Comparison of intrathecal baclofen pump insertion and selective dorsal rhizotomy for nonambulatory children with predominantly spastic cerebral palsy.

OBJECTIVE: In nonambulatory children with predominantly spastic cerebral palsy (CP), the authors compared care needs, symptom burden, and complications after surgical treatment with either intrathecal baclofen (ITB) pump insertion or selective dorsal rhizotomy (SDR). The patients were treated at two Canadian centers with variability in practice pertaining to these surgical options. METHODS: The authors performed a retrospective analysis of nonambulatory children with predominantly spastic quadriplegic or diplegic CP who underwent treatment with ITB or SDR. These two strategies were retrospectively assessed by comparing patient data from the two treatment groups for demographic characteristics, outcomes, and complications. A partial least-squares analysis was performed to identify patient phenotypes associated with outcomes. RESULTS: Thirty patients who underwent ITB and 30 patients who underwent SDR were included for analysis. Patients in the ITB group were older and had lower baseline functional status, with greater burdens of spasticity, dystonia, pain, deformity, bladder dysfunction, and epilepsy than patients in the SDR group. In addition, children who underwent SDR had lower Gross Motor Function Classification System (GMFCS) levels and were less likely to experience complications than those who underwent ITB. However, children treated with SDR had fewer improvements in pain than children treated with ITB. A single significant latent variable explaining 88% of the variance in the data was identified. CONCLUSIONS: Considerable baseline differences exist within this pediatric CP patient population. Factors specific to individual children must be taken into account when determining whether ITB or SDR is the appropriate treatment.

Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis.

BACKGROUND: Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs. OBJECTIVE: The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity. METHODS: We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context. RESULTS: Parents of CMCs in our study made decisions based on a mental model of their child's illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions. CONCLUSIONS: Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child's unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values.

What makes difficult decisions so difficult?: An activity theory analysis of decision making for physicians treating children with medical complexity.

OBJECTIVE: Shared Decision-Making (SDM) has been advocated as an ideal model of decision-making in the medical encounter. Much of the research into SDM has focused on measuring if SDM is happening, or facilitating SDM by developing specific models and tools. Understanding SDM as an activity in context, has remained mostly absent from the research. This study sought to garner details on the actions, judgements and motives that comprise the activity of making a decision, in the context of a shared process between physicians and families of Children with Medical Complexity (CMC). METHODS: 11 physicians who treat CMC were interviewed. Activity Theory framework was employed to understand the complexity of the decision-making process in context. RESULTS: Ambiguous information, conflicting rules, and beliefs on roles all contribute to the difficulty of decision-making. A decision is achieved by allocating the decision to one party. CONCLUSION: Lack of tools, rules or beliefs that would assist sharing the decision between the physician and patient/family, contributes to the need to allocate the decision to one party. PRACTICE IMPLICATION: In developing SDM policies and tools, one must consider all aspects of the SDM activity system, and how they influence each other and the activity as a whole.

From knowledge translation theory to practice: developing an evidence to care hub in a pediatric rehabilitation setting.

Purpose: Ensuring evidence-informed care happens systematically and consistently is not easy in complex health facilities. This paper describes the evolution of knowledge translation infrastructure (Evidence to Care) within a pediatric rehabilitation hospital to address barriers to evidence-informed decision-making and accelerate research uptake to influence clinical care.Methods: Development of Evidence to Care involved a series of steps integrating knowledge translation principles, best evidence and stakeholder needs. Key aspects included: recognizing health system drivers and organizational enablers; establishing organizational structures and processes; building and operationalizing a strategic vision through activities and demonstration projects; and evaluating impact.Results: By way of a fully realized working model, two large-scale demonstration projects aligned with the Knowledge-to-Action Cycle have been completed. Audit findings demonstrate tangible examples of improving healthcare quality through investment in knowledge translation resources, processes and tailored evidence products. Critical enablers of this infrastructure include strong leadership commitment and ongoing direction, a dedicated expert team, alignment with strategic priorities and situated within organizational structures to link research, clinical care and education.Conclusions: With a replicable model, Evidence to Care addresses established health system barriers related to time, resources, skill and knowledge through dedicated knowledge translation specialists and knowledge brokers to facilitate knowledge translation practice.Implications for rehabilitationDeveloping dedicated knowledge translation infrastructure is both novel and relatively new in healthcare.Sharing step by step processes helps other organizations learn from field-tested experiences of what works and what doesn't in a particular setting.Involving stakeholders at all levels of an organization is key to valuing knowledge translation and fostering an evidence-friendly culture.Co-creating tailored knowledge products and planning for dissemination and uptake fosters inter-disciplinary collaboration and joint problem-solving among clients, families and providers.

Intrathecal baclofen versus selective dorsal rhizotomy for children with cerebral palsy who are nonambulant: a systematic review.

OBJECTIVE: Cerebral palsy (CP) is the most common childhood physical disability. Historically, children with hypertonia who are nonambulatory (Gross Motor Function Classification System [GMFCS] level IV or V) were considered candidates for intrathecal baclofen (ITB) therapy to facilitate care and mitigate discomfort. Selective dorsal rhizotomy (SDR) was often reserved for ambulant children to improve gait. Recently, case series have suggested SDR as an alternative to ITB in selected children functioning at GMFCS level IV/V. The objective for this study was to systematically review the evidence for ITB and SDR in GMFCS level IV or V children. METHODS: Medline, Embase, Web of Science, and Cochrane databases were systematically searched. Articles were screened using the following inclusion criteria: 1) peer-reviewed articles reporting outcomes after SDR or ITB; 2) outcomes reported using a quantifiable scale or standardized outcome measure; 3) patients were < 19 years old at the time of operation; 4) patients had a diagnosis of CP; 5) patients were GMFCS level IV/V or results were reported based on GMFCS status and included some GMFCS level IV/V patients; 6) article and/or abstract in English; and 7) primary indication for surgery was hypertonia. Included studies were assessed with the Risk of Bias in Non-Randomized Studies - of Interventions (ROBINS-I) tool. RESULTS: Twenty-seven studies met inclusion criteria. The most commonly reported outcomes were spasticity (on the Mean Ashworth Scale) and gross motor function (using the Gross Motor Function Measure), although other outcomes including frequency of orthopedic procedures and complications were also reported. There is evidence from case series that suggests that both ITB and SDR can lower spasticity and improve gross motor function in this nonambulatory population. Complication rates are decidedly higher after ITB due in part to the ongoing risk of device-related complications. The heterogeneity among study design, patient selection, outcome selection, and follow-up periods was extremely high, preventing meta-analysis. There are no comparative studies, and meaningful health-related quality of life outcomes such as care and comfort are lacking. This review is limited by the high risk of bias among included studies. Studies of SDR or ITB that did not clearly describe patients as being GMFCS level IV/V or nonambulatory were excluded. CONCLUSIONS: There is a lack of evidence comparing the outcomes of ITB and SDR in the nonambulatory CP population. This could be overcome with standardized prospective studies using more robust methodology and relevant outcome measures.

The role of social media in selective dorsal rhizotomy for children: information sharing and social support.

PURPOSE: Selective dorsal rhizotomy (SDR) is a surgical treatment for spasticity, primarily in cerebral palsy (CP). There is a growing trend for patients to seek medical information from their peers on social media platforms. This study qualitatively and quantitatively assessed the use of social media as an information-sharing and support-seeking tool by patients and caregivers. METHODS: A search was performed on Facebook, Twitter, and YouTube. Public information was quantitatively assessed by category, users, year of creation, and country of origin. Representative samples of comments and posts were then qualitatively assessed by thematic analysis. RESULTS: One hundred eighty-five Facebook groups and pages, 97 YouTube videos, and 14 Twitter accounts were identified, based in 13 countries. SDR and CP groups had a mean membership of 3063 and 2339, respectively; SDR and CP pages had a mean number of "likes" of 1650 and 10,711, respectively. Total YouTube video views were 593,135 (mean 6115). Total Twitter followers were 62,609 (mean 2160). Qualitative analysis identified seven categories of comments: emotional support and forming connections (22.34%), sharing information and advice (15.96%), appreciation and successes (31.91%), challenges and difficulties (8.51%), advertising/offering services (4.79%), inequities and access (4.79%), and social media as a second opinion (11.7%). CONCLUSIONS: This study outlines the use of social media platforms in the distribution of information regarding SDR. We highlight the importance placed by patients and caregivers on the advice of their peers. The current report should inform healthcare providers' interactions with patients with respect to information seeking and provision of support.

Centres for Leadership: a strategy for academic integration.

Purpose The purpose of this paper is to describe how an Academic Health Science Centre, providing pediatric rehabilitation services, research, and education, developed a Centres for Leadership (CfL) initiative to integrate its academic functions and embrace the goal of being a learning organization. Design/methodology/approach Historical documents, tracked output information, and staff members' insights were used to describe the ten-year evolution of the initiative, its benefits, and transformational learnings for the organization. Findings The evolutions concerned development of a series of CfLs, and changes over time in leadership and management structure, as well as in operations and targeted activities. Benefits included enhanced clinician engagement in research, practice-based research, and impacts on clinical practice. Transformational learnings concerned the importance of supporting stakeholder engagement, fostering a spirit of inquiry, and fostering leaderful practice. These learnings contributed to three related emergent outcomes reflecting "way stations" on the journey to enhanced evidence-informed decision making and clinical excellence: enhancements in authentic partnerships, greater innovation capacity, and greater understanding and actualization of leadership values. Practical implications Practical information is provided for other organizations interested in understanding how this initiative evolved, its tangible value, and its wider benefits for organizational collaboration, innovation, and leadership values. Challenges encountered and main messages for other organizations are also considered. Originality/value A strategy map is used to present the structures, processes, and outcomes arising from the initiative, with the goal of informing the operations of other organizations desiring to be learning organizations.

Informing evidence-based clinical practice guidelines for children with cerebral palsy at risk of osteoporosis: a systematic review.

AIM: The aim of this systematic review was to inform evidence-based clinical practice guidelines for children with cerebral palsy (CP) and low bone mineral density (BMD). METHOD: A computer-assisted literature search was focused on low BMD in children with CP, and was limited to the following interventions: weight-bearing activities, bisphosphonate use, and vitamin D or calcium supplementation. Articles were classified according to American Academy of Neurology guidelines and recommendation classifications were given based on the evidence for the intervention increasing BMD and decreasing fragility fractures. Studies were included if they were English-language full-text studies, focused on children with CP, and included at least 10 participants receiving the studied interventions. RESULTS: Twenty-one articles underwent full-text review and data abstraction, including seven studies of weight-bearing activities, five studies of vitamin D or calcium supplementation, and nine studies of bisphosphonates administration. Overall, the evidence that bisphosphonates administration increases BMD was assessed as level B (probable) while the evidence that vitamin D or calcium supplementation does so was assessed as level C (possible); there was insufficient evidence to suggest that weight-bearing activities are an effective intervention to improve BMD. The evidence that bisphosphonates help to prevent fragility fractures was assessed as level C (possible); there was inadequate evidence to support the use of weight-bearing activities or vitamin D or calcium supplementation to decrease fragility fractures. INTERPRETATION: Evidence-based clinical practice guidelines were created outlining the suggested role of weight-bearing activities, vitamin D and calcium supplementation, and bisphosphonate use for children with CP with low BMD at risk of fragility fractures.

Impact of modafinil on spasticity reduction and quality of life in children with CP.

This randomized double blind AB/BA cross-over trial evaluates the effect of oral modafinil versus placebo on spasticity, function, and quality of life in children with cerebral palsy (CP). Outcomes were measured at the start and end of both 8-week treatment periods (modafinil and placebo). The order of the treatment periods was randomly assigned. There was a 4-week wash-out period between treatments. Primary outcomes include the Modified Ashworth Score (MAS), and the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), a disorder-specific quality of life measure. Ten children were randomized and eight children completed the study. The mean age of participants was 11 years 5 months (SD 1 y 5 mo, range 8 y 8 mo-12 y 11 mo). Five of the participants were male and three female. Seven children had a diagnosis of spastic quadriplegic CP and one child had spastic diplegia with overflow tone to the upper extremities. The Gross Motor Function Classification System ranged from Level III to V with one child at Level III, six children at Level IV, and one at Level V. The CPCHILD pre- to post-total scores showed a slight improvement in quality of life during the placebo period and a slight deterioration in the modafinil period (overall mean change of 7.1, SD 7.6). A t-test between post differences was statistically significant (t=2.65, p=0.03) in favor of the placebo period. The MAS for elbow flexors, ankle flexors, and hip adductors did not show any significant reduction post-modafinil or post-placebo (p values ranged from 0.41-0.79). This study did not find evidence that modafinil reduces spasticity or has a positive impact on quality of life in children with spastic CP.