Quality Of Life Issues Research Articles

Integration of User Generated Geo-contents and Official Data to Assess Quality of Life in Intra-national Level

Gaining knowledge about the condition of quality of life (QoL) in different geographical regions has always been one of the concerns of the decision-makers. Dynamic and multi-dimensional characteristics of QoL ask for new data sources to update the relevant indicators and novel methods for QoL assessment. This research presents a comprehensive framework for assessing QoL in intra-national level. To address current challenges, the focus has been on integrating subjective and objective criteria, using the geotagged Tweets as user-generated geo-contents (UGGCs) to extract some subjective criteria, and utilizing a multi-criteria decision-making framework based on the cumulative belief degree (CBD) method to integrate and provide the final output. The proposed framework is implemented to assess the QoL in the provinces of Iran as the case study. Based on the obtained results, Tehran has a better QoL status, while Sistan-and-Balouchestan and Kermanshah have rather unsuitable conditions compared to other provinces. Results show the potential of the UGGCs to cover the dynamic characteristics of QoL and to complement the official data. Also, the functional capabilities of the CBD method in integrating heterogeneous criteria, handling uncertainty, and suitably providing the final results of QoL assessment in different scenarios allow authorities to get a more comprehensive, realistic view on QoL issues. The proposed method of this research is a step toward an integrated assessment of QoL using the data shared by people in the location-based social networks which could be regarded as a novel and useful tool for administrators in the field of QoL.

Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes on quality of life issues in dermatologic patients during the COVID-19 pandemic.

The pandemic of COVID‐19 is a global challenge for health care, and dermatologists are not standing apart from trying to meet this challenge. The European Academy of Dermatology and Venereology (EADV) has collected recommendations from its Task Forces (TFs) related to COVID‐19. The Journal of the EADV has established a COVID‐19 Special Forum giving free access to related articles. The psychosocial effects of the pandemic, an increase in contact dermatitis and several other skin diseases because of stress, disinfectants and protective equipment use, especially in healthcare workers, the temporary limited access to dermatologic care, the dilemma whether or not to pause immunosuppressive therapy, and, finally, the occurrence of skin lesions in patients infected by COVID‐19 all contribute to significant quality of life (QoL) impairment. Here, we present detailed recommendations of the EADV TF on QoL and patient‐oriented outcomes on how to improve QoL in dermatologic patients during the COVID‐19 pandemic for several different groups of patients and for the general population.

Elegant security: Concept, evidence and implications

Some security devices can be ugly, inconvenient or an infringement on civil liberties. This means that security is a quality of life issue as well as one of crime prevention. Here we propose that, in addition to preventing crime and being cost effective, security should preferably be ethical and unobtrusive, aesthetically neutral or pleasing, and the easy-to-use or default option. We describe security with such characteristics as ‘elegant’. We use two case studies to explore how, as many types of crime have declined in recent decades, there was an increase in elegant and a decrease in inelegant security. We suggest that the lifecycle of some security technologies sees them evolve from inelegant to elegant, that continual improvement is required to keep ahead of offender adaptations, and that inelegant security can fall into disuse even if it prevents crime. It is hoped that this conceptual contribution might inform discussions about the appropriate form and role of security.

The Other Side of Through: Young Breast Cancer Survivors' Spectrum of Sexual and Reproductive Health Needs.

The long-term reproductive health impact of cancer treatments is a concern for premenopausal women with a history of breast cancer. This study examined the unmet sexual and reproductive health needs of breast cancer survivors, as well as concordances and discordances in needs by childbearing status and race. We interviewed 17 women diagnosed with breast cancer between the ages of 18 and 45 years and living in North Carolina. To analyze these data, we used the Sort and Sift, Think and Shift© method, a multidimensional qualitative analysis approach. We learned that breast cancer survivors (a) received limited reproductive health information, (b) desired realistic expectations of conceiving postcancer, (c) struggled with adjusting to their altered physical appearance, and (d) had menopause symptoms that led to sexual health and quality of life issues. Breast cancer survivors are in need of and desire more education and resources to address their sexual and reproductive health concerns.

Growing older with lifelong disability: What is “quality of life” in the middle years?

Accessible Summary In the past 30 years, many people with (intellectual) learning disabilities have been moved out of large “institutions” and into their own home in their local community These people are now often between 30 and 50 years old We asked people with learning disabilities aged between 30 and 50 and who are living in their local community what things, including work, that they enjoyed doing We asked people with learning disabilities aged between 30 and 50 and who are living in their local community whether they felt that they could make decisions about their life We found out the things that make their life good, and also what might stop people enjoying their life We learnt that people with learning disabilities should receive more support to assist them before they retire We learnt that people with learning disabilities still need more support and choice around who they live with AbstractBackgroundThis study investigated perceived quality of life (QoL) of community‐dwelling middle‐aged adults (30–50 years) with an intellectual disability and/or developmental disability living in rural or urban areas in New South Wales and Queensland, Australia. The specific aim of the current paper was to provide a descriptive evidence base of QoL and its specific domains by various key demographic characteristics of middle‐aged individuals. This cohort is likely to have either experienced or reached adulthood during and after large‐scale deinstitutionalisation in Australia.Methods and proceduresA cross‐sectional design was utilised, based on the QoL‐Q survey, testing domains of satisfaction; Competence/Productivity; Empowerment/Independence; and social belonging/community integration. The survey included demographic questions and was distributed to participants through disability support agencies across two states. The final sample included 291 respondents.ResultsThe overall QoL‐Q scores ranged from 3.0 to 29.5 (Mean = 20.4, SD, 4.1), with considerable variation in mean scores both across and within domains. The two demographic areas that showed greatest predictive value for QoL were work status and accommodation issues. The loss of agency and control in choice of co‐residents influenced perceived QoL for empowerment and independence domain of QoL‐Q.ConclusionsThe findings highlight QoL issues associated with policy decisions and support programmes for middle‐aged adults. The two key recommendations arising from the project are that future planning for post‐retirement or reduced working hours needs to commence at a much younger age than currently expected, and more attention needs to focus on facilitating individual decision‐making and choice within shared accommodation options.

HEALTH-RELATED QUALITY OF LIFE AMONG NURSING STUDENTS IN SOUTHERN VIENAM: AN APPLICATION OF THE WORLD HEALTH ORGANIZATION QUALITY OF LIFE INSTRUMENT, SHORT FORM

Context: The lives of nursing students are similar to those of students in non-medical fields, but the former face numerous learning- and research-related difficulties that cause them strain and other problems. Therefore, to provide solutions that help these individuals improve their health, well-being, and happiness, it is important to assess their quality of life (QOL). Objectives: This study aimed to investigate the QOL of nursing students in southern Vietnam to acquire evidence regarding the effects of socio-economic status on QOL. Methods: This cross-sectional study was conducted from March to May 2019 with 74 and 394 urban and rural participants, respectively. A self-administered questionnaire, which combines the World Health Organization QOL Instrument, Short Form (WHOQOL-BREF) and a sociodemographic instrument, was also used to collect data. Results: The mean scores of the urban and rural respondents on general awareness about QOL and health issues were 3.35 and 3.07, respectively, indicating that they were somewhat dissatisfied with their health and QOL. The students scored highest in the physical health domain and the lowest in the environmental domain. The four domains of QOL (physical health, psychological health, social relationships, and environment) were affected by gender, academic year level, community, and monthly spending. Conclusion: This research emphasizes the need to elevate the QOL of nursing students during their training.

1129 Sex Dependent Effects on Sleep Architecture After Traumatic Brain Injury: Impact on Outcome

Abstract Introduction Traumatic Brain Injury (TBI) is frequently associated with problems with sleep and diurnal somnolence. After determining if subjective somnolence was associated with sleep disturbances, we investigated if alterations in sleep architecture were associated with cognitive, social and emotional health in a sex dependent manner. For patients receiving positive airway pressure (PAP) treatment, we determined if lack of compliance contributed to cognitive and quality of life issues. Methods Adult TBI subjects (n=57) were assessed via overnight polysomnography. Mean age was 41 years and mean TBI chronicity was 2.5 years. Overall level of disability was determined by the Mayo Portland Inventory II. Sleep measures included slow wave sleep (SWS), REM latency, percent time in all sleep stages, apnea/hypopnea index, wake after sleep onset (WASO), and arousal index. Outcome measures were the California Verbal Learning Test (CVLT), Montreal Cognitive Assessment (MoCA), Trails A and B, Beck Depression Inventory, and Neuro-QoL. Results No sex effects for reporting somnolence were found. Besides being associated with increased subjective anxiety and stigma, somnolence was associated with increased arousals, decreases in SWS and higher incidence of REM AHI. WASO and number of arousals had a negative impact on the amount of SWS and sleep efficiency. Men spent significantly more time in REM sleep, which was correlated with higher scores on the MoCA and CVLT. Women showed more disability. Longer latencies to SWS were associated with increased CVLT performance. AHI was associated with increases in emotional/behavioral dyscontrol, fatigue and self-reported sleep disturbance. All effects were statistically significant. Conclusion Female TBI patients show significant impairments in REM sleep, which may impact learning and memory. Sleep disturbances were associated with poorer cognitive performance and may ultimately affect outcome, as indicated by lower scores on quality of life measures. Support Centre for Neuro Skills

EDUCATION AND SUBJECTIVE WELL-BEING IN THE CONTEXT OF ASSESSMENT OF QUALITY OF ADULTS LIFE

In recent decades, quality of life issues and research have been increasingly focused on seeing a direct link between indicators of subjective well-being and economic growth. In Latvia, the issue of subjective well-being has also been raised in recent years in population surveys, but there are no trends in emphasizing the importance of these indicators in the context of quality of life.In Latvia, education is included in the statistical data collection among the most important quality of life indicators. In Latvia, the level of life satisfaction decreases most rapidly at the age of 45-54.Purpose of the article: to research the components of quality of life in Europe and Latvia, identify significant indicators for the mantaining of adult quality of life and view on education and subjective well-being in the context of assessment of quality of adults life.Method: the study carried out an content analysis of the data of Eurostat population quality of life surveys, the EU and the Republic of Latvia's official guidelines on quality of life and lifelong learning, as well as pedagogical and psychological literature and scientific articles on quality of life, subjective well-being and adult education issues. Results: according to survey data, adults with higher level of education experience higher level of participation in lifelong learning activities; the level of education affects the assessment of life satisfaction.

Patient-reported global health predicts adverse health outcomes in a cohort of patients with advanced sarcoma.

e23547 Background: Given the rare nature of sarcoma cancers and the sometimes severe treatment-related effects of chemotherapy, many patients with sarcoma face quality of life issues during treatment. Unplanned hospital admission and emergency room (ER) visits can occur from uncontrolled symptoms and ultimately delay treatment regimens and negatively impact quality of life. The PROMIS Global Health v1.2 (PROMIS-10) surveys are validated tools to assess patients’ physical and mental well-being at the time of the survey. We sought to evaluate the correlation between PROMIS-10 scores and adverse outcomes of interest, including unplanned admissions/ED visits and patient mortality. Methods: All patients currently seen in the Sarcoma Clinics at Ohio State University routinely complete the PROMIS-10 survey at each clinic visit. For this pilot study, we collected the raw and normalized t-scores for PROMIS-10 surveys for all patients consented to The Ohio State University Sarcoma Registry (OSU-14242) from 6/1/2018 to 11/20/2019. We also collected data on unplanned hospital admission/ED visits and mortality data for each patient. Results: A total of 864 surveys for 112 patients were collected for the study period. The median number of surveys answered per patient was 6. Mean global physical t-scores (43.7 ± 8.5) and mental t-scores (47.9 ± 9.2) were lower than reference scores for the general US population (p < 0.001). 109 of 112 patients experienced an unplanned admission or ED visit during the study, with a total of 270 such encounters during the study period. PROMIS-10 scores were slightly but significantly lower for patients experiencing an admission or ED visit within 30 days of taking the survey (physical: 41.9 vs 44.1, p = 0.006; mental: 46.4 vs 48.2, p = 0.035). A total of 26 patients died during the study period; surveys completed prior to death were consistent with a greater level of physical and mental distress, with the median physical t-score = 34.9 (range: 23.5 – 50.8) and mental t-score = 43.5 (range: 33.8 – 67.6). Conclusions: We showed that we are able to obtain worthwhile data to objectively evaluate patients’ physical and mental well-being through survey data during cancer treatment. We are currently performing additional confirmatory analysis of the predictive value of the PROMIS-10 survey for adverse events and for treatment-related complications.

Quality-of-Life Trajectories in Adolescent and Young Adult versus Older Adult Allogeneic Hematopoietic Cell Transplantation Recipients.

Hematopoietic cell transplantation (HCT) is physically and psychologically challenging, potentially exposing patients to quality-of-life (QoL) impairments. Adolescent and young adults (AYAs, aged 15 to 39 years) are a vulnerable cohort facing multiple hurdles due to dynamic changes in several aspects of their lives. The AYA population may be particularly prone to QoL issues during HCT. We hypothesized that due to the unique psychosocial challenges faced by AYAs, they would have an inferior quality of life. We studied QoL differences between AYA (aged 15 to 39 years) and older adult (aged 40 to 60 years) allogeneic HCT recipients before and after HCT. Additionally, we determined if pre-HCT QoL for AYA transplant recipients changed over time. QoL data were collected prospectively before and after transplant on 431 recipients aged 15 to 60 years from June 2003 through December 2017 using the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT) questionnaire. Repeated-measures analysis of variance was used to assess differences among age groups. Pearson correlation (r) was used to determine if baseline QoL had improved after HCT from June 2003 through December 2017 in the AYA cohort. QoL did not differ among younger AYAs, older AYAs, or older adults at any time in the first year after allogeneic HCT. At 1 year post-HCT, total FACT-BMT score and all FACT-BMT domains except physical well-being improved from pre-HCT in all age groups. From 2003 to 2017, AYA allogeneic recipients experienced modest improvement in additional concerns (r=0.26, P=.003), trial outcome index (r=0.23, P=.008), and total FACT-BMT score (r=0.19, P=.031), although no improvements were seen in physical, social, emotional, or functional well-being. Contrary to our hypothesis, we found that QoL in the AYA population is similar to that of older adults before and after HCT. Improvements in QoL of AYA allogeneic patients since 2003 were driven by the additional concerns domain, which addresses multiple psychosocial aspects such as vocation, hobbies, and acceptance of illness. Continued efforts to tailor treatment and support for AYA HCT recipients is critical to improving QoL outcomes.

Traumatic Spinal Cord Injury and the Gut Microbiota: Current Insights and Future Challenges.

Individuals with traumatic spinal cord injury (SCI) suffer from numerous peripheral complications in addition to the long-term paralysis that results from disrupted neural signaling pathways. Those living with SCI have consistently reported gastrointestinal dysfunction as a significant issue for overall quality of life, but most research has focused bowel management rather than how altered or impaired gut function impacts on the overall health and well-being of the affected individual. The gut-brain axis has now been quite extensively investigated in other neurological conditions but the gastrointestinal compartment, and more specifically the gut microbiota, have only recently garnered attention in the context of SCI because of their vast immunomodulatory capacity and putative links to infection susceptibility. Most studies to date investigating the gut microbiota following SCI have employed 16S rRNA genomic sequencing to identify bacterial taxa that may be pertinent to neurological outcome and common sequalae associated with SCI. This review provides a concise overview of the relevant data that has been generated to date, discussing current understanding of how the microbial content of the gut after SCI appears linked to both functional and immunological outcomes, whilst also emphasizing the highly complex nature of microbiome research and the need for careful evaluation of correlative findings. How the gut microbiota may be involved in the increased infection susceptibility that is often observed in this condition is also discussed, as are the challenges ahead to strategically probe the functional significance of changes in the gut microbiota following SCI in order to take advantage of these therapeutically.

Rethinking patient–provider care through visual communication

The case study presented in this article developed an improved intervention for visually communicating with persons diagnosed with a communication disorder known as aphasia. The Visual Interactive Narrative Intervention (VINI) assists health-care providers in educating post-stroke persons with aphasia (PWA) about their stroke, symptoms, rehabilitation options, and quality of life issues. Visual communication is under-utilized to convey health information to PWA despite its ability to capitalize on their intact cognitive and visual processing. The current Reflections on Practice summarizes visual guidelines from previous research, discusses visual design principles to achieve these guidelines, and presents a case study of creating visual stimuli for PWA based on these considerations and initial pilot testing with PWA. The case study demonstrates the creative process, the visual design considerations, and the interdisciplinary effort (i.e. health professionals, artists, and communication scholars) necessary for visually communicating with PWA.

Setting a research agenda for vascular Ehlers-Danlos syndrome using a patient and stakeholder engagement model

ObjectiveVascular Ehlers-Danlos syndrome (vEDS) is a rare, syndromic, heritable condition with life-threatening complications that include aortic and arterial aneurysms, dissection, and rupture. This study describes the formation of the vEDS Research Collaborative and methods used for stakeholder engagement. MethodsThe vEDS Research Collaborative was established with an engagement award from the Patient-Centered Outcomes Research Institute to create a framework for a patient-researcher partnership. Between October 1, 2017, and September 30, 2018, the Collaborative used the Patient-Centered Outcomes Research Institute Engagement Rubric to conduct stakeholder engagement to develop a patient-centered research agenda. A modified Delphi technique was used to develop and to refine research topics and questions, gathering input from all stakeholders during three rounds of feedback. ResultsFour topic areas were deemed important: mental health and quality of life issues, creating a care team, a holistic approach to vEDS management (medical and surgical), and pregnancy management. An online survey to rank a list of 12 research questions in these topic areas in order of importance was disseminated. The questions were ranked in order of importance through an online survey (N = 197 responses). The survey showed a high degree of alignment in the top priorities among stakeholders. There was a high degree of interest in pragmatic clinical trials evaluating medical management options and health-related quality of life outcomes. ConclusionsThe vEDS Research Collaborative has built a sustainable, coalition model of patient and stakeholder engagement, supported by the vEDS community, to identify a patient-centered, prioritized list of research questions. In articulating a shared vision for the future of vEDS research, the Collaborative has laid the groundwork for developing research protocols aligned with the highest priority questions for the individuals affected by this serious condition that can be translated into future clinical trials.

The prevalence of altered body image in patients with primary brain tumors: an understudied population

PurposeBody image (BI) is an important issue for cancer patients, as patients with BI concerns are susceptible to depression, anxiety, difficulty coping, and poor quality of life (QoL). While this concern has been documented in patients with other malignancies, no data exists of this QoL issue in patients with primary brain tumors (PBT).MethodsA cross-sectional survey of 100 PBT patients was conducted on an IRB approved prospective protocol using structured questionnaires. Participants completed the body image scale (BIS), Appearance Scheme Inventory Revised (ASI-R), MD Anderson Symptom Inventory Brain Tumor (MDASI-BT), and Patient-Reported Outcomes Measurement Information System (PROMIS) Depression, Anxiety, and Psychosocial Impact Positive measures.ResultsThe prevalence of clinically significant body image dissatisfaction (BIS ≥ 10) was 28% (95% CI 19–37%), median BIS score was 5 (range 0–27). The median ASI-R composite score was 2.9 (range 1.5–4.7). BIS was significantly correlated with the ASI-R (r = 0.53, 95% CI 0.37 to 0.65). The mean PROMIS Depression score was 48.4 (SD = 8.9), PROMIS Anxiety score was 49.4 (SD = 9.9), and PROMIS Psychosocial Illness Impact Positive score was 48.9 (SD = 9.7). BIS was significantly correlated with age, and trended with BMI and sex. The PROMIS Psychosocial Illness Impact Positive and PROMIS Anxiety scores were the most strongly related to BIS.ConclusionsThis study, the first to explore altered body image in PBT patients, revealed clinically significant body image dissatisfaction in nearly 1/3 of patients, similar to other malignancies. These findings underscore the potential contribution of disease and treatment-related body image concerns on psychosocial wellbeing in patients with PBT.

Abstract P1-15-10: Updating Frankly Speaking About Cancer: Metastatic Breast Cancer educational book

Abstract Background In 2006, the Cancer Support Community (CSC) launched its Frankly Speaking About Cancer: Metastatic Breast Cancer (MBC) patient education program. This program raises awareness among patients and caregivers about MBC, current treatment options, managing side effects, psychosocial impacts, and fostering an open dialogue with their health care team. Since launching the Frankly Speaking About Cancer: MBC program in 2006, more than 3,800 people have attended our workshops. We have also distributed over 68,000 educational books and worksheets and over 382,000 page views have been recorded for the MBC content on our website. Survey findings from program participants show that 96.5 percent would recommend the program to others. CSC continues working to educate MBC patients and provide them with psychosocial support. In service of this effort, in 2018, CSC revised and enhanced its MBC educational materials with patient and caregiver input to ensure it meet their needs. The revised book also provides additional resources on getting support, finances, and information for patients and caregivers. Methods CSC leveraged findings from MBC patients enrolled in our Cancer Experience Registry® online research initiative, as well as feedback from experts on our MBC Advisory Board, to update the Frankly Speaking About Cancer educational book for people affected by MBC. Focus groups and online community bulletin boards (N=24 adult female MBC patient) were conducted to review the revised book. Participants were asked to give feedback about: ease of understanding; utility for decision making about MBC treatment decision-making and communicating with the health care team; reactions to specific sections and resources included in the book; and suggestions for improvement. Participants’ feedback were recorded and transcribed. The updates and enhancements made to the book were based on the feedback received. Results Findings from focus group research indicate that: • Patients found the FSAC: MBC book to be useful for all of those that have received a MBC diagnosis and their loved ones. • Participants reported that the information provided in the book was easy to understand, and believed that the way the information is displayed supported the messages, which included topics like understanding MBC; communicating with your health care team in an empowered way; questions to ask your doctor; treatment information and treatment decision making, including clinical trials; side effect management; psychosocial support and survivorship; lifestyle management. • Participants suggested the need to include more in-depth information about the financial implications of a MBC diagnosis and treatment and had several suggestions for additional financial resources to be included. Discussion These findings suggest that the enhanced FSAC: MBC book can serve as a unique asset in the realm of cancer patient education, as it covers both cancer treatment and quality of life issues in a manner intended to empower individuals and their families to work in partnership with their health care team and be active participants in their treatment decisions. Regarding implementation, CSC distributes the FSAC: MBC book at no charge to MBC patients and caregivers via its internal network of more than 50 affiliates worldwide, the CancerSupportCommunity.org webpage, the Frankly Speaking About Cancer radio show, and partner patient advocacy groups. We would also like to make patient navigators aware of this educational book and allow them to order/download it, at no charge, to make it available to those impacted by a MBC diagnosis, as well as health care providers. Citation Format: Claire Saxton, Maria Gonzalo, Amelia Robert, Sheri Walters, Jenny Karubian, Alexandra K Zaleta. Updating Frankly Speaking About Cancer: Metastatic Breast Cancer educational book [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P1-15-10.

Abstract P6-12-05: Hear our voices: Dear oncologist, this is what I need you to know

Abstract Background/rationale: Living with metastatic breast cancer (MBC) presents unique and complex clinical, psycho-social and quality of life issues. MBC patient voices need to be heard to ensure high quality healthcare delivery and positive outcomes. Most studies on patient needs, communication preferences and support focus on the early breast cancer setting, and relatively little attention has been given to the needs and experiences of those of us living with MBC. The present qualitative study fills a critical gap in oncology healthcare delivery science by identifying MBC patient needs and preferences, and provides patient-driven solutions that will help health care teams work better with us through open communication, shared decision making and mutual trust.Methods: Using an approach modeled on community based participatory research, this qualitative study was patient led and patient informed. Peer-to-peer networks and in-depth interviews were used to collect insights into what MBC patients want their oncologists to know, what works well in fostering open communication and trust, and suggestions for feasible, actionable enhancements. Requests for input were posted on several social media groups reaching approximately 800 patients living with MBC. Additionally, 36 women and six men living with MBC were invited to participate in one-on-one interviews. A stratified sampling framework was used to identify interview participants to ensure adequate representation by age, race, geography and gender. Results: Ninety-seven women living with MBC shared their input to questions posted on the social media groups, and 32 women and six men participated in interviews. Many respondents recognize and appreciate that their oncologists actively listen, sometimes use shared decision making, and provide high quality care. Several themes and recommendations for enhancing healthcare delivery emerged. Dominant themes included: Delivering scan results without delay; Providing clinical trial information and support early and regularly; Understanding the psychological impact of facing mortality; Thinking outside the box and tailoring treatments to the patient’s unique disease characteristics; Opening the door (carefully) to difficult topics that many patients find hard to bring to their oncologist, such as emotional, cognitive and psychological difficulties, needing counselling, end of life care, relationship issues, sexual dysfunction, infertility. Participants offered a number of practical suggestions for how to effectively integrate the patient voice into clinical care.Conclusions: Including patients’ voices is recognized as a critical component of quality healthcare, leading to mutual trust, better decisions, increased patient satisfaction and improved outcomes. The results from this study provides patient derived guidance on how to incorporate our voices in clinical practice. Citation Format: Marina Kaplan. Hear our voices: Dear oncologist, this is what I need you to know [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P6-12-05.

Crime and fear in Hollygrove – building neighbourhood resilience

ABSTRACT This chapter describes a case study in social capacity building from the New Orleans neighbourhood of Hollygrove following Hurricane Katrina in 2005. Using an action research case study approach, we describe the journey of Hollygrove residents in rebuilding their neighbourhood, focusing on a ten-year period beginning with initial community initiatives in 2008 that led to SafeGrowth training workshop in 2009 and subsequent programming in the following years. The SafeGrowth programmes equipped the resident teams with problem-solving and leadership skills, after which they enacted a series of projects to cut crime and fear. Their newfound skills helped build their capacity to resolve crime problems and facilitate community development. They also discovered how to collaborate with municipal partners to sustain their success and overcome long-standing quality of life issues. We demonstrate how the action research praxis inherent within SafeGrowth offers power for problem-solving and community empowerment, thereby creating a more resilient neighbourhood.

Health-Related Quality of Life Issues of Patients Affected by Desmoid-Type Fibromatosis; Experiences from Two Countries

Health-Related Quality of Life Issues of Patients Affected by Desmoid-Type Fibromatosis; Experiences from Two Countries

Commentary - “Maxillomandibular Advancement for Obstructive Sleep Apnea Is Associated With Very Long-Term Overall Sleep-Related Quality-of-Life Improvement”

Purpose We sought to evaluate the effect of maxillomandibular advancement (MMA) on long-term subjective quality of life (QOL) in obstructive sleep apnea (OSA). Patients and Methods This was a retrospective cohort analysis of long-term postoperative QOL issues in patients who underwent MMA for polysomnogram-confirmed severe OSA (apnea-hypopnea index > 30). The inclusion criteria included a history of MMA in the treatment of OSA, willingness to complete the Ottawa Sleep Apnea Questionnaire (OSA-Q) survey, and minimum of 5-year follow-up. The OSA-Q was used to evaluate sleep quality, daytime function, physical health, mental and emotional health, and sexual health. The independent variable was time of follow-up, and the dependent variables were the responses to the OSA-Q. Data collection was completed, and statistical analyses were performed with the 1-sample Wilcoxon signed rank test with a median score of 3 (no change) to evaluate for significant changes in the categories. P Results A total of 27 of 51 eligible patients (53% response rate) responded to the questionnaire (15 men and 12 women). The average postoperative age was 59.1 ± 11.7 years, with an average follow-up period of 12.7 ± 3.8 years. Statistically significant long-term QOL improvements from MMA for OSA were found in overall QOL (mode, 4; P Conclusions MMA for OSA provided significant improvement in overall patient QOL as well as personal satisfaction, sleep quality, and functional outcomes at very long-term follow-up at an average of more than 12 years after surgery. MMA for OSA produces significant very long-term subjective QOL improvement.

An international update of the EORTC questionnaire for assessing quality of life in breast cancer patients: EORTC QLQ-BR45

The European Organization for Research and Treatment of Cancer (EORTC) QLQ-BR23 was one of the first disease-specific questionnaires developed in 1996 to assess quality of life (QoL) in patients with breast cancer (BC). However, since 1996 major changes in BC treatment have occurred, requiring an update of the EORTC BC module. This study presents the results of the phase I-III update of the QLQ-BR23 questionnaire. The update of the EORTC QLQ-BR23 module followed standard EORTC guidelines. A systematic literature review revealed 83 potential relevant QoL issues during phases I and II. After shortening the issues list and following interviews with patients and health care providers, 15 relevant issues were transformed into 27 items. The preliminary module was pretested in an international, multicentre phase III study to identify and solve potential problems with wording comprehensibility and acceptability of the items. Descriptive statistics are provided. Analyses were qualitative and quantitative. We provide a psychometric structure of the items. The phase I and II results indicated the need to supplement the original QLQ-BR23 with additional items related to newer therapeutic options. The phase III study recruited a total of 250 patients (from 12 countries). The final updated phase III module contains a total of 45 items: 23 items from the QLQ-BR23 and 22 new items. The new items contain two multi-item scales: a target symptom scale and a satisfaction scale. The target symptom scale can be divided into three subscales: endocrine therapy, endocrine sexual and skin/mucosa scale. Our work has led to the development of a new EORTC QLQ-BR45 module that provides a more accurate and comprehensive assessment of the impact of new and scalable treatments on patients' QoL. The final version of the EORTC QLQ-BR45 is currently available for use in clinical practice. The final phase IV study is underway to confirm psychometric properties of the module.