Parental Understanding of Their Child's Germline Genomic Testing: Intent of Disclosure to Their Child and Family.

Genomic testing is becoming increasingly common in the care of pediatric patients with cancer. Parental understanding of germline results and their intent and timing of results disclosure to their child and family may have significant implications on the family unit. The purpose of this study was to examine parental understanding of germline genomic results and plans for disclosure to their child and other relatives. Semi-structured interviews were conducted with 64 parents of children with cancer, approximately eight weeks after parents had received their child's results. Parents of children with negative results (n = 20), positive results (n = 15), or variants of uncertain significance (n = 29), were interviewed. Fifty-three parents (83%) correctly identified their child's results as negative, uncertain, or positive. Most parents had disclosed results to family members; however, only 11 parents (17%) acknowledged discussing results with their child. Most parents delayed disclosure due to the young age of their child at the time of testing. In summary, most parents appropriately described their child's germline genomic results, yet few discussed the results with their child due to age. Families should be followed with supportive counseling to assist parents in the timing and content of result disclosure to their children.

Parent Quality of Life After Disclosure of Pediatric Oncology Germline Sequencing Results.

PURPOSE: To characterize parents' quality of life (QoL) after germline genomic sequencing for their children with cancer. METHODS: Participants were n = 104 parents of children with cancer enrolled in a prospective study of clinical tumor and germline genomic sequencing. Parents completed surveys at study consent (T0), before disclosure of their child's germline results (T1), and again ≥5 weeks after results disclosure (T2). Bivariate associations with QoL were examined, followed by a multivariable regression model predicting parents' psychological distress. RESULTS: At T2, parental distress significantly differed by their children's germline result type (positive, uncertain, negative; P = .038), parent relationship status (P = .04), predisclosure genetics knowledge (P = .006), and predisclosure worry about sequencing (P < .001). Specifically, parents of children with positive (ie, pathogenic or likely pathogenic) results experienced greater distress than those of children with negative results (P = .029), as did parents who were single, more knowledgeable about genetics, and with greater worry. In the adjusted regression model, a positive germline result remained significantly associated with parents' lower QoL at T2 follow-up (F [4,92] = 9.95; P < .001; R2 = .30; ß = .19; P = .031). CONCLUSION: Germline genomic sequencing for children with cancer is associated with distress among parents when revealing an underlying cancer predisposition among their affected children. Genetic education and counseling before and after germline sequencing may help attenuate this impact on QoL by addressing parents' concerns about test results and their health implications. Assessing parents' worry early in the testing process may also aid in identifying those most likely in need of psychosocial support.

Pediatric Early Warning Systems (PEWS) improve provider-family communication from the provider perspective in pediatric cancer patients experiencing clinical deterioration.

BACKGROUND: Communication between providers and patients' families is an integral part of clinical care. Family concern is a validated component of Pediatric Early Warning Systems (PEWS); however, little is known about the impact of PEWS on provider-family communication. METHODS: Semi-structured interviews were conducted with 83 ward and Pediatric Intensive Care Unit (PICU) providers involved in the care of patients with deterioration at two pediatric oncology hospitals of different resource levels: St. Jude Children's Research Hospital (n = 42) in the United States and Unidad Nacional de Oncología Pediátrica (UNOP, n = 41) in Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Transcripts were coded by two researchers and analyzed for thematic content surrounding family communication and concern. RESULTS: All participants recognized patients' families as a valuable part of the care team, particularly during events requiring escalation of care. Perceived barriers to communication included limited time spent at the bedside, and, at UNOP, language and literacy challenges which occasionally limited providers' ability to assess family concern and involve families in patient care. Despite these barriers, providers perceived PEWS improved communication by facilitating more interaction with families, allowing for relationship-building, anticipatory guidance, and destigmatization of the PICU. PEWS assessments also allowed families to contribute to identification of deterioration. CONCLUSIONS: PEWS improve the quality of communication between providers and families by providing more opportunities for interaction, building relationships, and trust. These findings further support the use of PEWS in the care of children with cancer in hospitals of all resource-levels.

Multidisciplinary Clinician Perspectives on Embedded Palliative Care Models in Pediatric Cancer.

CONTEXT: Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that embedded models improve quality of care and quality of life for patients and families. OBJECTIVES: To describe the perspectives and preferences of multidisciplinary clinicians regarding ideal models for PC integration in pediatric cancer care; to introduce clinicians to the theoretical concept of an embedded care model; to empower clinicians in co-design of a new institutional model through collaborative discussion of anticipated benefits and challenges of embedded model implementation. METHODS: Trained facilitators conducted 24 focus groups, stratified by discipline and care team. Focus groups were audio-recorded and transcribed for inductive content analysis using MAXQDA software. RESULTS: 174 clinicians participated (25 physicians, 30 advanced practice providers [APPs], 70 nurses, 49 psychosocial clinicians). Clinicians across disciplines verbalized that an embedded PC model would improve access to PC; however, identified benefits and challenges varied by discipline. Benefits included earlier integration of PC (physicians, APPs), normalization of PC as an integral aspect of care by patients/families (nurses, psychosocial), collaboration (physicians, psychosocial clinicians), and communication (APPs, psychosocial). Anticipated challenges included inadequate resources and physician resistance (physicians, APPs, nurses) and multidisciplinary role confusion (APPs, nurses, psychosocial). CONCLUSION: Pediatric clinicians recognize the potential value of an embedded PC model. Although some concepts overlapped, multidisciplinary clinicians offered unique beliefs, highlighting the importance of including representative perspectives to ensure that pediatric PC models align with priorities of diverse stakeholders.

Impact of PEWS on Perceived Quality of Care During Deterioration in Children With Cancer Hospitalized in Different Resource-Settings.

BACKGROUND: Children with cancer are at high risk for clinical deterioration and subsequent mortality. Pediatric Early Warning Systems (PEWS) have proven to reduce the frequency of clinical deterioration in hospitalized patients. This qualitative study evaluates provider perspectives on the impact of PEWS on quality of care during deterioration events in a high-resource and a resource-limited setting. METHODS: We conducted semi-structured interviews with 83 healthcare staff (nurses, pediatricians, oncology fellows, and intensivists) involved in recent deterioration events at two pediatric oncology hospitals of different resource levels: St. Jude Children's Research Hospital (SJCRH; n = 42) and Unidad Nacional de Oncología Pediátrica (UNOP; n = 41). Interviews were conducted in the participant's native language (English or Spanish), translated into English, and transcribed. Transcripts were coded and analyzed inductively. RESULTS: Providers discussed both positive and negative perspectives of clinical deterioration events. Content analysis revealed "teamwork," "experience with deterioration," "early awareness," and "effective communication" as themes associated with positive perception of events, which contributed to patient safety. Negative themes included "lack of communication," "inexperience with deterioration," "challenges with technology", "limited material resources," "false positive score," and "objective tool." Participants representing all disciplines across both institutions shared similar positive opinions. Negative opinions, however, differed between the two institutions, with providers at UNOP highlighting limited resources while those at SJCRH expressing concerns about technology misuse. CONCLUSION: Providers that care for children with cancer find PEWS valuable to improve the quality of hospital care, regardless of hospital resource-level. Identified challenges, including inadequate critical care resources and challenges with technology, differ by hospital resource-level. These findings build on growing data demonstrating the positive impact of PEWS on quality of care and encourage wide dissemination of PEWS in clinical practice.

Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with Cancer.

OBJECTIVES: To qualitatively describe parent perspectives of next-generation genomic sequencing (NGS) for their children with cancer, including perceived benefits, risks, hopes/expectations, and decision-making process when consenting or not consenting to NGS and prior to result disclosure. DATA SOURCES: Qualitative interviews were used. CONCLUSION: Altruism is an important factor in parents consenting to NGS testing, as well as making sense of their child's cancer and legacy building. Parents described realistic hopes and expectations associated with NGS participation. Although parents endorsed the likelihood of no medical benefit, those consenting to NGS felt there was no reason not to participate. Parents declining participation expressed avoidance of worry and parent guilt if a germline variant were to be disclosed. IMPLICATIONS FOR NURSING PRACTICE: As NGS evolves into a component of the routine diagnostic workup for pediatric cancer patients, genetic nurses play a role in conducting informed consent conversations and ensuring that patients and families have realistic hopes and expectations associated with NGS.

Clinician Emotions Surrounding Pediatric Oncology Patient Deterioration.

BACKGROUND: Pediatric oncology patients have a high rate of clinical deterioration frequently requiring critical care. Patient deterioration events are distressing for clinicians, but little is known about how Pediatric Early Warning Systems (PEWS) impact clinicians' emotional responses to deterioration events. METHODS: Semi-structured interviews were conducted with 83 nurses, pediatricians, oncologists, and intensive care clinicians who had recently participated in a patient deterioration event at two pediatric oncology hospitals of different resource-levels: St. Jude Children's Research Hospital (N = 42 participants) in Memphis, Tennessee or Unidad Nacional de Oncología Pediátrica (N = 41 participants) in Guatemala City, Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Each transcript was coded by two researchers and analyzed for thematic content. RESULTS: Emotions around patient deterioration including concern, fear, and frustration were reported across all disciplines at both hospitals. Concern was often triggered by an elevated PEWS score and usually resulted in increased attention, which reassured bedside clinicians that patients were receiving necessary interventions. However, persistently elevated PEWS scores, particularly at St. Jude Children's Research Hospital, occasionally resulted in a false sense of relief, diminishing clinician attention and negatively impacting patient care. Nurses at both institutions described how PEWS amplified their voices, engendering confidence and empowerment, two of the only positive emotions described in the study. CONCLUSION: Clinicians experienced a range of emotions while caring for high-risk patients in the setting of clinical deterioration. These emotions have the potential to contribute to compassion fatigue and burnout, or to resilience. Acknowledgment and further investigation of the complex interplay between PEWS and clinician emotions are necessary to maximize the impact of PEWS on patient safety while simultaneously supporting staff wellbeing.

Qualitative Study of Pediatric Early Warning Systems' Impact on Interdisciplinary Communication in Two Pediatric Oncology Hospitals With Varying Resources.

PURPOSE: Hospitalized pediatric oncology patients are at high risk of deterioration and require frequent interdisciplinary communication to deliver high-quality care. Pediatric early warning systems (PEWS) are used by hospitals to reduce deterioration, but it is unknown how these systems affect communication about patient care in high- and limited-resource pediatric oncology settings. METHODS: This qualitative study included semistructured interviews describing PEWS and subsequent team communication at 2 pediatric cancer centers, 1 in the United States and 1 in Guatemala. Participants included nurses, and frontline and intensive care providers who experienced recent deterioration events. Transcripts were coded and analyzed inductively using MAXQDA software. RESULTS: The study included 41 providers in Guatemala and 42 providers in the United States (33 nurses, 30 ward providers, and 20 pediatric intensive care providers). Major themes identified include "hierarchy," "empowerment," "quality and method of communication," and "trigger." All providers described underlying medical hierarchies affecting the quality of communication regarding patient deterioration events and identified PEWS as empowering. Participants from the United States described the algorithmic approach to care and technology associated with PEWS contributing to impaired clinical judgement and a lack of communication. In both settings, PEWS sparked interdisciplinary communication and inspired action. CONCLUSION: PEWS enhance interdisciplinary communication in high- and limited-resource study settings by empowering bedside providers. Traditional hierarchies contributed to negative communication and, in well-resourced settings, technology and automation resulted in lack of communication. Understanding contextual elements is integral to optimizing PEWS and improving pediatric oncology outcomes in hospitals of all resource levels.

Factors Associated with Declining to Participate in a Pediatric Oncology Next Generation Sequencing Study.

PURPOSE: For the advances of pediatric oncology next generation sequencing (NGS) research to equitably benefit all children, a diverse and representative sample of participants is needed. However, little is known about demographic and clinical characteristics that differentiate families who decline enrollment in pediatric oncology NGS research. METHODS: Demographic and clinical data were retrospectively extracted for 363 pediatric oncology patients (0-21 years) approached for enrollment on Genomes for Kids (G4K), a study examining the feasibility of comprehensive clinical genomic analysis of tumors and paired normal samples. Demographic and clinical factors that significantly differentiated which families declined were subsequently compared to enrollment in Clinical Implementation of Pharmacogenetics (PG4KDS) for 348 families, a pharmacogenomics study with more explicit therapeutic benefit examining genes affecting drug responses and metabolism. RESULTS: Fifty-three (14.6%) families declined enrollment in G4K. Race/ethnicity was the only variable that significantly differentiated study refusal using multivariate logistic regression, with families of black children more likely to decline enrollment compared to families of non-Hispanic or Hispanic white children. Reasons for declining G4K were generally consistent with other pediatric genomics research, with feeling overwhelmed and insurance discrimination fears most frequently cited. Families of black children were also more likely to decline enrollment in PG4KDS. Thirteen (3.7%) of the 348 families approached for both studies declined PG4KDS. CONCLUSION: Race/ethnicity differentiated study declination across two different pediatric oncology genomics studies, suggesting enrollment disparities in the context of pediatric oncology genomics research. Genomics research participant samples that do not fully represent racial and ethnic minorities risk further exacerbating health disparities. Additional work is needed to understand the nuances of parental decision making in genomic research and facilitate enrollment of diverse patient populations.

Health-Related Quality of Life and Survival Outcomes of Pediatric Patients With Nonmetastatic Osteosarcoma Treated in Countries With Different Resources.

PURPOSE: Health-related quality of life (HRQOL) improves throughout treatment of patients with nonmetastatic osteosarcoma. We compared HRQOL for patients in the United States and Chile treated on an international trial (OS99) with polychemotherapy and surgery, and we assessed the relationships among HRQOL measures, event-free survival (EFS), and overall survival (OS). MATERIALS AND METHODS: Patients with newly diagnosed, localized osteosarcoma and their parents completed three HRQOL instruments (PedsQL v.4, PedsQL Cancer v.3, and Symptom Distress Scale [SDS]). Data were collected at four time points throughout therapy. Repeated measures models were used to investigate the effect of treatment site on instrument scores. The log-rank test examined the impact of treatment site on survival outcomes, and Cox proportional hazards regression models evaluated baseline HRQOL measures as predictors of EFS and OS. RESULTS: Of 71 eligible patients, 66 (93%) participated in the HRQOL studies in the United States (n = 44) and Chile (n = 22). The median age was 13.4 years (range, 5 to 23 years). Clinical characteristics were similar between treatment sites. US patients reported better scores for physical ( P = .030), emotional ( P = .027), and school functioning ( P < .001). Chilean patients reported poorer scores for worry ( P < .001) and nausea ( P = .007). Patient and parent nausea scores were similar between patients treated in the United States and Chile by the end of therapy. Differences in symptom distress were not observed between the countries. Neither HRQOL measures nor treatment site were associated with EFS or OS. CONCLUSION: Although significant differences in HRQOL were observed between countries, outcomes were similar, and HRQOL measures were not associated with prognosis.

"Being a good patient" during times of illness as defined by adolescent patients with cancer.

BACKGROUND: Adolescents with cancer cite the opinions of others and expected impact on others as formative for their care preferences and decisions. The current study first explores how the concepts of being a good child and being a good patient may exist for adolescents with cancer and determines how adolescents describe and apply these concepts. The study then investigates parental actions and clinician behaviors perceived by adolescents with cancer as supportive in helping them to achieve their defined good child and good patient roles. METHODS: In a prospective study conducted at 2 cancer treatment centers over the course of 10 months, 40 adolescents with cancer responded to 10 open-ended questions. Semantic content analysis was used. An adolescent focus group validated the findings. RESULTS: Of the 40 participants in the current study, 39 confirmed 1 or both concepts; the good patient responses yielded 112 codes and 5 themes: cooperation, adherence, communication, self-care, and care for others. The good child responses revealed 88 codes and 7 themes: cooperation and respect, positivity, lightening others' burdens, taking treatment seriously, recognizing mutual impact, communication, and acknowledging mortality. Of 589 interview phrases, 184 (31%) depicted themes of care for others and 58 (10%) spoke of tolerating treatment in the hope of a better future for one's self or others. The benefits and challenges of living up to these definitions were discussed. CONCLUSIONS: Clinicians may consider asking adolescents about their "good child" and "good patient" descriptions to learn more about the perceived roles carried by adolescents with cancer and how these roles may impact their decision making, medication adherence, and social interactions. Cancer 2016;122:2224-33. © 2016 American Cancer Society.

Adolescents' preferences for treatment decisional involvement during their cancer.

BACKGROUND: This qualitative study investigated the medical decision-making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision-making involvement. METHODS: Interviews were conducted with 40 adolescents between the ages of 12 and 18 years who were undergoing cancer treatment in Memphis, Tenn or Washington, DC. Role preferences were converted into a predetermined Likert scale decisional preference score. A semantic content analysis was used to analyze patient reports of parental behaviors, attitudes, knowledge levels, and relational interactions that facilitated their preferred level of involvement in decision making. Clinician behaviors described as supportive of decisional processes were also categorized thematically. A teen advisory council validated study findings. Data reporting followed strict adherence to Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: Adolescents indicated a spectrum of preferred decisional roles, with the most common being an actively involved role (26 of 40 or 65%), although a shared decision-making approach was still valued. There was no statistically significant difference in the preferred decisional role with respect to demographic or medical characteristics, including the relapse status, although adolescents who preferred autonomous interview settings were more likely to prefer active decisional roles (P < .001). Adolescents recognized that situational and social contexts might shift their preferred level of involvement in medical decisions. Although adolescents wanted to be involved in decisions, they also expressed an appreciation of family insight, parental presence, and clinician guidance. CONCLUSIONS: Adolescents with cancer are able to retrospectively identify their preferences for inclusion in medical decision making, and even when preferring involvement, they value the input of trusted others.

Children's perspective on health-related quality of life during active treatment for acute lymphoblastic leukemia: an advanced content analysis approach.

BACKGROUND: Qualitative research provides insight into the cancer experience through the perspective of the pediatric patient. However, somewhat small sample sizes can hinder full discovery of new knowledge and limit interpretation of data. OBJECTIVE: The objective of this study was to describe health-related quality of life (HRQOL) reported by children and adolescents in responses to 2 interview questions during treatment for acute lymphoblastic leukemia (ALL) and compare their responses by age, gender, risk group, and time in treatment through a quantitative content analysis approach. METHODS: Children and adolescents (N = 150) were asked 2 validated questions in pediatric patients receiving treatment for ALL: "What makes a good day for you?" and "How has being sick been for you?" over 6 treatment time points. Interview data were coded analyzed quantitatively. RESULTS: Code frequencies differed significantly by age, gender, risk group, and time in treatment. Adolescents had a greater focus on being with friends, and females generally reported more codes representing negative experiences. Children and adolescents reported being affected by symptoms resulting from cancer treatment. Some adolescents described that being sick positively changed their lives and viewed their illness as a new life experience. CONCLUSION: The 2 proposed questions are feasible to use clinically to assess HRQOL in children and adolescents with ALL, and the qualitative codes from their descriptions can be used to identify factors affecting HRQOL of children and adolescents with leukemia. IMPLICATIONS FOR PRACTICE: Nurses can use these 2 questions to assess the HRQOL of children and adolescents during and following treatment for ALL.

Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors.

OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor tissue by autopsy of children with diffuse intrinsic pontine glioma. In the study, parents completed a questionnaire after their child's death to describe the purpose for, hopes (ie, desired outcomes of), and regrets about their participation in autopsy-related research. Parents also suggested ways to improve autopsy-related discussions. A semantic content analytic method was used to analyze responses and identify themes within and across parent responses. RESULTS: Responses from 33 parents indicated that the main reasons for participating in this study were to advance medical knowledge or find a cure, a desire to help others, and choosing as their child would want. Parents hoped that participation would help others or help find a cure as well as provide closure. Providing education/anticipatory guidance and having a trusted professional sensitively broach the topic of autopsy were suggestions to improve autopsy discussions. All parents felt that study participation was the right decision, and none regretted it; 91% agreed that they would make the choice again. CONCLUSION: Because autopsy can help advance scientific understanding of the disease itself and because parents reported having no regret and even cited benefits, researchers should be encouraged to continue autopsy-related research. Parental perceptions about such studies should be evaluated in other types of pediatric diseases.

Psychometric and clinical assessment of the 13-item reduced version of the fatigue scale-adolescent instrument.

Fatigue is one of the most common and distressing symptoms experienced by adolescents during and after treatment for cancer. The lack of reliable and valid instruments has prevented an accurate assessment of the trajectory of fatigue among adolescent oncology patients. The purposes of this study were to identify the items on the Fatigue Scale-Adolescent (FS-A) that distinguished adolescents with high fatigue and to identify the most sensitive and specific score ("cut score") in order to identify those in need of a fatigue intervention. Rasch methods were used to identify FS-A items that distinguished adolescents with high cancer-related fatigue, and results indicated that the 14-item FS-A could be reduced to 13 items. The 13-item FS-A was assessed for its psychometric properties, with application of the receiver operating characteristics curve analysis to the responses from 75 adolescents. The internal consistency coefficient was .87, and a 4-factor confirmatory analysis achieved good fit coefficients. The identified cut score was 31, with 66.6% sensitivity and 82.6% specificity; 16 (21.33%) of the patients scored 31 or higher. The 13-item FS-A has acceptable psychometric properties and is able to identify adolescent oncology patients with high fatigue.

Mechanisms of dexamethasone-induced disturbed sleep and fatigue in paediatric patients receiving treatment for ALL.

BACKGROUND: Dexamethasone contributes to high cure rates in paediatric acute lymphoblastic leukaemia (ALL) but significantly and adversely alters sleep and fatigue. Herein we explored three mechanisms (pharmacokinetics, serum albumin and pharmacogenetics) through which dexamethasone may cause debilitating fatigue and disrupted sleep. METHODS: We enrolled 100 patients on a 10-d study: 5-d of no dexamethasone (OFF DEX) followed by 5-d of dexamethasone (ON DEX) during continuation chemotherapy. Sleep variables were collected with continuous actigraphy on days 1 through 5, both OFF DEX and ON DEX. On days 2 and 5 of each 5-d period, parents and patients 7 years of age and older completed a sleep diary and Fatigue Scale questionnaire. Blood was collected at 0 (pre-dexamethasone), 1, 2, 4 and 8 h after the first oral dexamethasone dose for pharmacokinetic analysis. Serum albumin concentration was retrospectively analysed in stored samples. Patient DNA was genotyped for 99 polymorphic loci in candidate genes associated with glucocorticoid metabolism. RESULTS: Dexamethasone clearance was significantly greater in younger patients than in older ones and in lower risk patients. In multiple regression models, risk group was significantly related to pharmacokinetic parameters. We found that polymorphisms in three genes (AHSG, IL6, POLDIP3) were significantly associated with sleep measures but not with fatigue. CONCLUSION: Risk group had the most significant relationship with disrupted sleep in patients while on dexamethasone. Serum albumin levels had neither a direct relationship with sleep or fatigue variables nor an indirect relationship through systemic exposure to dexamethasone. We identified candidate genes that may help explain the adverse events of disrupted sleep in paediatric patients receiving dexamethasone.

Factors that distinguish symptoms of most concern to parents from other symptoms of dying children.

In a previous study, we conducted telephone interviews with parents 6 to 10 months after their child's death from cancer, using open-ended questions to identify the type and frequency of cancer-related symptoms that most concerned them during the last week of their child's life. Because the parents identified many clinically striking symptoms (n=109) that were not of most concern to them, we conducted a secondary analysis of these interviews (48 mothers and four fathers of 52 patients) to identify descriptive factors associated with the parents' level of concern. Six descriptive factors were associated with symptoms of most concern and 10 factors with symptoms not of most concern. Ten of these 16 factors occurred in both categories, indicating that clinicians should directly query parents to identify the symptoms that concern parents the most. Six factors differed between the two categories, and only one (the continuous distress caused by a symptom that is unrelieved) was unique to the category of symptoms of most concern. Five factors (symptom present for at least one week, symptom not seen as remarkable by the parent or causing no distress to the child, symptom well managed, symptom improved, and symptoms for which the parent felt adequately prepared) were unique to the category of symptoms not of most concern. By inquiring about symptoms of most concern and factors that influence parental concern, clinicians may be better able to direct care efforts to reduce patients' and parents' distress and support parents during the difficult end-of-life period.

Psychometric and clinical assessment of the 10-item reduced version of the Fatigue Scale-Child instrument.

Fatigue is one of the most debilitating conditions associated with cancer and anticancer therapy. The lack of reliable and valid self-report instruments has prevented accurate assessment of fatigue in pediatric oncology patients. The purpose of this study was to identify the most sensitive and specific score, that is, the "cut score," on the Fatigue Scale-Child (FS-C) to identify those children with high cancer-related fatigue in need of clinical intervention. We first used Rasch methods to identify the items on the FS-C that distinguished children with high cancer-related fatigue from other children; our findings indicated that the FS-C needed to be reduced from 14 items to 10 items. We then assessed the 10-item FS-C for its psychometric properties and applied the receiver operating characteristics curve analysis to the FS-C responses from 221 children (aged 7-12 years) receiving anticancer treatment. The cut score identified with 75% sensitivity and 73.5% specificity was 12; 73 (33%) patients scored 12 or higher. Findings from this validated instrument provide a needed guide for clinicians to interpret fatigue scores and provide clinical interventions for this debilitating condition to their pediatric patients with cancer.

Bereaved parents' perceptions about when their child's cancer-related death would occur.

Parents of terminally ill children with cancer frequently ask clinicians when their child will die. Such information helps parents prepare for the child's death. To identify how parents perceived when their child's cancer-related death would occur, we conducted a secondary analysis of telephone interviews with 49 bereaved parents 6-10 months after their child's death to extract their descriptions of this occurrence. The parents knew in advance that their child was going to die, but they described when their child's death would occur in three different ways: anticipated (parents observed changes that alerted them that death was imminent; n=22, 52.4%), surprising (parents were surprised that their child died on that particular day; n=13, 31.0%), and overdue (parents had been waiting for the end of their child's apparent suffering; n=7, 16.7%). These categories did not differ by patients' diagnosis, sex, or location of death but differed slightly by symptom patterns. Parents who reported the occurrence of their child's death as surprising reported fewer symptom changes on the last day of their child's life, compared with the last week of life, than did the parents in the other two categories. These findings indicate that parents of children with terminal cancer can perceive when their child's death would occur very differently: Some are surprised, whereas others feel they have waited too long for their child's release from suffering. Clinicians can use these descriptions and the associated symptom patterns to help families prepare for their child's last week and last day.

Aggressive treatment of non-metastatic osteosarcoma improves health-related quality of life in children and adolescents.

BACKGROUND: Health-related quality of life (HRQOL) of paediatric patients with osteosarcoma has not been documented longitudinally during treatment. Aims of this prospective study were to assess treatment effects on patients' HRQOL at diagnosis, during therapy and after completion of therapy, to assess sex- and age-related differences in HRQOL ratings and to assess differences between patients' and parents' reports. PATIENTS AND METHODS: Sixty-six patients (median age, 13.4 years) with newly diagnosed, localised disease completed three HRQOL instruments, and their parents completed two of the same instruments at diagnosis, before surgery (Week 12), at Week 23 and a median of 20 weeks after treatment completion. RESULTS: Significant improvements in most domains and worsening of nausea were reported by patients and parents from diagnosis to Weeks 12 and 23. Symptom distress decreased from diagnosis to Weeks 12 and 23 in 81% and 64% of patients, respectively. There were no sex- and few age-related differences in scores. Scores from patients and parents achieved good agreement. CONCLUSIONS: The HRQOL of patients improves during aggressive treatment for non-metastatic osteosarcoma, except in the domain of nausea. Clinicians can use these findings to prepare their patients for the distressing symptoms that they will likely experience at certain time points and to provide reassurance that these will significantly improve.