A Novel Electronic Application of Patient-reported Outcomes in Multiple Sclerosis – Meeting the Necessary Challenge of Assessing Quality of Life and Outcomes in Daily Clinical Practice

2014 ◽  
Vol 9 (1) ◽  
pp. 49 ◽  
Author(s):  
Simon Exell ◽  
Mark Thristan ◽  
Fernando Dangond ◽  
Kurt Marhardt ◽  
Meaghan St Charles Krohe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Negative Impact ◽  
Patient Reported Outcome ◽  
Software Application ◽  
Wireless Data Transmission ◽  
Patient Reported ◽  
Auto Injector

Multiple sclerosis (MS) has a substantial negative impact on health-related quality of life. Clinical assessments often do not include standardised, routine assessment of MS impact from the patient perspective, and communication between healthcare practitioners (HCPs) and patients can be lacking. Thus, there is a need for patient-reported outcome (PRO) measures to encourage patient–HCP communication, to help inform HCPs of matters important to patients and to aid both patients and HCPs in managing the disease. MSdialog is a web- and mobile-based software application that works with auto-injector devices and electronic autoinjectors, including the RebiSmart® 2.0 device (a handheld electronic Rebif® auto-injector with wireless data transmission capabilities, CE marked and available worldwide [excluding the US]) to collect and store real-time, point-of-administration adherence, clinician-reported outcomes and PRO data. MSdialog may provide a practical solution to support patient-proactive engagements and self-management, patient-centred care and participatory decision-making in clinical practice.

scholarly journals Patient Reported Outcome Measure in Atopic Dermatitis Patients Treated with Dupilumab: 52-Weeks Results

2021 ◽  
Author(s):  
Servando E. Marron ◽  
Lucia Tomas-Aragones ◽  
Carlos A. Moncin-Torres ◽  
Manuel Gomez-Barrera ◽  
Francisco Javier Garcia-Latasa de Aranibar
Keyword(s):  
Quality Of Life ◽  
Atopic Dermatitis ◽  
Clinical Practice ◽  
Stressful Life Events ◽  
Severe Disease ◽  
Patient Reported Outcome ◽  
Routine Clinical Practice ◽  
Severe Atopic Dermatitis ◽  
Patient Reported

Dupilumab is used to treat atopic dermatitis patients who have proven to be refractory to previous treatments. The aim of this study was to assess evolution and patient reported outcome measures in adult patients with moderate-to-severe atopic dermatitis treated with Dupilumab in routine clinical practice. The outcomes were evaluated and registered at baseline and weeks-16, 40 and 52. The variables evaluated were: diseases severity, pruritus, stressful life events, difficulty to sleep, anxiety and depression, quality of life, satisfaction, adherence to the treatment, efficacy and safety. Eleven patients were recruited between Nov 14th 2017 and Jan 16th 2018. Demographic variables: 90% Caucasian, 82% women. Clinical variables: Mean duration of AD =17.7 (±12.8), 91% had severe disease severity. At baseline, SCORAD mean score = 61.7 (±15.5); itch was reported by 100% of patients; itch Visual Analogue Scale mean range of 8 (6-10); HADS mean total score =13.9 (±5.5); DLQI mean score =13.3 (±8.3): EQ-5D-3L mean range = 57 (30-99). At week-52 there is a significant reduction of SCORAD scores, HADS total score and improved quality of life. ¡This study confirms that Dupilumab, used for 52-weeks under routine clinical practice, maintains the improved atopic dermatitis signs and symptoms obtained at week-16, with a good safety profile.

Assessing Patient-reported Quality of Life Outcomes in Vulva Cancer Patients: A Systematic Literature Review

2018 ◽  
Vol 28 (4) ◽  
pp. 808-817 ◽  
Author(s):  
Ligita Paskeviciute Froeding ◽  
Elfriede Greimel ◽  
Anne Lanceley ◽  
Anne Oberguggenberger ◽  
Claudia Schmalz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Phase 1 ◽  
Reporting Quality ◽  
Bowel Function ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Vulva Cancer

ObjectivesVulva cancer (VC) treatment carries a high risk of severe late effects that may have a negative impact on quality of life (QoL). Patient-reported outcome measures (PROMs) are increasingly used when evaluating disease- and treatment-specific effects. However, the adequacy of measures used to assess sequelae and QoL in VC remains unclear. The aims of the present study were to evaluate disease- and treatment-related effects as measured by PROMs in VC patients and to identify available VC-specific PROMs.Methods/MaterialsA systematic literature search from 1990 to 2016 was performed. The inclusion criterion was report of disease- and treatment-related effects in VC patients using PROMs in the assessment. Methodological and reporting quality was in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. This systematic review was performed as part of phase 1 of the development of a European Organisation for Research and Treatment of Cancer QoL questionnaire for VC patients.ResultsThe search revealed 2299 relevant hits, with 11 articles extracted including a total of 535 women with VC; no randomized controlled trials were identified. The selected studies exhibited great heterogeneity in terms of PROMs use. Twenty-one different instruments assessed QoL. Most of the questionnaires were generic. Different issues (sexuality, lymphedema, body image, urinary and bowel function, vulva-specific symptoms) were reported as potentially important, but the results were not systematically collected. Only one VC-specific questionnaire was identified but did not allow for assessment and reporting on a scale level.ConclusionsVulva cancer treatment is associated with considerable morbidity deteriorating QoL. To date, there is no validated PROM available that provides adequate coverage of VC-related issues. The study confirms the need for a VC-specific QoL instrument with sensitive scales that allows for broad cross-cultural application for use in clinical trials.

scholarly journals Translation and validation of two disease-specific patient-reported outcome measures (Bladder Cancer Index and FACT-Bl-Cys) in Dutch bladder cancer patients

2019 ◽  
Vol 3 (1) ◽  
Author(s):  
Charlotte T. J. Michels ◽  
Carl J. Wijburg ◽  
Inger L. Abma ◽  
J. Alfred Witjes ◽  
Janneke P. C. Grutters ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bladder Cancer ◽  
Clinical Practice ◽  
Cancer Patients ◽  
Radical Cystectomy ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Disease Specific

Abstract Background The Bladder Cancer Index (BCI) and Functional Assessment of Cancer Therapy-Bladder-Cystectomy (FACT-Bl-Cys) were developed to measure disease-specific health-related quality of life (HRQOL) in bladder cancer patients and patients treated with radical cystectomy, respectively. Both patient-reported outcome measures (PROMs) are frequently used in clinical practice, but are not yet validated according to the COSMIN criteria and not yet available in Dutch. Therefore, the aim of this study was to translate the BCI and FACT-Bl-Cys into Dutch and to evaluate their measurement properties according to the COSMIN criteria. Methods The BCI and FACT-Bl-Cys were translated into Dutch using a forward-backward method, and subsequently administered at baseline (pre-operatively) and 3 months post-operatively in bladder cancer patients who received a radical cystectomy. Validity (content and construct), reliability (internal consistency, test-retest reliability, and measurement error), floor and ceiling effects, and responsiveness were assessed according to the COSMIN criteria. Results Forward-backward translation encountered no particular linguistic problems. In total 260 patients completed the baseline measurement, while 182 patients completed the three-month measurement. Only a ceiling effect was identified for the BCI. Hypotheses testing for construct validity was satisfying, as 67% and 92% of the hypothesized correlations were confirmed. Structural validity was moderate for both measures, as confirmatory factor analyses showed limited fit. Reliability of both PROMs was good. The intraclass correlation coefficient (ICC) of the BCI domains ranged from 0.47 to 0.93, minimal value of Cronbach’s α was 0.70, smallest detectable change on group level (SDC group) ranged from 1.9 to 8.6. The ICC of the FACT-Bl-Cys domains ranged from 0.43 to 0.83, minimal value of Cronbach’s α was 0.77, SDC group was around 1. Only the FACT-Bl-Cys total score was found to be responsive to changes in generic quality of life. Conclusions The Dutch versions of the BCI and FACT-Bl-Cys were shown to be reliable and have good content validity. Structural validity was limited for both measures. Only the FACT-Bl-Cys total score was responsive to changes in generic HRQOL. Despite some limitations, both PROMs seem suitable for use in clinical practice and research.

scholarly journals Patient Reported Outcome Measure in Atopic Dermatitis Patients Treated with Dupilumab: 52-Weeks Results

Life ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. 617
Author(s):  
Servando E. Marron ◽  
Lucia Tomas-Aragones ◽  
Carlos A. Moncin-Torres ◽  
Manuel Gomez-Barrera ◽  
Francisco Javier Garcia-Latasa de Aranibar
Keyword(s):  
Quality Of Life ◽  
Atopic Dermatitis ◽  
Clinical Practice ◽  
Disease Severity ◽  
Stressful Life Events ◽  
Severe Disease ◽  
Patient Reported Outcome ◽  
Routine Clinical Practice ◽  
Patient Reported

Dupilumab is used to treat atopic dermatitis (AD) patients who have proven to be refractory to previous treatments. The aim of this study was to assess evolution and patient reported outcome measures in adult patients with moderate-to-severe AD treated with dupilumab in routine clinical practice. The outcomes were evaluated and registered at baseline and weeks 16, 40 and 52. The variables evaluated were: disease severity, pruritus, stressful life events, difficulty to sleep, anxiety and depression, quality of life, satisfaction, adherence to the treatment, efficacy and safety. Eleven patients were recruited between 14 Nov 2017 and 16 Jan 2018. Demographic variables: 90% Caucasian, 82% women. Clinical variables: Mean duration of AD = 17.7 (±12.8), 91% had severe disease severity. At baseline, SCORAD median (range) score = 69.2 (34.8–89.2); itch was reported by 100% of patients; itch visual analogue scale median (range) was 9 (6–10); HADS median (range) total score = 13 (5–21); DLQI mean score = 16 (2–27); EQ-5D-3L median (range) = 57 (30–99). At week-52 there was a significant reduction of SCORAD scores median (range) = 4.3 (0–17.1), HADS total score median (range) = 2 (0–10) and improved quality of life EQ-5D-3L median (range) = 89 (92–60). This study confirms that dupilumab, used for 52-weeks under routine clinical practice, maintains the improved atopic dermatitis signs and symptoms obtained at week 16, with a good safety profile.

scholarly journals Patient-Reported Outcome Measures in Endometriosis

2021 ◽  
Vol 10 (21) ◽  
pp. 5106
Author(s):  
Alba Nicolas-Boluda ◽  
Anne Oppenheimer ◽  
Jerome Bouaziz ◽  
Arnaud Fauconnier
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Digital Tools ◽  
Self Management ◽  
Patient Centered ◽  
Patient Reported

Patient Reported Outcome Measures (PROM) evoke measurements that allow capturing patients’ perspectives on their condition. In endometriosis care, physicians’ understanding of the effect of the disease and the treatment on patients is often poor. The use of PROMs in endometriosis clinical practice can facilitate patient-provider communication and the implementation of patient-centered care, improve patients’ quality of life, as well as provide a tool for patients’ self-management of the disease. Today, PROMs are extensively used in research and clinical trials, however they are barely used in clinical practice. The development of digital tools facilitating capturing PROMs can contribute to their use by physicians in routine endometriosis care. However, all PROMs are not adapted to be used in routine care in the context of endometriosis. The objective of this study was to present a catalogue of available PROMs for routine endometriosis care and evaluate them according to selected criteria. To do so, we explored the different PROMs currently in the literature. Consequently, 48 PROM were identified as tools used to evaluate various dimensions of the impact of endometriosis on patients. The selected PROMs were evaluated for their potential to be used as a standard in clinical practice in endometriosis. The selected catalogue of PROMs is the starting point for the integration of digital tools to capture PROMs and the development of patient-centered dashboards to be used by patients and clinicians in endometriosis care and self-management to improve care processes, patient satisfaction, quality of life, and outcomes.

scholarly journals A Descriptive Correlational Study to Evaluate Three Measures of Assessing Upper Extremity Function in Individuals with Multiple Sclerosis

2021 ◽  
Vol 2021 ◽  
pp. 1-8
Author(s):  
Aman Saini ◽  
Audrey Zucker-Levin ◽  
Benjamin McMillan ◽  
Pawan Kumar ◽  
Sarah Donkers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Upper Extremity ◽  
Patient Reported Outcome ◽  
Correlational Study ◽  
Moderate Correlation ◽  
Extremity Function ◽  
Patient Reported ◽  
Upper Extremity Function

Background. Activities of daily living and quality of life (QOL) are hindered by upper extremity (UE) impairments experienced by individuals with multiple sclerosis (iMS). The Nine-Hole Peg Test (9-HPT) is most frequently used to measure UE function. However, it does not measure peoples’ ability to perform routine tasks in daily life and may not be useful in iMS who cannot pick up the pegs utilized in the 9-HPT. Therefore, we evaluated three measures to explore a more comprehensive assessment of UE function: Upper Extremity Function Scale (UEFS), Action Research Arm Test (ARAT), and the 9-HPT. The objectives were to quantitatively assess the relationship between these measures of UE function, understand if the measures correlate with QOL as calculated by the MS Quality of Life-54 (MSQOL-54), and to determine differences in the measures based on employment status. Methods. 112 (79 female) iMS were prospectively recruited for this descriptive correlational study. Inclusion criteria were as follows: confirmed diagnosis of MS or clinically isolated syndrome, age ≥ 18 years, and ability to self-consent. All statistical analyses including Spearman’s correlation coefficient ( r s ) and Kruskal-Wallis tests were performed using SPSS. Results. A moderate correlation ( r s = − 0.51 ; p < 0.001 ) was found between the ARAT and 9-HPT scores for the more impaired hand. Likewise, a moderate correlation was found between UEFS and the physical health composite scores (PHCSs) of MSQOL-54 ( r s = − 0.59 ; p < 0.001 ). Finally, performances on ARAT, 9-HPT, and UEFS differed between the employed individuals and those on long-term disability ( p = 0.007 , p < 0.001 , and p = 0.001 ). Conclusion. The UEFS moderately correlated with the QOL measure, and considering the UESF is a patient-reported outcome, it could be used to complement routinely captured measures of assessing UE function. Further study is warranted to determine which measure, or combination of measures, is more sensitive to changes in UE function over time.

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