PROMIS-29 survey confirms major impact of fatigue on health-related quality of life in common variable immunodeficiency

Zhang, Shouling; Kline, Myriam; Fuleihan, Ramsay; Scalchunes, Christopher; Sullivan, Kathleen E.; Jongco, Artemio M.

doi:10.1007/s12026-020-09162-4

Cited by 14 publications

(9 citation statements)

References 34 publications

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“…However, any chronic condition can negatively affect the vitality score ( 33 ). A significant impact of fatigue on QoL in CVID and other PADs using generic questionnaires has been reported ( 8 , 12 , 34 ). In a cohort of paediatric patients with primary immunodeficiency nearly 20% reported severe fatigue when assessed with a paediatric fatigue scale.…”

Section: Discussionmentioning

confidence: 99%

Fatigue Is Common in Immunoglobulin G Subclass Deficiency and Correlates With Inflammatory Response and Need for Immunoglobulin Replacement Therapy

Wågström

Nilsdotter-Augustinsson

Nilsson

et al. 2022

Front. Immunol.

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PurposeIndividuals with immunoglobulin G deficiency (IgGsd) often complain of fatigue. The correlation between systemic inflammation and fatigue is unknown. In this study perceived quality of life (QoL) and fatigue in individuals with IgGsd, on and off immunoglobulin replacement therapy (IgRT) were correlated to inflammatory markers in plasma to identify the subgroup that benefits from IgRT.MethodThirty-five IgGsd-patients were sampled on three occasions: at baseline, after being on IgRT for at least 18 months, and 18 months after discontinuation of IgRT. Short form 36, EQ-5D-5L visual analogue scale and fatigue impact scale questionnaires were used for evaluation of QoL and fatigue. Furthermore, a panel of 92 inflammatory markers were analysed in plasma. Thirty-two gender- and age-matched healthy individuals were included as controls and sampled on one occasion.ResultsQoL was lower and perceived fatigue higher in IgGsd compared to the controls. Severe fatigue and low QoL were associated with the need to restart IgRT (which is considered in IgGsd-individuals with a high burden of infections in Sweden). Twenty-five inflammatory factors were dysregulated in IgGsd and the plasma protein patterns were similar regardless of whether IgRT was ongoing or not. Enrichment analysis indicated IL-10 signalling as the most affected pathway. Severe fatigue was associated with decreased levels of the neurotrophic factors VEGFA and CSF-1.ConclusionFatigue is a major contributory factor to impaired health-related QoL in IgGsd and is related to the need for IgRT. Low-grade systemic inflammation is a potential driver of fatigue. In addition to the burden of infections, we suggest the degree of fatigue should be considered when the decision to introduce IgRT is made.

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Section: Discussionmentioning

confidence: 99%

Fatigue Is Common in Immunoglobulin G Subclass Deficiency and Correlates With Inflammatory Response and Need for Immunoglobulin Replacement Therapy

Wågström

Nilsdotter-Augustinsson

Nilsson

et al. 2022

Front. Immunol.

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“…Individuals with an IEI diagnosis have been found to have challenges with physical function, anxiety, depression, fatigue, sleep disturbance, social participation, and pain as compared to the general population. [5] Recently, the association between fatigue and IEI was explored using a patient registry database. In a 2017 study, Hajjar et al[6] found a signi cantly higher incidence of fatigue in patients with IEI (25.9%, as compared to non-IEI individuals (6.4%, 95% CI 4.9-8.2).…”

Section: Introductionmentioning

confidence: 99%

“…[6] A 2020 study by Zhang et al found signi cant differences between the CVID and non-CVID cohorts in the domains of anxiety, fatigue, and social participation as scored with the Patient-Reported Outcomes Measurement Information System (PROMIS-29). [5] A study of pediatric IEI patients found that fatigue negatively impacts quality of life and daily functioning, but was not associated with disease activity or comorbidity. [7] Given these more recent ndings that substantiate fatigue as an issue in the IEI patient population, further investigation into sleep and sleep quality are necessary.…”

Section: Introductionmentioning

confidence: 99%

Perceived Sleep Quality in Individuals with Inborn Errors of Immunity

Sowers

Sawaged²,

Bowen³

2023

Preprint

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Purpose: Chronic sleep issues can lead to poor quality of life and increased mortality and patients with chronic health conditions often report impaired sleep quality. Higher levels of fatigue have been identified in patients diagnosed with Inborn Errors of Immunity (or Primary Immunodeficiency Diseases). This research sought to better understand perceived sleep quality in individuals diagnosed with IEI. Methods: A survey, which included the validated Sleep Quality Scale, was shared across multiple social media groups for individuals with a diagnosis of IEI. Results: Most of the participants were White/Caucasian females, between the ages of 30 to 74 years. The results of the Sleep Quality Scale suggest that this sample of individuals has moderate impairment of their sleep quality (71.8%), with a mean score of 43.0 (SD = 13.1). When comparing the results of the SQS to other patient populations and healthy control groups, the participants in this study had a poorer sleep quality score. Associations were identified between sleep quality and age, hours of sleep per night, time awake at night, times awake to urinate, attempted daytime naps, chronic pain, and mental health diagnoses. Conclusion: This survey suggests that individuals with Inborn Errors of Immunity have a moderate degree of perceived impairment in sleep quality. Healthcare providers are strongly encouraged to incorporate sleep quality screening in their routine assessments of patients with a diagnosis of Inborn Error of Immunity. Patients who are identified as having impaired sleep quality should be referred for further testing and interventions.

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“…Common variable immunodeficiency (CVID) is a group of genetic disorders under the IEI umbrella which share a similar phenotype and is considered to be the most common symptomatic antibody deficiency diagnosed in adults with an estimated prevalence between 1:100,000 and 1:10,000 [4], There has been an expanding catalog of research into health-related quality of life for individuals with IEI. Individuals with an IEI diagnosis have been found to have challenges with physical function, anxiety, depression, fatigue, sleep disturbance, social participation, and pain as compared to the general population [5]. Recently, the association between fatigue and IEI was explored using a patient registry database.…”

Section: Introductionmentioning

confidence: 99%

“…A 2020 study by Zhang et al. found significant differences between the CVID and non-CVID cohorts in the domains of anxiety, fatigue, and social participation as scored with the Patient-Reported Outcomes Measurement Information System (PROMIS-29) [5]. A study of pediatric IEI patients found that fatigue negatively impacts quality of life and daily functioning, but was not associated with disease activity or comorbidity [7].…”

Section: Introductionmentioning

confidence: 99%

Perceived Sleep Quality in Individuals with Inborn Errors of Immunity

2023

View full text Add to dashboard Cite

Purpose Chronic sleep issues can lead to poor quality of life and increased mortality and patients with chronic health conditions often report impaired sleep quality. Higher levels of fatigue have been identified in patients diagnosed with inborn errors of immunity (or primary immunodeficiency diseases). This research sought to better understand perceived sleep quality in individuals diagnosed with IEI. Methods A survey, which included the validated Sleep Quality Scale, was shared across multiple social media groups for individuals with a diagnosis of IEI. Results Most of the participants were White/Caucasian females, between the ages of 30 and 74 years. The results of the Sleep Quality Scale suggest that this sample of individuals has moderate impairment of their sleep quality (71.8%), with a mean score of 43.0 (SD = 13.1). When comparing the results of the SQS to other patient populations and healthy control groups, the participants in this study had a poorer sleep quality score. Associations were identified between sleep quality and age, hours of sleep per night, time awake at night, times awake to urinate, attempted daytime naps, chronic pain, and mental health diagnoses. Conclusion This survey suggests that individuals with inborn errors of immunity have a moderate degree of perceived impairment in sleep quality. Healthcare providers are strongly encouraged to incorporate sleep quality screening in their routine assessments of patients with a diagnosis of Inborn Error of Immunity. Patients who are identified as having impaired sleep quality should be referred for further testing and interventions.

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PROMIS-29 survey confirms major impact of fatigue on health-related quality of life in common variable immunodeficiency

Cited by 14 publications

References 34 publications

Fatigue Is Common in Immunoglobulin G Subclass Deficiency and Correlates With Inflammatory Response and Need for Immunoglobulin Replacement Therapy

Fatigue Is Common in Immunoglobulin G Subclass Deficiency and Correlates With Inflammatory Response and Need for Immunoglobulin Replacement Therapy

Perceived Sleep Quality in Individuals with Inborn Errors of Immunity

Perceived Sleep Quality in Individuals with Inborn Errors of Immunity

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