Cancer patients' expectations of advance care planning: A typological content analysis of qualitative interviews.

BACKGROUND: Advance care planning (ACP) can help to elicit cancer patients' preferences in a discussion process to promote person-centred medical decision-making. Expectations are known to be highly relevant determinants of decisional processes. So far, however, little is known about cancer patients' expectations of ACP that lead to acceptance or refusal of the programme. The presented study, therefore, aims to explore cancer patients' expectations of ACP. METHODS: Semi-structured interviews were conducted with a purposeful sample of 27 cancer patients consenting to or refusing a newly implemented ACP programme in a German university hospital. Data were analysed using typological content analysis. RESULTS: We identified five different expectation clusters in relation to ACP. Consenting participants held expectations about the impact of ACP that were either 'ego-centred' or 'family-centred'. Refusers had expectations based on ignorance and misinformation, or-if they had already completed an advance directive-expectations to avoid unpleasant redundancy, perceiving no additional benefit but a burden from ACP. Finally, refusers in particular expressed expectations of delegated responsibility at the end of life, including anticipation of proxy decision-making. CONCLUSION: Our study results suggest that expectation-modifying measures could be taken to positively influence cancer patients' expectations and thus the acceptance of ACP. In this respect, reducing ignorance and misguided expectations plays a decisive role. Especially in family constellations with expected delegation of responsibility and dependence at the end of life, it might be important to promote ACP as a family-intervention to improve family outcomes.

Do parents get what they want during bad news delivery in NICU?

OBJECTIVES: Little is known about parents' preferences in breaking bad news (BBN) in neonatology. The study was aimed at comparing parents' experiences with their first BBN discussion with a neonatologist/pediatric surgeon to their personal preferences. METHODS: We conducted a quantitative survey amongst 54 parents of hospitalized preterm or term infants with severe diseases in two medium-size and one small German neonatal units. Parents answered self-rated questions on how they perceived BBN during their infant's hospital stay, asking for procedure and perception of BBN, their preferences and satisfaction with BBN. RESULTS: Overall satisfaction with BBN was moderate to high (median (min-max): 8 (1-10) on a 1-10-Likert scale). A compassionate way of disclosure correlated highest with overall satisfaction with BBN. Thorough transmission of information in an easy to understand manner emerged as another crucial point and correlated significantly to satisfaction with BBN, too. The study revealed that it was highly important for parents, that physicians had good knowledge of the infant and the course of his/her disease, which was only met in a minority of cases. Moreover, there was a major discrepancy between expected and observed professional competence of the delivering physicians. Additionally, physicians did not set aside sufficient time for BBN and parents reported a lack of transporting assurance and hope. CONCLUSIONS: In BBN physicians should draw greatest attention to ensure understanding in parents, with good knowledge of child and disease and sufficient time in a trustworthy manner. Physicians should focus on transporting competence, trust and gentleness.

Prolonged Grief in Times of Lockdown During the COVID-19 Pandemic.

This study aimed to estimate the prevalence of prolonged grief (PG) during the COVID-19 pandemic and to analyze associated variables. 142 family members of patients who died during the lockdown at a hospital were surveyed 6 months after the death. Prolonged grief, depression and anxiety, grief rumination, and loss-related variables were captured. Logistic regression analyses were conducted to detect the associated variables of PG symptoms. Prolonged grief was present in 44.4% of the bereaved. 76.2% of the relatives reported feeling distressed due to visitor restrictions, and the majority of them were unable to bid farewell to their family member at the time of death. Pastoral or psychological care was also lacking. Low education (p < 0.001), emotional closeness (p = 0.007), loss of a spouse (p < 0.001), inability to bid farewell after death (p = 0.024), feeling of threat due to the pandemic (p < 0.001), depression (p = 0.014), and anxiety (p = 0.028) were significantly associated with prolonged grief.

Death anxiety as general factor to fear of cancer recurrence.

OBJECTIVE: Fear of cancer recurrence or progress is strongly related to death anxiety (DA) in cancer patients, but due to lack of conceptualization and measurement methods, the relationship was not analyzed quantitatively before. The aim of the present study was to investigate the conceptual relationship of both constructs, with DA expected to be the general construct. METHODS: Cancer patients (N = 121) participated in an online study. They provided information on socio-demographical, medical and psychological measures including DA and fear of cancer recurrence or progression (FoP-Q-SF). Relation of constructs was assessed using a two-step process: Confirming individual construct structure with confirmatory factor analysis, including correlation of constructs and modification of measurement model, followed by structural equation modeling and comparison of structure models for best model fit. RESULTS: The measurement model was modified to include three residual correlations within and between constructs. Comparison of structure models supported a bifactor structure with DA as general factor and fear of recurrence or progression as group factor: SBχ2 (173) = 207.74 (p < 0.05), SB = 1.538, relative χ2  = 1.2, rRMSEA = 0.05 [0.01, 0.07] (p > 0.05), SRMR = 0.07, CFI = 0.94, AIC = 7543.60. CONCLUSIONS: DA can be interpreted as general factor to fear of cancer recurrence or progression. Psychological interventions to reduce emotional burden of cancer patients need to focus additionally on existential threat and individual fears regarding DA.

Developing a care pathway for hospital-based advance care planning for cancer patients: A modified Delphi study.

OBJECTIVES: The objective of this study is to develop a care pathway for a hospital-based advance care planning service for cancer patients. METHODS: A web-based modified Delphi study consulted an expert panel consisting of a convenience sample of stakeholders including professionals with a special interest in advance care planning as well as a 'public and patient involvement group'. After generating ideas for core elements of a care pathway in the first round, numerical ratings and rankings informed the multi-professional research steering group's decision process eventually resulting in a final pathway. RESULTS: The 41 participants in the Delphi study identified 177 potential core elements of the pathway in the first round. In two further rounds, consensus was reached on a final version of the pathway with 148 elements covering the 10 domains: prerequisites, organisation and coordination, identification and referral, provision of information, information sources, family involvement, advance care planning discussion, documentation, update and quality assurance. CONCLUSION: We propose a care pathway for advance care planning for hospital patients with cancer based on the results of a Delphi study that reached consensus on an implementation strategy. Our study pioneers the standardisation of the process and provides input for further policy and research with the aim of aligning cancer patients' care with their preferences and values.

Expectations in the Communication About Death and Dying: Development and Initial Validation of the End-of-Life Conversations - Expectations Scale.

End-of-life (EOL) conversations with relatives or significant others are often avoided. One reason can be negative expectations regarding these conversations. The present study was conducted to develop and initially validate the End-of-Life Conversations - Expectations Scale (EOLC-E). An exploratory factor analysis (N = 307) resulted in a 20-item version with three distinct dimensions: expected own emotional burden (α = .92), expected other person's emotional burden (α = .94) and communication self-efficacy (α = .89). The EOLC-E total score correlated significantly with communication apprehension about death (r = .62), fear of death (r = .58), death avoidance (r = .52) as well as readiness for end-of-life conversations (r = -.38) and occurrence of previous conversations (r = -.29). Results suggest that the EOLC-E is a reliable and valid instrument to assess death and dying communication expectations. This measure has utility in communication research focusing on optimizing expectations and increasing EOL communication.

Matters of Life and Death: An Experimental Study Investigating Psychological Interventions to Encourage the Readiness for End-of-Life Conversations.

INTRODUCTION: Talking about death and dying is evoking discomfort in many persons, resulting in avoidance of this topic. However, end-of-life discussions can alleviate distress and uncertainties in both old and young adults, but only a minority uses this option in palliative care. Even in healthy populations, talking about death is often seen as alleviative and worthwhile, but rarely initiated. OBJECTIVE: To investigate different psychological interventions (a) encouraging the readiness for end-of-life discussions and (b) changing death attitudes in healthy adults of different ages. METHODS: 168 participants were randomized to four different interventions (IG1: value-based intervention with end-of-life perspective, IG2: motivation-based intervention with end-of-life perspective, IG3: combination of IG1 and IG2, CG: control group). Primary outcome was the readiness to engage in end-of-life topics. Secondary outcomes were fear of death, fear of dying and death acceptance. Assessments took place before, directly after the intervention and at 2 weeks of follow up. RESULTS: IG2 and IG3 reported significantly more changes in the readiness to engage in end-of-life discussions than the CG (F[5.61, 307] = 4.83, p < 0.001, ηp2 = 0.081) directly after the intervention. The effect of IG3 remained stable at the follow-up. There were no significant effects of the interventions on end-of-life fears or death acceptance. Acceptability of the interventions was very high. CONCLUSIONS: Short interventions can be useful to encourage end-of-life discussions and could be integrated in health care programs. The efficacy and effectiveness of these short interventions in palliative patients are currently examined.

'It was like taking an inner bath': A qualitative evaluation of a collaborative advance care planning-approach.

BACKGROUND: Impaired readiness may hinder purposeful advance care planning in cancer patients. To reduce barriers to participation in end-of-life decision-making, a collaborative intervention was developed combining a psycho-oncological approach of dignity-based and cognitive-behavioural interventions, followed by a standardised advance care planning-process. AIM: To evaluate the novel collaborative advance care planning-approach by synthetising cancer patient and carer perspectives on communicational and relational effects. DESIGN: As a sub-project of a mixed-methods evaluation study, we conducted an inductive content analysis of qualitative interviews with advanced cancer patients and caregivers to deeply explore the focused impact of a collaborative advance care planning-approach on communication and relationship dynamics. SETTING/PARTICIPANTS: Twelve patients with advanced cancer and 13 carers who participated in a collaborative advance care planning-intervention. RESULTS: The collaborative advance care planning-approach was consistently evaluated positively by participants. Transcriptions of the semi-structured interviews were coded, analysed and merged under three main themes concerning communicational and relationship dynamics: action readiness, content readiness and impact on future communication and relationship. CONCLUSIONS: The novel intervention served to foster individual readiness - including action and content readiness - for advance care planning-discussions by addressing highly individualised barriers to participation, as well as specific end-of-life issues. In addition, societal readiness could be promoted. Although the brief psycho-oncological intervention could not fully meet the needs of all participants, it can be used to develop individual psychotherapeutic strategies to improve different facets of readiness. The collaborative advance care planning-approach might require more time and human resources, but could pioneer successful advance care planning.

["We are Heading Towards that Now" - A Qualitative Analysis of the Perspectives of Healthy Older Adults on Conditions, Difficulties and Benefits of Early End-of-Life Conversations]. / "Wir sind jetzt auch auf dem Weg dahin" ­ Qualitative Untersuchung zu den Perspektiven älterer gesunder Erwachsener über Voraussetzungen, Schwierigkeiten und Nutzen von Gesprächen über das Lebensende.

OBJECTIVE: Early conversations about the end of life can contribute to patient-centered care at the end of life. Too often, however, these conversations do not take place or if they do, they are too late. The aim of this qualitative research was to identify the prerequisites, difficulties and usefulness of such conversations from the point of view of healthy older adults. The findings might be of use in primary health care to provide early and open end-of-life discussions. METHODS: The interviews stem from an experimental study concerning the readiness of end-of-life conversations with healthy adults. Six transcripts (2 male and 4 female participants, 65-78 years) were evaluated by using the thematic analysis by Braun and Clarke. RESULTS: Conditions for the initiation of conversations were thematically separated into beliefs and attitudes, intrinsic motivation, experience, family communication and practical realization. Difficulties were found in the areas of cognitive barriers, practical realization, emotional barriers, relational factors and environmental conditions. Participants saw the usefulness of such conversations in the areas of relationship quality, organizational profit, values, as well as cognitive and emotional areas. DISCUSSION: The results are in agreement with past research. From the perspective of older healthy people, family conversations about the end of life can be "too late". However, it also appears that there are specific barriers to early discussions. The findings on helpful conditions and barriers can be used for the development of interventions to increase readiness for such discussions. CONCLUSION: Early conversations about the end of life should be offered in the sense of preventive care in a low-threshold way. Providers of primary health care can identify a "need to talk", reduce communication barriers and encourage confrontation with one's own mortality. Adequate information should be provided if necessary, and a structured communication approach should be employed.

Collaborative advance care planning in advanced cancer patients: col-ACP -study - study protocol of a randomised controlled trial.

BACKGROUND: To assure patient-centred end-of-life care, palliative interventions need to account for patients' preferences. Advance care planning (ACP) is a structured approach that allows patients, relatives and physicians to discuss end-of-life decisions. Although ACP can improve several patient related outcomes, the implementation of ACP remains difficult. The col-ACP-study (collaborative advance care planning) will investigate a new ACP procedure (col-ACP-intervention (German: Hand-in-Hand Intervention)) in palliative cancer patients and their relatives that addresses individual values and targets barriers of communication before an ACP process. METHODS: In a randomised controlled trial, 270 cancer patients without curative treatment options and their relatives will receive either 1) col-ACP 2) a supportive intervention (active control group) or 3) standard medical care (TAU). col-ACP comprises two steps: a) addressing various barriers of patients and relatives that discourage them from discussing end-of-life issues followed by b) a regular, structured ACP procedure. The col-ACP-intervention consists of 6 sessions. Primary endpoint is the patients' quality of life 16 weeks after randomisation. Secondary endpoints include measurements of distress; depression; communication barriers; caregivers' quality of life; existence of ACP or advance directives; the consistence of end of life care; and others. Patients will be followed up for 13 months. Multivariate analyses will be carried out. Qualitative evaluation of the intervention will be conducted. DISCUSSION: Augmentation of a regular ACP program by a structured psycho-oncological intervention is an innovative approach to target barriers of communication about end-of-life issues. Study findings will help to understand the value of such a combined intervention in palliative care. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03387436 (Date of registration: 01/02/2018, retrospectively registered.

[Barriers to Conversations About Death and Dying in the Medicine]. / Barrieren für Gespräche über Tod und Sterben in der Medizin.

Conversations about death, dying and the end of life are usually difficult. They can turn out to be both a burden and a challenge for those engaging in these talks. There is evidence that talking early about end-of-life-topics shows positive effects concerning medical and psychological conditions of patients. Open communication addressing these topics can be part of family- and patient-centered talks in an intensive care department, known as a quality indicator of intensive care medicine. Further, these conversations are important and necessary in palliative care for providing a "good death". Nevertheless, these conversations are delayed or do not take place due to communication barriers of doctors, patients and caregivers. Barriers to end of life communication of physicians contain individual, personal or role-specific factors, lack of medical knowledge, including insecurities of prognosis, professional attitudes, clinical routines and the worry of harming patients with these talks. Regarding barriers to communication of patients and their family members, it could be differentiated between emotional, cognitive, relationship-related and external factors. It could be valuable to recognize these barriers to increase the possibility of end of life conversations in the near future.In daily medical routine end of life topics should be addressed early and actively. Especially the readiness for these conversations should be tested repeatedly and talks should be offered regularly. Critical events such as relapse, modulating therapy concepts and knowledge of unrealistic treatment expectations should be regarded as prompts to offer conversations about dying and end-of-life care actively.

Cancer patient utilisation of psychological care in Germany: The role of attitudes towards seeking help.

OBJECTIVE: Even if significantly distressed, many patients with cancer do not seek psychological help. There is growing evidence that attitudes are central barriers for help-seeking, and instruments to assess cancer patients' attitudes towards help-seeking are urgently needed. This study aimed to evaluate the German Attitudes towards Seeking Help after Cancer Scale (ASHCa-G) and investigated the relationship between patients' attitudes and psychological care utilisation. METHODS: The ASHCa-G was presented to 270 patients with cancer (age 63.0 ± 12.7 years, 44.8% women). Item analyses, principal component analysis and associations with age, social support, help-seeking intention and psychological care utilisation were calculated. A hierarchical logistic regression was performed to ascertain the leading role of attitudes in explaining psychological care utilisation. RESULTS: Principal component analysis supported a two-component solution, which showed good internal consistency for the positive attitudes (α = 0.80) and negative attitudes (α = 0.75) subscales. The associations with age, distress and help-seeking intention confirmed the validity of the ASHCa-G. Positive attitudes explained most variance of cancer patients' current psychological care utilisation. CONCLUSION: The ASHCa-G seems to be a reliable and valid questionnaire for assessing attitudes towards seeking psychological help among patients with cancer. Clinical practice might profit from identifying attitudinal barriers that hinder patients with cancer from seeking psychological help.

Facilitating adherence to endocrine therapy in breast cancer: stability and predictive power of treatment expectations in a 2-year prospective study.

PURPOSE: To identify modifiable factors predictive of long-term adherence to adjuvant endocrine therapy (AET). METHODS: As part of a 2-year cohort study in primary care (n = 116), we investigated whether initial treatment expectations predict adherence at 24 months after controlling for demographic, medical, and psychosocial variables. Treatment expectations were measured as necessity-concern beliefs, expected side-effect severity, and expected coping with side effects. Their stability over time and differences of trajectories between the adherent and nonadherent group were examined. RESULTS: Nonadherence at 24 months was 14.7% (n = 17). Side-effect severity at 3 months [OR 0.25, 95% CI (0.08, 0.81), p = 0.02] and necessity-concern beliefs [OR 2.03, 95% CI (1.11, 3.72), p = 0.02] were the sole predictors of adherence. Necessity-concern beliefs remained stable over 2 years, whereas expected side-effect severity (p = 0.01, η p2  = 0.07) and expected coping with side effects became less optimistic over time (p < 0.001, η p2  = 0.19), the latter particularly among nonadherers (p < 0.01, η p2  = 0.10). CONCLUSIONS: Patients' initial necessity-concern beliefs about the AET and early severity of side effects affect long-term adherence. Expecting poor management of side effects may also facilitate nonadherence. We suggest that discussing benefits, addressing concerns of AET, and providing side-effect coping strategies could constitute a feasible and promising option to improve adherence in clinical practice.

What do women with breast cancer expect from their treatment? Correlates of negative treatment expectations about endocrine therapy.

OBJECTIVES: Patients' negative treatment expectations can lead to nocebo-related side effects and non-initiation of treatment. This study aims to identify correlates of treatment expectations in patients with breast cancer before the start of endocrine therapy. METHODS: Expectations were assessed in a cross-sectional sample of 166 patients with breast cancer after receiving treatment information. Side effect expectations (one item) and treatment necessity-concern balance (Beliefs about Medicines Questionnaire) were assessed. Correlates were analyzed using regression analyses. The structure of treatment expectations was investigated using a network analysis. RESULTS: About 25% of patients expressed negative expectations. Higher side effect expectations were associated with lower treatment efficacy expectations (ß = -0.20, p = 0.01), higher medication overuse beliefs (ß = 0.17, p = 0.01), and a negative treatment appraisal before study treatment information (ß = -0.17, p = 0.02). A negative necessity-concern balance was associated with lower treatment efficacy expectations (ß = 0.36, p < 0.001), lower adherence intention (ß = 0.21, p < 0.001), and no knowledge of tumor's receptor status (ß = 0.21, p < 0.001); furthermore, it was associated with higher medication harmfulness beliefs (ß = -0.16, p = 0.02), negative treatment pre-appraisal (ß = 0.15, p = 0.01), higher somatosensory amplification (ß = -0.14, p = 0.02), and higher education (ß = -0.12, p = 0.02). The most important network node was the concern that endocrine therapy disrupts life. CONCLUSION: Negative treatment expectations before treatment start are mainly associated with psychological variables. These results are relevant for patient education in clinical settings. To improve expectations, clinicians might emphasize treatment efficacy and discuss general and specific medication concerns. Improving treatment knowledge could also be beneficial. Copyright © 2016 John Wiley & Sons, Ltd.

Informing women with breast cancer about endocrine therapy: effects on knowledge and adherence.

OBJECTIVE: Adherence to adjuvant endocrine therapy in women with breast cancer is low, and patients are not informed sufficiently. This study analyzes the effects of a structured treatment information on patients' satisfaction, knowledge, and adherence. METHODS: An interventional single cohort study of postoperative women with estrogen-receptor-positive breast cancer was conducted to study the effects of enhanced information about endocrine therapy given additionally to clinical routine information. Knowledge and satisfaction with additional information given 1-3 weeks after surgery were assessed before and after informing patients; adherence and knowledge were measured 3 months after start of treatment. RESULTS: A total of 137 patients were analyzed before and after provision of enhanced treatment information as well as 3 months after start of endocrine therapy. Enhanced information increased satisfaction with information and knowledge. The percentage of patients who knew their estrogen receptor status increased from 50% to 93%. At 3 months follow-up, 60% still had correct knowledge. Patients who learned their receptor status were older, and those who forgot had lower cognitive abilities and lower educational level. Patients with higher satisfaction, better learning, and comprehension directly after enhanced information showed better adherence at 3 months follow-up. CONCLUSION: Patients, especially older ones, can benefit from enhanced treatment information given additionally to routine care. Enhanced information about mode of action and potential side effects of endocrine therapy when included into clinical routine might foster patient autonomy and prevent early disruptions in adherence.

Quality of life in cancer rehabilitation: the role of life goal adjustment.

OBJECTIVE: A cancer diagnosis affects patients' quality of life (QOL) as well as their pursuit of life goals. However, numerous studies have shown surprisingly stable QOL measures in cancer patients over time. We propose that life goal adjustment can act as the missing link in explaining this response shift. Thus, the aim of this study was to examine associations between life goal adjustment and patients' QOL at baseline and over the course of 20 months. METHODS: Eighty-six cancer patients were recruited during rehabilitation and reassessed at follow-up 20 months later. Life goals were measured using the Life Goals Questionnaire and analyzed in relation to global QOL as assessed with the World Health Organization Quality of Life Questionnaire - Short Form. RESULTS: The overall attainment of life goals was associated with QOL. Moreover, over a period of 20 months, perceived QOL and goal attainment remained stable, whereas importance of life goals decreased. Lesser importance and improved goal attainment were predictors of increases in QOL. CONCLUSIONS: Results suggest that downgrading unattainable goals and making more progress in accomplishing attainable goals may be possible mechanisms of response shift as an adaption to illness. Thus, integrating life goal adjustment into rehabilitation services for cancer patients seems to be worthwhile to enhance an adaptive self-regulation and QOL.

Questionnaires About the End of Life for Cancer Patients - Is the Response Burden Acceptable?

CONTEXT: Research about the end of life with the help of patient-reported outcomes in vulnerable populations such as cancer patients is needed but is potentially burdensome and can therefore raise concerns. OBJECTIVES: To assess the response burden due to questionnaires about the end of life in cancer patients and to explore associations with individual variables. METHODS: In a cross-sectional design response burden was assessed using a six-item instrument after completion of a survey that concerned the end of life. Associations with age, gender, type of care (curative/palliative), years since diagnosis, distress, depression, anxiety, death anxiety, readiness for end-of-life conversations, and readiness for advance care planning were explored via correlational analyses and multiple regressions. Burden due to the topic of end-of-life and completing questionnaires in general was compared. RESULTS: A total of 269 cancer patients (mean age 61.4 (SD =12.3); 59.5% male; 58.4% in palliative care) completed the survey in a German hospital. The majority did not report response burden; 29.7% reported at least some burden due to study participation. The multiple regression (F [10,26] = 9.97, p < 0.001) indicated that stable predictors of response burden were higher death anxiety (ß = 0.4), lower readiness to talk about one's end of life (ß = -0.34) and higher age (ß = 0.23). No additional subjective burden due to the topic of end-of-life was reported. CONCLUSION: The reported response burden seems acceptable since it was generally low. However, a subgroup did report some burden. Minimising burden and enhancing participants' benefits without compromising the research quality should further influence study designs in this field.

Difficulties of Cancer Patients' Relatives in End-of-Life Discussions: Validation of a Questionnaire.

CONTEXT: Despite the potential benefits and the desire for end-of-life communication, it rarely occurs in the familial context. Relatives play a significant role in the communication process; thus, it is crucial to understand the difficulties that they face. OBJECTIVES: To develop and evaluate the relatives' version of the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI-r) regarding its factor structure, reliability and validity. METHODS: Relatives of patients with advanced cancer were recruited in a German hospital. The factor structure of the questionnaire was explored. Construct validity was examined through correlations between the DEOLD-FI-r and measures of avoidance of cancer communication, quality of life, distress, and experienced difficulty during end-of-life discussions. Additionally, we examined the group difference between those who had and had not engaged in the conversation. RESULTS: About 111 relatives completed the survey (mean age 55.5 years, 52% female). The final version of the DEOLD-FI-r contained 23 items (α = .92). The exploratory factor analysis resulted in three factors explaining 74% of the variance. Each factor described another dimension of potential communication barriers in end-of-life discussions: 1) Own emotional burden, 2) Relational and patient-related difficulties, 3) Negative attitudes. Construct validity was supported by correlations consistent with our hypotheses and less reported communication difficulty by those who had already talked about the end-of-life with their relative (t(106) = 5.38, P < .001, d = 0.8). CONCLUSION: The results indicate that the DEOLD-FI-r is a valid and reliable instrument for the systematic assessment of difficulties in family end-of-life communication. By focusing on relatives, it complements the already validated patient-version.

Collaborative advance care planning in palliative care: a randomised controlled trial.

OBJECTIVE: An effective tool for establishing concordant end-of-life (EOL) care in patients with cancer is advance care planning (ACP). However, various barriers, including psychological obstacles, hamper the access to ACP. Therefore, a new conceptual model combining a psycho-oncological approach with structured ACP was developed. The effectiveness and efficiency of this new concept of collaborative ACP (col-ACP) is evaluated in the present randomised controlled trial in patients with palliative cancer. METHODS: 277 patients with palliative cancer and their relatives were randomised into three groups (1) collaborative ACP (col-ACP) consisting of a psycho-oncological approach addressing barriers to EOL conversations followed by a standardised ACP procedure, (2) supportive intervention (active control) and (3) standard medical care. RESULTS: Patients in the col-ACP group completed advance directives (p<0.01) and healthcare proxies (p<0.01) significantly more often. Additionally, they felt better planned ahead for their future treatment (p<0.01) and were significantly more confident that their relatives were aware of their treatment wishes (p=0.03). In fact, their goals of care were known and highly fulfilled. However, patients' and caregivers' quality of life, patients' stress, depression and peace did not differ between the groups. CONCLUSIONS: The new, well-received, concept of col-ACP improves readiness and access to ACP and results in more consistent EOL care. Further, even if no direct influence on quality of life could be proven, it supports patients in planning their treatment, making autonomous decisions and regaining self-efficacy in the face of life-limiting cancer. Therefore, a closer interlocking and information exchange between psycho-oncological and ACP services seems to be reasonable. TRIAL REGISTRATION NUMBER: NCT03387436.

Optimizing expectations to prevent side effects and enhance quality of life in breast cancer patients undergoing endocrine therapy: study protocol of a randomized controlled trial.

BACKGROUND: Adjuvant endocrine therapy can improve disease-free survival and time before recurrence in breast cancer patients. However, it is associated with considerable side effects that negatively affect patients' quality of life and cause non-adherence. The recently demonstrated effect of individual expectations on side-effect development (nocebo effect) suggests that psychological factors play a role in the prevention of side effects. The aim of this study is to evaluate cognitive-behavioral side-effect prevention training (SEPT) for breast cancer patients. This article describes the study protocol and applied research methods. METHODS/DESIGN: In a randomized controlled trial, 184 female breast cancer patients are assigned to receive either SEPT, standard medical care or a manualized supportive therapy at the start of adjuvant endocrine treatment. SEPT consists of three sessions of cognitive-behavioral training including psychoeducation to provide a realistic view of endocrine therapy, imagination-training to integrate positive aspects of medication into daily life, and side-effect management to enhance expectations about coping ability. Side effects three months after the start of endocrine therapy serve as primary outcomes. Secondary outcomes include quality of life, coping ability and patients' medication adherence. Patients' expectations (i.e., expectations about side effects, coping ability, treatment and illness) are analyzed as mediators. DISCUSSION: The optimization of expectations might be a potential pathway in health care to improve patients' quality of life during long-term medication intake. The results will provide implications for a possible integration of evidence-based prevention training into clinical practice. TRIAL REGISTRATION: ClinicalTrials.gov, (NCT01741883).