Self-efficacy of advanced cancer patients for participation in treatment-related decision-making in six European countries: the ACTION study.

PURPOSE: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients' coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer. METHODS: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores. RESULTS: The sample included 660 patients with a mean age of 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.41 (95% CI 0.77 to 2.06)), better quality of life (B 2.34 (95% CI 0.89 to 3.80)), and more patient satisfaction (B 7.59 (95% CI 5.61 to 9.56)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 7.85 (95% CI 2.28 to 13.42)), whereas Italian patients had a lower level ((B -7.50 (95% CI -13.04 to -1.96)) than those in Belgium. CONCLUSION: Coping style, quality of life, and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes.

Assessing suffering of patients on cancer treatment and of those no longer treated using ESAS-Total Care (TC).

AIM: The aim of the study was to assess the suffering of patients on oncologic treatment and of those no longer on treatment. Preliminarily, we aimed to confirm the psychometric properties of Edmonton Symptom Assessment System-Total Care (ESAS-TC) in different stages of the disease. The ESAS-TC screens physical and psychological symptoms, but also spiritual pain, discomfort deriving from financial problems associated with illness, and suffering related to social isolation. METHODS: A sample of consecutive advanced cancer patients on oncologic therapies treated at the Internistic and Geriatric Supportive Care Unit (IGSCU) of Istituto Nazionale dei Tumori, Milano, and of terminal patients no longer on treatment and cared for by the Fondazione ANT palliative home care team were asked to fill the ESAS-TC. In order to strengthen the previous validation study of the ESAS-TC, 3-ULS (to assess social isolation), JSWBS (to assess spiritual well-being), COST-IT (to assess financial distress), and KPS (to assess functional status) were administered too. RESULTS: The questionnaires were self-reported by 108 patients on treatment (52% >60 years old, female 53%, and 61% with KPS 90-100) and by 94 home care patients (71% >60 years old, female 51%, and 68% with KPS 10-50). The sound psychometric characteristics of ESAS-TC were confirmed. Patients on treatment showed lower total ESAS-TC score (19.3 vs 52.7, p<.001) after controlling for age and functional status, and lower financial distress (p.<001). Financial distress, spiritual suffering, and social isolation, after controlling for age, showed a significantly higher score in home care patients. CONCLUSIONS: Only through an adequate routine assessment with validated tools is it possible to detect total suffering, the "Total pain" of patients, and treat it through a multidisciplinary approach. The study confirms the reliability and validity of the Italian version of ESAS-TC and the importance of supportive and early palliative care fully integrated with oncological treatment.

Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning.

BACKGROUND: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. AIM: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. DESIGN: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. SETTING/PARTICIPANTS: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. RESULTS: Patients with a good performance status were underrepresented in the intervention group (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). CONCLUSIONS: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established.

Impacts of an advance care planning intervention on close relationships.

OBJECTIVES: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs). METHODS: Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices® ACP intervention from the perspectives of patients and their PRs. A phenomenological approach was undertaken. RESULTS: Our findings show that taking part in the ACTION ACP intervention provides a communicative space for patients and their PRs to share their understanding and concerns about the illness and its consequences. In some cases, this may strengthen relationships by realigning patients' and PRs' understanding and expectations and affirming their mutual commitment and support. SIGNIFICANCE OF RESULTS: The most significant consequence of the ACP process in our study was the deepening of mutual understanding and relationship between some patients and PRs and the enhancement of their sense of mutuality and connectedness in the present. However, being a relational intervention, ACP may raise some challenging and distressing issues. The interpersonal dynamics of the discussion require skilled and careful professional facilitation.

Italian version of the Edmonton Symptom Assessment System (ESAS)-Total Care (TC): development and psychometric validation in patients undergoing cancer treatment or follow-up.

INTRODUCTION: The routine use of patient-reported outcomes (PROs) in clinical practice improves quality of care, it helps in reducing the access to emergency services and unscheduled visits, and it can improve cancer patients' time survival. The Edmonton Symptom Assessment System (ESAS) is a PRO largely used in different care settings to monitor physical and psychological symptoms. Nonetheless, along with these symptoms, literature also highlighted the presence and effect of spiritual pain, financial distress, and social isolation on quality of care, treatment effectiveness, and survival. AIM: The aims of the current study were (a) to complete the Italian version of the ESAS validation process by adding the missing symptom "insomnia" and (b) to develop and validate the ESAS-Total Care (ESAS-TC) that is intended to evaluate and screen not only physical and psychological symptoms but also spiritual pain, discomfort deriving from financial problems associated with illness, and suffering related to social isolation. METHODS: A sample of Italian native outpatients, who referred to the dedicated Supportive Care Unit of the Fondazione IRCCS, Istituto Nazionale deiTumori (INT), Milano, were asked to fill the ESAS-TC to assess item properties, factorial structure, internal consistency, test-retest reliability (patients were asked to retake the scale after 2-6 weeks), and external validity. Concerning the latter, other self-administered scales were employed to assess perceived stress (Perceived Stress Scale), unmet needs (using theNeed Evaluation Questionnaire that describes informative, assistance/care, relational, needs for psycho-emotional support, material needs), and perceived social support (administering the Multidimensional Scale of Perceived Social Support that evaluates perceived support of family, friends, and significant others in the wider social field). RESULTS: The scales were administered to 243 patients with solid (90%) and hematologic (10%) cancers, mean age 62.6, female 76.5%. Analysis suggested that a single factor better represents the structure of the ESAS scales, their internal consistency and test-retest reliability were good, and evidence of construct and criterion validity were provided. Additionally, incremental validity of the ESAS-TC was proved showing that the added items offer a unique contribution in predicting the patient's stress. Finally, known groups validity was confirmed testing the differences in the ESAS scores due to the Karnofsky Performance Status. CONCLUSIONS: The current study allowed to complete the validation of the Italian version of the ESAS and to develop a psychometrically sound scale, the ESAS-Total Care, that potentially helps in moving cancer research toward personalized total cancer care.

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial.

OBJECTIVE: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. METHODS: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. RESULTS: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. CONCLUSION: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

Missing not at random in end of life care studies: multiple imputation and sensitivity analysis on data from the ACTION study.

BACKGROUND: Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer. METHODS: Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between key indicators and on simple correlations. RESULTS: Up to 39% of follow-up data were missing. Results under MAR reflected that missingness was related to poorer health status. Correlations between variables, although very small, changed according to the imputation method, as well as the differences in scores by gender, indicating a certain sensitivity of the results to the violation of the MAR assumption. CONCLUSIONS: The findings confirmed the importance of undertaking this kind of analysis in end-of-life care studies.

Functional impairment, symptom severity, and overall quality of life in patients with advanced lung or colorectal cancer in six European countries: baseline findings from the ACTION study.

BACKGROUND: People with advanced cancer often suffer from various symptoms, which can arise from the cancer itself and its treatment, the illness experience, and/or co-morbid conditions. Important patient-reported outcomes such as functional status, symptom severity, and quality of life (QoL) might differ between countries, as countries vary with regard to contextual factors such as their healthcare system. PURPOSE: To assess self-reported emotional functioning, physical functioning, symptoms, and overall QoL in patients with advanced lung or colorectal cancer from six European countries, particularly in relation to their country of residence. METHODS: We used baseline patient data from the ACTION trial, including socio-demographic and clinical data as well as patient-reported data regarding functioning, symptoms, and overall QoL (EORTC QLQ-C15-PAL). RESULTS: Data from 1117 patients (55% lung cancer stage III/IV, 45% colorectal cancer stage IV) were used. The highest (worst) average symptom score was found for fatigue. We found similarities but also important differences in the outcomes across countries. The best scores (the highest for emotional functioning and QoL, the lowest for symptoms) were reported by Dutch and Danish patients. Belgian patients reported relatively low emotional functioning. CONCLUSION: The optimization of functioning, symptom relief, and overall QoL should be important objectives of healthcare professionals who take care of patients with advanced cancer. There are similarities, but also substantial differences across countries in functional status, symptoms, and overall QoL. Policymakers should take these differences into account and invest in offering health care catered to the needs of their population.

Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

BACKGROUND: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. METHODS AND FINDINGS: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. CONCLUSIONS: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. TRIAL REGISTRATION: ISRCTN registry ISRCTN63110516.

Coping strategies of patients with advanced lung or colorectal cancer in six European countries: Insights from the ACTION Study.

OBJECTIVE: Even when medical treatments are limited, supporting patients' coping strategies could improve their quality of life. Greater understanding of patients' coping strategies, and influencing factors, can aid developing such support. We examined the prevalence of coping strategies and associated variables. METHODS: We used sociodemographic and baseline data from the ACTION trial, including measures of Denial, Acceptance, and Problem-focused coping (COPE; Brief COPE inventory), of patients with advanced cancer from six European countries. Clinicians provided clinical information. Linear mixed models with clustering at hospital level were used. RESULTS: Data from 675 patients with stage III/IV lung (342, 51%) or stage IV colorectal (333, 49%) cancer were used; mean age 66 (10 SD) years. Overall, patients scored low on Denial and high on Acceptance and Problem-focused coping. Older age was associated with higher scores on Denial than younger age (ß = 0.05; CI[0.023; 0.074]), and patients from Italy (ß = 1.57 CI[0.760; 2.388]) and Denmark (ß = 1.82 CI[0.881; 2.750]) scored higher on Denial than patients in other countries. CONCLUSIONS: Patients with advanced cancer predominantly used Acceptance and Problem-focused coping, and Denial to a lesser extent. Since the studied coping strategies of patients with advanced cancer vary between subpopulations, we recommend taking these factors into account when developing tailored interventions to support patients' coping strategies.

Assessing Emotional Functioning with Increased Power: Relative Validity of a Customized EORTC Short Form in the International ACTION Trial.

OBJECTIVES: There is a need to improve the assessment of emotional functioning (EF). In the international Advance Care Planning: an Innovative Palliative Care Intervention to Improve Quality of Life in Cancer Patients - a Multi-Centre Cluster Randomized Clinical Trial (ACTION) trial involving patients with advanced cancer, EF was assessed by a customized 10-item short form (EF10). The EF10 is based on the European Organisation for Research and Treatment of Cancer (EORTC) EF item bank and has the potential for greater precision than the common EORTC Quality of Life Questionnaire Core 30 four-item scale (EF4). We assessed the relative validity (RV) of EF10 compared with EF4. METHODS: Patients from Belgium, Denmark, Italy, the Netherlands, Slovenia, and the United Kingdom completed EF10 and EF4, and provided data on generic quality of life, coping, self-efficacy, and personal characteristics. Based on clinical and sociodemographic variables and questionnaire responses, 53 "known groups" that were expected to differ were formed, for example, females versus males. The EF10 and EF4 were first independently compared within this known group, for example, the EF10 score of females vs the EF10 score of males. When these differences were significant, the RV was calculated for the comparison of the EF10 with the EF4. RESULTS: A total of 1028 patients (57% lung, 43% colorectal cancer) participated. Forty-five of the 53 known-groups comparisons were significantly different and were used for calculating the RV. In 41 of 45 (91%) comparisons, the RV was more than 1, meaning that EF10 had a higher RV than EF4. The mean RV of EF10 compared with that of EF4 was 1.41, indicating superior statistical power of EF10 to detect differences in EF. CONCLUSIONS: Compared with EF4, EF10 shows superior power, allowing a 20% to 34% smaller sample size without reducing power, when used as a primary outcome measure.

Construction of new personal meanings by cancer patients: a qualitative analysis in an Italian patient population.

PURPOSE: The goal of this study is to investigate the meaning that cancer patients in active therapy and/or rehabilitation give to their illness and resources they rely on to build new experiences of meaning and a future perspective. METHODS: The present study consisted in a summative content analysis of answers to open questions of the Purpose In Life (PIL) Questionnaire administered to 158 consecutive patients with non-advanced cancer (no metastases). The PIL is an attitude scale that indicates the degree of attainment of meaning and purpose in life and is divided into three sections: a first 20-item quantitative section, with statements rated on a 7-point verbal scale with two anchoring phrases (part A); a qualitative section with 13 open-end items and paragraph composition section addressing the future goals (part B) and past meaningful experience (part C). For the present study, we analyzed the answers to open questions, most interesting in a therapeutic contest related to the meanings associated with life, illness, and suffering to understand the experienced of the cancer patients. RESULTS: The main recurring themes in PIL section B analyzed associated to the sense of life, disease, and death are as follows: meaning (positive/negative), personal dimension, religiousness; physical health, family, normal life; negative sense of death, the end, natural transition, religious belief, consolation, mystery, rejection; opportunity, negativity. Whereas main themes emerging from section C were associated to life goals of the interviewed patients: the desire of realization in the future perspective; the value of life; physical health and healing; guiding values; plus three more themes, distinguishable, but with a minor recurrence: legacy responsibility, religiousness, lack of purpose/resignation. CONCLUSION: The use of summative content analysis evidenced the recurrence of a strong sense of positivity, present in the majority of the interviews. In particular, this positivity is shown by the use of words associated frequently to self-consciousness and self-evaluation, desire of happiness, and desire of contributing to the good of significant others and of taking care of your own life in order to give a positive contribution.

Discussions about palliative sedation in hospice: Frequency, timing and factors associated with patient involvement.

OBJECTIVE: To investigate whether and when palliative sedation was discussed with hospice patients with cancer and/or with their families and factors associated with patient involvement in such discussions. METHODS: Medical records of all patients with cancer who died in an Italian hospice in 2014-2015 (N = 326) were retrospectively reviewed. Multiple logistic regression was used to assess the association between patients' characteristics and palliative sedation discussion with the patient versus palliative sedation discussion only with the family. RESULTS: Palliative sedation discussion was in 51.8% of the cases reported in the record. In most of the cases, discussions were conducted pre-emptively. Palliative sedation was used for 67.3% of the patients who were involved in the discussion and for 32.7% of the patients when the topic was discussed only with the family. Patient involvement in palliative sedation discussions was negatively associated with living with others (OR 0.34, CI 0.15; 0.77), and positively associated with awareness of prognosis (OR 5.61, CI 2.19; 14.33) and days of survival after hospice admission (OR 3.41, CI 1.55; 7.51). CONCLUSION: Policies encouraging patient involvement in palliative care decision-making, including palliative sedation, should be implemented and their adoption should be carefully examined. Prospective studies addressing this topic are needed.

Integration of oncology and palliative care: a Lancet Oncology Commission.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

Spiritual care in cancer patients: a need or an option?

PURPOSE OF REVIEW: Because of cancer is generally perceived as a life-threatening illness, patients often develop spiritual needs upon the diagnosis. Spirituality impacts patient quality of life (QoL) and provides a context in which to derive hope and meaning to cope with illness. The goal of this review is to give an overview of the most relevant studies with a focus on the relationship between spiritual well being, QoL and hope in patients with cancer, in addition to exploring the importance of spiritual issues both for patients and healthcare professionals. RECENT FINDINGS: Spiritual well being with its dimensions of faith, meaning, and peace is a central component for the overall QoL. A strong spiritual well being decreases symptom severity, the level of hopelessness and the desire for hastened death in cancer patients. However, in the medical setting the provision of spiritual care remains poor, although patients, especially at the end of life, would like their spiritual needs to be addressed as part of the global care. SUMMARY: Care for cancer patients goes beyond just caring for the person's body. The assessment of spiritual/religious needs can be considered the first step in designing needs-tailored interventions.

Longitudinal assessment of the impact of adapted physical activity on upper limb disability and quality of life in breast cancer survivors from an Italian cohort.

PURPOSE: The purpose of this study was to evaluate the effectiveness of a specific adapted physical activity (APA) protocol on upper limb disability and quality of life in breast cancer survivors and to assess longitudinally the possible role of APA on long-term benefits. METHODS: Breast cancer survivors from an Italian cohort were assessed by fitness tests (shoulder-arm mobility, range of motion, and back flexibility) before and after 8-week APA. Quality of life and back and surgical shoulder pain intensity were evaluated by Short Form-12 and numerical rating scale questionnaires, respectively. At 1.5-year post-APA follow-up, survivors were evaluated as at baseline/post-APA to assess long-term effects. RESULTS: A statistically significant improvement in shoulder-arm mobility, pain perception, and quality of life was observed in breast cancer survivors after APA intervention. Longitudinal analyses indicated an overall decrease in the achieved benefits at 1.5-year post-APA. CONCLUSIONS: The survivorship phase of breast cancer requires a multidisciplinary collaboration involving either the cancer-care medical team or APA professionals to manage psychophysical outcomes. A specific APA protocol may represent an effective countermeasure to reduce post-treatment upper limb disability and improve the quality of life in breast cancer survivors. Participation in structured APA protocols should be maintained over time to preserve the achieved benefits.

Quality of primary palliative care for older people with mild and severe dementia: an international mortality follow-back study using quality indicators.

Background: measuring the quality of primary palliative care for older people with dementia in different countries is important to identify areas where improvements can be made. Objective: using quality indicators (QIs), we systematically investigated the overall quality of primary palliative care for older people with dementia in three different countries. Design/setting: a mortality follow-back survey through nation- and region-wide representative Sentinel Networks of General Practitioners (GPs) in Belgium, Italy and Spain. GPs registered all patient deaths in their practice. We applied a set of nine QIs developed through literature review and expert consensus. Subjects: patients aged 65 or older, who died non-suddenly with mild or severe dementia as judged by GPs (n = 874). Results: findings showed significantly different QI scores between Belgium and Italy for regular pain measurement (mild dementia: BE = 44%, IT = 12%, SP = 50% | severe dementia: BE = 41%, IT = 9%, SP = 47%), acceptance of approaching death (mild: BE = 59%, IT = 48%, SP = 33% | severe: BE = 41%, IT = 21%, SP = 20%), patient-GP communication about illness (mild: BE = 42%, IT = 6%, SP = 20%) and involvement of specialised palliative services (mild: BE = 60%, IT = 20%, SP = 77%). The scores in Belgium differed from Italy and Spain for patient-GP communication about medical treatments (mild: BE = 34%, IT = 12%, SP = 4%) and repeated multidisciplinary consultations (mild: BE = 39%, IT = 5%, SP = 8% | severe: BE = 36%, IT = 10%, SP = 8%). The scores for relative-GP communication, patient death outside hospitals and bereavement counselling did not differ between countries. Conclusion: while the countries studied differed considerably in the overall quality of primary palliative care, they have similarities in room for improvement, in particular, pain measurement and prevention of avoidable hospitalisations.

Differences in primary palliative care between people with organ failure and people with cancer: An international mortality follow-back study using quality indicators.

BACKGROUND: Measuring the quality of palliative care in a systematic way using quality indicators can illuminate differences between patient groups. AIM: To investigate differences in the quality of palliative care in primary care between people who died of cancer and people who died of organ failure. DESIGN: Mortality follow-back survey among general practitioners in Belgium, the Netherlands, and Spain (2013-2014), and Italy (2013-2015). A standardized registration form was used to construct quality indicators regarding regular pain measurement, acceptance of the approaching end of life, communication about disease-related topics with patient and next-of-kin; repeated multidisciplinary consultations; involvement of specialized palliative care; place of death; and bereavement counseling. SETTING/PARTICIPANTS: Patients (18+) who died non-suddenly of cancer, cardiovascular disease, or respiratory disease ( n = 2360). RESULTS: In all countries, people who died of cancer scored higher on the quality indicators than people who died of organ failure, particularly with regard to pain measurement (between 17 and 35 percentage-point difference in the different countries), the involvement of specialized palliative care (between 20 and 54 percentage points), and regular multidisciplinary meetings (between 12 and 24 percentage points). The differences between the patient groups varied by country, with Belgium showing most group differences (eight out of nine indicators) and Spain the fewest (two out of nine indicators). CONCLUSION: People who died of organ failure are at risk of receiving lower quality palliative care than people who died of cancer, but the differences vary per country. Initiatives to improve palliative care should have different priorities depending on the healthcare and cultural context.

Live music intervention for cancer inpatients: The Music Givers format.

ABSTRACTObjective:The present study intended to evaluate the impact of a standardized format-called the "Music Givers," based on a single session of music intervention followed by a buffet-on the psychological burden and well-being of hospitalized cancer patients. METHOD: The Distress Thermometer (DT), the Hospital Anxiety and Depression Scale (HADS), and self-reported visual analogue scales (score range = 1-10) to assess pain, fatigue, and five areas of well-being (i.e., physical, psychological, relational, spiritual, and overall well-being) were administered to 242 cancer patients upon admission to and at discharge from the hospital. Among them, 103 were hospitalized during which time a live concert took place (intervention group), whereas 139 patients were hospitalized when it did not (control group). RESULTS: Compared to the control group, patients in the intervention group demonstrated less distress at discharge according to the DT (adjusted estimate of difference = -0.8, p = 0.001), lower HADS-Anxiety (-1.7, p < 0.001) and HADS-Depression scores (-1.3, p = 0.001), and higher scores on all the well-being scales, with the exception of spiritual well-being. In addition, no between-group differences were found in terms of pain and fatigue scores at discharge. SIGNIFICANCE OF RESULTS: The one-session format of the Music Givers intervention is an effective, standardized, easy-to-replicate, and low-cost intervention that reduces psychological burden and improves the well-being of hospitalized cancer patients. Listening to live music and the opportunity to establish better relationships between patients and staff could explain these results.

Final transitions to place of death: patients and families wishes.

Purpose: This four-country study (Belgium, the Netherlands, Italy and Spain) examines prevalence and types of final transitions between care settings of cancer patients and the extent to which patient/family wishes are cited as a reason for the transition. Methods: Data were collected from the EUROSENTI-MELC study over a 2-year period. General practitioners within existing Sentinel Networks registered weekly all deaths of patients within practices using a standardized questionnaire. This registration included place of care in the final 3 months and wishes for the final transition to place of death. All non-sudden deaths due to cancer (+18 years) were included in the analyses. Results: We included 2048 non-sudden cancer deaths; 63% of patients had at least one transition between care settings in the final 3 months of life. 'Hospital death from home' (25-55%) and 'home death from hospital' (16-30%) were the most frequent types of final transitions in all countries. Patients' or families' wishes were mentioned as a reason for a final transition in 5-27% (P < 0.001) and 10-22% (P = 0.002) across countries. Conclusions: 'Hospital deaths from home' is the most prevalent final transition in three of four countries studied, in a significant minority of cases because of patient/family wishes.