Real-life impacts of olipudase alfa: The experience of patients and families taking an enzyme replacement therapy for acid sphingomyelinase deficiency.

BACKGROUND: Acid Sphingomyelinase Deficiency (ASMD) is an ultra-rare autosomal recessive lysosomal storage disorder characterized by intracellular lipid accumulation resulting from reduced function of acid sphingomyelinase. Olipudase alfa, an enzyme replacement therapy, was recently approved in several countries for the treatment of the non-neurologic manifestations of ASMD. Studies demonstrate improvement in organomegaly, pulmonary function and lipid profiles with olipudase alfa, yet little is known about its impact on quality of life (QoL) for patients and caregivers. The purpose of this study is to better understand the real-life impact of ASMD on patients and caregivers and assess how olipudase alfa impacts QoL for pediatric patients and their caregivers. METHODS: Caregivers of pediatric patients (≤ 18 years of age) with a confirmed diagnosis of ASMD that received olipudase alfa for at least 12 months were recruited in early 2022 through national patient organizations to participate in a global online questionnaire followed by semi-structured interviews. Ten caregivers of patients with ASMD who utilized olipudase alfa as an experimental therapy for pediatric patients participated in the study. Quantitative analysis of the results was undertaken, and qualitative data was analyzed using an inductive thematic approach. RESULTS: Ten eligible participants completed questionnaires, and 8 of the 10 went on to participate in structured interviews. Symptom burden of ASMD and impact on symptomatology and quality of life after olipudase alfa use are reported here. Five themes emerged from analysis: (1) ASMD is a systemic disease with a wide array of manifestations that significantly impact QoL; (2) Olipudase alfa was associated with improvements in all non-neurologic manifestations of ASMD; (3) Participants perceived the risk associated with olipudase alfa to be low and the benefits to greatly outweigh any risk or burden; (4) Participants reported an unmet need to treat the neurologic manifestations of the disease despite the benefits of olipudase alfa in the management of non-neurological symptoms; (5) Participants felt all patients with ASMD need access to olipudase alfa based on the life-changing experience they perceived. CONCLUSIONS: These findings highlight the sustained positive impact olipudase alfa had in many domains that are deemed important to patients and families living with ASMD and outline the extensive unmet need for patients and families living with ASMD.

Impact of a mass media campaign on breast cancer symptoms awareness and screening uptake in Malaysia: findings from a quasi-experimental study.

OBJECTIVE: To evaluate the impact of a mass media campaign in terms of improving breast cancer (BC) symptoms awareness and screening uptake. DESIGN: Before-and after-study with comparator groups. SETTING: Selangor State, Malaysia. PARTICIPANTS: Malaysian women aged >40 years (n=676) from randomly selected households. INTERVENTION: A culturally adapted mass media campaign (TV, radio, print media and social media). PRIMARY AND SECONDARY OUTCOME MEASURES: The primary endpoint was BC symptoms awareness, which was assessed with the Breast Cancer Awareness Measure precampaign and postcampaign. Secondary outcomes included campaign reach, self-efficacy to notice BC symptoms and clinical outcomes. Clinical breast examination and mammogram screening data were collected from hospitals and clinics. RESULTS: Most participants recognised at least one of the campaign materials (65.2%). The odds of seeing the campaign were lowest for Chinese women (adjusted OR 0.25, 95% CI 0.15 to 0.40) compared with Malays and for women aged >70 years (adjusted OR 0.47, 95% CI 0.23 to 0.94) compared with younger women. Participants who recognised the campaign were significantly more likely to have improved awareness postcampaign compared with non-recognisers particularly for key symptoms such as 'a lump or thickening in your breast' (88.9% vs 62.1%) and 'discharge or bleeding from nipple' (79.7% vs 55.3%). Improvement in symptoms awareness scores was not associated with sociodemographic variables. CONCLUSIONS: Implementation in Malaysia of an evidence-based mass media campaign from the UK that was culturally adapted appeared to lead to improved awareness about some BC symptoms, though various modes of media communication and perhaps other health education approaches may be required to extend the reach to diverse, multiethnic populations and all age groups.

Change in public awareness of colorectal cancer symptoms following the Be Cancer Alert Campaign in the multi-ethnic population of Malaysia.

BACKGROUND: Colorectal cancer (CRC) cases are detected late in Malaysia similar to most Asian countries. The Be Cancer Alert Campaign (BCAC) was a culturally adapted mass media campaign designed to improve CRC awareness and reduce late detection in Malaysia. The evaluation of the BCAC-CRC aimed to assess campaign reach, campaign impact and health service use. METHODS: Participants aged ≥40 years (n = 730) from randomly selected households in Selangor State Malaysia, completed interview-based assessments. Campaign reach was assessed in terms of responses to an adapted questionnaire that was used in evaluations in other countries. The impact of the campaign was assessed in terms of awareness, confidence to detect symptoms and self-efficacy to discuss symptoms with a doctor as captured by the Cancer Awareness Measure (CAM). CAM was administered before-and-after campaign implementation and responses by BCAC recognisers (i.e. participants who recognised one or more of the BCAC television, radio or print advertisements when prompted) and non-recognisers (i.e. participants who did not recognise any of the BCAC advertisements) were compared analytically. Logistic regression analysed comparative differences in cancer awareness by socio-demographic characteristics and recognition of the BCAC materials. RESULTS: Over 65% of participants (n = 484) recognised the BCAC-CRC. Campaign-recognisers were significantly more likely to be aware of each CRC symptom at follow-up and were more confident about noticing symptoms (46.9% vs 34.9%, p = 0.018) compared to non-recognisers. There was no difference between groups in terms of self-efficacy to see a doctor about symptoms. Improved symptoms awareness at follow-up was lower for Indians compared to Malays (adjusted odds ratio (OR) 0.53, 95% Confidence Interval (CI): 0.34, 0.83, p = 0.005). Health service use data did not indicate an increase in screening activity during or immediately after the campaign months. CONCLUSION: Overall, the findings of the evaluation indicated that the culturally adapted, evidence-based mass media intervention improved CRC symptom awareness among the Malaysian population; and that impact is more likely when a campaign operates a differentiated approach that matches modes of communication to the ethnic and social diversity in a population.

Predictors of an early death in patients diagnosed with colon cancer: a retrospective case-control study in the UK.

OBJECTIVE: Despite considerable improvements, 5-year survival rates for colon cancer in the UK remain poor when compared with other socioeconomically similar countries. Variation in 5-year survival can be partly explained by higher rates of death within 3 months of diagnosis in the UK. This study investigated the characteristics of patients who died within 3 months of a diagnosis of colon cancer with the aim of identifying specific patient factors that can be addressed or accounted for to improve survival outcomes. DESIGN: A retrospective case-control study design was applied with matching on age, sex and year diagnosed. Patient, disease, clinical and service characteristics of patients diagnosed with colon cancer in a UK region (2005-2010) who survived less than 3 months from diagnosis (cases) were compared with patients who survived between 6 and 36 months (controls). Patient and clinical data were sourced from general practice notes and hospital databases 1-3 years prediagnosis. RESULTS: Being older (aged ≥78 years) and living in deprivation quintile 5 (OR=2.64, 95% CI 1.15 to 6.06), being unmarried and living alone (OR=1.64, 95% CI 1.07 to 2.50), being underweight compared with normal weight or obese (OR=3.99, 95% CI 1.14 to 14.0), and being older and living in a rural as opposed to urban area (OR=1.96, 95% CI 1.21 to 3.17) were all independent predictors of early death from colon cancer. Missing information was also associated with early death, including unknown stage, histological type and marital/accommodation status after accounting for other factors. CONCLUSION: Several factors typically associated with social isolation were a recurring theme in patients who died early from colon cancer. This association is unexplained by clinical or diagnostic pathway characteristics. Socially isolated patients are a key target group to improve outcomes of the worst surviving patients, but further investigation is required to determine if being isolated itself is actually a cause of early death from colon cancer.

The 'Be Cancer Alert Campaign': protocol to evaluate a mass media campaign to raise awareness about breast and colorectal cancer in Malaysia.

BACKGROUND: Breast and colorectal cancer are the two most common cancers in Malaysia. Low awareness coupled with stigma and erroneous beliefs delay help-seeking behaviours, lead to late presentation and contribute to poor detection rates. Promoting cancer awareness through mass media may be effective in improving cancer-related knowledge and uptake in screening tests. However, research is sparse regarding the cultural translation and implementation of mass media campaigns in Malaysia (and Asia) in terms of raising awareness about colorectal and breast cancer. METHODS: A collaborative partnership comprising researchers from Malaysia and the UK as well as policy makers, public health experts and non-government organisations from Malaysia was formed to design, deliver and evaluate the Be Cancer Alert Campaign. Each awareness-raising campaign will run for five weeks (Colorectal Cancer in April 2018, followed by Breast Cancer in October 2018). Evaluation of the campaigns will take place in Gombak district (Colorectal Cancer) and Petaling district (Breast Cancer) respectively, in the form of a pre-post randomly selected household survey and collection of service utilisation data. Occupants who are aged 40-years and above and are able to answer questions independently will be selected from each household. A sample of 730 with 80% power will detect a change of 6.09% in knowledge that unexplained lump or swelling is a symptom of breast cancer or changes in bowel habits is a symptom of colorectal cancer. DISCUSSION: Malaysia and most South-East Asian countries have a low middle-income economy, with limited resources for cancer control. Late-staged cancers impose a significant economic burden on patients, households, communities, employers, health systems and governments. Our proposed strategy for the implementation of the culturally sensitive mass media cancer awareness-raising campaign will serve as a blueprint for cancer prevention and control policy in South-East Asian countries where the burden of cancer is increasing and there are high cancer death rates.

Trial of infographics in Northern Ireland (TINI): Preliminary evaluation and results of a randomized controlled trial comparing infographics with text.

Infographics represent a potential means of improving public knowledge about cancer. However, there is little experimental evidence of their efficacy. This preliminary study investigates whether infographics are superior to text for the communication of information about cancer risk in old age via a three armed randomized controlled trial. Trial involved allocation concealment and block randomization of 30 male participants aged over 50 to receive text information (control) or one of two infographics (interventions). Participants who viewed an infographic were more likely to know the correct association between cancer risk and old age compared with those viewing text information (risk ratio = 3.0, 95% confidence interval 0.82-10.90). Participants had limited understanding of the phrases "cancer incidence" and "cancer prevalence" but good understanding of the phrases "cancer risk factor" and "cancer stage." Possession of good numerical skills appears to be a key determinant of ability to extract meaning from statistical information provided; regardless of format. Initial results suggest icon array infographics may be more effective communication mediums than text but further study with more participants and an updated infographic is necessary to confirm this finding. TRIAL REGISTRATION NUMBER: ISRCTN33951209.

Urinary, bowel and sexual health in older men from Northern Ireland.

OBJECTIVES: To provide data on the prevalence of urinary, bowel and sexual dysfunction in Northern Ireland (NI), to act as a baseline for studies of prostate cancer outcomes and to aid service provision within the general population. SUBJECTS AND METHODS: A cross-sectional postal survey of 10 000 men aged ≥40 years in NI was conducted and age-matched to the distribution of men living with prostate cancer. The EuroQoL five Dimensions five Levels (EQ-5D-5L) and 26-item Expanded Prostate Cancer Composite (EPIC-26) instruments were used to enable comparisons with prostate cancer outcome studies. Whilst representative of the prostate cancer survivor population, the age-distribution of the sample differs from the general population, thus data were generalised to the NI population by excluding those aged 40-59 years and applying survey weights. Results are presented as proportions reporting problems along with mean composite scores, with differences by respondent characteristics assessed using chi-squared tests, analysis of variance, and multivariable log-linear regression. RESULTS: Amongst men aged ≥60 years, 32.8% reported sexual dysfunction, 9.3% urinary dysfunction, and 6.5% bowel dysfunction. In all, 38.1% reported at least one problem and 2.1% all three. Worse outcome was associated with increasing number of long-term conditions, low physical activity, and higher body mass index (BMI). Urinary incontinence, urinary irritation/obstruction, and sexual dysfunction increased with age; whilst urinary incontinence, bowel, and sexual dysfunction were more common among the unemployed. CONCLUSION: These data provide an insight into sensitive issues seldom reported by elderly men, which result in poor general health, but could be addressed given adequate service provision. The relationship between these problems, raised BMI and low physical activity offers the prospect of additional health gain by addressing public health issues such as obesity. The results provide essential contemporary population data against which outcomes for those living with prostate cancer can be compared. They will facilitate greater understanding of the true impact of specific treatments such as surgical interventions, pelvic radiation or androgen-deprivation therapy.

Investigation of the international comparability of population-based routine hospital data set derived comorbidity scores for patients with lung cancer.

INTRODUCTION: The International Cancer Benchmarking Partnership (ICBP) identified significant international differences in lung cancer survival. Differing levels of comorbid disease across ICBP countries has been suggested as a potential explanation of this variation but, to date, no studies have quantified its impact. This study investigated whether comparable, robust comorbidity scores can be derived from the different routine population-based cancer data sets available in the ICBP jurisdictions and, if so, use them to quantify international variation in comorbidity and determine its influence on outcome. METHODS: Linked population-based lung cancer registry and hospital discharge data sets were acquired from nine ICBP jurisdictions in Australia, Canada, Norway and the UK providing a study population of 233 981 individuals. For each person in this cohort Charlson, Elixhauser and inpatient bed day Comorbidity Scores were derived relating to the 4-36 months prior to their lung cancer diagnosis. The scores were then compared to assess their validity and feasibility of use in international survival comparisons. RESULTS: It was feasible to generate the three comorbidity scores for each jurisdiction, which were found to have good content, face and concurrent validity. Predictive validity was limited and there was evidence that the reliability was questionable. CONCLUSION: The results presented here indicate that interjurisdictional comparability of recorded comorbidity was limited due to probable differences in coding and hospital admission practices in each area. Before the contribution of comorbidity on international differences in cancer survival can be investigated an internationally harmonised comorbidity index is required.

Insights into the factors associated with achieving the preference of home death in terminal cancer: A national population-based study.

ABSTRACTObjectives:Most terminally ill cancer patients prefer to die at home, yet only a minority are able to achieve this. Our aim was to investigate the factors associated with cancer patients achieving their preference to die at home. METHODS: This study took the form of a mortality followback, population-based, observational survey of the relatives of deceased cancer patients in Northern Ireland. Individuals who registered the death of a friend or relative (aged ≥ 18 years) between 1 December 2011 and 31 May 2012, where the primary cause of death was cancer (ICD10: C00-D48), who were invited to take part. Preferred and actual place of death, and patient, service, and clinical data were collected using the QUALYCARE postal questionnaire. Multivariable logistic regression was employed to investigate the factors associated with achieving a home death when preferred. RESULTS: Some 467 of 1,493 invited informants completed the survey. The 362 (77.5%) who expressed a preference for dying at home and spent time at home in their final 3 months were included in our analysis. Of these, 53.4% achieved their preference of a home death. Factors positively associated with achieving a home death were: living in an affluent area, receipt of good and satisfactory district nurse care, discussing place of death with health professionals, and the caregiver's preference for a home death. Being older than 80 years of age, being a Presbyterian, and being unconscious most of the time during their final week were negatively associated with achieving a home death. SIGNIFICANCE OF RESULTS: Communication, care satisfaction, and caregiver preferences were all associated with home death. Our findings will help inform the design of future interventions aimed at increasing the proportion of patients achieving their preferred place of death at home, for example, by targeting interventions toward older patients and those from the most deprived communities.

Do perceived barriers to clinical presentation affect anticipated time to presenting with cancer symptoms: an ICBP study.

Background: Cancer survival in the UK and Denmark are lower when compared with similar countries with late diagnosis a possible cause. We aimed to study the relationship between barriers to attending a primary care physician (GP) and anticipated time to help seeking (ATHS) with four cancer symptoms in six countries. Methods: A population-based survey measuring cancer awareness and beliefs conducted within the International Cancer Benchmarking Partnership in Australia, Canada, Denmark, Norway, Sweden and UK. Data were collected on perceived barriers to GP consultation (including embarrassment, worry about wasting the doctors' time, fear about what the doctor might find and being too busy) and ATHS for persistent cough, abdominal swelling, rectal bleeding and breast changes. Relationships between perceived barriers and ATHS were investigated using multivariable analysis. Results: Among 19 079 respondents, higher perceived barrier scores were associated with longer ATHS intervals for all symptoms studied (P < 0.01) responders with the highest barrier scores (>10.84) had between two and three times the odds of longer ATHS. ATHS was low in Australia for all symptoms and highest in Denmark for abdominal bloating. Conclusions: Perceived barriers to help-seeking have a role in delaying GP presentation. Early diagnosis campaigns should address emotional and practical barriers that reduce early presentation with potential cancer symptoms.

Knowledge or noise? Making sense of General Practitioners' and Consultant use of 2-week-wait referrals for suspected cancer.

BACKGROUND: Early diagnosis and treatment of cancer is the goal of the 2-week-wait referral pathway (2WW). Variation exists between General Practice use of 2WW and rates of consultant reprioritisation of GP referral from routine to 2WW (Consultant Upgrade). We investigated variation in General Practice and Consultant Upgrade 2WW referral activity. METHODS: Data from 185 000 referrals and 29 000 cancers recorded between 2011 and 2013 from the Northern Ireland Cancer Waiting Time database (CaPPS) were analysed to ascertain standardised referral rate ratios, detection rate (DR) (=sensitivity) and conversion rate (CR) (=positive predictive value) for Practice 2WW referrals and Consultant Upgrade 2WW. Metrics were compared using Spearman's rank correlation co-efficients. RESULTS: There was consistency in Practice and Consultant Upgrade 2WW referral rates over time, though not for annual DR (Spearman's ρ<0.37) or CR (Spearman's ρ<0.26). Practice 2WW referral rates correlated negatively with CR and positively with DR while correlations between DR and CR were restricted to single-year comparisons in Practice 2WW. In Consultant Upgrade, 2WW CR and DR were strongly correlated but only when the same cancers were included in both rates. CONCLUSIONS: Results suggest 'random case mix' explains previously reported associations between CR and DR with more 'hard to detect' cancers in some Practices than in others in a given year corresponding to lower DR and CR. Use of Practice and Consultant Upgrade 2WW referral metrics to gauge General Practice performance may be misleading.

The completeness and timeliness of cancer registration and the implications for measuring cancer burden.

BACKGROUND: Population based cancer registration provides a critical role in disease surveillance in terms of incidence, survival, cancer cluster investigations and prevalence trends, and therefore high levels of completeness and timeliness are required. This study estimates completeness and variation between early and late registrations in the N. Ireland Cancer Registry (NICR) and assesses the implications for reporting cancer incidence and for registry-based research. METHODS: Two main approaches assessed completeness. For the period 2010-2012, incidence reported in the first year of data publication was compared to incidence reported in subsequent years until 2015. Demographic characteristics and survival of incident cases ascertained before the first publication year were compared to those ascertained in subsequent years. The flow method approach was used to estimate completeness annually after the incident year. RESULTS: Overall incidence for all cancers increased between the first year of data publication and subsequent years up to 2015, irrespective of year of diagnosis. Late registrations had poorer survival. The flow method approach estimated the completeness of case ascertainment of NICR data to be 96% complete at five years for all cancers combined. CONCLUSION: The estimated completeness levels for the NICR are comparable to other high quality cancer registries internationally. While data timeliness has little impact on incidence estimates, delays in registration may have implications for specific research studies into incidence and survival. This means that improvements in the timeliness of reporting should be a target for all registries but not at the expense of completeness.

A population-level investigation of cancer clinical trials participation in a UK region.

The aim of this study was to document cancer trial participation since establishment of the Northern Ireland Cancer Trials Network and investigate population and disease factors associated with trial participation. An independent cohort of over 51 000 cancer patients from the Northern Ireland Cancer Registry covering the same population (2007-2012) was linked to a database of 1316 interventional cancer trial participants in a UK region. The primary outcome measure was participation in an intervention clinical trial. Patients were followed up until 31 March 2013. Kaplan-Meier tests and Cox proportional hazard models using person days at risk to allow for death were used to investigate factors associated with trial participation. Multivariate analysis assessed the impact of age, cancer type and stage, distance from the cancer centre (radiotherapy), marital status, deprivation quintile and rurality. Participation was analysed separately for children (<15 years) and young individuals (15-24 years). Trial recruitment increased three-fold with establishment of a network. Participation was the highest for children at 21%, but relatively low at 2.05% for adults, although higher for haematological malignancies (4.5%). Lower likelihood of trial participation in adults was associated with female sex, older age, distance from regional Cancer Centre and stage 1 disease. The introduction of a regional Cancer Trials Network was associated with increased participation; however, trial participation remains relatively low at the population level especially among elderly patients. Linkage of clinical trials and cancer registry database provide an easy mechanism to monitor trial representativeness at the population level.

Bereavement outcomes: A quantitative survey identifying risk factors in informal carers bereaved through cancer.

BACKGROUND: Enabling patients to die in their preferred place is important but achieving preferred place of death may increase the informal carer's risk into bereavement. AIM: To determine risk factors of family carers bereaved through cancer in Northern Ireland. DESIGN: These results form part of a larger QUALYCARE-NI study which used postal questionnaires to capture quantitative data on carer's bereavement scores using the Texas Revised Inventory of Grief. SETTING/PARTICIPANTS: Participants were individuals who registered the death of a person between 1 December 2011 and 31 May 2012; where cancer (defined by ICD10 codes C00-D48) was the primary cause; where the deceased was over 18 years of age and death occurred at home, hospice, nursing home or hospital in Northern Ireland. Participants were approached in confidence by the Demography and Methodology Branch of the Northern Ireland Statistics and Research Agency. Those wishing to decline participation were invited to return the reply slip. Non-responders received a second questionnaire 6 weeks after initial invitation. Results indicated that risk factors positively influencing bereavement outcomes included patients having no preference for place of death and carers remaining in employment pre- or post-bereavement. In contrast, patients dying in hospital, carers stopping work, being of lower socio-economic status and close kinship to the deceased negatively affected bereavement scores. Family carers should be adequately supported to continue in employment; priority should be given to assessing the financial needs of families from lower socio-economic areas; and bereavement support should focus on close relatives of the deceased.

Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study.

BACKGROUND: Prostate cancer and its treatment may impact physically, psychologically and socially; affecting the health-related quality of life of men and their partners/spouses. The Life After Prostate Cancer Diagnosis (LAPCD) study is a UK-wide patient-reported outcomes study which will generate information to improve the health and well-being of men with prostate cancer. METHODS AND ANALYSIS: Postal surveys will be sent to prostate cancer survivors (18-42 months postdiagnosis) in all 4 UK countries (n=∼70 000). Eligible men will be identified and/or verified through cancer registration systems. Men will be surveyed twice, 12 months apart, to explore changes in outcomes over time. Second, separate cohorts will be surveyed once and the design will include evaluation of the acceptability of online survey tools. A comprehensive patient-reported outcome measure has been developed using generic and specific instruments with proven psychometric properties and relevance in national and international studies. The outcome data will be linked with administrative health data (eg, treatment information from hospital data). To ensure detailed understanding of issues of importance, qualitative interviews will be undertaken with a sample of men who complete the survey across the UK (n=∼150) along with a small number of partners/spouses (n=∼30). ETHICS AND DISSEMINATION: The study has received the following approvals: Newcastle and North Tyneside 1 Research Ethics Committee (15/NE/0036), Health Research Authority Confidentiality Advisory Group (15/CAG/0110), NHS Scotland Public Benefit and Privacy Panel (0516-0364), Office of Research Ethics Northern Ireland (16/NI/0073) and NHS R&D approval from Wales, Scotland and Northern Ireland. Using traditional and innovative methods, the results will be made available to men and their partners/spouses, the funders, the NHS, social care, voluntary sector organisations and other researchers.

Effect of investigation intensity and treatment differences on prostate cancer survivor's physical symptoms, psychological well-being and health-related quality of life: a two country cross-sectional study.

AIM: To investigate effects on men's health and well-being of higher prostate cancer (PCa) investigation and treatment levels in similar populations. PARTICIPANTS: PCa survivors in Ireland where the Republic of Ireland (RoI) has a 50% higher PCa incidence than Northern Ireland (NI). METHOD: A cross-sectional postal questionnaire was sent to PCa survivors 2-18 years post-treatment, seeking information about current physical effects of treatment, health-related quality of life (HRQoL; EORTC QLQ-C30; EQ-5D-5L) and psychological well-being (21 question version of the Depression, Anxiety and Stress Scale, DASS-21). Outcomes in RoI and NI survivors were compared, stratifying into 'late disease' (stage III/IV and any Gleason grade (GG) at diagnosis) and 'early disease' (stage I/II and GG 2-7). Responses were weighted by age, jurisdiction and time since diagnosis. Between-country differences were investigated using multivariate logistic and linear regression. RESULTS: 3348 men responded (RoI n=2567; NI n=781; reflecting population sizes, response rate 54%). RoI responders were younger; less often had comorbidities (45% vs 38%); were more likely to present asymptomatically (66%; 41%) or with early disease (56%; 35%); and less often currently used androgen deprivation therapy (ADT; 2%; 28%). Current prevalence of incontinence (16%) and impotence (56% early disease, 67% late disease) did not differ between RoI and NI. In early disease, only current bowel problems (RoI 12%; NI 21%) differed significantly in multivariate analysis. In late disease, NI men reported significantly higher levels of gynaecomastia (23% vs 9%) and hot flashes(41% vs 19%), but when ADT users were analysed separately, differences disappeared. For HRQoL, in multivariate analysis, only pain (early disease: RoI 11.1, NI 19.4) and financial difficulties (late disease: RoI 10.4, NI 7.9) differed significantly between countries. There were no significant between-country differences in DASS-21 or index ED-5D-5L score. CONCLUSIONS: Treatment side effects were commonly reported and increased PCa detection in RoI has left more men with these side effects. We recommended that men be offered a PSA test only after informed discussion.

Awareness of sunburn in childhood, use of sunbeds and change of moles in Denmark, Northern Ireland, Norway and Sweden.

BACKGROUND: Malignant melanoma (MM) is increasing rapidly in Northern Europe. To reduce incidence and mortality through earlier diagnosis, public awareness of MM is important. Thus, we aim to examine awareness of risk factors and a symptom of MM, and how awareness varies by country and socio-demographic factors in Denmark, Northern Ireland (NI), Norway and Sweden. METHODS: Population-based telephone interviews using the 'Awareness and Beliefs about Cancer' measure were conducted in 2011 among 8355 adults ≥50 years as part of the International Cancer Benchmarking Partnership Module 2. Prevalence ratios (PRs) with 95% confidence intervals were calculated. RESULTS: In these four countries, lowest awareness was found for 'sunburn in childhood' (63%), whereas awareness was high for 'use of sunbeds' (91%) and 'mole change' (97%). Lack of awareness of 'sunburn in childhood' was more prevalent among respondents from Norway [PR = 1.38 (1.28-1.48)] but less prevalent among respondents from Northern Ireland (NI) [PR = 0.78 (0.72-0.85)] and Sweden [PR = 0.86 (0.79-0.93)] compared with respondents from Denmark. Lack of awareness of 'use of sunbeds' was more prevalent among respondents from Norway [PR = 2.99 (2.39-3.74)], Sweden [PR = 1.57 (1.22-2.00)], and NI [PR = 1.65 (1.30-2.10)] compared with respondents form Denmark. Being a man, age ≥70, living alone, and having lower education, were each independently associated with lack of MM-awareness. CONCLUSIONS: The results indicate relatively low awareness of 'sunburn in childhood' as a risk factor for MM, and important disparities in MM-awareness across countries and socio-demographic groups. Improved and more directed initiatives to enhance public MM-awareness, particularly about 'sunburn in childhood', are needed.

Patient-reported 'ever had' and 'current' long-term physical symptoms after prostate cancer treatments.

OBJECTIVE: To investigate the prevalence of physical symptoms that were 'ever' and 'currently' experienced by survivors of prostate cancer at a population level, to assess burden and thus inform policy to support survivors. PATIENTS AND METHODS: The study included 3 348 men surviving prostate cancer for 2-18 years after diagnosis. A cross-sectional, postal survey of 6 559 survivors diagnosed 2-18 years ago with primary, invasive prostate cancer (ICD10-C61) identified via national, population-based cancer registries in Northern Ireland and Republic of Ireland. Questions included symptoms at diagnosis, primary treatments and physical symptoms (erectile dysfunction [ED]/urinary incontinence [UI]/bowel problems/breast changes/loss of libido/hot flashes/fatigue) experienced 'ever' and at questionnaire completion ('current'). Symptom proportions were weighted by age, country and time since diagnosis. Bonferroni corrections were applied for multiple comparisons. RESULTS: Adjusted response rate 54%; 75% reported at least one 'current' physical symptom ('ever' 90%), with 29% reporting at least three. Prevalence varied by treatment. Overall, 57% reported current ED and this was highest after radical prostatectomy (RP, 76%) followed by external beam radiotherapy with concurrent hormone therapy (HT, 64%). UI (overall 'current' 16%) was highest after RP ('current' 28%; 'ever' 70%). While 42% of brachytherapy patients reported no 'current' symptoms, 43% reported 'current' ED and 8% 'current' UI. 'Current' hot flashes (41%), breast changes (18%) and fatigue (28%) were reported more often by patients on HT. CONCLUSION: Symptoms after prostate cancer treatment are common, often multiple, persist long-term and vary by treatment method. They represent a significant health burden. An estimated 1.6% of men aged >45 years are survivors of prostate cancer and currently experiencing an adverse physical symptom. Recognition and treatment of physical symptoms should be prioritised in patient follow-up. This information should facilitate men and clinicians when deciding about treatment as differences in survival between radical treatments is minimal.

Trends in skin cancer knowledge, sun protection practices and behaviours in the Northern Ireland population.

BACKGROUND: Sun exposure increases risk of skin cancer, especially melanoma, incidence of which continues to rise. Reported skin cancer knowledge and trends in sun care behaviours are documented in a UK region where there has been 20 years of sun-related health promotion campaigns. METHODS: In 2000, 2004 and 2008, a 'care in the sun' module was included in the Northern Ireland (NI) Omnibus survey. Randomly selected subjects were asked to complete a sun-related questionnaire and proportions of respondents analysed by demographic and socio-economic factors, with differences tested using z-tests and the chi-squared test. RESULTS: Around 3623 persons responded. Skin cancer knowledge was high (97%). Sun avoidance decreased with time and was lowest among younger age groups and males. Sunscreen use was high (70%), unchanged over 8 years, and more likely among younger age groups, females, those in paid employment, and those with tertiary level education. Use of sunscreen with minimum Sun Protection Factor (SPF) 15 (a campaign message) increased from 45% to 70% (P < 0.01). Skin self-examination was infrequent (8%), less common among those aged ≥65 years, males and those with only primary or secondary level education. CONCLUSIONS: Messages on sunscreen use have penetrated the population well, but lower use among the unemployed suggests cost as an issue. Lack of sun avoidance in young people, especially men, poses a risk for further skin cancer increases. Low levels of reported skin self-examination in older people, men and those with lower educational attainment identify areas for further action.