scholarly journals A qualitative exploration of the experience and quality of life of patients, and their family carers, admitted to a specialist eye hospital with microbial keratitis

2020 ◽  
Author(s):  
Shelley Anne Tranter ◽  
Maria Cabreras-Aguas ◽  
Mandy Riddell ◽  
Joanna McCulloch ◽  
Therese Riley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Carers ◽  
Microbial Keratitis ◽  
Structured Interviews ◽  
Post Discharge ◽  
Convenience Sample ◽  
Family Work ◽  
Related Quality

Abstract Background: Microbial keratitis is a vision-threatening condition requiring intensive treatment. Understanding patients’ and carers’ experience during and after hospitalisation can inform improvements in care and outcomes. This study explored the vision-related quality of life, and the experiences of patients with microbial keratitis and their family carers when admitted to a quaternary referral eye hospital in AustraliaMethods: The study employed mixed methods, including qualitative interviews and a survey in hospital and a telephone interview post-discharge. A convenience sample was recruited of 33 patients with microbial keratitis who presented to hospital between March and October 2017, and 10 of their family carers. Semi-structured interviews were audiotaped, transcribed verbatim, coded and analysed using thematic analysis. Patient participants completed the National Eye Institute Visual Functioning Questionnaire – 25 (NEIVFQ-25).Results: Qualitative analyses identified two main themes: Saving sight, with subthemes of costs of saving sight, and travel and transportation; Safe-guarding home and normal life with subthemes of family, work and pastimes. A group mean NEIVFQ-25 score of 74 was similar to other ophthalmic disease groups but pain scores were higher.Conclusion: Findings provide insights into the experiences and often unspoken concerns of microbial keratitis patients and their family carers, revealing the priority and the associated costs of saving sight, and the implications for family and lifestyles. These patients reported similarly reduced vision-related quality of life but greater pain compared to other ophthalmic groups. Findings point to ways to improve their experience and potentially reduce the high rates of unplanned representations of this patient group.

scholarly journals A qualitative exploration of the experience and quality of life of patients, and their family carers, admitted to a specialist eye hospital with microbial keratitis

2019 ◽  
Author(s):  
Shelley Anne Tranter ◽  
Maria Careras-Aguas ◽  
Mandy Riddell ◽  
Joanna McCulloch ◽  
Therese Riley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Carers ◽  
Microbial Keratitis ◽  
Structured Interviews ◽  
Post Discharge ◽  
Convenience Sample ◽  
Family Work ◽  
Related Quality

Abstract Background Microbial keratitis is a vision-threatening condition requiring intensive treatment. Understanding patients’ and carers’ experience during and after hospitalisation can inform improvements in care and outcomes. This study explored the vision-related quality of life, and the experiences of patients with microbial keratitis and their family carers when admitted to a quaternary referral eye hospital in Australia Methods The study employed mixed methods, including qualitative interviews and a survey in hospital and a telephone interview post-discharge. A convenience sample was recruited of 33 patients with microbial keratitis who presented to hospital between March and October 2017, and 10 of their family carers. Semi-structured interviews were audiotaped, transcribed verbatim, coded and analysed using thematic analysis. Patient participants completed the National Eye Institute Visual Functioning Questionnaire – 25 (NEIVFQ-25). Results Qualitative analyses identified two main themes: Saving sight, with subthemes of costs of saving sight, and travel and transportation; Safe-guarding home and normal life with subthemes of family, work and pastimes. A group mean NEIVFQ-25 score of 74 was similar to other ophthalmic disease groups but pain scores were higher. Conclusion Findings provide insights into the experiences and often unspoken concerns of microbial keratitis patients and their family carers, revealing the priority and the associated costs of saving sight, and the implications for family and lifestyles. These patients reported similarly reduced vision-related quality of life but greater pain compared to other ophthalmic groups. Findings point to ways to improve their experience and potentially reduce the high rates of unplanned representations of this patient group.

scholarly journals A qualitative exploration of the experience and quality of life of patients, and their family carers, admitted to a specialist eye hospital with microbial keratitis

2019 ◽  
Author(s):  
Shelley Anne Tranter ◽  
Maria Careras-Aguas ◽  
Mandy Riddell ◽  
Joanna McCulloch ◽  
Therese Riley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Carers ◽  
Microbial Keratitis ◽  
Structured Interviews ◽  
Post Discharge ◽  
Convenience Sample ◽  
Family Work ◽  
Related Quality

Abstract Background: Microbial keratitis is a vision-threatening condition requiring intensive treatment. Understanding patients’ and carers’ experience during and after hospitalisation can inform improvements in care and outcomes. This study explored the vision-related quality of life, and the experiences of patients with microbial keratitis and their family carers when admitted to a quaternary referral eye hospital in Australia Methods: The study employed mixed methods, including qualitative interviews and a survey in hospital and a telephone interview post-discharge. A convenience sample was recruited of 33 patients with microbial keratitis who presented to hospital between March and October 2017, and 10 of their family carers. Semi-structured interviews were audiotaped, transcribed verbatim, coded and analysed using thematic analysis. Patient participants completed the National Eye Institute Visual Functioning Questionnaire – 25 (NEIVFQ-25). Results: Qualitative analyses identified two main themes: Saving sight, with subthemes of costs of saving sight, and travel and transportation; Safe-guarding home and normal life with subthemes of family, work and pastimes. A group mean NEIVFQ-25 score of 74 was similar to other ophthalmic disease groups but pain scores were higher. Conclusion: Findings provide insights into the experiences and often unspoken concerns of microbial keratitis patients and their family carers, revealing the priority and the associated costs of saving sight, and the implications for family and lifestyles. These patients reported similarly reduced vision-related quality of life but greater pain compared to other ophthalmic groups. Findings point to ways to improve their experience and potentially reduce the high rates of unplanned representations of this patient group.

scholarly journals A Qualitative Exploration of the Experience and Quality of Life of Patients, and their Family Carers, Admitted to a Specialist Eye Hospital with Microbial Keratitis

2020 ◽  
Author(s):  
Shelley Anne Tranter ◽  
Maria Cabrera-Aguas ◽  
Mandy Lee Riddell ◽  
Joanna McCulloch ◽  
Therese Riley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Carers ◽  
Microbial Keratitis ◽  
Structured Interviews ◽  
Post Discharge ◽  
Convenience Sample ◽  
Family Work ◽  
Related Quality

Abstract Background: Microbial keratitis is a vision-threatening condition requiring intensive treatment. Understanding patients’ and carers’ experience during and after hospitalisation can inform improvements in care and outcomes. This study explored the vision-related quality of life, and the experiences of patients with microbial keratitis and their family carers when admitted to a quaternary referral eye hospital in Australia Methods: The study employed mixed methods, including qualitative interviews and a survey in hospital and a telephone interview post-discharge. A convenience sample was recruited of 33 patients with microbial keratitis who presented to hospital between March and October 2017, and 10 of their family carers. Semi-structured interviews were audiotaped, transcribed verbatim, coded and analysed using thematic analysis. Patient participants completed the National Eye Institute Visual Functioning Questionnaire – 25 (NEIVFQ-25).Results: Qualitative analyses identified two main themes: Saving sight, with subthemes of costs of saving sight, and travel and transportation; Safe-guarding home and normal life with subthemes of family, work and pastimes. A group mean NEIVFQ-25 score of 74 was similar to other ophthalmic disease groups but pain scores were higher.Conclusion: Findings provide insights into the experiences and often unspoken concerns of microbial keratitis patients and their family carers, revealing the priority and the associated costs of saving sight, and the implications for family and lifestyles. These patients reported similarly reduced vision-related quality of life but greater pain compared to other ophthalmic groups. Findings point to ways to improve their experience and potentially reduce the high rates of unplanned representations of this patient group.

scholarly journals Acceptability and Feasibility of a Mindfulness Intervention Delivered via Videoconferencing for People With Parkinson’s

2021 ◽  
pp. 089198872098890
Author(s):  
Angeliki Bogosian ◽  
Catherine S. Hurt ◽  
John V. Hindle ◽  
Lance M. McCracken ◽  
Debora A. Vasconcelos e Sa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cost Effectiveness ◽  
Qualitative Interviews ◽  
Quality Adjusted Life Year ◽  
Secondary Outcome ◽  
Structured Interviews ◽  
Potential Cost ◽  
Mindfulness Intervention ◽  
Related Quality

Mindfulness-based group therapy is a rapidly growing psychological approach that can potentially help people adjust to chronic illness and manage unpleasant symptoms. Emerging evidence suggests that mindfulness-based interventions may benefit people with Parkinson’s. The objective of the paper is to examine the appropriateness, feasibility, and potential cost-effectiveness of an online mindfulness intervention, designed to reduce anxiety and depression for people with Parkinson’s. We conducted a feasibility randomized control trial and qualitative interviews. Anxiety, depression, pain, insomnia, fatigue, impact on daily activities and health-related quality of life were measured at baseline, 4, 8, and 20 weeks. Semi-structured interviews were conducted at the end of the intervention. Participants were randomized to the Skype delivered mindfulness group (n = 30) or wait-list (n = 30). Participants in the mindfulness group were also given a mindfulness manual and a CD with mindfulness meditations. The intervention did not show any significant effects in the primary or secondary outcome measures. However, there was a significant increase in the quality of life measure. The incremental cost-effectiveness ratio was estimated to be £27,107 per Quality-Adjusted Life Year gained. Also, the qualitative study showed that mindfulness is a suitable and acceptable intervention. It appears feasible to run a trial delivering mindfulness through Skype, and people with Parkinson’s found the sessions acceptable and helpful.

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

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

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.

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

2021 ◽  
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

scholarly journals Health-related quality of life among 13–14 year old adolescents with overweight - a mixed methods approach

2019 ◽  
Author(s):  
Turid Kristin Bigum Sundar ◽  
Kirsti Riiser ◽  
Milada Småstuen ◽  
Randi Opheim ◽  
Knut Løndal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Well Being ◽  
Reference Population ◽  
Health Related Quality ◽  
Structured Interviews ◽  
Post Intervention ◽  
Related Quality ◽  
Health Related

Abstract BackgroundOverweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study with the aim of increasing PA, reducing BMI and promoting HRQoL.Methods Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents’ HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13–14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52.ResultsHRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub-scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. ConclusionThe use of the KIDSCREEN 52 instrument gave important indications about the adolescents’ HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL, indicating better ways of providing help. More research using the benefits of mixed methods approaches is needed to further elucidate these findings.

scholarly journals Comparing Differences Between College Students’ Health Perceptions and Health Behaviors

2020 ◽  
Vol 4 (Supplement_2) ◽  
pp. 1341-1341
Author(s):  
Kayla Parsons ◽  
Leigh Neptune ◽  
Onycha Carlson ◽  
Elizabeth Matthews ◽  
Jade McNamara
Keyword(s):  
Quality Of Life ◽  
College Students ◽  
Physical Health ◽  
Online Survey ◽  
Vegetable Intake ◽  
Health Related Quality ◽  
Convenience Sample ◽  
Related Quality ◽  
Health Related

Abstract Objectives The objective of this research was to compare health behavior differences between young adults who perceive their health as excellent or good and those who perceive their health as fair or poor. Methods A cross-sectional, convenience sample of college students was used for the study. Students were recruited via campus email and were asked to complete an online survey consisting of the Center for Disease Control's Health Related Quality of Life (HRQOL) modules, self-reported height and weight which was used to calculate body mass index (BMI), and a food frequency questionnaire to assess fruit and vegetable intake. Independent t-tests were used to assess differences between groups. Results Participants (N = 797) were 20 ± 1.4 years old, the majority were female (65.5%), and white (92.3%). The results showed that students who reported their health as “excellent, very good, or good” (n = 616) versus those that reported their health as “fair or poor” (n = 181) consumed more servings of fruit per day (0.84 ± 0.7 vs. 0.56 ± 0.5, P < 0.001), more servings of vegetables per day (1.6 ± 1.2 vs. 1.3 ± 1.2, P < 0.001) and had a lower BMI (24.2 ± 4.1 vs. 26.1 ± 5.3, P < 0.001). They also had significantly better HRQOL, with reporting more days/month when they were in good physical health (3.9 ± 5.1 vs. 8.2 ± 8.4, P < 0.001), less days/month feeling depressed (6.7 ± 7.7 vs. 15.1 ± 10.4, P < 0.001), more days/month when they were happy/full of energy (12.7 ± 8.3 vs. 6.4 ± 6.1, P < 0.001), and less days/month when they did not get enough sleep (13.0 ± 9.0 vs. 17.8 ± 9.6, P < 0.001), respectively. Conclusions This data shows that students who perceived their general health to be excellent, very good, or good, reported healthier behaviors compared to students who perceived their health to be fair or poor. This research provides justification that college aimed health and wellness initiatives should focus on both mental and physical health of college students in order to shape positive behaviors that impact overall health-related quality of life. Funding Sources Bushway Research Fund, University of Maine.

scholarly journals Health Related Quality Of Life At One Year Post Discharge In Patients With Heart Failure

2014 ◽  
Vol 17 (7) ◽  
pp. A495
Author(s):  
A. Escobar ◽  
Z. Trancho ◽  
de Tejada M. Gonzale-Saenz ◽  
R. Quiros ◽  
Perez L. Garcia ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Health Related Quality ◽  
Post Discharge ◽  
Patients With Heart Failure ◽  
Related Quality ◽  
Health Related ◽  
One Year
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