This blog will discuss two studies on the wishes and needs of cancer patients, survivors and partners regarding information on sexuality. With this knowledge we can (more actively) contribute to improve care concerning this topic.
Why did they do these studies?
It is well known that cancer has a negative impact on sexuality and therefore quality of life of both the patient and partner. This can be due to the cancer itself, the treatment, and psychological factors. Sexuality is not always discussed by health care professionals because there is within a lack of time or an uneasy feeling to discuss this topic.
In order to improve communication it is important to know what the wishes, needs of patients, survivors and partners are and their suggestions to improve communication.
How did they do these studies?
A survey with 28 questions (used in study 1 and 2) was developed.
- In study 1, cancer patients and survivors regardless of sex and type of cancer were invited to participate through a wide range of different channels, in The Netherlands.
- In study 2, partners of cancer patients were invited to participate.
What did this study find?
Study 1 included 2657 respondents.
- 45% men, mean age 66.6 years of which 44% had prostate cancer.
- 55% women, mean age 54.0 years of which 63% had breast cancer.
- 67% of all respondents reported a negative impact on sexuality.
- 65% of all respondents reported a need for information
- The highest need was in patients with gynecological cancer (84%) and in prostate cancer (72%)
- 71% of patients diagnosed up to 5 years and between six and 10 years ago, 69% reported a need for information. In 57% of patients diagnosed over 10 years ago reported a need for information (significant decline p=.02).
- No difference in need for information based on: gender, being in a relationship, stage of disease or treatment.
- Practical tips (60%), practical information (59%), and experiences of others (54%).
- Health care professional initiates discussing of this topic (34%).
- Information given systematically by health care provider (64%).
- Opportunity to get referral to sexologist (34%).
- Partner involved when sexuality is discussed (45%).
Study 2, included 230 of 564 invited partners (response rate 40%).
- Need for information (59.6%)
- No relation between need for information and age, stage of disease, time from diagnosis and type of treatment.
- Discuss problem with partner (69.3%).
- Talk to health care professional (9.3%), self-search for information (11.8%).
- Information given by health care professional systematically (71.5%).
- Active involvement of health care professional.
- 1% was interested in referral to a sexologist.
- More men (35%) than women (31.8%) were in need of practical advice.
What do these results mean?
If a cancer patient/survivor consults a specialized (pelvic but also oncology) physical therapist, sexuality is an important topic that should be discussed. Both the patient but also the partners stated that they want the discussion of sexuality initiated by the health care professional. Nearly 70% of patients/survivors expressed this need up to 10 years after diagnosis. As sexuality is part of the body of knowledge of the (pelvic/oncologic) physical therapist and we are trained in discussing sensitive issues like sexuality and cancer we can provide both the cancer patient/survivor and partners with valuable practical information. I would also recommend to show a trustworthy website to patients/survivors and/or partners where one can get information on sexuality and cancer as well.
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Leonore F. Albers, Mirjam A. van Belzen, Christel van Batenburg, Vivian Engelen, Hein Putter, Marjolein E.M. den Ouden, Rob C.M. Pelger, Henk W. Elzevier. Discussing Sexuality in cancer care: towards personalized information for cancer patients and survivors, Supportive Care in Cancer (2020) 28:4227-4233.
Leonore F. Albers, Mirjam A. van Belzen, Christel van Batenburg, Vivian Engelen, Hein Putter, Marjolein E.M. den Ouden, Rob C.M. Pelger, Henk W. Elzevier. Sexuality in Intimate Partners of People with Cancer: Information and Communication Needs: a Brief Communication, Journal of Sex & Marital Therapy, DOI: 10.1080/0092623X.2020.1828206.