Home service solution for patients treated symptomatically with intrathecal baclofen

Individuals with central nervous system conditions such as multiple sclerosis, cerebral palsy, spinal cord injuries, or stroke often experience severe spasticity. This condition, characterised by stiff and tight muscles, can significantly impair movement, cause pain, and lead to substantial disability. While oral baclofen is prescribed, it frequently causes systemic side effects which challenges achieving an optimal dose. Intrathecal baclofen (ITB) offers an effective alternative for managing severe spasticity, particularly for patients experiencing significant discomfort or pain. ITB involves a surgically implanted pump that requires regular refills administered in a hospital setting. Ensuring that patients and caregivers are well-informed about treatment protocols and potential risks is critical, as missed appointments or an empty pump can result in painful spasticity or even life-threatening conditions. Communication about treatment goals and individual needs is essential for optimal ITB outcomes. Patients with progressive conditions require ongoing assessment to adapt treatment to their changing needs. This is particularly important for patients in nursing homes or institutions or those with cognitive impairments, where staff often mediate communication with healthcare providers. However, many patients attend hospital appointments unaccompanied despite requiring physical or mental support. Transport to the hospital, often requiring specially equipped vehicles, can be time-consuming and may involve waiting time. This creates additional challenges for both patients and healthcare professionals, who may have limited resources to provide the necessary care and support during the waiting period. The potential of home-based treatment models has gained attention, particularly in light of challenges associated with hospital-based care. Home-based treatment, remote monitoring, and "hospital at home" approaches are increasingly recognised for their benefits but have limitations when applied to ITB treatment due to its specialised nature. During the Covid-19 pandemic, Odense University Hospital implemented temporary home consultations for ITB patients to reduce infection risks. Although hastily executed, this initiative provided valuable insights into patients' daily lives and highlighted the need for a more structured, evidence-based approach.

The study's primary objective was to enhance care and treatment for individuals undergoing ITB therapy. The specific aims were to:

1. Explore the experiences of patients, caregivers, and healthcare professionals regarding ITB treatment in hospital settings.

2. Investigate current practices for ITB treatment at the hospital, encompassing communication about treatment and hospital transportation.

3. Determine the need for enhancing care and treatment for patients undergoing ITB therapy.

4. Develop interventions based on identified patient, caregiver, and healthcare professional needs.

5. Evaluate the impact of interventions on patients' health-related quality of life.

6.Assess the economic implications of the developed solution compared to the current practices.

The study employed a participatory design approach implemented in three phases, utilising both qualitative and quantitative methods.

Sub-study 1 was a qualitative study employing semi-structured interviews with patients, caregivers, and healthcare professionals to examine experiences with ITB and communication regarding spasticity. Participant observations were conducted for patients travelling to and from the hospital for treatment.
Sub-study 2 involved the development of interventions to address identified needs through co-creation with patients, caregivers, healthcare professionals, and an IT specialist.
Sub-study 3 evaluated the developed solution qualitatively through semi-structured interviews with patients, caregivers, and healthcare professionals.
Sub-study 4 entailed an economic evaluation of the intervention and an assessment of patients' health-related quality of life using demographic data and questionnaires.

The study included 57 patients, along with their caregivers and healthcare professionals. Phase 1 interviews and participant observations revealed that transport to the hospital were challenging, unsettling, and time-consuming for patients, highlighting difficulties in addressing patient care needs during hospital visits. Enhanced communication between nurses and caregivers was identified as essential to integrate patients' perspectives into ITB treatment. These insights guided the development of a new workflow for ITB patients in home settings supported by technology. During Phase 2, patients, caregivers, and healthcare professionals participated in a co-creation process to develop a prototype of a new workflow and technology supporting the home service solution. Following prototype adjustments, offering consultations at home to all patients became feasible, mirroring the frequency of previous hospital consultations. Effective resource management was achieved through thorough planning and visit scheduling using a developed route- and appointment planning tool, complemented by nurses' input. In Phase 3, an evaluation of the new workflow and technology involved interviews with patients, caregivers, and healthcare professionals. The developed workflow builds on extensive research and experience with various hospital interventions in patients' homes, including home-based treatments and monitoring. Unlike solutions focused on home-monitoring systems where healthcare professionals remain off-site, this study involved nurses conducting consultations in the patients’ homes. This required a tailored approach that combined treatment and monitoring while also supporting and educating caregivers to understand and manage the ongoing assessment of the treatment's impact. Enhanced communication during home consultations empowered caregivers, enabling them to better comprehend treatments like ITB and advocate for patients effectively. Caregivers also provided valuable insights into patients' daily lives, fostering holistic and patient-centred care. Patients, caregivers, and healthcare professionals expressed satisfaction with the new workflow, appreciating the reduced burden of transport and improved collaboration. By aligning with patient preferences for receiving care in familiar surroundings, home-based interventions aim to enhance quality of life. While no significant changes in health-related quality of life were found in the questionnaires, participants in interviews highlighted the positive impact of home treatment on their overall well-being. Additionally, the cost-saving home service presents an appealing alternative for patients and caregivers managing logistical and resource challenges associated with hospital visits. This study contributes valuable insights into the potential of home-based hospital care to enhance patient-centred healthcare delivery.

This study provides valuable insights into the potential of home-based hospital care to enhance patient-centred healthcare delivery. By addressing logistical barriers and offering care in familiar surroundings, it promotes comfort and personalisation. The study also highlights the active role of caregivers in treatment and decision-making, fostering holistic and meaningful care and treatment. These findings suggest that home-based care is a feasible, cost-effective model that aligns closely with patients' needs and preferences, even in a very specific patient group requiring highly specialised treatment. The solution presented in this study thereby have the potential to inspire similar solutions in other patient groups with the need for specialised care and treatment at home.