Understanding Quality Of Life Research Articles

Shaping future home: understanding quality of life and citizenship in smart cities

PurposeThis study aims to examine the effects of technology-, organisation- and environment-readiness, smart economic development, change valence, social cohesion and quality of life on citizenship in the context of smart cities.Design/methodology/approachThe study employed a customized questionnaire which was completed by 280 residents of China’s first-tier cities. This study tested the framework using the partial least squares structural equation modelling (PLS-SEM) technique.FindingsThe results indicated that smart economy development, social cohesion, change valence, technological readiness, organizational readiness and environmental readiness have a significant impact on the quality of life. Quality of life has a positive impact on citizenship.Originality/valueThis study adds new insights to smart city academic discussions. The study addresses a critical gap identified in existing literature which urges the need for a balance between user-centric, organization-centric and technology-centric approaches. It offers a fresh perspective on how the smart economy, social cohesion and readiness factors are interlinked. These elements together shape urban living experiences. For policymakers and urban planners, our findings provide clear guidance. They highlight the complex dynamics that must be considered to build more unified, inclusive and sustainable smart cities.

Measuring and understanding "quality of life" among emerging adults in a substance use program.

This work focuses on understanding quality of life and evaluating a brief quality of life measure in an outpatient emerging adult (17-25 years of age) substance use program. Mixed methods were used including: (a) psychometric evaluation of the adapted MyLifeTracker (MLT) based on assessments completed four times throughout treatment (n = 100) and (b) qualitative interviews with 12 emerging adults in the program. The study was codesigned, cofacilitated, and cointerpreted with emerging adults with lived experience. At intake, emerging adults reported quality of life scores of 3.7/10 on average and significantly improved (change M = 2.1 points, d = 0.86, p < .001) at the ∼12-week follow-up demonstrating program effects and sensitivity to change. Factor analysis suggested unidimensionality of the measure and internal consistency was high (ω = 0.81). MLT scores correlated in expected directions with other measures of quality of life, functioning, and mental health symptoms and demonstrated incremental validity in explaining variability in these measures over and above World Health Organization quality of life items. Emerging adults thought the five items (i.e., general well-being, day-to-day activities, relationships with friends, relationships with family, coping) generally captured the most important aspects of quality of life to them and had positive impressions regarding the use of this measure for measurement-based care. Other important aspects of quality of life included feeling a sense of meaning, purpose, motivation, and independence. Overall, the MLT demonstrated evidence of psychometric and content validity among emerging adults in substance use treatment. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Quality of Life among Colostomy Patients in Najran, Saudi Arabia

Abstract Background: Colostomy surgery significantly impacts the quality of life (QoL) of patients, encompassing physical, psychological, social, and spiritual well-being. This study aimed to assess QoL among colostomy patients in Najran, Saudi Arabia, using the City of Hope Quality of Life-Ostomy Questionnaire (COH-QOL-OQ) Arabic version. Methodology: A cross-sectional study was conducted with 73 colostomy patients at King Khaled Hospital. Demographic characteristics, colostomy-related factors, and QoL scores were analyzed using the descriptive statistics and analysis of variance. Results: Participants aged 18–30 years reported higher physical QoL scores than older age groups. Marital status before colostomy, educational level, and body mass index significantly influenced psychological, social, and spiritual QoL domains. Fecal incontinence as a reason for colostomy was associated with lower psychological well-being scores. Notably, participants with “I do not know” as the type of colostomy reported higher spiritual QoL scores. The findings emphasize the intricate relationship between demographic and colostomy-related factors and QoL domains. These insights underscore the need for comprehensive care strategies, acknowledging the multidimensional nature of patients’ well-being. Conclusion: This study advances our understanding of QoL among colostomy patients in Saudi Arabia, offering insights for health-care professionals to develop more holistic care approaches. The findings illuminate the significance of multidimensional factors in shaping patients’ overall well-being, thus contributing to enhanced patient-centered care and improved QoL outcomes.

Correlation Between Severity of Symptoms and Quality of Life in Patellofemoral Pain Syndromes: A Cross-Sectional Study.

Background Patellofemoral pain syndrome(PFPS) is one of the conditions frequently encountered by musculoskeletal physiotherapists. The intensity and severity of pain and symptoms seen in PFPS affect the quality of life (QOL). This concept has not yet been investigated with the use of reliable and valid scales. Hence, the objective of this study is to find out the correlation between the severity of symptoms and QOL in patients with PFPS. Methodology In this cross-sectional study, 63 patientswith PFPS, aged between 40 and 60 years, who visited Sir Sayajirao General Hospital, Vadodara, from December 2018 to June 2019, were included. The questionnaires included in the study comprised the Numerical Pain Rating Scale (NPRS), the Knee Osteoarthritis Outcome Survey-Patellofemoral Subscale (KOOS-PF), and the Short Form-36 (SF-36). Spearman's rank correlation coefficient was used to find the correlation. Results NPRS was found to have a fairly positive correlation with the functional scale KOOS-PF, with a P-value of 0.008. Among the eight components of SF-36, Physical Function and General Health scores exhibited a fairly positive correlation with NPRS, with p-values of 0.016 and <0.001, respectively. However, no correlation was observed between NPRS and the other components of SF-36. Conclusions This study concluded that patients with PFPS with different levels of pain exhibit different functional and QOL limitations. Furthermore, studies investigating the causes of the negative correlation should be conducted to have a better understanding of QOL in PFPS.

Abstract 12135: Quality of Life in Early-Stage Hypertrophic Cardiomyopathy: A Secondary Analysis of the VANISH Trial

Background: The VANISH trial (Valsartan for Attenuating Disease Evolution in Early Sarcomeric Hypertrophic Cardiomyopathy) showed valsartan improves LV remodeling in early-stage HCM, but its effects on quality of life (QOL) are unknown. A better understanding of QOL may impact patient wellness. Aims: Describe baseline QOL in early-stage HCM. Assess the impact of valsartan on QOL in early-stage HCM. Methods: We evaluated QOL using age-adjusted versions of the Pediatric Quality of Life Inventory in VANISH participants (ages 8-45): 166 with early-stage HCM, 34 with subclinical HCM (sarcomere variant present but normal LV wall thickness/no HCM diagnosis). Demographic, imaging, CPET, and biomarker correlates of baseline QOL were studied. The impact of valsartan on QOL was analyzed in the early-stage HCM cohort. Results: Participants with early-stage HCM reported good baseline QOL, better than an earlier published healthy validation cohort but diminished compared to subclinical participants (mean overall/physical/psychosocial scores 85/87/84 for early-stage, 90/92/89 subclinical, 82/84/81 earlier validation cohort). Race and ethnicity influenced QOL, with non-white and Hispanic participants reporting lower scores (Table 1). Valsartan improved physical QOL (p=0.03), with suggestion of differential effect by sex and pubertal status, but limited power to detect effect modification (Figure 1). Conclusion: Baseline QOL is lower in patients with early-stage HCM compared to subclinical participants despite NYHA I status. Non-white and Hispanic participants and those with lower baseline peak VO 2 may have lower quality of life. Valsartan treatment improved physical QOL.

Recruitment lessons learned from a cross-sectional study of quality of life experienced by people receiving treatments for hepatocellular carcinoma.

e24162 Background: People with advanced-stage hepatocellular carcinoma (HCC) are living longer given improved treatment effectiveness, yet we know little of their unmet palliative and supportive care needs. Previous studies of palliative care in populations of people facing liver diseases and liver cancer have cited difficulty with recruitment. Methods: This is a cross-sectional study at a single academic medical center. Participants are recruited from a multi-specialty liver cancer practice that includes surgery, interventional radiology, and medical and radiation oncology. Treating physicians identify appropriate participants from a list of pre-screened eligible individuals generated by the study team. Once enrolled validated survey instruments are used to collect data at two time points separated by one month and a qualitative interview is conducted that focuses on the experience of living with HCC. PDSA framework was used to improve recruitment procedures to a rate of 3-4 per month. Results: During the first four months we identified 19 potential participants. Of these, ten were ineligible: four did not meet timing criteria (enrollment before treatment initiation); three lacked English proficiency; and three were identified by their physician as not appropriate for the study. Of the remaining nine potential participants, four were unable to be contacted by phone, two were uninterested (including one who specifically ended the call after hearing the term palliative care), one was lost to follow-up, and two were consented and enrolled. In response, the following modifications were made to the protocol: (1) Medical eligibility criteria were liberalized so that enrollment could occur at any time during treatment; (2) a protocol to involve trained interpreters (in-person when possible) was implemented and a study team member who can conduct qualitative interviews in Spanish was added; (3) the title of the study was changed to more accurately focus on understanding quality of life (from “Palliative Care for People Facing HCC”) to address patient and physician concern; and (4) recruitment efforts are now focused on in-person introduction of the study to develop rapport. Since implementation of these changes, enrollment doubled in just one month. Conclusions: We identified actionable protocol modifications to increase study enrollment. Liberalized inclusion criteria, language inclusivity, and careful attention to stigma around palliative care may be generalizable to similar studies about supportive care, palliative care, and hospice in the population of people facing liver cancer. Additionally, avoiding language-based exclusions for lack of resources (rather than scientific ones) increases inclusivity in research and will allow for a more meaningful and accurate description of all our participants’ needs.

Body image dissatisfaction: A novel predictor of poor quality of life in epilepsy

ObjectivePeople with epilepsy have long reported reduced quality of life (QoL) compared to healthy peers. This initial study seeks to broaden our understanding of QoL in adults with epilepsy, by examining the adverse impact of body image dissatisfaction for the first time. This aim stems from the observation that both seizures and their medical treatment can cause unwanted changes to physical appearances, such as weight change, hirsutism, and acne. MethodSixty-three adults with epilepsy and 48 age- and gender-matched healthy controls were recruited from a tertiary epilepsy program and targeted social media. Participants completed an online suite of well-validated questionnaires canvassing state (current) and trait (long-term) aspects of body image dissatisfaction, mood, QoL, and medical history. ResultsPeople with epilepsy reported significantly elevated levels of trait body image dissatisfaction compared to controls across the dimensions of appearance evaluation, body areas satisfaction, and self-classified weight (p = 0.02); but did not differ from controls on state body image dissatisfaction (p > 0.05). All facets of body image dissatisfaction in participants with epilepsy were strongly associated with reduced QoL, together with heavier body weight, depressive symptoms, medical comorbidities, and a belief that epilepsy hindered their ability to attain a healthier physique. Multiple regression revealed that body image dissatisfaction was the strongest unique contributor to poor QoL in the epilepsy group (β = 0.46, p ≤ 0.001), above and beyond the contribution of current depressive symptoms (β = 0.34, p ≤ 0.01). SignificanceThis is the first study to highlight the high rates of body image dissatisfaction among adults with epilepsy, and the significantly detrimental impact it has on patient well-being. It also opens novel avenues for psychological interventions in epilepsy, that focus on enhancing positive body image as a means of holistically improving the often-poor psychological outcomes for people with this condition.

Association of syndemic conditions and quality of life among people living with HIV/AIDS

ABSTRACT The syndemics theory seeks to understand the effect of multiple synergic problems in promoting poor health outcomes. To disentangle which and how syndemic conditions affect the quality of life (QoL) may be important to improve well-being of people living with HIV/AIDS (PLWHA). This study evaluates the association between syndemic conditions and QoL among PLWHA. We performed a secondary analysis using data obtained between 2014 and 2017 among PLWHA under care in Rio de Janeiro, Brazil. The outcomes were the six QoL domains (physical, psychological, level of independence, social relationships, environmental, and spirituality) measured through the World Health Organization Quality of Life in HIV infection scale, abbreviated version (WHOQOL-HIV-BREF). The independent variables were demographic and clinical characteristics, syndemic conditions (binge drinking, compulsive sexual behavior, polysubstance use, intimate partner violence, and depression), and syndemics (two or more syndemic conditions simultaneously). Bivariate analysis (t-test and ANOVA) and linear regressions were performed for each quality-of-life domain. The analytical sample comprised 1530 participants, mostly male at birth (64%) and with median age of 43 years. The syndemic conditions most frequently observed were binge drinking (56%), IPV (13%), and depression (9%). Both individual syndemic conditions and syndemics were associated with worse QoL. In the multivariate analysis, positive screening for depression was associated with worse QoL in all domains. Polysubstance users presented worse QoL at social and environmental domains. Intimate partner violence was associated with worse QoL at environment domain while binge drinking was associated with worse scores in the physical domain. The presence of syndemics increased the likelihood of worse scores in the psychological, social, and environment domains. Our study expands the understanding of QoL in PLWHA, as it considers a holistic/integral, multifactorial, and synergistic approach to the determinants of QoL. Seeking strategies that target syndemics may be important to improve patient-centered outcomes in health. Abbreviations: HIV/AIDS: human immunodeficiency virus/acquired immunodeficiency syndrome WHO: World Health Organization QoL: quality of life HRQoL: health-related quality of life PLWHA: people living with HIV/AIDS cART: combined antiretroviral therapy IPV: intimate partner violence INI/FIOCRUZ: Evandro Chagas National Institute of Infectious Diseases Oswaldo Cruz Foundation SRH: self-rated health VL: viral load CD4: CD4 cell count NIAAA: National Institute on Alcohol Abuse and Alcoholism CSB compulsive sexual behavior WHO-ASSIST: alcohol smoking and substance involvement screening test developed by the World Health Organization PHQ-2: Patient Health Questionnaire-2

Housing, Transportation and Quality of Life among People with Mobility Limitations: A Critical Review of Relationships and Issues Related to Access to Home- and Community-Based Services

Anecdotal reports suggest that adequate housing and transportation could be fundamental elements required to ensure quality of life (QOL) for people with mobility limitations. Certain home- and community-based services (HCBS) are also necessary to ensure that housing and transportation needs are met. Understanding QOL as it relates to housing and transportation is critical for people with mobility limitations but requires appropriate assessment of these constructs. The aims of this research were to explore the relationships between housing and transportation on QOL for people with mobility limitations, to describe the current conceptual measurement issues and to propose dimensions of access that could facilitate assessment of QOL as it relates to housing, transportation and HCBS. A critical review of the literature was conducted by experts in disability, QOL and access theory. While evidence indicated a potential influence of housing and transportation on QOL for people with mobility limitations, the relationships between these concepts were weak and inconclusive. Moreover, the measurement tools used lacked appropriateness to specifically measure these constructs. Approaching these measurement issues within an access theory may better position future research to address the housing, transportation and HSBS needs of people with mobility limitations. Future research may consider elements of availability, accessibility, accommodation, affordability, acceptability and awareness to ensure access for people with mobility limitations. A better understanding of QOL as it relates to housing, transportation and HCBS will improve the quality of research, which may in turn improve access of adequate services for people with mobility limitations.

P059 QUALITY OF LIFE IN COMPLEX ABDOMINAL WALL HERNIA PATIENTS

Abstract Aim determine themes reported as important to Quality of Life (QoL) in Complex Abdominal Wall Hernia (CAWH) patients Material and Methods 15 purposively sampled CAWH patients were interviewed using topic guides (8 men and 7 women aged between 36 to 85 years [median = 65 years] covering all VHWG grades). All verbatim transcripts were coded and analysed using NVIVO12 software and Interpretative Phenomenological Analysis (IPA) until thematic saturation. Results 3 overarching groupings and 5 superordinate themes were identified. Each superordinate theme is associated with several subordinate themes: Conclusions This is the first phenomenological qualitative study in CAWH patients. The themes presented are interrelated and should shape our understanding of QoL in CAWH. Current QoL tools do not incorporate all aspects identified by this study. Further research is needed in order to generate a standardised CAWH QoL instrument which incorporates bio-psycho-emotional-social processes important to patients as identified by patients.

Quality of life perspectives for different social groups in a World Centre of Tourism and Leisure

While the quality of life (QoL) concept in tourism research has gained momentum, scholarly work has focused on host QoL and tourist-host relations, rather than exploring and analysing the perception, interpretation and understanding of QoL among different social groups in a given tourist destination. Macao is a densely populated tourism destination and designated World Centre of Tourism and Leisure, where local residents and migrants work and cohabit side by side. By broadening the scope of research through in-depth interviews, our research findings highlight how different social groups in Macao experience QoL differently. While all groups perceive positive economic impacts and appreciate career opportunities from tourism development, the analysis raises questions as to the QoL of residents and migrants, and the social sustainability of Macao. The study recommends that authorities embed a social sustainability focus in deliberations, policies and investment so as to achieve its goal of World Centre of Tourism and Leisure status, not only for tourists, but also for those who live and work there.

Boosters of satisfaction, performance and employee loyalty: application to a recruitment and outsourcing information technology organization

PurposeThis study applies an Employee Satisfaction Index (ESI) model to quantify the level of job satisfaction and explores the factors that influence employee satisfaction, performance and loyalty to an information technology recruitment and outsourcing organization in Portugal.Design/methodology/approachAs an instrument of data collection, questionnaire was applied to the company's employees, which was divided into two parts: the first part consisted of a previous questionnaire, with questions related to sociodemographic characterization; the second part consisted of the ESI. The company operates only in the information technology (IT) market, and there are currently 300 consultants with different skills.FindingsThe results confirm that the company's employees are globally satisfied, and this satisfaction contributes positively and significantly to the reinforcement of contextual performance and to their loyalty to this organization.Originality/valueJob satisfaction takes on a growing interest in understanding quality of life, strategic management and organizational performance. Job satisfaction contributes to the professional finding, that is, in employees’ activity and in adopting positive attitudes toward customer satisfaction, thus promoting organizational performance.

Well-Being and Residents’ Tourism Support – Mature Island Destination Perspective

Abstract Rapid tourism development accompanied by exponential increase in the number of tourists and visitors in destinations can disrupt the life of destination residents and negatively affect their support for (future) tourism development. On the other hand, residents economically dependent on tourism might have different attitudes toward tourism in comparison to those who are not economically involved in tourism. Several studies have found that economic dependence on tourism induces more positive perceptions of tourism impacts and higher degree of support than non-dependence. Another potential valuable predictor of tourism support could be residents’ subjective well-being, enhancing our understanding quality of life under the influence of tourism. The purpose of this study is to better understand local residents’ support for tourism development by exploring their well-being, involvement in tourism activities and perceived overall value of tourism development. In order to gain a specific perspective of island tourism destination, a sample of residents living on a small Adriatic island Vir (Croatia) was chosen. Vir is high seasonal and mature destination with annual number of visitors around 30 times bigger than the number of permanent residents. It was found that those residents who are directly or indirectly economically benefiting from tourism have significantly higher scores in personal and national well-being domains and also exhibit higher support towards future tourism development, than those who don’t experience economic benefits from tourism. Regression analysis of an island well-being perception index, revealed that tourism generates more benefits than costs and economical involvement in tourism positively affect residents’ tourism development support. On the other hand, demographic predictors (age, gender, education, income) and personal well-being index are not associated with tourism development support. The results provide important insights for researchers and practitioners on understanding residents’ perceptions of tourism in mature destinations and how those perceptions can be related both to subjective well-being and the level of involvement in tourism activities.

Real-world utilization of quality-of-life data: Perspectives from community oncology providers.

286 Background: Quality of life (QoL) is commonly assessed in oncology clinical trials. However, it is unclear if oncology healthcare providers (HCPs) perceive value in these metrics or if they impact clinical practice. We sought to assess the real-world utilization of QoL data and barriers to its adoption among US community oncology providers. Methods: Medical oncologists/hematologists, and advanced practice providers (APPs) participated in a survey to assess their perceptions and the utility of QoL data for routine practice during a live meeting in September 2019. Responses were captured via a web-based premeeting survey and an audience response system during the live meeting. Participant characteristics and responses were summarized using descriptive statistics. Results: A total of 71 HCPs (51 physicians and 20 APPs) participated. Regarding perceptions of QoL in oncology, 50% of physicians and 32% of APPs reported aligning with the sentence “It is important to have QoL, but efficacy is obviously the most critical endpoint.” HCPs reported that QoL may outweigh overall survival (OS) in certain clinical scenarios, such as in end-of-life (81%), frail patients (67%), or metastatic tumors (62%). When selecting between two agents with similar efficacy, safety was the most important factor (78%), followed by QoL (40%). 64% of physicians utilized aggregate QoL data from registrational trials or real-world studies to keep informed about QoL of different treatments, while 69% of APPs relied on their personal or practice experiences. 85% of physicians and 84% of APPs responded that it is important to perform formal QoL assessments during routine patient visits. 88% of HCPs expected that QoL/patient-reported outcomes (PRO) collection will increase their workload. Patient burden (58%) and provider resources (43%) were other barriers for QoL/PRO collection. HCPs were largely split regarding their understanding of QoL versus PRO, with 34% reporting that PRO was a subset of QoL and 28% reporting that QoL was a subset of PRO. Conclusions: Efficacy and safety are prioritized as clinical endpoints among oncology HCPs; however, there are certain clinical scenarios where QoL may provide more impactful data for HCPs in managing patients. Barriers remain to successful collection of QoL, and there is a need for further education among HCPs regarding PROs and QoL.

CLL-322: A Systematic Review of Quality of Life in Chronic Lymphocytic Leukemia Patients throughout the Disease Continuum

Context Recent advancements in chronic lymphocytic leukemia (CLL) treatment modalities have led to improved patient outcomes, including quality of life (QoL). Such QoL data have primarily been derived from eligible patients undergoing therapy as part of a clinical trial with limited data from real-world patients. Current CLL therapies are not deemed curable, making QoL an important consideration in patient management. Approximately 80% of newly diagnosed patients are managed on active surveillance until International Workshop on CLL criteria for therapy are met. More than 60% of patients are over the age of 65 with comorbid conditions that can be exacerbated either by CLL-related symptoms during active surveillance or by therapy. Clinicians caring for CLL patients should be cognizant of factors impacting QoL in an effort to optimize clinical decision-making while aligning with patient goals. Objectives Systematically review and summarize QoL data from research conducted with adult CLL patients at any point in the disease continuum. Identify knowledge gaps in the literature with implications for future interventional-based research aimed at improving QoL in CLL patients. Design A systematic literature search using appropriate key words was conducted in Embase, PubMed, CINAHL, and PsycINFO to identify studies published from 2009 to 2020. The focus population consisted of CLL patients ≥18 years old affected by any disease stage or treatment status. All studies using self-reported QoL or a symptom instrument were eligible for inclusion. Results Searches of Embase, PubMed, CINAHL, and PsycINFO yielded 445 studies with 54 meeting eligibility for inclusion. Two-author review is underway in Covidence, with a final report to be presented at the meeting. Conclusions The impact of QoL throughout the CLL disease continuum is an important consideration for patient management. Clinicians should incorporate known concepts affecting QoL into CLL management algorithms as part of a multidisciplinary approach to optimize shared decision-making in patient care. Improved understanding of QoL in CLL patients provides the framework for designing effective interventions to address unmet patient needs. Further QoL research is needed in real-world CLL patients.

Exploring and Addressing 'Concerns' for Significant Others to Extend the Understanding of Quality of Life With Amyotrophic Lateral Sclerosis: A Qualitative Study.

Background:The absence of curative medication for amyotrophic lateral sclerosis (ALS) makes palliative care and understanding quality of life (QoL) in ALS a clinical priority. Previous qualitative research has explored the concept of QoL in terms of illness impact on life perspectives and sense of self.Objective:In this research, we explored ‘concerns’ – one of the four aspects in the World Health Organisation’s conceptualisation of QoL – towards adding to the literature.Methods:In-depth interviews with 26 individuals with ALS were subjected to thematic analysis involving both inductive and deductive approaches to explore participant’s concerns, and to evaluate the relevance of their concerns for understanding QoL in ALS.Findings:The analysis showed that concerns for significant others contribute to participant’s QoL because of their existential value. It was important for participants to minimise the impact of limitations and burdens associated with ALS on significant others, even at a cost to self.Discussion:The current study supports a holistic approach in service provision, ensuring the inclusion of relevant significant others. It is further suggested that clinicians explore the specifics of burdens perceived by patients in order to support them in minimising the burdens for their significant others.

Abstract P4-20-03: Collateral damage from metastatic breast cancer – Preliminary results

Abstract BACKGROUND: Historically, research efforts have focused on developing new treatments, education, and support programs for metastatic breast cancer (MBC) patients. Less emphasis has been placed on understanding quality of life (QoL) issues for this underserved population. However, when faced with a metastatic diagnosis, managing, and minimizing the collateral damage resulting from sequential and often continuous treatments is critical to improving quality of life. Through this preliminary analysis, our aim is to understand the unique experience of MBC and identify potential areas of critical need. METHODS: The Health of Women (HOW) Study™ is an online study for women and men, with and without a history of breast cancer, aimed at identifying causes of breast cancer. The (HOW) Study periodically releases new questionnaires and is currently comprised of ten questionnaires collecting information on personal and family health history, lifestyle, environmental exposures, breast cancer diagnosis and treatment, and QoL. Over 53,000 people are enrolled in (HOW), of which, 11,508 have completed the QoL questionnaire. Areas covered included chronic conditions, symptoms, moods and feelings, reproductive health, daily activities, patient-provider communication, and social and financial concerns. QoL measures were compared between participants with no history of breast cancer (NoHx), with non-metastatic breast cancer (non-MBC), and with MBC. RESULTS: Of the 11,508 respondents, 3,965 reported a diagnosis of breast cancer—of those, 205 were metastatic. The majority were female (99%) and non-Hispanic White (95%). MBC were younger (28%&amp;lt;50 years, 65% 50-69 years) than non-MBC (20%&amp;lt;50 years, 69% 50-69 years; p&amp;lt;0.05). Overall, participants with MBC reported a lower QoL (20% excellent, 10% poor) than non-MBC (41% excellent, 3% poor) and NoHx participants (44% excellent, 2% poor; p&amp;lt;0.05). MBC and non-MBC participants did not differ on hot flashes, vaginal problems or fertility concerns. However, MBC participants were more likely than non-MBC participants to report: 1) Symptoms — including digestive, mouth and nose, hair and skin, eye, pain, fatigue and night sweats — significantly affecting their lives; 2) Problems with concentration, mood swings, anxiety, depression, memory, and sleeping; 3) Attributing each symptom and/or problem to their breast cancer treatment; 4) Problems performing daily activities; 5) Better communication with their clinical team; 6) Severe financial concerns including difficulty with medical expenses, losing one's job and/or health insurance, not meeting the financial needs of one's family and not being able to pursue career of choice; and 7) Severe social concerns including feeling dependent, isolated, and being treated differently (all p-values&amp;lt;0.05). CONCLUSIONS: Participants with MBC had a considerably diminished QoL compared to non-MBC and NoHx participants. We identified key areas of concern and multiple areas of collateral damage not standard in research assessment. Our next steps are to use these data to develop a formal, qualitative questionnaire that includes newly identified collateral damage issues, and expand our sample of MBC. The combined data will guide us in developing recommendations for improving the QoL for people with MBC. Citation Format: Love SM, Bernstein L, Obidegwu A, Ottenbacher A, Eshraghi L, Clague J. Collateral damage from metastatic breast cancer – Preliminary results [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P4-20-03.

Critical Appraisal of the Evidence on Quality of Life and Psychological Outcomes in Infants and Young Children with Congenital Heart Disease

Background: Quality of life (QOL) in young children with congenital heart disease (CHD) is poorly characterised. Better understanding of QOL during these formative years could enable earlier identification of difficulties and timelier intervention. This systematic review aimed to synthesise literature examining QOL, psychosocial and behavioural outcomes in children aged ≤5 years with CHD. It also aimed to identify demographic, clinical, and psychosocial determinants of these outcomes. Methods: A systematic literature search was performed using five electronic databases; Medline, Embase, PsycINFO, CINAHL, Scopus. Articles were included if they reported on parent-proxy or self-report outcomes associated with QOL, emotional wellbeing or behavioural functioning for children with CHD with a mean age of 0-5 years. Risk of bias was appraised using the QualSyst framework. Results: Thirty-eight articles were reviewed, with data from 3,841 children with CHD. Most studies (6/8) assessing QOL found poorer QOL in children with CHD compared to normative data or healthy controls. Emotional functioning was poorer in children with CHD than comparator groups in 13/20 studies. All studies (11/11) assessing adaptive behaviour and functional living skills reported impairments, with a need for clinical intervention indicated in 8-79% of children. Parental stress was the most common predictor of QOL-related outcomes. Conclusion: Young children with CHD demonstrate greater impairment than comparator groups in QOL, emotional wellbeing and behavioural functioning, highlighting the need to identify these problems in clinical settings. Prevalence and determinants of these impairments vary markedly, thus research effort should be directed towards more accurately characterising these outcomes in this population.

Review: Graciela Tonon (Ed.) (2015) Qualitative Studies in Quality of Life: Methodology and Practice Springer

Generally, when we think of Quality of Life research, we think of standardised measures that provide comparative indices that can be compared across time and space. This dominant approach to measuring and monitoring quality of life has utilised selfreporting mechanisms using quantitative, or a mix of quantitative and qualitative methods. In adopting a particular kind of approach to what is scientific, these studies represent a certain kind of approach that has become influential, characterised by a particular view of the scientific enterprise, with an associated epistemology and ontology. Yet this oeuvre of work, which has contributed significantly to understanding the determinants of subjective well-being, is not entirely reflexive about its own tools. As a whole, important steps have been taken towards positivity and universality in understanding quality of life. Nevertheless, progress has been slower in terms of quality of life research that seeks to involve participants as reflexive and critical agents. While much debate centres on the robustness of standard measures, there is very little by way of quality of life research where questions of ontology, epistemology and axiology are central and through which a critical reflection on the choice of methods most appropriate for the research task at hand is undertaken. Rather, the more dominant approach to Quality of Life studies disembeds and decontextualises the practice of research from its research subject. This is perhaps odd, given that ‘quality of life’, as both an experience and a conceptual category, is always context bound and normative. We cannot measure quality of life unless we have a clear idea, whether acknowledged or not, of what the ‘good life’ is, or of the related concept, ‘subjective well-being’ ,w hich is central to the Quality of Life approach. In social science research, the term ‘subjectivity’ refers to an individual’s ‘inner’ world of experience. Generally in research on subjectivities, researchers focus on the

Quality of Life and Clinical Characteristics in a Non-selected Sample of Patients with Schizophrenia

Introduction Patients with schizophrenia experience lower quality of life (QOL) than the general population. Improving QOL is both challenging and desirable. Objectives To broaden the understanding of QOL in patients with schizophrenia to facilitate development of treatment strategies. Aims To assess QOL in patients with schizophrenia and to examine the relation of QOL with a) illness duration b) antipsychotic treatment (defined daily doses, ddd), c) body mass index (BMI) and d) smoking. Methods In this naturalistic, cross-sectional study patients were interviewed to obtain smoking habits, they completed a QOL questionnaire (WHOQOL-Bref, composed of a physical, psychological, social and environmental domain) and had height and weight measured. Patients were grouped as first-ever diagnosed or long-term ill. Characteristics were correlated to QOL using multiple regression analysis. Preliminary Results 82 participated. Mean QOL was comparable to prior studies. A number of characteristics were significantly associated with the four QOL domains. The regression coefficients and significance levels are presented in Table I. Conclusion Patients with schizophrenia experienced a low QOL. The following characteristics were significantly associated with lower QOL in a) first-ever diagnosed: high BMI, low ddd and smoking habits and b) long-term ill: high BMI and short illness duration. Changing these might improve QOL in patients with schizophrenia.