Bridgette Thom

Cancer and Fertility Program Improves Patient Satisfaction With Information Received

PURPOSE A cancer and fertility program was established at a large cancer center to support clinicians in discussing treatment-related fertility risks and fertility preservation (FP) options with patients and in referring patients to reproductive specialists. The program provides resources, clinician education, and fertility clinical nurse specialist consultation. This study evaluated the programs impact on patient satisfaction with information received. PATIENTS AND METHODS Retrospective cross-sectional surveys assessed satisfaction before (cohort 1 [C1]) and after (cohort 2 [C2]) program initiation. Questionnaires were investigator-designed, gender-specific, and anonymous. RESULTS Most C1 (150 males, 271 females) and C2 (120 males, 320 females) respondents were 2 years postdiagnosis; the most frequently reported cancers were testicular, breast, and lymphoma. A significant difference in satisfaction with the amount of information received was seen between C1 and C2. For males, satisfaction with information on fertility risks was high in both cohorts but significantly greater in C2 for information on sperm banking (χ(2) = 9.3, P = .01) and finding a sperm bank (χ(2) = 13.3, P = .001). For females, satisfaction with information was significantly greater in C2 for information on fertility risks (χ(2) = 62.1, P < .001), FP options (χ(2) = 71.9, P < .001), help with decision making (χ(2) = 80.2, P < .001), and finding a reproductive endocrinologist (χ(2) = 60.5, P < .001). Among patients who received and read information materials, 96% of males and 99% of females found them helpful. Among C2 females, fertility clinical nurse specialist consultation was associated with significantly greater satisfaction with information on FP options (χ(2) = 11.2, P = .004), help with decision making (χ(2) = 10.4, P = .006), and finding a reproductive endocrinologist (χ(2) = 22.6, P < .001), with 10% reporting lack of knowledge as a reason for not pursuing FP. CONCLUSION Improvements in patient satisfaction with information received demonstrate the potential for fertility programs in cancer care settings to improve the quality of clinician-patient discussions about fertility.

Young adult female cancer survivors' unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation.

Many young adult female cancer survivors (YAFCS) are at risk of experiencing premature menopause. The current study characterized the posttreatment fertility information needs, reproductive concerns, and decisional conflict regarding future options for posttreatment fertility preservation (FP) among YAFCS.

Prospective study of vaginal dilator use adherence and efficacy following radiotherapy

BACKGROUND AND PURPOSE Vaginal stenosis (VS) after pelvic radiotherapy (RT) can impair long-term quality of life. We prospectively assessed adherence and efficacy of vaginal dilator (VD) use in women after pelvic RT. MATERIAL AND METHODS Women with gastrointestinal (n=63) and gynecologic (n=46) cancers self-reported use and VD size in monthly diaries for 12months after radiotherapy. Adherence was measured as actual VD use out of recommended times over 12months (3×/week×52weeks=156). RESULTS Among 109 participants, aged 28-81years (median, 58years), mean percent adherence over 12months was 42% (95% confidence interval [CI], 36-48%). Adherence was highest in the first quarter (56%), but fell to 25% by the fourth. Disease type, treatment sequence, and chemotherapy were predictors of adherence (all P<.05). Eighty-two percent maintained pre-RT VD size at 12months; of 49% with a decrease in VD size at 1month post-RT, 71% returned to pre-RT VD size at 12months. Disease type, younger age, and increased adherence at 6months were associated with maintaining or returning to pre-RT size at 12months (all P⩽.05). CONCLUSION VD use is effective in minimizing VS, but adherence at 12months was poor. Studies evaluating methods of improving adherence and determining the optimal frequency and duration of use are needed.

Young Adult Female Cancer Survivors' Decision Regret About Fertility Preservation

This study evaluated fertility-related experiences of young adult female cancer survivors (18-39 years). Data were from a retrospective, cross-sectional survey. Women were more likely to undergo pre-treatment fertility preservation (FP) if they received fertility counseling (by a fertility nurse specialist, reproductive endocrinologist, or gynecologist). Compared with women who underwent FP, those who did not had greater decision regret (DR) after treatment (p < 0.001). Multiple reasons for not pursuing FP were reported; lack of time and distress related to more DR and not wanting children in the future related to less DR (p < 0.05). Decision regret may lead to psychosocial morbidity in survivorship.

Caregiver Burden in End-Stage Ovarian Cancer

BACKGROUND Caregiver burden associated with caring for women with ovarian cancer has received limited focus. However, these patients often have complex needs, requiring a high level of care at home and imposing substantial burdens on caregivers. OBJECTIVES This pilot study assessed the level of caregiver burden experienced by the primary caregivers of patients with end-stage ovarian cancer and identified variables associated with caregiver burden. METHODS Caregiver burden was assessed using the Caregiver Reaction Assessment. Fifty caregivers completed an anonymous and voluntary survey. Pearson correlations and independent samples t tests were used to analyze data. FINDINGS Most participants were Caucasian, married or living with a partner, and college graduates, with an annual household income of less than

Consensus Statements: Ambulatory Pediatric Oncology Nursing Practice

90,000. Caregiver ages ranged from 29-81 years. Participants agreed most with the self-esteem scale, indicating they had pride in caring for their loved ones. Disrupted schedules and financial problems were the most burdensome factors in providing care. Because financial issues affected caregiver burden, nurses should facilitate interdisciplinary support. Future research is needed to determine the impact of nurse-led interventions to reduce caregiver burden.

Fertility preservation and cancer: challenges for adolescent and young adult patients.

The pre-conference workshop at the 32nd Annual Conference of the Association of Pediatric Hematology/Oncology Nursing, held in September 2008, focused on issues faced by pediatric oncology nurses in the ambulatory setting. The workshop was developed after several years of intense discussions at several forums. Therefore the need for an extended discussion period with ambulatory pediatric oncology nurses across the country to address these concerns was evident. There has been a major shift over the past ten years from inpatient to outpatient treatment in oncology (Chabot & Fox, 2005). This shift has resulted in numerous unique challenges for the pediatric oncology nurse. Challenges include lack of staffing resources for fluctuating patient volume and acuity, telephone triage volume and management, home care patient issues, scheduling systems, patient flow and wait time, and multi-institutional communication. This article reports the results of the APHON workshop which utilized the evidence from adult ambulatory oncology literature and standards and the recommendations of the expert pediatric oncology nurse participants to develop global statements about pediatric oncology ambulatory practice standards. The energy and productivity of the group was evidence of a common theme and demand for attention to the ambulatory nursing staff and practice. The ability to identify common threads and reach consensus with powerful statements of practice supports the continued use of such forums to move practice forward.

Role of the simple, self-designed questionnaire in nursing research.

Purpose of reviewWith increasing survival rates, fertility is an important quality of life concern for many young cancer patients. There is a critical need for improvements in clinical care to ensure patients are well informed about infertility risks and fertility preservation options and to support them in their reproductive decision-making prior to treatment. Recent findingsSeveral barriers prevent fertility from being adequately addressed in the clinical context. Providers’ and patients’ incomplete or inaccurate understanding of infertility risks exacerbate patients’ reproductive concerns. For female patients in particular, making decisions about fertility preservation before treatment often leads to decision conflict, reducing the likelihood of making informed, value-based decisions, and posttreatment regret and distress. Recent empirically based interventions to improve provider training around fertility issues and to support patient decision-making about fertility preservation show promise. SummaryProviders should be knowledgeable about the infertility risks associated with cancer therapies and proactively address fertility with all patients who might one day wish to have a child. Comprehensive counseling should also include related issues such as contraceptive use and health implications of early menopause, regardless of desire for future children. Although the negative psychosocial impact of cancer-related infertility is now well accepted, limited work has been done to explore how to improve clinical management of fertility issues in the context of cancer care. Evidence-based interventions should be developed to address barriers and provide psychosocial and decision-making support to patients who are concerned about their fertility and interested in fertility preservation options.

The intersection of financial toxicity and family building in young adult cancer survivors: Financial Toxicity and Family Building

Simple, self-designed questionnaires can serve a variety of purposes within nursing research. Self-designed questionnaires allow researchers to quickly, effectively, and inexpensively evaluate programs, collect pilot data, and survey accessible populations. This article discusses the role of self-designed questionnaires in simple research studies. Suggestions for designing questions and answers that are adequate measures of the topic of interest are offered. Examples of questionnaires from recent pilot surveys and evaluation projects are presented.

“Creating a family after battling cancer is exhausting and maddening”: Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment

INTRODUCTION The convergence of financial toxicity and family-building difficulties after cancer creates unique challenges for young adult (YA; individuals aged 18-39 years) cancer survivors. Financial toxicity, the economic distress or hardship resulting from cancer treatment, has been reported among YA survivors at alarming rates; at the same time, YAs who experience fertility impairment as a result of treatment may in addition face costly family-building options. These combined financial pressures can have significant effects on family-building decisions and financial outcomes in both the short-term and long-term. Herein, we describe how financial toxicity and the fertility-related side effects of treatment can co-occur among YA cancer survivors and propose steps to alleviate the distress associated with this intersection.