This study utilized a community based participatory research framework. This approach has previously been put forth as a useful research model for empowering patients and overcoming health inequities [29 (link)]. As part of a European network focused on CHH (COST Action BM1105 [30 ]), partnerships with online patient community leaders (i.e. moderators of online patient support sites) were developed to contribute to the study design, recruitment, and conduct of the study. We recognized patients as experts and these partners were actively involved in generating ideas as well as providing feedback, comments, and criticism in an iterative process to refine the questions and improve the language and clarity of the survey and focus group questions. This descriptive, multivariate correlational needs assessment study employed a sequential mixed-methods design. This approach (QUANT-Qual) started with an online survey and statistical analysis of the quantitative data (Figure 1 ). Subsequently, patient focus groups were conducted and discussions were analyzed using a qualitative data analysis. The intention behind employing this mixed-methods approach was to provide a deeper exploration of the unmet health needs of CHH men than would be possible by either method in isolation.
Men were targeted for recruitment as CHH is rare and male cases are 2–5 times more common than female cases [10 (link),11 (link)]. Men 18–70 years of age diagnosed with CHH [31 (link)] were included in the study. A random sampling (40% of subjects) were contacted to confirm diagnosis and those outside of the age range or who had other causes of hypogonadism were excluded from analyses. The study was publicized online via a closed/private CHH social media group (Facebook), CHH forum (chat room), a clinical trials registry [32 ], and the COST Action website [30 ]. Focus groups were held in concert with patient-support meetings that were planned jointly by patient community leaders and study investigators.
First, the quantitative arm included an online survey to collect demographic information and to assess healthcare literacy, health information seeking patterns, interactions with healthcare system/providers, and self-reported adherence to treatment/healthcare (Additional file1 ). To assess healthcare literacy we used a self-report method previously shown to correspond with lengthier gold standard literacy tests [33 (link),34 (link)]. Descriptive statistics, Chi square and Pearson product moment coefficients of correlation were performed on survey results. To evaluate the relative importance of the most frequently used sources of CHH information we performed Kruskall-Wallace one-way analysis of variance on ranks. SigmaStat (Systat Software Inc., San Jose, California, USA) was used for statistical analyses and a p < 0.05 was considered significant.
Second, the qualitative arm involved patient focus groups discussing issues and challenges related to living with CHH, patient-reported coping strategies and the acceptability of possible online interventions. Questions were derived from Pender’s Health Promotion Model [35 ] and developed with input from patient community leaders. Focus group transcripts were analyzed using NVivo10 (QSR International PSY Ltd., Melbourne Australia). Briefly, thematic analysis (coding) was conducted by two separate investigators (AD:DM) to identify categories of responses and themes emerging from the focus group discussions and discrepancies in coding as well as emergent categories were discussed until resolution was achieved. Iterative coding occurred until no further themes are identified, suggesting a saturation point has been reached. Additionally, connections between coded terms were mapped to examine connections within and between categories (i.e. whether or not certain themes appear together repeatedly) and those arising frequently and expansively were given particular emphasis [36 ].
The study was approved by the University of Lausanne ethics committee and informed consent was obtained from all participants. Participants in the online survey provided an electronic, opt-in format consent while focus group members provided written consent. All participants received investigator contact information to address questions/concerns and were given the option to provide an email address if they agreed to be contacted by the investigators for follow-up clarification.
Men were targeted for recruitment as CHH is rare and male cases are 2–5 times more common than female cases [10 (link),11 (link)]. Men 18–70 years of age diagnosed with CHH [31 (link)] were included in the study. A random sampling (40% of subjects) were contacted to confirm diagnosis and those outside of the age range or who had other causes of hypogonadism were excluded from analyses. The study was publicized online via a closed/private CHH social media group (Facebook), CHH forum (chat room), a clinical trials registry [32 ], and the COST Action website [30 ]. Focus groups were held in concert with patient-support meetings that were planned jointly by patient community leaders and study investigators.
First, the quantitative arm included an online survey to collect demographic information and to assess healthcare literacy, health information seeking patterns, interactions with healthcare system/providers, and self-reported adherence to treatment/healthcare (Additional file
Second, the qualitative arm involved patient focus groups discussing issues and challenges related to living with CHH, patient-reported coping strategies and the acceptability of possible online interventions. Questions were derived from Pender’s Health Promotion Model [35 ] and developed with input from patient community leaders. Focus group transcripts were analyzed using NVivo10 (QSR International PSY Ltd., Melbourne Australia). Briefly, thematic analysis (coding) was conducted by two separate investigators (AD:DM) to identify categories of responses and themes emerging from the focus group discussions and discrepancies in coding as well as emergent categories were discussed until resolution was achieved. Iterative coding occurred until no further themes are identified, suggesting a saturation point has been reached. Additionally, connections between coded terms were mapped to examine connections within and between categories (i.e. whether or not certain themes appear together repeatedly) and those arising frequently and expansively were given particular emphasis [36 ].
The study was approved by the University of Lausanne ethics committee and informed consent was obtained from all participants. Participants in the online survey provided an electronic, opt-in format consent while focus group members provided written consent. All participants received investigator contact information to address questions/concerns and were given the option to provide an email address if they agreed to be contacted by the investigators for follow-up clarification.
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