The development of a financial toxicity patient-reported outcome instrument (PRO) in cancer.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6612-6612
Author(s):  
Jonas A. De Souza ◽  
Bonnie Yap ◽  
Fay J. Hlubocky ◽  
Mark J. Ratain ◽  
David Cella ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Tumor Type ◽  
Importance Score ◽  
Financial Toxicity ◽  
Outcome Instrument ◽  
The Mean ◽  
Stage 1 ◽  
The Impact

6612 Background: Considering patients' (pts) subjective experience is essential for optimal decision making and care. However, despite increasing recognition of the impact of costs on oncology care, there is no accepted and validated PRO that specifically describes the financial burdens cancer pts experience. Methods: A financial toxicity PRO in advanced cancer pts undergoing treatment was developed in 3 stages. Stage 1: literature review and semi-structured qualitative interviews with pts for item generation; items were classified into 5 theoretical domains (financial, resources, affect, coping and family); draft items were examined for redundancy. Stage 2: pts assessed the items for readability and importance to their quality of life via two Likert scales (0 – 3 scales) to generate an importance score; items were ranked by decreasing importance score until at least 3 items per theoretical domain had been retained. Stage 3: pilot-testing assessing inter-item (IIC) and item–total (ITC) correlations to identify redundancy (Spearman’s rho >0.7, p<0.05) and statistically unrelated content; items were formatted in accordance with the Functional Assessment of Cancer Therapy (FACT) quality of life measure, with a 7-day time window and a 5-point Likert scale. Subject data on tumor type, age, gender, race, income, insurance type and educational level were collected. Results: 132 pts (20 in stage 1, 45 in stage 2 and 67 in stage 3) were approached and 101 agreed to participate. Stage 1: literature review, 20 pts, and 6 investigators generated 98 items, which were reduced to 58 due to redundancy. Stage 2: 35 pts ranked the items for importance, and 30 items were retained. The mean importance score was 1.83 (range 1.04 – 2.11). Stage 3: 46 pts completed the 30-item instrument. Their mean age was 61 years; 59% were male and 53% had private or employer purchased insurance; 14 items were excluded due to high IIC and 3 were excluded due to non-significant ITC, resulting in a 13-item PRO. The mean IIC and ITC of the final items were 0.373 and 0.645, respectively. Conclusions: A 13-item financial toxicity PRO has been developed in 101 pts with advanced cancers. This instrument will undergo validation as a subscale of the FACT in a larger cohort of cancer pts.

scholarly journals QOL-36. USE OF CANNABINOIDS IN THE PEDIATRIC CENTRAL NERVOUS SYSTEM TUMOR POPULATION

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii438-iii438
Author(s):  
Kathleen Dorris ◽  
Jessica Channell ◽  
Ashley Mettetal ◽  
Molly Hemenway ◽  
Natalie Briones ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Central Nervous System ◽  
Nervous System ◽  
Cell Activity ◽  
Cns Tumors ◽  
Low Grade ◽  
Tumor Type ◽  
Central Nervous System Tumor ◽  
The Impact

Abstract BACKGROUND Cannabinoids, including cannabidiol (CBD) and tetrahydrocannabinol (THC), are a class of compounds found in marijuana. Numerous studies in adults have examined cannabinoid use in management of cancer-related symptoms such as nausea, anorexia, and pain. Less is known about the use in the pediatric oncology population. METHODS A prospective observational study has been ongoing since 2016 at Children’s Hospital Colorado to evaluate cannabinoids’ impact using PedsQL™ modules on quality of life of pediatric patients with central nervous system (CNS) tumors who are 2–18 years old. Laboratory assessments of T-cell activity and pharmacokinetics of CBD, THC and associated metabolites are in process. Diaries with exploratory information on cannabinoid use patterns are being collected. RESULTS Thirty-three patients (14:19; male:female) have been enrolled with a median age of 6.4 years (range, 2.9–17.7 years). The most common tumor type in enrolled patients is embryonal tumors (13/33; 39%). Nine (27%) patients have low-grade glial/glioneuronal tumors, and eight (24%) had high-grade/diffuse midline gliomas. The remaining patients had ependymoma or craniopharyngioma. The median time on cannabinoids is 9 months. Most (n=20) patients have used oral products with CBD and THC. One patient continues on cannabinoid therapy in follow up. Preliminary immune function analyses identified impaired neutrophil superoxide anion production and chemotaxis in patients taking cannabinoids at early time points on therapy. CONCLUSIONS Families of children with various CNS tumors are pursuing cannabinoid therapy for both antitumor and supportive care purposes. Analysis of the impact of cannabinoids on patients’ quality of life is ongoing.

scholarly journals Impact of dental caries on oral health related quality of life among preschool children: perceptions of parents

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mina Pakkhesal ◽  
Elham Riyahi ◽  
AliAkbar Naghavi Alhosseini ◽  
Parisa Amdjadi ◽  
Nasser Behnampour
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Dental Caries ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Dmft Index ◽  
The Mean ◽  
The Impact

Abstract Background Childhood dental caries can affect the children’s and their parents’ oral health-related quality of life. The aim of the present study was to evaluate the impact of oral and dental health conditions on the oral health-related quality of life in preschool children and their parents. Methods In this descriptive-analytical cross-sectional study, samples were selected from children 3 to 6 years old enrolled in licensed kindergartens using "proportional allocation" sampling. Then, the parents of the children were asked to complete the Early Childhood Oral Health Impact Scale (ECOHIS). Results In this study, 350 children aged 3 to 6 years were evaluated with a mean age of 4.73 years. The mean dmft index (decayed, missed, and filled teeth) was 3.94 ± 4.17. The mean score of oral health-related quality of life was 11.88 ± 6.9, which 9.36 ± 5.02 belongs to the impact on children and 2.52 ± 3.20 to parents' impact. Conclusions The mean score of ECOHIS increased with the dmft index increase in children, indicating a significant relationship between the dmft and ECOHIS score. These outcomes can be used as proper resources to develop preventive policies and promote oral health in young children.

Impact of Design on Emotional, Psychological, or Social Well-Being for People With Cognitive Impairment

2018 ◽  
Vol 12 (3) ◽  
pp. 220-232 ◽  
Author(s):  
Elizabeth Karol ◽  
Dianne Smith
Keyword(s):  
Quality Of Life ◽  
Cognitive Impairment ◽  
Literature Review ◽  
Thermal Comfort ◽  
Well Being ◽  
Design Expertise ◽  
Relationship Of ◽  
The Impact ◽  
The Relationship

Aim:The objective of this article is to identify and analyze what is known about characteristics in and around the home that support well-being for those with cognitive impairment. This could provide direction for designers of homes in general, but specifically for designers trying to meet the needs of people with cognitive impairment.Background:It has been established that there is a relationship between psychological well-being and a person’s environment. Research also shows that particular design aspects can reduce the impact of cognitive impairment. However, there is limited design expertise in the Australian housing market to create supportive spaces which will help to reduce the impact of the disability for those with cognitive impairment.Method:A literature review was carried out to determine the extent and details of what is known about the relationship of home design and its impact on emotional, psychological, or social well-being for people with cognitive impairment.Conclusions:The study indicates that researchers in various disciplines understand that pragmatic design inputs such as thermal comfort and adequate lighting are important for people with cognitive impairment. In addition, some researchers have shown or surmise that there are other “intangible” designer-controlled elements that have beneficial impacts on people with cognitive impairment. Details of these intangible elements are sparse, and how much they might improve the quality of life for a person with cognitive impairment is not well understood. Further research is required to meet a growing need.

scholarly journals Dermatoses in the hospital and their impact on quality of life

2021 ◽  
Vol 12 (4) ◽  
pp. 462-463
Author(s):  
Kaoutar Sof ◽  
Soraya Aouali ◽  
Sara Bensalem
Keyword(s):  
Quality Of Life ◽  
Alopecia Areata ◽  
Drug Eruption ◽  
Skin Tumors ◽  
Severe Psoriasis ◽  
Dermatology Department ◽  
Verneuil’S Disease ◽  
The Mean ◽  
The Impact

Sir, Dermatological pathologies may be responsible for the creation of a real handicap, affecting the patient’s self-esteem and their professional and social life. The aim of this study was to assess the impact of diseases on the quality of life of patients hospitalized at the dermatology department. The following was a retrospective study that included patients over eighteen years of age, hospitalized at the dermatology department of Hospital Mohammed VI in Oujda from January 2018 through December 2019. The Arabic version of the validated DLQI was used for all patients [1]. A total of 294 patients were collected, with a mean age of 53.95 years and a male-to-female ratio of 0.85. The most frequent reasons for hospitalization were infectious dermo-hypodermitis (n = 51), autoimmune bullous dermatosis (n = 23), severe drug eruption (n = 20), genodermatosis (n = 17), melanocytic (n = 9) and non-melanocytic skin tumors (n = 17), severe psoriasis (n = 17), cutaneous lymphoma (n = 11), alopecia areata (n = 10), dermatomyositis (n = 8), and Verneuil’s disease (n = 5). The DLQI was impossible to calculate in eleven patients. The mean DLQI in all patients was 10.20, corresponding to a moderate effect on quality of life. The mean DLQI was as follows: Verneuil’s disease at 17.4, severe psoriasis at 16.6, dermatomyositis at 14.42, genodermatosis at 12.37, cutaneous lymphoma at 11.45, severe drug eruption at 11, alopecia areata at 10.5, AIBD at 9.67, skin tumors at 7.76, and infectious dermo-hypodermitis at 7.52. The DLQI was the first index measuring quality of life in dermatology and is still widely used today[2]. The number of publications concerning the impact of dermatological pathologies on quality of life has increased in recent years [3]. Our results showed that the DLQI was higher in patients with Verneuil’s disease, severe psoriasis, and dermatomyositis. These results agree with the data of the literature, many publications have shown that psoriasis seriously impaired the quality of life and was responsible of social anxiety in patients [4]. Verneuil’s disease is also responsible of a significant impairment on quality of life mainly due to the sexual disorders caused by this pathology [5]. Another study on dermatomyositis showed that there is a significant correlation between the severity of skin signs and the quality of life of patients [6]. Dermatological pathologies are distinguished from other pathologies by their displaying character, which is responsible for a significant impact on the patient’s quality of life. The management of dermatology patients requires psychological support in addition to conventional therapy. However, these pathologies are still not recognized as long-term illnesses in Morocco.

The Social and Psychological Impact of Superficial Dermatophytic Infection using Dlqi and Ghq-12: A Cross-Sectional Study in 174 Patients at a Tertiary Care Centre in Southern-East Rajasthan

2021 ◽  
pp. 1-6
Author(s):  
Shivani Saini ◽  
◽  
Agarwal Shail ◽  
Jain Manish ◽  
Yadav Devendra ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychological Impact ◽  
Cross Sectional Study ◽  
World Population ◽  
Sectional Study ◽  
Cross Sectional ◽  
Number Of Patients ◽  
The Mean ◽  
The Impact

Background: Dermatophytosis is a common fungal infection affecting 20-25% of the world population. Aims: Our study was aimed to assess its impact on health-related quality of life(QoL), mental health, and various variables. Materials and Methods: A cross-sectional study was done from April 2019 to September 2019 on 174 patients of dermatophytosis of aged more than 16 years with their informed consent. The impact of infection on the quality of life was assessed by using the Dermatology life quality index questionnaire and General health questionnaire-12 was used to assess psychological impact. A visual analogue scale was used to assess the severity of pruritus. Appropriate statistical tests were applied. Results: Males to females ratio was 1.4:1. The age group of 21-30 was having the highest number of patients with the mean age of 27.8±9.97. Most patients had BSA under 10%. The mean value of DLQI and GHQ-12 were found 15.989±7.407 and 2.8563±2.8964, respectively. We found that dermatophytosis had a very large effect on the quality of life as the maximum number of patients(39%) were within this category. The “work and school” part in the questionnaire gained maximum importance(52.8%). The mean VAS score was 6±2.733 with most patients(32.7%) had moderate itching. We found a positive correlation between VAS and DLQI, VAS and GHQ-12, DLQI, and GHQ-12 with the statistical significance. Conclusion: In our study dermatophytosis affected the quality of life as well as the psychological health of patients. Therefore proper treatment of superficial dermatophtytosis is essential to prevent it from further complications

KUALITAS HIDUP REMAJA YANG MENGALAMI DISMENORE DI SMK NEGERI 2 SUMEDANG

2018 ◽  
Vol 4 (2) ◽  
pp. 129
Author(s):  
Nadya Puspita Dewi ◽  
Tetti Solehati ◽  
Nur Oktavia Hidayati
Keyword(s):  
Quality Of Life ◽  
Sampling Technique ◽  
Mean Value ◽  
Social Dimension ◽  
Validity And Reliability ◽  
School Activities ◽  
Emotional Dimension ◽  
The Mean ◽  
The Impact

Dysmenorrhea is a pain before or during the menstrual period. The impact of dysmenorrhea are the disruption on physical function, emotional, social and school activities and disruption of quality of life. The study purpose is to detect the quality of life of adolescents with dysmenorrhea.The research method was a quantitative descriptive with total sampling technique to 195 students which selected using dysmenorrhea screening. The data were collected using the pediatric quality of life 4.0 generic module (PedsQL) teens report in Indonesian version which the validity and reliability have been tested. Analysis of data has been done to find out the mean value in each dimension and frequency distribution. The results showed that the mean value of the quality of life of adolescents with dysmenorrhea in general was 62,04 ± 8,15 and 51,8% was in the low. The mean value in physical dimension was 49,36 ± 9,19, emotional dimension was 57,62 ± 13,16, social dimension was 86,38 ± 13,28, and in the school dimension was 62,41 ± 14,77. The quality of life in high categories were in the emotional dimension (60,0%), social dimension (64,1%), and school dimension (60,5%). Meanwhile, the quality of life in low category was in the physical dimension (57,4%). It showed that the quality of life of adolescents with dysmenorrhea in SMK Negeri 2 Sumedang were low. It was recommended to the school and the health office in Sumedang district to provide the reproductive health education, specifically about the prevention and the treatment of dysmenorrhea on adolescents.  

Gastrointestinal symptoms of pelvic radiation disease (part 1): literature review

2020 ◽  
Vol 18 (2) ◽  
pp. 40-45 ◽  
Author(s):  
Helen Ludlow ◽  
John Green
Keyword(s):  
Quality Of Life ◽  
Side Effects ◽  
Literature Review ◽  
Patient Experience ◽  
Gastrointestinal Symptoms ◽  
Pelvic Radiation ◽  
Gi Symptoms ◽  
Pelvic Cancer ◽  
The Impact

Radiotherapy used to treat cancers in the pelvic region can have lasting side effects, and the persistence of these symptoms for 3 months or more is described as pelvic radiation disease (PRD). The growing number of pelvic cancer patients being diagnosed and successfully treated is increasing the incidence of PRD. This review examines the literature on the gastrointestinal symptoms of PRD. This includes how PRD is defined, how it is identified and how it relates specifically to the three pelvic cancers in which it most commonly manifests (prostate, gynaecological and colorectal). It pays particular attention to the impact of PRD on patient experience and quality of life. This review is the first part in a series on the GI symptoms of PRD.

scholarly journals Assessment of Septoplasty Outcome using Nasal Obstruction Symptom Evaluation Scale

2019 ◽  
Vol 21 (2) ◽  
pp. 142-146
Author(s):  
Kundan Kumar Shrestha ◽  
R.R. Joshi ◽  
A.S. Rijal ◽  
A. Dhungana ◽  
S. Maharjan
Keyword(s):  
Quality Of Life ◽  
Nasal Obstruction ◽  
Septal Deviation ◽  
Definitive Treatment ◽  
Nose Scale ◽  
Outcome Instrument ◽  
Symptom Evaluation ◽  
The Mean ◽  
Nasal Septoplasty

 Nasal obstruction, the most common presenting symptom in nasal and sinus disease, is defined as patient discomfort manifested as a sensation of insufficient airflow through the nose. Nasal septal deviation is the most common anatomical cause of nasal obstruction. Surgical correction of a deviated septum, nasal septoplasty, is the definitive treatment for septal deviation. Many studies have discussed about outcomes of septoplasty. However, there is limited published literature on nasal septoplasty and its outcome in Nepal. The aim of this study is to evaluate the outcome of septoplasty using Nasal Obstruction Symptom Evaluation (NOSE) scale, a validated outcome instrument assessing quality of life (QoL) related to nasal obstruction. A total of 52 patients aged 18 years and above, with nasal obstruction at least for 3 months, undergoing septoplasty alone were included in the study. Baseline NOSE score was calculated a week before surgery. The patients were followed up after 3 months to record postoperative NOSE score. On statistical analysis, the mean NOSE scores before and 3 months after septoplasty were 45.58±21.38 and 8.46±8.37 respectively. The mean difference was 37.11± 21.22 and p value on paired t test was less than 0.001(highly significant). The mean differences of each component of the NOSE scale questionnaire were also found to be highly significant statistically with p values less than 0.001. Gender and age did not seem to affect the outcomes. In conclusion, NOSE scale is a valid, reliable and responsive instrument that is brief and easy to complete and has potential use for outcome studies in adults with nasal obstruction. This instrument showed that septoplasty, if done in properly selected patients, results in significant improvement in nasal obstruction and disease specific quality of life with high patient satisfaction.

scholarly journals Patient perspectives on the therapeutic profile of botulinum neurotoxin type A in cervical dystonia

2020 ◽  
Author(s):  
Cynthia Comella ◽  
Joaquim J. Ferreira ◽  
Emilie Pain ◽  
Marion Azoulai ◽  
Savary Om
Keyword(s):  
Quality Of Life ◽  
Cervical Dystonia ◽  
Botulinum Neurotoxin ◽  
Type A ◽  
Peak Effect ◽  
Botulinum Neurotoxin Type A ◽  
The Mean ◽  
The Impact ◽  
Therapeutic Profile

Abstract Background Botulinum neurotoxin type A (BoNT-A) is an effective pharmacological treatment for the management of cervical dystonia (CD) that requires repeated administration at variable intervals. We explored patient perceptions of the impact of CD and the waning of BoNT-A therapeutic effects. Methods An internet-based survey was conducted through Carenity, a global online patient community, from May to September 2019. Eligible respondents were adults with CD who had ≥ 2 previous BoNT-A injections. Results 209 respondents (81% females; mean age of 49.7 years) met the screening criteria. The mean BoNT-A injection frequency was 3.9 injections/year. The mean reported onset of BoNT-A therapeutic effect was 11.7 days and the time to peak effect was 4.5 weeks. Symptom re-emergence between injections was common (88%); the time from injection to symptom re-emergence was 73.6 days (~ 10.5 weeks). Treatment was not reported to completely abolish symptoms, even at peak effect. However, symptom severity was rated (0 = no symptoms; 10 = very strong symptoms) as lowest at the peak of treatment effects (mean scores ~ 3/10), increasing as the effects of treatment start waning (~ 5.5/10) and was strongest one day before the next session (~ 7–8/10). The impact of CD on quality of life followed the same ‘rollercoaster’ pattern. Conclusions This survey highlights the burden of CD symptoms, even in patients undergoing regular treatment. Symptom re-emergence is common and has significant impact on daily activities and quality of life. Greater awareness of the therapeutic profile of BoNT-A treatment should lead to better informed therapeutic discussions and planning.

Sign in / Sign up

Export Citation Format

Share Document