Publications by authors named "Jennifer W Mack"

168 Publications

Health Literacy and Clinical Outcomes Following Hematopoietic Stem-Cell Transplantation.

JCO Oncol Pract 2022 Jan 21:OP2100049. Epub 2022 Jan 21.

Department of Pediatric Oncology, Center for Outcomes and Policy Research, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, MA.

Purpose: To test associations between health literacy and clinical outcomes in patients undergoing hematopoietic stem-cell transplantation (HSCT).

Methods: English- and Spanish-speaking patients age ≥ 18 years were recruited while admitted for first allogeneic HSCT. Associations between low health literacy (Newest Vital Sign ≤ 3 or Short Test of Functional Health Literacy in Adults ≤ 22) and HSCT outcomes were evaluated.

Results: Twenty-eight percent of 177 participants had low health literacy by Newest Vital Sign. None had low health literacy by Short Test of Functional Health Literacy in Adults. There was no statistically significant difference between patients with low and adequate health literacy in hospital readmissions (60% 54%, = .4), 2-year overall survival (58% 66%, = .19), 2-year cumulative incidence of nonrelapse death (16% 10%, = .35), and acute graft-versus-host disease (53% 44%, = .3). In multivariable analyses, there were no significant associations between health literacy and clinical outcomes.

Conclusion: In this cohort of patients undergoing HSCT, we did not identify a relationship between health literacy and clinical outcomes. Although we did not find statistically significant associations between health literacy and HSCT outcomes, interventions to address health literacy should be considered, given complex outpatient care and evidence for adverse outcomes associated with health literacy in similar diseases.
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http://dx.doi.org/10.1200/OP.21.00049DOI Listing
January 2022

Racial and ethnic disparities in communication study enrollment for young people with cancer: A descriptive analysis of the literature.

Patient Educ Couns 2021 Dec 30. Epub 2021 Dec 30.

Department of Medicine, Washington University School of Medicine, St. Louis, MO, USA.

Objective: We aimed to evaluate the racial and ethnic diversity of study participants in recent pediatric cancer communication literature.

Methods: We systematically searched for communication studies in pediatric oncology published between January 2018 and September 2020, limiting analysis to US studies. We considered race and ethnicity as separate categories in our analysis. Two authors screened studies and abstracted characteristics of race and ethnicity reporting and enrollment.

Results: Of 98 articles included in this analysis, many studies failed to report participants' race (21/98) and ethnicity (40/98). Most studies ascertained race and ethnicity by self-report (51/98); 25 studies did not describe how they ascertained race and ethnicity. White participants were overrepresented in studies relative to the US population (median 80% in studies vs 72% in 2020 US census). Racial and ethnic minorities were underrepresented (Black: 7% vs 14%; Asian: 4% vs 7%; Pacific Islander: 0% vs 0.5%; Native American: 0.5% vs 3%; Hispanic 8% vs 19%).

Conclusion: Communication literature in pediatric oncology underrepresents all racial and ethnic minority populations and is inconsistent in the reporting of race and ethnicity.

Practice Implications: Future work should follow best practices to ensure this literature adequately represents the experiences of all families in pediatric oncology.
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http://dx.doi.org/10.1016/j.pec.2021.12.016DOI Listing
December 2021

Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research.

J Palliat Med 2022 Jan 4. Epub 2022 Jan 4.

Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers. To identify sociodemographic factors associated with caregiver nonparticipation. analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016. Exposures: race, ethnicity, area-, and household-poverty. Primary outcome: survey participation. Secondary outcomes: loss to follow-up at each recruitment step. Thirty-five of 263 eligible caregivers participated in the survey (13.3%). Caregivers of AYAs living in high-poverty zip codes were significantly more likely to have a disconnected or incorrect phone number (odds ratio [OR] 2.12; 95% confidence interval [CI] 1.04-4.58;  = 0.03). Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87;  = 0.01). Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.
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http://dx.doi.org/10.1089/jpm.2021.0433DOI Listing
January 2022

Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer.

J Adolesc Young Adult Oncol 2021 Dec 6. Epub 2021 Dec 6.

Pediatric Oncology and Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.
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http://dx.doi.org/10.1089/jayao.2021.0154DOI Listing
December 2021

Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care.

Am J Hosp Palliat Care 2021 Dec 4:10499091211056039. Epub 2021 Dec 4.

Department of Nursing Science, 8404Children's National Hospital, Washington, DC, USA.

Background: The 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care.

Objective: The purpose of this study was to examine the effect of pediatric concurrent vs standard hospice care on end-of-life care continuity among Medicaid beneficiaries.

Methods: Using national Medicaid data, we conducted a quasi-experimental designed study to estimate the effect of concurrent vs standard hospice care to improve end-of-life care continuity for children. Care continuity (i.e., hospice length of stay, hospice disenrollment, emergency room transition, and inpatient transition) was measured via claims data. Exposures were concurrent hospice vs standard hospice care. Using instrumental variable analysis, the effectiveness of exposures on care continuity was compared.

Results: Concurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice ( = 2.76, < .001) and reduced hospice live discharges ( = -2.80, < .05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room ( = 2.09, < .001) or inpatient care ( = .007, < .05) transitions during hospice enrollment.

Conclusion: Our study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications.
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http://dx.doi.org/10.1177/10499091211056039DOI Listing
December 2021

Early parental knowledge of late effect risks in children with cancer.

Pediatr Blood Cancer 2022 Feb 29;69(2):e29473. Epub 2021 Nov 29.

Harvard Medical School, Boston, Massachusetts, USA.

Background/objectives: Despite the pervasiveness of late effects in childhood cancer survivors, many parents feel inadequately informed about their child's risks. We assessed early parental knowledge of risks of late effects and predictors of increased knowledge.

Design/methods: Parents of children receiving cancer treatment at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were surveyed about their knowledge of their child's likelihood of eight late effects. Individual risk for each late effect (yes/no) was assessed using the Children's Oncology Group's Long-Term Follow-Up Guidelines v5 as a reference. Descriptive statistics were used to summarize knowledge scores; ordinal logistic regression was used to identify predictors of higher knowledge.

Results: Of 96 parent participants, 11 (11.46%) correctly identified all of their child's risks for the eight late effects. Five of eight was the median number of correctly identified late effect risks. Among 21 parents whose children were at risk for ototoxicity, 95% correctly identified this risk. Conversely, parents of at-risk children were less knowledgeable about risks of secondary malignancy (63% correct identification, of N = 94 at risk), cardiac toxicity (61%; N = 71), neurocognitive impairment (56%; N = 63), and infertility (28%; N = 61). Ordinal logistic regression analysis identified no significant differences in parental knowledge of late effect risks by any factors evaluated.

Conclusions: Gaps in parental knowledge of potential late effects of childhood cancer treatment emerge early in a child's care, and parents are more knowledgeable about some late effects, such as ototoxicity, than others, such as infertility. As no child- or parent-specific factors were associated with increased knowledge of late effect risks, interventions must be applied broadly.
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http://dx.doi.org/10.1002/pbc.29473DOI Listing
February 2022

A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care.

J Hosp Palliat Nurs 2022 Feb;24(1):70-77

Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of this study was to evaluate the effectiveness of pediatric concurrent hospice versus standard hospice care to manage constipation. Medicaid data (2011-2013) were analyzed. Children who were younger than 21 years enrolled in hospice care and had a hospice enrollment between January 1, 2011, and December 31, 2013, were included. Instrumental variable analysis was used to test the effectiveness of concurrent versus standard hospice care. Among the 18 152 children, approximately 14% of participants were diagnosed or treated for constipation from a nonhospice provider during hospice enrollment. A higher proportion of children received nonhospice care for constipation in concurrent hospice care, compared with standard hospice (19.5% vs 13.2%), although this was not significant (β = .22, P < .05) after adjusting for covariates. The findings demonstrated that concurrent care was no more effective than standard hospice care in managing pediatric constipation. Hospice and nonhospice providers may be doing a sufficient job ordering bowel regimens before constipation becomes a serious problem for children at end of life.
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http://dx.doi.org/10.1097/NJH.0000000000000810DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8720064PMC
February 2022

Acceptable, hopeful, and useful: development and mixed-method evaluation of an educational tool about reproductive options for people with sickle cell disease or trait.

J Assist Reprod Genet 2021 Nov 22. Epub 2021 Nov 22.

Johns Hopkins University School of Medicine, Baltimore, MD, USA.

Purpose: People with sickle cell disease (SCD) or trait have many reproductive options, some of which decrease the chance of passing SCD to children, including in vitro fertilization with preimplantation genetic testing (IVF + PGT). Few are aware of these options, and educational materials are needed. This study aimed to develop an accessible, non-directive patient education material about reproductive options for those with SCD or trait via a process that incorporated stakeholders from the SCD community.

Methods: Multidisciplinary stakeholders guided development and revision of a novel pamphlet. Researchers applied health literacy scales to measure pamphlet understandability. We interviewed nine patients with SCD and six multidisciplinary clinicians to evaluate the pamphlet. Interviews were recorded, transcribed, and coded by a five-member team who developed a codebook and proposed themes that were revised by all research team members. Feedback was incorporated into a revised pamphlet.

Results: A two-page pamphlet describing reproductive options for people with SCD including IVF + PGT was acceptable to key stakeholders, including people with SCD. Material about this complex topic met health literacy standards, including being written at a 5th grade level. Patients reported feeling hopeful after reviewing the pamphlet, and participants considered the pamphlet useful, clear, and appropriate for distribution in clinics and online.

Conclusions: Though awareness of reproductive options for those with SCD or trait is low, patients and providers find a novel pamphlet about this topic acceptable and useful. Educational materials about complex topics including IVF + PGT can be written at a level understandable to the average American.
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http://dx.doi.org/10.1007/s10815-021-02358-zDOI Listing
November 2021

Parent and Clinician Perspectives on Challenging Parent-Clinician Relationships in Pediatric Oncology.

JAMA Netw Open 2021 11 1;4(11):e2132138. Epub 2021 Nov 1.

Department of Pediatrics, Section of Pediatric Hematology/Oncology, Texas Children's Hospital, Houston.

Importance: Parents of children with cancer value strong therapeutic relationships with oncology clinicians, but not every relationship is positive.

Objective: To identify the prevalence of challenging parent-clinician relationships in pediatric oncology and factors associated with these challenges from parent and clinician perspectives.

Design, Setting, And Participants: This survey was conducted among parents and oncology clinicians of children with cancer within 3 months of diagnosis from November 2015 to July 2019 at Dana-Farber Cancer Institute/Boston Children's Hospital and Texas Children's Hospital. Participants were 400 parents of children with cancer and 80 clinicians (ie, oncology physicians and nurse practitioners). Parents completed surveys about relationships with 1 to 2 primary oncology clinicians; clinicians completed surveys about relationships with parents. Data were analyzed from July 2020 to August 2021.

Exposures: At least 3 previous clinical visits between parent and clinician.

Main Outcomes And Measures: The Relationship Challenges Scale Parent Version and Clinician Version were developed and used to measure threats to the therapeutic alliance. For the Relationship Challenges Scale-Parent version, relationships were considered challenging if a parent responded to any single question in the 2 lowest of 4 possible categories. For the Relationship Challenges Scale-Clinician version, challenges were considered to be present if a clinician reported responses in the 3 lowest of 6 possible response categories to any question.

Results: Among 400 parents, there were 298 [74.5%] women, 25 Asian individuals (6.3%), 28 Black individuals (7.0%), 97 Hispanic individuals (24.3%), 223 White individuals (55.8%), and 10 individuals (2.4%) with other race or ethnicity; race and ethnicity data were missing for 17 (4.3%) individuals. Among 80 clinicians, there were 57 (71.3%) women, 38 attending physicians (47.5%), 32 fellows (40.0%), and 10 nurse practitioners (12.5%). Parents identified 676 unique relationships with clinicians, and clinician reports were available for 338 relationships. Among 338 relationships with paired parent and clinician surveys, 81 relationships (24.0%) were considered challenging by parents, 127 relationships (37.6%) were considered challenging by clinicians, and 33 relationships (9.8%) were considered challenging by parent and clinician. Parents with Asian or other race or ethnicity (odds ratio [OR] vs White parents, 3.62; 95% CI, 1.59-8.26) or who had lower educational attainment (OR for ≤high school vs >high school, 3.03; 95% CI, 1.56-5.90) were more likely to experience relationships as challenging. Clinicians used a variety of strategies more frequently in 127 relationships in which they perceived challenges vs 211 relationships in which they did not perceive challenges, such as holding regular family meetings (22 relationships [17.3%] vs 13 relationships [6.2%]; P = .009) and offering extra time and attention (66 relationships [52%] vs 60 relationships [28.4%]; P < .001). However, these strategies were not used with increased frequency when parents experienced relationships as challenging vs when parents did not experience this.

Conclusions And Relevance: This survey study found that nearly one-quarter of parents of children with cancer reported challenges in the therapeutic relationship with their oncologist and that clinicians used strategies to improve relationships more frequently when they experienced the relationship as challenging. These findings suggest that new strategies are needed to improve experiences for parents and to help clinicians recognize and attend to parents whose experiences are suboptimal.
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http://dx.doi.org/10.1001/jamanetworkopen.2021.32138DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8600390PMC
November 2021

Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala.

JCO Glob Oncol 2021 Sep;7:1529-1536

Dana Farber Cancer Institute/Boston Children's Hospital, Boston, MA.

Purpose: Although > 90% of children with cancer live in low- and middle-income countries, little is known about communication priorities and experiences of families in these settings. We examined communication priorities and the quality of information exchange for Guatemalan caregivers of children with cancer during diagnostic communication.

Methods: A cross-sectional survey including items used in pediatric communication studies from high-income countries and novel questions was verbally administered to 100 caregivers of children with cancer in Guatemala.

Results: Guatemalan caregivers prioritized communication functions of exchanging information (99%), fostering healing relationships (98%), decision making (97%), enabling self-management (96%), and managing uncertainty (94%) over responding to emotions (66%) and cultural awareness (48%). Almost all caregivers wanted as many details as possible about their child's diagnosis and treatment (96%), likelihood of cure (99%), and late effects (97%). Only 67% were always given the information they needed without asking for it, and most caregivers sometimes (56%) or always (18%) had questions they wanted to discuss but did not. Approximately half of the caregivers (54%) correctly identified their child's diagnosis, primary site, disease extent (localized metastatic), proposed treatment length, and treatment intent (curative palliative). Caregivers of children with leukemia were more likely to correctly identify all attributes than those whose children had solid tumors ( < .001).

Conclusion: Caregivers in Guatemala prioritize many of the same aspects of diagnostic communication as parents in the United States, and experience similar challenges. Shared communication values offer potential for adaptation of communication interventions across settings with varying resources and diverse cultures.
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http://dx.doi.org/10.1200/GO.21.00232DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8577673PMC
September 2021

Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review.

Pediatr Blood Cancer 2022 01 18;69(1):e29405. Epub 2021 Oct 18.

Department of Medicine, Washington University School of Medicine, St. Louis, Missouri, USA.

Multiple factors can facilitate or impede the fulfillment of communication functions in pediatric cancer. In this systematic review, we evaluated 109 studies from the preceding 20 years that presented qualitative or quantitative evidence of barriers or facilitators to communication in pediatric cancer. Using a multilevel framework developed in our prior study, we then analyzed and categorized the levels of barriers and facilitators identified in included studies. The vast majority of studies focused on individual-level barriers, rather than team, organization/system, collaborating hospital, community, or policy-level barriers. Future studies should explore the full range of factors that affect communication.
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http://dx.doi.org/10.1002/pbc.29405DOI Listing
January 2022

Thinking ahead: Parents' worries about late effects of childhood cancer treatment.

Pediatr Blood Cancer 2021 Dec 14;68(12):e29335. Epub 2021 Sep 14.

Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.

Background: Many childhood cancersurvivors experience at least one late effect of treatment, and both late effects and persistent cancer-related worry can negatively impact quality of life in survivorship. Little is known about the prevalence or impact of parental worry about late effects early in treatment. This study evaluated parental perceived likelihood, impact, and worry about late effects of childhood cancer.

Procedure: We surveyed 96 parents of pediatric cancer patients at Dana-Farber/Boston Children's Cancer and Blood Disorders Center within a year of diagnosis. Parents were asked about their experiences with late effects communication, general worry about late effects, and specific late effect worries.

Results: Most (96%) parents valued information about late effects, and 93% considered late effects in their treatment decision-making. Yet, 24% could not recall receiving any information about late effects, and only 51% felt well prepared for potential late effects. Though only 20% of parents considered their child at high risk of experiencing late effects, 61% were extremely/very worried about late effects. Those who felt their child was at high risk of experiencing late effects were more likely to worry (OR = 4.7, P = 0.02).

Conclusions: Many parents feel inadequately informed about late effects of cancer treatment, and only one-fifth of parents consider late effects to be likely for their child. However, a majority of parents worry about late effects, including ones they think their child is unlikely to experience. Although some worry is anticipated, disproportionate worry may be mitigated by addressing both educational shortfalls and emotional concerns.
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http://dx.doi.org/10.1002/pbc.29335DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8541904PMC
December 2021

Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer.

JAMA Netw Open 2021 08 2;4(8):e2121888. Epub 2021 Aug 2.

Division of Research, Kaiser Permanente Northern California, Oakland.

Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed.

Objective: To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities.

Design, Setting, And Participants: This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians.

Exposure: Stage IV or recurrent cancer.

Main Outcomes And Measures: Care priorities.

Results: Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare.

Conclusions And Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care.
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http://dx.doi.org/10.1001/jamanetworkopen.2021.21888DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8383130PMC
August 2021

Facilitators Associated With Building and Sustaining Therapeutic Alliance in Advanced Pediatric Cancer.

JAMA Netw Open 2021 08 2;4(8):e2120925. Epub 2021 Aug 2.

Dana-Farber Cancer Institute, Boston, Massachusetts.

Importance: Therapeutic alliance is a core component of patient- and family-centered care, particularly in the setting of advancing cancer. Communication approaches used by pediatric oncologists to foster therapeutic alliance with children with cancer and their families are not well understood.

Objectives: To identify key oncologist-driven facilitators associated with building and sustaining therapeutic alliance in the setting of advancing pediatric cancer and to develop a framework to guide clinical practice and future investigation of therapeutic alliance.

Design, Setting, And Participants: In this qualitative study, serial disease reevaluation discussions that occurred in the clinic, inpatient hospital, or off campus via telephone were recorded among pediatric oncologists, patients with high-risk cancer, and their families across 24 months or until death, whichever occurred first, from 2016 to 2020. This analysis focused on recorded discussions for pediatric patients who experienced progressive disease during the study period. Content analysis was conducted across recorded dialogue to derive inductive codes and identify themes. Participants were patient-parent dyads for whom a primary oncologist projected the patient's survival to be 50% or less, all family members and friends who attended any of their recorded disease reevaluation conversations, and their oncologists and other clinicians who attended the recorded discussions.

Results: A total of 33 patient-parent dyads were enrolled and followed longitudinally. From this cohort, 17 patients experienced disease progression during the study period, most of whom were female (11 [64.7%]) and White (15 [88.2%]) individuals. For these patients, 141 disease reevaluation discussions were audio recorded, comprising 2400 minutes of medical dialogue. Most children (14 [82.4%]) died during the study period. A median of 7 disease reevaluation discussions per patient (range, 1-19) were recorded. Content analysis yielded 28 unique concepts associated with therapeutic alliance fostered by oncologist communication. Ultimately, 7 core themes emerged to support a framework for clinician approaches associated with optimizing therapeutic alliance: human connection, empathy, presence, partnering, inclusivity, humor, and honesty.

Conclusions And Relevance: In this qualitative study, pediatric oncologists used diverse communication approaches associated with building and deepening connections across advancing illness. These findings offer a framework to support clinical and research strategies for strengthening therapeutic alliance among pediatric oncologists, patients, and families.
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http://dx.doi.org/10.1001/jamanetworkopen.2021.20925DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8379655PMC
August 2021

Broaching goals-of-care conversations in advancing pediatric cancer.

Pediatr Blood Cancer 2021 10 6;68(10):e29270. Epub 2021 Aug 6.

Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation conversations between pediatric oncologists, patients, and parents, capturing 141 conversations (∼2400 minutes) for 17 patients with advancing illness across the study period. We conducted content analysis to identify strategies for broaching goals-of-care conversations and found five distinct communication approaches, which were not mutually exclusive. Further research is needed to explore patient and family views on best practices for broaching discussions about goals of care.
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http://dx.doi.org/10.1002/pbc.29270DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8422283PMC
October 2021

Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families.

Br J Cancer 2021 10 2;125(8):1089-1099. Epub 2021 Aug 2.

Dana-Farber Cancer Institute, Boston, MA, USA.

Background: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied.

Methods: We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches.

Results: One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient-parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions.

Conclusions: Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families.
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http://dx.doi.org/10.1038/s41416-021-01512-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8505663PMC
October 2021

Who is coordinating pediatric concurrent hospice care?

J Pain Symptom Manage 2021 Nov 29;62(5):e1-e4. Epub 2021 Jul 29.

Duke University, Durham, North Carolina, USA.

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http://dx.doi.org/10.1016/j.jpainsymman.2021.07.021DOI Listing
November 2021

Clinicians' Perspectives on the Functions of Communication in Pediatric Oncology.

J Palliat Med 2021 09 13;24(10):1545-1549. Epub 2021 Jul 13.

Department of Medicine, Washington University School of Medicine, St. Louis, Missouri, USA.

Parents previously identified eight core functions of communication with clinicians in pediatric oncology. To determine clinicians' views on communication functions in pediatric oncology. In 10 focus groups with 59 clinicians at two academic centers, we asked open-ended questions about communication goals and purposes. Then we presented definitions of eight communication functions previously described by parents and explored clinicians' perspectives. We performed separate focus groups for nurses, nurse practitioners, physicians, and psychosocial professionals. Thematic analysis of focus group transcripts. Clinicians identified six functions in response to open-ended questions. After reviewing the eight functions described by parents, all clinicians agreed with the framework: building relationships, exchanging information, making decisions, enabling family self-management, managing uncertainty, responding to emotions, supporting hope, and providing validation. Pediatric oncology clinicians corroborated this functional communication framework. Clinicians and researchers can utilize this framework to guide care and research in the future.
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http://dx.doi.org/10.1089/jpm.2021.0090DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8568787PMC
September 2021

Patients, caregivers, and clinicians differ in performance status ratings: Implications for pediatric cancer clinical trials.

Cancer 2021 Oct 1;127(19):3664-3670. Epub 2021 Jul 1.

Children's Hospital Los Angeles, Los Angeles, California.

Background: The Lansky Play-Performance Scale (LPPS) is often used to determine a child's performance status for cancer clinical trial eligibility. Differences between clinician and caregiver LPPS ratings and their associations with child-reported functioning have not been evaluated.

Methods: Children aged 7 to 18 years who were receiving cancer treatment and their caregivers were recruited from 9 pediatric cancer centers. Caregivers and clinicians reported LPPS scores, and children completed Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric functioning and symptom measures before treatment (time 1 [T1]) and after treatment (time 2 [T2]). t tests and mixed-linear models were used to assess differences in caregiver and clinician LPPS scores; polyserial correlations quantified associations between PROMIS and LPPS scores.

Results: Of 482 children, 281 had matched caregiver- and clinician-reported LPPS T1/T2 scores. Caregivers rated children significantly worse on the LPPS than clinicians at both T1 (mean, 73.3 vs 87.4; P < .01) and T2 (mean, 67.9 vs 83.1; P < .01). These differences were not related to a child's age (P = .89), diagnosis (P = .17), or sex (P = .64) or to the time point (P = .45). Small to moderate associations existed between caregiver- and clinician-reported LPPS ratings and child-reported PROMIS scores for mobility (caregiver T1/T2 r = 0.51/0.45; P < .01; clinician T1/T2 r = 0.40/0.35; P < .01), fatigue (caregiver T1/T2 r = -0.46/-0.37; P < .01; clinician T1/T2 r = -0.26/-0.27; P < .01), and pain interference (caregiver T1/T2 r = -0.32/-0.30; P < .01; clinician T1/T2 r = -0.17/-0.31; P < .01). Caregivers and clinicians assigned significantly lower LPPS scores at T2 (caregiver Δ = -5.37; P < .01; clinician Δ = -4.20; P < .01), whereas child-reported PROMIS scores were clinically stable.

Conclusions: Significant differences between clinician and caregiver LPPS ratings of child performance were sustained over time; their associations with child reports were predominantly small to moderate. These data suggest that clinician-reported LPPS ratings by themselves are inadequate for determining clinical trial eligibility and should be supplemented by appropriate measures of a child's functional status reflecting the child and caregiver perspectives.
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http://dx.doi.org/10.1002/cncr.33740DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8419065PMC
October 2021

Validity and reliability of the Japanese version of the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire.

Palliat Support Care 2021 Jun 30:1-7. Epub 2021 Jun 30.

Division of Behavioral Science Research, Behavioral Sciences and Survivorship Research Group, Center for Public Health Sciences, National Cancer Center, Tokyo, Japan.

Objective: The purpose of this study was to investigate the validity and reliability of the Japanese version of the Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire (PEACE-J) and to evaluate the association between the PEACE subscales and Japanese patient characteristics.

Methods: A cross-sectional web-based survey was conducted among 412 patients with cancer. This survey assessed medical and demographic factors, such as the PEACE, the Coping Inventory for Stressful Situations (CISS), and the Functional Assessment of Chronic Illness Therapy - Spiritual well-being (FACIT-Sp). The forward-backward translation method was used to develop the PEACE-J. The validity of PEACE-J was evaluated by exploratory and confirmatory factor analysis, and correlation analysis between each subscale of PEACE and FACIT-Sp and CISS. The Cronbach's α and the item-total correlation of each subscale of the PEACE questionnaire were calculated to assess internal consistency reliability.

Results: The factor analysis yielded two subscales corresponding to the original version: Cronbach's α coefficients were 0.84 and 0.86 for the Peaceful Acceptance of Illness subscale and the Struggle with Illness subscale, respectively. The PEACE subscales and the FACIT-Sp subscales and the CISS subscales were moderately associated with each other, including the Peaceful Acceptance to each subscale of FACIT (r = 0.22-0.55, p < 0.01); and the Peaceful Acceptance and the Struggle with Illness to CISS emotion-oriented coping (r = -0.36 and r = 0.45, p < 0.01, respectively). Married patients showed higher levels of peaceful acceptance than unmarried patients (p < 0.001). Poorer performance status, chemotherapy use, and recurrence or metastasis were significantly associated with higher levels of struggle with illness (p < 0.001).

Significance Of Results: This study indicated that the PEACE-J is a valid and reliable measure of the patient's sense of acceptance, calmness or equanimity, and peace, as well as their sense of struggle or desperation concerning their illness.
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http://dx.doi.org/10.1017/S1478951521000924DOI Listing
June 2021

Factors related to specialized palliative care use and aggressive care at end of life in Japanese patients with advanced solid cancers: a cohort study.

Support Care Cancer 2021 Dec 25;29(12):7805-7813. Epub 2021 Jun 25.

Department of Palliative Medicine, Tohoku University School of Medicine, Sendai, Japan.

Purpose: This study aimed to (1) describe characteristics of aggressive care at the end of life (EOL) and (2) identify factors associated with specialized palliative care use (SPC) and aggressive care at the EOL among Japanese patients with advanced cancer.

Methods: This single-center, follow-up cohort study involved patients with advanced cancer who received chemotherapy at Tohoku University Hospital. Patients were surveyed at enrollment, and we followed clinical events for 5 years from enrollment in the study. We performed multivariate logistic regression analysis to identify independent factors related to SPC use and chemotherapy in the last month before death.

Results: We analyzed a total of 135 patients enrolled between January 2015 and January 2016. No patients were admitted to the intensive care unit, and few received resuscitation or ventilation. We identified no factors significantly associated with SPC use. Meanwhile, younger age (20-59 years, odds ratio [OR] 4.10; 95% confidence interval [CI] 1.30-12.91; p = 0.02) and no receipt of SPC (OR 4.32; 95% CI 1.07-17.37; p = 0.04) were associated with chemotherapy in the last month before death.

Conclusion: Younger age and a lack of SPC were associated with chemotherapy at the EOL in patients with advanced cancer in Japan. These findings suggest that Japanese patients with advanced cancer may benefit from access to SPC.
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http://dx.doi.org/10.1007/s00520-021-06364-wDOI Listing
December 2021

Differences in characteristics of children with cancer who receive standard versus concurrent hospice care.

Pediatr Blood Cancer 2021 09 27;68(9):e29106. Epub 2021 May 27.

College of Nursing, University of Tennessee, Knoxville, Tennessee, USA.

Background: The provision of Section 2302 of the 2010 Patient Protection and Affordable Care Act (ACA) allowed pediatric patients who are enrolled in Medicaid to receive hospice care concurrently with curative treatment (i.e., concurrent hospice care). Because it is a relatively new model of care and very little is known about the characteristics of children with cancer who receive it, the purpose of the current study was to compare demographic, health, and community characteristics of children who received standard hospice care versus concurrent hospice care.

Procedure: This study was a retrospective, comparison study with national Medicaid files provided by the Center for Medicare and Medicaid Services (CMS). The sample included 1685 pediatric patients under the age of 20 who were diagnosed with cancer, were enrolled in hospice between 2011 and 2013, and received standard hospice care (n = 1008) or concurrent hospice care (n = 655).

Results: Children of non-Hispanic White race with multiple complex chronic conditions, mental/behavioral health problems technology dependence, and brain and orbital tumors were more likely to be enrolled in concurrent care than in standard hospice care. The proportion of children enrolled in concurrent care versus standard hospice care was larger in rural areas, low-income communities, and in the Southern states.

Conclusions: The enhanced uptake of concurrent care by traditionally underserved populations is promising. Concurrent hospice care, which allows for continued medical treatment and hospice care, could enhance access to hospice within these populations by offering a more blended model of care.
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http://dx.doi.org/10.1002/pbc.29106DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8546534PMC
September 2021

The evolution of parents' beliefs about childhood cancer during diagnostic communication: a qualitative study in Guatemala.

BMJ Glob Health 2021 05;6(5)

Departments of Pediatric Oncology and Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Introduction: Fatalistic cancer beliefs may contribute to delayed diagnosis and poor outcomes, including treatment abandonment, for children with cancer. This study explored Guatemalan parents' cancer beliefs during initial paediatric cancer communication, and the sociocultural and contextual factors that influence these beliefs.

Methods: Twenty families of children with cancer were included in this study. We audio-recorded psychosocial conversations with psychologists and diagnostic conversations with oncologists, then conducted semi-structured interviews with parents to explore the evolution of their cancer beliefs. Audio-recordings were transcribed and translated from Spanish into English, with additional review in both languages by bilingual team members. All 60 transcripts were thematically analysed using a priori and novel codes.

Results: Guatemalan parents' beliefs evolve as they learn about cancer through various sources. Sources of information external to the cancer centre, including prior experiences with cancer, media exposure, community discussion and clinical encounters, contribute to pre-existing beliefs. Many parents' pre-existing cancer beliefs are fatalistic; some are influenced by Mayan spirituality. Sources internal to the cancer centre include psychologists and oncologists, other providers, other patients and families. Psychologists acknowledge pre-existing beliefs and deliver cancer education using verbal explanations and hand-drawings. Oncologists provide diagnostic information and outline treatment plans. Both support hope by providing a path toward cure. Parents' lived experience is a culmination of sources and simultaneously independent. Ultimately most parents arrive at an understanding of cancer that is consistent with an allopathic medical model and offers optimism about outcomes.

Conclusion: An interdisciplinary communication process that includes cancer education, is attentive to pre-existing beliefs, and supports hope may encourage acceptance of the allopathic medical model and need for treatment. Providers in settings of all resource levels may be able to use these techniques to support cross-cultural cancer communication, reduce treatment abandonment and improve therapy adherence.
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http://dx.doi.org/10.1136/bmjgh-2020-004653DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8160167PMC
May 2021

Conflicting goals and obligations: Tensions affecting communication in pediatric oncology.

Patient Educ Couns 2022 Jan 7;105(1):56-61. Epub 2021 May 7.

Department of Medicine, Washington University School of Medicine, St. Louis, MO, USA.

Objectives: To describe the tensions experienced by clinicians and psychosocial professionals that affect communication in pediatric oncology.

Methods: Ten focus groups with nurses, nurse practitioners, physicians, and psychosocial professionals at 2 US institutions. We analyzed transcripts using thematic analysis, assessing tensions experienced when communicating with parents.

Results: We identified 5 themes of tensions, defined as challenges experienced when clinicians and psychosocial professionals are trying to achieve multiple conflicting goals or obligations while communicating: (1) Supporting parental hopes while providing honest opinions and information; (2) disclosing all possible outcomes while avoiding the creation of new worries or uncertainties; (3) building relationships while maintaining personal boundaries; (4) disclosing sensitive information while adhering to professional role and perceived authority; (5) validating parental beliefs or decisions while fulfilling obligation for honesty. Some tensions represented conflicts between different communication goals. Others represented conflicts between a communication goal and another obligation.

Conclusion: Clinicians and psychosocial professionals experience tensions that affect communication with parents in pediatric oncology. Some tensions might be addressed with interventions or education. Others will require further analysis to provide sufficient guidance to clinicians.

Practice Implications: Unaddressed tensions might lead to poor communication and clinician burnout. Future work should explore solutions to these tensions.
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http://dx.doi.org/10.1016/j.pec.2021.05.003DOI Listing
January 2022

Evaluation of Patient-Reported Outcome Measures of Positive Psychosocial Constructs in Children and Adolescent/Young Adults with Cancer: A Systematic Review of Measurement Properties.

J Adolesc Young Adult Oncol 2021 May 13. Epub 2021 May 13.

Department of Psychiatry and Behavioral Sciences, Oklahoma State University Center for Health Sciences, Tulsa, Oklahoma, USA.

Children, adolescents, and young adults with cancer are a vulnerable population in whom improvements in psycho-oncology care would be valuable. We previously published a scoping review exploring what is known about positive psychological constructs in this population. A key finding was that evidence-based patient-reported outcome measures (PROMs) were needed to standardize psycho-oncology research. We undertook a systematic review of measurement properties focused on PROMs in the pediatric and adolescent/young adults (AYAs) with cancer populations. We searched for PROMs that measured at least 1 of 15 previously identified, key positive constructs. This systematic review followed COSMIN guidelines, considered the gold standard manual for systematic reviews of measurement properties. We identified 20 (22 if proxy reports are counted separately) unique PROMs that met inclusion criteria. Of those, only five were recommended for use given the current evidence. The remainder may be used if no alternative exists. Only eight PROMs had any evidence of content validity, considered the most important psychometric property by COSMIN. Many studies were at risk of bias owing to incomplete or suboptimal methods. Five PROMs are considered reliable for the pediatric and AYA with cancer populations. A number of PROMs require additional research to ensure their items and instructions are comprehensive, relevant, and comprehensible to children and AYAs. Given the overall lack of research, this review may be considered a starting point for the future refinement of a core set of PROMs to measure positive psychological constructs.
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http://dx.doi.org/10.1089/jayao.2021.0031DOI Listing
May 2021

Prognostic Communication Between Oncologists and Parents of Children With Advanced Cancer.

Pediatrics 2021 06 5;147(6). Epub 2021 May 5.

Dana-Farber Cancer Institute, Boston, Massachusetts; and.

Background And Objectives: Parents of children with cancer perceive deficits in quality of prognostic communication. How oncologists disclose information about disease progression and incurability and how prognostic communication impacts parental understanding of prognosis are poorly understood. In this study, we aimed to (1) characterize communication strategies used by pediatric oncologists to share prognostic information across a child's advancing illness course and (2) explore relationships between different communication approaches and concordance of oncologist-parent prognostic understanding.

Methods: In this prospective, longitudinal, mixed-methods study, serial disease reevaluation conversations were audio recorded across an advancing illness course for children with cancer and their families. Surveys and interviews also were conducted with oncologists and caregivers at specific time points targeting disease progression.

Results: Seventeen children experienced advancing illness on study, resulting in 141 recordings (40 hours). Fewer than 4% of recorded dialogue constituted prognostic communication, with most codes (77%) occurring during discussions about frank disease progression. Most recordings at study entry contained little or no prognosis communication dialogue, and oncologists rated curability lower than parents across all dyads. Parent-oncologist discordance typically was preceded by conversations without incurability statements; ultimately, concordance was achieved in most cases after the oncologist made direct statements about incurability. Content analysis revealed 3 distinct patterns (absent, deferred, and seed planting) describing the provision of prognostic communication across an advancing pediatric cancer course.

Conclusions: When oncologists provided direct statements about incurability, prognostic understanding appeared to improve. Further research is needed to determine optimal timing for prognostic disclosure in alignment with patient and family preferences.
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http://dx.doi.org/10.1542/peds.2020-044503DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8503785PMC
June 2021

A National Profile of Children Receiving Pediatric Concurrent Hospice Care, 2011 to 2013.

J Hosp Palliat Nurs 2021 06;23(3):214-220

When the 2010 Patient Protection and Affordable Care Act (ACA) was passed, it fundamentally changed end-of-life care for children. Concurrent Care for Children (ACA, section 2302) enables Medicaid/Children's Health Insurance Program children with a prognosis of 6 months to live to use hospice care while continuing treatment for their terminal illness. Although ACA, section 2302, was enacted a decade ago, little is known about these children. The purpose of this study was to generate the first-ever national profile of children enrolled in concurrent hospice care. Using data from multiple sources, including US Medicaid data files from 2011 to 2013, a descriptive analysis of the demographic, community, hospice, and clinical characteristics of children receiving concurrent hospice care was conducted. The analysis revealed that the national sample was extremely medically complex, even for children at end of life. They received care within a complicated system involving primary care providers, hospices, and hospitals. These findings have clinical and care coordination implications for hospice nurses.
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http://dx.doi.org/10.1097/NJH.0000000000000738DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8085409PMC
June 2021

"Don't be afraid to speak up": Communication advice from parents and clinicians of children with cancer.

Pediatr Blood Cancer 2021 08 16;68(8):e29052. Epub 2021 Apr 16.

Department of Medicine, Washington University School of Medicine, St. Louis, Missouri, USA.

Background: Parents and clinicians of children with cancer can provide advice to improve communication that reflects lessons learned through experience. We aimed to identify categories of communication advice offered to parents of children with cancer from clinicians and other parents.

Procedure: (1) Semi-structured interviews with 80 parents of children with cancer at three sites; (2) single-item, open-ended survey administered following 10 focus groups with 58 pediatric oncology clinicians at two sites. We asked participants for communication advice to parents, and analyzed responses using semantic content analysis.

Results: Parents provided five categories of communication advice to other parents. Advocacy involved asking questions, communicating concerns, and speaking up for the child. Support involved pursuing self-care, seeking and accepting help, and identifying supportive communities. Managing information involved taking and organizing notes, remaining open to difficult truths, and avoiding inaccurate information. Partnership involved establishing open lines of communication with clinicians, making the family's values and priorities known, and trusting the clinical team. Engaging and supporting the child involved, understanding and incorporating the child's preferences and values, and creating a loving environment. Clinicians' advice addressed similar categories, although only one clinician described engaging and supporting the child. Furthermore, parental advice expanded beyond interactions with the clinical team, whereas clinician advice focused more on the role of clinicians.

Conclusions: Parents and clinicians of children with cancer provided five categories of communication advice. With these data, clinicians, health care organizations, support groups, and patient advocates could offer experience-informed advice to parents who are seeking information and support.
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http://dx.doi.org/10.1002/pbc.29052DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8286806PMC
August 2021

Assume It Will Break: Parental Perspectives on Negative Communication Experiences in Pediatric Oncology.

JCO Oncol Pract 2021 06 13;17(6):e859-e871. Epub 2021 Apr 13.

Department of Medicine, Washington University School of Medicine, St Louis, MO.

Purpose: Communication breakdowns in pediatric oncology can have negative consequences for patients and families. A detailed analysis of these negative encounters will support clinicians in anticipating and responding to communication breakdowns.

Methods: Semistructured interviews with 80 parents of children with cancer across three academic medical centers during treatment, survivorship, or bereavement. We analyzed transcripts using semantic content analysis.

Results: Nearly all parents identified negative communication experiences (n = 76). We identified four categories of contributors to negative experiences: individual (n = 68), team (n = 26), organization (n = 46), and greater health care system (n = 8). These experiences involved a variety of health care professionals across multiple specialties. Parents reported 12 personal consequences of communication breakdowns: emotional distress (n = 65), insufficient understanding (n = 48), decreased trust or confidence (n = 37), inconvenience (n = 36), medical harm (n = 23), decreased self-confidence (n = 17), decreased emotional support (n = 13), decreased engagement (n = 9), false hope (n = 9), decreased hope (n = 7), financial insult (n = 7), and decreased access to resources (n = 3). We identified five categories of supportive responses from clinicians: exploring (n = 8), acknowledging (n = 17), informing (n = 27), adapting (n = 27), and advocating (n = 18). Parents often increased their own advocacy on behalf of their child (n = 47). Parents also identified the need for parental engagement in finding solutions (n = 12). Finally, one parent suggested that clinicians should assume that communication will fail and develop contingency plans in advance.

Conclusion: Communication breakdowns in pediatric oncology negatively affect parents and children. Clinicians should plan for communication breakdowns and respond by exploring, acknowledging, informing, adapting, advocating, and engaging parents in finding solutions.
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http://dx.doi.org/10.1200/OP.20.01038DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8257978PMC
June 2021

Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013.

J Spec Pediatr Nurs 2021 10 3;26(4):e12333. Epub 2021 Apr 3.

College of Nursing, University of Tennessee, Knoxville, Tennessee, USA.

Purpose: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while still receiving life-prolonging therapy. There are gaps in understanding factors associated with pediatric concurrent hospice care use. The objectives were to examine the prevalence of concurrent hospice care overtime and investigated the relationship between medical complexity and concurrent hospice care among Medicaid children.

Design And Methods: We used national Medicaid data and included children less than 21 years with an admission to hospice care. Medical complexity was defined with four criteria (i.e., chronic conditions, functional limitations, high health care use and substantial needs). Using multivariate logistic regression, we evaluated the influence of medical complexity on concurrent hospice care use, while controlling for demographic, hospice, and community characteristics.

Results: Thirty-four percent of the study sample used concurrent hospice care. Medical complexity was unrelated to concurrent hospice care. However, the four individual criteria were associated. A complex chronic condition was negatively related to concurrent hospice care, whereas technology dependence, multiple complex chronic conditions, and mental/behavioral disorders were positively associated to concurrent care use.

Practice Implications: These findings suggest that concurrent hospice care may be important for a subset of medically complex children with functional limitations, high health utilization, and substantial needs at end of life.
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http://dx.doi.org/10.1111/jspn.12333DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8547133PMC
October 2021
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