IX. Research Instruments/Resources

This section includes numerous clinical and research tools addressing quality of life, pain, psychosocial assessment, medical staff knowledge and attitudes, brief pain surveys, palliative care and needs assessments from various sources.
  1. Advanced Practice Nurse (APN) Toolkit  
    The APN toolkit website contains a compendium of tools used in APN related research.  The measurement instruments listed on this website have been organized according to the Participatory, Evidence-based, Patient-focused Process, for guiding the development, implementation, and evaluation of Advanced practice nursing (PEPPA) framework. 
  2. Brief Pain Inventory
    The BPI is a brief, simple, and easy to use tool for the assessment of pain in both clinical and research settings.   It was developed by Charles Cleeland, PhD and is available through the Pain Research Group at MD Anderson Cancer Center. The BPI uses simple numeric rating scales from 0 to 10 that are easy to understand and easy to translate into other languages.  It is a well validated instrument to measure pain intensity, functionality and the impact of pain on one's life in the past 24 hours and within the past week.   
          - Short version 
          - Long version 
          - Brief Pain Inventory User Guide 
  3. Brief Pain Surveys  
    This is a collection of 6 brief surveys: Pain Assessment/Behavior Survey; Pain/Gender Survey; Brief Cancer Pain Information Survey; Pain Addiction Survey; Brief Pharmacology Survey; Test Questions. These short surveys developed by Margo McCaffery and Betty Ferrell are intended for practical use in situations such as staff education where limited time and resources are available for data collection or analysis.
  4. Clinical Decision Making Tool - City of Hope, Duarte, CA
    This 14-item survey assesses nurses� clinical decision making regarding pain management.    
  5. Controlling Pain Vignettes - City of Hope, Duarte, CA
    The vignettes for use with health care professionals, published in a series in the journal Nursing, provide case vignettes related to patient characteristics (i.e. age, behavior) and pain control. Options are presented along with the "right choice" and its rationale. Useful as a brief survey to assess staff knowledge and decisions regarding pain.
  6. Edmonton Assessment Tools - Regional Palliative Care Program in Edmonton Alberta, Canada  
    Online tools to measure discomfort and symptom assessment of dying patients.  
  7. End-of-Life Professional Caregiver Survey - Yale School of Nursing
    This is an excellent tool for use to assess staff knowledge about palliative care.  
  8. FACIT Questionnaires
    Functional Assessment of Chronic Illness Therapy (FACIT), 
    manages questionnaires that measure health-related quality of life for people with chronic illnesses. The first questionnaire, The Functional Assessment of Cancer Therapy-General (FACT-G), was developed and validated over 10 years ago, and has been used in hundreds of studies worldwide.  Since then over  40 questionnaires have been developed and translated some of them into over 45 different languages. They have also developed and translated instruments for fatigue, treatment satisfaction, spiritual well-being, HIV disease, multiple sclerosis, and other chronic conditions.  
  9. Family Pain Questionnaire - City of Hope, Duarte, CA
    The Family Pain Questionnaire (FPQ) is a sixteen-item ordinal scale that measures the knowledge and experience of a family caregiver in managing chronic cancer pain. This tool can be used in clinical practice as well as research.
  10. SF Health Surveys
    The surveys are designed for use in clinical practice and research, health policy evaluations, and general population surveys. The SF-36 includes one multi-item scale that assesses eight health concepts. It has been used extensively in QOL research in studying adjustment to various chronic illnesses and it has been translated into over 80 languages.  
  11. Instruments Used in End of Life Care Education, City of Hope, Duarte, CA  
    A collection of instruments currently in use by City of Hope investigators to assess staff knowledge and needs to improve end of life care. Curriculum Survey for Nursing Schools; Clinical Nurse Survey; Home Care/Hospice Agencies; Home Care Nurses and HHAs; Knowledge Assessment for Nurses; Knowledge Assessment for HHA�s; Chart Audit Tool; and a Case Analysis Form.
  12. Knowledge and Attitudes Survey Regarding Pain - City of Hope, Duarte, CA
    An instrument to measure knowledge and attitudes regarding pain in health care professionals. Used extensively by clinical settings for several years, this tool provides descriptive data regarding areas of needed pain education. (see Item "25" below for pediatric version).
  13. M.D. Anderson Symptom Inventory (MDASI) -  MD Anderson Cancer Center, TX
    The MDASI is used for patients with symptoms due to cancer and cancer treatment to assess the severity of multiple symptoms and the impact of symptoms on daily functioning.  
  14. McGill Pain Questionnaire
    The McGill Quality of Life Instrument (MQOL) is a 20-item scale specifically developed to measure quality of life at the end of life. The MQOL was designed to measure quality of life of people at all stages of a life-threatening illness. The MQOL assesses general domains applicable to all patients, incorporates the existential domain, balances physical and non-physical aspects of quality of life, and includes both positive and negative influences on quality of life.
  15. McGill Short-Form Pain Questionnaire
    The McGill Short Form Pain Questionnaire is a patient-reported instrument that employs 16 items plus a single-item global scale, each with a 2-day time frame. There are five domains that include: physical well-being, physical symptoms, psychological, existential, and support. The instrument was designed to be general in nature in order to maintain brevity and to assure applicability to all patients. It has been used in various terminally ill patients.  
  16. Medical Algorithms Project - Medal: Advanced Medical Decisions
    Research their vast collection, covering 45 medical specialties while we are upgrading to include our more than 20,000 authentic algorithms and computational instructions, based on best practices, online or on mobile devices.
  17. Medical Staff Knowledge & Attitudes Pain Survey - Dartmouth-Hitchcock Medical Center, Lebanon, NH  
    46 item instrument used to assess medical staff regarding knowledge and attitudes regarding pain.
  18. Memorial Symptom Assessment Scale (MSAS)
    The MSAS is a 32-item verbal rating scale that measures psychological and physical symptoms with regard to their presence, frequency, severity, and degree of distress associated with them. The MSAS has been shown to be reliable and valid. Additionally, the MSAS assesses both physical and emotional symptoms.  Short form MSAS-SF.
  19. National Palliative Care Research Center (NPCRC)
    The NPCRC is committed to stimulating, developing, and funding research directed at improving care for seriously ill patients and their families.
    - Measurement and Evaluation Tools - Pain and Symptom Management
  20. Needs at the End-of-Life Screening Tool (NEST) - Buehler Center on Aging
    NEST is a comprehensive assessment and outcome measures instrument.
  21. Pain Audit Tools - City of Hope, Duarte, CA
    These tools have been used extensively in pain/QA efforts. Includes pain chart audit instrument, a version for surgical pain, and a patient interview tool. (Also see related articles under Pain Assessment Tools).
  22. Patient Pain Questionnaire - City of Hope, Duarte, CA
    The Patient Pain Questionnaire (PPQ) is a sixteen-item ordinal scale that measures the knowledge and experience of a patient in managing chronic cancer pain. This tool can be useful in clinical practice as well as for research.
  23. Patient-Reported Outcome and Quality of Life Instruments Database (PROQOLID).
    ProQolid describes more than 646 Patient-Reported Outcome instruments in a structured format and is now available in two levels.  The first level is free of charge and contains categories of basic useful information of these instruments.  The second level, which provides significantly more information about the instruments, also includes review copies of over 500 original instruments, 170 user manuals and 1010 translations, most in PDF format.  It is restricted to annual subscribers.  ProQolid is updated regularly in close collaboration with the instruments� authors with 40 new instruments added in 2008.   
  24. Pediatric Nurses�Knowledge and Attitudes Survey Manworren and Shriners Hospitals for Children 
    Modified Pediatric Nurses Knowledge and Attitudes Survey (PNKAS) regarding pediatric pain in burns, orthopedics and spinal cord injuries.  Answer key also provided.
  25. Promoting Excellence in End of Life Care
    This website includes validated tools for clinical assessment and research in palliative care. 
  26. Psychosocial Pain Assessment Form - City of Hope, Duarte, CA   Developed by Shirley Otis-Green, MSW, LCSW.

    This 8-page assessment and guided interview form measures the impact of pain on five domains; economics, social support, activities of daily living, emotional problems, and coping behaviors as perceived by the interviewer, patient and significant other.

    - Psychosocial Pain Assessment Forms in
      Spanish (for adults and
           -Formulario de Analisis Psicosocial del
    Para Adultos
           -Formulario de Analisis Psicosocial del
            Dolor Para Ninos y Adolescentes
  27. Quality of Life Instruments - City of Hope, Duarte, CA   
    - Bone Marrow Transplant Survivors is an       
      84-item tool specific for use in BMT.

    Breast Cancer Patient Version is a
      46-item tool specific for use in Breast

    Ovarian Cancer Patient Version is a
      45-item tool specific for use in Ovarian
      Cancer.  Also includes Spanish version of   
      the instrument.

    Patient/Cancer Survivor Version is a
      41-item ordinal scale that measures
      quality of life through physical, 
    psychological,  social, and spiritual   domains. This tool has been used
      extensively in pain and cancer
      survivorship research. Also includes
      Spanish version of the instrument.     

    - Quality Care at the End of Life Survey -   
    This survey was designed based on   
      the National Consensus Project for
      Quality Palliative Care Guidelines and 
      was developed and used at the City of
      Hope as a tool for assessing quality care.
      Users are invited to adapt and use it in
      their own institutions to assess the
      quality of care provided and to measure
      the institution's performance in
      comparison with national guidelines. 

    Quality of Life Family Version is a
      37-item instrument that measures QOL of
      a family member caring for a patient with
      cancer. Also includes Spanish version of

    - Quality of Life for Patients with an
      Ostomy is a 47-item tool specific for use
      in Patients with an Ostomy 

    - Staff Survey on Ostomy Care a 32-item
      tool specific for staff          

    Thyroid Version is a 34-item tool specific  
      for use in Thyroid Cancer          
  28. RN Needs Assessment: Pain Management - U. of Wisconsin Hospitals & Clinics, Madison, WI   
    This two-page survey assists in planning continuing education programs in pain management for nurses.
  29. Rehabilitation Professionals� Knowledge and Attitudes Survey Regarding Pain ï¿½ Boston School of Occupational Therapy, Boston, MA
    This instrument was developed as an inter-disciplinary tool to assess knowledge and attitudes regarding pain in rehabilitation professionals. This tool was developed using the OT/PT IASP Pain Curriculum in conjunction with 6 clinical experts.
  30. Survivorship Needs Assessment Tools

    Survivorship Care Summary/Plan  
     Cancer Treatment Plan & Summary 
    -  American Society of Clinical Oncology
     Journey Forward Survivorship Care Plan
     Livestrong Care Plan - Penn Medicines
     Breast Cancer Survivorship Care Plan  
    - NCI Community Cancer Centers Program 

    Survivorship Needs Assessments  
     Cancer Survivors Survey of Needs - Mayo
       Clinic Cancer Center
     Survivor Needs Assessment (English) - St.
       Luke's Hospital and Health Network
     Survivor Needs Assessment (Spanish) - St.
       Luke's Hospital and Health Network
     Survivor Assessment Tool (Patient) -
       University of Tennessee Medical Center
       Cancer Institute
     Survivor Assessment Tool (Physician) -
       University of Tennessee Medical Center
       Cancer Institute
    Pearlman-Mayo Survey of Needs Pearlman
       Cancer Center

  31. Toolkit of Instruments to Measure End of Life Care (TIME).
    This is an extensive website, funded by the Robert Wood Johnson Foundation, and developed and maintained by Joan Teno, MD, MS at Brown University. It includes an Executive Summary reporting the status and need of instruments in end of life care along with listings, links, and access to various instruments measuring various aspects of EOL care. Slide presentations, new instruments and old draft instruments are also available on the website. Instrument sections are divided as follows: Quality of Life, Pain and Other Symptoms, Emotional and Cognitive Symptoms, Functional Status,  Survival Time and Aggressive Care, Advance Care Planning, Continuity of Care, Spirituality, Grief and Bereavement, Caregiver Well-being, and Patient Centered Reports and Rankings (e.g., satisfaction) with Quality of Care.  
  32. WHO (Five) Well-Being Index ï¿½ Psychiatric Research Unit, WHO Collaborating Centre for Mental Health, Frederiksborg General Hospital, Denmark  (In 28 languages)


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