Book Reviews

LEGAL RIGHTS OF THE MENTALLY HANDICAPPED. Edited by Bruce J. Ennis and Paul R. Friedman, with assistance by Bonnie Gitlin. New York: Practising Law Institute-Mental Health Law Project, 1973. Pp. 1533 in three volumes. 20.00. THE LAW OF ADVERTISING. By George Eric Rosden and Peter Eric Rosden. New York: Matthew Bender & Co., 1974. Loose Leaf, in two volumes. 100.00

Qualitative Comparison of Barriers to Antiretroviral Medication Adherence Among Perinatally and Behaviorally HIV-Infected Youth

Medication adherence among youth living with HIV (28%-69%) is often insufficient for viral suppression. The psychosocial context of adherence barriers is complex. We sought to qualitatively understand adherence barriers among behaviorally infected and perinatally infected youth and develop an intervention specific to their needs. We conducted in-depth interviews with 30 youth living with HIV (aged 14-24 years) and analyzed transcripts using the constant comparative method. Barriers were influenced by clinical and psychosocial factors. Perinatally infected youth barriers included reactance, complicated regimens, HIV fatigue, and difficulty transitioning to autonomous care. Behaviorally infected youth barriers included HIV-related shame and difficulty initiating medication. Both groups reported low risk perception, medication as a reminder of HIV, and nondisclosure, but described different contexts to these common barriers. Common and unique barriers emerged for behaviorally infected and perinatally infected youth reflecting varying HIV experiences and psychosocial contexts. We developed a customizable intervention addressing identified barriers and their psychosocial antecedents

Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project

Background: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. Objective: To evaluate unmet needs from the perspective of HS patients. Methods: Prospective multinational survey of patients between October 2017 and July 2018. Results: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. Limitations: Data were self-reported. Patients with more severe disease may have been selected. Conclusion: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address

Evaluating Patients\u27 Unmet Needs in Hidradenitis Suppurativa: results from the Global VOICE project

BACKGROUND: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. OBJECTIVE: To evaluate unmet needs from the perspective of HS patients. METHODS: Prospective multinational survey of patients between October, 2017 and July, 2018. RESULTS: Majority (63.7%, n=827) visited a physician ≥5 times prior to receiving formal HS diagnosis. Mean delay in diagnosis was 10.2 years (+/- 8.9 years). Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4%, n=798) rated recent HS-related pain as moderate or higher, while 4.5% described recent pain to be worst possible. Access to dermatology was rated as difficult by 37.0% (n=481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n=563), and 14.5% were disabled due to disease. Patients reported high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.5%, respectively. LIMITATIONS: Data was self-reported. Patients with more severe disease may have been selected. CONCLUSIONS: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address