Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self-management of their chronic kidney disease

Introduction The responsibility for managing a long-term condition (LTC) such as chronic kidney disease (CKD) typically transfers from parent to child, as children become older. However, children can find it challenging to become independent at managing their LTC, and evidence for how healthcare professionals (HCPs) support transfer of responsibility is limited. This study aimed to explore how young people with CKD assume responsibility for managing their condition and the HCP's role during this process. Methods Sampling, qualitative data collection and analysis were guided by a constructivist grounded theory approach. Individual and dyadic interviews, and focus groups, were conducted with 16 young people aged 13–17 years with CKD, 13 parents and 20 HCPs. Findings A grounded theory, shifting responsibilities, was developed that provides new insights into how young people's, parents' and HCPs' constructions of the transfer of responsibility differed. These diverse constructions contributed to multiple uncertainties around the role of HCPs, when the process started and was completed and whether the endpoint of the process was young people's self-management or young person–parent shared management. Conclusion Families would benefit from HCP support over a longer timeframe that integrates assuming self-management responsibility with gaining independence in other areas of their lives and focuses on young people ‘doing’ self-management. Patient or Public Contribution Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery

Supporting patients to prepare for total knee replacement: evidence-, theory- and person-based development of a ‘Virtual Knee School’ digital intervention

Introduction Digital delivery of pre-operative total knee replacement (TKR) education and prehabilitation could improve patient outcomes pre- and post-operatively. Rigorously developing digital interventions is vital to help ensure they achieve their intended outcomes whilst mitigating their potential drawbacks. Objective To develop a pre-operative TKR education and prehabilitation digital intervention, the ‘Virtual Knee School’ (VKS). Methods The VKS was developed using an evidence-, theory- and person-based approach. This involved a mixed methods design with four phases. The first three focused on planning the VKS. The final phase involved creating a VKS prototype and iteratively refining it through concurrent think-aloud interviews with nine patients who were awaiting/had undergone TKR. Meta-inferences were generated by integrating findings from all the phases. Results Most participants found the VKS prototype acceptable overall and considered it a valuable resource. Conversely, a minority of participants felt the prototype’s digital format or content did not meet their individual needs. Participants’ feedback was used to refine the prototype’s information architecture, design, and content. Two meta-inferences were generated and recommend: 1.Comprehensive pre-operative TKR education and prehabilitation support should be rapidly accessible in digital and non-digital formats. 2.Pre-operative TKR digital interventions should employ computer- and self-tailoring to account for patients’ individual needs and preferences. Conclusions Integrating evidence, theory, and stakeholders’ perspectives enabled the development of a promising VKS digital intervention for patients awaiting TKR. The findings suggest future research evaluating the VKS is warranted and provide recommendations for optimising pre-operative TKR care. Patient or Public contribution Patient and Public Involvement (PPI) was central throughout the project. For example, PPI representatives contributed to the project planning, were valued members of the Project Advisory Group, had key roles in developing the VKS prototype, and helped disseminate the project findings

Content and delivery of pre-operative interventions for patients undergoing total knee replacement: A rapid review

Background: Total knee replacement (TKR) is a common operation typically performed for end-stage knee osteoarthritis. Patients awaiting TKR often have poor health-related quality of life. Approximately 20% of patients experience persistent pain post-TKR. Pre-operative TKR interventions could improve pre- and post-operative outcomes, but future research is required to inform their design. This review aimed to identify and synthesize recent literature on the content and delivery of pre-operative TKR interventions to help guide future research and clinical practice. Methods: This rapid review included randomized trials of pre-operative TKR interventions (‘outcomes studies’) and primary studies exploring patients’ and/or health professionals’ views of pre-operative TKR interventions (‘views studies’). Medline, Embase, PsycINFO, CINAHL and the Cochrane Central Register of Controlled Trials were searched for English language studies published between January 2009 and December 2020. Eligible studies’ reference lists were screened. Studies were appraised using the Mixed Methods Appraisal Tool. The findings were narratively synthesized using a convergent segregated approach. Results: From 3263 records identified, 52 studies were included (29 outcomes studies, 21 views studies, two outcomes/views studies). The studies’ methodological quality varied but was generally highest in qualitative studies. The outcomes studies investigated education (n=5), exercise (n=20), psychological (n=2), lifestyle (n=1) and/or other interventions (n=5). The views studies addressed education (n=20), exercise (n=3), psychological (n=1), lifestyle (n=4) and/or other interventions (n=1). Only three outcomes studies (two randomized controlled trials (RCTs) and a pilot study) compared the effectiveness of intervention components/delivery approaches. The two RCTs’ results suggest that pre-operative TKR exercise interventions are equally effective regardless of whether they include strength or strength plus balance training and whether they are hospital- or home-based. Personal tailoring and using more than one delivery format were associated with improved outcomes and/or perceived as beneficial for multiple intervention types. Conclusions: Definitive evidence on the optimal design of pre-operative TKR interventions is lacking. Personal tailoring and employing multiple delivery formats appear to be valuable design elements. Preliminary evidence suggests that including balance training and hospital versus home delivery may not be critical design elements for pre-operative TKR exercise interventions

Definitions and methods of measuring and reporting on injurious falls in randomised controlled fall prevention trials: a systematic review

<p>Abstract</p> <p>Background</p> <p>The standardisation of the assessment methodology and case definition represents a major precondition for the comparison of study results and the conduction of meta-analyses. International guidelines provide recommendations for the standardisation of falls methodology; however, injurious falls have not been targeted. The aim of the present article was to review systematically the range of case definitions and methods used to measure and report on injurious falls in randomised controlled trials (RCTs) on fall prevention.</p> <p>Methods</p> <p>An electronic literature search of selected comprehensive databases was performed to identify injurious falls definitions in published trials. Inclusion criteria were: RCTs on falls prevention published in English, study population ≥ 65 years, definition of injurious falls as a study endpoint by using the terms "injuries" and "falls".</p> <p>Results</p> <p>The search yielded 2089 articles, 2048 were excluded according to defined inclusion criteria. Forty-one articles were included. The systematic analysis of the methodology applied in RCTs disclosed substantial variations in the definition and methods used to measure and document injurious falls. The limited standardisation hampered comparability of study results. Our results also highlight that studies which used a similar, standardised definition of injurious falls showed comparable outcomes.</p> <p>Conclusions</p> <p>No standard for defining, measuring, and documenting injurious falls could be identified among published RCTs. A standardised injurious falls definition enhances the comparability of study results as demonstrated by a subgroup of RCTs used a similar definition. Recommendations for standardising the methodology are given in the present review.</p

Implementing the NICE osteoarthritis guidelines: A mixed methods study and cluster randomised trial of a model osteoarthritis consultation in primary care - the Management of OsteoArthritis In Consultations (MOSAICS) study protocol

There is as yet no evidence on the feasibility of implementing recommendations from the National Institute of Health and Care Excellence (NICE) osteoarthritis (OA) guidelines in primary care, or of the effect these recommendations have on the condition. The primary aim of this study is to determine the clinical and cost effectiveness of a model OA consultation (MOAC), implementing the core recommendations from the NICE OA guidelines in primary care. Secondary aims are to investigate the impact, feasibility and acceptability of the MOAC intervention; to develop and evaluate a training package for management of OA by general practitioners (GPs) and practice nurses; test the feasibility of deriving 'quality markers' of OA management using a new consultation template and medical record review; and describe the uptake of core NICE OA recommendations in participants aged 45 years and over with joint pain.Design: A mixed methods study with a nested cluster randomised controlled trial.Method: This study was developed according to a defined theoretical framework (the Whole System Informing Self-management Engagement). An overarching model (the Normalisation Process Theory) will be employed to undertake a comprehensive 'whole-system' evaluation of the processes and outcomes of implementing the MOAC intervention. The primary outcome is general physical health (Short Form-12 Physical component score [PCS]) (Ware 1996). The impact, acceptability and feasibility of the MOAC intervention at practice level will be assessed by comparing intervention and control practices using a Quality Indicators template and medical record review. Impact and acceptability of the intervention for patients will be assessed via self-completed outcome measures and semi-structured interviews. The impact, acceptability and feasibility of the MOAC intervention and training for GPs and practice nurses will be evaluated using a variety of methods including questionnaires, semi-structured interviews, and observations.Discussion: The main output from the study will be to determine whether the MOAC intervention is clinically and cost effective. Additional outputs will be the development of the MOAC for patients consulting with joint pain in primary care, training and educational materials, and resources for patients and professionals regarding supported self-management and uptake of NICE guidance. Trial registration: ISRCTN number: ISRCTN06984617

Pain control and service provision for adults with end stage lower limb osteoarthritis : a longitudinal study

EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Specialist Community Nurses: A Critical Analysis of Their Role in the Management of Long-Term Conditions

The aim of this narrative review is to identify strategies in use by specialist community and public health nurses in the prevention, care and management of individuals with long-term conditions, specifically chronic obstructive pulmonary disease (COPD) and musculoskeletal disorders. These conditions have been selected as they are highly prevalent; a burden on health services globally and a major public health issue. From a UK policy perspective, specialist community nurses have been placed at the forefront of taking a lead role in the coordination and delivery of more responsive services for individuals with long-term conditions; whether this has been an effective use of skills and resource is questionable. We systematically searched relevant databases between 1999–2009 to identify interventions used by specialist community nurses and critically appraised the studies. This review reports on impact and value of interventions used by specialist community nurses in the prevention and management of COPD and musculoskeletal conditions, and makes recommendations for improving services