Accepted Manuscript Title: Does Single-Event Multilevel Surgery Enhance Physical Functioning in The Real-Life Environment in Children and Adolescents with Cerebral Palsy (CP)?: Patient perceptions five years after surgery Author: Krista Lehtonen Helena M¨aenp¨aa¨ Arja Piirainen PII: DOI: Reference:
S0966-6362(14)00758-9 http://dx.doi.org/doi:10.1016/j.gaitpost.2014.11.005 GAIPOS 4353
To appear in:
Gait & Posture
Received date: Revised date: Accepted date:
10-7-2013 12-11-2014 16-11-2014
Please cite this article as: Lehtonen K, M¨aenp¨aa¨ H, Piirainen A, Does Single-Event Multilevel Surgery Enhance Physical Functioning in The Real-Life Environment in Children and Adolescents with Cerebral Palsy (CP)?: Patient perceptions five years after surgery, Gait and Posture (2014), http://dx.doi.org/10.1016/j.gaitpost.2014.11.005 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
*4. Title Page (with authors and addresses)
DOES SINGLE-EVENT MULTILEVEL SURGERY ENHANCE PHYSICAL FUNCTIONING IN THE REAL-LIFE ENVIRONMENT IN CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY (CP)?: Patient perceptions five years after surgery.
Krista Lehtonen, MSc.PT Metropolia University of Applied Sciences, Helsinki University of Jyväskylä, Department of Health Sciences
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Puoshaankuja 8 02480 Kirkkonummi
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Finland
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[email protected]
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Helena Mäenpää, MD, PhD.
Helsinki University Central Hospital, Department of Paediatric and Adolescent Diseases
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[email protected]
Arja Piirainen, PhD, PT
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[email protected]
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University of Jyväskylä, Department of Health Sciences
Acknowledgements
The authors thank Tuula Niemelä, Nea Vänskä, the personnel in University Hospital Chil-
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dren’s rehabilitation unit and our participants for their contributions during the study
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*5. Manuscript
DOES SINGLE-EVENT MULTILEVEL SURGERY ENHANCE PHYSICAL FUNCTIONING IN THE REAL-LIFE ENVIRONMENT IN CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY (CP)?: Patient perceptions five years after surgery.
ABSTRACT Orthopedic procedures are a method of treating gait deviations and musculoskeletal pathol-
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ogy that develop with age in cerebral palsy (CP). Recently single-event multilevel surgery (SEMLS) has become common practice. Although there is evidence that SEMLS could im-
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prove gait, it is unclear whether it will enhance overall physical functioning and coping strategies in the real-life environment. It is unclear how improved walking capacity affects actual
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functioning and enables greater independence. The aim of this study was to examine the
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perceptions of adolescents concerning the results of surgery on personal physical functioning in the environment five or more years after SEMLS. In this study, qualitative data were
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gathered by open interviews and analysed using phenomenographic approach, which aims to study variation in human understanding and perceptions of the phenomenon in question.
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Gait Profile Score (GPS) was used to describe the objective change. The results indicate that SEMLS had a clear positive effect on the participants’ physical functioning capacity, particu-
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larly experienced as better walking ability. GPS Improved by 3.5° five years postoperatively. Surgery could enhance physical activity and the motivation to maintain mobility in the future. The perceptions of the effect of surgery on physical functioning in the real-life environment varied from a challenge-avoiding, support-seeking agency to a highly active, independent
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agency in daily life. Our rehabilitation practice after multilevel surgery should be more focused on enhancing active agency in collaboration with adolescents with CP and their families.
Keywords: Cerebral Palsy; Single-event multilevel surgery; Gait; Physical Functioning; Physical Activity; Experience; Perception 1 Page 2 of 18
INTRODUCTION Cerebral palsy (CP) is defined as a group of motor disorders caused by a non-progressive disturbance in the developing brain. Although the injury is by nature non-progressive, musculoskeletal difficulties may increase with age [1]. A deterioration of functional abilities is frequently seen with respect to walking function. Adults with CP might lose their ability to walk,
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and walking distances could be reduced [2, 3]. Reported causes are increasing joint contrac-
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tures, pain, and fatigue as well as, reduced physical activity, balance and muscle strength [2, 4, 5]. The deterioration in mobility could be associated with the severity of the physical im-
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pairment [4].
Orthopedic procedures are one method of treating gait deviations and musculoskeletal pa-
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thology that develop with age. Recently single-event multilevel surgery (SEMLS) has be-
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come common practice. In SEMLS, musculoskeletal pathology is corrected in one operation by multiple procedures on different lower limb levels [6] Based on our survey of literature fo-
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cusing on the overall outcome of SEMLS from 2002 to date, using the Medline, Cinahl and Cochrane electronic databases, the focus on the studies of SEMLS outcome has been on
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body functions and structure classified according to World Health Organization International Classification of Functioning, Disability and Health (ICF) domains [7]. Improvements after surgery have been reported, especially in gait pattern [8, 9, 10, 11]. Gait velocity and step length might increase after surgery [10, 11]. Overall gait indexes, such as the GGI (Gilette
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Gait Index), the GDI (Gait Deviation Index) and the GPS (Gait Profile Score), show improvements after surgery [12, 13, 14, 15]. In the long-term follow up, the gait improvements might change towards the preoperative condition [13, 15]; however the improvement in gait seen in the overall gait indexes shows significant improvements 5 years postoperatively (15). Individual experiences and coping strategies with environmental factors might be important factors in mobility changes over time [16].
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In the ICF framework, the activities and participation domains are defined as the execution of action and involvement in life situations [7]. Outcome measures evaluating motor function, functional gait, health and quality of life have been used to study the outcome of SEMLS in these domains. The results have varied [17]. In a multicenter study by Gorton et al [14], no differences were found in the Gross Motor Function Measure (GMFM) scores between a surgical group of seventy-five children with spastic CP and a matched control group. In the only
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published randomized controlled study, the surgical group had a significant and clinically
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marked improvement in gait 12 and 24 months after surgery. Improvements in the GMFM, the Child Health Questionnaire physical function domain (CHQ-PF50) and the Functional
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Mobility Scale (FMS) were found at the twenty-four months follow-up in this study [12]. The GMFCS level appears to be stable in the majority of patients after surgery despite the im-
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provement in gait [18]. Cuomo et al [19] found improvements in the quality of life measures in
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the physical function related sections after surgery; however SEMLS did not have an effect on perception of functional wellbeing of the child or on perceptions of pain and happiness of
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the child or parents. The writers conclude that psychosocial well-being might not be directly correlated to functional well-being, which has also been found by others [20]. Gorton et al.
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[13] found changes in the Pediatric Quality of Life Questionnaire (PedsQL) physical functioning sub-score results and in the Pediatric Outcomes Data Collection Instrument (PODCI ) parent expectations results; however the authors conclude that these changes did not exceed the minimum clinical difference. Adolescents’ experiences of SEMLS have been studied
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by Capjon and Björk [21]. Most, but not all of the adolescents and parents, experienced positive changes in mobility and social involvement. There is evidence that SEMLS can improve gait and might have a positive effect on overall physical functioning [17]. It is unclear, however, if and how SEMLS would enhance physical functioning in the real-life environment, and how improved functioning capacity affects the actual functioning performance and enables more independent living. It is possible that the
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outcome measures that have been used do not consider all of the changes in functioning after SEMLS.
This study is part of a project evaluating the long-term effectiveness of SEMLS in children with CP. First, the aim of this study was to examine the perceptions of adolescents of the relevance of the surgery for their physical functioning and coping in the real-life environ-
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ment. Second, the aim was to improve our planning and rehabilitation process in SEMLS
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towards a client-centered service and to focus our interventions and rehabilitation to challenges that are relevant to this patient group. The research question is as follows: What are
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adolescents’ perceptions of physical functioning in their environment five or more years after
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a single-event multilevel surgery?
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METHODS Participants
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The participants were 10 adolescent or young adults with CP (age range 15-22 years at interview, operations/side mean 4.2 range 2-7/side). The participants were recruited from the
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hospital patient files. Inclusion criteria were: (1) diagnosis of spastic diplegic CP; (2) SEMLS five or more years ago; (3) no prior corrective surgery and (4) the willingness to participate. SEMLS was defined as a procedure in which all of the patient’s orthopedic deformities are corrected in one single surgical procedure [6]. Patients with communicative or cognitive defi-
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cits were excluded. The first 10 patients we could contact were included. All patients had instrumented gait analysis (IGA) before and 5 years after the surgery. All of the participants received intensive postoperative rehabilitation in a hospital ward for 4-10 weeks and physical therapy 2-3 times a week at home for two years. After the two-year postoperative phase, the intensity varied individually from short periods of physical therapy to regular weekly sessions. The participants’ characteristics are presented in Table 1. The expanded and revised Gross Motor Function Classification System (GMFCS-E&R) was used to describe the severity of the 4 Page 5 of 18
condition [22]. Ethical approval for the study was obtained from the University Hospital Ethical Committee. Written informed consent was obtained before participation from all of the participants.
Data collection and analysis Qualitative data were gathered by interviewing the patients. The interviews were conducted
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individually in each participant’s home environment. An open-ended interview was used to
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cover all of the aspects of functioning relevant to our patient group. The interview started with a key question where all of the participants were asked to describe their functioning after sur-
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gery. Follow-up questions were used to specify the content, ensuring that the following areas of interest were covered: (1) current functioning, environment and life situation; (2) the effect
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of SEMLS on functioning in the current situation and (3) the role of rehabilitation in the
varied from 32 to 155 minutes.
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SEMLS process. The sessions were taped and transcribed (164 pages), and the duration
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The transcribed data were analyzed using phenomenographic approach. Phenomenography aims to study variation in human understanding [23]. A conception is the basic unit of de-
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scription in phenomenographic research, including the ways of understanding and the ways of experiencing the phenomenon in question [24]. In this paper the term “perception” rather than “conception” is used for clarity. The aim in phenomenography is to identify the different perceptions and to study the relationships and structure of perceptions. The outcomes are
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presented as the themes in the interview data, and the variation within the themes are presented in categories. The categories describe the often-hierarchical structure of perceptions. The outcome presents the range of different meanings, the collective understanding, in the target group. [23]
In the first phase of the analysis the transcripts were read through several times. The goal was to identify the overall themes and to gather all of the participants’ statements concerning 5 Page 6 of 18
the phenomenon. The notes were collected and forming the categories began. The process of analysis is presented in Figure 1. As presented by Åkerlind [23], developing categories were continuously compared with the data which were resorted accordingly. The content of the categories and the relationships between the categories were modified in comparison to the original data.
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The GPS, which is calculated from gait kinematics and describes the overall gait pathology
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[25], was used to describe the objective change 5 years after SEMLS. Kinematic gait data were collected using six-camera Vicon 370 or eight-camera Vicon Nexus system and calcu-
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lated using Plug-in Gait (Oxford Metrix, Oxford, UK). The GPS was calculated for both legs on three individual gait cycles. The quantitative data were analyzed using SPSS 21 Statistics.
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Wilcoxon Signed Rank nonparametric test was used to detect significant difference between
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preoperative and five-year postoperative GPS results.
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RESULTS
The perceptions of functioning after SEMLS presented a complex view including per-
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sonal factors and choices, family dynamics and the role of rehabilitation. The term agency was used to describe this broad perspective on functioning. Agency refers to an ability to make things happen intentionally by planning, setting goals, acting and reflecting. It describes the capability to have control over one’s life. [26]. The percep-
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tions were described through four themes: physical functioning, strategies in the environment, agency in rehabilitation and the nature of support (Table 2). The variation in the perceptions within the themes formed three categories presenting a hierarchy in the functioning. The first category presents the basic level of functioning. The degree of the increase in independent activity and self-efficacy is presented in the second category. The third category describes an active, independent agency in daily life. (Table 2). Five years after operation there was a significant (p=0.011) improvement in GPS 6 Page 7 of 18
(mean difference 3.5°, 95% confidence interval 1.6, 5.4, n=9 due to one missing preoperative analysis). The GPS value of one participant deteriorated and improved in other cases. (Table 1). Basic/ category I: Challenge avoiding functioning In this basic category, all of the participants reported improvements in their body function and structure (Table 2). These improvements included improved and more extended posture, bet-
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ter alignment of the lower extremities and, increased muscle strength and joint mobility. A
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more aesthetic gait was experienced. The change was described as visible and concrete. It was easier to maintain balance in an upright position and falling occurred less often than be-
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fore the operation. The experiences concerning pain varied. Some experienced changes overtime. This change was seen as going back to the old movement pattern and was experi-
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enced in increased muscle tightness. The condition was perceived better than before the op-
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eration.
Activity in the environment was perceived as challenging. The participants expressed that
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they avoid challenging environmental situations. The common challenges were uneven terrain, long distances, crowded places, heavy doors, stairs and high shelves in stores. The par-
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ticipants avoided communicating with strangers. Physical therapy was described as therapistdriven. The participants expressed that they could not cope without therapy and that therapy was planned and conducted by the therapist. The nature of support was perceived as care and continuous assistance. Support was pro-
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vided by parents and health care professionals. The parents acted as personal assistants and were strongly involved in the participants’ everyday life. In health care, the participants liked having the familiar personnel around and enjoyed undivided attention and encouragement. Some of the participants experienced, that they were given too much responsibility during the postoperative rehabilitation and that the expectations were too high for them. Developing/ category II: Active in the environment
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In this category, the participants reported that their physical functioning and mobility in environment had improved after surgery (Table 2). The operation had enabled them to maintain the future ability to walk. The changes in mobility were described as longer walking distances, effortlessness and less fatigue. The participants expressed, that they enjoyed moving more and that they were motivated to be physically active now and in the future. Physical activity was considered an important factor in maintaining functional abilities in the future.
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The participants reported various strategies in coping with their environment. Environmental
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factors affected their mobility choices; however in this category, the factors did not lead to avoidance. The choices were individual and were made for safety and self-efficacy and occa-
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sionally for comfort. Carrying, reaching and handling objects while upright were a challenge for most participants even if they did not use a gait aid. Personality and family culture were
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relevant factors when choices were made, i.e., when choosing between using a car, taxi and
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other public transportation.
Physical therapy and home exercise were considered important in maintaining the results.
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The goals of therapy were clearer than before the operation. The participants stated that physical therapy was planned with the therapist. Family support was described as support
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and as demand. The parents were driving the participants to be independent in everyday functions. Some parents demanded equal activity and participation from all of the siblings. This demand was perceived to enhance independent functioning. Health care professionals encouraged the participants to be independent, and some participants perceived that the
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time in rehabilitation helped them to become more independent and, to grow up. Friends and peers were part of a supporting network that assisted and supported as needed. High/category III: Active agency in daily life In this category, the participants reported that they are challenging the limits of their physical functioning (Table 2). The reports indicated optimal use of physical functioning capacity and motivation for physical effort and exertion. The participants challenged themselves in the environment. The environment was not perceived as a barrier; however, only one participant 8 Page 9 of 18
saw it as something that could and should be changed. The free use of different transportation options was also reported. The use of rehabilitation services was described as independent and user-driven. Physical therapy was perceived as a choice rather than a requirement. The nature of the support was described as participation in various networks and support was sought when needed and selected from different options.
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DISCUSSION
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The results of this study showed that, according to all of the participants, the operation had a clear positive effect on their gait posture and walking ability. This result is in agreement with
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previous quantitative studies [17]. The postoperative improvement in the GPS, more than twice the Minimal Clinically Important Difference (MCID) [27] in this study supports this result.
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The participants’ perceptions were that the operation had enabled them to maintain future
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walking function. Some participants enjoyed moving more and were motivated to maintain their mobility by being physically active. Promoting physical activity and fitness in children
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with CP is important to enhance overall health and to prevent secondary problems such as muscle weakness, low cardiovascular capacity and joint contractures [28]. Based on an inter-
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view study on adults with CP, enjoyment was one of the key factors in physical therapy and physical activity adherence [29]. According to our results improved mobility after SEMLS has the potential to enhance physical activity, which could be noted and emphasized in postoperative rehabilitation. The participants reported various challenges when functioning in the
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environment. Some participants avoided challenging situations and others developed coping strategies. The participants made individual choices in mobility based on environmental and personal factors, such as the family culture, personal habits, personality and associated impairments. These findings have similarities with a study by Palisano et al [30]. Their results suggest that mobility choices are based on the importance of being self-sufficient, and on environmental factors, safety and efficiency in mobility. The writers stressed the need to involve young patients in the planning of their mobility choices in their environment. Based on 9 Page 10 of 18
our study emphasizing participation and practicing in the real-life environment could enhance physical activity and independence after surgery. This finding could be an important factor in achieving higher functional performance in the environment and in maintaining the achieved level of physical functioning after SEMLS. The perceptions on the nature of support in families varied widely. Some participants expressed that the demand to be active and independent when growing up, had improved their
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functioning. The readiness for increasing autonomy varies from family to family. In a study by
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Magill- Evans [31], only one family out of six aimed to help their children towards life experiences typical for same-aged young people without disabilities. In our study, perceptions of
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rehabilitation varied from therapist-driven to user-driven practice. The change towards clientcentered and participation based rehabilitation practice may take time. The goals of therapy
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became clearer and the motivation to practice increased after the operation. Our results indi-
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cate, that it would be important to enhance independence from the therapy towards a userdriven use of rehabilitation services particularly after the intensive postoperative rehabilitation
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period.
We were interested in adolescents’ perceptions of physical functioning after surgery.
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We identified three levels of functioning in the real-life environment. The effect of better physical functioning capacity, gained after surgery by all of the participants did not necessarily result in increased self-efficacy or more independent functioning in daily life. The perception of actual physical performance in environment varied greatly. The
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only participant (GMFC III) whose GPS result deteriorated reported a positive change in walking ability and was highly active and independent in the environment. This variation may be explained by differences in personal agency, the capability to have control over one’s life. [26]. Our healthcare practice is perhaps more focused on physical performance than on enhancing age typical participation and independency in adolescents with CP. The time of surgery and postoperative rehabilitation could be a potential turning point towards active agency for adolescents with CP. Our rehabili10 Page 11 of 18
tation practice and evaluation of the outcome after multilevel surgery should be more focused on active agency in collaboration with adolescents with CP and their families.
CONCLUSIONS According to our results, single-event multilevel surgery had a positive effect on the participants’ physical functioning capacity, particularly experienced as better walking
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ability. This was also seen as improved GPS results. Surgery enhanced physical activ-
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ity and the motivation to maintain mobility in the future. The perceptions of the effect of surgery on physical functioning in the real-life environment varied from challenge
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avoiding, support seeking agency to highly active, independent agency in daily life. A positive change in physical functioning capacity does not enhance independence and
Conflicts of interest
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Research highlights
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There are no conflicts of interest
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physical functioning in the real-life environment in all patients.
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Young adults with CP express that SEMLS improves physical functioning capacity
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SEMLS has the potential to enhance physical activity
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The effect of surgery on physical functioning in the real-life environment varies
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Rehabilitation practice should be focused on enhancing independent, active agency
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[31] Magill-Evans J, Wiart L, Darrah J, Kratochvil M. Beginning the transition to adulthood: The experiences of six families with youths with cerebral palsy. Phys. and Occup. Ther Pediatr 2005; 25: 19-36.
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6. Table(s)
Table 1. Participants’ characteristics, mobility in the environment and Gait Profile Scores (preoperatively and 5 years after operation) Gender
pant
Age in
GMFCS
years
pre/post
15
II / II
Operations*
GPS Pre SEMLS
Environment
and 5years Post SEMLS ***
female
R: Ham.+Add.+Derot.fem.
Pre: 12.7
L: Ham.+Add.+Derot.fem.
Post 5y: 9.6
rural
Taxi to school and physical therapy, public transportation occasionally.
Diff.: 3.1
3
female
female
17
19
II / II
II / II
Able to walk 2km or more.
R: Ham.+Add.+Gracil.+Derot.fem.
Pre: 16.9
L: Ham.+Add.+Gracil.+Rectus
Post 5y: 12.7
transf.+Derot.fem.
Diff.: 4.2
R: Ham.+Derot.fem
Pre: 17.1
suburb/city
an
2
rural
M
Post 5y: 12.1 Diff.: 5.0 4
male
18
III / II
III / III
7
female
female
20
21
III /III
IV / III
male
16
17
III / III
III / III
Independent in most environments with no gait aid.
town**
Uses public transportation everywhere, uses wheelchair in a very challenging environments.
R: Ham.+Add.+Gracil.+Derot.fem.
Pre: 26.3
L: Ham.+Add.+Gracil.+Derot.fem.
Post 5y: 18.6
Able to walk 2km or more. suburb/city
female
22
III / III
Independent with walker indoors (home). Uses wheelchair in longer distances and needs occasional assistance (pushing). Taxi to school and to the city, does not use public transportation.
R: Ileops.+Ham.+Gastroc.+
Pre: 14.7
suburb/small town
Derot.fem.+Derot.tib.
Post 5y: 10.6
Uses public transportation, drives a car, electric mobility when shopping etc.
L: Ileops.+Ham.+Gastroc.
Diff.: 4.1
Able to walk up to 2km (with walker).
R: Ham.+Add.+Gracil.+ Gastroc.+
Pre: not able to
Derot.fem.
walk
Uses wheelchair and electric mobility in longer distances.
L: Ham.+Add.+Gracil.+
Post 5y: 10.1
Taxi to school, prefers car to taxi with friends or family otherwise.
rural/ small town
Independent indoors with canes, independent outdoors with walker.
Independent with walker indoors (home), need for assistance in community (indoors and outdoors).
Does not use public transportation. Able to walk up to 2km (indoors with walker).
R: Ham.+Add.+Gracil.+Foot
Pre: 13.1
L: Ham.+Add.+Gracil.+Foot
Post 5y: 11.8
suburb/city
R: Ham.+Gastroc.
Pre: 16.2
L: Ham.+Gastroc.
Post 5y: 17.9
Independent indoors (home) with no gait aid, uses walker indoors elsewhere. Uses wheelchair in longer distances, electric mobility when shopping.
Diff.: 1.3
Able to walk up to 2km, (with walker). suburb/small town
Independent indoors (home) with canes and elsewhere with walker (indoors and outdoors). Uses wheelchair in longer distances, uses taxi and public transportation independently.
Diff.: -1.7 10
Uses public transportation.
Post 5y: 9.3
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9
female
Independent in all environments with no gait aid.
L: Ham.+Add.+Gastroc.
Gastroc.+Derot.fem.+Foot
8
Able to walk up to 2km.
Able to walk up to 2km.
Diff.: 7.7
6
Taxi to school, does not use public transportation.
suburb/small
d
19
Uses wheelchair in longer distances and needs occasional assistance (pushing).
Pre: 16.6
ep te
female
Independent indoors with no gait aid.
R: Ham.+Add.+Gastroc.
Diff.: 7.3 5
Independent in all environments with no gait aid.
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1
Mobility in environment
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Partici-
Able to walk up to 2km (with walker).
R:Ham.+Add.+Gracil.+
Pre: 12.9
suburb/city**
Gastroc.+Rect.transf.
Post 5y: 10.3
Independent in all environments with canes, no wheelchair. Uses public transportation, sometimes a taxi.
L: Ham.+Add.+Gracil.+Gastroc.+
Diff.: 2.6
Able to walk up to 2km, (with canes).
Rectus transf.+Derot.fem. *Add.=Adductor release, Ileops.=Ileopsoas lengthening, Ham.=Hamstring lengthening, Gracil.=Gracilis lengthening, Gastroc.=Gastrocnemius lengthening, Rectus transf.=Rectus femoris transfer, Derot.Fem.= Derotational femoral osteotomy, Derot.Tib.=Derotational Tibial Osteotomy, Foot = Bony correction of the foot. **Participants who live independently, others live with their families. ***GPS Gait Profile Score. Pre= preoperatively, Post= 5 years after operation, SEMLS= Single Event Multilevel Surgery
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6. Table(s)
Table 2. Adolescents’ perceptions five years after single-event multilevel surgery. Excerpts present the original data and include gender (female/male), age in years and GMFCS level.
THEMES OF PERCEPTIONS: Physical functioning
Agency in rehabilitation
Challenging the limits of physical functioning
Active in challenging the environment
Independent rehabilitation service user
“I am challenging myself when I carry these heavy bags up here” F: 22y GMFCS II
“There will always be these situations (challenges in environment) but you just have to be creative” F: 20y, GMFCS III
Improvement in independent mobility
Motivation to cope in challenging environments
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” Before I used wheelchair like to the store, now I can walk longer distances” M: 18y, GMFCS II
”Now I use wheelchair only when I go to some gigs” (De-
Improvement in body function, structure and balance
Challenge avoiding
“My knees were crooked, now it doesn't hurt that much and I don’t fall as often and everything and it looks better” F: 15y GMFCS II
” I can’t shout to total strangers, if somebody could help me” F: 21y, GMFCS III
scribing change after surgery) M: 18y,
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Developing/II: Active in the environment
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Basic/I: Challenge avoiding functioning
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High/III: Active agency in daily life
GMFCS II
Active agency in various networks
”The responsibility (in rehabilitation services) is transferred to me” F: 22y GMFCS II
“I don’t want my personal assistant in my work practice, the lady in the cafeteria helps me out” F: 21y, GMFCS III
Active participation in rehabilitation
Part of an activity supporting network
”She (referring to her physical therapist) lets me decide a lot, it feels really good” F: 19y, GMFCS III
“I have the same rights and duties” (as sister in the family). Then you have to try to do it yourself” M:17y, GMFCS III
Dependent on therapy
Care and support seeking
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HIERARCY OF THE DESCRIPTION CATEGORIES ON FUNCTIONING
The nature of support
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Strategies in the environment
” It would be horrible for me to have physical therapy just once a week” F: 20y, GMFCS III
“A lot of responsibility was loaded on me. I need understanding and support” F: 22y GMFCS II
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7. Figure(s)
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Figure 1. Process of analysis: Forming the categories of description
Themes Categories
Structure and hierarchy of perceptions
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All the different individual perceptions (understanding and experiences) concerning the themes
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Variation
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te
d
M
an
The main themes the participants discuss concerning the research question
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S0966-6362(14)00758-9 http://dx.doi.org/doi:10.1016/j.gaitpost.2014.11.005 GAIPOS 4353
To appear in:
Gait & Posture
Received date: Revised date: Accepted date:
10-7-2013 12-11-2014 16-11-2014
Please cite this article as: Lehtonen K, M¨aenp¨aa¨ H, Piirainen A, Does Single-Event Multilevel Surgery Enhance Physical Functioning in The Real-Life Environment in Children and Adolescents with Cerebral Palsy (CP)?: Patient perceptions five years after surgery, Gait and Posture (2014), http://dx.doi.org/10.1016/j.gaitpost.2014.11.005 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
*4. Title Page (with authors and addresses)
DOES SINGLE-EVENT MULTILEVEL SURGERY ENHANCE PHYSICAL FUNCTIONING IN THE REAL-LIFE ENVIRONMENT IN CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY (CP)?: Patient perceptions five years after surgery.
Krista Lehtonen, MSc.PT Metropolia University of Applied Sciences, Helsinki University of Jyväskylä, Department of Health Sciences
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Puoshaankuja 8 02480 Kirkkonummi
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Finland
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[email protected]
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Helena Mäenpää, MD, PhD.
Helsinki University Central Hospital, Department of Paediatric and Adolescent Diseases
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[email protected]
Arja Piirainen, PhD, PT
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[email protected]
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University of Jyväskylä, Department of Health Sciences
Acknowledgements
The authors thank Tuula Niemelä, Nea Vänskä, the personnel in University Hospital Chil-
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dren’s rehabilitation unit and our participants for their contributions during the study
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*5. Manuscript
DOES SINGLE-EVENT MULTILEVEL SURGERY ENHANCE PHYSICAL FUNCTIONING IN THE REAL-LIFE ENVIRONMENT IN CHILDREN AND ADOLESCENTS WITH CEREBRAL PALSY (CP)?: Patient perceptions five years after surgery.
ABSTRACT Orthopedic procedures are a method of treating gait deviations and musculoskeletal pathol-
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ogy that develop with age in cerebral palsy (CP). Recently single-event multilevel surgery (SEMLS) has become common practice. Although there is evidence that SEMLS could im-
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prove gait, it is unclear whether it will enhance overall physical functioning and coping strategies in the real-life environment. It is unclear how improved walking capacity affects actual
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functioning and enables greater independence. The aim of this study was to examine the
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perceptions of adolescents concerning the results of surgery on personal physical functioning in the environment five or more years after SEMLS. In this study, qualitative data were
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gathered by open interviews and analysed using phenomenographic approach, which aims to study variation in human understanding and perceptions of the phenomenon in question.
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Gait Profile Score (GPS) was used to describe the objective change. The results indicate that SEMLS had a clear positive effect on the participants’ physical functioning capacity, particu-
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larly experienced as better walking ability. GPS Improved by 3.5° five years postoperatively. Surgery could enhance physical activity and the motivation to maintain mobility in the future. The perceptions of the effect of surgery on physical functioning in the real-life environment varied from a challenge-avoiding, support-seeking agency to a highly active, independent
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agency in daily life. Our rehabilitation practice after multilevel surgery should be more focused on enhancing active agency in collaboration with adolescents with CP and their families.
Keywords: Cerebral Palsy; Single-event multilevel surgery; Gait; Physical Functioning; Physical Activity; Experience; Perception 1 Page 2 of 18
INTRODUCTION Cerebral palsy (CP) is defined as a group of motor disorders caused by a non-progressive disturbance in the developing brain. Although the injury is by nature non-progressive, musculoskeletal difficulties may increase with age [1]. A deterioration of functional abilities is frequently seen with respect to walking function. Adults with CP might lose their ability to walk,
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and walking distances could be reduced [2, 3]. Reported causes are increasing joint contrac-
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tures, pain, and fatigue as well as, reduced physical activity, balance and muscle strength [2, 4, 5]. The deterioration in mobility could be associated with the severity of the physical im-
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pairment [4].
Orthopedic procedures are one method of treating gait deviations and musculoskeletal pa-
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thology that develop with age. Recently single-event multilevel surgery (SEMLS) has be-
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come common practice. In SEMLS, musculoskeletal pathology is corrected in one operation by multiple procedures on different lower limb levels [6] Based on our survey of literature fo-
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cusing on the overall outcome of SEMLS from 2002 to date, using the Medline, Cinahl and Cochrane electronic databases, the focus on the studies of SEMLS outcome has been on
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body functions and structure classified according to World Health Organization International Classification of Functioning, Disability and Health (ICF) domains [7]. Improvements after surgery have been reported, especially in gait pattern [8, 9, 10, 11]. Gait velocity and step length might increase after surgery [10, 11]. Overall gait indexes, such as the GGI (Gilette
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Gait Index), the GDI (Gait Deviation Index) and the GPS (Gait Profile Score), show improvements after surgery [12, 13, 14, 15]. In the long-term follow up, the gait improvements might change towards the preoperative condition [13, 15]; however the improvement in gait seen in the overall gait indexes shows significant improvements 5 years postoperatively (15). Individual experiences and coping strategies with environmental factors might be important factors in mobility changes over time [16].
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In the ICF framework, the activities and participation domains are defined as the execution of action and involvement in life situations [7]. Outcome measures evaluating motor function, functional gait, health and quality of life have been used to study the outcome of SEMLS in these domains. The results have varied [17]. In a multicenter study by Gorton et al [14], no differences were found in the Gross Motor Function Measure (GMFM) scores between a surgical group of seventy-five children with spastic CP and a matched control group. In the only
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published randomized controlled study, the surgical group had a significant and clinically
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marked improvement in gait 12 and 24 months after surgery. Improvements in the GMFM, the Child Health Questionnaire physical function domain (CHQ-PF50) and the Functional
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Mobility Scale (FMS) were found at the twenty-four months follow-up in this study [12]. The GMFCS level appears to be stable in the majority of patients after surgery despite the im-
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provement in gait [18]. Cuomo et al [19] found improvements in the quality of life measures in
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the physical function related sections after surgery; however SEMLS did not have an effect on perception of functional wellbeing of the child or on perceptions of pain and happiness of
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the child or parents. The writers conclude that psychosocial well-being might not be directly correlated to functional well-being, which has also been found by others [20]. Gorton et al.
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[13] found changes in the Pediatric Quality of Life Questionnaire (PedsQL) physical functioning sub-score results and in the Pediatric Outcomes Data Collection Instrument (PODCI ) parent expectations results; however the authors conclude that these changes did not exceed the minimum clinical difference. Adolescents’ experiences of SEMLS have been studied
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by Capjon and Björk [21]. Most, but not all of the adolescents and parents, experienced positive changes in mobility and social involvement. There is evidence that SEMLS can improve gait and might have a positive effect on overall physical functioning [17]. It is unclear, however, if and how SEMLS would enhance physical functioning in the real-life environment, and how improved functioning capacity affects the actual functioning performance and enables more independent living. It is possible that the
3 Page 4 of 18
outcome measures that have been used do not consider all of the changes in functioning after SEMLS.
This study is part of a project evaluating the long-term effectiveness of SEMLS in children with CP. First, the aim of this study was to examine the perceptions of adolescents of the relevance of the surgery for their physical functioning and coping in the real-life environ-
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ment. Second, the aim was to improve our planning and rehabilitation process in SEMLS
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towards a client-centered service and to focus our interventions and rehabilitation to challenges that are relevant to this patient group. The research question is as follows: What are
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adolescents’ perceptions of physical functioning in their environment five or more years after
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a single-event multilevel surgery?
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METHODS Participants
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The participants were 10 adolescent or young adults with CP (age range 15-22 years at interview, operations/side mean 4.2 range 2-7/side). The participants were recruited from the
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hospital patient files. Inclusion criteria were: (1) diagnosis of spastic diplegic CP; (2) SEMLS five or more years ago; (3) no prior corrective surgery and (4) the willingness to participate. SEMLS was defined as a procedure in which all of the patient’s orthopedic deformities are corrected in one single surgical procedure [6]. Patients with communicative or cognitive defi-
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cits were excluded. The first 10 patients we could contact were included. All patients had instrumented gait analysis (IGA) before and 5 years after the surgery. All of the participants received intensive postoperative rehabilitation in a hospital ward for 4-10 weeks and physical therapy 2-3 times a week at home for two years. After the two-year postoperative phase, the intensity varied individually from short periods of physical therapy to regular weekly sessions. The participants’ characteristics are presented in Table 1. The expanded and revised Gross Motor Function Classification System (GMFCS-E&R) was used to describe the severity of the 4 Page 5 of 18
condition [22]. Ethical approval for the study was obtained from the University Hospital Ethical Committee. Written informed consent was obtained before participation from all of the participants.
Data collection and analysis Qualitative data were gathered by interviewing the patients. The interviews were conducted
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individually in each participant’s home environment. An open-ended interview was used to
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cover all of the aspects of functioning relevant to our patient group. The interview started with a key question where all of the participants were asked to describe their functioning after sur-
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gery. Follow-up questions were used to specify the content, ensuring that the following areas of interest were covered: (1) current functioning, environment and life situation; (2) the effect
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of SEMLS on functioning in the current situation and (3) the role of rehabilitation in the
varied from 32 to 155 minutes.
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SEMLS process. The sessions were taped and transcribed (164 pages), and the duration
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The transcribed data were analyzed using phenomenographic approach. Phenomenography aims to study variation in human understanding [23]. A conception is the basic unit of de-
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scription in phenomenographic research, including the ways of understanding and the ways of experiencing the phenomenon in question [24]. In this paper the term “perception” rather than “conception” is used for clarity. The aim in phenomenography is to identify the different perceptions and to study the relationships and structure of perceptions. The outcomes are
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presented as the themes in the interview data, and the variation within the themes are presented in categories. The categories describe the often-hierarchical structure of perceptions. The outcome presents the range of different meanings, the collective understanding, in the target group. [23]
In the first phase of the analysis the transcripts were read through several times. The goal was to identify the overall themes and to gather all of the participants’ statements concerning 5 Page 6 of 18
the phenomenon. The notes were collected and forming the categories began. The process of analysis is presented in Figure 1. As presented by Åkerlind [23], developing categories were continuously compared with the data which were resorted accordingly. The content of the categories and the relationships between the categories were modified in comparison to the original data.
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The GPS, which is calculated from gait kinematics and describes the overall gait pathology
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[25], was used to describe the objective change 5 years after SEMLS. Kinematic gait data were collected using six-camera Vicon 370 or eight-camera Vicon Nexus system and calcu-
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lated using Plug-in Gait (Oxford Metrix, Oxford, UK). The GPS was calculated for both legs on three individual gait cycles. The quantitative data were analyzed using SPSS 21 Statistics.
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Wilcoxon Signed Rank nonparametric test was used to detect significant difference between
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preoperative and five-year postoperative GPS results.
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RESULTS
The perceptions of functioning after SEMLS presented a complex view including per-
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sonal factors and choices, family dynamics and the role of rehabilitation. The term agency was used to describe this broad perspective on functioning. Agency refers to an ability to make things happen intentionally by planning, setting goals, acting and reflecting. It describes the capability to have control over one’s life. [26]. The percep-
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tions were described through four themes: physical functioning, strategies in the environment, agency in rehabilitation and the nature of support (Table 2). The variation in the perceptions within the themes formed three categories presenting a hierarchy in the functioning. The first category presents the basic level of functioning. The degree of the increase in independent activity and self-efficacy is presented in the second category. The third category describes an active, independent agency in daily life. (Table 2). Five years after operation there was a significant (p=0.011) improvement in GPS 6 Page 7 of 18
(mean difference 3.5°, 95% confidence interval 1.6, 5.4, n=9 due to one missing preoperative analysis). The GPS value of one participant deteriorated and improved in other cases. (Table 1). Basic/ category I: Challenge avoiding functioning In this basic category, all of the participants reported improvements in their body function and structure (Table 2). These improvements included improved and more extended posture, bet-
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ter alignment of the lower extremities and, increased muscle strength and joint mobility. A
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more aesthetic gait was experienced. The change was described as visible and concrete. It was easier to maintain balance in an upright position and falling occurred less often than be-
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fore the operation. The experiences concerning pain varied. Some experienced changes overtime. This change was seen as going back to the old movement pattern and was experi-
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enced in increased muscle tightness. The condition was perceived better than before the op-
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eration.
Activity in the environment was perceived as challenging. The participants expressed that
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they avoid challenging environmental situations. The common challenges were uneven terrain, long distances, crowded places, heavy doors, stairs and high shelves in stores. The par-
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ticipants avoided communicating with strangers. Physical therapy was described as therapistdriven. The participants expressed that they could not cope without therapy and that therapy was planned and conducted by the therapist. The nature of support was perceived as care and continuous assistance. Support was pro-
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vided by parents and health care professionals. The parents acted as personal assistants and were strongly involved in the participants’ everyday life. In health care, the participants liked having the familiar personnel around and enjoyed undivided attention and encouragement. Some of the participants experienced, that they were given too much responsibility during the postoperative rehabilitation and that the expectations were too high for them. Developing/ category II: Active in the environment
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In this category, the participants reported that their physical functioning and mobility in environment had improved after surgery (Table 2). The operation had enabled them to maintain the future ability to walk. The changes in mobility were described as longer walking distances, effortlessness and less fatigue. The participants expressed, that they enjoyed moving more and that they were motivated to be physically active now and in the future. Physical activity was considered an important factor in maintaining functional abilities in the future.
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The participants reported various strategies in coping with their environment. Environmental
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factors affected their mobility choices; however in this category, the factors did not lead to avoidance. The choices were individual and were made for safety and self-efficacy and occa-
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sionally for comfort. Carrying, reaching and handling objects while upright were a challenge for most participants even if they did not use a gait aid. Personality and family culture were
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relevant factors when choices were made, i.e., when choosing between using a car, taxi and
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other public transportation.
Physical therapy and home exercise were considered important in maintaining the results.
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The goals of therapy were clearer than before the operation. The participants stated that physical therapy was planned with the therapist. Family support was described as support
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and as demand. The parents were driving the participants to be independent in everyday functions. Some parents demanded equal activity and participation from all of the siblings. This demand was perceived to enhance independent functioning. Health care professionals encouraged the participants to be independent, and some participants perceived that the
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time in rehabilitation helped them to become more independent and, to grow up. Friends and peers were part of a supporting network that assisted and supported as needed. High/category III: Active agency in daily life In this category, the participants reported that they are challenging the limits of their physical functioning (Table 2). The reports indicated optimal use of physical functioning capacity and motivation for physical effort and exertion. The participants challenged themselves in the environment. The environment was not perceived as a barrier; however, only one participant 8 Page 9 of 18
saw it as something that could and should be changed. The free use of different transportation options was also reported. The use of rehabilitation services was described as independent and user-driven. Physical therapy was perceived as a choice rather than a requirement. The nature of the support was described as participation in various networks and support was sought when needed and selected from different options.
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DISCUSSION
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The results of this study showed that, according to all of the participants, the operation had a clear positive effect on their gait posture and walking ability. This result is in agreement with
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previous quantitative studies [17]. The postoperative improvement in the GPS, more than twice the Minimal Clinically Important Difference (MCID) [27] in this study supports this result.
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The participants’ perceptions were that the operation had enabled them to maintain future
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walking function. Some participants enjoyed moving more and were motivated to maintain their mobility by being physically active. Promoting physical activity and fitness in children
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with CP is important to enhance overall health and to prevent secondary problems such as muscle weakness, low cardiovascular capacity and joint contractures [28]. Based on an inter-
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view study on adults with CP, enjoyment was one of the key factors in physical therapy and physical activity adherence [29]. According to our results improved mobility after SEMLS has the potential to enhance physical activity, which could be noted and emphasized in postoperative rehabilitation. The participants reported various challenges when functioning in the
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environment. Some participants avoided challenging situations and others developed coping strategies. The participants made individual choices in mobility based on environmental and personal factors, such as the family culture, personal habits, personality and associated impairments. These findings have similarities with a study by Palisano et al [30]. Their results suggest that mobility choices are based on the importance of being self-sufficient, and on environmental factors, safety and efficiency in mobility. The writers stressed the need to involve young patients in the planning of their mobility choices in their environment. Based on 9 Page 10 of 18
our study emphasizing participation and practicing in the real-life environment could enhance physical activity and independence after surgery. This finding could be an important factor in achieving higher functional performance in the environment and in maintaining the achieved level of physical functioning after SEMLS. The perceptions on the nature of support in families varied widely. Some participants expressed that the demand to be active and independent when growing up, had improved their
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functioning. The readiness for increasing autonomy varies from family to family. In a study by
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Magill- Evans [31], only one family out of six aimed to help their children towards life experiences typical for same-aged young people without disabilities. In our study, perceptions of
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rehabilitation varied from therapist-driven to user-driven practice. The change towards clientcentered and participation based rehabilitation practice may take time. The goals of therapy
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became clearer and the motivation to practice increased after the operation. Our results indi-
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cate, that it would be important to enhance independence from the therapy towards a userdriven use of rehabilitation services particularly after the intensive postoperative rehabilitation
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period.
We were interested in adolescents’ perceptions of physical functioning after surgery.
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We identified three levels of functioning in the real-life environment. The effect of better physical functioning capacity, gained after surgery by all of the participants did not necessarily result in increased self-efficacy or more independent functioning in daily life. The perception of actual physical performance in environment varied greatly. The
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only participant (GMFC III) whose GPS result deteriorated reported a positive change in walking ability and was highly active and independent in the environment. This variation may be explained by differences in personal agency, the capability to have control over one’s life. [26]. Our healthcare practice is perhaps more focused on physical performance than on enhancing age typical participation and independency in adolescents with CP. The time of surgery and postoperative rehabilitation could be a potential turning point towards active agency for adolescents with CP. Our rehabili10 Page 11 of 18
tation practice and evaluation of the outcome after multilevel surgery should be more focused on active agency in collaboration with adolescents with CP and their families.
CONCLUSIONS According to our results, single-event multilevel surgery had a positive effect on the participants’ physical functioning capacity, particularly experienced as better walking
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ability. This was also seen as improved GPS results. Surgery enhanced physical activ-
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ity and the motivation to maintain mobility in the future. The perceptions of the effect of surgery on physical functioning in the real-life environment varied from challenge
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avoiding, support seeking agency to highly active, independent agency in daily life. A positive change in physical functioning capacity does not enhance independence and
Conflicts of interest
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Research highlights
ed
There are no conflicts of interest
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physical functioning in the real-life environment in all patients.
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Young adults with CP express that SEMLS improves physical functioning capacity
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SEMLS has the potential to enhance physical activity
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The effect of surgery on physical functioning in the real-life environment varies
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Rehabilitation practice should be focused on enhancing independent, active agency
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[14] Gorton GE, Abel MF, Oeffinger DJ, Bagley A, Rogers SP, Damiano D, Romness M, Tylkowski C. A prospective cohort study of the effects of lower extremity orthopedic surgery on outcome measures in ambulatory children with cerebral palsy J Pediatr Orthop 2009; 29: 903-9 [15] Thomason P, Selber P,Graham HK. Single event multilevel surgery in children with bilateral spastic cerebral palsy:A 5 year prospective cohort study.Gait Posture 2013;37:23-8. [16] Opheim A, McGinley JL, Olsson E, Stanghelle .K, Jahnsen R. Walking deterioration and gait analysis in adults with spastic bilateral cerebral palsy. Gait Posture 2013; 37:165-71. 12 Page 13 of 18
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6. Table(s)
Table 1. Participants’ characteristics, mobility in the environment and Gait Profile Scores (preoperatively and 5 years after operation) Gender
pant
Age in
GMFCS
years
pre/post
15
II / II
Operations*
GPS Pre SEMLS
Environment
and 5years Post SEMLS ***
female
R: Ham.+Add.+Derot.fem.
Pre: 12.7
L: Ham.+Add.+Derot.fem.
Post 5y: 9.6
rural
Taxi to school and physical therapy, public transportation occasionally.
Diff.: 3.1
3
female
female
17
19
II / II
II / II
Able to walk 2km or more.
R: Ham.+Add.+Gracil.+Derot.fem.
Pre: 16.9
L: Ham.+Add.+Gracil.+Rectus
Post 5y: 12.7
transf.+Derot.fem.
Diff.: 4.2
R: Ham.+Derot.fem
Pre: 17.1
suburb/city
an
2
rural
M
Post 5y: 12.1 Diff.: 5.0 4
male
18
III / II
III / III
7
female
female
20
21
III /III
IV / III
male
16
17
III / III
III / III
Independent in most environments with no gait aid.
town**
Uses public transportation everywhere, uses wheelchair in a very challenging environments.
R: Ham.+Add.+Gracil.+Derot.fem.
Pre: 26.3
L: Ham.+Add.+Gracil.+Derot.fem.
Post 5y: 18.6
Able to walk 2km or more. suburb/city
female
22
III / III
Independent with walker indoors (home). Uses wheelchair in longer distances and needs occasional assistance (pushing). Taxi to school and to the city, does not use public transportation.
R: Ileops.+Ham.+Gastroc.+
Pre: 14.7
suburb/small town
Derot.fem.+Derot.tib.
Post 5y: 10.6
Uses public transportation, drives a car, electric mobility when shopping etc.
L: Ileops.+Ham.+Gastroc.
Diff.: 4.1
Able to walk up to 2km (with walker).
R: Ham.+Add.+Gracil.+ Gastroc.+
Pre: not able to
Derot.fem.
walk
Uses wheelchair and electric mobility in longer distances.
L: Ham.+Add.+Gracil.+
Post 5y: 10.1
Taxi to school, prefers car to taxi with friends or family otherwise.
rural/ small town
Independent indoors with canes, independent outdoors with walker.
Independent with walker indoors (home), need for assistance in community (indoors and outdoors).
Does not use public transportation. Able to walk up to 2km (indoors with walker).
R: Ham.+Add.+Gracil.+Foot
Pre: 13.1
L: Ham.+Add.+Gracil.+Foot
Post 5y: 11.8
suburb/city
R: Ham.+Gastroc.
Pre: 16.2
L: Ham.+Gastroc.
Post 5y: 17.9
Independent indoors (home) with no gait aid, uses walker indoors elsewhere. Uses wheelchair in longer distances, electric mobility when shopping.
Diff.: 1.3
Able to walk up to 2km, (with walker). suburb/small town
Independent indoors (home) with canes and elsewhere with walker (indoors and outdoors). Uses wheelchair in longer distances, uses taxi and public transportation independently.
Diff.: -1.7 10
Uses public transportation.
Post 5y: 9.3
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9
female
Independent in all environments with no gait aid.
L: Ham.+Add.+Gastroc.
Gastroc.+Derot.fem.+Foot
8
Able to walk up to 2km.
Able to walk up to 2km.
Diff.: 7.7
6
Taxi to school, does not use public transportation.
suburb/small
d
19
Uses wheelchair in longer distances and needs occasional assistance (pushing).
Pre: 16.6
ep te
female
Independent indoors with no gait aid.
R: Ham.+Add.+Gastroc.
Diff.: 7.3 5
Independent in all environments with no gait aid.
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1
Mobility in environment
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Partici-
Able to walk up to 2km (with walker).
R:Ham.+Add.+Gracil.+
Pre: 12.9
suburb/city**
Gastroc.+Rect.transf.
Post 5y: 10.3
Independent in all environments with canes, no wheelchair. Uses public transportation, sometimes a taxi.
L: Ham.+Add.+Gracil.+Gastroc.+
Diff.: 2.6
Able to walk up to 2km, (with canes).
Rectus transf.+Derot.fem. *Add.=Adductor release, Ileops.=Ileopsoas lengthening, Ham.=Hamstring lengthening, Gracil.=Gracilis lengthening, Gastroc.=Gastrocnemius lengthening, Rectus transf.=Rectus femoris transfer, Derot.Fem.= Derotational femoral osteotomy, Derot.Tib.=Derotational Tibial Osteotomy, Foot = Bony correction of the foot. **Participants who live independently, others live with their families. ***GPS Gait Profile Score. Pre= preoperatively, Post= 5 years after operation, SEMLS= Single Event Multilevel Surgery
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6. Table(s)
Table 2. Adolescents’ perceptions five years after single-event multilevel surgery. Excerpts present the original data and include gender (female/male), age in years and GMFCS level.
THEMES OF PERCEPTIONS: Physical functioning
Agency in rehabilitation
Challenging the limits of physical functioning
Active in challenging the environment
Independent rehabilitation service user
“I am challenging myself when I carry these heavy bags up here” F: 22y GMFCS II
“There will always be these situations (challenges in environment) but you just have to be creative” F: 20y, GMFCS III
Improvement in independent mobility
Motivation to cope in challenging environments
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” Before I used wheelchair like to the store, now I can walk longer distances” M: 18y, GMFCS II
”Now I use wheelchair only when I go to some gigs” (De-
Improvement in body function, structure and balance
Challenge avoiding
“My knees were crooked, now it doesn't hurt that much and I don’t fall as often and everything and it looks better” F: 15y GMFCS II
” I can’t shout to total strangers, if somebody could help me” F: 21y, GMFCS III
scribing change after surgery) M: 18y,
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Developing/II: Active in the environment
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Basic/I: Challenge avoiding functioning
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High/III: Active agency in daily life
GMFCS II
Active agency in various networks
”The responsibility (in rehabilitation services) is transferred to me” F: 22y GMFCS II
“I don’t want my personal assistant in my work practice, the lady in the cafeteria helps me out” F: 21y, GMFCS III
Active participation in rehabilitation
Part of an activity supporting network
”She (referring to her physical therapist) lets me decide a lot, it feels really good” F: 19y, GMFCS III
“I have the same rights and duties” (as sister in the family). Then you have to try to do it yourself” M:17y, GMFCS III
Dependent on therapy
Care and support seeking
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HIERARCY OF THE DESCRIPTION CATEGORIES ON FUNCTIONING
The nature of support
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Strategies in the environment
” It would be horrible for me to have physical therapy just once a week” F: 20y, GMFCS III
“A lot of responsibility was loaded on me. I need understanding and support” F: 22y GMFCS II
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7. Figure(s)
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Figure 1. Process of analysis: Forming the categories of description
Themes Categories
Structure and hierarchy of perceptions
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All the different individual perceptions (understanding and experiences) concerning the themes
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Variation
Ac ce p
te
d
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The main themes the participants discuss concerning the research question
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