Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support

Abstract

Background: Patients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the unmet health and informational needs of CHH patients and (iii) assess patient acceptability regarding patient-centered, web-based interventions to bridge shortfalls in care.

Methods: A sequential mixed-methods design was used: first, an online survey was conducted to evaluate health promoting behavior and identify unmet health and informational needs of CHH men. Subsequently, patient focus groups were held to explore specific patient-identified targets for care and to examine the acceptability of possible online interventions. Descriptive statistics and thematic qualitative analyses were used.

Results: 105 male participants completed the online survey (mean age 37 ± 11, range 19-66 years) representing a spectrum of patients across a broad socioeconomic range and all but one subject had adequate healthcare literacy. The survey revealed periods of non-adherence to treatment (34/93, 37%) and gaps in healthcare (36/87, 41%) exceeding one year. Patient focus groups identified lasting psychological effects related to feelings of isolation, shame and body-image concerns. Survey respondents were active internet users, nearly all had sought CHH information online (101/105, 96%), and they rated the internet, healthcare providers, and online community as equally important CHH information sources. Focus group participants were overwhelmingly positive regarding online interventions/support with links to reach expert healthcare providers and for peer-to-peer support.

Conclusion: The web-based needs assessment was an effective way to reach dispersed CHH patients. These individuals often have long gaps in care and struggle with the psychosocial sequelae of CHH. They are highly motivated internet users seeking information and tapping into online communities and are receptive to novel web-based interventions addressing their unmet needs.

Figures

Figure 1

Study schema. Schematic depicting the sequential explanatory mixed-methods design. (A) First, a quantitative online survey was conducted and statistical analysis performed. (B) Subsequently, qualitative focus groups were conducted to explore the survey findings in detail and identify potential explanatory mechanisms. Asterisks note study stages involving participation of patient community leaders.

Figure 2

Adherence to treatment among CHH men. Patient-reported longest duration off treatment (n = 93). All men had been on treatment for at least 12 months. Only 26% (24/93) of men reported never having a gap in treatment (white bar). In total, 37% (34/93) had a lapse in treatment of more than1 year.

Figure 3

Patient-reported challenges of CHH. Patient-reported challenges represent targets for interventions. Focus group discussions revealed two dominant themes relating to feelings of isolation and shame (depicted by circles). These themes encompassed 4 consistent, inter-related psychosocial challenges related to CHH low self-esteem, body image concerns, feeling left behind by their lack of sexual development, and issues related to anxiety and depression (depicted by diamonds). The shapes are sized according to the frequency of patient comments and overlaps and connected shapes identify co-occurring themes.