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Overnight respiratory support for prevention of morbidity in Sickle Cell Disease (POMS 2a) - parent and child preferences

Overnight respiratory support for prevention of morbidity in Sickle Cell Disease (POMS 2a) - parent and child preferences
Overnight respiratory support for prevention of morbidity in Sickle Cell Disease (POMS 2a) - parent and child preferences
PURPOSE: Obstructive sleep apnea and nocturnal hypoxemia are common in children with sickle cell disease (SCD) and some degree of improvement has been reported following adenotonsillectomy(Finch et al., 2013). NOT and continuous positive airways pressure (CPAP) have shown some benefits in children and adolescent patients(Hargrave, 2003). While NOT and CPAP are offered to children with or without co-morbidities, there are concerns about acceptability and safety(Makani et al., 2009). The data on patient preference is limited in childhood and more so for those with SCD. To achieve optimal adherence to therapy in SCD, Auto-Adjusting Positive Airways Pressure (APAP), where airway pressure is delivered only when obstruction occurs, may be a more acceptable option than CPAP(Marshall et al., 2009). Therefore prior to designing Phase II and III trials that are adequately powered, this study sought to: i) identify parent/caregiver and child treatment preference; ii) assess whether parent/caregiver or child should manage the electronic pain diary; iii) assess any treatment effect on Health Related Quality of Life (HRQOL) in children; and iv) explore the relationship of treatment adherence to: a) experience of pain, and b) overall clinical benefit from the intervention.
0006-4971
4457
Inusa, Baba
830cfc6c-2482-4986-b2d3-9edd5cf2d9f5
Wakeford, SallyAnn
dca78c32-7bed-408f-aa12-42eefaeafaea
Kirkham, Fenella
1dfbc0d5-aebe-4439-9fb2-dac6503bcd58
Inusa, Baba
830cfc6c-2482-4986-b2d3-9edd5cf2d9f5
Wakeford, SallyAnn
dca78c32-7bed-408f-aa12-42eefaeafaea
Kirkham, Fenella
1dfbc0d5-aebe-4439-9fb2-dac6503bcd58

Inusa, Baba, Wakeford, SallyAnn and Kirkham, Fenella (2015) Overnight respiratory support for prevention of morbidity in Sickle Cell Disease (POMS 2a) - parent and child preferences. Blood, 126 (23), 4457.

Record type: Article

Abstract

PURPOSE: Obstructive sleep apnea and nocturnal hypoxemia are common in children with sickle cell disease (SCD) and some degree of improvement has been reported following adenotonsillectomy(Finch et al., 2013). NOT and continuous positive airways pressure (CPAP) have shown some benefits in children and adolescent patients(Hargrave, 2003). While NOT and CPAP are offered to children with or without co-morbidities, there are concerns about acceptability and safety(Makani et al., 2009). The data on patient preference is limited in childhood and more so for those with SCD. To achieve optimal adherence to therapy in SCD, Auto-Adjusting Positive Airways Pressure (APAP), where airway pressure is delivered only when obstruction occurs, may be a more acceptable option than CPAP(Marshall et al., 2009). Therefore prior to designing Phase II and III trials that are adequately powered, this study sought to: i) identify parent/caregiver and child treatment preference; ii) assess whether parent/caregiver or child should manage the electronic pain diary; iii) assess any treatment effect on Health Related Quality of Life (HRQOL) in children; and iv) explore the relationship of treatment adherence to: a) experience of pain, and b) overall clinical benefit from the intervention.

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More information

Published date: 3 December 2015

Identifiers

Local EPrints ID: 424297
URI: http://eprints.soton.ac.uk/id/eprint/424297
ISSN: 0006-4971
PURE UUID: 1bad859c-9edf-4203-b4f9-6b9f1b129eea
ORCID for Fenella Kirkham: ORCID iD orcid.org/0000-0002-2443-7958

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Date deposited: 05 Oct 2018 11:35
Last modified: 16 Mar 2024 03:22

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Contributors

Author: Baba Inusa
Author: SallyAnn Wakeford
Author: Fenella Kirkham ORCID iD

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