Core outcome set for children with neurological impairment and tube feeding

Joachim, Kariym C.; Farid‐Kapadia, Mufiza; Butcher, Nancy J.; Chee-A-Tow, Alyssandra; Monsour, Andrea; Cohen, Eyal; Mahant, Sanjay; Guttmann, Astrid; Offringa, Martin; Nelson, Katherine; Maguire, Jonathon L.; Hogan, Annique; Major‐Cook, Nathalie; Oppedisano, Silvana; Patel, Hema; Soscia, Joanna; Stack, Noelle J.; Biervliet, Stéphanie Van

doi:10.1111/dmcn.14326

Cited by 14 publications

(18 citation statements)

References 30 publications

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“…The COS systematic review 18 did not identify sleep as an outcome and it does not appear in the COS. 12 However, in our study, it emerged as highly relevant to children and parents and we would recommend its inclusion. Regarding the COS's physical health status outcome domain, energy levels and resilience to/recovery from infections were widely cited as relevant indicators.…”

Section: Life Impact Domainsmentioning

confidence: 85%

Outcomes for gastrostomy‐fed children and their parents: qualitative findings from the ‘Your Tube’ study

Maddison

Taylor

O'Neill

et al. 2021

Develop Med Child Neuro

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Aim To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food). Method Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups. Children (2–18y) represented included those on formula (n=11), blended‐food (n=7), and mixed (n=2) diets. All had been tube‐fed for at least 6 months. Neurological, genetic, and metabolic conditions were represented. Results Participants identified a range of children’s outcomes relevant to a gastrostomy, including physical health, gastrointestinal symptoms, sleep, and time spent feeding. The children described experiences of exclusion caused by being tube‐fed. Time, sleep, and emotional health were regarded as most salient to understanding parents’ gastrostomy outcomes. Participants believed type of diet would most likely effect gastrointestinal symptoms, time spent feeding, sleep, and physical health. Interpretation Findings indicate a number of refinements to, and allow further specification of, the current ‘initial’ core outcome set for tube‐fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed. Sleep is a key outcome for children and parents. Gastrointestinal symptoms and physical health were regarded as outcomes most likely to be affected by type of diet. Well‐being and participation were identified as key distal outcomes. Gastrostomies are complex interventions. Further specification of the core outcome set is possible.

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Section: Life Impact Domainsmentioning

confidence: 85%

Outcomes for gastrostomy‐fed children and their parents: qualitative findings from the ‘Your Tube’ study

Maddison

Taylor

O'Neill

et al. 2021

Develop Med Child Neuro

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“…acute severe asthma 16 ); and specific population‐based interventions (eg. neurological impairment and tube feeding 17 ). The importance of stakeholder engagement, that includes parents and patients, is widely acknowledged.…”

Section: Discussionmentioning

confidence: 99%

A systematic review of outcomes reported in pediatric perioperative research: A report from the Pediatric Perioperative Outcomes Group

Muhly

Taylor

Razavi

et al. 2020

Pediatric Anesthesia

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The Pediatric Perioperative Outcomes Group (PPOG) is an international collaborative of clinical investigators and clinicians within the subspecialty of pediatric anesthesiology and perioperative care which aims to use COMET (Core Outcomes Measures in Effectiveness Trials) methodology to develop core outcome sets for infants, children, and young people that are tailored to the priorities of the pediatric surgical population. Focusing on four age-dependent patient subpopulations determined a priori for core outcome set development: (a) neonates and former preterm infants (up to 60 weeks postmenstrual age); (b) infants (>60 weeks postmenstrual age-<1 year); (c) toddlers and school age children (>1-<13 years); and (d) adolescents (>13-<18 years), we conducted a systematic review of outcomes reported in perioperative studies that include participants within age-dependent pediatric subpopulations. Our review of pediatric perioperative controlled trials published from 2008 to 2018 identified 724 articles reporting 3192 outcome measures. The proportion of published trials and the most frequently reported outcomes varied across predetermined age-groups. Outcomes related to patient comfort, particularly pain and analgesic requirement, were the most frequent domain for infants, children, and adolescents. Clinical indicators, particularly cardiorespiratory or medication-related adverse events, were the most common outcomes for neonates and infants <60 weeks and were the second most frequent domain at all other ages. Neonates and infants <60 weeks of age were significantly under-represented in perioperative trials. Patient-centered outcomes, healthcare utilization, and bleeding/transfusion-related outcomes were less often reported. In most studies, outcomes were measured in the immediate perioperative period, with the duration often restricted to the postanesthesia care unit or the first 24 postoperative hours. The outcomes identified with this systematic review will be combined with patient-centered outcomes identified through a subsequent stakeholder engagement study to arrive at a core outcome set for each age-specific group.

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“…As would be expected, given the breadth of the clinical population, the funded projects also reflect a breadth of research questions, disciplines, and methods. Table 1 highlights a selection of projects funded through the NSCCI grants competition whose results have subsequently been published in high-quality, peer-reviewed clinical journals [7][8][9][10][11][12][13][14][15][16][17]. Orkin [10] Toward an understanding of advance care planning in children with medical complexity.…”

Section: Impact Of the Nscci On Researchmentioning

confidence: 99%

“…Pediatrics, 2020 (IF 7.124, 18 citations) Joachim [11] Core outcome set for children with neurological impairment and tube feeding.…”

Section: Qualitative Interview Of Parents and Hcpsmentioning

confidence: 99%

From Philanthropy to Clinical Care through Research: Impact of the Norman Saunders Complex Care Initiative

et al. 2022

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Norman Saunders was a respected academic community paediatrician who was passionate about the care of children with medical complexity. Following his untimely death at age 60, patients, friends, and colleagues raised funds to create the Norman Saunders Complex Care Initiative (NSCCI). Dr. Saunders’s vision was a comprehensive, coordinated, and integrated clinical program for children with medical complexity that was informed by research evidence. The objective of this review was to evaluate the impact of targeted philanthropic funding on research, clinical care, and policy. Since 2006, NSCCI funds have been used to support interdisciplinary and innovative research. Funded projects have reflected a breadth of research questions (clinical care, training, health system delivery, social determinants), disciplines, and methods, and the research results have informed and helped build an internationally renowned clinical program in complex care. Philanthropic funding was the foundation for the NSCCI, which over the last 15 years has built research and clinical capacity, catalysed clinical and research networks, helped train paediatric residents, influenced policy, and improved the health and well-being of children with medical complexity and their families across Canada, and beyond.

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Core outcome set for children with neurological impairment and tube feeding

Cited by 14 publications

References 30 publications

Outcomes for gastrostomy‐fed children and their parents: qualitative findings from the ‘Your Tube’ study

Outcomes for gastrostomy‐fed children and their parents: qualitative findings from the ‘Your Tube’ study

A systematic review of outcomes reported in pediatric perioperative research: A report from the Pediatric Perioperative Outcomes Group

From Philanthropy to Clinical Care through Research: Impact of the Norman Saunders Complex Care Initiative

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