RESUMO
OBJECTIVES: Adolescents and Young Adults (AYAs) with cancer experience symptoms related to disease and treatment. To manage these symptoms, they need to develop self-management behaviors, yet no tool exists to assess these behaviors. The Symptom Self-Management Behaviors Tool (SSMBT) was developed to meet this need. METHODS: The study consisted of 2 phases. Phase 1 evaluated content validity, and Phase 2 evaluated reliability and validity. The SSMBT initially contained 14 items with 2 dimensions: (1) behaviors used to Manage Symptoms and (2) behaviors used to communicate with providers regarding symptoms. Four oncology professionals and 5 AYAs with cancer assessed the content validity. Evaluation of reliability and validity involved 61 AYAs with cancer. Reliability was evaluated using Cronbach's alpha. Construct validity was assessed with factor analysis. Discriminant validity was assessed using associations with symptom severity and distress. RESULTS: Content validity evaluation supported the importance of the items. Factor analysis supported a two-factor structure: Manage Symptoms (8 items) and Communicate with Healthcare Providers (4 items) subscales. Internal consistency reliability for the total SSMBT was acceptable with Cronbach's alpha = 0.74. Cronbach's alpha value for the Manage Symptoms subscale was α = 0.69 and for the Communicate with Healthcare Providers subscale was α = 0.78. The SSMBT total and the Manage Symptoms subscale scores were moderately correlated with symptom severity (r = 0.35, p = 0.014; r = 0.44, p = 0.002, respectively), partially supporting discriminant validity. SIGNIFICANCE OF RESULTS: Systematic assessment of behaviors AYAs use is critical for clinical practice and evaluate interventions to improve self-management. The SSMBT demonstrates initial reliability and validity but requires further evaluation for clinical interpretation and future use.
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Neoplasias , Autogestão , Humanos , Adolescente , Adulto Jovem , Inquéritos e Questionários , Psicometria , Reprodutibilidade dos Testes , Neoplasias/complicações , Neoplasias/terapiaRESUMO
Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.
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Preservação da Fertilidade , Neoplasias , Adolescente , Humanos , Adulto Jovem , Austrália , Preservação da Fertilidade/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Assistência ao Paciente , Estados Unidos , AdultoRESUMO
PURPOSE OF REVIEW: We aimed to review the recent research on the childhood cancer symptom experience pertaining to socioeconomic factors, biology and genetics, growth and development, family psychosocial dynamics, and social and treating environments to begin to formulate recommendations for a personalized approach to symptom management. RECENT FINDINGS: Cancer symptoms are common and distressing in children and negatively impact child and family quality of life. Many interacting factors influence children's cancer symptoms experiences, including the assessment and management of such symptoms. This paper highlights several gaps in the research related to the cancer symptom experience including routine symptom assessment, the impact of socioeconomic, biological, and genetic factors on symptoms, and the establishment of effective symptom management partnerships with families. Based on our findings, we provide recommendations related to that research which is ready to be implemented into clinical practice and areas for needed future efforts.
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Neoplasias , Qualidade de Vida , Criança , Humanos , Neoplasias/tratamento farmacológico , Avaliação de SintomasRESUMO
BACKGROUND: The symptom experience of adolescents and young adults (AYAs) with cancer can differ based on the cancer and its treatments. A dearth of information exists on how symptoms differ by individual factors such as age and gender. OBJECTIVES: The objectives were to describe symptoms in AYAs across 5 cancer diagnostic groups by the individual factors of age group, sex, race/ethnicity, and time since diagnosis; and then to describe symptoms based on these individual factors within diagnostic groups. METHODS: This was a secondary analysis of baseline data pooled from 2 multisite studies on symptoms in AYAs with acute lymphoblastic leukemia, brain cancer, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcoma. Symptoms were assessed using the Computerized Symptom Capture Tool. RESULTS: Data from 118 AYAs with cancer, aged 13 to 29 years, were analyzed. Eight of the most commonly reported symptoms were reported in at least 4 diagnostic groups. Across diagnostic groups, symptoms varied little based on individual factors. Within groups, certain symptoms differed in frequency by individual factors. CONCLUSIONS: The lack of major differences in symptom prevalence based on individual factors across diagnostic groups supports a heterogeneous approach to symptom research with AYAs. The study identified individual factors within diagnostic groups worthy of further exploration. IMPLICATIONS FOR PRACTICE: Providers can facilitate discussions with AYAs about symptoms by being aware of common symptoms that may occur in certain cancer diagnostic groups and based on individual factors. The significance of the individual symptom experience should not be underestimated, emphasizing the importance of person-centered symptom assessment.
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Neoplasias , Leucemia-Linfoma Linfoblástico de Células Precursoras , Adolescente , Humanos , Neoplasias/complicações , Neoplasias/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Avaliação de Sintomas , Adulto JovemRESUMO
OBJECTIVES: Discuss the clinical assessment and management of symptoms for children and adolescents receiving treatment for cancer with attention to a person-centered approach to care. DATA SOURCES: Review of currently published literature and guidelines pertaining to symptom assessment and management for children and adolescents receiving treatment for cancer. CONCLUSION: Symptoms such as pain, nausea, and fatigue are commonly reported by children and adolescents receiving cancer treatment and are associated with greater symptom burden. Symptom assessment should be tailored to the child or adolescent and include the child's or adolescent's preference for reporting symptoms and attention to the symptoms that are of greatest priority. Evidence-based guidelines for the management of symptoms, including pain and nausea, are available to guide symptom management interventions and should be tailored to provide person-centered care. IMPLICATIONS FOR NURSING PRACTICE: Nurses can lead efforts through clinical practice and research initiatives to advance person-centered symptom care for children and adolescents with cancer on a global level. Priorities for future work to advance person-centered symptom assessment and management include (1) identification of best practices for symptom assessment, (2) attention to social determinants of health and their subsequent influence on symptom outcomes, (3) compilation of evidence for management of less commonly reported symptoms, and (4) implementation of published clinical guidelines for symptom management in practice settings.
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Fadiga , Neoplasias , Adolescente , Criança , Fadiga/diagnóstico , Fadiga/etiologia , Fadiga/terapia , Humanos , Náusea/diagnóstico , Náusea/terapia , Neoplasias/terapia , Dor , Avaliação de SintomasRESUMO
PURPOSE: Most of the 77,000 adolescents and young adults (AYAs) 15-39 years of age diagnosed with cancer annually in the United States are treated at community rather than academic centers. Little is known about their healthcare experience. METHODS: A cross-sectional, anonymous, online survey was conducted with a convenience sample of AYAs treated for cancer at US academic (n = 112) or community centers (n = 64). RESULTS: Clinical trials were offered more frequently to respondents treated at academic centers (26.8% v 7.8%; P = .005). Eighty percent of all those offered a clinical trial chose to enroll. Over three-fourths reported awareness of community-based or online AYA oncology support services; however, significantly more respondents from academic centers reported awareness of services provided by the institution itself (40.2% v 7.8%; P < .001). Significantly more respondents from academic centers reported receiving information relevant to their age group (41.1% v 15.6%; P < .001). Respondents treated at academic centers were significantly more satisfied with support, communication, and overall treatment. Odds of respondents treated at an academic center reporting that their healthcare team knew enough about AYAs were 3.12-fold higher than those treated at community centers (95% CI, 1.6 to 6.4; P = .002). Odds of overall satisfaction were significantly higher for respondents who reported that their healthcare team "knew enough about AYAs" (aOR, 9.7, 95% CI, 2.4 to 53.9; P = .003). CONCLUSION: Cancer treatment for AYAs at both academic and community centers can be optimized by improving healthcare providers' understanding of the key issues facing AYAs with cancer and by increasing AYA-specific institutional resources and support services.
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Neoplasias , Adolescente , Adulto , Comunicação , Estudos Transversais , Atenção à Saúde , Humanos , Neoplasias/terapia , Estados Unidos , Adulto JovemRESUMO
Purpose: The study used a cross-sectional descriptive design to explore the prevalence and correlates of religious/spiritual (R/S) coping and struggle in young adults (YAs) during the first 2 months of cancer treatment. Methods: Self-report measures of R/S coping, R/S struggle, depression, quality of life (QoL), intensity of treatment experience, and spiritual/religious identification and practices were obtained using REDCap Survey. Self-report of selected demographic characteristics (age, ethnicity, race, gender, education, occupational status, marital status, parental status, and cancer diagnosis) was also obtained. Results: The prevalence of positive R/S coping was high and higher compared with negative R/S coping. Female gender was associated with more R/S struggle, lower QoL, and higher depression. The Religious and Spiritual Struggles Scale and both the negative and positive R/S coping scale of the Brief RCOPE were significantly positively correlated, despite focusing on differing types of spiritual struggle/distress. Conclusions: Both positive R/S coping and R/S struggle occur in YAs during the first 2 months of cancer treatment. Further research to elucidate the experiences of YAs with cancer, and interventions to promote effective coping, will promote holistic cancer care for this population.
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Neoplasias , Qualidade de Vida , Adaptação Psicológica , Estudos Transversais , Feminino , Humanos , Masculino , Neoplasias/terapia , Espiritualidade , Adulto JovemRESUMO
Introduction: Participation on a collaborative team is an attractive option for conducting research, especially in pediatric hematology/oncology nursing, where the patient population is small. The Consortium to Study Symptoms in Adolescents and Young Adults with Cancer (CS2AYAC) is a nursing research team that has been in existence for over a decade. Purpose: The authors share the process by which CS2AYAC formed and describe key features that contribute to its sustainability. Results: While the team developed organically rather than via the tenets of team science, key aspects of success include principles related to mentorship, communication, building trust, establishing shared goals, and managing conflict. Conclusions: This description of one team's experience may help other nurses build their own teams for research. Strong, collaborative research teams will advance pediatric hematology/oncology nursing science and scholarship and can be an important source of collegiality and support.
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Oncologia/organização & administração , Neoplasias/enfermagem , Pesquisa em Enfermagem/organização & administração , Equipe de Enfermagem/organização & administração , Enfermagem Oncológica/organização & administração , Adolescente , Adulto , Humanos , Pessoa de Meia-Idade , Estados Unidos , Adulto JovemRESUMO
Purpose: This study examined health care providers' perceptions of the usefulness and ease of use of a symptom heuristics app delivered via a tablet computer as a resource for understanding symptom experiences of adolescents and young adults (AYAs) with cancer. AYAs' app-generated symptom reports were compared with providers' documentation of AYAs' symptoms. Methods: This multisite study included responses from 86 AYAs 15-29 years of age who completed the Computerized Symptom Capture Tool (C-SCAT) before two scheduled visits for chemotherapy. After each visit, their providers completed a survey addressing their perspective of: (1) the usefulness of data provided by the C-SCAT to understand the AYAs' symptom experience, and (2) the nature of the discussion of symptoms with the AYA. An electronic health record review compared symptoms that AYAs identified by using the C-SCAT with providers' documentation of symptoms. Results: One hundred forty-four complete surveys were returned after 162 visits. Fifty percent (n = 72) of responses reported that the C-SCAT helped identify the patient's symptoms, and 53% (n = 76) reported that it helped identify the patient's priority symptoms. Providers also reported higher patient engagement and more focused discussions regarding symptoms. They reported that use of the C-SCAT facilitated the development of symptom management plans. Priority symptoms were documented more frequently than nonpriority symptoms (54% vs. 32.7%; p < 0.01) as was a plan for managing priority symptoms (33.7% vs. 17.9%; p < 0.01). Conclusion: Use of the C-SCAT enhanced providers' understanding of AYAs' symptom experiences. Further research is needed to demonstrate the effectiveness of the C-SCAT as a resource to improve symptom management among AYAs with cancer.
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Heurística/fisiologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Percepção , Adulto JovemRESUMO
Purpose: Young adults (YAs) are at greater risk for cancer-related financial toxicity than other age groups. They are simultaneously dealing with cancer and normative developmental tasks (establishing independence, completing education, and beginning careers) and may go without needed medications, follow-up, and even food or housing because of cancer-related financial toxicity. This study explored the financial resources required for YAs to move forward after cancer treatment. Methods: To identify and describe the financial challenges experienced by YA cancer survivors and the impact on their lives and overall development, we used secondary analysis of essays written by Samfund grant recipients. Directed content analysis allowed identification of salient categories from the essays of 104 YAs aged 17-39 years who received financial assistance between 2012 and 2013. Permission was secured before analysis. Results: To move forward after cancer treatment, YAs state that they require enough financial resources to meet immediate needs, support future goals, facilitate self-care, and enable normative development. Conclusions: Assessing the financial status of YAs with cancer is vital because many YAs lack resources to fund their basic needs and to move forward with independent living after cancer therapy. Interventions to identify and mitigate financial toxicity in YAs have the potential to reduce treatment nonadherence and poor follow-up due to insufficient financial resources in this at-risk population.
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Sobreviventes de Câncer/estatística & dados numéricos , Apoio Financeiro , Neoplasias/economia , Adolescente , Adulto , Feminino , Humanos , Masculino , Qualidade de Vida , Adulto JovemRESUMO
CONTEXT: Cancer and symptom experiences of adolescents and young adults (AYAs) with cancer can be highly variable, creating challenges for clinicians and researchers who seek to optimize AYAs' health outcomes. Understanding the heuristics AYAs use to designate priority symptoms can provide insight into the meaning they assign to their symptoms and self-management behaviors. OBJECTIVES: This study described the frequency and characteristics of priority symptoms. It qualitatively explored reasons for a symptom's designation as a priority symptom, perceived causes of priority symptoms, and strategies AYAs use to manage priority symptoms. METHODS: Participants in this single-group, longitudinal study reported symptoms using a heuristics-based symptom reporting tool, the Computerized Symptom Capture Tool, at two scheduled visits for chemotherapy. AYAs designated priority symptoms and responded to three short answer questions: What makes this a priority symptom?, What do you think causes it?, and What do you do to make it better? RESULTS: Eighty-six AYAs, 15-29 years of age (median 19 years), identified 189 priority symptoms. Priority symptoms were of greater severity (t = 3.43; P < 0.01) and distress (t = 4.02; P < 0.01) compared with nonpriority symptoms. Lack of energy, nausea, difficulty sleeping, and pain comprised 39% of priority symptoms. Reasons for priority designation included the impact of the symptom and the attributes of the symptom. Categories of self-management strategies included "Physical Care Strategies," "Things I take (or not)," and "Psychosocial Care Strategies." CONCLUSION: Supporting AYAs to identify their priority symptoms may facilitate a more personalized approach to care. Seeking the patient's perspective regarding priority symptoms could enhance patient-clinician collaboration in symptom management.
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Neoplasias/terapia , Qualidade de Vida/psicologia , Autogestão , Adolescente , Adulto , Feminino , Humanos , Estudos Longitudinais , Masculino , Neoplasias/psicologia , Avaliação de Sintomas , Adulto JovemRESUMO
PURPOSE: Adolescents and young adults (AYAs) with cancer need self-management strategies to cope with multiple symptoms. Self-efficacy, self-regulation, and negotiated collaboration are key theoretical components of the self-management process and have not been fully explored with AYAs with cancer. This study examined the effects of a heuristic symptom assessment tool on AYAs' self-efficacy for symptom management, AYAs' self-regulation abilities related to their symptoms, and communication with their providers about symptoms. METHODS: AYAs (15-29 years of age) receiving chemotherapy used the Computerized Symptom Capture Assessment Tool (C-SCAT) to illustrate their symptom experience and discuss their symptoms with providers during two clinic visits. Participants completed the PROMIS Self-efficacy for Managing Symptoms Scale, a measure of satisfaction with provider communication, and a short interview about self-regulation and communication behaviors at baseline and after each provider visit. RESULTS: Eighty-five AYAs who used the C-SCAT showed improved self-efficacy for managing symptoms. Qualitative data suggest that the C-SCAT was useful for enhancing a number of AYAs' self-regulation abilities related to symptom management, such as awareness and recall of symptoms, how symptoms were related, and how they planned to talk about their symptoms to providers. AYAs reported C-SCAT facilitated communication with providers about symptoms and symptom management because it was a visual prompt showing priority and related symptoms. CONCLUSIONS: Because AYAs continue to experience multiple distressing symptoms, symptom self-management remains an important area for practice and research. Use of heuristic tools, such as the C-SCAT, may help AYAs more effectively self-manage their symptoms for better health outcomes.
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Computadores de Mão/estatística & dados numéricos , Pessoal de Saúde/psicologia , Heurística , Neoplasias/tratamento farmacológico , Autoeficácia , Autogestão/estatística & dados numéricos , Avaliação de Sintomas/instrumentação , Adolescente , Adulto , Comunicação , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Neoplasias/psicologia , Cuidados Paliativos , Relações Médico-Paciente , Prognóstico , Autogestão/psicologia , Adulto JovemRESUMO
PURPOSE: This study evaluated oral medication adherence among adolescents and young adults (AYAs) with cancer during a trial of a smartphone-based medication reminder application (app). METHODS: Twenty-three AYAs receiving at least one prescribed, scheduled oral medication related to their outpatient cancer treatment participated in this 12-week single-group interrupted time series longitudinal design study. Baseline oral medication adherence was monitored using electronic monitoring caps for 4 weeks. Participants then used a medication reminder app and continued to have their oral medication adherence monitored for 8 weeks. Participants completed an electronically administered weekly survey addressing perceived adherence and reasons for nonadherence. RESULTS: Four adherence phenotypes were identified using visual graphical analysis of individual participants' weekly adherence: (1) high adherence during the preintervention and intervention periods (n = 13), (2) low preintervention adherence and improved adherence during the intervention period (n = 3), (3) low adherence during both periods (n = 6), and (4) high preintervention adherence and low adherence during the intervention period (n = 1). Growth curve models did not show significant changes in adherence by preintervention versus intervention trajectories (p > 0.05); however, the variance in adherence during the intervention narrowed for more highly adherent AYAs. "Forgetfulness" was the most frequently reported reason for nonadherence. CONCLUSION: Although overall adherence did not improve following use of the app, the variance decreased for more highly adherent participants. Additional or alternative interventions are needed for AYAs with persistently poor adherence. Assessment of adherence patterns may support individualized recommendation of tailored interventions.
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Antineoplásicos/administração & dosagem , Adesão à Medicação/estatística & dados numéricos , Neoplasias/tratamento farmacológico , Sistemas de Alerta/instrumentação , Smartphone/estatística & dados numéricos , Acesso à Informação , Administração Oral , Adolescente , Adulto , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Prognóstico , Inquéritos e Questionários , Adulto JovemRESUMO
PURPOSE: Adolescents and young adults (AYAs) with cancer experience multiple symptoms related to their cancer and its treatment which can negatively impact their development and quality of life. An understanding of the strategies AYAs use to self-manage their symptoms is limited. This study described symptom self-management strategies reported by AYAs with cancer using an iPad-based symptom heuristics tool, the Computerized Symptom Capture Tool. METHODS: The study used a cross-sectional, descriptive design. AYAs' free text responses relating their symptom self-management strategies were explored using qualitative content analysis procedures. Strategies were examined overall and by individual symptoms. RESULTS: Seventy-two AYAs 13-29 years of age (mean 18.4 years) reported a total of 772 symptom self-management codes for 585 individual symptoms. These codes were organized into 119 distinct categories. These categories were further organized into 16 subthemes and 3 overarching themes: "Things I Take or Not" (n = 209 codes), "Physical Care Things I Do" (n = 367 codes), and "Psychosocial Care Things I Do" (n = 132 codes). AYAs frequently reported strategies from all three of the symptom self-management themes to manage individual symptoms; however, "medications" was the most frequently reported strategy. CONCLUSION: AYAs receiving chemotherapy use multiple common, yet uniquely individual symptom self-management strategies. AYAs' reported strategies range from those that involve shared management with a healthcare provider to those that AYAs implement independently. The study provides a foundation for future research to empower AYAs to engage in symptom self-management and to guide healthcare providers as they discuss developmentally relevant and evidence-based symptom self-management strategies.
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Neoplasias/terapia , Autogestão/métodos , Adolescente , Adulto , Computadores de Mão , Estudos Transversais , Feminino , Humanos , Masculino , Aplicativos Móveis , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Cuidados Paliativos/métodos , Qualidade de Vida , Adulto JovemRESUMO
This study assessed the feasibility of studying animal-assisted activities (AAA) in inpatient pediatric oncology and collected preliminary data on potential benefits of AAA for this population. Patients at a large pediatric hospital were identified using electronic medical records and approached with physician approval. Patients completed surveys before and after a therapy dog visit in their private hospital room. Data on infections were ascertained by electronic medical record review. Provider surveys were placed in provider common areas and distributed through a link in an e-mail. We summarized resultsusing descriptive statistics and estimated mean changes in pre- and postintervention distress and conducted hypothesis tests using the paired t test. The study population (mean age = 12.9 years) consisted of 9 females and 10 males. Following the therapy dog visit, patients had lower distress and significant decreases in worry, tiredness, fear, sadness, and pain. Providers were generally supportive of the intervention. Eight patients developed infections during the 14 days after the dog visit but none could be clearly attributed to the therapy dog visit. The study's primary limitation was that there was no control group. However, results support the feasibility of and need for future studies on AAA in pediatric oncology.
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Terapia Assistida com Animais , Criança Hospitalizada/psicologia , Neoplasias/psicologia , Satisfação do Paciente , Adolescente , Animais , Criança , Cães , Feminino , Hospitais Pediátricos , Humanos , Masculino , Neoplasias/enfermagem , Neoplasias/terapia , Enfermagem Pediátrica , Projetos Piloto , WashingtonRESUMO
BACKGROUND: Pediatric participants on phase 1 or phase 2 clinical trials for incurable cancer are at risk of experiencing toxicities (adverse events [AEs]) related to trial participation. Multiple AEs are subjective; thus, the real impact of trial treatment cannot be known unless patient subjective reports are solicited. METHODS: The authors assessed the feasibility and acceptability of soliciting symptom, function, and quality of life (QOL) reports from participants aged 8 to 18 years who were enrolled on phase 1/2 clinical trials at 4 cancer centers during the first course of chemotherapy. The authors also assessed the reliability and validity of 6 self-report Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric measures and 4 open-ended interview questions at 2 time points (at the time of trial enrollment [T1] and 3 to 4 weeks later [T2]). RESULTS: The enrollment rate of 75.9% (20 participants) exceeded the feasibility criterion, and missingness of measures by person, measure, and items at T1 and T2 were lower than the acceptability criteria. New QOL themes were limited to the impact of treatment on families and being away from home, family, and friends for treatment. All but one measure at T1 met the reliability criterion and all measures did so at T2. Validity support was limited however because as theorized, mobility decreased and fatigue increased as AEs increased. CONCLUSIONS: Soliciting and documenting symptom, function, and QOL reports from patients aged 8 to 18 years who are enrolled on a phase 1/2 clinical trial is feasible and acceptable to participants, particularly when embedded in trials. Reliable and valid findings can result, making patient self-reported outcomes a possible new trial endpoint. Cancer 2017;123:3799-3806. © 2017 American Cancer Society.
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Antineoplásicos/efeitos adversos , Ensaios Clínicos Fase I como Assunto , Ensaios Clínicos Fase II como Assunto , Fadiga/induzido quimicamente , Limitação da Mobilidade , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Avaliação de Sintomas/métodos , Adolescente , Criança , Família , Estudos de Viabilidade , Feminino , Humanos , Estudos Longitudinais , Masculino , Neoplasias/tratamento farmacológico , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
A case of a young adult patient in the days immediately after a cancer diagnosis illustrates the critical importance of three interrelated core coordinating mechanisms-closed-loop communication, shared mental models, and mutual trust-of teamwork in an adolescent and young adult multidisciplinary oncology team. The case illustrates both the opportunities to increase team member coordination and the problems that can occur when coordination breaks down. A model for teamwork is presented, which highlights the relationships among these coordinating mechanisms and demonstrates how balance among them works to optimize team function and patient care. Implications for clinical practice and research suggested by the case are presented.
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Equipe de Assistência ao Paciente/organização & administração , Leucemia-Linfoma Linfoblástico de Células Precursoras B/tratamento farmacológico , Adolescente , Adulto , Comunicação , Comportamento Cooperativo , Humanos , Relações Interprofissionais , Masculino , Confiança , Adulto JovemRESUMO
We compared adolescent and young adult cancer patient and survivor language between mediated and face-to-face support communities in order to understand how the use of certain words frame conversations about family, friends, health, work, achievement, and leisure. We analyzed transcripts from an online discussion board ( N = 360) and face-to-face support group ( N = 569) for adolescent and young adults using Linguistic Inquiry and Word Count, a word-based computerized text analysis software that counts the frequency of words and word stems. There were significant differences between the online and face-to-face support groups in terms of content (e.g. friends, health) and style words (e.g. verb tense, negative emotion, and cognitive process).
RESUMO
PURPOSE: To evaluate feasibility, including usability and utility, of the Computerized Symptom Capture Tool for Menopause (C-SCAT-M), a symptom heuristics application (app) for the iPad, with midlife women. METHODS: Thirty midlife women aged 40-60 and experiencing symptoms they associated with menopause were recruited through flyers posted on a university campus, primary care and women's health clinics. The C-SCAT-M guided participants to identify symptoms they experienced, draw temporal and causal relationships between symptoms and identify symptom clusters. Women were encouraged to think aloud as they encountered questions or problems and their comments were audio recorded. After completing the C-SCAT-M, they completed a 22-item acceptability survey and a demographic survey. Data were downloaded from catalyst website and analyzed using SPSS. RESULTS: Women completed the C-SCAT-M with minimal difficulty, with most indicating that using the app was very/extremely easy and most (57%) preferred using the iPad app to paper. Most women stated that the final diagrams were very/extremely accurate depictions of their symptom clusters and relationships (77%). CONCLUSION: The C-SCAT-M demonstrated initial feasibility, including usability and utility, for collecting data about symptom clusters experienced by midlife women.
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Computadores de Mão , Menopausa/fisiologia , Aplicativos Móveis , Projetos de Pesquisa , Saúde da Mulher , Adulto , Estudos de Viabilidade , Feminino , Heurística , Humanos , Pessoa de Meia-Idade , Fatores de Tempo , Interface Usuário-ComputadorRESUMO
PURPOSE: Finding helpful information can be challenging for young adult (YA) cancer survivors; thus, it is critical to examine features of online posts that successfully solicit responses and assess how these differ from posts that do not solicit responses. METHODS: Using posts from an online YA cancer support community, we analyzed initial posts that did and did not receive replies utilizing Linguistic Inquiry Word Count (LIWC). RESULTS: Independent t tests revealed significant differences between the sets of posts regarding content, emotions, cognitive processes, pronoun use, and linguistic complexity. More specifically, posts with replies contained fewer words per sentence, had more first-person pronouns, had more expressions of negative emotions, and contained more present tense and past tense verbs. CONCLUSIONS: The findings of this study can help improve peer-exchanged support in online communities so that YA cancer survivors can more effectively receive digital support. This research also provides communication researchers, health educators, and care providers a lens for understanding the YA cancer survivorship experience. IMPLICATIONS FOR CANCER SURVIVORS: This research helps survivors be strategic in how they use online forums to seek advice and support. More complete understanding of what kinds of prompts produce responses allows those in need to craft messages in ways that are most likely to elicit support from fellow cancer survivors. These implications for message design extend beyond blogging and can be applicable for text message and email exchanges between cancer patients and their care providers.