Nigel Bush

Quality of life of 125 adults surviving 6-18 years after bone marrow transplantation

BACKGROUND Recent studies examining the medical and psychosocial sequelae of bone marrow transplantation have reported most survivors do relatively well while a smaller group continues to experience less than optimal quality of life (QOL). Many of these studies are limited by small sample sizes, limited scope, and focus on a narrow (1-4 year) window of survival. METHODS The descriptive survey examined the QOL, late medical complications, psychological distress, demands of long-term recovery, and health perceptions of 125 adults surviving 6-18 (mean 10) years after marrow transplantation. Seven wide-ranging tests covering 271 items were completed on average in 90 min. Two tests were developed by the authors specifically for assessing QOL in this population. RESULTS 74% of long-term survivors of bone marrow transplantation reported their current QOL was the same or better than before transplantation, 80% rated their current health status and QOL as good to excellent, and 88% said the benefits of transplantation outweighed the side effects. Ten years or more post-transplantation, long-term survivors continued to experience a moderate incidence of lingering complications and demands, including emotional and sexual dysfunction, fatigue, eye problems, sleep disturbance, general pain and cognitive dysfunction. However, the severity or degree of distress attributed to those complications was, for most survivors, consistently low. Nearly all were back to work or school. Only 5% rated both their QOL and health status as poor. Long-term survivors demonstrated good mood and low psychological distress compared to cancer and population norms, and had the same perceptions as the general population of their current health and expectation of future health. Demands attributed to long-term survival appeared to impose little hardship. The most frequently cited demand of recovery was the perceived lack of social support as time went on. CONCLUSIONS Almost all long-term survivors were leading full and meaningful lives. Persistent complications were, on the whole, dismissed as relatively trivial and the overwhelming majority viewed themselves as cured and well.

Enhancing Patient-Provider Communication With the Electronic Self-Report Assessment for Cancer: A Randomized Trial

PURPOSE Although patient-reported cancer symptoms and quality-of-life issues (SQLIs) have been promoted as essential to a comprehensive assessment, efficient and efficacious methods have not been widely tested in clinical settings. The purpose of this trial was to determine the effect of the Electronic Self-Report Assessment-Cancer (ESRA-C) on the likelihood of SQLIs discussed between clinicians and patients with cancer in ambulatory clinic visits. Secondary objectives included comparison of visit duration between groups and usefulness of the ESRA-C as reported by clinicians. PATIENTS AND METHODS This randomized controlled trial was conducted in 660 patients with various cancer diagnoses and stages at two institutions of a comprehensive cancer center. Patient-reported SQLIs were automatically displayed on a graphical summary and provided to the clinical team before an on-treatment visit (n = 327); in the control group, no summary was provided (n = 333). SQLIs were scored for level of severity or distress. One on-treatment clinic visit was audio recorded for each participant and then scored for discussion of each SQLI. We hypothesized that problematic SQLIs would be discussed more often when the intervention was delivered to the clinicians. RESULTS The likelihood of SQLIs being discussed differed by randomized group and depended on whether an SQLI was first reported as problematic (P = .032). Clinic visits were similar with regard to duration between groups, and clinicians reported the summary as useful. CONCLUSION The ESRA-C is the first electronic self-report application to increase discussion of SQLIs in a US randomized clinical trial.

Depression screening using the Patient Health Questionnaire-9 administered on a touch screen computer

Objective: To (1) evaluate the feasibility of touch screen depression screening in cancer patients using the Patient Health Questionnaire‐9 (PHQ‐9), (2) evaluate the construct validity of the PHQ‐9 using the touch screen modality, and (3) examine the prevalence and severity of depression using this screening modality.

Electronic Self-Report Assessment for Cancer and Self-Care Support: Results of a Multicenter Randomized Trial

PURPOSE The purpose of this trial was to evaluate the effect of a Web-based, self-report assessment and educational intervention on symptom distress during cancer therapy. PATIENTS AND METHODS A total of 752 ambulatory adult participants were randomly assigned to symptom/quality-of-life (SxQOL) screening at four time points (control) versus screening, targeted education, communication coaching, and the opportunity to track/graph SxQOL over time (intervention). A summary of the participant-reported data was delivered to clinicians at each time point in both groups. All participants used the assessment before a new therapeutic regimen, at 3 to 6 weeks and 6 to 8 weeks later, completing the final assessment at the end of therapy. Change in Symptom Distress Scale-15 (SDS-15) score from pretreatment to end of study was compared using analysis of covariance and regression analysis adjusting for selected variables. RESULTS We detected a significant difference between study groups in mean SDS-15 score change from baseline to end of study: 1.27 (standard deviation [SD], 6.7) in the control group (higher distress) versus -0.04 (SD, 5.8) in the intervention group (lower distress). SDS-15 score was reduced by an estimated 1.21 (95% CI, 0.23 to 2.20; P = .02) in the intervention group. Baseline SDS-15 score (P < .001) and clinical service (P = .01) were predictive. Multivariable analyses suggested an interaction between age and study group (P = .06); in subset analysis, the benefit of intervention was strongest in those age > 50 years (P = .002). CONCLUSION Web-based self-care support and communication coaching added to SxQOL screening reduced symptom distress in a multicenter sample of participants with various diagnoses during and after active cancer treatment. Participants age > 50 years, in particular, may have benefited from the intervention.

Physician Participation in Research Surveys A Randomized Study of Inducements to Return Mailed Research Questionnaires

The authors randomly selected 400 physicians from a population of 1,545 practicing physicians providing follow-up care to patients who received bone marrow or blood stem cell transplants at the Fred Hutchinson Cancer Research Center to determine interest in receiving Internet-based transplant information. In a two-factor completely randomized factorial design, the 400 physicians were assigned to receive mailed surveys with either no compensation or a

Development, feasibility and compliance of a web-based system for very frequent QOL and symptom home self-assessment after hematopoietic stem cell transplantation

5 check and either no follow-up call or a follow-up call 3 weeks after mailing. Overall, 51.5% of the physicians returned the mailed surveys. Comparison of logit models showed that inclusion of a

Predictors of women's internet access and internet health seeking

5 check in the mailer significantly (p = .016) increased the probability of returning the surveys (57.5% vs. 45.5%). In contrast, the telephone follow-up had no overall effect. The authors concluded a modest financial reward can significantly improve physician response rates to research surveys but a telephone follow-up may be inefficient and even ineffective.

Behavioral screening measures delivered with a smartphone app: psychometric properties and user preference.

We believe that many adverse events following hematopoietic stem cell transplantation (HSCT), particularly relapse and chronic graft-versus-host disease (CGVHD), are preceded by a subclinical period of development that is accessible by frequent psychometric assessment. Documenting these associations could improve future clinical care by extending the potential window for intervention. However, conventional methods of assessing quantity of lite (QOL) in patients in their homes, typically by mailed self-assessment questionnaires, are impractical for very frequent administration. We have developed and implemented a web-based system for measuring short-term (dynamic) changes in QOL by employing brief, online, daily QOL assessments and more extensive, monthly online assessments from patients’ homes. Here we report the feasibility of collecting very frequent patient home self-assessments of QOL via the web for a 52 week participation period; we detail incidence of home web access, accrual, compliance, and satisfaction with the system in an HSCT patient sample. We also describe our integrated web-systems for administering patient recruitment, scheduling, monitoring, and analysis. Our results suggest that very frequent routine collection of QOL outcomes is entirely feasible using our web-based home assessment tool, with good patient compliance and high user satisfaction. We believe our methodology shows great promise for use with other cancer and health populations.

Suicides and Suicide Attempts in the U.S. Military, 2008-2010.

A random, population-based sample of 431 women aged 18–74 in King County, Washington, USA, completed a survey module on Internet use and access. Level of mental health, level of general health perceptions, older age, and higher income predicted womens health-related Internet use. Participants without access reported various barriers to obtaining access; perceived lack of usefulness of the Internet as an information source and unfamiliarity with using this technology appear equally important reasons as financial cost for not adopting the Internet. Internet use motivators are complex; these findings have relevance to the design of Internet-based interventions.

Acceptability of an Electronic Self Report Assessment Program for Patients with Cancer

Abstract The smartphone is an increasingly widespread technological vehicle for general health and psychological health promotion, evaluation, education, and sometimes intervention. However, the psychometric performance of behavioral health screening measures has not been commonly evaluated for the new, small-format, touch-screen medium. Before mobile-based applications for behavioral health screening can be disseminated confidently, the reliability and the validity of measures administered by the smartphone must be evaluated. We compared psychometric properties (i.e., internal consistency and test-retest reliability) of seven behavioral health measures completed on paper, a computer, and an iPhone by 45 army soldiers. The results showed the internal consistencies of the smartphone-delivered measures to be equivalent and very high across all three modalities and the test-retest reliability of the iPhone measures also to be very high. Furthermore, completion of the behavioral screening measures by the iPhone was highly preferred over the other modalities and was reported to be easy and convenient. Our findings help corroborate the use of smartphones and other small mobile devices for behavioral health screening.