Clare Bradley

Objective: The Cancer Dependent Quality of Life (CancerDQoL) questionnaire asks about the impact of cancer and its treatment on individuals' quality of life (QoL). This study evaluates the psychometric properties of the CancerDQoL in a UK sample.Methods: Patients (n = 159) with a range of cancers, recruited from Barts Health NHS Trust and Barts Maggie's Centre, completed self‐administered questionnaires: CancerDQoL, EQ‐5D‐VAS (health status), EORTC‐QLQ‐C30 (predominantly health symptoms/functioning) and W‐BQ16 (well‐being). Based on the pre‐existing –DQoL template and Item Library (Bradley), the CancerDQoL includes 23 cancer‐specific life‐domain items and four overview items.Results: Exploratory factor analysis revealed a 22‐item, single‐factor solution. Internal consistency was excellent (α = 0.94). Cancer negatively impacted all life domains: ‘feelings about future’ had the most negative mean weighted (by importance) impact (WI) score. ‘Physical abilities’ WI scores were ranked 12th. CancerDQoL Average Weighted Impact (AWI) scores were more strongly correlated with the Cancer‐dependent QoL overview item than with the General QoL or General Health overview items. As expected, the EQ‐5D‐VAS and EORTC‐QLQ‐C30 correlated together more strongly than with CancerDQoL AWI scores.Conclusions: The CancerDQoL is the first individualised questionnaire measuring the impact of cancer and its treatment on QoL. The CancerDQoL AWI score is related to, but different from, measures of health status/functioning and well‐being. Eleven CancerDQoL life‐domains were more negatively impacted/important than physical abilities which is a major focus of the EQ‐5D and EORTC‐QLQ‐C30. By revealing aspects of life most impacted by cancer and its treatment, efforts can be prioritised to improve QoL for people with cancer.

Aim To design an individualised questionnaire to measure the impact of cancer and its treatments on quality of life (QoL). Materials & Methods Design of the Cancer-Dependent Quality of Life (CancerDQoL) questionnaire was based on the Audit of Diabetes Dependent QoL (ADDQoL) questionnaire and related –DQoLs for other conditions. Item selection, face validity and content validity were established through clinician and patient ratings of the importance and relevance of 60 domains from the –DQoL Item Library, and semi-structured interviews with 25 English-speaking participants with a range of cancers attending a cancer centre in Zimbabwe (age range: 25-78 years; 16 women, 9 men). Ten interviews were subsequently conducted with UK English-speaking participants with a range of cancers attending Maggie’s Centres in London and Dundee (age range: 40-76; 5 women, 5 men) to adapt the CancerDQoL for UK use. Results The first draft of the CancerDQoL contained 25 domain-specific items from the -DQoL Item Library plus four overview items. Zimbabwean participants indicated that cancer negatively impacted on all life domains included, except ‘having children’. Weighted impact (impact ratings multiplied by importance) was most negative for ‘sex life’, ‘depend on others’ and ‘physical capability’. The least negative weighted impact was found for ‘having children’, ‘spiritual/religious life’ and ‘past medical/self-care’. UK interviews confirmed no new items were required. Conclusions Face and content validity of the CancerDQoL is established for an adult sample of English-speaking cancer patients in Zimbabwe and confirmed in an adaptation following UK interviews.

Objective To examine quality of life (QoL) and other patient-reported outcome measures (PROMs) in kidney transplant recipients and those awaiting transplantation. Design Longitudinal cohort questionnaire surveys and qualitative semi-structured interviews using thematic analysis with a pragmatic approach. Setting Completion of generic and disease-specific PROMs at two time points, and telephone interviews with participants UK-wide. Participants 101 incident deceased-donor (DD) and 94 incident living-donor (LD) kidney transplant recipients, together with 165 patients on the waiting list (WL) from 18 UK centres recruited to the Access to Transplantation and Transplant Outcome Measures (ATTOM) programme completed PROMs at recruitment (November 2011 to March 2013) and 1 year follow-up. Forty-one of the 165 patients on the WL received a DD transplant and 26 received a LD transplant during the study period, completing PROMs initially as patients on the WL, and again 1 year post-transplant. A subsample of 10 LD and 10 DD recipients participated in qualitative semi-structured interviews. Results LD recipients were younger, had more educational qualifications and more often received a transplant before dialysis. Controlling for these and other factors, cross-sectional analyses at 12 months post-transplant suggested better QoL, renal-dependent QoL and treatment satisfaction for LD than DD recipients. Patients on the WL reported worse outcomes compared with both transplant groups. However, longitudinal analyses (controlling for pre-transplant differences) showed that LD and DD recipients reported similarly improved health status and renal-dependent QoL (pConclusions While cross-sectional analyses suggested LD kidney transplantation leads to better QoL and treatment satisfaction, longitudinal assessment showed similar QoL improvements in PROMs for both transplant groups, with better outcomes than for those still wait-listed. Regardless of transplant type, clinicians need to be aware that managing expectations is important for facilitating patients’ adjustment post-transplant.

We examined quality of life (QoL) and other patient‐reported outcome measures (PROMs) in 95 Simultaneous Pancreas and Kidney Transplant (SPKT) recipients and 41 patients wait‐listed for SPKT recruited to the UK Access to Transplantation and Transplant Outcome Measures (ATTOM) programme. Wait‐listed patients transplanted within 12 months of recruitment (n =22) were followed 12‐months post‐transplant and compared with those still wait‐listed (n =19) to examine pre‐to‐post‐transplant changes. Qualitative interviews with ten SPKT recipients 12‐months post‐transplant were analysed thematically. Cross‐sectional analyses showed several better 12‐month outcomes for SPKT recipients compared with those still wait‐listed, a trend to better health utilities but no difference in diabetes‐specific QoL or diabetes treatment satisfaction. Pre‐ to post‐transplant, SPKT recipients showed improved treatment satisfaction, well‐being, self‐reported health, generic QoL and less negative impact on renal‐specific QoL (ps <0.05). Health‐utility values were better overall in transplant recipients and neither these nor diabetes‐specific QoL changed significantly in either group. Pre‐emptive transplant advantages seen in 12‐month cross‐sectional analyses disappeared when controlling for baseline values. Qualitative findings indicated diabetes complications, self‐imposed blood‐glucose monitoring and dietary restrictions continued to impact QoL negatively post‐transplant. Unrealistic expectations of SPKT caused some disappointment. Measuring condition‐specific PROMs over time will help in demonstrating the benefits and limitations of SPKT.

Background.: Comorbidity is increasingly common in kidney transplant recipients, yet the implications for transplant outcomes are not fully understood. We analyzed the relationship between recipient comorbidity and survival outcomes in a UK-wide prospective cohort study—Access to Transplantation and Transplant Outcome Measures (ATTOM). Methods.: A total of 2100 adult kidney transplant recipients were recruited from all 23 UK transplant centers between 2011 and 2013. Data on 15 comorbidities were collected at the time of transplantation. Multivariable Cox regression models were used to analyze the relationship between comorbidity and 2-year graft survival, patient survival, and transplant survival (earliest of graft failure or patient death) for deceased-donor kidney transplant (DDKT) recipients (n = 1288) and living-donor kidney transplant (LDKT) recipients (n = 812). Results.: For DDKT recipients, peripheral vascular disease (hazard ratio [HR] 3.04, 95% confidence interval [CI]: 1.37-6.74; P = 0.006) and obesity (HR 2.27, 95% CI: 1.27-4.06; P = 0.006) were independent risk factors for graft loss, while heart failure (HR 3.77, 95% CI: 1.79-7.95; P = 0.0005), cerebrovascular disease (HR 3.45, 95% CI: 1.72-6.92; P = 0.0005), and chronic liver disease (HR 4.36, 95% CI: 1.29-14.71; P = 0.018) were associated with an increased risk of mortality. For LDKT recipients, heart failure (HR 3.83, 95% CI: 1.15-12.81; P = 0.029) and diabetes (HR 2.23, 95% CI: 1.03-4.81; P = 0.042) were associated with poorer transplant survival. Conclusions.: The key comorbidities that predict poorer 2-year survival outcomes after kidney transplantation have been identified in this large prospective cohort study. The findings will facilitate assessment of individual patient risks and evidence-based decision making.

Visual hallucinations are common in older people and are especially associated with ophthalmological and neurological disorders, including dementia and Parkinson’s disease. Uncertainties remain whether there is a single underlying mechanism for visual hallucinations or they have different disease-dependent causes. However, irrespective of mechanism, visual hallucinations are difficult to treat. The National Institute for Health Research (NIHR) funded a research programme to investigate visual hallucinations in the key and high burden areas of eye disease, dementia and Parkinson’s disease, culminating in a workshop to develop a unified framework for their clinical management. Here we summarise the evidence base, current practice and consensus guidelines that emerged from the workshop.Irrespective of clinical condition, case ascertainment strategies are required to overcome reporting stigma. Once hallucinations are identified, physical, cognitive and ophthalmological health should be reviewed, with education and self-help techniques provided. Not all hallucinations require intervention but for those that are clinically significant, current evidence supports pharmacological modification of cholinergic, GABAergic, serotonergic or dopaminergic systems, or reduction of cortical excitability. A broad treatment perspective is needed, including carer support. Despite their frequency and clinical significance, there is a paucity of randomised, placebo-controlled clinical trial evidence where the primary outcome is an improvement in visual hallucinations. Key areas for future research include the development of valid and reliable assessment tools for use in mechanistic studies and clinical trials, transdiagnostic studies of shared and distinct mechanisms and when and how to treat visual hallucinations.