scholarly journals Development of a patient-centred conceptual framework of health-related quality of life in neuromyelitis optica: a qualitative study

2015 ◽  
Vol 20 (1) ◽  
pp. 47-58 ◽  
Author(s):  
Abigail M. Methley ◽  
Kerry Mutch ◽  
Perry Moore ◽  
Anu Jacob
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Conceptual Framework ◽  
Neuromyelitis Optica ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Elicitation of Health-related Quality-of-life Concepts Associated with Overactive Bladder: A Qualitative Study

10.36469/9816 ◽  
2016 ◽  
Vol 4 (2) ◽  
pp. 127-140 ◽  
Author(s):  
Natalia Hawken ◽  
Zalmai Hakimi ◽  
Samuel Aballéa ◽  
Jameel Nazir ◽  
Isaac A. O. Odeyemi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Overactive Bladder ◽  
Conceptual Framework ◽  
Health Related Quality ◽  
Mental Functioning ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background: Overactive bladder (OAB) is a symptom-defined disorder. A range of instruments are available for assessing OAB symptom bother, urinary urgency and the effects of symptoms on health-related quality of life (HRQoL), but few have been specifically designed and validated for this condition. HRQoL instruments should capture the concepts that are most relevant to patients. To our knowledge, there is no existing published conceptual framework for OAB. Objectives: We performed a qualitative study to explore the impact of symptoms of OAB on affected patients and to develop a conceptual framework for OAB. Methods: Patients diagnosed with OAB living in the United Kingdom were interviewed on the telephone by a trained psychologist using an interview discussion guide. Interview transcripts were analyzed thematically by two psychologists. Data collection and analysis was completed when data saturation, i.e. when little or no new information was obtained, was achieved. Results: A total of 30 patients were interviewed. Fifteen patients (50%) had urge incontinence (i.e. OAB-wet). Interview data showed that OAB affected role functioning, sleep quality, social functioning, and emotional/mental functioning. In addition, patients often adopted non-medical coping strategies to manage their symptoms (e.g. planning activities). Factors which affected more than 50% of patients were going for a short walk, waking up at night, travelling/holidays, socializing/going out, embarrassment/shame, need to plan activities, and restriction of places visited. More patients with OAB-wet reported impairment of social and emotional/mental functioning than patients with OAB-dry. A conceptual framework for adults with OAB depicting the relationships between OAB concepts (or outcomes) was developed. Conclusions: OAB has a profound effect on patient HRQoL and negatively affects a broad range of functions, including daily and work activities, leisure and social activities, psychological well-being, and sleep capacity. The conceptual framework emerging from this study supports the utilization of existing disease-specific HRQoL instruments, but identifies that work-related effects, which are relevant for OAB patients, are missing from currently available measures.

scholarly journals Impact of Pediatric COVID-19 on Family Health-Related Quality of Life: A Qualitative Study from Latvia

2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Family Relationships ◽  
Family Health ◽  
Support Network ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.

Evaluation of health-related quality of life, fatigue and depression in neuromyelitis optica

2010 ◽  
Vol 18 (6) ◽  
pp. 836-841 ◽  
Author(s):  
J.-B. Chanson ◽  
H. Zéphir ◽  
N. Collongues ◽  
O. Outteryck ◽  
F. Blanc ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neuromyelitis Optica ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking

2020 ◽  
Vol 29 (5) ◽  
pp. 1169-1181
Author(s):  
Roxanne M. Parslow ◽  
Nina Anderson ◽  
Danielle Byrne ◽  
Kirstie L. Haywood ◽  
Alison Shaw ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Conceptual Framework ◽  
Outcome Measure ◽  
Chronic Fatigue ◽  
Health Related Quality ◽  
Fatigue Syndrome ◽  
Related Quality ◽  
Health Related ◽  
Ranking Exercise

Abstract Purpose Chronic fatigue syndrome (CFS)/myalgic encephalopathy (ME) is relatively common in children and is disabling at an important time in their development. This study aimed to develop a conceptual framework of paediatric CFS/ME using the patient-perspective to ensure that the content of a new outcome measure includes the outcomes most important to young people. Methods We developed a child-centred interactive card ranking exercise that included health-related quality of life (HRQoL) outcomes identified from a previous review of the literature as well as qualitative work. Adolescents and their parents selected and ranked the outcomes most important to them and discussed each outcome in further detail. Adolescents were purposively sampled from a single specialist paediatric CFS/ME service in England. Interviews were audio recorded and transcribed verbatim, and thematic framework analysis was used to develop the final conceptual framework. Results We interviewed 43 participants in which there are 21 adolescents, 12–17 years of age with mild–moderate CFS/ME and their parents (20 mothers and 2 fathers). ‘Symptoms’, ‘tiredness’, ‘payback and crashing’ and ‘activities and hobbies’ were ranked most important to improve by both children and parents. Children ranked ‘school’ higher than parents and parents ranked ‘mood’ higher than children. A youth- specific CFS/ME conceptual framework of HRQoL was produced that included 4 outcome domains and 11 subdomains: sleep, tiredness, problems concentrating, individual symptoms, fluctuation and payback, daily and general activities, participation in school, leisure and social life, mood, anxiety and self-esteem. Conclusions An interactive card ranking exercise worked well for adolescents aged 12–17 to elicit the most important outcomes to them and explore each domain in further detail. We developed a final conceptual framework of HRQoL that forms the basis of a new paediatric patient-reported outcome measure (PROM) in CFS/ME.

scholarly journals Toward Patient-Centered Innovation

2020 ◽  
Vol 15 (10) ◽  
pp. 1522-1530
Author(s):  
Jennifer E. Flythe ◽  
Tandrea S. Hilliard ◽  
Kourtney Ikeler ◽  
San Keller ◽  
Debbie S. Gipson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Conceptual Framework ◽  
Drug Administration ◽  
Food And Drug Administration ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Individuals with dialysis-dependent kidney failure experience considerable disease- and treatment-related decline in functional status and overall well-being. Despite these experiences, there have been few substantive technological advances in KRT in decades. As such, new federal initiatives seek to accelerate innovation. Historically, integration of patient perspectives into KRT product development has been limited. However, the US Food and Drug Administration recognizes the importance of incorporating patient perspectives into the total product life cycle (i.e., from product conception to postmarket surveillance) and encourages the consideration of patient-reported outcomes in regulatory-focused clinical trials when appropriate. Recognizing the significance of identifying patient-reported outcome measures (PROMs) that capture contemporary patient priorities, the Kidney Health Initiative, a public–private partnership between the American Society of Nephrology and US Food and Drug Administration, convened a workgroup to (1) develop a conceptual framework for a health-related quality of life PROM; (2) identify and map existing PROMs to the conceptual framework, prioritizing them on the basis of their supporting evidence for use in the regulatory environment; and (3) describe next steps for identifying PROMs for use in regulatory clinical trials of transformative KRT devices. This paper summarizes the proposed health-related quality-of-life PROM conceptual framework, maps and prioritizes PROMs, and identifies gaps and future needs to advance the development of rigorous, meaningful PROMS for use in clinical trials of transformative KRT devices.

Development of a conceptual framework of health-related quality of life in pressure ulcers: A patient-focused approach

2010 ◽  
Vol 47 (12) ◽  
pp. 1525-1534 ◽  
Author(s):  
Claudia Gorecki ◽  
Donna L. Lamping ◽  
Julia M. Brown ◽  
Anna Madill ◽  
Jill Firth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Conceptual Framework ◽  
Pressure Ulcers ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Health-related Quality of Life: Expanding a Conceptual Framework to Include Older Adults Who Receive Long-term Services and Supports

2012 ◽  
Vol 53 (2) ◽  
pp. 205-210 ◽  
Author(s):  
C. Zubritsky ◽  
K. M. Abbott ◽  
K. B. Hirschman ◽  
K. H. Bowles ◽  
J. B. Foust ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Conceptual Framework ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Services And Supports
Sign in / Sign up

Export Citation Format

Share Document