Setting a patient‐centered research agenda for cerebral palsy: a participatory action research initiative

Gross, Paul; Bailes, Amy F; Horn, Susan D.; Hurvitz, Edward A.; Kean, Jacob; Shusterman, Michele

doi:10.1111/dmcn.13984

Cited by 73 publications

(83 citation statements)

References 21 publications

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“…Moreover, many of the topics and questions of great interest to the participants in this project (e.g., interpersonal and structural healthcare inequities) do not receive the same level of investment as those topics of interest to researchers and institutions (e.g., placental biology). This has been the case with other conditions (e.g., cerebral palsy disabilities) where priorities differed in emphasis between those affected by the condition and those who study the condition [16]. By incorporating the expertise of the people most affected by preterm birth at all levels of the research enterprise and centering their priorities in development of a research agenda, we believe that the research produced will be more effective and more likely to lead to greater health equity.…”

Section: Discussionmentioning

confidence: 99%

“…• Stress and the Benefits of Social Support [2] • Education and Empowerment of Birthing Women [7] • Support for Fathers During and After Pregnancy [16] • The Impact of Men on Pregnancy Outcomes [17] • Role of Family and Friends in Caring for Families [19] Why aren't there more widely available education materials or videos, etc. to help women recognize their own stress?…”

Section: Understanding Stress and Interventions To Prevent Or Reduce mentioning

confidence: 99%

“…Methods for PPI in research priority setting are relatively nascent. Typical methods of research funders to engage PPI in research strategy include gathering input from representatives from patient advocacy organizations, or inviting patients or patient representatives to stakeholder consultation meetings, sometimes together with professional and industry stakeholders, or conducting surveys [16][17][18][19][20]. One of the most welldeveloped and widely used methods for PPI in research is the James Lind Alliance (JLA) Priority Setting Partnerships [6] that brings together patients, their caregivers and clinician groups to identify treatment uncertainties (i.e., questions about treatments which cannot be answered by existing research).…”

Section: Introductionmentioning

confidence: 99%

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Research priorities of women at risk for preterm birth: findings and a call to action

Franck

McLemore

Williams

et al. 2020

BMC Pregnancy Childbirth

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Background: Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research. Methods: We used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve 'top-priority' research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences.Results: Fifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions.Conclusions: These findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities.

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Section: Discussionmentioning

confidence: 99%

Section: Understanding Stress and Interventions To Prevent Or Reduce mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Research priorities of women at risk for preterm birth: findings and a call to action

Franck

McLemore

Williams

et al. 2020

BMC Pregnancy Childbirth

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“…While SDR provided a platform to evaluate the impacts of spasticity, other strategies will be necessary to evaluate the relative importance of other factors and identify optimal strategies for reducing energy consumption for children with CP. This is especially critical, as physical fatigue is very prevalent among individuals with CP throughout their lifespan, and hinders participation and quality of life (Gross et al, 2018;Jahnsen et al, 2003).…”

Section: Discussionmentioning

confidence: 99%

Spasticity reduction in children with cerebral palsy is not associated with reduced energy consumption during walking

Steele

et al. 2019

Preprint

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Word Count: 246 (250) Main Text Word Count: 2311 (4000) Declarations of interest: none Highlights • Energy consumption is not reduced after rhizotomy compared to matched peers • Spasticity has minimal contribution to elevated energy during walking • Matched control groups are critical in cerebral palsy research AbstractBackground: The average energy consumption during walking of children with cerebral palsy (CP) is over two times of that of typically developing (TD) children and fatigue is one of the top complaints of children with CP and their families. Spasticity has been theorized to contribute to increased energy consumption during walking in CP, but its role remains unclear.Methods: We retrospectively compared the energy consumption of walking in children with diplegic CP before and after selective dorsal rhizotomy (SDR), a surgery that reduces spasticity. A control group of participants with CP who also underwent gait analysis but did not undergo SDR was matched to the SDR group by pre-surgery age, spasticity, and energy consumption. Energy consumption and spasticity were compared at baseline and follow-up for both groups.Findings: As expected, the SDR group has a significantly greater decrease (-44%) in spasticity compared to matched peers with CP who did not undergo SDR (-16%, P<0.001). While both groups had a reduction in energy consumption between visits (12 % SDR and 14% no-SDR), there was no difference in the change in energy consumption between groups (P=0.4).Interpretation: Reducing spasticity did not contribute to greater reductions in energy consumption, suggesting that spasticity has minimal impact on elevated energy consumption during walking for children with CP. Energy consumption and spasticity decrease with age among children with CP. Identifying matched control groups of peers with CP is critical for research involving children with CP to account for changes due to development.

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“…Participation is one of the most important outcomes for children with disabilities and chronic conditions . Setting participation as a research outcome ensures that research has a direct, positive impact and helps to keep research work aligned with the actual and changing needs of disabled individuals throughout their lives . Keeping participation as a target also has other potential beneficial effects: (1) makes research accessible and more relevant to families and policy makers; (2) promotes the development of user‐based approaches; and (3) increases the critical mass of people that can be involved in disability research since participation is common to all disabled individuals.…”

mentioning

confidence: 99%

The need for innovation in participation in childhood disability

Brochard¹,

Newman²

2019

Develop Med Child Neuro

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Setting a patient‐centered research agenda for cerebral palsy: a participatory action research initiative

Cited by 73 publications

References 21 publications

Research priorities of women at risk for preterm birth: findings and a call to action

Research priorities of women at risk for preterm birth: findings and a call to action

Spasticity reduction in children with cerebral palsy is not associated with reduced energy consumption during walking

The need for innovation in participation in childhood disability

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