Communication skills for discussing treatment options when chemotherapy has failed

Palliative care is defined as care for symptoms throughout the disease trajectory delivered along with disease-modifying therapies, whether the patient has curable or incurable cancer. Patients have unique informational and emotional needs at each point in their disease trajectories. To meet each patient's needs, oncologists can follow a road map presented here for discussing treatment options that include palliative care. Oncologists can learn what patients need cognitively by eliciting perceptions about cancer and its treatment before giving any bad news. Emotional reactions can be anticipated and handled with empathy to reduce patient distress. After patients' emotions have been addressed and they are ready to discuss treatment options, oncologists can establish shared treatment goals. These shared treatment goals may need to be negotiated, including resolving conflicts between perceptions and knowledge. Finally, based on these goals, the oncologist can offer patient-centered recommendations and help establish a treatment plan.     

Perceived helpfulness and impact of social support provided by family, friends, and health care providers to women newly diagnosed with breast cancer

We evaluated the helpfulness of informational, emotional, and decision-making support received by women newly diagnosed with breast cancer from their family, friends, and health care providers. Data were collected at two time points via patient surveys: baseline on an average 2 months post-diagnosis and follow-up at 5 months post-baseline. In the period closer to diagnosis, majority of the women received helpful informational support from health care providers (84.0%); helpful emotional support from family (85%), friends (80.4%), and providers (67.1%); and helpful decision-making support from providers (75.2%) and family (71.0%). Emotional support at baseline and emotional and informational support at 5-month follow-up were significantly associated with patients' health-related quality of life and self-efficacy outcomes (p<0.01). Perceived helpfulness of informational, emotional, and decision-making support provided by family, friends, and providers however significantly decreased over time (p<0.001). Cancer patients' desire significant amount of support throughout their cancer journey. Our results show that while patients receive a lot of support during the period closer to diagnosis, receipt of helpful support drops significantly within the first year itself. In order to facilitate cancer patients' adjustment to their illness, efforts need to be made to understand and address their support needs throughout the cancer experience.     

Two models of care as evaluated by a group of women operated on for breast cancer with regard to their perceived well-being

The main aim of this study was to evaluate two different models of care for breast cancer patients with regard to the patients' perceived well-being. Twenty-nine patients were treated in an established care model and 115 patients were treated at a surgical breast clinic with an increased personnel continuity and a short hospital stay. Two questionnaires were used, The Sense of Coherence (SOC) Scale and a study-specific questionnaire concerning perceptions of the hospital stay, information received, body image, social support, pain, health and psycho-sociological well-being. Regression analyses were used to study the effects of the care models and the SOC on the patients' perceived well-being. The results showed that the care model with high personnel continuity had a significant positive effect on the patients' emotional state, mental well-being and perception of postoperative pain evaluated 1 year after surgery. The strongest predictors of the patients' well-being postoperatively were their perceived well-being before surgery. Furthermore, the stronger the SOC the more positive were the patients' emotional perceptions, perceived general health and mental well-being after surgery. The duration of the hospital stay did not show any effect on the patients' well-being. It is concluded that an early preoperative psycho-social assessment of the patients is of importance in planning the care, to help patients cope with the disease and its treatment. It is suggested that a care model with high personnel continuity for breast cancer patients could facilitate that assessment.     

Breast Cancer Treatment of Women with Schizophrenia and Bipolar Disorder from Philadelphia, PA: Lessons Learned and Suggestions for Improvement

Treating cancer in patients with concurrent severe mental illness is complex and challenging for patients, families, and health care providers. Two such illnesses include schizophrenia and bipolar disorder. In this review, cases of women with breast cancer and severe mental illness from Philadelphia, PA illustrate the obstacles these women face in maintaining adequate cancer care. Barriers to receiving cancer treatment include understanding their disease, continuing medications and appointments, and experiencing complications of their psychiatric disorders. Learning from these cases is critical for health care providers and allows for innovation in treating and educating this difficult population. Increasing patient visit time, using social support services, and psychiatrist and psychiatrist-liaisons are necessary to improve care. In addition, family or caregivers should be included in discussions when possible. These techniques will assist in educating patients, improve insight into their disease and treatment, and allow them to benefit from cancer therapy.     

Follow-up of adult cancer survivors: new paradigms for survivorship care planning

The reality of cancer care in the twenty first century is that patients live longer and are more likely to receive care from multiple providers across diverse delivery systems over many years. To meet the challenge of optimal survivor care, a summary of cancer treatment and a formal plan for survivorship must be explained to patients and shared among providers at the end of cancer treatment. These plans must be dynamic documents that change with the circumstances of individual patients, the growth of knowledge, and the guidelines in specific relevant areas. In the new paradigm, open communication across the spectrum of survivor needs and concerns (as contained in a survivorship care plan) will successfully transition cancer patients to healthy survivors. Survivorship planning must become an integral part of every oncologist's education and practice.     

Interventions to improve patient participation in the treatment process for culturally and linguistically diverse people with cancer: A systematic review

Disparities in cancer outcomes for people from culturally and linguistically diverse (CALD) groups are well known. Improving CALD patients' active participation in treatment processes holds potential to improve outcomes, but little is known of effective strategies to facilitate this. This systematic review investigated interventions to improve three aspects of participation in cancer care among CALD groups, namely involvement in decision‐making, communication with health providers and treatment adherence. A comprehensive search of electronic bibliographic databases was conducted to identify intervention studies that reported outcomes relevant to patient participation for CALD groups. Two reviewers independently critically appraised the studies and abstracted data. Of 10 278 potential articles, seven met the inclusion criteria, including three randomized controlled, three non‐randomized and one mixed‐method experimental studies. Interventions included the use of patient navigators, videos and decision aids. The impact on patient participation was varied. The effect of a decision aid and patient navigator interventions on communication with health providers was positive. While the use of a decisions aid successfully facilitated shared decision‐making and patients' perception of treatment adherence, the use of patient navigators was ineffective. A computer support system was found to improve general patient participation; however little clarification of what this involved was provided. This systematic review identified few rigorous evaluations of interventions to improve treatment participation for CALD people with cancer, highlighting the lack of a robust evidence base to improve this crucial aspect of care. The development and evaluation of interventions for diverse populations remains a priority.     

How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG? Survivorship Center of Excellence Network

Introduction

This study examined the association between sociodemographic, cancer treatment, and care delivery factors on young adult cancer survivors?? confidence in managing their survivorship care.

Methods

Survivors aged 18?C39 years (n?=?376) recruited from the LIVESTRONG? Survivorship Center of Excellence Network sites completed a survey assessing self-reported receipt of survivorship care planning, expectations of their providers, and confidence in managing their survivorship care. Multivariate logistic regression identified characteristics of those reporting low confidence in managing their survivorship care.

Results

Mean age was 28 years; mean interval from diagnosis was 9?±?8 years. Seventy-one percent reported currently attending an oncology survivorship clinic. Regarding survivorship care planning, 33% did not have copies of their cancer-related medical records, 48% did not have a treatment summary, and 55% had not received a survivorship care plan. Seventy percent identified the oncologist as the most important health care provider for decisions regarding test and treatment decisions while 10% reported using a ??shared-care model?? involving both primary care providers and oncologists. Forty-one percent were classified as having low confidence in managing survivorship care. In multivariate analysis, low confidence was associated with non-white ethnicity and lack of a survivorship care plan (both p?Discussion/conclusions Findings suggest that provision of survivorship care plans for young adult cancer survivors can be used to improve confidence in managing survivorship care, particularly for ethnic minorities.

Implications for cancer survivors

Survivors should consider advocating for receipt of a survivorship care plan as it may facilitate confidence as a consumer of survivorship care.     

Step by step development of clinical care pathways for older cancer patients: Necessary or desirable?

Medical and nursing staff in oncology for older cancer patients are confronted with a range of problems including co-morbidity, poly-pharmacy, cognitive impairments, emotional problems, functional limitations, sensory impairment and a lack of social support. Comprehensive geriatric assessment identifies many of the existing problems and can be used to estimate life expectancy and tolerance of treatment. However, health care providers have to interpret and apply the medical and nursing information and must deal with specific problems and care needs throughout the continuum of cancer care. Imperfect interdisciplinary communication, cooperation and patient-provider communication may further complicate the care actually delivered. A clinical care pathway aims to improve continuity, increase multidisciplinary tuning and deliver appropriate patient education, treatment and care for vulnerable older cancer patients. This paper gives an overview of common problems in older cancer patients and addresses communication barriers through the development of clinical care pathways in geriatric oncology.     

Are survivorship care plans responsive to African-American breast cancer survivors?: voices of survivors and advocates

Purpose

African-American breast cancer survivors (AABCS) suffer the greatest from cancer recurrence, morbidity, and mortality in part due to the lack of cancer follow-up care and surveillance. To improve survival and survivorship, the Institute of Medicine advises that cancer survivors be provided a survivorship care plan (SCP). The current study investigated AABCS’ understanding of SCP and gathered preliminary feedback on infusing cultural and socioecological responsiveness.

Methods

The study embraced a community-based participatory research framework. Three facilitated, structured, consensus meetings were conducted with AABCS (N?=?25) and advocates (N?=?3) to provide information towards identifying the content domains of an SCP that are culturally responsive to AABCS.

Results

AABCS recommended inclusion of patient-centered information on the purpose and use of the SCP. They raised concerns that higher mortality in AABCS may be due to greater comorbidities and inadequate surveillance and follow-up care. Participants recommended that the SCP document all comorbidities and medications, regardless of relationship to cancer; referrals for cancer-related providers; and culturally informed health advisories.

Conclusion

Study findings indicate that the available SCP template lacked adequate content on health history, comorbidity, health promotion, and functioning. These factors constitute the underlying clinical, psychosocial, and behavioral risks for poor disease outcomes that may be exacerbated in AABCS.

Implications for Cancer Survivors

SCPs are intended to educate and activate patients to join their oncology care team as informed partners. However, the emerging science and implementation of SCPs seem void of patient input. Our investigation suggests a practical approach for survivor engagement in the SCP discourse to increase their cultural responsiveness and patient-centeredness.     

Ostomy Patient Management: Care that Engenders Adaptation

The patient requiring ostomy surgery has needs above and beyond the typical perioperative needs of an individual experiencing major abdominal surgery. These needs may be categorized as technical ostomy management, information, and emotional support. The health care team managing ostomy patients must be prepared to address the patients' needs in these three categories. This can be accomplished when the multidisciplinary team establishes a comprehensive plan of care that consists of five elements: information, technical expertise, psychosocial support, referrals, and surveillance. Each element plays a critical role in the patients' adaptation to ostomy surgery. Pertinent aspects of each element are described. By incorporating these elements into the plan of care, the health care team engenders patient adaptation to ostomy surgery.     

Implementing and evaluating shared decision making in oncology practice

Answer questions and earn CME/CNE Engaging individuals with cancer in decision making about their treatments has received increased attention; shared decision making (SDM) has become a hallmark of patient‐centered care. Although physicians indicate substantial interest in SDM, implementing SDM in cancer care is often complex; high levels of uncertainty may exist, and health care providers must help patients understand the potential risks versus benefits of different treatment options. However, patients who are more engaged in their health care decision making are more likely to experience confidence in and satisfaction with treatment decisions and increased trust in their providers. To implement SDM in oncology practice, physicians and other health care providers need to understand the components of SDM and the approaches to supporting and facilitating this process as part of cancer care. This review summarizes recent information regarding patient and physician factors that influence SDM for cancer care, outcomes resulting from successful SDM, and strategies for implementing SDM in oncology practice. We present a conceptual model illustrating the components of SDM in cancer care and provide recommendations for facilitating SDM in oncology practice. CA Cancer J Clin 2014;64:377–388. © 2014 American Cancer Society .     

Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center

Individuals at high risk for hereditary cancers often receive genetic counseling and testing at tertiary care centers; however, they may receive care for long-term management of their cancer risk in community settings. Communication of genetic test results to health care providers outside of tertiary care settings can facilitate the long-term management of high risk individuals. This study assessed women’s communication of BRCA1/BRCA2 genetic test results to health care providers outside of tertiary care settings (termed “outside” health care providers, or OHCPs) and women’s perceptions regarding communication of results. Women (n = 312) who underwent BRCA1/BRCA2 genetic counseling and testing completed a questionnaire assessing whether or not they shared test results with OHCPs and perceptions regarding the communication of test results to OHCPs. Most (72%) shared genetic test results with OHCPs. Women with no personal history of cancer were more likely to have shared results compared to women with a personal history of cancer. Mutation status did not significantly predict sharing of genetic information. Most reported positive perceptions regarding the disclosure of genetic test results to OHCPs. The majority did not report any concerns about potential insurance discrimination (88%) and indicated that OHCPs were able to appropriately address their questions (81%). Although most women shared their genetic test results with OHCPs, those with a personal history of cancer may need further encouragement to share this information. Tertiary care centers should facilitate outreach and education with OHCPs in order to assure appropriate long-term cancer risk management for high risk populations.     

Strategies to improve care for children with cancer in Sub-Saharan Africa

Great progress has been made in the care of children with cancer in recent decades. Worldwide, more than 80% of children with cancer live in resource-limited countries where access to care is poor. Sub-Saharan Africa is the world’s poorest region. Child mortality is high, caused by largely preventable and treatable conditions. Paediatric cancer accounts for only a small fraction of deaths and understandably receives little attention from local policy makers or global health agencies. The survival of children with cancer is very poor. Challenges to improving survival include advanced-stage disease at presentation, failure to start or complete treatment (abandonment), inadequate hospital infrastructure and medications, lack of trained health care providers, lack of cancer registration and follow-up and lack of treatment guidelines adapted to local medical facilities. We propose a stepwise approach that integrates paediatric cancer treatment with existing general paediatric care. Priority is given to interventions (improvement of supportive care, diagnostic facilities) that also improve general paediatric care. Minimal requirements for diagnostic procedures include complete blood counts, HIV and malaria tests, blood cultures, histopathology and simple imaging (X-ray and ultrasonography). Feasible interventions include adequate palliative care, curative treatment for Burkitt lymphoma and Wilms tumour and symptomatic treatment for Kaposi sarcoma.     

Family support in advanced cancer

Changes in the health care system have resulted in a shift of cancer care from the in-patient arena to ambulatory and home settings. This shift has likewise translated into increased family involvement in the day-to-day care of the person with cancer. Cancer patients have multifaceted needs, including disease and treatment monitoring, symptom management, medication administration, emotional support, assistance with personal care, and assistance with instrument care. Family caregivers may be ill prepared to assume these tasks, requiring information on the disease and treatment, as well as instruction in technical and care skills. Moreover, caregiving must be balanced against already established roles and role responsibilities. In addition, family caregivers have their own emotional responses to the patients' diagnosis and prognosis, and may require coaching and emotional support themselves. The health care system can facilitate positive outcomes by embracing the family caregiver as a partner in the health care team, providing instruction and guidance to the caregiver as he/she assumes this role, and evaluating the home care situation. Research to date has only scratched the surface of testing interventions that meet the needs of the cancer caregiver. A research agenda is proposed to more fully elucidate the cancer caregiver's experience throughout the illness and treatment trajectory, and identify the means to effecting positive outcomes for the person with cancer, their family caregiver, and the health care system.     

Cancer Care Management through a Mobile Phone Health Approach: Key Considerations

Greater use of mobile phone devices seems inevitable because the health industry and cancer care are facingchallenges such as resource constraints, rising care costs, the need for immediate access to healthcare data of typessuch as audio video texts for early detection and treatment of patients and increasing remote aids in telemedicine.Physicians, in order to study the causes of cancer, detect cancer earlier, act in prevention measures, determinethe effectiveness of treatment and specify the reasons for the treatment ineffectiveness, need to access accurate,comprehensive and timely cancer data. Mobile devices provide opportunities and can play an important role inconsulting, diagnosis, treatment, and quick access to health information. There easy carriage make them perfecttools for healthcare providers in cancer care management. Key factors in cancer care management systemsthrough a mobile phone health approach must be considered such as human resources, confidentiality andprivacy, legal and ethical issues, appropriate ICT and provider infrastructure and costs in general aspects andinteroperability, human relationships, types of mobile devices and telecommunication related points in specificaspects. The successful implementation of mobile-based systems in cancer care management will constantlyface many challenges. Hence, in applying mobile cancer care, involvement of users and considering their needsin all phases of project, providing adequate bandwidth, preparation of standard tools that provide maximummobility and flexibility for users, decreasing obstacles to interrupt network communications, and using suitablecommunication protocols are essential. It is obvious that identifying and reducing barriers and strengtheningthe positive points will have a significant role in appropriate planning and promoting the achievements of mobilecancer care systems. The aim of this article is to explain key points which should be considered in designingappropriate mobile health systems in cancer care as an approach for improving cancer care management.     

Public policy, human consequences: the gap between biomedicine and psychosocial reality

Despite evidence-based research demonstrating the high prevalence rates of emotional distress, medical systems continue to focus their attention on biomedical aspects of treatment leaving a significant gap in patient care. This paper reflects on values and policy and suggests that we are unlikely to change health care systems unless we routinely address comprehensive aspects of the patient's experience. If we do not measure indicators of emotional distress, we risk not responding to this significant aspect of the cancer experience. The key message to health care providers here is: what we measure is what we act upon.     

Toward a patient-centered approach: incorporating principles of participatory action research into clinical studies

Despite the shift to patient-centered care in recent years, many clinical studies continue to reinforce the traditional researcher/subject relationship. In contrast, action research engages study participants in a collaborative relationship with researchers. OBJECTIVES: To review the benefits of adding a participatory component to an existing study with respect to (1) engaging participants in the research process to clarify and validate qualitative findings, (2) engaging participants in the change process to develop potential solutions for improving integrative cancer services, and (3) giving voice to the concerns of patients using complementary and alternative medicine. METHOD: Focus groups were used to clarify concepts arising from patient interviews and to provide a forum for participants to develop recommendations and facilitate dissemination. CONCLUSION: Our approach empowered patients by involving them in the research and in developing solutions for how health care providers, policy makers, and researchers can enhance an integrative approach to cancer care.     

Oncofertility in Canada: an overview of Canadian practice and suggested action plan

Background

Cancer can be a devastating diagnosis. In particular, malignancy and its indicated treatments have profoundly negative effects on the fertility of young cancer patients. Oncofertility has emerged as a new interdisciplinary field to address the issue of gonadotoxicity associated with cancer therapies and to facilitate fertility preservation. In Canada, these fertility issues are often inadequately addressed despite the availability of resources. The goal of this four-part series is to facilitate systemic improvements in fertility preservation for adolescent and young adult Canadians with a new diagnosis of cancer.

Methods

Here, we describe the services currently available in Canada and the challenges associated with their utilization. Finally, we outline strategies to help maximize and facilitate fertility preservation in the young cancer patient.

Results

Despite an existing infrastructure to the oncofertility system in Canada, the ability of that system’s components to function together and to coordinate patient care is a challenge. Areas of weakness include poor access and referral to fertility services, a lack of readily available education for patients and health care providers, and inconsistent interdisciplinary coordination in patient care.

Conclusions

The implementation of a framework for multidisciplinary resource allocation, education, patient referral, and established lines of communication may facilitate a functional oncofertility system in Canada.