A randomised online experimental study to compare responses to brief and extended surveys of health-related quality of life and psychosocial outcomes among women with breast cancer

Ettridge, Kerry; Caruso, Joanna; Roder, David; Prichard, Ivanka; Scharling-Gamba, Katrine; Wright, Kathleen M.; Miller, Caroline

doi:10.1007/s11136-020-02651-x

Cited by 6 publications

(10 citation statements)

References 76 publications

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“…It was also recommended that the formulation of these objectives and subsequent selection of measures should consider patients’ physical and mental capacity and potential respondent burden 20 , 21 . The collection of PRO data for trials as well as routine care should be evidence-informed to ensure that the data collection justifies the burden and potential risks 22 , 23 .…”

Section: Rationale For Pro Assessmentmentioning

confidence: 99%

“…However, trialists and clinical teams need to be careful as the utilisation of multiple PROMs will increase the time required to provide PRO data and may lead to an increase in patient burden 22 , 32 , 33 . Therefore, it is important that trialists and clinical teams carefully balance the quantity and quality of data desired, PROM coverage/comprehensiveness and precision against the time requirement and potential respondent burden (including anxiety caused, and fatigue) 23 , 34 , 35 . This is important as any increase in patient burden may lead to low compliance, and issues with the integrity and validity of data 22 .…”

Section: Measure Selectionmentioning

confidence: 99%

“…Historically, PROs have relied on long questionnaires which may be more precise but more time-consuming for patients, which are potentially burdensome and may affect compliance 11 , 23 , 36 , 37 . For instance, the original Kidney Disease Quality of Life (KDQOL) questionnaire has 134 items.…”

Section: Measure Selectionmentioning

confidence: 99%

“…Bragstad et al also highlighted that one challenge with using different short versions of a measure may be the difficulty of comparing the scores of the various versions with each other 41 . Finally, it was noted that while brevity should be a consideration, it should not outweigh the need to assess outcomes that participants consider important 23 .…”

Section: Measure Selectionmentioning

confidence: 99%

“…Patient's health status and functional disability should be considered during the PROM selection process to ensure that length and content are tailored to limit response burden 44,45 . Several studies focused on the development of short forms of existing measures and found that this enhanced the feasibility of collecting PROs on a regular basis and potentially could reduce respondent burden 23,36,41,[46][47][48][49][50][51][52][53][54][55] . The use of statistical methods such as factor analysis and Rasch can assist with item reduction during the validation of PROMs.…”

Section: Questionnaire Characteristicsmentioning

confidence: 99%

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Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection

et al. 2022

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Patient-reported outcomes (PROs) are used in clinical trials to provide evidence of the benefits and risks of interventions from a patient perspective and to inform regulatory decisions and health policy. The collection of PROs in routine practice can facilitate monitoring of patient symptoms; identification of unmet needs; prioritisation and/or tailoring of treatment to the needs of individual patients and inform value-based healthcare initiatives. However, respondent burden needs to be carefully considered and addressed to avoid high rates of missing data and poor reporting of PRO results, which may lead to poor quality data for regulatory decision making and/or clinical care.

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Section: Rationale For Pro Assessmentmentioning

confidence: 99%

Section: Measure Selectionmentioning

confidence: 99%

Section: Measure Selectionmentioning

confidence: 99%

Section: Measure Selectionmentioning

confidence: 99%

Section: Questionnaire Characteristicsmentioning

confidence: 99%

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Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection

et al. 2022

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Methods to increase response to postal and electronic questionnaires

Edwards,

Roberts,

Clarke

et al. 2023

Cochrane Database of Systematic Reviews

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Background Self‐administered questionnaires are widely used to collect data in epidemiological research, but non‐response reduces the effective sample size and can introduce bias. Finding ways to increase response to postal and electronic questionnaires would improve the quality of epidemiological research. Objectives To identify effective strategies to increase response to postal and electronic questionnaires. Search methods We searched 14 electronic databases up to December 2021 and manually searched the reference lists of relevant trials and reviews. We contacted the authors of all trials or reviews to ask about unpublished trials; where necessary, we also contacted authors to confirm the methods of allocation used and to clarify results presented. Selection criteria Randomised trials of methods to increase response to postal or electronic questionnaires. We assessed the eligibility of each trial using pre‐defined criteria. Data collection and analysis We extracted data on the trial participants, the intervention, the number randomised to intervention and comparison groups and allocation concealment. For each strategy, we estimated pooled odds ratios (OR) and 95% confidence intervals (CI) in a random‐effects model. We assessed evidence for selection bias using Egger's weighted regression method and Begg's rank correlation test and funnel plot. We assessed heterogeneity amongst trial odds ratios using a Chi 2 test and quantified the degree of inconsistency between trial results using the I 2 statistic. Main results Postal We found 670 eligible trials that evaluated over 100 different strategies of increasing response to postal questionnaires. We found substantial heterogeneity amongst trial results in half of the strategies. The odds of response almost doubled when: using monetary incentives (odds ratio (OR) 1.86; 95% confidence interval (CI) 1.73 to 1.99; heterogeneity I 2 = 85%); using a telephone reminder (OR 1.96; 95% CI 1.03 to 3.74); and when clinical outcome questions were placed last (OR 2.05; 95% CI 1.00 to 4.24). The odds of response increased by about half when: using a shorter questionnaire (OR 1.58; 95% CI 1.40 to 1.78); contacting participants before sending questionnaires (OR 1.36; 95% CI 1.23 to 1.51; I 2 = 87%); incentives were given with questionnaires (i.e. unconditional) rather than when given only after participants had returned their questionnaire (i.e. conditional on response) (OR 1.53; 95% CI 1.35 to 1.74); using personalised SMS reminders (OR 1.53; 95% CI 0.97 to 2.42); using a special (recorded) delivery service (OR 1.68; 95% CI 1.36 to 2.08; I 2 = 87%); using electronic reminders (OR 1.60; 95% CI 1.10 to 2.33); using intensive follo...

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Administering selected subscales of patient-reported outcome questionnaires to reduce patient burden and increase relevance: a position statement on a modular approach

Serrano,

Cella,

Husereau

et al. 2024

Qual Life Res

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Patient-reported outcome (PRO) questionnaires considered in this paper contain multiple subscales, although not all subscales are equally relevant for administration in all target patient populations. A group of measurement experts, developers, license holders, and other scientific-, regulatory-, payer-, and patient-focused stakeholders participated in a panel to discuss the benefits and challenges of a modular approach, defined here as administering a subset of subscales out of a multi-scaled PRO measure. This paper supports the position that it is acceptable, and sometimes preferable, to take a modular approach when administering PRO questionnaires, provided that certain conditions have been met and a rigorous selection process performed. Based on the experiences and perspectives of all stakeholders, using a modular approach can reduce patient burden and increase the relevancy of the items administered, and thereby improve measurement precision and eliminate wasted data without sacrificing the scientific validity and utility of the instrument. The panelists agreed that implementing a modular approach is not expected to have a meaningful impact on item responses, subscale scores, variability, reliability, validity, and effect size estimates; however, collecting additional evidence for the impact of context may be desirable. It is also important to recognize that adequate rationale and evidence (e.g., of fit-for-purpose status and relevance to patients) and a robust consensus process that includes patient perspectives are required to inform selection of subscales, as in any other measurement circumstance, is expected. We believe that the considerations discussed within (content validity, administration context, and psychometric factors) are relevant across multiple therapeutic areas.

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A randomised online experimental study to compare responses to brief and extended surveys of health-related quality of life and psychosocial outcomes among women with breast cancer

Cited by 6 publications

References 76 publications

Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection

Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection

Methods to increase response to postal and electronic questionnaires

Administering selected subscales of patient-reported outcome questionnaires to reduce patient burden and increase relevance: a position statement on a modular approach

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