Impact of an Automatically Generated Cancer Survivorship Care Plan on Patient-Reported Outcomes in Routine Clinical Practice: Longitudinal Outcomes of a Pragmatic, Cluster Randomized Trial.

PURPOSE: This study was conducted to longitudinally assess the impact of an automatically generated survivorship care plan (SCP) on patient-reported outcomes in routine clinical practice. Primary outcomes were patient satisfaction with information and care. Secondary outcomes included illness perceptions and health care use. METHODS: Twelve hospitals were randomly assigned to SCP care or usual care in a pragmatic, cluster randomized trial. Newly diagnosed patients with endometrial cancer completed questionnaires after diagnosis (n = 221; 75% response), 6 months (n = 158), and 12 months (n = 147). An SCP application was built in the Web-based ROGY (Registration System Oncological Gynecology). By clicking the SCP button, a patient-tailored SCP was generated. RESULTS: In the SCP care arm, 74% of patients received an SCP. They reported receiving more information about their treatment (mean [M] = 57, standard deviation [SD] = 20 v M = 47, SD = 24; P = .03), other services (M = 35, SD = 22 v M = 25, SD = 22; P = .03), and different places of care (M = 27, SD = 25 v M = 23, SD = 26; P = .04) than the usual care arm (scales, 0 to 100). However, there were no differences regarding satisfaction with information or care. Patients in the SCP care arm experienced more symptoms (M = 3.3, SD = 2.0 v M = 2.6, SD = 1.6; P = .03), were more concerned about their illness (M = 4.4, SD = 2.3 v M = 3.9, SD = 2.1; P = .03), were more affected emotionally (M = 4.0, SD = 2.2 v M = 3.7, SD = 2.2; P = .046), and reported more cancer-related contact with their primary care physician (M = 1.8, SD = 2.0 v M = 1.1, SD = 0.9; P = .003) than those in the usual care arm (scale, 1 to 10). These effects did not differ over time. CONCLUSION: The present trial showed no evidence of a benefit of SCPs on satisfaction with information and care. Furthermore, SCPs increased patients' concerns, emotional impact, experienced symptoms, and the amount of cancer-related contact with the primary care physician. Whether this may ultimately lead to more empowered patients should be investigated further.

The course of anxiety and depression for patients with Hodgkin's lymphoma or diffuse large B cell lymphoma: a longitudinal study of the PROFILES registry.

PURPOSE: The purpose of this study is to prospectively assess anxiety and depression among patients with Hodgkin lymphoma (HL) and diffuse large B cell lymphoma (DLBCL). Also, to compare its prevalence with a normative population, identify subgroups with more anxiety and depression, and assess its impact on health-related quality of life (HRQoL). METHODS: The population-based Eindhoven Cancer Registry was used to select patients diagnosed with HL or DLBCL from 1999 to 2010, 489 responded (T1). The HADS was completed four times (T1-T4), with a 1-year interval. Linear mixed-models were used to assess the course of anxiety and depression and identify high-risk subgroups. RESULTS: Both anxiety and depression were reported more often by patients compared to the normative population (p < 0.05). Over the four time points, approximately 10% of patients reported to be always and 15% reported to be sometimes anxious or depressed. Anxiety and depression did not improve in time. Patients with comorbidity and patients who were lower educated reported higher anxiety and depression scores (p < 0.05). Younger DLBCL patients reported higher anxiety scores, whereas older DLBCL patients reported higher depression scores over time (p < 0.05). Global health status/HRQoL was clinically relevant lower in patients with anxiety and depression and this appeared to be constant over time. CONCLUSION: More HL and DLBCL patients experience anxiety and depression compared to their counterparts in the general population and it did not improve in time. IMPLICATION FOR CANCER SURVIVORS: Clinicians should be aware that former lymphoma patients with anxiety and depression have a deteriorated global health status/HRQoL and refer patients to suitable aftercare when necessary.

Neutrophil Gelatinase-Associated Lipocalin and depression in patients with chronic heart failure.

Depression adversely affects prognosis in heart failure (HF) patients. Inflammation is indicated as potential biological pathway in this co-morbidity. Since increased levels of the cytokine Neutrophil Gelatinase-Associated Lipocalin (NGAL) are predictive for HF prognosis, and recently indicated in patients with major depression, this study examined the association of serum NGAL levels with symptoms of depression in patients with HF. Serum NGAL levels were measured in 104 patients with HF (left ventricular ejection fraction, LVEF⩽40). Depression, evaluated using the Beck Depression Inventory (BDI; total score, somatic and cognitive component), and the Hamilton Depression Rating scale (HAMD), at baseline and 12months follow-up, was associated with NGAL levels using mixed model analysis. Analyses were adjusted for demographics measures, disease severity indicators, inflammation, comorbidity and medication. Increased serum NGAL levels were significantly associated with depression measured by HAMD (baseline: r=0.25, p<.05) and BDI (baseline: r=0.22, p<.05; 12months: r=0.37, p<.01). This association remained significant after adjustment for covariates; age, sex, time, LVEF, and creatinine (HAMD, t=2.01, p=.047; BDI, t=2.28, p=.024). NGAL was significantly associated with somatic- (p=0.004), but not cognitive depressive symptoms (p=0.32). NGAL levels were associated with the experienced HF-related functional limitations (6min walk test), rather than the severity of cardiac dysfunction (LVEF). This study indicates that depression in patients with chronic HF is associated with elevated NGAL levels, independent of clinical severity of the underlying disease.

A high level of fatigue among long-term survivors of non-Hodgkin's lymphoma: results from the longitudinal population-based PROFILES registry in the south of the Netherlands.

The course of fatigue and quality of life in survivors of non-Hodgkin's lymphoma is unknown. The aims of this study were, therefore, to assess fatigue and quality of life in patients with non-Hodgkin's lymphoma following primary treatment, compare fatigue and quality of life in these patients with those of an age- and sex matched normative population to assess the severity of concerns and identify associations with fatigue of survivors who remained fatigued. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with non-Hodgkin's lymphoma from 1999-2009. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and the Fatigue Assessment Scale were completed once by 824 survivors of non-Hodgkin's lymphoma (80% response rate); 434 survivors completed these questionnaires again 1 year later. Survivors of non-Hodgkin's lymphoma reported more clinically relevant fatigue up till 10 years post-diagnosis compared to a normative population (P<0.001). Mean fatigue scores remained fairly stable over time (T1: x=28, SD=26; T2: x=30, SD=27, P=0.14): 22-28% of survivors reported deterioration, 19-23% reported improvement and 44-54% reported constant fatigue. Survivors who reported constant fatigue were more often diagnosed with stage IV disease and had more comorbid diseases. They were additionally more often female and divorced. Having comorbidities and being without a partner were also associated with constant fatigue in the normative population. In conclusion, six out of every ten responding non-Hodgkin's lymphoma survivors reported a high level of fatigue up till 10 years after diagnosis. Mean fatigue scores remained stable over time and survivors reporting constant fatigue more often had stage IV disease at diagnosis and comorbidities.

The minimal clinical important difference in the World Health Organization Quality of Life instrument--100.

PURPOSE: The aim of this study was to estimate the minimal clinical important difference (MCID) of the World Health Organization Quality of Life assessment instrument (WHOQOL-100) for women with early-stage breast cancer. If the MCID is known, then the instrument is also useful for individual patients and thus useful in clinical practice. In this study, the MCID is the smallest change in quality of life (QOL) scores considered clinically relevant for patients. METHODS: Data were derived from a prospective study in which 223 women with early-stage breast cancer and 383 women with benign breast problems completed the WHOQOL-100. MCID values were determined by two distribution-based methods (0.5 standard deviation (SD) and 1 standard error of measurement (SEM)) and an anchor-based method. RESULTS: For 0.5 SD, MCID estimates ranged from 0.64 to 0.94, and for 1 SEM, MCID estimates ranged from 0.69 to 1.18. The anchor-based approach resulted in MCID estimates ranging from -1.56 to -0.71 for decline and from 0.51 to 1.27 for improvement. CONCLUSION: A change in score of 1 on the WHOQOL-100 is proposed as the MCID for women with early-stage breast cancer.