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

Abstract

A B S T R A C T PurposeThe 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 MethodsA 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. ResultsWe 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 Ϫ0.04 (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 ϭ .02) in the intervention group. Baseline SDS-15 score (P Ͻ .001) and clinical service (P ϭ .01) were predictive. Multivariable analyses suggested an interaction between age and study group (P ϭ .06); in subset analysis, the benefit of intervention was strongest in those age Ͼ 50 years (P ϭ .002). ConclusionWeb-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 Ͼ 50 years, in particular, may have benefited from the intervention.

Can patient-reported measurements of pain be used to improve cancer pain management? A systematic review and meta-analysis

“…Nine trials used pen and paper,19 23 25 26 28 34 40 45 four used touch screen devices or personal digital assistants to collect the data,20 36 37 41 three used automated telephone monitoring,17 18 35 one used web-based systems,21 and in two trials, the patient was interviewed by a nurse27 or a health educator29 for the data. One study offered a choice between automated telephone monitoring or online monitoring 33…”

“…Summary data were given to a clinician in advance of a consultation in eight studies 17 20 21 28 36 37 40 42. None of the clinicians in these studies were given specific instructions about how to use the data except in the study by Vallières et al ,41 in which clinicians were asked to alter analgesics according to the WHO's analgesic ladder.…”

“…Five studies17 21 27 29 34 used the patient-generated data to target education on analgesic use, self-management skills and communicating about pain. Berry et al 21 embedded automated tailored coaching messages into their web-based intervention.…”

Development and Use of New Therapeutics for Rare Diseases: Views from Patients, Caregivers, and Advocates

“…Many of the participants touched on facets of the patient-centered outcomes research movement, in which patients engage in the research process not just as study subjects but also as active participants in the design and conduct of the research [27]. For example, patients expressed desires to influence the selection of study outcomes and have a say in the design, such as by helping to select the comparator.…”

Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

“…293 PROMs completion is often embedded in broader self-management support interventions, and a number of studies have examined the feasibility and acceptability of web-based PROMs completion 313,314 and its impact on patient outcomes. [315][316][317][318] The process of self-monitoring and its role in supporting self-management for people with long-term conditions has been considered in a number of existing systematic reviews. 319,320 We have not focused on exploring whether or not and how patients use PROMs to self-manage long-term conditions.…”