A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment.

BACKGROUND: most people living with dementia (PLWD) will develop incontinence problems with associated harmful consequences. Well-contained incontinence is often the main treatment goal. It would therefore be expected that poorly contained incontinence would have a negative impact. AIM: to investigate differences in how well-contained or poorly contained incontinence impacts on the experience of living with incontinence for PLWD at home and their carers. DESIGN: secondary analysis of a qualitative study. METHODS: semi-structured interviews were undertaken with PLWD, carers and healthcare professionals (continence or dementia nurses). PLWD and carers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Interviews were recorded and transcribed verbatim. Framework analysis was used. RESULTS: forty-five people (twenty-six carers, two PLWD, nine continence nurses and eight dementia nurses) participated. Despite poorly contained incontinence, some PLWD/carer dyads appeared relatively unaffected by incontinence. Conversely, one or both members of some dyads who achieved good containment found incontinence care highly challenging. Four themes were identified, together forming a preliminary model of incontinence containment and impact, as follows. CONCLUSION: reliable containment is an important goal for PLWD living at home and their carers, but it is not the only goal. Other factors, such as behaviours that challenge or carer coping strategies, can mean that even well-contained incontinence can have a negative impact. This paper proposes a preliminary model for evaluation.

Teriparatide treatment in severe osteoporosis - a controlled 10-year follow-up study.

BACKGROUND: Teriparatide was the first anabolic agent recommended for the treatment of osteoporosis. Long-term real-world, controlled studies are not available. The purpose was to evaluate the long-term effects of treatment with teriparatide on fractures and Health Related Quality of Life in subjects with established osteoporosis in comparison with placebo treated patients with osteoporosis and the general population. METHODS: A 10-year follow-up was performed after a prospective, open-labelled study with teriparatide 20 µg given subcutaneously daily for a mean of 18 months (range 14-24 months) in 40 women, mean age 69 years, with osteoporosis and vertebral compression. Placebo treated women, n = 25, mean age 60 years, from a randomized, double-blind, placebo-controlled growth hormone trial with daily subcutaneous injections for 18 months, with osteoporosis were used as controls. Dual energy x-ray absorptiometry and questionnaires were performed at start, after 18 months, after 36 months and after 10 years. Women, n = 233, of similar age from a random population sample, also served as controls and were followed in parallel. All fractures were X-ray verified. RESULTS: Fractures decreased from 100 to 35% in the teriparatide treated patients (p < 0.0001) to similar levels as in the population sample, 25 to 28% at start and after 10 years, respectively. Bone mineral density increased on teriparatide but returned to levels at treatment start after 10 years. Health Related Quality of Life was lower in the teriparatide group than in the population (p < 0.001) before and, after treatment and at 10 years. CONCLUSIONS: Anabolic hormonal treatment with teriparatide reduced fracture prevalence to similar levels as in the general population at 10 years' follow-up. Health Related Quality of Life was low in osteoporosis and unaffected by bone specific treatment.

Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions.

BACKGROUND: many people living at home with dementia (PLWD) also have poorly managed toilet-use or incontinence problems with damaging consequences for both people with dementia, unpaid carers and healthcare professionals (HCPs). Currently, there are no theoretically or empirically based interventions to help. The underlying causes and subsequent consequences of these problems need to be fully understood in order to support the development of interventions that have the potential to decrease the impact of these problems on people's lives. AIM: to establish the range of causes, consequences and potential solutions of toilet-use and incontinence problems for PLWD and their carers. METHOD: a qualitative design was used. Semi-structured interviews were undertaken with PLWD, carers and HCPs (continence or dementia nurses). PLWD and carers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Interviews were digitally recorded and transcribed verbatim. Framework analysis was used to interpret the data to address the goal of the research. RESULTS: in total, 45 people (26 unpaid carers, 2 people with dementia, 9 continence and 8 dementia HCPs) took part. The causes of toilet-use and incontinence problems were reported to be multi-faceted and complex including those related to dementia (e.g. lack of insight into toileting needs or how to use the toilet), those which are physical (e.g. existing bladder or bowel issues or poor mobility), psychosocial (e.g. inability to ask for help for incontinence) or societal (e.g. fear of stigma), or related to care systems (e.g. lack of expert knowledge) or products (e.g. poor fit or confusing for users). Consequences included harms to physical and mental health, social isolation, increased carer workload and care system resource implications. CONCLUSION: this study provides the first detailed characterisation of the causes and consequences of and potential solutions for incontinence problems for PLWD at home and their carers. Multifaceted and complex problems were identified, layering dementia, physical, psychosocial, societal and care system factors and highlighting contextual variation. This new knowledge provides the essential basis for the (now underway) development of urgently needed practical and implementable interventions for this underserved population.

Hyperparathyroidism in men - morbidity and mortality during 21 years' follow-up.

Hyperparathyroidism (HPT), including normocalcaemic, vitamin D sufficient (Serum (S)-25(OH)D ≥ 50 nmol/L) hyperparathyroidism (nHPT), has increasingly been diagnosed in the last few decades due to the more common use of the serum parathyroid hormone (S-PTH) assay. We investigated if men with HPT had higher morbidity and mortality than men without HPT during 21 years' follow-up.A random population sample of 750 men, all 50 years of age, was examined in 1993. Endpoints were retrieved 21 years later at 71 years of age.Albumin-corrected serum (S) calcium, S-25-hydroxyvitamin D and S-PTH were assessed along with data on cardiovascular risk factors and medication. Outcome data on fractures, stroke, myocardial infarction, cancer and death were retrieved in 2014; 21 years after primary assessment. The prevalence of HPT at 50 years of age was 9.3%; nHPT 2.8%, primary HPT 0.4%, secondary HPT 0.4%, and HPT with vitamin D insufficiency 6%. Fracture rate, myocardial infarction, stroke, cancer and death occurred similarly in men with or without HPT, as well as in men with nHPT as compared with men without calcium/PTH aberrations during 21 years' follow-up. S-PTH was evenly distributed in the univariable analyses for each outcome. Cox regression analyses showed no increase in serious morbidity or in mortality in men with HPT, irrespective of cause, compared with men with normal S-PTH over a 21-year period. None had HPT at a S-25(OH)D level of 100 nmol/L.

Development and randomised controlled trial of a Continence Product Patient Decision Aid for men postradical prostatectomy.

AIMS AND OBJECTIVES: To develop and evaluate an evidence-based Continence Product Patient Decision Aid (CP-PDA) to reduce decisional conflict and support continence product choice for men postradical prostatectomy. BACKGROUND: In 2018, 1.3 million men globally were diagnosed with prostate cancer. A common treatment is radical prostatectomy, usually leading to sudden onset of urinary incontinence. For people experiencing incontinence, products to contain leakage are fundamental to health-related quality of life, but many product users and healthcare professionals are unaware of available options. No evidence-based guidance on choosing products exists despite known physical and psychological burdens of poorly managed leakage (e.g. isolation, anxiety, depression, skin damage). DESIGN AND METHODS: 4 phases, underpinned by international decision aid guidance. Evidence/expert opinion: Literature review; consultation with specialist continence clinicians (n = 7) to establish evidence base. Prototype: CP-PDA developed with continence specialist (n = 7) feedback. Alpha testing (stakeholders): CP-PDA materials were provided to expert patients (n = 10) and clinicians (n = 11) to assess content/presentation. Beta testing (field) following CONSORT guidelines, registered NIHR CPMS 31077: Men (n = 50) postradical prostatectomy randomised to evaluate usability and decision-making using the Decisional Conflict Scale compared with usual care. RESULTS: An algorithm differentiating patients by mobility, dependency, cognitive impairment and type/level of leakage, leading to 12 user groups, was developed. For each group, an option table and associated product information sheets guide product choice. Total Decisional Conflict Score for men using the CP-PDA was significantly better than for men without. CP-PDA users reported greater confidence in product knowledge and choice. CONCLUSION: This is the first evidence-based CP-PDA, developed using an internationally recognised method. Compared to usual care, it significantly reduced decisional conflict for men choosing continence products postprostatectomy. RELEVANCE TO CLINICAL PRACTICE: The CP-PDA provides nurses with the first comprehensive, evidence-based intervention to help postprostatectomy men in complex continence product choices. An online version is available: www.continenceproductadvisor.org.