Marlene Malmström

Introduction: The complex needs of breast cancer patients should be addressed systematically. This study’s aim was to evaluate a screening-based individualized intervention following breast cancer treatment.Methods: ReScreen is a complex multicenter intervention RCT study in which primary breast cancer patients from southern Sweden were included between 2019 and 2022. Patients were screened using the Distress Thermometer before treatment, with highly distressed patients randomized into the intervention group (n=165) or the control group (n=165). Women with low distress formed an observation group (n=303). The intervention group received individualized rehabilitation that addressed women’s breast cancer treatment-related symptoms and psychosocial needs, and was carried out using a decision support tool. The between-group difference in distress (primary outcome) was evaluated up to 12 months after baseline using linear mixed-model regression analysis, as were differences in physical activity, health-related quality of life, breast cancer symptoms, and resilience.Results: The effect of the intervention on distress was small and not statistically significant. However, effects on physical activity at 6 and 12 months and on fatigue at 12 months were observed. Exploratory analyses revealed some evidence for stronger intervention effects in patients with higher initial distress.Conclusions: Individualized rehabilitation did not change distress but did increase physical activity. Vulnerable patients benefited most from the intervention.Clinical Trial Registration: The ReScreen RCT was registered in the ClinicalTrials.gov registry on 2018/11/15, NCT03434717.

Background: Family members play a crucial role in supporting women with breast cancer during their recovery. In the complex situation of being an informal caregiver, their own health and ability to support the patient needs to be acknowledged. The aim was to explore the experiences, needs and roles of family members throughout the rehabilitation process of women with breast cancer. Methods: A qualitative study was conducted, involving semi-structured individual telephone interviews with 20 purposefully selected family members of women with breast cancer (13 men aged 24–79 years, 7 women aged 19–76 years). Data analysis utilized conventional content analysis and used “casing” as the analysis technique. The study is part of the ReScreen randomized controlled trial and all participants gave informed consent. Results: The interviews revealed significant variation among family members, leading to the emergence of different typologies based on their reactions and specific preconditions. These typologies included: 1) The case of the assertive and confident team leader, 2) The case of the frustrated but persistent guardian, 3) The case of the reassured bystander, and 4) The case of the neglected outsider. While not mutually exclusive, the cases demonstrated clear similarities and differences in whether individuals felt secure or insecure in the rehabilitation process and their level of involvement in this process. Some described feelings of being involved and active in the process while others experienced not being involved and described feelings of abandonment. However, regardless of their role, family members reported that their own health was seldom considered by healthcare professionals. Conclusions: This study sheds light on the concept of “we-disease,” where the role of a family member is interrelated with factors such as their health literacy, supporting role, level of involvement, relationship, and identity during the patient's rehabilitation process. This highlights significant divergence in whether family members perceive the rehabilitation process as a collaborative effort or an individual challenge. These perceptions greatly impact their own well-being and ability to support women with breast cancer, underscoring the importance of recognizing family members as informal caregivers and offering tailored support from healthcare professionals when needed. Trial registration: ClinicalTrials.gov NCT03434717. Registered February 15, 2018.

Purpose: Resilience has been suggested as an important predictor of both physical and mental health-related quality of life in breast cancer patients. However, it is unclear why resilient women handle their diagnosis better, not only mentally, but also physically. The aim of this study was to investigate paths between resilience, physical activity, and mental, physical, and global health-related quality of life in breast cancer patients. Patients and Methods: Structural equation modeling was conducted to evaluate the proposed structural paths using a sample of 638 women with newly diagnosed breast cancer patients from Sweden. Results: Resilience was directly associated with physical activity and mental health-related quality of life. It was indirectly associated with physical functioning, through mental health-related quality of life and physical activity. Resilience was also indirectly associated with global quality of life, through mental health-related quality of life. Conclusion: Mental health support and encouraging physical activity may be especially relevant to enhance all aspects of health-related quality of life early in the breast cancer process. Results should be replicated longitudinally. Plain Language Summary: Receiving a breast cancer diagnosis can be highly disruptive to one’s worldview and sense of normalcy. Many women with breast cancer describe the diagnostic period as even more stressful than receiving treatment. However, some women handle their breast cancer diagnosis better than others. Resilience is a psychological trait that refers to one’s ability to cope with highly stressful events and maintain good wellbeing despite adversity. More resilient women were shown to handle a breast cancer diagnosis better, not only mentally, but also physically. They also describe their quality of life as higher than low resilient women. However, it is unclear why resilient women have not only better mental health, but also physical health. In this study, we addressed this question by examining the relationships between resilience, mental health, physical functioning, physical activity, and patients’ self-reported quality of life. We found that mental health and physical activity explained the relationship between resilience and physical functioning and self-reported quality of life. This suggests that highly resilient women experience less psychological distress following a breast cancer diagnosis and are more inclined to maintain physical activity during this stressful period. Consequently, they may manage to have better physical functioning and evaluate their quality of life as better. This study highlights the importance of psychosocial support and encouraging physical activity in women with breast cancer who may struggle to cope with their diagnosis. This study implies that this can not only alleviate psychological distress, but also aid one’s physical functioning and overall quality of life.

Background: A substantial proportion of women with breast cancer (BC) experience a wide range of long-term persistent and troublesome side effects related to the disease and its treatment. The ReScreen randomized controlled trial is conducted aiming to evaluate the effect of early screening of distress followed by individualized rehabilitation after primary BC treatment. Purpose: To examine recruitment, retention, distribution of distress, relevance of intervention and reported problems in a pilot trial of the ReScreen RCT. Patients and methods: Based on international research, a cutoff of ≥ 7 on the Distress Thermometer was used to identify women in need of extended support. Those who reported high distress were randomized to intervention group (IG, n = 9) or control group (CG, n = 9), while women with low distress formed an observational group (OG, n = 67). Self-reported data was collected at baseline, 2 weeks and 3, 6, 9, and 12 months after start of treatment. The participants were recruited from a BC unit in Sweden. Descriptive statistics were used for analyses. Results: Eighty-five patients consented to participate. The recruitment rate was 73%, answer frequency was 98%, 64%, 95%, and retention rate was 100%, 56%, 91% in the IG, CG and OG, respectively. Few systematic errors were identified. When exploring the distribution of distress, it was evident that the participants scoring ≥ 7 were fewer (21.2%) than reported in previous studies (34– 43%). The most commonly problems reported were in line with previous reports of symptoms, including fatigue and worry. Conclusion: The satisfactory rates of inclusion and data collection and the few systematic errors indicate that the ReScreen study is feasible if well planned and executed. To identify patients in need of extended support, an adjustment of the cutoff in the main study is indicated. Based on self-reported problems, the intervention was found relevant in this context.

Background: Patients diagnosed with oesophageal and gastric cancer face a poor prognosis and numerous challenges of symptom management, lifestyle adjustments and complex treatment regimens. The multifaceted care needs and rapid disease progression reinforce the need for proactive and coherent health care. According to the national cancer strategy, providing coherent health care and palliative support is an area of priority. More knowledge is needed about health care utilization and the characteristics of the health care service in order to understand the readiness, accessibility and quality of current health care. The aim of this study was to describe individuals’ health care use from the time of treatment decision until death, and investigate the impact of the initial treatment strategy and assignment of a contact nurse (CN) on health care use among patients with oesophageal and gastric cancer. Methods: This population-based cohort study included patients who died from oesophageal and gastric cancer in Sweden during 2014–2016. Through linking data from the National Register for Oesophageal and Gastric Cancer, the National Cause of Death Register, and the National Patient Register, 2614 individuals were identified. Associations between the initial treatment strategy and CN assignment, and health care use were investigated. Adjusted incidence rate ratios (IRRs) with 95% confidence intervals (CIs) were calculated using Poisson regression. Results: Patients receiving palliative treatment and those receiving no tumour-directed treatment had a higher IRR for unplanned hospital stays and unplanned outpatient care visits compared with patients who received curative treatment. Patients receiving no tumour-directed treatment also had a lower IRR for planned hospital stays and planned outpatient care visits compared with patients given curative treatment. Compared with this latter group, patients with palliative treatment had a higher IRR for planned outpatient care visits. Patients assigned a CN had a higher IRR for unplanned hospital stays, unplanned outpatient care visits and planned outpatient care visits, compared with patients not assigned a CN. Conclusions: A palliative treatment strategy and no tumour-directed treatment were associated with higher rates of unplanned health care compared with a curative treatment strategy, suggesting that a proactive approach is imperative to ensure quality palliative care.

Oesophageal and gastric cancer are highly lethal malignancies with a 5-year survival rate of 15–29%. More knowledge is needed about the quality of end-of-life care in order to understand the burden of the illness and the ability of the current health care system to deliver timely and appropriate end-of-life care. The aim of this study was to describe the impact of initial treatment strategy and survival time on the quality of end-of-life care among patients with oesophageal and gastric cancer. This register-based cohort study included patients who died from oesophageal and gastric cancer in Sweden during 2014–2016. Through linking data from the National Register for Esophageal and Gastric Cancer, the National Cause of Death Register, and the Swedish Register of Palliative Care, 2156 individuals were included. Associations between initial treatment strategy and survival time and end-of-life care quality indicators were investigated. Adjusted risk ratios (RRs) with 95% confidence intervals were calculated using modified Poisson regression. Patients with a survival of ≤3 months and 4–7 months had higher RRs for hospital death compared to patients with a survival ≥17 months. Patients with a survival of ≤3 months also had a lower RR for end-of-life information and bereavement support compared to patients with a survival ≥17 months, while the risks of pain assessment and oral assessment were not associated with survival time. Compared to patients with curative treatment, patients with no tumour-directed treatment had a lower RR for pain assessment. No significant differences were shown between the treatment groups regarding hospital death, end-of-life information, oral health assessment, and bereavement support. Short survival time is associated with several indicators of low quality end-of-life care among patients with oesophageal and gastric cancer, suggesting that a proactive palliative care approach is imperative to ensure quality end-of-life care.

Background: It is well known that women suffer from negative consequences following breast cancer (BC) treatment and that their largely varying needs for rehabilitation are often unmet. Up to 43% of these women are at risk of developing chronic distress requiring complex interventions; however, how to early identify and meet these women’s needs is unknown, leaving them with suboptimal chances of rehabilitation. The aim of the ReScreen study is to develop a model for and evaluate the effect of screening-based, individualized rehabilitation following primary BC treatment. Methods: The ReScreen study is designed as a complex intervention. Women with newly diagnosed BC are consecutively included in a three-armed randomized controlled trial. At inclusion, patients score their distress level on the Distress Thermometer (scale of 0–10) aiming to identify patients with extended rehabilitation needs. Patients scoring ≥5 are randomized to the intervention or control group while patients scoring ≤4 are followed longitudinally as an observational group. Patients in the intervention group, in conjunction with a dedicated research nurse, create an individualized rehabilitation plan based on an evidence-based decision support tool that was developed to create a solid base for the intervention. The research nurse will act as a continuous health care contact and be responsible for proactively and systematically evaluating patients’ needs to ensure that potential new problems or changed rehabilitation needs are identified throughout the 1-year follow-up period. The intervention will be evaluated through self-reported data focusing on physical and psychological outcomes as well as evaluation of satisfaction with care at baseline, 2 weeks and 3, 6, 9 and 12 months. Evaluation will also include health economic aspects based on register data and patients’ and relatives’ experiences of the rehabilitation process. In addition, optimal cut-off levels for distress as an indicator for extended rehabilitation needs will be investigated. Discussion: This study will provide important knowledge related to effectiveness of screening-based identification of rehabilitation needs and standardized evidence-based, individualized rehabilitation after primary BC treatment. With a complex intervention design, this study has the potential to form a comprehensive knowledge base which includes tools and guidelines for implementation into clinical practice. Trial registration: ClinicalTrials.gov NCT03434717. Registered February 15, 2018.

Background: Breast cancer (BC) and related treatment are associated with the risk of developing a wide range of persistent disabling impairments. Despite extensive research in the field and an enhanced focus on BC rehabilitation, up to 34–43% of these patients are at risk of developing chronic distress. In addition, it is known that these patients repeatedly report unmet needs, which are strongly associated with reduced quality of life. However, despite knowledge that patients’ needs for support during BC rehabilitation varies greatly, individualized rehabilitation is often lacking. Therefore, this study aimed to explore health care professionals’ (HCPs) experiences of current rehabilitation practice and describe current barriers and facilitators for individualized rehabilitation for patients following BC treatment. Methods: A total of 19 HCPs were included, representing various professions in BC care/rehabilitation within surgical, oncological and specialized cancer rehabilitation units at a university hospital in Sweden. Five semi structured focus group interviews were conducted and inductively analysed using conventional qualitative content analysis. Results: Three categories were captured: (1) varying attitudes towards rehabilitation; (2) incongruence in how to identify and meet rehabilitation needs and (3) suboptimal collaboration during cancer treatment. The results showed a lack of consensus in how to optimize individualized rehabilitation. It also illuminated facilitators for individualized rehabilitation in terms of extensive competence related to long-term experience of working with patients with BC care/rehabilitation. Further, the analysis exposed barriers such as a great complexity in promoting individualized rehabilitation in a medically and treatment-driven health care system, which lacked structure and knowledge, and overarching collaboration for rehabilitation. Conclusion: This study suggests that the cancer trajectory is medically and treatment-driven and that rehabilitation plays a marginal role in today’s BC trajectory. It also reveals that structures for systematic screening for needs, evidence-based guidelines for individualized rehabilitation interventions and structures for referring patients for advanced rehabilitation are lacking. To enable optimal and individualized recovery for BC patients’, rehabilitation needs to be an integrated part of the cancer trajectory and run in parallel with diagnostics and treatment.

Purpose: Multidisciplinary team meetings (MDTMs) are an integral component of cancer care. Increasingly, virtual MDTMs are used to grant high-quality treatment recommendations across health-care regions, which expands and develops the local MDTM team to a regional or national expert network. We investigated health professionals’ experiences from national, virtual MDTMs for rare cancer with a focus on key enabling factors and barriers. Methods: Health professionals who participate in seven national, virtual MDTMs in Swedish health-care responded to a questionnaire exploring key enabling factors, barriers and opportunities for MDTM development. Conventional content analysis was used to identify thematic categories based on free-text responses. Results: Participants´ perspectives could be assigned into three categories ie, a national arena with potential for comprehensive knowledge and collaboration, prerequisites for decision-making and organization and responsibilities. These categories consisted of nine sub-categories that referred to, eg, collective competence, resources, clinical research, case discussion, meeting climate, patient-related information, MDTMs potential, referral and technical insufficiencies. Conclusion: National, virtual MDTMs represent a new multidisciplinary collaborative arena that introduces benefits as well as challenges. Consideration of key enabling factors and barriers may ease implementation and further optimize MDTMs in cancer care.

To avoid discomfort, health care professionals may hesitate to pursue conversations about end of life with patients. Certain tools have the potential to facilitate smoother conversations in this matter. The objective was to explore the experiences of patients in palliative care in using statement cards to talk about their wishes and priorities. Forty-six cards with statements of wishes and priorities were developed and tested for feasibility with 40 participants, who chose the 10 most important cards and shared their thoughts about the statements and conversation. Data from individual interviews and field notes were analyzed using content analysis. One category describes practical aspects of using the cards including the relevance of the content and the process of sorting the cards. The second category describes the significance of using the cards including becoming aware of what is important, sharing wishes and priorities, and reflecting on whether wishes and priorities change closer to death. The cards helped raise awareness and verbalize wishes and priorities. All statements were considered relevant. The conversations focused not only on death and dying, but also on challenges in the participants' current life situation. For the most ill and frail participants, the number of cards needs to be reduced.