Pediatric Patients Receiving Specialized Palliative Home Care According to German Law: A Prospective Multicenter Cohort Study

Abstract

In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male). The majority had non-cancer conditions (72%). The most common symptoms were cognitive impairment, somatic pain, impairment in communication or swallowing difficulties. Swallowing difficulties, seizures, and spasticity occurred significantly more often in non-cancer patients (p < 0.01). Cancer patients received antiemetics significantly more often (permanent and on demand) than non-cancer patients (p < 0.01). Significantly more non-cancer patients had some type of feeding tube (57.3%) or received oxygen (33.3%) (p < 0.01). Central venous catheters had been fitted in 20% of the patients, mostly in cancer patients (p < 0.001). Tracheostomy tubes (9.3%) or ventilation (14.7%) were only used in non-cancer patients. In conclusion, patients referred to SPPHC are a diverse cohort with complex conditions including a large range of neurologically originating symptoms. The care of pediatric palliative care patients with cancer is different to the care of non-cancer patients.

The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study

“…Thirty-five percent of patients usually seen by this service have an oncologic diagnosis, not present in the current study. 46,47 Future research might seek to include a representative group of diagnoses, to collect data at additional sites and locations, as well as during future waves of the pandemic (e.g., one State in Australia is currently experiencing a second wave of COVID-19 in July 2020, including cases within a Children's hospital).…”

Noninvasive Ventilation in Palliative Care and Ethical Dilemma

“…Epidemiological data on long term NIV use in children have identified patient groups that are commonly treated with this respiratory support modality but also point to certain differences. While upper airway obstruction, NMD and pulmonary/chest disorders represent common conditions where NIV is provided, certain reports indicate not infrequent use also in children with cerebral palsy, neurodegenerative disorders, and rare syndromic illnesses (15,23,24). Such real-life findings reflect important differences in the management attitudes throughout different societies.…”

“…Nolte-Buchholtz et al ( 16 ) described characteristics of newly referred patients to nine tertiary specialized pediatric palliative home care teams over a period of 6 months. Seventy-five patients with a median age of 7.7 years (range 0–31 years) were included.…”

Electronic Health Records in Specialized Pediatric Palliative Care: A Qualitative Needs Assessment among Professionals Experienced and Inexperienced in Electronic Documentation

“…PPC supports children and adolescents with “life-limiting and life-threatening conditions, from the point of diagnosis or recognition throughout the child’s life and death” [ 11 ] (p. 9) and their families. Most patients in PPC have severe neurological and physical impairments due to a large variety of rare diseases [ 12 , 13 , 14 ]. They suffer a broad spectrum of interrelated symptoms [ 15 ] and are in need of a plethora of medication and aids [ 12 , 16 ].…”

“…They are implemented in hospitals, hospices, or communities and are typically staffed with physicians, nurses, psychologists, or social workers with specialty training in PPC [ 11 ]. Specialized outpatient PPC teams (SOPPC) offer home care with a medical focus [ 12 ]. Inpatient care in specialized PPC units (PPCU) may be required in case of complications, symptom escalations at home, or when outpatient PPC structures lack sufficient resources to address complex symptom constellations [ 12 , 17 ].…”