The Danish National Penile Cancer Quality database

Figures & data

Table 1 Overview of DaPeCa-data

General information		Comments
Patient population	Incident penile cancer (penile squamous cell carcinoma)	Data collection since June 2011
Data coverage	Nationwide (centralized care since 2009 to two centers)	Two urological, two oncological, and two pathological sites participating in data registration
Data collection	Prospective	Data linkage from central registry combined with online prospective data collection of key clinical variables by treating clinicians
Clinical quality indicators	N=14
Clinical data registration forms	Diagnosis clinical data registration form Treatment clinical data registration form Recurrence form Follow-up form
PROM questionnaires	Pilot study since January 2013 At time of diagnosis 1-year follow-up 2-year follow-up 3-year follow-up
Treatments variables	Surgery	Primary penile surgery
		Lymph node surgery
	Radiation therapy	Inguinal
		Iliacal
	Combined chemoradiotherapy	Yes/no
Pathology variables	Biopsy definition	SNOMED codes P30610 biopsy, P30611 excisional biopsy, P30613 punch biopsy, P3061A incisional biopsy, or P30620 resection combined with SNOMED code T02530 skin on penis, T02540 skin on prepuce, T76330 prepuce, T7600 penis, or T76210 corpus cavernosum penis
	Penectomy definition	SNOMED codes P306X0 ectomy, or P306X4 tumorectomy combined with SNOMED codes T02530 skin on penis, T02540 skin on prepuce, T76330 prepuce, T7600 penis, or T76210 corpus cavernosum penis
	Lymphadenectomy definition and sentinel node biopsy definition	SNOMED code T08811 lymph node in the right inguinal region, T08812 lymph node in the left inguinal region, T0881B sentinel lymph node in the right inguinal region, or T0881C sentinel lymph node in the left inguinal region, squamous cell metastasis M80706, no extranodal extension M094B0, extranodal extension M094B1
	Grade of differentiation	High grade of differentiation (SNOMED code ÆYYD1), moderate differentiation (SNOMED code ÆYYD2), or low grade of differentiation (SNOMED code ÆYYD3)
	TNM stage	pTis (SNOMED code ÆF1810), pTa (SNOMED code ÆF181A), pTx (SNOMED code ÆF1870), pT1a (SNOMED code ÆF1831), pT1b (SNOMED code ÆF1832), pT2 (SNOMED code ÆF1840), pT3 (SNOMED code ÆF1850), and pT4 (SNOMED code ÆF1860)
	Surgical margin	Negative margin (SNOMED code M09400) and positive margin (SNOMED code M09401)
	Histological type	Squamous cell carcinoma (SNOMED code M80703)
	Histological subtype	Classical (SNOMED code M80703), verrucous carcinoma (SNOMED code M80513), basaloid (SNOMED code M81233), sarcomatoid (SNOMED code M80333), and adenosquamous (SNOMED code M85603)
Administrative variables	Region Hospital site Others

Note: TNM cancer stage classification according to UICC.

Abbreviations: DaPeCa-data, Danish National Penile Cancer Quality database; PROM, patient-reported outcome measure; TNM, tumor lymph node and metastasis; UICC, Union for International Cancer Control; SNOMED, Systematized Nomenclature of Human Medicine.

Table 2 Overview of DaPeCa-data variables

Diagnosis
Date of biopsy	Day/month/year
Has the patient been in contact with a highly specialized center?	Yes/no
Symptoms	None
	Bleeding
	Infection
	Lymph node enlargement
	Wound/tumor on penis
	Metastatic symptoms
	Others
Risk factors	None
	Phimosis
	Balanoposthitis
	Genital warts
	Previous circumcision
	Lichen sclerosus
	Others
Primary diagnosis based on	Clinical examination alone
	Histology
	Others
Primary tumor localization	Glans
	Prepuce
	Penile shaft
	Urethra
Imaging	CT
	MRI
	US
	Lymphoscintigraphy
	PET-CT
	None
Clinical TNM	T
	N
	M
Treatment
Date of treatment decision	Day/month/year
Primary treatment	Laser
	Local excision
	Glans amputation
	Glans amputation with skin graft
	Partial penectomy
	Total penectomy
Lymph node surgery	Yes/no
	Bilateral sentinel node/sentinel node
	left/sentinel node right
	Lymphadenectomy inguinal
	Lymphadenectomy iliacal
External beam radiation therapy (EBRT)	Curative intent/palliation
Chemotherapy	Yes/no
Combined chemoradiotherapy	Yes/no
Early complications demanding intervention (<3 months)	Reoperation
	Bleeding
	Wound infection
	Skin necrosis
	Meatal stenosis
	Lymphocele
	Thrombosis
	Lymphedema
	Erectile dysfunction
	Others
	No data
	None
HPV test on primary tumor	Negative/positive
Virus fag type	[.]
Cause of death	Penile cancer
	Others

Note: [.] Indicates that the virus fag type is entered in free text by the clinician via the database interface.

Abbreviations: CT, computed tomography; DaPeCa-data, Danish National Penile Cancer Quality database; HPV, human papillomavirus; MRI, magnetic resonance imaging; PET-CT, positron emission tomography/computed tomography; TNM, tumor lymph node and metastasis; US, ultrasound.

Table 3 Overview of DaPeCa-data quality indicators

ID	Name	Format (indicator standard)	Type	2013–2014
DaPeCa-indi-1	Referral pattern: fraction of patients with the diagnosis in contact with a highly specialized center	>75%	Process	93%
DaPeCa-indi-2	Sentinel node guideline adherence: fraction of relevant patients (cN0/cNx) undergoing sentinel node biopsy at diagnosis	>90%	Process	96%
DaPeCa-indi-3	Recurrence pattern: fraction of patients experiencing recurrence within five years of primary treatment	<50%	Result	No data
DaPeCa-indi-4	Blood transfusion: fraction of patients in need of pre- or postoperative blood transfusion	<10%	Process	0
DaPeCa-indi-5	30-day mortality: death within 30 days after primary treatment	<0.5%	Result	0
DaPeCa-indi-6	Pathology registration: fraction of patients with registration and coding of a complete set of key histopathology parameters	Under implementation	Process	No data
DaPeCa-indi-7	1- and 5-year overall survival after invasive penile cancer diagnosis, per center, and overall	Under implementation	Result	No data
DaPeCa-indi-8	1- and 5-year cancer-specific mortality after invasive penile cancer diagnosis, per center, and overall	Under implementation	Result	No data
DaPeCa-indi-9	1- and 5-year overall survival after inguinal lymph node dissection for lymph node-positive penile cancer, per center, and overall	Under implementation	Result	No data
DaPeCa-indi-10	1- and 5-year cancer-specific mortality after inguinal lymph node dissection for lymph node-positive penile cancer, per center, and overall	Under implementation	Result	No data
DaPeCa-indi-11	Time from diagnosis to inguinal lymph node dissection for lymph node-positive penile cancer, per center, and overall	Under implementation	Process	No data
DaPeCa-indi-12	Total number of in hospital days within 90 days after inguinal lymph node dissection for lymph node-positive penile cancer, per center, and overall	Under implementation	Result	No data
DaPeCa-indi-13	1- and 5-year overall survival after oncological treatment with curative intent for lymph node-positive penile cancer, per center, and overall	Under implementation	Result	No data
DaPeCa-indi-14	1- and 5-year cancer-specific mortality after oncological treatment with curative intent for lymph node-positive penile cancer, per center, and overall	Under implementation	Result	No data

Notes: cN0, clinically lymph node negative; cNx, clinical lymph node status not assessed/not reported.

Abbreviation: DaPeCa-data, Danish National Penile Cancer Quality database; ID, identification.