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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: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: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.

Project description:Background: There is growing evidence that trauma, psychosocial conflict, and difficulties with emotional processing contribute to centralized somatic symptoms. Emotional Awareness and Expression Therapy (EAET) was developed to address these factors and reduce symptoms, and EAET has shown efficacy in face-to-face formats. No trial of an internet-delivered EAET (I-EAET) exists, however, so we developed such an intervention and conducted an uncontrolled feasibility and potential efficacy trial of I-EAET for patients with Somatic Symptom Disorder (SSD) with centralized symptoms (SSD-CS). Method: After screening potential participants, a sample of 52 patients (50 women, two men; age M = 49.6, SD = 11.9) diagnosed with SSD-CS initiated treatment. I-EAET consisted of nine weekly modules focused on psychoeducation, emotional awareness and exposure, and anxiety regulation with self-compassion. Therapists communicated with each patient by email for about 20 min per week during treatment, answering questions and giving feedback on homework assignments. Patients completed measures of somatic symptoms, depression, anxiety, trauma-related symptoms, and functional disability before treatment and again at post-treatment and 4-month follow-up. Results: A large reduction in somatic symptoms (PHQ-15) occurred pre-to post-treatment (d = 1.13; 95% CI: 0.84-1.47) which was fully maintained at 4-month follow-up (d = 1.19; 95% CI: 0.88-1.56). Twenty-three percent of the patients at post-treatment and 27% at follow-up achieved a 50% or greater reduction in somatic symptoms, and about 70% achieved a minimally important clinical difference. In addition, at post-treatment, there were small to medium reductions (d's from 0.33 to 0.72) in anxiety (GAD-7), depression (PHQ-9), trauma-related symptoms (PCL-5), and functional disability (Sheehan Disability Scale). For all of these secondary outcomes, improvements were slightly to substantially larger at follow-up than at post-treatment (d's from 0.46 to 0.80). Conclusion: I-EAET appears to be a feasible treatment for adults with SSD and centralized symptoms, resulting in substantial and durable improvement not only in somatic symptoms but in other psychiatric symptoms and functioning. Controlled trials are needed determine the effects of I-EAET specifically and how this approach compares to face-to-face EAET and to other internet-delivered treatments, such as cognitive-behavioral interventions. Research should also identify treatment responders and mechanisms of change in EAET. Clinical Trial Registration: www.ClinicalTrials.gov, identifier: NCT04122846.

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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