Editing Patient Pathways: Leukemia (section)

= Supportive activities for patients with leukemia =

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 leukemia, helping them to more easily cope with the difficulties that the disease and treatment bring. Civil society organizations, such as patient associations and cancer organizations, can play a key role in informing patients about such supportive activities. Also, associations can organize and provide part of the necessary support to patients in order to reduce physical, psychological, financial and professional difficulties, the lack of verified and understandable information, and to strengthen the coordination of health care, not only within the health system. through activities aimed at actively involving patients in the development of better national health guidelines and policies.

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== Supportive activities provided by healthcare institutions ==

'''Supportive activities for physical challenges'''

Supportive activities for patients with leukemia within the health system include a wide range of services aimed at improving the overall quality of life of patients. In addition to health care that includes regular monitoring through blood tests, ultrasound, MRI or CT scans, and follow-up by specialist doctors, for optimal management of physical ailments, patients should have access to a multidisciplinary team of experts.

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

'''Oncologist:''' overall management of treatment

'''Dietitian:''' provides advice on nutrition and weight management.

'''Physiotherapist:''' pain management and improving 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 activities for psychological challenges'''

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

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

'''Informed consent:''' a signed form is proof that the 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 opinion:''' guaranteed by the Patient Rights Protection Act. The patient always has the right to seek a second opinion about their health status. A second opinion is mandatory for the patient, at their verbal or written request, from every healthcare professional of higher professional qualifications and appropriate specialization who was not involved in the direct provision of a certain type of health service to the patient. Apart from the patient, the doctor can also initiate the procedure for requesting a second opinion. In the case of diagnosing a rare disease, the inability to find (adequate) therapy, inadequate technological equipment of the health institution that prevents or makes it difficult to establish a diagnosis or the course of therapy, doctors often seek the help and confirmation of their colleagues from other institutions for the purpose of the highest quality approach to each patient.

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== Supportive activities provided by associations ==

'''Supportive activities 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 tips. Support related to symptoms of the disease: access to medical professionals for early intervention and treatment of symptoms. Organization of counseling centers where patients can receive advice from medical professionals and psychologists. Inclusion of 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 to personalize the patient’s nutritional plan and cooperation with fitness and nutrition experts for personalized recommendations for moderate exercise. Organizing practical workshops for proper nutrition, creating educational materials.

'''Supportive activities for psychological challenges'''

Offer free or subsidized psychological counseling, organize 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. Organization of support groups for conversation and exchange of experiences.

Organizing workshops and therapy groups that focus on body positivity and acceptance of change.

Providing free courses in meditation, yoga, and relaxation techniques. Creating online resources and applications to support stress management.

Associations can organize workshops for couples, including counseling with experts on sexual health.

Organizing family therapy sessions and workshops that involve all family members in the support process. Connecting with peer groups and social activities. Organization of social events, online forums and support groups where patients can connect and share their experiences.

'''Supportive activities for financial and professional challenges'''

Advice on labor rights and workplace adaptation. Providing legal advice and support for conversations with employers about adapting the workplace. Organizing workshops on workers’ rights.

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

Providing information on financial support, organizing fundraising campaigns, and helping with financial aid applications.

Connecting patients with social workers and providing free financial advice.

'''Supportive activities for providing reliable and understandable information necessary for informed participation in the treatment process'''

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

'''Supportive activities regarding patient rights'''

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

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