rezultati istraŽivanja-demografski učešće u anketi uzelo 1606 pojedinaca iz 17 zemalja širom...

ANALYSIS

II. REZULTATI ISTRAŽIVANJA-DEMOGRAFSKI

• Učešće u anketi uzelo 1606 pojedinaca iz 17 zemalja širom sveta • Najviše pojedinaca je bilo iz SAD-a (32%), Japana (11%), Francuske (8%), Australije (6%), Brazila

(6%), i Ujedinjenog Kraljevstva (6%). • 78% anketiranih su bili pacijenti lečeni od limfoma. • Od toga, 43% su žene a 35% muškarci.

• Najviše anketiranih je u dobi 46-65 (51%), zatim 65+ (23%), 30-45 (19%)…

• Najviše anketiranih je bolovalo ili boluje od :o Folikularnog limfoma 22%o T-ćelijskog 20%o Hodgkin-ovog 15%o DLBCL 11%

• Hodgkin limfom se u najvećem broju javlja kod mlađe populacije, u uzrastu 18-29 (66%), kod dece 10-17 (37%), a ređe kod starijih u dobi 65+ samo 4% obolelih imalo je ovaj tip limfoma.

ANALYSIS

REZULTATI ISTRAŽIVANJA-NIVO SVESTI JAVNOSTI O LIMFOMU

•Svest javnosti o limfomu u Srbiji, ali i u svetu je na jako niskom nivou.

•U prilog tome govori činjenica da je od 1606 anketiranih pacijenata, samo 18% njih znalo po nešto o limfomu pre uspostavljanja dijagnoze.

•5 najčešćih simptoma koje su imali anketirani su: umor (19%), uvećani bezbolni limfni čvorovi (18%), obilno noćno znojenje (14%), gubitak težine (9%) i konstantni svrab (9%).

•Uprkos tome, što su imali izražene simptome dugo vremena, 50% njih se javilo lekaru iz nekog drugog razloga, 44% se javilo žaleći se baš na te simptome.

•57% pacijenata se javilo lekaru u roku od 6 meseci od pojave prvih simptoma, 26% između 6 meseci i 2 godine, a 11% tek posle 2 godine.

•Samo kod 15% pacijenata je lekar odmah posumnjao na limfom, čak 47% je na pravu dijagnozu čekalo preko 4 meseca.

ANALYSIS

• 48% pacijenata je dobilo pogrešnu dijagnozu prilikom prvog javljanja koja je bila pokrivena i terapijom, najčešće je to bila dijagnoza grip, alergija, kožno oboljenje…

• Najviše grešaka u dijagnozi pravi se kod najmlađih pacijenata (10-17), samo 6% pacijenata dobilo je prvu dijagnozu tačnu, kod najstarijih (65+) se pravi najmanje grešaka u dijagnozi, 25% njih je iz prvog puta dobilo tačnu dijagnozu.

•Najviše informacija o limfomu, lečenju i simptomima pacijenti dobijaju istražujući sami putem interneta (86%), zatim od udruženja pacijenata (10%), lekara (4%).

•Nakon uspostavljanja dijagnoze i odgovarajuće terapije najčešći fizički problemi kod pacijenata su umor(37%), gubitak kose (24%), mišićna slabost (23%), nesanica (11%)…

•Najčešći psihički i emocionalni problemi su finansijski (24%), zabrinutost zbog telesnih promena(14%), prblemi na poslu i u školi(14%)…

• Samo 38% pacijenata je zatražilo savet svog lekara zbog fizičkih i psihičkih problema, od toga 35% je dobilo neki savet lekara, a čak 65% nije dobilo nikakav savet.

ANALYSIS

REZULTATI ISTRAŽIVANJA

DRUGI VIDOVI PODRŠKE U CENTRU LEČENJA

•50 odsto pacijenata je dobilo informacije o njihovom tretmanu i terapiji od maedicinskih radnika u cenru gde su se lečili, a zatim slede

o Prijatelji i članovi porodice (22%);o Udruženja pacijenata (15%); io Onlajn istraživanje (13%).

•Oko 60 % ispitanika je reklo da im je zdravstveni cenar ponudio neki vid pomoći van terapija, a najviše im je pomogao psiholog (17%), socijalni radnik (13%), nutricionista-dijetetičar (12%), znatno manje njih je dobilo pomoć fizijatra preko fizikalne terapije (4%) ili pomoć sveštenika (< 1%). 19% ispitanika je navelo da nije dobilo predlog ordinirajućeg lekara za bilo koju od ove vrste pomoći.

ANALYSIS

REZULTATI ISSTRAŽIVANJA

RAD UDRUŽENJA PACIJENATA

•45% ispitanika je izjavilo da im je Udruženje pacijenata pružilo veliku podršku i pomoć, ali je čak 43% izjavilo da im ta podrška nije bila ni od kakve koristi.

•Po mišljenju anketiranih Udruženja pacijenat mogu da poboljšaju svoj rad i podršku koju pružaju pavcijentima ako obezbede:

o Što više informacija o njihovom tipu i podtipu limfoma, kliničkim istraživanjima i odgovore bna pitanja postavljena medicinskim radnicima (39%).

o Onlajn podrška, kao prezentacije, poboljšani web sajt, web konferencije… (19%); o Lična podrška kao poseta pacijentu kući, u bolnici…(18%);o Telefonska linija za podršku obolelima dostupna 24 časa(8%); i o Finansijska podrška (7%).

ANALYSIS


KUĆNO I BOLNIČKO LEČENJE

•2012. godine 71% pacijenata je terapiju primalo u bolničkim uslovima i to:o Intravenozno (43%)o Intravenozno & oralno (17%)o Zračenje (8%), o Potkožno (2%) and o Transplantacija matičnim ćelijama (1%).

•Dok je 26% terapiju sprovodilo u kućnim uslovima i to:o Watch & Wait (13%), o Oralna terapija (4%).

ANALYSIS


KUĆNO I BOLNIČKO LEČENJE-NASTAVAK

Pacijentima koji su lečeni u bolničkim uslovima na lošiji kvalitet života najviše je uticao:

o Gubitak kose (+30%);o Promena u mirisu i ukusu (+23%);o Mišićna slabost (+22%);o Povraćanje i mučnina (+18%);o Stomačni problemi (+18%);o Mukozitis i pojava ranica u ustima (+16%);o Umor (+15%);o Problemi sa koncentracijom (+14%);o Problemi sa stalnim infekcijama (+13%);o Gubitak apetita (+12%);o Promene u seksualnoj funkciji (+10%);o Sterilitet (+10%);o Gubitak težine (+9%);

Pacijenti koji su se lečili u kućnim uslovima imali su vrlo malo ili uopšte nisu imali ove probleme, ali su ti pacijenti imali izraženije kožne probleme (10%).

ANALYSIS

III. ZAKLJUČAK

Čini se, da iako je svest o limfomima veća, naročito u SAD-u, Francuskoj, Velikoj Britaniji i Japanu, greške u dijagnozi ostaju iste u čitavom svetu. Od izuzetne je važnosti edukovati lekare opšte medicine i onkologe kako da na vreme prepoznaju limfom.

Drugo, mora se raditi na osnaživanju saradnje između Udruženja pacijenata i zdravstvene zajednice.

Na sledećim slajdovima videćete detaljno obrađene rezultate ankete koju je sproveo Perception Insight, agencija koja ima 20.-godišnje iskustvo u ovom poslu.

This report was produced in conjunction with Perception Insight, a firm with over 20 years experience in large scale global market research, survey production and analysis.

Yes 78% (43%/35%)

No 22% (15%/8%)

MaleFemale

DEMOGRAPHICS: Who Responded

Are you CURRENTLY a lymphoma patient?

Q1: Are you CURRENTLY a lymphoma patient?Base : Global 2012 (1606)

Yes 78% (2%,7%,19%,8%,17%)

No 22% (0%,3%,3%,7%,3%)

FollicularDLBCLCLL/SLL Hodgkin T-Cell Other




78% 84%

22% 16%

2012 2010

Yes

No




Afghanistan 2 .1% Costa Rica 1 .1% Panama 1 .1%

Argentina 1 .1% Finland 1 .1% Poland 1 .1%

Armenia 1 .1% France 122 8% Poland 1 .1%

Australia 103 6% Germany 40 2% Portugal 1 .1%

Austria 5 .3% Greece 1 .1% Serbia 42 3%

Azerbaijan 1 .1% Guatemala 1 .1% Slovenia 16 1%

Bangladesh 1 .1% Hungary 1 .1% Somalia 1 .1%

Belgium 20 1% India 9 1% Spain 6 .4%

Iran 1 .1% Sweden 1 .1%

Ireland {Republic} 3 .2% Switzerland 67 4%

Brazil 100 6% Italy 77 5% Taiwan 1 .1%

Bulgaria 20 1% Japan 173 11% Turkey 4 .2%

Burundi 1 .1% Kiribati 1 .1% United Kingdom 102 6%

Cameroon 1 .1% Lebanon 1 .1% United States 514 32%

Canada 42 3% Malaysia 1 .1% Uzbekistan 1 .1%

China 3 .2% Mexico 2 .1% Vanuatu 1 .1%

Colombia 42 3% Netherlands 8 .5% Vatican City 1 .1%

New Zealand 56 3%

Bosnia Herzegovina

1 .1%

Response by Country

DEMOGRAPHICS: Total Respondents

Q2: What country are you currently living in?Base : Global 2012 (1606)

300819363

58%42%1%7%

19%51%23%

FemaleMale

10-1718-2930-4546-65

65+

92767919

105

Response Rates

Total

No. of Respondents

1606

Portion of Responses

100%

DEMOGRAPHICS: Age of Respondents

Q3: What is your age?Base : Global 2012 (1606)

10-17 1% (0%,0%,0%,0%,0%)

18-29 7% (0%,1%,0%,4%,0%)

30-45 19% (0%,3%,4%,6%,2%)

46-65 51% (1%,6%,15%,4%,10%)

65+ 23% (1%,1%,3%,1%,7%)


DEMOGRAPHICS: Age of Respondents

What is your age?

Q3: What is your age?Base : Global 2012 (1606)

Newly diagnosed 11% (0%,2%,2%,1%,2%)

Diagnosed & yet to be treated 11% (1%,1%,2%,1%,1%)

In remission > 6 months 24% (0%,3%,5%,4%,3%)

In remission > 2 years 24% (0%,3%,6%,4%,4%)

Treatment free > 5 years 13% (0%,1%,3%,3%,2%)

Have relapsed 7% (0%,0%,2%,0%,2%)

Relapsed and in treatment 12% (0%,1%,2%,1%,5%)


DEMOGRAPHICS: Stage of Patient Journey

What stage are you at in your patient journey?

Q5: What stage are you at in your patient journey?Base : Global 2012 (1606)

11% 14%

11% 0%

24% 53%

24% 0%

13% 18%

7% 15%

12% 0%

0% 1%

2012 2010

Newly diagnosed

Diagnosed & yet to be treated

In remission > 6 months

In remission > 2 years

Have relapsed

Treatment free > 5 years

Don't know

Relapsed and in treatment

DEMOGRAPHICS: Stage of Patient Journey

What stage are you at in your patient journey?

Q5: What stage are you at in your patient journey?Base : Global 2012 (1606)

Burkitts 2% (0%,0%,1%,1%,0%)

CLL/SLL 3% (0%,0%,0%,1%,1%)

DLBCL 11% (0%,1%,3%,6%,1%)

Follicular 22% (0%,0%,4%,15%,3%)

Hodgkin 15% (0%,4%,6%,4%,1%)

MALT/Marginal Zone 3% (0%,0%,0%,2%,1%)

Mantle Cell 2% (0%,0%,0%,1%,0%)

T-Cell 20% (0%,0%,2%,10%,7%)

Transformed 1% (0%,0%,0%,0%,0%)

Waldenstrom's 9% (0%,0%,0%,4%,4%)

Other Indolent NHL 5% (0%,0%,1%,2%,1%)

Other Aggressive NHL 5% (0%,0%,1%,3%,1%)

Don’t Know 3% (0%,0%,1%,1%,1%)

18-2910-17 30-45 46-65 65+

DEMOGRAPHICS: Lymphoma Subtype

What type of lymphoma do you have?

Q6: What type of lymphoma do you have?Base : Global 2012 (1606)

2% 1%

3% 5%

11% 10%

22% 34%

15% 13%

3% 4%

2% 10%

2012 2010

Burkitts

CLL/SLL

DLBCL

Follicular

MALT/Marginal Zone

Hodgkin

Mantle Cell




20% 4%

1% 2%

9% 2%

5% 7%

5% 6%

3% 3%

Other Aggressive NHL

2012 2010

Waldenstrom's

Transformed

T-Cell

Other Indolent NHL

Don’t Know




Needle biopsy 29% (0%,4%,6%,4%,10%)

Nodal removal 35% (0%,3%,11%,9%,3%)

Bone Marrow biopsy 19% (1%,2%,2%,1%,1%)

Blood tests 11% (1%,1%,2%,1%,2%)

Not sure 7% (0%,1%,1%,0%,3%)


DEMOGRAPHICS: Initial Diagnostic Tool

What test did you take to determine your INITIAL diagnosis?

Q7: What test did you take to determine your INITIAL diagnosis?Base : Global 2012 (1606)

Yes 51% (1%,3%,7%,3%,3%)

No 49% (2%,7%,5%,4%,2%)


DEMOGRAPHICS: More Than 1 Bone Marrow Biopsy

Did you have more than one bone marrow biopsy?

Q8: Did you have more than one bone marrow biopsy?Base : Global 2012 (296)

Radiation 8% (0%,1%,2%,1%,4%)

Intravenous therapy 43% (1%,7%,10%,11%,2%)

Oral medication therapy 4% (0%,0%,1%,0%,2%)

Watch and Wait 13% (2%,0%,4%,0%,1%)

Topical medication 9% (0%,0%,0%,0%,8%)

Stem cell transplant 1% (0%,0%,0%,0%,0%)

Intravenous & oral therapy 17% (0%,3%,5%,3%,1%)

Subcutaneous therapy 2% (0%,0%,0%,0%,1%)

Don't know 3% (0%,0%,0%,0%,1%)


DEMOGRAPHICS: Initial Treatment

WHAT was the INITIAL Treatment?

Q9: WHAT was the INITIAL Treatment?Base : Global 2012 (1583)

8% 6%

43% 67%

4% 4%

13% 15%

9% 1%

1% 6%

17% 0%

2012 2010

Radiation

Intravenous therapy

Oral medication therapy

Watch and Wait

Stem cell transplant

Topical medication

Intravenous & oral therapy




2% 0%

3% 1%

2012 2010

Don't know

Subcutaneous therapy




In-depth 6% (0%,1%,1%,2%,1%)

Cancer of lymphatic system 27% (1%,2%,6%,3%,6%)

A type of cancer 26% (1%,2%,5%,3%,7%)

Only heard the word 20% (1%,2%,5%,3%,3%)

Never even heard the word 21% (0%,4%,5%,5%,1%)


PRE-DIAGNOSIS : Understanding of Lymphoma

How much you understood about lymphoma, if anything, prior to your diagnosis:

Q10: How much you understood about lymphoma, if anything, prior to your diagnosis:Base : Global 2012 (1569)

6% 2%

27% 9%

26% 3%

20% 18%

21% 68%

2012 2010

In-depth

Cancer of lymphatic system

A type of cancer

Only heard the word

Never even heard the word




2012 32% (5%,36%,40%,16%,3%)

2010 55% (2%,11%,3%,18%,66%)

11% (4%,9%,17%,29%,41%)

6% (1%,5%,6%,22%,65%)

8% (8%,23%,15%,13%,41%)

5% (1%,7%,1%,8%,82%)

7% (4%,30%,33%,24%,9%)

1% (6%,6%,0%,0%,88%)

7% (7%,19%,28%,25%,22%)

4% (2%,11%,3%,11%,73%)

6% (3%,19%,19%,25%,33%)

5% (3%,33%,20%,24%,20%)

4% (8%,30%,16%,16%,31%)

3% (0%,5%,0%,19%,76%)

4% (5%,27%,27%,23%,18%)

4% (2%,2%,9%,19%,69%)

Cancer Heard Word Not heard word

United States

In-depth Lymphatic Cancer

Switzerland

New Zealand

Japan

France

Australia

United Kingdom

Brazil

Italy




2012 3% (5%,14%,12%,14%,55%)

2010 1% (0%,0%,0%,0%,100%)

3% (17%,5%,17%,17%,44%)

3% (12%,37%,24%,15%,12%)

15% (2%,5%,2%,22%,69%)

3% (18%,33%,10%,13%,28%)

1% (8%,8%,0%,0%,85%)

1% (0%,22%,11%,33%,33%)

1% (0%,10%,0%,20%,70%)

1% (0%,40%,20%,25%,15%)

1% (6%,19%,19%,38%,19%)

0% (0%,14%,29%,0%,57%)

Cancer Heard Word Not heard word

Bulgaria

Belgium

In-depth Lymphatic Cancer

Slovenia

India

Colombia

Serbia

Canada

Germany




Painless swollen gland/lump 18% (0%,2%,6%,4%,1%)

Night sweats 14% (0%,1%,3%,3%,2%)

Unexplained fever 5% (0%,1%,1%,2%,0%)

Weight loss 9% (0%,1%,2%,2%,1%)

Fatigue 19% (0%,2%,4%,4%,2%)

Persistent cough 5% (0%,1%,1%,2%,0%)

Breathlessness 6% (0%,1%,1%,2%,0%)

Persistent itching 9% (0%,0%,1%,2%,4%)

Headaches,Dizziness,Bleeding 4% (0%,0%,0%,1%,0%)

Other 12% (0%,1%,2%,1%,3%)


BEING DIAGNOSED: Initial Symptoms

Looking back, did you have any of the following symptoms?

Q11: Looking back, did you have any of the following symptoms?Base : Global 2012 (3897)

18% 20%

14% 16%

5% 6%

9% 9%

19% 19%

5% 5%

6% 7%

2012 2010

Painless swollen gland/lump

Night sweats

Unexplained fever

Weight loss

Persistent cough

Fatigue

Breathlessness




9% 7%

4% 0%

12% 13%

2012 2010

Other

Headaches,Dizziness,Bleeding

Persistent itching




Went for my yearly physical 17% (1%,1%,4%,1%,3%)

Was just not feeling well 32% (1%,5%,5%,5%,4%)

Had signs & symptoms 44% (1%,4%,12%,9%,10%)

Don't know 7% (0%,0%,1%,1%,3%)


BEING DIAGNOSED: Initial Prompt for Physician Visit

What initially prompted you to go to the doctor?

Q12: What initially prompted you to go to the doctor?Base : Global 2012 (1591)

17% 15%

32% 29%

44% 55%

7% 0%

2012 2010

Went for my yearly physical

Was just not feeling well

Had signs & symptoms

Don't know

BEING DIAGNOSED: Initial Prompt for Physician Visit

What initially prompted you to go to the doctor?

Q12: What initially prompted you to go to the doctor?Base : Global 2012 (1591)

Less than 6 mos 57% (1%,9%,14%,10%,7%)

6-12 months 19% (0%,1%,4%,3%,4%)

1-2 years 7% (0%,0%,1%,1%,2%)

2-5 years 6% (0%,0%,2%,0%,2%)

More than 5 years 5% (0%,0%,0%,0%,3%)

Not sure 7% (1%,0%,1%,0%,1%)


BEING DIAGNOSED: Time To First Visit to Physician

Estimated time between first experiencing symptoms and first visit to a doctor?

Q13: Estimated time between first experiencing symptoms and first visit to a doctor?Base : Global 2012 (1518)

Cold Virus Infection 11% (3%,5%,2%,1%,0%)

Flu 2% (1%,1%,0%,0%,0%)

Asthma 2% (0%,1%,0%,0%,0%)

Glands/enlarged glands 9% (2%,5%,1%,1%,0%)

Glandular fever 2% (1%,1%,0%,0%,0%)

Cysts 3% (0%,1%,0%,0%,0%)

Cancer (various) 5% (1%,2%,1%,1%,0%)

Lymphoma 19% (4%,6%,4%,3%,1%)

Hernia 1% (0%,1%,0%,0%,0%)

Back pain 3% (1%,0%,0%,0%,0%)

Dermatitis/itchy skin/rash 12% (6%,2%,1%,1%,2%)

Stress 4% (1%,2%,1%,0%,0%)

No diagnosis 14% (4%,6%,3%,1%,1%)

Others 14% (4%,5%,3%,2%,1%)

Needle biopsy Nodal removal Bone Marrow Blood tests Not sure

BEING DIAGNOSED: Initial Diagnosis

What was the doctor’s diagnosis for the INITIAL symptoms?

Q14: What was the doctor’s diagnosis for the INITIAL symptoms?Base : Global 2012 (1947)

Cold Virus Infection 11% (7%,0%,1%,0%,1%,0%,1%)

Flu 2% (1%,0%,0%,0%,0%,0%,0%)

Asthma 2% (1%,0%,0%,0%,0%,0%,0%)

Glands/enlarged glands 9% (5%,0%,0%,0%,1%,1%,1%)

Glandular fever 2% (1%,0%,0%,0%,0%,0%,0%)

Cysts 3% (1%,0%,0%,0%,0%,0%,0%)

Cancer (various) 5% (1%,0%,1%,0%,1%,1%,1%)

General oncologistDermatologistGeneral practitioner

Lymphoma oncologist Surgeon Other SpecialityHaematologist




Lymphoma 19% (5%,2%,2%,1%,4%,1%,2%)

Hernia 1% (0%,0%,0%,0%,0%,0%,0%)

Back pain 3% (1%,0%,0%,0%,0%,0%,1%)

Dermatitis/itchy skin/rash 13% (4%,7%,0%,0%,1%,0%,1%)

Stress 5% (2%,0%,0%,0%,0%,0%,0%)

No diagnosis 14% (7%,1%,1%,1%,2%,1%,2%)

Others 14% (6%,1%,1%,0%,1%,1%,3%)

General oncologistDermatologistGeneral practitioner

Lymphoma oncologist Surgeon Other SpecialityHaematologist





Flu 2% (0%,1%,1%,1%,0%)

Asthma 2% (0%,0%,0%,1%,0%)



Cysts 3% (0%,0%,0%,1%,0%)

Cancer (various) 5% (0%,1%,1%,2%,1%)

Lymphoma 19% (0%,1%,2%,10%,5%)

Hernia 1% (0%,0%,0%,1%,0%)

Back pain 3% (0%,0%,1%,1%,0%)


Stress 4% (0%,1%,1%,2%,0%)

No diagnosis 14% (0%,1%,2%,8%,3%)

Others 14% (0%,1%,3%,7%,3%)

18-2910-17 30-45 46-65 65+





Flu 2% (0%,0%,0%,1%,0%)

Asthma 2% (0%,0%,1%,1%,0%)



Cysts 3% (0%,0%,1%,1%,0%)

Cancer (various) 5% (0%,0%,1%,1%,1%)

Lymphoma 19% (1%,2%,5%,3%,2%)

Hernia 1% (0%,0%,1%,0%,0%)

Back pain 3% (0%,1%,0%,1%,0%)


Stress 4% (0%,1%,1%,1%,0%)

No diagnosis 14% (0%,2%,4%,2%,1%)

Others 14% (0%,2%,3%,2%,2%)





Yes 41% (0%,5%,6%,7%,12%)

No 57% (2%,5%,16%,8%,6%)

Not sure 3% (0%,0%,0%,0%,0%)


BEING DIAGNOSED: Prescription for Initial Diagnosis

Were you given any medication for your initial diagnosis?

Q15: Were you given any medication for your initial diagnosis?Base : Global 2012 (1518)

Yes 41% (1%,3%,8%,20%,8%)

No 57% (1%,3%,9%,30%,14%)

Not sure 3% (0%,0%,1%,1%,0%)

18-2910-17 30-45 46-65 65+




41% 35%

57% 64%

3% 1%

2012 2010

Yes

No

Not sure




General practitioner 43% (1%,5%,11%,8%,5%)

Dermatologist 14% (0%,0%,1%,1%,11%)

General oncologist 7% (0%,1%,2%,1%,0%)

Lymphoma oncologist 5% (0%,0%,1%,1%,1%)

Haematologist 11% (1%,1%,3%,2%,0%)

Surgeon 7% (0%,1%,2%,1%,0%)

Other Speciality 13% (0%,2%,3%,2%,1%)

Don't know 1% (0%,0%,0%,0%,0%)


BEING DIAGNOSED: Type of Physician at Initial Diagnosis

What type of doctor were you in the care of at initial diagnosis?

Q16: What type of doctor were you in the care of at initial diagnosis?Base : Global 2012 (1866)

43% 71%

14% 0%

7% 15%

5% 10%

11% 0%

7% 0%

13% 0%

1% 4%

2012 2010

General practitioner

Dermatologist

General oncologist

Lymphoma oncologist

Surgeon

Haematologist

Don't know

Other Speciality

BEING DIAGNOSED: Type of Physician at Initial Diagnosis

What type of doctor were you in the care of at initial diagnosis?

Q16: What type of doctor were you in the care of at initial diagnosis?Base : Global 2012 (1866)

Yes 46% (1%,4%,10%,7%,9%)

No 52% (1%,6%,12%,8%,9%)

Not sure 3% (0%,0%,1%,1%,0%)


BEING DIAGNOSED: Desire or Suggestion for Second Opinion

Did you or did someone in your community ever want you to get a second opinion?

Q18: Did you or did someone in your community ever want you to get a second opinion?Base : Global 2012 (1518)

46% 50%

52% 49%

3% 1%

2012 2010

Yes

No

Not sure

BEING DIAGNOSED: Desire or Suggestion for Second Opinion

Did you or did someone in your community ever want you to get a second opinion?

Q18: Did you or did someone in your community ever want you to get a second opinion?Base : Global 2012 (1518)

Yes 49% (1%,4%,10%,6%,12%)

No 47% (1%,6%,12%,8%,7%)

Not sure 4% (0%,1%,0%,1%,0%)


BEING DIAGNOSED: Second Opinions Sought

Did you end up getting one?

Q19: Did you end up getting one?Base : Global 2012 (1518)

49% 52%

47% 48%

4% 1%

2012 2010

Yes

No

Not sure

BEING DIAGNOSED: Second Opinions Sought

Did you end up getting one?

Q19: Did you end up getting one?Base : Global 2012 (1518)

1-2 weeks 21% (1%,2%,4%,3%,3%)

3-4 weeks 26% (1%,3%,7%,4%,3%)

2-4 months 21% (1%,3%,5%,4%,3%)

5-10 months 15% (0%,1%,3%,4%,2%)

1-2 years 8% (0%,0%,2%,1%,3%)

3-4 years 3% (0%,0%,1%,0%,1%)

4+ years 6% (0%,0%,0%,0%,4%)

Don't know 1% (0%,0%,0%,0%,0%)


BEING DIAGNOSED: Timing of Accurate Diagnosis

Length of time to be ACCURATELY diagnosed? (first visit to lymphoma diagnosis)

Q20: Length of time to be ACCURATELY diagnosed? (first visit to lymphoma diagnosis)Base : Global 2012 (1518)

21% 32%

26% 26%

21% 21%

15% 10%

8% 9%

3% 2%

6% 1%

1% 0%

2012 2010

1-2 weeks

3-4 weeks

2-4 months

5-10 months

3-4 years

1-2 years

Don't know

4+ years

BEING DIAGNOSED: Timing of Accurate Diagnosis

Length of time to be ACCURATELY diagnosed? (first visit to lymphoma diagnosis)

Q20: Length of time to be ACCURATELY diagnosed? (first visit to lymphoma diagnosis)Base : Global 2012 (1518)

False

Yes 15% (0%,2%,4%,4%,2%)

No 79% (2%,9%,18%,11%,16%)

Not sure 6% (0%,1%,1%,1%,1%)


BEING DIAGNOSED: Suspicion of Lymphoma

Was lymphoma ever suspected prior to your official diagnosis?

Q21: Was lymphoma ever suspected prior to your official diagnosis?Base : Global 2012 (1518)

15% 15%

79% 85%

6% 1%

2012 2010

Yes

No

Not sure

BEING DIAGNOSED: Suspicion of Lymphoma

Was lymphoma ever suspected prior to your official diagnosis?

Q21: Was lymphoma ever suspected prior to your official diagnosis?Base : Global 2012 (1518)

Yes 63% (0%,8%,15%,16%,7%)

No 31% (2%,2%,7%,10%,3%)

Not sure 6% (0%,0%,1%,1%,1%)


BEING DIAGNOSED: Suspicion Discussed with Physician

Was this suspicion ever discussed with your doctor?

Q22: Was this suspicion ever discussed with your doctor?Base : Global 2012 (227)

63% 23%

31% 74%

6% 0%

0% 3%

2012 2010

Yes

No

Not sure

Don't know

BEING DIAGNOSED: Suspicion Discussed with Physician

Was this suspicion ever discussed with your doctor?

Q22: Was this suspicion ever discussed with your doctor?Base : Global 2012 (227)

Very satisfied 39% (1%,3%,7%,7%,8%)

Satisfied 27% (1%,3%,7%,4%,4%)

Moderately satisfied 19% (0%,3%,5%,3%,3%)

Not satisfied at all 11% (0%,1%,3%,1%,2%)

Very dissatisfied 5% (0%,1%,1%,1%,1%)


BEING DIAGNOSED: Medical Care Experience

How positive was your diagnosis experience in relation to the medical care?

Q23: How positive was your diagnosis experience in relation to the medical care?Base : Global 2012 (1504)

39% 31%

27% 19%

19% 19%

11% 12%

5% 19%

2012 2010

Very satisfied

Satisfied

Moderately satisfied

Not satisfied at all

Very dissatisfied

BEING DIAGNOSED: Medical Care Experience

How positive was your diagnosis experience in relation to the medical care?

Q23: How positive was your diagnosis experience in relation to the medical care?Base : Global 2012 (1504)

Yes 51% (1%,4%,11%,7%,12%)

No 49% (1%,7%,11%,9%,6%)


CLINICAL TRIALS: Knowledge at Diagnosis

At the time of diagnosis, did you know what a clinical trial was?

Q24: At the time of diagnosis, did you know what a clinical trial was?Base : Global 2012 (1497)

51% 94%

49% 6%

2012 2010

Yes

No

CLINICAL TRIALS: Knowledge at Diagnosis

At the time of diagnosis, did you know what a clinical trial was?

Q24: At the time of diagnosis, did you know what a clinical trial was?Base : Global 2012 (1497)

Yes 25% (1%,3%,6%,5%,4%)

No 69% (2%,7%,14%,9%,15%)

Not sure 6% (0%,1%,2%,2%,0%)


CLINICAL TRIALS: Offering as Treatment Option

Approached to participate in a clinical trial as an option to treatment?

Q25: Approached to participate in a clinical trial as an option to treatment?Base : Global 2012 (1497)

Yes 25% (2%,2%,5%,6%,4%,2%,4%)

No 69% (7%,8%,18%,16%,8%,4%,8%)

Not sure 6% (1%,1%,1%,2%,1%,0%,0%)

In remission > 2 years Relapsed and in treatmentHave relapsedTreatment free > 5 years

Newly diagnosed In remission > 6 monthsDiagnosed & yet to be treated




25% 30%

69% 69%

6% 1%

2012 2010

Yes

No

Not sure




Another patient 4% (0%,0%,1%,1%,0%)

Doctor 65% (1%,7%,15%,15%,11%)

Friend 4% (0%,0%,2%,1%,0%)

Nurse 7% (0%,1%,2%,1%,2%)

Patient organization 5% (0%,1%,2%,0%,0%)

Personal research 13% (0%,2%,6%,1%,1%)

Other 3% (0%,0%,2%,1%,0%)


CLINICAL TRIALS: Who Discussed Option With Patient

Who discussed this option of treatment with you?

Q26: Who discussed this option of treatment with you?Base : Global 2012 (487)

4% 1%

65% 79%

4% 3%

7% 4%

5% 4%

13% 10%

3% 0%

2012 2010

Another patient

Doctor

Friend

Nurse

Personal research

Patient organization

Other

CLINICAL TRIALS: Who Discussed Option With Patient

Who discussed this option of treatment with you?

Q26: Who discussed this option of treatment with you?Base : Global 2012 (487)

Yes 69% (1%,5%,17%,17%,10%)

No 32% (1%,6%,8%,3%,5%)


CLINICAL TRIALS: Agreed to Participate

Did you agree to participate?

Q27: Did you agree to participate?Base : Global 2012 (378)

Yes 69% (4%,5%,13%,17%,12%,7%,10%)

No 32% (3%,2%,6%,8%,4%,3%,6%)



CLINICAL TRIALS: Agreed to Participate

Did you agree to participate?

Q27: Did you agree to participate?Base : Global 2012 (378)

Yes 37% (1%,4%,8%,4%,7%)

No 9% (0%,1%,2%,1%,2%)

Need more information 55% (1%,5%,12%,8%,11%)


CLINICAL TRIALS: If Asked, Would Patient Participate

How likely is it that you would agree to participate in a clinical trial if asked?

Q28: How likely is it that you would agree to participate in a clinical trial if asked?Base : Global 2012 (1117)

37% 41%

9% 5%

55% 53%

2012 2010

Yes

No

Need more information

CLINICAL TRIALS: If Asked, Would Patient Participate

How likely is it that you would agree to participate in a clinical trial if asked?

Q28: How likely is it that you would agree to participate in a clinical trial if asked?Base : Global 2012 (1117)

Afraid 4% (0%,0%,1%,1%,0%)

Lack of understanding 9% (0%,2%,2%,2%,1%)

Wanted a successful treatment 24% (0%,4%,5%,4%,4%)

Not enough information 22% (0%,2%,5%,3%,4%)

Outside influence 1% (0%,0%,0%,0%,0%)

Was too involved for me 3% (0%,1%,0%,0%,1%)

Clinic was too far away 6% (0%,0%,1%,1%,2%)

Could not afford it 4% (0%,0%,1%,1%,1%)

Other 29% (1%,2%,6%,4%,7%)


CLINICAL TRIALS: Reasons for Not Participating

What were your reasons for not wanting to participate?

Q29: What were your reasons for not wanting to participate?Base : Global 2012 (1082)

4% 3%

9% 4%

24% 29%

22% 18%

1% 1%

3% 2%

6% 9%

2012 2010

Afraid

Lack of understanding

Wanted a successful treatment

Not enough information

Was too involved for me

Outside influence

Clinic was too far away




4% 4%

29% 28%

0% 1%

0% 0%

2012 2010

Depressed

Other

Could not afford it

I was feeling too sick




Financial 15% (9%/6%)

Access to treatment center 11% (6%/4%)

Language 1% (0%/0%)

Access to up to date treatment 10% (5%/5%)

Wait time to treatment too long 9% (5%/4%)

Personal support 10% (7%/3%)

Unable to give up care giver role 7% (5%/2%)

Other 38% (22%/16%)

MaleFemale

QUALITY OF LIFE: Barriers to Receiving Adequate Treatment

Have you experienced any serious barriers to receiving adequate treatment?

Q30: Have you experienced any serious barriers to receiving adequate treatment?Base : Global 2012 (1808)

Financial 16% (3%,13%)

Access to treatment center 11% (3%,9%)

Language 1% (0%,1%)

Access to up to date treatment 10% (2%,9%)

Wait time to treatment too long 9% (1%,8%)

Personal support 10% (2%,8%)

Unable to give up care giver role 7% (1%,6%)

Other 37% (5%,32%)

Hospital TreatmentHome Treatment




Financial 15% (0%,2%,4%,2%,3%)

Access to treatment center 11% (0%,1%,2%,1%,3%)

Language 1% (0%,0%,0%,0%,0%)

Access to up to date treatment 10% (0%,1%,2%,2%,2%)

Wait time to treatment too long 9% (0%,2%,2%,1%,1%)

Personal support 10% (0%,1%,3%,1%,2%)

Unable to give up care giver role 7% (0%,1%,2%,1%,1%)

Other 38% (1%,4%,9%,6%,6%)





Financial 15% (0%,1%,4%,9%,2%)

Access to treatment center 11% (0%,1%,2%,6%,2%)

Language 1% (0%,0%,0%,0%,0%)

Access to up to date treatment 10% (0%,1%,2%,5%,2%)

Wait time to treatment too long 9% (0%,1%,1%,5%,2%)

Personal support 10% (0%,0%,2%,5%,2%)

Unable to give up care giver role 7% (0%,0%,2%,4%,0%)

Other 38% (0%,3%,7%,19%,9%)

18-2910-17 30-45 46-65 65+




Impacted me a lot 52% (34%/18%)

Impacted me a little 34% (18%/16%)

Have not impacted me at all 15% (7%/8%)

MaleFemale

QUALITY OF LIFE: Impact on Sense of Well Being - Physical

Fatigue

Q31.01: FatigueBase : Global 2012 (1356)

Impacted me a lot 54% (6%,48%)

Impacted me a little 34% (6%,28%)

Have not impacted me at all 13% (3%,10%)



Fatigue


Impacted me a lot 52% (1%,6%,11%,10%,7%)

Impacted me a little 34% (1%,4%,8%,5%,7%)

Have not impacted me at all 15% (1%,1%,4%,1%,4%)



Fatigue


Impacted me a lot 52% (1%,5%,11%,26%,9%)



18-2910-17 30-45 46-65 65+


Fatigue





MaleFemale


Hair loss

Q31.02: Hair lossBase : Global 2012 (1303)






Hair loss


Impacted me a lot 35% (0%,6%,8%,9%,3%)





Hair loss


Impacted me a lot 35% (1%,4%,9%,17%,5%)



18-2910-17 30-45 46-65 65+


Hair loss





MaleFemale


Muscle weakness

Q31.03: Muscle weaknessBase : Global 2012 (1302)






Muscle weakness


Impacted me a lot 34% (1%,5%,7%,8%,3%)





Muscle weakness


Impacted me a lot 34% (1%,3%,8%,18%,4%)



18-2910-17 30-45 46-65 65+


Muscle weakness





MaleFemale


Trouble concentrating

Q31.04: Trouble concentratingBase : Global 2012 (1286)

Impacted me a lot 27% (0%,3%,7%,7%,3%)







Impacted me a lot 27% (0%,3%,6%,14%,3%)



18-2910-17 30-45 46-65 65+







MaleFemale


Sleeplessness

Q31.05: SleeplessnessBase : Global 2012 (1302)






Sleeplessness


Impacted me a lot 29% (0%,4%,6%,5%,5%)





Sleeplessness


Impacted me a lot 29% (0%,2%,6%,15%,5%)



18-2910-17 30-45 46-65 65+


Sleeplessness





MaleFemale


Changes in taste and smell

Q31.06: Changes in taste and smellBase : Global 2012 (1277)

Impacted me a lot 28% (0%,5%,6%,7%,3%)







Impacted me a lot 28% (0%,3%,7%,14%,4%)



18-2910-17 30-45 46-65 65+







MaleFemale


Bowel changes

Q31.07: Bowel changesBase : Global 2012 (1277)






Bowel changes


Impacted me a lot 26% (0%,4%,6%,6%,3%)





Bowel changes


Impacted me a lot 26% (1%,3%,6%,12%,5%)



18-2910-17 30-45 46-65 65+


Bowel changes





MaleFemale


Aching joints

Q31.08: Aching jointsBase : Global 2012 (1280)






Aching joints


Impacted me a lot 29% (0%,3%,6%,7%,3%)





Aching joints


Impacted me a lot 29% (0%,3%,7%,14%,4%)



18-2910-17 30-45 46-65 65+


Aching joints





MaleFemale


Nausea and vomiting

Q31.09: Nausea and vomitingBase : Global 2012 (1259)






Nausea and vomiting


Impacted me a lot 21% (0%,3%,4%,7%,1%)





Nausea and vomiting


Impacted me a lot 21% (0%,3%,7%,8%,2%)



18-2910-17 30-45 46-65 65+


Nausea and vomiting





MaleFemale


Problems fighting infections

Q31.1: Problems fighting infectionsBase : Global 2012 (1273)

Impacted me a lot 24% (0%,3%,5%,5%,2%)







Impacted me a lot 24% (1%,3%,6%,11%,4%)



18-2910-17 30-45 46-65 65+







MaleFemale


Memory loss

Q31.11: Memory lossBase : Global 2012 (1262)






Memory loss


Impacted me a lot 13% (0%,2%,3%,3%,2%)





Memory loss


Impacted me a lot 13% (0%,1%,4%,7%,2%)



18-2910-17 30-45 46-65 65+


Memory loss





MaleFemale


Skin reactions

Q31.12: Skin reactionsBase : Global 2012 (1269)






Skin reactions


Impacted me a lot 22% (0%,1%,3%,3%,9%)





Skin reactions


Impacted me a lot 22% (0%,1%,4%,11%,5%)



18-2910-17 30-45 46-65 65+


Skin reactions





MaleFemale


Mucositis/mouth ulcers

Q31.13: Mucositis/mouth ulcersBase : Global 2012 (1255)

Impacted me a lot 18% (0%,3%,4%,5%,1%)







Impacted me a lot 18% (1%,2%,5%,8%,2%)



18-2910-17 30-45 46-65 65+







MaleFemale


Loss of appetite

Q31.14: Loss of appetiteBase : Global 2012 (1167)






Loss of appetite


Impacted me a lot 17% (0%,3%,3%,4%,2%)





Loss of appetite


Impacted me a lot 17% (1%,2%,4%,9%,3%)



18-2910-17 30-45 46-65 65+


Loss of appetite





MaleFemale


Change in sexual function

Q31.15: Change in sexual functionBase : Global 2012 (1260)

Impacted me a lot 22% (0%,3%,5%,5%,3%)






Impacted me a lot 22% (0%,2%,6%,11%,3%)



18-2910-17 30-45 46-65 65+







MaleFemale


Weight loss

Q31.16: Weight lossBase : Global 2012 (1176)






Weight loss


Impacted me a lot 15% (0%,2%,3%,3%,2%)





Weight loss


Impacted me a lot 15% (0%,1%,3%,7%,3%)



18-2910-17 30-45 46-65 65+


Weight loss





MaleFemale


Fluid retention

Q31.17: Fluid retentionBase : Global 2012 (1240)






Fluid retention


Impacted me a lot 14% (0%,2%,2%,5%,2%)






Fluid retention

Impacted me a lot 14% (0%,2%,4%,5%,2%)



18-2910-17 30-45 46-65 65+


Fluid retention





MaleFemale


Weight gain

Q31.18: Weight gainBase : Global 2012 (1244)






Weight gain


Impacted me a lot 16% (0%,2%,3%,6%,2%)





Weight gain


Impacted me a lot 16% (0%,3%,5%,7%,2%)



18-2910-17 30-45 46-65 65+


Weight gain





MaleFemale


Loss of fertility

Q31.19: Loss of fertilityBase : Global 2012 (1187)






Loss of fertility


Impacted me a lot 11% (0%,2%,2%,4%,1%)





Loss of fertility


Impacted me a lot 11% (0%,2%,4%,4%,0%)



18-2910-17 30-45 46-65 65+


Loss of fertility





MaleFemale


Swelling of arms and legs

Q31.2: Swelling of arms and legsBase : Global 2012 (1250)

Impacted me a lot 11% (0%,2%,1%,2%,1%)







Impacted me a lot 11% (0%,1%,3%,4%,2%)



18-2910-17 30-45 46-65 65+




Changes in relationships with others 18% (12%/7%)

Stresses related to financial issues 13% (8%/5%)

Loss of self-esteem 11% (7%/4%)

Concerns about body image changes 15% (10%/5%)

Impact on my employment 10% (6%/4%)

Difficulty with job or school 9% (5%/4%)

Problems with insurance coverage 8% (5%/3%)

Not understanding my options 8% (5%/3%)

Difficulty using the health system 7% (5%/3%)

MaleFemale

QUALITY OF LIFE: Patient Experience Since Diagnosis

Since your diagnosis, which of the following, if any, have you experienced?

Q32: Since your diagnosis, which of the following, if any, have you experienced?Base : Global 2012 (3586)

Changes in relationships with others 19% (2%,17%)

Stresses related to financial issues 13% (2%,11%)

Loss of self-esteem 11% (2%,9%)

Concerns about body image changes 16% (3%,13%)

Impact on my employment 10% (1%,9%)

Difficulty with job or school 9% (1%,8%)

Problems with insurance coverage 8% (1%,7%)

Not understanding my options 8% (1%,7%)

Difficulty using the health system 7% (1%,6%)





Changes in relationships with others 18% (0%,2%,4%,4%,2%)

Stresses related to financial issues 13% (0%,1%,3%,2%,2%)

Loss of self-esteem 11% (0%,1%,2%,3%,2%)

Concerns about body image changes 15% (0%,2%,3%,3%,3%)

Impact on my employment 10% (0%,1%,3%,2%,2%)

Difficulty with job or school 9% (0%,1%,2%,2%,1%)

Problems with insurance coverage 8% (0%,1%,2%,2%,1%)

Not understanding my options 8% (0%,1%,2%,1%,2%)

Difficulty using the health system 7% (0%,1%,1%,1%,2%)





Changes in relationships with others 18% (0%,2%,4%,9%,3%)



Concerns about body image changes 15% (0%,2%,3%,8%,3%)

Impact on my employment 10% (0%,1%,2%,6%,1%)

Difficulty with job or school 9% (0%,1%,2%,5%,1%)

Problems with insurance coverage 8% (0%,1%,2%,4%,1%)


Difficulty using the health system 7% (0%,1%,1%,4%,2%)

18-2910-17 30-45 46-65 65+




Changes in relationships 21% (13%/9%)

Stresses related to financial issues 14% (8%/6%)

Loss of self-esteem 10% (6%/4%)

Concerns about body image 14% (10%/4%)

Loss of employment 11% (6%/5%)

Difficulty on the job/school 8% (4%/4%)

Problems getting insurance 6% (4%/3%)

Not understanding my options 9% (5%/5%)

Difficulty with the health system 6% (4%/2%)

MaleFemale

QUALITY OF LIFE: Highest Impact on Sense of Well Being

Which two had the most impact on your sense of well being?

Q33: Which two had the most impact on your sense of well being?Base : Global 2012 (2496)

Changes in relationships 21% (0%,3%,5%,4%,3%)



Concerns about body image 14% (0%,2%,3%,3%,3%)

Loss of employment 11% (0%,1%,3%,1%,1%)

Difficulty on the job/school 8% (0%,1%,2%,1%,1%)

Problems getting insurance 6% (0%,0%,1%,1%,1%)


Difficulty with the health system 6% (0%,0%,1%,1%,2%)





Changes in relationships 21% (2%,2%,5%,5%,3%,1%,2%)

Stresses related to financial issues 14% (1%,2%,3%,3%,2%,1%,2%)

Loss of self-esteem 10% (1%,1%,3%,2%,2%,0%,1%)

Concerns about body image 14% (2%,2%,4%,3%,1%,1%,2%)

Loss of employment 11% (1%,1%,3%,2%,1%,1%,2%)

Difficulty on the job/school 8% (1%,1%,2%,2%,1%,1%,0%)

Problems getting insurance 6% (0%,1%,1%,2%,1%,0%,1%)

Not understanding my options 9% (1%,1%,2%,2%,1%,1%,1%)

Difficulty with the health system 6% (1%,1%,2%,1%,0%,1%,1%)






Yes 39% (1%,3%,8%,8%,8%)

No 53% (1%,6%,13%,7%,9%)

Not sure 8% (0%,1%,1%,1%,2%)


QUALITY OF LIFE: Discussion of Well Being with Physician

Have you communicated any of this with your doctor?

Q34: Have you communicated any of this with your doctor?Base : Global 2012 (1387)

Yes 58% (1%,5%,11%,12%,13%)

No 30% (1%,3%,7%,6%,5%)

Not sure 12% (0%,1%,3%,2%,2%)


QUALITY OF LIFE: Helpfulness of Physician

Was the doctor able to help you?

Q35: Was the doctor able to help you?Base : Global 2012 (535)

Yes 53% (1%,7%,11%,10%,7%)

No 47% (1%,4%,11%,6%,10%)


QUALITY OF LIFE: Support Beyond Physician

Q36: Did you seek support beyond your doctor?Base : Global 2012 (1384)

Did you seek support beyond your doctor?

Social worker 13% (1%,12%)

Referral to external support provider 16% (2%,14%)

Dietician/nutritionist 13% (1%,12%)

Counsellor/psychologist 18% (1%,16%)

Chaplain 4% (0%,3%)

Physical therapy 6% (0%,5%)

Pain management 5% (0%,5%)

Complementary therapist 4% (0%,4%)

None 17% (4%,13%)

Other 6% (1%,5%)


QUALITY OF LIFE: Services Offered by Treatment Centre

Which of the following services were offered to you by your treatment centre?

Q37: Which of the following services were offered to you by your treatment centre?Base : Global 2012 (2400)

Social worker 13% (0%,1%,3%,3%,2%)

Referral to external support provider 16% (0%,2%,4%,3%,2%)

Dietician/nutritionist 12% (0%,1%,2%,3%,1%)

Counsellor/psychologist 17% (0%,2%,3%,5%,2%)

Chaplain 3% (0%,0%,1%,1%,0%)

Physical therapy 5% (0%,1%,1%,1%,1%)

Pain management 5% (0%,1%,1%,1%,1%)

Complementary therapist 4% (0%,0%,1%,1%,0%)

None 19% (1%,2%,4%,2%,5%)

Other 6% (0%,1%,1%,1%,1%)


QUALITY OF LIFE: Services Offered by Treatment Centre

Which of the following services were offered to you by your treatment centre?

Q37: Which of the following services were offered to you by your treatment centre?Base : Global 2012 (2400)

Nurse 22% (2%,20%)

Doctor 29% (3%,26%)

Online research 12% (2%,11%)

Friend 5% (0%,4%)

Family member 7% (1%,6%)

Another patient 5% (1%,5%)

Patient support group 15% (2%,13%)

Other 6% (1%,5%)


QUALITY OF LIFE: How Information was Obtained

Who provided this information to you?

Q38: Who provided this information to you?Base : Global 2012 (1708)

Nurse 22% (1%,3%,5%,5%,3%)

Doctor 28% (0%,3%,6%,7%,4%)

Online research 13% (0%,2%,3%,2%,2%)

Friend 5% (0%,1%,1%,1%,0%)

Family member 6% (0%,1%,1%,2%,1%)

Another patient 5% (0%,1%,1%,1%,0%)

Patient support group 15% (0%,2%,3%,3%,2%)

Other 6% (0%,1%,1%,1%,1%)


QUALITY OF LIFE: How Information was Obtained

Who provided this information to you?

Q38: Who provided this information to you?Base : Global 2012 (1708)

Very helpful 27% (3%,24%)

Helpful 19% (3%,16%)

Uncertain 3% (0%,3%)

Somewhat helpful 7% (1%,6%)

Not helpful at all 2% (0%,2%)

Did not use one 43% (8%,35%)


QUALITY OF LIFE: Helpfulness of Support Group

Indicate how helpful the patient support group was for information and support?

Q39: Indicate how helpful the patient support group was for information and support?Base : Global 2012 (1380)

Very helpful 27% (0%,4%,7%,4%,3%)

Helpful 18% (1%,2%,5%,3%,2%)

Uncertain 3% (0%,0%,1%,0%,1%)

Somewhat helpful 7% (0%,0%,2%,1%,1%)

Not helpful at all 2% (0%,1%,0%,0%,0%)

Did not use one 43% (1%,4%,7%,8%,11%)


Indicate how helpful the patient support group was for information and support?

Q39: Indicate how helpful the patient support group was for information and support?Base : Global 2012 (1380)

QUALITY OF LIFE: Helpfulness of Support Group

Answered the phone/not voice mail 3% (0%,0%,1%,1%,0%)

Medical person to answer questions 13% (0%,2%,4%,2%,1%)

Had financial support 7% (0%,1%,2%,2%,1%)

Had a 24 hour support line 5% (0%,1%,1%,1%,0%)

Improved website 7% (0%,1%,2%,1%,1%)

More online presentations 5% (0%,1%,2%,1%,1%)

Better materials 4% (0%,1%,1%,1%,1%)

Better materials on my lymphoma 12% (0%,2%,4%,1%,2%)

Clinical Trial information 10% (0%,1%,3%,1%,1%)

More languages 1% (0%,0%,0%,0%,0%)

Someone to visit me at home 5% (0%,1%,1%,1%,0%)

Someone to visit me in treatment 5% (0%,0%,1%,1%,0%)

Had a support group 8% (0%,1%,3%,1%,1%)

Had an online support group 7% (0%,1%,3%,1%,1%)

Other 9% (0%,1%,2%,1%,1%)


QUALITY OF LIFE: Suggestions for Support Group

How could they have been more helpful?

Q40: How could they have been more helpful?Base : Global 2012 (1988)

CONCLUSION

It would appear that although awareness of these cancers has increased, misdiagnosis remains the same around the world. It is critical to educate the Practitioners and General Oncologists about lymphoma to reduce this threat to patients. Secondly, there is a place for patient support organizations to work alongside the healthcare community at the time of diagnosis to assist in education and all aspects of journey support. A formal and delicate structured process is required for this to take place. Thank you to all the patients who participated and shared their journey with us.

rezultati istraŽivanja-demografski učešće u anketi uzelo 1606 pojedinaca iz 17 zemalja širom...

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