Click on an assessment tool for more information.
The CAGE Questionnaire is a reliable, easily administered screening tool that can aide
in assessment and management of problem alcohol use. The CAGE Questionnaire was developed
in 1970 by Dr. John A. Ewing as a tool for identifying the hidden alcoholic.
For more information and guidelines
For access to the CAGE Questionnaire
Ewing, JA, Rouse, BA. Identifying the hidden alcoholic.
In: Proceedings of the 29 the International Congress on Alcohol and Drug Dependence, February 3, 1970, Sydney, Australia.
Ewing, JA. Detecting Alcoholism: the CAGE Questionnaire.
Journal of the American Medical Association 1984; Vol. 252, No. 14, pp.19051907.
Constipation is highly prevalent among cancer patients. Malnutrition, poor Mobility,
decrease oral intake, autonomic failure, and opioid analgesics are all causes of severe
constipation. Unfortunately, the problem is often very poorly assessed. Additional methods,
other than a history and examination, are occasionally required to assist in adequately assessing
the extent of constipation.
The constipation score is one such tool. It consists of a plain, supine xray of the abdomen which is then divided into four quadrants. The four quadrants being representative of the ascending, traverse, descending and rectosigmoid colon segments respectively. Each quadrant is assessed for the amount of stool present and is scored from 03; 0 being the absence of stool and 3 being complete stool impaction. The scores for each quadrant are totaled. The maximum score being 12 out of 12. A score of 7 or more indicates a more aggressive constipation management is necessary.
ECS-CP: Edmonton Classification System for Cancer Pain
The Edmonton Classification System for Cancer Pain (ECS-CP) was developed as a revised version
of the Edmonton Staging System (ESS) and was renamed to reflect the intended use for cancer pain
classification as a standardized assessment aid to guide clinical management.
Quick User Guide
Fainsinger, R., Nekolaichuk, C., Lawlor, P., Neumann, C., Hanson, J., & Vigano, A. A multicentre validation study of the Revised Edmonton Staging System for classifying cancer pain in advanced cancer patients. Journal of Pain and Symptom Management 2005; 29(3), 224-237.
Nekolaichuk C, Fainsinger R, Lawlor P. A validation study of a pain classification system for advanced cancer patients using content experts: The Edmonton classification system for cancer pain. Palliative Medicine 2005; 19(6):466-476.
Fainsinger RL, Nekolaichuk CL. A “TNM” classification system for cancer pain: The Edmonton classification system for Cancer pain (ECS-CP). Supportive Care in Cancer 2008 16(6):547-555
Fainsinger RL, Nekolaichuk CL. Cancer pain assessment – Can we predict the need for specialist input? European J of Cancer 2008; 44(8):1072-1077.
Fainsinger RL, Fairchild A, Nekolaichuk C, Lawlor P, Lowe S, Hanson J. Is pain intensity a predictor of the complexity of cancer pain management? J of Clinical Oncology 2009; 27(4):585-590.
Knudsen AK, Aass N, Fainsinger R, et al. Classification of pain in cancer patients – a systematic literature review. Palliative Medicine 2009; 23(4):295-308
Fainsinger RL, Nekolaichuk C, Lawlor P, et al. An International Multicentre Validation Study of a Pain Classification System for Cancer Patients. Euro J of Cancer 2010;46(16):2865-2866.
ESAS-r: Edmonton Symptom Assessment System Revised
The revised Edmonton Symptom Assessment System Revised (ESAS-r)(1) replaces the ESAS (2).
The ESAS-r is freely available for use, with appropriate acknowledgement of its source.
To access a copy of the ESAS-r: ESAS-r.pdf
To access a copy of the French version ESAS-r: French version ESAS-r.pdf
To access a copy of the ESAS-r: Renal: ESAS-r: Renal.pdf
To access a copy of the ESAS-r graph: ESAS-r Graph.pdf
To access a copy of the ESAS-r guidelines: ESAS-r Guidelines.pdf
To access ESAS language Translations click here.
1.Watanabe SM, Nekolaichuk C, Beaumont C, Johnson L, Myers J, Strasser F. A multi-centre comparison of two numerical versions of the Edmonton Symptom Assessment System in palliative care patients J Pain Symptom Manage 2011; 41:456-468.
2. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991; 7:6-9.
FAMCARE / FAMCARE-2
What is FAMCARE / FAMCARE-2?
The FAMCARE Scale is used to measure family satisfaction with care of patients with advanced cancer. The tool was originally developed for use on inpatient units, measuring different areas of care such as availability of care, physical patient care, psychosocial care and information giving. The original scale is a “20 item Likert-type scale measuring the degree to which family members are content with the health care provider behaviors directed toward the patient and themselves” (Kristjanson, 1993, p. 696). The FAMCARE Scale can be given to family members while a patient is receiving palliative care or at some point after a patient’s death. Validity evidence for the tool has been gathered in a number of different settings, including inpatient units, outpatient cancer clinics and home care. It is used in such places as North America, Australia and Europe.
There are currently two main versions of the FAMCARE Scale: FAMCARE and FAMCARE-2. FAMCARE has 20 questions, whereas FAMCARE-2 has 17 questions (see Appendix A). The FAMCARE-2 was developed for use in diverse palliative care settings, including acute care, hospice and home care, with both advanced cancer and non-cancer populations.
The FAMCARE-2 is shorter and more concise than the FAMCARE. FAMCARE-2 refers more to a team approach to palliative care, rather than focusing on doctors (primarily) and nurses. FAMCARE-2 makes reference to more symptoms than pain alone and offers more response options. The FAMCARE was specifically developed for care of patients with advanced cancer, while the FAMCARE-2 was extended for use in palliative care settings. Further validity evidence is needed for the use of either tool in specific palliative conditions, such as end stage organ failure and neurodegenerative diseases.
For the FAMCARE-2, “items now refer to services delivered by palliative care teams rather than a doctor or a nurse, and items refer to symptom management rather than pain management alone. Four of the original items that refer to care by a doctor or a nurse were combined into two, and three other questions were added: family responses about their emotional wellbeing; access to practical care assistance; and an ability to comment on their perceptions about the way the care team attended to the patient’s need for dignity. A new response option was also added for all 17 questions in the FAMCARE-2 version: ‘Not relevant to my situation’” (Aoun et al., 2010, p. 675).
There are other versions available as well:
- FAMCARE-6 which was developed as a “short instrument suitable for computerized administration in the clinical setting” (Carter, 2011, p. 565) (see Appendix A)
- FAMCARE-C19 which omitted the item “time required to make a diagnosis,” as “Ringdal and colleagues found this item to be poorly associated with the other FAMCARE items in their validation study” (Lo, Burman, Hales, et al, 2009, p. 3184)
- other adapted scales for family members (Fernandes et al., 2010).
There have also been versions created for the patients:
- FAMCARE-P13 (Lo, Burman, Hales, et al, 2009)
- FAMCARE-P16 (Lo, Burman, Rodin, et al, 2009)
- an unnamed version (Follwell et al., 2009)
FAMCARE is available in English, Turkish (Can et al., 2011), and Marathi (Duraisamy, unpublished). FAMCARE-2 is available in English and Swedish (Klarare, unpublished). A formal translation process (e.g. forward and back translation) was used for these translations. Translations into German, Swedish, Dutch (Aoun, personal communication) and Arabic (Klarare, personal communication) are currently in progress. The availability of translated versions allows the scales to be used in different places around the world.
How to Use
How to Administer
The FAMCARE and FAMCARE-2 tools were originally developed for administration to family members while a patient received palliative care services. However, either tool can be administered to family caregivers while the patient is still alive or after the patient is deceased. Family members can complete either tool in an interview setting (Hwang et al., 2003, p. 321) or independently (Carter et al., 2011, p. 567). Many scales such as the FAMCARE are sent in the mail and returned by the family caregiver once completed (Ringdal et al., 2002, p. 55). Informal training can be given to staff on how to administer the scale.
How to Interpret
Each FAMCARE/FAMCARE-2 item is a five-point Likert-scale with the following responses: very satisfied, satisfied, undecided, dissatisfied and very dissatisfied. Family caregivers may decide that a question is not applicable and/or they may choose not to answer some questions. In the FAMCARE-2, family members can select an additional option, “not relevant to my situation.” The formal scoring system of the FAMCARE/FAMCARE-2 can be either using percent (satisfied or dissatisfied) or the mean score for each item depending how you are summarizing the information.
How to Report
Reporting of the FAMCARE/FAMCARE-2 helps with care planning, care evaluation, and multi- and inter-disciplinary team work. Follow up with family caregivers who provide contact information aids in future patient care. Accurate reporting in a format that is accessible and clear is, therefore, important.
There are some general principles that aid reporting of the FAMCARE/FAMCARE-2 scale to team members, such as:
- Avoiding the use of jargon
- Reporting back promptly
- Reporting briefly and accurately
- Being able to describe concrete examples of how reported information is influencing patient care as determined by family caregivers (when administered while a patient is still alive) and how information can be used to improve future care (when administered after a patient’s death).
Different strategies can be used to help report the FAMCARE/FAMCARE-2 responses in a meaningful way to different audiences. This may involve using Excel databases visually depicting responses that have been collected. For clinical reporting in team meetings, it is useful to explain when the FAMCARE/FAMCARE-2 data were collected, any changes that have been noticed and the meaning of these changes to future patient care. Establishing regular FAMCARE/FAMCARE-2 review dates within clinical meetings can be helpful.
For quality assurance purposes, a summary of FAMCARE/FAMCARE-2 responses from multiple family caregivers can be reported. Personal identifiers are removed at the point of data entry and before reports are generated.
For research purposes, FAMCARE/FAMCARE-2 findings are presented at an aggregate level, removing personal identifiers, such as family caregiver names. Findings are published for wide dissemination.
How to Implement
Clinicians are generally willing to use the FAMCARE/FAMCARE-2. However, there can be barriers to implementation or wider and sustained use. Implementation can be aided by:
- maintenance of confidentiality (of personal identifiers)
- aggregate reporting
- good communication on reasons the tool is useful
- a proactive approach that informs all team members about the implementation and rationale for use of the tool
- ensuring that the FAMCARE/FAMCARE-2 adds value to the work of individuals within the organization (for example, sharing how the FAMCARE/FAMCARE-2 contributes to future patient care)
- providing evidence-based recommendations and scientific papers that support why the tool should be implemented
There is no universal consensus regarding the best time frame to distribute the FAMCARE/FAMCARE-2 to family members after a patient’s death. In a recent literature review of family caregiver satisfaction tools (Beaumont & Nekolaichuk, unpublished), the minimum time frame was approximately three months (mean = 3.504 months; median = 3 months), with a minimum range of one to 10 months
- FAMCARE/FAMCARE-2 Guidelines (full-outline) Crystal Beaumont BSc, Cheryl Nekolaichuck PhD, RPsych
- FAMCARE Quick-User Guide
- FAMCARE-2 Quick-User Guide
- FAMCARE SURVEY ONLY
- FAMCARE-2 SURVEY ONLY
Frequently Asked Questions
1. How and when is the main family caregiver for the patient identified?
There may be several ways to identify the main family caregiver, such as the “primary person responsible for the care of the patient” (Can et al., 2011, p. 1321), the closest family member (Ringdal et al., 2002, p. 54) or “the individual who is most involved in or affected by the patient’s illness” (Hwang et al., 2003, p.320). The following is an example of a comprehensive definition: “the individual identified by the patient as the person most involved in the care of the patient. The relationship with the patient could be biological, legal, or functional” (Medigovich et al., 1999, p. 50).
If the FAMCARE/FAMCARE-2 is administered before a patient’s death, then the patient can identify the family caregiver. Some patients may wish to identify several caregivers.
If the FAMCARE/FAMCARE-2 is administered after a patient’s death, then the staff members might identify the family caregivers, based on their interactions with families prior to the patient’s death.
In the EZPCP, family caregivers may be identified after a patient’s death from the monthly bereavement lists that are generated by each site (e.g. TPCU). Family caregivers may also be identified at the time of a patient’s admission to a palliative care service (e.g. Hospice Palliative Care Unit, Edmonton General Hospital).
2. How many family caregivers are contacted after the patient is deceased to complete the FAMCARE/FACMARE-2 survey? Will there be more than one respondent for each patient?
Your team may choose to contact several family caregivers in hopes of receiving at least one response back. This will have to be taken into account and noted when gathering response rates for a report.
3. How are family caregivers contacted about the FAMCARE/FAMCARE-2 scale?
At a reasonable time after the patient’s death, the FAMCARE/FAMCARE-2 may be mailed to the main family caregiver(s). Sometimes, teams choose to send the FAMCARE/FAMCARE-2 form with a bereavement package. Teams may also choose to obtain consent from family members before a patient’s death (Ringdal et al., 2003, p. 168) or follow up with a phone call before they mail out the FAMCARE/FAMCARE-2 to family members.
4. How often are assessments done before death?
FAMCARE/FAMCARE-2 surveys can be completed while the patient is still alive. Assessments can be given, for example, every second month until death (Ringdal et al., 2003, p. 168).
5. What is the best way to administer the FAMCARE/FAMCARE-2?
There are a variety of ways to administer the FAMCARE/FAMCARE-2, such as face-to-face interviews (Hwang et al., 2003, p. 321), phone interviews (Rodriguez et al., 2010, p. 169), mail/ self-report (Ringdal et al., 2002, p. 55), and computerized surveys (Carter et al., 2011, p. 565). Another option would be to develop and administer the survey online.
6. What demographics are potentially collected with the FAMCARE/FAMCARE-2?
In a recent literature review of the family caregiver satisfaction tools (Beaumont & Nekolaichuk, unpublished), the following demographics had been collected with the FAMCARE/FAMCARE-2:
- • Age
- • Gender
- • Marital status
- • Ethnicity
- • Educational level
- • Occupation
- • Employment status
- • Income
- • Relationship to the patient
- • Religious affiliation
- • Number of dependents at home
- • Age
- • Gender
- • Diagnosis
- • Religious affiliation
A summary of the demographics and corresponding references appear in the Appendix B (see Tables 1a and 1b).
These demographics are not currently being collected in the EZPCP, but other programs have collected them.
7. What are the relationships between family caregiver satisfaction and patient demographics?
Family caregiver satisfaction responses have been associated with specific patient demographics, such as age, gender and education. The elderly tended to record greater levels of satisfaction (Can et al., 2011, p. 1328), women were more satisfied than men (Ringdal et al., 2002, p. 58) and those with less education were more satisfied than those with more education (Ringdal et al., 2002, p. 58). See Tables 2a and 2b in Appendix B for other demographic relationships and references.
8. What other types of family satisfaction tools have been used in palliative care?
Other family caregiver satisfaction tools have been used to capture family member satisfaction with palliative care. Some of these tools are:
- • Satisfaction Scale for Family Members Receiving Inpatient Palliative Care (Sat-Fam-IPC; Morita & Chihara, 2002)
- • Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C; Shin et al., 2011)
- • Family Inventory of Needs (FIN; Kristjanson et al., 1995)
- • Problems and Needs in Palliative Care (PNPC-sv; Osse et al., 2007)
- • CANHELP questionnaire (Heyland et al., 2010)
- • Views of Informal Carers – Evaluation of Services (VOICES; Addington-Hall et al., 1998).
9. Does clinical practice have to change to use the FAMCARE/FAMCARE-2?
No, clinical practice does not have to change in order to use the FAMCARE/FAMCARE-2. The tool can be incorporated into clinical practice to help focus on issues relevant to family satisfaction with service of advanced cancer patients.
10. How do I know if a family caregiver responds to an item “undecided” if s/he is actually undecided or the question was not applicable to their situation?
For the FAMCARE tool, you will not be able to tell if the response is “undecided” or “not applicable,” unless further information is acquired or if there are comments from the family caregiver. If the family caregiver has provided contact information, then you could contact the individual to clarify these items.
For the FAMCARE-2, there is an additional option of “not relevant to my situation”.
11. What do I do if the patient was only in the place of care for a short while and not all questions are applicable?
Please note in your report that some of the patients only stayed a short duration. Any comments made can be analyzed to determine any similarities and differences between the patients who stayed a short time compared with the patients who stayed a longer time (only applicable for those patients who can be identified, but most of the time this is not possible).
12. How do I go about following up a family caregiver’s negative response on the FAMCARE/FAMCARE-2?
Family caregivers with negative responses or serious concerns on the FAMCARE/FAMCARE- 2 form should be contacted if their contact information is available. Try to find out what went wrong and at the next team meeting (which varies from site to site but may be monthly, quarterly, etc.) bring it forth in discussion to create a possibility for change to occur.
13. How do I communicate the importance of FAMCARE/FAMCARE-2 to family caregivers and staff?
Let staff and family members know that completing the FAMCARE/FAMCARE-2 survey may improve the care given to future patients. The feedback will be used to advance services and support. Through the tool, the organization can obtain information on new developments, priorities and requirements, and help target resources on issues of concern. The systematic use of a family caregiver satisfaction tool demonstrates to staff and family members that family members’ opinions are important. The survey also provides the opportunity for family members to share their experiences, whether satisfactory or unsatisfactory.
14. What publications are available on the FAMCARE/FAMCARE-2?
Please see the references at the end of these guidelines and the tables in Appendix B. This list provides a summary of key publications, but is not an exhaustive list.
15. Are there any copyright issues to be aware of?
The FAMCARE can be used freely and can be found on the internet. The FAMCARE-2 can be used with the appropriate acknowledgement of the instrument developers and reference citation (Aoun et al., 2010). As a courtesy, you can contact Dr. Samar Aoun at S.Aoun@curtin.edu.au to inform her that the tool will be used at a specific site.
MMSE: Mini Mental State Examination
The MiniMental State Examination (MMSE) 1 is a widely used, well validated
screening tool for cognitive impairment. It briefly measures orientation to time and place,
immediate recall, short term verbal memory, calculation, language, and construct ability.
For Instructions on use of the MMSE: Administration of the MMSE.pdf
1 Folstein MF, Folstein S, McHugh PR: “Minimental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research 1975; 12: 189198.
2 Crum RM, Anthony JC, Bassett SS, Folstein MF: Population based norms for the Mini Mental State Examination by age and educational level. Journal of the American Medical Association 1993; 269: 23862391.
Morphine Equivalent Daily Dose
The Morphine Equivalent Daily Dose (MEDD) is used to translate the dose and route of
each of the opioids the patient has received over the last 24 hours to a parenteral morphine equivalent
using a standard conversion table.
For instructions and access to the conversion table: Instructions MEDD.pdf
Bruera E, Lawlor P, Watanabe S, Turner K, Hanson J. The effects of opioid rotation (OR), dose ratio (DR) on pain control and cognition in patients (P) with cancer pain. Presented at the A.S.C.O. meeting in Denver, CO May 20, 1997. Proceedings of ASCO. 1997; 16(212):62a
Charrois T, Lindsay MA, Bruera E. Utilizing a morphine equivalent daily dose for comparison of opioid use in two palliative care units in Canada. Presented at the 12th International Congress on Care of the Terminally Ill, Montreal, PQ September 1317, 1998. J Palliat Care 1998; 14(3):117
Palliative Care Pathway
Palliative Care Pathway
- * Palliative Care Pathway for 8 hour shifts
- * Palliative Care Pathway for 12 hour shifts
- * Family Information Sheet
- * Palliative Care Pathway Staff Guidelines
- * Palliative Care Pathway List of Hospice Palliative Care Education Resources
PPS: Palliative Performance Scale
The Palliative Performance Scale (PPS), now version 2, is a tool for measurement of
performance status in palliative care. The PPS (version 2) allows common language
about performance status that is more relevant in palliative care than the Karnofsky
Performance scale from which it is based.
For more information and instructions on the PPS: Palliative Performance Scale version 2.pdf
The Palliative Performance Scale version 2 (PPSv2) tool is copyright to Victoria Hospice Society