Pursuing parenthood with cystic fibrosis: Reproductive health and parenting concerns in individuals with cystic fibrosis.

BACKGROUND: As life expectancy for cystic fibrosis (CF) has increased in recent decades, more individuals with CF are becoming parents. The objectives of this study were to describe the parenting and reproductive health concerns of individuals with CF and to identify the psychosocial and educational needs related to parenthood with CF. METHODS: Twenty adults with CF, including parents and non-parents, participated in one-on-one, semi-structured interviews about reproductive health and parenting. Questions pertained to reproductive health knowledge, psychosocial adaptation to CF related to fertility and parenthood, parenting concerns in the context of CF, and psychosocial care needs. We performed thematic content analysis on interview transcripts and descriptive statistical analysis on participant demographics and health variables. RESULTS: A majority of participants (ten women and ten men, of whom half were parents) described their health as "stable" and "good/fair"; median FEV 1 was 66% predicted (range, 30-105). Participants shared a range of experiences related to reproductive health discussions with CF care providers and expressed concerns about pregnancy, infertility, and adoption. Parents and non-parents expressed concerns about balancing roles as parent and patient, the impact of anticipated health decline and early mortality on children, and communication with children. Participants identified a need for earlier, improved education for potential parents and resources for parents with CF. CONCLUSIONS: Individuals with CF may not receive sufficient CF-related reproductive health education, and they have wide-ranging concerns about the intersecting roles of patient and parent. Results from this study can provide guidance for CF care providers to improve their understanding and response to the needs of individuals and families affected by CF.

Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care.

BACKGROUND: Individuals with cystic fibrosis (CF) face the challenges of managing a chronic, progressive disease. While palliative care is a standard of care in serious illnesses, there are no guidelines for its incorporation into CF care. Patients with CF, caregivers, and CF care providers may lack knowledge about palliative care and perceive barriers to integrated care. OBJECTIVES: To: 1) explore knowledge and perceptions of palliative care among patients with CF, caregivers, and CF care providers; 2) solicit opinions about incorporating palliative care into routine CF care; and 3) solicit recommendations for CF-specific palliative care education for patients and caregivers. METHODS: We conducted semi-structured interviews with adult patients with CF, parents of adolescents with CF, and CF care providers to assess knowledge and perceptions of palliative care. Discussion included suggestions for palliative care education and integration into CF care. The sample was characterized using summary statistics. Key themes were identified using qualitative content analysis. RESULTS: Ten patients with CF, ten parents, and eight CF care providers participated. Many had minimal knowledge of palliative care and endorsed the association with end of life as a barrier to palliative care, but after learning more about palliative care, thought it could be helpful, and should be introduced earlier. CONCLUSIONS: In this single center study, many patients with CF, caregivers, and providers lacked knowledge about palliative care. These findings warrant replication in a larger, multisite study to inform palliative care educational interventions as a step toward consistent integration of palliative care into routine CF care.

Associations between Patient Characteristics and a New, Early Do-Not-Attempt Resuscitation Order after Intracerebral Hemorrhage.

BACKGROUND: Decisions to limit care, including use of a do-not-resuscitate (DNR) order, are associated with increased risk of death after intracerebral hemorrhage (ICH). Given the value that patient surrogates place on the physician's perception of prognosis, understanding prognostic indicators that influence clinical judgment of outcomes is critical. OBJECTIVE: The purpose of this study was to understand the patient variables and comorbid illnesses associated with DNR orders placed on patients within 72 hours after ICH. DESIGN: Single-center, retrospective review of medical records of 198 consecutive patients with an admission diagnosis of primary supratentorial ICH between July 2007 and December 2010. SUBJECTS: Patients who did not experience a DNR order placement during their primary admission for ICH (non-DNR group) were compared to patients who received a new DNR order in the first 72 hours of admission (DNR group). MEASUREMENTS: Patient characteristics obtained include demographic data, past medical history, clinical data pertaining to the admission for the ICH, and radiographic images. Demographic, medical, and ICH injury data during the first three days of admission were collected. RESULTS: Multiple differences in patient and hospital factors were found between patients receiving a new, early DNR order and those who did not receive a DNR order after ICH. In regression modeling, Caucasian race, direct admission, and higher ICH score were associated with placement of a new DNR order early in the course of injury. CONCLUSIONS: Race, transfer procedures, and injury severity may be important factors associated with placement of new, early DNR orders in patients after ICH.

Communication with children about a parent's advanced cancer and measures of parental anxiety and depression: a cross-sectional mixed-methods study.

PURPOSE: Parents with advanced cancer are faced with difficult decision-making about communication about their illness with their children. The objectives of this study were to describe how parents communicated with their children about advanced cancer and to explore associations between communication and parental depression and anxiety. METHODS: This was a cross-sectional, mixed-methods study of 42 patients with stage IV solid tumor malignancies who had at least one child less than 18 years of age. Participants completed a semi-structured interview and the Hospital Anxiety and Depression Scale (HADS). We used multiple linear regression to evaluate the association between extent of communication and HADS Anxiety and Depression scores. Interview data were analyzed using standard qualitative content and thematic techniques and triangulated with survey data. RESULTS: Higher HADS Anxiety scores, but not HADS Depression scores, were cross-sectionally associated with greater extent of parental communication (p = 0.003), even when controlling for performance status and children's ages. In qualitative analyses, parents who acknowledged the terminal nature of their illness or experienced higher symptom burden were more likely to report that they also communicated more extensively with children. A third of parents (n = 14, 33%) described difficulty with illness-related communication with their children. CONCLUSIONS: In this pilot study, parents with advanced cancer who reported more illness-related communication with their children also reported more symptoms of general anxiety. Future interventions should address psychological distress relevant to parenting and further assess how parental communication may be linked to parental mood symptoms.

Association of IL6ST (gp130) Polymorphism with Functional Outcome Following Spontaneous Intracerebral Hemorrhage.

BACKGROUND AND PURPOSE: Genes associated with the inflammatory response and cytostructural integrity may influence recovery following a brain injury. To examine this in the setting of spontaneous intracerebral hemorrhage (ICH), selected single nucleotide polymorphisms (SNPs) were assessed for associations with patient outcome. METHODS: A cohort of 54 patients with supratentorial ICH were enrolled. Based on known involvement with neuroinflammation and cytostructural integrity, 10 preselected SNPs from 6 candidate genes were tested for associations with 6-month functional outcome (modified Rankin Scale [mRS] ≥ 3), mortality, and in-hospital deterioration (Glasgow Coma Scale decrease by >2 within 7 days of admission) following ICH. Fisher's exact test and logistic regression with adjustment for race and ICH score were performed. RESULTS: SNP rs10940495 (gp130 G/A) within the gp130 gene was the only SNP significantly associated with lower odds of an unfavorable 6-month functional outcome (odds ratio = .16 for mRS ≥ 3; 95% confidence interval, .03-.87, P = .03). Compared with major allele (A) homozygotes, minor allele (G) carriers in the IL6 signal transducer gene (gp130) locus were 84% less likely to have a poor outcome (mRS ≥ 3) at 6 months following spontaneous ICH. The SNP rs10940495 (gp130 G/A) and SNP rs3219119 (PARP-1 A/T) were associated with 6-month mortality (P = .02 and .04, respectively) only on univariate analysis. None of the SNPs examined were associated with in-hospital deterioration. CONCLUSION: In this exploratory study, SNP rs10940495 in the gp130 locus was associated with functional outcome at 6 months following spontaneous ICH. These findings, which should be validated through a larger study, suggest that inflammation plays an important role in mediating outcomes after ICH.

End-of-life parental communication priorities among bereaved fathers due to cancer.

OBJECTIVES: To elicit widowed fathers' perspectives on which domains of parenting-related communication they consider most important for dying parents to discuss at the end of life (EOL). METHODS: Two hundred seventy nine fathers widowed by cancer completed a survey about their own depression and bereavement symptoms, their wife's illness, and EOL parental communication priorities. Chi square and Fisher's exact tests and logistic regression were used to evaluate relationships between maternal EOL characteristics and fathers' responses to parenting-related EOL communication priorities. RESULTS: Fathers identified raising children in a manner that reflected maternal wishes, whether/how to talk with children about their mother's death, and how the mother wanted to be remembered as the most important EOL communication domains. Fathers who reported that their dying wives were worried about the children were more likely to prioritize raising children in ways that reflect her wishes (p=0.01). Other EOL characteristics were not associated with communication domains. CONCLUSIONS: Communicating with children and maintaining emotional connection with the deceased parent are important priorities for bereaved fathers who lost a spouse to cancer. PRACTICE IMPLICATIONS: Health care providers working with seriously ill parents may improve family outcomes by supporting communication at the EOL between co-parents.

Gender and age interact to affect early outcome after intracerebral hemorrhage.

BACKGROUND: Intracerebral hemorrhage (ICH) is a common and devastating form of cerebrovascular disease. In ICH, gender differences in outcomes remain relatively understudied but have been examined in other neurological emergencies. Further, a potential effect of age and gender on outcomes after ICH has not been explored. This study was designed to test the hypothesis that age and gender interact to modify neurological outcomes after ICH. METHODS: Adult patients admitted with spontaneous primary supratentorial ICH from July 2007 through April 2010 were assessed via retrospective analysis of an existing stroke database at Duke University. Univariate analysis of collected variables was used to compare gender and outcome. Unfavorable outcome was defined as discharge to hospice or death. Using multivariate regression, the combined effect of age and gender on outcome after ICH was analyzed. RESULTS: In this study population, women were younger (61.1+14.5 versus 65.8+17.3 years, p=0.03) and more likely to have a history of substance abuse (35% versus 8.9%, p<0.0001) compared to men. Multivariable models demonstrated that advancing age had a greater effect on predicting discharge outcome in women compared to men (p=0.02). For younger patients, female sex was protective; however, at ages greater than 60 years, female sex was a risk factor for discharge to hospice or death. CONCLUSION: While independently associated with discharge to hospice or death after ICH, the interaction effect between gender and age demonstrated significantly stronger correlation with early outcome after ICH in a single center cohort. Prospective study is required to verify these findings.

Predictors of late neurological deterioration after spontaneous intracerebral hemorrhage.

BACKGROUND: Although intracerebral hemorrhage (ICH) is a common form of cerebrovascular disease, little is known about factors leading to neurological deterioration occurring beyond 48 h after hematoma formation. The purpose of this study was to characterize the incidence, consequences, and associative factors of late neurological deterioration (LND) in patients with spontaneous ICH. METHODS: Using the Duke University Hospital Neuroscience Intensive Care Unit database from July 2007 to June 2012, a cohort of 149 consecutive patients with spontaneous supratentorial ICH met criteria for analysis. LND was defined as a decrease of two or more points in Glasgow Coma Scale score or death during the period from 48 h to 1 week after ICH symptom onset. Unfavorable outcome was defined as a modified Rankin Scale score of >2 at discharge. RESULTS: Forty-three subjects (28.9 %) developed LND. Logistic regression models revealed hematoma volume (OR = 1.017, 95 % CI 1.003-1.032, p = 0.019), intraventricular hemorrhage (OR = 2.519, 95 % CI 1.142-5.554, p = 0.022) and serum glucose on admission (OR = 2.614, 95 % CI 1.146-5.965, p = 0.022) as independent predictors of LND. After adjusting for ICH score, LND was independently associated with unfavorable outcome (OR = 4.000, 95 % CI 1.280-12.500, p = 0.017). In 65 subjects with follow-up computed tomography images, an increase in midline shift, as a surrogate for cerebral edema, was independently associated with LND (OR = 3.822, 95 % CI 1.157-12.622, p = 0.028). CONCLUSIONS: LND is a common phenomenon in patients with ICH; further, LND appears to affect outcome. Independent predictors of LND include hematoma volume, intraventricular hemorrhage, and blood glucose on admission. Progression of perihematomal edema may be one mechanism for LND.