Parental knowledge about respiratory syncytial virus (RSV) and attitudes to infant immunization with monoclonal antibodies.

BACKGROUND: Ninety percent of children are infected with respiratory syncytial virus (RSV) within their first two years of life. RSV is the main cause behind hospitalization of infants with lower respiratory tract infections. A new monoclonal antibody (mAb) immunization may prevent RSV in all infants. This cross-national study aimed to examine parental knowledge about RSV and attitudes to such RSV immunization. RESEARCH DESIGN AND METHODS: Based on a literature study, a questionnaire was designed and applied in a survey carried out in China, France, Germany, Italy, Japan, Spain, the UK, and the US. Eligible respondents were expecting their first baby or parents of children <24 months old who were open to vaccination. RESULTS: Parental acceptance of immunizations relies on perceptions of the preventable disease. In 5627 parents, only 35% reported basic or good level of knowledge about RSV. Recommendation from health care professionals and inclusion in immunization programs were crucial to their acceptance of RSV immunization. If recommended and informed about its efficacy and safety, most parents would accept RSV mAb immunization for their infants. CONCLUSIONS: Infant RSV infections are highly prevalent, yet parental awareness of RSV is poor. Country variations call for targeted communication about RSV and immunization.

Almost all children (90%) are infected with respiratory syncytial virus (RSV) before the age of two. Most cases of RSV are mild, but RSV remains the main cause behind hospitalization of infants with lung infections, such as bronchiolitis and pneumonia. A new immunization with monoclonal antibodies (mAbs) is currently being developed to prevent RSV in infants. While traditional vaccines act to mobilize a person's own production of antibodies to fight a virus, immunization with mAbs means that antibodies are given directly. We know that parents' attitudes to childhood vaccination depend on their views on childhood diseases and vaccination in general. Therefore, we wanted to examine what parents know about RSV. How widespread and severe do parents think RSV infection is? Would they like their infants to receive RSV immunization? To answer these questions, we carried out a survey in eight Western and Asian countries. More than 5000 people who were either expecting their first baby or already parents of under two-year-olds answered the questionnaire. Their responses showed that awareness of RSV was poor as two-thirds of parents had never heard of RSV or knew only the name. Once exposed to information about a hypothetical immunization against RSV disease, the immunization was considered beneficial; however, recommendation from health care professionals and inclusion in immunization programs were crucial to the parents' ultimate acceptance of RSV immunization. If recommended and well informed about its safety and efficacy, most parents would accept mAb immunization against RSV for their infants.

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review.

Recombinant prophylactic treatment (PTX) has greatly improved morbidity, mortality and health-related quality of life (HRQoL) in patients with severe haemophilia. Yet, treatment adherence appears suboptimal in adolescents and young adults with haemophilia (YWH). Young patients experience major biopsychosocial changes challenging their adherence through the transition from parental to self-care, from paediatric to adult care. In clinical practice, a systematic approach to transition is rarely used and there is little evidence on best practices. This qualitative review was based on a systematic literature search including quantitative as well as qualitative research reports to examine all relevant factors influencing adherence to PTX in YWH. We aimed to gain comprehensive insight into main drivers and barriers to adherence by exploring them in the context of YWH's disease perceptions, characteristics, HRQoL and needs. The outcome is an overview of the latest published recommendations to support treatment adherence in YWH during the transition from family-oriented care to self-care and from paediatric to adult care. The literature suggests that adherence to PTX is best supported when individual patient needs and preferences are taken into consideration when planning treatment. Preserving normality is a main priority in young patients making it crucial to support patients from early childhood in considering PTX as enabling rather than hindering a normal social and physically active life. Education in self-management should include psychosocial support of patients as well as caregivers. This requires systematic transition planning including milestone assessments and ongoing multidisciplinary support until full self-management is secured.

Quality of life and care needs in women with estrogen positive metastatic breast cancer: a qualitative study.

BACKGROUND: In recent years, the prognosis of metastatic breast cancer (MBC) has improved with more effective therapies applicable to a wider range of patients. To many patients, a MBC diagnosis thus initiates a prolonged course of illness and treatment. This qualitative study aimed to explore the long-term health-related quality of life (HRQoL) and support needs in MBC patients of all ages in the Danish context. MATERIAL AND METHODS: Eighteen MBC patients participated in five qualitative focus group interviews that were analyzed using content analysis and a constructivist approach. RESULTS: The participants described how MBC severely reduced their physical and psychosocial functioning and required a constant adaptation of their quality of life (QoL) standards in relation to their changing life situation and disease progression. Overall, they felt medically well-treated but lacked a multidisciplinary approach to care including psychological support, in particular, but also manual physiotherapy, health care coordination and social counseling. The participants called for continuity of care with the same health care professionals as this facilitated communication and flexibility in planning treatment and controls. They requested a reduction of precious time spend on treatment to enable them to focus on their most meaningful relations and activities. CONCLUSION: With the MBC diagnosis, the focus of treatment switches from disease eradication to prolonging survival, alleviating symptoms and improving QoL. To patients, MBC marks a shift in expectations from quantity to quality of life and a perpetual adaptation of their QoL standards. To sustain patients' HRQoL, it is important that along with improvements in life-prolonging treatment, comprehensive care also supports their main psycho-social needs. These patients needed support in maintaining normality and role functioning enabling them to focus on living, not merely surviving, through this prolonged disease phase.

The impact of quality of life on treatment preferences in multiple sclerosis patients.

INTRODUCTION: Multiple sclerosis (MS) is a demyelinating disorder with an unpredictable and often disabling course. MS symptoms are very heterogeneous and may lead to reduced physical, cognitive, and psychosocial functioning decreasing patients' quality of life (QoL). Today, various disease-modifying treatments (DMTs) may prevent disease progression. However, it is increasingly complex to select the right therapy for a given patient and patient preferences should be considered when making treatment decisions. This study aimed to explore the main factors affecting patients' preferences regarding MS treatment and health care. METHODS: Five qualitative focus group interviews were carried out with a total of 40 participants from across Denmark. A semistructured question guide included questions that were identified in a systematic literature study about QoL and treatment preferences in patients with MS. The participants were asked to describe their disease experiences, their health-related QoL, and reasons behind their preferences with regard to treatment and care. The data were analyzed using content analysis and a constructivist approach. RESULTS: The participants' physical, cognitive, and psychosocial QoL and functioning were reduced by disease symptoms, treatment side effects, and mode of administration. Their ability to uphold meaningful role functioning was crucial to their treatment priorities. The preeminence of anticipated efficacy, ie, the patients' hope that DMT might prevent disease deterioration in the future, was modified by their present QoL and functioning when ultimately framing their treatment preferences. There was an unmet information and support need from neurology clinics, particularly at the time of diagnosis. CONCLUSION: The participants' treatment preferences were influenced by a matrix of treatment and QoL-related factors and evolved with time and along with personal and professional changes in life. The patients preferred to receive a clear recommendation of DMT from the neurologist taking into account their individual functioning and present QoL priorities.

Parental attitudes towards male human papillomavirus vaccination: a pan-European cross-sectional survey.

BACKGROUND: Human papillomavirus (HPV) is a common sexually transmitted virus that can lead to severe diseases in both women and men. Today, HPV vaccination is offered to females only across Europe. We aimed to examine parental attitudes to HPV vaccination of their sons given brief information about HPV in both genders. METHODS: A literature study on acceptability of male HPV vaccination was carried out to inform the construction of a study questionnaire. Following up on a Danish study from 2012, this questionnaire was applied in 1837 computer assisted interviews with parents of sons in the UK, Germany, France and Italy. In each country, the parents were representative in terms of geographical dispersion, city size and age of sons in the household. The applied questionnaires took the varying vaccination policies and delivery systems into account. The data were analysed pooled and for each country using significant statistical tests (chi-2) with a 95 % confidence interval. RESULTS: Approximately ¾ of parents in the UK, Germany and Italy were in favour of HPV vaccination of their sons. In France, this applied to 49 % of respondents. Favourable parents wanted to protect their sons from disease and found gender equality important. Parents in doubt about male HPV vaccination needed more information about HPV diseases in men and male HPV vaccination; Rejecting parents were generally sceptical of vaccines and feared vaccination side-effects. Parents in countries with active vaccination policies (UK and Italy) tended to trust the importance of national vaccination programmes. Parents in countries with passive vaccination strategies (Germany and France) had greater need for information from health care professionals (HCP) and public health authorities. CONCLUSION: Given brief information about HPV in both genders, parental acceptance of HPV vaccination of sons is as high as acceptance levels for girls. All parents should be informed about HPV to make informed decisions about HPV vaccination for their children. There is a need for joint efforts from public health authorities and HCPs to provide parents with such information.

Bipolar patients' quality of life in mixed states: a preliminary qualitative study.

BACKGROUND: Approximately 20% of patients with bipolar disorder experience mixed states. Mixed states are associated with more comorbidity, poorer treatment response and prognosis, increased relapse rate, and decreased functioning. This study aimed to produce in-depth knowledge about bipolar patients' quality of life (QoL) and functioning related to mixed states. SAMPLING AND METHODS: This study used qualitative research methods. A semi-structured interview guide based on a literature study was applied in interviews with 6 remitted bipolar I patients having experienced mixed states. A medical anthropological approach was applied to analyse the data. RESULTS: Participants described mixed states as worse than other bipolar disorder states and their residual symptoms were prolonged. Mixed states affected the functioning of patients in key life domains such as self-esteem, family, love and social life, physical well-being, and working capability. CONCLUSIONS: Mixed states may severely affect the QoL and functioning of bipolar patients. Our results indicate that improving these should be a main goal of patient treatment. With an aim of adequately identifying and treating mixed states, our findings highlight the need for knowledge about this particularly severe expression of bipolar disorder. These results should be confirmed in a larger sample of patients with varying socioeconomic status.

Qualitative study of women's anxiety and information needs after a diagnosis of cervical dysplasia.

AIM: Each year almost 15,000 Danish women are diagnosed with cervical dysplasia, a precursor to cervical cancer. The period of medical follow-up, or 'watchful waiting', to monitor for regression or progression of the lesion before deciding if treatment by conisation is necessary can be long. The aim of this study was to examine the experiences of women with different stages of cervical dysplasia and to examine whether their knowledge of human papillomavirus (HPV) as the cause of cervical dysplasia influenced their perception of their disease. SUBJECT AND METHODS: We used focus group and individual interviews with 12 women diagnosed with different stages of cervical dysplasia-women who had and had not been conised. Interview guides were prepared on the basis of a literature review that identified important issues and questions for the participants. RESULTS: The participants considered cervical dysplasia to be a highly distressing condition and experienced monitoring as a worrying delay before regression of the lesions or treatment could be initiated. Women expressed a fear of cancer that was not proportional to the stage of their dysplasia, but was determined by their degree of knowledge about their condition. Unlike other sexually transmitted diseases, information about HPV did not result in stigmatisation as the perception of this disease was dominated by cancer. CONCLUSION: This study showed that it is extremely important to address women's fears, their need for information and to ensure better communication with medical practitioners about cervical dysplasia immediately after diagnosis, irrespective of the disease stage.

Quality of life of homosexual males with genital warts: a qualitative study.

BACKGROUND: A recent qualitative study in Denmark showed that genital warts (GWs) can considerably lower the quality of life of heterosexual patients. In this follow-up study, we interviewed men having sex with men (MSM) suffering from GWs to obtain an in-depth understanding of their perception of GWs and determine the extent to which minority (homosexual) cultural issues affect these patients' experiences. Qualitative interviews with six MSM were performed using a semi-structured interview guide. Questions were formulated on the basis of the earlier qualitative study in heterosexual patients with GWs along with a literature review. Data were analysed using a medical anthropological approach. FINDINGS: Many MSM worried about being stigmatised and excluded from the small homosexual 'scene', their key social group, thereby lowering their chances of finding sex and love. Most participants had suffered from GWs for several years which added to the negative psycho-sexual and social effects of the disease. Participants' fears of developing anal cancer were similar to those expressed about cervical cancer by females with GWs. CONCLUSIONS: Ano-genital human papillomavirus (HPV) infection is common and has a serious psychological and sexual impact among MSM. However, they do not benefit to the same extent as heterosexual men from the herd immunity effect of HPV vaccination of girls. The pathological profile and concerns specific to MSM should be addressed when communicating with these patients, and should be taken into account when considering HPV vaccination of boys.