Supporting patients with low health literacy: what role do radiation therapists play?

Purpose: Health literacy plays a key role in a patient’s ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists’ perspectives on how they support people with lower health literacy who are undergoing radiotherapy. Methods: Semi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia. Results: The four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient’s health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient’s health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations. Conclusion: A more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population

Supportive care of patients diagnosed with high grade glioma and their carers in Australia.

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways

What is the effect of a low literacy talking book on patient knowledge, anxiety and communication before radiation therapy starts? A pilot study

Introduction: Radiation therapy is a common cancer treatment, requiring timely information to help patients prepare for treatment. We pilot tested a low literacy, psycho-educational talking book (written booklet, with accompanying audio recording) to examine (i) the effect of the tool on knowledge, anxiety and communication; (ii) acceptability, and (iii) how it was used in appointments. Methods: A pre-post design was employed. Patients scheduled to receive radiation therapy for any cancer were recruited from two hospitals in Sydney, Australia. Participants were sent the talking book before treatment planning and completed baseline and follow-up surveys, before and after the intervention. Results: Forty participants were recruited, and 39 completed all study assessments. Overall, knowledge increased after receiving the talking book by 3.8 points from 13.9 to 17.7/20 (95% confidence interval (CI) 2.7, 4.8, P < 0.001). Anxiety and concerns were significantly lower after receiving the talking book (P = 0.015 and P = 0.004, respectively). Nearly half of participants (s = 17, 48%) reported using the book during appointments. Most reported finding it easier to communicate (n = 31, 89%) and to ask more questions (n = 21, 62%). Conclusion: The talking book shows promise in improving knowledge, reducing anxiety and enhancing communication. Strategies to support the implementation of the talking book are required. Further studies to translate the book into different languages are also planned

A low literacy targeted talking book about radiation therapy for cancer: development and acceptability

© 2018, Springer-Verlag GmbH Germany, part of Springer Nature. Purpose: To develop a low literacy talking book (written book with accompanying audio-recording) about radiation therapy and explore its acceptability with patients and caregivers. Method: The talking book was developed iteratively using low literacy design principles and a multidisciplinary committee comprising consumers and experts in radiation oncology, nursing, behavioural sciences, and linguistics. It contained illustrations, photos, and information on: treatment planning, daily treatment, side effects, psychosocial health, and a glossary of medical terms. Semi-structured interviews were conducted with patients who self-reported low functional health literacy and caregivers to explore their views on the resource. Thematic analysis using a framework approach informed the analysis. Results: Participants were very satisfied with the content, illustrations, and language in the resource. Most were unfamiliar with the term ‘talking book’, but liked the option of different media (text and audio). The resource was seen as facilitating communication with the cancer care team by prompting question-asking and equipping patients and their families with knowledge to communicate confidently. Conclusions: The low literacy talking book was well accepted by patients and their caregivers. The next step is to examine the effect of the resource on patients’ knowledge, anxiety, concerns, and communication with the cancer care team

Caring for someone with high-grade glioma: A time of rapid change for caregivers

Patients diagnosed with high-grade gliomas have a poor prognosis and limited life expectancy, and often experience rapid decline in function. Caring for a patient with high-grade glioma is particularly stressful because caregivers are faced not only with cancer-related caregiving issues, but also issues relating to caring for someone with cognitive impairment. This study aimed to articulate the experiences of family caregivers of people diagnosed with high-grade glioma and to describe their information and support needs. A grounded theory method was adopted. Twenty-one family caregivers of people with high-grade glioma were interviewed using a semi-structured interview guide. A constant comparison method of data analysis was employed. A central theme, A Time of Rapid Change and two sub-themes, Renegotiating Relationships and Learning to be a Caregiver, emerged to describe the experiences of participants. Caregiving was characterised by numerous role and life changes from the moment of diagnosis. Caregivers in this study reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma

Validity and reliability testing of two instruments to measure breast cancer patients' concerns and information needs relating to radiation therapy

AB BACKGROUND: It is difficult to determine the most effective approach to patient education or tailor education interventions for patients in radiotherapy without tools that assess patients' specific radiation therapy information needs and concerns. Therefore, the aim of this study was to develop psychometrically sound tools to adequately determine the concerns and information needs of cancer patients during radiation therapy. PATIENTS AND METHODS: Two tools were developed to (1) determine patients concerns about radiation therapy (RT Concerns Scale) and (2) ascertain patient's information needs at different time point during their radiation therapy (RT Information Needs Scale). Tools were based on previous research by the authors, published literature on breast cancer and radiation therapy and information behaviour research. Thirty-one breast cancer patients completed the questionnaire on one occasion and thirty participants completed the questionnaire on a second occasion to facilitate test-retest reliability. One participant's responses were removed from the analysis. Results were analysed for content validity, internal consistency and stability over time. RESULTS: Both tools demonstrated high internal consistency and adequate stability over time. The nine items in the RT Concerns Scale were retained because they met all pre-set psychometric criteria. Two items were deleted from the RT Information Needs Scale because they did not meet content validity criteria and did not achieve pre-specified criteria for internal consistency. This tool now contains 22 items. CONCLUSION: This paper provides preliminary data suggesting that the two tools presented are reliable and valid and would be suitable for use in trials or in the clinical setting

Radiation therapists' and radiation oncology medical physicists' perceptions of work and the working environment in Australia: A qualitative study

© 2016 John Wiley & Sons Ltd. Workforce recruitment and retention are issues in radiation oncology. The working environment is likely to have an impact on retention; however, there is a lack of research in this area. The objectives of this study were to: investigate radiation therapists' (RTs) and radiation oncology medical physicists' (ROMPs) perceptions of work and the working environment; and determine the factors that influence the ability of RTs and ROMPs to undertake their work and how these factors affect recruitment and retention. Semi-structured interviews were conducted and thematic analysis was used. Twenty-eight RTs and 21 ROMPs participated. The overarching themes were delivering care, support in work, working conditions and lifestyle. The overarching themes were mostly consistent across both groups; however, the exemplars reflected the different roles and perspectives of RTs and ROMPs. Participants described the importance they placed on treating patients and improving their lives. Working conditions were sometimes difficult with participants reporting pressure at work, large workloads and longer hours and overtime. Insufficient staff numbers impacted on the effectiveness of staff, the working environment and intentions to stay. Staff satisfaction is likely to be improved if changes are made to the working environment. We make recommendations that may assist departments to support RTs and ROMPs

RT Prepare: a radiation therapist-delivered intervention reduces psychological distress in women with breast cancer referred for radiotherapy

© 2018 Cancer Research UK Background: The aims of this study were to determine whether a radiation therapist-led patient education intervention (RT Prepare) reduced breasts cancer patients’ psychological distress (primary endpoint); anxiety, depression and concerns about radiotherapy, and increased knowledge of radiotherapy and preparedness (secondary endpoints). Patient health system usage and costs were also assessed. Methods: A multiple-baseline study across three sites. The RT Prepare intervention comprised two consultations with a radiation therapist: prior to treatment planning and on the first day of treatment. Radiation therapists focused on providing sensory and procedural information and addressing patients’ pre-treatment anxiety. Usual care data were collected prior to intervention commencement. Data collection occurred: after meeting their radiation oncologist, prior to treatment planning, first day of treatment and after treatment completion. Multilevel mixed effects regression models were used. Results: In total, 218 usual care and 190 intervention patients participated. Compared with usual care, intervention participants reported lower psychological distress at treatment commencement (p = 0.01); lower concerns about radiotherapy (p &lt; 0.01); higher patient knowledge (p &lt; 0.001); higher preparedness for procedural concerns (p &lt; 0.001) and higher preparedness for sensory-psychological concerns at treatment planning (p &lt; 0.001). Mean within-trial costs per patient were estimated at $AU159 (US$120); mean ongoing costs at $AU35 (US$26). Conclusion: The RT Prepare intervention was effective in reducing breast cancer patients’ psychological distress and preparing patients for treatment. This intervention provides an opportunity for radiation therapists to extend their role into providing patients with information and support prior to treatment to reduce psychological distress