Emily Arden-Close

Psychological distress and its correlates in ovarian cancer: a systematic review

Objective: Ovarian cancer is often diagnosed at an advanced stage, and consequently high levels of distress are often experienced. It is necessary to understand the factors associated with psychological distress in order to guide interventions to target those factors. The purpose of this systematic review was therefore to identify correlates of psychological distress in ovarian cancer.

Health-related quality of life in survivors of lymphoma: a systematic review and methodological critique

Survival rates for Hodgkin lymphoma and non-Hodgkin lymphoma have improved in recent years. However, these improvements are associated with various late effects, which can compromise health-related quality of life (HRQoL). Improving HRQoL is a significant goal in oncology, and increasingly one of the primary outcomes in clinical trials, but is dependent on availability of reliable and sensitive measures. This review therefore aimed to: (i) identify and evaluate commonly used HRQoL measures; (ii) compare HRQoL in patients with lymphoma with the general population; and assess the association between (iii) HRQoL and different treatments; and (iv) HRQoL and demographic, medical, and psychological variables. Standardized systematic searches identified 18 eligible studies that included adult survivors of lymphoma and reported quantitative results by histological diagnosis. Information about design, sample, measures and findings was extracted from each study. Survivors of lymphoma experienced worse physical but comparable mental HRQoL to the general population. No conclusions could be drawn about the association between different treatments and HRQoL. Correlates of better HRQoL included younger age, educational level, being employed, male gender, earlier stage disease, not having co-morbid illnesses, and meeting public health exercise guidelines. Limitations of current research relating to research design, sample demographics, and reporting of descriptive statistics were identified. Given the increasing numbers of patients living with lymphoma, controlled studies using appropriate measures are required to determine the HRQoL consequences associated with the condition.

Evaluation of a web-based intervention to reduce antibiotic prescribing for LRTI in six European countries: quantitative process analysis of the GRACE/INTRO randomised controlled trial

BackgroundTo reduce the spread of antibiotic resistance, there is a pressing need for worldwide implementation of effective interventions to promote more prudent prescribing of antibiotics for acute LRTI. This study is a process analysis of the GRACE/INTRO trial of a multifactorial intervention that reduced antibiotic prescribing for acute LRTI in six European countries. The aim was to understand how the interventions were implemented and to examine effects of the interventions on general practitioners’ (GPs’) and patients’ attitudes.MethodsGPs were cluster randomised to one of three intervention groups or a control group. The intervention groups received web-based training in either use of the C-reactive protein (CRP) test, communication skills and use of a patient booklet, or training in both. GP attitudes were measured before and after the intervention using constructs from the Theory of Planned Behaviour and a Website Satisfaction Questionnaire. Effects of the interventions on patients were assessed by a post-intervention questionnaire assessing patient enablement, satisfaction with the consultation, and beliefs about the risks and need for antibiotics.ResultsGPs in all countries and intervention groups had very positive perceptions of the intervention and the web-based training, and felt that taking part had helped them to reduce prescribing. All GPs perceived reducing prescribing as more important and less risky following the intervention, and GPs in the communication groups reported increased confidence to reduce prescribing. Patients in the communication groups who received the booklet reported the highest levels of enablement and satisfaction and had greater awareness that antibiotics could be unnecessary and harmful.ConclusionsOur findings suggest that the interventions should be broadly acceptable to both GPs and patients, as well as feasible to roll out more widely across Europe. There are also some indications that they could help to engender changes in GP and patient attitudes that will be helpful in the longer-term, such as increased awareness of the potential disadvantages of antibiotics and increased confidence to manage LRTI without them. Given the positive effects of the booklet on patient beliefs and attitudes, it seems logical to extend the use of the patient booklet to all patients.

The legacy of sperm banking: how fertility monitoring and disposal of sperm are linked with views of cancer treatment

BACKGROUND Sperm banking is recommended for all men before cancer treatment, which carries a risk of long-term gonadal damage. However, relatively few men take up the offer. Among them, few attend for fertility monitoring or agree to sperm disposal where fertility recovers. Sperm banks are therefore burdened by long-term storage of samples that may not be needed for conception, with implications for healthcare resources. The aims here were to determine the views of men regarding personal benefits of sperm banking, and the advantages and disadvantages of fertility monitoring and disposal in the longer term. METHODS Semi-structured interviews were conducted with 19 men who were diagnosed with cancer and had banked sperm at least 5 years previously. Men were asked to recall their experiences from diagnosis to the present time, focusing on the consequences for their fertility. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis. RESULTS Results are discussed in relation to decisions surrounding banking sperm, fertility monitoring and attitudes to disposal of banked sperm. Complex attitudes were identified, with mens views reflecting their understanding of their current and future fertility and the possible trajectory of cancer itself. Men are overwhelmed by information on diagnosis and fail to understand the implications of cancer treatment for their future fertility. CONCLUSIONS On diagnosis, men are given large amounts of information about cancer and treatment but fail to understand the longer-term implications of sperm banking. These implications need to be specifically addressed at subsequent appointments in order to optimize fertility monitoring and timely disposal of sperm samples.

Implications of sperm banking for health-related quality of life up to 1 year after cancer diagnosis

Background:Sperm banking is recommended for all men diagnosed with cancer where treatment is associated with risk of long-term gonadatoxicity, to offer the opportunity of fatherhood and improved quality of life. However, uptake of sperm banking is lower than expected and little is known about why men refuse. Our aims were to determine: (i) demographic and medical variables associated with decisions about banking and (ii) differences in quality of life between bankers and non-bankers at diagnosis (Time 1 (T1)) and 1 year later (Time 2 (T2)).Methods:Questionnaires were completed by 91 men (response rate=86.67%) at T1 and 78 (85.71% response rate) at T2.Results:In all, 44 (56.41%) banked sperm. They were younger and less likely to have children than non-bankers. In a subset of men who were not sure if they wanted children in the future (n=36), 24 banked sperm. Among this group, those who banked were younger, more satisfied with clinic appointments and less worried about the health of future children. At T2, there were no differences in quality of life between bankers and non-bankers.Conclusion:For those who are uncertain about future reproductive plans, decisions depend on their health on diagnosis and satisfaction with clinic care. We conclude that extra care should be taken in counselling younger men who may have given little consideration to future parenting. Results support previous findings that the role of the doctor is vital in facilitating decisions, especially for those who are undecided about whether they wanted children in the future or not.

Sexual Functioning in Male Survivors of Lymphoma: A Systematic Review (CME)

INTRODUCTION The lymphomas (Hodgkins lymphoma [HL] and non-Hodgkins lymphoma [NHL]) are among the most common cancers affecting men under 45 years. Survival rates are now excellent, but treatment is associated with a number of side effects including sexual dysfunction with potential implications for compromised quality of life (QoL). AIMS To address the (i) prevalence of sexual dysfunction among lymphoma survivors relative to the general population, survivors of other cancers, and in survivors of HL and NHL; and (ii) relationships between sexual functioning and disease and treatment, demographic, and psychological variables. METHODS Inclusion criteria were quantitative studies that focused on adult male survivors of lymphoma and included a comparison group and presented results separately for HL and NHL. Standardized systematic searches were used. Information about design, sample size, age, time since diagnosis, type of treatment, comparison group, measures, and findings were extracted from eligible studies. RESULTS Ten articles met the inclusion criteria, of which, nine included patients with HL only, and one included patients with HL or NHL. Sexual function was compromised relative to the general population, better than testicular cancer survivors, and worse than leukemia survivors. Depression was consistently associated with sexual dysfunction. There was evidence that chemotherapy, relapse, reduced testosterone levels, older age at survey, and worse physical QoL were associated with worse sexual function. CONCLUSIONS Conclusions are limited by methodological issues including lack of utilization of standardized measures of sexual function and longitudinal research. Even so, there is evidence of sexual dysfunction among lymphoma survivors. Clinicians need to be sensitive to these issues. Future longitudinal work is necessary to determine the likelihood of recovery.

The person-based approach to enhancing the acceptability and feasibility of interventions

BackgroundThis paper provides three illustrations of how the “person-based approach” can be used to assess and enhance the acceptability and feasibility of an intervention during the early stages of development and evaluation. The person-based approach involves using mixed methods research to systematically investigate the beliefs, attitudes, needs and situation of the people who will be using the intervention. The in-depth understanding of users’ perspectives derived from this research then enables intervention developers to design or modify the intervention to make it more relevant, persuasive, accessible and engaging.MethodsThe first illustration describes how relevant beliefs and attitudes of people with asthma were identified from the existing qualitative and quantitative literature and then used to create guiding principles to inform the design of a web-based intervention to improve quality of life. The second illustration describes how qualitative “think-aloud” interviews and patient and public involvement (PPI) input are used to improve the acceptability of a booklet for people with asthma. In the third illustration, iterative think-aloud methods are used to create a more accurate and accessible activity planner for people with diabetes.ResultsIn the first illustration of the person-based approach, we present the guiding principles we developed to summarise key design issues/objectives and key intervention features to address them. The second illustration provides evidence from interviews that positive, non-medical messages and images were preferred in booklet materials for people with asthma. The third illustration demonstrates that people with diabetes found it difficult to complete an online activity planner accurately, resulting in incorrect personalised advice being given prior to appropriate modification of the planner.ConclusionsThe person-based approach to intervention development can complement theory- and evidence-based development and participant input into intervention design, offering a systematic process for systematically investigating and incorporating the views of a wide range of users.

Monitoring fertility (semen analysis) by cancer survivors who banked sperm prior to cancer treatment

STUDY QUESTION What medical and psychological variables predict why men with banked sperm do not return for semen analysis after their cancer treatment has ended? SUMMARY ANSWER Men who decline the offer of semen analysis are less likely to have reported adverse side effects during cancer treatment, and have a more negative experience of banking sperm and a more negative attitude towards disposal of their stored semen than those who attend. WHAT IS KNOWN ALREADY Previous authors have noted that male cancer survivors seem reluctant to have their fertility tested after their treatment has ended. Moreover, the utilization rates of banked sperm are very low (<10%) and the majority of samples are kept for many years without being used. STUDY DESIGN, SIZE AND DURATION A cross-sectional study of 499 cancer survivors who were sent a questionnaire about their views on sperm banking, fertility and post-treatment semen analysis between April 2008 and December 2010. PARTICIPANTS AND SETTING Men (aged 18-55 years) who had banked sperm in Sheffield and Nottingham (UK) prior to gonadotoxic treatment for cancer more than 5 years previously. MAIN RESULTS AND THE ROLE OF CHANCE Completed questionnaires were received from 193 men (38.7% response rate) whose samples had been banked for 9.18 ± 3.70 years (range = 4.94-26.21) and whose current age was 35.08 ± 7.08 years (range = 21.58-54.34; mean ± SD). One-third (35.8%) had never attended for semen analysis. In multivariate analysis, the odds of not attending for semen analysis were significantly greater among men who did not experience adverse treatment side effects [odds ratio (OR) = 5.72, 95% confidence interval (CI) = 2.10-15.56], who reported a more negative experience of banking sperm (OR = 1.82, 95% CI = 1.17-2.82) and a more negative attitude to disposal of their stored semen (OR = 1.56, 95% CI = 1.01-2.42). LIMITATIONS AND REASONS FOR CAUTION Only 38.7% of those eligible agreed to take part. We do not know the characteristics of men who declined to take part, if they agreed to attend semen analysis without completing the questionnaire or whether they had chosen to have semen analysis performed elsewhere (e.g. private sector). Some of the measures used (e.g. experience of banking sperm) relied on mens recall of events many years previously. WIDER IMPLICATIONS OF THE FINDINGS New strategies are required to encourage these men to engage with fertility monitoring programmes if sperm banks are to be used cost-effectively and men are to be given appropriate fertility advice. STUDY FUNDING AND COMPETING INTERESTS This paper was supported by funding from Cancer Research-UK to C.E., A.A.P. and R.R. (C481/A8141). The views expressed are those of the authors. No competing interests declared.

Gender differences in self-reported late effects, quality of life and satisfaction with clinic in survivors of lymphoma.

Objectives: Gender differences in perceived vulnerability to late effects and views about follow‐up among cancer survivors have received little attention. As lymphoma affects both genders similarly, we compared the consequences of cancer (late effects, perceived vulnerability and quality of life (health‐related quality of life (HRQoL)), and satisfaction with clinic visits between genders.

Developing digital interventions: a methodological guide

Digital interventions are becoming an increasingly popular method of delivering healthcare as they enable and promote patient self-management. This paper provides a methodological guide to the processes involved in developing effective digital interventions, detailing how to plan and develop such interventions to avoid common pitfalls. It demonstrates the need for mixed qualitative and quantitative methods in order to develop digital interventions which are effective, feasible, and acceptable to users and stakeholders.