Development of a hidradenitis suppurativa patient decision aid.

BACKGROUND: Patient decision aids (PDAs) are tools that facilitate informed shared decision-making between patients and health care providers. To address a previously identified need in treatment decision-making in hidradenitis suppurativa (HS), we developed an HS-PDA. METHODS: Development of the HS-PDA was based on International Patient Decision Aids Standards. Evidence was derived from the North American Clinical Management Guidelines for HS. RESULTS: Content from guidelines was transformed into patient-friendly language and reviewed by three physicians and two patient representatives. Feedback on HS-PDA content, presentation and practicality was obtained from 7 HS patients and 5 physicians. Revisions were made following thematic analysis. All patients felt the content on treatment options contained the right amount of information and 5 found it helpful to see these options contextualized to their values. Each stated they would use the HS-PDA during treatment decision-making. Three and four physicians respectively indicated the content was accurate and language was patient-friendly. LIMITATIONS: Small sample sizes may limit generalizability. CONCLUSION: This HS-PDA was developed in accordance with international standards based on current HS guidelines with input from patients and physicians. It is available online without cost.

Proceeding report of the Symposium on Hidradenitis Suppurativa Advances (SHSA).

Hidradenitis Suppurativa (HS) is a chronic debilitating skin condition that impairs the productivity and the quality of patients` lives. HS has recently drawn lots of attention among scholars to further expand their knowledge but it still loads with uncertainties and gaps to be explored. This publication addresses these uncertainties, and provides a road-map for researchers, scholars and clinicians from different disciplines for their future studies about HS. This is a proceeding report of the first Symposium on Hidradenitis Suppurativa Advances (SHSA), and it reviews the scientific sessions about the epidemiology, pathophysiology, presentations, and management of HS. This symposium was a great opportunity for experts in the HS field to exchange their knowledge, and improve their mutual understanding of this disease.

Preliminary Validation of the HS-QoL: A Quality-of-Life Measure for Hidradenitis Suppurativa.

BACKGROUND: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease with adverse physical and psychosocial impacts. The development of an HS quality-of-life measure, HS-QoL, has been recently described. OBJECTIVE: This study was designed to validate the HS-QoL. METHOD: Fifty-five patients with HS from 4 dermatology clinics completed the 30-minute online survey. Item reduction, reliability (internal consistency), and correlation analysis (to assess convergent validity) were conducted. RESULTS: The HS-QoL was reduced from 53 items to 44 items, resulting in a 7-subscale questionnaire. All subscales demonstrated excellent internal consistency, except for the support subscale, which had adequate internal consistency. All 7 HS-QoL subscales were related to other measures of QoL, life satisfaction, and mental health, which demonstrates convergent validity. CONCLUSION: The 44-item HS-QoL demonstrated strong preliminary evidence of reliability (internal consistency) and convergent validity.

Hidradenitis Suppurativa, Intimate Partner Violence, and Sexual Assault.

BACKGROUND: Sexual assault and intimate partner violence have never been examined in individuals with hidradenitis suppurativa. The research is important, because prior studies show higher incidences of intimate partner violence and sexual assault in individuals with disabilities, and hidradenitis suppurativa meets criteria for a disability. OBJECTIVES: The objective of the study is to examine whether individuals with hidradenitis suppurativa are at significantly higher risk of intimate partner violence and sexual assault compared with individuals who have acne, a recognised disability. METHODS: Participants who met criteria for hidradenitis suppurativa and acne were recruited from a mid-sized university and a dermatology clinic. Participants spoke English and were over the age of sexual consent. Group (hidradenitis suppurativa and acne) differences on intimate partner violence and sexual assault were analysed. Victimisation within the past 12 months was measured using the Checklist for Controlling Behaviours, a measure of intimate partner violence, as well as the Sexual Experiences Survey-Short Form Victim, a measure of sexual assault. RESULTS: In total, 243 participants (n = 128 for hidradenitis suppurativa; n = 115 for acne) were surveyed. Individuals with hidradenitis suppurativa were significantly more likely to report being victimised by intimate partner violence. CONCLUSIONS: Intimate partner violence was more frequently observed in individuals with hidradenitis suppurativa. Health care providers should be aware of this issue when interacting with patients with hidradenitis suppurativa.

Development of a Quality-of-Life Measure for Hidradenitis Suppurativa.

BACKGROUND: Hidradenitis suppurativa (HS) is a chronic skin disorder with adverse impacts on both physical and psychosocial well-being. There is presently no validated HS-specific quality-of-life (QoL) measure. OBJECTIVE: The objective of this study is to develop a QoL instrument for HS (HS-QoL) in accordance with recommended standards. METHODS: Patient interviews (concept elicitation) and expert input were used to develop the conceptual framework for outcomes perceived important to patients with HS. A HS-QoL-v1 measure was developed, and cognitive interviews with patients were conducted for pilot testing. RESULTS: Concept elicitation interviews with patients with HS (n = 21) generated 12 themes. Most frequently reported were impacts on daily activities and symptoms due to HS. These themes, along with literature review and input from clinical experts, informed development of the HS-QoL-v1. Nine cognitive interviews were conducted in a pilot test and resulted in the HS-QoL-v2 measure. CONCLUSION: The HS-QoL-v2 is a preliminary QoL instrument for which further psychometric validation and establishment of clinimetric properties will be undertaken.

Impact of a hidradenitis suppurativa patient decision aid on treatment decision making: A randomized controlled trial.

BACKGROUND: Patient decision aids are tools that facilitate shared decision making when clinical evidence and patient values and preferences inform the process. Evidence-based guidelines have been developed for clinicians in hidradenitis suppurativa management. To address treatment decision-making needs of hidradenitis suppurativa patients, we developed a hidradenitis suppurativa patient decision aid. OBJECTIVE: To assess the efficacy of the hidradenitis suppurativa patient decision aid during treatment decision making. METHODS: An online, participant-blinded, parallel-group, randomized controlled trial of the hidradenitis suppurativa patient decision aid versus Mayo Clinic hidradenitis suppurativa website content (Mayo) was conducted with hidradenitis suppurativa patients. Outcomes were knowledge, decisional conflict, and preparation for decision making. RESULTS: Forty participants fulfilled inclusion criteria and were randomized to hidradenitis suppurativa patient decision aid or Mayo. In the hidradenitis suppurativa patient decision aid group, data from 16 and 15 participants were analyzed at phases 1 and 2, respectively. In the Mayo group, data from 15 and 13 participants were analyzed at phases 1 and 2, respectively. Increased knowledge (P < .01) and preparation for decision making (P < .01), as well as reduced decisional conflict (P < .01), were observed in the hidradenitis suppurativa patient decision aid compared with the Mayo group. LIMITATIONS: The online methodology and recruitment from online hidradenitis suppurativa support groups limits generalizability of findings. CONCLUSION: A hidradenitis suppurativa patient decision aid increased knowledge and preparation for decision making and reduced decisional conflict.

The influence of shyness on the use of Facebook in an undergraduate sample.

Researchers have suggested that individual differences will help to determine which online communication tools appeal to and are used by different individuals. With respect to the domain of computer-mediated communication, shyness is a particular personality trait of interest, as forums provide opportunities for social interactions that shy individuals might otherwise avoid. The present study investigated the personality trait of shyness and its relation with certain features of an online communication tool (Facebook). We hypothesized that shyness would be significantly related to the quantity of time spent on Facebook, the number of contacts added to one's Facebook profile, and attitudes toward Facebook. Our findings supported that shyness was significantly positively correlated with the time spent on Facebook and having favorable attitudes toward the social networking site. Furthermore, shyness was significantly negatively correlated with the number of Facebook "Friends.'' Limitations of the present study and suggestions for future research are addressed.