Sexual Morbidity Assessment in Gyne-Oncology Follow-Up: Development of the Sexual Well-Being After Cervical or Endometrial Cancer (SWELL-CE) Patient-Reported Outcome Measure
Authors: White Isabel Duncan , Tennant Alan , Taylor Cath 
Published: July 2020

Background

Clinical assessment and management of sexual difficulties after gynecological cancer remain a neglected aspect of women’s rehabilitation.

Aim

To develop and validate a patient-reported outcome measure of sexual well-being for women experiencing sexual consequences of cervical and endometrial cancer treatment for use in routine follow-up.

Methods

This is a sequential mixed method study comprising (i) in-depth qualitative interviews (n=21 of 118) to generate items regarding sexual consequences of cervical or endometrial cancer and treatment; (ii) questionnaire construction with 51 core items (all respondents) and 4 subsections (18–58 items), depending on the relationship status and whether or not participants were sexually active (SA/NSA); (iii) item refinement following cognitive debriefing (n=13 of 21); (iv) validation of resultant items via postal survey (n=788 women) and Rasch analysis; and (v) creation of brief (14-item) clinical screener. Women attending routine follow-up (3 months to 5 years) at 6 English cancer centers and members of 3 UK cancer patient websites, who met the study inclusion criteria, were invited to participate.

Outcomes

The primary outcome of this study was the construction and initial psychometric testing of SWELL-CE short and long form versions.

Results

21 women participated in interviews and 250 of 788 (32%) returned the postal survey (T1). 110 draft items were evaluated using cognitive testing (n=13) to refine instrument design and test face validity, comprehension, and acceptability. Exploratory factor analysis of survey data (n=250) produced an initial 6 domain structure as a guidance for the Rasch analysis. Subsequent Rasch analysis yielded a 3 domain structure: physical sexual function, sexual and relationship concerns, and sexual desire and sexual self-esteem, each satisfying Rasch model requirements within their respective SA (item pool =59) and NSA (item pool =53) categories, including the absence of local response dependency and all showing strict unidimensionality. The 3 subscales demonstrated good psychometric properties, external validity, and test-retest reliability. A valid Rasch short form of 14 items was created from the larger item pool.

Clinical Implications

This PROM may assist clinicians to improve identification, discussion, and management of women who could benefit from sexual rehabilitation.

Strengths & Limitations

Initial evaluation supports psychometric validity and reliability in the assessment of physical sexual function, sexual interest and sexual self-esteem, and sexual and relationship concerns in this study sample. However, given this study’s modest response rate (32%, n=250), findings should be interpreted with caution. This PROM identifies sexual concerns in women who are sexually active or sexually non-active due to illness or treatment-associated sexual difficulties.

Conclusion

Sexual Well-being after Cervical or Endometrial Cancer is a novel and psychometrically valid sexual well-being measure for clinical assessment of female sexual difficulties after cervical or endometrial cancer treatment.