What factors contribute to cancer survivors' self-management skills? A cross-sectional observational study.

PURPOSE: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors' self-management skills. METHODS: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. RESULTS: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants' recognition and management, and therapy adherence (PIH-MSA). CONCLUSIONS: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.

The role of cancer nurses in cancer-related pain management in Europe.

Cancer pain is a common symptom in patients with cancer and can largely affect their quality of life. Pain management is important to minimize the impact of pain on daily activities. Cancer nurses are significantly involved in all steps of pain management and contribute to the success of therapy through their knowledge and expertise. While they generally play an important role in the screening, assessment, diagnosis, treatment and follow-up of patients and their (pain) symptoms, this varies from country to country in Europe. An important aspect is their role in educating patients and their families about what pain is, what impact it can have, how it can be treated pharmacologically or non-pharmacologically and what effects or problems can occur during treatment. While there is a great discrepancy between education and training opportunities for cancer nurses in different European countries, there is a continued need for education and training in pain management. Cancer is increasingly becoming a chronic disease, and the management of pain in cancer survivors will be crucial to maintain an adequate quality of life. With this, the crucial role of cancer nurses is becoming even more important.

Cancer care during the Covid-19 pandemic from the perspective of patients and their relatives: A qualitative study.

Objective: The Covid -19 pandemic has had a major influence on the organization of cancer care. Little is known about how patients with cancer and their relatives experienced this period. This study explored these experiences and levels of distress and resilience of Dutch cancer patients and their family caregivers during the Covid-19 pandemic. Methods: The qualitative design included in-depth interviews with cancer patients and their family caregivers to explore their experiences. The distress thermometer (NCCN-DT) and resilience questionnaire (CD-RISC2) were used for contextualizing. Data were analyzed by thematic analysis and descriptive statistics. Results: 40 patients with breast cancer, lung cancer, colorectal cancer, or melanoma who received active systemic anti-cancer therapy, were included with a median age of 60 years[SD11.1]. We also included fourteen family caregivers with a median age of 60 years [SD8.6].Five themes were identified: (1) Living with cancer during Covid-19, (2) Changes in cancer care, (3) Information and support, (4) Safety inside the hospital, and (5) Impact of vaccination. The mean score of NCCN-DT was 2.9[SD2.4] for patients and 4.3[SD2.7] for family caregivers. Mean score of CD-RISC2 was 6.6[SD1.4] for patients and 7.2[SD1] for family caregivers. Conclusions: Patients felt vulnerable during the pandemic and were strict in following the safety precautions. The limited companionship of family caregivers was experienced as the biggest restraint. In general, they felt safe inside the hospital. Vaccination brought some relief. Patients were satisfied with the provided support, but areas were identified which are amenable for redesigning care processes.

Exploring the Psychosocial Needs of Adolescents Whose Parent Is Diagnosed With Breast Cancer.

PURPOSE: Cancer has a major impact on the individual patient and their family, especially children. However, little is known about the needs of adolescents (10-19 years) whose parent is diagnosed with cancer, especially breast cancer. Insights into psychosocial needs are important to develop appropriate guidance and support for these adolescents. The aim of this study is to explore the psychosocial needs of adolescents whose parent is diagnosed with breast cancer to improve the support for these adolescents. DATA SOURCES: This is an exploratory, qualitative study. In-depth interviews were conducted, and an interview guide was designed with the following topics: experiences, needs, and support. Participants were selected purposively and approached via the parent(s) after consultation. Interviews were audiotaped, transcribed, and thematically analyzed by using the software program NVivo. CONCLUSION: Fourteen adolescents (12-19 years) were interviewed, which resulted in five themes: distraction, support, being able to talk about it, information, and continuing a normal life. Adolescents whose parent is diagnosed with breast cancer need the best possible preservation of their normal lives. It is important for them to be able to share their story and find support from someone close to them. IMPLICATION FOR NURSING PRACTICE: The route to the adolescent is always through the parent. Healthcare professionals can discuss the well-being of the adolescent during regular consultation with the parent. If there are concerns, healthcare professionals can advise the parent about the possible needs of the adolescent and could coach the parent in supporting the adolescent to discuss their needs.

"If only I had", patients' experiences during early oncology trials.

PURPOSE: Until today, it is not clear why patients decide to continue with early clinical trial (ECT) participation. Therefore, the aim of this study is to explore to which extent the self-determination theory of Ryan and Deci, according to the ECT enrollment phase, corresponds to the motivations of participants during ECT's. METHODS: This study has a qualitative design. Data were collected using semistructured interviews and were deductively analyzed in Nvivo12 using the thematic analysis approach of Braun and Clarke. RESULTS: As a result of the deductive analysis performed, six themes and twenty subthemes emerged which matched the three personal needs: competence, relatedness, and autonomy (n = 11). "Competence" included the following themes: mixed future expectations, treatment expectations, and control of the outcome. "Relatedness" included the theme altruistic motivation. "Autonomy" included the themes; to live and act in harmony as well as mental and physical burden. CONCLUSION: Participants felt they tried everything and that they were treated to the limit. This not only gives the motivation to continue participating but also a sense of altruism. Despite different burdens, side-effects, and the feeling of being a test subject, the participants will not easily choose to stop participation in order to prevent saying afterwards: "If only I had".

A Delphi Study of Core Patient-Reported Outcomes for Advanced Renal Cell Carcinoma and Advanced Hepatocellular Carcinoma.

OBJECTIVES: There is little research to help health care professionals understand what patient outcomes are considered a priority in advanced liver or kidney cancer. Knowing what is important to patients can help promote person-centered approaches to treatment and disease management. The aim of this study was to identify those patient-reported outcomes (PROs) that patients, carers, and health care professionals consider as "core" when providing care to those with advanced liver or kidney cancer. DATA SOURCES: A three-round Delphi study was undertaken to ask experts by profession or experience to rank PROs identified from a previous literature review. Fifty-four experts, including people living with advanced liver or kidney cancer (44.4%), family members and caregivers (9.3%), and health care professionals (46.8%), reached consensus on 49 PROs including 12 new items (eg, palpitations, hopefulness, or social isolation). Items with the highest rate of consensus included quality of life, pain, mental health, and capacity to do daily activities. CONCLUSION: People living with advanced liver or kidney cancer experience complex health care needs. Some important outcomes were not actually captured in practice in this population and were suggested as part of this study. There are discrepancies between the views of health care professionals, patients, and family in what is important, highlighting the need of using measures to facilitate communication. IMPLICATIONS FOR NURSING PRACTICE: Identification of priority PROs reported here will be key to facilitate more focused patient assessments. The actual use of measures in cancer nursing practice to allow monitoring of PROs must be tested for feasibility and usability.

The future of cancer nursing in Europe: Addressing professional issues in education, research, policy and practice.

Cancer nursing has evolved to meet the demands of rising cancer incidence, newer and more complex treatment options, and the emergence of specialist roles supporting patients from pre-diagnosis, through treatment, survivorship and end of life care. Nurses are involved in direct and in-direct care of people at risk of, and living with and after cancer in diverse contexts. As a result, nurses are positioned to have a significant influence on the processes and outcomes of cancer care, through education, research, policy, practice and leadership. However, nursing and cancer care face challenges, arising from workforce shortages, under-investment in services and under-representation in decision-making. This paper discusses the evolution of cancer nursing across education, policy, research, profession and practice, and sets an agenda for innovation and disruption across these domains to ensure sustainability of cancer care services and care for people living with and after cancer. We argue for the continued advancement of cancer nursing with critical focus on identifying and addressing inequities in role recognition and access to specialist cancer nursing education throughout Europe. Partnership, exchange of learning, and co-design will be central to progressing education, evidence and policy to support future growth in the cancer nursing workforce and embed cancer nurses in research and policy setting at local, national and international levels.

A rapid review of patient-reported outcomes investigated in the context of advanced renal cell cancer or advanced hepatocellular cancer.

BACKGROUND: Patient-reported outcomes (PROs) are key indicators of health status and functioning, coming directly from the patient. Comprehensive monitoring of PROs enables implementation of person-centred care. Currently, the PROs that patients with advanced renal cell carcinoma (RCC) or hepatocellular carcinoma (HCC) consider of greatest importance remains unknown. METHODS: A rapid literature review was carried out to identify PROs commonly reported in clinical studies of patients with advanced RCC/HCC. We searched MEDLINE, CINAHL & PsycInfo for relevant peer-reviewed publications in the period from 2000 to 2021. Pre-specified selection criteria were applied to all retrieved records. Findings were integrated into a narrative synthesis. RESULTS: Eighty-one studies met our selection criteria and were retained. Most research was on advanced RCC (n = 64, 79%); 46 studies (57%) were drug trials. Only twenty-six studies (32%) employed PROs as their primary endpoint. Most PROs concerned physical symptoms (45% RCC, 54% HCC) and emotional wellbeing (19% RCC, 16% HCC). The most common outcome measured was quality of life (65% of the total), followed by fatigue (62%) and pain (54%). Whether selection of these PROs was patient-driven was not reported. CONCLUSIONS: A wide range of PROs were assessed. Deficits in PROs often cause patients to seek out help; however, which PROs matter the most to people with advanced RCC/HCC must be further clarified. Targeting, monitoring, and responding to the 'right' PROs can enhance provision of person-centred care in advanced RCC/HCC and augment the clinical efficacy of established and emerging targeted therapies.

Evaluation of an online tool about the expected course of disease for glioblastoma patients-A qualitative study.

Background: Patients with glioblastoma have a short life-expectancy, with median survival rates of 9 to 12 months. Providing information about the expected course of the disease can be complicated. Therefore, an online tool has been developed. The objective of this tool is to better inform patients and proxies, and decrease their uncertainties and improve their quality of life. This study aims to gather experiences of an initial cohort of patient-proxy dyads, to identify if the tool meets the previously mentioned objectives. Methods: This is a qualitative study based on thematic analysis. Interviews were conducted with 15 patient-proxy dyads. For these interviews, a combined method of think-aloud sessions and semi-structured interviews were used. Audiotapes of these interviews were transcribed verbatim and thematically analyzed. Results: The analysis revealed four major themes, namely, unmet information needs, improvement possibilities, effects of the tool and clinical implementation. Participants indicated that this tool could decrease uncertainties and increase their perceived quality of life. Also, they often mentioned that it could have a positive effect on the efficiency and quality of consultations. Conclusion: Participants considered this tool to be useful and effective in decreasing uncertainties for both patients with glioblastoma and their proxies. Moreover, participants brought up that this tool could positively influence the efficiency and quality of consultations. This could lead to more patient participation and empowerment, and could therefore enhance shared decision making and timely advanced care planning.

Evaluation of a Nurse-led Aftercare Intervention for Patients With Head and Neck Cancer Treated With Radiotherapy and Cisplatin or Cetuximab.

BACKGROUND: The supportive needs for head and neck cancer (HNC) patients during the vulnerable period after treatment are not always met. Therefore, more professional support regarding physical, social, and psychological care as well as lifestyle is recommended. OBJECTIVE: This study is an evaluation of a nurse-led aftercare intervention to support patients recovering from HNC treatment. METHODS: Intervention group (IG) participants received 2 extra consultations from a nurse practitioner 3 and 9 months after treatment of HNC. A holistic conversational tool, the Self-Management Web, was developed to guide the nurse through the conversation. Primary outcomes were health-related quality of life (HRQoL) and quality of patient-centered care. A secondary outcome was self-management skills. RESULTS: Twenty-seven patients were included in the IG, and 28 were included in the control group. Differences in HRQoL and self-management between the IG and the control group were not statistically significant. For the IG, all domains of the Self-Management Web were perceived important and addressed by the nurse practitioner. CONCLUSION: This holistic nurse-led aftercare intervention was highly appreciated by HNC patients. Although the intervention met the need for support in recovery after treatment, it did not improve HRQoL or self-management skills. IMPLICATIONS OF PRACTICE: For both nurses and patients, the intervention is feasible and acceptable in daily practice. Self-management support for patients after their cancer treatment is of added value and has potential to improve the quality of regular follow-up care.

Evaluation of a Nurse-Led Patient Navigation Intervention: Follow-Up of Patients After Autologous and Allogeneic Stem Cell Transplantation.

BACKGROUND: Complex survivorship cancer care requires nurse-led interventions. Therefore, a nurse-led patient navigation intervention was developed in which trained cancer nurses gave advice and referred to other professionals during the process of recovery and rehabilitation of hematopoietic stem cell transplantation (HSCT) patients. OBJECTIVE: The aim of this study was to understand the nature and effect of this nurse-led information and referral intervention. METHODS: Of the 199 included patients in the intervention group, 75 completed the quality of life, quality of care, self-efficacy, and self-management behavior questionnaires at baseline and at 6 and 12 months after HSCT. A historical control group of 62 patients completed the same questionnaires 12 months after HSCT. In addition, patients' experiences with the intervention were evaluated in 2 focus groups. RESULTS: Patients emphasized the holistic approach of the cancer nurses and the opportunity to discuss psychosocial domains of life. Within the intervention group, a statistically significant effect on quality of life was demonstrated over time. The differences in quality of life, self-efficacy, and self-management were not significant between the intervention group and control group. CONCLUSION: The holistic focus of this nurse-led intervention proved to be acceptable to the HSCT patients and promising in supporting the (complex) challenges that these patients face during their process of recovery and rehabilitation. IMPLICATIONS FOR PRACTICE: Nurse-led patient navigation interventions with a holistic approach when included in the daily practice of complex survivorship cancer care can support HSCT patients' information and referral needs during their rehabilitation.

Hydration and symptoms in the last days of life.

OBJECTIVES: At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness. METHODS: A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected. RESULTS: 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48-25 hours before death. CONCLUSIONS: Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48-25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.

Oncology nursing workforce: challenges, solutions, and future strategies.

The global oncology nursing workforce is essential to achieving Sustainable Development Goals 3.4 (reduce non-communicable disease morbidity by a third by 2030) and 3.8 (universal health coverage). Unfortunately, challenges to a robust oncology nursing workforce include nursing shortages, recruitment barriers (eg, perceptions of a demanding specialty with complex care and hazardous work environments), and burnout. Innovative recruitment strategies, onboarding and continuing education programmes, occupational safety measures, and burnout prevention interventions are documented solutions. The long-term effect of COVID-19 on oncology care worldwide is unknown, but immediate therapy interruptions, workforce consequences, and threats to standard oncology nursing practice are addressed here. Retention of experienced oncology nurses is crucial for future cancer control in all countries and must be addressed, particularly in resource-constrained countries with few oncology nursing staff and continuing out-migration of nurses to resource-rich countries. As the cancer burden worldwide increases, the future of the oncology nursing workforce is reflected in the call from the International Council of Nurses, Nursing Now, and WHO for nurses to move to higher levels of leadership, advocacy, and policy making (ie, national cancer control planning) and assume responsibility for their key role in achieving global goals for cancer control.

Essential oncology nursing care along the cancer continuum.

Oncology nurses are at the heart of tackling the increasing global burden of cancer. Their contribution is unique because of the scale and the diversity of care roles and responsibilities in cancer care. In this Series paper, to celebrate the International Year of the Nurse and Midwife, we highlight the contribution and impact of oncology nurses along the cancer care continuum. Delivering people-centred integrated care and optimal communication are essential components of oncology nursing care, which are often played down. More oncology nurses using, doing, and leading research will further show the key nursing impact on care as part of a team. The oncology nurse influence in saving lives through prevention and early detection of cancer is noteworthy. Supportive care, the central pillar of oncology nursing, enables and empowers people to self-manage where possible. Globally, oncology nurses make a great positive difference to cancer care worldwide; their crucial contribution throughout the continuum of care warrants the inclusion and promotion of nursing in every country's cancer strategy. 2020 is the year of the nurse: let us take this learning to the future.

The experiences of cancer nurses working in four European countries: A qualitative study.

PURPOSE: Cancer nurses across Europe are being tasked with delivery of an increasing number of complex treatments and supportive care interventions as a result of ongoing advances in cancer research, and a rise in cancer incidence due to demographic changes. However, all health systems delivering cancer treatment innovations require access to an educated and motivated nursing workforce to meet demand. This study by the European Oncology Nursing Society examines comparative features of cancer nursing in Estonia, Germany, the Netherlands (NL) and the United Kingdom (UK). METHODS: Descriptive qualitative study using focus groups and individual interviews drawing on the views of cancer nurses, managers and stakeholders from four European countries (n = 97). Data collection was designed around national cancer nursing conferences held in Berlin (Germany), Ede (NL), Harrogate (UK) and Tallinn and Tartu (Estonia) between May 2017 and April 2018. Participants included a mix of nursing grades and specialisms. FINDINGS: According to the participants education and career structure for cancer nursing was most well-developed in the Netherlands and the United Kingdom. In Germany and Estonia developments were taking place at Masters level. None of the countries had recordable qualifications in cancer nursing. Variations existed in terms of advanced practice roles and salary. Workload pressures were common, and were rising, and wellbeing initiatives were not identified. Nurses reported gaining positive feedback from caring for patients. DISCUSSION: As demand for cancer treatment continues to grow there is a need to ensure an adequate supply of cancer nurses with the appropriate education and career structure to support patients. This study provides insights from four countries and suggests the need for better recognition as well as working conditions, education and career structures that advance the potential of the cancer nursing role in Europe.

Self-management of patients with advanced cancer: A systematic review of experiences and attitudes.

BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles). CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

Home Telemonitoring Improved Pain Registration in Patients With Cancer.

INTRODUCTION: For adequate pain treatment in patients with cancer, it is important to monitor and evaluate pain regularly. Although the numeric rating scale (NRS) is implemented in hospitals in the Netherlands, pain is still not systematically registered during outpatient consultations. The aim of this study was to assess whether home telemonitoring increases pain registration in medical records of outpatients with cancer. METHODS: Patients with cancer were included in the intervention group (IG) when they visited the outpatient clinic. They received a short message service and an interactive voice response on their mobile phones 3 times a week, asking them to provide their pain score (NRS). When the reported NRS pain score was ≥5, a specialized oncology nurse adapted the pain treatment when necessary. Outcomes were compared to a control group (CG) without home telemonitoring. In both groups, medical records were analyzed and data on pain and analgesics were collected. RESULTS: In each group, the medical records of 54 patients were analyzed on 3 consecutive outpatient visits. In the CG, pain registration or its absence was described in 60 visits (37.0%). In the IG, pain registration or its absence was reported in 83 visits (51.2%). Patients in the IG received a prescription for analgesics significantly more often (36/54 patients [66.6%]) than did patients in the CG (18/54 patients [33.3%]), P < 0.01). CONCLUSION: Home telemonitoring for patients with cancer significantly increases registration of pain and prescriptions of analgesics in outpatient medical records. Home telemonitoring helps to increase the awareness of pain and its management.

Validation of the Dutch Version of the Breakthrough Pain Assessment Tool in Patients With Cancer.

CONTEXT: Essential for adequate management of breakthrough cancer pain is a combination of accurate (re-)assessment and a personalized treatment plan. The Breakthrough Pain Assessment Tool (BAT) has been proven to be a brief, multidimensional, reliable, and valid questionnaire for the assessment of breakthrough cancer pain. OBJECTIVES: The aim of this study was to examine the validity and reliability of the Dutch Language version of the BAT (BAT-DL) in patients with cancer. METHODS: The BAT was forward-backward translated into the Dutch language. Thereafter, the psychometric properties of the BAT-DL were tested, that is factor structure, reliability (internal consistency and test-retest reliability), validity (content validity and construct validity), and the responsiveness to change. RESULTS: The BAT-DL confirmed the two-factor structure in 170 patients with cancer: pain severity/impact factor and pain duration/medication efficacy factor. The Cronbach's alpha coefficient was 0.72, and the intraclass correlation for the test-retest reliability was 0.81. The BAT-DL showed to be able to differentiate between different group of patients and correlated significantly with the Brief Pain Inventory. In addition, the BAT-DL was capable to detect clinically important changes over time. CONCLUSION: The BAT-DL is a valid and reliable questionnaire to assess breakthrough pain in Dutch patients with cancer and is a relevant questionnaire for daily practice.