Willingness of Patients with Breast Cancer in the Adjuvant and Metastatic Setting to Use Electronic Surveys (ePRO) Depends on Sociodemographic Factors, Health-related Quality of Life, Disease Status and Computer Skills

Abstract

Introduction: Because of the often unfavorable prognosis, particularly for patients with metastases, health-related quality of life is extremely important for breast cancer patients. In recent years, data on patient-relevant endpoints is being increasingly collected electronically; however, knowledge on the acceptance and practicability of, and barriers to, this form of data collection remains limited. Material and Methods: A questionnaire was completed by 96 patients to determine to what extent existing computer skills, disease status, health-related quality of life and sociodemographic factors affect patients? potential willingness to use electronics methods of data collection (ePRO). Results: 52 of 96 (55?%) patients reported a priori that they could envisage using ePRO. Patients who a priori preferred a paper-based survey (pPRO) tended to be older (ePRO 53 years vs. pPRO 62 years; p?=?0.0014) and typically had lower levels of education (p?=?0.0002), were in poorer health (p?=?0.0327) and had fewer computer skills (p?=?0.0003). Conclusion: Barriers to the prospective use of ePRO were identified in older patients and patients with a lower quality of life. Given the appropriate conditions with regard to age, education and current health status, opportunities to participate should be provided to encourage patients? willingness to take part and ensure the validity of survey results. Focusing on ease of use of ePRO applications and making applications more patient-oriented and straightforward appears to be the way forward.

An Electronic Patient-Reported Outcome Tool for the FACT-B (Functional Assessment of Cancer Therapy-Breast) Questionnaire for Measuring the Health-Related Quality of Life in Patients With Breast Cancer: Reliability Study (Preprint)

“…Since systematic palliative treatment has only limited effect on survival rates, the concept of Healthrelated Quality of Life (HRQoL) and measurement of Patient-Reported Outcomes (PRO) is gaining more and more importance in the therapy setting of progressive diseases such as breast cancer, especially in the adjuvant or metastatic setting [6][7][8][9][10]. Cancer patients often suffer from symptoms and adverse events during their treatment, which are sometimes underestimated in clinical routine [11][12][13].…”

“…Although paperbased surveys of PRO still predominate because there are only a few reliable and validated ePRO questionnaires, numerous projects have evaluated feasibility and acceptance of HRQoL in ePRO measurement in the last few years [29][30][31][32][33][34]. Nevertheless, knowledge regarding patient acceptance, feasibility, and barriers remains limited [35], especially since hurdles might exist in relation to health status, technical skills, and socioeconomic aspects, which could influence both patients´ willingness to use ePRO and their response behavior [10,36,37]. Although studies have already demonstrated a potential equivalence between some paper-based PRO and ePRO, reliability of ePRO questionnaires should be verified so as not to endanger the validity of ePRO surveys [10,[36][37][38][39][40].…”

“…Nevertheless, knowledge regarding patient acceptance, feasibility, and barriers remains limited [35], especially since hurdles might exist in relation to health status, technical skills, and socioeconomic aspects, which could influence both patients´ willingness to use ePRO and their response behavior [10,36,37]. Although studies have already demonstrated a potential equivalence between some paper-based PRO and ePRO, reliability of ePRO questionnaires should be verified so as not to endanger the validity of ePRO surveys [10,[36][37][38][39][40]. Indeed, ePRO tools of the FACT-B questionnaire with proven reliability are missing so far.…”

“…Thus, a corresponding analysis in relation to differences and correlations between the paper-based vision of FACT-B and newly developed online tools are of great importance. It can be assumed that many aspects (i.e., sociodemographic aspects, technical skills, health condition, and perhaps design specifics of the ePRO tool) may influence both patients' willingness to use the tool and their response behavior, which underlines the need for reliability analyses [10,24,[35][36][37]. However, almost no scientific studies have dealt with the reliability of ePRO questionnaires.…”

“…It also needs to be noted that there was possibly a selection bias, as we did not examine whether the HRQoL was lower and the psychological distress was higher in those patients who could not be motivated to participate in the study. Therefore, it cannot be claimed with certainty that the tool per se is reliable for all metastatic and adjuvant breast cancer patients; further studies are needed here which focus on the willingness to use ePRO depending on the state of health [10].…”