Health-Related Quality of Life after Community-Acquired Septic Shock in Children with Preexisting Severe Developmental Disabilities

Kathleen L. Meert; Ron W. Reeder; Aline B. Maddux; Russell Banks; Robert A. Berg; Christopher J. Newth; Mark W. Hall; Michael Quasney; Joseph A. Carcillo; Patrick S. McQuillen; Peter M. Mourani; Ranjit S. Chima; Richard Holubkov; Samuel Sorenson; Julie McGalliard; J. Michael Dean; Jerry J. Zimmerman; Sabrina Heidemann; Ann Pawluszka; Melanie Lulic; Athena Zuppa; Carolann Twelves; Mary Ann Diliberto; Murray Pollack; David Wessel; John Berger; Elyse Tomanio; Diane Hession; Ashley Wolfe; Todd Carpenter; Diane Ladell; Yamila Sierra; Alle Rutebemberwa; Ruth Grosskreuz; Andrew Yates; Lisa Steele; Maggie Flowers; Josey Hensley; Anil Sapru; Rick Harrison; Neda Ashtari; Anna Ratiu; Joe Carcillo; Michael Bell; Leighann Koch; Alan Abraham; Anne McKenzie; Yensy Zetino; Jeni Kwok; Amy Yamakawa; Thomas Shanley; C. J. Jayachandran; Hector Wong; Kelli Krallman; Erin Stoneman; Laura Benken; Toni Yunger; Catherine Chen; Erin Sullivan; Courtney Merritt; Deana Rich; Wren Haaland; Kathryn B. Whitlock; Derek Salud; Whit Coleman; Andrew Nicklawsky; Angie Webster; Jeri Burr; Stephanie Bisping; Teresa Liu; Emily Stock; Kristi Flick; James Varni

doi:10.1097/PCC.0000000000002606

Health-Related Quality of Life after Community-Acquired Septic Shock in Children with Preexisting Severe Developmental Disabilities

Kathleen L. Meert, Ron W. Reeder, Aline B. Maddux, Russell Banks, Robert A. Berg, Christopher J. Newth, Mark W. Hall, Michael Quasney, Joseph A. Carcillo, Patrick S. McQuillen, Peter M. Mourani, Ranjit S. Chima, Richard Holubkov, Samuel Sorenson, Julie McGalliard, J. Michael Dean, Jerry J. Zimmerman, Sabrina Heidemann, Ann Pawluszka, Melanie LulicAthena Zuppa, Carolann Twelves, Mary Ann Diliberto, Murray Pollack, David Wessel, John Berger, Elyse Tomanio, Diane Hession, Ashley Wolfe, Todd Carpenter, Diane Ladell, Yamila Sierra, Alle Rutebemberwa, Ruth Grosskreuz, Andrew Yates, Lisa Steele, Maggie Flowers, Josey Hensley, Anil Sapru, Rick Harrison, Neda Ashtari, Anna Ratiu, Joe Carcillo, Michael Bell, Leighann Koch, Alan Abraham, Anne McKenzie, Yensy Zetino, Jeni Kwok, Amy Yamakawa, Thomas Shanley, C. J. Jayachandran, Hector Wong, Kelli Krallman, Erin Stoneman, Laura Benken, Toni Yunger, Catherine Chen, Erin Sullivan, Courtney Merritt, Deana Rich, Wren Haaland, Kathryn B. Whitlock, Derek Salud, Whit Coleman, Andrew Nicklawsky, Angie Webster, Jeri Burr, Stephanie Bisping, Teresa Liu, Emily Stock, Kristi Flick, James Varni

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Abstract

OBJECTIVES: To serially evaluate health-related quality of life during the first year after community-acquired septic shock in children with preexisting severe developmental disabilities and explore factors associated with health-related quality of life changes in these children. DESIGN: Secondary analysis of the Life after Pediatric Sepsis Evaluation investigation. SETTING: Twelve academic PICU in the United States. PATIENTS: Children greater than or equal to 1 month and less than 18 years old identified by their family caregiver (e.g., parent/guardian) as having severe developmental disability prior to septic shock. INTERVENTIONS: Family caregivers completed the Stein-Jessop Functional Status II-R Short Form as a measure of their child's health-related quality of life at baseline (reflecting preadmission status), day 7, and months 1, 3, 6, and 12 following PICU admission. Stein-Jessop Functional Status II-R Short Form scores were linearly transformed to a 0-100 scale, with higher scores indicating better health-related quality of life. MEASUREMENTS AND MAIN RESULTS: Of 392 Life after Pediatric Sepsis Evaluation participants, 137 were identified by their caregiver as having a severe developmental disability. Sixteen children (11.6%) with severe disability died during the 12 months following septic shock. Among 121 survivors, Stein-Jessop Functional Status II-R Short Form scores declined from preadmission baseline to day 7 (70.7 ± 16.1 vs 55.6 ± 19.2; p < 0.001). Stein-Jessop Functional Status II-R Short Form scores remained below baseline through month 12 (59.1 ± 21.0, p < 0.001 vs baseline). After adjusting for baseline Stein-Jessop Functional Status II-R Short Form, the caregiver being a single parent/guardian was associated with lower month 3 Stein-Jessop Functional Status II-R Short Form scores (p = 0.041). No other baseline child or caregiver characteristic, or critical illness-related factors were significantly associated with month 3 Stein-Jessop Functional Status II-R Short Form scores. CONCLUSIONS: Health-related quality of life among children with severe developmental disability remains, on average, below baseline during the first year following community-acquired septic shock. Children with severe disability and septic shock that are in single parent families are at increased risk. Clinical awareness of the potential for decline in health-related quality of life among disabled children is essential to prevent this adverse outcome from being missed.

Original language	English
Pages (from-to)	E302-E313
Journal	Pediatric Critical Care Medicine
DOIs	https://doi.org/10.1097/PCC.0000000000002606
State	Accepted/In press - 2021

Keywords

child
developmental disability
health-related quality of life
infant
pediatric
sepsis
septic shock

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10.1097/PCC.0000000000002606

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Meert, K. L., Reeder, R. W., Maddux, A. B., Banks, R., Berg, R. A., Newth, C. J., Hall, M. W., Quasney, M., Carcillo, J. A., McQuillen, P. S., Mourani, P. M., Chima, R. S., Holubkov, R., Sorenson, S., McGalliard, J., Dean, J. M., Zimmerman, J. J., Heidemann, S., Pawluszka, A., ... Varni, J. (Accepted/In press). Health-Related Quality of Life after Community-Acquired Septic Shock in Children with Preexisting Severe Developmental Disabilities. Pediatric Critical Care Medicine, E302-E313. https://doi.org/10.1097/PCC.0000000000002606

@article{74304e96a38b4636875ae9fab084f2b6,

title = "Health-Related Quality of Life after Community-Acquired Septic Shock in Children with Preexisting Severe Developmental Disabilities",

abstract = "OBJECTIVES: To serially evaluate health-related quality of life during the first year after community-acquired septic shock in children with preexisting severe developmental disabilities and explore factors associated with health-related quality of life changes in these children. DESIGN: Secondary analysis of the Life after Pediatric Sepsis Evaluation investigation. SETTING: Twelve academic PICU in the United States. PATIENTS: Children greater than or equal to 1 month and less than 18 years old identified by their family caregiver (e.g., parent/guardian) as having severe developmental disability prior to septic shock. INTERVENTIONS: Family caregivers completed the Stein-Jessop Functional Status II-R Short Form as a measure of their child's health-related quality of life at baseline (reflecting preadmission status), day 7, and months 1, 3, 6, and 12 following PICU admission. Stein-Jessop Functional Status II-R Short Form scores were linearly transformed to a 0-100 scale, with higher scores indicating better health-related quality of life. MEASUREMENTS AND MAIN RESULTS: Of 392 Life after Pediatric Sepsis Evaluation participants, 137 were identified by their caregiver as having a severe developmental disability. Sixteen children (11.6%) with severe disability died during the 12 months following septic shock. Among 121 survivors, Stein-Jessop Functional Status II-R Short Form scores declined from preadmission baseline to day 7 (70.7 ± 16.1 vs 55.6 ± 19.2; p < 0.001). Stein-Jessop Functional Status II-R Short Form scores remained below baseline through month 12 (59.1 ± 21.0, p < 0.001 vs baseline). After adjusting for baseline Stein-Jessop Functional Status II-R Short Form, the caregiver being a single parent/guardian was associated with lower month 3 Stein-Jessop Functional Status II-R Short Form scores (p = 0.041). No other baseline child or caregiver characteristic, or critical illness-related factors were significantly associated with month 3 Stein-Jessop Functional Status II-R Short Form scores. CONCLUSIONS: Health-related quality of life among children with severe developmental disability remains, on average, below baseline during the first year following community-acquired septic shock. Children with severe disability and septic shock that are in single parent families are at increased risk. Clinical awareness of the potential for decline in health-related quality of life among disabled children is essential to prevent this adverse outcome from being missed.",

keywords = "child, developmental disability, health-related quality of life, infant, pediatric, sepsis, septic shock",

author = "Meert, {Kathleen L.} and Reeder, {Ron W.} and Maddux, {Aline B.} and Russell Banks and Berg, {Robert A.} and Newth, {Christopher J.} and Hall, {Mark W.} and Michael Quasney and Carcillo, {Joseph A.} and McQuillen, {Patrick S.} and Mourani, {Peter M.} and Chima, {Ranjit S.} and Richard Holubkov and Samuel Sorenson and Julie McGalliard and Dean, {J. Michael} and Zimmerman, {Jerry J.} and Sabrina Heidemann and Ann Pawluszka and Melanie Lulic and Athena Zuppa and Carolann Twelves and Diliberto, {Mary Ann} and Murray Pollack and David Wessel and John Berger and Elyse Tomanio and Diane Hession and Ashley Wolfe and Todd Carpenter and Diane Ladell and Yamila Sierra and Alle Rutebemberwa and Ruth Grosskreuz and Andrew Yates and Lisa Steele and Maggie Flowers and Josey Hensley and Anil Sapru and Rick Harrison and Neda Ashtari and Anna Ratiu and Joe Carcillo and Michael Bell and Leighann Koch and Alan Abraham and Anne McKenzie and Yensy Zetino and Jeni Kwok and Amy Yamakawa and Thomas Shanley and Jayachandran, {C. J.} and Hector Wong and Kelli Krallman and Erin Stoneman and Laura Benken and Toni Yunger and Catherine Chen and Erin Sullivan and Courtney Merritt and Deana Rich and Wren Haaland and Whitlock, {Kathryn B.} and Derek Salud and Whit Coleman and Andrew Nicklawsky and Angie Webster and Jeri Burr and Stephanie Bisping and Teresa Liu and Emily Stock and Kristi Flick and James Varni",

year = "2021",

doi = "10.1097/PCC.0000000000002606",

language = "English",

pages = "E302--E313",

journal = "Pediatric Critical Care Medicine",

issn = "1529-7535",

}

Meert, KL, Reeder, RW, Maddux, AB, Banks, R, Berg, RA, Newth, CJ, Hall, MW, Quasney, M, Carcillo, JA, McQuillen, PS, Mourani, PM, Chima, RS, Holubkov, R, Sorenson, S, McGalliard, J, Dean, JM, Zimmerman, JJ, Heidemann, S, Pawluszka, A, Lulic, M, Zuppa, A, Twelves, C, Diliberto, MA, Pollack, M, Wessel, D, Berger, J, Tomanio, E, Hession, D, Wolfe, A, Carpenter, T, Ladell, D, Sierra, Y, Rutebemberwa, A, Grosskreuz, R, Yates, A, Steele, L, Flowers, M, Hensley, J, Sapru, A, Harrison, R, Ashtari, N, Ratiu, A, Carcillo, J, Bell, M, Koch, L, Abraham, A, McKenzie, A, Zetino, Y, Kwok, J, Yamakawa, A, Shanley, T, Jayachandran, CJ, Wong, H, Krallman, K, Stoneman, E, Benken, L, Yunger, T, Chen, C, Sullivan, E, Merritt, C, Rich, D, Haaland, W, Whitlock, KB, Salud, D, Coleman, W, Nicklawsky, A, Webster, A, Burr, J, Bisping, S, Liu, T, Stock, E, Flick, K & Varni, J 2021, 'Health-Related Quality of Life after Community-Acquired Septic Shock in Children with Preexisting Severe Developmental Disabilities', Pediatric Critical Care Medicine, pp. E302-E313. https://doi.org/10.1097/PCC.0000000000002606

TY - JOUR

T1 - Health-Related Quality of Life after Community-Acquired Septic Shock in Children with Preexisting Severe Developmental Disabilities

AU - Meert, Kathleen L.

AU - Reeder, Ron W.

AU - Maddux, Aline B.

AU - Banks, Russell

AU - Berg, Robert A.

AU - Newth, Christopher J.

AU - Hall, Mark W.

AU - Quasney, Michael

AU - Carcillo, Joseph A.

AU - McQuillen, Patrick S.

AU - Mourani, Peter M.

AU - Chima, Ranjit S.

AU - Holubkov, Richard

AU - Sorenson, Samuel

AU - McGalliard, Julie

AU - Dean, J. Michael

AU - Zimmerman, Jerry J.

AU - Heidemann, Sabrina

AU - Pawluszka, Ann

AU - Lulic, Melanie

AU - Zuppa, Athena

AU - Twelves, Carolann

AU - Diliberto, Mary Ann

AU - Pollack, Murray

AU - Wessel, David

AU - Berger, John

AU - Tomanio, Elyse

AU - Hession, Diane

AU - Wolfe, Ashley

AU - Carpenter, Todd

AU - Ladell, Diane

AU - Sierra, Yamila

AU - Rutebemberwa, Alle

AU - Grosskreuz, Ruth

AU - Yates, Andrew

AU - Steele, Lisa

AU - Flowers, Maggie

AU - Hensley, Josey

AU - Sapru, Anil

AU - Harrison, Rick

AU - Ashtari, Neda

AU - Ratiu, Anna

AU - Carcillo, Joe

AU - Bell, Michael

AU - Koch, Leighann

AU - Abraham, Alan

AU - McKenzie, Anne

AU - Zetino, Yensy

AU - Kwok, Jeni

AU - Yamakawa, Amy

AU - Shanley, Thomas

AU - Jayachandran, C. J.

AU - Wong, Hector

AU - Krallman, Kelli

AU - Stoneman, Erin

AU - Benken, Laura

AU - Yunger, Toni

AU - Chen, Catherine

AU - Sullivan, Erin

AU - Merritt, Courtney

AU - Rich, Deana

AU - Haaland, Wren

AU - Whitlock, Kathryn B.

AU - Salud, Derek

AU - Coleman, Whit

AU - Nicklawsky, Andrew

AU - Webster, Angie

AU - Burr, Jeri

AU - Bisping, Stephanie

AU - Liu, Teresa

AU - Stock, Emily

AU - Flick, Kristi

AU - Varni, James

PY - 2021

Y1 - 2021

N2 - OBJECTIVES: To serially evaluate health-related quality of life during the first year after community-acquired septic shock in children with preexisting severe developmental disabilities and explore factors associated with health-related quality of life changes in these children. DESIGN: Secondary analysis of the Life after Pediatric Sepsis Evaluation investigation. SETTING: Twelve academic PICU in the United States. PATIENTS: Children greater than or equal to 1 month and less than 18 years old identified by their family caregiver (e.g., parent/guardian) as having severe developmental disability prior to septic shock. INTERVENTIONS: Family caregivers completed the Stein-Jessop Functional Status II-R Short Form as a measure of their child's health-related quality of life at baseline (reflecting preadmission status), day 7, and months 1, 3, 6, and 12 following PICU admission. Stein-Jessop Functional Status II-R Short Form scores were linearly transformed to a 0-100 scale, with higher scores indicating better health-related quality of life. MEASUREMENTS AND MAIN RESULTS: Of 392 Life after Pediatric Sepsis Evaluation participants, 137 were identified by their caregiver as having a severe developmental disability. Sixteen children (11.6%) with severe disability died during the 12 months following septic shock. Among 121 survivors, Stein-Jessop Functional Status II-R Short Form scores declined from preadmission baseline to day 7 (70.7 ± 16.1 vs 55.6 ± 19.2; p < 0.001). Stein-Jessop Functional Status II-R Short Form scores remained below baseline through month 12 (59.1 ± 21.0, p < 0.001 vs baseline). After adjusting for baseline Stein-Jessop Functional Status II-R Short Form, the caregiver being a single parent/guardian was associated with lower month 3 Stein-Jessop Functional Status II-R Short Form scores (p = 0.041). No other baseline child or caregiver characteristic, or critical illness-related factors were significantly associated with month 3 Stein-Jessop Functional Status II-R Short Form scores. CONCLUSIONS: Health-related quality of life among children with severe developmental disability remains, on average, below baseline during the first year following community-acquired septic shock. Children with severe disability and septic shock that are in single parent families are at increased risk. Clinical awareness of the potential for decline in health-related quality of life among disabled children is essential to prevent this adverse outcome from being missed.

AB - OBJECTIVES: To serially evaluate health-related quality of life during the first year after community-acquired septic shock in children with preexisting severe developmental disabilities and explore factors associated with health-related quality of life changes in these children. DESIGN: Secondary analysis of the Life after Pediatric Sepsis Evaluation investigation. SETTING: Twelve academic PICU in the United States. PATIENTS: Children greater than or equal to 1 month and less than 18 years old identified by their family caregiver (e.g., parent/guardian) as having severe developmental disability prior to septic shock. INTERVENTIONS: Family caregivers completed the Stein-Jessop Functional Status II-R Short Form as a measure of their child's health-related quality of life at baseline (reflecting preadmission status), day 7, and months 1, 3, 6, and 12 following PICU admission. Stein-Jessop Functional Status II-R Short Form scores were linearly transformed to a 0-100 scale, with higher scores indicating better health-related quality of life. MEASUREMENTS AND MAIN RESULTS: Of 392 Life after Pediatric Sepsis Evaluation participants, 137 were identified by their caregiver as having a severe developmental disability. Sixteen children (11.6%) with severe disability died during the 12 months following septic shock. Among 121 survivors, Stein-Jessop Functional Status II-R Short Form scores declined from preadmission baseline to day 7 (70.7 ± 16.1 vs 55.6 ± 19.2; p < 0.001). Stein-Jessop Functional Status II-R Short Form scores remained below baseline through month 12 (59.1 ± 21.0, p < 0.001 vs baseline). After adjusting for baseline Stein-Jessop Functional Status II-R Short Form, the caregiver being a single parent/guardian was associated with lower month 3 Stein-Jessop Functional Status II-R Short Form scores (p = 0.041). No other baseline child or caregiver characteristic, or critical illness-related factors were significantly associated with month 3 Stein-Jessop Functional Status II-R Short Form scores. CONCLUSIONS: Health-related quality of life among children with severe developmental disability remains, on average, below baseline during the first year following community-acquired septic shock. Children with severe disability and septic shock that are in single parent families are at increased risk. Clinical awareness of the potential for decline in health-related quality of life among disabled children is essential to prevent this adverse outcome from being missed.

KW - child

KW - developmental disability

KW - health-related quality of life

KW - infant

KW - pediatric

KW - sepsis

KW - septic shock

UR - http://www.scopus.com/inward/record.url?scp=85106044622&partnerID=8YFLogxK

U2 - 10.1097/PCC.0000000000002606

DO - 10.1097/PCC.0000000000002606

M3 - Article

C2 - 33156209

AN - SCOPUS:85106044622

SN - 1529-7535

SP - E302-E313

JO - Pediatric Critical Care Medicine

JF - Pediatric Critical Care Medicine

ER -

Health-Related Quality of Life after Community-Acquired Septic Shock in Children with Preexisting Severe Developmental Disabilities

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