Developing a consensus statement for psychosocial support in active surveillance for prostate cancer

Abstract Purpose Our objective was to prioritise the psychosocial support needs of men on active surveillance for prostate cancer and to develop a consensus statement to provide guidance on best practice psychosocial support for men choosing active surveillance and their families. Subjects and methods We undertook a patient and public involvement Delphi process over two rounds, informed by qualitative data and a comprehensive literature review, to prioritise the information and support needs of men on active surveillance for prostate cancer. Two panels were surveyed, a patient/carer panel (n = 55) and a health care provider panel (n = 114). Based on the findings of the Delphi surveys, an expert active surveillance discussion group developed a consensus statement to guide best practice. Results Patients and health care professionals differed slightly in their ideas concerning priorities for active surveillance psychosocial support. Broadly, agreed priority areas included ‐patients being involved in decision‐making, continuity of care, more streamlined access to health care teams, improved understanding of the risk of prostate cancer progression and information and support provided through both health care professionals and peers. Based on the identified priorities, the expert discussion group agreed on 22 consensus statements for best practice in psychosocial care for active surveillance in respect of (1) principles of an active surveillance programme; (2) structure of consultations; (3) content of information and support; and (4) delivery of information. Conclusion This consensus statement provides a framework for patient‐focused psychosocial support, which, if adopted, should increase uptake and adherence to active surveillance among men with prostate cancer.


| INTRODUCTION
European guidelines suggest a large proportion of men with low risk prostate cancer (PCa) do not require immediate treatment but can be monitored-an approach known as active surveillance (AS). 1 However, despite the obvious lack of morbidity associated with a surveillance programme versus radical treatment, AS drop-out rates (up to 38%) remain high in men with no evidence of disease progression. 2 Several studies have shown that supportive and informational interventions aimed at men on AS have a favourable impact on adherence. Oliffe et al. 3 found that self-management strategies helped men to cope with the long-term uncertainty of AS, whereas the Prostate Cancer Lifestyle trial, which included exercise and attention to stress management, demonstrated an improvement in treatment-free survival on AS. 4 Goh et al. 5 found that men who felt they were receiving useful and consistent information were more satisfied and therefore more likely to continue on AS, while the UK-based ProtecT trial 6 found merit in consistency of personnel to support and inform patients. Despite this, the provision of extra information and psychological support for men on AS continues to be consistently highlighted as an area needing improvement. 7,8 The objective of this project was to agree on the priorities for psychosocial support and to translate these into a useable consensus statement to inform the development of future interventions to support men and their partners/families undergoing AS for PCa.

| Establishment of an expert reference group
An expert active surveillance discussion group (ASDG) was established to guide all aspects of this study from start to end. 9 This reference group included 13 participants: four men on AS, two men who had opted out of AS without evidence of progression, two partners, one representative from the local Patient and Public Involvement group, two health care professionals (HCPs, a Urologist and a specialist nurse) and two representatives from prostate charities.
Members did not receive any reimbursement. Figure 1 shows the flow and timing of the programme of work undertaken to arrive at this consensus statement. This paper describes the third and fourth stages, which includes the synthesis of evidence, the Delphi process and consensus. Stages 1 and 2 were reported in detail in previous publications. 2,10,11 The ASDG provided guidance on the overall design and gave feedback throughout all stages of the project.

| Synthesis of evidence
To inform the development of the statement of support needs for men on AS, we conducted a syntheses of results from our previous qualitative interviews with men who discontinued AS 10 and our mixed-methods systematic review. 11 We adopted the approach described by Voils et al. 12 to aggregate findings from both studies to develop summative statements to inform the Delphi process that followed. The ASDG reviewed all potential statements prior to inclusion in the Delphi surveys. We used an accepted modification of the Delphi process 14 in which panellists received a structured questionnaire based on synthesis of our previous literature review and qualitative study findings, with a subsequent round to consolidate rankings of statements'

| Delphi prioritisation survey
importance. Both rounds were conducted within an 8-week period to ensure continued engagement by participants. 15 The first survey was live for 2 weeks, followed by a 2-week analysis period. Round 2, conducted 10 weeks later, was available for 4 weeks. The survey was presented to participants in a block-randomisation format to avoid the influence of respondent fatigue. 16 Participants were asked to score each item on a scale from 1 (not important) to 7 (most important). The first round allowed participants to add further items as free text. First round results were reviewed and fed back to participants before the second round commenced.

| Consensus meeting
Following the Delphi process, members of the ASDG were invited to participate in a consensus meeting to agree on the priorities for support needs and translate these into a consensus statement to guide future development of interventions to increase participation and adherence in AS for PCa. This meeting was based on the nominal group technique, 19 which is a highly structured face-to-face group interaction to empower participants to share their opinions, with moderation by an independent expert in consensus methods.
Ulschak's 20 recommendation that 80% agreement be reached among members for consensus was amended to 70% agreement because only a few items achieved the higher level. This likely reflects the diverse experience and perspectives of members of the ASDG, including those of patients, carers, charity representatives and health care professionals. This level of consensus was considered appropriate in other Delphi studies. 21   Results from our qualitative interviews 10 identified additional factors that impact men's sense of well-being, leading to a reluctance to continue on AS. Key themes included negative experiences at diagnosis, continuing delays and anxieties relating to follow-up appointments, lack of information and structured support, poor communication from the care team, exclusion from shared decisionmaking and inflexibility within the system. A lack of information and support for family members and limited access to peers with similar experiences were also identified as potential barriers to remaining on AS. Table 1 shows the synthesis of findings from both the qualitative interviews and our systematic review, grouped into themes related to cancer characteristics, patient factors, family and social support, provider issues, health care organisation and practice and health policy

| Delphi surveys
Fifty-five people took part in the patient/carer surveys. Participants included 36 men currently on AS, 16 partners/family of men on AS and 3 men that were previously on AS. The median time on AS was F I G U R E 1 Schema presenting the phases of work undertaken to develop this consensus statement T A B L E 1 Themes identified via meta-aggregation and synthesis of data from qualitative interviews and mixed-methods systematic review were doctors and 52% were clinically active in South England, whereas 13% practised outside of the United Kingdom (Table S2). In reference to support and information required, there was agreement between patient/carer and HCP respondents regarding the importance of general education delivered by a HCP. Although the patient/carer group agreed on the importance of exercise and lifestyle advice, and hearing about the AS experience from public role models, they did not reach consensus regarding the method of delivery of information and support, with equal weighting given to webinars, seminars and printed information.
In reference to follow-up method, there was no specific agreement between patient/carer and HCP groups. The patient/carer group felt that the only important aspect of follow-up was being seen face to face, whereas the HCP group was more concerned that patients received consultation from a hospital doctor, nurse specialist and/or were seen in a specialist AS clinic. Patient/carer agreement on prioritising these three factors was moderate to low, with 60%, 47% and 58% agreement of importance, respectively. information and support; (4) Delivery of information (Table 3).

| DISCUSSION
There are no currently available national or international guidelines pertaining to psychosocial support in AS. Our Delphi process identified 22 priority statements for successful psychosocial support. These encompass promoting good physical and mental health while on AS  A more patient-centred approach to AS, as outlined in our consensus statement, is required to address men's information and support needs. Organisations such as National Health Service Improvement (an independent charity committed to better health and health care) and the Heart Foundation have proposed strategies for supporting self-management to improve health outcomes, based on the premise that if people are educated about their condition and feel confident of its management, promoting self-management will ultimately increase adherence to chosen treatments. 25 These include the development of 'stratified' models of care and support that take account of the needs of the patient in relation to the treatment received to achieve a more personalised approach leading to a greater degree of satisfaction. 26

| Strengths and limitations
Our findings of differences in the ranking of statements by the two panels demonstrate the importance of seeking both the opinions of health care professionals and patient and public engagement to identify priorities for AS psychosocial support. One criticism of the Delphi Offer face to face 'information and support seminar' given to a group of men on active surveillance (hospital based) 2 Offer face to face 'information and support seminar' given to a group of men on active surveillance (at a local community centre) 3 Signpost to reliable online websites/webinars 4 Offer/signpost (unbiased) to paper based information resources (from charities)

SUPPORTING INFORMATION
Additional supporting information may be found in the online version of the article at the publisher's website.