Patient-reported outcome after radical cystectomy: translation and psychometric validation of the Swedish version of the Functional Assessment of Cancer Therapy Scale Vanderbilt Cystectomy Index

2016 ◽  
Vol 50 (5) ◽  
pp. 374-379 ◽  
Author(s):  
Karin Stenzelius ◽  
Anna-Karin Lind ◽  
Jenny Wanegård ◽  
Fredrik Liedberg
Keyword(s):  
Cancer Therapy ◽  
Radical Cystectomy ◽  
Functional Assessment ◽  
Patient Reported Outcome ◽  
Psychometric Validation ◽  
Swedish Version ◽  
Patient Reported

Use of the Functional Assessment of Cancer Therapy-Anemia (FACT-An) Instrument in Persons with MPN-Associated Myelofibrosis and Anemia

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 4706-4706
Author(s):  
Stacie Hudgens ◽  
Tom Tencer ◽  
Robert Peter Peter Gale ◽  
Zeba M. Khan
Keyword(s):  
Cancer Therapy ◽  
Functional Assessment ◽  
Myeloproliferative Neoplasm ◽  
Well Being ◽  
Change Score ◽  
Patient Reported Outcome ◽  
Double Blind ◽  
Patient Reported ◽  
Outcome Index ◽  
Rbc Transfusion

Abstract Abstract 4706 Background. Myeloproliferative neoplasm (MPN)-associated myelofibrosis is characterized by anemia in almost all affected persons. The Functional Assessment of Cancer Therapy (FACT) measurement system is a patient-reported outcome (PRO) developed to document symptoms to diverse aspects of cancer treatment. One FACT version, FACT-An, specifically addresses symptoms of anemia related to cancer- therapy. FACT-An has been validated in diverse cancer populations but not in MPN-associated myelofibrosis. Methods. Data were from a phase-2 randomized double-blind Bayesian “pick-the-winner” trial of pomalidomide and prednisone in subjects with MPN-associated myelofibrosis and anemia (including RBC-transfusion-dependence). Details of the study, including definitions of anemia, response, RBC-transfusion-dependence and –independence were published previously. Change in quality of life (QOL) from randomization to the last cycle of therapy was evaluated by using the FACT-An physical well-being (PWB), functional well-being (FWB), trial outcome index (TOI) and anemia (An) domains. Minimally clinically important differences (MID) were used to determine the smallest difference in scores which subjects perceived as beneficial in the FACT-An domains of interest. Subjects were classified as meeting MID for responsiveness if their change score from baseline was greater than one standard error of measurement (SEM), indicating improvement. Results. 85 subjects were studied. All FACT-An domains showed strong reliability as measured by Cronbach's alpha. 31 were classified as anemia responders by clinical and laboratory criteria. Anemia responders showed greater improvement in PWB, FWB and TOI scores than non-responders (TOI presented below) across all FACT-An domains. Improvement began at the 2nd 28 d cycle of therapy and was sustained. Conclusion. We show anemia response defined by IWG-MRT criteria correlates with improved QOL measured by the FACT-An instrument in persons with MPN-associated myelofibrosis. Disclosures: Tencer: Celgene Corporation: Employment. Gale:Celgene Corporation: Employment. Khan:Celgene: Employment.

Psychometric validation of the dysmenorrhea daily diary (DysDD): a patient-reported outcome for dysmenorrhea

2017 ◽  
Vol 26 (8) ◽  
pp. 2041-2055 ◽  
Author(s):  
Allison M. Nguyen ◽  
Rob Arbuckle ◽  
Tjeerd Korver ◽  
Fang Chen ◽  
Beverley Taylor ◽  
...  
Keyword(s):  
Daily Diary ◽  
Patient Reported Outcome ◽  
Psychometric Validation ◽  
Patient Reported

Patient-Reported Outcomes Integrated Within an Electronic Medical Record in Patients With Head and Neck Cancer

2021 ◽  
pp. 842-848
Author(s):  
Stephanie Ossowski ◽  
Amy Kammerer ◽  
Douglas Stram ◽  
Lisa Piazza-DeLap ◽  
Ethan Basch ◽  
...  
Keyword(s):  
Head And Neck Cancer ◽  
Cancer Therapy ◽  
Head And Neck ◽  
Medical Record ◽  
Electronic Medical Record ◽  
Neck Cancer ◽  
Functional Assessment ◽  
Primary Language ◽  
Patient Reported ◽  
Pro Tools

PURPOSE Patient-reported outcome (PRO) tools lead to clinical benefits, including improved overall survival for patients with cancer. However, routine implementation of PROs in clinical practice within the electronic medical record (EMR) by integrated health care delivery systems remains limited. We studied the use of a PRO tool for patients with head and neck cancer (HNC) integrated in an EMR at Kaiser Permanente in Northern California. METHODS Between August 2017 and December 2019, patients with newly diagnosed HNC were surveyed at baseline, then every 3 months using the Functional Assessment of Cancer Therapy–General 7 and Functional Assessment of Cancer Therapy–Head and Neck (version 4). A medical assistant performed a baseline survey on diagnosis and then notified patients electronically per surveillance protocol. Patients who did not respond to online PRO surveys could complete them via telephone or in-person appointments with medical assistants. Abnormal findings on PRO surveys were referred to appropriate members of the care team or the treating Otolaryngology-Head and Neck Surgery physicians. RESULTS Two hundred ninety patients received baseline surveys. Patients received up to a maximum of eight subsequent surveys. Of a total of 597 electronic surveys, 585 (97.9%) were completed. The percentage of patients completing each interval survey ranged from 92% to 100%. Multivariate Poisson regression analysis showed patients with English as their primary language and an online secure account were the most likely to complete surveys compared with those patients with non-English as a primary language and without an online account. CONCLUSION PRO tools can be effectively used within the EMR for patients with HNC with a high response rate provided there is strong engagement from a dedicated member of the care team. This has important implications for designing clinical trials and symptom monitoring in clinical practices that incorporate EMRs.

scholarly journals Development of a new patient-reported outcome (PRO) measure on the Impact of Nighttime Urination (INTU) in patients with nocturia-Psychometric validation

2018 ◽  
Vol 37 (5) ◽  
pp. 1678-1685 ◽  
Author(s):  
Jason B. Bennett ◽  
Kristin Khalaf Gillard ◽  
Benjamin Banderas ◽  
Steven Abrams ◽  
Linda Cheng ◽  
...  
Keyword(s):  
Patient Reported Outcome ◽  
Psychometric Validation ◽  
Patient Reported ◽  
The Impact

Impact of Cancer on Family Relationships

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 687-687
Author(s):  
Craig Erker ◽  
Ke Yan ◽  
Liyun Zhang ◽  
Kristin Bingen ◽  
Julie A. Panepinto
Keyword(s):  
Cancer Therapy ◽  
Social Relationships ◽  
Family Relationships ◽  
Patient Reported Outcome ◽  
Anxiety And Depression ◽  
T Score ◽  
Patient Reported ◽  
The Family ◽  
The Difference ◽  
The Impact

Abstract Introduction: Family relationships are the subjective experience of feeling involved, important and accepted in one's family. A new patient-reported outcome (PRO) domain has been developed as part of the NIH pediatric PROMIS (patient reported outcome measurement information system) which measures for the first time the child's perspective of family relationships. Previous research has demonstrated the impact of cancer on the family from the parent's perspective. This project sought to determine the impact of cancer and cancer therapy on family relationships in children with cancer and their siblings, both on and off therapy. Our primary hypotheses were that 1) Siblings have worse family relationships compared to their brother or sister with cancer and 2) Children receiving active cancer therapy have worse family relationships compared to childhood cancer survivors. Our secondary hypothesis was that children with poor family relationships would have impairment in depression, anxiety, and social relationship domains. Methods: We conducted a cross sectional study of children with cancer and their siblings aged 8-17 years old. The children belonged to one of four groups: 1) On-therapy patients (children receiving cancer directed therapy), 2) Siblings of on-therapy patients, 3) Off-therapy patients (children who completed cancer therapy at least 6 months ago), 4) Siblings of off-therapy patients. All subjects completed the self-reported PROMIS family relationships domain and PROMIS domains of depression, anxiety, and social relationships. The family relationships domain asks questions such as: "my family and I have fun together" and "my parents listen to me". PROMIS is a validated PRO tool that uses a mean T-score of 50 and standard deviation of 10. Recently, the minimally important difference (MID) for PROMIS was estimated to be 2-3 points on the T-score scale. The Mann-Whitney test was used to test the difference between therapy groups while the Wilcoxon signed-rank test was used to test the difference between patients and siblings. Social relationships, anxiety and depression PROMIS domains were correlated to the family relationships domain using Pearson's correlations. P-values <0.05 were considered as significant. Results: One-hundred and ninety children completed the assessments. Forty-eight were on-therapy patients and 62 were off-therapy patients. Paired data included 25 pairs of on-therapy patients and siblings and 31 pairs of off-therapy patients and siblings. The median and range of age was 12[8-17] years for patients and 13[8-17] for siblings. Fifty-four percent of the children enrolled were male and 65% of patients had leukemia or lymphoma. Off-therapy siblings had lower family relationships T-score than off-therapy patients (p=0.004, median (IQR) of 44.1 (41.1, 48.6) for siblings vs. 47.4 (43.1, 53.2) for patients). Off-therapy patients had higher family relationships T-scores than on-therapy patients (p=0.042, median (IQR) of 48.6 (43.1, 53.2) for off-therapy patients vs. 46.3 (42.1, 48.6) for on-therapy patients). No significant difference was found in family relationships T-scores between on-therapy patients vs. their siblings (p=0.22) or between the two groups of siblings (p=0.58). The correlations between family relationships T-scores and depression or anxiety scores were significantly different from zero for off-therapy patients and their siblings (p<0.001 for patients and p<0.005 for siblings). Impaired family relationships were related to increased depression and anxiety. Also, the correlation between family relationships T-scores and social relationships scores were significantly different from zero for off-therapy patients (p=0.031). Worse family relationships were related to worse social relationships. Conclusion: Off-therapy patients report better family relationships than their siblings and on-therapy patients. Also worse family relationships scores often correlate with increased levels of anxiety and depression. This study provides important information for pediatric oncology staff to help identify at-risk families in need of support. Disclosures No relevant conflicts of interest to declare.

Evaluation of an online, skill-building, group intervention for patients with cancer: Pillars4Life.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 239-239
Author(s):  
Jonathan David O'Donnell ◽  
Amy Pickar Abernethy ◽  
Greg Samsa ◽  
Tina Staley ◽  
Kristin MacDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Functional Assessment ◽  
Group Intervention ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Meaningful Improvement ◽  
Patient Reported ◽  
Clinically Significant ◽  
Patient Reported Measures

239 Background: Psychosocial distress is common for those with cancer; new interventions are needed. Pillars4Life is an online educational program that teaches coping skills in a group format. What is the relationship between participation in the LiveStrong-funded Pillars4Life program and personal psychosocial outcomes? Methods: This was a longitudinal observational cohort study. Cancer patients participating in the Pillars4Life program were recruited from the 17 hospitals that received the LiveStrong Community Impact Award. Consenting participants participated in 10 weekly sessions and completed electronic surveys at baseline and 3 months. Patient reported measures included: distress [Distress Thermometer (DT), Patient Care Monitor (PCM)], depression [Patient Health Questionnaire 9 (PHQ9)], anxiety [Generalized Anxiety Disorder 7 (GAD7)], posttraumatic stress [PTSD Checklist-Civilian (PCLC)], despair (PCM), fatigue [Functional Assessment of Chronic Illness Therapy (FACIT)], and cancer-related wellbeing [Functional Assessment of Cancer Therapy-General (FACTG)] outcomes. Results: Patient participants (n=130) were: mean age 56±11 years; 87% female; 89% white; 61% married; 48% employed; 51% had breast cancer; and 63% were receiving treatment. Mean scores significantly improved from baseline to month 3 on all patient-reported outcome measures: DT (-0.9), PCM Distress (-3.0), PHQ9 (-2.3), GAD7 (-2.3), PCLC (-4.3), PCM Despair (-2.9), FACT-G (4.7), all p<.001; and FACIT-Fatigue (3.3, p=.001). Patients who reported distress at baseline (DT≥4; n=70) had clinically significant improvements (moderate to strong effect sizes ranged from 0.5 to 1.0 standard deviation units) in DT; PCM Distress, Quality of Life, and Despair; PHQ9; GAD7; PCLC; FACTG, among others. Conclusions: Participation in Pillars4Life was associated with statistically and clinically significant improvements on key psychosocial and quality of life patient-reported outcomes measures. Importantly, distressed patients experienced meaningful improvement.

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