The value of prostate cancer support groups: a pilot study of primary physicians’ perspectives

Following review by the University of British Columbia’s Behavioural Research Ethics Board’s approval, a non-probability convenience sample of Canadian-based PPs was recruited in two ways. In the first week of launching the survey questionnaire (SQ) 14 subjects responded to advertisements and completed the survey online. Shortly thereafter, the study lead (second author) provided a brief background and the purpose of the study ahead of inviting approximately 1,400 CME delegates at the 2012 St. Paul’s Hospital Continuing Medical Education (CME) conference, Vancouver, British Columbia to complete the SQ. Two research staff distributed hard copy SQs and postcard flyers with details for accessing the SQ online at the CME conference and 126 attendees completed the survey in hard copy (n = 93) and online (n = 33). All participants were offered an honorarium of a $50 gift card as an incentive acknowledging their contribution to the study. For the pilot study there were no specific exclusion criteria and this group was selected as it represented a diverse range of PPs from a variety of provinces and urban and rural areas who could be expediently accessed to provide some initial data.

The instrument selected to solicit the PP’s views was composed of a 56-item questionnaire based on an existing Australian study tool [26]. This tool, was developed from findings drawn from qualitative interviews with Australian-based HCPs, and subsequently pilot-tested and validated with 36 PCa specialists in 2006. We incorporated five demographic questions and six sets of attitudinal items to measure beliefs about: positive influences of PCSGs; negative influences of PCSGs; reasons for attending PCSGs; the attributes of effective PCSGs; and the value of face-to-face and web-based PCSGs. Each set of attitudinal items included 5–9 questions that were each rated by respondents using a 5-point Likert scale (where 1 = strongly disagree and 5 = strong agree). An open-ended question to provide additional information was also included in the survey: “Are there any other comments you would like to make about prostate cancer support groups and/or this survey?” This instrument is available from the researchers on request. Descriptive univariate statistics were used to analyze the survey responses using median scores (being more appropriate for ordinal Likert data). An interpretive content analysis of responses to the open-ended questions was also undertaken and the participant’s responses were read, coded and analyzed to identify and report key thematic elements and patterns emerging from the data.

Respondents provided ratings of seven features of PCSGs that were potentially positive influences on men’s adjustment to PCa (Figure 1). The ratings of these features were uniformly high. Access to information and community support were identified as the biggest benefits of attendance, whilst friendship and reassurance were the least strongly endorsed. Yet this finding is relative, as 80% of the respondents agreed or strongly agreed that these latter features also had a positive effect on men’s adjustment to PCa, indicating they were still perceived as beneficial.

PPs rated nine items related to possible negative influences of PCSGs including, meeting with dominant members who push their own views, dissemination of inaccurate information, hearing negative experiences, creating conflict over treatment decisions, promoting a specific clinician, creating confusion, supplying irrelevant information, causing confrontation and promoting a single therapy. The median response for all of these items was 3 (neutral) with no specific negative factors being singled out as particularly influential. Nevertheless, some negative perceptions of the value of PCSGs did arise in the open-ended responses, and are discussed below.

PPs rated five items in the survey related to why men attend PCSGs. The most highly endorsed reason to attend PCSGs was to gain information (median of 5), followed by discussion of PCa and therapies, and reassurance (median of 4; see Figure 2). This appears to be consistent with the findings concerning positive influences of PCSGs, where groups act as information trading resources and this feature is a primary motivator for attendance. There appeared to be less agreement on the value of social interaction and helping others to help promote PCSG attendance.

Perceived reasons for not attending PCSGs were assessed with 9 items in the survey (see Figure 3). Privacy and ignorance of what PCSGs could offer were the most clearly endorsed reasons for not attending PCSGs (median of 4), illustrating concerns that men don’t want to discuss their problems with others, and also a perceived lack of patient’s knowledge about the groups. Denial, a desire to move past the PCa experience, a concern they may feel “indebted” and a perceived weakness in sharing emotion were also highly endorsed by PPs (median of 4) as reasons why some men might not want to attend PCSGs. Several respondents in the open-ended responses also identified language as a potential barrier to attendance.

Respondents were asked to rate six items designed to assess their views on the characteristics of effective face-to-face PCSGs (see Figure 4). Avoiding bias by not promoting one view of treatment was the most highly endorsed characteristic of effective PCSGs (median rating of 5). Having a trained facilitator, discussion of a diversity of therapies, having a range of different health profession’s input, getting support from other health organizations, and being patient driven were also generally agreed as the most important characteristics for group success (median rating of 4).

Subjects were also asked to consider a range of aspects of Web-based PCSGs, and consider what they thought would be most effective. They rated the seven items in this question positively (median of 4; see Figure 5). Provision of summarized PCa information was identified as the most essential feature of effective web-based PCSGs, closely followed by the provision of multimedia evidence-based HCP presentations. Facilitation fostering camaraderie was also highly valued, as was Web 2.0 interactivity. Over 60% thought that a separate web area for men would be important and a login should not be required. More mixed views with no consensus were evident as to whether the website should be led by a PCa survivor.

Sixty-three of the respondents shared additional insights via written comments. Table 2 presents the five broad themes along with illustrative quotes derived from the content analysis of the open-text comments.

The effective marketing of PCSGs was a significant theme as several respondents commented on the need for this. Many subjects mentioned the importance of increasing professional and public awareness of PCa and PCSGs to reduce stigma and break with male stereotypes. One PP noted that “…patients don’t know where to go and MDs don’t know where to refer.” Specific suggestions included having PCa and PCSGs-related pamphlets and written resources, or posters in multiple languages in PP offices. One PP confessed that he had had never recommended PCSGs to PCa patients, because he was not aware of the existence of PCSGs.

The need for inclusivity in PCSGs, particularly for PCSGs that cater to specific ethnic groups and partners/caregivers, was also highlighted. Several respondents suggested that partners and caregivers should be encouraged to attend and invited to ask questions and share their experiences. In contrast, privacy was also a significant concern for PCSG effectiveness. Several respondents recognized men’s reluctance to engage health services and highlighted the potential for web-based PCSGs to help overcome men’s concerns about confidentiality and anonymity (particularly in rural communities).

Accessibility to PCSGs in local communities and the need for web-based PCSGs to reach specific sub-groups including young, blue-collar, and rural based PCa patients with limited access to healthcare were highlighted. Several respondents expressed concerns about the elderly and their limited access to the Internet. There were also concerns that older PCa patients have limited computer literacy and/or access to the Web (see Table 2).

In agreement with the Likert responses, respondents saw a balanced range of health professionals’ input as a key factor and that patient-centred PCSGs were key to success. However, this did not necessarily translate to seeing benefits in having PCSGs actually led by PCa survivors, as some commented they thought this might not necessarily be productive.

Respondents also agreed that PCSGs educate PCa patients and raise awareness on a range of important topics including prognosis, up-to-date treatment options, and side effects.

As an inductive exploratory pilot study with a population drawn from a convenience sample predominately made up of conference attendees, we do not know if the findings are generalizable to other PPs practicing within or outside Canada. The web-based survey approach also has limitations in terms of technological issues (lack of technological familiarity on the part of respondents or their willingness to use a computer to complete the survey, and browser incompatibility problems). That only 36% of the participants had referred patients to PCSGs, whilst 56% had no formal linkages to PCSGs can also be considered a limitation of this initial work. Nevertheless, no specific problems arose with the survey methodology or content and amid these limitations this foundational work indicates that PPs may need to be encouraged to raise awareness about PCSGs among PCa patients.