A qualitative synthesis of diabetes self-management strategies for long term medical outcomes and quality of life in the UK

BACKGROUND Quality of life (QoL) is increasingly recognised as a key outcome of self-management interventions for bipolar disorder (BD). Mobile phone applications (apps) can increase access to evidence-based self-management strategies and provide real-time support. However, while individuals with lived experience desire support with monitoring and improving broader health domains, existing BD apps largely target mood symptoms only. Further, evidence from the broader mHealth literature has shown that the desires and goals of end-users are not adequately taken into account during app development, and as a result engagement with mental health apps is suboptimal. To capitalise on the potential of apps to optimise wellness in BD, there is a need for interventions developed in consultation with real-world users that are designed to support QoL self-monitoring and self-management. Objective: This mixed methods pilot study is designed to evaluate the beta version of the newly developed PolarUs app, which aims to support QoL self-monitoring and self-management in people with BD. Developed using a community-based participatory research framework, the PolarUs app builds on the web-based adaptation of a BD-specific QoL self-assessment measure, and integrates material from a web-based portal providing information on evidence-informed self-management strategies in BD. OBJECTIVE The primary objectives of this project are to: (1) evaluate PolarUs app feasibility (via behavioral usage metrics); (2) evaluate PolarUs impact (via the Brief Quality of Life in Bipolar Disorders, QoL.BD scale, our primary outcomes measure); and (3) explore engagement with the PolarUs app (via both quantitative and qualitative methods). METHODS Study participants will be North American residents (N=150) aged 18-65 years with a DSM-5 diagnosis of BD-I, BD-II or BD not otherwise specified (NOS) as assessed by a structured diagnostic interview. An embedded mixed-methods research design will be adopted; qualitative interviews with a purposefully selected sub-sample (~n=30) of participants will be conducted to explore in more depth feasibility, impact and engagement with the PolarUs app over the 12-week study period. RESULTS At the time of publication of this protocol, the development of the beta version of the PolarUs app is complete. Participant enrollment is expected to begin in February 2022. Data collection is expected to be completed by December 2022. CONCLUSIONS Beyond contributing knowledge on the feasibility and impacts of a novel app to support QoL and self-management in BD, this study is also expected to provide new knowledge on engagement with mHealth apps. Furthermore, it is expected to function as a case study of successful co-design between individuals living with BD, clinicians who specialise in the treatment of BD, and BD researchers, providing a template for future use of community-based participatory research frameworks in mHealth intervention development. Results will be used to further refine the PolarUs app and inform the design of a larger clinical trial.

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A Collaborative m-Health Platform for Evidence-Based Self-Management and Detection of Chronic Multimorbidity Development and Progression

Advances in Healthcare Information Systems and Administration - M-Health Innovations for Patient-Centered Care ◽

10.4018/978-1-4666-9861-1.ch003 ◽

2016 ◽

pp. 52-71

Author(s):

Kostas Giokas ◽

Panagiotis Katrakazas ◽

Dimitris Koutsouris

Keyword(s):

Quality Of Life ◽

Chronic Disease ◽

Self Management ◽

Multiple Chronic Conditions ◽

Evidence Based ◽

Age Group ◽

Guidelines Development ◽

Utilization Of Healthcare

The ageing process of EU population has played a key role raising the prevalence of chronic disease, with more than 80% of people in the last age group (65-74) reported to be having three or more long-term Multimorbidity or Multiple Chronic Conditions (MCCs). The main problem is that currently, clinicians have limited guidance, as well as evidence of how to approach care decisions for such patients. As a consequence, the understanding of how to best take care of patients with multimorbidity conditions, may lead to improvements in Quality of Life (QoL), utilization of healthcare, safety, morbidity and mortality. The root of this problem is not narrowly confined to guidelines development and application, but is inherent throughout the translational path from the generation of evidence to the synthesis of the evidence upon which guidelines depend.

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SP3.1.8 What happens to patients with acutely symptomatic hernia in the UK? Findings from the MASH study

British Journal of Surgery ◽

10.1093/bjs/znab361.060 ◽

2021 ◽

Vol 108 (Supplement_7) ◽

Author(s):

Victoria Proctor ◽

MASH Steering Group ◽

MASH Collaborators

Keyword(s):

Quality Of Life ◽

Elective Surgery ◽

Management Strategies ◽

Hernia Surgery ◽

Phone Calls ◽

Risk Patients ◽

Hospital Morbidity ◽

The Uk

Abstract Aims Acutely symptomatic abdominal wall and groin hernias (ASH) are a common reason for acute surgical admissions in the UK. There is limited data to guide the treatment of such presentations. This study aimed to assess outcomes of emergency hernia surgery, and identify common management strategies, to improve care for these high risk patients. Methods A 12 week, UK-based, multi-centre, collaborative, prospective cohort study (NCT04197271) recruited adults with ASH. Data on investigations, specific surgical intervention, in-hospital morbidity and mortality, and quality of life was measured. 30 and 90-day follow-up phone calls collected complications and quality of life. Descriptive analyses were performed to describe population and outcomes. Results Twenty-three acute Trusts recruited 264 patients. Inguinal (37.9%) and umbilical (37.1%) were the most common hernia locations. 17% were awaiting elective surgery and 17% had been previously declined intervention. CT was performed in 47%. 82% of patients had surgery within 48 hours, with 95% of procedures performed open and 93% under general anaesthesia. 3/11 laparoscopic procedures were converted to open. Mesh was used in 55%, this was typically synthetic non-absorbable (86%). Complications were infrequent; 2% developed pneumonia or delirium. Surgical site infection occurred in 3% and mortality was 1.2%. Quality of life improved between baseline and 30-days following repair. Conclusions There is variation in the management of ASH in the UK, particularly with repair techniques, use of mesh and laparoscopy. One in five patients was awaiting repair; this might indicate a need for expedited pathways and reprioritising of elective hernia repair.

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Long-term effect of the self-management comprehensive coping strategy program on quality of life in patients with breast cancer treated with high-dose chemotherapy

Psycho-Oncology ◽

10.1002/pon.3031 ◽

2012 ◽

Vol 22 (3) ◽

pp. 530-539 ◽

Cited By ~ 31

Author(s):

Fannie Gaston-Johansson ◽

Jane M. Fall-Dickson ◽

Joy P. Nanda ◽

Elisabeth Kenne Sarenmalm ◽

Maria Browall ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

High Dose Chemotherapy ◽

Term Effect ◽

The Self ◽

Self Management ◽

High Dose ◽

Long Term Effect

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Life-balance self-management programme for community-based older adults living with chronic disease: a feasibility study

European Journal for Person Centered Healthcare ◽

10.5750/ejpch.v4i3.1128 ◽

2016 ◽

Vol 4 (3) ◽

pp. 459 ◽

Cited By ~ 1

Author(s):

Beverley Ann Burrell ◽

Jennifer Jordan ◽

Marie Crowe ◽

Amanda Wilkinson ◽

Jonathan Williman ◽

...

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Chronic Disease ◽

Management Programme ◽

Self Management ◽

Community Based ◽

Life Balance ◽

Term Condition

Rationale, aims and objectives: Health management strategies are aimed at promoting self-management, healthy lifestyle choices to improve health status and quality of life while addressing cost-effectiveness in health services. We aimed to develop a Life-balance Self-management Programme (LBSP) to test whether taking a trans-diagnostic approach to education combined with presenting mindfulness concepts would enhance self-management with older people with at least one long term condition. This study aimed to test the feasibility of the LBSP in terms of its recruitment strategies, suitability of data collection tools and procedures and if it was acceptable to those receiving it via surveys. Methods: The study utilized a descriptive pre/post-test intervention design. Participants sought were community-based older adults (aged 65+) living with at least one long-term condition and resident in Canterbury, New Zealand. The data analysis was descriptive, correlation between baseline and follow-up were determined.Results: Participants (n=10) reported that they had learnt from the intervention, had adjusted approaches for healthier living and improved self-managing skills. Nil attrition supported the feasibility and acceptability of the intervention.A high correlation was found between measures taken at baseline and at 3 month post-intervention, suggesting meaningful change could be detected within a modest sample size. Conclusion The LBSP, based on empirical and theoretical knowledge, is feasible for trans-diagnostic groups of community-based older adults living with chronic disease. A larger intervention study is planned to test quality of life and functioning as the main outcomes of the programme promoting self-management and to adequately assess effectiveness

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Hopes and fears before opioid tapering: a quantitative and qualitative study of patients with chronic pain and long-term opioids

British Journal of Pain ◽

10.1177/2049463720974053 ◽

2020 ◽

pp. 204946372097405

Author(s):

Jane Quinlan ◽

Heather Willson ◽

Katheryn Grange

Keyword(s):

Quality Of Life ◽

Chronic Pain ◽

Side Effects ◽

Phenomenological Approach ◽

Free Text ◽

Significant Depression ◽

Opioid Tapering ◽

The Uk

Background: It is clear that the risks of opioids in chronic pain outweigh the benefits, creating a drive for clinicians to support patients taper and stop long-term opioids. However, it is not known how patients who have been taking these medicines for months or years feel about reducing them. Using quantitative and qualitative data, this study describes the psychological complexity of these patients and examines their hopes and fears before opioid reduction. Methods: Sixty patients attending the opioid clinic completed psychological and pain questionnaires, providing quantitative data, just before they commenced opioid tapering. They scored the severity of opioid side effects and completed a free text framework to express their beliefs about stopping or continuing opioids. A phenomenological approach was used to identify common qualitative themes. Results: Most patients were taking opioid doses above the UK recommended maximum dose and reported severe pain with high pain interference. Over 80% of patients described significant depression and 60% significant anxiety. Negative themes around stopping opioids were more common than positive ones, with 63% patients fearing increased pain. A quarter of patients referred to addiction and 16% feared withdrawal. Five patients hoped for a better quality of life; seven feared a worse one. Opioid side effects were common and severe. Conclusion: Patients with chronic pain taking long-term opioids demonstrate high psychological distress and low self-efficacy. Their concerns around opioid tapering relate to pain, quality of life and withdrawal. Identifying and addressing patients’ individual concerns should increase the likelihood of successful opioid tapering.

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QALYS AND LONG-TERM CARE FOR ELDERLY PEOPLE IN THE UK: SCALES FOR ASSESSMENT OF QUALITY OF LIFE

Age and Ageing ◽

10.1093/ageing/17.6.379 ◽

1988 ◽

Vol 17 (6) ◽

pp. 379-387 ◽

Cited By ~ 19

Author(s):

CAM DONALDSON ◽

ANN ATKINSON ◽

JOHN BOND ◽

KEN WRIGHT

Keyword(s):

Quality Of Life ◽

Elderly People ◽

Long Term Care ◽

Term Care ◽

The Uk

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The role of the nurse in the care and management of patients with atopic dermatitis

BMC Nursing ◽

10.1186/s12912-020-00494-y ◽

2020 ◽

Vol 19 (1) ◽

Author(s):

Harmieke van Os-Medendorp ◽

Elfie Deprez ◽

Nele Maes ◽

Sheila Ryan ◽

Karina Jackson ◽

...

Keyword(s):

Quality Of Life ◽

Atopic Dermatitis ◽

Treatment Adherence ◽

Self Management ◽

Severe Atopic Dermatitis ◽

Main Body ◽

Wide Range

Abstract Background The purpose of this paper is to provide an overview of key aspects of specialised dermatology nursing practice in the management of patients with moderate to severe atopic dermatitis. The role of dermatology nurse specialists in supporting patients and promoting disease understanding, education and treatment adherence continues to evolve. As features of specialised nursing care can also inform other nursing staff in a wide range of care settings, an overview of key components is examined. Observations presented are from a pan-European perspective and represent the collected view of a group of dermatology nurse specialists, dermatologists and patient advocates following two round-table discussions. Main body Atopic dermatitis is a common, chronic, inflammatory disease characterised by erythematous/scaling skin lesions, with often intense pruritus. Disease course is cyclic with periodic disease flares of varying intensity, presenting management challenges to patients and families. Dermatology nurse specialists play a key role in providing education and substantial patient support to improve treatment outcomes and quality of life to patients and their family, delivered within a multidisciplinary team framework. Nurse-led education and 'eczema schools’ are of benefit in reducing disease severity and improving quality of life by enhancing self-management, adherence and patient engagement. eHealth tools, such as patient portals or online training platforms, can provide online learning, individualised education, and help to improve engagement. These and other initiatives, such as written action plans, are all essential to improve or maintain treatment adherence, self-management and quality of life. Conclusions Dermatology nurse specialists play a central role in the assessment and management of moderate to severe atopic dermatitis patients and families. This places them in an ideal position to build strong and often long-term relationships with patients and parents. Such engagement promotes trust, assists in setting realistic expectations of treatment and outcomes, and enhances self-management and engagement in their own care. Providing emotional support, as well as formal and systematic education (including individualised practical advice) all contribute to improved treatment adherence and can enhance the quality of life of patients and their families throughout the course of this long-term condition.

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Understanding the impact of incontinence on Veterans’ self-management strategies, quality of life and treatment experiences

10.1101/2020.11.25.20231506 ◽

2020 ◽

Author(s):

Linda Cowan ◽

Sarah Bradley ◽

Andrew R. Devendorf ◽

Lelia Barks ◽

Tatiana Orozco ◽

...

Keyword(s):

Quality Of Life ◽

Urinary Incontinence ◽

Fecal Incontinence ◽

Healthcare Provider ◽

Caregiver Burden ◽

Management Strategies ◽

Self Management ◽

List Type ◽

Structured Interviews

AbstractBackgroundUrinary and fecal incontinence contribute to significant quality of life impairments for patients and caregivers. Preliminary research suggests that incontinence rates may be higher among Veterans. However, few studies have examined incontinence experiences among Veterans and their caregivers.ObjectivesWe aimed to demonstrate the feasibility of conducting a one-year, telephone survey with Veterans and their caregivers to help inform larger studies. By including both Veteran and caregiver perspectives, we explored how incontinence impacts Veterans’ self-management strategies, quality of life, and treatment experiences.DesignWe used a mixed methods design, employing quantitative (i.e., cross-sectional survey) and qualitative approaches (i.e., semi-structured interviews).ParticipantsOur sample included 64 Veterans with urinary incontinence, fecal incontinence, or mixed incontinence, and 36 caregivers. A subset of 18 Veterans and 8 caregivers completed semi-structured interviews.MethodsData were collected via telephone surveys over the course of 1-year from a small research team at the Veterans Health Administration (VHA). Participants completed measures about the Veteran’s incontinence severity, quality of life, and VHA treatment experiences. Interviews asked participants about their perceptions and satisfaction in receiving treatment for the Veterans’ incontinence. Qualitative themes were extracted using a Rapid Assessment Process model.ResultsVeterans’ self-reported physical quality of life correlated negatively and significantly with both urinary and fecal incontinence severity, as well as negatively and significantly with urinary continence bother (rs range: −.36 to −.47, ps < .01). Veterans’ mental quality of life correlated negatively and significantly with urinary incontinence bother (r = −.43, p < .001). About 67% Veterans experienced incontinence symptoms for 5-years or more, yet 44% waited at least 1-year to discuss incontinence with a VHA provider. Most Veterans (92%) reported speaking with a VHA provider about incontinence, while only 42% reported speaking with a non-VHA provider. Qualitative findings revealed that, upon speaking to a provider, Veterans felt comfortable but also desired more incontinence education from their providers, including obtaining more appropriate and tailored treatment options. While most Veterans followed their provider’s treatment recommendations, some felt unsatisfied with treatments that they perceived as embarrassing.ConclusionsRecruiting a substantial sample of Veterans with incontinence, and their caregivers, is feasible using our recruitment methods, which can inform larger studies. Our study revealed that incontinence symptoms interfere significantly with the quality of life of Veterans and their caregivers. Intervening at the healthcare level by educating providers and systematizing inquiry into incontinence for higher risk populations would be fruitful to explore.Contribution of the PaperWhat is already known about this topic?Urinary incontinence is more prevalent than fecal incontinence, and both are associated with significant impairments in physical, mental, and social functioning.Urinary and fecal incontinence become more prevalent with older age and additional chronic health conditions.There is a lack of incontinence diagnoses documented in Veteran’s medical records, even when incontinence is present. Few studies have reported on caregiver burden related to incontinence care.What this paper addsThis study is the first to report on the potential delay between Veteran’s experiencing symptoms of incontinence and informing their healthcare provider or caregiver about those symptoms (sometimes 5-years or more).Insights on Veteran and caregiver satisfaction with incontinence care can guide healthcare interventions to improve incontinence care.Both Veteran quality of life and caregiver burden correlated significantly and negatively with satisfaction with incontinence treatments tried and number of treatments tried. Only 21% of Veterans were satisfied with the treatment plan they were given, suggesting a potential knowledge gap or opportunity for improvement in healthcare provider approaches to incontinence management.

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Supporting people to self-manage their allergic rhinitis

Practice Nursing ◽

10.12968/pnur.2021.32.7.264 ◽

2021 ◽

Vol 32 (7) ◽

pp. 264-268

Author(s):

Viv Marsh

Keyword(s):

Quality Of Life ◽

Allergic Rhinitis ◽

Health Professionals ◽

Hay Fever ◽

Self Management ◽

Nasal Allergy ◽

The Uk ◽

And Control ◽

The Impact

Allergic rhinitis is common in the UK and can cause significant symptoms and reductions in quality of life. Viv Marsh considers how health professionals can support self-management of these patients Many of us look forward to the spring and summer months with warmer weather, longer days and more opportunity to spend time outdoors. But for hay fever sufferers these months can be truly miserable. For others, the winter months can be equally challenging as, with more time spent indoors, exposure to indoor allergens is greater. Hay fever is the term commonly used to describe seasonal nasal allergy triggered by pollen. It affects many children and adults in the UK, causing significant symptoms and reduction in quality of life. Often, people with allergic rhinitis try to manage the condition themselves using home or over-the-counter remedies to reduce and control symptoms. However, effective management may not be straightforward and guidance from knowledgeable and experienced health professionals can lead to improved outcomes. Taking an evidence-based approach, this article will explore the impact of allergic rhinitis on those who experience it, and will consider how health professionals can support self-management to enable people with the condition to manage their symptoms and minimise its impact on their lives.

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