Search

Background: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. Methods: Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other). Associations between HMH and parent distress measured by the State‐Trait Anxiety Inventory–State and the 10‐item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders. Results: Among 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing + other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non‐White race, Spanish‐speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid‐only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7–14.7]) and depression (MD, 4.1 [95% CI, 1.7–6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8–18.5]; depression: MD, 4.9 [95% CI, 1.3–8.6]; housing + other HMH: anxiety: MD, 12.0 [95% CI, 5.2–18.9]; depression: MD, 4.8 [95% CI, 1.8–7.8]). Conclusions: HMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress. Plain Language Summary: In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association.Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing. The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown. This cross‐sectional analysis of 150 parents of children with advanced cancer with baseline data from a multisite parallel randomized controlled trial showed that HMH was highly prevalent and significantly associated with higher parent distress, and that housing hardship was the primary driver of this association. [ABSTRACT FROM AUTHOR]

A study with an aim to determine whether pediatric deaths attributed to complex chronic medical conditions is presented. The analysis reveal that the number of children who die with complex chronic conditions are occur increasingly in the home, supporting this hypothesis.

Background: Prior work in adult oncology suggests minority patients are less involved in decision making than preferred. However, few studies have explored decision-making experiences of minority parents in pediatric oncology. Objective: To determine whether parental decision-making preferences and experiences vary by race/ethnicity. Design: Questionnaire-based cohort study. Setting/Subjects: Three hundred sixty five parents of children with cancer and their oncologists at two academic centers. Measurements: Parents reported on preferred and actual decision-making roles. Associations between race/ethnicity and decision-making outcomes determined by chi-squared test. Results: Most parents preferred shared decision making (235/368, 64%), whereas 23% (84/368) preferred parent-led decision making and 13% (49/368) preferred oncologist-led decision making. Parental decision-making preferences did not differ by race/ethnicity (p = 0.38, chi-squared test). However, the actual role parents played in decision making differed by parental race/ethnicity, with 25% (71/290) of white parents reporting parent-led decision making, versus 37% (9/24) of black parents, 48% (13/27) of Hispanic parents, and 56% (15/27) of Asian/other parents (p = 0.005, chi-squared test). Oncologists accurately predicted parental preferences for decision making 49% of the time (n = 165/338), but accuracy also differed by race and ethnicity. Oncologists accurately predicted parental preferences for 53% of white parents (140/266), 23% of black parents (5/22), 37% of Hispanic parents (10/27), and 43% of Asian/other race parents (10/23) (p = 0.026, chi-squared test). Conclusions: Minority parents held more active roles than white parents, and oncologists had more difficulty predicting decisional preferences for minority parents relative to white parents. These findings suggest that minority parents are at risk of inferior decision-making experiences. [ABSTRACT FROM AUTHOR]

Background: Despite growing evidence and support for shared decision making, little is known about the experiences of parents who hold more active roles than they wish.Methods: This was a prospective cohort study of 372 parents of children with cancer and their oncologists at 2 academic pediatric hospitals. Parents were surveyed within 12 weeks of the diagnosis, and they were assessed for associated factors and outcomes of holding a more active decision-making role than they preferred. Parents were asked about their preferred and actual roles in decision making. Oncologists were asked to estimate parental preferences.Results: Most parents preferred to share decision making with the oncologist (64% [236 of 372]); however, 13% (49 of 372) preferred oncologist-led decision making. Most parents fulfilled their ideal decision-making role (66% [244 of 372]), but a notable minority were either more involved (14% [52 of 372]) or less involved than they preferred (20% [76 of 372]; P < .0001 [McNemar test]). Oncologists recognized parents' preferred roles in 49% of cases (167 of 341); 24% (82 of 341) of parents preferred more active roles than the oncologist recognized, and 27% (92 of 341) preferred less active roles than recognized. No parent or communication characteristics were found that were associated with parents' holding a more active role than desired in decision making. Parents who held more active roles in decision making than they wished had higher odds of decisional regret (odds ratio, 3.75; 95% confidence interval, 2.07-6.80; P < .0001).Conclusions: Although many parents fulfill their desired roles in decision making about their child's cancer, some are asked to take on more active roles than they wish. Holding a more active role than desired may lead to increased decisional regret. [ABSTRACT FROM AUTHOR]

Background: Parents of children with cancer have unmet information needs regarding future limitations resulting from cancer or its treatment. Prior research has demonstrated that, in early care discussions, clinicians focus on the acute effects of therapy rather than long-term limitations, partly due to worries of causing distress. The validity of concerns regarding distress is unknown. In the current study, the authors evaluated parental distress associated with information regarding future limitations, and the extent to which distress is associated with information preferences.Methods: The authors surveyed 355 parents of children with cancer within 3 months of diagnosis, and the children's physicians at Dana-Farber Cancer Institute/Boston Children's Cancer and Blood Disorders Center and the Children's Hospital of Philadelphia. The primary outcome was parental distress associated with information regarding long-term limitations.Results: Approximately 46% of parents found information regarding future limitations to be extremely or very upsetting. In multivariate analysis, parents were more likely to consider information regarding future limitations distressing if they also found prognostic information upsetting (odds ratio [OR], 5.36; P<.001), struggled to accept their child's illness (OR, 2.57; P<.001), or had depression (OR, 1.79; P=.01). However, approximately 92% of parents considered information regarding potential future limitations to be extremely/very important. Those who found information regarding future limitations distressing were more likely to consider it important (96% vs 89%; P=.03) and to desire a precise understanding of their child's risks (92% vs 80%; P=.001).Conclusions: Although information regarding future limitations caused by cancer treatment is upsetting to many parents, the majority of them desire this information, and those who are distressed are more likely to value this information. [ABSTRACT FROM AUTHOR]

Background: Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. The objectives of this study were to describe fatigue as prospectively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress.Methods: Children (age ≥2 years) with advanced cancer (N = 104) or their parents at 3 academic hospitals reported symptoms at most weekly over 9 months using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system. PediQUEST administered a modified version of the Memorial Symptom Assessment Scale (PQ-MSAS) as part of a randomized controlled trial. Clinical information was abstracted from medical records. Primary outcomes were: 1) fatigue prevalence (yes/no response to PQ-MSAS fatigue item) and 2) fatigue distress (composite score of severity, frequency, and bother). Multivariable models were constructed to identify factors independently associated with fatigue prevalence and scores reflecting fatigue distress (ie, burden).Results: Of 920 reports, 46% (n = 425) noted fatigue. When reported, fatigue was of high frequency in 41% of respondents (n = 174), severity in 25%of respondents (n = 107), and bother in 34%of respondents (n = 143). Most reports (84%; n = 358) were associated with scores indicating fatigue distress. In multivariable analyses, fatigue was associated with older age, lower hemoglobin, and distress from particular symptoms (anorexia, nausea, sleep disturbance, sadness, and irritability). In contrast, fatigue distress was associated with distress from nausea, cough, and pain.Conclusions: Fatigue is common among children with advanced cancer and is often highly distressing. Interventions focused on uncontrolled symptoms may ease fatigue distress in children with advanced cancer. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis. METHODS: Prospective, questionnaire-based cohort study of parents and physicians of children with cancer at 2 academic pediatric hospitals. We asked parents how they learned about prognoses and evaluated relationships between information sources and prognostic understanding, defined as accuracy versus optimism. We excluded parents with pessimistic estimates and whose children had such good prognoses that optimism relative to the physician was impossible. Analytic cohort of 256 parent-physician pairs. RESULTS: Most parents considered explicit sources (conversations with oncologists at diagnosis, day-to-day conversations with oncologists, and conversations with nurses) "very" or "extremely" informative (73%-85%). Implicit sources (parent's sense of how child was doing or how oncologist seemed to feel child was doing) were similarly informative (84%-87%). Twenty-seven percent (70/253) of parents reported prognostic estimates matching physicians' estimates. Parents who valued implicit information had lower prognostic accuracy (odds ratio [OR] 0.50; 95% confidence interval 0.29-0.88), especially those who relied on a "general sense of how my child's oncologist seems to feel my child is doing" (OR 0.47; 0.22-0.99). Parents were more likely to use implicit sources if they reported receiving high-quality prognostic information (OR 3.02; 1.41-6.43), trusted the physician (OR 2.01; 1.01-3.98), and reported high-quality physician communication (OR 1.81; 1.00-3.27). CONCLUSIONS: Reliance on implicit sources was associated with overly-optimistic prognostic estimates. Parents who endorsed strong, trusting relationships with physicians were not protected against misinformation. [ABSTRACT FROM AUTHOR]

Background: The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings. Objective: We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology would be comparable to the general population of children their age; and (2) higher family functioning scores would be associated with lower clinical scores and higher adaptive scores for these siblings. Methods: We conducted an observational study with families in which a patient receiving palliative care had one or more siblings between the ages of 6 and 11. Parents completed the Behavioral Assessment System for Children, Second Edition (BASC-2) to assess the siblings' psychological well-being and the Family Assessment Device (FAD) to assess the family environment. Results: Twenty-four parents reported data for 30 siblings. Only three siblings scored in the clinical range on a BASC-2 composite clinical scale, and 11 siblings scored in the at-risk range on one or more composite scales. Higher FAD scores predicted significantly higher externalization composite clinical scores (7.54, 95% CI: 1.12, 13.97, p < 0.05) and significantly higher behavioral composite scores (7.88, 95% CI: 1.55, 14.21, p < 0.05). Discussion: Siblings of pediatric palliative care patients are not experiencing lower psychological well-being than the general population. The prediction that a positive family environment would be associated with higher levels of psychological health was supported. [ABSTRACT FROM AUTHOR]

Infants born with trisomy 18 have multiple congenital abnormalities and shortened life spans. Advances in medical and surgical technology have provided some families with choices to optimize care. Given the differing outcomes that exist for infants born with trisomy 18, several questions are raised that carry weighty ethical implications. A case study will be discussed to illustrate the ethical dilemmas that nurses encounter when caring for infants with Trisomy 18. These dilemmas include the following: (1) When is it ethical to limit options offered for medical interventions? (2) Who makes decisions when options for medical interventions are considered futile? (3) What principles guide decisions about care? (4) What options are available to nurses when they do not agree with family members about suffering? [ABSTRACT FROM AUTHOR]

Background: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling. Discussion: Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. Summary: The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process. [ABSTRACT FROM AUTHOR]

Over the past decade, pediatric palliative medicine in the United States has advanced to a remarkable degree. This article situates these changes in the general context of the growth of adult-focused palliative medicine, and enumerates several landmark reports, studies, programmatic initiatives, and professional developments that serve as milestones marking the progress of the field, while also underscoring the continuing need to better educate families and health care providers about what pediatric palliative care can offer patients, to expand the evidence base regarding specific pediatric palliative care interventions, and to further our abilities to finance and improve these services. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC. [ABSTRACT FROM AUTHOR]

Background: Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. Objective: To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. Method: A cross-sectional survey of nurses at a freestanding children's hospital in 2005. Results: Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. Conclusions: Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs. [ABSTRACT FROM AUTHOR]

After years of the palliative care community calling for more open access to hospice services, pediatric patients are now eligible to receive simultaneous hospice services and disease-directed therapy. We report on five types of challenges that our team has experienced when implementing concurrent care, illustrated through case studies of three medically complex pediatric patients. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to the article "Hopeful Thinking and Level of Comfort Regarding Providing Pediatric Palliative Care: A Survey of Hospital Nurses," by C. Feudtner, G. Santucci, J. A. Feinstein, C. R. Snyder, M. T. Rourke and T. I. Kang in the July 2007 issue.

1. Develop ideas about ways to integrate palliative care into the care of children, adolescents, and young adults with advanced cancer. 2. Develop ideas about ways to integrate electronic patient reported outcome measures into the care of children, adolescents, and young adults with advanced cancer. PediQUEST Response is an intervention for children with advanced cancer that combines e-PROMS and specialty palliative care integration. Parents of children receiving the intervention reported better child quality of life compared to controls. This is the first RCT to show the positive impact of palliative care in pediatric oncology. Evidence about the impact of specialty pediatric palliative care (SPPC) is low.(1) Pediatric Quality of Life and Evaluation of Symptoms Technology Response to Pediatric Oncology Symptom Experience (PQ-Response) aims to integrate SPPC into the routine care of pediatric advanced cancer patients. To evaluate whether PQ-Response, compared to usual care, improves patient's health related quality of life (HRQoL) as reported by parents. Multisite, randomized (1:1; allocation concealed), controlled, un-blinded trial comparing PQ-Response (intervention) to usual cancer care (control) conducted at five large pediatric cancer centers.(2) Participants: Children ≥2 years old (+1 parent) with advanced cancer, SPPC "naïve," and receiving longitudinal care at the site. Interventions: PQ-Response combined the use of the PQ-web/app to provide feedback of patient- and parent-reported child symptoms and HRQoL to families and clinicians with integration of SPPC. Usual Cancer Care: participants answered PQ-surveys (no feedback provided) and received usual care. Procedures: Patients ≥5 years old and parents answered weekly PQ-Surveys assessing symptom distress and HRQoL (Pediatric Quality of Life Inventory 4.0 (PedsQL)). After a 2-week run-in period, dyads who answered ≥2 PQ-surveys/participant were randomized and followed for 16-weeks. Primary outcome: mean parent-reported patient HRQoL score (0-100, 100 better) over 16-weeks. Child-reported outcomes and symptom distress are not reported here. We enrolled 196 patients, 154 were randomized; analysis included 152 who reported ≥1 HRQoL score during follow-up (74 Intervention/ 78 Control). Child's mean age was 11 years, 49% were female, 45% had brain tumors, 39% solid tumors, and 16% hematologic malignancies. PQ-Response was associated with improvements in PedsQL total (3.4; 95%CI: 0.5, 6.4; p=0.024) and physical scores (4.5; 95%CI: 0.3, 8.7; p=0.034). PQ-Response was associated with improvement in child HRQoL. Integration of SPPC combined with routine feedback about symptoms and HRQoL leads to better child quality of life in pediatric advanced cancer. ClinicalTrials.gov (NCT03408314) – NINR/NIH Pediatrics Palliative care in oncology [ABSTRACT FROM AUTHOR]