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LIFE REGARD INDEX
Life Regard Index. Description: A measure of positive life regard. Format: 28 items divided into 2 subscales: Framework (FR), which measures the ability of the individual to see his/her life within some perspective or context, and to have derived a set of life-goals, a purpose in life or life view from them, and Fulfillment (FU), which measures the degree to which an individual sees himself HOSPITAL ANXIETY AND DEPRESSION SCALE (HADS) Hospital Anxiety and Depression Scale (HADS) Description: The HADS is a screening tool for anxiety and depression in non-psychiatric clinical populations .It is thought to tap into the construct of affect . Format: The scale consists of 14 items (7 each for anxiety and depression).Each item is rated on a four point scale ranging from 0 (not at all) to 3 (very often). GLOBAL ASSESSMENT QUESTION (GAQ) Global Assessment Question (GAQ) Description: A measure of perceived improvements in erectile function and sexual ability . Format: 2 items asking about improvements in erectile function and ability to engage in sexual activity. Scoring: Categorical data can be obtained from this measure. Administration and Burden: Interviewer-administered; Self-administered. Less than 5 minutes. Psychometrics KING’S HEALTH QUESTIONNAIRE (KHQ) King’s Health Questionnaire (KHQ) Description: The KHQ is an assessment of health-related quality of life related to a specific condition (bladder problems) . Format: 21 items about urinary tract symptoms yield scores in 9 domains (general health perception, incontinence impact, role limitations, physical limitations, social limitations, personal relationships, emotions, sleep/energy INFLAMMATORY BOWEL DISEASE QUESTIONNAIRE (IBDQ) Inflammatory Bowel Disease Questionnaire (IBDQ) Description: A quality of life (QoL) questionnaire for patients with inflammatory bowel diseases . Format: 32 questions grouped into four dimensions: bowel, systemic, social, and emotional. Scoring: Scores range from 1 (poorest QoL) to 7 (best QoL). Higher scores indicate better QoL. Administration and Burden: Interviewer-administered; Self ROSENBERG SELF-ESTEEM SCALE (RSES) Rosenberg Self-Esteem Scale (RSES) Description: A standardized scale that rates self-esteem, self-worth, acceptability, and confidence . Format: 10 items Scoring: Items are scored on a 4-point scale ranging from strongly agree to strongly disagree.Scores may range from 0 to 30. Scores between 15 and 25 are considered within normal range; scores below 15 suggest low self-esteem. CONSTANT MURLEY SCALE (CMS) Constant Murley Scale (CMS) Description: A shoulder-specific outcome measure . Format: The CMS is a 100-point scale composed of a number of individual parameters.These parameters define the degree of pain the patient experiences and the ability to perform normally dailyliving tasks.
LIFE SITUATION QUESTIONNAIRE Life Situation Questionnaire - Revised (LSQ-R) Description: A measure of subjective well-being that assesses an individual’s current level of satisfaction with various domains of life. It also requires individuals to rate the degree to which different areas of their lives have caused them problems. The LSQ-R is embedded into a larger survey,the Life Situation
PATIENT REPORTED IMPACT OF SPASTICITY MEASURE (PRISM) Patient Reported Impact of Spasticity Measure (PRISM) Measure: Patient Reported Impact of Spasticity Measure (PRISM) . Description: A health-related (QoL) measure of subjective well-being that assesses the impact of spinal cord injury (SCI)-related spasticity on quality of life (QoL) from the patient’s perspective and has seven sub-scales, which include: ‘Social Avoidance/Anxiety INTERNATIONAL INDEX OF ERECTILE FUNCTION 5 (IIEF-5) International Index of Erectile Function 5 (IIEF-5) Description: An abridged 5-item version of the 15-item International Index of Erectile Function, which is a condition measure of erectile functioning . Format: 5 items. Scoring: Each IIEF-5 item is scored on a 5-point ordinal scale, with lower values representing poorer sexual function. Possible scores for theLIFE REGARD INDEX
Life Regard Index. Description: A measure of positive life regard. Format: 28 items divided into 2 subscales: Framework (FR), which measures the ability of the individual to see his/her life within some perspective or context, and to have derived a set of life-goals, a purpose in life or life view from them, and Fulfillment (FU), which measures the degree to which an individual sees himself HOSPITAL ANXIETY AND DEPRESSION SCALE (HADS) Hospital Anxiety and Depression Scale (HADS) Description: The HADS is a screening tool for anxiety and depression in non-psychiatric clinical populations .It is thought to tap into the construct of affect . Format: The scale consists of 14 items (7 each for anxiety and depression).Each item is rated on a four point scale ranging from 0 (not at all) to 3 (very often). GLOBAL ASSESSMENT QUESTION (GAQ) Global Assessment Question (GAQ) Description: A measure of perceived improvements in erectile function and sexual ability . Format: 2 items asking about improvements in erectile function and ability to engage in sexual activity. Scoring: Categorical data can be obtained from this measure. Administration and Burden: Interviewer-administered; Self-administered. Less than 5 minutes. Psychometrics KING’S HEALTH QUESTIONNAIRE (KHQ) King’s Health Questionnaire (KHQ) Description: The KHQ is an assessment of health-related quality of life related to a specific condition (bladder problems) . Format: 21 items about urinary tract symptoms yield scores in 9 domains (general health perception, incontinence impact, role limitations, physical limitations, social limitations, personal relationships, emotions, sleep/energy INFLAMMATORY BOWEL DISEASE QUESTIONNAIRE (IBDQ) Inflammatory Bowel Disease Questionnaire (IBDQ) Description: A quality of life (QoL) questionnaire for patients with inflammatory bowel diseases . Format: 32 questions grouped into four dimensions: bowel, systemic, social, and emotional. Scoring: Scores range from 1 (poorest QoL) to 7 (best QoL). Higher scores indicate better QoL. Administration and Burden: Interviewer-administered; Self ROSENBERG SELF-ESTEEM SCALE (RSES) Rosenberg Self-Esteem Scale (RSES) Description: A standardized scale that rates self-esteem, self-worth, acceptability, and confidence . Format: 10 items Scoring: Items are scored on a 4-point scale ranging from strongly agree to strongly disagree.Scores may range from 0 to 30. Scores between 15 and 25 are considered within normal range; scores below 15 suggest low self-esteem. CONSTANT MURLEY SCALE (CMS) Constant Murley Scale (CMS) Description: A shoulder-specific outcome measure . Format: The CMS is a 100-point scale composed of a number of individual parameters.These parameters define the degree of pain the patient experiences and the ability to perform normally dailyliving tasks.
LIFE SITUATION QUESTIONNAIRE Life Situation Questionnaire - Revised (LSQ-R) Description: A measure of subjective well-being that assesses an individual’s current level of satisfaction with various domains of life. It also requires individuals to rate the degree to which different areas of their lives have caused them problems. The LSQ-R is embedded into a larger survey,the Life Situation
PATIENT REPORTED IMPACT OF SPASTICITY MEASURE (PRISM) Patient Reported Impact of Spasticity Measure (PRISM) Measure: Patient Reported Impact of Spasticity Measure (PRISM) . Description: A health-related (QoL) measure of subjective well-being that assesses the impact of spinal cord injury (SCI)-related spasticity on quality of life (QoL) from the patient’s perspective and has seven sub-scales, which include: ‘Social Avoidance/AnxietyPARQOL
Executive Summary Maintaining optimal health and well-being after sustaining a spinal cord injury (SCI) can be a challenge. Common secondary health conditions like pressure sores, spasms, chronic pain, and urinary tract infections often negatively affect quality of life (QoL) and social participation (involvement in life situations). Although QoL and participation are frequently researched HOSPITAL ANXIETY AND DEPRESSION SCALE (HADS) Hospital Anxiety and Depression Scale (HADS) Description: The HADS is a screening tool for anxiety and depression in non-psychiatric clinical populations .It is thought to tap into the construct of affect . Format: The scale consists of 14 items (7 each for anxiety and depression).Each item is rated on a four point scale ranging from 0 (not at all) to 3 (very often).LIFE REGARD INDEX
Life Regard Index. Description: A measure of positive life regard. Format: 28 items divided into 2 subscales: Framework (FR), which measures the ability of the individual to see his/her life within some perspective or context, and to have derived a set of life-goals, a purpose in life or life view from them, and Fulfillment (FU), which measures the degree to which an individual sees himself PROFILE OF MOOD STATES (POMS) Profile of Mood States (POMS) Description: A measure of mood states. Format: 65 items measuring 6 mood states: tension, depression, anger, vigour, fatigue, and confusion.Items are rated on a 5-point Likert scale ranging from 0 (not at all) to 4 (extremely). Scoring: Total mood disturbance is calculated by subtracting the Vigor subscale score from the sum of the Tension, Depression, Anger SARNO FUNCTIONAL LIFE SCALE (SFLS) Sarno Functional Life Scale (SFLS) Description: An objective measure that estimates an individual’s ability to participate in all of the basic activities customary to a human being.The five elements comprising the scale include: cognition, activities of daily living (ADL), activities inside the home, outside activities, and socialinteraction.
CARDIFF WOUND IMPACT SCHEDULE (CWIS) Cardiff Wound Impact Schedule (CWIS) Description: A measure designed to assess the impact of pressure ulcers on activities of daily living (ADL). It also has an item evaluating global subjective well-being. Format: Four domains: Quality of Life – 2 items; Well-Being – 7 items, graded on a 5 point scale; Physical Symptoms and Daily Living (Experienced) – 12 items, graded on a 5 point SHORT-FORM HEALTH SURVEY 36 (SF-36) Short-Form Health Survey 36 (SF-36) Description: A generic health status measure (health-related quality of life ) designed to be applied to all health conditions and to assess general health concepts, such as functional status and well-being . Format: 36 items covering eight domains: physical functioning, role limitations due to physical health problems, bodily pain, general health BODY CATHEXIS-SELF CATHEXIS (BCSC) SCALE Body Cathexis-Self Cathexis (BCSC) Scale. Description: A domain specific measure of subjective well-being that assesses the degree of a person’s satisfaction with various parts or processes of the body. Format: 46 items ranked on a five-point scale: 1 = Have strong feelings and wish change could somehow be made 2 = Don’t like butcan put up with
TENESEE SELF-CONCEPT SCALE (TSCS) Tenesee Self-Concept Scale (TSCS) Description: A global measure of self-concept (subjective well-being), where the respondent answers self-descriptive items by means of which an individual portrays what he or she is, does, likes, and feels.As well as providing an overall assessment of self-esteem, the TSCS measures five external aspects of self-concept (moral-ethical, social, personal MULTIDIMENSIONAL SCALE OF PERCEIVED SOCIAL SUPPORT (MSPSS) Multidimensional Scale of Perceived Social Support (MSPSS) Description: A measure of the perceived availability of support. Format: 12 items assessing 3 sources of support: family, friends, and significant other.Items are rated on a 7-point Likert-scale rangingfrom 1
PARQOLABOUT PAR-QOLNEWSCONTACT USACHIEVEMENTSPAR-QOL PROJECTTEAMNEWSLETTERS
Executive Summary Maintaining optimal health and well-being after sustaining a spinal cord injury (SCI) can be a challenge. Common secondary health conditions like pressure sores, spasms, chronic pain, and urinary tract infections often negatively affect quality of life (QoL) and social participation (involvement in life situations). Although QoL and participation are frequently researched HOSPITAL ANXIETY AND DEPRESSION SCALE (HADS) Hospital Anxiety and Depression Scale (HADS) Description: The HADS is a screening tool for anxiety and depression in non-psychiatric clinical populations .It is thought to tap into the construct of affect . Format: The scale consists of 14 items (7 each for anxiety and depression).Each item is rated on a four point scale ranging from 0 (not at all) to 3 (very often). GLOBAL ASSESSMENT QUESTION (GAQ) Global Assessment Question (GAQ) Description: A measure of perceived improvements in erectile function and sexual ability . Format: 2 items asking about improvements in erectile function and ability to engage in sexual activity. Scoring: Categorical data can be obtained from this measure. Administration and Burden: Interviewer-administered; Self-administered. Less than 5 minutes. Psychometrics KING’S HEALTH QUESTIONNAIRE (KHQ) King’s Health Questionnaire (KHQ) Description: The KHQ is an assessment of health-related quality of life related to a specific condition (bladder problems) . Format: 21 items about urinary tract symptoms yield scores in 9 domains (general health perception, incontinence impact, role limitations, physical limitations, social limitations, personal relationships, emotions, sleep/energy ROSENBERG SELF-ESTEEM SCALE (RSES) Rosenberg Self-Esteem Scale (RSES) Description: A standardized scale that rates self-esteem, self-worth, acceptability, and confidence . Format: 10 items Scoring: Items are scored on a 4-point scale ranging from strongly agree to strongly disagree.Scores may range from 0 to 30. Scores between 15 and 25 are considered within normal range; scores below 15 suggest low self-esteem. INTERNATIONAL INDEX OF ERECTILE FUNCTION 5 (IIEF-5) International Index of Erectile Function 5 (IIEF-5) Description: An abridged 5-item version of the 15-item International Index of Erectile Function, which is a condition measure of erectile functioning . Format: 5 items. Scoring: Each IIEF-5 item is scored on a 5-point ordinal scale, with lower values representing poorer sexual function. Possible scores for the INFLAMMATORY BOWEL DISEASE QUESTIONNAIRE (IBDQ) Inflammatory Bowel Disease Questionnaire (IBDQ) Description: A quality of life (QoL) questionnaire for patients with inflammatory bowel diseases . Format: 32 questions grouped into four dimensions: bowel, systemic, social, and emotional. Scoring: Scores range from 1 (poorest QoL) to 7 (best QoL). Higher scores indicate better QoL. Administration and Burden: Interviewer-administered; Self LIFE SITUATION QUESTIONNAIRE Life Situation Questionnaire - Revised (LSQ-R) Description: A measure of subjective well-being that assesses an individual’s current level of satisfaction with various domains of life. It also requires individuals to rate the degree to which different areas of their lives have caused them problems. The LSQ-R is embedded into a larger survey,the Life Situation
CONSTANT MURLEY SCALE (CMS) Constant Murley Scale (CMS) Description: A shoulder-specific outcome measure . Format: The CMS is a 100-point scale composed of a number of individual parameters.These parameters define the degree of pain the patient experiences and the ability to perform normally dailyliving tasks.
PATIENT REPORTED IMPACT OF SPASTICITY MEASURE (PRISM) Patient Reported Impact of Spasticity Measure (PRISM) Measure: Patient Reported Impact of Spasticity Measure (PRISM) . Description: A health-related (QoL) measure of subjective well-being that assesses the impact of spinal cord injury (SCI)-related spasticity on quality of life (QoL) from the patient’s perspective and has seven sub-scales, which include: ‘Social Avoidance/Anxiety PARQOLABOUT PAR-QOLNEWSCONTACT USACHIEVEMENTSPAR-QOL PROJECTTEAMNEWSLETTERS
Executive Summary Maintaining optimal health and well-being after sustaining a spinal cord injury (SCI) can be a challenge. Common secondary health conditions like pressure sores, spasms, chronic pain, and urinary tract infections often negatively affect quality of life (QoL) and social participation (involvement in life situations). Although QoL and participation are frequently researched HOSPITAL ANXIETY AND DEPRESSION SCALE (HADS) Hospital Anxiety and Depression Scale (HADS) Description: The HADS is a screening tool for anxiety and depression in non-psychiatric clinical populations .It is thought to tap into the construct of affect . Format: The scale consists of 14 items (7 each for anxiety and depression).Each item is rated on a four point scale ranging from 0 (not at all) to 3 (very often). GLOBAL ASSESSMENT QUESTION (GAQ) Global Assessment Question (GAQ) Description: A measure of perceived improvements in erectile function and sexual ability . Format: 2 items asking about improvements in erectile function and ability to engage in sexual activity. Scoring: Categorical data can be obtained from this measure. Administration and Burden: Interviewer-administered; Self-administered. Less than 5 minutes. Psychometrics KING’S HEALTH QUESTIONNAIRE (KHQ) King’s Health Questionnaire (KHQ) Description: The KHQ is an assessment of health-related quality of life related to a specific condition (bladder problems) . Format: 21 items about urinary tract symptoms yield scores in 9 domains (general health perception, incontinence impact, role limitations, physical limitations, social limitations, personal relationships, emotions, sleep/energy ROSENBERG SELF-ESTEEM SCALE (RSES) Rosenberg Self-Esteem Scale (RSES) Description: A standardized scale that rates self-esteem, self-worth, acceptability, and confidence . Format: 10 items Scoring: Items are scored on a 4-point scale ranging from strongly agree to strongly disagree.Scores may range from 0 to 30. Scores between 15 and 25 are considered within normal range; scores below 15 suggest low self-esteem. INTERNATIONAL INDEX OF ERECTILE FUNCTION 5 (IIEF-5) International Index of Erectile Function 5 (IIEF-5) Description: An abridged 5-item version of the 15-item International Index of Erectile Function, which is a condition measure of erectile functioning . Format: 5 items. Scoring: Each IIEF-5 item is scored on a 5-point ordinal scale, with lower values representing poorer sexual function. Possible scores for the INFLAMMATORY BOWEL DISEASE QUESTIONNAIRE (IBDQ) Inflammatory Bowel Disease Questionnaire (IBDQ) Description: A quality of life (QoL) questionnaire for patients with inflammatory bowel diseases . Format: 32 questions grouped into four dimensions: bowel, systemic, social, and emotional. Scoring: Scores range from 1 (poorest QoL) to 7 (best QoL). Higher scores indicate better QoL. Administration and Burden: Interviewer-administered; Self LIFE SITUATION QUESTIONNAIRE Life Situation Questionnaire - Revised (LSQ-R) Description: A measure of subjective well-being that assesses an individual’s current level of satisfaction with various domains of life. It also requires individuals to rate the degree to which different areas of their lives have caused them problems. The LSQ-R is embedded into a larger survey,the Life Situation
CONSTANT MURLEY SCALE (CMS) Constant Murley Scale (CMS) Description: A shoulder-specific outcome measure . Format: The CMS is a 100-point scale composed of a number of individual parameters.These parameters define the degree of pain the patient experiences and the ability to perform normally dailyliving tasks.
PATIENT REPORTED IMPACT OF SPASTICITY MEASURE (PRISM) Patient Reported Impact of Spasticity Measure (PRISM) Measure: Patient Reported Impact of Spasticity Measure (PRISM) . Description: A health-related (QoL) measure of subjective well-being that assesses the impact of spinal cord injury (SCI)-related spasticity on quality of life (QoL) from the patient’s perspective and has seven sub-scales, which include: ‘Social Avoidance/AnxietyOUTCOME TOOLS
Outcome Tools The effective prevention and management of secondary health conditions are of paramount importance to persons living long-term with spinal cord injury (SCI) in order to enhance community participation and quality of life (QoL). To achieve this goal, it is critical that we utilize appropriate outcome tools to illustrate their impact. Although accurate INFLAMMATORY BOWEL DISEASE QUESTIONNAIRE (IBDQ) Inflammatory Bowel Disease Questionnaire (IBDQ) Description: A quality of life (QoL) questionnaire for patients with inflammatory bowel diseases . Format: 32 questions grouped into four dimensions: bowel, systemic, social, and emotional. Scoring: Scores range from 1 (poorest QoL) to 7 (best QoL). Higher scores indicate better QoL. Administration and Burden: Interviewer-administered; SelfLIFE REGARD INDEX
Life Regard Index. Description: A measure of positive life regard. Format: 28 items divided into 2 subscales: Framework (FR), which measures the ability of the individual to see his/her life within some perspective or context, and to have derived a set of life-goals, a purpose in life or life view from them, and Fulfillment (FU), which measures the degree to which an individual sees himself SPASTICITY – PARQOL Spasticity Spasticity is typically experienced by individuals with spinal cord injury (SCI) following a period of spinal shock, and, in most cases, these symptoms negatively impact quality of life . There is great variability in definitions of spasticity, but the most commonly cited definition states: ‘Spasticity is a motor disordercharacterized by a
PROFILE OF MOOD STATES (POMS) Profile of Mood States (POMS) Description: A measure of mood states. Format: 65 items measuring 6 mood states: tension, depression, anger, vigour, fatigue, and confusion.Items are rated on a 5-point Likert scale ranging from 0 (not at all) to 4 (extremely). Scoring: Total mood disturbance is calculated by subtracting the Vigor subscale score from the sum of the Tension, Depression, Anger LIFE SITUATION QUESTIONNAIRE Life Situation Questionnaire – Revised (LSQ-R) Description: A measure of subjective well-being that assesses an individual’s current level of satisfaction with various domains of life. It also requires individuals to rate the degree to which different areas of their lives have caused them problems.BLADDER DYSFUNCTION
Affect Balance Scale; Bladder Complications Scale; Craig Handicap Assessment and Reporting Technique (CHART) Ferrans and Powers Quality of Life Index (QLI) SCI-Version CONSTANT MURLEY SCALE (CMS) Constant Murley Scale (CMS) Description: A shoulder-specific outcome measure . Format: The CMS is a 100-point scale composed of a number of individual parameters.These parameters define the degree of pain the patient experiences and the ability to perform normally dailyliving tasks.
SEXUAL DYSFUNCTION
Sexual Dysfunction. Sexuality is an important element of a person’s life, which encompasses both emotional and physical types of intimacy . A spinal cord injury (SCI) will affect a person’s sexual health and this may lead to problems such as a decline in life satisfaction,quality of
SARNO FUNCTIONAL LIFE SCALE (SFLS) Sarno Functional Life Scale (SFLS) Description: An objective measure that estimates an individual’s ability to participate in all of the basic activities customary to a human being.The five elements comprising the scale include: cognition, activities of daily living (ADL), activities inside the home, outside activities, and socialinteraction.
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Home The Par-QoL team 2018-07-25T14:25:59-04:00EXECUTIVE SUMMARY
Maintaining optimal health and well-being after sustaining a spinal cord injury (SCI) can be a challenge.  Common secondary health conditions like pressure sores, spasms, chronic pain, and urinary tract infections often negatively affect quality of life (QoL) and social participation _(involvement in life situations_)_._ Although QoL and participation are frequently researched topics, there is still a lack of consensus on how to define these constructs and how to effectively measure them. THE PARTICIPATION AND QUALITY OF LIFE (PAR-QOL) TOOL-KIT is an educational resource to support SCI clinicians and researchers with the outcome tool selection process. The website provides information about which QoL and participation outcome tools have been used to assess secondary health conditions, and details: 1) whether the tools are sensitive to secondary health condition impact; 2) whether they are psychometrically and/or clinically sound (valid, reliable) for use in the SCI population; and 3) the underlying QoL construct of each measure. By providing this information, we hope the PAR-QoL website will serve to educate SCI professionals about QoL and participation, which will in turn improve clinical practice and research. Funding for this project is provided by the Paralyzed Veterans of America (PVA) Education Foundation, Ontario
Neurotrauma Foundation (ONF),  and the Quebec Rehabilitation Research Network (REPAR).
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