Family caregivers’ perspectives on communication with cancer care providers

Abstract

Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers’ perspectives on communication with oncology care providers.

Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N?=?63).

Participants: Participants were family caregivers of adult patients with cancer. Most were patients’ spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment.

Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers’ experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers.

Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals’ experiences beyond their prescribed roles of “cancer patient” and “caregiver.”

Implications for Psychosocial Oncology Practice: Psychosocial oncology providers’ strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers’ potentially different communication preferences.     

Which dimensions of health-related quality of life are altered in patients attending the different gynecologic oncology health care settings?

BACKGROUND: We evaluated the feasibility of measuring health-related quality of life (HRQOL) in a gynecologic oncology clinic by using an instrument that is nonspecific for cancer patients. Our aim was to study whether the HRQOL perception of cancer patients differed from general population norms for the same age and gender and if it varied across cancer type, cancer status, age, health care setting, and reason for the encounter. METHODS: Participants in this study included 115 women between the ages of 21 and 83 years who were referred to a university hospital for ovarian, endometrial, and cervical carcinoma. They completed the SF-36 questionnaire. Mean results for the entire sample, for different disease status (primary vs. progressive/recurrent disease), and reason for encounter (surgery, preoperative, postoperative, palliative chemotherapy, and follow-up) were compared with age-specific expected mean values for each SF-36 scale, based on published Italian reference values for the healthy population. RESULTS: Patients' attitude to the questionnaire was generally good. Mean values on the SF-36 scales varied. Role (Physical and Emotional) scales showed the highest differences from the expected age-specific values in all situations. Patients with primary disease showed little or no differences for the other six scales from the expected values, whereas a significant 10-point mean decrease in every SF-36 scale was recorded for patients with progressive/recurrent disease. A biologic interaction among cervical carcinoma, age, and disease status was found in multivariate models, showing worst scores for patients with progressive/recurrent cervical carcinoma on almost all scales. CONCLUSIONS: Administration of generic HRQOL questionnaires in specialist health care delivery settings is feasible and well accepted and may help physicians and nurses to look beyond "what's wrong" in their patients.     

Initial care and outcome of glioblastoma multiforme patients in 2 diverse health care scenarios in Brazil: does public versus private health care matter?

Background

The aim of this study was to describe the epidemiological and survival features of patients with glioblastoma multiforme treated in 2 health care scenarios—public and private—in Brazil.

Methods

We retrospectively analyzed clinical, treatment, and outcome characteristics of glioblastoma multiforme patients from 2003 to 2011 at 2 institutions.

Results

The median age of the 171 patients (117 public and 54 private) was 59.3 years (range, 18–84). The median survival for patients treated in private institutions was 17.4 months (95% confidence interval, 11.1–23.7) compared with 7.1 months (95% confidence interval, 3.8–10.4) for patients treated in public institutions (P < .001). The time from the first symptom to surgery was longer in the public setting (median of 64 days for the public hospital and 31 days for the private institution; P = .003). The patients at the private hospital received radiotherapy concurrent with chemotherapy in 59.3% of cases; at the public hospital, only 21.4% (P < .001). Despite these differences, the institution of treatment was not found to be an independent predictor of outcome (hazard ratio, 1.675; 95% confidence interval, 0.951–2.949; P = .074). The Karnofsky performance status and any additional treatment after surgery were predictors of survival. A hazard ratio of 0.010 (95% confidence interval, 0.003–0.033; P < .001) was observed for gross total tumor resection followed by radiotherapy concurrent with chemotherapy.

Conclusions

Despite obvious disparities between the hospitals, the medical assistance scenario was not an independent predictor of survival. However, survival was directly influenced by additional treatment after surgery. Therefore, increasing access to resources in developing countries like Brazil is critical.     

Medical oncology patients’ preferences with regard to health care: development of a patient-driven questionnaire

BackgroundTo improve quality of care for cancer patients, it is important to have an insight on the patient's view on health care and on their specific wishes, needs and preferences, without restriction and without influence of researchers and health care providers. The aim of this study was to develop a questionnaire assessing medical oncology patients’ preferences for health care based on their own input.Patients and methodsItems were generated using 10 focus group interviews with 51 cancer patients. A preliminary questionnaire was handed out to 681 patients of seven Dutch departments of medical oncology. Explorative factor analysis was carried out on the 386 returned questionnaires (response 57%).ResultsFocus group interviews resulted in a preliminary questionnaire containing 136 items. Explorative factor analysis resulted in a definitive questionnaire containing 123 items (21 scales and eight single items). Patients rated expertise, safety, performance and attitude of physicians and nurses as the most important issues in cancer care.ConclusionThis questionnaire may be used to assess preferences of cancer patients and to come to a tailored approach of health care that meets patients’ wishes and needs.     

China’s landscape in oncology drug research:perspectives from research collaboration networks

Objective:Better understanding of China’s landscape in oncology drug research is of great significance for discovering anti-cancer drugs in future.This article differs from previous stuthes by focusing on Chinese oncology drug research communities in co-publication networks at the institutional level.Moreover,this research aims to explore structures and behaviors of relevant research units by thematic community analysis and to address policy recommendations.Methods:This research used social network analysis to define an institutions network and to identify a community network which is characterized by thematic content.Results:A total of 675 sample articles from 2008 through 2012 were retrieved from the Science Citation Index Expanded(SCIE) database of Web of Science,and top institutions and institutional pairs are highlighted for further discussion.Meanwhile,this study revealed that institutions based in the Chinese mainland are located in a relatively central position,Taiwan’s institutions are closely assembled on the side,and Hong Kong’s units located in the middle of the Chinese mainland’s and Taiwan’s.Spatial division and institutional hierarchy are still critical barriers to research collaboration in the field of anti-cancer drugs in China.In addition,the communities focusing on hot research areas show the higher nodal degree,whereas communities giving more attention to rare research subjects are relatively marginalized to the periphery of network.Conclusions:This paper offers policy recommendations to accelerate cross-regional cooperation,such as through developing information technology and increasing investment.The brokers should focus more on outreach to other institutions.Finally,participation in topics of common interest is conducive to improved efficiency in research and development(R&D) resource allocation.     

Is emotional dissonance more prevalent in oncology care? Emotion work,burnout and coping

Objectives: Emotional burden on oncology care workers is considerable. These workers develop confidential relationship with the patient through interpersonal communication, which entails managing their own emotions as well as the emotions displayed by their patients, and it involves a great deal of emotion work. The objectives in our study were to assess the prevalence of burnout and emotional dissonance and to investigate the interrelationship among burnout, emotion work and coping in oncology care. Method: A cross‐sectional survey with anonymous questionnaires was conducted among oncology health care workers (N = 48) and non‐oncology health care workers (N = 151). Results: The comparison revealed differences primarily in emotion work and coping. Emotional dissonance as stress factor was more prevalent among oncology health care workers. Caregivers dealing with cancer patients felt that they have to display negative emotions less frequently, yet at the same time they frequently have to show understanding and express sympathy to the patient. When certain coping strategies were examined, we found that humour as potential resource in coping is used less frequently among oncology health care workers. Conclusion: In order to devise effective interventions to oncology personnel, we need to focus on the interaction between the carer and the cancer patient and have more evidence on emotional dissonance in oncology staff. Copyright © 2009 John Wiley & Sons, Ltd.     

Adolescent and young adult oncology—past,present, and future

There are nearly 70,000 new cancer diagnoses made annually in adolescents and young adults (AYAs) in the United States. Historically, AYA patients with cancer, aged 15 to 39 years, have not shown the same improved survival as older or younger cohorts. This article reviews the contemporary cancer incidence and survival data through 2015 for the AYA patient population based on the National Cancer Institute's Surveillance, Epidemiology, and End Results registry program and the North American Association of Central Cancer Registries. Mortality data through 2016 from the Centers for Disease Control and Prevention's National Center for Health Statistics are also described. Encouragingly, absolute and relative increases in 5-year survival for AYA cancers have paralleled those of childhood cancers since the year 2000. There has been increasing attention to these vulnerable patients and improved partnerships and collaboration between adult and pediatric oncology; however, obstacles to the care of this population still occur at multiple levels. These vulnerabilities fall into 3 significant categories: research efforts and trial enrollment directed toward AYA malignancies, access to care and insurance coverage, and AYA-specific psychosocial support. It is critical for providers and health care delivery systems to recognize that the AYA population remains vulnerable to provider and societal complacency.     

Cardiovascular risk factors among long-term survivors of breast, prostate, colorectal, and gynecologic cancers: a gap in survivorship care?

Purpose

Individuals diagnosed with high survival cancers will often die of cardiovascular disease (CVD) rather than a recurrence of their cancer, yet CVD risk factors may be overlooked during survivorship care. We assess the prevalence of CVD risk factors among long-term cancer survivors and compare results to survey data from the general population in the same geographic region. We also characterize how often at-risk survivors discuss CVD-related health behaviors with their health care providers.

Methods

Survivors (n?=?1,582) of breast, prostate, colorectal, and gynecologic cancers, 4–14 years after diagnosis, were recruited from two California cancer registries for a cross-sectional mail survey. We assessed CVD risk factors, including smoking, body mass index, physical inactivity, hypercholesterolemia, hypertension, and diabetes, as well as report of discussions with health care providers about diet, exercise, smoking, and lifestyle change assistance.

Results

With the exception of current smoking, CVD risk factors were more common among survivors than the general adult population. Of survivors, 62.0 % were overweight or obese, 55.0 % reported hypertension, 20.7 % reported diabetes, 18.1 % were inactive, and 5.1 % were current smokers. Compared to white, non-Hispanic survivors, Hispanic (b?=?0.37, p?=?0.007) and African-American (b?=?0.66, p?<?0.0001), but not Asian, survivors reported significantly more risk factors. One in three survivors with one or more risk factors for CVD did not report a health promotion discussion with their health care providers.

Conclusions

CVD risk factors are common among long-term survivors, but many at-risk survivors may not discuss lifestyle prevention with their health care team. Primary care and oncology should work together to deliver optimal survivorship care that addresses CVD risk factors, as well as prevalent disease.

Implications for cancer survivors

Cardiovascular disease may compromise cancer survivors’ long-term health and well-being, yet cardiovascular risk factors may be overlooked during survivorship care. We document that CVD risk factors are common among cancers survivors, yet nearly a third of survivors do not report health promotion discussions with their medical teams. Survivors should be aware of their cardiovascular risk factors and initiate discussions with their medical teams about health promotion topics, if appropriate.     

Is no news good news? Inconclusive genetic test results in BRCA1 and BRCA2 from patients and professionals' perspectives

Background

Women from families with a high risk of breast or ovarian cancer in which genetic testing for mutations in the BRCA1/2 genes is inconclusive are a vulnerable and understudied group. Furthermore, there are no studies of the professional specialists who treat them - geneticists, genetic counsellors/nurses, oncologists, gynaecologists and breast surgeons.

Methods

We conducted a small qualitative study that investigated women who had developed breast cancer under the age of 45 and who had an inconclusive BRCA1/2 genetic diagnostic test (where no mutations or unclassified variants were identified). We arranged three focus groups for affected women and their close female relatives - 13 women took part. We also interviewed 12 health professionals who were involved in the care of these women.

Results

The majority of the women had a good grasp of the meaning of their own or a family member's inconclusive result, but a few indicated some misunderstanding. Most of the women in this study underwent the test for the benefit of others in the family and none mentioned that they were having the test purely for themselves. A difficult issue for sisters of affected women was whether or not to undertake prophylactic breast surgery. The professionals were sensitive to the difficulties in explaining an inconclusive result. Some felt frustrated that technology had not as yet provided them with a better tool for prediction of risk.

Conclusions

Some of the women were left with the dilemma of what decision to make regarding medical management of their cancer risk. For the most part, the professionals believed that the women should be supported in whatever management decisions they considered best, provided these decisions were based on a complete and accurate understanding of the genetic test that had taken place in the family.     

Pharmacokinetics of irinotecan and its metabolites in pediatric cancer patients: a report from the children’s oncology group

Objective  To develop a population pharmacokinetic model of irinotecan and its major metabolites in children with cancer and to identify covariates that predict variability in disposition. Methods  A population pharmacokinetic model was developed using plasma concentration data from 82 patients participating in a multicenter Pediatric Oncology Group (POG) single agent phase II clinical trial. Patients between 1 and 21 years of age with solid tumors refractory to standard therapy received irinotecan, 50 mg/m², as a 60-min intravenous infusion for 5 consecutive days every 3 weeks. Blood samples were collected and analyzed for irinotecan and three metabolites (SN-38, SN-38G, and APC). The population model was developed with NONMEM. Clearance and volume were scaled allometrically using corrected body weight. Exponential error models were used to describe the interindividual variance in pharmacokinetic parameters, and the residual error was described with a proportional model. Significant covariate effects were identified graphically using S-PLUS and were added to the base-model. The final model was evaluated by simulating data from two other POG trials. Results  The best structural model for irinotecan and its metabolites consisted of six-compartments: two compartments for irinotecan and SN-38, and one each for APC and SN-38G. Age and bilirubin were found to be significant covariates affecting SN-38 clearance. SN-38 clearance was greater in patients less than 10 years of age and lower in patients with a total serum bilirubin >0.6 mg/dL. Simulations revealed that the model was able to predict drug and metabolite exposure (AUC) for patients receiving the same or similar doses (30–65 mg/m²) of irinotecan. Conclusions  This population model accurately describes the pharmacokinetics of irinotecan and its primary metabolites. The model, which includes age and bilirubin as covariate effects on SN-38 clearance, is the first population model to describe the pharmacokinetics of irinotecan and its major metabolites in children. Supported in part by: NICHD 5 U10 HD037242-09, NIH M01 RR000188-43, NCI U01 CA57745, NCI U10 CA98453, NCRR M01 RR00188-37, The Mitchell Ross Children’s Cancer Fund, Pharmacia/Upjohn.     

Do critical care units play a role in the management of gynaecological oncology patients? The contribution of gynaecologic oncologist in running critical care units

Routine post‐operative care in high dependency unit (HDU), surgical intensive care unit (SICU) and intensive care unit (ICU) after high‐risk gynaecological oncology surgical procedures may allow for greater recognition and correct management of post‐operative complications, thereby reducing long‐term morbidity and mortality. On the other hand, unnecessary admissions to these units lead to increased morbidity – nosocomial infections, increased length of hospital stay and higher hospital costs. Gynaecological oncology surgeons continue to look after their patient in the HDU/SICU and have the final role in decision‐making on day‐to‐day basis, making it important to be well versed in critical care management and ensure the best care for their patients. Post‐operative monitoring and the presence of comorbid illnesses are the most common reasons for admission to the HDU/SICU. Elderly and malnutritioned patients, as well as, bowel resection, blood loss or greater fluid resuscitation during the surgery have prolonged HDU/SICU stay. Patients with ovarian cancer have a worse survival outcome than the patients with other types of gynaecological cancer. Dependency care is a part of surgical management and it should be incorporated formally into gynaecologic oncology training programme.