Issues of intimacy and sexual dysfunction following major head and neck cancer treatment

doi:10.1016/j.oraloncology.2009.03.014

Oral Oncology

Volume 45, Issue 10, October 2009, Pages 898-903

https://doi.org/10.1016/j.oraloncology.2009.03.014 Get rights and content

Summary

Problems with sexuality and intimacy in head and neck cancer are under reported. This study set out to describe patients self-reporting of intimacy and sexual dysfunction following treatment and to explore associations with patient characteristics. Patients treated for primary head and neck squamous cell carcinoma, alive and disease free, were identified from the University Hospital Aintree Head and Neck Cancer database, January 2000 to December 2006. A postal survey with two questions from the European Organisation for Research and Treatment of Cancer Quality of Life questionnaire-Head and Neck 35 (EORTC H&N35) regarding sexuality, a self-designed question about intimacy and the University of Washington quality of life questionnaire Version 4 (UW-QOL v4) was sent to patients in March 2007. There was a 68% response (350/518). One-third of those answering the intimacy and sexuality questions reported substantial problems with sexual interest and enjoyment, and one-quarter reported problems with intimacy. Intimacy problems declined with age from 36% if aged under 55 years to 6% for those 75 years and older. Intimacy and sexuality issues were largely unrelated to site, stage of disease, treatment modality and time since surgery. Gender and having a spouse or partner were related to answering the questions but not to having problems. With one-quarter of responders reporting intimacy problems it is surprising how little information and support regarding intimacy and sexual dysfunction is offered to patients and their carers. There is a need to explore these issues more extensively with further research.

Introduction

Sexual well-being is important for the psychological rehabilitation of the surgical patient.[1], [2] However, most healthcare professionals fail to address this issue in the context of cancer due to paucity of knowledge about its affects on patients, and the sensitivity of such nature. Clinicians tend to focus on disease outcomes and lack the experience in handling these intimate issues, and hence, problems with intimacy and sexuality have been largely neglected.³

Breast cancer carers, have recognised that sexuality and intimacy in relationships are important aspects of healing.[3], [4] Papers reporting problems with intimacy following head and neck cancer are infrequent, which is surprising given the anatomical site and degree of disfigurement and loss of function that can occur following head and neck cancer. However, the issue of sexual dysfunction is recognised in three head and neck cancer health-related quality of life questionnaires. The European Organisation for Research and Treatment of Cancer Quality of Life questionnaire-Head and Neck 35 (EORTC H&N35) has two questions asking patients about their interest and enjoyment in sex. The Head and Neck Cancer Inventory (HNCI) has one question which asks about change in patients’ sexual activity caused by their illness.⁵ The Functional Assessment of Cancer Therapy-Head and Neck Scale Version 3 (FACT-H&N V3) asks about the closeness of patient to their partner and their sexual activity during the past year.⁶

There is growing awareness of the importance of health-related quality of life (HRQOL) and the merit of its inclusion as an outcome parameter for patients with head and neck cancer. Questionnaires in the past were often used for research rather than routine clinical practice.[7], [8] Simplicity is paramount because HRQOL is best measured longitudinally. The administration of questionnaires adds an additional burden to clinical resources.⁹ Despite their brevity, questionnaires can provide useful clinical information for multi-disciplinary support to target patients with specific needs.[10], [11], [12] Single questions have clinical meaning as shown by the addition of the mood and anxiety items to the University of Washington Head and Neck Questionnaire version 4 (UW-QOL v4).¹³ The aim of this study was to pilot an intimacy question based on the style of the UW-QOL v4 and to relate this to clinical characteristics, HRQOL (UWQOL) and the sexual questions of the EORTC H&N35. The intent was to gain a better understanding of the prevalence of intimacy and sexual problems and to identify common patient characteristics the can serve to predict which patients are likely to have dysfunction. The use of a simple less intrusive question on intimacy rather than sex might improve patients response rates to a sensitive issue. Also the term intimacy can help capture issues on closeness and physical contact that are precursors to an intimate relationship.

Section snippets

Patients and methods

Patients treated for primary squamous cell carcinoma of the head and neck, January 2000 to December 2006, were identified from the University Hospital Aintree Head and Neck Cancer database. Patients with cutaneous and salivary gland malignancy, patients treated with palliative intent, patients with recurrence and ongoing disease were excluded. Mortality status was tracked via the Office of National Statistics (ONS). In March 2007, postal questionnaires were sent to all patients known to be

Results

In March 2007, 654 patients of the 2000–2006 Head and Neck cancer cohort were alive and disease free. Of these 133 ENT patients from one particular surgeon were excluded at the outset, as information was unavailable from the Aintree Head and Neck Cancer database. Two patient addresses were untraceable and one patient was known to be unwilling to receive questionnaires. The overall response rate was 68% (350/518). There were no notable variations in the response of each clinical group (Table 1).

Discussion

Problems related to sexuality and intimacy in head and neck cancer patients have been identified in this study. A response rate of 68% is satisfactory for a postal survey given the highly sensitive nature of the survey. The number of questionnaire items were minimised to promote an adequate response, and therefore, full versions of the EORTC C30 and H&N35 were not used, nor were other head and neck questionnaires containing sexual items. About one-quarter (23% and 29%) of responders did not

Conflicts of Interest Statement

None declared.

Acknowledgements

We wish to thank Mr. Terry Jones, Mr. Nicholas Roland, Mr. James Brown and Mr. David Vaughan for allowing their patients to be included in the survey.

References (34)

S.N. Rogers et al.
A review of quality of life assessment in oral cancer
Int J Oral Maxillofac Surg
(1999)
S.N. Rogers et al.
Distinct patient groups in oral cancer? A prospective study of perceived health status following primary surgery
Oral Oncol
(2000)
S.N. Rogers et al.
The relationship between length of stay and health-related quality of life in patients treated by primary surgery for oral and oro-pharyngeal cancer
Int J Oral Maxillofac Surg
(2001)
J.W. Williams et al.
Case-finding for depression in primary care: a randomized trial
Am J Med
(1999)
U. Monga et al.
Sexuality in head and neck cancer patients
Arch Phys Med Rehabil
(1997)
L. Millsopp et al.
A feasibility study of computer-assisted health-related quality of life data collection in patients with oral and oropharyngeal cancer
Int J Oral Maxillofac Surg
(2006)
S.N. Rogers et al.
A structured review and theme analysis of papers published on ‘quality of life’ in head and neck Cancer: 2000–2005
Oral Oncol
(2007)
P.J. Allison et al.
Correlates of health-related quality of life in upper aerodigestive tract cancer patients
Qual Life Res
(1998)
J. Herranz et al.
Psychosocial adjustment after laryngeal cancer surgery
Ann Otol Rhinol Laryngol
(1999)
A.J. Hordern et al.
Communicating about patient sexuality and intimacy after cancer: mismatched expectations and unmet needs
Med J Aust
(2007)

A. Hordern

Intimacy and sexuality for the woman with breast cancer

Cancer Nurs

(2000)

G.F. Funk et al.

Comprehensive head and neck oncology health status assessment

Head Neck

(2003)

List MA, D’Antonio LL, Cella DF, Siston A, Mumby P, Haraf D, et al. The performance status scale for head and neck...

J. Ringash et al.

A structured review of quality of life instruments for head and neck cancer patients

Head Neck

(2001)

Weymuller EA, Yueh B, Deleyiannis FWB, Kuntz AL, Alsarraf R, Coltrera MD. Quality of life in head and neck cancer....

S.N. Rogers et al.

The University of Washington Head and Neck cancer measure as a predictor of outcome following primary surgery for oral cancer

Head Neck

(1999)

S.N. Rogers et al.

The addition of mood and anxiety domains to the University of Washington quality of life scale

Head Neck

(2002)

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Issues of intimacy and sexual dysfunction following major head and neck cancer treatment

Summary

Introduction

Section snippets

Patients and methods

Results

Discussion

Conflicts of Interest Statement

Acknowledgements

Int J Oral Maxillofac Surg

Oral Oncol

Int J Oral Maxillofac Surg

Am J Med

Arch Phys Med Rehabil

Int J Oral Maxillofac Surg

Oral Oncol

Correlates of health-related quality of life in upper aerodigestive tract cancer patients

Qual Life Res

Psychosocial adjustment after laryngeal cancer surgery

Ann Otol Rhinol Laryngol

Communicating about patient sexuality and intimacy after cancer: mismatched expectations and unmet needs

Med J Aust

Intimacy and sexuality for the woman with breast cancer

Cancer Nurs

Comprehensive head and neck oncology health status assessment

Head Neck

A structured review of quality of life instruments for head and neck cancer patients

Head Neck

The University of Washington Head and Neck cancer measure as a predictor of outcome following primary surgery for oral cancer

Head Neck

The addition of mood and anxiety domains to the University of Washington quality of life scale

Head Neck