Characteristics of timely integration of palliative care into oncology hospital care for patients with incurable cancer: results of a Delphi Study.

PURPOSE: To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC. METHODS: A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%. RESULTS: A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient's request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3 months should be offered a consultation (71%). CONCLUSION: The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death.

Effects of Prognostic Communication Strategies on Prognostic Perceptions, Treatment Decisions and End-Of-Life Anticipation in Advanced Cancer: An Experimental Study among Analogue Patients.

CONTEXT: Evidence-based guidance for oncologists on how to communicate prognosis is scarce. OBJECTIVES: To investigate the effects of prognostic communication strategies (prognostic disclosure vs. communication of unpredictability vs. non-disclosure; standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on prognostic perceptions, treatment decision-making and end-of-life anticipation in advanced cancer. METHODS: This experimental study used eight videos of a scripted oncological consultation, varying only in prognostic communication strategies. Cancer-naive individuals, who imagined being the depicted patient, completed surveys before and after watching one video (n = 1036). RESULTS: Individuals generally perceived dying within 1 year as more likely after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001), and after numerical versus word-based estimates (P < 0.001). Individuals felt better informed about prognosis to decide about treatment after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001); after communication of unpredictability versus non-disclosure (P < 0.001); and after numerical versus word-based estimates (P = 0.017). Chemotherapy was more often favored after prognostic disclosure versus non-disclosure (P = 0.010), but less often after numerical versus word-based estimates (P < 0.001). Individuals felt more certain about the treatment decision after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001). Effects of different survival scenarios were absent. No effects on end-of-life anticipation were observed. Evidence for moderating individual characteristics was limited. CONCLUSION: If and how oncologists discuss prognosis can influence how individuals perceive prognosis, which treatment they prefer, and how they feel about treatment decisions. Communicating numerical estimates may stimulate prognostic understanding and informed treatment decision-making.

Effects of prognostic communication strategies on emotions, coping, and appreciation of consultations: An experimental study in advanced cancer.

OBJECTIVES: We aimed to investigate effects of prognostic communication strategies on emotions, coping, and appreciation of consultations in advanced cancer. METHODS: For this experimental study, we created 8 videos of a scripted oncological consultation, only varying in prognostic communication strategies. Disease-naive individuals (n = 1036) completed surveys before and after watching 1 video, while imagining being the depicted cancer patient. We investigated effects of the type of disclosure (prognostic disclosure vs. communication of unpredictability vs. non-disclosure) and content of disclosure (standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on emotions, coping, and appreciation of consultations. Moderating effects of individual characteristics were tested. RESULTS: Participants generally reported more satisfaction (p < .001) after prognostic disclosure versus communication of unpredictability and less uncertainty (p = .042), more satisfaction (p = .005), and more desirability (p = .016) regarding prognostic information after numerical versus word-based estimates. Effects of different survival scenarios were absent. Prognostic communication strategies lacked effects on emotions and coping. Significant moderators included prognostic information preference and uncertainty tolerance. SIGNIFICANCE OF RESULTS: In an experimental setting, prognostic disclosure does not cause more negative emotions than non-disclosure and numerical estimates are more strongly appreciated than words. Oncologists' worries about harming patients should not preclude disclosing (precise) prognostic information, yet sensitivity to individual preferences and characteristics remains pivotal.

Open communication between patients and relatives about illness & death in advanced cancer-results of the eQuiPe Study.

OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.

Referrals to Palliative Care Services for Hospitalised COVID-19 Patients: A Systematic Literature Review.

BACKGROUND: The increase in the incidence of the coronavirus disease 2019 (COVID-19) led to more hospital admissions and deaths, and coincided with an increased need for palliative care. The new circumstances required palliative care services to be flexible and to develop response strategies. AIM: To synthesise studies including COVID-19 patients to gain insight into how many patients were referred to hospital-based palliative care services, the characteristics and palliative care needs of these patients and the reasons for referral. DESIGN: A systematic literature search was conducted in January 2022 using the PubMed, Embase, CINAHL, and PsycInfo databases. RESULTS: Twenty-seven studies were identified. The results show that in 16% of all COVID-19 inpatients and 55% of all deceased COVID-19 inpatients were referred to a palliative care service. The median time from hospital admission to referral was 4 days and from referral to death was 2 days. COVID-19 inpatients were frequently referred for end-of-life care management (52%), had ≥1 comorbidities (84%), and suffered from shortness of breath/dyspnea (45%). CONCLUSIONS: The care provided was generally acute, with a high proportion of end-of-life care referrals and a short time period from hospital admission to referral and from referral to death. This highlights the importance of early integration of palliative care into emergency department (ED) care of critically ill patients.

Outcomes and Feasibility of an Occupational Care Programme (TERRA) to Support Work Ability of Rare and Advanced Cancer Patients: A Report of 7 Cases.

INTRODUCTION: Advancements in the field of oncology are allowing patients to live longer, with enhanced quality of life (QoL). Accordingly, more patients with cancer are expressing the desire to return to work (RTW). Previous research has indicated that patients with a rare or advanced cancer can experience unique problems in the RTW process. METHODS: This pilot study evaluated the outcomes and feasibility of the occupational care programme TERRA (i.e., recalibraTe lifE and woRk with and afteR cAncer) for patients with a rare or advanced cancer. Four rare cancer patients and three advanced cancer patients completed TERRA; a supportive occupational care programme consisting of five online group sessions over a two-month period. Pre- and post-intervention outcomes were collected using validated self-report questionnaires. The primary outcome was work ability. Secondary outcomes included QoL, anxiety and depression, fatigue, unmet needs, self-efficacy, readiness for RTW, work intention, work involvement, and work-life conflict. Feasibility was assessed using the RE-AIM model. RESULTS: Changes in work ability scores were inconsistent across participants. Well-being outcomes generally improved following the intervention. Feasibility was evaluated positively by both participants and trainers. DISCUSSION/CONCLUSION: A multidisciplinary approach may further improve outcomes of occupational interventions supporting rare and advanced cancer patients. An effectiveness study to evaluate the outcomes and feasibility of the programme is deemed necessary.

Nursing assistants' perceptions and experiences with the emotional impact of providing palliative care: A qualitative interview study in nursing homes.

AIM: To gain insight into the perceived emotional impact of providing palliative care among nursing assistants in Dutch nursing homes, their strategies in coping with this impact and associated needs. DESIGN: Exploratory qualitative study. METHODS: In 2022, 17 semistructured interviews with nursing assistants working in Dutch nursing homes were conducted. Participants were recruited via personal networks and social media. Interviews were open-coded by three independent researchers following the thematic analysis approach. RESULTS: Three themes emerged regarding the elements that contribute to the emotional impact of providing palliative care in nursing homes: impactful situations (e.g. witnessing suffering and sudden deaths), interactions (e.g. close relationship and receiving gratitude) and reflection on provided care (e.g. feeling fulfilment or feeling inadequate in caring). Nursing assistants used different strategies to cope, including emotional processing activities, their attitude towards death and work and gaining experience. Participants experienced a need for more education in palliative care and organized peer group meetings. CONCLUSION: Elements that play a role in how the emotional impact of providing palliative care is perceived by nursing assistants can have a positive or negative impact. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nursing assistants should be better supported in coping with the emotional impact of providing palliative care. IMPACT: In nursing homes, nursing assistants are most involved in providing daily care to residents and have a signalling role in recognizing the deteriorating conditions of residents. Despite their prominent role, little is known about the emotional impact of providing palliative care among these professionals. This study shows that although nursing assistants already undertake various activities to reduce the emotional impact, employers should be aware of the unmet needs in this area and the responsibility they have in this regard. REPORTING METHOD: The QOREQ checklist was used for reporting. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Clinicians' experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands.

AIM: To explore (1) experiences of primary care physicians (PCPs) and oncological medical specialists about providing care to patients living longer with incurable cancer, and (2) their preferences concerning different care approaches (palliative support, psychological/survivorship care support). BACKGROUND: At present, oncological medical specialists as well as PCPs are exploring how to improve and better tailor care to patients living longer with incurable cancer. Our previous study at the in-patient oncology unit showed that patients living longer with incurable cancer experience problems in how to deal with a prognosis that is insecure and fluctuating. To date, it could be argued that treating these patients can be done with a 'palliative care' or a 'survivorship/psychosocial care' approach. It is unknown what happens in actual medical practice. METHODS: We performed multidisciplinary group meetings: 6 focus groups (3 homogenous groups with PCPs (n = 15) and 3 multidisciplinary groups (n = 17 PCPs and n = 6 medical specialists) across different parts of the Netherlands. Qualitative data were analysed with thematic analysis. FINDINGS AND CONCLUSIONS: In the near future, PCPs will have an increasing number of patients living longer with incurable cancer. However, in a single PCP practice, the experience with incurable cancer patients remains low, partly because patients often prefer to stay in contact with their medical specialist. PCPs as well as medical specialists show concerns in how they can address this disease phase with the right care approach, including the appropriate label (e.g. palliative, chronic, etc.). They all preferred to be in contact early in the disease process, to be able to discuss and take care for the patients' physical and psychological well-being. Medical specialists can have an important role by timely referring their patients to their PCPs. Moreover, the disease label 'chronic' can possibly assist patients to live their life in the best possible way.

Update on Prevalence of Pain in Patients with Cancer 2022: A Systematic Literature Review and Meta-Analysis.

Experiencing pain and insufficient relief can be devastating and negatively affect a patient's quality of life. Developments in oncology such as new treatments and adjusted pain management guidelines may have influenced the prevalence of cancer pain and severity in patients. This review aims to provide an overview of the prevalence and severity of pain in cancer patients in the 2014-2021 literature period. A systematic literature search was performed using the databases PubMed, Embase, CINAHL, and Cochrane. Titles and abstracts were screened, and full texts were evaluated and assessed on methodological quality. A meta-analysis was performed on the pooled prevalence and severity rates. A meta-regression analysis was used to explore differences between treatment groups. We identified 10,637 studies, of which 444 studies were included. The overall prevalence of pain was 44.5%. Moderate to severe pain was experienced by 30.6% of the patients, a lower proportion compared to previous research. Pain experienced by cancer survivors was significantly lower compared to most treatment groups. Our results imply that both the prevalence of pain and pain severity declined in the past decade. Increased attention to the assessment and management of pain might have fostered the decline in the prevalence and severity of pain.

Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type: results of the multicentre observational eQuiPe study.

PURPOSE: Patients with a rare cancer face difficulties during their disease trajectory, such as delayed diagnosis and lack of expert care. However, little is known about their perceived quality of care (QoC) and quality of life (QoL) in the advanced disease stage. We aimed to assess the QoC and QoL as experienced by patients with advanced rare cancers compared to patients with advanced common cancers. METHODS: In this cross-sectional study, baseline data of patients with advanced cancer from the multicentre, longitudinal, observational eQuipe study were analysed. Multivariable linear regression analyses were conducted to assess differences in experienced QoC (continuity of care, continuity of information, and satisfaction with care) and QoL (functioning, symptoms, overall QoL, and social wellbeing) between advanced rare and common cancer patients. RESULTS: Of the 1087 included patients, 106 (9.8%) had a rare cancer type. In comparison to patients with advanced common cancers, patients with advanced rare cancers experienced significantly lower continuity of care (77.8 vs. 71.1 respectively, p = 0.011) and social functioning (78.8 vs. 72.6 respectively, p = 0.012). No differences were found regarding continuity of information, satisfaction with care, overall QoL, and social wellbeing. CONCLUSIONS: Patients with advanced rare cancers experience less continuity of care, and the impact of the disease on social and family life seems higher compared to patients with advanced common cancers. IMPLICATIONS FOR CANCER SURVIVORS: To enhance the QoC and QoL of patients with advanced rare cancers, supportive care should mainly focus on improving continuity of care and patients' social functioning.

Rare cancer and return to work: experiences and needs of patients and (health care) professionals.

PURPOSE: Patients with a rare cancer often face delays in their diagnostic and treatment trajectory, which may affect their work. In this study, we explored experiences and needs of: 1) patients with a rare cancer regarding return to work (RTW) and work retention, and 2) (health care) professionals (HCPs) regarding work-related support of patients with a rare cancer, throughout their disease trajectory. METHODS: Semi-structured, in-depth interviews with working-age patients with a rare cancer (n = 16), and HCPs (n = 9) were conducted. During the interviews, a predefined topic list was used. Interviews were transcribed verbatim and analysed by means of thematic analysis. RESULTS: In total, three themes emerged from the interviews: 1) Awareness in patients and HCPs as a first step towards work, 2) Being/becoming an expert is a tough job, and 3) Enhancing employability through early personalized guidance. CONCLUSIONS: Patients with a rare cancer are confronted with uncertainties regarding work, due to an overall lack of knowledge and experience with these types of cancer. Raising awareness among patients, HCPs and employers about rare cancer and its implications, and providing timely individualized, supportive occupational care are required to improve rare cancer patients' ability to work.Implications for rehabilitationRecognizing and paying attention to the work-related consequences of a rare cancer diagnosis and its treatment is essential to facilitate rare cancer patients' occupational rehabilitation process.Multidisciplinary collaboration and involvement of HCPs specialized in rare cancer are required to provide suitable work-related support.A personalized approach is necessary to adequately address rare cancer patients' RTW and work retention needs.

Trends in Palliative Care Telephone Consultation Support for Health Care Professionals: A Dutch Nationwide Registry between 2004 and 2019.

Background: Regional palliative care consultation (PCC) teams aim to support health care professionals by telephone in providing quality palliative care (PC) in the Netherlands. Objectives: The study aims to assess trends in the number and characteristics of PC telephone consultations in the Netherlands between 2004 and 2019. Design: A retrospective observational study reviewed data from the Dutch national register for PC consultations by telephone (PRADO). To assess trends in the number of consultations, three time periods were defined: 2004-2008, 2009-2013, and 2014-2019. All analyses were conducted using STATA. Results: A total of 83,554 PC telephone consultations were analyzed. There was a slight decrease in the number of consultations since 2014, from 5811 (2014) to 4914 (2019). The Dutch PCC telephone helpdesk was mainly consulted by general practitioners, with pharmacological issues (65%) and pain (44%) being the main concerns. The data included 73,833 patients, of whom 63% were 65 years or older (18-109) and 51% were male. The proportion of noncancer patients increased during the selected time periods, 2004-2008 (11%), 2009-2013 (16%), and 2014-2019 (22%). The proportion of consultations requested for hospitalized patients was higher in 2014-2019 (7.9%) than in 2009-2013 (4.5%). Conclusion: Dutch PC telephone consultations have changed over time. More PC telephone consultations were held for hospitalized patients and noncancer diseases over the past years. These trends are in line with the shift toward more integrated PC in which different services collaborate.

Clinicians' perceptions of the emotional impact of providing palliative care: A qualitative interview study.

OBJECTIVES: Many aspects of palliative care, such as managing (complicated) symptoms, conducting goals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians. Previous research on the emotional impact of providing palliative care was mainly done in specialist settings. However, the majority of palliative care is provided by clinicians who are not specialized in palliative care, and can be supported by palliative care specialists only when needed. Therefore, this study aimed to gain insight into the emotional impact of providing palliative care on clinicians, both palliative care generalists and specialists. METHODS: A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) working in hospitals, home care, or nursing homes in the Netherlands was conducted. Between February and June 2019, 13 palliative care generalists and 8 specialists were interviewed. Interviews were thematically analyzed by two researchers. RESULTS: All clinicians considered the emotional impact of providing palliative care to be substantial and experienced both positive and negative aspects of providing palliative care. Several aspects of providing palliative care can support or undermine emotional stability. These so-called facilitators and barriers, such as practicing self-care and complexity of palliative care, were found at three different levels: individual, team, and organization. SIGNIFICANCE OF RESULTS: Although clinicians experience providing palliative care as meaningful and valuable, the emotional impact is considerable. Negative and positive aspects often co-exist. Further insight into the dynamics and magnitude of the emotional impact of providing palliative care is needed in order to create a healthy working environment and develop adequate interventions.

Experiences and perspectives of patients with advanced cancer regarding work resumption and work retention: a qualitative interview study.

PURPOSE: Being able to work improves the quality of life of patients with cancer. Much is known about the return to work process of cancer survivors. Yet, studies focusing on the experiences of patients with advanced cancer who want to return to work or stay employed are scarce. Therefore, we aimed to explore the perceptions of patients with advanced cancer regarding work resumption and work retention and the barriers and facilitators they may experience. METHODS: Semi-structured interviews were conducted. Patients were included if they: (1) were diagnosed with advanced cancer, (2) worked in paid employment at time of diagnosis, and (3) were currently back in paid employment or had the intention to return to paid employment. Participants were recruited through clinicians and patient organizations. Interviews were transcribed and thematically analysed using ATLAS.ti. RESULTS: Fifteen patients (87% female, mean age 52 (SD 4; range 41-64)) were individually interviewed. Four main themes emerged from the data: (1) holding on to normalcy, (2) high understanding and divergent expectations, (3) social discomfort calls for patient-initiated alignment, and (4) laws and regulations require patient empowerment. CONCLUSION: Paid employment can contribute to the quality of life of patients with advanced cancer. The findings of this study might correct erroneous preconceptions about the work ability and work intention of patients with advanced cancer. Tools already developed for employers to support reintegration of patients with cancer should be further explored and translated to patients with advanced cancer.

Work resumption and retention in patients with advanced cancer: Experiences and perspectives of general and occupational health care professionals.

OBJECTIVE: The objectives of this study were to explore the experiences and perspectives of general and occupational health care professionals regarding work resumption and work retention of patients with advanced cancer, and to identify barriers and facilitators these professionals may encounter. METHODS: A qualitative design was applied, and individual semistructured interviews were conducted. General and occupational health care professionals were eligible to participate if they were involved in the work participation guidance of patients with advanced cancer, and were recruited through the network of the research team. Interview data were transcribed verbatim and analysed thematically via ATLAS.ti 9. RESULTS: Interviewees (N = 17) had various occupational backgrounds, for example, occupational physician, reintegration consultant, and general practitioner. Four main themes emerged from the data: (1) Assumptions and hesitations, (2) Patient initiates stakeholder communication, (3) Role dispersion: who is in charge of what? and (4) Experience with legislation creates opportunities. CONCLUSION: Whereas most interviewees had positive experiences with, and/or optimistic expectations of, the work resumption and work retention of patients with advanced cancer, several barriers to the work participation guidance of these patients were identified. Suggestions for improvement include creating widespread awareness of the possibility of work participation of patients with advanced cancer and developing reintegration guidelines for advanced cancer.

Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe).

AIM: This study aims to assess the quality of life and quality of care as experienced by patients with advanced cancer and their relatives while taking their interdependency into account. METHODS: A prospective multicentre observational study (eQuiPe study) was conducted. Quality of life scores (EORTC QLQ-C30) was compared to a matched normative population and logistic regression analyses were conducted to assess the relation between high emotional functioning (EF, measured with the EORTC QLQ-C30) and experienced quality of care (IN-PATSAT32, CQ-index PC). RESULTS: In total, 1103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower EF than the normative population (78 versus 87, p < .001). Compared to patients, relatives reported clinically relevantly lower EF (69 versus 78, p < .001). Being more satisfied with care in general (p < .05) and clarity about the key health-care provider (p < .05) was positively associated with high EF in patients. For relatives, experienced continuity of care (p < .01) and information for the patient (p < .05) were positively associated with high EF. The EF of patients (p < .001) and relatives (p < .001) were positively associated with each other and continuity of care as perceived by relatives was positively associated with high EF in patients (p < .01). CONCLUSIONS: Patients with advanced cancer reported low levels of EF but their relatives reported even lower levels of EF. Experienced integrated organisation and satisfaction with care were positively related to EF. The interdependent relation between patients' and relatives' EF and their care experiences suggests that a family-centred approach can optimise palliative cancer care. TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Treatment decision-making during outpatient clinic visit of patients with esophagogastric cancer. The perspectives of clinicians and patients, a mixed method, multiple case study.

BACKGROUND: The probability of undergoing treatment with curative intent according to the hospital of diagnosis varies for esophagogastric cancer in the Netherlands. Little is known about the factors contributing to this variation. This study aimed to improve the understanding of the differences between the multidisciplinary team meeting treatment proposal and the treatment that was actually carried out and to qualitatively investigate the differences in treatment decision-making after the multidisciplinary team meeting treatment proposal between hospitals. METHODS: To gain an in-depth understanding of treatment decision-making, quantitative data (i.e., multidisciplinary team meeting proposal and treatment that was carried out) were collected from the Netherlands Cancer Registry. Changes in the multidisciplinary team meeting proposal and applied treatment comprised changes in the type of treatment option (i.e., curative or palliative, or no change) and were calculated according to the multivariable multilevel probability of undergoing treatment with curative intent (low, middle, and high). Qualitative data were collected from eight hospitals, including observations of 26 outpatient clinic consultations, 30 in-depth interviews with clinicians, seven focus groups with clinicians, and three focus groups with patients. Clinicians and patients' perspectives were assessed using thematic content analysis. RESULTS: The multidisciplinary team meeting proposal and applied treatment were concordant in 97% of the cases. Clinicians' implementation of treatment decision-making in clinical practice varied, which was mentioned by the clinicians to be due to the clinician's personality and values. Differences between clinicians consisted of discussing all treatment options versus only the best fitting treatment option and the extent of discussing the benefits and harms. Most patients aimed to undergo curative treatment regardless of the consequences, since they believed this could prolong their life. CONCLUSION: Since changes in the multidisciplinary team meeting-proposed treatment and actual treatment were rarely observed, this study emphasizes the importance of an adequately formulated multidisciplinary team meeting proposal.

Shared Perspectives of Patients With Advanced Cancer and Their Informal Caregivers on Essential Aspects of Health Care: A Qualitative Study.

Objective: The aim of this study is to explore the essential aspects of health care according to patients with advanced cancer and their informal caregivers by using a dyadic approach. Methods: Seven focus groups and 7 in-depth semi-structured interviews were conducted. Patients with advanced cancer and informal caregivers were recruited between January 2017 and June 2017 in 6 Dutch hospitals. All interviews were audiotaped, transcribed verbatim, and open coded using a thematic analysis approach. For this analysis Atlas.ti was used. Results: There was congruence between the aspects mentioned by patients and their informal caregiver. Two essential aspects of quality of care arose: "relation" and "organization of care." Regarding relation, patients and informal caregivers found it essential that health care professionals were personally engaged and provided support and compassion. Regarding organization of care, patients and informal caregivers expressed the importance of supportive care being offered multiple times during the disease trajectory, continuity of care, and well-organized logistics tailored to their needs. Conclusion: This study generates awareness among health care professionals that patients with advanced cancer and their relatives have similar perspectives on essential aspects of care and may increase anticipation to meet health care preferences to optimize care.

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study.

PURPOSE: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden. METHODS: This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden. RESULTS: Most of the 746 relatives were the patient's partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR = .87) and were less resilient (OR = .76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR = .96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR = .39). CONCLUSION: A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation. TRIAL REGISTRATION NUMBER: NTR6584 (date of registration: 30 June 2017).

Healthcare Professionals' Work-Related Stress in Palliative Care: A Cross-Sectional Survey.

CONTEXT: Providing palliative care can lead to work-related stress and ultimately to burnout. The need for palliative care will further increase due to population aging and people living longer with life-threatening diseases. Therefore, a healthy palliative care workforce is vital. OBJECTIVES: This study aims to get insight into the experienced work-related stress among healthcare professionals providing palliative care in the Netherlands and their strategies and needs in relation to maintaining a healthy work-life balance. METHODS: A cross-sectional online survey among members of the Dutch Association for Palliative Care Professionals was conducted between February and March 2020. Burnout was assessed by the validated Burnout Assessment Tool. Self-constructed questions assessed strategies and needs of healthcare professionals providing palliative care regarding work-related stress. RESULTS: In total 179 eligible respondents responded (response rate 54%). Respondents were mostly female (79%) and older than 50 years (66%). Most respondents were nurses (47%) and physicians (39%). Two-thirds of respondents (69%) experienced a median level of burnout and 2% a (very) high level. Furthermore, 7% had been on sick leave due to burnout. Although healthcare professionals engage on average in 3.7 coping activities, a quarter (23%) felt that these activities were not sufficient to maintain balanced. Respondents feel a need for activities aimed at the team and organisation level such as feeling emotionally safe within their team. CONCLUSION: Symptoms of burnout are quite prevalent among healthcare professionals providing palliative care in the Netherlands. Healthcare professionals have a need for team and organisation approaches to maintain a healthy work-life balance.