Living with advanced cancer and the role of the primary care provider: The missing piece in the survivorship discourse.

The period of survivorship has been identified as a distinct phase of the cancer continuum, and the key role of primary care providers in caring for cancer survivors has been recognized. However, much of the focus to date has been placed on cancer survivors who are treated with curative intent and survive cancer-free. Receiving less attention are those who are living with advanced, non-curative cancer. In this commentary, we review the current evidence about the characteristics of these survivors, their unmet needs and receipt of health care. We offer insights into future research, education and policy initiatives aiming to enhance the care for this population.

Is there a role for survivorship care plans in advanced cancer?

PURPOSE: The Institute of Medicine (2006) has recommended that cancer survivors completing treatment receive a survivorship care plan (SCP). The survivorship needs in advanced cancer have been overlooked and understudied. The potential role of SCPs for survivors with advanced or metastatic cancer is unknown and was explored in this study. METHODS: We conducted two focus groups of survivors with advanced or metastatic cancer. Participants reviewed a sample JourneyForward™ SCP modified for advanced cancer. Sessions were audiotaped and transcribed; transcripts and field notes were evaluated using inductive content analysis. RESULTS: Sixteen survivors with metastatic cancer participated: 12 (75 %) were female, 15 (94 %) were white, and median age was 66 (range 55-80); 9 participants had breast cancer, 4 colon, 2 prostate, and 1 ovarian cancer. Participants believed that an SCP would be most helpful after initial diagnosis and treatment, but not as helpful once the cancer progressed. They thought a "cancer care plan" focusing solely on the current management would be better to concisely summarize the treatment plan and time frame for the next segment of care for those with advanced cancer. Most participants endorsed the need to have written information to reinforce verbal information received during medical visits since it was difficult to remember information provided. Participants expected their oncologist to assume primary responsibility for coordination of the care plan, but anticipated an important supportive role for primary care providers. To this end, they emphasized the need for better communication between providers. CONCLUSIONS: A cancer care plan developed by the oncologist, similar to an SCP but more focused on current management, may be more useful for survivors with advanced cancer. Exploring this topic in larger groups of more diverse survivors with advanced cancer will help to elucidate the details a written plan of care should contain, and how to promote effective coordination between oncology and primary care providers. IMPLICATIONS FOR CANCER SURVIVORS: There are many transitions of care along the cancer journey. A written plan of care, similar to an SCP, may be useful for survivors with advanced cancer.

Preliminary psychometric evaluation of the Child Health Ratings Inventory (CHRIs) and Disease-Specific Impairment Inventory-Hematopoietic Stem Cell Transplantation (DSII-HSCT) in parents and children.

PURPOSE: To describe the initial results of the Child Health Ratings Inventory (CHRIs), 20-item generic health-related quality of life (HRQL) instrument and the 10-item disease-specific (DS) module, the Disease Specific Impairment Inventory-Hematopoietic Stem Cell Transplantation (DSII-HSCT), for children and adolescents, ages 5-18 years and their parents following HSCT. STUDY DESIGN: Using cross sectional design, 122 children with a median age of 11 years (range 5.0-18 years) completed the questionnaire (CHRIs + DSII-HSCT) with research assistance. Seventy-four parents independently completed a parallel version of the questionnaire; health care providers assigned a global clinical severity rating. RESULTS: The generic core includes four domains: physical, role, and emotional functioning, and energy. The DS module has three domains: worry, hassles, and body image. The Cronbach's alpha for parents and for older children (8 years and over) exceeded 0.70 for all generic and DS domains. While the range of alpha coefficients was lower for younger children, ages 5-7 year, only the alpha coefficient for one domain (energy) was less than 0.70. The instrument satisfactorily discriminated between clinically important groups: those early in the transplant process (< 6 months) versus those later (> 12 months) and by provider-assigned clinical severity ratings. CONCLUSION: results suggest that the CHRIs generic core and its DSII-HSCT module is a promising measure of HRQL after pediatric HSCT. Although parent and child reports were moderately correlated and revealed complementary results, the unique perspectives of both raters provide a more complete picture of HRQL. Longitudinal application is underway to further characterize the measurement properties of the CHRIs and to determine the instrument's responsiveness and sensitivity to change over time in this vulnerable population.

School re-entry after a cancer diagnosis: physician attitudes about truth telling and information sharing.

BACKGROUND: School re-entry for children with cancer hallmarks a return to age-appropriate activities; a process fraught with adjustment challenges. The paediatric oncologist is in a pivotal role of setting the tone and providing direction to the child, family, and other members of the health care and school team about this process. Understanding physicians' attitudes and behaviours regarding school re-entry will provide insight into these practices. METHODS: A four-part survey (general attitudes, patient factors, work cultures and respondent characteristics) was developed and mailed to the members of US and Japanese paediatric oncology professional societies. Japanese (n=362) and US (n=350) paediatric oncologists comprised the study sample; the average respondent was a male in his mid-forties providing clinical care>or=5 hours/week practising for about 15 years. Responses to a hypothetical scenario reflecting the range of how school re-entry issues for a child on treatment may be handled was the outcome variable in this report. RESULTS: US physicians (284/350, 84.5%) endorsed telling everyone (the school officials and classmates) about a child's diagnosis and treatment to facilitate the transition back to school. In contrast, only 93/359 (25.9%) of the Japanese respondents endorsed telling everyone. Japanese physicians were more likely to endorse telling everyone if they believed it was the physician's responsibility to tell children the truth at diagnosis (P<0.001), if they did not believe that awareness of cancer dashes hope (P=0.002), and were not influenced by type of cancer the child had (P=0.003). CONCLUSIONS: Differences in US and Japanese paediatric oncologist responses in return to school issues may reflect larger cultural issues such as: benefits and disadvantages to telling the child that he/she has cancer; hospitalization practices; and the availability of school re-entry programs. More needs to be learned about how children, their families and schools prefer to have re-entry issues handled during and after treatment and how these approaches affect the child's re-entry into school.

Impact of pharmacy practices on the cost of colony-stimulating factor use in pediatric stem cell transplantation: an institution-based analysis.

PURPOSE: An evaluation of colony-stimulating factor (CSF) use in pediatric stem cell transplantation (SCT) was conducted to identify potential cost-efficiencies while preserving institutional standards of patient care. METHODS: Clinical and pharmacy records of the 55 SCTs performed during fiscal year 1995 were reviewed. Material costs per vial and per microgram, exclusive of preparation or overhead costs, were used. The best costing strategy was defined as the least expensive stocking and dispensing practice to deliver the drug actually used during the study period. RESULTS: CSFs were used in 35 of 55 transplants; 68% of usage was protocol-mandated to enhance engraftment; the remainder was associated with life-threatening complications of SCT. All use was consistent with published evidence-based guidelines. Changes in stocking and dispensing practices would result in an overall annual savings of $48,162 (fiscal year 1995 dollars), a 39% decrease in cost without a change in clinical application. CONCLUSIONS: Our analysis demonstrates that stocking and dispensing practices place significant fiscal burden in the care of pediatric-aged patients and must be carefully considered. This analysis presents a model for evaluating all components of drug cost from a global perspective, highlighting a need for examination of pharmacy and manufacturing as well as clinical practices.

Growth factor practice patterns among pediatric oncologists: results of a 1998 Pediatric Oncology Group Survey. Economic Evaluation Working Group the Pediatric Oncology Group.

The American Society of Clinical Oncology (ASCO) guidelines on growth factor (GF) use recommend applying adult-derived guidelines in pediatric oncology. An ASCO survey of adult oncology GF use determined the preference for first degree prophylaxis (use of GF when febrile neutropenia [FN] is expected to be high in untreated patients), second-degree prophylaxis (administration of GF after a documented episode of FN on a previous cycle of chemotherapy), and intervention in the treatment of FN. Similar preferences have not been evaluated in pediatrics. The purpose of this study was to (1) characterize GF use in pediatric oncology; (2) correlate use patterns with demographic factors; and (3) compare the Pediatric Oncology Group (POG) and ASCO surveys. The ASCO survey was revised for use within pediatric oncology and was mailed to the physician membership of POG; 341 were returned (86% completion rate). Comparisons were made with the ASCO survey. Most (76%) physicians said GF use was determined by protocol requirements and most (70%) patients were entered on POG protocols. GF use as first-degree prophylaxis was selected 40% of the time, which was significantly greater than in adults; this was most influenced by anticipated duration of neutropenia (> or =7 days). The severity of the initial clinical course (e.g., neutropenia, infection) influenced use in second-degree prophylaxis; dose reduction alone was never selected. For FN, GF use was 45%, with lower preferences in uncomplicated FN (16%-38%) compared with complicated FN (66%). POG respondents endorse greater use of GF for first-and second-degree prophylaxis but less use in uncomplicated FN than do ASCO respondents. These patterns may reflect different strategies, including the role of chemotherapy, value of dose intensity, and perceived toxicity of regimens. Given these differences, adult-based guidelines may not be appropriate for pediatrics.

Balancing efficacy with cost: antiemetic control in the pediatric stem cell transplant (SCT) population.

We studied the practice patterns regarding intravenous (i.v.) ondansetron in children receiving stem cell transplants (SCT) at The Children's Hospital, Boston to identify cost efficiencies. The pharmacy provided information on material and preparation costs on 36 patients who received i.v. ondansetron during 41 SCT in 1995. We examined the effects of frequency, duration, and route of administration on costs. There were 498 days of ondansetron administration costing $49,083 (95$). Tremendous variation existed in frequency and duration with one third receiving i.v. ondansetron once daily, despite published evidence of equivalence of once a day and divided dosing. A switch to once daily i.v. dosing for all patients would have resulted in >/=28% savings. The median duration of use was 11 days (range 1-48); placing a cap for 7-10 days based on the length of SCT conditioning regimens, would produce savings of 48-60% over current use. By shifting administration route from i.v. to oral, a savings of 67% over current use, without a cap on duration, would be realized. Identifying areas for cost savings can be achieved after thorough analysis of all the component costs. We demonstrated that significant cost reductions could be realized by simple changes in prescribing practices without jeopardizing efficacy. These savings are achieved by standardizing dosing interval, route of administration and duration of treatment without altering daily dosage or access to an effective antiemetic. Bone Marrow Transplantation (2000) 25, 553-557.

Perspectives on cancer patient education.

OBJECTIVES: To provide an overview on cancer patient education. DATA SOURCES: Literature related to demographic and health care trends, patient education, health literacy, and cancer patient information needs. CONCLUSIONS: Cancer patients need information related to diagnosis, treatment, side effects, self-care needs, and effects on work and relationships. Planned patient teaching includes a variety of teaching strategies and written materials, and contributes to better patient outcomes. Inadequate health literacy and other barriers present challenges to providing effective patient education. IMPLICATIONS FOR NURSING PRACTICE: More research is warranted in developing assessment tools and effective health education techniques and in measuring outcomes and costs related to patient education. The education needs of cancer patients will not drastically change in the next century. How nurses meet those needs, however, will change as we apply new learning theories and technologies of teaching.

Overcoming multidrug resistance: valspodar as a paradigm for nursing care.

PURPOSE/OBJECTIVES: To review the mechanisms of multidrug resistance (MDR) in human cancer and the clinical use of MDR modulators to overcome or reverse P-glycoprotein (P-gp)-mediated MDR. DATA SOURCES: Current literature, ongoing clinical trials, and clinical experience. DATA SYNTHESIS: Agents, such as valspodar, that block the activity of P-gp can reverse or overcome MDR caused by overexpression of P-gp. The MDR modulator valspodar (PSC 833; Novartis Pharmaceuticals Corporation, East Hanover, NJ) is examined as a model for establishing nursing guidelines for this new class of therapeutic agents. CONCLUSIONS: The dose of some chemotherapy agents must be modified with concurrent valspodar administration. Studies examining the safety and efficacy of valspodar as a prototype of MDR modulators provide the basis for establishing nursing care guidelines. IMPLICATIONS FOR NURSING PRACTICE: Nursing care for the administration of valspodar includes understanding patient selection, criteria, dosing, and administration; side-effect management; patient monitoring and follow-up; and patient education.

Article on breast cancer risk and induced abortion concerns readers.

PIP: Inappropriate and inaccurate counseling with regard to abortion and the risk of breast cancer may result if readers accept without critical review Lucille Canty's biased article on the association between induced abortion and breast cancer printed in Oncology Nursing Forum (ONF). The potential resulting psychological harm could be considerable. The current debate over whether women have increased risk of developing breast cancer after an induced abortion continues, and the findings produced thus far have been inconclusive. Many scientists, including researchers at the National Cancer Institute, do not agree that any connection exists between induced abortion and breast cancer. Considering the complexity of assessing risk, a more thorough discussion of methodologic issues when assessing risk would have better served ONF readers. Furthermore, a less biased approach would have presented each of the studies more objectively. Finally, the conclusions which Canty drew in her abstract and article did not reflect the relative risks and conclusions drawn in the current literature she cited on the subject in her text.^ieng

Bone metastases: Part I--Pathophysiology.

Many cancers (especially breast, prostate, and lung cancers) metastasize to the bone. The most frequent site of bone involvement is the axial skeleton (i.e., cranium, ribs, spine, and pelvis). The sequelae of bone metastases include pain, hypercalcemia, pathologic fractures, and spinal cord compression. As patients survive for longer periods, effective management of bone metastases becomes critical to maintaining or improving quality of life. Controlling pain, preventing fractures and oncologic emergencies, and promoting mobility and function are the outcomes of successful management. Use of a clinical algorithm can assist the nurse in identifying bone metastases and managing the clinical sequelae. Knowledge of the pathophysiology and the ability to assess bone metastases will contribute to the nurse's ability to manage the clinical problems and to improve the quality of life of patients with cancer.

Bone metastases: Part II--Nursing management.

Nurses play a crucial role in identifying bone metastases and managing clinical sequelae, such as pain. Understanding the metastatic process is necessary for delivering effective nursing care. Part I of this article described the pathophysiology and assessment. Part II will provide an overview of the nursing management of the sequelae of bone metastases, including pain, pathologic fractures, spinal cord compression, hypercalcemia, and anemia. Risk factor identification can lead to prevention and early detection of these clinically significant problems. Clinical management of bone metastases will contribute to the nurse's ability to improve the quality of life of patients with cancer.

Information for women: management of menopausal symptoms.

PURPOSE/OBJECTIVES: To provide a written reference for women experiencing menopause-related symptoms. DATA SOURCES: Professional and popular books and articles. DATA SYNTHESIS: The process and symptoms of menopause are described in simple terms. Hormone replacement therapy is presented in terms of benefits and risks. CONCLUSIONS: A booklet is an easy-to-produce, efficient strategy for addressing common patient concerns. IMPLICATIONS FOR NURSING PRACTICE: A written booklet can assist nurses in presenting the necessary information to women experiencing or at risk for experiencing symptoms of menopause and in counseling them about potential interventions.

Hazards of chemotherapy. Implementing safe handling practices.

Over the last decade, concerns about the hazards of handling cytotoxic chemotherapeutic agents increased as various studies were published. Analysis of these data suggest possible carcinogenic, teratogenic, and mutagenic risk for health professionals (predominantly nurses and pharmacists) that handle these drugs. However, the research is inconclusive. The nature of the problem, along with methodologic issues, may make it difficult or impossible to provide definitive data on the type and degree of risk for those exposed to chemotherapeutic agents. Guidelines and recommendations have been published by various groups including the Occupational Safety and Health Administration, the American Society of Hospital Pharmacists, the Oncology Nursing Society, and others. In essence, they recommend that only health professionals with specialized training should prepare or administer chemotherapeutic agents. In addition, equipment, unused drugs, and human excreta should be treated as chemically hazardous waste and disposed of according to the individual facility's policies and procedures. These guidelines should provide protection for those involved in preparing chemotherapy for administration, regardless of where this is done. Studies have shown differences in the degree and type of procedures followed and between existing procedures and actual practice. Some of these differences are based on the site of care (e.g., hospital [also influenced by bed size], private practice, or home care). Issues involved in implementing reasonable approaches to lower the relative risk for health-care professionals that handle cytotoxic chemotherapy will be discussed.

The future of advanced clinical practice in oncology nursing.

Futures research, a popular field that forecasts the future based on past and present statistics and trends, can help oncology nurses project needs and prepare for the unknown. Projections based on past and present statistics and trends related to health care, nursing, and cancer abound. They provide some guidance but fall short of describing how nurses can best respond to the growing number of patients with cancer, survivors of cancer, their families, and communities. If we can define, measure, and articulate the effect that advanced practice nurses have on patients with cancer, we can determine the most effective way to implement cancer care in the future.

Obstacles to implementing cancer clinical trials.

There are numerous obstacles to implementing and conducting clinical trials. Patient accrual and the costs of clinical trials are difficult problems for researchers. Additional obstacles to implementing clinical trials are patient-related, physician-related, and nurse-related barriers.