Effectiveness of interventions for informal caregivers of people with end-stage chronic illness: a systematic review.

BACKGROUND: People living with advanced, non-malignant chronic conditions often have extensive and complex care needs. Informal or family caregivers often provide the care and support needed by those with advanced chronic conditions at home. These informal caregivers experience many challenges associated with their caring role, which can impact their own wellbeing. Whilst there is growing evidence around the impact on carers, guidance on support for informal caregivers of patients with advanced, non-malignant, chronic conditions is lacking, with little evidence available on effective psychosocial carer interventions. This systematic review explored existing interventions for caregivers of those with advanced, non-malignant, chronic illness, in order to assess the effectiveness of these interventions in improving psychosocial outcomes. METHODS: Electronic databases, Medline, CINAHL, EMBASE, and PsycINFO, were searched up to the end of March 2023. Studies meeting the inclusion criteria, focusing on interventions to improve psychosocial outcomes, such as depression, anxiety, quality of life, and caregiver burden, in this cohort of caregivers were included. Data were extracted regarding study setting, design, methods, intervention components, and outcomes. Risk of bias and quality assessment were conducted. RESULTS: A total of 5281 articles were screened, ultimately identifying 12 studies for inclusion, reported in 13 publications. A narrative synthesis revealed mixed results. Psychosocial interventions resulted in more significant improvements in psychosocial outcomes than psychoeducational or support interventions, with interventions for carer-patient dyads also reflecting more positive outcomes for caregivers. Evidence-based interventions, guided by an appropriate theoretical model, were reportedly more effective in improving caregiver outcomes. Differences in outcomes were related to intervention development, design, delivery, and outcome assessment. CONCLUSIONS: This review, to our knowledge, is the first to explore the effectiveness of interventions in improving psychosocial outcomes for caregivers of those with advanced, non-malignant, chronic conditions. The review highlights the need for more robust, sufficiently powered, high-quality trials of evidence-based interventions for caregivers of people with advanced chronic illness. Optimal intervention duration and frequency of sessions are unclear and need further exploration.

The effect of a novel, digital physical activity and emotional well-being intervention on health-related quality of life in people with chronic kidney disease: trial design and baseline data from a multicentre prospective, wait-list randomised controlled trial (kidney BEAM).

BACKGROUND: Physical activity and emotional self-management has the potential to enhance health-related quality of life (HRQoL), but few people with chronic kidney disease (CKD) have access to resources and support. The Kidney BEAM trial aims to evaluate whether an evidence-based physical activity and emotional wellbeing self-management programme (Kidney BEAM) leads to improvements in HRQoL in people with CKD. METHODS: This was a prospective, multicentre, randomised waitlist-controlled trial, with health economic analysis and nested qualitative studies. In total, three hundred and four adults with established CKD were recruited from 11 UK kidney units. Participants were randomly assigned to the intervention (Kidney BEAM) or a wait list control group (1:1). The primary outcome was the between-group difference in Kidney Disease Quality of Life (KDQoL) mental component summary score (MCS) at 12 weeks. Secondary outcomes included the KDQoL physical component summary score, kidney-specific scores, fatigue, life participation, depression and anxiety, physical function, clinical chemistry, healthcare utilisation and harms. All outcomes were measured at baseline and 12 weeks, with long-term HRQoL and adherence also collected at six months follow-up. A nested qualitative study explored experience and impact of using Kidney BEAM. RESULTS: 340 participants were randomised to Kidney BEAM (n = 173) and waiting list (n = 167) groups. There were 96 (55%) and 89 (53%) males in the intervention and waiting list groups respectively, and the mean (SD) age was 53 (14) years in both groups. Ethnicity, body mass, CKD stage, and history of diabetes and hypertension were comparable across groups. The mean (SD) of the MCS was similar in both groups, 44.7 (10.8) and 45.9 (10.6) in the intervention and waiting list groups respectively. CONCLUSION: Results from this trial will establish whether the Kidney BEAM self management programme is a cost-effective method of enhancing mental and physical wellbeing of people with CKD. TRIAL REGISTRATION: NCT04872933. Registered 5th May 2021.

Understanding the holistic experiences of living with a kidney transplant: an interpretative phenomenological study (protocol).

BACKGROUND: Currently very little is known about the perceptions and experiences of kidney transplant recipients from a qualitative perspective. As highlighted by the European Kidney Health Alliance recommendations, providing holistic care to kidney patients is important however this is currently an unmet care need in renal disease. It is imperative to understand patient experiences to ensure that they are included in key strategies and future renal service planning. Ignoring these important patient views means that there is a significant risk of inappropriate renal service provision and lack of adequate support impacting on overall health. METHOD: A purposive sampling strategy will recruit individuals currently living with a kidney transplant, 6 months to 5 years post-transplant. A maximum of 30 patients will be recruited between two Regional Nephrology units within the United Kingdom via clinical gatekeepers. In-depth interviews will be undertaken with participants living with a kidney transplant across the two sites. Interviews will be digitally-recorded, transcribed verbatim and subjected to interpretative phenomenological analysis. DISCUSSION: Renal healthcare professionals need to understand more than the biological impact of receiving a kidney transplant. Understanding the holistic and multi-domain experiences that these patients experience will help healthcare professionals to recognize the needs of this group and ensure more responsive care.

Enabling recruitment success in bariatric surgical trials: pilot phase of the By-Band-Sleeve study.

BACKGROUND: Randomized controlled trials (RCTs) involving surgical procedures are challenging for recruitment and infrequent in the specialty of bariatrics. The pilot phase of the By-Band-Sleeve study (gastric bypass versus gastric band versus sleeve gastrectomy) provided the opportunity for an investigation of recruitment using a qualitative research integrated in trials (QuinteT) recruitment intervention (QRI). PATIENTS/METHODS: The QRI investigated recruitment in two centers in the pilot phase comparing bypass and banding, through the analysis of 12 in-depth staff interviews, 84 audio recordings of patient consultations, 19 non-participant observations of consultations and patient screening data. QRI findings were developed into a plan of action and fed back to centers to improve information provision and recruitment organization. RESULTS: Recruitment proved to be extremely difficult with only two patients recruited during the first 2 months. The pivotal issue in Center A was that an effective and established clinical service could not easily adapt to the needs of the RCT. There was little scope to present RCT details or ensure efficient eligibility assessment, and recruiters struggled to convey equipoise. Following presentation of QRI findings, recruitment in Center A increased from 9% in the first 2 months (2/22) to 40% (26/65) in the 4 months thereafter. Center B, commencing recruitment 3 months after Center A, learnt from the emerging issues in Center A and set up a special clinic for trial recruitment. The trial successfully completed pilot recruitment and progressed to the main phase across 11 centers. CONCLUSIONS: The QRI identified key issues that enabled the integration of the trial into the clinical setting. This contributed to successful recruitment in the By-Band-Sleeve trial-currently the largest in bariatric practice-and offers opportunities to optimize recruitment in other trials in bariatrics.

Tuberculous choroidal granuloma in an HIV-positive patient.

We report a case of a 34-year-old HIV-positive patient undergoing treatment for pulmonary and lymph node Mycobacterium tuberculosis infection, who developed loss of vision secondary to a tuberculous choroidal granuloma.

Mueller matrix roots algorithm and computational considerations.

Recently, an order-independent Mueller matrix decomposition was proposed in an effort to elucidate the nine depolarization degrees of freedom [Handbook of Optics, Vol. 1 of Mueller Matrices (2009)]. This paper addresses the critical computational issues involved in applying this Mueller matrix roots decomposition, along with a review of the principal matrix root and common methods for its calculation. The calculation of the pth matrix root is optimized around p = 10(5) for a 53 digit binary double precision calculation. A matrix roots algorithm is provided which incorporates these computational results. It is applied to a statistically significant number of randomly generated physical Mueller matrices in order to gain insight on the typical ranges of the depolarizing Matrix roots parameters. Computational techniques are proposed which allow singular Mueller matrices and Mueller matrices with a half-wave of retardance to be evaluated with the matrix roots decomposition.

Square-wave retarder for polarization computer-generated holography.

An etched calcite square-wave retarder is designed, fabricated, and demonstrated as an illuminator for an interlaced polarization computer-generated hologram (PCGH). The calcite square-wave retarder enables alternating columns of orthogonal linear polarizations to illuminate the interlaced PCGH. Together, these components produce a speckled, tangentially polarized PCGH diffraction pattern with a measured ratio of polarization of 84% and a degree of linear polarization of 0.81. An experimental alignment tolerance analysis is also reported.

Pregnancy in HIV-infected teenagers in London.

OBJECTIVE: The aim of the study was to describe pregnancies in HIV-infected teenagers. METHODS: A review of the case notes of HIV-infected pregnant teenagers aged 13-19 years from 12 London hospitals was carried out for the period 2000-2007. RESULTS: There were 67 pregnancies in 58 young women, of whom one was known to have acquired HIV vertically. The overall mother-to-child transmission (MTCT) rate of HIV was 1.5% (one of 66). There were 66 live births. Median ages at HIV diagnosis and conception were 17 and 18 years, respectively. Sixty-three per cent of women were diagnosed with HIV infection through routine antenatal screening. Eighty-two per cent of pregnancies (41 of 50) were unplanned, with 65% of women (26 of 40) using no contraception. Forty-three per cent of the women (20 of 46) had a past history of a sexually transmitted infection (STI). In 63 pregnancies, antiretroviral therapy was started post-conception, with prevention of HIV MTCT the only indication in 81% of cases. Fifty-eight per cent of those on highly active antiretroviral therapy (HAART) had an undetectable HIV viral load by delivery. Eighty-seven per cent were uncomplicated pregnancies. Seventy-one per cent delivered by Caesarean section and 21% (14 of 64) had a preterm delivery (<37 weeks). In the 12 months after delivery, 45% of women received contraceptive advice and 25% of women became pregnant again. CONCLUSION: Obstetric and virological outcomes were favourable in this group of HIV-infected young women. However, the majority of pregnancies were unplanned with poor documentation of contraception use and advice and low rates of STI screening. A quarter of women conceived again within 12 months of delivery. Effective measures to reduce STIs, unplanned pregnancies and onward HIV transmission in HIV-infected teenagers are needed.

A case of tension pneumothorax mimicking spontaneous rupture of the diaphragm.

A 40 year old asthmatic presented with acute respiratory distress. Chest radiograph appeared to show loops of bowel within the thorax and a diagnosis of spontaneous/effort rupture of the diaphragm was made. Emergency laparotomy revealed an intact diaphragm and chest drain was inserted relieving a tension pneumothorax.

Polarization synthesis by computer-generated holography using orthogonally polarized and correlated speckle patterns.

An interlaced polarization computer-generated hologram (PCGH) is designed to produce specific irradiance and polarization states in the image plane. The PCGH produces a tangentially polarized annular pattern with correlated speckle, which is achieved by a novel application of the diffuser optimization method. Alternating columns of orthogonal linear polarizations illuminate an interlaced PCGH, producing a ratio of polarization of 88% measured on a fabricated sample. The demonstrated technique can be applied to designs for arbitrary irradiance and polarization states in the image plane.

Partner notification in pregnant women with HIV: findings from three inner-city clinics.

British HIV Association guidelines recommend that all HIV-positive pregnant women should be encouraged to disclose their HIV infection to their partner and that this should be viewed as a process rather than an event. The aim of this study was to describe local practice of partner notification (PN) and patterns of disclosure in a group of HIV-positive women in an antenatal setting. A retrospective case note and local pregnancy database review was undertaken. Women who had accessed specialist HIV antenatal care at one of three east London hospitals with an expected delivery date between 1 March 2004 and 30 June 2006 were identified. In total, 145 women were identified. HIV status had not been disclosed to a partner in 19% (n=27) of case notes reviewed. There was no documented discussion about PN in 18% (n=26) of case notes. Forty-three per cent (n=62) of case notes documented that the male partner had accessed HIV testing after PN was discussed. All HIV-positive pregnant women should have a documented discussion about PN. Concurrent HIV testing offered to both partners may improve HIV testing uptake in male partners and should be explored further. Care plans should include screening for intimate partner violence and housing problems; referral pathways should be established clearly when involving other agencies.

Dialysis access and the impact on body image: role of the nephrology nurse.

End-stage renal disease is a chronic condition, without cure, requiring dialysis therapy to maintain life or transplantation for those fortunate enough to receive a kidney. To commence dialysis (peritoneal dialysis or haemodialysis), access is required in the form of a fistula, vascular catheter or peritoneal catheter, and changes in body image will ensue, no matter what treatment option is selected. Renal transplantation, the treatment of choice for many patients, is also associated with body image issues. Despite these problems, the role of the nurse in managing body image problems in the renal population is rarely discussed. The aim of this article is to outline the concepts of dialysis and body image, and discuss the role of the nephrology nurse at the authors' current place of work. It highlights suggestions on how renal nurses can prepare and educate patients regarding changes in body image following a diagnosis of end-stage renal disease, and emphasizes the need for future research in this area.

Antiretroviral therapy in pregnancy: local practice in East London, UK.

A review of antiretroviral prescribing, mode of delivery and pregnancy outcome was performed to assess local practice against the new British HIV Association guidelines. HIV status prior to pregnancy, antiretroviral medication, viral load, mode of delivery and pregnancy outcome were determined in 95 pregnancies recorded between 2004 and 2006 via retrospective case-note review. In total, 75% (n=71) of pregnancies resulted in live births; 56% (n=53) of pregnancies occurred in women who knew they were HIV positive prior to the current pregnancy; 49% (n=26) of them conceived on antiretroviral therapy (ART). Use of protease-inhibitor-based ART and number of normalvaginal delivery increased and the use of zidovudine (AZT) monotherapy and emergency caesarean section (CS) fell during the study period. In conclusion, there was an increase in vaginal deliveries and a reduction in the number of emergency CSs between 2004 and 2006.

Caring for people who are dying on renal wards: a retrospective study.

Unfortunately, there is still a high mortality rate among patients with end-stage renal disease (ESRD). If the decision is made to activate non-dialytic management of the patient with ESRD, it should be made jointly by the patient and responsible consultant nephrologist after consultation with relatives, the family doctor and other relevant members of the caring team. This paper discusses the establishment of a new renal supportive care service for patients opting not to have dialysis and focuses on the results of a 'death audit' carried out on this patient population. Recommendations for practice resulting from analysis of the audit results include, the use of advance directives, identification and prompt treatment of symptoms, increased staff education, timely referral to the palliative care team and expansion and further integration of the renal supportive care team.

The cessation of dialysis in patients with end-stage renal disease: developing an approppriate evidence base for practice.

Recently there has been a growing awareness that not all patients with Established Renal Failure will benefit from dialysis treatment, and it has been recognised that this patient population requires an enhanced approach to assessment and control of symptoms, as well as supportive management, including effective and high-quality palliative care. This overview of the literature examines supportive care for the patient with Established Renal Failure and how conscious decision-making in this group of patients can be best facilitated. It highlights recommendations, which have been produced to assist in the decision-making process regarding withholding and withdrawing dialysis, and is a starting point prior to establishing supportive care programmes for the renal population. Patients who decide to abstain from dialysis or for whom such a decision is made should be offered appropriate supportive and palliative care.

Chronic penile oedema secondary to chronic masturbation.

We report the case of a man with proven chlamydial conjunctivitis and urethritis who was found to have asymptomatic chronic penile oedema secondary to masturbation.