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Help for Hoarding: Update on Current Treatments for Hoarding Disorder Carol A Mathews MD Department of Psychiatry University of California, San Francisco [email protected] hDp://pgenes.net
Help for Hoarding: Update on Current Treatments for
Hoarding Disorder
Carol A Mathews MD
Department of Psychiatry University of California, San Francisco
[email protected] hDp://pgenes.net
What is hoarding?
• To accumulate for preservaHon, future use in a hidden or carefully guarded place
• To gather or accumulate
• To keep to oneself
Dictionary.com Free Merriam Webster Dictionary
What is Hoarding Disorder?
3
Hoarding Disorder DSM-‐5
• Persistent difficulty discarding or parHng with personal possessions, even those of apparently useless or limited value, due to strong urges to save items, distress, and/or indecision associated with discarding
DSM-‐5
• The symptoms result in the accumulaHon of a large number of possessions that fill up and cluDer the acHve living areas of the home, workplace, or other personal surroundings (e.g., office, vehicle, yard) and prevent normal use of the space.
• If all living areas are uncluDered, it is only because of others’ efforts (e.g., family members, authoriHes) to keep these areas free of possessions.
DSM-‐5
• The symptoms cause clinically significant distress or impairment in social, occupaHonal, or other important areas of funcHoning (including maintaining a safe environment for self and others)
• The hoarding symptoms are not due to a general medical condiHon (e.g., brain injury, cerebrovascular disease)
Why do people hoard?
• Saving for a Hme of need
• Don’t want to lose something important
• SenHmental value
• Thrill of acquisiHon • Taking advantage of
bargains
• Need to “fix” items for future potenHal use
• Feeling “sorry” for items
• “Memory” aids
Frost et al 1998: Eckfield 2012
Natural history
• 4% of populaHon have significant hoarding symptoms
• 2% have HD • Affects men and women equally • Symptoms start around age 13
• Severity of symptoms increases with every decade of life
• 6.2% of adults >55 have HD
Hoarding symptoms (discarding) are progressive over Hme
9
0
0.5
1
1.5
2
2.5
3
3.5
4
<20 20-‐24 25-‐29 30-‐34 35-‐39 40-‐44 45-‐49 50-‐54 55-‐59 60-‐64 65-‐69 70-‐74 ≥75
Symptom
Severity Score
Age
Individual Hoarding Symptoms
CluDer
Discarding
CollecHng
Distress
Impact of HD
• Direct contributor to up to 24% of deaths by house fire • 8-‐12% of individuals with hoarding have experienced or
been threatened with evicHon • Up to 3% have had a child or elder removed from the
house due to safety concerns • 64% of elderly individuals with hoarding have difficulty
with self-‐care • In San Francisco alone, >$6 million per year is spent by
service agencies on hoarding-‐related issues
Common co-‐occuring disorders
• Obsessive-‐compulsive disorder (OCD) – 15-‐50%
• Major depression (MDD) – 50-‐60%
• Anxiety disorders – 25-‐35%
• Post traumaHc stress disorder (PTSD) – 25-‐30%
• Grooming disorders: TrichoHllomania, skin picking, nail biHng – 20-‐60%
Associated symptoms
• Indecisiveness • DisorganizaHon • PerfecHonism • Avoidance • ProcrasHnaHon • Difficulty with prioriHzaHon/valuaHon
• 34% have ADHD • 5% more meet symptom criteria • but had a later onset of symptoms
So how do you treat it?
General treatment approaches
• Address hoarding and cluDering simultaneously with other co-‐occurring problems, if any
• Maximize moHvaHon for change
• Set realisHc expectaHons • Enlist aid of outside agencies (such as family members, friends, support groups)
Treatment modaliHes • Harm reducHon approaches
– Working with families and care providers
• Pharmacotherapy (medicaHons)
• Psychotherapy • CombinaHon therapies
• Added intervenHons to target addiHonal factors
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Harm reducHon
• Minimize impact of hoarding
• Make house and appliances useable
• Minimize fall hazards
• Work in concert with individual
• Aim is not to cure but to manage
• Consider MHA-‐SF peer response team
Pharmacotherapy • SSRIs are the treatment of choice for OCD
– Prozac, Zolon, Celexa, Lexapro, Paxil, Luvox (Anafranil/clomipramine)
• Most studies done in those with OCD with hoarding symptoms
• Results have been mixed – Some suggest that HD doesn’t respond as well to SSRIs – Others suggest that it is poor insight or somaHc symptoms rather than hoarding that is related to poorer response
SSRIs for Hoarding
• 32 HD vs. 47 non-‐hoarding OCD subjects • ParoxeHne (Paxil)
– ~ 40 mg a day for about 2 1/2 months – Up to 60 mg a day
• HD responded as well as non-‐hoarding OCD – 50% had at least a parHal response – 28% had a good response (≥35% decrease in symptoms)
• 31% decline in symptoms overall • But only 16 of the 79 could tolerate the target dose of 60 mg per day
• Less than half could tolerate the 40 mg per day dose Saxena et al 2007
Venlafaxine (Effexor) XR
• 24 with HD (20 female); 23 completers • 12 weeks of treatment
– Mean dose 200 mg per day
• Mean of 32% decrease in symptom severity
• 16/23 (70%) had a response (>30% decrease in symptoms)
• Well tolerated
Saxena and Sumner 2014
SHmulants
• Based on observaHon of ADHD like symptoms seen in HD
• 4 adults (2 on SSRIs) up to 72 mg per day of extended release methylphenidate
• Mean dose of 50 mg per day • 3/4 improved in aDenHon at four weeks • 2 had improvement (28% and 32% in SI-‐R, almost all in acquisiHon)
• Side effects of palpitaHons and insomnia—none conHnued to take it aner 4 weeks
Rodriguez 2014
Other possible medicaHons
• No other published studies • Based on what we know of neuroanatomy/neurocogniHve funcHon
• Cholinesterase inhibitors – Donezepil, rivasHgmine,tacrine, galantamine
• Modafinil (Provigil) • Atypical anHpsychoHcs
– Work as adjuncts for OCD, used for those with poor insight
Pharmacotherapy for HD, summary
• Probably not as effecHve as these studies suggest in the real world
• Side effects may limit their usefulness • May be useful under certain circumstances • When therapy isn’t available, not wanted, etc • When there are other co-‐occurring problems or symptoms – OCD – Anxiety – Depression – ADenHon-‐deficit hyperacHvity disorder (ADHD)
Psychotherapy
• Most approaches use a cogniHve behavioral therapy (CBT) approach
• Differences • Mental health professional vs. peer with lived experience of hoarding
• Individual vs. group treatment
• AddiHonal components – Home visits, addressing disorganizaHon, cogniHve training, cluDer buddies, or other supports
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So what is CBT?
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Principles of CBT
• Time limited, structured • PsychoeducaHon
– Understanding of what hoarding disorder is and how it is treated
• Developing awareness of symptoms and paDerns
• IdenHfying triggers, fears
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CogniHve
• Focuses on idenHfying and changing mental distorHons
• CogniHve restructuring – Increasing moHvaHon – EmoHonal aDachment to saved items/paDerns of thought
– Planning • Anxiety reducHon • Goal sevng
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Behavioral
• Graded exposures, desensiHzaHon to fears • Anxiety reducHon • Exposure model
– Imagining discarding items – SorHng – PracHcing discarding items
– Reducing acquisiHon • Levng your brain learn that it is OK to discard
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Fear curve
28
100
0
Fear curve
29
100
0
TradiHonal approach to treatment has been CBT provided by mental health
professionals
30
Advantages and Disadvantages • Trained in CBT based approaches (someHmes) • Trained to assess for and idenHfy other co-‐occurring problems
• Can assess for/refer for/prescribe medicaHons
• Not available in many places
• Don’t have specialty in HD • Costs money (and in SF, don’t onen take insurance)
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Peer FacilitaHon as an AlternaHve
• A peer model of recovery that may feel more empowering and authenHc than clinician
• May offer more hope to see a peer succeed • Not as sHgmaHzing • Development of tools and methods by those with lived experience
• ConnecHng to a supporHve community
• Disadvantage—not trained in CBT or in clinical assessment
• Not trained in group dynamics
*John Franklin, personal communication
Savings Inventory-‐Revised
33 Frost et al 2004
Scores >42 are considered hoarding
Average scores for HD are 60-65
>14 point improvement is considered clinically meaningful
How effecHve is treatment?
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Individual CBT Group CBT
Self help
Group BiT
Cog Rehab Medications
0
5
10
15
20
25
How effecHve is treatment?
35
Individual CBT Group CBT
Self help
Group BiT
Cog Rehab Medications
0
10
20
30
40
50
60
But, there’s a problem….
These studies were all done in an academic sevng.
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How does it translate in the
real world?
Community-‐based treatment
• MHA-‐SF has been providing psychologist-‐led and peer-‐facilitated groups for a couple of years
• Provides an opportunity to examine how they compare to one another
• If they are both effecHve, maybe we can expand the range of available services
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Sample CharacterisHcs
• Treatment-‐seeking individuals given the opHon of CBT group or Peer-‐Led Group
• Not accepted into group if already been in either group < 1 year ago
• Self-‐idenHfied as having cluDering and/or hoarding problems
• Not recruited for a research study – Urban populaHon
– Mostly uninsured
Hypotheses
#1: Community-‐based hoarding intervenHons produce change in hoarding symptoms.
#2: Community-‐based hoarding intervenHons (i.e. CBT group and Peer-‐led Group) have similar effects on hoarding symptoms compared to published group outcomes, and would be comparable to one another as well.
Group Facilitators
CBT Group Clinicians
– Primary clinician is Psychologist
– Specialized training in CBT for hoarding
– Second clinician was doctoral level student in training
Peer-‐Led Group facilitators
– 3 out of 4 Peer Facilitators had lived experience and parHcipated in CBT or support groups at MHASF
– 1 Facilitator was non-‐clinician mental health advocate
– All employed by MHASF – All trained to facilitate groups by Lee Shuer (16-‐20 hours)
Demographics
CBT Group Peer-‐led Group
N=41; 47% women* N=20; 70% women*
45% white* 85% white*
60+ years old = 55%* 60+ years old = 45%*
None excluded None excluded
Pre-‐treatment Hoarding Severity Scale Scores (HSS)= 38.9/ 60
Pre-‐treatment Hoarding Severity Scale Scores (HSS)= 40.3/60
*=significantly different
Group Format
GCBT Peer-‐Led Group
8-‐10 members per group 10 members per group
16 sessions 15 sessions over 20 weeks
2 hours per session 2 hours per session
1 clinician for 4 groups 2 clinicians for 2 groups
2 peer facilitators
2 home visits (30 min each) No home visits
No weekly reminders Weekly reminders
Group CBT Manual by Muroff et al (2009) CBT Workbook by Frost and Steketee (2007)
“Buried In Treasures: Help for Compulsive Hoarding, Acquiring, and Saving” by Tolin, Frost and Steketee (2007) “Buried In Treasures” Peer Facilitator Manual by Shuer and Frost
0
5
10
15
20
25
30
35
40
45
Pre-‐treatment HSS Post-‐treatment HSS
Group CBT
Peer-‐Led Book Group
28.2%
ReducHons in Hoarding Symptoms Were Significant for CBT and Peer-‐Led Groups
*
*
Hoarding Severity Scale Change Score
*p < 0.01
17.6%
Our CBT Group Data vs. Published Outcomes (Savings Inventory-‐Revised)
0
2
4
6
8
10
12
14
16
18
20 26.5%
15.2%
22.0% 23.3%
29.9%
14.3%
Gilliam et al, 2011 Our Data
Muroff et al 2009 Muroff et al., 2012
SIR Change Score
Our Peer-‐Led Book Group Data are Comparable to Published Outcomes
0
5
10
15
20
25
30
Frost et al, 2012 Peer-‐Led Group (Savings Inventory-‐Revised)
Our Data: Peer-‐Led Group (Hoarding Severity Scale )
24.1% 28.2%
% Improvement
Conclusions and ImplicaHons
• CBT and Peer group both had meaningful reduc5ons in Hoarding Severity Scale. But… Improvements were modest.
• No significant difference in Hoarding Severity Scale scores between groups when gender, ethnicity, age, and educaHon were controlled for.
• The two groups provide complementary community-‐based opHons. SHll CBT principles, concepts, and strategies, but in different packaging ! Services are more accessible as a result.
• Results should be interpreted with cauHon due to lack of randomizaHon, no control group, and low sample size.
But there’s an even bigger problem……
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Very Few Seek Help
825,000 people in San Francisco
2-‐5% of populaHon esHmated to have hoarding challenges
(1,6000-‐41,250 people)
Rough esHmate is ≈150 people seek services at Mental Health AssociaHon of San Francisco per
year** *Frost & Steketee (2000) ** Mental Health AssociaHon of San Francisco, personal communicaHon
Others who come in contact with individuals who hoard…
Animal Control Officers Vector Control Officers Pest Control Operators
Property Managers and Owners
Building Contractors & Handymen
Public Housing Authorities
Firefighters Law Enforcement
Property Cleanup Specialists
Emergency Medical Technicians Hospital Social Workers Child and Adult Protective Services Home Health Aides Occupational Therapists
Attorneys
City Council members and Supervisors
Very Few Seek Help
825,000 people in San Francisco
2-‐5% of populaHon esHmated to have hoarding challenges
(1,6000-‐41,250 people)
Rough esHmate is ≈150 people seek services at Mental Health AssociaHon of San Francisco per
year
336 people a year referred to APS
Common Barriers to Accessing Help
STIGMA NO SERVICES NEARBY
CAN’T AFFORD IT
FEW PROVIDERS
OUR PROPOSED SOLUTION: COMMUNITY-‐BASED PARTNERSHIP TO DEVELOP A COMMUNITY-‐BASED INTERVENTION
A Partnership between the Mental Health AssociaHon of San Francisco
and UCSF Funded by the PaHent Centered
Outcomes Research InsHtute (PCORI)
Members of the Team
Mental Health Advocacy Group – (Mental Health Association of San Francisco)
Academic Research Institution
(University of California, San
Francisco)
Clinicians in the
Community
Individuals with Lived Experience
Benefits of Community-‐based Partnerships
Sharing resources and support can lead to more productivity
Focus on advocacy
can lead to larger impact
Alternative perspectives
enhance community-based
interventions
Access to scientific and
clinical expertise
References: Israel et al, 1998 Altman, 1995
Collaborators and Funding • Kevin Delucchi • Ofilio Vigil • Soo Uhm
• Chia-‐Ying Chou • Monika Eckfield
• ScoD Mackin
• Michael Gause
• Joanne Chan • Gillian Croen Howell • Mark Salazar • Julian Plumadore
• Sandra Stark • David Bains
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This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Award #6000. All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology
Committee.
Features of Our Community-‐based IntervenHon
• MulHple opHons for services: Clinician-‐based programs or peer-‐based programs
• Free to consumers, funded by City of San Francisco
• Trainings and annual conference to disseminate informaLon to community clinicians, non-‐specialists and/or non-‐professionals
• Sustainable (i.e. due to infrastructure) • Generalizable (i.e. low exclusion rate, adapted to needs of community)
Help for Hoarding study
– AcHvely recruiHng and treaHng individuals with HD (N=300) over the next 2 years
– Randomized to BiT or CBT – Inclusion criteria: meet DSM-‐5 criteria for HD – Free treatment, payment for compleHng assessments
– Very few exclusion criteria • No CBT or BiT for HD in the last year • No demenHa, able to parHcipate in a group sevng
How are we doing so far?
• 234 people screened (only 6% excluded) • 156 people assessed • 115 people randomized for treatment
• 31 people have completed treatment
• 54 people are receiving treatment
• 20 are waiHng to start treatment
• 11 dropped out of group treatment
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Who are our parHcipants?
• 68% are women; Average age is 58 • 63% are Caucasian, 11% Asian, 8% African American, 4% Hispanic, 13% mulHracial
• 33% are employed full or part Hme
• 23% are reHred, 11% are disabled • 49% have private insurance, 43% have MediCal/Medicare, 8% are under insured or not insured
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Who are our parHcipants?
• 31% have depression • 14% have bipolar disorder • 14% have generalized anxiety disorder • 8% have PTSD • 7% have OCD • 4% have a psychoHc disorder • 3% have substance abuse/dependence
• Mean SI-‐R score was 67.4 (range 43-‐86) 60
How do they hear about us? • 21% flyers • 12% internet (hoarders.org/clinicaltrials.gov)
• 12% MHA-‐SF • 11% medical professionals
• 10% friend, family • 7% other organizaHon (senior centers,etc)
• 3% radio or newspaper ad 61
CHR #13-12100
Overw
helmed by C
lutter? (415) 763 - 7489 pcorisfstudy@
gmail.com
Overw
helmed by C
lutter? (415) 763 - 7489 pcorisfstudy@
gmail.com
Overw
helmed by C
lutter? (415) 763 - 7489 pcorisfstudy@
gmail.com
Overw
helmed by C
lutter? (415) 763 - 7489 pcorisfstudy@
gmail.com
Overw
helmed by C
lutter? (415) 763 - 7489 pcorisfstudy@
gmail.com
Overw
helmed by C
lutter? (415) 763 - 7489 pcorisfstudy@
gmail.com
Overw
helmed by C
lutter? (415) 763 - 7489 pcorisfstudy@
gmail.com
OVERWHELMED BY CLUTTER?
Researchers at the University of California San Francisco and the Mental Health Association of San Francisco are conducting a study to learn more about different treatments for people with Hoarding Disorder. Participants of this study will be asked to commit to 16 group sessions, 2 hours in length, over the span of 20 weeks. Before and after receiving the 20-week treatment, participants will complete surveys, diagnostic interviews, and cognitive assessment at the Parnassus campus of UCSF. Payment for participation is $100.
ARE YOU ELIGIBLE TO PARTICIPATE IN THIS STUDY?
Sometimes clutter can make it difficult to do everyday activities or get in the way of your work and social life. You might have difficulties organizing and deciding what to throw away.
RECEIVE TREATMENT AND SUPPORT
You may be eligible to participate in this study if you are 18 years or older, you have difficulties with clutter, and you have not received cognitive-behavioral treatment for
Hoarding Disorder in the last 12 months. To learn more about this study, contact the MHASF at: [email protected] or
(415)763-7489. We look forward to hearing from you!
Outcomes so far • Can’t compare CBT vs. BiT Hll the end of the study
• So far, of the 24 who have completed the study, the average improvement is 19.8 points on the SI-‐R (range -‐5 to 53 points)
• 29% improvement (range -‐7.5% to 67%)
• 10 (40%) have >35% improvement
• 3 (12.5%) have had >50% improvement 62
How do we compare?
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Individual CBT
Group CBT
Self help
Group BiT
0
5
10
15
20
25
Summary • We have been very successful in recruiHng individuals to parHcipate in treatment
• About 29% improvement in symptoms so far
• Despite (or because of!) the community focus, our results are as good as, or beDer than, the previous studies
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Shameless pitch
• We are sHll recruiHng for parHcipants • New groups start every 4-‐6 weeks • Study goes unHl the end of 2016, and we need 300 parHcipants total
• Groups in San Francisco, Berkeley/East Bay and San Mateo
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Text
How do I participate or refer participants?
415-763-7489 pcorisfstudy@ gmail.com
Questions? [email protected] [email protected]
