Susan K. Ogle

Sperm Banking for Adolescent and Young Adult Cancer Patients: Sperm Quality, Patient, and Parent Perspectives

Infertility is often a complication for adolescent and young adult males who receive cancer therapy, a problem that might be averted through using cryopreserved sperm. We aim to evaluate feasibility of offering newly diagnosed patients the opportunity to bank sperm and, to determine the beliefs and decision‐making processes of patients and their parents who considered sperm banking.

Fertility in males treated for Hodgkins disease with COPP/ABV hybrid

More than 80% of those diagnosed with Hodgkins disease (HD) will survive long‐term. For the past decade, a modified hybrid consisting of cyclophosphamide (2.4–3.6g/m2), vincristine, procarbazine, and prednisone (COPP) together with adriamycin, bleomycin, and vinblastine (ABV) has been used to treat patients with HD. Little data exists on how this modified hybrid impacts male fertility. Eleven male patients treated with COPP‐ABV hybrid were studied. Nine out of 11 subjects were categorized as infertile by semen analysis; 7 of 9 were azoospermic. There was no association between fertility status and prepubertal status at diagnosis or gonadotropin status. Despite lower doses of cyclophosphamide, treatment with the current COPP/ABV hybrid leads to infertility in the majority of young men. It is likely that procarbazine, an effective yet potent gonadotoxic agent, is responsible for this outcome.

Fertility preservation for patients with cancer.

A key concern for young patients with cancer and survivors is the desire to parent a child. With infertility being a well-established long-term effect of many oncologic regimens, patients who want to have children often become distressed when faced with the possibility of losing their fertility. Several organizations have recommended that oncology professionals discuss options for fertility preservation when planning treatment; however, this does not routinely occur. Oncology nurses play a significant role in filling this practice gap by identifying patients who are interested in future parenting and ensuring they get the information and referrals they need to decide whether to pursue fertility preservation. This article outlines the available options, challenges in discussing fertility, and strategies to incorporate fertility education into practice.

Self-Reported Health Problems of Young Adults in Clinical Settings: Survivors of Childhood Cancer and Healthy Controls

Purpose: Increasing numbers of childhood cancer survivors are being seen in primary care settings as young adults. It is unknown how their self-reported health problems differ from those of healthy young adults. Self-reported health problems of cancer survivors and healthy controls are compared in this study. Methods: 156 cancer survivors visiting a cancer survivorship program and 138 controls in primary care centers (mean age, 20 years) completed the Health Knowledge Inventory, a checklist of 35 health problems. Results: Cancer survivors reported significantly more health problems than healthy controls (5.6 vs 2.6 problems; P < .001). For cancer survivors, more intense treatment and older age related to Organic/Major problems and Constitutional/Other problems. Female sex related to report of Organic/Major problems and Constitutional/Other problems for the controls. Although at least 20% of both healthy controls and survivors endorsed dermatologic, headache, gastrointestinal, and weight problems, survivors endorsed growth, thyroid, kidney, immunologic, heart, and fertility problems 4-fold over controls. Conclusions: Cancer survivors endorse significantly more health problems than do healthy controls. However, some problems are reported with equal frequency among the groups. Understanding these similarities and differences between survivors and healthy controls will facilitate patient-centered comprehensive care for young-adult cancer survivors.

Implementing a Care Coordination Program for Children with Special Healthcare Needs: Partnering with Families and Providers

Abstract: Care coordination has been a key theme in national forums on healthcare quality, design, and improvement. This article describes the characteristics of a care coordination program aimed at supporting families in building care coordination competencies and providers in the coordination of care across multiple specialties. The program included implementation of a Care Coordination Counselor (CC Counselor) and several supporting tools—Care Binders, Complex Scheduling, Community Resources for Families Database, and a Care Coordination Network. Patients were referred by a healthcare provider to receive services from the CC Counselor or to receive a Care Binder organizational tool. To assess the impact of the counselor role, we compared patient experience survey results from patients receiving CC Counselor services to those receiving only the Care Binder. Our analysis found that patients supported by the CC Counselor reported greater agreement with accessing care coordination resources and identifying a key point person for coordination. Seventy‐five percent of CC Counselor patients have graduated from the program. Our findings suggest that implementation of a CC Counselor role and supporting tools offers an integrative way to connect patients, families, and providers with services and resources to support coordinated, continuous care.

Sperm Banking for Adolescents With Cancer

Recent advances in diagnostic and therapeutic methods in pediatric oncology have led to greater survival rates in children with malignancies. However, major long-term complications can occur that limit the quality of survival, infertility being one of them. Chemotherapy, radiation treatment, surgery, and combinations of these treatments have been implicated in causing infertility, with males being especially sensitive to therapy. Cryopreservation of semen, or sperm banking, is an easy, widely available means to preserve fertility for adolescent and young adult males with cancer. In this article, the pertinent literature is reviewed, and a sperm-banking program is described. Recommendations are offered for institutions attempting to develop a successful program, and the nurses role in education and facilitation is discussed.

Competence in caregivers of adolescent and young adult childhood brain tumor survivors.

OBJECTIVE Caregivers of adolescents and young adults (AYA) with complex medical conditions, including brain tumor survivors, have protracted and often complex roles, yet a gap exists in understanding their perceived competence. The aim of this study is to test a hypothesized model based on the theoretical and empirical literature: better caregiver health, better survivor health, and better family functioning contribute directly to fewer caregiving demands, which in turn contribute to greater caregiver competence. METHOD Telephone interviews using structured self-report questionnaires were conducted in this cross-sectional study with a sample of 186 caregivers (mothers) of childhood brain tumor survivors aged 14-40 years old who live with at least one parent. Structural equation modeling (SEM) was used to test the hypothesized model. RESULTS The final SEM model suggests that survivor health and family functioning directly predict caregiver competence. Caregiver health indirectly predicts caregiver competence through caregiver demands and then family functioning. Family income directly predicts family functioning. The model showed adequate fit (CFI = 0.905, TFI = 0.880, and RMSEA = 0.081). Overall, the model accounted for 45% of variance in caregiver competence. CONCLUSIONS For this sample of caregivers of AYA with medically complex conditions, family functioning and the health of survivors are both important to how they evaluate their skills as caregivers. The results of this study underscore the crucial role of care models that focus on optimizing the health of the survivor, caregiver, and family, along with supporting a family centered approach to their care.

FERTILITY CONCERNS FOR YOUNG MALES UNDERGOING CANCER THERAPY

OBJECTIVES To review the treatment factors that can affect male fertility, and the practices at a large metropolitan childrens hospital that has successfully developed a sperm banking program. The role of the nurse in the education of families and facilitating the sperm banking process will be described. DATA SOURCES Review of the literature and anecdotal information. CONCLUSION Because of increased survival rates over the past three decades in children diagnosed with cancer, the importance of preserving fertility has become paramount in the minds of health care providers, families, and patients. IMPLICATIONS FOR NURSING PRACTICE Early identification and prompt referral for sperm banking by nurses are key factors in helping young male adolescents with cancer.

Identifying the Educational Needs of Parents at the Completion of Their Child’s Cancer Therapy

For parents of children with cancer, the experience of completing treatment can be a time of celebration and hope as well as anxiety and fear. Previous research has identified the time immediately following completion of therapy as one of the most difficult and anxiety producing periods in parents’ trajectory of cancer treatment. A gap in knowledge exists to guide nursing practice regarding parents’ educational needs. The purpose of this study was to (a) determine the educational needs of parents as their children completed cancer treatment and (b) assess the feasibility of measuring parental educational needs, anxiety, and family management styles as treatment ends. The results support previous findings that parents are anxious at the end of therapy. Fear of relapse was their primary concern. Although parents desire education at the end of therapy, attention to parental readiness to learn and the individual needs of the patient and family must be considered. In the feasibility portion of this study, parents were able to complete the questionnaires with no negative feedback provided.

Consensus statements: The Family Management Style Framework and its use with families of children with cancer

amilies face many challenges when a child hasa chronic illness such as childhood cancer. The chal-lenges may include physiological changes in the childdue to treatment, interruption in the child’s develop-mental progress, alterations of the family’s day-to-dayactivities, and revisions in future goals. In the mid1980s, Knafl and Deatrick launched a program ofstudy to understand ways in which families respond tosuch challenges when a child has a chronic illness.This research has led to the description of 5 patternsof response to chronic illness, or 5 family managementstyles (FMS): Thriving, Accommodating, Enduring,Struggling, and Floundering (Knafl, Breitmayer,Gallo, & Zoeller, 1996). More recently, Deatrick andcolleagues have been applying the FMS Framework inwork with families who have a child with cancer tobetter understand their experience and to tailor inter-ventions for the family during the child’s cancer illnesstrajectory.The preconference workshop at the 26th AnnualConference of the Association of Pediatric OncologyNursing, held in 2002, focused on the developmentand application of FMS to families of children withcancer. After the workshop, the presenters reviewedthe concepts and developed summary consensusstatements. The consensus statements are as follows:1. Childhood cancer is represented by differenttypes of illness situations and disease manage-ment strategies.2. Health care professionals follow specific treat-ment protocols and tend to expect the child andfamily to react similarly to the informationpresented to them.3. A one-size-fits-all approach, however, is inade-quate, given that different families have differentneeds.4. Variationinfamilyresponsetochildhoodcancerresults from differences in how families and insome cases family members define and managethe illness situation.5. It is important to identify each individualfamily member’s needs and how these differentneeds contribute to the total family’s responseto the child’s cancer diagnosis and treatmentplans.Downloaded from jpo.sagepub.com