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[Constitution of a New Specialised Pediatric Home Care Team - First Year Experience]
Insights
Establishing a specialized home palliative care for children (SHPC) team is feasible and improves care quality. Analysis of initial patient data helps refine services for children needing palliative care.
Area of Science:
- Pediatric Palliative Care
- Healthcare Management
- Child Health Services
Background:
- Germany's 2007 Social Law V amendment established financial support for Specialized Home Palliative Care for Children (SHPC).
- Three SHPC teams in Hesse negotiated with health insurance providers.
- The University Children's Hospital in Giessen's SHPC team began treating its first patient in 2014.
Purpose of the Study:
- To describe the development of a SHPC team.
- To retrospectively analyze anonymized patient data after the first year of operation.
Main Methods:
- Retrospective analysis of anonymized patient data collected over the first 12 months of the SHPC team's operation.
Main Results:
- 35 pediatric patients (24 female, 11 male) were treated within 12 months; all deaths occurred at home.
- The 48-week survival rate was calculated at 78%.
- Common conditions included malignancies (45%), malformations (34%), and metabolic disorders (34%); 51% required crisis intervention, 51% infusion therapy, and only 10% received psychological care.
Conclusions:
- SHPC team formation is achievable quickly once funding is secured.
- Empathic family guidance for emergency decision-making is crucial.
- Annual patient data analysis is vital for enhancing palliative care quality and motivating new team development.
Background:
Since the amendment of the Social Law V in Germany in 2007 the financial basis for a Specialised Home Palliative Care for Children (SHPC) for children was established. In Hesse 3 different SHPC teams entered into collective negotiations with health insurance companies. In 2014, the team of the University Children's Hospital in Giessen started to treat the first patient with a lead time of two months.
Methods:
Thus in this paper the development of a SHPC team is described. After the first year anonymized patients data were retrospectively analyzed.
Results:
Within 12 months 35 patients, 24 females and 11 males, were treated. All of the 6 patients who died, died at home. Calculated 48 weeks survival was 78%. 45% of the patients suffered from malignancies, 34% of malformations and 34% had metabolic disorders. 51% needed crisis intervention and 51% infusion therapy. Only 26% of parents denied cardiopulmonary resuscitation (CPR). Only 10% of the patients or their families received professional psychological care.
Conclusion:
Formation of a SHPC is feasible within a short time period once a financial basis is established. So, empathic guidance of families to help decision making for emergency situations are considered to be important. Analysis of patient's data after one year could help to improve the quality of care. Our data provides information for developing a palliative care team und could motivate colleagues to start the job.
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