A fast transition: A case study of patients' experiences during the diagnostic and surgical treatment phase of an accelerated brain cancer pathway.

BACKGROUND: Patients receiving a brain cancer diagnosis may face cognitive decline and a poor prognosis. In addition, they suffer from a high symptom burden in a complex cancer pathway. The aim of this study was to investigate the early hospital experiences of brain tumour patients during the diagnostic and surgical treatment phase. METHODS: A descriptive longitudinal single-case study design was used, and data were analysed via systematic text condensation. RESULTS: The patients' experiences of being diagnosed with and treated for brain cancer were interpreted in terms of the central theme: a fast transition into an unknown journey. This theme consisted of the following subthemes: emotionally overwhelmed, putting life on hold and an unfamiliar dependency. CONCLUSIONS: Patients diagnosed with brain cancer struggle with overwhelming emotions due to this sudden life-threatening diagnosis, their fear of brain surgery and their progressing dependence. Patients did not voice their feelings, fears or needs, so these may easily be overlooked and unmet. A proactive and continuous care approach throughout the diagnostic phase is needed to support these patients.

Men's perception of information and psychological distress in the diagnostic phase of prostate cancer: a comparative mixed methods study.

BACKGROUND: Previous studies indicate that men experience frustration and uncertainty when confronted with an elevated prostate specific antigen (PSA) test and during further diagnostics for prostate cancer. The novel Stockholm3 test is an algorithm-based test that combines plasma protein biomarkers, genetic markers and clinical variables in predicting the risk of PCa. The test was introduced in a western part of Norway as a new tool for detecting prostate cancer. This study aimed to explore and compare men's perception of information and possible experience of distress between a PSA group and a Stockholm3 group during the diagnostic phase of prostate cancer. METHODS: This study is a part of the trailing research evaluating the impact of the change from PSA to Stockholm3. It is a multicenter study using a comparative mixed method design. Data were collected in a PSA group (n = 130) and a Stockholm3 group (n = 120) between 2017 and 2019. Quantitative data were collected using questionnaires and qualitative data were collected using semi-structured interviews (n = 20). The quantitative and qualitative data were analysed and compared separately and then merged in a side-by-side discussion. The study adheres to the GRAMMS guidelines for reporting mixed-methods research. RESULTS: Compared with the PSA group, men in the Stockholm3 group reported that the information from the general practitioners was better. Similarly, men in the Stockholm3 group were more likely to indicate that they had received sufficient information regarding how examinations would be conducted. No differences were found between the groups regarding waiting time and distress. Three themes emerged from the qualitative analysis of the two groups: "Information affects the experience of comprehension", "Stepping into the world of the healthcare system", and "Periodically feelings of distress". CONCLUSION: The Stockholm3 test may facilitate the provision of information to patients. However, some patients in both groups experienced distress and would benefit from more information and additional support from healthcare professionals. Routines that ensure sufficient information from the interdisciplinary healthcare team should be of priority during the diagnostic phase of prostate cancer in order to provide patients with predictability and to avoid unnecessary distress.

Men's perception of information and descriptions of emotional strain in the diagnostic phase of prostate cancer-a qualitative individual interview study.

OBJECTIVE: To explore men`s perception of information and their possible emotional strain in the diagnostic phase of prostate cancer. DESIGN, SETTING, PATIENTS: A qualitative explorative research design was employed. Data were collected from June to November 2017. The study was set at a urological outpatient clinic at a university hospital in Norway. Semi-structured interviews were conducted with ten men who had been examined for prostate cancer. Interviews were analyzed using Systematic Text Condensation (STC). RESULTS: The analysis revealed three themes. The theme 'Different needs and perceptions of information' illustrated that information should be personalized. Despite different information needs, insufficient information about prostate cancer may prevent some men from being involved in decisions. The theme, 'A discovery of not being alone', indicated that a sense of affinity occurs when men realize the commonality of prostate cancer. Some men benefited from other men's experiences and knowledge about prostate cancer. The last theme 'Worries about cancer and mortality' showed that the emotional strain was affected by men's knowledge of cancer and the received information. Men expressed conflicting feelings toward prostate cancer that could be difficult to express. CONCLUSIONS: The findings indicate that men in the diagnostic phase of prostate cancer are not a homogeneous group, but need personalized information. Some men may benefit from other men's experiences and support. Men's emotional strain can affect their communication about prostate cancer, which should be acknowledged. Procedures that identify patients' information needs early on should be an integrated part of the diagnostic phase of prostate cancer.KEY POINTSKnowledge about men's information needs and possible emotional strain in the diagnostic phase of prostate cancer are limited.Men with suspected prostate cancer have different preferences and information needs; however, insufficient information prevents men from participating in decisions.Men experience a sense of affinity with other men affected by prostate cancer, and some men benefit from exchanging experiences.Men consider prostate cancer as a less aggressive type of cancer but may experience emotional strain.

The experiences of health-related quality of life in patients with nonspecific symptoms who undergo a diagnostic evaluation for cancer: a qualitative interview study.

The diagnostic phase of cancer can affect health-related quality of life (HRQoL). The aim of this study was to investigate how patients with nonspecific symptoms experience HRQoL while undergoing diagnostic evaluations for cancer. Twenty-one participants who had completed a fast-track evaluation for possible cancer at one of three hospitals in the Capital Region, Denmark were interviewed 2-4 weeks after completing diagnostic evaluations. The interviews were semi-structured and were supported by an interview guide based on the same themes as in The European Organisation for Research and Treatment of Cancer Quality of Life questionnaire (EORCT-QLQ-C30). Data analysis was based on qualitative content analysis by Krippendorff. The analysis generated six categories: symptoms, physical-, role-, emotional-, cognitive- and social functioning, and the diagnostic fast-track experience. From these categories, a main theme was identified: Health-related quality of life is not solely affected by the diagnostic process. The results provide a comprehensive understanding of HRQoL in the diagnostic phase of possible cancer, which can be used not only to enhance evidence-based care, but also in the interpretation of the EORTC-QLQ-C30 scores. Psycho-social support with a focus on individual informational needs during the diagnostic phase may be warranted.

The role of oncology nurse navigators in enhancing patient empowerment within the diagnostic phase for adult patients with lung cancer.

OBJECTIVE: The objective of this study was to explore the role of oncology nurse navigators (ONN) in enhancing patient empowerment for adult patients with lung cancer during the diagnostic phase of cancer care. DESIGN: A qualitative descriptive design was used. Data were gathered through individual patient interviews and a focus group with the ONNs. RESULTS: Eight individuals participated: four adult patients with lung cancer and four oncology nurse navigators. Themes regarding the clinical functions of the ONN role in enhancing patient empowerment were identified: patient advocate, educational support, personalized symptom management, and resource navigation. CONCLUSION: ONNs are in a key position to adapt their practice to the emotional and supportive care needs required to promote patient and family empowerment.

The role of oncology nurse navigators in facilitating continuity of care within the diagnostic phase for adult patients with lung cancer.

OBJECTIVE: The objective of this study was to explore the role of oncology nurse navigators (ONN) in facilitating continuity of care for adult lung cancer patients during the diagnostic phase of cancer care. DESIGN: A phenomenological approach was used and involved semi-structured patient interviews and an oncology nurse navigators' focus group. RESULTS: Eight individuals participated, including four adult patients with lung cancer and four oncology nurse navigators. Themes regarding the organizational functions of the ONN role in facilitating continuity of care were identified: patient-focused care, needs assessments, shared decision-making, accessibility, and eliminating barriers. CONCLUSION: Awareness of the organizational functions of the ONN role could be used to create core areas of practice within nursing training modules to provide consistent and patient-centred continuity of care.

Experiences of Newly Diagnosed Breast Cancer Patients in Turkey.

PURPOSE: The purpose of this qualitative study is to describe the experiences of women in Turkey during the diagnostic phase of breast cancer. DESIGN: In the research, the phenomenological approach was used. The data were collected through semistructured in-depth interviews. The sample comprised nine breast cancer patients in the diagnostic phase. RESULTS: The data were categorized into four themes: facing the breast cancer diagnosis, uncertainty, avoidance, and holding on to life. Women experience intense uncertainty about the disease, treatment, and social relationships and thus exhibit avoidance behavior. IMPLICATIONS: Nurses should be aware of psychosocial difficulties suffered during the diagnostic phase and provide care for patients. It is important that nurses provide information about the diagnostic phase to women with breast cancer and encourage them to ask questions and express their feelings.

Is global access to infertility care realistic? The Walking Egg Project.

Until very recently, the problem of infertility in developing countries has been ignored at all levels of healthcare management. Because many preventable or treatable diseases still claim millions of lives, and due to limited resources, provision of infertility care is not on the resource allocation agenda at all, prevention of sexually transmitted diseases remaining the number one priority. Tubal infertility due to sexually transmitted diseases, unsafe abortion and post-partum pelvic infections is the main cause of infertility. Most cases are only treatable with assisted reproduction technology, which are either unavailable or too costly. In December 2007, an expert meeting was organized in Arusha, Tanzania by the Walking Egg non-profit organization in co-operation with ESHRE. The meeting was the start of a global project aimed at increasing diagnostic and therapeutic options for childless couples in resource-poor countries. From the start, the Walking Egg Project has approached this problem in a multidisciplinary and global manner. It gathers medical, social, ethical, epidemiological, juridical and economic scientists to discuss and work together towards its goal. The final objective of the Walking Egg Project is the implementation of infertility services in many developing countries, preferably integrated in existing family planning and mother care services.

The Walking Egg Project: Universal access to infertility care - from dream to reality.

Childlessness and infertility care are neglected aspects of family planning in resource-poor countries, although the consequences of involuntary childlessness are much more dramatic and can create more wide ranging societal problems compared to Western societies, particularly for women. Because many families in developing countries completely depend on children for economic survival, childlessness has to be regarded as a social and public health issue and not only as an individual medical problem. In the Walking Egg Project we strive to raise awareness surrounding childlessness in resource-poor countries and to make infertility care in all its aspects, including assisted reproductive technologies, available and accessible for a much larger part of the world population. We hope to achieve this goal through innovation and research, advocacy and networking, training and capacity building and service delivery. The Walking Egg non-profit organization has chosen a holistic approach of reproductive health and therefore strengthening infertility care should go together with strengthening other aspects of family planning and mother care. Right from the start The Walking Project has approached the problem of infertility in a multidisciplinary and global manner. It gathers medical, social, ethical, epidemiological, juridical and economical scientists and experts along with artists and philosophers to discuss and work together towards its goal. We recently developed a simplified tWE lab IVF culture system with excellent results. According to our first cost calculation, the price of a single IVF cycle using the methodologies and protocols we described, seems to be less than 200 Euros. We realize that universal access to infertility care can only be achieved when good quality but affordable infertility care is linked to effective family planning and safe motherhood programmes. Only a global project with respect to sociocultural, ethical, economical and political differences can be successful.