Editing Patient Pathways: Myeloma (section)

= Challenges myeloma cancer patients face during their treatment journey =

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== Challenges during diagnostic evaluation ==

A myeloma diagnosis can be a stressful and challenging time for patients. Support during this phase can significantly improve the patient’s emotional and physical condition.

Patients with myeloma face various challenges during diagnosis, such as physical, psychological, financial and professional difficulties and lack of information.

'''Physical challenges'''

'''Symptoms of the disease:''' nausea, vomiting or weight loss make it difficult to perform daily activities and can cause anxiety.

'''Psychological challenges'''

Fear of cancer diagnosis, uncertainty about treatment: fear of possible complications and side effects of treatment. The process of emotionally accepting a cancer diagnosis can be very stressful and challenging. The patient needs emotional support, which puts pressure on family and friends to provide support.

'''Social isolation:''' feeling isolated because of the illness and the need for privacy.

'''Financial and professional challenges'''

'''Absence from work:''' frequent medical check-ups and treatments can cause absence from work, which can affect career and financial stability. The costs of diagnostics and treatment, insufficient health insurance.

'''Lack of information'''

Patients often have difficulty finding reliable and understandable information about the disease, diagnostic procedures, treatment options and their rights.

Insufficiently clear communication with doctors: the complexity of medical terminology and lack of time during consultations can make it difficult to fully understand the diagnosis and treatment options.

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== Challenges during treatment ==

'''Physical challenges'''

'''Lack of energy:''' constant fatigue and exhaustion due to treatment and hormonal imbalance.

'''Problems with nutrition:''' Difficulties with food intake due to nausea, loss of appetite, or swallowing problems. Weight changes: weight gain or loss due to hormonal changes.

'''Hair loss (alopecia):''' Chemotherapy can cause temporary hair loss.

'''Anemia:''' Reduction in the number of red blood cells, which can cause fatigue and weakness.

'''Infections:''' Decreased white blood cells increase the risk of infections.

'''Scars:''' Aesthetic and functional consequences of surgical incisions.

'''Skin reactions:''' rash, itching and dry skin.

'''Psychological challenges'''

'''Fear and anxiety:''' fear of illness, treatment, side effects and uncertainty of outcome, anxiety related to regular check-ups and fear of recurrence. Depression: feelings of hopelessness, loss of interest in everyday activities, isolation. Changes in body self-awareness: discomfort due to physical changes, such as scars or weight changes.

'''Treatment-related stress:''' Psychological stress due to intense treatments and their impact on everyday life.

'''Relationship with partner:''' sexual problems, decreased libido and emotional distance due to illness.

'''Family Relationships:''' Tensions within the family due to stress, changes in roles and responsibilities.

'''Social Isolation:''' Withdrawal from social activities due to fatigue, discomfort, or fear of exposure to infections during therapy.

'''Financial and professional challenges'''

Reduced ability to work due to fatigue, side effects of treatment and emotional problems.

'''Absences from work:''' frequent medical visits and treatments that require absences from work, which can affect career and financial stability.

High costs of medicines, operations, therapies and other medical services, travel and accommodation costs for patients who have to travel to health care centers. Reduced income due to reduced work capacity or job loss. Ongoing costs associated with long-term follow-up and maintaining health.

'''Lack of information'''

The need to understand complex medical information and make informed decisions. Difficulties in making treatment decisions due to lack of reliable and understandable information or conflicting advice.

Ignorance of patient rights.

Lack of information about healthcare providers during treatment.

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== Challenges during rehabilitation and disease follow-up ==

'''Physical challenges'''

'''Chronic fatigue:''' Feeling exhausted that lasts for weeks or months after treatment is complete.

'''Muscle weakness:''' Reduced muscle strength due to physical inactivity during treatment.

'''Postoperative pain:''' Pain that lasts after surgery.

'''Chronic pain:''' Pain that occurs due to nerve or other tissue damage during treatment.

'''Insomnia:''' Difficulty sleeping, which can be caused by stress, pain, or side effects of treatment.

'''Nightmares and anxiety:''' Problems with emotional stress that affect sleep quality.

'''Psychological challenges'''

'''Fear of recurrence:''' ongoing fear of cancer recurrence. Anxiety and Depression: psychological stress and emotional problems associated with the experience of cancer. Social isolation: reduced social interaction due to fatigue, anxiety, or other symptoms.

'''Financial and professional challenges'''

'''Return to work:''' Difficulties returning to work due to physical and emotional limitations. Long-term financial burden associated with ongoing medical expenses.

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== Difficulties during palliative care ==

The difficulties faced by patients with myeloma in Croatia and their families during palliative care are multifaceted and encompass several key aspects:

'''Limited access to palliative care'''

There is a significant gap between the need for palliative care and available resources. Insufficient capacity of specialized palliative care providers.

'''Psychological challenges'''

The psychosocial and emotional burden of patients and their families is often significant. Family caregivers often face high levels of stress and emotional distress. Cultural and ethical issues: reluctance to discuss end-of-life issues can hinder the provision of effective palliative care. Ethical challenges in decision making and care provision can also create additional stress for families and healthcare professionals.

'''Financial challenges'''

The costs of care can be a significant burden for families, especially given the long-term nature of palliative care. Economic pressures can further exacerbate the stress experienced by patients and their families, impacting their overall well-being and quality of life. Challenges with care coordination: effective palliative care requires coordination among different healthcare providers. In Croatia, there are challenges related to care coordination between hospitals, palliative care units, and home care services. Addressing these challenges requires a comprehensive approach that includes improving access to palliative care, providing emotional and psychological support to families, addressing financial burdens, and ensuring effective care coordination. In addition, public education and awareness raising about the benefits of palliative care can help reduce cultural and ethical barriers.

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== Challenges patients face after completing myeloma treatment ==

'''Physical challenges'''

After completing treatment, survivors may experience long-term side effects, such as skin problems, cardiovascular problems, and urinary problems.

'''Psychological challenges'''

Cancer survivors often experience anxiety and fear of cancer recurrence, which can affect their emotional well-being. They may also face difficulties adjusting after treatment, including changes in daily routines and life plans. The role of family members as caregivers often changes after treatment is complete. Their support remains crucial, but adjustments may be needed to accommodate new circumstances and reduced care intensity.

'''Lifestyle and prevention:''' patients are encouraged to adopt healthy lifestyle habits, such as regular exercise, a healthy diet, not smoking, and stress management, to improve their quality of life and reduce the risk of cancer recurrence.

'''Financial and professional challenges'''

'''Return to work:''' Many survivors face challenges returning to work, including fatigue, reduced energy, and physical limitations after treatment. They need support in adapting to the work environment and managing employer expectations. Employers are often unaware of how to support cancer survivors returning to work.

'''Coordination of health care'''

'''Regular check-ups:''' It is important to continue with regular check-ups to monitor for cancer recurrence or treatment side effects. This includes blood tests and imaging tests such as ultrasound, depending on the risk of cancer recurrence.

Patients with myeloma face various challenges during their diagnostic, treatment and rehabilitation journey, including physical, psychological, financial and professional difficulties, lack of information, and coordination of health care.

Providing comprehensive support that includes medical care, psychological support, education and social services can significantly improve quality of life and treatment outcomes for these patients.

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