Costs of vitamin D testing and prescribing among children in primary care

Vitamin D has attracted considerable interest in recent years, with a marked increase in diagnosis of vitamin D deficiency seen among children in clinical practice in the UK. The economic implications of this change in diagnostic behaviour have not been explored. We performed a cohort study to examine longitudinal trends in healthcare expenditure arising from vitamin D testing and prescribing for children in primary care in England, using the electronic healthcare records of 722,525 children aged 0–17 years held in The Health Improvement Network database. Combined costs of vitamin D tests and prescriptions increased from £1647 per 100,000 person-years in 2008 (95% CI, £934 to £3007) to £28,913 per 100,000 person-years in 2014 (95% CI, £26,361 to £31,739). The total cost of vitamin D prescriptions and tests for children in primary care at the national level in England in 2014 was estimated to be £4.31 million (95% CI, £2.96–£6.48 million). CONCLUSION: There has been a marked increase in healthcare expenditure on vitamin D tests and prescriptions for children in primary care over the past decade. Future research should explore the drivers for this change in diagnostic behaviour and the reasons prompting investigation of vitamin D status in clinical practice

Developing an applied model for making decisions towards the end of life about care for someone with dementia

BACKGROUND: Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process. AIM: Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care. METHODS: Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018–2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia. RESULTS: Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes. CONCLUSIONS: The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers

Exploring End of Life Decision Making with People with Mild Dementia

Background: Many people with dementia do not have an advance care plan, decisions regarding their care and treatment are often left to their families. There is limited work exploring the views of people with dementia about end of life and what factors they would like their family to consider when making decisions. Aim: The aim of this study was to explore with people with mild dementia the factors they would like family caregivers to consider when making decisions on their behalf at the end of life. Methods: Ten semi-structured interviews were conducted with people with mild dementia in England. Participants were recruited through general practices, memory services and an online research register. Interviews were analysed using thematic analysis. Results: Most participants had not discussed end of life or advanced dementia with either professionals or their family. Many felt these discussions were not needed or only needed to be discussed once, however the experience of the interview often changed this view with participants acknowledging a need for such discussions. The key considerations participants wanted their family to consider when making decisions about their health and care on their behalf included: the level of awareness they have, for example are they still aware who their family are and where they are living; the need to minimise the distress on the family; include them as an individual with dementia in the decisions if possible; consult with professionals to reduce the emotional strain on family caregivers. Conclusions: Despite participants not considering discussions about end of life, they were keen to take part in this study. It is important to talk to people with dementia about end of life, highlighting the role and the decisions family caregivers have to make at the end of life may be a way to encourage discussions. These findings are contributing to the development of a decision aid to support family caregivers

Dementia and Frailty Near the End of Life Making Decisions on Behalf of Someone with Dementia at the End of Life

Background: There are a range of symptoms and challenges at the end of life which someone with dementia and their family may face. Despite attempts to increase advance care planning, many people with dementia reach the end of life without a plan. This means decisions are often left to family caregivers. Aim: The aims of this study were 1) Explore what significant decisions family caregivers need to make when caring for someone with dementia at the end of life; 2) Understand how family caregivers make these decisions. This will inform the development of a decision aid to support family caregivers at the end of life. Methods: Semi-structured interviews were conducted with family caregivers (n=16) of someone with dementia at the end of life. Participants were recruited through general practice, memory services and an online research register. Interviews were analysed using thematic analysis. Results: Six main decisions were discussed by caregivers: 1) the best place of care and when was the right time to move; 2) managing agitation; 3) managing nutrition and hydration; 4) how to ensure the person is washed and bathed; 5) how do I know if something is wrong; 6) when to stop treatment or interventions. These decisions were broken down into a series of stages, with considerations at each stage. Each decision will be presented as a diagram. Caregivers discussed balancing the impact on their life with the effect on the person with dementia. Caregivers were often managing difficult family dynamics with conflicting views, or a lack of input from some members which impacted their decision making processes. Conclusion: The findings from this study are informing the development of a decision aid to support family caregivers of people with dementia at the end of life. Caregivers often make a series of decisions which they are unaware of. This study has highlighted the unconscious decision processes and considerations caregivers make when making these decisions

Primary care consultations and costs among HIV-positive individulas in UK primary care 1995-2005: a cohort study

Objectives: To investigate the role of primary care in the management of HIV and estimate primary care-associated costs at a time of rising prevalence. Methods: Retrospective cohort study between 1995 and 2005, using data from general practices contributing data to the UK General Practice Research Database. Patterns of consultation and morbidity and associated consultation costs were analysed among all practice-registered patients for whom HIV-positive status was recorded in the general practice record. Results: 348 practices yielded 5504 person-years (py) of follow-up for known HIV-positive patients, who consult in general practice frequently (4.2 consultations/py by men, 5.2 consultations/py by women, in 2005) for a range of conditions. Consultation rates declined in the late 1990s from 5.0 and 7.3 consultations/py in 1995 in men and women, respectively, converging to rates similar to the wider population. Costs of consultation (general practitioner and nurse, combined) reflect these changes, at £100.27 for male patients and £117.08 for female patients in 2005. Approximately one in six medications prescribed in primary care for HIV-positive individuals has the potential for major interaction with antiretroviral medications. Conclusion: HIV-positive individuals known in general practice now consult on a similar scale to the wider population. Further research should be undertaken to explore how primary care can best contribute to improving the health outcomes of this group with chronic illness. Their substantial use of primary care suggests there may be potential to develop effective integrated care pathways

Trends in the Diagnosis of Vitamin D Deficiency

BACKGROUND: Vitamin D has attracted considerable interest in recent years, and health care providers have reported large increases in vitamin D test requests. However, rates of diagnosis of vitamin D deficiency in clinical practice have not been investigated. We examined trends in diagnosis of vitamin D deficiency in children in England over time, and by sociodemographic characteristics. METHODS: Cohort study using primary care records of 711 788 children aged 0 to 17 years, from the Health Improvement Network database. Incidence rates for diagnosis of vitamin D deficiency were calculated per year between 2000 and 2014. Rate ratios exploring differences by age, sex, ethnicity, and social deprivation were estimated using multivariable Poisson regression. RESULTS: The crude rate of vitamin D deficiency diagnosis increased from 3.14 per 100 000 person-years in 2000 (95% confidence interval [CI], 1.31-7.54) to 261 per 100 000 person-years in 2014 (95% CI, 241-281). After accounting for changes in demographic characteristics, a 15-fold (95% CI, 10-21) increase in diagnosis was seen between 2008 and 2014. Older age (≥10 years), nonwhite ethnicity, and social deprivation were independently associated with higher rates of diagnosis. In children aged <5 years, diagnosis rates were higher in boys than girls, whereas in children aged ≥10 they were higher in girls. CONCLUSIONS: There has been a marked increase in diagnosis of vitamin D deficiency in children over the past decade. Future research should explore the drivers for this change in diagnostic behavior and the reasons prompting investigation of vitamin D status in clinical practice

Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end-of-life

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations

Enteral tube feeding for people with severe dementia

BACKGROUND: The balance of benefits and harms associated with enteral tube feeding for people with severe dementia is not clear. An increasing number of guidelines highlight the lack of evidenced benefit and potential risks of enteral tube feeding. In some areas of the world, the use of enteral tube feeding is decreasing, and in other areas it is increasing. OBJECTIVE: To assess the effectiveness and safety of enteral tube feeding for people with severe dementia who develop problems with eating and swallowing or who have reduced food and fluid intake. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases and two trials registers on 14 April 2021. SELECTION CRITERIA: We included randomised controlled trials (RCTs), or controlled non‐randomised studies. Our population of interest was adults of any age with a diagnosis of primary degenerative dementia of any cause, with severe cognitive and functional impairment, and poor nutritional intake. Eligible studies evaluated the effectiveness and complications of enteral tube feeding via a nasogastric or gastrostomy tube, or via jejunal post‐pyloric feeding, in comparison with standard care or enhanced standard care, such as an intervention to promote oral intake. Our primary outcomes were survival time, quality of life, and pressure ulcers. DATA COLLECTION AND ANALYSIS: Three review authors screened citations and two review authors assessed full texts of potentially eligible studies against inclusion criteria. One review author extracted data, which were then checked independently by a second review author. We used the 'Risk Of Bias In Non‐randomised Studies of Interventions' (ROBINS‐I) tool to assess the risk of bias in the included studies. Risk of confounding was assessed against a pre‐agreed list of key potential confounding variables. Our primary outcomes were survival time, quality of life, and pressure ulcers. Results were not suitable for meta‐analysis, so we presented them narratively. We presented results separately for studies of percutaneous endoscopic gastrostomy (PEG) feeding, nasogastric tube feeding and studies using mixed or unspecified enteral tube feeding methods. We used GRADE methods to assess the overall certainty of the evidence related to each outcome for each study. MAIN RESULTS: We found no eligible RCTs. We included fourteen controlled, non‐randomised studies. All the included studies compared outcomes between groups of people who had been assigned to enteral tube feeding or oral feeding by prior decision of a healthcare professional. Some studies controlled for a range of confounding factors, but there were high or very high risks of bias due to confounding in all studies, and high or critical risks of selection bias in some studies. Four studies with 36,816 participants assessed the effect of PEG feeding on survival time. None found any evidence of effects on survival time (low‐certainty evidence). Three of four studies using mixed or unspecified enteral tube feeding methods in 310 participants (227 enteral tube feeding, 83 no enteral tube feeding) found them to be associated with longer survival time. The fourth study (1386 participants: 135 enteral tube feeding, 1251 no enteral tube feeding) found no evidence of an effect. The certainty of this body of evidence is very low. One study of PEG feeding (4421 participants: 1585 PEG, 2836 no enteral tube feeding) found PEG feeding increased the risk of pressure ulcers (moderate‐certainty evidence). Two of three studies reported an increase in the number of pressure ulcers in those receiving mixed or unspecified enteral tube feeding (234 participants: 88 enteral tube feeding, 146 no enteral tube feeding). The third study found no effect (very‐low certainty evidence). Two studies of nasogastric tube feeding did not report data on survival time or pressure ulcers. None of the included studies assessed quality of life. Only one study, using mixed methods of enteral tube feeding, reported on pain and comfort, finding no difference between groups. In the same study, a higher proportion of carers reported very heavy burden in the enteral tube feeding group compared to no enteral tube feeding. Two studies assessed the effect of nasogastric tube feeding on mortality (236 participants: 144 nasogastric group, 92 no enteral tube feeding). One study of 67 participants (14 nasogastric, 53 no enteral tube feeding) found nasogastric feeding was associated with increased mortality risk. The second study found no difference in mortality between groups. The certainty of this evidence is very low. Results on mortality for those using PEG or mixed methods of enteral tube feeding were mixed and the certainty of evidence was very low. There was some evidence from two studies for enteral tube feeding improving nutritional parameters, but this was very low‐certainty evidence. Five studies reported a variety of harm‐related outcomes with inconsistent results. The balance of evidence suggested increased risk of pneumonia with enteral tube feeding. None of the included studies assessed behavioural and psychological symptoms of dementia. AUTHORS' CONCLUSIONS: We found no evidence that tube feeding improves survival; improves quality of life; reduces pain; reduces mortality; decreases behavioural and psychological symptoms of dementia; leads to better nourishment; improves family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care; and no indication of harm. We found some evidence that there is a clinically significant risk of pressure ulcers from enteral tube feeding. Future research should focus on better reporting and matching of control and intervention groups, and clearly defined interventions, measuring all the outcomes referred to here

Setting directions for capacity building in primary health care: a survey of a research network

BACKGROUND: The South Australian Research Network 'SARNet' aims to build research capacity in primary health care, as part of a national government-funded strategy to integrate research into clinical practice. Internationally, research networks have been a fundamental part of research culture change, and a variety of network models exist. The 'SARNet' model uses a whole system, multidisciplinary approach to capacity building and supports individuals and groups. We undertook a descriptive baseline survey in order to understand the background and needs of SARNet members and to tailor network activities towards those needs. METHODS: A questionnaire survey, assessing members' professional background, research experience, and interest in research development and training, was sent to all members who joined the network in its first year. The visual 'research spider' tool was used to ascertain members' experience in ten core research skills, as well as their interest in developing these skills. Individuals were asked to classify themselves into one of four categories of researchers, based on previous research experience. These self-assessment categories ranged from non-participant to academic. RESULTS: Network membership was diverse. Of the 89 survey participants, 55% were general practitioners or allied health professionals. Overall, most survey respondents indicated little to moderate experience in 7 out of the 10 skills depicted in the 'research spider'. In comparison, respondents were generally highly interested in developing their research skills in all areas. Respondents' research skills correlated significantly with their self-assessed category of research participation (Spearman rank correlation, r = 0.82, p < 0.0005). Correlations between research category and publication record (Gamma association, γ = 0.53, p < 0.0005) or funding record (Gamma association, γ = 0.62, p < 0.0005) supported the internal validity of the survey instrument. CONCLUSION: Literature describing evaluation of the impact of networks is scarce. Our survey questionnaire could provide a useful instrument for evaluation of both networks and capacity building initiatives. The survey including the 'research spider' tool provided valuable information about members' needs and interest in strategies to develop their research skills. Initial needs analyses as well as on-going evaluation of network activities are important to include into the business plans of research networks, in order to ensure the network's effectiveness and support of its membership