Physical health in adults with severe or profound intellectual and motor disabilities
van Timmeren, Everdina Aafke
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Physical health in adults with severe or profound
intellectual and motor disabilities
The work presented in this thesis was performed at the Research Group Healthy Ageing, Allied Health Care and Nursing, Hanze University of Applied Sciences, Groningen, the Netherlands, at the Research Institute SHARE of the Groningen Graduate School of Medical Sciences of the University Medical Center Groningen, University of Groningen, the Netherlands.
Cover design Marjolijn Wagenaar
Printing Ridderprint BV, www.ridderprint.nl
ISBN 978-94-034-1441-6
ISBN 978-94-034-1440-9 (Ebook)
© 2019 Dinette van Timmeren
All rights reserved. No parts of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the prior written permission of the copyright owner.
Physical health in adults with severe or
profound intellectual and motor disabilities
Proefschrift
ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen
op gezag van de
rector magnificus, prof. dr. E. Sterken en volgens besluit van het College voor Promoties.
De openbare verdediging zal plaatsvinden op maandag 11 maart 2019 om 16.15 uur
door
Everdina Aafke van Timmeren
geboren op 24 augustus 1964The work presented in this thesis was performed at the Research Group Healthy Ageing, Allied Health Care and Nursing, Hanze University of Applied Sciences, Groningen, the Netherlands, at the Research Institute SHARE of the Groningen Graduate School of Medical Sciences of the University Medical Center Groningen, University of Groningen, the Netherlands.
Cover design Marjolijn Wagenaar
Printing Ridderprint BV, www.ridderprint.nl
ISBN 978-94-034-1441-6
ISBN 978-94-034-1440-9 (Ebook)
© 2019 Dinette van Timmeren
All rights reserved. No parts of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the prior written permission of the copyright owner.
Physical health in adults with severe or
profound intellectual and motor disabilities
Proefschrift
ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen
op gezag van de
rector magnificus, prof. dr. E. Sterken en volgens besluit van het College voor Promoties.
De openbare verdediging zal plaatsvinden op maandag 11 maart 2019 om 16.15 uur
door
Everdina Aafke van Timmeren
geboren op 24 augustus 1964Promotores
Prof. dr. C.P. van der Schans
Prof. dr. H.M.J. van Schrojenstein Lantman-de Valk Prof. dr. A.A.J. van der Putten
Copromotor Dr. A. Waninge Beoordelingscommissie Prof. dr. C. Vlaskamp Prof. dr. H. Vermeulen Prof. dr. M. McCarron CONTENTS
Chapter 1 General introduction 7
Chapter 2 Physical health issues in adults with severe or profound 17 Intellectual and motor disabilities: a systematic review of
cross-sectional studies.
Journal of Intellectual Disability Research, 2017; 61(1): 30-49.
Chapter 3 Prevalence of reported physical health problems in people 47 with severe or profound intellectual and motor disabilities:
a cross-sectional study of medical records and care plans.
Journal of Intellectual Disability Research 2016; 60(11): 1109-1118.
Chapter 4 Patterns of multimorbidity in people with severe or profound 63 intellectual and motor disabilities.
Research in Developmental Disabilities 2017; 67: 28-33.
Chapter 5 Identifying physical health problems in adults with severe or 77 profound intellectual and motor disabilities: an inventory of
measurement methods and their reliability and validity.
Submitted
Chapter 6 The convergent validity of a Dutch Screening tool for Dysphagia 107 (Signaleringslijst Verslikken) for people with severe or
profound intellectual and multiple disabilities.
Submitted
Chapter 7 General discussion 121
Samenvatting 130
Dankwoord 135
Promotores
Prof. dr. C.P. van der Schans
Prof. dr. H.M.J. van Schrojenstein Lantman-de Valk Prof. dr. A.A.J. van der Putten
Copromotor Dr. A. Waninge Beoordelingscommissie Prof. dr. C. Vlaskamp Prof. dr. H. Vermeulen Prof. dr. M. McCarron CONTENTS
Chapter 1 General introduction 7
Chapter 2 Physical health issues in adults with severe or profound 17 Intellectual and motor disabilities: a systematic review of
cross-sectional studies.
Journal of Intellectual Disability Research, 2017; 61(1): 30-49.
Chapter 3 Prevalence of reported physical health problems in people 47 with severe or profound intellectual and motor disabilities:
a cross-sectional study of medical records and care plans.
Journal of Intellectual Disability Research 2016; 60(11): 1109-1118.
Chapter 4 Patterns of multimorbidity in people with severe or profound 63 intellectual and motor disabilities.
Research in Developmental Disabilities 2017; 67: 28-33.
Chapter 5 Identifying physical health problems in adults with severe or 77 profound intellectual and motor disabilities: an inventory of
measurement methods and their reliability and validity.
Submitted
Chapter 6 The convergent validity of a Dutch Screening tool for Dysphagia 107 (Signaleringslijst Verslikken) for people with severe or
profound intellectual and multiple disabilities.
Submitted
Chapter 7 General discussion 121
Samenvatting 130
Dankwoord 135
CHAPTER
1
CHAPTER
1
People with severe or profound intellectual and motor disabilities (SPIMD) experience a number of physical health problems. Research shows that there is a strong relation between the level of ID and the prevalence of these problems; the number of physical health problems increases with an increase of the level of ID (Kinnear et al., 2018). The presence of physical health problems negatively impacts the quality of life. Therefore, the quality of life of people with SPIMD decreases if the number of physical health problems increases (Petry, Maes, & Vlaskamp, 2009).
Framework of physical health in people with SPIMD
Health is ‘a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity’ (WHO, 1948). This definition acknowledges three interrelated dimensions to health – a physical, mental, and social dimension
(biopsychosocial). Physical health relates to the functioning of the physical body. There are many different physical health problems -diseases, injuries, and disabilities - that can impair this functioning to a greater or lesser degree. Each of these physical health problems has features and processes associated with it that influence the health of a person.
The International Classification of Functioning, Disability and Health (ICF) model represents the biopsychosocial model (WHO, 2001). Physical health problems are classified in this model as impairments in relation to a specific body function or structure. The ICF model envisions the interaction between body function and structure, performing activities, and participation (Figure 1). According to the ICF, physical health problems interfere with the person’s ability to perform daily activities and to participate in social activities.
Figure 1. International Classification of Functioning, Disability and Health (ICF) model (WHO, 2001)
The functional consequences of physical health problems are often more severe for a person who already has an impairment (Traci, Seekins, Szalda-Petree, & Ravesloot, 2002; Sutton & de Jong, 1998). In addition to a severe or profound intellectual disability, people with SPIMD encounter motor impairments, sensory impairments, and multiple
Body Function & Structure/ Impairment Activity/ Activity limitation Participation/ Participation restriction Personal factors Environmental factors Health condition (Disorder or Disease)
physical health problems (Nakken & Vlaskamp, 2007) that all contribute to activity limitations and participation restrictions. Therefore, people with SPIMD require a high level of support with respect to all daily activities (Nakken & Vlaskamp 2007). The intellectual disability, motor impairment, and sensory impairment reinforce each other, because people with SPIMD have fewer opportunities to compensate for a disability. For example, people with SPIMD may be unable to compensate their vision loss by utilizing their motor abilities or cognitive capabilities (Kiestra, 2005). The compensation mechanisms collapse which causes additional limitations in activities and participation. Even a minor health problem such as impacted ear wax can have a significant impact on the activity and participation of a person with SPIMD because it further impairs the ability to communicate and interact with the social environment (Baxter et al, 2006).
Physical health problems in people with SPIMD
People with SPIMD have two key defining characteristics: (a) severe or profound intellectual disability (i.e., estimated intelligence quotient <35 points) and (b) profound motor disability manifesting in an inability to move independently. The ‘combination’ of severe or profound intellectual and profound motor disabilities is usually caused by dysfunction of the central nervous system as a result of genetic defects, congenital brain damage, degenerative disorders, disorders of the metabolism, or problems during pregnancy or childbirth (Petry & Maes, 2007; Zijlstra & Vlaskamp, 2005). People with SPIMD experience primary lifelong physical health problems such as epilepsy, mobility impairment, hearing impairment, and visual impairment that are directly caused by their severe brain damage/dysfunction. Furthermore, they are vulnerable to secondary health problems that occur in addition to (and are related to) a primary health problem, for example, gastro-oesophageal reflux disease, constipation (van Schrojenstein Lantman-de Valk & Walsh 2008), pressure ulcers, or contractures (Field & Jette, 2007). Over and above, secondary physical health problems can lead to new additional health problems (Field & Jette, 2007). For instance, gastro-oesophageal reflux disease can lead to recurrent pneumonia, bronchitis, and cancer (de Veer, Bos, Niezen-de Boer, Böhmer, & Francke, 2008). Consequently, people with SPIMD are more likely to be prescribed multiple medications which can subsequently adversely affect health through medication side-effects. The onset of these chains of events of physical health problems begins early in life for this population.
Both secondary health problems and resulting additional health problems are potentially preventable if good preventive strategies are available and are used (Field & Jette, 2007). For example, people with more severe ID are likely to experience dysphagia (Chadwick & Jolliffe, 2009). Known complications of dysphagia are choking, aspiration, respiratory tract infections, and death (Robertson, Chadwick, Baines, Emerson, & Hatton, 2018). A respiratory tract infection is the most common cause of death for people with SPIMD and is considered to be potentially avoidable (Heslop et al., 2014; Hosking et al., 2016). Improved identification and management of dysphagia may prevent the
People with severe or profound intellectual and motor disabilities (SPIMD) experience a number of physical health problems. Research shows that there is a strong relation between the level of ID and the prevalence of these problems; the number of physical health problems increases with an increase of the level of ID (Kinnear et al., 2018). The presence of physical health problems negatively impacts the quality of life. Therefore, the quality of life of people with SPIMD decreases if the number of physical health problems increases (Petry, Maes, & Vlaskamp, 2009).
Framework of physical health in people with SPIMD
Health is ‘a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity’ (WHO, 1948). This definition acknowledges three interrelated dimensions to health – a physical, mental, and social dimension
(biopsychosocial). Physical health relates to the functioning of the physical body. There are many different physical health problems -diseases, injuries, and disabilities - that can impair this functioning to a greater or lesser degree. Each of these physical health problems has features and processes associated with it that influence the health of a person.
The International Classification of Functioning, Disability and Health (ICF) model represents the biopsychosocial model (WHO, 2001). Physical health problems are classified in this model as impairments in relation to a specific body function or structure. The ICF model envisions the interaction between body function and structure, performing activities, and participation (Figure 1). According to the ICF, physical health problems interfere with the person’s ability to perform daily activities and to participate in social activities.
Figure 1. International Classification of Functioning, Disability and Health (ICF) model (WHO, 2001)
The functional consequences of physical health problems are often more severe for a person who already has an impairment (Traci, Seekins, Szalda-Petree, & Ravesloot, 2002; Sutton & de Jong, 1998). In addition to a severe or profound intellectual disability, people with SPIMD encounter motor impairments, sensory impairments, and multiple
Body Function & Structure/ Impairment Activity/ Activity limitation Participation/ Participation restriction Personal factors Environmental factors Health condition (Disorder or Disease)
physical health problems (Nakken & Vlaskamp, 2007) that all contribute to activity limitations and participation restrictions. Therefore, people with SPIMD require a high level of support with respect to all daily activities (Nakken & Vlaskamp 2007). The intellectual disability, motor impairment, and sensory impairment reinforce each other, because people with SPIMD have fewer opportunities to compensate for a disability. For example, people with SPIMD may be unable to compensate their vision loss by utilizing their motor abilities or cognitive capabilities (Kiestra, 2005). The compensation mechanisms collapse which causes additional limitations in activities and participation. Even a minor health problem such as impacted ear wax can have a significant impact on the activity and participation of a person with SPIMD because it further impairs the ability to communicate and interact with the social environment (Baxter et al, 2006).
Physical health problems in people with SPIMD
People with SPIMD have two key defining characteristics: (a) severe or profound intellectual disability (i.e., estimated intelligence quotient <35 points) and (b) profound motor disability manifesting in an inability to move independently. The ‘combination’ of severe or profound intellectual and profound motor disabilities is usually caused by dysfunction of the central nervous system as a result of genetic defects, congenital brain damage, degenerative disorders, disorders of the metabolism, or problems during pregnancy or childbirth (Petry & Maes, 2007; Zijlstra & Vlaskamp, 2005). People with SPIMD experience primary lifelong physical health problems such as epilepsy, mobility impairment, hearing impairment, and visual impairment that are directly caused by their severe brain damage/dysfunction. Furthermore, they are vulnerable to secondary health problems that occur in addition to (and are related to) a primary health problem, for example, gastro-oesophageal reflux disease, constipation (van Schrojenstein Lantman-de Valk & Walsh 2008), pressure ulcers, or contractures (Field & Jette, 2007). Over and above, secondary physical health problems can lead to new additional health problems (Field & Jette, 2007). For instance, gastro-oesophageal reflux disease can lead to recurrent pneumonia, bronchitis, and cancer (de Veer, Bos, Niezen-de Boer, Böhmer, & Francke, 2008). Consequently, people with SPIMD are more likely to be prescribed multiple medications which can subsequently adversely affect health through medication side-effects. The onset of these chains of events of physical health problems begins early in life for this population.
Both secondary health problems and resulting additional health problems are potentially preventable if good preventive strategies are available and are used (Field & Jette, 2007). For example, people with more severe ID are likely to experience dysphagia (Chadwick & Jolliffe, 2009). Known complications of dysphagia are choking, aspiration, respiratory tract infections, and death (Robertson, Chadwick, Baines, Emerson, & Hatton, 2018). A respiratory tract infection is the most common cause of death for people with SPIMD and is considered to be potentially avoidable (Heslop et al., 2014; Hosking et al., 2016). Improved identification and management of dysphagia may prevent the
occurrence of complications such as respiratory tract infections, reduce hospital admissions, and prevent premature death (Robertson et al., 2018).
Measurement methods for the identification of the physical health problems The identification of physical health problems is complex in people with SPIMD. They have difficulties in communicating the presence of a health problem because of their
unconventional way of communication. Instead of verbal communication, these individuals use body language, vocal sounds, and facial expressions to communicate (Petry, Maes, & Vlaskamp, 2005), and it is often only a change in their behaviour that gives an indication that they are experiencing a problem. This way of communication forms a barrier for daily caregivers in identifying physical health problems. Health problems with less visible signs and symptoms are especially easily overlooked (Zijlstra & Vlaskamp, 2005). As people with SPIMD are unable to report their problems in a
conventional way, it is important that daily caregivers, such as direct support staff, are aware of physical health problems that are common. A serious degree of suspicion is needed so that they will be attentive to signs and symptoms of these physical health problems. Therefore, daily caregivers require knowledge about which physical health problems are common in people with SPIMD and which co-occur. However, only limited scientific evidence exists regarding the prevalence of physical health problems in people with SPIMD. Studies reporting on their prevalence in this population focused only on a single or a limited number of particular health problems and not on the entire range of health issues (Gittins & Rose, 2008; Nagae et al., 2013; Ohwada & Nakayama, 2008; Ohwada, Nakayama, Nara, Tomono, & Yamanaka, 2006; van den Broek, Janssen, van Ramshorst, & Deen, 2006) or on patterns of co-occurring physical health problems. Therefore, there is insufficient knowledge regarding the entire range of common physical health problems in people with SPIMD and which health problems tend to occur together. Better understanding of the prevalence and the co-occurrence of common problems may lead to proactive prevention strategies including early identification of secondary physical health problems. This will help daily caregivers and other professionals to monitor people with SPIMD for common preventable or manageable physical health problems.
To monitor physical health problems, instruments with adequate psychometric properties are necessary. However, not all standard measurement methods for the identification of these problems are appropriate for people with SPIMD. The complex difficulties associated with the interrelatedness of the intellectual, motor disabilities, and physical health problems influences the measurement outcome (Nakken & Vlaskamp, 2007). For example, blood pressure measurements can be hindered by spastic
movements and contractures in upper limbs (van de Louw, Vorstenbosch, Vinck, Penning, & Evenhuis, 2009). In addition, it is not possible to use measurement methods such as direct questioning methods or self-report measures because of their limitations in communication skills and understanding (Petry, Maes & Vlaskamp, 2009). In 2016, the Dutch Healthcare Inspectorate (IGZ) performed an assessment of the quality of support for people with SPIMD at eight residential care facilities. One important quality-improving
recommendation regarding their physical health was that direct support staff need to work evidence-based, i.e., according to guidelines and instructions (Inspectie voor de Gezondheidszorg, 2017). However, there is no nationwide evidence-based guideline about the way daily caregivers should identify physical health problems such as dysphagia or constipation. Moreover, information is lacking about which measurement methods are currently used in practice for identifying physical health problems in adults with SPIMD and if these measurement methods are reliable and valid. As an example, in the Netherlands, direct support staff use a screening questionnaire, the ‘Signaleringslijst Verslikken’ (SV), for the identification of dysphagia in people with SPIMD. However, neither the reliability nor the validity of the SV within this specific population were determined. The use of measurements without known validity and reliability may result in outcomes that cannot be interpreted correctly. Unreliable and/or invalid measurements may lead to misguided decision-making and may induce inadequate treatment (Stoker, 2008) which may lead to aggravation of these health problems and development of secondary health problems (van Schrojenstein Lantman-de Valk & Walsh, 2008) and may also reduce a person's quality of life and life expectancy (Cooper, Melville, & Morrison, 2004; May & Kennedy, 2010; McCarthy & O'Hara, 2011). In view of the serious consequences of physical health problems in persons with SPIMD, early adequate identification is important in order to improve or maintain health and the quality of life (Kerr et al., 2003; Robertson, Hatton, Emerson, & Baines, 2014).
Aims of this thesis
The general aim of this thesis was to gain insight into the prevalence and identification of physical health problems in adults with SPIMD.
The first part focusses on the prevalence of physical health problems and patterns in multimorbidity in people with SPIMD.
• The aim of the study in Chapter 2 is to determine the prevalence of various types of physical health problems in adults with SPIMD in the literature.
• The study in Chapter 3 is aimed at determining the prevalence of reported physical health problems in a sample of adults with SPIMD in medical records and care plans.
• The aim of the study Chapter 4 is to explore patterns of multimorbidity in adults with SPIMD, i.e., the common simultaneous occurrence of two physical health problems and the most common multimorbidity combination of five physical health problems.
The second part encompasses the measurement methods used in current practice for the identification of the physical health problems.
• The purpose of the study in Chapter 5 is to inventory measurement methods that are used in current practice for identifying physical health problems in adults with SPIMD and, furthermore, to review their reliability and validity in the literature.
occurrence of complications such as respiratory tract infections, reduce hospital admissions, and prevent premature death (Robertson et al., 2018).
Measurement methods for the identification of the physical health problems The identification of physical health problems is complex in people with SPIMD. They have difficulties in communicating the presence of a health problem because of their
unconventional way of communication. Instead of verbal communication, these individuals use body language, vocal sounds, and facial expressions to communicate (Petry, Maes, & Vlaskamp, 2005), and it is often only a change in their behaviour that gives an indication that they are experiencing a problem. This way of communication forms a barrier for daily caregivers in identifying physical health problems. Health problems with less visible signs and symptoms are especially easily overlooked (Zijlstra & Vlaskamp, 2005). As people with SPIMD are unable to report their problems in a
conventional way, it is important that daily caregivers, such as direct support staff, are aware of physical health problems that are common. A serious degree of suspicion is needed so that they will be attentive to signs and symptoms of these physical health problems. Therefore, daily caregivers require knowledge about which physical health problems are common in people with SPIMD and which co-occur. However, only limited scientific evidence exists regarding the prevalence of physical health problems in people with SPIMD. Studies reporting on their prevalence in this population focused only on a single or a limited number of particular health problems and not on the entire range of health issues (Gittins & Rose, 2008; Nagae et al., 2013; Ohwada & Nakayama, 2008; Ohwada, Nakayama, Nara, Tomono, & Yamanaka, 2006; van den Broek, Janssen, van Ramshorst, & Deen, 2006) or on patterns of co-occurring physical health problems. Therefore, there is insufficient knowledge regarding the entire range of common physical health problems in people with SPIMD and which health problems tend to occur together. Better understanding of the prevalence and the co-occurrence of common problems may lead to proactive prevention strategies including early identification of secondary physical health problems. This will help daily caregivers and other professionals to monitor people with SPIMD for common preventable or manageable physical health problems.
To monitor physical health problems, instruments with adequate psychometric properties are necessary. However, not all standard measurement methods for the identification of these problems are appropriate for people with SPIMD. The complex difficulties associated with the interrelatedness of the intellectual, motor disabilities, and physical health problems influences the measurement outcome (Nakken & Vlaskamp, 2007). For example, blood pressure measurements can be hindered by spastic
movements and contractures in upper limbs (van de Louw, Vorstenbosch, Vinck, Penning, & Evenhuis, 2009). In addition, it is not possible to use measurement methods such as direct questioning methods or self-report measures because of their limitations in communication skills and understanding (Petry, Maes & Vlaskamp, 2009). In 2016, the Dutch Healthcare Inspectorate (IGZ) performed an assessment of the quality of support for people with SPIMD at eight residential care facilities. One important quality-improving
recommendation regarding their physical health was that direct support staff need to work evidence-based, i.e., according to guidelines and instructions (Inspectie voor de Gezondheidszorg, 2017). However, there is no nationwide evidence-based guideline about the way daily caregivers should identify physical health problems such as dysphagia or constipation. Moreover, information is lacking about which measurement methods are currently used in practice for identifying physical health problems in adults with SPIMD and if these measurement methods are reliable and valid. As an example, in the Netherlands, direct support staff use a screening questionnaire, the ‘Signaleringslijst Verslikken’ (SV), for the identification of dysphagia in people with SPIMD. However, neither the reliability nor the validity of the SV within this specific population were determined. The use of measurements without known validity and reliability may result in outcomes that cannot be interpreted correctly. Unreliable and/or invalid measurements may lead to misguided decision-making and may induce inadequate treatment (Stoker, 2008) which may lead to aggravation of these health problems and development of secondary health problems (van Schrojenstein Lantman-de Valk & Walsh, 2008) and may also reduce a person's quality of life and life expectancy (Cooper, Melville, & Morrison, 2004; May & Kennedy, 2010; McCarthy & O'Hara, 2011). In view of the serious consequences of physical health problems in persons with SPIMD, early adequate identification is important in order to improve or maintain health and the quality of life (Kerr et al., 2003; Robertson, Hatton, Emerson, & Baines, 2014).
Aims of this thesis
The general aim of this thesis was to gain insight into the prevalence and identification of physical health problems in adults with SPIMD.
The first part focusses on the prevalence of physical health problems and patterns in multimorbidity in people with SPIMD.
• The aim of the study in Chapter 2 is to determine the prevalence of various types of physical health problems in adults with SPIMD in the literature.
• The study in Chapter 3 is aimed at determining the prevalence of reported physical health problems in a sample of adults with SPIMD in medical records and care plans.
• The aim of the study Chapter 4 is to explore patterns of multimorbidity in adults with SPIMD, i.e., the common simultaneous occurrence of two physical health problems and the most common multimorbidity combination of five physical health problems.
The second part encompasses the measurement methods used in current practice for the identification of the physical health problems.
• The purpose of the study in Chapter 5 is to inventory measurement methods that are used in current practice for identifying physical health problems in adults with SPIMD and, furthermore, to review their reliability and validity in the literature.
• The aim of the study presented in Chapter 6 is to examine the convergent validity of a Dutch Screening tool for dysphagia (Signaleringslijst Verslikken) in adults with SPIMD.
REFERENCES
Baxter, H., Lowe, K., Houston, H., Jones, G., Felce, D., & Kerr, M. (2006). Previously
unidentified morbidity in patients with intellectual disability. British Journal of General
Practice, 56(523), 93-98.
Chadwick, D. D., & Jolliffe, J. (2009). A descriptive investigation of dysphagia in adults with intellectual disabilities. Journal of Intellectual Disability Research, 53(1), 29- 43. doi: 10.1111/j.1365-2788.2008.01115.x
Cooper, S. A., Melville, C., & Morrison, J. (2004). People with intellectual disabilities.
British Medical Journal (Clinical Research Ed.), 329(7463), 414-415. doi:
10.1136/bmj.329.7463.414
de Veer, A. J., Bos, J. T., Niezen-de Boer, R. C., Bohmer, C. J., & Francke, A. L. (2008). Symptoms of gastroesophageal reflux disease in severely mentally retarded people: a systematic review. BioMed Central Gastroenterology, 8, 23. doi: 10.1186/1471-230X-8-23
Field, M.J., & Jette, A.M. (eds.). (2007). Chapter 5 Secondary Conditions and Aging with Disability, in The Future of Disability in America. Institute of Medicine (US)
Committee on Disability in America. Washington (DC): National Academies Press
(US). Available from: https://www.nap.edu/read/11898/chapter/7#139 Gittins, D., & Rose, N. (2008). An audit of adults with profound and multiple learning
disabilities within a West Midlands Community Health Trust - implications for service development. British Journal of Learning Disabilities, 36(1), 38-47. doi: 10.1111/j.1468-3156.2007.00480.x
Heslop, P., Blair, P. S., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2014). The confidential inquiry into premature deaths of people with intellectual disabilities in the UK: A population-based study. Lancet (London, England), 383(9920), 889-895. doi: 10.1016/S0140-6736(13)62026-7
Hosking, F. J., Carey, I. M., Shah, S. M., Harris, T., DeWilde, S., Beighton, S., & Cook, D. B. (2016). Mortality among adults with intellectual disability in England: Comparisons with the general population. American Journal of Public Health, 106(8), 1483– 1490. doi: 10.2105/AJPH.2016.303240
Inspectie voor de Gezondheidszorg. (2017). Ga voor goede zorg aan mensen met EMB:
het kán! Avaliable at
https://www.igj.nl/documenten/publicaties/2017/06/12/factsheet-ernstig-meervoudige-beperking
Kerr, A. M., McCulloch, D., Oliver, K., McLean, B., Coleman, E., Law, T…. Prescott, R. J. (2003). Medical needs of people with intellectual disability require regular reassessment, and the provision of client- and carer-held reports. Journal of
Intellectual Disability Research, 47(2), 134-145. doi: 10.1046/j.1365-
2788.2003.00453.x
Kiestra, T. (2005). De unieke handicap, referentiemodel voor meervoudige beperkingen. Vries: De Brink.
Kinnear, D., Morrison, J., Allan, L., Henderson, A., Smiley, E., & Cooper, S. A. (2018). Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: crosssectional study.
• The aim of the study presented in Chapter 6 is to examine the convergent validity of a Dutch Screening tool for dysphagia (Signaleringslijst Verslikken) in adults with SPIMD.
REFERENCES
Baxter, H., Lowe, K., Houston, H., Jones, G., Felce, D., & Kerr, M. (2006). Previously
unidentified morbidity in patients with intellectual disability. British Journal of General
Practice, 56(523), 93-98.
Chadwick, D. D., & Jolliffe, J. (2009). A descriptive investigation of dysphagia in adults with intellectual disabilities. Journal of Intellectual Disability Research, 53(1), 29- 43. doi: 10.1111/j.1365-2788.2008.01115.x
Cooper, S. A., Melville, C., & Morrison, J. (2004). People with intellectual disabilities.
British Medical Journal (Clinical Research Ed.), 329(7463), 414-415. doi:
10.1136/bmj.329.7463.414
de Veer, A. J., Bos, J. T., Niezen-de Boer, R. C., Bohmer, C. J., & Francke, A. L. (2008). Symptoms of gastroesophageal reflux disease in severely mentally retarded people: a systematic review. BioMed Central Gastroenterology, 8, 23. doi: 10.1186/1471-230X-8-23
Field, M.J., & Jette, A.M. (eds.). (2007). Chapter 5 Secondary Conditions and Aging with Disability, in The Future of Disability in America. Institute of Medicine (US)
Committee on Disability in America. Washington (DC): National Academies Press
(US). Available from: https://www.nap.edu/read/11898/chapter/7#139 Gittins, D., & Rose, N. (2008). An audit of adults with profound and multiple learning
disabilities within a West Midlands Community Health Trust - implications for service development. British Journal of Learning Disabilities, 36(1), 38-47. doi: 10.1111/j.1468-3156.2007.00480.x
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Kerr, A. M., McCulloch, D., Oliver, K., McLean, B., Coleman, E., Law, T…. Prescott, R. J. (2003). Medical needs of people with intellectual disability require regular reassessment, and the provision of client- and carer-held reports. Journal of
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Nagae, A., Kuwabara, A., Tozawa, K., Kumode, M., Takeuchi, Y., & Tanaka, K. (2013).
Enteral nutrition and antibiotic use increase the risk for vitamin K deficiency in patients with severe motor and intellectual disabilities. E-SPEN Journal, 8(2), 31-36. doi: 10.1016/j.clnme.2012.12.002
Nakken, H., & Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(2), 83-87. doi: 10.1111/j.1741-1130.2007.00104.x
May, M. E., & Kennedy, C. H. (2010). Health and problem behavior among people with intellectual disabilities. Behavior Analysis in Practice, 3(2), 4-12. doi:
10.1007/BF03391759
McCarthy, J., & O’Hara, J. (2011). Ill-health and intellectual disabilities. Current Opinion in
Psychiatry, 24(5), 382–386. doi: 10.1097/yco.0b013e3283476b21
Ohwada, H., & Nakayama, T. (2008). The distributions and correlates of serum albumin levels in institutionalised individuals with intellectual and/or motor disabilities.
British Journal of Nutrition, 100(6), 1291-1296. doi: 10.1017/S0007114508973827
Ohwada, H., Nakayama, T., Nara, N., Tomono, Y., & Yamanaka, K. (2006). An
epidemiological study on anemia among institutionalized people with intellectual and/or motor disability with special reference to its frequency, severity and predictors. BioMed Central Public Health, 6(1), 85. doi: 10.1186/1471-2458-6-85 Petry, K., & Maes, B. (2007). Description of the support needs of people with multiple
disabilities using the 2002 AAMR overview of literature. Educating and Training in
Developmental Disabilities, 42(2), 130–143.
Petry, K., Maes, B., & Vlaskamp, C. (2005). Domains of Quality of Life of People with Profound Multiple Disabilities: the Perspective of Parents and Direct Support Staff. Journal of Applied Research in Intellectual Disabilities, 18, 35-46. doi:
org/10.1111/j.1468-3148.2004.00209.x
Petry, K., Maes, B., & Vlaskamp, C. (2009). Measuring the quality of life of people with profound multiple disabilities using the QOL-PMD: First results. Research in
Developmental Disabilities, 30(6), 1394-1405. doi: 10.1016/j.ridd.2009.06.007
Robertson, J., Chadwick, D., Baines, S., Emerson, E., & Hatton, C. (2018). People with intellectual disabilities and dysphagia. Disability and Rehabilitation, 40(11), 1345- 1360. doi: 10.1080/09638288.2017.1297497
Robertson, J., Hatton, C., Emerson, E., & Baines, S. (2014). The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence.
Research in Developmental Disabilities, 35(10), 2450-2462. doi:
10.1016/j.ridd.2014.06.007
Stoker, M. R. (2008). Common errors in clinical measurement. Anaesthesia and Intensive
Care Medicine, 9(12), 553–558. doi: 10.1016/j.mpaic.2008.09.016
Sutton, J. P., & de Jong, G. (1998). Managed care and people with disabilities: Framing the issues. Archives of Physical Medicine and Rehabilitation, 79(10), 1312–1316. Traci, M. A., Seekins, T., Szalda-Petree, A., & Ravesloot, C. (2002). Assessing Secondary
Conditions Among Adults With Developmental Disabilities: A Preliminary Study.
Mental Retardation, 40(2), 119-131. doi: 10.1352/0047-6765
van den Broek, E. G. C., Janssen, C. G. C., Van Ramshorst, T., & Deen, L. (2006). Visual impairments in people with severe and profound multiple disabilities: An inventory of visual functioning. Journal of Intellectual Disability Research, 50(6), 470-475. doi: 10.1111/j.1365-2788.2006.00804.x
van de Louw J., Vorstenbosch R., Vinck L., Penning C. & Evenhuis H. (2009). Prevalence of hypertension in adults with intellectual disability in the Netherlands. Journal of
Intellectual Disability Research, 53(1), 78–84. doi: 10.1111/j.1365-
2788.2008.01130.x
van Schrojenstein Lantman-de Valk, H. M. J., & Walsh, P. N. (2008). Managing health problems in people with intellectual disabilities. British Medical Journal, 337 (a2507), 1408-1412. doi: 10.1136/bmj.a2507
WHO. World Health Organization (2001). International classification of functioning,
disability and health: ICF. Geneva: World Health Organisation
WHO. World Health Organization (1948). Preamble to the Constitution of the World
Health Organization as adopted by the International Health Conference, New York, 19–22 June 1946 and entered into force on 7 April 1948. Geneva, Switzerland:
World Health Organization.
Zijlstra, H. P., & Vlaskamp, C. (2005). The impact of medical conditions on the support of children with profound intellectual and multiple disabilities. Journal of Applied
Research in Intellectual Disabilities, 18(2), 151-161. doi: 10.1111/j.1468-
Nagae, A., Kuwabara, A., Tozawa, K., Kumode, M., Takeuchi, Y., & Tanaka, K. (2013).
Enteral nutrition and antibiotic use increase the risk for vitamin K deficiency in patients with severe motor and intellectual disabilities. E-SPEN Journal, 8(2), 31-36. doi: 10.1016/j.clnme.2012.12.002
Nakken, H., & Vlaskamp, C. (2007). A need for a taxonomy for profound intellectual and multiple disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(2), 83-87. doi: 10.1111/j.1741-1130.2007.00104.x
May, M. E., & Kennedy, C. H. (2010). Health and problem behavior among people with intellectual disabilities. Behavior Analysis in Practice, 3(2), 4-12. doi:
10.1007/BF03391759
McCarthy, J., & O’Hara, J. (2011). Ill-health and intellectual disabilities. Current Opinion in
Psychiatry, 24(5), 382–386. doi: 10.1097/yco.0b013e3283476b21
Ohwada, H., & Nakayama, T. (2008). The distributions and correlates of serum albumin levels in institutionalised individuals with intellectual and/or motor disabilities.
British Journal of Nutrition, 100(6), 1291-1296. doi: 10.1017/S0007114508973827
Ohwada, H., Nakayama, T., Nara, N., Tomono, Y., & Yamanaka, K. (2006). An
epidemiological study on anemia among institutionalized people with intellectual and/or motor disability with special reference to its frequency, severity and predictors. BioMed Central Public Health, 6(1), 85. doi: 10.1186/1471-2458-6-85 Petry, K., & Maes, B. (2007). Description of the support needs of people with multiple
disabilities using the 2002 AAMR overview of literature. Educating and Training in
Developmental Disabilities, 42(2), 130–143.
Petry, K., Maes, B., & Vlaskamp, C. (2005). Domains of Quality of Life of People with Profound Multiple Disabilities: the Perspective of Parents and Direct Support Staff. Journal of Applied Research in Intellectual Disabilities, 18, 35-46. doi:
org/10.1111/j.1468-3148.2004.00209.x
Petry, K., Maes, B., & Vlaskamp, C. (2009). Measuring the quality of life of people with profound multiple disabilities using the QOL-PMD: First results. Research in
Developmental Disabilities, 30(6), 1394-1405. doi: 10.1016/j.ridd.2009.06.007
Robertson, J., Chadwick, D., Baines, S., Emerson, E., & Hatton, C. (2018). People with intellectual disabilities and dysphagia. Disability and Rehabilitation, 40(11), 1345- 1360. doi: 10.1080/09638288.2017.1297497
Robertson, J., Hatton, C., Emerson, E., & Baines, S. (2014). The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence.
Research in Developmental Disabilities, 35(10), 2450-2462. doi:
10.1016/j.ridd.2014.06.007
Stoker, M. R. (2008). Common errors in clinical measurement. Anaesthesia and Intensive
Care Medicine, 9(12), 553–558. doi: 10.1016/j.mpaic.2008.09.016
Sutton, J. P., & de Jong, G. (1998). Managed care and people with disabilities: Framing the issues. Archives of Physical Medicine and Rehabilitation, 79(10), 1312–1316. Traci, M. A., Seekins, T., Szalda-Petree, A., & Ravesloot, C. (2002). Assessing Secondary
Conditions Among Adults With Developmental Disabilities: A Preliminary Study.
Mental Retardation, 40(2), 119-131. doi: 10.1352/0047-6765
van den Broek, E. G. C., Janssen, C. G. C., Van Ramshorst, T., & Deen, L. (2006). Visual impairments in people with severe and profound multiple disabilities: An inventory of visual functioning. Journal of Intellectual Disability Research, 50(6), 470-475. doi: 10.1111/j.1365-2788.2006.00804.x
van de Louw J., Vorstenbosch R., Vinck L., Penning C. & Evenhuis H. (2009). Prevalence of hypertension in adults with intellectual disability in the Netherlands. Journal of
Intellectual Disability Research, 53(1), 78–84. doi: 10.1111/j.1365-
2788.2008.01130.x
van Schrojenstein Lantman-de Valk, H. M. J., & Walsh, P. N. (2008). Managing health problems in people with intellectual disabilities. British Medical Journal, 337 (a2507), 1408-1412. doi: 10.1136/bmj.a2507
WHO. World Health Organization (2001). International classification of functioning,
disability and health: ICF. Geneva: World Health Organisation
WHO. World Health Organization (1948). Preamble to the Constitution of the World
Health Organization as adopted by the International Health Conference, New York, 19–22 June 1946 and entered into force on 7 April 1948. Geneva, Switzerland:
World Health Organization.
Zijlstra, H. P., & Vlaskamp, C. (2005). The impact of medical conditions on the support of children with profound intellectual and multiple disabilities. Journal of Applied
Research in Intellectual Disabilities, 18(2), 151-161. doi: 10.1111/j.1468-
CHAPTER
2
Physical health issues in adults with severe
or profound intellectual and motor
disabilities: a systematic review of
cross-sectional studies
E.A. van Timmeren C.P. van der Schans A.A.J. van der Putten W.P. Krijnen
H.A. Steenbergen
H.M.J. van Schrojenstein Lantman-de Valk A. Waninge
CHAPTER
2
Physical health issues in adults with severe
or profound intellectual and motor
disabilities: a systematic review of
cross-sectional studies
E.A. van Timmeren C.P. van der Schans A.A.J. van der Putten W.P. Krijnen
H.A. Steenbergen
H.M.J. van Schrojenstein Lantman-de Valk A. Waninge
ABSTRACT
Background People with severe or profound intellectual and motor disabilities (SPIMD)
encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain
damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first of all, knowledge regarding the prevalence of physical health problems is necessary. The aim of this systematic review was to methodically review
cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD.
Methods MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science were
searched for studies published between 2004 and 2015. The quality of the incorporated studies was assessed utilising an adjusted ‘risk of bias tool’ for cross-sectional studies. To estimate the prevalence of the health problems, the proportion and corresponding confidence interval were calculated. A random effect meta-analysis was performed when at least three studies on a specific health problem were available.
Results In total, 20 studies were included and analysed. In the meta-analysis, a
homogeneous prevalence rate of 70% (95% CI: 65–75) was determined for epilepsy. Heterogeneous results were ascertained in the meta-analysis for pulmonary/respiratory problems, hearing problems, dysphagia, reflux disease and visual problems. For the health problems identified in two studies or in a single study, the degree of evidence was low. As expected, higher prevalence rates were found in the current review compared with people with ID for visual problems, epilepsy and spasticity.
Conclusion This review provides an overview of the current state of the art research on
the prevalence of health problems in adults with SPIMD. There is a substantial need for comprehensive epidemiological data in order to find clusters of health problems specific for people with SPIMD. This would provide insight into the excess morbidity associated with SPIMD.
INTRODUCTION
People experiencing severe or profound intellectual and motor disabilities (SPIMD) are more likely to have a number of specific health needs; therefore, they represent a vulnerable group. This population has two key characteristics: (1) severe or profound intellectual disability (ID) and (2) profound motor disability manifesting in an inability to move independently. The majority of people with SPIMD additionally experience sensory impairments and physical health problems (Nakken & Vlaskamp, 2007). Research in the Netherlands indicates a population size of a maximum of 9639 adults with SPIMD (Vugteveen, van der Putten, & Vlaskamp, 2014).
People with SPIMD encounter several risk factors associated with higher mortality rates such as a lower IQ, non-ambulation, poor motor skills, inability to feed oneself, poor communication and self-help limitations. They are likely to gradually have different patterns of health problems than those with a milder ID (Sutherland, Couch, & Iacono, 2002; Hayden, 1998) and suffer more often from multimorbidity (Hermans & Evenhuis, 2014). Furthermore, they frequently experience a cluster of health problems related to the severe brain damage/dysfunction such as dysphagia, epilepsy, spasticity, reflux disease, hearing impairment and visual impairment. Moreover, they have an increased risk for polypharmacy and secondary health problems (Hermans & Evenhuis, 2014; Van Schrojenstein Lantman-de Valk & Walsh, 2008). For example, undetected constipation may cause severe problems such as ileus (Van Schrojenstein Lantman-de Valk & Walsh, 2008), and anticonvulsant medication is associated with osteoporosis (Mergler et al., 2009).
Early detection of physical health problems is important in order to improve or maintain health and quality of life (Kerr et al., 2003; Robertson, Hatton, Emerson, & Baines, 2014). If health problems remain undiagnosed and untreated, secondary health complications can occur (McCarthy & O’Hara, 2011; Cooper,Melville, & Morrison, 2004; May & Kennedy, 2010); therefore, it is important to identify health issues in time. However, little is known about the prevalence of physical health problems in the SPIMD population.
The aim of this systematic review, therefore, is to methodically review cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD.
METHODS
Information sources
The Cochrane Library was initially searched in order to confirm that a systematic review did not already exist on physical health issues in adults with SPIMD. Subsequently, a systematic literature search was conducted in the databases of MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science. Terms were searched as text words (in title, abstract) and key words that have been indexed by the databases. In addition, the reference lists of the included articles were screened.
ABSTRACT
Background People with severe or profound intellectual and motor disabilities (SPIMD)
encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain
damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first of all, knowledge regarding the prevalence of physical health problems is necessary. The aim of this systematic review was to methodically review
cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD.
Methods MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science were
searched for studies published between 2004 and 2015. The quality of the incorporated studies was assessed utilising an adjusted ‘risk of bias tool’ for cross-sectional studies. To estimate the prevalence of the health problems, the proportion and corresponding confidence interval were calculated. A random effect meta-analysis was performed when at least three studies on a specific health problem were available.
Results In total, 20 studies were included and analysed. In the meta-analysis, a
homogeneous prevalence rate of 70% (95% CI: 65–75) was determined for epilepsy. Heterogeneous results were ascertained in the meta-analysis for pulmonary/respiratory problems, hearing problems, dysphagia, reflux disease and visual problems. For the health problems identified in two studies or in a single study, the degree of evidence was low. As expected, higher prevalence rates were found in the current review compared with people with ID for visual problems, epilepsy and spasticity.
Conclusion This review provides an overview of the current state of the art research on
the prevalence of health problems in adults with SPIMD. There is a substantial need for comprehensive epidemiological data in order to find clusters of health problems specific for people with SPIMD. This would provide insight into the excess morbidity associated with SPIMD.
INTRODUCTION
People experiencing severe or profound intellectual and motor disabilities (SPIMD) are more likely to have a number of specific health needs; therefore, they represent a vulnerable group. This population has two key characteristics: (1) severe or profound intellectual disability (ID) and (2) profound motor disability manifesting in an inability to move independently. The majority of people with SPIMD additionally experience sensory impairments and physical health problems (Nakken & Vlaskamp, 2007). Research in the Netherlands indicates a population size of a maximum of 9639 adults with SPIMD (Vugteveen, van der Putten, & Vlaskamp, 2014).
People with SPIMD encounter several risk factors associated with higher mortality rates such as a lower IQ, non-ambulation, poor motor skills, inability to feed oneself, poor communication and self-help limitations. They are likely to gradually have different patterns of health problems than those with a milder ID (Sutherland, Couch, & Iacono, 2002; Hayden, 1998) and suffer more often from multimorbidity (Hermans & Evenhuis, 2014). Furthermore, they frequently experience a cluster of health problems related to the severe brain damage/dysfunction such as dysphagia, epilepsy, spasticity, reflux disease, hearing impairment and visual impairment. Moreover, they have an increased risk for polypharmacy and secondary health problems (Hermans & Evenhuis, 2014; Van Schrojenstein Lantman-de Valk & Walsh, 2008). For example, undetected constipation may cause severe problems such as ileus (Van Schrojenstein Lantman-de Valk & Walsh, 2008), and anticonvulsant medication is associated with osteoporosis (Mergler et al., 2009).
Early detection of physical health problems is important in order to improve or maintain health and quality of life (Kerr et al., 2003; Robertson, Hatton, Emerson, & Baines, 2014). If health problems remain undiagnosed and untreated, secondary health complications can occur (McCarthy & O’Hara, 2011; Cooper,Melville, & Morrison, 2004; May & Kennedy, 2010); therefore, it is important to identify health issues in time. However, little is known about the prevalence of physical health problems in the SPIMD population.
The aim of this systematic review, therefore, is to methodically review cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD.
METHODS
Information sources
The Cochrane Library was initially searched in order to confirm that a systematic review did not already exist on physical health issues in adults with SPIMD. Subsequently, a systematic literature search was conducted in the databases of MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science. Terms were searched as text words (in title, abstract) and key words that have been indexed by the databases. In addition, the reference lists of the included articles were screened.
Search strategy
To ensure capturing all potentially relevant studies, a broad range of search terms was employed. The search terms of profound intellectual and motor disabilities (PIMD) were extended to SPIMD as there is no standardised instrument to assess cognitive
functioning in a person who also has severe or profound motor and sensory disabilities (Nakken & Vlaskamp, 2007).
Along with searching for studies on individuals with SPIMD, studies regarding individuals with severe or profound intellectual disabilities (SPID) were also examined because most of them have an increased frequency of additional impairments. Furthermore, syndrome-specific terms such as Rett Syndrome were utilised.
To provide a broad overview of all physical health problems, physical health related terms were used in preference to specific health problem terms.
Selection criteria for studies
Criteria for inclusion in this review included cross-sectional studies, peer-reviewed articles written in English, published within the last 10 years (between January 2004 and
December 2015). Furthermore, participants in the studies were required to be adults with SPID or SPIMD. For a comprehensive overview, studies involving both children and adults and all physical health problems were included. As the focus of the study was on physical health problems, we excluded mental and behavioural disorders such as sleep issues and challenging behaviours. For studies involving adults with a varying degree of ID, a separate analysis of the data on physical health problems for people with SPID was necessary for inclusion. The selection process was performed by the first author. The title and abstract of all of the obtained articles were screened utilising the selection criteria. A second reviewer (A. W.) independently and randomly screened 10% of the titles and abstracts, which yielded an inter-rater agreement of 100%.
Data extraction
Two reviewers (E. A. v. T. and H. A. S.) independently analysed the study characteristics utilising a protocol for data extraction, which was developed specifically for the review and included the following items:
1 Study design
2 Population/participants related to the review area a Inclusion/exclusion criteria, setting, country b Number of participants related to the review area c Patients characteristics (age, gender)
d Non-response/non-participants 3 Health problem related to the review area
a Definition of health problem b Measurement of health problem c Prevalence rates of health problems
4 Specific issues raised by the study that are relevant to the review area
Discrepancies, for example, in the definition of a health problem or in the total number of participants, were resolved with discussions between the two reviewers.
Assessment of study quality
Because of the absence of standard criteria for the assessment of quality of the cross-sectional studies, an existing assessment tool (Hoy et al., 2012) for determining risk of bias was modified whereby the criteria of the tool and the scores were adapted to the focus of this current review. For external validity (EV), the risk of bias was assessed for the representativeness of the study group with the target group of this review, i.e. people with SPIMD. For internal validity (IV), the method of measurement and definition of the psychical health problem was evaluated. In the event that the physical health problems were not the primary focus of the included study, the quality assessment for IV was limited to the elements of the study that were relevant to the physical health problems related to the review area. The tool contains four items for EV and five items for IV. For the total score, the number of ‘YES’ judgements (i.e. risk of bias) were compiled. A total score of 0 to 1 for EV was considered as a high risk of bias, scores of 2 to 3 as a moderate risk of bias and scores of 4 as a low risk of bias. High risk of bias for internal validity was indicated by total scores of 0 to 1, a moderate risk of bias by scores of 2 to 3 and a low risk of bias by scores of 4 to 5. The two reviewers reached 100% consensus on the total number of quality points for each study.
The protocol for quality assessment included the following items: External validity
1 Target population representative for the SPIMD group 2 Sampling frame representative for target population 3 Selection of the sample
4 Likelihood of non-response Internal validity
5 Data collection
6 Definition health problem 7 Measurement health problem
8 Mode of data collection used for all subjects 9 Appropriate numerator(s) and denominator(s)
Search strategy
To ensure capturing all potentially relevant studies, a broad range of search terms was employed. The search terms of profound intellectual and motor disabilities (PIMD) were extended to SPIMD as there is no standardised instrument to assess cognitive
functioning in a person who also has severe or profound motor and sensory disabilities (Nakken & Vlaskamp, 2007).
Along with searching for studies on individuals with SPIMD, studies regarding individuals with severe or profound intellectual disabilities (SPID) were also examined because most of them have an increased frequency of additional impairments. Furthermore, syndrome-specific terms such as Rett Syndrome were utilised.
To provide a broad overview of all physical health problems, physical health related terms were used in preference to specific health problem terms.
Selection criteria for studies
Criteria for inclusion in this review included cross-sectional studies, peer-reviewed articles written in English, published within the last 10 years (between January 2004 and
December 2015). Furthermore, participants in the studies were required to be adults with SPID or SPIMD. For a comprehensive overview, studies involving both children and adults and all physical health problems were included. As the focus of the study was on physical health problems, we excluded mental and behavioural disorders such as sleep issues and challenging behaviours. For studies involving adults with a varying degree of ID, a separate analysis of the data on physical health problems for people with SPID was necessary for inclusion. The selection process was performed by the first author. The title and abstract of all of the obtained articles were screened utilising the selection criteria. A second reviewer (A. W.) independently and randomly screened 10% of the titles and abstracts, which yielded an inter-rater agreement of 100%.
Data extraction
Two reviewers (E. A. v. T. and H. A. S.) independently analysed the study characteristics utilising a protocol for data extraction, which was developed specifically for the review and included the following items:
1 Study design
2 Population/participants related to the review area a Inclusion/exclusion criteria, setting, country b Number of participants related to the review area c Patients characteristics (age, gender)
d Non-response/non-participants 3 Health problem related to the review area
a Definition of health problem b Measurement of health problem c Prevalence rates of health problems
4 Specific issues raised by the study that are relevant to the review area
Discrepancies, for example, in the definition of a health problem or in the total number of participants, were resolved with discussions between the two reviewers.
Assessment of study quality
Because of the absence of standard criteria for the assessment of quality of the cross-sectional studies, an existing assessment tool (Hoy et al., 2012) for determining risk of bias was modified whereby the criteria of the tool and the scores were adapted to the focus of this current review. For external validity (EV), the risk of bias was assessed for the representativeness of the study group with the target group of this review, i.e. people with SPIMD. For internal validity (IV), the method of measurement and definition of the psychical health problem was evaluated. In the event that the physical health problems were not the primary focus of the included study, the quality assessment for IV was limited to the elements of the study that were relevant to the physical health problems related to the review area. The tool contains four items for EV and five items for IV. For the total score, the number of ‘YES’ judgements (i.e. risk of bias) were compiled. A total score of 0 to 1 for EV was considered as a high risk of bias, scores of 2 to 3 as a moderate risk of bias and scores of 4 as a low risk of bias. High risk of bias for internal validity was indicated by total scores of 0 to 1, a moderate risk of bias by scores of 2 to 3 and a low risk of bias by scores of 4 to 5. The two reviewers reached 100% consensus on the total number of quality points for each study.
The protocol for quality assessment included the following items: External validity
1 Target population representative for the SPIMD group 2 Sampling frame representative for target population 3 Selection of the sample
4 Likelihood of non-response Internal validity
5 Data collection
6 Definition health problem 7 Measurement health problem
8 Mode of data collection used for all subjects 9 Appropriate numerator(s) and denominator(s)
Data analyses
For this review, the prevalence rate of the physical health problems were classified according to the categories of the tenth revision of the International Statistical
Classification of Diseases (ICD-10). Prevalence data indicate the number of people with the health problem at a specified time. Therefore, proportion and relative frequency were notated and, if necessary, calculated. A 95% confidence interval (CI) was determined for each health problem using the Confidence Interval Calculator for Proportions (McCallum Layton n.d.). A narrow 95% CI indicates results that are more accurate based on the sample size.
A random effect meta-analysis (Viechtbauer, 2010) on the proportions of the individual studies was performed to assess the prevalence of the health problem if three or more studies concerning the same health problem while using the same focus and design were identified. Forest plots were used to visualise meta-analysis results, and the degree of heterogeneity was described by the I2 and Q statistic. The presence of
heterogeneity was tested utilising the Q statistic. RESULTS
Process of study selection
The database search yielded 9319 results. After eliminating the duplicates, 7034 results remained. A total of 57 records were identified as being potentially relevant for this review.
After a full text review, 16 articles satisfied the eligibility criteria and were subsequently included. In addition, after screening the reference lists of the included articles and using the same selection criteria, another four studies were added. A total of 20 studies met the inclusion criteria. Figure 1 outlines the study selection and lists the explanations for excluding the other studies.
Figure 1. Flowchart of study selection process
Description of the studies
The number of participants ranged from 34 to 562. In seven studies, both adults and children (age 0–82 years) were included (van der Heide, van der Putten, van den Berg, Taxis, & Vlaskamp, 2009; Petry, Maes, & Vlaskamp, 2009; Fellinger, Holzinger, Dirmhirn, van Dijk, & Goldberg, 2009; Van den Broek, Janssen, van Ramshorst, & Deen 2006; Poppes, van der Putten, & Vlaskamp, 2010; van den Akker, Maaskant, & van der
Meijden, 2006; McGuire, Daly, & Smyth, 2010). Eight studies included a study population that was representative for SPIMD (Gittins & Rose, 2008; Nagae et al.,2013; Ohwada, Nakayama, Nara, Tomono, & Yamanaka, 2006; Ohwada & Nakayama, 2008; van den Broek et al., 2006; Poppes et al., 2010; van der Heide et al., 2009; Petry et al., 2009). All of the studies included both male and female. One study analysed data for people with SPID and SPIMD (De Waal, Tinselboer, Evenhuis, & Penning, 2009).
Table 1 contains the characteristics and risk of bias for each study. The studies are listed in order from low to high risk of bias for IV, i.e. the method of measurement and definition of the psychical health problem.
