Exploring Discordance Between Patients and Clinicians—Understanding Perceived Disease Severity

Barbieri, John S.; MacDonald, Karen

doi:10.1001/jamadermatol.2023.2007

Cited by 5 publications

(4 citation statements)

References 17 publications

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“…However, studies also demonstrate that the NIH Skin Score can be subject to poor inter-rater reliability and responsiveness to change . PROs are increasingly found to be discordant, and thus provide complementary information to clinical assessment measures . We show that PROs are impaired in patients with skin chronic GVHD independent of other factors, improve while on treatment, and may be a valuable addition to the NIH Skin Score in measuring disease severity and therapeutic benefit.…”

Section: Discussionmentioning

confidence: 85%

Patient-Reported Outcomes and Mortality in Cutaneous Chronic Graft-vs-Host Disease

Baumrin,

Shin,

Mitra

et al. 2024

JAMA Dermatol

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ImportanceChronic graft-vs-host disease (GVHD) is associated with impaired quality of life and symptom burden. The independent association of skin involvement with patient-reported outcomes (PROs) and their utility as a clinical prognostic marker remain unknown. Identification of patients with cutaneous chronic GVHD and impaired PROs could assist in initial risk stratification and treatment selection.ObjectiveTo compare the association of sclerotic and epidermal-type chronic GVHD with longitudinal PROs and to evaluate whether PROs can identify patients with cutaneous chronic GVHD at high risk for death.Design, Setting, and ParticipantsThis multicenter prospective cohort study involved patients from the Chronic GVHD Consortium of 9 US medical centers, enrolled between August 2007 and April 2012, and followed up until December 2020. Participants included adults 18 years and older with a diagnosis of chronic GVHD requiring systemic immunosuppression and with skin involvement during the study period.Main Outcomes and MeasuresPatient-reported symptom burden was assessed using the Lee Symptom Scale (LSS) skin subscale with higher scores indicating worse outcomes. Quality of life was measured using the Functional Assessment of Cancer Therapy–Bone Marrow Transplantation (FACT-BMT) instrument with lower scores indicating worse outcomes. Nonrelapse mortality, overall survival, and their association with PROs at diagnosis were also assessed.ResultsAmong 436 patients with cutaneous chronic GVHD (median [IQR] age at transplant, 51 [41.5-56.6] years; 261 [59.9%] male), 229 patients had epidermal-type chronic GVHD (52.5%), followed by 131 with sclerotic chronic GVHD (30.0%), and 76 with combination disease (17.4%). After adjusting for confounders, patients with sclerotic chronic GVHD had mean FACT-BMT scores 6.1 points worse than those with epidermal disease (95% CI, 11.7-0.4; P = .04). Patients with combination disease had mean LSS skin subscale scores 9.0 points worse than those with epidermal disease (95% CI, 4.2-13.8; P &lt; .001). Clinically meaningful differences were defined as at least 7 points lower for FACT-BMT and 11 points higher for LSS skin subscale. At diagnosis, clinically meaningful worsening in FACT-BMT score was associated with an adjusted odds of nonrelapse mortality increased by 9.1% (95% CI, 2.0%-16.7%; P = .01). Similarly, for clinically meaningful worsening in LSS skin subscale score, adjusted odds of nonrelapse mortality increased by 16.4% (95% CI, 5.4%-28.5%; P = .003). These associations held true after adjusting for clinical severity by the National Institutes of Health Skin Score.Conclusions and RelevanceThe results of this cohort study demonstrated that skin chronic GVHD was independently associated with long-term PRO impairment, with sclerotic and combination disease carrying the highest morbidity. The degree of impairment at skin chronic GVHD diagnosis was a prognostic marker for mortality. Therefore, PROs could be useful for risk stratification and treatment selection in clinical practice and clinical trials.

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Section: Discussionmentioning

confidence: 85%

Patient-Reported Outcomes and Mortality in Cutaneous Chronic Graft-vs-Host Disease

Baumrin,

Shin,

Mitra

et al. 2024

JAMA Dermatol

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“…Reports in other fields have also described discrepancies in the perception of symptom improvement between clinicians and patients. [20][21][22] These differences arise from varying priorities in what clinicians and patients focus on when assessing symptom improvement. 21 Thus, voice clinicians must increasingly recognize and understand these differences in how clinicians and patients approach symptom management.…”

Section: Discussionmentioning

confidence: 99%

“…Although discrepancies between clinicians and patients regarding improvements for voice disorders have not been thoroughly discussed to date, Childs et al reported nonlinear relationship between clinician-rated voice dysfunction and patient-perceived vocal handicap. 19 Such discrepancies also have been reported in other fields, including dermatological diseases, 20 rheumatic conditions, 21 and urogynecology, 22 emphasizing that clinicians must be aware of the differences in perceptions regarding symptom improvement between clinicians and patients, which would be also true in voice disorders. Therefore, the evaluation of the MID of the AVQI would be important to both clinicians and patients.…”

Section: Introductionmentioning

confidence: 97%

The Minimal Important Difference of Acoustic Voice Quality Index in the Treatment of Voice Disorders

Hosokawa,

Iwahashi,

Iwahashi

et al. 2023

The Laryngoscope

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ObjectivesThe acoustic voice quality index (AVQI) is a reliable tool that objectively assesses dysphonia levels using six acoustic parameters. Despite its high criterion‐related concurrent validity, diagnostic accuracy, and minimal detectable change derived from test–retest reliability, the minimal important difference (MID) of the AVQI has not been tested before. This study aimed to estimate the MIDs of AVQI for improvement audibly perceived by clinicians and self‐reported improvement by patients.MethodsA retrospective study was conducted on 110 patients who received treatment for voice disorders. Patients completed AVQI and Voice Handicap Index‐10 (VHI‐10) questionnaires before and after the therapy. The MIDs of the AVQI were estimated using the anchor of either auditory–perceptual judgment of total dysphonia levels by clinicians or the VHI‐10 questionnaire by patients. A distribution‐based approach was also used to complement the results.ResultsFirst, using the auditory–perceptual anchor, a decrease of 0.95 in the AVQI was estimated as the MID for clinicians' perception, as a result of the receiver operating curve. Then, using the patient‐reported anchor, an improvement of 1.36 in the AVQI was estimated as the MID for patients' voice‐related disability. The distribution‐based approach also ensured the anchor‐based results of both the MIDs.ConclusionsThe AVQI is a reliable and valid tool for evaluating voice quality, and a 0.95 decrease in the AVQI represents a meaningful improvement for clinicians' perception, whereas a 1.36 decrease in the AVQI influences patients' self‐reported disability. This study contributes to understanding the minimal change necessary for clinicians to make informed decisions and ensure patient satisfaction.Level of Evidence3 Laryngoscope, 2023

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“…We combined the SkindexMini with itch scoring, pain scores, patient global assessment of disease, and patient assessment of treatment adequacy, creating a nine-question tool which we termed the standardized dermatology outcomes measure (SDOM; see supplementary material). This tool targets collection of critical subjective information that may be missed by physicians leading to underestimating the severity and impact of skin disease [ 11 , 12 ].…”

Section: Defining the Data Capture Problem: The What And The Howmentioning

confidence: 99%

The Changing Tasks of Medicine and Dermatology in the Twenty-First Century: The Need for Improved Information Capture Tools and Processes

Yeung,

Li,

Swerlick

2023

Dermatol Ther (Heidelb)

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The delivery of dermatology services has undergone dramatic changes in the past century. The goals and timelines of care have evolved as have the diagnostic and therapeutic tools, resulting in the need to capture and manage information differently, both qualitatively and quantitatively. The predominant and basic office-based ambulatory care model has remained relatively unchanged. Patients and providers interact with minimal pre-visit preparation using the “agenda-less” meeting model. This care model is ill-suited to manage the vastly expanded data capture and processing requirement of twenty-first century dermatology. We have developed novel tools to automate pre-visit data collection which allows for more robust information capture which moves data capture outside of the time-constrained clinic visit. These tools capture structured data, integrate into electronic health records, and create summary reports in real time to assist decision-making. These tools, if scaled, can facilitate the information management needs of dermatology care. Supplementary Information The online version contains supplementary material available at 10.1007/s13555-023-01046-3.

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Exploring Discordance Between Patients and Clinicians—Understanding Perceived Disease Severity

Cited by 5 publications

References 17 publications

Patient-Reported Outcomes and Mortality in Cutaneous Chronic Graft-vs-Host Disease

Patient-Reported Outcomes and Mortality in Cutaneous Chronic Graft-vs-Host Disease

The Minimal Important Difference of Acoustic Voice Quality Index in the Treatment of Voice Disorders

The Changing Tasks of Medicine and Dermatology in the Twenty-First Century: The Need for Improved Information Capture Tools and Processes

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