Understanding of Prognosis Among Parents of Children Who Died of Cancer

Wolfe, Joanne; Klar, Neil; Grier, Holcombe E.; Duncan, Janet; Salem‐Schatz, Susanne; Emanuel, Ezekiel J.; Weeks, Jane C.

doi:10.1001/jama.284.19.2469

Cited by 422 publications

(143 citation statements)

References 26 publications

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“…[11][12][13] This report shows that HC is feasible when applied to children discharged from BMT units, and that it reduces both their discomfort and the cost of assistance.…”

Section: Discussionmentioning

confidence: 75%

Home care for children following haematopoietic stem cell transplantation

Miano

Manfredini

Garaventa

et al. 2003

Bone Marrow Transplant

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Summary:The quality of life of patients who undergo haematopoietic stem cell transplantation (HSCT) is affected by long periods of hospitalisation for the treatment of several complications. On this basis, 28 children who underwent 29 HSCTs were included in the Home Care (HC) programme of the Paediatric Haematology and Oncology Department of the Gaslini Children's Hospital to be discharged earlier. A total of 17 children were assisted for haematologic follow-up and support therapy administration. The remaining children were followed up for graftversus-host disease and/or cytomegalovirus infection. Overall activity consisted of 1232 i.v. therapies, 501 blood tests, 58 red blood cell or platelet transfusions, 107 procedures on Central Venous Catheter. Median duration of the assistance per child was 25 days (range 1-235) for a total of 1598 days. A total of 822 accesses at home replaced 459 and 363 out-patient and in-patient days of hospitalisation. The average cost per patient receiving HC (h4252) was significantly lower (Po0.01) when compared to the average cost per patient admitted to the hospital to undergo the same procedures (h14 693). This report shows that HC is feasible for children following HSCT, that it reduces the discomfort of the patients and their families, and that it reduces costs.

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“…[11][12][13] This report shows that HC is feasible when applied to children discharged from BMT units, and that it reduces both their discomfort and the cost of assistance.…”

Section: Discussionmentioning

confidence: 75%

Home care for children following haematopoietic stem cell transplantation

Miano

Manfredini

Garaventa

et al. 2003

Bone Marrow Transplant

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“…An important contributing factor may be related to the limited training of physicians in the area of communication [17]. Physicians may also wonder whether discussing prognostic information is the right thing to do [18,19,20] and assume that discussing difficult aspects of the illness may not meet the parents’ needs [4,21]. They may also worry that it may upset patients [19,22,23,24,25], or take away hope [24,25,26,27,28,29,30,31].…”

Section: Discussionmentioning

confidence: 99%

“…Patients and families feel better informed at the beginning of the illness, and they experience more uncertainty as the illness progresses [1,2,3,4,5]. In fact, Wolfe et al [4] found fairly high concordance between parents’ and physicians’ beliefs about the likelihood of cure at diagnosis. As the child’s condition deteriorated, however, parents’ understanding and/or acceptance that their child did not have a realistic chance of cure was substantially delayed.…”

Section: Introductionmentioning

confidence: 99%

“…The importance of clear information about the child’s condition is further highlighted by findings suggesting that parental understanding of the child’s condition and prognosis may also play an important role in their end-of-life decision-making process [4]. For example, Wolfe et al [4] found that elements of palliative care were more likely to be integrated into the child’s care when both the physicians and parents recognized earlier on that the child had no realistic chance of cure and that both parents and physicians shared the common goal of lessening the suffering of the child.…”

Section: Introductionmentioning

confidence: 99%

“…For example, Wolfe et al [4] found that elements of palliative care were more likely to be integrated into the child’s care when both the physicians and parents recognized earlier on that the child had no realistic chance of cure and that both parents and physicians shared the common goal of lessening the suffering of the child.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Absorbing Information about a Child’s Incurable Cancer

Lannen¹,

Wolfe

Mack

et al. 2010

Oncology

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Purpose: To assess parents’ ability to absorb information that their child’s cancer was incurable and to identify factors associated with parents’ ability to absorb this information. Patients and Methods: An anonymous mail-in questionnaire study was performed as a population-based investigation in Sweden between August and October of 2001. 449 parents who lost a child to cancer 4–9 years earlier (response rate 80%) completed the survey. 191 (43%) of the bereaved parents were fathers and 251 (56%) were mothers. Results: Sixty percent of parents (n = 258) reported that they were able to absorb the information that their child’s illness was incurable. Parents were better able to absorb this information when the information was given in an appropriate manner (RR 1.6; CI 1.3–2.0), when they shared their problems with others during the child’s illness course (RR 1.4; CI 1.1–1.8) and when they had no history of depression (RR 1.3; CI 1.0–1.8). Parents who reported that they were able to absorb the information were more likely to have expressed their farewells to the child in their desired manner (RR 1.3; CI 1.0–1.5). Conclusions: Parents who received information that their child’s illness was incurable in an appropriate manner are more likely to absorb that information. Whether or not parents are able to absorb the information that their child’s cancer is incurable has implications in terms of preparation for the child’s impending death.

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How Should We Enhance the Process and Purpose of Prognostic Communication in Oncology?

Sisk

Mack

2018

AMA Journal of Ethics

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Understanding of Prognosis Among Parents of Children Who Died of Cancer

Cited by 422 publications

References 26 publications

Home care for children following haematopoietic stem cell transplantation

Home care for children following haematopoietic stem cell transplantation

Absorbing Information about a Child’s Incurable Cancer

How Should We Enhance the Process and Purpose of Prognostic Communication in Oncology?

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