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New Advances in Health-Related Quality of Life

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601).

Deadline for manuscript submissions: 30 November 2024 | Viewed by 8387

Special Issue Editor


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Guest Editor
Department of Clinical Nursing, Faculty of Health Sciences, Wroclaw Medical University, 51-618 Wroclaw, Poland
Interests: cardiology rhythm disorders; atrial fibrillation; quality of life of chronic patients; changes associated with old age; frailty syndrome; cognitive impairment

Special Issue Information

Dear Colleagues,

Disease management should not be limited to improving health conditions, but it should also explore patient well-being and quality of life related to health care (HRQoL). HRQoL goes beyond direct measures of population health, life expectancy, and causes of death, and instead focuses on the impact health status has on quality of life.

As clinical indicators are no longer sufficient for the evaluation of treatment effectiveness, HRQoL assessment has been introduced into medical practice. The use of HRQoL assessments indicates the disease and treatment-related limitations that patients experience in their daily lives, which therefore may be helpful in choosing an appropriate treatment and taking measures aimed at lifestyle modifications.

Potential topics for this Special Issue include all issues related to the HRQoL in the broadest sense, including chronic patients.

Dr. Katarzyna Lomper
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • quality of life
  • health-related quality of life
  • chronic condition
  • functioning in daily life
  • health-related problems

Published Papers (5 papers)

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Research

17 pages, 916 KiB  
Article
Linguistic, Content and Face Validity of the Swedish Version of a Quality-of-Life Assessment for Children, Teenagers and Adults with Spina Bifida
by Michaela Dellenmark-Blom, Marie Andersson, Konrad M. Szymanski, Charlotta Levén Andréasson, Magdalena Vu Minh Arnell, Sofia Sjöström and Kate Abrahamsson
Int. J. Environ. Res. Public Health 2024, 21(5), 624; https://doi.org/10.3390/ijerph21050624 - 15 May 2024
Viewed by 596
Abstract
Spina bifida includes a spectrum of different neural tube defects. Myelomeningocele is the most serious type and is associated with a risk of paralysis and sensory dysfunction below the affected level, bladder/bowel dysfunction, brain dysmorphology, and impaired health-related quality of life (HRQoL). The [...] Read more.
Spina bifida includes a spectrum of different neural tube defects. Myelomeningocele is the most serious type and is associated with a risk of paralysis and sensory dysfunction below the affected level, bladder/bowel dysfunction, brain dysmorphology, and impaired health-related quality of life (HRQoL). The aim of this study was to describe the establishment of linguistic, content and face validity of the Swedish version of a Quality-of-Life Assessment for children (QUALAS-C, n = 10 items), teenagers (QUALAS-T, n = 10 items) and adults with spina bifida (QUALAS-A, n = 15 items) based on the original US English versions. The process included close collaboration with the original instrument developer and complied with international standards on patient-reported outcome measurements. The procedure includes forward translation, expert and patient/parent review and reconciliation, back translation, back translation review and cognitive debriefing interviews with 16 people with spina bifida aged 8 to 33, providing them with the possibility of evaluating the clarity, adequacy, and comprehensiveness of QUALAS-C, QUALAS-T and QUALAS-A, respectively. The interviews lasted a median of 15 min (range 8–16) for QUALAS-C, 10 min (range 9–15) for QUALAS-T and 24 min (range 9–38) for QUALAS-A. Four main issues/topics needed attention and discussion after both the forward and back translation. Following the back translation review, all issues were resolved. The patient feedback revealed recognition of the HRQoL issues included in QUALAS, and also difficulties in understanding some questions. After the patients’ evaluation, four items were reworded for clarity. No study participant reported a wish to add to or remove questions from QUALAS. Hence, the Swedish versions of QUALAS became conceptually equivalent to the original US English versions and achieved linguistic, content and face validity. While empowering the voices of people with spina bifida, these results also enable their HRQoL to be properly assessed in research and clinical care in Sweden and in international studies. Full article
(This article belongs to the Special Issue New Advances in Health-Related Quality of Life)
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9 pages, 305 KiB  
Article
Anxiety and Depressive Symptoms, Frailty and Quality of Life in Atrial Fibrillation
by Katarzyna Lomper, Catherine Ross and Izabella Uchmanowicz
Int. J. Environ. Res. Public Health 2023, 20(2), 1066; https://doi.org/10.3390/ijerph20021066 - 6 Jan 2023
Cited by 4 | Viewed by 1634
Abstract
Introduction: Symptoms of atrial fibrillation (AF) can significantly affect functioning in daily life and reduce patients’ quality of life (QoL). The severity and type of AF symptoms affects not only patient’s QoL, but can be a cause of the development of emotional and [...] Read more.
Introduction: Symptoms of atrial fibrillation (AF) can significantly affect functioning in daily life and reduce patients’ quality of life (QoL). The severity and type of AF symptoms affects not only patient’s QoL, but can be a cause of the development of emotional and psychological disorders. In addition, frailty syndrome (FS) plays important role from the point of view of developing disability and dependence on others, as well as reducing QoL. Aim: To assess the symptoms of anxiety and depression, to evaluate the co-occurrence of frailty syndrome and the impact of these factors on the quality of life of patients with AF. Methods: The study used a Polish adaptation of the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia part III (ASTA part III), the Tilburg Frailty Indicator (TFI) and the Hospital Anxiety Depression Scale (HADS). Results: Analysis showed that anxiety symptoms and depressive symptoms correlate significantly (p < 0.05) and positively with the physical (r = 0.24; p < 0.001, r = 0.29, p = 0.002, respectively), psychological (r = 0.34, p < 0.001, r = 0.49 p < 0.001, respectively) and total quality of life (r = 0.31, p = 0.001, r = 0.414; p < 0.001, respectively) ASTA III domains. A significant (p < 0.05) positive correlation was observed between the TFI total score and the physical (r = 0.34, p < 0.001), psychological (r = 0.36, p < 0.001) and overall quality of life (r = 0.38, p < 0.001) in ASTA III domains. Conclusions: Both FS and depressive and anxiety symptoms significantly affect QoL. Understanding the relationship between anxiety and depressive symptoms, FS and QoL may allow for a more targeted approach to the treatment and care of patients with AF. Full article
(This article belongs to the Special Issue New Advances in Health-Related Quality of Life)
9 pages, 334 KiB  
Article
Quality of Life in Children with Prader–Willi Syndrome and the Impact of the Disease on the Functioning of Families
by Anna Rozensztrauch and Robert Śmigiel
Int. J. Environ. Res. Public Health 2022, 19(23), 16330; https://doi.org/10.3390/ijerph192316330 - 6 Dec 2022
Cited by 3 | Viewed by 1774
Abstract
Objective: Prader–Willi (PWS; OMIM#176270) syndrome is a clinically distinct genetic disorder, caused by an abnormality in the 15q11-q13 region, referred to as the critical region. One of the most popular concepts existing in modern sciences, not only within psychology, but also in the [...] Read more.
Objective: Prader–Willi (PWS; OMIM#176270) syndrome is a clinically distinct genetic disorder, caused by an abnormality in the 15q11-q13 region, referred to as the critical region. One of the most popular concepts existing in modern sciences, not only within psychology, but also in the aspect of all sciences that are related to human life and its course, is the quality of life (QoL). Though it is known that health-related quality of life in children with PWS can be reduced, less is understood about the impact on the family. We aimed to identify factors related to the quality of life of children with PWS and the impact of the disease on family functioning. Methods: A cross-sectional questionnaire survey. The subjects were 46 parents of children with PWS. The Computer Assisted Self-Interviewing (CASI) method was used; the Paediatric Quality of Life Inventory and the PedsQL Family Impact Module. Results: The PedsQL mean score was 49.0; (min–max: 5.6–90.8; SD = 16.8), with the highest scores in the Emotional Functioning (EF) (EF; 55.9; min–max: 5.0–100.0; SD = 22.0), and the lowest in the Social Functioning (SF) (SF; 42.7; min–max: 5.0–85.0; SD = 18.7) 56.4 (SD ± 14.7). The child’s age does not affect the quality of life, there were no statistically significant (p > 0.05). families have difficulties in performing daily activities (total score 27.6; SD 16.7), support family functioning (total score 28.9; SD 18.8) and effects physical domain (total score 27.7; SD 15.7). Conclusion: Research on the QoL of patients with PWS and their families is very important in order to assess the QoL, but also to provide the perspective of an active change in the perspective of a better treatment process, rehabilitation and communication in society. Full article
(This article belongs to the Special Issue New Advances in Health-Related Quality of Life)
16 pages, 391 KiB  
Article
The Effect of Frailty Syndrome on the Quality of Life of Individuals with Parkinson’s Disease: A Pilot Observational and Multicenter Study on the Polish Population
by Aleksandra Pytel, Jan Aleksander Beszlej, Monika Biercewicz, Anna Roszmann, Dorota Krówczyńska and Aleksandra Kołtuniuk
Int. J. Environ. Res. Public Health 2022, 19(22), 15226; https://doi.org/10.3390/ijerph192215226 - 18 Nov 2022
Cited by 1 | Viewed by 1172
Abstract
Parkinson’s disease (PD) is a neurodegenerative disorder involving decreased dopamine release and atrophy of dopaminergic neurons of the substantia nigra. Frailty syndrome (FS) is common in older adults, which, in combination with PD symptoms, can substantially affect the quality of life (QOL). This [...] Read more.
Parkinson’s disease (PD) is a neurodegenerative disorder involving decreased dopamine release and atrophy of dopaminergic neurons of the substantia nigra. Frailty syndrome (FS) is common in older adults, which, in combination with PD symptoms, can substantially affect the quality of life (QOL). This study aimed to assess the prevalence of FS among PD patients and to identify variables affecting their QOL with particular attention to FS. The study included 296 patients (n = 173 women) with a mean age of 70.3 ± 5.7 years suffering from PD for an average of 8.2 ± 5.6 years. Patients were classified as at least stage II according to the Hoehn and Yahr scale. The following standardized questionnaires were used in the study: Schwab and England Activities of Daily Living (SE-ADL), Parkinson’s Disease Questionnaire (PDQ-39), Beck Depression Inventory (BDI), Unified Parkinson’s Disease Rating Scale (UPDRS), and Tilburg Frailty Indicator (TFI). FS was found in 96% (n = 283) of the PD patients studied. No depression occurred in 30% (n = 89) of subjects, moderate depression in 48% (n = 141) of subjects, and severe depression in 22% (n = 66) of subjects. The mean score of the PDQ-39 questionnaire in PD subjects with FS was 41.6 pts (min–max: 5.2–81.5 pts; SD = 17.4 pts), which was statistically significantly higher than in subjects without FS (p < 0.05). FS has been shown to be present in most of the subjects with PD. FS occurs more frequently with a longer PD period, which is associated with reduced physical capacity and QOL. Physical activity improves QOL and reduces disease progression. FS, similar to PD, is a common cause of disability in older adults and their dependency. Predictors such as depression, advanced stage of the disease, higher education, and low professional and economic status significantly affect the QOL level of PD patients. However, the results obtained among the Polish population of PD patients do not confirm the impact of FS on the QOL, so there is a need to conduct further research on this subject. Full article
(This article belongs to the Special Issue New Advances in Health-Related Quality of Life)
15 pages, 386 KiB  
Article
The Quality of Life and Medication Adherence in Patients with Multiple Sclerosis—Cross-Sectional Study
by Aleksandra Kołtuniuk, Aleksandra Pytel, Dorota Krówczyńska and Justyna Chojdak-Łukasiewicz
Int. J. Environ. Res. Public Health 2022, 19(21), 14549; https://doi.org/10.3390/ijerph192114549 - 5 Nov 2022
Cited by 4 | Viewed by 2548
Abstract
Multiple sclerosis (MS) is a chronic, degenerative autoimmune inflammatory disease of the central nervous system. MS is characterized by a wide range of symptoms and unpredictable prognosis, which can severely affect patient quality of life (QOL). The treatment strategy includes acute relapse treatment, [...] Read more.
Multiple sclerosis (MS) is a chronic, degenerative autoimmune inflammatory disease of the central nervous system. MS is characterized by a wide range of symptoms and unpredictable prognosis, which can severely affect patient quality of life (QOL). The treatment strategy includes acute relapse treatment, disease-modifying treatment (DMT), and symptomatic therapy. Adherence to long-term DMTs is essential in order to maximize the therapeutic effects for MS and is crucial to health-related quality of life (HRQOL). This study aimed to evaluate the relationship between QOL and adherence to DMTs in MS patients. A group of 344 patients (73% females) aged 39.1 years with relapsing-reemitting MS were included. The Multiple Sclerosis International Quality of Life (MusiQOL) and the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ) were used. An injection of interferon (IFN)-β1b was used in 107 patients, IFN-β1a in 94 patients, and glatiramer acetate in 34 patients. The oral treatment includes teriflunomide in 14 patients, dimethyl fumarate in 86 patients, and fingolimod in nine patients. No statistically significant differences (p > 0.05) were observed in adherent (ADH) vs. non-adherent patients (non-ADH) in MusiQOL. The total adherence rate was 72% (MS-TAQ). An analysis of the univariate logistic regression model showed an effect of only the activities of daily living (ADL) and relationship with the healthcare system (RHCS) domains on the level of adherence to treatment recommendations. The other variables studied do not affect the level of adherence. Higher QOL levels in the ADL and RHCS domains affect medication adherence in MS patients. Our findings could help manage MS patients, promoting interventions on ADLs and good relationships with healthcare providers to improve their adherence to therapy and result in better QOL. Full article
(This article belongs to the Special Issue New Advances in Health-Related Quality of Life)
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