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1.
Psychooncology ; 33(3): e6313, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38446532

RESUMO

OBJECTIVE: Support people of cancer patients are at significant risk for psychological distress. Additionally, cancer patients' well-being is reciprocally associated with support peoples' psychological well-being. Informed by Uncertainty in Illness Theory, this study tests whether support person psychological well-being is influenced by provider communication and uncertainty reduction. METHODS: We tested a multiple mediation model to investigate how empathic communication facilitates psychological adjustment in support people of cancer patients and how this process is mediated by support peoples' illness uncertainty and caregiver burden. Support people of cancer patients (N = 121; including spouses, adult children, etc.) completed an online questionnaire about their perceptions of oncologists' empathy, uncertainty about the cancer patients' illness, perceived caregiving burden, and their psychological adjustment to diagnoses. RESULTS: Path analysis revealed that (1) more perceived oncologist empathy was associated with less illness uncertainty, (2) more illness uncertainty was associated with worse psychological adjustment and more perceived caregiver burden, and (3) more burden was associated with worse adjustment (χ2 (2) = 1.19, p = 0.55; RMSEA < 0.01; CFI = 1.00; SRMR = 0.02). CONCLUSIONS: Given the reciprocal nature of well-being between cancer patients and their support people, it is critical to understand and bolster support people's psychological well-being. Results demonstrated how empathic provider communication can support psychological well-being for support people of cancer patients. Additionally, this study offers theoretical contributions to understandings of illness uncertainty in caregiver populations.


Assuntos
Neoplasias , Oncologistas , Adulto , Humanos , Ajustamento Emocional , Incerteza , Filhos Adultos
2.
Health Commun ; 39(5): 876-887, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-36941532

RESUMO

Cancer patients often attend medical interactions with at least one companion. The degree to which companions participate varies, ranging from passive observer to active advocate. However, the structure of the medical interaction often promotes dyadic rather than triadic communication, creating ambiguity about to the degree to which companions can and should participate. Participants (N = 34, 16 dyads) included gynecologic cancer patients who were undergoing chemotherapy treatment (n = 18) and their companions (n = 16); all participants were separately interviewed. Interviews included discussion of dyadic communication patterns within medical interactions. The normative rhetorical theory (Goldsmith, 2019) was applied as a guiding framework. Patients discussed the dilemma they experience when companions are expected but absent. Patients and companions provided positive reports of companion communication when behavior aligned with expectations. Alternatively, patients and companions experience dilemmas when companions participate more than or differently from how patients and/or companions had expected. Companions provided one strategy for managing the dilemma of how to participate in medical interactions. Implications and limitations are discussed.


Assuntos
Neoplasias , Relações Médico-Paciente , Humanos , Feminino , Motivação , Relações Profissional-Família , Comunicação , Amigos
3.
Artigo em Inglês | MEDLINE | ID: mdl-38491206

RESUMO

Bright IDEAS-Young Adults (Bright IDEAS-YA) is a problem-solving skills training intervention that has been adapted for young adults with cancer. Presently, a multisite randomized control trial is being conducted to determine Bright IDEAS-YA's efficacy in supporting a young adult population. This case study demonstrates the young adult adaptation of Bright IDEAS - Bright IDEAS-YA - being delivered to a young adult cancer patient via telehealth. Telehealth is a novel delivery method for Bright IDEAS and Bright IDEAS-YA that was established due to COVID-19 safety precautions. The patient, who reported challenges in several life domains, was taught how to apply the Bright IDEAS-YA framework over six telehealth sessions. After completing the Bright IDEAS-YA framework, the patient reported increased feelings of confidence in managing new stressors, which was corroborated through outcome measures delivered during and following intervention. This case illustrates how early psychosocial intervention following a cancer diagnosis, delivered via telehealth, can help patients develop and implement personal strategies to reduce stress levels.

4.
Pediatr Blood Cancer ; 70 Suppl 6: e30557, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37430416

RESUMO

As survival rates for childhood cancer have improved, there has been increasing focus on identifying and addressing adverse impacts of cancer and its treatment on children and their families during treatment and into survivorship. The Behavioral Science Committee (BSC) of the Children's Oncology Group (COG), comprised of psychologists, neuropsychologists, social workers, nurses, physicians, and clinical research associates, aims to improve the lives of children with cancer and their families through research and dissemination of empirically supported knowledge. Key achievements of the BSC include enhanced interprofessional collaboration through integration of liaisons into other key committees within COG, successful measurement of critical neurocognitive outcomes through standardized neurocognitive assessment strategies, contributions to evidence-based guidelines, and optimization of patient-reported outcome measurement. The collection of neurocognitive and behavioral data continues to be an essential function of the BSC, in the context of therapeutic trials that are modifying treatments to maximize event-free survival, minimize adverse outcomes, and optimize quality of life. In addition, through hypothesis-driven research and multidisciplinary collaborations, the BSC will also begin to prioritize initiatives to expand the systematic collection of predictive factors (e.g., social determinants of health) and psychosocial outcomes, with overarching goals of addressing health inequities in cancer care and outcomes, and promoting evidence-based interventions to improve outcomes for all children, adolescents, and young adults with cancer.


Assuntos
Ciências do Comportamento , Neoplasias , Adolescente , Adulto Jovem , Criança , Humanos , Qualidade de Vida , Oncologia , Neoplasias/terapia , Neoplasias/psicologia , Taxa de Sobrevida
5.
J Pediatr Hematol Oncol ; 45(3): e323-e327, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36706312

RESUMO

BACKGROUND: Childhood cancer survivors (CCS) are at increased risk of developing skin cancer. Engaging in sun-protective behaviors may ameliorate that risk, but prior work shows that survivors engage in suboptimal levels of sun-protective behaviors. Guided by the Health Belief Model (HBM), this study evaluated factors associated with sun-protective behavior among CCS. METHODS: This is a secondary analysis of a survey study of 94 adult survivors of childhood cancer recruited from a long-term follow-up clinic. Participants reported their sun protection habits, skin type/sensitivity, barriers to sun protection, and perceived severity and susceptibility of getting skin cancer. Descriptive statistics were used to describe the prevalence of sun protection behaviors and hierarchical linear regression was used to evaluate predictors of sun protection behavior following the HBM. RESULTS: On average, CCS engaged in moderate levels of sun-protective behaviors ( M =2.53; SD=0.59). Hierarchical linear regression indicated that fair skin type ( P =0.02) and higher perceived susceptibility relative to noncancer survivors ( P =0.02) were associated with increased sun protection behaviors. Perceived barriers to sun protection were marginally significant ( P =0.09), whereas other constructs from the HBM did not contribute significantly to the model. CONCLUSIONS: Although CCS are at increased risk of developing skin cancer, they engage in suboptimal levels of sun protection behaviors. Findings suggest that interventions to educate survivors about their unique risk of skin cancer and effective prevention behaviors are needed.


Assuntos
Sobreviventes de Câncer , Neoplasias Cutâneas , Adulto , Humanos , Criança , Protetores Solares/uso terapêutico , Comportamentos Relacionados com a Saúde , Neoplasias Cutâneas/etiologia , Neoplasias Cutâneas/prevenção & controle , Sobreviventes , Conhecimentos, Atitudes e Prática em Saúde
6.
Health Commun ; : 1-18, 2023 Aug 10.
Artigo em Inglês | MEDLINE | ID: mdl-37559483

RESUMO

Provider empathy is a crucial component in establishing therapeutic provider-patient relationships. The benefits of increased perceptions of empathy can support patient psychological adjustment to their cancer as well as patients' comfort and confidence in disclosing to providers, ultimately promoting patient engagement. Guided by the disclosure decision-making model, this manuscript explores how perceptions of empathy influence patient psychological adjustment and how those variables influence patient disclosure efficacy. The model ultimately predicts patient sharing and withholding of information during the medical interaction. This study tested a mediation model to investigate how current (n = 111) and former (n = 174) breast cancer patients' psychological adjustment mediates the relationship between patient perceptions of oncologist empathic communication and efficacy to disclose health information to their oncologist and their disclosure enactment in sharing and withholding. Overall, former patients compared to current patients had more positive perceptions of their oncologist's empathic communication, had better psychological adjustment, felt more self-efficacy to disclose to their oncologist, and shared more and withheld less information from their oncologist (p < .05 in all cases). Structural equation modeling revealed good fit to the data for both current and former patients such that more perceived empathic communication was associated with more efficacy for disclosure, which was associated with more sharing and less withholding. Additionally, there was an indirect relationship from perceptions of empathic communication to disclosure efficacy through patients' psychological adjustment to the diagnosis. Results reinforce the importance of providers' empathic communication for cancer patients' psychological adjustment because patient sharing and withholding of information remain crucially important to achieving holistic care across the cancer trajectory.

7.
Cancer ; 128(13): 2405-2419, 2022 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-35435238

RESUMO

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence-based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence-based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment-related late adverse effects for survivors of CAYA cancers. LAY SUMMARY: A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes.


Assuntos
Neoplasias do Sistema Nervoso Central , Neoplasias , Adolescente , Adulto , Criança , Progressão da Doença , Escolaridade , Emprego , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Guias de Prática Clínica como Assunto , Qualidade de Vida , Sobreviventes , Adulto Jovem
8.
Support Care Cancer ; 30(9): 7755-7762, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35704099

RESUMO

This study describes the experiences of cancer caregivers and compares these experiences with patients' assessment of cancer's toll on their caregiver. Participants (16 patient-caregiver dyads) were recruited from a NCI cancer center of excellence in the northeastern United States. Patients were in treatment for ovarian (n = 7), uterine (n = 2), or endometrial (n = 7) cancers. Caregivers included 7 women and 9 men who described themselves as spouse/partner (n = 7), adult child (n = 4), sister (n = 2), parent (n = 1), nephew (n = 1), and friend (n = 1). Participants completed semi-structured individual interviews that focused on perceptions of caregiver burden or the impact of the patient's diagnosis on the caregiver specifically. Data were coded inductively to identify themes present within participants' responses. This process included open and axial coding. Two overarching themes emerged: (1) patient-caregiver agreement and (2) patient-caregiver disagreement. Patient-caregiver agreement included two subthemes: (1) weight gain and (2) weight loss. Patient-caregiver disagreement consisted of two subthemes: (1) differing perspectives of quantity and quality of caregiving provided and (2) withholding of caregiver concerns. Overall, there was 56% agreement between patient and caregiver responses. The results may inform intervention development to address patient-caregiver communication, cancer caregiver needs, and ultimately improve caregiver quality of life.


Assuntos
Cuidadores , Neoplasias dos Genitais Femininos , Adulto , Filhos Adultos , Comunicação , Efeitos Psicossociais da Doença , Família , Feminino , Neoplasias dos Genitais Femininos/terapia , Humanos , Masculino , Qualidade de Vida
9.
Eur J Cancer Care (Engl) ; 31(2): e13553, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35166393

RESUMO

OBJECTIVES: The aims were (1) to characterise preparedness for survivorship and (2) to evaluate sociodemographic, medical, survivorship care transition experiences (e.g., receiving a survivorship care plan), practical (e.g., cancer-related financial hardships and information needs) and psychological (e.g., fear of recurrence) factors with preparedness for survivorship. METHODS: Three hundred and forty-six residents of Southern New Jersey who were diagnosed in 2015 or 2016 with bladder, breast, gynaecological, colorectal, lung, melanoma, prostate or thyroid cancer were identified and consented by the New Jersey State Cancer Registry. Participants completed a questionnaire assessing preparedness, provider care transition practices, financial hardships, information needs and fear of cancer recurrence. Correlations and multivariate analyses were conducted to identify factors associated with preparedness for survivorship. RESULTS: Participants reported feeling somewhat prepared for survivorship. More than half reported not receiving a written survivorship care plan and many desired more information about follow-up tests, symptoms monitoring and maintaining good nutrition and health. Receipt of chemotherapy, limited transition care planning, limited discussion of medical and psychosocial effects, high information needs and financial hardship were predictors of low preparedness. CONCLUSION: Identifying and addressing factors associated with survivorship preparedness at end of treatment and over cancer survivorship trajectory will foster higher quality survivorship experiences.


Assuntos
Sobreviventes de Câncer , Neoplasias , Cuidado Transicional , Sobreviventes de Câncer/psicologia , Humanos , Masculino , Neoplasias/psicologia , Neoplasias/terapia , New Jersey , Sobrevivência
10.
Qual Health Res ; 32(4): 710-724, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35000506

RESUMO

Health care providers routinely advise cancer patients to involve support persons in oncology care to fulfill critical support roles. This qualitative descriptive study explored alignment of triadic perceptions of support person involvement in oncology treatment visits and cancer-related care from the perspectives of patients with gynecologic cancer (n = 18), regular visit-attending support people (n = 16), and health care providers (n = 10), including oncologists, nurses, and medical assistants. Semi-structured interviews (N = 44) captured perceptions of facilitation and interference of support persons' roles within and outside appointments with oncology providers. Thematic analyses revealed alignment and divergence regarding support persons' instrumental, informational, and emotional support behaviors. Perspectives aligned regarding what support functions companions provide. However, patients and support persons emphasized the significance of instrumental followed by informational and emotional support, whereas oncology providers highlighted informational, followed by emotional and instrumental support. Discussion provides insight into each role's perspective in the triad.


Assuntos
Neoplasias , Oncologistas , Comunicação , Feminino , Humanos , Oncologia , Neoplasias/psicologia , Pesquisa Qualitativa
11.
J Cancer Educ ; 37(3): 788-797, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-33025453

RESUMO

We describe an iterative three-phase approach used to develop a cancer survivorship health-coaching intervention to guide self-management and follow-up care for post-treatment breast, colorectal, and prostate cancer survivors. Informed by theory (e.g., Cognitive-Social Health Information Processing Model (C-SHIP)), relevant literature, and clinical guidelines, we engaged in a user-centered design process. In phase I, we conducted depth interviews with survivors of breast (n = 34), prostate (n = 4), and colorectal (n = 6) cancers to develop a health coaching prototype. In phase II, we utilized user-testing interviews (n = 9) to test and refine the health coaching prototype. For both phases, we used a template analysis independently coding each interview. In phase I, majority (n = 34, 81%) of survivors were positive about the utility of health coaching. Among these survivors (n = 34), the top areas of identified need were emotional support (44%), general health information (35.3%), changes in diet and exercise (29.3%), accountability and motivation (23.5%), and information about treatment effects (17.7%). The prototype was developed and user-tested and refined in phase III to address the following concerns: (1) the amount of time for calls, (2) density of reading materials, (3) clarity about health coaches' role, (4) customization. Collectively, this resulted in the development of the Extended Cancer Educational for Long-Term Cancer Survivors health-coaching (EXCELSHC) program, which represents the first cancer survivorship follow-up program to support follow-up care designed-for-dissemination in primary care settings. EXCELSHC is being tested in a clinical efficacy trial. Future research will focus on program refinement and testing for effectiveness in primary care.


Assuntos
Sobreviventes de Câncer , Neoplasias Colorretais , Tutoria , Neoplasias da Próstata , Assistência ao Convalescente , Neoplasias da Mama , Sobreviventes de Câncer/psicologia , Feminino , Seguimentos , Humanos , Masculino
12.
J Clin Psychol Med Settings ; 29(4): 911-942, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35147830

RESUMO

Technology may help adolescents with chronic illnesses overcome barriers to accessing peer support, which has been associated with better quality of life and health outcomes. This review aimed to describe technology-based peer support interventions for adolescents with chronic illness following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Of 3781 articles identified, 32 met inclusion criteria. The most common technologies were websites with discussion forums (n = 18), chat messaging (n = 9), and video conferencing (n = 7). Most studies (69%) focused on feasibility and had small sample sizes. Results support the feasibility and acceptability of these interventions. Results suggested positive effects on social support, but were mixed on isolation, quality of life, and disease self-management. There were too few adequately powered randomized controlled trials to determine efficacy of these interventions at this time. Future work should use rigorous methods to evaluate efficacy and account for rapid shifts in technology for adolescent communication.


Assuntos
Qualidade de Vida , Autogestão , Adolescente , Humanos , Doença Crônica , Apoio Social , Tecnologia
13.
Pediatr Blood Cancer ; 68(5): e28947, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33686754

RESUMO

This 2021 clinical practice guideline update provides recommendations for preventing anticipatory chemotherapy-induced nausea and vomiting (CINV) in pediatric patients. Recommendations are based on systematic reviews that identified (1) if a history of acute or delayed CINV is a risk factor for anticipatory CINV, and (2) interventions for anticipatory CINV prevention and treatment. A strong recommendation to optimize acute and delayed CINV control in order to prevent anticipatory CINV is made. Conditional recommendations are made for hypnosis, systematic desensitization, relaxation techniques, and lorazepam for the secondary prevention of anticipatory CINV. No recommendation for the treatment of anticipatory CINV can be made.


Assuntos
Antineoplásicos/efeitos adversos , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Náusea/prevenção & controle , Neoplasias/tratamento farmacológico , Vômito Precoce/prevenção & controle , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Náusea/induzido quimicamente , Vômito Precoce/psicologia
14.
Support Care Cancer ; 29(11): 6613-6623, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33945015

RESUMO

PURPOSE: To identify predictors of financial hardship, operationalized as foregoing health care, making financial sacrifices, and being concerned about having inadequate financial and insurance information. METHODS: Cancer survivors (n = 346) identified through the New Jersey State Cancer Registry were surveyed from August 2018 to September 2019. Multivariable logistic regression analyses were performed. RESULTS: Cancer survivors with household incomes less than $50,000 annually were more likely than those earning $50,0000-$90,000 to report foregoing health care (15.8 percentage points, p < 0.05). Compared to retirees, survivors who were currently unemployed, disabled, or were homemakers were more likely to forego doctor's visits (11.4 percentage points, p < 0.05), more likely to report borrowing money (16.1 percentage points, p < 0.01), and more likely to report wanting health insurance information (25.7 percentage points, p < 0.01). Employed survivors were more likely than retirees to forego health care (16.8 percentage points, p < 0.05) and make financial sacrifices (20.0 percentage points, p < 0.01). Survivors who never went to college were 9.8 percentage points (p < 0.05) more likely to borrow money compared to college graduates. Black survivors were more likely to want information about dealing with financial and insurance issues (p < 0.01); men were more likely to forego health care (p < 0.05). CONCLUSION: Findings highlight the role of employment status and suggest that education, income, race, and gender also shape cancer survivors' experience of financial hardship. There is a need to refine and extend financial navigation programs. For employed survivors, strengthening family leave policies would be desirable.


Assuntos
Sobreviventes de Câncer , Neoplasias , Efeitos Psicossociais da Doença , Estresse Financeiro , Humanos , Masculino , New Jersey , Sobreviventes
15.
J Pediatr Psychol ; 46(4): 413-421, 2021 04 16.
Artigo em Inglês | MEDLINE | ID: mdl-33367833

RESUMO

OBJECTIVE: Bright IDEAS (BI) is a problem-solving skills training (PSST) program that has been demonstrated in earlier randomized controlled trials (RCTs) to be an effective and specific intervention for improving problem-solving skills and reducing negative affect in caregivers of children with cancer. The objectives of this study were to (a) offer an approach to defining meaningful treatment response and to determine the rates of responsivity to PSST; and (b) identify characteristics of PSST responders and nonresponders. METHODS: Data from 154 mothers receiving the BI intervention were analyzed. Drawing on the literature on minimal clinically important differences, two criteria for determining responsivity were calculated for the primary outcome of problem-solving skills: (a) The reliable change index (RCI) based on group data, and; (b) The effect size (ES) of each participant's pre/postintervention change score as a function of the group's baseline SD. RESULTS: Thirty-three percent of the sample met both responsivity criteria immediately posttreatment (39% at follow-up) and 38% (39% at follow-up) met neither. An additional 29% demonstrated a small or greater ES (≥ 0.2) but did not meet the RCI criteria, suggesting possible benefit. The single consistent predictor of responsivity was participants' pretreatment problem-solving skills, with lower skills at baseline predicting greater improvement (p < .001). CONCLUSIONS: These findings highlight the need to go beyond group data in interpreting RCTs and to incorporate measures of meaningful treatment response. Our ability to predict and screen for meaningful treatment response is critical to more precise targeting, enhanced outcomes, and better resource allocation.


Assuntos
Mães , Neoplasias , Atenção , Criança , Feminino , Humanos , Relações Mãe-Filho , Neoplasias/terapia , Resolução de Problemas
16.
J Pediatr Psychol ; 46(6): 650-661, 2021 07 20.
Artigo em Inglês | MEDLINE | ID: mdl-33779756

RESUMO

OBJECTIVE: Advances in medical care have resulted in nearly 95% of all children with sickle cell disease (SCD) living to adulthood. There is a lack of effective transition programming, contributing to high rates of mortality and morbidity among adolescents and young adults (AYAs) during the transition from pediatric to adult healthcare. This nonrandomized study evaluated the feasibility, acceptability, and preliminary outcomes of a novel medical student mentor intervention to improve transition outcomes for AYA with SCD. METHODS: Eligible participants were ages 18-25 years, either preparing for transition or had transferred to adult care within the past year. Twenty-four AYA with SCD (Mage = 20.3, SD = 2.6) enrolled in the program and were matched with a medical student mentor. Feasibility and acceptability of the intervention was assessed through enrollment rates, reasons for refusal, retention rates, engagement with the intervention, satisfaction, and reasons for drop-out. Dependent t-tests were used to evaluate the preliminary effects of the intervention on patient transition readiness, health-related quality of life, self-efficacy, SCD knowledge, medication adherence, and health literacy. RESULTS: Participants (N = 24) demonstrated adequate retention (75.0%), adherence to the intervention (M = 5.3 of 6 sessions), and satisfaction with the intervention components. Participants demonstrated significant improvements in transition readiness (p = .001), self-efficacy (p = .002), medication adherence (p = .02), and health literacy (p = .05). CONCLUSIONS: A medical student mentor intervention to facilitate transition from pediatric to adult care for AYA with SCD is both feasible and acceptable to patients and medical students. Preliminary results suggest benefits for patients, warranting a larger efficacy study.


Assuntos
Anemia Falciforme , Estudantes de Medicina , Transição para Assistência do Adulto , Adolescente , Adulto , Anemia Falciforme/terapia , Criança , Estudos de Viabilidade , Humanos , Mentores , Qualidade de Vida , Adulto Jovem
17.
Psychooncology ; 29(1): 123-131, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31626397

RESUMO

OBJECTIVE: The aim of this study is to describe a user-centered (e.g., cancer survivors and clinicians) development process of an eHealth tool designed to facilitate self-management of cancer survivorship follow-up care. METHODS: Guided by Cognitive-Social Health Information Processing (C-SHIP) model and informed by core self-management skills, we engaged in a user-centered design process. In phase I, we conducted in-depth interviews with survivors of breast (n = 33), prostate (n = 4), and colorectal (n = 6) cancers, and (n = 9) primary care providers to develop content and design of the web tool. Phase II utilized iterative user testing interviews (n = 9) to test the web-based tool prototype. Data from both phases were independently coded using a template/content analytic approach. RESULTS: The top 5 functions identified in phase I for the web-based platform included: (a) educational materials to learn and prepare for health encounters (80%); (b) questions for health providers (74%); (c) ability to track contact information of providers (67%); (d) provide general information (64%); and, (e) support information (62%). Users of the prototype reported patient burden, tool fatigue, introduction timing of the tool, relevance, and security/privacy as concerns in phase II. CONCLUSIONS: This study demonstrates the value of using a theoretically informed and user-centered design process to develop relevant and patient-centered eHealth resources to support cancer survivorship. A larger study is needed to establish the efficacy of this eHealth tool as an intervention to improve adherence to follow-up care guidelines.


Assuntos
Assistência ao Convalescente/psicologia , Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Preferência do Paciente/psicologia , Sobrevivência , Telemedicina/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/reabilitação , Autogestão , Interface Usuário-Computador
18.
Curr Opin Pediatr ; 32(1): 41-47, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31790025

RESUMO

PURPOSE OF REVIEW: This article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcomes, evidence-based interventions, survivorship, palliative care and bereavement. RECENT FINDINGS: Although attention to the psychosocial needs of the child and family is increasingly recognized as an essential element of care for children with cancer, implementing evidence-based care remains suboptimal. Recent efforts have focused on utilizing technology to improve the reach of these interventions and to enhance engagement with special populations, such as adolescents and young adults. Increasing data elucidate the long-term psychological and physical late effects of childhood cancer survivorship and the impact of cancer on siblings and the family. Gaps in clinical care and important directions for future research include the needs of infants and toddlers, overlooked minorities, and patients with hereditary tumor predisposition syndromes, and attention to the psychosocial impact of exciting new treatments, such as autologous chimeric antigen receptor (CAR) T-cell therapy. SUMMARY: The evidence base for the psychosocial standards of care for children with cancer and their families continues to grow, but more work is needed to successfully implement these standards across pediatric cancer centers.


Assuntos
Sobreviventes de Câncer/psicologia , Família/psicologia , Neoplasias/terapia , Psico-Oncologia/tendências , Irmãos/psicologia , Adolescente , Criança , Pré-Escolar , Humanos , Imunoterapia Adotiva , Lactente , Neoplasias/psicologia , Cuidados Paliativos , Adulto Jovem
19.
Pediatr Blood Cancer ; 67(9): e28530, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32589339

RESUMO

BACKGROUND: This study evaluated the feasibility of a technology-enhanced group-based fitness intervention for adolescent and young adult (AYA) survivors of childhood cancer. PROCEDURE: AYA survivors ages 13-25 years were randomized to the intervention (eight in-person group sessions with mobile app and FitBit followed by 4 weeks of app and FitBit only) or waitlist control. Assessments were at 0, 2, 3, 6, and 9 months. Feasibility was evaluated by enrollment, retention, attendance, app engagement, and satisfaction. Secondary outcomes included physical activity, muscular strength/endurance, cardiorespiratory fitness, health-related quality of life, and fatigue. RESULTS: A total of 354 survivors were mailed participation letters; 68 (19%) were screened, of which 56 were eligible and 49 enrolled (88% of those screened eligible, 14% of total potentially eligible). Forty-nine survivors (Mage  = 18.5 years, 49% female) completed baseline assessments and were randomized (25 intervention, 24 waitlist). Thirty-seven (76%) completed the postintervention assessment and 32 (65%) completed the final assessment. On average, participants attended 5.7 of eight sessions (range 1-8). Overall intervention satisfaction was high (M = 4.3, SD = 0.58 on 1-5 scale). Satisfaction with the companion app was moderately high (M = 3.4, SD = 0.97). The intervention group demonstrated significantly greater improvement in lower body muscle strength compared to the waitlist postintervention, and small but not statistically significant changes in other secondary measures. CONCLUSIONS: A group-based intervention with a mobile app and fitness tracker was acceptable but has limited reach due to geographical barriers and competing demands experienced by AYA survivors.


Assuntos
Sobreviventes de Câncer/psicologia , Exercício Físico , Monitores de Aptidão Física/estatística & dados numéricos , Aplicativos Móveis/estatística & dados numéricos , Neoplasias/reabilitação , Qualidade de Vida , Adolescente , Adulto , Estudos de Viabilidade , Feminino , Seguimentos , Humanos , Masculino , Prognóstico , Taxa de Sobrevida , Adulto Jovem
20.
Pediatr Blood Cancer ; 67(12): e28702, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32969160

RESUMO

Childhood, adolescent, and young adult (CAYA) cancer survivors may be at risk for a severe course of COVID-19. Little is known about the clinical course of COVID-19 in CAYA cancer survivors, or if additional preventive measures are warranted. We established a working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) to summarize existing evidence and worldwide recommendations regarding evidence about factors/conditions associated with risk for a severe course of COVID-19 in CAYA cancer survivors, and to develop a consensus statement to provide guidance for healthcare practitioners and CAYA cancer survivors regarding COVID-19.


Assuntos
Betacoronavirus , Sobreviventes de Câncer , Infecções por Coronavirus/prevenção & controle , Infecções por Coronavirus/terapia , Neoplasias/terapia , Pandemias/prevenção & controle , Pneumonia Viral/prevenção & controle , Pneumonia Viral/terapia , Adolescente , Adulto , COVID-19 , Criança , Pré-Escolar , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/transmissão , Feminino , Humanos , Masculino , Neoplasias/epidemiologia , Pneumonia Viral/epidemiologia , Pneumonia Viral/transmissão , Guias de Prática Clínica como Assunto , SARS-CoV-2 , Adulto Jovem
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