Psychosocial distress and utilization of professional psychological care in cancer patients: An observational study in National Comprehensive Cancer Centers (CCCs) in Germany.

OBJECTIVE: The study aimed to assess cancer patients' use of psychological care and its correlates in a large sample of cancer patients in Comprehensive Cancer Centers (CCCs) in Germany. METHODS: In a multicenter study in Germany, cancer patients with various diagnoses were evaluated for self-reported use of psychological support. We measured psychological distress, depression and anxiety, quality of life, and social support with standardized questionnaires and analyzed its association with the utilization of psychological care using multivariable logistic regression. This paper focuses on a cross-sectional analysis of the data assessed during inpatient care. RESULTS: Three thousand fifty-four (50%) of hospitalized patients were asked for participation, and n = 1632 (53.6%) participated. We were able to analyze n = 1,398 (45.9%) patients. Three hundred ninety-seven (28.4%) of the sample utilized psychological support. Users of psychological care were significantly younger than nonusers (odds ratio [OR]: 0.967, P < 0.001) and were more often female (OR: 1.878, P < 0.001), whereas educational level was not associated with the use of psychological care. In the multivariable analysis, effects on the use of psychological care were observed for Hospital Anxiety and Depression Scale (HADS) anxiety (OR: 1.106, P = 0.001) and both subscales of the 12-item Short Form Health Survey (SF-12) quality of life measure (mental, OR: 0.97, P = 0.002; physical, OR: 0.97, P = 0.002). CONCLUSION: Psychological distress and anxiety are higher, and quality of life is lower in users of psychological care in comparison with nonusers during inpatient cancer treatment. Although psychooncological services should be provided to all patients who need them, special efforts should be made to reach populations that report low utilization.

Interdisciplinary counseling service for renal malignancies: a patient-centered approach to raise guideline adherence.

OBJECTIVES: Tumor boards have become an integral part of high-quality cancer care, but in general, patients are not directly involved. To overcome this weakness, we established an interdisciplinary counseling service for renal malignancies where 4 specialists talked to the patient at once. We evaluated this approach from the patients' and physicians' perspective. MATERIALS AND METHODS: For 3 months, we assessed organizational and clinical data. Within a standardized telephone interview lasting for 14 ± 8 minutes, we explored the patients' view 1 week after counseling. A focus group contributed the physicians' perspective. Costs and revenues were calculated from the hospital's perspective. RESULTS: We included 52 consecutive patients aged 62 ± 10 years. Patients' initiative for a "second opinion" triggered 37% of all appointments. Patients had localized (52%) and systemic (48%) disease presenting with primary diagnosis (48%), relapse (27%), or under continuous therapy (25%). The treatment strategy was changed significantly in 16 of 30 (53%) patients reporting a specific external opinion. The most frequent changes in recommendation were nephron-sparing surgery instead of radical nephrectomy in 8 cases and divergent judgments on restaging causing changes in systemic treatment in 6 cases. We successfully interviewed 43 of 52 patients. Overall, patients rated the consultation as very positive and only 1 patient (2%) was dissatisfied. Patients rated the quality of interpersonal interaction as very positive and said they would recommend the consultation service to others. Disease state was not associated with ratings. Physicians expressed a very positive opinion, highlighting the patients' benefit and very constructive case discussions. Nevertheless, they report remarkable efforts concerning time investment and effective coordination of medical experts. We estimated a deficit of 39 Euro per patient given the German health care system. There might be relevant secondary positive economic effects for the hospital such as recommendations from one patient to another leading to acquisition of additional patients. CONCLUSIONS: Patient involvement in multidisciplinary tumor boards is feasible and well regarded by patients and physicians likewise. By stimulating interdisciplinary collaboration, the interdisciplinary counseling service improves patient satisfaction and clinical decision making. The interdisciplinary counseling service corrected half of the external treatment plans for better guideline adherence. These positive effects come at the price of higher resource utilization. (www.germanctr.de, number DRKS00003279).

Depression, anxiety and disease-related distress in couples affected by advanced lung cancer.

OBJECTIVES: Lung cancer patients and their partners are prone to high levels of depression and anxiety or severe distress related to the poor prognosis of the illness. However, there remain doubts regarding the extent to which this distress exceeds levels in the general population. This study explored levels of depression and generalized anxiety for comparison with matched data of a representative sample from the general population. Additionally, covariance of distress between the two partners, together with disease-specific components and differences were investigated. MATERIALS AND METHODS: In a cross-sectional survey, 54 pairs of lung cancer patients and their partners (n=108) were assessed for depression and anxiety, cancer-related distress, unmet needs and disclosure in communication. Comparisons between distress levels of participating couples and matched community-comparisons (n=162) were conducted. Additionally, multilevel analysis for estimating intra-dyadic associations of anxiety and depression was computed. Components of distress, needs and aspects of communication were explored via item mean values. RESULTS: Lung cancer patients as well as their partners exhibited significantly higher levels of depression and anxiety when compared to community-based comparison subjects (patients: mean difference of 1.01 for depression with a relative risk (RR) of 4.5 and 0.84 for anxiety with RR=6.1; partners: 1.17 for depression with RR=4.6 and 1.59 for anxiety with RR=7.6). Partial intraclass correlations between patients and partners were weak (PIC=.29 for depression; PIC=.21 for anxiety). Fear of progression emerged as main component of distress for both patients and partners, although differing stressors were described. CONCLUSION: Lung cancer-affected couples exhibit levels of depression and anxiety far exceeding those of the general community. In clinical practice, patients and partners should be assessed separately for distress against the background of weak intra-dyadic associations. In cases of significant depression or anxiety, referral for psychosocial treatment is indicated and has been shown to improve quality of life.

Distress in cancer patients and their caregivers and association with the caregivers' perception of dyadic communication.

BACKGROUND: Discrepancies within cancer-affected couples can disrupt security within the dyadic relationship during cancer treatment. This study investigated the patients' and caregivers' distress and associations between the caregivers' perception of the patients' degree of open communication and their distress. PARTICIPANTS AND METHODS: In a cross-sectional survey, 189 pairs of cancer patients (31% gastrointestinal, 34% lung, 35% urological cancers) and their partners were assessed for distress (QSC-R10), depression and anxiety (PHQ-2/GAD-2). The caregivers also reported their perception of the patients' degree of disclosure regarding cancer-relevant topics (CCAT-F Disclosure subscale), caregiver strain (CSI), and unmet needs (SCNS-P&C). Prevalences of clinically significant distress were calculated. Associations were calculated between the caregivers' and the patients' ratings and between the caregivers' distress and their perception of the patients' degree of disclosure. RESULTS: 33% of the caregivers and 25% of the patients exhibited significant anxiety, with a tendency towards a higher frequency in the caregivers (p = 0.10). The prevalence of depression was lower but equally high in caregivers and patients. The caregivers' perceived non-disclosure by the patients was primarily associated with their anxiety (r = 0.31), disease-specific distress (r = 0.32), and psychological/emotional needs (r = 0.35). CONCLUSION: The identification of caregivers reporting problems in communicating with patients should be pursued in clinical practice as this might indicate that caregivers are particularly burdened.

Assessing patient-caregiver communication in cancer--a psychometric validation of the Cancer Communication Assessment Tool (CCAT-PF) in a German sample.

PURPOSE: The recently introduced Cancer Communication Assessment Tool (CCAT-PF) measures congruence in patient-caregiver communication and was initially validated in lung cancer patients. Contributing to a greater proportion of the variance in the conflict scores, primary caregivers were hypothesized to experience greater stress. For a detailed understanding of conflicting communication patterns of cancer-affected families, our study aimed for psychometric validation of the CCAT-PF in a sample covering heterogeneous tumor entities. METHODS: Subsequent to a cross-sectional survey of 189 pairs of cancer patients (31 % gastrointestinal, 34 % lung, and 35 % urological) and their caregivers' exploratory factor analysis with principal component condensation and varimax rotation was conducted (response rate, 74.2 %). Reliability and construct validity were assessed calculating Cronbach's α and Pearson correlation coefficients for CCAT-P and CCAT-F scales and related constructs, respectively. RESULTS: Cancer-related communication according to the CCAT-PF can be subdivided into four factors including the scales Disclosure, Limitation of treatment, Family involvement in treatment decisions, and Continuing treatment. Reliability ranged from α = .51-.68. The Disclosure scale, describing poor cancer-related communication of the patient, was correlated with patient's distress (QSC-R10: r = .30, p < .0001), unmet needs in several areas (SCNS-SF-34: r = .25-.32, p < .001), and negatively with social/family well-being (FACT: r = -0.31, p < .0001). Higher scores on the scale were significantly associated with considerable decrements in emotional well-being especially for caregivers perceiving patients' disclosure as problematic. CONCLUSIONS: The Disclosure scale originating from the CCAT-PF emerged as a short, valid, and reliable stand-alone instrument for identifying conflicting communication in patient-caregiver-dyads at risk.

Psychosocial support in patients with multiple myeloma at time of diagnosis: who wants what?

OBJECTIVE: The aim of this study was to examine interest in psychosocial interventions among patients with multiple myeloma at time of diagnosis as well as associated factors. METHODS: Patients with newly diagnosed multiple myeloma were recruited from our outpatient myeloma unit at the Heidelberg University Hospital. Patients completed questionnaires that included a checklist on desired psychosocial interventions and the Patient Health Questionnaire 9-item (PHQ-9) depression and Generalized Anxiety Disorder 7-item scale (GAD-7) anxiety scales. Medical data were extracted from the patients' electronic records. RESULTS: The survey was completed by 114 out of the 130 myeloma patients. Half of the patients (51%) desired psychosocial interventions. The most common preferences were relaxation techniques (21%), psychological counseling (20%), and peer support groups (18%). Approximately 24% of the patients reported symptoms of depression, and 8% reported symptoms of anxiety. Patients with symptoms of depression had twice as many preferences for psychosocial interventions as nondepressed patients. They more frequently desired individual psychotherapy (p = 0.035) and peer support groups (p = 0.015). In general, lower age was associated with greater interest in psychosocial interventions. Medical status was not strongly associated with interest in psychosocial interventions. CONCLUSIONS: A high percentage (51%) of patients with multiple myeloma has psychosocial intervention desires at the time of diagnosis. The greatest interest was found in depressed and younger patients. However, depressed patients do not prefer a single intervention form but rather show a broad variability of wishes, so 'one size does not fit all'. Therefore, to reach all patients in need, a choice of psychosocial interventions should be offered.

Quality of life after curative liver resection: a single center analysis.

AIM: To evaluate quality of life (QoL) after curative liver resection and identify variables associated with decreased QoL. METHODS: From October 2001 to July 2004, 323 patients underwent liver resection. At 3-36 mo after discharge, 188 patients were disease free. QoL was assessed using the Short Form (SF)-12 Health Survey with mental and physical component scales (SF-12 MCS and PCS), supplemented with generic questions concerning pain and liver-specific items. RESULTS: Sixty-eight percent (128/188) returned the questionnaire, which was completed in 75% (96/128) of cases. Median SF-12 PCS and MCS were 46.7 (interquartile range: 34.2-53.9) and 54.1 (42.8-58.2). Fifty percent were pain free with a median symptom score of 1.75 (1.38-2.13). PCS was higher after major hepatectomy [57% (55/96)] compared to minor resection (P = 0.0049), which represented an improved QoL. QoL was not affected by sex but by age compared to the general German population. MCS was higher after liver surgery for metastatic disease [55.9 (47.5-58.8)] compared to primary carcinoma [49.6 (36.5-55.1)] and benign disease [49.2 (37.7-56.3)] (P = 0.0317). There was no correlation between length of postoperative period and QoL. Pain, deficiencies in everyday life and a high symptom score significantly decreased MCS and PCS. CONCLUSION: Most patients were only marginally affected even after major liver resection; however, minor complications were associated with decreased SF-12 MCS and PCS and need careful attention.

Preoperative and postoperative quality of life in patients with familial adenomatous polyposis.

PURPOSE: This study was designed to prospectively examine functional outcome, quality of life, and patients' personal experiences and adjustment to functional changes during the first year after prophylactic surgery. METHODS: Twenty-one consecutive patients with familial adenomatous polyposis were examined before proctocolectomy (T0), on ileostomy reversal (T1), and 6 (T2) and 12 months (T3) after surgery by means of standardized questionnaires and interviews. RESULTS: Average physical and mental health declined profoundly after proctocolectomy, followed by a steady improvement after 6 and 12 months. The majority of patients reported the ileostomy period as particularly distressing. After one year, 75 percent of patients reported complete recovery in terms of physical, emotional, and social functioning, whereas one-quarter of patients did not regain their former level of functioning. Despite substantial improvement in pouch functions, functional impairment persists because of frequent bowel movements, resulting mainly in restricted social activities. Ten percent of patients reported impaired sex life, irrespective of gender. CONCLUSIONS: The majority of patients with familial adenomatous polyposis were found to adjust favorably to functional impairment while maintaining satisfactory quality of life. Complementing standardized quality of life measures by patients' personal experiences may help to identify vulnerable patients in need of psychosocial support.