Adolescent and young adult childhood cancer survivors' preferences for screening and education of sexual function.

BACKGROUND: Sexual dysfunction (SD) is a common yet underrecognized concern among childhood cancer survivors (CCS). CCS who are now adolescent and young adult (AYA-CCS) identify SD as an unmet need. This study sought to explore AYA-CCS preferences on how, when, where, and by whom SD-focused communication should occur. PROCEDURE: This qualitative study utilized semi-structured interviews to explore AYA-CCS (now aged 15-24 years) experiences with, and preferences for, SD conversations. Thematic analysis methodology guided interpretation; themes were clustered into categories of who, how, when, and where SD conversations should occur. RESULTS: AYA-CCS highlighted the importance of patient-provider rapport to facilitate SD conversations, but did not have consistent preferences regarding provider type or specialty. Providers should reduce discomfort by normalizing ongoing, personalized conversations. Some AYA-CCS mentioned that notification that such a conversation is going to occur would be appreciated, and most were in favor of a screening tool to facilitate conversations. Preferences for when and where SD conversations should occur were centered on maximizing privacy. CONCLUSIONS: SD is an inadequately addressed concern in AYA-CCS, and providers must familiarize themselves with AYA-CCS preferences for discussing SD to reduce communication barriers and address this unmet need. In addition to corroborating prior studies' findings such as normalizing ongoing SD conversations, this study demonstrated novel ideas for reducing barriers, including use of a notification to prepare them prior to SD conversations, favoring the use of a screening tool, and the importance of establishing rapport prior to the SD conversations.

Validation of the Critical-Care Pain Observation Tool-Neuro in brain-injured adults in the intensive care unit: a prospective cohort study.

BACKGROUND: Pain assessment in brain-injured patients in the intensive care unit (ICU) is challenging and existing scales may not be representative of behavioral reactions expressed by this specific group. This study aimed to validate the French-Canadian and English revised versions of the Critical-Care Pain Observation Tool (CPOT-Neuro) for brain-injured ICU patients. METHODS: A prospective cohort study was conducted in three Canadian and one American sites. Patients with a traumatic or a non-traumatic brain injury were assessed with the CPOT-Neuro by trained raters (i.e., research staff and ICU nurses) before, during, and after nociceptive procedures (i.e., turning and other) and non-nociceptive procedures (i.e., non-invasive blood pressure, soft touch). Patients who were conscious and delirium-free were asked to provide their self-report of pain intensity (0-10). A first data set was completed for all participants (n = 226), and a second data set (n = 87) was obtained when a change in the level of consciousness (LOC) was observed after study enrollment. Three LOC groups were included: (a) unconscious (Glasgow Coma Scale or GCS 4-8); (b) altered LOC (GCS 9-12); and (c) conscious (GCS 13-15). RESULTS: Higher CPOT-Neuro scores were found during nociceptive procedures compared to rest and non-nociceptive procedures in both data sets (p < 0.001). CPOT-Neuro scores were not different across LOC groups. Moderate correlations between CPOT-Neuro and self-reported pain intensity scores were found at rest and during nociceptive procedures (Spearman rho > 0.40 and > 0.60, respectively). CPOT-Neuro cut-off scores ≥ 2 and ≥ 3 were found to adequately classify mild to severe self-reported pain ≥ 1 and moderate to severe self-reported pain ≥ 5, respectively. Interrater reliability of raters' CPOT-Neuro scores was supported with intraclass correlation coefficients > 0.69. CONCLUSIONS: The CPOT-Neuro was found to be valid in this multi-site sample of brain-injured ICU patients at various LOC. Implementation studies are necessary to evaluate the tool's performance in clinical practice.

Barriers to Pretransplant Immunization: A Qualitative Interview Study of Pediatric Solid Organ Transplant Stakeholders.

OBJECTIVES: To describe the experiences and beliefs of pediatric transplant stakeholders regarding factors that contribute to low pretransplant immunization rates. STUDY DESIGN: Semistructured interviews were conducted with transplant team members (hepatologists, cardiologists, nephrologists, transplant nurse coordinators, and transplant infectious diseases physicians), primary care physicians, and parents of heart, liver, and kidney transplant recipients at 3 geographically diverse large pediatric transplant centers in the US. Interviews were conducted between July 2017 and February 2020 until thematic saturation was reached within each stakeholder subgroup. Content analysis methodology was used to identify themes. RESULTS: Stakeholders participated in 30- to 60-minute interviews (16 transplant subspecialists, 3 transplant infectious diseases physicians, 11 transplant nurse coordinators, 12 primary care physicians, and 40 parents). Five central themes emerged: (1) gaps in knowledge about timing and safety of pretransplant immunizations, (2) lack of communication, coordination, and follow-up between team members regarding immunizations, (3) lack of centralized immunization records, (4) subspecialty clinic functioning as the medical home for transplant candidates but unable to provide all needed immunizations, and (5) differences between organ type in prioritization and completion of pretransplant immunization. CONCLUSIONS: There are multiple factors that contribute to low immunization rates among pediatric transplant candidates. New tools are needed to overcome these barriers and increase immunization rates in transplant candidates.

Decision-Making About Intracranial Pressure Monitor Placement in Children With Traumatic Brain Injury.

OBJECTIVES: Little is known about how clinicians make the complex decision regarding whether to place an intracranial pressure monitor in children with traumatic brain injury. The objective of this study was to identify the decisional needs of multidisciplinary clinician stakeholders. DESIGN: Semi-structured qualitative interviews with clinicians who regularly care for children with traumatic brain injury. SETTING: One U.S. level I pediatric trauma center. SUBJECTS: Twenty-eight clinicians including 17 ICU nurses, advanced practice providers, and physicians and 11 pediatric surgeons and neurosurgeons interviewed between August 2017 and February 2018. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Participants had a mean age of 43 years (range, 30-66 yr), mean experience of 10 years (range, 0-30 yr), were 46% female (13/28), and 96% white (27/28). A novel conceptual model emerged that related the difficulty of the decision about intracranial pressure monitor placement (y-axis) with the estimated outcome of the patient (x-axis). This model had a bimodal shape, with the most difficult decisions occurring for patients who 1) had a good opportunity for recovery but whose neurologic examination had not yet normalized or 2) had a low but uncertain likelihood of neurologically functional recovery. Emergent themes included gaps in medical knowledge and information available for decision-making, differences in perspective between clinical specialties, and ethical implications of decision-making about intracranial pressure monitoring. Experienced clinicians described less difficulty with decision-making overall. CONCLUSIONS: Children with severe traumatic brain injury near perceived transition points along a spectrum of potential for recovery present challenges for decision-making about intracranial pressure monitor placement. Clinician experience and specialty discipline further influence decision-making. These findings will contribute to the design of a multidisciplinary clinical decision support tool for intracranial pressure monitor placement in children with traumatic brain injury.

Understanding caregiver goals, benefits, and acceptable risks of peanut allergy therapies.

BACKGROUND: Both oral immunotherapy (OIT) and epicutaneous immunotherapy (EPIT) are emerging potential treatments for peanut allergy. Caregiver goals and expectations of these therapies are poorly defined. OBJECTIVE: To determine caregiver goals and expectations of food allergy therapy. METHODS: Twenty-two detailed, semistructured interviews of OIT and EPIT caregivers were conducted, allowing caregivers to describe their motivations for and experiences with food allergy therapy and life with a peanut allergic child. RESULTS: In this sample, caregivers of peanut allergic children enrolled in OIT or EPIT phase 3 trials expressed a primary goal for their child to develop a buffer against an unintentional peanut exposure. The perception of the buffer varied, representing a decreased reaction severity on exposure, increased time to react to allow for assessment, or increased threshold of peanut exposure tolerated. Although caregivers expressed that a buffer may increase their confidence in travel and dining outside the home, they do not anticipate this buffer would lessen their overall level of pretherapy anxiety, allergen-associated vigilance, or avoidance practices. Most of the caregivers hope the buffer will increase their and their child's perceived sense of freedom for the child's actions and social interactions, translating to quality of life improvement, while still respecting the limitations of having a severe allergy that has been partially treated. No caregiver viewed these therapies as a cure, and most viewed treatment as a supplement to their current avoidance practices. CONCLUSION: Caregivers of peanut allergic children strongly desire that OIT and EPIT result in a buffer against an unintentional reaction, although most admitted that this would not significantly change their anxiety and family's current lifestyle.

Critical Care Nursing.

These nurses care for patients with complex clinical conditions.

Do the Guidelines Apply?-A Multisite, Combined Stakeholder Qualitative Case Study to Understand Care Decisions in Bronchiolitis.

BACKGROUND: Clinical practice guidelines for bronchiolitis recommend against tests and treatments that do not improve outcomes, yet most children admitted with bronchiolitis continue to receive them. An improved understanding of factors that influence care decisions across multiple stakeholders and diverse settings is needed to develop effective strategies to de-implement (or reduce) unnecessary testing and treatment. METHODS: We explored health care provider, care team, and parent perspectives on testing and treatment in bronchiolitis to develop a combined stakeholder account of care decisions. We conducted a qualitative case study across 2 geographically distinct university affiliated children's hospitals representing a generally low and high test/treatment utilizing hospital respectively from March 2019 to May 2020. We conducted 46 semistructured interviews and 3 focus groups with a total of 74 participants. Data were analyzed using applied thematic analysis and findings were triangulated across participant group and data collection method. RESULTS: Three themes emerged around care decisions: 1) awareness and perceptions of the guidelines or evidence; 2) perceptions of expected tests or treatments, and 3) organizational culture and existing care processes. Provider and care team participants commonly described parent expectations as drivers of utilization. Conversely, parents generally reported a lack of expectations for tests/treatments and that tests/treatments did not improve their experience of care. CONCLUSIONS: This study illuminated factors associated with the differential adoption of evidence and targets for future de-implementation strategies. Importantly, incongruent with provider and care team perceptions, parents reported that they desire an evidence-based, less-is-more approach to bronchiolitis care.

Pre-implementation evaluation for an HPV vaccine provider communication intervention among primary care clinics.

OBJECTIVES: Interventions to improve health care provider communication about HPV vaccination can increase vaccine acceptance. Our objectives were to (1) identify clinics in locations with high HPV-associated cancer and low HPV-vaccination rates that would potentially benefit from dissemination of a proposed HPV Provider Communication intervention and (2) use qualitative interviews and a dissemination and implementation framework to assess readiness for change and fit of the HPV Provider Communication intervention to the context of these clinics. METHODS: Local HPV-associated cancer and HPV vaccination rates were assigned to Practice-Based Research Network clinics using data from the Colorado Central Cancer Registry, the Colorado Immunization Information System, and the American Community Survey. Staff from 38 clinics located in areas with high numbers of adolescents not up-to-date for HPV vaccine and high rates of HPV-associated cancers were recruited for qualitative interviews. Interview questions used the Promoting Action on Research Implementation in Health Services (PARIHS) conceptual framework and addressed the proposed intervention, current vaccination practices and prior quality improvement (QI) experience. RESULTS: Twenty-seven interviews were completed with clinicians, clinic managers, and other staff across 17 clinics (9 pediatric, 5 family medicine, 3 public/school-based health). Most clinics had some prior QI experience and there were few thematic differences between sites with more or less foundation for QI/immunization work. Participants were motivated to improve the health of their patients and valued both guidelines and local experience as important evidence to consider adopting an intervention. Interviewees were more interested in implementing the proposed intervention if it aligned with existing priorities and fit within clinic workflows. Facilitation needs included adequate time and external facilitation support for data tracking and analysis. CONCLUSIONS: Qualitative interviews to understand clinic context and fit of an HPV Provider Communication intervention can inform implementation in settings with the highest potential for clinical impact.

The Lived Experience of Parents' Receiving the Diagnosis of CDKL5 Deficiency Disorder for Their Child.

CDKL5 deficiency disorder (CDD), a severe developmental and epileptic encephalopathy, is being diagnosed earlier with improved access to genetic testing, but this may also have unanticipated impacts on parents' experience receiving the diagnosis. This study explores the lived experience of parents receiving a diagnosis of CDD for their child using mixed methods. Thirty-seven semistructured interviews were conducted with parents of children with a diagnosis of CDD, which were coded and analyzed to identify themes. Grief was a nearly universal theme expressed among participants. Parents of younger children discussed grief in the context of receiving the diagnosis, whereas parents of older children indicated they were at different stages along the grieving journey when they received the diagnosis. Parents with less understanding of their child's prognosis (poorer prognostic awareness) connected their grief to receiving the diagnosis as this brought a clear understanding of the prognosis. Several themes suggested what providers did well to improve the diagnostic experience for parents, much of which aligns with existing literature around how to provide serious news. Additionally, parents identified long-term benefits of having a diagnosis for their child's medical problems. Although interview data were concordant with a survey of parents' diagnostic experience from a large international cohort, most participants in this study were relatively affluent, white mothers and further research is needed to better understand if other groups of parents have a different diagnostic experience. This study gives context of parental experience that providers should be aware of when conveying new genetic diagnoses to families.