Myeloma Treatment Side Effects and Unmet Patient Needs 2009: Results of An International Comparative Survey Conducted by Myeloma Euronet (ME), the European Network of Myeloma Patient Groups.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 4900-4900
Author(s):  
Anita Waldmann ◽  
Begoña Barragán ◽  
Viorica Cursaru ◽  
Candy Heberlein ◽  
Miroslav Hrianka ◽  
...  
Keyword(s):  
Side Effects ◽  
Healthcare Professionals ◽  
Conflicts Of Interest ◽  
Treatment Plan ◽  
Well Being ◽  
Treatment Side Effects ◽  
Comparative Survey ◽  
International Comparative ◽  
The Impact

Abstract Abstract 4900 Recent advances in the treatment of multiple myeloma have increased response rates and treatment outcomes and raised hopes that myeloma may soon be turned into a chronic disease. However, myeloma treatment is often associated with various side effects that can sometimes have a significant impact on the quality of life of myeloma patients and also affect the overall treatment plan. An international comparative survey of myeloma patients and patient relatives and healthcare professionals is conducted to assess perceptions of how myeloma patients are informed about potential side effects of myeloma treatment options, the impact of treatment side effects on a myeloma patient's overall well-being and on the course of myeloma treatment, the satisfaction concerning the management of treatment side effects, potential side effects that myeloma patients don't feel comfortable reporting to their doctor as well as potential reasons for not reporting them, and the satisfaction concerning access to information and support, access to novel treatments, coverage of treatment costs, overall quality of treatment and care, and psycho-social and emotional support. The comparative survey is conducted based on 2 comparable two-page questionnaires, 1 for healthcare professionals and 1 for myeloma patients and patient relatives. The survey consists of 9 multiple-choice and ranking format questions. The questionnaires were developed by ME. They were pre-tested with both professional and patient communities and are available in 6 languages: DE, EN, ES, FR, IT, PL. The survey is distributed by mail or e-mail, it can be taken online via accessing the organisation's web site, and it is conducted on paper at haematological and oncological congresses and patient information days. To date, a total of 272 healthcare professionals from 44 countries and 257 myeloma patients and patient relatives from 21 countries have responded to the survey. Data gathering will continue until mid OCT 2009 and final survey results will be presented at ASH 2009. The survey was made possible through an unrestricted grant from Ortho Biotech, Biopharmaceutical Division of Janssen-Cilag. Disclosures No relevant conflicts of interest to declare.

Myeloma Treatment Compliance 2009: Results of An International Comparative Survey Conducted by Myeloma Euronet (ME), the European Network of Myeloma Patient Groups.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 4907-4907
Author(s):  
Anita Waldmann ◽  
Begoña Barragán ◽  
Viorica Cursaru ◽  
Candy Heberlein ◽  
Miroslav Hrianka ◽  
...  
Keyword(s):  
Patient Compliance ◽  
Healthcare Professionals ◽  
Conflicts Of Interest ◽  
Treatment Plan ◽  
Data Gathering ◽  
Treatment Compliance ◽  
Myeloma Patient ◽  
Treatment Plans ◽  
Comparative Survey ◽  
International Comparative

Abstract Abstract 4907 Patients who follow all the instructions about a course of treatment as directed by their doctor or nurse can be described as ‘compliant’ with a treatment plan. It is well-understood that failure of patients to follow treatment plans or understand the requirements after leaving their care could result in poor treatment outcomes, compounding health problems and additional health care costs. An international comparative survey of myeloma patients and patient relatives and healthcare professionals is conducted to assess perceptions of how myeloma treatment plans are determined, the familiarity of myeloma patients with their treatment plan, the satisfaction concerning the level of treatment compliance-related information, the factors that might have a negative effect on treatment compliance, the effect of one exemplary treatment side effect (peripheral neuropathy) on treatment compliance, and overall myeloma treatment compliance. The goal of the survey is to help patient and medical communities recognise the importance of patient compliance and the issues and challenges patients face in complying with their treatment. Learnings from the survey will be used to help improve myeloma patient compliance. The comparative survey is conducted based on 2 comparable two-page questionnaires, 1 for healthcare professionals and 1 for myeloma patients and patient relatives. The survey consists of 9 multiple-choice and ranking format questions. The questionnaires were developed by ME. They were pre-tested with both professional and patient communities and are available in 6 languages: DE, EN, ES, FR, IT, TR. The survey is distributed by mail or e-mail, it can be taken online through accessing the organisation's web site, and it is conducted on paper at haematological and oncological congresses and patient information days. To date, a total of 129 healthcare professionals from 42 countries and 191 myeloma patients and patient relatives from 11 countries have responded to the survey. Data gathering will continue until mid OCT 2009 and the final survey results will be presented at ASH 2009. The survey was made possible through an unrestricted grant from Celgene International. Disclosures No relevant conflicts of interest to declare.

scholarly journals The Development of Ethnographic Drama to Support Healthcare Professionals

2018 ◽  
Vol 25 (1) ◽  
pp. 1-14 ◽  
Author(s):  
Lisen Dellenborg ◽  
Margret Lepp
Keyword(s):  
Healthcare Professionals ◽  
Well Being ◽  
Professional Relationships ◽  
Action Research Project ◽  
Swedish Medical ◽  
Professional Conflicts ◽  
The Impact ◽  
Working Situation ◽  
Organisational Cultures

AbstractThis article describes the development of ethnographic drama in an action research project involving healthcare professionals in a Swedish medical ward. Ethnographic drama is the result of collaboration between anthropology and drama. As a method, it is suited to illuminating, addressing and studying professional relationships and organisational cultures. It can help healthcare professionals cope with inter-professional conflicts, which have been shown to have serious implications for individual well-being, organisational culture, quality of care and patient safety. Ethnographic drama emerges out of participants’ own experiences and offers them a chance to learn about the unspoken and embodied aspects of their working situation. In the project, ethnographic drama gave participants insight into the impact that structures might have on their actions in everyday encounters on the ward.

Quality of life intervention for men with biochemical recurrence of prostate cancer

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 18585-18585
Author(s):  
W. Tan ◽  
S. Ames ◽  
A. Gretchen ◽  
R. Stone ◽  
T. Rizzo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Side Effects ◽  
Biochemical Recurrence ◽  
Research Approach ◽  
Treatment Needs ◽  
Treatment Side Effects ◽  
Psa Testing ◽  
The Impact

18585 Background: The Quality of life (QOL) and psychosocial needs of the 30–40% of prostate cancer patients who experience biochemical recurrence are not known. The impact of having a rising PSA, anticipation of undergoing PSA testing, and living with prostate cancer may increase psychological distress and decrease QOL. Aim: to evaluate the psychosocial treatment needs of men with biochemical recurrence of prostate cancer (br-PCa) and to develop a treatment to address these needs. Methods: 28 men with br-PCa, 58–87 years, were enrolled. A qualitative research approach was used, consisting of six, 2 hour, semi-structured, focus groups containing 4–6 men per group. Data were content coded and grouped into categories following the structure of the focus group guide. The major conceptual themes were then summarized by 2 independent reviewers. Discrepancies were discussed with a third researcher until a consensus was reached. These results were used to guide development of a multi-disciplinary quality of life intervention. Results: Participants defined QOL as the ability to stay active both physically and mentally without limitation in the performance of usual activities. There was a consensus that prostate cancer led to substantial anxiety related to PSA testing, treatment side effects, and fear of recurrence. Participants were enthusiastic about receiving adjuvant multidisciplinary treatment for prostate cancer focusing on anxiety management, nutrition, exercise, management of treatment side effects, and medical education. Participants desired a male group leader and feedback was mixed regarding whether spouses should be involved. Conclusions: Men with br-PCa report experiencing substantial anxiety and were enthusiastic about receiving a structured intervention to these needs. Based on our findings an intervention has been developed and is currently being compared to usual care. No significant financial relationships to disclose.

Do drugs that offer PFS or modest OS benefits improve quality of life in patients with advanced cancer?

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 223-223
Author(s):  
Lesley Fallowfield ◽  
Susan L. Catt ◽  
Shirley F May ◽  
Valerie M Shilling ◽  
Lucy A Matthews ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Side Effects ◽  
Symptom Burden ◽  
Cancer Control ◽  
Progression Free Survival ◽  
Well Being ◽  
Treatment Side Effects ◽  
Time Interaction ◽  
Group B

223 Background: Patients value quality of life (QoL) not just quantity of life but QoL data from measures in advanced disease are sparse for drugs with only progression-free survival (PFS) or modest overall survival (OS) benefits. We examined if stabilisation of metastatic disease and/or disease symptom burden were worth treatment side effects in the AVALPROFS study. Methods: Patients with metastatic cancers starting drugs with PFS or modest OS benefits were interviewed at baseline and following 6 weeks of treatment. Further interviews were conducted at progression or if treatment was stopped for toxicity. Interviews comprised trade-off type assessments exploring worthwhileness of treatment compared with side effects.Patients completed FACT tumor and treatment specific questionnaires monthly for 6 months. Global QoL was measured across time and between patients who died or progressed on study (A), remained on study (B) or withdrew from study due to toxicity (C). Results: 90/120 (75%) eligible patients participated. 31/90 (21%) patients died or progressed within 6 months of study entry (Group A). 12 patients withdrew due to toxicity (Group B) and 47 patients stayed on treatment for 6 months (Group C). At first interview 43/90 (48%) patients had started treatment and by 6 weeks (66/69, 96%) were experiencing side effects. At both interviews patients were significantly less inclined to feel that benefits of cancer control were worthwhile as the possible side effect severity increased (X2=75.6004. p< 0.00001; 50.6896 p< 0.00001 respectively). There was an effect of patient group on general QoL (F=4.978; p = 0.007) but no group by time interaction (F=0.419; p = 0.888). Also, a significant overall group effect (A vs. C) for emotional (F=6.583, p = 0.011) and functional well-being (F=5.138, p = 0.024). More patients in Group C had stable/improved QoL over time. Conclusions: Over 6 months, QoL was stable in those patients receiving drugs with PFS only or minimal OS who could tolerate treatment side effects. As severity of side effects increased, patients were less likely to feel that treatment was worthwhile but a proportion were still willing to accept these for a relatively short increase in the time drugs controlled the cancer.

Quality of Life in Migraine Patients: A Qualitative Study

Cephalalgia ◽  
2003 ◽  
Vol 23 (9) ◽  
pp. 892-900 ◽  
Author(s):  
I Ruiz de Velasco ◽  
N González ◽  
Y Etxeberria ◽  
JC Garcia-Monco
Keyword(s):  
Quality Of Life ◽  
Focus Groups ◽  
Qualitative Methods ◽  
Family Environment ◽  
Healthcare Professionals ◽  
Well Being ◽  
Pharmacological Management ◽  
Family Work ◽  
The Impact

The impact of migraine on quality of life has been traditionally evaluated by quantitative analysis, but diverse aspects remain insufficiently assessed, so a complementary qualitative approach may have advantages. The aim of this study was to assess the impact of migraine on the quality of life of migraineurs through the perception of patients and their relatives, and healthcare professionals. Qualitative methods were used, including six focus groups and nine personal interviews with 33 migraine patients under physician-directed treatment, five self-medicated patients, five relatives of migraine patients and seven healthcare professionals. Migraine has a negative affect on the quality of life, including physical, emotional and social aspects of daily life such as family, work and social relationships. Family environment and psychological well-being of patients were the aspects most affected according to patients and relatives. Health professionals emphasized work impairment and focused on pharmacological management and on the need for adequate information about migraine for non-medicated patients and patients' relatives. Qualitative methods, such as focus groups and interviews, are a valuable resource for assessing quality of life and well-being of migraine patients. These techniques open up new areas for further research.

scholarly journals An overview of patient-reported outcome measures to analyze the quality of life after orthognathic surgery

2020 ◽  
Vol 11 (SPL4) ◽  
pp. 2266-2271
Author(s):  
Shivangi Gaur ◽  
Subhashini R ◽  
Madhulaxmi M ◽  
Abdul Wahab P U
Keyword(s):  
Quality Of Life ◽  
Surgical Treatment ◽  
Orthognathic Surgery ◽  
Social Impact ◽  
Treatment Plan ◽  
Well Being ◽  
Psychological State ◽  
Patient Reported ◽  
The Impact

Society imparts great importance to physical appearance in this modern age. The physical and psycho-social impact of a dentofacial deformity on an individual is often impossible to assess with certainty. A facial deformity can profoundly affect the quality of life and thereby entailing lifelong adjustments. Facial aesthetics affect an individual's confidence and their overall acceptance in society, which in turn has an apparent effect on their quality of life. Corrective jaw surgeries are indicated in cases not amenable to produce acceptable post-treatment results with orthodontics alone. Orthognathic surgery aims to produce a more aesthetic facial appearance and strives to improve stomatognathic functions in the process. WHO defines Quality of Life as- An individual's perception of their position in life in the context of the culture and value systems in which they live and concerning their goals, expectations, standards and concerns. It is a broad-ranging concept affected in a complicated way by the person's physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment. The impact of dentofacial deformities on an individual's holistic emotional, physical and social development has been a focus of research for a long time. Several patients reported outcome scales are employed to assess the quality of life and this review aims to discuss the use of these scales as an indicator of successful surgical treatment. At the same time, these scales may serve as a patient education tool because a holistic health indicator is required which considers the psychological well being of the patient along with regards to functional and aesthetic demands before formulating a surgical treatment plan.

scholarly journals Impact of a Yogic Breathing Technique on the Well-Being of Healthcare Professionals During the COVID-19 Pandemic

2021 ◽  
Vol 10 ◽  
pp. 216495612098295
Author(s):  
Kanchibhotla Divya ◽  
Saisudha Bharathi ◽  
Ramrakhyani Somya ◽  
Mehta H Darshan
Keyword(s):  
Life Satisfaction ◽  
Health Care Providers ◽  
Healthcare Professionals ◽  
Positive Impact ◽  
Healthcare Providers ◽  
Well Being ◽  
Care Providers ◽  
Quality Of Sleep ◽  
The Impact

Background The COVID-19 pandemic has created unprecedented challenges for healthcare globally, the brunt of which has been borne by the health care providers (HCPs). These challenges are felt more keenly in India, as they stretch an insufficiently resourced healthcare system. The long hours, cross over of responsibilities, lack of resources to adequately care for patients, and concerns around safety of self and loves ones, have led to a spike in anxiety, depression, insomnia and other stress – related disorders in healthcare providers. Sudarshan Kriya Yoga (SKY) is a mind-body intervention that has been studied in multiple clinical populations. Prior to this study, there has been no exploration of the impact of SKY on healthcare providers, specifically the impact of a mind-body intervention like SKY on HCPs during a pandemic. Objective This study aims to investigate the impact of SKY on the well-being of HCPs during the COVID-19 pandemic. Methods We conducted a pilot feasibility study with a single arm pre-post design. SKY was taught to participants in a 4-day online breath and meditation workshop. We measured outcomes related to depression, anxiety, resilience, life satisfaction, and quality of sleep. Results Ninety-two subjects completed the study survey before and after the intervention. A significant reduction was observed in the levels of stress, anxiety and depression immediately after the program. In addition, the participants reported sig1nificant improvement in life satisfaction, resilience, and the quality of their sleep. Conclusion The results indicate that SKY breathing technique had a positive impact on the well-being of healthcare professionals during the pandemic. Participants experienced improved quality of sleep, enhanced satisfaction with life, and increased resilience after SKY. This pilot study provides important data for future multi-site randomized controlled trials to study the impact of yogic techniques on well-being of the HCPs.

scholarly journals Quality of Life Assessment in Healthcare Professionals with Occupational Diseases

2020 ◽  
pp. 60-64
Author(s):  
NN Petrukhin ◽  
IV Boiko ◽  
SV Grebenkov
Keyword(s):  
Quality Of Life ◽  
Occupational Diseases ◽  
Healthcare Professionals ◽  
Human Life ◽  
Well Being ◽  
Life Assessment ◽  
Occupational Infection ◽  
Rehabilitation Measures ◽  
The Impact

Summary. Introduction: Quality of life (QOL) is an integral concept characterizing the level of comfort of the social and natural environment for human life and work, the level of well-being and social, spiritual and physical health. Currently, the number of scientific disciplines that include this concept as an object of study is expanding. Our objective was to study the impact of the system of rehabilitation measures provided for by the current federal legislation in relation to this category of patients on the quality of life of healthcare professionals with occupational diseases. Materials and methods: We assessed QOL changes related to rehabilitation in 124 healthcare professionals of the North-West Federal District who received full or partial rehabilitation for occupational diseases in 2000–2017. Results: We analyzed the dynamics of QOL indicators and assessed physical condition and the ability to perform certain functions in our subjects. The most significant changes were established for such indicators as concentration of attention (by 0.2 on average; p = 0.0393) and quality of life (by 0.2 on average; p = 0.0256). We found an improved QOL in almost 40 % of healthcare professionals with occupational diseases related to physical workloads compared with the groups of occupational infection and allergy cases. Moreover, the increment was quite small (0.2 in terms of the difference in average values, with the expected growth of at least 1–2 points). Conclusions: Incomplete and inconsistent implementation of rehabilitation measures in healthcare professionals suffering from occupational diseases leads to an insufficiently effective increase in their quality of life. A better QOL improvement in these patients requires appropriate correction of drawbacks in carrying out rehabilitation measures.

scholarly journals Improving Productivity Through Enhancing Employee Wellbeing and Participation

1970 ◽  
Author(s):  
Ray Markey ◽  
Candice Harris ◽  
Felicity Lamm ◽  
Stefan Kesting ◽  
Katherine Ravenswood ◽  
...  
Keyword(s):  
Work Environment ◽  
Employee Participation ◽  
Well Being ◽  
Environment Impact ◽  
Employment Practices ◽  
Employee Wellbeing ◽  
Workplace Productivity ◽  
International Comparative ◽  
The Impact

This paper outlines the rationale and methodology for an international comparative project investigating the links between workplace productivity and employee wellness and well being via the operation of representative employee participation structures in Denmark and New Zealand. It will define and discuss the often contentious terms of productivity, wellbeing and participation and how employee participation and wellbeing and the work environment impact on productivity. This paper employs a multi-dimensional theoretical framework and will assess the significance of the issues examined: analyse the impact of employment practices and quality of the work environment on productivity: and as a result present the methodology developed for the project.

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