Long-Term Improvement in Activities

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Research Paper

British Journal of Occupational Therapy


2017, Vol. 80(7) 417–422

Long-term improvement in activities ! The Author(s) 2017


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of daily living in women with systemic DOI: 10.1177/0308022617698167
journals.sagepub.com/home/bjot
sclerosis attending occupational therapy

Elisabetta Zanatta1, Francesca Rodeghiero2, Erika Pigatto3, Paola Galozzi4,


Pamela Polito1, Maria Favaro5, Leonardo Punzi6 and Franco Cozzi7

Abstract
Introduction: Systemic sclerosis often affects hand function, leading to severe disability in many subjects. There is little data
available on the effects of occupational therapy in systemic sclerosis in current literature. The aim of our study was therefore to
evaluate the effects of a cycle of occupational therapy on performing activities of daily living in a group of women with systemic
sclerosis.
Method: Twenty women with systemic sclerosis were included in the study: 10 followed a cycle of occupational therapy; 10 were
enrolled as controls. An occupational therapy cycle consisted of six meetings of 90 minutes each over a 3-week period. All women
were evaluated by the Health Assessment Questionnaire and Evaluation of Daily Activity Questionnaire at baseline and after 24
weeks. The use of devices and alternative strategies was also assessed.
Results: We observed a significant reduction in the Health Assessment Questionnaire and Evaluation of Daily Activity Questionnaire
scores in occupational therapy subjects after 6 months compared to controls. There was also evidence of significant improvement
in four dimensions of the Evaluation of Daily Activity Questionnaire: eating; indoor mobility; outdoor mobility; and communication.
The number of devices in the occupational therapy group increased significantly.
Conclusion: Our findings suggest a relevant role for occupational therapy in improving activities of daily living in women with
systemic sclerosis. The use of strategies learned during occupational therapy sessions allows for long-lasting beneficial effects.

Keywords
Systemic sclerosis, ADL, activities of daily living, occupational therapy

Received: 4 July 2016; accepted: 9 February 2017

Introduction flexor tendons, resulting in a progressive ankylosis of the


Many systemic rheumatic diseases cause a high level of fingers also known as ‘‘claw hand’’ (Cuomo et al., 2009;
disability, which compromises many activities of daily Erre et al., 2008). Moreover, subjects with SSc often pre-
living (ADL). Occupational therapy can be very helpful, sent very painful digital ulcers, caused by chronic and
providing affected subjects with personalized strategies to
carry out ADL and have a better quality of life (Hand
et al., 2011; Yasuda and Hanten, 1985). Occupational 1
Resident, Rheumatology Unit, Department of Medicine – DIMED, University
therapy plays a well-defined role in the global therapeutic of Padova, Italy
program of those affected by rheumatoid arthritis (RA) 2
Occupational Therapist, ‘Domus Salutis’ Rehabilitation Clinic, Brescia, Italy
3
and the effectiveness of multidisciplinary team care in PhD Fellow in Clinical and Experimental Science, Department of Medicine
this chronic, disabling disease has been consistently – DIMED, University of Padova, Italy
4
Post-doc Researcher, Rheumatology Unit, Department of Medicine –
demonstrated (Viliet Vilietland, 2004).
DIMED, University of Padova, Italy
Systemic sclerosis (SSc) is an autoimmune disorder of 5
Outpatient Clinician, Department of Medicine – DIMED, University of
the connective tissue, characterized by diffuse microangio- Padova, Italy
6
pathy and immune dysregulation which leads to an abnor- Professor, Rheumatology Unit, Department of Medicine – DIMED,
mal fibroblast function and increased extracellular matrix University of Padova, Italy
7
Associated Professor, Rheumatology Unit, Department of Medicine –
production, with a diffuse fibrosis of skin and internal
DIMED, University of Padova, Italy
organs (lung, kidney, and heart) (Gabrielli et al., 2009).
Corresponding author:
The hand is seriously affected even in the early stages of Prof. Franco Cozzi, Rheumatology Unit, Department of Medicine – DIMED,
SSc. The fibrosis of the hand causes a retraction of both via Giustiniani 2, 35128 Padova, Italy.
the cutaneous and subcutaneous tissues as well as the Email: franco.cozzi@unipd.it
418 British Journal of Occupational Therapy 80(7)

recurring ischemia, that further hamper hand mobility and Padova, 27 agreed to participate in the study. All fulfilled
function. Digital ulcers have a severe negative impact on a the classification criteria for SSc proposed by the
subject’s ability to work and this often leads to anxiety and European League against Rheumatism (EULAR) and
depression (Mouthon et al., 2010). The hand mobility and the American College of Rheumatology (ACR) (Van den
the ADL do not change significantly during the first year Hoogen et al., 2013). Four were excluded because of
of disease, whereas digital flexion/extension and supin- infected digital ulcers and three for severe lung/heart dys-
ation are very impaired in the latter stages, with progres- function (NYHA class III–IV). The remaining 20 were
sive difficulties in ADL (Sandqvist et al., 2009). The main allocated into two groups: 10 in the intervention group
impediment relating to reduced articular range is the abil- (occupational therapy group) and 10 in the control
ity to grab big objects, for example a glass (Poole, 1994). group. The study design is reported in Figure 1.
These limitations highlight the importance of developing The mean age of the subjects was 50.8  9.6 years and
rehabilitation programs to support the articular range mean disease duration was 12.9  8.1 years. Seven women
mobility, prevent contractures, and promote the best presented the limited cutaneous form of SSc (affecting the
grasp patterns (Sandqvist et al., 2004). The ability to face and the extremities) and 13 presented the diffuse form
achieve different ADL is strictly related to hand function. (with proximal cutaneous sclerosis and trunk fibrosis)
Sandqvist et al. (2008) underlined that 50% of subjects (LeRoy et al., 1988). All had positive antinuclear antibo-
with SSc were restricted in their working ability. The dies (ANA), with specific anti-topoisomerase I antibodies
most arduous activities included doing chores, shopping, (Scl70) and anti-centromere antibodies (ACA) in eight and
cooking, walking, and sports activities (Sandqvist five cases, respectively. The demographic and clinical char-
et al., 2005). A considerable worsening of work disability acteristics of these women are summarized in Table 1.
was noted 3 years after disease onset (Sandqvist et al., All women signed a written consent form and none had
2015). Subjects with SSc and work disability also experi- participated in an occupational therapy program prior to
ence less overall satisfaction as well as more physical exer- this. The study was conducted in compliance with the
tion and strain (Bérezné et al., 2011; Sandqvist et al., Good Clinical Practices protocol and Declaration of
2010). Helsinki principles. A formal approval from our ethical
Despite similarities with patients suffering from RA, committee was not required for this study.
there is little evidence of the actual effectiveness of occu-
pational therapy in SSc subjects. Schouffoer et al. (2011)
Occupational therapy
reported that a 12-week multidisciplinary team care pro-
gram leads to a significant improvement in the Health A cycle of occupational therapy consisted of a preliminary
Assessment Questionnaire (HAQ), grip strength, and limi- informative meeting and six sessions of 90 minutes each
tations in daily activities. A systematic review on the over a 3-week period. A rheumatologist sat in on the ini-
effectiveness of non-pharmacological therapies in SSc tial meeting explain to participants the importance of a
included studies about interventions focused on one symp- multidisciplinary care program for improving disability
tom or one characteristic (such as hand function or mouth due to hand involvement in SSc. In the following sessions,
opening), but not on the ability to perform daily activities an occupational therapist illustrated the basics of occupa-
(Willems et al., 2015). A recent paper suggested that occu- tional therapy and the movements that are less damaging
pational therapy integrated with a self-administered to the hands. The more difficult activities were recorded in
stretching program may be effective to improve and main- order to elaborate different strategies or explore new
tain hand function in SSc (Stefanantoni et al., 2016). devices to carry them out. Each session was based on a
We decided to perform a controlled study to assess the
efficacy of an occupational therapy program on disability
and quality of life in a group of SSc women with severe
hand impairments. We enrolled in this study our Day Eligible patients n=36
Patients not interested n=4
Hospital Unit subjects who received monthly infusions Too busy n=2
of Iloprost (a prostacyclin analogous), the only effective Hospital too far away n=3

treatment for digital ulcers (Wigley et al., 1992, 1994). The Screening n=27
effects of occupational therapy were evaluated after 6 Patients excluded n=7
Infected digital ulcers n=4
months by determining whether the women continued to Lung/Heart dysfunction n=3
use strategies and devices, thus obtaining long-term Included n=20
benefits.

Allocated to Day Hospital n=10 Allocated to Day Hospital and


occupational therapy n=10
Method
Subjects
24-week assessment n=20 (no lost to follow-up)
Among 36 women affected by SSc and receiving monthly
intravenous administrations of Iloprost for digital ulcers Figure 1. Flow-chart of women with systemic sclerosis included in
at the Rheumatology Unit of the University-Hospital of the study.
Zanatta et al. 419

Table 1. Demographic and clinical characteristics of the 20 Table 2. HAQ and EDAQ scores in the occupational therapy group
women with SSc. and in the control group at baseline (T0).
Occupational Occupational
therapy group Control group therapy group Control group
(mean  SD) (mean  SD)
N 10 10
Age (years) 54.1  7.4 47.9  12.7 HAQ 14.9  11.3 13.3  13.1
SSc duration (years) 11.3  6.7 13.9  5.9 EDAQ total 66.7  42.9 72.4  73.0
ANA / Anti-Scl70 / ACA 10/5/2 10/3/3 Eating/drinking 10.8  5.9 8.8  8.6
Diffuse/limited form 7/3 6/4 Moving/transfer 0.8  1.1 1.3  1.8
mRSS (mean  SD) 13.9  6.9 12.2  11 Personal care 3.9  2.8 6.1  6.9
Digital ulcers 10 9 Getting dressed 6.4  4.0 8.8  7.9
ILD 6 4 Bathing/showering 7.7  8.0 9.2  9.9
PAH 1 2 Cleaning the house 5.9  5.0 5.8  5.4
G-I involvement 10 9 Cooking 6.7  6.3 7.6  8.8
Cardiac involvement 3 2 Moving indoors 3.6  2.8 4.2  5.6
Moving outdoors 9.2  3.7 9.2  8.6
SSc: systemic sclerosis; mRSS: modified Rodnan skin score; ILD: inter-
Clothes care 9.1  5.9 8.5  8.5
stitial lung disease; PAH: pulmonary arterial hypertension; G-I: gastro-
intestinal involvement; ANA: antinuclear antibodies; anti-Scl70: anti- Communication 1.9  1.9 2.5  2.6
topoisomerase I antibodies; ACA: anti-centromere antibodies HAQ: Health Assessment Questionnaire; EDAQ: Evaluation of Daily
Activity Questionnaire

specific topic of the program: cooking; getting dressed;


personal care; cleaning the house; and leisure time.
Statistical analysis
The control group only participated in the preliminary The subjects’ characteristics were described using mean
informative meeting. Women in this group were offered values and standard deviation for continuous data and
the opportunity to participate in an occupational therapy as percentages for qualitative data. Results are reported
program at the end of the study. as mean  standard deviation.
HAQ and EDAQ scores were analyzed by Wilcoxon’s
non-parametric statistic tests. The variations T0–T1 within
Outcome assessment each group were assessed by the ‘signed-ranks test,’ while
All women were evaluated with the HAQ and Evaluation the comparison between the occupational therapy and the
of Daily Activity Questionnaire (EDAQ), administered at control group at T0 and in the time variation of each
baseline (T0) and after 24 weeks (T1). The use of devices parameter was investigated by the ‘two-sample tank test.’
and alternative strategies was also assessed at the same
time points.
Results
The HAQ score is a good measurement of the func-
tional impairment, as previously confirmed in SSc subjects The HAQ and the EDAQ scores at baseline are reported
(Poole and Steen, 1991). The HAQ assesses disability and in Table 2. No significant differences were observed
highlights any changes occurring in these subjects between the occupational therapy group and controls.
(Khanna et al., 2005; Merkel et al., 2002). The HAQ Changes in the HAQ and EDAQ scores six months after
score also shows a good correlation with the Cochin the cycle of occupational therapy are summarized in
Hand Function Scale, a functional disability questionnaire Table 3. Subjects in the occupational therapy group
about daily activities, validated both in RA (Poiraudeau showed a lower HAQ score, though this was not statistic-
et al., 2000) and in SSc (Brower and Poole, 2004). ally significant. The total score and the three dimensions of
The EDAQ is a detailed assessment of self-reported the EDAQ (eating, moving indoors, and moving out-
proficiency in daily activities performed by subjects doors) significantly decreased (p < 0.05). In the control
with RA (Nordenskiold et al., 1996). Its reliability group, only a minimal improvement of the HAQ and
and validity have been recently confirmed (Hammond EDAQ scores was observed at T1, with no statistical sig-
et al., 2015). nificance in comparison to T0. Comparing the two groups
The EDAQ consists of 102 items relating to daily activ- of women, both the HAQ and the EDAQ scores signifi-
ities, divided into 11 dimensions: eating; moving and cantly improved in the occupational therapy group
transfer; personal care; dressing; bathing; cleaning the (p < 0.05). Four dimensions of the EDAQ (eating,
house; cooking; moving indoors; moving outdoors; clothes indoor mobility, outdoor mobility, and communication)
care; communication. The women from the occupational significantly decreased (p < 0.05).
therapy group provided an overall evaluation of the occu- Concerning the use of devices, four women in the occu-
pational therapy sessions, giving a score from 0 to 10 on pational therapy group and three controls were already
appreciation for the initiative, the session program, and using ‘assistive devices’ in daily activities at baseline.
usefulness in daily life. After 6 months, nine women in the occupational therapy
420 British Journal of Occupational Therapy 80(7)

Table 3. HAQ and EDAQ scores in the occupational therapy group and in controls at baseline (T0) and after 6 months (T1).
Occupational therapy group Control group

T0 T1 T0 T1
(mean  SD) (mean  SD) (mean  SD) (mean  SD) p

HAQ 14.9  11.3 11.8  7.1 13.3  13.1 13.9  13.5 <0.05
EDAQ total 66.7  42.9 50.3  33.5* 72.4  73.0 71.5  72.3 <0.05
Eating 10.8  5.9 6.4  5.2* 8.8  8.6 9.7  7.8 <0.05
Moving/transfer 0.8  1.1 0.6  0.89 1.3  1.8 1.5  1.9
Personal care 3.9  2.8 4.9  2.7 6.1  6.9 3.9  3.3
Dressing 6.4  4 4.9  4.4 8.8  7.9 8.3  7.7
Bathing/showering 7.7  8 6.1  6.6 9.2  10.9 9.3  10.9
Cleaning the house 5.9  5 4.7  3.7 5.8  5.4 5.2  5.0
Cooking 6.7  6.3 6.5  6.3 7.6  8.8 8.6  9.8
Moving indoors 3.6  2.8 1.6  1.6* 4.2  5.6 4.3  6.0 <0.05
Moving outdoors 9.2  3.7 5.7  3.5* 9.2  8.6 9.5  8.8 <0.05
Clothes care 9.1  5.9 8.2  5.8 8.5  8.5 8.8  8.5
Communication 1.9  1.9 1.7  1.3 2.5  2.6 3.5  2.6 <0.05

HAQ: Health Assessment Questionnaire; EDAQ: Evaluation of Daily Activity Questionnaire


* ¼ p-value < 0.05; comparison between T0 and T1 means.
p ¼ comparison of the variations between the occupational therapy group and the control group.

group and only four controls were using devices or alter- some strategies and assistive devices to reduce difficulties
native strategies. The number of devices or alternative in many areas of daily living. The effectiveness of a multi-
strategies increased from 35 to 114 in the occupational disciplinary program has been well demonstrated in
therapy group and from 28 to 34 in the control group, rheumatoid arthritis, in addition to pharmacological and
with a significant difference between the two groups surgical treatments (Viliet Vilietland, 2004). The hand
(p < 0.05). function is often seriously compromised in this disease,
The attendance rate in the occupational therapy group with a high level of disability perceived by the affected
was an estimated 96%. At the end of the sessions’ cycle, subjects (Poiraudeau et al., 2000). Only a few studies
the involved subjects seemed to appreciate the initiative have evaluated the effectiveness of a multidisciplinary
(score 8.5  1.2), the schedule of the sessions (score team care program in SSc, even though it has been well
8.9  0.9), and the usefulness in daily life (score 8.0  0.7). demonstrated that the disability caused by hand involve-
ment is as severe as that observed in subjects with RA with
a comparable disease duration. A pilot study performed
Discussion and implications
on six women with SSc demonstrated the positive effects of
SSc is a chronic autoimmune disease characterized by pro- an educational program on subjective symptoms, disabil-
gressive disability and reduced quality of life. Among the ity, and psychological function (Samuelson and Ahlmén,
clinical features that are deleterious to ADL and quality of 2000). Schouffoer and colleagues observed a significantly
life, hand involvement is the most common: cutaneous, greater improvement in the grip strength and the HAQ
subcutaneous, and tendon fibrosis as well as the painful score in 28 SSc subjects after a 12-week multidisciplinary
digital ulcers and the flexion contracture of the fingers care program, including individual treatments, group exer-
cause deformities that lead to a severe disability and limi- cises, and group education (Schouffoer et al., 2011).
tation in ADL (Hudson et al., 2009). Sandqvist and col- The SSc prevalence is higher in women, who usually do
leagues previously investigated hand involvement in SSc, housework. This is the reason why, for the purpose of this
confirming dexterity limitations in daily activities through study, we enrolled a group of 20 women with SSc char-
the HAMIS (Hand mobility in Scleroderma) test acterized by a severe hand involvement with fibrotic
(Sandqvist and Eklund, 2000). Difficulties in ADL can retraction and digital ulcers.
be ascribed not only to gripping abilities but also to We chose HAQ and EDAQ as evaluation parameters
Raynaud’s phenomenon as well as digital ulcers as we believe they are the most accurate instruments for
(Sandqvist et al., 2004). detecting and following global disability in SSc and RA
The functional impairment of the hand is a major com- patients. Our results showed that SSc women in both the
ponent of global disability in SSc and therefore should be control group and the intervention group had comparable
systematically evaluated. In a group of 50 SSc subjects, the ADL affection levels at baseline.
level of disability explained 75% of the variance of the We observed a significant improvement of HAQ scores
HAQ (Rannou et al., 2007). in women from the occupational therapy group compared
The severe limitation in ADL highlights the importance to controls. Similar results were observed for the EDAQ
of rehabilitative programs for SSc subjects, providing total score and some of its items: eating; communication;
Zanatta et al. 421

moving indoors; and moving outdoors. Eating includes, for Declaration of conflicting interests
example, using cutlery, slicing bread or cheese; communica- The authors confirm that there is no conflict of interest.
tion includes using a computer/phone, holding a book,
taking money from a wallet. These are all daily activities in Funding
which hand function and grip, as well as the various strate-
This research received no specific grant support from any funding
gies and devices employed during the occupational therapy agency in the public, commercial, or not-for-profit sectors.
sessions, are called into action. So it is not unexpected that
these items would show the most significant improvement.
Likewise, indoor and outdoor mobility includes activities
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