Engagement with INSPIRE, an Online Program for Hematopoietic Cell Transplantation Survivors.

In a secondary analysis of a randomized controlled trial (RCT), we examined participants' engagement with INSPIRE, a personalized online program for hematopoietic cell transplantation (HCT) survivors that focuses on cancer-related distress, depression, fatigue, and health care needs. We approached all adult, 3- to 18-year HCT survivors treated for hematologic malignancy without relapse or second cancer in the previous 2 years for participation in an RCT with either immediate or delayed access to INSPIRE. Participants with immediate access could view the online material at any time. Data included page view tracking, medical records, and patient-reported outcomes, including the Short Form 36 and Cancer and Treatment Distress (CTXD) measures. Of 1322 eligible HCT survivors, 771 (58%) completed the baseline assessment, and 451 received immediate INSPIRE access and were included in analyses. The cohort was 56% male, with a mean age of 52 ± 12.2 years, and 26% received an autologous transplant. Most (77%) logged into the INSPIRE site at least once, and 48% viewed ≥8 pages. Survivors who viewed ≥2 pages were more likely to be age ≥40 years (relative risk [RR], 1.41; 95% confidence interval [CI], 1.10 to 1.80), to be female (RR, 1.22; 95% CI, 1.07 to 1.40), to have chronic graft-versus-host disease (RR, 1.28; 95% CI, 1.08 to 1.51), to be less than 10 years post-HCT (RR, 1.19; 95% CI, 1.01 to 1.39), and to have moderate CTXD distress (RR, 1.34; 95% CI, 1.14 to 1.57). Engagement did not differ by race, education, income, rural/urban residence, computer experience, donor type, or depression (all P ≥ .50). The INSPIRE online program was widely used, including by those who often have reduced access to care after treatment.

Risk factors for depression in patients undergoing hematopoietic cell transplantation.

Despite the prevalence and known adverse impacts of depression after hematopoietic cell transplantation (HCT), little is known about the trajectory of depression occurring after HCT, or which pretransplantation risk factors might help predict new or worsening post-HCT depression. This secondary analysis evaluated the relationships between pre-HCT patient-reported outcomes and demographic characteristics and post-HCT depression. A total of 228 adult HCT patients were evaluated pre-HCT (T1) and again at 6 to 7 weeks post-HCT (T2), using touch-screen computers in the transplantation clinic during participation in a larger trial. Measures evaluated included the Symptom Distress Scale, the EORTC QLQ-C30 for quality of life, a single-item pain intensity question, and the Patient Health Questionnaire 9 for measurement of depression. At T1, rates of depression were quite low, with only 6% of participants reporting moderate or higher depression. At T2, however, the prevalence of moderate or higher depression was 31%. We observed a strong linear relationship in PHQ-9 scores between T1 and T2 (P < .0001). Depression score at T1 was a significant predictor of depression score at T2 (P = .03), as was poorer emotional function at T1 (P < .01). Our results indicate that post-HCT depression is common, even in patients with a low pre-HCT depression score. Frequent screening for symptoms of depression at critical time points, including 6 to 7 weeks post-HCT, are needed in this population, followed by referrals to supportive care as appropriate.

Psychosocial care in cancer.

Psychosocial care for cancer patients historically has been overlooked as an aspect of quality clinical care. However, several organizations have recently made strong recommendations for inclusion of psychosocial care across the continuum of treatment, from diagnosis, through treatment, into survivorship, and in the palliative stages of care. The evidence base for screening, diagnosis, and effective treatment of psychosocial issues in the context of cancer care is growing. Recent highly relevant research covering major topics in psycho-oncology, including distress, delivery of care, psychoneuroimmunology, and cognitive deficits related to cancer, is reviewed in this article.

Measuring social activities and social function in long-term cancer survivors who received hematopoietic stem cell transplantation.

OBJECTIVE: Cancer survivors report deficits in social functioning even years after completing treatment. Commonly used measures of social functioning provide incomplete understanding of survivors' social behavior. This study describes social activities of survivors and evaluates the psychometric properties of the Social Activity Log (SAL) in a cohort of long-term survivors of hematopoietic stem cell transplantation (HSCT) for cancer. METHODS: One hundred and two (5-20 year) survivors completed the SAL, Short-Form-36 Health Survey (SF-36), and other patient-reported outcomes. Principal components analysis determined the factor structure of the SAL along with correlations and regressions to establish validity. RESULTS: Principal component analysis yielded three factors in the SAL: 'non-contact events' (e.g. telephone calls), 'regular events' (e.g. played cards), and 'special events' (e.g. concerts), which explained 59% of the total variance. The SAL possessed good internal consistency (Cronbach's alpha=0.82). SF-36 social function and SAL were moderately correlated (r=0.31). In linear regressions, physical function and depression explained 16% of the variance in the SAL (P<0.001), while physical function, depression, and fatigue predicted 55% of the variance in SF-36 social function (P<0.001). CONCLUSIONS: Results support the use of the SAL as a measure of social activity in cancer survivors who received HSCT. Although the SAL is designed to measure social behaviors, SF-36 social function assesses subjective experience and is more strongly associated with depression and fatigue. The SAL appears to be a promising tool to understand the behavioral social deficits reported by long-term survivors of cancer.

An online randomized controlled trial, with or without problem-solving treatment, for long-term cancer survivors after hematopoietic cell transplantation.

PURPOSE: This randomized controlled trial examines the efficacy of INSPIRE, an INternet-based Survivorship Program with Information and REsources, with or without problem-solving treatment (PST) telehealth calls, for survivors after hematopoietic cell transplantation (HCT). METHODS: All adult survivors who met eligibility criteria were approached for consent. Participants completed patient-reported outcomes at baseline and 6 months. Those with baseline impaired scores on one or more of the outcomes were randomized to INSPIRE, INSPIRE + PST, or control with delayed INSPIRE access. Outcomes included Cancer and Treatment Distress, Symptom Checklist-90-R Depression, and Fatigue Symptom Inventory. Planned analyses compared arms for mean change in aggregated impaired outcomes and for proportion of participants improved on each outcome. RESULTS: Of 1306 eligible HCT recipients, 755 (58%) participated, and 344 (45%) had one or more impaired scores at baseline. We found no reduction in aggregated outcomes for either intervention (P > 0.3). In analyses of individual outcomes, participants randomized to INSPIRE + PST were more likely to improve in distress than controls (45 vs. 20%, RR 2.3, CI 1.0, 5.1); those randomized to INSPIRE alone were marginally more likely to improve in distress (40 vs. 20%, RR 2.0, CI 0.9, 4.5). CONCLUSIONS: The INSPIRE online intervention demonstrated a marginal benefit for distress that improved with the addition of telehealth PST, particularly for those who viewed the website or were age 40 or older. IMPLICATIONS FOR CANCER SURVIVORS: Online and telehealth programs such as INSPIRE offer opportunities to enhance HCT survivorship outcomes, particularly for mood, though methods would benefit from strategies to improve efficacy.

Prospective neurocognitive function over 5 years after allogeneic hematopoietic cell transplantation for cancer survivors compared with matched controls at 5 years.

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.

Development and implementation of an Internet-based survivorship care program for cancer survivors treated with hematopoietic stem cell transplantation.

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.

Measuring musculoskeletal symptoms in cancer survivors who receive hematopoietic cell transplantation.

INTRODUCTION: Beyond documentation of high prevalence rates, research has not examined the qualities and characteristics of musculoskeletal symptoms in cancer survivors, possibly because measures have not been validated specifically for the assessment of these symptoms in survivors. We report here on a new measure of muscle and joint symptoms for survivors of hematologic malignancies and hematopoietic cell transplantation (HCT). METHODS: In a cross-sectional design, 130 adults, 5-20 years after HCT, completed patient-reported outcomes. Assessment included musculoskeletal symptoms on the Muscle and Joint Measure (MJM), as well as health-related quality of life and treatments. RESULTS: Principal components analysis using promax rotation revealed four subscales for the MJM with item factor loadings above 0.50: muscle aches or stiffness (myalgias), joint pain, stiffness or swelling (arthralgias), muscle cramps, and muscle weakness. Variance explained by the total score was 77%. Internal consistency reliabilities of the subscales and total score ranged from 0.86 to 0.93. Validity was confirmed by correlations with the Short Form-36 bodily pain, physical function and vitality subscales, the Fatigue Symptom Inventory, and the Symptom Checklist-90-R depression (all P < .001). CONCLUSIONS: Musculoskeletal symptoms in survivors who received HCT can be measured reliably and validly with the MJM. The measure requires testing to establish its psychometric properties with other diagnostic and treatment groups. IMPLICATIONS FOR CANCER SURVIVORS: The MJM has potential research and clinical value for addressing the musculoskeletal symptoms of survivors. The measure may assist with examining the mechanisms as well as treatments for these symptoms, which are among the most prevalent in long-term cancer survivors.