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1. Evaluating a community respiratory physiotherapy service for children with neurodisability.

Author

Smith, Samantha, Flanigan, Moira, Haynes, Sarah, Michael, Anastasia, and Wolff, Toni

Subjects
Humans, Respiratory Tract Infections, Hospitalization, Quality of Life, Adolescent, Child, Cost-Benefit Analysis, Physical Therapy Modalities, audit and feedback, cost-effectiveness, healthcare quality improvement, paediatrics, Clinical Research, Prevention, Pediatric, Lung, Good Health and Well Being
Abstract

Children with neurodisability are at an increased risk of respiratory problems and complications, which often result in prolonged, frequent hospital admissions and are the biggest cause of mortality in this client group. The Children's Community Respiratory Physiotherapy Service (CCRPS) was established in 2010 to support children with severe neurodisabilities at home during acute chest infections and to prevent emergency department attendances and hospital admissions. This service evaluation looked at patient/parent satisfaction and prevented admissions to ensure clinical and cost-effectiveness, despite the rising demand for the service. Over a 3-month period, patients and parents/carers on the CCRPS caseload were given a Picker feedback survey following 100 emergency visits from the team. The number of prevented hospital admissions for respiratory tract infection over 12 months (April 2019-March 2020) was identified from existing CCRPS data and hospital admissions costs saved were estimated. The Picker survey responses were extremely positive with all respondents reporting that they felt well looked after and that the main reason for the emergency visit was dealt with well. Based on key indicators, the CCRPS prevented 182 hospital admissions for respiratory tract infection in 2019/2020, equating to 1638 bed days and estimated cost savings ranging between £751 728 and £1 009 986. The Picker survey response demonstrates the positive impact that the CCRPS has on both quality of life and experience for patients and families. The CCRPS rapid response service prevents hospital admissions for respiratory tract infections in children and young people with severe neurodisability and the cost savings from admissions prevented allows the service to more than pay for itself.

Published
2022

2. Chameleon project: a children's end-of-life care quality improvement project.

Author

Wolff, Toni, Dorsett, Caroline, Connolly, Alexander, Kelly, Nicola, Turnbull, Jennifer, Deorukhkar, Anjum, Clements, Helena, Griffin, Hayley, Chhaochharia, Anjana, Haynes, Sarah, Webb, Kerry, and Manning, Joseph C

Subjects
Humans, Hospitalization, Terminal Care, Hospice Care, Child, State Medicine, Quality Improvement, length of stay, paediatrics, palliative Care, Pediatric, Clinical Research, Good Health and Well Being
Abstract

In response to there being no specialist paediatric palliative care (PPC) team in a region of England, we undertook a 12-month quality improvement project (funded by National Health Service England's Marginal Rate Emergency Threshold and Readmission fund) to improve children's end-of-life care.Improvements were implemented during two plan-do-study-act (PDSA) cycles and included specialist experts, clinical champions, focused education and training, and tools and materials to support identification, care planning and communication. A lead paediatrician with expertise in PPC (10 hours/week) led the project, supported by a PPC nurse (3 days/week) and a network administrator (2 days/week).Children who died an expected death were identified from the child death review teams. Numbers of non-elective hospital admissions, bed days, and costs were identified.Twenty-nine children died an expected death during the 12 months of the project and coincidentally 29 children died an expected death during the previous 12 months. The median number of non-elective admissions in the last 12 months of life was reduced from two per child to one. There was a reduction in specialist hospital (14%) and district general hospital (38%) bed days. The percentage of children who died an expected death who had anticipatory care plans rose from 50% to 72%.The results indicate that a network of clinicians with expertise in PPC working together across a region can improve personalised care planning and reduce admissions and bed days for children in their last year-of-life with reduced bed utilisation costs.

Published
2021

5. Progressive deafness–dystonia due to SERAC1 mutations: A study of 67 cases

Author

Maas, Roeltje R., Iwanicka‐Pronicka, Katarzyna, Kalkan Ucar, Sema, Alhaddad, Bader, AlSayed, Moeenaldeen, Al‐Owain, Mohammed A., Al‐Zaidan, Hamad I., Balasubramaniam, Shanti, Barić, Ivo, Bubshait, Dalal K., Burlina, Alberto, Christodoulou, John, Chung, Wendy K., Colombo, Roberto, Darin, Niklas, Freisinger, Peter, Garcia Silva, Maria Teresa, Grunewald, Stephanie, Haack, Tobias B., van Hasselt, Peter M., Hikmat, Omar, Hörster, Friederike, Isohanni, Pirjo, Ramzan, Khushnooda, Kovacs‐Nagy, Reka, Krumina, Zita, Martin‐Hernandez, Elena, Mayr, Johannes A., McClean, Patricia, De Meirleir, Linda, Naess, Karin, Ngu, Lock H., Pajdowska, Magdalena, Rahman, Shamima, Riordan, Gillian, Riley, Lisa, Roeben, Benjamin, Rutsch, Frank, Santer, Rene, Schiff, Manuel, Seders, Martine, Sequeira, Silvia, Sperl, Wolfgang, Staufner, Christian, Synofzik, Matthis, Taylor, Robert W., Trubicka, Joanna, Tsiakas, Konstantinos, Unal, Ozlem, Wassmer, Evangeline, Wedatilake, Yehani, Wolff, Toni, Prokisch, Holger, Morava, Eva, Pronicka, Ewa, Wevers, Ron A., de Brouwer, Arjan P., and Wortmann, Saskia B.

Published
2017
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11. Progressive deafness-dystonia due to SERAC1 mutations : A study of 67 cases

Author

Maas, Roeltje R, Iwanicka-Pronicka, Katarzyna, Kalkan-Ucar, Sema, Alhaddad, Bader, AlSayed, Moeenaldeen, Al-Owain, Mohammed, Al-Zaidan, Hamad I, Balasubramaniam, Shanti, Barić, Ivo, Bubshait, Dalal K, Burlina, Alberto, Christodoulou, John, Chung, Wendy K., Colombo, Roberto, Darin, Niklas, Freisinger, Peter, Garcia Silva, Maria Teresa, Grunewald, Stephanie, Haack, Tobias B., van Hasselt, Peter M, Hikmat, Omar, Hörster, Friederike, Isohanni, Pirjo, Ramzan, Khushnooda, Kovacs-Nagy, Reka, Krumina, Zita, Martin-Hernandez, Elena, Mayr, Johannes A, McClean, Patricia, Meirleir, Linda De, Naess, Karin, Ngu, Lock H, Pajdowska, Magdalena, Rahman, Shamima, Riordan, Gillian, Riley, Lisa, Roeben, Benjamin, Rutsch, Frank, Santer, Rene, Schiff, Manuel, Seders, Martine, Sequeira, Silvia, Sperl, Wolfgang, Staufner, Christian, Synofzik, Matthis, Taylor, Robert W, Trubicka, Joanna, Tsiakas, Konstantinos, Unal, Ozlem, Wassmer, Evangeline, Wedatilake, Yehani, Wolff, Toni, Prokisch, Holger, Morava, Eva, Pronicka, Ewa, Wevers, Ron A., de Brouwer, Arjan P M, Wortmann, Saskia B., Maas, Roeltje R, Iwanicka-Pronicka, Katarzyna, Kalkan-Ucar, Sema, Alhaddad, Bader, AlSayed, Moeenaldeen, Al-Owain, Mohammed, Al-Zaidan, Hamad I, Balasubramaniam, Shanti, Barić, Ivo, Bubshait, Dalal K, Burlina, Alberto, Christodoulou, John, Chung, Wendy K., Colombo, Roberto, Darin, Niklas, Freisinger, Peter, Garcia Silva, Maria Teresa, Grunewald, Stephanie, Haack, Tobias B., van Hasselt, Peter M, Hikmat, Omar, Hörster, Friederike, Isohanni, Pirjo, Ramzan, Khushnooda, Kovacs-Nagy, Reka, Krumina, Zita, Martin-Hernandez, Elena, Mayr, Johannes A, McClean, Patricia, Meirleir, Linda De, Naess, Karin, Ngu, Lock H, Pajdowska, Magdalena, Rahman, Shamima, Riordan, Gillian, Riley, Lisa, Roeben, Benjamin, Rutsch, Frank, Santer, Rene, Schiff, Manuel, Seders, Martine, Sequeira, Silvia, Sperl, Wolfgang, Staufner, Christian, Synofzik, Matthis, Taylor, Robert W, Trubicka, Joanna, Tsiakas, Konstantinos, Unal, Ozlem, Wassmer, Evangeline, Wedatilake, Yehani, Wolff, Toni, Prokisch, Holger, Morava, Eva, Pronicka, Ewa, Wevers, Ron A., de Brouwer, Arjan P M, and Wortmann, Saskia B.

Published
2017

12. Progressive deafness-dystonia due to SERAC1 mutations: A study of 67 cases

Author

Cluster C, Metabole ziekten patientenzorg, Child Health, Maas, Roeltje R, Iwanicka-Pronicka, Katarzyna, Kalkan-Ucar, Sema, Alhaddad, Bader, AlSayed, Moeenaldeen, Al-Owain, Mohammed, Al-Zaidan, Hamad I, Balasubramaniam, Shanti, Barić, Ivo, Bubshait, Dalal K, Burlina, Alberto, Christodoulou, John, Chung, Wendy K., Colombo, Roberto, Darin, Niklas, Freisinger, Peter, Garcia Silva, Maria Teresa, Grunewald, Stephanie, Haack, Tobias B., van Hasselt, Peter M, Hikmat, Omar, Hörster, Friederike, Isohanni, Pirjo, Ramzan, Khushnooda, Kovacs-Nagy, Reka, Krumina, Zita, Martin-Hernandez, Elena, Mayr, Johannes A, McClean, Patricia, Meirleir, Linda De, Naess, Karin, Ngu, Lock H, Pajdowska, Magdalena, Rahman, Shamima, Riordan, Gillian, Riley, Lisa, Roeben, Benjamin, Rutsch, Frank, Santer, Rene, Schiff, Manuel, Seders, Martine, Sequeira, Silvia, Sperl, Wolfgang, Staufner, Christian, Synofzik, Matthis, Taylor, Robert W, Trubicka, Joanna, Tsiakas, Konstantinos, Unal, Ozlem, Wassmer, Evangeline, Wedatilake, Yehani, Wolff, Toni, Prokisch, Holger, Morava, Eva, Pronicka, Ewa, Wevers, Ron A., de Brouwer, Arjan P M, Wortmann, Saskia B., Cluster C, Metabole ziekten patientenzorg, Child Health, Maas, Roeltje R, Iwanicka-Pronicka, Katarzyna, Kalkan-Ucar, Sema, Alhaddad, Bader, AlSayed, Moeenaldeen, Al-Owain, Mohammed, Al-Zaidan, Hamad I, Balasubramaniam, Shanti, Barić, Ivo, Bubshait, Dalal K, Burlina, Alberto, Christodoulou, John, Chung, Wendy K., Colombo, Roberto, Darin, Niklas, Freisinger, Peter, Garcia Silva, Maria Teresa, Grunewald, Stephanie, Haack, Tobias B., van Hasselt, Peter M, Hikmat, Omar, Hörster, Friederike, Isohanni, Pirjo, Ramzan, Khushnooda, Kovacs-Nagy, Reka, Krumina, Zita, Martin-Hernandez, Elena, Mayr, Johannes A, McClean, Patricia, Meirleir, Linda De, Naess, Karin, Ngu, Lock H, Pajdowska, Magdalena, Rahman, Shamima, Riordan, Gillian, Riley, Lisa, Roeben, Benjamin, Rutsch, Frank, Santer, Rene, Schiff, Manuel, Seders, Martine, Sequeira, Silvia, Sperl, Wolfgang, Staufner, Christian, Synofzik, Matthis, Taylor, Robert W, Trubicka, Joanna, Tsiakas, Konstantinos, Unal, Ozlem, Wassmer, Evangeline, Wedatilake, Yehani, Wolff, Toni, Prokisch, Holger, Morava, Eva, Pronicka, Ewa, Wevers, Ron A., de Brouwer, Arjan P M, and Wortmann, Saskia B.

Published
2017

18. ReSPECT personal resuscitation for adults?

Author

Wolff, Toni and Whitehouse, William P.

Subjects
COMMUNICATION, CARDIOPULMONARY resuscitation, EMERGENCY medical services, PHYSICIAN-patient relations, ADVANCE directives (Medical care)
Published
2017

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