The impact of coronavirus disease 2019 on genitourinary and prostate cancer care and clinical trials: a qualitative exploration of the Australian and New Zealand experience.

Abstract: Purpose: This qualitative study aimed to understand the impact of the coronavirus disease 2019 pandemic from March to November 2020 on healthcare delivery and clinical trials for genitourinary (GU) cancers in Australia. Methods: Annually a pre‐conference workshop is hosted by the Australian New Zealand Urogenital and Prostate Cancer Trials Group for supportive care health professionals. In November 2020, those that selected to attend were invited to participate in a focus group. Workshop and focus group discussions were recorded and transcripts were analyzed thematically. Results: Seventy‐two individuals involved in GU cancer care and clinical trials took part. Participants described negative changes to GU cancer care and clinical trials from the pandemic due to reduced clinical services and increased wait times. Trial recruitment was paused temporarily during lockdowns, and standard treatment protocols were used to limit hospital visits. Trial process changes included electronic capture of informed consent, home delivery of oral medications, and delegations of assessments. These changes increased administrative activity for clinical trial teams and Human Research Ethics Committees. A transition to telehealth enabled continuity of service delivery and trials but reduced the opportunity for face‐to‐face patient consultations with increasing concern about the failure to detect supportive care needs. Conclusion: The pandemic has prompted a critical review of service delivery and clinical trials for people with GU cancers

Feasibility of an interactive patient portal in oncology : qualitative study

Background: Digital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. Objective: This study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. Methods: Participants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. Results: A total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants’ cancer treatment status, health literacy, and background. Conclusions: Participants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging

Psychological support for patients with cancer: evidence review and suggestions for future directions

This is a non-final version of an article published in final form in Hulbert-Williams, N. J., Beatty, L., & Dhillon. H. (2018). Psychological support for patients with cancer: evidence review and suggestions for future research. Current Opinion in Supportive & Palliative Care, 12(3), 276-292.Purpose of the review. Psychological distress and mental health comorbidity are common in cancer. Various therapeutic frameworks have been used for interventions to improve psychological wellbeing and quality of life in cancer patients with mixed results. This paper reviews contributions to that literature published since January 2017. Recent findings. The majority of new psychological intervention research in cancer has used Cognitive Behavioural Therapy or Mindfulness-Based Interventions. Cognitive behavioural Therapy has been considered a gold-standard intervention and recent evidence justifies continuation of this. Recent reviews call into question the validity of evidence for Mindfulness- Based Interventions. A smaller number of trials using Acceptance and Commitment Therapy, Meta-Cognitive Therapy, Dignity Therapy and Coaching have emerged, and whilst findings are promising, additional fully-powered trials are required. Weaker evidence exists for counselling, support-based, and Narrative Therapy interventions. Summary. Efficacious, timely and acceptable psychological interventions are a necessary component of comprehensive cancer care. There is some way to go before the evidence conclusively points towards which interventions work for which cancer groups and for which specific outcomes. Methodological limitations must be addressed in future trials; at the forefront remains the need for fully-powered, head-to-head comparison trials

I don't believe it, but I'd better do something about it: patient experiences of online 'heart age' risk calculators

Background: Health risk calculators are widely available on the internet, including cardiovascular disease (CVD) risk calculators that estimate the probability of a heart attack, stroke or death over a 5 or 10 year period. Some calculators convert this probability to 'heart age', where older heart age than current age indicates modifiable risk factors. These calculators may impact patient decision making about CVD risk management with or without clinician involvement, but little is known about how patients use them. Objectives: This study aimed to investigate patient experiences and understanding of online heart age calculators based on the Framingham Risk Equation used in clinical guidelines around the world. Methods: General Practitioners in New South Wales, Australia recruited 26 patients with CVD/lifestyle risk factors who were not taking cholesterol or blood pressure-lowering medication in 2012. Participants were asked to ‘think aloud’ while using two heart age calculators in random order, with semi-structured interviews before and after. Transcribed audio-recordings were coded and a Framework Analysis method was used. Results: Risk factor questions were often misinterpreted, reducing the accuracy of the calculators. Participants perceived older heart age as confronting, and younger heart age as positive but unrealistic. Unexpected or contradictory results (e.g. low percentage risk but older heart age) led participants to question the credibility of the calculators. Reasons to discredit the results included the absence of relevant lifestyle questions and impact of corporate sponsorship. However, the calculators prompted participants to consider lifestyle changes irrespective of whether they received younger, same or older heart age results. Conclusions: Online heart age calculators can be misunderstood and disregarded if they produce unexpected or contradictory results, but they may motivate lifestyle change anyway. Future research should investigate both the benefits and harms of communicating risk in this way, and how to increase the reliability and credibility of online health risk calculators.NHMR

Overdetection in breast cancer screening: Development and preliminary evaluation of a decision aid

Objective: To develop, pilot and refine a decision aid (ahead of a randomised trial evaluation) for women around age 50 facing their initial decision about whether to undergo mammography screening. Design: Two-stage mixed-method pilot study including qualitative interviews (n=15) and a randomised comparison using a quantitative survey (n=34). Setting: New South Wales, Australia. Participants: Women aged 43–59 years with no personal history of breast cancer. Interventions: The decision aid provides evidence-based information about important outcomes of mammography screening over 20 years (breast cancer mortality reduction, overdetection and false positives) compared with no screening. The information is presented in a short booklet for women, combining text and visual formats. A control version produced for the purposes of comparison omits the overdetection-related content. Outcomes: Comprehension of key decision aid content and acceptability of the materials. Results: Most women considered the decision aid clear and helpful and would recommend it to others. Nonetheless, the piloting process raised important issues that we tried to address in iterative revisions. Some participants found it hard to understand overdetection and why it is of concern, while there was often confusion about the distinction between overdetection and false positives. In a screening context, encountering balanced information rather than persuasion appears to be contrary to people’s expectations, but women appreciated the opportunity to become better informed. Conclusions: The concept of overdetection is complex and new to the public. This study highlights some key challenges for communicating about this issue. It is important to clarify that overdetection differs from false positives in terms of its more serious consequences (overtreatment and associated harms). Screening decision aids also must clearly explain their purpose of facilitating informed choice. A staged approach to development and piloting of decision aids is recommended to further improve understanding of overdetection and support informed decision-making about screening.National Health and Medical Research Counci

How information about overdetection changes breast cancer screening decisions: a mediation analysis within a randomised controlled trial

Objectives: In a randomised controlled trial, we found that informing women about overdetection changed their breast screening decisions. We now present a mediation analysis exploring the psychological pathways through which study participants who received the intervention processed information about overdetection and how this influenced their decision-making. We examined a series of potential mediators in the causal chain between exposure to overdetection information and women’s subsequently reported breast screening intentions. Design: Serial multiple mediation analysis within a randomised controlled trial. Setting: New South Wales, Australia. Participants: 811 women aged 48–50 years with no personal history of breast cancer. Interventions: Two versions of a decision aid giving women information about breast cancer deaths averted and false positives from mammography screening, either with (intervention) or without (control) information on overdetection. Main outcome: Intentions to undergo breast cancer screening in the next 2–3 years. Mediators: Knowledge about overdetection, worry about breast cancer, attitudes towards breast screening and anticipated regret. Results: The effect of information about overdetection on women’s breast screening intentions was mediated through multiple cognitive and affective processes. In particular, the information led to substantial improvements in women’s understanding of overdetection, and it influenced—both directly and indirectly via its effect on knowledge—their attitudes towards having screening. Mediation analysis showed that the mechanisms involving knowledge and attitudes were particularly important in determining women’s intentions about screening participation. Conclusions: Even in this emotive context, new information influenced women’s decision-making by changing their understanding of possible consequences of screening and their attitudes towards undergoing it. These findings emphasise the need to provide good-quality information on screening outcomes and to communicate this information effectively, so that women can make well-informed decisions. Trial registration number: This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ACTRN12613001035718) on 17 September 2013.This work was supported by the National Health and Medical Research Council of Australia through project grant number 1062389

Experiences of participants in a clinical trial of a novel radioactive treatment for advanced prostate cancer: A nested, qualitative longitudinal study

Objectives: Qualitative studies nested within clinical trials can provide insight into the treatment experience, how this evolves over time and where improved supportive care is required. The purpose of this qualitative study is to describe the lived experiences of men with advanced prostate cancer participating in the TheraP trial; a randomised trial of 177Lu-PSMA-617 compared with cabazitaxel chemotherapy. Methods: Fifteen men with advanced prostate cancer were recruited from the TheraP clinical trial with interviews conducted at three timepoints during the trial. An interpretative phenomenological approach was used, and interviews analysed using thematic analysis. This research paper reports the results from the mid-point, conclusion and follow up interviews, focusing specifically on participants\u27 experiences of trial participation. Results: Three themes were identified representing the lived experiences of men with advanced prostate cancer participating in the TheraP trial: (1) facing limited options; (2) anticipating outcomes and (3) coping with health changes. Conclusions: Men who enrol in clinical trial of anti-neoplastic treatments for prostate cancer need targeted psychological and supportive care that includes attention to unique aspects of the experience of having prostate cancer and being in a clinical trial. As part of their trial experience, men with advanced prostate cancer need to be regularly assessed for survivorship needs, fully informed, supported and referred to services for regular care and support across the trajectory of their disease. Trial registration: NCT03392428. Registered on 8 January 2018 (ANZUP1603)

Setting an International Research Agenda for Fear of Cancer Recurrence: an online delphi consensus study

This Document is Protected by copyright and was first published by Frontiers. All rights reserved. it is reproduced with permissionBackground: Fear of cancer recurrence (FCR) is common amongst cancer survivors. There is rapidly growing research interest in FCR but a need to prioritise research to address the most pressing clinical issues and reduce duplication and fragmentation of effort. This study aimed to establish international consensus among clinical and academic FCR experts regarding priorities for FCR research. Methods: Members of the International Psycho-oncology Society (IPOS) Fear of Cancer Recurrence Special Interest Group (FORwards) were invited to participate in an online Delphi study. Research domains identified in Round 1 were presented and discussed at a focus group (Round 2) to consolidate the domains and items prior to presentation in further survey rounds (Round 3) aimed at gaining consensus on research priorities of international significance. Results: Thirty four research items were identified in Round 1 and 33 of the items were consolidated into 6 overarching themes through a focus group discussion with FCR experts. The 33 research items were presented in subsequent rounds of the delphi technique. Twenty one participants contributed to delphi round 1, 16 in round 2 and 25 and 29 participants for subsequent delphi rounds. Consensus was reached for 27 items in round 3.1. A further 4 research items were identified by panellists and included in round 3.2. After round 3.2, 35 individual research items were ratified by the panellists. Given the high levels of consensus and stability between rounds no further rounds were conducted. Overall intervention research was considered the most important focus for FCR research. Panellists identified models of care that facilitate greater access to FCR treatment and evaluation of the effectiveness of FCR interventions in real world settings as the two research items of highest priority. Defining the mechanisms of action and active components across FCR/P interventions, was the third highest priority identified. Conclusions: The findings of this study outline a research agenda for international FCR research. Intervention research to identify models of care that increase access to treatment, are based on a flexible approach based on symptom severity and can be delivered within routine clinical care, were identified as research areas to prioritise. Greater understanding of the active components and mechanisms of action of existing FCR interventions will facilitate increased tailoring of interventions to meet patient need

Experiences of participants in a clinical trial of a novel radioactive treatment for advanced prostate cancer: A nested, qualitative longitudinal study

Objectives: Qualitative studies nested within clinical trials can provide insight into the treatment experience, how this evolves over time and where improved supportive care is required. The purpose of this qualitative study is to describe the lived experiences of men with advanced prostate cancer participating in the TheraP trial; a randomised trial of 177Lu-PSMA-617 compared with cabazitaxel chemotherapy. Methods: Fifteen men with advanced prostate cancer were recruited from the TheraP clinical trial with interviews conducted at three timepoints during the trial. An interpretative phenomenological approach was used, and interviews analysed using thematic analysis. This research paper reports the results from the mid-point, conclusion and follow up interviews, focusing specifically on participants’ experiences of trial participation. Results: Three themes were identified representing the lived experiences of men with advanced prostate cancer participating in the TheraP trial: (1) facing limited options; (2) anticipating outcomes and (3) coping with health changes. Conclusions: Men who enrol in clinical trial of anti-neoplastic treatments for prostate cancer need targeted psychological and supportive care that includes attention to unique aspects of the experience of having prostate cancer and being in a clinical trial. As part of their trial experience, men with advanced prostate cancer need to be regularly assessed for survivorship needs, fully informed, supported and referred to services for regular care and support across the trajectory of their disease