Patient-centered care
Patient-centered Care Form
D.1 Patient-centered Care Form
The goal of the Dermatological Lymphoma Clinic is to manage patients and provide a treatment plan by the specialized multidisciplinary team to patients with incurable diseases such as advanced skin lymphomas where existing treatments do not change survival (Figure 1). The results with the existing treatments are very short-term.
Figure 1. Kaplan Mayer survival of patients with MF / SS analogous to clinical staging (A) and skin disease staging only (B)[Agar et al. Survival outcomes and prognostic factors in mycosis fungoides/Sézary syndrome: validation of the revised International Society for Cutaneous Lymphomas/European Organisation for Research and Treatment of Cancer staging proposal. J Clin Oncol 2010;28(31):4730-4739]
The main goal of the center is the patient-centered care with axes:
- informing the patient and his / her relatives about the treatment options
- the choice of appropriate treatment with the least possible toxicity
- the immunosuppressive agent (as these patients are already immunosuppressed)
- the possibility of participating in international clinical trials with drugs that are not marketed in Greece but only abroad
- the timely planning of those who can proceed to allogeneic transplantation which is the only therapeutic option for the healing of the patient.
SPECIAL FORM WITH INFORMATION MATERIAL OF THE PATIENT FOR THE DISEASE
Ε1. SPECIAL FORM WITH INFORMATION MATERIAL OF THE PATIENT FOR THE DISEASE
For the acquisition of an active role by the patient or the examinee (in an outpatient clinic or laboratory), simple and comprehensible forms are provided with information about the disease and its management or laboratory examination, its various aspects, risks, the following treatment regimens. with reference to the advantages and disadvantages, clinical / laboratory results, any alternative treatment and more. The above information may be posted on the website of the Agency, to which the candidate center (clinical department or laboratory) belongs. Relevant material is also available in English.
Cutaneous lymphomas are divided into T-cell (cutaneous T-cell lymphomas, CTCL) and B-cell lymphomas (CBCL). CTCLs make up 65% of cutaneous lymphomas, CBCLs 25%, and 10% contain rare subtypes of the disease, according to a large study by Whittaker et al.
T-cell cutaneous lymphoma is the most common type of cutaneous lymphoma, usually presenting as red, scaly lesions or thick skin plaques that often look like eczema or chronic dermatitis. The progression from limited skin involvement is variable and may be accompanied by tumor formation, ulceration, and exfoliation, which are accompanied by itching and are complicated by infections. The advanced stages of cutaneous lymphoma are defined by the involvement of lymph nodes, abnormal cells in the peripheral blood and infection of the internal organs. Most cutaneous lymphomas usually fall into the category of chronic lymphomas – which are treatable and usually not life-threatening.
B-cell cutaneous lymphomas are a less common version of cutaneous lymphomas. They make up about 20-25% of all cutaneous lymphomas. Non-Hodgkin B-cell lymphomas are derived from skin B-cells. Systemic or nodular B-cell lymphomas can be secondary to the skin and when a skin biopsy shows B-cell lymphoma it is very important to confirm that the skin is the only organ involved and that it is not systemic lymphoma. The most common forms of B-cell cutaneous lymphoma are slow-growing and respond well to mild treatments.
The treatment of cutaneous lymphoma is mainly based on the type of lymphoma, as well as its location and stage – the extent to which it has spread throughout the body. But other factors, such as the patient’s general health, can also influence treatment choices. Talk to your doctor if you have any questions about the treatment plan he or she recommends. The doctor also investigates some other conditions of the participants that may affect the primary outcome (eg gender, age, biomarkers). Thus, in primary skin lymphomas, the treatment is done by dermatologists with topical preparations, phototherapy and systematic treatments. In advanced stages of the disease, treatment is co-decided by the members of the multidisciplinary team (dermatologists, hematologists, radiotherapists) and decide
- when localized or whole-body electron irradiation is appropriate in the radiology unit; and
- when the chemotherapy performed in the hematology unit is suitable.
When the treatment cycles are completed, the maintenance of the therapeutic result is co-decided in the specialized dermatological lymphoma clinic where the patient continues to be monitored. In case the patient does not respond to the treatment, a change of treatment regimen or inclusion in a clinical study is co-decided and the appropriate examinations for future allogeneic transplantation are scheduled.
Ε3. INFORMATION FOR PATIENT General Information The P.G.N. ATTIΚΟΝ is one of the main pillars of tertiary care not only for the region of West Attica but also for the whole of Greece. For the Administration, the Scientific and the other staff, the fulfillment of the expectations of the citizens is a daily commitment. The Center for Excellence on Rare Hematological Diseases of Children and Adults – Cutaneous Lymphoma Unit (CoE-CL unit) welcomes you to a care environment in which patients and their relatives experience a unique experience in health services. PGN ATTIKON is the only hospital in Greece according to the standards of England, Germany and America, where there is a specialized skin lymphoma center. Priorities The CoE-CL unit has as a priority the safety of the patients. To achieve maximum security it has the following safety standards which it adheres to: Patient Identification, Informed Patient Consent and Instructions for preparation for laboratory tests. It also implements measures to reduce or prevent adverse events and errors as defined by the WHO and KEELPNO: Prevention of nosocomial infections, Report of adverse drug reactions and Sampling, storage and transport conditions.
Ε3. INFORMATION FOR PATIENT
- General Information
The P.G.N. ATTIΚΟΝ is one of the main pillars of tertiary care not only for the region of West Attica but also for the whole of Greece. For the Administration, the Scientific and the other staff, the fulfillment of the expectations of the citizens is a daily commitment.
The Center for Excellence on Rare Hematological Diseases of Children and Adults – Cutaneous Lymphoma Unit (CoE-CL unit) welcomes you to a care environment in which patients and their relatives experience a unique experience in health services. PGN ATTIKON is the only hospital in Greece according to the standards of England, Germany and America, where there is a specialized skin lymphoma center.
- Priorities
The CoE-CL unit has as a priority the safety of the patients. To achieve maximum security it has the following safety standards which it adheres to:
- Patient Identification, Informed Patient Consent and
- Instructions for preparation for laboratory tests.
It also implements measures to reduce or prevent adverse events and errors as defined by the WHO and KEELPNO:
- Prevention of nosocomial infections,
- Report of adverse drug reactions and
- Sampling, storage and transport conditions.
