Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home-based end-of-life care.

Abstract:

BACKGROUND:Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric-trained hospice providers. METHODS:The purpose of this longitudinal palliative telehealth support pilot study was to explore physical and emotional symptom burden and family impact assessments for children with terminal cancer receiving home based-hospice care. Each child received standard of care home-based hospice care from an adult-trained rural hospice team with the inclusion of telehealth pediatric palliative care visits at a scheduled minimum of every 14 days. RESULTS:Eleven children (mean age 11.9 years) received pediatric palliative telehealth visits a minimum of every 14 days, with an average of 4.8 additional telehealth visits initiated by the family. Average time from enrollment to death was 21.6 days (range 4-95). Children self-reported higher physical symptom prevalence than parents or hospice nurses perceived the child was experiencing at time of hospice enrollment with underrecognition of the child's emotional burden. At the time of hospice enrollment, family impact was reported by family caregivers as 46.4/100 (SD 18.7), with noted trend of improved family function while receiving home hospice care with telehealth support. All children remained at home for end-of-life care. CONCLUSION:Pediatric palliative care telehealth combined with adult-trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home-based hospice care.

journal_name

Pediatr Blood Cancer

journal_title

Pediatric blood & cancer

authors

Weaver MS,Shostrom VK,Neumann ML,Robinson JE,Hinds PS

doi

10.1002/pbc.28921

subject

Has Abstract

pub_date

2021-02-01 00:00:00

pages

e28921

eissn

1545-5009

issn

1545-5017

pub_type

杂志文章
  • Intermittent oral trimethoprim/sulfamethoxazole on two non-consecutive days per week is effective as Pneumocystis jiroveci pneumonia prophylaxis in pediatric patients receiving chemotherapy or hematopoietic stem cell transplantation.

    abstract::Pneumocystis jiroveci pneumonia (PCP) is a serious complication in patients receiving chemotherapy or hematopoietic stem cell transplantation. Current recommendations for trimethoprim-sulfamethoxazole (TMP-SMZ) dosing as PCP prophylaxis in immunocompromised patients are based on either daily dosing or dosing three con...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.21774

    authors: Ohata Y,Ohta H,Hashii Y,Tokimasa S,Ozono K,Hara J

    更新日期:2009-01-01 00:00:00

  • Access to specialized pediatric cancer care in Switzerland.

    abstract:BACKGROUND:Specialized pediatric cancer centers (PCCs) are thought to be essential to obtain state-of-the-art care for children and adolescents. We determined the proportion of childhood cancer patients not treated in a PCC, and described their characteristics and place of treatment. PROCEDURE:The Swiss Childhood Canc...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,多中心研究

    doi:10.1002/pbc.22426

    authors: Adam M,von der Weid N,Michel G,Zwahlen M,Lutz JM,Probst-Hensch N,Niggli F,Kuehni C,Swiss Pediatric Oncology Group (SPOG).,Swiss Association of Cancer Registries (ASRT).

    更新日期:2010-05-01 00:00:00

  • A meta-analysis of the neuropsychological effects of chemotherapy in the treatment of childhood cancer.

    abstract:BACKGROUND:Long-term neuropsychological deficits associated with pediatric cancers and the related treatments have been consistently reported. Whole brain cranial radiation therapy (CRT) is associated with neurocognitive impairment. As a result, physicians are reticent to use CRT in favor of systemic or intrathecal che...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,meta分析

    doi:10.1002/pbc.26117

    authors: Pierson C,Waite E,Pyykkonen B

    更新日期:2016-11-01 00:00:00

  • Nephroblastoma: does the decrease in tumor volume under preoperative chemotherapy predict the lymph nodes status at surgery?

    abstract:BACKGROUND:Partial nephrectomy (NSS) for unilateral nephroblastoma may be beneficial, although in case of regional lymph node (LN) involvement, radiotherapy counteracts the functional benefit of NSS. The aim is to verify whether decrease of tumor volume under preoperative chemotherapy implies clearance of regional LN. ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.23147

    authors: Godzinski J,van Tinteren H,de Kraker J,Graf N,Bergeron C,Heij H,von Schweinitz D,Fuchs J,Cecchetto G,Audry G,Gauthier F,Sandstedt B,SIOP Nephroblastoma Trial & Study Committee.

    更新日期:2011-12-15 00:00:00

  • Tumor size as a predictor of outcome in pediatric non-metastatic osteosarcoma of the extremity.

    abstract:BACKGROUND:Better predictors of outcome would allow improved risk-adapted therapy for pediatric nonmetastatic osteosarcoma of the extremity. We investigated the predictive value of MR imaging-based measures of absolute and relative tumor size and volume at the time of diagnosis. We also assessed the relation of tumor s...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.20077

    authors: Kaste SC,Liu T,Billups CA,Daw NC,Pratt CB,Meyer WH

    更新日期:2004-12-01 00:00:00

  • Transverse myelitis as an unexpected complication following treatment with dinutuximab in pediatric patients with high-risk neuroblastoma: A case series.

    abstract::Immunotherapy with the anti-GD2 monoclonal antibody ch14.18, or dinutuximab, represents an important therapeutic advance in the treatment of pediatric high-risk neuroblastoma and is now considered part of standard of care in this patient population. To date, transverse myelitis as a result of dinutuximab therapy has n...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.26732

    authors: Ding YY,Panzer J,Maris JM,Castañeda A,Gomez-Chiari M,Mora J

    更新日期:2018-01-01 00:00:00

  • Gender affects survival for medulloblastoma only in older children and adults: a study from the Surveillance Epidemiology and End Results Registry.

    abstract:BACKGROUND:Males have a higher incidence of medulloblastoma (MB) than females, but the effect of gender on survival is unclear. Studies have yielded conflicting results, possibly due to small sample sizes or differences in how researchers defined MB. We aimed to determine the effect of gender on survival in MB using a ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.21832

    authors: Curran EK,Sainani KL,Le GM,Propp JM,Fisher PG

    更新日期:2009-01-01 00:00:00

  • Oral leukoplakia in patients with Fanconi anaemia without hematopoietic stem cell transplantation.

    abstract:BACKGROUND:Fanconi anaemia is a genetic disease characterized by congenital abnormalities, progressive bone marrow failure, and a higher predisposition of oral squamous cell carcinoma. The purpose of this study was to evaluate the prevalence of oral mucosa lesions in patients with Fanconi anaemia without hematopoietic ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.25417

    authors: Grein Cavalcanti L,Lyko KF,Araújo RL,Amenábar JM,Bonfim C,Torres-Pereira CC

    更新日期:2015-06-01 00:00:00

  • Risk prediction of fever in neutropenia in children with cancer: a step towards individually tailored supportive therapy?

    abstract:BACKGROUND:Fever in severe chemotherapy-induced neutropenia (FN) is the most frequent manifestation of a potentially lethal complication of current intensive chemotherapy regimens. This study aimed at establishing models predicting the risk of FN, and of FN with bacteremia, in pediatric cancer patients. METHODS:In a s...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.21726

    authors: Wicki S,Keisker A,Aebi C,Leibundgut K,Hirt A,Ammann RA

    更新日期:2008-12-01 00:00:00

  • Psychological distress in long-term survivors of solid tumors diagnosed in childhood: a report from the childhood cancer survivor study.

    abstract:PURPOSE:To evaluate and compare psychological distress in long-term survivors of solid tumors diagnosed in childhood and their siblings, and to identify significant correlates of psychological distress. PROCEDURE:Adult survivors (2,778) of solid tumors diagnosed in childhood and 2,925 siblings completed a long-term fo...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,多中心研究

    doi:10.1002/pbc.20914

    authors: Zebrack BJ,Zevon MA,Turk N,Nagarajan R,Whitton J,Robison LL,Zeltzer LK

    更新日期:2007-07-01 00:00:00

  • No improvement in clinical trial enrollment for adolescents and young adults with cancer at a children's hospital.

    abstract:BACKGROUND:We have previously published data from 2001 to 2006 showing that adolescent and young adult (AYA) oncology patients have significantly lower therapeutic clinical trial enrollment rates than younger patients. Our objective was to determine if the enrollment of AYA patients on therapeutic studies at the same i...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.26638

    authors: Jacob SA,Shaw PH

    更新日期:2017-12-01 00:00:00

  • Phase 1 study of pomalidomide in children with recurrent, refractory, and progressive central nervous system tumors: A Pediatric Brain Tumor Consortium trial.

    abstract:BACKGROUND:Central nervous system (CNS) malignancies are the most common solid tumors among children, and novel therapies are needed to help improve survival. Pomalidomide is an immunomodulatory agent that displays antiangiogenic and cytotoxic activity, making it an appropriate candidate to explore in pediatric CNS tum...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.28756

    authors: Fangusaro J,Mitchell DA,Kocak M,Robinson GW,Baxter PA,Hwang EI,Huang J,Onar-Thomas A,Dunkel IJ,Fouladi M,Warren KE

    更新日期:2021-02-01 00:00:00

  • Barriers and facilitators of clinical trial enrollment in a network of community-based pediatric oncology clinics.

    abstract:INTRODUCTION:Major advances in the field of pediatric oncology have resulted from rigorous, prospective clinical oncology research trials. Optimizing access for all children and adolescents to clinical research trials is an important goal. Barriers to clinical trial enrollment are numerous, involving the health care sy...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.28023

    authors: Russo C,Stout L,House T,Santana VM

    更新日期:2020-04-01 00:00:00

  • Optimization of percutaneous biopsy for diagnosis and pretreatment risk assessment of neuroblastoma.

    abstract:BACKGROUND:Image-guided percutaneous core needle biopsy (PCNB) is increasingly utilized to diagnose solid tumors. The objective of this study is to determine whether PCNB is adequate for modern biologic characterization of neuroblastoma. PROCEDURE:A multi-institutional retrospective study was performed by the Pediatri...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章,多中心研究

    doi:10.1002/pbc.28153

    authors: Overman RE,Kartal TT,Cunningham AJ,Fialkowski EA,Naik-Mathuria BJ,Vasudevan SA,Malek MM,Kalsi R,Le HD,Stafford LC,Lautz TB,Many BT,Jones RE,Bütter A,Davidson J,Williams A,Dasgupta R,Lewis J,Troutt M,Aldrink JH,Man

    更新日期:2020-05-01 00:00:00

  • The influence of patient reported outcomes on the discussion of psychosocial issues in children with cancer.

    abstract:BACKGROUND:This study investigates the effect of using patient reported outcomes (PROs) about health-related quality of life (HRQOL) in clinical practice on the type and amount of psychosocial topics discussed during a paediatric oncology consultation. PROCEDURE:Children (N = 193) with cancer participated in a sequent...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章,多中心研究

    doi:10.1002/pbc.24089

    authors: Engelen V,van Zwieten M,Koopman H,Detmar S,Caron H,Brons P,Egeler M,Kaspers GJ,Grootenhuis M

    更新日期:2012-07-15 00:00:00

  • Intensity-Modulated Radiation Therapy With Dose Painting: A Brain-Sparing Technique for Intracranial Germ Cell Tumors.

    abstract:BACKGROUND:We sought to assess patterns of failure in pediatric patients with intracranial germ cell tumors (GCT) treated with intensity-modulated radiation therapy with dose painting (DP-IMRT). PROCEDURE:Between July 2007 and October 2013, 11 patients with localized GCT-five germinomas and six nongerminoma GCT (NGGCT...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.25867

    authors: Yang JC,Terezakis SA,Dunkel IJ,Gilheeney SW,Wolden SL

    更新日期:2016-04-01 00:00:00

  • Indolent course of brainstem tumors with K27M-H3.3 mutation.

    abstract::Diffuse intrinsic pontine glioma (DIPG) is characterized by a short history of brainstem symptoms and well-known magnetic resonance imaging features with a fatal outcome. However, we report three unusual cases of brainstem tumors with an initial indolent and protracted course, which subsequently developed the classica...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.28102

    authors: Baroni LV,Solano-Paez P,Nobre L,Michaeli O,Hawkins C,Laughlin S,Bartels U,Ramaswamy V,Bouffet E

    更新日期:2020-03-01 00:00:00

  • Markers of bone turnover are associated with growth and development in young subjects with sickle cell anemia.

    abstract::Children with sickle cell anemia (SCA) have low bone mass though bone turnover has not been well described. In this study, growth and pubertal development were assessed twice, 1 year apart, in 80 young subjects with type-SS SCA, while whole body bone mineral content (BMC) and density where measured in a subset (n = 46...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.21147

    authors: Fung EB,Kawchak DA,Zemel BS,Rovner AJ,Ohene-Frempong K,Stallings VA

    更新日期:2008-03-01 00:00:00

  • Children with low-risk acute lymphoblastic leukemia are at highest risk of second cancers.

    abstract:BACKGROUND:The improved survival rates for childhood acute lymphoblastic leukemia (ALL) may be jeopardized by the development of a second cancer, which has been associated with thiopurine therapy. PROCEDURE:We retrospectively analyzed three sequential Nordic Society of Paediatric Haematology and Oncology's protocols c...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.26518

    authors: Nielsen SN,Eriksson F,Rosthoej S,Andersen MK,Forestier E,Hasle H,Hjalgrim LL,Aasberg A,Abrahamsson J,Heyman M,Jónsson ÓG,Pruunsild K,Vaitkeviciené GE,Vettenranta K,Schmiegelow K

    更新日期:2017-10-01 00:00:00

  • Chronic lymphocytic leukemia in a child: a challenging diagnosis in pediatric oncology practice.

    abstract::Chronic lymphocytic leukemia/lymphoma (CLL) is an extremely rare disease during childhood. We report a 16-year-old female who presented with lymphadenopathies and she was diagnosed as T cell lymphoblastic lymphoma. Her chemotherapy response was minimal and clinical findings were unusual. Therefore, her biopsy specimen...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.24865

    authors: Demir HA,Bayhan T,Üner A,Kurtulan O,Karakuş E,Emir S,Özyörük D,Ceylaner S

    更新日期:2014-05-01 00:00:00

  • Changes in bone mineral density in survivors of childhood acute lymphoblastic leukemia.

    abstract:BACKGROUND:There is little information about factors modulating bone mineral density (BMD) in survivors of childhood acute lymphoblastic leukemia (ALL). PROCEDURE:We analyzed data from 57 survivors (26 male, 52 Caucasian) who underwent two serial quantitative computed tomography (QCT) studies of BMD. Using multiple li...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.20553

    authors: Kaste SC,Rai SN,Fleming K,McCammon EA,Tylavsky FA,Danish RK,Rose SR,Sitter CD,Pui CH,Hudson MM

    更新日期:2006-01-01 00:00:00

  • Asparaginase formulation impacts hypertriglyceridemia during therapy for acute lymphoblastic leukemia.

    abstract:BACKGROUND:Glucocorticoids and asparaginase, used to treat acute lymphoblastic leukemia (ALL), can cause hypertriglyceridemia. We compared triglyceride levels, risk factors, and associated toxicities in two ALL trials at St. Jude Children's Research Hospital with identical glucocorticoid regimens, but different asparag...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.28040

    authors: Finch ER,Smith CA,Yang W,Liu Y,Kornegay NM,Panetta JC,Crews KR,Molinelli AR,Cheng C,Pei D,Ramsey LB,Karol SE,Inaba H,Sandlund JT,Metzger M,Evans WE,Jeha S,Pui CH,Relling MV

    更新日期:2020-01-01 00:00:00

  • Efficacy of surgery combined with postoperative 125 I interstitial brachytherapy for treatment of acinic cell carcinoma of the parotid gland in children and adolescents.

    abstract:BACKGROUND:Acinic cell carcinoma (AciCC) is rare in children; therefore, reaching a consensus on its management is challenging and radiotherapy is limited by concerns about long-term toxicity. The purpose of this study is to analyze the effectiveness and safety of surgery plus postoperative 125 I interstitial brachythe...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.28343

    authors: Li J,Zhang J,Lyu XM,Huang MW,Zheng L,Zhang JG

    更新日期:2020-07-01 00:00:00

  • Safety, efficacy, and pharmacokinetics of intravenous busulfan in children undergoing allogeneic hematopoietic stem cell transplantation.

    abstract:PURPOSE:To determine the safety, efficacy, and PK profile of intravenous busulfan (Bu) in the context of a Bu and cyclophosphamide (IVBuCy) preparative regimen in children undergoing allogeneic hematopoietic stem cell transplantation (HSCT). METHODS:Twenty-four children were enrolled in an open-label, multicenter tria...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章,多中心研究

    doi:10.1002/pbc.22227

    authors: Wall DA,Chan KW,Nieder ML,Hayashi RJ,Yeager AM,Kadota R,Przepiorka D,Mezzi K,Kletzel M,Pediatric Blood, Marrow Transplant Consortium.

    更新日期:2010-02-01 00:00:00

  • Incidence of acute kidney injury among pediatric hematology/oncology patients receiving vancomycin in combination with piperacillin/tazobactam or cefepime.

    abstract::There is mounting evidence that combination of antibiotic therapy with vancomycin and piperacillin/tazobactam (pip/tazo) is associated with acute kidney injury (AKI). To determine whether vancomycin plus pip/tazo is associated with higher rates of AKI compared to vancomycin plus cefepime among pediatric hematology/onc...

    journal_title:Pediatric blood & cancer

    pub_type: 临床试验,杂志文章

    doi:10.1002/pbc.27750

    authors: Quach HT,Esbenshade AJ,Zhao Z,Banerjee R

    更新日期:2019-07-01 00:00:00

  • Physician Perspectives on Palliative Care for Children With Neuroblastoma: An International Context.

    abstract:BACKGROUND:Studies have shown that children with cancer globally lack access to palliative care. Little is known regarding physicians' perceptions of palliative care, treatment access, and self-reported competence in providing palliative care. PROCEDURE:Members of the Global Neuroblastoma Network (online tumor board) ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.25900

    authors: Balkin EM,Thompson D,Colson KE,Lam CG,Matthay KK

    更新日期:2016-05-01 00:00:00

  • Resolution of chronic hypoxemia in pediatric sickle cell patients after treatment with hydroxyurea.

    abstract::Chronic hypoxemia is a common manifestation among patients with sickle cell anemia (SCA) who develop chronic lung disease. We report the beneficial effect of hydroxyurea on chronic hypoxemia in three pediatric patients with SCA and recurrent episodes of acute chest syndrome (ACS). All three patients improved rapidly a...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.21480

    authors: Singh SA,Koumbourlis AC,Aygun B

    更新日期:2008-06-01 00:00:00

  • Validation of the school age self-administered pediatric bleeding questionnaire (Self-PBQ) in children aged 8-12 years.

    abstract:BACKGROUND:In the pediatric population, pathologic bleeding is often challenging to identify. The pediatric bleeding questionnaire (PBQ) was developed as a screening tool for von Willebrand disease (VWD) but was designed to be self-completed by children above 12 years of age. The study objective was to determine whethe...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.27709

    authors: Bui J,Martyres D,James PD,Grabell J,Wu J,Steele M,Silva M,Rand ML,Blanchette VS,Barrowman N,Klaassen RJ

    更新日期:2019-06-01 00:00:00

  • Treatment of retinoblastoma in Sub-Saharan Africa: Experience of the paediatric oncology unit at Gabriel Toure Teaching Hospital and the Institute of African Tropical Ophthalmology, Bamako, Mali.

    abstract:BACKGROUND:Retinoblastoma (Rb) is the most common intraocular primary malignancy in children. In industrialised countries, the cure rate is about 95%. We present the results of a prospective study on the management of Rb in the paediatric oncology unit of Gabriel Touré Teaching Hospital and African Institute of Tropica...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.27101

    authors: Traoré F,Sylla F,Togo B,Kamaté B,Diabaté K,Diakité AA,Diall H,Dicko F,Sylla M,Bey P,Desjardins L,Gagnepain-Lacheteau A,Coze C,Harif M,Doz F

    更新日期:2018-08-01 00:00:00

  • Patient and health service factors associated with delays in cancer treatment for children without social security in Mexico.

    abstract:BACKGROUND:The objective was to investigate factors associated with patient-related timing (PRT) to seek healthcare and health service-related timing (HSRT) to diagnose cancer and provide treatment to children without social security in Mexico. PROCEDURE:A cross-sectional survey was conducted in 13 Ministry of Health ...

    journal_title:Pediatric blood & cancer

    pub_type: 杂志文章

    doi:10.1002/pbc.28331

    authors: Zapata-Tarrés M,González-Domínguez E,Doubova SV,Menendez-Auld N,Cruz-Medina CS,Gonzalez-Ramella RO,Vega-Vega L,Guevara-Espejel C,Juárez-Villegas L,Pérez-Cuevas R

    更新日期:2020-09-01 00:00:00