The Relationship of Cerebral Palsy Comorbid ...

Chapter 13

The Relationship of Cerebral Palsy Comorbid Conditions with Participation and Quality of Life Marta Badia, Begoña Orgaz, Inmaculada Riquelme and Pedro Montoya

Introduction

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Recent advances in the study of cerebral palsy (CP) have led to a very relevant change in our knowledge of this disability, which is currently the most frequent cause of physical disability in childhood. The new approach, in which the World Health Organization (WHO) has actively participated, focuses more on health components than on the consequences of the disease. From this perspective, disability is a social construct, implying an interaction between the person and the environment, so that special emphasis is placed on the promotion of quality of life (QOL) and participation in the community of people with disabilities. This chapter will present, on the one hand, the conceptual model proposed for the study of CP, the current definition and classification system, and data about the epidemiology and incidence of the comorbidities. It will also address the importance of participation and QOL in the assessment of the personal outcomes of intervention procedures as well as the role played by the diverse comorbidities associated with CP. To conclude, it will analyze the effects of these changes on our comprehension of CP in order to

M. Badia ( ) Institute on Community Integration (INICO), Department of Personality, Assessment & Psychological Treatments, University of Salamanca, Salamanca, Spain e-mail: [email protected] B. Orgaz Institute on Community Integration (INICO), Department of Basic Psychology, Psychobiology, and Methodology of Behavior Sciences, University of Salamanca, Salamanca, Spain I. Riquelme Research Institute on Health Sciences—IUNICS, Department of Physiotherapy, University of the Balearic Islands, Balearic Islands, Spain P. Montoya Research Institute on Health Sciences—IUNICS, University of the Balearic Islands, Balearic Islands, Spain © Springer International Publishing Switzerland 2015 J. L. Matson, M. L. Matson (eds.), Comorbid Conditions in Individuals with Intellectual Disabilities, Autism and Child Psychopathology Series, DOI 10.1007/978-3-319-15437-4_10

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Book ID: 322066_1_En Chapter ID:13 Dispatch Date: 23/02/2015 Proof No: 1

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plan and organize support service strategies promoting the participation and QOL of people with CP.

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Conceptualizing and Applying the Human Functioning Model to Cerebral Palsy

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A Biopsychosocial Model of Cerebral Palsy

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Progress in our comprehension of CP has been made possible as a result of the current biopsychosocial conception of disability, emphasizing the relevance of the environment in participation and QOL. The model of human functioning of the International Classification of Functioning, Disability and Health ([ICF] 2001) includes contextual factors and participation as essential dimensions. They, in turn, include the environmental and personal factors that may affect a person’s health. The environmental factors constitute the physical, social, and attitudinal environment in which people live and develop, whereas personal factors are the particular background of a person’s life and lifestyle (e.g., sex, age, education, profession, and socioeconomic characteristics). However, according to the ICF, (2001) participation is defined as the act of engaging in a life situation. Some examples of life situations in which people usually participate include relations with family and friends, domestic life, learning and applying knowledge, and community, social, and civic life, including leisure activities. Hence, the biopsychosocial model of disability, on the one hand, considers participation as an essential dimension related to the person’s functioning in society and, on the other, it acknowledges that people with a chronic health condition can enjoy a satisfactory life (Rosenbaum 2008). This perspective underlines the relevance of environment for participation and to achieve optimal levels of QOL in people with CP (Colver 2005; see Fig. 13.1). The ICF (2001) defines the environment as the physical, social, and attitudinal factors that either facilitate or hinder participation. Thus, environmental barriers such as, for example, the lack of adapted transportation or negative attitudes towards children with CP can negatively affect their participation and QOL. Actually, it is important to know not only the negative aspects (barriers) of the environment, because they can worsen the disability and the levels of dependence, but also the positive environmental factors (facilitators), which, when mobilized, can increase levels of participation in the community, in school, or at home.

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Definition of Cerebral Palsy from a Biopsychosocial Perspective

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Recent advances in the study of CP have led to a very relevant change in our knowledge of this disability. CP has traditionally been considered as a motor disorder, and this conception has marked both research and intervention, which


13 The Relationship of Cerebral Palsy Comorbid Conditions with Participation … 

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            

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       

      

                        

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has mainly focused on the motor consequences produced by early brain damage. However, the current perspective of the study of CP, based on an ecological and biopsychosocial model of disability, is fostering important changes in intervention procedures with a clear will to go from an approach focused on persons and limitations to a perspective oriented towards promoting the functional capacities of people in interaction with their environment (home, school, work, community, etc.). CP is a developmental disability that includes different disorders from heterogeneous etiologies, types, and severity. The motor disorders of posture and movement are permanent and not progressive, although changing clinical patterns can manifest, leading to limitations/restrictions of activity (e.g., walking, manipulation, and speech). In addition, CP is usually accompanied by other disorders (e.g., pain, fatigue, and epilepsy), comorbidities to which special attention must be paid. Rosenbaum et al. (2007) propose the following definition:

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Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems (p. 9).

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The strategy adopted for the classification of CP is that described in the Reference and Training Manual of Surveillance of Cerebral Palsy in Europe (SCPE R&TM), available at the website of SCPE (http://www.scpenetwork.eu/en/rtm/), which proposes a classification of CP with four components: (1) motor abnormalities, (2) associated deficiencies, (3) anatomic and radiological findings, and (4) etiology and time of onset of the alteration (see Table 13.1).

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Components of the classification of cerebral palsy (CP) of the surveillance of Cerebral Palsy in Europe Motor disorders

Nature and typology of the motor disorder

Spastic CP (bilateral or unilateral) Dyskinetic CP (dystonic or choreoathetosis CP) Ataxic CP

Associated disorders

Functional motor skills

Limited activity

Presence or absence

Epilepsy

Impact on functional skills

Intellectual disability Sensory disorders

Anatomic and radiological findings

Anatomic distribution

Affected body parts

Radiological findings

Cortical abnormalities, ventricular elongation, loss of white matter…

Etiology and chronology

Clearly identified cause

Brain damage, meningitis, cerebral malformations…

Time of onset of the injury

Event that occurred before the affected function developed

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Activity Limitations

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The current definition of CP within the conceptual biopsychosocial model considers the motor disorder as the cause of the activity limitations. The ICF (2001) refers to activity as the execution of a task or action by a person, and defines limitation of activity as the difficulties a person may have performing that activity. However, one of the problems of the ICF is that it does not present a clear and exclusive division between activity and participation (defined as the act of engaging in a life situation). More specifically, the ICF only provides one classification system of the life areas of the components of activity and participation. Thereby, to solve this problem, the ICF offers four different ways classification forms, leaving the decision to each user of which option to choose in order to differentiate activities from participation. However, since the publication of the ICF, many studies have appeared that are oriented towards achieving a clearer conceptualization of these two components (Badley 2008; Nordenfelt 2003). Thus, Whiteneck and Dijkers (2009) propose considering activity as referring to the performance at the individual level, and participation when referring to outcomes at the social level. Following this suggestion, activities are physical and cognitive tasks carried out by people, whereas participation is the performance of the social role as a member of society. Thus, the application of the biopsychosocial model of disability in CP contributes to the establishment of individualized functional profiles that become a central aspect in the design and development of intervention programs. Hence, the elaboration of adequate instruments to assess the functional motor skills of people with CP is becoming a priority goal, and there are currently various available measures (see Table 13.2). Although it is important to take activity limitations into account, the way in which motor disorders affect participation—an issue that will be addressed below—should also be considered.

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Measures to assess functional capacity in cerebral palsy (CP) Instrument

Authors

Purpose of measure

Content

Gross motor function classification system (GMFCS)

Palisano et al. (1997)

Describes the motor performance of children with CP on the basis of their functional abilities and their need for assistive technology and wheeled mobility

Functional levels range from I (independent gross motor function with few limitations) to V (complete dependence for all motor activities)

Manual ability classification system (MACS)

Eliasson et al. (2006)

Describes how children with CP use their hands to manipulate objects in daily activities

It has 5 levels: Level I represents optimal manual skill, and Level V indicates lack of any active function in the hands

Drooling impact scale (DIS)

Reid et al. (2010)

Assesses the effect of interventions to control saliva in the drooling of children with developmental disabilities

It consists of a series of ten items, each one measured on scale ranging from 1 to 10. The total individual scores of the items are calculated to assess the severity and frequency of drooling. A score of 9 or 10 is classified as an excellent to very good reduction, 7 to 8 as a good reduction, and less than 5 as deterioration

Viking speech scale (VSS)

Pennington et al. (2013)

Assesses the functioning of speech in children with CP in daily life

It has 4 levels: no speech disorder (Level 1), imprecise speech but usually comprehensible for strangers (Level II), unclear speech, normally not understood by people who are not familiar or out of context (Level III), incomprehensible speech (Level IV)

Communication function classification system (CFCS)

Hidecker et al. Assesses the capac(2011) ity for communication in daily life situations

It classifies communication in five levels according to the efficacy of current communication: Level I indicates that the emitter and receiver is efficacious with known and unknown interlocutors; Level V indicates that the emitter and receiver is rarely efficacious with known interlocutors

Functional Communication Classification System (FCSS)

The Center for Cerebral Palsy and Cerebral Play League of Queensland

It has five levels, where Level I indicates a total absence of support to interact, and Level V reflects complete assistance to communicate

Assesses the way the child with CP communicates in daily life situations


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Comorbidities in Cerebral Palsy

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During the past few years, there has been an increase in the incidence and prevalence of CP, mainly due to the improved documentation of cases recorded in the national registers. Thus, Odding et al. (2006), in a study of a network of CP registers in 14 centers of 8 European countries, called Surveillance of Cerebral Palsy in Europe (SCPE), report the epidemiological data of CP, estimating the prevalence at 2–2.5 per 1000 live newborns. Likewise, the data indicate that each year, about 10,000 new cases of CP are diagnosed in the European Union. Early brain damage always has motor sequelae but, in many people with CP, there are also other deficiencies that can interfere with their ability to function in daily life and that provoke greater limitations of activities than the motor deficiencies themselves. Baxter (2013) note the relevance of paying more attention to the comorbidities associated with CP because they can have a negative impact on the participation and QOL of children, adolescents, and adults with CP. According to Odding et al. (2006), depending on the type of CP, between 25 and 80 % of people with CP present associated deficiencies.

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Somatosensory Deficits

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In addition to motor sequelae, people with CP can manifest somatosensory alterations, among which abnormal tactile perception and altered pain sensitivity are noteworthy. For example, people with CP have been observed to present worse levels of tactile discrimination, stereognosis, and proprioception (Cooper et al. 1995; McLaughlin et al. 2005; Inmaculada Riquelme and Pedro Montoya 2010; Sanger and Kukke 2007; Wingert et al. 2009), in addition to higher levels of pain than healthy children (Doralp and Bartlett 2010; Malone and Vogtle 2010; Parkinson et al. 2010; Riquelme et al. 2011; Riquelme and Montoya 2010; Vogtle 2009). These somatosensory deficits could be due either to injuries caused by brain damage in the cortical and subcortical sensory areas or to secondary neurophysiological mechanisms provoked by motor limitation (e.g., aberrant feedback of the somatosensory afferences) and which reduce the exploration opportunities of children with CP (Clayton et al. 2003). In this sense, recent neuroimaging studies have revealed alterations in the white matter connecting the motor and somatosensory cortices, suggesting that the motor problems of people with CP could reflect a disruption of both types of connections (Hoon et al. 2002; Hoon et al. 2009; Thomas et al. 2005). Moreover, the developing nervous system is very sensitive to postnatal neural activity, requiring defined patterns of afferences for a normal synaptic organization to occur. Thus, for example, Zwicker et al. (2013) found a relation between neonatal pain and the abnormal development of the corticospinal tract. The patterns of stereotyped and monotonous movements at neonatal age could also produce abnormal afferent feedback that would alter cortical reorganization, producing deficits in somatosensory processing (Coq et al. 2008). Finally, reduced tactile sensitivity



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has been related to increased pain sensitivity in people with CP (Riquelme and Montoya 2010), suggesting a potential link between abnormal somatosensory experiences in early infancy and long-term changes in somatosensory processing and pain (Schmelzle-Lubiecki et al. 2007).

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Pain in Individuals with Cerebral Palsy

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People with CP suffer frequent pain at any age, in multiple locations, between moderate and severe intensity. The levels of pain prevalence in adults with CP vary, depending on the studies, between 75 and 25 % (Brattberg 2004; Carter et al. 2002; Hadden and von Baeyer 2002; Hirsh et al. 2011; Hunt et al. 2003; McKearnan et al. 2004; Odding et al. 2006; Parkes et al. 2009; Penner et al. 2013). Pain usually presents constantly or daily in half of the affected individuals and with a pain intensity ranging between 2 and 5 on a 0–10 scale (Hadden and von Baeyer 2002; Hirsh et al. 2011). Pain is mainly due to musculoskeletal causes (Carter et al., 2002) and is located in multiple body areas, with predominance of the cervical and lumbar areas and lower limbs (Brattberg 2004; Carter et al. 2002; Dudgeon et al. 2002; Hadden and von Baeyer 2002; Hirsh et al. 2011; Hunt et al. 2003; Lannin et al. 2007; McKearnan et al. 2004; Arve Opheim et al. 2011; Riquelme et al. 2011; SchmelzleLubiecki et al. 2007). It has been observed that the inability to walk does not affect pain intensity, but it does affect the number of body areas affected by pain. Thus, for example, Malone and Vogtle (2010) examined pain and its interference with daily activities in two groups of people with CP, ambulatory and nonambulatory, for 3 months, finding no differences in maximum pain intensity between the two groups, although the walking people presented fewer painful areas than the nonambulatory. In the pediatric population with CP, pain levels are usually similar to those of adults, with an incidence ranging between 78 and 41 % of the cases, depending on the studies. Pain usually presents with a weekly or daily frequency and with an intensity between moderate and severe (Breau et al. 2003; Engel et al. 2005; Novak et al. 2012; Parkes et al. 2009; Parkinson et al. 2013; Ramstad et al. 2011; Riquelme et al. 2011; Russo et al. 2008; Tervo et al. 2006). The most frequent causes of pain are accidents (especially in children with greater motor disability), gastrointestinal pain, infections, headaches, and musculoskeletal disorders (Breau et al. 2003; Parkinson et al. 2013; Penner et al. 2013; Ramstad et al. 2011). Pain is associated with an increase in children's dependence (Tervo et al. 2006), as well as greater interference in daily activities such as sleeping, physical education programs, or school activity (Engel et al. 2002; Geister et al. 2013; Ramstad et al. 2011; Tervo et al. 2006). In a disability as complex as CP, with so many associated disorders, pain can be related to multiple variables, such as motor deficit, age, gender, problems with the limbs, chronic fatigue, sleep disorders, and impairment of the physical function (Breau et al. 2003; Carter et al. 2002; McKearnan et al. 2004; Riquelme et al. 2011). One factor that has received particular attention in CP is the relation between pain perception and motor impairment. However, the results obtained to date are


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contradictory and not very clarifying. Whereas some studies have shown a close association between pain suffered by children with CP and the severity of their motor impairment (children with greater motor impairment present more frequent pain; Barney et al. 2013; Houlihan et al. 2004), other investigations found no significant association between pain and the degree of functional limitation described with the GMFCS. Nevertheless, significant correlations between the GMFCS values and other variables, such as mobility, dexterity, oral expression, sensory deficits, or cognition, have been reported (Kennes et al. 2002). Riquelme et al. (2011) confirmed the presence of pain at early ages of similar intensities to those manifested by adults. With regard to sex, Parkinson et al. (2013) found a higher incidence of pain in young females and in people with emotional problems. Moreover, in one third of the adult population with CP, chronic pain and fatigue are closely related, affecting 16 % of the population (Van Der Slot et al. 2012). People with CP are not only subject to the same sources of pain as the general population, but also, due to their pathology, to other processes that can cause pain such as spasticity, orthopedic problems, or digestive dysfunctions (Doralp and Bartlett 2010; Engel et al. 2003; Gallien et al. 2007; Intiso et al. 2014; Jahnsen et al. 2004; Jozwiak et al. 2011; Kadhim et al. 2013; Kirstyn et al. 2007; Nolan et al. 2000; Penner et al. 2013; Russo et al. 2008; Schwartz et al. 1999). Painful etiologies, such as spasticity or musculoskeletal problems, can turn daily life activities like standing, walking, or physical activity into sources of pain (Geister et al. 2013; Krigger 2006). In this sense, the study of Riquelme et al. (2011) revealed that people with CP are subject to a greater number of painful health procedures than healthy people. For instance, people with CP repeatedly suffer pain caused by habitual health procedures, such as surgery, injections, stretching, manipulation by other people, immobility, or inadequately adjusted orthotics (Brattberg 2004; Carter et al. 2002; Hadden and von Baeyer 2002; Hunt et al. 2003; Hurvitz et al. 2013; Jaspers et al. 2013; Kadhim et al. 2013; Kibele 1989; Krigger 2006; Lannin et al. 2007; McKearnan et al. 2004; Riquelme et al. 2011). According to a study of Parkinson et al. (2013), 43 % of children with CP experience pain during physiotherapist procedures. Likewise, adults with CP consider habitual physiotherapist activities such as mobilizations, palpations, and supporting weight with the lower limbs to be painful (Krigger 2006). These data reveal the importance of applying techniques to rate, prevent, and relieve pain in habitual clinical practice. Optimal pain management depends on its accurate rating (Anand and Craig 1996). For this purpose, a series of difficulties should be taken into account beforehand, such as cognitive and communication deficiencies suffered by many people with CP (many of them pediatric patients), as well as multiple painful etiologies (Penner et al. 2013). In this sense, although the direct report by the person with CP is considered the optimal procedure for rating pain (Breau et al. 2003; McGrath et al. 1998), many authors have resorted to rating it by means of reports or questionnaires completed by parents, caregivers, or health professionals, whereas others use combined interviews of the person with CP and his or her parents/caregivers. Nevertheless, in a study carried out by Hadden and von Baeyer (2005) it is suggested that the capacity of children with CP to communicate pain does not influence the



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way their parents report the observed pain. Parkinson et al. (2010) compared questionnaires administered to communicative children with CP with those completed by parents of communicative and noncommunicative children. The results showed that the frequency of pain perceived in both populations was similar (60 % in the children’s questionnaires vs. 73 % in the parents’ questionnaires), but the situations related to pain were different. Thus, whereas in the children’s questionnaires, pain was associated with age but not with the severity of the pathology, the parents associated greater frequency and intensity of pain with the severity of the pathology and the presence of epileptic crises. However, more recent studies comparing pain ratings of children with CP with those of their parents have found both overrating and underrating of pain by parents (Boling et al. 2013; Ramstad et al. 2011).

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Pain Management

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As mentioned above, pain of different intensity, frequency, and multiple body locations is one of the most frequent comorbidities in people with CP. Therefore, a goal to improve the well-being of people with CP should be the application of methods or intervention procedures to relieve pain. In this sense, Hadden and von Baeyer (2002) estimated that almost one third of adults with CP expressed dissatisfaction with the care and treatment they receive for their problems of pain. Likewise, Krigger (2006) stated than only 13.6 % of the adolescents and adults with CP and without ambulatory ability who feel pain receive specific pain treatment, despite the relation between pain and the rehabilitation procedures (e.g., mobilizations or palpations). In turn, health professionals do not always monitor pain systematically and they also confer little relevance to pain in children with CP with cognitive deficits (Dudgeon et al. 2002; Massaro et al. 2013). In contrast, according to Vargus-Adams and Martin (2011) pain was revealed to be one of the main treatment goals for health professionals who work with people with CP. From this perspective, Swiggum et al. (2010) stated that 80 % of the physiotherapists attending children with neurological problems apply subjective measures to rate pain. Of them, 70 % use scales completed by the child, and 48 % use behavioral and physiological measures. In addition, they usually use distraction, praise, information, and conversation to decrease pain and stress during painful procedures. In this sense, the literature also presents institutionally established protocols to reduce anxiety associated with painful health procedures, for example, explaining through play the procedure of injecting botulinum toxin in a prior nursing consultation (Gosset et al. 2012). Another procedure such as the presence of clowns during the botulinum toxin injections was efficacious in some cases (girls after several visits), but it was harmful in others (children younger than 8 years) (Hansen et al. 2011). A decrease is noted in the use of health services by people with CP when they reach adulthood (Hilberink et al. 2007). Engel et al. (2002) have shown that fewer than 25 % of adults with CP requested help from health services for pain management. When they did so, they went to various health professionals (doctors, nurses, physiotherapists, and occupational therapists) (Engel et al. 2002; Hirsh et al. 2011).

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Physiotherapy interventions seem to be the most frequently used technique to relieve pain and are considered moderately effective by adults with CP (Engel et al. 2002; Hirsh et al. 2011; Opheim et al. 2011). Also, the study of Engel et al. (2002) showed the scarce use of a single treatment and that passive interventions were preferred to those requiring the subject’s active intervention. Thus, for example, analgesic medication was used by 72 % of the subjects, whereas psychological intervention was used by 16 %, and physical exercise only by 3 %, although this was one of the interventions considered the most effective by the subjects themselves. More invasive interventions, such as surgery, are not received due to lack of access, lack of interest, or because they are considered inadequate for the specific case. Although people with CP perceive that most analgesic treatments were at least moderately useful, they were used by a relatively small part of the sample and only for a short period of time. A 2-year longitudinal study revealed an increase in the frequency of treatments used by adults with CP, who considered that most treatments were moderately helpful (Jensen et al. 2004). However, at the end of the study, the only treatments showing a perceived decrease in pain intensity were whirlpool baths, ultrasound, and transcutaneous electrical nerve stimulation (TENS). The remaining treatments seem to produce some pain relief for a short time after their administration; however, the relief was subjectively rated by the subjects as “better than nothing.” Engel et al. (2003) showed low levels of satisfaction with the general procedures of pain relief, with 32.8 % of the interviewees referring to dissatisfaction, which was positively related to the subject’s degree of pain intensity. The use of antispastic drugs has shown beneficial effects in pain relief in people with CP (Chaleat-Valayer et al. 2011; Intiso et al. 2014). Orthopedic surgery can produce a decrease in pain associated with musculoskeletal deformities (Hasler 2013; Vles et al. 2013). Multimodal analgesia and epidural analgesia associated with surgery have been shown to be effective to control perioperative pain in children with CP (Moore et al. 2013), as well as local analgesic products used during the injections of botulinum toxin (Brochard et al. 2011). However, Vogtle et al. (2013) showed that physical exercise decreased pain and fatigue in adults with CP. The use of somatosensory therapy has been shown to increase pain thresholds in adults with CP (Riquelme et al. 2013). Other authors are investigating the efficacy of less conventional treatments such as techniques to modulate pain by means of virtual reality (Steele et al. 2003). Caregivers’ attention to positioning and in the daily care activities could improve pain in nonambulatory people with CP (Bischof and Chirwa 2011). People with CP seem to use many pain coping strategies spontaneously, which allow them to adapt to their chronic pain by means of pain management programs (exercise sets, distraction, persistence in tasks, ignoring pain, relaxation or seeking social support) (Dudgeon et al. 2002). Jensen et al. (2006, 2011) associated pain in people with CP with psychosocial factors such as catastrophism, strategies for resting and persisting at a task, and seeking social support. These authors confirmed that changes in coping strategies were related to changes in functionality (for example, a decrease in catastrophism and an increase in perseverance in the activity were associated with decreases in the levels of interference due to pain and the levels of depression at 6 months). According to these studies, the most efficient strategies to



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increase functionality were decreasing catastrophism and persevering in the task, so prioritizing these strategies could increase the levels of participation of people with CP. Engel et al. (2002) proposed the existence of a cognitive-behavioral model of chronic pain that is applicable to people with CP, so cognitive-behavioral interventions could train coping responses to reduce depression and increase participation. Brunton and Bartlett (2013) proposed the use of strategies to promote awareness of one’s body, thereby facilitating recognition of the painful effects produced by diverse activities as a way of improving pain management and fostering responsibility for health needs in adolescents with CP. Chong et al. (2012) found a relationship between the size of drawings of their own body and pain perception in children with CP, and recommend its use as a therapeutic strategy in clinical practice to help the children discuss their condition.

330

Other Comorbidities

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331 332 333 334 335 336 337 338 339 340 341 342 343 344 345 346 347 348 349 350 351 352 353 354 355 356 357 358 359

Brain damage is usually accompanied by other deficiencies, so that, due to their high prevalence, the extent to which they interfere with the person’s skills to participate in desired activities and roles should be analyzed. Different disorders that usually coexist with CP are described below: Intellectual disability (ID). It is estimated that 23–44 % of the people with CP present ID. The prevalence of cognitive alterations varies as a function of the type of CP, and it increases especially in the presence of epilepsy (Odding et al. 2006). Behavior problems and psychiatric disorders. Parkes et al. (2008) and Brossard-Racine et al. (2012) note that approximately 40 % of the children with CP present behavior problems. The problems most frequently found have been difficulties with classmates, hyperactivity, attention deficit, emotional symptoms, and absence of prosocial behaviors (Bjorgaas et al. 2013; Bjorgaas et al. 2012; Brossard-Racine et al. 2012; Parkes et al. 2008; Sigurdardottir et al. 2010). More than one half of the children with CP meet the diagnostic criterion for Attention Deficit with Hyperactivity Disorder/Attention Deficit Disorder (ADHD) (Bjorgaas et al. 2012; Parkes et al. 2008). Sensory deficiencies. Vision, hearing, and other sensory pathways may be affected, although they are more frequent in CP with hemiplegia. Sixty-two percent of the children present ophthalmologic problems (Odding et al. 2006). Endocrinological disorders. Most children with CP suffer from gastrointestinal and feeding problems. Thus, for example, suction (57 %) and salivation problems (38 %) are very common in the first 12 months of life. Children with CP also present retarded growth and weight problems (Odding et al. 2006). Urogenital disorders. At least 25 % of the children and adolescents with CP have primary urinary incontinence, which is more frequent in quadriplegic CP accompanied by ID (Odding et al. 2006). Communication. CP can present a great diversity of language and communication problems. Estimations of these alterations vary very much depending on the


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authors, but it can be stated that about 60 % of the cases of CP present language problems. These alterations vary considerably in each person and refer to problems in language acquisition and expressive language (80 %). In this sense, these people usually present a communicative deficit that may be due to ID or to a speech disorder (dysarthria) or to both (Odding et al. 2006). Epilepsy. People with CP can present diverse epileptic syndromes. It is present in about 20–40 % of the children and is more common in hemiplegic and quadriplegic CP (Odding et al. 2006). Secondary musculoskeletal problems. Muscular contractions (73 %), hip dislocations (75 %), and scoliosis (72 %) are very frequent (Odding et al. 2006). Fatigue. The experience of physical fatigue is significant in people with CP and it has an impact on the maintenance of functional skills and on the perception of life satisfaction (Brunton and Rice 2012; Jahnsen et al. 2003; Opheim et al. 2009).

Participation and Quality of Life The new approach, in which the WHO has actively participated, focuses more on health components rather than on the consequences of the disease. From this perspective, disability is a social construct, implying an interaction between the person and the environment, so that special emphasis is granted to promoting participation and QOL of people with disabilities. The right to participation of people with disabilities, like any other citizen, is reflected in the Convention of Rights of People with Disabilities (United Nations 2006), has the goal of “promoting, protecting, and ensuring the full enjoyment and in conditions of equality of all the essential rights and liberties of all people with disabilities, and to promote the respect of their inherent dignity” (p. 4). More specifically, in Article 3, the commitment of the member states is to “guarantee full and effective participation and inclusion in society” (p. 5). From the biopsychosocial perspective of the model of human functioning, participation is understood as the person’s capacity to engage in different life situations (related to family, education, life at home, etc.). Moreover, participation is considered an essential part of the person’s development and is related to the outcomes of QOL. The current explanatory models of participation do not focus exclusively on the child’s factors, describing it instead from many perspectives or levels. Thus, for example, King et al. (2003) propose a conceptual model with 11 environmental, family, and children’s factors, which can influence their participation in leisure activities, and serves as a tool to guide research and to plan social policies and programs for children with disabilities and for their families. The model adopts an integral, socioecological perspective, focusing on children’s strengths, the family, and the community. According to the authors, some factors directly predict participation, such the child’s functional ability (cognitive, communicative, and motor), the family’s participation in recreational and leisure activities, and values regarding cultural and intellectual aspects and, finally, the child’s preference for activities.


13 The Relationship of Cerebral Palsy Comorbid Conditions with Participation … 401 402 403 404 405 406 407 408 409 410 411 412 413 414 415 416 417 418 419 420

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The factors that indirectly predict participation are the parents’ perception of environmental barriers, family cohesion, supportive relations toward the child, as well as the family income. Basically, the model attempts to analyze the complex relations between the child and the family and community contexts (King et al. 2003). Currently, there is growing interest in the study of the construct of participation and in the development of assessment instruments. The available literature on the topic indicates that there are many dimensions to participation. Most of them consider the number of activities carried out (diversity), the frequency of participation in the activities (intensity), enjoyment, and preference for activities. In fact, it is important to assess all the dimensions of participation to further our comprehension of the phenomenon and, especially, to know which activities the children and adolescents perform, with whom, and the degree of enjoyment of the activities, regardless of the degree of difficulty or help needed to perform them (Law et al. 2006; Michelsen et al. 2009). Actually, participation is a complex phenomenon and it includes objective and subjective aspects (Imms et al. 2008). Table 13.3 presents some of the most extensively used assessment instruments according to the definition of participation of the ICF (2001). Interest in QOL in educational, health, and social service settings has grown in the past three decades. This has led to a better comprehension of the construct of QOL in its conceptualization, measurement, and application. Currently, a consensus Assessment instruments of participation according to the ICF model Instrument

Authors/Year

Contents

Children´s assessment of participation and enjoyment (CAPE/PAC)

(King et al. 2007)

It assesses participation in the leisure activities outside the school setting

Child and adolescent scale of participation (CASP)

(Bedell 2004)

It appraises participation at home, at school, and in the community

Frequency of participation questionnaire (FPQ)

(Michelsen et al. 2009)

It assesses participation frequency in activities related to the social context

Lifestyle assessment questionnaire) LAQ-CP

(Mackie et al. 1998)

It appraises restrictions to participate in the activities

Assessment of life habits) for children (LIFE-H)

(Noreau et al. 2007)

It assesses participation in the areas described by the ICF

Assessment of life habits for adults (LIFE-H)

(Noreau et al. 2004)

It assesses participation of older persons in significant social roles such as leisure and community life

Questionnaire of young people’s participation (QYPP)

(Tuffrey et al. 2013)

It assesses participation frequency during leisure time at home, at school, or at work

Community participation indicators (CPI)

(Heinemann et al. 2011) It has 20 engagement items: frequency of the activity, and importance of the activity and assessment of the feelings of people who do the activity enough, too much or not enough. It also has 48 items measuring independence


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has been reached about four guidelines that can serve as a basis to use QOL outcomes for personal development. These four guidelines are the following: (1) QOL is multidimensional and has the same components for everyone; (2) its measurement consists of the degree to which people are satisfied with life; (3) it improves with self-determination, resources, a life purpose, and a feeling of belonging; and (4) the predictors of quality outcomes should be the focus (Schalock et al. 2008; Verdugo et al. 2005). Likewise, the application of the concept of QOL has become an agent of change, because it allows us to understand people with disabilities and it facilitates establishing practical changes and changes in the social policies in order to improve QOL outcomes (Schalock et al. 2008). However, QOL is related to the concept of health of the WHO—physical, mental, and social well-being—rated from individuals’ perception of health, attending to their cultural demands, systems of values, goals, expectations, and concerns. According to the model proposed by Schalock and Verdugo (2002), QOL is a concept that reflects the desired conditions in eight essential needs that represent the core of a person’s life dimensions: emotional well-being, interpersonal relationships, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights. These eight domains have been described as quality indicators through the analysis of the scientific literature on QOL (Schalock et al. 2005; Schalock and Verdugo 2002). These dimensions are affected by environmental and personal factors and they are the same for everyone although they can vary depending on the value and importance attributed to them by each person. Summing up, QOL is a multidimensional construct, which incorporates objective and subjective accounts of personal feelings, social relationships, local environment, societal values, political institutions, economic conditions, and international relations (Bjornson and McLaughlin 2001; Colver 2009). The current model to understand disability has led to a change in the intervention procedures aimed towards the improvement of QOL outcomes in people with CP. As a result, extensive research has been carried out in order to develop assessment instruments for QOL. Verdugo et al. (2005) propose the following guidelines for the measurement of QOL: (1) it should reflect the dimensions of QOL and the perceptions of personal satisfaction, (2) it should include the dimensions and indicators, (3) it should include objective and subjective aspects, (4) it should include the use of consumers as interviewers, and (5) it should relate it to natural behavior and everyday settings. Thus, the comprehension model, based on the biopsychosocial approach to disability, has promoted the development of intervention procedures oriented towards improving QOL outcomes in people with CP. As a result, extensive research has been carried out in order to design and validate assessment instruments for QOL. For example, within the European Community framework, two projects were carried out with the goal of constructing assessment instruments of QOL. The first project is the KIDSCREEN, which led to three generic QOL instruments: KIDSCREEN-52, KIDSCREEN-27, and the KIDSCREEN-10 Index. These assessment instruments rate self-perceived QOL in healthy children and adolescents and in those who have chronic diseases. As they were developed conjointly and simultaneously in 13 European countries, these are cross-cultural QOL instruments



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(Ravens-Sieberer et al. 2008; Ravens-Sieberer et al. 2013). The KIDSCREEN-52 provides detailed information about the health profile for ten QOL dimensions and it has 52 items. It contains the following dimensions: physical well-being, psychological well-being, mood, self-perception, autonomy, relation with parents and family life, economic resources, friends and social support, school setting, and social acceptance. The KIDSCREEN-52 is available in versions for children and adolescents, as well as a version for mothers, fathers, or informers, and it has been translated and adapted to different languages. The second project is DISABKIDS, which has provided two questionnaire modules. The first one consists of the construction of a generic questionnaire for children and adolescents who suffer from any chronic medical condition. The second one is a group of specific questionnaires, one for each chronic health condition, among them, one for children and adolescents with CP (Baars et al. 2005).

479

Participation Outcomes

466 467 468 469 470 471 472 473 474 475 476 477

480 481 482 483 484 485 486 487 488 489 490 491 492 493 494 495 496 497 498 499 500 501 502 503 504 505 506 507

People with CP have fewer opportunities to participate in different relevant life areas, such as social life, education, work, etc., which can negatively affect their perceived levels of QOL (Fauconnier et al. 2009; Law et al. 2006; Parkes et al. 2010). Diverse studies have shown that children and adolescents with CP present low diversity and intensity of extracurricular activities, they participate in few formal activities, although they display high levels of enjoyment (Bult et al. 2010; Bult et al. 2011; Engel-Yeger et al. 2009; Fauconnier et al. 2009; Imms et al. 2008; Longo et al. 2013; Shikako-Thomas et al. 2012; Shikako-Thomas et al. 2013). When analyzing the type of activities in which children and adolescents with CP engage, the results show that they participate more frequently in social and recreational activities (Longo et al. 2013; Shikako-Thomas et al. 2013) in comparison with physical and self-improvement activities (Bult et al. 2010; Imms et al. 2008; Law et al. 2006; Orlin et al. 2010; Shikako-Thomas et al. 2013). However, although there has been a relevant advance in the study of the participation of children and adolescents with CP, most studies have focused on leisure and physical activity; it is, therefore, necessary to determine their participation in the diverse categories of ICF (2001). From this more extensive perspective of the concept of participation, Michelsen et al. (2013) recently analyzed the participation frequency of adolescents living in Europe, using the Questionnaire of Young People’s Participation (QYPP), an instrument that assesses engagement across different life situations (family life, education, work, recreation and leisure, autonomy, etc.) in young people with disability. The results of the study showed that adolescents with CP spent less time with friends, practiced sports with lower frequency, were more sedentary, and felt less autonomous in daily life. Nevertheless, as participation is a multidimensional construct that includes objective and subjective aspects and is made up of diverse dimensions (e.g., diversity, frequency, preference, satisfaction, etc.), it is important to advance in its study, taking into account all its dimensions to further our comprehension of the phenomenon.


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Although there is currently greater interest in participation, there are few studies analyzing the engagement of adults with CP in diverse life situations. Levasseur et al. (2004) indicate that older people with physical disabilities present moderate alterations in social participation and restrictions in the social roles of daily life. In the sphere of engagement of people with CP in leisure time, Badia et al. (2013), in a study with youngsters and adults with developmental disabilities (16 % CP), found that the activities with the highest participation were social activities (70 %), followed by recreational activities at home (58.5 %) and, in a much lower percentage, physical activities (27.5 %). However, they also found that the participants preferred social (63.7 %) and physical activities (63.7 %) more frequently than recreational activities at home (51.3 %). Regarding their interest in new leisure activities, they showed greater interest in participating in physical activities (33 %) (Badia et al. 2013). Nevertheless, the scarce information currently available about the engagement of adults with CP in different life areas reflects the need to advance in the study of participation, as it is considered as a determinant of a person’s QOL.

523

The Impact of Disability Factors on Participation

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543

From the perspective of human functioning, motor and communication limitations and other restrictions in the activity usually presented by people with CP can have a negative impact on their participation. Thus, for example, diverse studies have shown that the levels of gross motor function and of ID influence the diversity and intensity of participation in leisure activities (Fauconnier et al. 2009; Kerr et al. 2007; Maher et al. 2007; A. Majnemer et al. 2008; Morris and Bartlett 2004; Morris et al. 2006). Likewise, Michelsen et al. (2013) have shown that adolescents with CP with greater motor, cognitive, and communicative impairment had fewer social contacts and scarce opportunities for decision making. For example, it has also been observed that communication skills are one of the functional characteristics that has more predictive value for participation in self-overcoming activities (e.g., shopping, doing homework, reading, etc.) (Clarke et al. 2011). It has also been shown that pain interferes with daily activities, contributing to deterioration of the capacity to walk, balance, and increasing physical fatigue (Carter et al. 2002; Odding et al. 2006) and in general, interfering with the independence and capacity to participate in a person with CP (McKearnan et al. 2004; Penner et al. 2013). Diverse studies have shown a positive correlation between the number of painful areas or pain duration and the capacity to carry out daily activities (Barney et al. 2013; Malone and Vogtle 2010). Moreover, Ramstad et al. (2012) associated recurrent musculoskeletal pain with parents’ lower satisfaction with the social role fulfillment of their children with CP.

544

Quality of Life Outcomes

508 509 510 511 512 513 514 515 516 517 518 519 520 521

525 526 527 528 529 530 531 532 533 534 535 536 537 538 539 540 541 542

545 546 547

The application of the concept of QOL has become an important measurement of the outcomes of intervention procedures, as it allows us to understand that people with CP, despite the presence of deficiencies, can lead a satisfactory life and, in



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addition, it promotes changes in the professional practices in order to improve QOL outcomes. Some investigations indicate that children with CP have worse QOL outcomes. For example, Majnemer et al. (2007) reported that approximately one half of the children with CP of their study obtained worse QOL outcomes, indicating that motor limitations, behavior problems, and family functioning were determinants of QOL. However, the study carried out by the SPARCLE group, in which six European countries participated, has shown that the self-reports of QOL in children with CP are similar to those of children from the general population, and children with CP even obtained better results in the school setting domain, where they reported a significantly higher QOL (Dickinson et al. 2007). Therefore, recent research shows that children with CP perceive satisfactory well-being in spite of the limitations in their functioning, which means that they adapt well to their limited activity. As noted by Rosenbaum (2008), it is surprising that the subjective QOL of children with CP is similar to that of the general population. However, although an adult without disability may not perceive it this way, from the viewpoint of a child with CP who was born and grew up with that disability, life has the same intensity as it does for most children (Rosenbaum 2008). That is, these results reveal that there are differences in the perceptions of children with CP and those of their parents with regard to their QOL. Thus, some studies comparing the perceptions of QOL of children and adolescents CP with those of their parents confirm that the parents tend to underestimate their children’s QOL in most domains (physical and emotional well-being, mood and emotions, self-perception, social support, social acceptance, and bullying) (Davis et al. 2007; White-Koning et al. 2007). Currently, there is no available extensive research on QOL of adults with CP, so we do not know their degree of satisfaction with the diverse life spheres, including physical, social, economic, and psychological well-being. A recent study of Badia et al. (2013) has shown that, analyzed from the perspective of professionals, the QOL of adults with CP is good. However, the analysis of the participants’ QOL profile revealed poorer results in self-determination, rights, and social inclusion. These findings agree with some prior studies showing that people with developmental disabilities do not enjoy high levels of self-determination (Wehmeyer and Garner 2003) and obtain worse results in the dimensions related to social inclusion and rights (Jenaro et al. 2013).

583

Comorbidities and Quality of Life

584

People with CP may perceive satisfactory well-being in spite of the presence of other deficits (Dickinson et al. 2007; Majnemer et al. 2007). Dickinson et al. (2007) in the SPARCLE study, showed that, in many aspects, QOL is not associated with deficiencies, suggesting that it is probably determined by social and environmental factors. Nevertheless, when they attempted to identify which factors influenced worse QOL outcomes, they found that children with worse motor impairment obtained a low level of physical well-being, and that the presence of ID was related to

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585 586 587 588 589 590


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627 628

poorer scores in mood and autonomy (Dickinson et al. 2007). It seems confirmed that the presence of pain has an impact on QOL, not only on the physical domains, but also on the emotional and social domains (Arnaud et al. 2008; Dickinson et al. 2007; Riquelme et al. 2011; Swiggum et al. 2010). Finally, according to Majnemer et al. (2007), children with behavior problems may have more difficulties adapting to daily tasks and integrating socially, and this can affect their emotional well-being and relations with their classmates. In ageing adults with CP, it was found that their level of motor function measured by means of the GFMCS does not influence their QOL (Badia-Corbella et al. 2013; Tarsuslu and Livanelioglu 2010). Nevertheless, Badia-Corbella et al. (2013) found that, when analyzing the different dimensions of QOL, adults who need physical assistance to walk (level III of the GMFCS) obtained lower levels of material and physical well-being. This outcome shows that the ageing process affects QOL in people with ambulatory limitations and is one of the causes of the presence of pain (Andersson and Mattsson 2001). In fact, pain is indicated as a significant concern in adults with CP, related to increasing age, decrease in functionality, and inactivity (Murphy 2010; Tarsuslu and Livanelioglu 2010; Turk 2009). Investigations like those de Engel et al. (2003) and Jahnsen et al. (2004) focused on the intensity and location of pain, finding that 67 % of adults with CP present chronic pain in one or more body parts (back, hips, and lower limbs). Orthopedic problems, poor bone density, fractures, and mandibular, dental, and feeding problems are also sources of pain in adults with CP (Vogtle 2009). Moreover, it has been confirmed that pain increases with age (Vogtle 2009) and can negatively affect QOL (Riquelme et al. 2011). In a study of Engel et al. (2003) revealed that people with CP who suffered pain indicated high levels of psychological stress and moderate life satisfaction, although the interference of pain in their daily activities was rated as low (2.5–3 on a scale ranging from 0 to 10). Other authors have shown that pain is associated with depression, frustration, and feelings of loneliness (McKearnan et al. 2004; Van Der Slot et al. 2012). However, Badia-Corbella et al. (2013) also showed that the level of self-determination, an essential dimension of QOL for people to cope with situations independently, decreases as the degree ID increases. Finally, it has been confirmed that adults with CP with problems of social communication have fewer social interactions and they suffer from loneliness (Ballin and Balandin 2007), which negatively affects QOL in all its dimensions, except for the dimension of physical well-being (Badia-Corbella et al. 2013). Basically, these findings suggest that health problems—such as the presence of chronic pain and the difficulty to obtain adequate mobility devices—negatively affect the QOL outcomes in adults with CP who need mobility aids.

629

Intervention Approach to Enhance Personal Outcomes

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630 631 632

The current definition of CP based on the socioecological comprehension of human functioning is promoting a change in the organization and planning of support services for people with CP and their families in different countries. These services



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have the purpose of guaranteeing their inclusion in the community, favoring their participation, and improving their QOL. Consequently, the current orientation of interventions is aimed at the development of procedures to promote the achievement of functional skills that facilitate autonomy and participation. Thereby, by means of an adaptation to a task (for example, a technical aid for communication) or a modification of the environment (for example, the availability or ramps in public spaces), functional independence (for example, autonomous mobility in the community using a wheelchair) and good QOL can be achieved in spite of the presence of functioning limitations (Majnemer and Mazer 2004). There are basically two notable aspects that are necessary to assess the services targeting people with CP. The first should be “what does the child or adolescent do?” (participation), and the second, “how does the child or adolescent feel?” (QOL) (Colver and Sparcle group 2006).

646

Summary

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655

The current perspective of the study of CP, based on the biopsychosocial model of disability, promotes the planning of intervention procedures that represent an important change in the care practices carried out till not very long ago. The current concept of CP is based on a multidimensional and individual perspective of human functioning, and on a definition that includes the diverse associated comorbidities. People with CP present a motor disorder, but the impact that other very common disorders may have on their participation and QOL is also acknowledged. Finally, in the past two decades, more interest has been awakened by multidisciplinary intervention programs aimed at achieving better participation and QOL outcomes for people with CP.

656

References

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Anand, K. J., & Craig, K. D. (1996). New perspectives on the definition of pain. Pain, 67, 3–6. Andersson, C., & Mattsson, E. (2001). Adults with cerebral palsy: A survey describing problems, needs, and resources, with special emphasis on locomotion. Developmental Medicine and Child Neurology, 43(2), 76–82. Arnaud, C., White-Koning, M., Michelsen, S. I., Parkes, J., Parkinson, K., Thyen, U., Beckung, E., Dickinson, H. O., Fauconnier, J., Marcelli, M., McManus, V., & Colver, A. (2008). Parentreported quality of life of children with cerebral palsy in Europe. Pediatrics, 121(1), 54–64. Baars, R. M., Atherton, C. I., Koopman, H. M., Bullinger, M., & Power, M. (2005). The European DISABKIDS project: Development of seven condition-specific modules to measure healthrelated quality of life in children and adolescents. Health Quality of Life Outcomes, 3, 70. Badia, M., Orgaz, M. B., Verdugo, M. Á., & Ullán, A. M. (2013). Patterns and determinants of leisure participation of youth and adults with developmental disabilities. Journal of Intellectual Disability Research, 57(4), 319–332. Badia-Corbella, M., Rodríguez-Pedraza, P., Orgaz-Baz, M. B., & Blanco-Pedraz, J. M. (2013). Quality of life in patients with cerebral palsy during aging process. [Calidad de vida en los pacientes con parálisis cerebral en proceso de envejecimiento]. Rehabilitacón, 47, 194–199.

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