Feasibility and acceptability of electronic symptom surveillance with clinician feedback using the Patient-Reported Outcomes version of Common Terminology Criteria for Adverse Events (PRO-CTCAE) in Danish prostate cancer patients

Abstract Background The aim was to examine the feasibility, acceptability and clinical utility of electronic symptom surveillance with clinician feedback using a subset of items drawn from the Patient-Reported Outcomes version of Common Terminology Criteria for Adverse Events (PRO-CTCAE) in a cancer treatment setting. Methods Danish-speaking men with castration-resistant metastatic prostate cancer receiving treatment at the Department of Oncology, Rigshospitalet, Copenhagen between March 9, 2015 and June 8, 2015 were invited to participate (n = 63 eligible). Participants completed the PRO-CTCAE questionnaire on tablet computers using AmbuFlex software at each treatment visit in the outpatient clinic. In total, 22 symptomatic toxicities (41 PRO-CTCAE items), corresponding to the symptomatic adverse-events profile associated with the regimens commonly used for prostate cancer treatment (Docetaxel, Cabazitaxel, Abiraterone, Alpharadin), were selected. Participants’ PRO-CTCAE responses were presented graphically to their treating oncologists via an AmbuFlex dashboard, for real-time use to enhance the patient-clinician dialogue that occurs during the consultation prior to each treatment cycle. Technical and clinical barriers and acceptability were evaluated through semi-structured interviews with both patients and oncologists. Patients receiving active treatment at the end of the study period completed an evaluation questionnaire. Results Fifty-four out of sixty-three (86%) eligible patients were enrolled. The PRO-CTCAE questionnaire was completed a total of 168 times by 54 participants (median number per patient was 3, range 1–5). Eight surveys were missed, resulting in a compliance rate of 97%. At the end of the study period, 35 patients (65%) were still receiving active treatment and completed the evaluation questionnaire. Patients reported that their PRO-CTCAE responses served as a communication tool. Oncologists stated that the availability of the PRO-CTCAE self-reports during the consultation improved patient-clinician communication about side effects. Conclusion Electronic capture of symptomatic toxicities using PRO-CTCAE and the submission of self-reports to clinicians prior to consultation were feasible among metastatic prostate cancer patients receiving chemotherapy in an outpatient setting, and this procedure was acceptable to both patients and clinicians. Continued research, including a cluster-randomized trial, will evaluate the effects of submitting patients’ PRO-CTCAE results to clinicians prior to consultation on the quality of side-effects management and resultant clinical outcomes

Understanding quality data correctly : a randomized comparison of presentation formats among cancer patients and relatives

Background: Patient representatives are increasingly engaged in quality in health care, and even though quality data are publicly available, correct interpretation may be challenging. We designed a randomized study with the primary aim to examine the association between preferred data presentation format and the interpretation of quality data among cancer patients and relatives. Material and methods: Surveys were distributed to the Danish Cancer Society Citizens’ Panel between 31 March and 14 April 2019 and 55% completed the survey (N = 464) including six storyboards that presented authentic quality data in table format, league table and point estimates. The storyboards were randomized to expose participants to the data in the three different formats and in varying presentation order. Logistic regression models were used to calculate Odds Ratios (ORs) and 95% confidence intervals (CIs) for the association between preferred presentation format, health literacy, education and cohabitation status as exposures and interpretation of quality data as outcome. Results: The majority of participants (97%) had high literacy and 57% had a medium or long higher education. A total of 60% found the questions difficult or very difficult and 33% were not able to correctly interpret at least one format. Correct interpretation was associated with preferred league table (OR = 1.62; 95% CI = 1.04–5.52) and if the data was presented in the preferred format. Medium and long education were associated with correct interpretation of at least one format (OR = 1.93; 95% CI = 1.16–3.21 and OR = 3.89; 95% CI = 1.90–7.95, respectively) while health literacy and cohabitation status were not. Conclusions: More than one third of the participants were not able to correctly interpret the data and the understanding of quality data improved with longer education and if the data was presented in the preferred format. Decision-makers should carefully consider displaying quality data according to preferred presentation format and to guide interpretation for individuals with short education

Residential exposure to traffic noise and health-related quality of life--a population-based study.

Few studies have investigated the association between objectively measured traffic noise and health-related quality of life. However, as traffic noise has been associated with both cardiovascular disease and diabetes, and health-issues including sleeping problems, annoyance, and stress, it seems plausible that traffic noise is associated with health-related quality of life.Between 1999 and 2002, a cohort of 38,964 Danes filled in the short form-36 (SF-36) questionnaire. Residential exposure to road traffic and railway noise was calculated for all historical addresses for 10 years preceding the SF-36, using the Nordic prediction method. Associations between noise exposure and SF-36 summary scales and the eight sub-scales were calculated using general linear models, adjusted for age, sex, socioeconomic status, and lifestyle.Models adjusted for age, sex and socioeconomic factors showed that a 10 dB higher road traffic noise 1 year preceding SF-36 assessment was associated with a 0.14 lower mental component summary (MCS) score (95% confidence interval (CI) -0.26, -0.01). However, further adjustment for lifestyle factors (smoking, alcohol, and waist circumference) attenuated the association: (-0.08 (95% CI: -0.20, 0.04)). Exposure to more than 55 dB of railway noise in the same time period was borderline significantly associated with lower MCS. The physical component summary was not associated with traffic noise.The present study suggests a weak association between traffic noise exposure and the mental health component score of SF-36, which may operate through lifestyle. The magnitude of effect was, however, not clinically relevant