Palliative care for children with a yet undiagnosed syndrome

Hoell, Jessica I.; Warfsmann, Jens; Gagnon, Gabriele; Trocan, Laura; Balzer, Stefan; Oommen, Prasad T.; Janßen, Gisela; Kuhlen, Michaela

doi:10.1007/s00431-017-2991-z

Cited by 20 publications

(15 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…10 It is known that children with respiratory symptoms, including irreversible influences of the central nervous system and irregular breathing, are more severely affected. [11][12][13] In our study, in more than half of the patients (52.9%) respiratory signs such as tachypnea and low oxygen saturation. Similar to the literature, these patients needed oxygen support, non-invasive mechanical ventilation, and home-type mechanical ventilation support.…”

Section: Discussionmentioning

confidence: 47%

Inborn errors of metabolism in palliative care

Harputluoğlu

Köse

Yılmaz

et al. 2021

Pediatrics International

View full text Add to dashboard Cite

Background: In parallel with the increase in the number of children with life-limiting or life-threatening diseases, the need for and right to pediatric palliative care is also increasing. This study aimed to examine the metabolic diseases, evaluate the symptoms, and review the needs of children who were admitted to the pediatric palliative care service. Methods: Following the approval of the local ethics committee (18/7/2019-107), the computer records of patients hospitalized in the pediatric palliative care service between December 1, 2018 and January 6, 2019 were reviewed retrospectively. Dr Behc ßet Uz Children's Hospital, Pediatric Palliative Care Center is third center in Turkey. Our pediatric palliative care center has one year of experience. Results: In the study period, there were 101 patients who were hospitalized in the pediatric palliative care service. Eighteen patients (19.7%) diagnosed with inborn errors of metabolism were included in the study. The mean age was 3.2 AE 2.1 (0-8) years. Although it could not be shown statistically, the duration of hospitalization of patients with congenital malformation was long. Conclusion: Pediatric palliative care provides the best care with the control of various symptoms in neurodegenerative congenital metabolic diseases that do not have treatment or treatment, but progressive symptoms cannot be prevented.

show abstract

Section: Discussionmentioning

confidence: 47%

Inborn errors of metabolism in palliative care

Harputluoğlu

Köse

Yılmaz

et al. 2021

Pediatrics International

View full text Add to dashboard Cite

show abstract

“…It is possible that such risks can be reduced by the ECHR system. In terms of content, the treatment process was found to be helpful as one of the major challenges of PPC is symptom control, which requires the interaction of all PPC professionals [3]. Due to the many years of support [6], it is hardly possible to trace the measures taken (successful or unsuccessful) without a systematic approach.…”

Section: Discussionmentioning

confidence: 99%

“…Some illnesses are rare or even unknown and accompanied by a variety of complex symptoms, such as agitation, seizures, or sleep disorders. The children are often cognitively impaired or unable to express themselves verbally due to the diseases [2][3][4][5].…”

Section: Introductionmentioning

confidence: 99%

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study

et al. 2021

View full text Add to dashboard Cite

Background: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs assessment, a prototype ECHR system was developed. Methods: To evaluate potential users’ perspective regarding the system, a qualitative observational study was conducted consisting of a concurrent think-aloud session and a semi-structured qualitative interview. Results: Twenty PPC professionals (nurses, physicians) from specialized outpatient PPC teams, a PPC unit, and medical offices rated the ECHR system as a helpful tool to improve the exchange and collection of information, communication between PPC professionals, and treatment planning. From the user’s point of view, the basic logic of the ECHR system should be further adapted to improve the interaction of data remirrored from patient records of outpatient and inpatient care with those entered via the system. The users wished for further functions (text search) and content (information on therapies). Some content, such as the treatment process, needs to be further adapted. Conclusion: The developed ECHR system needs to be more specific in some features by offering all available information; while for other features, be less specific to offer a quick overview. The ability to share information promptly and automatically was seen as a tremendous improvement to the quality of care for PPC patients.

show abstract

“…PPB gereksinimi olan çocuklarda solunum semptomları da sıklıkla vardır (18)(19)(20) . Çeşitli akciğer hastalıklarına ek olarak, kas hastalıkları ve/veya merkezi sinir sisteminin geri dönüşsüz etkilenimi nedeniyle düzensiz solunum da dahil olmak üzere solunum bulguları olan çocukların sık olduğu bildirilmiştir (18,20,22) . Bu hastalarda oksijen desteği, trakeostomi, non-invazif ventilasyon ve ev tipi mekanik ventilasyon desteği gerekmektedir.…”

Section: Discussionunclassified

Etiology in Pediatric Palliative Care: A Single Center Experience

Harputluoğlu¹,

Yılmaz²,

Çelik³

2020

BUCH

View full text Add to dashboard Cite

INTRODUCTION: Pediatric palliative care is the highest level of care aimed at improving the quality of life of all children and families with life-limiting and threatening diseases. Characteristics of children needing pediatric palliative care in Turkey is unknown. The aim of this study was to investigate the characteristics and needs of children at pediatric palliative care. METHODS: Following the approval of local ethics committe, hospital records of children followed up at Dr. Behçet Uz Children’s Hospital pediatric palliative care between November 2018 and November 2019 were retrospectively reviewed. RESULTS: A total of 97 patients were included into the study with a mean age of 5,2 ± 4,6 (0,3-17) years, and 53,6% (n = 48) of them were male. The most common diagnosis was cerebral palsy with 39.2% (n = 38) and congenital metabolic diseases with 20.6% (n = 20). The most common reason for hospitalization was lung infection (61.9%) and the most frequently used drugs were antibiotics (70.1%). In the first 7 days of hospitalization, the need for mechanical ventilator and child intensive care was significantly different (p = 0,020 and p = 0.020, respectively). DISCUSSION AND CONCLUSION: Children with a wide range of disorders, including cerebral palsy, metabolic disorders and muscle disorders, need pediatric palliative care. Lung infection is the most common reason for hospitalization, and patients who are hospitalized should be followed up more closely in the early period.

show abstract

Palliative care for children with a yet undiagnosed syndrome

Cited by 20 publications

References 16 publications

Inborn errors of metabolism in palliative care

Inborn errors of metabolism in palliative care

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study

Etiology in Pediatric Palliative Care: A Single Center Experience

Contact Info

Product

Resources

About