Patient-reported outcomes (PROs) in lung cancer: Experiences from a nationwide feasibility study

Abstract

Our objectives were to examine the feasibility of a nationwide collection of patient-reported outcomes (PROs) in a lung cancer population as well as in various sub-populations, and to describe the characteristics of responders compared to non-responders. Materials and Methods All patients diagnosed with lung cancer in Denmark are registered in the Danish Lung Cancer Registry (DLCR). The 7,295 patients registered in DLCR from 1 October 2013 until 30 September 2015 who had received treatment were eligible. Using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-LC13 questionnaires, we employed two different methods of delivery, resulting in two different project parts. In project part 1, the baseline

Sociodemographic, personal, and disease-related determinants of referral to patient-reported outcome-based follow-up of remote outpatients: a prospective cohort study

“…We found that lower sociodemographic status was associated with a decreased probability of referral to PRO-based follow-up. This finding is supported by studies regarding questionnaire non-response [8,9]. A Danish study among patients with endometrial cancer found that welleducated patients more often sought medical attendance if symptoms of recurrence occurred than did less educated patients [44].…”

“…Age, gender, cohabitation status, education, and co-morbidity were included in the adjusted analyses. The confounder variables were selected a priori based on associations between these factors and questionnaire non-response in previous studies [8][9][10][11][12][13].…”

“…We have not been able to identify other PRO systems that use PRO measures as the basis for follow-up of outpatients with epilepsy or in any other outpatient population, nor studies that have investigated factors associated with patients who participate in PRO-based follow-up. However, studies regarding non-response to questionnaires have found that factors associated with non-response were lower socioeconomic status [8,9], male sex [8,10,11], younger age [9,10,12], not living with a partner [8,10,13], different ethnic background than Danish [10,12], and poorer health or quality of life [8,9]. It is therefore important that the clinicians consider these and similar aspects when deciding whether to refer a patient to PRO-based follow-up.…”

How representative are colorectal, lung, breast and prostate cancer patients responding to the National Cancer Patient Experience Survey (CPES) of the cancer registry population in England? A population-based case control study

“…Although population-based health experience surveys provide a valuable patient perspective on many aspects of health services, they are prone to selection biases18–20 that might result from missing the experiences of ethnic minorities, people living in the more deprived areas and the youngest and oldest age groups. In addition, there has been a concern that patients with the poorest prognosis are missed, because they are too ill or die before they can complete the survey 20 21. Analysis of early cancer experience surveys in England in 2000 and 2004, for example, showed limited inclusion of lung cancer patients,10 and analysis of CPES data for 2010 raised a concern about the number of patients in the initial sampling frame for some cancer types who died before they could receive they survey 20 21…”

“…In addition, there has been a concern that patients with the poorest prognosis are missed, because they are too ill or die before they can complete the survey 20 21. Analysis of early cancer experience surveys in England in 2000 and 2004, for example, showed limited inclusion of lung cancer patients,10 and analysis of CPES data for 2010 raised a concern about the number of patients in the initial sampling frame for some cancer types who died before they could receive they survey 20 21…”