Editing Patient Pathways: Myeloma (section)

= Supportive care for myeloma patients =

A coordinated multidisciplinary approach to providing supportive care in healthcare settings is essential to helping patients throughout their treatment journey. Such an approach significantly improves the quality of life of patients with myeloma, helping them to cope more easily with the difficulties that the disease and treatment bring. Civil society organizations, such as patient associations and cancer charities, can play a key role in informing patients about such supportive activities. Likewise, associations can organize and provide, with the help of experts, part of the necessary support to patients in order to reduce physical, psychological, financial and professional difficulties, lack of verified and understandable information, and strengthening the coordination of healthcare not only within the health system but also through activities aimed at actively involving patients in the development of better national health guidelines and policies.

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== Support activities provided by institutions health care ==

'''Supportive care for physical challenges'''

Supportive care for myeloma patients within the healthcare system includes a wide range of services aimed at improving the overall quality of life of patients. In addition to medical care, which includes regular monitoring through blood tests, ultrasound, MRI or CT scans, and monitoring by specialist doctors, for optimal management of physical difficulties, patients should have access to a multidisciplinary team of specialists.

'''General practitioner:''' takes care of daily health needs during and after treatment

'''Oncologist:''' overall treatment management

'''Dietitian:''' nutrition counseling and weight management.

'''Physiotherapist:''' pain management and improved mobility.

'''Psychologist:''' helps with emotional issues

'''Oncology nurses:''' care for you before, during, and after treatment, provide information about your daily treatment plan, and teach you how to use aids.

'''Supportive care for psychological challenges'''

Cancer patients and their families almost inevitably face numerous psychological difficulties throughout the entire therapeutic journey. Professional psychological help in the form of individual counseling, group therapy, counseling with a partner and family counseling is a key part of support for oncology patients. Also, a psychiatrist can recommend psychopharmacotherapy as a support for patients.

'''Supportive care for providing reliable and understandable information'''

'''Informed Consent:''' A signed form is proof that a conversation in which the doctor provides the patient with information about diagnostic and therapeutic procedures, risks, complications, and alternative treatments has led to mutual understanding. Detailed but easy-to-understand educational content for patients is essential in this process, but often not available.

'''Right to a second medical opinion:''' guaranteed by the Patient Rights Protection Act. The patient always has the right to seek a second medical opinion on their state of health. Every healthcare professional with a high level of professional qualifications and appropriate specialization who was not involved in the direct provision of a certain type of healthcare service to the patient is obliged to give a second medical opinion to the patient at the patient’s verbal or written request. Apart from the patient, the doctor is the one who can initiate the procedure of seeking a second opinion. In the case of diagnosis of a rare disease, inability to find (adequate) therapy, inadequate technological equipment of the healthcare institution that prevents or makes it difficult to establish a diagnosis or the course of therapy, doctors often seek help and confirmation from their colleagues from other institutions for the purpose of the highest quality approach to each patient.

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== Supportive care provided by associations ==

'''Supportive care for physical challenges'''

'''Support related to side effects of treatment:''' organizing workshops and informative activities that educate patients on ways to manage side effects. Providing brochures and online resources with practical advice.

'''Support related to symptoms of the disease:''' access to medical professionals for early intervention and treatment of symptoms. Organizing counseling centers where patients can get advice from medical professionals and psychologists. Including medical advisors in support programs.

'''Support related to metabolic disorders, eating problems and lack of energy:''' connecting patients with nutritionists and endocrinologists through organized events and online consultations for personalizing the patient’s dietary plan and collaborating with fitness and nutrition experts for personalized recommendations for moderate exercise. Organizing practical workshops for proper nutrition, creating educational materials.

'''Supportive care for psychological challenges'''

Offering free or subsidized psychological counseling, organizing support groups and telephone lines for psychological support. In the case of depressive disorders, support in finding a psychiatrist and therapist, and cooperation between associations and them. Organizing support groups for talking and sharing experiences. Organizing workshops and therapy groups that focus on body positivity and accepting change. Providing free meditation, yoga and relaxation techniques courses. Creating online resources and apps to support stress management. Associations can organize workshops for couples, including counseling with sexual health professionals. Organizing family therapy sessions and workshops that involve all family members in the support process. Connecting with peer groups and social activities. Organizing social events, online forums and support groups where patients can connect and share their experiences.

'''Supportive care for financial and professional challenges'''

Advice on employment rights and workplace adjustments. Providing legal advice and support for talking to employers about workplace adjustments. Organizing workshops on worker rights.

Connecting patients with financial advisors and organizing workshops on managing finances during treatment.

Providing information about financial support, organizing fundraising campaigns, and helping to apply for financial assistance. Connecting patients with social workers and providing free financial counseling.

'''Supportive care for providing reliable and understandable information needed for informed participation in the treatment process'''

'''Understanding the disease and treatment:''' education and information materials. Organizing educational seminars and workshops with medical professionals. Distribution of brochures and online resources about the disease and treatment.

'''Supportive care for patient rights'''

Provides information on rights and social assistance options. You can find everything about patient rights at this link of the IGET association - Institute for Gastroenterological Tumors: https://iget.hr/prava-osoba-oboljelih-od-onkoloskih-bolesti/

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