Hoarding: Studies Characterize Phenotype, Demonstrate Treatment Efficacy

A 79-year-old woman recently died in a fire at her Washington, DC, row house when "pack rat conditions" prevented firefighters from reaching her in time.¹ A few days later, 47 firefighters from 4 cities spent 2 hours fighting a fire in a Southern California home before they were able to bring it under control. Floor-to-ceiling clutter had made it nearly impossible for them to enter the house.²

In its severe forms, compulsive hoarding can lead to fires, unsanitary conditions (eg, rat and roach infestations), broken bones from tripping on clutter, and other health and safety hazards, according to Sanjaya Saxena, MD, director of the Obsessive-Compulsive Disorders Program at the University of California, San Diego.

Much more needs to be known about this disorder, Saxena told Psychiatric Times. "We don't have great epidemiology," he said, "but our estimates are that from 1 to 2 million people in the United States have clinically significant compulsive hoarding symptoms that require treatment. . . . Unless clinicians know how to screen for [hoarding], they won't identify it."

Several recently published studies on the phenotype, genetics, and treatment of compulsive hoarding may assist clinicians in diagnosis and treatment. Michael Wheaton and colleagues³ studied 473 patients with obsessive-compulsive disorder (OCD), with the purpose of characterizing the hoarding phenotype. They used a strict definition of hoarding that combined hoarding items from the Yale-Brown Obsessive-Compulsive Scale-Symptom Checklist (Y-BOCS-SC) and a clinician-based rating of hoarding. The definition enabled them to distinguish individuals with serious hoarding problems from non-hoarders.

"In our phenotype study, about a quarter [24.3%] of individuals with OCD had hoarding symptomatology," said Wheaton, an intramural researcher in NIMH's Laboratory of Clinical Science. The research team found that persons with OCD and hoarding behaviors tended to be more impaired than their non-hoarding counterparts. Hoarders endorsed more total OCD symptoms, including ordering compulsions as well as contamination, sexual, religious, symmetry, and somatic obsessions. They suffered from a greater degree of global impairment than non-hoarders and had more comorbid psychiatric disorders, such as social phobia, substance abuse, and a trend toward bi-polar I disorder.

"Male hoarders compared to male non-hoarders had greater social phobia. But in comparing female hoarders with female non-hoarders, we found the hoarders experienced higher rates of bipolar I, substance abuse disorders, alcohol abuse disorders, panic disorder, social phobia, and binge-eating disorder," Wheaton told Psychiatric Times.

One intriguing finding Wheaton noted is that hoarders had significantly higher scores on the Beck Depression Inventory (BDI) without having higher rates of major depressive disorder or dysthymia. The lifetime prevalence rates of major depression and dysthymia were similar in hoarders and non-hoarders, he said. But it was the score on the BDI, a measure of current depressive symptomatology, that was elevated more in the hoarders.

"It's very speculative to think about, but . . . [this] may be more related to hoarding itself, in that the people who have hoarding are quite impaired by it and might, therefore, suffer from more depressive symptomatology," he said.

While hoarders often lack insight and don't view hoarding of possessions as a problem, they are still subject to outside pressures, he added. They sometimes get calls from public health organizations or their local fire department. Their landlords may give them a hard time, telling them they need to clean up the dwelling or risk being evicted. They may feel embarrassed to have people over or find it difficult to leave napkins and other items behind when they go out to eat at restaurants, Wheaton explained.

Another surprise revealed by the study was the "gender difference in the presentation of the hoarding phenotype," Wheaton said.

Females who have OCD and hoarding tend to be more affected than males, having a broader range of comorbidity, more severe OCD symptoms as measured on the Y-BOCS, greater global impairment on the Global Assessment of Function, and greater dysphoria as assessed on the BDI.

A primary reason for conducting the study, Wheaton said, was to better "refine the phenotype," so that we can classify people into meaningful and more homogeneous groups for genetic studies. NIMH investigators, he noted, are recruiting for a genetic study of OCD, which includes hoarders.

"People can participate from anywhere, because we can do an SCID [Structured Clinical Interview for DSM-IV-TR] over the telephone, and they can have blood drawn by their local physician and mailed to us," he said. Further information is available at www.clinicaltrials.gov, identifier NCT00001548.

Other recently published results from the OCD Collaborative Genetics Study by Samuels and colleagues⁴ found that those with hoarding symptoms were clinically different from non-hoardersand that in families with OCD, there was significant linkage to compulsive hoarding on chromosome 14.⁵

While the studies by the Wheaton and Samuels groups add to the understanding of hoarding, Saxena said that they are based on somewhat "skewed data." People in the studies, he said, were recruited on the basis of whether they had OCD and then they were divided into hoarding and non-hoarding subgroups. These studies did not include those who have compulsive hoarding but no other OCD symptoms, which accounts for up to half of all compulsive hoarders in the population.

Recent research on the hoarding phenotype also raises questions about the nosology of compulsive hoarding and OCD.⁶

"There is mounting evidence that compulsive hoarding should either be a distinct subtype of OCD or listed as a separate disorder that is related to OCD," Saxena declared.

Diagnostic tools
Among the indicators suggesting problem hoarding behavior, Saxena cited urges to save things; difficulties with discarding things (which he characterized as "disposaphobia"); extensive clutter in the home that poses a public health or safety hazard; and associated features, such as severe indecisiveness, procrastination, and disorganization.

Wheaton indicated that the gold standard for diagnosing hoarding currently is the Y-BOCS, but that in the future, it may be the Dimensional Yale-Brown Obsessive-Compulsive Scale (DY-BOCS).⁷

"Not only does [DY-BOCS] ask more specific questions about hoarding but it breaks down obsessive-compulsive severity by categories . . . you can have someone with very severe hoarding who might also have less severe checking symptoms," he said.

Another useful tool, particularly for treatment studies, he added, is the Saving Inventory-Revised, a 23-item self-report questionnaire designed to measure hoarding-related behaviors, including difficulty in discarding, acquisition, and clutter.⁸

Saxena and colleagues also have developed a clinician-administered rating scale, the UCLA Hoarding Severity Scale,⁹ that measures the severity of compulsive hoarding and its associated features.

Treatment
In recent months, the results of 2 treatment studies have been published, one involving pharmacotherapy and the other on cognitive-behavioral therapy (CBT).

Saxena and colleagues⁹ compared the response of 32 OCD patients with compulsive hoarding and 47 non-hoarding OCD patients to paroxetine (Paxil). To date, this is the only prospective trial of standardized pharmacotherapy in compulsive hoarders. Participants had to be free from psychotropic medication for 4 weeks before study entry and could not take other psychotropic medications during the study.

"The biggest finding and the one that was most surprising to some people is that paroxetine worked just as well for the compulsive hoarder as it did for the non-hoarding OCD patient," Saxena told Psychiatric Times. "The two groups had virtually identical improvements in OCD symptoms, anxiety symptoms, depression symptoms, and overall functioning. Furthermore, if you took the entire group, the severity of hoarding symptoms did not predict better or worse response to paroxetine. Both of these findings went against the conventional wisdom."

That conventional wisdom, formed on the basis of a few unreplicated studies, says that serotonin reuptake inhibitors do not work for compulsive hoarders and that hoarders do not respond well to treatment, he explained.

Currently, Saxena is lead investigator on another study looking at the neurobiology and treatment of compulsive hoarding. In that study, scheduled to continue for another 2 or 3 years, participants are undergoing positron emission tomography and MRI scans as well as neurocognitive testing both before and after treatment with venlafaxine (Effexor). This study, he predicted, will help investigators identify baseline abnormalities in brain structure and function, track how those abnormalities change with treatment, and possibly identify pretreatment predictors of response to treatment. For clinical treatment of patients with compulsive hoarding, Saxena advocates using both medications and CBT tailored to compulsive hoarding.^10,11

Tolin and coauthors¹² just published preliminary data on the efficacy of a new cognitive-behavioral treatment for compulsive hoarding. Patients received 26 sessions of CBT including frequent home visits over a 7-month period. At post-treatment evaluation, 5 of 10 treatment completers were rated as much or very much improved.

Optimistic about treatment, Saxena declared, "I have seen compulsivehoarders have major improvements with treatment. That is something even the clinical community doesn't quite understand. . . . These folks can get better, but you have to do treatment that is really focused on the core features."

References:

References1. Klein A. Chair catches fire, killing woman, 79. Washington Post. February 21, 2007. Available at: http://www.washingtonpost.com/wp-dyn/content/article/2007/02/20/AR2007022002105_pf.html. Accessed April 4, 2007.
2. Pennington A. $850,000 in damage in Costa Mesa fire. Daily Pilot. February 24, 2007. Available at: http://www.dailypilot.com/articles/2007/02/24/publicsafety/dpt-fire25.prt. Accessed April 4, 2007.
3. Wheaton M, Cromer K, LaSalle-Ricci VH, Murphy D. Characterizing the hoarding phenotype in individuals with OCD: associations with comorbidity, severity and gender. J Anxiety Disord. 2007;Feb 12; [Epub ahead of print].
4. Samuels JF, Bienvenu OJ 3rd, Pinto A, et al. Hoarding in obsessive-compulsive disorder: results from the OCD Collaborative Genetics Study. Behav Res Ther. 2007;45: 673-686.
5. Samuels J, Shugart YY, Grados MA, et al. Significant linkage to compulsive hoarding on chromosome 14 in families with obsessive-compulsive disorder: results from the OCD Collaborative Genetics Study. Am J Psychiatry. 2007;164:493-499.
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8. Frost RO, Steketee G, Grisham J. Measurement of compulsive hoarding: Saving Inventory-Revised. Behav Res Ther. 2004;42:1163-1182.
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12. Tolin DF, Frost RO, Steketee G.An open trial of cognitive-behavioral therapy for compulsive hoarding. Behav Res Ther. 2007 Jan 16; [Epub ahead of print]