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.

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.

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.

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.

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.

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.

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.

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.

["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.

[Work-related MRSA CC398 carrier status had serious psychosocial consequences to a farmer]. / Arbejdsbetinget MRSA-bærertilstandmedførte alvorlige psykosociale konsekvenserfor en landmand.

We describe a case of work-related methicillin-resistant Staphylococcus aureus (MRSA) CC398 carrier status in a 33-year-old male working at a pig farm. The case was complicated since his pregnant girlfriend had also MRSA CC398 carrier status. Although she remained without contact to farm animals the MRSA could not be eradicated. Conflicting messages from healthcare workers complicated the case and the psychological consequences became traumatizing to the patient and caused sick leave and psychotherapy. This case shows the importance of better information of MRSA CC398-positive patients in the future, especially for MRSA-exposed occupations.

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.

[Disclosing HIV status: the experience of PLHIV after 10 years of ARV treatment in Senegal]. / Le partage du statut sérologique des personnes vivant avec le VIH à 10 ans de traitement antirétroviral au Sénégal.

Rates of HIV status disclosure observed in Africa, especially to partners, are too low for an optimal implementation of preventive strategies. Access to antiretroviral drugs appears to have facilitated disclosure in the short term, but knowledge is insufficient about long-term practices. A study held with 185 people living with HIV (PLHIV) examined factors associated with disclosure in general and with partners over 10 years of antiretroviral treatment in Dakar. Two third of PLHIV disclosed their status to at least one person, and 56% with their partners. The main results concern factors associated with disclosure to partners (having a child, knowing one's partner status) which are different from factors associated to disclosure in general (duration of ART treatment, secondary or higher education level, being a member of an association). After ten years, 44% of people still living in couple has not disclosed (no significant differences by sex and marital regime). These results invite to regularly offer counselling to PLHIV during follow-up.

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 of the level of depression and anxiety in inactive hepatitis B carriers and chronic hepatitis B patients]. / Inaktif hepatit B tasiyicilari ve kronik hepatit B hastalarinin depresyon ve anksiyete düzeylerinin karsilastirilmasi.

OBJECTIVE: The aim of this study was to evaluate the relative contribution of chronic illness and the physical effects such illness on the mental status of chronic hepatitis B patients by comparing them to inactive hepatitis B carriers, based on Hamilton Depression Rating Scale (HDRS) and Hamilton Anxiety Rating Scale (HARS) scores. MATERIALS AND METHODS: The study included 444 participants: 249 HBsAg-positive inactive carriers (IC group) and 195 chronic hepatitis B patients (CH group) that were undergoing follow-up at Adiyaman University Research and Education Hospital, Department of Infectious Diseases Department. HBV carrier status and chronic hepatitis B were diagnosed based on European Association for the Study of Liver (EASL) guidelines. The HDRS and HARS were administered to all the participants via psychiatric interview. RESULTS: The overall mean HDRS score was 6.2 ± 8 and the overall mean HARS score was 6.0 ± 7.1. Mean HDRS score in the IC group was 7.5 ± 5.8, versus 8.8 ± 6.6 in the CH group; the difference was significant (P = 0.037). Mean HARS score were similar in both groups (P > 0.05). There wasn't a difference in anxiety or depression scores based on participants'gender or age (P > 0.05). Additionally, there wasn't a correlation between duration of illness, and family history of hepatitis or cirrhosis, or anxiety or depression scores (P > 0.05). Anxiety scores were higher among the participants with comorbidity, in both CHB and IC groups (P= 0.005 and P = 0.001, respectively). Depression scores were higher among the IC group participants with comorbidity (P= 0.003). that can occur during the treatment and follow-up of chronic hepatitis patients. The presence of comorbidity in chronic hepatitis patients increases the risk of psychiatric complications. CONCLUSION: Psychiatric comorbidity, particularly anxiety and depression, are important problems.

Presence of anxiety and depression in patients with bronchiectasis unrelated to cystic fibrosis.

INTRODUCTION: Patients with chronic bronchiectasis (BQ) may suffer from psychological disorders. The objective of this study was to assess the presence of anxiety and depression in patients from a specialised BQ Unit, using validated questionnaires. PATIENTS AND METHODS: We included patients consecutively diagnosed with BQ (unrelated to cystic fibrosis) by high resolution computed tomography in the study. Patients were clinically stable in the previous three weeks and voluntarily completed the Beck Depression Inventory, State-Trait Anxiety Inventory and St. George's Respiratory Questionnaire, after signing the informed consent. They were classified according to their scores on the psychological screening questionnaires, and their results were compared with the clinical, radiological and functional parameters and Quality of Life. RESULTS: Seventy patients were included, 48 women and 22 men, with a mean age of 64.19years. Thirty-four percent (34%) of patients showed symptoms of depression, and around 55% had scores above the 50th percentile in trait and state anxiety. The amount of sputum was associated with trait anxiety. Bacterial colonization was related to anxiety (trait and state), especially Pseudomonas aeruginosa colonization. Female patients showed a higher risk of depression. There was no relationship between the Quality of Life scores and the established classifications of anxiety and depression. CONCLUSIONS: A high percentage of patients with BQ presented anxiety (trait and state) and depression. The daily sputum production and bacterial colonization (especially with P. aeruginosa) were the variables most related to anxiety; depression was more common in women. We believe that the presence of psychological disorders should be evaluated, especially in patients with this profile.

Recognising and treatment seeking for acute bacterial meningitis in adults and children in resource-poor settings: a qualitative study.

OBJECTIVE: High mortality burden from Acute Bacterial Meningitis (ABM) in resource-poor settings has been frequently blamed on delays in treatment seeking. We explored treatment-seeking pathways from household to primary health care and referral for ABM in Malawi. DESIGN: A cross-sectional qualitative study using narrative in-depth interviews, semi-structured interviews and focus group discussions. PARTICIPANTS: Adults and children with proven and probable acute bacterial meningitis and/or their carers; adults from urban and peri-urban communities; and primary health care workers (HCW). SETTING: Queen Elizabeth Central Hospital (QECH), urban and peri-urban private and government primary health centres and communities in Blantyre District, Malawi. RESULTS: Whilst communities associated meningitis with a stiff neck, in practice responses focused on ability to recognise severe illness. Misdiagnosis of meningitis as malaria was common. Subsequent action by families depended on the extent to which normal social life was disrupted by the illness and depended on the age and social position of the sufferer. Seizures and convulsions were considered severe symptoms but were often thought to be malaria. Presumptive malaria treatment at home often delayed formal treatment seeking. Further delays in treatment seeking were caused by economic barriers and perceptions of inefficient or inadequate primary health services. CONCLUSIONS: Given the difficulties in diagnosis of meningitis where malaria is common, any intervention for ABM at primary level must focus on recognising severe illness, and encouraging action at the household, community and primary health levels. Overcoming barriers to recognition and social constraints at community level require broad community-based strategies and may provide a route to addressing poor clinical outcomes.

Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.

BACKGROUND: Extended-spectrum ß-lactamase (ESBL) is an enzyme that conveys resistance to most ß-lactam antibiotics. Infections caused by bacteria producing ESBL are often difficult to treat because of general multiresistance, and hospital care may be necessary even for nonserious infections. METHODS: The aim of this study was to increase our understanding of how infected individuals perceive their situation as "carriers" of multiresistant bacteria. A modified version of grounded theory was used to analyze 7 open interviews. RESULTS: The analysis resulted in the core category Being thrown into the scary and unknown without a map and compass. All informants thought they had received no or insufficient information about ESBL from the health care providers. Informants who had been given some information still had many unanswered thoughts and reflections. Health care staff were lacking in knowledge about ESBL and their own fears that led to the use of extreme hygiene measures, which increased the stigma for the patient. CONCLUSION: To manage their life situation, it is important that persons diagnosed as carriers of ESBL-producing bacteria receive adequate information from the attending doctor.

Factors that influence parents' experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy.

OBJECTIVE: Newborn screening (NBS) identifies genetic carriers for sickle cell hemoglobinopathy and cystic fibrosis. We aimed to identify factors during initial NBS carrier results disclosure by primary care providers (PCPs) that influenced parents' experiences and reactions. METHODS: Open-ended responses from telephone interviews with 270 parents of carriers were analyzed using mixed-methods. Conventional content analysis identified influential factors; chi-square tests analyzed relationships between factors and parent-reported reactions. RESULTS: Parents reported positive (35%) or negative (31%) reactions to results disclosure. Parents' experiences were influenced by specific factors: content messages (72%), PCP traits (47%), and aspects of the setting (30%). Including at least one of five specific content messages was associated (p<0.05) with positive parental reactions; omitting at least one of four specific content messages was associated (p<0.05) with negative parental reactions. Parents reported positive reactions when PCPs avoided jargon or were perceived as calm. Parents reported negative reactions to jargon usage and results disclosure by voicemail. CONCLUSION: Parents identified aspects of PCP communication which influenced their reactions and results disclosure experiences. PRACTICE IMPLICATIONS: Our findings suggest ways PCPs may improve communication of carrier results. PCPs should provide specific content messages and consider how their actions, characteristics, and setting can influence parental reactions.