ABSTRACT
Background: Bisphosphonates are a class of medication commonly used to treat osteoporosis. Alendronate is recommended as the first-line treatment; however, long-term adherence (both treatment compliance and persistence) is poor. Alternative bisphosphonates are available, which can be given intravenously and have been shown to improve long-term adherence. However, the most clinically effective and cost-effective alternative bisphosphonate regimen remains unclear. What is the most cost-effective bisphosphonate in clinical trials may not be the most cost-effective or acceptable to patients in everyday clinical practice. Objectives: 1. Explore patient, clinician and stakeholder views, experiences and preferences of alendronate compared to alternative bisphosphonates. 2. Update and refine the 2016 systematic review and cost-effectiveness analysis of bisphosphonates, and estimate the value of further research into their benefits. 3. Undertake stakeholder/consensus engagement to identify important research questions and further rank research priorities. Methods: The study was conducted in two stages, stages 1A and 1B in parallel, followed by stage 2: ⢠Stage 1A - we elicited patient and healthcare experiences to understand their preferences of bisphosphonates for the treatment of osteoporosis. This was undertaken by performing a systematic review and framework synthesis of qualitative studies, followed by semistructured qualitative interviews with participants. ⢠Stage 1B - we updated and expanded the existing Health Technology Assessment systematic review and clinical and cost-effectiveness model, incorporating a more comprehensive review of treatment efficacy, safety, side effects, compliance and long-term persistence. ⢠Stage 2 - we identified and ranked further research questions that need to be answered about the effectiveness and acceptability of bisphosphonates. Results: Patients and healthcare professionals identified a number of challenges in adhering to bisphosphonate medication, balancing the potential for long-term risk reduction against the work involved in adhering to oral alendronate. Intravenous zoledronate treatment was generally more acceptable, with such regimens perceived to be more straightforward to engage in, although a portion of patients taking alendronate were satisfied with their current treatment. Intravenous zoledronate was found to be the most effective, with higher adherence rates compared to the other bisphosphonates, for reducing the risk of fragility fracture. However, oral bisphosphonates are more cost-effective than intravenous zoledronate due to the high cost of zoledronate administration in hospital. The importance of including patients and healthcare professionals when setting research priorities is recognised. Important areas for research were related to patient factors influencing treatment selection and effectiveness, how to optimise long-term care and the cost-effectiveness of delivering zoledronate in an alternative, non-hospital setting. Conclusions: Intravenous zoledronate treatment was generally more acceptable to patients and found to be the most effective bisphosphonate and with greater adherence; however, the cost-effectiveness relative to oral alendronate is limited by its higher zoledronate hospital administration costs. Future work: Further research is needed to support people to make decisions influencing treatment selection, effectiveness and optimal long-term care, together with the clinical and cost-effectiveness of intravenous zoledronate administered in a non-hospital (community) setting. Limitations: Lack of clarity and limitations in the many studies included in the systematic review may have under-interpreted some of the findings relating to effects of bisphosphonates. Trial registration: This trial is registered as ISRCTN10491361. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR127550) and is published in full in Health Technology Assessment; Vol. 28, No. 21. See the NIHR Funding and Awards website for further award information.
Bisphosphonates are drug treatments commonly used to treat osteoporosis. Alendronate is the most used and is taken by mouth, weekly at a specific time of the week, which can be challenging. Less than one in four people continue this treatment beyond 2 years. Alternative bisphosphonates are available, which vary in frequency and how they are administered. The most acceptable and best value-for-money regimen is unclear. Our aim was to determine how effective alternative bisphosphonates are compared to alendronate at preventing fractures and whether reduction in fracture risk was achieved at a reasonable financial cost, but acceptable to patients. The study was conducted in two stages, stages 1A and 1B in parallel, followed by stage 2: Stage 1A: a review of the published evidence on patients' and doctors' views, experiences and preferences regarding different bisphosphonate treatment regimens, followed by interviews with patients and healthcare professionals. Stage 1B: an update of an existing study on how effective bisphosphonates are in preventing fragility fractures caused by osteoporosis and whether they are good value for money. Stage 2: identification of questions that need to be answered about the effectiveness and acceptability of bisphosphonate treatments. Taking bisphosphonate medication often involves quite a lot of effort by patients, particularly when taking alendronate tablets. A yearly infusion of zoledronate treatment was more acceptable, easier to engage with and the most effective treatment compared to alendronate. However, the cost of administering zoledronate in hospital made alendronate better value for money. Bisphosphonates are effective in reducing the risk of fracture, but 'continuing with treatment', particularly alendronate tablets, remains a challenge. A yearly infusion of zoledronate offers an acceptable and effective treatment, but further research is needed to support patients and healthcare professionals in making decisions about the various treatments, benefits and cost savings of administering zoledronate outside of hospital and in the community.
Subject(s)
Alendronate , Bone Density Conservation Agents , Cost-Benefit Analysis , Diphosphonates , Osteoporotic Fractures , Humans , Diphosphonates/therapeutic use , Diphosphonates/administration & dosage , Bone Density Conservation Agents/therapeutic use , Bone Density Conservation Agents/administration & dosage , Osteoporotic Fractures/prevention & control , Alendronate/therapeutic use , Alendronate/administration & dosage , Alendronate/economics , Female , Osteoporosis/drug therapy , Medication Adherence , Male , Aged , Quality-Adjusted Life Years , Technology Assessment, Biomedical , Middle Aged , Zoledronic Acid/therapeutic use , Zoledronic Acid/administration & dosage , Qualitative ResearchABSTRACT
BACKGROUND: The onset of disability in bathing is particularly important for older adults as it can be rapidly followed by disability in other daily activities; this may represent a judicious time point for intervention in order to improve health, well-being and associated quality of life. An important environmental and preventative intervention is housing adaptation, but there are often lengthy waiting times for statutory provision. In this randomised controlled trial (RCT), we aim to evaluate the effectiveness and cost-effectiveness of bathing adaptations compared to no adaptations and to explore the factors associated with routine and expedited implementation of bathing adaptations. METHODS: BATH-OUT-2 is a multicentre, two-arm, parallel-group RCT. Adults aged 60 and over who are referred to their local authority for an accessible level access shower will be randomised, using pairwise randomisation, 1:1, to receive either an expedited provision of an accessible shower via the local authority or a usual care control waiting list. Participants will be followed up for a maximum of 12 months and will receive up to four follow-ups in this duration. The primary outcome will be the participant's physical well-being, assessed by the Physical Component Summary score of the Short Form-36 (SF-36), 4 weeks after the intervention group receives the accessible shower. The secondary outcomes include the Mental Component Summary score of the SF-36, self-reported falls, health and social care resource use, health-related quality of life (EQ-5D-5L), social care-related quality of life (Adult Social Care Outcomes Toolkit (ASCOT)), fear of falling (Short Falls Efficacy Scale), independence in bathing (Barthel Index bathing question), independence in daily activities (Barthel Index) and perceived difficulty in bathing (0-100 scale). A mixed-methods process evaluation will comprise interviews with stakeholders and a survey of local authorities with social care responsibilities in England. DISCUSSION: The BATH-OUT-2 trial is designed so that the findings will inform future decisions regarding the provision of bathing adaptations for older adults. This trial has the potential to highlight, and then reduce, health inequalities associated with waiting times for bathing adaptations and to influence policies for older adults. TRIAL REGISTRATION: ISRCTN Registry ISRCTN48563324. Prospectively registered on 09/04/2021.
Subject(s)
Fear , Group Processes , Humans , Middle Aged , Aged , Cost-Benefit Analysis , England , Policy , Randomized Controlled Trials as TopicABSTRACT
BACKGROUND: Bisphosphonate medications, including alendronate, ibandronate and risedronate administered orally and zoledronate, administered intravenously, are commonly prescribed for the treatment of osteoporosis based on evidence that, correctly taken, bisphosphonates can improve bone strength and lead to a reduction in the risk of fragility fractures. However, it is currently unclear how decisions to select between bisphosphonate regimens, including intravenous regimen, are made in practice and how clinicians support patients with different treatments. METHODS: This was an interpretivist qualitative study. 23 semi-structured telephone interviews were conducted with a sample of general practitioners (GPs), secondary care clinicians, specialist experts as well as those providing and leading novel treatments including participants from a community intravenous (IV) zoledronate service. Data analysis was undertaken through a process of iterative categorisation. RESULTS: The results report clinicians varying experiences of making treatment choices, as well as wider aspects of osteoporosis care. Secondary care and specialist clinicians conveyed some confidence in making treatment choices including on selecting IV treatment. This was aided by access to diagnostic testing and medication expertise. In contrast GPs reported a number of challenges in prescribing bisphosphonate medications for osteoporosis and uncertainty about treatment choice. Results also highlight how administering IV zoledronate was seen as an opportunity to engage in broader care practices. CONCLUSION: Approaches to making treatment decisions and supporting patients when prescribing bisphosphonates for osteoporosis vary in practice. This study points to the need to co-ordinate osteoporosis treatment and care across different care providers.
Subject(s)
Bone Density Conservation Agents , Osteoporosis, Postmenopausal , Osteoporosis , Humans , Female , Zoledronic Acid/therapeutic use , Osteoporosis/drug therapy , Osteoporosis/chemically induced , Diphosphonates/adverse effects , Ibandronic Acid/therapeutic use , Alendronate/therapeutic use , Osteoporosis, Postmenopausal/drug therapyABSTRACT
PURPOSE: Worldwide, many people who would benefit from osteoporosis drugs are not offered or receiving them, resulting in an osteoporosis care gap. Adherence with bisphosphonates is particularly low. This study aimed to identify stakeholder research priorities relating to bisphosphonate treatment regimens for prevention of osteoporotic fractures. METHODS: A three-step approach based on the James Lind Alliance methodology for identification and prioritisation of research questions was used. Research uncertainties were gathered from a large programme of related research studies about bisphosphonate regimens and from recent published international clinical guidelines. Clinical and public stakeholders refined the list of uncertainties into research questions. The third step prioritised the questions using a modified nominal group technique. RESULTS: In total, 34 draft uncertainties were finalised into 33 research questions by stakeholders. The top 10 includes questions relating to which people should be offered intravenous bisphosphonates first line (1); optimal duration of treatment (2); the role of bone turnover markers in treatment breaks (3); support patient need for medicine optimisation (4); support primary care practitioner need regarding bisphosphonates (5); comparing zoledronate given in community vs hospital settings (6); ensuring quality standards are met (7); the long-term model of care (8); best bisphosphonate for people aged under 50 (9); and supporting patient decision-making about bisphosphonates (10). CONCLUSION: This study reports, for the first time, topics of importance to stakeholders in the research of bisphosphonate osteoporosis treatment regimens. These findings have implications for research into implementation to address the care gap and education of healthcare professionals. Using James Lind Alliance methodology, this study reports prioritised topics of importance to stakeholders in the research of bisphosphonate treatment in osteoporosis. The priorities address how to better implement guidelines to address the care gap, understanding patient factors influencing treatment selection and effectiveness, and how to optimise long-term care.
Subject(s)
Biomedical Research , Osteoporosis , Humans , Aged , Diphosphonates/therapeutic use , Osteoporosis/drug therapy , Patient Selection , United KingdomABSTRACT
BACKGROUND: Osteoporosis is common in older adults leading to fragility fractures at enormous individual and economic cost. Improving long-term adherence with bisphosphonate treatments reduces fracture risk, but adherence rates for first-line oral bisphosphonate alendronate remains low. Although alternative treatment regimens, including annual intravenous infusions are available, patient acceptability remains unclear. Therefore, understanding patients' acceptability and engagement in different bisphosphonate regimens is important to ensure optimal treatment benefits. METHODS: Semi-structured interviews were conducted with 78 patients with a mean age of 69.9 years, who had taken or received bisphosphonates for osteoporosis within the last 24 months. Data analysis included iterative categorisation and used the theoretical framework of acceptability (TFA) to compare the acceptability of treatments regimens. RESULTS: Treatment acceptability and engagement were influenced by the extent to which patients understood the prescribed treatment, and evidence of the treatment working. Acceptability and engagement were compromised when treatment was perceived as burdensome, personal costs were incurred, and patients' values were incompatible with the regimen. The balancing of these factors contributed to patients' ability to cope with the treatment and their emotional responses. Intravenous treatment was generally perceived as easier to understand, more effective, less burdensome with fewer opportunity costs, and a preferable regimen compared with oral bisphosphonates. CONCLUSIONS: Annual intravenous zoledronate bisphosphonate treatment was generally more acceptable to patients, perceived as more straightforward to engage in, although a small portion of patients on oral bisphosphonates were satisfied with treatment. Further research is needed to identify how acceptability and engagement can be optimised.
Subject(s)
Bone Density Conservation Agents , Fractures, Bone , Osteoporosis, Postmenopausal , Osteoporosis , Female , Humans , Aged , Bone Density Conservation Agents/adverse effects , Osteoporosis, Postmenopausal/chemically induced , Osteoporosis/drug therapy , Diphosphonates/adverse effects , Alendronate/adverse effectsABSTRACT
BACKGROUND: Guidance for choosing face-to-face vs remote consultations (RCs) encourages clinicians to consider patient preferences, however, little is known about acceptability of, and preferences for RCs, particularly amongst patients with musculoskeletal conditions. This study aimed to explore the acceptability of, and preferences for, RC among patients with osteoporosis and rheumatoid arthritis. METHODS: Three UK qualitative studies, exploring patient experiences of accessing and receiving healthcare, undertaken during the pandemic, with people with osteoporosis and rheumatoid arthritis. Study team members agreed a consistent approach to conduct rapid deductive analysis using the Theoretical Framework of Acceptability (TFA) on transcripts from each data set relating to RC, facilitated by group meetings to discuss interpretations. Findings from the three studies were pooled. RESULTS: Findings from 1 focus group and 64 interviews with 35 people were included in the analysis. Participants' attitudes to RC, views on fairness (ethicality) and sense-making (intervention coherence) varied according to their needs within the consultation and views of the pandemic. Some participants valued the reduced burden associated with RC, while others highly valued non-verbal communication and physical examination associated with face-to-face consults (opportunity costs). Some participants described low confidence (self-efficacy) in being able to communicate in RCs and others perceived RCs as ineffective, in part due to suboptimal communication. CONCLUSIONS: Acceptability of, and preferences for RC appear to be influenced by societal, healthcare provider and personal factors and in this study, were not condition-dependant. Remote care by default has the potential to exacerbate health inequalities and needs nuanced implementation.
Subject(s)
COVID-19 , COVID-19/epidemiology , Focus Groups , Humans , Patient Preference , Qualitative Research , Referral and ConsultationABSTRACT
PURPOSE: An ageing workforce means that our understanding of return to work following total hip and knee replacement is of increasing importance. The purpose of this qualitative study was to explore the views and experiences of clinicians in treating working patients undergoing total hip or knee replacement. MATERIALS AND METHODS: We conducted semi-structured interviews in primary and secondary National Health Service care using framework methodology. A total of 40 interviews were conducted. Participants included 12 hospital-based Allied Health Professionals and nurses, 12 orthopedic surgeons, and 16 General Practitioners. Data were analyzed thematically. RESULTS: A key theme concerned participants' perceptions and experiences around the process and practice of listing working patients for total hip or knee replacement. Four sub-themes were identified; the perceived likelihood of listing employed patients for surgery, expectations and outcomes of surgery, the impact of work issues, and referral procedures and waiting lists. CONCLUSIONS: Decisions around listing working patients for total hip and knee replacement are complex and difficult. Clinicians need to consistently consider patients' work issues, and to be supported in this by appropriate commissioning and service delivery decisions. Further research is indicated to better understand the work-related expectations and anticipated outcomes of both patients and clinicians, and the optimum timing of surgery to maintain and improve patients' work performance.Implications for rehabilitationClinicians need to consistently consider patients' work issues, and current evidence, in their consultations and decisions regarding total hip and knee replacement.Clinical practice should reflect the growing proportion of working patients undergoing total hip and knee replacement, and routinely measure work outcomes.Changes are required at commissioning and service levels to support clinicians in changing their practice with this patient population.
Subject(s)
Arthroplasty, Replacement, Hip , Arthroplasty, Replacement, Knee , Humans , Qualitative Research , Referral and Consultation , Return to Work , State MedicineABSTRACT
BACKGROUND: Hip and knee replacements are regularly carried out for patients who work. There is little evidence about these patients' needs and the factors influencing their return to work. There is a paucity of guidance to help patients return to work after surgery and a need for structured occupational advice to enable them to return to work safely and effectively. OBJECTIVES: To develop an occupational advice intervention to support early recovery to usual activities including work that is tailored to the requirements of patients undergoing hip or knee replacements. To test the acceptability, practicality and feasibility of this intervention within current care frameworks. DESIGN: An intervention mapping approach was used to develop the intervention. The research methods employed were rapid evidence synthesis, qualitative interviews with patients and stakeholders, a prospective cohort study, a survey of clinical practice and a modified Delphi consensus process. The developed intervention was implemented and assessed during the final feasibility stage of the intervention mapping process. SETTING: Orthopaedic departments in NHS secondary care. PARTICIPANTS: Patients who were in work and intending to return to work following primary elective hip or knee replacement surgery, health-care professionals and employers. INTERVENTIONS: Occupational advice intervention. MAIN OUTCOME MEASURES: Development of an occupational advice intervention, fidelity of the developed intervention when delivered in a clinical setting, patient and clinician perspectives of the intervention and preliminary assessments of intervention effectiveness and cost. RESULTS: A cohort study (154 patients), 110 stakeholder interviews, a survey of practice (152 respondents) and evidence synthesis provided the necessary information to develop the intervention. The intervention included information resources, a personalised return-to-work plan and co-ordination from the health-care team to support the delivery of 13 patient and 20 staff performance objectives. To support delivery, a range of tools (e.g. occupational checklists, patient workbooks and employer information), roles (e.g. return-to-work co-ordinator) and training resources were created. Feasibility was assessed for 21 of the 26 patients recruited from three NHS trusts. Adherence to the defined performance objectives was 75% for patient performance objectives and 74% for staff performance objectives. The intervention was generally well received, although the short time frame available for implementation and concurrent research evaluation led to some confusion among patients and those delivering the intervention regarding its purpose and the roles and responsibilities of key staff. LIMITATIONS: Implementation and uptake of the intervention was not standardised and was limited by the study time frame. Evaluation of the intervention involved a small number of patients, which limited the ability to assess it. CONCLUSIONS: The developed occupational advice intervention supports best practice. Evaluation demonstrated good rates of adherence against defined performance objectives. However, a number of operational and implementation issues require further attention. FUTURE WORK: The intervention warrants a randomised controlled trial to assess its clinical effectiveness and cost-effectiveness to improve rates and timing of sustained return to work after surgery. This research should include the development of a robust implementation strategy to ensure that adoption is sustained. STUDY REGISTRATION: Current Controlled Trials ISRCTN27426982 and PROSPERO CRD42016045235. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 45. See the NIHR Journals Library website for further project information.
Hip and knee replacements are regularly carried out for patients who work. There is a lack of evidence about these patients' needs and how they return to work. Guidance to enable return to work after surgery is limited. There is, therefore, a need for structured occupational advice to help these patients. The aim of this project was to develop a multidisciplinary occupational advice intervention for this patient population and assess if it could be delivered. The study also aimed to make recommendations about its further assessment in a clinical trial. The study combined different methods of research (quantitative and qualitative) to identify the population likely to benefit, their current care, and the outcomes important to patients and health-care professionals. All of the information gathered was mapped through a framework (intervention mapping), which included a consensus process with stakeholders to develop the intervention. The intervention delivery was assessed for a small number of patients across orthopaedic departments, employer organisations and primary care networks. The study involved 154 patients, 110 stakeholders (general practitioners, surgeons, employers and health professionals/nurses) and a survey of current care (152 respondents) to develop the intervention. The intervention included information resources, a personalised return-to-work plan and co-ordination from the health-care team to support the delivery of 33 patient and staff performance objectives. To support delivery, a range of tools (e.g. occupational checklists, patient workbooks and employer information), roles (e.g. return-to-work co-ordinator) and training resources were created. The intervention was assessed in 26 patients and staff, and showed high rates of adherence to the defined performance objectives. The overall results demonstrated that the occupational advice intervention developed for hip and knee replacement patients is deliverable. The intervention warrants further research to assess its clinical effectiveness and cost-effectiveness as a tool to improve rates and timing of sustained return to work after surgery.
Subject(s)
Arthroplasty , Counseling , Lower Extremity/surgery , Return to Work/psychology , Aged , Feasibility Studies , Female , Humans , Interviews as Topic , Male , Middle Aged , Prospective Studies , Qualitative Research , Surveys and QuestionnairesABSTRACT
BACKGROUND: Prior research has investigated various strategies to improve health, wellbeing and the job-related outcomes of nurses. However, the scope of this evidence is not clear and the types of intervention most likely to have positive outcomes are unknown. OBJECTIVE: To provide an overview and synthesis of the effectiveness of interventions conducted with the goal of improving health, wellbeing and the job-related outcomes of nurses. METHODS: A systematic database search was conducted from January 2000 to December 2018, with pre-defined criteria (Cochrane Central Register of Controlled Trials; MEDLINE and PubMed; EMBASE; CINAHL; PsycINFO; and BioMed Central). In total, 136 intervention studies with a total sample of 16,129 participants (range 9-3381) were included and evaluated. Data extraction, quality assessment and risk of bias analyses were performed. RESULTS: Studies included randomised controlled trials (RCTs; n = 52, 38%), randomised crossover design studies (n = 2, 1.5%) and non-randomised pre-post studies with a control group (n = 31, 23%) and without a control group (n = 51, 37.5%). The majority of interventions focused on education, physical activity, mindfulness, or relaxation. Thirty-seven (27%) studies had a multimodal intervention approach. On average, studies had relatively small samples (median = 61; mode = 30) and were conducted predominantly in North America (USA/Canada, n = 53). The findings were mixed overall, with some studies reporting benefits and others finding no effects. Dietary habits was the most successfully improved outcome (8/9), followed by indices of body composition (20/24), physical activity (PA) (11/14), and stress (49/66), with >70% of relevant studies in each of these categories reporting improvements. The lowest success rate was for work-related outcomes (16/32). Separate analysis of RCTs indicated that interventions that focus solely on education might be less likely to result in positive outcomes than interventions targeting behavioural change. CONCLUSIONS: Interventions targeting diet, body composition, PA, or stress are most likely to have positive outcomes for nurses' health and/or wellbeing. The methodologically strongest evidence (RCTs) is available for body composition and stress. Interventions relying solely on educational approaches are least likely to be effective. Organisational outcomes appear to be more challenging to change with lifestyle intervention, likely requiring more complex solutions including changes to the work environment. There is a need for more high-quality evidence since many studies had moderate or high risk of bias and low reporting quality.
Subject(s)
Exercise , Health Promotion/statistics & numerical data , Life Style , Mindfulness/statistics & numerical data , Nurses/statistics & numerical data , Relaxation , Adult , Female , Humans , Male , Middle AgedABSTRACT
Introduction There is little research on return to work (RTW) from a workplace perspective following hip and knee replacement (THR/TKR) despite employers and other workplace personnel having a key role. Our aim was to explore the experiences of individuals in the workplace in managing employees undergoing THR/TKR. Methods Employers and other workplace representatives from a cross-section of employment sectors and sizes, with experience of managing employees undergoing THR/TKR in the previous 12 months, were recruited. Interviewees included small business owners, line managers, colleagues, human resources managers and occupational health advisers. Semi-structured, qualitative interviews were conducted and data were analysed thematically. Results Twenty-five individuals were interviewed. The main themes identified were accommodating the employee, and barriers and facilitators to RTW. Accommodations included changes to the work environment, amended duties, altered hours, changed roles and colleague support. Perceived barriers and facilitators to RTW included the role of GPs and occupational health, surgical issues, characteristics of the work environment and of employees. Conclusions Employers are motivated to effect supported RTW for employees undergoing THR/TKR but have insufficient guidance. Strategies are required to signpost employers to existing RTW advice, and to develop recommendations specific to lower limb arthroplasty. Communication between medical practitioners and employers should be facilitated in order to enhance the RTW experience of individuals undergoing THR/TKR.
Subject(s)
Occupational Health Services/organization & administration , Return to Work , Arthroplasty, Replacement/rehabilitation , Humans , Professional Role , Qualitative Research , Workplace/organization & administrationABSTRACT
BACKGROUND: Patient reported outcome measures are frequently used standard questionnaires or tools designed to collect information from patients regarding their health status and care. Their use enables accurate and relevant insight into changes in health, quality of life, and symptom severity to be acquired. The purpose of this scoping review was to identify PROMs that had been subject to rigorous development and were suitable for use in palliative and end of life care for clinical practice and/or research purposes. The review had a specific focus on measures which could be used to assess perceptions of dignity in these contexts. METHODS: A scoping review of English-language papers published between 2005 and 2015. Searches were devised in conjunction with an information science specialist and were undertaken in Medline; PsycINFO; EMBASE; CINAHL; Social Science Citation Index; ASSIA; CENTRAL; CDSR; DARE; HTA; Oxford PROM Bibliography; PROQOLID, using dignity related terms such as personhood; dignity or dignified; patient-centred care; which were linked (via the Boolean operator "AND") to care-related terms such as terminal care; hospice care; palliative care; end of life. Papers were assessed against inclusion criteria and appraised for quality. RESULTS: The search strategy produced an initial 7845 articles. After three rounds of eligibility assessment, eight articles discussing eight patients reported outcome measures were found to meet the inclusion criteria and were included in the final review. These underwent a thorough critical appraisal process. All seven studies were empirical research focused on the development and testing of a PROM. CONCLUSIONS: The eight patient reported outcome measures had all undergone some psychometric testing, and covered dignity aspects suggesting that they could be considered for use for research purposes to assess dignity. There were also indications that some could be implemented into a clinical setting. However, each measure had limitations and scope for further development.
Subject(s)
Palliative Care , Patient Reported Outcome Measures , Personhood , Terminal Care , Humans , Psychometrics , Quality of Life , Surveys and QuestionnairesABSTRACT
BACKGROUND: End-of-life care (EOLC) has historically been associated with cancer care. However, demographic changes indicate that future provision must also cater for other long term conditions (LTC). An EOLC-LTC service, delivered by palliative care nurses, is currently being piloted in one area in the East Midlands with patients with cardiac and respiratory disease. In order to inform future commissioning, it is important to gain the views and experiences of those involved with the service. AIMS: This study aimed to explore patients, and their partners, views and experiences of the EOLC-LTC service. METHODS: Semi-structured interviews were used as part of a case study design, involving six cases. Each case consisted of the patient, their nominated family member/carer and key healthcare professionals involved in their care as identified by the patient. This paper reports on the findings from the interviews conducted with the six patients and their family member/carers. Data were analysed thematically. RESULTS: From the interviews, the following themes were identified: experiences managing a long term cardio-respiratory condition, the nurse service, building a close/therapeutic relationship and fragmentation and integration. CONCLUSIONS: This study has shown that the EOLC-LTC service is welcomed and highly regarded by patients and their family members/carers. Further studies are required to explore the views and experiences of other key stakeholders and to evaluate how well the pilot operates within the wider care pathway.
Subject(s)
Attitude of Health Personnel , Attitude to Health , Heart Failure/nursing , Hospice and Palliative Care Nursing , Nursing Services , Pulmonary Disease, Chronic Obstructive/nursing , Terminal Care , Aged , Aged, 80 and over , England , Female , General Practitioners , Humans , Male , Middle Aged , Nurse-Patient Relations , Nurses , Nurses, Community Health , Pilot Projects , Qualitative Research , Spouses , United KingdomABSTRACT
District and community nursing roles have changed rapidly in recent years. Community nurses are increasingly being tasked with carrying out multiple roles, which require them to put research into practice and use evidence-based tools and interventions. The implementation of interventions and tools needs to be developed from empirical research, requiring evidence, to be translated into practice. However, this process may be compromised or enhanced by a number of factors. This exploratory, descriptive qualitative study sought to identify barriers and facilitators to community nurses implementing research into practice. Four focus groups were conducted with registered community nurses and district nurses (n=22). Analysis identified four main themes: keeping up to date with evidence; using a clinical tool; education/training and implementation. Findings suggest that there are barriers at a personal, professional and organisational level. Strategies are suggested to overcome these obstacles.
Subject(s)
Attitude of Health Personnel , Community Health Nursing/organization & administration , Diffusion of Innovation , Evidence-Based Nursing/organization & administration , Nurse's Role/psychology , Nurses/psychology , Clinical Nursing Research , Focus Groups , Humans , Qualitative Research , Surveys and Questionnaires , United KingdomABSTRACT
BACKGROUND: Epidemiological predictions suggest that dementia will continue to rise and that this will have social and economic ramifications. Effective interventions, beyond pharmacological management are needed. Psychosocial interventions have largely been investigated in relation to carers of people with dementia, or with regards to their ability to manage dementia symptoms, improve cognition, and reduce challenging behaviour. However, since dementia is a life-limiting illness and people with dementia are at risk of having their personhood compromised, psychosocial interventions should seek to enhance personhood, and offer the potential for the person to leave a legacy. METHODS: An integrative review was carried out to identify, assess, appraise and synthesise studies featuring interventions, which relate to both personhood and legacy. Search strategies were developed in key databases: MEDLINE; PsycINFO; Embase; Joanna Briggs Institute; CINAHL; Cochrane Database of Systematic Reviews; ASSIA. Grey literature was also identified through free-text searches. RESULTS: Thirty six articles were included in the final review, these were tabulated and were assessed based on how the intervention related to personhood and legacy. Classification resulted in three themes being identified: Offering aspects of legacy; Acknowledging the person behind the patient; Facilitating meaningful engagement. Generally, personhood aspects of interventions were well reported, but further research is required to explore legacy potential of psychosocial interventions for people with dementia. CONCLUSION: The integrative review provides an overview and exploration of an under-researched area, and provides directions for future research, which will help expand the evidence base and ultimately help improve patient care for people with dementia and their families.
Subject(s)
Alzheimer Disease/psychology , Alzheimer Disease/therapy , Personhood , Adaptation, Psychological , Aged , Aged, 80 and over , Caregivers/psychology , Evidence-Based Medicine , Female , Humans , Male , Mental Recall , Outcome and Process Assessment, Health Care , Psychiatric RehabilitationABSTRACT
BACKGROUND: advance care planning (ACP) is a process to establish an individual's preference for care in the future; few UK studies have been conducted to ascertain public attitudes towards ACP. OBJECTIVE: the aim of this study was to assess the attitudes of older people in East Midlands through the development and administration of a survey. DESIGN: the survey questionnaire was developed on the basis of a literature review, exploratory focus groups with older adults and expert advisor input. The final questions were then re-tested with lay volunteers. SETTING: thirteen general practices were enrolled to send out surveys to potential participants aged 65 or older. There were no additional inclusion or exclusion criteria for participants. METHODS: simple descriptive statistics were used to describe the responses and regression analyses were used to evaluate which items predicted responses to key outcomes. RESULTS: of the 5,375 (34%) community-dwelling older peoples, 1,823 returned questionnaires. Seventeen per cent of respondents had prepared an ACP document; of whom, 4% had completed an Advance Decision to Refuse Treatment (ADRT). Five per cent of respondents stated that they had been offered an opportunity to talk about ACP. Predictors of completing an ACP document included: being offered the opportunity to discuss ACP, older age, better physical function and male gender. Levels of trust were higher for families than for professionals. One-third of the respondents would be interested in talking about ACP if sessions were available. CONCLUSION: although a third of the respondents were in favour of discussing ACP if the opportunity was available with their GP, only a relative minority (17%) had actively engaged. Preferences were for informal discussions with family rather than professionals.
Subject(s)
Advance Care Planning , Attitude to Health , Age Factors , Aged/psychology , Aged/statistics & numerical data , Aged, 80 and over , Female , Focus Groups , Humans , Male , Motivation , Sex Factors , Surveys and Questionnaires , United Kingdom/epidemiologyABSTRACT
BACKGROUND: Providing person-centred, dignity-conserving care for hospitalised patients is central to many healthcare policies and essential to the provision of effective palliative care. The Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" was designed from empirical research on patients' perceptions of their dignity at end of life to help healthcare professionals (HCPs) understand the patient as a person. METHODS: This mixed method pilot study was designed to inform a larger multisite study in the future. It tests the hypothesis that the PDQ intervention could be used to enhance a more person-centred climate for people with palliative care needs in the acute hospital setting, and provide evidence regarding its acceptability. Outcome measures pre and post intervention Person-centred Climate Questionnaire--patient version (PCQ-P), and the Consultation and Relational Empathy (CARE) measure; PDQ feedback questionnaires were used for all participants post intervention, in addition to qualitative interviews. RESULTS: 30 patients, 17 HCPs, and 4 family members participated. Results showed a positive correlation between higher PCQ-P scores and higher CARE scores, indicating that the PDQ can make improvements to a person-centred environment and levels of empathy perceived by patients. Individual results from the PCQ-P and the CARE indicated overall improvements in the majority of fields. The PDQ supported disclosure of information previously unknown to HCPs, has implications for improving person-centred care. Positive results from PDQ feedback questionnaires were received from all participants. Qualitative findings indicated patients' appreciation of staff (Attributes and attitudes), that patients wanted staff to have awareness of them (Know me as a person), take the time to talk, and work flexibly, to allow for patient individuality (Time and place). CONCLUSION: The PDQ has potential to improve patients' perceptions of care, and HCP attitudes. Furthermore, it was well received by participants. The PDQ could be incorporated into clinical practice for the care of palliative care patients in the acute setting to the benefit of personalized and dignified care. Further research using the PDQ across wider geographical areas, and more diverse settings, would be beneficial.
Subject(s)
Attitude of Health Personnel , Family/psychology , Inpatients/psychology , Palliative Care/psychology , Patient-Centered Care/organization & administration , Adult , Age Factors , Aged , Aged, 80 and over , Female , Hospitals, Teaching/organization & administration , Humans , Interviews as Topic , Male , Middle Aged , Pilot Projects , Scotland , Sex Factors , Socioeconomic Factors , Time FactorsABSTRACT
AIMS AND OBJECTIVES: To report an integrative review of evidence relating to dignity-conserving care in palliative care settings. It will also suggest avenues for future research. BACKGROUND: Research suggests that dignity is welcomed by those receiving palliative and end of life care. However, as dignity is a subjective term, it is not always explicit how this may be employed by nurses. Given that the preferred place of care for patients with palliative care needs is the home, the issue of dignity may be particularly important for community nurses. Therefore, synthesising evidence of dignity-conserving care for community nurses caring for people with palliative care needs provides clarity in a complex area of palliative care research. DESIGN: Integrative literature review. METHOD: The review involved key bibliographic and review databases CINAHL, MEDLINE, EMBASE, ASSIA and PsycInfo. Medical Subject Headings and free terms were undertaken for articles published from January 2009-September 2014 and retrieved papers were assessed against inclusion criteria. Final included articles were reviewed for reported dignity-conserving care actions, which were classified under nine themes of the Dignity Model. RESULTS: Thirty-one articles were included. Nine Dignity Model themes were used to classify care actions: Level of Independence; Symptom Distress; Dignity-Conserving Perspectives; Dignity-Conserving Practices; Privacy Boundaries; Social Support; Care Tenor; Burden to Others; and Aftermath Concerns. Reported care actions included listening, conveying empathy, communication and involving patients in care. CONCLUSION: Care actions could be classified under most of Dignity Model themes. However, there were less reported care actions related to Level of Independence and Aftermath Concerns, which meant that these had to be formulated independently. Future research should be structured around these areas to determine appropriate care actions for nurses to give dignity-conserving care that addresses these specific themes. RELEVANCE TO CLINICAL PRACTICE: Synthesising the available evidence of dignity-conserving care identifies evidence-based care actions and provides guidance to nurses in clinical practice caring for patients with palliative care needs. Future opportunities for research are identified to guide promotion of dignity in palliative care.
Subject(s)
Palliative Care , Personhood , Communication , Health Services Needs and Demand , Humans , Social Support , Terminal CareABSTRACT
This paper is a report on a qualitative study which considered the issue of how lecturers feel about teaching and managing the topic of culture and racism within their role as nurse educators. The issue of cultural diversity and the related issue of racism within nursing and society more generally means that the problem cannot be ignored since one of the central tenets of nursing is that care should be delivered in non-discriminatory ways. We interviewed a group of lecturers within a UK university to explore their views on the topic. We produced six themes: Culture; the existence of racism within nursing; challenging racism; political correctness; strategies adopted to address issues in the classroom and the presence of cultural diversity within the curriculum. We identified that the lecturers in our study were keen to address the issue but were also very concerned about their own abilities and confidence in this area.