Quality of life in patients with facial prosthesis

Head and neck cancer has an enormous impact on the quality of life of patients
(1). Radiation and chemotherapy in combination with surgery is the treatment
generally used for malignant tumours of the head and neck region (2). The
adverse effects of these treatments may result, besides dysfunction, in a
significant facial disfigurement. This can cause self image difficulties for
the patient, possibly evolving into psychosocial dysfunction (3). Therefore
aesthetic repairs of head and neck lesions may be just as important to the
patient as the treatment itself. In some patients, reconstructive surgery is
possible to reconstruct facial defects. However, although multiple procedures
are often needed, the results of surgical reconstruction of extensive facial
defects are often disappointing (4). As a result most aural-, nasal- and ocular
defects are reconstructed by a prosthesis. Prostheses provide better results
than reconstructive surgery when restoring large facial defects (5). Using
silicone and plastic resin, an inconspicuous restoration of the facial defect
can be achieved in many patients. In the past, the facial prostheses were
supported by a surgically constructed skin tunnel or attached to spectacles
(4). These methods had many drawbacks, e.g. difficulties with the positioning
and retaining the prosthesis. Nowadays the facial prostheses are attached by
special glue or extra oral implants with realistic results (6). The cosmetic
result is an important outcome measure of the procedure and even more important
is the patient*s satisfaction with the results (7).

Limited research has been conducted assessing the consequences in quality of
life of patients with facial prostheses. Irish et al. (8) determined the
quality of life after prosthetic rehabilitation for maxilla and palatal
defects. They concluded that the prosthesis improves the obturator function
that leads to a better quality of life. In general prosthesis for aural, nasal
and ocular reconstruction do hardly improve the functional loss. The article of
Chang et al. (9) evaluated the patient*s satisfaction with adhesive-retained
prostheses versus implant-retained facial prostheses studying patients with an
auricular, nasal or orbital prosthesis. They concluded that the
implant-retained facial prosthesis offers significant advantages over the
adhesive-retained prosthesis. According to this article this is due to the ease
of use and secure retention of the prosthesis during the day. Though Younis et
al. (10) who examines the Branemark-type, bone-anchored, ear prosthesis shows
that patients fitted with this type of implant are pleased with the aesthetic
appearance but experience skin and implant related problems affecting their
satisfaction. Besides Dos Santos et al. (11) describes that the satisfaction of
auricular prosthesis depends on the colour stability of the resin and silicone.

Compared to the studies investigating psychosocial consequences in patients
with a facial prosthesis, more research has been done evaluating the contention
on aesthetic surgery and the impact and anticipation after surgery of head and
neck cancer (7, 12). Mary Jo Dropkin is a prominent researcher in this field.
She evaluated the various aspects of the quality of life and body image after
head and neck cancer surgery. In her early articles she constructed a
quantitative scale to measure the perception of severity of visible
disfigurement and explored the coping with this disfigurement and dysfunction
after head and neck cancer surgery (13, 14). In 1999 her study indicates a
correlation between body image reintegration and the subsequent quality of life
in these patients (15).

To evaluate the general well-being of an individual or a group, the term
*Quality of Life* is generally used. Definitions of this term are as numerous
and diverse as the methods of assessing it (16). The various quality of life
questionnaires and additional specific questionnaires show that there are also
many different ways to investigate the quality of life in head and neck
patients (1, 17, 18). Since the evaluation of one*s bodily appearance and
function are commonly considered as crucial for the way one evaluates one*s
quality of life, body image-, body satisfaction-, or disfigurement /
dysfunction scales are frequently added to the quality of life questionnaires
(3, 19-21). To answer the question which composition to use for our group Ching
et al. (7) assessed in a review of literature how to measure the outcomes of
aesthetic surgery. They have concluded that the Body Image and Quality of Life
measure are most valuable determining aesthetic surgery outcomes.

In a small pilot study we assessed the feasibility of giving these
questionnaires to 5 patients who visited the anaplastologists. Questionnaires
were filled in by all of them within one hour. After filling in the
questionnaire the patients answered 10 feedback questions to evaluate our
questionnaire.

In our hospital a group of 135 patients consult the anaplastologists for
construction and maintenance of their facial (aural-, nasal- or ocular-)
prosthesis. Most of these patients have to cope with their facial deformity and
find ways to accept their handicaps. Initially almost all of these patients
have psychological problems after the ablative head and neck surgery (1,3). As
time passes, these problems will (partly) subside. However, it is well known
that some patients cope better with their handicaps than other patients.
Decision making on treatment should be done in dialogue with the patient and
although the alternative are generally limited, it would be helpful for both
the clinician and the patient if realistic predictions can be made on both the
mutilation as well as the expected coping problems.

The purpose of our study is to describe the quality of life of patients who had
facial surgery and who are using a facial prosthesis (for at least 1-10 years),
with a specific emphasis on bodily experiences (concerning both function and
appearance). This current study wants to provide further insight into the
social-, psychical- and physical- situation and the possible limitations of
these patients with a facial prosthesis. With this knowledge we hope to notice
the possible problems in this patients group and anticipate if necessary. By
using in-depth interviews in 10-15 purposively selected patients (different
prostheses, age, sex etc.) we will identify specific problems and possible
solutions for these patients. Furthermore we hope to find clues on whether we
can predict the satisfaction, coping and QOL.

This study will be carried out as a cross sectional study. In this hospital 135
patients consult the anaplastologists on a frequent (> once a year) basis for
maintenance of their facial prosthesis. These 135 eligible patients will be
asked to participate in the study and sign the informed consent form.

The participating patients will be divided in a study group (inclusion
criteria) and a rest group (non-cancer patients, reconstruction occurred >10
years ago). The patients in rest group (approximately 40 patients) also visit
the anaplastologist on a frequent base. The study patients will answer the
complete questionnaire. This complete questionnaire includes a Quality of
Life-, facial prosthesis-, Body Image- and Survival of Cancer questionnaire.
From this group approximately 10 to 15 patients will be selected and will be
invited for an in-depth interview. The rest group will be asked to fill in the
QOL-, Body Image and facial prosthesis questionnaire.

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