Maas MB, Reid KJ, Jimenez M, Lopez M, Miller J, Carnethon MR, Zee PC, Knutson KL, Koralnik IJ. Multidimensional Characterization of Long COVID Fatigue. Behav Sleep Med. 2025 Jun 19:1-10. doi: 10.1080/15402002.2025.2522671. Epub ahead of print. PMID: 40537100.
 
The authors examined relationships between fatigue, mood, cognition, and sleep in individuals with long COVID. Self-reported health status (fatigue, anxiety, depression, cognitive function, sleep disturbance) was measured with PROMIS questionnaires. Cognition was also assessed using performance-based tests, and sleep and circadian rest-activity rhythms were assessed using wrist actigraphy and a sleep diary. A subset also underwent a more comprehensive sleep study. Most of the sample had moderate or severe fatigue. Higher fatigue was associated with worse depressive symptoms and worse patient-reported (but not performance-based) cognitive function. Fatigue severity was also associated with greater disruptions of the rest-activity pattern.
 
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van Hof KS, Herkendaal AF, Ten Koppel PGJ, Baatenburg de Jong RJ, Sewnaik A, Offerman MPJ. Patients' and Physicians' Perspectives on Using an ePRO Structure at the Otorhinolaryngology Outpatient Clinic. Laryngoscope. 2025 Jun 17. doi: 10.1002/lary.32353. Epub ahead of print. PMID: 40525491.
 
The authors aimed to evaluate the patient and physician experience of using electronic PROMs in outpatient rhinoplasty care. PROMIS-10 was used in addition to disease-specific PROMs, and real-time scores were presented in a dashboard during the consultation. Patients completed a patient-reported experience measure, and semi-structured interviews were completed with patients and physicians. Quantitatively, patients reported fewer missed consultation topics when receiving the electronic PROM care versus routine care. Qualitatively, both patients and physicians perceived more value of disease-specific versus generic PROMs, and patients felt more empowered and prepared when using PROMs. For the future, patients wanted a patient dashboard, and physicians wanted to use the aggregate data for quality improvement.
 
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Segawa E. Increase of Uncertainty in Summed-Score-Based Scoring in Non-Rasch IRT. Appl Psychol Meas. 2025 Jun 12:01466216251350342. doi: 10.1177/01466216251350342. Epub ahead of print. PMID: 40520435; PMCID: PMC12162545.
 
This psychometric paper examined in a more granular way the amount of uncertainty introduced by summed-score scoring compared to response-pattern scoring for PROMIS short forms. Using the methods described in the paper, the author was able to identify short forms for which the summed-score approach introduced either very small increases in uncertainty (suggesting limited advantages of response-pattern scoring, especially when resources make computerized administration challenging) or large increases in uncertainty (suggesting instances where summed-score scoring may be problematic).
 
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**Bonus paper - not PROMIS-specific but of interest to PROMIS readers**
 
Vickers A, Nolla K, Cella D. Drop the "M": Minimally Important Difference and Change Are Not Independent Properties of an Instrument and Cannot Be Determined as a Single Value Using Statistical Methods. Value Health. 2025 Jun;28(6):894-897. doi: 10.1016/j.jval.2024.09.018. Epub 2025 Apr 10. PMID: 40216310.
 
The authors discuss the limitations of the concept of the minimally important difference and emphasize the need to interpret scores in context.

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van Meijeren-Pont W, Arwert H, Vliet Vlieland TPM , Westerbeek-Couwenberg MM, Jellema K, Terwee CB, Oosterveer DM. Comparison of PROMIS® CAT Profile scores of stroke patients in a hospital and rehabilitation setting. Advances in Patient-Reported Outcomes. 2025:100189. doi: 10.1016/j.apro.2025.100189. Epub ahead of print.

The researchers examined PROMIS-29 scores (administered via computer adaptive tests or on paper) in two stroke populations in the Netherlands: an inpatient hospital sample and a combined inpatient/outpatient rehabilitation sample. Both T-scores were compared as well as dichotomous indicators for whether the domain was at least mildly affected. The hospital sample had worse scores for physical function and social participation but better pain interference, fatigue, anxiety, and depression. In the hospital sample, the majority of patients had affected physical function and social participation while, in the rehabilitation sample, the majority of patients had affected physical function. As a secondary aim, some sex-specific differences in PROMIS scores were also observed.

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Holeman TA, Brooke BS, Hales JB, Wei Y, Zhang Y, Steinberg BA, Cizik AM. Establishing minimal clinically important difference for PROMIS Physical Function improvement after revascularization for peripheral artery disease. Advances in Patient-Reported Outcomes. 2025:100188. doi: 10.1016/j.apro.2025.100188. Epub ahead of print.

The researchers aimed to identify a threshold for meaningful improvement in PROMIS physical function scores (administered via computer adaptive test) after lower extremity revascularization and identify factors associated with improvement. Both anchor-based and distribution-based approaches were used to identify the MCID value, estimated at ≥ 5 points. 25 of 62 patients met that MCID threshold. Only baseline scores were associated with reaching that threshold, with higher starting scores decreasing the odds of reaching the threshold. There was not great alignment between technical success (measured by an ankle brachial index change) and reaching the MCID threshold.

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Qureshi N, Siconolfi D, Rodriguez A, Hays RD, Coulter ID, Herman PM. Comparing three measures of sleep disturbance in persons with chronic low back and neck pain. Advances in Patient-Reported Outcomes. 2025:100187. doi: 10.1016/j.apro.2025.100187. Epub ahead of print.

The researchers examined associations between multiple sleep items (1 item from the Oswestry Disability Index, 1 item from the Neck Disability Index, 4-item PROMIS-29 Sleep Disturbance, and the PROMIS-29 Sleep20 item) in a subsample of patients with both chronic low back and neck pain from chiropractic practices across the United States. There are multiple differences between these items, including related to the exact sleep problem and the recall period. Responses were collected at baseline and at a 3-month follow-up. There were strong correlations between the ODI and NDI, potentially suggesting difficulty with specific attribution of problems to a body region. There were moderate to strong correlations between the ODI or NDI and PROMIS sleep items. However, participants generally endorsed greater levels of sleep disturbance for PROMIS items versus the ODI and NDI.

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Sawano M, Bhattacharjee B, Caraballo C, et al. Nirmatrelvir-ritonavir versus placebo-ritonavir in individuals with long COVID in the USA (PAX LC): a double-blind, randomised, placebo-controlled, phase 2, decentralised trial.Lancet Infect Dis. 2025 Apr 3:S1473-3099(25)00073-8. doi: 10.1016/S1473-3099(25)00073-8. Epub ahead of print. PMID: 40188838.

This decentralized pharmacological trial examined the efficacy and safety of nirmatrelvir–ritonavir versus placebo–ritonavir for individuals with long Covid. The PROMIS-29 v2.1 Physical Health Summary Score was used as the primary efficacy endpoint (difference in baseline to day 28 change between the 2 groups). Secondary efficacy endpoints included the PROMIS-29 v2.1 Mental Health Summary Score, PROMIS-Preference Score, and PROMIS v2.0 Cognitive Function Short Form 6a along with other non-PROMIS standardized PROMs plus long Covid symptom reporting not captured in existing PROMs. The authors found no significant between-group differences in any efficacy endpoint. However, this study more broadly highlights the feasibility of decentralized trials, including the role of PROMs in such designs.

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Odom JN, Lee K, Harrell ER, et al. Associations between smartphone GPS data and changes in psychological health and burden outcomes among family caregivers and patients with advanced cancer: an exploratory longitudinal cohort study. BMC Cancer. 2025 Apr 4;25(1):614. doi: 10.1186/s12885-025-14009-y. PMID: 40186196; PMCID: PMC11971861.

In this exploratory study, the authors looked at the correlations over 24 weeks between passively collected smartphone sensor data (continuous GPS data; biweekly summaries) and PROM scores collected every 6 weeks in patients with advanced cancer and family caregivers. All participants completed the Hospital Anxiety and Depression Scale and the global mental health subscale of PROMIS Global-10. Caregivers also completed the Montgomery-Borgatta Caregiver Burden Scale. Both individual and dyadic analyses were completed. Some associations between sensor data and self-reported mental health were observed for both patients and caregivers. There were also some associations specifically between patient (or combined patient and caregiver) sensor data and caregiver burden. The findings highlight the potential for incorporating remote digital phenotyping to support those living with cancer.

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Phan TT, Rhodes ET, Arasteh K, et al. Association Between Obesity-Related Health Factors and Patient-Reported Outcomes: Linking Patient-Reported Outcomes to PEDSnet Electronic Health Record Data. Child Obes. 2025 Apr 22. doi: 10.1089/chi.2024.0380. Epub ahead of print. PMID: 40261725.

The authors linked patient-reported outcome survey data with longitudinal electronic health record data (standardized across institutions within a network using a common data model) to describe associations between clinical and patient-reported variables among youth with obesity. The selected PROMIS measures included the Pediatric Scale v1.0–Global Health 7, Parent-Proxy Scale v1.0–Global Health 7, Pediatric Short Form v1.0-Family Relationships 4a, and Parent-Proxy Short Form v1.0-Family Relationships 4a as well as PROMIS items measuring fatigue and stress. Data were linked by the network coordinating center. Both self-report and parent-proxy global health were below scores in the reference population. Factors such as increasing BMI percentile trajectory, number of comorbidities, and obesity-related medications were associated with poorer health-related quality of life. The study highlights how linking multiple sources of data can provide important insights.