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1.
Psychooncology ; 32(11): 1718-1726, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37772984

RESUMEN

BACKGROUND: The comparative effectiveness study (ClinicalTrials.gov, NCT03016403) assessed the effects of a stepped-care intervention versus usual care on mental health outcomes, including anxiety, depression, coping self-efficacy, emotional distress (anxiety and depression combined), health-related quality of life (HRQoL), and perceived stress among underserved patients (i.e., low-income, uninsured, underinsured) with lung cancer (LC) and head-and-neck cancer (HNC). METHODS: In a randomized controlled trial, we investigated if 147 patients who received the stepped-care intervention had better mental health outcomes compared to 139 patients who received usual care. Using an intent-to-treat approach, we analyzed outcomes with linear mixed models. RESULTS: For the primary outcomes estimated mean differences (denoted by "Δ"), depression (Δ = 1.75, 95% CI = 0.52, 2.98, p = 0.01) and coping self-efficacy (Δ = -15.24, 95% CI = -26.12, -4.36, p = 0.01) were better for patients who received the intervention compared to patients who received usual care, but anxiety outcomes were not different. For secondary outcomes, emotional distress (Δ = 1.97, 95% CI: 0.68, 3.54, p =< 0.01) and HRQoL (Δ = -4.16 95% CI: -7.45, -0.87, p = 0.01) were better for patients who received the intervention compared to usual care patients, while perceived stress was not different across groups. CONCLUSIONS: The stepped-care intervention influenced depression and coping self-efficacy, important outcomes for patients with acute illnesses like LC and HNC. Although differences in emotional distress met the minimally important differences (MID) previously reported, depression and HRQoL were not above the MID threshold. Our study is among a few to report differences in mental health outcomes for underserved LC and HNC patients after receiving a psychological intervention. GOV IDENTIFIER: NCT03016403.


Asunto(s)
Neoplasias de Cabeza y Cuello , Neoplasias Pulmonares , Humanos , Calidad de Vida , Poblaciones Vulnerables , Depresión/psicología , Neoplasias Pulmonares/psicología , Pulmón , Evaluación de Resultado en la Atención de Salud
3.
Cancer Causes Control ; 34(Suppl 1): 113-123, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37069456

RESUMEN

PURPOSE: Community engagement is essential in effective public health programs. This paper illustrates the methods used to engage community in the development of a multi-level implementation intervention to address cancer disparities related to hereditary cancer syndromes. METHODS: Implementation Mapping (IM), was used to guide the co-creation of an intervention. Key partners were recruited to a 13-member statewide community advisory board (CAB) representing healthcare and community-based organizations. As part of a needs assessment, a 3-round modified Delphi method with the CAB was used to identify implementation outcomes to use in later steps of IM. An anonymous online survey of a validated community engagement measure assessed CAB members' satisfaction with the process. RESULTS: Using a modified Delphi method as part of the needs assessment of IM, the CAB identified three broad categories of strategies: Changing infrastructure using patient navigation; training and educating patients, navigators and providers; and supporting clinicians in case identification and management. Self-reported satisfaction with the IM and Delphi process was high. CONCLUSIONS: Implementation Mapping facilitated the use of available evidence, new data, and community engagement to identify strategies to improve the delivery of programs to reduce hereditary cancer disparities. The modified Delphi method was easy to administer in a virtual environment and may be a useful for others in community-engaged research.


Asunto(s)
Investigación Participativa Basada en la Comunidad , Neoplasias , Humanos , Investigación Participativa Basada en la Comunidad/métodos , Atención a la Salud , Neoplasias/prevención & control
4.
Palliat Support Care ; 21(5): 820-828, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-36994841

RESUMEN

OBJECTIVES: Caregivers of adult phase 1 oncology trial patients experience high levels of distress and face barriers to in-person supportive care. The Phase 1 Caregiver LifeLine (P1CaLL) pilot study assessed the feasibility, acceptability, and general impact of an individual telephone-based cognitive behavioral stress-management (CBSM) intervention for caregivers of phase I oncology trial patients. METHODS: The pilot study involved 4 weekly adapted CBSM sessions followed by participant randomization to 4 weekly cognitive behavioral therapy sessions or metta-meditation sessions. A mixed-methods design used quantitative data from 23 caregivers and qualitative data from 5 caregivers to examine the feasibility and acceptability outcomes. Feasibility was determined using recruitment, retention, and assessment completion rates. Acceptability was assessed with self-reported satisfaction with program content and participation barriers. Baseline to post-intervention changes in caregiver distress and other psychosocial outcomes were assessed for the 8-session intervention. RESULTS: The enrollment rate was 45.3%, which demonstrated limited feasibility based on an a priori criterion enrollment rate of 50%. Participants completed an average of 4.9 sessions, with 9/25 (36%) completing all sessions and an 84% assessment completion rate. Intervention acceptability was high, and participants found the sessions helpful in managing stress related to the phase 1 oncology trial patient experience. Participants showed reductions in worry and isolation and stress. SIGNIFICANCE OF RESULTS: The P1CaLL study demonstrated adequate acceptability and limited feasibility and provided data on the general impact of the intervention on caregiver distress and other psychosocial outcomes. Caregivers of phase 1 oncology trial patients would benefit from supportive care services; a telephone-based intervention may have more utilization and thus make a larger impact.


Asunto(s)
Terapia Cognitivo-Conductual , Neoplasias , Adulto , Humanos , Proyectos Piloto , Cuidadores/psicología , Teléfono , Estudios de Factibilidad , Cognición
5.
Sci Rep ; 12(1): 19547, 2022 11 15.
Artículo en Inglés | MEDLINE | ID: mdl-36380060

RESUMEN

Women diagnosed with breast cancer undergoing chemotherapy experience cognitive impairment, symptoms of anxiety and depression, and physical side effects including disruption in the diversity and community composition of the gut microbiome. To date, there is limited research exploring the associations among these specific challenges. The present cross-sectional study explored the associations of self-reported cognitive functioning, depression, and anxiety symptoms, and gut microbiome diversity and community composition in women who were diagnosed with and undergoing chemotherapy treatment for breast cancer (BC) compared to cancer-free healthy controls (HC). The BC group displayed higher rates of cognitive dysfunction (p < 0.001) and depressive symptoms (p < 0.05) relative to HC. There was a significant difference in microbiome community composition between BC and HC, particularly characterized by a decreased relative abundance of the mucin-degrading genus Akkermansia in BC compared to HC (p < 0.05). Association models identified significant associations among group, cognitive, depression, and microbiome variables (p < 0.001). Overall, the study identified that BC participants experienced significant differences in self-reported cognitive functioning, self-reported depression symptoms, microbiome community composition, and mucin-degrading bacteria of the gut-mucosal barrier, relative to HC. The present study is consistent with the hypothesis that gut microbiome community composition impacts a woman's experience with breast cancer and treatment suggesting that microbiome-based interventions have potential for improving quality of life outcomes in individuals with breast cancer.


Asunto(s)
Neoplasias de la Mama , Microbioma Gastrointestinal , Humanos , Femenino , Neoplasias de la Mama/psicología , Calidad de Vida , Estudios Transversales , Cognición , Mucinas
6.
BMC Public Health ; 22(1): 1935, 2022 10 18.
Artículo en Inglés | MEDLINE | ID: mdl-36258185

RESUMEN

BACKGROUND: Community Heart Health Actions for Latinos at Risk (CHARLAR) is a promotora-led cardiovascular disease (CVD) risk-reduction program for socio-demographically disadvantaged Latinos and consists of 11 skill-building sessions. The COVID-19 pandemic has led to worsening health status in U.S. adults and necessitated transition to virtual implementation of the CHARLAR program. METHODS: A mixed-methods approach was used to evaluate virtual delivery of CHARLAR. Changes in health behaviors were assessed through a pre/post program survey. Results from virtual and historical (in-person delivery) were compared. Key informant interviews were conducted with promotoras and randomly selected participants and then coded and analyzed using a thematic approach. RESULTS: An increase in days of exercise per week (+ 1.52), daily servings of fruit (+ 0.60) and vegetables (+ 0.56), and self-reported general health (+ 0.38), were observed in the virtual cohort [all p < 0.05]. A numeric decrease in PHQ-8 (-1.07 p = 0.067) was also noted. The historical cohort showed similar improvements from baseline in days of exercise per week (+ 0.91), daily servings of fruit (+ 0.244) and vegetables (+ 0.282), and PHQ-8 (-1.89) [all p < 0.05]. Qualitative interviews revealed that the online format provided valuable tools supporting positive behavior change. Despite initial discomfort and technical challenges, promotoras and participants adapted and deepened valued relationships through additional virtual support. CONCLUSION: Improved health behaviors and CVD risk factors were successfully maintained through virtual delivery of the CHARLAR program. Optimization of virtual health programs like CHARLAR has the potential to increase reach and improve CVD risk among Latinos.


Asunto(s)
COVID-19 , Enfermedades Cardiovasculares , Adulto , Humanos , Pandemias , Promoción de la Salud/métodos , Hispánicos o Latinos , Enfermedades Cardiovasculares/epidemiología , Enfermedades Cardiovasculares/prevención & control
7.
J Cyst Fibros ; 21(2): 332-338, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-34366282

RESUMEN

BACKGROUND: Adults with cystic fibrosis (awCF) have higher levels of depression and anxiety than community samples. The Coping and Learning to Manage Stress with CF (CALM) intervention was developed for awCF reporting elevated symptoms of depression or anxiety. METHODS: In this pilot study, awCF were randomly assigned to either six telehealth sessions (CALM; n = 15) or treatment-as-usual (TAU; n = 16). Primary outcomes were depression and anxiety. Secondary outcomes were coping self-efficacy and health-related quality of life (HrQOL). Tertiary outcomes were feasibility, acceptability, and satisfaction. Assessments were completed at baseline, post-intervention, and 3-month follow-up. Group differences were examined via independent samples t-tests. Effect size (ES) was calculated via Cohen's d to provide a measure of the magnitude of the treatment effect. RESULTS: At post-intervention, the CALM group had a lower mean score than the TAU group for depression (medium ES) and anxiety (large ES). The CALM group had higher (i.e., better) mean scores than the TAU group for coping (large ES) and HrQOL domains of Social Functioning (large ES) and Vitality (large ES). Most treatment gains were not sustained at 3-month follow-up. CALM was feasible, requiring <12 min. for setup and scheduling, and allowed seamless participation when hospitalized. Mean scores for acceptability and satisfaction indicated that most participants either agreed or strongly agreed that CALM was acceptable and satisfactory. CONCLUSIONS: CALM shows promise as an intervention to reduce symptoms of depression and anxiety and improve coping and HrQOL. Next steps are to add a booster session and examine CALM via a multi-site RCT.


Asunto(s)
Fibrosis Quística , Telemedicina , Adulto , Ansiedad/diagnóstico , Ansiedad/etiología , Ansiedad/terapia , Fibrosis Quística/complicaciones , Fibrosis Quística/terapia , Depresión/diagnóstico , Depresión/etiología , Depresión/terapia , Humanos , Proyectos Piloto , Calidad de Vida
8.
Cancer Nurs ; 44(6): E727-E734, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34694091

RESUMEN

BACKGROUND: Younger breast cancer survivors face unique challenges, and research is needed to better understand how to optimize their quality of life (QoL) and satisfaction with life (SwL). OBJECTIVE: The aim of this study was to examine a biopsychosocial model of QoL and SwL in young breast cancer survivors. Biological, psychological, and social/practical factors were hypothesized to be associated with both distressing and adaptive reactions during survivorship, which in turn were hypothesized to be associated with QoL and SwL. METHODS: Young (age = 19-45 years at diagnosis) breast cancer survivors (N = 284) completed an online survey assessing demographic and biopsychosocial factors, QoL, and SwL. Latent variables were created for adaptive and distressing reactions, and structural equation modeling was used to test the hypothesized relationships. RESULTS: The model fit the data (χ2(100) = 332.92, P < .001, comparative fit index = 0.86, root mean square error of approximation = 0.09, standardized root mean square residual = 0.05) and accounted for large proportions of variance in QoL (R2 = 0.86) and SwL (R2 = 0.62). Social support, parenting concerns, and fertility concerns each significantly predicted adjustment. Adaptive reactions positively predicted SwL (ß = 0.58, P < .001) but not QoL. Distressing reactions negatively predicted SwL (ß = -0.26, P < .01) and QoL (ß = -0.87, P < .001). CONCLUSIONS: Adjustment in survivorship mediated the association of social support, parenting concerns, and fertility concerns on QoL and SwL in young breast cancer survivors. IMPLICATIONS FOR PRACTICE: To support the psychological adjustment of young breast cancer survivors, attention should be given to survivors' social context including survivors' available social support and their concerns about fertility and parenting.


Asunto(s)
Neoplasias de la Mama , Supervivientes de Cáncer , Adulto , Femenino , Humanos , Persona de Mediana Edad , Satisfacción Personal , Calidad de Vida , Encuestas y Cuestionarios , Sobrevivientes , Adulto Joven
9.
Psychooncology ; 30(4): 520-528, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33217070

RESUMEN

OBJECTIVE: Caregivers of patients with advanced cancer experience significant anxiety, depression, and distress. Caregivers have barriers to accessing in-person treatment to manage stress. Technology allows for the dissemination of evidence-based interventions in a convenient way. This study examined usage rates of Pep-Pal (an evidence-based mobilized intervention to help caregivers of patients with advanced cancer manage distress) and estimates of efficacy on anxiety, depression, stress, and sexual dysfunction. METHODS: Fifty-six primary caregivers of patients with advanced cancer were recruited through oncology clinics and randomized to either Pep-Pal (a mobilized psychoeducation and skills-based intervention for caregivers, n = 26) or treatment as usual (TAU; n = 30). All were screened for moderate anxiety on the Hospital Anxiety and Depression Scale-Anxiety screening assessment (A ≥ 8) at baseline. RESULTS: Participants randomized to Pep-Pal experienced greater reductions in perceived stress (PSS; F = 3.91, p = .05), greater increases in ability to learn and use stress management skills (F = 6.16, p = 0.01), and greater increases in sexual function (women only; F = 5.07, p = 0.03) compared to participants in TAU. Of Pep-Pal participants, only 10 (38.5%) watched at least 7/9 full-length sessions. The a priori hypothesis and criterion that participants would watch at least 75% full-length sessions were not met. CONCLUSIONS: A brief, easily disseminated mobile intervention showed poor adherence, but had limited estimates of efficacy for secondary outcomes; perceived stress, learning stress management skills, and sexual functioning (women only). Future directions are discussed.


Asunto(s)
Cuidadores , Neoplasias , Depresión/terapia , Femenino , Humanos , Neoplasias/terapia , Proyectos Piloto , Calidad de Vida
10.
J Cancer Surviv ; 14(5): 653-659, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32394045

RESUMEN

PURPOSE: Colorectal cancer (CRC) is the third most common cancer in the USA. The objective of this study was to compare quality of life (QoL) across long-term colorectal cancer survivors and unaffected matched controls while adjusting for comorbidities. METHODS: The National Cancer Institute (NCI)-funded Colon Cancer Family Registry (CCFR) was used to randomly select and recruit CRC survivors (≥ 5 years from diagnosis) and matched controls for a cross-sectional survey. Nine geographically diverse sites in the USA from the CCFR participated in the study. Telephone interviews were conducted using computer-assisted methods to assess QoL. RESULTS: A total of 403 cases and 401 controls were included in the final sample. Unadjusted comparison revealed no significant difference between CRC survivors and controls with respect to measures of fatigue, social, emotional, functional, and physical well-being. Multivariate logistic regression revealed that case status had a significant negative influence on colorectal cancer-specific QoL measures. Higher comorbidity indices had a significant negative influence on overall QoL regardless of case status. CONCLUSIONS: Quality of life among long-term CRC survivors is similar to control subjects, with the exception of worse CRC-specific QoL measures. Higher comorbidity indices were independently associated with poor QoL for both cases and controls. IMPLICATIONS FOR CANCER SURVIVORS: Survivors and healthcare providers should be aware that long-term QoL is comparable to the general population; however, there is potential that digestive tract-specific issues may persist.


Asunto(s)
Supervivientes de Cáncer/psicología , Neoplasias Colorrectales/psicología , Calidad de Vida , Sistema de Registros/estadística & datos numéricos , Anciano , Estudios de Casos y Controles , Neoplasias Colorrectales/epidemiología , Neoplasias Colorrectales/terapia , Comorbilidad , Estudios Transversales , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Estados Unidos/epidemiología
11.
J Psychosoc Oncol ; 38(4): 449-462, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-31920170

RESUMEN

Purpose: We explored the treatment challenges and support needs that Hispanic underserved lung cancer and head-and-neck cancer patients face while undergoing cancer treatment.Design: Qualitative design - ethnography.Sample: Using a sample of 29 participants, we conducted semi-structured interviews with nine lung cancer and head-and-neck cancer survivors and seven health care providers and focus group interviews with six caregivers and seven patient navigators.Method: Relevant themes were extracted with Ethnographic content analysis.Findings: Participants reported treatment challenges and support needs in four areas: medical, financial, socio-cultural, and mental health. Health care providers and navigators primarily identified medical and financial challenges that impact treatment adherence, while patients and caregivers expressed the need for support for mental health problems (i.e., depression, anxiety).Implications for psychosocial providers: Understanding the experiences of underserved Hispanic cancer survivors can aid in creating psychosocial interventions that successfully target treatment-related challenges and provide them with the support they need.


Asunto(s)
Supervivientes de Cáncer/psicología , Neoplasias de Cabeza y Cuello/etnología , Hispánicos o Latinos/psicología , Neoplasias Pulmonares/etnología , Evaluación de Necesidades , Apoyo Social , Poblaciones Vulnerables/psicología , Adulto , Anciano , Supervivientes de Cáncer/estadística & datos numéricos , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Femenino , Grupos Focales , Neoplasias de Cabeza y Cuello/psicología , Neoplasias de Cabeza y Cuello/terapia , Personal de Salud/psicología , Personal de Salud/estadística & datos numéricos , Hispánicos o Latinos/estadística & datos numéricos , Humanos , Neoplasias Pulmonares/psicología , Neoplasias Pulmonares/terapia , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Poblaciones Vulnerables/estadística & datos numéricos
12.
Psychooncology ; 28(8): 1614-1623, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-31127974

RESUMEN

BACKGROUND: Psychological interventions reduce caregiver distress (CG-distress). Less distress in caregivers may contribute to improved patient quality of life (QoL), but empirical evidence is lacking. Will a caregiver stress management intervention improve patient QoL? METHODS: In this replication study, we randomized 155 allogeneic hematopoietic stem cell transplant (Allo-HSCT) patients and caregivers to PsychoEducation, Paced Respiration, and Relaxation (PEPRR) or enhanced treatment as usual (eTAU). We provided PEPRR over 3 months following transplant. Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) evaluated patient QoL, and CG-distress was based on depressive, anxious, and stress symptoms. Hierarchical linear models tested intervention, time, and interactions as fixed effects with participant as random effects. RESULTS: Patients whose caregivers received PEPRR did not differ on FACT-BMT between baseline and 6 months (mean = +3.74; 95% CI, -3.54 to 11.02) compared with patients of caregivers in eTAU (mean = +3.16; 95% CI, -2.88 to 9.20) even though CG-distress was decreased by PEPRR (mean = -0.23; 95% CI, -0.448 to -0.010) compared with those receiving eTAU (mean = +0.27; 95% CI, 0.033-0.504) at 6 months. CONCLUSIONS: PEPRR reduced CG-distress without affecting their patient's FACT-BMT score. The FACT-BMT may not have distinguished unique psychological changes associated with their caregiver receiving PEPRR.


Asunto(s)
Ejercicios Respiratorios/métodos , Cuidadores/psicología , Neoplasias/terapia , Distrés Psicológico , Psicoterapia/métodos , Calidad de Vida/psicología , Terapia por Relajación/métodos , Trasplante de Células Madre/enfermería , Estrés Psicológico/terapia , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Resultado del Tratamiento
13.
JMIR Cancer ; 5(1): e11406, 2019 May 03.
Artículo en Inglés | MEDLINE | ID: mdl-31066678

RESUMEN

BACKGROUND: Caregivers of patients with advanced diseases are known to have high levels of distress, including depression and anxiety. Recent research has focused on recognizing caregivers in need of psychosocial support to help them manage their distress. Evidenced-based technological interventions have the potential to aid caregivers in managing distress. OBJECTIVE: The objective of our study was to describe caregiver perceptions of the usability and acceptability, and their suggestions for future adaptations, of a mobilized psychoeducation and skills-based intervention. METHODS: This study was a part of a larger trial of a mobilized psychoeducation and skills-based intervention (Psychoeducation and Skills-Based Mobilized Intervention [Pep-Pal]) for caregivers of patients with advanced illness. This substudy used a mixed-methods analysis of quantitative data from all 26 intervention participants and qualitative data from 14 intervention caregivers who completed the Pep-Pal intervention. The qualitative semistructured individual interviews, which we conducted within the first 4 weeks after participants completed the intervention, assessed the acceptability and usability of Pep-Pal. Additionally, the qualitative interviews provided contextual evidence of how the intervention was helpful to interviewees in unanticipated ways. We conducted applied thematic analysis via independent review of transcripts to extract salient themes. RESULTS: Overall, caregivers of patients with advanced cancer deemed Pep-Pal to be acceptable in all Web-based sessions except for Improving Intimacy. Caregivers perceived the program to be of use across the areas they needed and in others that they had not anticipated. Caregiver recommendations of key changes for the program were to include more variety in caregiver actors in sessions, change the title of Improving Intimacy to Improving Relationships, provide an audio-only option in addition to video, and change the format of the mobilized website program to a stand-alone mobile app. CONCLUSIONS: The valuable feedback in key areas from individual interviews will be integrated into the final version of Pep-Pal that will be tested in a fully powered randomized clinical trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT03002896; https://clinicaltrials.gov/ct2/show/NCT03002896 (Archived by WebCite at http://www.webcitation.org/76eThwaei).

14.
Support Care Cancer ; 27(6): 2329-2337, 2019 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-30353229

RESUMEN

PURPOSE: Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is a demanding treatment requiring caregiver support. The pre-transplant period is particularly stressful. How patient and caregiver dyads respond to these stressors can impact post-transplant outcomes. The purpose of this cross-sectional study was to assess pre-transplant patient and caregiver distress, patient quality of life (pQoL), and simultaneously investigate relationship between caregiver distress, patient distress, and patient QoL. METHODS: We measured caregiver anxiety, depressive symptoms, perceived stress, sleep quality, caregiver burden, and pQoL in148 dyads compared to clinical thresholds or population norms. To reduce comparisons, we created a composite distress score from affective measures. Associations within dyads were examined via correlation and path analysis. RESULTS: Most dyads scored above norms for psychological measures. Patient distress was positively associated with caregiver distress. Higher caregiver distress significantly predicted poorer pQoL after accounting for the interdependence of patient and caregiver distress. Specifically, patients' physical functioning was the primary driver of this interrelationship. CONCLUSIONS: Allo-HSCT patients and their caregivers reported elevated distress pre-transplant. Both patient and caregiver distress contributed to pQoL, with patients' physical functioning accounting significantly for caregiver well-being. Supporting the patient-caregiver dyad before transplantation is a priority for supportive services.


Asunto(s)
Cuidadores/psicología , Trasplante de Células Madre Hematopoyéticas/psicología , Calidad de Vida/psicología , Acondicionamiento Pretrasplante/psicología , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
15.
Med Clin North Am ; 101(6): 1075-1084, 2017 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-28992855

RESUMEN

Adolescent and young adult (AYA) individuals with a history of cancer make up a fraction of the total number of cancer survivors in the United States, but they represent a population with needs distinct from either the childhood or the older adult cancer populations. Fertility concerns, psychosocial factors, and health care access are just a few of the distinguishing characteristics. Caring for AYA cancer survivors presents unique opportunities for primary care providers to collaborate with oncology colleagues to minimize the long-term cancer burden.


Asunto(s)
Accesibilidad a los Servicios de Salud/organización & administración , Neoplasias/psicología , Atención Primaria de Salud/organización & administración , Sobrevivientes/psicología , Transición a la Atención de Adultos/organización & administración , Adolescente , Consejo , Fertilidad , Promoción de la Salud , Humanos , Salud Mental , Neoplasias/complicaciones , Derivación y Consulta , Estados Unidos , Adulto Joven
16.
JMIR Res Protoc ; 6(6): e120, 2017 06 22.
Artículo en Inglés | MEDLINE | ID: mdl-28642213

RESUMEN

BACKGROUND: Caregivers of cancer patients experience significant burden and distress including depression and anxiety. We previously demonstrated the efficacy of an eight session, in-person, one-on-one stress management intervention to reduce distress in caregivers of patients receiving allogeneic hematopoietic stem cell transplants (allo-HSCT). OBJECTIVE: The objective of this study was to adapt and enhance the in-person caregiver stress management intervention to a mobilized website (eg, tablet, smartphone, or computer-based) for self-delivery in order to enhance dissemination to caregiver populations most in need. METHODS: We used an established approach for development of a mhealth intervention, completing the first two research and evaluation steps: Step One: Formative Research (eg, expert and stakeholder review from patients, caregivers, and palliative care experts) and Step Two: Pretesting (eg, Focus Groups and Individual Interviews with caregivers of patients with autologous HSCT (auto-HSCT). Step one included feedback elicited for a mock-up version of Pep-Pal session one from caregiver, patients and clinician stakeholders from a multidisciplinary palliative care team (N=9 caregivers and patient stakeholders and N=20 palliative care experts). Step two included two focus groups (N=6 caregivers) and individual interviews (N=9 caregivers) regarding Pep-Pal's look and feel, content, acceptability, and potential usability/feasibility. Focus groups and individual interviews were audio-recorded. In addition, individual interviews were transcribed, and applied thematic analysis was conducted in order to gain an in-depth understanding to inform the development and refinement of the mobilized caregiver stress management intervention, Pep-Pal (PsychoEducation and skills for Patient caregivers). RESULTS: Overall, results were favorable. Pep-Pal was deemed acceptable for caregivers of patients receiving an auto-HSCT. The refined Pep-Pal program consisted of 9 sessions (Introduction to Stress, Stress and the Mind Body Connection, How Thoughts Can Lead to Stress, Coping with Stress, Strategies for Maintaining Energy and Stamina, Coping with Uncertainty, Managing Changing Relationships and Communicating Needs, Getting the Support You Need, and Improving Intimacy) delivered via video instruction through a mobilized website. CONCLUSIONS: Feedback from stakeholder groups, focus groups, and individual interviews provided valuable feedback in key areas that was integrated into the development of Pep-Pal with the goal of enhancing dissemination, engagement, acceptability, and usability.

17.
Support Care Cancer ; 25(8): 2515-2523, 2017 08.
Artículo en Inglés | MEDLINE | ID: mdl-28283805

RESUMEN

PURPOSE: Caregivers of cancer patients face challenges impacting their physical, psychological and social well-being that need attention in the form of well-designed and tested interventions. We created an eight-session individual stress management intervention for caregivers of allogeneic hematopoietic stem cell transplant (Allo-HSCT) recipients. This intervention, tested by randomized control trial, proved effective in decreasing distress. Herein, we describe the intervention including theoretical framework, development, and elements of fidelity. Implementation challenges along with recommendations for refinement in future studies are discussed with the goal of replication and dissemination. METHODS: Seventy-four of 148 caregivers received stress management training following randomization. The intervention occurred during the 100-day post-transplant period when caregivers are required. The training provided integrated cognitive behavioral strategies, psychoeducation, and problem-solving skills building as well as use of a biofeedback device. RESULTS: Seventy percent of caregivers completed all eight sessions indicating good acceptability for the in-person intervention; however, most caregivers did not reliably use the biofeedback device. The most common reason for drop-out was their patient becoming gravely ill or patient death. Few caregivers dropped out because of study demands. The need for flexibility in providing intervention sessions was key to retention. CONCLUSION: Our evidence-based stress management intervention for Allo-HSCT caregivers was feasible. Variability in acceptability and challenges in implementation are discussed and suggestions for refinement of the intervention are outlined. Dissemination efforts could improve by using alternative methods for providing caregiver support such as telephone or video chat to accommodate caregivers who are unable to attend in-person sessions.


Asunto(s)
Cuidadores/psicología , Trasplante de Células Madre Hematopoyéticas/psicología , Neoplasias/psicología , Estrés Psicológico/terapia , Acondicionamiento Pretrasplante/psicología , Trasplante Homólogo/psicología , Estudios de Factibilidad , Femenino , Humanos , Masculino , Neoplasias/patología , Estrés Psicológico/psicología
19.
J Cancer Surviv ; 10(1): 96-102, 2016 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-26070279

RESUMEN

PURPOSE: Delivery of follow-up care to breast cancer survivors is an important public health issue due to their increasing number and the anticipated shortage of oncology providers. This study evaluated adherence to American Society of Clinical Oncology (ASCO)-recommended surveillance tests in a bi-ethnic cohort of long-term breast cancer survivors. METHODS: Women (n = 298) in Arizona and Colorado who had previously participated in a population-based study of breast cancer were enrolled into a follow-up survey approximately 6 years post-diagnosis. ASCO-recommended surveillance (mammogram, clinical breast, and physical exam), other non-recommended tests (e.g. tumor markers, imaging scans), and patients' beliefs were compared by provider type using multivariate logistic regression. RESULTS: No significant differences in patient self-report of physical exam or mammography prevalence by provider type was observed after adjustment for covariates. Receipt of surveillance tests not recommended by ASCO was higher among survivors who saw an oncologist (tumor marker tests: OR = 3.0, 95 % CI 1.5-5.8; and other blood tests: OR = 2.0, 95 % CI 1.1-3.5) as compared to those who routinely see a primary care physician. These observed differences persisted after adjustment for age, stage, lapse in insurance, education, or ethnicity. CONCLUSIONS: Although overutilization of non-recommended tests was observed among women who saw an oncologist, the majority of breast cancer survivors received ASCO-recommended surveillance regardless of provider type. IMPLICATIONS FOR CANCER SURVIVORS: Most breast cancer survivors receive recommended surveillance tests, whether their care is managed by a primary care physician or an oncologist, but some women receive unnecessary testing. Women should talk with their providers about tests recommended based on their past breast cancer diagnosis.


Asunto(s)
Neoplasias de la Mama , Médicos de Atención Primaria/estadística & datos numéricos , Pautas de la Práctica en Medicina/estadística & datos numéricos , Especialización/estadística & datos numéricos , Sobrevivientes/psicología , Adulto , Anciano , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/mortalidad , Neoplasias de la Mama/rehabilitación , Continuidad de la Atención al Paciente/normas , Continuidad de la Atención al Paciente/estadística & datos numéricos , Pruebas Diagnósticas de Rutina/normas , Pruebas Diagnósticas de Rutina/estadística & datos numéricos , Femenino , Estudios de Seguimiento , Adhesión a Directriz/estadística & datos numéricos , Humanos , Oncología Médica/normas , Persona de Mediana Edad , Pautas de la Práctica en Medicina/normas , Especialización/normas , Encuestas y Cuestionarios , Recursos Humanos
20.
J Pediatr Nurs ; 30(5): 724-31, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-26278341

RESUMEN

PURPOSE: Describe the development and evolution of a primary-care-based, multidisciplinary clinic to support the ongoing care of adult survivors of childhood cancer. METHODS: A consultative clinic for adult survivors of childhood cancer has been developed that is located in an adult, academic internal medicine setting and is based on a long-term follow-up clinic model available at Children's Hospital Colorado. RESULTS: The clinic opened in July 2008. One hundred thirty-five patients have been seen as of April 2014. Referrals and clinic capacity have gradually increased over time, and a template has been developed in the electronic medical record to help facilitate completion of individualized care plan letters. CONCLUSIONS: A primary care-based, multidisciplinary consultative clinic for adults with a history of childhood cancer survivor is feasible and actively engages adult primary care resources to provide risk-based care for long-term pediatric cancer survivors. This model of care planning can help support adult survivors of pediatric cancer and their primary care providers in non-academic, community settings as well.


Asunto(s)
Instituciones de Atención Ambulatoria/organización & administración , Planificación en Salud/organización & administración , Neoplasias/terapia , Atención Primaria de Salud/organización & administración , Transición a la Atención de Adultos/organización & administración , Adolescente , Adulto , Niño , Preescolar , Enfermedad Crónica/terapia , Colorado , Manejo de la Enfermedad , Femenino , Humanos , Comunicación Interdisciplinaria , Masculino , Neoplasias/diagnóstico , Innovación Organizacional , Evaluación de Resultado en la Atención de Salud , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud , Sobrevivientes , Adulto Joven
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