Validity of the PROMIS-29 in a large Australian cohort of patients with systemic sclerosis

2017 ◽  
Vol 2 (3) ◽  
pp. 188-195 ◽  
Author(s):  
Kathleen Morrisroe ◽  
Wendy Stevens ◽  
Molla Huq ◽  
Joanne Sahhar ◽  
Gene-Siew Ngian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Construct Validity ◽  
Short Form ◽  
Good Alternative ◽  
Measurement Information ◽  
Internal Reliability ◽  
Sf 36 ◽  
Patient Reported

Background We aimed to evaluate the construct validity of the Patient-Reported Outcomes Measurement Information System 29 (PROMIS-29) in Australian systemic sclerosis (SSc) patients. Methods SSc patients, identified through the Australian Scleroderma Cohort Study database, completed two quality-of-life instruments concurrently, the PROMIS-29 and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). The construct validity of the PROMIS-29 was assessed by the correlations between the PROMIS-29 and the SF-36 and Health Assessment Questionnaire Disability Index (HAQ-DI). Cronbach's alpha was used to test the internal reliability of all instruments in Australian SSc patients and non-parametric correlation, including Spearman's correlation, was used to test the construct validity of PROMIS-29 against the SF-36 and HAQ-DI. Results A total of 477 completed questionnaires were returned, equating to a response rate of 59.6%. The mean (±SD) age of respondents at the time of the survey was 64.1 (±11.1) years. They were predominantly female (87.4%), with limited disease subtype (lcSSc) (77.8%) and long disease duration from onset of first non-Raynaud's phenomenon symptom at the time of survey (10.9 ± 11.1 years). For the correlation analysis between the PROMIS-29 and the legacy instruments, all Spearman correlation coefficients were in the logical direction and highly significant suggesting that the PROMIS-29 is a good alternative to other validated measures of disease burden. Conclusions Our study indicates that the PROMIS-29 questionnaire is a valid instrument for measuring health-related quality of life in Australian females with lcSSc of long duration.

Quality of Life in Patients with Systemic Sclerosis Compared to the General Population and Patients with Other Chronic Conditions

2009 ◽  
Vol 36 (4) ◽  
pp. 768-772 ◽  
Author(s):  
MARIE HUDSON ◽  
BRETT D. THOMBS ◽  
RUSSELL STEELE ◽  
PANTELIS PANOPALIS ◽  
EVAN NEWTON ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
General Population ◽  
Chronic Diseases ◽  
Chronic Conditions ◽  
Short Form ◽  
Mental Component Summary Score ◽  
Population Norms ◽  
Sf 36

Objective.Systemic sclerosis (SSc) affects multiple physical, psychological, and social domains and is associated with impaired health-related quality of life (HRQOL).We compared the HRQOL of SSc patients with individuals in the general population and patients with other common chronic diseases.Methods.HRQOL of SSc patients in the Canadian Scleroderma Research Group registry was measured using version 2 of the Medical Outcomes Trust Short Form-36 (SF-36). Results were compared to US general population norms and scores reported for patients with other common chronic diseases, namely heart disease, lung disease, hypertension, diabetes, and depression.Results.SF-36 scores were available for 504 SSc patients (86% women, mean age 56 yrs, mean disease duration since onset of first non-Raynaud’s manifestation of SSc 11 yrs). The greatest impairment in SF-36 subscale scores appeared to be in the physical functioning, general health, and role physical domains. SF-36 subscale and summary scores in SSc were significantly worse compared to US general population norms for women of similar ages, except for mental health and mental component summary score, which were not significantly different, and were generally comparable to or worse than the scores of patients with other common chronic conditions.Conclusion.HRQOL of patients with SSc is significantly impaired compared to that of the general population and is comparable to or worse than that of patients with other common chronic conditions.

Comparison of Quality of Life in Clinically Isolated Syndrome Patients Who Convert and Do Not Convert to Clinically Definite Multiple Sclerosis

2009 ◽  
Vol 11 (1) ◽  
pp. 17-24 ◽  
Author(s):  
Deborah M. Miller ◽  
Craig Kollman ◽  
Andrea Kalajian ◽  
Paul W. O'Connor ◽  
R. Philip Kinkel
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Short Form ◽  
Clinically Isolated Syndrome ◽  
Sf 36 ◽  
Initial Symptoms ◽  
Patient Reported ◽  
Definite Multiple Sclerosis ◽  
Clinically Definite Multiple Sclerosis

A secondary analysis was undertaken to compare patient-reported outcomes (PROs) of individuals who did and did not convert to clinically definite multiple sclerosis (CDMS) approximately 5 years after their first clinically isolated syndrome (CIS). Patients included in the analysis were participating in a long-term extension (called CHAMPIONS) of the Controlled High-Risk Avonex® Multiple Sclerosis Prevention Study (CHAMPS). The Multiple Sclerosis Quality of Life Inventory (MSQLI), a battery including the Short Form Health Status Survey (SF-36) and nine disease-specific scales, was administered to participants 5 years after their initial symptoms suggestive of MS (randomization into the CHAMPS study). Of 203 CHAMPIONS patients, 188 (93%) completed the MSQLI at enrollment into this extension study. Of these, 79 (42%) converted to CDMS. Statistically significant differences (P < .001) between those who did and did not convert to CDMS were found for 4 of the 11 MSQLI scales: the SF-36 Physical Component Summary, the Modified Fatigue Impact Scale, the Pain Effects Scale, and the Bladder Control Scale. Trends not meeting our criteria for statistical significance (P > .001 but < .01) were observed for the SF-36 Mental Component Summary, the Perceived Deficits Questionnaire, and the Mental Health Inventory. SF-36 scores for patients not converting to CDMS over 5 years were similar to those reported for age-matched normal controls. No other demographic or disease-related factors were associated with these PROs. When stratified by Expanded Disability Status Scale score, patients who converted to CDMS demonstrated statistically significant differences on the same four scales defined above that differentiated those who did and did not convert to CDMS. These data show that individuals who have CDMS but limited disability demonstrate clear evidence of diminished health-related quality of life.

scholarly journals Penilaian Properti Psikometrik Instrumen Kualitas Hidup (HRQol) pada Populasi Umum: Tinjauan Sistematik

2019 ◽  
Vol 9 (2) ◽  
Author(s):  
Restu Nur Hasanah Haris ◽  
Rahmat Makmur ◽  
Tri Murti Andayani ◽  
Susi Ari Kristina
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Construct Validity ◽  
Psychometric Properties ◽  
Short Form ◽  
Internal Consistency Reliability ◽  
Ceiling Effect ◽  
Validity And Reliability ◽  
Sf 36

Quality of life (HRQoL) is a measure of a person's health in physical, spiritual, and emotional, and role functions in the society. Measurement of quality of life (HRQoL) is an important thing to understand and evaluate. Measurements are carried out not only on patients but also on the general population with the use of specific or generic instruments. The instrument used requires a psychometric properties test to ensure its validity and reliability. This article aims to conduct a systematic review of the psychometric properties of quality of life (HRQoL) instruments in the general population. Articles were collected in December 1st to 5th, 2018, from Pubmed and Google Scholar. The assessment was carried out using the checklist properties according to the cohen criteria and included the content validity, construct validity, internal consistency reliability, test-retest, ceiling effect and the level of credibility of the instruments. Among 80 articles obtained there were 24 articles that fulfilled the inclusion criteria. Short Form-36 (SF-36) instrument is the most widely used instrument in measuring the quality of life in the general population (26.6%). Some instruments have not been tested according to the criteria, while almost all instruments show a good level of validation of construct validity using convergent and discriminat validity with cronbach alpha values > 0.7. Test-retest reliability provides a good correlation. Some instruments show a ceiling effect. According to the assessment, the SF-36, SF-6D, EQ-5D, SF-12 and PedsQoL instruments are considered as established instruments. Further validation testing is needed to provide and support the measurement of subsequent quality of life (HRQoL) instruments.

scholarly journals Postoperative Assessment of the Quality of Life in Patients with Colorectal Endometriosis

2021 ◽  
Vol 10 (21) ◽  
pp. 5211
Author(s):  
Claudia Mehedintu ◽  
Francesca Frincu ◽  
Lacramioara Aurelia Brinduse ◽  
Andreea Carp-Veliscu ◽  
Elvira Bratila ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Bodily Pain ◽  
Validity And Reliability ◽  
Good Reliability ◽  
Colorectal Endometriosis ◽  
Sf 36 ◽  
Patient Reported ◽  
Role Limitation

Morbidity and mortality alone are not comprehensive measures of evaluating the benefits of surgical interventions in endometriosis patients, thus, subjective patient-reported instruments are required. The 36-tem Short Form Survey (SF-36) is a Health-Related Quality of Life (HRQoL) instrument that has not been validated yet for women with endometriosis. The aims of this study are to evaluate the validity and reliability of the SF-36 in patients with colorectal endometriosis and to compare the HRQoL before and after surgery, using different Quality of Life (QoL) instruments: the Gastrointestinal QoL Index (GIQLI) and Knowles–Eccersley–Scott Symptom Questionnaire (KESS). We conducted a retrospective study using prospectively recorded data in the North-West Inter-Regional Female Cohort for Patients with Endometriosis (CIRENDO) database. The assessment was performed on four hundred and eighty-eight patients before and 12 months after the surgery. Preoperative and postoperative item-internal consistency and Cronbach’s α proved evidence for good reliability showing that SF-36 is a useful instrument for endometriosis patients’ QoL. The domains of Role (limitation) physical, Bodily pain and Role (limitation) emotional showed the most remarkable improvements (difference before vs. one year after surgery) with p < 0.001. Our data show that SF-36 has validity and reliability and can be used in patients with endometriosis. Surgery improved the QoL and digestive function.

Functional and Quality of Life Outcomes of Surgery for Degenerative Cervical Myelopathy: a Quality Improvement Study

2020 ◽  
Author(s):  
Babak Mirzashahi ◽  
Pejman Mansouri ◽  
Arvin Najafi ◽  
Saeed Besharati ◽  
Mohammad Taha Kouchakinejad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Myelopathy ◽  
Short Form ◽  
Sf 36 ◽  
Patient Reported ◽  
Vas Scores ◽  
One Year ◽  
Degenerative Cervical Myelopathy

Background: This study aimed to determine the outcome of surgical treatments in patients with degenerative cervical myelopathy (DCM). During one-year follow-up period, we evaluated patient-reported functional and quality of life (QOL) measures.   Methods: In a retrospective single-center study, we collected data of patients with DCM who underwent cervical fusion surgeries in Imam Khomeini Hospital, Tehran, Iran, from 2011 to 2015. Patients underwent single or multi-level anterior cervical discectomy and fusion (ACDF), anterior cervical corpectomy and fusion (ACCF), or posterior laminectomy and fusion. We utilized patient-reported assessments including Short Form 36 (SF-36), Visual Analogue Scale (VAS), Neck Disability Index (NDI), and Nurick grade. Follow-up was performed at 6 weeks, 3 months, 6 months, and 12 months post-operatively to assess the outcome of surgery.   Results: Ninety patients (56 men, 34 women) with a mean age of 54.1 (27-87) years were included. Comparison of pre- and post-operative scores showed significant improvement in SF-36 parameters, VAS, NDI, and Nurick grade (P < 0.001). Also, women’s VAS scores improved more than men's VAS scores during the follow-up period (P < 0.050). Age and type of surgery did not significantly affect the SF-36 parameters, VAS, NDI, and Nurick grade (P > 0.05).   Conclusions: Cervical surgeries in patients with different severity of DCM can improve different aspects of QOL during one-year after surgery

Quality of Life and Disability in Patients with Treatment-Failure Gout

2009 ◽  
Vol 36 (5) ◽  
pp. 1041-1048 ◽  
Author(s):  
MICHAEL A. BECKER ◽  
H. RALPH SCHUMACHER ◽  
KATY L. BENJAMIN ◽  
PETER GOREVIC ◽  
MARIA GREENWALD ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Treatment Failure ◽  
Patient Reported Outcomes ◽  
Short Form ◽  
Clinical Status ◽  
Damage Index ◽  
Sf 36 ◽  
Patient Reported ◽  
Gout Flares

Objective.The relationship between self-reported quality of life and disability and disease severity was evaluated in subjects with treatment-failure gout (n = 110) in a prospective, 52-week, observational study.Methods.Subjects had symptomatic crystal-proven gout of at least 2 years’ duration and intolerance or refractoriness to conventional urate-lowering therapy. Serum uric acid (sUA) concentration, swollen and tender joint counts, frequency and severity of gout flares, tophus assessments, comorbidities, and patient-reported outcomes data [Medical Outcomes Study Short Form-36 (SF-36), Health Assessment Questionnaire-Damage Index] were collected. Analyses included correlations of patient-reported outcomes with clinical variables and changes in clinical status.Results.Mean age of study subjects was 59 years. Mean scores on SF-36 physical functioning subscales were 34.2–46.8, analogous to persons aged ≥ 75 years in the general population. Subjects with more severe gout at baseline had worse health-related quality of life (HRQOL) in all areas (p < 0.02 for all measures), compared to patients with mild-moderate disease. Number of flares reported in past year, number of tender joints, swollen joints, and tophi correlated significantly with some or all HRQOL and disability measures. sUA was not significantly correlated with any HRQOL or disability measure. Subjects with comorbidities experienced worse physical, but not mental, functioning.Conclusion.Severe gout is associated with poor HRQOL and disability, especially for patients who experience more gout flares and have a greater number of involved joints. Subject perceptions of gout-related functioning and pain severity appear to be highly sensitive indicators of HRQOL and disability.

scholarly journals Longitudinal Evaluation of PROMIS-29 and FACIT-Dyspnea Short Forms in Systemic Sclerosis

2014 ◽  
Vol 42 (1) ◽  
pp. 64-72 ◽  
Author(s):  
Monique E. Hinchcliff ◽  
Jennifer L. Beaumont ◽  
Mary A. Carns ◽  
Sofia Podlusky ◽  
Krishna Thavarajah ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Health Status ◽  
Physical Function ◽  
Short Form ◽  
Functional Limitations ◽  
Measurement Information ◽  
Change Scores ◽  
Short Forms ◽  
Sf 36 ◽  
Patient Reported

Objective.To assess the sensitivity of the Patient-Reported Outcomes Measurement Information System 29-item Health Profile (PROMIS-29) and the Functional Assessment of Chronic Illness Therapy-Dyspnea 10-item short form (FACIT-Dyspnea) for measuring change in health status and dyspnea in systemic sclerosis (SSc).Methods.One hundred patients with SSc completed the PROMIS-29, FACIT-Dyspnea, and traditional instruments [Medical Research Council Dyspnea Score, St. George’s Respiratory Questionnaire (SGRQ), Health Assessment Questionnaire-Disability Index (HAQ-DI), and Medical Outcomes Study Short Form-36 (SF-36)] at baseline and 1-year visits. PROMIS-29, FACIT-Dyspnea, and traditional instrument change scores were compared across composite modified Medsger Disease Severity and modified Rodnan Skin score (mRSS) change groups.Results.Moderately high Spearman correlation coefficients were observed between FACIT-Dyspnea and SGRQ (r = 0.57), FACIT-Dyspnea functional limitations and SF-36 physical component summary (PCS; r = 0.51), PROMIS-29 physical functioning and HAQ-DI (r = 0.50), and SF-36 PCS (r = 0.52) change scores. In most validity comparisons, PROMIS-29, FACIT-Dyspnea, HAQ-DI, and SF-36 scores performed similarly. While PROMIS-29 covers more content areas than SF-36 (e.g., sleep), it may do so at the expense of responsiveness of its 4-item physical function scale as compared to the multiitem-derived SF-36 PCS. Statistically significant increases in SF-36 role physical (p = 0.01) and physical component scale (p = 0.016), but not PROMIS-29, were observed in patients with mRSS improvement.Conclusion.PROMIS-29 and FACIT-Dyspnea are valid instruments to measure health status and dyspnea in patients with SSc. In physical function assessment, longer PROMIS short forms or computer adaptive testing should be considered to improve responsiveness to the effect of skin disease changes on physical function in patients with SSc.

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