Sexual information and counselling needs among cancer outpatients and their significant others
Nanna Friðriksdóttir
Oncology Clinical Nurse Specialist, RN, MSc Assistant Clinical Professor of Oncology Nursing Landspítali - The National University Hospital of Iceland
European Cancer Rehabilitation & Survivorship Symposium 2012
Copenhagen, September 17th
Co-authors
Jóna Ingibjörg Jónsdóttir, RN, MSc, Sexuality Counsellor
Þórunn Sævarsdóttir, RN, MSc
Þóra Þórsdóttir, RN, MSc
Sigríður Zoëga, RN, MSc, PhDstud
Sigríður Gunnarsdóttir, RN, PhD
Background
Sexuality problems among cancer patients: 40-100%
A longitudinal QOL study (CARES-SF) among Icelandic cancer patients during chemotherapy showed that the sexual QOL-dimension was most affected and >50% had problems with sexual attractiveness, sexual
interest and sexual performance (Saevarsdottir, etal, 2010)
Cancer patients (30-70%) want information and open communication about sexual issues (Flynn et al, 2012; Harrison etal, 2009; Huyghe, etal, 2009., Park etal, 2009)
Although cancer care providers and patients acknowledge the importance of discussing sexual issues, both groups seldom report doing so (Flynn et al, 2012;
Hautamäki, K etal, 2007; Kotronoulas, etal, 2009; Park etal, 2009)
At Landspítali no specific guidelines exist about the assessment and
management of cancer-related sexuality issues and little is known about how Icelandic cancer health care providers address them
Sexuality and Cancer
Project integrating oncosexology into cancer care
A two-year project was started in January 2011 with support from two companies
Project team: medical, surgical and gynecological oncology
Sexuality counselor (20%) hired for 2 years
A group of 25 interested key-staff/change-agents identified
Overall goal was to integrate and improve communication and counseling on sexuality and cancer in the daily care of
patients:
- by educating and training professionals to identify and address sexual health problems
- by offering the services of a specialized sexuality counselor
Main implementation
A web-site www.kynlifogkrabbamein.is
Two workshops and lectures by Woet Gianotten with key-staff and patients
Educational meetings on clinical units
Staff pocket-guides: communication about sexuality-related issues
Patient education material revised and developed
Meetings with patient-support groups
Service of sexuality counsellor advertised
Outcomes
- Staff surveys: practices and attitudes/opinions
(see poster Sexuality and Cancer: A project integrating oncosexology into cancer care)
- Chart documentation
- Practices of the sexuality counsellor
- Surveys among patients/significant others
Time frame from January 2011 – May 2012
Time 1 (T1)
January 2011 Week 4-44 2011
Time 2 (T2) November 2011
Week 1-19 2012
Time 3(T3) May2012
Baseline survey
Patients &
significant others (N= 145)
Staff (N=206)
Workshop Website Meetings
Pocket guides Patient
education
Second survey
Patients & SO (N = 134)
Staff (N= 216)
Workshop Meetings
Third survey
Patients & SO (N =166)
Staff (N =210)
Survey among cancer outpatients and significant others Purpose
To examine whether cancer outpatients during
chemotherapy or radiation and their significant others
receive too little , adequate or too much information about the effects of cancer/treatment on sexuality
To examine satisfaction with resources offered for sexual problems
To examine the interest/need for specialized sexuality counselling
Method
Data collected at three time points during project time
Patients coming for treatment and attending significant other were offered to participate in a survey on how information and support needs were met by health professionals on the ward
A self-report questionnaire designed to measure common information and support needs. Six questions relate to
sexuality issues.
Data analysis: SPSS, descriptive statistics (%, means), Chi-test for categorical variables and t-test for independent samples.
Questionnaire: Sexuality items
Four information needs rated on a scale whether received information is too little, adequate, too much or not relevant
- Effects of cancer and treatment on physical appearance - Effects of cancer and treatment on fertility/infertility issues - Effects of cancer and treatment on sexual functioning/sex -life
- Effects of cancer diagnosis and treatment on relationships/marriage
Satifsfaction with resources offered for sexual problems rated on a 4 point agreement scale, or not relevant
The interest/need for specialized sexuality counselling rated on a 4 point agreement scale, or not relevant
Background and demographic: gender, age, patient/significant other, unit (RT/Chemo), diagnosis and time from diagnosis
Results Participants
Patients (N 363)
Female: 60%
Age (mean(sd), range):
- 62(11), 21-90 years
Time from dx (mean(sd), range):
- 29(44) 1-240 months
Medical onc/hem: 66%
Diagnosis: breast (30%), haematological (12%),
prostate (11%), lung (10%), colorectal (10%)
Significant others(N 65)
Female: 60%
Age: 58(11), 27-83
Time from pt dx: 13(23), 1-108
Medical onc/hem: 55%
1. Information received on the effects of cancer and treatment on physical appearance
Issue not considered relevant by 11% patients and 8% significant others Too little Adequate
n (%) n(%)
Patient
Significant other
66(22%) 13(23%)
241 (78%) 44(77%)
2. Information received on the effects of cancer and treatment on fertility/infertility issues
Not considered relevant by 47% patients and 54% significant others Too little Adequate
n (%) n(%)
Patient
Signficant other
50(28%) 8(29%)
127(72%) 20(71%)
3. Information received on the effects of cancer and treatment on sexual functioning/sex-life
Not considered relevant by 30% of patients and 43% significant others
Too little Adequate
n (%) n(%)
Patient
Significant other
87 (37%) 11 (33%)
148 (63 %) 22(67%)
4. Information received on the effects of diagnosis and treatment on relationships/marriage
Not considered relevant by 24% patients and 22% significant others
Too little Adequate
n (%) n(%)
Patient
Significant other
128(51%) 24(53%)
122(49%) 21(47%)
5. Satisfaction with resources offered for sexuality problems?
Not considered relevant by 57% of patients and 57% significant others
Agree n (%)
Disagree n (%) Patient T1
T2 T3
20 (50%) 24 (57%) 40 (68%)
20 (50%) 18 (43%) 19 (32%) Total 84 (59 %) 57(40%)
Significant other
T1 T2 T3
3 (50%) 1 (50%) 3 (60%)
3 (50%) 1 (50%) 2 (40%) Total 7 (54%) 6 (46%)
6. Interest in the service of a sexuality counsellor
Issue not considered relevant by a total 52% of patients and 72% significant others
Agree n (%)
Disagree n (%) Patient T1
T2 T3
34 (69%) 24 (50%) 22 (42%)
15 (31%) 24 (50%) 31(58%) Total 80 (53%) 70(47%)
Significant other
T1 T2 T3
4(57%) 0
4(80%)
3(43%) 2(100%) 1(20%) Total 8(57%) 6 (43%)
Conclusion
• Unmet needs for sexuality related information was in the range of 20-50%
for both patients and significant others and did not change significantly over time
•For both groups the most common unmet need related to information on the effects of diagnosis and treatment on relationships/marriage at all time points
• Dissatisfaction with resources offered for sexuality problems was reported by 40% of patients and 46% of significant others
•Interest for specialized sexuality counselling was expressed by 53% of patients and 57% of significant others
• The only significant difference by time of study was for interest in the
service of a sexuality counsellor: fewer patients at T2 and T3 compared to T1 expressed the need. Does this indicate improvements by clinical staff !!
Clinical implications
The issue of sexuality is relevant to both cancer patients and significant others
In comparison to the need for other types of psychosocial support, information and counselling on sexuality is just as important
In spite of different efforts during the project-time many have their needs for information and resources in relation to sexuality not adequately met
So far in relation to this project the discussion of sexual health has not been fully integrated into daily care (see also results from staff surveys – poster)
Project group
Ásgerður Sverrisdóttir, MD Medical Oncology Guðmundur Vikar Einarsson, MD Urology
Guðlaug Sverrisdóttir, MD Gyneoncology
Sigríður Zoëga, RN, MSc, Phdstud, Surgical Oncology Þórunn Sævarsdóttir, RN, MSc, Medical Oncology
Þóra Þórsdóttir, RN, MSc, Medical Oncology
Jóna Ingibjörg Jónsdóttir, RN, MSc, Sexuality Counsellor Nanna Friðriksdóttir, RN, MSc, Oncology, project manager
