Online supplementary material
Attitudes and preferences towards monitoring symptoms, distress and quality of life in glioma patients and their informal caregivers 1
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Florien W. Boele , Cornelia F. van Uden-Kraan , Karen Hilverda , Jaap C. Reijneveld , Wilmy 1 1 2,3 Cleijne , Martin Klein , Irma M. Verdonck-de Leeuw 1
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Department of Medical Psychology, VU University Medical Center, Department of Otolaryngology – 3 Head & Neck Surgery, VU University Medical Center, Clinical Psychology, VU University, 4 Department of Neurology, VU University Medical Center, PO Box 7057, 1007 MB Amsterdam, the Netherlands. Correspondence: Irma Verdonck-de Leeuw –
[email protected] , Department of Otolaryngology – Head & Neck Surgery, 2 Y 114, VU University Medical Center, De Boelelaan 1118, 1081 HZ Amsterdam, The Netherlands; Telephone: +31 020 4440931, Fax: +31 20 444 3688
Verbal explanation with the presented instruments Below an English translation of the initial verbal explanation with each instrument is presented. If participants had any questions, further explanation was provided. The instruments were shown in Dutch. Paper-and-pencil instruments (Patient Concerns Inventory or Distress Thermometer) ‘There are different ways or methods to keep track of your symptoms, distress, and quality of life. One example would be a paper questionnaire (show Patient Concerns Inventory or Distress Thermometer). This is divided into different topics.’ Oncoquest ‘Oncoquest is a method to keep track of your health and issues you may experience by completing questions on a secured, touch-screen computer at the outpatient clinic (show pictures of Oncoquest). Completing the questions takes about 10 minutes and you could do this prior to a scheduled visit to the doctor, or while you’re waiting. You can complete the questions by tapping on the appropriate answer on the screen.’ Oncokompas ‘Oncokompas is a method to keep track of your health and issues you may experience by completing questions from your own computer at home. This is done with a secured connection, like when you handle your bank affairs online. Completing all questions takes about 30-60 minutes. Based on your answers, you will receive an overview of what your strengths and weaknesses are (show first screenshot), and you can read personalized advice based on your reported symptoms or issues (show second and third screenshot). Also, you will receive suggestions for supportive care options that might fit your needs (show fourth screenshot).
BRAIN TUMOUR CLINIC “PATIENT CONCERNS INVENTORY”
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Please tick any issues that have been a concern for you recently. PRACTICAL Child care Financial benefits Holidays Housing Insurance Recreation Transport or driving FAMILY Dealing with children Dealing with partner Ensuring support for family EMOTIONAL Anger or irritability Fear of tumour coming back Other fear, anxiety or worry Personality changes Sadness, low mood or depression SPIRITUAL Difficulty relating to God Loss of faith Loss of meaning to life
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PHYSICAL Appearance Appetite or eating Bathing or dressing Breathing Changes in urination Concentration Constipation Co-ordination Diarrhoea Epilepsy, or seizures Fatigue, tiredness or low energy Feeling swollen Fever Headache Indigestion Memory Metallic taste in mouth Mobility/getting around Mouth sores Nausea or vomiting Nose dry/congested Pain (apart from headache) Sex or intimacy Skin dry, or itchy Sleep Too Little Too Much Speech Tingling in hands or feet Vision Weakness in arms or legs Weight change
If you ticked any concerns, which one is most important today?
Please turn over>>
If you have specific questions about any of the concerns you identified, here is space to write them down.
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2.
3.
4.
Thankyou. Please take this form with you into the appointment. The team will use it to focus on your concerns today.
Distress thermometer and problem list
Problem list
Date of today: ……. - ……. - ……. (day-month-year)
Second, please indicate by checking yes or no if any of the following has been a problem for you in the past week (including today). Be sure to check YES or NO for each.
First, please circle the number on the thermometer that best describes how much distress you have been experiencing in the past week (including today) physically, emotionally, socially, practically and religiously.
10 = Extreme distress
0 = No distress at all
Yes ! ! ! ! ! ! !
No ! ! ! ! ! ! !
Practical problems child care housing housekeeping transportation work/school/study financial insurance
! ! !
! ! !
Family / social problems dealing with partner dealing with children dealing with friends/family
! ! ! ! ! ! ! ! ! ! !
! ! ! ! ! ! ! ! ! ! !
Emotional problems keeping emotions under control memory self confidence fears depression tension/nervousness loneliness concentration feelings of guilt loss of control dependence on others
Yes ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! O ! ! ! ! !
No ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! !
Physical problems appearance changes in urination constipation diarrhoea eating feeling swollen fever mouth sores nausea nose dry/congested pain sexual skin dry/itchy sleep shortness of breath/breathing nausea speech/talking taste weight change tingling in hands/feet bathing/ dressing daily activities fatigue out of shape/condition muscle strength
Other problems? _________________________________________________ Would you like to talk with someone about your problems? ! yes
! maybe
! no
If yes, with whom?
Source NCCN, USA © CCCNE, the Netherlands
! !
! !
Religious/spiritual concerns meaning of life trust in God / religion
O nurse O dietician O physiotherapist O social worker
O pastoral worker O psychologist O patient association O another, namely………
