Barriers in cancer trajectories of patients with pre-existing severe mental disorders-A systematic review.

BACKGROUND: Patients with pre-existing severe mental disorders are significantly less likely to receive guideline-recommended cancer treatment and seems to have a significantly lower rate of cancer survival compared to patients with cancer without mental disorders. AIM: To perform a systematic review on barriers at patient-, provider- and system-levels in cancer trajectories of patients with pre-existing severe mental disorders. METHOD: A systematic review was performed following the PRISMA guidelines (PROSPERO ID: CRD42022316020). RESULTS: Nine eligible studies were identified. Barriers at patient-level included lack of self-care and ability to recognize physical symptoms and signs. Provider-level barriers included stigma from health care professionals on mental disorders, whereas system-level barriers included fragmented health care and consequences of this. CONCLUSION: This systematic review found that barriers at patient-, provider- and system-levels exist in cancer trajectories for patients with severe mental disorders, causing disparities in cancer care. Further research is needed to improve cancer trajectories for patients with severe mental disorder.

The SWIM study: Ethnic minority women's ideas and preferences for a tailored intervention to promote national cancer screening programmes-A qualitative interview study.

BACKGROUND: Ethnic minority women from non-Western countries are less likely than the native women to participate in screening programmes for cervical cancer, breast cancer and colorectal cancer. This social inequality can result in loss of possibility for prevention, delayed diagnosis and treatment and, ultimately, lower chance of survival. Developing a tailored intervention might be the solution to reduce social inequalities in cancer screening, and a key feature in intervention research is to consult the target group. OBJECTIVE: To explore ethnic minority women's own ideas and preferences for a cancer screening intervention and identify their attitudes to different strategies. METHODS: An interview study with five focus group interviews, two group interviews with an interpreter and three individual interviews. Thirty-seven women from 10 non-Western countries contributed to the study. The interviews were audio-recorded and transcribed verbatim followed by a thematic analysis. RESULTS: According to the women, a tailored intervention should focus on knowledge in the form of face-to-face teaching. The women further suggested information material in their own language with a simple, positive and concrete communication strategy. They would like to be involved in an awareness strategy and share the knowledge with their network. CONCLUSION: Ethnic minority women were interested in a tailored intervention, and they were keen to contribute with ideas and preferences. The findings emphasized the potential of a tailored intervention with specific suggestions to the content when attempting to reduce inequality in cancer screening participation. PATIENT OR PUBLIC CONTRIBUTION: Minority women were involved in the interview study.

Perceptions about cancer and barriers towards cancer screening among ethnic minority women in a deprived area in Denmark - a qualitative study.

BACKGROUND: Screening programmes for cervical cancer, breast cancer and colorectal cancer have been implemented in many Western countries to reduce cancer incidence and mortality. Ethnic minority women are less likely to participate in cancer screening than the majority population. In worst case this can result in higher incidence rates, later diagnosis and treatment and ultimately inferior survival. In this paper we explored the perceptions about cancer and perceived barriers towards cancer screening participation among ethnic minority women in a deprived area in Denmark. METHODS: Interview study with ethnic minority women in a deprived area in Denmark. The interviews were transcribed verbatim followed by an inductive content analysis. RESULTS: Cancer was perceived as a deadly disease that could not be treated. Cancer screening was perceived as only relevant if the women had symptoms. Knowledge about cancer screening was fragmented, often due to inadequate Danish language skills and there was a general mistrust in the Danish healthcare system due to perceived low medical competences in Danish doctors. There was, however, a very positive and curious attitude regarding information about the Danish cancer screening programmes and a want for more information. CONCLUSION: Ethnic minority women did not have sufficient knowledge about cancer and the purpose of cancer screening. Perceptions about cancer screening were characterised by openness and the study showed positive and curious attitudes towards screening participation. The findings emphasise the importance of culturally adapted interventions for ethnic minority women in attempts to reduce inequality in screening participation.

Advance care planning and place of death, hospitalisation and actual place of death in lung, heart and cancer disease: a randomised controlled trial.

OBJECTIVES: Advance care planning (ACP) can be a way to meet patients' end-of-life preferences and enhance awareness of end-of-life care. Thereby it may affect actual place of death (APOD) and decrease the rate of hospitalisations. The aim was to investigate if ACP among terminally ill patients with lung, heart and cancer diseases effects fulfilment of preferred place of death (PPOD), amount of time spent in hospital and APOD. METHODS: The study was designed as a randomised controlled trial. Patients were assessed using general and disease-specific criteria and randomised into groups: one received usual care and one received usual care plus ACP. The intervention consisted of a discussion between a healthcare professional, the patient and their relatives about preferences for end-of-life care. The discussion was documented in the hospital file. RESULTS: In total, 205 patients were randomised, of which 111 died during follow-up. No significant differences in fulfilment of PPOD (35% vs 52%, p=0.221) or in amount of time spent in hospital among deceased patients (49% vs 23%, p=0.074) were found between groups. A significant difference in APOD was found favouring home death in the intervention group (17% vs 40%, p=0.013). CONCLUSION: Concerning the primary outcome, fulfilment of PPOD, and the secondary outcome, time spent in hospital, no differences were found. A significant difference concerning APOD was found, as more patients in the intervention group died at home, compared with the usual care group. TRIAL REGISTRATION NUMBER: NCT01944813.

Advance care planning for patients and their relatives.

BACKGROUND: Advance care planning (ACP) has been suggested to improve the quality of life (QoL) and mental wellbeing in severely ill patients and their relatives. AIM: To investigate the effects of ACP among patients with lung, heart and cancer diseases with an estimated life-span of up to 12 months. METHODS: Patients and relatives were randomised into two groups: one receiving usual care and one receiving ACP and usual care. Themes from the ACP discussion were documented in patients' electronic medical file. Participants completed self-reported questionnaires four to five weeks after randomisation. FINDINGS: In total, 141 patients and 127 relatives participated. No significant differences were found according to outcomes. However, patients with non-malignant diseases had the highest level of anxiety and depression; these patients seemed to benefit the most from ACP, though not showing statistically significant results. CONCLUSION: No significant effects of ACP among patients with lung, heart, and cancer diseases and their relatives regarding HRQoL, anxiety, depression, and satisfaction with healthcare were found.

Asking terminally ill patients about their preferences concerning place of care and death.

BACKGROUND: Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD). AIM: The aim of this study was to examine possible differences between pragmatic and ideal preferences of terminally ill patients, as well as differences between asking patients about preferences concerning PoC and PoD. METHODS: Structured interviews were performed with terminally ill cancer patients at inclusion and a follow-up questionnaire was completed 1 month later. Answers were compared using kappa (k) statistics and Pearson's c2-test. RESULTS: Among 96 cancer patients, agreement between pragmatic and ideal preferences was statistically significantly different (p=<0.001). Agreement between preferences for PoC and PoD was high (k:0.76-0.85). CONCLUSION: Differences exist between pragmatic and ideal EoL preferences, whereas preferences for PoC and PoD were found to be similar. These findings highlight the importance of the phrasing of questions when uncovering patients' preferences for EoL care.

Preferred Place of Care and Death in Terminally Ill Patients with Lung and Heart Disease Compared to Cancer Patients.

OBJECTIVES: The dual aim of this study is, first, to describe preferred place of care (PPOC) and preferred place of death (PPOD) in terminally ill patients with lung and heart diseases compared with cancer patients and second, to describe differences in level of anxiety among patients with these diagnoses. BACKGROUND: Previous research on end-of-life preferences focuses on cancer patients, most of whom identify home as their PPOC and PPOD. These preferences may, however, not mirror those of patients suffering from nonmalignant fatal diseases. DESIGN: The study was designed as a cross-sectional study. SETTING: Eligible patients from the recruiting departments filled in questionnaires regarding sociodemographics, PPOC and PPOD, and level of anxiety. RESULTS: Of the 354 eligible patients, 167 patients agreed to participate in the study. Regardless of their diagnosis, most patients wished to be cared for and to die at home. Patients with cancer and heart diseases chose hospice as their second most common preference for both PPOC and PPOD, whereas patients with lung diseases chose nursing home and hospice equally frequent as their second most common preference. Regardless of their diagnosis, all patients had a higher level of anxiety than the average Danish population; patients with heart diseases had a much higher level of anxiety than patients with lung diseases and cancer. CONCLUSION: Patient preferences for PPOC and PPOD vary according to their diagnoses; tailoring palliative needs to patients' preferences is important regardless of their diagnosis.

[Care and treatment can be planned in advance with advance care planning].

Advance care planning (ACP) is a discussion between an incurably ill patient, a healthcare professional and if possible, a relative about preferences for end-of-life care, and ACP may improve the communication in this situation. However, in the Danish healthcare system there is no formalized and systematically used standard procedure for discussions with patients about their knowledge of their treatment options, values and preferences. In this article we review the concept of ACP, including definition, experiences from abroad and the status of ACP in Denmark.

The diverse impact of advance care planning: a long-term follow-up study on patients' and relatives' experiences.

BACKGROUND: Advance care planning (ACP) is a process of discussing and recording patients' preferences for future care, aiming to guide healthcare decisions at the end of life (EOL). AIM: To explore nuances in the long-term impact of ACP by studying patient and relative experiences. DESIGN: A qualitative follow-up interview study. Interviews were recorded, transcribed and analysed using thematic synthesis. SETTING/PARTICIPANTS: 3 patients with a life-limiting disease (lung or heart disease), affiliated with a major Danish hospital, and 7 relatives were interviewed 1 year after participating in an ACP discussion. RESULTS: The experiences were diverse. Some patients and relatives felt 'relieved', 'more secure' and more in control due to ACP. To some, ACP had led to open communication rather than 'beating around the bush', and to spending more quality time together. However, others perceived ACP as irrelevant. Some stated that the patient's wishes had not been met regardless of ACP. Others felt that EOL questions cannot be realistically considered until 'you're in the middle of it', because many factors are involved. In one case, participating in ACP led to a patient-relative conflict, resulting in EOL issues being 'tucked away'. CONCLUSIONS: The study reveals great diversity in patient and relative experiences of ACP. The study challenges previous research which mainly emphasises ACP as a valuable tool to optimise EOL care. This study stresses the importance of awareness of the highly individual nature of preferences and needs of patients and relatives regarding information, involvement and communication about EOL care.

Talking about sensitive topics during the advance care planning discussion: A peek into the black box.

OBJECTIVE: Advance care planning (ACP) discussions are emphasized as a valuable way of improving communication about end-of-life care. Yet we have very little knowledge of what goes on during actual ACP discussions. The aim of our study was to explore how the sensitive topics of end-of-life decisions are addressed in concrete ACP discussions, with special focus on doctor-patient interactions. METHOD: Following a discourse-analysis approach, the study uses the concept of doctor and patient "voices" to analyze 10 directly observed and audiotaped ACP discussions among patients, relatives, and a physician, carried out in connection with a pilot study conducted in Denmark. RESULTS: Previous studies of directly observed patient-physician discussions about end-of-life care show largely ineffective communication, where end-of-life issues are toned down by healthcare professionals, who also tend to dominate the discussions. In contrast, the observed ACP discussions in our study were successful in terms of addressing such sensitive issues as resuscitation and life-prolonging treatment. Our analysis shows that patients and relatives were encouraged to take the stage, to reflect, and to make informed choices. Patients actively explored different topics and asked questions about their current situation, but some also challenged the concept of ACP, especially the thought of being able to take control of end-of-life issues in advance. SIGNIFICANCE OF RESULTS: Our analysis indicates that during discussions about sensitive end-of-life issues the healthcare professional will be able to pose and explore sensitive ACP questions in a straightforward manner, if the voices that express empathy and seek to empower the patient in different ways are emphasized.

Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care.

BACKGROUND: A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe. AIM: To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country. DESIGN: (1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for general practitioners and specialists to make comments. Iterations of the toolkit were then presented at international palliative care and primary care conferences. RESULTS: Being unable to identify appropriate patients for palliative care in the community was a major barrier internationally. The systematic review identified tools that might be used to help address this. Various facilitators such as national strategies were identified. A primary palliative care toolkit has been produced and refined, together with associated guidance. CONCLUSION: Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally.

Congruence between preferred and actual place of care and death among Danish cancer patients.

BACKGROUND: Meeting patient's preferences is an important outcome in palliative care. No Scandinavian study has reported systematically collected preferences from patients regarding place of care (POC) and place of death (POD). The extent of possible incongruence between patients' preferences and reality remains unknown. AIM: The aim of this study was to describe patients' preferred POC and POD and changes in preferences over time and to evaluate congruence between preferences and reality. Furthermore, the aim was to search for predictive factors regarding patients' wishes and fulfilment of these. METHOD: This is a prospective interview and questionnaire study. SETTING/PARTICIPANTS: The study was conducted in the former Aarhus County, Denmark and 96 end-stage cancer patients participated. RESULTS: Of the patients, who stated a preference, 84% preferred home care and 71% preferred home death. A positive association between living with a partner and both wishing for home care and home death was observed (prevalence ratio (PR): 1.66 (95% confidence intervals (CI): 1.07, 2.58), p = 0.02 and PR: 2.33 (95% CI: 1.14, 4.77), p = 0.02, respectively). Marked changes in preferences were observed. Overall, preferences were met for approximately half of the patients, although kappa values were low (κ=0.132 for POC and κ=0.034 for POD).We found a significant association between being cared for in the preferred place and having contact with a palliative care team (PR: 2.01 (95% CI: 1.02, 3.98), p = 0.045). CONCLUSION: Regular discussions with patients on this subject are needed. Social and professional support is of importance in meeting patients' preferences. Larger scaled studies and research focusing on meeting patients' preferences are needed.

Translation, adaptation and data quality of a Danish version of the Burden Scale for Family Caregivers.

BACKGROUND: The burden of caregiving can have various negative consequences. There is a need for health professionals to be able to measure the burden of caregiving among relatives of end-stage cancer patients in a valid way. The Burden Scale for Family Caregivers (BSFC) has 28 items and was developed as a clinical tool for measuring the self-reported burden among family caregivers caring for a relative at home. AIM: To make a standardized translation of the English version of the BSFC into a Danish version and to report data quality in a group of Danish family caregivers caring for palliative care cancer patients. MATERIAL AND METHOD: The BSFC was translated following WHO guidelines. Ninety family caregivers of end-stage cancer patients were sent BSFC as part of a larger questionnaire. A total of 75 (83%) returned the questionnaire. Excluding responses with two or more missing items, 58 (64%) participants completed the BSFC. RESULTS: The words 'care', 'caregiving' and 'caregiver' were a challenge to the translators. The item response was moderate with missing answers from 4.0 to 18.7%. For the total sum-score, mean perceived burden amongst participants was low (mean score 23.56 of max 84.00). Cronbach's alpha was 0.91 and average inter-item correlation 0.26. Item-rest correlations ranged from -0.02 to 0.72 and were below 0.40 for seven items. High scores on the BSFC was statistically significantly correlated with the feeling of social isolation (ρ = -0.332, p = 0.013) and with the dyspnoea subscale of the EORTC-QLQ-15-PAL (ρ = 0.322, p = 0.012) but not with poor self-reported health (ρ = -0.036, p = 0.805). CONCLUSION: The BSFC was translated into Danish and showed problems with some data quality and validity measures. Hence, further psychometric testing on a larger population is needed before the scale can be recommended as a sum-scale for scientific and clinical use.

Who is the key worker in palliative home care?

OBJECTIVE: Palliative home care involves coordination of care between the professionals involved. The NICE guideline on supportive and palliative care (UK) recommends that teams, regardless of their base, should promote continuity for patients. This may involve nomination of a coordinating "key worker". This study aimed to explore who acts as key worker and who ought to take on this role in the views of patients, relatives, and primary care professionals. Furthermore, it aimed to explore the level of agreement on this issue between study participants. DESIGN: Interview and questionnaire study. SETTING: Former County of Aarhus, Denmark (2008-2009). SUBJECTS: Ninety-six terminally ill cancer patients, their relatives, general practitioners (GPs), and community nurses (CNs). MAIN OUTCOME MEASURES: Actual key worker as valued by patients, relatives, and primary care professionals; ideal key worker as valued by patients and relatives. RESULTS. Patients, relatives, GPs, and CNs most often saw themselves as having been the key worker. When asked about the ideal key worker, most patients (29%; 95%CI: 18;42) and relatives (32%; 95%CI: 22;45) pointed to the GP. Using patients' views as reference, we found very limited agreement with relatives (47.7%; k = 0.05), with GPs (30.4%; k = 0.01) and with CNs (25.0%; k = 0.04). Agreement between patients and relatives on the identity of the ideal key worker was of a similar dimension (29.6%; k = 0.11). CONCLUSION: Poor agreement between patients, relatives, and professionals on actual and ideal key worker emphasizes the need for matching expectations and clear communication about task distribution in palliative home care.