Experience In Treatment Of Cancer Research Articles

Patients’ experiences of vulvar cancer diagnosis and treatment: results from a consumer-guided qualitative study

Patients’ experiences of vulvar cancer diagnosis and treatment: results from a consumer-guided qualitative study

Beyond Survival: A Scoping Review on the Sexual Health of Sexual and Gender Minority Women Following Curative Cancer Treatment.

To explore the existing research on sexual health experiences of sexual and gender minority women (SGMW) post-curative cancer treatment. This scoping review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. Four articles that focused on sexual health experiences of SGMW post-curative cancer treatment were included. Four themes were identified: (a) sexual function; (b) sexual orientation and gender identity, including disclosure and health care provider reactions; (c) relationship dynamics, such as relationship status and the quality of romantic relationships; and (d) body image. The findings underscore substantial challenges faced by SGMW cancer survivors in achieving optimal sexual well-being, impacting their access to post-treatment care. This study advocates for more expansive research efforts involving diverse participant cohorts, extending beyond breast cancer, to gain deeper insights into these critical issues.

Understanding Patient Experiences to Inform Future Studies to Optimize Personalization of Treatment for Early Breast Cancer.

Breast cancer treatment is multimodal, but not all patients benefit from each treatment, and many experience morbidities significantly impacting quality of life. There is increasing interest in tailoring breast cancer treatments to optimize oncological outcomes and reduce treatment burden, but it is vital that future trials focus on treatments that most impact patients. This study was designed to explore patient experiences of treatment to inform future research. An online survey was co-developed with patient advocates to explore respondents' experiences of breast cancer treatment. Questions included simple demographics, treatments received, and views regarding omitting treatments if that is deemed safe. The survey was circulated via social media and patient advocacy groups. Responses were summarized by using simple statistics; free text was analyzed thematically. Of the 235 participants completing the survey, 194 (82.6%) would choose to omit a specific treatment if safe to do so. The most commonly selected treatments were chemotherapy (n = 69, 35.6%) and endocrine therapy (n = 61, 31.4%) mainly due to side effects. Fewer respondents would choose to omit surgery (n = 40, 20.6%) or radiotherapy (n = 20, 10.3%). Several women commented that survival was their "absolute priority" and that high-quality evidence to support the safety of reducing treatment would be essential. Patients with breast cancer are individuals who may wish to optimize different components of their treatment. A portfolio of studies co-designed with patients is needed to establish an evidence base for greater treatment personalization with studies focused on reducing avoidable chemotherapy and endocrine therapy a priority.

Experience in surgical treatment of papillary thyroid cancer with spread to the trachea («window» and circular resection)

Compared to most malignant tumors, papillary thyroid cancer (PST) is associated with favorable survival and low recurrence rates. Prognostic factors for thyroid cancer include age, sex, tumor size, the presence of metastases in the lymph nodes of the neck, and the spread of the tumor beyond the thyroid capsule. Extrathyroid invasion of cancer into the trachea is a marker of more aggressive tumor behavior, determining a subpopulation of patients at greater risk of recurrence and death. The paper presents 2 cases of surgical treatment of advanced papillary thyroid cancer with ingrowth into the trachea. The performance of this or that type of surgery depends on the location and extent of the tumor invasion of this organ. In the first case, the socalled «window» tracheal resection was performed, in the second – circular resection with the imposition of an intertracheal anastomosis. This clinical case indicates the possibilities of using modern surgical techniques for locally advanced malignant thyroid tumors, which make it possible to achieve long-term remission of the disease.

The caregiver's experience of childhood cancer treatment in South Africa.

This study explored the treatment-related, financial and psychological experiences of caregivers during cancer treatment of their children in South Africa's (SA) public and private sectors. In this exploratory study, three focus groups were conducted with caregivers of children undergoing cancer treatment in SA's public healthcare sector. A fourth small focus group with two parents in the private sector was conducted online. A mixed-methods approach was employed using a combination of thematic analysis and grounded theory. Of the 20 public sector caregivers, many expressed frustration at the number of visits to primary healthcare clinics before being referred. Caregivers had difficulties coping with and accepting the diagnosis, alongside managing continued care for the child and other children at home. Support received by family and community members was varied. Financial strain was an important concern. The two private sector parents indicated greater levels of support and no financial hardship, but expressed similar levels of emotional stress. These caregiver experiences indicate that improvements are urgently needed in the recognition of childhood cancer symptoms at primary healthcare level in SA. They also highlight a need for increased financial support from government through social grants, travel allowances and nutritional support.

"We Need to Go Back Home (to) the Philippines Healthy": An Interpretive Phenomenological Analysis of Migrant Domestic Workers' Experiences of Having Breast Cancer in Hong Kong.

Diagnoses of breast cancer are continuing to increase in the Philippines, but little is known about incidence rates among the significant number of Filipino women working abroad as migrant domestic workers (MDWs). These women are often the main income providers for their families, and their ability to work depends upon their physical health and strength. In this article, we use interpretive phenomenological analysis to explore the experiences of 10 MDWs from the Philippines who were diagnosed with breast cancer during a period of employment in Hong Kong. Analysis of these narratives revealed numerous points at which their status as temporary, transnational migrant workers intersected with their experiences of breast cancer detection, diagnosis, and treatment. We argue that these women's experiences of breast cancer were shaped by the structures of migration that link the Philippines with host destinations like Hong Kong. These structures create a unique context in which these women had to constantly renegotiate their identities as migrants, financial providers, and breast cancer patients.

Patient perspectives on cancer care during COVID-19: A qualitative study.

The COVID-19 pandemic posed unique challenges to cancer-related care as health systems balanced competing risks of timely delivery of care and minimizing exposure to infection in a high-risk, immunocompromised patient population. This study aimed to better understand how pandemic-related factors affected the patient experience of cancer care during this time. We conducted fifteen semi-structured interviews with adults from rural counties in Maryland who were diagnosed with and/or actively treated for cancer at the TidalHealth healthcare network between January 2020 and October 2022. Interviews from fifteen participants were analyzed. Two major themes emerged including COVID Impact on Care, and COVID Impact on Mental Health. Subthemes under COVID Impact on Care include Staffing Shortages, Hospital Regulations, Visitation, Importance of Advocacy, and Telehealth Utilization, and subthemes under COVID Impact on Mental Health include Loneliness, Support Networks, and Perceptions of COVID and Personal Protection. Overall, participants described positive care experiences despite notable delays, disruptions to continuity of care, difficult transitions to telemedicine, visitation policies that limited patient support, increased mental health struggles related to social distancing measures, and greater desire for patient advocacy. Our findings reveal significant impacts of the COVID-19 pandemic on experiences of cancer treatment and survivorship in a more vulnerable, rural patient population with lower healthcare access and income level. Our findings suggest areas for targeted interventions to limit disruptions to quality care in future public health emergencies.

The Patient's perspective on radiation therapy for anal cancer: Evaluation of expectations and stigma.

Little is known regarding anal cancer patients' perspectives on undergoing radiation therapy. Additionally, the stigma surrounding anal cancer diagnosis warrants a better understanding of the barriers to complete disclosure in patient-healthcare team interactions. Included patients had squamous cell carcinoma of the anus treated with definitive chemoradiation (CRT) from 2009 to 2018. Survey questions were adapted from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and Discrimination and Stigma Scale. A total of 46 anal cancer patients who underwent CRT were surveyed, of which 72% responded. 73% of respondents indicated little to no pre-treatment knowledge of CRT. 70% reported overall short-term effects as worse than expected, most commonly with bowel habits (82%), energy (73%), and interest in sexual activity (64%). 39% reported overall long-term effects to be worse than expected, most commonly with changes to bowel habits (73%), sexual function (67%), and interest in sexual activity (58%). However, 94% agreed they were better off after treatment. Regarding stigma, a subset reported hiding their diagnosis (12%, 24%) and side effects (24%, 30%) from friends/family or work colleagues, respectively, and 15% indicating they stopped having close relationships due to concerns over stigma. Although patients' perceptions of the severity of short-term CRT side effects were worse than expectations, the vast majority agreed they were better off after treatment. Targeted counseling on common concerns may improve the anal cancer treatment experience. A notable subset reported stigma associated with treatment, warranting further evaluation to understand the impact on the patient experience.

Identifying gaps and challenges faced in lesbian, gay, bisexual, transgender, queer, intersex and asexual (LGBTQIA+) adolescent and young adults (AYA) cancer care: A scoping review.

100 Background: There is a dearth of evidence related to the needs and challenges faced by LGBTQIA+AYA cancer patients and survivors. This scoping review aims to summarize the existing literature about the challenges faced, the nature and currently available services provided for LGBTQIA+ AYA cancer patients and survivors. Methods: In February 2023, a systematic keyword search was conducted on PubMed and Embase. This included the terms, “AYA”, “Adolescent and Young Adults”, “Cancer”, “LGBTQIA+”, “Sexual and Gender Minorities”, “obstacles”, “biases” and “challenges”. The studies selected were screened for further relevant cited references. Papers exploring LGBTQIA+ AYA (ages 15-49) challenges and available services were selected. Exclusion criteria included studies that lacked AYA-specific results, or did not report on challenges/difficulties faced. Included studies were then thematically analyzed according to challenges, available services and help required. Qualitative analysis was subsequently performed. Results: A total of 202 studies were identified. We excluded 185 studies based on the exclusion criteria. 17 studies were included in this review. 7 challenges, 7 help service gaps and 3 available services were identified in LGBTQIA+ AYA cancer care. Major challenges reported include LGBTQIA+ inclusive understanding of psychosocial needs, depression/anxiety, disclosure of sexual and gender minority status to Healthcare Providers (HCPs) and the recognition of partners by HCPs. Deficient services included LGBTQIA+-specific support groups and cultural competence training amongst HCPs. Frameworks are currently being developed to enhance HCP-patient relationships and improve the inclusivity of marginalized LGBTQIA+ patients in the healthcare system. However, the exact available services were unreported or not specific to this population. Conclusions: This review underlined the lack of LGBTQIA+-AYA-specific evidence regarding challenges faced by patients and survivors. While domains relating to mental health outcomes are increasingly reported in the literature, others including identity formation, financial outcomes and fertility needs continue to be underreported. There is also an absence of research on Asian populations and less developed countries. Further research is required to understand and address these specific gaps and difficulties. This is necessary to provide holistic AYA care to improve compliance, and also ensure better cancer treatment and survivorship experiences.

Financial burden of men with localized prostate cancer: a process paper.

Many individuals undergoing cancer treatment experience substantial financial hardship, often referred to as financial toxicity (FT). Those undergoing prostate cancer treatment may experience FT and its impact can exacerbate disparate health outcomes. Localized prostate cancer treatment options include: radiation, surgery, and/or active surveillance. Quality of life tradeoffs and costs differ between treatment options. In this project, our aim was to quantify direct healthcare costs to support patients and clinicians as they discuss prostate cancer treatment options. We provide the transparent steps to estimate healthcare costs associated with treatment for localized prostate cancer among the privately insured population using a large claims dataset. To quantify the costs associated with their prostate cancer treatment, we used data from the Truven Health Analytics MarketScan Commercial Claims and Encounters, including MarketScan Medicaid, and peer reviewed literature. Strategies to estimate costs included: (1) identifying the problem, (2) engaging a multidisciplinary team, (3) reviewing the literature and identifying the database, (4) identifying outcomes, (5) defining the cohort, and (6) designing the analytic plan. The costs consist of patient, clinician, and system/facility costs, at 1-year, 3-years, and 5-years following diagnosis. We outline our specific strategies to estimate costs, including: defining complex research questions, defining the study population, defining initial prostate cancer treatment, linking facility and provider level related costs, and developing a shared understanding of definitions on our research team. Analyses are underway. We plan to include these costs in a prostate cancer patient decision aid alongside other clinical tradeoffs.

Pay attention to whole cycle management of pancreatic cancer

The prognosis for pancreatic cancer is extremely poor. To improve the prognosis of pancreatic cancer, it is urgently needed to improve early detection to advance treatment. And basically, it is also necessary to emphasise basic research to find novel therapies. By promoting the disease-centered multidisciplinary team model, researchers should achieve high-quality closed-loop process management of the entire life cycle which consists of prevention, screening, diagnosis, treatment, rehabilitation,and follow-up, with the objective of establishing a standard clinical process to improve the outcome in essence. This article summarized the progress of pancreatic cancer at different stages of the whole cycle management recently and shared the experience of pancreatic cancer treatment from the author's team in the past ten years.

Meeting actual benchmarks for short- and long-term outcomes after cytoreductive surgery for peritoneal surface malignancy at a newly established academic treatment center

BackgroundCytoreductive surgery with hyperthermic intraperitoneal chemotherapy is a curative treatment for selected patients with peritoneal surface malignancy. Reaching actual outcomes benchmarks is challenging given the complex nature of peritoneal surface malignancy surgery. The aim of this study was to assess how the benchmarks for morbidity and oncologic outcome can be reached at a newly established program for cytoreductive surgery and hyperthermic intraperitoneal chemotherapy. MethodsBuilding on existing institutional experience in complex abdominal surgery and interdisciplinary ovarian cancer treatment, a peritoneal surface malignancy center for cytoreductive surgery and hyperthermic intraperitoneal chemotherapy was established at the Medical University of Vienna using a structured mentoring process. This is a retrospective analysis of the first 100 consecutive patients. Morbidity and mortality were assessed using the Clavien-Dindo classification, and oncologic outcomes using overall survival. ResultsMajor morbidity and mortality were 26% and 3%, and median overall survival was 49.0 months. In patients with colorectal peritoneal metastases, the median overall survival was 35.1 months (all colorectal peritoneal metastases patients) and 48.8 months in the subgroup with Peritoneal Surface Disease Severity Score ≤3. No median overall survival could be calculated in patients with low-grade appendiceal mucinous neoplasms, appendiceal adenocarcinoma, or peritoneal mesothelioma due to >50% of patients being alive at the end of follow-up. ConclusionWe show that the current morbidity and oncological outcomes benchmarks can be reached within the first 100 cases of cytoreductive surgery and hyperthermic intraperitoneal chemotherapy at a newly established peritoneal surface malignancy center. Previous institutional experience in complex abdominal surgery and a structured mentoring process are key factors in achieving this goal.

When a nurse is the patient

A nurse’s personal cancer treatment experience prompts a protocol change.

Why Psychosocial Care Matters: Parent Preparedness and Understanding Predict Psychosocial Function When Children Return to School After Cancer.

Introduction: Psychosocial impacts of cancer are well-recognized for pediatric patients but few studies examine challenges specific to schooling after diagnosis and caregiver-related factors that may influence coping. This study describes caregiver experiences of school-related psychosocial functioning and how caregiver preparedness and understanding of these challenges influence coping. Methods: Caregivers of 175 childhood cancer survivors completed a nationally disseminated survey related to caregiver preparedness, clinician-provided education, and school-related experiences. Caregiver-reported preparedness and understanding were evaluated as predictors of psychosocial coping; factor analysis was performed to identify compound scales of preparedness and understanding. Results: Caregivers reported that the cancer treatment experience resulted in their children being more stressed and anxious about returning to school (60.2% and 70.2%, respectively) and more sensitive to peers (73.4%). It also made it harder for them to socialize and fit in with peers (58.2% and 49.7%, respectively). Caregiver preparedness and understanding predicted improved psychosocial coping with regard to child stress regarding socialization, fitting in, and anxiety but not sensitivity to peers. Teacher supportiveness and caregiver perception of clinician understanding also correlated with function. Discussion: Findings highlight the importance of caregiver education and preparedness as these reliably predict child psychosocial function and coping as they return to school after a cancer diagnosis and that all children are at risk for psychosocial challenges following a cancer diagnosis. Opportunities exist for clinicians to provide more education and anticipatory guidance to families as a potential means to reduce poor coping when a child returns to school following cancer.

The expectations of cancer treatment questionnaire and the experiences of cancer treatment questionnaire: Development and validation

Patients’ expectations of cancer treatment could impact on their treatment experiences. Research in this area tends to focus on a particular aspect of expectations, and no suitable measure exists to explore patients’ expectations and experiences of treatment. The current study developed and validated two new, matched, measures: The Expectations of Cancer Treatment Questionnaire (EXPECT-CTQ) and the Experiences of Cancer Treatment (EXPER-CTQ). Items were generated using the previous expectations literature, alongside findings from qualitative interviews, and refined with assistance from cancer patients and a wider pool of researchers. A sample of 200 cancer patients completed the measures, and factor analysis was performed to validate the EXPECT-CTQ, resulting in a 39-item measure with subscales assessing treatment efficacy, physical side-effects, psychological side-effects, and the impact of treatment on daily life, social life and self-care. The EXPER-CTQ was matched to the EXPECT-CTQ, excluding the treatment efficacy subscale, resulting in a 36-item measure. Reliability analyses were conducted on both measures with good results (α > 0.6). Analyses of the expectations-experiences relationship encompassing a broad range of expectations showed that expectations are positively associated with experiences of cancer treatment. These two new measures are suitable for use in future research exploring both expectations and experiences of treatment for cancer and the implications of gaps between these constructs.

Accompanying patients in clinical oncology teams: Reported activities and perceived effects.

Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE-Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informationaland educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical teamand themselves. A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patientsand on the clinical team. In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stressand become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. By mobilizing their experiential knowledge, APs provide emotional, informational, cognitiveand navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. Two patient-researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript.

Usefulness of structured teaching module in improving knowledge about cancer in Accredited Social Health Activist: A pilot study.

In India, the Accredited Social Health Activists (abbreviated as ASHA) are an important group of community health workers and are involved in initiating and maintaining health care programs in the rural communities they live. This study was conducted with a purpose to evaluate the effectiveness of a structured teaching module in improving knowledge on cancer cause, diagnosis, and treatment in the ASHA workers. This was a cross-sectional pretest posttest study and was conducted from April 2017 to February 2020 with ASHA workers working in the various Primary Health Centers in Udupi and South Kanara districts of Karnataka and Kasargod district of Kerala in India after obtaining the permission from the medical officer in charge of the respective primary health centers. The participants were briefed about the study objective and also that confidentiality will be maintained. A validated investigator developed questionnaire consisting of 20 questions categorized into four domains (general, subject, diagnosis, and treatment aspects) was distributed to the willing volunteers before the start of the program. They were instructed to fill the pretest form before and posttest after the teaching program. Informed content was taken in a separate sheet and volunteers were informed not to write any personal or identification details. Resource persons with experience in cancer cause, diagnosis and treatment delivered the structured talk in the local language Kannada. The data collected from the filled questionnaires were subjected to frequency, percentage, mean, and standard deviation and appropriately subjected to Chi-square test or paired t-test. A P < 0.05 was considered statistically significant. The demographic detail suggest that majority of the women were Hindus (79.3%), married (93.7%), between the age of 31-40 (46.7%) and had only matriculation as the highest education (68%). The analysis of the pretest administration collected before the start of teaching program indicates that most participants were aware of self-breast examination (79.74%) and that cancer is a disease as old as human civilization (70.26%), while only 8.82% were unaware of which is the leading type of cancer in rural women. The results analyzed from posttest indicate that the highest percentage change (323.96%) was observed for domain on treatment aspects followed by for general (64.03%), diagnosis (56.70%), and subject (36.42%) aspect and was significant (P < 0.001). The total mean values changed from 6.48 ± 2.01 in pretest to 11.81 ± 2.15 in posttest indicating an increase of 5.33 ± 1.91 and percentage change of 82.25% (P < 0.001). The results also showed that 60.8% had average, while 39.2% had good increment in the knowledge at the end of the program. The observations of the current study indicate the usefulness of the structured teaching module in improving knowledge on cancer cause, diagnosis and treatment in the ASHA workers. It is proposed that with further training ASHA workers can be very useful in the propagation of cancer awareness and screening in the community they serve.

One Voice Is Good, But More Is Better: Symptom and Toxicity Reporting in Pediatric Oncology.

One Voice Is Good, But More Is Better: Symptom and Toxicity Reporting in Pediatric Oncology.

Profiles of Symptom Suffering and Functioning in Children and Adolescents Receiving Chemotherapy.

Some children and adolescents receiving chemotherapy experience few symptom-related adverse events, whereas others experience multiple adverse events. If oncology nurses could identify patients likely to have pronounced chemotherapy-related adverse events, tailored supportive care could be matched to these patients' symptom burdens. The aim of this study was to identify symptom profiles in children and adolescents before and after chemotherapy, and the sociodemographic and psychological factors associated with profile classification and change. Participants ranging from 7 to 18 years (n = 436) completed 6 Patient-Reported Outcomes Measurement Information System pediatric symptom measures within 72 hours preceding (T1) and 1 to 2 weeks after (T2) chemotherapy. Profile membership and change were determined by latent profile/latent transition analyses. Associations with profiles and profile transitions were examined using multinomial logit models and logistic regression. Three symptom suffering profiles were identified at T1 and T2: high, medium, and low. The high symptom suffering profile included the fewest participants (T1, n = 70; T2, n = 55); the low symptom suffering profile included the most participants (T1, n = 200; T2, n = 207). Of the participants, 57% remained in the same profile from T1 to T2. Psychological stress was significantly associated with T1 and T2 profile classifications and profile transition; age was associated with profile classification at T1. Three symptom suffering profiles existed in a sample of pediatric patients undergoing chemotherapy, indicating that children and adolescents have differing cancer treatment experiences. Oncology nurses could screen pediatric oncology patients for their symptom suffering profile membership and subsequently prioritize care efforts for those with a high suffering profile.

The Role of the Quality of Relationship in Couples Facing Treatment for Breast Cancer: A Qualitative Italian Study.

Breast cancer is the leading cause of cancer death in women worldwide. Recently, the focus of research has shifted from psychiatric, psychological, and social consequences on the woman who gets sick from breast cancer to the impact on the couple. Indeed, the psychosocial perspective has developed the construct of the Quality of Relationship (QoR) that affects the quality of life of both members of the dyad. The aim of this study was to extend knowledge in this field by identifying and analyzing what dimensions of QoR may impact couples' psychosocial adjustment to breast cancer and related treatments. Semistructured interviews explored couples' experiences of breast cancer diagnosis and treatment. Transcripts were analyzed using inductive thematic analysis. Twelve couples were interviewed. Results showed how the dimensions of psychosocial support, dyadic coping, communication, and intimacy are associated and define the construct of QoR, thus affecting the couples' adjustment to breast cancer diagnosis and to the disease pathway. Assessment procedures of couple functioning since and after diagnosis could increase the appropriateness and benefits of integrating existing clinical practice in oncological settings.