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.

A NEw MOdel of individualized and patient-centered follow-up for women with gynecological cancer (the NEMO study)-protocol and rationale of a randomized clinical trial.

Background: Follow-up programs for gynecological cancer patients are currently under revision. There is limited evidence that traditional follow-up and clinical examinations improve survival in an early-stage gynecological setting. Further, traditional follow-up programs fail to accommodate the patient's need for psychosocial and sexual supportive care and to actively involve patients and their relatives in the follow-up process.

Barriers for Participation in the Danish Colorectal Cancer Screening Program: a Qualitative Study.

Purpose: The participation rate in the Danish National Screening Program for Colorectal Cancer is around 60%. Since early detection of cancer through the colorectal cancer screening program (CRCS) reduces mortality rates, it is important to understand why people do not participate. The aim of this study was therefore to examine in depth why some people do not participate in the Danish CRCS program.

Development of an advance directive 'communication tool' relevant for patients with advanced cancer in six European countries: Experiences from the ACTION trial.

Background: The ACTION trial evaluated the effect of a modified version of the Respecting Choices´ advance care planning programme in patients with advanced cancer in six European countries. For this purpose, an advance directive acceptable for all six ACTION countries to be used for documenting the wishes and preferences of patients and as a communication tool between patients, their caregivers and healthcare staff, was needed.

Aim: To describe the development of a multinational cancer specific advance directive, the ´My Preferences form´, which was first based on the 2005 Wisconsin 'Physician Orders of Life Sustaining Treatment´ Form, to be used within the ACTION trial.

Sexual health and closeness in couples coping with advanced cancer: Results of a multicenter observational study (eQuiPe).

Background: Cancer and its treatment can severely affect sexual health. It is unknown how this may relate to the feelings of closeness between patients and their partners.

Aim: To assess the association between sexual health and closeness in the relationship in couples coping with advanced cancer.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

Background: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life.

Promoting health equity in the health-care system: How can we identify potentially vulnerable patients?

Background: There is documented social inequality in cancer. The health-care system may contribute to health equity by targeting interventions to potentially vulnerable patients who may be at risk of not receiving optimal treatment and care.

Aim: This study aimed to develop and pilot test a tool to identify patients who may need additional support.

Perceptions of person-centred care in two large university hospitals: A cross-sectional survey among healthcare professionals.

Background: Patient-centred care (PCC) including collaborative practices is the core component of modern health care. Despite this, it has proven difficult to implement.

Aims: To examine (1) healthcare professionals' (HCPs') perception of whether they perceive a PCC culture, their attitudes towards involving patients in decisions and their experiences of barriers for PCC; and (2) variables that may contribute to explain differences in perceived person-centred culture.

Crossing borders: a systematic review identifying potential mechanisms of intergenerational trauma transmission in asylum-seeking and refugee families.

As displacement and forced migration continue to exhibit global growth trends, new and surviving generations of children are being born and spending their formative years in host countries. Refugee children who have not been exposed to traumatic events may still be at risk for adverse developmental and mental health outcomes via intergenerational trauma transmission. To identify and synthesize potential mechanisms of intergenerational trauma transmission in forcibly displaced families where parents have experienced direct war-related trauma exposure, but children have no history of direct trauma exposure.

Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up.

Purpose: The aim of this study was to develop and ensure the content validity of a new patient-reported outcome measure, the Cancer Patient Empowerment Questionnaire (CPEQ), to measure the level of, desire for, and enablement of empowerment among cancer patients in follow-up.

Methods: An iterative process based on: (i) empowerment theories by Zimmerman and Tengland, (ii) a systematic review of questionnaires measuring empowerment or related concepts among cancer patients, (iii) qualitative data from 18 semi-structured interviews with Danish cancer patients in follow-up, (iv) input from a group of eight cancer patients involved as co-researchers and from an expert steering group, and (v) cognitive interviews with 15 cancer patients in follow-up.

Results: The items for the CPEQ were developed and revised and 12 versions of the questionnaire were evaluated.

Early specialised palliative care: interventions, symptoms, problems.

Background: Few studies have investigated the content of interventions provided in early specialised palliative care (SPC).

Objectives: To characterise the content of interventions delivered in early SPC in the Danish Palliative Care Trial (DanPaCT), a multicentre trial with six participating sites.

Methods: A retrospective qualitative and quantitative study coding all new interventions initiated by the palliative teams and documented in the medical records during the 8-week study period of DanPaCT.

There's Nothing Broken. You've Had a Whiplash, That's It: A Qualitative Study of Comorbid Posttraumatic Stress Disorder and Whiplash Associated Disorders.

Background: Posttraumatic stress disorder (PTSD) symptoms are common in chronic Whiplash associated disorders (WAD) and have been found to be associated with higher levels of pain and disability. Theoretical frameworks have suggested that PTSD and pain not only coexist, but also mutually maintain one another. Although the comorbidity has been subject to increasing quantitative research, patients' experiences of the comorbidity and symptom interaction remain largely uninvestigated using qualitative methods.

Exploratory analyses of the Danish Palliative Care Trial (DanPaCT): a randomized trial of early specialized palliative care plus standard care versus standard care in advanced cancer patients.

Background: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials.

Objective: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT).

Methods: We conducted a randomized multicentre, parallel-group clinical trial.

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.

Prevalence and possible predictors of sexual dysfunction and self-reported needs related to the sexual life of advanced cancer patients.

Sexual dysfunction and problems are common late effects after treatment of cancer. However, little is known about the prevalence and risk factors for sexual dysfunction in patients with advanced cancer. The aim of this study was to investigate the prevalence and predictors of sexual problems and needs in a large sample of Danish patients with advanced cancer.

User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice.

Background: This paper reports on the process of involving former and current cancer patients and carers as co-researchers in a Danish mixed methods research project on patient empowerment of cancer patients in follow up (The Empowerment study 2015-2019). User-Involvement in health care research is a relatively new practice in Denmark and the Empowerment project was one of the first to systematically involve patients and carers in its research design, conduct and reporting. The paper has two aims: first, it provides a detailed account of the process of involving co-researchers in the Empowerment project and second, it presents findings from a workshop held with academic researchers and co-researchers on the project to discuss their experiences and recommendations for user-involvement in the Danish context.

Nausea in advanced cancer: relationships between intensity, burden, and the need for help.

Purpose: This study aimed at expanding the knowledge of nausea in patients with advanced cancer by elucidating (a) the prevalences of patients having nausea, experiencing nausea as a problem, and having a need for help with their nausea, respectively, (b) determining variables associated with nausea, and (c) investigating the relation between nausea and the need for help regarding nausea.

Methods: In 2004-2006, the EORTC QLQ-C30 and the Three-Levels-of-Needs Questionnaire (3LNQ) were mailed to 2364 patients with advanced cancer who had been in contact with one of the 54 hospital departments within the past year. Further information was collected from medical records.

The 'Cancer Home-Life Intervention': A randomised controlled trial evaluating the efficacy of an occupational therapy-based intervention in people with advanced cancer.

Background: People with advanced cancer face difficulties with their everyday activities at home that may reduce their health-related quality of life. To address these difficulties, we developed the 'Cancer Home-Life Intervention'.

Aim: To evaluate the efficacy of the 'Cancer Home Life-Intervention' compared with usual care with regard to patients' performance of, and participation in, everyday activities, and their health-related quality of life.

The impact of using peer interviewers in a study of patient empowerment amongst people in cancer follow-up.

Background: A range of benefits have been reported from engaging peer interviewers in qualitative interviews, but little systematic evaluation exists to assess their impact on both process and outcomes of qualitative interviews in health research.

Objective: To investigate the impact of involving patient representatives as peer interviewers in a research project on patient empowerment.

Design: 18 interviews were carried out as part of the wider study, seven by the academic researcher alone and eleven jointly with a peer interviewer.

What Facilitates "Patient Empowerment" in Cancer Patients During Follow-Up: A Qualitative Systematic Review of the Literature.

Empowerment is a concept of growing importance in cancer care, but little is known about cancer patients' experiences of empowerment during follow-up. To explore this area, a qualitative systematic literature review was conducted in PubMed, CINAHL, and PsycINFO. A total of 2,292 papers were identified and 38 articles selected and included in the review.

Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial.

Background: Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal.

Aim: To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments.

Setting/participants: The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.

[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.

Conceptualizing patient empowerment in cancer follow-up by combining theory and qualitative data.

Background: Patient empowerment (PE) may be defined as the opportunity for patients to master issues important to their own health. The aim of this study was to conceptualize PE and how the concept manifests itself for cancer patients attending follow-up, in order to develop a relevant and sensitive questionnaire for this population.

Material And Methods: A theoretical model of PE was made, based on Zimmerman's theory of psychological empowerment.

Patient empowerment: a systematic review of questionnaires measuring empowerment in cancer patients.

Background: There is an increased attention to and demand for patient empowerment in cancer treatment and follow-up programs. Patient empowerment has been defined as feeling in control of or having mastery in relation to cancer and cancer care. This calls for properly developed questionnaires assessing empowerment from the user perspective.