Sophia K. Smith

Post-traumatic stress outcomes in non-Hodgkin's lymphoma survivors.

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-Hodgkins 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.

Patient and Provider Preferences for Survivorship Care Plans

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.

Health status and quality of life among non-Hodgkin lymphoma survivors

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) (≥5 years postdiagnosis).

Post-Traumatic Stress Symptoms in Long-Term Non-Hodgkin's Lymphoma Survivors: Does Time Heal?

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-Hodgkins 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.

Measuring the impact of cancer: a comparison of non-Hodgkin lymphoma and breast cancer survivors

IntroductionSelf-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).MethodsA 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.ResultsThe 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.ConclusionThe 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 SurvivorsInstruments 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.

Bridging the gap between financial distress and available resources for patients with cancer: a qualitative study.

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.

Quality of Life Among Long-Term Survivors of Non-Hodgkin Lymphoma: A Follow-Up Study

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 cancers impact were independent predictors of poor QOL. Lymphoma symptom burden, less social support, and having received a transplantation were related to negative perceptions of cancers 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 cancers impact are associated with QOL cross-sectionally and longitudinally; modifying these perceptions may thus provide a strategy for improving QOL.

Correlates of quality of life-related outcomes in breast cancer patients participating in the Pathfinders pilot study.

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.

Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey

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.

Quality of life domains among non-Hodgkin lymphoma survivors: an integrative literature review

Survival rates of individuals with non-Hodgkin lymphoma (NHL) have increased in the past several years, as has the prevalence of older adults who are managing late and long-term effects of the disease and its treatment. In this integrative review, the state of the science for determining the quality of life (QOL) among NHL survivors is outlined. An online search of Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, and the Cochrane Library databases was conducted using the following Keywords: non-Hodgkin lymphoma, health-related quality of life, quality of life, and impact of cancer. Eighteen studies published between 2000 and 2010 are reviewed. Of these, 17 were descriptive, cross-sectional designs, and one was a systematic review. The studies included participants of varying ages and years post-diagnosis as reported in several countries. Importantly, many used one or more QOL measures as outcome variables. Future research is needed on older and minority cancer populations and should include longitudinal and interventional studies.