Care delivery,patient experiences,and health outcomes among sexual and gender minority patients with cancer and survivors: A scoping review

Sexual and gender minorities (SGMs) face a disproportionate burden of cancer, yet little is known about the experiences and specific needs of these underserved populations in cancer care delivery. The authors conducted a scoping review to characterize the literature on cancer care delivery, health outcomes, and health care experiences for patients with cancer and survivors identifying as SGM. In total, 1176 peer-reviewed citations were identified after a systematic search of the PubMed/Medline, PsycInfo, Cumulative Index of Nursing and Allied Health Literature (CINAHL), and Web of Sciences databases without restriction on publication date. The details captured included study aims, design, population, cancer site, and main findings. Thirty-seven studies published from 1998 to 2017 met the study criteria. Most studies were conducted in the post-treatment survivorship phase of the continuum (n = 30), and breast cancer was the most common cancer site (n = 20). There were only 2 intervention studies. The studies reviewed were classified under the following areas of focus: 1) disclosure of sexual orientation and gender identity, 2) quality of care, 3) psychosocial impact of/ adjustment to cancer, 4) social support, 5) sexual functioning, and 6) health risks/health behavior. Very little research reported an assessment of gender minority status or included a focus on gender minorities (n = 7). This review revealed substantial research gaps given a lack of population-based data and small sample sizes, likely related to the absence of systematic collection of sexual orientation and gender identity information in the cancer care context. Deficient research in this area likely perpetuates health disparities. Further research is needed to identify and remove the barriers to delivering high-quality care to SGM individuals with cancer.     

The effect of communication skills training on patient outcomes in cancer care: a systematic review of the literature

UITTERHOEVE R.J., BENSING J.M., GROL R.P., DEMULDER P.H.M. (deceased) & VAN ACHTERBERG T. (2010) European Journal of Cancer Care
The effect of communication skills training on patient outcomes in cancer care: a systematic review of the literature The objective of this review was to determine whether communication training for healthcare professionals (HCP), including nurses and medical doctors, in cancer care improves patient outcomes. Eligible studies with a focus on patient outcomes and a controlled or single group pretest–posttest design were identified according to Cochrane Collaboration Guidelines. Seven studies, encompassing 10 papers and involving five randomised controlled trials, were included. Studies involved 411 HCP, including a total of 1677 encounters with adult cancer patients. Forty‐nine papers were excluded, primarily because no patient outcomes were reported. Regarding patient satisfaction outcomes, estimated effects in favour of communication training ranged from 0.07 (95% CI: ?0.30 to 0.44) for satisfaction with information and support to 0.70 (95% CI: 0.16 to 1.24) for satisfaction with assessment of concerns. No evidence was found for the effectiveness of communication training on patient distress outcomes. We concluded that the current review reveals inconclusive evidence to prove the effectiveness of communication training on patient satisfaction and patient distress. More high‐quality studies are needed.     

Health care experiences among women diagnosed with gestational breast cancer

Gestational breast cancer (GBC) presents many challenges for women and the clinicians who care for them. The aim of this study was to explore the health care experiences of women diagnosed with GBC to inform and improve clinical care of women in this predicament. Semi‐structured interviews were conducted with 17 women who had been diagnosed with GBC in the previous 5 years. The overarching themes for perceived quality of care were “communication” and “comprehensive care.” “Communication” had two sub themes: “interdisciplinary communication” (the way health professionals from different disciplines communicated with each other about the management of the woman's care) and “patient communication” (how they communicated this to the woman). The “comprehensive care” theme incorporated three sub themes: “the spirit” (psychological care); “the mind” (information provision); and “the body” (management of treatment side effects). Women's own accounts of positive and negative experiences of GBC care provide unique and specific insights which improve understanding of their concerns and needs. The findings can inform advances in quality and efficacy of clinical care; offer guidance for obstetricians, oncologists and allied health professionals about the needs of women diagnosed with GBC and how care can be optimised; and inform the development of resources to assist women and their families.     

Breast cancer patients’ narrative experiences about communication during the oncology care process: a qualitative study

To analyse the perception about the information and communication received to evaluate oncologic care of breast cancer patients in Spain. Qualitative study based on conducting in‐depth interviews. An inductive thematic analysis of the illness narratives was performed. Intentional theoretical sampling of 41 people diagnosed with breast cancer. The information provided during care process is assessed as appropriate, as it includes personalised skills focused on communication and considers organisational and contextual issues. In some cases, the information was considered partial, heterogeneous and at times contradictory, which revealed a lack of continuity. To provide and adequately cover information needs from the patient perspective, it is necessary to ensure access, both in its physical (material) and intellectual (comprehension) dimension, keeping in mind elements of social capital (social networks) and cultural capital (values, beliefs, non‐verbal language) that facilitate or hinder access. The current state of transition to a horizontal model in the doctor–patient relationship, could account for the difficulties, deficits and contradictions in communication and information that breast cancer patients perceive in many contexts.     

Lifestyle behaviours of young adult survivors of childhood cancer

This cross-sectional study collected baseline data on the health behaviours of a large population of survivors of childhood cancer in the UK, aged 18-30 years, compared with those of sex- and age-matched controls. Data from 178 young adult survivors of childhood cancer, diagnosed and treated at Bristol Children's Hospital, 184 peers from the survivors' GP practices and 67 siblings were collected by postal questionnaire. Conditional logistic regression analysis showed that, for matched sets of survivors and controls, survivors of a variety of childhood cancers reported lower levels of alcohol consumption (P=0.005), lower levels of cigarette smoking (P=0.027) and lower levels of recreational drug use (P=0.001) than controls. Analysis of matched sets of survivors and siblings showed similar trends but no significant differences. A health behaviour index for each participant was constructed from the data collected on five key health behaviours which influence future health status. Comparison of the means for each case group showed that survivors of childhood cancer were leading healthier lives than controls or siblings. This finding was expressed most clearly as the difference in the means of the health behaviour index for each case group, derived from five health behaviours (one-way ANOVA, P<0.001).     

The journey towards a cancer diagnosis: the experiences of people with cancer, their family and carers

This small-scale study aimed to provide an insight into the time between first noticing a symptom, attending a healthcare provider and obtaining a cancer diagnosis. Previous research showed that the pre-diagnostic moments on the illness trajectory were important to people with cancer and could influence levels of satisfaction with subsequent care. This article provides an overview of the qualitative component (phase 2) of a three-pronged study that involved a workshop, a literature review and focus groups and interviews with people affected by cancer. Results highlighted some of the difficulties encountered during the complex journey towards a diagnosis of cancer. These included fear of what might be found, communication of symptoms to healthcare practitioners, the influence of family on decisions to attend a primary care practitioner and the importance of a person's gender on perceptions of health-seeking behaviour. Results presented warrant further investigation and suggest the importance of viewing the 'cancer journey' as including the journey leading up to a diagnosis of cancer.     

Breast cancer care: women's experience

Medical treatments for breast cancer are undergoing rapid change. Studies of the management of breast cancer have investigated the psychosocial consequences of the diagnosis as expressed by the patients themselves, but infrequently relate these women's views directly to improvements in health care systems. The following study explores the experience of 18 women recently diagnosed as having breast cancer. The findings illustrate to both clinicians and managers the importance of considering a number of dimensions relevant to the psychosocial care of patients and suggest areas where health care systems may be modified to address the psychosocial needs of women. The results demonstrate the positive impact patient views can have on the development of health care services.     

Disparities in prostate cancer screening,diagnoses, management,and outcomes between Indigenous and non-Indigenous men in a universal health care system

Background

Indigenous Peoples have higher morbidity rates and lower life expectancies than non-Indigenous Canadians. Identification of disparities between Indigenous and non-Indigenous men regarding prostate cancer (PCa) screening, diagnoses, management, and outcomes was sought.

Methods

An observational cohort of men diagnosed with PCa between June 2014 and October 2022 was studied. Men were prospectively enrolled in the province-wide Alberta Prostate Cancer Research Initiative. The primary outcomes were tumor characteristics (stage, grade, and prostate-specific antigen [PSA]) at diagnosis. Secondary outcomes were PSA testing rates, time from diagnosis to treatment, treatment modality, and metastasis-free, cancer-specific, and overall survivals.

Results

Examination of 1,444,974 men for whom aggregate PSA testing data were available was performed. Men in Indigenous communities were less likely to have PSA testing performed than men outside of Indigenous communities (32 vs. 46 PSA tests per 100 men [aged 50–70 years] within 1 year; p < .001). Among 6049 men diagnosed with PCa, Indigenous men had higher risk disease characteristics: a higher proportion of Indigenous men had PSA ≥ 10 ng/mL (48% vs. 30%; p < .01), TNM stage ≥ T2 (65% vs. 47%; p < .01), and Gleason grade group ≥ 2 (79% vs. 64%; p < .01) compared to non-Indigenous men. With a median follow-up of 40 months (interquartile range, 25–65 months), Indigenous men were at higher risk of developing PCa metastases (hazard ratio, 2.3; 95% CI, 1.2–4.2; p < .01) than non-Indigenous men.

Conclusions

Despite receiving care in a universal health care system, Indigenous men were less likely to receive PSA testing and more likely to be diagnosed with aggressive tumors and develop PCa metastases than non-Indigenous men.     

The concept of cure in cancer care

The concept of cure is often used in health care practices without thought to the social, cultural and psychological implications of its meaning. Frequently measured in terms of years of disease-free survival, this measure is inadequate in evaluating treatment. Iatrogenic toxicities and illness implications may linger for many months or years after a person experiences cancer. The subcultural perspectives of cure for clinicians may be very different. Historically, the clinician's concept of cure has been the focus and reported outcome of cancer treatment and research. A more dynamic view is encouraged in exploring this concept in relation to the outcomes of nursing practice.