scholarly journals Development and validation of the disease-specific QOL-CD quality of life questionnaire for patients with Cushing’s disease

2020 ◽  
Vol 48 (6) ◽  
pp. E4
Author(s):  
Michael D. Cusimano ◽  
Tony Q. Huang ◽  
Anthony Marchie ◽  
Harley S. Smyth ◽  
Kalman Kovacs
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
General Health ◽  
Emotional Health ◽  
Well Being ◽  
Cushing's Disease ◽  
Sf 36 ◽  
Generic Measures ◽  
Disease Specific

OBJECTIVECushing’s disease (CD) patients experience a range of debilitating symptoms that impair quality of life (QOL) as assessed using generic measures. These generic measures are inadequate to capture the disease-specific burden of illness. The development of the CD-specific QOL-CD measure of QOL using items generated by CD patients and healthcare professionals will provide a holistic assessment of patient outcomes and efficacy of novel therapies.METHODSA total of 96 CD patients participated. A list of 177 items (version 1.0) was generated by treated CD patients (n = 9), caregivers (n = 2), healthcare providers (n = 7), and results of a MEDLINE search. Item reduction was performed through content analysis and dual scaling. Patients’ rating of importance was incorporated to reduce to a final version of 56 items (version 3.0). Evidence for test-retest reliability was sought through administering the QOL-CD 1 week apart and Cronbach’s α of each subscale. Construct validity was assessed through extreme group analysis and comparison with the normal Canadian population. Concurrent validity was sought through comparison with the SF-36, Functional Assessment of Cancer Therapy–Brain (FACT-Br), and Karnofsky Performance Status (KPS). Perioperative testing was conducted on CD patients (n = 25) against nonfunctioning pituitary adenoma controls (n = 25) through pre- and postoperative testing.RESULTSA total of 96 CD patients (86 females and 10 males; mean age 45.23 ± 14.16 years) participated. The QOL-CD was feasible (mean completion time 15 minutes, with 70% believing accurate capture of QOL), reliable (CD 1 week apart: r = 0.86; control 1 week apart: r = 0.83; Cronbach’s α: general health = 0.73, emotional health = 0.85, physical health = 0.78, mental status = 0.82, social well-being = 0.63, medical treatment = 0.54), and valid (extreme group testing p < 0.001; SF-36 and QOL-CD general health: r = 0.56, social well-being: r = 0.21, emotional health: r = 0.61, total score: r = 0.58; FACT-Br and QOL-CD physical health: r = 0.47, social well-being: r = 0.21, emotional health: r = 0.34, total score: r = 0.68; KPS and QOL-CD general health: r = 0.32, total score: r = 0.14). Perioperative testing of CD patients (n = 25) demonstrated improvement in all subscales postoperatively, with a significant difference in emotional health (p < 0.001) and physical health (p < 0.001).CONCLUSIONSThe QOL-CD questionnaire has been developed for patients with CD and has demonstrated evidence for validity and reliability.

Patient characteristics influencing quality of life in gynecologic cancer

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6132-6132
Author(s):  
K. Gil ◽  
H. Frasure ◽  
E. Jenison ◽  
M. Hopkins ◽  
V. Von Gruenigen
Keyword(s):  
Quality Of Life ◽  
Endometrial Cancer ◽  
Educational Level ◽  
Emotional Health ◽  
Gynecologic Oncology ◽  
Gynecologic Cancer ◽  
Patient Characteristics ◽  
Well Being ◽  
Sf 36

6132 Background: The Functional Assessment of Cancer Therapy general (FACT) questionnaire was developed to assess disease and treatment specific issues affecting patients’ quality of life (QoL). Factors other than cancer and its treatment, such as age, general physical and emotional health, and socio-economic status, may have significant effects on QoL and patients’ response to treatments. This study examined the effect of these variables on the domains of the FACT in gynecologic oncology patients undergoing surgery for pelvic mass suspected to be malignant or endometrial cancer. Methods: Demographic information and patient characteristics were obtained pre-operatively. Patients also completed the FACT and the SF-36, a general health questionnaire that measures physical and mental well-being but is not designed to be sensitive to the detection of small treatment effects. Correlation and multiple regression analysis were used to assess the effect of diagnosis, age, body mass index (BMI), educational level, marital status, smoking status, physical (PCS) and mental (MCS) summary scores of the SF-36 on FACT domain scores. Results: Data were collected on 157 women at their pre-operative visit (endometrial cancer, n=45; benign masses, n=79; ovarian cancer, n=33). PCS, MCS and age were positively correlated with scores on the FACT, while BMI and smoking were negatively correlated ( Table ). Educational level was negatively correlated with scores on the social domain but positively correlated with physical scores on the FACT. PCS and MCS accounted for a significant amount of the variance (R2) in regression models for each of the FACT domains ( Table ). Conclusion: Patients’ QoL, as measured by a questionnaire that is sensitive to their disease and treatment, is affected by their baseline characteristics. As treatment options become more complex, these variables are likely to be of increasing importance in evaluating QoL. [Table: see text] No significant financial relationships to disclose.

scholarly journals Quality of Life in Patients with Vestibular Schwannomas Following Gross Total or Less than Gross Total Microsurgical Resection: Should We be Taking the Entire Tumor Out?

Neurosurgery ◽  
2017 ◽  
Vol 82 (4) ◽  
pp. 541-547 ◽  
Author(s):  
Michael J Link ◽  
Morten Lund-Johansen ◽  
Christine M Lohse ◽  
Colin L W Driscoll ◽  
Ehrling Myrseth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Facial Nerve ◽  
Vestibular Schwannoma ◽  
Well Being ◽  
Sf 36 ◽  
Patient Reported ◽  
Microsurgical Resection ◽  
Disease Specific

Abstract BACKGROUND The goal of microsurgical removal of a vestibular schwannoma is to completely remove the tumor, to provide long-term durable cure. In many cases, less than gross total resection (GTR) is performed to preserve neurological, and especially facial nerve function. OBJECTIVE To analyze long-term quality of life (QoL) in a cohort of patients who received either GTR or less than GTR. METHODS Patients operated for vestibular schwannoma less than 3.0 cm in posterior fossa diameter at 1 of 2 international tertiary care centers were surveyed using generic and disease-specific QoL instruments. RESULTS A total of 143 patients were analyzed. GTR was performed in 122, and 21 underwent less than GTR. QoL was assessed at a mean of 7.7 yr after surgery (interquartile range: 5.7-9.6). Patients who underwent GTR had smaller tumors; otherwise, there were no baseline differences between groups. Patients who underwent GTR, after multivariable adjustment for baseline features and facial nerve and hearing outcomes, reported statistically significantly better Short Form Health Survey-36 (SF-36) physical and mental scores, Patient-Reported Outcomes Measurement Information System (PROMIS-10) physical and mental scores, and Penn Acoustic Neuroma Quality of Life (PANQOL) facial, energy, general health, and total scores compared to patients receiving less than GTR. CONCLUSION GTR is associated with better QoL using the general QoL measures SF-36 and PROMIS-10 and the disease-specific PANQOL, even after controlling for baseline and outcome differences. This is especially significant in the assessment of mental health, indicating there may indeed be a psychological advantage to the patient that translates to overall well-being to have the entire tumor removed if microsurgical resection is undertaken.

scholarly journals Quality of Life After Thyroidectomy for Hashimoto Disease in Patients With Persistent Symptoms

2020 ◽  
pp. 014556132096733
Author(s):  
Priyanka Thatipamala ◽  
Julia E. Noel ◽  
Lisa Orloff
Keyword(s):  
Quality Of Life ◽  
Antibody Titer ◽  
General Health ◽  
Short Form ◽  
Well Being ◽  
Hashimoto Thyroiditis ◽  
Thyroid Peroxidase ◽  
Persistent Symptoms ◽  
Sf 36

Objectives: To determine whether thyroidectomy improves quality of life in patients with Hashimoto thyroiditis with persistent symptoms despite biochemical euthyroidism. Methods: A retrospective cohort study was conducted of patients undergoing thyroidectomy for Hashimoto thyroiditis at our institution between 2014 and 2018. The following variables were collected: age, race, body mass index, preoperative symptoms, preoperative thyroid peroxidase antibody titer, thyroglobulin antibody titer, thyroid-stimulating hormone, free thyroxine, specimen weight, and histologic presence of thyroiditis. Outcomes included general health score on the Short Form 36 (SF-36) Health and responses to a questionnaire addressing postoperative disease management. Results: A total of 19 patients were included in the study, 18 of whom were female with a mean age of 48 years. The majority of patients were Caucasian. There were no significant differences between the postoperative general health scores of the patients with Hashimoto thyroiditis and scores from a healthy control population (66.9 vs 74.1; 95% CI: −16.9 to +2.5, P = .16). There were also no differences between groups within the 7 SF-36 subscores. Elevation in preoperative thyroperoxidase antibody correlated with lower reported postoperative energy levels ( r = −0.63, P = .016) and emotional well-being ( r = −.55, P = .041); 87.5% of respondents reported being moderately or extremely happy with their decision to proceed with surgery. Conclusions: Quality of life in patients with Hashimoto thyroiditis who undergo thyroidectomy is equivalent to the general population, and the majority are satisfied with surgery. Thyroidectomy is a consideration for patients with persistent symptoms despite optimization on medical therapy.

scholarly journals Quality of Life in Systemic Lupus Erythematosus

2006 ◽  
Vol 13 (2-4) ◽  
pp. 321-324 ◽  
Author(s):  
Pantelis Panopalis ◽  
Ann E. Clarke
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Improve Patient Care ◽  
Well Being ◽  
Systemic Lupus ◽  
Generic Measures ◽  
Disease Specific

Systemic lupus erythematosus (SLE) is a pervasive disease with wide-ranging effects on physical, psychological and social well-being. As such, a comprehensive assessment of SLE should include several different outcomes, such as quality of life (QoL) and economic costs, in addition to measures of disease activity and damage. In fact, disease effects on QoL are often considered of greater overall importance to patients. Two approaches have been used in the measurement of QoL: generic questionnaires and disease-specific questionnaires. Generic questionnaires are designed to be used across various conditions and populations, whereas disease-specific questionnaires are designed to measure outcomes in one specific disease or condition. The most commonly used measure of QoL is the Medical Outcomes Study Short Form 36 (SF-36), which is a generic measure that is applicable in a variety of conditions, including SLE. Recently, SLE-specific measures have been developed that may prove to be more responsive than generic measures. The hope is that improved outcome measures will allow for better assessment of SLE and eventually facilitate drug development and improve patient care.

scholarly journals The Five-Year Prospective Study of Quality of Life in Hemifacial Spasm Treated with Abo-Botulinum Toxin A

Toxins ◽  
2021 ◽  
Vol 13 (3) ◽  
pp. 215
Author(s):  
Subsai Kongsaengdao ◽  
Narong Maneeton ◽  
Benchalak Maneeton
Keyword(s):  
Quality Of Life ◽  
Botulinum Toxin ◽  
Hemifacial Spasm ◽  
General Health ◽  
Botulinum Toxin A ◽  
Health Domain ◽  
Sf 36 ◽  
Clinical Resistance ◽  
Disease Specific

This study aimed to determine the long-term quality of life (QoL) in hemifacial spasm (HFS) patients after treating with Abo-botulinum toxin A (Abo-BTX). The study assessed the disease-specific QoL (hemifacial spasm questionnaire 30 items; HFS 30), the involuntary movements (abnormal involuntary movement scale; AIMS), general health QoL (Medical Outcomes 36-Item Short Form Health Survey; SF-36), and Depression (the Center of Epidemiologic Studies-Depression questionnaire; CES-D). A total of 74 HFS patients were enrolled from 2012 to 2017. The disease-specific QoL; involuntary movements; and the general health domain of SF 36 were significantly improved after injections of Abo-BTX A in the first few years (p < 0.04), but significantly decreased at the fifth year of treatment without significant clinical resistance observed (p < 0.001). Only the general health domain of SF 36 showed persistent improvement over five years (p = 0.02). In summary, Abo-BTX A can improved quality of life in the first few years; however only the general health domain of SF-36 showed significant improvement over five years (p = 0.02). No clinical resistance was observed.

scholarly journals The Effect of Hallux Valgus Surgery on Quality of Life

2020 ◽  
Vol 110 (5) ◽  
Author(s):  
Murat Koken ◽  
Berk Guclu
Keyword(s):  
Quality Of Life ◽  
Hallux Valgus ◽  
Physical Functioning ◽  
General Health ◽  
Bodily Pain ◽  
Well Being ◽  
Duration Of Symptoms ◽  
Sf 36 ◽  
The Mean

Background Health-related quality of life (QOL) is defined as a patient's subjective perception of his or her own health. Insufficient data exist on QOL of patients who undergo a hallux valgus (HV) operation. We used a 36-item short form survey (SF-36) to measure QOL of such patients. Our aim was to evaluate the effect of HV on QOL and to identify QOL determinants. Methods Fifty patients who underwent surgery for HV between 2015 and 2017 were included in the study. The SF-36 questionnaire was applied to the patients before and after surgery. Patients' medical records were examined to identify possible factors affecting QOL such as age, gender, body mass index, duration of symptoms, or smoking. Results The mean age of the patients was 55.6 ± 3.8 years, and 42 of the 50 patients were women. The mean duration of disease was 12 ± 3.7 years. The surgery improved QOL scores for general health, emotional well-being, role limitations due to personal or emotional problems, physical functioning and bodily pain. However, the changes in scores for vitality and social functioning were not statistically significant. Lower postoperative QOL scores for emotional well-being and bodily pain were significantly associated with age and duration of the symptoms. Compared to the mean QOL of healthy adult Turkish population, all scores in subdimensions were lower. Conclusions This study shows that HV in adults has a negative impact on general health, bodily pain, physical functioning, physical and emotional well-being rather than social well-being and vitality.

QUALITY OF LIFE IN END-STAGE RENAL DISEASE PATIENTS

2012 ◽  
pp. 22-30
Author(s):  
Bui Bao Hoang ◽  
Huu Loi Le
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Physical Health ◽  
Negative Correlation ◽  
General Health ◽  
Study Quality ◽  
Positive Correlation ◽  
Sf 36 ◽  
Esrd Patients

Background: ESRD is severe result from chronic renal diseases. Treatment of ESRDs is still difficult and expensive. Quality of life of these patients is low. Aims: 1. Study quality of life in patients with ESRD by SF-36 questionaire. 2. Estimate the relationship between SF-36 score and clinical, paraclinical features, Kt/V in the patients with ESRD. Patients-Method: cross-sectional study design. 157 ESRD patients in Department of Nephrology and Rheumatology and Department of Hemodialysis – Hue Central Hospital devided into three groups: conservative treatment (CT), hemodialysis (HD) and CAPD. Study quality of life by using SF-36 questionnaire, version 2.0, Vietnamese. Results: 1. Patients with ESRD have average SF-36 score (physical health: 46.75 ± 15.34; mental health: 47.5 ± 14.66; general health: 49.06 ± 14.61). Conservative group has low SF-36 score (physical health: 32.5 ± 15.9; mental health: 29.67 ± 15.29; general health: 32.35 ± 15.52); CAPD group has average SF-36 score (physical health: 59.75 ± 10.91; mental health: 54.43 ± 7.97; general health: 59.21 ± 8.82); HD group has average SF-36 score (physical health: 51.62 ± 11.94; mental health: 54.9 ± 10.31; general health: 55.2 ± 10.49). 2. In conservative health: SF-36 score has negative correlation with serum BUN, creatininemia, dose of erythropoietin, has positive correlation with Hb, HCO3-. In HD group, there are negative correlations between SF-36 score and blood pressure, BUN, creatininemia, positive correlation with Hb, Albuminemia and Kt/V. In CAPD group, negative correlation between SF-36 score and BUN, creatininemia, positive correlation with Hb. Conclusion: Quality of life by SF-36 score in patients with ESRD is at average level and there is negative correlation between SF-36 score and BUN, creatininemia.

Generic versus Disease-specific Instruments in Quality-of-life Assessment of Chronic Obstructive Pulmonary Disease

2006 ◽  
Vol 45 (02) ◽  
pp. 211-215 ◽  
Author(s):  
V. Vondra ◽  
M. Malý
Keyword(s):  
Quality Of Life ◽  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Well Being ◽  
Life Assessment ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Sf 36 ◽  
Disease Specific

Summary Objectives: Chronic respiratory diseases may alter a patient’s social life and well-being. Measures of health-related quality of life have been proven to bring complementary information to functional assessments. The aim of the study was to describe the questionnaires that are most frequently used to measure this subjective construct in patients with chronic obstructive pulmonary disease (COPD) and to compare the responses obtained via administering one generic (SF-36) and one disease-specific questionnaire (St. George’s Respiratory Questionnaire; SGRQ) to patients with COPD. Methods: One group of patients (46 individuals) was used to evaluate the questionnaire’s performance in repeated administrations under unchanged conditions (reproducibility) and to study the correlations of corresponding domains of respective questionnaires. Responsiveness of both questionnaires was tested on another group of 129 patients measured before and after the therapeutic stay at the spa. Methods of cor-relational analysis (Spearman, intraclass, and canonical correlation coefficients) as well as the Wilcoxon rank test were used for statistical analysis. Results: Both questionnaires seem to be comprehensive outcome measures for patients with COPD, but some particular areas may not be covered with the same intensity (e.g. emotional problems). Reproducibility of both questionnaires was good and only small non-significant shifts were seen, particularly in physical and social functioning domains. In repeated measurement, the SGRQ seemed to be slightly more responsive to change than the SF-36. Conclusions: The idea of using generic and disease-specific questionnaires together probably represents the best approach to this topic. It may improve our knowledge and explain better the relationship between disease-specific changes in patient status and both disease-specific treatment and general functional status.

Quality of life of patients with Sjogren’s disease with ongoing therapy with diseasemodifying antirheumatic drugs

2020 ◽  
pp. 33-38
Author(s):  
E. Yu. Gan ◽  
L. P. Evstigneeva
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Life Quality ◽  
Well Being ◽  
Disease Modifying Antirheumatic Drugs ◽  
Antirheumatic Drugs ◽  
Sf 36 ◽  
Disease Modifying ◽  
Sjögren’S Disease

Purpose of the study. Assessing the association between the life quality of patients with Sjogren’s Disease and ongoing therapy with various disease-modifying antirheumatic drugs.Material and methods. The study was conducted on the basis of the regional rheumatology center of the consultative diagnostic clinic of the Sverdlovsk Regional Clinical Hospital No. 1. This work is based on the results of a simultaneous study of 74 patients with primary Sjogren’s Disease (SD), distributed in three comparison groups receiving various disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine. The diagnosis of SD was carried out according to European-American criteria AECGC (2002) [18]. In order to analyze the quality of life of patients with SD, the 36-Item Short Form Health Survey (SF‑36) was used. Statistical data processing was carried out using Statistica 7.0 program.Results. Assessment of the quality of life of patients with SD, which is an integrative criterion of human health and well-being, revealed the absence of statistically significant differences (p > 0.05) on eight scales and two health components of the SF‑36 questionnaire in the analyzed groups that differ in the treatment of disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine.Conclusions. The obtained data indicate an equivalent quality of life in SD patients treated with different disease-modifying antirheumatic drugs methotrexate, chlorambucil and hydroxychloroquine, and therefore hydroxychloroquine can be considered as an alternative basic therapy in patients with SD with certain limitations and contraindications methotrexate and chlorambucil.

Health-Related Quality of Life in Patients with Ankylosing Spondylitis: Relationship with Disease-Related Variables

2020 ◽  
Vol 16 (4) ◽  
pp. 311-318 ◽  
Author(s):  
Gehan Elolemy ◽  
Ahmed Aboughanima ◽  
Sahar Ganeb ◽  
Haytham Elziat
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Physical Health ◽  
Disease Activity ◽  
Functional Status ◽  
Spinal Mobility ◽  
Peripheral Arthritis ◽  
Radiographic Severity ◽  
Sf 36

Background: Ankylosing spondylitis (AS) is a chronic progressive inflammatory disease leading to functional limitations and subsequently impaired quality of life (QoL). Despite the fact that QoL was recognized as a significant perception, it was excluded from the core domains (defined by the Assessment of Spondyloarthritis International Society), because of ambiguity of measurement choice. Aim: To assess QoL in patients with AS using a generic; Short Form-36 (SF-36) and a diseasespecific; Ankylosing Spondylitis quality of life (ASQoL) instruments and to explore its relationship to the clinical characteristics, disease activity, functional status, and radiographic severity. Methods: A total of 47 AS patients who fulfilled modified New York criteria were included. Disease activity, functional status, spinal mobility, and radiographic severity were assessed by Bath AS Disease Activity Index (BASDAI), Bath AS Functional Index (BASFI), Bath AS Metrology Index (BASMI) and Bath AS Radiology Index (BASRI) respectively. SF-36 and ASQoL instruments evaluated Qol. Results: Physical health was more affected especially in patients with peripheral arthritis by SF-36 (p=0.008) and ASQoL (p=0.022) scores. Both SF-36 total and ASQoL scores correlated significantly with BASDAI (r = -0.329, p = 0.024 and r = 0.420, p = 0.003), BASFI (r = -0.399, p = 0.005 and r = 0.513, p=0.001) and BASMI (r = -0.382, p = 0.008 and r = 0.482, p= 0.001) respectively. Conclusion: QoL was impaired in AS patients with highest impact on physical health especially in association with peripheral arthritis. SF-36 and ASQol have a comparable achievement in the evaluation of QoL in AS patients and both physical function and spinal mobility were identified as predictors of poor QoL.

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