Chronic Diseases

Background: Patients and their caregivers are expected to take joint responsibility for reporting symptoms and seeking medical assistance, for example, by calling oncology emergency telephones or other helplines during a cancer trajectory. Research objective: The aim was to explore the meaning of responsibility as it appeared in patients’ or caregivers’ experiences of calling an oncological emergency telephone. Design, participants and context: Inspired by qualitative description and qualitative content analysis, a secondary analysis of data from interviews with 12 participants calling the (...) oncological emergency telephone at a Danish university hospital was performed. Ethical considerations: The project observes demands for safekeeping data and all regulations concerning research ethics in agreement with the Nordic Nurses Federation and the Danish Health Act. Findings: Two main themes emerged: (1) to act responsibly as a patient or caregiver was to ‘be watchful and alert’, ‘report symptoms the right way’ and ‘do crosschecking’ and (2) to deal with the burden of responsibility was to ‘feel safe when dealing with the burden of responsibility’ and ‘be relieved from the burden of responsibility’. Discussion: Too much responsibility and a potential imbalance between healthcare professionals’ expectations and callers’ knowledge and capacity to act may place additional burdens on the callers, which may be eased by person-centred care. Conclusion: The meaning of responsibility appeared in the participants’ capacity to act, where they observed, assessed and reported symptoms and controlled prescribed treatments as well as shared or handed over the responsibility to the healthcare providers. Thus, the analysis provided essential knowledge for healthcare professionals on how patients and caregivers handle this responsibility when faced with a cancer disease that is treated on an outpatient basis. (shrink)

Oncologists frequently have to break bad news to patients. Although they are not normally the ones who tell patients that they have cancer, they are the ones who have to tell patients that treatment is not working, and they are almost always the ones who have to tell them that they are going to die and that nothing more can be done to cure them. Perhaps the most difficult cases are those where further treatment is almost certainly futile, but there (...) remains an extremely slim chance of yet more aggressive treatment having a near-miraculous effect. In such situations, it can be difficult for the oncologist to decide how to explain things to the patient, and how much to tell them. It can also be very difficult to achieve the correct balance between respecting the patient's autonomy and not exposing them to harm. This paper examines an example of one such case and makes three suggestions. First, that respecting autonomy cannot be achieved by maximizing information sharing only to deny patients the chance to make decisions based on that information; second, that the simplistic application of the principles of non-maleficence and respect for autonomy can lead to erroneous conclusions about the most ethical course of action; and third, that there is an extra reason, in addition to respecting patients' autonomy, for attempting near-futile last-ditch interventions: when treating rare conditions, useful evidence can be generated that will benefit future patients. (shrink)

Minimal residual disease (MRD), a measure of residual cancer cells, is a concept increasingly employed in precision oncology, touted as a key predictive biomarker to guide treatment decisions. This paper critically analyzes the expanding role of MRD as a predictive biomarker in hematologic cancers. I outline the argument for MRD as a predictive biomarker, articulating its premises and the empirical conditions that must hold for them to be true. I show how these conditions, while met in paradigmatic cases of MRD (...) use in cancer, may not hold across other cancers where MRD is currently being applied, weakening the argument that MRD serves as an effective predictive biomarker across cancer medicine. (shrink)

In early 2023, national shortages of generic chemotherapies used to treat many common cancers forced many hospitals and clinics to allocate drugs in scarcity. Shortages of chemotherapies such as cisplatin and carboplatin are an acute example of an ongoing problem, with professional societies,1 media, policy-makers, regulators, and the Biden administration2 calling for action and relief. Shortages that affect patients with cancer are not unique to antineoplastic therapies; they have also been subject to clinically significant shortages of pressors,3 benzodiazepines,4 and antibiotics,5 (...) among others. Given the complexity of the problem and the long timeline toward solutions addressing supply chain, demand, and manufacturing challenges, chemotherapy shortages are likely to continue into the foreseeable future. Patients and oncologists will be faced with delays, waitlists, or suboptimal clinical options and outcomes. Resource shortages in oncology and medicine generally pose ethical issues for clinicians and their patients. Promoting values such as trust, resource stewardship, transparency, and equity is critical.6 The risk of increased cancer recurrence and death and the potential harms involved in therapeutic alternatives during severe shortages7 force clinicians and health care systems to decide which patients receive scarce medications and which do not, that is, explicit rationing. In this context, evidence-based care must also be maintained to the greatest extent possible. Insufficient support for developing and implementing fair rationing strategies to meet agreed-upon goals can perpetuate inequities in care, contribute to clinician distress, and lead to conflicts between and among clinicians and patients. To aid clinicians, ASCO has issued clinical recommendations and ethical principles for the development and implementation of allocation plans.8 This article expands on ASCO's guidance9 to move toward practical strategies for the ethical management of shortages. We begin with an overview of ethical frameworks for drug shortages to educate and inform oncologists. Then, we highlight the process and principles of multistakeholder deliberation in allocation planning and enactment. We conclude by touching on practical considerations for blending process strategies with allocation principles to develop a functional plan for oncology practices. ASCO's disease-site specific guidance documents can aid in technical implementation via evidence-based clinical approaches, with this document serving as a complement to the guidance provided therein. Planning ahead and developing a clear allocation strategy can obviate situations where individual oncologists are forced to choose between their patients (bedside rationing). It can also protect against bias and monitor for inequities. Specific allocation plans and priorities are likely to vary on the basis of the setting, the severity of the shortage, and the scarce drugs in question. Given this, the ethical and practical considerations sketched here do not constitute legal or medical determinations, nor do they imply statements of the standard of care. (shrink)

In response to cancer, patients may be thrown into precarious processes of remaking their purpose, identity, and connections to the world around them. Thoughtful and thorough responses to these issues can be supported by person-centered phenomenological approaches to caring for patients. The importance of perspectives on illness offered by theoretical phenomenology will become apparent through the example of the experience of nausea, or perhaps more accurately put—chemo sickness. The focus here is on how chemo sickness alters one's way of relating (...) to the world. I will examine the phenomenon of nausea through the lens of the phenomenological concept of mood—an existential feeling that engenders a diffused tone permeating through one's world and shapes the envisioned possibilities on one's horizon. (shrink)

Doctors’ strikes are legally permissible in the UK, with the situation differing in other countries. But are they morally permissible? Doug McConnell and Darren Mann have systematically attempted to dismiss the arguments for the moral impermissibility of doctors’ strikes and creatively attempted to provide further moral justification for them. Unfortunately for striking doctors, they fail to achieve this. Meanwhile, junior doctors’ strikes have continued in the UK through 2023 and have now extended into 2024. In this response, which focuses on (...) the UK situation and specifically junior doctors’ strikes in the National Health Service (NHS) in England, I will demonstrate a central problem with their arguments—namely that they underplay the harms caused by prolonged doctors’ strikes by ignoring the harms to patients with cancer. This weakens their conclusion that strikes are morally permissible in terms of the conditions and thresholds they set. I then provide a psychological critique of their justification for strikes in terms of the interests of the public. It follows that invoking the controversial concept of supererogatory action is ungrounded but also absurd when you consider time-critical cancer care. If those representing striking doctors wish to maintain a modicum of moral respectability, they should mitigate for patients with cancer and negotiate reasonably and with urgency. (shrink)

Sociological literature has explored how shifts in the point at which individuals may be designated as diseased impact upon experiences of ill health. Research has shown that experiences of being genetically “at risk” are shaped by and shape familial relations, coping strategies, and new forms of biosociality. Less is known about how living with genetic risk is negotiated in the everyday and over time, and the wider forms of identity, communities and care this involves. This article explores these arrangements drawing (...) on online bloggers’ accounts of Familial Adenomatous Polyposis (FAP). We show how accounts of genetic risk co-exist with more palpable experiences of FAP in everyday life, notably the consequences of prophylactic surgeries. We consider how the act of blogging represents but also constitutes everyday experiences of hereditary cancer syndrome as simultaneously ordinary and exceptional, and reflect on the implications of our analysis for understanding experiences of genetic cancer risk. (shrink)

The rise of precision medicine represents a challenge for pathology, which must now more closely link research and diagnostic and collaborate on new bases with other specialties. Our paper is based on the study of four French cancer centers invested in developing precision medicine. Molecular biology is particularly threatening for pathologists in settings where medical oncologists and biologists believe that the discipline is capable of presiding over if not altogether replacing morphology as the principal basis for diagnosis. However, we will (...) show that the organizational arrangements for circulating tumor specimens and producing diagnoses, as well as the place occupied by pathologists in these arrangements, have varied from place to place and over time. These configurations are the result of preexisting arrangements and local negotiations among professionals, where the aim is rather to include and coordinate specialties within the production line rather than exclude them from the jurisdictional remit. (shrink)

This paper examines the emerging field of molecular oncology, in which targeted treatments are sought for patients who have exhausted standard cancer therapies. Drawing on an ethnographic study at a U.S. academic medical center, and building on recent theoretical work examining potentiality as a site where expectations, meaning and value are produced, I describe efforts to translate genetic information into extended life for patients. Clinicians, patients and families performed various types of largely-unrecognized labor that invested precision medicine with potential even (...) when life-prolonging therapies remained elusive. Their future-making work was enabled and constrained by the structural conditions of U.S. health care. In this context potentiality was a generative force that was harnessed to the interests and inequities of a market-driven health system, raising important questions about who is able to participate in, contribute to, and benefit from emerging innovations and narratives of hope. (shrink)

Cambrosio et al. (2018. “Extending Experimentation: Oncology’s Fading Boundary Between Research and Care.” New Genetics and Society 37 (3): 207–226) argue that “experimental care” in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018–2019 study of experimental breast cancer care in an urban clinical setting in the light of two other studies in the same hospital group: in the same cancer service (2013–14) and, prompted (...) by these earlier findings, an interview study in HIV services (2014–15). We found that patients and staff anticipated better outcomes by treating sub-types of breast cancer but they also hoped for a better one-size-fits-all approach, akin to the antiretroviral treatments introduced for HIV and explored in our interview study. We conclude that the promise of targeted treatment for sub-types of disease – variously described as experimental care, personalised, precision, stratified and sub-group medicine – is accompanied by hopes for a single, standard, effective approach. (shrink)

Objective: Hashimoto’s thyroiditis is the most common autoimmune thyroid disease. Papillary thyroid cancer is the most common thyroid cancer. Whether Hashimoto’s thyroiditis is a predisposing factor for papillary thyroid cancer remains unclear. In this study, the frequency of papillary thyroid cancer was investigated in patients with Hashimoto’s thyroiditis who underwent total thyroidectomy. -/- Methods: In this study, 534 patients were screened retrospectively. Preoperative thyroid function tests, anti-thyroid antibodies, ultrasonography findings, fine-needle aspiration biopsies, and thyroidectomy pathology results were examined. According to (...) the pathology, 139 patients had Hashimoto’s thyroiditis. Patients with Hashimoto’s thyroiditis (group 1) and non-Hashimoto’s thyroiditis (group 2) were compared. -/- Results: Papillary thyroid cancer was found in 70 patients (50.4%) in group 1 and 156 patients (39.5%) in group 2 (P=.026). The odds ratio was 1.59 (95% CI; 1.07-2.34). There was no difference for sex, age, tumor size, microcarcinoma–macrocarcinoma distribution, subtype, number of tumor focus, lymph node metastasis, vessel invasion, and extrathyroidal spread. -/- Conclusion: We found more papillary thyroid cancer and less capsular invasion in patients with Hashimoto’s thyroiditis, but we did not find any differences between groups in terms of age, gender, tumor size, vascular invasion, and metastasis. According to these findings, Hashimoto’s thyroiditis may be a risk factor for papillary thyroid cancer. (shrink)

Children with HIV are dependent on taking continuous medication and care, and family preparation is required when disclosing HIV. This study aimed to unveil families’ experiences with HIV disclosure to children under 13 years old. Eight family members who have disclosed HIV to seropositive children were interviewed in‐depth and individually. The fieldwork took place at a public paediatric outpatient hospital in Rio de Janeiro. The results showed that the family members’ discourse highlighted two ways of knowing their own condition and (...) disclosing the condition of the children with HIV. First, they needed to address the communication of bad news and discover their own HIV status through their children's disease. Second, the disclosure was a process constituted by four stages: preparing for disclosure, identifying the time, deciding how and where to tell, and instilling silence after disclosure. They also recognized that nurses had a role in the process as part of an interprofessional team. Nurses can develop advocacy care and empower family members in the preparation of safe HIV disclosure. By systematizing and institutionalizing the care advocacy process, nurses may enable caretakers and children to participate in their therapeutic management, improving adherence to the treatment and self‐care with autonomy. (shrink)

Since its initial publication in 2018, Professor Anya Plutynski’s Explaining Cancer: Finding Order in Disorder has garnered a great deal of accolades.1 In 2021, The London School of Economics and Political Science conferred Professor Plutynski the Lakatos Award, recognizing the book’s significant contribution to the philosophy of science. On the heels of its recent reissuing as a paperback, it is an ideal time to revisit this remarkable work.

In lieu of an abstract, here is a brief excerpt of the content:A Chance to CutBruce H. CampbellMy gloved hand reaches for progressively sharper surgical instruments. The prior radiation therapy and recurrent cancer [End Page E3] have made his neck tissues as stiff and hard as an old block of wood; everything appears too dull and feels too dry under the bright operating room lights. I push, dissect, urge, divide, prod, and spread with little effect.The nursing staff keeps to its (...) routine—completing computer entries, retrieving supplies, counting sponges—only intermittently aware that things are not going well at the point of attack. Nondescript music plays softly and the anesthesia machine continues to emit its gentle sounds. The junior resident—assisting me with the first of many neck dissections she will see during her five years of training—grips the retractor as she has been told and dabs the wound periodically to clear any blood or fluid.I glance up to recheck the CT scan. It confirms that this man’s recurrent cancer is just below the next layer of neck muscles. There are also some large blood vessels and major nerves nearby. I am confident, though, that I will be able to expose the mass, protect all of the critical structures, and safely remove the cancer.Curing cancer with surgery is no small feat, mind you. Cancer is, after all, a molecular disease not easily confined to an obvious lump, even though we sometimes refer to a malignant mass being “like a walnut” or “as hard and round as a marble.” The actual disease rests deep inside each cancer cell where the genetic code—the DNA—makes mistake–after–mistake. If cancer is to be cured with a surgical procedure, the surgeon must remove every last cell that is capable of making the same nonsensical, life–threatening error. Given Science’s rudimentary knowledge of cancer cell dynamics and signaling, it’s a miracle that surgery ever works. Yet, we continue to try. And we succeed just often enough to keep on trying.I rearrange the retractors and alter my approach. My mentors would have known what to do next, I imagine. My training included time well–spent with brilliant and technically–gifted surgeons. How would they have approached this case? Their experience and instincts might have told them to open the wound more widely, work the lateral and deep margins first, or position the instruments differently.Perhaps, one of my mentors would have attacked this man’s tumor using the same approach I am attempting but would have known exactly where to exploit some area of weakness that I cannot locate. A few swift, confident moves and he would have held the mass in his hands. “That’s it. We’re done,” he would have said.I met this patient several months ago when his cancer was first discovered and have seen him throughout his course of treatment. Recently, his daughter had accompanied him to the office to review his options. “Treatment has been rugged, Doc,” he reminded me. “The cancer’s still there and they said I can’t get any more radiation. Chemo would only prolong things. I don’t really want surgery, but what choice do I have if I want to be cured?”“Supportive care is an option, but the only curative approach is surgery.”“Well, I’m not ready to quit yet, Doc. I got grand-kids, y’know. I want to watch them grow up.” He nodded to his daughter. “I’m in charge of spoiling her little boys.”The daughter smiled. We crowded around the computer screen to look at the scans. I showed them how the tumor was invading and destroying surrounding structures. I described the surgery and the risks.“There are many things I will not know about your tumor until we are actually in the operating room,” I explained. Surgery in the setting of recurrent disease involves a series of on–the–spot decisions and course corrections. The odds of success are unknowable. “Sometimes, the only way to find out if we can remove the cancer is simply to try.”He took a deep breath and looked at his daughter. “Well then, Doc, if surgery is the only... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A New Graduate Nurse’s StoryJill MountI was taking pre–med courses on the west coast when my mother was diagnosed with acute leukemia. I immediately finished out my classes, packed up my bags and cat and moved back to the town on the east coast where my parents lived. While my mother was fighting the leukemia, I spent many hours in her hospital room and I learned more about the (...) roles of doctors and nurses. Unlike what I had seen on television, where the doctors were always nearby and available to their patients, my mother’s doctors were seldom present. It was the nurses who spent the most time with my mother in the hospital. I wanted to care and be present for my patients like her nurses. So I decided to become a nurse. I didn’t realize that not all cancer units were like my mother’s where the nurses had time to really care for their patients.My mother’s attending doctor would visit her bedside once a day. The doctor would generally stand a few feet away from the foot of my mother’s bed and describe my mother’s latest blood counts. The doctor always seemed to keep her distance at the foot of the bed. As my mother’s series of chemotherapy treatments failed to put her in remission, the doctor would describe the next chemotherapy protocol that my mother would endure. My mother wanted desperately to live and she would keep copies of the blood counts her doctor provided her and would insist on trying the next round of chemotherapy, despite the list of grim side effects each seemed to come with. The doctor generally stayed an average of five minutes during these visits.My mother’s nurses, however, were a constant presence. I had not realized at the time that people are hospitalized primarily for nursing care. My mother was assigned several great nurses, who not only took her vital signs and administered her medications, but who seemed to care about her as a person as well. The nurses seemed to understand how difficult it was for my mother, a very independent person, not to have control over her health. To help her regain control, they provided her with guided visualizations. This was during the mid–eighties so they had her visualize her immune system as Pac–man eating all the cancer cells. My mother liked this because when she did the Pac– man visualizations, she felt she had some control directing her immune system to fight the disease.The nurses also provided my mother with emotional support. We were not a very physically affectionate family and the nurses encouraged us to give my mother hugs when she was not at risk for infections. They also gave her lots of back rubs. One of the nurses gave my mother a relaxation audiotape, which she listened to for hours, others provided her with poetry books. I believe it was partly the nurses’ physical and emotional care that enabled my mother to live as long and to fight the cancer for as long as she did. During the course of my mother’s illness, she received five rounds of chemotherapy over a period of ten months. Unfortunately her efforts to combat the cancer were unsuccessful and she died of complications of the disease and from the cumulative toxic side effects of the chemotherapy.After observing all the ways the nurses cared for my mother, I decided this was what I wanted to do and I decided to go to nursing school instead of medical school. I was able to apply my pre–med prerequisite courses to an accelerated nursing program [End Page E16] and I graduated with my bachelors in nursing after 18 months of nursing school.My nursing program emphasized the importance of viewing the patient as a whole person and not merely viewing them in terms of a particular disease or condition. Nursing school also reinforced how important nurse caring was for patients. I remember one of our exam questions focused on caring. The question was about a nurse walking into a patient’s room and finding the patient... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Dying is DifficultClarice DouilleHayden had been a constant in my life since I was eight, as our families were close. He was a single dad who loved to talk and always had a smile on his face. He was obsessed with anything related to his kids and attended every school activity or sporting event.In 2015, Hayden was diagnosed with stage III colon cancer. He was adamant that he didn't (...) want to share any information about his condition with his kids, waiting several months until the eve of his first surgery before breaking the news to them. Hayden made the operation seem trivial and underplayed the severity of the chemotherapy treatments that would follow. Despite whatever he was feeling, he seemed committed to maintaining his happy demeanor, which was probably an effort to convince himself and others to feel better about the situation.Hayden survived his first operation and rounds of chemotherapy. And, over the next several years, he chose to undergo a regimen of additional aggressive treatments, submitting to surgery after surgery, as well as several more rounds of chemotherapy, followed by radiation treatments. I was already working as a home care aide, and because of the close relationship between our families, Hayden asked me to help as his caregiver, including running errands and babysitting for his younger kids. Hayden made it clear that he wanted his kids to remain ignorant of the progression of his condition so that they wouldn't worry and become anxious. It seemed he was motivated by his desire to preserve his young kids' happiness and innocence. In hindsight, I think this prevented his kids from being able to fully savor moments with their dad or prepare for the possibility of his death. I also think Hayden was trying to shelter himself from his own fear of mortality. And it was this fear that made Hayden a "difficult patient."Hayden suffered both physically and mentally, not only from his disease and treatment but also from his fear of mortality. I noticed how he tried to hide his suffering by shutting himself in his bedroom and making excuses when he wasn't eating. He often forgot to take his medications; he refused to use pill boxes and objected to reminders from others. The consequences often meant additional hospitalizations. I wish more palliative options had been introduced to him earlier in his disease course. I believe a palliative care team would have encouraged Hayden to think about and discuss death, helped him change his outlook for treatment and living with cancer, and most importantly, enabled him to better enjoy the remainder of his life with his kids.Nevertheless, I understood why Hayden was worried about his kids, and I could see how his recent personal experiences since his initial diagnosis might have contributed to his choice for the most aggressive treatments: his sister and both his parents had died, leaving no other relatives to care for his kids. He wanted to be there for his kids, yet the side effects of treatment made him so sick that he couldn't leave his bed. He couldn't even do the very activities that made him want to live.Hayden was an extremely social person, but when he found out his cancer was terminal, he [End Page E6] isolated himself from his loved ones for nearly six weeks. Even though I was likely the only person he was communicating with, as the person who helped him and his family, I often didn't see him for weeks at a time. He would text me requests, leave money on the front table, and ask me to drop off the items I purchased and then leave. Hayden's kids continued their daily routines, despite comments from them about his absence.In early August 2020, Hayden was admitted to the hospital. His doctor called the kids at home and told them that their dad would immediately be enrolled in hospice care. They were, as one might expect, shocked at this news. They knew their dad was sick and had been dealing with his cancer for years. But Hayden's health deteriorated slowly, and the kids hadn't known... (shrink)

Lung cancer is a serious and deadly disease that affects the lungs, which are responsible for taking in oxygen and expelling carbon dioxide from the body. The disease can develop in any part of the lungs and is usually caused by smoking or exposure to certain chemicals. The main Objective: of this expert system is to provide an accurate diagnosis of lung cancer and the appropriate treatment options. In this paper, Methods: we present the design and implementation of an expert (...) system that can assist physicians in diagnosing lung cancer and determining the best course of treatment. The system provides an overview of the disease, its causes, symptoms, diagnosis, and treatment, along with relevant medical information. Results: The system was developed using the Clips expert system language and evaluated by medical professionals who found it to be an effective tool for diagnosing and treating lung cancer. Conclusion: The proposed expert system has the potential to improve patient outcomes and reduce healthcare costs associated with the treatment of lung cancer. (shrink)

Canguilhem’s take on the normal and the pathological offers an interesting insight to elaborate on a phenomenological account of illness and the medical encounter within the scope of Heidegger’s Daseinanalysis from Being and Time. Fredrik Svenaeus has drawn from the latter a definition of illness as an “unhomelike being in the world”. In this paper, I will elaborate on these concepts through the tale of Adriana, a cancer fighter that got diagnosed at age 26. Through her story, I will try (...) to illustrate Canguilhem’s main criticism against medicine's current state, as well as describe phenomenologically what it means to be ill, and what illness does to the patient's being-in-the-world. (shrink)

Shortages of generic, injectable chemotherapeutics have been increasing in prevalence since 2006. Due to the lack of access to first-line, lifesaving treatments, physicians have been forced to ration chemotherapy between patients. Although the scarcity has been managed with good intentions, it has been done in an ad hoc manner, without the benefit of an ethically grounded and standardized schema. Using an approach based on the “accountability for reasonableness” method by Daniel and Sabin, I establish a framework and protocol for rationing (...) that is specific to chemotherapy. Prior to the state of true shortage, I present guidelines for the use of an adequate supply of chemotherapy with knowledge of upcoming scarcity. Within the rationing framework itself, I first prioritize emergency use of chemotherapeutics and those already receiving treatment at the time of shortage. I advocate for stratifying patients based on the prognostic indicators of their cancer type, using a combination of clinical-trial-based initial response and longer term survival, followed by the patients’ line of treatment. All patients who are not able to receive their “best” treatment must receive a sequent, next-best treatment, and their treatment team must have the ability to appeal to a rationing committee in special circumstances. I reject the ideas of stratification based on the intention of the treatment, perceived quality of life, pre-existing condition not impacting performance status, the classical “sickest first” argument, and giving preference to pediatric cases. Lastly, I advocate for any system of rationing to be transparent to those it affects and acknowledge the difficulties it presents to patients and physicians alike. (shrink)

It has not been established how to assess children’s and adolescents’ decision-making capacity (DMC) and there has been little discussion on the way their decision-making (DM). The purpose of this study was to examine actual situation and factors related to difficulties in explaining their disease to adolescent cancer patients or obtaining informed consent (IC). The cross-sectional questionnaire survey was conducted. Physicians who have been treating adolescent cancer patients for at least five years answered a self-administered questionnaire uniquely developed about clinical (...) difficulties in explaining, IC and factors related patient’s refusal of medical treatment (RMT). Descriptive statistics for each item and a polychoric correlation analysis of the problems and factors related to the explanation were conducted. As a result, fifty-six physicians were participated (rate of return: 39%). Explaining the disease and treatment to patients (83.9%), IC to patients (80.4%), and explaining the disease and treatment to parents (78.6%) was particularly problematic. Difficulties to provide support related with patient’s refusal of medical treatment and to explain disease and treatment for patient and parents were related to difficulties obtaining IC for the patient. Conclusion: There are clinically difficult to explain for the patient or parents and to obtain IC for the patient. It is necessary to establish a disease acceptance assessment tool for the adolescence generation so that it can be applied in the field. (shrink)

Cancer biologists ascribe normal functions to parts of cancer. Normal functions are activities that parts of systems are in some minimal sense supposed to perform. Cancer biologists’ finding normality within the abnormality of cancer pose difficulties for two main approaches to normal function. One approach claims that normal functions are activities that parts are selected for. However, some parts of cancers that have normal functions aren’t selected to perform them. The other approach claims that normal functions are part-activities typical for (...) the system and that contribute to survival/reproduction. However, cancers are too heterogeneous to establish what’s typical across a type. (shrink)

In recent years, the biomedical field has witnessed the emergence of novel tools and modelling techniques driven by the rise of the so-called Big Data. In this paper, we address the issue of predictability in biomedical Big Data models of cancer patients, with the aim of determining the extent to which computationally driven predictions can be implemented by medical doctors in their clinical practice. We show that for a specific class of approaches, called k-Nearest Neighbour algorithms, the ability to draw (...) predictive inferences relies on a geometrical, or topological, notion of similarity encoded in a well-defined metric, which determines how close the characteristics of distinct patients are on average. We then discuss the conditions under which the relevant models can yield reliable and trustworthy predictive outcomes. (shrink)

Cancer biology features the ascription of normal functions to parts of cancers. At least some ascriptions of function in cancer biology track local normality of parts within the global abnormality of the aberration to which those parts belong. That is, cancer biologists identify as functions activities that, in some sense, parts of cancers are supposed to perform, despite cancers themselves having no purpose. The present paper provides a theory to accommodate these normal function ascriptions—I call it the Modeling Account of (...) Normal Function (MA). MA comprises two claims. First, normal functions are activities whose performance by the function-bearing part contributes to the self-maintenance of the whole system and, thereby, results in the continued presence of that part. Second, MA holds that models of system-level activities that are (partly) constitutive of self-maintenance are improved by including a representation of the relevant function-bearing part and by making reference to the activity/activities that part performs which contribute(s) to those system-level activities. I contrast MA with two other accounts that seek to explicate the ascription of normal functions in biology, namely, the organizational account and the selected effects account. Both struggle to extend to cancer biology. However, I offer ecumenical readings which allow them to recover some ascriptions of normal function to parts of cancers. So, though I contend that MA excels in this respect, the purpose of this paper is served if it provides materials for bridging the gap between cancer biology, philosophy of cancer, and the literature on function. (shrink)

Background and Objectives: Spiritual health is essential in human adaptation and relaxation, especially in chronic diseases. Cancer among human beings causes a physical and psychological crisis. Therefore, this study aimed to investigate the relationship between spiritual health and anxiety and depression in patients with gastrointestinal cancer. Methods: This research is a correlational cross-sectional study. The samples included 207 patients with gastrointestinal cancer. The study was conducted in Shahid Beheshti Educational and Medical Center in Qom City, Iran, in 2020. The research (...) method was convenience sampling. A demographic questionnaire, Paloutzian, and Ellison spiritual health questionnaire, and hospital anxiety and depression questionnaire were used in this research. Data were analyzed using descriptive statistics, Chi-square test, t-test, and analysis of variance (ANOVA) with SPSS software, v. 22. Results: The Mean±SD value of patients’ spiritual health was 94.47±12.56, and the Mean±SD value of their spiritual and existential health was 48.10±6.96 and 46.6±36.49, respectively. 53.62% of the samples had moderate spiritual health, 30.91% had high spiritual health, and 15.45% had low spiritual health. Also, 52.65% of the samples had moderate depression, 31.4% had mild depression, and 15.14% had severe depression. 54.58% had moderate anxiety, 28.98% had mild anxiety, and 16.42% had severe anxiety. The study results showed a correlation between spiritual health and anxiety and depression in patients with cancer (P<0.001). Conclusion: The results showed that patients with good spiritual health consequently suffered less depression and anxiety. Therefore, spiritual health can reduce the stress and anxiety of patients with cancer and ultimately help patients recover. (shrink)

There is a lot of conceptual engineering going on in medical research. I substantiate this claim with two examples, the medical debate about cancer classification and about obesity as a disease I also argue that the proper target of conceptual engineering in medical research are experts’ conceptions. These are explicitly written down in documents and guidelines, and they bear on research and policies. In the second part of the chapter, I propose an externalist framework in which conceptions have both the (...) explanatory power of psychological concepts and that of semantic concepts. It is likely, however, that human activities and practices distinct from medical research, and regulated by different practices and epistemic rules, call for different targets for conceptual engineering. I conclude with indicating an open agenda of problems for philosophers of medicine interested in conceptual engineering. (shrink)

Recent years have seen an emergence of the field of comparative cancer genomics. However, the advancements in this field are held back by the hesitation to use knowledge obtained from human studies to study cancer in other animals, and vice versa. Since cancer is an ancient disease that arose with multicellularity, oncogenes and tumour‐suppressor genes are amongst the oldest gene classes, shared by most animal species. Acknowledging that other animals are, in terms of cancer genetics, ecology, and evolution, rather similar (...) to humans, creates huge potential for advancing the fields of human and animal oncology, but also biodiversity conservation. Also see the video abstract here: https://youtu.be/UFqyMx5HETY. (shrink)

ArgumentIn August of 1977, Australian pathologist David W. Buntine delivered a presentation at the Annual Meeting of the Royal College of Pathologists of Australia in Melbourne, Victoria. In this presentation, he used the diagnostic category of “Eskimoma,” to describe a unique set of salivary gland tumors he had observed over the past five years within Winnipeg’s Health Sciences Center. Only found amongst Inuit patients, these tumors were said to have unique histological, clinical, and epidemiological features and were unlike any other (...) disease category that had ever been encountered before. To understand where this nosological category came from, and its long-term impact, this paper traces the historical trajectory of the “Eskimoma.” In addition to discussing the methods and infrastructures that were essential to making the idea of Inuit cancer “visible,” to the pathologist, the epidemiologist, and to society at large, this paper discusses how Inuit tissue samples obtained, stored, and analyzed in Winnipeg, Manitoba, came to be codified into a new, racially based disease category – one that has guided Canadian and international understandings of circumpolar cancer trends and shaped northern healthcare service delivery for the past sixty years. (shrink)

Background: Doctors should disclose the diagnosis to patients according to the principle of autonomy. However, not disclosing the diagnosis and prognosis to cancer patients remains common in mainland China. Objective: The study explored the experiences and attitudes of patients with cancer, family members, and the medical staff in truth-telling. Research design: A quantitative survey with three closed-ended questionnaires was conducted. Participants: In all, 137 patients with cancer, 134 family members caring for cancer cases, and 54 medical staff were surveyed. Descriptive (...) statistics were used to summarize all characteristics, and the chi-square test was performed to analyze group differences in attitudes toward cancer disclosure. Ethical considerations: This study was approved by the Committee on Ethics of Biomedicine Research, at the Second Military Medical University (HJEC-2018-YF-001). Informed consent was obtained from all participants prior to study commencement. Findings: A total of 59.8% of patients were informed about their diagnosis within 1 week, and 19.7% inferred theirs. The medical staff preferred to prioritize family members in informing about patient diagnosis while 77.4% of patients preferred to be told the whole truth at the time of initial diagnosis. More patients than family members and medical staff wanted the patients to be informed about the diagnosis ( p < 0.001). A significant difference was found between the patients and family members regarding who should tell the patients. Discussion: The willingness of patients in knowing the truth was underestimated by their family members as well as the medical staff. Guessing the truth indirectly may exert negative effects on the patients, and not telling the truth is inappropriate in patients who want to be informed. Conclusion: Disclosure of a cancer diagnosis is a complex process involving medical practice, as well as a range of cultural, ethical, and legal factors. The medical staff should first assess each patient’s willingness in truth-telling and inform about disease diagnosis with respect. Emotional support and comfort from family members are encouraged. Anyone in the patient’s care team, especially nurses, could be integrated in the process of truth-telling. (shrink)

BackgroundCaregivers may play a fundamental role in the clinical pathway of cancer patients. They provide emotional, informational, and functional support as well as practical assistance, and they might help mediate the interaction and communication with the oncologists when care options are discussed, or decisions are made. Little is known about the impact of dyadic dynamics on patient-doctor communication, patient's satisfaction, or adherence to the therapies. This study protocol aims to evaluate the efficacy of a psychological support intervention on patients-caregivers relationship (...) and their alignment in the treatment decision-making process and estimate related improvement in patient' compliance/adherence to treatments.MethodsA total of 102 patients-caregivers' dyads will be involved, among breast and prostate cancer patients. The study entails a pre- post- evaluation through psychological questionnaires, with a randomization of participants in two conditions, the experimental one in which subjects participate in a psychological support consultation, and the control one, where dyads do not receive any intervention. A follow up after 6 months from the enrollment is planned.DiscussionA positive impact of the psychological support intervention on patients' anxiety, depression, distress, and perceived social support is expected. Such improvements can directly affect patients' satisfaction and adherence to treatments. Data gathered from this study may inform health care providers, policy makers, and public health managers about the importance of caregiver's involvement in the cancer care pathway, and the best way to manage it. A further impact is to develop a specific intervention protocol to support caregivers' involvement in cancer care pathway, improve patient's wellbeing, the interaction with physicians and the compliance with the cancer treatment. (shrink)

ObjectivePreviously Mindfulness-Based Swinging Technique 's immediate efficacy for overcoming psychological concerns has recently received empirical support, yet its longer-term efficacy needed to be evaluated among women with breast cancer. The objective of this study was to assess and report the efficacy of MBST intervention among breast cancer patients for hopelessness, anxiety, depression, self-efficacy, oxygen intensity, and heart rate-beats per minute at an 8-week period.MethodThe State-Trait Anxiety Inventory, The Emotion Thermometer, Hospital Anxiety and Depression Scale, Self-Efficacy for Managing Chronic Disease, and (...) Beck's Hopelessness Scale were used for assessing the intervention's outcome; 149 BC patients were randomly assigned into two groups. The participants in the control group received Cognitive Behavioural Therapy -Cognitive-Disputation for 20 min, and intervention group received MBST intervention. No additional psychological interventions were given between week-1 and week-8.ResultOutcomes of the 8-week post-treatment follow-up exhibited significantly higher improvements in all evaluated-measurements for CG, and some for IG with large effect size in the following: anxiety and depression levels. It increased self-efficacy for managing disease and hopefulness, and saturation levels measured by pulse-meter/oximeter.ConclusionsBoth CBT-CD and MBST have been found to be efficacious interventions to shorten the psychotherapy duration for reducing clinical anxiety and hopelessness as well as increase self-efficacy for BC women. This may have a distinct clinical importance for supporting BC patient's adherence-to-treatment since CBT-CD could be an alternative technique to MBST as a brief intervention. In future studies, the effectiveness of MBST through adapting to virtual reality and other online delivery methods should be examined. (shrink)

Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy—as a right and as an ideal—we (...) describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so. (shrink)

IntroductionWe aimed to study post-traumatic stress disorder symptoms in breast cancer patients during the coronavirus disease pandemic.Materials and methodsWe included BC patients receiving medical treatment during the first COVID-19 lockdown in France. PTSD symptoms were evaluated using the Impact of Event Scale-Revised questionnaire. Quality of life [Functional Assessment of Cancer Therapy-General ], cognitive complaints [Functional Assessment of Cancer Therapy–Cognitive Function ], insomnia [Insomnia Severity Index ], and psychosocial experiences during lockdown were also evaluated. Multivariable logistic regression was used to identify (...) clinical factors and psychosocial factors associated with PTSD symptoms.ResultsAmong the 253 included BC patients, 46% had metastatic cancer and 52% were treated by chemotherapy alone. COVID-19-induced adjustments in medical oncology practices were experienced by 27% of patients. No case of COVID-19 was reported; 23% of BC patients had PTSD symptoms. Compared to other patients, patients with PTSD symptoms had more fears relative to COVID-19 infection, had more feeling of isolation, and had more prescription or increased use of psychotropic drugs. In the multivariable model adjusted for clinical factors, fears relative to COVID-19 and increased use of psychotropic drugs were independently associated with PTSD symptoms. Besides, patients with PTSD symptoms had poor quality of life, and more cognitive complaints and insomnia.ConclusionPost-traumatic stress disorder symptoms were observed in 23% of BC patients during the first COVID-19 lockdown in France. Psychological supports are needed for patients treated during the COVID-19 pandemic. (shrink)

Cancer is a disease that affects large numbers of people from all walks of life.Diagnosis of cancer induces fear both in the individual and in families, and isfrequently viewed as death sentence. Itsprevention, diagnosis and treatment poses a myriad of challenges particulary in developing countries such as Zimbabwe. This study employed monthly time series data on Esophageal Cancer cases at Gweru Provincial Hospital from Janaury 2010 to December 2019, in order to predict EC cases over the period January 2020 to (...) December 2021. The ANN model was applied. Residual analysis of this model indicated that it was indeed stable and thus suitable for predicting EC cases at GPH over the out-of-sample period. The results of the study indicate that EC cases will generally rise over the out-ofsample period; characterised by possible seasonal peaks in the month of November each year. Amongst other recommendations, the study suggested the need for prioritizing proper diets and healthy lifestyles as a preventive measure against EC. (shrink)

Improvements in the treatment of pediatric cancers, including malignant brain tumours, has resulted in more children surviving this illness well into their adolescent and adult years. It is widely known that survivors of brain tumours often experience long-term side effects of cancer treatments and/or the disease itself. These long-term effects often impact the survivor’s physical, psychological, or social wellbeing and can present significant challenges for the individual as well as for their family. Research on the experience of parents following treatment (...) for their child’s malignant brain tumour is more limited, despite many parents being a central caregiver and source of support in the survivor’s life. The goal of this hermeneutic inquiry was to better understand parents’ experiences of having a child survive a malignant pediatric brain tumour, how interactions with the health care system have shaped the child and family’s experience, and how the survivorship experience can be improved for patients and their families. Semi-structured interviews were conducted with the parents of seven pediatric brain tumour survivors to inform understanding of the topic. Data were analyzed in hermeneutic research tradition, as influenced by the philosophical hermeneutics of Hans-Georg Gadamer. Findings revealed that, survivorship was an enduring event and one that defined many aspects of parents’ lives, including daily routines and plans for the future, parents struggled to achieve a balance between independence and dependence, especially for survivors who were more severely affected by cognitive, psychosocial, and emotional side effects, survivors and parents felt left behind by multiple systems including health care and education, as well as by peers and in other relationships, parents experienced a repetitive, cyclical nature to survivorship, described as being “frozen in time,” and survivorship was a period of time wrought by emotion, with guilt, regret, and remorse being highlighted. For parents of PBTS, survivorship is highly complex, emotional, and cannot be navigated in isolation. It is expected that the in-depth understanding of parents’ experiences provided through the written interpretations in this study will lead to future research with families of PBTS and for other related populations and contexts. (shrink)

Background and AimPsycho-oncology is a cross-disciplinary and collaborative sub-specialty of oncology that focuses on the psychological, behavioral, ethical, and social aspects of cancer in clinical settings. The aim of this bibliometric study was to analyze and characterize the research productivity and trends in psycho-oncology between 1980 and 2021.MethodologyIn May 2022, the Scopus® database was searched for psycho-oncology-related publications using predetermined search keywords with specific restrictions. Lotka’s law was applied to check the authors’ productivity, while Bradford’s law was used to assess (...) the core journals in this field. The data was analyzed for different bibliometric indicators in the Biblioshiny package, an RStudio tool for bibliometric analysis.ResultsThe initial search resulted in a total of 2,906 publications. Of which, 1,832 publications were included in the final analysis, published between 1980 and 2021. The analyzed publications were written by 7,363 authors from 74 countries and published in 490 journals. There has been a significant increase in psycho-oncology-related publications after 2010. The most productive year was 2021. The annual scientific growth rate was found to be 13.9%. The most relevant leading author in terms of publications was Luigi Grassi from the University of Ferrara, Italy. Lotka’s law found that the number of authors declined as the number of papers written increased. The core journals were Psycho-Oncology, Supportive Care in Cancer, and Journal of Psychosocial Oncology. The most frequently used author’s keywords other than searching keywords were cancer, oncology, quality of life, depression, and anxiety. Recent psycho-oncology-related topics included mental health, COVID-19 infection in humans, people, pandemic, and tumor. The University of Sydney was the top-ranked institution. The leading country in terms of publications, citations, corresponding author country, and international collaboration was the United States of America. The United States had the strongest collaboration with Australia and Canada.ConclusionThe research hotspots include mental health conditions and interventions in cancer patients. We identified international collaboration and research expenditure to be strongly associated with psycho-oncology research productivity. Researchers’ collaboration, which is visible among developed countries, should be extended to low-income countries in order to expand psycho-oncology-related research and understanding. (shrink)

"The author tells a history of the study of cancer-causing viruses from the early twentieth century to the development of an HPV vaccine for cervical cancer in 2006. He profiles the "cancer virus hunters" who made breakthroughs in tumor virology"--.

BackgroundAt the start of 2021, oncologists lacked the necessary scientific knowledge to adapt their clinical practices optimally when faced with cancer patients refusing or reluctant to be vaccinated against COVID-19, despite the marked vulnerability of these patients to severe, and even fatal forms of this new viral infectious disease. Oncologists at Foch Hospital were confronted with this phenomenon, which was observed worldwide, in both the general population and the population of cancer patients.MethodsBetween April and November 2021, the Ethics and Oncology (...) Departments of Foch Hospital decided to investigate this subject, through an empirical and interdisciplinary study in bioethics. Our scientific objective was to try to identify and resolve the principal bio-ethical issues, with a view to improving clinical practices in oncology during future major pandemics of this kind, from a highly specific bio-ethical standpoint. We used a mainly qualitative methodological approach based on questionnaires and interviews.ResultsIn April 2021, 29 cancer patients refused or were reluctant to be vaccinated. Seventeen of these patients said that making vaccination mandatory would have helped them to accept vaccination. In October 2021, only 10 cancer patients continued to maintain their refusal. One of the main reasons for the decrease in refusals was probably the introduction of the “pass sanitaire” in July 2021, which rendered vaccination indispensable for many activities. However, even this was not sufficient to convince these 10 cancer patients.ConclusionWe identified a key bio-ethical issue, which we then tried to resolve: vaccination policy. We characterized a major tension between “the recommendation of anti-COVID-19 vaccination” and “free will”, and the duty to “protect each other”. Mandatory vaccination, at least in France, could resolve this tension, with positive effects on quality of life, or survival, in cancer patients initially refusing or reluctant to be vaccinated, but only if collective and individual scales are clearly distinguished. (shrink)

ObjectiveThe study aimed to assess the level of disease acceptance as well as the wellbeing and emotions that accompany cancer patients during the COVID-19 pandemic.Materials and MethodsThe study involved 1,000 patients of the oncology centers. The following questionnaires were used for the study: WHO-5–Well-Being Index, BDI–Beck Depression Inventory, disease acceptance scale, and proprietary multiple-choice questions regarding the impact of the epidemic situation on the respondents’ lives so far. The questionnaire study was conducted twice: in March-October 2020 and March-October 2021. The (...) differences between the given periods were statistically analyzed.ResultsAt the time of the study, the respondents felt mainly anxiety related to the possibility of contracting COVID-19, the possibility of infecting a loved one, or staying in quarantine. Anxiety was also caused by the vision of poorer access to health services. Along with the duration of the epidemic, the acceptance of neoplastic disease has decreased and the incidence of depressive symptoms has increased.ConclusionThe wellbeing of the respondents deteriorated significantly during the pandemic. The respondents, in their daily functioning, were mainly accompanied by anxiety. The risk of depression has increased and the acceptance of the disease has decreased significantly. (shrink)

The emotional experience and the type of communication about cancer within the family are important factors for successful coping with pediatric oncology. The main purpose is to study mother’s and children’s emotional experiences concerning cancer, whether they communicate openly about the disease, and relationships between the type of communication and the different emotions expressed by the children. Fifty-two cancer patients aged 6–14 years and their mothers were interviewed in separate sessions about the two central themes of the study: emotional experiences (...) and type of communication. Analyses of response categories were performed to subsequently compare the age-groups and the mother–child responses. According to the results, mothers expressed emotions such as fear, sadness, or anxiety, while children report sadness, pain, but also happiness. Significant positive correlations were observed between mothers’ sadness and older children’s sadness, mothers’ anxiety and children’s fear, and mothers’ anxiety and children’s happiness. Regarding communication type, mothers tend to hide information about the disease from younger children and to provide direct information to the older children. Children usually prefer to communicate their concerns to parents; however, children whose mothers convey anxiety are more likely to prefer to communicate with others. These results support the idea that parents should talk honestly with their children, explaining their illness in an age-appropriate way, and encouraging them to share their emotional experiences. Further studies are needed from a developmental perspective to understand the disease management of children and families. (shrink)

ContextColon cancer is the 3rd most common cancer in the world. The diagnosis leads the patient and his relatives into a process of mourning for their health and previous life. The literature highlights the impact of the disease on couples. Cancer can either alter or strengthen the relationship. The disease will directly or indirectly affect both partners. Such impact starts with the diagnosis and lasts long after treatments. No study has analyzed both emotional and sexual interactions between partners throughout the (...) illness so far.ObjectiveThis research aims to identify and describe whether congruence within couples tends to improve emotional and sexual adjustment.MethodThirteen couples took part in this research by answering a set of questionnaires investigating, in particular, dyadic coping strategies, marital and sexual satisfaction. Non-parametric analyses were performed on the quantitative data.ResultsEmotional satisfaction is good among the couples in our study. There are important similarities in partners’ emotional adjustment. Patients who are most satisfied with their couple typically have a partner who is also satisfied. This was an expected result based on the literature. Overall, sexual satisfaction is described as average, which is either related to a low frequency of sexual intercourse, or a gap between the ideal and actual frequency of intercourse. In terms of dyadic coping, similarities within couples tend to improve emotional and sexual adjustment. Couples in which communication about stress between the patient and their partner is congruent tend to report good marital satisfaction. We found the same results for delegated coping of both the patient and the partner, and for negative coping of the partner. Sexual adjustment is linked to a similar perception within the couple of a common dyadic coping.ConclusionEmotional and sexual adjustment is largely linked to the quality of the partner’s support. The congruence of couple support strategies has been identified as an important factor in emotional satisfaction. In addition, the more couples implement joint stress management, the better their sexual satisfaction. (shrink)

ObjectiveHormone positive breast cancer patients bear side effects of endocrine therapy and that may be related to depression and anxiety. We sought to find an association between mental health and side effects of endocrine therapy.MethodsA total of 398 patients participated. Sociodemographic, disease profile, and side effects questionnaires were administered. We screened for depressive and anxiety disorders by using the SDS and SAS.ResultsThe prevalence of depression and anxiety in our study were 33.4% and 13.3%, respectively. Depression was linked to education level, (...) night sweats, vaginal dryness, and fatigue ; anxiety was associated with education level, time to diagnosis, osteopenia, loss of hair, and fatigue. A stratified analysis according to age was performed as an exploratory. None of factor-age interactions was statistically significant.ConclusionSide effects of endocrine therapy were significantly associated with anxiety and depression. Side effects deserve greater emphasis and clinical interventions are needed to reduce anxiety and depression in breast cancer patients accepting ET. (shrink)

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence (...) of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

Objective:Prior research examining sexual and intimacy concerns among metastatic breast cancer patients and their intimate partners is limited. In this qualitative study, we explored MBC patients’ and partners’ experiences of sexual and intimacy-related changes and concerns, coping efforts, and information needs and intervention preferences, with a focus on identifying how the context of MBC shapes these experiences.Methods:We conducted 3 focus groups with partnered patients with MBC [N = 12; M age = 50.2; 92% White; 8% Black] and 6 interviews with (...) intimate partners [M age = 47.3; 83% White; 17% Black]. Participants were recruited through the Fox Chase Cancer Center Tumor Registry and the Cancer Support Community. Qualitative data were analyzed using the Framework Method and Dedoose software.Results:Qualitative analyses revealed several key themes reflecting ways in which MBC shapes experiences of sex/intimacy: the heavy disease/treatment burden leads to significant, long-term sexual concerns and consequent heightened emotional distress for both patients and partners ; viewing the relationship as having “an expiration date” influences patients’ and partners’ concerns related to sex/intimacy and complicates coping efforts; and information needs extend beyond managing sexual side effects to include emotional aspects of intimacy and the added strain of the life-limiting nature of the disease on the relationship. The heightened severity of sexual concerns faced by patients with MBC, compounded by the terminal nature of the disease, may place patients and partners at risk for significant adverse emotional and interpersonal consequences.Conclusion:Findings suggest unique ways in which sex and intimate relationships change after a diagnosis of metastatic breast cancer from both patients’ and partners’ perspectives. Consideration of the substantial physical and emotional burden of MBC and the broader context of the relationship and intimacy overall is important when developing a sexuality-focused intervention in this population. Addressing sexual concerns is a critical part of cancer care with important implications for patients’ health and quality of life. (shrink)

The coronavirus disease 2019 pandemic had a negative psychological impact on the population at scale, yet it is possible that vulnerable patient populations may experience a heavier burden with increased feelings of anxiety and distress. Cancer patients have to trade-off between the fear of exposing themselves to the virus and the need to continue life-saving medical procedures. The present study investigated the prevalence of generalized anxiety and post-traumatic stress symptoms in a population of Italian cancer patients and healthy participants in (...) the months following the COVID-19 outbreak. Using standardized measures of PTSS and generalized anxiety, we found that patients experienced higher levels of adverse mental health outcomes. Several variables were found to negatively affect PTSS and anxiety in this population, including the younger age of respondents, having children, and the impossibility to attend regular medical check-ups. These findings stress the importance of maintaining a clear and regular communication with patients throughout future waves of the pandemic and ensure continuity of care in this vulnerable population. Furthermore, this study indicates the need to establish psychological interventions aimed at patients with cancer, targeting especially younger generations who are more likely to experience adverse psychological outcomes. (shrink)

IntroductionThe aim of the present study is to carry out a multidimensional analysis on the relation between satisfaction with social support received, resilience and optimism in cancer patients and their quality of life.Materials and MethodsData were gathered through questionnaires fulfilled by 142 cancer patients. Data relate to sociodemographic, health, quality of life, social support, resilience and optimism.ResultsSatisfaction with the sources and types of support, resilience and optimism relates positively with quality of life. Predictive models show that informational support from friends (...) is the variable that most increases patients’ general health, while emotional support from the partner is the one that best improves how patients cope with the disease. In the same line, emotional support from the partner, together with informational support from family are the ones that most contribute to reduce patients’ symptoms. Resilience improves general health and functioning, and reduces symptoms. Patients’ optimism and resilience also reduce symptoms. Gender differences were found, with females showing lower quality of life than males, mainly in how they cope with cancer. Patients in the stage of treatment showed lower quality of life and higher symptoms. Such increase was observed in patients who received hormonotherapy or chemotherapy.DiscussionImportant practical implications can be drawn from results, which could help improve cancer patients’ quality of life through intervention strategies aimed at increasing their resilience, optimism and the social support provided by their closer sources. (shrink)

BackgroundParents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: investigating the acceptability and usability of the information booklet, determining parental information needs, and collating suggestions for implementation. Finally, we adapted the booklet according to the (...) findings.MethodsWe interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis.Results Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. Following dimensions were identified as information needs: communication, support offers, children’s disease understanding and needs, organization of family life, competence in parenting, and sources of additional information material. The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings.ConclusionIndicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated. (shrink)

Theories of embodied cognition hypothesize interdependencies between psychological well-being and physical posture. The purpose of this study was to assess the feasibility of objectively measuring posture, and to explore the relationship between posture and affect and other patient centered outcomes in breast cancer survivors with persistent postsurgical pain over a 12-week course of therapeutic Qigong mind-body training. Twenty-one BCS with PPSP attended group Qigong training. Clinical outcomes were pain, fatigue, self-esteem, anxiety, depression, stress and exercise self-efficacy. Posture outcomes were vertical (...) spine and vertical head angles in the sagittal plane, measured with a 3D motion capture system in three conditions: eyes open, eyes open relaxed and eyes closed. Assessments were made before and after the Qigong training. The association between categorical variables was measured by Cramer’s V. In the EO condition, most participants who improved in fatigue and anxiety scales also had better vertical head values. For the EOR condition, a moderate correlation was observed between changes in vertical head angle and changes in fatigue scale. In the EC condition, most of the participants who improved in measures of fatigue also improved vertical head angle. Additionally, pain severity decreased while vertical spine angle improved. These preliminary findings support that emotion and other patient centered outcomes should be considered within an embodied framework, and that Qigong may be a promising intervention for addressing biopsychosocially complex interventions such as PPSP in BCSs. (shrink)

BackgroundThe impact of a cancer diagnosis may be traumatic, depending on the psychological resources used by patients. Appropriate coping strategies are related to better adaptation to the disease, with coping flexibility, corresponding to the ability to replace ineffective coping strategies, demonstrated to be highly related with self-efficacy to handle trauma. The Perceived Ability to Cope with Trauma scale is a self-rated questionnaire that assesses the perceived ability to cope with potentially traumatic events, providing a measure of coping flexibility. The current (...) study aimed at examining the psychometric properties of the PACT Scale in Portuguese patients with breast cancer.MethodsThe study included 172 patients recently diagnosed with early breast cancer. Participants completed a Portuguese version of the PACT scale, and instruments of self-efficacy for coping with cancer, of quality of life, and of psychological distress that were used as convergent and divergent measures, thus assessing construct validity. A confirmatory factor analysis was performed to test the factor structure of the Portuguese version of PACT scale and reliabilities were examined.ResultsResults from the CFA confirmed the two-factor structure, consistent with the original Forward and Trauma focus subscales. The two subscales demonstrated high internal consistencies. Convergent and divergent validities were confirmed: the PACT scale was related to high self-efficacy to cope with cancer, to high perceived quality of life, and to low psychological distress.DiscussionOverall, the current results support and replicate the psychometric properties of the PACT scale. The scale was found to be a valid and reliable self-reported measure to assess Portuguese breast cancer patients regarding beliefs about their capabilities in managing the potentially traumatic sequelae of cancer. The PACT is a simple and brief measure of coping flexibility to trauma, with potential relevance for application in clinical and research settings. (shrink)

IntroductionThe present study aims at analysing how social support received and provided by parents of children, adolescents and young adults (AYA) diagnosed with cancer, as well as their sociodemographic and clinical variables, affect those parents’ stress levels and life and family satisfaction.Materials and MethodsA total of 112 parents of children and AYAs who had been diagnosed with cancer and who received treatment in Malaga participated in the study. In the study, participated all parents who voluntarily agreed to fulfil the questionnaire. (...) The main inclusion criterion was that their child had cancer. Instruments used were Questionnaire on the Frequency of and Satisfaction with Social Support (QFSSS), Paediatric Inventory for Parents (PIP), Life Satisfaction Scale and Family Satisfaction Scale.ResultsIn the mean difference analyses, male parents showed 3.38 (SD = 0.56) in social support received and female parents showedM = 3.08 (SD = 0.72). Conversely, in social support provided, female parents showed 3.22 and male parents showedM = 3.55 (p = 0.020). Significant differences were also found in family satisfaction, where female parents (M = 3.64) feel more satisfied than male parents (M = 3.06;p = 0.027). Parents of children aged between 0 and 14 years (M = 3.06) feel more stress than those parents of children aged 15–21 (M = 2.61;p = 0.021). The correlation analysis shows that there is a negative and significant relation between stress levels experienced by parents when facing different situations related to the child’s disease and both types of support, receivedr = −0.411,p < 0.001 and providedr = −0.282,p < 0.01. There is also a positive and significant relation between life satisfaction and social support receivedr = 0.292,p < 0.01, and social support providedr = 0.409,p < 0.001. There is a positive and significant relation between family satisfaction and social support receivedr = 0.330,p < 0.01, in the same way as with social support providedr = 0.222,p < 0.05. The regression analysis related to stress levels of parents indicates that social support received predicts levels of stress significantlyp < 0.001, with the variable of number of children being the one that showed to be significantp < 0.05. Social support provided showed the most significant resultsp = 0.001, meaning that social support provided increased life satisfaction. Social support received explains family satisfaction (p = 0.50), as it increases the family satisfaction of parents of children with cancer.DiscussionAnalysing social support received and provided, as well as sociodemographic and clinical variables, allowed us to broaden the knowledge on the effect social support has on stress levels, life satisfaction and family satisfaction in parents of children and AYAs diagnosed with cancer. This may have relevant practical implications for the design of interventions that would improve parents’ lives. (shrink)