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INTRODUCTION
The psychosocial impacts of visible esthetic differences on patients’ lives are determined by individual and social factors.(1) The difficulties more often referred to by these patients have to do with negative self-perception and social interactions.(1,2)
Depending on the type of impact, face deformities can lead individuals to a condition of temporary or permanent vulnerability. Rehabilitation through surgery or prosthesis is an important adaptation tool.(3) Bucco-maxillofacial prostheses can be divided into complementary instruments, such as scar coverups and restorative prostheses, and are subdivided into buccal (maxillary), facial (nasal), auricular, and oculo-palpebral.(4)
Facial prostheses are intended to help cosmetic repair, protect the affected area, and serve as an aid in psychological therapy.(3,5) The reason for this is that the rehabilitation process takes place in the social and psychological environments and depends on factors such as patient’s perception of treatment, access to prosthesis, the nature of the loss, and the person’s strategy to face the situation.(6)
Despite the esthetic benefits, facial prosthetic repair can cause problems related to identity, lack of self-confidence due to the prosthesis, or fear that the ‘truth’ will be uncovered.(2) Prostheses seem to produce emotional and behavioral changes; therefore, the instruments to evaluate rehabilitation should cover a variety of aspects.
The objective of the present study was to evaluate the quality of life and self-esteem of patients with deformities in the nasal, oculo-palpebral, and auricular areas using bucco-maxillofacial prostheses.
METHODS
This was a cross-sectional study in adult patients using nasal, oculo-palpebral, or auricular prostheses, who were rehabilitated at the dental clinic of the University Hospital of Brasilia.
The data collection instrument was an interview made for similar studies and adjusted to the objectives of this project:(7,10) the Rosenberg Self Esteem Scale, EPM Portuguese version, adapted and validated by Dini et al in the year 2000.(11) The SF-36 questionnaire was also used in its Portuguese version, based on the Medical Outcomes Study 36-Item Short Form Health Survey, translated and validated by Ciconelli et al in 1997.(12)
The interview was divided into two parts: the first part refers to specific data and contains 15 objective and subjective questions, including information about etiology, treatment access, types of performed treatment, type of prosthesis, aesthetic and functional satisfaction with prosthesis, information on social interaction and support, and an open question for free response by the interviewee. The second part deals with general information about patients, such as personal and socio-economic aspects.
The sampling was preceded by a review of the patients’ medical records since 2004, with a diagnosis of facial structures loss. Twenty-three clinical records were identified. The telephone numbers of patients were recorded, and various attempts were made to include them in the study.
This study complies with the recommendations for research with human subjects, adopted by Resolution 196/96 of the National Health Council, and was approved by the Brasilia Ethics Committee through Resolution No. 096/10. All patients signed an Informed Consent Form.
Data from the interviews were classified, combined with quantitative data and subjected to descriptive analysis.
RESULTS
The Bucco-Maxillofacial Prosthesis Service started operations in 2004, and by July 2011 had treated 97 patients. Of that total, 23 patients met the selection criteria set for this study: adult and adolescent patients using auricular (12 users), nasal (6) or oculo-palpebral (5) prostheses.
The final sample included five volunteer patients, corresponding to 21.7% of identified patients. Four patients were not found because their phone numbers were invalid; four were not using prosthesis; three were in the process of denture repair; three more were living in another state and were unable to attend data collection sessions; two were being treated for recurring cancer, and two were under 10 years old and therefore were not included in the study.
Patients were aged 41 to 74, with an average of 63.8 ± 13.59 years. All participants said they belonged to a religious group, either Catholic or Evangelical. The average family income was 3.5 minimum wages (minimum wage = US$200). Regarding occupation, four were retired, and one was a freelancer.
Table 1 shows the sample’s characteristics, and table 2 shows data on facial loss and prosthetic repair. Skin cancer was the prevalent etiologic factor (four patients), followed by microtia (one patient). All patients had at least one surgical procedure on the face (3.2 in average). Two participants have received radiotherapy. Most patients (four) received information on the possibility of losing some part of the face. The prosthesis was placed in periods of one to 37 years following the loss, with an average of 14 years. All patients reported that it was their doctor who told them about the possibility of using a prosthesis, and three patients said that they received that information during post-surgery. Three participants said their daily lives changed as a result of losing part of the face. All mentioned the way others view them and the prejudices they have faced due to their physical appearance.
Table 1 Characterization of the sample
| Patient | Sex | Age | Marital status | Religion | Education | Occupation | Income |
| 1 | F | 63 | Divorced | Evangelical | Primary complete | Retired | 1.5 |
| 2 | M | 74 | Married | Catholic | Secondary complete | Retired | 7 |
| 3 | M | 74 | Married | Evangelical | Primary incomplete | Retired | 1 |
| 4 | M | 41 | Married | Evangelical | Secondary incomplete | Freelancer | 7 |
| 5 | M | 67 | Married | Catholic | Primary incomplete | Retired | 1 |
Table 2 Data on loss of part of the face and prosthetic repair
| Patient | Etiology of loss | Number of surgeries | Age of loss | Prosthesis type | Time of prosthesis use (years) | Number of used prostheses |
| 1 | Skin cancer | 1 | 56 | Oculo-palpebral | 7 | 2 |
| 2 | Skin cancer | 7 | 62 | Nasal and auricular | 0.17 | 1 |
| 3 | Skin cancer | 4 | 54 | Nasal | 3 | 2 |
| 4 | Microtia | 2 | 0 | Auricular | 4 | 5 |
| 5 | Skin cancer | 2 | 52 | Nasal | 7 | 1 |
In terms of type of prosthesis, three participants were using nasal prosthesis, one was using oculo palpebral prosthesis, and one was using auricular prosthesis. Concerning retention type, three used dermatological adhesive, one used mechanical retention (glasses) and one used osseointegrated implant. The time of prosthesis use ranged from two months to seven years, with an average of 4.23 years and an average daily use of 11.2 hours. As for prosthesis hygiene, two users did not make any cleaning procedure, and one cleaned it inappropriately, using commercial ethanol.
The number of used prosthesis ranged from one to five, with 2.2 in average. Most participants (four) were rehabilitated at the University Hospital of Brasilia. Two patients reported difficulties with the prosthesis: one due to lack of retention of the nasal prosthesis, and another one due to the adhesive, low durability, high price, and the effect of prosthesis deterioration.
To identify facial loss visibility despite continuous prosthesis use, patients were asked to classify their deformity as very visible; all notice it; visible; some people notice it; not very visible; few people notice it; indifferent; no one notices it, and I don’t worry about it. Responses are varied, as two patients identify their deformity as highly visible, two as not very visible, and one reported not worrying about it.
Participants who think that their deformity is visible to some degree were asked if that affects their behavior, feelings, or the frequency in visiting public places. All participants said they feel uncomfortable when being observed and causing curiosity in others. For three participants, this fact interferes negatively with the frequency in visiting public places; two of them say they often feel shame and rage.
The study subjects lived at least with one person, four of them with their spouses. Three participants reported that they received support, mainly from family and friends, and two did not receive any support. None has had a psychological follow-up, and they think it is not necessary.
Social interaction was evaluated by means of five everyday situations: “I normally feel comfortable talking with others”, “I avoid asking questions”, “I avoid tasks that involve asking favors”, “I express my point of view”, and “I manage to stay calm when I hear jokes about me”, both in a group of strangers and in a group of known people (friends and relatives). The response options were: never or rarely; occasionally; frequently; very frequently, and always or almost always.
To the situation “I normally feel comfortable talking with others” in a group of strangers, two participants responded “always or almost always”, one said “occasionally”, one “frequently” and one “never or rarely”. Regarding the same situation in a group of known people, all participants responded “always or almost always”.
To the situation “I avoid asking questions” in a group of strangers, one participant said “never or rarely”, two said “frequently” and two “always or almost always”. In the group of known people, four participants responded “never or rarely” and one “frequently”.
To the situation “I avoid tasks that involve asking favors” in a group of strangers, three participants responded “always or almost always”, one “occasionally” and one “never or rarely”. In the group of known people, two participants responded “never or rarely”, two “always or almost always” and one “occasionally”.
To the situation “I express my point of view” in a group of strangers, three participants responded “always or almost always” and two “never or rarely”. In the group of known people, four participants responded “always or almost always” and one “frequently”.
To the situation “I manage to stay calm when I hear jokes about me”, the response of all participants in the two types of groups (unknown and known persons) was “always or almost always”.
Table 3 shows the results obtained with questionnaire SF-36, which is divided into eight components: physical aspects, pain, functional capacity, health status, vitality, social aspects, emotions, and mental health. The data are analyzed by transforming responses in a score from 0 to 100. The lowest average scores corresponded to “pain” and “emotional aspects”.
Table 3 Scores of the components evaluated by the SF-36 in facial prosthesis users
| Components | Media | Standard deviation | Minimum | Maximum |
| Functional capacity | 70 | 24.9 | 50 | 100 |
| Physical aspects | 66,67 | 28.5 | 25 | 100 |
| Pain | 46,67 | 37,52 | 0 | 100 |
| General health status | 60,67 | 36.34 | 5 | 100 |
| Vitality | 73,33 | 31.34 | 25 | 100 |
| Social aspects | 70,83 | 22.7 | 50 | 100 |
| Emotional aspects | 33.33 | 50.55 | 0 | 100 |
| Mental health | 62,67 | 29.17 | 20 | 92 |
The Rosenberg Self-Esteem Scale consists of ten questions, with scores ranging from 0 to 30. The higher the score, the lower the self-esteem of the person. The score obtained in this study had a variation of 3 to 7, with an average of 4.6 ± 1.52 and a median of 4.
DISCUSSION
Research on the role of psychosocial factors and quality of life in relation to diseases is becoming increasingly important. However, studies on the impact of the loss of a part of the face and facial prosthetic rehabilitation are scarce.(13,14,15,16) This makes our evaluation more important. The results show that these patients are often victims of prejudices and lack professional psychological help.
The studies found during this project have limitations due to the small size of the samples and to the diverse conditions leading to the use of facial prostheses. The data of five patients could not be found due in part to the lack of mechanisms to update clinical history data and because many patients do not have landline telephone service but just cell phones or work phone numbers, which tend to change very frequently. The number of participants was also a problem.
The literature reports a higher prevalence of facial prostheses among male patients over the age of 45,(17) which is consistent with our results, that showed a high prevalence in this same population-both in the final sample (four) and the identified clinical histories (69.6%)-. The predominant age range was > 50 years.
Facial mutilations have multiple causes, but the most frequent are diseases and accidents.17 In this study’s sample, cancer was the prevalent etiologic factor (four cases). The analysis of the identified clinical histories showed that etiology varies according to anatomical region. Congenital and traumatic causes are predominant in the auricular area. Skin cancer is predominant in the nasal area, while all patients with oculo-palpebral prosthesis had some type of malignant neoplasia.
In all cases, prosthetic repair was delayed, with the prosthesis being installed in 14 years in average. This is due to the successive attempts for aesthetic restoration through surgeries, restoration treatments for cancer and the few specialized centers available for treatment of facial mutilations.
Of all the patients identified with auricular prosthesis, five could be contacted but only one participated in the study. This is due largely to the patients themselves, since they were not using the prosthesis. Manufacturing partial auricular prostheses is a complex task, and their adhesives are hard to apply, leading to prosthesis retention problems and adherence difficulties for patients.(18)
The only participant with auricular prosthesis retains his prosthesis using osseointegrated implants. This is considered the best treatment option, as it provides a correct positioning of the prosthesis and excellent retention.(8,19,20)
Users of adhesive-retained prostheses would like to get rid of the adhesives because they find them uncomfortable and irritating on the skin. In addition, the accumulation of adhesive on the prosthesis edges contributes to discoloration and marginal deterioration.(20) In this study, two patients reported difficulties with the prosthesis: one due to the lack of retention of the nasal prosthesis, and another one due to the adhesive, low durability, high cost and the effect of prosthesis deterioration. Previous studies have shown that using retention systems with magnets is an appropriate method to retain this type of prosthesis.(21)
Regarding hygiene, two users did not perform any cleaning procedures, and one cleaned his prosthesis inappropriately, using commercial ethanol. The analysis of these responses emphasizes the importance of establishing communication between health professionals and users because proper hygiene of both face and prosthesis can prevent the accumulation of adhesive remains, and thus reduce skin irritation and increase the useful life of prostheses.
Four participants in this study think that their deformity is visible to some degree, even though they use the facial prosthesis. The consulted literature points out that the subjective perception on deformity visibility seems to be the best predictor of psychological problems related to body image, and that the extension, type, and severity of the deformity do not determine the patients’ capacity to adjust to it.(2) Therefore, large lesions on the face produce additional stress, since they are more visible in social situations, compared with other areas of the body.
People with visible differences are largely responsible for problems in social interaction. Many seem to believe that their presence is not welcome in social situations, and therefore have negative reactions to other people, behaving defensively, and even becoming aggressive or shy. This behavior pattern tends to produce negative responses by others, which reinforces the initial idea of the disfigured person, creating a vicious circle.(2)
Some studies demonstrate that the support for people with some sort of facial deformity is mainly offered by relatives and the spouse or partner.(1) Social support seems to be effective to address patients’ needs and should be considered by health professionals in the rehabilitation plan.(22) Social support is often described as an important positive effect on the psychological adaptation to a deficiency, and therefore the intervention strategies should also integrate families.(23) The assessments of rehabilitation programs highlight the importance of the care offered by relatives as one of the resources to either facilitate or hinder the process of patient’s social integration or reintegration.
The analysis of social interactions included an assessment on the frequency with which the participants reacted in five situations in two different groups: unknown and known people. Participants say that they interact most effectively in environments with known people. The most evident differences were identified in these two situations: “I normally feel comfortable talking with others” and “I avoid asking questions”. There seems to be a good capacity to deal with adverse situations, like jokes.
It has been suggested that the quality of life of orbital and nasal prostheses users is limited compared to patients with defects in the auricular area.(24) In the present study, the only patient using auricular prostheses scored the highest in all domains of the SF-36 questionnaire. It should be noted, however, that this was the only patient whose etiological factor for the loss was not cancer but a congenital cause.
Cancer patients undergo treatments such as surgery, radiotherapy, chemotherapy or a combination of these strategies. In the present study, two participants were treated with radiotherapy. Each type of treatment can produce diverse negative consequences, such as mastication, swallowing and speech problems.(20)
It should also be noted that in the case involving a congenital cause the presence of the deformity exists since birth. These patients have more opportunities to incorporate “normalcy” to their body image and get used to the reaction of others, acquiring effective strategies to deal with these situations. However, the subject’s relationship with body image is the most complex variable, as certain congenital conditions become progressively more severe throughout life.(2)
Those who develop facial deformities in adulthood must adapt themselves to new circumstances, like losing their previous appearance and facing the consequent change in body image. In addition, among those who develop facial deformities later in life, cancer patients must deal with the fear of dying. This factor can interfere with the perception of facial deformity by patient and family alike.(25)
To meet the functional and aesthetic goals, prosthetic rehabilitation relies on attachment, retention, and stability of the prosthesis.(26) Patients with implant-retained prostheses in the auricular and orbital region usually have a higher quality of life, compared with those who use adhesive retained prostheses.(27)
Besides providing better retention and stability, the treatment with osseo-retained craniofacial implants allows the use of lighter prosthesis with defined edges, resulting in additional functional, psychological and social improvement because of the recovery of self-confidence, acceptance, aesthetics, and prosthesis function, favoring well being and quality of life.(19)
Rehabilitation with implants depends on variables thatmayaffect itsindicationandtreatmentoutcomes, like the method of radiotherapy treatment, radiation dose, bone quality and location, the interval between placement of the implant and prosthetic connection, the type of implant, and patient’s overall health status. Despite the excellent benefits of osseointegrated implants, their high cost becomes a problem, especially for the low-income population, which generally demands this type of rehabilitation.(19)
Studies using the SF-36 questionnaire in maxillofacial prosthesis users could not be found during this project. When the scores of the SF-36 components in our sample are compared with retired patients, five components show better results, and the ones with the lowest scores are pain, emotions, and mental health.(28)
The psychometric properties of the Rosenberg Self-esteem/EPM Scale help detect small changes in self-esteem; in addition, this scale is short and easy to understand.(11,29) Studies using this instrument in facial prosthesis users could not be found either. The EPM version of this instrument was previously used for a study(25) in patients diagnosed with skin carcinoma on face and neck with a mean age range of 57.9 years, obtaining an average score of 6.8 and a median of 7.0 -higher values than the ones in the present study-. The scores in this study had a variation of 3 to 7, with a mean of 4.6 ± 1.52 and a median of 4. Both studies report low self-esteem levels. Patients diagnosed with cancer must deal with the uncertainties of this disease and its association with fatality, which can cause anxiety and affect self-esteem. Evaluating self-esteem involves resilience-or the individual’s ability to overcome adversity and get stronger.(30)
Despite the aesthetic improvements, all participants reported that they feel uncomfortable when others are observing them or feeling curious about their deformity. In addition, three patients referred to the way people view them and to prejudices as a modifying factor in their daily lives. Aesthetic concealment is difficult and complex; for instance, a well-adapted oculo-palpebral prosthesis does not bring eye and eyelid movement back.(20) In the case of nasal prosthesis, it is hard to choose a suitable material in terms of color, shape, and retention means.(21,31)
Dealing with an adverse condition represents the possibility of expanding adaptive resources that promote positive perceptions in the presence of situations that could have been worse, like death. Most patients in the present study had skin cancers in the face and neck, a condition that can result in significant morbidity due to the functional and cosmetic value of these areas.(29) These results highlight the importance of considering the health-disease process over time and using compensatory resources for the adaptation to an adverse condition.
Most surveyed facial prostheses users showed positive results in most of the components of quality of life. The fact that four participants were cancer survivors may have contributed to a more positive assessment of the current health status and quality of life, as the SF-36 questionnaire shows.
This study and the consulted literature highlight the need of additional research to establish multiprofessional rehabilitation programs, because prosthetic rehabilitation by itself is not enough to cope with all the implications of the absence of a body part. The rehabilitator should identify patients in need of specific support. Families should be included in the provision of health care, since they are a major source of support for patients.
Facial prosthesis treatment is the first step towards the recovery of the well-being and quality of life of patients with facial deformities. The improvements in self-esteem may be the result of the aesthetic function of prostheses. The results of the present study open doors for a more comprehensive assessment of these patients. Multi-professional studies can better characterize this population and offer a concomitant interdisciplinary support to the rehabilitation treatment, in harmony with a comprehensive care model.
