scholarly journals Health-related quality of Life Instrument in Neuromuscular Disorders

2021 ◽  
Vol 39 (2 Suppl) ◽  
pp. 93-109
Author(s):  
Ohyun Kwon
Keyword(s):  
Quality Of Life ◽  
Functional Status ◽  
Neuromuscular Disorders ◽  
Well Being ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Medicine places its ultimate purpose at prolonging people’s healthy lives. Health-related quality of life (HRQoL) has emerged as one of the key measures of medical practice. HRQoL, the most important patient-reported outcome, should include not only functional status and disability as result of a disease but also patient’s handicaps and restriction of social participation as result of the disease. Neuromuscular disorders as a whole comprise of wide constellation of various symptoms and signs, which in turn, affect negative influence on patients’ functional status, psychological well-being, and tend to restrict patients’ financial and social achievement. The most influential HRQoL measures, either generic or neuromuscular disease-specific, will be presented and discussed. Medical Outcomes Study Short Form 36-Item, EuroQoL-5 Dimensions, Individualized Neuromuscular QoL Questionnaire, Norfolk Quality of Life Questionnaire-Diabetic Neuropathyare among the lists.

Health-Related Quality of Life Measurement in Public Health

2021 ◽  
Vol 43 (1) ◽  
Author(s):  
Robert M. Kaplan ◽  
Ron D. Hays
Keyword(s):  
Public Health ◽  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Publication Date ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Patient-reported outcomes are recognized as essential for the evaluation of medical and public health interventions. Over the last 50 years, health-related quality of life (HRQoL) research has grown exponentially from 0 to more than 17,000 papers published annually. We provide an overview of generic HRQoL measures used widely in epidemiological studies, health services research, population studies, and randomized clinical trials [e.g., Medical Outcomes Study SF-36 and the Patient-Reported Outcomes Measurement Information System (PROMIS®)-29]. In addition, we review methods used for economic analysis and calculation of the quality-adjusted life year (QALY). These include the EQ-5D, the Health Utilities Index (HUI), the self-administered Quality of Well-being Scale (QWB-SA), and the Health and Activities Limitation Index (HALex). Furthermore, we consider hybrid measures such as the SF-6D and the PROMIS-Preference (PROPr). The plethora of HRQoL measures has impeded cumulative science because incomparable measures have been used in different studies. Linking among different measures and consensus on standard HRQoL measurement should now be prioritized. In addition, enabling widespread access to common measures is necessary to accelerate future progress. Expected final online publication date for the Annual Review of Public Health, Volume 43 is April 2022. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

scholarly journals Health-Related Quality of Life in Exclusively Breastfed Filipino Mother-Infant Dyads (P11-059-19)

2019 ◽  
Vol 3 (Supplement_1) ◽  
Author(s):  
Elvira Estorninos ◽  
Rachel Lawenko ◽  
Katherine Buluran ◽  
Yipu Chen ◽  
Jowena Lebumfacil ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Gastrointestinal Symptoms ◽  
Well Being ◽  
The Philippines ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Objectives Health-related quality of life (QoL) is an important component of overall wellbeing. The study aimed to describe the parent-perceived infant quality of life of exclusively breastfed infants along with their mother's physical and mental health in a Filipino cohort. Methods Healthy term infants, who were exclusively breastfed since birth and whose mothers had decided to exclusively breastfeed until 6 months (m) of age, were enrolled at 21–26 days of age from a single center in the Philippines. Parents completed the Infant Toddler Quality of Life Questionnaire (ITQoL) and the Short Form Health Survey (SF-36v2) (assessing maternal QoL) at enrollment and when infants were 2.5 m, 4 m, and 6 m of age. Infants’ anthropometrics were measured and parents completed gastrointestinal (GI) diaries and Infant Gastrointestinal Symptoms Questionnaire (IGSQ) throughout the study. Results Among 75 enrolled infants, 70 completed the study at age 6 m. Infant QoL mean scores were high throughout the study (range 0–100 for each concept; Table 1). Nonetheless, noticeable improvements were observed between enrollment and 2.5 m, especially in the infant-focused concept of Temperament and Moods as well as in all three parent-focused concepts (Emotional, Time, and Family Cohesion) which measure impact of child's health on parents. Between 2.5 and 6 m, the scores remained relatively stable. For maternal QoL mean scores (scores standardized to Mean = 50, SD = 10 for each scale; Table 1), noticeable improvements were observed between enrollment and 2.5 m, with Physical Health showing more pronounced improvements. The Role-Emotional scale, which measures role limitations due to emotional problems, showed the lowest scores. From enrollment to age 6 m, mean z-scores for weight-for-age, length-for-age and head circumference-for-age stably tracked WHO Growth Standards. Additionally, infant stool consistency became more formed, and incidences of spitting up/vomiting and flatulence decreased. The overall GI burden also decreased (IGSQ index score: range 13–65; 15.8 ± 3.2 at enrollment and 14.0 ± 1.2 at 6 m). Conclusions In a cohort of exclusively breastfed Filipino mother-infant dyads, parent-perceived infant health-related quality of life was high and comparable to that reported in literature1. Maternal quality of life, particularly their perceived state of emotional well-being, warrants further investigation. Funding Sources Nestec Ltd. Supporting Tables, Images and/or Graphs

Relationship between financial toxicity and health-related quality of life in patients with advanced solid tumors.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 31-31
Author(s):  
Jonas A. De Souza ◽  
Bonnie J. Yap
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Tumor Type ◽  
Financial Toxicity ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Cost

31 Background: Financial toxicity is an important Patient-Reported Outcome (PRO). Its relationship with health-related quality of life (HRQOL) has not been previously described. Therefore, we report the relationship between financial toxicity and health-related quality of life (HRQOL) in patients with advanced cancers. Methods: The global HRQOL was measured by the Functional Assessment of Cancer Therapy-General (FACT-G) and its subscales Physical Well-Being (PWB), Social/Family Well-Being (SWB), Emotional Well-Being (EWB) and Functional Well-Being (FWB). Financial toxicity was assessed by the COST (COmprehensive Score for financial Toxicity), a PRO measure previously developed in 155 patients with advanced cancers. Correlations were calculated using Spearman's correlation. Subject data on tumor type, age, gender, race, income, insurance type and educational level were collected. Results: Fifty patients were assessed. All participants were diagnosed with advanced cancers, were receiving treatment at the time of participation, and had received treatment for at least 3 months. The median COST was 22 (range 0-44), and mean 22.51 (s.d. ±10.80). A negative correlation existed between the COST and HRQOL as measured by the FACT-G (r = -0.47, P <.001), and its subscales: PWB (r=-0.35, p < 0.05), SWB (r=-0.33, p < 0.05), EWB (r=-0.32, p < 0.05) and FWB (r=-0.41, p < 0.01). In this small sample, there were no correlations between the COST and sociodemographic characteristics. Conclusions: Results demonstrate an inverse relationship between patient-reported HRQOL and financial toxicity, suggesting that higher financial toxicity is associated with worse HRQOL. A larger study is in progress to identify cancer patients at higher risk of financial toxicity.

scholarly journals Impact of Short-Stay Urethroplasty on Health-Related Quality of Life and Patient’s Perception of Timing of Discharge

2015 ◽  
Vol 2015 ◽  
pp. 1-5 ◽  
Author(s):  
Henry Okafor ◽  
Dmitriy Nikolavsky
Keyword(s):  
Quality Of Life ◽  
Life Questionnaire ◽  
Short Stay ◽  
Health Related Quality ◽  
Severe Problem ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Patient’S Perception

Objective.To evaluate health-related quality of life in patients after a short-stay or outpatient urethroplasty.Methods.Over a 2-year period a validated health-related quality-of-life questionnaire, EuroQol (EQ-5D), was administered to all patients after urethroplasty. Postoperatively patients were offered to be sent home immediately or to stay overnight. Within 24 hours after discharge they were assessed for mobility, self-care, usual activities, pain or discomfort, and anxiety and depression. An additional question assessing timing of discharge was added to the survey. Clinical and operative characteristics were examined.Results.Forty-eight patients after anterior urethroplasty completed the survey. Mean age and mean stricture length were 51.6 years (21–78) and 60 mm (5–200 mm), respectively. Most etiologies were idiopathic (50%n= 24), trauma (19%,n= 9), and iatrogenic (19%,n= 9). Forty-one patients (85%) stayed overnight, while 7 patients (15%) chose to be discharged the same day. Overall, ninety-six percent were discharged within 23 hours of surgery. In the short-stay and the outpatient cohorts, 90% and 86%, respectively, felt they were discharged on time. No patient reported a severe problem with postoperative pain or mobility.Conclusions.The majority of patients discharged soon after their procedure felt that discharge timing was appropriate and their health-related quality of life was only minimally affected.

scholarly journals Shoulder Pain, Functional Status, and Health-Related Quality of Life after Head and Neck Cancer Surgery

2013 ◽  
Vol 2013 ◽  
pp. 1-10 ◽  
Author(s):  
Hsiao-Lan Wang ◽  
Juanita F. Keck ◽  
Michael T. Weaver ◽  
Alan Mikesky ◽  
Karen Bunnell ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Head And Neck Cancer ◽  
Functional Status ◽  
Shoulder Pain ◽  
Well Being ◽  
Health Related Quality ◽  
Symptom Experience ◽  
Related Quality ◽  
Health Related

Head and neck cancer (HNC) patients experience treatment-related complications that may interfere with health-related quality of life (HRQOL). The purpose of this study was to describe the symptom experience (shoulder pain) and functional status factors that are related to global and domain-specific HRQOL at one month after HNC surgery. In this exploratory study, we examined 29 patients. The outcome variables included global HRQOL as well as physical, functional, emotional, and social well-being. Symptom experience and functional status factors were the independent variables. In the symptom experience variables, shoulder pain distress was negatively associated with physical well-being (R2=0.24). Among the functional status variables, eating impairment was negatively related to global HRQOL (R2=0.18) and physical well-being (R2=0.21). Speaking impairment and impaired body image explained a large amount of the variance in functional well-being (R2=0.45). This study provided initial results regarding symptom experience and functional status factors related to poor HRQOL in the early postoperative period for HNC patients.

scholarly journals Longitudinal prospective evaluation of oral health-related quality of life in young patients undergoing fixed orthodontic appliance treatment as part of a randomised trial

2020 ◽  
Author(s):  
Mustafa Elhussein ◽  
Philip Benson
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Orthodontic Treatment ◽  
Well Being ◽  
Health Related Quality ◽  
Patient Reported ◽  
Before And After ◽  
Related Quality ◽  
Health Related

Abstract Background The objectives of this study were to investigate relationships between change in the aesthetic appearance before and after orthodontic treatment and patient-reported change in oral health-related quality of life (OHRQoL), and to assess the responsiveness of two OHRQoL measures to any changes from orthodontic treatment. Methods Two hundred and ten participants in a multicentre (two teaching hospitals and four specialist orthodontic practices), single blinded, randomised clinical trial with 2 parallel groups, were administered one of two age-specific questionnaires, either the Child Perceptions Questionnaire (CPQ11-14-ISF-16) or the Psychosocial Impact of Dental Aesthetics Questionnaire (PIDAQ), before and after orthodontic treatment. Clinical photographs were assessed by two groups of laypeople and orthodontists using the Index of Orthodontic Treatment Need Aesthetic Component (IOTN-AC). Results Two hundred and ten participants were randomised, and 197 completed the trial. Before and after OHRQoL data were successfully obtained from 110 participants. There was a mean reduction in the total CPQ11-14-ISF-16 scores of 3.9 (SD = 8.0), and a mean reduction of 34.2 (SD = 18.5) in the total PIDAQ score. CPQ11-14-ISF-16 demonstrated poor longitudinal construct validity (p = 0.155). Correlations between the change in total CPQ11-14-ISF-16 scores and change in IOTN-AC assessments were small for both orthodontists (r=-0.084; p = 0.516) and laypeople (r=-0.140; p = 0.225). There were higher associations between the improvement in the Social well-being (SWB) subdomain and improvement in IOTN-AC. Correlations between the changes in total PIDAQ scores and the IOTN-AC assessments, were higher in comparison to the correlations with CPQ11-14-ISF-16 (orthodontists; r = 0.223, laypeople; r = 0.025). There were no adverse effects. Conclusion CPQ11-14-ISF-16 and IOTN-AC measure different attributes. This demonstrated the role of SWB on children OHRQoL. Condition-specific measures (PIDAQ) are more responsive to change in self-reported OHRQoL than generic measures (CPQ11-14-ISF-16) after treatment. Trial Registration: The trial was registered at ClinicalTrials.gov NCT01925924.

Patient-reported outcomes from a phase 2 study of copanlisib in patients with relapsed/refractory indolent B-cell non-Hodgkin lymphoma (iNHL).

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18123-e18123
Author(s):  
Karen N. Keating ◽  
Florian Hiemeyer ◽  
Jose E. Garcia-Vargas ◽  
Barrett H. Childs ◽  
Martin H. Dreyling ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Background Information ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Imaging Results ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

e18123 Background: Information on the degree to which treatment of iNHL impacts health-related quality of life in terms of disease- and treatment-related symptoms is limited. Copanlisib is an investigational pan-Class I phosphatidylinositol 3-kinase (PI3K) inhibitor. In a phase II study in patients with relapsed/refractory iNHL, copanlisib treatment resulted in a high response rate and durable responses. We report here on patient-reported outcomes (PRO) from this trial (NCT01660451, part B). Methods: Patients with 4 subtypes of iNHL were eligible: follicular, marginal zone, small lymphocytic and lymphoplasmacytoid/Waldenstrӧm macroglobulinemia. Patients had to have received ≥2 prior lines of treatment, including rituximab and an alkylating agent. Copanlisib (60 mg, I.V.) was intermittently administered on days 1, 8 and 15 of a 28-day cycle. Health-related quality of life questionnaire FACT-Lym questionnaire (with focus on Total and Lymphoma subscale [FACT-LymS] and LOCF-method applied) was evaluated with Hodges-Lehmann estimate for change in median until week 16, including 95% confidence intervals. EQ-5D and visual analogue scale (EQ-5D VAS) were statistically described. All questionnaires were compiled at baseline and every other cycle in the first year of the study (aligned with radiological imaging). Results: A total of 141 iNHL patients were treated, with completed questionnaires received from 132 patients at baseline and 86 at week 16. The mean±SD (and median) for FACT-Lym LymS score at baseline was 45.27 ± 9.55 (46.5), and 47.20 ± 8.69 (49.0) at 16 weeks. The estimated change in median was +1.0 with 95% CI: [0.5; 2.5] and min: -13.0, max: 23.0, representing an improvement in lymphoma-related symptoms. Accordingly, the FACT-Lym total score was 126.59 ± 22.96 (127.5) at baseline and 127.99 ± 23.60 (130.8) at 16 weeks. Estimated change in median was 0.0 with 95% CI: [-0.5; 3.2] and min: -38.0, max 42.5. Conclusions: This study demonstrated the favorable impact of copanlisib treatment on disease-related symptoms and HRQoL in patients with relapsed/refractory iNHL.

scholarly journals Lived Experiences of Adolescent Athletes Following Sport-Related Concussion

2017 ◽  
Vol 5 (12) ◽  
pp. 232596711774503 ◽  
Author(s):  
Tamara C. Valovich McLeod ◽  
Alyssa J. Wagner ◽  
Cailee E. Welch Bacon
Keyword(s):  
Quality Of Life ◽  
Emotional Health ◽  
Well Being ◽  
Health Related Quality ◽  
Adolescent Athletes ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Interscholastic Athletes

Background: Previous studies have identified the effect of sport-related concussion on health-related quality of life through the use of patient-reported outcome measures. However, there has been little research exploring the underlying mechanisms that influence these perceptions of health-related quality of life among adolescent athletes who have sustained a sport-related concussion. Purpose: To explore the psychosocial aspects of concussion among adolescent athletes. Study Design: Case series; Level of evidence, 4. Methods: A total of 12 interscholastic athletes (4 girls, 8 boys; mean ± SD age, 15.7 ± 1.7 years; grade level, 10.2 ± 1.4) were interviewed via a semistructured interview protocol between 15 and 30 days postinjury. Data analysis was guided by the consensual qualitative research tradition. Themes and categories emerged through consensus by a 3-person research team, and bias was minimized through the use of multiple-analyst triangulation. Results: Participants identified numerous postconcussion symptoms that resulted in increasing difficulty with emotions (eg, irritable, easily frustrated), roles at school (eg, concentration difficulties, fatigue), and roles in their social environment (eg, letting the team down, not being able to contribute to sport). As a result, participants expressed how they tried to minimize or mask symptoms to decrease the potential of being viewed differently by their peers. Conclusion: Adolescent athletes perceived a significant effect of sport-related concussion on numerous areas of psychosocial and emotional health and well-being. Anticipatory guidance—with education regarding the possible signs and symptoms, risk factors, and recovery expectations following a concussion—is important to include in postinjury management. A better understanding of sport-related concussion and expected recovery could help to improve perceptions of this injury among interscholastic athletes. Additionally, best practices should be identified to assist health care professionals and school personnel in the development of temporary adjustments or formal academic adjustment policies in the secondary school setting, therefore ensuring that the patients receive the support that they need to maintain their roles as students.

scholarly journals Oral health–related quality of life in Dutch children with cleft lip and/or palate

2011 ◽  
Vol 81 (5) ◽  
pp. 865-871 ◽  
Author(s):  
Annemieke Bos ◽  
Charlotte Prahl
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Well Being ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Objective: To investigate the oral health–related quality of life (OH-RQoL) of Dutch cleft lip and palate patients. It was hypothesized that (1) there is no difference between cleft patients' and their parents' reports of patients' OH-RQoL; (2) there are no gender differences; (3) there are no differences in OH-RQoL between cleft patients with regard to their symptoms; and (4) there is no difference between patients above and below 12 years of age. Materials and Methods: The sample consisted of 122 patients with clefts (age range, 8–15 years) and their parents. Respondents were recruited from the cleft palate team of Amsterdam. They completed the Child Oral Health–Related Quality of Life questionnaire (COHIP). Items were divided into five different subscales, and scores on all subscales were compared between and within groups. Results: Patients' and parents' perceptions differed significantly on three of the five subscales. Girls and boys did not differ significantly with regard to their perception of reported OH-RQoL. The cleft lip and cleft lip and alveolus [CL(A)] subgroup scored significantly higher on the functional well-being subscale. The cleft patients aged 12 years and older scored significantly lower on the emotional well-being and oral symptoms subscales when compared with their younger peers. Conclusions: Only the second hypothesis was not rejected in this study. This means that parents are not interchangeable with regard to reporting on their children's perceptions related to OH-RQoL, that OH-RQoL changes with age, and that it is important that subgroups are respected when investigating OH-RQoL in cleft patients.

scholarly journals Reliability and validity of the Korean version of the MacNew heart disease Health-related Quality of Life questionnaire

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Sun Hyoung Bae ◽  
Myeong-Ho Yoon ◽  
Jin-Hee Park
Keyword(s):  
Quality Of Life ◽  
Heart Disease ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Validity And Reliability ◽  
Sf 36 ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract Background Myocardial infarction and unstable angina are prevalent in Korea. The MacNew Heart Disease health-related quality of life questionnaire is a widely used patient-reported outcome measure for patients with heart disease in several countries. In this study, we tested the validity and reliability of the Korean version of the MacNew (K-MacNew). Methods Participants were 200 patients who had experienced unstable angina or myocardial infarction, and were recruited from a tertiary hospital in Korea. The K-MacNew was developed using forward–backward translation techniques. Construct validity (including discriminative validity), concurrent validity, and internal consistency reliability of the K-MacNew were assessed. Discriminative validity was assessed by examining the between-group differences in the K-MacNew scores according to functional capacity, anxiety, and depression levels. Concurrent validity was examined by correlating the K-MacNew dimensions with the physical and mental health domains of the 36-item Short Form Health Survey Instrument (SF-36). Results Factor analysis results of the K-MacNew demonstrated a three-factor structure (emotional, physical, and social) that explained 57.92% of the variance. Significant differences in the K-MacNew scores were observed according to patients’ functional capacity, anxiety, and depression levels. The SF-36 physical health domain score showed a moderate positive correlation with the physical dimension score of the K-MacNew (r = 0.517, P < 0.001), and the SF-36 mental health domain score showed a strong positive correlation with the emotional dimension of K-MacNew (r = 0.745, P < 0.001). The K-MacNew showed good internal consistency, with a Cronbach’s α of 0.947 for the global scale. Conclusion The K-MacNew demonstrated good reliability and validity for use as a patient-reported outcome measure and is ready for the assessment of the health-related quality of life of patients with coronary artery disease in Korea. To establish the clinical validity of the K-MacNew, additional studies should be conducted to verify the validity and reliability of the K-MacNew in a number of participants, including those with various types of coronary artery disease.

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