Codesigning a patient support portal with health professionals and men with prostate cancer: An action research study

Abstract Introduction The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient‐reported outcome (PRO) comparator tool. Methods We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive‐content analysis. Results HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision‐making and side‐effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10% (n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision‐making and side‐effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal. Conclusions Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. Men with PCa would welcome the development of a portal to centralize support information and a PRO comparator tool to prompt health‐seeking behaviour. Future research will implement these findings in the development of a portal, and pilot and evaluate the portal within a population‐based sample. Patient or Public Contribution This project adopted a codesign approach including both men with PCa and HPs involved in PCa care. Men with PCa also formed part of the study's steering committee and consumer advisory groups. HPs were consulted in a serious of online focus groups. Subsequently, men with PCa and their support persons participated in workshops. Men with PCa were also involved in the preparation of this manuscript.


| INTRODUCTION
Prostate cancer (PCa) is the second most common cancer in men worldwide, with an estimated 1.1 million new cases diagnosed in 2012. 1 The 5-year relative survival rate in Victoria in 2014-2018 was 92%. 2 Yet, many men live with symptoms that affect their urinary, sexual and bowel function, impacting their quality of life (QoL). 3 In 2009, the Prostate Cancer Outcomes Registry of Victoria (PCOR-Vic) was established to monitor variation in patterns of presentation and care. In addition to collecting clinical information, the registry collects patient-reported outcomes (PROs) using the Expanded Prostate Cancer Index Composite . 4 This information is fed back to hospitals and clinicians to prompt action to address identified QoL issues and improve service delivery, but is not currently returned to men who complete the EPIC-26. An efficient mechanism to improve QoL among men with PCa at a population level may be to use PCOR-Vic to provide a personalized web interaction and allow self-management. Due to its wide coverage, PCOR-Vic can provide men with individual feedback, acting as a unique instrument for contact with men with PCa.
Patient portals provide an innovative opportunity to engage men in self-managing their disease by integrating PROs to prompt healthseeking behaviour; yet, little evidence exists about their utility in supporting men with PCa. A large UK population-based study of 35,000 men with PCa assessed functional outcomes (using the EPIC-26) and general health-related QoL 18-42 months after diagnosis. 5 This study informed the development of the 'Men like Me' portal, enabling men to see the outcomes of other men like them using the data from the study (controlled for age, stage of disease and treatment type). However, an evaluation of the portal is yet to be published. The 'Men like Me' portal used human-centred design to develop a personalized PRO dashboard through a series of iterative focus groups with men with PCA, HPs and design experts. 6 These focus groups provided guidance for optimizing the design of the PRO dashboard 6 as a means to providing feedback to impacted men. As such, developing a portal that provides information and resources customized to the needs of Australian men, building on the 'Men like Me' portal, offers the potential to support Australian men with PCa.
The aim of this qualitative action research study was to identify and integrate the perspective of healthcare professionals (HPs), men and their support persons on: 1. priority issues facing men with PCa, 2. barriers and enablers to accessing care and support information, 3. the acceptability of a PRO comparator tool and 4. the format, language and organization of information on a web portal ('BroSupPORT').

| MATERIALS AND METHODS
This study adopted a qualitative action research process to develop the BroSupPORT portal. Action research consists of four main phasesplanning, developing, acting and reflecting. 7 In this paper, we report on the first two phases of the action research process, which incorporates work related to both the focus groups and workshops, as shown in Figure 1. Phases 3-4 of the study will be outlined in a subsequent paper.

| Participants
Purposive sampling was used to recruit HPs treating, managing or supporting a man with PCa from four hospitals contributing to the PCOR-Vic and the Prostate Cancer Foundation Australia (PCFA). Given that focus groups were to be conducted online, it was agreed that the optimal sampling size of each focus group would be no more than 10, to allow the opportunity for active engagement and visibility of participants. A list of specialities including urologists, oncologists, nurses, physiotherapists, psychologists, general practitioners (GPs), radiotherapists and exercise physiologists was provided to the site principal investigator and they were asked to invite participation among these groups at urology multidisciplinary team meetings (MDMs) and via direct email to those specialties not attending MDMs. A snowballing approach was used to recruit other specialty group members.  took field notes at each workshop. Field notes were reviewed by the core project team weekly and used to develop content for subsequent workshops.

| Analysis
A range of analysis techniques were used to suit the unique activities and methods of each workshop. We arranged issues raised in Workshop 1 into categories described in Fitch's Supportive Care Framework 11 using MURAL, and descriptive-content analysis 12

| Phase 1: Planning
The focus group participant characteristics are described in Table 2.
Thirty-nine HPs attended focus groups, and two were interviewed.
Most (41%) were allied HPs, followed by medical professionals (36%) and hospital-based nurses (13%). Most HPs were recruited from public hospitals and worked in the metropolitan area.

| Focus group key findings
Seven key themes emerged from HP focus groups regarding important issues to consider when developing an information portal for men. Quotes corresponding to specific themes are presented in Table 3.

Shifting priorities for men
In the immediate 12-month period following treatment, HPs reported that men are initially concerned with dealing with the immediate side effects of treatment, such as urinary issues and sexual function, but that these change over time.

Information needs
HPs highlighted the importance of providing men with relevant and accessible information to inform treatment decision-making as well as side-effect management. This also included the format of the information, with several participants highlighting that men preferred video content as opposed to written information.

Multidisciplinary nature of managing the disease
To address the range of treatment side effects experienced by men during the survivorship stage of their PCa, several participants underlined the importance of a multidisciplinary approach to care.
Providing access to cancer-specific professionals was seen as critical to addressing the wide variety of issues that men face after treatment and was highlighted as an important inclusion in the portal.

Importance of support groups and connection
Across all focus groups and interviews, HPs signified the importance of men engaging with other men with PCa. Hearing from other men with PCa raises awareness of services or pathways with which men might not be familiar. HPs highlighted that often, men found it comforting to speak to other men with PCa. Support groups were commonly highlighted as providing men with opportunities to engage with other men with PCa and raising awareness of services such as cancer gyms, which provide a physical space for men to exercise as well as network with other men and HPs. HPs endorsed including stories from other men as a key feature in a portal.

Importance of partners and support persons
Partners were highlighted as playing a critical role in supporting men with PCa. Specifically, participants emphasized how partners often feel compelled to raise issues with HPs that men did not. Some HPs noted that without partners accompanying men in consultations, men would seldom engage in discussion. Conversely, some participants stated that partners attending consultations could act as a barrier for men in discussing sensitive topics with their HP.

Social determinants of health impacted access to care
Costs of treatment and ongoing costs were identified by HPs as causing an added burden and distress for some men, particularly in relation to use of sexual aids and medication to manage side effects of treatment. Several HPs raised the importance of considering the cultural needs of men when accessing information and care. Participants noted that some men preferred to speak to another male practitioner and with an HP who had a similar cultural background.
HPs working in regional areas highlighted the difficulty that men living in rural, regional and remote areas face in accessing support services, particularly PCa-specific specialists such as pelvic floor physiotherapists and continence nurses. Several HPs raised the challenge of raising sensitive and often stigmatized topics such as erectile dysfunction in the confines of a short consultation. Many were regarded as useful tools to assist men with low health literacy.
Disparities in health and technology levels, as well as access to the internet, were magnified in regional, rural and remote areas.
HPs conflicted on the usefulness of the comparator tool There were mixed views on the inclusion of a PRO comparator tool in the portal by HPs, with some reporting that it might alleviate feelings of isolation and provide men with assurance by comparing their outcomes against others who had received the same treatment and were of the same age and stage of disease. However, some HPs highlighted that the PRO comparator tool might create unnecessary distress among men whose outcomes were substantially worse than those of other men, that it might be difficult for men to interpret the graphs and terminology (e.g., normal vs. not normal or expected vs. not expected) and that they would be unable to support men in the aftermath of seeing the report. HPs working in regional settings expressed more concerned with including a PRO comparator tool than those in metropolitan settings.  Participants were provided with a list of strategies identified in Workshop 3 to address the top 10 priority issues and a summary of enablers and barriers to receiving high-quality care (Figures 2 and 3).
They were asked to consider ways of organizing the information and the categories under which information could be organized. Participants agreed on six different headings to help men easily navigate the portal and find information. Following this, participants in the workshop collectively used the Q-Sort methodology to place each issue under a respective category. 14 The sorting exercise enabled the group to reach consensus on the headings and content that will belong under each category. This process produced a proposed site map for the BroSupPORT web portal as shown in Multimedia Appendix S7.

| DISCUSSION
The objective of this study was to determine priority issues facing men with PCa, barriers and enablers to accessing care, format and organization of information on a portal and whether HPs and men with PCa would support the inclusion of a PRO comparator tool within the portal. We used a variety of data collection approaches including focus groups, interviews and codesign workshops. Focus group findings were used to inform workshop activities and content.
Barriers, enablers and recommendations to accessing high-quality PCa care were captured during both focus groups and workshops and were compared. While there was some overlap, an important finding of this study was that there were many unique views not shared between the two groups. The synthesis of this study resulted in a template design for a web portal by men.
Barriers and enablers to accessing supportive care have been widely cited in the literature by men with PCa, their partners, HPs and other care providers. [15][16][17][18][19][20][21] Studies have suggested that men may be reluctant to seek help from HPs because it is perceived as a threat to their social and personal identity 21 and that this reluctance increases with age. 22 In contrast, study participants were forthcoming with their experiences in workshops, perhaps reflecting greater acceptance of their diagnosis, that the large proportion of men in our study had a spouse and that men were well educated. 23 HPs and men with PCa highlighted the pivotal role that partners and support groups played in providing support. Support groups enable men to engage in their health with other similar men. 18,24 HPs and men with PCa in our study identified barriers to accessing supportive care to Abbreviations: ADT, androgen deprivation therapy; NCCN, national comprehensive cancer network; WWAS, watchful waiting or active surveillance. a Some data are not available as clinical knowledge is required, and could not be collected from the participants.
b Data may be incomplete due to data collection forms that were not returned.  [16][17][18]20,21 lack of motivation [16][17][18] and stigmas associated with wearing pads [19][20][21] were highlighted in our study as treatment side effects, and have been well documented in the literature. These side effects adversely impact men's ability to return to work and engage in relationships with others. 19,20 A promising finding of our study is that a substantial number of men with PCa already use online support resources and would welcome a portal to centralize support information to prompt healthseeking behaviour.
Our finding that informational needs are a high priority throughout care for men with PCa is concordant with the literature. 15,[25][26][27][28][29][30][31][32] Studies have shown that a lack of information may lead to uncertainty, anxiety and distress in some men. 30  presentation of the information. These concerns, mainly raised by regional HPs, may be attributed to anxiety around patients having poorer outcomes compared to their metropolitan counterparts. HPs practising in regional and rural areas may be reluctant for men to compare their outcomes to men who have been treated in metropolitan areas because of fear of not performing well, even if this is unfounded. As we only conducted focus groups in one regional health area, it is unclear whether these findings can be generalized to HPs from other regional areas. Further research is required to evaluate the risks associated with providing men with the ability to compare the PRO outcomes with other men through a patient portal.
This is the first study to use a codesign approach to inform the content of a patient support portal for men with PCa. Building on design principles used to develop the 'Men like Me' portal, 5 our study used codesign principles to incorporate, compare and contrast the perspectives of both HPs and men with PCa on how supportive care needs can be addressed through an online portal. By incorporating the views of HPs, men and support providers, the portal is arguably more likely to be supported and recommended by HPs to their patients. Through the support of HPs, a portal may help reduce the survivorship burden and gap in support provision for men with PCa.
Online conduct of focus groups and workshops may have increased attendance and the diversity of participants, reducing geographical restrictions for participants, especially due to the extraordinary circumstances presented during the pandemic. While the methods used in this study had to pivot from patient-facing to online, online workshops may have been more conducive for some men to share their experiences and issues with the research team in comparison to a face-to-face workshop due to the degree of anonymity that online workshops afford. 15 Yet, despite these strengths, there were also important limitations, particularly in relation to the bias of the included cohort in the project. Men in our study were, on average, older and had a reported a higher rate of surgery as their primary treatment compared to the Victorian population of men contributing to the PCOR-Vic. 42 Men who could not speak English were excluded from the study and we did not specifically undertake to understand views of men according to their sexual orientation and, as such, cannot comment on whether these factors impact the priorities, barriers and enablers and views of the comparator tool. Workshops were held during business hours, meaning that working men could not keep attending workshops.
Workshop participants were well educated, may have been more invested in their health, had more time to volunteer or may have displayed better knowledge of supportive care services than those who did not respond to the study invitation. Ultimately, these biases may impact the generalizability of our findings, and further investigation of these populations is warranted.

| CONCLUSION
Designing platforms that encourage patient self-management is important, considering the fragmentation of supportive care delivery for men with PCa. 15,43 This study outlines men's preferences regarding the content and format of information displayed on an online PCa support portal. The next phase of this study will involve evaluating the comparator tool and support information within the portal with a wider range of men. If the portal is deemed acceptable by men with PCa, further investigation may include capture of PROs and presentation of a comparison in real time.