Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

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Health-related quality of life in patients with hemoglobinopathies

Hematology ◽

10.1182/asheducation.v2012.1.284.3798319 ◽

2012 ◽

Vol 2012 (1) ◽

pp. 284-289 ◽

Cited By ~ 16

Author(s):

Julie A. Panepinto

Keyword(s):

Quality Of Life ◽

Well Being ◽

Health Related Quality ◽

Patient Reported ◽

Related Quality ◽

Health Related ◽

Patients Experience ◽

The Impact ◽

Health And Well Being

Abstract The use of patient-reported outcomes to measure the health and well-being of patients from their perspective has become an acceptable method to determine the impact of a disease and its treatment on patients. In patients with hemoglobinopathies, prior work has demonstrated that patients experience significant impairment in health-related quality of life (HRQL, a type of patient-reported outcome). This work has provided a better understanding of the burden that these patients experience and the factors that are associated with worse HRQL. The recent development of disease-specific HRQL instruments in sickle cell disease heralds new opportunities to explore the impact of the disease and its treatment on patients. The standards necessary to incorporate the measurement of HRQL into clinical trials are now well outlined by regulatory agencies. Measuring HRQL within a clinical practice setting and outside of the healthcare setting while the patient is at home are now possible and present new opportunities to understand the health and well-being of patients with hemoglobinopathies.

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Effect of Augmentative Technology on Communication and Quality of Life After Tracheostomy or Total Laryngectomy

Otolaryngology ◽

10.1177/01945998211013778 ◽

2021 ◽

pp. 019459982110137

Author(s):

Catherine T. Haring ◽

Janice L. Farlow ◽

Marie Leginza ◽

Kaitlin Vance ◽

Anna Blakely ◽

...

Keyword(s):

Quality Of Life ◽

Total Laryngectomy ◽

Electronic Communication ◽

Well Being ◽

Chi Square ◽

Communication Device ◽

Patient Reported ◽

Communication Devices ◽

Related Quality

Objective Surgical procedures that render patients acutely aphonic can cause them to experience significant anxiety and distress. We queried patient perceptions after tracheostomy or laryngectomy and investigated whether introducing augmentative technology was associated with improvement in patient-reported outcomes. Methods Participants included hospitalized patients who acutely lost the ability to speak due to tracheostomy or total laryngectomy from April 2018 to December 2019. We distributed questions regarding the patient communication experience and relevant questions from the validated V-RQOL questionnaire (Voice-Related Quality of Life). Patients were offered a tablet with the electronic communication application Verbally. Pre- and postintervention groups were compared with chi-square analyses. Results Surveys were completed by 35 patients (n = 18, preintervention; n = 17, postintervention). Prior to using augmentative technology, 89% of patients who were aphonic reported difficulty communicating, specifically noting breathing or suctioning (56%), treatment and discharge plans (78%), or immediate needs, such as pain and using the bathroom (39%). Communication difficulties caused anxiety (55%), depression (44%), or frustration (62%), and 92% of patients were interested in using an electronic communication device. Patients reported less trouble communicating after the intervention versus before (53% vs 89%, P = .03), including less difficulty communicating about treatment or discharge plans (35% vs 78%, P < .01). V-RQOL scores were unchanged. Discussion Acute loss of phonation arising from surgery can be highly distressing for patients, and use of augmentative technology may alleviate some of these challenges by improving communication. Further studies are needed to identify what additional strategies may improve overall well-being. Implications for Practice Electronic communication devices may benefit patients with acute aphonia.

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Beyond vision loss: the independent impact of diabetic retinopathy on vision-related quality of life in a Chinese Singaporean population

British Journal of Ophthalmology ◽

10.1136/bjophthalmol-2018-313082 ◽

2018 ◽

Vol 103 (9) ◽

pp. 1314-1319 ◽

Cited By ~ 1

Author(s):

Eva K Fenwick ◽

Ryan E K Man ◽

Alfred Tau Liang Gan ◽

Neelam Kumari ◽

Charlene Wong ◽

...

Keyword(s):

Quality Of Life ◽

Diabetic Retinopathy ◽

Vision Loss ◽

Well Being ◽

Linear Regression Models ◽

Cross Sectional ◽

Significant Difference ◽

Related Quality ◽

The Impact

Background/aimsTo assess the independent impact of diabetic retinopathy (DR) on three domains of vision-related quality of life (VRQoL) in a Chinese Singapore population.MethodsThe Singapore Chinese Eye Study (n=3353; 2009–2011) was a population-based, prospective, cross-sectional study conducted at the Singapore Eye Research Institute. The study population included 292 adults with diabetes, with and without DR. DR (better eye) was categorised as presence and absence of any DR; severity of DR (no vision-threatening DR (VTDR); severe non-proliferative DR (NPDR); PDR and/or clinically significant macular oedema and VTDR). Our main outcome was VRQoL which was measured using Rasch-calibrated scores from the ‘Reading’, ‘Mobility’ and ‘Emotional’ domains of the Impact of Vision Impairment questionnaire. The relationship between DR and VRQoL was assessed using multiple linear regression models.ResultsOf the 292 individuals (mean age 61.35 ± 9.66 years; 55.8% male), 201 (68.8%), 49 (16.8%), 20 (6.8%), 22 (7.5%) and 27 (9.2%) had no DR, minimal-mild NPDR, moderate-severe NPDR, PDR and VTDR, respectively. Any DR and VTDR were independently associated with 6% and 12% worse Reading scores and 7% and 18% poorer Emotional well-being, respectively, compared with those without DR. These associations persisted after separate adjustment for visual impairment and presenting visual acuity. No significant difference was found in the Mobility domain between persons with and without DR.ConclusionsWe documented that DR, particularly VTDR, was independently associated with restrictions in Reading and Emotional well-being. Understanding factors underlying the detrimental DR-VRQoL relationship may optimise rehabilitation outcomes for individuals with DR.

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Health-related Quality of Life in Patients With Recurrent Pericarditis: Results From a Phase 2 Study of Rilonacept

10.21203/rs.3.rs-258868/v1 ◽

2021 ◽

Cited By ~ 1

Author(s):

David Lin ◽

Allan Klein ◽

David Cella ◽

Anna Beutler ◽

Fang Fang ◽

...

Keyword(s):

Quality Of Life ◽

Qualitative Interviews ◽

Phase 2 ◽

Health Related Quality ◽

Recurrent Pericarditis ◽

Phase 2 Trial ◽

Patient Reported ◽

Related Quality ◽

Health Related

Abstract Background: Impact of recurrent pericarditis (RP) on patient health-related quality of life (HRQoL) was evaluated through qualitative patient interviews and as an exploratory endpoint in a Phase 2 trial evaluating the efficacy and safety of rilonacept (IL-1α/IL-1β blocker) to treat RP.Methods: Qualitative interviews were conducted with ten adults with RP to understand symptoms and HRQoL impacts, and the 10-item Patient-Reported Outcomes Measurement Information System Global Health (PROMIS Global) v1.2 was evaluated to determine questionnaire coverage of patient experience. The Phase 2 trial enrolled participants with active symptomatic RP (A-RP, n=16) and corticosteroid-dependent participants with no active recurrence at baseline (CSD-RP, n=9). All participants received rilonacept weekly for 6 weeks during a base treatment period (TP) plus an optional 18-week extension period (EP). Concomitant medications, including corticosteroids (CS), were tapered, if possible, during EP. HRQoL was assessed using the PROMIS Global, and patient-reported pain and blood levels of c-reactive protein (CRP) were also collected at Baseline and follow-up periods. Results: Information from qualitative interviews demonstrated that PROMIS GH concepts are relevant to adults with RP. From the Phase 2 trial, both participant groups showed impacted HRQoL at Baseline [mean PROMIS Global Physical Health (GPH) and Global Mental Health (GMH), were lower than population norm average]. In A-RP, GPH/MPH improved by end of base TP and were sustained through EP (similar trends were observed for pain and CRP). Similarly, in CSD-RP, GPH/MPH improved by end of TP and further improved at EP, during CS tapering or discontinuation, without disease recurrence (low pain scores and CRP levels continued during the TP and EP). Conclusion: This is the first study demonstrating impaired HRQoL in RP. Rilonacept treatment was associated with HRQoL improvements using PROMIS GH scores. Maintained/improved HRQoL during tapering/withdrawal of CS without recurrence suggests that rilonacept may provide an alternative to corticosteroids. Trial Registration: ClinicalTrials.Gov; NCT03980522; 5 June 2019, retrospectively registered; https://clinicaltrials.gov/ct2/show/NCT03980522

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

Oman Medical Journal ◽

10.5001/omj.2021.109 ◽

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.

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

Neurology ◽

10.1212/wnl.0000000000005643 ◽

2018 ◽

Vol 90 (23) ◽

pp. e2034-e2041 ◽

Cited By ~ 4

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.

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Health-Related Quality of Life Measurement in Public Health

Annual Review of Public Health ◽

10.1146/annurev-publhealth-052120-012811 ◽

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.

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P1062EXPANDED DIALYSIS (HDX): IS THERE AN IMPACT ON PATIENT REPORTED SYMPTOM?

Nephrology Dialysis Transplantation ◽

10.1093/ndt/gfaa142.p1062 ◽

2020 ◽

Vol 35 (Supplement_3) ◽

Author(s):

Jarrin Penny ◽

Fabio R Salerno ◽

Lisa Hur ◽

Christopher McIntyre

Keyword(s):

Quality Of Life ◽

Clinical Outcomes ◽

Symptom Burden ◽

Well Being ◽

Response To Therapy ◽

High Flux ◽

Patient Reported ◽

Dialysis Membranes ◽

The Impact

Abstract Background and Aims High flux dialysis membranes sufficiently remove smaller sized uremic toxins however, the accumulation and retention of larger middle molecular weight toxins, which are associated with chronic inflammation, cardiovascular disease and suboptimal outcomes are poorly cleared. The recent advent of medium-cut-off dialysis membranes, labelled “expanded dialysis” (HDx) are permeable to molecules of larger size responsible for poor clinical outcomes. However, it remains unclear if HDx can directly impact the symptoms associated with hemodialysis (HD). Symptom burden plays a significant role in quality of life (QOL) and mortality rates in the HD population. The London Evaluation of Illness (LEVIL), an application-based platform has been developed to measure patient reported outcomes (PROM). In comparison to cross-sectional PROM’s, LEVIL more accurately represents the fluctuations in daily symptoms and the impact of intervention. LEVIL evaluates general well-being, energy, sleep, appetite, pain and breathing, all of which are outcomes of interest on symptom burden in chronic kidney disease. Our aim was to determine if HDx therapy had any effect on symtoms/QOL domains using LEVIL. Method 28 patients from two dialysis centers in London Ontario were consented to participate. Patients were required to be over 18 years of age and on conventional thrice weekly maintenance HD for at least three months. 23 participants completed study and analyzed (five lost for various reasons). Baseline (BL) symptom characteristics were obtained while using high flux membrane for two weeks. Symptoms continued to be measured throughout the 12 weeks of HDx therapy two-three times weekly using LEVIL. Laboratory biomarkers including beta-2 microglobulin and free-light chains were collected at baseline and after 12 weeks of HDx therapy. Results Patients were stratified into tertiles (high/middle/low) using mean values of BL symptoms scores in each domain (wellbeing, energy, sleep, appetite, pain, breathing). Those in the high BL group were labeled as “control”. Low and middle BL measures were further stratified into responders vs. non-responders (responders were considered to have a 50% increase in any symptom domain by ≥50%). Of those domains which responded to HDx, 76% also had low BL scores with 27% having middle BL scores. General wellbeing, energy and sleep were domains with the greatest response reaching statistical significance after eight weeks of therapy. HDx had limited effect on appetite, pain and breathing. Although stratification was per domain, overall, 74% of the population studied did respond in at least one domain, with some responding in as many as five. Conclusion HDx using Theranova (Baxter) shows the most benefit in domains with low BL measures. Additionally, not everyone who had low BL scores responded after 12 weeks of therapy, leaving us to question whether HDx may have a latent effect in some individuals/populations. Those who had no response to therapy in certain domains also had greater baseline quality of life respectively. This information may assist in decision making/rationale for the utilization and implementation of such therapy. Although more work is required to further stratify symptoms in relation to demographic/biochemical finding and clinical outcomes. It is evident that HDx improves patient reported symptoms and QOL.

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Health-related Quality of Life and Its Predictors in Korean Patients with Myocardial Infarction in the Acute Phase

Clinical Nursing Research ◽

10.1177/1054773819894692 ◽

2019 ◽

pp. 105477381989469 ◽

Cited By ~ 1

Author(s):

Kyoungrim Kang ◽

Leila Gholizadeh ◽

Hae-Ra Han

Keyword(s):

Quality Of Life ◽

Myocardial Infarction ◽

Acute Phase ◽

Well Being ◽

Health Related Quality ◽

Korean Patients ◽

Related Quality ◽

Health Related ◽

The Impact

This study aims to investigate health-related quality of life (HRQoL) of Korean patients in the acute phase of myocardial infarction (MI) and correlates of this important patient outcome. A total of 150 patients with recent MI were recruited. The Korean version of the MacNew Quality of Life after Myocardial Infarction Questionnaire was used to assess their HRQoL. Demographic, behavioural and disease-related factors were also assessed and the Depression, Anxiety and Stress Scale (DASS 21) was used for psychological well-being. Participants who had a higher education level and better financial status had better HRQoL. Diabetes, history of stroke, other heart disease and a higher score of the DASS 21 were adversely associated with HRQoL. The findings of this study help identify risk factors that are related to lower HRQoL after MI. Early psychological and financial support may help reduce the impact of MI on patients’ overall health and quality of life.

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The impact of pregnancy on women’s oral health-related quality of life: a qualitative investigation

BMC Oral Health ◽

10.1186/s12903-020-01290-5 ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

Omid Fakheran ◽

Mahmoud Keyvanara ◽

Zahra Saied-Moallemi ◽

Abbasali Khademi

Keyword(s):

Quality Of Life ◽

Oral Health ◽

Pregnant Women ◽

Social Life ◽

Well Being ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

The Impact

Abstract Background Complex psychological and physiological changes occur in women’s body during pregnancy. These changes affect both oral health status and oral health-related quality of life (OHRQoL). In almost all of the previous cross-sectional design studies on pregnant women, generic OHRQoL instruments have been used to measure OHRQoL. While such instruments may be reliable, they may not be appropriate to evaluate the OHRQoL in special populations like pregnant women. The purpose of this study was to investigate the self-perceived factors affecting the OHRQoL among pregnant women. Methods In this qualitative descriptive study, twenty- seven pregnant women were recruited from four healthcare centers located in Isfahan city, Iran. The interpretative phenomenological analysis was used to collect and analyze the data. Four criteria of credibility, dependability, transferability, and confirmability were implemented through established procedures to confirm the study rigor. Results Three major themes and six sub-themes capturing the impacts of pregnancy on women’s OHRQoL were identified. They covered all areas of life, including daily life, psychological well-being, social life, physical impact, and also barriers to utilization of dental care services. Some new domains such as “dentists’ refusal to treat pregnant women”, “negative feelings about pregnancy” and “concerns about fetal health” were found as important factors which could influence the OHRQoL during pregnancy. Conclusion The findings help to better understand the oral health issues impacting women during pregnancy and to achieve person-centered care and improved oral health outcomes in pregnant women. The conceptual framework created based on the results of this study may help health care workers and policy makers for improving the health of pregnant women.

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