The unidimensional self-efficacy scale for MS (USE-MS): developing a patient based and patient reported outcome

2012 ◽  
Vol 18 (9) ◽  
pp. 1326-1333 ◽  
Author(s):  
CA Young ◽  
RJ Mills ◽  
J Woolmore ◽  
CP Hawkins ◽  
A Tennant
Keyword(s):  
Self Efficacy ◽  
Demographic Data ◽  
Well Being ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Treatment Regimes ◽  
Resilience Scale ◽  
Patient Reported ◽  
Gender Education

Background: Self-efficacy concerns the individual’s belief that he or she is capable of performing a certain task and producing a desired effect, i.e. it reflects the person’s perceptions of their capability for specific tasks, as distinct from their actual ability. Self-efficacy has been shown to influence motivation, psychological well-being, adherence with treatment regimes and quality of life in multiple sclerosis and other conditions. Objective: To develop a unidimensional scale of MS self-efficacy with robust psychometric properties, suitable for patient self report. Methods: A questionnaire pack covering three MS self-efficacy scales, the Dispositional Resilience Scale and demographic data was posted to MS patients from two MS databases. Data underwent Rasch analysis. Results: Response rate was 309/600 (51.5%). None of the existing MS self-efficacy scales were unidimensional. A new 12-item scale, created by combining items from our two scales, was shown to fit the Rasch model, was unidimensional, and invariant for gender, education and disease duration. Conclusion: The Unidimensional Self-Efficacy scale for MS (USE-MS) provides a simple summated scale for an ordinal estimate of a persons’ self efficacy. A transformation to interval scaling is available for use in the calculation of change scores and effect sizes.

Significance of patient-reported outcomes for occupational resumption and quality of life after cardiac rehabilitation

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
A Salzwedel ◽  
I Koran ◽  
E Langheim ◽  
A Schlitt ◽  
J Nothroff ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Performance ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Funding Source ◽  
Patient Reported ◽  
Returning To Work

Abstract Introduction Comprehensive cardiac rehabilitation (CR) programs based on the bio-psycho-social approach of the international classification of functioning and disease are carried out to achieve improved prognosis, superior health-related quality of life (HRQL) and social integration. We aimed to identify predictors of returning to work (RTW) and HRQL among cardiovascular risk factors and physical performance as well as patient-reported outcome measures (PROMs) modifiable during CR. Methods We designed a prospective observational multi-center study and enrolled 1,586 patients (2017/18) in 12 German rehabilitation centers regardless of their primary allocation diagnoses (e.g. acute myocardial infarction (AMI), coronary artery bypass grafting (CABG), coronary artery disease (CAD), valvular disease). Besides general data (e.g. age, gender, diagnoses), parameters of risk factor management (e.g. smoking, lipid profile, hypertension, lifestyle change motivation), physical performance (e.g. maximum exercise capacity, endurance training load, 6-min walking distance), and PROMs (e.g. depression, heart-focused anxiety, HRQL, subjective well-being, somatic and mental health, pain, general self-efficacy, pension desire as well as self-assessment of occupational prognosis using several questionnaires) were documented at CR admission and discharge. 6 months after discharge, status of RTW and HRQL (SF-12) were captured by a follow-up (FU) survey and analyzed in multivariable regression models with multiple imputation of missing values. Results Out of the study participants, 1,262 patients (54±7 years, 77% men) responded to the follow-up survey and could be analyzed regarding the outcome parameters. Most of them were assigned to CR primarily due to AMI (40%) or CAD without myocardial infarction (18%), followed by heart valve diseases in 12% of patients and CABG (8%). 864 patients (69%) returned to work within the follow-up period. Pension desire, negative self-assessed occupational prognosis, heart-focussed anxiety, major life events, smoking and heart failure were negatively associated with RTW, while higher endurance training load, HRQL and work stress were positively associated (Figure 1). HRQL after 6 months was determined more by PROMs (e.g. pension desire, heart-focused anxiety, physical/mental HRQL in SF-12, physical/mental health in indicators of rehab-status questionnaire (IRES-24), stress, well-being in the World Health Organization well-being index and self-efficacy expectations) than by clinical parameters or physical performance. Conclusions Patient-reported outcome measures predominantly influenced RTW and HRQL in heart-disease patients, whereas patients' pension desire and heart-focussed anxiety had a dominant impact on all investigated endpoints. Therefore, the multi-component CR approach focussing on psychosocial support is crucial for subjective health prognosis and occupational resumption. Figure 1. Predictors of returning to work Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): German pension insurance

scholarly journals Patient-Reported Outcome Measures (PROMs) in Pediatric Non-Malignant Hematology: A Systematic Review

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2180-2180
Author(s):  
Robert J Klaassen ◽  
Julia Y. Kinahan ◽  
Johann M. I. Graham ◽  
Yamilée V. Hébert ◽  
Katie O'Hearn
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Clinical Environment ◽  
Patient Reported ◽  
Disease Specific

Introduction: Patient reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without interpretation by healthcare professionals. As such, they allow patient concerns about a variety of healthcare issues to be identified and addressed in an efficient and actionable manner. PROMs can be generic, with questions relevant to multiple disease groups or disease-specific, with questions targeting the symptoms, limitations, and feelings common to the disease group. This systematic review identified generic and disease-specific PROMs for monitoring symptoms and health-related quality of life (HRQoL) in 4 pediatric non-malignant hematologic disease groups: thalassemia, hemophilia, immune thrombocytopenia (ITP), and sickle cell disease (SCD). Methods: Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that either validated or used PROMs as an outcome measure in the four disease groups. Articles were excluded when <30% of the population was pediatric (<18 years), when the study setting was inpatient, when the tool had not been validated, or when the article did not report the use of a PROM for monitoring symptoms or HRQoL. Notably, hemophilia records published prior to 2016 were not screened as a systematic review by Limperg et al. (2017) identified validated PROMs in the pediatric hemophilia population and was used to include relevant articles. Results: The search identified 1176 unique records, with 902 records remaining for title and abstract screening after removal of 274 hemophilia articles published prior to the systematic review. Including hemophilia records identified from the 2017 review, 217 articles met inclusion criteria incorporating 107 generic and 20 disease-specific PROMs. Of the generic tools, the most frequent categories identified include psychological well-being (26 tools), general quality of life (19 tools), and family impact (19 tools). The most frequently used tool was the PedsQL 4.0 Generic Core Scales (66 studies), appearing 33 times in SCD, 25 times in thalassemia, 5 times in ITP, and 3 times in hemophilia. Other commonly used generic tools include the Short Form Health Survey, Child Health Questionnaire, PROMIS Health Measures, and Child Behaviour Checklist (Table). Disease-specific tools identified in the review include the PedsQL SCD Module, Kids ITP Tool, Haemo-QoL, CHO-KLAT, and TranQol (Table). In addition, 10 studies reported on pain diaries and 9 of these studies were SCD focused, the other being hemophilia focused. Conclusion: This systematic review identified several generic and disease-specific PROMs that have been used in pediatric non-malignant hematology. Although generic tools have been used more frequently, many disease-specific tools have been validated and are available for use in the clinical environment. We are currently conducting focus groups with patients, parents, and clinicians to determine the optimal choice of tools for monitoring symptoms and HRQoL in the pediatric non-malignant clinical environment. Disclosures No relevant conflicts of interest to declare.

scholarly journals Patient-reported outcome measures suitable for quality of life/well-being assessment in multisectoral, multinational and multiperson mental health economic evaluations

2021 ◽  
pp. ebmental-2021-300334
Author(s):  
Agata Łaszewska ◽  
Timea Mariann Helter ◽  
Anna Nagel ◽  
Nataša Perić ◽  
Judit Simon
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Health Economic ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Economic Evaluations ◽  
Meta Data ◽  
Patient Reported

QuestionThe aim was to systematically collate and synthesise existing, publicly available patient-reported outcome measure (PROM) information suitable for quality of life (QOL)/well-being measurement in mental health economic evaluations, with specific focus on their applicability in multisectoral, multinational, multiperson economic evaluations and to develop an electronic PROM compendium with meta-data.Study selection and analysisA systematic literature search for non-disease-pecific PROMs and their versions suitable for the measurement of QOL/well-being or recovery was conducted from 2008 to February 2020. Six criteria were applied to judge their suitability in multisectoral, multinational, multiperson economic evaluations: (i) availability of separate adult and child/adolescent versions, (ii) availability of a proxy-completion option, (iii) assessing outcomes beyond health, (iv) availability of translations (≥2 language versions), (v) availability of a preference-based valuation, (vi) availability of value sets in more than one country.FindingsThe final ProgrammE in Costing, resource use measurement and outcome valuation for Use in multisectoral National and International health economic evaluAtions (PECUNIA) PROM-MH Compendium includes 204 unique scales, out of which 88 are individual instruments, while the remaining 116 scales belong to 46 PROM families with more than one distinctive version. Out of the total 134 individual PROMs/PROM families, 72% have at least two language versions, 8% measure broader well-being beyond health-related QOL, 11% have preference-based valuation, with multiple country sets available for 60% of these. None of the identified PROMs met all six proposed criteria.ConclusionsThe PECUNIA PROM-MH Compendium provides a unique overview of the relevant PROMs and their linked meta-data, and should be a helpful tool when choosing a suitable instrument for future mental health economic evaluations.

scholarly journals [REiNS] Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

Neurology ◽  
2021 ◽  
pp. 10.1212/WNL.0000000000012421
Author(s):  
Pamela L. Wolters ◽  
Ana-Maria Vranceanu ◽  
Heather L. Thompson ◽  
Staci Martin ◽  
Vanessa Leigh Merker ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Neurofibromatosis Type ◽  
Patient Reported Outcome ◽  
Self Report ◽  
World Health ◽  
World Health Organization Quality ◽  
Patient Reported ◽  
Disease Specific

Objective:To review and recommend patient-reported outcome (PRO) measures assessing multidimensional domains of quality of life (QOL) to use as clinical endpoints in medical and psychosocial trials for children and adults with neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis.Methods:The PRO working group of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration used systematic methods to review, rate, and recommend existing self-report and parent-report PRO measures of generic and disease-specific QOL for neurofibromatosis (NF) clinical trials. Recommendations were based on four main criteria: patient characteristics, item content, psychometric properties, and feasibility.Results:The highest rated generic measures were 1) the Pediatric Quality of Life Inventory (PedsQL™) Generic Core Scales for NF clinical trials for children or for children through adults, 2) the Functional Assessment of Cancer Therapy-General (FACT-G) for adult medical trials, and 3) the World Health Organization Quality of Life-BREF (WHOQOL-BREF) for adult psychosocial trials. The highest rated disease-specific measures were 1) the PedsQL NF1 Module for NF1 trials, 2) the NF2 Impact on Quality of Life (NFTI-QOL) Scale for NF2 trials, and 3) the Penn Acoustic Neuroma Quality of Life (PANQOL) Scale for NF2 trials targeting vestibular schwannomas. To date, there are no disease-specific tools assessing multidimensional domains of QOL for schwannomatosis.Conclusions:The REiNS Collaboration currently recommends these generic and disease-specific PRO measures to assess multidimensional domains of QOL for NF clinical trials. Additional research is needed to further evaluate the use of these measures in both medical and psychosocial trials.

scholarly journals Systematic Review of Development and Content Validity of Patient-reported Outcome Measures in Inflammatory Bowel Disease: Do We Measure What We Measure?

2020 ◽  
Vol 14 (9) ◽  
pp. 1299-1315 ◽  
Author(s):  
Emma M van Andel ◽  
Brechtje D M Koopmann ◽  
Femke Crouwel ◽  
Casper G Noomen ◽  
Nanne K H de Boer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Outcome Measures ◽  
Content Validity ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Patient Reported ◽  
Validity Studies

Abstract Background and Aims Patient-reported outcome measures are increasingly important in daily care and research in inflammatory bowel disease [IBD]. This study provides an overview of the content and content validity of IBD-specific patient-reported outcome measures on three selected constructs. Methods Databases were searched up to May 2019 for development and/or content validity studies on IBD-specific self-report measures on health-related quality of life, disability, and self-report disease activity in adults. Evidence was synthesised on content validity in three aspects: relevance, comprehensiveness, and comprehensibility following the COnsensus-based Standards for the selection of health Measurement INstruments methodology. Questionnaire items were organised in themes to provide an overview of important aspects of these constructs. Results For 14/44 instruments, 25 content validity studies were identified and 25/44 measures had sufficient content validity, the strongest evidence being of moderate quality, though most evidence is of low or very low quality. The Crohn’s Life Impact Questionnaire and IBD questionnaire-32 on quality of life, the IBD-Control on disease activity, and the IBD Disability Index Self-Report and its 8-item version on disability, have the strongest evidence of sufficient relevance, comprehensiveness, and comprehensibility, ranging from moderate to very low quality. A fair number of recurring items themes, possibly important for the selected constructs, was identified. Conclusions The body of evidence for content validity of IBD-specific health-related quality of life, self-report disease activity, and disability self-report measures is limited. More content validity studies should be performed after reaching consensus on the constructs of interest for IBD, and studies should involve patients.

Effects of sunitinib and pazopanib on patients physical, social, and emotional function: Result of a prospective patients reported outcome tool.

2019 ◽  
Vol 37 (7_suppl) ◽  
pp. 667-667 ◽  
Author(s):  
Prantik Das ◽  
Akram Ali ◽  
Karen Simmonds ◽  
Lesley Mckenna
Keyword(s):  
Quality Of Life ◽  
Treatment Options ◽  
Well Being ◽  
Patient Reported Outcome ◽  
Emotional Wellbeing ◽  
Social And Emotional ◽  
Patient Reported ◽  
C 30 ◽  
Outcome Tool

667 Background: Sunitinib and pazopanib are are effective treatment options for metastatic Renal cell carcinoma (mRCC) and both may impair patient’s quality of life (QOL). There has been no direct comparison between these agents and their effect on these domains. Methods: A prospective study of mRCC patients who had received Sunitinib or Pazopanib as a first line treatment was conducted. A set of questionnaires has been developed in-house, influenced by existing recognised tools, such as EORTC-C 30 and PHQ-9, and is tailored to focus on relevant QoL issues patients face. This questionnaire named as Patient reported outcome tool. They primarily relate to physical, emotional and social functioning in the quality of life of patients. Each category has 4 questions. The questions are quite generic and allow patients to apply them to what’s important in their lives. Answers are on a scale of 0-10. The purpose of the questionnaire is to assess a balance of physical, cognitive and independence related aspects of their life over the course of their treatment. All patients are asked to complete the baseline questionnaire and then in every clinical visit. Results: Data were collected prospectively of metastatic RCC patients who had received Sunitinib or Pazopanib from May 2017 to Aug 2018. Total 45 patients were included, 23 received Pazopanib and 22 were on Sunitinib. There was a higher rate of significant worsening for the physical well-being subscale for Sunitinib versus Pazopanib. Patients on Sunitinib reported worsening tiredness, skin problems and sleep disturbance. Socially, patients on Sunitinib reported more closer to family, better interaction with friends and more motivated to go out. Problem with feeling sad, fear of death and anxiousness were more pronounced on Pazopanib arm. Conclusions: Our study suggested that there are marked differences between Sunitinib vs Pazopanib and their effects on patients physical, emotional and social wellbeing. Physical function was more influenced by sunitnib while pazopanib has more effect emotional wellbeing. Further studies are warranted to confirm these findings.

Adaptation and cross-cultural validation of the Spanish version of the Thyroid-Related Quality-of-Life Patient-Reported Outcome (ThyPRO) questionnaire

2018 ◽  
Author(s):  
Lleo Ana Maria Gonzalez ◽  
Mauro Boronat Cortes ◽  
Ulla Feldt-Rasmussen ◽  
Carlos Rodriguez Perez ◽  
AEse Krogh Rasmussen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Spanish Version ◽  
Patient Reported ◽  
Related Quality ◽  
Cultural Validation

scholarly journals An assessment of the use of patient reported outcome measurements (PROMs) in cancers of the pelvic abdominal cavity: identifying oncologic benefit and an evidence-practice gap in routine clinical practice

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Miss Charlotte L. Moss ◽  
Ajay Aggarwal ◽  
Asad Qureshi ◽  
Benjamin Taylor ◽  
Teresa Guerrero-Urbano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Abdominal Cavity ◽  
Patient Reported Outcome ◽  
Oncologic Outcomes ◽  
Review Of The Literature ◽  
Outcome Measurements ◽  
Patient Reported ◽  
Cancer Setting

Abstract Background Patient reported outcome measurements (PROMs) are emerging as an important component of patient management in the cancer setting, providing broad perspectives on patients’ quality of life and experience. The use of PROMs is, however, generally limited to the context of randomised control trials, as healthcare services are challenged to sustain high quality of care whilst facing increasing demand and financial shortfalls. We performed a systematic review of the literature to identify any oncological benefit of using PROMs and investigate the wider impact on patient experience, in cancers of the pelvic abdominal cavity specifically. Methods A systematic review of the literature was conducted using MEDLINE (Pubmed) and Ovid Gateway (Embase and Ovid) until April 2020. Studies investigating the oncological outcomes of PROMs were deemed suitable for inclusion. Results A total of 21 studies were included from 2167 screened articles. Various domains of quality of life (QoL) were identified as potential prognosticators for oncologic outcomes in cancers of the pelvic abdominal cavity, independent of other clinicopathological features of disease: 3 studies identified global QoL as a prognostic factor, 6 studies identified physical and role functioning, and 2 studies highlighted fatigue. In addition to improved outcomes, a number of included studies also reported that the use of PROMs enhanced both patient-clinician communication and patient satisfaction with care in the clinical setting. Conclusions This review highlights the necessity of routine collection of PROMs within the pelvic abdominal cancer setting to improve patient quality of life and outcomes.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

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