scholarly journals Measuring What Matters—A Holistic Approach to Measuring Well-Being in Endometriosis

2021 ◽  
Vol 2 ◽  
Author(s):  
Lori McPherson ◽  
Siladitya Bhattacharya

Endometriosis is a common condition which affects women in a number of ways and impairs their ability to live a full and meaningful life. Evaluative research has traditionally taken its cue from a medical approach which has forced women to choose one area of functioning as their primary concern, and tended to use a narrow definition of treatment success which ignores general well-being. While recent trials have included quality of life (QOL) measures as outcomes, these have not been able to capture the totality of the impact of the disease and its treatment on a woman's capability to do what she might want to do and be who she might want to be. A capability approach might overcome this barrier, but the available tools will need to be refined and validated in women with endometriosis before this can be integrated within everyday clinical and research practice.

2020 ◽  
Author(s):  
Grażyna Iwanowicz-Palus ◽  
Mariola Małgorzata Mróz ◽  
Agnieszka Bień

Abstract Background: The task of modern medicine is not just to heal, but also to improve the patient’s well-being and achieve non-medical goals in the therapy process that enable effective physical, mental and social functioning of the patient. Social support in difficult situations mobilizes an individual's strength and resources to cope with problems. Research on social support and women’s condition after pregnancy loss reflects a holistic approach to the patient and is important from the perspective of increasing the level of hospital care. The aim of our study was to assess the impact of social support on the psychophysical condition, health, and satisfaction with quality of life among women after miscarriage and ectopic pregnancy.Methods: The study was carried out among 500 patients after misscariage and 110 with ectopic pregnancy, hospitalized in hospitals in Lublin (Poland). The study was conducted with the use of a diagnostic survey with the application of the Berlin Social Support Scales (BSSS) and original survey questionnaire.Results: Respondents after miscarriage and those after termination of ectopic pregnancy assigned highest scores to the degree of perceived available instrumental support (respectively, miscarriage: M = 3.79, EP: M = 3.77), emotional support (M = 3.68, M = 3.65), and actually received support (M = 3.61, M = 3.57) (p < 0.05). Women after pregnancy loss assigned the highest score to the support obtained from their partner (respectively, miscarriage: M = 9.26, EP: M = 9.23), family (M = 9.09, M = 9.18), midwife (M = 8.70, M = 8.58), and friends (M = 8.49, M = 8.61) (p < 0.05). Social support was significantly correlated with the condition of patients hospitalized as a result of pregnancy loss (p < 0.05).Conclusions: Women hospitalized due to miscarriage and ectopic pregnancy assigned high scores to the level of perceived available instrumental, emotional, and actually received social support. There is a positive relationship between social support and subjective opinion about psychophysical condition, health and satisfaction with quality of life among women after pregnancy loss.


BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  

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.


Author(s):  
Germina-Alina Cosma ◽  
Alina Chiracu ◽  
Amalia Raluca Stepan ◽  
Marian Alexandru Cosma ◽  
Marian Costin Nanu ◽  
...  

The aim of this study was to analyze athletes’ quality of life during the COVID-19 pandemic. The study involved 249 athletes between 15 and 35 of age, M = 21.22, SD = 5.12. The sample was composed of eight Olympic Games medalists, three European medalists, 67 international medalists, and 63 national medalists. The instruments used were: (1) COVID-19 Anxiety Scale, (2) Athlete Quality of Life Scale, (3) Impact of Pandemic on Athletes Questionnaire, and (4) International Personality Item Pool (IPIP Anxiety, Depression, and Vulnerability Scales). The results indicate significant differences in COVID-19 anxiety depending on the sport practiced, F (9239) = 3.81, p < 0.01, showing that there were significant differences between sports. The negative impact of the COVID-19 pandemic mediates the relationship between trait anxiety and the athletes’ quality of life. The percentage of mediation was 33.9%, and the indirect effect was −0.11, CI 95% (−0.18, −0.03), Z = −2.82, p < 0.01. Trait anxiety has an increasing effect on the intensity of the negative impact of the COVID-19 pandemic, 0.23, CI 95% (.10, 0.35), Z = 3.56, p < 0.01, and the negative impact of the COVID-19 pandemic has a decreasing effect on quality of life, −0.47, CI 95% (−0.67, −0.27), Z = −4.62, p < 0.01. Gender and age did not moderate the relationship between the negative impact of COVID-19 and athletes’ quality of life. The results of the study highlighted the impact that social isolation and quarantine have on athletes’ affective well-being.


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.


2021 ◽  
Vol 28 (1) ◽  
pp. 42-50
Author(s):  
Nicole M. Glenn ◽  
Lisa Allen Scott ◽  
Teree Hokanson ◽  
Karla Gustafson ◽  
Melissa A. Stoops ◽  
...  

Financial well-being describes when people feel able to meet their financial obligations, feel financially secure and are able to make choices that benefit their quality of life. Financial strain occurs when people are unable to pay their bills, feel stressed about money and experience negative impacts on their quality of life and health. In the face of the global economic repercussions of the COVID-19 pandemic, community-led approaches are required to address the setting-specific needs of residents and reduce the adverse impacts of widespread financial strain. To encourage evidence-informed best practices, a provincial health authority and community-engaged research centre collaborated to conduct a rapid review. We augmented the rapid review with an environmental scan and interviews. Our data focused on Western Canada and was collected prior to the pandemic (May–September 2019). We identified eight categories of community-led strategies to promote financial well-being: systems navigation and access; financial literacy and skills; emergency financial assistance; asset building; events and attractions; employment and educational support; transportation; and housing. We noted significant gaps in the evidence, including methodological limitations of the included studies (e.g. generalisability, small sample size), a lack of reporting on the mechanisms leading to the outcomes and evaluation of long-term impacts, sparse practice-based data on evaluation methods and outcomes, and limited intervention details in the published literature. Critically, few of the included interventions specifically targeted financial strain and/or well-being. We discuss the implications of these gaps in addition to possibilities and priorities for future research and practice. We also consider the results in relation to the COVID-19 pandemic and its economic consequences.


2021 ◽  
pp. 097226292098454
Author(s):  
Vipul Patel ◽  
Richa Pandit

Today, all phases of consumers' buying process from pre-information search, evaluation of alternatives, order placing and post-purchase service are conducted in shopping apps installed in smartphones. A shopping app is omnipresent and is a powerful retail channel for retailers all over the world. However, the primary concern for many customers is that online shopping is not secure. This insecurity is more if customers have to purchase from an unfamiliar shopping app. Customers generally hesitate to purchase using unfamiliar shopping apps, unless they feel that the app is trustworthy. Based on the survey of 264 respondents, this study attempts to measure the impact of the quality of unfamiliar shopping apps on initial trust formation and subsequently, purchase intention. An attempt was also made to study the moderated mediation impact of risk attitude on the relationship between shopping app quality and initial trust formation. The findings of this paper may be of practical use for the online retailers by providing a better understanding of the adoption of unfamiliar shopping apps among prospective customers. It will also provide strategic inputs to online retailers to craft suitable strategies for the adoption of unfamiliar shopping apps.


2021 ◽  
pp. 223386592110117
Author(s):  
Robert Davidson ◽  
Alexander Pacek ◽  
Benjamin Radcliff

While a growing literature within the study of subjective well-being demonstrates the impact of socio-political factors on subjective well-being, scholars have conspicuously failed to consider the role of the size and scope of government as determinants of well-being. Where such studies exist, the focus is largely on the advanced industrial democracies of the Organization for Economic Co-Operation and Development. In this study, we examine the size of the public sector as a determinant of cross-national variation in life satisfaction across a worldwide sample. Our findings strongly suggest that as the public sector grows, subjective well-being increases as well, conditional on the extent of quality of government. Using cross-sectional data on 84 countries, we show this relationship has an independent and separable impact from other economic and political factors.


2010 ◽  
Vol 16 (3) ◽  
pp. 200 ◽  
Author(s):  
Monika Merkes

Mindfulness-based stress reduction (MBSR) is a structured group program that uses mindfulness meditation to improve well-being and alleviate suffering. This article reviews the impact of MBSR for people with chronic diseases. The review includes original research that was published in English and peer-reviewed and reported outcomes for adults with chronic diseases who had participated in an MBSR program. Fifteen studies were identified. Outcomes related to mental and physical health, well-being, and quality of life. The studies included different research designs, and used self-report and physiological outcome measures. Participants’ clinical diagnoses included fibromyalgia, chronic pain, rheumatoid arthritis, type 2 diabetes, chronic fatigue syndrome, multiple chemical sensitivity, and cardiovascular diagnoses. All 15 studies found that participation in an MBSR program resulted in improvements. No negative change was reported between baseline and follow up. Outcomes in regard to specific variables were difficult to compare and equivocal. Overall, positive change predominated. Chronic diseases are associated with a range of unwelcome psychological and physical consequences. Participation in an MBSR program is likely to result in coping better with symptoms, improved overall well-being and quality of life, and enhanced health outcomes. As an adjunct to standard care, MBSR has potential for much wider application in Australian primary care settings.


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