scholarly journals Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries

Sarcoma ◽  
2020 ◽  
Vol 2020 ◽  
pp. 1-9
Author(s):  
Milea J. M. Timbergen ◽  
Winette T. A. van der Graaf ◽  
Dirk J. Grünhagen ◽  
Eugenie Younger ◽  
Stefan Sleijfer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Tumour Growth ◽  
The Body ◽  
Soft Tissue Tumour ◽  
Health Related Quality ◽  
Hrqol Questionnaire ◽  
Tissue Tumour ◽  
Related Quality ◽  
Health Related

Purpose. Desmoid-type fibromatosis (DTF) is a rare, nonmetastasising soft tissue tumour. Symptoms, unpredictable growth, lack of definitive treatments, and the chronic character of the disease can significantly impact health-related quality of life (HRQoL). We aimed at identifying the most important HRQoL issues according to DTF patients in two countries, in order to devise a specific HRQoL questionnaire for this patient group. Methods. DTF patients and healthcare providers (HCPs) from the Netherlands and the United Kingdom individually ranked 124 issues regarding diagnosis, treatment, follow-up, recurrence, living with DTF, healthcare, and supportive care experiences, according to their relevance. Descriptive statistics were used to calculate priority scores. Results. The most highly ranked issues by patients (n = 29) were issues concerning “tumour growth,” “feeling that there is something in the body that does not belong there,” and “fear of tumour growth into adjacent tissues or organs” with mean (M) scores of 3.0, 2.9, and 2.8, respectively (Likert scale 1–4). British patients scored higher on most issues compared to Dutch patients (M 2.2 vs. M 1.5). HCPs (n = 31) gave higher scores on most issues compared to patients (M 2.3 vs. M 1.8). Conclusion. This study identified the most relevant issues for DTF patients, which should be included in a DTF-specific HRQoL questionnaire. Additionally, we identified differences in priority scores between British and Dutch participating patients. Field testing in a large, international cohort is needed to confirm these findings and to devise a comprehensive and specific HRQoL questionnaire for DTF patients.

scholarly journals The Evaluation of Health-Related Quality of Life Issues Experienced by Patients with Desmoid-Type Fibromatosis (The QUALIFIED Study)—A Protocol for an International Cohort Study

Cancers ◽  
2021 ◽  
Vol 13 (13) ◽  
pp. 3068
Author(s):  
Anne-Rose W. Schut ◽  
Milea J. M. Timbergen ◽  
Emma Lidington ◽  
Dirk J. Grünhagen ◽  
Winette T. A. van der Graaf ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Soft Tissue Tumour ◽  
Health Related Quality ◽  
Tissue Tumour ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Sporadic desmoid-type fibromatosis (DTF) is a rare soft tissue tumour with an unpredictable clinical course. These tumours are incapable of metastasising, but their local aggressive tumour growth and tendency to recur locally can result in a substantial symptom burden. Measuring the impact of DTF on health-related quality of life (HRQoL) can be challenging due to the variable clinical presentation of the disease. Therefore, a HRQoL instrument assessing DTF-specific issues is needed. The QUALIFIED study aims to (1) pre-test a previously developed DTF-specific HRQoL tool (the DTF-QoL); (2) evaluate prevalence of HRQoL issues in adult DTF patients; and (3) identify subgroups at risk of impaired HRQoL. This study (NCT04289077) is an international, multicentre, cross-sectional, observational cohort study. Patients ≥ 18 years with sporadic DTF from the Netherlands and the United Kingdom will be invited to complete a set of questionnaires specifically composed for this patient group. Questionnaires will be completed using PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship). Analyses will include testing the psychometric properties of the DTF-QoL and evaluating the prevalence of HRQoL issues using the DTF-QoL, EORTC QOL-C30 and EQ-5D-5L, among other questionnaires. This study will provide insight into HRQoL issues experienced by patients with DTF. Awareness of these issues and the implementation of the DTF-QoL in research and clinical practice can help to improve overall HRQoL and to provide personalised care.

scholarly journals Differences in exercise capacity and health-related quality of life according to the body mass index in patients with COPD

Pulmonology ◽  
2021 ◽  
Author(s):  
Jhonatan Betancourt-Peña ◽  
Juan Carlos Ávila-Valencia ◽  
Diana Milena Diaz-Vidal ◽  
Vicente Benavides-Córdoba
Keyword(s):  
Quality Of Life ◽  
Body Mass Index ◽  
Exercise Capacity ◽  
Body Mass ◽  
The Body ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals The assessment of health-related quality of life in relation to the body mass index value in the urban population of Belgrade

2008 ◽  
Vol 6 (1) ◽  
pp. 106 ◽  
Author(s):  
Nadja Vasiljevic ◽  
Sonja Ralevic ◽  
Jelena Marinkovic ◽  
Nikola Kocev ◽  
Milos Maksimovic ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Body Mass Index ◽  
Body Mass ◽  
Urban Population ◽  
The Body ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Index Value

scholarly journals Assessment of health related quality of life of asthma patients in a tertiary care teaching hospital

2019 ◽  
Vol 6 (2) ◽  
pp. 654
Author(s):  
Shrishailgouda S. Patil ◽  
Archana Oggu ◽  
Shravan Jayachandran ◽  
Neha Patil ◽  
H. Doddayya
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Hrqol Questionnaire ◽  
Asthma Patients ◽  
Related Quality ◽  
Health Related ◽  
Mental Hrqol ◽  
The Mean ◽  
Physical Hrqol

Background: The present study is planned to assess the health related quality of life (HRQoL) in asthma patients by using HRQoL questionnaire (SF-36 v2).Methods: A prospective observational study was conducted for a period of 6 months (September 2017 to February 2018) in Navodaya Medical College Hospital and Research Centre, Raichur on a total of 108 patients of either sex suffering from persistent asthma. The HRQoL of asthma patients was measured by face-to-face interview using HRQoL questionnaire (SF-36v2).Results: Female patients were found to be more affected with asthma compared to male patients and the prevalence of asthma is found to be more in the middle aged and elderly patients compared to adults. The important triggering factors for the asthma were found to be exposure to dust, smoking, alcohol and cooking fuel. The mean physical component summary (PCS) scores is 47.46 (±15.56) and the mean mental component summary (MCS) scores is 66.73 (±13.59). The findings of our study reveals that the physical HRQoL is more affected compared to mental HRQoL as revealed by PCS and MCS scores.Conclusions: The findings of our study conclusively suggest that the physical HRQoL is more affected than mental HRQoL in asthma patients and also the need to improve the quality of life in these patients by appropriate patient education regarding the triggering factors of asthma, preventive measures and the medication adherence.

scholarly journals Mobile App Delivery of the EORTC QLQ-C30 Questionnaire to Assess Health-Related Quality of Life in Oncological Patients: Usability Study (Preprint)

2017 ◽  
Author(s):  
Kerstin A Kessel ◽  
Marco M E Vogel ◽  
Anna Alles ◽  
Sophie Dobiasch ◽  
Hanna Fischer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mobile Apps ◽  
Usability Study ◽  
Health Related Quality ◽  
Hrqol Questionnaire ◽  
Oncological Patients ◽  
Related Quality ◽  
Health Related ◽  
Hrqol Assessment

BACKGROUND Mobile apps are evolving in the medical field. However, ongoing discussions have questioned whether such apps are really valuable and whether patients will accept their use in day-to-day clinical life. Therefore, we initiated a usability study in our department. OBJECTIVE We present our results of the first app prototype and patient testing of health-related quality of life (HRQoL) assessment in oncological patients. METHODS We developed an app prototype for the iOS operating system within eight months in three phases: conception, initial development, and pilot testing. For the HRQoL assessment, we chose to implement only the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Core 30 (QLQ-C30; German version 3). Usability testing was conducted for three months. Participation was voluntary and pseudonymized. After completion of the QLQ-C30 questionnaire using iPads provided by our department, we performed a short survey with 10 questions. This survey inquired about patients’ opinions regarding general aspects, including technical advances in medicine, mobile and app assistance during cancer treatment, and the app-specific functions (eg, interface and navigation). RESULTS After logging into the app, the user can choose between starting a questionnaire, reviewing answers (administrators only), and logging out. The questionnaire is displayed with the same information, questions, and answers as on the original QLQ-C30 sheet. No alterations in wording were made. Usability was tested with 81 patients; median age was 55 years. The median time for completing the HRQoL questionnaire on the iPad was 4.0 minutes. Of all participants, 84% (68/81) owned a mobile device. Similarly, 84% (68/81) of participants would prefer a mobile version of the HRQoL questionnaire instead of a paper-based version. Using the app in daily life during and after cancer treatment would be supported by 83% (67/81) of participants. In the prototype version of the app, data were stored on the device; in the future, 79% (64/81) of the patients would agree to transfer data via the Internet. CONCLUSIONS Our usability test showed good results regarding attractiveness, operability, and understandability. Moreover, our results demonstrate a high overall acceptance of mobile apps and telemedicine in oncology. The HRQoL assessment via the app was accepted thoroughly by patients, and individuals are keen to use it in clinical routines, while data privacy and security must be ensured.

scholarly journals The Burden of Pharmacological Treatment on Health-Related Quality of Life in People with a Urea Cycle Disorder – A Qualitative Study

2020 ◽  
Author(s):  
Gillian Yeowell ◽  
Danielle Burns ◽  
Francis Fatoye
Keyword(s):  
Quality Of Life ◽  
Psychological Health ◽  
Pharmacological Treatment ◽  
Urea Cycle ◽  
The Body ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Background Urea cycle disorders (UCD) are a group of conditions of inborn errors of metabolism, typically presenting neonatally. Excess ammonia builds rapidly within the body, risking hyperammonemic episodes and potentially death. Long-term management of the condition includes restrictive protein consumption, pharmacological interventions and, in extreme cases, liver transplantation. Pharmacological treatments such as sodium benzoate and sodium phenylbuturate have proven effective but not without a multitude of negative attributes including poor taste, elevated volume and associated gastrointestinal discomfort that impacts on health-related quality of life. Glycerol phenylbutyrate (GPB) has recently become a widely available pharmacological treatment with early reports of improved qualities. The following study aims to explore the burden of pharmacological treatment on health-related quality of life in people with a UCD. Results 9 carers of people living with a UCD were interviewed regarding their experiences of pharmacological treatment in relation to their, and their dependent’s health-related quality of life after transitioning to GPB. Three main themes were identified following data analysis: psychological health, physical health and social participation. Carers struggled with anxiety surrounding their dependent’s condition and the relentless battle of administering medication. Medication administration was perceived to have improved since the transition to GPB, alleviating distress for both carer and dependent. Issues involving schooling were commonly described, ranging from difficulties integrating their dependent into mainstream schooling and the impact of treatment on participation in school and extracurricular activities. Based upon participant’s experiences, it could be suggested that some burden had been relieved by the transition to GPB. However, it appeared that the burden would persist despite treatment, owing to the continuing nature of the condition. Conclusions Adhering to a strict pharmacological regime caused immense stress for both carers and dependents, severely impacting on typical social activities such as eating at a restaurant or going on holiday. GPB was perceived to have alleviated some burden in terms of administration. Practitioners should consider these findings when making clinical decisions for UCD patients and the effect of pharmacological treatment on health-related quality of life. Emotional support resources should be made readily available to families to assist with daily living.

scholarly journals The Relationship between Weight Status, Health-Related Quality of Life, and Life Satisfaction in a Sample of Spanish Adolescents

2020 ◽  
Vol 17 (9) ◽  
pp. 3106
Author(s):  
José Ignacio Baile ◽  
Raquel María Guevara ◽  
María José González-Calderón ◽  
José David Urchaga
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Weight Status ◽  
Normal Weight ◽  
The Body ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Relationship

Excess weight has been associated with numerous psychosocial problems and is considered to be one of the most important health problems of today. The aim of this study is to analyze the relationship between weight status, which is evaluated by means of the body mass index (BMI), and the health-related quality of life (HRQoL) and life satisfaction (LS) variables in Spanish adolescents, as well as to examine whether gender influences this interrelationship. A total of 1197 subjects studying in their 1st and 4th years of high school (mean age: 14.4 years, SD: 1.69) participated in the study by completing the Health Behavior in School-Aged Children (HBSC) questionnaire. Then, the participants were grouped into the following categories: underweight, normal weight, overweight, and obese. The results show that boys have significantly higher HRQoL as well as higher levels of LS. On the other hand, only the obese group shows significantly lower scores in both HRQoL and LS than those in the normal-weight group. The interaction of weight category and gender does not have a significant impact on the variables that have been analyzed (HRQoL or LS).

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