scholarly journals Quality of life in coeliac disease: qualitative interviews to develop candidate items for the Coeliac Disease Assessment Questionnaire

2018 ◽  
Vol Volume 9 ◽  
pp. 211-220 ◽  
Author(s):  
Helen Crocker ◽  
Crispin Jenkinson ◽  
Michele Peters
Keyword(s):  
Quality Of Life ◽  
Coeliac Disease ◽  
Qualitative Interviews ◽  
Disease Assessment ◽  
Assessment Questionnaire

Contact precautions for colonisation with multidrug-resistant organisms and haemodialysis patient quality of life and mood: a pilot case-control study

2019 ◽  
pp. 19-25 ◽  
Author(s):  
Rathika Krishnasamy
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Social Function ◽  
Multidrug Resistant ◽  
Contact Precautions ◽  
Dialysis Vintage ◽  
Multidrug Resistant Organisms ◽  
And Gender ◽  
The Impact

Background: The rate of multidrug-resistant organisms (MDRO) colonisation in dialysis populations has increased over time. This study aimed to assess the effect of contact precautions and isolation on quality of life and mood for haemodialysis (HD) patients colonised with MDRO. Methods: Patients undergoing facility HD completed the Kidney Disease Quality of Life (KDQOL–SFTM), Beck Depression Inventory (BDI) and Personal Wellbeing-Index Adult (PWI-A). Patients colonised with MDRO were case-matched by age and gender with patients not colonised. Results: A total of 16 MDRO-colonised patients were matched with 16 controls. Groups were well matched for demographics and co-morbidities, other than a trend for older dialysis vintage in the MDRO group [7.2 years (interquartile range 4.6–10.0) compared to 3.2 (1.4–7.6) years, p=0.05]. Comparing MDRO-positive with negative patients, physical (30.5±10.7 vs. 34.6±7.3; p=0.2) and mental (46.5±11.2 vs. 48.5±12.5; p = 0.6) composite scores were not different between groups. The MDRO group reported poorer sleep quality (p=0.01) and sleep patterns (p=0.05), and lower social function (p=0.02). BDI scores were similar (MDRO-positive 10(3.5–21.0) vs. MDRO-negative 12(6.5–16.0), p=0.6). PWI-A scores were also similar in both groups; however, MDRO patients reported lower scores for “feeling safe”, p=0.03. Conclusion: While overall scores of quality of life and depression were similar between groups, the MDRO group reported poorer outcomes in sleep and social function. A larger cohort and qualitative interviews may give more detail of the impact of contact precautions and isolation on HD patients. The necessity for contact precautions for different MDRO needs consideration.

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 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 The impact of symptoms on quality of life before and after diagnosis of coeliac disease: the results from a Polish population survey and comparison with the results from the United Kingdom

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Emilia Majsiak ◽  
Magdalena Choina ◽  
Dominik Golicki ◽  
Alastair M. Gray ◽  
Bożena Cukrowska
Keyword(s):  
Quality Of Life ◽  
United Kingdom ◽  
Coeliac Disease ◽  
Gluten Free Diet ◽  
Gluten Free ◽  
The United Kingdom ◽  
Before And After ◽  
The Mean ◽  
The Uk

Abstract Background Coeliac disease (CD) is characterised by diverse clinical symptoms, which may cause diagnostic problems and reduce the patients’ quality of life. A study conducted in the United Kingdom (UK) revealed that the mean time between the onset of coeliac symptoms and being diagnosed was above 13 years. This study aimed to analyse the diagnostic process of CD in Poland and evaluate the quality of life of patients before and after CD diagnosis. In addition, results were compared to the results of the original study conducted in the UK. Methods The study included 2500 members of the Polish Coeliac Society. The patients were asked to complete a questionnaire containing questions on socio-demographic factors, clinical aspects and quality of life, using the EQ-5D questionnaire. Questionnaires received from 796 respondents were included in the final analysis. Results The most common symptoms reported by respondents were bloating (75%), abdominal pain (72%), chronic fatigue (63%) and anaemia (58%). Anaemia was the most persistent symptom, with mean duration prior to CD diagnosis of 9.2 years, whereas diarrhoea was observed for the shortest period (4.7 years). The mean duration of any symptom before CD diagnosis was 7.3 years, compared to 13.2 years in the UK. CD diagnosis and the introduction of a gluten-free diet substantially improved the quality of life in each of the five EQ-5D-5L health dimensions: pain and discomfort, anxiety and depression, usual activities, self-care and mobility (p < 0.001), the EQ-Index by 0.149 (SD 0.23) and the EQ-VAS by 30.4 (SD 28.3) points. Conclusions Duration of symptoms prior to the diagnosis of CD in Poland, although shorter than in the UK, was long with an average of 7.3 years from first CD symptoms. Faster CD diagnosis after the onset of symptoms in Polish respondents may be related to a higher percentage of children in the Polish sample. Introduction of a gluten-free diet improves coeliac patients’ quality of life. These results suggest that doctors should be made more aware of CD and its symptoms across all age groups.

scholarly journals Health Related Quality of Life Assessment questionnaire for children aged 5 to 11 years with HIV/AIDS: cross-cultural adaptation for the Portuguese language

2011 ◽  
Vol 27 (7) ◽  
pp. 1445-1449 ◽  
Author(s):  
Luciana Scarlazzari Costa ◽  
Maria do Rosário Dias de Oliveira Latorre ◽  
Norman Hearst ◽  
Heloisa Helena de Souza Marques
Keyword(s):  
Quality Of Life ◽  
Cultural Adaptation ◽  
Cross Cultural ◽  
Life Assessment ◽  
Quality Of Life Assessment ◽  
Observer Reliability ◽  
Related Quality ◽  
Health Related ◽  
Assessment Questionnaire

The objective of this study is to describe preliminary results from the cross-cultural adaptation of the Quality of Life Assessment Questionnaire, used to measure health related quality of life (HRQL) in Brazilian children aged between 5 and 11 with HIV/AIDS. The cross-cultural model evaluated the Concept, Item, Semantic and Measurement Equivalences (internal consistency and intra-observer reliability). Evaluation of the conceptual, item, semantic equivalences showed that the Portuguese version is pertinent for the Brazilian context. Four of seven domains showed internal consistency above 0.70 (α: 0.76-0.90) and five of seven revealed intra-observer reliability (ricc: 0.41-0.70). This first Portuguese version of the HRQL questionnaire can be understood as a valuable tool for assessing children's HRQL, but further studies with large samples and more robust analyses are recommended before use in the Brazilian context.

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

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