What's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer
adolescent; Female; Humans; Male; Neoplasms; Adult; Parents; Prognosis; Questionnaires; Disease Progression; Research; quality of life; Life Expectancy; prog; surveys
Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. Design: Cross-sectional, survey-based study embedded within a randomized controlled trial. Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.
2014-05
Rosenberg AR; Dussel V; Orellana L; Kang TI; Geyer JR; Feudtner C; Wolfe J
Journal Of Palliative Medicine
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0663" target="_blank" rel="noreferrer">10.1089/jpm.2013.0663</a>
Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial
Child; Female; Humans; Male; Palliative Care; Neoplasms; Treatment Outcome; Electronic Health Records; Pilot Projects; Symptom Assessment; Feedback; Intervention Studies; Sickness Impact Profile; quality of life; Preschool
Purpose This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). Patients and Methods This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2 years old with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question. In the intervention group (n = 51), oncologists and families received printed reports summarizing PROs; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded. No feedback was provided in the control group (n = 53). Primary outcomes included linear trends of MSAS, PedsQL4.0 total and subscale scores, and Sickness scores during 20 weeks of follow-up, along with child, parent, and provider satisfaction with PediQUEST feedback. Results Feedback did not significantly affect average MSAS, PedsQL4.0, or Sickness score trends. Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional (+8.1; 95% CI, 1.8 to 14.4) and Sickness (−8.2; 95% CI, −14.2 to −2.2) scores. PediQUEST reports were valued by children, parents, and providers and contributed at least sometimes to physician initiation of a psychosocial consult (56%). Conclusion Although routine feedback of PROs did not significantly affect the child’s symptoms or HRQoL, changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging. Importantly, children, parents, and providers value PRO feedback.
2014-03
Wolfe J; Orellana L; Cook EF; Ullrich CK; Kang TI; Geyer JR; Feudtner C; Weeks Jane C; Dussel V
Journal Of Clinical Oncology
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1200/JCO.2013.51.5981" target="_blank" rel="noreferrer">10.1200/JCO.2013.51.5981</a>
Differences in Parent-Provider Concordance Regarding Prognosis and Goals of Care Among Children With Advanced Cancer
Purpose Concordance between parents of children with advanced cancer and health care providers has not been described. We aimed to describe parent-provider concordance regarding prognosis and goals of care, including differences by cancer type. Patients and Methods A total of 104 pediatric patients with recurrent or refractory cancer were enrolled at three large children’s hospitals. On enrollment, their parents and providers were invited to complete a survey assessing perceived prognosis and goals of care. Patients’ survival status was retrospectively abstracted from medical records. Concordance was assessed via discrepancies in perceived prognosis, κ statistics, and McNemar’s test. Distribution of categorical variables and survival rates across cancer type were compared with Fisher’s exact and log-rank tests, respectively. Results Data were available from 77 dyads (74% of enrolled). Parent-provider agreement regarding prognosis and goals of care was poor (κ, 0.12 to 0.30). Parents were more likely to report cure was likely (P < .001). The frequency of perceived likelihood of cure and the goal of cure varied by cancer type for both parents and providers (P < .001 to .004). Relatively optimistic responses were more common among parents and providers of patients with hematologic malignancies, although there were no differences in survival. Conclusion Parent-provider concordance regarding prognosis and goals in advanced pediatric cancer is generally poor. Perceptions of prognosis and goals of care vary by cancer type. Understanding these differences may inform parent-provider communication and decision making.
2014-07
Rosenberg AR; Orellana L; Kang TI; Geyer JR; Feudtner C; Dussel V; Wolfe J
Journal Of Clinical Oncology
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1200/JCO.2014.55.4659" target="_blank" rel="noreferrer">10.1200/JCO.2014.55.4659</a>
The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life
Child; Female; Humans; Male; Physician-Patient Relations; Family; Adult; Questionnaires; Communication; Program Development; Washington; Personal Satisfaction; quality of life; adolescent; Preschool; Palliative Care/organization & administration; decision making; Neoplasms/therapy; Nervous System Diseases/therapy
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness. DESIGN: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff. RESULTS: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant. CONCLUSIONS: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.
2006
Hays RM; Valentine J; Haynes G; Geyer JR; Villareale N; McKinstry B; Varni JW; Churchill SS
Journal Of Palliative Medicine
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2006.9.716" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.716</a>
Tumor Talk and Child-Well Being: Perceptions of "good" and "bad" news among parents of children with advanced cancer
CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives. METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding 3 months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items. RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life. CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.
Feraco AM; Dussel V; Orellana L; Kang TI; Geyer JR; Rosenberg AR; Feudtner C; Wolfe J
Journal Of Pain And Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2016.11.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.11.013</a>
Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study
Neoplasms/th [therapy]; Palliative Care; Adolescent; Child; Feasibility Studies; Female; Humans; Longitudinal Studies; Male; Palliative Care/mt [methods]; Patient Dropouts; Patient Selection; Pilot Projects; Preschool; Terminal Care
CONTEXT: Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. OBJECTIVES: To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. METHODS: This was a cohort study embedded in the Pediatric Quality of Life and Evaluation of Symptoms Technology Study (NCT01838564). This multicenter PPC-RCT evaluated an electronic patient-reported outcomes system. Children aged two years and older, with advanced cancer, and potentially eligible for the study were included. Outcomes included: pre-inclusion attrition (patients not approached, refusals); post-inclusion attrition (drop-out, elimination, death, and intermittent attrition (IA; missing surveys) over nine months of follow-up); child/teenager self-report rates; and, reasons to enroll/participate. RESULTS: Over five years, of the 339 identified patients, 231 were eligible (in 22, we could not verify eligibility); 84 eligible patients were not approached and 43 declined participation. Patients not approached were more likely to die or have brain tumors. We enrolled 104 patients. Average enrollment rate was one patient per site per month; shortening follow-up from nine to three months (with optional re-enrollment) increased recruitment by 20%. A total of 87 patients completed the study (24 died) and 17 dropped out. Median IA was 41% in the first 20 weeks of follow-up and more than 60% in the eight weeks preceding death. Child/teenager self-report was 94%. Helping others, low burden procedures, incentives, and staff attitude were frequent reasons to enroll/participate. CONCLUSION: A PPC-RCT in children with advanced cancer was feasible, post-inclusion retention adequate; many families participated for altruistic reasons. Strategies that may further PPC-RCT feasibility include: increasing target population through large multicenter studies, approaching sicker patients, preventing exclusion of certain patient groups, and improving data collection at end of life. Copyright _ 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Dussel V; Orellana L; Soto N; Chen K; Ullrich C; Kang TI; Geyer JR; Feudtner C; Wolfe J
Journal Of Pain & Symptom Management
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2014.12.010" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2014.12.010</a>