Patient experiences of living with chronic haematological malignancies and their interactions with Primary Care: qualitative investigation.

Abstract

Haematological malignancies are the fifth most common cancer in the UK. Aggressive subtypes are potentially curable; chronic variants (the most frequent diagnoses) are incurable, although can be successfully managed for many years with observation, interspersed with treatment if required, or with long-term oral therapy. Chronic subtypes involve uncertain pathways, long-term symptoms and psychological distress, which may emerge in primary care. To explore the experiences of patients living with chronic haematological malignancies, specifically regarding interactions with primary care. Fifty-two people with chronic haematological malignancies, including chronic lymphocytic leukaemia, myeloma and chronic myeloid leukaemia, were purposively sampled from the Haematological Malignancy Research Network; a population-based study set-up for research purposes, to improve clinical care. In-depth interviews were conducted, then analysed using thematic analysis. Patients spoke positively about diagnostic efficiency in primary care and trusting relationships shared with their GPs. However, some described GPs as lacking knowledge about their cancer and having limited involvement in their on-going management; along with problems accessing GPs and continuity of care. Many praised hospital clinicians, but could find it difficult to discuss their ongoing physical and psychosocial symptoms, and medication non-adherence with them. Given the rising prevalence of haematological malignancies, pressure on acute services and UK survivorship policy, care may be increasingly shared between secondary and primary care-settings. Challenges include complex shared-care models that lack guidance, workforce issues, and knowledge of haematological malignancies. However, the value patients placed on primary care, coupled with difficulties experienced in hospital clinics, indicate shared care could succeed.