Determinants for further wishes for cosmetic and reconstructive interventions in 1652 patients with surgical treated carcinomas of the oral cavity

Early on surgeons recognized the importance of psychological variables for coping with distortions in the head and neck area [1‐3]. However, the conditions for the implementation of the findings into rehabilitation were not given at that time [4]. Even more not only somatic but also psychological factors for patient satisfaction are important [5‐8].

In a multipart work, Kollbrunner determined psychological variables in 2001 [9, 10]. Apart from survival, quality of life (QOL) targeting on dealing with functional and aesthetic impairments became more important in the last 15 years. Nowadays, finally, fundamentals for interdisciplinary care of patients after head and neck surgery are acquired [11‐13].

In recent studies, quality of life is defined differently taking disease-specific variables into account (health-related quality of life (HRQL)).

The aim of this study was to define the experience of impairment by asking the patients and emphasizing on aspects of disfigurement and the desire for further cosmetic and reconstructive surgery [14]. Personality traits, psychosocial factors and coping strategies as well as the effects of support, coping and resilience [15] have been identified.

A particularly important coping strategy is the patient’s endeavour to regain an appearance as close as possible to the preoperative state. This is an illusion, well known to the maxillofacial surgeon but not to the patient. However, there is hope to increase the satisfaction in patients making compromises. Accordingly, the patient needs to be given informative support. Until now, this has hardly been taken up in literature. Few is known describing the importance of scarring and disfigurement of the patient and emphasizing on the importance of quality of life.

The consequence to require further cosmetic surgery has not been researched, even though it is meaningful to maxillofacial surgeons [16]. However, even more significant is the discrepancy between desires of patients to improve their situation and the offer made by the medical and psychological side.

Millsopp [16] discovered significant differences in the causes for further cosmetic and reconstructive surgical wishes in patients. While 114 (41%) of 278 patients hoped to improve their situation by CRS, only seven of the medical reports portrayed a dissatisfaction with postoperative appearance and only in two cases further CRS was described as necessary.

In this study, the relationships between the desire for cosmetic surgeries and its determinants are analysed (Fig. 1).

This should help to rehabilitate the patient after radical surgical removal of oral cancer, to improve the subjective satisfaction and hence the quality of life. Whether another operation makes sense can be determined based on the knowledge of medical data and the patients’ desires. A further aim of this study is to introduce the most significant data needed in the interview between doctor and patient, in order to plan further operations in maxillofacial surgery according to the patient’s needs.

In recent studies, an extended term of life quality (LQ) is being used, describing the connection between surgical techniques and health-related quality of life (HRQL) [17, 18]. Hence, insights on interactions between impairments reported by patients were collected. In addition, an attempt was made to explore the psychosocial conditions or consequences of those impairments [19‐26]. At times, no significant differences were found for general LQ, but often for HRQL [22‐24, 27, 28].

In this retrospective study, 3894 questionnaires were handed out to German-speaking patients by oncological wards in 43 participating hospitals in Germany, Austria and Switzerland. Of those 1761 returned anonymously in time [29], 1652 were evaluable. Nine chapters with 147 complex questions gathered demographic data, health behaviour, diagnosis and treatment prior and during the in-patient-stay. Furthermore, the development of the impairments caused by disease and therapy for at least 6 months after surgery was analysed. The questionnaire was developed by the Oral- and Maxillofacial Surgery and the Department for Medical Psychology of the Ruhr-University Bochum and tested for systematic and unsystematic mistakes (Thesis Grochowski & Hendler, 1993 unpublished). Thirty-eight of the 43 participating hospitals returned the questionnaires. Tumour size was specified in 1489 questionnaires. Answers to life quality were not answered in 149 cases. Furthermore, not all patients answered all questions which resulted in minor differences in sample size.

To measure the experienced impairment, a 5-step Likert scale was used (no impairment = 0, slight impairment = 1, moderate impairment = 2, severe impairment = 3, very severe impairment = 4). The result figures relate to the time before treatment (t1), immediately after (t2) and at least 6 months after surgery (t3). The quality of life was evaluated via a 100-ary scale (from 0 = not satisfied to 100 = completely satisfied). The psychological variables were measured by the following scales:

Statistical analysis uses differences calculated by SPSS 22. Occasionally, standard residuals (SR) are mentioned in parenthesis. If significant, differences between groups are emphasized by SRs of ≥2 in crosstabs relating to the subgroups. The calculation of significant differences was performed according to Kruskal-Wallis with a univariate ANOVA second to using the Komologov-Smirnoff test. Significances in correlations and cross tabulations were calculated according to Kendall’s tau b. In addition, linear stepwise regression was used. The results are indicated in boxes.

In 1565 of the 1652 evaluable questionnaires, the request on additional cosmetic and reconstructive surgeries was answered. Eighty-seven patients took no position (missing 5%). In 74% of the sample, there was no desire for another cosmetic surgery. Twelve percent of patients expressed a strong and very strong desire for further cosmetic surgery, and 14% of this desire was moderately or very pronounced (Table 1). Hence, 26% of patients would need a conversation on this topic.

One thousand five hundred eighty patients answered the question on the number of underwent cosmetic surgeries (missing 74, 4%). Ninety percent of the sample did not have any cosmetic surgery (N = 1417). One hundred twenty-five people (8%) were operated once cosmetically, 16 (1%) twice and 22 (2%) more than two times. Frequencies for localization are shown in Table 2.

An important role is played by the question for further CRS in terms of rehabilitation after radical surgery of oral cancer [13]. It is well known that the impairments, deficits and psychological variables are due to this fact. Relations in between those variables are nevertheless inadequately researched and practically implemented [34]. Most oral and maxillofacial surgeons know that most patients do not want to undergo further CRS. However, literature did not describe yet that this population can be as large as 74%. This is maintained among others by the tumour localisation which is contrary to the fact that 90% of our patients had no further CRS. After all, 26% had a strong wish for CRS. This might be explained by patients’ insecurity evaluating medical facts, which can be seen in terms of knowledge on relapse. Physicians diagnosed a relapse in 58 patients, but 272 patients believed to suffer relapse, and another 106 were unsure. A total of 80% were varyingly worried about relapse as Campbell emphasized [35]. Hence, there is an information gap, which could be closed by improving the physician-patient consultation.

No difference was shown between gender and wish for CRS in this survey. Family status on the contrary was important: widowed, divorced and separate as well as single patients mentioned a stronger wish for CRS than those bound to families. Older patients resigned more often than younger ones. Already discussed in literature patients with strong wishes for CRS stated a loss of income more often than those without wish for CRS [7, 36, 37]. The importance of this aspect is emphasized by the fact that loss of income got incorporated in the questionnaire by Rogers [38].

Concerning life quality (LQ), cicatrisation and facial distortion are of major importance, which is conveyed in our study and in literature [3, 8, 16, 35, 39]. Nevertheless, several examiners did not find a reduced life quality in comparison to normal population or other cancer types [40]. Which psychological mechanisms are due to this fact should be urgently resolved, since additional particularizing questions indicate the opposite [41].

Our survey on 19 impairments affirms the suspicion that questionnaires on life quality do not describe the full range of psychological conditions. All 19 impairments are highly correlated to life quality. They change during the period of time after surgery and not only in patients with oral cancer. Hence, appearance itself follows the typical exemplary course of impairments. Pre-operatively, there are no grievances; shortly after surgery, discomfort is at its highest level, and 6 months post-operative values are decreasing. This course of discomfort is often reported in literature for example by Markkanen-Leppänen [42].

Nowadays, oral and maxillofacial surgeons aim for the development and comparison of operational techniques and cosmetically aid to reduce the patients fear of defacement [8, 13, 16, 43‐48].

From a list of 19 impairments, each impairment differed significantly in its strength regarding the wish for CRS. As prospected, the most important impairments were appearance and mandibular mobility. Kamstra et al. and Devine et al. mentioned mandibular mobility as main factor [44, 49] as well as Hahn et al. [50]. Furthermore, cervical mobility, articulation of speech and mouth opening are meaningful.

Mobility of the tongue was important to our 410 patients wishing for CRS because of the control of food intake, also described by Toporcov and Antunes [51]. The same holds true for the possibility to open the mouth, described by Weber et al. [52]. Further, 15 impairments do differ between patients with and without wish for CRS, but with less significance (Table 9).

Medical data implements that the importance of surgery, radiation, dissection and reconstruction is meaningful in developing wishes for further CRS but inadequately researched. And yet they are important preconditions for optimal rehabilitation. There will be no sufficient, satisfying result if there is a great gap between patient’s expectations and medical possibilities [53]. Only an extensive survey among a high number of patients is able to describe the network in between each and every factor. One hundred twenty-five patients were operated once at time of survey. In total, 410 wished for further cosmetic operations. It can be assumed that many of those taking a medical point of view were in no condition for further successful surgery. This fact has to be discussed with the patient, so he/she can feel well treated and life quality remains stable [11, 54, 55].

Among psychosocial variables, the age of patients is important for the wish for CRS. Younger ones more often longed for CRS [56], and additionally, the chance of survival is higher as Goldenberg et al. confirmed in 2009 [57]. After pension, the need for CRS is decreasing, unless it is a premature pension due to the diagnosis of cancer. In this last named case, there was a very strong wish for CRS. Furthermore, patients without partner more often wished for CRS. Some literature describes the coherence of wish for CRS and impairments as, for example, nutrition. Liquid diet increases the wish for further CRS [58, 59]. Equally, pain and hypaesthesia are important for the wish for CRS. Both strongly influence the description of the emotional and functional situation by the patient, yet we were not able to prove a relation to the wish for CRS.

Nevertheless, there is a link to researches on cosmetic surgery in general and on orthognathic surgery. Those surveys show that questions on psychological problems are important for the satisfaction of patients with surgery all the same [5, 60‐63]. Hence, we assume that psychological factors play a similar role in patients who underwent surgical treatment of oral cancer. There is a high number of possible measuring tools [14]. The clarification is essential by evaluating the psychological situation of the patient and hence discussing and improving the outcome.

Depressive mood, depressive illness coping and problem analysis are related to further wishes for CRS and hence should be acknowledged by the physician and discussed with the patient. Also, future expectations and evaluation of life quality are of major importance [64‐69].

As early as 1980, Sela and Lowental noticed that cancer patients require more than a well-fitting prosthesis for successful rehabilitation [70]. This belief grew throughout the years, but is not yet always realized. Patient management is complicated and depends among others on the patients’ willingness to answer psychological questions [28, 71, 72]. If especially educated nurses or physicians conduct the conversation and psychology is not pronounced, patients may not have those problems. It is furthermore to be examined if patients do understand that their wishes may not be fulfilled all the time and a compromise is to be taken [73, 74]. The ability to get back to work without facial distortion belongs to this set of issues, equalling a signup of full rehabilitation.

The wish for CRS depends on diverse functional psychosocial and psychological parameters. Hence, it must be issued during conversation to improve rehabilitation. A decision on the medical treatment can be of greater satisfaction if the surgeon knows the patients’ needs and is able to compare them with the medical capabilities. The informed consent between doctor and patient regarding these findings is necessary.