Patient and public understanding of the concept of 'personalised medicine' in relation to cancer treatment: a systematic review.

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 understanding, and perceived benefits and concerns of PM in cancer treatment.

An online review of informational sources for advanced or high-risk cutaneous squamous cell carcinoma.

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 about either high-risk or advanced cSCC.

Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing.

Purpose: As 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 whom had BRCA1 and seven with BRCA2 mutations. Five women had or were currently receiving breast cancer treatment.

The development and initial evaluation of the Diarrhoea Management Diary (DMD) in patients with metastatic breast cancer.

Purpose: Chemotherapy-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 to assess CID, use of self-management strategies and treatment adherence.

A systematic review of communication interventions to help healthcare professionals discuss genetic testing for breast cancer.

Purpose: This 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 in February 2019 to identify training interventions available to HCPs with reference to communication skills.

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers.

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.

Working with Patients and Members of the Public: Informing Health Economics in Child Health Research.

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 cycle, from establishing whether the topic is important to influencing details of study design, wording of patient-facing documentation and interpretation and dissemination of findings.

Development and validation of the patient roles and responsibilities scale in cancer patients.

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-item PRRS was developed from the thematic analysis of two interview studies with cancer patients and caregivers.

The pervasive nature of uncertainty-a qualitative study of patients with advanced cancer and their informal caregivers.

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 developed from an initial process of open coding and tested iteratively as new data were collected.

Patient-reported outcome measures of the impact of cancer on patients' everyday lives: a systematic review.

Purpose: Patients 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 family roles.

Methods: Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO restricted to English language articles.

Patient-reported outcome measures for cancer caregivers: a systematic review.

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 specifically in cancer and appraised the content.

Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures.

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 study was (i) to seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children with neurodisability, and (ii) to appraise which multidimensional patient reported outcome measures (PROMs) could be used to assess salient health domains.

Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents.

Objectives: To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents.

Design: 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 theoretical foundation.

Setting: The study was conducted in community settings.

Parents' agendas in paediatric clinical trial recruitment are different from researchers' and often remain unvoiced: a qualitative study.

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 paediatric clinical trial and their comprehension of these issues to inform future recruitment practice. This qualitative interview and observational study examined recruitment in four placebo-controlled, double-blind randomised clinical trials of medicines for children.

Communication about children's clinical trials as observed and experienced: qualitative study of parents and practitioners.

Background: 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.

Methods And Findings: This qualitative study ran alongside four children's clinical trials in 11 UK research sites.

How do parents experience being asked to enter a child in a randomised controlled trial?

Background: 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, which allows them to articulate their views in their own words.

Discussion: Parents want to do their best for their children, and socially and legally their role is to care for and protect them yet the complexities of the medical and research context can challenge their fulfillment of this role.

Does neoadjuvant hormone therapy for early prostate cancer affect cognition? Results from a pilot study.

Objective: 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.

Patients, Subjects And Methods: Thirty-two patients with localized prostate cancer had cognitive assessments at baseline (T1) before the start of drug treatment, at 3 months (T2) or on completing drug treatment but before radiotherapy, and 9 months later (T3). Eighteen men with no prostate cancer (controls subjects) completed the cognitive tests at the same times.

Does hormone therapy for the treatment of breast cancer have a detrimental effect on memory and cognition? A pilot study.

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 impaired on a processing speed task (p=0.

The effects of hormone therapy on cognition in breast cancer.

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.

Factors affecting patient and clinician satisfaction with the clinical consultation: can communication skills training for clinicians improve satisfaction?

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 consultation and whether satisfaction can be improved with communication skills training.