Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study

Background Home dialysis can offer improved quality of life and economic benefits compared with facility dialysis. Yet the uptake of home dialysis remains low around the world, which may be partly due to patients' lack of knowledge and barriers to shared and informed decision-making. We aimed to describe patient and caregiver values, beliefs and experiences when considering home dialysis, to inform strategies to align policy and practice with patients' needs. Methods Semi-structured interviews with adult patients with chronic kidney disease Stage 4–5D (on dialysis <1 year) and their caregivers, recruited from three nephrology centres in New Zealand. Transcripts were analysed thematically. Results In total, 43 patients [pre-dialysis (n = 18), peritoneal dialysis (n = 13), home haemodialysis (n = 4) and facility haemodialysis (n = 9)] and 9 caregivers participated. We identified five themes related to home dialysis: lacking decisional power (complexity of information, limited exposure to home dialysis, feeling disempowered, deprived of choice, pressure to choose), sustaining relationships (maintaining cultural involvement, family influence, trusting clinicians, minimizing social isolation), reducing lifestyle disruption (sustaining employment, avoiding relocation, considering additional expenses, seeking flexible schedules, creating free time), gaining confidence in choice (guarantee of safety, depending on professional certainty, reassurance from peers, overcoming fears) and maximizing survival. Conclusions To engage and empower patients and caregivers to consider home dialysis, a stronger emphasis on the development of patient-focused educational programmes and resources is suggested. Pre-dialysis and home dialysis programmes that address health literacy and focus on cultural and social values may reduce fears and build confidence around decisions to undertake home dialysis. Financial burdens may be minimized through provision of reimbursement programmes, employment support and additional assistance for patients, particularly those residing in remote areas

Economic considerations of patients and caregivers in choosing a dialysis modality

Introduction Broader adoption of home dialysis could lead to considerable cost savings for health services. Globally, however, uptake remains low. The aim of this study was to describe patient and caregiver perspectives of the economic considerations that influence dialysis modality choice, and elicit policy-relevant recommendations. Methods Semistructured interviews with predialysis or dialysis patients and their caregivers, at three hospitals in New Zealand. Interview transcripts were analyzed thematically. Findings 43 patients and 9 caregivers (total n = 52) participated. The three themes related to economic considerations were: (i) productivity losses associated with changes in employment; (ii) the need for personal subsidization of home dialysis expenses; and (iii) the role of socio-economic disadvantage as a barrier to home dialysis. Patients weighed the flexibility of home dialysis which allowed them to remain employed, against time required for training and out-of-pocket costs. Patients saw the lack of reimbursement of home dialysis costs as unjust and suggested that reimbursement would incentivize home dialysis uptake. Social disadvantage was a barrier to home dialysis as patients’ housing was often unsuitable; they could not afford the additional treatment costs. Home hemodialysis was considered to have the highest out-of-pocket costs and was sometimes avoided for this reason. Discussion Our data suggests that economic considerations underpin the choices patients make about dialysis treatments, however these are rarely reported. To promote home dialysis, strategies to improve employment retention and housing, and to minimize out-of-pocket costs, need to be addressed directly by healthcare providers and payers

Economic considerations of patients and caregivers in choosing a dialysis modality

Introduction Broader adoption of home dialysis could lead to considerable cost savings for health services. Globally, however, uptake remains low. The aim of this study was to describe patient and caregiver perspectives of the economic considerations that influence dialysis modality choice, and elicit policy-relevant recommendations. Methods Semistructured interviews with predialysis or dialysis patients and their caregivers, at three hospitals in New Zealand. Interview transcripts were analyzed thematically. Findings 43 patients and 9 caregivers (total n = 52) participated. The three themes related to economic considerations were: (i) productivity losses associated with changes in employment; (ii) the need for personal subsidization of home dialysis expenses; and (iii) the role of socio-economic disadvantage as a barrier to home dialysis. Patients weighed the flexibility of home dialysis which allowed them to remain employed, against time required for training and out-of-pocket costs. Patients saw the lack of reimbursement of home dialysis costs as unjust and suggested that reimbursement would incentivize home dialysis uptake. Social disadvantage was a barrier to home dialysis as patients’ housing was often unsuitable; they could not afford the additional treatment costs. Home hemodialysis was considered to have the highest out-of-pocket costs and was sometimes avoided for this reason. Discussion Our data suggests that economic considerations underpin the choices patients make about dialysis treatments, however these are rarely reported. To promote home dialysis, strategies to improve employment retention and housing, and to minimize out-of-pocket costs, need to be addressed directly by healthcare providers and payers

Preterm infant outcomes following COVID-19 lockdowns in Melbourne, Australia

Peer reviewedPublisher PD

Effect of telehealth-integrated antenatal care on pregnancy outcomes in Australia : an interrupted time-series analysis

Funding Information: We thank all the staff involved in the implementation and provision of telehealth-integrated antenatal care and the women receiving care who adapted to the many changes during the pandemic.Peer reviewe

Patient and caregiver preferences for home dialysis—the home first study: a protocol for qualitative interviews and discrete choice experiments

IIntroduction The number of patients requiring dialysis continues to increase worldwide imposing a substantial social and economic burden on patients, their families and healthcare systems. Compared with facility-based dialysis, dialysis performed by the patient at home is associated with higher quality of life, freedom, survival and reduced healthcare costs. International guidelines recommend suitable patients are offered a choice of dialysis modality, including home-based dialysis. Predialysis education and offering patients choice increase home dialysis uptake, yet the factors that patients and families are willing to trade off in making decisions about dialysis location are not well understood. The Home First study will explore patients’ and caregivers’ beliefs, attitudes and preferences regarding dialysis education and decision-making with regards to dialysis options; to identify key attributes which influence their decision-making, and to quantify the relative value of these attributes. Methods and analysis This study will use a mixed-methods approach to describe patient and caregiver preferences and views about the factors that influence their choice of home or facility-based dialysis. Face-to-face, semistructured interviews will be conducted with 30–40 patients and 10–15 caregivers. Thematic analysis of interview transcripts will be conducted. Additional to providing information on the perspectives and experiences of patients and caregivers, these analyses will also inform the design of discrete choice experiments (DCEs). We will undertake DCEs with approximately 150 patients and 150 caregivers to quantify preferences for home and facility dialysis. Ethics and dissemination The Hawke's Bay, Counties Manukau, and Capital Coast District Health Board Research Ethics Committees approved the study. Findings will be presented in national/international conferences and peer-reviewed journals. Dissemination to patients will take the form of presentations, newsletters and reports to support and community groups. Reports will be disseminated to funders and participating renal units and to the New Zealand Ministry of Health

Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study

Background. Home dialysis can offer improved quality of life and economic benefits compared with facility dialysis. Yet the uptake of home dialysis remains low around the world, which may be partly due to patients’ lack of knowledge and barriers to shared and informed decision-making. We aimed to describe patient and caregiver values, beliefs and experiences when considering home dialysis, to inform strategies to align policy and practice with patients’ needs. Methods. Semi-structured interviews with adult patients with chronic kidney disease Stage 4–5D (on dialysis <1 year) and their caregivers, recruited from three nephrology centres in New Zealand. Transcripts were analysed thematically. Results. In total, 43 patients [ pre-dialysis (n = 18), peritoneal dialysis (n = 13), home haemodialysis (n = 4) and facility haemodialysis (n = 9)] and 9 caregivers participated. We identified five themes related to home dialysis: lacking decisional power (complexity of information, limited exposure to home dialysis, feeling disempowered, deprived of choice, pressure to choose), sustaining relationships (maintaining cultural involvement, family influence, trusting clinicians, minimizing social isolation), reducing lifestyle disruption (sustaining employment, avoiding relocation, considering additional expenses, seeking flexible schedules, creating free time), gaining confidence in choice (guarantee of safety, depending on professional certainty, reassurance from peers, overcoming fears) and maximizing survival. Conclusions. To engage and empower patients and caregivers to consider home dialysis, a stronger emphasis on the development of patient-focused educational programmes and resources is suggested. Pre-dialysis and home dialysis programmes that address health literacy and focus on cultural and social values may reduce fears and build confidence around decisions to undertake home dialysis. Financial burdens may be minimized through provision of reimbursement programmes, employment support and additional assistance for patients, particularly those residing in remote areas

Is Fetal Growth Restriction Associated with a More Severe Maternal Phenotype in the Setting of Early Onset Pre-Eclampsia? A Retrospective Study

BACKGROUND: Both pre-eclampsia and fetal growth restriction are thought to result from abnormal placental implantation in early pregnancy. Consistent with this shared pathophysiology, it is not uncommon to see growth restriction further confound the course of pre-eclampsia and vice versa. It has been previously suggested that superimposed growth restriction is associated with a more severe pre-eclamptic phenotype, however this has not been a consistent finding. Therefore, we set out to determine whether the presence of fetal growth restriction among women with severe early-onset pre-eclampsia was associated with more severe maternal disease compared to those without a growth-restricted fetus. METHODS AND FINDINGS: We undertook a retrospective cohort study of women presenting to a tertiary hospital with severe early-onset pre-eclampsia (<34 weeks' gestation) between 2005-2009. We collected clinical data, including severity of pre-eclampsia, maternal and neonatal outcomes. Of 176 cases of severe pre-eclampsia, 39% (n = 68) were further complicated by fetal growth restriction. However, no significant difference was seen in relation to the severity of pre-eclampsia between those with or without a growth-restricted baby. The presence of concomitant growth restriction was however associated with a significantly increased risk of stillbirth (p = 0.003) and total perinatal mortality (p = 0.02). CONCLUSIONS: The presence of fetal growth restriction among women with severe early-onset pre-eclampsia is not associated with increased severity of maternal disease. However the incidence of stillbirth and perinatal death is significantly increased in this sub-population

Cross-cultural color-odor associations

Colors and odors are associated; for instance, people typically match the smell of strawberries to the color pink or red. These associations are forms of crossmodal correspondences. Recently, there has been discussion about the extent to which these correspondences arise for structural reasons (i.e., an inherent mapping between color and odor), statistical reasons (i.e., covariance in experience), and/or semantically-mediated reasons (i.e., stemming from language). The present study probed this question by testing color-odor correspondences in 6 different cultural groups (Dutch, Netherlands-residing-Chinese, German, Malay, Malaysian-Chinese, and US residents), using the same set of 14 odors and asking participants to make congruent and incongruent color choices for each odor. We found consistent patterns in color choices for each odor within each culture, showing that participants were making non-random color-odor matches. We used representational dissimilarity analysis to probe for variations in the patterns of color-odor associations across cultures; we found that US and German participants had the most similar patterns of associations, followed by German and Malay participants. The largest group differences were between Malay and Netherlands-resident Chinese participants and between Dutch and Malaysian-Chinese participants. We conclude that culture plays a role in color-odor crossmodal associations, which likely arise, at least in part, through experience