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A preliminary study of a health related quality of life assessment of priority symptoms in advanced lymphoma: the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy - Lymphoma Symptom Index.

ABSTRACT: Despite the recent advances in cancer therapeutics for lymphoma (Lym), a continuum of disease, treatment and psychological challenges, adversely impacting health-related quality of life, remain for the clinical management of the patient with Lym. In response, this study presents the development and validation of the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy (NCCN-FACT) Lymphoma Symptom Index-18 (FLymSI-18). Patients with advanced Lym (n = 50) rated the significance of 40 symptoms, and hematologist-oncologists (n = 10) rated these symptoms according to importance and disease-related or treatment-related origin. Patient symptom priorities were unified with clinician priorities for symptom measurement in Lym for instrument development. Reliability estimates indicate that FLymSI-18 has acceptable internal consistency (? = 0.87), content validity and concurrent validity as indicated by moderate to strong correlations with the FACIT (Functional Assessment of Chronic Illness Therapy). Overall, the FLymSI-18 provides evidence for its reliability and validity as a brief assessment of the most important symptoms associated with advanced Lym in the clinical trial research environment.

SUBMITTER: Hlubocky FJ

PROVIDER: S-EPMC5889924 | biostudies-literature | 2013 Sep

REPOSITORIES: biostudies-literature

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A preliminary study of a health related quality of life assessment of priority symptoms in advanced lymphoma: the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy - Lymphoma Symptom Index.

Hlubocky Fay J FJ Webster Kimberly K Beaumont Jennifer J Cashy John J Paul Diane D Abernethy Amy A Syrjala Karen L KL Von Roenn Jamie J Cella David D

Leukemia & lymphoma 20130207 9

Despite the recent advances in cancer therapeutics for lymphoma (Lym), a continuum of disease, treatment and psychological challenges, adversely impacting health-related quality of life, remain for the clinical management of the patient with Lym. In response, this study presents the development and validation of the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy (NCCN-FACT) Lymphoma Symptom Index-18 (FLymSI-18). Patients with advanced Lym (n = 50) rated the signifi ...[more]

PMID: 23320888

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Project description:BackgroundBreast cancer is one of the most common cancers in women. Patient-reported outcome measures are used to evaluate patients' health-related quality of life in clinical breast cancer studies. This study evaluated the structure, validity, reliability, and responsiveness of the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy-Breast Cancer Symptom Index (NFBSI-16) subscales in a clinical trial featuring patients with advanced/metastatic breast cancer (aBC), and estimated NFBSI-16 meaningful change thresholds.MethodsData from 101 patients with aBC enrolled in a phase II trial (Xenera-1) were included for psychometric evaluation of the NFBSI-16. Subscale structure was evaluated by assessing inter-item correlations, item-total correlations, and internal consistency (cycles 2 and 5). Validity was assessed using scale-level convergent validity (cycles 2 and 5) and known-groups (Baseline). Reliability was analysed via test-retest at cycles 3-4, and responsiveness to improvement and worsening was evaluated at cycles 5, 7, and 9. Meaningful change thresholds were estimated using anchor-based methods (supported by distribution-based methods) at cycles 5, 7, and 9.ResultsNFBSI-16 internal consistency was acceptable, but item-total correlations suggested that its subscales and the GP5 item (side-effect of treatment) scores may be preferred over a total score. Convergent and known-groups evidence supported NFBSI-16 validity. Test-retest reliability was good to excellent for Total and DRS-P (disease-related symptoms: physical) scales, and moderate for the GP5 item. Responsiveness to worsening was generally demonstrated, but responsiveness to improvement could not be demonstrated due to limited observed improvement. Anchor-based meaningful change thresholds were estimated for DRS-P and Total scores.ConclusionThis study provides evidence that the NFBSI-16 has desirable psychometric properties for use in clinical studies in aBC. It also provides estimates of group- and individual-level meaningful change thresholds to facilitate score interpretation in future aBC research.

Project description:BackgroundNational campaigns focusing on key symptoms of bowel and lung cancer ran in England in 2012, targeting men and women over the age of 50 years, from lower socioeconomic groups.MethodsData from awareness surveys undertaken with samples of the target audience (n=1245/1140 pre-/post-bowel campaign and n=1412/1246 pre-/post-lung campaign) and Read-code data extracted from a selection general practitioner (GP) practices (n=355 for bowel and n=486 for lung) were analysed by population subgroups.ResultsUnprompted symptom awareness: There were no significant differences in the magnitude of shift in ABC1 vs C2DE groups for either campaign. For the bowel campaign, there was a significantly greater increase in awareness of blood in stools in the age group 75+ years compared with the 55-74 age group, and of looser stools in men compared with women. Prompted symptom awareness: Endorsement of 'blood in poo' remained stable, overall and across different population subgroups. Men showed a significantly greater increase in endorsement of 'looser poo' as a definite warning sign of bowel cancer than women. There were no significant differences across subgroups in endorsement of a 3-week cough as a definite warning sign of lung cancer. GP attendances: Overall, there were significant increases in attendances for symptoms directly linked to the campaigns, with the largest percentage increase seen in the 50-59 age group. For the bowel campaign, the increase was significantly greater for men and for practices in the most-deprived quintile, whereas for lung the increase was significantly greater for practices in the least-deprived quintile.ConclusionsThe national bowel and lung campaigns reached their target audience and have also influenced younger and more affluent groups. Differences in impact within the target audience were also seen. There would seem to be no unduly concerning widening in inequalities, but further analyses of the equality of impact across population subgroups is warranted.

Project description:AimsPatients with heart failure (HF) may have variable unrecognized symptom burdens. We sought to investigate the details, determinants, and prognostic significance of symptom burden in hospitalized patients with HF.Methods and resultsWe prospectively evaluated consecutive hospitalized patients with HF as primary diagnosis at our institution using the Integrated Palliative care Outcome Scale (IPOS) both on admission and at discharge. The IPOS, which is a well-validated multi-dimensional symptom assessment scale among advanced illness, consists of 17 questions for enquiring about physical symptoms (10 items), emotional symptoms (4 items) and communication and practical issues (3 items) using a 5-point Likert scale (0 [best]-4 [worst] points). Clinically relevant symptoms were defined as ≥2 points for each IPOS item. Worsening symptom burden was defined as the total IPOS score at discharge being poorer than that on admission. Of 294 patients (mean age: 77.5 ± 12.0 years, male: 168 patients, New York Heart Association class IV: 96 patients, mean left ventricular ejection fraction [LVEF]: 44%, and median N-terminal pro B-type natriuretic peptide [NT-proBNP] level: 4418 ng/L), the median (IQR) total IPOS score on admission was 19 (12, 27) and they were widely distributed (minimum: 0 - maximum: 52). The total IPOS score on admission was not correlated with the HF severity, including LVEF (Spearman's ρ = -0.05, P = 0.43), NT-proBNP levels (Spearman's ρ = 0.08, P = 0.20) or in-hospital mortality prediction model (GWTG-HF risk score) (Spearman's ρ = 0.01, P = 0.90). Total IPOS scores significantly decreased during hospitalization as a whole (median [IQR]: 13 [6, 21] at discharge; P < 0.001 vs. those on admission). All of the four emotional symptoms (patient anxiety, depression, family anxiety and feeling at peace) remained in the top 5 of clinically relevant symptoms at discharge, whereas none of 10 physical symptoms were nominated. Worsening symptom burden was noted in 28% of the patients during hospitalization, and was independently associated with higher all-cause mortality after discharge (hazard ratio: 2.28, 95% confidence interval: 1.02-5.09; P = 0.044) even after adjustment by age and HF mortality prediction model (MAGGIC risk score).ConclusionsWe revealed that hospitalized patients with HF had multi-dimensional symptom burdens which varied among individuals and were not correlated with the disease severity. Emotional symptoms, such as anxiety and depression, were the main clinically relevant symptoms at discharge. A worsening IPOS score was noted in a quarter of patients with HF and was associated with a poor prognosis, suggesting the importance of holistic symptom assessment during the course of hospitalization for HF.

Project description:PURPOSE:Engaging in positive health behaviors post-treatment is important for cancer survivors' health. However, little is known about whether survivors are practicing health promoting behaviors. We aimed to explore whether survivors are meeting the recent health behavior guidelines set forth by the National Comprehensive Cancer Network (NCCN) and to examine associations between health behaviors and distress. METHODS:Sixty-six survivors completed a cross-sectional questionnaire assessing health behaviors prior to an initial appointment at a survivorship care clinic. Information about sociodemographic, clinical, and psychosocial variables and six health behavior recommendations, including physical activity, sunscreen use, tobacco use, alcohol consumption, weight management, and annual primary care provider visits, was collected. FINDINGS:Only 7.6% of survivors met all six NCCN health behavior guidelines. One in ten (10.6%) survivors had smoked a cigarette in the previous 30 days, and half did not use sunscreen regularly (50%), had an unhealthy body mass index (53%), and did not engage in >10 MET-h/week of physical activity (50%). Approximately 1 in 6 (15.1%) survivors reported drinking beyond the recommended limit, and a similar proportion had not seen a PCP in the previous year (27.3%). Clinically significant levels of distress (>5; range 0-10) on the NCCN distress scale were reported by 64.6% of survivors. Participants with clinical levels of distress were less likely to adhere to health behavior guidelines than those who were not distressed (p = .002). CONCLUSIONS:Overall, survivors engaged at a survivorship clinic did not meet the NCCN recommended health behavior guidelines. Implications for Psychosocial Providers or Policy: Survivors' health behaviors and distress should be assessed and intervened upon during survivorship care. Survivorship clinics may provide a unique forum in which to provide ongoing behavioral health counseling and psychosocial support for these patients.

Dataset Information

A preliminary study of a health related quality of life assessment of priority symptoms in advanced lymphoma: the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy - Lymphoma Symptom Index.

Publications

A preliminary study of a health related quality of life assessment of priority symptoms in advanced lymphoma: the National Comprehensive Cancer Network-Functional Assessment of Cancer Therapy - Lymphoma Symptom Index.

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