Use of Ecological Momentary Assessment to Measure Dyspnea in COPD.

Dyspnea is an unpredictable and distressing symptom of chronic obstructive pulmonary disease (COPD). Dyspnea is challenging to measure due to the heterogeneity of COPD and recall bias associated with retrospective reports. Ecological Momentary Assessment (EMA) is a technique used to collect symptoms in real-time within a natural environment, useful for monitoring symptom trends and risks of exacerbation in COPD. EMA can be integrated into mobile health (mHealth) platforms for repeated data collection and used alongside physiological measures and behavioral activity monitors. The purpose of this paper is to discuss the use of mHealth and EMA for dyspnea measurement, consider clinical implications of EMA in COPD management, and identify needs for future research in this area.

Sleep Quality Drives Next Day Pain and Fatigue in Adults With Inflammatory Bowel Disease: A Short Report.

BACKGROUND AND AIMS: Poor sleep is prevalent in inflammatory bowel disease [IBD] and is associated with increased symptom severity and decreased quality of life. To date, research is mostly cross-sectional, limiting the ability to examine the causal direction between sleep and IBD symptoms. This short report aims to assess the temporal associations among sleep quality, pain, fatigue, and physical activity in adults with IBD. METHODS: Adult IBD patients [N = 18] completed a structured electronic diary two times per day [morning and evening] over 14 consecutive days. Morning diary items assessed sleep [sleep quality, wake after sleep onset, number of awakenings] and evening diary items assessed daytime IBD symptoms [abdominal pain, fatigue]. An actigraph measured daily step count [physical activity]. Generalised estimating equation models evaluated the lagged temporal associations between sleep ratings and next day pain, fatigue, and physical activity as well as reverse lagged temporal associations between daytime symptoms and physical activity and subsequent sleep ratings. RESULTS: Poor self-reported sleep quality predicted increased next day abdominal pain and fatigue scores. Increased time awake during the night predicted decreased next day physical activity. In the reverse analyses, only the relationship between daytime abdominal pain and wake after sleep onset was significant. CONCLUSIONS: Poor sleep appears to drive IBD-related outcomes, such as pain and fatigue. These findings are a first step in demonstrating the key role of sleep in the IBD patient experience, potentially resulting in a treatment target for intervention. Future research is needed to confirm results in a larger sample.

The new measures of interoceptive accuracy: A systematic review and assessment.

Conscious interoception, the perception of internal bodily states, is thought to contribute to fundamental human abilities (e.g., decision-making and emotional regulation). One of its most studied dimensions is interoceptive accuracy: the objective capacity to detect internal bodily signals. In the past few years, several labs across the world have started developing new tasks aimed at overcoming limitations inherent in classical measures of interoceptive accuracy. In this systematic review, we identified these tasks (since 2015) for the cardiac, respiratory, and gastrointestinal domains. For each identified task, we discuss their strengths and weaknesses, and make constructive suggestions for further improvement. In the general discussion, we discuss the (potentially elusive) possibility of reaching high validity in the measurement of interoceptive accuracy. We also point out that interoceptive accuracy may not be the most critical dimension for informing current theories, and we encourage researchers to investigate other dimensions of conscious interoception.

'It just doesn't feel right' and other reasons why some people fear and avoid positive emotions.

The need to further our understanding of positive affect dysregulation in depression has been widely acknowledged. Two related relevant concepts in this realm, are Avoidance Of Positivity (AOP; referring to avoidance behaviour towards positivity) and Fear Of Positivity (FOP; referring to anxious or unpleasant feelings related to positivity). However, traditionally manifestations of AOP and FOP are considered in isolation, and self-report scales used to measure both concepts show considerable content overlap. Therefore, the first study aim was to examine how AOP and FOP relate to one another, depressive symptomatology and anhedonia, through new clearly delineated scales. For exploratory purposes, general and state-specific versions were developed. The second aim was to uncover beliefs that underlie the tendency towards AOP/FOP. An adult community sample (n = 197) completed online measures of AOP, FOP, depressive symptoms and anhedonia, and answered open-ended questions about reasons for AOP and FOP. Cross-sectionally, preliminary evidence was found for AOP and FOP being positively associated with one another, depressive symptomatology and anhedonia. Even after controlling for depressive symptomatology, anhedonia remained positively associated with AOP and FOP. So, AOP and FOP may be viable candidate mechanisms maintaining anhedonia that are worth further investigation and may be appropriate to target during treatment. Answers to the open-ended questions (n = 77) reflected various beliefs underlying AOP/FOP, which were broader than simply anticipating negative consequences of feeling positive and also touched on themes of unworthiness and social inappropriateness of feeling positive. Some theoretical and clinical implications of different beliefs underlying AOP/FOP are discussed.

A novel self-report scale of interoception: the three-domain interoceptive sensations questionnaire (THISQ).

OBJECTIVES: The self-reported perception of bodily sensations is assumed predictive for health and disease. Existing questionnaires mostly focus on aversive sensations, and associated emotions and cognitions, which potentially confounds associations between interoception and illness. Therefore, we developed the Three-domain Interoceptive Sensations Questionnaire (THISQ), assessing self-reported perception of neutral respiratory, cardiac, and gastroesophageal sensations. DESIGN: Using cross-sectional surveys, we developed and validated the THISQ. MAIN OUTCOME MEASURES: In Sample 1 (n = 357), a pool of 28 Dutch items was subjected to exploratory factor analysis. Eighteen items with a primary factor loading >.40 were retained for confirmatory factor analysis in Sample 2 (n = 374) and Sample 3 (n = 484) for the validation of the Dutch and English questionnaire, respectively. RESULTS: Analyses supported the 3-factor solution: cardiorespiratory activation, cardiorespiratory deactivation, and gastroesophageal sensations. Scales showed acceptable to good internal consistency. Convergent validity was confirmed by significant medium associations between THISQ scores and other self-report measures of interoception. Divergent validity was supported by non-significant or small associations with measures of negative affectivity and symptom-related anxiety. CONCLUSION: Our findings suggest that the Dutch and English THISQs are valid and reliable self-report measures of interoception, which could advance our understanding of interoceptive processes in health and disease.Supplemental data for this article is available online at https://doi.org/10.1080/08870446.2021.2009479 .

Smartphone-based Ecological Momentary Assessment to study "scanxiety" among Adolescent and Young Adult survivors of childhood cancer: A feasibility study.

OBJECTIVE: Scan-related anxiety ("scanxiety") refers to the fear, stress, and anxiety in anticipation of tests and scans in follow-up cancer care. This study assessed the feasibility of Ecological Momentary Assessment (EMA) for real-world, real-time capture of scanxiety using patients' personal smartphone. METHODS: Adolescent and Young Adult survivors of childhood cancer were prompted to complete EMA surveys on a smartphone app three times per day for 11 days (33 surveys total) around their routine surveillance scans. Participants provided structured feedback on the EMA protocol. RESULTS: Thirty out of 46 contacted survivors (65%) enrolled, exceeding the preregistered feasibility cutoff of 55%. The survey completion rate (83%) greatly exceeded the preregistered feasibility cutoff of 65%. Participants generally found the smartphone app easy and enjoyable to use and reported low levels of distress from answering surveys. Participants reported significantly more daily fear of cancer recurrence (FCR) and negative affect in the days before compared to the days after surveillance scans, aligning with the expected trajectory of scanxiety. Participants who reported greater FCR and scanxiety using comprehensive measures at baseline also reported significantly more daily FCR around their surveillance scans, indicating validity of EMA items. Bodily threat monitoring was prospectively and concurrently associated with daily FCR, thus warranting further investigation as a risk factor for scanxiety. CONCLUSIONS: Findings indicate the feasibility, acceptability, and validity of EMA as a research tool to capture the dynamics and potential risk factors for scanxiety.

Vague quantifiers demonstrate little susceptibility to frame of reference effects.

Comparison standards that people use when responding to survey questions, also called Frames of Reference (FoRs), can influence the validity of self-report responses. The effects of FoRs might be the stronger for items using vague quantifier (VQ) scales, which are particularly prominent in quality of life research, compared with numeric responses. This study aims to investigate the impact of FoRs on self-report measures by examining how imposing a specific FoR in survey questions affects (a) the response levels of VQ and numeric scales and (b) the relationship between VQs and a quantitative responses to the same question. A sample of 1,869 respondents rated their education, commute and sleep duration, medication use, and level of physical activity using both VQ and numeric formats. Participants were asked to compare themselves with the average US adult, with their friends who are about their age, or did not receive specific instructions regarding a reference for comparison. We found that FoR conditions did not influence the numeric responses. Among the VQ responses, only education attainment was affected by FoR. The association between the numeric responses and vague quantifiers was comparable across different FoR conditions. Our results showed that manipulating the use of interpersonal FoRs had limited effect on the responses, which suggests that at least some comparisons do not have a strong biasing effect on self-report measures. However, future research should confirm this finding for using other FoRs (e.g., historical or hypothetical comparisons) and other outcome measures.

The Interoceptive Sensitivity and Attention Questionnaire: Evaluating Aspects of Self-Reported Interoception in Patients With Persistent Somatic Symptoms, Stress-Related Syndromes, and Healthy Controls.

OBJECTIVE: This study aimed to validate the Interoceptive Sensitivity and Attention Questionnaire (ISAQ), a 17-item self-report measure assessing sensitivity and attention to interoceptive signals. METHODS: In study 1, exploratory and confirmatory factor analysis was performed in a student convenience sample (n = 1868). In study 2, ISAQ data of a healthy sample (n = 144) and various patient groups experiencing stress-related syndromes (overstrain, n = 63; burnout, n = 37; panic disorder [PD]. n = 60) and/or persistent somatic symptoms in daily life (irritable bowel syndrome, n = 38; fibromyalgia and/or chronic fatigue syndrome, n = 151; medically unexplained dyspnea [MUD], n = 29) were compared. RESULTS: Three subscales were revealed: (F1) sensitivity to neutral bodily sensations, (F2) attention to unpleasant bodily sensations, and (F3) difficulty disengaging from unpleasant bodily sensations. Overall, patients with fibromyalgia and/or chronic fatigue syndrome and patients with MUD scored significantly higher on F1 (p = .009 and p = .027, respectively) and F2 (p = .002 and p < .001, respectively) than healthy controls. Patients with PD had higher scores on subscales F2 (p < .001) and F3 (p < .001) compared with healthy controls, as well as higher scores on F2 compared with all other patient groups (pPD versus MUD = .008; all other p values < .001). CONCLUSIONS: Interoceptive sensibility-the self-reported aspect of interoception-is not a homogeneous or unitary construct. The subscales of the ISAQ differentiate healthy controls from patients with persistent somatic and/or stress-related complaints in daily life and distinguish different patient groups. The ISAQ can be used as a concise, reliable, and clinically relevant research tool to further disentangle adaptive and maladaptive aspects of interoceptive ability.

Inflammatory Bowel Disease-related Behaviours [IBD-Bx] Questionnaire: Development, Validation and Prospective Associations with Fatigue.

BACKGROUND AND AIMS: Disease-related behaviours that may maintain or worsen symptom burden remain largely unexplored in inflammatory bowel disease [IBD]. In this study, we developed and validated an instrument assessing IBD-related, modifiable behaviours and explored which behaviours prospectively correlate with fatigue, a debilitating and common symptom in IBD. METHODS: Initially, 72 items reflecting IBD-related behaviours were generated based on literature review and input from clinicians and people diagnosed with IBD. During wave 1, 495 IBD patients rated to what extent each behaviour was applicable to them. Additionally, disease activity, fatigue, IBD-related concerns and psychological variables were assessed. During a follow-up visit 4-12 weeks later [wave 2], a random selection of 92 patients from wave 1 completed the measures assessing the IBD-related behaviours, disease activity and fatigue once more. RESULTS: A principal component analysis with oblique rotation revealed seven components in the 72 IBD behaviours, which could be interpreted as: [1] Avoiding food and activities, [2] Access to toilets, [3] Avoidance of sex, [4] Cognitive avoidance, [5] Not sharing with others, [6] Alternative treatments and [7] Disease management. Each component was reduced to three to five representative items, resulting in a final, 25-item IBD-Bx questionnaire showing good concurrent validity [alphas > 0.63] and reliability. Almost all components were cross-sectionally related to levels of fatigue. Avoiding food and activities and Access to toilets significantly predicted fatigue at wave 2 when controlling for baseline fatigue. CONCLUSIONS: The IBD-Bx is a valid and reliable questionnaire of IBD-related behaviours, some of which predict future fatigue burden.

Worries and concerns of inflammatory bowel disease (IBD) patients in Belgium - a validation of the Dutch rating form.

OBJECTIVES: Worry is the most common psychological complaint among patients with Inflammatory Bowel Disease (IBD). This study aimed to translate and test the psychometric properties the Rating Form of IBD Patient Concerns (RFIPC) among Dutch-speaking patients with IBD in Belgium. It also aimed to describe worries and concerns, and to examine possible differences in worry patterns between patients with different disease types and disease activities. METHODS: The RFIPC was translated into Dutch following the guidelines of the Rome Foundation and was completed by patients with Crohn's disease (CD, n = 336) and ulcerative colitis (UC, n = 160). To test concurrent validity, the Depression Anxiety Stress Scales (DASS-21) were used. Factor structure was examined with confirmatory factor analysis. RESULTS: The four-factor structure including subscales 'impact of the disease', 'sexual intimacy', 'complications of the disease' and 'body stigma' was confirmed in the Dutch sample. All factors had high internal consistency (>.70). Correlations with DASS-21 suggest good concurrent validity, all rs>.30, ps<.001. No differences in the RFIPC scores were observed between patients with CD and UC. Patients with active disease (53%) had higher scores than patients in remission (47%). Across all groups, the order of top concerns was consistent and included worries about energy level, side effects of medication, having an ostomy bag/surgery, and uncertain nature of the disease. CONCLUSIONS: The Dutch version of the RFIPC is a valid and reliable measure of IBD-specific worries and concerns which can be used in both research and clinical settings.

MTurk Participants Have Substantially Lower Evaluative Subjective Well-Being Than Other Survey Participants.

Amazon's MTurk platform has become a popular site for obtaining relatively inexpensive and convenient adult samples for use in behavioral research. Concerns have been raised about selection issues, because MTurk workers chose to participate in the platform and select the tasks they perform (of many offered to them). Prior studies have documented demographic and psychological differences with national samples. In this paper we studied evaluative subjective well-being (the Cantril Ladder) in an MTurk sample, a national Internet panel sample, and a national telephone survey conducted by Gallup-Sharecare. A surprising finding was that MTurk participants' Ladder scores were substantial lower than the other two samples. Analyses controlling for six demographic differences among the samples only slightly reduced the mean differences. However, patterns of demographic-well-being associations were similar within the samples. To corroborate these results, we conducted a secondary analysis on another three samples, one MTurk sample and two Internet panel samples. The same group differences in Ladder scores were observed. These findings add to the growing literature documenting the characteristics of MTurk samples and we discuss the implications for future research with such samples.

The effects of time frames on self-report.

BACKGROUND: The degree to which episodic and semantic memory processes contribute to retrospective self-reports have been shown to depend on the length of reporting period. Robinson and Clore (2002) argued that when the amount of accessible detail decreases due to longer reporting periods, an episodic retrieval strategy is abandoned in favor of a semantic retrieval strategy. The current study further examines this shift between retrieval strategies by conceptually replicating the model of Robinson and Clore (2002) for both emotions and symptoms and by attempting to estimate the exact moment of the theorized shift. METHOD: A sample of 469 adults reported the extent to which they experienced 8 states (excited, happy, calm, sad, anxious, angry, pain, stress) over 12 time frames (right now to in general). A series of curvilinear and piecewise linear multilevel growth models were used to examine the pattern of response times and response levels (i.e., rated intensity on a 1-5 scale) across the different time frames. RESULTS: Replicating previous results, both response times and response levels increased with longer time frames. In contrast to prior work, no consistent evidence was found for a change in response patterns that would suggest a shift in retrieval strategies (i.e., a flattening or decrease of the slope for longer time frames). The relationship between the time frames and response times/levels was similar for emotions and symptoms. CONCLUSIONS: Although the current study showed a pronounced effect of time frame on response times and response levels, it did not replicate prior work that suggested a shift from episodic to semantic memory as time frame duration increased. This indicates that even for longer time frames individuals might attempt to retrieve episodic information to provide a response. We suggest that studies relying on self-report should use the same well-defined time frames across all self-reported measures.

Retrospective memory for symptoms in patients with medically unexplained symptoms.

OBJECTIVE: Clinical assessment and diagnostic processes heavily rely on memory-based symptom reports. The current study investigated memory for symptoms and the peak-end effect for dyspnea in patients with medically unexplained symptoms and healthy participants. METHODS: Female patients with medically unexplained dyspnea (MUD) (n=22) and matched healthy controls (n=22) participated in two dyspnea induction trials (short, long). Dyspnea ratings were collected: (1) continuously during symptom induction (concurrent with respiratory measures), (2) immediately after the experiment, and (3) after 2weeks. Symptoms, negative affect, and anxiety were assessed at baseline and after every trial. The mediating role of state anxiety in symptom reporting was assessed. The peak-end effect was tested with forced-choice questions measuring relative preference for the trials. RESULTS: Compared to controls, dyspnea induction resulted in higher levels of symptoms, anxiety, concurrent dyspnea ratings, and minute ventilation in the patient group. In both groups, immediate retrospective ratings were higher than averaged concurrent ratings. No further increase in dyspnea ratings was observed at 2-week recall. Retrospective dyspnea ratings were mediated by both state anxiety and concurrent dyspnea ratings. Patients did not show a peak-end effect, whereas controls did. CONCLUSION: The findings show that patients' experience of a dyspneic episode is subject to immediate memory bias, but does not change over a longer time period. The results also highlight the importance of affective state during symptom experience for both symptom perception and memory.

Ways of encoding somatic information and their effects on retrospective symptom reporting.

OBJECTIVES: Retrospective symptom reports tend to overestimate actual symptom intensity. This study explored how focusing on sensory-perceptual or on affective-motivational aspects of a somatic experience influenced retrospective symptom reports in high and low habitual symptom reporters (HSR). We hypothesized that a focus on affective-motivational aspects of somatic episodes contributes to retrospective overestimation compared to a focus on sensory-perceptual aspects. DESIGN: Dyspnoea (rebreathing) and pain (cold pain) were induced during two experimental sessions in healthy women: 21 high and 24 low HSR, selected using cut-off scores on a symptom checklist. Within-subject manipulation of sensory and affective processing focus (PF) took place at the encoding phase before symptom induction. METHODS: Dyspnoea and pain ratings were collected immediately after the symptom inductions and after 2 weeks. Breathing behaviour was recorded during dyspnoea trials, while affective state and symptom measures were collected after each trial. RESULTS: Compared to pain, dyspnoea induction was perceived as more unpleasant, arousing, and threatening (ps < .001). Affective PF led to higher arousal (p < .01) and threat ratings (p = .01) than sensory PF. Affective PF also led to an increase in retrospective dyspnoea ratings over the course of 2 weeks (p = .039), which was not observed for pain, nor for dyspnoea after sensory PF. The effects of PF on symptom ratings were independent of the HSR levels. CONCLUSIONS: The PF during symptom encoding may explain previously observed bias in retrospective symptom reporting. The results are relevant to understand the mechanisms underlying symptom overreporting. Statement of contribution What is already known on this subject? Retrospective symptom ratings are often biased when compared to the momentary assessments. Attending to either sensory or affective aspects of the somatic experience is one of the factors affecting self-reported symptoms. What does this study add? Focusing on affective aspects elicited by the somatic experience led to an increase in retrospective symptom ratings over time. This is particularly so for more aversive somatic experiences. Directing the processing focus to sensory aspects during symptom encoding can attenuate bias in retrospective symptom reporting.

The Specificity of Health-Related Autobiographical Memories in Patients With Somatic Symptom Disorder.

OBJECTIVE: Patients with somatic symptom disorder (SSD) have persistent distressing somatic symptoms that are associated with excessive thoughts, feelings, and behaviors. Reduced autobiographical memory specificity (rAMS) is related to a range of emotional disorders and is considered a vulnerability factor for an unfavorable course of pathology. The present study investigated whether the specificity of health-related autobiographical memories is reduced in patients with SSD with medically unexplained dyspnea complaints, compared with healthy controls. METHODS: Female patients with SSD (n = 30) and matched healthy controls (n = 24) completed a health-related Autobiographical Memory Test, the Beck Depression Inventory, the Ruminative Response Scale, and rumination scales concerning bodily reactions. Depressive symptoms and rumination were assessed because both variables previously showed associations with rAMS. RESULTS: Patients with SSD recalled fewer specific (F(1,52) = 13.63, p = .001) and more categoric (F(1,52) = 7.62, p = .008) autobiographical memories to health-related cue words than healthy controls. Patients also reported higher levels of depressive symptoms and rumination (all t > 3.00, p < .01). Importantly, the differences in memory specificity were independent of depressive symptoms and trait rumination. CONCLUSIONS: The present study extends findings on rAMS to a previously unstudied sample of patients with SSD. Importantly, the presence of rAMS could not be explained by increased levels of depressive symptoms and rumination. We submit that rAMS in this group reflects how health-related episodes and associated symptoms are encoded in memory.

Accuracy and bias in retrospective symptom reporting.

PURPOSE OF REVIEW: Self-reported bodily symptoms are of primary importance in healthcare and in health-related research. Typically, they are assessed in clinical interviews or by means of traditional questionnaire formats that require the respondent to provide retrospective symptom estimates rated along intuitive frequency and/or intensity standards and aggregated across varying or unspecified time windows. RECENT FINDINGS: Retrospective symptom assessments are often biased when compared to (averaged) momentary assessments of symptoms. A variety of factors and conditions have been identified to influence the amount of bias in symptom reporting. Recent research has focused on the underlying mechanisms for the discrepancy between memory and experience. It is suggested that different types of questions and formats assess different types of information, and each may be relevant for different purposes. Knowledge of these underlying mechanisms also provides a relevant framework to better understand individual differences in symptom reporting, including somatoform and somatic symptom disorder. SUMMARY: Accuracy of self-reported bodily symptoms is important for the clinician and the researcher. Understanding the mechanisms underlying bias may provide an interesting window to understand how symptom episodes are processed, encoded, and consolidated in memory and may also provide clues to modify symptom experiences.

Was it so bad? The role of retrospective memory in symptom reporting.

OBJECTIVE: Retrospective symptom reports are an important source of information in both laboratory and clinical settings. The present study investigated memory for experimentally induced pain and dyspnea in high and low habitual symptom reporters (HSR). METHODS: Healthy women (N = 48; 24 high/24 low HSR) participated in 2 laboratory studies. One study included 2 pain episodes (cold pressor task), the other study included 2 dyspnea episodes (rebreathing task). Pain and dyspnea ratings were collected (a) continuously during symptom inductions, (b) after each trial, (c) immediately after the experiment, and (d) at 2-week follow-up. Symptom ratings, negative affect (NA), and anxiety measures were also completed following each trial. RESULTS: Although the retrospective pain ratings were higher in the high compared with the low HSR group (p = .01), both groups rated recalled dyspnea higher relative to concurrent dyspnea (p < .001). A further increase in bias over time was only found for dyspnea in high HSR (p = .02). Moreover, dyspnea induction was associated with higher state NA (p = .03) and anxiety (p = .007) than pain induction. CONCLUSIONS: Our findings show that even though memory for pain and dyspnea is overall distorted, the extent of bias in symptom recall clearly differs between symptoms and groups. The observed increase of dyspnea reporting over time may have important implications for diagnostic assessment based on symptom reporting.