scholarly journals Quality of Life and Burden of Disease in Italian Patients with Transfusion-Dependent Beta-Thalassemia

2021 ◽  
Vol 11 (1) ◽  
pp. 15
Author(s):  
Fabio Tedone ◽  
Piero Lamendola ◽  
Stefania Lopatriello ◽  
Davide Cafiero ◽  
Daniele Piovani ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Burden Of Disease ◽  
Short Form ◽  
Well Being ◽  
Beta Thalassemia ◽  
Family Management ◽  
Sf 36 ◽  
Lower Hrqol

Lifespan treatment in transfusion-dependent β-thalassemia (TDT) is expected to impact quality of life. This study aimed at evaluating health-related quality of life (HRQoL), well-being, and the burden of TDT on Italian patients. Patients (≥14 years) were invited to complete a cross-sectional, online volunteer survey. HRQoL was measured by the 36-item short-form health survey (SF-36) and wellbeing was measured by the Italian version of the Psychological General-Well-Being-Index (PGWBI). A total of 105/167 completed questionnaires were analyzed (46% males; median age 44, (IQR = 11)). Patients reported lower HRQoL compared with the general population in all SF-36 domains (except for emotional well-being (p = 0.7024) and role limitations due to emotional problems (p = 0.1389)). PGWBI domains general health and vitality and the total PGWBI score were all significantly lower (p = 0.0001) compared with the general population. On average, patients spent 16.62 h/month engaged in care activities that were additional to the time required for completing transfusions. Of the 16.62 h/month, 11.7 h/month were required for therapy management and 4.92 h/month for family management. This study found lower HRQoL and well-being in physical and psychological domains compared with the general population. Further, patients were found to have a high perceived burden of disease.

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.

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.

scholarly journals Psychosocial factors, disability and quality of life in chronic shoulder pain patients with central sensitization

2020 ◽  
Vol 8 (2) ◽  
Author(s):  
Prachita P. Walankar ◽  
Vrushali P. Panhale ◽  
Manali M. Patil
Keyword(s):  
Quality Of Life ◽  
Shoulder Pain ◽  
Central Sensitization ◽  
Pain Catastrophizing ◽  
Short Form ◽  
Well Being ◽  
Sf 36 ◽  
Pain Patients ◽  
Chronic Shoulder Pain

Chronic shoulder pain is a complex and multidimensional phenomenon with multiple causative factors involved in its perpetuation. Alteration of central nervous system processing along with the central sensitization is a predominant feature in chronic pain. Reduction in physical function has an impact on the psychological well-being of an individual. The aim of the study was to compare pain, kinesiophobia, catastrophizing, disability and quality of life in chronic shoulder pain patients with and without central sensitization. Eighty chronic unilateral shoulder pain patients in the age group of 40 to 60 years were recruited. Of them, 38 were chronic shoulder pain with central sensitization and 42 without central sensitization, classified on the basis of central sensitization inventory. Pain catastrophizing was measured using the pain catastrophizing scale, kinesiophobia using Tampa scale of kinesiophobia, disability using Shoulder pain and disability index and quality of life using 36-Item Short Form Health Survey questionnaire was evaluated in both the groups. Increased pain catastrophizing (p=0.000), kinesiophobia (p=0.000) and disability (p=0.000) was observed in centrally sensitized chronic shoulder pain patients. Also, physical component summary (p=0.000) and mental component summary (p=0.000) of SF-36 quality of life were reduced in chronic shoulder pain with central sensitization as compared to without central sensitization. Hence, these components should be included during assessment which will provide a holistic and multimodal approach towards the understanding, planning and management of chronic shoulder pain patients.

scholarly journals Quality of Life After Pulmonary Rehabilitation: Assessing Change Using Quantitative and Qualitative Methods

2000 ◽  
Vol 80 (10) ◽  
pp. 986-995 ◽  
Author(s):  
Pat G Camp ◽  
Jessica Appleton ◽  
W Darlene Reid
Keyword(s):  
Quality Of Life ◽  
Qualitative Research ◽  
Qualitative Methods ◽  
Physical Function ◽  
Pulmonary Rehabilitation ◽  
Short Form ◽  
Well Being ◽  
Sf 36 ◽  
Quantitative And Qualitative Methods

Abstract Background and Purpose. The purpose of this study was to use quantitative and qualitative research methods to evaluate quality-of-life (QOL) changes in patients with chronic obstructive pulmonary disease (COPD) after pulmonary rehabilitation. Subjects. Twenty-nine individuals with COPD (18 women and 11 men), with a mean age of 69 years (SD=8.6, range=53–92), participated. Methods. Subjects were assessed before and after a 5-week control phase and after a 5-week rehabilitation phase using the Chronic Respiratory Questionnaire (CRQ), the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), and spirometry. Our qualitative research was based on a subsample of 7 subjects who were interviewed after pulmonary rehabilitation. Results. Pulmonary rehabilitation improved QOL, as demonstrated by increases of 22% and 14% in the physical function categories of the CRQ and the SF-36, respectively, and by an increase of 10% in the CRQ's emotional function category. The qualitative data indicated how pulmonary rehabilitation influenced QOL. Conclusion and Discussion. The use of both quantitative and qualitative methods illustrated the nature of improvement in QOL after pulmonary rehabilitation. Improved physical function, less dyspnea, and a heightened sense of control over the subjects' COPD resulted in increased confidence and improved emotional well-being.

Factors influencing depression endpoints research (FINDER): Study design and population characteristics

2008 ◽  
Vol 23 (1) ◽  
pp. 57-65 ◽  
Author(s):  
Ana Garcia-Cebrian ◽  
Michael Bauer ◽  
Angel L. Montejo ◽  
Nicolas Dantchev ◽  
Koen Demyttenaere ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Study Design ◽  
Short Form ◽  
Clinical Depression ◽  
Population Characteristics ◽  
Population Norms ◽  
Factors Influencing ◽  
Sf 36

AbstractFactors influencing outcomes of depression in clinical practice, especially health-related quality of life (HRQoL), are poorly understood. The Factors Influencing Depression Endpoints Research (FINDER) study is a European prospective, observational study designed to estimate the HRQoL of adults with a clinically diagnosed depressive episode at baseline, and 3 and 6 months after commencing antidepressant medication. We report here the study design and baseline patient characteristics.HRQoL was assessed by the 36-item Short-Form Health Survey (SF-36) and European Quality of Life-5 Dimensions (EQ-5D). Patient ratings on Hospital Anxiety and Depression Scale (HADS) and pain Visual Analogue Scale (VAS) were also obtained. Results (n = 3468) showed that SF-36 mental component summary (mean 22.2) was more than two SDs below general population norms (mean 50.0) and one SD below clinical depression norms (mean 34.8); the physical component summary (mean 46.1) was similar to general population (mean 50.0) and clinical depression norms (mean 45.0). Mean EQ-5D scores were also lower than general population norms. Mean HADS-Depression and -Anxiety subscores were 12.3 and 13.0, respectively. Fifty-six percent of patients reported an overall pain VAS score of at least 30 mm and 70% of these patients had no physical explanation for their pain.Further investigation into factors associated with HRQoL in depression after treatment initiation is warranted.

Health-related quality of life of unrelated bone marrow donors in Japan

Blood ◽  
2002 ◽  
Vol 99 (6) ◽  
pp. 1995-2001 ◽  
Author(s):  
Mina Nishimori ◽  
Yoshitsugu Yamada ◽  
Keiko Hoshi ◽  
Yuichi Akiyama ◽  
Yasutaka Hoshi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bone Marrow ◽  
Short Form ◽  
Well Being ◽  
Health Related Quality ◽  
National Norm ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related

Abstract To promote bone marrow donation, both the safety and well-being of healthy unrelated volunteer donors must be protected. This prospective cohort study evaluated donors' health-related quality of life (HRQOL) and identified factors associated with it. Using the Medical Outcomes Study Short Form 36 Health Survey (SF-36) before bone marrow harvesting (BMH), and again 1 week and 3 months after the donors' discharge, we evaluated HRQOL of 565 donors (329 men, 236 women) registered with the Japan Marrow Donor Program (JMDP). We also examined the data routinely collected by the JMDP, such as BMH-related problems and other demographic and medical variables, to determine whether such data could be used to predict donors' HRQOL after discharge. Mean scores of all pre-BMH SF-36 subscales showed better functioning than the national norm. One week after discharge, mean scores on physical functioning (PF) and role-physical (RP) subscales, indicative of physical states, and bodily pain (BP) were approximately 1 SD lower than the national norm; however, mental health (MH) and general health perception (GH) remained above normal; the most frequent BMH-related problems were pain at the donation site and lower back pain, which were associated with lower PF, RP, and BP scores. Female gender and duration of procedure predicted lower PF, RP, and BP. Three months after discharge, mean scores of all SF-36 subscales had returned to baseline levels. These data show that the adverse effects of BMH on donors' HRQOL are transient and can be minimized by better management of pain.

Factors affecting quality of life in lower limb amputees

2011 ◽  
Vol 35 (1) ◽  
pp. 90-96 ◽  
Author(s):  
Richa Sinha ◽  
Wim JA van den Heuvel ◽  
Perianayagam Arokiasamy
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Lower Limb ◽  
Short Form ◽  
Treatment Protocol ◽  
Phantom Limb ◽  
Sf 36 ◽  
Prospective Longitudinal ◽  
Lower Limb Amputees

Background: Quality of life (QoL) is increasingly being recognized as an important outcome for rehabilitation programs, and has mainly been used to compare the efficacy of interventions or to compare amputees with other diseased populations. There is relatively a limited number of studies primarily focusing on analyzing the multitude of factors influencing QoL in amputees.Objectives: To identify important background and amputation related factors which affect quality of life (QoL) in lower limb amputees, and to compare QoL profile of amputees’ to that of general population.Study design: Cross-sectional.Methods: Lower limb amputees 18 years and above from a rehabilitation centre, a limb-fitting centre and four limb-fitting camps were interviewed ( n = 605). Structured questionnaires included patient background and amputation characteristics, and the MOS short-form health survey (SF-36) for assessing QoL. The SF-36 was administered to a general adult population using purposive sampling ( n = 184).Results: SF-36 PCS and MCS scores were found to be significantly lower for amputees when compared to those for the general population. In this study, employment status, use of an assistive device, use of a prosthesis, comorbidities, phantom-limb pain and residual stump pain were found to predict both PCS and MCS scores significantly, and explained 47.8% and 29.7% of variance respectively. Age and time since amputation accounted for an additional 3% of variance in PCS scores.Conclusions: The abovementioned factors should be addressed in order to ensure holistic reintegration and participation, and to enable the amputees to regain or maintain QoL. Prospective longitudinal studies are recommended to systematically study the change in QoL over time and to assess its determinants.Clinical relevanceProper appraisal of abovementioned factors in the rehabilitation programme would assist in establishing a treatment protocol, which would adequately address QoL in amputees.

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.

SF-36 quality of life questionaire evaluation in a large cohort of women with breast cancer treated with hormonotherapy

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 19657-19657
Author(s):  
E. L. Morgenfeld ◽  
B. Rolnik ◽  
L. Cassab ◽  
D. Gercovich ◽  
F. Negro ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Body Weight ◽  
Body Weight Gain ◽  
Short Form ◽  
Well Being ◽  
Menopausal Symptoms ◽  
Functional Health ◽  
Sf 36

19657 Background: Hormonotherapy (H) is the most widely used treatment against breast cancer (BC). The aim of this study is a prospective evaluation with an enriched the SF-36 questionnaire, of the QOL of BC patients (pt) treated with H at the IOHM. Specific questions regarding menopausal symptoms and body weight were added. Methods: Between Aug 2005 and Nov 2006, all pt that were undergoing H, were requested to fill out a SF-36 self-evaluation form. The SF-36 is a multi-purpose, short-form health survey, with 36 questions about functional health and well-being. The answers were tabulated. The pre-treatment and post-treatment body weight of each pt was registered. Results: Three Hundred and Twenty-six pt were invited to participate, and all of them accepted, and signed a consent form. Characteristics of the population: Diagnosis: DCIS: 36 pt; LCIS: 5 pt; IDC 250 pt; ILC: 35 pt. All cases expressed hormonal receptors. The H was adjuvant in 254 pt (78%) mostly treated with T and palliative in 72 pt (22%) mostly treated with AI. Median age was 62 years, however 63 pt (19%) were pre-menopausal. The median time under treatment was 33 months (range 1–71 m). The pt reported: General evaluation of Quality of life: Very good or excellent: 154 pt (47%) , Good: 134 pt (41%), Poor: 34 pt (11%). Severe limitations for demanding physical activities: 43 pt (13 %). A reduction of time spent on the job: 66 pt (22%). Severe pain during the last four weeks prior to answering the questionnaire: 24 pt (8 %). Weight increase perception: 153 pt (47%). Actual increase of weight: 192 pt (60%) (Median: 4 kg). Menopausal symptoms: Daily Hot Flushes: 132 pt (40%). Vaginal discharge 110 pt (33%) Decrease of libido: 98 pt (30%), Vaginal dryness 76 pt (23%), Nightly sweats: 40 pt (12%). Sixty pt (18%) suffered from and received treatment for menopausal symptoms. Conclusions: 1) The SF-36 is a useful tool to measure the BC patients’ quality of life 2) Although in our cohort most of the patients (88,3%) rated their general QOL as “good to very good”, a third of the pt presented severe menopausal symptoms, and 18% received non hormonal medication for symptoms relief 3) Sixty percent of the pt had a median body weight gain of 4 Kg. No significant financial relationships to disclose.

Stress factors and quality of life in adult hemodialysis patients

2017 ◽  
Vol 6 (4) ◽  
Author(s):  
Camelia SOPONARU ◽  
Ancuta BOJIAN ◽  
Magdalena IORGA
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Well Being ◽  
Physical Symptoms ◽  
Stress Factors ◽  
Related Factors ◽  
Sf 36 ◽  
Access Problems ◽  
Food And Water Intake

The aim of the study is to investigate the influence of physiological and psychosocial stress on the quality of life (QoL) in a group of hemodialysis (HD) patients from our center. Materials and methods: A number of 70 patients were included in the study. We used the Hemodialysis Stressors Scale, in order to estimate the stress level, and the Short Form-36 (SF-36) Health Survey Questionnaire, to evaluate the QoL. Results: The M for age = 54.5 ± 11.7 years and 38.6% were men. Patients with a low level of stress had significantly higher physical health (M = 53,52; p = 0.04) and mental health (M = 51,61; p <0.01) scores. The disease-related factors that induced the highest level of stress were the physical symptoms (1.67 ± 0.68), the food and water intake restrictions (1.64 ± 0.76), the vascular access problems (1.44 ± 0.83), the daily activity limitations (1.22 ± 0.72), the dependence on the medical staff (1.14 ± 0.74). Socio-economical and demographical factors had no effect on stress and QoL. Conclusions:  The study prove the importance of stress for the QoL in HD patients. Efforts should be undertaken to minimize stress factors. Keywords: Dialysis; stress; physical well-being; psychological well-being; quality of life;

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