13 research outputs found
Development, Feasibility, and Acceptability of the Electronic Patient Benefit Index for Psoriasis in Clinical Practice: Mixed Methods Study
BackgroundPatient-reported outcomes are relevant in clinical practice showing patient benefits, supporting clinicians’ decision-making, and contributing to the delivery of high standards of care. Digital monitoring of patient-reported outcomes is still rare. The Patient Benefit Index (PBI) measures benefits and goals from patients’ views and may be relevant for regular documentation and shared decision-making.
ObjectiveThis study aimed to develop electronic versions of the PBI to examine their feasibility and acceptability in clinical practice for patients with psoriasis.
MethodsWe developed an app and a web version of the existing, valid PBI using focus groups and cognitive debriefings with patients before conducting a quantitative survey on its feasibility and acceptability. Conduction took part in an outpatient dermatology care unit in Germany. Descriptive and subgroup analyses were conducted.
ResultsA total of 139 patients completed the electronic PBIs (ePBIs) and took part in the survey. The ePBI was understandable (n=129-137, 92.8%-98.6%) and feasible, for example, easy to read (n=135, 97.1%) and simple to handle (n=137, 98.5%). Acceptability was also high, for example, patients can imagine using and discussing the ePBI data in practice (n=91, 65.5%) and documenting it regularly (n=88, 63.3%). They believe it could support treatment decisions (n=118, 84.9%) and improve communication with their physician (n=112, 81.3%). They can imagine filling in electronic questionnaires regularly (n=118, 84.9%), even preferring electronic over paper versions (n=113, 81.2%). Older and less educated people show less feasibility, but the latter expected the relationship with their physician to improve and would be more willing to invest time or effort.
ConclusionsThe app and web version of the PBI are usable and acceptable for patients offering comprehensive documentation and patient participation in practice. An implementation strategy should consider patients’ needs, barriers, and facilitators but also physicians’ attitudes and requirements from the health care system
Unmet digital health service needs in dermatology patients
BACKGROUND
Digital health services are rapidly gaining acceptance in healthcare systems. Dermatology as an image-centric specialty is particularly well suited for telemedical services. However, dermatology patients' demands of electronic services remain largely unexplored.
METHODS
This study investigated patients' views in primary, secondary, and tertiary referral centers. In August 2017, 841 questionnaires were filled in by dermatology patients.
RESULTS
76.34% expressed interest in using digital healthcare services as part of medical consultations. 84.41% of all patients would complete their initial registration form electronically. Fewer patients were comfortable with sending pictures of skin changes to their doctors using email (40.89%) or mobile health applications (40.61%). Specific interest was indicated for arranging appointments online (90.80%) and electronically-placed prescriptions (76.56%), rather than online learning videos (42.03%), and actual online consultations (34.53%). 65.37% of patients would pay for online consultations themselves.
CONCLUSIONS
Taken together, interest in electronic health services is high in dermatology patients. Our data suggest that readily understandable electronic services such as online-arranged appointments and electronic prescriptions are of higher interest to patients than the current type of online consultations. Therefore, the full potential of teledermatology still remains to be tapped by newer, more attractive forms of services closely adapted to patients' demands
European Registry for Hidradenitis Suppurativa (ERHS): State of play
info:eu-repo/semantics/publishe
Gender differences in psoriasis: a Swiss online psoriasis survey
Physicians’ and patients’ perspectives can vary significantly. For a long time, physicians considered psoriasis a non-pruritic dermatosis until a survey found pruritus to be the most bothersome symptom among psoriasis patients. In our study, we wanted to get an insight into the factors that affect patients and evaluate whether gender differences exist. A link of an anonymous online survey (www.fightpsoriasis.ch) with 24 questions was placed on the website of the Swiss Psoriasis and Vitiligo Patient Association (www.spvg.ch) from May 2016 until June 2017. 3164 persons participated in this online survey, of which 1979 were diagnosed with psoriasis. Significantly more females than males were affected by psoriatic pruritus [713 (36%) vs. 500 (25.3%), p ≤ 0.001] and 756 (39.7%) of all patients identified pruritus as the most life quality-limiting factor. Fewer women reported high satisfaction with their therapy compared to men [96 (4.9%) vs. 110 (5.6%), p ≤ 0.015]. Pruritus remains the most bothersome symptom and women were more often affected by it, leading to a lower treatment satisfaction among female patients
Teledermatology: Just Cool or a Real Tool
Telemedicine is the practice of healthcare using interactive audio, visual and data communication. This includes healthcare delivery, diagnoses, consultation and treatment as well as education and transfer of medical data. The transmission of multimedia streams has remained a major challenge. Although the Internet remains basically insecure, technology allows today to define and implement complete security profiles for specific (medical) communities. Data security is a must as in all other areas of applied medicine. Teledermatology offers possibilities in consulting, continuous medical education or teleteaching. In the future, consulting and asking for a second opinion will be the gold standard of medical care. The quality of healthcare will be improved without saving direct costs. However, indirect costs such as time and effort for the patient and the citizen will be reduced
Establishment of a European Registry for hidradenitis suppurativa/acne inversa by using an open source software
SCOPUS: le.jFLWINinfo:eu-repo/semantics/publishe
Efficacy and Survival of Systemic Psoriasis Treatments: An Analysis of the Swiss Registry SDNTT.
BACKGROUND
The Swiss psoriasis registry SDNTT (Swiss Dermatology Network for Targeted Therapies) records the long-term safety and effectiveness of systemic treatment regimens for psoriasis.
PATIENTS AND METHODS
Patients with moderate to severe psoriasis are included in the SDNTT when treatment with a conventional systemic agent or biologic is initiated that was not previously used by the respective patient. Patients are followed over a 5-year period. Clinical data are obtained every 3-6 months using standardized case report forms. Here, baseline data and follow-up data for 1 year of patients included from October 2011 until December 2014 were analyzed.
RESULTS
Within 39 months, 323 patients from 7 tertiary dermatology centers in Switzerland were recruited in the SDNTT; 165 patients received biologics and 158 conventional systemic therapies. Patients treated with biologics had a significantly higher severity (PASI 11.3 vs. 9.2, BSA 15.6 vs.11.9, psoriatic arthritis 36.4 vs. 10.8%; p ≤ 0.005, p ≤ 0.013, p ≤ 0.001) and a longer duration of illness (19.2 vs. 14.4 years, p ≤ 0.003) compared to patients starting a conventional systemic treatment. PASI reduction was satisfying in both treatment groups, with 60.6% of patients treated with biologics achieving PASI75 after 1 year compared to 54.2% of patients receiving conventional systemic drugs (nonsignificant). On average, the drug survival in patients receiving a biologic therapy was significantly longer than those receiving conventional systemic treatments (30.5 vs. 19.2 months, p ≤ 0.001).
CONCLUSIONS
In the real-world setting of a prospective national therapy registry, the application of current therapeutic guidelines for patients with moderate to severe psoriasis resulted in a PASI reduction of approximately 70% within the first year of treatment, but current therapeutic targets of PASI75 and PASI90 were reached in only 58 and 36% of patients, respectively, at 1 year, highlighting a gap in efficacy between selective clinical trials and the real-world setting