Guidelines play an important role in Dutch healthcare. A guideline is a document with recommendations aimed at improving the quality of care, based on systematic summaries of scientific research and assessments of the advantages and disadvantages of the different care options, supplemented with care professionals’ expertise and experiences and care users guidelines, March 2012). Guidelines are mainly used for decision-making and as a professional frame of reference.
Specific guidelines with attention devoted to men with breast cancer:
Breast cancer guideline: 2.0, national guideline, National Breast Cancer Consultation the Netherlands (NABON) (2012)
(target group: all healthcare providers involved in the care of patients with breast cancer)
This guideline contains a chapter of male breast cancer with recommendations for diagnostics, primary treatment, survivorship care and metastatic disease. Much of the treatment for men with breast cancer is derived from the treatment for women with breast cancer.
NHG standard breast cancer, Dutch General Practitioners Association (NHG) (2016) (target group: general practitioners)
This guideline for general practitioners indicates the importance for men who present with complaints of the breast and/or nipple to have supplementary diagnostics performed or be referred for these. This guideline does not elaborate further on diagnostics and policies in men. Attention is devoted to referring to a clinical geneticist for men. A man with breast cancer always has an indication for referral to a clinical geneticist for DNA testing. With a determined BRCA mutation in a man, a referral or consultation from a clinical geneticist may be necessary for questions about the desire to have a child, informing family members and/or the need for psychosocial support.
Guideline for diagnostics and prevention of hereditary and familial tumours, Foundation for the detection of hereditary tumours and the Netherlands Association of Clinical Genetics, the Oncogenetics working group, StOET-VKGN (2017) (Blue Booklet):
This handbook contains information about the characteristics of the most common forms of hereditary tumours, the diagnostic criteria, criteria for DNA diagnostics and the guidelines for periodic examinations and preventive surgery. Information is also provided about the organisation and methods used by the departments of Clinical Genetics and the Foundation for the detection of hereditary tumours.
There is always an indication for DNA testing for BRCA1/2 mutations with a somewhat increased risk of breast cancer and possibly also prostate and pancreatic cancer for a man with breast cancer. In the case of a determined BRCA1/2 mutation, there is also the risk of passing this gene mutation on to children of any gender.
Guideline for informing family members of hereditary cancer, Association of Clinical Genetics in the Netherlands (VKGN) (2012):
(target group: all members of the VKGN who are involved in the care of patients with hereditary or familial cancer)
The purpose of this guideline is to inform family members of patients with a hereditary or familial disposition for cancer as well as possible, allowing them to make an informed choice about how to use this information. The guideline uniformly describes how clinical genetics departments inform family members if a hereditary/familial determined increased risk of cancer has been established in a family.
General guidelines for breast cancer do not devote specific attention to men with breast cancer
Breast Cancer Guideline, Royal Dutch Society for Physiotherapy (KNGF) (2009):
(target group: physiotherapy and edema therapists)
This guideline explains the medical interventions and how clinimetry and physiotherapy interventions are applied. No specific attention is devoted to men with breast cancer in this guideline.
Lymphedema guideline, Dutch Society for Dermatology and Venerology (NVDV), (2014)
(target group: all healthcare providers involved in the care of patients with lymphedema)
This guideline focuses on what, according to current standards, is the best care for patients with lymphedema. The guideline covers the following subjects:
– Monitoring of patients with (a risk of) lymphedema
– Methods for measuring edema and other clinimetric instruments
– Methods for supplementary diagnosis and the value of lymph scintigraphy
– The different treatment options and the moment of treatment
– The role of patients’ associations
Cancer Pain Guideline, Dutch Association of Anaesthesiology (NVA), (2015)
The Guideline is limited to pain in cancer patients and applies to both the curative and palliative phases.
Guideline for detecting the need for psychosocial care, national guideline, working group guideline for detecting the need for psychosocial care, (2017)
(target group: all professionals involved in the diagnosis, treatment and support of adult cancer patients in the 1st, 2nd and 3rd years line))
The guideline indicates the importance of systematically measuring distress and which lists can be used for this. The so-called Distress Thermometer: http://www.lastmeter.nl/ is often used. The instrument provides structure and tools for discussing the problems and possible referral with the patient.
The guideline also provides recommendations for:
– suitable measurement moments
– the conversation and basic psychosocial care
– organisational peripheral conditions
Guidelines for palliative care, the Dutch Integrated Cancer Centre (IKNL), (2017)
(target group: doctors, nurses, pharmacists or others who are professionally involved with patients who experience pain during the final phase of their life)
Pallialine describes guidelines for palliative care according to recent insights in diagnostics and treatment for palliative care.
Cancer and Work Guidelines, Dutch Association for Occupational Medicine, (NVAB), (2017) (NVAB), (2017)
(target group: company doctors)
The ‘Cancer and Work’ guideline has been developed for occupational physicians with the aim of maintaining and returning people with cancer to work.