Andrew A. Dwyer|Richard Quinton|Diane Morin|Nelly Pitteloud
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
University Hospital of Lausanne|University of Lausanne|Royal Victoria Infirmary|Newcastle University|University of Lausanne|University Hospital of Lausanne|University of Lausanne
patients rare diseases congenital hypogonadotropic hypogonadism chh dispersed often challenged find specialized care face health disparities internet potential reach wide audience rare disease patients help connect patients specialists therefore study aimed determine webbased platforms could effectively used conduct online needs assessment dispersed chh patients ii identify unmet health informational needs chh patients iii assess patient acceptability regarding patientcentered webbased interventions bridge shortfalls carea sequential mixedmethods design used first online survey conducted evaluate health promoting behavior identify unmet health informational needs chh men subsequently patient focus groups held explore specific patientidentified targets care examine acceptability possible online interventions descriptive statistics thematic qualitative analyses used105 male participants completed online survey mean age 37 11 range 1966 years representing spectrum patients across broad socioeconomic range one subject adequate healthcare literacy survey revealed periods nonadherence treatment 3493 37 gaps healthcare 3687 41 exceeding one year patient focus groups identified lasting psychological effects related feelings isolation shame bodyimage concerns survey respondents active internet users nearly sought chh information online 101105 96 rated internet healthcare providers online community equally important chh information sources focus group participants overwhelmingly positive regarding online interventionssupport links reach expert healthcare providers peertopeer supportthe webbased needs assessment effective way reach dispersed chh patients individuals often long gaps care struggle psychosocial sequelae chh highly motivated internet users seeking information tapping online communities receptive novel webbased interventions addressing unmet needs