Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives

Background

Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families.

Methods

In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data.

Results

Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers.

Conclusion

Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.

     

Identifying “ownership” through role descriptions to support implementing universal colorectal cancer tumor screening for Lynch syndrome

PurposeLynch syndrome cases are underidentified, and universal colorectal cancer tumor screening for Lynch syndrome (UTS) has been recommended. UTS implementation is challenging and few successful examples exist to date, and colorectal cancer patients and at-risk family members exhibit low uptake of genetic services. This study sought to identify the elements that could guide the choice of specialties to implement UTS through three main stages: initiating the screen, returning positive screen results, and providing follow-up.MethodsTo understand stakeholder views on the UTS process, 20 semistructured interviews were conducted with clinicians from six medical specialties crucial for implementing UTS. Data were analyzed using directed content analysis and additional thematic analysis across content categories.ResultsSeveral clinical specialties could fill necessary roles at each of the main stages of UTS implementation. Participants suggested owners based on attributes of specialty roles, clinical settings, and the routes patients take through the system.ConclusionUTS is considered possible in a range of health-care settings, with tailoring. Health systems need to choose who best fills the role’s needs based on local resources and processes. These results offer implementation guidance based on role needs, not clinical specialty, in resolving the issue of UTS “ownership.”     

Health-care providers’ perspectives on uncertainty generated by variant forms of newborn screening targets

PurposeDespite the public health successes of newborn bloodspot screening, uncertainty associated with variant forms of primary screening targets has led to discrepancies in medical management. This study explored health-care providers’ approaches to managing atypical forms of inherited metabolic diseases (IMDs) in the absence of evidence-based guidelines.MethodsSemistructured telephone interviews were conducted with metabolic specialists. 3-Methylcrotonyl CoA deficiency and variant forms of phenylketonuria, biotinidase deficiency, and fatty acid oxidation disorders were considered. Data were analyzed inductively and deductively using a novel taxonomy of uncertainty.ResultsHealth-care providers (n = 12) navigate diagnostic, prognostic, and therapeutic challenges of uncertainty while interpreting patient and family attitudes, preferences, and ideas in the care of children with these result types. Participants explained the limits of classifying mild and atypical metabolic phenotypes. Participants also described the challenge of finding balance between cautious care and overmedicalization. Developing consistent care plans and honest communication with families were perceived as effective strategies when navigating uncertainty.ConclusionProviders’ experiences suggest a need for transparent and accessible guidelines that account for challenges associated with uncertainty generated by screening. Timely consideration of this challenge is warranted with increasing emergence of genotype-first approaches to screening.     

Primary care providers’ responses to unsolicited Lynch syndrome secondary findings of varying clinical significance

PurposeHow primary care providers (PCPs) respond to genomic secondary findings (SFs) of varying clinical significance (pathogenic, uncertain significance [VUS], or benign) is unknown.MethodsWe randomized 148 American Academy of Family Physicians members to review three reports with varying significance for Lynch syndrome. Participants provided open-ended responses about the follow-up they would address and organized the SF reports and five other topics in the order they would prioritize responding to them (1 = highest priority, 6 = lowest priority).ResultsPCPs suggested referrals more often for pathogenic variants or VUS than benign variants (72% vs. 16%, p < 0.001). PCPs were also more likely to address further workup, like a colonoscopy or esophagogastroduodenoscopy, in response to pathogenic variants or VUS than benign variants (43% vs. 4%, p < 0.001). The likelihoods of addressing referrals or further workup were similar when PCPs reviewed pathogenic variants and VUS (both p > 0.46). SF reports were prioritized highest for pathogenic variants (2.7 for pathogenic variants, 3.6 for VUS, 4.3 for benign variants, all p ≤ 0.014).ConclusionResults suggest that while PCPs appreciated the differences in clinical significance, disclosure of VUS as SFs would substantially increase downstream health-care utilization.     

Prenatal healthcare providers’ Gaucher disease carrier screening practices

PurposeGaucher disease carrier screening is controversial in the medical community. The goal of this study was to explore current Gaucher disease carrier screening practices of prenatal healthcare providers.MethodsPrenatal healthcare providers were invited by email to complete an electronic-based survey.ResultsA total of 1,454 prenatal healthcare providers, including 209 genetic counselors, 450 midwives, and 795 physicians, completed the study. The majority of genetic counselors (n = 208/209, >99%), physicians (n = 415/450, 92%), and midwives (n = 634/795, 80%) currently offer Jewish ancestry disease carrier screening to couples in whom one or both partners are Jewish. Of providers who offer Jewish ancestry disease screening, the majority of genetic counselors (n = 199/208, 96%) and physicians (n = 352/415, 85%) always or sometimes offer Gaucher disease screening whereas the majority of midwives (n = 357/634, 56%) never offer Gaucher disease screening.ConclusionThis study presents the first report of Gaucher disease carrier screening practices of the prenatal healthcare providers in North America. Our results indicate that Gaucher disease carrier screening is being offered at a high rate within the scope of Jewish ancestry-based carrier screening. This may highlight a need to move away from the debate as to whether Gaucher disease carrier screening should be offered and, instead, focus on how best to provide Gaucher disease carrier screening services.Genet Med 2012:14(10):844–851     

Patients’ and providers’ perspectives on sexual health discussion in the United States: A scoping review

ObjectivesThe objective of this scoping review was to explore patients’ and providers’ perspectives on sexual health communication.MethodsA literature search was conducted in three databases, Medline (OVID), CINAHL (Ebsco), and PsycINFO (Ebsco) covering January 1, 2000—May 12, 2020. A coding sheet with a list of questions was created in Qualtrics to extract information from each article.ResultsThirty-three (33) studies were included in this review. The findings indicated that 1) the current sexual health discussion does not meet the needs of the patients; and 2) patients and providers hold uniquely different perspectives on the importance of the discussion, the responsibility of conversation initiation, and the comfort level of the discussion.ConclusionsThere remains a significant gap between providers’ perceptions and patients’ needs regarding sexual health discussion. More efforts should be made to promote the necessary sexual health communication.Practice ImplicationsProviders should initiate the discussion when necessary because it is very likely that patients welcome the discussion. Medical education and training should incorporate sexual health into its curricula to enhance health care professionals’ abilities in addressing sexual health issues. Providers should model a sense of openness and comfort in conversation to encourage patients to discuss sexual health.     

Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit?

Congenital CMV infection is a leading cause of childhood disability. Many children born with congenital CMV infection are asymptomatic or have nonspecific symptoms and therefore are typically not diagnosed. A strategy of newborn CMV screening could allow for early detection and intervention to improve clinical outcomes. Interventions might include antiviral drugs or nonpharmaceutical therapies such as speech‐language therapy or cochlear implants. Using published data from developed countries, we analyzed existing evidence of potential benefit that could result from newborn CMV screening. We first estimated the numbers of children with the most important CMV‐related disabilities (i.e. hearing loss, cognitive deficit, and vision impairment), including the age at which the disabilities occur. Then, for each of the disabilities, we examined the existing evidence for the effectiveness of various interventions. We concluded that there is good evidence of potential benefit from nonpharmaceutical interventions for children with delayed hearing loss that occurs by 9 months of age. Similarly, we concluded that there is fair evidence of potential benefit from antiviral therapy for children with hearing loss at birth and from nonpharmaceutical interventions for children with delayed hearing loss occurring between 9 and 24 months of age and for children with CMV‐related cognitive deficits. We found poor evidence of potential benefit for children with delayed hearing loss occurring after 24 months of age and for children with vision impairment. Overall, we estimated that in the United States, several thousand children with congenital CMV could benefit each year from newborn CMV screening, early detection, and interventions. Copyright © 2014 John Wiley & Sons, Ltd.     

Women’s perspectives on postpartum depression screening in pediatric settings: a preliminary study

This preliminary study is the first to identify mothers’ perspectives on barriers and facilitators to addressing postpartum depression (PPD) in pediatric settings. We conducted four 90-min focus groups with women (n?=?27) who self-identified a history of perinatal depression and/or emotional complications. Barriers reported included stigma and fear among women and lack of provider knowledge/skills regarding depression. Participants recommended non-stigmatizing approaches to depression screening/referral. Future PPD screening efforts should leverage the pediatrician–mother relationship to mitigate mothers’ fears and encourage help-seeking.     

Informed decision-making in prenatal screening for Down's syndrome: What knowledge is relevant?

Objective

To determine the content of decision-relevant knowledge needed for informed decision-making about (non-) participation in prenatal screening for Down's syndrome (DS), in order to develop a knowledge questionnaire for routine application in large-scale programme evaluations.

Methods

A generic list of content domains for knowledge about screening was extracted from the literature. Items reflecting specific knowledge domains were constructed. An expert group of professionals and pregnant women expressed whether domains and items represented decision-relevant information.

Results

All presented domains were scored as (very) important. Options when receiving an ‘increased probability for DS’ test result, the meaning of this result, the aim of the screening, and voluntary nature of the test were scored as most important. The condition being screened for, prevalence, and the screening procedure were scored as relatively less important, with a high amount of expert consensus.

Conclusion

A knowledge measure for prenatal screening for DS was developed, based on domains and items acquired by expert consensus.

Practice implications

This measure of decision-relevant knowledge can be used in routine, large-scale evaluations of the procedure for offering information about prenatal screening for DS.     

Spindle cell pancreatic endocrine tumor associated with cushing’s syndrome

A 59-yr old female presented with Cushing’s syndrome due to ectopic ACTH production. At the time of initial diagnosis an obvious source for the Cushing’s syndrome was not found and the patient was treated with bilateral adrenalectomy. Three years later she presented with hyperpigmentation and evidence of ACTH overproduction. This time a CT scan localized a mass to the tail of the pancreas and a distal pancreatectomy was performed. The mass was composed of compact plump spindle cells arranged in interlacing fascicles, was well circumscribed, and did not display angioinvasion. Although isolated punctate foci of necrosis were noted, the overall mitotic count was 1 per 10 high power fields. Immunohistochemistry showed the tumor to be positive for chromogranin, synaptophysin, and ACTH. This case highlights an unusual histological variant of pancreatic endocrine tumor (PET), namely, one composed almost exclusively of interlacing spindle-shaped cells. This raises a wide differential diagnosis and the use of immunohistochemistry is required to arrive at the correct diagnosis. ACTH-producing PET are usually aggressive lesions with metastases at the time of presentation and aggressive biological behavior. However, this case was characterized by an indolent clinical course.     

Clients’ perspectives on the quality of counseling for prenatal anomaly screening. A comparison between 2011 and 2019

ObjectiveThere have been substantial medical developments in prenatal anomaly and aneuploidy screening. However, the quality of counseling about these tests tends to lag behind. Additional quality requirements were therefore implemented in the Netherlands in 2017 to optimize this counseling. We compared clients’ counseling preferences and experiences before and after implementation of these requirements.MethodsWe used the validated 57-item QUOTE^prenatal questionnaire, to measure clients' counseling preferences and experiences before and after counseling in 20 obstetric organizations throughout the Netherlands. Clients’ preferences and experiences were compared between pregnant women and partners, nulliparous versus multiparous clients and between results of a Dutch survey in 2011 and the current one.ResultsSixty-five counselors and 649 clients (353 pregnant women and 296 partners) participated in this study. Compared to 2011, slightly more clients considered the three QUOTE^prenatal components of counseling (client-counselor relationship, health education, and decision-making support) to be either important or very important, especially decision-making support. More clients than in 2011 perceived their needs as being well addressed, with the lowest percentages for decision-making support.ConclusionQuality requirements seem to benefit the quality of counseling, as perceived by clients.Practical implicationsCounselors should consider tailoring their decision-making support more to clients’ needs.     

Airmen and health-care providers’ attitudes toward the use of genomic sequencing in the US Air Force: findings from the MilSeq Project

PurposeThe use of genomic sequencing (GS) in military settings poses unique considerations, including the potential for GS to impact service members’ careers. The MilSeq Project investigated the use of GS in clinical care of active duty Airmen in the United States Air Force (USAF).MethodsWe assessed perceived risks, benefits, and attitudes toward use of GS in the USAF among patient participants (n = 93) and health-care provider participants (HCPs) (n = 12) prior to receiving or disclosing GS results.ResultsParticipants agreed that there are health benefits associated with GS (90% patients, 75% HCPs), though more HCPs (75%) than patients (40%) agreed that there are risks (p = 0.048). The majority of both groups (67% HCPs, 77% patients) agreed that they trust the USAF with genetic information, but far fewer agreed that genetic information should be used to make decisions about deployment (5% patients, 17% HCPs) or duty assignments (3% patients, 17% HCPs). Despite their hesitancy, patients were supportive of the USAF testing for nondisease traits that could impact their duty performance. Eighty-seven percent of patients did not think their GS results would influence their career.ConclusionResults suggest favorable attitudes toward the use of GS in the USAF when not used for deployment or assignment decisions.     

GPs’ perspectives on preventive care for older people: a focus group study

Background

Preventive care traditionally aims to prevent diseases or injuries. For older people, different aims of prevention, such as maintenance of independence and wellbeing, are increasingly important.

Aim

To explore GPs’ perspectives on preventive care for older people.

Design and setting

Qualitative study comprising six focus groups with GPs in the Netherlands.

Method

The focus-group discussions with 37 GPs were analysed using the framework analysis method.

Results

Whether or not to implement preventive care for older people depends on the patient’s individual level of vitality, as perceived by the GP. For older people with a high level of vitality, GPs confine their role to standardised disease-oriented prevention on a patient’s request; when the vitality levels in older people fall, the scope of preventive care shifts from prevention of disease to prevention of functional decline. For older, vulnerable people, GPs expect most benefit from a proactive, individualised approach, enabling them to live as independently as possible. Based on these perspectives, a conceptual model for preventive care was developed, which describes GPs’ different perspectives toward older people who are vulnerable and those with high levels of vitality. It focuses on five main dimensions: aim of care (prevention of disease versus prevention of functional decline), concept of care (disease model versus functional model), initiator (older persons themselves versus GP), target groups (people with requests versus specified risk groups), and content of preventive care (mainly cardiovascular risk management versus functional decline).

Conclusion

GPs’ perspectives on preventive care are determined by their perception of the level of vitality of their older patients. Preventive care for older people with high levels of vitality may consist of a standardised disease-oriented approach; those who are vulnerable will need an individualised approach to prevent functional decline.     

Exploring Autistic adults’ perspectives on genetic testing for autism

PurposeThis study aimed to investigate the perspectives of Autistic adults regarding genetic testing for autism. Although previous studies have explored the perceptions of genetic testing for autism among a variety of different stakeholders, to our knowledge, none have explored the perceptions of Autistic adults.MethodsWe distributed a web-based survey via social media to English-speaking Autistic adults. The survey assessed individuals’ experiences with, attitudes toward, and interest in genetic testing for autism and their perceptions of its potential benefits and harms.ResultsIn total, 461 respondents completed the survey: 27% would have wanted genetic testing during childhood, 74% felt that it should only be offered if the Autistic individual is able to consent, and 49% felt that genetic testing for autism should not be done at all. Smaller proportions felt testing should be routinely offered to Autistic adults and children (35% and 26%, respectively). A total of 40% felt that genetic testing was only harmful, and 15% felt it was only beneficial.ConclusionAutistic adults have concerns about genetic testing for autism. Additional work is required to bridge the divide between the Autistic community and health care providers and families to identify if and when genetic testing should be offered.