The quality of life in women with cervical cancer and precancerous lesions of Han and ethnic minorities in Southwest China.

BACKGROUND: As patients with cervical cancer and precancerous lesions can be diagnosed at early stage and live longer, it is imperative to understand their health-related quality of life so that better cancer-related policies could be promoted and reasonable distribution of limited resources could be implemented. We conducted a cross-sectional study in the Third Affiliated Hospital of Kunming Medical University to assess the health-related quality of life in our targeted population. Due to the characteristics of Yunnan nationality, our study population includes both Han people and ethnic minorities. METHODS: A cross-sectional study was conducted from January 2019 to December 2020, and 300 patients were selected, who were initially diagnosed with cervical cancer and cervical intraepithelial neoplasia (CIN) pathologically. EQ-5D questionnaire was used to evaluate their quality of life. RESULTS: Patients in Han and ethnic minorities showed good comparability. EQ-5D VAS score was statistically significant between Han and ethnic minorities (mean, 85.42 vs. 81.01; P<0.05). EQ-5D utility score was slightly different but without statistical significance between the two groups (mean, 0.959 vs. 0.932; P>0.05). Nationality, economic trouble, menopause status and participation of China National Cervical Cancer Screening Program (CNCCSP) are influencing factors of HRQoL among women with cervical cancer and precancerous lesions. Besides, we also found low awareness in the CNCCSP and human papilloma virus vaccine, as well as low participation in the national screening program. CONCLUSION: The results of our study imply that the difference of HRQoL does exist between Han people and ethnic minorities with cervical cancer and precancerous lesions. Health providers and health-related departments need to invest more health and financial resources to expand the awareness and participation of the screening project. More efforts should be made in underdeveloped minority areas to assure the accessibility of health resources and interventions. To mitigate economic trouble caused by the diseases, more equal insurance reimbursement should be suggested and implemented in people with or without employee insurance.

Anxiety and distress following receipt of results from routine HPV primary testing in cervical screening: The psychological impact of primary screening (PIPS) study.

We used a cross-sectional survey to examine short-term anxiety and distress in women receiving different results following routine human papillomavirus (HPV) primary testing at cervical screening. Participants were women aged 24-65 (n = 1,127) who had attended screening at one of five sites piloting HPV primary screening in England, including a control group with normal cytology who were not tested for HPV. Women completed a postal questionnaire ~2 weeks after receiving their screening result. Unadjusted mean anxiety scores ranged from 32.9 (standard deviation [SD] = 12.2) in HPV-negative women to 42.1 (SD = 14.9) in women who were HPV-positive with abnormal cytology. In adjusted analyses, anxiety was significantly higher in women testing HPV-positive with either normal cytology (mean difference [MD] = 3.5, CI: 0.6-6.4) or abnormal cytology (MD = 7.2, CI: 3.7-10.6), than the control group. Distress was slightly higher in women who tested HPV-positive with abnormal cytology (MD = 0.9, CI: 0.02-1.8), than the control group. We also found increased odds of very high anxiety in women who tested HPV-positive with normal or abnormal cytology compared to the control group. This pattern of results was only observed among women receiving their first HPV-positive result, not among women found to have persistent HPV at 12-month follow-up. Testing HPV-positive with normal cytology for the first time, is associated with elevated anxiety despite carrying very low immediate cervical cancer risk. However, receiving the same test result at 12-month early recall does not appear to be associated with higher anxiety, suggesting anxiety may normalise with repeated exposure and/or over time.

Psychological and utility-based quality of life impact of screening test results for anal precancerous lesions in gay and bisexual men: baseline findings from the Study of the Prevention of Anal Cancer.

OBJECTIVE: Gay, bisexual and other men who have sex with men (GBMSM), particularly HIV-positive GBMSM, are at increased anal cancer risk compared with the general population. This study examined the psychological and quality of life (QoL) impact of receiving abnormal anal cancer screening results during the baseline visit of the Study of the Prevention of Anal Cancer (SPANC). METHODS: SPANC was a prospective cohort study of the natural history of anal human papillomavirus (HPV) and associated abnormalities in GBM aged 35 years and over. Participants completed questionnaires including aspects of health-related QoL (HR-QoL) and psychosocial functioning at baseline. Participants underwent procedures including an anal swab for cytology, and high-resolution anoscopy with biopsy of any possibly HPV-related abnormality. Questionnaires were readministered 2 weeks and 3 months after participants were given cytology and histology results. Perceived test result served as the study factor. RESULTS: Participants with perceived abnormal results (n=232) reported poorer HR-QoL (mean difference=1.8; p=0.004) and lower utility-based QoL (mean difference=0.02; p=0.018) 2 weeks after screening than individuals with perceived normal results (n=268). These differences did not persist at 3-month follow-up. A greater proportion of participants who perceived their results as abnormal reported feeling worse than usual about their anal health and anal cancer fear (p's<0.001), experienced more intrusive thoughts about their results (p's≤0.006) and felt more likely to develop cancer than other gay men their age (p's≤0.025) at both time points than those with perceived normal results. CONCLUSIONS: Providing abnormal results may cause psychological distress and impact HR-QoL, with sustained intrusive thoughts, increased cancer worry and perceived cancer risk. The potential for psychological harm needs to be considered when implementing anal cancer screening programmes.

The role of rehabilitation in patients undergoing oesophagectomy for cancer and pre-malignant disease: A qualitative exploration of the views of patients, carers and healthcare providers.

OBJECTIVE: Oesophagectomy for cancer is associated with significant morbidity and mortality, and reduced quality of life. Structured rehabilitation potentially offers improved physical and psychological outcomes. We aimed to explore patient, carer and healthcare provider attitudes and preferences towards the role of rehabilitation. METHODS: We interviewed 15 patients who had undergone an oesophagectomy, 10 carers and 13 healthcare providers about perceived impacts of treatment; preferred components of a rehabilitation program; barriers/enablers of support provision; and participation in rehabilitation programs. Data were analysed using framework analysis. RESULTS: The overarching theme was "Getting back to normal." Diagnosis of disease signified a disruption to the normal trajectory of patients' lives and the post-treatment period was characterised as striving to return to normal. Patients and carers focused on rehabilitation needs post-treatment including dietary support, physiotherapy and healthcare provider support. Healthcare providers described rehabilitation as potentially beneficial from the pre-treatment phase and, along with carers, highlighted the importance of psychological support. Barriers included access to services, cost of service provision and appointment burden. CONCLUSION: A need for rehabilitation services was identified by healthcare providers from the point of diagnosis, rather than only after surgery. Implications include improved service provision by healthcare institutions for patients undergoing oesophagectomy.

Perspectives of Screening-Eligible Women and Male Partners on Benefits of and Barriers to Treatment for Precancerous Lesions and Cervical Cancer in Kenya.

BACKGROUND: Cervical cancer is the leading cause of female cancer mortality in Kenya. Kenya's National Cervical Cancer Prevention Program Strategic Plan outlines efforts to reduce the burden; however, treatment services remain limited. This study identified male and female perspectives regarding benefits, facilitators, and barriers to treatment for precancerous lesions and cervical cancer. MATERIALS AND METHODS: Ten focus groups were conducted in Nairobi and Nyanza in 2014 with females aged 25-49 years (n = 60) and male partners (n = 40). Participants were divided into groups dependent on screening status, sex, language, and geographic location. Qualitative analytic software was used to analyze transcribed and translated data. RESULTS: Treatment was endorsed as beneficial for the prevention of death and the improvement of wellness, quality of life, symptoms, and family life. Barriers reported by males and females included the following: (a) concerns about side effects; (b) treatment-related fear and stigma; (c) marital discord; (d) financial and access issues; (e) religious and cultural beliefs; and (f) limited knowledge. Male endorsement of wanting to improve knowledge and communication with their partners, in spite of stigmatizing beliefs and misperceptions regarding females with abnormal screening results or those who have been diagnosed with cancer, was novel. CONCLUSION: Incorporating qualitative data on benefits of and barriers to treatment for precancerous lesions and cervical cancer into Kenya's national priorities and activities is important. These findings can be used to inform the development and successful implementation of targeted, region-specific community outreach and health messaging campaigns focused on alleviating the country's cervical cancer burden. IMPLICATIONS FOR PRACTICE: This article provides important insight into female and male partner perspectives regarding benefits, facilitators, and barriers to treatment for precancerous lesions and cervical cancer. These novel research findings can inform the development of targeted community health interventions, educational messages, and resources and aid stakeholders in strengthening strategic plans regarding treatment coverage and cervical cancer prevention. Because several treatment barriers identified in this study are similar to barriers associated with cervical cancer screening in low- and middle-resourced countries, effective messaging interventions could address barriers to receipt of both screening and treatment.

HPV primary cervical screening in England: Women's awareness and attitudes.

BACKGROUND: Primary human papillomavirus (HPV) cervical screening is due to be implemented in England within the next 2 years; however, the acceptability of HPV testing as the primary screening test is unclear. This study explores women's awareness and attitudes toward HPV testing/screening. METHODS: Qualitative interviews (semistructured and focus group) were conducted with 46 women (aged 25-65 years) from community and secondary care settings. Data were analyzed by using the inductive-framework method. RESULTS: Women were unaware that cervical screening currently includes HPV testing and lacked HPV-related knowledge. Emotions of shock, fear, and anxiety were reported upon receiving a positive HPV result. For women in long-term relationships, the realization that HPV is a sexually transmitted infection was seen as a barrier to primary HPV testing. Knowledge that HPV testing is a screening test to prevent cervical cancer did not change their attitudes. Women debated the need for continued screening following a negative result. Women feared judgment by the community if they participated with primary HPV screening because they were being tested for a sexually transmitted infection, with the possible attendant perception that they had adopted a high-risk lifestyle in comparison to nonattenders. CONCLUSIONS: The acceptability of HPV testing may be a limiting factor in encouraging participation with screening in the future.

[Analysis of psychological status and relevant factors of patients with esophageal and gastric cardia precancerous lesions in Linzhou of Henan].

Objective: To explore the psychological status and related factors in patients with precancerous of esophageal and gastric cardia in Linzhou of Henan. Methods: Clinical psycho-rating scale of Social Support Rating Scale (SSRS), Self-Rating Anxiety Scale (SAS, score ≥50 points with symptoms of anxiety) and Self-Rating Depression Scale (SDS, score ≥53 points with the symptoms of depression) were applied to survey life events and psychological status of subjects who aged 40-69 years old and participated in"The Early diagnosis and Early Treatment"program in Linzhou cancer hospital from July 2015 to Jan 2016. Patients with lower intraepithelial neoplasia or high-grade intraepithelial neoplasia were selected as precancerous lesions (n=118), and patients with normal grade were selected as healthy controls (n=210). Compare the differences of the scores between the two groups, and the logistic regression model was used to analyze the related factors of precancerous lesions and psychological status of the study subjects. Results: Precancerous lesions included esophageal (72 cases), gastric cardia (40 cases), esophageal and cardia dual source (6 cases); Precancerous lesions and healthy controls aged (57.17±7.71) and (53.12±7.99) years old, the difference was statistically significant (P<0.001). The anxiety and depression scale showed that the scores of SAS and SDS scores in the precancerous lesions were (37.18±10.01), (40.44±8.37) points, and (34.02±6.63), (38.49±8.73) points in control group, the difference was statistically significant (P=0.002, 0.032). While the social support total score (38.26±5.26), and subjective support score (24.08±3.83) and objective support score (7.50±1.89) in control group were all higher than those of precancerous group (36.80±6.18, 23.01±3.93, 6.93±1.57), and the difference were statistically significant (P=0.024, 0.016, 0.004). In addition, the Logistic analysis showed that subjects with low objective social support, subjective social support and anxiety symptoms were more likely to develop precancerous lesions, and the OR were 0.81, 0.72 and 1.05, respectively (P=0.028, 0.005, 0.009). Conclusion: Social support, anxiety and depression status may be related to the occurrence and development of esophageal and gastric cardia precancerous lesions.

Sexual Activity, Psychosexual Distress, and Fear of Progression in Women With Human Papillomavirus-Related Premalignant Genital Lesions.

INTRODUCTION: Genital human papillomavirus (HPV) infections are very common in women 18 to 30 years old and substantially affect women's sexual health. AIM: To examine sexual activity, psychosexual distress, and fear of progression in women diagnosed with HPV-related precancerous genital lesions. METHODS: In this observational study, women diagnosed with premalignant lesions of the cervix, vagina, or vulva were recruited from a university hospital-based colposcopy clinic. MAIN OUTCOME MEASURES: Quantitative data from three validated patient-administered questionnaires (Sexual Activity Questionnaire, German version of the Cervical Dysplasia Distress Questionnaire, and Fear of Progression Questionnaire) were compared within the study population, according to the location of the genital lesion, and with relevant reference populations. Qualitative data from two written open-ended questions about women's thoughts regarding diagnosis and information were analyzed. RESULTS: Two-hundred nine women completed the questionnaires. Seventy-eight percent of women (n = 162) were referred for evaluation of suspect lesions of the cervix, 8% (n = 17) of the vagina, and 14% (n = 30) of the vulva. There were no significant differences in questionnaire results among the three patient groups, except for sexual consequences (Cervical Dysplasia Distress Questionnaire) and recent sexual activity (Sexual Activity Questionnaire). Women with vulvar lesions were most likely to worry about sexual consequences (ie, being unable to have children, being sexually less attractive, or infecting a sexual partner; P = .04). The Sexual Activity Questionnaire subscales sexual pleasure (P = .15) and sexual habits (P = 1.00) were similar to those in a healthy control population, whereas sexual discomfort (P = .51) was comparable to that in a reference population of women who survived cervical cancer. The subscale partner-specific concerns (Fear of Progression Questionnaire) was similar to that in a reference population of patients with cancer (P = .28). CONCLUSION: HPV-related precancerous genital lesions, especially of the vulva, are likely to cause concerns about sexual health. Effective information and communication are important to lessen negative sexual consequences and anxiety.

Are Common Skin Diseases among Norwegian Dermatological Outpatients Associated with Psychological Problems Compared with Controls? An Observational Study.

Dermatological disease has been shown to be associated with psychological comorbidity. The aim of this observational study is to describe the distribution of skin disease and the prevalence of depression, anxiety and stress among Norwegian dermatological outpatients. Thirteen percent of outpatients had clinical anxiety compared with 3.7% of healthy controls, and 5.8% had clinical depression compared with 0.9% of controls. Adjusted odds ratio for clinical anxiety was 4.53 in patients compared with controls, and for clinical depression 6.25, which is much higher than previously described in a larger European study. Patients with tumours had less depression. Chronic inflammatory skin conditions had an especially high impact on patient's psychological wellbeing and should not be undervalued relative to, for instance, skin cancer in health strategies. These results argue strongly for including skin disease prevention and treatment in future health strategies.

Level of awareness of oral cancer and oral potentially malignant disorders among medical and dental undergraduates.

The aim of this study was to investigate the awareness of oral potentially malignant disorders (OPMD) and oral cancer among medical and dental students of the University of Peradeniya. A pre-tested, self-administered questionnaire was used among 1006 students. Majority were medical students (74.3%), females (60.5%), and in the second year (25.2%). About 54% of respondents had poor knowledge. Dental students had a significantly higher knowledge and female students showed greater awareness. About 90% of medical students had never examined a patient with OPMD, and 79.5% of them had not examined one with oral cancer. Medical undergraduates must receive adequate education about OPMD and cancer.

Unmet information needs and clinical characteristics in patients with precancerous oral lesions.

The purpose of this study was to investigate associated factors of the unmet information needs of patients with precancerous oral lesions. For this cross-sectional descriptive study, we recruited patients with precancerous oral lesions from the otolaryngology outpatient department of a single medical centre in central Taiwan. Patients were assessed using a set of structure questionnaires to measure patients' state anxiety levels, attitudes towards cancer prevention and need for information. Patients' anxiety and attitudes towards cancer prevention were evaluated based on unmet needs and associated factors were determined. Among the 106 subjects surveyed, the most prominent unmet information needs were about obtaining the test results as soon as possible. Patients with precancerous oral lesions who had high levels of state anxiety, long duration of time since quitting betel nut chewing and were without a history of oral cancer were more likely to have unmet information needs. A high level of anxiety about precancerous oral lesions was more prevalent among patients with unmet information needs than among those whose information needs were met. Health education and individual counselling should be provided to satisfy the information needs of this population.

'I don't care whether it's HPV or ABC, I just want to know if I have cancer.' Factors influencing women's emotional responses to undergoing human papillomavirus testing in routine management in cervical screening: a qualitative study.

OBJECTIVE: To explore emotional responses, and predictors of negative reactions, among women undergoing human papillomavirus (HPV) tests in routine clinical practice. DESIGN: Exploratory qualitative interview study. SETTING: A large busy colposcopy clinic in a Dublin hospital. SAMPLE: Twenty-seven women who had had an HPV DNA test in the previous 6 months following one or more low-grade cytology tests or treatment for cervical intraepithelial neoplasia (CIN). METHODS: In-depth semi-structured interviews were conducted. Interview transcripts were analysed using a thematic approach (Framework Analysis). MAIN OUTCOME MEASURES: Women's emotional responses and predictors of negative emotional reactions. RESULTS: For most women, having a test for high-risk HPV types generated little negative or positive emotional impact. Adverse emotional responses related to HPV infection rather than testing. Factors that influenced whether women experienced negative emotional responses were: concerns over abnormal cytology or diagnosis of CIN; HPV knowledge; awareness of HPV being sexually transmitted; awareness of HPV prevalence; and HPV information needs. Women's concerns about abnormal cytology/CIN dominated all other issues. CONCLUSIONS: These qualitative data suggest that in the context of follow up of abnormal cytology or treatment for CIN, the emotional impact of HPV testing may be modest: women's primary concerns at this time relate to abnormal cytology/CIN.

Patients' intuitive judgments about surveillance endoscopy in Barrett's esophagus: a review and application to models of decision-making.

Adherence to practice guidelines for endoscopic surveillance of Barrett's esophagus is equivocal with evidence of underutilization and overutilization. While physicians report strong agreement with and adherence to recommended surveillance endoscopy (esophagogastroduodenoscopy [EGD]) guidelines, less is known about modifiable barriers and facilitators shaping patients' adherence behaviors. The aim of this study is to conduct a structured literature review of studies exploring patients' perspectives regarding surveillance EGD and to place these results within a conceptual framework. A structured literature review of PubMed, Cochrane, and Google Scholar databases with qualitative thematic analysis was performed. Six studies met eligibility criteria. Analysis of results identified five distinct themes. First, patients' objective cancer risk estimates are consistent with subjective risk perceptions, but neither is associated with EGD surveillance. Second, patients have strong beliefs in the benefits of cancer screening and surveillance and trust in their doctors. Third, anxiety and depression symptoms are related to risk perceptions and outcome expectancies of surveillance. Fourth, endoscopic surveillance itself has affective and physical consequences. Finally, health services and system variables are related to risk perception and EGD surveillance. These themes coherently fit within an integrated model of intuitive decision-making and health behaviors. Studies meeting eligibility criteria were heterogeneous in terms of their study objectives and findings. Quantitative meta-analyses of study findings could not be performed. To improve adherence, endoscopic surveillance programs should consider how patients intuitively frame risks and benefits and patients' emotional reactions to the endoscopy procedure, and focus on how physicians communicate recommendations.

Living in limbo: Ethics and experience in a conversation about persistent oral lesions.

This case report presents a conversation that the authors had with a patient who is suffering from oral lichen planus and oral cancer. The reason that the authors approached the patient for an interview was to find out why he decided to enroll in an experimental study related to his oral cancer. The patient reported that it was "the waiting" that led him to enroll in this study--that is, the pressure of waiting for oral cancer to reemerge was simply unbearable, and enrolling in this experimental study enabled him to take a more proactive approach to his illness. The authors view this "waiting" as a "limbo experience" and reflect on the implications of this limbo experience for dental ethics and research ethics.

Overutilization of endoscopic surveillance in nondysplastic Barrett's esophagus: a multicenter study.

BACKGROUND: Guidelines suggest that patients with nondysplastic Barrett's esophagus (BE) undergo endoscopic surveillance every 3 to 5 years, but actual use of surveillance endoscopy and the determinants of variation in surveillance intervals are not known. OBJECTIVE: To measure use of surveillance endoscopy and its variation in patients with nondysplastic BE. DESIGN: Multicenter, cross-sectional study. SETTING: Three sites in Arizona, Minnesota, and North Carolina. PATIENTS: This study involved patients who had prevalent BE without a history of high-grade dysplasia or esophageal adenocarcinoma. INTERVENTION: Participants were given validated measures of quality of life, numeracy, and cancer risk perception, and the total number of prior endoscopic surveillance examinations was measured. MAIN OUTCOME MEASUREMENTS: Oversurveillance was defined as >1 surveillance examination per 3-year period. RESULTS: Among 235 patients with nondysplastic BE, 76% were male and 94% were white. The average (± standard deviation [SD]) duration of BE was 6.5 ± 5.9 years. The mean (± SD) number of endoscopies per 3-year period was 2.7 ± 2.6. Oversurveillance was present in 65% of participants, resulting in a mean of 2.3 excess endoscopies per patient. Neither numeracy skills nor patient perception of cancer risk were associated with oversurveillance. LIMITATIONS: Endoscopies were measured by patient report, which is subject to error. Results may be generalizable only to patients seen in academic centers. CONCLUSION: Most patients with nondysplastic BE had more surveillance endoscopic examinations than is recommended by published guidelines. Patient factors did not predict oversurveillance, indicating that other factors may influence decisions about the interval and frequency of surveillance examinations.

Patients' awareness of the potential benefit of smoking cessation. A study evaluating self-reported and clinical data from patients referred to an oral medicine unit.

The present study analyzed history of smoking and willingness to quit smoking in patients referred for diagnosis and treatment of different oral mucosal lesions. Prior to the initial clinical examination, patients filled in a standardized questionnaire regarding their current and former smoking habits and willingness to quit. Definitive diagnoses were classified into three groups (benign/reactive lesions, premalignant lesions and conditions, and malignant diseases) and correlated with the self-reported data in the questionnaires. Of the 980 patients included, 514 (52%) described themselves as never smokers, 202 (21%) as former smokers, and 264 (27%) as current smokers. In the group of current smokers, 23% thought their premalignant lesions/conditions were related to their smoking habit, but only 15% of the patients with malignant mucosal diseases saw that correlation. Only 14% of the smokers wanted to commence smoking cessation within the next 30 days. Patients with malignant diseases (31%) showed greater willingness to quit than patients diagnosed with benign/reactive lesions (11%). Future clinical studies should attempt (1) to enhance patients' awareness of the negative impact of smoking on the oral mucosa and (2) to increase willingness to quit in smokers referred to a dental/oral medicine setting.

Impact of human papillomavirus-related lesions on quality of life: a multicenter hospital-based study of women in Mainland China.

INTRODUCTION: To date, few studies using a human papillomavirus (HPV)-specific questionnaire have focused on the impact of quality of life (QoL) among women with HPV-related lesions in developing countries. METHODS: A multicenter, hospital-based survey was conducted from 2007 to 2008. Women 18 to 65 years old who had HPV-related lesions or underwent HPV-related screening interventions during the past 3 months were recruited and divided into 6 groups based on different diagnoses: (1) normal Papanicolaou (Pap) test result, (2) abnormal Pap test result without HPV test, (3) external genital warts (GWs), (4) precancerous cervical lesions (confirmed by histological diagnoses), (5) HPV positive (HPV+) after abnormal Pap test result, and (6) HPV negative (HPV-) after abnormal Pap test result. Psychosocial burdens were assessed by the HPV impact profile (HIP). The HIP contains 7 domains and 29 questions, and its scores reversely relates to the subjects' QoL. RESULTS: A total of 2605 eligible women were enrolled. Women with GWs had the highest mean HIP scores (52.2), followed by the group with precancerous cervical lesions (48.6), HPV+ after abnormal Pap (45.8), abnormal Pap test result without HPV test (44.1), HPV- after abnormal Pap (43.1), and women with normal Pap endured the least (33.1). "Sexual impact," "self-image," and "control/life impact" were the 3 QoL-related domains that affected women the most. The psychosocial burden of urban residents was heavier than that of rural women. CONCLUSIONS: Women with GWs and precancerous cervical lesions had the worst psychological burden, and sexual-related concern was the primary cause of burdens regarding HPV-related diseases for Chinese women. In addition to basic medical treatments, psychosocial support systems should be established, and consultation services should be generalized to help alleviate these burdens.

Impact of chronic oral mucosal disease on daily life: preliminary observations from a qualitative study.

OBJECTIVE: To explore the experience of daily life of persons with chronic oral mucosal conditions. METHODS: Purposive sampling was used to recruit patients from the Oral Medicine Unit of Cork University Dental School and Hospital. An experienced independent facilitator convened the focus groups and conducted individual interviews in a non clinical setting. Focus groups were mixed with regard to gender, age, chronic oral mucosal condition, time since diagnosis and severity. A total of 24 patients took part, including patients with oral lichen planus, mucous membrane pemphigoid, pemphigus vulgaris, recurrent aphthous stomatitis and orofacial granulomatosis. RESULTS: Analysis of the interviews revealed that patient views could be divided into the following themes - biopsychosocial issues, treatment limitations and side effects, unpredictability of the conditions and the potential for malignant transformation and issues for the healthcare professionals. CONCLUSION: Chronic oral mucosal conditions impact upon the experience of daily life of patients in a variety of areas from physical health and functioning, to concerns about their future. The role of the oral medicine practitioner in treating patients with chronic oral mucosal diseases extends beyond active management and symptomatic relief to the management of all aspects of these conditions that impact upon their daily lives.

Living in limbo: ethics and experience in a conversation about persistent oral lesions.

This case report presents a conversation that the authors had with a patient who is suffering from oral lichen planus and oral cancer. The reason that the authors approached the patient for an interview was to find out why he decided to enroll in an experimental study related to his oral cancer. The patient reported that it was "the waiting" that led him to enroll in this study--that is, the pressure of waiting for oral cancer to re-emerge was simply unbearable, and enrolling in this experimental study enabled him to take a more proactive approach to his illness. The authors view this "waiting" as a "limbo experience" and reflect on the implications of this limbo experience for dental ethics and research ethics.