Opinions of the Dutch public on palliative sedation: a mixed-methods approach

Background

Palliative sedation is defined as deliberately lowering a patient’s consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in end-of-life care that should not be confused with euthanasia.

Aim

To inform healthcare professionals about attitudes of the general public regarding palliative sedation.

Design and setting

A cross-sectional survey among members of the Dutch general public followed by qualitative interviews.

Method

One thousand nine hundred and sixty members of the general public completed the questionnaire, which included a vignette describing palliative sedation (response rate 78%); 16 participants were interviewed.

Results

In total, 22% of the responders indicated knowing the term ‘palliative sedation’. Qualitative data showed a variety of interpretations of the term. Eighty-one per cent of the responders agreed with the provision of sedatives as described in a vignette of a patient with untreatable pain and a life expectancy of <1 week who received sedatives to alleviate his suffering. This percentage was somewhat lower for a patient with a life expectancy of <1 month (74%, P = 0.007) and comparable in the case where the physician gave sedatives with the aim of ending the patient’s life (79%, P = 0.54).

Conclusion

Most of the general public accept the use of palliative sedation at the end of life, regardless of a potential life-shortening effect. However, confusion exists about what palliative sedation represents. This should be taken into account by healthcare professionals when communicating with patients and their relatives on end-of-life care options.     

Online communication in a rehabilitation setting: Experiences of patients with chronic conditions using a web portal in Denmark

ObjectiveTo gain insight into the experiences of patients with long-term conditions enrolled in an online rehabilitation programme using a web portal.MethodsDanish outpatients were recruited from a rehabilitation department and were granted access to a web portal which included an online rehabilitation programme with key information, clinical advice, and self-management activities. After two weeks, patients were invited to participate in focus groups. A topic guide was used to explore this new online rehabilitation programme in relation to participants’ experiences.ResultsFourteen participants, ranging from 42 to 72 years old, were allocated into three focus groups. Participants mainly reported negative experiences by the following four themes: ‘patients’ experiences’, ‘technical aspects’, ‘areas for improvement’, and ‘digitalization added value’.ConclusionParticipants mainly reported negative experiences and suggested combining both face-to-face consultations with online care by user-friendly web portals. This will ensure a positive contribution from digital communication tools to rehabilitation.Practice implicationsPatients’ experiences should be considered in the design of web portals in rehabilitation which could help healthcare organizations when developing online rehabilitation programmes.     

Assessing multilevel determinants of adoption and implementation of genomic medicine: an organizational mixed-methods approach

PurposeAdoption and implementation of evidence-based genetic and genomic medicine have been slow. We describe a methodology for identifying the influence of organizational factors on adoption and implementation of these services in health-care organizations.MethodsWe illustrate a three-component, mixed-methods health services research approach, including expert panels, qualitative interviews with key informants, and quantitative surveys completed by key informants.ResultsThis research approach yielded a baseline assessment of existing genetic health-care models in the Veterans Health Administration and identified organizational barriers to and facilitators of adoption. In aggregate, the panel and key informant strategies created a communication network of relevant organizational stakeholders and a detailed foundation of organizational knowledge from which to design tools and models for implementation-level genetic/genomic translation.ConclusionExpert panel and key informant strategies can be used to create a backdrop of stakeholder involvement and baseline organizational knowledge within which to plan translation research and to inform strategic planning and policies for adoption and implementation of genetic services in health-care organizations.Genet Med17 11, 919–926.     

Perspectives and preferences regarding genomic secondary findings in underrepresented prenatal and pediatric populations: A mixed-methods approach

PurposePatients undergoing clinical exome sequencing (ES) are routinely offered the option to receive secondary findings (SF). However, little is known about the views of individuals from underrepresented minority pediatric or prenatal populations regarding SF.MethodsWe explored the preferences for receiving hypothetical categories of SF (H-SF) and reasons for accepting or declining actual SF through surveying (n = 149) and/or interviewing (n = 47) 190 families undergoing pediatric or prenatal ES.ResultsUnderrepresented minorities made up 75% of the probands. In total, 150 families (79%) accepted SF as part of their child/fetus’s ES. Most families (63%) wanted all categories of H-SF. Those who declined SF as part of ES were less likely to want H-SF across all categories. Interview findings indicate that some families did not recall their SF decision. Preparing for the future was a major motivator for accepting SF, and concerns about privacy, discrimination, and psychological effect drove decliners.ConclusionA notable subset of families (37%) did not want at least 1 category of H-SF, suggesting more hesitancy about receiving all available results than previously reported. The lack of recollection of SF decisions suggests a need for alternative communication approaches. Results highlight the importance of the inclusion of diverse populations in genomic research.     

Introducing case management for people with dementia in primary care: a mixed-methods study

Background

Case management may be a feasible solution to the problem of service fragmentation for people with dementia.

Aim

To adapt a US model of primary care-based case management for people with dementia and test it in general practice.

Design and setting

Mixed-methodology case studies of case management implementation in four general practices: one rural, one inner-city, and two urban practices. Practice nurses undertook the case manager role in the rural and inner-city practices, and were allocated one session per week for case management by their practices. A seconded social worker worked full time for the two urban practices.

Method

Participants were community-dwelling patients with dementia who were living at home with a family carer, and who were not receiving specialist care coordination. Case study methods included analysis of case loads and interviews with patients, carers, local NHS and other stakeholders, and case managers. Measures included numbers of patients with dementia and their carers, number of unmet needs identified, and actions taken to meet needs. Case manager records were compared with findings from interviews with patients and carers, and with other stakeholders.

Results

The number of eligible patients was smaller than expected. No practice achieved its recruitment target. Researchers identified more unmet needs than case managers. The practice nurse case managers reported lack of time and found research documentation burdensome. Patients and carers were positive about case management as a first point of contact with the practice, as a ‘safety net’, and for creating a one-to-one therapeutic relationship.

Conclusion

Further investigation is required before case management for people with dementia and their carers can be implemented in primary care.     

Factors affecting the long-term response to tacrolimus in renal transplant patients: Pharmacokinetic and pharmacogenetic approach

Background: The aim of our study was to determine the impact of CYP3A5*1 and CYP3A5*3 on the kinetics of tacrolimus in renal transplant recipients.Material and methods: Forty kidney recipients were selected to participate. Maintenance scheme consisted of tacrolimus, a purine inhibitor and a steroid. CYP3A5 genotyping was performed with PCR and RFLP. Pharmacokinetic model was developed with Linear Regression and General Linear Model repeated measures approach. The impact of sex, CYP3A5*1 allele, age at transplantation, hepatic and renal function on tacrolimus kinetics was examined.Results: The frequency of CYP3A5*3/*3 and CYP3A5*1/*3 genotype was 35/40 and 5/40, respectively. No CYP3A5*1/*1 was detected. CYP3A5*1 variant was associated with significant lower TAC dose adjusted concentration at 3, 6, 12 and 36 months after transplantation. Hepatic and renal function showed a significant effect on tacrolimus dose adjusted concentration 3 months after transplantation (p=0.000 and 0.028, respectively). Sex did not show a significant impact on tacrolimus kinetics. Carriers of CYP3A5*1 allele had lower predicted measures for tacrolimus dose adjusted concentration and higher predicted measures for volume of distribution.Conclusion: We proved that CYP3A5*1 carriers need higher tacrolimus dose than CYP3A5*3 homozygotes to achieve the target blood concentration.     

Guidelines for a cancer prevention smartphone application: A mixed-methods study

ObjectivesThis study sought to explore the views and experiences of healthy young adults concerning the fundamental features of a cancer prevention smartphone app that seeks behaviour change.MethodsThree focus groups were conducted with 16 healthy young adults that explored prior experiences, points of view and opinions about currently available health-related smartphone apps. Then, an online questionnaire was designed and applied to a larger sample of healthy young adults. Focus group and online questionnaire data were analysed and confronted.ResultsStudy results identified behaviour tracking, goal setting, tailored information and use of reminders as the most desired features in a cancer prevention app. Participants highlighted the importance of privacy and were reluctant to share personal health information with other users. The results also point out important dimensions to be considered for long-term use of health promotion apps related with usability and perceived usefulness. Participants didn’t consider gamification features as important dimensions for long-term use of apps.ConclusionsThis study allowed the definition of a guideline set for the development of a cancer prevention app.     

Management of patients with non-atypical and atypical endometrial hyperplasia with a levonorgestrel-releasing intrauterine system: long-term follow-up

OBJECTIVES: Levonorgestrel (LNG), delivered locally into the uterine cavity has a profound effect on the endometrium. The aim of the study was to use a LNG intrauterine system to treat non-atypical and atypical endometrial hyperplasia in women and to evaluate the long-term cure (remission) rate. METHODS: Each of the 20 women in the study, of whom eight were diagnosed with atypical hyperplasia, received a LNG-IUS, releasing 20 microg LNG/day. The study is a non-comparative study with long-term follow-up (range 14-90 months). RESULTS: All women developed a normal endometrium, except one asymptomatic woman with atypical hyperplasia who still had focal residual non-atypical hyperplasia at 3 years follow-up in the presence of a thin (< 4 mm) endometrium. CONCLUSION: Continuous intrauterine delivery of LNG appears to be a promising alternative to hysterectomy for the treatment of endometrial hyperplasia and could enhance the success rate when compared with other routes of progestagen administration as well as intrauterine progesterone delivery. The significant reduction of the PR expression observed during treatment with the LNG-IUS appears to be a marker for the strong antiproliferative effect of the hormone at a cellular level resulting in an inhibition of estrogen bioactivity and endometrial suppression.     

Participant use and communication of findings from exome sequencing: a mixed-methods study

PurposeThis study investigated how genome sequencing results affect health behaviors, affect, and communication.MethodsWe report on 29 participants who received a sequence result in the ClinSeq study, a cohort of well-educated, postreproductive volunteers. A mixed-methods design was used to explore respondents’ use, communication, and perceived utility of results.ResultsMost participants (72%) shared their result with at least one health-care provider, and 31% reported subsequent changes in the health care they received. Participants scored high on the Positive Experiences subscale and low on the Distress subscale of a modified version of the Multidimensional Impact of Cancer Risk Assessment. The majority (93%) shared their result with at least one family member. Participants described deriving personal utility from their results.ConclusionThis article is the first to describe research participants’ reactions to actionable sequencing results. Our findings suggest clinical and personal benefit from receiving sequencing results, both of which may contribute to improved health for the recipients. Given the participants’ largely positive or neutral affective responses and disclosure of their results to physicians and relatives, health-care providers should redirect concern from the potential for distress and attend to motivating patients to follow their medical recommendations.     

Communicating with older adults with long-term conditions about self-management goals: A systematic review and thematic synthesis

ObjectiveTo synthesise a body of fine-grained observational research on communication between healthcare professionals (HCPs), older adults, and carers regarding self-management goals and actions.MethodsWe conducted a systematic review, searching nine electronic databases and the grey literature. Two reviewers independently selected for inclusion following a two-stage process and studies and discrepancies were resolved through consultation with the review team.Results898 records were retrieved, and eight studies were included in the review. Aggregative thematic analysis resulted in 13 categories of communication practices across three decision-making domains: (1) initiating: actions occurring prior to the commitment point; (2) proposing: putting forward a course of action; and (3) committing and closing: committing (or not) to the course of action.ConclusionsDespite an increasing emphasis on the importance of personalised care planning and shared decision-making (SDM) to support older people’s health and wellbeing, HCPs did not consistently practice this approach and, in some cases, worked in opposition to it.Practice implicationsWe encourage HCPs to prepare older adults to engage actively with SDM and the goal setting process by employing patient-centred communication resources. These could assist with identifying different types of goals that are realistic and relevant to patients in daily life.     

p53 autoantibodies in patients with autoimmune diseases: a quantitative approach

With few exceptions, autoantibodies directed against the gene product of the tumor suppressor gene p53 are only detected in cancer patients. From 73 patients with various autoimmune diseases, we obtained 17 sera with elevated autoantibodies against the p53 protein comprising patients with SLE, Graves' disease, and immune vasculitis including Wegener's granulomatosis. The overall prevalence (23%) of p53 autoantibodies was comparable to that in various cancers; differences, however, were obvious with respect to the magnitude of antibody levels. Only 5% of seropositive colorectal cancer patients had levels within the critical range (150-180 U/ml) but nearly half (41%) of seropositive autoimmune disease patients were that low. None of the autoimmune disease patients exceeded 300 U/ml serum compared to more than 60% of seropositive colorectal cancer patients with higher levels. This remarkable difference in magnitude underlines the necessity of quantification of p53 autoantibodies over a mere qualitative determination. Patients with autoimmune diseases face an increased risk for malignancies. It still remains to be established whether p53 seropositivity in autoimmune diseases adds to the rare exceptions of p53AAb in non-malignant diseases or is indicative for a yet occult cancer.     

Lung calcification in long-term dialysed patients: a light and electronmicroscopic study

Lung calcification was detected in four out of 29 long-term dialysed patients on whom postmortem examinations were performed between 1967 and 1980. On light microscopy, calcification showed either a finely granular and linear localization along the alveolar septa, or a coarse and widespread parenchymal distribution. Histochemical studies revealed evidence of calcium, magnesium and phosphate ions in the deposits. Ultrastructural examination of the less severely involved alveolar septa showed selective deposition of calcium salts within an increased amount of elastin. The deposits consisted of electron dense roundish granules with a concentric laminar structure. They appeared either single or conglomerated in polycyclic formations, supposedly representing the progressive steps of the mineralization process, at first localized within elastin and progressively spreading outside it. The high magnesium content of the deposits suggests that the serum concentration of this ion may play an important role in visceral calcification of longterm dialysed patients.