The <Emphasis Type="Italic">Pathways</Emphasis> fertility preservation decision aid website for women with cancer: development and field testing

Purpose

To improve survivors’ awareness and knowledge of fertility preservation counseling and treatment options, this study engaged survivors and providers to design, develop, and field-test Pathways: a fertility preservation patient decision aid website for young women with cancer©.

Methods

Using an adapted user-centered design process, our stakeholder advisory group and research team designed and optimized the Pathways patient decision aid website through four iterative cycles of review and revision with clinicians (n = 21) and survivors (n = 14). Field-testing (n = 20 survivors) assessed post-decision aid scores on the Fertility Preservation Knowledge Scale, feasibility of assessing women’s decision-making values while using the website, and website usability/acceptability ratings.

Results

Iterative stakeholder engagement optimized the Pathways decision aid website to meet survivors’ and providers’ needs, including providing patient-friendly information and novel features such as interactive value clarification exercises, testimonials that model shared decision making, financial/referral resources, and a printable personal summary. Survivors scored an average of 8.2 out of 13 (SD 1.6) on the Fertility Preservation Knowledge Scale. They rated genetic screening and having a biological child as strong factors in their decision-making, and 71% indicated a preference for egg freezing. Most women (> 85%) rated Pathways favorably, and all women (100%) said they would recommend it to other women.

Conclusions

The Pathways decision aid is a usable and acceptable tool to help women learn about fertility preservation.

Implications for Cancer Survivors

The Pathways decision aid may help women make well-informed values-based decisions and prevent future infertility-related distress.

     

Functional outcomes and satisfaction after abdominal hysterectomy.

OBJECTIVES: Our aim was to compare urinary, lower gastrointestinal, and sexual function and to describe patients' expectations and satisfaction before and after hysterectomy. STUDY DESIGN: Forty-three women completed questionnaires before and about 1 year after abdominal hysterectomy for benign gynecologic conditions. Symptoms related to urinary, lower gastrointestinal, and sexual function and satisfaction with treatment were assessed. To account for multiple comparisons, only P 相似文献   

Sisters Peer Counseling in Reproductive Issues After Treatment (SPIRIT): a peer counseling program to improve reproductive health among African American breast cancer survivors

BACKGROUND:

African American breast cancer survivors may be at high risk for reproductive health problems, including menopause symptoms, sexual dysfunction, and distress about cancer‐related infertility. The authors partnered with Sisters Network Inc. to create the Sisters Peer Counseling in Reproductive Issues After Treatment (SPIRIT) program, a culturally sensitive intervention program that combined a written workbook and peer counseling.

METHODS:

Three hundred women were randomized to receive either the workbook plus 3 in‐person sessions with a trained peer counselor or the workbook plus ≤30 minutes of telephone counseling to be initiated by the participant. Questionnaires at baseline, post‐treatment, and at 6‐month and 12‐month follow‐up assessed emotional distress, sexual function, relationship satisfaction, spirituality, menopause symptoms, and knowledge. Satisfaction with the program and the use of medical care also were assessed.

RESULTS:

Both groups of women improved significantly in knowledge, decreased in distress, and had decreased hot flashes. Sexually active women had improved sexual function at 6‐month follow‐up but not at 1 year. However, peer counseling had little incremental benefit over the telephone counseling.

CONCLUSIONS:

The SPIRIT program was rated very useful by 66% of women. Outcomes justify continued use of the workbook and further research to optimize the impact of peer counseling. Cancer 2011;. © 2011 American Cancer Society.     

A pilot randomized trial to prevent sexual dysfunction in postmenopausal breast cancer survivors starting adjuvant aromatase inhibitor therapy

Purpose

A randomized pilot trial evaluated the hypothesis that early intervention lessens sexual dysfunction in the first year on aromatase inhibitors. A secondary aim was comparing the efficacy of two vaginal moisturizers.

Methods

Fifty-seven postmenopausal women with early stage breast cancer starting aromatase inhibitors were randomized to three treatment groups. All received a handout on managing sexual and other side effects. The Usual Care group received no additional therapy. The Active Treatment groups received a 6-month supply of a vaginal moisturizer (hyaluronic acid-based in Active Group-H and prebiotic in Active Group-P) and a vaginal lubricant and dilator, plus access to an educational website and phone coaching. Questionnaires completed at baseline, 6, and 12 months included the Female Sexual Function Index (FSFI), Menopausal Sexual Interest Questionnaire (MSIQ), Female Sexual Distress Scale-Revised (FSDS-R), and a menopausal symptom scale.

Results

Forty-nine women (86%) provided follow-up data. Mean age was 59 and 77% were non-Hispanic Caucasian. Sexual function was impaired at baseline, but remained stable over 12 months for all groups. The combined active treatment group had less dyspareunia (P = 0.07) and sexual distress (P = 0.02) at 6 months than the Usual Care group. At 6 months, the Active-H group improved significantly more than the Active-P group on FSFI total score (P = 0.04).

Conclusions

Sexual counseling helped women maintain stable sexual function on aromatase inhibitors. Active intervention resulted in better outcomes at 6 months.

Implications for Cancer Survivors

This promising pilot trial suggests a need for more research on preventive counseling to maintain sexual function during aromatase inhibitor treatment.

     

Needs assessment survey to justify establishing a reproductive health clinic at a comprehensive cancer center

IntroductionReproductive health problems, including sexual dysfunction and impaired fertility, are distressing and persistent after cancer treatment. However, recent reports suggest that reproductive health remains neglected in oncology settings.AimsWe conducted a survey to ascertain the prevalence of reproductive health problems in men and women treated in a comprehensive cancer center, and to estimate potential usage of clinical services to preserve fertility or to treat postcancer infertility and sexual dysfunction.MethodsWe mailed 800 questionnaires to men and women treated for cancer at our institution 1 to 5 years previously. Cancer sites and ages were chosen to maximize the risk of reproductive problems. We stratified the sample by living distance from our institution, to see if travel affected service utlilization. To provide a self-selected sample for comparison, another 200 questionnaires were made available in outpatient areas.Main Outcome MeasuresSelf-report questionnaire.ResultsThe return rate for the combined surveys was 29% for men and 26% for women. Cancer sites for self-selected respondents were almost identical to those in the postal cohort. Prevalence and types of sexual dysfunction were typical for surveys of cancer survivors, with 49% of men reporting new erection problems after cancer treatment and 45% of women noting loss of desire for sex and vaginal dryness. About a third of patients aged less than 50 years would have liked a fertility consultation before cancer treatment. Twenty to thirty percent wanted more information about premature ovarian failure or health risks for their children. Twenty-four percent of men and 21% of women would definitely want to visit a reproductive health clinic in the next year. Factors associated with wanting an appointment included self-selection to complete the survey and, for men, having less education.ConclusionIt should be feasible to establish a multidisciplinary reproductive health center in a comprehensive cancer center. Huyghe E, Sui D, Odensky E, and Schover LR. Needs assessment survey to justify establishing a reproductive health clinic at a comprehensive cancer center.     

Banking on Fatherhood: pilot studies of a computerized educational tool on sperm banking before cancer treatment

Objectives: We conducted pilot studies of the feasibility and efficacy of an interactive, computerized educational tool, Banking on Fatherhood (BOF). Methods: Two small randomized trials were conducted, with 20 male cancer patients eligible to bank sperm in Study 1 and 19 oncology fellows or residents in Study 2. In each trial, half of the subjects viewed BOF before completing questionnaires, and half viewed it afterward. Outcome measures included a knowledge test in both trials and a Decisional Conflict scale in the patient trial. All participants, plus a panel of 10 experts, ultimately viewed BOF and completed a form evaluating its usability and value. Results: Patients who completed questionnaires after viewing BOF had significantly less decisional conflict about banking sperm than those who had not viewed it (P=0.0065), but knowledge scores were not significantly different between groups. Physicians who filled out questionnaires after viewing BOF scored significantly higher on the knowledge test (P<0.006). Patients, physicians and experts rated BOF as easy to use, informative and addressing important psychosocial concerns, with videos and animations adding to the value of the educational tool. Conclusion: Pilot studies suggest that BOF is a feasible intervention that could enhance decisions about sperm banking. Research with larger groups is needed to validate its effectiveness. Copyright © 2008 John Wiley & Sons, Ltd.     

Sexual rehabilitation in a cancer center: Diagnosis and outcome in 384 consultations

A program of sexual rehabilitation in a cancer center evaluated 308 men and 76 women, using a structured interview. The site of the malignancy was pelvic or genital in 79% of men and 58% of women. Most patients (73%) had one or two sessions of sexual counseling, but therapy was more intensive for about a quarter of patients. Partners were included in counseling by 28% of women and 56% of men. Although cancer patients and spouses of patients reported similar rates of sexual dysfunction before cancer diagnosis, after cancer treatment husbands and wives of patients maintained stable sexual function, while dysfunctions increased dramatically in all categories except premature ejaculation for patients. Patients who were older or had pelvic/genital tumors were more likely to develop arousal-phase sexual dysfunctions. Psychological distress was correlated with rates of low sexual desire and dyspareunia in both men and women. The success of treatment in reversing sexual dysfunction was rated by the therapist in 118 cases. Patients who were younger, who were not clinically depressed, and who had less conflicted marriages had more positive outcomes. Good outcome was also associated with a longer duration of treatment.     

Sexual dysfunction and treatment for early stage cervical cancer

Assessment of sexual frequency, function, and behavior, as well as martial happiness and psychological distress was performed for 61 women with early stage, invasive cervical cancer at the time of diagnosis. Cancer treatment was radical hysterectomy alone for 26 women and radiotherapy with or without surgery for 37. Followups took place at 6 and 12 months after cancer therapy. Women's sexual satisfaction, capacity for orgasm, and frequency of masturbation remained stable, whereas frequency of sexual activity with a partner and range of sexual practices decreased significantly by one year. Women who received irradiation with or without surgery resembled women who underwent radical hysterectomy alone at 6 months. By one year, however, the radiotherapy group had developed dyspareunia, which was reflected in gynecologist ratings at pelvic examination. The women receiving radiotherapy also had more problems with sexual desire and arousal, and were less likely to resume several daily life activities. Cancer treatment modality was not related to marital happiness or stability, however.     

Psychosocial aspects of infertility and decisions about reproduction in young cancer survivors: a review.

BACKGROUND: Several types of cancer treatment interfere with male and female fertility or can complicate pregnancy. Rates of birth defects and cancer have also been studied in the offspring of cancer survivors. Little is known, however, about the impact of a history of cancer on survivors' attitudes, anxieties, and choices about having children of their own. PROCEDURE: We review the relevant literature on cancer survivor's concerns about infertility and childbearing and propose areas for future research. RESULTS: We generate several hypotheses, including that cancer survivors will be more distressed than infertility patients without a major medical disorder, that survivors diagnosed in adolescence will have the most anxieties about parenthood, that women will be more distressed over infertility and more concerned about their children's health than men, that survivors who rate their overall quality of life more negatively will be less concerned about infertility and more apt to decide to forego parenthood, that survivors of inheritable cancer syndromes will have more distress about childbearing issues than other survivors, and that survivors who do have children after treatment will perceive them more positively than do parents who have not confronted cancer. CONCLUSIONS: Research on the emotional aspects of infertility after cancer and on the factors that influence survivors' decisions about having children assumes increasing importance with the growth in number of survivors of reproductive age.