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INTRODUCTION: Hematopoietic stem cell transplantation (HCT) is an intensive and invasive procedure used in cancer treatment that can lead to posttraumatic stress disorder (PTSD) symptoms. These symptoms are frequently overlooked in oncology and general health care settings. The suitability and utility of the Primary Care PTSD Screen for DSM-5 (PC-PTSD-5) within the cancer population remains uncertain. This study aims to evaluate its performance as a brief (five-item) case-finding screening alternative to the longer (20-item) PTSD Checklist for DSM-5 (PCL-5) in survivors who received an HCT 1 to 5 years ago. METHODS: A total of 817 cancer survivors completed the PC-PTSD-5 and PCL-5 during recruitment for a randomized clinical trial. Optimal cut scores for identifying probable PTSD and item performance were determined using indices correcting for chance and item response theory analyses. RESULTS: Of the HCT sample, 10.4% screened as positive for probable DSM-5 PTSD using the PCL-5. The PC-PTSD-5 exhibited strong internal consistency and significant associations with PCL-5 scores (total, r = .82; items, rs = .56-.61). A cutoff score of 2 provided optimal sensitivity for screening (κ[Se] = .95), whereas a cut score of 4 demonstrated the highest efficiency for detecting a probable DSM-5 PTSD diagnosis on the PCL-5 (κ[Eff] = .39). Item response theory analyses indicated that item 4 (numbing) of the PC-PTSD-5 yielded the most informative data, with other items potentially lacking incremental utility. CONCLUSION: Although not an instrument validation study, these findings offer efficient evidence for using the PC-PTSD-5 as a succinct screening tool among cancer survivors in a clinical context. TRIALS REGISTRATION: ClinicalTrials.gov, NCT04058795, registered 8/16/2019.
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PURPOSE: The American Society of Clinical Oncology Cancer Survivorship Committee established a task force to determine which survivorship care services were being denied by public and private payers for coverage and reimbursement. METHODS: A quantitative survey instrument was developed to determine the clinical practice-reported rates of coverage denials for evidence-based cancer survivorship care services. Additionally, qualitative interviews were conducted to understand whether coverage denials were based on payer policies, cost-sharing, or prior authorization. RESULTS: Of 122 respondents from 50 states, respondents reported that coverage denials were common ("always," "most of the time," or "some of the time") for maintenance therapies, screening for new primary cancers or cancer recurrence. Respondents reported that denials in coverage for maintenance therapies were highest for immunotherapy (41.74%) and maintenance chemotherapy (40.17%). Coverage denials for new primary cancer screenings were highest for Hodgkin lymphoma survivors needing a PET/CT scan (49.04%) and breast cancer survivors at a high risk of recurrence who needed an MRI (63.46%), respectively. More than half of survey respondents reported denials for symptom management and supportive care services. Fertility services, dental services when indicated, and mental health services were denied "always" or "most of the time" 23.1%, 22.5%, and 12.8%, respectively. Respondents reported they often had a process in place to automatically appeal denials for evidence-based services. The denial process, however, resulted in greater stress for the patient and provider. CONCLUSION: Our study demonstrates that additional advocacy with payers is needed to ensure that reimbursement policies are consistent with evidence-based survivorship care services.
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Sobreviventes de Câncer , Sobrevivência , Humanos , Tomografia por Emissão de Pósitrons combinada à Tomografia Computadorizada , Recidiva Local de Neoplasia , Mama , Cobertura do SeguroRESUMO
AIM: To investigate the feasibility and acceptability of the training process, procedures, measures and recruitment strategies necessary for a future investigation to test the reliability and validity of using positivity resonance measures in health care encounters. BACKGROUND: Although the measurement of positivity resonance is promising, and non-participant observation is considered effective, their approaches to studying nurse-patient relationships have not been fully explored. DESIGN: A mixed-methods observational study. METHODS: Video recordings of 30 nurse-patient dyads completing telehealth video visit encounters were edited and coded using behavioural indicators of positivity resonance. A post-visit survey gathered data on the participants' perceptions of positivity resonance and the study procedures. The research team completed memos and procedural logs to provide narrative data on the study's training, coding, recruitment and operational procedures. The study included 33 persons with cancer and 13 oncology nurses engaging in telehealth video visit encounters at an academic oncology ambulatory care center located in the southeastern United States. RESULTS: Study procedures were found to be feasible and acceptable to participants. An adequate sample of participants (N = 46) were enrolled and retained in the study. Interrater reliability, as evidenced by Cohen's weighted kappa, ranged from .575 to .752 and interclass correlation coefficients >.8 were attainable within a reasonable amount of time and with adequate training. Behavioural indicators of positivity resonance were observed in all telehealth visits and reported by the participants in the perceived positivity resonance survey. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist guided reporting. CONCLUSIONS: Designing research around the concept of positivity resonance is an innovative and feasible approach to exploring how rapport is cultivated within nurse-patient relationships. RELEVANCE TO PROFESSIONAL PRACTICE: Measuring positivity resonance may hold promise for exploring patient and nurse outcomes including trust, responsiveness, health-related behaviours, well-being, resilience and satisfaction. REPORTING METHOD: The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist guided the reporting of results to ensure that adequate details of the study were provided to ensure an accurate and complete report. PATIENT OR PUBLIC CONTRIBUTION: Planning of the research design and study procedures was done in consultation with nurse clinicians with experience with telehealth and managers responsible within the practice setting where the study was conducted. This ensured the study procedures were ethical, safe, secure and did not create unnecessary burden to the study participants. The study included collecting data from nurse and patient participants about the acceptability of the study procedures.
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Estudos de Viabilidade , Relações Enfermeiro-Paciente , Telemedicina , Comunicação por Videoconferência , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Idoso , Neoplasias/enfermagem , Reprodutibilidade dos Testes , Sudeste dos Estados UnidosRESUMO
The purpose of this study was to explore whether patient-centered communication (PCC) would partially mediate the relationship between social support and mental health status among adult survivors of non-Hodgkin's lymphoma (NHL). Methods: Secondary analysis of self-administered questionnaires mailed to 682 adults with NHL who were assumed living and had completed the baseline 2005 study (83% response rate). Adult NHL survivors (n = 566) and data were analyzed using descriptive statistics and the Sobel test. Results: PCC partially mediated the relationship between social support and three measures of mental health outcomes (SF-36 Mental Component Summary [SF36-MCS], Post-Traumatic Stress Disorder Checklist-Civilian Version [PCL-C], Impact of Cancer - Negative Impact Summary [IOCv2 NIS]). Results of the conservative Sobel test were significant (p < .01) in three mediation models. Conclusions: Future research should focus on testing interventions that target PCC and identifying additional mediators and moderators between social support and mental health outcomes among cancer survivors.
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Linfoma não Hodgkin , Qualidade de Vida , Adulto , Humanos , Qualidade de Vida/psicologia , Linfoma não Hodgkin/psicologia , Sobreviventes/psicologia , Apoio Social , Comunicação , Assistência Centrada no Paciente , Nível de SaúdeRESUMO
PURPOSE: The aim of this study was to examine relationships among uncertainty, PTSD symptoms (PTSS), and quality of life (QOL) in non-muscle-invasive bladder cancer (NMIBC) survivors. METHODS: Eligible NMIBC survivors were identified through the North Carolina Central Cancer Registry, and 398 survivors participated in a mailed survey that measured survivor's outcomes (uncertainty, PTSS, and QOL). Structural equation modeling was used to examine the mediating effect of uncertainty and PTSS on the association between personal characteristics and QOL in NMIBC survivors. RESULTS: NMIBC survivors experienced cancer-related uncertainty; higher uncertainty was associated with male, lower income, lack of cure, and lower cognition-ability. Uncertainty was significantly and negatively associated with QOL. In addition, PTSS completely mediated the effect of uncertainty on QOL, and higher PTSS had a strong association with poorer QOL. Additionally, comorbidities, cognition-general concerns, uncertainty, and PTSS had strong negative effects on QOL. CONCLUSION: This study has identified modifiable psychosocial factors which affect QOL in NMIBC survivors. The study findings can be used in the development of interventions to improve QOL for NMIBC survivors.
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Sobreviventes de Câncer , Transtornos de Estresse Pós-Traumáticos , Neoplasias da Bexiga Urinária , Sobreviventes de Câncer/psicologia , Humanos , Masculino , Qualidade de Vida/psicologia , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Transtornos de Estresse Pós-Traumáticos/etiologia , Inquéritos e Questionários , Sobreviventes/psicologia , Incerteza , Bexiga UrináriaRESUMO
BACKGROUND: The purpose of this manuscript is to describe health-related quality of life (HRQoL) outcomes in a United States (US)-based sample of multiple myeloma (MM) patients and identify characteristics associated with poor HRQoL. PATIENTS AND METHODS: MM patients identified through the Tumor Registry of a Southeastern US medical center were mailed surveys assessing patient characteristics and HRQoL outcomes. HRQoL outcomes were measured using PROMIS short form instruments which included measures of global health (global physical health and global mental health), physical function, and ability to participate in social roles and activities (social function). HRQoL domain scores were summarized, and best subset linear regression was used to identify predictors of HRQoL. RESULTS: A total of 690 patients completed and returned surveys for a response rate of 64.7%. Respondents reported global physical health (44.9), global mental health (47.5), and physical function (44.1) significantly worse than the general population mean of 50 (p < .0001). Social function (49.5) did not differ significantly (p = .09). Worse socioeconomic status, higher comorbidities, not being in remission, and past receipt of radiation therapy were significantly associated with worse HRQoL. Treatment status and time since diagnosis were not associated with HRQoL outcomes. CONCLUSIONS: Patients with MM have significantly worse HRQoL than the general population. These findings warrant increased attention from clinicians and researchers. More research is needed to better describe the relationship between treatment patterns and HRQoL in patients with MM, and to identify effective interventions.
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Mieloma Múltiplo , Qualidade de Vida , Adulto , Estudos Transversais , Humanos , Saúde Mental , Mieloma Múltiplo/terapia , Inquéritos e Questionários , Estados UnidosRESUMO
PURPOSE: This study explores human flourishing (HF) in adolescents with cancer (AC) as witnessed by their health care providers, and it develops a list of critical attributes associated with HF to describe the positive outcomes witnessed. DESIGN AND METHODS: Our study used a qualitative descriptive design incorporating data from an open-ended electronic survey and semi-structured individual interviews with 17 pediatric oncology health care providers. RESULTS: We found 3 major themes (positive forward motion, connectedness, and self-character) representing 11 critical attributes of human flourishing in AC: (1) initiative and enterprise, (2) positivity and evocativeness, (3) tranquility and maturity, (4) perseverance and tenacity, (5) compassion and empathy, (6) social engagement and connection, (7) wisdom and translation into life, (8) supportive background, (9) self-awareness and self-agency, (10) transcendence and full potential, and (11) meaning-making. CONCLUSIONS: Understanding the concept of HF as it applies to the needs of AC is a step toward establishing it as a comprehensive health care goal and toward developing care provider guidelines for its promotion. PRACTICE IMPLICATIONS: Given the attributes of HF in AC, nurses can consider HF as an ultimate nursing care outcome and should focus on goals of care beyond disease treatment and symptoms mitigation when providing care for this population. Holistic, individualized assessment, timely care during each phase of treatment, and developmentally tailored intervention should be provided.
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Pessoal de Saúde , Neoplasias , Adolescente , Criança , Empatia , Humanos , Oncologia , Neoplasias/terapia , Pesquisa QualitativaRESUMO
OBJECTIVE: To examine the effect of non-muscle-invasive bladder cancer (NMIBC) diagnosis and treatment on survivors' quality of life (QoL). PATIENTS AND METHODS: Of the 5979 patients with NMIBC diagnosed between 2010 and 2014 in North Carolina, 2000 patients were randomly selected to be invited to enroll in this cross-sectional study. Data were collected by postal mail survey. The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core (QLQ-C30) and the NMIBC-specific module were included in the survey to measure QoL. Descriptive statistics, t-tests, anova, and Pearson's correlation were used to describe demographics and to assess how QoL varied by sex, cancer stage, time since diagnosis, and treatment. RESULTS: A total of 398 survivors returned questionnaires (response rate: 23.6%). The mean QoL score for QLQ-C30 (range 0-100, higher = better QoL in all domains but symptoms) for global health status was 73.6, function domain scores ranged from 83.9 to 86.5, and scores for the top five symptoms (insomnia, fatigue, dyspnoea, pain, and financial difficulties) ranged from 14.1 to 24.3. The lowest NMIBC-specific QoL domain was sexual issues including sexual function, enjoyment, problems, and intimacy. Women had worse bowel problems, sexual function, and sexual enjoyment than men but better sexual intimacy and fewer concerns about contaminating their partner. Stage Ta had the highest global health status, followed by T1 and Tis. QoL did not vary by time since diagnosis except for sexual function. The cystectomy group (n = 21) had worse QoL in sexual function, discomfort with sexual intimacy, sexual enjoyment, and male sexual problems than the non-cystectomy group (n = 336). CONCLUSION: Survivors of NMIBC face a unique burden associated with their diagnosis and the often-lifelong surveillance and treatment regimens. The finding has important implications for the design of tailored supportive care interventions to improve QoL for NMIBC survivors.
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Qualidade de Vida , Neoplasias da Bexiga Urinária , Adulto , Idoso , Idoso de 80 Anos ou mais , Sobreviventes de Câncer , Estudos Transversais , Autoavaliação Diagnóstica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Invasividade Neoplásica , North Carolina , Estudos Prospectivos , Neoplasias da Bexiga Urinária/patologia , Neoplasias da Bexiga Urinária/terapiaRESUMO
PURPOSE: Patients with relapsed and/or refractory multiple myeloma (RRMM) are living longer due in part to changing treatment patterns. It is important to understand how changing treatment patterns affect patients' lives beyond extending survival. Research suggests that direct patient report is the best way to capture information on how patients feel and function in response to their disease and its treatment. Therefore, the purpose of this review is to summarize evidence of patients' experience collected through patient-reported outcomes (PRO) in RRMM patients, and to explore PRO reporting quality. METHODS: We conducted a systematic search to identify manuscripts reporting PROs in RRMM and summarized available evidence. We assessed PRO reporting quality using the Consolidated Standards of Reporting Trials (CONSORT) PRO Extension checklist. RESULTS: Our search resulted in 30 manuscripts. Thirteen unique PRO measures were used to assess 18 distinct PRO domains. Pain, fatigue, and emotional function were commonly assessed domains though reporting formats limited our ability to understand prevalence and severity of PRO challenges in RRMM. Evaluation of PRO reporting quality revealed significant reporting deficiencies. Several reporting criteria were included in less than 25% of manuscripts. CONCLUSIONS: Existing evidence provides a limited window for understanding the patient experience of RRMM and is further limited by suboptimal reporting quality. Observational studies are needed to describe prevalence, severity and patterns of PROs in RRMM overtime. Future studies that incorporate PROs would benefit from following existing guidelines to ensure that study evidence and conclusions can be fully assessed by readers, clinicians and policy makers.
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Mieloma Múltiplo/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Humanos , Pessoa de Meia-IdadeRESUMO
PURPOSE: The aims of this study were to examine quality of life, using the Impact of Cancer version 2 (IOCv2), in British non-Hodgkin lymphoma (NHL) survivors and investigate differences between survivors in the UK and the USA. METHODS: NHL survivors (326 UK and 667 US) completed the 37-item IOCv2 and psychological distress, fatigue and social support questionnaires. RESULTS: The IOCv2 showed good reliability in the British sample with higher internal consistency (Cronbach alpha 0.7-0.9) and no floor and ceiling effects. UK survivors showed significantly higher negative (p < 0.001) and higher positive (p = 0.003) IOC compared to US survivors. Younger survivors (p = 0.003), those with shorter time since diagnosis (p < 0.001) and with lower levels of social support (p = 0.001), showed more negative IOC in both groups. Higher negative IOC was also significantly associated with fatigue (p < 0.001) and depressive symptoms (p < 0.001) in both countries. Higher positive IOC was associated with female gender (p < 0.001), longer time since diagnosis (p = 0.02), those diagnosed at later stage (p < 0.05) and with greater social support (p = 0.004). Whereas significantly lower positive IOC was associated with white ethnicity (p < 0.001), higher education levels (p < 0.05) and fatigue (p = 0.001). CONCLUSIONS: The IOCv2 is reliable and applicable in UK and US populations. Both negative and positive IOC scores were higher in British compared to US survivors. However, in both countries, psychosocial factors consistently showed the greatest impact on QOL irrespective of clinical characteristics. Recognition and treatment of individuals with these risk factors is a high priority for improving QOL in long-term cancer survivors, as is the development of modular interventions aimed at increasing positive IOC as well as decreasing negative impact. The IOCv2 shows great potential both as a screening and assessment measure for examining cancer-related outcomes among survivors.
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Linfoma não Hodgkin/mortalidade , Linfoma não Hodgkin/psicologia , Sobreviventes/psicologia , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Fatores de Risco , Apoio Social , Inquéritos e Questionários , Reino Unido/epidemiologia , Estados Unidos/epidemiologiaRESUMO
INTRODUCTION: Sickle cell disease (SCD) is a complex illness with many social-behavioral co-morbidities. The aim of this project was to describe unmet social-behavioral health needs for adults with SCD who presented to the emergency department for treatment of vaso-occlusive episodes (VOEs). METHODS: A descriptive study using 1:1 interviews during an ED visit for a VOE was conducted; a brief social behavioral health screening interview guide was used. A convenience sample of adults with SCD treated in the emergency department for a VOE were eligible for inclusion. RESULTS: We conducted 147 interviews over 14 months. Patients reported transportation and/or scheduling difficulties with clinic appointments in one third of the interviews. Four major themes emerged: clinic appointment barriers, medication barriers, other care barriers, and social-behavioral issues. A majority of patients (53%) reported being brought to the emergency department by a family member at their current visit. Patients cited having insurance coverage issues in more than one quarter (27%) of the interviews. Difficulties in obtaining prescriptions were cited as a result of a financial copay (17%), transportation (11%), and pharmacy (9%) issues. Almost one third of patients (29%) reported feeling depressed, and 20% reported feeling anxious. DISCUSSION: Many patients with SCD who are treated in the emergency department have social or behavioral health risk factors. Emergency departments have an opportunity to screen and refer patients for follow-up. Future research should investigate referral outcomes and their effect on ED and hospital use.
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Anemia Falciforme/enfermagem , Anemia Falciforme/psicologia , Enfermagem em Emergência/métodos , Serviço Hospitalar de Emergência , Estudos Transversais , Humanos , Estudos Prospectivos , Fatores de Risco , Inquéritos e QuestionáriosRESUMO
Differences in quality of life (QOL) of long-term survivors of aggressive or indolent subtypes of non-Hodgkin lymphoma (NHL) have not been frequently evaluated. We assessed these differences by analyzing results of a large QOL survey of long-term NHL survivors. We hypothesized that the incurable nature of indolent NHL would relate to worse QOL in long-term survivors while the potentially cured long-term survivors of aggressive lymphoma would have better QOL. We found that QOL was similar between the two groups. Results suggest that patients with indolent NHL are coping well with their disease, yet experience some overall feelings of life threat.
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Linfoma não Hodgkin/epidemiologia , Qualidade de Vida , Sobreviventes , Terapia Combinada , Estudos Transversais , Progressão da Doença , Feminino , Humanos , Linfoma não Hodgkin/diagnóstico , Linfoma não Hodgkin/terapia , Masculino , Estadiamento de Neoplasias , Avaliação de Resultados da Assistência ao Paciente , Vigilância da População , Fatores SocioeconômicosRESUMO
BACKGROUND: The objective of the current study was to determine whether survivors of non-Hodgkin lymphoma are meeting select American Cancer Society (ACS) health-related guidelines for cancer survivors, as well as to examine relationships between these lifestyle factors and health-related quality of life (HRQoL) and posttraumatic stress (PTS). METHODS: A cross-sectional sample of 566 survivors of NHL was identified from the tumor registries of 2 large academic medical centers. Respondents were surveyed regarding physical activity, fruit and vegetable intake, body weight, tobacco use, HRQoL using the Medical Outcomes Study Short Form-36, and PTS using the Posttraumatic Stress Disorder CheckList-Civilian form. Lifestyle cluster scores were generated based on whether individuals met health guidelines and multiple linear regression analysis was used to evaluate relationships between lifestyle behaviors and HRQoL scores and PTS scores. RESULTS: Approximately 11% of participants met all 4 ACS health recommendations. Meeting all 4 healthy recommendations was related to better physical and mental QoL (standardized regression coefficient [ß], .57 [P<.0001] and ß, .47 [P = .002]) and to lower PTS scores (ß, -0.41; P = .01). CONCLUSIONS: Survivors of NHL who met more ACS health-related guidelines appeared to have better HRQoL and less PTS. Unfortunately, many survivors are not meeting these guidelines, which could impact their overall well-being and longevity.
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Estilo de Vida , Linfoma não Hodgkin/mortalidade , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Linfoma não Hodgkin/psicologia , Masculino , Pessoa de Meia-Idade , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Transtornos de Estresse Pós-Traumáticos/etiologia , Inquéritos e Questionários , SobreviventesRESUMO
OBJECTIVE: Pillars4Life is an educational program that teaches coping skills to cancer patients in a virtual group setting; it was recently implemented at 17 hospitals across the USA. The cost-effective, scalable, and assessable Pillars4Life curriculum targets psychosocial resources (e.g., self-efficacy and coping skills) as a means to reduce symptoms (e.g., depression, anxiety, and posttraumatic stress) and enhance quality of life. METHODS: Cancer patients were recruited from hospitals that received the LIVESTRONG Community Impact Project Award to enroll in a pilot study of Pillars4Life. Consenting participants met with a certified instructor weekly for 10 weeks in a virtual environment; the manualized intervention trained participants in personal coping skills. Longitudinal assessments over 6 months were assessed using validated instruments to determine changes in Pillars4Life targeted resources and outcomes. Multiple linear regression models examined the relationship between changes in targeted resources and changes in outcome from baseline to 3 months post-intervention. RESULTS: Participants (n = 130) had the following characteristics: mean age of 56 ± 11 years, 87% women, 11% non-Caucasian, and 77% with college degree. At 3- and 6-month follow-up, mean scores improved on all key outcome measures such as depression (Patient Health Questionnaire), anxiety (Generalized Anxiety Disorder), posttraumatic stress (Posttraumatic Stress Disorder Checklist), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), and well-being (Functional Assessment of Cancer Therapy-General) from baseline (all p < 0.01); results were most pronounced among participants who reported ≥4/10 on the Distress Thermometer at baseline (all p < 0.001). Changes in each targeted resource were associated with 3-month improvements in at least one outcome. CONCLUSIONS: Participation in the Pillars4Life program was associated with statistically and clinically significant improvements in scores on pre-specified outcomes and targeted resources.
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Adaptação Psicológica , Neoplasias/psicologia , Sobreviventes/psicologia , Interface Usuário-Computador , Idoso , Ansiedade/prevenção & controle , Depressão/prevenção & controle , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Projetos Piloto , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida , Autoeficácia , Transtornos de Estresse Pós-Traumáticos/prevenção & controle , Sobreviventes/estatística & dados numéricosRESUMO
Adaptation is an ongoing, cognitive process with continuous appraisal of the cancer experience by the survivor. This exploratory study tested a path model examining the personal (demographic, disease, and psychosocial) characteristics associated with quality of life (QOL) and whether or not adaptation to living with cancer may mediate these effects. This study employed path analysis to estimate adaptation to cancer. A cross-sectional sample of NHL survivors (N = 750) was used to test the model. Eligible participants were ≥ 18 years, at least 2 years post-diagnosis, and living with or without active disease. Sixty-eight percent of the variance was accounted for in QOL. The strongest effect (-0.596) was direct by negative adaptation, approximately 3 times that of positive adaptation (0.193). The strongest demographic total effects on QOL were age and social support; <65 years of age had better QOL and better adaptation compared to those ≥ 65. Of the disease characteristics, comorbidity score had the strongest direct effect on QOL; each additional comorbidity was associated with a 0.309 standard deviation decline on QOL. There were no fully mediated effects through positive adaptation alone. Our exploratory findings support the coexistence of positive and negative adaptations perception as mediators of personal characteristics of the cancer experience. Negative adaptation can affect QOL in a positive way. Cancer survivorship is simultaneously shaped by both positive and negative adaptation with future research and implications for practice aimed at improving QOL.
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Adaptação Psicológica , Linfoma não Hodgkin/psicologia , Modelos Psicológicos , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Linfoma não Hodgkin/terapia , Masculino , Pessoa de Meia-Idade , Sobreviventes/estatística & dados numéricosRESUMO
OBJECTIVE: There are conflicting empirical data regarding the relationship between posttraumatic stress (PTS) and growth (PTG) observed in cancer survivors. Clarification of this association could inform evidence-based therapeutic recommendations to promote adjustment in survivors following a cancer diagnosis. METHODS: This cross-sectional study employed standardized measures to examine the association between PTS and PTG in a sample of long-term lymphoma survivors. In addition, associations between PTG and demographic, clinical and psychosocial variables were identified to inform clinical recommendations. RESULTS: Long-term survivors of non-Hodgkin lymphoma provided informed consent (n = 886; 74% response rate). Subjects averaged 10.2 years post-diagnosis and 62.9 years of age. No significant association was found between the PTS and PTG summary scores. Several demographic and clinical variables (e.g., female gender and greater social support) were independently associated with greater PTG. CONCLUSIONS: Clinicians are advised to be attentive to psychosocial needs throughout the post-cancer diagnosis adjustment period by screening for PTS symptomatology and recognizing that survivors who report growth may also be highly distressed.
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Adaptação Psicológica , Linfoma não Hodgkin/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Sobreviventes/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Inquéritos Epidemiológicos , Humanos , Relações Interpessoais , Acontecimentos que Mudam a Vida , Linfoma não Hodgkin/diagnóstico , Masculino , Pessoa de Meia-Idade , Apoio Social , Fatores Socioeconômicos , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Inquéritos e Questionários , Fatores de Tempo , Adulto JovemRESUMO
OBJECTIVE: Management of patient distress is a critical task in cancer nursing and cancer practice. Here we describe two examples of how an electronic patient-reported outcome (ePRO) measurement system implemented into routine oncology care can practically aid clinical and research tasks related to distress management. METHODS: Tablet personal computers were used to routinely complete a standardized ePRO review of systems surveys at point of care during every encounter in the Duke Oncology outpatient clinics. Two cases of use implementation are explored: (1) triaging distressed patients for optimal care, and (2) psychosocial program evaluation research. RESULTS: Between 2009 and 2011, the ePRO system was used to collect information during 17,338 Duke Oncology patient encounters. The system was used to monitor patients for psychosocial distress employing an electronic clinical decision support algorithm, with 1,952 (11.3%) referrals generated for supportive services. The system was utilized to examine the efficacy of a psychosocial care intervention documenting statistically significant improvements in distress, despair, fatigue, and quality of life (QOL) in 50 breast cancer patients. SIGNIFICANCE OF RESULTS: ePRO solutions can guide best practice management of cancer patient distress. Nurses play a key role in implementation and utilization.
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Transtornos de Ansiedade/enfermagem , Transtornos de Ansiedade/psicologia , Transtorno Depressivo/enfermagem , Transtorno Depressivo/psicologia , Registros Eletrônicos de Saúde , Programas de Rastreamento/enfermagem , Neoplasias/enfermagem , Neoplasias/psicologia , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricos , Satisfação do Paciente , Melhoria de Qualidade/organização & administração , Papel do Doente , Adaptação Psicológica , Transtornos de Ansiedade/diagnóstico , Comportamento Cooperativo , Estudos Transversais , Transtorno Depressivo/diagnóstico , Humanos , Comunicação Interdisciplinar , Neoplasias/diagnóstico , Neoplasias/patologia , Avaliação em Enfermagem/organização & administração , Software , Triagem/organização & administraçãoRESUMO
PURPOSE: To understand cultural differences in the impact of cancer (IOC) by (i) performing an independent psychometric evaluation of the Dutch version of the Impact of Cancer Scale version 2 (IOCv2) in a non-Hodgkin lymphoma (NHL) sample and (ii) examining differences between Dutch and American NHL survivors in perceived IOC and identifying associations with socio-demographic and clinical characteristics. METHODS: Data collected from 491 Dutch and 738 American NHL survivors were used in this study. IOCv2 responses were obtained from all survivors; the Dutch survivors also completed the European Organization for Research and Treatment of Cancer Quality of Life Core questionnaire, which measures quality of life. RESULTS: Exploratory factor analysis of the Dutch version yielded a factor solution similar to the American structure but with some subscales merging into single factors. Internal consistency was good; Cronbach's alpha was 0.88 for the Positive and 0.94 for the Negative summary scales. Large differences were observed between survivors, whereby Dutch survivors reported fewer Positive (Δ -0.4, p < 0.001, effect size: 0.27) and more Negative (Δ 0.2, p ≤ 0.001, effect size: 0.13) impacts of cancer independent of socio-demographic and clinical characteristics. CONCLUSION: Similar impact domains of the IOCv2 were observed in the Dutch sample, providing evidence that IOCv2 scales measure common and important survivor concerns across two different Western nations. Higher positive impacts for US survivors might be explained by more personal control and availability of supportive services. Future research should focus on determinants of the IOC in both Dutch and American survivors to gain better understanding of the factors that might improve it and suggest how health care may be modified toward that end.