scholarly journals Difficulty in Assessing Quality of Life Outcomes in a Fluctuating Disease: A Hypothesis Based on Gastroparesis

2009 ◽  
Vol 2009 ◽  
pp. 1-3 ◽  
Author(s):  
Vic Velanovich
Keyword(s):  
Quality Of Life ◽  
Steady State ◽  
Disease Process ◽  
Preliminary Finding ◽  
Median Number ◽  
Underlying Assumption ◽  
Clinical Encounters ◽  
Idiopathic Gastroparesis ◽  
Clinic Visits

An underlying assumption of quality of life outcome research is that after some intervention a “steady-state” of quality of life is reached which can be identified as an endpoint, and, hence, the “outcome.” However, in some disease processes, no so such steady-state is reached. The hypothesis presented is that a disease process with a waxing and waning course will make it difficult to determine a quality of life endpoint. After clinical observation, a pilot study of patients with either diabetic or idiopathic gastroparesis with gastric neurostimulation their records were reviewed to identify the number of clinic visits, the number of clinic visits in which the patients were asymptomatic, much improved, improved, no change, worse, or much worse. These changes were defined as “transitions.” A “transition ratio” was calculated by dividing the number of transitions by the number of clinic visits. Preliminary results showed that of 32 patients, the median number of clinic encounters was 8 (1–35), and the median number of transitions 4 (0–22). The average transition ration was . In the case of gastroparesis, over half of all clinical encounters were associated with a transition. The implication of the hypothesis and preliminary finding suggests a difficulty to identify when the symptomatic endpoint was reached. Other methods to assess the effects of treatment in such a disease process are required to fully understand the effects of treatment on quality of life.

scholarly journals Health-Related Quality of Life of Patients with Multiple Sclerosis in Oman – A CrossSectional Study

2021 ◽  
Author(s):  
Jansirani Natarajan ◽  
Mickael Antoine Joseph ◽  
Abdullah Al Asmi ◽  
Gerald Amandu Matua ◽  
Jaber Al Khabouri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Process ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Disease Specific

Objectives: Multiple sclerosis is a disabling neurological disorder with significant negative effects on patients’ quality of life. Despite the increased prevalence of multiple sclerosis in Arabian Gulf countries in recent years, no study has assessed the impact of multiple sclerosis on the healthrelated quality of life of Omani patients. Therefore, the objectives of the current study was to assess the impact of multiple sclerosis on the health-related quality of life of Omani patients using the validated disease-specific self-administered MusiQoL instrument. Methods: A cross-sectional descriptive study was carried out between April and December 2019 on 177 Omani patients with multiple sclerosis attending two major hospitals in Oman. Patients’ health-related quality of life was assessed using the validated disease-specific self-administered MusiQoL instrument. Results: Majority (51.4%) of the patients had poor HRQOL and 48.6% had moderate HRQOL. We found that being older than 30 years, a female, married, separated, widowed, or divorced, and having visual and sleep problems had poorer health-related quality of life. Among the different health-related quality of life components, relationship with the healthcare system and relationship with family and friends were the most affected because of the disease process. Our results also showed that psychological well-being and coping domains of MusiQoL questionnaires are significantly reduced in females as compared to males. Conclusion: Understanding the health-related quality of life of Omanis with multiple sclerosis provides valuable knowledge that could help optimize the management of this disease.

scholarly journals Quality of life of patients living with psoriasis: a qualitative study

2020 ◽  
Author(s):  
silmara Meneguin ◽  
Natalia Godoy ◽  
Camila Fernandes Pollo ◽  
Helio Amante Miot ◽  
Cesar Oliveira
Keyword(s):  
Quality Of Life ◽  
Stress Reduction ◽  
Financial Stability ◽  
Social Stigma ◽  
Public Awareness ◽  
Disease Process ◽  
Multidisciplinary Care ◽  
Well Being ◽  
Professional Activities

Abstract Background: Psoriasis is a multifactorial inflammatory disease prevalent in dermatology. We aimed to understand the perceptions of patients living with psoriasis in relation to their quality of life and to identify aspects to improve it. Methods: This is qualitative research carried out in a dermatology outpatient clinic of the São Paulo State University (UNESP) medical school, Botucatu, Brazil, with 81 psoriasis patients. The interviews were transcribed and analysed using the Discourse of the Collective Subject method (DCS). Results: Quality of life was linked to well-being, happiness, leisure, good food and financial stability. However, disease symptoms, social and clothing restrictions, impairment of professional activities and the absence of a cure, negatively influenced their perceptions. Suggestions for improvements included an increase of public awareness, stress reduction, disease acceptance and multidisciplinary care. Conclusion: The meanings of quality of life revealed by the participants are subjective, multidimensional, linked to moments experienced by them and to the health-disease process. Public health policies promoting reduction in social stigma and stress as well as multidisciplinary approaches towards care can contribute to improvements of QoL in psoriasis.

scholarly journals Quality of life of patients living with psoriasis: a qualitative study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Silmara Meneguin ◽  
Natália Aparecida de Godoy ◽  
Camila Fernandes Pollo ◽  
Hélio Amante Miot ◽  
Cesar de Oliveira
Keyword(s):  
Quality Of Life ◽  
Stress Reduction ◽  
Financial Stability ◽  
Social Stigma ◽  
Public Awareness ◽  
Disease Process ◽  
Multidisciplinary Care ◽  
Well Being ◽  
Professional Activities

Abstract Background Psoriasis is a multifactorial inflammatory disease prevalent in dermatology. We aimed to understand the perceptions of patients living with psoriasis in relation to their quality of life and to identify aspects to improve it. Methods This is qualitative research carried out in a dermatology outpatient clinic of the São Paulo State University (UNESP) medical school, Botucatu, Brazil, with 81 psoriasis patients. The interviews were transcribed and analysed using the Discourse of the Collective Subject method (DCS). Results Quality of life was linked to well-being, happiness, leisure, good food and financial stability. However, disease symptoms, social and clothing restrictions, impairment of professional activities and the absence of a cure, negatively influenced their perceptions. Suggestions for improvements included an increase of public awareness, stress reduction, disease acceptance and multidisciplinary care. Conclusion The meanings of quality of life revealed by the participants are subjective, multidimensional, linked to moments experienced by them and to the health-disease process. Public health policies promoting reduction in social stigma and stress as well as multidisciplinary approaches towards care can contribute to improvements of QoL in psoriasis.

Phase II Study of Vinorelbine in Patients With Malignant Pleural Mesothelioma

2000 ◽  
Vol 18 (23) ◽  
pp. 3912-3917 ◽  
Author(s):  
Jeremy P. C. Steele ◽  
Jonathan Shamash ◽  
Marie T. Evans ◽  
Nicole H. Gower ◽  
Marc D. Tischkowitz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Malignant Pleural Mesothelioma ◽  
Stage Iv ◽  
Staging System ◽  
Median Number ◽  
Response To Treatment ◽  
Pleural Mesothelioma ◽  
Stage Iv Disease ◽  
New Guidelines

PURPOSE: To evaluate the response rate and impact on quality of life of vinorelbine given as cycles of 30 mg/m2 weekly for 6 weeks to patients with malignant pleural mesothelioma. PATIENTS AND METHODS: Twenty-nine patients with histologically proven malignant pleural mesothelioma were enrolled (26 male patients and three female patients; median age, 58 years [range, 29 to 77 years]). Seventeen patients had epithelioid tumors, two had sarcomatoid tumors, and 10 had biphasic tumors. The International Mesothelioma Interest Group staging system was used: one patient had stage Ib disease, 10 had stage II disease, eight had stage III disease, and 10 had stage IV disease. Patients were treated with weekly injections of vinorelbine 30 mg/m2. A cycle consisted of six weekly injections. The new guidelines to evaluate the response to treatment in solid tumors were used. Responses were measured by spiral computed tomography scan. RESULTS: All twenty-nine patients had measurable disease and were assessed for response. There were seven partial responses (24% [95% confidence interval, 10% to 44%]), 16 patients had stable disease (55%), and six patients had disease progression on therapy (21%). The median number of vinorelbine injections was 12 (range, 2 to 30). Quality-of-life analyses showed a benefit for vinorelbine therapy. CONCLUSION: Vinorelbine shows promise in the palliation of patients with malignant pleural mesothelioma. The relatively low toxicity of the drug suggests that trials of vinorelbine in combination with other agents should be feasible.

P026 TOP GOALS AND CONCERNS REPORTED BY INDIVIDUALS WITH INFLAMMATORY BOWEL DISEASE AT OUTPATIENT GASTROENTEROLOGY CLINIC VISITS

2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S57-S57
Author(s):  
Chung Sang Tse ◽  
Samir Shah ◽  
Damara Crate ◽  
Ridhima Oberai ◽  
Caroline Hwang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Side Effects ◽  
Bowel Disease ◽  
Clinical Course ◽  
Cost Of Care ◽  
Psychosocial Effects ◽  
Inflammatory Bowel ◽  
Clinic Visits

Abstract Background The goals of managing inflammatory bowel disease (IBD) include eliminating disease symptoms, improving quality of life, and preventing disease progression/complications. In patients with chronic illnesses, their perception of the illness, emotional reactions, and concerns about the disease/treatment can influence self-management behaviors and their quality of life.[1] Studies of IBD patients’ self-reported disease concerns and subjective perceptions of quality of life are lacking. Here, we aim to understand IBD patients’ top concerns and goals using survey data collected within IBD Qorus, a nationwide Learning Health System for IBD with approximately 40 participating sites. Methods We conducted a qualitative content analysis on an open-ended question that was sent to IBD patients prior to their clinic visits with an IBD Qorus provider: “Currently, what is your number ONE concern or goal related to your IBD? This could be related to a specific symptom (e.g., diarrhea), worry for the future (e.g., need for surgery, cost of care) or how IBD might impact an upcoming life event (e.g., wedding, travel). Or you can report that you have no current concerns or goals.” Using the inductive approach, two independent researchers (who are not involved with direct clinical care of IBD Qorus patients) coded the responses into major and minor themes, which were then discussed with a third independent coder (an IBD Qorus provider). Each response received one or more codes (if multiple themes were mentioned). Results In the first 100 responses from a purposeful sample of six IBD Qorus sites (3 academic and 3 community sites in diverse rural and urban geographic locations), four domains of goals/concerns were identified: symptoms and goals for the symptoms (28/100), medication and their efficacy/side effects (28/100), IBD clinical course and management (29/100), and psychosocial effects of IBD (29/100) (Figure 1). The most common themes in each domain were: abdominal pain and fecal urgency (symptoms), biologics and side effects (medications), surgery and nutrition (IBD clinical course and management), and fear/worry and traveling (psychosocial effects) (Figure 1). Fives responses contained no concerns/goals and three were uncodeable. Conclusion IBD patients’ disease-related concerns and goals are broad and diverse, and our study suggests that they are evenly distributed between symptoms, medications, disease course, and psychosocial effects. Understanding patients’ perceptions about the disease and the types of information they desire can aid providers to create and achieve shared treatment goals. Reference

Compliance of subjects using electronic patient-reported outcomes (ePRO) in multinational prostate trials.

2014 ◽  
Vol 32 (4_suppl) ◽  
pp. 232-232
Author(s):  
Susan M. Dallabrida
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Clinical Trials ◽  
Patient Reported Outcomes ◽  
Short Form ◽  
Quality Data ◽  
Data Set ◽  
Patient Reported ◽  
Clinic Visits

232 Background: Patient Reported Outcomes (PRO) and electronic PRO (ePRO) are increasingly becoming an important aspect of cancer clinical trials and patient care, especially with regard to measuring drug efficacy, patient quality of life and drug safety. Subject compliance with completion of PRO/ePRO assessments is an important component for obtaining accurate and high-quality data when conducting clinical trials. It has been hypothesized that patient health status, length of time in a trial and country of origin, may affect compliance. Methods: To address this hypothesis, an operational analysis was conducted to assess oncology subject completion compliance of PRO reports using an electronic tablet to determine its suitability and performance in use. Toward this objective, the compliance of prostate cancer patients in completing three electronic questionnaires that were administered at clinic visits was evaluated. Subjects were asked to complete the Brief Pain Inventory – Short Form (BPI-SF) at every clinic visit. At some clinic visits, subjects were asked to additionally complete the Functional Assessment of Cancer Therapy – Prostate (FACT-P) and the Euro Quality of Life 5 Dimensions (EQ-5D). Questionnaires were completed electronically on the tablet. Percent completion was calculated as the number of questionnaires completed divided by the number of questionnaires expected, based on attended clinic visits compiled for this review and the administration schedule for the questionnaires. Results: This review draws on the experience of over 1,000 subjects from 21 countries, and describes the individual and overall compliance with the expected questionnaire completion, the variance between subsequent visits, and compliance by country. Conclusions: The collection of ePRO using a clinic-based tablet yielded a highly complete data set in prostate cancer subjects demonstrating that this is an effective and feasible approach for recording symptoms and quality of life assessments.

Characteristics of Nausea and Its Effects on Quality of Life in Diabetic and Idiopathic Gastroparesis

2011 ◽  
Vol 45 (4) ◽  
pp. 317-321 ◽  
Author(s):  
Jane K. Jaffe ◽  
Susmita Paladugu ◽  
John P. Gaughan ◽  
Henry P. Parkman
Keyword(s):  
Quality Of Life ◽  
Idiopathic Gastroparesis

scholarly journals Die identifisering van ’n geskikte vraelys vir die bepaling van lewenskwaliteit by Suid-Afrikaanse vroue met servikskanker

2015 ◽  
Vol 34 (1) ◽  
Author(s):  
George Du Toit
Keyword(s):  
Quality Of Life ◽  
Cervical Cancer ◽  
South African ◽  
Objective Assessment ◽  
Disease Process ◽  
Hiv And Aids ◽  
African Women ◽  
Chronic Illness Therapy ◽  
South African Women

Cervical cancer is one of the commonest cancers among South African women. In the absence of an adequate, preventative cervical cytology programme, the majority of women present with an advanced stage of disease. Despite treatment, the prognosis for these women is poor. Furthermore, HIV and AIDS impacts adversely on the treatment of cervical cancer, whereas cervical cancer and its treatment again affect the quality of life. Objective assessment of the quality of life can improve treatment and supportive care. The current study was done to identify the most appropriate questionnaire to assess the quality of life experienced by South African women with cervical cancer. The European Organisation for the Research and Treatment of Cancer (EORTC) and the Functional Assessment of Chronic Illness Therapy Measurement System (FACIT) questionnaires are the most commonly used for assessment of the quality of life patients with cancer have. The current study assessed the appropriateness of these questionnaires for use in South Africa on the following criteria: study structure (prospective or transverse), quality of life endpoint (primary or secondary), timing of assessment during disease process and the nationalities of the study populations. The EORTC questionnaire was identified as the most appropriate for application to South African women with cervical cancer.

scholarly journals Análisis de la situación de salud en Cerro Guayabal

2017 ◽  
Vol 1 (1) ◽  
pp. 29
Author(s):  
Yira Annabell Vásquez Giler ◽  
Alina González Hernández ◽  
Paula Salomé Macías Moreira ◽  
Olimpia Victoria Carrillo Farnés
Keyword(s):  
Quality Of Life ◽  
Teaching Practice ◽  
Life Quality ◽  
Disease Process ◽  
Health State ◽  
Cross Sectional ◽  
Calidad De Vida ◽  
Critical Issues ◽  
Quality Health

El Análisis de Situación de Salud es una herramienta que busca mejorar la salud y calidad de vida de poblaciones. Se diseñó una investigación transversal, descriptiva; con doble propósito: relacio- nar condiciones de vida y comportamiento del proceso salud y enfermedad en la comunidad Cerro de Guayabal y realizar ejercicio práctico-docente con estudiantes del quinto semestre de Medicina. Se encuestaron 266 familias, 1134 personas (91%) de la población total. El 71% solo alcanza nivel de formación primaria. Más de la mitad tiene viviendas en condiciones regulares y cultura sanita- ria entre regular y mal. El 87% no tiene necesidades básicas cubiertas. Más del 50% son familias disfuncionales. El 56% se dispensarizó de riesgo y 11% enfermos. Dada las condiciones de vida y ausencia de centro de salud parece existir morbilidad oculta. Existe riesgo de accidentes de tránsito y laboral. Resultó un tema crítico la recolección de residuos, el acceso a agua potable y la conta- minación ambiental. Existe imperiosa necesidad de intervenciones de salud para mejorar el estado de salud y calidad de vida de esta comunidad. Palabras clave: calidad de vida, estado de salud, salud pública. Abstract: The Health Situation Analysis is a tool that seeks to improve the health and quality of life of pop- ulations. A cross-sectional descriptive study was designed; with dual purpose: to relate living con- ditions and health behavior and disease process in the Cerro de Guayabal community and make practical-teaching practice with students of the fifth semester of Medicine. 266 families, 1134 people (91%) of the total population were surveyed. Only 71% reached primary level. More than half are in regular housing conditions and health culture fair to poor. 87% do not cover basic needs. More than 50% are dysfunctional families. 56% were risk dispensary and 11% were sick. Given the living conditions and lack of health center it seems to be hidden morbidity. There is a risk of traffic and labor accidents. Waste collection, access to drinking water and environmental pollution were critical issues. There is an urgent need for health interventions to improve the health state and quality of life of this community. Key words: life quality, health state, public health.

scholarly journals Quality of life, burden of treatment, safety, and avoidance of future events (QBSAfe) protocol: a pilot study testing an intervention to shift the paradigm of diabetes care

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Jennifer E. Clark ◽  
Kasey R. Boehmer ◽  
Maggie Breslin ◽  
Shanzay Haider ◽  
Weronika Pasciak ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Diabetes Care ◽  
Patient Needs ◽  
Burden Of Treatment ◽  
Link Type ◽  
Clinical Encounters ◽  
Future Events ◽  
Treatment Safety

Abstract Background Diabetes care has been traditionally focused on targeting certain levels of glycemic control. This narrow emphasis may impose burdens on patients, including high treatment costs, illness-related work, or side effects from medications, while leaving other patient needs and goals under-addressed. The authors aim to shift the paradigm of care for people with diabetes, to focus on quality of life, burden of treatment, safety, and avoidance of future events: the QBSAfe domains. Methods We describe a single-arm pilot study to assess the feasibility and acceptability of using the QBSAfe agenda setting kit (ASK) during routine clinical visits. The set of 14 conversation aid cards was co-developed with patients, family caregivers, and clinicians. The ASK will be used in the context of a clinic visit, which will be recorded by members of the study team to identify patterns of clinician-patient conversations. Feasibility will be measured by the number of participants recruited, time to goal accrual, and completeness of data collection; acceptability will be assessed using post-visit surveys of patients and clinicians. A subgroup of patients will be invited to participate in post-visit qualitative semi-structured interviews for additional feedback. This study will be conducted across three medical centers in the Midwest and East Coast of the USA. Discussion Current healthcare infrastructure and associated demands and pressures on clinicians make changes in care difficult. However, this intervention has the potential to shift conversations during clinical encounters so they can address and directly respond to patient needs, symptoms, and capacity. As part of the QBSAfe ASK, the authors are also actively collaborating with a variety of stakeholders to create tools to help clinicians respond more effectively to patient concerns as they are raised during the clinical encounters. Additional insights about the use of the QBSAfe approach in the virtual space will be gathered during the process of our study due to restrictions imposed upon face to face visit during the COVID-19 pandemic. Trial registration ClinicalTrials.gov, NCT04514523. Registered 17 August 2020—retrospectively registered.

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