SEATTLE — With a spectrum of cognitive and mental health symptoms known to affect people with multiple sclerosis (MS), new research suggests hoarding and cluttering may be among them.

Though preliminary, the study showed rates among those with MS to be more than twice that of the general population.

"Given the wider impact of hoarding and cluttering behavior on health and psychosocial well-being that has been demonstrated in the general population, the results of this study highlight the importance of identifying and characterizing hoarding and cluttering behavior in MS patients with the goal of developing effective therapeutic interventions," say the authors of the research, presented here at the Consortium of Multiple Sclerosis Centers (CMSC) 2019 Annual Meeting.

The study involved 198 patients with MS at the NYU MS Center in New York, who were assessed with the established scales of Activities of Daily Living for Hoarding (ADLH), Saving Inventory – Revised (SI-R), and Hoarding Rating Scale (HRS), which assesses patients as "non-hoarders" (HRS <14) or "hoarders" (HRS 14 or above).

Patients' disability scores were also assessed with the Patient-Determined Disability Steps (PDDS) scale. The patients had a mean age of 43.9, a disease duration of 13.3 years; 70% were female and 48% were non-white. The mean PDDS was 1.6.

Results showed that 9.7% of patients met the criteria for clinically significant hoarding on the SI-R and 13.6% had an HRS score of 14 or higher, compared with an estimated rate of 2% to 5% for hoarding in the general population.

Compared with the subjects with MS who did not meet the hoarding criteria, those who did had significantly higher scores on the ADL-H, indicating more functional impairment in activities of daily living (P < .0001), and significantly higher levels of unemployment that cannot be explained by the level of disability (P < .01).

The prevalence of hoarding was significantly higher among Caucasians and African Americans (14%-15%) compared with Hispanics (2%; P = .02).

Senior author Joshua Bacon, PhD, a professor of psychology at Yeshiva University and a research associate professor at NYU Langone Multiple Sclerosis Comprehensive Care Center in New York City, said the findings are consistent with the observations that prompted the study.

"From my own experience working with MS patients and in talking with the physicians at the clinic, it appeared that a sizable number of the patients were hoarder/clutterers," he told Medscape Medical News.

Bacon noted that the findings could shed light on a problem that may not only be underreported in MS patients, but may also represent a symptom that could be successfully controlled, compared with the more challenging aspects of the disease.

"A central emphasis in [psycho]therapy is to turn the focus away from the functional consequences of MS, and its potential progression over which the patient may have no control, to those functional capabilities that can be developed and strengthened," Bacon said.

"For individuals with MS who are hoarders/clutterers, and even more so, for those whose problem is cluttering but not at the level of a hoarding disorder, we would want to give them the tools to take control of an area of their life that they in fact have the capability of doing so."

Distinctions of Hoarding vs Cluttering Needed

Bacon noted that the DSM-5 psychiatric diagnosis for hoarding includes clutter that results from the emotional distress of parting with possessions; he pointed out, however, that a cluttered home environment does not necessarily imply a hoarding disorder.

He suggested a goal of future research should be to determine if hoarding behavior can be stratified to better distinguish between a hoarding disorder and cluttering, he added.

"This distinction would have important implications for developing differentially appropriate interventions," Bacon said.

Bacon noted that he is working to develop a clinician user-friendly screen that would be sensitive to hoarding disorder vs cluttering without hoarding.

"I believe that this distinction may be helpful not only to our MS population, for example, with respect to how we can best develop targeted treatment interventions, but also to other similar patients with disabilities [yet to be investigated] and even to the population at large," Bacon said.

Speculating on the potential underlying causes of hoarding and cluttering in MS, Bacon suggested that common comorbidities such as obsessive-compulsive disorder (OCD) or clinical depression may be an important determinant for many patients.

However, other MS symptoms could also play causative roles.

"The higher incidence may be related to cognitive impairments," Bacon said, giving examples of "organization skills; categorizing; decision making; fatigue, which is one of the most common symptoms reported among MS people; becoming more easily overwhelmed; and on a more psychodynamic level, a compensation for loss of control, [such as] loss of function replaced by 'hold on to what you have.' "

"At least with respect to the latter possibility, paradoxically, learning to declutter can become an empowering experience that can enhance the sense of control," Bacon continued, "and I think that this will also be true whether or not the clutter is driven by a compensation."

In a 2014 study published in the International Journal of MS Care, J. Tamar Kalina, a former colleague of Bacon's at NYU Langone MS Care Center, reported on a clutter reduction protocol for patients with MS, with a focus on the psychosocial issues that prevented organization, practical strategies for clutter removal, and management to improve performance in activities of daily living.

While that study was also preliminary, the participants in the 6-week program said they "had fewer falls, felt less isolated, had an increased ease in finding their medications, and a general sense of cognitive clarity in accomplishing activities of daily living."

Bacon noted that the research appears to represent the only published study addressing the topic of hoarding/cluttering in individuals with MS.

While his focus is currently on evaluating the extent and nature of the problem, Bacon said he hopes to "put it on the radar for MS clinics, and characterize the nature of the problem particularly as it relates to a more nuanced stratification of clutter behavior."

"Obvious Clinical Utility" – And Notable Limitations

In commenting on the study, Scott B. Patten, MD, professor at the Cumming School of Medicine and research director at the Department of Psychiatry, University of Calgary, Canada, agreed that, while evidence on the topic is lacking, hoarding and cluttering do not seem uncommon in MS.

"As a clinician, I would say that one does see hoarding and cluttering issues quite frequently, but this is merely an anecdotal observation," he told Medscape Medical News.

"The results are interesting for descriptive purposes — they show a substantial burden of these symptoms in a sizable subset of a clinical population," Patten said. "This kind of information has obvious clinical utility."

He noted, however, that various limitations prevent the ability to draw conclusions from the findings.

"I think it is going too far to claim that an elevated prevalence relative to the general population has been shown," Patten said. "This is not a random sample from the population but rather a help-seeking case series."

"Hoarding is more common in older people, and it would be important, for example, to adjust or standardize for age, and perhaps other variables, to confirm that there is a specific association between MS and hoarding.

"Also, the investigators use a cut-point based interpretation to assess prevalence from scale ratings," he continued. "A more detailed assessment will be important in studies following up on these results."

MS patients have a higher prevalence of depressive disorders, often comorbid with obsessive-compulsive disorder, as well as related disorders, and most studies have also shown higher levels of anxiety in general, but Patten noted that literature is limited for specific disorders.

Nevertheless, he agreed that the findings suggest a possible benefit in keeping hoarding and cluttering in mind in the treatment of MS patients.

"As a clinician, I would take this as evidence that one should be attentive to these symptoms and that there should be a clinical capacity to further assess and/or refer," he said.

Bacon has disclosed no relevant financial relationships.

Consortium of Multiple Sclerosis Centers (CMSC) 2019 Annual Meeting: Abstract PSF01. Presented May 30, 2019.

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