ABSTRACT
OBJECTIVE: to document adolescents' understanding of chemotherapy-related core adverse events from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events and thus begin the validation process of this tool's items with Brazilian adolescents. METHOD: this is a prospective, qualitative study of concept elicitation. The participants were 17 adolescents aged 13-18 years and undergoing chemotherapy in three hospitals in São Paulo - SP, Brazil. Cognitive interviews were conducted with questions based on chemotherapy-related adverse events. Data were analyzed for responsiveness and missingness. RESULTS: adolescents could and were willing to provide descriptive information about their chemotherapy adverse events, including physical and emotional events. Some participants suggested alternative terms to name the adverse events and some used more complex terms, but most were satisfied with the primary terms used by the researchers. CONCLUSION: this study represents the first steps towards understanding how adolescent cancer patients identify, name, and describe these events by cognitive interviewing to help design future assessment instruments focused on this age group. KEYPOINTS: (1) Adolescents' voice is a priority in reporting chemotherapy-related adverse events. (2) Adverse events (AEs) inquiry may best be initiated with open-ended questions. (3) Elicitation studies can include the voices of the target population. (4) Adolescents with cancer can self-report clinically relevant chemotherapy AEs.
Subject(s)
Neoplasms , Patient Reported Outcome Measures , Adolescent , Humans , Child , Prospective Studies , Brazil , Self Report , Neoplasms/drug therapy , Neoplasms/psychologyABSTRACT
OBJECTIVES: To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs. STUDY DESIGN: Participants (8-24 years old) and their parents were enrolled into 14 studies that evaluated Patient-Reported Outcome Measurement Information System PROs across 10 chronic conditions-asthma, atopic dermatitis, cancer, cancer survivors, chronic kidney disease, Crohn's disease, juvenile idiopathic arthritis, lupus, sickle cell disease, and type 1 diabetes mellitus. PRO scores were contrasted with the US general population of children using nationally representative percentiles. PRO-specific coefficients of variation were computed to illustrate the degree of variation in scores within vs between conditions. Condition-specific measures of disease severity and Cohen d effect sizes were used to examine PRO scores by disease activity. RESULTS: Participants included 2975 child respondents and 2392 parent respondents who provided data for 3409 unique children: 52% were 5-12 years old, 52% female, 25% African American/Black, and 14% Hispanic. Across all 10 chronic conditions, children reported more anxiety, fatigue, pain, and mobility restrictions than the general pediatric population. Variation in PRO scores within chronic disease cohorts was equivalent to variation within the general population, exceeding between-cohort variation by factors of 1.9 (mobility) to 5.7 (anxiety). Disease activity was consistently associated with poorer self-reported health, and these effects were weakest for peer relationships. CONCLUSIONS: Chronic conditions are associated with symptoms and functional status in children and adolescents across 10 different disorders. These findings highlight the need to complement conventional clinical evaluations with those obtained directly from patients themselves using PROs.
Subject(s)
Asthma , Patient Reported Outcome Measures , Adolescent , Adult , Anxiety , Asthma/complications , Child , Child, Preschool , Chronic Disease , Fatigue/complications , Female , Humans , Male , Quality of Life , Self Report , Young AdultABSTRACT
Abstract Objective: to document adolescents' understanding of chemotherapy-related core adverse events from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events and thus begin the validation process of this tool's items with Brazilian adolescents. Method: this is a prospective, qualitative study of concept elicitation. The participants were 17 adolescents aged 13-18 years and undergoing chemotherapy in three hospitals in São Paulo - SP, Brazil. Cognitive interviews were conducted with questions based on chemotherapy-related adverse events. Data were analyzed for responsiveness and missingness. Results: adolescents could and were willing to provide descriptive information about their chemotherapy adverse events, including physical and emotional events. Some participants suggested alternative terms to name the adverse events and some used more complex terms, but most were satisfied with the primary terms used by the researchers. Conclusion: this study represents the first steps towards understanding how adolescent cancer patients identify, name, and describe these events by cognitive interviewing to help design future assessment instruments focused on this age group.
Resumo Objetivo: documentar a compreensão dos adolescentes sobre os principais eventos adversos relacionados à quimioterapia a partir da versão Pediátrica dos Desfechos Relatados pelo Paciente (Patient-Reported Outcomes) dos Critérios de Terminologia Comum para Eventos Adversos (Common Terminology Criteria for Adverse Events), e assim iniciar o processo de validação dos itens desta ferramenta com adolescentes brasileiros. Método: trata-se de um estudo prospectivo, qualitativo, de elicitação de conceitos. Participaram do estudo 17 adolescentes de 13 a 18 anos, submetidos à quimioterapia em três hospitais da cidade de São Paulo-SP, Brasil. Foram realizadas entrevistas cognitivas com perguntas baseadas em eventos adversos relacionados à quimioterapia. Os dados foram analisados quanto à responsividade e ausência de resposta. Resultados: os adolescentes puderam e estavam dispostos a fornecer informações descritivas sobre seus eventos adversos quimioterápicos, incluindo eventos físicos e emocionais. Alguns participantes sugeriram nomes alternativos para os eventos adversos e alguns usaram termos mais complexos, mas a maioria ficou satisfeita com aqueles utilizados pelos pesquisadores. Conclusão: este estudo representa os primeiros passos para entender como os adolescentes com câncer identificam, nomeiam e descrevem esses eventos por meio de entrevistas cognitivas para ajudar a criar futuros instrumentos de avaliação focados nessa faixa etária.
Resumen Objetivo: documentar la comprensión de los adolescentes de los principales eventos adversos relacionados con la quimioterapia a partir de la versión de los Criterios Terminológicos Comunes para Eventos Adversos reportados por los pacientes pediátricos y así iniciar el proceso de validación de los ítems de esta herramienta con adolescentes brasileños. Método: este es un estudio prospectivo y cualitativo de elicitación de conceptos. Los participantes fueron 17 adolescentes de entre 13 y 18 años de edad que recibían quimioterapia en tres hospitales de São Paulo-SP, Brasil. Se realizaron entrevistas cognitivas con preguntas basadas en eventos adversos relacionados con la quimioterapia. Los datos se analizaron en función de la presencia y ausencia de respuesta. Resultados: los adolescentes podían y estaban dispuestos a proporcionar información descriptiva sobre los efectos adversos de la quimioterapia, incluidos los físicos y emocionales. Algunos participantes sugirieron términos alternativos para denominar los eventos adversos y otros utilizaron términos más complejos, pero la mayoría se mostró satisfecha con los términos principales utilizados por los investigadores. Conclusión: este estudio representa los primeros pasos hacia la comprensión de cómo los pacientes adolescentes con cáncer identifican, nombran y describen estos eventos mediante entrevistas cognitivas para ayudar a diseñar futuros instrumentos de evaluación centrados en este grupo de edad.
Subject(s)
Humans , Child , Adolescent , Brazil , Prospective Studies , Self Report , Patient Reported Outcome Measures , Neoplasms/psychology , Neoplasms/drug therapyABSTRACT
Symptom management knowledge is a priority for pediatric oncology nursing research. Theories and models can frame the studies of symptoms experienced during childhood cancer. This article describes and analyzes the middle-range theory, theory of unpleasant symptoms (TOUS), for its conceptual and empirical fit with pediatric oncology nursing based on its current use in adult oncology research and its limited use to date in pediatric oncology. Searches in PubMed and CINAHL databases using the keywords theory of unpleasant symptoms and cancer and covering the time period 2000 to 2017 yielded 103 abstracts for review. Twenty published reports met eligibility criteria for review; only one included pediatric oncology patients. No study to date has tested all the components of the TOUS in pediatrics. The TOUS component of performance appears to be underaddressed across completed studies that instead include a focus on patient-reported quality of life rather than on perceived behavioral or performance indicators concurrent with the subjective symptom reports. Additionally, the influence of family, essential in pediatric oncology, is absent in the majority of studies guided by the TOUS. The TOUS is a structurally complicated framework that would be a conceptual fit for pediatric oncology if family influence and perceived function were included. Studies across this population and guided by the TOUS are needed, although testing all the theorized linkages in the TOUS would likely require a large sample size of patients and, thereby, multisite approaches given that cancer is a rare disease in childhood.
Subject(s)
Neoplasms/nursing , Neoplasms/psychology , Oncology Nursing , Palliative Care/psychology , Pediatric Nursing , Quality of Life/psychology , Adult , Child , Female , Humans , Male , Nursing Research , Nursing TheoryABSTRACT
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.
Subject(s)
Bone Neoplasms , Osteosarcoma , Adolescent , Adult , Bone Neoplasms/mortality , Bone Neoplasms/psychology , Bone Neoplasms/therapy , Child , Child, Preschool , Chile , Female , Health Resources , Humans , Male , Osteosarcoma/mortality , Osteosarcoma/psychology , Osteosarcoma/therapy , Quality of Life , Treatment Outcome , United States , Young AdultABSTRACT
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
Subject(s)
Palliative Care , Pediatrics , Research , Attitude of Health Personnel , Delphi Technique , Humans , Parents/psychology , United StatesABSTRACT
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.
Subject(s)
Attitude , Autopsy , Bereavement , Biomedical Research , Brain Neoplasms/pathology , Intention , Parents/psychology , Child , Humans , Prospective StudiesABSTRACT
OBJECTIVES: To provide practice guidelines to assist patients and parents in coping with a return of disease. DATA SOURCES: Delphi studies, review, and research articles. CONCLUSIONS: When a child's cancer recurs, the patient and parents are at risk of physical and psychologic difficulties. Guidelines to assist patients and parents to cope have shown positive response. IMPLICATIONS FOR NURSING PRACTICE: Practice guidelines to assist patients and parents cope with a return of cancer can help health care professionals develop interventions for particular families.