The clinical effectiveness and personal experience of supported standing for children with cerebral palsy: a comprehensive systematic review protocol

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Abstract

Review question/objective

The overall aim of this systematic review is to explore the uptake, clinical effectiveness, and personal experience of standing frame use for children with CP.

Review question/objective

The quantitative objectives are to identify:

Review question/objective

The qualitative objectives are to identify, for children with CP, and their families/caregivers:

Background

Cerebral palsy is the most frequent cause of motor disability in children and adolescents1 with a prevalence of 2 to 3 children per 1000 live births. It is defined as "a group of permanent disorders of the development of movement and posture, causing activity limitations that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior by epilepsy, and by secondary musculoskeletal problems").2(p.9) Although the initial damage to the central nervous system does not progress, over time, as the child develops symptoms can progress. For this reason a definitive diagnosis of CP is often not provided initially and can vary from 18 months to five years depending on presentation.2

Background

Cerebral Palsy affects the development of posture and movement. The severity of impairments is extremely varied. Motor symptoms include spasticity, cocontraction, loss of selective muscle control, and muscle weakness. If left unchecked they can lead to progressive musculoskeletal problems such as hip dysplasia, contracture and scoliosis.3 Based on evidence from large databases describing disease characteristics, it is estimated that approximately 35% of children are unable to stand independently, four percent are unable to stand at all, and almost one third of children are non-ambulant.4 These children spend most of their lives in a sitting or lying position and hence are at the particular risk of progression of these and additional deficits such as increased muscle stiffness, increased weakness, loss of range of movement and changes in bone development such as osteoporosis. Both primary deficits and their sequelae can have a significant impact on functional ability and CP is associated with an estimated €0.8 million in social and healthcare costs across the lifespan and increased carer burden.5,6

Background

In the UK assisted standing programs are routinely employed as part of the postural management approach for children with cerebral palsy who are unable to independently maintain well aligned standing or who have limited mobility in the upright position.7 A standing program refers to the use of adaptive equipment, for example, a standing frame that provides external, adjustable support to facilitate an upright position. The aim of these standing programs is to prevent or minimize motor symptoms, to encourage proper alignment, and to improve bone growth and bone mineral density through mechanical loading of the lower limbs and spine.8 A range of clinical benefits have been demonstrated which include; improved acetabular formation, prevention of hip dysplasia and improvements in bone density and gross motor development.8-14 Anecdotally, physiotherapists also site a number of additional benefits of assisted standing including: pressure relief, improved joint range of motion, soft tissue flexibility, promoting self-esteem and social interaction as well as accessing educational materials.15

Background

The introduction of postural management programs, such as supported standing, into the daily lives of children and their family unit requires commitment from both the child and their carer16, hence practical difficulties with implementing the activity may arise because of issues of acceptance, logistics, and tolerance.17 This is particularly pertinent when children are more severely disabled, the very group who are typically targeted for supported standing frame programs. Importantly, previous work indicates that the level of compliance in their involvement in supported standing programs may be a key factor in determining clinical outcomes.18 This highlights the importance of understanding the experiences of children, their family and carers, and gaining insight into the enablers and barriers of their compliance in participating in these programs in order to both inform service provision19 and the design of research studies aiming to evaluate their effectiveness.

Background

Currently there is little guidance regarding standing children with CP so individual health professionals (usually physiotherapists) are forced to decide the frequency, duration, type of standing regimen, and frame based on their clinical experience. In response to this, the National Institute of Clinical Excellence20 has identified the need for further research to investigate the clinical effectiveness of standing programs, particularly in the younger child, and in relation to the different durations of standing programs.

Background

Prior to undertaking further research, it is important to undertake a comprehensive review of the literature about the current state of evidence, hence the identified need for this systematic review (SR). An initial search of the literature identified two SRs examining studies which evaluated pediatric supported standing programs21,22; however, these reviews were not restricted to children with CP, instead including any population of children, and the search timeframes were restricted to trials published prior to October 2009 and August 2012 respectively. Also identified in our initial review was one SR specifically examining interventions targeted at children with CP and low bone mineral density10 which included three clinical trials of standing frame use in children with CP published prior to 2009. A further two SRs were unearthed which examined studies evaluating the effectiveness of common physical therapy interventions; however neither of these reviews included standing programs.23,24

Background

When comparing the results of the initial literature search of quantitative studies with the reference lists of Paleg, Glickman and Hough's SRs,10, 21, 22 it was noted that there were studies which had evaluated standing as an intervention in children with CP that had not been included in any of these reviews, namely a randomized controlled trial (RCT)25 and an observational study14; their lack of inclusion reflecting the time restrictions for the search strategies utilized in these SRs.10, 22 In addition, our initial search revealed one registered clinical trial26, which has the potential to publish data within the time frame of this SR. This supports the need for an updated SR regarding the clinical effectiveness of standing frame use with children with CP from a quantitative perspective.

Background

With regard to people's experience in relation to participating in the standing frame program, our initial search suggests that factors such as positioning, comfort and personal acceptance can significantly impact theduration and frequency of standing frame use.13, 16, 27These findings are similar to those expressed by parents of children with CP in qualitative research of closely related fields such as physiotherapy exercise programs.28 Furthermore, qualitative research in the related area of walking29 suggests that, as well as having physiological and functional benefits, standing may hold symbolic significance for both the child and their parents, which may also influence the level of uptake and compliance with standing frame programs. The literature search failed to identify any meta-synthesis of qualitative studies in this area, hence justifying the need for this to be incorporated within this proposed SR.

Background

In conclusion, it is suggested that this proposed SR will provide novel information. It is specific to children and adolescents with CP, will include studies other than RCTs, will only cover primary studies (not reviews), and will include a meta-synthesis of qualitative studies.

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