Question

Which Psychosocial care and guidance can be given to patients with brain metastases?

Recommendation

The provision of basic psychosocial care entails timely detection of problems and providing information and support to patients and their family / voluntary carers.

Special attention is needed for problems in the area of behavioural changes as a result of tumours in the brain.

If required, referral should take place to specialised care providers such as psychologists or social workers.

Further research on the use of the Distress Thermometer, as described in the guideline ‘Screening for psychosocial distress', in patients with brain metastases is recommended.

Conclusions

Complaints of anxiety, mood problems, changes in behaviour and personality and cognitive problems are common in patients with brain metastases.
Oneschuk, 1998 (4);Kaal, 2005 (5)

These problems may be associated with physiological changes and use of medication.

There are no indications in the literature for use of the Distress Thermometer in patients with brain metastases.

Literature summary

Psychosocial problems
A cancer diagnosis and the often taxing treatments have a large impact on the psychological wellbeing of patients and their families. Aside from the emotional and psychosocial responses associated with cancer, patients often fear mental decline in the case of brain metastases.

Common symptoms in patients with brain metastases are fatigue, reduced wellbeing, anxiety and insomnia. In addition, depression, pain, poor appetite and shortness of breath are reported. These symptoms occur both before and after radiotherapy (Chow, 2008 (1)). Quality of life rapidly worsens for a portion of patients with brain metastases, even with palliative radiotherapy (Bezjak, 2002 (2)). Patients with a better prognosis (RPA classification) appear to benefit from radiotherapy with respect to their quality of life (Wong, 2008 (3)).

In patients with brain metastases, disorders in cognitive functioning and/or behavioural and personality changes are also detected. These may be caused by the location of the metastasis, by the therapy (such as dexamethasone, chemotherapy or antiepileptics) or through systemic disease. On the cognitive level, patients may suffer from memory problems, problems with the speed of motor function (the execution of tasks), with attention and concentration, aphasia and neglect (Oneschuk, 1998 (4);Kaal, 2005 (5)). Changes in behaviour and the characteristic features of the patient's personality may express in reduced initiative or apathy, impulsiveness or uninhibitedness, aggressiveness and socially inappropriate behaviour (Oneschuk, 1998 (4)). These symptoms often have far-reaching consequences for the daily lives of patients and their families. The role of the patient within the family and in their relationship changes. Social contacts may lessen because family members or friends become unsure how they should approach the patient. Voluntary carers often become overloaded in the process of palliative care, certainly if this extends over a longer period of time (Broekhuis, 2008 (6)). Specific attention and guidance for voluntary carers may be desirable.

Psychosocial care
In principle, psychosocial care is offered by the healthcare providers of the patient, such as the medical specialist, (oncology) nurse or general practitioner. They form part of the team guiding the patient. Basic psychosocial care consists of providing information, making decisions in a collaborative manner, showing empathy, providing support, discussing the consequences on the quality of life and detecting psychosocial problems. Sometimes the care provided by this team may be insufficient for patients to adjust to their progressive disease and associated effects. Aside from basic psychosocial care, these patients may need extra specialised psychosocial and/or paramedic care from psychologists, social workers or spiritual care providers, for example.
In the case of brain metastases, it is important for patients and their families to be well informed about the fact that changes in physical functioning, cognition and behaviour are to be expected. However, detailed information about symptoms that are not yet sure to arise, will no doubt increase uncertainty and anxiety of patients and their environment. Through regular communication with the patient, it should become apparent what patients are suffering from and the relevant information may then be provided on the basis of their symptoms. This also allows for a regular inventory of the load capacity and burden of those involved. The symptoms considered to be the most debilitating by treating physicians are not necessarily the symptoms that are experienced as the most burdensome by patients. Use of the Distress Thermometer is recommended by the guideline ‘Screening for psychosocial distress', through which a patient may indicate the most important symptoms themselves on a physical, practical, social, psychological and spiritual level with little effort. The (oncology) nurses may subsequently further explore the nature and intensity of the problems with the patient and provide advice. They can also evaluate whether a patient is able to complete the Distress Thermometer and whether the instrument is of added value during their conversation.

Patients often feel guilty about the development of symptoms such as anxiety and depression. They blame themselves that they are not strong enough and have the feeling that they are even more of a burden to their family. It may help patients when they hear from the care provider that anxiety and depression are a common response to this phase of the disease and they may also be result from changes in physiological functioning or from medication. The patient is central in the disease process and family members therefore often do not easily ask for help themselves, although they may often experience a lot of suffering. Caring for and dealing with a family member who has a life-threatening disease is difficult. Changes in patients' behaviour may lead to conflicts in their home situation. It may help family members of patients a lot if the care provider has attention for these problems. The point of departure should be strengthening the load capacity of the family members in order to manage this difficult situation.

References

  1. 1 - Chow E, Fan G, Hadi S, Wong J, Kirou-Mauro A, Filipczak L. Symptom clusters in cancer patients with brain metastases. Clin Oncol (R Coll Radiol ) 2008 Feb;20(1):76-82.
  2. 2 - Bezjak A, Adam J, Barton R, Panzarella T, Laperriere N, Wong CS, et al. Symptom response after palliative radiotherapy for patients with brain metastases. Eur J Cancer 2002 Mar;38(4):487-96.
  3. 3 - Wong J, Hird A, Kirou-Mauro A, Napolskikh J, Chow E. Quality of life in brain metastases radiation trials: a literature review. Curr Oncol 2008 Oct;15(5):25-45.
  4. 4 - Oneschuk D, Bruera E. Palliative management of brain metastases. Support Care Cancer 1998 Jul;6(4):365-72.
  5. 5 - Kaal EC, Niel CG, Vecht CJ. Therapeutic management of brain metastasis. Lancet Neurol 2005 May;4(5):289-98.
  6. 6 - Broekhuis D, Kuin Y, Verhagen CAHHVM, Vissers KCP, Prins JB. Mantelzorgers van oncologiepatiënten in de palliatieve fase. Ervaren belasting en coping. Nederlands Tijdschrift voor Palliatieve Zorg 2008;3/4:69-75.

Authorization date and validity

Last review : 01-07-2011

Last authorization : 01-07-2011

The period of validity of the guideline (maximum of 5 years) is being monitored by IKNL. For various reasons, it may be necessary to revise the guideline earlier than intended. Sections of the guideline will be amended in the interim, when required.

Initiative and authorization

Initiative : Nederlandse Vereniging voor Neurologie

Authorized by:
  • Nederlandse Vereniging van Artsen voor Longziekten en Tuberculose
  • Nederlandse Vereniging voor Medische Oncologie
  • Nederlandse Vereniging voor Neurochirurgie
  • Nederlandse Vereniging voor Neurologie
  • Nederlandse Vereniging voor Radiotherapie en Oncologie
  • Verpleegkundigen en Verzorgenden Nederland
  • Nederlandse Vereniging voor Psychosociale Oncologie
  • Nederlands Instituut van Psychologen

Scope and target group

Objective

The guideline covers the processes of diagnosis, treatment, information provision and guidance of adult patients with metastases in the brain originating from solid tumours, thereby focusing on topical clinical problems encountered in daily practice. The guideline's recommendations aim to aid practitioners in their decision-making support when facing these problems. The recommendations are based on the highest available grade of scientific evidence and on consensus within the guideline development group. The guideline provides information on how the recommendations have been reached from the evidence.

 

The guideline may be used to provide information to patients and offers points of reference for transmural agreements or local protocols to facilitate implementation.

Users

The guideline is intended for all professionals involved in the diagnostics, treatment and guidance of adult patients with brain metastases of solid tumours. These professionals include:

  • Primary specialists: neurologists, neurosurgeons, radiotherapists, medical oncologists, pulmonologists, (oncology) nurses, general practitioners, specialists (working) in palliative care
  • Supporting specialists: radiologists, pathologists
  • Healthcare providers specialised in psychosocial care: social workers, psychologists, psychiatrists and geriatric medicine specialists

 

Member of workgroup

2011:

Chair:

mw. dr. J.M.M. Gijtenbeek, neuroloog, Universitair Medisch Centrum St Radboud, Nijmegen

Other members:

dr. L.V. Beerepoot, medisch oncoloog, St. Elisabeth Ziekenhuis, Tilburg

dr. W. Boogerd, neuroloog, Nederlands Kanker Instituut / Antoni van Leeuwenhoekziekenhuis, Slotervaartziekenhuis, Amsterdam

mw. S. Bossmann, nurse practitioner, Universitair Medisch Centrum St Radboud Nijmegen

mw. dr. M. van Dijk, internist-oncoloog, Maastricht Universitair Medisch Centrum, Maastricht

mw. dr. A.C. Dingemans, longarts, Maastricht Universitair Medisch Centrum, Maastricht

mw. dr. C. van Es, radiotherapeut-oncoloog, Utrecht Universitair Medisch Centrum, Utrecht, niet actief betrokken (is betrokken geweest bij het initiëren van de werkgroep maar kon vanwege onvoorziene omstandigheden niet aan de totstandkoming van de richtlijn meewerken)

dr. A. de Graeff, medisch oncoloog, Utrecht Universitair Medisch Centrum, Utrecht

dr. P.E.J. Hanssens, radiotherapeut-oncoloog, Gamma Knife Centrum, Tilburg

dr. H.F.M. van der Heijden, longarts, Universitair Medisch Centrum St Radboud, Nijmegen

dr. M.A.A.M. Heesters, radiotherapeut-oncoloog Universitair Medisch Centrum Groningen, Groningen

dr. P.A. M. Hofman, neuroradioloog, Maastricht Universitair Medisch Centrum, Maastricht

dr. R.L.H. Jansen, medisch oncoloog, Maastricht Universitair Medisch Centrum, Maastricht, niet actief betrokken

drs. E. Kurt, neurochirurg, Medisch Centrum Alkmaar

dr. F. J. Lagerwaard, radiotherapeut-oncoloog, Vrije Universiteit Medisch Centrum, Amsterdam

mw. prof.dr. J.B. Prins, klinisch psycholoog, Universitair Medisch Centrum St Radboud, Nijmegen

drs. J.H.C. Voormolen, neurochirurg, Leids Universitair Medisch Centrum, Leiden

drs. V.K.Y. Ho, epidemioloog/procesbegeleider, Integraal Kankercentrum Nederland (IKNL), locatie Utrecht

mw. M.L. van de Kar, ambtelijk secretaris, Landelijke Werkgroep Neuro-Oncologie (LWNO), Bussum

Ondersteuning methodologie

mw. dr. M. Brink, epidemioloog, IKNL, locatie Utrecht

drs. J.M. van der Zwan, MSc, epidemiologisch onderzoeker, IKNL, locatie Enschede

 

Leden werkgroep voorgaande revisie (2004)

dr. R.H. Boerman, neuroloog, Rijnstate Ziekenhuis, Arnhem (voorzitter)

dr. W. Boogerd, neuroloog, Nederlands Kanker Instituut / Antoni van Leeuwenhoekziekenhuis, Slotervaartziekenhuis, Amsterdam

mw. dr. W.M.H. Eijkenboom, radiotherapeut-oncoloog, Daniel den Hoed Kliniek, Rotterdam

dr. P.E.J. Hanssens, radiotherapeut-oncoloog, Dr. Bernard Verbeeten Instituut, Tilburg

dr. R.L.H. Jansen, medisch oncoloog, Academisch Ziekenhuis Maastricht

dr. F. J. Lagerwaard, radiotherapeut-oncoloog, Vrije Universiteit Medisch Centrum, Amsterdam

prof.dr. C.J.A. Punt, inetrnist-oncoloog, Academisch Ziekenhuis Nijmegen

drs. J.H.C. Voormolen, neurochirurg, Leids Universitair Medisch Centrum, Leiden

prof.dr. J.T. Wilmink, neuroradioloog, Academisch Ziekenhuis Maastricht

dr. J.G. Wolbers, neurochirurg, Academisch Ziekenhuis Dijkzigt, Rotterdam

 

 

Declaration of interest

All guideline working group members were asked to fill in a conflict of interest declaration, in which they stated ties with the medical industry at the start and completing the guideline process. An overview of these conflict of interest declarations can be found below. The remaining guideline working group members have declared that at this moment or in the last three years they have not performed any activities on invitation or with subsidy/sponsoring by the medical industry.
   

Lid

Firma

Activiteit

Overig

Dr. L.V. Beerepoot

Pfizer

Merck

Cephalon

consultatie / advisering

congres

congres

congres

Dr. W. Boogerd

Mundipharma

 

congres

Dr. M. van Dijk

Schering Plough

 

congres

Dr. A.C. Dingemans

Roche

 

Lilly

Astra Zeneca

 

Glaxo

consultatie / advisering / wetenschappelijk onderzoek

consultatie / advisering

consultatie / advisering / wetenschappelijk onderzoek

consultatie / advisering / wetenschappelijk onderzoek

congres

 

cursus

Dr. C.A. van Es

Elektra

 

congres

Dr. A. de Graeff

 

Nycomed

Wyeth

consultatie / advisering

consultatie / advisering

 

Dr. P.A.M. Hofman

Strijker NL B.V.

Medtronics Spinal

Bayer Health Care

Johnson & Johnson

 

congres

congres

congres

congres

Dr. H.F.M. van der Heijden

Astra Zeneca

Sanofi Aventis

Lilly

 

Roche

consultatie / advisering

consultatie / advisering

consultatie / advisering / wetenschappelijk onderzoek

 

congres

congres

congres

 

congres

Dr. R.L.H. Jansen

Pfizer

Roche

Sanofi Aventis

Diverse firma's

 

 

wetenschappelijk onderzoek

studies

congres

congres

congres

Dr. F.J. Lagerwaard

Roche Nederland

Roche NL-longadviesraad

Brain Lab

Varian Medical Systems

wetenschappelijk onderzoek

consultatie / advisering

 

 

 

congres

congres

   

Method of development

Evidence based

Implementation

Considerations concerning the implementation of the guideline as well as the feasibility of recommendations have been taken into account as much as possible in drafting the revised guideline.

 

The guideline is summarised and may be consulted in its entirety on http://www.oncoline.nl/. The guideline has been brought to the attention of members of the LWNO, hospitals in the Netherlands, oncology commissions, as well as the scientific and professional associations involved. To further stimulate awareness and implementation of the guideline, regional tumour working groups on neuro-oncology of IKNL were invited to discuss its recommendations.

 

Given the highly progressive and unfavourable course of the disease, the guideline development group decided not to develop care indicators to measure the level of guideline implementation.