What are the important health-related quality of life issues in patients diagnosed with indolent lymphoma?

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 18574-18574
Author(s):  
S. D. Mathias ◽  
T. A. Cimms ◽  
H. H. Colwell ◽  
D. P. Lubeck ◽  
K. L. Dawson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Watchful Waiting ◽  
Treatment Options ◽  
Full Range ◽  
Specific Treatment ◽  
Indolent Lymphoma ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

18574 Background: Numerous treatment options are available for indolent lymphoma (IL), including watchful waiting, each with unique, longer term therapeutic and health-related quality of life (HRQL) issues. No validated HRQL questionnaire currently exists to assess the full range of issues that impact an IL patient’s QoL. We sought to fully assess these important areas to inform decisions about the use of a HRQL questionnaire in clinical studies. Methods: Five focus groups (n = 33), supplemented by in-depth one-on-one telephone interviews (n = 19) were conducted with IL patients across the US. Results: A total of 52 IL patients (65% female; mean age 53 years) participated and completed a questionnaire. Mean time since diagnosis was 51 months; 83% had received active treatment since diagnosis. Participants belonged to one of the following treatment categories: Watchful Waiting (17%), Actively Being Treated (50%), and Previously Treated (33%). Patients identified 4 domains and issues (see Table ) common across all patients regardless of treatment category. Treatment-specific issues included lack of control over the disease with watchful waiting vs. taking control, and actively fighting the disease with a specific treatment. Results from the questionnaire will be presented. Conclusions: Further elucidation of these issues is needed to facilitate HRQL evaluation in future studies and better inform treatment decisions. [Table: see text] [Table: see text]

Health-Related Quality of Life of Patients Diagnosed with Indolent Lymphoma.

Blood ◽  
2006 ◽  
Vol 108 (11) ◽  
pp. 5524-5524
Author(s):  
Susan D. Mathias ◽  
Tricia A. Cimms ◽  
Hilary H. Colwell ◽  
Carolina M. Reyes ◽  
Deborah P. Lubeck
Keyword(s):  
Quality Of Life ◽  
Active Treatment ◽  
Watchful Waiting ◽  
Previous Treatment ◽  
Well Being ◽  
Indolent Lymphoma ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Background Numerous treatment options are available for patients with indolent lymphoma (IL), including active treatment and active observation without initiation of therapy, watchful waiting; each is associated with unique, longer term therapeutic and health-related quality of life (HRQL) consequences. We sought to identify key HRQL domains of importance to patients with indolent lymphoma and whether HRQL varies by treatment. Methods Five focus groups (n=33), supplemented by in-depth one-on-one telephone interviews (n=19) were conducted with IL patients across the US. Patients completed a questionnaire composed of five standard validated instruments related to physical well-being, social/family well-being, emotional well-being, functional well-being (FACT-G), additional concerns (FACT-Lym), physical appearance, psychosocial adaptation to illness (PAIS), and mental health (MHI-5). Questionnaire domains were scored on a 0–100 scale where higher scores indicate better functioning. Results A total of 52 IL patients (65% female; mean age 53 years) completed the questionnaire. Participants belonged to one of the following treatment categories: Active Treatment (n=18), Previous Treatment (n=25) and Watchful Waiting (n=9). Similarities in FACT scores were found between the Previous Treatment and Watchful Waiting groups. The Watchful Waiting group scored the lowest on both the MHI-5 and the PAIS. Differences were found in Physical Well-Being between the Active Treatment and Previous Treatment groups (67.06 vs. 81.10, respectively, p=0.029). Differences were observed for the PAIS between the Active Treatment and Watchful Waiting groups (83.82 vs. 65.63, respectively, p=0.021) and between the Previous Treatment and Watchful Waiting groups (85.00 vs. 65.63, respectively, p=0.010). Conclusions Preliminary findings suggest that differences were observed between patients on active treatment, those who have previously been treated and patients who have never been treated, watchful waiting. Further elucidation of these issues is needed to facilitate HRQL evaluation in future studies and more importantly better inform patients and providers of treatment decisions. Table 1. Mean (Standard Deviation) HRQL Scores of all Patients and by Treatment Categories Domains All Patients (N=52) Active Treatment (N=18) Previous Treatment (N=25) Watchful Waiting (N=9) FACT-G 73.01 (15.56) 67.41 (15.82) 76.21 (14.12) 75.67 (17.30) FACT-Lym 71.35 (15.25) 67.63 (16.09) 73.11 (12.39) 75.02 (18.58) Physical Appearance 76.85 (29.36) 65.00 (31.62) 82.69 (27.74) 87.50 (25.00) PAIS 81.50 (18.77) 83.82 (16.40) 85.00 (18.40) 65.63 (18.60) MHI-5 69.08 (18.00) 69.33 (15.22) 71.36 (18.46) 62.22 (21.92)

scholarly journals Health-Related Quality of Life in Adrenocortical Carcinoma

Cancers ◽  
2019 ◽  
Vol 11 (10) ◽  
pp. 1500 ◽  
Author(s):  
Rebecca V. Steenaard ◽  
Laura A. Michon ◽  
Harm R. Haak
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Adrenocortical Carcinoma ◽  
Treatment Options ◽  
Clinical Aspects ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.

Watchful Waiting and Health Related Quality of Life for Patients With Localized Prostate Cancer: Data From CaPSURE

2008 ◽  
Vol 179 (5S) ◽  
Author(s):  
Shelley A. Arredondo ◽  
Tracy M. Downs ◽  
Deborah P. Lubeck ◽  
David J. Pasta ◽  
Stefanie J. Silva ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Watchful Waiting ◽  
Localized Prostate Cancer ◽  
Health Related Quality ◽  
Cancer Data ◽  
Related Quality ◽  
Health Related

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences

2016 ◽  
Vol 35 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Kara B. Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Nancy McGee ◽  
Seth Latimer
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Treatment Options ◽  
National Sample ◽  
Health Related Quality ◽  
Location Of Death ◽  
Related Quality ◽  
Health Related ◽  
Eol Care

Background: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. Aim: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). Design: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. Setting/Participants: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. Results: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants’ multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. Conclusion: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

scholarly journals Comparison of Instruments for Measuring Health-Related Quality of Life and Their Applicability to Ehealth Applications

2021 ◽  
Author(s):  
Marlene Schmidt ◽  
Martin Staemmler
Keyword(s):  
Quality Of Life ◽  
Treatment Options ◽  
Health Issues ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Hrqol Assessment ◽  
Adherence Monitoring ◽  
The Impact

Health-related Quality of Life (HRQoL) assessment has proven as a good means for assessing treatment options or impact of applications supporting the patient in adherence, monitoring and better understanding of health issues. While most of the HRQoL instruments were designed several years ago, their capability to assess the impact of ehealth application is in question. The objective of this paper is to assess HRQoL instruments including a focus on the ehealth domain. Methods: Generic and specific instruments are selected based on their widespread use. Published criteria for assessing HRQoL instruments are used for a baseline, which are amended by criteria covering both the ehealth domain and the conditions of use of instruments and structured in groups. Results: Seven instruments have been selected and assessed using the established criteria. The instruments scored differently regarding the ehealth domain, however overall rather low. Applying weighting per group allows highlighting specific aspects. Based on the assessment, further research should consider the development of a ehealth domain module as part of the specific instruments.

scholarly journals MANAGEMENT OF ENDOCRINE DISEASE: The burden of Cushing's disease: clinical and health-related quality of life aspects

2012 ◽  
Vol 167 (3) ◽  
pp. 311-326 ◽  
Author(s):  
R A Feelders ◽  
S J Pulgar ◽  
A Kempel ◽  
A M Pereira
Keyword(s):  
Quality Of Life ◽  
Cushing’S Disease ◽  
Treatment Options ◽  
Current Treatment ◽  
Cushing's Disease ◽  
Health Related Quality ◽  
Time To Diagnosis ◽  
Related Quality ◽  
Health Related

ObjectiveCushing's disease (CD) is a rare endocrine disorder characterized by excess secretion of ACTH due to a pituitary adenoma. Current treatment options are limited and may pose additional risks. A literature review was conducted to assess the holistic burden of CD.DesignStudies published in English were evaluated to address questions regarding the epidemiology of CD, time to diagnosis, health-related quality of life (HRQoL), treatment outcomes, mortality, prevalence of comorbidities at diagnosis, and reversibility of comorbidities following the treatment.MethodsA two-stage literature search was performed in Medline, EMBASE, and Science Citation Index, using keywords related to the epidemiology, treatment, and outcomes of CD: i) articles published from 2000 to 2012 were identified and ii) an additional hand search (all years) was conducted on the basis of bibliography of identified articles.ResultsAt the time of diagnosis, 58–85% of patients have hypertension, 32–41% are obese, 20–47% have diabetes mellitus, 50–81% have major depression, 31–50% have osteoporosis, and 38–71% have dyslipidemia. Remission rates following transsphenoidal surgery (TSS) are high when performed by expert pituitary surgeons (rates of 65–90%), but the potential for relapse remains (rates of 5–36%). Although some complications can be partially reversed, time to reversal can take years. The HRQoL of patients with CD also remains severely compromised after remission.ConclusionsThese findings highlight the significant burden associated with CD. As current treatment options may not fully reverse the burden of chronic hypercortisolism, there is a need for both improved diagnostic tools to reduce the time to diagnosis and effective therapy, particularly a targeted medical therapy.

Health related quality of life in patients with critical limb ischemia

VASA ◽  
2012 ◽  
Vol 41 (2) ◽  
pp. 78-88 ◽  
Author(s):  
Lawall ◽  
Zemmrich ◽  
Bramlage ◽  
Amann
Keyword(s):  
Quality Of Life ◽  
Critical Limb Ischemia ◽  
Treatment Options ◽  
Limb Ischemia ◽  
Arterial Disease ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Peripheral Arterial

Critical limb ischemia (CLI) is the terminal stage of peripheral artery disease. Research in recent years has been largely focussed on treatment options such as bypass surgery / endovascular treatment, surgery / primary amputation and additional benefits of supportive pharmacotherapy. Despite this plethora of treatment options, however, patients continue to have a reduced health related quality of life (HRQoL). Aim of the present work was to review the available evidence of improvement of HRQoL with regard to different treatment options. We found that a number of clinical studies have been conducted using HRQoL measures mostly as secondary outcomes in patients with CLI and other less severe forms of peripheral arterial disease. The studies demonstrate a consistent improvement of HRQoL over baseline within the first few months after the intervention. Prostaglandins, but no other pharmacotherapies, appear to be effective in patients without an option for revascularization. Due to a largely differing patient population under investigation and the different degrees of disease progression it appears difficult however to compare different treatment options with respect to their impact on HRQoL. HRQoL improvement as a predefined endpoint of novel therapeutic approach studies should be considered more consequently.

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