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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., (© 2024 American Cancer Society.)

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., (© 2024 John Wiley & Sons Ltd.)

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., (© 2024. The Author(s).)

This paper demonstrates the essential nature of oncology social work and the critical role that oncology social workers (OSWs) play in the achievement of high-quality cancer care that improves patient outcomes, contains cost, advances population health, reduces provider burn-out among healthcare providers, and does it in a manner that addresses disparities and achieves equity. To this end, this paper's purpose is two-fold: (1) to review and demonstrate OSW contributions to the advancement of comprehensive cancer care over the last 15 years, and (2) to consider next steps for the Association of Oncology Social Work (AOSW) and the Oncology Social Work profession to achieve its mission and calling. To enhance the viability and security of OSWs and the professional organizations that support them, this report summarizes a breadth and depth of work and includes recommendations for the profession.

Background: Patients with blood cancer experience serious physical and emotional symptoms throughout their cancer journey., Objective: Building on previous work, we aimed to develop an app designed to help patients with multiple myeloma and chronic lymphocytic leukemia self-manage symptoms and test it for acceptability and preliminary efficacy., Methods: We developed our Blood Cancer Coach app with input from clinicians and patients. Our 2-armed randomized controlled pilot trial recruited participants from Duke Health and nationally in partnerships with the Association of Oncology Social Work, Leukemia and Lymphoma Society, and other patient groups. Participants were randomized to the attention control (Springboard Beyond Cancer website) arm or the Blood Cancer Coach app intervention arm. The fully automated Blood Cancer Coach app included symptom and distress tracking with tailored feedback, medication reminders and adherence tracking, multiple myeloma and chronic lymphocytic leukemia education resources, and mindfulness activities. Patient-reported data were collected at baseline, 4 weeks, and 8 weeks for both arms through the Blood Cancer Coach app. Outcomes of interest were global health (Patient Reported Outcomes Measurement Information System Global Health), posttraumatic stress (Posttraumatic Stress Disorder Checklist for DSM-5), and cancer symptoms (Edmonton Symptom Assessment System Revised). Among participants in the intervention arm, satisfaction surveys and usage data were used to evaluate acceptability., Results: Among 180 patients who downloaded the app, 49% (89) of them consented to participate and 40% (72) of them completed baseline surveys. Of those who completed baseline surveys, 53% (38) of them completed week 4 surveys (16 intervention and 22 control) and 39% (28) of them completed week 8 surveys (13 intervention and 15 control). Most participants found the app at least moderately effective at helping manage symptoms (87%), feeling more comfortable seeking help (87%), increasing awareness of resources (73%), and reported being satisfied with the app overall (73%). Participants completed an average of 248.5 app tasks over the 8-week study period. The most used functions within the app were medication log, distress tracking, guided meditations, and symptom tracking. There were no significant differences between the control and intervention arms at week 4 or 8 on any outcomes. We also saw no significant improvement over time within the intervention arm., Conclusions: The results of our feasibility pilot were promising in which most participants found the app to be helpful in managing their symptoms, reported satisfaction with the app, and that it was helpful in several important areas. We did not, however, find significantly reduced symptoms or improved global mental and physical health over 2 months. Recruitment and retention were challenging for this app-based study, an experience echoed by others. Limitations included a predominantly White and college educated sample. Future studies would do well to include self-efficacy outcomes, target those with more symptoms, and emphasize diversity in recruitment and retention., Trial Registration: ClinicalTrials.gov NCT05928156; https://clinicaltrials.gov/study/NCT05928156., (©Matthew R LeBlanc, Thomas W LeBlanc, Qing Yang, Jennifer McLaughlin, Kerry Irish, Sophia K Smith. Originally published in JMIR Cancer (https://cancer.jmir.org), 06.07.2023.)

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.

Allogeneic hematopoietic stem cell transplantation (HCT) is a potentially curative treatment for both malignant and nonmalignant hematologic diseases; however, reported rates of treatment-related mortality approach 30%. Outcomes are worse in patients who begin HCT with functional impairments. To detect such impairments, a geriatric assessment (GA) is recommended in adults age ≥65 years. Younger HCT candidates also may be impaired because of chemotherapy regimens pre-HCT. Therefore, we hypothesized that GA can be beneficial for adult patients of all ages and subsequently created a clinical pretransplantation optimization program to assess all HCT candidates using a modified GA. One-hundred fifty-seven patients were evaluated in 4 functional domains- physical, cognitive, nutritional, and psychological-at 2 time points prior to HCT-new patient evaluation (NPE) and sign-off (SO)-between October 2017 and January 2020. At NPE, 80.9% of the patients had at least 1 domain with a functional impairment, and physical (P = .006), cognitive (P = .04), and psychological (P = .04) impairments were associated with an increased likelihood of not proceeding to HCT. In addition, patients age 18 to 39 years were more likely than older patients to have a physical function impairment (P = .001). Between NPE and SO, 51.9% of the patients had resolution of 1 or more impairments, and nutritional impairment at SO was predictive of worse overall survival (P = .01). Our study shows that GA can identify functional impairments in patients of all ages. Early identification of impairments could facilitate referrals to supportive care and resolution of impairments prior to HCT, suggesting that GA could be recommended for HCT candidates of all ages., (Copyright © 2022 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

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., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

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., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

This study describes the prevalence and persistence of fatigue among a cohort of long-term non-Hodgkin lymphoma (NHL) survivors. Mailed surveys assessed quality-of-life including fatigue (SF-36) at baseline and five years. Logistic regression was used to identify factors associated with prevalence of fatigue at baseline and persistence of fatigue across timepoints. More than one-quarter (27.7%) of the 555 NHL survivors reported clinically meaningful fatigue at baseline and 18.7% reported persistent fatigue at five years. One-third (34.4%) reported clinically meaningful worsening of fatigue over time. Independent associations with persistent fatigue included female gender, less education, past chemotherapy, increased comorbidities, and posttraumatic stress symptoms ( P <.05). Our findings suggest that one in three NHL survivors experience clinically meaningful fatigue long after their diagnosis and initial treatment. Furthermore, we found that fatigue worsens or persists for many, highlighting the need for vigilance in assessing and treating fatigue in this population.

Background/aims: Many cancer survivors who received intensive treatment such as hematopoietic stem cell transplantation (HCT) experience posttraumatic stress disorder (PTSD) symptoms. PTSD is associated with lower quality of life and other symptoms that require clinical treatment. The iterative treatment decisions that happen in clinical practice are not adequately represented in traditional randomized controlled trials (RCT) of PTSD treatments. The proposed stepped-care SMART design allows for evaluation of initial response to the Cancer Distress Coach mobile app; adaptive stepped-care interventions; and precision treatment strategies that tailor treatment selection to patient characteristics., Methods/design: HCT survivors (N = 400) reporting PTSD symptoms are being recruited at two cancer centers and randomly assigned to: 1) Cancer Distress Coach app or 2) Usual Care. The app includes educational and cognitive behavioral therapy (CBT)-based activities. Four weeks post-randomization, participants re-rate their PTSD symptoms and, based on intervention response, non-responders are re-randomized to receive video-conferenced sessions with a therapist: 3) coaching sessions in using the mobile app; or 4) CBT specific to HCT survivors. Participants complete outcome measures of PTSD, depression, and anxiety after Months 1, 3, and 6. Participant characteristics moderating intervention responses will be examined., Conclusions: This novel adaptive trial design will afford evidence that furthers knowledge about optimizing PTSD interventions for HCT survivors. To our knowledge, this study is the first SMART design evaluating PTSD symptom management in cancer survivors. If successful, it could be used to optimize treatment among a range of cancer and other trauma survivors., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Objectives: To characterize clinician experiences of hospice access and scope of services for undocumented immigrants. Background: The 10.5 million undocumented immigrants in the United States are not covered by Medicare's hospice benefit and are at high risk for being uninsured. Limited data are available regarding hospice services for this population. Setting/Subjects: Two hundred ninety-four interdisciplinary palliative care clinicians from across the United States. Measurements: Participants completed a web-based survey regarding hospice access and scope of services for undocumented immigrants in their location. We used simple frequencies to report clinician responses and chi-square analysis to evaluate associations between response and location. We performed rapid qualitative analysis of free-text responses to identify common limitations in scope of services. Results: A majority of clinicians (68%) perceived that access to hospice was limited or unavailable for undocumented immigrants in their location, and among respondents who provided data regarding hospice scope, 38% reported that services provided to undocumented immigrants were limited compared to those provided to other patients. Reports of restricted access and scope varied by region, and those in large metropolitan areas were more likely to report restricted scope of care than those in smaller towns (43% vs. 28%; p  = 0.03). In our qualitative analysis of free-text responses, common limitations in hospice scope included reduced access to medications and equipment, inability to access inpatient hospice, inadequate translation services, reduced staffing, and restricted duration of services. Conclusions: Undocumented immigrants may face barriers in accessing comprehensive hospice services. Public policy changes that improve access to hospice may improve end-of-life care for undocumented immigrants.

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., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: This cross-sectional study examined the prevalence of post-traumatic stress disorder (PTSD) and identified the predictive factors associated with PTSD symptoms in a population of non-muscle-invasive bladder cancer (NMIBC) survivors., Methods: A random sample of 2,000 NMIBC survivors, identified through the North Carolina Central Cancer Registry, were sent postal mail survey. PTSD symptoms were measured using the PTSD Checklist for DSM-5 (PCL-5). Descriptive statistics and hierarchical multiple linear regression were used to examine the prevalence of PTSD and to identify the factors associated with PTSD., Results: A total of 376 participants were included in the analysis. The average PCL-5 score was 7.1 (standard deviation [SD] = 10.9, range: 0-66), where higher scores represent higher levels of PTSD symptoms. The prevalence of the provisional PTSD diagnosis was 5.3% or 6.9% (after adjusting for nonresponse). In addition, 28.7% of participants met criteria for at least one PTSD symptom cluster. After controlling for other variables, participants who were younger, had active disease or unsure of status, had more comorbidities, had lower social support, and had higher cognitive concerns reported significantly higher PTSD symptoms., Conclusion: More than one-fourth of NMIBC survivors had PTSD symptoms. Thus, healthcare providers should assess PTSD symptoms and provide supportive care for NMIBC survivors in the survivorship phase of care., Competing Interests: Conflict of Interest Dr. Nielsen reports grant funding from the National Institutes of Health and the US Department of Defense and work as a consultant for the American Urological Association, all not directly related to the work described in this manuscript. The other authors have no conflicts of interest to disclose., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Purpose: To explore the ways in which multiple myeloma affects an individual's life in the modern treatment era., Participants & Setting: 15 individuals with multiple myeloma and 10 clinicians were recruited from two academic medical centers in the southeastern United States., Methodologic Approach: Semistructured interviews were conducted with individuals with multiple myeloma and clinicians to explore the effect of a multiple myeloma diagnosis and treatment on individuals' lives. Transcribed interviews were analyzed using conventional content analysis., Findings: The following four themes emerged from the analysis., Implications for Nursing: The treatment journey for those with multiple myeloma can be lifelong and may require frequent visits to an oncologist and, potentially, many successive lines of therapy. Life effects are far-reaching and long-term. Nurses should be aware of the interprofessional resources to help meet these individuals' needs. With thorough assessment, care planning, and education, nurses can play a key role in mitigating the negative effects of multiple myeloma and its treatment.

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.

Background: Anticipating and making health care decisions about appropriate or preferred treatment around end-of-life care are intellectually challenging and emotionally distressing for metastatic breast cancer (MBC) patients, new interventions are needed. Objective: This study examined the effect of Four Conversations , an online and personalized coping and decision aid curriculum, on the completion of advance care directives and shared decision making among patients and their loved ones, clinicians, and spirit. Design: Participants were randomized 1:1 to Four Conversations or wait-listed usual care conditions. Setting: Adult breast cancer survivors with metastatic disease were recruited nationally. Measurements: Electronic surveys collected self-reported demographic, clinical, and outcome data at baseline and four weeks postintervention. Results: Participants ( N  = 252) were mean age 53.6 ± 11.0 years; 100% female; 88% Caucasian; 67% married; and 33% employed. Over half (54%) of treatment arm participants without an advance directive completed one by study end, most (62%) felt that Four Conversations helped them quite a bit or a great deal in making a better decision, and 90% would recommend to others. Difference in the change in decisional conflict scores for treatment and control conditions was not significant ( p  = 0.07). Conclusions: These results suggest that Four Conversations facilitated the completion of advance care directives. Given that reductions in decisional conflict scores between the treatment and control arms were not significant, we cannot conclude that program use was associated with improved decisional conflict among MBC survivors. Online programs can be a feasible and effective alternative to in-person support.

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., (© 2019 The Authors BJU International © 2019 BJU International Published by John Wiley & Sons Ltd.)

Background: Non-muscle-invasive bladder cancer (NMIBC) represents approximately 75% of newly diagnosed patients with bladder cancer. Non-muscle-invasive bladder cancer survivors have unique chronic burdens including frequent recurrences, repeated surveillance cystoscopies and treatments, and the highest lifetime medical cost per person among all cancers., Objective: The purpose of this study was to summarize studies assessing quality of life (QOL) in NMIBC survivors., Methods: The literature from January 2005 to March 2017 found in PubMed, CINAHL, and PsycINFO databases was reviewed systematically. Inclusion criteria were as follows: (1) research about NMIBC survivors, (2) outcomes included QOL, (3) original research article published in peer-reviewed journals, and (4) published in English., Results: A total of 15 studies were included: 14 quantitative studies and 1 mixed-methods study. Non-muscle-invasive bladder cancer survivors had significantly lower QOL compared with the general population, especially in fatigue, physical and role functioning, and mental health. Repeated transurethral resections and intravesical treatments were associated with impaired physical function and mental health. Most NMIBC survivors had concerns of urinary and bowel problems and sexual function., Conclusion: Despite a good prognosis, NMIBC and its treatment have a significant impact on QOL in survivors. The findings showed large burdens in NMIBC survivors and suggest that further research is needed to better understand potential opportunities to improve QOL in this population., Implications for Practice: Oncology nurses are in the critical position for assessing symptoms and concerns. Oncology nurses should pay special attention to NMIBC survivors who have unique symptoms and burden with the aim of improving survivors' QOL.

The field of psychosocial oncology is a young discipline with a rapidly expanding evidence base. Over the past few decades, several lines of research have established that psychosocial problems, such as anxiety, depression, post-traumatic stress, fatigue, sexual dysfunction, and cognitive complaints, are common and consequential in patients with cancer. The word "distress" was chosen deliberately to capture a broad concept; consequently, distress screening is meant to function as an initial step in the more targeted evaluation of the source(s) of the patient's distress. In 2015, the American College of Surgeons' Commission on Cancer mandated psychosocial distress screening as part of their accreditation process. Similar screening requirements are in place internationally, including in Canada, where screening for distress is endorsed as the sixth vital sign and a standard of care that must be met by any Canadian health care organization providing cancer services that seeks to be accredited. Over the past few years, cancer centers around the world have been exploring optimum ways to implement and evaluate distress screening initiatives. This paper presents three approaches to distress screening implementation: (1) a model that incorporates the importance of shared values, perceived benefits, and relevant outcomes in the implementation of distress management protocols; (2) a Canadian knowledge translation application to distress screening, including triage considerations and interventions; and (3) a novel approach to distress management via the use of a mobile application to manage post-traumatic stress symptoms. In closing, future opportunities and challenges associated with the emergence of technology will be discussed.

Background: A community hospital combined its medical and surgical patients with cancer on one unit, which resulted in nurses not trained in oncology caring for this patient population., Objectives: The Oncology Intensives Initiative (ONCii) involved the (a) design and implementation of a daylong didactic boot camp class and a four-hour simulation session and (b) the examination of nurses' worries, attitudes, self-efficacy, and perception of interdisciplinary teamwork., Methods: A two-group, pre-/post-test design was implemented. Group 1 consisted of nurses who attended the didactic boot camp classes alone, whereas group 2 was comprised of nurses who attended the didactic boot camp classes and the simulation sessions., Findings: Results of data analysis showed a decrease in worries and an increase in positive attitudes toward chemotherapy administration in both groups, as well as an increase in self-efficacy among members of group 2.

Objective: To identify the elements necessary for successful collaboration between patient groups and academic and industry sponsors of clinical trials, in order to develop recommendations for best practices for effective patient group engagement., Methods: In-depth interviews, informed by a previously reported survey, were conducted to identify the fundamentals of successful patient group engagement. Thirty-two respondents from 3 sectors participated: patient groups, academic researchers, and industry. The findings were presented to a multistakeholder group of experts in January 2015. The expert group came to consensus on a set of actionable recommendations for best practices for patient groups and research sponsors., Results: Interview respondents acknowledged that not all patient groups are created equal in terms of what they can contribute to a clinical trial. The most important elements for effective patient group engagement include establishing meaningful partnerships, demonstrating mutual benefits, and collaborating as partners from the planning stage forward. Although there is a growing appreciation by sponsors about the benefits of patient group engagement, there remains some resistance and some uncertainty about how best to engage. Barriers include mismatched expectations and a perception that patient groups lack scientific sophistication and that "wishful thinking" may cloud their recommendations., Conclusions: Patient groups are developing diverse skillsets and acquiring assets to leverage in order to become collaborators with industry and academia on clinical trials. Growing numbers of research sponsors across the clinical trials enterprise are recognizing the benefits of continuous and meaningful patient group engagement, but there are still mindsets to change, and stakeholders need further guidance on operationalizing a new model of clinical trial conduct.

Introduction: Although there are over 500 mobile health (mHealth) applications (apps) available for download in the field of oncology, little research has addressed their acceptability among health care providers. In addition, the providers' perspectives regarding patient app use has been largely unexamined. We conducted a qualitative study to explore opportunities and barriers for mHealth app use for oncology care., Methods: We developed a structured interview guide focusing on acceptability, appropriateness, feasibility, and sustainability of the use of apps in cancer care. We interviewed 15 oncology providers about their attitudes and preferences. De-identified audio recordings were transcribed and coded for emerging themes., Results: Providers interviewed included physicians (n = 8) and advanced practice (n = 3) and supportive services (n = 4) providers who care for a wide range of cancer types; ages ranged from 32 to 68 years. Interviews lasted approximately 30 minutes. Oncology providers reported limited exposure to mHealth apps in patient care, but were generally open to recommending or prescribing apps in the future. Key themes included opportunities for mobile app use (including general health promotion, tracking symptoms, and engaging patients) and barriers to implementation (including access to technology, responsibility, workflow, and the source of the app itself)., Conclusion: Our results show openness among oncology providers to using mHealth technology as part of patient care, but concerns regarding implementation. Designing acceptable apps may be challenging and require involvement of key stakeholders, partnering with trustworthy institutions, and outcome-based research.

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., (Copyright © 2017 Emergency Nurses Association. Published by Elsevier Inc. All rights reserved.)

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., Competing Interests: The authors declare that they have no conflicts of interest.

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., Competing Interests: DECLARATION of INTEREST STATEMENT The authors report no declarations of interest.

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., (Copyright © 2015 John Wiley & Sons, Ltd.)

Objective: Patient-centered clinical trial design and execution is becoming increasingly important. No best practice guidelines exist despite a key stakeholder declaration to create more effective engagement models. This study aims to gain a better understanding of attitudes and practices for engaging patient groups so that actionable recommendations may be developed., Methods: Individuals from industry, academic institutions, and patient groups were identified through Clinical Trials Transformation Initiative and Drug Information Association rosters and mailing lists. Objectives, practices, and perceived barriers related to engaging patient groups in the planning, conduct, and interpretation of clinical trials were reported in an online survey. Descriptive and inferential statistical analysis of survey data followed a literature review to inform survey questions., Results: Survey respondents (n = 179) valued the importance of involving patient groups in research; however, patient group respondents valued their contributions to research protocol development, funding acquisition, and interpretation of study results more highly than those contributions were valued by industry and academic respondents (all p < .001). Patient group respondents placed higher value in open communications, clear expectations, and detailed contract execution than did non-patient group respondents (all p < .05). Industry and academic respondents more often cited internal bureaucratic processes and reluctance to share information as engagement barriers than did patient group respondents (all p < .01). Patient groups reported that a lack of transparency and understanding of the benefits of collaboration on the part of industry and academia were greater barriers than did non-patient group respondents (all p< .01)., Conclusions: Despite reported similarities among approaches to engagement by the three stakeholder groups, key differences exist in perceived barriers and benefits to partnering with patient groups among the sectors studied. This recognition could inform the development of best practices for patient-centered clinical trial design and execution. Additional research is needed to define and optimize key success factors.

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 [β], .57 [P<.0001] and β, .47 [P = .002]) and to lower PTS scores (β, -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., (© 2015 American Cancer Society.)

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.

Purpose: Cancer treatment-related out-of-pocket costs create substantial financial distress for many patients. However, little work has been done to describe available financial resources and barriers to connecting those resources to patients., Methods: This was a single-center, qualitative study that used semistructured interviews and focus groups with social workers and financial care counselors. Interview guides were used to elicit feedback from study participants pertaining to the types of financial problems that their patients were experiencing, the process for addressing these issues, patient assistance resources, and access barriers., Results: Four interviews and two focus group sessions (n = 15) were conducted in which four themes emerged among the social work and financial care counselor samples. Participants cited (1) frustration over the lack of financial resources and increasingly stringent eligibility criteria, (2) barriers to providing assistance such as process inefficiencies, (3) limited resources to identify at- risk patients and refer them for services, and (4) inadequate insurance coverage and availability. To bridge the gap between increasing patient need and limited resources, participants suggested development of interventions designed to aid in patient screening and resource identification., Conclusions: Oncology social workers and financial care counselors reported inadequate financial resources and faced barriers to matching appropriate resources with patients in need. Limited social work resources hindered early screening for financial distress. Interventions that focus on screening for early identification of financial distress and identification of resources are needed., (Copyright © 2014 by American Society of Clinical Oncology.)

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., (Copyright © 2013 John Wiley & Sons, Ltd.)

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.

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., (Copyright © 2012 John Wiley & Sons, Ltd.)

Purpose/objectives: To examine demographic and disease characteristics by age and the moderating effect of age on quality of life (QOL) among non-Hodgkin lymphoma (NHL) survivors., Design: A cross-sectional, secondary analysis study of NHL survivors., Setting: Two North Carolina cancer registries., Sample: 741 NHL survivors with a mean age of 62 years and a mean time since diagnosis of 10 years., Methods: Mailed surveys were sent to individuals treated for NHL. All analyses were conducted using SPSS®, version 18.0. Multiple regression was used to analyze relationships among demographic and disease characteristics, age, and QOL., Main Research Variables: Demographic, disease, and clinical characteristics on QOL., Findings: In relation to QOL, income and gender were moderated by age; for example, younger survivors who earned less than $30,000 annually had a poorer QOL. Women reported a higher QOL than men., Conclusions: Age was a moderator for income and an indicator for how income could affect care of younger survivors. Men reported a lower QOL than women and gender-specific resources may be helpful to them., Implications for Nursing: Nursing research should focus on age-sensitive resources targeted for younger NHL survivors., Knowledge Translation: Age is an important characteristic that impacts overall health-related QOL. Oncology nurses are instrumental in identifying patients at all ages who could benefit from age-specific resources.

Purpose: Psychometric scales often change over time, complicating comparison of scores across different versions. The Impact of Cancer (IOC) scale was developed to measure quality of life of long-term cancer survivors. We sought to develop a method for scoring the earlier version, IOCv1, to obtain scores comparable to IOCv2, which is the recommended version., Methods: Data from 1,828 cancer survivors who had completed a questionnaire including all IOCv1 and IOCv2 items were randomly split into training, validation and test sets. The training and validation sets were used to develop and validate linear regression models for predicting each IOCv2 item missing from IOCv1. The models were then applied to the test set to obtain pseudo-IOCv2 scores, which were compared to observed scores to assess predictive performance of the models in independent data., Results: Observed and pseudo-IOCv2 scale scores were highly correlated in the test sample and had mean differences near zero. The models performed especially well in predicting summary scale scores, with correlations exceeding 0.98., Conclusions: The approach facilitates comparison across samples of survivors surveyed using different versions of the IOC and may be useful to other investigators trying to compare participants surveyed using different versions of the same instrument.

Purpose: Little is known about change in quality of life (QOL) among long-term cancer survivors. We examined change over time in QOL among long-term survivors of non-Hodgkin lymphoma and identified demographic, clinical, and psychosocial risk factors for poor outcomes., Methods: Surveys were mailed to 682 lymphoma survivors who participated in a study 5 years earlier, when on average they were 10.4 years postdiagnosis. Standardized measures of QOL, perceptions of the impact of cancer, symptoms, medical history, and demographic variables were reported at both time points and examined using linear regression modeling to identify predictors of QOL over time., Results: A total of 566 individuals participated (83% response rate) who were a mean of 15.3 years postdiagnosis; 52% were women, and 87% were white. One third of participants (32%) reported persistently high or improved QOL, yet a notable proportion (42%) reported persistently low or worsening QOL since the earlier survey. Participants who received only biologic systemic therapy reported improvement in physical health despite the passage of time. Older age, more comorbidity, and more or increasing negative and decreasing positive perceptions of cancer's impact were independent predictors of poor QOL. Lymphoma symptom burden, less social support, and having received a transplantation were related to negative perceptions of cancer's impact., Conclusion: Moderate to severe symptom burden, limited social support, or having received a transplantation should alert the clinician to potential need for supportive services. Perceptions of cancer's impact are associated with QOL cross-sectionally and longitudinally; modifying these perceptions may thus provide a strategy for improving QOL.

Purpose: Survivorship care plans (SCPs) are tools used to assist in the transition from treatment to surveillance cancer care. However, few studies have investigated survivor and provider preferences regarding SCPs. Our purpose was to explore survivor and primary care provider preferences regarding content, format, and delivery of SCPs., Methods: Focus groups and provider interviews were performed in 2010. Five different templates were presented to study participants for their feedback. Each SCP included a treatment summary, surveillance schedule, and care plan for the same fictitious patient. Sessions were transcribed, and field notes taken., Results: Four focus groups (n = 29 survivors) and five primary care providers participated. No cancer survivors had ever received a written SCP. We found clear preferences for the Journey Forward format (with some modifications) and face-to-face delivery (print or electronic) to the survivor by his or her oncologist just before or soon after completion of treatment. Primary care providers preferred an abbreviated version., Conclusion: Written SCPs were endorsed by all patients and primary care providers as helpful communication tools. However, if used alone, the SCP would be insufficient to ease the transition to follow-up care. Improved communication and care coordination were identified as important for survivorship care that went beyond what this document might provide.

Purpose: Little is known about the trajectory of post-traumatic stress disorder (PTSD) symptoms in cancer survivors, despite the fact that such knowledge can guide treatment. Therefore, this study examined changes in PTSD symptoms among long-term survivors of non-Hodgkin's lymphoma (NHL) and identified demographic, clinical, and psychosocial predictors and correlates of PTSD symptomatology., Patients and Methods: Surveys were mailed to 682 NHL survivors who participated in an earlier survey and now were at least 7 years postdiagnosis. Information was obtained regarding PTSD symptoms, positive and negative perceptions of the cancer experience (ie, impact of cancer), and other potential correlates of PTSD., Results: A total of 566 individuals participated (83% response rate) with a median of 12.9 years since diagnosis; respondents were 52% female and 87% white. Although half (51%) of the respondents reported no PTSD symptoms and 12% reported a resolution of symptoms, more than one-third (37%) reported persistence or worsening of symptoms over 5 years. Survivors who reported a low income, stage ≥ 2 at diagnosis, aggressive lymphoma, having received chemotherapy, and greater impact of cancer (both positive and negative) at the initial survey had more PTSD symptoms at follow-up. In multivariable analysis, income and negative impacts of cancer were independent predictors of PTSD symptoms., Conclusion: More than one-third of long-term NHL survivors experience persisting or worsening PTSD symptoms. Providers should be aware of enduring risk; early identification of those at prolonged risk with standardized measures and treatments that target perceptions of the cancer experience might improve long-term outcomes.

Objective: In a pilot study, participation in the Pathfinders program was associated with reductions in distress and despair and improvements in quality of life (QOL) among advanced breast cancer patients. This study explores the relationship between psychosocial resources invoked through the Pathfinders intervention and outcomes., Methods: Advanced breast cancer patients were enrolled in a prospective, single-arm, pilot study of the Pathfinders psychosocial program. Participants met at least monthly with a licensed clinical social worker who administered the Pathfinders intervention, which focused on strengthening adaptive coping skills, identifying inner strengths, and developing a self-care plan. Longitudinal assessments over 6 months used validated instruments to assess changes in Pathfinders targets (coping, social support, self-efficacy, spirituality, and optimism) and outcomes (distress, despair, QOL, and fatigue). Multiple linear regression models examined the joint effect of average changes in target subscales on average outcome changes, adjusted for baseline outcome scores and patient characteristics., Results: Participants (n=44) were: mean age 51 (SD, 12), 20% non-Caucasian, 50% college degree, and 75% married. Improvements in active coping skills, self-efficacy, and spiritual meaning/peace significantly correlated with an improvement in despair after adjustment for demographic characteristics (all P<0.05). Improvements in social support significantly correlated with positive changes in distress (P<0.05). Gains in learned optimism independently correlated with an increase in overall QOL (P<0.01)., Conclusions: In this pilot assessment, changes in pre-defined Pathfinders targets such as coping skills, social support, self-efficacy, spirituality, and optimism correlated with improvements in patient-reported outcomes., (Copyright © 2010 John Wiley & Sons, Ltd.)

Given that more than one third of some cohorts of cancer survivors exhibit post-traumatic stress disorder (PTSD) symptomatology, this study examines how trauma outcomes might relate to quality of life (QOL). Eight hundred thirty survivors of adult lymphoma were assessed for PTSD, post-traumatic growth (PTG) and QOL. Structural equation modeling revealed that QOL was best explained by the model in which stressors (e.g., co-morbidities) were mediated by PTSD and PTG. Trauma outcomes mediated the relationship between specific stressors and QOL. These findings support using PTSD and PTG as a diagnostic framework in understanding symptomatology in survivors.

Objective: Recent work suggests that perceptions of the impact of cancer on survivors' lives are associated with physical and mental health and quality of life (QOL) outcomes. This study examines the association between the Impact of Cancer Version 2 Scales (IOCv2) and these outcomes in a large sample of survivors of adult non-Hodgkin lymphoma (NHL)., Methods: Participants completed a mailed survey to assess physical and mental health (SF-36), cancer-specific QOL (FACT-G) and perceived impact of cancer (IOCv2). Hierarchical multiple regression models, in which demographic, clinical, psychosocial and IOCv2 measures were added sequentially, were employed to evaluate their contribution to explain variance in SF-36 and FACT-G scores., Results: A total of 652 post-treatment NHL survivors participated. Survivors with comorbidities and negative appraisals of life threat and treatment intensity reported worse physical and mental health and QOL (all p<0.05). After controlling for demographic and clinical characteristics, younger respondents reported better physical but worse mental health and QOL (all p<0.01). Lower IOCv2 Negative Impact (all p<0.001) and higher Positive Impact (all p<0.05) scores were associated with better physical and mental health and QOL after controlling for demographic, clinical and psychosocial characteristics., Conclusions: Findings suggest that perceptions of cancer's impact on survivors' lives may influence or be influenced by health status and functioning and QOL. Longitudinal research is needed to establish causality, which could lead to the development of interventions targeting survivors' impact of cancer concerns, and ultimately to the enhancement of overall health and QOL., (Copyright © 2010 John Wiley & Sons, Ltd.)

Purpose: Pathfinders is a multi-faceted psychosocial care program for cancer patients; it was developed in community oncology and adapted to the academic oncology setting. This prospective, single-arm, phase 2 pilot study examined the acceptability and feasibility of Pathfinders for women with metastatic breast cancer., Methods: Over 3 months, participants completed patient-reported surveys including the Patient Care Monitor (PCM, review of systems), Functional Assessment of Chronic Illness Therapy-Breast Cancer (FACT-B), Self Efficacy, and a single-item survey asking patients whether the program was helpful to them. A technology-based data collection system was used to capture electronic patient-reported outcomes at point of care, report symptoms in real time to clinicians, and collect warehouse data to provide a detailed longitudinal picture of the patient experience when receiving Pathfinders., Results: Participants (n = 50) were: mean age 51 (SD 11); 76% white, 20% black; 74% married; 50% college degree. Forty-two (n = 42) patients completed baseline and 3-month assessments. Statistically significant improvements (all P < 0.05) occurred in PCM subscales for Distress (mean [SE] = -3.42 [1.21]), Despair (-4.53 [1.56]), and Quality of Life (2.88 [0.97]), and the FACT-B Emotional Wellbeing subscale (2.07 [0.46]). Of the 29 participants asked if Pathfinders was helpful, 27 (93%) responded positively and two did not respond. Other instruments measuring symptoms, quality of life, and self-efficacy showed improvement., Conclusions: In a phase 2 pilot study, Pathfinders was helpful to patients and is feasible in an academic medical center. Follow-up data collected at the 3-month assessment suggest that the program impacts various psychological outcomes, notably distress and despair.

Introduction: Self-report instruments such as the Impact of Cancer (IOC) are designed to measure quality of life (QOL) impacts that cancer survivors attribute to their cancer experience. Generalizability of QOL findings across distinct diagnostic categories of survivors is untested. We compare measurement of the impact of cancer using the IOC instrument in breast cancer (BC) survivors (n = 1,188) and non-Hodgkin lymphoma (NHL) survivors (n = 652)., Methods: A registry-based sample of NHL survivors completed the IOC questionnaire and the FACT-G, FACT-LYM, Medical Outcomes Study (MOS) SF-36, Post-Traumatic Stress Disorder Checklist-Civilian Version, Post-Traumatic Growth Inventory and MOS Social Support scales. IOC responses of the NHL survivors were subjected to de novo scaling to identify impact domains for comparison to IOC version 2 (IOCv2) domains, which were previously developed based on BC survivor responses. Concurrent validity was assessed by correlating the IOCv2 scales with the other measures. IOCv2 scores were compared between the BC and NHL survivor samples., Results: The BC and NHL survivors exhibited similar impact domains and had factor structures that were largely congruent. The concurrent validity analysis revealed patterns of association that supported the interpretation and validity of the IOCv2 scales. Differences in IOCv2 scores between the BC and NHL groups suggested differential impacts in distinct survivor groups that could be detected using the IOCv2., Conclusion: The results suggest that the IOCv2 measures common and important survivor concerns and support its generalizability to the broader long-term cancer survivor population., Implications for Cancer Survivors: Instruments such as the IOCv2 can provide valid assessment of QOL impacts in long-term cancer survivors, facilitating the characterization of these impacts and development of appropriate interventions.

Background: : A growing body of evidence suggests that long-term survivors with 1 of the more common forms of adult cancer report a quality of life (QOL) similar to that in the general population. However, specific concerns have been identified (sexual dysfunction, fatigue, distress) in this population. Also, less is known concerning survivors of adult non-Hodgkin lymphoma (NHL), a disease often marked by alternating periods of disease and remission. Therefore, in the current study, the authors compared the QOL status of individuals who reported having active NHL with the QOL status of individuals who were disease-free short-term survivors (STS) (2-4 years postdiagnosis) and long-term survivors (LTS) (> or =5 years postdiagnosis)., Methods: Eligible survivors completed a mailed survey with validated measures, including physical and mental health status measured with the Medical Outcomes Study 36-item Short Form, cancer-related QOL, the Functional Assessment of Cancer Therapy-Lymphoma module, and self-reported impact of cancer. Other data were collected to examine as correlates., Results: : Seven hundred sixty-one survivors identified from 2 North Carolina cancer registries participated. The average survivor was 10.4 years postdiagnosis (range, 2-44 years postdiagnosis) and was age 62.7 years (range, 25-92 years). Survivors with active disease (n = 109) demonstrated worse physical and mental health functioning, worse QOL, and less positive and more negative impacts of cancer compared with disease-free survivors (n = 652; all P < or = .01). No significant differences were observed between STS and LTS., Conclusions: Although survivors with NHL who had active disease reported more negative outcomes compared with off-treatment survivors, the length of time after diagnosis did not appear to matter with regard to outcomes for STS or LTS. In addition, mixed results from comparisons with general population norms suggested the need for supportive care for this diverse survivorship group.

Purpose: A large body of evidence suggests that being diagnosed with and treated for cancer adversely affects functioning and quality of life, yet less is known about longer term outcomes. Therefore, this study aims to estimate the prevalence of post-traumatic stress disorder (PTSD) symptoms in survivors of adult non-Hodgkin's lymphoma (NHL) who are at least 2 years postdiagnosis and identify the risk factors associated with PTSD symptoms, with a focus on those that are amenable for screening and modifiable., Patients and Methods: A total of 886 NHL survivors identified from the cancer registries of two hospitals in North Carolina participated, ranging in age from 25 to 92 years old and ranging from 2 to 44 years postdiagnosis. Survivors were mailed a survey that assessed PTSD symptoms and quality of life., Results: Participants averaged 10.2 years postdiagnosis, and most (61%) reported no PTSD symptoms. The adjusted prevalence for full PTSD was 7.9%, with an additional 9.1% meeting criteria for partial PTSD. Modifiable risk factors that were independently associated with PTSD in multiple linear regression included less social support, negative appraisals of life threat and treatment intensity, and more employment and insurance issues. Additionally, several demographic characteristics (nonwhite race, less education, and younger age) and clinical or health-related factors (active disease, more recent diagnosis, and more comorbidity) were independently associated with PTSD., Conclusion: Although only 8% of survivors met PTSD diagnostic criteria, the impact of a cancer diagnosis and treatment persists for many survivors, as evidenced in 39% of this sample. Early identification of those at risk could enable treatment to minimize PTSD symptomatology.