Experience with Parent Follow-Up for Communication Outcomes after Newborn Screening Identifies Carrier Status.

OBJECTIVE: To conduct interviews with a multiyear sample of parents of infants found to have heterozygous status for sickle cell hemoglobinopathy or cystic fibrosis during newborn blood screening (NBS). STUDY DESIGN: Interviewers with clinical backgrounds telephoned parents, and followed a structured script that blended follow-up and research purposes. Recruiting followed several steps to minimize recruiting bias as much as possible for a NBS study. RESULTS: Follow-up calls were conducted with parents of 426 infant carriers of sickle cell hemoglobinopathy, and 288 parents of cystic fibrosis carriers (34.8% and 49.6% of those eligible). Among these, 27.5% and 7.8% had no recollection of being informed of NBS results. Of those who recalled a provider explanation, 8.6% and 13.0% appraised the explanation negatively. Overall, 7.4% and 13.2% were dissatisfied with the experience of learning about the NSB result. Mean anxiety levels were low but higher in the sickle cell hemoglobinopathy group (P < .001). Misconceptions that the infant might get the disease were present in 27.5% and 7.8% of parents (despite zero actual risk for disease). Several of these data were significantly predicted by NBS result, health literacy, parental age, and race/ethnicity factors. CONCLUSIONS: Patient-centered public health follow-up can be effective after NBS identifies carrier status. Psychosocial complications were uncommon, but harms were substantial enough to justify mitigation.

Vulnerable Child Syndrome and Newborn Screening Carrier Results for Cystic Fibrosis or Sickle Cell.

OBJECTIVES: To measure parental perceptions of child vulnerability, as a precursor to developing a population-scale mechanism to mitigate harm after newborn screening. STUDY DESIGN: Participants were parents of infants aged 2-5 months. Parental perceptions of child vulnerability were assessed with an adapted version of the Vulnerable Baby Scale. The scale was included in the script for a larger study of telephone follow-up for 2 newborn blood screening samples (carrier status for cystic fibrosis or sickle cell hemoglobinopathy). A comparison sample was added using a paper survey with well-baby visits to an urban/suburban clinic. RESULTS: Sample sizes consisted of 288 parents in the cystic fibrosis group, 426 in the sickle cell hemoglobinopathy group, and 79 in the clinic comparison group. Parental perceptions of child vulnerability were higher in the sickle cell group than cystic fibrosis group (P < .0001), and both were higher than the clinic comparison group (P < .0001). Parental perceptions of child vulnerability were inversely correlated with parental age (P < .002) and lower health literacy (P < .015, sickle cell hemoglobinopathy group only). CONCLUSIONS: Increased parental perceptions of child vulnerability seem to be a bona fide complication of incidental newborn blood screening findings, and healthcare professionals should be alert to the possibility. From a public health perspective, we recommend routine follow-up after incidental findings to mitigate psychosocial harm.

["I cannot kiss my wife"- An Analysis of Daily Experiences of MRSA-carriers]. / "Meine Frau kann ich nicht küssen" ­ Eine Analyse des Erlebens von MRSA-TrägerInnen.

Objectives: There are no data available on the quality of care after discharge from hospital and only limited data are available on the psychosocial effects of being an MRSA carrier within the German health system. Methods: Patients who tested positive for MRSA in the previous year were invited to take part in focus groups. Results: 2 focus groups with a total of 9 MRSA-carriers were conducted. The level of knowledge about MRSA differed between participants. In some cases, lack of information led to uncertainty and inappropriate measures to counteract MRSA. Some participants restricted their social contacts, especially to children, in order to prevent transmission. Patients experienced stigmatization in the health care system more often in inpatient care than in the outpatient sector. Only in a few cases both eradication therapy and swabs for control purposes were carried out. Conclusions: Information about the appropriate treatment and management of MRSA should be made available to patients more easily; in particular, patients need to be informed that MRSA is no threat to healthy individuals. Despite the desire of MRSA-carriers to become MRSA negative, treatment and control of MRSA seem to have low priority in the ambulant health care sector in Germany.

Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.

BACKGROUND: The importance of alerting health care systems of patients carrying multidrug-resistant bacteria (MRB) is highlighted in numerous guidelines. In the absence of electronic alert systems, notification cards are often recommended, but have rarely been evaluated. We evaluated patient experiences of receiving and using a methicillin-resistant Staphylococcus aureus (MRSA) notification card. METHODS: Two cohorts of patients given a card when identified for the first time as a carrier in 1999-2003 and 2008-2010, responded to questionnaires distributed in 2004 and 2011, respectively. The response rate in 2004 was 92 (38 females)/129 and in 2011 was 110 (55 females)/209. In addition, 63% and 49%, respectively, followed the encouragement to provide written comments to the questions. These were analysed using a qualitative method. RESULTS: The patients took responsibility not to infect others, reported high usage, and acknowledged the importance of the card to inform health care institutions about their carrier status, despite experiencing fear, disrespect, lack of knowledge, and unprofessional behaviour when presenting it to personnel. Alarmingly these stigmatizing experiences were more frequent in 2011. Professional behaviour was reported from the infectious disease clinic. A majority of the patients were unaware of how they had acquired MRSA. CONCLUSIONS: The MRSA notification card was felt to stigmatize the patient, which makes its use questionable. Other alert methods need to be developed. Most importantly, the study demonstrates the importance for these patients to meet staff educated about MRB. Thus, there is an urgent need to educate health care professionals at all levels.

Comparison between the EQ-5D-5L and the EQ-5D-3L in patients with hepatitis B.

OBJECTIVES: The purpose of the study was to compare psychometric properties of the EQ-5D-5L (5L) and the EQ-5D-3L (3L) health outcomes assessment instruments in patients with hepatitis B in China. METHODS: Patients, including hepatitis B virus carriers and those with active or inactive chronic hepatitis B, compensated cirrhosis, decompensated cirrhosis or hepatocellular carcinoma, answered a questionnaire composed of 5L, socio-demographic information, 3L, and the visual analog scale (VAS), respectively. After 1 week, a retest was conducted for inpatients. We compared acceptability, face validity, redistribution properties, convergent validity, known-group validity, discriminatory power, ceiling effect, test-retest reliability, and responsiveness of 5L and 3L. RESULTS: A total of 369 outpatients and 276 inpatients were recruited for the first interview. Of the inpatients, 183 were used in the retest. Most patients preferred 5L-3L. The 3L-5L response pairs had an inconsistency rate of 2.4%. Correlation with the VAS was greater with 5L than with 3L. Age, education, and comorbidity were associated with health-related quality of life (HRQoL). 5L discriminated more infectious conditions than 3L. In all dimensions, the Shannon's index from 5L was larger while in three dimensions the Shannon's evenness index from 5L was slightly larger. The ceiling effect was reduced in 5L. In patients with stable health states, no significant difference was detected in the weighted kappa between 5L and 3L, but intraclass correlation coefficient of 5L was higher than that of 3L. In patients with improved health states, HRQoL was seen as increased in both 5L and 3L, without significant difference. CONCLUSIONS: The EQ-5D-5L was more suitable than the EQ-5D-3L in the patients with hepatitis B in China.

Incorporating social opinion in the evolution of an epidemic spread.

The evolution of the COVID19 pandemic worldwide has shown that the most common and effective strategy to control it used worldwide involve imposing mobility constrains to the population. A determinant factor in the success of such policies is the cooperation of the population involved but this is something, at least, difficult to measure. In this manuscript, we propose a method to incorporate in epidemic models empirical data accounting for the society predisposition to cooperate with the mobility restriction policies.

Bridging the Gap between Scientific Advancement and Real-World Application: Pediatric Genetic Counseling for Common Syndromes and Single-Gene Disorders.

Screening and diagnostic testing for single-gene disorders and common syndromes in the pediatric setting frequently generate data that are challenging to interpret, and the ability to diagnose genetic conditions has outpaced the development of successful treatments or cures. Genetic testing is now integrated purposefully into a variety of primary and specialty care clinics, creating an increased requirement for genetic literacy among providers and patients, as well as a growing need to incorporate genetic counseling services into mainstream clinical practice. The practice of pediatric genetic counseling encompasses a unique combination of skills and training designed to address the evolving psychological, social, educational, medical, and reproductive concerns of patients and their families, which complements the multidisciplinary services of physicians, nurses, and other allied health professionals caring for patients with pediatric-onset genetic conditions. The potential range of genetic counseling needs in the pediatric setting transcends the diagnostic period. The sustained nature of pediatric care presents opportunities for development of trusting and longstanding professional relationships that permit the evolving genetic counseling needs of patients and families to be met. A discussion of cystic fibrosis, a common autosomal recessive single-gene disorder with an increasingly broad clinical spectrum and genotype-phenotype variability, serves as a useful case study to illustrate the current and emerging genetic counseling practices, goals, and challenges impacting patients and their families.

Limited multi-drug resistant organism related stigma in carriers exposed to isolation precautions: an exploratory quantitative questionnaire study.

BACKGROUND: Isolation precautions are applied to control the risk of transmission of multi-drug resistant organisms (MDROs). These precautions have been associated with adverse effects, such as anxiety and depression. This study aimed to quantify stigma among MDRO carriers and its association with perceived mental health and experienced quality of care. METHODS: A quantitative questionnaire study was performed in MDRO carriers exposed to ≥3 days of isolation precautions during hospitalization. Items derived from the Consumer Quality Index questionnaire (CQI) were used to assess perception of care. Stigma scores were calculated using the recently modified Berger Stigma Scale for meticillin-resistant Staphylococcus aureus (MRSA). Mental health was measured with the RAND Mental Health Inventory. The Spearman rank correlation test was used to assess the association between stigma score and RAND mental health score. FINDINGS: Of the 41 included carriers, 31 (75.6%) completed both questionnaires. The experienced quality of care was 'good' according to CQI score. Twenty-four percent reported not to have received proper explanation about MDRO carriership from healthcare workers (HCWs). MDRO-associated stigma was reported in 1/31 (3.2%). Poor mental health was self-reported in 3/31 (9.7%). There was no correlation between stigma score and RAND mental health score (Spearman correlation coefficient: 0.347). CONCLUSIONS: In this study, MDRO carriers exposed to ≥3 days of isolation precautions did not report stigma. This contrasts with a recent study that investigated MRSA-associated stigma and may be explained by contact plus airborne isolation protocols in MRSA compared with contact isolation alone in most other MDROs. Also, the psychological impact may be of a different magnitude due to as yet unknown reasons.

Health state utility values in people living with HTLV-1 and in patients with HAM/TSP: The impact of a neglected disease on the quality of life.

BACKGROUND: HTLV-1 is a neglected sexually transmitted infection despite being the cause of disabling neurological disease HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). There is no treatment for this infection and public health policies are essential to reduce its transmission. However, there are no data to support adequate cost-effective analysis in this field. The aim of this study was to obtain health state utility values for individuals with HAM/TSP and HTLV-1 asymptomatic carriers (AC). The impact of both states on quality of life (QoL) is described and compared to other diseases. METHODS: A cross-sectional observational study of 141 individuals infected with HTLV-1 (79 with HAM/TSP and 62 AC) from three Brazilian states (Rio de Janeiro, São Paulo and Alagoas) and from the United Kingdom. Participants completed a validated general health questionnaire (EQ-5D, Euroqol) from which country specific health state utility values are generated. Clinical and epidemiological data were collated. PRINCIPAL FINDINGS: Health state utility value for HAM/TSP was 0.2991. QoL for 130 reported clinical conditions ranges from 0.35 to 0.847. 12% reported their quality of life as worse as death. Low QoL was associated with severity rather than duration of disease with a moderate inverse correlation between QoL and Osame's Motor Disability Score (-0.4933) Patients who are wheelchair dependent had lowest QoL whilst those still walking unaided had the highest. AC also reported impaired QoL (0.7121) compared to general population. CONCLUSION: HTLV-1 and its associated neurological disease has a marked impact on QoL. This study provides robust data to support the development of cost-utility analysis of interventions for HTLV-1.

Evaluation in general practice of the patient's feelings about a recent hospitalization and isolation for a multidrug-resistant infection.

BACKGROUND: Isolation precautions used against multidrug-resistant (MDR) organisms are responsible for many emotional side effects. We evaluated patient's feeling after a hospitalization for an MDR infection. METHODS: We conducted a qualitative study that included 11 interviews from August 2017 to June 2018. We used phenomenology and verbatim transcription analysis was performed using NVivo software. Patients reported mainly negative feelings. Among them, 4 main themes were expressed: a desire to "be free from carriage," self-questioning regarding its nosocomial origin, the reduction of the therapeutic arsenal, and the expression of many fears especially relapse. RESULTS: For most of the participants (n = 6/11), the type of bacteria that colonized their digestive tract was precisely known including the MDR characteristics of the infection. Participants were convinced that the infection was strongly linked to the hospital and considered it as nosocomial that led to anxiety, especially regarding the origin of the infection and the absence of formal source of infection. CONCLUSIONS: MDR infections are negatively impacting patient's lived experience even after hospital discharge, partly owing to prior implementation of isolation precautions. We need to improve communication between specialists and general practitioners to reassure the patient and his surroundings regarding the anxiety resulting from such hospitalization.

Health-related quality of life of children with a positive carrier status for inherited cardiovascular diseases.

Familial hypercholesterolemia, hypertrophic cardiomyopathy, and long QT Syndrome are genetic cardiovascular conditions which may lead to sudden cardiac death at a young age. Preventive measures include lifestyle modifications, medications, and/or cardiac devices. Hence, identification of carrier children can protect them for the potentially life threatening consequences at a young age. Yet, informing children about their genetic risk status and subjecting them to treatment may have negative consequences. This preliminary study aimed to explore (1) how the health-related quality of life of carrier children compares to the quality of life of Dutch children in general; and (2) to what extent the carrier children's quality of life and their parents' perception thereof concur. Our method involved carrier children (n = 35), aged between 8 and 18 years, and their parents (n = 37) who completed a self-report questionnaire. Children's health-related quality of life was assessed with a children and parent version of the KIDSCREEN. Dutch reference data were available from a representative national sample. Our results show no statistically significant differences in scores between carrier children and the reference group. Also, no differences were found between carrier children and their parents' ratings, with the exception of the scale "psychological well being". Parents rated their child's psychological well being significantly lower. We identified no problems with the well-being of carrier children as compared to a representative sample of peers. This may offer some initial reassurance to those who have concerns about the implications of genetically testing children for one of these cardiovascular conditions. Yet, attention to possible problems in these children remains warranted.

Child and genetic variables associated with maternal adaptation to fragile X syndrome: a multidimensional analysis.

One hundred eight carrier mothers (95 premutation, 13 full mutation) of children with the full mutation fragile X syndrome completed seven scales to assess maternal stress, depressive symptoms, anger, anxiety, quality of life, hope, and optimism. A wide range of responses was found on each measure, with most mothers scoring in the non-clinical range on any individual measure. However, nearly half of the mothers scored in the clinically significant range on at least one measure and 25% on two or more measures. High stress and low quality of life were the most common domains of concern. Mothers with the full mutation generally did not differ from mothers with the premutation. CGG repeat length was not associated with responses on any of the measures completed by mothers with the premutation. Severity of the child's delay was not associated with any of the outcome measures, but child behavior problems accounted for significant variance in stress, depressive symptoms, anxiety, anger, and quality of life. Maternal adaptation appears to be a multidimensional phenomenon experienced in unique ways by each mother. Most mothers experienced positive adaptation, but a subset appear to be more vulnerable, especially those with children who have significant behavior problems. Future research needs to identify family, child, and support factors associated with maternal vulnerability and how adaptation changes over time in response to these factors.

The complexity of reproductive decision-making in asymptomatic carriers of the Huntington mutation.

The aim of this study was to describe reproductive decisions in mutation carriers after predictive testing for Huntington's disease (HD) and to identify factors that play a role in decision-making. In 1987-2004, 245 individuals received a predictive test result; 89 of them were carriers and seven received an equivocal result. Quantitative data on reproductive behaviour have been collected during all follow-up contacts. The follow-up time in this study was 1-16 years (mean: 7.1 years). Qualitative data on reproductive decision-making have been collected by the means of semistructured interviews during the 5-year follow-up study. For 46 carriers and two persons with an equivocal result, family planning was one of the motives for predictive testing. In this group, slightly more than half of the carriers (58%) had chosen to have children with prenatal diagnosis or preimplantation genetic diagnosis and about one in three (35%) decided to have no children anymore after the test. A minority (7%) was undecided or had no children for other reasons. Factors playing a role in the decision-making process were the carrier's sex, ethical issues about PD and PGD, the strength of the desire to have children, illness representations including personal experiences with HD in the family and the technological imperative. Some of these elements were in conflict and induced ambivalence towards reproductive choices. The results illustrate the complexity of the decision-making process and the necessity of in-depth counselling. Counselling should pay special attention to conflicting values and beliefs and to all kinds of pressure.

Signs of stigma and poor mental health among carriers of MRSA.

BACKGROUND: Many countries have implemented guidelines to prevent transmission of meticillin-resistant Staphylococcus aureus (MRSA). Important contextual factors of stigma can be identified in the context of MRSA. Over the past decade, concerns have been raised over a possible stigmatizing effect of these actions. AIM: To identify and quantify the occurrence of MRSA-associated stigma, and to explore its association with mental health in a country with an MRSA 'search and destroy' policy. METHODS: In 2014, a questionnaire study among 57 Dutch MRSA carriers (people that carry MRSA without signs of MRSA infection) was performed. Stigma was measured with an adjusted version of the Berger HIV Stigma Scale. Mental health was measured with the five-item RAND Mental Health Inquiry. FINDINGS: Thirty-two (56%) MRSA carriers reported stigma; of these, eight (14%) reported 'clear stigma' (Berger score >110) and 24 (42%) reported 'suggestive for stigma' (Berger score 76-110). Educational level, female sex and intensive MRSA eradication therapy were associated with higher stigma scores. Poor mental health (RAND score <60) was reported by 33% of MRSA carriers. Stigma and mental health scores were inversely correlated. Stigma was experienced most frequently in healthcare settings, and was seldom experienced in the religious community or at sport facilities. CONCLUSION: A substantial proportion of MRSA carriers reported stigma due to MRSA, and stigma was associated with poor mental health. Anticipation of MRSA-associated stigma is warranted, both in the way that care is delivered by hospital staff and in the way that care is organized within the hospital.

Hepatitis B discrimination in everyday life by rural migrant workers in Beijing.

BACKGROUND: In China, the hepatitis B virus (HBV) is a particularly challenging public health issue, with an estimated 90 million chronic hepatitis B carriers accounting for almost 7% of the population. Health-related discrimination can serve as a barrier to prevention and care for infectious diseases, such as HBV, degrade the HBV sufferers' quality of life and limit HBV patients' employment opportunities. While rural migrants account for up to 40% of the total urban population in the developed cities in China, there has been no study of the discrimination behavior of rural migrant workers toward HBV carriers. OBJECTIVE: This study evaluates the discrimination behavior of rural migrant workers toward HBV carriers and patients and proposes public policy recommendations to address discrimination and stigma. METHODS: The sample comprised 903 rural adults, aged over 18 years old, who migrated to Beijing. Using a face-to-face interview, we surveyed rural migrants' demographic characteristics, knowledge of HBV and discrimination against HBV carriers. Descriptive statistics were used to characterize the study population, HBV stigma and knowledge of HBV. Three discrimination levels (no-mild, medium and severe discrimination) were modeled using multiple logistic regression. RESULTS: Rural migrants to Beijing had a mean age of 36 years, were overwhelmingly married (91.58%), mostly with a junior high school or lower education (78.05%) and mainly engaged as temporary workers (42.52%) or self-employed (33.78%). Only 30.56% reported that they had been vaccinated against HBV. On the 0-10 discrimination scale, rural migrants rated 6.24, with only 4.54% displaying no sign of HBV-related discrimination. The high discrimination score occurred alongside a low mean knowledge of HBV (7.61 on the 1-22 ranking of HBV knowledge). Multiple logistic regression results suggest an inverse relationship between discrimination levels and HBV knowledge, especially knowledge about treatment and transmission routes. The "fear of being infected with HBV" and being HBV vaccinated was positively associated with HBV-related discrimination. Unemployed rural migrants were more likely to exhibit severe HBV-related discrimination than other occupational groups. Personal attributes, such as gender, age, marital status and education level were not associated with the level of discrimination. CONCLUSIONS: Knowledge of HBV, its transmission and treatment, and the fear of HBV infection were key features in understanding HBV discrimination by rural migrant workers. To reduce discrimination, HBV public health education campaigns need to focus on both knowledge about HBV and the fear of HBV infection. Such campaigns should target rural migrant subgroups, such as unemployed rural migrant workers.

Partners of mutation-carriers for Huntington's disease: forgotten persons?

This study focuses on psychological distress and coping strategies in partners of tested persons 5 years after predictive testing for Huntington's disease. A total of 16 carrier-couples and 17 noncarrier-couples participated in the study. Self-report questionnaires were used, assessing depression level, anxiety, intrusive and avoidance thoughts and coping strategies. Partners of carriers have as much distress as carriers, and for some distress variables even more (P<0.05-0.001). They clearly experience more psychological distress than noncarriers' partners, as expected (P<0.05-0.001). Regarding coping strategies, carriers' partners adopt more passive strategies (passive-regressive and avoiding reactions; P<0.05) and less active strategies (social support seeking and problem solving; P<0.05-0.001), compared to carriers. For both carriers and partners, the adoption of more passive strategies for coping was associated with more distress and the use of more active strategies with less distress (for carriers: P<0.05-0.001; for carriers' partners: P<0.05). The presence of children before predictive testing was an additional result-specific distress factor in carriers and their partners. In conclusion, carriers' partners have at least as much psychological distress as carriers, but partners have the tendency to draw back. The results suggest that the grief of carriers' partners may be 'disenfranchised', or not socially recognised, as if they have no right to mourn. We moreover interpreted the results referring to concepts such as anticipatory grief, psychological defences, dissonance processes and imbalanced partner relationship. Finally, we formulated some implications for genetic counselling.

Hepatitis B virus in patients undergoing hemodialysis: transmission risks and psychosocial reactions.

Thirteen patients undergoing hemodialysis who were carriers of hepatitis B virus (HBV) were screened for inappropriate reactions to HBV transmission risks and for emotional reactions to their renal and viral diseases. Four patients underreacted to HBV transmission risks through denial or misunderstanding. The nine remaining patients reported that their HBV, as compared with their renal disease, resulted in substantially greater restrictions in interpersonal relations and significantly greater feelings of not being accepted by others. In contrast, the nine patients reported that their renal disease, as compared with their HBV, resulted in substantially greater restrictions in leisure and work activities. Thirteen control patients undergoing hemodialysis but not having HBV did not differ from the patients with HBV in psychosocial reactions to renal disease. As shown in a one-month follow-up, counseling was effective in enhancing awareness of HBV transmission risks and in improving emotional adjustments to the renal and viral diseases.

[Predictive testing: presymptomatic diagnosis in neurogenetic disorders]. / Les tests présymptomatiques en neurogénétique.

Presymptomatic testing is available since 15 years for Huntington disease and it is now possible for a number of other neurogenetic disorders, mostly neurodegenerative disorders. The possibility of determining the genetic status of an at-risk person for the disorder which run in his family raises questions because of the absence of preventive and curative treatments in most instances. In addition, being carrier does not tell you when the disease will start and how it will evolve, impairing the possibilities of planning the future. A pluridisciplinary approach to predictive testing with care before, during and after the test taking into account the medical, social and psychological aspects of the disease is good practice. At the present time, only a minority of at-risk individuals request presymptomatic testing and almost 50 % do not pursue until the results. The consequences of the test may be harmful, more frequently after an unfavorable than after a favorable result. Although the motivations and the outcome in terms of request for prenatal testing after a carrier result are different in Huntington's disease and spinocerebellar ataxias, our experience underlines the benefit of pluridisciplinary care and of time for decision taking. For other disorders like familial Alzheimer's disease, or familial Creutzfeldt-Jakob disease, the experience in presymptomatic testing is still limited but the situation seems similar to Huntington's disease because of the presence of dementia. It will be interesting to study the motivations and the outcome of the tests in disorders like autosomal dominant spastic paraplegias which usually do not reduce the life expectancy. Nevertheless, the overall situation might change greatly when efficient treatments will become available in these disorders.

[Perception of a group of women about having HPV]. / Percepción de un grupo de mujeres acerca del hecho de ser portadoras del VPH.

BACKGROUND: The possibility to acquire sexually transmitted diseases generates bio-psycho-social conflicts affecting daily life of women. OBJECTIVE: To investigate the knowledge of women on the concept of being infected by the human papilloma virus (HPV) and to understand the significance they attributed to their condition as HPV carriers. MATERIAL AND METHOD: It is a qualitative study in which ten women were interviewed, after the result of a cytopathological exam suggesting HPV. Data were collected at the Center of Health School of the Universidade Estadual Paulista-UNESP-Brazil. RESULTS: The significant items were: deception and preoccupation about the cure, since they indicate that it is very deceptive to be infected with an incurable disease by a person whom they trust; the method of having sexual relations and being infected again; the necessity of care and of being optimistic to face the disease and the threat of cervix cancer originating anxiety. DISCUSSION: Orientations made by health professionals were efficacious to clarify the relationship with cancer development. It is possible to understand the necessity of assistance orientations and the opportunity to hear them, offering individualized quality care. This study also offers important elements to reinforce the educational role of health professionals, principally those referring to sexually transmitted infection and cancer, seeking prevention and early treatment with the offered information. However, there is no desire of finishing the subject regarding perception, thus there is much to discover about diseases related to human papilloma virus.