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BACKGROUND: Social isolation and social connectedness are health determinants and aspects of social well-being with strong associations with psychological distress. This study evaluated relationships among social isolation, social connectedness, and psychological distress (i.e., depression, anxiety) over 1 year in young adult (YA) cancer survivors 18-39 years old. METHODS: Participants were YAs in a large cohort study that completed questionnaires every 2 months for 1 year. Social isolation, aspects of social connectedness (i.e., companionship, emotional support, instrumental support, and informational support), depression, and anxiety were assessed with Patient-Reported Outcomes Measurement Information System short form measures. Mixed-effect models were used to evaluate changes over time. Confirmatory factor analysis and multilevel structural equation modeling were used to define social connectedness as a latent construct and determine whether relationships between social isolation and psychological distress were mediated by social connectedness. RESULTS: Participants (N = 304) were mean (M) = 33.5 years old (SD = 4.7) and M = 4.5 years (SD = 3.5) post-initial cancer diagnosis. Most participants were female (67.4%) and non-Hispanic White (68.4%). Average scores for social well-being and psychological distress were within normative ranges and did not change (p values >.05). However, large proportions of participants reported at least mild social isolation (27%-30%), depressive symptoms (36%-37%), and symptoms of anxiety (49%-51%) at each time point. Across participants, more social isolation was related to less social connectedness (p values <.001), more depressive symptoms (p < .001), and more symptoms of anxiety (p < .001). Social connectedness mediated the relationship between social isolation and depression (p = .004), but not anxiety (p > .05). CONCLUSIONS: Social isolation and connectedness could be intervention targets for reducing depression among YA cancer survivors.
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BACKGROUND: Men who have sex with men (MSM) face many challenges and biases in healthcare. Within urology there is a need to better understand how prostate cancer impacts MSM given the unique ways in which side effects that accompany treatment may affect this population. The goal of this study is to explore the experience of MSM with prostate cancer to advance the existing literature in this area and inform implementation and delivery of clinical practice and policy guidelines. METHODS: Four focus groups were conducted with a semi-structured interview guide. Using a phenomenological qualitative approach consistent with grounded theory [1] and naturalistic inquiry principles we sought to better understand the direct experiences of MSM with prostate cancer. Audio transcriptions were thematically analyzed to identify themes that impact MSM throughout their prostate cancer journey. An iterative, team-wide classification process was used to identify, organize, and group common codes into higher-order categories and themes. RESULTS: Patient's choice of provider and their interactions with the healthcare system were strongly impacted by their sexual identities. Participants commented on navigating the heteronormative healthcare environment and the impact of assumptions they encountered. MSM experienced the sexual side effects of prostate cancer treatment in unique ways. Issues with erectile dysfunction and ejaculatory dysfunction had significant impacts on patient's sexual experience, with some describing being forced to explore new modes of sexual expression. Anejaculation was a theme that was distressing for many participants. The emotional impact of a prostate cancer diagnosis was significant in the men interviewed. Common themes included loss of identity and fear for future relationships. CONCLUSIONS: MSM have unique concerns after prostate cancer treatment that differ from men who don't identify as MSM. It is critical that providers familiarize themselves with the concerns of this patient population regarding prostate cancer treatment. An important step toward reducing heteronormative bias in prostate cancer care is to better understand the goals, identity, and sexual practices of MSM and to provide informed anticipatory guidance.
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Disfunção Ejaculatória , Neoplasias da Próstata , Minorias Sexuais e de Gênero , Masculino , Humanos , Grupos Focais , Homossexualidade Masculina , Neoplasias da Próstata/terapia , ViésRESUMO
Occupational therapy practitioners are uniquely positioned to address the needs of cancer survivors. This study aimed to understand the complex needs of survivors using The Canadian Occupational Performance Measure and in-depth interviewing. A convergent, mixed methods approach was utilized with a purposive sample of 30 cancer survivors. The results indicate that while the COPM can be a practical tool to address basic occupational performance problems, the in-depth interviews exposed these challenges are intricately connected to identity, relationships, and roles. Implications for occupational therapy practitioners include a critical approach to evaluation and interventions to capture the complex needs of survivors.
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Sobreviventes de Câncer , Neoplasias , Terapia Ocupacional , Humanos , Atividades Cotidianas , CanadáRESUMO
BACKGROUND: Social isolation and connectedness are social determinants of health that have demonstrated effects on cancer-related outcomes. These constructs have been systematically evaluated among pediatric and older adult cancer populations. In this review, the authors evaluated the prevalence, correlates, and psychosocial implications of social isolation and connectedness among young adult (YA) cancer survivors aged 18-39 years. METHODS: Peer-reviewed articles published in English before June 2021 were identified from database searches and included articles' reference lists according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Included articles described studies that assessed social isolation and/or connectedness among YA cancer survivors. RESULTS: In total, 5094 unique records were identified; 4143 were excluded after title/abstract screening, and 907 were excluded after full-text review. Forty-four articles were included. Few studies used validated measures or directly assessed social isolation or connectedness. Social isolation was similarly prevalent among YAs and older cancer survivors and noncancer populations. Demographic, clinical, and behavioral risk and protective factors for social isolation were identified. Social isolation was related to worse psychological well-being, whereas social connectedness was often, but not always, related to better psychological well-being. CONCLUSIONS: This growing literature underscores the relevance of social isolation and connectedness as important health determinants among YA cancer survivors. The identified risk and protective factors can identify YAs who especially may benefit from screening for social isolation. Future studies are needed that directly, reliably, and validly evaluate social isolation and connectedness to inform the development of interventions to decrease isolation and increase connectedness.
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Sobreviventes de Câncer , Neoplasias , Humanos , Adulto Jovem , Criança , Idoso , Isolamento Social/psicologia , Neoplasias/psicologiaRESUMO
BACKGROUND: The American Society of Breast Surgeons released a consensus statement that genetic testing should be made available to all patients with a personal history of breast cancer. However, it is not clear whether physicians feel comfortable with universal genetic testing (UGT) or if they have sufficient knowledge to interpret results and manage them appropriately. OBJECTIVE: The purpose of this study was to explore breast surgeons' attitudes toward UGT. METHODS: Breast surgeons were consented and scheduled for a semi-structured virtual interview. Transcripts were uploaded into qualitative analysis software where they were exhaustively and iteratively coded. Codes were then organized into higher-order categories and themes and data saturation were assessed. RESULTS: Thirty-one surgeons completed the qualitative interview. Most surgeons practiced in the academic or community setting and most practiced in the Midwest (71.0%). The majority (90.3%) reported having a structured genetics program. The majority (96.8%) referred their patients to genetics for counseling and most preferred ordering testing through a genetic services provider. Some surgeons had concerns about access to genetic services. A minority of surgeons order UGT for all newly diagnosed breast cancer patients. The majority of respondents thought that more training in genetics was needed for surgeons. Many surgeons expressed concern about the psychosocial effects of UGT on patients. CONCLUSIONS: Many surgeons expressed concerns about UGT, mainly related to discomfort with their training, access to genetic services, and the psychosocial impact on their patients. Future work is needed to determine how to improve surgeon's comfort level in implementing UGT.
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Neoplasias da Mama , Cirurgiões , Humanos , Feminino , Cirurgiões/psicologia , Neoplasias da Mama/genética , Neoplasias da Mama/cirurgia , Testes Genéticos , Atitude do Pessoal de SaúdeRESUMO
PURPOSE: To empirically assign severity levels (e.g., mild, moderate) to four relatively new patient-reported outcome measures (PROMs) for adults with acquired cognitive/language disorders. They include the Communicative Participation Item Bank, the Aphasia Communication Outcome Measure, and Neuro-QoL's item banks of Cognitive Function (v2.0) and Ability to Participate in Social Roles and Activities (v1.0). METHOD: We conducted 17 focus groups that comprised 22 adults with an acquired cognitive/language disorder from stroke, Parkinson's disease, or traumatic brain injury; 30 care partners of an adult with an acquired cognitive/language disorder; and 42 speech-language pathologists who had experience assessing/treating individuals with those and other cognitive/language disorders. In a small, moderated focus-group format, participants completed "PROM-bookmarking" procedures: They discussed hypothetical vignettes based on PROM item responses about people with cognitive/language disorders and had to reach consensus regarding whether their symptoms/function should be categorized as within normal limits or mild, moderate, or severe challenges. RESULTS: There was generally good agreement among the stakeholder groups about how to classify vignettes, particularly when they reflected very high or low functioning. People with aphasia described a larger range of functional communication challenges as "mild" compared to other stakeholder types. Based on a consensus across groups, we present severity levels for specific score ranges for each PROM. CONCLUSION: Standardized, stakeholder-informed severity levels that aid interpretation of PROM scores can help clinicians and researchers derive better clinical meaning from those scores, for example, by identifying important clinical windows of opportunity and assessing when symptoms have returned to a "normal" range.
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Afasia , Transtornos da Linguagem , Humanos , Adulto , Qualidade de Vida/psicologia , Afasia/terapia , Cognição/fisiologia , Idioma , Medidas de Resultados Relatados pelo PacienteRESUMO
OBJECTIVE: To identify the most important health-related quality of life (HRQOL) domains and patient-reported outcomes after upper extremity transplantation (UET) in individuals with upper extremity amputation. DESIGN: Verbatim audio-recordings of individual interviews and focus groups were analyzed using qualitative, grounded theory-based methods to identify important domains of HRQOL and provide guidance for outcomes measurement after UET. SETTING: Individual interviews were conducted by phone. Focus groups were conducted at 5 upper extremity vascularized composite allotransplantation (VCA) centers in the US and at an international conference of VCA experts. PARTICIPANTS: Individual phone interviews were conducted with 5 individuals with lived experience of UET. Thirteen focus groups were conducted with a total of 59 clinical professionals involved in UET. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Not applicable. RESULTS: Twenty-eight key HRQOL domains were identified, including physical functioning and medical complications, positive and negative emotional functioning, and social participation, relations, and independence. We identified key constructs for use in evaluation of the potentially substantial physical, medical, social, and emotional effects of UET. CONCLUSIONS: This study provides an overview of the most important issues affecting HRQOL after UET, including several topics that are unique to individuals with UET. This information will be used to establish systematic, comprehensive, and longitudinal measurement of post-UET HRQOL outcomes.
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Qualidade de Vida , Extremidade Superior , Humanos , Extremidade Superior/cirurgia , Amputação Cirúrgica , Grupos FocaisRESUMO
Objective: Despite more women living with metastatic breast cancer (MBC), this population is underrepresented in cancer survivorship research. Few studies have assessed how women with MBC cope with their cancer experience. This qualitative study describes the coping strategies and psychosocial resources utilized by women living with MBC.Methods: Twenty-two women with MBC participated in four focus groups. Transcripts were analyzed using a general inductive approach. Codes derived from participants' responses were subsequently condensed into themes.Results: We identified 12 coping strategies and psychosocial resources and grouped them into five themes: Behavioral Coping Strategies (i.e. stress management, active coping and planning); Cognitive Coping Strategies and Psychological Resources (i.e. cognitive reappraisal, optimism, mindfulness, positive thinking, and religious coping); Existential Approach-Oriented Coping (i.e. acceptance, values-based living, and identity integration); Avoidance (i.e. avoidant coping); and Interpersonal Resources and Seeking Social Support (i.e. social support).Conclusions: Women living with MBC utilize several engagement and disengagement coping strategies, as well as intrapersonal and interpersonal resources. This study provides useful perspectives of women living with MBC that may inform the development of psychosocial interventions. Further research is needed to assess coping strategies and psychosocial resources across different subgroups of MBC patients and determine their impact on cancer outcomes.
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Parental mental health socialization is a process by which parents shape how youth develop and maintain beliefs, attitudes, and behaviors regarding mental health and help-seeking behaviors. Although culture shapes parental mental health socialization, few studies have examined specific parental socialization practices regarding mental health and help-seeking, especially as a culturally anchored process. Using a qualitative approach, this study explores youth-reported parental socialization of mental health within Chinese American families by examining focus group data from 69 Chinese American high school and college students. Findings revealed that youth received parental messages that conveyed culturally anchored conceptualizations of mental health that included stigmatized views of mental illness and perceptions of mental distress as not a legitimate problem. Parents responded to youth distress in culturally consonant ways: by encouraging culturally specific coping methods, dismissing or minimizing distress, or responding with silence. Youth engaged in the active interpretation of parental messages through cultural brokering, bridging the gap between their parents' messages and mainstream notions of mental health and help-seeking. Overall, our findings point to the significant role of culture in parental mental health socialization in Chinese American families and the need to integrate culturally specific understandings of mental health into future interventions for Asian American youth.
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Asiático , Socialização , Humanos , Adolescente , Estados Unidos , Saúde Mental , População do Leste Asiático , Pais/psicologiaRESUMO
BACKGROUND: Physicians' interest in the health and well-being of their patients is a tenet of medical practice. Physicians' ability to act upon this interest by caring for and about their patients is central to high-quality clinical medicine and may affect burnout. To date, a strong theoretical and empirical understanding of physician caring does not exist. To establish a practical, evidence-based approach to improve health care delivery and potentially address physician burnout, we sought to identify and synthesize existing conceptual models, frameworks, and definitions of physician caring. METHODS: We performed a scoping review on physician caring. In November 2019 and September 2020, we searched PubMed MEDLINE, Embase, PsycINFO, CINAHL, and CENTRAL Register of Controlled Trials to identify conceptual models, frameworks, and definitions of physician caring. Eligible articles involved discussion or study of care or caring among medical practitioners. We created a content summary and performed thematic analysis of extracted data. RESULTS: Of 11,776 articles, we reviewed the full text of 297 articles; 61 articles met inclusion criteria. Commonly identified concepts referenced Peabody's "secret of care" and the ethics of care. In bioethics, caring is described as a virtue. Contradictions exist among concepts of caring, such as whether caring is an attitude, emotion, or behavior, and the role of relationship development. Thematic analysis of all concepts and definitions identified six aspects of physician caring: (1) relational aspects, (2) technical aspects, (3) physician attitudes and characteristics, (4) agency, (5) reciprocity, and (6) physician self-care. DISCUSSION: Caring is instrumental to clinical medicine. However, scientific understanding of what constitutes caring from physicians is limited by contradictions across concepts. A unifying concept of physician caring does not yet exist. This review proposes six aspects of physician caring which can be used to develop evidence-based approaches to improve health care delivery and potentially mitigate physician burnout.
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Esgotamento Profissional , Médicos , Esgotamento Psicológico , Emoções , Pessoal de Saúde , Humanos , Médicos/psicologiaRESUMO
OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.
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COVID-19 , Sobreviventes de Câncer , Neoplasias , Adolescente , Sobreviventes de Câncer/psicologia , Cuidadores/psicologia , Estresse Financeiro , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Adulto JovemRESUMO
PURPOSE: To conduct a secondary analysis focused on health-related quality of life (HRQOL) among caregivers engaged in a 12-week complementary therapy sequential multiple assignment randomized trial (SMART) of reflexology and/or meditative practices (MP), to manage cancer patients' symptoms. METHODS: In this SMART, patient-caregiver dyads were initially randomized to 4 weeks of caregiver-delivered reflexology for the patient (N = 150), MP with the patient (N = 150), or control (N = 47). After 4 weeks, dyads with patients not improving on fatigue (non-responders, n = 69 to reflexology and n = 57 to MP) were re-randomized to continue the same therapy or add the other therapy for an additional 4 weeks. Week-12 caregiver HRQOL was measured using the Patient Reported Outcomes Measurement Information System (PROMIS) Profile-29 and the Caregiver Reaction Assessment Tool (CRAT) for caregiver burden; scores were analyzed using general linear models. RESULTS: In the comparison of 4 adaptive intervention sequences: reflexology for 8 weeks, reflexology for 4 weeks followed by MP for 4 weeks if no response to reflexology, MP for 8 weeks, and MP for 4 weeks followed by reflexology for 4 weeks if no response to MP, there were no differences in PROMIS-29 scores. However, CRAT domains of impact on schedule, family support, and finances worsened when adding reflexology after the first 4 weeks of MP. The CRAT domain of health worsened by adding either intervention compared to continuing the same one. CONCLUSIONS: Clinicians should be aware that caregiver engagement in more than one complementary therapy may increase caregiver burden in some domains but not affect other HRQOL domains. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02759146.
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Meditação , Neoplasias , Cuidadores , Fadiga , Humanos , Neoplasias/complicações , Neoplasias/terapia , Qualidade de VidaRESUMO
PURPOSE: This study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2). METHODS: TOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction). RESULTS: Focus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants "agreed" to "strongly agreed" with positive statements about the weekly sessions and the overall program. CONCLUSION: TOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL. TRIAL REGISTRATION: NCT05048316, September 17, 2021; NCT05054569, September 23, 2021.
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Sobreviventes de Câncer , Neoplasias , Telemedicina , Humanos , Adulto Jovem , Qualidade de Vida , Intervenção Psicossocial , Estudos de Viabilidade , Neoplasias/terapiaRESUMO
OBJECTIVES: To develop clinically relevant interpretive standards for the Spinal Cord Injury-Functional Index/Capacity (SCI-FI/C) Basic Mobility and Self-Care item bank scores. DESIGN: Modified "bookmarking" standard-setting methodology, including 2 stakeholder consensus meetings with individuals with spinal cord injury (SCI) and SCI clinicians, respectively, and a final, combined (consumers and clinicians) "convergence" meeting. SETTING: Two SCI Model System centers in the United States. PARTICIPANTS: Fourteen adults who work with individuals with traumatic SCI and 14 clinicians who work with individuals with SCI. MAIN OUTCOME MEASURES: Placement of bookmarks between vignettes based on SCI-FI Basic Mobility and Self-Care T scores. Bookmarks were placed between vignettes representing "No Problems," "Mild Problems," "Moderate Problems," and "Severe Problems" for each item bank. RESULTS: Each consensus group resulted in a single set of scoring cut points for the SCI-FI/C Basic Mobility and Self-Care item banks. The cut points were similar but not identical between the consumer and clinician groups, necessitating a final convergence meeting. For SCI-FI/C Basic Mobility, the convergence group agreed on cut scores of 61.25 (no problems/mild problems), 51.25 (mild problems/moderate problems), and 41.25 (moderate problems/severe problems). For SCI-FI/C Self-Care, the convergence group agreed on cut scores of 56.25 (no/mild), 51.25 (mild/moderate), and 38.75 (moderate/severe). CONCLUSIONS: The results of this study provide straightforward interpretive guidelines for SCI researchers and clinicians using the SCI-FI/C Basic Mobility and Self-Care instruments. These results are appropriate for the full bank, computer adaptive test, and short-form versions of the SCI-FI/C Basic Mobility and Self-Care item banks.
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Autocuidado , Traumatismos da Medula Espinal , Atividades Cotidianas , Adulto , Avaliação da Deficiência , Humanos , Psicometria , Estados UnidosRESUMO
BACKGROUND: Fear of recurrence (FoR) is prevalent among breast cancer survivors (BCS) and may be exacerbated by avoidance coping. This study examined BCS with avoidance coping and their engagement in a FoR eHealth intervention (FoRtitude). METHODS: BCS (N = 196) with elevated FoR participated in FoRtitude. Patient-reported measures assessed avoidance coping with FoR and baseline emotional and behavioral health. Intervention engagement was measured quantitatively (e.g., website logins, telecoaching attendance) and qualitatively (i.e., telecoaching notes). RESULTS: 38 BCS (19%) endorsed avoidance coping, which was associated with more severe post-traumatic anxiety-related symptoms and worse global mental health (ps < .05), but not anxiety (p = .19), depression (p = .11), physical health (p = .12), alcohol consumption (p = .85), or physical activity (p = .39). Avoidance coping was not associated with engagement levels (ps > .05) but did characterize engagement-related motivators and barriers. CONCLUSIONS: Avoidance coping was not a barrier to FoRtitude engagement. eHealth delivery is a promising modality for engaging survivors with avoidance coping in FoR interventions.
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Neoplasias da Mama , Sobreviventes de Câncer , Telemedicina , Adaptação Psicológica , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Medo/psicologia , Feminino , Humanos , Recidiva Local de Neoplasia/psicologia , Qualidade de Vida/psicologia , Sobreviventes/psicologiaRESUMO
BACKGROUND: This was a secondary analysis of a pilot randomized controlled trial (RCT) of mindfulness-based stress reduction (MBSR) among young adult (YA) survivors of cancer, which showed preliminary evidence for improving psychosocial outcomes. Secondary outcomes assessed were the feasibility of collecting biological data from YAs and preliminary effects of MBSR on markers of inflammation and cardiovascular function. METHOD: Participants were randomized to 8-week MBSR or a waitlist control condition. Participants provided whole blood spot samples for analysis of C-reactive protein (CRP) and interleukin (IL)-6 as well as blood pressure data in-person at baseline and 16-week follow-up. Feasibility was assessed with rates of providing biological data. Linear mixed effects modeling was used to evaluate preliminary effects of MBSR on inflammatory markers and blood pressure over time. RESULTS: Of 126 total participants enrolled, 77% provided biological data at baseline (n = 48/67 MBSR, n = 49/59 control). At 16 weeks, 97% of the 76 retained participants provided follow-up biological data (n = 34/35 MBSR, n = 40/41 control). Relative to the control group, MBSR was associated with decreased systolic blood pressure (p = 0.042, effect sizes (ES) = 0.45) and decreased diastolic blood pressure (p = 0.017, ES = 0.64). There were no changes in CRP or IL-6. CONCLUSION: This was the first study to explore the feasibility of collecting biological data from YA survivors of cancer and assess preliminary effects of MBSR on inflammatory and cardiovascular markers in an RCT. Minimally invasive biological data collection methods were feasible. Results provide preliminary evidence for the role of MBSR in improving cardiovascular outcomes in this population, and results should be replicated.
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Atenção Plena , Neoplasias , Biomarcadores , Pressão Sanguínea , Proteína C-Reativa , Humanos , Interleucina-6 , Atenção Plena/métodos , Neoplasias/terapia , Projetos Piloto , Estresse Psicológico/psicologia , Sobreviventes/psicologia , Resultado do Tratamento , Adulto JovemRESUMO
PURPOSE: To examine how treatment delays brought on by the COVID-19 pandemic impacted the physical and emotional well-being of physicians treating these patients. METHODS: A cross-sectional survey of physician breast specialists was posted from April 23rd to June 11th, 2020 on membership list serves and social media platforms of the National Accreditation Program for Breast Centers and the American Society of Breast Surgeons. Physician well-being was measured using 6 COVID-19 burnout emotions and the 4-item PROMIS short form for anxiety and sleep disturbance. We examined associations between treatment delays and physician well-being, adjusting for demographic factors, COVID-19 testing and ten COVID-19 pandemic concerns. RESULTS: 870 physicians completed the survey, 61% were surgeons. The mean age of physicians was 52 and 548 (63.9%) were female. 669 (79.4%) reported some delay in patient care as a result of the COVID-19 pandemic. 384 (44.1%) and 529 (60.8%) of physicians scored outside normal limits for anxiety and sleep disturbance, respectively. After adjusting for demographic factors and COVID-19 testing, mean anxiety and COVID-19 burnout scores were significantly higher among physicians whose patients experienced either delays in surgery, adjuvant chemotherapy, radiation, breast imaging or specialty consultation. A multivariable model adjusting for ten physician COVID-19 concerns and delays showed that "delays will impact my emotional well-being" was the strongest concern associated with anxiety, sleep disturbance and COVID-19 burnout factors. CONCLUSIONS: Breast cancer treatment delays during the initial surge of the COVID-19 pandemic in the United States were associated with a negative impact on physician emotional wellness.
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Neoplasias da Mama/terapia , Esgotamento Profissional , COVID-19 , Oncologistas , Tempo para o Tratamento , Ansiedade/psicologia , Neoplasias da Mama/mortalidade , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Oncologistas/psicologia , Sono , Cirurgiões/psicologia , Inquéritos e Questionários , Estados UnidosRESUMO
BACKGROUND: The recent data on decision regret of patients undergoing breast cancer surgery are sparse. METHODS: An electronic cross-sectional survey was distributed to Love Research Army volunteers ages 18-70 years who underwent breast cancer surgery from 2009 to 2020. Decision regret scores were compared among patients who underwent bilateral mastectomy (BM), unilateral mastectomy (UM), breast-conserving surgery (BCS), and BCS first (BCS followed by re-excision or mastectomy) and between procedures during different time periods. Multivariable logistic regression, adjusted for patient and tumor factors, was used to determine whether surgery type was associated with a regret score in the highest quartile range. RESULTS: The survey was completed by 2148 women, 1525 (71.0%) of whom reported their surgery choice and answered all questions on the regret scale. The mean age of the participants was 50 years, and the median year of surgery was 2014. The median decision regret score for all the patients was 5 (interquartile range [IQR], 0-20) on a 100-point scale. The regret score of 342 participants (22.4%) was 25 or higher (BCS, 20.2%; BCS first, 31.9%; UM, 30.8%; BM, 15.4%; p < 0.001). In the multivariable analysis, BM was associated with less regret than UM (odds ratio [OR], 0.40 (range, 0.27-0.58); p < 0.001), BCS (OR, 0.56 (range, 0.38-0.83; p = 0.003), or BCS first (OR, 0.32; range, 0.21-0.49; p < 0.001). During the three periods analyzed (2009-2012, 2013-2016, and 2017-2020), the BM and BCS patients had the lowest regret scores of all the surgical types. CONCLUSIONS: Decision regret was low among the patients undergoing breast cancer surgery but lowest among the BM patients after adjustment for clinical and tumor factors including complications.
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Neoplasias da Mama , Mastectomia Segmentar , Adolescente , Adulto , Idoso , Neoplasias da Mama/cirurgia , Estudos Transversais , Emoções , Feminino , Humanos , Mastectomia , Pessoa de Meia-Idade , Adulto JovemRESUMO
OBJECTIVE: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. METHODS: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. RESULTS: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. CONCLUSIONS: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.
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Preservação da Fertilidade , Infertilidade , Neoplasias , Adolescente , Comunicação , Humanos , Sobreviventes , Adulto JovemRESUMO
BACKGROUND: Medical students face significant stressors related to the intense rigors of their training and education. Accurate measurement of their stress is important to quickly identify, characterize and ameliorate these challenges. Existing measures have limitations that modern measurement approaches, such as item response theory (IRT), are able to address. This study presents the calibration and validation of a new IRT-based measure called the Medical Student Stress Scale (MSSS). METHODS: Following rigorous measurement development procedures described elsewhere, the authors created and tested a pool of 35 items with 348 1st - 4th year medical students along with demographic and external validity measures. Psychometric analysis included exploratory and confirmatory factor analyses, IRT modeling, and correlations with legacy measures. RESULTS: Of the original 35 items, 22 were retained based on their ability to discriminate, provide meaningful information, and perform well against legacy measures. The MSSS differentiated stress scores between male and female students, as well as between year in school. CONCLUSION: Developed with input from medical students, the MSSS represents a student-centered measurement tool that provides precise, relevant information about stress and holds potential for screening and outcomes-related applications.