Olinda Santin

A comparative analysis of the health and well-being of cancer survivors to the general population

BackgroundThe population of people surviving cancer is continually increasing and currently cancer survivors represent approximately 3.7% of the American population and 3% of the UK population. There is limited and inconclusive empirical evidence regarding the long-term health and well-being of cancer survivors.MethodsTwo hundred eighty-nine cancer survivors and 262 matched-age and sex patients from the same group of General (primary care) Practices completed postal questionnaires measuring health and well-being, health service utilisation and satisfaction and health care needs.Main ResultsCancer survivors reported poorer health and well-being and health service utilisation than the general population. Despite this poorer health, the majority of cancer survivors reported satisfaction with services and almost two-thirds of the survivors did not report any needs.ConclusionsThe majority of cancer survivors do not appear to require additional support services. There is, however, a subgroup of survivors who warrant specialist support, particularly survivors who are older, experience late effects and have had adjuvant treatments. Future research should focus on developing methods that could be used in routine clinical practice to identify ‘at risk’ or vulnerable patients and to provide appropriate and timely support.

Cancer survivors with self-reported late effects: their health status, care needs and service utilisation

Cancer survivors (CSs) are at risk of developing late effects (LEs) associated with the disease and its treatment. This paper compares the health status, care needs and use of health services by CSs with LEs and CSs without LEs.

Self-reported psychosocial needs and health-related quality of life of colorectal cancer survivors

PURPOSE OF THE RESEARCH To investigate the prevalence and nature of unmet needs among colorectal cancer (CRC) survivors and the relationship between needs and quality of life (QoL). METHODS AND SAMPLE Using the Northern Ireland Cancer Registry (NICR) as a sampling frame and working in collaboration with primary care physicians or GPs, the Cancer Survivors Unmet Needs (CaSUN) questionnaire and the Quality of Life in Adult Cancer Survivors Scale (QLACS) were posted to a randomly selected sample of 600 CRC survivors. KEY RESULTS Approximately 69% (413/600) met eligibility criteria for participating in the study; and 30% (124/413) responded to the survey. A comparative analysis of NICR data between respondents and non-respondents did not indicate any systematic bias except that respondents appeared to be younger (65 years vs. 67 years). Approximately 60% of respondents reported having no unmet needs, with 40% reporting one or more unmet health and social care needs such as fear of recurrence, information needs, difficulty obtaining travel insurance and car parking problems. QoL was significantly lower for CRC survivors who reported an unmet need. Highest scores (poorer QoL) were reported for fatigue, welfare benefits and distress recurrence. CONCLUSIONS Overall, the majority of CRC survivors who had care needs appeared to have needs that were mainly psychosocial in nature and these unmet needs were related to poorer QoL.

Assessing the needs of informal caregivers to cancer survivors: a review of the instruments

Cancer may impact negatively on an informal caregivers health long after treatment has ended. This review identifies the self‐report measures currently in use to measure caregivers need for support and determines their scientific soundness and clinical utility.

Active surveillance for favorable-risk prostate cancer: Is there a greater psychological impact than previously thought? A systematic, mixed studies literature review.

Active surveillance (AS) allows men with favorable‐risk prostate cancer to avoid or postpone active treatment and hence spares potential adverse effects for a significant proportion of these patients. Active surveillance may create an additional emotional burden for these patients.

Cancer and serious mental illness – patient, caregiver and professional perspectives: study protocol

AIM To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and healthcare professionals involved in their care. BACKGROUND Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals and there is little evidence regarding the experiences of patients and caregivers. DESIGN A qualitative exploration using approximately 36 semi-structured interviews. METHODS Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. DISCUSSION There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care.

HPV vaccine acceptance in male adolescents

Human papillomavirus (HPV) is one of the most common sexually transmitted infections worldwide [1]. It is so common that nearly all sexually active men and women will be exposed to it at some point in their lives. HPV can be passed from one person to another even when there are no visible signs and symptoms. Most people are able to clear the infection themselves with no lasting harm, but for some the virus persists and can lead to a number of health problems. HPV infection is well-recognised as a causative agent in cervical cancer, but it is also associated with other anogenital tumours, oropharyngeal cancers and genital warts, meaning that it also has serious health consequences in men and women [2]. Despite HPV’s impact on the health of both sexes, only the USA, Australia, Austria, Israel and two Canadian provinces currently recommend a gender neutral vaccination. Switzerland has recently made a recommendation that the vaccine should be ‘gender neutral’ and is currently considering offering the vaccine to both sexes. Despite this, there is substantial debate around the inclusion of men in HPV vaccination programmes. Many European countries do not include men and focus on achieving a high coverage in women to promote herd protection, that is, a reduction in the risk of infection in men due to reduced exposure as a result of vaccination in women. There is some emerging evidence that this is the case; an analysis of female only vaccination programmes in nine countries with high female vaccination rates found a reduction in the number of boys with genital warts of around one-third [3]. The incremental benefit of extending the vaccine to men is indeed highly dependent on coverage in women. With a low uptake in girls, the benefit of vaccinating boys is easily demonstrated. With more than 70% uptake in women, the gender neutral vaccine appears less cost-effective; however, a European study assessing the benefit of male vaccination in all carcinomas that have an established causal link with HPV demonstrated that the vaccination of 12-year-old boys and girls would be associated with substantial additional clinical benefits in terms of reduced incidence of HPV-related genital warts and carcinomas versus a girls only vaccination [4], this additional benefit was noted even with a high vaccine uptake. A female only vaccination strategy does however leave a number of men vulnerable to HPV infection, particularly men who have sex with other men (MSM) and men who have sex with unvaccinated women. A proposed solution could be to offer the vaccine to MSM at a sexual health clinic; however, for the HPV vaccine to be most effective, it should be given in adolescence, before exposure to HPV through sexual contact. Data on immunogenicity in men demonstrated that seroconversion and antibody titers are higher in male adolescents aged 9–15 years than male adolescents aged 16–26 years [5]. Most MSM are likely to have had multiple sexual partners with increased risk of HPV acquisition before they attend a sexual health clinic [6]. It is our opinion that the most practical and ethical solution to the problem is to offer HPV vaccination to both male and female adolescents. It is therefore imperative to understand the knowledge, awareness and attitudes of adolescent boys to HPV and HPV vaccination to ensure uptake is maximised and both boys and girls are protected against HPV-related cancers in the future. This is vital given that, for example, in the USA, where a gender neutral vaccine is offered, there is evidence to suggest that vaccine uptake in male adolescents is low; in 2012, only 20.8% boys aged 13–17 years received at least one dose, with only 6.8% receiving the full three-dose schedule [7]. In the past 5 years, there has been a proliferation of studies examining knowledge and awareness of HPV in adolescent boys (which is likely reflective of changes in

Assessing the Needs of Informal Cancer Caregivers:A Review of the Instruments and Recommendations for Use

How patients make use of a specialist nurse function in head and neck cancer: an empirical study

The reliability and validity of a child and adolescent participation in decision-making questionnaire

BACKGROUND There is a growing impetus across the research, policy and practice communities for children and young people to participate in decisions that affect their lives. Furthermore, there is a dearth of general instruments that measure children and young peoples views on their participation in decision-making. This paper presents the reliability and validity of the Child and Adolescent Participation in Decision-Making Questionnaire (CAP-DMQ) and specifically looks at a population of looked-after children, where a lack of participation in decision-making is an acute issue. METHODS The participants were 151 looked after children and adolescents between 10-23 years of age who completed the 10 item CAP-DMQ. Of the participants 113 were in receipt of an advocacy service that had an aim of increasing participation in decision-making with the remaining participants not having received this service. RESULTS The results showed that the CAP-DMQ had good reliability (Cronbachs alpha = 0.94) and showed promising uni-dimensional construct validity through an exploratory factor analysis. The items in the CAP-DMQ also demonstrated good content validity by overlapping with prominent models of child and adolescent participation (Lundy 2007) and decision-making (Halpern 2014). A regression analysis showed that age and gender were not significant predictors of CAP-DMQ scores but receipt of advocacy was a significant predictor of scores (effect size d = 0.88), thus showing appropriate discriminant criterion validity. CONCLUSION Overall, the CAP-DMQ showed good reliability and validity. Therefore, the measure has excellent promise for theoretical investigation in the area of child and adolescent participation in decision-making and equally shows empirical promise for use as a measure in evaluating services, which have increasing the participation of children and adolescents in decision-making as an intended outcome.

Findings from a systematic review: 'Cancer and people with Serious Mental Illness'.

Background: Survival from cancer is poorer in the UK than other European countries. Critical illness may be a potential determinant of cancer outcomes but its role has not been described before. We assessed the incidence of admission to intensive care units (ICU) following cancer diagnosis to quantify the risk of critical illness among cancer patients. Method: We took data for solid cancer registrations in the West of Scotland region, UK, between 2000–2009 from the Scottish Cancer Registry. Linked hospital, ICU, and mortality records provided details of hospital admissions, deaths, sociodemographics and comorbidities. We assessed the incidence of admission to ICU within two years of cancer diagnosis and explored differences in hospital mortality by patient characteristics. Results: 6,121 (5.2%,95% CI 5.0–5.3%) out of 118,571 incident cancer patients developed a critical illness and were admitted to ICU within 2 years. Risk of critical illness was highest at ages 60–69 and higher in men. The cumulative inci-dence of critical illness was greatest for small intestinal (17.2%,95% CI 13.3–21.8%) and colorectal cancers (16.5%,15.9–17.1%). The risk following breast cancer was low (0.8%,95% CI 0.7–1.0%). Mortality in ICU was 14.1% (95% CI 13.3–15.0%), and during the hospital stay 24.6% (23.5– 25.7%). Mortality was greatest among emergency medical admissions and lowest among elective surgical patients. The risk of critical illness did not vary by socio-economic circumstances but mortality was higher among patients from deprived areas. Conclusions: About one in 20 cancer patients experiences a critical illness resulting in ICU admission within two years of cancer diagnosis. They experience high mortality which may make a significant contribution to cancer outcomes. The UK has lower provision of ICU than countries in which cancer survival is better. It is important to determine whether provision of ICU resources might reduce critical illness mortality among cancer patients.Aim: To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and health care professionals involved in their care. Background: Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals, and there is little evidence regarding the experiences of patients and caregivers. Design: A qualitative exploration using approximately 36 semi-structured interviews. Methods: Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare, and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. Discussion: There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care. Summary Statement Why this study is needed: • People with serious mental illness experience poorer cancer outcomes than the general population, with mortality rates around double those for patients without mental illness. There are indications that this is linked to service-related factors. • There has been no research that directly consults patients with comorbid cancer and serious mental illness, or their informal caregivers, about their experiences of cancer and of cancer care. There has only been one study directly consulting healthcare professionals about this issue.