Quality of Life in Family Caregivers of Patients with Schizophrenia: A Narrative Review

Author(s):  
Jes Sebastian Völker ◽  
Ioana Valentina Micluția

: Care for schizophrenia patients over the past few decades has shifted from inpatient treatment in mental institutions towards outpatient treatment options. While this has the potential to allow patients a more regular life with the ability to work and socialize, it has increased the burden on family caregivers. This state-of-the-art narrative review summarizes the most important factors, besides the clinical symptoms of schizophrenia, that impact the quality of life of caregivers negatively. These factors include the impact of the disease on household income and socioeconomic status, anxiety, stigma, negative changes in family dynamics as well as an overall reduction of social and family contacts.

2019 ◽  
Vol 15 (4) ◽  
pp. 238-244
Author(s):  
Cristina Zarbo ◽  
Agostino Brugnera ◽  
Rita Secomandi ◽  
Ilario Candeloro ◽  
Chiara Malandrino ◽  
...  

Objective: Infertility has a severe impact on quality of life and mental health. This condition could be exacerbated by the existence of comorbid medical disease, like endometriosis. The aim of this critical narrative review is the examination of the state of the art about the quality of life and mental health in infertile women with endometriosis. Methods: We performed a rigorous and systematic search for studies on multiple electronic databases. A total of 6 papers were included in the review and were subjected to interpretative and critical narrative synthesis. Results and Discussion: Major findings are resumed in the following points: (a) infertile women with endometriosis when compared to infertile ones without endometriosis show higher depression, stress perception, and anxiety, and lower general quality of life; (b) quality of life specifically related to infertility is similar among women with and without endometriosis and seems to be related to personality and beliefs factors; (c) giving birth to a child is related to better mental quality of life; (d) during assisted reproductive treatment (ART) stimulation, infertile women with endometriosis have a decrease of dysmenorrhea and dyspareunia; (e) satisfaction of ART is related to the number of attempts, treatment accomplishment and pregnancy test outcomes. Clinical implications of these findings and suggestions for future researches were discussed. Conclusion: Concluding, it is crucial to assess the psychological factors related to endometriosis and infertility to reduce the impact of these diseases on quality of life and mental health, provide adequate support to these patients, improve their satisfaction and increase the change to get pregnant.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.


Cancers ◽  
2019 ◽  
Vol 11 (10) ◽  
pp. 1500 ◽  
Author(s):  
Rebecca V. Steenaard ◽  
Laura A. Michon ◽  
Harm R. Haak

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.


2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Marcelo Lopes ◽  
Angelo Karaboyas ◽  
Kazuhiko Tsuruya ◽  
Issa Al Salmi ◽  
Nidhi Sukul ◽  
...  

Abstract Background and Aims Chronic kidney disease-associated pruritus (CKD-aP) has been linked with comorbid conditions, and poorer mental and physical health-related quality-of-life (HR-QOL) in hemodialysis (HD) patients. The Skindex-10 questionnaire and a single itch-related question from the KDQOL-36 have been used to evaluate the impact of pruritus in HD patients. In this analysis, we investigated the performance of the single question and the Skindex-10 as predictors of HR-QOL in HD patients. Method We analyzed data from 4940 HD patients from 17 countries enrolled during year 2 of phase 5 of the Dialysis Outcomes and Practice Patterns Study (DOPPS, 2013): Belgium, Canada, Germany, the Gulf Cooperation Council (GCC) (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, United Arab Emirates), Italy, Japan, Russia, Spain, Sweden, Turkey, the UK, and the US. The Skindex-10 scores were calculated as per Mathur et al. (2010): responses to each of the 10 questions (0-6 scale), pertaining to how often patients were bothered by itchy skin in the past week, were summed to create a total summary score (range 0-60, with 0 indicating not at all bothered) and 3 subdomain scores [i.e., itching (disease) and its impact on mood/emotional and social functioning]. The itch-related single question from the KDQOL-36 asked: “During the past 4 weeks, to what extent were you bothered by itchy skin?” with response options including “not at all, somewhat, moderately, very much, extremely”. Itch-related measures were collected concurrently with HR-QOL measures: Physical (PCS) and Mental (MCS) Component Summary scores, derived from the SF-12. We calculated the Spearman correlation coefficient between the Skindex-10 (total score and for each of its 3 domains) and the single question. We used separate linear regression models to evaluate the predictive power of 1) the Skindex-10 score, 2) the single itch question, and 3) both, on PCS and MCS outcomes, based on R-squared values. Results Skindex-10 scores varied across countries; the proportion of patients with a very high Skindex-10 score (≥50) ranged from 12% in the GCC to only 2% in Italy, Russia and Sweden. Across all countries, 55% had a Skindex-10 score=0. For the single pruritus question, 37% answered that they were not at all bothered while 16% were very much or extremely bothered by itchy skin. The correlation between the single question and Skindex-10 was 0.71 overall, 0.72 for the disease domain, 0.62 for the social domain, and 0.70 for the emotional domain. Patient characteristics were similar across categories of both pruritus measures. Regression analyses showed that every 10 points higher in the Skindex-10 score was associated with 1.2 point lower PCS (95% CI: -1.4, -0.9) and 1.5 point lower MCS (95% CI: -1.7, -1.3) scores. Similarly, the single question showed increasingly poorer PCS and MCS scores with a greater degree of being bothered by pruritus: compared with patients not at all bothered by itchy skin, patients who were moderately bothered had 4.8 point lower PCS (-5.7, -3.9) and 4.3 point lower MCS (-5.3, -3.3) scores. The R-squared for PCS was 0.065 when using the single question and only 0.033 when using the Skindex-10 as the predictor. R-squared was also higher for MCS when using the single question (0.056) vs. Skindex-10 (0.052). When including both pruritus measures, the predictive power for PCS did not improve compared to the single question (R2=0.065), while increasing only slightly (R2=0.063) for MCS. Conclusion The single KDQOL-36 question about the extent bothered by itchy skin over the past 4 weeks was highly correlated with the Skindex-10 score and at least as predictive – if not more – of key HR-QOL measures as the Skindex-10. In daily clinical practice, utilizing 1 simple question about the extent patients are bothered by itchy skin can be a feasible and efficient way for routine assessment of pruritus to better identify HD patients with not only CKD-aP but also poorer HR-QoL.


2021 ◽  
Vol 2021 ◽  
pp. 1-10
Author(s):  
Montse Romero-Mas ◽  
Anna Ramon-Aribau ◽  
Dyego Leandro Bezerra de Souza ◽  
Andrew M. Cox ◽  
Beni Gómez-Zúñiga

Caring for a person with dementia burdens family caregivers, and there is a close negative relationship between this burden and their quality of life (QoL). Research suggests that caregivers’ main needs are information and training about the disease and support from others experiencing the same situation, and Internet interventions hold considerable promise for meeting these needs. Virtual communities of practice (VCoPs) are Internet frameworks to share knowledge where members collaborate and achieve a sense of trust in the community. This paper seeks to evaluate the impact of participating in a VCoP (developed through an App) on the QoL of caregivers to people with Alzheimer’s. Results show QoL before and after the intervention changed significantly. The impact of VCoP on caregivers’ overall QoL is moderated by age and relation with the person with Alzheimer’s, specifically those over 65, and spouses. VCoPs allow interaction and knowledge sharing among caregivers which provide them mainly with information and support from peers helping them to meet their needs. Furthermore, caregivers’ QoL did not decrease when their relative deteriorated functionally, which could be due to the participation in VCoP. Although we found significant pre- and post differences in caregivers’ health literacy, we must report the ambiguous result that this variable only impacts on QoL’s physical domain. Participants also reported that they had a positive experience because the App was perceived to be a useful tool, because they could manage their own participation and they met peers and felt less lonely. Results suggest that participation in a VCoP impacts positively on caregivers’ QoL.


2020 ◽  
Vol 96 (2) ◽  
pp. 3-6
Author(s):  
M.C. Maccarone ◽  
G. Magro ◽  
U. Solimene ◽  
S. Masiero

Chronic Musculoskeletal Disorders (MSDs) are age-related conditions, linked to functional impairment and decreased quality of life (QoL). As a result of the increased life expectancy in Europe, great attention has been focused on investigating the impact of these diseases on QoL. Thermal environment is a suitable place for providing interventions (mud therapy, bath, exercise, etc.) for chronic MSD patients. Our narrative review aims to assess if Spa therapy may improve QoL in patients with chronic MSDs. We searched randomized clinical trials and clinical trials screening PubMed and Google Scholar databases from 2016 up to March 2020. We included 14 trials testing Spa therapy interventions concerning osteoarthritis, rheumatoid arthritis, chronic shoulder pain and fibromyalgia. In conclusion, even though limitations must be considered, evidence shows that Spa therapy, especially in combination with rehabilitation approach, can significantly improve QoL of patients with chronic MSDs.


2005 ◽  
Vol 15 (S1) ◽  
pp. 174-178 ◽  
Author(s):  
Kathleen Mussatto ◽  
James Tweddell

The past two decades have witnessed a major shift towards repair of most congenital cardiac malformations during the neonatal or infant periods of life.1 Early anatomic correction or palliation, dramatic improvements in survival, and reduced morbidity due to improvements in perioperative and long-term medical management, have resulted in new populations of children that have reaped the benefits of the best care currently available for treatment of congenital cardiac disease. The impact of the congenital cardiac malformations, however, extends far beyond the walls of the hospital or clinic where we diagnose, treat, and follow our patients. The breakthrough of achieving predictable results with repair or palliation of most lesions during the neonatal and infant periods mandates us to look beyond survival, and to examine the lives our patients lead when they are outside of our care. Our purpose in this review is to discuss the measures of psychosocial outcome that are appropriate for exploration in those neonates and infants who survive cardiac surgery, to explore what is known about the psychosocial outcomes and quality of life for these patients, and what needs exist for future research.


PLoS ONE ◽  
2012 ◽  
Vol 7 (8) ◽  
pp. e44268 ◽  
Author(s):  
Robert P. Finger ◽  
David G. Kupitz ◽  
Eva Fenwick ◽  
Bharath Balasubramaniam ◽  
Ramanathan V. Ramani ◽  
...  

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    


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