SAN FRANCISCO – Patients with hoarding disorder are notoriously difficult to engage in treatment. They are embarrassed by their behavior and reluctant to seek help. And Carolyn I. Rodriguez, MD, PhD, has a good idea why: Her first-of-its-kind survey of individuals with hoarding disorder showed they find the currently available array of treatments and services by and large unacceptable.

The online survey included 203 individuals with clinically significant hoarding symptoms as defined by a Saving Inventory–Revised score of at least 40. The survey contained written and audio thumbnail descriptions of 11 current treatments and services, some evidence based, others not. Participants were asked to rate the acceptability of each of the 11 interventions on a 0-10 scale, with 0 being not at all acceptable.

The results? “Nobody wanted anything!” Dr. Rodriguez said at the annual conference of the Anxiety and Depression Association of America.

Acceptability of a given intervention was defined a priori as an average score of 6 or more on the Likert Scale. She had hoped to see some 7s and 8s, strong endorsements that might have helped guide her efforts to develop attractive and engaging new therapies for this common disorder. But in fact, only 3 of the 11 items squeaked by the acceptability threshold with tepid endorsements hovering around 6: individual cognitive-behavioral therapy (CBT), with an average rating of 6.2; use of a professional organizing service, at 6.1; and use of a self-help book, at 6.0.

The least acceptable of the 11 options, not surprisingly, was a court-appointed guardian, with an average score of less than 1. Next most unpopular was use of a cleaning and removal service, followed by pharmacotherapy with a serotonin reuptake inhibitor, drug therapy with a stimulant, and group CBT.

Rounding out the list of 11 treatments and services were an online support group, a facilitated support group based upon the model described in the book “Buried in Treasures” (Oxford University Press, 2013), by David F. Tolin, PhD; Randy O. Frost, PhD; and Gail Steketee, PhD; and involvement of a case manager.

Participants were asked to describe what they liked and disliked about the 11 options. What they liked about the three that were acceptable – albeit barely – was the prospect of personalized care, being held accountable, and their belief that those three strategies really work. What they disliked about the least acceptable interventions was the feeling that they would have no control over the process, anticipation that these treatments and services would cause them distress, and skepticism about their efficacy.

Actually, while the evidence regarding pharmacotherapy is limited to a few open-label, uncontrolled, prospective case series involving hoarding disorder patients not concurrently in psychotherapy, the medication data look quite promising, according to Dr. Rodriguez, who is affiliated with the department of psychiatry and behavioral sciences at Stanford (Calif.) University.

Investigators at the University of California, San Diego, treated 24 patients meeting DSM-5 criteria for hoarding disorder with extended-release venlafaxine (Effexor XR) for 12 weeks. Twenty-three of the 24 completed the study, achieving a mean 32% reduction in Saving Inventory–Revised scores and a 36% reduction in UCLA Hoarding Severity Scale scores (Int Clin Psychopharmacol. 2014 Sep;29[5]:266-73).

Sixteen of the 23 completers were categorized as treatment responders. The investigators noted that this 70% efficacy rate for venlafaxine extended-release was markedly better than published CBT success rates, which hover around 28% for individual CBT and range from 10% to 30% for group CBT.

Also, Dr. Rodriguez has published her experience in prescribing extended-release methylphenidate for four patients with hoarding disorder without comorbid attention-deficit/hyperactivity disorder, all of whom previously had failed to respond to at least one serotonin reuptake inhibitor. The therapeutic rationale for stimulant therapy was that patients with hoarding disorder have problems with attention and decision making that may contribute to accumulation of clutter.

In this 4-week study, patients were started on methylphenidate extended-release at 18 mg/day, with the dosing increased by 18 mg/day each week to a maximum of 72 mg/day. Three of the four patients achieved at least a 50% reduction in measures of inattention, and two patients showed decreases in hoarding symptoms of 25% and 32% on the Saving Inventory–Revised. But at the end of 4 weeks, all four patients opted not to continue on the medication because they didn’t like the side effects, mainly insomnia and palpitations (J Clin Psychopharmacol. 2013 Jun;33[3]:444-7).

Pharmacotherapy has a couple of other potentially appealing features: It works much faster than does psychotherapy, and it also is effective therapy for some of the other psychiatric conditions commonly comorbid with hoarding disorder.

Several audience members observed that even though survey participants did not rate group CBT or facilitated support groups as acceptable treatments, in their own experience as therapists, they’ve found these interventions to be among the most successful. Dr. Rodriguez agreed. Based in part upon her survey findings, her new research initiatives emphasize offering choice, since there’s clearly no one-size-fits-all intervention. She’s also stressing accountability, incorporation of tools aimed at reducing shame and stigma, and providing more information about evidence-based therapies to strengthen patients’ beliefs that treatment actually works.

Toward that end, she recently has trained individuals from the community in how to run a 3-month, skills-based, group therapy program using the Buried in Treasures approach with group in-home visits and decluttering sessions. These group therapy modules will be evaluated formally as to acceptability and efficacy.

Hoarding disorder has a prevalence of 2%-6%. It’s a condition that poses significant public health risks, including fire hazard and pest infestation. Hoarding disorder typically starts in childhood or the teen years and follows a chronic, progressive course. Affected individuals do not initiate treatment until age 50, on average. The condition is more common in men than women. They are often single, highly educated, and live alone. Insight is often poor. A family history of hoarding is common. Psychiatric comorbidity also is common, with depression topping the list.

Dr. Rodriguez’s survey was funded by the National Institute of Mental Health and foundation grants. She reported serving as a consultant to Allergan, Rugen Therapeutics, and BlackThorn Therapeutics.

bjancin@frontlinemedcom.com

Hoarding disorder patients deem few treatments as acceptable