-
1
-
-
0037675216
-
Spinal muscular atrophies
-
Butterworth Heinemann, Philadelphia, PA, H.R. Jones, D.C. De Vivo, B.T. Darras (Eds.)
-
Crawford T.O. Spinal muscular atrophies. Neuromuscular disorders of infancy, childhood and adolescence: a clinician's approach 2003, 145-166. Butterworth Heinemann, Philadelphia, PA. H.R. Jones, D.C. De Vivo, B.T. Darras (Eds.).
-
(2003)
Neuromuscular disorders of infancy, childhood and adolescence: a clinician's approach
, pp. 145-166
-
-
Crawford, T.O.1
-
2
-
-
0034219353
-
Muscular dystrophy
-
Roland E.H. Muscular dystrophy. Pediatr Rev 2000, 21:233-237.
-
(2000)
Pediatr Rev
, vol.21
, pp. 233-237
-
-
Roland, E.H.1
-
3
-
-
0037390369
-
Threats to " informed" advance directives for the severely physically challenged?
-
Bach J.R. Threats to " informed" advance directives for the severely physically challenged?. Arch Phys Med Rehabil 2003, 84:S23-S28.
-
(2003)
Arch Phys Med Rehabil
, vol.84
-
-
Bach, J.R.1
-
4
-
-
0036726040
-
End-of-life issues in genetic disorders: summary of workshop held at the National Institutes of Health on September 26, 2001
-
Knebel A.R., Hudgings C. End-of-life issues in genetic disorders: summary of workshop held at the National Institutes of Health on September 26, 2001. Genet Med 2002, 4:373-378.
-
(2002)
Genet Med
, vol.4
, pp. 373-378
-
-
Knebel, A.R.1
Hudgings, C.2
-
5
-
-
0033016576
-
The role of palliative care in advance muscular dystrophy and spinal muscular atrophy
-
Parker D., Maddocks I., Stern L.M. The role of palliative care in advance muscular dystrophy and spinal muscular atrophy. J Paediatr Child Health 1999, 35:245-250.
-
(1999)
J Paediatr Child Health
, vol.35
, pp. 245-250
-
-
Parker, D.1
Maddocks, I.2
Stern, L.M.3
-
6
-
-
33749264062
-
My son is still walking": Stages of receptivity to discussions of advance care planning among parents of sons with Duchenne Muscular Dystrophy
-
Erby L.H., Rushton C.H., Geller G. My son is still walking": Stages of receptivity to discussions of advance care planning among parents of sons with Duchenne Muscular Dystrophy. Semin Pediatr Neurol 2006, 13:132-140.
-
(2006)
Semin Pediatr Neurol
, vol.13
, pp. 132-140
-
-
Erby, L.H.1
Rushton, C.H.2
Geller, G.3
-
7
-
-
27244443700
-
Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities
-
Graham R.J., Robinson W.M. Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr 2005, 26:361-365.
-
(2005)
J Dev Behav Pediatr
, vol.26
, pp. 361-365
-
-
Graham, R.J.1
Robinson, W.M.2
-
8
-
-
23044500738
-
Developing an Interdisciplinary Palliative Care Plan for the Patient With Muscular Dystrophy
-
Weidner N.J. Developing an Interdisciplinary Palliative Care Plan for the Patient With Muscular Dystrophy. Pediatr Ann 2005, 34:546-554.
-
(2005)
Pediatr Ann
, vol.34
, pp. 546-554
-
-
Weidner, N.J.1
-
9
-
-
40349102014
-
Paediatric palliative care: challenges and emerging ideas
-
Liben S., Papadatou D., Wolfe J. Paediatric palliative care: challenges and emerging ideas. Lancet 2008, 371:852-864.
-
(2008)
Lancet
, vol.371
, pp. 852-864
-
-
Liben, S.1
Papadatou, D.2
Wolfe, J.3
-
10
-
-
0012770883
-
-
IOM Committee, National Academies Press, Washington, D.C
-
Field M.J., Behrman R. When children die: improving palliative and end-of-life care for children and their families 2003, IOM Committee, National Academies Press, Washington, D.C.
-
(2003)
When children die: improving palliative and end-of-life care for children and their families
-
-
Field, M.J.1
Behrman, R.2
-
11
-
-
0034241612
-
Palliative Care for Children
-
American Academy of Pediatrics (AAP)
-
American Academy of Pediatrics (AAP) Palliative Care for Children. Pediatrics 2000, 106:351-357.
-
(2000)
Pediatrics
, vol.106
, pp. 351-357
-
-
-
12
-
-
78649905615
-
-
Last Acts Palliative Care Task Force. Precepts of palliative care for children/adolescents and their families
-
Last Acts Palliative Care Task Force. Precepts of palliative care for children/adolescents and their families http://www.lastacts.org/files/publications/pedprecept.pdf.
-
-
-
-
13
-
-
16244396002
-
Integrating palliative and curative approaches in the care of children with life-threatening illnesses
-
Mary Ann Liebert, Inc, United States, M.Z. Solomon, A.L. Romer, K.S. Heller, D.E. Weissman (Eds.)
-
Goldman A. Integrating palliative and curative approaches in the care of children with life-threatening illnesses. Innovations in End-of-Life Care 2001, 171-181. Mary Ann Liebert, Inc, United States. M.Z. Solomon, A.L. Romer, K.S. Heller, D.E. Weissman (Eds.).
-
(2001)
Innovations in End-of-Life Care
, pp. 171-181
-
-
Goldman, A.1
-
14
-
-
85007671036
-
Recent advances in palliative care. Importance of palliative care for children is being increasingly recognized
-
Goldman A. Recent advances in palliative care. Importance of palliative care for children is being increasingly recognized. BMJ 2001, 322:234.
-
(2001)
BMJ
, vol.322
, pp. 234
-
-
Goldman, A.1
-
15
-
-
28644439553
-
Food, toys, and love: Pediatric palliative care
-
Sourkes B., Frankel L., Brown M., Contro N., Benitz W., Case C., et al. Food, toys, and love: Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care 2005, 35:350-386.
-
(2005)
Curr Probl Pediatr Adolesc Health Care
, vol.35
, pp. 350-386
-
-
Sourkes, B.1
Frankel, L.2
Brown, M.3
Contro, N.4
Benitz, W.5
Case, C.6
-
16
-
-
78649903159
-
-
Association of Children with Life-Threatening or Terminal Conditions and their Families (ACT), Royal College of Paediatrics and Child Health (RCPCH). A guide to the development of children's palliative care services, Bristol, UK
-
Association of Children with Life-Threatening or Terminal Conditions and their Families (ACT), Royal College of Paediatrics and Child Health (RCPCH). A guide to the development of children's palliative care services, Bristol, UK 2003.
-
(2003)
-
-
-
17
-
-
34548167361
-
Participants of the International Conference on SMA Standard of Care. Consensus statement for standard of care in spinal muscular atrophy
-
Wang C.H., Finkel R.S., Bertini E.S., Schroth M., Simonds A., Wong B., et al. Participants of the International Conference on SMA Standard of Care. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol 2007, 22:1027-1049.
-
(2007)
J Child Neurol
, vol.22
, pp. 1027-1049
-
-
Wang, C.H.1
Finkel, R.S.2
Bertini, E.S.3
Schroth, M.4
Simonds, A.5
Wong, B.6
-
18
-
-
72149108443
-
Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management
-
DMD Care Considerations Working Group, [Epub 2009 Nov 27]
-
Bushby K., Finkel R., Birnkrant D.J., Case L.E., Clemens P.R., Cripe L., et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol 2010, 9:77-93. DMD Care Considerations Working Group, [Epub 2009 Nov 27].
-
(2010)
Lancet Neurol
, vol.9
, pp. 77-93
-
-
Bushby, K.1
Finkel, R.2
Birnkrant, D.J.3
Case, L.E.4
Clemens, P.R.5
Cripe, L.6
-
19
-
-
76549130473
-
Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care
-
DMD Care Considerations Working Group, [Epub 2009 Nov 27]
-
Bushby K., Finkel R., Birnkrant D.J., Case L.E., Clemens P.R., Cripe L., et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol 2010, 9:177-189. DMD Care Considerations Working Group, [Epub 2009 Nov 27].
-
(2010)
Lancet Neurol
, vol.9
, pp. 177-189
-
-
Bushby, K.1
Finkel, R.2
Birnkrant, D.J.3
Case, L.E.4
Clemens, P.R.5
Cripe, L.6
-
20
-
-
78649903842
-
-
National Hospice and Palliative Care Organization, Alexandria, VA. Standards of Practice for Pediatric Palliative Care and Hospice, April
-
National Hospice and Palliative Care Organization, Alexandria, VA. Standards of Practice for Pediatric Palliative Care and Hospice, April 2009 http://www.nhpco.org/pediatrics.
-
(2009)
-
-
-
21
-
-
78649908041
-
-
National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Second Edition
-
National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Second Edition 2009 http://www.nationalconsensusproject.org/guideline.pdf.
-
(2009)
-
-
-
22
-
-
67650472800
-
Pain management for children with cancer at the end-of-life: Beginning steps toward a standard of care
-
Friebert S. Pain management for children with cancer at the end-of-life: Beginning steps toward a standard of care. Pediatr Blood Cancer 2009, 52:749-750.
-
(2009)
Pediatr Blood Cancer
, vol.52
, pp. 749-750
-
-
Friebert, S.1
-
23
-
-
60549094802
-
WFPICCS Task Force on Ethics. Intercontinental differences in end-of-life attitudes in the pediatric intensive care unit: Results of a worldwide survey
-
Devictor D.J., Tissieres P., Gillis J., Truog R. WFPICCS Task Force on Ethics. Intercontinental differences in end-of-life attitudes in the pediatric intensive care unit: Results of a worldwide survey. Pediatr Crit Care Med 2008, 9:560-566.
-
(2008)
Pediatr Crit Care Med
, vol.9
, pp. 560-566
-
-
Devictor, D.J.1
Tissieres, P.2
Gillis, J.3
Truog, R.4
-
24
-
-
34249734220
-
IMPaCCT: Standards for Paediatric Palliative Care in Europe
-
Steering committee of EPAC.Task Force on Palliative Care for Children Adolescents
-
Steering committee of EPAC.Task Force on Palliative Care for Children Adolescents IMPaCCT: Standards for Paediatric Palliative Care in Europe. Eur J Palliat Care 2007, 14:109-114.
-
(2007)
Eur J Palliat Care
, vol.14
, pp. 109-114
-
-
-
25
-
-
77649252123
-
Adolescents with life-threatening illnesses
-
[Epub 2010 Jan 22]
-
Knapp C., Quinn G.P., Murphy D., Brown R., Madden V. Adolescents with life-threatening illnesses. Am J Hosp Palliat Care 2010, 27:139-144. [Epub 2010 Jan 22].
-
(2010)
Am J Hosp Palliat Care
, vol.27
, pp. 139-144
-
-
Knapp, C.1
Quinn, G.P.2
Murphy, D.3
Brown, R.4
Madden, V.5
-
26
-
-
31744437464
-
The other side of caring: Caregiver suffering
-
The Johns Hopkins University Press, Baltimore, MD, B.S. Carter, M. Levetown (Eds.)
-
Rushton C.H. The other side of caring: Caregiver suffering. Palliative care for infants, children, and adolescents. A practical handbook 2004, 220-243. The Johns Hopkins University Press, Baltimore, MD. B.S. Carter, M. Levetown (Eds.).
-
(2004)
Palliative care for infants, children, and adolescents. A practical handbook
, pp. 220-243
-
-
Rushton, C.H.1
-
27
-
-
0035110542
-
Advance care planning: Pitfalls, progress, promise
-
Prendergast T. Advance care planning: Pitfalls, progress, promise. Crit Care Med 2001, 29:N34-N39.
-
(2001)
Crit Care Med
, vol.29
-
-
Prendergast, T.1
-
28
-
-
33745317984
-
The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life
-
Hays R.M., Valentine J., Haynes G., Geyer J.R., Villareale N., McKinstry B., et al. The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life. J Palliat Med 2006, 9:716-728.
-
(2006)
J Palliat Med
, vol.9
, pp. 716-728
-
-
Hays, R.M.1
Valentine, J.2
Haynes, G.3
Geyer, J.R.4
Villareale, N.5
McKinstry, B.6
-
29
-
-
0037532102
-
-
Report of the Joint Working Party on Palliative Care for Adolescents and Young Adults United Kingdom, London, Bristol and Edinburgh
-
Thornes R. Palliative Care for Young People Aged 13-24 2001, Report of the Joint Working Party on Palliative Care for Adolescents and Young Adults United Kingdom, London, Bristol and Edinburgh.
-
(2001)
Palliative Care for Young People Aged 13-24
-
-
Thornes, R.1
-
30
-
-
78649906162
-
Management of chronic pain in children
-
American Academy of Pediatrics Textbook of Pediatric Care, T. Mcinerny, H. Adam, D. Campbell, D. Kamat (Eds.)
-
Kost-Byerly S. Management of chronic pain in children. Elk Grove Village IL 2008, American Academy of Pediatrics Textbook of Pediatric Care. T. Mcinerny, H. Adam, D. Campbell, D. Kamat (Eds.).
-
(2008)
Elk Grove Village IL
-
-
Kost-Byerly, S.1
-
31
-
-
0030987718
-
The development and validation of the Children's Hope Scale
-
Snyder C.R., Hoza B., Pelham W.E., Rapoff M., Ware L., Danovsky M., et al. The development and validation of the Children's Hope Scale. J Pediatr Psychol 1997, 22:399-421.
-
(1997)
J Pediatr Psychol
, vol.22
, pp. 399-421
-
-
Snyder, C.R.1
Hoza, B.2
Pelham, W.E.3
Rapoff, M.4
Ware, L.5
Danovsky, M.6
-
32
-
-
67650087773
-
Until the last breath: exploring the concept of hope for parents and health care professionals during a child's serious illness
-
Reder E.A., Serwint J.R. Until the last breath: exploring the concept of hope for parents and health care professionals during a child's serious illness. Arch Pediatr Adolesc Med 2009, 163:653-657.
-
(2009)
Arch Pediatr Adolesc Med
, vol.163
, pp. 653-657
-
-
Reder, E.A.1
Serwint, J.R.2
-
33
-
-
0035915341
-
The inner life of physicians and care of the seriously ill
-
Meier D.E., Back A.L., Morrison R.S. The inner life of physicians and care of the seriously ill. JAMA 2001, 286:3007-3014.
-
(2001)
JAMA
, vol.286
, pp. 3007-3014
-
-
Meier, D.E.1
Back, A.L.2
Morrison, R.S.3
-
34
-
-
33846451769
-
Nurse-physician perspectives on the care of dying patients in intensive care units: collaboration, moral distress, and ethical climate
-
Hamric A.B., Blackhall L.J. Nurse-physician perspectives on the care of dying patients in intensive care units: collaboration, moral distress, and ethical climate. Crit Care Med 2007, 35:422-429.
-
(2007)
Crit Care Med
, vol.35
, pp. 422-429
-
-
Hamric, A.B.1
Blackhall, L.J.2
-
35
-
-
33747875141
-
Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering
-
Rushton C., Reder E., Hall B., Comello K., Sellers D., Hutton N. Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering. J Palliat Med 2006, 9:922-933.
-
(2006)
J Palliat Med
, vol.9
, pp. 922-933
-
-
Rushton, C.1
Reder, E.2
Hall, B.3
Comello, K.4
Sellers, D.5
Hutton, N.6
-
36
-
-
0003576018
-
-
McGraw-Hill, New York NY
-
Jonsen A.R., Siegler M., Winslade W.F. Clinical Ethics: A practical Approach to Ethical Decisions in Clinical Medicine, 5th ed 2002, McGraw-Hill, New York NY.
-
(2002)
Clinical Ethics: A practical Approach to Ethical Decisions in Clinical Medicine, 5th ed
-
-
Jonsen, A.R.1
Siegler, M.2
Winslade, W.F.3
|