Physical health in adults with severe or profound intellectual and motor disabilities
van Timmeren, Everdina Aafke
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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
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) General introduction
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.
Chapter 1
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
General introduction
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.
British Medical Journal, Open, 8, e018292. doi:10.1136/bmjopen-2017-018292
Chapter 1
• 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.
General introduction
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.
British Medical Journal, Open, 8, e018292. doi:10.1136/bmjopen-2017-018292
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.
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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
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WHO. World Health Organization (1948). Preamble to the Constitution of the World
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World Health Organization.
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3148.2005.00244.x
Chapter 1
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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
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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
General introduction
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-
3148.2005.00244.x
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
