Development of an oral health related quality of life module: a presentation of phase I of three in the EORTC module development process


Session type:

Marianne Jensen Hjermstad1, Sheila Fisher2, Ourania Nicolatou-Galitis3, Joachim Weis4, Sebastian Montel5, Irma Verdonck6, Bente Herlofson7, Kristin Bjordal8, Petter Wilberg7

1Oslo University Hospital, Trondheim, Norway, 2University of Leeds, UK, 3University of Athens, Greece, 4University of Freiburg, Germany, 5Institut Curie, Paris, France, 6VU University Medical Centre, Amsterdam, Netherlands, 7University of Oslo, Norway, 8Oslo University Hospital, Norway


As the incidence of cancer steadily increases a substantial number of people live with the disease and/or the consequences of therapy. They require systematic and professional follow-up care with adequate symptom control, quality of life (QoL) and self-reported health assessment as central issues. Cancer treatment frequently leads to oral morbidity, e.g. mucositis, mucosal infections, oral pain, dry mouth (xerostomia), tooth decay and soreness which alone or together have a negative impact on their nutritional status, QoL and social function. Oral problems receive little attention in clinical medicine, leading to underreporting by patients and the risk of inadequate management by physicians. Proper assessment of oral problems should be conducted regularly before, during and after cancer treatment. However, there is no brief, well-suited instrument for assessment of cancer related oral health/mouth problems, for use in clinical care.

To develop an oral health QoL questionnaire supplemental to the EORTC QLQ-C30. This module is primarily targeted for cancer patients in curative or adjuvant settings diagnosed with cancers outside the Head &Neck region.

The EORTC QOL Group guidelines for module development are being followed. This is a 4-step process. Phase 1 involves generation of a list of potential items by a systematic literature search, refinement through interviews with health professionals /specialists and patients. This followed by questionnaire evaluation by patients and health professionals to ensure sufficient validity and reliability.

A list of 86 issues was compiled from the literature in the following categories: Pain/discomfort, Tooth status/Oral hygiene, Oral functional status, Information, Social function (body image / appearance). This item list was presented to 18 health care professionals; 8 oncologists, 4 oncology nurses, 5 oral surgeons/dentists, one dental hygienist from Norway (10), UK (4) and Greece (4). Two items were deleted, and the list of 84 items were subject to interviews with 133 patients (Greece 30, Norway 30, France 27, Netherlands 22, UK 15, Germany 9), M/F: (42%/58%), median age: 62 (22-90). 57% were in active treatment, 20% 2-6 months beyond treatment, 23% >6 months beyond treatment. Breast cancer was most prevalent (32%), the majority (70%) had received multimodal therapy. Analyses for item reduction are ongoing. Phase II (translations/question formatting) starts in August 2009, prior to Phase 3; testing of the module for acceptability and relevance in a wider patient population through completion of the questionnaire and interview.