Patients’ experience with home parenteral therapy: results from a qualitative survey

Introduction:Patients are increasingly being sent home with parenteral (injectable) therapy to continue for an extended period or lifelong. A literature review showed a lack of research into patients’ preparation and training on injectable medications outside of the hospital setting, its impact on their experience with therapy, and their health outcomes. Some evidence suggests that the patients might achieve competence with their home parenteral therapy but may not achieve confidence. Providing continuous access to advice can boost confidence, but patients’ information needs of not always met. Poor communication can leave patients lacking the knowledge and confidence needed to be competent collaborators in their care and affect their perceptions of the service, even with positive health outcomes. Medical decisions are delegated to non-medically trained individuals when patients can be treated at home. New home care patients are often overwhelmed during the first few days following discharge home. Early studies focused on the clinical outcomes and complications of the treatment rather than the patient experience. Home parenteral therapy (HPT) effect on quality of life has been studied globally in the United States of America, Australia, Canada, and Japan but not in the United Kingdom (UK).
Objectives:To explore if patients’ experience with self-management and HPT matches the expectation of the healthcare professionals who requested it, intending to develop a better patient education programme on HPT and suggest strategies and guidelines for improving homecare service in the UK.
Methods: A qualitative study was conducted using a semi-structured phone interview with 45 consented patients identified as being on HPT for various medical issues (multiple sclerosis, atopic dermatitis, inflammatory bowel disease, psoriasis, high cholesterol and intestinal failure). Audio recordings were transcribed verbatim, anonymised and managed using NVivo software. Data were explored using an inductive thematic analysis approach to identify key themes relating to patients’ experiences and perceptions of the strengths and challenges of HPT.
Results: Patients reported various strengths and positive experiences with HPT while identifying several challenges. Specific challenges included: perceived lack of support, guidance, training, reassurance, and follow-up; concerns about injecting the drug (fear of injections, concerns about side effects, injection site problems, troubleshooting); problems with travelling and special storage requirements; challenges with access to information; scepticism towards treatment options; problems with home deliveries or supply; and various communication issues.
Conclusions: The qualitative information gathered from the patient interviews identified areas of improvement and will be used to create an HPT training package concept and to suggest strategies for improving homecare service in the UK.