Bipolar disorder and sexuality: a preliminary qualitative pilot study.

BACKGROUND: Individuals with mental health disorders have a higher risk of sexual problems impacting intimate relations and quality of life. For individuals with bipolar disorder (BD) the mood shifts might to a particular degree affect their sexual function with possible hypersexual interest during manic episodes and low sexual interest during depressive episodes. The diagnosis is often given in late adolescence, which may impact sexual identity and development. Only a few studies have looked at BD and sexual life, with no qualitative research on the topic. We conducted a qualitative pilot study exploring sexuality in connection to mood swings in five participants with BD. RESULTS: Thematic content analysis revealed five themes: (1) sexual drive and impulses, (2) sexual behavior, (3) thoughts and feelings in relation to sexual issues, (4) intimate relationships, and (5) sexuality and identity. During manic episodes the participants described having a higher sexual drive, leading for some to more sexual interactions. During depressed episodes, the sexual drive in the three female participants was low, however, in the two men, rather than a reduced sexual drive, a more self-destructive way of engaging in sex prevailed. The sexual outgoing behavior during manic phases was described as joyful, with no feelings of shame connected to it. However, the shifts in sexual drive connected to mood shifts affected the participants' relationships negatively. Further, all the participants described having outgoing sexual behavior in their youth. CONCLUSIONS: Overall, changes in sexual drive may act as a trigger or early warning symptoms of new episodes, pinpointing the clinical relevance of addressing sexuality in individuals with BD. In general, sexual drive followed affective episodes. However, during depressive episodes sex could be, instead of reduced drive, associated with negative feelings. All participants described having an outgoing sexual behavior in their youth before the onset of BD, which might be essential to consider if there is a clinical suspension of BD in an individual.

Patient Attitudes to Routine Cognitive Testing in Multiple Sclerosis.

BACKGROUND AND AIM: In recent years, cognitive dysfunction (CD) in multiple sclerosis (MS) has received increased attention. Neuropsychological tests have been developed allowing to monitor changes in patients' cognitive functions. Knowledge is lacking, however, about patients' attitudes towards introducing routine cognitive testing. It was the aim of this qualitative study to explore this. MATERIALS AND METHODS: Based on a literature study, semi-structured interview guides were designed and used in qualitative interviews with 12 Danish patients. Participants were selected to represent different perspectives on CD and included patients with relapsing-remitting MS (RRMS) and secondary-progressive MS (SPMS), women and men with varying time since diagnosis and cognitive test scores using the Symbol Digit Modalities Test (SDMT). The data were analysed using a constructivist approach in order to identify significant relations between the quality of life (QoL) impact of CD, and attitudes towards routine cognitive testing. RESULTS: Most participants reported several subtypes of CD, yet objective CD did not coincide with subjective CD nor did it translate directly into poorer QoL. Overall, CD appeared to have larger impact on the QoL of patients with RRMS and higher SDMT scores, compared to patients with SPMS and lower SDMT scores. The QoL impact of CD manifested itself in the encounter between individual symptoms, expectations, coping and meaningful activities. All patients supported an introduction of routine cognitive testing, but patients with RRMS and SPMS had different main reasons to do so. These were related to supporting research, optimising treatment decisions, and providing documentation of this invisible MS symptom. CONCLUSION: All aspects of MS patients' QoL may be affected by CD. Introducing routine cognitive testing was widely supported by patients in all phases of MS calling for comprehensive care taking both physical and cognitive difficulties into account.

Familial hypercholesterolaemia reduces the quality of life of patients not reaching treatment targets.

INTRODUCTION: Familial hypercholesterolaemia (FH) is the most common monogenic disorder associated with premature cardiovascular disease. If untreated, life expectancy in heterozygous FH patients is shortened by 20-30 years compared with the general population. Nevertheless, treatment goals are only met in approximately 50% of patients. This comparative study examined the quality of life (QoL) impact of FH in patients who had and had not reached the target of treatment. METHODS: Two qualitative focus group interviews were carried out with a total of ten FH patients. A semi-structured interview guide included questions identified in a preceding literature study. The data were analysed using a medical anthropological approach. RESULTS: While having FH did not have much impact on well-treated patients' QoL, patients who had not reached the treatment target had markedly more concerns. They had experienced severe side-effects and worried about their own and their relatives' health. They were concerned about the long-term impact of not being effectively treated including the risk that coronary heart disease could cause their premature death or disability and inability to care for their children, in particular. The women had issues with stigma and self-efficacy. CONCLUSIONS: The QoL impact of FH is related to treatment efficacy. These findings need to be addressed in the management of FH patients. Particular attention should be paid to those who are not presently reaching the target of treatment. FUNDING: The study was funded by a research grant from Amgen. TRIAL REGISTRATION: not relevant.

Making decisions about colorectal cancer screening. A qualitative study among citizens with lower educational attainment.

BACKGROUND: Few decision aids (DAs) have been developed to support an informed choice to citizens with lower educational attainment about colorectal cancer screening. The aim of this study was to identify information needs and preferences for formats and content in a DA for this group of citizens. METHODS: Four focus groups were conducted among Danish men and women aged 50-74 years with lower educational attainment. A semi-structured interview guide was developed to explore participants' perceptions about colorectal cancer screening and wishes for a DA. The interviews were transcribed and analysed using an ethnographic approach. RESULTS: The participants appreciated information about the causes, symptoms, incidence and mortality of colorectal cancer compared with other common cancers. The majority preferred the information to be presented in a clear and simple way with numbers and figures kept to a minimum. Values clarification exercises were not found useful. Receiving a screening kit to collect a sample of faeces along with the invitation letter was seen by the participants as a clear request from the health authorities to get screened. However, the overall message in the DA was perceived as ambiguous by the participants as it both recommended screening and seemed to disclaim responsibility for it. CONCLUSION: The results are relevant to a discussion of the delicate balance between participants' call for a clear recommendation, and the purpose of a DA to present options in a neutral and balanced way. This discussion is relevant beyond the group of citizens with lower educational attainment.

Patients use normalisation techniques to cope with the quality-of-life effects of anal cancer.

INTRODUCTION: Anal cancer is a rare malignancy, but during the past three decades, its incidence has increased in both sexes. Approximately 90% of anal cancers are related to human papillomavirus infection. The primary treatment for anal cancer is radiotherapy or radio-chemotherapy. This quality of life (QoL) study aimed at obtaining in-depth knowledge about patients' experiences with anal cancer and its impact on their QoL. METHODS: A literature study identified topics for qualitative interviews with six anal cancer patients who had received oncological treatment and were without recurrent disease. The interviews were analysed using a medical anthroo-logical approach focusing on patients' health-related phys-ical, psycho-sexual and social QoL. RESULTS: The participants suffered from common sequelae of anal cancer treatment, mainly ano-genital pain, reduced sphincter function and sexual dysfunction. The participants employed a number of "normalisation techniques", including dissociation from other cancer patients, delimitation of the cancer to a perceived external and peripheral body part and fast resumption of their usual activities. CONCLUSION: Anal sphincter dysfunction and sexual problems after radiotherapy for anal cancer may have a major impact on patients' QoL. By maintaining normalcy, patients tried to distance themselves from this tabooed cancer disease. FUNDING: not relevant. TRIAL REGISTRATION: not relevant, but approval was obtained from the Danish Data Protection Agency.

Patient perspectives on quality of life after penile cancer.

INTRODUCTION: Penile cancer (PC) is a rare, but ominous disease. In 50-60% of squamous cell carcinomas of the penis, human papilloma virus infection, particularly with types 16 and 18, is part of the pathogenesis. Depending on cancer invasiveness, PC is treated with local resection of the glans and partial or total penectomy. This quality of life (QoL) study aimed at obtaining in-depth knowledge about patients' experiences with PC. MATERIAL AND METHODS: A literature study was carried out to identify relevant topics for a semi-structured interview. Qualitative interviews with four former PC patients were transcribed verbatim and analysed using a medical anthropological approach. The analysis focused on the ways patients frame their disease experiences and relate the physical, sexual and emotional disease impact. RESULTS: Varying degrees of amputation affected the participants' sexual capabilities. Still, three participants (aged 66-72 years) said that their partner relationships were not negatively affected by the disease. In contrast, the impact on sexual function and self-esteem had been devastating to the fourth participant (aged 44 years) who was single and worried about the disease impeding his chance of finding love in life. For all participants, having had a potentially fatal disease put the physical disease impact into perspective. CONCLUSION: PC may greatly impact the psycho-sexual QoL of PC patients, particularly at a younger age and depending on their partnership status. Disease impact appears to be related to age, overall life situation and the cancer experience. FUNDING: The study was funded by an unrestricted research grant from Sanofi Pasteur MSD. TRIAL REGISTRATION: not relevant.

Patients perceive tonsil cancer as a strike at psycho-socially "vital organs".

INTRODUCTION: Tonsil cancer (TC) is a type of head and neck cancer (HNC) that is predominantly associated with infection with human papilloma virus (HPV). In Denmark, the incidence of HPV-related HNC has increased fivefold over the past three decades. HNC more often affects men than women, and HPV-related HNC tends to affect younger age groups than other HNCs. The present study examined the long-term health-related quality of life (QoL) in patients with TC. MATERIAL AND METHODS: A medical anthropological approach was applied using individual qualitative interviews with seven former TC patients. The participants included men and women who had undergone various treatments, i.e. radiation therapy, chemotherapy and operation. Data were analyzed using a narrative methodology. RESULTS: Treatment sequelae peaked within the first three months and included severe pain in the radiated area, nausea and fatigue. Within this period, patients were unable to eat solid food and often had difficulty speaking. Half of the participants lost some of their hearing due to radiation. Even two years after treatment, most participants had persisting sequelae, mainly xerostomia, porous teeth and reduced mobility of the tongue and jaw. Fatigue and difficulties eating and communicating, in particular, had a very negative effect on the participants' psycho-social QoL. CONCLUSION: This study allowed for a deeper understanding of the negative effects of HNC on patients' QoL. These QoL effects ought to be included in future considerations of HPV vaccination of boys as well as girls. FUNDING: The study was funded by an unrestricted research grant from Sanofi Pasteur MSD. TRIAL REGISTRATION: not relevant.

Perceptions of herpes zoster and attitudes towards zoster vaccination among 50-65-year-old Danes.

INTRODUCTION: Herpes zoster (HZ or shingles) and its complication post-herpetic neuralgia (PHN) are common in persons above 50 years of age. A vaccine that decreases the incidence and morbidity associated with HZ was licensed for use in 2006 and will be marketed in Denmark as from 2013. This study aimed to explore the relations between illness perceptions of shingles and attitudes towards zoster vaccination. MATERIAL AND METHODS: Three qualitative focus group interviews were conducted with 22 patients, relatives and individuals with no personal experiences with HZ. Semi-structured interview guides were applied including questions identified in a literature study. The data were analysed using a medical anthropological approach. RESULTS: The study showed that HZ and PHN, in particular, have severe impacts on patients' quality of life (QoL) and often affect their relatives' daily lives as well. Nevertheless, people who have no experience with HZ underrate both its prevalence and its QoL impacts. Such misperceptions often result in delayed treatment and may lead to a low uptake of zoster vaccination. CONCLUSION: Individual attitudes towards zoster vaccination are closely related to subjective perceptions of HZ and views on vaccination in general. Vaccination recommendations to target groups are necessary, but individual choice is determined by knowledge about the disease, personal risk assessment and the recommendations of the general practitioner. FUNDING: The study was funded by a research grant from Sanofi Pasteur MSD. TRIAL REGISTRATION: not relevant.

Parental attitudes towards vaccinating sons with human papillomavirus vaccine.

INTRODUCTION: Male human papillomavirus (HPV) infections are frequent and lead to an increased risk of HPV-related disease in their female sexual partners. In males, HPV can cause head/neck, penile and anal cancer, as well as genital warts. In this study we assessed parental attitudes to HPV vaccination of their sons. MATERIAL AND METHODS: Telephone interviews were conducted in a random, nationally representative sample of 450 Danish parents with sons aged 12-15 years. We gave them information about the main direct benefits of male vaccination and then asked them about their views on HPV vaccination of their sons aged 12-15 years. RESULTS: HPV vaccination of sons was accepted by 80% of respondents; 45% were willing to cover the cost themselves. Parents primarily wanted to protect their sons from cancer and genital warts. 20% rejected or had doubts about HPV vaccination of their sons. Their concerns were mainly due to lack of knowledge about the vaccine, fear of side effects and lack of recommendations from health care authorities. CONCLUSION: These high acceptance rates are similar to those reported for vaccination of girls prior to its inclusion in the Danish immunisation programme. General practitioners and national health services play a crucial role in providing parents with the information required to make an informed decision about HPV vaccination of sons as well as daughters.

Long-term quality of life effects of genital warts - a follow-study.

INTRODUCTION: Genital warts (GW) is one of the most prevalent venereal diseases in Northern Europe today. Previous research has shown that while present, GW can significantly reduce patients' quality of life (QoL). This follow-up study is the first of its kind to explore the possible physical and psycho-sexual long-term effects of having previously had GW. MATERIAL AND METHODS: A qualitative research design was applied using individual interviews with six former GW patients who had been cleared for GW for at least one year. The semi-structured interview guide included questions and issues that were identified in two previous studies of the QoL of heterosexual and homosexual GW patients. The data were analysed using a discourse theoretical approach. RESULTS: This study shows that GW may have QoL effects for a long time after clearance. The participants were persistently worried about GW recurrence, about being prone to develop ano-genital cancers and about the continual, negative effects on their sex and love lives. The women in particular suffered from permanent damage to their genital mucosa due to GW laser treatment. CONCLUSION: The results of this study underline the need to disseminate knowledge about GW in order to optimize the use of preventive measures such as condoms and quadrivalent human papilloma virus vaccination. Patients with GW have a considerable need for detailed information about the disease and for being involved in the choice of their treatment. Finally, persisting worries about GW recurrence and ano-genital cancers should be addressed when communicating with former GW patients.

The quality of life of patients with genital warts: a qualitative study.

BACKGROUND: Genital warts, which are caused by infection with human papillomavirus (HPV), are one of the most common sexually transmitted diseases in Europe. Although genital warts are commonly perceived as a non-serious condition, treatment is often long, of varying effectiveness and the recurrence rate is high. Very few studies have been performed on the personal consequences of genital warts. The aim of this qualitative study, set in Denmark, was to examine the ways in which genital warts may affect patients' quality of life. METHODS: To obtain an in-depth understanding of patients' perceptions of genital warts, we used qualitative focus-group interviews with five men and five women aged between 18 and 30 years who had genital warts. The interview guide was based on a literature review that identified important issues and questions. The data were analysed using a medical anthropological approach. RESULTS: Patients' experiences were related to cultural conceptions of venereal diseases and the respective identities and sexuality of the sexes. The disease had negative psychological and social effects both for men and for women and it affected their sex and love lives, in particular. The psychological burden of the disease was increased by the uncertain timeline and the varying effectiveness of treatment. We identified a need for more patient information about the disease and its psycho-sexual aspects. CONCLUSIONS: The men and women participating in this study considered their quality of life to be significantly lowered because of genital warts. The experiences described by the participants give insights that may be valuable in treatment and counselling.The quadrivalent HPV vaccine that has now been added to the childhood vaccination programme for girls in Denmark for the prevention of cervical cancer can also prevent 90% of cases of genital warts. Our results suggest that HPV vaccination could considerably reduce the largely unacknowledged psychological and social burden associated with genital warts, in men as well as women.

Drivers and barriers to acceptance of human-papillomavirus vaccination among young women: a qualitative and quantitative study.

BACKGROUND: Human papillomavirus (HPV) is a necessary cause of cervical dysplasia and cancer, and of genital warts. Few studies have examined attitudes to HPV vaccination since the introduction of HPV vaccines. We aimed to investigate the reasons for young women's acceptance or rejection of the quadrivalent HPV vaccine after its general availability in Denmark. METHOD: A literature review assessed attitudes towards HPV vaccination and the information was used to identify relevant questions for telephone and focus group interviews with women aged 16-26 who had decided to receive or reject HPV vaccination. 435 women across Denmark were interviewed by telephone. Qualitative interviews were undertaken in focus groups with 33 women living in Odense who had completed the telephone survey. Four focus groups were set up according to age (16-20 and 21-26 years of age) and acceptance/rejection of the vaccine. RESULTS: Of 839 women initially contacted by telephone, 794 were included, 411 (49%) said they accepted vaccination but only 201 (24%) had actually received the vaccine and these latter were interviewed. 242 women said they refused vaccination of which 234 were interviewed. Women who were undecided were excluded from the study. Prevention of cervical cancer was the main driver for acceptance of the vaccine, followed by parental encouragement and financial support, personal experience of someone with cancer and recommendation by health-care professionals. The greatest barrier to vaccination was its cost. A lack of information about the benefits of vaccination for sexually active women was also an important barrier and the older participants in particular considered that they were too old to be vaccinated. Knowledge about HPV and its role in the development of cervical cancer and genital warts was poor. CONCLUSIONS: The difference between intention to be vaccinated and starting vaccination was considerable, and a large proportion of women aged 16-26 did not wish to be vaccinated. If the most important barriers to vaccination were addressed (cost and a lack of information about vaccination benefits), it is likely that the uptake of vaccination in Denmark would increase substantially.

[The quality of life of male homosexual patients with condyloma]. / Livskvalitet hos homoseksuelle maend med kondylomer.

INTRODUCTION: A recent qualitative study shows that genital warts can reduce the quality of life of heterosexual patients considerably. This follow-up study seeks to elucidate the illness perception among men who have sex with men (MSM). The aim is to examine the extent to which minority cultural conditions and factors affect the experiences of these patients. MATERIAL AND METHODS: This study was based on qualitative interviews with six Danish MSM. Along with the study among heterosexual patients, a literature review identified the important questions to be presented to the participants. RESULTS: Many MSM worry about being stigmatized in the homosexual "scene" and thereby losing their affiliation to a significant social group as well as their chances of finding sex and love. Most participants had suffered from genital warts for several years - which added to the negative psycho-sexual and social effects of the disease. These participants' fears of developing anal cancer corresponded to the concerns of female genital warts patients about cervical cancer. CONCLUSION: Ano-genital HPV infection is common among MSM. However, these men will not benefit to the same extent as heterosexual men from the herd immunity effect of HPV vaccination of girls. MSM may have particular pathological pictures as well as concerns that should be addressed when communicating with these patients and taken into account when considering HPV vaccination of boys.

[Women's experiences with cell changes]. / Kvinders erfaringer med celleforandringer.

INTRODUCTION: Each year almost 15,000 Danish women are diagnosed with cervical dysplasia. The period of medical supervision before regression or progression and a possible conical section can be protracted. The aim of this study was to examine women's experiences of the different stages of cervical dysplasia. Furthermore, it aimed to examine whether women's knowledge of human papillomavirus (HPV) as the cause of cervical dysplasia influences their illness perception. METHOD: A qualitative research design was applied using group and individual interviews with women who had been diagnosed with different stages of cervical dysplasia. The study was informed by a literature review that identified issues and questions which would be considered important by participants. RESULTS: The participants considered cervical dysplasia to be highly distressing. Their fear of cancer was not proportional to the stage of their dysplasia but was rather determined by a lack of knowledge about their condition. Information about HPV did not result in stigmatisation equivalent to other STDs as the relation to cancer remained dominant for illness perception. CONCLUSION: HPV vaccination not only makes it possible to prevent many incidences of cervical cancer but also to spare women the burden of having cervical dysplasia. Awareness of the patients' perspective can improve patient communication with women diagnosed with cervical dysplasia. This study shows that it is extremely important to address women's fears and their need for information about cervical dysplasia from the beginning of the course of the disease irrespective of the stage of their cell changes.

[Quality of life of patients with condyloma]. / Kondylompatienters livskvalitet.

INTRODUCTION: The new quadrivalent vaccine against human papillomavirus (HPV) can prevent a large number of cervical cancer cases and most cases of genital warts. Genital warts are among the most common sexually transmitted diseases in Denmark and constitute a considerable burden to the health care system as well as to the individual patient. The aim of this study is to examine the ways in which genital warts may affect the patient's quality of life. The results are important in relation to treatment as well as counselling of patients suffering from genital warts. The results are particularly relevant to decisions concerning the introduction of HPV vaccination of men as well as women. MATERIAL AND METHODS: A qualitative research design was applied using focus group interviews with male and female genital wart patients aged 18-30 years. The study was based on a literature review which identified the important issues and questions presented to the participants. RESULTS: The participants in the study have a significantly lowered quality of life due to their genital warts. The disease negatively affects them psychologically, socially and in their sex and love life in particular. The course of treatment is a burden because of the uncertain time-line and the varying effectiveness. There is much need for more information and communication about the disease and its psycho-sexual aspects. CONCLUSION: The development of a quadrivalent HPV vaccine is a milestone in the prevention of both cervical cancer and genital warts. The knowledge of genital warts is limited despite the prevalence of the disease and its severe effects on the patient's quality of life. This study indicates that HPV vaccination of both sexes would have a marked positive effect on the mental burden associated with the disease.