total of 27 survivors who had not accessed survivorship care in the last 2 years participated (median age, 31 years; interquartile range [IQR], 27-39 years); of which, 82% were at high-risk for treatment-related complications. Participation in Re-engage was high (75%) and there was no attrition once survivors enrolled. At 1 month postintervention, 92% of survivors reported that Re-engage was "beneficial," which all survivors reported at 6-month follow-up. Survivors' overall satisfaction with their care increased from 52% before Re-engage to 84% at 1 month postintervention. Survivors' mean self-efficacy scores remained similar from baseline to 1 month postintervention (b = -0.33, 95% CI, -1.31 to 0.65), but increased significantly from baseline to 6-month follow-up (b = 1.64, 95% CI, 0.28-3.00). At 6-month follow-up, 73% of survivors showed an increase in health-related self-efficacy compared with baseline. CONCLUSIONS: Re-engage is a highly acceptable and feasible intervention and promotes health-related self-efficacy, which is integral to survivors being advocates for their own health. Further empirical work is needed to evaluate the long-term efficacy of Re-engage. TRIAL REGISTRATION: ACTRN12618000194268.

Development and usability evaluation of an online self-management intervention for fear of cancer recurrence (iConquerFear).

OBJECTIVE: To develop and evaluate the usability of iConquerFear, an online self-management adaptation of an efficacious face-to-face therapist-delivered treatment for fear of cancer recurrence (FCR). METHODS: iConquerFear development was theory based and person based. Development was guided by Ritterband et al's behaviour change model for internet interventions. iConquerFear end users (cancer survivors) provided iterative feedback in accordance with Yardley et al's person-based approach to maximise engagement and usability. Online focus groups and cognitive interviews were conducted to evaluate the usability of iConquerFear. Discussions were recorded, transcribed verbatim, and thematically analysed. RESULTS: Five online FCR modules were developed. Twenty-three cancer survivors (47% of those eligible) participated; 11/23 (58%) were breast cancer survivors, and average age was 53 years (SD = 10.8). Thematic saturation was reached after six focus groups (n = 16) and seven individual think-aloud interviews. Thematic analysis produced five overarching themes: easy navigation essential; satisfaction and engagement with content; flexible access is key; normalising and empowering; and a useful first step. CONCLUSIONS: Online self-management interventions like iConquerFear have the potential to address the unmet supportive care needs reported by burgeoning numbers of cancer survivors. However, that potential may not be realised unless interventions are rigorously developed and user tested, as benefits are constrained by limited engagement. Themes from the usability testing of iConquerFear highlight the importance of developing flexible, tailored, interactive, and contextual online self-management interventions for people with cancer.

What are the attitudes of health professionals regarding patient reported outcome measures (PROMs) in oncology practice? A mixed-method synthesis of the qualitative evidence.

BACKGROUND: The adoption of Patient Reported Outcome Measures (PROMs) in cancer care has been widely advocated, but little is known about the evidence for the implementation of PROMs in practice. Qualitative research captures the perspectives of health professionals as end-users of PROMs and can be used to inform adoption efforts. This paper presents a systematic review and synthesis of qualitative research conducted to address the question: What are the attitudes of health professionals towards PROMs in oncology, including any barriers and facilitators to the adoption of PROMS, reported in qualitative evidence? METHODS: Systematic searches of qualitative evidence were undertaken in four databases and reviewed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies published in English between 1998 and 2018, which reported qualitative findings about the attitudes of health professionals working in oncology towards PROMs were eligible. Studies were assessed using the Critical Appraisal Skills Programme's Qualitative Research Checklist. A sentiment analysis was conducted on primary text to examine the polarity (neutral, positive or negative) of health professionals' views of PROMs. Qualitative meta-synthesis was conducted using a constant comparative analysis. RESULTS: From 1227 articles after duplicates were removed, with 1014 excluded against the screening criteria, 213 full text articles remained and were assessed; 34 studies met the inclusion criteria and were included. The majority of studies were of good quality. Sentiment analysis on primary text demonstrated an overall positive polarity from the expressed opinions of health professionals. The meta-synthesis showed health professionals' attitudes in four domains: identifying patient issues and needs using PROMs; managing and addressing patient issues; the care experience; and the integration of PROMs into clinical practice. CONCLUSIONS: From the accounts of health professionals, the fit of PROMs with existing practice, how PROMs are valued, capacity to respond to PROMs and the supports in place, formed the key factors which may impede or promote adoption of PROMs in routine practice. To assist policy-makers and services involved in implementing these initiatives, further evidence is required about the relationship between PROMs data collection and corresponding clinical actions. TRIAL REGISTRATION: International Prospective Register of Systematic Reviews (PROSPERO) CRD42019119447, 6th March, 2019.

Web-Based Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial.

BACKGROUND: Despite the acceptability and efficacy of e-patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. OBJECTIVE: This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. METHODS: Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. RESULTS: From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). CONCLUSIONS: Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s12885-018-4729-3.

The Role of Primary Care Physicians in Childhood Cancer Survivorship Care: Multiperspective Interviews.

BACKGROUND: Primary care physicians (PCPs) are well placed to provide holistic care to survivors of childhood cancer and may relieve growing pressures on specialist-led follow-up. We evaluated PCPs' role and confidence in providing follow-up care to survivors of childhood cancer. SUBJECTS, MATERIALS, AND METHODS: In Stage 1, survivors and parents (of young survivors) from 11 Australian and New Zealand hospitals completed interviews about their PCPs' role in their follow-up. Participants nominated their PCP for an interview for Stage 2. In Stage 2, PCPs completed interviews about their confidence and preparedness in delivering childhood cancer survivorship care. RESULTS: Stage 1: One hundred twenty survivors (36% male, mean age: 25.6 years) and parents of young survivors (58% male survivors, survivors' mean age: 12.7 years) completed interviews. Few survivors (23%) and parents (10%) visited their PCP for cancer-related care and reported similar reasons for not seeking PCP-led follow-up including low confidence in PCPs (48%), low perceived PCP cancer knowledge (38%), and difficulty finding good/regular PCPs (31%). Participants indicated feeling "disconnected" from their PCP during their cancer treatment phase. Stage 2: Fifty-one PCPs (57% male, mean years practicing: 28.3) completed interviews. Fifty percent of PCPs reported feeling confident providing care to childhood cancer survivors. PCPs had high unmet information needs relating to survivors' late effects risks (94%) and preferred a highly prescriptive approach to improve their confidence delivering survivorship care. CONCLUSION: Improved communication and greater PCP involvement during treatment/early survivorship may help overcome survivors' and parents' low confidence in PCPs. PCPs are willing but require clear guidance from tertiary providers. IMPLICATIONS FOR PRACTICE: Childhood cancer survivors and their parents have low confidence in primary care physicians' ability to manage their survivorship care. Encouraging engagement in primary care is important to promote holistic follow-up care, continuity of care, and long-term surveillance. Survivors'/parents' confidence in physicians may be improved by better involving primary care physicians throughout treatment and early survivorship, and by introducing the concept of eventual transition to adult and primary services. Although physicians are willing to deliver childhood cancer survivorship care, their confidence in doing so may be improved through better communication with tertiary services and more appropriate training.

Interpreting and Acting on the PRO Scores From the Patient-reported Outcomes for Personalized Treatment and Care (PROMPT-Care) eHealth System.

INTRODUCTION: Patient-reported Outcomes for Personalized Treatment and Care (PROMPT-Care) is the first eHealth system in Australia that is fully electronically integrated into hospital oncology information systems, enabling real-time, routine collection of patient-reported outcomes (PROs) to support and enable cancer patients to achieve and maintain improved health, well-being, and cancer outcomes. Five previously published papers detail the impetus for developing this eHealth system, its development, and testing of its acceptability and feasibility, the development of algorithms to standardize the cancer care pathways which underpin patient care, and the protocol for evaluating the efficacy of PROMPT-Care. METHODS: This manuscript provides "how-to" guidance to inform future system development, focusing on selecting relevant PROs and measuring them in cancer patients, score interpretation, and determining recommended care in response to scores which are above the predetermined threshold. DISCUSSION: Electronic PRO systems are increasingly used in cancer clinical care settings, with the potential to support timely patient-centered care when implemented appropriately. KEY POINTS: PRO selection should consider patient response burden, and prioritizing PROs that are amenable to clinical intervention. Having clear, evidence-based, care pathways, and actionable recommendations in response to above-threshold PRO scores facilitate PRO integration into the clinical workflow. Centers should determine thresholds for clinical action for each PRO which provide an acceptable balance between false positives and false negatives; and develop care pathway recommendations which consider the availability of local services and resources, are feasible in the clinical setting, clear, concise, manageable, based on evidence-based guidelines, and adaptable to local environments.

A psychological intervention (ConquerFear) for treating fear of cancer recurrence: Views of study therapists regarding sustainability.

OBJECTIVE: ConquerFear is a metacognitive intervention for fear of cancer recurrence (FCR) with proven efficacy immmediately and 6 months post-treatment. This qualitative study documented barriers and facilitators to the sustainability of ConquerFear from the perspective of study therapists. METHODS: Fourteen therapists who had delivered ConquerFear in a randomised controlled trial completed a semi-structured phone interview, reaching theoretical saturation. Themes from thematic analysis were mapped to the Promoting Action on Research Implementation in Health Services (PARiHS) implementation framework. RESULTS: Participants were 13 males and one female with, on average, 14 years psycho-oncology experience. Nine over-arching themes were identified, falling into three domains, which when present, were facilitators, and if absent, were barriers: evidence (intervention credibility, experienced efficacy, perceived need for intervention); context (positive attitude to and capacity for survivorship/FCR care, favourable therapist orientation and flexibility, strong referral pathways); and facilitation of implementation (intervention/service fit, intervention/patient fit, and training, support, and provided resources). CONCLUSIONS: ConquerFear is a sustainable intervention in routine clinical practise. Facilitators included a sound evidence base; a receptive context; good fit between the intervention, therapist orientation, and patient need; and flexibility of delivery. Where absent, these factors served as barriers. These results have implications for enhancing uptake of psycho-oncology interventions in routine care.

"It sort of hit me like a baseball bat between the eyes": a qualitative study of the psychosocial experiences of mesothelioma patients and carers.

PURPOSE: Mesothelioma is an insidious disease with a generally poor prognosis even after invasive treatment. This qualitative study aimed to explore the experiences of patients suffering from mesothelioma and their carers and their perceptions of how their needs may be addressed. METHODS: Eligible patients and carers were identified by a lung cancer care coordinator at each participating site, and invited to participate in one-on-one semi-structured telephone interviews (n = 5 patients, n = 3 carers), or in one of two focus groups (n = 3 patients, n = 3 carers). Discussions focusing on participants' experiences relating to physical, psychological, social, information and carer domains were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: The five major themes identified were (1) time of diagnosis is a particularly difficult period; (2) the timeliness, accuracy and balance of mesothelioma information is problematic; (3) coping strategies ranged from antagonism to acceptance; (4) the emotional and physical load of caring for the patient is significant and (5) carers need one-on-one support. CONCLUSION: Mesothelioma patients and their carers face significant challenges, particularly around the time of diagnosis and in the physical, psychological and social/practical domains. There is a clear need for additional information, delivered in a timely and psychologically sensitive manner, as well as for practical and emotional support. Quantitative research may shed greater light on the prevalence and severity of challenges and needs reported by participants, and determine the usefulness of resources such as case workers and dyadic coping interventions in addressing these.