Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease

Carlozzi, Noelle E.; Goodnight, Siera; Kratz, Anna L.; Stout, Julie C.; McCormack, Michael K.; Paulsen, Jane S.; Boileau, Nicholas R.; Cella, David; Ready, Rebecca E.

doi:10.3233/jhd-190364

Cited by 19 publications

(23 citation statements)

References 135 publications

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“…[12][13][14] Surveys of patients with stigmatizing conditions are an important part of understanding their stigma experience. [15][16][17] However, previous studies of digital amputation stigma have been limited to surveys of surgeons and the general non-amputee public regarding expectations and assumptions surrounding a theoretical amputee's experience. Given the potential implications for indicating replantation/digit preservation, or simply for counseling new amputees in an evidence-based manner, this absence of patient-reported data from digital amputees represents a meaningful de cit in the literature.…”

Section: Introductionmentioning

confidence: 99%

The Stigma of Digital Amputation: A Survey of Amputees with Analysis of Risk Factors

Bettlach

Gibson

Daines

et al. 2021

Preprint

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Purpose: We aimed to quantify the stigma associated with digital amputation using the Neuro-QOL Stigma patient-reported outcomes instrument and examine the patient and injury factors associated with a more severe amputation stigma experience. Methods: This descriptive retrospective cohort study analyzed 164 patients who underwent digital amputation. Records were reviewed for age at amputation, sex, indication, laterality, level, number of amputated digits, and a diagnosis of depression that preceded amputation. Enrolled patients remotely completed the Neuro-QOL stigma computer adaptive test, a battery of PROMIS instruments, and a questionnaire clarifying personal/injury details. Multivariable analysis was used to identity factors associated with a more severe stigma experience.Results: Among 164 digital amputees enrolled, the observed mean Neuro-QOL Stigma score of 47.2 +/- 8 is slightly below the population mean of 50. Younger age, a worker’s compensation claim, and a diagnosis of depression at the time of amputation are each independently associated with a more severe stigma experience after digital amputation. Neither socioeconomic variables, anatomic details of the injury, nor mechanism were independently associated with Neuro-QOL Stigma. Conclusions: While we have previously targeted patients with more severe injuries for discussion of coping with physical stigma, our findings suggest that attention should perhaps instead be focused on digital amputees who are young, depressed, and/or involved with worker’s compensation. A surgeon may be of service to the at-risk patient by offering referral to a mental health provider who can offer depression treatment and/or support the patient’s process of coping and adjustment.

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Section: Introductionmentioning

confidence: 99%

The Stigma of Digital Amputation: A Survey of Amputees with Analysis of Risk Factors

Bettlach

Gibson

Daines

et al. 2021

Preprint

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“…Neuro‐QoL Depression 41 assesses perceptions of sadness and helplessness; data support its reliability, validity, and responsiveness in HD 6,42,43 …”

Section: Methodsmentioning

confidence: 91%

“…PROMIS Anger 44 , 45 , 46 assesses feelings of frustration and anger; data support its reliability, validity, and responsiveness in HD. 6 , 42 , 43 …”

Section: Methodsmentioning

confidence: 99%

“…Neuro‐QoL PAW 41 assesses feelings of happiness, enjoyment, and contentment; data support its reliability, validity, and responsiveness in HD. 6 , 42 , 43 …”

Section: Methodsmentioning

confidence: 99%

“…Neuro‐QoL Stigma 41 assesses perceptions of discrimination toward an individual; data support its reliability, validity, and responsiveness in HD. 6 , 42 , 43 …”

Section: Methodsmentioning

confidence: 99%

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Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life

Sokol

Troost

Kluger

et al. 2021

Ann Clin Transl Neurol

Self Cite

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Objective Previous work in Huntington’s disease (HD) has shown that a sense of meaning and purpose (M&P) is positively associated with positive affect and well‐being (PAW); however, it was unknown whether HD‐validated patient‐reported outcomes (PROs) influence this association and how M&P impacts PROs in the future. Our study was designed to examine if HD‐validated PROs moderate the relationship between M&P and PAW and to evaluate if baseline M&P predicts 12‐ and 24‐month changes in HD‐validated PROs. Methods This was a longitudinal, multicenter study to develop several PROs (e.g., specific for the physical, emotional, cognitive, and social domains) for people with HD (HDQLIFE). The sample consisted of 322 people with HD (n = 50 prodromal, n = 171 early‐stage manifest, and n = 101 late‐stage manifest HD). A single, multivariate linear mixed‐effects model was performed with PAW as the outcome predicted by main effects for M&P and several moderators (i.e., an HD‐validated PRO) and interactions between M&P and a given PRO. Linear‐mixed models were also used to assess if baseline M&P predicted HD‐validated PROs at 12 and 24 months. Results Higher M&P was positively associated with higher PAW regardless of the magnitude of symptom burden, as represented by HD‐validated PROs, and independent of disease stage. In our primary analysis, baseline M&P predicted increased PAW and decreased depression, anxiety, anger, emotional/behavioral disruptions, and cognitive decline at 12 and 24 months across all disease stages. Interpretation These findings parallel those seen in the oncology population and have implications for adapting and developing psychotherapeutic and palliative HD interventions.

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Having More Tender Than Swollen Joints is Associated With Worse Function and Work Impairment in Patients With Early Rheumatoid Arthritis

Meng,

Lee,

Schieir

et al. 2024

ACR Open Rheumatology

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ObjectivePatients with early rheumatoid arthritis (RA) may present with more tender than swollen joints, which can persist. Elevated tender‐swollen joint difference (TSJD) is often challenging, because there may be multiple causes and it may contribute to overestimating disease activity. Little is known about the phenotype and impact of TSJDs on patient function. Our objective was to evaluate the impact of TSJD on functional outcomes in early RA and to see whether associations vary by joint size.MethodsData were from patients with active, early RA (≤12 months) enrolled in the Canadian Early Arthritis Cohort, who completed assessments of general function (Multidimensional Health Assessment Questionnaire [MDHAQ]), upper extremity (UE) function (Quality of Life in Neurological Disorders [Neuro‐QoL] UE scale), and work/activity impairment (Work Productivity and Activity Impairment RA) over their first year of follow‐up. A total of 28 joint counts were performed. TSJDs were calculated. Adjusted associations between TSJDs and functional outcomes were estimated in separate multivariable linear mixed effects models. Separate analyses were performed for large‐ versus small‐joint TSJD.ResultsPatients (N = 547) were 70% female, mean age 56 (SD 15) years, mean disease duration 5.3 (SD 2.9) months. At baseline, 287 (52%) had TSJD >0 (43% involved large joints and 34% small joints), decreasing to 32% at 12 months. A one‐point increase in TSJD was significantly associated with worse function (MDHAQ: adjusted mean change 0.10, 95% confidence interval [CI] 0.08–0.13; Neuro‐QoL UE function T score: adjusted mean change −0.59, 95% CI −0.76 to −0.43; and greater work impairment: adjusted mean change 1.95%, 95% CI 0.85%–3.05%). Higher large‐joint TSJDs were associated with the worst functional outcomes.ConclusionHaving more tender than swollen joints is common in early RA and is associated with worse function, most notably when involving large joints. Early identification and targeted intervention strategies may be needed.

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Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease

Cited by 19 publications

References 135 publications

The Stigma of Digital Amputation: A Survey of Amputees with Analysis of Risk Factors

The Stigma of Digital Amputation: A Survey of Amputees with Analysis of Risk Factors

Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life

Having More Tender Than Swollen Joints is Associated With Worse Function and Work Impairment in Patients With Early Rheumatoid Arthritis

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