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Caregiver burden, family accommodation, health, and well-being in relatives of individuals with hoarding disorder
Journal of Affective Disorders 159 (2014) 7–14
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Journal of Affective Disorders journal homepage: www.elsevier.com/locate/jad
Research report
Caregiver burden, family accommodation, health, and well-being in relatives of individuals with hoarding disorder Helena Drury a,n, Sana Ajmi a, Lorena Fernández de la Cruz a, Ashley E. Nordsletten a,b, David Mataix-Cols a,b a b
King's College London, Institute of Psychiatry, London, UK Karolinska Institutet, Stockholm, Sweden
art ic l e i nf o
a b s t r a c t
Article history: Received 11 November 2013 Received in revised form 30 January 2014 Accepted 31 January 2014 Available online 12 February 2014
Background: Hoarding Disorder (HD), a new diagnostic entity in DSM-5, is associated with substantial functional impairment and family frustration but data from well-characterized samples is lacking. Method: Participants were 37 individuals meeting DSM-5 criteria for HD, 55 relatives of individuals meeting criteria for HD, and comparison groups of 51 self-identified collectors and 25 relatives of collectors. All participants completed a clinician-administered diagnostic interview for HD and an online battery of standardized measures of health, well-being, and impairment. Results: Substantial functional impairment was found for both HD individuals and their relatives. HD relatives reported significantly greater carer burden and accommodation of hoarding behaviors than relatives of collectors. Perceived level of squalor, co-habiting with, and increasing age of the HD individual were significant predictors of carer burden and functional impairment in the relatives. Limitations: The use of self-identified HD individuals may have produced a bias towards participants with relatively good insight. Subjective biases in self-reported symptoms cannot be ruled out, although the use of informant-report data provided some independent validation. Conclusions: HD is associated with substantial functional impairment for both sufferers and their relatives. The level of carer burden experienced by HD relatives was comparable to or greater than that reported in the literature by relatives of individuals with dementia. The findings indicate that relatives of individuals with HD may benefit from increased support and suggest that it may be beneficial to involve family members in the treatment of HD. & 2014 Elsevier B.V. All rights reserved.
Keywords: Hoarding disorder Clutter Cost of illness Family health Activities of daily living
1. Introduction Hoarding Disorder (HD) is a psychiatric disorder characterized by persistent difficulties discarding possessions, leading to the accumulation of clutter that substantially restricts the use of active living areas, and associated clinically significant distress or functional impairment; these symptoms are not attributable to other medical or psychiatric conditions (American Psychiatric Association, 2013). Individuals who experience hoarding difficulties are known to be impaired in several areas of everyday functioning such as cooking, washing up, paying bills, and performing well at work (Frost et al., 2013; Kim et al., 2001). As a result of their particular challenges in maintaining a clean home, individuals with hoarding
n Correspondence to: Southwark Psychological Therapies Service (NE Cluster), The Munro Centre, 66 Snowfields, London SE1 3SS, UK. E-mail address: [email protected] (H. Drury).
http://dx.doi.org/10.1016/j.jad.2014.01.023 0165-0327 & 2014 Elsevier B.V. All rights reserved.
difficulties have also been found to be at increased risk for chronic medical conditions and higher rates of health care utilization compared to non-hoarding individuals (Tolin et al., 2008). A study of individuals with Obsessive-Compulsive Disorder (OCD) treated in an intensive multimodal program found that those with hoarding symptoms and OCD reported lower quality of life than nonhoarding OCD individuals, particularly on domains assessing safety and living arrangements (Saxena et al., 2011). In addition to the impact experienced directly by those who hoard, research has suggested that those caring for, or living with, a hoarding individual also experience repercussions of hoarding (see e.g., Tolin et al., 2008). Frost et al. (2000) for example, highlighted that hoarding can lead to violations of local health, housing and sanitation laws, which have the potential to impact on family, carers, neighbors, and the wider community. Lower rates of marriage and higher rates of divorce have also been reported for those who hoard in both postal surveys of selfidentified individuals with hoarding (Steketee et al., 2003) and individuals meeting diagnostic criteria for HD who were visited at
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H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
home (Nordsletten et al., 2013a), suggesting problems in domestic relationships. In an internet-based survey, Tolin et al. (2008) found higher rates of frustration among the family members of those who hoard compared to the families of those seeking OCD treatment. Furthermore, in that study, the relatives' perceptions of poorer insight, increased hoarding severity, and clutter in their childhood environment were associated with increased frustration. However, the question of whether an individual's hoarding severity and insight are related to different types of family impacts – for instance, health repercussions versus impact on daily functioning – has not yet been explored. In a qualitative investigation in which partners and carers of individuals with hoarding were interviewed in their family homes, Wilbram et al. (2008) identified a range of ways in which carers support individuals with hoarding in completing basic activities that would otherwise be neglected such as self-care and managing finances. This work also described significant accommodation of hoarding behaviors by carers, who would not only avoid disturbing clutter in order to reduce the hoarding individual's distress, but also sometimes physically accomodated clutter in their own homes when there is insufficient space in the hoarder's residence (Wilbram et al., 2008). Taken together, this preliminary literature clearly suggests that hoarding may adversely impact both the sufferers and those around them, though much of the evidence is based on postal or web-based surveys of self-identified individuals or relatives of individuals with hoarding difficulties. As HD has only recently been recognized as a disorder in its own right, few of the abovementioned studies used DSM-5 diagnostic criteria to select participants. This is critical as some of the reported impacts may in fact be due to other medical or psychiatric conditions that are known to result in the pathological accumulation of objects, rather than HD itself. The present study aimed to further elucidate the nature and extent of impairment associated with strictly diagnosed HD, both for sufferers themselves and their relatives, as compared with a control group of healthy collectors and their relatives. Prior work has highlighted the similarities between hoarding and collecting behavior, with participants in both activities showing an interest in the accumulation of possessions and a strong emotional attachment to these items (e.g., Nordsletten and Mataix-Cols, 2012; Nordsletten et al., 2013a). As such, collectors permit us to examine whether the features under investigation (e.g., family burden) are specific to HD, or whether they are a product, more generally, of environments that place an emphasis on the acquisition of, or affection for, objects. In particular, the present study aimed to quantify and directly compare the level of functional impairment, health and well-being for individuals with HD compared to HD relatives and the nonclinical comparison groups using standardized measures. Family accommodation was also identified as an area of interest since this has not been systematically examined in previous research. It was predicted that individuals with HD and HD relatives would report greater functional impairment and poorer health and well-being compared to collectors and their relatives. It was also predicted that HD relatives would report greater carer burden, accommodation, and impact compared to relatives of collectors.
2. Methods 2.1. Participants and procedures Individuals with hoarding difficulties were recruited primarily from London-based support groups. Collectors were recruited primarily via online advertisements on relevant forums and
popular social networks. Additional participants were recruited through existing contacts with hoarding and collecting individuals, some of whom had engaged previously with our research at the Institute of Psychiatry. The sample included 37 individuals meeting DSM-5 criteria for HD, 55 relatives of individuals meeting criteria for HD (according to the informant-report), 51 selfidentified collectors, and 25 relatives of self-identified collectors. In the HD group, 19 participants (51%) had a relative who also participated in the study as part of the HD relatives group (one HD participant had two relatives who participated) and 18 (49%) took part in the study without a relative. In the collector group, 24 participants (47%) had a relative who also participated in the study as a relative of a collector and 27 (53%) took part in the study without a relative. The remainder of the two relative groups consisted of a further 35 (64%) HD relatives and 1 (4%) relative of a collector who took part in the study without an index hoarding/collecting relative. The final sample were part of a larger number of individuals (HD group N ¼41, HD relatives N ¼ 60, collector group N ¼55, relatives of collectors N ¼ 26) who were interviewed, some of whom were excluded from the final analyses because they did not meet our inclusion criteria. For the HD group and HD relatives, the main inclusion criterion was that the index individual with hoarding met diagnostic criteria for HD. For the collecting group and relatives of collectors, the main inclusion criterion was that the index collecting individual had at least one collection of items of a similar type or theme, and the main exclusion criterion was the index collecting individual meeting criteria for HD. Five selfidentified individuals with hoarding were excluded due to clutter below the clinical cut-off (Criterion C) and two because hoarding was found to be due to OCD concerns (Criterion F). Three participants who self-identified as collectors in fact met diagnostic criteria for HD and were therefore included in the HD sample. One participant self-identified as a collector but when interviewed reported that he did not currently have a specific collection. Two relatives of individuals with hoarding were excluded because their relatives with hoarding did not meet Criterion C, and three because their relatives with hoarding did not meet Criterion F (2 had hoarding linked to OCD concerns and one described clutter due to Attention Deficit Hyperactive Disorder). One relative of a collector was excluded because their relative did not have a clearly defined collection. After a brief screening to gauge potential suitability for the study, participants were interviewed over the telephone and administered the Structured Interview for Hoarding Disorder (SIHD; Nordsletten et al., 2013b), a semi-structured interview that assists in the diagnosis of HD according to DSM-5 diagnostic criteria (American Psychiatric Association, 2013). The HD and collector groups reported on their own hoarding/collecting behaviors while the relatives were asked to report on the behavior of the individual with hoarding/collecting. Participants also completed a series of online questionnaires (see Section 2.2) accessed through a website set up for the study. Following completion of the diagnostic interviews and questionnaires, the presence of HD was determined through the best estimate diagnosis procedure, as described by Leckman et al. (1982). In the present study, a group of four HD researchers met regularly and reviewed all available information for each participant, including transcripts of the phone interviews and ratings on the various hoarding severity measures. For hoarding/collecting participants whose relatives also took part in the study, informantratings as well as self-ratings were reviewed in the consensus meetings. Participants were provided with a small gift voucher (d5) as a token of appreciation for their participation. The study was reviewed and approved by the King's College Research Ethics Committee and all participants gave informed consent in accordance with this.
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
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range (Table 3). Higher scores on these measures indicate greater burden and accommodation.
2.2. Measures 2.2.1. Self-report measures completed by HD and collector groups Individuals meeting criteria for HD and healthy collectors completed three measures assessing hoarding symptoms: a measure relating to the diagnostic criteria for HD, the Hoarding Rating Scale – Self Report (HRS-SR; Tolin et al., 2008), a measure of hoarding-related beliefs, the Saving Cognitions Inventory (SCI; Steketee et al., 2003), and a visual measure of the severity of clutter, the Clutter Image Rating (CIR; Frost et al., 2008). The HRSSR was selected as a measure of hoarding severity since it is widely used, is very brief, has excellent psychometric properties, has both self- and informant report versions (e.g., Tolin et al., 2008, 2010), and to permit direct comparison with the findings of Tolin et al. (2008), who also examined family burden in hoarding. Level of squalor was assessed using the Home Environment Index revised (HEI; Rasmussen et al., in press). In the current study, internal consistencies for the HRS-SR, SCI, CIR, and HEI were in the good to excellent range in all study groups (Table 1). The HD and collector groups also completed the Short Form Health Survey (SF-36; Ware and Sherbourne, 1992), a measure of health and well-being, and the Work and Social Adjustment Scale (WSAS; Mundt et al., 2002), a measure of impairment in areas of everyday functioning such as work, home management, and personal relationships. In the current study, the internal consistency of the SF-36 and WSAS was excellent in all study groups (Table 2). For each of these measures, higher scores indicate greater hoarding severity/impairment, with the exception of the SF-36, where higher scores indicate greater health and well-being.
2.2.3. Informant-report measures completed by HD relatives and relatives of collectors HD relatives and relatives of collectors completed informantreport versions of the HRS-SR, the CIR, and the HEI. They also rated the extent to which their hoarding/collecting relative had insight into any difficulties caused by the hoarding/collecting, using an adaptation of item 11 from the Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) (Goodman et al., 1989), full details of which are described by Tolin et al. (2010). 2.3. Statistical analyses Data were analyzed using SPSS version 20. Categorical data were compared using chi-square tests. Continuous, independent data were compared using One-way Analysis of Variance (ANOVA) for comparisons involving all four groups or Student's t tests for comparisons involving two groups. Mann–Whitney U tests or Analysis of Variance (ANOVA), with gender and age as a covariate, were used when appropriate. Multiple regression was employed to examine potential predictors of impact on HD relatives; variables were entered into the models using the stepwise approach. All tests were two-tailed at p¼ .05.
3. Results 3.1. Demographics HD (mean age¼54.08) and collector (mean age¼52.39) groups did not differ significantly in age, although those in the HD group were significantly older than both HD relatives (mean age¼ 40.33) and relatives of collectors (mean age¼45.44). The proportion of male participants was significantly higher (p o.001) in the collector group (66.7%) compared to the HD group (15.8%); there was no significant difference (p 4.1) between the proportion of male and female participants in the HD relatives group (21.8% males) compared to the relatives of collectors group (24.0% males). HD relatives and relatives of collectors were also asked to state their relationship with their hoarding/collecting relative. The majority of HD relatives were children of individuals with
2.2.2. Self-report measures completed by HD relatives and relatives of collectors HD relatives and relatives of collectors completed self-report versions of the HRS-SR, the SCI, the SF-36, and the WSAS. In addition, they also completed the Caregiver Burden Inventory (CBI; Novak and Guest, 1989) and the Family Impact Scale for Hoarding Disorder (FISH; Nordsletten et al., 2014), a scale developed to assess both the level of family accommodation to the hoarding behaviors displayed by the relative who hoards and the associated burden on families. In the current study, the internal consistency of the CBI and the FISH was in the good to excellent Table 1 Mean scores and significant differences for self-reported hoarding characteristics. Individuals with HD (n ¼37) Mean
(SD) a
HRS (range 0–40) 25.92 SCI Emotional attachment 42.38a (range 10–70) Control (range 3–21) 16.35a Responsibility (range 6–42) 25.22a Memory (range 5–35) 21.03a Total (range 24–168) 104.97a CIR (range 1–9) Bedroom Kitchen Living room HEI (range 0–45)
4.54 3.51 4.49 13.46
(5.97)
Collectors (n¼ 51)
α .79
Mean 6.20
b
b
(13.66)
22.51
(4.02) (7.47) (6.18) (25.71)
.93
10.27b 13.90b 9.37b 56.06b
(1.80) (1.50) (1.61) (6.39)
– – – .88
1.50 1.54 1.54 4.92
(SD) (4.98)
α
HD relatives (n¼55) Mean
.84 7.00
b
(SD) (6.72)
c
Relatives of collectors (n¼ 25)
α
Mean
.84 5.80
b
(SD)
.65
(10.14)
51.24
o .001nnn
.48
22.64 36.01 47.28 59.22 t
o .001nnn o .001nnn o .001nnn o .001nnn p
.29 .40 .46 .52 Cohen's d
9.88 7.50 10.26 7.45
o .001nnn o .001nnn o .001nnn o .001nnn
2.27 1.70 2.33 1.68
(6.43)
16.44
(4.48) (6.78) (3.86) (22.46) .92
9.69b 11.67b 9.65b 46.94b
(4.05) (6.24) (5.73) (18.92) .92
8.72b 10.72b 8.48b 44.36b
(5.32) (6.96) (5.42) (25.06)
.96
– – – –
– – – –
– – – –
– – – –
– – – –
– – – –
Note: Means with different superscripts differ significantly after Tukey's-B post hoc correction. CIR ¼ Clutter Image Rating, HEI¼ Home Environment Index, HRS¼ Hoarding Rating Scale, and SCI ¼Saving Cognitions Inventory. nnn
p o .001.
Partial eta squared
o .001
15.93
– – – .72
p
101.03
.85
(12.15)
(.58) (.65) (.79) (3.27)
F
nnn
(6.36) b,c
α
Statistics Significance Effect size
10
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
Table 2 Mean scores and standard deviations for self-reported health and well-being and functional impairment. Individuals with HD (n ¼37) Mean WSAS (subscale range 0–8) Work 4.35a Home 5.16a Social leisure 4.64a Private leisure 3.97a Relationships 4.11a WSAS total (range 0–40) 17.89a SF-36 (range 0–100) Physical functioning 66.35a Role physical 39.86a Role emotional 35.14a Energy 31.22a Emotional health 46.70a Social functioning 48.31a Pain 59.80a General health 41.49a SF-36 total 48.75a
(SD)
(2.28) (1.57) (2.15) (2.30) (2.12) (6.92) (26.66) (43.88) (35.09) (22.00) (21.25) (29.19) (30.16) (22.45) (20.88)
Collectors (n¼51)
α
.85
Mean
.47b 1.02b .49b .84b .65b 3.00b b
.95
88.43 82.84b 85.62b 61.47b 74.35b 88.73b 80.25b 66.27b 78.08b
HD relatives (n¼ 55) Relatives of collectors (n ¼25)
(SD)
α
(.90) (1.22) (1.10) (1.69) (1.11) (4.15)
3.35a 4.02a 3.62a 3.04a 3.96a .85 14.64a
(18.21) (31.02) (28.48) (18.23) (14.80) (15.66) (19.59) (15.81) (11.21) .88
Mean
(SD)
(2.57) (2.63) (2.70) (2.70) (2.65) (8.60)
b
86.55 67.73b 46.67a 45.36c 56.15a 65.45c 71.27a.b 60.27b 65.62c
α
.86
(21.28) (33.79) (42.36) (23.23) (21.32) (30.52) (25.00) (23.06) (20.42) .96
Mean
.64b 1.32b .68b 1.40b .44b 3.84b b
90.80 77.00b 70.67b 55.40b,c 70.24b 78.50b,c 71.50a,b 68.00b 74.83b,c
(SD)
(.99) (1.82) (1.60) (2.08) (.87) (5.66) (13.36) (33.79) (41.19) (20.66) (16.82) (25.14) (30.88) (24.15) (15.93)
Statistic Significance Effect size
α
F
p
Partial eta squared
.89
40.99 44.37 42.36 17.20 43.51 51.53
o .001nnn o .001nnn o .001nnn o .001nnn o .001nnn o .001nnn
.43 .45 .44 .24 .44 .49
.93
6.13 6.82 16.94 15.90 18.68 19.24 4.52 12.04 21.86
.001nnn o .001nnn o .001nnn o .001nnn o .001nnn o .001nnn .005nn o .001nnn o .001nnn
.10 .11 .24 .23 .26 .26 .08 .18 .29
Note: Means with different superscripts differ significantly after Tukey's-B post hoc correction. SF-36 ¼ Short Form Health Survey and WSAS ¼ Work and Social Adjustment Scale. nnn nn
p o.001. p o.01.
Table 3 Mean scores and standard deviations for carer burden, impact, and accommodation. HD relatives (n ¼55) Mean
(SD)
CBI Time dependence (range 0–20) Developmental burden (range 0–20) Physical burden (range 0–16) Social burden (range 0–20) Emotional burden (range 0–20) CBI total score (range 0–96)
6.56 10.82 5.13 6.89 12.40 41.80
(5.32) (5.71) (4.23) (5.09) (5.41) (21.78)
FISH Accommodation (range 0–18) Impact (range 0–27) FISH total (range 0–45)
8.05 13.05 21.11
(3.70) (6.38) (7.79)
Relatives of collectors (n¼ 25)
α
Mean
(SD)
.96
1.92 2.60 2.48 1.60 3.28 11.88
(3.11) (3.52) (3.38) (2.06) (3.97) (12.00)
.78
3.72 2.24 5.96
(3.94) (3.03) (6.00)
Statistic
Significance
Effect size
t
p
Cohen's d
.91
4.90 7.88 2.75 6.61 8.46 7.90
o .001nnn o .001nnn .007nn o .001nnn o .001nnn o .001nnn
1.06 1.73 .69 1.36 1.92 1.70
.83
4.76 10.27 8.62
o .001nnn o .001nnn o .001nnn
1.13 2.16 2.18
α
Note: CBI ¼Caregiver Burden Inventory and FISH ¼Family Impact Scale for Hoarding. nnn nn
p o.001. p o.01.
hoarding (80.0%), whereas the majority of relatives of collectors were spouses (60.0%). Relatives of collectors were significantly more likely (p o.001) to cohabit with the relative with collecting/ hoarding than HD relatives (76.0% vs. 21.8%, respectively). The inclusion of age, gender, and relationship to the hoarding/ collecting individual as covariates in subsequent analyses indicated that these factors did not impact the relationships of interest, except for three sub-scales of the SF-36 – physical functioning, role limitations due to physical functioning and pain – with age emerging as a significant covariate for these three scales, while gender was significant only for physical functioning. Results for these subscales are therefore reported after controlling for the covariates (see Section 3.3 below). 3.2. Hoarding characteristics Members of the HD group reported significantly higher hoarding symptoms (HRS-SR) and saving cognitions (SCI) than
the other three groups. Collectors scored significantly higher on the emotional attachment to possessions subscale of the SCI compared to HD relatives; there were no other significant differences between any of the other groups (Table 1). The HD group also reported significantly higher levels of clutter (CIR) and a higher level of squalor in their own houses (HEI) compared to the collector group. There was a significant difference between groups in the number of participants falling into the different insight categories (Z¼5.46, p o.001). The most frequently endorsed category among the collectors was the ‘not applicable’ category (n ¼12), since collecting did not cause any problems for them, followed by the categories ‘excellent’ (n¼ 4), ‘good’ (n¼ 4), ‘absent’ (n ¼3), and ‘fair’ (n ¼2). On the other hand, HD relatives were more likely to endorse the categories ‘fair’ (n¼ 15), ‘poor’ (n ¼15), and ‘absent’ (n ¼12) insight, compared to the categories ‘good’ (n¼ 10) and ‘excellent’ (n ¼3), indicating poor informant-rated insight in the HD group.
p o.001. po .05. n
nnn
.29 4.99 o.001 3.86 o.001nnn .47 4.60 o.001nnn .09 CBI .56 WSAS .46 FISH .54
nnn
p
Note: CBI¼ Carer Burden Inventory, FISH¼ Family Impact Scale for Hoarding, HEI ¼ Home Environment Index, HRS¼ Hoarding Rating Scale, SF-36 ¼Short Form Health Survey, SIHD ¼Structured Interview for Hoarding Disorder, WSAS ¼ Work and Social Adjustment Scale, and YBOCS ¼ Yale-Brown Obsessive-Compulsive Scale.
.035n .312 .104 2.17 1.02 1.65 .24 .12 .19 .995 .529 .243 .01 .64 1.18 .77 .444 .01 .67 .508 .09 1.33 .190 .14 .11 .10 .20 .970 .372 .442 .04 .90 .78 .01 .11 .10 .725 .171 .623 .35 1.39 .50 1.96 .056 .04 2.55 .014n .18 1.98 .053 .06 2.65 .011 .22 3.79 o .001nnn .32 .77 .448 .23
p t t Beta Beta t p t Beta p t Beta
n
Beta t Beta t
Age of hoarder Live with hoarder HEI
Predictors
This study was designed to assess the different ways in which HD may impact both individuals who hoard and their relatives. As expected, the HD group reported a higher level of hoarding symptoms than all other groups. Both those with HD and HD relatives reported equally high levels of functional impairment on the WSAS compared to the collectors and their relatives. Similarly, individuals with HD reported lower health and well-being than collectors and relatives of collectors across all of the subscales of the SF-36. HD relatives reported lower emotional well-being than relatives of collectors and reported an equivalent impairment in functioning to those with HD on three of the eight subscales of the SF-36: role limitations due to emotional problems, emotional wellbeing, and pain. In addition, HD relatives reported higher levels of carer burden, accommodation of hoarding behaviors, and impact of hoarding behaviors compared to relatives of collectors. Overall, our findings are consistent with previous studies, which have reported higher levels of functional impairment for individuals with HD as compared to collectors (Mataix-Cols et al., 2013; Nordsletten et al., 2013a), or relative to a healthy comparison group (Pertusa et al., 2008). The findings of the present study extended previous research by quantifying the level of functional impairment previously reported for relatives of individuals with hoarding (e.g. Frost and Gross, 1993; Tolin et al., 2008), establishing that this impairment is present for relatives of those meeting criteria for a diagnosis of HD, and highlighting that the impairment experienced by relatives is in fact equivalent to the level of functional impairment reported by those meeting criteria for HD.
Table 4 Results of regression of possible predictors of the impact of hoarding. SF-36
4. Discussion
p
Insight (using adapted YBOCS item)
Clinician-rated insight (from SIHD)
Multiple linear regression was used to analyze potential predictors of the impact of hoarding on HD relatives for each of the different impact measures. As can be seen in Table 4, squalor (HEI) was a significant predictor for scores on the CBI, WSAS, and the FISH and living with the individual with HD was a signficant predictor for the CBI and WSAS. The age of the individual with HD was a significant predictor for the WSAS, and the gender of the individual with HD was a significant predictor for the CBI with increased impairment reported for relatives of females with HD; none of these predictors reached significance for the FISH. No significant predictors were found for total scores on the SF-36.
p
3.4. Predictors of hoarding impact on relatives
Beta t
HRS
p
Relationship with hoarder
p
Individuals with HD and HD relatives reported significantly greater impairment than collectors and relatives of collectors across all of the functional domains measured by the WSAS. There were no significant differences between individuals with HD and HD relatives for any of the domains, nor between collectors and relatives of collectors (Table 2). Similarly, on the SF-36 individuals with HD reported poorer health and well-being compared to collectors and relatives of collectors. HD relatives scored significantly lower than relatives of collectors on two subscales: emotional well-being and role limitations due to emotional problems. There were no significant differences between individuals with HD and HD relatives on three of the eight subscales (role limitations due to emotional problems, emotional well-being, and pain). For carer burden, HD relatives reported significantly higher levels of burden than relatives of collectors for each of the five scales on the CBI. For the FISH, examination of the mean scores revealed that HD relatives reported significantly higher levels of accommodation and impact of the hoarding behaviors compared to relatives of collectors (Table 3).
Beta
Gender of hoarder Overall model fit (R2)
3.3. Impact
11
.43 .36 .29
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
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Similarly, our findings of lower health and well-being for individuals with HD and HD relatives are in agreement with previous research which has suggested increased rates of illhealth in hoarding (e.g., Frost et al., 2000; Tolin et al., 2008). Our findings on this point suggest a differential impact on individuals with HD compared to HD relatives, with those meeting criteria for HD reporting lower health and well-being across a range of physical and social-emotional domains, whereas impairment for HD relatives was restricted to social and emotional functioning. It should be noted that the level of impairment reported by HD relatives on these social-emotional domains was, by and large, equivalent to the levels reported by those meeting criteria for HD. These findings could indicate that HD relatives may be at increased risk for developing mood and anxiety disorders as a result of the stress associated with caring for someone who hoards. On the CBI, HD relatives reported higher levels of burden than relatives of collectors across a range of domains, including physical, social, and emotional burden. Mean scores for HD relatives exceeded the mean scores reported by Novak and Guest (1989) for relatives of those with Alzheimer's disease or other organic brain syndromes on three of the five subscales: developmental burden (10.65 vs. 7.08, respectively), social burden (6.92 vs. 2.54, respectively), and emotional burden (12.47 vs. 2.02, respectively). Scores for time dependence (6.43 vs. 6.98, respectively) and physical burden (5.20 vs. 5.47, respectively) were approximately equivalent. These findings are consistent with a previous qualitative analysis, which identified loss of normal family life, marginalization, and negative impact on relationships as key themes in the experience of relatives of individuals with hoarding (Wilbram et al., 2008). Similarly, Tolin et al. (2008) found higher levels of family frustration in relatives of individuals with hoarding compared to family members of those seeking treatment for OCD, indicating that family burden may be particularly high in hoarding. To date, no work has examined family burden in OCD using the CBI, although OCD has been found to have a comparable family burden to psychosis (Jayakumar et al., 2002) on the Burden Assessment Schedule (BAS; Thara et al., 1998) and a greater family burden than depression (Vikas et al., 2011) on the Family Burden Interview Schedule (FBIS; Pai and Kapur, 1981). Family accommodation of hoarding has not previously been examined systematically, although qualitative reports have signaled its presence (e.g., Wilbram et al., 2008). High levels of family accommodation have also been reported in psychiatric disorders such as OCD (e.g., Calvocoressi et al., 1995) and eating disorders (e.g., Whitney and Eisler, 2005) and are known to predict poorer treatment response (e.g., Storch et al., 2008). In this study, HD relatives reported higher rates of accommodation and burden than relatives of collectors on a new measure of family impact in HD, the FISH (Nordsletten et al., 2014). Previous research has linked increased family frustration with poorer insight and increased hoarding severity (Tolin et al., 2008). We assessed both hoarding severity and insight using the same methodology as Tolin et al. (2008) and also included clinicianratings of insight using the Structured Interview for Hoarding Disorder (Nordsletten et al., 2013b). However, none of these factors emerged as a significant predictor in our sample for any of the impact measures. Levels of hoarding severity in the present study were similar to those reported by Tolin et al. (2008), indicating that differences in presentation are unlikely to account for the differences in findings; level of insight was not reported by Tolin et al. (2008). Different measures of burden may vary in their relationship to features of hoarding; for example, family members may experience greater frustration when they feel that their
relative with hoarding has poor insight compared to a relative who cares for an individual with hoarding with equivalent severity but better insight. Similarly, the HRS-SR provides a general measure of hoarding symptoms (combining clutter, acquisition, and difficulties discarding) and measures such as the HEI that focus on specific features of hoarding may relate more closely to some measures of burden (e.g., relatives of an individual with HD who lives in a more squalid environment may spend more time cleaning the hoarded house). Research examining measures of family frustration as well as burden would help to assess these issues. In the present study, perceived squalor and cohabiting with an individual with HD were significant predictors of multiple measures of impairment, suggesting that these may be particularly important factors in determining the impact of hoarding on relatives. Age of the individual with HD was also a significant predictor, with greater age of the individuals with HD linked to higher impact on HD relatives. Interestingly, relationship with the individual with HD was not a significant predictor of any of the impact measures. Relationship with the individual with HD may overlap somewhat with other demographic variables such as age of the individual with HD and cohabitation. However, the use of stepwise regression in the present study identified only age and cohabitation as significant predictors and not relationship to the individual with HD. The present study was not designed to test whether different relationships with an individual with HD are associated with different types or levels of burden, and the majority of HD relatives (80%) were children of individuals with HD. However, previous research has also found no effect of type of relationship on family frustration experienced by relatives of individuals with hoarding (Tolin et al., 2008). Further research should investigate whether the relationship between impact and the age of individuals with HD is a function of accumulation of stress over time, or linked to increased physical and mental health needs associated with older age.
4.1. Clinical implications The findings of the present study have a number of potential implications for interventions targeting individuals with HD and their family members. Firstly, in terms of assessment, the findings of the present study suggest that the CBI, SF-36, WSAS, and FISH are sufficiently sensitive to detect the impact of hoarding on both individuals with HD themselves and their relatives. In terms of identifying those with a greater need for treatment, the predictors of impact on family members (squalor, living with the individual with HD, and age of the individual with HD) could be used to identify HD relatives who may particularly benefit from intervention. Previous research has found that HD relatives would like to receive education and support to help them understand the hoarding, how best to support their relative, and how to cope with the impact of hoarding on their own lives (e.g., Sampson, 2013; Wilbram et al., 2008). In other conditions which have substantial impact on family members, such as psychosis, family interventions have been found to reduce the rates of relapse while improving social functioning and treatment adherence among persons with psychosis (Berglund et al., 2003; Bird et al., 2010; Cuijpers, 1999; Kuipers et al., 2010). In addition, family interventions have been found to be cost effective, to positively impact carer burden, and to promote readiness to continue providing care (NICE, 2009). The above lines of research suggest that family interventions for HD may prove to be a valuable area for further research, particularly given that some individuals with HD may not self-identify as individuals with hoarding due to poor insight (see e.g., Frost et al., 2010).
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
4.2. Strengths and limitations One major strength of this study compared to previous literature is that all participants were screened using the DSM-5 diagnostic criteria for HD. Most of the previous research examining hoarding has either recruited participants on the basis of a diagnosis of OCD, or did not carry out full screening for the diagnostic criteria of HD (e.g., Tolin et al., 2008). The present study also used self-identified collectors as a control group, since collecting shares several features with hoarding (see Nordsletten et al., 2013a) but is generally not considered to be problematic. The use of this sample allowed further identification of features that distinguish normal relationships with objects from pathological hoarding. Previous research has also generally not used standardized measures of impact either to quantify the level of functional impairment characterizing individuals who hoard, or to compare these impairments to the impacts experienced by their relatives. The present study also had several limitations. Firstly, the use of self-identified individuals with HD and collectors may have produced a bias towards participants with relatively good insight into their condition. Secondly, several of the groups differed in age, gender distribution, and relationship to the individual with HD/ collector. Nonetheless, previous studies have found that participants with hoarding are more likely to be female and collectors more likely to be male (e.g., Nordsletten et al., 2013a). Similarly, previous studies recruiting relatives of individuals with hoarding symptoms (e.g., Tolin et al., 2008, 2010) observed that relative samples consist mainly of adult children of individuals with hoarding rather than spouses, perhaps because of the lower rates of marriage and higher rates of divorce associated with hoarding (e.g., Steketee et al., 2003). These differences in demographics are therefore likely to represent underlying differences in the populations sampled, and more exact matching of the groups may have meant that participants were less representative of the typical hoarding and collecting populations. Another limitation of the present study is the reliance on selfreport data and telephone interviews of participants (rather than conducting interviews in the home). In the context of hoarding, previous research has highlighted the value of independent observations of clutter (e.g., DiMauro et al., 2013) and the utility of photographs as an aid to diagnosis (Fernández de la Cruz et al., 2013). The use of informant-report data provided some independent validation of hoarding symptoms although family members may potentially have some biases in their reporting (see e.g., DiMauro et al., 2013). Further research would benefit from observation or indirect tests of the measures of interest. Finally, it may be helpful for further research to include measures of family frustration (as used by Tolin et al., 2008) to permit direct comparison across studies, although the use of the FISH in the present study was intended to offer a hoarding-specific assessment of family impact.
5. Conclusions HD is associated with substantial functional impact for individuals with HD and HD relatives. Family accommodation of hoarding behaviors appears to be an important area to be incorporated into treatment protocols, and family members may also benefit from education and support to help them understand how best to support their relatives and how to cope with the impact of hoarding on their own lives. Role of funding source The study was funded by King's College London as part of Dr. Drury's training as a clinical psychologist.
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Conflict of interest All authors declare that they have no conflicts of interest.
Acknowledgments The authors wish to thank all the participants who took part in the study. Their time and enthusiasm for the project is greatly appreciated.
References American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders. (5th ed.) Washington, DC: American Psychiatric Association. Berglund, N., Vahlne, J.O., Edman, A., 2003. Family intervention in schizophrenia: impact on family burden and attitude. Soc. Psychiatry Psychiatr. Epidemiol. 38, 116–121. Bird, V., Premkumar, P., Kendall, T., Whittington, C., Mitchell, J., Kuipers, E., 2010. Early intervention services, cognitive-behavioural therapy and family intervention in early psychosis: systematic review. Br. J. Psychiatry 197, 350–356. Calvocoressi, L., Lewis, B., Harris, M., Trufan, S.J., Goodman, W.K., McDougle, C.J., Price, L.H., 1995. Family accommodation in obsessive-compulsive disorder. Am. J. Psychiatry 152, 441–443. Cuijpers, P., 1999. The effects of family interventions on relatives' burden: a metaanalysis. J. Ment. Health 8, 275–285. DiMauro, J., Tolin, D.F., Frost, R.O., Steketee, G., 2013. Do people with hoarding disorder under-report their symptoms? J. Obsessive-Compuls. Relat. Disord. 1, 130–136. Fernández de la Cruz, L., Nordsletten, A., Billotti, D., Mataix-Cols, D., 2013. Photograph-aided assessment of clutter in hoarding disorder: is a picture worth a thousand words? Depress. Anxiety 39, 61–66. Frost, R.O., Gross, R.C., 1993. The hoarding of possessions. Behaviour Research and Therapy 31, 367–381. Frost, R.O., Hristova, V., Steketee, G., Tolin, D.F., 2013. Activities of daily living scale in hoarding disorder. J. Obsessive-Compuls. Relat. Disord. 2, 85–90. Frost, R.O., Steketee, G., Tolin, D.F., Renaud, S., 2008. Development and validation of the clutter image rating. J. Psychopathol. Behav. Assess. 30, 193–203. Frost, R., Steketee, G., Williams, L., 2000. Hoarding: a community health problem. Health Soc. Care Community 8, 229–234. Frost, R.O., Tolin, D.F., Maltby, N., 2010. Insight-related challenges in the treatment of hoarding. Cogn. Behav. Pract. 17, 404–413. Goodman, W.K., Price, L.H., Rasmussen, S.A., Mazure, C., Fleischmann, R.L., Hill, C.L., Heninger, G.R., Charney, D.S., 1989. The Yale–Brown Obsessive Compulsive Scale. I. Development, use, and reliability. Arch. Gen. Psychiatry 46, 1006–1011. Jayakumar, C., Jagadheesan, K., Verma, A.N., 2002. Caregiver's burden: a comparison between obsessive compulsive disorder and schizophrenia. Indian J. Psychiatry 44, 337–342. Kim, H., Steketee, G., Frost, R., 2001. Hoarding by elderly people. Health Soc. Work 26, 176–184. Kuipers, E., Onwumere, J., Bebbington, P., 2010. Cognitive model of caregiving in psychosis. Br. J. Psychiatry 196, 259–265. Leckman, J., Scholomskas, D., Thompson, W., Belanger, A., Weissman, A., 1982. Best estimate of lifetime psychiatric diagnosis: a methodological study. Arch. Gen. Psychiatry 39, 879–883. Mataix-Cols, D., Billotti, D., Fernández de la Cruz, L., Nordsletten, A.E., 2013. The London field trial for hoarding disorder. Psychol. Med. 43, 837–847. Mundt, J.C., Marks, I.M., Shear, M.K., Greist, J.M., 2002. The work and social adjustment scale: a simple measure of impairment in functioning. Br. J. Psychiatry 180, 461–464. NICE, 2009. Schizophrenia: core interventions in the treatment and management of schizophrenia in adults in primary and secondary care, Quick Reference Guide. NICE, London. Nordsletten, A.E., Fernández de la Cruz, L., Billotti, D., Mataix-Cols, D., 2013a. Finders keepers: the features differentiating hoarding disorder from normative collecting. Compr. Psychiatry 54, 229–237. Nordsletten, A.E., Fernández de la Cruz, L., Drury, H., Ajmi, S., Saleem, S., MataixCols, D., 2014. The family impact scale for hoarding (FISH): measure development and initial validation. J. Obsessive-Compuls. Relat. Disord. 3, 29–34. Nordsletten, A.E., Fernández de la Cruz, L., Pertusa, A., Reichenberg, A., Hotopf, M., Hatch, S.L., Mataix-Cols, D., 2013b. The structured interview for hoarding disorder (SIHD): development, further validation, and pragmatic usage. J. Obsessive-Compuls. Relat. Disord. 2, 346–350. Nordsletten, A.E., Mataix-Cols, D., 2012. Hoarding versus collecting: where does pathology diverge from play? Clin. Psychol. Rev. 32, 165–176. Novak, M., Guest, C., 1989. Applications of a multidimensional caregiver burden inventory. Gerontologist 29, 798–803. Pai, S., Kapur, R.L., 1981. The burden on the family of a psychiatric patient: development of an interview schedule. Br. J. Psychiatry 138, 332–335. Pertusa, A., Fullana, M.A., Singh, S., Alonso, P., Menchon, J.M., Mataix-Cols, D., 2008. Compulsive hoarding: OCD symptom, distinct clinical syndrome, or both? Am. J. Psychiatry 165, 1289–1298. Rasmussen, J., Steketee, G., Frost, R.O., Tolin, D.F., Brown, T.A., Assessing squalor in hoarding: The Home Environment Index, Community Mental Health, http://dx.doi.org/10.1007/s10597-013-9665-8, in press.
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Sampson, J.M., 2013. The lived experiences of family members of persons who compulsively hoard: a qualitative study. J. Marital Fam. Ther. 39, 388–402. Saxena, S., Ayers, C.R., Maidment, K.M., Vapnik, T., Wetherell, J.L., Bystritsky, A., 2011. Quality of life and functional impairment in compulsive hoarding. J. Psychiatr. Res. 45, 475–480. Steketee, G., Frost, R., Kyrios, M., 2003. Cognitive aspects of compulsive hoarding. Cognit. Ther. Res. 27, 463–479. Storch, E., Geffken, G.R., Larson, M.J., Marien, W.E., Geffken, G.R., Jacob, M.L., Goodman, W.K., Murphy, T.K., 2008. Clinical features associated with treatment-resistant pediatric obsessive-compulsive disorder. Compr. Psychiatry 49, 35–42. Thara, R., Padmavati, R., Kumar, S., Srinivasan, L., 1998. Burden assessment schedule: instrument to assess burden on caregivers of chronic mentally ill. Indian J. Psychiatry 40, 21–29.
Tolin, D.F., Fitch, K.E., Frost, R.O., Steketee, G., 2010. Family informants' perceptions of insight in compulsive hoarding. Cognit. Ther. Res. 34, 69–81. Tolin, D.F., Frost, R.O., Steketee, G., Fitch, K.E., 2008. Family burden of compulsive hoarding: results of an internet survey. Behav. Res. Ther. 46, 334–344. Vikas, A., Avasthi, A., Sharan, P., 2011. Psychosocial impact of obsessive-compulsive disorder on patients and their caregivers: a comparative study with depressive disorder. Int. J. Soc. Psychiatry 57, 45–56. Ware , J.E., Sherbourne, C.D., 1992. The MOS 36-item short-form health survey (SF36): I. Conceptual framework and item selection. Med. Care 30, 473–483. Whitney, J., Eisler, I., 2005. Theoretical and empirical models around caring for someone with an eating disorder: the reorganization of family life and interpersonal maintenance factors. J. Ment. Health 14, 575–585. Wilbram, M., Kellett, S., Beail, N., 2008. Compulsive hoarding: a qualitative investigation of partner and carer perspectives. Br. J. Clin. Psychol. 47, 59–73.
Contents lists available at ScienceDirect
Journal of Affective Disorders journal homepage: www.elsevier.com/locate/jad
Research report
Caregiver burden, family accommodation, health, and well-being in relatives of individuals with hoarding disorder Helena Drury a,n, Sana Ajmi a, Lorena Fernández de la Cruz a, Ashley E. Nordsletten a,b, David Mataix-Cols a,b a b
King's College London, Institute of Psychiatry, London, UK Karolinska Institutet, Stockholm, Sweden
art ic l e i nf o
a b s t r a c t
Article history: Received 11 November 2013 Received in revised form 30 January 2014 Accepted 31 January 2014 Available online 12 February 2014
Background: Hoarding Disorder (HD), a new diagnostic entity in DSM-5, is associated with substantial functional impairment and family frustration but data from well-characterized samples is lacking. Method: Participants were 37 individuals meeting DSM-5 criteria for HD, 55 relatives of individuals meeting criteria for HD, and comparison groups of 51 self-identified collectors and 25 relatives of collectors. All participants completed a clinician-administered diagnostic interview for HD and an online battery of standardized measures of health, well-being, and impairment. Results: Substantial functional impairment was found for both HD individuals and their relatives. HD relatives reported significantly greater carer burden and accommodation of hoarding behaviors than relatives of collectors. Perceived level of squalor, co-habiting with, and increasing age of the HD individual were significant predictors of carer burden and functional impairment in the relatives. Limitations: The use of self-identified HD individuals may have produced a bias towards participants with relatively good insight. Subjective biases in self-reported symptoms cannot be ruled out, although the use of informant-report data provided some independent validation. Conclusions: HD is associated with substantial functional impairment for both sufferers and their relatives. The level of carer burden experienced by HD relatives was comparable to or greater than that reported in the literature by relatives of individuals with dementia. The findings indicate that relatives of individuals with HD may benefit from increased support and suggest that it may be beneficial to involve family members in the treatment of HD. & 2014 Elsevier B.V. All rights reserved.
Keywords: Hoarding disorder Clutter Cost of illness Family health Activities of daily living
1. Introduction Hoarding Disorder (HD) is a psychiatric disorder characterized by persistent difficulties discarding possessions, leading to the accumulation of clutter that substantially restricts the use of active living areas, and associated clinically significant distress or functional impairment; these symptoms are not attributable to other medical or psychiatric conditions (American Psychiatric Association, 2013). Individuals who experience hoarding difficulties are known to be impaired in several areas of everyday functioning such as cooking, washing up, paying bills, and performing well at work (Frost et al., 2013; Kim et al., 2001). As a result of their particular challenges in maintaining a clean home, individuals with hoarding
n Correspondence to: Southwark Psychological Therapies Service (NE Cluster), The Munro Centre, 66 Snowfields, London SE1 3SS, UK. E-mail address: [email protected] (H. Drury).
http://dx.doi.org/10.1016/j.jad.2014.01.023 0165-0327 & 2014 Elsevier B.V. All rights reserved.
difficulties have also been found to be at increased risk for chronic medical conditions and higher rates of health care utilization compared to non-hoarding individuals (Tolin et al., 2008). A study of individuals with Obsessive-Compulsive Disorder (OCD) treated in an intensive multimodal program found that those with hoarding symptoms and OCD reported lower quality of life than nonhoarding OCD individuals, particularly on domains assessing safety and living arrangements (Saxena et al., 2011). In addition to the impact experienced directly by those who hoard, research has suggested that those caring for, or living with, a hoarding individual also experience repercussions of hoarding (see e.g., Tolin et al., 2008). Frost et al. (2000) for example, highlighted that hoarding can lead to violations of local health, housing and sanitation laws, which have the potential to impact on family, carers, neighbors, and the wider community. Lower rates of marriage and higher rates of divorce have also been reported for those who hoard in both postal surveys of selfidentified individuals with hoarding (Steketee et al., 2003) and individuals meeting diagnostic criteria for HD who were visited at
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home (Nordsletten et al., 2013a), suggesting problems in domestic relationships. In an internet-based survey, Tolin et al. (2008) found higher rates of frustration among the family members of those who hoard compared to the families of those seeking OCD treatment. Furthermore, in that study, the relatives' perceptions of poorer insight, increased hoarding severity, and clutter in their childhood environment were associated with increased frustration. However, the question of whether an individual's hoarding severity and insight are related to different types of family impacts – for instance, health repercussions versus impact on daily functioning – has not yet been explored. In a qualitative investigation in which partners and carers of individuals with hoarding were interviewed in their family homes, Wilbram et al. (2008) identified a range of ways in which carers support individuals with hoarding in completing basic activities that would otherwise be neglected such as self-care and managing finances. This work also described significant accommodation of hoarding behaviors by carers, who would not only avoid disturbing clutter in order to reduce the hoarding individual's distress, but also sometimes physically accomodated clutter in their own homes when there is insufficient space in the hoarder's residence (Wilbram et al., 2008). Taken together, this preliminary literature clearly suggests that hoarding may adversely impact both the sufferers and those around them, though much of the evidence is based on postal or web-based surveys of self-identified individuals or relatives of individuals with hoarding difficulties. As HD has only recently been recognized as a disorder in its own right, few of the abovementioned studies used DSM-5 diagnostic criteria to select participants. This is critical as some of the reported impacts may in fact be due to other medical or psychiatric conditions that are known to result in the pathological accumulation of objects, rather than HD itself. The present study aimed to further elucidate the nature and extent of impairment associated with strictly diagnosed HD, both for sufferers themselves and their relatives, as compared with a control group of healthy collectors and their relatives. Prior work has highlighted the similarities between hoarding and collecting behavior, with participants in both activities showing an interest in the accumulation of possessions and a strong emotional attachment to these items (e.g., Nordsletten and Mataix-Cols, 2012; Nordsletten et al., 2013a). As such, collectors permit us to examine whether the features under investigation (e.g., family burden) are specific to HD, or whether they are a product, more generally, of environments that place an emphasis on the acquisition of, or affection for, objects. In particular, the present study aimed to quantify and directly compare the level of functional impairment, health and well-being for individuals with HD compared to HD relatives and the nonclinical comparison groups using standardized measures. Family accommodation was also identified as an area of interest since this has not been systematically examined in previous research. It was predicted that individuals with HD and HD relatives would report greater functional impairment and poorer health and well-being compared to collectors and their relatives. It was also predicted that HD relatives would report greater carer burden, accommodation, and impact compared to relatives of collectors.
2. Methods 2.1. Participants and procedures Individuals with hoarding difficulties were recruited primarily from London-based support groups. Collectors were recruited primarily via online advertisements on relevant forums and
popular social networks. Additional participants were recruited through existing contacts with hoarding and collecting individuals, some of whom had engaged previously with our research at the Institute of Psychiatry. The sample included 37 individuals meeting DSM-5 criteria for HD, 55 relatives of individuals meeting criteria for HD (according to the informant-report), 51 selfidentified collectors, and 25 relatives of self-identified collectors. In the HD group, 19 participants (51%) had a relative who also participated in the study as part of the HD relatives group (one HD participant had two relatives who participated) and 18 (49%) took part in the study without a relative. In the collector group, 24 participants (47%) had a relative who also participated in the study as a relative of a collector and 27 (53%) took part in the study without a relative. The remainder of the two relative groups consisted of a further 35 (64%) HD relatives and 1 (4%) relative of a collector who took part in the study without an index hoarding/collecting relative. The final sample were part of a larger number of individuals (HD group N ¼41, HD relatives N ¼ 60, collector group N ¼55, relatives of collectors N ¼ 26) who were interviewed, some of whom were excluded from the final analyses because they did not meet our inclusion criteria. For the HD group and HD relatives, the main inclusion criterion was that the index individual with hoarding met diagnostic criteria for HD. For the collecting group and relatives of collectors, the main inclusion criterion was that the index collecting individual had at least one collection of items of a similar type or theme, and the main exclusion criterion was the index collecting individual meeting criteria for HD. Five selfidentified individuals with hoarding were excluded due to clutter below the clinical cut-off (Criterion C) and two because hoarding was found to be due to OCD concerns (Criterion F). Three participants who self-identified as collectors in fact met diagnostic criteria for HD and were therefore included in the HD sample. One participant self-identified as a collector but when interviewed reported that he did not currently have a specific collection. Two relatives of individuals with hoarding were excluded because their relatives with hoarding did not meet Criterion C, and three because their relatives with hoarding did not meet Criterion F (2 had hoarding linked to OCD concerns and one described clutter due to Attention Deficit Hyperactive Disorder). One relative of a collector was excluded because their relative did not have a clearly defined collection. After a brief screening to gauge potential suitability for the study, participants were interviewed over the telephone and administered the Structured Interview for Hoarding Disorder (SIHD; Nordsletten et al., 2013b), a semi-structured interview that assists in the diagnosis of HD according to DSM-5 diagnostic criteria (American Psychiatric Association, 2013). The HD and collector groups reported on their own hoarding/collecting behaviors while the relatives were asked to report on the behavior of the individual with hoarding/collecting. Participants also completed a series of online questionnaires (see Section 2.2) accessed through a website set up for the study. Following completion of the diagnostic interviews and questionnaires, the presence of HD was determined through the best estimate diagnosis procedure, as described by Leckman et al. (1982). In the present study, a group of four HD researchers met regularly and reviewed all available information for each participant, including transcripts of the phone interviews and ratings on the various hoarding severity measures. For hoarding/collecting participants whose relatives also took part in the study, informantratings as well as self-ratings were reviewed in the consensus meetings. Participants were provided with a small gift voucher (d5) as a token of appreciation for their participation. The study was reviewed and approved by the King's College Research Ethics Committee and all participants gave informed consent in accordance with this.
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
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range (Table 3). Higher scores on these measures indicate greater burden and accommodation.
2.2. Measures 2.2.1. Self-report measures completed by HD and collector groups Individuals meeting criteria for HD and healthy collectors completed three measures assessing hoarding symptoms: a measure relating to the diagnostic criteria for HD, the Hoarding Rating Scale – Self Report (HRS-SR; Tolin et al., 2008), a measure of hoarding-related beliefs, the Saving Cognitions Inventory (SCI; Steketee et al., 2003), and a visual measure of the severity of clutter, the Clutter Image Rating (CIR; Frost et al., 2008). The HRSSR was selected as a measure of hoarding severity since it is widely used, is very brief, has excellent psychometric properties, has both self- and informant report versions (e.g., Tolin et al., 2008, 2010), and to permit direct comparison with the findings of Tolin et al. (2008), who also examined family burden in hoarding. Level of squalor was assessed using the Home Environment Index revised (HEI; Rasmussen et al., in press). In the current study, internal consistencies for the HRS-SR, SCI, CIR, and HEI were in the good to excellent range in all study groups (Table 1). The HD and collector groups also completed the Short Form Health Survey (SF-36; Ware and Sherbourne, 1992), a measure of health and well-being, and the Work and Social Adjustment Scale (WSAS; Mundt et al., 2002), a measure of impairment in areas of everyday functioning such as work, home management, and personal relationships. In the current study, the internal consistency of the SF-36 and WSAS was excellent in all study groups (Table 2). For each of these measures, higher scores indicate greater hoarding severity/impairment, with the exception of the SF-36, where higher scores indicate greater health and well-being.
2.2.3. Informant-report measures completed by HD relatives and relatives of collectors HD relatives and relatives of collectors completed informantreport versions of the HRS-SR, the CIR, and the HEI. They also rated the extent to which their hoarding/collecting relative had insight into any difficulties caused by the hoarding/collecting, using an adaptation of item 11 from the Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) (Goodman et al., 1989), full details of which are described by Tolin et al. (2010). 2.3. Statistical analyses Data were analyzed using SPSS version 20. Categorical data were compared using chi-square tests. Continuous, independent data were compared using One-way Analysis of Variance (ANOVA) for comparisons involving all four groups or Student's t tests for comparisons involving two groups. Mann–Whitney U tests or Analysis of Variance (ANOVA), with gender and age as a covariate, were used when appropriate. Multiple regression was employed to examine potential predictors of impact on HD relatives; variables were entered into the models using the stepwise approach. All tests were two-tailed at p¼ .05.
3. Results 3.1. Demographics HD (mean age¼54.08) and collector (mean age¼52.39) groups did not differ significantly in age, although those in the HD group were significantly older than both HD relatives (mean age¼ 40.33) and relatives of collectors (mean age¼45.44). The proportion of male participants was significantly higher (p o.001) in the collector group (66.7%) compared to the HD group (15.8%); there was no significant difference (p 4.1) between the proportion of male and female participants in the HD relatives group (21.8% males) compared to the relatives of collectors group (24.0% males). HD relatives and relatives of collectors were also asked to state their relationship with their hoarding/collecting relative. The majority of HD relatives were children of individuals with
2.2.2. Self-report measures completed by HD relatives and relatives of collectors HD relatives and relatives of collectors completed self-report versions of the HRS-SR, the SCI, the SF-36, and the WSAS. In addition, they also completed the Caregiver Burden Inventory (CBI; Novak and Guest, 1989) and the Family Impact Scale for Hoarding Disorder (FISH; Nordsletten et al., 2014), a scale developed to assess both the level of family accommodation to the hoarding behaviors displayed by the relative who hoards and the associated burden on families. In the current study, the internal consistency of the CBI and the FISH was in the good to excellent Table 1 Mean scores and significant differences for self-reported hoarding characteristics. Individuals with HD (n ¼37) Mean
(SD) a
HRS (range 0–40) 25.92 SCI Emotional attachment 42.38a (range 10–70) Control (range 3–21) 16.35a Responsibility (range 6–42) 25.22a Memory (range 5–35) 21.03a Total (range 24–168) 104.97a CIR (range 1–9) Bedroom Kitchen Living room HEI (range 0–45)
4.54 3.51 4.49 13.46
(5.97)
Collectors (n¼ 51)
α .79
Mean 6.20
b
b
(13.66)
22.51
(4.02) (7.47) (6.18) (25.71)
.93
10.27b 13.90b 9.37b 56.06b
(1.80) (1.50) (1.61) (6.39)
– – – .88
1.50 1.54 1.54 4.92
(SD) (4.98)
α
HD relatives (n¼55) Mean
.84 7.00
b
(SD) (6.72)
c
Relatives of collectors (n¼ 25)
α
Mean
.84 5.80
b
(SD)
.65
(10.14)
51.24
o .001nnn
.48
22.64 36.01 47.28 59.22 t
o .001nnn o .001nnn o .001nnn o .001nnn p
.29 .40 .46 .52 Cohen's d
9.88 7.50 10.26 7.45
o .001nnn o .001nnn o .001nnn o .001nnn
2.27 1.70 2.33 1.68
(6.43)
16.44
(4.48) (6.78) (3.86) (22.46) .92
9.69b 11.67b 9.65b 46.94b
(4.05) (6.24) (5.73) (18.92) .92
8.72b 10.72b 8.48b 44.36b
(5.32) (6.96) (5.42) (25.06)
.96
– – – –
– – – –
– – – –
– – – –
– – – –
– – – –
Note: Means with different superscripts differ significantly after Tukey's-B post hoc correction. CIR ¼ Clutter Image Rating, HEI¼ Home Environment Index, HRS¼ Hoarding Rating Scale, and SCI ¼Saving Cognitions Inventory. nnn
p o .001.
Partial eta squared
o .001
15.93
– – – .72
p
101.03
.85
(12.15)
(.58) (.65) (.79) (3.27)
F
nnn
(6.36) b,c
α
Statistics Significance Effect size
10
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
Table 2 Mean scores and standard deviations for self-reported health and well-being and functional impairment. Individuals with HD (n ¼37) Mean WSAS (subscale range 0–8) Work 4.35a Home 5.16a Social leisure 4.64a Private leisure 3.97a Relationships 4.11a WSAS total (range 0–40) 17.89a SF-36 (range 0–100) Physical functioning 66.35a Role physical 39.86a Role emotional 35.14a Energy 31.22a Emotional health 46.70a Social functioning 48.31a Pain 59.80a General health 41.49a SF-36 total 48.75a
(SD)
(2.28) (1.57) (2.15) (2.30) (2.12) (6.92) (26.66) (43.88) (35.09) (22.00) (21.25) (29.19) (30.16) (22.45) (20.88)
Collectors (n¼51)
α
.85
Mean
.47b 1.02b .49b .84b .65b 3.00b b
.95
88.43 82.84b 85.62b 61.47b 74.35b 88.73b 80.25b 66.27b 78.08b
HD relatives (n¼ 55) Relatives of collectors (n ¼25)
(SD)
α
(.90) (1.22) (1.10) (1.69) (1.11) (4.15)
3.35a 4.02a 3.62a 3.04a 3.96a .85 14.64a
(18.21) (31.02) (28.48) (18.23) (14.80) (15.66) (19.59) (15.81) (11.21) .88
Mean
(SD)
(2.57) (2.63) (2.70) (2.70) (2.65) (8.60)
b
86.55 67.73b 46.67a 45.36c 56.15a 65.45c 71.27a.b 60.27b 65.62c
α
.86
(21.28) (33.79) (42.36) (23.23) (21.32) (30.52) (25.00) (23.06) (20.42) .96
Mean
.64b 1.32b .68b 1.40b .44b 3.84b b
90.80 77.00b 70.67b 55.40b,c 70.24b 78.50b,c 71.50a,b 68.00b 74.83b,c
(SD)
(.99) (1.82) (1.60) (2.08) (.87) (5.66) (13.36) (33.79) (41.19) (20.66) (16.82) (25.14) (30.88) (24.15) (15.93)
Statistic Significance Effect size
α
F
p
Partial eta squared
.89
40.99 44.37 42.36 17.20 43.51 51.53
o .001nnn o .001nnn o .001nnn o .001nnn o .001nnn o .001nnn
.43 .45 .44 .24 .44 .49
.93
6.13 6.82 16.94 15.90 18.68 19.24 4.52 12.04 21.86
.001nnn o .001nnn o .001nnn o .001nnn o .001nnn o .001nnn .005nn o .001nnn o .001nnn
.10 .11 .24 .23 .26 .26 .08 .18 .29
Note: Means with different superscripts differ significantly after Tukey's-B post hoc correction. SF-36 ¼ Short Form Health Survey and WSAS ¼ Work and Social Adjustment Scale. nnn nn
p o.001. p o.01.
Table 3 Mean scores and standard deviations for carer burden, impact, and accommodation. HD relatives (n ¼55) Mean
(SD)
CBI Time dependence (range 0–20) Developmental burden (range 0–20) Physical burden (range 0–16) Social burden (range 0–20) Emotional burden (range 0–20) CBI total score (range 0–96)
6.56 10.82 5.13 6.89 12.40 41.80
(5.32) (5.71) (4.23) (5.09) (5.41) (21.78)
FISH Accommodation (range 0–18) Impact (range 0–27) FISH total (range 0–45)
8.05 13.05 21.11
(3.70) (6.38) (7.79)
Relatives of collectors (n¼ 25)
α
Mean
(SD)
.96
1.92 2.60 2.48 1.60 3.28 11.88
(3.11) (3.52) (3.38) (2.06) (3.97) (12.00)
.78
3.72 2.24 5.96
(3.94) (3.03) (6.00)
Statistic
Significance
Effect size
t
p
Cohen's d
.91
4.90 7.88 2.75 6.61 8.46 7.90
o .001nnn o .001nnn .007nn o .001nnn o .001nnn o .001nnn
1.06 1.73 .69 1.36 1.92 1.70
.83
4.76 10.27 8.62
o .001nnn o .001nnn o .001nnn
1.13 2.16 2.18
α
Note: CBI ¼Caregiver Burden Inventory and FISH ¼Family Impact Scale for Hoarding. nnn nn
p o.001. p o.01.
hoarding (80.0%), whereas the majority of relatives of collectors were spouses (60.0%). Relatives of collectors were significantly more likely (p o.001) to cohabit with the relative with collecting/ hoarding than HD relatives (76.0% vs. 21.8%, respectively). The inclusion of age, gender, and relationship to the hoarding/ collecting individual as covariates in subsequent analyses indicated that these factors did not impact the relationships of interest, except for three sub-scales of the SF-36 – physical functioning, role limitations due to physical functioning and pain – with age emerging as a significant covariate for these three scales, while gender was significant only for physical functioning. Results for these subscales are therefore reported after controlling for the covariates (see Section 3.3 below). 3.2. Hoarding characteristics Members of the HD group reported significantly higher hoarding symptoms (HRS-SR) and saving cognitions (SCI) than
the other three groups. Collectors scored significantly higher on the emotional attachment to possessions subscale of the SCI compared to HD relatives; there were no other significant differences between any of the other groups (Table 1). The HD group also reported significantly higher levels of clutter (CIR) and a higher level of squalor in their own houses (HEI) compared to the collector group. There was a significant difference between groups in the number of participants falling into the different insight categories (Z¼5.46, p o.001). The most frequently endorsed category among the collectors was the ‘not applicable’ category (n ¼12), since collecting did not cause any problems for them, followed by the categories ‘excellent’ (n¼ 4), ‘good’ (n¼ 4), ‘absent’ (n ¼3), and ‘fair’ (n ¼2). On the other hand, HD relatives were more likely to endorse the categories ‘fair’ (n¼ 15), ‘poor’ (n ¼15), and ‘absent’ (n ¼12) insight, compared to the categories ‘good’ (n¼ 10) and ‘excellent’ (n ¼3), indicating poor informant-rated insight in the HD group.
p o.001. po .05. n
nnn
.29 4.99 o.001 3.86 o.001nnn .47 4.60 o.001nnn .09 CBI .56 WSAS .46 FISH .54
nnn
p
Note: CBI¼ Carer Burden Inventory, FISH¼ Family Impact Scale for Hoarding, HEI ¼ Home Environment Index, HRS¼ Hoarding Rating Scale, SF-36 ¼Short Form Health Survey, SIHD ¼Structured Interview for Hoarding Disorder, WSAS ¼ Work and Social Adjustment Scale, and YBOCS ¼ Yale-Brown Obsessive-Compulsive Scale.
.035n .312 .104 2.17 1.02 1.65 .24 .12 .19 .995 .529 .243 .01 .64 1.18 .77 .444 .01 .67 .508 .09 1.33 .190 .14 .11 .10 .20 .970 .372 .442 .04 .90 .78 .01 .11 .10 .725 .171 .623 .35 1.39 .50 1.96 .056 .04 2.55 .014n .18 1.98 .053 .06 2.65 .011 .22 3.79 o .001nnn .32 .77 .448 .23
p t t Beta Beta t p t Beta p t Beta
n
Beta t Beta t
Age of hoarder Live with hoarder HEI
Predictors
This study was designed to assess the different ways in which HD may impact both individuals who hoard and their relatives. As expected, the HD group reported a higher level of hoarding symptoms than all other groups. Both those with HD and HD relatives reported equally high levels of functional impairment on the WSAS compared to the collectors and their relatives. Similarly, individuals with HD reported lower health and well-being than collectors and relatives of collectors across all of the subscales of the SF-36. HD relatives reported lower emotional well-being than relatives of collectors and reported an equivalent impairment in functioning to those with HD on three of the eight subscales of the SF-36: role limitations due to emotional problems, emotional wellbeing, and pain. In addition, HD relatives reported higher levels of carer burden, accommodation of hoarding behaviors, and impact of hoarding behaviors compared to relatives of collectors. Overall, our findings are consistent with previous studies, which have reported higher levels of functional impairment for individuals with HD as compared to collectors (Mataix-Cols et al., 2013; Nordsletten et al., 2013a), or relative to a healthy comparison group (Pertusa et al., 2008). The findings of the present study extended previous research by quantifying the level of functional impairment previously reported for relatives of individuals with hoarding (e.g. Frost and Gross, 1993; Tolin et al., 2008), establishing that this impairment is present for relatives of those meeting criteria for a diagnosis of HD, and highlighting that the impairment experienced by relatives is in fact equivalent to the level of functional impairment reported by those meeting criteria for HD.
Table 4 Results of regression of possible predictors of the impact of hoarding. SF-36
4. Discussion
p
Insight (using adapted YBOCS item)
Clinician-rated insight (from SIHD)
Multiple linear regression was used to analyze potential predictors of the impact of hoarding on HD relatives for each of the different impact measures. As can be seen in Table 4, squalor (HEI) was a significant predictor for scores on the CBI, WSAS, and the FISH and living with the individual with HD was a signficant predictor for the CBI and WSAS. The age of the individual with HD was a significant predictor for the WSAS, and the gender of the individual with HD was a significant predictor for the CBI with increased impairment reported for relatives of females with HD; none of these predictors reached significance for the FISH. No significant predictors were found for total scores on the SF-36.
p
3.4. Predictors of hoarding impact on relatives
Beta t
HRS
p
Relationship with hoarder
p
Individuals with HD and HD relatives reported significantly greater impairment than collectors and relatives of collectors across all of the functional domains measured by the WSAS. There were no significant differences between individuals with HD and HD relatives for any of the domains, nor between collectors and relatives of collectors (Table 2). Similarly, on the SF-36 individuals with HD reported poorer health and well-being compared to collectors and relatives of collectors. HD relatives scored significantly lower than relatives of collectors on two subscales: emotional well-being and role limitations due to emotional problems. There were no significant differences between individuals with HD and HD relatives on three of the eight subscales (role limitations due to emotional problems, emotional well-being, and pain). For carer burden, HD relatives reported significantly higher levels of burden than relatives of collectors for each of the five scales on the CBI. For the FISH, examination of the mean scores revealed that HD relatives reported significantly higher levels of accommodation and impact of the hoarding behaviors compared to relatives of collectors (Table 3).
Beta
Gender of hoarder Overall model fit (R2)
3.3. Impact
11
.43 .36 .29
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
12
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
Similarly, our findings of lower health and well-being for individuals with HD and HD relatives are in agreement with previous research which has suggested increased rates of illhealth in hoarding (e.g., Frost et al., 2000; Tolin et al., 2008). Our findings on this point suggest a differential impact on individuals with HD compared to HD relatives, with those meeting criteria for HD reporting lower health and well-being across a range of physical and social-emotional domains, whereas impairment for HD relatives was restricted to social and emotional functioning. It should be noted that the level of impairment reported by HD relatives on these social-emotional domains was, by and large, equivalent to the levels reported by those meeting criteria for HD. These findings could indicate that HD relatives may be at increased risk for developing mood and anxiety disorders as a result of the stress associated with caring for someone who hoards. On the CBI, HD relatives reported higher levels of burden than relatives of collectors across a range of domains, including physical, social, and emotional burden. Mean scores for HD relatives exceeded the mean scores reported by Novak and Guest (1989) for relatives of those with Alzheimer's disease or other organic brain syndromes on three of the five subscales: developmental burden (10.65 vs. 7.08, respectively), social burden (6.92 vs. 2.54, respectively), and emotional burden (12.47 vs. 2.02, respectively). Scores for time dependence (6.43 vs. 6.98, respectively) and physical burden (5.20 vs. 5.47, respectively) were approximately equivalent. These findings are consistent with a previous qualitative analysis, which identified loss of normal family life, marginalization, and negative impact on relationships as key themes in the experience of relatives of individuals with hoarding (Wilbram et al., 2008). Similarly, Tolin et al. (2008) found higher levels of family frustration in relatives of individuals with hoarding compared to family members of those seeking treatment for OCD, indicating that family burden may be particularly high in hoarding. To date, no work has examined family burden in OCD using the CBI, although OCD has been found to have a comparable family burden to psychosis (Jayakumar et al., 2002) on the Burden Assessment Schedule (BAS; Thara et al., 1998) and a greater family burden than depression (Vikas et al., 2011) on the Family Burden Interview Schedule (FBIS; Pai and Kapur, 1981). Family accommodation of hoarding has not previously been examined systematically, although qualitative reports have signaled its presence (e.g., Wilbram et al., 2008). High levels of family accommodation have also been reported in psychiatric disorders such as OCD (e.g., Calvocoressi et al., 1995) and eating disorders (e.g., Whitney and Eisler, 2005) and are known to predict poorer treatment response (e.g., Storch et al., 2008). In this study, HD relatives reported higher rates of accommodation and burden than relatives of collectors on a new measure of family impact in HD, the FISH (Nordsletten et al., 2014). Previous research has linked increased family frustration with poorer insight and increased hoarding severity (Tolin et al., 2008). We assessed both hoarding severity and insight using the same methodology as Tolin et al. (2008) and also included clinicianratings of insight using the Structured Interview for Hoarding Disorder (Nordsletten et al., 2013b). However, none of these factors emerged as a significant predictor in our sample for any of the impact measures. Levels of hoarding severity in the present study were similar to those reported by Tolin et al. (2008), indicating that differences in presentation are unlikely to account for the differences in findings; level of insight was not reported by Tolin et al. (2008). Different measures of burden may vary in their relationship to features of hoarding; for example, family members may experience greater frustration when they feel that their
relative with hoarding has poor insight compared to a relative who cares for an individual with hoarding with equivalent severity but better insight. Similarly, the HRS-SR provides a general measure of hoarding symptoms (combining clutter, acquisition, and difficulties discarding) and measures such as the HEI that focus on specific features of hoarding may relate more closely to some measures of burden (e.g., relatives of an individual with HD who lives in a more squalid environment may spend more time cleaning the hoarded house). Research examining measures of family frustration as well as burden would help to assess these issues. In the present study, perceived squalor and cohabiting with an individual with HD were significant predictors of multiple measures of impairment, suggesting that these may be particularly important factors in determining the impact of hoarding on relatives. Age of the individual with HD was also a significant predictor, with greater age of the individuals with HD linked to higher impact on HD relatives. Interestingly, relationship with the individual with HD was not a significant predictor of any of the impact measures. Relationship with the individual with HD may overlap somewhat with other demographic variables such as age of the individual with HD and cohabitation. However, the use of stepwise regression in the present study identified only age and cohabitation as significant predictors and not relationship to the individual with HD. The present study was not designed to test whether different relationships with an individual with HD are associated with different types or levels of burden, and the majority of HD relatives (80%) were children of individuals with HD. However, previous research has also found no effect of type of relationship on family frustration experienced by relatives of individuals with hoarding (Tolin et al., 2008). Further research should investigate whether the relationship between impact and the age of individuals with HD is a function of accumulation of stress over time, or linked to increased physical and mental health needs associated with older age.
4.1. Clinical implications The findings of the present study have a number of potential implications for interventions targeting individuals with HD and their family members. Firstly, in terms of assessment, the findings of the present study suggest that the CBI, SF-36, WSAS, and FISH are sufficiently sensitive to detect the impact of hoarding on both individuals with HD themselves and their relatives. In terms of identifying those with a greater need for treatment, the predictors of impact on family members (squalor, living with the individual with HD, and age of the individual with HD) could be used to identify HD relatives who may particularly benefit from intervention. Previous research has found that HD relatives would like to receive education and support to help them understand the hoarding, how best to support their relative, and how to cope with the impact of hoarding on their own lives (e.g., Sampson, 2013; Wilbram et al., 2008). In other conditions which have substantial impact on family members, such as psychosis, family interventions have been found to reduce the rates of relapse while improving social functioning and treatment adherence among persons with psychosis (Berglund et al., 2003; Bird et al., 2010; Cuijpers, 1999; Kuipers et al., 2010). In addition, family interventions have been found to be cost effective, to positively impact carer burden, and to promote readiness to continue providing care (NICE, 2009). The above lines of research suggest that family interventions for HD may prove to be a valuable area for further research, particularly given that some individuals with HD may not self-identify as individuals with hoarding due to poor insight (see e.g., Frost et al., 2010).
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
4.2. Strengths and limitations One major strength of this study compared to previous literature is that all participants were screened using the DSM-5 diagnostic criteria for HD. Most of the previous research examining hoarding has either recruited participants on the basis of a diagnosis of OCD, or did not carry out full screening for the diagnostic criteria of HD (e.g., Tolin et al., 2008). The present study also used self-identified collectors as a control group, since collecting shares several features with hoarding (see Nordsletten et al., 2013a) but is generally not considered to be problematic. The use of this sample allowed further identification of features that distinguish normal relationships with objects from pathological hoarding. Previous research has also generally not used standardized measures of impact either to quantify the level of functional impairment characterizing individuals who hoard, or to compare these impairments to the impacts experienced by their relatives. The present study also had several limitations. Firstly, the use of self-identified individuals with HD and collectors may have produced a bias towards participants with relatively good insight into their condition. Secondly, several of the groups differed in age, gender distribution, and relationship to the individual with HD/ collector. Nonetheless, previous studies have found that participants with hoarding are more likely to be female and collectors more likely to be male (e.g., Nordsletten et al., 2013a). Similarly, previous studies recruiting relatives of individuals with hoarding symptoms (e.g., Tolin et al., 2008, 2010) observed that relative samples consist mainly of adult children of individuals with hoarding rather than spouses, perhaps because of the lower rates of marriage and higher rates of divorce associated with hoarding (e.g., Steketee et al., 2003). These differences in demographics are therefore likely to represent underlying differences in the populations sampled, and more exact matching of the groups may have meant that participants were less representative of the typical hoarding and collecting populations. Another limitation of the present study is the reliance on selfreport data and telephone interviews of participants (rather than conducting interviews in the home). In the context of hoarding, previous research has highlighted the value of independent observations of clutter (e.g., DiMauro et al., 2013) and the utility of photographs as an aid to diagnosis (Fernández de la Cruz et al., 2013). The use of informant-report data provided some independent validation of hoarding symptoms although family members may potentially have some biases in their reporting (see e.g., DiMauro et al., 2013). Further research would benefit from observation or indirect tests of the measures of interest. Finally, it may be helpful for further research to include measures of family frustration (as used by Tolin et al., 2008) to permit direct comparison across studies, although the use of the FISH in the present study was intended to offer a hoarding-specific assessment of family impact.
5. Conclusions HD is associated with substantial functional impact for individuals with HD and HD relatives. Family accommodation of hoarding behaviors appears to be an important area to be incorporated into treatment protocols, and family members may also benefit from education and support to help them understand how best to support their relatives and how to cope with the impact of hoarding on their own lives. Role of funding source The study was funded by King's College London as part of Dr. Drury's training as a clinical psychologist.
13
Conflict of interest All authors declare that they have no conflicts of interest.
Acknowledgments The authors wish to thank all the participants who took part in the study. Their time and enthusiasm for the project is greatly appreciated.
References American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders. (5th ed.) Washington, DC: American Psychiatric Association. Berglund, N., Vahlne, J.O., Edman, A., 2003. Family intervention in schizophrenia: impact on family burden and attitude. Soc. Psychiatry Psychiatr. Epidemiol. 38, 116–121. Bird, V., Premkumar, P., Kendall, T., Whittington, C., Mitchell, J., Kuipers, E., 2010. Early intervention services, cognitive-behavioural therapy and family intervention in early psychosis: systematic review. Br. J. Psychiatry 197, 350–356. Calvocoressi, L., Lewis, B., Harris, M., Trufan, S.J., Goodman, W.K., McDougle, C.J., Price, L.H., 1995. Family accommodation in obsessive-compulsive disorder. Am. J. Psychiatry 152, 441–443. Cuijpers, P., 1999. The effects of family interventions on relatives' burden: a metaanalysis. J. Ment. Health 8, 275–285. DiMauro, J., Tolin, D.F., Frost, R.O., Steketee, G., 2013. Do people with hoarding disorder under-report their symptoms? J. Obsessive-Compuls. Relat. Disord. 1, 130–136. Fernández de la Cruz, L., Nordsletten, A., Billotti, D., Mataix-Cols, D., 2013. Photograph-aided assessment of clutter in hoarding disorder: is a picture worth a thousand words? Depress. Anxiety 39, 61–66. Frost, R.O., Gross, R.C., 1993. The hoarding of possessions. Behaviour Research and Therapy 31, 367–381. Frost, R.O., Hristova, V., Steketee, G., Tolin, D.F., 2013. Activities of daily living scale in hoarding disorder. J. Obsessive-Compuls. Relat. Disord. 2, 85–90. Frost, R.O., Steketee, G., Tolin, D.F., Renaud, S., 2008. Development and validation of the clutter image rating. J. Psychopathol. Behav. Assess. 30, 193–203. Frost, R., Steketee, G., Williams, L., 2000. Hoarding: a community health problem. Health Soc. Care Community 8, 229–234. Frost, R.O., Tolin, D.F., Maltby, N., 2010. Insight-related challenges in the treatment of hoarding. Cogn. Behav. Pract. 17, 404–413. Goodman, W.K., Price, L.H., Rasmussen, S.A., Mazure, C., Fleischmann, R.L., Hill, C.L., Heninger, G.R., Charney, D.S., 1989. The Yale–Brown Obsessive Compulsive Scale. I. Development, use, and reliability. Arch. Gen. Psychiatry 46, 1006–1011. Jayakumar, C., Jagadheesan, K., Verma, A.N., 2002. Caregiver's burden: a comparison between obsessive compulsive disorder and schizophrenia. Indian J. Psychiatry 44, 337–342. Kim, H., Steketee, G., Frost, R., 2001. Hoarding by elderly people. Health Soc. Work 26, 176–184. Kuipers, E., Onwumere, J., Bebbington, P., 2010. Cognitive model of caregiving in psychosis. Br. J. Psychiatry 196, 259–265. Leckman, J., Scholomskas, D., Thompson, W., Belanger, A., Weissman, A., 1982. Best estimate of lifetime psychiatric diagnosis: a methodological study. Arch. Gen. Psychiatry 39, 879–883. Mataix-Cols, D., Billotti, D., Fernández de la Cruz, L., Nordsletten, A.E., 2013. The London field trial for hoarding disorder. Psychol. Med. 43, 837–847. Mundt, J.C., Marks, I.M., Shear, M.K., Greist, J.M., 2002. The work and social adjustment scale: a simple measure of impairment in functioning. Br. J. Psychiatry 180, 461–464. NICE, 2009. Schizophrenia: core interventions in the treatment and management of schizophrenia in adults in primary and secondary care, Quick Reference Guide. NICE, London. Nordsletten, A.E., Fernández de la Cruz, L., Billotti, D., Mataix-Cols, D., 2013a. Finders keepers: the features differentiating hoarding disorder from normative collecting. Compr. Psychiatry 54, 229–237. Nordsletten, A.E., Fernández de la Cruz, L., Drury, H., Ajmi, S., Saleem, S., MataixCols, D., 2014. The family impact scale for hoarding (FISH): measure development and initial validation. J. Obsessive-Compuls. Relat. Disord. 3, 29–34. Nordsletten, A.E., Fernández de la Cruz, L., Pertusa, A., Reichenberg, A., Hotopf, M., Hatch, S.L., Mataix-Cols, D., 2013b. The structured interview for hoarding disorder (SIHD): development, further validation, and pragmatic usage. J. Obsessive-Compuls. Relat. Disord. 2, 346–350. Nordsletten, A.E., Mataix-Cols, D., 2012. Hoarding versus collecting: where does pathology diverge from play? Clin. Psychol. Rev. 32, 165–176. Novak, M., Guest, C., 1989. Applications of a multidimensional caregiver burden inventory. Gerontologist 29, 798–803. Pai, S., Kapur, R.L., 1981. The burden on the family of a psychiatric patient: development of an interview schedule. Br. J. Psychiatry 138, 332–335. Pertusa, A., Fullana, M.A., Singh, S., Alonso, P., Menchon, J.M., Mataix-Cols, D., 2008. Compulsive hoarding: OCD symptom, distinct clinical syndrome, or both? Am. J. Psychiatry 165, 1289–1298. Rasmussen, J., Steketee, G., Frost, R.O., Tolin, D.F., Brown, T.A., Assessing squalor in hoarding: The Home Environment Index, Community Mental Health, http://dx.doi.org/10.1007/s10597-013-9665-8, in press.
14
H. Drury et al. / Journal of Affective Disorders 159 (2014) 7–14
Sampson, J.M., 2013. The lived experiences of family members of persons who compulsively hoard: a qualitative study. J. Marital Fam. Ther. 39, 388–402. Saxena, S., Ayers, C.R., Maidment, K.M., Vapnik, T., Wetherell, J.L., Bystritsky, A., 2011. Quality of life and functional impairment in compulsive hoarding. J. Psychiatr. Res. 45, 475–480. Steketee, G., Frost, R., Kyrios, M., 2003. Cognitive aspects of compulsive hoarding. Cognit. Ther. Res. 27, 463–479. Storch, E., Geffken, G.R., Larson, M.J., Marien, W.E., Geffken, G.R., Jacob, M.L., Goodman, W.K., Murphy, T.K., 2008. Clinical features associated with treatment-resistant pediatric obsessive-compulsive disorder. Compr. Psychiatry 49, 35–42. Thara, R., Padmavati, R., Kumar, S., Srinivasan, L., 1998. Burden assessment schedule: instrument to assess burden on caregivers of chronic mentally ill. Indian J. Psychiatry 40, 21–29.
Tolin, D.F., Fitch, K.E., Frost, R.O., Steketee, G., 2010. Family informants' perceptions of insight in compulsive hoarding. Cognit. Ther. Res. 34, 69–81. Tolin, D.F., Frost, R.O., Steketee, G., Fitch, K.E., 2008. Family burden of compulsive hoarding: results of an internet survey. Behav. Res. Ther. 46, 334–344. Vikas, A., Avasthi, A., Sharan, P., 2011. Psychosocial impact of obsessive-compulsive disorder on patients and their caregivers: a comparative study with depressive disorder. Int. J. Soc. Psychiatry 57, 45–56. Ware , J.E., Sherbourne, C.D., 1992. The MOS 36-item short-form health survey (SF36): I. Conceptual framework and item selection. Med. Care 30, 473–483. Whitney, J., Eisler, I., 2005. Theoretical and empirical models around caring for someone with an eating disorder: the reorganization of family life and interpersonal maintenance factors. J. Ment. Health 14, 575–585. Wilbram, M., Kellett, S., Beail, N., 2008. Compulsive hoarding: a qualitative investigation of partner and carer perspectives. Br. J. Clin. Psychol. 47, 59–73.