Health-related quality of life and enrollment in Phase 1 trials in children with incurable cancer

Barrera, Maru; D’Agostino, Norma Mammone; Gammon, Janet; Spencer, Lynlee; Baruchel, Sylvain

doi:10.1017/s1478951505050315

Cited by 49 publications

(65 citation statements)

References 14 publications

(7 reference statements)

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“…6,[11][12][13][14][15] For both parents and health care professionals, desirability scores were highly influenced by the opinions of the physician/parent and child. These results are congruent with a report that described the two highest-scoring factors that parents consider when caring for children with cancer as "recommendations received from health care professionals" and "things my child said about continuing or not continuing treatment."…”

Section: Discussionmentioning

confidence: 99%

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Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Tomlinson¹,

Bartels²,

Gammon³

et al. 2011

Canadian Medical Association Journal

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Interpretation: Compared with health care professionals, parents more strongly favour aggressive treatment in the palliative phase and rank hope as a more important factor for making decisions about treatment. Understanding the differences between parents and health care professionals in the relative desirability of supportive care alone may aid in communication and improve end-of-life care for children with cancer. AbstractSee related commentary by Knapp and Komatz at www.cmaj.ca/lookup

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Section: Discussionmentioning

confidence: 99%

“…5 At this point, the goals of therapy are usually to maximize the child's quality and length of life and to ensure respect for the family's and child's preferences. 6 Given the difficult nature of this decision, it is worthwhile to compare and contrast the perspectives of parents and health care professionals.…”

mentioning

confidence: 99%

Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Tomlinson¹,

Bartels²,

Gammon³

et al. 2011

Canadian Medical Association Journal

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“…From the analysis of the contents of the articles reviewed, four thematic categories emerged: quality of life and the elements of spirituality (8,14,(19)(20) ; alternative and complementary therapies: spirituality as a therapeutic resource (6,9,13,16,23,25) ; spirituality as a coping strategy (5,7,11,17,18,22,24) and spirituality as an attribute of the existential transformations (10,12,15,21) . Use of alternative therapies for children with cancer (6) Friedman et al…”

Section: Resultsmentioning

confidence: 99%

“…However, the stimulus to maintain hope and spiritual connections can bring benefits to those who make use of internal energies for cure (14) . Some of the strategies used to achieve a positive quality of spiritual life are linked to attitudes of the sick approaching God or a superior being (20) .…”

Section: Discussionmentioning

confidence: 99%

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Spiritual dimension of children and adolescents with cancer: an integrative review

Espinha¹,

Lima

2012

Acta paul. enferm.

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Objective: To review scientific literature relating to the spiritual dimension of children and adolescents with cancer. Methods: We conducted an integrative literature review in the LILACS, SciELO, PsycINFO and MEDLINE databases in the period between 1990 to 2011. Results: Twenty-one studies were analyzed and grouped into thematic categories: quality of life and elements of spirituality; alternative and complementary therapies: spirituality as a therapeutic resource; spirituality as a coping strategy and spirituality as an attribute of existential transformations. It was found that spirituality is present at different stages of the disease experience and that its forms of expression may vary, according to age and cognitive development. Conclusion: There is a scarcity of specific scales for this age range and a need for scientific production relating to the spiritual dimension of children and adolescents with cancer. Descriptors: Neoplasms; Children; Adolescents; SpiritualityKeywords: Neoplasms; Child; Adolescent; Spirituality reSumo Objetivo: Analisar a produção científica relativa à dimensão espiritual de crianças e adolescentes com câncer. Métodos Realizou-se uma revisão integrativa da literatura nas bases de dados LILACS, SciELO, PsycINFO e MEDLINE no período entre 1990 a 2011. Resultados: Vinte e um estudos foram analisados e agrupados nas categorias temáticas: qualidade de vida e os elementos da espiritualidade; terapias alternativas e complementares: a espiritualidade como recurso terapêutico; a espiritualidade como estratégia de enfrentamento e a espiritualidade como atributo das transformações existenciais. Identificou-se que a espiritualidade está presente nas diversas fases da experiência da doença e que suas formas de expressão podem variar, de acordo com a idade e desenvolvimento cognitivo. Conclusão: Observou-se escassez de escalas específicas à faixa etária e necessidade de produção científica relativa à dimensão espiritual de crianças e adolescentes com câncer. Descritores: Neoplasias; Criança; Adolescente; Espiritualidade reSumen Objetivo: Analizar la producción científica relativa a la dimensión espiritual de niños y adolescentes con cáncer. Métodos: Se realizó una revisión integrativa de la literatura en las bases de datos LILACS, SciELO, PsycINFO y MEDLINE en el período comprendido entre 1990 al 2011. Resultados: Fueron analizados veintiún estudios y agrupados en las categorías temáticas: calidad de vida y los elementos de la espiritualidad; terapias alternativas y complementarias: la espiritualidad como recurso terapéutico; la espiritualidad como estrategia de enfrentamiento y la espiritualidad como atributo de las transformaciones existenciales. Se identificó que la espiritualidad está presente en las diversas fases de la experiencia de la enfermedad y que sus formas de expresión pueden variar, de acuerdo con la edad y el desarrollo cognitivo. Conclusión: Se observó escasez de escalas específicas al grupo etáreo y necesidad de producción científica relativa a la dimensión espiritual ...

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Palliative Care of Children With Brain Tumors

Zelcer¹,

Cataudella²,

Cairney³

et al. 2010

Arch Pediatr Adolesc Med

138

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Participants: Twenty-five parents of 17 children who had died of brain tumors. Intervention: Parents participated in 3 semistructured focus group interviews. Main Outcome Measures: Themes identified through thematic analysis of interview transcripts. Results: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. Conclusion: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.

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Health-related quality of life and enrollment in Phase 1 trials in children with incurable cancer

Abstract: Normalcy and control are key end-of-life HRQOL components, and hope for life is a main reason for participating in Phase 1 trials.

Cited by 49 publications

References 14 publications

Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Spiritual dimension of children and adolescents with cancer: an integrative review

Palliative Care of Children With Brain Tumors

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