Valerie Shilling

• Brighton and Sussex Medical School, University of Sussex

Background The use of technology in medical education has been increasing with more students exposed to some form of online learning or tutorials, under the umbrella of virtual learning (VL). Many programmes, particularly those involving virtual reality, have centred on practical skills, such as surgical techniques or anatomical knowledge, rather t...

Objective: The objective of this scoping review is to synthesise the existing literature on the knowledge and understanding of multiple myeloma patients and their informal caregivers regarding diagnosis, prognosis, and treatment options. Introduction: Knowledge plays a critical role in various aspects of disease management and overall health. Multi...

Purpose To determine the experiences, information, support needs and quality of life of women in the UK living with metastatic breast cancer (MBC) to provide content for educational materials. Methods An online survey, hosted for 3 months on a UK MBC charity website, comprised sections covering issues such as communication about MBC treatment and...

Personalised medicine (PM) is becoming increasingly integrated into standard clinical practice for treating numerous diseases, including cancer. Implementing PM into healthcare systems will only be successful with the acceptance and input of both patients' and public opinion. This review, therefore, aimed to identify both patients' and public under...

Objective Cutaneous squamous cell carcinoma (cSCC) is one of the most prevalent non-melanoma skin cancers worldwide. While usually treatable, patients with high-risk or advanced disease have few treatment options and limited resources available. This review assesses what online information resources are available to patients and their families abou...

Background Cutaneous squamous cell carcinoma (cSCC) accounts for nearly a quarter of non‐melanoma skin cancers. Studies reporting Quality of Life (QoL) in this group focus on early stage disease. A small proportion of cSCC patients have high‐risk or advanced disease, with potentially significant QoL impacts, yet are largely overlooked. Aims This s...

PurposeAs demand for genetic testing grows and a wide range of health care professionals (HCPs) are potentially involved in discussions about testing and delivering results, we developed an educational package to help HCPs with these conversations.Methods To inform the content of training materials, we conducted interviews with 11 women four of who...

PurposeChemotherapy-induced diarrhoea (CID) is a common, but often underreported problem in patients with breast cancer that has a profound effect on quality of life. It is best measured from a patient’s perspective, but tools are limited. The aim of this study was to develop and evaluate the Diarrhoea Management Diary (DMD), a self-report measure...

PurposeThis systematic review examined educational training interventions for healthcare professionals (HCPs) discussing genetic testing and risk for hereditary breast cancer. There was a particular focus on the presence, and content, of communication elements within these packages.Methods Searches were run via CINAHL, EMBASE, PUBMED, and PsychInfo...

Background The PROACT (Patient Reported Outcomes in cancer, impact of Age and Carer role demands associated with Treatment) study had the primary aim of developing 2 scales measuring the impact of cancer on wellbeing and caregiving responsibilities, for people with cancer and the individuals supporting them. The project consisted of 4 consecutive s...

Purpose The caregiver roles and responsibilities scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation. Methods The CRRS was developed from the thematic analysis of two interview studies with cancer patients...

Purpose: Trials of novel drugs used in advanced disease often show only progression-free survival or modest overall survival benefits. Hypothetical studies suggest that stabilisation of metastatic disease and/or symptom burden are worth treatment-related side effects. We examined this premise contemporaneously using qualitative and quantitative me...

Purpose: The Patient Roles and Responsibilities Scale (PRRS) was developed to enable a broader evaluation of the impact of cancer and cancer treatment, measuring 'real world' roles and responsibilities such as caring for others and financial and employment responsibilities. Here, we report the development and initial validation. Methods: The 29-...

This paper considers patient and public involvement (PPI) in health economics research and how this might be facilitated. PPI refers to research carried out ‘with’ or ‘by’ members of the public and is now an important aspect of health research policies internationally. Patients and members of the public can be involved in all stages of the research...

Purpose: The aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. Methods: In-depth qualitative interviews were transcribed verbatim. A thematic framework was devel...

PurposePatients with advanced disease are living longer and commonly used patient-reported outcome measures (PROMs) may miss relevant elements of the quality of extended survival. This systematic review examines the measures used to capture aspects of the quality of survival including impact on patients’ everyday lives such as finances, work and fa...

218Background: In the PROACT study, we developed two scales measuring wide-ranging life impacts of cancer and treatment for patients (pts) and caregivers (cgs). Qualitative work in the development phase produced rich data on the concerns of both groups. Here we explore one specific topic, uncertainty, and contrast pts' and cgs' experience. Methods:...

223Background: Patients value quality of life (QoL) not just quantity of life but QoL data from measures in advanced disease are sparse for drugs with only progression-free survival (PFS) or modest overall survival (OS) benefits. We examined if stabilisation of metastatic disease and/or disease symptom burden were worth treatment side effects in th...

227 Background: Living with cancer and its treatment affects many aspects of life, impacting roles and responsibilities. Formal assessment of these impacts is not normal practice and there is a need for rigorously developed, well-validated measures for both patients (pts) and informal caregivers (cgs). We present an overview of work (PROACT) detail...

PurposeThe use of novel and often expensive drugs offering limited survival benefit in advanced disease is controversial. Treatment recommendations are influenced by patient characteristics and trial data showing overall response rates (ORR), progression-free survival (PFS) and overall survival (OS). PFS is frequently the primary outcome in licenci...

Purpose Informal caregivers provide invaluable help and support to people with cancer. As treatments extend survival and the potential burdens on carers increase, there is a need to assess the impact of the role. This systematic review identified instruments that measure the impact of caregiving, evaluated their psychometric performance specificall...

Background: Assent is used to take children's wishes into account when they are invited into clinical trials, but the concept has attracted considerable criticism. We investigated children's accounts of decision-making with the aim of informing practice in supporting children when invited to join a clinical trial. Methods: We audio-recorded qual...

Purpose: Informal caregivers provide invaluable help and support to people with cancer. As treatments extend survival and the potential burdens on carers increase, there is a need to assess the impact of the role. This systematic review identified instruments that measure the impact of caregiving, evaluated their psychometric performance specifica...

Background Parents of disabled children are encouraged to seek peer support. Delivering one-to-one support requires resources; therefore, investigating how these services may impact on families and those providing the service is important when evaluating such services.Methods We carried out a qualitative study involving semi-structured interviews a...

Background: Health services are increasingly focused on measuring and monitoring outcomes, particularly those that reflect patients' priorities. To be meaningful, outcomes measured should be valued by patients and carers, be consistent with what health professionals seek to achieve, and be robust in terms of measurement properties. The aim of this...

Objective To seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children and young people with neurodisability. To appraise the appropriateness and measurement properties of multidimensional patient reported outcome measures (PROMs) to assess the outcome domains. Met...

We evaluated the one-to-one befriending service offered to parents of disabled children by Face2Face (F2F) in Devon and Cornwall. Parents’, befrienders’ and professionals’ views and experiences of peer support were generally positive but it can be hard to measure the impact of peer support. We found that there were important impacts for the parents...

Background Parents of disabled children often seek support from their peers. The shared experience between parents appears to be a crucial mediating factor. Understanding how a sense of shared experience is fostered can help to design and evaluate services that seek to provide peer support.Methods We carried out a qualitative study involving semi-s...

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting. Background The identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large numb...

To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents. Qualitative research incorporating a thematic analysis of the data supported by the Framework Approach; the International Classification of Functioning, Disability and Health (ICF) provided a t...

Ensuring parents make an informed decision about their child's participation in a clinical trial is a challenge for practitioners as a parent's comprehension of a trial may differ from that intended by the practitioners responsible for recruitment. We explored what issues parents consider important when making a decision about participation in a pa...

Meeting families information needs requires closer engagement with families, and gaining insight and appreciation of what it is exactly families want to know in order to usefully inform their decision-making about caring for their children.We recommend that health professionals and researchers work in partnership with families to address their info...

Aim: To review the qualitative and quantitative evidence of the benefits of peer support for parents of children with disabling conditions in the context of health, well-being, impact on family, and economic and service implications. Method: We comprehensively searched multiple databases. Eligible studies evaluated parent-to-parent support and r...

Disabled children are a broad group that includes those with complex, special or additional health needs as a result of chronic physical, cognitive, communication or behavioural problems. These children are more frequently admitted to hospital than other children; however, there appears to be relatively little research on their experience as inpati...

Consenting parent's views on the verbal and written information they received (DOC)

Participating trials and the recruitment process (DOC)

Summary topic guides for interviews (DOC)

The experiences of parents who declined (DOC)

Practitioners' views on verbal and written information for families (DOC)

Recruiting children to clinical trials is perceived to be challenging. To identify ways to optimise recruitment and its conduct, we compared how parents and practitioners described their experiences of recruitment to clinical trials. This qualitative study ran alongside four children's clinical trials in 11 UK research sites. It compared analyses o...

Rosenbaum considered the pros andcons of partnerships between researchers and families wherethe families have greater power to influence the researchagenda and how research studies are designed. We were con-sulted when the editorial was being written and directed Pro-fessor Rosenbaum to relevant references on how public andpatient involvement is evo...

To investigate recruitment processes across a range of clinical trials and from the perspective of parents, young people and practitioners to identify strategies to improve recruitment and its conduct across the spectrum of trials of medicines for children. Qualitative interview and observational study. Eleven paediatric clinical trial centres recr...

Aims To observe the process of communication about trials and compare these observations with parents' and practitioners' experiences of the process. Methods Qualitative observational and interview study conducted alongside three trials of medicines for children. Data were verbatim transcripts of (1) 33 family-practitioner trial discussions, and qu...

As the number of randomised controlled trials of medicines for children increases, it becomes progressively more important to understand the experiences of parents who are asked to enroll their child in a trial. This paper presents a narrative review of research evidence on parents' experiences of trial recruitment focussing on qualitative research...

Self-reported cognitive problems are common among women receiving adjuvant therapy for breast cancer but are unrelated to actual cognitive impairment. To date, no studies have objectively measured impairment and asked patients to speak about the type and extent of problems they encounter. We report interview data from 142 breast cancer patients rec...

The neuropsychological performance of 85 women with early stage breast cancer scheduled for chemotherapy, 43 women scheduled for endocrine therapy and/or radiotherapy and 49 healthy control subjects was assessed at baseline (T1), postchemotherapy (or 6 months) (T2) and at 18 months (T3). Repeated measures analysis found no significant interactions...

A growing number of studies report cognitive impairment after chemotherapy; indeed the phenomenon of chemo-fog is now almost universally accepted. We are concerned however that there is little if any consistency in the way in which patients are classified as showing cognitive impairment or not. We aim to demonstrate that different methods of analys...

To examine, in a prospective study, the influence that temporary reversible medical castration for localized prostate cancer has on cognition, by assessing whether temporary 3-5 month treatment with a luteinizing-hormone releasing hormone (LHRH) agonist before radical radiotherapy had a short- or long-term affect on cognitive function. Thirty-two p...

Several studies have reported that chemotherapy-treated patients have impaired cognition function relative to control groups. We are conducting a longitudinal study with cognitive assessments at baseline, 6 and 18 months. A planned preliminary analysis of data from 50 chemotherapy patients and 43 healthy controls at baseline and post-treatment foun...

This pilot study examines whether hormone therapy for breast cancer affects cognition. Patients participating in a randomised trial of anastrozole, tamoxifen alone or combined (ATAC) (n=94) and a group of women without breast cancer (n=35) completed a battery of neuropsychological measures. Compared with the control group, the patients were impaire...

The use of hormonal therapies for the treatment of breast cancer is common, yet few studies have examined the possible cognitive effects. Several regions of the brain, important in memory and cognition, are rich in oestrogen receptors. As a result, the long-term use of anti-oestrogens may have potential consequences for cognition. This project aims...

The provision of adequate information in a clear and sensitive manner can improve cancer patients' experience of care. Satisfaction with the cancer consultation may impact on satisfaction with care in general and adjustment to the disease. This study aims to identify factors that influence patient and clinician satisfaction with the cancer consulta...

Inhibition is a central construct to the frontal lobe theory of ageing, yet its construct validity remains unproven. Furthermore, age effects on measures of inhibition are often reported without adequate control for the effects of global slowing on performance. We investigated inhibitory function in older adults in two experiments. In Experiment 1,...

Recent research suggests that oestrogen may play an important role in cognition. Epidemiological and experimental studies of hormone replacement therapy in post-menopausal women suggest that oestrogen may be important to verbal memory in particular, as well as other cognitive functions such as attention and processing speed. Some studies have also...

Results of investigations of how specific behavioural changes in old age may be related to local changes in the brain have been discrepant because of neglect of methodological issues. Among these are neglect of the reliability and validity of frontal and executive tests; the operational definition and construct validity of hypothetical functional p...