Disease burden of Crigler-Najjar syndrome: Systematic review and future perspectives.

BACKGROUND AND AIM: Crigler-Najjar syndrome (CNS) results from biallelic mutations of UGT1A1 causing partial or total loss of uridine 5'-diphosphate glucuronyltransferase activity leading to unconjugated hyperbilirubinemia and its attendant risk for irreversible neurological injury (kernicterus). CNS is exceedingly rare and has been only partially characterized through relatively small studies, each comprising between two and 57 patients. METHODS: A systematic literature review was conducted to consolidate data on the patient, caregiver, and societal burden of CNS. RESULTS: Twenty-eight articles on clinical aspects of CNS were identified, but no published data on its humanistic or economic burden were found. In patients with complete UGT1A1 deficiency (type 1 CNS [CNS-I]), unconjugated bilirubin levels increase 3-6 mg/dL/day during the newborn period and reach neurologically dangerous levels between 5 and 14 days of age. Phototherapy is the mainstay of treatment but poses significant challenges to patients and their families. Despite consistent phototherapy, patients with CNS-I have worsening hyperbilirubinemia with advancing age. Liver transplantation is the only definitive therapy for CNS-I and is increasingly associated with excellent long-term survival but also incurs high costs, medical and surgical morbidities, and risks of immunosuppression. CONCLUSIONS: Crigler-Najjar syndrome is associated with a substantial burden, even with existing standards of care. The development of novel disease-modifying therapies has the potential to reduce disease burden and improve the lives of CNS patients and their families.

Sarcopenia supersedes subjective global assessment as a predictor of survival in colorectal cancer.

BACKGROUND: Sarcopenia, the presence of skeletal muscle mass depletion, can be objectively quantified, whereas subjective global assessment (SGA) is a widely utilized subjective instrument to assess nutritional status. Both the presence of sarcopenia and SGA-assessed malnutrition, in isolation, have been shown to be associated with worse overall survival in a wide range of cancers. However, there is no research evaluating the independent prognostic significance of both the presence of sarcopenia and malnutrition as part of the same analysis. We investigated the impact of sarcopenia on overall survival in colorectal cancer specifically controlling for malnutrition. METHODS: We examined a consecutive case series of 112 patients with colorectal cancer first seen at our institution between August 2012 and October 2017. Using computed tomography (CT) imaging, the cross-sectional area of muscles at the L3 vertebral level was measured and then divided by height squared to calculate skeletal muscle index (SMI). Sarcopenia was defined as SMI ≤38.5 cm2/m2 for women and ≤52.4 cm2/m2 for men. SGA assessments were completed within 2 weeks of CT imaging. The association of sarcopenia and malnutrition with overall survival was assessed using univariate and multivariate Cox regression analysis. RESULTS: Median age at presentation was 53.3 years. Sixty-six (58.9%) patients had metastatic disease at diagnosis. Using SMI, 46 (41.1%) patients were sarcopenic, while 66 (58.9%) were non-sarcopenic. Using SGA, 69 (61.6%) patients were assessed as well-nourished, while 43 (38.4%) were malnourished. Of 69 patients classified as well-nourished by SGA, 22 (31.9%) were sarcopenic. Similarly, of 43 patients categorized as malnourished by SGA, 19 (44.2%) were non-sarcopenic. On multivariate analysis, after adjusting for age, gender, tumor stage, BMI, treatment history and SGA, patients with sarcopenia had 3 times greater risk of mortality compared to those without sarcopenia (p = 0.001). The median survival of patients with both sarcopenia and malnutrition (n = 24) was 14.6 months (95% CI: 10.5 to 18.6) compared to the median survival of 25.9 months (95% CI: 7.8 to 44.0) in patients who were either sarcopenic or malnourished but not both (n = 41; p = 0.001). The median survival of patients who were non-sarcopenic and well nourished (n = 48; p = 0.001) was 38.6 months (95% CI: 25.6 to 51.6). CONCLUSIONS: The exploratory study suggests that presence of sarcopenia supersedes the presence of malnutrition as a predictor of survival in colorectal cancer. Co-existence of sarcopenia and malnutrition is associated with worse survival in colorectal cancer compared to just one of those conditions being present. Prospective studies with large sample sizes are needed to confirm these findings.

A Systematic Review of the Health Economics of Pompe Disease.

BACKGROUND: Pompe disease is a rare, severe neuromuscular disease with high mortality and substantial clinical and humanistic burden. However, the economic burden of Pompe disease and the health economic value of its treatments are not well understood. The objectives of this systematic review were to characterize the health economic evidence on Pompe disease, including healthcare resource use and costs (direct and indirect), health utilities, and the cost-effectiveness of current treatments used to manage patients with Pompe disease. METHODS: A systematic search of MEDLINE® and Embase® was performed to retrieve publications on the health economics of Pompe disease. Publications were screened according to predefined criteria, extracted, and quality assessed using the Newcastle-Ottawa Scale. Data were narratively synthesized. RESULTS: Eight publications evaluated patients with infantile-onset Pompe disease (IOPD) (two studies), late-onset Pompe disease (LOPD) (four studies), or both (two studies). In IOPD, total cost of supportive therapy (excluding treatment) was €32,871 (equivalent to US$41,667 when adjusted for currency and inflation to 2017 US dollars) over a life expectancy of 0.4 years. In adult LOPD, the average annual cost per patient of supportive therapy was €22,475 (adjusted $28,489). Resource use in LOPD was high, with nursing home admissions accounting for 19% of annual direct medical costs. Health economic evaluations estimating incremental costs per quality-adjusted life year (QALY) gained with enzyme-replacement therapy (ERT) versus supportive therapy ranged from £109,991 (adjusted, $186,851) per QALY gained in Columbia to €1,043,868 (adjusted, $1,323,207) in the Netherlands. DISCUSSION: Despite a full systematic literature search, only eight relevant publications were identified, most of which were of relatively poor quality. However, a significant economic burden of Pompe disease on patients, families, healthcare systems, and society was found, with the majority of costs driven by the only currently approved treatment, ERT. Health economic evaluations of ERT versus supportive therapy vary significantly, with the majority well above willingness-to-pay thresholds. New therapies and approaches to care are needed to address the persistent and lifelong economic burden of Pompe disease and the large incremental cost-effectiveness ratios observed.

Outcomes of systematic nutritional assessment and medical nutrition therapy in pancreatic cancer.

OBJECTIVES: We investigated the nutritional and survival outcomes of medical nutrition therapy by a registered dietitian, along with support from a dedicated nutrition and metabolic support team in pancreatic cancer patients requiring enteral or parenteral nutrition. METHODS: Subjective global assessment (SGA) was used to assess nutritional status in 304 pancreatic cancer patients. Using baseline and last SGA, patients were categorized into 3 groups: improved SGA, deteriorated SGA, and unchanged SGA. Kaplan-Meier and Cox regression were used to calculate survival after controlling for relevant confounders. RESULTS: One-hundred twenty-five (41.1%) patients had their SGA unchanged, 87 (28.6%) patients had "improved SGA," whereas 92 (30.3%) patients had "deteriorated SGA." On univariate survival analysis, the median survival was 7.8, 11.2, and 12.6 months for deteriorated, unchanged, and improved SGA groups, respectively. On multivariate analysis, change in SGA was independently predictive of survival. Patients with deteriorated SGA had 1.5 times (95% confidence interval, 1.1-2.1) greater risk of mortality compared to those with improved SGA. CONCLUSIONS: The majority of pancreatic cancer patients (70%) in our study either maintained or improved their nutritional status during cancer treatment. Improvement in SGA correlated with a significantly decreased risk of mortality independent of sex, previous treatment history, and evidence of biological anticancer activity.

Value of an intraoperative real time tissue perfusion assessment system following a nipple-sparing radical mastectomy for advanced breast cancer.

INTRODUCTION: Standard surgical approach for advanced breast cancer is a modified radical mastectomy with a periareolar elliptical incision. Here a unique surgical approach is presented utilizing intraoperative real time tissue perfusion technology. PRESENTATION OF CASE: A 65-year old African American female was diagnosed with grade 3 papillary carcinoma on biopsy of a palpable 3.7cm left breast mass at 12 o'clock position. Pathology showed a T2N0M0 invasive ductal carcinoma, triple negative disease, with clear margins. Patient opted for naturopathic treatment. Six months later, cancer recurred at the local site; the patient persisted with natural remedies. Nine months later, the mass had progressed to 14.5cm with smaller adjacent nodules and nodular thickening of breast with no metastatic disease. Patient received neoadjuvant chemoradiation. Ten months later, patient underwent a nipple-sparing radical mastectomy given the persistent pectoral muscle involvement of this mass. DISCUSSION: An elliptical incision was made in the superior aspect of the breast wall at least 6cm above the areola. After tumor removal, the skin edges were approximated. It was decided preoperatively to use the SPY Elite™ system to assess perfusion of the flap edges. Angiography with indocyanine green showed poor perfusion of the inferior flap and an additional 2cm of skin was resected. Final pathology showed that all margins were clear of disease and patient recovered well from surgery. CONCLUSION: This case study shows that an individualized approach resulted in an optimal outcome for the patient. The infrequent procedure of a nipple-sparing radical mastectomy was done in coordination with SPY Elite™ to achieve good wound healing.

The use of failure mode and effect analysis in a radiation oncology setting: the Cancer Treatment Centers of America experience.

Delivering radiation therapy in an oncology setting is a high-risk process where system failures are more likely to occur because of increasing utilization, complexity, and sophistication of the equipment and related processes. Healthcare failure mode and effect analysis (FMEA) is a method used to proactively detect risks to the patient in a particular healthcare process and correct potential errors before adverse events occur. FMEA is a systematic, multidisciplinary team-based approach to error prevention and enhancing patient safety. We describe our experience of using FMEA as a prospective risk-management technique in radiation oncology at a national network of oncology hospitals in the United States, capitalizing not only on the use of a team-based tool but also creating momentum across a network of collaborative facilities seeking to learn from and share best practices with each other. The major steps of our analysis across 4 sites and collectively were: choosing the process and subprocesses to be studied, assembling a multidisciplinary team at each site responsible for conducting the hazard analysis, and developing and implementing actions related to our findings. We identified 5 areas of performance improvement for which risk-reducing actions were successfully implemented across our enterprise.

Prognostic value of changes in quality of life scores in prostate cancer.

BACKGROUND: Several studies in the oncology literature have demonstrated the prognostic value of baseline quality of life (QoL). We investigated whether changes in QoL could predict survival in prostate cancer patients. METHODS: We evaluated 250 prostate cancer patients treated at our institution between Jan 2001 and Dec 2009 who were available for a minimum follow-up of 3 months. QoL was evaluated at baseline and after 3 months of treatment initiation using EORTC-QLQ-C30. Cox regression evaluated the prognostic significance of baseline and changes in QoL scores after adjusting for relevant clinical and demographic variables. RESULTS: Median overall survival was 89.1 months (95% CI: 56.5-121.7). Baseline QoL scale predictive of survival upon multivariate analysis was fatigue (p = 0.001). Associations between changes in QoL and survival, upon multivariate analysis, were observed for dyspnea and cognitive functioning. Every 10-point increase (worsening) in dyspnea was associated with a 16% increased risk of death (HR = 1.16; 95% CI = 1.02 to 1.30, p = 0.02), and every 10-point increase (improvement) in cognitive functioning was associated with a 24% decreased risk of death (HR = 0.76; 95% CI = 0.54 to 0.98, p = 0.04). CONCLUSIONS: This study provides preliminary evidence to indicate that prostate cancer patients with better baseline fatigue and patients whose dyspnea and cognitive functioning improves within 3 months of treatment are at a significantly decreased risk of mortality.

Longitudinal health-related quality of life assessment: implications for prognosis in ovarian cancer.

BACKGROUND: There is no information in the literature on the impact of changes in quality of life (QoL) scores on prognosis in ovarian cancer. We investigated whether changes in QoL during treatment could predict survival in ovarian cancer patients. METHODS: We evaluated 137 ovarian cancer patients treated at our institution between Jan 2001 and Dec 2009 who were available for a minimum follow-up of 3 months. QoL was evaluated at baseline and after 3 months of treatment using EORTC-QLQ-C30. Cox regression evaluated the prognostic significance of baseline and changes in QoL scores after adjusting for clinical and demographic variables. RESULTS: Associations between changes in QoL and survival were observed for global function, appetite loss and constipation. Every 10-point increase (improvement) in global function from baseline to 3 months was associated with a 10% decreased risk of death (HR=0.90; 95% CI: 0.81 to 0.99, p=0.03). The corresponding HRs for 10-point increase (deterioration) in appetite loss and constipation scales were 1.20 (95% CI: 1.06 to 1.35; p=0.005) and 1.13 (95% CI: 1.02 to 1.24; p=0.02) respectively. CONCLUSIONS: This exploratory study provides evidence that an improvement in appetite, constipation and global health scores during the first 3 months of treatment is significantly associated with improved survival time in ovarian cancer. These findings justify serial, systematic assessment of global health, appetite and constipation in ovarian cancer patients being treated, and suggest that modalities designed to improve these functions may be beneficial clinically.

Longitudinal health-related quality of life assessment implications for prognosis in stage IV pancreatic cancer.

OBJECTIVES: We investigated whether changes in quality of life (QoL) during treatment could predict survival in stage IV pancreatic cancer. METHODS: Quality of life was evaluated at baseline and after 3 months of treatment using European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) in 186 patients with stage IV pancreatic cancer. Cox regression evaluated the prognostic significance of baseline and changes in QoL scores after adjusting for age, sex, and treatment history. RESULTS: One hundred twenty-one patients were males and 65 were females. One hundred twenty-seven patients' condition was newly diagnosed, whereas 59 were previously treated. The mean age at diagnosis was 55.1 years. Baseline QoL scale predictive of survival upon multivariate analysis was global health (hazard ratio, 0.88; 95% confidence interval, 0.81-0.95; P = 0.001). On multivariate analysis, QoL change variable that was significantly predictive of survival after 3 months of treatment was cognitive function (hazard ratio, 0.89; 95% confidence interval, 0.79-0.99; P = 0.04). CONCLUSIONS: This study provides preliminary evidence to indicate that patients with stage IV pancreatic cancer who have a better global health at baseline as well as those whose cognitive function improves within 3 months of treatment have a significantly increased probability of survival.

Predicting survival in prostate cancer: the role of quality of life assessment.

PURPOSE: While the use of quality of life (QoL) assessment has been increasing in clinical oncology, few studies have examined its prognostic significance in prostate cancer. We investigated the association between QoL at presentation and survival in prostate cancer. METHODS: We retrospectively reviewed 673 patients treated at two single-system cancer centers between January 2001 and December 2008. QoL was evaluated using EORTC-QLQ-C30. Patient survival was defined as the time interval between the date of first patient visit and the date of death/date of last contact. Univariate and multivariate Cox regression was performed to evaluate the prognostic significance of QoL. RESULTS: Mean age at presentation was 63.2 years. Patient stage of disease at diagnosis was I, 4; II, 464; III, 76; IV, 107; and 22 indeterminate. Median overall survival was 89.1 months (95% CI: 46.1-132.0). QoL scales predictive of survival upon univariate analysis were physical, role, emotional, social, fatigue, nausea/vomiting, pain, dyspnea, insomnia, loss of appetite, and constipation (p < 0.01 for all). Multivariate analyses found fatigue (p = 0.02) and constipation (p = 0.01) to be significantly associated with survival. CONCLUSIONS: Baseline QoL provides useful prognostic information in prostate cancer. These findings have important implications for patient stratification in clinical trials and may aid decision making in clinical practice.

The prognostic role of quality of life assessment in breast cancer.

While the use of quality of life (QoL) assessments has been increasing in oncology, few studies have examined the prognostic significance of QoL in breast cancer. We investigated the association between QoL at presentation and survival in breast cancer. We examined 1,511 breast cancer patients treated at two single-system cancer centers between January 2001 and December 2008. QoL was evaluated using the validated survey instrument EORTC-QLQ-C30. Patient survival was defined as the time interval between the date of first patient visit and the date of death from any cause/date of last contact. Univariate and multivariate Cox regression analyses were performed to evaluate the prognostic significance of QoL after controlling for the effects of age, tumor stage, and prior treatment history. Mean age at presentation was 52.5 years. There were 590 analytic and 921 non-analytic patients. Patient stage of disease at diagnosis was I, 335; II, 591; III, 290; IV, 159; and 136 indeterminate. Median overall survival was 32.8 months (95% CI: 27.6-38.0). On univariate analysis, QoL function and symptom scales that were predictive of survival were physical (p < 0.001), role (p < 0.001), cognitive (p = 0.003), social (p < 0.001), fatigue (p < 0.001), nausea/vomiting (p < 0.001), pain (p < 0.001), dyspnea (p < 0.001), loss of appetite (p < 0.001), and constipation (p < 0.001). On multivariate analyses, only role function (degree of impairment of work and/or leisure/hobby related activities) was significantly associated with survival. This study suggests that baseline QoL (in particular, the role function) provides useful prognostic information in breast cancer.

Quality of life assessment as a predictor of survival in non-small cell lung cancer.

BACKGROUND: There are conflicting and inconsistent results in the literature on the prognostic role of quality of life (QoL) in cancer. We investigated whether QoL at admission could predict survival in lung cancer patients. METHODS: The study population consisted of 1194 non-small cell lung cancer patients treated at our institution between Jan 2001 and Dec 2008. QoL was evaluated using EORTC-QLQ-C30 prior to initiation of treatment. Patient survival was defined as the time interval between the date of first patient visit and the date of death from any cause/date of last contact. Univariate and multivariate Cox regression evaluated the prognostic significance of QoL. RESULTS: Mean age at presentation was 58.3 years. There were 605 newly diagnosed and 589 previously treated patients; 601 males and 593 females. Stage of disease at diagnosis was I, 100; II, 63; III, 348; IV, 656; and 27 indeterminate. Upon multivariate analyses, global QoL as well as physical function predicted patient survival in the entire study population. Every 10-point increase in physical function was associated with a 10% increase in survival (95% CI = 6% to 14%, p < 0.001). Similarly, every 10-point increase in global QoL was associated with a 9% increase in survival (95% CI = 6% to 11%, p < 0.001). Furthermore, physical function, nausea/vomiting, insomnia, and diarrhea (p < 0.05 for all) in newly diagnosed patients, but only physical function (p < 0.001) in previously treated patients were predictive of survival. CONCLUSIONS: Baseline global QoL and physical function provide useful prognostic information in non-small cell lung cancer patients.

Actigraphic assessment of daily sleep-activity pattern abnormalities reflects self-assessed depression and anxiety in outpatients with advanced non-small cell lung cancer.

OBJECTIVES: We measured subjectively evaluated depression and anxiety, and objectively measured daily sleep-activity patterns in inpatients and outpatients with advanced non-small cell lung cancer (NSCLC) and determined whether cancer-associated depression and anxiety are accompanied by characteristic circadian rhythm abnormalities. METHODS: Equal numbers of inpatients (n=42) and outpatients (n=42) with advanced NSCLC were studied. Baseline depression and anxiety, assessed by the Hospital Anxiety and Depression Scale (HADS), and actigraphy were recorded before chemotherapy initiation. The effects of the presence and severity of chronic obstructive pulmonary disease (COPD) on depression, anxiety, and actigraphy were assessed only among the 42 outpatients. RESULTS: Anxiety occurred in 40% and depression in 25% of these lung cancer patients, equally among inpatients and outpatients. All patients suffer extremely disturbed daily sleep-activity cycles but each patient also maintains some degree of circadian organization. Outpatients maintain more robust daily activity patterns and longer, more consolidated nighttime sleep compared with inpatients. The more disrupted the daily sleep-activity rhythm, the worse the depression and/or anxiety scores for outpatients. These relationships are obscured among inpatients. COPD has no independent measurable effects on the daily organization of sleep-activity, depression, or anxiety. CONCLUSIONS: Lung cancer patients whose diurnal activity is disturbed by prolonged and frequent sedentary episodes and whose sleep is disturbed by frequent and prolonged waking are most anxious and depressed. These findings and relationships are masked by hospitalization. Since diurnal exercise improves both sleep and mood, it is reasonable to test whether enhancing daytime activity and nighttime sleep can diminish cancer-associated depression.

Patient satisfaction with quality of life as a prognostic indicator in ovarian cancer patients treated in an integrative treatment setting.

Extensive data show that quality of life (QoL) tools measuring the activities of daily life provide prognostic information in cancer. Ferrans and Powers Quality of Life Index (QLI) is an instrument measuring patients' satisfaction with their life. This study evaluated the association between QLI and survival in ovarian cancer. We examined a consecutive case series of 90 patients with histologically confirmed stage I-IV ovarian cancer treated at Cancer Treatment Centers of America. QLI measures overall QoL and QoL in four major subscales: Health and Physical, Social and Economic, Psychological and Spiritual, and Family. The Kaplan-Meier method was used to calculate survival. Multivariate Cox regression analyses were then performed to evaluate the joint prognostic significance of QoL and clinical factors. The Health and Physical subscale was marginally statistically significant (p = .08) after controlling for stage at diagnosis, prior treatment history, and other QLI subscales. Our study has demonstrated no statistically significant prognostic association of patient satisfaction with QoL, as measured by the QLI, with survival in ovarian cancer.

Can subjective global assessment of nutritional status predict survival in ovarian cancer?

BACKGROUND: Malnutrition is a significant problem in patients with ovarian cancer. The goal of this study was to investigate the prognostic role of Subjective Global Assessment (SGA) in patients with ovarian cancer treated in an integrative cancer treatment setting. METHODS: We evaluated a case series of 132 ovarian cancer patients treated at Cancer Treatment Centers of America(R) from Jan 2001 to May 2006. SGA was used to assess nutritional status at baseline. Using SGA, patients were classified as well nourished (SGA A), moderately malnourished (SGA B) or severely malnourished (SGA C). Kaplan Meier method was used to calculate survival. Cox proportional hazard models were constructed to evaluate the prognostic effect of SGA independent of other factors. RESULTS: Of 132 patients, 24 were newly diagnosed while 108 had received prior treatment. 15 had stage I disease at diagnosis, 8 stage II, 85 stage III and 17 stage IV. The median age at presentation was 54.4 years (range 25.5 - 82.5 years). 66 patients were well-nourished (SGA A), 35 moderately malnourished (SGA B) and 31 severely malnourished (SGA C). Well nourished patients had a median survival of 19.3 months (95% CI: 14.1 to 24.5), moderately malnourished 15.5 months (95% CI: 5.8 to 25.1), and severely malnourished 6.7 months (95% CI: 4.1 to 9.3); the difference being statistically significant (p = 0.0003). Multivariate Cox modeling, after adjusting for stage at diagnosis and prior treatment history found that moderately malnourished and severely malnourished status were associated with a relative risk of 2.1 (95% CI: 1.2 to 3.6, p = 0.008) and 3.4 (95% CI: 1.9 to 5.8, p < 0.001) respectively as compared to well nourished status. CONCLUSION: Univariate and multivariate survival analyses found that low SGA scores (i.e. well-nourished status) are associated with better survival outcomes. This study lends support to the role of aggressive nutritional intervention in improving patient outcomes in cancer care.

The relationship between bioelectrical impedance phase angle and subjective global assessment in advanced colorectal cancer.

BACKGROUND: Bioelectrical Impedance (BIA) derived phase angle is increasingly being used as an objective indicator of nutritional status in advanced cancer. Subjective Global Assessment (SGA) is a subjective method of nutritional status. The objective of this study was to investigate the association between BIA derived phase angle and SGA in advanced colorectal cancer. METHODS: We evaluated a case series of 73 stages III and IV colorectal cancer patients. Patients were classified as either well-nourished or malnourished using the SGA. BIA was conducted on all patients and phase angle was calculated. The correlation between phase angle and SGA was studied using Spearman correlation coefficient. Receiver Operating Characteristic curves were estimated using the non-parametric method to determine the optimal cut-off levels of phase angle. RESULTS: Well-nourished patients had a statistically significantly higher (p = 0.005) median phase angle score (6.12) as compared to those who were malnourished (5.18). The Spearman rank correlation coefficient between phase angle and SGA was found to be 0.33 (p = 0.004), suggesting better nutritional status with higher phase angle scores. A phase angle cut-off of 5.2 was 51.7% sensitive and 79.5% specific whereas a cut-off of 6.0 was 82.8% sensitive and 54.5% specific in detecting malnutrition. Interestingly, a phase angle cut-off of 5.9 demonstrated high diagnostic accuracy in males who had failed primary treatment for advanced colorectal cancer. CONCLUSION: Our study suggests that bioimpedance phase angle is a potential nutritional indicator in advanced colorectal cancer. Further research is needed to elucidate the optimal cut-off levels of phase angle that can be incorporated into the oncology clinic for better nutritional evaluation and management.

Perceived cancer-related financial difficulty: implications for patient satisfaction with quality of life in advanced cancer.

GOALS OF WORK: Cancer and its treatment often lead to financial difficulty in patients with advanced cancer. The goal of this study was to investigate the relationship between perceived cancer-related financial difficulty and patient satisfaction with quality of life (QoL) in advanced cancer. MATERIALS AND METHODS: A case series of 954 cancer patients treated at Cancer Treatment Centers of America, a private tertiary care oncology facility in the USA, was investigated. Perceived financial difficulty was measured using the QLQ-C30 financial difficulty subscale. Patient satisfaction with QoL was measured using the Ferrans and Powers Quality of Life Index (QLI). The relationship between perceived financial difficulty and QLI was evaluated using multivariate analysis of variance and multiple regression analysis. RESULTS: Of 954 patients, 579 were women and 375 were men, with the median age at presentation of 56 years (range 20-90 years). Sixty-six percent did not respond to prior treatment. Most common cancers were breast (26%), colorectal (19%), and lung (16%). Two hundred ninety-six (31%) patients perceived their financial condition as poor. Every 10-year increase in current age was significantly associated with a decline in all QLI subscales except for family subscale. Newly diagnosed patients had significantly better QLI scores for all subscales as compared to those who did not respond to definitive treatment elsewhere before coming to our hospital. After controlling for the effects of age and treatment history, every 10-unit increase in perceived financial difficulty score was statistically significantly associated with 0.52, 0.36, 0.32, 0.24, and 0.40 unit decline in QLI health/physical, social/economic, psychological/spiritual, family, and overall function score, respectively. CONCLUSIONS: We found that perceived financial difficulty is strongly correlated with patient satisfaction with QoL in advanced cancer. These findings indicate a need for the providers of cancer care to be aware that nonclinical factors such as perceived financial difficulty can have an important bearing on QoL of cancer patients.