Palliative Care as a Standard of Care in Pediatric Oncology
Open accessAbstract
Systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 to inform development of a palliative care psychosocial standard.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
27 of 84 cited sources checked · 7 supported · 0 flagged · accuracy not yet measured
- Interpretationcitation
Communication regarding planning, rather than actual location of death, may be a more relevant outcome.
“The opportunity to plan location of death is associated with high quality palliative care and may suggest that communication regarding planning rather than actual location of death may be a more relevant outcome.[19,43]”
Quote in the paperNot a substantial claim1 of 2 sources checked- cites [19] source
The Methods > Parental survey section says location of death was collected, but does not discuss planning that location. The Discussion addresses conversations about hastening death and symptom management, not whether communication about location planning is a more relevant palliative-care outcome than actual location of death. Searches for location-of-death planning and palliative-care quality found no passage addressing that comparison. (LLM, conf=0.76)
Experimental — accuracy not yet measured - cites [43] source
- Findingcitation
Parents of children with cancer perceive accurate, clear, and understandable communication as beneficial.
“Interviews with parents of children with cancer reveal that they perceive accurate, clear, and understandable communication as beneficial.[17,31,32]”
Quote in the paperSubstantial claim1 of 3 sources checked - Findingcitation
Families whose primary oncologist clearly explained treatment options during their child's end-of-life care and who involved home-care services were more likely to plan for the child's location of death.
“Relatedly, families whose primary oncologist clearly explained treatment options during their child’s end of life care and who involved home-care services were more likely to plan for child’s location of death.[19]”
Quote in the paperNot a substantial claim1 of 1 sources checked- cites [19] source
The Methods > Parental survey passage says location of death was collected, while the Implications/Conclusions discuss explaining symptom-management options in relation to considerations of hastening death. Neither passage reports whether oncologists’ explanations or home-care services were associated with planning the child’s location of death. Searches for home-care services, planned location of death, and explained treatment options found no such result in our copy; page numbers were unavailable. (LLM, conf=0.74)
Experimental — accuracy not yet measured
- Findingcitation
The opportunity to plan location of death is associated with high-quality palliative care.
“The opportunity to plan location of death is associated with high quality palliative care and may suggest that communication regarding planning rather than actual location of death may be a more relevant outcome.[19,43]”
Quote in the paperNot a substantial claim1 of 2 sources checked- cites [19] source
The Methods (Parental survey; page unavailable) say that location of death was collected, but do not address whether parents had an opportunity to plan it. The Discussion (page unavailable) concerns planning symptom-management options, not an association between planning the location of death and high-quality palliative care. Searches for planned place or location of death and palliative-care quality found no passage making that association. (LLM, conf=0.74)
Experimental — accuracy not yet measured - cites [43] source
- Findingcitation
Perceived cost and lack of sufficient time are the most frequently cited barriers to introducing palliative care concepts.
“Perceived cost[15,44–51] and lack of sufficient time [33,37,47,51–53] are the most frequently cited barriers to introducing palliative care concepts, thus warranting consideration of reimbursement for palliative care conversations and services.”
Quote in the paperSubstantial claim1 of 10 sources checked- cites [15] source
- cites [44] source
The 'Introducing palliative care' guidance (p. 16) identifies lack of communication about illness trajectory as a barrier, but does not identify perceived cost or insufficient time as barriers. The palliative-care discussion (p. 33) also does not say these are the most frequently cited barriers; searches for cost, time, and reimbursement did not establish that claim. (LLM, conf=0.74)
Experimental — accuracy not yet measured - cites [45] source
- cites [46] source
- cites [47] source
- cites [48] source
- cites [49] source
- cites [50] source
- cites [51] source
- cites [33] source
- Interpretationreasoning
Early integration of palliative care as a standard has potential to improve long-term family wellness outcomes.
“implying early integration of palliative care as a standard of care has potential to improve long-term family wellness outcomes.”
Quote in the paperSubstantial claim3 of 4 sources checked- cites [19] source
The Implications/Conclusions section says that explaining symptom-management options may ease parents’ consideration of hastening their child’s death. The Discussion mentions greater integration of palliative strategies into care, but does not assess early integration as a standard of care or long-term family wellness outcomes; searches for those concepts found no supporting passage. No page numbers were provided in our copy. (LLM, conf=0.76)
Experimental — accuracy not yet measured - cites [20] source
The Introduction describes an integrated model of pediatric palliative care, and the Conclusion associates better communication and continuity during the palliative phase with lower long-term parental grief. The study did not test whether making palliative care an early standard of care improves outcomes, and its measured outcome was parental grief rather than family wellness broadly. Page numbers are not available in our copy. (LLM, conf=0.84)
Experimental — accuracy not yet measured - cites [21] source
The Discussion says future research may identify interventions that improve parent and family outcomes after a child’s death from cancer. It does not identify early integration of palliative care as such an intervention or recommend it as a standard of care. The Discussion also notes that evidence on long-term family outcomes is limited; page numbers were not available in our copy. (LLM, conf=0.82)
Experimental — accuracy not yet measured - cites [22] source
- Findingcitation
Bereaved parental anxiety and quality of life scales correlate with level of child anxiety and pain at end of life.
“Bereaved parental anxiety and quality of life scales have correlated with level of child anxiety and pain at end of life,[19–22]”
Quote in the paperSubstantial claim3 of 4 sources checked- cites [19] source
The Methods (Statistical methods; page unavailable) examine whether child pain was associated with parents’ consideration or endorsement of hastening death. The Parental survey section mentions the child’s quality of life, but the passages found do not report parental anxiety or quality-of-life scales, or correlations between those scales and the child’s anxiety or pain. Searches for those measures and correlations found no supporting passage in our copy. (LLM, conf=0.75)
Experimental — accuracy not yet measured - cites [20] source
The Results section (page unavailable) associates the child’s anxiety about the future, anxiety about being alone, and uncontrolled pain with higher long-term parental grief. The Measurement Instruments section identifies the parental outcome as an Inventory of Traumatic Grief score, not parental anxiety or quality-of-life scales; the Discussion also distinguishes uncontrolled pain from pain severity. (LLM, conf=0.87)
Experimental — accuracy not yet measured - cites [21] source
In Results, under “Bereaved Parents of Children with Cancer: sub-group comparisons” (page unavailable), the review reports higher anxiety and poorer quality of life among bereaved parents who perceived their child as anxious. It does not report a corresponding association with the child’s pain, and the child’s anxiety was assessed through parental perception rather than a measured level. (LLM, conf=0.86)
Experimental — accuracy not yet measured - cites [22] source
- Findingcitation
Limited access to established support services or psychosocial professionals is a barrier to palliative care.
“Further barriers include limited access to established support services[43] or psychosocial professionals,[11,52] thus compelling advocacy for improved palliative care education for general health providers.[8,17,54–56]”
Quote in the paperNot a substantial claim1 of 3 sources checked- cites [43] source
- cites [11] source
- cites [52] source
The ‘Staff providing psychosocial support’ section reports limited counselling and psychology staffing at UK paediatric oncology centres; the Discussion also identifies an absence of psychological input in assessment and support. This supports limited access to psychosocial professionals, the part attached to this citation, but the survey does not establish that the shortage is specifically a barrier to palliative care. Page numbers are unavailable in our copy. (LLM, conf=0.84)
Experimental — accuracy not yet measured
- Findingcitation
Adolescent cancer patients and survivors describe a need for honest and respectful communication in addition to psychosocial support.
“Notably, adolescent cancer patients and survivors describe a need for honest and respectful communication in addition to the provision of psychosocial support.[29,30]”
Quote in the paperSubstantial claim1 of 2 sources checked - Findingcitation
Adolescents with cancer described age-appropriate advance care planning as acceptable, useful, and helpful.
“Adolescents with cancer described age-appropriate advance care planning as acceptable, useful, and helpful.[38,39]”
Quote in the paperNot a substantial claim2 of 2 sources checked- cites [38] source
- cites [39] source
The Results and Discussion report that participants generally found the planning document helpful and appropriate for people their age. However, the study included young adults and participants with HIV as well as adolescents with cancer, and it evaluated concepts in an adult document rather than a completed age-appropriate document. The cited paper therefore supports the general finding but not the claim’s narrower population and document description. (LLM, conf=0.88)
Experimental — accuracy not yet measured
- Findingcitation
Bereaved parents' perceptions of clear and compassionate communication are associated with excellent care and improved psychosocial outcomes.
“Cross-sectional surveys with bereaved parents confirm that parent perceptions of clear and compassionate communication are associated with excellent care and improved psychosocial outcomes.[17,33–35]”
Quote in the paperSubstantial claim1 of 4 sources checked- cites [17] source
- cites [33] source
- cites [34] source
The Introduction (page not specified) says parents whose children died of cancer associate excellent care with clear and compassionate communication. The paper does not report an association between perceptions of that communication and improved psychosocial outcomes; its reported outcomes concern parental agreement on care goals and perceptions of the child's suffering. (LLM, conf=0.88)
Experimental — accuracy not yet measured - cites [35] source
- Findingcitation
Bereaved parents' perspectives reveal a need for improved and cohesive care transitions, particularly in the form and feasibility of home care and respite support services knowledgeable on pediatric and adolescent psychosocial and symptom care needs.
“Perspectives of bereaved parents reveal a need for improved and cohesive care transitions, particularly in the form and feasibility of home care and respite support services knowledgeable on pediatric and adolescent psychosocial and symptom care needs.[17,40–42]”
Quote in the paperSubstantial claim1 of 4 sources checked - Findingcitation
Adult cancer patients are more likely to receive end-of-life care consistent with their preferences when they have had the opportunity to discuss their wishes with a clinician.
“A longitudinal, multi-institutional adult cohort study revealed that patients with cancer are more likely to receive end of life care that is consistent with their preferences when they have had the opportunity to discuss their wishes regarding end of life care with a clinician.[36]”
Quote in the paperNot a substantial claim1 of 1 sources checked- cites [36] source
- Findingcitation
Over one-third of 141 bereaved parents retrospectively reported they would have considered hastening their child's death if the child had been in uncontrollable pain.
“Over one-third of 141 bereaved parents retrospectively reported that they would have considered hastening their child’s death had the child been in uncontrollable pain.[19]”
Quote in the paperNot a substantial claim1 of 1 sources checked- cites [19] source
- Findingnone given
Empirical research shows that children and adolescents diagnosed with cancer experience significant symptom and psychosocial suffering.
“Empirical research for children and adolescents diagnosed with cancer reveals significant symptom and psychosocial suffering.”
Quote in the paperSubstantial claim - Findingcitation
Quality of life for pediatric cancer patients and their family members can be enhanced by preventing and alleviating child and family suffering through compassionate and honest communication, symptom alleviation, and psychosocial attentiveness incorporated by quality palliative care services.
“Empirical data have found the quality of life for pediatric cancer patients and their family members can be enhanced through the prevention and alleviation of child and family suffering via the practice of compassionate and honest communication, symptom alleviation, and the psychosocial attentiveness incorporated by quality palliative care services.[5,8]”
Quote in the paperSubstantial claim0 of 2 sources checked - Findingown data
The review identified symptom assessment and intervention, direct patient report, effective communication, and shared decision-making as topics requiring urgent consideration.
“Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making.”
Quote in the paperSubstantial claim - Findingcitation
Family-centered advance care planning increased families' ability to honor their children's wishes.
“Likewise, family-centered advance care planning increased patients’ wishes for families to make appropriate decisions as needed, improved patients’ understanding about end of life options, increased likelihood of limiting futile treatment, and increased family’s ability to honor wishes of their children.[37]”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [37] source
- Findingown data
Data from seven mixed method, seven qualitative, 21 quantitative, and four review method papers plus 32 editorials and two consensus reports support introducing children and adolescents with cancer and their family members to palliative care concepts early in diagnosis and throughout care.
“Review of data from seven mixed method, seven qualitative, 21 quantitative, and four review method papers plus 32 editorials and two consensus reports support that children and adolescents with cancer and their family members should be introduced to palliative care concepts early in the course of the diagnosis and throughout the trajectory of care.”
Quote in the paperSubstantial claim - Findingcitation
Family-centered advance care planning increased the likelihood of limiting futile treatment.
“Likewise, family-centered advance care planning increased patients’ wishes for families to make appropriate decisions as needed, improved patients’ understanding about end of life options, increased likelihood of limiting futile treatment, and increased family’s ability to honor wishes of their children.[37]”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [37] source
- Findingcitation
Pain in children with cancer is reported as significantly distressing for family members to observe.
“a symptom reported as significantly distressing for family members to observe.[18]”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [18] source
- Findingcitation
None of the 147 parents who talked with their child about death regretted having these conversations.
“Recognizing that children are often aware of their imminent death, none of the 147 parents who talked with their child about death regretted having these important conversations.[27]”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [27] source
- Findingcitation
Family-centered advance care planning improved patients' understanding about end-of-life options.
“Likewise, family-centered advance care planning increased patients’ wishes for families to make appropriate decisions as needed, improved patients’ understanding about end of life options, increased likelihood of limiting futile treatment, and increased family’s ability to honor wishes of their children.[37]”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [37] source
- Findingcitation
Parents were more likely to decide against resuscitation for their child with incurable cancer if an end-of-life discussion with their interdisciplinary medical team occurred before emergent situations.
“Parents were more likely to decide against resuscitation for their child with incurable cancer if an end of life discussion with their inter-disciplinary medical team occurred prior to emergent situations,[13]”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [13] source
- Findingown data
Twenty-nine reviewed papers specifically called for early integration of palliative care starting at diagnosis.
“Twenty-nine of the reviewed papers specifically called for early integration of palliative care starting at diagnosis.”
Quote in the paperNot a substantial claim - Findingcitation
Chart reviews of physician-family communication about a child or adolescent's end of life or prognostic issues rarely documented the child or adolescent's presence during these conversations.
“Chart reviews investigating physician–family communication about a child or adolescent’s end of life or prognostic issues rarely documented the child or adolescent’s presence during these important conversations.[12,28]”
Quote in the paperNot a substantial claim0 of 2 sources checked - Findingcitation
Family-centered advance care planning increased patients' wishes for families to make appropriate decisions as needed.
“Likewise, family-centered advance care planning increased patients’ wishes for families to make appropriate decisions as needed, improved patients’ understanding about end of life options, increased likelihood of limiting futile treatment, and increased family’s ability to honor wishes of their children.[37]”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [37] source
- Interpretationreasoning
Standardizing palliative care assessments and interventions in pediatric oncology could improve quality of care across the cancer trajectory for children and adolescents with cancer and their family members.
“Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members.”
Quote in the paperSubstantial claim - Interpretationreasoning
Effective communication among all parties from patient and parent to the comprehensive care team is crucial to capture the child or adolescent's end-of-life preferences, including location of death.
“Effective communication among all parties from the patient and parent to the comprehensive care team (social workers, psychologists, child life specialists, and clinicians) is crucial to successfully capture the child/adolescent’s end of life preferences, including the practicalities of location of death.”
Quote in the paperSubstantial claim - Interpretationreasoning
Ongoing supportive communication is important, particularly as disease progresses.
“These findings underscore the importance of ongoing supportive communication, particularly as disease progresses.”
Quote in the paperSubstantial claim - Study design and conductreasoning
Current evidence for the recommendation is of moderate quality given consistent findings from lower-level evidence studies.
“Current evidence for this recommendation is of moderate quality given consistent findings from lower level evidence studies (Table I).”
Quote in the paperSubstantial claim - Interpretationreasoning
Early integration of palliative care as a standard approach for children and adolescents diagnosed with cancer offers meaningful opportunities to improve symptom control and quality of life for patients and families.
“Early integration of palliative care as a standard approach for children and adolescents diagnosed with cancer carries meaningful opportunities to improve symptom control and quality of life for patients and their families.”
Quote in the paperSubstantial claim
- Classified as probably not a substantial claim. 14
- May combine two claims. 9
Classified as probably not a substantial claim. May combine two claims.
InterpretationcitationCommunication between the medical team and patient and family, ongoing assessment of patient and family needs, developmentally informed interventions, and tangible support during inpatient and home care transitions are target areas where comprehensive care could be improved through a palliative care standard.
“Specifically, communication between the medical team and the patient and family; ongoing assessment of patient and family needs; developmentally informed interventions; and tangible support during times of inpatient and home care transition are target areas in which comprehensive care could be improved through a standard of palliative care.[6,7]”
Quote in the paperSubstantial claim1 of 2 sources checked- cites [6]
Couldn’t be matched to a paper in Crossref, so it can’t be checked.
- cites [7] source
Split into 2 atoms — 0 confirmed, 0 partially supported, 0 disputed, 0 misattributed, 2 unverifiable. Expand the claim to see per-atom verdicts.
Experimental — accuracy not yet measured
May combine two claims.
FindingcitationA systematic review of empirically based end-of-life publications in pediatrics found that of 26 publications, only four (15.4%) included patient-reported outcomes, six (23.1%) included parent-only-reported outcomes, and five (19.2%) included staff-only-reported outcomes.
“A systematic review of empirically based end of life publications in pediatrics found that of 26 publications, only four (15.4%) included patient-reported outcomes, six (23.1%) included parent only-reported outcomes, and five (19.2%) included staff only-reported outcomes.[23]”
Quote in the paperSubstantial claim1 of 1 sources checked- cites [23] source
The review summary (p. 1) reports the stated counts and percentages among 26 eligible publications. Its scope was end-of-life research in pediatric oncology, however, not pediatrics generally as the citing sentence suggests. (LLM, conf=0.88)
Experimental — accuracy not yet measured
May combine two claims.
FindingcitationProvider discomfort with palliative care conversations and misconceptions that palliative care is only beneficial when treatment is no longer effective are barriers.
“Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.[60]”
Quote in the paperSubstantial claim4 of 8 sources checked- cites [2] source
- cites [19] source
The Discussion (page unavailable) says physicians find conversations about hastening death highly challenging, offering limited support for the provider-discomfort part. It does not say providers are uncomfortable with palliative care conversations generally, or that people believe palliative care is beneficial only after treatment stops working. (LLM, conf=0.78)
Experimental — accuracy not yet measured - cites [23] source
- cites [38] source
- cites [57] source
- cites [32] source
The discussion describes parents’ desire for clear information and opportunities to discuss care goals, but does not identify provider discomfort as a barrier. Searches for discomfort with palliative-care conversations and for the belief that palliative care helps only after treatment fails found neither claim in our copy. (LLM, conf=0.72)
Experimental — accuracy not yet measured - cites [58] source
- cites [59] source
Classified as probably not a substantial claim.
InterpretationcitationThe target population for palliative care includes patients and individuals formative in the child's social and relational spheres, such as siblings, parents or guardians, grandparents, or other extended relatives.
“The target population for palliative care includes not only patients but also those individuals identified as formative in the child’s social and relational spheres, whether siblings, parents or guardians, grandparents, or other extended relatives.[15,31,40,52,61]”
Quote in the paperSubstantial claim1 of 5 sources checked- cites [15] source
- cites [31] source
- cites [40] source
- cites [52] source
The Introduction describes psychosocial support for children with cancer and their families, and the Support groups and bereavement support section lists groups for patients, parents, siblings, and grandparents. The paper does not define the target population for palliative care; its findings concern psychosocial support at UK paediatric oncology centres. (LLM, conf=0.86)
Experimental — accuracy not yet measured - cites [61] source
Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.
Study design and conductcitationThe recommendation is overall strong given the risk-benefit ratio, including significant health impact on bereaved family members and positive outcomes with earlier integration of palliative care and end-of-life care.
“This is an overall strong recommendation given risk-benefit ratio including significant health impact on bereaved family members and positive outcomes with earlier integration of palliative care and end of life care.[2,6,51]”
Quote in the paperNot a substantial claim1 of 3 sources checked- cites [2] source
- cites [6] source
The Synthesis of Second Order Findings links a child’s end-of-life care with bereaved parents’ psychosocial outcomes and long-term grief. The Synthesis of Third Order Findings says early integration of palliative services has the potential to improve child and family health, but does not establish the claimed positive outcomes specifically from earlier integration. The paper supports the rationale for the citing authors’ recommendation, though not that stronger outcome claim. (LLM, conf=0.82)
Experimental — accuracy not yet measured - cites [51] source
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Findingown dataThe review screened 209 papers and included 73 papers in the final synthesis.
“A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis.”
Quote in the paperNot a substantial claimMay combine two claims.
FindingcitationPalliative care for pediatric cancer patients and their families varies across settings and resources and has only recently included access to services similar to those offered to adult cancer patients.
“A review of the literature suggests that palliative care for pediatric cancer patients and their families varies across settings and resources and has only recently included access to services similar to those offered to adult cancer patients.[5]”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [5] source
May combine two claims.
FindingcitationThese psychosocial symptoms often increase with disease progression and are often untreated.
“These psychosocial symptoms often increase in the setting of disease progression and are often untreated.[16]”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [16] source
May combine two claims.
FindingcitationChildren and adolescents with cancer may wish to talk about the meaning of being ill, particularly prognosis, and care team involvement in these conversations may be important for individual children and parents.
“Children and adolescents with cancer may wish to talk about the meaning of being ill, particularly prognosis; and care team involvement in these conversations may be important for individual children[2] and parents.[26]”
Quote in the paperSubstantial claim0 of 2 sources checkedProbably not a substantial claim: may not pass S4 (based).
Findingnone givenSymptom burden assessment with subsequent intervention and effective communication are associated with improved psychosocial outcomes for pediatric cancer patients and their families.
“As a minimum, symptom burden assessment with subsequent intervention and effective communication must be prioritized, as these tenets are associated with improved psychosocial outcomes for pediatric cancer patients and their families.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationThe Worldwide Palliative Care Alliance recognizes integrating palliative care as a human right for children even in resource-limited health system settings.
“The Worldwide Palliative Care Alliance recognizes the importance of integrating palliative care as a human right for children even in resource-limited health system settings,[4]”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [4]
Couldn’t be matched to a paper in Crossref, so it can’t be checked.
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductnone givenThe study team included geographically diverse representatives from oncology, palliative care and hospice, psychology, nursing, and social work.
“The study team included geographically diverse representatives from the fields of oncology, palliative care and hospice, psychology, nursing, and social work.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable).
InterpretationcitationA standard of early integration of palliative care for children and adolescents with cancer means whole-person, whole-family support regardless of anticipated disease trajectory.
“A standard of early integration of palliative care for children and adolescents with cancer translates into whole-person, whole-family support regardless of anticipated disease trajectory.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [2] source
Classified as probably not a substantial claim.
PremisecitationThe American Academy of Pediatrics advocates for an integrated, interdisciplinary approach in which palliative care components are offered at diagnosis and continued throughout illness, whether the outcome is cure or death.
“The American Academy of Pediatrics advocates for an integrated, interdisciplinary approach to competent and compassionate care: “in which the components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death.”[3]”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [3] source
Probably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningEarly integration of palliative care as a standard across sites and settings provides an opportunity to address physical domains and the psychological, developmental, and spiritual impact of illness within the patient's family and community.
“The early integration of palliative care as a standard across sites and settings provides meaningful opportunity to care for not only the physical domains impacted by cancer, but to also attend to the full impact of illness on the patient’s psychological, developmental, and spiritual wellness within the social context of each patient’s family and community.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductnone givenTwo medical librarians independently approved the search strategies.
“Two medical librarians independently approved the search strategies.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductreasoningExternal review improved awareness of standard feasibility in resource-limited settings and led to inclusion of 14 additional papers with psychosocial emphasis.
“External review resulted in improved awareness of standard feasibility in resource-limited settings and inclusion of 14 additional papers with psychosocial emphasis.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductnone givenExpert opinion from the SIOP Pediatric Oncology in Developing Countries Palliative Care Working Group provided the reviewer team with additional global perspective.
“Expert opinion from members of the SIOP Pediatric Oncology in Developing Countries Palliative Care Working Group provided the reviewer team with additional global perspective.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductnone givenAn external team of expert pediatric oncologists and child psychologists externally reviewed the recommendation before the final draft.
“An external team of expert pediatric oncologists and child psychologists externally reviewed the recommendation prior to final draft.”
Quote in the paperNot a substantial claim
Cites
GRADE: an emerging consensus on rating quality of evidence and strength of recommendations
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“A longitudinal, multi-institutional adult cohort study revealed that patients with cancer are more likely to receive end of life care that is consistent with their preferences when they have had the opportunity to discuss their wishes regarding end of life care with a clinician.[36] Likewise, family-centered advance c…”
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“[26] Recognizing that children are often aware of their imminent death, none of the 147 parents who talked with their child about death regretted having these important conversations.[27] Chart reviews investigating physician–family communication about a child or adolescent’s end of life or prognostic issues rarely do…”
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“each standard refer to the introduction in this special issue.[9] The literature search for this paper utilized four databases: PubMed, Cochrane, PsycINFO, and SCOPUS (March 1, 1995 to March 1, 2015).”
MethodSelf-citationFamily Perspectives on the Quality of Pediatric Palliative Care
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BackgroundParent and Physician Perspectives on Quality of Care at the End of Life in Children With Cancer
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Self-citationEasing of Suffering in Children With Cancer at the End of Life: Is Care Changing?
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“[6,7] Empirical data have found the quality of life for pediatric cancer patients and their family members can be enhanced through the prevention and alleviation of child and family suffering via the practice of compassionate and honest communication, symptom alleviation, and the psychosocial attentiveness incorporate…”
BackgroundSelf-citationHilden, J. M., Emanuel, E. J., Fairclough, D. L., Link, M. P., Foley, K. M., Clarridge, B. C., Schnipper, L. E., & Mayer, R. J. (2001) · Journal of Clinical Oncology · doi:10.1200/jco.2001.19.1.205 · Cited by 324 · see citing works
Wolfe, J., Orellana, L., Ullrich, C., Cook, E. F., Kang, T. I., Rosenberg, A. R., Geyer, R., Feudtner, C., & Dussel, V. (2015) · Journal of Clinical Oncology · doi:10.1200/jco.2014.59.1222 · Cited by 307 · cited 1× · see citing works
“[23] Additional research is required to solicit and document patient reports of their unique experiences to ensure appropriate interventions and care from primary stakeholders.[24] Information regarding palliative care needs should be sought directly from children and adolescents to honor the patient voice while also…”
BackgroundSelf-citationD'Agostino, N. M., Penney, A., & Zebrack, B. (2011) · Cancer · doi:10.1002/cncr.26043 · Cited by 289 · see citing works
Hinds, P. S., Oakes, L. L., Hicks, J., Powell, B., Srivastava, D. K., Spunt, S. L., Harper, J., Baker, J. N., West, N. K., & Furman, W. L. (2009) · Journal of Clinical Oncology · doi:10.1200/jco.2008.20.0204 · Cited by 286 · cited 2× · see citing works
“[8,17,54–56] Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.”
BackgroundSelf-citationCultural and religious considerations in pediatric palliative care
Wiener, L. S., McConnell, D. G., Latella, L. E., & Ludi, E. K. (2012) · Palliative & Supportive Care · doi:10.1017/s1478951511001027 · Cited by 271 · cited 1× · see citing works
“[8,17,54–56] Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.[60] Early integration of p…”
BackgroundSelf-citationAllowing Adolescents and Young Adults to Plan Their End-of-Life Care
Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., & Pao, M. (2012) · Pediatrics · doi:10.1542/peds.2012-0663 · Cited by 233 · see citing works
Self-citationMack, J. W., & Wolfe, J. (2006) · Current Opinion in Pediatrics · doi:10.1097/01.mop.0000193266.86129.47 · Cited by 226 · cited 4× · see citing works
“This is an overall strong recommendation given riskbenefit ratio including significant health impact on bereaved family members and positive outcomes with earlier integration of palliative care and end of life care.[2,6,51] Youth and their families should be introduced to palliative care concepts to reduce suffering a…”
BackgroundInfluentialSelf-citationFamily-Centered Advance Care Planning for Teens With Cancer
Lyon, M. E., Jacobs, S., Briggs, L., Cheng, Y. I., & Wang, J. (2013) · JAMA Pediatrics · doi:10.1001/jamapediatrics.2013.943 · Cited by 223 · cited 1× · see citing works
“[36] Likewise, family-centered advance care planning increased patients’ wishes for families to make appropriate decisions as needed, improved patients’ understanding about end of life options, increased likelihood of limiting futile treatment, and increased family’s ability to honor wishes of their children.[37] Adol…”
Background(2000) · PubMed · Cited by 216 · see citing works
Adolescent and Young Adult Oncology
Coccia, P. F., Altman, J., Bhatia, S., Borinstein, S. C., Flynn, J., George, S., Goldsby, R., Hayashi, R., Huang, M. S., Johnson, R. H., et al. (2012) · Journal of the National Comprehensive Cancer Network · doi:10.6004/jnccn.2012.0117 · Cited by 211 · see citing works
Looking Beyond Where Children Die: Determinants and Effects of Planning a Child's Location of Death
Dussel, V., Kreicbergs, U., Hilden, J. M., Watterson, J., Moore, C., Turner, B. G., Weeks, J. C., & Wolfe, J. (2009) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2007.12.017 · Cited by 210 · cited 2× · see citing works
“The opportunity to plan location of death is associated with high quality palliative care and may suggest that communication regarding planning rather than actual location of death may be a more relevant outcome.[19,43]”
BackgroundSelf-citationSymptoms in the palliative phase of children with cancer
Theunissen, J. M. J., Hoogerbrugge, P. M., van Achterberg, T., Prins, J. B., Vernooij‐Dassen, M. J. F. J., & van den Ende, C. H. M. (2007) · Pediatric Blood & Cancer · doi:10.1002/pbc.21042 · Cited by 195 · cited 3× · see citing works
“Validated questionnaire studies of bereaved parents and chart reviews of patients suggest that children and adolescents with cancer experience complex psychosocial symptoms during cancer treatment with exponentiation of these symptoms at end of life; to include symptoms of anxiety,[11–13] depression,[11,13,14] distres…”
BackgroundHechler, T., Blankenburg, M., Friedrichsdorf, S., Garske, D., Hübner, B., Menke, A., Wamsler, C., Wolfe, J., & Zernikow, B. (2008) · Klinische Pädiatrie · doi:10.1055/s-2008-1065347 · Cited by 193 · cited 2× · see citing works
“Validated questionnaire studies of bereaved parents and chart reviews of patients suggest that children and adolescents with cancer experience complex psychosocial symptoms during cancer treatment with exponentiation of these symptoms at end of life; to include symptoms of anxiety,[11–13] depression,[11,13,14] distres…”
BackgroundSelf-citationWeaver, M. S., Heinze, K. E., Bell, C. J., Wiener, L., Garee, A. M., Kelly, K. P., Casey, R. L., Watson, A., & Hinds, P. S. (2016) · Palliative Medicine · doi:10.1177/0269216315583446 · Cited by 184 · see citing works
Self-citationSystematic review of psychosocial morbidities among bereaved parents of children with cancer
Rosenberg, A. R., Baker, K. S., Syrjala, K., & Wolfe, J. (2012) · Pediatric Blood & Cancer · doi:10.1002/pbc.23386 · Cited by 160 · see citing works
Self-citationParents' Experiences of Pediatric Palliative Care and the Impact on Long-Term Parental Grief
van der Geest, I. M. M., Darlington, A.-S. E., Streng, I. C., Michiels, E. M. C., Pieters, R., & van den Heuvel-Eibrink, M. M. (2014) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2013.07.007 · Cited by 148 · see citing works
Wiener, L., Ballard, E., Brennan, T., Battles, H., Martinez, P., & Pao, M. (2008) · Journal of Palliative Medicine · doi:10.1089/jpm.2008.0126 · Cited by 148 · cited 1× · see citing works
“[37] Adolescents with cancer described age-appropriate advance care planning as acceptable, useful, and helpful.[38,39] Effective communication among all parties from the patient and parent to the comprehensive care team (social workers, psychologists, child life specialists, and clinicians) is crucial to successfully…”
BackgroundSelf-citationParental Hope for Children With Advanced Cancer
Kamihara, J., Nyborn, J. A., Olcese, M. E., Nickerson, T., & Mack, J. W. (2015) · Pediatrics · doi:10.1542/peds.2014-2855 · Cited by 143 · cited 1× · see citing works
“Children and adolescents with cancer may wish to talk about the meaning of being ill, particularly prognosis; and care team involvement in these conversations may be important for individual children[2] and parents.[26] Recognizing that children are often aware of their imminent death, none of the 147 parents who talk…”
BackgroundPrevalence and Predictors of Parental Grief and Depression after the Death of a Child from Cancer
McCarthy, M. C., Clarke, N. E., Ting, C. L., Conroy, R., Anderson, V. A., & Heath, J. A. (2010) · Journal of Palliative Medicine · doi:10.1089/jpm.2010.0037 · Cited by 142 · see citing works
Communicating About Prognosis: Ethical Responsibilities of Pediatricians and Parents
Mack, J. W., & Joffe, S. (2014) · Pediatrics · doi:10.1542/peds.2013-3608e · Cited by 123 · see citing works
Jones, B. L., Contro, N., & Koch, K. D. (2014) · Pediatrics · doi:10.1542/peds.2013-3608c · Cited by 119 · see citing works
Pediatric Palliative Care in Childhood Cancer Nursing: From Diagnosis to Cure or End of Life
Foster, T. L., Lafond, D. A., Reggio, C., & Hinds, P. S. (2010) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2010.08.003 · Cited by 114 · see citing works
Self-citationZhukovsky, D. S., Herzog, C. E., Kaur, G., Palmer, J. L., & Bruera, E. (2009) · Journal of Palliative Medicine · doi:10.1089/jpm.2008.0152 · Cited by 113 · cited 1× · see citing works
“[27] Chart reviews investigating physician–family communication about a child or adolescent’s end of life or prognostic issues rarely documented the child or adolescent’s presence during these important conversations.[12,28] Notably, adolescent cancer patients and survivors describe a need for honest and respectful co…”
BackgroundUnmet needs among adolescent cancer patients: A pilot study
PALMER, S., MITCHELL, A., THOMPSON, K., & SEXTON, M. (2007) · Palliative and Supportive Care · doi:10.1017/s1478951507070198 · Cited by 113 · cited 1× · see citing works
“[12,28] Notably, adolescent cancer patients and survivors describe a need for honest and respectful communication in addition to the provision of psychosocial support.[29,30] Interviews with parents of children with cancer reveal that they perceive accurate, clear, and understandable communication as beneficial.”
BackgroundKassam, A., Skiadaresis, J., Alexander, S. W., & Wolfe, J. (2015) · Pediatric Blood & Cancer · doi:10.1002/pbc.25530 · Cited by 113 · see citing works
Self-citationHurwitz, C. A., Duncan, J., & Wolfe, J. (2004) · JAMA · doi:10.1001/jama.292.17.2141 · Cited by 109 · see citing works
Self-citationRole of Palliative Care in Adolescent and Young Adult Oncology
Wein, S., Pery, S., & Zer, A. (2010) · Journal of Clinical Oncology · doi:10.1200/jco.2009.22.4543 · Cited by 105 · cited 1× · see citing works
“[8,17,54–56] Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.”
BackgroundPalliative Care of Children With Brain Tumors: A Parental Perspective
Zelcer, S., Cataudella, D., Cairney, A. E. L., & Bannister, S. L. (2010) · Archives of Pediatrics & Adolescent Medicine · doi:10.1001/archpediatrics.2009.284 · Cited by 99 · see citing works
Intensified chemotherapy without SCT in infant ALL: Results from COG P9407 (Cohort 3)
Dreyer, Z. E., Hilden, J. M., Jones, T. L., Devidas, M., Winick, N. J., Willman, C. L., Harvey, R. C., Chen, I., Behm, F. G., Pullen, J., et al. (2014) · Pediatric Blood & Cancer · doi:10.1002/pbc.25322 · Cited by 96 · see citing works
End-of-life experiences in adolescents dying with cancer
Bell, C. J., Skiles, J., Pradhan, K., & Champion, V. L. (2010) · Supportive Care in Cancer · doi:10.1007/s00520-009-0716-1 · Cited by 82 · cited 1× · see citing works
“[27] Chart reviews investigating physician–family communication about a child or adolescent’s end of life or prognostic issues rarely documented the child or adolescent’s presence during these important conversations.[12,28] Notably, adolescent cancer patients and survivors describe a need for honest and respectful co…”
BackgroundSelf-citationvon Lützau, P., Otto, M., Hechler, T., Metzing, S., Wolfe, J., & Zernikow, B. (2012) · Journal of Palliative Care · doi:10.1177/082585971202800406 · Cited by 75 · cited 1× · see citing works
“[15] These psychosocial symptoms often increase in the setting of disease progression and are often untreated.[16] Pain is reported as a prevalent end of life symptom in childrenwith cancer,[8,11,15,17] a symptom reported as significantly distressing for family members to observe.”
BackgroundSelf-citationCaring for children with advanced cancer
Wolfe, J., Friebert, S., & Hilden, J. (2002) · Pediatric Clinics of North America · doi:10.1016/s0031-3955(02)00034-2 · Cited by 69 · cited 1× · see citing works
“This is an overall strong recommendation given riskbenefit ratio including significant health impact on bereaved family members and positive outcomes with earlier integration of palliative care and end of life care.[2,6,51] Youth and their families should be introduced to palliative care concepts to reduce suffering a…”
BackgroundSelf-citationJones, B. L. (2006) · Journal of Palliative Medicine · doi:10.1089/jpm.2006.9.774 · Cited by 59 · cited 2× · see citing works
“[16] Pain is reported as a prevalent end of life symptom in childrenwith cancer,[8,11,15,17] a symptom reported as significantly distressing for family members to observe.”
BackgroundUnderstanding of Prognosis and Goals of Care Among Couples Whose Child Died of Cancer
Edwards, K. E., Neville, B. A., Cook, E. F., Aldridge, S. H., Dussel, V., & Wolfe, J. (2008) · Journal of Clinical Oncology · doi:10.1200/jco.2007.13.4056 · Cited by 52 · see citing works
Self-citationBereaved Parents' Perspectives on Pediatric Palliative Care
Robert, R., Zhukovsky, D. S., Mauricio, R., Gilmore, K., Morrison, S., & Palos, G. R. (2012) · Journal of Social Work in End-of-Life & Palliative Care · doi:10.1080/15524256.2012.732023 · Cited by 51 · cited 2× · see citing works
“The target population for palliative care includes not only patients but also those individuals identified as formative in the child’s social and relational spheres, whether siblings, parents or guardians, grandparents, or other extended relatives.[15,31,40,52,61] Current evidence for this recommendation is of moderat…”
BackgroundConsiderations About Hastening Death Among Parents of Children Who Die of Cancer
Dussel, V. (2010) · Archives of Pediatrics & Adolescent Medicine · doi:10.1001/archpediatrics.2009.295 · Cited by 44 · cited 4× · see citing works
“[8,17,54–56] Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.”
BackgroundInfluentialPatient-reported Outcomes in End-of-Life Research in Pediatric Oncology
Hinds, P. S., Brandon, J., Allen, C., Hijiya, N., Newsome, R., & Kane, J. R. (2007) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsm004 · Cited by 43 · cited 2× · see citing works
“[8,17,54–56] Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.”
BackgroundSelf-citationBousso, R. S., Misko, M. D., Mendes-Castillo, A. M. C., & Rossato, L. M. (2012) · Journal of Family Nursing · doi:10.1177/1074840711427038 · Cited by 42 · cited 1× · see citing works
“The target population for palliative care includes not only patients but also those individuals identified as formative in the child’s social and relational spheres, whether siblings, parents or guardians, grandparents, or other extended relatives.[15,31,40,52,61] Current evidence for this recommendation is of moderat…”
Care of a Child Dying of Cancer: The Role of the Palliative Care Team in Pediatric Oncology
Postovsky, S., & Arush, M. W. B. (2004) · Pediatric Hematology and Oncology · doi:10.1080/08880010490264037 · Cited by 39 · see citing works
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Palliative care in adolescents
George, R., & Hutton, S. (2003) · European Journal of Cancer · doi:10.1016/j.ejca.2003.09.023 · Cited by 34 · see citing works
Quality of care at the end of life in children with cancer
Heath, J. A., Clarke, N. E., McCarthy, M., Donath, S. M., Anderson, V. A., & Wolfe, J. (2009) · Journal of Paediatrics and Child Health · doi:10.1111/j.1440-1754.2009.01590.x · Cited by 33 · see citing works
Self-citationPsychological Experiences of Children with Brain Tumors at End of Life: Parental Perspectives
Cataudella, D. A., & Zelcer, S. (2012) · Journal of Palliative Medicine · doi:10.1089/jpm.2011.0479 · Cited by 32 · cited 3× · see citing works
“Validated questionnaire studies of bereaved parents and chart reviews of patients suggest that children and adolescents with cancer experience complex psychosocial symptoms during cancer treatment with exponentiation of these symptoms at end of life; to include symptoms of anxiety,[11–13] depression,[11,13,14] distres…”
BackgroundBereaved parental evaluation of the quality of a palliative care program in Lebanon
Saad, R., Huijer, H. A., Noureddine, S., Muwakkit, S., Saab, R., & Abboud, M. R. (2011) · Pediatric Blood & Cancer · doi:10.1002/pbc.23082 · Cited by 30 · see citing works
Tomlinson, D., Hendershot, E., Bartels, U., Maloney, A.-M., Armstrong, C., Wrathall, G., & Sung, L. (2011) · Journal of Pediatric Oncology Nursing · doi:10.1177/1043454211418666 · Cited by 24 · cited 1× · see citing works
“The target population for palliative care includes not only patients but also those individuals identified as formative in the child’s social and relational spheres, whether siblings, parents or guardians, grandparents, or other extended relatives.[15,31,40,52,61] Current evidence for this recommendation is of moderat…”
Palliative Care Afterhours: A Review of a Phone Support Service
Bradford, N., Irving, H., Smith, A. C., Pedersen, L.-A., & Herbert, A. (2012) · Journal of Pediatric Oncology Nursing · doi:10.1177/1043454212446023 · Cited by 24 · see citing works
Palliative care and the child with cancer
Collins, J. J. (2002) · Hematology/Oncology Clinics of North America · doi:10.1016/s0889-8588(02)00020-5 · Cited by 24 · see citing works
Survey of psychosocial support provided by UK paediatric oncology centres
Mitchell, W. (2005) · Archives of Disease in Childhood · doi:10.1136/adc.2004.065177 · Cited by 23 · cited 2× · see citing works
“The target population for palliative care includes not only patients but also those individuals identified as formative in the child’s social and relational spheres, whether siblings, parents or guardians, grandparents, or other extended relatives.[15,31,40,52,61] Current evidence for this recommendation is of moderat…”
BackgroundDeveloping the Liverpool Care Pathway for the dying child.
Matthews, K., Gambles, M., Ellershaw, J., Brook, L. A., Williams, M., Hodgson, A., & Barber, M. (2006) · PubMed · Cited by 18 · see citing works
When death appears best for the child with severe malignancy: a nationwide parental follow-up
Hunt, H., Valdimarsdottir, U., Mucci, L., Kreicbergs, U., & Steineck, G. (2006) · Palliative Medicine · doi:10.1177/0269216306069671 · Cited by 17 · see citing works
“The Family Factor” Knowledge Needed in Oncology Research
Hinds, P. S., FEETHAM, S. L., Kelly, K. P., et al. (2011) · Cancer Nursing · doi:10.1097/ncc.0b013e31823b561f · Cited by 14 · see citing works
Self-citationACE Project—Advocating for Clinical Excellence: Creating Change in the Delivery of Palliative Care
Otis‐Green, S., Yang, E., & Lynne, L. (2013) · OMEGA - Journal of Death and Dying · doi:10.2190/om.67.1-2.b · Cited by 12 · see citing works
LETTER TO THE EDITOR. HEMANGIOMAS, HEPATIC INVOLVEMENT, CONGESTIVE FAILURE.
ROBBINS, B. H., & Castle, R. F. (1965) · PubMed · Cited by 11 · see citing works
ElShami, M. (2011) · Journal of Pediatric Hematology/Oncology · doi:10.1097/mph.0b013e3182122035 · Cited by 8 · cited 1× · see citing works
“[8,17,54–56] Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.”
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Wiener, L. S., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015) · Pediatric Blood & Cancer · doi:10.1002/pbc.25675 · Cited by 476 · see citing works
“[16] Although based on a less rigorous literature, moderate evidence was found for assessment of financial issues; [17] addressing behavioral health issues of parents;[18] psychoeducation;[19] social interaction;[20] supportive services for siblings;[21] assessment and monitoring of adherence;[22] early integration of…”
BackgroundSelf-citationLevine, D. R., Mandrell, B. N., Sykes, A. D., Pritchard, M., Gibson, D. V., Symons, H. J., Wendler, D. S., & Baker, J. N. (2017) · JAMA Oncology · doi:10.1001/jamaoncol.2017.0368 · Cited by 211 · see citing works
“A recent systematic review of PC literature in children and adolescents found that very fewstudies includedpatient voiceorpatient-reported outcomes and called for increased direct child andadolescent involvement.(16)Our findingunderscores the importance of pediatric patient inclusion for symptom assessment and confirm…”
BackgroundPediatric palliative care in oncology
Snaman, J., McCarthy, S., Wiener, L., & Wolfe, J. (2020) · Journal of Clinical Oncology · doi:10.1200/jco.18.02331 · Cited by 181 · see citing works
Psychosocial Interventions and therapeutic support as a standard of care in pediatric oncology
Steele, A. C., Mullins, L. L., Mullins, A. J., & Muriel, A. C. (2015) · Pediatric Blood & Cancer · doi:10.1002/pbc.25701 · Cited by 154 · see citing works
Ahluwalia, S. C., Chen, C. I., Raaen, L. B., Motala, A., Walling, A. M., Chamberlin, M. E., O’Hanlon, C. E., Larkin, J., Lorenz, K., Akinniranye, O., et al. (2018) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2018.09.008 · Cited by 130 · see citing works
Scialla, M. A., Canter, K. S., Chen, F. F., Kolb, E. A., Sandler, E. S., Wiener, L. S., & Kazak, A. E. (2017) · Pediatric Blood & Cancer · doi:10.1002/pbc.26869 · Cited by 115 · see citing works
Self-citationSansom‐Daly, U. M., Wakefield, C. E., Patterson, P., Cohn, R. J., Rosenberg, A. R., Wiener, L. S., & Fardell, J. E. (2019) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2019.0084 · Cited by 104 · see citing works
“Best-practice standards of care guiding palliative care, including end-of-life communication, now exist in the pediatric setting.(28,51) Our review suggests that tailored end-of-life conversations involving the AYA should be led by a clinician they have a comfortable working relationship with, and repeated and revisit…”
BackgroundSelf-citationImplementing the psychosocial standards in pediatric cancer: Current staffing and services available
Scialla, M. A., Canter, K. S., Chen, F. F., Kolb, E. A., Sandler, E. S., Wiener, L. S., & Kazak, A. E. (2017) · Pediatric Blood & Cancer · doi:10.1002/pbc.26634 · Cited by 100 · see citing works
Self-citationWeaver, M. S., Rosenberg, A. R., Tager, J. B., Wichman, C., & Wiener, L. S. (2017) · Journal of Palliative Medicine · doi:10.1089/jpm.2017.0405 · Cited by 92 · see citing works
“comprehensive symptom assessments integrating direct patient report, evidence-based communication techniques, and solicitation of preferences to enable shared decision making, regardless of the child’s prognosis.(8) Championed by families and interdisciplinary care teams, the concept of palliative care as a standard o…”
Self-citationPediatric Palliative Care Programs in US Hospitals
Rogers, M. M., Friebert, S. E., Williams, C. S. P., Humphrey, L. H., Thienprayoon, R., & Klick, J. C. (2021) · PEDIATRICS · doi:10.1542/peds.2020-021634 · Cited by 76 · see citing works
Regret and unfinished business in parents bereaved by cancer: A mixed methods study
Lichtenthal, W. G., Roberts, K. E., Catarozoli, C. R., Schofield, E., Holland, J. M., Fogarty, J., Coats, T., Barakat, L. P., Baker, J. N., Brinkman, T. M., et al. (2020) · Palliative Medicine · doi:10.1177/0269216319900301 · Cited by 70 · see citing works
Self-citationWidger, K. A., Sutradhar, R., Rapoport, A., Vadeboncoeur, C. M., Zelcer, S. M., Kassam, A., Nelson, K., Liu, Y., Wolfe, J., Earle, C. C., et al. (2018) · Journal of Clinical Oncology · doi:10.1200/jco.2017.75.6312 · Cited by 69 · see citing works
Self-citationMontgomery, K. E., Vos, K., Raybin, J. L., Ward, J. A., Balian, C., Gilger, E., & Li, Z. (2020) · Journal for Specialists in Pediatric Nursing · doi:10.1111/jspn.12316 · Cited by 60 · see citing works
Pediatric palliative oncology: the state of the science and art of caring for children with cancer
Snaman, J. M., Kaye, E. C., Baker, J. N., & Wolfe, J. (2017) · Current Opinion in Pediatrics · doi:10.1097/mop.0000000000000573 · Cited by 58 · see citing works
Self-citationPediatric palliative care nursing
Akard, T. F., Hendricks‐Ferguson, V. L., & Gilmer, M. J. (2018) · Annals of Palliative Medicine · doi:10.21037/apm.2018.06.01 · Cited by 60 · see citing works
“Thus, healthcare providers are often hesitant to initiate early palliative care discussions with parents due to barriers such as insufficient time, cost, uncertainty of prognosis, perceived medical failure, fear of diminishing patients’ hope, and discomfort to initiate and engage in palliative care discussions (42-44).”
BackgroundChildhood cancer in Latin America: from detection to palliative care and survivorship
Cruz, P. C. G., Córdoba, M. A., Godoy-Casasbuenas, N., Castaño, A., Ribeiro, K. B., Moreno, F., & de Vries, E. (2020) · Cancer Epidemiology · doi:10.1016/j.canep.2020.101837 · Cited by 56 · see citing works
A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning
Lyon, M. E., D’Angelo, L. J., Dallas, R. H., Hinds, P. S., Garvie, P. A., Wilkins, M. L., Garcia, A., Briggs, L. A., Flynn, P. M., RANA, S. R., et al. (2017) · AIDS Care · doi:10.1080/09540121.2017.1308463 · Cited by 53 · see citing works
“Dyads agreeing to limit end of life treatments. conditions as a new standard of care (Tsai, 2008; Weaver et al., 2015), decreasing the taboo associated with pACP (Walter et al., 2013).”
BackgroundSelf-citationModels of Pediatric Palliative Oncology Outpatient Care—Benefits, Challenges, and Opportunities
Brock, K. E., Snaman, J. M., Kaye, E. C., Bower, K. A., Weaver, M. S., Baker, J. N., Wolfe, J., & Ullrich, C. (2019) · Journal of Oncology Practice · doi:10.1200/jop.19.00100 · Cited by 54 · see citing works
Self-citationRosenberg, A. R., & Wolfe, J. (2017) · The Lancet Child & Adolescent Health · doi:10.1016/s2352-4642(17)30014-7 · Cited by 51 · see citing works
Self-citationSzymczak, J. E., Schall, T. E., Hill, D. L., et al. (2018) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2018.01.019 · Cited by 50 · see citing works
Kim, M.-D., dos Santos, M. D., Szylit, R., & Deatrick, J. (2017) · Journal of pediatric nursing · doi:10.1016/j.pedn.2017.05.008 · Cited by 47 · see citing works
“Recent work has called for psychosocial assessment of and intervention for the child and family and for palliative care to become standard in pediatric oncology (Gerhardt et al., 2015; Kearney et al., 2015; Steele, Mullins, Mullins, &Muriel, 2015;Weaver et al., 2015).”
Wiener, L. S., Bedoya, S. Z., Battles, H. B., Sender, L. S., Zabokrtsky, K. B., Donovan, K. A., Thompson, L. M. A., di Ciccone, B. L., Babilonia, M. B., Fasciano, K. M., et al. (2021) · Palliative & Supportive Care · doi:10.1017/s1478951521001462 · Cited by 49 · see citing works
“The provision of palliative care, which includes ACP, is also an evidence-based standard of care in pediatric cancer (Weaver et al., 2015).”
Self-citationCasey, R. T., Hendriks, E., Deal, C., Waguespack, S. G., Wiegering, V., Redlich, A., Akker, S. A., Prasad, R., Faßnacht, M., Clifton-Bligh, R. J., et al. (2024) · Nature Reviews Endocrinology · doi:10.1038/s41574-024-01024-5 · Cited by 58 · see citing works
Self-citationPediatric Palliative Oncology: Bridging Silos of Care Through an Embedded Model
Kaye, E. C., Snaman, J. M., & Baker, J. N. (2017) · Journal of Clinical Oncology · doi:10.1200/jco.2017.73.1356 · Cited by 48 · see citing works
Weaver, M. S., Shostrom, V., Neumann, M. L., Robinson, J. E., & Hinds, P. S. (2021) · Pediatric Blood & Cancer · doi:10.1002/pbc.28921 · Cited by 47 · see citing works
Self-citationMorris, S. E., Dole, O. R., Joselow, M., Duncan, J., Renaud, K., & Branowicki, P. A. (2016) · Journal of Pediatric Health Care · doi:10.1016/j.pedhc.2016.04.013 · Cited by 45 · see citing works
Avery, J., Geist, A., D’Agostino, N. M., Kawaguchi, S., Mahtani, R., Mazzotta, P., Mosher, P. J., al‐Awamer, A., Kassam, A., Zimmermann, C., et al. (2019) · JCO Oncology Practice · doi:10.1200/jop.19.00313 · Cited by 45 · see citing works
Palliative Care in Paediatric Oncology: an Update
Salins, N. S., Hughes, S. P. F., & Preston, N. J. (2022) · Current Oncology Reports · doi:10.1007/s11912-021-01170-3 · Cited by 44 · see citing works
Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer
Montgomery, K. E., Raybin, J. L., Ward, J. A., Balian, C., Gilger, E., Murray, P., & Li, Z. (2019) · Cancer Nursing · doi:10.1097/ncc.0000000000000721 · Cited by 43 · see citing works
“PQ-MSAS 7–12 Responses (n = 198) PQ-MSAS 13–18 Responses (n = 315) Tota Respo (n = 5 Pain 43 (25) 93 (33) 136 (3 Fatigue 51 (30) 88 (31) 139 (3 Nausea 31 (18) 87 (31) 118 (2 Sleeping difficulties 35 (21) 68 (25) 103 (2 Lack of appetite 35 (21) 43 (15) 78 (1 Irritability 52 (19) 52 (1 Diarrhea 43 (15) 43 (1 Feeling sad…”
Supporting Family Caregivers of Adult and Pediatric Persons with Leukemia
Dionne-Odom, J. N., Currie, E. R., Johnston, E. E., & Rosenberg, A. R. (2019) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2019.150954 · Cited by 42 · see citing works
Palliative Care Programs in Children’s Hospitals
Weaver, M. S., Shostrom, V., Kaye, E. C., Keegan, A., & Lindley, L. C. (2022) · PEDIATRICS · doi:10.1542/peds.2022-057872 · Cited by 40 · see citing works
Self-citationKirch, R., Reaman, G. H., Feudtner, C., Wiener, L. S., Schwartz, L. A., Sung, L., & Wolfe, J. (2016) · CA A Cancer Journal for Clinicians · doi:10.3322/caac.21347 · Cited by 38 · see citing works
Self-citationMack, J. W., Currie, E. R., Martello, V., Gittzus, J., Isack, A., Fisher, L., Lindley, L. C., Gilbertson‐White, S., Roeland, E. J., & Bakitas, M. A. (2021) · Journal of the National Comprehensive Cancer Network · doi:10.6004/jnccn.2020.7645 · Cited by 38 · see citing works
Art Therapy as a Psychosocial Support in a Child’s Palliative Care
Councill, T., & Ramsey, K. (2019) · Art Therapy · doi:10.1080/07421656.2019.1564644 · Cited by 33 · see citing works
“Such integrated palliative care has become the standard of care in pediatric oncology (Weaver et al., 2015).”
BackgroundAcceptability of Family-Centered Advanced Care Planning for Adolescents With HIV
Dallas, R. H., Kimmel, A. L., Wilkins, M. L., RANA, S. R., Garcia, A., Cheng, Y. I., Wang, J., & Lyon, M. E. (2016) · PEDIATRICS · doi:10.1542/peds.2016-1854 · Cited by 32 · see citing works
Quality of Life in Adolescents and Young Adults: The Role of Symptom Burden
Steineck, A., Bradford, M. C., O’Daffer, A., Fladeboe, K., O’Donnell, M. B., Scott, S., Yi‐Frazier, J. P., & Rosenberg, A. R. (2022) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2022.05.017 · Cited by 32 · see citing works
Zarnegar‐Lumley, S., Caldwell, K. J., & Rubnitz, J. E. (2022) · Leukemia · doi:10.1038/s41375-022-01619-9 · Cited by 32 · see citing works
“Palliative care Finally, we should emphasize the critical importance of palliative and supportive care to preserve quality of life for children and adolescents with relapsed AML [134].”
BackgroundLyon, M. E., Dallas, R. H., Garvie, P. A., Wilkins, M. L., Garcia, A., Cheng, Y. I., & Wang, J. (2017) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2016-001224 · Cited by 29 · see citing works
Friedel, M., Brichard, B., Fonteyne, C., Renard, M., Misson, J., Vandecruys, E., Tonon, C., Verfaillie, F., Hendrijckx, G., Andersson, N., et al. (2018) · BMC Palliative Care · doi:10.1186/s12904-018-0324-2 · Cited by 28 · see citing works
Kaye, E. C., Snaman, J. M., Johnson, L., Levine, D. R., Powell, B., Love, A., Smith, J., Ehrentraut, J. H., Lyman, J. A., Cunningham, M. J., et al. (2017) · Pediatric oncology · doi:10.1007/978-3-319-61391-8_4 · Cited by 29 · see citing works
McKee, M. N., Palama, B. K., Hall, M., LaBelle, J. L., Bohr, N. L., & Hoehn, K. S. (2022) · Pediatric Critical Care Medicine · doi:10.1097/pcc.0000000000002916 · Cited by 27 · see citing works
“org June 2022 • Volume 23 • Number 6 services could help relieve or even potentially prevent the distress of the recipients as well as their families by providing psychosocial support, symptom management, and the opportunity to discuss their prognosis, goals of care, and difficult decisions they may face (5).”
Backgroundde Arruda-Colli, M. N. F., Sansom‐Daly, U. M., dos Santos, M. A., & Wiener, L. S. (2018) · Clinical Practice in Pediatric Psychology · doi:10.1037/cpp0000254 · Cited by 27 · see citing works
Self-citationKanwar, V. S., Schwartz, K. R., Salifu, N., et al. (2020) · Pediatric Blood & Cancer · doi:10.1002/pbc.28667 · Cited by 27 · see citing works
Pediatric Oncology, Palliative Care and Low- or Middle- Income Countries: A Call for Action
Siddiqui, M. F., Nohra, L., Saleh, M., Thakkar, K., Trivedi, R., Moujally, S. N., Deeb, H., Nicolas, G. N., & Emmanuel, N. (2023) · Global Pediatric Health · doi:10.1177/2333794x231188591 · Cited by 28 · see citing works
Spruit, J. L., Bell, C. J., Toly, V. B., et al. (2018) · Journal of Pediatric Oncology Nursing · doi:10.1177/1043454218764885 · Cited by 26 · see citing works
Self-citationWidger, K. A., Wolfe, J., Friedrichsdorf, S. J., et al. (2018) · Journal of Palliative Medicine · doi:10.1089/jpm.2017.0532 · Cited by 26 · see citing works
Self-citationSedig, L. K., Spruit, J. L., Paul, T. K., Cousino, M. K., Pituch, K., & Hutchinson, R. J. (2019) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/1049909119895496 · Cited by 25 · see citing works
“Results: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences.”
BackgroundBrock, K. E., Allen, K. E., Falk, E. E., Vellozzi-Averhoff, C. M., DeGroote, N. P., Klick, J. C., & Wasilewski‐Masker, K. J. (2020) · Supportive Care in Cancer · doi:10.1007/s00520-020-05671-y · Cited by 25 · see citing works
Ghirotto, L., Busani, E., Salvati, M., Marco, V. D., Caldarelli, V., & Artioli, G. (2018) · Palliative & Supportive Care · doi:10.1017/s1478951518000172 · Cited by 24 · see citing works
“Among them, effective communication (Snaman et al., 2018), and shared decision-making (Badarau et al., 2017; Weaver et al., 2015) are pressing subjects.”
BackgroundEhrlich, B. S., Movsisyan, N., Batmunkh, T., Кумирова, Э. В., Borisevich, M. V., Киргизов, К. И., Graetz, D. E., McNeil, M. J., Yakimkova, T., Vinitsky, A., et al. (2020) · Cancer · doi:10.1002/cncr.33001 · Cited by 25 · see citing works
“Early integration of palliative care is identified by WHO as “an ethical responsibility of health systems” in the management of children with serious illness, regardless of local resource limitations.(1,2) Early integration of palliative care is critical for pediatric oncology patients and has been shown to significan…”
BackgroundAdding Life to Their Years: The Current State of Pediatric Palliative Care in CKD
House, T. R., & Wightman, A. G. (2021) · Kidney360 · doi:10.34067/kid.0000282021 · Cited by 24 · see citing works
“It is now standard of care at many pediatric oncology programs to consult specialty palliative care at time of diagnosis of malignancy and for pediatric oncologists to routinely engage in primary PPC.(67) Similarly, though the development of new therapies has dramatically altered the disease course of cystic fibrosis…”
BackgroundWidger, K. A., Brennenstuhl, S., Duc, J., Tourangeau, A. E., & Rapoport, A. (2019) · BMC Palliative Care · doi:10.1186/s12904-019-0406-9 · Cited by 22 · see citing works
Evaluating palliative opportunities in pediatric patients with leukemia and lymphoma
Labudde, E. J., DeGroote, N. P., Smith, S., Ebelhar, J. S., Allen, K. E., Castellino, S. M., Wasilewski‐Masker, K. J., & Brock, K. E. (2021) · Cancer Medicine · doi:10.1002/cam4.3862 · Cited by 22 · see citing works
Oncology Clinicians' Perspectives on Online Patient Portal Use in Pediatric and Adolescent Cancer
Sisk, B. A., Bereitschaft, C., Enloe, M., Schulz, G. L., Mack, J. W., & DuBois, J. M. (2023) · JCO Clinical Cancer Informatics · doi:10.1200/cci.23.00124 · Cited by 21 · see citing works
Zhang, A., Bing, L., Mi, Q., Zhou, F., & Wang, J. (2021) · Palliative Medicine Reports · doi:10.1089/pmr.2020.0030 · Cited by 20 · see citing works
Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology
Robert, R. S., Razvi, S., Triche, L. L., Bruera, E. D., & Moody, K. M. (2022) · Children · doi:10.3390/children9020274 · Cited by 20 · see citing works
“Follow-up of bereaved parents is considered an evidence-based standard of care in the field [40].”
BackgroundStrategies for Promoting High-Quality Care and Personal Resilience in Palliative Care
Heinze, K. E., Holtz, H., & Rushton, C. H. (2017) · The AMA Journal of Ethic · doi:10.1001/journalofethics.2017.19.6.pfor2-1706 · Cited by 20 · see citing works
Self-citationDefining and timing of palliative opportunities in children with central nervous system tumors
Massie, A. M., Ebelhar, J. S., Allen, K. E., DeGroote, N. P., Wasilewski‐Masker, K. J., & Brock, K. E. (2021) · Neuro-Oncology Practice · doi:10.1093/nop/npab020 · Cited by 19 · see citing works
Palliative care services in pediatric oncology
Spruit, J. L., & Prince‐Paul, M. (2018) · Annals of Palliative Medicine · doi:10.21037/apm.2018.05.04 · Cited by 18 · see citing works
“(8) in addressing the psychosocial needs of children and adolescents with cancer and their families.”
BackgroundPalliative care utilization in hospitalized children with cancer
Cheng, B. T., & Wangmo, T. (2019) · Pediatric Blood & Cancer · doi:10.1002/pbc.28013 · Cited by 18 · see citing works
Moresco, B. L., & Moore, D. (2021) · Hospital Practice · doi:10.1080/21548331.2021.1964867 · Cited by 18 · see citing works
“These patients benefit from PPC services related to a complex symptom burden, stress of a new diagnosis or relapse, the need to make difficult decisions and plans, and the impact to the families and communities who support these patients [31,32].”
Changing the Culture of Pediatric Palliative Care at the Bedside
Drach, L. L., Cook, M. L., Shields, S. M., et al. (2020) · Journal of Hospice and Palliative Nursing · doi:10.1097/njh.0000000000000707 · Cited by 17 · see citing works
“Defined criteria and timing of when to refer for palliative care are not widely standardized.(9) This lack of standardization may lead to gaps in referrals for those who need this specialized care.”
BackgroundCastor, C., Hallström, I., Landgren, K., & Hansson, H. (2019) · Scandinavian Journal of Caring Sciences · doi:10.1111/scs.12678 · Cited by 17 · see citing works
Psychosocial care for children receiving chimeric antigen receptor (CAR) T‐cell therapy
Steineck, A., Wiener, L. S., Mack, J. W., Shah, N. N., Summers, C. N., & Rosenberg, A. R. (2020) · Pediatric Blood & Cancer · doi:10.1002/pbc.28249 · Cited by 17 · see citing works
Self-citationPaediatric palliative care: a systematic review
Nilsson, S., Öhlén, J., Hessman, E., & Brännström, M. (2019) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2019-001934 · Cited by 17 · see citing works
Rossi, F., Ricci, F., Botti, S., Bertin, D., Breggiè, S., Casalaz, R., Cervo, M., Ciullini, P., Coppo, M., Cornelli, A., et al. (2020) · Pediatric Blood & Cancer · doi:10.1002/pbc.28681 · Cited by 16 · see citing works
Palliative care services for cancer patients in Nepal, a lower-middle-income country
Gautam, D., & Adhikari, S. (2021) · Palliative Care and Social Practice · doi:10.1177/26323524211021105 · Cited by 19 · see citing works
Managing Pain and Discomfort in Children with Cancer
Fuller, C. L., Huang, H. D., & Thienprayoon, R. (2022) · Current Oncology Reports · doi:10.1007/s11912-022-01277-1 · Cited by 17 · see citing works
Bedoya, S. Z., Fry, A., Gordon, M. L., Lyon, M. E., Thompkins, J. D., Fasciano, K. M., Malinowski, P. K., Heath, C. L., Sender, L. S., Zabokrtsky, K. B., et al. (2022) · Frontiers in Psychology · doi:10.3389/fpsyg.2022.871042 · Cited by 16 · see citing works
“The literature has clearly demonstrated the need and desire for ACP intervention in this population (Weaver et al., 2015; Kirch et al., 2016), as well as the barriers to initiating ACP (Wolfe et al.”
BackgroundSelf-citationChildhood Cancer Physical Symptom Burden and Parent Distress: The Role of Parent Rumination
Fisher, R. S., Perez, M. N., Basile, N. L., Pepper, M., Gamwell, K., McNall-Knapp, R., Carter, J. C., Mayes, S., Chaney, J., & Mullins, L. (2021) · Clinical Practice in Pediatric Psychology · doi:10.1037/cpp0000403 · Cited by 19 · see citing works
“Symptomassessmentandinterventionrepre-sentsanimportanttopicwithinpalliativecarefor pediatriconcologytopromotefamilypsychologi-cal well-being and quality of life (Weaver et al., 2015).”
Keefer, P. M., Lehmann, K., Shanley, M., et al. (2017) · Journal of Palliative Medicine · doi:10.1089/jpm.2016.0353 · Cited by 16 · see citing works
Prognosis Communication in Pediatric Oncology: A Systematic Review
Boeriu, E., Borda, A., Miclea, E., Boeriu, A. I., Vulcănescu, D. D., Bagiu, I. C., Horhat, F. G., Kovacs, A. F., Avram, C. R., Diaconu, M. M., et al. (2023) · Children · doi:10.3390/children10060972 · Cited by 17 · see citing works
“observed that parents who had a conversation with their children about the possibility of death did not regret having this conversation and emphasized an honest dialogue and inclusion in decision making, especially for adolescents [38].”
BackgroundEmbracing paediatric palliative care in paediatric oncology from diagnosis onwards
Lacerda, A., Martínez, M. A., Dumont, B., Leiss, U., Κόκκινου, Γ., Scheinemann, K., & Craig, F. (2023) · Pediatric Blood & Cancer · doi:10.1002/pbc.30561 · Cited by 15 · see citing works
Udo, C., Kreicbergs, U. C., Axelsson, B., Björk, O., & Lövgren, M. (2019) · Acta Paediatrica · doi:10.1111/apa.14903 · Cited by 15 · see citing works
Kenney, A. E., Bedoya, S. Z., Gerhardt, C. A., Young‐Saleme, T., & Wiener, L. S. (2021) · Palliative & Supportive Care · doi:10.1017/s1478951521000067 · Cited by 15 · see citing works
“This may be remediated by early integration of palliative care, which could provide opportunities for more discussions and guidance on how caregivers can communicate with their child about death (Wolfe et al., 2000; Mack and Wolfe, 2006; Weaver et al., 2015; Stein et al., 2019).”
BackgroundSelf-citationSisk, B. A., Keenan, M. A., Schulz, G. L., Bakitas, M. A., Currie, E. R., Gilbertson‐White, S., Lindley, L. C., Roeland, E. J., & Mack, J. W. (2021) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2021.0154 · Cited by 14 · see citing works
Palliative care referral criteria and application in pediatric illness care: A scoping review
Carney, K. M. B., Goodrich, G. W., Lao, A., et al. (2023) · Palliative Medicine · doi:10.1177/02692163231163258 · Cited by 14 · see citing works
Weaver, M. S., Neumann, M. L., Lord, B. T., Wiener, L. S., Lee, J., & Hinds, P. S. (2020) · Children · doi:10.3390/children7120265 · Cited by 17 · see citing works
“This represents a missed opportunity for support for these children and families [22], particularly as over one-quarter of respondent parents “were unsure” about their feelings surrounding their “good parent” goals.”
BackgroundSelf-citationPalliative Care Training in Pediatric Nephrology Fellowship: A Cross-Sectional Survey
House, T. R., Wightman, A. G., Smith, J. M., Schwarze, M. L., Bradford, M. C., & Rosenberg, A. R. (2023) · Kidney360 · doi:10.34067/kid.0000000000000233 · Cited by 13 · see citing works
Scialla, M. A., Wiener, L. S., Canter, K. S., Brown, V. S., Buff, K. A., Arasteh, K., Pariseau, E. M., Sandler, E. S., & Kazak, A. E. (2025) · Pediatric Blood & Cancer · doi:10.1002/pbc.31676 · Cited by 13 · see citing works
Self-citationUtilization of integrative medicine differs by age among pediatric oncology patients
Yun, H., Romero, S. A. D., Record, B., Kearney, J. A., Raghunathan, N. J., Sands, S. A., & Mao, J. J. J. (2019) · Pediatric Blood & Cancer · doi:10.1002/pbc.27639 · Cited by 13 · see citing works
Hetherington, K., Wakefield, C. E., Kunalan, K. P. K., Donoghoe, M. W., McGill, B. C., Fardell, J. E., Daly, R., Deyell, R. J., & Ziegler, D. S. (2022) · Cancers · doi:10.3390/cancers14215310 · Cited by 12 · see citing works
Closing the Gap on Pediatric Palliative Oncology Disparities
Currie, E. R., McPeters, S., & Mack, J. W. (2018) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2018.06.010 · Cited by 12 · see citing works
Mahoney, A. B., Akard, T. F., Cowfer, B. A., et al. (2023) · Journal of Palliative Medicine · doi:10.1089/jpm.2023.0091 · Cited by 11 · see citing works
“3 These symptoms are exacerbated by limited opportunities to spend time with peers, physical symptoms from chemotherapy treatments, and changes in appearance.”
Family experiences of oncological palliative and supportive care in children: can we do better?
du Plessis, J., Stones, D. K., & Meiring, M. (2019) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2019.25.9.421 · Cited by 12 · see citing works
Avoine-Blondin, J., Dumont, É., Marquis, M., Duval, M., & Sultan, S. (2022) · BMC Palliative Care · doi:10.1186/s12904-022-01025-z · Cited by 10 · see citing works
Palliative Care in Pediatric Oncology and Hematopoietic Stem Cell Transplantation
Uber, A., Ebelhar, J. S., Lanzel, A. F., Roche, A., Vidal‐Anaya, V., & Brock, K. E. (2022) · Current Oncology Reports · doi:10.1007/s11912-021-01174-z · Cited by 10 · see citing works
Palliative care services in paediatric oncology centres across Europe: A cross-sectional survey
Pedraza, E. C., Raguindin, P. F., Hendriks, M. J., Vokinger, A. K., Clercq, E. D., Rüesch, K., Hjorth, L., von Bueren, A. O., Tinner, E. M., Bergsträßer, E., et al. (2023) · EJC Paediatric Oncology · doi:10.1016/j.ejcped.2023.100125 · Cited by 10 · see citing works
Self-citationWho is responsible for delivering palliative care to children with cancer?
Rosenberg, A. R., Weaver, M. S., & Wiener, L. S. (2017) · Pediatric Blood & Cancer · doi:10.1002/pbc.26889 · Cited by 10 · see citing works
“A recent survey of three national list-serves suggested three additional and important barriers to PPC integration at academic pediatric oncology centers: (1) oncologists believe they provide adequate palliative care themselves, (2) referrals to specialty PPC occur too late in the disease trajectory for patients to ex…”
BackgroundSelf-citationKazak, A. E., Scialla, M. A., Canter, K. S., Sardi-Brown, V. A., Buff, K. A., Arasteh, K., Pariseau, E. M., Sandler, E. S., & Wiener, L. S. (2025) · Pediatric Blood & Cancer · doi:10.1002/pbc.31959 · Cited by 10 · see citing works
“(iv) Supportive Care and Bereavement: Palliative care/end-of-life care (PSS13 [17]); and bereavement care (PSS14 [18]).”
Self-citationIntrathecal Drug Delivery for the Treatment of Cancer-Associated Chronic Pain in Children
Kenfield, M., Zacharias, N. A., & Abd-Elsayed, A. A. (2021) · Neuromodulation Technology at the Neural Interface · doi:10.1111/ner.13535 · Cited by 9 · see citing works
Sedig, L. K., Spruit, J. L., Southwell, J. E., et al. (2021) · Pediatric Blood & Cancer · doi:10.1002/pbc.29391 · Cited by 9 · see citing works
The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care
Brock, K. E., DeGroote, N. P., Roche, A., Lee, A., & Wasilewski, K. (2022) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2022.05.007 · Cited by 10 · see citing works
Clercq, E. D., Grotzer, M. A., Landolt, M. A., von Helversen, B., Flury, M., Rössler, J. K., Kurzo, A., & Streuli, J. C. (2022) · Pediatric Blood & Cancer · doi:10.1002/pbc.29792 · Cited by 9 · see citing works
Sansom‐Daly, U. M., Zhang, M., Evans, H. E., McLoone, J. K., Wiener, L. S., Cohn, R. J., Anazodo, A. C., Patterson, P., & Wakefield, C. E. (2023) · Cancers · doi:10.3390/cancers15072129 · Cited by 10 · see citing works
“Indeed, the early introduction of palliative care and end-of-life concepts has been suggested as a standard of care [9,10].”
BackgroundSelf-citationFeatherston, S., Rozo, B., Buzanga, D. A., Garcia, A. M., Greene, J., Salvador, L. K., & Curry, J. O. (2018) · Patient Experience Journal · doi:10.35680/2372-0247.1294 · Cited by 8 · see citing works
Cuviello, A., Ang, N., Morgan, K. J., Baker, J. N., & Anghelescu, D. L. (2022) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091221138298 · Cited by 8 · see citing works
Lee, A., DeGroote, N. P., & Brock, K. E. (2023) · Journal of Palliative Medicine · doi:10.1089/jpm.2023.0063 · Cited by 8 · see citing works
“13,15,17,18 In an embedded PPC model, PPC clinicians can see patients in tandem with the oncology team.”
Peck, K. R., Harman, J. L., & Anghelescu, D. L. (2018) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2018.0093 · Cited by 8 · see citing works
Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer
Currie, E. R., Johnston, E. E., Bakitas, M. A., Roeland, E. J., Lindley, L. C., Gilbertson‐White, S., & Mack, J. W. (2021) · Journal of Palliative Care · doi:10.1177/08258597211001991 · Cited by 8 · see citing works
“Early palliative care is now a standard of care for patients with advanced cancer and should be provided concurrently with active treatment.(17,18) Providers may also refer caregivers of patients with early or advanced cancer to palliative care services.”
Background
- Authors
- Weaver, M. S., Heinze, K. E., Kelly, K. P., Wiener, L., Casey, R. L., Bell, C. J., Wolfe, J., Garee, A. M., Watson, A., & Hinds, P. S.
- Affiliations
- St. Jude Children's Research Hospital (US)
- Johns Hopkins University (US)
- Children's National (US)
- National Institutes of Health (US)
- Children's Hospital Colorado (US)
- Wayne State University (US)
- Dana-Farber Cancer Institute (US)
- Nationwide Children's Hospital (US)
- Corresponding author
- Weaver, Meaghann S.
- ORCID
- Venue
- Pediatric Blood & Cancer
- Publisher
- Wiley
- Published
- 2015-12
- Volume
- 62
- Issue
- S5
- Pages
- S829-33
- ISSN
- 1545-5009 (ISSN-L)
- 1545-5017
- PMC
- PMC5198905
- OpenAlex
- W2227826674
- Cited by
- 238
- References
- 64
- Citations by year
- 2026: 15 · 2025: 23 · 2024: 13 · 2023: 29 · 2022: 37 · 2021: 30 · 2020: 25 · 2019: 24 · 2018: 17 · 2017: 18 · 2016: 5 · 2015: 2
- FWCI
- 2.02
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Pediatric Blood & Cancer (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Children's National Hospital
- National Institutes of Health (Z99 CA999999)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Keywords
- palliative care, pediatric oncology, adolescent cancer, symptom assessment, patient-reported outcomes, communication, shared decision-making, quality of care, family caregivers
- MeSH terms
- Adolescent, Child, Humans, Medical Oncology, Palliative Care, Pediatrics, Psychology, Hospice Care, Standard of Care, Palliative Medicine
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Claims read under definition version 3 (extract-v3) on 2026-09-28.
Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-09-28.
Cited sources are checked by gpt-6-sol.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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