Karen L. Syrjala

Background: This study examines the psychometric properties of a measure of distress specific to cancer and its treatment, as tested in patients receiving hematopoietic cell transplantation (HCT).Methods: With multicenter enrollment, the Cancer and Treatment Distress (CTXD) measure was administered to adults beginning HCT as part of an assessment that included the Center for Epidemiologic Studies Depression (CESD), Profile of Mood States, and Medical Outcomes Study Short Form 36 (SF‐36).Results: From eight transplant centers, 176 of 219 eligible patients completed the assessment. Average age was 46.7 years (SD = 11.9), 59% were male, and the majority were identified as Caucasian (93%). Principal components analysis with the CTXD identified 22 items that loaded onto six factors explaining 69% of the variance: uncertainty, health burden, identity, medical demands, finances, and family strain. Internal consistency reliability for the 22 items was 0.91. The receiver operating characteristic area under the curve was 0.85 (95% CI [0.79, 0.91]), with a cut point of 1.1 resulting in a sensitivity rate of 0.91 and a specificity rate of 0.58. Convergent validity and divergent validity were confirmed with large correlations of the CTXD total score with the CESD, Profile of Mood States, and SF‐36 mental health; and a smaller correlation with the SF‐36 physical function (r = −0.30).Conclusions: The CTXD is a reliable and valid measure of distress for HCT recipients and captures nearly all cases of depression on the CESD in addition to detecting distress in those who are not depressed. It has potential value as both a research and clinical screening measure for distress. Copyright © 2015 John Wiley & Sons, Ltd.

Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child’s health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation. This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child’s BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables. PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach’s α was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01). Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care.

To identify factors associated with parent activation in parents of children undergoing pediatric hematopoietic stem cell transplant (HSCT) in the 6 months following HSCT, and to address if their association with parent activation changes over time.

This review examines evidence for psychological factors that affect pain across the cancer continuum from diagnosis through treatment and long-term survivorship or end of life. Evidence is convincing that emotional distress, depression, anxiety, uncertainty, and hopelessness interact with pain. Unrelieved pain can increase a desire for hastened death. Patients with cancer use many strategies to manage pain, with catastrophizing associated with increased pain and self-efficacy associated with lower pain reports. A variety of psychological and cognitive behavioral treatments can reduce pain severity and interference with function, as indicated in multiple meta-analyses and high-quality randomized controlled trials. Effective methods include education (with coping skills training), hypnosis, cognitive behavioral approaches, and relaxation with imagery. Exercise has been tested extensively in patients with cancer and long-term survivors, but few exercise studies have evaluated pain outcomes. In survivors post-treatment, yoga and hypnosis as well as exercise show promise for controlling pain. Although some of these treatments effectively reduce pain for patients with advanced disease, few have been tested in patients at the end of life. Given the clear indicators that psychological factors affect cancer pain and that psychological and behavioral treatments are effective in reducing varying types of pain for patients with active disease, these methods need further testing in cancer survivors post-treatment and in patients with end-stage disease. Multidisciplinary teams are essential in oncology settings to integrate analgesic care and expertise in psychological and behavioral interventions in standard care for symptom management, including pain.

This review highlights long-term and late consequences of hematopoietic cell transplantation (HCT) as well as strategies to manage or prevent complications that are more prevalent after HCT than most other cancer treatments. Chronic graft-versus-host disease stands out as a unique late effect of allogeneic HCT that is not seen after other types of cancer treatment. However, many other complications seen after solid tumor treatments are also common after HCT, including infections, second cancers, bone loss, and cardiovascular, pulmonary, renal, and endocrine dysfunction. Symptoms and syndromes that are reported after HCT include sexual dysfunction, cognitive problems, fatigue, insomnia, musculoskeletal symptoms, emotional distress, anger, and depression. Addressing these complex potential or actual complications requires diligent routine health care to intervene early or, when possible, to prevent late complications. To accomplish early detection and prevention of life-threatening complications, HCT survivors should undergo an annual comprehensive physical examination that includes screening for functional and psychosocial consequences of treatment and encouraging healthy lifestyle behaviors. Clinicians can link survivors to numerous online, print, and video resources to help them advocate for their health needs.

The LIVESTRONG Centers of Excellence were funded to increase the effectiveness of survivorship care in oncology practice. This study describes the ongoing process of adopting and implementing survivorship care using the framework of the diffusion of innovation theory of change. Primary data collection included telephone interviews with 39 members from the eight centers and site visits. Organizational characteristics, overall progress, and challenges for implementation were collected from proposals and annual reports. Creating an awareness of cancer survivorship care was a major accomplishment (relative advantage). Adoption depended on the fit within the cancer center (compatibility), and changed over time based on trial and error (trialability). Implementing survivorship care within the existing culture of oncology and breaking down resistance to change was a lengthy process (complexity). Survivorship care became sustainable as it became reimbursed, and more new patients were seen (observability). Innovators and early adopters were crucial to success. Diffusion of innovation theory can provide a strategy to evaluate adoption and implementation of cancer survivorship programs into clinical practice.

Purpose Clinical trials have demonstrated the benefits of exercise for cancer survivors. This investigation determined the effectiveness and safety of a disseminated community-based exercise program for cancer survivors who had completed treatment. Methods Personal trainers from regional YMCAs received training in cancer rehabilitation and supervised twice-a-week, 12-week group exercise sessions for survivors. At baseline and post-program, validated measures assessed patient-reported outcomes (PRO) and physiologic measurements. Results Data were collected from 221 survivors from 13 YMCA sites and 36 separate classes. All participants had data available at one time point, while matched baseline and post-program PRO and physiologic data were available for 85% (N = 187). Participants with matched data were largely female (82%), with mean age of 58 (range, 28–91 years). Time since diagnosis ranged from 1 to 48 (mean, 5.6 years), and mean time since last treatment was 3.0 (range, 1–33 years). Physiological improvements were significant in systolic (P < 0.001) and diastolic (P = 0.035) blood pressure, upper and lower body strength, the 6-min walk test (P = 0.004), and flexibility (P < 0.001). Participants reported improvements in overall health-related quality of life (P < 0.001), social support (P = 0.019), body pain (P = 0.016), fatigue (P < 0.001), insomnia (P < 0.001), and overall musculoskeletal symptoms (P = <0.001). Few injuries or lymphedema events occurred during classes. Conclusions Community-based exercise groups for cancer survivors of mixed diagnoses and ages, who have completed active treatment, have physiologic and psychosocial benefits, and are safe. Implications for cancer survivors Survivors may expect significant benefit from participating in a community-based exercise program tailored to meet their individual needs as a survivor.

Introduction This study evaluates the concordance of treatment summaries (TSs) and survivorship care plans (SCPs) delivered to breast cancer survivors within the LIVESTRONG™ Network of Survivorship Centers of Excellence with Institute of Medicine (IOM) recommendations and describes additional structure/process variables. Method Seven NCI-designated comprehensive cancer centers and six community-based centers participated. TS/SCPs for 65 patients were rated against IOM recommendations using a study-derived checklist, and surveys were administered to better understand the structure and process of delivering TSs/SCPs. Results On average, fewer than half of IOM content recommendations were met for TSs (M = 46%) and less than two thirds for SCPs (M = 59%). No sites achieved ≥75% overall concordance with IOM recommendations for TSs and only two of 13 met this criterion for SCPs. Content domain scores across sites varied widely, as did the number of sites addressing domain content with ≥75% concordance. Nonetheless, resources required for document preparation and delivery were substantial. Discussion Gaps in concordance with IOM recommendations exist even in dedicated survivorship centers. A substantial time burden was also noted. Further research is needed to determine which informational elements are essential, to develop and test strategies for improving efficiency and reach, and to determine if outcomes of survivorship care planning warrant the resources required in their preparation and delivery. Implications for survivors TSs and SCPs have been recommended for all cancer survivors. Essential elements must be determined, approaches made more efficient, outcome improvements demonstrated, and cost-benefit analyses determined before survivors should expect widespread implementation of this recommendation for survivorship care.

Purpose: Research has documented cognitive deficits both before and after high-dose treatment followed by allogeneic hematopoietic cell transplantation (HCT), with partial recovery by 1 year. This study prospectively examined the trajectory and extent of long-term cognitive dysfunction, with a focus on 1 to 5 years after treatment. Patients and Methods: Allogeneic HCT recipients completed standardized neuropsychological tests including information processing speed (Trail Making A and Digit Symbol Substitution Test), verbal memory (Hopkins Verbal Learning Test–Revised), executive function (Controlled Oral Word Association Test and Trail Making B), and motor dexterity and speed (Grooved Pegboard). Survivors (n = 92) were retested after 80 days and 1 and 5 years after transplantation. Case-matched controls (n = 66) received testing at the 5-year time point. A Global Deficit Score (GDS) summarized overall impairment. Response profiles were analyzed using linear mixed effects models. Results: Survivors recovered significant cognitive function from post-transplantation (80 days) to 5 years in all tests (P < .0001) except verbal recall (P > .06). Between 1 and 5 years, verbal fluency improved (P = .0002), as did executive function (P < .01), but motor dexterity did not (P > .15), remaining below controls (P < .0001) and more than 0.5 standard deviation below population norms. In GDS, 41.5% of survivors and 19.7% of controls had mild or greater deficits (NcNemar test = 7.04, P = .007). Conclusion: Although neurocognitive function improved from 1 to 5 years after HCT, deficits remained for more than 40% of survivors. Risk factors, mechanisms and rehabilitation strategies need to be identified for these residual deficits.

Introduction The Internet provides a widely accessible modality for meeting survivorship care needs of cancer survivors. In this paper, we describe the development and implementation of an Internet site designed as a base from which to conduct a randomized controlled trial to meet psycho-educational needs of hematopoietic stem cell transplantation (HSCT) survivors. Methods A cross-disciplinary team designed, wrote content, and programmed an Internet site for online study registration, consent, assessment, and study implementation. All survivors who were 3–18 years after HSCT for hematologic malignancy and treated at one transplant center were approached by mail for participation. All study activities could be conducted without study staff contact. However, participants had options for phone or email contact with study staff as desired. Results Of 1,775 participants approached for the study, 775 (58% of those eligible) consented and completed baseline assessment. Mean age was 51.7 (SD, 12.5; age range, 18–79 years), with 56% male. Fifty-seven percent required staff contact one or more times; a majority were for minor technical issues or delays in completion of enrollment or baseline assessment. Discussions/conclusions This study demonstrated the potential for providing Internet-based survivorship care to long-term survivors of HSCT. Although building a survivorship Internet site requires a team with diverse expertise, once built, these resources can be implemented rapidly with large numbers of survivors. Implications for cancer survivors While Internet-based services will not meet all the needs of cancer survivors, this methodology represents an important modality for augmenting onsite clinical services as a method for meeting psycho-educational, information, and resource needs of cancer survivors.