Electronic patient-reported outcomes monitoring during lung cancer chemotherapy: A nested cohort within the PRO-TECT pragmatic trial (AFT-39)

Objectives: Patients with lung cancer have high symptom burden and diminished quality of life. Electronic patient-reported outcome (PRO) platforms deliver repeated longitudinal surveys via web or telephone to patients and alert clinicians about concerning symptoms. This study aims to determine feasibility of electronic PRO monitoring in lung cancer patients receiving treatment in community settings. Methods: Adults receiving treatment for advanced or metastatic lung cancer at 26 community sites were invited to participate in a prospective trial of weekly electronic PRO symptom monitoring for 12 months (NCT03249090). Surveys assessing patients’ satisfaction with the electronic PRO system were administered at 3 months. Descriptive statistics were generated for demographics, survey completion rates, symptom occurrence, and provider PRO alert management approaches. Pairwise relationships between symptom items were evaluated using intra-individual repeated-measures correlation coefficients. Results: Lung cancer patients (n = 118) participating in electronic PROs were older (mean 64.4 vs 61.9 years, p = 0.03), had worse performance status (p = 0.002), more comorbidities (p = 0.02), and less technology experience than patients with other cancers. Of delivered weekly PRO surveys over 12 months, 91% were completed. Nearly all (97%) patients reported concerning (i.e., severe or worsening) symptoms during participation, with 33% of surveys including concerning symptoms. Pain was the most frequent and longest lasting symptom and was associated with reduced activity level. More than half of alerts to clinicians for concerning symptoms led to intervention. The majority (87%) would recommend using electronic PRO monitoring to other lung cancer patients. Conclusions: Remote longitudinal weekly monitoring of patients with lung cancer using validated electronic PRO surveys was feasible in a multicenter, community-based pragmatic study. A high symptom burden specific to lung cancer was detected and clinician outreach in response to alerts was frequent, suggesting electronic PROs may be a beneficial strategy for identifying actionable symptoms and allow opportunities to optimize well-being in this population

Using classification and regression tree modelling to investigate response shift patterns in dentine hypersensitivity

BACKGROUND: Dentine hypersensitivity (DH) affects people's quality of life (QoL). However changes in the internal meaning of QoL, known as Response shift (RS) may undermine longitudinal assessment of QoL. This study aimed to describe patterns of RS in people with DH using Classification and Regression Trees (CRT) and to explore the convergent validity of CRT with the then-test and ideals approaches. METHODS: Data from an 8-week clinical trial of mouthwashes for dentine hypersensitivity (n = 75) using the Dentine Hypersensitivity Experience Questionnaire (DHEQ) as the outcome measure, were analysed. CRT was used to examine 8-week changes in DHEQ total score as a dependent variable with clinical status for DH and each DHEQ subscale score (restrictions, coping, social, emotional and identity) as independent variables. Recalibration was inferred when the clinical change was not consistent with the DHEQ change score using a minimally important difference for DHEQ of 22 points. Reprioritization was inferred by changes in the relative importance of each subscale to the model over time. RESULTS: Overall, 50.7% of participants experienced a clinical improvement in their DH after treatment and 22.7% experienced an important improvement in their quality of life. Thirty-six per cent shifted their internal standards downward and 14.7% upwards, suggesting recalibration. Reprioritization occurred over time among the social and emotional impacts of DH. CONCLUSIONS: CRT was a useful method to reveal both, the types and nature of RS in people with a mild health condition and demonstrated convergent validity with design based approaches to detect RS

Using structural equation modeling to detect response shift in performance and health-related quality of life scores of multiple sclerosis patients

To illustrate how structural equation modeling (SEM) can be used for response shift detection with random measurement occasions and health state operationalized as fixed group membership (Study 1) or with fixed measurement occasions and health state operationalized as time-varying covariates (Study 2). In Study 1, we explored seven items of the Performance Scales measuring physical and mental aspects of perceived disability of 771 stable, 629 progressive, and 1,552 relapsing MS patients. Time lags between the three measurements varied and were accounted for by introducing time since diagnosis as an exogenous variable. In Study 2, we considered the SF-12 scales measuring physical and mental components of HRQoL of 1,767 patients. Health state was accounted for by exogenous variables relapse (yes/no) and symptoms (worse/same/better). In Study 1, progressive and relapsing patients reported greater disability than stable patients but little longitudinal change. Some response shift was found with stable and relapsing patients. In Study 2, relapse and symptoms were associated with HRQoL, but no change and only little response shift was found. While small response shifts were found, they had little impact on the evaluation of true change in performance and HRQoL. © 2011 The Author(s)

Erratum: Using structural equation modeling to detect response shift in performance and health-related quality of life scores of multiple sclerosis patients (Quality of Life Research DOI: 10.1007/s11136-010-9844-9)

Erratum: Using structural equation modeling to detect response shift in performance and health-related quality of life scores of multiple sclerosis patients (Quality of Life Research DOI: 10.1007/s11136-010-9844-9

Assessing cancer patients' trust in their oncologist: development and validation of the Trust in Oncologist Scale (TiOS)

PURPOSE: The aim of this study was to develop and validate the Trust in Oncologist Scale (TiOS), which aims to measure cancer patients' trust in their oncologist. Structure, reliability and validity were examined. METHODS: Construction of the TiOS was based on a multidimensional theoretical framework. Cancer patients were surveyed within a week after their consultation. Trust, satisfaction, trust in health care, self-reported health and background variables were assessed. Dimensionality, internal consistency, test–retest reliability and construct validity were investigated. RESULTS: Data of 423 patients were included (response rate = 65%). After item reduction, the TiOS included 18 items. Trust scores were high. Exploratory factor analysis suggested one-dimensionality. Confirmatory factor analysis nevertheless indicated a reasonable fit of our four-dimensional theoretical model, distinguishing competence, fidelity, honesty and caring. Internal consistency and test–retest reliabilities were high. Good construct validity was indicated by moderate correlations of trust (TiOS) with satisfaction, trust in health care, willingness to recommend and number of consultations with the oncologist. Exploratory analyses suggested significant correlations of trust with ethnicity and age. CONCLUSIONS: The TiOS reliably and validly assesses cancer patients' trust in their oncologist. The questionnaire can be employed in both clinical practice and future research of cancer patients' trust