Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey

Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey

To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE...

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To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022 Bull Cancer 2016; //: ///

Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey

Original article

en ligne sur / on line on www.em-consulte.com/revue/bulcan www.sciencedirect.com

Pascal Hammel 1, Romain Coriat 2, Gérard Lledo 3, Mariella de Bausset 4, Marion Selosse 4, Stéphane Obled 5, Franck Bonnetain 6

Received 27 July 2016 Accepted 24 November 2016 Available online:

1. Beaujon Hospital (AP-HP), 100, boulevard du Général-Leclerc, 92110 Clichy, France 2. Cochin Hospital (AP-HP), 27, rue du Faubourg-Saint-Jacques, 75014 Paris, France 3. Jean-Mermoz Private Hospital, 55, avenue Jean-Mermoz, 69008 Lyon, France 4. Foundation ARCAD, 151, rue du Faubourg-Saint Antoine, 75011 Paris, France 5. University Regional Hospital (CHRU) of Nîmes, 30029, rue du Professeur-RobertDebré, 30900 Nîmes, France 6. Jean-Minjoz University Regional Hospital (CHRU), 3, boulevard Fleming, 25030 Besançon, France

Correspondence: Pascal Hammel, Digestive Oncology Department, Beaujon Hospital, AP–HP, 100, boulevard Leclerc, 92110 Clichy, France. [email protected]

Keywords Cancer Pancreas Care pathway Diagnosis Metastasis

Summary Data in the literature regarding the care pathway of pancreatic cancer patients are limited. The objective of the REPERE survey was to identify and describe the initial stages of the care pathway of pancreatic patients in the metastatic phase. From May to October 2015, 62 oncologists (ON) or gastroenterologists specialized in digestive oncology (GESDO) and 300 general practitioners (GP) completed an electronic questionnaire on the pathway of 728 patients recently diagnosed with metastatic pancreatic adenocarcinoma. Of these patients, 200 completed a questionnaire given by a specialized physician (ON/GESDO). Weight loss (65%), fatigue (53%) or anorexia (49%) were the main signs/symptoms that motivated the patients to seek medical advice. For 87% of patients, the general practitioner was the first medicine doctor they consulted. According to the respondents (patient, general practitioner or specialist), the median delay between the onset of the first symptoms and the final diagnosis of pancreatic cancer was between 41 and 65 days. This time lapse tended to decrease with associated jaundice ( 15 days on average, standard deviation = 8, P < 0.1 NS) or with patient concerns triggered by the first symptoms ( 11 days on average, standard deviation = 6, P < 0.05). On the contrary, the time lapse was longer (+14 days on average, standard deviation = 6, P < 0.05) when the general practitioner prescribed symptomatic treatment. In conclusion, diagnostic management of patients with metastatic pancreatic cancer should be accelerated with efforts to raise practitioners' awareness.

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tome xx > n8x > xx 2016 http://dx.doi.org/10.1016/j.bulcan.2016.11.022 © 2016 Published by Elsevier Masson SAS on behalf of Société Française du Cancer.

BULCAN-336

To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

Original article

P. Hammel, R. Coriat, G. Lledo, M. de Bausset, M. Selosse, S. Obled, et al.

Mots clés Cancer Pancréas Parcours de soins Diagnostic Métastases

Résumé Parcours de soins des patients atteints de cancer du pancréas métastatique en pratique courante en France : résultats de l'enquête nationale REPERE Les données dans la littérature concernant les parcours de soins des patients atteints de cancer du pancréas métastatique sont limitées. L'objectif de l'enquête REPERE était d'identifier et de décrire les premières étapes du parcours de soins de ces patients. De mai à octobre 2015, 62 oncologues (ON) ou gastro-entérologues spécialisés en oncologie digestive (GESOD) et 300 médecins généralistes (MG) ont été interrogés par questionnaire électronique sur le parcours de 728 patients récemment diagnostiqués pour un adénocarcinome du pancréas métastatique. Parmi eux, 200 patients ont été directement interrogés par un questionnaire remis par le médecin spécialiste (ON/GESOD). Les principaux signes/symptômes ayant motivé le patient à consulter étaient un amaigrissement (65 %), une fatigue (53 %) ou une anorexie (49 %). Le médecin généraliste était le premier acteur de soins consulté pour 87 % des patients. Selon les patients, médecins généralistes ou spécialistes interrogés, la médiane du délai estimé entre l'apparition des premiers symptômes et l'annonce du diagnostic définitif de cancer du pancréas variait de 41 à 65 jours. Ce délai tendait à diminuer en présence d'un ictère ( 15 jours en moyenne, écart-type = 8, p < 0,1 NS) ou d'une inquiétude du patient face aux premiers symptômes ( 11 jours en moyenne, écart-type = 6, p < 0,05). A contrario, il était allongé (+14 jours en moyenne, écarttype = 6, p < 0,05) en cas de prescription de traitements symptomatiques par le médecin généraliste. En conclusion, la prise en charge diagnostique des patients atteints de cancer du pancréas pourrait être accélérée par des efforts de sensibilisation des praticiens, notamment des médecins traitants.

Introduction

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With 11,328 estimated new cases in 2015 in France, pancreatic cancer is, in terms of incidence, the 9th cancer in men and the 7th cancer in women [1]. With an annual increase of 59.8% between 2005 and 2012, it has become one of the cancers with the fastest growing incidence rates over the past few decades [1]. While there has been a significant improvement in recent years in the survival rates for numerous types of cancer (colorectal, prostate or breast), the 5-year survival rate of patients with pancreatic cancer remains low: 5%–8% for unresectable tumors and 20%–30% in patients who have undergone curativeintent surgery and received adjuvant chemotherapy [1–5]. Regarding diagnosis, the main issue is that this cancer is asymptomatic for a long period of time, and when the signs consistent with the illness appear (a change in the general state of health, sudden weight loss, intense fatigue, jaundice, abdominal pain or back pain), the tumor is already at an advanced stage precluding a surgical resection [5,6]. It is estimated that at the time of diagnosis, 85%–90% of patients cannot be operated on and 60% of patients already have distant metastases [4,5,7,8]. Data in the literature regarding the care pathway of pancreatic cancer patients are limited. Nevertheless, recommendations to attending physicians were put forward by a working group from the French National Authority for Health (HAS) and the National Cancer Institute (INCa) in order to organize the coordination of patient care and to optimize patient management [2,3]. The attending physician is responsible for outpatient treatment as

well as working closely with a specialized team of health professionals (oncologists, gastroenterologists, radiologists, etc.). Multidisciplinary therapeutic management has several objectives: to inform the patient and those around him; to preserve her/his quality of life by administering supportive care often required in the presence of jaundice, denutrition and/or pain [2,3]; and finally, to propose adapted antitumor treatment decided during a multidisciplinary meeting. The French 2014– 2019 Cancer Plan, which aims to improve the coordination between the various steps of the patient's pathway right from the diagnosis of the disease, selected the care pathway as one of its objectives [9]. The main objective of the French survey REPERE ('REgards croisés sur le Parcours de soins des patiEnts avec un cancer du pancréas' – Multidisciplinary approach to the care pathway of pancreatic cancer patients) was to identify and describe the initial stages of the care pathway of patients with pancreatic cancer diagnosed at the metastatic stage and receiving first-line treatment, so that avenues for improvement can be determined as regards patient management.

Methodology A national survey was conducted between May and October 2015 targeting oncologists (ONs) or gastroenterologists specialized in digestive oncology (GESDOs) involved in the management of patients suffering from metastatic pancreatic adenocarcinoma, and general practitioners (GPs). Six hundred

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To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

Eligibility criteria In order to take part, the ONs/GESDOs were required to have treated a minimum of four patients with pancreatic adenocarcinoma, examined by them and diagnosed in the previous three months. The GPs were required to have treated at least one firstline metastatic patient diagnosed in the previous three months. Patients eligible were those seen in consultation for a metastatic adenocarcinoma before first-line treatment and with diagnostic assessment of 3 months or less.

Data collection The ON/GESDO and the GP had to complete an electronic questionnaire and fill out the initial stages of the care pathway of their patients in a standardized form. The patients recruited by their ON/GESDO had to complete an anonymous paper questionnaire. The data collected included following information: socio-demographic characteristics of the patients; symptoms leading to the first consultation; comorbidities, exams and tests prescribed before and after the first consultation; modalities of diagnosis announcement, patient referral to other health professionals prior to and post diagnosis; delay in treatment and type of treatment; involvement of the GP and the ON/GESDO in the treatment; doctor–patient relationship. All the materials used for data collection (standardized care pathway form; questionnaire for ONs/GESDOs; questionnaire for GPs; questionnaire for patients) had been created by a multidisciplinary scientific committee.

Statistical analysis The data collected were used to make a descriptive statistical analysis. Quantitative variables were expressed using means, standard deviations (SD), medians and extremes, and qualitative values with numbers of patients and percentages. Comparisons between sub-populations were drawn using Student's ttest for means and Pearson's Chi2 test for percentages. The retained significance threshold was P < 0.05.

Results Participation rate and characteristics of responding physicians Of the 627 ONs/GESDOs contacted, 216 refused outright, 285 refused after receiving the survey, 32 accepted but did not have the required number of patients, and 31 did not reply to any of the questions although they'd initially agreed to take part in the survey. The results of one respondent whose specialization was neither ON nor GESDO were not taken into

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account. In the end, 62 ONs/GESDOs actually took part in the survey, i.e. 10% of the physicians approached. Of the 10,561 GPs contacted by e-mail, 598 connected to the website: 143 gave up from the outset, 130 did not have enough patients to qualify, and 25 gave up during the process. Overall, 300 GPs completed the survey. The characteristics of the 62 ONs/GESDOs (34 ONs and 28 GESDOs) and the 300 GPs are presented in table I. Of the GPs, 86% worked near a hospital (less than an hour's travelling time). They had followed a median of three pancreatic cancer patients during the course of the previous year (SD = 7.4). The specialists had followed a median of 15 pancreatic cancer patients during the course of the previous year: 19%, less than five patients per month; 23%, between five and 10 per month; 21%, between 11 and 15 per month; 11%, between 15 and 20 per month; 13%, between 20 and 30 per month; and 13%, more than 30 per month.

Characteristics of the patients The average age of the 200 patients who answered the survey given by their ON/GESDO was 64.9 (SD = 10.2). Beyond the socio-demographic characteristics described in table II, it should be noted that the patients had declared the following comorbidities: high blood pressure (for 38% of them), diabetes (insulin-dependent or not) (30.5%), hypercholesterolemia (21%), arthrosis (16%), and other comorbidities (17%).

The care pathway The first consultation Patients and GPs, and ONs/GESDOs reported a median of 3 and 4 suggestive symptoms, respectively, as the initial signs of the disease. These were mostly weight loss (66%), fatigue (53%) or anorexia (47%) (table III). All three groups of respondents cited these as the most frequent symptoms. Table IV describes the reasons for first consultation reported by the 200 patient respondents: fatigue, concerns over the first symptoms, pain and pressure from those around. In 87% of cases, the GP was first choice for the first consultation; in 7% of cases, it was a private specialist; and in 6% of cases, a specialist working in a hospital. Attitude of GPs faced with the first symptoms During the first consultation, 95% of GPs requested further tests: primarily biological check-up (86%, of which 81% in first-line), abdominal ultrasound examination (76%, of which 59% in firstline) and/or a thoracic-abdominal-pelvic CT scan (69%, of which 12% in first-line). In 17% of cases, the GPs first prescribed symptomatic treatment before referring the patient to a specialist. In 83% of cases, pancreatic cancer was mentioned by the GP when referring the patient to the specialist. Time lapse between onset of the first symptoms and diagnosis The median delay between the onset of the first symptoms and the firm diagnosis of pancreatic cancer was 41 days according to

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and twenty-seven ONs/GESDOs and 10,561 GPs were invited by e-mail and by phone to take part in the survey and to complete an electronic questionnaire on the pathway of 728 patients diagnosed with metastatic pancreatic adenocarcinoma. In addition, 200 patients were surveyed directly, by means of a specific questionnaire handed to them by their ON/GESDO taking part in the survey.

Original article

Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey

To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

Original article

P. Hammel, R. Coriat, G. Lledo, M. de Bausset, M. Selosse, S. Obled, et al.

TABLE I Characteristics of the physicians who responded to the REPERE survey ON/GESDO

GP

Specialty Medical oncologist (ON) Gastroenterologist specialized in digestive oncology (GESDO)

34

55%

28

45%

PH/PUPH (Full time praticionner or professor)

43

69%

Associate practitioner

5

8%

Assistant, senior physician, resident

2

3%

No reply

12

19%

Male

45

72%

238

79%

Female

16

26%

62

21%

No reply

1

2%

0

0%

Role in the hospital

Gender

Age Median (standard deviation)

45 (7.5)

55 (7.6)

Under 40

15

24%

19

6%

Between 40 and 50

31

50%

82

27%

Between 50 and 60

14

23%

152

51%

Over 60 (max. 65)

1

2%

47

16%

No reply

1

2%

0

0%

Paris, Ile-de-France

22

35%

56

19%

North

7

11%

27

9%

North-east

8

13%

27

9%

Center, center-east

7

11%

66

22%

West

6

10%

34

11%

South-west

4

6%

38

13%

South-east

7

11%

51

17%

No reply

1

2%

1

0%

Inner Paris

11

18%

23

8%

Metropolis (100,000 inhabitants or more)

17

27%

66

22%

Big town (50,000–99,999 inhabitants)

17

27%

47

16%

Average town (10,000–49,999 inhabitants)

15

24%

62

21%

Small town (2000–9999 inhabitants)

1

2%

56

19%

Rural setting (less than 2000 inhabitants)

0

0%

46

15%

No reply

1

2%

0

0%

Region

4

Type of practice

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To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

TABLE I (Continued). ON/GESDO

GP

15 (6.5)

25 (8.0)

Length of service Median (standard deviation) 5–10 years

20

32%

25

8%

11–20 years

31

50%

80

27%

21–30 years

10

16%

139

46%

No reply

1

2%

56

19%

Original article

Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey

Type of activity (% per week) Average over 10 half days (standard deviation) Private practice

3% (0.3)

Group practice

46% (4.6)

State hospital: CHU/CHR/AP

36% (3.6)

Private practice

47% (4.7)

State hospital: CHG

38% (3.8)

Retirement home, EHPAD

7% (0.7)

CLCC

11% (1.1)

Dispensary, creche, PMI

1% (0.1)

Clinic, non-CLCC private hospital

12% (1.2)

Weekly caseload Median (standard deviation)

70 (37.3)

125 (122)

Less than 60 patients

21

34%

10

3%

60–80 patients

19

31%

26

9%

81–100 patients

10

16%

50

17%

101–120 patients

3

5%

61

20%

121–150 patients

3

5%

85

28%

More than 150 patients

1

2%

68

23%

No reply

5

8%

0

0%

ON: oncologists; GESDO: gastroenterologists specialized in digestive oncology; GP: general practitioners; PH: hospital practitioner; PUPH: university professor/hospital practitioner; CHU: University Hospital; CHR: Regional Hospital; AP: state assistance; CHG: general hospital; CLCC: cancer center; EHPAD: nursing home for the elderly; PMI: maternal and child welfare center.

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According to the ONs/GESDOs and the GPs, 27% and 20% of patients, respectively, could have been referred to a specialist sooner. The main reasons given for this delay were an initial consultation taken too late as a result of non-specific symptoms (30% of ONs/GESDOs, 48% of GPs), patients underestimating the importance of symptoms (30% of ONs/GESDOs, 46% of GPs), the time required to obtain an appointment with a specialist (11% of ONs/GESDOs, 22% of GPs), the delay incurred by patients before undergoing the tests prescribed (22% of ONs/ GESDOs, 16% of GPs), and the prescription of a treatment to relieve symptoms (in example, pain) (33% of ONs/GESDOs, 15% of GPs). Tests carried out before and after consulting with the ON/GESDO The median number of tests carried out before consulting with the ON/GESDO was four (SD = 2.1). These were mainly

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patients, 43 days according to ONs/GESDOs and 65 days according to GPs (figure 1). This delay varied according to the following criteria: it was reduced with jaundice ( 15 days on average, SD = 8, P < 0.1 NS) or with patient concerns faced with the first symptoms ( 11 days on average, SD = 6, P < 0.05); it was increased following the prescription of initial symptomatic treatment by the GP (+12 days on average, SD = 6, P < 0.05). Analysis by terciles of information given by the patients allowed us to distinguish those with a "fast'' care pathway (i.e. delay between first symptoms and diagnosis of less than two weeks; they had overall less epigastric pain and less fatigue as first symptoms) from those with a "slow'' care pathway (delay > 4 weeks; more often farmers, who had less often jaundice but more often abdominal pain). In our study, the potential role of diabetes in the duration of the care pathway has not been demonstrated.

To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

Original article

P. Hammel, R. Coriat, G. Lledo, M. de Bausset, M. Selosse, S. Obled, et al.

TABLE II

TABLE II (Continued).

Characteristics of the patients studied Gender Male

113

57%

Female

84

42%

No reply

3

2%

Age Median (standard deviation)

65 (10.2)

Under 40

1

1%

Between 40 and 50

16

8%

Between 51 and 60

51

26%

Over 60

126

63%

No reply

6

3%

Alone [single, widow(er)]

47

24%

Married, domestic partnership

143

72%

Institutionalized, retirement home

7

4%

No reply

3

2%

Paris, Paris region

60

30%

North

31

16%

North-east

25

13%

Center, center-east

22

11%

West

10

5%

South-west

16

8%

South-east

27

14%

No reply

9

5%

Inner Paris

30

15%

Metropolis (100,000 inhabitants or more)

24

12%

Big town (50,000–99,999 inhabitants)

50

25%

Average town (10,000–49,999 inhabitants)

43

22%

Small town (2000–9999 inhabitants)

36

18%

Rural setting (less than 2000 inhabitants)

17

9%

No reply

0

0%

105

53%

Family environment

Region

Home

Journey time from home to the hospital where patient was being treated at the time of completion of questionnaire

6

Less than 30 minutes

30–60 minutes

56

28%

60 minutes

28

14%

60–120 minutes

10

5%

More than 120 minutes

1

1%

Retired, inactive

125

63%

In work

42

21%

On sick leave

29

15%

No reply

4

2%

Self-employed fisherman or farmer

12

6%

Craftsman, merchant, business owner

29

15%

Manager, intellectual profession, liberal profession

22

11%

Intermediary profession, teacher

30

15%

Employee

48

24%

Worker

28

14%

No professional activity

24

12%

No reply

7

4%

Occupation

Type of activity

biological check-ups (90%) (including tumor markers such as CA19-9 for 69% of them), a thoracic-abdominal-pelvic CT scan (73%), a repeat clinical examination (50%), and a biopsy for histological examination (48%) (figure 2). After the consultation, the specialist prescribed a median of two additional examinations (SD = 1.7) (figure 3). This was often a biological checkup (58%), an evaluation of nutritional parameters (42%), a clinical examination (35%), a biopsy/anatomocytopathological examination (31%), a thoracic-abdominal-pelvic CT scan (30%), or an endoscopic ultrasonography (25%). The histological diagnosis was assessed on average 10.5 days after the consultation (SD = 60); the site biopsied was the pancreatic tumor in 60% of cases and a metastasis in 38% of cases (unknown site: 2%). Diagnosis announcement In 63% of cases, the cancer diagnosis was announced by the GESDO, in 25% of cases by the ON, in 8% of cases by the GP and in 6% of cases by the surgeon. The total exceeds 100% as some patients gave several answers. The median duration of consultation was 30 minutes (Lower quartile = 25; Upper Quartile = 40). This duration was considered satisfactory by 80% of patients. The patient's perception of her/his relationship with the ON/GESDO was as follows: s/he took the time to listen to her/him (73%) and to offer explanations during diagnosis announcement and at the beginning of treatment (78%). In

tome xx > n8x > xx 2016

To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

TABLE III Description of the first signs/symptoms of the disease Suggestive symptoms

Patients (n = 200)

Average number of reasons cited (standard deviation)

ONs/GESDOs (n = 303 patient cases)

GPs (n = 402 patient cases)

3 (2)

4 (2)

3 (2)

Weight loss

126 (63%)

214 (71%)

250 (62%)

Fatigue

106 (53%)

169 (56%)

207 (51%)

Anorexia

113 (57%)

157 (52%)

173 (43%)

Jaundice

78 (39%)

136 (45%)

145 (36%)

Epigastric pain

63 (32%)

115 (38%)

143 (36%)

Other abdominal pain

82 (41%)

87 (29%)

128 (32%)

Back pain

33 (17%)

54 (18%)

66 (16%)

Diarrhea

22 (1%)

1 (9%)

68 (15%)

Vomiting

23 (12%)

52 (2%)

1 (9%)

Other digestive problems

29 (15%)

21 (7%)

42 (10%)

Pruritus

12 (6%)

28 (9%)

31 (8%)

Other reason, no reply

16 (8%)

49 (16%)

Original article

Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey

Pain

Digestive symptoms

GP: general practitioner; ON: oncologist; GESDO: gastroenterologists specialized in digestive oncology.

TABLE IV Reasons for attending the initial consultation, as indicated by the 200 patients surveyed Reasons given

Number of reasons

Fatigue

98 (52%)

Concerns triggered by symptoms

87 (46%)

Pain

79 (41%)

Pressure from others

54 (29%)

Difficulty coping with the symptoms

33 (17%)

Desire to go for a check-up/examination

17 (9%)

Other reason

23 (12%)

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had been given further information on their disease, 48% of patients were provided with information on the care pathway after diagnosis, and 65% of patients said they had been comforted and listened to satisfactorily. The meeting with an announcement nurse took place more often at a general hospital ('CHG') or a clinic (in 65% of cases, according to the patients) than at a university hospital ('CHU') (in 41% of cases, according to the patients). The consultation to deliver diagnosis was longer at the 'CHUs' (38 minutes, according to the patients) than in at the 'CHGs'/clinics (31 minutes; P < 0.05). During the delivery of diagnosis, a dietician/nutritionist and psychologist were the health professionals most frequently encountered by patients, who had a high level of satisfaction (figure 3). Initial treatment After cancer diagnosis, the first treatment proposed was a chemotherapy (92% of ON/GESDO's patients), biliary or digestive stenting (22% of patients), or palliative surgery (4%). In 2% of cases, patients were given by their ON/GESDO the option of participating to a clinical trial. In 9% of patients, a surgical resection of the primary pancreatic tumor was performed. As far as supportive care is concerned, 68% of ON/GESDO's patients met with a dietician/nutritionist, 62% with a

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addition, only 51% of patients said they could ask the specialist the questions they wanted at the time of diagnosis, and 57.5% upon treatment initiation. Often the patient was accompanied by a close relative (73%). Then, half the patients (52%) met with a dedicated announcement nurse who delivered the news: 70% of patients considered that the nurse had given useful further information concerning treatment, 59% of patients considered that they

To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

Original article

P. Hammel, R. Coriat, G. Lledo, M. de Bausset, M. Selosse, S. Obled, et al.

According to PATIENTS

21 days (Q1 = 14; Q3 = 28) st

1 SYMPTOMS

1 CONSULTATION

28 days (Q1 = 14; Q3 = 48,75)

According to ONs/GESDOs

According to GPs

1 day (Q1 = -2,25; Q3 = 20,75) 1ST ON/GESDO CONSULTATION

5 days (Q1 = -7; Q3 = 21)

14 days (Q1 = 7; Q3 = 15) 1ST SPECIALIST 1ST GP CONSULTATION CONSULTATION

8 days (Q1 = -4; Q3 = 32)

DISCOVERY OF TUMOR MASS

1st SYMPTOMS

28 days (Q1 = 21; Q3 = 56) 1st SYMPTOMS

14 days (Q1 = 0; Q3 = 28) st

DIAGNOSIS

TOTAL TIME LAPSE 41 days (Q1 = 28; Q3 = 56)

DIAGNOSIS

TOTAL TIME LAPSE 43 days (Q1 = 28; Q3 = 71)

DIAGNOSIS

TOTAL TIME LAPSE 65 days (Q1 = 31; Q3 = 105)

Figure 1 Median estimated delay between the first symptoms and diagnosis of pancreatic cancer (in days) GP: General Practitioner; ON: Oncologist; GESDO: GastroEnterologists Specialized in Digestive Oncology; Q1: lower quartile; Q3: Upper quartile.

Figure 2 Further examinations carried out before or after the initial consultation with the ON/GESDO ON: oncologist; GESDO: gastroenterologists specialized in digestive oncology.

psychologist, 32% with a social worker and/or 23% with a physician specialized in pain. Two percent of patients took part in patient groups or attended a listening and information point.

Discussion

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The REPERE National Survey is the first quantitative survey conducted in France describing the initial stages of the care pathway of 728 metastatic pancreatic cancer patients based on data from cancer specialists (ONs/GESDOs), GPs and the patients themselves. This survey confirmed the complexity and specificity of pancreatic cancer management, as it is mainly diagnosed at an

advanced stage [3–5,7,8]. Faced with the initial non-specific symptoms of the disease, the patient is unaware of the severity of the disease s/he is suffering from and might delay seeking consultation [10]. The time lapses declared in the survey between the initial symptoms and the first medical consultation are consistent with those relating to an analysis of the Register performed by Jooste et al. [11] between 2009 and 2011, according to which there was a time lapse of over a month between the initial symptoms and the first consultation in 46% of pancreatic cancer patients. In the REPERE survey, the perceived time lapse was not the same depending on the category of respondents: the delay between

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To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

Original article

Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey

Figure 3 Professionals recommended upon diagnosis announcement to assist the patient: rates of proposal, acceptance and satisfaction

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accompanied by abdominal pain, should lead to the urgent completion of an imaging procedures and, particularly, ultrasound examination and abdominal CT scan. The link between diabetes and pancreatic cancer is well known and has been confirmed in our survey [5,12–14]. The simultaneous appearance of type 2 diabetes and symptoms suggestive of a digestive disease (pain, diarrhea caused by maldigestion, etc.) should lead to evoke a pancreatic disease and to perform imaging examination of this organ. In our survey, the median duration of the cancer announcement consultation, performed by a GESDO in 63% of cases and an ON in 25% of cases, was 30 minutes. This figure was lower than those (34–70 minutes) reported in a national survey conducted in 58 voluntary establishments in 15 French regions in 2004–2005 [15]. The duration measured in the REPERE survey may seem short taking into account the huge amount of information to be delivered to the patient, about the causes of the tumor, prognostic aspects, necessity for biliary stenting, antitumor treatment, supportive care, etc. In practical terms, these results need to be qualified because the healthcare worker delivering the diagnosis is not necessarily the person who will be implementing the treatment strategy and who will take the time needed to explain it during a further visit. In our survey, using a nurse to deliver diagnosis was more frequent at CHGs/clinics than CHUs (65% vs. 41%); this could explain why the length of consultation was shorter at CHGs and clinics (34 minutes) than at CHUs (43 minutes, P > 0.001). Even though 80% of patients considered that the duration of the consultation was satisfactory, the differences in situation must be taken into account owing to the standard deviation of this measurement (15.3 minutes), even more so as a meeting with an announcement nurse was only proposed half the time on average.

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the initial symptoms and diagnosis delivery was estimated shorter for the patients (41 days) than for the ONs/GESDOs (43 days) and the GPs (65 days). The shorter time period indicated by the patient may give the impression that he perceives the day when radiological findings as being the date of diagnosis than the day of the more official cancer announcement consultation. In the REPERE survey, the diagnostic delay was shorter in presence of jaundice or patient concerns with the onset of the first symptoms. These results are consistent with literature: indeed, longer delay in the care pathway was reported in the absence of jaundice and presence of metastases [10,11]. Excluding obvious symptoms like jaundice, pain or intense anxiety, there only seemed to be a sense of urgency after several examinations and confirmation of the tumor through imagery. In our study, 92% of patients received chemotherapy. These patients may have had a shorter delay from first symptoms to diagnosis compared to the remaining 8% of patients. Thus, the duration of the care pathway may have been underestimated. In addition, the variation in this delay may be related to a bias in patient recruitment (i.e. patients receiving chemotherapy). It is not excluded that some patients were not referred to the specialists after diagnosis due to the fact that they were unable to receive antitumor treatment or refused it. The high rate of patients who received chemotherapy in our study (92%) could indicate a bias in the selection of this population, i.e. patients with acceptable general condition and performance status that would allow the administration of chemotherapy (i.e. PS of 0 to 2). The GP's role in initial patient management is emphasized by our survey. S/he was the first physician consulted for 87% of patients, and her/his initial decisions seemed to have an impact on the time elapsed before diagnosis. The onset of associated symptoms like fatigue, weight loss or anorexia, especially when

To cite this article: Hammel P, et al. Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey. Bull Cancer (2017), http://dx.doi.org/10.1016/j.bulcan.2016.11.022

Original article

P. Hammel, R. Coriat, G. Lledo, M. de Bausset, M. Selosse, S. Obled, et al.

In our study, it is somewhat surprising to see that 9% of patients had surgical resection of the primary pancreatic tumor although they had metastases. The study did not assess the precise number and location of metastases (i.e. peritumoral or distant), whether they were discovered postoperatively or before administering adjuvant chemotherapy, nor the reason why surgeons performed resection despite the presence of such metastases. In the REPERE survey, 72% of patients had supportive care at the beginning of treatment by a dietician/nutritionist (68% of cases), a psychologist (62%), a social worker (32%) or a physician specialized in pain management (23%). This rate, which seems unsatisfactory, can be linked to the problems of implementing supportive care in some establishments. For such a severe cancer, the objective should be to systematically propose supportive care not only at the time of diagnosis but also during all the therapeutic management [16,17]. Certain biases may limit the interpretation of our results. Since the survey was based on statements, the accuracy of the information collected retrospectively from the different players cannot be guaranteed, which inherently limits our work. Moreover, the limited participation of ONs/GESDOs (only 10% of the specialists approached) and the under-representation of practitioners working at regional cancer centers ('CRLCCs'), and consequently of the patients treated at these centers, can reduce

the representativeness of the data collected. The other limit is the absence of control loop in the inclusion criteria, which did not enable to ascertain the consistency of the time lapses declared. The objective of the chosen methodology was to work with separate samples of ONs/GESDOs and GPs, so that GPs would not be over-selected with respect to their counterparts specialized in pancreatic cancer. The high standard deviations regarding the delay before diagnosis (which was 30, 59 and 64 days for patients, ONs/GESDOs and GPs, respectively) indicate high individual variability and/or the difficulty for all of them to put a date to events. In spite of these methodological reserves, the learning from the REPERE survey seem interesting. Even though significant progress has been achieved in the management of pancreatic cancer patients in France during the past decade, this survey confirms that awareness-raising efforts are still needed, especially to reduce the delay to diagnosis, the diagnosis announcement procedures and the access to supportive care. Acknowledgements: we would like to acknowledge our thanks to all the patients and physicians who took part in this survey and CELGENE for its institutional support for this research. Disclosure of interest: the authors declare that they have no competing interest.

Supplementary data Supplementary data associated with this article can be found, in the online version, at http://dx.doi.org/10. 1016/j.bulcan.2016.11.022.

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Original article

Care pathway of patients with metastatic pancreatic cancer in daily practice in France: Results from the REPERE national survey