scholarly journals Validation of a simple disease-specific, quality-of-life measure for diabetic polyneuropathy

Neurology ◽  
2018 ◽  
Vol 90 (23) ◽  
pp. e2034-e2041 ◽  
Author(s):  
Kelly G. Gwathmey ◽  
Reza Sadjadi ◽  
William B. Horton ◽  
Mark R. Conaway ◽  
Carolina Barnett-Tapia ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Diabetic Polyneuropathy ◽  
Well Being ◽  
Ease Of Use ◽  
Sensorimotor Polyneuropathy ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

ObjectiveWe studied the performance of a 15-item, health-related quality-of-life polyneuropathy scale in the clinic setting in patients with diabetic distal sensorimotor polyneuropathy (DSPN).MethodsPatients with DSPN from 11 academic sites completed a total of 231 Chronic Acquired Polyneuropathy Patient-Reported Index (CAPPRI) scales during their clinic visits. Conventional and modern psychometric analyses were performed on the completed forms.ResultsConventional and modern analyses generally indicated excellent psychometric properties of the CAPPRI in patients with DSPN. For example, the CAPPRI demonstrated unidimensionality and performed like an interval-level scale.ConclusionAttributes of the CAPPRI for DSPN include ease of use and interpretation; unidimensionality, allowing scores to be summed; adequate coverage of disease severity; and the scale's ability to address relevant life domains. Furthermore, the CAPPRI is free and in the public domain. The CAPPRI may assist the clinician and patient with DSPN in estimating disease-specific quality of life, especially in terms of pain, sleep, psychological well-being, and everyday function. The CAPPRI may be most useful in the everyday clinical setting but merits further study in this setting, as well as the clinical trial setting.

scholarly journals Health-Related Quality of Life of Patients with Multiple Sclerosis in Oman – A CrossSectional Study

2021 ◽  
Author(s):  
Jansirani Natarajan ◽  
Mickael Antoine Joseph ◽  
Abdullah Al Asmi ◽  
Gerald Amandu Matua ◽  
Jaber Al Khabouri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Process ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Disease Specific

Objectives: Multiple sclerosis is a disabling neurological disorder with significant negative effects on patients’ quality of life. Despite the increased prevalence of multiple sclerosis in Arabian Gulf countries in recent years, no study has assessed the impact of multiple sclerosis on the healthrelated quality of life of Omani patients. Therefore, the objectives of the current study was to assess the impact of multiple sclerosis on the health-related quality of life of Omani patients using the validated disease-specific self-administered MusiQoL instrument. Methods: A cross-sectional descriptive study was carried out between April and December 2019 on 177 Omani patients with multiple sclerosis attending two major hospitals in Oman. Patients’ health-related quality of life was assessed using the validated disease-specific self-administered MusiQoL instrument. Results: Majority (51.4%) of the patients had poor HRQOL and 48.6% had moderate HRQOL. We found that being older than 30 years, a female, married, separated, widowed, or divorced, and having visual and sleep problems had poorer health-related quality of life. Among the different health-related quality of life components, relationship with the healthcare system and relationship with family and friends were the most affected because of the disease process. Our results also showed that psychological well-being and coping domains of MusiQoL questionnaires are significantly reduced in females as compared to males. Conclusion: Understanding the health-related quality of life of Omanis with multiple sclerosis provides valuable knowledge that could help optimize the management of this disease.

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 Construction and validation of the chronic acquired polyneuropathy patient-reported index (CAP-PRI): A disease-specific, health-related quality-of-life instrument

2015 ◽  
Vol 54 (1) ◽  
pp. 9-17 ◽  
Author(s):  
Kelly G. Gwathmey ◽  
Mark R. Conaway ◽  
Reza Sadjadi ◽  
Amruta Joshi ◽  
Carolina Barnett ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Life Instrument ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific ◽  
Specific Health

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 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.

Expressed emotion, depression, and survival in patients diagnosed with hepatobiliary carcinoma

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e20597-e20597
Author(s):  
J. L. Steel ◽  
J. Hammond ◽  
B. I. Carr ◽  
T. C. Gamblin
Keyword(s):  
Quality Of Life ◽  
Emotional Expression ◽  
Expressed Emotion ◽  
Cox Regression ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

e20597 Background: The aims of the present study were to (1) investigate the association between expressed emotion, health related quality of life, and depression, and (2) explore the association between expressed emotion and survival in patients diagnosed with hepatobiliary carcinoma. Methods: The study was prospective in design. Ninety-six patients diagnosed with hepatobiliary carcinoma were administered a battery of questionnaires that measured depression, health-related quality of life, and expressed emotion. Medical chart review was used to gather disease specific information. Mann Whitney U and Kruskal Wallis tests were performed to test differences between groups and Cox regression analyses were performed to test predictors of survival. Results: At diagnosis, 54% of the patients reported a CES-D score ≥ 16 (clinical range). Patients who reported CES-D scores in the clinical range were found to have significantly lower overall health related quality of life (Mann Whitney U= 506, p = 0.003) and in particular lower emotional (Mann Whitney U=551, = 0.009) and functional well being (Mann Whitney U=507.5, p = 0.003). Patients who reported CES-D scores in the clinical range also reported a higher frequency of cancer-related symptoms (Mann Whitney U=503.5, p= 0.002) at diagnosis using the FACT-Hepatobiliary module. Patients who reported lower levels of emotional expression were found to have higher levels of depression (Mann Whitney U-6.6, p=0.04) and lower social and family well-being (Mann Whitney U=6.4, p=0.04). Using Cox regression, sociodemographic and disease-specific characteristics, depression, and expressed emotion were entered into a model. Significant predictors of survival included greater number of lesions (p=0.04), larger size of tumor (p=0.02), and lower levels of emotional expression (p=0.03). Conclusions: Preliminary findings suggest that patients with low levels of emotional expression reported higher rates of depression, poorer quality of life, and shorter survival. Interventions should be developed to treat symptoms of depression to improve quality of life. Expression of both positive and negative emotions should be encouraged by health care professionals. No significant financial relationships to disclose.

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 Non-disease specific patient-reported outcome measures of health-related quality of life in juvenile idiopathic arthritis: a systematic review of current research and practice

2021 ◽  
Author(s):  
Justyna Młyńczyk ◽  
Paweł Abramowicz ◽  
Maciej K. Stawicki ◽  
Jerzy Konstantynowicz
Keyword(s):  
Quality Of Life ◽  
Juvenile Idiopathic Arthritis ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

AbstractJuvenile idiopathic arthritis (JIA), as a chronic condition, is associated with symptoms negatively impacting health-related quality of life (HRQL). Regarding growing interest in the implementation of the patient-reported outcome measures (PROMs), we aimed to review the non-disease specific PROMs addressing HRQL assessment, potentially useful in the clinical care of JIA and daily practice. A systematic literature search was conducted using MEDLINE/PubMed, Google Scholar, Scopus and Embase databases (1990 to 2021), with a focus on the recent 5-years period. Entry keywords included the terms: “children”, “adolescents”, “JIA”, “chronic diseases”, “HRQL”, “PROMs” and wordings for the specific tools. Several available PROMs intended to measure HRQL, non-specific to JIA, were identified. The presented outcomes differed in psychometric properties, yet all were feasible in assessing HRQL in healthy children and those with chronic diseases. Both EQ-5D-Y and PedsQL have already been tested in JIA, showing relevant reliability, validity, and similar efficiency as disease-specific measurements. For PROMIS® PGH-7 and PGH-7 + 2, such validation and cross-cultural adaptation need to be performed. Considering the future directions in pediatric rheumatology, the large-scale implementation of PROMIS® PGH-7 and PGH-7 + 2 in JIA offers a particularly valuable opportunity. The PROMs reflect the patient perception of the chronic disease and allow to understand child’s opinions. The PROMs may provide an important element of the holistic medical care of patients with JIA and a standardized tool for clinical outcomes, monitoring disease severity and response to treatment.

scholarly journals Yoga & Cancer Interventions: A Review of the Clinical Significance of Patient Reported Outcomes for Cancer Survivors

2012 ◽  
Vol 2012 ◽  
pp. 1-17 ◽  
Author(s):  
S. Nicole Culos-Reed ◽  
Michael J. Mackenzie ◽  
Stephanie J. Sohl ◽  
Michelle T. Jesse ◽  
Ashley N. Ross Zahavich ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Clinical Significance ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Clinically Significant

Limited research suggests yoga may be a viable gentle physical activity option with a variety of health-related quality of life, psychosocial and symptom management benefits. The purpose of this review was to determine the clinical significance of patient-reported outcomes from yoga interventions conducted with cancer survivors. A total of 25 published yoga intervention studies for cancer survivors from 2004–2011 had patient-reported outcomes, including quality of life, psychosocial or symptom measures. Thirteen of these studies met the necessary criteria to assess clinical significance. Clinical significance for each of the outcomes of interest was examined based on 1 standard error of the measurement, 0.5 standard deviation, and relative comparative effect sizes and their respective confidence intervals. This review describes in detail these patient-reported outcomes, how they were obtained, their relative clinical significance and implications for both clinical and research settings. Overall, clinically significant changes in patient-reported outcomes suggest that yoga interventions hold promise for improving cancer survivors' well-being. This research overview provides new directions for examining how clinical significance can provide a unique context for describing changes in patient-reported outcomes from yoga interventions. Researchers are encouraged to employ indices of clinical significance in the interpretation and discussion of results from yoga studies.

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