Title |
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
|
---|---|
Published in |
Orphanet Journal of Rare Diseases, June 2014
|
DOI | 10.1186/1750-1172-9-83 |
Pubmed ID | |
Authors |
Andrew A Dwyer, Richard Quinton, Diane Morin, Nelly Pitteloud |
Abstract |
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. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
United States | 1 | 100% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 1 | 100% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Spain | 1 | <1% |
United States | 1 | <1% |
India | 1 | <1% |
Switzerland | 1 | <1% |
Unknown | 132 | 97% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 21 | 15% |
Researcher | 15 | 11% |
Student > Postgraduate | 11 | 8% |
Student > Ph. D. Student | 11 | 8% |
Student > Doctoral Student | 10 | 7% |
Other | 30 | 22% |
Unknown | 38 | 28% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 28 | 21% |
Nursing and Health Professions | 12 | 9% |
Psychology | 12 | 9% |
Business, Management and Accounting | 8 | 6% |
Social Sciences | 7 | 5% |
Other | 23 | 17% |
Unknown | 46 | 34% |