Patient Perceptions of Survivorship Care Plans: A Mixed-Methods Evaluation.

PURPOSE: To understand the perceptions of patients with cancer regarding the role and purpose of a survivorship care plan (SCP) to inform content and delivery opportunities. PARTICIPANTS & SETTING: A mixed-methods evaluation was conducted among patients at a survivorship clinic for high-risk survivors of sarcomas in an academic medical center. METHODOLOGIC APPROACH: An electronic survey was administered, followed by qualitative telephone interviews. FINDINGS: 51 surveys were delivered, and 23 surveys were completed. Eight telephone interviews were completed. Content analysis revealed that participants value the SCP as a health management tool to address information needs and reduce fear of recurrence. Few participants shared their SCP with other healthcare providers. IMPLICATIONS FOR NURSING: Patients use their SCP as a health management tool to understand the details of their cancer history and treatment and to manage their health concerns. Nurses who care for patients with cancer are well positioned to use the SCP as a patient education tool.

A Scandinavian Point of View: Caring for Patients With Sarcoma Across Boundaries.

Sarcomas are rare connective tissue malignancies. Patients and their families often experience many challenging problems during the cancer journey. Professionals working in this complex landscape need to collaborate to optimize patient outcomes.

Nursing considerations for patients with sarcoma on pazopanib therapy.

BACKGROUND: Pazopanib was approved by the U.S. Food and Drug Administration for use in patients with soft tissue sarcoma (STS) in 2012. Because of the scarcity of effective treatments for advanced STS, pazopanib has become commonly prescribed. OBJECTIVES: The purpose of this study was to assess the knowledge level of nurses regarding the safe administration of pazopanib, as well as management of its side effects. The study was also intended to examine the consistency of patient education about pazopanib. METHODS: A 12-question online survey was completed by six nurses working in the outpatient sarcoma department of a National Cancer Institute-designated comprehensive cancer center. The survey included questions about patient education, including side-effect management and medication safety. FINDINGS: The survey revealed that most nurses were consistent with best practices surrounding pazopanib teaching and side-effect management. However, many differences were observed, and patient education regarding drug interactions and the safe administration of pazopanib is lacking. Further standardization of nursing practice in this regard would greatly benefit patients taking pazopanib.

Tumor fusocelular hialinizante con rosetas gigantes: caso clínico y revisión de la literatura / Hyalinizing spindle cell tumor with giant rossetes

El tumor fusocelular hialinizante con rosetas gigantes (TFHRG) pertenece al grupo de los sarcomas fibromixoides de bajo grado (SFBG), representando un 10-25% de estos. Se trata de un tumor de tejidos blandos de estirpe fibroblástica muy poco frecuente y del que hay pocas referencias en la literatura. Es un tumor de lento crecimiento y que raramente produce dolor. Su aparición más frecuente es en tronco y extremidades y suelen localizarse proximales y profundos. Se presenta el caso clí- nico de una mujer de 65 años con una tumoración a nivel de raíz de miembro superior derecho, se realiza exéresis y el resultado anátomo-patológico es compatible con TFHRG. En el estudio de extensión no se evidencian lesiones a distancia. Tras 5 años de seguimiento no presenta datos de recidiva ni metástasis. Dada la rareza del TFHRG, no existen guías diagnóstico-terapéuticas para su manejo, por lo que es interesante señalar cuál es la evidencia clínica actual. El estadiaje inicial está basado en la realización de biopsia y TAC (Tomografía Axial Computarizada) o RMN (Resonancia Magnética Nuclear). El tratamiento de elección es quirúrgico mediante exéresis, tanto en las lesiones primarias como en las metastásicas. En cuanto al pronóstico, inicialmente se creía que era favorable, con bajo índice de recidivas y metástasis, pero en los últimos estudios con períodos de seguimiento a más largo plazo se ha visto que son más frecuentes de lo que se pensaba. Las metástasis son principalmente a pulmón y pleura. Esto hace que nos replanteemos si el término sarcoma fibromixoide de bajo grado es el adecuado

Hyalinizing spindle cell tumor with giant rosettes is a low-grade fibromixoid sarcoma, representing 10-25% of these. It is a fibroblastic soft tissue tumor and only a few cases have been described in literature. The tumors occur principally as a painless, slowly growing, deeply situated mass of the proximal extremities. We describe a 65 year-old man who appeared to have an axillary tumor, which we subsequently removed. The anathomopathologic results revealed hyalinizing spindle cell tumor with giant rosettes. The extension exam did not reveal any metastatic lesions. The first five years after surgery, we didn´t find recurrence or metastatic lesions. This kind of tumor therefore, is very uncommon and protocols for the diagnosis, treatment and following are thus scarce. Having access at the time to a clinical guide to help decipher the complexities surrounding the diagnosis would have been hugely beneficial. Initial treatment should be the same as all other soft-tissue tumors as this treatment is based in image studies and biopsy. Choice treatment is to surgically remove the tumor, both the primary and metastatic lesions. In terms of prognosis, it was initially believed to be consistent with a low rate of recurrence and metastasis. However, actual studies with longer follow-up periods do show recurrence and metastasis to be more common than previously thought. Metastases mainly occur in the lung and pleura. With the actual state we rethink if low-grade fibromixoid sarcoma is a correct term to wedge it

Analysis of risk factors for central venous catheter-related complications: a prospective observational study in pediatric patients with bone sarcomas.

BACKGROUND: The incidence of central venous catheter (CVC)-related complications reported in pediatric sarcoma patients is not established as reports in available literature are limited. The analysis of risk factors is part of the strategy to reduce the incidence of CVC complications. OBJECTIVE: The objective of this study was to determine the incidence of CVC complications in children with bone sarcomas and if defined clinical variables represent a risk factor. METHODS: During an 8-year period, 155 pediatric patients with bone sarcomas were prospectively followed up for CVC complications. Incidence and correlation with clinical features including gender, age, body mass index, histology, disease stage, and use of thromboprophylaxis with low-molecular-weight heparin were analyzed. RESULTS: Thirty-three CVC complications were recorded among 42 687 CVC-days (0.77 per 1000 CVC-days). No correlation between the specific clinical variables and the CVC complications was found. A high incidence of CVC-related sepsis secondary to gram-negative bacteria was observed. CONCLUSIONS: The analysis of CVC complications and their potential risk factors in this sizable and relatively homogeneous pediatric population with bone sarcomas has led to the implementation of a multimodal approach by doctors and nurses to reduce the incidence and morbidity of the CVC-related infections, particularly those related to gram-negative bacteria. IMPLICATIONS FOR PRACTICE: As a result of this joint medical and nursing study, a multimodal approach that included equipping faucets with water filters, the reeducation of doctors and nurses, and the systematic review of CVC protocol was implemented.

Experience of newly diagnosed patients with sarcoma receiving chemotherapy.

PURPOSE/OBJECTIVES: To examine symptom distress and quality of life (QOL) in newly diagnosed patients with sarcoma receiving chemotherapy. DESIGN: Pilot study; descriptive, quantitative. SETTING: Urban community cancer center in the northeastern United States. SAMPLE: 11 newly diagnosed patients with sarcoma. METHODS: Participants completed the Edmonton Symptom Assessment Scale and the Functional Assessment of Cancer Therapy-General at baseline and on days 1, 15, and 21 of their chemotherapy treatment. MAIN RESEARCH VARIABLES: Symptom distress and QOL. FINDINGS: Fatigue was the most prevalent and pervasive symptom. Anxiety, well-being, lack of appetite, drowsiness, and depression were the most commonly reported symptoms during chemotherapy. QOL was negatively affected. The lowest mean score reported was for functional well-being. Outcome profiles for symptom distress increased over time, whereas QOL profiles decreased over time. Exploratory analyses of age, race, sex, and diagnosis group suggested differences that warrant further study. CONCLUSIONS: Overall, increasing symptom distress and reduced QOL over time were reported by patients with sarcoma during chemotherapy. Exploratory analysis by demographic variables and treatment group suggested the need for further research of predictors for symptom distress and QOL. IMPLICATIONS FOR NURSING: Clinical and research implications included the need for better understanding about symptom distress and QOL predictors in patients with sarcoma, as well as the evaluation of interventions directed to address this population's specific needs.

Assessing the nutritional status of patients with sarcoma by using the scored patient-generated subjective global assessment.

An intervention with the Scored Patient-Generated Subjective Global Assessment was implemented at a community cancer center to identify patients with sarcoma at risk for malnutrition. This population usually is not considered to be at nutritional risk because of young age and the site of diagnosis; however, 60% of patients assessed were at risk for malnutrition or were severely malnourished. Nurses and dietitians should be aware of potential nutritional risk in this population and learn about possible interventions.

Emotional support given by ward-based nurses to sarcoma patients.

BACKGROUND: Cancer patients value emotional support but may encounter difficulties in accessing appropriate sources of support. This study explored the emotional support, as perceived by patients, that ward nurses give to sarcoma patients at a large cancer centre. METHODS: A purposive sample of five sarcoma patients who had experienced numerous admissions throughout their chemotherapy took part. These participants were interviewed using a method based on the critical incident technique, which utilised face-to-face semi-structured interviews. RESULTS: The data produced from the interviews contained descriptions of incidents where ward nurses had been either successful or unsuccessful in providing emotional support to participants. Six themes emerged which highlighted the areas of behaviour that were important to the participants. The recognition of their feelings and needs was a major theme, including reference to the significance of ward nurse behaviour in providing emotional support on their first admission to the unit. Evidence emerged where nurses had successfully aided patients. Conversely other examples demonstrated a negative impact on the participants' emotional well-being, upsetting them and proving additional stress. CONCLUSION: It was concluded from the study that ward nurses have an important role in providing emotional support to sarcoma patients. Whilst this study was small, it has shown the successful use of a methodology based on the critical incident technique. The findings have been used to aid nurses on the unit to reflect on their roles in caring for patients with sarcomas.

Relational narratives: solving an ethical dilemma concerning an individual's insurance policy.

Decisions based on ethics confront nurses daily. In this account, a cardiac nurse struggles with the challenge of securing health care benefits for Justin, a patient within the American system of health care. An exercise therapy that is important for his well-being is denied. The patient's nurse and an interested insurance agent develop a working relationship, resulting in a relational narrative based on Justin's care. Gadow's concept of a relational narrative and Keller's concept of a relational autonomy guide this particular case. As an ethics framework influenced by feminist ethical theory, Gadow's, Keller's and Tisdale's ideas demonstrate the fluidity with which the nurse and others can work while maintaining both autonomy and engagement without being self-sacrificing.

Gender issues in patients with extremity soft-tissue sarcoma: a pilot study.

Soft-tissue sarcoma (STS) affects men and women with equal frequency and commonly presents as an asymptomatic mass in patients 40 to 50 years of age. Recent study has identified physical, emotional, and psychological factors associated with a diagnosis of malignancy, but the tissues affecting the STS patient population may differ from those of more common cancers due to physical disability secondary to treatment. Research to date has not dealt specifically with gender differences in the reaction and adaptation to the cancer diagnosis. This pilot study was designed to evaluate the treatment experiences of five males and five females treated with surgery and radiation for STS of the thigh and followed posttreatment for at least 2 years. The open-ended interview was used to collect data, which was then subjected to a constant comparative analysis technique. The STS patients shared many concerns of cancer patients, with additional physical complaints. Physical symptoms were common to men and women, but women adapted more easily with explanation. Women feared losing life, family role, and relationships. Along with men, they also feared the losses of limb and career. For women, support included faith and sharing stories with others, whereas men preferred to deal with their illnesses individually and concealed emotions from loved ones. The perception of disease time frame was also distinct, with men adopting a fatalistic attitude and regarding their disease as an isolated episode. Women believed their condition was ongoing. Women need repeated information from several sources along with reassurance and increased social support, whereas men prefer the minimum of social support, requiring instead independence and extra attention to physical limitations. These results can improve STS patient treatment by increasing awareness in the patient, family, and medical team of the psychosocial issues that can be expected to arise.

Parse's theory of human becoming: an alternative guide to nursing practice for pediatric oncology nurses.

The Parse theory of human becoming guides nurses in their practice to focus on quality of life as it is described and lived. Parse's theory is presented here as an alternative approach for nursing practice in pediatric oncology. In this article, the human becoming theory is discussed and the practice dimensions and processes are described and illuminated with an example from nursing practice.

Supporting one another: the nature of family work when a young adult has cancer.

Families, and the support they provide, are one of the most important resources of the informal health care delivery system. As nurses we are called upon to enable clients to maximize their use of family resources and to enable families to cope with illness-related events. While research has clearly documented the important role of support in enabling persons to cope effectively with illnesses and illness-related events, further research to understand the processes of providing support within families has been called for. With such information we may be more effective in our efforts to guide and support families as they cope with illness in a family member. This paper was developed from a qualitative study with young adults with cancer that examined social relationships in order to understand the nature of interactions perceived as supportive and the context within which they occurred. In-depth interviews conducted with young adults provided detailed data regarding the nature of support young adults received from and offered to their families in order to maintain family functioning. The processes of offering and receiving support have been conceptualized into five categories of 'family work'. The nature of the work is described and the roles of family members in accomplishing the work are addressed. The findings are discussed in relation to current issues in practice.