Table 1:
Study Characteristics
| Author (Year) | Country | Study Design | Source Population | Participants | Diagnostic Categories | SPPC Characteristics | Outcomes | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Sample Size | Characteristics | Pt Symptoms, QOL | Caregiver | EOL Discussions | EOL Care Patterns | HC Utilization | Supportive Services | ||||||
| Chong (2018) | Singapore | RCoh | Hospital-based | N=138 (SPPC: 71; non-PPC: 67) | Pts diagnosed 1 month-19 years of age who died between 2012–2015 at home or hospital AND had received care at participating hospitals (SPPC group included 7 pts that were referred from non-participating hospitals) | Cancer (43%), Other (57%) | Home-based SPPC service consisting of 1 SPPC MD, 4 pediatric nurses, 2 social workers, and 1 administrative executive; provide home and inpatient consults; 24/7 support provided by a mixed adult-pediatric service | X | X | ||||
| Ub/a | SPPC Program-based | N=56 | Pts 0–19 years old referred to SPPC team during 2012–2015 period | Cancer (18%), Congenital defects (50%), cerebral palsy (13%), neurodegenerative disorders (14%), other (5%) | X | X | |||||||
| Fraser (2013) | England | RCoh | Population-based (county level) | N=443 (SPPC: 132; non-PPC: 311) | Pts 0–19 years old diagnosed between 1990–2009 (identified via cancer registry), who died prior to 08/2011 and who could be linked to hospital episode statistics data | Cancer (100%) | Hospice-based SPPC service; full-time SPPC consultant appointed in 2004; 24/7 on-call medical service; provide home visits and inpatient care | X | |||||
| Friedrichsdorf (2015) | US | RCoh | Hospital-based | N=60 (SPPC: 30; non-PPC: 30) | Bereaved parents of pts 0–17 years old who died between 2002–2008 | Cancer (100%) | Palliative home care and/or home hospice care; visits by SPPC nurses, social workers, child life specialists, chaplaincy, SPPC physician; providing SPPC in community, outpatient clinic, and inpatient setting; 24/7 on-call service | X | X | X | |||
| Gans (2015) | US | Ub/a | Population-based (county level) | N=93 | Primary caregivers of pts <21 years old who enrolled in SPPC program between 2010–2012, who were deemed likely to be hospitalized for >30 days in next year | Neurologic/neuromuscular (44%), respiratory failure (12%), transplant-related complications (12%), cancer (13%). other (19%) | SPPC program contracting with nurses and social workers at multiple hospice and home health agencies across 11 counties; access to 24/7 on-call nurse | X | |||||
| Golan (2008) | Israel | RCoh | Hospital-based | N=246 (historic cohort: 144; intervention cohort: 102) | Historic cohort: pts who died of cancer between 1990–1999 and received care at the participating pediatric oncology department Intervention cohort: pts who died of cancer between 1999–2005 and received care at the participating pediatric oncology department |
Cancer (100%) | Oncology-based SPPC team; full-time SPPC nurses; provide ambulatory and inpatient care (SPPC unit), home visits, and bereavement follow-up; they work with interdisciplinary oncology staff which includes oncologists, social workers, psychologists, creative art/child life specialists, nutritionists, physical therapists, and spiritual advisor. Not all pts in intervention cohort were necessarily exposed to SPPC | X | |||||
| Goldhagen (2016) | US | Ub/a | SPPC Program-based | N=40 | Pts 0–18 years old enrolled in SPPC who had documented hospital admissions during 2 years prior to and first 2 quarters after enrollment between 2002–2006 | Neurologic (27%), congenital anomalies (27%), neoplasms (13%), symptoms/signs unspecified (9%), circulatory system (6%), injury/poisoning 16%). other 112%) | Community-based SPPC program providing medical, nursing, social work, child life, spiritual, and volunteer services | X | |||||
| Groh (2013) | Germany | Ub/a | SPPC Program-based | N=40 | Primary caregivers of pts newly admitted to SPPC service between 2011–2012 | Neurologic (33%), cancer (25%), congenital anomalies (20%), metabolic (18%), cardiovascular (5%) | Home-based SPPC consisting of 3 pediatricians, 2 nurses, social worker, chaplain, all trained in SPPC; 24/7 on-call service | X | X | ||||
| Gupta (2013) | England | Ub/a | SPPC Program-based | N=23 | Parents of pts referred to SPPC program between 2005–2007 | Unknown - authors present diagnostic categories for all referrals, not subset comprising study cohort | Community-based SPPC program consisting of nurses, clinical psychology, palliative care support workers, cultural development worker, bereavement support worker | X | |||||
| Hancock(2018) | US | RCT | Hospital-based | N=40 (intervention arm: 18; control arm: 20) | Mothers of neonates with single-ventricle heart disease admitted for first-stage palliative surgery referred during pregnancy to pediatric cardiology between 04–2013 and 08–2015 | Single ventricle heart disease (100%) | Hospital-based SPPC consisting of 1 physician, nurse practitioner, nurse, and social worker all trained and certified in SPPC | X | |||||
| Hays (2006) | US | Ub/a | Hospital-based | N=41 | Parents of pts 0–21 years old with severe illness that might result in death within 24 months and who were referred to SPPC program over 2-year period | Neurologic (44%), cancer (34%), congenital anomalies (10%), metabolic (5%), cardiovascular (5%), respiratory (2%) | Hospital-based multidisciplinary team (consisting of physicians, advanced practice nurses, social worker, benefits coordinator) that implemented 3 major program components: 1) clinical decision-making; 2) provider education on pain and symptom management, EOL care, and ethical decision-making; and 3) flexible administration of benefits and co-case management | X | X | ||||
| Horrocks (2002) | England | Ub/a | SPPC Program-based | N=16 | Parents of pts who were referred to SPPC service 5 months after service was established, excluded parents of pts who were “close to death” at time of referral | Degenerative (38%), neurologic (25%), circulatory (13%) congenital anomalies (13%), metabolic (6%), other (6%) | Community-based service consisting of 3 community pediatric nurses and 2 part-time child psychologists, supported by hospital-based consultants and senior nurse managers | X | |||||
| Kassam (2015) | Canada | RCoh | Hospital-based | N=75 (SPPC: 42; non-PPC: 33) | Parents of pts who died between 2005–2011, with death occurring >4 weeks after diagnosis | Cancer (100%) | Hospital-based SPPC team, no further details provided. Exposure defined based on parent report and confirmed through medical record review | X | X | X | |||
| Keele (2013) | US | RCoh | Population-based (national level) | N=24,342 (SPPC: 919; non-PPC: 23,423) | Pts <18 years old who died >5 days after admission between 2001–2011 from 40+ children’s hospitals comprising Children’s Hospital Association (secondary analysis of Pediatric Health Information System data) | Neonatal (41%), respiratory (14%), circulatory (11%), neurologic (8%), lymphatic/hematopoietic/malignancy (6%), gastrointestinal (6%), infectious disease (5%), other (11%). 85% classified as complex chronic | Hospital-based SPPC characteristics vary by site. Exposure defined by ICD-9 code for SPPC services during final hospital admission | X | X | ||||
| Osenga (2016) | US | RCoh | Hospital-based | N=114 (SPPC: 28; non-PPC: 86) | Pts 0–18 years old who were treated for >24 hours prior to death and who died while inpatient between 2012–2013 | Neonatal (50%), trauma/other (27%), cardiovascular (15%), hematology/oncology (8%) | Hospital-based SPPC (same as Friedrichsdorf (2015) | X | X | X | |||
| Petteys (2015) | US | PCoh | Hospital-based | N=22 (SPPC: 6; non-PPC: 16) | Parents of pts in NICU who had anticipated stay of >2 weeks | Unknown | Hospital-based SPPC service consisting of advanced practice nurse and registered nurse with extensive NICU experience, both trained in SPPC; additional medical support as needed | X | |||||
| Pierucci (2001) | US | RCoh | Hospital-based | N=196 (SPPC: 25; non-PPC: 171) | Pts <1 year old at time of death and who died while inpatient between 1994–1997 | Cardiovascular (39%), trauma (11%), congenital anomalies (10%), gastrointestinal (7%), respiratory (7%), neonatal (7%), infectious disease (6%), genetic/chromosomal (5%), myopathy (3%), metabolic (2%), dehydration (2%), cancer (1%) | Hospital-based SPPC consultation service consisting of 2 clinical nurse specialists and a physician medical director | X | X | X | |||
| Postier (2014) | US | Ub/a | SPPC Program-based | N=425 | Pts 1–21 years old who initiated home- or hospice-based SPPC service between 2000–2010 | Cancer (47%), non-cancer (53%) | Hospital-based SPPC (same as Friedrichsdorf (2015) | X | |||||
| Schmidt (2013) | Germany | RCoh | Population-based (state/province level) | N=96 (historic cohort: 48; intervention cohort: 48) | Historic cohort: parents of pts who died of cancer between 1999–2000 and were seen at a participating oncology department Intervention cohort: parents of pts who died of cancer between 2005–2006 and were seen at a participating oncology department |
Cancer (100%) | No details provided on specific SPPC state teams. Authors describe a series of national initiatives (policies, laws, academic/educational, SPPC service standards) that helped increase the provision of SPPC nationwide (>pediatric oncology departments offering SPPC, >SPPC home care programs). These changes took place in the early 2000s, between historic and intervention cohorts. Not all patients in intervention cohort were necessarily exposed to SPPC | X | X | X | X | X | |
| Smith (2015) | US | RCoh | Hospital-based | N=902 (SPPC: 86; non-PPC: 816) | Pts discharged in 2010 who represent top decile of inpatient costs | Unknown | Hospital-based SPPC service consisting of medical director, advanced practice nurse, registered nurse, social worker, interfaith chaplain | X | |||||
| Snaman (2017) | US | RCoh | Hospital-based | N=69 (SPPC: 50; non-PPC: 19) | Adolescents and young adults with cancer who died at the hospital between 2008–2014 | Cancer(100%) | Hospital-based SPPC team, no further details provided. SPPC exposure defined based on medical record data | X | X | X | |||
| Ullrich (2016) | US | RCoh | Hospital-based | N=147 (SPPC: 37; non-PPC: 110) | Pts who underwent stem cell transplant for any indication and died between 2004–2012 | Hematologic malignancy (65%), solid/brain tumor (15%), non-malignancy (20%) | Hospital-based SPPC team, no further details provided (same as Wolfe, 2008) | X | X | X | |||
| Vern-Gross (2015) | US | RCoh | Hospital-based | N=191 (historic cohort: 134; intervention cohort: 57) | Historic cohort: pts <21 years old who died between 2001 2005, prior to establishment of SPPC service Intervention cohort: pts <21 years old who died between 2007–2012 and received SPPC consultation prior to death |
Cancer (100%) | Hospital-based SPPC program began as pilot program in 2007, expanded into institution-wide program available to all pts beginning in 2008; provide inpatient consultations and ongoing SPPC and hospice support for pts and families if transferred to home institutions | X | X | X | |||
| Widger (2017) | Canada | RCoh | Population-based (state/province level) | N=572 (SPPC: 166; PPC: 100; non-PPC: 306) | Nested cohort of a deceased cohort of children with cancer diagnosed at <15 years old who died between 2000 and 2012 <18 years. Patients were included if they received care at institutions with SPPC and died at a time when a clinical SPPC database was available | Cancer (100%) | Hospital-based SPPC, no further details provided about teams. Exposure levels: SPPC: patients registered in one of the SPPC databases: PPC: patients with ≥2 physician billing or inpatient diagnostic codes compatible with PC provision (no need of PC training); in both cases first PC contact had to occur > 30 days prior to death | X | X | ||||
| Wolfe (2008) | US | RCoh | Hospital-based | N=221 (historic cohort: 102; intervention cohort: 119) | Historic cohort: parents of pts who died between 1990–1997, prior to establishment of SPPC service Intervention cohort: parents of pts who died between 1997–2004, following establishment of SPPC service |
Cancer(100%) | Hospital-based SPPC team providing inpatient, outpatient, and home-based consultations and ongoing education about SPPC to pediatric oncology practitioners; team consists of physician, nurse, social worker. Not all pts in intervention cohort received SPPC consultation (approximately half) | X | X | X | X | X | |
Abbreviations: EOL - end of life; HC - healthcare; Pt(s) - patient(s); QOL - quality of life; SPPC -specialized pediatric palliative care; PPC - general pediatric palliative care provision; non-PPC - no pediatric palliative care; NICU - neonatal intensive care unit; ICD-9 - International Classification of Diseases, Ninth Revision; US - United States; PCoh - prospective cohort; RCoh - retrospective cohort; Ub/a - uncontrolled before/after; RCT - randomized control trial.