Health-Related Quality of Life in Danish Cancer Survivors Referred to a Late Effects Clinic: A Prospective Cohort Study.

PURPOSE: The Region of Southern Denmark has recently established four late effects clinics to help cancer survivors suffering from complex and severe late effects. This study aimed to capture and analyze the full range of physical, mental, and psychosocial issues using patient-reported outcomes. Moreover, we aimed to describe demographic data and the type and severity of the late effects. METHODS: A prospective cohort study was conducted among cancer survivors referred to a late effects clinic. Before their first appointment, patients completed the European Organization for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire (EORTC QLQ-SURV100). We compared mean scores of the EORTC QLQ-SURV100 scales that were comparable to the scales/items from the EORTC QLQ-C30 questionnaire with norm data for the Danish population and EORTC reference values. RESULTS: All patients referred to the clinic within its first 2 years were included (n = 247). The mean age was 57 [23-85] years and 74% were females. The most common cancer diagnoses was breast cancer (39%). The five most commonly reported late effects were fatigue (66%), pain (51%), cognitive impairment (53%), sleep problems (42%), and neuropathy (40%). A total of 236 of the patients entering the clinic completed QLQ-SURV100. They reported significantly worse mean scores on all scales compared to the Danish norm population and EORTC reference values for pretreatment cancer patients, p < 0.001. Effect sizes were moderate or large for all scales. INTERPRETATION: In this study, we collected demographic data and described the late effects presented by the patents referred to the clinic. Moreover, we captured and analyzed the full range of physical, mental, and psychosocial issues using QLQ-SURV100. Patients referred to the Late Effects Clinic (LEC) had a number of late effects and reported a significantly lower health-related quality of life compared to the general Danish population and patients who have just been diagnosed with cancer, suggesting the aim of helping patients suffering from late effects gain a better quality of life is in dire need.

People affected by cancer and their carers from gender and sexually diverse communities: their experiences and the role of smartphone applications.

BACKGROUND: People living with cancer, or carers who are from lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities experience unique information and support needs. Accessible technology-based resources providing tailored support are required to promote wellbeing, however this is a growing area of research requiring further investigation. The purpose of this study was to explore the experiences of healthcare services among people living with cancer, and their carers, who belong to sexual or gender diverse communities (LGBTQIA+), and identify how smartphone applications (apps) could support people from LGBTQIA + communities. METHODS: This was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes. RESULTS: 13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified. CONCLUSION: Disclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants' experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.

Communicating without a Shared Language: A Qualitative Study of Language Barriers in Language-Discordant Cancer Communication.

We use language to achieve understanding, and language barriers can have major health consequences for patients with serious illness. While ethnic minorities are more likely to experience social inequalities in health and health care, communicative processes in language-discordant cancer care remain unexplored. This study aimed to investigate communication between patients with cancer and limited Danish proficiency and oncology clinicians, with special emphasis on how linguistic barriers influenced patient involvement and decision-making. 18 participant observations of clinical encounters were conducted. Field notes and transcriptions of audio recordings were analyzed, and three themes were identified: Miscommunication and uncertainty as a basic linguistic condition; Impact of time on patient involvement; Unequally divided roles and (mis)communication responsibilities. The results showed that professional interpreting could not eradicate miscommunication but was crucial for achieving understanding. Organizational factors related to time and professional interpreting limited patient involvement. Without professional interpreting, patients' relatives were assigned massive communication responsibilities. When no Danish-speaking relatives partook, clinicians' ethical dilemmas further increased as did patient safety risks. Language barriers have consequences for everyone who engages in health communication, and the generated knowledge about how linguistic inequality manifests itself in clinical practice can be used to reduce social inequalities in health and health care.

Healthcare interventions for older people with dementia and family caregivers in Europe: A scoping review.

AIM: This study aimed to examine the extent, range and variety of research in Europe describing healthcare interventions for older people with dementia (PwD) and family caregivers. METHODS: This was a scoping review and followed the PRISMA Scoping Review guideline. MEDLINE, CINAHL and Cochrane library databases were searched for studies published between 2010 and 2020. Studies reporting healthcare interventions in Europe for PwD over 65 years and their family caregivers were included. RESULTS: Twenty-one studies from six European countries were included. The types of healthcare intervention identified were categorized as follows: (1) family unit intervention (interventions for both PwD and their family caregiver), (2) individual intervention (separate interventions for PwD or family caregivers) and (3) family caregiver only intervention (interventions for family caregivers only but with outcomes for both PwD and family caregivers). CONCLUSIONS: This review provides insight into healthcare interventions for older PwD and family caregivers in Europe. More studies are needed that focus on the family as a unit of care in dementia.

The Danish landscape of providing support for caregivers of people with potentially life-threatening disease: A cross-sectional study among representatives of health services in Danish municipalities and hospitals.

AIMS: (a) To investigate support for caregivers of people diagnosed with stroke, cancer, chronic obstructive pulmonary disease (COPD), dementia, or heart disease provided across healthcare settings in Denmark; (b) to assess differences in caregiver support across diagnoses and settings. METHODS: A cross-sectional nationwide survey among professionals representing healthcare settings at municipalities (n = 479) and hospital wards and outpatient clinics (n = 425). The survey assessed identification of caregivers and support initiatives. RESULTS: The response rate was 81% for municipalities and 49% for hospitals. Identification of caregivers was frequent in dementia care (81% and 100%) and less frequent in COPD care (58% and 64%) in municipalities and hospitals, respectively. Caregiver support differed significantly across diagnoses within municipalities (p = 0.009) and hospitals (p < 0.001). Systematic identification of vulnerable caregivers was <25% for all diagnoses except dementia. The most common support initiatives involving caregivers were primarily aimed at the ill person and included guidance about the disease and consequences for everyday life and lifestyle changes. Caregivers were least involved in support initiatives addressing physical training, work retention, sexuality, or cohabitation. CONCLUSIONS: Disparities and significant differences across diagnoses exist in the identification of caregivers and the provision of support initiatives. Support initiatives involving caregivers primarily targeted patients. Future studies should investigate how caregivers' needs can be met across different diagnoses and healthcare settings and investigate potential changes in caregivers' needs during disease trajectories. In clinical practice, identification of vulnerable caregivers should be a major focus, and disease-specific clinical guidelines may be required to ensure sufficient support for caregivers.

Protective Buffering: Nurses Facilitating Communication Between Adults With Cancer and Their Adult Family Caregivers Who Overprotect One Another-An Integrative Review.

The aim of this study was to explore how nurses can alleviate protective buffering between adult patients with cancer and their adult family caregivers (PROSPERO No. CRD42020207072). An integrative review was conducted. PubMed, CINAHL, Embase, and Cochrane Library were searched for primary research articles published between January 2010 and April 2022. Only research conducted in oncology, hematology, or multiple settings and investigating communication between adult patients with cancer and their adult family caregivers and/or the communication between patients, family caregivers, and nurses was included. The constant comparison method outlined the approach to the analysis and synthesis of the included studies. Titles and abstracts of 7,073 references were screened; 22 articles (19 qualitative and three quantitative studies) were included in the review. Three themes emerged during data analysis: (a) family coping, (b) an isolating journey, and (c) the nurse's role. A study limitation was that "protective buffering" is not a common term in the nursing literature. There is a need for further research on protective buffering in families with cancer, particularly on psychosocial interventions that focus on the whole family across various cancer types.

Evaluation of a multimodal rehabilitative palliative care programme for patients with high-grade glioma and their family caregivers.

BACKGROUND: Patients diagnosed with high-grade glioma and their family caregivers often experience intense disease and treatment trajectories. Fluctuations in patient's symptoms lead to enormous burdens for caregivers and the risk of developing symptoms of stress, anxiety, and depression. AIM: The study aim is to explore patient and caregiver experiences and evaluate the relevance of and satisfaction with a multimodal rehabilitative palliative care programme for patients diagnosed with a high-grade glioma and their family caregivers. METHODS: In a longitudinal multi-methods study, adult patients with high-grade glioma (n = 17) and their family caregivers (n = 16) completed a 4-day residential programme and a 2-day follow-up programme 3 months later. Participants completed questionnaires after each programme, scoring relevance and satisfaction on a 5-point Likert scale. Qualitative data were collected during four evaluation group interviews with patients and caregivers. RESULTS: The mean overall satisfaction score was 4.80 (standard deviation [SD], 0.55) for the initial 4-day programme and 4.28 (SD, 0.83) for the follow-up programme. Three themes emerged in the evaluation group interviews: (1) meeting peers strengthens social well-being, (2) the value of information and focusing on individual needs, and (3) accepting life as an unpredictable passage. CONCLUSION: Participants found completing the REHPA-HGG programme feasible and rated all sessions highly for relevance and satisfaction. Qualitative findings confirm the value of individualised information, acceptance, and peer interactions. IMPLICATION FOR PRACTICE: A multimodal rehabilitative palliative care programme addressed unmet patient and caregiver needs. Peer-to-peer interventions for family caregivers may address individual support needs. Similar programmes may maximise benefit by avoiding planned behaviour changes and enhancing palliative approaches.

Healthcare practices and interventions in Europe towards families of older patients with cardiovascular disease: A scoping review.

BACKGROUND: In Europe, cardiovascular disease is one of the predominant causes of mortality and morbidity among older people over 65 years. The occurrence of cardiovascular disease can have a negative impact on the quality of life of older patients and their families and family health overall. Assuming that illness is a family affair shaped by culture and health care systems, we explored European health care practices and interventions toward families of older patients with cardiovascular disease and heart failure. AIMS: This paper aimed to determine the extent, range, and variety of practices and interventions in Europe directed to families of older patients and to identify knowledge gaps. MATERIALS & METHODS: A scoping review was conducted including studies published in Medline, CINHAL, or Cochrane library between 2009 and mid-2020. RESULTS: A total of 22 articles from 17 studies were included, showing diverse practices and interventions. The interventions targeted the family as a unit (six studies), dyads (five studies), patients alone, but assessed family members' reactions (five studies) or the family member primarily, but assessed the reaction of the patient (one study). Target outcomes were family caregiver burden; health-related QoL; and perceived control in patients; and family functioning and changes in health behavior or knowledge in both, family members and patients. Most studies did not include an integral view of the family as the unit of care but rather had a disease-centered approach. DISCUSSION: This scoping review provides insight into a variety of healthcare practices towards families of older patients with cardiovascular disease in Europe. Clarifying underlying assumptions to involve families is needed. More studies with family-focused approaches as integral models could lead to practices that improve families' well-being. Exploring integral models for their acceptance in health care and family systems appears pertinent to develop European policy to support and add to family health.

Patient, Family Caregiver, and Nurse Involvement in End-of-Life Discussions During Palliative Chemotherapy: A Phenomenological Hermeneutic Study.

The aim of this study was to investigate current nursing practice related to end-of-life discussions with incurable lung cancer patients and their family caregivers from the perspectives of patients, family caregivers, and nurses in an oncology outpatient clinic. This phenomenological hermeneutic study included nine patients, eight family caregivers, and 11 nurses. Data were collected using participant observation, informal and semi-structured individual or joint interviews with patients and family caregivers, and focus group interviews with nurses. A Ricoeur-inspired approach was used to analyze the data. Three themes were identified: (a) content of end-of-life discussions, (b) timing of end-of-life discussions, and (c) challenges in end-of-life discussions. End-of-life discussions were seldom initiated; when they were, it was often too late. Discussions addressed treatment, place of care, practical/economic concerns, and existential matters. The physical environment at the outpatient clinic, lack of continuity, and nurses' instrumental task workloads and time pressure posed challenges to initiating end-of-life discussions.

Health practices in Europe towards families of older patients with cancer: a scoping review.

INTRODUCTION: In Europe, cancer is one of the predominant causes of mortality and morbidity among older people aged over 65. A diagnosis of cancer can imply a negative impact on the quality of life of the older patients and their families. Despite research examining the impact of cancer on the family, it is unclear what kind of information is available about the types of clinical practice towards older patients with cancer and their families. The aim is to determine the extent, range and variety of research in Europe describing health practices towards families of older patients with cancer and to identify any existing gaps in knowledge. METHODS: Scoping review. RESULTS: A total of 12 articles were included, showing that family interventions are generally based on end-of-life care. Most studies used a qualitative approach and involved different types of family member as participants. Most studies were conducted in the UK. CONCLUSIONS: Review findings revealed limited knowledge about health practices in Europe towards families with an older patient with cancer. This review indicates a need to increase family-focused research that examines health practices that meet the needs of families of older patients with cancer. Seeing cancer as a chronic disease, there is an urgent need for the implementation of family-focused interventions.

Rationale and design of a randomised controlled trial investigating the effect of multidisciplinary nutritional rehabilitation for patients treated for head and neck cancer (the NUTRI-HAB trial).

BACKGROUND: Eating problems frequently affect quality of life and physical, psychological and social function in patients treated for head and neck cancer (HNC). Residential rehabilitation programmes may ameliorate these adverse effects but are not indicated for all individuals. Systematic assessment of rehabilitation needs may optimise the use of resources while ensuring referral to rehabilitation for those in need. Yet, evidence lacks on which nutrition screening and assessment tools to use. The trial objectives are: 1) To test the effect of a multidisciplinary residential nutritional rehabilitation programme compared to standard care on the primary outcome body weight and secondary outcomes health-related quality of life, physical function and symptoms of anxiety and depression in patients curatively treated for HNC and 2) To test for correlations between participants' development in outcome scores during their participation in the programme and their baseline scores in Nutritional Risk Screening 2002 (NRS 2002), the Scored Patient-Generated Subjective Global Assessment Short Form (PG-SGA SF), and M. D. Anderson Dysphagia Inventory (MDADI) and to assess sensitivity, specificity and predictive values of the three tools in relation to a clinically relevant improvement in outcome scores. METHODS: In a randomised controlled trial, 72 patients treated for HNC recruited through a nationwide survey will be randomised to a multidisciplinary residential nutritional rehabilitation programme or to a wait-list control group. Data are collected at baseline, three and six months. Primary outcome is change in body weight, and secondary outcomes include changes in quality of life, physical function and symptoms of anxiety and depression. Potential correlations between intervention effect and baseline scores in NRS 2002, PG-SGA-SF and MDADI will be tested, and sensitivity, specificity and predictive values of the three tools in relation to a clinically relevant improvement in outcome scores will be assessed. DISCUSSION: This is the first randomised controlled trial to test the effect of a multidisciplinary residential nutritional rehabilitation programme in patients treated for HNC. Recruitment through a nationwide survey gives a unique possibility to describe the trial population and to identify potential selection bias. As the trial will explore the potential of different nutrition screening and assessment tools in the assessment of rehabilitation needs in patients treated for HNC, the trial will create knowledge about how selection and prioritisation of nutritional rehabilitation aimed at patients treated for HNC should be offered. The results may contribute to a better organisation and use of existing resources in benefit of patients treated for HNC. TRIAL REGISTRATION: The trial is registered by The Danish Data Protection Agency (registration 2012-58-0018, approval number 18/14847) and the Regional Committees on Health Research Ethics for Southern Denmark (journal number 20182000-165). ClinicalTrials.gov Identifier: NCT03909256. Registered April 9, 2019.

Patient-Reported Outcomes During Immunotherapy for Metastatic Melanoma: Mixed Methods Study of Patients' and Clinicians' Experiences.

BACKGROUND: The benefits of electronic patient reported outcomes (PRO) questionnaires have been demonstrated in many settings, including in hospitals and patient homes. However, it remains to be investigated how melanoma patients and their treating clinicians experience the electronic self-reporting of side effects and the derived communication. OBJECTIVE: The primary objective of this study was to examine patients' and clinicians' experiences with an eHealth intervention for weekly monitoring of side effects during treatment with immunotherapy. METHODS: An eHealth intervention based on questions from the PRO-Common Terminology Criteria for Adverse Events (CTCAE) library was used and tested in a randomized clinical trial with patients receiving immunotherapy for malignant melanoma and clinicians at a university hospital in Denmark. On a weekly basis, patients reported their symptoms from home during the treatment via a provided tablet. The electronic patient reports were available to clinicians in the outpatient clinic. A mixed methods approach was applied to investigate the patients' and clinicians' experiences with the intervention. Data from patient experiences were collected in a short survey, the Patient Feedback Form. Moreover, a subset of the patients participating in the survey was interviewed about their experience. Furthermore, one focus group interview with clinicians was carried out to elucidate their views. RESULTS: A total of 57 patients completed the Patient Feedback Form, and 14 patients were interviewed. The focus group interview included 5 clinicians. Overall, patients and clinicians were satisfied with the tool. They believed it enhanced patients' awareness of side effects and increased their feeling of involvement. The patients reported that it was easy to fill out the questionnaire and that it made sense to do so. However, a minority of the patients expressed in the interviews that they did not believe that the health care professionals had seen their reports when they came to the clinic, and that the reporting did not lead to increased contact with the department. CONCLUSIONS: Overall, satisfaction with the eHealth intervention was high among patients and their treating clinicians. The tool was easy to use and contributed to greater symptom awareness and patient involvement. Thus, in terms of patient and clinician satisfaction with the tool, it makes sense to continue using the tool beyond the project period. TRIAL REGISTRATION: ClinicalTrials.gov NCT03073031; https://tinyurl.com/tjx3gtu.

Nurses' attitudes regarding the importance of families in nursing care: A cross-sectional study.

AIMS AND OBJECTIVES: To investigate attitudes towards family involvement in care among a broad sample of Danish nurses from all sectors and healthcare settings. BACKGROUND: Evidence suggests that nurses hold both supportive and less supportive attitudes about involvement of family members in the care of patients, and the existing findings are limited to specific healthcare contexts. DESIGN: A cross-sectional study adhering to the Strengthening the Reporting of Observational Studies in Epidemiology for reporting observational studies. METHODS: Using snowball sampling, the Families' Importance in Nursing Care-Nurses' Attitudes questionnaire was initially administered to a broad, convenience sample of Danish registered nurses through social media: Facebook interest groups and the homepage of the Danish Family Nursing Association. These nurses were encouraged to send the invitation to participate in their network of nursing colleagues. Complete data sets from 1,720 nurses were available for analysis. RESULTS: In general, the nurses considered the family as important in patient care. Nurses who held master's and doctorate degrees scored significantly higher than nurses with a basic nursing education. Nurses who had had experience with illness within their own families tended to score higher on the family as a conversational partner subscale than those without this experience. Nurses with the longest engagement within hospital settings scored significantly lower than those with the longest engagement within primary health care and/or psychiatry. CONCLUSIONS: Families are considered important in nursing care. Younger nurses with a basic education, short-term engagement at a hospital and no experiences with illness within their own families were predictors of less supportive attitudes towards including the family in nursing care. RELEVANCE TO CLINICAL PRACTICE: Clinical leaders and managers should promote education on the importance of active family involvement in patient care in clinical practice and undergraduate education. More focus on collaboration with families in the hospital setting is needed.

District nurses' views on and experiences with a telemedicine educational programme in palliative care.

BACKGROUND: Medical advancements, limited resources and shifting demographics have increased the number of patients with palliative care needs in primary care. To address educational needs, the specialised palliative care team of South Jutland, Denmark, created a telemedicine educational programme in palliative care to empower district nurses. AIM: The study aimed to explore district nurses' views on and experiences with a telemedicine educational programme in palliative care. RESEARCH METHODS: A qualitative explorative study based on interpretive description was conducted. Data collection consisted of four focus group interviews with district nurses from three municipalities, supplemented by participant observations and a focus group interview with teachers from the specialised palliative care team. Data were analysed using predominately inductive thematic analysis. RESULTS: District nurses (n = 15) who participated in the programme and members of the specialised palliative care team (n = 6) who taught the programme were included. Analysis revealed the following advantages: reaffirming and updating existing knowledge, reduced professional isolation and creation of a forum to promote knowledge dissemination. A disadvantage was limited interaction between teachers and district nurses, questioning suitability for teaching complex palliative care. Initial technical problems affected motivation to participate. Organisational support differed between participating municipalities resulting in varying degrees of programme integration. Despite advantages of IT-expert-led sessions, key-nurse-led sessions in smaller groups proved more beneficial, suggesting a combination of IT support and key-nurse management to maximise benefits. CONCLUSION: The use of an inter-professional telemedicine educational programme to teach palliative care to district nurses is beneficial. However, programmes should be designed for interactivity and address varying educational needs. Key-nurse roles require managerial and IT support to optimise knowledge dissemination. Further research on implementation of telemedicine education in palliative care is needed.

Video consultations in palliative care: A systematic integrative review.

BACKGROUND: There is extensive need for palliative care worldwide, but access to care remains inadequate, especially for non-cancer patients. Video consultations are a promising tool in the provision of home-based palliative care, but an overview of evidence solely on video consultations in palliative care is lacking. AIM: To review and synthesize current evidence regarding the use of video consultations in general and specialized palliative care to various patient groups. DESIGN: A systematic integrative review with a narrative synthesis was undertaken in accordance with PRISMA (2009) guidelines. PROSPERO #: CRD42018095383. DATA SOURCES: PubMed, Embase, CINAHL, and PsychINFO were searched for primary research articles published between 2005 and 2018. In addition, reference lists of included articles were hand searched. RESULTS: The search resulted in 813 articles; 39 articles were included in the review, consisting of mixed methods (n = 14), qualitative (n = 10), quantitative (n = 10), and case studies (n = 5). The studies mainly focused on specialized palliative care to adult patients with cancer in high income countries. Through data analysis, six themes addressing advantages/disadvantages and facilitators/barriers were identified: (1) Redesign of care, (2) Communication, (3) User perceptions, (4) Technology, (5) Privacy issues, and (6) Economic implications. CONCLUSION: Using video technology in palliative care has both advantages and disadvantages. However, evidence beyond the focus on specialized palliative care and patients with cancer is limited. Future research should focus on how and when video consultations might replace in-person specialized palliative care and video consultations in general palliative care, in low and middle income countries; and involve patients with a non-cancer diagnosis.

Telemedicine in specialised palliative care: Healthcare professionals' and their perspectives on video consultations-A qualitative study.

AIMS AND OBJECTIVES: To explore the advantages and disadvantages of using video consultations, as experienced by specialised palliative care healthcare professionals, who are involved in palliative care at home. BACKGROUND: One challenge in the work of specialised palliative care teams is the substantial resources used in terms of time and transport to and from the patient's home. Video consultations may be a solution for real-time specialised palliative home care. DESIGNS: Hermeneutic, postphenomenology. METHODS: An explorative qualitative study utilising data from field notes of an autobiographical diary, participant observations and semi-structured interviews with healthcare professionals. The COREQ guideline was used for reporting the study. See Appendix S1. The data collection took place in patients' homes and at the Department of Oncology, Odense University Hospital, Denmark. RESULTS: Eight participants (n = 8); five community nurses; and three specialised palliative care team members-a head physician, a physiotherapist and a nurse-participated in the study. The healthcare professionals' knowledge was based on n = 82 video consultations with 11 patients. The range of video consultations was 3-18 per patient. The use of tablets in video consultations facilitated direct palliative care and led the community nurses and the specialised palliative care team nurse to co-operate. Potential barriers against using video consultations are the discussions about personal, and private issues regarding the illness, while family members are present. CONCLUSIONS: Video consultations in specialised palliative home care are feasible, and the technology can facilitate multidisciplinary participation and co-operation among healthcare professionals. The continuous use of video consultations over time may increase the quality of specialised palliative home care. RELEVANCE TO CLINICAL PRACTICE: The use of video consultations can provide direct specialised palliative care over distance involving healthcare professionals, patients and their relatives.

Danish translation, cultural adaption and initial psychometric evaluation of the patient feedback form.

AIM: No suitable Danish questionnaire exists to evaluate patient satisfaction with various patient reported outcome measures. Thus, the aim of this research project was to conduct a study on the translation and cultural adaption of an American patient reported experience measures questionnaire, "Patient Feedback Form", among Danish patients, and to examine selected psychometric properties within reliability. MATERIAL AND METHODS: In the first phase of the study, the Patient Feedback Form was forward and backward translated following the methodology of existing guidelines. Subsequently, cognitive interviewing was performed with seven cancer patients and seven healthy persons (19-86 years old/6 men and 8 women) to ensure that questions were easy to understand and made sense to Danish interviewees. In the second phase, phone interviews were carried out with 95 prostate cancer patients after they had responded to the same Patient Feedback Form. Missing data was imputed using the Expectation-Maximization technique. To examine the structure of the questionnaire, an exploratory factor analysis was conducted. Cronbach's alpha was calculated to investigate internal consistency. RESULTS: There were only minor disagreements in the translation process, and the reconciliation went smoothly (phase 1). With regard to one item, however, it was difficult to reach a consensus. Through the qualitative validation process, the right solution was found. The results from the psychometric testing (phase 2) showed that four factors had an Eigen value > 1, but only one factor was extracted as the Scree plot had a clear "elbow", showing a one factor structure that explained 46.1% of the variance. The internal consistency was high as Cronbach's alpha was 0.89. CONCLUSION: The translated, culturally adapted, and validated version of the Patient Feedback Form seems to be suitable for measuring satisfaction with patient reported outcome measures in a Danish setting. While the results should be treated with caution due to the small sample size, psychometric testing indicates that the questionnaire is a valid instrument. However, additional psychometric testing such as hypotheses testing, responsiveness, and test-retest on a larger and more diverse sample size is required to further verify the validity of the instrument.

Family functioning and perceived support from nurses during cancer treatment among Danish and Australian patients and their families.

AIMS AND OBJECTIVES: This study aimed to compare family functioning and perceptions of support from nurses among Danish and Australian adult oncology patients and family members. BACKGROUND: Family can have a strong influence on the health of individuals, providing support during a health crisis such as cancer. However, family functioning and supportive care from nurses may vary across cultures and settings. DESIGN AND METHODS: A descriptive, cross-sectional comparative design with patients and family members from Denmark and Australia. Participants were asked to fill in translated versions of the Iceland-Expressive Family Functioning Questionnaire (ICE-EFFQ) and Iceland-Expressive Family Perceived Support Questionnaire (ICE-FPSQ). RESULTS: In total, 232 participants were recruited. The Danish cohort consisted of 56 patients and 54 family members. The Australian cohort consisted of 83 patients and 39 family members. Mean age was 59 years. No significant differences were found between Danish and Australian families. However, compared to patients, family members reported significantly lower overall family functioning, expressive emotions and communication, as well as less emotional support from nurses. CONCLUSIONS: Family functioning was comparable between Denmark and Australia. Family members reported less emotional support than patients. Nurses need to consider the patient and the family as a unit with complex needs that require monitoring and attention during oncology treatment. IMPLICATIONS FOR PRACTICE: Families supporting a member with cancer have significant and often unmet needs. Assessment, information-sharing and health education need to include the family. Supportive care information may be shared between Denmark and Australia and inspires the development of common guidelines for optimal family nursing practice.

Male coping through a long-term cancer trajectory. Secondary outcomes from a RTC examining the effect of a multidisciplinary rehabilitation program (RePCa) among radiated men with prostate cancer.

BACKGROUND: The objective of this study was to examine if rehabilitation influenced self-reported male coping styles during and up to three years after treatment with radiotherapy for prostate cancer. MATERIALS AND METHODS: In a single-center oncology unit in Odense, Denmark, 161 prostate cancer patients treated with radiotherapy and androgen deprivation therapy were included in a randomized controlled trial from 2010 to 2012. The trial examined the effect of a multidisciplinary rehabilitation program within six months of treatment consisting of two nursing counseling sessions and two instructive sessions with a physical therapist (n = 79), or standard care (n = 82). As secondary outcomes coping was measured before radiotherapy, one month after radiotherapy (baseline), six month post-intervention (assessment) and three years after radiotherapy (follow-up) by the Mini-mental adjustment to cancer scale (Mini-MAC). The male coping styles towards the illness are expressed in five mental adjustment styles: Fighting Spirit, Helplessness-Hopelessness, Anxious Preoccupation, Fatalism and Cognitive Avoidance. Descriptive analysis and multiple linear regression analysis adjusting for the longitudinal design were conducted. RESULTS: Most coping styles remained stable during the patient trajectory but Anxious Preoccupation declined from before radiotherapy to follow-up in both intervention and control groups. After six months the intervention group retained Fighting Spirit significantly (p = 0.025) compared with controls, but after three years this difference evened out. After three years the intervention group had lower Cognitive Avoidance (p = 0.044) than the controls. Factors as educational level, and depression influenced the use of coping styles after three years. CONCLUSION: Multidisciplinary rehabilitation in irradiated prostate cancer patients retained the adjustment style Fighting Spirit stable after six months of radiotherapy, and in the long term reduced Cognitive Avoidance. Thus, the rehabilitation program supported the patient's active coping style and played down the passive coping style.