Conversion of standard retrospective patient-reported outcomes to momentary versions: cognitive interviewing reveals varying degrees of momentary compatibility

Boesen, Victor Brun; Nissen, Stine Birk; Grøenvold, Mogens; Bjørner, Jakob Bue; Bonnema, Steen Joop; Rasmussen, Åse Krogh; Feldt‐Rasmussen, Ulla; Watt, Torquil

doi:10.1007/s11136-017-1762-7

Cited by 10 publications

(9 citation statements)

References 27 publications

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“…These residual symptoms, including rapid mood changes, depression (fatigue, tearfulness, disturbed sleep, and loss of appetite), and anxiety (concentration problems, mental alertness, and irritability) ( Bauer et al, 2001 ; Grabe et al, 2005 ; Bell et al, 2007 ; Samuels, 2008 ; Bathla et al, 2016 ; Rieben et al, 2016 ), may overlap with typical symptoms of psychosomatic disorders ( Moncayo and Moncayo, 2014 ). As a result, HRQoL can be further reduced ( Nexo et al, 2014 ; Boesen et al, 2018a , b ). The relevance of these psychological residual symptoms has been highlighted also in patients with Hashimoto’s thyroiditis (HT) ( Watt et al, 2012 ; Moncayo and Moncayo, 2014 ; Montagna et al, 2016 ), which is the most common autoimmune thyroid disease and the most common cause of thyroid failure, with hypothyroidism occurring in approximately half of patients with HT ( Benvenga and Trimarchi, 2008 ).…”

Section: Introductionmentioning

confidence: 99%

Alexithymia, Emotional Distress, and Perceived Quality of Life in Patients With Hashimoto’s Thyroiditis

et al. 2021

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Emotion-processing impairment represents a risk factor for the development of somatic illness, affecting negatively both health-related quality of life (HRQoL) and disease management in several chronic diseases. The present pilot study aims at (i) investigating the associations between alexithymia and depression, anxiety, and HRQoL in patients with Hashimoto’s thyroiditis (HT); (ii) examining the association between these three psychological conditions together with HRQoL, and thyroid autoantibodies status as well as thyroid echotexture in patients with HT; and (iii) comparing the intensity of all these clinical psychological features in patients with HT versus controls. Twenty-one patients with serologically or ultrasonographically verified HT and 16 controls with non-toxic goiter or postsurgical hypothyroidism were recruited for this study. Serum thyrotropin (TSH) and free thyroxine, as well as thyroid autoantibodies (thyroglobulin antibodies and thyroid peroxidase antibodies), were assayed. Alexithymia, depression, anxiety, and HRQoL were assessed with Toronto Alexithymia Scale; Beck Depression Inventory, second edition; Hamilton Anxiety Rating Scale; and Health Survey Short-Form 36, respectively. A negative relationship between the difficulty to describe feelings and the cognitive component of depression was found (r = -0.46, p = 0.04). Besides, patients with seronegative HT had lower somatic anxiety than patients with HT who tested positive (r = -0.68, p = 0.01 and r = -0.59, p = 0.04, respectively). Besides, no statistically significant difference was found between patients with HT and controls with regard to somatic anxiety. The present study suggests the relevance of alexithymia in patients suffering from HT, which may be intertwined with a possible state of underreported depression that is mainly expressed through physical complaints. Promoting the capability to describe and communicate feelings could contribute to psychological elaboration and coping with the disease and, consequently, to the improvement of self-management and perceived HRQoL.

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Section: Introductionmentioning

confidence: 99%

Alexithymia, Emotional Distress, and Perceived Quality of Life in Patients With Hashimoto’s Thyroiditis

et al. 2021

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“…In this section we consider how participants interpret the content presented in EMA questions and, particularly, if they are interpreting them as we expect them to. EMA questions are rarely developed using rigorous and systematic pilot testing of content validity, such as focus groups and cognitive interviews to evaluate how they are understood by respondents-a point emphasized in a review on EMA in physical activity studies (Degroote et al 2020) (for an exception, see Boesen et al 2018). Instead, questions employed in EMA protocols are often created based on their face validity in the eyes of the investigators, or they are derived and modified from questionnaires that encompass much longer time frames (Boesen et al 2018, Degroote et al 2020.…”

Section: How Do Respondents Interpret the Content Of Ema Questions?mentioning

confidence: 99%

Evaluation of Pressing Issues in Ecological Momentary Assessment

Stone

Schneider

Smyth

2023

Annual Review of Clinical Psychology

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The use of repeated, momentary, real-world assessment methods known as the Experience Sampling Method and Ecological Momentary Assessment (EMA) has been broadly embraced over the last few decades. These methods have extended our assessment reach beyond lengthy retrospective self-reports as they can capture everyday experiences in their immediate context, including affect, behavior, symptoms, and cognitions. In this review we evaluate nine conceptual, methodological, and psychometric issues about EMA with the goal of stimulating conversation and guiding future research on these matters: the extent to which participants are actually reporting momentary experiences, respondents’ interpretation of momentary questions, the use of comparison standards in responding, efforts to increase the EMA reporting period beyond the moment to longer periods within a day, training of EMA study participants, concerns about selection bias of respondents, the impact of missing EMA assessments, the reliability of momentary data, and for which purposes EMA might be considered a gold standard for assessment. Resolution of these issues should have far-reaching implications for advancing the field. Expected final online publication date for the Annual Review of Clinical Psychology, Volume 19 is May 2023. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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“…In general, PROs are retrospective surveys, often with a recall period of one to four weeks. By ecological momentary assessments (EMAs) - an advancing method in the science of PROs - the current QoL is measured with repeated real-time assessments ( 70 , 71 ). Typically, patients are notified several times daily to complete a very brief survey on their cell phone (see Figure 3 ).…”

Section: Perspectives and Future Directionsmentioning

confidence: 99%

“…An EMA version of ThyPRO has recently been developed and applied in a few studies ( 71 – 74 ). The concept of EMA has the potential to increase our understanding of the impact of thyroid diseases and their treatment on QoL.…”

Section: Perspectives and Future Directionsmentioning

confidence: 99%

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Implementation of thyroid-related patient-reported outcomes in routine clinical practice

et al. 2022

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Patient-reported outcomes (PROs) are increasingly used in clinical practice to improve clinical care. Multiple studies show that systematic use of PROs can enhance communication with patients and improve patient satisfaction, symptom management and quality of life. Further, such data can be aggregated to examine health levels for patient groups, improve quality of care, and compare patient outcomes at the institutional, regional or national level. However, there are barriers and challenges that should be handled appropriately to achieve successful implementation of PROs in routine clinical practice. This paper briefly overviews thyroid-related PROs, describes unsolved quality of life issues in benign thyroid diseases, provides examples of routine collection of PROs, and summarizes key points facilitating successful implementation of thyroid-related PROs in routine clinical practice. Finally, the paper touches upon future directions of PRO research.

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Conversion of standard retrospective patient-reported outcomes to momentary versions: cognitive interviewing reveals varying degrees of momentary compatibility

Cited by 10 publications

References 27 publications

Alexithymia, Emotional Distress, and Perceived Quality of Life in Patients With Hashimoto’s Thyroiditis

Alexithymia, Emotional Distress, and Perceived Quality of Life in Patients With Hashimoto’s Thyroiditis

Evaluation of Pressing Issues in Ecological Momentary Assessment

Implementation of thyroid-related patient-reported outcomes in routine clinical practice

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