Editing Patient Pathways: Leukemia

<span id="leukemia"></span>
= Leukemia =

Leukemia is a malignancy of the blood-forming tissue that affects white blood cells and their production in the bone marrow. In most cases, malignant transformation occurs in white blood cells, although it can also occur in other cells involved in blood formation. White blood cells, leukocytes, participate in the body’s defense against possible infectious and other pathogenic organisms. The creation and destruction of bone marrow cells is a strictly controlled process that involves several mechanisms, some of which are still unknown. In leukemia, there is a disorder of the regulatory mechanisms, which is manifested by the excessive growth and proliferation of white blood cells and their precursor cells. Malignant white blood cells do not look normal nor do they perform their normal function. Due to the uncontrolled growth of malignant cells, there is a suppression of normal cells in the bone marrow, which consequently causes their lower production and deficiency in the peripheral blood.

In Croatia, as in the rest of the world, leukemia represents a significant health challenge. According to the Croatian Institute of Public Health, between 250 and 300 new cases of leukemia are diagnosed in Croatia every year. The prevalence of leukemia in the country indicates a trend of stable incidence with a slight increase in some age groups. Leukemia affects both children and adults, with a slightly higher incidence in older people. Mortality from leukemia varies depending on the type and stage of the disease.

Acute myeloid leukemia (AML) has a high mortality rate if not treated immediately, while chronic forms, such as chronic lymphocytic leukemia (CLL), often have a slower course and better prognosis. Despite advances in treatment, leukemia remains one of the leading causes of death from malignant diseases in Croatia.

Leukemia is a serious health problem in Croatia, but thanks to advances in medicine and the availability of modern therapies, many patients have better prognoses than ever before. Continuous investment in the health system, education of medical personnel and access to the latest therapeutic options are key to further improving the outcomes of leukemia treatment in Croatia.

Leukemias are primarily divided into two large groups. One group is acute leukemias, and the other is chronic. Each of these groups is divided into two types. Depending on the type of bone marrow cells that are affected by malignant transformation, leukemias are divided into lymphocytic and myeloid. These are the four main types of leukemia:

* acute lymphocytic (lymphoblastic),
* acute myeloid,
* chronic lymphocytic and
* chronic myeloid leukemia, which are biologically and clinically very different diseases.

<span id="patient-pathway"></span>
= Patient pathway =

Creating a comprehensive plan for the treatment of leukemia includes steps from the initial presentation and diagnosis to treatment and follow-up. Below is a detailed plan:

<span id="diagnostics"></span>
== 1. Diagnostics ==

The patient presents with symptoms of frequent infections, chills, fever or chills, fatigue, weakness and malaise, loss of appetite, swollen lymph nodes, bone pain.

Consultation with a general practitioner (GP): The patient visits a general practitioner.

Medical history and physical examination: Detailed medical history of the patient.

Initial tests: gynecological examination, pap test, HPV testing.

'''Referral to a specialist'''

Referral to a radiologist and oncologist.

'''Diagnostic evaluation'''

'''Physical examination:''' Examination to identify signs of anemia (pale skin), bleeding (bruising, petechiae), swollen lymph nodes, spleen, and liver.

'''Laboratory tests'''

'''Complete blood count (CBC):''' Detects abnormal levels of white blood cells, red blood cells, and platelets. It can show an increase or decrease in the number of cells and abnormal cell shapes.

'''Blood smear with differential:''' Detailed analysis of the type of white blood cells and their distribution.

'''Bone marrow aspiration and biopsy:''' Taking a sample of bone marrow for microscopic examination to detect abnormal growth of white blood cells. This procedure helps to diagnose the type of leukemia and its activity.

'''Cytogenetic and Molecular Studies'''

'''Cytogenetic analysis:''' Determines the presence of chromosomal abnormalities, such as the Philadelphia chromosome in CML or specific chromosomal changes in AML and ALL.

'''Molecular tests:''' Identify specific genetic mutations and markers that help in diagnosis and predict response to therapy.

'''Immunophenotyping'''

'''Fluorescent antibodies:''' Used to identify specific surface markers on cells that help classify the type of leukemia (e.g. CD markers in lymphoblastic leukemia).

'''Lumbar puncture'''

'''Lumbar puncture:''' Taking a sample of cerebrospinal fluid to check for the presence of leukemia cells in the central nervous system.

'''Radiological Examinations'''

'''X-ray and CT scan:''' Used to view the size of lymph nodes, spleen, and liver and to assess the spread of the disease in the body.

'''MRI and PET scan:''' Used for a more detailed assessment of the condition and activity of the disease.

'''Cardiac and Hepatic Evaluation'''

'''Echocardiography and liver function tests:''' These tests may be needed before starting treatment to assess general health and organ function due to possible side effects of therapies.

'''Lymphangiography:''' In some cases, it is used to show lymph nodes in the groin and pelvis to determine if they are affected by cancer.

'''Histopathological analysis:''' The biopsy sample is analyzed under a microscope to confirm the presence of cancer and determine the type and stage of the disease.

<span id="treatment"></span>
== 2. Treatment ==

'''Multidisciplinary Team (MDT) meeting'''

'''MDT discussion:''' Review of diagnostic findings with specialists including endocrinologists, surgeons, oncologists, radiologists, and pathologists.

'''Treatment plan development:''' Based on the stage of leukemia and the patient’s overall health.

'''Treatment options'''

'''Acute Lymphoblastic Leukemia (ALL)'''

'''Chemotherapy:'''

'''Induction of remission:''' The initial phase of treatment to reduce the number of leukemia cells in the blood and bone marrow. It consists of high doses of chemotherapy drugs.

'''Consolidation:''' A procedure to eliminate remaining leukemia cells and achieve long-term remission.

'''Maintenance:''' Long-term chemotherapy to prevent the disease from coming back.

'''Radiation therapy:'''

'''CNS prophylaxis:''' Radiation of the brain and spinal cord may be necessary to prevent leukemia in the central nervous system, especially in patients at high risk of CNS involvement.

'''Biological therapy:'''

'''Immunotherapy:''' Using monoclonal antibodies or other immunotherapies to target leukemia cells.

'''Stem cell transplantation:'''

'''Autologous transplantation:''' Using the patient’s own stem cells, usually after intensive chemotherapy.

'''Allogeneic transplantation:''' Taking stem cells from a donor, often after high doses of chemotherapy and/or radiation.

'''Acute Myeloid Leukemia (AML)'''

'''Chemotherapy:'''

'''Induction of remission:''' A combination of drugs to rapidly eliminate leukemia cells from the blood and bone marrow.

'''Consolidation:''' Continuation of chemotherapy to prevent the disease from coming back and eliminate remaining leukemia cells.

'''Radiation therapy:'''

'''Radiation:''' Used in specific situations, such as cases with a large number of leukemia cells in certain organs.

'''Targeted therapy:'''

'''Targeted therapy:''' Using drugs that target specific molecular abnormalities within leukemia cells.

'''Stem cell transplantation:'''

'''Autologous or allogeneic transplantation:''' Recommended for patients at high risk of relapse, often after high-dose chemotherapy.

'''Chronic Lymphocytic Leukemia (CLL)'''

'''Stage classification:'''

'''Early stage:''' Can only be monitored (active monitoring) without the need for immediate treatment. Advanced stage: Treatment is started when symptoms worsen or the disease spreads.

'''Chemotherapy and biological therapy:'''

'''Chemotherapy:''' A combination of drugs that reduce the number of leukemia cells.

'''Biological therapy:''' Drugs such as monoclonal antibodies (e.g. rituximab) that target specific markers on CLL cells.

'''Targeted therapy:'''

'''Targeted therapy:''' Drugs that block specific molecular pathways needed for leukemia cell growth and survival (e.g. kinase inhibitors).

'''Stem cell transplantation:'''

'''Allogeneic transplantation:''' Considered for patients with aggressive disease or those who do not respond to other treatments.

'''Chronic Myelogenous Leukemia (CML)'''

'''Targeted therapy:'''

'''Tyrosine kinase inhibitors (TKIs):''' Drugs such as imatinib (Gleevec), dasatinib, and nilotinib that target the Philadelphia chromosome and block signaling pathways used by leukemia cells for growth and survival.

'''Chemotherapy:'''

'''Chemotherapy:''' It can be used in combination with TKIs in certain cases, especially if the disease is not controlled with TKIs.

'''Stem cell transplantation:'''

'''Allogeneic transplantation:''' May be considered if TKIs are not working or if the disease cannot be controlled.

<span id="after-treatment-follow-up-rehabilitation-and-survival"></span>
== 3. After treatment: follow-up, rehabilitation and survival** ==

'''Follow-up'''

'''Regular Checkups:'''

'''Blood tests:''' Complete blood count (CBC), including tests to check the number of white blood cells, red blood cells, and platelets, as well as specific tests to detect recurrence or side effects of treatment.

'''Bone marrow biopsy:''' Periodic bone marrow evaluation to check if the disease is in remission or has recurred.

'''Molecular and cytogenetic tests:''' Monitoring of specific genetic markers and chromosomal abnormalities to assess disease status and treatment effectiveness.

'''Clinical Examinations:'''

'''Physical examinations:''' Routine examinations to assess the patient’s general health, check for possible side effects of therapy, and monitor for any new symptoms.

'''Immunological Tests:'''

'''Immune function tests:''' Monitoring immune function, especially in patients who have undergone intensive therapies that can weaken the immune system.

'''Monitoring Organic Functions:'''

'''Liver and kidney function tests:''' Monitoring the function of these organs due to possible side effects of treatment.

'''Rehabilitation'''

'''Physical Rehabilitation:'''

'''Exercise:''' Customized exercise programs to improve strength, endurance, and overall fitness after treatment. This may include aerobic exercise, strength training, and flexibility exercises.

'''Physiotherapy:''' Specific therapies for the rehabilitation of functional abilities, such as exercises to improve movement, balance, and coordination.

'''Psychosocial Support:'''

'''Psychological support:''' Counseling and therapy to help overcome emotional and psychological challenges after treatment.

'''Support groups:''' Participation in support groups for patients with leukemia and their families to share experiences and provide emotional support.

'''Nutritional Support:'''

'''Diet and nutrition:''' Working with a nutritionist to ensure a balanced diet that supports recovery, maintains body weight, and improves overall health.

'''Post-transplant Rehabilitation:'''

'''Post-transplant care:''' Monitoring and managing specific side effects and complications after stem cell transplantation, including infections, graft-versus-host disease (GVHD), and organ function rehabilitation.

'''Survival'''

'''Long-Term Follow-up:'''

'''Recurrence monitoring:''' Regular examinations and monitoring for early detection of leukemia recurrence.

'''Health monitoring:''' Continuous monitoring of overall health and treatment of any long-term side effects or complications associated with therapy.

'''Adapting to Life:'''

'''Returning to everyday life:''' Help in adapting to changes in lifestyle, including returning to work, education and social activities.

'''Planning for the future:''' Counseling and planning regarding future health risks, including regular medical checkups and lifestyle changes.

'''Quality of life:'''

'''Symptom control:''' Managing any long-term symptoms or side effects of treatment to improve quality of life.

'''Family and friend support:''' Engaging family and friends in the recovery and adjustment process.

<span id="palliative-care-if-applicable"></span>
== 4. Palliative care (if applicable) ==

'''Palliative treatments:''' To relieve symptoms and improve quality of life in advanced cancer.

'''Pain management:''' Medications, nerve blocks.

'''Symptom control:''' Management of shortness of breath, pain, etc.

'''Hospice care:''' For end-of-life care if curative treatment is no longer an option.

<span id="challenges-leukemia-patients-face-during-their-treatment-journey"></span>
= Challenges leukemia patients face during their treatment journey =

'''Challenges during diagnostic evaluation'''

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

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

'''Physical challenges'''

'''Symptoms of the disease:''' fatigue, bleeding, bruising, bone pain, fever, frequent infections and swollen lymph nodes can cause anxiety.

'''Psychological challenges'''

Fear of a cancer diagnosis, uncertainty about treatment: fear of possible complications and side effects of treatment. The process of emotional acceptance of 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 checkups and treatments can cause absence from work, which can affect careers and financial stability. The cost 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.

<span id="challenges-during-treatment"></span>
== Challenges during treatment ==

'''Physical challenges'''

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

'''Nutritional problems:''' Difficulty eating due to nausea, loss of appetite, or problems swallowing. Weight changes: weight gain or loss due to hormonal changes.

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

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

'''Infections:''' A decrease in the number of white blood cells increases 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 checkups and fear of recurrence.

'''Depression:''' feelings of hopelessness, loss of interest in everyday activities, isolation.

'''Changes in body image:''' discomfort due to physical changes, such as scars or weight changes.

'''Stress due to treatment:''' Psychological stress due to intensive treatments and their impact on everyday life.

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

'''Family Relationships:''' Tension within the family due to stress, role changes, 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 careers 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 monitoring and health maintenance.

'''Lack of information'''

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

Ignorance of patient rights.

Lack of information on healthcare providers during treatment.

<span id="challenges-during-rehabilitation-and-disease-monitoring"></span>
== Challenges during rehabilitation and disease monitoring ==

'''Physical challenges'''

'''Chronic fatigue:''' A feeling of exhaustion that lasts for weeks or months after the end of treatment.

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

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

'''Chronic pain:''' Pain that occurs due to damage to nerves or other tissues during treatment.

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

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

'''Swelling:''' Usually in the arms or legs, caused by the removal of lymph nodes or radiation.

'''Psychological challenges'''

'''Fear of recurrence:''' Ongoing fear of cancer coming back.

'''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.

<span id="challenges-during-palliative-care"></span>
== Challenges during palliative care ==

The challenges faced by patients with leukemia in Croatia and their families during palliative care are multifaceted and cover 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 on patients and their families is often great. Family caregivers often face high levels of stress and emotional burden. Cultural and ethical issues: reluctance to discuss end-of-life issues can hinder the provision of effective palliative care. Ethical challenges in making decisions and providing care can also create additional stress for families and healthcare professionals.

'''Financial challenges'''

The cost of care can be a significant burden on families, especially when considering the long-term nature of palliative care. Economic pressures can exacerbate the stress experienced by patients and their families, affecting their overall well-being and quality of life. Challenges with care coordination: Effective palliative care requires coordination between different healthcare providers. In Croatia, there are challenges related to the coordination of care 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 of the benefits of palliative care can help reduce cultural and ethical barriers.

<span id="challenges-patients-face-after-completing-leukemia-treatment"></span>
== Challenges patients face after completing leukemia treatment ==

'''Physical challenges'''

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

'''Psychological challenges'''

Cancer survivors often experience anxiety and fear of cancer recurrence, which can affect their emotional well-being. They can also face difficulties in adapting after treatment, including changes in daily routines and life plans. The role of family members as caregivers often changes after treatment ends. Their support remains crucial, but they may need to adjust to the new circumstances and reduced intensity of care. Lifestyle and prevention: patients are encouraged to adopt healthy lifestyle habits, such as regular exercise, a healthy diet, not smoking and stress management, in order 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, decreased 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 provide support to cancer survivors upon their return to work.

'''Healthcare coordination'''

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

Patients with leukemia face various challenges during their diagnostic, therapeutic and rehabilitative 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 the quality of life and treatment outcomes for these patients.

<span id="supportive-activities-for-patients-with-leukemia"></span>
= 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.

<span id="supportive-activities-provided-by-healthcare-institutions"></span>
== 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.

<span id="supportive-activities-provided-by-associations"></span>
== 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/

<span id="examples-of-successful-supportive-activities-of-croatian-associations"></span>
= Examples of successful supportive activities of croatian associations =

Civil society organizations and patient associations play a vital role in providing support to patients with leukemia. These groups often offer peer support systems where patients can connect with others going through similar experiences, providing a sense of community and understanding.

They can also organize educational workshops and seminars to inform and educate patients to empower them to actively participate in the treatment process.

Patient associations are also active in health and social care systems policies through raising public and policy makers’ awareness of patient needs, and patients about their rights.

A large number of civil society organizations operate in Croatia that provide support to cancer patients. A larger number of associations in Croatia are listed in the directory, while we single out a few of them here:

'''Association of Leukemia and Lymphoma Patients of Croatia (UOLLH)'''

Address: Mlinovi 3, 10000 Zagreb

Contact:

Telephone: +385 (0)1 45 64 771

E-mail: info@leukemija.hr

Website: www.leukemija.hr

'''Association for Helping Cancer Patients “We are not alone”'''

Address: Trg bana Jelacic 10, 10000 Zagreb

Contact:

Telephone: +385 (0)1 46 55 466

E-mail: info@nismosame.hr

Website: www.nismosame.hr

'''Croatian League Against Cancer (HLPR)'''

Address: Kolodvorska 1, 10000 Zagreb

Contact: Telephone: +385 (0)1 46 51 242

E-mail: info@hlpr.hr

Website: www.hlpr.hr

'''Association for the Support of Cancer Patients “Pink Ribbon”'''

Address: Frane Petrića 4, 21000 Split

Contact:

Telephone: +385 (0)21 34 55 65

E-mail: info@ruzicastavrpca.hr

Website: www.ruzicastavrpca.hr

'''Association “Nada” - Rijeka'''

Address: Pavla Jurisića Spanjola 15, 51000 Rijeka

Contact:

Telephone: +385 (0)51 21 12 34

E-mail: nada@udruga-nada.hr

Website: www.udruga-nada.hr

'''Association “Together”'''

Address: Gundulićeva 5, 20000 Dubrovnik

Contact:

Telephone: +385 (0)20 31 12 33

E-mail: info@udruga-zajedno.hr

Website: www.udruga-zajedno.hr

Website: nismosame.hr

<span id="available-supportive-content-for-cancer-patients"></span>
= Available supportive content for cancer patients =

The Croatian translation of several patient guides was carried out by the Association of Women with Cancer SVE za NJU based on the approval of the European Society for Medical Oncology (ESMO).

'''ESMO Patient Guide Life with Cancer'''

This Living with Cancer patient guide was produced by the European Society for Medical Oncology (ESMO) and the European Cancer Patient Coalition (ECPC) in collaboration with the International Psycho-Oncology Society (IPOS) to help you and those like you during this important time in your life.

In this Guide you can find information about support in coping with the new reality of life, life after basic treatment, preventive care and long-term follow-up. It will also help you keep a personal health record, i.e. plan your healthcare during your life with cancer.

The guide was translated by Dea Ajduković, PhD, and the translation was reviewed by Natalija Dedić Plavetić, PhD, MD, specialist in internal oncology, and on behalf of patients, psychologist Ljiljana Vukota from the SVE za NJU association.

https://www.esmo.org/content/download/131276/2458900/1/ESMO-Vodic-za-Bolesnike-Zivot-s-Rakom.pdf

'''ESMO Personalized medicine in oncology: A patient’s guide'''

This patient guide was launched by the ESMO Personalized Medicine Working Group to help patients, family members and friends better understand the factors that may influence a personalized approach to cancer prevention, diagnosis and treatment.

This brochure presents the current knowledge about the basic principles of personalized medicine, illustrating its application to several types of tumors. Personalized medicine represents the future of cancer treatment, and for it to become a reality in the near future and enable better cancer therapy, the role of the patient is crucial.

In this expanding and developing approach, ESMO is committed to educating patients so they can better understand its key principles and their own contribution to advancing therapy.

The Croatian translation of the Guide was made possible by the Association of Women with Cancer SVE za NJU based on the approval of the European Society for Medical Oncology (ESMO). The text of the Croatian translation was reviewed by: Prof. Ljiljana Šerman, Prof. Floriana Bulić-Jakuš and Mrs. Ljiljana Vukota.

https://www.esmo.org/content/download/385655/7486427/1/HR-Personalizirana-Medicina-u-Onkologiji-Vodic-za-Bolesnike.pdf

'''ESMO Immune-Related Adverse Events Management: A Patient’s Guide'''

This guide is designed to help you and your family, friends, and caregivers better understand immune-related side effects and their management. It provides information about the most common toxicities associated with modern immunotherapies (known as “immune checkpoint inhibitors”), how your oncology team can manage those symptoms, and some steps you can take yourself to minimize their effects. The medical information described in this document is based on ESMO Clinical Practice Guidelines for the Management of Immunotherapy Toxicity, which are designed to assist clinicians in diagnosing, treating and monitoring these events. All ESMO clinical practice guidelines are prepared and reviewed by leading experts using evidence from the latest clinical trials, scientific research and expert opinion.

The Croatian translation of the guide was reviewed by: a representative of the Croatian Society for Internal Oncology: Doc. Dr. sc. Natalija Dedić Plavetić, representative of the Croatian Thoracic Society: prof. Dr. sc. Marko Jakopović, representative of the Association of Women with Cancer SVE za NJU: Ljiljana Vukota.

'''ESMO Cancer treatment during the Covid-19 pandemic: A guide for patients'''

The guide contains information about the disease COVID-19 and its symptoms, as well as measures you can take to reduce the risk of infection. Also, the guide provides information on the impact of the COVID-19 pandemic on various aspects of cancer treatment, including possible changes to your treatment plan and medical examinations that may be necessary to protect yourself from infection.

The Croatian translation was reviewed by: Prim. Dr. sc. Paula Podolski, president of the Croatian Senological Society, Doc. Dr. sc. Borislav Belev, internist oncologist, National Representative of the Croatian Society for Internal Oncology at ESMO and Ljiljana Vukota, representative of the SVE za NJU association.

http://www.svezanju.hr/lijecenje-raka-tijekom-pandemije-covid-19-esmo-vodic-za-bolesnike/

'''ESPEN practical guideline: Clinical Nutrition in cancer'''

Malnutrition is common in cancer patients and is a consequence of the presence of the tumor and medical and surgical anti-cancer treatments.

Malnutrition negatively affects the quality of life and toxicity of treatment, and it is estimated that up to 10-20% of cancer patients die from the consequences of malnutrition, not from the tumor itself. Therefore, nutrition plays a key role in multimodal cancer treatment.

Strong evidence shows that nutritional problems should be considered from the time of cancer diagnosis, within the diagnostic and therapeutic pathway, and should run concurrently with anticancer treatment. However, worldwide, cancer-related malnutrition is still largely under-recognized, under-appreciated, and under-treated in clinical practice.

These evidence-based guidelines have been developed to translate the current best evidence and expert opinion into recommendations for multidisciplinary teams responsible for identifying, preventing, and managing reversible elements of malnutrition in adult cancer patients.

<span id="directory-of-associations-offering-supportive-activities-to-cancer-patients"></span>
= Directory of associations offering supportive activities to cancer patients =

<span id="zagreb"></span>
== Zagreb ==

'''Croatian League Against Cancer'''

Offer: Psychological support, support groups, education, financial assistance.

Contact:

Address: Ilica 197, 10000 Zagreb

Telephone: +385 1 3775 572, 099 5361 386

Email: info@hlpr.hr

Web: https://www.hlpr.hr

'''Association Institute for Gastrointestinal Tumors (Iget)'''

Activities: counseling, education, campaigns for the promotion of healthy lifestyles, connecting patient associations and medical professionals, developing informative content for patients

Contact:

Address: Ilica 197, 10000 Zagreb

Telephone: +385 955578 587

Email: info@ iget.hr

Web: https://iget.hr

'''Association EVERYTHING for HER'''

Offer: Psychological support, education, information, support groups.

Contact:

Address: Kneza Mislava 10, 10000 Zagreb

Telephone: +38516418765

Email: info@svezanju.hr

Web: http://svezanju.hr

'''Coalition of Associations in Healthcare (KUZ)'''

Advocacy for Patient Rights: KUZ is engaged in protecting patient rights and representing their interests before healthcare institutions.

Education: Organization of workshops and lectures on patient rights.

Public Campaigns: Campaigns to raise awareness of patient rights and better access to healthcare services.

Consulting: Providing legal and administrative support to patients.

Contact:

Address: Trpimirova 11, 10000 Zagreb

Telephone: +385 1 4572 100

Email: President Ivica Belina: ivica.belina50@gmail.com

Web: https://www.kuz.hr/

'''Croatian Society of Prostate Cancer Patients (HDBRP)'''

Activities: Providing psychological support, counseling and information to patients with prostate cancer and their families, organizing lectures, distributing educational materials, and campaigns to raise awareness about prostate cancer prevention and early detection, organizing support groups where patients can share their experiences and receive emotional support, campaigns to raise awareness of prostate cancer and the importance of regular checkups.

Contact:

Address: Ilica 65/1, 10000 Zagreb

Telephone: not listed

Email: info@hdbrp.hr

Web: https://www.hdbrp.hr

'''Association for Thyroid Patients'''

Activities: Providing individual and group psychological support to patients with thyroid diseases, organizing workshops, lectures, and distributing educational materials about thyroid diseases, advising and supporting patients in the process of rehabilitation after treatment, campaigns to raise awareness about thyroid diseases and the importance of early detection and treatment, information platform that provides advice on nutrition, treatment and symptom management.

Contact:

Address: Ulica Frane Petrića 5, 10000 Zagreb

Telephone: +38513464 723

Email: udruga.stitnjaca@gmail.com

Web: https://stitnjaca.eu/

'''Krijesnica Association'''

Offer: Psychological support, legal assistance, financial assistance, workshops.

Contact:

Address: Prilaz Gjure Dežalić 50, 10000 Zagreb

Telephone: +385 1 3770 477

Email: info@krijesnica.hr

Web: https://krijesnica.hr/

<span id="split-dalmatia-county"></span>
== Split-Dalmatia County ==

'''County League Against Cancer - Split'''

Offer: Education, support groups, psychological help.

Contact:

Address: Spinčićeva 1, 21000 Split

Telephone: 021 556 476

Email: office@zlpr.hr

Web: https://www.zlpr.hr/liga/

'''Croatian Association for the Promotion of Patient Rights'''

Activities: advising on patient rights and assistance in accessing health services, education and information

Contact

Address: Zrinsko Frankopanska 2b, 21000 Split

Telephone: +385915027861

Email: info@pravapacijenata.hr

Web: https://pravapacijenata.hr/

<span id="primorje-gorski-kotar-county"></span>
== Primorje-Gorski Kotar County ==

'''Hope Association Rijeka'''

Offer: Psychological support, education, workshops.

Contact:

Address: Milana Smokvine Tvrdog 5/1, 51 000 Rijeka

Telephone: 051 371 062, 097 613 9715

Email: klub.nada.rijeka@gmail.com

Web: https://klub-nada-rijeka.hr/

<span id="osijek-baranja-county"></span>
== Osijek-Baranja County ==

'''Mammae Osijek Association'''

Offer: Psychological support, information, support groups.

Contact:

Address: J. Leovića 4 (“Drava” Health Center), 31000 Osijek

Telephone: 031 373366, 091/480-1102

Email: klubmammaeos@gmail.com

Web: https://mammae-klub-osijek.hr/

<span id="istria-county"></span>
== Istria County ==

'''League Against Cancer Pula, Stoma Club Pula'''

Offer: Education, support for patients, information.

Contact:

Address: Nobileova 1, 52100 Pula

Telephone: 052 222 795

Email: liga.protiv.raka@pu.t-com.hr