Quality Of Life In Several Domains Research Articles

Comparison of Protein Energy Wasting Assessment on Quality of Life Regular Hemodialysis Patients

Background. Protein energy wasting (PEW) is one of several markers of the quality of hemodialysis (HD) services in Indonesia, however not many studies conducted PEW assessement with quality of life (QoL) domain of regular HD patients. Aim: To determine comparison of PEW assessment with QoL domains in regular HD patients. Method: A Cross-sectional study with total sampling of 105 regular HD patients at Sanjiwani Gianyar General Hospital, on June to July 2022, The PEW assessments: body mass index (BMI), serum albumin, subjective global assessment (SGA), malnutrition inflammation score (MIS), and the International Society of Renal Nutrition and Malnutrition (ISRNM) with QoL domains by KDQOL-SF (Kidney Disease Quality of Life Short Form). Results. Most of the subjects were men (54.2%), the mean age was51.66 years and mean duration of HD was 50.28 months. The mean of BMI, serum creatinine, and serum albumin were 23.46 kg/m2, 9.70 mg/dL, and 3.86 mg/dL respectively, and median MIS 5. This study obtained significant correlation of BMI and QoL domains: work status, physical functioning, role of physics, energy/fatigue, and SF 12 physical composite. The MIS also significantly correlated with emotional well-being, sleep, and burden of disease. And ISRNM significantly correlated with energy/fatigue, and sexual function, On logistic regression analysis, this study obtained that albumin was significantly related to general health, emotional well-being, and energy/fatigue, Conclusion: Assessment of PEW (BMI, serum albumin, MIS, SGA, and ISRNM ) were related to several domains of QoL.

Treatment with liraglutide or naltrexone-bupropion in patients with genetic obesity: a real-world study

Rare genetic obesity commonly features early-onset obesity, hyperphagia, and therapy-resistance to lifestyle interventions. Pharmacotherapy is often required to treat hyperphagia and induce weight loss. We describe clinical outcomes of glucagon-like peptide-1 analogue liraglutide or naltrexone-bupropion treatment in adults with molecularly confirmed genetic obesity (MCGO) or highly suspected for genetic obesity without definite diagnosis (HSGO). We conducted a real-world cohort study at the Obesity Center CGG at Erasmus University Center, Rotterdam, Netherlands, between March 19, 2019, and August 14, 2023. All patients with MCGO and HSGO who were treated with either liraglutide or naltrexone-bupropion were included. Liraglutide 3mg and naltrexone-bupropion were administered according to the manufacturer's protocol. Treatment evaluation occurred short-term, after 12 weeks on maximum or highest-tolerated dose, preceded by the 4-5 week dose escalation phase. Differences in anthropometrics, body composition, metabolic markers, self-reported appetite, eating behaviour, and quality of life (QoL) were evaluated. Ninety-eight adults were included in the analysis: 23 patients with MCGO and 75 patients with HSGO, with median BMI of 42.0kg/m2 (IQR 38.7-48.2) and 43.7kg/m2 (IQR 38.0-48.7), respectively. After liraglutide treatment, median weight at evaluation significantly decreased compared to baseline in both groups:-4.7% (IQR-6.0 to-1.5) in patients with MCGO and-5.2% (IQR-8.1 to-3.5) in patients with HSGO. Additionally, improvements were observed in appetite, fat mass, fasting glucose, and HbA1c in both patients with MCGO and with HSGO. Patients with HSGO also reported significant improvements in several domains of QoL and eating behaviour. In patients with MCGO and HSGO treated with naltrexone-bupropion, mean weight at evaluation significantly differed from baseline:-5.2%±5.8 in patients with MCGO and-4.4%±4.7 in patients with HSGO. Appetite, fat mass, and waist circumference significantly decreased in both groups. Obesity-related comorbidities improved in significant proportions of patients treated with liraglutide or naltrexone-bupropion. In conclusion, our short-term findings show potential of liraglutide and naltrexone-bupropion as treatment options for adults with (a clinical phenotype of) genetic obesity. MB, EvdA, and EvR are supported by the Elisabeth Foundation, a non-profit foundation supporting academic obesity research.

Evaluating the Effectiveness of Geriatric-Specific Cancer Rehabilitation Programs on Patient Health Outcomes.

This study evaluated a specialized rehabilitation program's impact on senior cancer patients' quality of life. one hundred and thirty patients aged ≥65 years with various cancer types undergoing/recovering from treatment were enrolled in oncology clinics in Al-Ahsa, Saudi Arabia. The intervention arm (n=65) participated in a tailored geriatric cancer rehabilitation program. The control group (n=65) received standard oncology care. The Functional Assessment of Cancer Therapy-General (FACT-G) tool assessed the quality of life across physical, social, emotional, and functional domains. T-tests and multivariate regression analyses compared outcomes. Total FACT-G scores showed a significantly higher quality of life for the geriatric cancer rehabilitation group versus standard care. Rehabilitation patients also demonstrated meaningful improvements across physical, social, and functional subscales. Rehabilitation involvement was the most predictive factor for optimized outcomes. Specialized geriatric cancer rehabilitation meaningfully improved several quality of life domains in older patients over standard care. Despite persistent barriers, rehabilitation programming optimized older cancer patients' physical and psychosocial health. Oncology and geriatrics must collaborate to ensure evidence-based rehabilitation access meets older cohorts' unique needs.

Quality of life and testosterone recovery after androgen deprivation therapy in patients with high-risk prostate cancer: Long-term data from a phase III trial.

11098 Background: No prospectively collected data exist assessing the impact a hypogonadal status has on quality of life (QoL). Using data from a randomized Phase III trial in high-risk prostate cancer (HRPC) and based on Patient Reported Outcomes (PRO), we compared QoL between patients (pts) with or without testosterone (T) recovery after ADT. Methods: From 10/2000 to 01/2008, 630 pts with HRPC were randomised to 36 (310 pts) vs. 18 months (320 pts) of ADT. We assessed QoL by the validated EORTC 30 items regrouped into 9 scales and the PR 25 items into 5 scales. All items and scales scores were linearly transformed to a 0 to100 points scale. T measured at baseline and during follow-ups. T recovery was defined as a return to normal level. PRO measured up to 5 years. We estimated means and standard deviation of items and scales for each group at each time point. We analyzed all items and scales scores with general linear model with repeated measures to evaluate changes between patients who did versus those who did not recover T to a normal level, over time, in both ADT groups. P-value <0.01 was considered statistically significant to account for multiple comparisons and a difference in mean scores of ≥10 points was considered clinically relevant. Results: 494/630 patients were retained for the analysis. 515 had proper T data available (baseline and follow-up) from whom 21 were excluded (no QoL data). With a median follow-up of 13.1 years, the two groups were well-balanced. Over a period of 21 years, 5 982 T measurements were available: 3590 in 314 pts in the and 2392 in the 18- and 36-month cohort, respectively. A total of 256 (51.8%) recovered T to, at least, a pre-castrate level. A significantly higher percentage of pts recovered a normal T level in the 18-month cohort as compared to the 36-month (56.4% vs. 43.9%, p=0.008). Among pts regaining T to a normal level, the median time to recovery was significantly faster for the 18 compared to the 36-month cohort, 3.0 (95% CI: 2.55 to 3.65) vs. 5.00 (4.50 to 5.96) years, p<0.001. Considering the unified 55 items, overall adherence to QoL questionnaires (QoLQ) was 83.1% (4554/5480), 88.2% vs. 93.3% at baseline and 61.5% vs 58.3% at 5 years, for 18 vs. 36-month, respectively. Patients recovering T had a significantly better QoL. In 32 out of 55 items and in 10 out of 21 scales (p<0.01) in the 18-month and 30 out of 55 items and 10 out of 21 scales the 36-month cohort. Also 9 items and one scale reached clinical relevance in the 18-month cohort and 10 items and one scale in the 36-month cohort. Conclusions: In HRPC treated with RT and long-term ADT, T recovery to normal level is associated with major improvements in QoL in several domains. Since a higher proportion of pts recover a normal T level in a much shorter time without apparent detriment in long term outcomes, our results suggest that 18-month may be the most appropriate ADT duration for these pts.

The personal impact of living with a myeloproliferative neoplasm.

The aim of this study is to gain insight into the physical, psychological and social impact of having a myeloproliferative neoplasm (MPN), a rare type of cancer with an often chronic course. An online survey was conducted among 455 Dutch MPN patients (62.7% female, age M 63) to explore the impact of the disease by measuring the MPN symptom burden (MPN-SAF TSS) and quality of life (QoL) (EORTC QLQ-C30) and its subscales within a hierarchical QoL model. We examined differences in MPN symptom burden and QoL in relation to sociodemographic and disease-related factors. Hierarchical regression analysis was used to explain variances in QoL. Most patients (97%) experienced MPN-related health complaints, with a significantly higher MPN symptom burden in women (M 31.50) compared to men (M 24.10). Regarding to fatigue and cognitive functioning MPN patients suffered more compared to a reference group of other cancers. MPN subtype or type of treatment did not show significant differences in MPN symptom burden or QoL. However, experiencing side effects, complications or comorbidities significantly negatively affected MPN symptom burden and QoL. 48.8% of patients reported that MPN affected their ability to work. The explained variance in overall QoL was 58%, most importantly by disease progression, comorbidities, MPN symptom burden and role, emotional and social functioning. This study revealed that having an MPN has a negative impact on several domains of QoL. Symptom assessment and support should be included in the healthcare management of MPN patients.

Health-Related Quality of Life Analysis in Patients with Non-Functioning Pituitary Macroadenomas Treated with Transsphenoidal Surgery with or without Radiation Therapy

The quality of life (QoL) impact of multidisciplinary treatment for patients with nonfunctioning pituitary macroadenomas (NFPMA) is unclear. We sought to assess patient-reported QoL in our institutional experience using a cross-sectional survey. We identified 488 patients with NFPMA treated at our institution from 1980-2010 who underwent transsphenoidal surgery (TSS) with or without adjuvant salvage therapy with radiation therapy (RT) and/or surgery. The following validated patient-reported outcome measures were collected: the RAND Short Form-36 Health Survey (SF-36), the Multidimensional Fatigue Inventory (MFI-20), and the Cognitive Failures Questionnaire (CFQ). Clinical characteristics of patients who did and did not receive RT were compared using Wilcoxon rank-sum test or Fisher's exact test. We used multivariable linear regression and reported mean score differences between comparison groups. The response rate to survey invitation was 47% (229 patients). Median age at the time of initial TSS was 55 years (18-85 years). 35% of patients were female. 25% of participants received RT a median of 2.0 years (0.1-22.5) after initial TSS, and 15% of patients had >1 additional surgery after initial TSS. The patients who received RT were younger (median age 46 v 58, p < 0.0001), had larger tumors (28 mm v 22 mm, p < 0.0001) and were more likely to have visual symptoms (65% v 34%, p = 0.0002 and were more likely to have hypopituitarism (93% v 62%, p < 0.0001). Patients completed QoL questionnaires a median of 7.7 years (1.3-29.9) after initial TSS, at which point patients with hypopituitarism reported worse energy and fatigue (SF-36 Energy/Fatigue: -7.95, p = 0.026) and cognitive function (CFQ: 5.35, p = 0.026). Patients who received RT reported significantly worse general health (SF-36 General Health Perceptions subscale: -8.44, p = 0.032), physical health (SF-36 Physical Health Composite: -4.07, p = 0.042), physical fatigue (MFI-20 Physical Fatigue subscale: 11.68, p = 0.024) and cognitive functioning (CFQ: 6.64, p = 0.0298). The largest QoL differences were seen in patients who experienced a financial stressor after treatment, independent of treatment type. These patients reported significantly worse QoL for most outcomes, including emotional well-being, physical and mental health, social functioning, energy level, and motivation. RT was associated with self-reported unstable/insecure or very dire financial circumstances (28% v 7%, p < 0.0001). Hypopituitarism, radiation therapy after TSS, and financial stressors are associated with decreased QoL in several domains, and these factors may identify patients who can benefit most from early multidisciplinary care, including financial counseling and additional psychosocial support.

Analysis of adverse events and quality of life in high-grade serous ovarian cancer patients with Olaparib maintenance therapy: A single-center study in China.

Olaparib showed good efficacy and tolerability in the maintenance treatment of patients with initial therapy or high-grade serous recurrent ovarian cancer patients. This study aimed to analyze adverse events (AEs) of patients taking Olaparib and the quality of life (QoL) with Olaparib in 1 center of China. The study included 98 patients who received Olaparib and 210 patients without Olaparib from July 2018 to October 2021 for high-grade serous ovarian cancer in the Gynecology Oncology Department of Jiangsu Provincial Hospital. Information of clinicopathologic characteristics was collected from medical records. Then, we used the QLQ-C30 and Quality of Life Ovarian Cancer 28 Questionnaire (QLQ-OV28) to determine the QoL of 98 patients with and 210 patients without Olaparib. Among all 98 patients with Olaparib, 66 patients in first-line and 32 patients in more than second-line treatment. Regarding the best objective response with Olaparib maintenance in 78 patients with partial remission from most recent chemotherapy, 3 (3.84%) patients showed complete response (CR) and 6 (7.69%) showed as partial response (PR), whereas stable disease was observed in 42 patients (53.84%) and 27 patients (34.6%) showed as progression disease. AEs of Grade 3 and more were: anemia in 16 patients (16.32%), neutropenia in 20 patients (20.40%), thrombocytopenia in 4 patients (4.08%), and headache in 4 patients (4.08%). Dose reduction and drug discontinuation accounted for 73.40% and 20.40%, respectively. Olaparib as maintenance therapy increased QoL on all functioning domains and several symptom domains. Consistent with previous clinical trials, Olaparib maintenance therapy was proved safe and effective. Most patients may experience Grade 1 and 2 AEs. Olaparib maintenance therapy can increase QoL in several domains.

Individuals with stroke three months after hospital discharge reported worse quality of life during the COVID-19 pandemic

PurposeTo compare quality of life (QOL) of individuals with stroke three months after hospital discharge, using generic and specific QOL measures, before and during the COVID-19 pandemic. MethodsIndividuals, who were admitted to a public hospital, were recruited and evaluated before (G1) and during (G2) the COVID-19 pandemic. The groups were matched for age, sex, socio-economic status, and levels of stroke severity (National Institutes of Health Stroke Scale) and functional dependence (Modified Barthel Index). After three months of hospital discharge, they were evaluated and compared using generic (Short-form Health Survey 36: SF-36) and specific (Stroke Specific Quality of Life: SSQOL) QOL measures. ResultsSeventy individuals were included (35 in each group). Statistically significant between-group differences were found for both total SF-36 (p=0.008) and SSQOL (p=0.001) scores, indicating that individuals reported worse QOL during the COVID-19 pandemic. Furthermore, G2 also reported worse generic QOL related to the SF-36 domains of physical functioning, bodily pain, general health perception, and emotional role limitations (p < 0.01) and worse specific QOL related to following SSQOL domains: Family roles, mobility, mood, personality, and social roles (p < 0.05). Finally, G2 reported better QOL related to energy and thinking (p < 0.05) SSQOL domains. ConclusionIn general, individuals with stroke, who were evaluated during the COVID-19 pandemic three months after hospital discharge, reported worse perceptions of QOL in several domains of both generic and specific QOL measures.

Preventing Osteoporosis, Sarcopenia and Obesity to Care about Quality of Life.

A recent review by Kumari and Khanna examined the prevalence of sarcopenic obesity using various comorbidities, diagnostic markers, and possible therapeutic approaches. The authors discussed the strong impact of sarcopenic obesity on quality of life (QoL) and physical health. In addition, there are significant interactions among bone, muscle, and adipose tissue, and the concomitant presence of osteoporosis, sarcopenia, and obesity, termed osteosarcopenic obesity, represents a terrible trio for postmenopausal women and older adults as each of these conditions is associated with adverse outcomes in terms of morbidity, mortality, and QoL in several domains. Timely diagnosis, prevention, and pro-health education are crucial for improving QoL in patients with osteoporosis, sarcopenia, and obesity. Education and prevention play a pivotal role in the long term for individuals to have longer and healthier lives. Osteoporosis, sarcopenia, and obesity share modifiable risk factors that may benefit from physical activity, a healthy and balanced diet, and lifestyle changes. "Prevention is better than cure" and planning are proven strategies for individuals and sustainable healthcare.

Sleep problems in children with Angelman Syndrome: The effect of a behavioral intervention program

Background & aimsThe aim of this study was to investigate the effect of a behavioral intervention on sleep problems, which are significant and an unmet clinical need in children with Angelman Syndrome (AS). Methods & proceduresChildren (2–18 years) with AS and sleep problems were randomized to a behavioral intervention program or a control group. Intervention consisted of a standardized program including home visits, psycho-education, feedback based on direct observation of bedtime routine and video footage of the night and behavioral treatment techniques by a behavioral therapist. Change in sleep duration (primary) and parental sleep, nighttime visits, sleep hygiene, daytime behavior, parental stress and quality of life (secondary) were assessed post-intervention and at follow-up using questionnaires, diary, actigraphy and videosomnography. Outcomes & resultsThe groups, 9 children in each, did not differ at baseline. We found a significant effect of intervention on wake after sleep onset with classical statistical analysis (videosomnography). With single case analysis we found a positive effect on total sleep time (diary and actigraphy) and wake after sleep onset (diary) with a persistent effect on total sleep time (actigraphy) and wake after sleep onset (diary). On secondary outcome there was a significant and persistent effect on sleep hygiene and several quality of life domains. Conclusions & implicationsBehavioral intervention has a positive and persistent effect on sleep problems in children with AS. We advise psycho-education for all parents and use of videosomnography for both evaluation of and feedback on sleep behavior patterns, individual behavioral advice and specific behavioral techniques for children with sleep problems.

Assessment of quality of life after upper extremity transplantation: Framework for patient-reported outcome scale domains.

Upper extremity transplantation offers the promise of restored function and regained quality of life (QOL) for individuals who have sustained hand or arm amputation. However, a major challenge for this procedure becoming an accessible treatment option for patients is the lack of standard measures to document benefits to QOL. Patient-reported outcomes (PRO) measures are well-suited for this kind of intervention, where the perspective of the patient is central to defining treatment success. To date, qualitative work with experts, clinicians, and patients has been used to identify the most important domains of QOL for PRO item development. Specifically, our group's qualitative work has identified several domains of QOL that are unique to individuals who have received upper extremity transplants, which are distinct from topics covered by existing PRO measures. These include emotional and social aspects of upper extremity transplant, such as Expectations and Perceived Outcomes, Integration and Assimilation of Transplant, Fitting in, and Post-Surgical Challenges and Complications. The broad topic of Satisfaction with Transplant was subdivided into three subtopics: Function, Sensation, and Aesthetics. Satisfaction with Sensation was also identified as a unique domain not evaluated by existing PRO measures. This report operationalizes these eight QOL domains by presenting scoping definitions. This manuscript describes the work that has been completed for domain characterization as an early step toward developing standardized PRO measures to evaluate these important outcomes specific to upper extremity transplantation.

Quality of Life During COVID-19 Global Pandemic as the Implementation of Physical Distancing in Medan City - Indonesia

Quality of Life is important but often neglected, especially during the COVID-19 pandemic. Health and economic aspects are currently getting more attention. Therefore, this study tries to measure the Quality of Life of the community during a pandemic, especially when physical distancing is implemented. To measure Quality of Life, the data was collected using a survey conducted electronically using the Google form application. The instrument used in data collection was adapted from WHOQOL instruments. Data collection began after one year of the adoption of a physical distancing policy by the Indonesian government and carried out for one month and collected 370 respondents after filtering. This study shows that the Quality of Life of the community in general is not different from the aspect of the characteristics of the respondents. Family income, age and length of time for physical distancing are domains that affect several Quality of Life domains. Strengthening of religious values, subsidy schemes to maintain family income levels and length of physical distancing can be used as policies taken by the government related to the Quality of Life due to global pandemic disasters.

Quality of Life (QoL) and Psychological Distress among Congestive Heart Failure Patients: A Prospective Observational Study from Pakistan

Introduction: Congestive Heart failure (CHF) is a cardiovascular disease harming the physical, social, psychological, emotional, and well-being status of an individual. The interference due to symptoms and signs of heart failure affects QoL (QoL) and leads to depression among the majority of the patients.&#x0D; Objective: To assess the QoL and depression among CHF patients in Pakistan.&#x0D; Methodology: A descriptive cross-sectional study design was used to assess the QoLand depression among CHF patients in Pakistan. The study population included CHF patients greater than 18 years old, both genders visiting public and private Health Care Facilities located in twin cities of Pakistan. QoL was assessed by using SF 36 and KCCQ while HADS (hospital anxiety and depression scale) was used to evaluate the Depression among 382 CHF patients selected using the convenience sampling technique. Data was entered in SPSS version 21 and statistically analyzed.&#x0D; Results: The results highlighted that use of SF-36 showed the lowest scores for QoL in the domain of role physical (8.82, ± 8.23) followed by the domain of role emotional (10.17, ± 8.6) whereas the highest scores were observed in the domain of mental health (67.26, ± 15.67). On the other hand, the results reported that the use of KCCQ-12 highlighted that the lowest scores for QoL were observed in all the domains of QoL i.e. physical limitations (39.98, ± 31.93), symptoms (73.42, ± 27.94), social limitations (43.21, ± 27.78) and QoL (43.32, ± 23.38).&#x0D; Conclusion: The current study concluded that CHF patients had poor QoL and severe depression. Several domains of QoL among CHF patients were compromised including physical limitations, emotional limitations, social functioning, and pain. For the general symptoms scale, shortness of breath and limitation in sleeping posture are the most commonly affected leading to compromised quality of life. Interventions must be designed with a focus on patient counseling tailored to the needs for improving QoL and minimizing depression.

Postoperative but not preoperative depression is associated with cognitive impairment after cardiac surgery: exploratory analysis of data from a randomized trial

BackgroundIn this study we hypothesize that depression is associated with perioperative neurocognitive dysfunction and altered quality of life one month after surgery.MethodsData were obtained as part of a study evaluating cerebral autoregulation monitoring for targeting arterial pressure during cardiopulmonary bypass. Neuropsychological testing was performed before surgery and one month postoperatively. Testing included the Beck Depression Inventory, a depression symptoms questionnaire (0–63 scale), as well as anxiety and quality of life assessments. Depression was defined as a Beck Depression Inventory score > 13.ResultsBeck Depression data were available from 320 patients of whom cognitive domain endpoints were available from 88–98% at baseline and 69–79% after surgery. This range in end-points data was due to variability in the availability of each neuropsychological test results between patients. Depression was present in 50 (15.6%) patients before surgery and in 43 (13.4%) after surgery. Baseline depression was not associated with postoperative domain-specific neurocognitive function compared with non-depressed patients. Those with depression one month after surgery, though, had poorer performance on tests of attention (p = 0.017), memory (p = 0.049), verbal fluency (p = 0.010), processing speed (p = 0.017), and fine motor speed (p = 0.014). Postoperative neurocognitive dysfunction as a composite outcome occurred in 33.3% versus 14.5% of patients with and without postoperative depression (p = 0.040). Baseline depression was associated with higher anxiety and lower self-ratings on several quality of life domains, these measures were generally more adversely affected by depression one month after surgery.ConclusionsThe results of this exploratory analysis suggests that preoperative depression is not associated with perioperative neurocognitive dysfunction, but depression after cardiac surgery may be associated with impairment in in several cognitive domains, a higher frequency of the composite neurocognitive outcome, and altered quality of life.Trial Registrationwww.clinicaltrials.gov, NCT00981474 (parent study).

Why Men Fare Worse: A Mixed-Methods Study Examining Gender Differences in Nursing Home Resident Quality of Life.

Despite research documenting gender differences in numerous outcomes in later life, we know little about gender differences in quality of life (QoL) for nursing home (NH) residents. This study examines the relationship between gender and residents' QoL, including possible reasons for differences observed. We used a mixed-methods design including surveys with a random sample of Minnesota NH residents using a multidimensional measure of QoL (n = 9,852), resident clinical data, facility-level characteristics (n = 364), interviews with residents (n = 64), and participant observations. We used linear mixed models and thematic analysis of resident interviews and observations to examine possible gender-related differences in residents' QoL. After controlling for individual and facility characteristics, men reported lower overall QoL than women, including significantly lower ratings in several QoL domains. In interviews, men noted being less satisfied with activities than women, having fewer friends, and being less able to rely on family for support. Some women described the NH as a place of respite, but men more often described being dissatisfied with life in the NH and undesirable for long-term living. Our observations were consistent with interview findings but provide additional nuances, such as that some men organized their own social groups. Our findings suggest that men and women experience QoL differently in NHs, with men reporting lower QoL in several domains. Tailoring more activities for men and finding ways to strengthen relationships for men in NHs could help reduce the gender differences in QoL we observed.

The Predictive Role of Psychological Status and Disease Severity Indexes on Quality of Life Among Patients with Non-CF Bronchiectasis

Objective Bronchiectasis is a chronic suppurative lung disease that significantly impacts the patients’ quality of life. The aim of this study is to evaluate the relationship between quality of life and patient’s psychological status and bronchiectasis disease severity indexes in patients with non-cystic fibrosis bronchiectasis. We also aimed to investigate the validity and reliability of Turkish version of Quality of Life Questionnaire-Bronchiectasis (V3.1) in Turkish adult bronchiectatic patients.MATERIAL AND Methods In total, 90 stable non-cystic fibrosis bronchiectatic adult patients were enrolled in this study. At baseline, dyspnea score, body mass index, lung function tests, sputum cultures, number of exacerbations and hospital admissions, and disease severity indexes were recorded. All of the participants underwent quality of life assessment using both Quality of Life Questionnaire-Bronchiectasis V3.1 and Short Form-36 questionnaires, and psychological status was evaluated by using Hospital Anxiety and Depression Scale.Results In all study participants, anxiety was diagnosed in 27/90 (30%) of patients, and depression was diagnosed in 37/90 (41%) of patients. Patients with anxiety and depression had lower quality of life scores in various domains (P = .026-.001), and Hospital Anxiety and Depression Scale scores negatively correlated with several quality of life domains (r = −0.216 to 0.343). Female patients had higher risk for depression (55% vs 22%, P = .002) and worse quality of life than males (P = .016-.038). Several life quality scores of both instruments were worse in patients with moderate–severe disease severity indexes when compared with those of mild groups. Moreover, Turkish version of newly described Quality of Life Questionnaire-Bronchiectasis V3.1 questionnaire was found to be a reliable and valid instrument to evaluate the quality of life.Conclusion These results emphasize the importance of mental health and disease severity as significant determinants of the life quality in patients, particularly female patients with non-cystic fibrosis bronchiectasis.

Impact of neurobehavioral disorders on quality of life in idiopathic parkinson??s disease without dementia.

Background: Parkinson's Disease (PD) is a multifactorial neurodegenerative pathology, characterized by motor symptoms (tremor, bradykinesia, rigidity and postural instability) and non-motor symptoms (depression, anxiety, apathy, sleep disturbances, dysautanomic symptoms, among others) that affect the worsening of the Quality of Life (QOL) of people with this diagnosis. Objective: identify the impact of neurobehavioral alterations in QOL on idiopathic PD without dementia. Methods: 61 references, 40 research articles, 2 systematic reviews, and 17 review articles were used in the preparation of this study. The literature search was performed in the Pubmed and Scopus databases. Results: Neurobehavioral disorders such as depression (with a prevalence of 50%) were found to impact on QOL impairment, neurocognitive functioning (attention, memory, executive functions), and impairment in the basic, instrumental and advanced Activities of Daily Living (ADL). Anxiety is another disorder (with a prevalence of more than 40%) that impacts on QOL, especially in motor fluctuations, ADL, working memory and inhibition tasks, followed by apathy that usually occurs in advanced stages of the disease (prevalence of more than 48%) and affects several domains of QOL. Conclusion: It is necessary to intervene neurobehavioral alterations in earlier phases of the disease, with the aim of generating treatments that gets a better QOL.

Abstract IA29: Applying the Transcreation Framework to Address Psychosocial Health Disparities among Latina Breast Cancer Survivors

Abstract PURPOSE: Latina breast cancer survivors, especially those who primarily speak Spanish, experience worse symptoms and quality of life than non-Latina survivors. This presentation will describe a new framework, the Transcreation Framework for Community-Engaged Behavioral Interventions to Reduce Health Disparities, and how it was applied to develop a translational research program to address psychosocial health disparities among Spanish-speaking Latina breast cancer survivors (SSBCS). METHODS: Applying the Transcreation Framework (TF), the research program uses community-engaged interventions to equip SSBCS with information and skills to manage their disease. We focus on community-based self-care approaches because many underserved communities have limited access to cancer support services and oncology specialists. Applying the framework, we used rigorous scientific methods in community settings to develop, implement and evaluate the effectiveness of behavioral interventions in reducing psychosocial distress and symptoms among urban and rural SSBCS. RESULTS: We define transcreation as the process of planning, delivering, and evaluating interventions so that they resonate with the community experiencing health disparities, while achieving intended health outcomes. Following the TF’s seven iterative steps, we: 1) engaged community partners; 2) selected a theory to guide intervention development; 3) identified candidate evidence-based interventions and community best practices; 4) designed a new transcreated program prototype; 5) designed studies to test the intervention in community settings; 6) built community capacity to deliver the interventions; and 7) delivered and evaluated intervention implementation processes and outcomes. Formative research identified four general areas of need among SSBCS: fear; loss of control over cancer and life; lack of social support; lack of culturally appropriate care; and lack of cancer information in Spanish that they could understand. Population-based research identified cancer self-efficacy and social support as promising mechanisms to improve quality of life of SSBCS, thus we selected social-cognitive theory as the basis for the intervention prototype. With extensive community involvement, we identified an evidence-based stress management program and a community-based program and incorporated them with our prior research to develop Nuevo Amanecer, a new transcreated 8-week cognitive-behavioral stress management program for delivery by peers (trained SSBCS). Two sequential randomized controlled trials were conducted with urban SSBCS first, then rural SSBCS. The program improved several quality of life domains and decreased breast cancer concerns and depressive and bodily symptoms in the first RCT, and reduced anxiety and improved self-efficacy in performing several stress management skills in the 2nd RCT. Subsequently, we used the TF to develop a survivorship care planning and physical activity intervention (health coach plus mobile app and activity tracker) and tested it in a 2-month pilot study among SSBCS that resulted in reduced fatigue and health distress, improved emotional well-being, increased knowledge of needed follow-up care and resources, and an average increase of 1,313 daily steps. CONCLUSIONS: Engaging underserved communities in the design and implementation of behavioral interventions for cancer survivors leads to programs that are more likely to be effective and sustained because they are embedded and delivered in the communities experiencing cancer health disparities. Peer- and community health worker-delivered cancer support programs could be a low-cost, effective method for meeting the psychosocial needs of and increasing inclusion of underrepresented groups in cancer research. Research Implications: The TF can guide development and testing of behavioral interventions for communities experiencing cancer health disparities. The TF results in interventions that balance fidelity to evidence with fit to the setting because they are designed with community. Citation Format: Anna Maria Nápoles. Applying the Transcreation Framework to Address Psychosocial Health Disparities among Latina Breast Cancer Survivors [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr IA29.

The Course of Quality of Life and Its Predictors in Nursing Home Residents With Young-Onset Dementia

ObjectiveTo explore the course of quality of life (QoL) and possible resident-related predictors associated with this course in institutionalized people with young-onset dementia (YOD). DesignAn observational longitudinal study. Setting and ParticipantsA total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands. MethodsSecondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. QoL was assessed with proxy ratings, using the Quality of Life in Dementia (QUALIDEM) questionnaire at 4 assessment points over 18 months. Predictors included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms, and psychotropic drug use at baseline. Multilevel modeling was used to adjust for the correlation of measurements within residents and clustering of residents within nursing homes. ResultsThe total QUALIDEM score (range: 0-111) decreased over 18 months with a small change of 0.65 (95% confidence interval −1.27, −0.04) points per 6 months. An increase in several domains of QoL regarding care relationship, positive self-image, and feeling at home was seen over time, whereas a decline was observed in the subscales positive affect, social relations, and having something to do. Residents with higher levels of QoL and more advanced dementia at baseline showed a more progressive decline in QoL over time. Sensitivity analyses indicated a more progressive decline in QoL for residents who died during the follow-up. Conclusion and ImplicationsThis study shows that although overall QoL in nursing home residents with YOD was relatively stable over 18 months, there were multidirectional changes in the QoL subscales that could be clinically relevant. Higher levels of QoL and more advanced stages of dementia at baseline predicted a more progressive decline in QoL over time. More longitudinal studies are needed to verify factors influencing QoL in YOD.

Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs.

With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs. In order to explore the outcomes and costs of skilled support for this group of people, quality of life was assessed for 110 people in 35 services in England. Information on costs was also collected. People who received consistently good active support experienced better outcomes in terms of several quality of life domains. Good support did not require significantly more staff time, and there was no evidence of higher total costs for those receiving good support. The inclusion of active support in government guidance and local commissioning practices related to people with severe intellectual disabilities is likely to improve user outcomes. Observation should be an important element in measuring service quality.