Association between duration of somatostatin analogs (SSAs) use and quality of life in patients with carcinoid syndrome in the United States based on the FACT-G instrument.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e15693-e15693
Author(s):  
Daniel M. Halperin ◽  
Lynn Huynh ◽  
Jennifer L Beaumont ◽  
Beilei Cai ◽  
Todor Totev ◽  
...  

e15693 Background: Carcinoid syndrome (CS) results from the secretion of bioactive amines by functional neuroendocrine tumors. The only FDA-approved agents to treat carcinoid syndrome symptoms (CSS) are SSAs. This study assessed the association of duration of SSA use and quality of life (QoL) among patients with CSS usingthe validated Functional Assessment of Cancer Therapy-General (FACT-G) instrument. Methods: Patients with CSS in the US were recruited by NCAN for a two-part online, anonymous survey (~6 months apart). The first survey was fielded between July-October 2016 and results are reported here. Eligible patients were ≥18 years old with CSS and received either SSA or non-SSA treatment for CSS control. The survey consisted of demographic, clinical and QoL questions, including FACT-G. Descriptive and multivariable regression analyses, adjusting for demographic and clinical characteristics, were performed to assess predictors of FACT-G QoL scores. Duration of SSA use was categorized into quartiles ( < 2.7, 2.7-4.42, 4.43-8.0, and > 8.0 years). Results: Among 117 patients who completed the first survey, 76.9% were female and 87.2% Caucasian with a mean age of 58.0 years. A predominant number of patients (98.3%) received SSAs in the past month. The mean ± SD FACT-G total score was 67.6 ± 20.0 (possible range: 0-108), lower than that of the general US population (80.1 ± 18.1). The mean ± SD duration of SSA use was 6.1 ± 4.7 years. Descriptive analysis suggested that patients receiving SSA treatment for > 8 years had higher (better) FACT-G subscale and total scores than reference group < 2.7 years. Multivariable models showed that FACT-G total score was 11.3 points ( P= 0.033) higher for patients treated with SSA > 8 years compared to those treated for < 2.7 years. Similar patterns were observed for two FACT-G subscales - Physical Well Being and Functional Well Being. Conclusions: The duration of SSA use was positively associated with QoL benefit among CS patients. This may be explained by long-term effectiveness of SSAs or selection bias favoring patients with more indolent disease. Future studies will be needed to distinguish between these possibilities.

2019 ◽  
Vol 11 (1) ◽  
pp. 9-18
Author(s):  
Abdul Wakhid ◽  
Ana Puji Astuti ◽  
Maya Kurnia Dewi

Logoterapi merupakan terapi untuk menemukan makna positif dibalik sebuah kejadian yang tidak diharapkan. Logoterapi dilaksanakan secara individu maupun berkelompok dalam bentuk konseling dan berorientasi pada pencarian makna hidup individu. Tujuan logoterapi meningkatkan makna pengalaman hidup individu yang diarahkan kepada pengambilan keputusan yang bertanggung jawab. Penelitian ini dilakukan dengan menggunakan rancangan pre-experiment dengan metode pre and post test group, artinya pengumpulan data dilakukan terhadap responden untuk membandingkan kualitas hidup sebelum dan sesudah dilakukan intervensi. Teknik pengambilan sampel dilakukan dengan metode total sampling yaitu pengambilan seluruh sampel dengan tetap memperhatikan kriteria yang telah ditetapkan. Jumlah pasien yang menjalani hemodialisis di RSUD Ungaran sebanyak 21 orang dan di RSUD Ambarawa sebanyak 25 pasien. Analisis data dilakukan dengan menggunakan uji t test dependent. Hasil penelitian didapatkan bahwa dari 46 responden didapatkan rata-rata skor kualitas hidup pasien yang mejalani hemodialisis sebesar 60.22 dengan skor terrendah 55 dan skor tertinggi 69. Bahwa dari 46 responden didapatkan rata-rata skor kualitas hidup pasien yang mejalani hemodialisis sebesar 88.72 dengan skor terrendah 79 dan skor tertinggi 103. Hasil uji statistik dengan uji t test dependent diketahui ada pengaruh logoterapi terhadap kemampuan memaknai hidup pada klien yang menjalani hemodialisis di RSUD Kabupaten Semarang (p value: 0,0001). Saran perlunya peningkatan kemampuan perawat dalam memberikan layanan kesehatan termasuk pemberian atau pemanduan penemuan makna hidup bagi pasien hemodialysis, agar selain dengan hemodialysis, ada faktor internal dari pasien yang dapat dijadikan sebagai motivasi untuk sembuh dari penyakit.   Kata Kunci: Logoterapi, kualitas hidup   IMPROVE THE QUALITY OF LIFE OF PATIENTS WITH RENAL FAILURE WHO UNDERWENT HEMODIALYSIS   ABSTRACT Logotherapy is a therapy to discover the positive meaning behind an unexpected event. Logotherapy is carried out individually or in groups in the form of counseling and oriented to the search for the meaning of individual life. This study aims to improve the quality of life of patients with renal failure who underwent hemodialysis. This research was conducted by using pre-experiment with pre-post test study. The sampling technique was done by the convenience sampling. The number of patients undergoing hemodialysis as many as 46 respondents. Data analysis was done by using test t test dependent. The result showed that from 46 respondents got the mean of quality of life of patients who had hemodialysis 60.22 with lowest score 55 and highest score 69. Whereas from 46 respondents got the mean score of life quality of patients who had hemodialysis 88.72 with score the lowest score 79 and the highest score 103. The result of statistical test with t test dependent is known there is influence of logoterapi to the ability of meaningful life on client who undergo hemodialysis at Semarang Regency hospitals (p value: 0.0001). Advice on the need to improve the nurse's ability to provide health services, including the provision or guidance of the discovery of the meaning of life for hemodialysis patients, in addition to hemodialysis, there are internal factors of the patient that can be used as a motivation to recover from illness.   Keywords: Logotherapy, quality of life, kidney failure.  


Author(s):  
Vera Arsenyeva ◽  
Boris Martynov ◽  
Gennadiy Bulyshchenko ◽  
Dmitriy Svistov ◽  
Boris Gaydar ◽  
...  

Gliomas make up about 8 cases per 100,000 population and the number of patients with this disease is only increasing. There can be not only various types of neurological deficits among the symptoms, but also personal and emotional changes, that seriously affects the quality of life. The modern model of health care includes not only recovery of the patient’s physical functions, but also his or her psychosocial well-being. In particular, the assessment and study of the characteristics of health-related quality of life, as well as cognitive functions in patients with gliomas, is increasingly recognized as an important criterion when considering the effectiveness of treatment. To date, the features of health related quality of life and cognitive functions of patients with epilepsy and acute cerebral circulation disorders have been studied sufficiently, and, as a result, techniques have been developed that accurately assess the QOL and CF in patients with these diseases. These are QOLIE-31 and QOLIE-AD-48 questionnaires for patients with epilepsy. This is the National Institutes of Health Stroke Scale (NIHSS), Orgogozo stroke scale (OSS), World Federation of Neurological Surgeons (WFNS) scale for the clinical assessment of subarachnoid hemorrhage (SAH) for patients with acute cerebrovascular accident. At the same time, there are no generally accepted methods for assessing quality of life and neurocognitive functions that are sensitive to changes in the condition of patients with gliomas in the early postoperative period by the time of discharge from the hospital. As a result, there is no systematic information on the dynamics of the quality of life of such patients, their neurocognitive functioning. The purpose of this article was to study the literature on QOL and CF in patients affected by neurological and neurosurgical disorders for the further selection of optimal methods for assessing dynamics of the condition of patients with glial brain tumors before and after surgery. At the moment, such requirements are only partially met by the EORTC QLQ-C30 questionnaire and its application EORTC QLQ-BN20.


2021 ◽  
Vol 10 (10) ◽  
pp. 2187
Author(s):  
Omrit Feldman ◽  
Eran Goldstien ◽  
Benjamin Rolnik ◽  
Ariel B. Ganz ◽  
Shahar Lev-Ari

Stuttering is a speech disorder that can cause disturbances in the timing and flow of speech. In addition to being a communication disorder, stuttering is often accompanied by a reduction in the quality of life and has impacts on social status, mental well-being, self-acceptance, and the chances of integration into the labor market. The Inquiry Based Stress Reduction (IBSR) program, developed in the United States by Byron Katie in 1986, is the clinical application of “The Work” method (Thework.com) and represents an emerging mindfulness and cognitive-reframing method. IBSR has been demonstrated to improve mental health and well-being in adults and may alleviate psychological and psychosocial symptoms of stuttering. The purpose of this trial was to examine the effect of a 12-week IBSR intervention on the overall stuttering experience and indicators of anxiety, psychological flexibility, and well-being among adults who stutter (AWS). This study was a randomized controlled clinical trial. Participants were randomized to IBSR (n = 28) and control (n = 28) groups. Validated questionnaires of overall stuttering experience (OASES-A), anxiety (STAI), psychological flexibility (PFQ), and satisfaction with life (SWLS) were completed before, after, and one month after the intervention. An intention-to-treat approach was implemented for analysis. Our results show that participants in the IBSR intervention group exhibited a greater improvement in their overall stuttering experience as compared to the control group, as well as in general information on stuttering awareness and perception, reactions to stuttering, communication in daily situations, and quality of life. In addition, we found a greater reduction in anxiety levels and an increase in satisfaction-with-life scores in the IBSR group. These results indicate that IBSR can improve the overall stuttering experience.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.


2021 ◽  
Vol 28 (2) ◽  
pp. 1495-1506
Author(s):  
Brent Burbridge ◽  
Hyun Lim ◽  
Lynn Dwernychuk ◽  
Ha Le ◽  
Tehmina Asif ◽  
...  

Introduction: Venous access is a crucial element in chemotherapy delivery. It remains unclear whether cancer patients prefer a port to a peripherally inserted central catheter (PICC). Our study aimed to assess cancer patients’ satisfaction with their venous access device and to compare the quality of life (QoL) of subjects with a PICC to those with a port. Methods: In this prospective cohort study, EORTC QLQ-C30, and a locally developed quality of life survey (QLAVD), designed to assess satisfaction with venous access devices, were administered to breast or colorectal cancer patients over a one-year period following the device insertion. Mixed effects models were used to assess changes on mean scores at different time points. Results: A total of 101 patients were recruited over a three-year period, (PICC group, n = 50; port group, n = 51). Survey response rates for months one and three were 72% and 48%, respectively. Overall, no significant differences were noted between the two groups in relation to EORTC QOL. At three months, the mean pain scores were 3.5 ± 2.3 for the port and 1.3 ± 0.75 for PICC (<0.001). The mean score for a negative effect of the venous access device on psychosocial well-being was 6.0 ± 4.1 for PICC and 3.0 ± 2.7 for the port (p = 0.005). Complications related to PICCs occurred in 38% patients versus 41% with a port (p > 0.24). Conclusions: Although subjects with a port experienced more pain during the device insertion or access for chemotherapy, it had a smaller negative impact on psychosocial scores than the PICC. No significant differences in complications rates were observed between the two devices.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Bahareh Honari ◽  
Seyed Mehran Homam ◽  
Maryam Nabipour ◽  
Zahra Mostafavian ◽  
Arezou Farajpour ◽  
...  

Abstract Background Epilepsy is one of the most common neurological disorders with physical, emotional, and social consequences. Previous studies indicate that epilepsy symptoms can highly affect the epileptic patients’ satisfaction in life. The aim of the present study is to investigate the QOL of People with Epilepsy (PWE) in Khorasan Razavi province, Iran. Methods In this study, 100 patients were randomly selected. After confirmation of the diagnosis of epilepsy by neurologists and fulfilling the entrance criteria, patients completed the Quality of Life in Epilepsy-31 inventory (QOLIE-31) questionnaire. Finally, data was analyzed statistically by SPSS software. Results The study sample comprised 100 PWE, aged 18–74 years (34 ± 13), of whom 58 (58%) were females. Tonic-colonic seizure was the most common (60%) type of seizure. The obtained score of each subscale and the range of the QOLIE-31 total score was 16.40–79.18 with the mean of 50 (SD = 16). The energy-fatigue subscale score was significantly higher in patients younger than 35 (p = 0.018). The data analysis showed that the seizure worry subscale was significantly higher in single patients (p = 0.04). Duration of epilepsy had a positive correlation with QOLIE-31 total score (p = 0.038), and a negative relationship with energy-fatigue subscale (p = 0.018). In contrast with previous studies, which reported the frequency of the epileptic episodes as the most important predictor of QOL, our results showed no significant correlation between the number of the episodes and overall QOL score (p = 0.063). However, the number of episodes was significantly correlated with emotional well-being and cognition subscales. Furthermore, the results indicated that poor QOL score is correlated with depressed mood. Conclusion In fact, the ultimate and preferred outcome of all treatments and care interventions is the patient’s QOL. Thus, improvement of the QOL by means of obtaining more information about its contributing factors, in PWE should be one of the main goals in the patients’ treatment.


2021 ◽  
Vol 30 (4) ◽  
pp. 323-343
Author(s):  
Matthew Thomas Clement ◽  
Chad L. Smith ◽  
Tyler Leverenz

Much sustainability scholarship has examined the environmental dimensions of subjective and objective well-being. As an alternative measure of human well-being, we consider the notion of quality of life and draw on a framework from the sustainability literature to study its association with ecological impact, specifically the carbon footprint. We conduct a quantitative analysis, combining zip-code level data on quality of life and the carbon footprint per household for the year 2012 across the continental United States ( n=29,953). Findings consistently show a significant, negative association between quality of life and the carbon footprint. Our findings point to the potential advantages of utilizing robust objective measures of quality of life that extends beyond economic well-being and life expectancy alone. Furthermore, our findings question the conventional wisdom that sustainability requires sacrifices, while suggesting opportunities for how increased levels of sustainability may be achieved while retaining high levels of quality of life.


2018 ◽  
Vol 34 (2) ◽  
pp. 118-125 ◽  
Author(s):  
Jonathon Judkins ◽  
Irena Laska ◽  
Judith Paice ◽  
Priya Kumthekar

Purpose: The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups. Methods: A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being. Results: There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains (“Rate your overall physical/psychological/social/spiritual well-being”). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL. Conclusions: This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.


2018 ◽  
Vol 8 (1) ◽  
pp. 22-27 ◽  
Author(s):  
Mahin Naderifar ◽  
Mansoureh Zagheri Tafreshi ◽  
Mahnaz Ilkhani ◽  
Magid Reza Akbarizadeh ◽  
Fereshteh Ghaljaei

Introduction: Institutionalizing adherence to treatment in hemodialysis patients is one of the important nursing goals for improving quality of life in these patients. Adherence to treatment approach in these patients can play a pivotal role in improving the health level and feeling of well-being. Objectives: This study aimed at determining the quality of life in hemodialysis patients presenting to hemodialysis centers affiliated to Shahid Beheshti University of Medical Sciences, Tehran, Iran, on the basis of adherence to treatment. Patients and Methods: This is a correlational descriptive-analytic study. The study population consisted of hemodialysis patients in five hospitals affiliated to Shahid Beheshti University of Medical Sciences, Tehran, in 2017. The data were collected during 8 months from October 2016 to May 2017 in Tehran. A sample volume of 200 patients was determined in this study. Demographic information questionnaire, KDQOL-SF, and ESRD-AQ were applied in data collection. Availability sampling method was used to select the samples on the basis of inclusion criteria. The data were analyzed with SPSS version 18 using descriptive and inferential statistics. Results: Our findings showed that 50% of the patients were male. Most of the respondents of the study (23%) were 51-60 years old. The results indicated that the mean score of quality of life of patients was 50.42±22.81. The mean total score of adherence to treatment was 901.13±85.30. Also, the correlation coefficient in this study revealed a significant correlation between total score of quality of life and adherence to treatment (r=0.218, P<0.01). Conclusion: Considering the significant correlation between adherence to treatment and life quality of patients, healthcare providers can promote the life quality of these patients via focusing on planning programs for emphasizing the role of education and interventions that improve adherence to treatment in these patients.


2021 ◽  
Vol 10 (17) ◽  
pp. 3826
Author(s):  
Juan Rodríguez-Mansilla ◽  
Abel Mejías-Gil ◽  
Elisa María Garrido-Ardila ◽  
María Jiménez-Palomares ◽  
Jesús Montanero-Fernández ◽  
...  

Background: The functional deficits in people with fibromyalgia can be related to the level of physical activity performed. This study investigated the effectiveness of an active exercise programme versus exercise for well-being improving pain, flexibility, static balance, perceived exertion and quality of life of women with fibromyalgia; Methods: A randomised, single-blind, controlled trial was conducted. A total of 141 of women diagnosed with fibromyalgia were enrolled and randomised to an active exercise program group (n = 47), where they performed physical active exercises, an exercise for well-being group (n = 47), which performed the Qi Gong exercises named ‘the twenty Wang Ziping figures for health and longevity’, and a control group (n = 47), which did not receive any intervention, for a period of 4 weeks. Measures were taken at baseline and after the treatment. The primary outcome measures were static balance and centre of gravity (Wii-Fit Nintendo ©), flexibility (test de Wells and Dillon), pain (Visual Analogue Scale) and quality of life (Spanish-Fibromyalgia Impact Questionnaire). The secondary outcome measure was the perceived exertion during activity (BORG Scale). Results: In total, 93 participants completed the study. The mean value of the age was 52.24 ± 6.19. The post intervention results showed statistically significant improvements in the exercise for well-being and the active exercise programme groups vs. the control group in relation to pain (p = 0.006 active exercise programme group, p = 0.001 exercise for well-being group), static balance (p < 0.001 active exercise programme group) and quality of life (p < 0.001 active exercise programme group, p = 0.002 exercise for well-being group). In addition, the mean scores related to perceived fatigue during the sessions were 6.30 ± 1.88 for the active exercise programme group and 5.52 ± 1.55 for the exercise for well-being group. These differences were not significant. Conclusions: The active exercise program and exercise for well-being improved flexibility, static balance, pain and quality of life of women with fibromyalgia. The participants of the active exercise programme achieved better results that those of the exercise for well-being.


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