Patient-reported financial toxicity in multiple sclerosis: Predictors and association with care non-adherence

2020 ◽  
pp. 135245852091397 ◽  
Author(s):  
Gelareh Sadigh ◽  
Neil Lava ◽  
Jeffrey Switchenko ◽  
Richard Duszak ◽  
Elizabeth A Krupinski ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Life Style ◽  
Self Efficacy ◽  
Financial Toxicity ◽  
Patient Reported ◽  
Neurology Clinic ◽  
Related Quality ◽  
Health Related ◽  
Financial Burdens ◽  
Lower Hrqol

Background: Multiple sclerosis (MS) results in considerable financial burdens due to expensive treatment and high rates of disability, which could both impact care non-adherence. Objective: To measure financial toxicity in MS patients, identify its predictors and association with care non-adherence. Methods: Adult MS patients visiting neurology clinic (June 2018 to February 2019) were consented to complete a survey. Financial toxicity was measured using Comprehensive Score for Financial Toxicity (COST) (range: 0–44, the lower the score, the worse the financial toxicity). Independent predictors of financial toxicity were identified using linear regression. Associations of COST score with patient outcomes were assessed. Results: The mean COST score in 243 recruited patients was 17.4 ± 10.2. In response to financial burdens, 66.7% and 34.7% reported life-style altering behaviors or care non-adherence, respectively. Higher financial self-efficacy was associated with less financial toxicity (coefficient, 1.33 (95% confidence interval (CI), 1.02–1.64); p < 0.001). At least one relapse in the last 3 months was associated with greater financial toxicity (coefficient, −3.34 (95% CI, −6.66 to −0.01); p = 0.049). Greater financial toxicity correlated with life-style-altering coping strategy use ( p < 0.001), care non-adherence ( p = 0.001), and worse health-related quality of life (HRQOL) ( p = 0.03). Conclusion: MS patients with lower financial self-efficacy and prior relapse history are at higher risk for financial toxicity, with associated care non-adherence and lower HRQOL.

Relationship between financial toxicity and health-related quality of life in patients with advanced solid tumors.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 31-31
Author(s):  
Jonas A. De Souza ◽  
Bonnie J. Yap
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Tumor Type ◽  
Financial Toxicity ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Cost

31 Background: Financial toxicity is an important Patient-Reported Outcome (PRO). Its relationship with health-related quality of life (HRQOL) has not been previously described. Therefore, we report the relationship between financial toxicity and health-related quality of life (HRQOL) in patients with advanced cancers. Methods: The global HRQOL was measured by the Functional Assessment of Cancer Therapy-General (FACT-G) and its subscales Physical Well-Being (PWB), Social/Family Well-Being (SWB), Emotional Well-Being (EWB) and Functional Well-Being (FWB). Financial toxicity was assessed by the COST (COmprehensive Score for financial Toxicity), a PRO measure previously developed in 155 patients with advanced cancers. Correlations were calculated using Spearman's correlation. Subject data on tumor type, age, gender, race, income, insurance type and educational level were collected. Results: Fifty patients were assessed. All participants were diagnosed with advanced cancers, were receiving treatment at the time of participation, and had received treatment for at least 3 months. The median COST was 22 (range 0-44), and mean 22.51 (s.d. ±10.80). A negative correlation existed between the COST and HRQOL as measured by the FACT-G (r = -0.47, P <.001), and its subscales: PWB (r=-0.35, p < 0.05), SWB (r=-0.33, p < 0.05), EWB (r=-0.32, p < 0.05) and FWB (r=-0.41, p < 0.01). In this small sample, there were no correlations between the COST and sociodemographic characteristics. Conclusions: Results demonstrate an inverse relationship between patient-reported HRQOL and financial toxicity, suggesting that higher financial toxicity is associated with worse HRQOL. A larger study is in progress to identify cancer patients at higher risk of financial toxicity.

Patient-Reported Self-Efficacy, Anxiety, and Health-Related Quality of Life During Chemotherapy: Results From a Longitudinal Study

2017 ◽  
Vol 44 (1) ◽  
pp. 127-136 ◽  
Author(s):  
Constantina Papadopoulou ◽  
Grigorios Kotronoulas ◽  
Annegret Schneider ◽  
Morven Miller ◽  
Jackie McBride ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Longitudinal Study ◽  
Self Efficacy ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

scholarly journals Patterns and correlates of sedentary behaviour among people with multiple sclerosis: a cross-sectional study

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Jennifer Fortune ◽  
Meriel Norris ◽  
Andrea Stennett ◽  
Cherry Kilbride ◽  
Grace Lavelle ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sedentary Behaviour ◽  
Self Efficacy ◽  
Sedentary Time ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Breaks In Sedentary Time

AbstractHigh levels of sedentary behaviour are associated with poor health outcomes in people with multiple sclerosis (MS). Identifying modifiable correlates of sedentary behaviour for people with MS is essential to design effective intervention strategies to minimise sedentary time. This study aimed to quantify patterns and identify correlates of sedentary behaviour among adults with MS. Fatigue, self-efficacy, walking capability, the physical and psychological impact of MS, health-related quality of life, and participation and autonomy were assessed by questionnaire. Participants wore an activPAL monitor. Total (min/day), prolonged bouts (≥ 30 min) and breaks in sedentary time were calculated. Associations were examined using regression analysis adjusted for demographic and clinical confounders. Fifty-six adults with MS participated (mean ± SD age: 57.0 ± 9.25 years; 66% female). Self-efficacy for control over MS was associated with sedentary time (β = 0.16, 95% CI 0.01, 0.30). Self-efficacy in function maintenance (β = 0.02, 95% CI 0.00, 0.04), health-related quality of life (EuroQol-5D) (β = 31.60, 95% CI 7.25, 55.96), and the autonomy indoors subscale of the Impact on Participation and Autonomy Questionnaire (β = − 5.11, 95% CI − 9.74, − 0.485) were associated with breaks in sedentary time. Future studies should consider self-efficacy, health-related quality of life and participation and autonomy as potential components of interventions to reduce sedentary behaviour.

scholarly journals The Effect of Fatigue and Pain Self- Efficacy on Health-Related Quality of Life Among Patients with Multiple Sclerosis

2019 ◽  
Vol 31 (1) ◽  
pp. 40 ◽  
Author(s):  
Fevronia Adamopoulou ◽  
Victoria Alikari ◽  
Sofia Zyga ◽  
Maria Tsironi ◽  
Fotini Tzavella ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Self Efficacy ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals The impact of ocrelizumab on health-related quality of life in individuals with multiple sclerosis

2021 ◽  
Vol 7 (2) ◽  
pp. 205521732110075
Author(s):  
Bonnie I Glanz ◽  
Jonathan Zurawski ◽  
Emily C Casady ◽  
Rebecca Shamah ◽  
Mira Weiner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Characteristics ◽  
Health Related Quality ◽  
Sf 36 ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background Ocrelizumab is approved for the treatment of both relapsing and progressive multiple sclerosis (MS). Objective To examine the impact of ocrelizumab on health-related quality of life (HRQOL) in individuals with MS. Methods Ninety-eight individuals with relapsing and 32 with progressive MS were enrolled. Participants were administered a battery of patient-reported outcome (PRO) measures at their first ocrelizumab infusion, and infusions at 6 and 12 months. PRO measures included the Medical Outcomes Study SF-36 and Neuro-QoL. Results At baseline, participants had low mean scores across HRQOL domains. After 12 months, increases were observed on SF-36 Role-Physical, General Health, Vitality, Role-Emotional, Mental health and Mental Component Summary. On Neuro-QoL, improvements were seen in Positive Affect, Anxiety, Emotional and Behavioral Dyscontrol and Fatigue. Several demographic and clinical characteristics were associated with HRQOL at baseline. The strongest associations were between physical HRQOL measures and measures of MS disability. Associations between the longitudinal change in HRQOL scores and baseline demographic and clinical characteristics were mild. Conclusions We observed significant improvements across multiple mental HRQOL domains at 12 months in individuals treated with ocrelizumab. These findings support the use of HRQOL measures to provide a subjective measure of treatment impact that complements traditional outcomes.

scholarly journals Impact of Visual Impairment on Health-Related Quality of Life in Multiple Sclerosis

2010 ◽  
Vol 12 (2) ◽  
pp. 83-91 ◽  
Author(s):  
Vivek S. Pawar ◽  
Gauri Pawar ◽  
Lesley-Ann Miller ◽  
Iftekhar Kalsekar ◽  
Jan Kavookjian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Visual Impairment ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

The aim of this study was to evaluate the impact of visual impairment on health-related quality of life (HRQOL) in patients with multiple sclerosis (MS). Patients at an outpatient MS clinic were asked to complete a battery of patient-reported outcome questionnaires. Health-related quality of life was measured using the Hamburg Quality of Life Questionnaire for Multiple Sclerosis (HAQUAMS), while visual impairment was measured using the Visual Function Questionnaire (VFQ). Hierarchical regression was used to determine the relative contribution of visual impairment to HRQOL. Usable responses were obtained for 116 MS patients. Those with higher levels of visual impairment (lower scores on the VFQ) reported significantly lower HRQOL (β = –0.01, P = .0007). Visual impairment also explained an additional 4% variance in the HRQOL scores, independent of disability and depression (ΔR2 = 0.04, F7,108 = 36.58). Overall, disability was the strongest predictor of HRQOL, explaining over 60% of the variation in HRQOL scores. The model explained 70% of the total variance in HRQOL. Given the prevalence of visual impairment and its influence on overall HRQOL, MS patients should be routinely screened using standard ophthalmic examination procedures or self-administered questionnaires such as the VFQ.

scholarly journals Short Report: Impact of Sleep Disorders on Depression and Patient-Perceived Health-Related Quality of Life in Multiple Sclerosis

2019 ◽  
Vol 21 (1) ◽  
pp. 10-14 ◽  
Author(s):  
Emily K. White ◽  
Amy B. Sullivan ◽  
Michelle Drerup
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sleep Disorders ◽  
Sleep Disorder ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Background: Sleep disorders in multiple sclerosis (MS) are associated with reduced health-related quality of life (HRQOL) and depression. However, research investigating and comparing how the two most common sleep disorders—insomnia and obstructive sleep apnea (OSA)—affect depression and HRQOL in MS is limited. The goal of this study is to examine the impact of diagnosed sleep disorders on patient-reported 1) HRQOL and 2) depressive symptoms in patients with MS. Methods: We performed a retrospective medical record review of 531 adult patients with MS: 287 (54%) with a comorbid sleep disorder (insomnia or OSA) and 244 (46%) without a diagnosed sleep disorder. Results: Neither 1) average ratings of depression or HRQOL nor 2) the proportion of moderate depression or moderately impaired HRQOL differed between individuals with MS and insomnia and those with MS and OSA. Neither sleep disorder predicted increased depression or poorer HRQOL. However, individuals with MS and a comorbid sleep disorder (insomnia or OSA) had poorer HRQOL compared with those without a diagnosed sleep disorder (MS only). Conclusions: Presence of a diagnosed sleep disorder may negatively affect HRQOL in MS. Providers should continue to screen for sleep disorders given their negative impact on patients with MS and the availability of effective treatments for insomnia and OSA.

Protocol The QUEST initiative – QUality of life Evaluation STudy: Assessing Health Related Quality of Life in patients receiving Medicinal Cannabis (Preprint)

2021 ◽  
Author(s):  
Margaret-Ann Tait ◽  
Daniel S.J. Costa ◽  
Rachel Campbell ◽  
Richard Norman ◽  
Stephan Schug ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Chronic Pain ◽  
Short Form ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Medicinal Cannabis

BACKGROUND Existing evidence supports several countries introducing legislations to allow cannabis-based medicine as adjunctive treatment for the symptomatic relief of chronic pain, chemotherapy-induced nausea, spasticity in multiple sclerosis, epileptic seizures, depression, and anxiety. However, clinical trial participants do not represent the entire spectrum of disease and health status seen in patients currently accessing medicinal cannabis in practice. OBJECTIVE This study will collect real-world data to evaluate health-related quality of life and symptoms in patients prescribed medicinal cannabis oil formulations, and describe any differences over time from baseline, before starting therapy, to 3 months and 12 months on therapy. METHODS Adult patients newly prescribed medicinal cannabis oil by Authorised Prescribers and under the Special Access Schemes across clinics within Australia will be screened for eligibility and sent an invitation to participate. A sample size of 2142 is required with a minimum follow-up of 3 months. All participants will complete the EQ-5D, QLQ-C30, DASS21, Patients’ global impression of change, PROMIS Short Form v1.0 Sleep Disturbance 8b, and PROMIS Fatigue 13a/FACIT-Fatigue questionnaires. Patients with chronic pain conditions will also complete PROMIS Scale v1.0 - Pain Intensity 3a, and PROMIS Short Form v1.0 - Pain Interference 8a. Patients with movement disorders will also complete Neuro-QoL v1.0 – Upper Extremity Function (Fine Motor, ADL) – Short Form, and if Chorea is indicated, the Neuro-QoLTM Short Form v2.0 – HDQLIFE – Chorea 6a. All questionnaires will be administered at baseline, 2 weeks (titration), monthly to 3 months, then every 2 months up to one year. RESULTS Participant recruitment commenced in November 2020. By June 2021, 1095 patients had been screened for the study by 69 doctors in centres across six Australian states; Australian Capital Territory, New South Wales, Queensland, South Australia, Victoria, and Western Australia. Of the 1095 patients screened, 833 participants have completed questionnaires and remained on the study. Final results are expected to be published in 2022. Results from this study will show whether patient-reported outcomes improve in patients accessing prescribed medicinal cannabis from baseline to 3-months, and if any changes are maintained over a 12-month period. This study will also identify if there are differences in improvements in PROs between patients with different chronic conditions (e.g. chronic pain, multiple sclerosis, epilepsy, Parkinson’s disease, or cancer). CONCLUSIONS This study protocol contains detailed methods that will be used across multiple sites in Australia. The findings from this study have potential to be integral to treatment assessment and recommendations for chronic pain sufferers and other patients with health indicators for accessing medicinal cannabis. CLINICALTRIAL ANZCTR Trial Registration: 12621000063819

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