Effectiveness of a Pediatric Palliative Home Care Team as Experienced by Parents and Health Care Professionals

Vollenbroich, René; Duroux, A; Grasser, Monika; Brandstätter, Monika; Borasio, Gian Domenico; Führer, Monika

doi:10.1089/jpm.2011.0196

Cited by 109 publications

(117 citation statements)

References 50 publications

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“…Many studies have described the key features associated with providing home-based palliative care to children with cancer from the parent's perspective, health care professionals' perspective, and/or by reviewing the child's medical information [17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32] . On the other hand, the experiences of GPs with respect to home-based palliative care in children have received relatively little attention 27 30 31 .…”

Section: Accepted Manuscriptmentioning

confidence: 99%

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Geest

Bindels

Pluijm

et al. 2017

Journal of Pain and Symptom Management

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ContextAlthough a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. ObjectivesTo explore the perspectives of GPs who care for children with advanced-stage cancer in a homebased setting. MethodsIn this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). ResultsA total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients.The median interval between the child's death and completing the questionnaire was 7 years.The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%).Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's M A N U S C R I P T A C C E P T E D ACCEPTED MANUSCRIPT3 death, and they rated their own distress level as relatively high during the terminal phase (median score: 6, range: 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. ConclusionIn general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among healthcare professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death.

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Section: Accepted Manuscriptmentioning

confidence: 99%

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Geest

Bindels

Pluijm

et al. 2017

Journal of Pain and Symptom Management

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show abstract

“…In light of this recommendation, persistent rising health care costs, and the ensuing trend of moving more patient care out of hospitals and into the home, a critical need exists to find new models to deliver coordinated, patient-and family-centered, community-based, and cost-effective care for children with life-limiting conditions. Efforts to facilitate the delivery of pediatric palliative or hospice care may enable a larger percentage of terminally ill children to receive high-quality care in their own home (11,12). As home health technologies develop, so does the range of services.…”

Section: A C C E P T E D Accepted Manuscriptmentioning

confidence: 99%

“…A growing body of evidence suggests that the location in which children receive palliative care has significant implications. When palliative care is provided in the home, parental satisfaction appears to be high, and subsequent adaptation and outcomes for parents and siblings improves (12)(13)(14)(15). One model for such care is Partners for Children (PFC), a pediatric palliative care program in California.…”

Section: A C C E P T E D Accepted Manuscriptmentioning

confidence: 99%

Cost Analysis and Policy Implications of a Pediatric Palliative Care Program

Gans

Hadler²,

Chen³

et al. 2016

Journal of Pain and Symptom Management

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Context. In 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the child's life expectancy. Objectives.We assessed the change from prior to PFC enrollment to the enrolled period in: (1) health care costs per enrollee per month (PEPM); (2) costs by service type and diagnosis category; and, (3) health care utilization (days of inpatient care and length of hospital stay). Methods.A pre-post analysis compared enrollees' health care costs and utilization up to 24 months prior to enrollment with their costs during participation in the pilot, from January 2010 through December 2012. Analyses were conducted using paid Medicaid claims and program enrollment data.Results. The average PEPM health care costs of program enrollees decreased by $3,331 from prior to their participation in PFC to the enrolled period, driven by a reduction in inpatient costs of $4,897 PEPM. PFC enrollees experienced a nearly 50% reduction in the average number of inpatient days per month, from 4.2 to 2.3. Average length of stay per hospitalization dropped from an average of 16.7 days prior to enrollment to 6.5 days while in the program. Conclusion.Through the provision of home-based therapeutic services, 24/7 access to medical advice, and enhanced, personally tailored care coordination, PFC demonstrated an effective way to reduce costs for children with life-limiting conditions by moving from costly inpatient care to more coordinated and less expensive outpatient care. PFC's home-based care strategy is a cost-effective model for pediatric palliative care elsewhere.

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“…However, for this study we were interested in the care provided through programs with pediatric palliative care specialists that fit our inclusion criteria, as these types of programs are linked to higher-quality care. [2][3][4][5][6] An important component of the setting of care in Canada is the availability of free-standing pediatric hospices, often associated with a children's hospital, that have been developed after the model of hospices in the United Kingdom. In contrast to "hospice care" in the United States, a term typically denoting additional resources provided at the end of life, often in the home, Canadian pediatric hospices refer to physical buildings that provide respite care earlier in the patient's course along with specialized palliative care services throughout the patient's course.…”

Section: Settingmentioning

confidence: 99%

Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study

et al. 2016

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Effectiveness of a Pediatric Palliative Home Care Team as Experienced by Parents and Health Care Professionals

Abstract: Involvement of a PPHCT is experienced as a substantial improvement of care by parents and HCPs. Coordination of palliative care during the last phase of life appears to be an important quality factor for the home care of dying children and their families.

Cited by 109 publications

References 50 publications

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Cost Analysis and Policy Implications of a Pediatric Palliative Care Program

Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study

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