scholarly journals The Development and Validation of a Measure of Health-Related Quality of Life for Non-Hodgkin’s Lymphoma: The Functional Assessment of Cancer Therapy—Lymphoma (FACT-Lym)

Lymphoma ◽  
2013 ◽  
Vol 2013 ◽  
pp. 1-9 ◽  
Author(s):  
Fay J. Hlubocky ◽  
Kimberly Webster ◽  
John Cashy ◽  
Jennifer Beaumont ◽  
David Cella
Keyword(s):  
Quality Of Life ◽  
Clinical Research ◽  
Hodgkin’S Lymphoma ◽  
Hodgkin's Lymphoma ◽  
Health Related Quality ◽  
Non Hodgkin’S Lymphoma ◽  
Non Hodgkin's Lymphoma ◽  
Related Quality ◽  
Health Related

Background. The individual concerns of non-Hodgkin’s lymphoma (NHL) patients require identification and assessment during clinical research proposing to measure patients’ outcomes. The FACT-Lym was developed as part of the FACIT measurement system to address health-related quality-of-life (HRQL) issues for NHL patients. Patients and Methods. Items for the FACT lymphoma subscale (LymS) were generated from healthcare provider interviews, published literature, and content validity patient interviews. The FACT-Lym was validated on a sample of 84 NHL patients, with additional measures at baseline (T1), 3–7 days (T2), and 8–12 weeks (T3). Results. Item correlations, expert relevance ratings, and patient input on content shortened the initial 22-item LymS to 15 items. The validation sample included 56% female, 76.2% white, 60% indolent disease, and 85% receiving treatment. Internal consistency coefficients for the 15-item LymS (.79, .85, and .84 T1–T3) and test-retest stability (.84) indicated good reliability. Correlations between LymS and SF-36 physical (r=.62) and mental (r=.48) summary scores reflect concurrent validity. Responsiveness to ECOG performance status and treatment status exceeded established FACT subscale scores. The FACT-LymS differentiated patients’ retrospective ratings of change in each of the three groups (better; unchanged; worse), P<0.001. Conclusions. These results support the validity of the FACT-Lym and suggest it will be a useful targeted endpoint in NHL clinical research.

Development of a Measure of Health-Related Quality of Life for Non-Hodgkin’s Lymphoma Clinical Research: The Functional Assessment of Cancer Therapy - Lymphoma (FACT-Lym).

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 750-750 ◽  
Author(s):  
David Cella ◽  
Kimberly Webster ◽  
John Cashy ◽  
Lucie Kutikova ◽  
Michael F. Burgess ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Research ◽  
Effect Size ◽  
Hodgkin’S Lymphoma ◽  
Hodgkin's Lymphoma ◽  
Care Providers ◽  
Non Hodgkin’S Lymphoma ◽  
Non Hodgkin's Lymphoma ◽  
Validation Testing

Abstract Background: The FACT-Lym was developed to address the disease-specific quality-of-life (QOL) issues for patients with non-Hodgkin’s lymphoma (NHL). Methods: Items for inclusion in the lymphoma subscale for the FACT instrument were generated from interviews with health care providers and published literature on NHL. Items were selected based on symptom relevance, disease-specificity and clinical relevance. Validation testing was conducted with NHL patients. Patients completed the FACT-Lym and other measures at three timepoints: baseline (T1), 3–7 days (T2), and 8–12 weeks (T3). These patients were also interviewed about item content. Results: From a pool of 69 items, 22 items were selected for testing based on relevance ratings of 17 experts. Items included B symptoms, sleep disturbance, anorexia, pruritus, pain, swelling, dyspnea, fatigue, emotional lability, worries, and uncertainty about the future. 75 NHL patients participated in validation testing (55% female, 59% with indolent disease, and 84% currently receiving treatment). Patient interviews confirmed item relevance and comprehensiveness. Item correlations, expert relevancy ratings, and patient input further reduced the subscale to 15 items. Internal consistency coefficients (alpha) for the 15–item subscale (.80, .86, .83) and test-retest stability (.85) suggest very good reliability. Correlations between the subscale and the SF-36 physical (r=.62) and mental (r=.47) summary scores reflect concurrent validity. Responsiveness to ECOG performance status rating and treatment status (on vs. off) equaled or exceeded that of the more established FACT subscale scores. From T1 to T3, subscale scores declined (−6.8, effect size= −0.86) in 14 patients who reported themselves as worsened, increased (3.9, effect size= 0.49) in 28 patients who reported themselves as improved, and did not change (−0.2, effect size= −0.02) in 18 patients who reported themselves as unchanged. Conclusions: The FACT-Lym addresses QOL concerns that are relevant to NHL patients and is reliable and valid for use in clinical research.

scholarly journals Assessing Health-Related Quality of Life in Children and Adolescents with Diabetes: Development and Psychometrics of the Type 1 Diabetes and Life (T1DAL) Measures

2019 ◽  
Author(s):  
Marisa E Hilliard ◽  
Charles G Minard ◽  
David G Marrero ◽  
Maartje de Wit ◽  
Debbe Thompson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Type 1 Diabetes ◽  
Clinical Research ◽  
Children And Adolescents ◽  
Cognitive Debriefing ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Objective To develop and validate new measures of diabetes-specific health-related quality of life (HRQOL) for people with type 1 diabetes (T1D) that are brief, developmentally appropriate, and usable in clinical research and care. Here we report on the phases of developing and validating the self-report Type 1 Diabetes and Life (T1DAL) measures for children (age 8–11) and adolescents (age 12–17). Methods Measure development included qualitative interviews with youth and parents (n = 16 dyads) followed by piloting draft measures and conducting cognitive debriefing with youth (n = 9) to refine the measures. To evaluate the psychometric properties, children (n = 194) and adolescents (n = 257) at three T1D Exchange Clinic Network sites completed the age-appropriate T1DAL measure and previously validated questionnaires measuring related constructs. Using psychometric data, the investigators reduced the length of each T1DAL measure to 21 and 23 items, respectively, and conducted a final round of cognitive debriefing with six children and adolescents. Results The T1DAL measures for children and adolescents demonstrated good internal consistency (α = 0.84 and 0.89, respectively) and test–retest reliability (r = 0.78 and 0.80, respectively). Significant correlations between the T1DAL scores and measures of general quality of life, generic and diabetes-specific HRQOL, diabetes burden, and diabetes strengths demonstrated construct validity. Correlations with measures of self-management (child and adolescent) and glycemic control (adolescent only) demonstrated criterion validity. Factor analyses indicated four developmentally specific subscales per measure. Participants reported satisfaction with the measures. Conclusions The new T1DAL measures for children and adolescents with T1D are reliable, valid, and suitable for use in care settings and clinical research.

scholarly journals Quality of Life and Impact of Cancer: Differences in Rural and Nonrural Non‐Hodgkin's Lymphoma Survivors

2020 ◽  
Vol 36 (4) ◽  
pp. 536-542
Author(s):  
Devon Noonan ◽  
Matthew LeBlanc ◽  
Cherie Conley ◽  
Habtamu Benecha ◽  
Ashley Leak‐Bryant ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hodgkin’S Lymphoma ◽  
Hodgkin's Lymphoma ◽  
Non Hodgkin’S Lymphoma ◽  
Non Hodgkin's Lymphoma ◽  
Lymphoma Survivors

scholarly journals Neuro-QOL: Brief measures of health-related quality of life for clinical research in neurology

Neurology ◽  
2012 ◽  
Vol 78 (23) ◽  
pp. 1860-1867 ◽  
Author(s):  
D. Cella ◽  
J.- S. Lai ◽  
C. J. Nowinski ◽  
D. Victorson ◽  
A. Peterman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Research ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Physical Activity and Quality of Life in Adult Survivors of Non-Hodgkin's Lymphoma

2009 ◽  
Vol 27 (6) ◽  
pp. 960-966 ◽  
Author(s):  
Keith M. Bellizzi ◽  
Julia H. Rowland ◽  
Neeraj K. Arora ◽  
Ann S. Hamilton ◽  
Melissa Farmer Miller ◽  
...  
Keyword(s):  
Public Health ◽  
Quality Of Life ◽  
Physical Activity ◽  
Cancer Survivors ◽  
Hodgkin’S Lymphoma ◽  
Adult Survivors ◽  
Hodgkin's Lymphoma ◽  
Non Hodgkin’S Lymphoma ◽  
Non Hodgkin's Lymphoma

Purpose To examine the prevalence and correlates of physical activity in adult survivors of aggressive non-Hodgkin's Lymphoma (NHL) and to explore the association between physical activity level and health-related quality of life (HRQOL). Patients and Methods Physical activity and HRQOL data from 319 survivors of NHL (mean age, 59.8 years, standard deviation, ±14.8) who were diagnosed in Los Angeles County approximately 2 to 5 years before the study was analyzed. Results One quarter of survivors of NHL met public health guidelines of 150 minutes or more of moderate to vigorous exercise per week. More than half (53%) reported some activity but less than 150 minutes per week, whereas 20% reported no physical activity. Females, those with lower perceived health competence, and individuals with more comorbid limitations were at increased risk for inactivity. Individuals who met public health guidelines reported better HRQOL than those who were sedentary. Interestingly, our findings suggest a significant positive association between HRQOL and those who get at least some exercise. Conclusion The effort to promote physical activity among cancer survivors, who are at risk for poor quality of life as a result of treatment, is of great importance to the health of this growing population. As NHL, similar to other cancers, becomes a disease that people live with as opposed to one that people die as a result of, oncologists and primary care physicians will be increasingly challenged to provide evidence-based guidance for the long-term management of the patient's health. Consideration should be given to how clinicians frame exercise-promoting messages to cancer survivors, especially to those who are sedentary.

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