European women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention: a qualitative study.

BACKGROUND: Increased knowledge of breast cancer risk factors has meant that we are currently exploring risk-based screening, i.e. determining screening strategies based on women's varying levels of risk. This also enables risk management through primary prevention strategies, e.g. a lifestyle programme or risk-reducing medication. However, future implementation of risk-based screening and prevention will warrant significant changes in current practice and policy. The present study explores women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention to optimise acceptability and uptake. METHODS: A total of 143 women eligible for breast cancer screening in the Netherlands, the United Kingdom, and Sweden participated in focus group discussions. The focus group discussions were transcribed verbatim and the qualitative data was analysed using thematic analysis. RESULTS: Women from all three countries generally agreed on the overall proceedings, e.g. a risk assessment after which the risk estimate is communicated via letter (for below average and average risk) or consultation (for moderate and high risk). However, discrepancies in information needs, preferred risk communication format and risk counselling professional were identified between countries. Additionally, a need to educate healthcare professionals on all aspects of the risk-based screening and prevention programme was established. CONCLUSION: Women's insights identified the need for country-specific standardised protocols regarding the assessment and communication of risk, and the provision of heterogeneous screening and prevention recommendations, monitoring the principle of solidarity in healthcare policy.

Sense of coherence and its relationship to participation, cancer-related fatigue, symptom burden, and quality of life in women with breast cancer participating in the OptiTrain exercise trial.

PURPOSE: This study examined the Sense of Coherence (SOC) of patients participating in the randomized controlled 'Optimal Training for Women with Breast Cancer' (OptiTrain) study and assessed how patient characteristics were associated with SOC. Secondary aims were to assess the association between SOC and patients' participation in this study and to determine whether SOC moderates the effect of the 16-week exercise intervention on fatigue, quality of life (QoL), and symptom burden in women with breast cancer undergoing chemotherapy. METHODS: Modified Poisson regression analyses were conducted to determine the relative risk of weak-normal SOC versus strong SOC in terms of exercise session attendance, study and intervention dropout, and long absence rates. Analyses of covariance were performed to assess whether SOC moderated the effect of the exercise intervention (pinteraction ≤ 0.10). RESULTS: Two hundred and forty women with early breast cancer (mean age 53 ± 10) participated in the OptiTrain study. Women with strong SOC reported less fatigue, lower symptom burden, and higher QoL. Women with weak-normal SOC were significantly more likely to drop out from the OptiTrain study and tended to have slightly poorer exercise session attendance. Women with breast cancer and weaker SOC benefitted as much from the exercise intervention, in terms of fatigue and QoL, as those with stronger SOC (pinteraction > 0.10). CONCLUSIONS: Strong SOC appears to be associated with a more positive subjective state of health. Women with weak-normal SOC may need additional support to encourage participation and adherence in exercise trials. Assessing SOC may assist clinicians to identify and provide extra support for participants with weak SOC, who may be less inclined to participate in exercise programs.

Long-Term Favorable Effects of Physical Exercise on Burdensome Symptoms in the OptiTrain Breast Cancer Randomized Controlled Trial.

Purpose: We evaluate longitudinal changes in symptom clusters and core burdensome symptoms in breast cancer patients who participated in the OptiTrain trial. Methods: 240 women were randomized to 16 weeks of supervised exercise (RT-HIIT or AT-HIIT) or usual care (UC) during adjuvant chemotherapy. Symptom clusters were composed using the Memorial Symptom Assessment Scale (MSAS), assessed at baseline, 16 weeks and 12 months later. Three symptom clusters were formed. Results: Three symptom clusters were identified: "emotional," "treatment-related toxicity," and "physical," with core burdensome symptoms present over time. At 16 weeks, the reported burdens of "feeling sad" (RT-HIIT vs UC: effect size [ES] = -0.69; AT-HIIT vs UC: ES = -0.56) and "feeling irritable" (ES = -0.41 RT-HIIT; ES = -0.31 AT-HIIT) were significantly lower in both intervention groups compared with UC. At 12 months, the AT-HIIT group continued to have significantly lower scores for the core burdensome symptoms "feeling sad" (ES = -0.44), "feeling irritable" (ES = -0.44), and "changes in the way food tastes" (ES = -0.53) compared with UC. No between-group differences were found for physical symptoms. Conclusion: We identified 3 symptom clusters in breast cancer patients during and after adjuvant chemotherapy, composed of "emotional," "treatment-related toxicity," and "physical" symptoms. After treatment completion up to 12 months post-baseline, patients in the physical exercise groups reported lower symptom burden scores for emotional symptoms, compared with UC. Our findings indicate a preserved and long-term beneficial effect of physical exercise on self-reported emotional well-being in chemotherapy-treated breast cancer patients.

Speaking Up for Fundamental Care: the ILC Aalborg Statement.

OBJECTIVE: The International Learning Collaborative (ILC) is an organisation dedicated to understanding why fundamental care, the care required by all patients regardless of clinical condition, fails to be provided in healthcare systems globally. At its 11th annual meeting in 2019, nursing leaders from 11 countries, together with patient representatives, confirmed that patients' fundamental care needs are still being ignored and nurses are still afraid to 'speak up' when these care failures occur. While the ILC's efforts over the past decade have led to increased recognition of the importance of fundamental care, it is not enough. To generate practical, sustainable solutions, we need to substantially rethink fundamental care and its contribution to patient outcomes and experiences, staff well-being, safety and quality, and the economic viability of healthcare systems. KEY ARGUMENTS: We present five propositions for radically transforming fundamental care delivery:Value: fundamental care must be foundational to all caring activities, systems and institutionsTalk: fundamental care must be explicitly articulated in all caring activities, systems and institutions.Do: fundamental care must be explicitly actioned and evaluated in all caring activities, systems and institutions.Own: fundamental care must be owned by each individual who delivers care, works in a system that is responsible for care or works in an institution whose mission is to deliver care. RESEARCH: fundamental care must undergo systematic and high-quality investigations to generate the evidence needed to inform care practices and shape health systems and education curricula. CONCLUSION: For radical transformation within health systems globally, we must move beyond nursing and ensure all members of the healthcare team-educators, students, consumers, clinicians, leaders, researchers, policy-makers and politicians-value, talk, do, own and research fundamental care. It is only through coordinated, collaborative effort that we will, and must, achieve real change.

Development and Feasibility of an Interactive Smartphone App for Early Assessment and Management of Symptoms Following Pancreaticoduodenectomy.

BACKGROUND: Patients who have undergone pancreaticoduodenectomy because of pancreatic cancer experience distressing symptoms and unmet supportive care needs after discharge. To meet these needs, we have developed a mobile health app (Interaktor) for daily assessment of symptoms and access to self-care advice that includes a risk assessment model for alerts with real-time interactions with professionals. OBJECTIVE: The study aim was to develop and test a version of the Interaktor app adapted for patients who have undergone pancreaticoduodenectomy. METHODS: The app was developed and tested for feasibility in 6 patients during 4 weeks. One nurse monitored and responded to alerts. Logged data from the app were collected, and all participants were interviewed about their experiences. RESULTS: Adherence to reporting daily was 84%. Alerts were generated in 41% of the reports. The patients felt reassured and cared for and received support for symptom management. The app was easy to use, had relevant content, and had few technical problems, although suggestions for improvement were given. CONCLUSIONS: The daily reporting of symptoms and having access to a nurse in real time in the case of an alarming symptom seem to enhance symptom management and render a feeling of security in patients. Some modifications of the app are needed before use in a larger sample. IMPLICATIONS FOR PRACTICE: Daily reporting of symptoms after pancreaticoduodenectomy enhances symptom management, self-care, and participation without being a burden to patients, indicating that mobile health can be used in clinical practice by patients with poor prognosis who experience severe symptoms.

A Standard Set of Value-Based Patient-Centered Outcomes for Breast Cancer: The International Consortium for Health Outcomes Measurement (ICHOM) Initiative.

A major challenge in value-based health care is the lack of standardized health outcomes measurements, hindering optimal monitoring and comparison of the quality of health care across different settings globally. The International Consortium for Health Outcomes Measurement (ICHOM) assembled a multidisciplinary international working group, comprised of 26 health care providers and patient advocates, to develop a standard set of value-based patient-centered outcomes for breast cancer (BC). The working group convened via 8 teleconferences and completed a follow-up survey after each meeting. A modified 2-round Delphi method was used to achieve consensus on the outcomes and case-mix variables to be included. Patient focus group meetings (8 early or metastatic BC patients) and online anonymized surveys of 1225 multinational BC patients and survivors were also conducted to obtain patients' input. The standard set encompasses survival and cancer control, and disutility of care (eg, acute treatment complications) outcomes, to be collected through administrative data and/or clinical records. A combination of multiple patient-reported outcomes measurement (PROM) tools is recommended to capture long-term degree of health outcomes. Selected case-mix factors were recommended to be collected at baseline. The ICHOM will endeavor to achieve wide buy-in of this set and facilitate its implementation in routine clinical practice in various settings and institutions worldwide.

Assessing patient outcomes and cost-effectiveness of nurse-led follow-up for women with breast cancer - have relevant and sensitive evaluation measures been used?

AIMS AND OBJECTIVES: To explore how interventions using nurse-led follow-up in breast cancer care have been evaluated with a focus on patient outcomes and cost-effectiveness. BACKGROUND: As part of the advancement of breast care, nurse-led follow-up is increasingly used as an alternative to routine hospital follow-up in outpatient clinics. There is evidence suggesting that patients appear to be satisfied with the nurse-led follow-up, but there is a lack of evidence of whether this perception equates to patients' satisfaction with the model of physician-led follow-up. DESIGN: Systematic review. METHOD: Three databases were searched, and 29 RCT were initially screened. Finally, 13 articles were critically appraised. Searches included articles between 2005-2013. The quality of appraisal assessment was inspired by the GRADE system. RESULTS: The results show that there are many different instruments used when evaluating nurse-led follow-up, which makes it difficult to compare the studies. Several of the studies used QoL as an outcome measure; this is a broad concept that includes several aspects ranging from social role and psychosocial issues to symptoms and therefore difficult to use as an outcome measure. Only two of the studies made any cost-effective analyses, and the results are hard to interpret. CONCLUSIONS: Nurse-led follow-up can potentially result in better continuity of care and the availability of more time to provide psychosocial support and address patients' information needs. However, more well-conducted research is needed before equivalence to physician-led follow-up can be assessed in terms of survival, recurrence, patient well-being and cost-effectiveness. RELEVANCE TO CLINICAL PRACTICE: Results from well-conducted evaluation studies of nurse-led services based on theory are needed so that relevant interventions can be implemented in clinical practice. There is a need to in future studies include cost-effectiveness analyses to compare nurse-led services with other types of follow-up.

Early assessment and identification of posttraumatic stress disorder, satisfaction with appearance and coping in patients with burns.

BACKGROUND: The first year after severe burn is a psychologically challenging period for the patient. Patients may still struggle with burn-related physical and psychological problems such as posttraumatic stress disorder (PTSD) and body image dissatisfaction (BID). AIM: This study investigates the presence of PTSD, BID and coping, at three, six and twelve months after discharge for early identification of patients in need of focused support during rehabilitation. METHODS: Fifty-two adult patients with different degrees of burns were followed at three, six and twelve months after discharge and 36 patients completed all assessment points. A standardized clinical protocol was used for systematic assessment of PTSD (IES-R), BID (SWAP-Swe) and Coping (CBQ). The follow-up included an intervention with a burn nurse as a complement to the existing program. RESULTS: Approximately half of the patients had a risk of developing PTSD three months after discharge from hospital, and body image dissatisfaction was found to potentially predict risk of PTSD during follow-up. CONCLUSIONS: The findings suggest that it is important to include patients with less extensive burns in follow-up as this group is at risk of development of PTSD. Using standardized questionnaires in early follow-up along with assessment of body image dissatisfaction may facilitate detection of psychological problems.

Feasibility of an interactive ICT-platform for early assessment and management of patient-reported symptoms during radiotherapy for prostate cancer.

PURPOSE: The aim of this study was to test the feasibility and acceptability of an Information and Communication Technology platform for assessing and managing patient reported symptoms during radiotherapy for prostate cancer. METHODS: In cooperation with a health management company, using a patient experience co-design, we developed the platform operated by an interactive application for reporting and managing symptoms in real time. Nine patients diagnosed with prostate cancer and receiving radiotherapy were recruited from two university hospitals in Sweden. Evidence-based symptoms and related self-care advice specific to prostate cancer were implemented in the application based on a literature review and interviews with patients and health care professionals. In the test of the platform the patients reported symptoms, via a mobile phone, daily for two weeks and were afterwards interviewed about their experiences. RESULTS: Overall, the patients found the symptom questionnaire and the self-care advice relevant and the application user friendly. The alert system was activated on several occasions when the symptoms were severe leading to a nurse contact and support so the patients felt safe and well cared for. CONCLUSIONS: The platform enabled increased patient involvement and facilitated symptom assessment and communication between the patient and the health care provider. The study's results support further development of the platform, as well as tests in full-scale studies and in other populations.

Validity and reliability of the Swedish version of the Memorial Symptom Assessment Scale (MSAS): an instrument for the evaluation of symptom prevalence, characteristics, and distress.

CONTEXT: There are few scales in Swedish that assess symptoms in the dimensions of frequency, severity, and distress. OBJECTIVES: The purpose of this study was to translate and determine the validity and reliability of the Memorial Symptom Assessment Scale (MSAS) in a Swedish population of postmenopausal women newly diagnosed with primary or recurrent breast cancer. METHODS: The original 32-item MSAS, a self-report measure for assessing symptom distress and frequency in cancer patients, was translated and administered to 206 patients (primary, n = 150 and recurrent, n = 56). RESULTS: The MSAS psychological symptom subscale correlated with the emotional and cognitive functioning subscales of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), and showed the highest correlation with the EORTC QLQ-C30 emotional functioning subscale (r = -0.78; P < 0.01). The psychological symptom subscale also correlated with the Hospital Anxiety and Depression Scale (HADS) within values for anxiety (r = 0.68; P < 0.01) and with the EORTC QLQ-C30 within cognitive functioning values (r = -0.58; P < 0.01). The Global Distress Index (GDI)-MSAS showed satisfactory correlations with the EORTC QLQ-C30 emotional functioning subscale (r = -0.75; P < 0.01), whereas the correlation between the GDI-MSAS and the EORTC QLQ-C30 cognitive functioning subscale was somewhat lower (r = -0.54; P < 0.01). Correlations between the GDI-MSAS and the HADS anxiety subscale were confirmed (r = 0.62; P < 0.01), and a correlation between the MSAS physical symptom items and symptom items in the EORTC-QLQ-C30 was evident (r = 0.60-0.85; P < 0.01). Cronbach's alpha coefficients for the MSAS and MSAS subscales based on symptom scores ranged from 0.80 to 0.89. The internal consistency at different time points was satisfactory, ranging from 0.86 (baseline) to 0.90 (follow-up). CONCLUSION: The Swedish version of the MSAS presents as a valid and reliable measure for assessing symptom distress, severity, and frequency in Swedish patients diagnosed with primary and recurrent breast cancer.

Mental health in significant others of patients dying from lung cancer.

OBJECTIVE: Definitions and measures of significant others' mental health vary, but stress processes have been associated with caregiver outcomes of this kind. Thus, various mental health outcomes probably appear, either as specific responses to particular types of caregiver stressors, or as part of a general response resulting from an accumulation of various stressors. The present study explores the occurrence of symptoms of strain with regard to depression, exhaustion, and emotional well-being in significant others of patients dying from lung cancer, and how these symptoms coexist. METHODS: Measures used were the Montgomery Asberg Depression Rating Scale, the OLdenburg Burnout Inventory, and the Swedish Health-Related Quality of Life Survey. Data from 84 significant others of patients dying from lung cancer were collected at a time-point during the last 4 months before the patients died and subsequently analysed. The occurrence of symptoms of strain was established by creating cut-off scores from the general population. To explore how the different symptoms coexisted, hierarchical agglomerative cluster analyses were conducted using Ward's method. RESULTS: Approximately 40% of the significant others reported symptoms of strain for each of the three outcomes, and a coexistence was found since the significant others clustered as subgroups, ranging from 'high on all scales' to 'low on all scales'. CONCLUSION: A considerable proportion of the significant others were thus negatively affected in terms of mental health. We conclude that being a significant other of a person dying from lung cancer most likely results in a general response to this major life event.

Development in quality of relationship between the significant other and the lung cancer patient as perceived by the significant other.

AIM: To prospectively explore the quality of the relationship between significant others and patients during lung cancer, based on the perceptions of the significant others. METHOD: In a sample of 91 significant others, longitudinal data were collected during the first year after diagnosis, and explored on group level and as individual patterns over time. RESULTS: Relational quality was skewed towards high quality, although 30% of the significant others reported low levels close to diagnosis. Forty-eight percent reported stability in the quality of their relationship during the disease trajectory. Within this group, 36% reported low levels of relational quality. Fifty-two percent reported change in quality of relationship and four typical patterns of change were identified. Two showed approximate linear changes in either a positive direction (15%) or a negative direction (49%), and two showed non-linear changes with a temporary ascending curve (11%) or a descending curve (26%). This implies that a change towards low levels of relational quality was most common. CONCLUSION: The present results show that illness may be a trigger for change in relational quality, which may have implications for future family-centred practice and research, since previously high relational quality has been linked to improved emotional well-being.

Nurses in cancer care--stress when encountering existential issues.

Previous research related to stress among health care staff has highlighted several complex issues; however, a deeper analysis of the existential components has been lacking. The purpose of this paper is to study the stress of registered nurses who work with terminally ill and dying cancer patients, according to an earlier model developed by Ekedahl [2001. How can you bear the Challenge of Working at the Edges of Life and Death? Coping Processes with Hospital Chaplains Encountering Existential Confrontation: a Study in Psychology of Religion., Uppsala University, Thesis Uppsala]. The present study is qualitative and hypothesis-generating. The material analyzed are based on a life story approach and interviews carried out with 15 Swedish nurses working in hospices, oncology wards, and outpatient services for patients with advanced cancer. The nurses' stress levels ranged from low to severe, including multifaceted stress with existential dimensions. Different types of stress appear to be related with the individual, group, institutional, and cultural level.

Symptom experiences during chemotherapy treatment--with focus on nausea and vomiting.

Nausea and vomiting are common and well-studied symptoms in cancer care. Most previous studies have focused on the frequency and management of these symptoms. The aim of the study was to acquire a deeper understanding of cancer patients' symptom experiences with a focus on nausea and vomiting during chemotherapy treatment, and the consequences these have on their daily lives. Nine women with different types of cancer and chemotherapy treatments were admitted for chemotherapy treatment and participated in the study. Semi-structured interviews were conducted and analysed using content analysis inspired by Kvale's methods of clarifying and developing new meaning. Five main categories were identified as "before cancer diagnosis", "being ill--consequences on daily life", "going through chemotherapy treatment", "coping with treatment" and "after treatment--looking forward to a normal life". The present findings suggest that the individual experiences of nausea and vomiting during chemotherapy treatment may have a profound effect on how treatment is perceived and may influence future decisions concerning further treatment.

Quantitative assessment of skin erythema due to radiotherapy--evaluation of different measurements.

BACKGROUND AND PURPOSE: Visual assessment is the most common clinical investigation of skin reactions in radiotherapy. Due to the unquantitative and subjective nature of this method additional non-invasive methods are needed for more accurate evaluation of the visible acute adverse skin reactions due to radiotherapy. The purpose of this study was to evaluate a new objective measure with regard to reliability and validity and compare it with an established objective measure and a visual assessment. PATIENTS AND METHODS: A sample of 53 consecutive patients commencing curative tangential radiation therapy to the breast parenchyma were included in the study. The skin area of the treated breast was divided into five sections and assessed individually at 0, 24 and 50 Gy. The RTOG scoring system was used for the visual assessment of the skin reactions. The first objective measure included reflectance spectrometry (DermaSpectrometer) measures at fixed points within the treatment area. For the second objective measure digital images (Camera) were taken with a system using a digital camera and software. The images were analyzed using the Adobe Photoshop 5.0 software program. RESULTS: The results provided significant evidence of the test-retest reliability of the camera. The correlation between the objective measures proved to be significant as the treatment progressed. CONCLUSIONS: The results suggest that the camera may be used in a reliable and valid way to measure skin erythema due to radiotherapy.