Abstract
ObjectivesPatients with chronic haematological cancers are often treated on a relapsing-remitting pathway, which may extend for many years. Such diagnoses are associated with uncertainties that often cause anxiety and distress, meaning patients (and families) are susceptible to potentially prolonged emotional difficulties, across the cancer journey. Experiences and preferences regarding psychosocial needs and support over time are relatively unexplored, which this study aimed to address.Setting and designSet within the UK’s Haematological Malignancy Research Network (an ongoing population-based cohort that generates evidence to underpin improved clinical practice) a qualitative, exploratory study was conducted, using semistructured interviews. Reflexive thematic analysis was used to assess the interview data via an exploratory, inductive approach, underpinned by the research questions.ParticipantsThirty-five patients were included with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma; 10 of whom were interviewed alongside a relative.ResultsFive themes were identified from the data: (1) accessing support, (2) individual coping behaviour affecting support preferences, (3) divergent and fluctuating thoughts on patient support forums, (4) the role, influence and needs of family and friends and (5) other sources of support and outstanding needs. Findings suggest that patients’ individual attitudes towards support varied over time. This also influenced whether support was perceived to be available, and if it was then used.ConclusionThis study highlighted the variation in preferences towards psychosocial support among patients with chronic haematological cancers. As patients can live for many years with significant emotional difficulties, they may benefit from frequent monitoring of their psychosocial well-being, as well as signposting to holistic support, if this is needed.
Funder
National Institute for Health and Care Research
Cancer Research UK
Blood Cancer UK
Reference61 articles.
1. Swerdlow S , Campo E , Harris N , et al . WHO Classification of Tumours of Haematopoietic and Lymphoid Tissues. Lyon, France: World Health Organisation, 2017.
2. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries
3. Office for National Statistics . Cancer registration Statistics England. 2017. Available: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/datasets/cancerregistrationstatisticscancerregistrationstatisticsengland
4. Haematological Malignancy Research Network . Statistics. 2022. Available: https://hmrn.org/statistics/incidence [Accessed Jun 2023].
5. Howell DA , McCaughan D , Smith AG , et al . Incurable but treatable: understanding, uncertainty and impact in chronic blood cancers—A qualitative study from the UK’s haematological malignancy research network. PLOS ONE 2022;17:e0263672. doi:10.1371/journal.pone.0263672