New Practice Guidelines on Sexual Health in Oncology
For many years, oncology care has lacked practice guidelines on how to care for cancer-related sexual problems. Guidelines on oncofertility have been available. The American Society of Clinical Oncology (ASCO) first published a practice guideline in 2006 urging that all patients of reproductive age be informed of potential damage to their fertility1 with an update in 2013 highlighting new techniques of fertility preservation.2 Damage to the ability to become a parent is always tragic, but because cancer becomes more common with aging, infertility is at issue for at most, 20% of patients. In comparison, over 60% experience negative changes in sexuality. Repeated surveys of cancer patients and survivors suggest that at best half recall any discussion with oncology professionals about the sexual side effects of cancer treatment.3 Sexual problems remain a major source of distress among cancer survivors.
The National Comprehensive Cancer Network (NCCN did include a practice guideline on sexual problems as one of eight survivorship guidelines published in 2013.4 Unfortunately, the assessment and treatment algorithm did not take into account issues of inadequate clinician training, personnel time, or insurance reimbursement for these services, which would take place during an already scheduled clinic visit. Now ASCO has published practice guidelines on sexual problems as a part of cancer care5 and NCCN has issued a more reasonable update to its previous guideline on sexual problems and menopause symptoms.6
The New Recommendations
Both guidelines recommend:
- Proactive Problem Identification: A member of the oncology team should initiate a discussion of sexuality and cancer during treatment planning and periodically at follow-up visits
- Appropriate Assessment as Needed: Further psychosocial and medical assessment should take place when a concern or problem is identified
- Referral for Multidisciplinary Care: Referrals should be offered for multidisciplinary specialty treatment, with problem-specific recommendations, since sexual problems frequently have both psychosocial and physiological causes.
The Continuing Gap Between Guidelines and Clinical Practice
ASCO and NCCN guidelines do increase awareness about the importance of sexual problems among oncology professionals, but they have few “teeth” and may not be widely implemented. In fact, several surveys conducted in the wake of ASCO’s original oncofertility guidance found that fewer than 50% of younger cancer patients recalled being informed that treatment might affect their fertility.2
Why is it so difficult to translate clinical practice guidelines to clinical practice? Key reasons include:
- Lack of training: Oncology professionals have little training in how to comfortably talk about sexual issues, assess problems, or make appropriate referrals for specialty care
- Experts are in short supply: Specialty clinicians (female or male sexual medicine and mental health professionals trained in sex, fertility, and cancer) are in short supply and are concentrated in major coastal cities or cancer centers
- Patients Do Not Speak Up: If the professional does not initiate the topic, only a small minority of patients are assertive enough to ask their questions about sexuality and cancer.
- Sexual Health Care in Oncology is Viewed as a Financial Liability: Institutions do not encourage discussion of sexuality because of fear that the extra time spent by staff will derail clinic schedules and will not be billable.
These barriers may seem insurmountable, but individual clinicians and health care organizations now have access to tools and techniques that can ensure guideline-based care is delivered efficiently (and sustainably) to patients.
Strategies for Success
Will2Love’s mission is to accelerate and streamline reproductive care in the cancer setting. To achieve this mission, we have developed an industry-first “reproductive care in a box" model. This model offers a range of strategies and tools that health professionals and medical professionals can use to deliver effective and high-quality care.
At the core of this model are two alternative treatment workflows that account for patients’ health literacy, ability to return for follow-up visits, and other factors, as outlined in the graphic below.
The workflows include:
- One Question for Problem Identification: Whether a visit occurs during treatment planning or subsequent follow-up, a sexual or fertility concern can be identified with one question from the oncology professional in a site-specific clinic or oncology practice setting: "Many patients have damage to their sex lives or fertility from cancer treatment. Are you concerned about either issue?” As soon as a concern is identified, the next step in the pathway can be implemented, whether it is to prescribe content, followed by a sexual assessment visit (good health literacy) or a more immediate sexual assessment with content prescribed with extra navigation if needed (poor health literacy or need to complete visits in short time period).
- Prescribing Educational and Self-Help Content: Patients with reasonable health literacy can benefit from timely, specific education, cognitive-behavioral strategies, and decision tools. Although some printable brochures and self-help books on sexuality and cancer are available, Will2Love’s online self-help interventions for men and women cover all cancer sites and treatments in an engaging platform that can be viewed across devices. A personalized goal-setting system guides the user to the highest priority information, which includes step-by-step self-help options to prevent or overcome sex or fertility problems, detailed explanations of how cancer treatment damages reproductive health and reviews of helpful medical treatments.
- Providing Personalized Assessment with a Trained Professional: Patient engagement is enhanced when a knowledgable oncology professional can discuss the problem and potential treatments during an assessment visit. A reproductive health assessment visit is a billable service that can subsidize the program using trained, advance practice oncology nurses or physician assistants. For most patients an ideal time frame would be for the visit to occur within 2-4 weeks of problem identification and prescription of the self-help content, to maximize the patient’s knowledge and give time for the patient to formulate questions. However, for patients with low health and/or computer literacy, or who cannot return easily to the oncology clinic, it may be optimal to have a same-day sexual assessment visit. Patients with poor health literacy can also be assigned to a navigator who can help them understand and implement the self-help program, perhaps using phone contacts between visits.
- Making Appropriate Referrals: A number of patients may require specialized care, including oncofertility, sexual medicine, and specialized mental health care. The practice guidelines review current treatment options and their evidence base. Oncology professionals who have not been trained may not know what type of care would be best and may not be familiar with the expertise of clinicians within a medical center or surrounding community. The trained professional who does the sexual assessment will have the skills and resources to make the best referrals, in line with the specific suggestions in the ASCO and NCCN guidelines.
Will2Love’s model not only meets but exceeds the ASCO guidelines. Our self-help programs discuss all of the options for treatment included in the guidelines for specific sexual problems. In addition, we offer:
- Online staff training: Will2Love’s PRO portal is an online resource that includes in-depth skill building on discussing reproductive health and cancer and a detailed clinician’s manual to facilitate using the self-help programs along with counseling and support.
- Consulting and ongoing supervision: Will2Love’s founder has had experience in structuring reproductive health programs at large institutions, so we can offer guidance to a site-specific clinic, oncology private practice, or cancer-center wide system.
- Potential for a positive return-on-investment: As we work with health care organizations, we hope to demonstrate that the combination of billing for sexual assessment visits and, for larger systems, the downstream revenue from sexual medicine and oncofertility care not only make a program sustainable, but profitable.
As the ASCO and NCCN sexual health and cancer guidelines become more widely disseminated, clinicians and health organizations will be grappling with how to implement the recommendations successfully. Will2Love provides efficient, sustainable and high-impact care management tools to meet this challenge.
- Lee SJ, Schover LR, Partridge AH, Patrizio P, Wallace WH, Hagerty K, Beck LN, Brennan LV, Oktay K; American Society of Clinical Oncology. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol 2006;24:2917-31.
- Loren AW, Mangu PB, Beck LN, Brennan L, Magdalinski AJ, Partridge AH, Quinn G, Wallace WH, Oktay K; American Society of Clinical Oncology. Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol 2013;31:2500-10.
- Reese JB, Sorice K, Beach MC, Porter LS, Tulsky JA, Daly MB, Lepore SJ. Patient-provider communication about sexual concerns in cancer: a systematic review. J Cancer Surviv 2017;11:175-188.
- Ligibel JA, Denlinger CS. New NCCN guidelines for survivorship care. J Natl Compr Canc Netw 2013;11(5 Suppl):640-4.
- Carter J, Lacchetti C, Andersen BL, Barton DL, Bolte S, Damast S, Diefenbach MA, DuHamel K, Florendo J, Ganz PA, Goldfarb S, Hallmeyer S, Kushner DM, Rowland JH. Interventions to address sexual problems in people with cancer: American Society of Clinical Oncology Clinical Practice Guideline Adaptation of Cancer Care Ontario Guideline. J Clin Oncol, December 11, 2017 [ePublication ahead of print].
- Denlinger CS, Baker KS, Baxi S, Broderick G, Demark-Wahnefried W, Friedman DL, Goldman M, Hudson M, Khakpour N, King A, Koura D, Kvale E, Lally RM, Langbaum TS, Melisko M, Montoya JG, Mooney K, Mislehi JJ, O’Connor T, Overholser L. Survivorship Version 2.2017. J Natl Compr Cancer Netw 2017;15:1140-63.
This educational material is intended for informational purposes only and is not intended to replace, or substitute for, professional advice, counseling, diagnosis, or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a condition. Never disregard professional advice or delay in seeking treatment because of something you have read in this educational material.
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