Importance For Quality Of Life Research Articles

Good architectural design as a catalyst for improving the quality of life in cities

The growth of cities has led to multiple transformations that have changed the urban fabric; for this reason, many locations in urban areas remain neglected. The present study was undertaken to search for solutions that would minimize adverse changes in the urban fabric, buildings, and urban spaces. The aim of the study was to present examples of good architectural design that can be considered catalysts that improve the quality of life in cities. Architectural design contributes to urban development not only at the level of individual buildings, but also at the level of the overall quality of urban life. The research methodology involved developing a theoretical framework for the research topic, and applying selected indicators to analyse several international examples and investigate the strategies deployed in various countries around the world. The study demonstrated that good architectural design must be inspired by a city’s history, and that the urban context should be considered in order to integrate new urban development with the surrounding environment through catalytic mechanisms and their indicators. Sustainability, health, education, safety, psychology, material sourcing, and building materials are the most important quality of life (QoL) factors for developing a good architectural project.

Brainstem–cortex disconnection in amyotrophic lateral sclerosis: bulbar impairment, genotype associations, asymptomatic changes and biomarker opportunities

BackgroundBulbar dysfunction is a cardinal feature of ALS with important quality of life and management implications. The objective of this study is the longitudinal evaluation of a large panel imaging metrics pertaining to bulbar dysfunction, encompassing cortical measures, structural and functional cortico-medullary connectivity indices and brainstem metrics.MethodsA standardised, multimodal imaging protocol was implemented with clinical and genetic profiling to systematically appraise the biomarker potential of specific metrics. A total of 198 patients with ALS and 108 healthy controls were included.ResultsLongitudinal analyses revealed progressive structural and functional disconnection between the motor cortex and the brainstem over time. Cortical thickness reduction was an early feature on cross-sectional analyses with limited further progression on longitudinal follow-up. Receiver operating characteristic analyses of the panel of MR metrics confirmed the discriminatory potential of bulbar imaging measures between patients and controls and area-under-the-curve values increased significantly on longitudinal follow-up. C9orf72 carriers exhibited lower brainstem volumes, lower cortico-medullary structural connectivity and faster cortical thinning. Sporadic patients without bulbar symptoms, already exhibit significant brainstem and cortico-medullary connectivity alterations.DiscussionOur results indicate that ALS is associated with multi-level integrity change from cortex to brainstem. The demonstration of significant corticobulbar alterations in patients without bulbar symptoms confirms considerable presymptomatic disease burden in sporadic ALS. The systematic assessment of radiological measures in a single-centre academic study helps to appraise the diagnostic and monitoring utility of specific measures for future clinical and clinical trial applications.

Early assessment of laryngeal dysfunction after thyroid surgery: a narrative review on detection and treatment considerations and the role of speech language pathology

Background and Objectives: Laryngeal function is an important quality of life (QOL) aspect after thyroid and parathyroid surgery that focuses on the functions of voice, swallow and breathing. These important functions may be altered secondary to nerve injury to the recurrent laryngeal nerve (RLN) and the superior laryngeal nerve (SLN), two branches of the vagus nerve, which traverse the surgical field during dissection. The dysfunction arising from injury to these branches can lead to a spectrum of voice, swallow and breathing disorders, that lead to increased morbidity for patients as well as poor QOL after surgery.

Immunological mechanisms of cognitive dysfunction under systemic therapy in metastatic melanoma

Neurocognitive impairments of memory, speech, and attention can occur in cancer patients as adirect result of the cancer but also in the context of therapy. With the development of modern immunotherapies and their use in combination with surgery and radiation therapy, the number of long-term survivors has significantly increased. As aresult, detrimental effects on brain function and structure in cancer patients not only during treatment but also after completion of therapy have become akey issue in clinical oncology. Early diagnosis and treatment of neurocognitive disorders is of great importance for quality of life, therapy adherence, and overall survival of the affected patients. In this review, we discuss the underlying mechanisms with aspecial focus on metastatic melanoma. Furthermore, practice-relevant diagnostics, prophylaxis, and intervention options are discussed.

THE IMPACT OF LIFE TRAUMA ON THE MENTAL HEALTH AND SUICIDAL BEHAVIOR: A STUDY FROM PORTUGUESE LANGUAGE COUNTRIES

Introduction: The word “trauma” is commonly used to refer to a stressful event, however, each person’s individual adaptability and coping capacity is what defines whether an event is traumatic for them. The psychological trauma resulting from a traumatic event compromise both the mental and physical health of the traumatized individual. Several studies report the incidence of traumatic experiences in community and clinical samples and in specific populations. Suicide is still a major global public health concern and globally more than 700,000 people die from suicide every year. There is substantial research regarding the impact that exposure to a traumatic event has on mental health and suicidal behavior in various study populations, but this area remains unexplored in the Community of Portuguese Language Countries (CPLC). Objective: This study aims to 1) describe the traumatic experiences, mental health levels and suicidal behavior, comparing differences between country of residence; 2) assess correlations between traumatic experiences and mental health and suicidal behavior; and 3) assess the impact of exposure to a traumatic event on mental health and suicidal behavior. Methods: The participants of this study are 1006 individuals from Portugal, Brazil, and African Countries with Portuguese as an Official Language (ACPOP). The measurement instruments included a sociodemographic questionnaire, Brief Symptoms Inventory-18 (BSI-18), Brief Trauma Questionnaire (BTQ), and the Portuguese version of Suicidal Behaviors Questionnaire-Revised (SBQ-R). Results: The results indicate that the rates of anxious, depressive, and somatic symptomatology are within the average range for a community population in Portugal. The ACPOP participants reported greater impact of war, while Portuguese participants reported greater impact of disasters and Brazilian participants reported greater impact of psychological and sexual abuse, assault, and death of a family member. Brazilian participants showed the worst levels of mental health and greater suicidal thoughts, but Portuguese participants showed greater probability of committing suicide. Although strong correlations were found between traumatic experiences and mental health levels and suicidal behavior, only physical and sexual abuse were positively correlated with all BSI-18 and SBQ-R subscales. A linear regression analysis revealed that traumatic experiences explain 23.4% of the variance in mental health levels and 11.6% of the variance in suicide probability. Conclusion: Mental health is of paramount importance for quality of life. Therefore, it is important to understand the risk factors for poor mental health outcomes including suicide risk, in this case exposure to traumatic events, for a direct and effective intervention and prevention. Our results elucidate and reinforce the impact of traumatic experiences on mental health and its role as a predictor of suicide attempts, contributing to a better understanding about these themes to assist future preventive or remedial intervention. Governments of Portuguese Language Countries should include strategies aimed at minimizing the impact of traumatic experiences when implementing mental health policies and prevention campaigns.

Quality of Life in Women after Deep Endometriosis Surgery: Comparison with Spanish Standardized Values.

The quality of life (QoL) of women who have been surgically treated for endometriosis may be severely impaired. Therefore, QoL can be a determining factor in the recovery of these patients. The aims of this study were to evaluate if the QoL of women surgically treated for deep endometriosis differs from a healthy age-matched population from Catalonia (Spain) and to analyze the QoL of these women considering concomitant events. This is an observational cross-sectional study, where 112 women (between 18 and 48 years old), with endometriosis treated by surgery at Hospital Universitario La Paz (Madrid, Spain), were enrolled to assess the QoL using the second version of the 12-item short form (SF-12) questionnaire. The QoL in these women were tested against a reference population of healthy women using a standardized one-sample comparison method. In addition, the QoL was compared according to the pathophysiology and type of surgery. In women with endometriosis, the physical health component, but not mental health component, was positively correlated with age (r = 0.19; p-Value = 0.048). In addition, physical (20.3 ± 29.2) and social functions (29.7 ± 38.3) and the overall physical health component (37.8 ± 19.4) were significantly lower than the reference population. On the contrary, the body pain (64.1 ± 41.2), emotional role (62.5 ± 42.2), mental health (54.4 ± 26.0), vitality (59.3 ± 31.2), and the overall mental health component (59.4 ± 26.6) had significantly higher scores than the reference. The anatomical compartment of endometriosis, reintervention, bowel nodule resection, and fertility preservation did not show statistical differences in QoL. Women with deep endometriosis had worse physical and social functions, and the overall physical health, compared to the norm in Spanish women. Bodily pain, emotional role, vitality, and the overall mental health improved. These areas could be considered protective factors in this disease. Considering the importance of QoL in adjustments in mental and physical health, it would be necessary to improve these areas of QoL in women surgically treated for deep endometriosis.

Home care provision and nursing home admission after myocardial infarction in relation to cardiogenic shock and out-of-hospital cardiac arrest status

Abstract Background Autonomy is of great importance for quality of life. There is a paucity of data on autonomy for those who survive myocardial infarction (MI) with and without cardiogenic shock (CS) and out-of-hospital arrest (OHCA). Purpose To examine the association between CS, OHCA, and need for home care provision or nursing home admission as a proxy for impaired autonomy in a first-time MI population. Methods Danish nationwide registries were used to identify patients with first-time MI (2009–2019), who prior to the event were living at home without home care and discharged alive. The patients were stratified according to CS and OHCA status. We report 1-year cumulative incidence of a composite outcome of home care provision or nursing home admission with competing risk of death and as a secondary outcome all-cause mortality. Cause specific Cox regression models were used to estimate adjusted hazard ratios (HR) with patients without CS or OHCA as reference. Results We identified 61,451 patients in the period with MI (by groups: −OHCA/−CS: 59,316, −OHCA/+CS: 1,597, +OHCA/−CS: 913, and +OHCA/+CS: 669). The 1-year cumulative incidences of home care/nursing home were 6.9% for patients with −OHCA/−CS, 21.1% for −OHCA/+CS, 5.2% for +OHCA/−CS, and 8.1% for those with +OHCA/+CS. With the −OHCA/−CS as reference, the adjusted HRs for home care/nursing home were 3.12 (95% CI: 2.78–3.49) for patients with −OHCA/+CS, 1.27 (95% CI: 0.95–1.70) for +OHCA/−CS, and 2.31 (95% CI: 1.76–3.03) for +OHCA/+CS (Figure). The 1-year cumulative incidences of mortality were 4.8% for patients with −OHCA/−CS, 10.0% for −OHCA/+CS, 2.8% for +OHCA/−CS, and 3.7% for those with +OHCA/+CS (adjusted HRs: 2.81 (95% CI: 2.55–3.10), 1.09 (95% CI: 0.85–1.39) and 1.81 (95% CI: 1.42–2.30) (Figure 1). Conclusion In a selected cohort of patients with MI, without previous need for home care/nursing home and surviving until discharge date, patients with CS were independent of OHCA status associated with less autonomy after discharge with a more than two-fold higher 1-year incidence of home care provision or nursing home admission. Further, patients with CS were associated with a two-fold higher 1-year mortality compared with MI patients without CS independent of OHCA status. Funding Acknowledgement Type of funding sources: Public hospital(s). Main funding source(s): The work was supported by Rigshospitalets Research Foundation, Master cabinetmaker Sophus Jacobsen and Wife Astrid Jacobsen Foundation, and Director Jacob Madsen and Wife Olga Madsens Foundation. The funding source had no role in the design, conduct, analysis, or reporting of the study.

What are predictors of impaired quality of life in patients with hypoparathyroidism?

Hypoparathyroidism (hypoPT) is a rare endocrine disorder. Little is known about what factors are associated with potential quality of life (QOL) impairments. HypoPT patients at a minimum of 6 months' post diagnosis were invited to participate in an online survey through their treating physician or through self-help organisations METHODS: Impairments of clinical importance in QOL were considered present if the score of the respective functioning scale of the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 exceeded a pre-defined threshold. Symptom burden was assessed using the HPQ-28. Multivariate logistic regression was used to identify factors associated with impairments in QOL. Data were available for 264 hypoPT patients. Impairments of clinical importance in QOL were reported for 40.4% in role functioning (RF), 40.6% in social functioning (SF), 60.8% in physical functioning (PF), 65.5% in cognitive functioning (CF) and 76.0% in emotional functioning (EF). Higher odds for reporting impaired QOL were seen for higher symptom burden (for almost all domains) and for being unable to work (for PF, RF and SF). Surgery for thyroid cancer being the cause of hypoPT was associated with lower odds in PF for patients and in PF and CF for patients with surgery for other thyroid-related diseases being the hypoPT cause. HypoPT needs to be recognised as a disease which might be associated with impaired QOL and affect daily living. Symptom management is crucial for improving QOL in hypoPT patients but socioeconomic factors like work-ability need to be considered when treating hypoPT patients.

Abstract P4-12-03: Assessment of quality of life (QoL) in patients with metastatic breast cancer (MBC) in clinical practice: A real-world multi-country survey

Abstract Background: Patient (pt) QoL is a key factor in the treatment (tx) of ABC. There are gaps in real-world evidence of how QoL is assessed in clinical practice. We examined the importance of QoL, its influence on tx decisions, and how it is discussed in a clinical setting from pts’ and healthcare professionals’ (HCPs) perspectives. Methods: The survey was designed by a steering committee of medical oncologists and patients and ethically approved to survey HCPs and patients. Data were collected from July 2020 to May 2021 via a cross-sectional online survey of HCPs (oncologists [Onc] and oncology nurses [OncNu]) and pts with HR+/HER2- ABC in Australia, Brazil, Egypt, Germany, Italy, South Korea, and USA. HCPs were recruited via a 3rd party and surveyed on the management of ABC including the importance of QoL and its assessment in clinical practice. Pts were recruited via HCPs and advocacy groups and surveyed on the importance of QoL, how tx impacts QoL, daily activities, and work, and the frequency of QoL discussions with HCPs. All observations were assessed using a 4-point Likert scale; data were analysed descriptively. Results: 277 Onc, 225 OncNu, and 467 pts with ABC took part in the survey. 221 pts had stage III advanced (locoregionally recurrent not amenable to curative therapy) and 229 had stage IV metastatic disease. 142 pts were receiving first line (1L), 116 second line (2L), and 209 third or later line (3L+) tx. Most HCPs, 88% of Onc and 96% of OncNu, reported asking about QoL at follow-up appointments, where fewer pts report being asked about QoL by Onc (64%) and OncNu (43%). Pts at later line of therapy (LoT) less frequently reported QoL discussions with Onc; 43% of pts at 1L (n=140) reported they were always asked about QoL at follow-up appointments vs 21% at 2L (n=113) and 16% at 3L+ (n=206). Among Onc, importance of QoL for tx decisions increased with LoT; 48% reported that QoL was very important at 1L, 57% at 2L, 79% at 3L, and 85% at 4th line. In contrast, importance of QoL among pts decreased with LoT; while only 39% were comfortable discussing QoL with Onc, 73% at 1L agreed that QoL was important vs 45% at 2L and 40% at 3L+. Among pts who experienced a side effect (SE) that was not discussed with their HCP (n=96), 40% agreed this was because HCPs did not ask about it, and 28% at least moderately agreed they do not report SE as they do not want their Onc to change their tx. 81% of HCPs did not completely agree with the statement “I have enough time to discuss QoL with my pts”. Among those who reported asking pts about their QoL, 93% of HCPs (n=481) reported using questions of their own, while 11% of Onc and 30% of OncNu reported using QoL questionnaires. Only 11% of HCPs agreed that available QoL tools were specific enough to customise for their pts, and only 12% agreed they had access to QoL tools that were integrated with electronic health record systems. Among HCPs (n=341) who were familiar with QoL tools used in clinical trials for ABC, only 10% agreed that these tools were able to accurately reflect QoL, and only 11% agreed that the tools were able to capture improvements in QoL when tx delayed disease progression. Conclusion: We found disconnects between pts with ABC and HCPs around the importance of discussions around QoL; pts report a lower frequency of these discussions in later LoT than HCPs. QoL assessment tools were infrequently used by HCPs, as those currently available were not considered adequate for ABC. QoL should be formally assessed regularly using an ABC-specific QoL assessment tool. This would allow HCPs to address pt issues around QoL through focused discussions to help inform tx decisions. To ensure clinical value, a tool should be quick and easy to use, be able to be completed outside of an appointment setting, yield results that are easy to interpret and compare, and be integrated into medical records. Citation Format: Fatima Cardoso, Julie Rihani, Dawn Aubel, Adam Moore, Victoria Harmer, Nadia Harbeck, Ana Casas, Sina Haftchenary, Purnima Pathak, Eva Schumacher-Wulf. Assessment of quality of life (QoL) in patients with metastatic breast cancer (MBC) in clinical practice: A real-world multi-country survey [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P4-12-03.

HEALTH RELATED QUALITY OF LIFE OF THE PATIENT WITH IMMUNOGLOBULIN G4-RELATED CRANIAL HYPERTROPHIC PACHYMENINGITIS (IGG-HP) CAUSING DISTURBANCES OF COGNITIVE CONTROL TREATED WITH NEUROFEEDBACK

Health related quality of life (HRQoL) is the most desired patient centered outcome of medical care (Leplége et al. 1997). In patients with long term illness, such as Hypertrophic Pachymeningitis (HP) still under diagnosis, therefore no possible to properly cure, it might be the only outcome achievable (Netuveli et al. 2005; Trystuła 2017). The problem becomes even more serious when occurs in young person: starting a family and caring for children becomes hard or even impossible, because of his/her physical and psychical conditions. Most clinicians are aware of the importance for quality of life of this functional limitation, but there are no articles describing this problem in the literature. We aimed to fill this gap in knowledge. 29 year old patient, a car mechanic, married, with 4-year-old son, with the long his- tory of the illnes, and especially persistent, diffuse, non-specific headaches, frequent seizures and cognitive deterioration which have been particularly troublesome recently. He was finalny diagnosed with Hypertrophic Pachymeningitis (HP) associated with Immunoglobulin G4-related (IgG4) with the use of specific diagnostic criteria for HP associated with IgG4-RD (IgG4-HP), which rely on histopathologic analysis (Lindstrom et al. 2010; Lu et al 2014). Computed tomography (CT) of the head showed massive calcifications visible along the cerebellar tentorium on the right side, along the cerebral falx, as well as on dura mater on the cranial vault of both cerebral hemispheres. The patient was diagnosed with common variable immunodeficiency (D 83), thrombocytopenia, chronic EBV hepatitis and epilepsy. IgG4-HP was confirmed by CT, MRI and biopsy (IGg4-RHP antibody was detected). The treatment with steroids, and immunosuppressive therapy (RTX) was introduced (as it was suggested by Levraut et al. (2019). It should be stressed that he had a significantly reduced health-related quality of life (HRQoL), mainly because of long-lasting illness, diverse symptoms, often hospitalization, complex differential diagnosis, and especially biopsy which requires neurosurgical intervention, which affect his physical and mental well-being, especially cognitive control, and not possibility to take care of his family. To help the patient we introduce HBI methodology (Kropotov 2016), that is an evaluation of working brain in milliseconds. Quantitative electroencephalography (qEEG), event-related potentials (ERPs) and low-resolution sLORETA tomography were performed. We did not found any paroxysm of 3 Hz rhythm in Eyes Closed (EO) and in Eyes Open (EO) conditions, however the ERPs deviations from the reference indicate deficit of cognitive control (decrease of P3 NOGO wave in comparison to 100 persons from the normative data base from the Human Brain Index in Chur, Switzerland). Therefore, the patient was offered Transcranial Direct Current Stimulation (atDCS) combined with goal-oriented psychotherapy program. It was found that after 40 days of therapy, cognitive control returned, which was translated into a better quality of life related to the patient's health, measure in the 36-Item Short Form Survey (SF-36). The patient returned to his previous job as a head of car mechanic service. Final diagnosis of IgG4-HP and subsequently, proper farmacotherapy, and introduction of HBI methodology allowing for the selection of an adequate method of neurotherapy, for our patient the transcranial direct current stimulation (atDCS) combined with goal- oriented psychotherapy, was helpful in the improvement of his quality of life.

PERSON CENTERED MEDICINE, WELL-BEING AND QUALITY OF LIFE

Background: Person Centered Medicine places the person at the center of the
 concept of health and as the proper target of health actions. This makes positive
 health, including wellbeing and quality of life, a matter of high interest among the
 concepts, procedures and activities of person centered medicine and health.
 Objectives: This paper is aimed at exploring, documenting and discussing the
 concepts and procedures for positive health, particularly well-being and quality of
 life, within the framework of person centered medicine and health.
 Method: For addressing these objectives, first, a selective review of the literature
 was conducted concerning the place of positive health within the recognized
 concepts and practical procedures of the programmatic movement on Person
 Centered Medicine. Then, a more systematic review of the medical and health
 literature was conducted on concepts and procedures for addressing and assessing
 well-being and quality of life within the framework of person centered medicine.
 Results: Findings concerning positive health developments (particularly involving
 well-being and quality of life) produced under the aegis of the International
 College of Person Centered Medicine included, first, its place in the systematic
 conceptualization of person centered medicine, where it is part and parcel of the
 principles on ethics commitment and holistic framework, as well as the principlesbased
 Person-centered Care Index (PCI). Second, positive health is a distinctive
 and prominent element of the informational domains of the Person-centered
 Integrative Diagnosis (PID) model, as well as in practical applications such as the
 Latin American Guide for Psychiatric Diagnosis developed and published by the
 Psychiatric Association of Latin America (APAL). A second set of findings
 emerged from a systematic review of the literature on “Person centered medicine,
 well-being and quality of life”. It yielded 27 papers, dealing with theoretical
 concepts and instrumentation, which were tabularly analyzed. The concepts of
 well-being (WB) and quality of life (QoL) tended to be used interchangeably as
 well as complementarily, with QoL tending to be seen as more encompassing and
 often incorporating WB. Some major well-being studies have used a group of
 instruments to cover key aspects of WB. Several encompassing instruments for
 the assessment of QoL and WB were identified, having a range of features and
 applications. Among the most frequently used seem to be the WHO-instrument
 for Quality of Life and the Multicultural Quality of Life Index.
 Discussion: The importance ascribed to positive health is growing internationally,
 with particular focus on WB and QoL. This is illustrated by the United Nations’
 Sustainable Development Goals, which formulates its Goal on Health in terms of
 promoting healthy lives and well-being for all.
 Conclusions: The importance of QoL and WB in the health field in general and
 in particular for person-centered medicine has been well documented. Some
 useful and encompassing instruments for assessing these concepts have been
 elucidated, which have general applicability and are substantially validated
 internationally.

Avaliação da sexualidade de pacientes com câncer do colo do útero em Sergipe

Objetivo: Analisar os impactos do câncer de colo de útero na sexualidade das mulheres, ressaltando a importância desta para a qualidade de vida. Métodos: Trata-se de um estudo epidemiológico, descritivo e analítico, com coleta de dados de caráter transversal. Foram realizadas 80 entrevistas no ambulatório de oncologia do Hospital de Urgência de Sergipe em mulheres com câncer de colo de útero em tratamento ou já tratadas, utilizando-se dois questionários. O primeiro abordou aspectos socioeconômicos e demográficos. O segundo, o Quociente Sexual versão Feminina (QS-F). Os dados foram analisados por estatística descritiva com auxílio do software Epi-Info versão 7.0. Por se tratar de pesquisa com seres humanos, o trabalho foi submetido e aprovado pelo Comitê de Ética em Pesquisa. Resultados: A média de idade foi 46,8 anos (±13,2). A escolaridade apresentou-se com prevalência de indivíduos com nível médio completo 25% (n=20). Quanto ao estado civil, nível sócio econômico e profissão, 36,3% (n=29) declararam-se casadas, 51,2% (n=41) do estrato social de classe média e 33, 8 (n=27) exerciam atividade de “do lar”. O QS-F apresentou média geral de 45,5 pontos (±23,9), variando de 10 a 84 pontos. Adotada a classificação estratificada, observou-se que boa parte das mulheres, 85% (n=68), foram classificadas como regular ou inferior. Foi evidenciado diferença estatisticamente significante entre os estratos do QS-F e o nível socioeconômico. Conclusão: O presente trabalho corrobora com a literatura utilizada em vários âmbitos, uma vez que a maioria das mulheres questionadas mostrou função sexual baixa e insatisfatória de acordo com o QS-F.

IDH-Mutant Low-grade Glioma: Advances in Molecular Diagnosis, Management, and Future Directions.

IDH-mutant low-grade gliomas (LGG) have emerged as a distinct clinical and molecular entity with unique treatment considerations. Here, we review updates in IDH-mutant LGG diagnosis and classification, imaging biomarkers, therapies, and neurocognitive and patient-reported outcomes. CDKN2A/B homozygous deletion in IDH-mutant astrocytoma is associated with shorter survival, similar to WHO grade 4. The T2-FLAIR mismatch, a highly specific but insensitive sign, is diagnostic of IDH-mutant astrocytoma. Maximal safe resection is currently indicated in all LGG cases. Radiotherapy with subsequent PCV (procarbazine, lomustine, vincristine) provides longer overall survival compared to radiotherapy alone. Temozolomide in place of PCV is reasonable, but high-level evidence is still lacking. LGG adjuvant treatment has important quality of life and neurocognitive side effects that should be considered. Although incurable, IDH-mutant LGG have a favorable survival compared to IDH-WT glioma. Recent advances in molecular-based classification, imaging, and targeted therapies will hopefully improve survival and quality of life.

Associated factors with the quality of life of adolescents with type 1 diabetes.

The impact of Type 1 diabetes on adolescence can have consequences on the quality of life (QoL), which can affect its growth, development and management of the disease. Thus, the objective of this study was to evaluate the QoL related to the health of adolescents with type 1 diabetes and if socioeconomic, demographic, clinical and anthropometric factors can be associated with it. Cross-sectional study with adolescents with Type 1 diabetes mellitus (T1DM) of both sexes and between 10 and 18 years old. QoL was assessed by the Quality of Life Instrument for Young Diabetics (total score and its dimensions - Satisfaction, Impact and Concerns) and socioeconomic and demographic, clinical and anthropometric data were evaluated. Among 53 adolescents with T1DM, more than 13% of adolescents rated QoL as poor. The worst QoL in the Satisfaction dimension was associated with overweight, assessed by the body mass index; the increased cardiometabolic risk, assessed by waist circumference; the adolescent's later age at diagnosis (11-17 years); and the adolescent's older age (15-18 years). The worst QoL assessed in the Impact dimension was associated with the female sex. The Concerns dimension and the Total QoL score were not associated with socioeconomic and demographic, clinical, and anthropometric variables. We conclude that the QoL Satisfaction dimension of adolescents with T1DM is associated with their age, age at diagnosis, overweight and increased waist circumference, while the Impact dimension is associated with sex, and the Concerns dimension and the Total QoL score were not associated with the factors studied. Knowing the importance of QoL and its related factors, it is necessary to propose health activities and strategies for the all-around improvement of these patients.

Measuring quality of life in life-threatening illness \u2013 content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers

BackgroundThe McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers.MethodsThe study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care.ResultsPatients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings.ConclusionsThe results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.

Trends in Reporting of Swallowing Outcomes in Oropharyngeal Cancer Studies: A Systematic Review.

Over the last two decades, dysphagia is increasingly recognized as a significant short-term and long-term issue in oropharyngeal cancer patients. However, there remains a lack of standardization and agreement about reporting swallowing outcomes in studies that assess treatment outcomes in this population. A systematic review was performed following PRISMA Guidelines by searching Pubmed (MEDLINE) and Scopus. The inclusion criteria used included (1) prospective and retrospective clinical studies involving adult patients with oropharyngeal cancer, (2) reports swallowing outcomes, (3) English studies or studies with English translation, (4) full text retrievable and (5) publication between 1990 and 2016. 410 unique studies were identified, and 106 were analyzed. A majority (> 80%) of studies that reported swallowing outcomes were published after 2010. While 75.4% of studies reported subjective outcomes (e.g., patient-reported or clinician-reported outcome measures), only 30.2% of studies presented results of objective instrumental assessment of swallowing. The majority (61%) of studies reported short-term swallowing outcomes at 1year or less, and only 10% of studies examined 5-year swallowing comes. One study examined late-dysphagia (> 10years) in the oropharyngeal cancer population. Considerable heterogeneity remains in the reporting of swallowing outcomes after treatment of oropharyngeal cancer despite its importance for quality of life. Studies reporting long-term swallowing outcomes are lacking in the literature, and objective measures of swallowing function remain underutilized and nonstandardized.

THE IMPACT OF NOISE POLLUTION PHENOMENON IN THE CITIES OF BRAZZAVILLE AND POINTE-NOIRE IN THE REPUBLIC OF CONGO

The noise constitutes for the human beings with notched joints the world one of the nuisances most strongly felt. Apart from its importance for quality of life, the noise has also repercussions proven on health. Many countries strive to set up laws going with a view to fight against these nuisances which constitute an obstacle, an obstruction with quietude, the peace and the freedom of the populations. Congo Brazzaville is one of the countries of the world affected considerably by this phenomenon. Thus, this document treats primarily the causes and the consequences of the noises with Congo Brazzaville. This article Works out also some strategies which could contribute right now to fight against this phenomenon.

Content Validation of the Sickle Cell Pain Diary-Self Report

Background:Sickle Cell Disease (SCD) is a genetic, progressive, vascular disease that affects approximately 100,000 children and adults in the US. Vaso-occlusive crises (VOCs), also referred to as pain crises, are a primary complication of SCD. VOCs are thought to be caused by several factors, including inflamed, damaged vasculature and increased cellular adherence to the endothelium and other cells, resulting in occlusion of the microvascular system. VOCs have been associated with increased morbidity and mortality.Healthcare visit data partially reflect VOC and SCD outcomes and provide an understanding of healthcare resource utilization (HCRU). However, evaluating only HCRU data misses the breadth and depth of the patient experience and burden of SCD as it fails to capture daily variations of pain and other important quality of life (QoL) concepts. Additionally, patients who avoid seeking care outside the home are not represented in HCRU data.The Sickle Cell Pain Diary- Self Report (SCPD-S) was developed as a daily patient-reported outcome (PRO) measure primarily intended to capture the frequency and severity of SCD-related pain during and outside of a VOC and secondarily to examine the impact of the pain on other patient-relevant QoL concepts. The objective of this study was to investigate the content validity of the SCPD-S.Methods:A draft diary was developed from the literature. In line with FDA guidance for PRO development, the content validation of the SCPD-S included four consecutive steps: (1) literature review to identify important concepts to measure and mapping of concepts to draft diary; (2) expert review to improve wording and layout; (3) round 1 (N=13) of qualitative interviews with patients; and (4) round 2 (N=6) of qualitative interviews with patients. Revisions made to the diary after each step were tested in the following step.In total, 18 in-depth, hybrid concept elicitation (CE) and cognitive debriefing (CD) interviews were conducted in English in person (n=13) and by phone (n=5) with SCD patients in the US aged ≥12 years. A semi-structured guide was used to explore concepts relevant to patients' experience with VOCs and to test the draft diary. The CD portion of the interviews required patients to state their thoughts while reading the diary aloud, after which interviewers probed on areas that seemed confusing and asked questions specific to the diary instructions, recall period, items, and response choices. All interviews were recorded, transcribed, coded and analyzed.Results:All four steps of this content validation study resulted in changes to the SCPD-S. The literature review, expert review, and round 1 patient interviews resulted in expansion of the SCPD-S from 8 to 19 items covering concepts highlighted by patients as important. For example, impact of VOCs on school/work, activities of daily living, social and recreational activities, sleep, and emotional wellbeing were added. Five items from the original diary were significantly revised, as were all response choices. Round 2 interviews confirmed the comprehensiveness of the revised diary, comprehensibility of the wording, and appropriateness of the recall period and response choices. Final changes to the diary included adding skip logic to ensure transition to an electronic format. Saturation analyses revealed that no additional interviews were needed.Conclusions:This study provided evidence that supports the content validity of the SCPD-S, a self-report SCD daily diary focused on capturing daily variations of pain in SCD. Evidence gathered during patient interviews indicated that the SCPD-S is a valuable, fit for purpose measure of VOC-related pain frequency and severity as well as the impact of this pain on other QoL concepts including fatigue and emotional health. In addition, the diary captures the QoL of patients who may not seek care outside the home providing a more holistic view of the overall impact of VOCs and SCD. The numerous changes to the SCPD-S as a result of the study findings highlight the importance of the content validation process in establishing a PRO measure. Future work on the SCPD-S includes development of a scoring algorithm and user's manual, and conducting psychometric validation. Use of the SCPD-S is anticipated in future clinical trials enrolling patients who experience VOCs as a way to help capture the QoL impacts of new interventions designed to reduce the frequency and intensity of VOCs. DisclosuresBailey:Novartis: Employment. Stebbins:Optum: Employment; Novartis: Research Funding. D'Alessio:Novartis: Employment. Raymond:Novartis: Research Funding; Optum: Employment. White:Akcea: Research Funding; Optum: Employment.

CN16 - Introducing cancer nurse led consultations to improve sexuality & fertility outcomes for adolescents and young adults (AYAs) with an hematological disease

Background: With improving survival rates among AYAs with cancer, sexuality and fertility are important quality of life (QoL) concerns before, during and after treatment. Healthcare providers aren’t always knowledgeable about infertility risks associated with prescribed therapies. Cancer nurses are often the first professionals to identify and address sexuality concerns. Different barriers are the reason of not addressing sexuality concerns and fertility preservation options prior treatment. It is crucial that AYAs are well informed prior treatment to support them in their decision-making about fertility preservation options. Methods: An Interdisciplinary team developed an evidence-based care pathway for Hodgkin's disease. Healthcare providers from different staffs shared knowledge, expertise and skills to have positive impact on young patients survivorship outcomes. Standard infertility counselling was included prior to treatment for AYAs and a nurse led consultation prior therapy gives the opportunity to discuss important topics such as sexuality. Results: Implementation a care pathway increased the awareness about discussing sexuality and fertility preservation options among all healthcare providers within the haematology department. Collaboration between fertility specialists, physicians and cancer nurses will improve reproductive outcomes in AYA cancer care. Systematic feedback after fertility preservation procedures is helping to reduce reproductive concerns. Discussing sexuality during a nurse led consultation results in a better understanding of the effects of the disease and treatment and will improve QoL. Conclusions: Cancer nurses have a key role in discussing sexual concerns. A cancer nurse led consultation through the whole treatment process allows patients the opportunity to discuss sexual issues and concerns. Knowing that they can have their questions answered, makes them feel more confident and comfortable during treatment. Multidisciplinary care pathways are needed to establish systems to ensure that fertility is adequately addressed and comprehensive fertility counselling is offered to all AYAs prior to therapy and during survivorship. Legal entity responsible for the study: University Hospital Ghent. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.

PMU51 - The Identification of Patient-Centric Value Drivers for Self-Paid Treatments in Asia

To assess patients' aspirations during their treatment journey in Asia, which will support the identification of value drivers that resonate with patients and drive their choice of treatment and willingness to pay A high level meta-analysis was conducted across relevant studies (n=6) undertaken by GfK since July 2016 involving the assessment of patient journeys of those affected by oncology, immunology and neuromuscular conditions in Singapore, Taiwan, China, Hong Kong and Japan. Primary focus was to assess drivers for treatment initiation and continuation. The studies involved secondary and primary research on patients’ aspirations from the perspective of patients, physicians, nurses and caregivers. MaxDiff analysis was employed to confirm the ranking of value drivers. The analysis identified many commonalities in patient aspirations across the different therapeutic areas. Compared to patients that are taking reimbursed therapies, those who are paying out-of-pocket costs for medications are more involved in treatment decision making. For those who suffer from oncology and neuromuscular conditions, prolonging life is not as attractive if they cannot have good quality of life (QoL). Immunology patients see similar importance in QoL and consider being able to resume their daily routine the greatest driver for treatment choice. There are also subtle value driver differences between treatment initiation and continuation – cost can be a key barrier for initiation but it rarely causes discontinuation whereas safety/ tolerability issues are the opposite. Moreover, caregivers have better understanding of patient value drivers compared to physicians or nurses. Shared decision making in medicine has become more common in Asia and clear communication on QoL benefits are important to drive patient-focused treatment decisions and willingness to pay for self-pay treatment. However, there is evidence of an understanding gap, and a consequent need to improve patient-physician communication.