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Self-rated health and quality of life in adults attending regional disability services in Ireland
Disability and Health Journal 2 (2009) 95e103 www.disabilityandhealthjnl.com
Self-rated health and quality of life in adults attending regional disability services in Ireland Ma´irı´n C. Boland, M.D., F.F.P.H.M.I., M.R.C.P.I.a,b,*, Leslie Daly, Ph.D., F.F.P.H.a, Anthony Staines, Ph.D., M.Sc., M.B., F.F.P.H.M.I.c a
UCD School of Public Health and Population Science, University College Dublin, Dublin 2, Ireland b Department of Public Health, Health Service Executive, Eastern Region, Dublin, Ireland c Department of Nursing, Dublin City University, Dublin, Ireland
Abstract Background: There is limited background information on self-rated health in people with disability in Ireland. This paper examines self-rated health scores and dimensions of functioning in people attending disability services and compares scores to the general population in Ireland, which has not been done before. Methods: Face-to-face interviews were carried out with 247 adults with intellectual disability and 180 with physical or sensory disability attending regional residential, day activity, or training disability centres in the East Coast Area of Ireland. EuroQol ED-5Q was used to assess five dimensions of functioning and quality of life, supplemented by questions taken from the national population study on general health, mental health, and quality of life. Results: Clients with intellectual disability scored their quality of life significantly higher than the adult general population. They scored their mental health significantly lower compared with clients with physical/sensory disability. Compared to clients with intellectual disability, and to the general population, clients with physical or sensory disability scored their quality of life significantly lower. They had more problems in all EuroQol ED-5Q dimensions (mobility; self-care; being able to carry out one’s usual activities; pain; and anxiety) than both the general population and clients with intellectual disability. Conclusion: These results give an insight into self-rated health and quality of life of regional disability services attendees. Findings provide an indicator of health needs and provide a baseline to measure the impact of interventions. Further elucidation of the relationship between functional impairment and quality of life in those with disability is needed. Factors affecting self-rating of health in people with intellectual disabilities need further exploration. Ó 2009 Elsevier Inc. All rights reserved. Keywords: Self-rated health; Quality of life; Functioning; Disability services
Self-rated health and quality of life measures are increasingly being recognized as a valid indicator of a person’s health status. Studies show that self-rated, health-related quality of life consistently predicts adverse health outcomes [1] and can be an independent predictor of mortality in older people [2]. It is vital that self-rated health and quality of life be measured in people with disability. In Ireland, the National Disability Strategy provides a framework of supports for people with disability [3] and the National Health Strategy [4] seeks to help people with disability to achieve their full potential, aiming for ‘‘better health for everyone.’’ The Irish population-based longitudinal survey [5] records self-rated * Corresponding author: Stewarts Sports Centre, The Mezzanine Floor, Waterstown Avenue, Palmerstown 20. Fax: 00-353-1-6421785. E-mail address: [email protected] (M.C. Boland). This study was funded through the Cardiovascular Strategy of the Health Services Executive, East Coast Area. 1936-6574/09/$ e see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.dhjo.2008.11.005
health and quality of life, but does not include people with disability who are in residential centers, as sampling is carried out among private homes. Thus, this study extends our knowledge about those with disability in Ireland. Measuring quality of life is complex in people with disability. People with disability may construct health, or the self-rating process, differently than those with no disability [6]. Indeed, people with disability may consider health as being able to function well, rather than the absence of illness [7]. Previous research shows that determinants of quality of life in people with disability include physical health and functional well-being, psychological well-being, social relationships and environment, and having a disability [7-10]. This study used the EuroQol instrument [11]. Healthrelated quality of life, measured by EuroQol, strongly correlates with the parameters of vitality, general health and mental health measured by the SF-36 method and the OPCS disability scores [12-15].
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We set out to compare self-rated quality of life, mental health, general health, and functioning between people with intellectual disabilities and those with physical/sensory disabilities attending regional disability services. We wanted to compare results to Irish population indicators.
Background There are 12 main organizations providing day, residential, and respite disability services to those with intellectual disability (ID) in the East Coast Area Health Board region of Ireland. This area covers South Dublin and Wicklow and has a population of approximately 325,000. Day services include day activation centers, special schools, resource centers, training, and sheltered or supported work/employment centers. Services are provided to over 900 clients with ID, in 60 separate centers, with some clients using both day and residential services. At the time of survey, of clients registered on the National Intellectual Disability Database (NIDD) in the Eastern Region [16], 54.7% attended day services and 30.5% attended 5- or 7-day residential services. There are nine main organizations in the region providing services for over 500 clients with physical/sensory disability (P/SD), with a total of 11 separate centers. Of clients on the National Physical/Sensory Disability Database, 51.3% attended day services, 10.5% used planned respite services, and 3.2% availed of residential services.
Methods Aims We undertook this study of self-rated health as part of a larger health promotion needs assessment to provide information to inform and direct policy in people attending regional disability services. This is the first large-scale triangulated study of people attending disability organizations in Ireland.
Recruitment and participants All 21 regional disability organizations (71 centers), described earlier, formed the sampling frame. National and support organizations were excluded. Clients under 15 years old were excluded. Each center was invited to participate. Each participating center completed a master list of clients attending, type of disability, and type of service attended. Clients were stratified by type of disability (intellectual or physical/sensory). Clients with ID at the moderate, severe, or profound level were placed into the ID category, even if they also had P/SD, as per Irish national disability databases [17]. Within each disability group (ID or P/SD), clients were stratified by care-type (residential, respite, or day care). Our sample size calculations were based on getting precision for various estimates. A representative random sample of 450 clients permitted estimates of prevalences ranging from 20% to 80% within a precision of 3.8% based on a 95% confidence interval [18]. Methods of data collection This study consisted of interviewer-directed questionnaires for clients. Two experienced interviewers were trained in consultation with people with disability [19] and interviewed 427 clients or advocates at the disability centers. Adapted methods were used to maximize participation. For those with P/SD this included a sign language interpreter and computer-aided devices. In clients with ID, the key worker acted as advocate when required: in some cases (51, 20.6%) in a minor way to support response, but in 71 (28.8%) of cases, particularly in those 46 clients with severe/profound ID, to provide proxy results. The surveys were piloted with six clients with P/SD and six clients with ID. Subsequent modifications were made to the questionnaires. Pictograms were understandable to clients during piloting. Measures of data collection
Planning the research An advisory group consisted of a person with a disability, a nutritionist, a health promotion director, and a services manager. The project steering group consisted of a statistician, an epidemiologist, and a sociologist. Ethical approval was obtained from the Faculty of Public Health Research Ethics Committee, Royal College of Physicians of Ireland, and from the Hospitaller Order of St. John of God, Research Ethics Committee. An introductory letter to organization CEOs and managers invited each center to participate in the research. Aims and methods were discussed with service providers (center managers) at a workshop, and the lead researcher (M.C.B.) visited all centers. A full description of the inclusive methodology has been reported [17].
The interviewer-directed questionnaire contained elements from the following existing instruments: The SLAN questionnaire, which has been used to survey health-related behavior in Irish people [5]. Clients were asked to rate their own general health, mental health, and quality of life on a Likert scale. For clients with ID, questions were rephrased and a pictogram was used (Fig. 1). EuroQol EQ-5D [11], a generic measure that describes function and quality of life in five dimensions: mobility, self-care, usual activities, pain or discomfort, and anxiety or depression. EuroQol was modified for clients with ID to understand (Fig. 2), which must be taken into account in comparisons.
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Q1. How do you feel today? (General Health) Q2. How do you cope or manage with things that happen every day? (Mental health) Q3. Do you enjoy life? (Quality of Life)
Really well
Well
Fair
Not very well
Figure 1. Adaption of questions on health and quality of life for clients with intellectual disability and pictogram face sequence, if needed.
Clients’ level of ID was recorded, as was the presence of other disability. Service providers gave an approximation of client’s level of ID where no recorded ID level was available. Data analysis Data were analyzed using Epi-Info statistical package (version 6) (Dean AG, 1996) and SPSS statistical package version 11 (SPSS Inc., 2002). The c2 test was used to compare proportions, and the t-test to compare means. Logistic regression analyses examined disability group (ID or P/SD) as a predictor of general health, mental health, and quality of life both overall (crude) and adjusted for age and sex. Proportions were compared with results from the national population survey, and because the sample size in this study was relatively small, detection of an interaction effect was considered unlikely.
Self-rated health and quality of life Clients with ID rated their quality of life significantly higher, and their mental health significantly lower than did clients with P/SD, after adjusting for age and sex (Table 4). Clients with ID rated their quality of life higher than respondents to the Irish population survey (c2 5 6.25, p ! .05). Clients with P/SD, compared with the Irish population, rated their quality of life significantly lower (c2 5 9.24, p ! .01). There was no significant difference in general health self-reports between clients with ID, P/SD, and the general population. Among those with ID, clients with mild or moderate ID rated their general health and mental health significantly higher compared with those with severe/profound disability (Table 5). Younger clients with ID reported better general health, with 46.2% (90 of 195) of under 45-year-olds reporting very good health compared with 29.4% (15 of 51) of clients over 45 (c2 5 4.6, p ! .05).
Results Q. Here are some questions about how you are TODAY.
Of the 21 organizations, 18 (81.8%) participated in the study. The total sample achieved was 427 (94.8% response rate). Demographics Of the clients reported, 247 (57.8%) had primarily an ID and 180 (42.2%) had primarily a P/SD, because of sampling methodology (Table 1). Many had a mixed disability. Tables 2 and 3 show the causes of disability (when available) for clients with ID and P/SD, respectively. The mean age of the clients with ID was 35.5 years (SD 12, range 15e65). Those with P/SD were significantly older, with a mean age of 61.9 years (SD 19.2, range 15e98) (t 5 17.5, p ! .01). Thus, the sample with P/SD was older than the adult Irish population (the median age of the population in Ireland over 15 years old is 39 years). There were similar numbers of males (120, 48.6%) and females (127, 51.4%) with ID. There were more females (110, 61.1%) than males (70, 38.9%) with P/SD. There was no age difference between the genders.
a) Can you walk today? 1. I can walk around with no problem 2. I have some problems in walking about 3. I use a wheelchair 4. I have to stay in bed b) How are you at washing and dressing yourself today? 1. I can wash and dress myself with no problem 2. I have some problems with washing and dressing myself 3. I can’t wash and dress myself c) Usual Activities (e.g. work, sport, family, leisure) 1. I have no problems doing my usual activities 2. I have some problems doing my usual activities 3. I have a lot of problems doing my usual activities d) Have you any pain or discomfort today? 1. I have no pain 2. I have some pain 3. I have a lot of pain e) Are you worried or anxious today? 1. I’m not worried 2. I’m a bit worried 3. I’m really worried Figure 2. EuroQol ED-5Q modified for clients with intellectual disability
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Table 1 Description of Disability and Categorisation of Respondents Disability category Description of disability(s)
Number of clients Percent within category Percent within total clients
Intellectual disability Intellectual disability alone 134 Intellectual* and sensory disability (54) Intellectual and sensory disability: deaf and blind, speech 4 Intellectual and visual impairment alone 11 Intellectual and hearing impairment alone 8 Intellectual and speech impairment alone 31 Intellectual* and physical disability (59) Intellectual, physical, deaf, blind, speech 5 Intellectual, physical, speech 15 Intellectual, physical, blind, speech 2 Intellectual, physical alone 37 Category subtotal 247 Physical/sensory disability Physical disability alone 114 Physical and other disability (66) Physical, sensory and intellectual (mild) 6 Physical and intellectual (mild) 9 Physical and sensory 41 Sensory disability alone 8 Sensory and intellectual (mild) 2 Category subtotal 180 Table total 427
54.2
31.4
1.6 4.5 3.2 12.7
0.9 2.5 1.7 7.3
2.0 6.0 0.8 15.0 100.0
1.2 3.5 0.4 8.6 57.8
63.4
26.6
3.3 5.0 22.8 4.4 1.1 100.0
1.5 2.1 9.6 1.9 0.5 42.2 100.0
* Moderate, severe, or profound intellectual disability.
Among those with P/SD, males reported better general health than females, with 91.4% (64 of 70) males reporting ‘‘very good or good’’ health compared with 77.3% (85 of 110) of females (c2 5 6.0, p ! .01). Age was not associated with self-rated health or quality of life in those with P/SD. The presence of the disability since birth was not associated with self-rated quality of life. The 163 clients with P/SD but without ID reported better mental health compared with those without ID (c2 5 4.7, p ! .01), with 96.9% (158) reporting ‘‘very good or good’’ mental health. Clients with specific disabilities were compared with the remainder of the disability group. Numbers were small and no significant results were reached. ‘‘Good/very good’’ general health was reported by fewer clients with arthritis (79.3%) and multiple sclerosis (72.7%) (nonsignificant [NS]). ‘‘Good/very good’’ quality of life was reported by more clients with Down syndrome (95.2%), more clients with cerebral palsy without ID (85.7%); and more clients with multiple sclerosis (90.9%) (all NS). A higher proportion of clients with deafness reported ‘‘good/very good’’ general health (100%) and quality of life (100%) (both NS). Results of EuroQoL: ED-5Q Table 6 compares self-rated EuroQol dimensions in clients with disability and the Irish population. Clients with ID reported more problems with mobility and self-care than the general population, but less anxiety and less pain. Compared to clients with ID, clients with P/SD had significantly more problems in mobility, self-care, and
being able to carry out one’s usual activities. They also reported significantly more pain and anxiety. Also, 31.1% (56) of clients with P/SD reported moderate pain and 10.6% (19) reported extreme pain. More women than men with P/SD reported pain (c2 5 12.7, p ! .01). There was no gender difference in terms of anxiety reporting. Clients with P/SD reported more problems with all dimensions than the general population. Certain disability subgroups reported higher wheelchair use: those with multiple sclerosis (c2 5 29.3, p ! .01), spina bifida (c2 5 5.8, p ! .05), and cerebral palsy (c2 5 5.6, p ! .05). Those with multiple sclerosis reported more problems in self-care (c2 5 6.5, p ! .01). Table 2 Diagnosis Provided for Clients with Intellectual Disability (n 5 247) Diagnosis/cause of intellectual disability
No.
%
Down syndrome Autism or Asperger’s syndrome Cerebral palsy Congenital rubella syndrome Other neurological diagnosis* or behavioral Post head injury Other congenital syndromey Total with any diagnosis Total with no diagnosis
42 25 11 10 6 5 4 103 144
17.0 10.1 4.5 4.0 2.4 2.0 1.6 41.7 58.3
* Other neurological/behavioral diagnoses included hydrocephalus (2), alcohol-induced memory loss, psychiatric disorder/depression, and attention-deficit disorder. y Clients with other congenital syndromes had Rubenstein-Taybi syndrome, Angelman’s syndrome, and other unidentified genetic syndromes.
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Table 3 Description of Cause of Disability for Clients with Physical/Sensory Disability (n 5 180) Description of physical/sensory disability
No.
%
Description of physical/sensory disability
No.
%
Stroke Arthritis (osteoarthritis and rheumatoid) Multiple sclerosis Cerebral palsy Injuryy Spina bifida Parkinson’s disease Deafness (6 congenital, 1 post-measles, 1 with Usher’s syndrome)
37 26 22 21 13 11 8 8
20.6 14.4 12.2 11.7 7.2 6.1 4.4 4.4
Head injury Other neurological disorders* Other circulatory disease** Brain tumor Muscular dystrophy Other musculoskeletal diseasez Blind, diabetic retinopathy Otherx
8 8 5 4 3 3 1 2
4.4 4.4 2.7 2.2 1.7 1.7 0.6 1.1
* Other neurological disorders included polio, Friedrich’s ataxia, nonspecified ataxia, peripheral neuropathy, cerebellar ataxia, dementia, and a nonspecified leg problem. ** Circulatory disorders other than CVA included heart/lung disease post breast cancer, nonspecified cancer causing heart-lung disorder, phlebitis, angina, irregular heartbeat, and peripheral vascular disease. y Injury clients comprised four with limb injury, three with limb loss, and six with other injury such as spinal cord. z Other musculoskeletal disease included Paget’s disease. x Other included gastrointestinal disorder and age-related infirmity.
‘‘Very good/good’’ self-rated quality of life was significantly associated with having no anxiety, in both clients with ID (c2 5 22.3, p ! .01) and P/SD (c2 5 7.9, p ! .01). Table 7 examines the association between level of ID and self-rated health, quality of life and EuroQol ED-5Q dimensions. Those with mild or moderate ID had significantly fewer problems with mobility, self-care, and usual activities, compared with those with severe/profound disability.
is consistent with other reports; although in our study ‘‘very good/good’’ quality of life levels in those with P/ SD was particularly high compared with 54% found in other studies [20]. The substantially higher quality of life reported by those with ID compared with those with P/SD is an interesting finding. Our results are consistent with other research [21] which detected no reduction in quality of life score in those with ID compared with the general population, but reported lower scores for those with chronic disease.
Discussion This study found that clients with ID attending disability services rate their general health and quality of life highly. Those with physical disability reported poorer self-rated health and, as expected, had more functional limitations. Our finding of high quality of life in those with disability
Self-rated quality of life and health in people with an intellectual disability The validity of self-rated scales by people with intellectual disabilities has been debated [22]. We were alert to the
Table 4 Disability as a Predictor of Self-rated Health, Adjusted for Age and Sex General health ‘very good or good’ %
Unadjusted OR (95% CI)
Adjusted OR y (95% CI)
Mental health ‘very good or good’ %
Unadjusted OR (95% CI)
Adjusted OR (95% CI)
Quality of life ‘very good or good’ y
%
Unadjusted OR (95% CI)
Adjusted OR (95% CI)
y
P/SD ID
82.2 89.1
1.0 1.76 (1.01e3.06)*
e 1.67 (0.82e3.35)
95.6 70.0
1.0 0.11 (0.05e0.23)**
e 0.10** (0.04e0.24)
77.2 91.1
e 3.02 (1.72e5.3)*
e 2.26 (1.09e4.67)**
Age (years) !40 40e59
88.8 85.0
Male Female
90.0 83.5
1.0 0.82 (0.48e1.4) 4.38 (1.9e10.1)* 1.0 0.60 (0.39e0.92)*
e 0.52 (0.29e0.92) 0.89 (0.32e2.49) e 0.71 (0.42e1.18)
90.8 87.4
84.1
e 0.95 (0.40e2.2) 0.81 (0.37e1.74) e 0.59 (0.37e1.7)
77.5 74.0
60þ
1.0 0.71 (0.37e1.40) 0.67 (0.34e1.32) 1.0 0.56 (0.31e1.01)
e 0.70 (0.34e1.40) 0.30 (0.16e0.59)* e 0.85 (0.49e1.47)
e 0.90 (0.42e1.9) 0.56 (0.24e1.3) e 0.98 (0.55e1.73)
Irish adultsz
86.6
y
93.8 82.1 79.5
75.2 86.8 84.7 85.4
Adjusted for age, sex, and disability group * p value !.05. ** p value !.01. z SLAN survey (SLAN, 2003) 5992 respondents. No comparative question was asked about mental health.
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Table 5 Association Between Level of Intellectual Disability (ID) and Elements of Health-Related Quality of Life Item reported as ‘good’ or ‘very good’
Item General health Mental health Quality of life
Mild/moderate ID (n 5 192)
Severe/profound ID (n 5 46)
Statistical tests
No. 175 142 179
No. 37 22 39
c2 4.4 8.3 3.64
% 91.1 84.0 93.2
possibility of acquiescence [23], which was reduced by methodological means [17]. Some researchers regard quality of life scales as a valuable tool in identifying and comparing experiences among people with ID [21,24], Some think quality of life must be self-rated by those with ID as it is a subjective experience only [25]. Quality of life studies in people with ID have found assessments of objective life conditions and personal satisfaction to be distinct [26]. However, several observers consider objective indicators to be preferable to subjective ones in measuring personal outcomes in those with ID [27]. Cognitive impairment may cause difficulty with concepts such as health [28], and a number of researchers consider self-rated health reports in people with intellectual disabilities to be limited as a stand-alone measurement of the quality of services [29,30]. Clients with ID in our survey reported a particularly high level of ‘‘good/very good’’ general health of 89% compared with other studies in similar settings of about 73% [31]. Younger clients with ID rated their health higher, similar to general population findings, but this pattern was lost in those with P/SD, possibly because functioning level in this group was more linked with the nature of people’s disability rather than their age per se. Proxy reports Some consider that proxy reports provide a limited substitute for self-reported health-related quality of life scales in those with ID [32]. The poorer quality of life reported in our study in those with severe/profound ID (by proxy) compared
% 80.4 47.8 84.8
p !.05 !.01 .056
with those with mild/moderate ID (mainly self-rated) may be real. Alternatively, proxies may be underrating quality of life elements, as found elsewhere [32,33]. In situations such as our study, where those with severe/profound ID cannot communicate, there seems to be sufficient agreement between proxies and clients to make proxy information useful [34]. Proxies tend to agree with self- reports on physical conditions [32]. The comparative poorer general health reported by advocates in clients with moderate or severe/ profound disability compared with mild/moderate may be a real phenomenon; certainly functioning was poorer in those with moderate/severe/profound ID. Self-rated quality of life and health in people with a physical/sensory disability We found those with P/SD to report a poorer quality of life than the general population and those with ID. This may be explained by ‘‘longing for a normal life or changes in living situation’’ as reported elsewhere [32]. Thus discrepancies between a person’s actual life and previous life in those with acquired physical disability may cause low quality of life scores. We found no relationship between acquiring P/SD (versus being born with disability) and quality of life, unlike others [35]. We found poorer ED5Q scores in those with P/SD; we concur with others that reduced functioning and/or anxiety is interrelated to quality of life [36]. Our findings of the low functioning levels of clients with P/SD point to the need for well-staffed support services within organizations, and at community level, to assist clients in activities and outings [37].
Table 6 Percentages Reporting Some Problem or Inability to Perform ED-5Q Parameters
Mobility Self-care Usual activities Pain Anxiety
Irish population
Intellectual disability (n 5 247)
Physical/sensory disability (n 5 180)
% 12.5 3.5 15.1 31.2 25.0
No. 58 79* 25x 35 46
No. 157 96y 77** 75z 54
% 23.5 32.0 10.1 14.2 18.6
* Males were less able to self-care than females in this group. ** Females were less able to carry out usual activities than males in this group. y Those with multiple sclerosis were less able to self care in this group. z More females reported pain. x Results to be interpreted with caution as concept poorly understood by clients. yy c2 between disability groups.
% 87.2 53.3 42.8 41.7 30.0
c2yy 178 19.6 62.2 41.1 7.5
p !.01 !.01 !.01 !.01 !.01
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Table 7 Association between level of intellectual disability (ID) and ED-5Q dimensions Some or severe problem reported with dimension
Dimension Mobility Self-care Usual activities Pain Anxiety
Mild/moderate ID (n 5 192)
Severe/profound ID (n 5 46)
n 36 37 16 29 32
n 20 41 9 5 13
% 18.8 19.3 8.3 15.1 16.7
Use of self rating health and quality of life instruments in disability surveys We found the EuroQol ED-5Q to be well understood by clients with ID, apart from the section on performing usual activities, which was difficult to explain to all clients, and seems unsuitable for a sample with disability. We used simple Likert scales, which are easily understandable, efficient and reliable in those with ID [38]. There is no category in EuroQol for clients who used a wheelchair, with a choice from ‘‘I have some problems in walking around’’ and ‘‘I am confined to bed’’. We recommend adaptation of EuroQol for use as a valid instrument in people with disabilities. Modifications of quality of life instruments (such as using pictograms or minor rephrasing of questions) and adaptation in survey methods (such as using sign language or an advocate) are required to extend self-assessments to people with ID and sensory disability. This may pose a limitation in interpretation and comparison of results between groups. Pictograms, as used in this study, have been recommended to communicate with people with ID [39-41]. One study of cross-cultural validity of pictograms has shown differences between interpretation by country [42], but it is unknown whether differences would exist between culturally similar groups of persons with disability. It is evident that the validity of quality of life instruments in disability requires ongoing exploration [43] and further research is required to examine the impact of functional status on health and quality of life, separately from disability itself. Mental health Mental health is a complex concept to investigate in clients with ID. Coping ability, as a form of mental health, was reported as poorer by those with ID. Service providers must be aware that clients may have a mental health problem in addition to an ID [44]. International literature bemoans the lack of mental health service provision for this group [45] and adapted means are needed to further measure and improve mental health in those with ID [46]. Many clients with P/SD reported anxiety, demonstrating, as in other research, the importance of diagnosing and dealing with mental ill-health, and providing coping strategies for clients and staff [47].
% 43.5 89.1 19.6 10.9 28.3
c2 12.6 82.2 4.98 0.54 3.2
p !.01 !.01 !.05 .461 .071
Our finding associating the presence in clients with ID or P/SD of ‘‘some/severe’’ anxiety with a lower quality of life rating is interesting and deserves further exploration. Pain The measurement of pain is frequently absent in disability surveys [48]. Pain is often underestimated by professionals [49] and is prevalent in particular disabilities [50]. The high levels of pain reported in those with P/SD in our survey with 40% reporting pain on the day of interview, highlights the importance of diagnosis and assessment of pain and provision of effective pain-relief mechanisms in clients with disability. Conclusion It has been recommended that collected indicators of health and well-being in people with disabilities be related to current and future policy issues [51]. The incorporation of health-related quality of life scores into planning services for people with disability is not routinely carried out. This is due to a number of issues related to conceptualization, measurement, and application [27,52]. In the past, evaluations of personal satisfaction and psychological well-being have been limited in those with a disability [53]. However, self-rated indices are valid measures [54] and our results provide an interesting baseline measurement. We conclude that health status and quality of life measures in these clients will provide a valuable element of this future planning. The findings presented here deserve further elucidation, with exploration of the impact of other factors on quality of life in people with disability. Important issues for people with disabilities need to be addressed, to ensure that changes in policy and practice reflect these issues. Measurements such as EuroQol alone can only provide part of an overall greater picture and an approach combining both quantitative and qualitative methods with longitudinal follow-up is needed to examine associated factors and pathways, to understand the mechanisms of best promoting health in people with a disability. Acknowledgments The authors gratefully acknowledge the help provided by disability organizations within the East Coast Area
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region, and are indebted to clients, advocates, parents and service providers for their views. Thanks are due to members of the Health Promotion Department, HSE East Coast Area, and the steering and advisory committee members for their guidance and to the interviewers. References [1] Dominick KL, et al. Relationship of health-related quality of life to health care utilization and mortality among older adults. Aging Clin Exp Res. 2002;14:499-508. [2] Idler EL, Benyamini Y. Self-rated health and mortality: a review of twenty-seven community studies. J Health Soc Behav. 1997;38: 21-37. [3] National Disability Authority. Towards the Best Practice in the Provision of Health Services for People With Disabilities in Ireland. Dublin: National Disability Authority; 2003. [4] Department of Health and Children. Statement of Strategy. Dublin: Government of Ireland; 2008. [5] SLAN. The National Health and Lifestyle Surveys. Health Promotion Unit, Department of Health and Children; Centre for Health Promotion Studies, National University of Ireland Galway; and Department of Public Health Medicine and Epidemiology, University College Dublin; 2003. [6] Drum C, et al. Self-rated health and healthy days: examining the disability paradox. Disabil Health. 2008;1:71-78. [7] Hofoss D. Healthy living does not reduce life satisfaction among physically handicapped persons. Patient Educ Counseling. 2004;52: 17-22. [8] Hughes RB, et al. Health promotion for women with physical disabilities: a pilot study. Rehabil Psychol. 2003;48:182-188. [9] Tate DG, et al. Quality of life issues among women with physical disabilities or breast cancer. Arch Phys Med Rehabil. 1997;78(12, suppl 5):S18-S25. [10] World Health Organization Quality of Life Group. The World Health Organization WHOQOL: Tests of the universality of quality of life in 15 different cultural groups worldwide. Health Psychol. 1999;18: 495-505. [11] EuroQoL Group. EuroQol: a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199-208. [12] Department of Health and Social Security. OPCS Surveys of Disability in Great Britain. London: Office for Population Censuses and Surveys; 1988. [13] Brazier JE, et al. Using the SF-36 and EuroQoL on an elderly population. Qual Life Res. 1996;5:195-204. [14] Rothwell P, et al. Doctors and patients don’t agree: cross sectional study of patients’ perceptions and assessments of disability in multiple sclerosis. BMJ. 1997;314:1580-1590. [15] Myers C, Wilks D. Comparison of EuroQoL EQ-5D and SF-36 in patients with chronic fatigue syndrome. Qual Life Res. 1999;8:9-16. [16] Barron S, Mulvany F. National Intellectual Disability Database Committee Annual Report. Dublin: Health Research Board; 2004. [17] Boland M, et al. Methodological issues in inclusive intellectual disability research: a health promotion needs assessment of people attending Irish disability services. J Appl Res Intell Disabil. 2008;21:199-207. [18] Daly L, et al. Interpretation and Uses of Medical Statistics. Oxford: Blackwell Science; 2000. [19] National Disability Authority. Ask Me: Guidelines for Effective Consultation With People With Disabilities. Dublin: National Disability Authority; 2002. [20] Albrecht G, Devlieger P. The disability paradox: high quality of life against all the odds. Soc Sci Med. 1999;48:977-988. [21] Cummins R. On the trail of the gold standard for subjective wellbeing. Soc Indic Res. 1995;35:179-200.
[22] Hatton C. Whose quality of life is it anyway? Some problems with the emerging quality of life consensus. Ment Retard. 1998;36:104115. [23] Sigelman CK, et al. When in doubt, say yes: acquiescence in interviews with mentally retarded persons. Ment Retard. 1981;19:53-58. [24] Cummins R. Self-rated quality of life scales for people with intellectual disability: a reply to Ager and Hatton. J Appl Res Intell Disabil. 2001;14:1-11. [25] Taylor WJ, et al. EuroQol EQ-5D may not adequately describe the health of people with disabilities. Disabil Rehabil. 2001;23:281-285. [26] Perry J, Felce D. Correlation between subjective and objective measures of outcome in staffed community housing. J Intell Disabil Res. 2005;49:278-287. [27] Verdugo MA, et al. Quality of life and its measurement: important principles and guidelines. J Intell Disabil Res. 2005;49(Pt 10):707-717. [28] Heal L, Sigelman C. Methodological issues in measuring the quality of life of individuals with mental retardation. In: Schalock R, Begab M, eds. Quality of Life: Perspectives and Issues. Washington, DC: American Association on Mental Retardation; 1990. [29] Hensel E. Is satisfaction a valid concept in the assessment of quality of life of people with disabilities? A review of the literature. J Appl Res Intell Disabil. 2001;14:311-326. [30] Hatton C, Ager A. Quality of life measurement and people with intellectual disabilities: a reply to Cummins. J Appl Res Intell Disabil. 2002;15:254-260. [31] Robertson, et al. Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Res Devel Disabil. 2001;21:469-486. [32] Zimmermann F, Endermann M. Self-proxy agreement and correlates of health-related quality of life in young adults with epilepsy and mild intellectual disabilities. Epilepsy Behav. 2008;13:202-211. [33] Sneeuw K, et al. Comparison of patients and proxy EORTC QLQC30 ratings in assessing the quality of life of cancer patients. J Clin Epidemiol. 1998;51:617-631. [34] Sprangers M, Aaronson N. The role of healthcare providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol. 1992;45:743-760. [35] Jamoom E, et al. Age at disability onset and self-reported health status. BMC Public Health. 2008;8. [36] Niv D, Kreitler S. Pain and quality of life. Pain Pract. 2001;1: 150-161. [37] Felce D, Perry J. The extent of support for ordinary living provided in staffed housing: the relationship between staffing levels, resident characteristics, staff:resident interactions and resident activity patterns. Soc Sci Med. 1995;40:799-810. [38] Hartley SL, MacLean WE Jr. A review of the reliability and validity of Likert-type scales for people with intellectual disability. J Intell Disabil Res. 2006;50(Pt 11):813-827. [39] Romski MA, Sevcik RA. Augmentative and Alternative Communication Systems: Considerations for Individuals With Severe Intellectual Disabilities. Informa Healthcare; 1988. [40] Inclusion Europe. Inclusion of People With Severe and Profound Intellectual Disability. Brussels: The European Association of Societies of Persons With Intellectual Disability and Their Families; 2003. [41] Noens I, van Berckelaer-Onnes I. Making sense in a fragmentary world-communication in people with autism and learning disability. Autism. 2004;8:197-218. [42] Heeryon C, et al. Semantics in pictogram communication. IPSJ SIG Tech Rep. 2006;110:1-8. [43] Ghislandi S, et al. Is EQ-5D a valid measure of HRQoL in patients with movement disorders? A comparison with SF-36 and FIM questionnaires. Eur J Health Econ. 2002;3:125-130. [44] Jones E, et al. Opportunity and the promotion of activity among adults with severe intellectual disability living in community residences: the impact of training staff in active support. J Intell Disabil Res. 1999;43:164-178.
M.C. Boland et al. / Disability and Health Journal 2 (2009) 95e103 [45] Holt G, et al. BIOMED-MEROPE project: service provision for adults with intellectual disability: a European comparison. J Intell Disabil Res. 2000;44(Pt 6):685-696. [46] Doody G, Neville B. Mental health services for people with learning disabilities. Br Med J. 2001;(301):322. [47] Elfstrom M, et al. Relations between coping strategies and healthrelated quality of life in patients with spinal cord lesion. J Rehabil Med. 2005;37:9-16. [48] Kind P, et al. Variations in population health status: results from a United Kingdom national questionnaire survey. BMJ. 1998;316:736-741. [49] Addington-Hall J, Kalra L. Measuring quality of life: who should measure quality of life? BMJ. 2001;322:1417-1420. [50] Schwartz L, et al. Pain in persons with cerebral palsy. Arch Phys Med Rehabil. 1999;80.
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[51] Walsh P, Schalock, et al. Quality of life and its measurement: important principles and guidelines. J Intell Disabil Res. 2005;49: 707-717. [52] Schalock RL, et al. The conceptualization and measurement of quality of life: implications for program planning and evaluation in the field of intellectual disabilities. Eval Program Plann. 2008;31: 181-190. [53] Emerson E. Evaluating the impact of deinstitutionalisation on the lives of mentally retarded people. Am J Ment Defic. 1995;88:345351. [54] Ware J, Sherbourne C. The MOS 36 item short form health survey (SF-36). 1. Conceptual framework and item selection. Med Care. 1992;30:473-483.
Self-rated health and quality of life in adults attending regional disability services in Ireland Ma´irı´n C. Boland, M.D., F.F.P.H.M.I., M.R.C.P.I.a,b,*, Leslie Daly, Ph.D., F.F.P.H.a, Anthony Staines, Ph.D., M.Sc., M.B., F.F.P.H.M.I.c a
UCD School of Public Health and Population Science, University College Dublin, Dublin 2, Ireland b Department of Public Health, Health Service Executive, Eastern Region, Dublin, Ireland c Department of Nursing, Dublin City University, Dublin, Ireland
Abstract Background: There is limited background information on self-rated health in people with disability in Ireland. This paper examines self-rated health scores and dimensions of functioning in people attending disability services and compares scores to the general population in Ireland, which has not been done before. Methods: Face-to-face interviews were carried out with 247 adults with intellectual disability and 180 with physical or sensory disability attending regional residential, day activity, or training disability centres in the East Coast Area of Ireland. EuroQol ED-5Q was used to assess five dimensions of functioning and quality of life, supplemented by questions taken from the national population study on general health, mental health, and quality of life. Results: Clients with intellectual disability scored their quality of life significantly higher than the adult general population. They scored their mental health significantly lower compared with clients with physical/sensory disability. Compared to clients with intellectual disability, and to the general population, clients with physical or sensory disability scored their quality of life significantly lower. They had more problems in all EuroQol ED-5Q dimensions (mobility; self-care; being able to carry out one’s usual activities; pain; and anxiety) than both the general population and clients with intellectual disability. Conclusion: These results give an insight into self-rated health and quality of life of regional disability services attendees. Findings provide an indicator of health needs and provide a baseline to measure the impact of interventions. Further elucidation of the relationship between functional impairment and quality of life in those with disability is needed. Factors affecting self-rating of health in people with intellectual disabilities need further exploration. Ó 2009 Elsevier Inc. All rights reserved. Keywords: Self-rated health; Quality of life; Functioning; Disability services
Self-rated health and quality of life measures are increasingly being recognized as a valid indicator of a person’s health status. Studies show that self-rated, health-related quality of life consistently predicts adverse health outcomes [1] and can be an independent predictor of mortality in older people [2]. It is vital that self-rated health and quality of life be measured in people with disability. In Ireland, the National Disability Strategy provides a framework of supports for people with disability [3] and the National Health Strategy [4] seeks to help people with disability to achieve their full potential, aiming for ‘‘better health for everyone.’’ The Irish population-based longitudinal survey [5] records self-rated * Corresponding author: Stewarts Sports Centre, The Mezzanine Floor, Waterstown Avenue, Palmerstown 20. Fax: 00-353-1-6421785. E-mail address: [email protected] (M.C. Boland). This study was funded through the Cardiovascular Strategy of the Health Services Executive, East Coast Area. 1936-6574/09/$ e see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.dhjo.2008.11.005
health and quality of life, but does not include people with disability who are in residential centers, as sampling is carried out among private homes. Thus, this study extends our knowledge about those with disability in Ireland. Measuring quality of life is complex in people with disability. People with disability may construct health, or the self-rating process, differently than those with no disability [6]. Indeed, people with disability may consider health as being able to function well, rather than the absence of illness [7]. Previous research shows that determinants of quality of life in people with disability include physical health and functional well-being, psychological well-being, social relationships and environment, and having a disability [7-10]. This study used the EuroQol instrument [11]. Healthrelated quality of life, measured by EuroQol, strongly correlates with the parameters of vitality, general health and mental health measured by the SF-36 method and the OPCS disability scores [12-15].
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We set out to compare self-rated quality of life, mental health, general health, and functioning between people with intellectual disabilities and those with physical/sensory disabilities attending regional disability services. We wanted to compare results to Irish population indicators.
Background There are 12 main organizations providing day, residential, and respite disability services to those with intellectual disability (ID) in the East Coast Area Health Board region of Ireland. This area covers South Dublin and Wicklow and has a population of approximately 325,000. Day services include day activation centers, special schools, resource centers, training, and sheltered or supported work/employment centers. Services are provided to over 900 clients with ID, in 60 separate centers, with some clients using both day and residential services. At the time of survey, of clients registered on the National Intellectual Disability Database (NIDD) in the Eastern Region [16], 54.7% attended day services and 30.5% attended 5- or 7-day residential services. There are nine main organizations in the region providing services for over 500 clients with physical/sensory disability (P/SD), with a total of 11 separate centers. Of clients on the National Physical/Sensory Disability Database, 51.3% attended day services, 10.5% used planned respite services, and 3.2% availed of residential services.
Methods Aims We undertook this study of self-rated health as part of a larger health promotion needs assessment to provide information to inform and direct policy in people attending regional disability services. This is the first large-scale triangulated study of people attending disability organizations in Ireland.
Recruitment and participants All 21 regional disability organizations (71 centers), described earlier, formed the sampling frame. National and support organizations were excluded. Clients under 15 years old were excluded. Each center was invited to participate. Each participating center completed a master list of clients attending, type of disability, and type of service attended. Clients were stratified by type of disability (intellectual or physical/sensory). Clients with ID at the moderate, severe, or profound level were placed into the ID category, even if they also had P/SD, as per Irish national disability databases [17]. Within each disability group (ID or P/SD), clients were stratified by care-type (residential, respite, or day care). Our sample size calculations were based on getting precision for various estimates. A representative random sample of 450 clients permitted estimates of prevalences ranging from 20% to 80% within a precision of 3.8% based on a 95% confidence interval [18]. Methods of data collection This study consisted of interviewer-directed questionnaires for clients. Two experienced interviewers were trained in consultation with people with disability [19] and interviewed 427 clients or advocates at the disability centers. Adapted methods were used to maximize participation. For those with P/SD this included a sign language interpreter and computer-aided devices. In clients with ID, the key worker acted as advocate when required: in some cases (51, 20.6%) in a minor way to support response, but in 71 (28.8%) of cases, particularly in those 46 clients with severe/profound ID, to provide proxy results. The surveys were piloted with six clients with P/SD and six clients with ID. Subsequent modifications were made to the questionnaires. Pictograms were understandable to clients during piloting. Measures of data collection
Planning the research An advisory group consisted of a person with a disability, a nutritionist, a health promotion director, and a services manager. The project steering group consisted of a statistician, an epidemiologist, and a sociologist. Ethical approval was obtained from the Faculty of Public Health Research Ethics Committee, Royal College of Physicians of Ireland, and from the Hospitaller Order of St. John of God, Research Ethics Committee. An introductory letter to organization CEOs and managers invited each center to participate in the research. Aims and methods were discussed with service providers (center managers) at a workshop, and the lead researcher (M.C.B.) visited all centers. A full description of the inclusive methodology has been reported [17].
The interviewer-directed questionnaire contained elements from the following existing instruments: The SLAN questionnaire, which has been used to survey health-related behavior in Irish people [5]. Clients were asked to rate their own general health, mental health, and quality of life on a Likert scale. For clients with ID, questions were rephrased and a pictogram was used (Fig. 1). EuroQol EQ-5D [11], a generic measure that describes function and quality of life in five dimensions: mobility, self-care, usual activities, pain or discomfort, and anxiety or depression. EuroQol was modified for clients with ID to understand (Fig. 2), which must be taken into account in comparisons.
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Q1. How do you feel today? (General Health) Q2. How do you cope or manage with things that happen every day? (Mental health) Q3. Do you enjoy life? (Quality of Life)
Really well
Well
Fair
Not very well
Figure 1. Adaption of questions on health and quality of life for clients with intellectual disability and pictogram face sequence, if needed.
Clients’ level of ID was recorded, as was the presence of other disability. Service providers gave an approximation of client’s level of ID where no recorded ID level was available. Data analysis Data were analyzed using Epi-Info statistical package (version 6) (Dean AG, 1996) and SPSS statistical package version 11 (SPSS Inc., 2002). The c2 test was used to compare proportions, and the t-test to compare means. Logistic regression analyses examined disability group (ID or P/SD) as a predictor of general health, mental health, and quality of life both overall (crude) and adjusted for age and sex. Proportions were compared with results from the national population survey, and because the sample size in this study was relatively small, detection of an interaction effect was considered unlikely.
Self-rated health and quality of life Clients with ID rated their quality of life significantly higher, and their mental health significantly lower than did clients with P/SD, after adjusting for age and sex (Table 4). Clients with ID rated their quality of life higher than respondents to the Irish population survey (c2 5 6.25, p ! .05). Clients with P/SD, compared with the Irish population, rated their quality of life significantly lower (c2 5 9.24, p ! .01). There was no significant difference in general health self-reports between clients with ID, P/SD, and the general population. Among those with ID, clients with mild or moderate ID rated their general health and mental health significantly higher compared with those with severe/profound disability (Table 5). Younger clients with ID reported better general health, with 46.2% (90 of 195) of under 45-year-olds reporting very good health compared with 29.4% (15 of 51) of clients over 45 (c2 5 4.6, p ! .05).
Results Q. Here are some questions about how you are TODAY.
Of the 21 organizations, 18 (81.8%) participated in the study. The total sample achieved was 427 (94.8% response rate). Demographics Of the clients reported, 247 (57.8%) had primarily an ID and 180 (42.2%) had primarily a P/SD, because of sampling methodology (Table 1). Many had a mixed disability. Tables 2 and 3 show the causes of disability (when available) for clients with ID and P/SD, respectively. The mean age of the clients with ID was 35.5 years (SD 12, range 15e65). Those with P/SD were significantly older, with a mean age of 61.9 years (SD 19.2, range 15e98) (t 5 17.5, p ! .01). Thus, the sample with P/SD was older than the adult Irish population (the median age of the population in Ireland over 15 years old is 39 years). There were similar numbers of males (120, 48.6%) and females (127, 51.4%) with ID. There were more females (110, 61.1%) than males (70, 38.9%) with P/SD. There was no age difference between the genders.
a) Can you walk today? 1. I can walk around with no problem 2. I have some problems in walking about 3. I use a wheelchair 4. I have to stay in bed b) How are you at washing and dressing yourself today? 1. I can wash and dress myself with no problem 2. I have some problems with washing and dressing myself 3. I can’t wash and dress myself c) Usual Activities (e.g. work, sport, family, leisure) 1. I have no problems doing my usual activities 2. I have some problems doing my usual activities 3. I have a lot of problems doing my usual activities d) Have you any pain or discomfort today? 1. I have no pain 2. I have some pain 3. I have a lot of pain e) Are you worried or anxious today? 1. I’m not worried 2. I’m a bit worried 3. I’m really worried Figure 2. EuroQol ED-5Q modified for clients with intellectual disability
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Table 1 Description of Disability and Categorisation of Respondents Disability category Description of disability(s)
Number of clients Percent within category Percent within total clients
Intellectual disability Intellectual disability alone 134 Intellectual* and sensory disability (54) Intellectual and sensory disability: deaf and blind, speech 4 Intellectual and visual impairment alone 11 Intellectual and hearing impairment alone 8 Intellectual and speech impairment alone 31 Intellectual* and physical disability (59) Intellectual, physical, deaf, blind, speech 5 Intellectual, physical, speech 15 Intellectual, physical, blind, speech 2 Intellectual, physical alone 37 Category subtotal 247 Physical/sensory disability Physical disability alone 114 Physical and other disability (66) Physical, sensory and intellectual (mild) 6 Physical and intellectual (mild) 9 Physical and sensory 41 Sensory disability alone 8 Sensory and intellectual (mild) 2 Category subtotal 180 Table total 427
54.2
31.4
1.6 4.5 3.2 12.7
0.9 2.5 1.7 7.3
2.0 6.0 0.8 15.0 100.0
1.2 3.5 0.4 8.6 57.8
63.4
26.6
3.3 5.0 22.8 4.4 1.1 100.0
1.5 2.1 9.6 1.9 0.5 42.2 100.0
* Moderate, severe, or profound intellectual disability.
Among those with P/SD, males reported better general health than females, with 91.4% (64 of 70) males reporting ‘‘very good or good’’ health compared with 77.3% (85 of 110) of females (c2 5 6.0, p ! .01). Age was not associated with self-rated health or quality of life in those with P/SD. The presence of the disability since birth was not associated with self-rated quality of life. The 163 clients with P/SD but without ID reported better mental health compared with those without ID (c2 5 4.7, p ! .01), with 96.9% (158) reporting ‘‘very good or good’’ mental health. Clients with specific disabilities were compared with the remainder of the disability group. Numbers were small and no significant results were reached. ‘‘Good/very good’’ general health was reported by fewer clients with arthritis (79.3%) and multiple sclerosis (72.7%) (nonsignificant [NS]). ‘‘Good/very good’’ quality of life was reported by more clients with Down syndrome (95.2%), more clients with cerebral palsy without ID (85.7%); and more clients with multiple sclerosis (90.9%) (all NS). A higher proportion of clients with deafness reported ‘‘good/very good’’ general health (100%) and quality of life (100%) (both NS). Results of EuroQoL: ED-5Q Table 6 compares self-rated EuroQol dimensions in clients with disability and the Irish population. Clients with ID reported more problems with mobility and self-care than the general population, but less anxiety and less pain. Compared to clients with ID, clients with P/SD had significantly more problems in mobility, self-care, and
being able to carry out one’s usual activities. They also reported significantly more pain and anxiety. Also, 31.1% (56) of clients with P/SD reported moderate pain and 10.6% (19) reported extreme pain. More women than men with P/SD reported pain (c2 5 12.7, p ! .01). There was no gender difference in terms of anxiety reporting. Clients with P/SD reported more problems with all dimensions than the general population. Certain disability subgroups reported higher wheelchair use: those with multiple sclerosis (c2 5 29.3, p ! .01), spina bifida (c2 5 5.8, p ! .05), and cerebral palsy (c2 5 5.6, p ! .05). Those with multiple sclerosis reported more problems in self-care (c2 5 6.5, p ! .01). Table 2 Diagnosis Provided for Clients with Intellectual Disability (n 5 247) Diagnosis/cause of intellectual disability
No.
%
Down syndrome Autism or Asperger’s syndrome Cerebral palsy Congenital rubella syndrome Other neurological diagnosis* or behavioral Post head injury Other congenital syndromey Total with any diagnosis Total with no diagnosis
42 25 11 10 6 5 4 103 144
17.0 10.1 4.5 4.0 2.4 2.0 1.6 41.7 58.3
* Other neurological/behavioral diagnoses included hydrocephalus (2), alcohol-induced memory loss, psychiatric disorder/depression, and attention-deficit disorder. y Clients with other congenital syndromes had Rubenstein-Taybi syndrome, Angelman’s syndrome, and other unidentified genetic syndromes.
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Table 3 Description of Cause of Disability for Clients with Physical/Sensory Disability (n 5 180) Description of physical/sensory disability
No.
%
Description of physical/sensory disability
No.
%
Stroke Arthritis (osteoarthritis and rheumatoid) Multiple sclerosis Cerebral palsy Injuryy Spina bifida Parkinson’s disease Deafness (6 congenital, 1 post-measles, 1 with Usher’s syndrome)
37 26 22 21 13 11 8 8
20.6 14.4 12.2 11.7 7.2 6.1 4.4 4.4
Head injury Other neurological disorders* Other circulatory disease** Brain tumor Muscular dystrophy Other musculoskeletal diseasez Blind, diabetic retinopathy Otherx
8 8 5 4 3 3 1 2
4.4 4.4 2.7 2.2 1.7 1.7 0.6 1.1
* Other neurological disorders included polio, Friedrich’s ataxia, nonspecified ataxia, peripheral neuropathy, cerebellar ataxia, dementia, and a nonspecified leg problem. ** Circulatory disorders other than CVA included heart/lung disease post breast cancer, nonspecified cancer causing heart-lung disorder, phlebitis, angina, irregular heartbeat, and peripheral vascular disease. y Injury clients comprised four with limb injury, three with limb loss, and six with other injury such as spinal cord. z Other musculoskeletal disease included Paget’s disease. x Other included gastrointestinal disorder and age-related infirmity.
‘‘Very good/good’’ self-rated quality of life was significantly associated with having no anxiety, in both clients with ID (c2 5 22.3, p ! .01) and P/SD (c2 5 7.9, p ! .01). Table 7 examines the association between level of ID and self-rated health, quality of life and EuroQol ED-5Q dimensions. Those with mild or moderate ID had significantly fewer problems with mobility, self-care, and usual activities, compared with those with severe/profound disability.
is consistent with other reports; although in our study ‘‘very good/good’’ quality of life levels in those with P/ SD was particularly high compared with 54% found in other studies [20]. The substantially higher quality of life reported by those with ID compared with those with P/SD is an interesting finding. Our results are consistent with other research [21] which detected no reduction in quality of life score in those with ID compared with the general population, but reported lower scores for those with chronic disease.
Discussion This study found that clients with ID attending disability services rate their general health and quality of life highly. Those with physical disability reported poorer self-rated health and, as expected, had more functional limitations. Our finding of high quality of life in those with disability
Self-rated quality of life and health in people with an intellectual disability The validity of self-rated scales by people with intellectual disabilities has been debated [22]. We were alert to the
Table 4 Disability as a Predictor of Self-rated Health, Adjusted for Age and Sex General health ‘very good or good’ %
Unadjusted OR (95% CI)
Adjusted OR y (95% CI)
Mental health ‘very good or good’ %
Unadjusted OR (95% CI)
Adjusted OR (95% CI)
Quality of life ‘very good or good’ y
%
Unadjusted OR (95% CI)
Adjusted OR (95% CI)
y
P/SD ID
82.2 89.1
1.0 1.76 (1.01e3.06)*
e 1.67 (0.82e3.35)
95.6 70.0
1.0 0.11 (0.05e0.23)**
e 0.10** (0.04e0.24)
77.2 91.1
e 3.02 (1.72e5.3)*
e 2.26 (1.09e4.67)**
Age (years) !40 40e59
88.8 85.0
Male Female
90.0 83.5
1.0 0.82 (0.48e1.4) 4.38 (1.9e10.1)* 1.0 0.60 (0.39e0.92)*
e 0.52 (0.29e0.92) 0.89 (0.32e2.49) e 0.71 (0.42e1.18)
90.8 87.4
84.1
e 0.95 (0.40e2.2) 0.81 (0.37e1.74) e 0.59 (0.37e1.7)
77.5 74.0
60þ
1.0 0.71 (0.37e1.40) 0.67 (0.34e1.32) 1.0 0.56 (0.31e1.01)
e 0.70 (0.34e1.40) 0.30 (0.16e0.59)* e 0.85 (0.49e1.47)
e 0.90 (0.42e1.9) 0.56 (0.24e1.3) e 0.98 (0.55e1.73)
Irish adultsz
86.6
y
93.8 82.1 79.5
75.2 86.8 84.7 85.4
Adjusted for age, sex, and disability group * p value !.05. ** p value !.01. z SLAN survey (SLAN, 2003) 5992 respondents. No comparative question was asked about mental health.
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Table 5 Association Between Level of Intellectual Disability (ID) and Elements of Health-Related Quality of Life Item reported as ‘good’ or ‘very good’
Item General health Mental health Quality of life
Mild/moderate ID (n 5 192)
Severe/profound ID (n 5 46)
Statistical tests
No. 175 142 179
No. 37 22 39
c2 4.4 8.3 3.64
% 91.1 84.0 93.2
possibility of acquiescence [23], which was reduced by methodological means [17]. Some researchers regard quality of life scales as a valuable tool in identifying and comparing experiences among people with ID [21,24], Some think quality of life must be self-rated by those with ID as it is a subjective experience only [25]. Quality of life studies in people with ID have found assessments of objective life conditions and personal satisfaction to be distinct [26]. However, several observers consider objective indicators to be preferable to subjective ones in measuring personal outcomes in those with ID [27]. Cognitive impairment may cause difficulty with concepts such as health [28], and a number of researchers consider self-rated health reports in people with intellectual disabilities to be limited as a stand-alone measurement of the quality of services [29,30]. Clients with ID in our survey reported a particularly high level of ‘‘good/very good’’ general health of 89% compared with other studies in similar settings of about 73% [31]. Younger clients with ID rated their health higher, similar to general population findings, but this pattern was lost in those with P/SD, possibly because functioning level in this group was more linked with the nature of people’s disability rather than their age per se. Proxy reports Some consider that proxy reports provide a limited substitute for self-reported health-related quality of life scales in those with ID [32]. The poorer quality of life reported in our study in those with severe/profound ID (by proxy) compared
% 80.4 47.8 84.8
p !.05 !.01 .056
with those with mild/moderate ID (mainly self-rated) may be real. Alternatively, proxies may be underrating quality of life elements, as found elsewhere [32,33]. In situations such as our study, where those with severe/profound ID cannot communicate, there seems to be sufficient agreement between proxies and clients to make proxy information useful [34]. Proxies tend to agree with self- reports on physical conditions [32]. The comparative poorer general health reported by advocates in clients with moderate or severe/ profound disability compared with mild/moderate may be a real phenomenon; certainly functioning was poorer in those with moderate/severe/profound ID. Self-rated quality of life and health in people with a physical/sensory disability We found those with P/SD to report a poorer quality of life than the general population and those with ID. This may be explained by ‘‘longing for a normal life or changes in living situation’’ as reported elsewhere [32]. Thus discrepancies between a person’s actual life and previous life in those with acquired physical disability may cause low quality of life scores. We found no relationship between acquiring P/SD (versus being born with disability) and quality of life, unlike others [35]. We found poorer ED5Q scores in those with P/SD; we concur with others that reduced functioning and/or anxiety is interrelated to quality of life [36]. Our findings of the low functioning levels of clients with P/SD point to the need for well-staffed support services within organizations, and at community level, to assist clients in activities and outings [37].
Table 6 Percentages Reporting Some Problem or Inability to Perform ED-5Q Parameters
Mobility Self-care Usual activities Pain Anxiety
Irish population
Intellectual disability (n 5 247)
Physical/sensory disability (n 5 180)
% 12.5 3.5 15.1 31.2 25.0
No. 58 79* 25x 35 46
No. 157 96y 77** 75z 54
% 23.5 32.0 10.1 14.2 18.6
* Males were less able to self-care than females in this group. ** Females were less able to carry out usual activities than males in this group. y Those with multiple sclerosis were less able to self care in this group. z More females reported pain. x Results to be interpreted with caution as concept poorly understood by clients. yy c2 between disability groups.
% 87.2 53.3 42.8 41.7 30.0
c2yy 178 19.6 62.2 41.1 7.5
p !.01 !.01 !.01 !.01 !.01
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Table 7 Association between level of intellectual disability (ID) and ED-5Q dimensions Some or severe problem reported with dimension
Dimension Mobility Self-care Usual activities Pain Anxiety
Mild/moderate ID (n 5 192)
Severe/profound ID (n 5 46)
n 36 37 16 29 32
n 20 41 9 5 13
% 18.8 19.3 8.3 15.1 16.7
Use of self rating health and quality of life instruments in disability surveys We found the EuroQol ED-5Q to be well understood by clients with ID, apart from the section on performing usual activities, which was difficult to explain to all clients, and seems unsuitable for a sample with disability. We used simple Likert scales, which are easily understandable, efficient and reliable in those with ID [38]. There is no category in EuroQol for clients who used a wheelchair, with a choice from ‘‘I have some problems in walking around’’ and ‘‘I am confined to bed’’. We recommend adaptation of EuroQol for use as a valid instrument in people with disabilities. Modifications of quality of life instruments (such as using pictograms or minor rephrasing of questions) and adaptation in survey methods (such as using sign language or an advocate) are required to extend self-assessments to people with ID and sensory disability. This may pose a limitation in interpretation and comparison of results between groups. Pictograms, as used in this study, have been recommended to communicate with people with ID [39-41]. One study of cross-cultural validity of pictograms has shown differences between interpretation by country [42], but it is unknown whether differences would exist between culturally similar groups of persons with disability. It is evident that the validity of quality of life instruments in disability requires ongoing exploration [43] and further research is required to examine the impact of functional status on health and quality of life, separately from disability itself. Mental health Mental health is a complex concept to investigate in clients with ID. Coping ability, as a form of mental health, was reported as poorer by those with ID. Service providers must be aware that clients may have a mental health problem in addition to an ID [44]. International literature bemoans the lack of mental health service provision for this group [45] and adapted means are needed to further measure and improve mental health in those with ID [46]. Many clients with P/SD reported anxiety, demonstrating, as in other research, the importance of diagnosing and dealing with mental ill-health, and providing coping strategies for clients and staff [47].
% 43.5 89.1 19.6 10.9 28.3
c2 12.6 82.2 4.98 0.54 3.2
p !.01 !.01 !.05 .461 .071
Our finding associating the presence in clients with ID or P/SD of ‘‘some/severe’’ anxiety with a lower quality of life rating is interesting and deserves further exploration. Pain The measurement of pain is frequently absent in disability surveys [48]. Pain is often underestimated by professionals [49] and is prevalent in particular disabilities [50]. The high levels of pain reported in those with P/SD in our survey with 40% reporting pain on the day of interview, highlights the importance of diagnosis and assessment of pain and provision of effective pain-relief mechanisms in clients with disability. Conclusion It has been recommended that collected indicators of health and well-being in people with disabilities be related to current and future policy issues [51]. The incorporation of health-related quality of life scores into planning services for people with disability is not routinely carried out. This is due to a number of issues related to conceptualization, measurement, and application [27,52]. In the past, evaluations of personal satisfaction and psychological well-being have been limited in those with a disability [53]. However, self-rated indices are valid measures [54] and our results provide an interesting baseline measurement. We conclude that health status and quality of life measures in these clients will provide a valuable element of this future planning. The findings presented here deserve further elucidation, with exploration of the impact of other factors on quality of life in people with disability. Important issues for people with disabilities need to be addressed, to ensure that changes in policy and practice reflect these issues. Measurements such as EuroQol alone can only provide part of an overall greater picture and an approach combining both quantitative and qualitative methods with longitudinal follow-up is needed to examine associated factors and pathways, to understand the mechanisms of best promoting health in people with a disability. Acknowledgments The authors gratefully acknowledge the help provided by disability organizations within the East Coast Area
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