Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: results from a London cohort study and international survey.
Por:
Veldhuijzen van Zanten SE, van Meerwijk CL, Jansen MH, Twisk JW, Anderson AK, Coombes L, Breen M, Hargrave OJ, Hemsley J, Craig F, Cruz-Martínez O, Kaspers GJ, van Vuurden DG, Hargrave DR and SIOPE DIPG Network
Publicada:
1 abr 2016
Ahead of Print:
11 oct 2015
Resumen:
BACKGROUND: More than 90% of patients with diffuse intrinsic pontine glioma (DIPG) will die within 2 years of diagnosis. Patients deteriorate rapidly during the disease course, which severely impairs their quality of life. To date, no specific research on this clinically important subject has been conducted. This study aimed to compile an inventory of symptoms experienced, interventions applied, and current service provision in end-of-life care for DIPG. METHODS: We performed a retrospective cohort study of children with DIPG, aged 0-18 years, who received treatment under the care of 2 London hospitals. Symptoms, interventions, and services applied during the 12 weeks before death were analyzed. In addition, we conducted a global questionnaire-study among health care professionals. RESULTS: In more than 78% of DIPG patients, problems concerning mobility, swallowing, communication, consciousness, and breathing arose during end-stage disease. Supportive drugs were widely prescribed. The use of medical aids was only documented in <15% of patients. Palliative and end-of-life care was mostly based on the health care professional's experience; only 21% of the questionnaire respondents reported to have a disease-specific palliative care guideline available. CONCLUSIONS: This research assessed the current state of palliative and end-of-life care for children with DIPG. Our results show the variability and complexity of symptoms at end-stage disease and the current lack of disease-specific guidelines for this vulnerable group of patients. This first descriptive paper is intended to act as a solid basis for developing an international clinical trial and subsequent guideline to support high-quality palliative and end-of-life care.
Filiaciones:
Veldhuijzen van Zanten SE:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
van Meerwijk CL:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Jansen MH:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Twisk JW:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Anderson AK:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Coombes L:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Breen M:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Hargrave OJ:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Hemsley J:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Craig F:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Cruz-Martínez O:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
Kaspers GJ:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
van Vuurden DG:
Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center Amsterdam, Netherlands (S.E.M.V.v.Z., C.L.L.I.v.M., M.H.A.J., G.J.L.K., D.G.v.V.)
Department of Epidemiology and Biostatistics, VU University Medical Center Amsterdam, Netherlands (J.W.R.T.)
Paediatrics Unit, Royal Marsden NHS Foundation Trust, Sutton, UK (A.-K.A., L.C., M.B.)
Department of Oncology, Great Ormond Street Hospital, London, UK (O.J.H., J.H., F.C., D.R.H.)
Department of Pediatric Oncology, Hospital Sant Joan de Déu, Barcelona, Spain (O.C.)
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