Distress in hospitalized cancer patients: Associations with personality traits, clinical and psychosocial characteristics.

OBJECTIVE: To improve allocation of psychosocial care and to provide patient-oriented support offers, identification of determinants of elevated distress is needed. So far, there is a lack of evidence investigating the interplay between individual disposition and current clinical and psychosocial determinants of distress in the inpatient setting. METHODS: In this cross-sectional study, we investigated 879 inpatients with different cancer sites treated in a German Comprehensive Cancer Center. Assessment of determinants of elevated distress included sociodemographic, clinical and psychosocial characteristics as well as dimensions of personality. Multiple linear regression was applied to identify determinants of psychosocial distress. RESULTS: Mean age of the patients was M = 61.9 (SD = 11.8), 48.1% were women. In the multiple linear regression model younger age (ß = -0.061, p = 0.033), higher neuroticism (ß = 0.178, p = <0.001), having metastases (ß = 0.091, p = 0.002), being in a worse physical condition (ß = 0.380, p = <0.001), depressive symptoms (ß = 0.270, p = <0.001), not feeling well informed about psychological support (ß = 0.054, p = 0.046) and previous uptake of psychological treatment (ß = 0.067, p = 0.020) showed significant associations with higher psychosocial distress. The adjusted R2 of the overall model was 0.464. CONCLUSION: Controlling for sociodemographic characteristics and dispositional vulnerability, that is neuroticism, current clinical and psychosocial characteristics were still associated with hospitalized patients' psychosocial distress. Psycho-oncologists should address both, the more transient emotional responses, such as depressive symptoms, as well as more enduring patient characteristics, like neuroticism.

Experience of Time and Subjective Age When Facing a Limited Lifetime: The Case of Older Adults with Advanced Cancer.

OBJECTIVES: We addressed two questions: (1) Does advanced cancer in later life affect a person's awareness of time and their subjective age? (2) Are awareness of time and subjective age associated with distress, perceived quality of life, and depression? METHODS: We assessed patients suffering terminal cancer (OAC, n = 91) and older adults free of any life-threatening disease (OA, n = 89), all subjects being aged 50 years or older. RESULTS: Older adults with advanced cancer perceived time more strongly as being a finite resource and felt significantly older than OA controls. Feeling younger was meaningfully related with better quality of life and less distress. In the OA group, feeling younger was also associated to reduced depression. Perceiving time as a finite resource was related to higher quality of life in the OA group. DISCUSSION: Major indicators of an older person's awareness of time and subjective aging differ between those being confronted with advanced cancer versus controls.

"Often Relatives are the Key [ ]" -Family Involvement in Treatment Decision Making in Patients with Advanced Cancer Near the End of Life.

BACKGROUND: Family communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists' and nurses' perceptions of family involvement in decision making about forgoing cancer-specific treatment in patients with advanced cancer. MATERIALS AND METHODS: Qualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life. RESULTS: We could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients' autonomy: (a) a patient-focused approach in which a patient's independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients' family in decision making and strived for building consensus and resolving conflicts. CONCLUSION: The main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient's family in understanding of a patient's incurable condition and to identify a patient's preference for therapy. IMPLICATIONS FOR PRACTICE: This study focused on oncologists' and oncology nurses' perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients' emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.

Post-transplant multimorbidity index and quality of life in patients with chronic graft-versus-host disease-results from a joint evaluation of a prospective German multicenter validation trial and a cohort from the National Institutes of Health.

Comorbidity after allogeneic hematopoietic stem cell transplantation (alloHSCT) impairs quality of life (QoL), physical functioning, and survival. We developed a new standardized measure to capture comorbidity after transplantation, the Post-transplant Multimorbidity Index (PTMI) in a cohort of 50 long term survivors. We subsequently evaluated the content validity and impact on survival and QoL within a multicenter trial, including 208 patients (pts) after alloHSCT, who were prospectively evaluated applying the FACT-BMT, the Human Activity Profile (HAP), the SF-36 v.2, PTMI and the Hematopoietic Cell Transplantation-Comorbidity Index (HCT-CI). The most prevalent comorbidities were compensated arterial hypertension (28.4%), ambulatory infections (25.5%), iron overload (23%), mild renal function impairment (20%), and osteoporosis (13%). Applying the PTMI 13% of patients had no comorbidity, while 37.1% had 1-3 comorbidities, 27.4% had 4-6 comorbidities, and 13.5% had > 6 comorbidities. Chronic graft-versus-host disease (cGvHD) was significantly associated with the PTMI, while age and prior acute GvHD were not. In contrast, the HCT-CI was not associated with the presence of cGvHD. cGvHD was significantly associated with depression (r = 0.16), neurological disease (r = 0.21), osteoporosis (r = 0.18) and nonmelanoma skin cancer (r = 0.26). The PTMI demonstrated strong measurement properties and compared to the HCT-CI captured a wider range of comorbidities associated with cGvHD.

Late decisions about treatment limitation in patients with cancer: empirical analysis of end-of-life practices in a haematology and oncology unit at a German university hospital.

BACKGROUND: Decisions to limit treatment (DLTs) are important to protect patients from overtreatment but constitute one of the most ethically challenging situations in oncology practice. In the Ethics Policy for Advance Care Planning and Limiting Treatment study (EPAL), we examined how often DLT preceded a patient's death and how early they were determined before (T1) and after (T2) the implementation of an intrainstitutional ethics policy on DLT. METHODS: This prospective quantitative study recruited 1.134 patients with haematological/oncological neoplasia in a period of 2×6 months at the University Hospital of Munich, Germany. Information on admissions, discharges, diagnosis, age, DLT, date and place of death, and time span between the initial determination of a DLT and the death of a patient was recorded using a standardised form. RESULTS: Overall, for 21% (n=236) of the 1.134 patients, a DLT was made. After implementation of the policy, the proportion decreased (26% T1/16% T2). However, the decisions were more comprehensive, including more often the combination of 'Do not resuscitate' and 'no intense care unit' (44% T1/64% T2). The median time between the determination of a DLT and the patient's death was similarly short with 6 days at a regular ward (each T1/T2) and 10.5/9 (T1/T2) days at a palliative care unit. For patients with solid tumours, the DLTs were made earlier at both regular and palliative care units than for the deceased with haematological neoplasia. CONCLUSION: Our results show that an ethics policy on DLT could sensitise for treatment limitations in terms of frequency and extension but had no significant impact on timing of DLT. Since patients with haematological malignancies tend to undergo intensive therapy more often during their last days than patients with solid tumours, special attention needs to be paid to this group. To support timely discussions, we recommend the concept of advance care planning.

Factors associated with the decline of psychological support in hospitalized patients with cancer.

OBJECTIVE: Many distressed cancer patients do not want or, finally, do not use psychological support. This study aimed at identifying factors associated with the decline of psychological support during hospital stay. METHODS: This cross-sectional study included inpatients with different cancer diagnoses. Distress was assessed using the short form of the Questionnaire on Stress in Cancer Patients-Revised (QSC-R10) and the Distress Thermometer (DT). Multivariable logistic regression was used to identify factors associated with decline. RESULTS: Of 925 patients, 71.6% (n = 662) declined psychological support. Male sex (OR = 2.54, 95% CI = 1.69-3.80), low psychosocial distress (OR = 3.76, CI = 2.50-5.67), not feeling depressed (OR = 1.93, CI = 1.24-2.99), perceived overload (OR = 3.37, CI = 2.19-5.20), no previous psychological treatment (OR = 1.88, CI = 1.25-2.83), and feeling well informed about psychological support (OR = 1.66, CI = 1.11-2.46) were associated with decline. Among the patients who indicated clinical distress (46.2%), 53.9% declined psychological support. Male sex (OR = 2.96, CI = 1.71-5.12), not feeling depressed (OR = 1.87, CI = 1.12-3.14), perceived overload (OR = 5.37, CI = 3.07-9.37), agreeableness (OR = 0.70, CI = 0.51-0.95), and feeling well informed about psychological support (OR = 1.81, CI = 1.07-3.07) were uniquely associated with decline in this subgroup. CONCLUSIONS: Decline of psychological support is primarily due to psychological factors. Feeling well informed about support emerged as a relevant factor associated with decline. Thus, design of informational material and education about available psychological services seem crucial.

Cancer Patients' Preferences for either Quality of Life or a Longer Life Determine Their Willingness to Talk about Forgoing Cancer-Specific Treatment.

BACKGROUND: Cancer patients often face decisions whether to proceed with cancer-specific treatment or to switch to best supportive care. In these decisions, patients' preferences should be determining cornerstones. The aim of this survey was to elicit patients' preferences regarding discussions about forgoing treatment and factors influencing their preferences. METHODS: We surveyed 194 patients at the National Center for Tumor Diseases, Germany. Quality of life (FACT-G), cancer-specific distress (QSC-R10), anxiety/depression (PHQ-4/GAD-2), preferences regarding quality/length of life (QQ), patient-physician communication (CARES-SF), and family role (CCAT-P) were assessed. RESULTS: Patients weighting quality of life over lifetime wanted their oncologists to address treatment limitations as early as possible (p = 0.00). Patients striving for a longer lifetime did not want such discussions (p = 0.05). Having discussed treatment limitations was not associated with increased anxiety, depression, or distress. Limiting treatment was discussed only with one-third of the patients with a prognosis of less than 6 months and rather with elderly patients or patients in a worse medical condition. Attributing an important role to family decisions was associated with striving for lifetime (p = 0.01). CONCLUSION: Preferences for either quality or length of life were associated with patients' willingness to discuss forgoing cancer-specific treatment. Timely discussion of realistic treatment goals is one way to avoid overtreatment. Patients striving for lifetime require increased attention and opportunities to address prognosis and risks of treatment.

High prevalence of moral distress reported by oncologists and oncology nurses in end-of-life decision making.

OBJECTIVE: Decisions to limit life-prolonging treatment (DLT) are often accompanied by psychological and ethical difficulties. The aim of the study is to investigate prevalence and intensity of moral distress (MD) as well as potential causes experienced by oncology physicians and nurses in DLT situations. METHODS: This prospective study at a German university hospital included n = 100 advanced cancer inpatients with DLT. We surveyed their respective physicians and nurses to assess MD in DLT using an adapted distress thermometer and an open-ended question to specify reasons of MD. We also collected data on the decision-making process from the perspective of the clinicians. RESULTS: Physicians report MD in 67% (n = 51) and nurses in 74% (n = 67) of the cases. The MD level in nurses (mean 2.3; SD 2.3) is significantly higher (P = .005) than in physicians (mean 1.5; SD 1.4). Uncertainties concerning ethical aspects in DLT in a patient case are associated with MD in both physicians (P = .024) and nurses (P = .004). Involvement of nurses in DLT is the strongest predictor (P = .000) for MD as indicated by physicians. Nurses experience MD especially, if the patient has a low quality of life (P = .001). CONCLUSIONS: Moral distress is experienced by both oncologists and nurses in DLT. Nurses report higher MD intensity compared with physicians although the ultimate responsibility for DLT lies with the physicians. Support for the challenging decisions may be provided through the implementation of an ethical guideline and enhanced interprofessional communication.

Development and Evaluation of an Ethical Guideline for Decisions to Limit Life-Prolonging Treatment in Advanced Cancer: Protocol for a Monocentric Mixed-Method Interventional Study.

BACKGROUND: Many patients with advanced cancer receive chemotherapy close to death and are referred too late to palliative or hospice care, and therefore die under therapy or in intensive care units. Oncologists still have difficulties in involving patients appropriately in decisions about limiting tumor-specific or life-prolonging treatment. OBJECTIVE: The aim of this Ethics Policy for Advanced Care Planning and Limiting Treatment Study is to develop an ethical guideline for end-of-life decisions and to evaluate the impact of this guideline on clinical practice regarding the following target goals: reduction of decisional conflicts, improvement of documentation transparency and traceability, reduction of distress of the caregiver team, and better knowledge and consideration of patients' preferences. METHODS: This is a protocol for a pre-post interventional study that analyzes the clinical practice on treatment limitation before and after the guideline implementation. An embedded researcher design with a mixed-method approach encompassing both qualitative and quantitative methods is used. The study consists of three stages: (1) the preinterventional phase, (2) the intervention (development and implementation of the guideline), and 3) the postinterventional phase (evaluation of the guideline's impact on clinical practice). We evaluate the process of decision-making related to limiting treatment from different perspectives of oncologists, nurses, and patients; comparing them to each other will allow us to develop the guideline based on the interests of all parties. RESULTS: The first preintervention data of the project have already been published, which detailed a qualitative study with oncologists and oncology nurses (n=29), where different approaches to initiation of end-of-life discussions were ethically weighted. A framework for oncologists was elaborated, and the study favored an anticipatory approach of preparing patients for forgoing therapy throughout the course of disease. Another preimplementational study of current decision-making practice (n=567 patients documented) demonstrated that decisions to limit treatment preceded the death of many cancer patients (62/76, 82% of deceased patients). However, such decisions were usually made in the last week of life, which was relatively late. CONCLUSIONS: The intervention will be evaluated with respect to the following endpoints: better knowledge and consideration of patients' treatment wishes; reduction of decisional conflicts; improvement of documentation transparency and traceability; and reduction of the psychological and moral distress of a caregiver team. REGISTERED REPORT IDENTIFIER: RR1-10.2196/9698.

"Rather one more chemo than one less ": Oncologists and Oncology Nurses' Reasons for Aggressive Treatment of Young Adults with Advanced Cancer.

BACKGROUND: Empirical research demonstrates that there is a tendency to administer tumor-directed therapy to patients with advanced cancer close to death, especially if they are young. The aim of this qualitative study was to understand oncologists' treatment decisions and oncology nurses' perception of these decisions in young adult patients and to investigate the extent to which young age was a factor in cancer treatment decisions. MATERIALS AND METHODS: We conducted 29 face-to-face interviews with oncologists and oncology nurses at the Department of Hematology and Oncology at the University Hospital in Munich, Germany. The interviews were analyzed according to the grounded theory approach. RESULTS: Oncologists and nurses reported that decisions about limiting cancer treatment with young adult patients are the most challenging and stressful in clinical practice. Apart from using young age as a proxy for patient's medical fitness, oncologists' decisions in favor of more aggressive treatment of younger patients were mainly guided by ethical reasons such as patient preferences and the perceptions of injustice associated with dying at a young age, as well as by psychological reasons, such as identification and emotional entanglement. CONCLUSION: "Struggling" together with the patient against the injustice of dying young for a longer lifetime is an important factor driving aggressive treatment in young adult patients. However, oncologists might run a risk of neglecting other ethical aspects, such as a principle of nonmaleficence, that might even result in life-shortening adverse events. IMPLICATIONS FOR PRACTICE: This study identifies two ethical and one psychological reasons for patients' overtreatment: 1) patients' preference for further treatment; 2) oncologists' perception of un-fairness of dying young; and 3) identification and emotional entanglement with patient. These findings emphasize the need for oncologists' awareness of the reasons guiding their treatment decisions - a sole focus on patients' preferences and on the fighting against the unfairness of dying young might lead to neglecting obligations of non-maleficence. Self-reflection, the balance of empathy and professional distance as well as timely end of life discussions and involvement of psycho-oncologists are needed in the care of young cancer patients.

[Frequency and Timing of Decisions to Limit Intensive Medical Care and Tumor-Specific Therapy in University Hematology and Oncology]. / Häufigkeit und Zeitpunkt von Entscheidungen gegen intensivmedizinische Maßnahmen und tumorspezifische Therapien in einer universitären Hämatologie und Onkologie.

Background Decisions to limit treatment (DLT) are important in order to prevent overtreatment at the end of life. However, they are not always discussed with the patient in advance or sufficiently documented. In a study to improve DLT in patients with an advanced hematological/ oncological disease we examined how often DLT precede deaths and how early they are determined. Methods In a period of 6 months, 567 patients with advanced hematological/ oncological neoplasias had been recruited for the cross-sectional study at the University hospital in Munich. Using a standardized registration form an embedded researcher documented which DLT were determined for the patients and which of them were implemented until death. Results For 26 % (n = 147) of the 567 patients a DLT was determined. These DLT were mostly documented in writing from the beginning on (90 %; n = 132), 20 % (n = 30) were modified. The proportion of deceased patients with DLT was 82 % (n = 62 of 76 deceased). The median time between the initial determination of a DLT and the patient's death was 6 days at normal ward and 10.5 days at palliative ward. Compared to hematological patients, DLT were more frequently diagnosed in patients with an oncological disease (64 vs. 36 %) and the decisions were made slightly earlier (7 vs. 5 days before death). Conclusion Our results show that DLT precede the death of many patients with a hematological/ oncological disease, but usually are made in the last week of life. This leads to the risk that the remaining few days to death are not sufficient for discussions with all parties involved and the planning of the end of life. These findings resulted in the development of an ethics policy for treatment limitation in cancer patients, which should support the concept of advance care planning. The project is funded by the German Cancer Aid.

Physical and psychosocial aspects of adolescent and young adults after allogeneic hematopoietic stem-cell transplantation: results from a prospective multicenter trial.

PURPOSE: Allogeneic hematopoietic stem-cell transplantation (alloHSCT) is physically and psychosocially demanding. Among transplant recipients, adolescent and young adults (AYA) represent a special group, as disease occurs early in life, resulting in the prospect of long survival time and high burden of alloHSCT sequelae. However, data focusing on AYA undergoing alloHSCT are rare. METHODS: Data resulting from a prospective multicenter trial initially focusing on graft-versus-host disease (GvHD) after alloHSCT were reused to analyse the differences between AYA and elderly patients. In total, data of 205 alloHSCT recipients were evaluated. Patients completed the FACT-BMT, HAP, SF-36, 24-AM, LOT-R, BSSS, HADS, and GvHD questionnaires. RESULTS: Median age of AYA and non-AYA patients was 29 and 52 years. Using 24-AM-Test, evaluating personality traits, non-AYA reported to be more conscientious (p = 0.033). However, AYA described higher quality of life regarding physical role functioning (p = 0.001), physical functioning (p = 0.002), bodily pain (p = 0.023), and emotional role function (p = 0.027) in the SF-36. General health perception, vitality, social role functioning, and mental health were comparable among both groups. On HAP scale, AYA reported higher maximum (p = 0.003) and adjusted activity scores (p = 0.002), but showed similar restrictions regarding activity, self-supply, and self-determination. CONCLUSION: AYA represent a particular group characterized by higher physical well-being and activity scores, and significantly vary from non-AYA patients in psychosocial aspects. Studies covering distinctive features of AYA undergoing alloHSCT are warranted to improve awareness of the special needs of this group.

[Advance Care Planning and Decisions to limit treatment at the end of life - the view from medical ethics and psychooncology]. / Vorausschauende Behandlungsplanung und Therapiebegrenzung.

Decisions to limit treatment are important in order to avoid overtreatment at the end of life. They proceed more than half of expected deaths in Europe and the US, but are not always communicated with the patient in advance. One reason for non-involvement is that conversations that prepare patients for end-of-life decisions and work out their preferences do not take place on a regular basis. At the same time there is growing evidence that such communication improves patients' quality of life, reduces anxiety and depression and allows patients to develop a realistic understanding of their situation - which in turn is a prerequisite for shared decision making about limiting treatment. In this paper we define "treatment limitation" and explain the medical ethics perspective. The main focus, however, is on the causes that hinder advanced care planning and conversations about limiting treatment in the care of patients with advanced disease. Finally the evidence for approaches to improve the situation is presented with concrete suggestions for solutions.

ComOn Coaching: Study protocol of a randomized controlled trial to assess the effect of a varied number of coaching sessions on transfer into clinical practice following communication skills training.

BACKGROUND: Communication skills training has proven to be an effective means to enhance communication of health care professionals in oncology. These effects are well studied in standardized settings. The question of transferring these skills into clinical consultations remains open. We build up on a previous developed training concept consisting of a workshop and coaching. This training achieved a medium effect size in two studies with standardized patients. In the current study, we expanded and manualized the coaching concept, and we will evaluate effects of a varied number of coaching sessions on real clinical consultations. Our aim is to determine how much coaching oncologists need to transfer communication skills into clinical practice. METHODS/DESIGN: Physicians of two German medical centers will participate in a workshop for communication skills and will be randomized to either a group with one coaching session or a group with four coaching sessions following the workshop. The participation is voluntary and the physicians will receive medical education points. Consultations held by the participating physicians with actual patients who gave their informed consent will be filmed at three time points. These consultations will be evaluated by blinded raters using a checklist based on the training content (primary outcome). Secondary outcomes will be the self-evaluated communication competence by physicians and an evaluation of the consultations by both physicians and patients. DISCUSSION: We will evaluate our communication training concept on three levels - rater, physician and patient - and concentrate on the transfer of communication skills into real life situations. As we emphasize the external validity in this study design, limitations will be expected due to heterogeneity of data. With this study we aim to gain data on how to improve communication skills training that will result in better patient outcomes. TRIAL REGISTRATION: German Clinical Trials Register DRKS00004385 .

Use of cancer-specific mental health resources-is there an urban-rural divide?

PURPOSE: The purpose of this study is to establish whether mental health (MH) outcomes, attitudes towards cancer-specific MH (CSMH) resources, and the availability of such resources differ between rural and urban cancer patients. METHODS: Three months after surgery for colorectal cancer, patients received a questionnaire for completion at home assessing distress, depression, anxiety, acceptance, knowledge and use of CSMH resources and the doctor-patient relationship. We adjusted our sample to reference data of the Munich Cancer Registry and documented CSMH resources (e.g. cancer-specific information centres and cancer support groups) using a systematic Internet search. RESULTS: Five hundred thirty-four patients participated with a mean age of 68.9 years; 44.5 % were female. Urban patients talked less with their doctor about their emotional state (65 %, p < 0.01) and showed poorer knowledge of CSMH resources (60 %, p < 0.002). A good doctor-patient relationship was associated with a better MH outcome. A significant predictor for acceptance was distress. Ninety-four percent of patients without a nearby support facility lived in rural areas (p < 0.001). There were no group differences concerning distress, MH outcomes, or acceptance of CSMH resources. CONCLUSION: Despite a higher availability of CSMH resources, urban patients showed poorer doctor-patient relationships and less knowledge of such resources than rural patients. Overall, knowledge and use of these resources were poor. The amount of support facilities available therefore appears to be less important than establishing an efficient communication network between patients, doctors and providers of CSMH resources to achieve satisfaction with treatment of urban and rural cancer patients.

Cancer patients' preferences for quantity or quality of life: German translation and validation of the quality and quantity questionnaire.

BACKGROUND: Decision-making with patients with incurable cancer often requires trade-offs between quality and length of life. The 'Quality and Quantity Questionnaire' (QQ) is an English-language measure of patients' preference for length or quality of life. The aim of this study was to translate and validate this questionnaire. MATERIALS AND METHODS: 1 new item was formulated to improve the 'Quality of life' scale. Construct validity including exploratory factor analysis, convergent and discriminant validity, and reliability was determined in n = 194 patients. RESULTS: The acceptability of the questionnaire among patients was high. The item-non-response rate was very low (2.5-4%). The 2 QQ scales 'Quality of life' (QL) and 'Length of life' (LL) had good and acceptable internal consistency (Cronbach's = 0.71 for LL and 0.59 for QL). Convergent validity was shown by significant correlation of the QL subscale with the CCAT (Cancer Communication Assessment Tool) subscale 'Limitation of treatment' (r = 0.37, p < 0.01) and the LL scale with the CCAT subscale 'Continuing treatment' (r = 0.24, p = 0.00). CONCLUSION: The German version of 'QQ' has satisfactory psychometric properties for measuring patients' preferences for LL or QL. It can be used in all research fields that should be informed by patients' preferences: shared decision-making, palliative care, and health services.