Inge Veldhuizen

Globally, nonmelanoma skin cancer (NMSC) is the most common type of cancer in fair-skinned Caucasians, with incidence rates rising every year. Since most NMSC is located in the head and neck area and surgical treatment is the treatment of choice, many authors have researched various reconstructive methods for surgical facial defects. This thesis aims to further improve these reconstructive methods by incorporating patient satisfaction and psychosocial distress before and after surgery while using patient-reported outcome measures (PROMs). With this information, an increase in health-related quality of life (HR-QoL) can be achieved. This thesis can also be used to counsel patients regarding preventative measurements, complications and alter their expectations. This chapter summarizes and discusses all individual articles, with specific attention to “prevention and targeted counseling” and “peri-operative care.”

Prevention and targeted counseling

In chapter 2, a new checklist of the FACE-Q Skin Cancer Module has been described: the sun protection behavior checklist. As already known, ultraviolet radiation (UVR) is a major risk factor for skin cancer development. Therefore, after a skin cancer diagnosis, it is crucial to advise patients to change their sun protection behavior. Patients tend to change their sun-protection habits after a skin cancer diagnosis, but some return to their pre-diagnoses sun-protective habits after a period of time. This may be due to low levels of perceived risk, lack of knowledge, or inconvenience. Due to the importance of sun protection for preventing recurrence of skin cancer, the authors felt the inclusion of a sun protection behavior questionnaire in the FACE-Q Skin Cancer Module was especially relevant for this population.

In contrast to rating scales, each item in this checklist represents a clinically important issue. Therefore, the checklist is not converted into a Rasch score, and all items are discussed separately. This checklist aims not to counsel patients with the nuances of UVR index or sunscreen volume but to see if patients are aware of the need and importance of sun-protective behavior. Therefore, questions are short and straightforward without specific patient recall. The checklist exists of 5 questions with 4 answer options. After development, the checklist was completed by 531 patients prior to their facial skin cancer surgery.

From the 531 patients, most patients reported using sun protection behavior “often” to the items. However, 3-11% of responses reported “never,” notably with wearing a hat and protective clothing. Women were more likely to use sunscreen and avoid the sun, as seen in prior studies. Women were also less likely to wear a hat. These findings may reflect each genders’ expectations of appearance and societal pressures and indicate different areas for improvement in both genders.

In addition, patients with a prior history of skin cancer were significantly more likely to practice sun protection behaviors than patients without this prior history. Engagement in these behaviors increased with the number of skin cancers. As seen in this study, skin cancer patients, depending on demographic and clinical variables, have different degrees of sun protection behavior practices. Although not many patients report using sun protection behavior “never,” an improvement in sun protection behavior is possible. The FACE-Q Skin Cancer – Sun Protection Behavior checklist provides the physician with a clinically relevant and simple tool to help clinicians identify areas of improvement to better target educational efforts on an individual and a population base.

The previous chapter introduces the sun protection behavior checklist and describes its use in clinic prior to surgery. Since patients have an increased risk of developing new skin cancers and UVR exposure to a developing scar can cause delayed wound healing and hyperpigmentation, it is also crucial to change sun protection behavior post-surgery. In chapter 3, patients’ sun protection behavior was assessed prior to, three-months and one-year post-surgery. A total of 125 patients completed the checklist before and three-months after and 89 (71.2%) completed the checklist one-year after surgery. This study showed that sun protection behavior significantly increased over time, especially within the first three months post-surgery. However, further improvement is possible. Specific patient demographics showed a greater increase in sun protection behavior in patients with a history of prior facial skin cancer compared to no history. A reason could be that patients who have a history of facial skin cancer are more aware of their wound healing and risk of having new skin cancers in the future. In contrast, patients who had a defect on the ear or scalp showed decreased sun protection behavior three months post-surgery. Since these patients can not see their scars in the mirror, they may be less reminded of their post-surgical scars. Therefore, they are less aware of their prior skin cancer and forget the use of sun protection. Although patients increasingly use sun protection measures, counseling is still necessary to increase awareness of sun protection behavior and lower the risk of developing new skin cancers in the future.

In the previous chapter, the importance of counseling patients on sun protection behavior is emphasized. However, it is also essential to take into account that some patients will experience increased psychosocial distress after a skin cancer diagnosis. From the moment of diagnosis, patients will have some cancer-related worry. In addition, surgery-induced scarring will be a constant physical reminder of the skin cancer, resulting in an increased level of worry about their NMSC and risk of new skin cancers. In chapter 4, cancer worry in patients before and after Mohs micrographic surgery (MMS) treatment for facial NMSC is analyzed with the use of the FACE-Q Skin Cancer – Cancer Worry scale. A total of 151 patients completed the scale before and three months after their MMS. Of these, 99 (65.6%) also completed the one-year post-surgery questionnaire.

Most patients (92.7%) experienced some degree of cancer worry before surgery. These worries decreased over time. However, a lot of patients still experience levels of cancer worry after treatment. Patients without a history of prior facial NMSC showed a larger decrease in cancer worry post-surgery compared to patients with a history of NMSC. In addition, patients who did not undergo any facial surgery prior to treatment demonstrated a larger decrease in cancer worry than patients who did undergo a facial surgery procedure. Informing patients about the five-year recurrence rates and the importance of regular skin examinations and sun protection behavior might reduce some of their worries. Also, counseling and guiding patients in helping them go through the process of adapting to their facial alterations may help patients cope with visible scarring post-surgery. Although it is important to reduce certain cancer worries, some levels of cancer worry might be beneficial to motivate patients to change their sun protection behavior. This study’s outcomes could offer physicians a better understanding of cancer worry before and after treatment of MMS for NMSC. Physicians can use the FACE-Q Skin Cancer – Cancer Worry scale to identify patients with higher levels of cancer worry in need of more supportive care.

While the previous chapter describes the psychosocial implication of cancer worry and its importance in the skin cancer population, recently, patients experience a new problem; COVID-19 worry. January 20, 2020, the United States reported its first case of COVID-19. By the end of March 2020, hospitals were urged to delay elective and nonurgent surgeries, resulting in a delay in the treatment of NMSC. In chapter 5, the impact of the COVID-19 pandemic on patient perception of their skin cancer and surgical outcomes of MMS for NMSC was evaluated during the COVID-19 pandemic compared to one year prior to the pandemic. Patients were included in the two cities most heavily hit by the first wave of the COVID-19 pandemic, Boston and New York City. A total of 143 patients completed the FACE-Q Skin Cancer - Cancer Worry scale and COVID-19 specific questions during the first wave of the COVID-19 pandemic. The control group consists of 381 patients who completed the scale during the same time period in 2019. Patients during the COVID-19 pandemic had a significant treatment delay compared to patients before the COVID-19 pandemic. Yet, no difference was observed in pre-operative tumor diameter, post-operative defect size, or reconstruction type. However, a quarter of the patients in the COVID-19 group were more worried about their skin cancer than COVID-19. Although many hospitals are trying to provide ambulatory services while managing COVID-19 surges, delays in MMS may still occur. This study shows the low impact of a delay in NMSC treatment which could help patients cope with their worry during the ongoing COVID-19 pandemic.

Peri-operative care

Previously the importance of prevention and targeted counseling are discussed. However, by changing intra-operative care, an increase in HR-QoL can also be established. When patients’ appearance is altered (e.g., by post-surgical scars), patients might experience anxiety, depression, and avoidance of social situations. MMS can minimize the surgical defect compared to wide local excision; however, there is a chance that multiple resections are required before free margins are achieved. Therefore, both the physician and the patient can not predict the surgical defect diameter and consequently the post-surgical scar. In a recent study, an unrealistic expectation of the patient regarding scar length was seen. This might result in lower satisfaction and higher psychosocial distress. In chapter 6, short- and long-term satisfaction was evaluated using the FACE-Q Skin Cancer Module in patients who looked at their post-surgical defect in the mirror prior to reconstruction compared to patients who did not. A total of 113 patients completed the scales prior to surgery, and 108 (95.6%) completed the one-week, 113 (100%) the three-months, and 93 (82.3%) the one-year post-operative survey. Sixty-eight patients (60.2%) looked in the mirror, 45 patients (36.8%) did not look in the mirror. Although all female patients were less satisfied with the reconstruction, similar to previous research, females were significantly impacted by looking in the mirror. Higher patient satisfaction was observed when females viewed their facial skin cancer defect in the mirror prior to the reconstruction. Since female patients experience greater difficulty adapting to their facial skin cancer and value facial aesthetics more than male patients, looking at their defect might enhance their acceptance of their post-surgical scar. In addition, patients before flap reconstruction benefitted from looking at their defect, with lower appearance-related distress observed after looking in the mirror. A reason could be that flap reconstructions can result in multiple, complex scars while patients expect a linear scar. Also, flap reconstructions often require greater tissue movement, which could result in swelling and bruising. When a patient looks at the defect, the patient could understand that a simple reconstruction might not be possible and restoration of their facial contour may require a larger surgical intervention with more extensive scarring.

While the previous chapter showed the importance of involving the patient in the peri-operative care, involving the patient in the reconstructive method could also contribute to higher satisfaction. In chapter 7, a national survey study was conducted. Plastic surgeons received a picture of a patient who underwent MMS for NMSC. Participants were asked to report their first-choice treatment method for this specific defect. In addition, the patient from the picture was asked to complete the FACE-Q Skin Cancer Module before, one-week, three-months, and one-year post-reconstruction. A total of 132 members of the Dutch society of plastic surgery (Nederlandse Vereniging voor Plastische Chirurgie – NVPC) completed the survey (29.1%). An extensive range of different reconstructive options was reported. Most physicians chose a flap (97.0%), with a total of 9 different flap options. However, the patient was reconstructed with a primary closure and showed high satisfaction rates post-surgery. A simple reconstruction can often yield the best overall outcome. By taking into account the patient’s expectations and discussing the various possible reconstructions, optimal patient satisfaction can be achieved. As this is a single-case survey study, not all patients are suitable for a simple reconstruction. However, this study showed that there are many different reconstructive options for one specific defect. This offers the possibility to involve the patient in the decision-making process in order to improve patient satisfaction.

While simple reconstructions are sometimes favored, the nose often requires more complex reconstructions. With its unique framework of cartilage and bone, symmetry, and limited skin laxity, deformities can easily distort nasal contour and sometimes reduce airflow. Therefore, a lot of previous authors have described different reconstructive options after acquired nasal deformities. However, no systematic review examining nasal skin reconstructions exists. In chapter 8, a systematic review of the literature on reconstructions of acquired nasal deformities was conducted. The most commonly used flap reconstructions were analyzed, and complications and patient outcomes were assessed. A total of 176 articles (11,370 patients, 11,442 nose reconstructions) were included. This review showed that most of the acquired nasal deformities are a result of nasal skin cancer resection. Also, many options can be considered for nasal skin reconstructions. However, although many reconstructive options exist, this review clearly shows the limitation in the literature, with almost no articles reporting patient satisfaction with the reconstruction.

Therefore, in chapter 9, long-term patient satisfaction was evaluated in patients following nasal skin reconstruction. A total of 128 patients from Memorial Sloan Kettering Cancer Center, New York and Catharina Hospital, Eindhoven completed the pre-operative and one-year post-operative FACE-Q Skin Cancer scales. Patients were reconstructed using a primary closure (n = 35, 27.3%), single-stage flap reconstruction (n = 71, 55.5%), or full-thickness skin graft (FTSG) (n = 22, 17.2%). Patients who underwent a primary closure were the least satisfied with their post-operative scar. This study also showed lower scar satisfaction of patients undergoing lower nose reconstructions (nasal ala, alar rim, and tip) compared to upper nose reconstructions (nasal bridge, dorsum, and sidewall). With the lower nose being more central on the face and having a more complex contour with smaller subunits compared to the upper nose, reconstructions can easily distort the nasal contour. Distortion of nasal contour can consequently result in lower scar satisfaction. Female patients also showed overall lower long-term post-surgical scar satisfaction compared to males, as seen in previous studies. In conclusion, although surgeons learn to reconstruct a surgical defect by following the reconstructive ladder, starting with a simple reconstruction (primary closure) to a more complex reconstruction (i.g., flaps or FTSG), this study suggests to rethink this ladder and consider a flap over a primary closure to optimize function and aesthetic satisfaction.

While the previous chapter showed the difficulties of nasal skin reconstructions, a new reconstructive method for nasal skin reconstructions is introduced in chapter 10. Although flap reconstructions show high patient satisfaction, sometimes flaps are less favored due to prior scars, poor skin quality, or patients with multiple skin cancers. Graft reconstructions can then be performed. Besides the traditional skin graft, skin substitutes are increasingly used in reconstructive surgery. Integra dermal regeneration template (Integra; Integra LifeSciences, Plainsboro, N.J.) is a skin substitute that is recently used as a single-stage method for nasal defect reconstruction. However, this technique is not yet compared to the traditional FTSG and patient satisfaction is not yet assessed. In this study, a total of 90 patients that received either Integra or FTSG after nasal skin cancer resection were included (Integra n=45 vs. FTSG n=45). Twenty-one patients from each group (46.7%) completed the FACE-Q Skin Cancer scales. No significant difference between Integra and FTSG in patient satisfaction was observed. However, Integra patients reported more, mostly mild, symptoms like itchiness, sensitivity, tingling, numbness, and discomfort. This suggests Integra to be a satisfactory option for some nasal skin defect reconstructions.

Limitations

The studies of this thesis have limitations. In general, the limitations of the study are related to the nature of the study design. Chapters 2 and 10 had a cross-sectional nature, whereas chapters 3, 4, and 6 had a prospective nature but were single-center studies. Chapters 5 and 9 captured data from two centers but were limited by the time-points used. Chapter 5 captures patients’ cancer worry at one time-point pre-operative and chapter 9 captures patients’ scar satisfaction at one pre-operative and only one post-operative time-point. Chapter 7 was limited by the single case used. Besides the nature of the study design, patient satisfaction is inherently difficult to measure. As patient satisfaction can be influenced by individual experience and expectations, measuring patient satisfaction on a fixed scale can be challenging. PROMs are specifically designed to quantify patients’ experience and satisfaction. However, open-ended questions could gather more information for reasons why patients chose an answer on the Likert-type scale. In addition, not all patients who were invited to the studies participated; it is possible that those who did not complete the scales and checklists were less compliant or satisfied.

Future perspectives

The first part of the thesis (chapters 2-5) focuses on improving patient counseling to prevent new skin cancers, optimize patients’ expectations and lower their cancer worry. These chapters show that improvement in primary and secondary prevention is needed. There have already been considerable improvements in targeted counseling for patients with other diseases (e.g., breast cancer), with patient-tailored advice and personal recommendations, sometimes even before consulting with the surgeon (e.g., mammacare). In addition, multimedia is often used to give advice and create awareness. The results of the studies in this thesis show that more multimedia attention regarding primary prevention and more tailored care for patients with skin cancer can lead to a lower incidence and better quality of care.

As for chapters 6-10, the importance of involving the patient in the decision-making process is demonstrated. By considering the location, defect size, patients’ age, gender, and preferences regarding the scar and operation, a well-considered decision regarding the reconstruction can be made. More PROM data from patients after skin cancer resection and reconstruction could help physicians and patients choose the best reconstructive option for specific defects. Our research group is currently conducting a study investigating this in a multicenter setting. I am looking forward to the future of HR-QoL in facial skin cancer patients.