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Survivorship Clinic — Consultation hours for long-term survivors

Posted by in Therapy

The Project

Fol­low-up care for women with gyneco­lo­gi­cal can­cer lasts five to ten years; after that, tho­se affec­ted are usual­ly con­side­red cured. Howe­ver, more than half of the­se women still suf­fer from long-term side effects, such as B. Fati­gue, incon­ti­nence and neu­ro­lo­gi­cal com­plaints that have a las­ting impact on your qua­li­ty of life. So far the­re is no cont­act point in Ger­ma­ny who sup­port affec­ted women in redu­cing the long-term side effects of their can­cer tre­at­ment and impro­ving their qua­li­ty of life.

In the Sur­vi­vor­ship pro­ject, a con­sul­ta­ti­on hour for women with gyneco­lo­gi­cal can­cer more than five years ago is to be estab­lished and eva­lua­ted at the Cli­nic for Gyneco­lo­gy with Cen­ter for Onco­lo­gi­cal Sur­gery of the Cha­ri­té. It should be exami­ned whe­ther such a con­sul­ta­ti­on impro­ves the qua­li­ty of life of the women con­cer­ned and is cost-effec­ti­ve. In addi­ti­on, it will be inves­ti­ga­ted whe­ther the long-term side effects of gyneco­lo­gi­cal can­cer can be bet­ter reco­gni­zed and treated.

For this pur­po­se, both pati­ents who take part in the con­sul­ta­ti­on and tho­se who do not take part are asked about their qua­li­ty of life and long-term side effects. Your phy­si­cal sta­te of health is recor­ded by medi­cal exami­na­ti­ons and data from the health insu­rance com­pa­nies are used to ana­ly­ze the fre­quen­cy of long-term side effects. In addi­ti­on, know­ledge should be gai­ned as to whe­ther cos­ts can be saved in the health care system.

The pro­ject is fun­ded for four years with a total of approx. 4 mil­li­on euros.

Information for Patients

Can I attend the SURVIVORSHIP CLINIC?

Long-term sur­vi­vors, regard­less of their cur­rent dise­a­se situa­ti­on, who were first dia­gno­sed with one of the fol­lo­wing gyneco­lo­gi­cal tumor dise­a­ses at least five years ago, can take part:

  • Ova­ri­an, fallo­pian tube and peri­to­ne­um cancer
  • Ute­ri­ne body cancer
  • cer­vical cancer
Where can I attend the SURVIVORSHIP CLINIC?

The stu­dy “Sur­vi­vor­ship Cli­nic — con­sul­ta­ti­on hours for long-term sur­vi­vors with gyneco­lo­gi­cal tumor dise­a­se” is taking place at the fol­lo­wing centers:

  • Cli­nic for Gyneco­lo­gy with Cen­ter for Onco­lo­gi­cal Sur­gery, Cha­ri­té Cam­pus Virch­ow-Kli­ni­kum (inter­ven­ti­on group)
  • Cli­nic for Gyneco­lo­gy at the Tech­ni­cal Uni­ver­si­ty of Dres­den (con­trol group)
  • Women’s Cli­nic of the Uni­ver­si­ty Medi­cal Cen­ter Ham­burg-Eppen­dorf (con­trol group)
  • Depart­ment of Women’s Health at the Uni­ver­si­ty of Tübin­gen (con­trol group)
What are the advantages of participating?

The Sur­vi­vor­ship Cli­nic is finan­ced by the Inno­va­ti­on Fund of the Fede­ral Joint Com­mit­tee. If this new form of care is eva­lua­ted posi­tively, the­re is a good chan­ce of offe­ring such a con­sul­ta­ti­on for long-term sur­vi­vors with gyneco­lo­gi­cal tumor dise­a­se as a health insu­rance bene­fit nati­on­wi­de. With your par­ti­ci­pa­ti­on you are making an important con­tri­bu­ti­on to incre­asing the exis­ting know­ledge about long-term sur­vi­val with gyneco­lo­gi­cal tumor dise­a­se as well as estab­li­shing a new form of care for long-term sur­vi­vors and clo­sing the pre­vious care gap.

Addi­tio­nal advan­ta­ges for the inter­ven­ti­on group (Ber­lin):

Tumor fol­low-up care, scree­ning for long-term side effects (e.g. fati­gue, chro­nic pain and men­tal health) and advice on life­style fac­tors (e.g. diet, exer­cise, sexua­li­ty) and advice on pre­ven­ti­on take place during the con­sul­ta­ti­on. An indi­vi­du­al trai­ning plan is crea­ted for each par­ti­ci­pant and each par­ti­ci­pant recei­ves their own acti­vi­ty tracker.

If the­re is a long-term side effect, our inter­di­sci­pli­na­ry team will co-tre­at you (e.g. in the fati­gue cen­ter, in neu­ro­lo­gy, con­sul­ta­ti­on hours for men­tal health, advice from our sexologist).

How does participation in SURVIVORSHIP CLINIC work?

During the first inter­view, which takes place as a face-to-face appoint­ment, you can expect the following:

  • Detail­ed dis­cus­sion about pre­vious ill­nesses, pre­vious tumor the­ra­py, social aspects, cur­rent sta­te of health
  • Han­ding over your per­so­nal access codes for the app / homepage
  • We will ask you to fill out ques­ti­on­n­aires on qua­li­ty of life and scree­ning for long-term side effects. Ide­al­ly, this is pos­si­ble via a per­so­nal log­in via the app / home­page from home or via tablet in our out­pa­ti­ent cli­nic. Alter­na­tively, we can send you the ques­ti­on­n­aires to your home.

The fol­lo­wing exami­na­ti­ons also take place in the inter­ven­ti­on group:

  • Tumor fol­low-up
  • Scree­ning for long-term side effects
  • Detail­ed con­sul­ta­ti­on with regard to pre­ven­ti­on and life­style aspects
  • Crea­te your per­so­nal sur­vi­vor­ship care plan

If you suspect a long-term side effect (e.g. fati­gue, poly­neu­ro­pa­thy, che­mo­brain, men­tal health, need for dis­cus­sion regar­ding sexua­li­ty), the­re is the pos­si­bi­li­ty of trea­ting the­se in our inter­di­sci­pli­na­ry team. This brings fur­ther appoint­ments with it.

The sports medi­ci­ne team will send you a trai­ning plan updated to suit your needs every month via the app / by email.

After three months we will ask you to fill out ques­ti­on­n­aires. Ide­al­ly, this is pos­si­ble via a per­so­nal log­in via the app / home­page from home or via tablet in our out­pa­ti­ent cli­nic. Alter­na­tively, we can send you the ques­ti­on­n­aires to your home.

After six months we will ask you to fill out ques­ti­on­n­aires. Ide­al­ly, this is pos­si­ble via a per­so­nal log­in via the app / home­page from home or via tablet in our out­pa­ti­ent cli­nic. Alter­na­tively, we can send you the ques­ti­on­n­aires to your home.

In the inter­ven­ti­on group, the fol­lo­wing exami­na­ti­ons also take place in a face-to-face appointment:

  • Detail­ed dis­cus­sion about the goals, eva­lua­ti­on of the tre­at­ment of long-term side effects, the cur­rent sta­te of health, advice on life­style and prevention
  • Cus­to­mi­ze your per­so­nal sur­vi­vor­ship care plan

If you suspect a long-term side effect (e.g. fati­gue, poly­neu­ro­pa­thy, che­mo­brain, men­tal health, need for dis­cus­sion regar­ding sexua­li­ty), the­re is the pos­si­bi­li­ty of trea­ting the­se in our inter­di­sci­pli­na­ry team. This brings fur­ther appoint­ments with it.

After nine months we will ask you to fill out ques­ti­on­n­aires. Ide­al­ly, this is pos­si­ble via a per­so­nal log­in via the app / home­page from home or via tablet in our out­pa­ti­ent cli­nic. Alter­na­tively, we can send you the ques­ti­on­n­aires to your home.

The final visit takes place after 12 months. Here all ques­ti­on­n­aires / exami­na­ti­ons are repea­ted from the first inter­view. This appoint­ment takes place as a face-to-face appoint­ment for the inter­ven­ti­on group.

How long does the study last?

The stu­dy lasts 12 months for each patient.

How much time is required by me?

Inter­ven­ti­on group:

A total of three atten­dance appoint­ments are plan­ned (stu­dy inclu­si­on after 6 months and final visit after 12 months). In addi­ti­on, ques­ti­on­n­aires are fil­led out after 3 and 9 months.

If you suspect a long-term side effect (e.g. fati­gue, poly­neu­ro­pa­thy, che­mo­brain, men­tal health, need for dis­cus­sion regar­ding sexua­li­ty), the­re is the pos­si­bi­li­ty of trea­ting the­se in our inter­di­sci­pli­na­ry team. This brings fur­ther appoint­ments with it.

Con­trol group:

The first inter­view takes place as a face-to-face appoint­ment. In addi­ti­on, you will be asked to fill out ques­ti­on­n­aires (online or on paper) after 3, 6, 9 and 12 months.

Do you need more information?

If you have any fur­ther ques­ti­ons, plea­se do not hesi­ta­te to cont­act us. Cont­act and appointment:

survivorship-clinic@charite.de
pho­ne: 030–450664087

How do I get access to the app?

If you are part of the Ber­lin / Bran­den­burg inter­ven­ti­on group, the Cha­ri­té Women’s Cli­nic (stu­dy cen­ter) will give you pseud­ony­mi­zed access to the sur­vi­vor­ship app. In addi­ti­on to a log­in, you will recei­ve an infor­ma­ti­on bro­chu­re so that you can navi­ga­te bet­ter through the app.

Information for medical personnel

What is the project about?

Fol­low-up care for pati­ents with gyneco­lo­gi­cal can­cer usual­ly extends to the first five years after the initi­al dia­gno­sis. Howe­ver, over half of long-term sur­vi­vors still have sym­ptoms. So far the­re is no cont­act point or con­sul­ta­ti­on hour for long-term sur­vi­vors with gyneco­lo­gi­cal tumor dise­a­se in Ger­ma­ny. We would now like to chan­ge this and would like to cli­ni­cal­ly and sci­en­ti­fi­cal­ly eva­lua­te such a con­sul­ta­ti­on as a new form of care. The Sur­vi­vor­ship Cli­nic stu­dy is finan­ced by the Inno­va­ti­on Fund of the Fede­ral Joint Com­mit­tee of Health Insu­rance Funds, so that if the eva­lua­ti­on is posi­ti­ve, it is pos­si­ble to offer such a sur­vi­vor­ship cli­nic as a health insu­rance service.

How do I refer patients in Berlin / Brandenburg?

We would like to work with you and would be hap­py if you refer your pati­ents to us for our con­sul­ta­ti­on hours. Your pati­ents can also bene­fit from our inter­di­sci­pli­na­ry sur­vi­vor­ship cli­nic. In the event of long-term side effects, we will refer your pati­ents direct­ly to our spe­cia­li­zed part­ners with a time­ly appoint­ment, e.g. in the case of fati­gue to our fati­gue cen­ter. You will recei­ve a sum­ma­ry of all cli­ni­cal fin­dings after each atten­dance appoint­ment. You will of cour­se con­ti­nue to car­ry out the pre­ven­ti­ve medi­cal check-ups.

If you would like to refer a pati­ent, plea­se cont­act us

Via pho­ne: 030/450664087 or via mail: survivorship-clinic@charite.de

Thanks very much!

How do I refer patients in Dresden, Hamburg and Tübingen?

We would like to work with you and would be hap­py if you talk to your pati­ents about our study.

If you would like to refer a pati­ent, plea­se cont­act us

Via pho­ne: 030/450664087 or via mail: survivorship-clinic@charite.de

Thanks very much!

Would you like to introduce a patient to us or do you need more information?

We look for­ward to per­so­nal cont­act, eit­her by email or by phone.

pho­ne: 030/450664087

mail: survivorship-clinic@charite.de

Flyer for the SURVIVORSHIP CLINIC project

Flyer_Survivorship_07_finalDown­load

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