Patient-reported outcome measures for facial skin cancer: a systematic review and evaluation of the quality of their measurement properties.

BACKGROUND: Skin cancer is the commonest malignancy worldwide, often occurring on the face. Both the condition and treatment can lead to scarring and facial disfigurement, affecting a patient's health-related quality of life (HRQoL), which can be measured using patient-reported outcome measures (PROMs). OBJECTIVES: This systematic review identifies PROMs for facial skin cancer and appraises their methodological quality and psychometric properties using up-to-date methods. METHODS: MEDLINE, Embase, PsycINFO, Cochrane and CINAHL were searched systematically in accordance with PRISMA guidelines, identifying all PROMs designed for or validated in facial skin cancer. Methodological quality and evidence of psychometric properties were assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) checklist and criteria proposed by Terwee and colleagues. A best-evidence synthesis and assessment of instrument focus on post-resection reconstruction was also performed. RESULTS: We included 24 studies on 11 PROMs. Methodological quality and psychometric evidence was variable, with the Patient Outcome of Surgery - Head/Neck (POS-H/N), Skin Cancer Index (SCI), Skin Cancer Quality of Life Impact Tool (SCQOLIT) and Essers and colleagues demonstrating the greatest level of validation. None scored well in their relevance to post-skin cancer reconstruction of the face. CONCLUSIONS: This systematic review critically appraises PROMs for facial skin cancer using internationally accepted criteria. The identified PROMs demonstrate a variation in the quality of validation performed, with a need to improve this across all PROMs in the field. Only through improving the quality of available PROMs and their focus on the post-treatment aesthetic and functional outcome will we be able to truly appreciate the concerns of our patients and improve the management of facial skin cancer.

Cancer- and behavior-related genes are targeted by selection in the Tasmanian devil (Sarcophilus harrisii).

Devil Facial Tumor Disease (DFTD) is an aggressive cancer notorious for its rare etiology and its impact on Tasmanian devil populations. Two regions underlying an evolutionary response to this cancer were recently identified using genomic time-series pre- and post-DTFD arrival. Here, we support that DFTD shaped the genome of the Tasmanian devil in an even more extensive way than previously reported. We detected 97 signatures of selection, including 148 protein coding genes having a human orthologue, linked to DFTD. Most candidate genes are associated with cancer progression, and an important subset of candidate genes has additional influence on social behavior. This confirms the influence of cancer on the ecology and evolution of the Tasmanian devil. Our work also demonstrates the possibility to detect highly polygenic footprints of short-term selection in very small populations.

Patient satisfaction in 1,827 patients following various methods of facial reconstruction based on age, defect size and site.

BACKGROUND: Defect coverage following tumor excision requires a case-by-case decision as regards the optimal reconstruction technique. In the head and neck region in particular, the cosmetic outcome is of major importance. The objective of the present study was to compare various reconstruction methods in terms of their functional and aesthetic outcome based on patient age, defect size and site. PATIENTS AND METHODS: Overall, 1,827 patients (age: 18-92 years, median age: 56 years) were contacted. Using a standardized questionnaire, they were asked to assess postoperative complications, cosmetic and functional outcome, and the overall result of the surgical procedure. In addition, patient records were used to collect data on defect size and site as well as the type of surgical procedure employed. RESULTS: Rated as very good or good (86 %), defect closure by advancement flaps received the highest scores in terms of overall result. Other flaps and skin grafts were rated less favorably. Postoperative complications were significantly more common after local flaps. Irrespective of defect size (< 150 mm2 , 150-300 mm2 , > 300 mm2 ), older patients considered the visibility of the scar to be less prominent than younger individuals. Scars in the central facial region were perceived to be more visible. Gender and smoking habits had no impact on the results of the survey. CONCLUSIONS: Scars in the central facial region were perceived to be more prominent. Overall, older individuals considered their scars to be less conspicuous. Even though they are initially associated with greater tension, advancement flaps resulted in very good aesthetic and functional results and a high level of patient satisfaction.

FACE-Q Skin Cancer Module for measuring patient-reported outcomes following facial skin cancer surgery.

BACKGROUND: The patient's perspective of their facial scar after skin cancer surgery influences perception of care and quality of life (QoL). Appearance satisfaction after surgery is also an important but often overlooked treatment outcome. OBJECTIVES: To report the psychometric validation of the FACE-Q Skin Cancer Module consisting of five scales, measuring appearance satisfaction (Satisfaction with Facial Appearance, Appraisal of Scars), QoL (Cancer Worry, Appearance-related Psychosocial Distress) and the patient experience (Satisfaction with Information: Appearance). METHODS: Participants underwent Mohs surgery for facial basal or squamous cell carcinoma or excision of early facial melanoma. Cohort 1 received a set of scales before and after surgery. Cohort 2 received the scales on two occasions in the postoperative period for test-retest reliability. Rasch measurement theory was used to select (item-reduce) the most clinically meaningful items for the scales. Reliability, validity, floor and ceiling effects and responsiveness were also analysed. RESULTS: Of 334 patients, 209 (response rate 62·6%) were included. Rasch analysis reduced the total scale items from 77 to 41. All items had ordered thresholds and good psychometric fit. Reliability was high (Person separation index and Cronbach's α ≥ 0·90) and scales measuring similar constructs were correlated. High floor and ceiling effects were seen for the scales. The Cancer Worry scale demonstrated responsiveness (P = 0·004). CONCLUSIONS: The FACE-Q Skin Cancer Module meet the requirements of the Rasch model providing linearized measurement. Discriminating between patients with minimal appearance or worry impairment may be a limitation. The scales can be used for larger validation studies, clinical practice and research.

UK-based prospective cohort study to anglicise and validate the FACE-Q Skin Cancer Module in patients with facial skin cancer undergoing surgical reconstruction: the PROMISCR (Patient-Reported Outcome Measure in Skin Cancer Reconstruction) study.

INTRODUCTION: Skin cancer is the most common malignancy worldwide, often occurring on the face, where the cosmetic outcome of treatment is paramount. A number of skin cancer-specific patient-reported outcome measures (PROMs) exist, however none adequately consider the difference in type of reconstruction from a patient's point of view. It is the aim of this study to 'anglicise' (to UK English) a recently developed US PROM for facial skin cancer (the FACE-Q Skin Cancer Module) and to validate this UK version of the PROM. The validation will also involve an assessment of the items for relevance to facial reconstruction patients. This will either validate this new measure for the use in clinical care and research of various facial reconstructive options, or provide evidence that a more specific PROM is required. METHODS AND ANALYSIS: This is a prospective validation study of the FACE-Q Skin Cancer Module in a UK facial skin cancer population with a specific focus on the difference between types of reconstruction. The face and content validity of the FACE-Q questionnaire will initially be assessed by a review process involving patients, skin cancer specialists and methodologists. An assessment of whether questions are relevant and any missing questions will be made. Initial validation will then be carried out by recruiting a cohort of 100 study participants with skin cancer of the face pre-operatively. All eligible patients will be invited to complete the questionnaire preoperatively and postoperatively. Psychometric analysis will be performed to test validity, reliability and responsiveness to change. Subgroup analysis will be performed on patients undergoing different forms of reconstruction postexcision of their skin cancer. ETHICS AND DISSEMINATION: This study has been approved by the West Midlands, Edgbaston Research Ethics Committee (Ref 16/WM/0445). All personal data collected will be anonymised and patient-specific data will only be reported in terms of group demographics. Identifiable data collected will include the patient name and date of birth. Other collected personal data will include their diagnosis, treatment performed, method of reconstruction and complications. A unique identifier will be applied to each patient so that pretreatment and post-treatment questionnaire results can be compared. All data acquisition and storage will be in accordance with the Data Protection Act 1998. Following completion of the study, all records will be stored in the Abertawe Bro Morgannwg University (AMBU) Health Board archive facility. Only qualified personnel working on the project will have access to the data.The outputs from this work will be published as widely as possible in peer-review journals and it is our aim to make this open access.

Facial pain and anxiety-like behavior are reduced by pregabalin in a model of facial carcinoma in rats.

Pain and anxiety are common symptoms in head and neck cancer patients. The anticonvulsant pregabalin has therapeutic indication for the treatment of pain and anxiety, and may represent a useful drug for both conditions. Thus, the aim of this study was to investigate the relationship between pain and anxiety in rats with facial carcinoma, as the influence of pregabalin treatment in both aspects. Facial carcinoma was induced by subcutaneous inoculation of Walker-256 tumor cells in the vibrissa pad of Wistar rats. On day 6 after inoculation spontaneous facial grooming and conditioned place preference were assessed as non-evoked pain measurements and facial mechanical hyperalgesia were assessed 3 and 6 days after tumor cells inoculation. Moreover, anxiety-like behavior was evaluated on the elevated plus maze and light-dark transition tests at the same time points. The effect of pregabalin treatment (30 mg/kg, p.o.) was evaluated in all tests. Our results demonstrated that pregabalin treatment reduced the spontaneous facial grooming and induced conditioned place preference 6 days post tumor inoculation. Tumor-bearing rats developed mechanical hyperalgesia starting 3 days post tumor induction, which was also significant on day 6, but the anxiety-like behavior was detected only in tumor-bearing rats that developed mechanical hyperalgesia and only six days after tumor cells inoculation. Both, the mechanical hyperalgesia and the anxiety-like behavior related to the tumor were significantly reduced by pregabalin treatment on day 6. Pregabalin treatment resulted in antinociceptive and anxiolytic-like effects on facial tumor-bearing rats and may represent a promising therapeutic option for cancer patients.

The Tissue Expander Effect in Early Surgical Management of Select Focal Infantile Hemangiomas.

IMPORTANCE: The current standard of treatment for infantile hemangiomas (IHs) involves initial observation for regression throughout infancy and childhood, with or without medical management with ß-blocker medications. Approximately 50% of the lesions respond almost completely to this regimen. However, the remaining 50% of the lesions, especially established focal IHs of the lip, nose, eyelids, forehead, cheek, and scalp, do not regress completely with this regimen or do so leaving a deformity; among these lesions, early surgical management may result in a superior aesthetic and functional outcome. OBJECTIVE: To identify select focal head and neck lesions of IH that will likely not completely involute with medical management and that are ideal for a 1-stage surgical excision. DESIGN, SETTING, AND PARTICIPANTS: In this case series, records of infants and children presenting to a tertiary care vascular anomalies center for management of IHs by the senior author were reviewed. Representative examples of focal IHs of the lips, nose, eyelids, cheek, and glabella demonstrating the tissue expansion effect were selected for presentation. Expert opinion based on more than 20 years of experience of the senior surgeon treating more than 2000 patients with focal IH and long-term clinical follow-up is also provided. MAIN OUTCOMES AND MEASURES: Eradication of the IH while restoring aesthetic form and function to the face. RESULTS: Five examples of patients with focal IHs of the lip, nose, eyelid, cheek, and glabella demonstrating the tissue expander effect who were successfully treated with surgery are presented. The 5 patients with these lesions ranged in age from 3 months to 5 years old, and all of them were female. One of these patients was treated with ß-blockers, and another with steroids, with incomplete response to treatment prior to undergoing surgery. The tissue expander effect of a focal IH on adjacent, unaffected tissue facilitated excision of the lesion and primary closure without distortion of anatomical subunits in all 5 of these cases. Improved cosmesis with either improved or unaffected function was demonstrated. CONCLUSIONS AND RELEVANCE: Clinicians should consider early surgical intervention in infants with select focal infantile hemangiomas in lieu of prolonged observation or medical management. The psychological benefit of early removal of these disfiguring lesions has not been quantified, but is subjectively apparent to clinicians and the families of patients. Furthermore, the costs and unknown long-term sequelae of ß-blocker medication, which is the current standard of treatment for IHs along with observation for regression, have not yet been quantified but will gain increasing salience in the current medical climate. LEVEL OF EVIDENCE: 5.

Effect of Angiofibromas on Quality of Life and Access to Care in Tuberous Sclerosis Patients and Their Caregivers.

BACKGROUND/OBJECTIVES: Facial angiofibromas (AF) have the potential to cause disfigurement in children with tuberous sclerosis complex (TSC). Facial disfigurement can impact the quality of life (QoL) of individuals and their families, leading to negative psychosocial outcomes. QoL has not been studied in TSC patients with AF. METHODS: We conducted a cross-sectional survey study to investigate QoL of TSC patients with AF and their caregivers and to explore the current state of access to treatment for AF. TSC patients and caregivers in TSC clinic at Boston Children's Hospital and through the Tuberous Sclerosis Alliance were recruited to complete QoL surveys including the CADIS, CDLQI, and Skindex-teen questionnaires, and a survey on access to treatment of AF. RESULTS: Fifty-eight patients with TSC and 161 caregivers participated in the study. Caregivers of patients with AF had significantly poorer QoL scores compared to caregivers of those without AF, as measured by a modified CADIS questionnaire (mean 31.7 vs. 11.7, p = 0.004). Among patients with AF, those who received treatment had significantly better QoL scores compared with those without treatment, as measured by the CDLQI (mean 3.8 vs. 9.5, p = 0.001). Forty-one and two-tenths percent of subjects reported never receiving treatment for AF. Forty-seven and three-tenths percent of subjects were prescribed topical rapamycin, 47.7% of whom experienced difficulty with insurance coverage. CONCLUSIONS: Presence and lack of treatment of AF significantly impacts QoL in TSC patients and their caregivers. Access to care for AF is limited by multiple factors and should be addressed by clinicians working with this patient population.

Evaluation of heat hyperalgesia and anxiety like-behaviors in a rat model of orofacial cancer.

Pain and anxiety are commonly experienced by cancer patients and both significantly impair their quality of life. Some authors claim that there is a relationship between pain and anxiety, while others suggest that there is not a direct association. In any case, there is indeed a consensus that anxiety impairs the pain condition beyond be under diagnosed and undertreated in cancer pain patients. Herein we investigated if rats presenting heat hyperalgesia induced by orofacial cancer cell inoculation would display anxiety-like behaviors. In addition, we evaluated if pain blockade would result in alleviation of anxiety behaviors, as well as, if blockade of anxiety would result in pain relief. Orofacial cancer was induced in male Wistar rats by inoculation of Walker-256 cells into the right vibrissal pad. Heat facial hyperalgesia was assessed on day 6 after the inoculation, and on this time point rats were submitted to the elevated plus maze and the light-dark transition tests. The influence of lidocaine and midazolam on heat hyperalgesia and anxiety-like behaviors was assessed. The peak of facial heat hyperalgesia was detected 6 days after cancer cells inoculation, and at this time point, rats exhibited increased anxiety-like behaviors. Local treatment with lidocaine (2%/50µL) caused a marked reduction of heat hyperalgesia, but failed to affect the anxiety-like behaviors, while midazolam (0.5mg/kg, i.p.) treatment failed to change the heat threshold, but induced an anxiolytic-like effect. Altogether, our data demonstrated that rats with orofacial cancer present pain- and anxiety-like behaviors, but brief heat hyperalgesia relief does not affect the anxiety-like behaviors, and vice-versa, in our experimental conditions.

Social Impact of Facial Infantile Hemangiomas in Preteen Children.

IMPORTANCE: Involuted infantile facial hemangiomas (IHs) may adversely affect the social skills of children. OBJECTIVE: To assess the social impact of involuted facial IHs, with or without prior treatment, in preteen children. DESIGN, SETTING, AND PARTICIPANTS: An observational, cross-sectional study of social anxiety and skills in preteen children with facial IHs diagnosed during infancy. The study took place in an academic institution and a community dermatology practice between January 1, 2013, and July 30, 2014. Records on 236 children with IHs located in a cosmetically sensitive area were identified; of those, 144 potential participants (parents) were reached by telephone and mailed study packets. Thirty completed questionnaires were returned. Data analysis was performed from August 1, 2014, to September 7, 2015. INTERVENTIONS: The questionnaires included the following psychiatric scales: (1) Social Anxiety Scale for Children-Revised (SASC-R), completed by parents and children, including the domains of Fear of Negative Evaluation and Social Avoidance/Distress in New Situations (SAD-New) (higher scores indicate greater social anxiety), and (2) Social Competency Inventory (SCI), completed by parents, including the domains of Prosocial Behavior and Social Initiative (lower scores indicate poorer social competency). MAIN OUTCOMES AND MEASURES: Demographics, clinical details, and survey responses were collected. Analysis was conducted using t tests to compare scores for each survey domain with established normative data and between sex as well as between treatment vs nontreatment groups. RESULTS: Of the 144 potential participants, 30 (21%) responded. The mean age of the preteen subjects was 10.0 years (range, 5.4-12.9 years) with a 2:1 female to male ratio. Twenty-five children (83%) had a single IH, and the remaining 5 participants (17%) had multiple IHs, with at least 1 IH in a cosmetically sensitive area. The periocular region was the most common site of the IH (10 [33%]), followed by the nose (6 [20%]), cheek (5 [17%]), forehead (4 [13%]), lip or perioral region (4 [13%]), and ear (1 [3%]). Eighteen children (60%) had received treatment for their IH. With results reported as mean (SD), the SASC-R test showed that social anxiety of the children was not increased over normative data; however, those who did not receive IH treatment had significantly greater anxiety for new situations compared with those who received treatment (SAD-New: 15.5 [5.1] vs 11.5 [3.8]; P = .02). Results of the SCI scale indicated that the Prosocial Orientation domain score for the children was similar to normative data (3.96 [0.48] vs 3.89 [0.55], P = .50). Social Initiative domain scores were significantly poorer in children who did not receive treatment vs those who received treatment (3.45 [0.43] vs 4.03 [0.55]; P = .006). CONCLUSIONS AND RELEVANCE: Preteen children with involuted, untreated facial IHs have higher Social Anxiety domain scores in new situations and decreased Social Initiative domain scores compared with children who receive treatment for facial IH. Although this study is limited by a small sample size, it raises important considerations for whether early treatment of facial IHs in cosmetically sensitive areas has a beneficial effect on social skills in preteens.

¿Cuál es su diagnóstico y cual sería su tratamiento / What is your diagnosis and what would your treatment be?

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A Spanish version of the Skin Cancer Index: a questionnaire for measuring quality of life in patients with cervicofacial nonmelanoma skin cancer.

INTRODUCTION: The Skin Cancer Index (SCI) is the first specific patient-reported outcome measure for patients with cervicofacial nonmelanoma skin cancer. To date, only the original English version has been published. OBJECTIVES: To develop a Spanish version of the SCI that is semantically and linguistically equivalent to the original, and to evaluate its measurement properties in this different cultural environment. MATERIAL AND METHODS: A cross-sectional study was conducted of the cultural adaptation and empirical validation of the questionnaire, analysing the psychometric properties of the new index at different stages. RESULTS: Of 440 patients recruited to the study, 431 (95%) completed the Spanish version of the SCI questionnaire, in a mean time of 6·3 min (SD 2·9). Factor analysis of the scale revealed commonality and loading values of < 0·5 for three of the 15 items. The remaining 12 items converged into two components: appearance/social aspects (seven items) and emotional aspects (five items). Both domains presented a high level of internal consistency, with Cronbach's alpha values above 0·8. The convergent-discriminant validity analysis produced correlations higher than 0·3 for the mental component of the Short Form Health Survey-12v2 Health Questionnaire (correlation coefficient 0·39) and the Dermatology Quality of Life Index (correlation coefficient -0·30). In the test-retest, nine of the 12 items produced a weighted kappa value exceeding 0·4, and for the remaining three items, the absolute agreement percentage exceeded 60%. CONCLUSIONS: The Spanish version of the SCI quality of life scale has been satisfactorily adapted and validated for use in Spanish-speaking countries and populations.

Extensive basal cell carcinoma of the face: an extreme case of denial.

Patients with head and neck cancer are particularly susceptible to using denial as a coping mechanism. While some forms of denial may help patients achieve better levels of physical functioning, persistent denial can serve as a major barrier to treatment. We report a case of extreme denial by a 60-year-old woman with an extensive basal cell carcinoma of the face that had been neglected for more than 20 years. We present this case to raise awareness of the potential danger of denial, and we discuss strategies that physicians can undertake to properly manage patients who engage in it. Since the diagnosis and treatment of head and neck cancer can result in profound psychological trauma, gaining an appreciation for how patients cope with it is an important part of the comprehensive care of head and neck oncology patients.

The effect of visible facial difference on personal space during encounters with the general public.

Previous research has found that people with visible differences are granted more physical space than people without visible differences during encounters with the general public. This study aimed to examine whether given significant sociocultural changes, this remains the case in contemporary Australia. The personal space afforded to a person with a visible difference (with a temporary difference--a scar and a permanent difference--a strawberry hemangioma) or a person without a visible difference by 408 pedestrians on a busy pedestrian walkway in the central business district of Adelaide, Australia, was measured. This was a replication and extension of a study by N. Rumsey, R. Bull, and D. Gahagan (1982). Pedestrians stood no further away from the model in the visibly different conditions than in the nonvisibly different conditions. Pedestrians stood an average of 128 cm away in the control condition, 120 cm away in the scar condition, and 140 cm away in the birthmark condition. People did not stand to the nonvisibly different (left) side of the model more frequently in the visibly different conditions than in the nonvisibly different conditions. As the original research by N. Rumsey et al. is frequently cited as representing the current situation for people with visible differences, failing to replicate the result is significant. Changes may be due to either recent sociocultural changes promoting inclusion of disability or increasing social taboo against expressing overt prejudice.

Quality of life assessment in patients treated for metastatic cutaneous squamous cell carcinoma of the head and neck.

BACKGROUND: Treatment for metastatic cutaneous head and neck squamous cell carcinoma is usually multimodal and associated with morbidity. This study aimed to evaluate the impact of treatment on patients' quality of life. METHOD: Cross-sectional survey of 42 patients (35 men, 7 women) at least 6 months after metastatic cutaneous head and neck squamous cell carcinoma treatment, using two standardised quality of life questionnaires: the Functional Assessment of Cancer Therapy - Head and Neck questionnaire and the Facial Disability Index, with statistical analysis to identify potential predictors of outcome. RESULTS: Female gender correlated with significantly lower Facial Disability Index physical function scores (p = 0.017). Alcohol consumption correlated with significantly better scores for Functional Assessment social well-being (p = 0.016), general total score (p = 0.041) and overall total score (p = 0.033), and for Facial Disability Index physical function (p = 0.034). Marital status, education, employment, chemotherapy, time from last treatment, parotidectomy and facial nerve sacrifice did not affect quality of life. The commonest patient complaints were dry mouth (76 per cent), altered voice quality and strength (55 per cent), and physical appearance (45 per cent). CONCLUSION: Female gender predicts worse quality of life, while alcohol consumption (versus none) predicted for better quality of life.