Improving women's knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome - development and acceptability of a low literacy decision aid.

BACKGROUND: Access to information about prenatal screening is important particularly in light of new techniques such as non-invasive prenatal testing (NIPT). This study aimed to develop and examine the acceptability of a low literacy decision aid (DA) about Down syndrome screening among pregnant women with varying education levels and GPs. METHODS: We developed a DA booklet providing information about first-trimester combined testing, maternal serum screening, and NIPT. GPs and women participated in a telephone interview to examine the acceptability of the DA and measure screening knowledge before and after reading the DA. The knowledge measure was designed to assess whether women had understood the gist of the information presented in the decision aid. It comprised conceptual questions (e.g. screening tells you the chance of having a baby with Down syndrome) and numeric questions (e.g. the accuracy of different screening tests). RESULTS: Twenty-nine women and 18 GPs participated. Regardless of education level, most women found the booklet 'very' clearly presented (n = 22, 76%), and 'very' informative (n = 23, 80%). Overall, women's conceptual and numeric knowledge improved after exposure to the DA, from 4% having adequate knowledge to 69%. Women's knowledge of NIPT also improved after receiving the decision aid, irrespective of education. Most GPs found it 'very' clearly presented (n = 13, 72%), and that it would 'very much' facilitate decision-making (n = 16, 89%). CONCLUSIONS: The DA was found to be acceptable to women as well as GPs. A comprehensive evaluation of the efficacy of the decision aid compared to standard information is an important next step. Strategies are needed on how to implement the tool in practice.

Protocol for a qualitative study exploring the lived experience of hearing loss and patient reported experience in the UK: the HeLP study.

INTRODUCTION: Worldwide, hearing loss is a significant public health issue and one of the most common chronic health conditions experienced by older adults. Hearing loss is associated with communication difficulties, social withdrawal, isolation and lower quality of life. Although hearing aid technology has improved significantly, the workload of managing hearing aids has increased. The aim of this qualitative study is to develop a novel theory of people's lived experience of hearing loss across the lifespan. METHODS: Eligible participants will be young people and adults aged 16 years and above who have a hearing loss and carers/family members of people with a hearing loss. This study will use individual, in-depth face-to-face or online interviews. With participants' permission, interviews will be audio-recorded and transcribed verbatim. A grounded theory approach to concurrent data gathering and analysis will develop grouped codes and categories and link these to provide a novel theory to describe the experience of hearing loss. ETHICS AND DISSEMINATION: The study was approved by the West of Scotland Research Ethics Service (approval date: 6 May 2022 ref: 22/WS/0057) and the Health Research Authority and Health and Care Research Wales Approval (approval date: 14 June 2022; IRAS project ID: 308816). The research will inform the development of a Patient Reported Experience Measure to improve the information and support given to patients. Findings will be disseminated through peer-reviewed articles and at academic conferences, as well as to our patient and public involvement groups, healthcare professionals, audiology services and local commissioners.

Protocol for the development and validation of a patient-reported experience measure (PREM) for people with hearing loss: the PREM-HeLP.

INTRODUCTION: Hearing loss is a common chronic health condition and adversely affects communication and social function resulting in loneliness, social isolation and depression. We know little about the patient experience of living with hearing loss and their views on the quality of the audiology service. In this study, we will develop and validate the first patient-reported experience measure (PREM) to understand patients' experiences of living with hearing loss and their healthcare interactions with audiology services. METHODS AND ANALYSIS: We will develop the PREM in three phases: (1) development of PREM prototype (items/statements) derived from previous qualitative work and narrative review, (2) cognitive interview testing of the PREM prototype using a 'think aloud' technique to examine the acceptability and comprehensibility of the tool and refine accordingly and (3) psychometric testing of the modified PREM with 300 participants to assess the reliability and validity of the tool using Rasch analyses with sequential item reduction. Eligible participants will be young people and adults aged 16 years and over who have hearing loss. Participants will be recruited from three clinical sites located in England (Bath, Bristol) and Scotland (Tayside) and non-clinical settings (eg, lip-reading classes, residential care settings, national charity links, social media). ETHICS AND DISSEMINATION: The study was approved by the West of Scotland Research Ethics Service (approval date: 6 May 2022; ref: 22/WS/0057) and the Health Research Authority and Health and Care Research Wales (HCRW) Approval (approval date: 14 June 2022; IRAS project ID: 308816). Findings will be shared with our patient and public involvement groups, academics, audiology communities and services and local commissioners via publications and presentations. The PREM will be made available to clinicians and researchers without charge.

'You're kind of left to your own devices': a qualitative focus group study of patients with breast, prostate or blood cancer at a hospital in the South West of England, exploring their engagement with exercise and physical activity during cancer treatment and in the months following standard care.

OBJECTIVES: The aim of this study was to explore the experiences of patients with breast, prostate or blood cancer, regarding their (1) engagement with exercise and physical activity during treatment and in the months following standard care, and (2) the meanings attached to these lifestyle behaviours. DESIGN: A qualitative study using focus groups. The groups were audio recorded, transcribed and analysed using Framework analysis. SETTING: A hospital-based cancer treatment centre in the South-West of England. PARTICIPANTS: Eighteen people who had either completed treatment or were currently on maintenance therapy for breast, prostate or blood cancer (non-Hodgkin lymphoma or Hodgkin lymphoma). RESULTS: Participants reported treatment limiting their ability to engage in exercise and physical activity. However, participants were aware of the physiological, emotional and social benefits of exercise and expressed a desire to maintain a physically active lifestyle before, during and after treatment. They noted a lack of concrete guidance and appropriate exercise classes for people with cancer and felt poorly informed about the type, intensity, duration and frequency of exercise they should be undertaking. As such, participants reported making decisions on their own, relying on their intuition and listening to their bodies to gauge whether they were doing enough exercise (or not). CONCLUSIONS: Participants were aware of the benefits of a physically active lifestyle during and following cancer treatment, but were not familiar with exercise and physical activity guidelines for people living with and beyond cancer. There is a need for healthcare professionals, academics and policy makers to determine how exercise and physical activity can be supported in clinical settings in realistic and meaningful ways accommodating individual patient circumstances.

Assessing the usefulness and acceptability of a low health literacy online decision aid about reproductive choices for younger women with breast cancer: the aLLIAnCE pilot study protocol.

BACKGROUND: Young women diagnosed with breast cancer may be confronted by many difficult decisions, especially around fertility preservation prior to commencing cancer treatment. The information to be conveyed is complex, and it may be difficult to weigh up the risks and benefits of the different fertility preservation options available. This complexity is compounded by the widespread low levels of literacy and health literacy in Australia, which may result in greater difficulties in understanding available health information and in decision-making. METHODS/DESIGN: A working group of experts have developed a fertility-related online decision aid for a low health literacy population, guided by health literacy principles. The decision aid will be pilot tested with 30 women diagnosed with early breast cancer between 5 years and 6 months previously. To be eligible, at the time of diagnosis, women must be between 18 and 40 years (inclusive), pre-menopausal, have no history of metastatic disease, have not completed their families, be able to give informed consent and have low health literacy. Participants will be asked to reflect back to the time in which they were diagnosed. Participants will complete a questionnaire before and after reviewing the decision aid to determine the feasibility, use and acceptability of the decision aid. The decision aid will be modified accordingly. Participants may also choose to review a previously developed (high literacy) decision aid and provide feedback in comparison to the low health literacy decision aid. DISCUSSION: This project represents the first study to develop an online fertility decision aid developed from low health literacy models in the context of breast cancer. It is anticipated that the low health literacy decision aid will be useful and acceptable to young women with low health literacy who have been diagnosed with breast cancer and that it will be preferred over the high literacy decision aid. TRIAL REGISTRATION: ACTRN12615001364561p.