The diagnosis and treatment of cancer causes significant physical, psychological, and social effects that interfere with a person’s sexuality. The EORTC Sexual Health Questionnaire (EORTC SHQ-22) was developed to assess sexual health in male and female cancer patients and cancer survivors. Questionnaire construction started with creating a list of relevant sexual health issues based on a comprehensive literature review. Issues were subsequently evaluated for relevance and prioritization by 78 health care professionals and 107 patients from 13 countries (phase 1), operationalized into 22 items (phase 2), pretested in a cross-cultural patient sample (n=171) using debriefing interviews (phase 3). A cross-cultural validation study was performed to evaluate the hypothesized scale structure and to test the psychometric properties (phase 4). A sample of patients 444 patients with different cancer diagnoses, at different stages of disease, and with different treatments were enrolled. The hypothesized scale structure was confirmed with two multi-item scales and 11 single items. The internal consistency was acceptable with Cronbach’s alpha of 0.90 for sexual satisfaction scale and 0.80 for the sexual pain scale. The EORTC QLQ SHQ-22 is a cross-culturally validated measure that can be used to assess SH of cancer patients in clinical trials as well as in clinical practice.
A literature search was performed on sexual health in cancer patients. The list including 53 issues was then prepared for interviews with patients and health care professionals (HCP) in 13 countries (21 institutions). 107 patients and 83 HCP reviewed the issues for feedback on appropriateness of content and breadth of coverage. The samples were representative and a cross-cultural balance was ensured. A total of 22 sexual health related issues were operationalized into questions with the format and time frame being compatible with the QLQ-C30. A preliminary scale structure was defined (sexual satisfaction, sexual pain, single items including gender-specific items). About 400 patients with different cancer sites have been recruited for Phase 4.
Phase 4 patient recruitment completed
Writing the validation paper
We have developed a questionnaire to assess various issues of sexual health that cancer patients and survivors may experience after treatment. Health professionals as well as patients with different social backgrounds from 13 countries were involved and provided feedback. The questionnaire including 22 items was tested in 444 patients with different cancer diagnoses and treatment modalities for its reliability and validity. The EORTC QLQ SHQ-22 showed good psychometric properties. It is a cross-culturally validated measure that can be used to assess sexual health of cancer patients in clinical trials as well as in clinical practice. The questionnaire may help patients to present their sexual health concerns and will be useful to address sexual health problems resulting from cancer and its treatment. This may help patients and the professionals to better communicate and understand the needs of cancer patients regarding a tabooed issue.
Oberguggenberger AS, Nagele E, Inwald EC, Tomaszewski K, Lanceley A, Nordin A, Creutzberg CL, Kuljanic K, Kardamakis D, Schmalz C, Arraras J, Costantini A, Almont T, Wei-Chu C, Dehandschutter S, Winters Z, Greimel E; EORTC Quality of Life Group.Phase 1-3 of the cross-cultural development of an EORTC questionnaire for the assessment of sexual health in cancer patients: the EORTC SHQ-22. Cancer Med. 2018 Mar;7(3):635-645. doi: 10.1002/cam4.1338. Epub 2018 Feb 13.PMID: 29436144