- Mary A. Tanay (London, United Kingdom)
Supportive care in cancer makes excellent cancer care possible! Recent developments (MASCC)
- Elaine Tomlins (Southampton, United Kingdom)
Cognition, sleep and the daily functioning of patients with cancer: A time for multi-modal management interventions
- Grigorios Kotronoulas (Glasgow, United Kingdom)
CN61 - Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): Interview results
- Lucy Matthews (Brighton, United Kingdom)
Abstract
Background
Little is known about patients’ interactions with Supported Self-Management (SSM) for early breast cancer (EBC), or confidence in managing their care in this pathway. The PRAGMATIC study allowed us to explore these issues.
Methods
Three clinical teams in Surrey and Sussex identified EBC patients due to enter SSM. Patients completed standardised questionnaires (separately reported) +/- semi-structured telephone interviews at baseline, 3, 6, 9 and 12 months. The interviews explored how confident patients felt managing their care, accessing services, managing side effects (SEs), and lifestyle changes.
Results
32/110 patients engaged in interviews; data are available for 30/32 at all timepoints. Participants were representative of the whole group in terms of demographics and treatment received. Patients understood the main reasons for SSM were to: a) assume responsibility for their follow up (18/32; 56%) and b) save time and money for them and the hospital (16/32; 50%). Most maintained (very/somewhat) confidence over time in managing their care and SEs, but were less confident identifying BC related signs/symptoms especially if screen detected. 19 patients contacted the SSM helpline +/- their GP. 15/19 found the helpline easy to use and 6/19 were seen by a healthcare professional. The main triggers for calling were for advice on signs/symptoms and managing SEs. 5/26 (19%) patients on endocrine therapy (ET) had stopped it completely. Most (29/32) were engaged in exercise before diagnosis, and 8/10 who discontinued during treatment resumed afterwards. The COVID-19 pandemic had a negative impact on exercise and socialising. The interviews’ free text provided a plethora of rich data. Qualitative analysis produced four overarching themes: 1) expectations and experiences, 2) emotional wellbeing, 3) clinical concerns, and 4) effect of COVID-19 pandemic.
Conclusions
SSM works for most EBC patients. Clinicians could explain that the helpline is available for psychosocial as well as physical concerns. BC teams may want to review how to help screen detected patients recognise BC related signs/symptoms, how to monitor adherence to ET and offer interventions for treatment related SEs.
Clinical trial identification
ISRCTN10777283.
Legal entity responsible for the study
University of Sussex.
Funding
Surrey & Sussex Cancer Alliance.
Disclosure
All authors have declared no conflicts of interest.
CN58 - Mapping the measurement of lymphoma survivors’ unmet needs and quality of life outcomes: Evidence for a lymphoma-specific questionnaire
- Vanessa Boland (Dublin, Ireland)
Abstract
Background
A pressing issue for cancer survivorship is the availability of care and resources for survivors. The assessment of survivors’ needs has advanced efforts to improve this. Evidence relating to lymphoma-specific cancer survivors and the measurement of their needs and quality of life outcomes is limited. While various instruments assessing cancer patients' needs and quality of life are available, finding the most relevant, lymphoma-specific and psychometrically rigorous instruments is needed to ensure that future care is responsive to survivors’ needs. Therefore, this research aimed to conduct an instrument development process and a content validity evaluation of the Living Beyond Lymphoma survey.
Methods
The development process involved a literature review; this identified the most psychometrical robust and appropriate instruments, which were assimilated into a useable form. Experts (n = 8) with lived experience or clinical expertise in lymphoma assessed the survey's clarity, relevance, and representativeness. Experts made suggestions, such as the addition or deletion of items. Content validity indices were calculated at the item level (I-CVI) and the scale level (S-CVI).
Results
The experts rated the living beyond lymphoma survey as clear (S-CVI/Ave = 0.94 excellent), relevant (S-CVI/Ave = 0.96 excellent) and representative (S-CVI/Ave = 0.94 excellent). Universal agreement for the scale (S-CVI/UA) was lower (range S-CVI-UA = 0.58 – 0.75 fair-good). There was strong evidence supporting the content validity of the living beyond lymphoma survey, providing a valid and comprehensive instrument for use in the assessment of lymphoma cancer survivors’ unmet needs and quality of life outcomes.
Conclusions
Given the excellent average scale agreement but fair to good universal agreement for the scale, the wide variation in experts’ backgrounds and experiences could inadvertently reduce control over item agreement. The instrument was considered helpful for assessing the needs and well-being of lymphoma cancer survivors.
Legal entity responsible for the study
The authors.
Funding
Trinity College Dublin.
Disclosure
A. Drury: Financial Interests, Personal, Full or part-time Employment: University College Dublin; Financial Interests, Institutional, Research Grant, I am a collaborator on the Pfizer-funded project ABC4Nurses, which is coordinated and managed by EONS: Pfizer; Non-Financial Interests, Invited Speaker: European Oncology Nursing Society; Non-Financial Interests, Advisory Role, I am an advisor on several EONS projects, including ABC4Nurses and RCC & HCC PROMS: European Oncology Nursing Society. All other authors have declared no conflicts of interest.