Edmonton Symptom Assessment Scale-Parkinson Disease
(ESAS-PD)66Miyasaki J Long J Mancini D et al.Palliative care for advanced Parkinson disease: an interdisciplinary clinic and new scale, the ESAS-PD.,67The Edmonton Symptom Assessment System 25 Years Later: Past, Present, and Future Developments.Profile score
Specific measure
-14-items rated on 11-point scale
-Score range 0-140;
0 indicates no symptomsPain, fatigue, nausea, anorexia, depression, anxiety, dyspnea, drowsiness, well-being, stiffness, constipation, confusion, dysphagia.
∙ Symptomatic oncology patients receiving palliative careESAS
+
ESAS-PD
–ESAS
+
ESAS-PD
∙ Responsive to physical symptom changes resulting from medical treatmentEuropean Quality of Life Five Dimensions – Three Levels
(EQ-5D-3L)44Gruenewald DA Higginson IJ Vivat B Edmonds P Burman RE. Quality of life measures for the palliative care of people severely affected by multiple sclerosis: A systematic review.,47Johnson JA Coons SJ Ergo A Szava-Kovats G. Valuation of EuroQOL (EQ-5D) health states in an adult US sample.Index score
Generic measure
-5-items rated at 3 levels and a visual analog scale rated 0-100; 0 indicates worse possible health statusMobility, self-care, usual activities, pain/discomfort, mood, general health status
∙ General population+∙ Moderately sensitive to change in MS patients with median EDSS 5.5European Quality of Life Five Dimensions – Five Levels
(EQ-5D-5L)48Janssen MF Pickard AS Golicki D et al.Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: A multi-country study.Single indicator
Generic measure
-5-items rated at 5-levels and a visual analog scale rated 0-100; 0 indicating worse possible health statusMobility, self-care, usual activities, pain/discomfort, depression/anxiety, general health status
∙ General population++FAMCARE-P1668Lo C Burman D Rodin G Zimmermann C. Measuring patient satisfaction in oncology palliative cancer care: psychometric properties of the FAMCARE-patient scale.Index score
Generic measure
-16-items rated on 5-point scale
-Score range 16-80; higher scores indicate higher satisfaction with palliative careSatisfaction with information-giving, care availability, physical and psychological care
Oncology patients receiving palliative care+?Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being
(FACIT-SP-12)69Peterman AH Fitchett G Brady MJ Hernandez L Cella D. Measuring spiritual well-being in people with cancer: The Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being scale (FACIT-Sp).,70Canada AL Murphy PE Fitchett G Peterman AH Schover LR. A 3-factor model for the FACIT-Sp.Index score
General measure
-12-items rated on 5-point scale
-Score range 0-48; 0 indicating low spiritual well-beingSpiritual well-being, meaning, peace, faith
Oncology patients+?Functional Independence Measure
(FIM)71Kidd D Stewart G Baldry J et al.The Functional Independence Measure: a comparative validity and reliability study.,72Use of the functional independence measure for outcomes measurement in acute inpatient rehabilitation.Index score
Specific measure
-18-items rated on 7-point scale
-2 subscales (motor function and cognitive function) each scored 0-100; higher scores indicate higher functionDisability in motor and cognitive functions including self-care, mobility, and communication.
Patients receiving neurorehabilitation++
Responsiveness to change limited by scoring guidelinesHospital Anxiety and Depression Scale (HADS)73The Hospital Anxiety and Depression Scale.,74Hinz A Zweynert U Kittel J Igl W Schwarz R. [Measurement of change with the Hospital Anxiety and Depression Scale (HADS): sensitivity and reliability of change].Profile score
Generic measure
-Two 7-item subscales
-Subscale score range 0-21; 0 indicating little to no likelihood for depression or anxiety respectively.Symptoms of depression and anxiety
Adults 16-65 seeking- medical attention in a general outpatient clinic+Oncology and cardiac populations +Integrated Palliative Outcome Scale- Neuro (IPOS-Neuro)41Gao W Crosby V Wilcock A et al.Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions.,42Wilson R Hepgul N Saha RA Higginson IJ Gao W. Symptom dimensions in people affected by long-term neurological conditions: a factor analysis of a patient-centred palliative care outcome symptom scale.Profile score
Specific measure
-42 items rated on 5-point scale
-Subscales: IPOS Neuro 8; IPOS Neuro-S8; IPOS Neuro-S24
-Score range 0-168; higher scores indicate more symptom impact.IPOS Neuro 8: Psychological and spiritual well-being, information needs, practical issues
IPOS Neuro-S8: Pain, shortness of breath, nausea, vomiting, constipation, mouth problems, spasms, difficulty sleeping)
IPOS Neuro S24: 24 physical symptoms (IPOS Neuro-S8 symptoms plus 16 additional)
∙ People living with MS, MDIPOS-Neuro
?
IPOS Neuro S8
∙ Partially validated
IPOS Neuro S24
∙ Partially validated using data from Gao et al/Hepgul et alIPOS-Neuro
?
IPOS-Neuro-S8
?
IPOS Neuro S24
?Multiple Sclerosis Impact Scale
(MSIS-29)44Gruenewald DA Higginson IJ Vivat B Edmonds P Burman RE. Quality of life measures for the palliative care of people severely affected by multiple sclerosis: A systematic review.,45Hobart JC Riazi A Lamping DL Fitzpatrick R Thompson AJ. Improving the evaluation of therapeutic interventions in multiple sclerosis: Development of a patient-based measure of outcome.Index Score
Specific measure
-29-items
- Physical impact scale score range 20-100; 100 indicating greater impact.
-Psychological impact scale score range 9-45; 45 indicating greater impact.Physical health (symptoms and function) and psychological health (mood, role limitations, autonomy)++Palliative Outcome Scale
(POS)40Development and validation of a core outcome measure for palliative care: The palliative care outcome scale.Profile score
Specific measure
-10-items rated on 5-point scale
-Score range 0-40; 0 indicating no needsPain, non-pain symptom, patient and caregiver anxiety, financial concerns, psychological, spiritual and informational needs
∙ Advanced cancer patients receiving hospice or palliative care∙ Partially validated∙ LimitedPalliative Outcome Scale-Symptom List Multiple Sclerosis (POS-S-MS)43A psychometric validation of two brief measures to assess palliative need in patients severely affected by multiple sclerosis.Profile score
Specific measure
-18-items rated on 5-point scale
-Score range 0-72, lower scores indicating lower symptom burden.Pain, spasms, fatigue, dyspnea, nausea, vomiting, poor appetite, dysphagia, mouth problems, drowsiness, difficulty sleeping, constipation, bowel and bladder control, pressure sores, arm and leg function, difficulty communicating.+
∙ Not validated prior to use in Higginson et al; 2013 validation study used data from 46 patients in Higginson et al?Parkinson's Disease Questionnaire
(PDQ-39)39Martinez-Martin P Jeukens-Visser M Lyons KE et al.Health-related quality-of-life scales in Parkinson's disease: Critique and recommendations.,56Holden SK Koljack CE Prizer LP Sillau SH Miyasaki JM Kluger BM. Measuring quality of life in palliative care for Parkinson's disease: A clinimetric comparison.,62Peto V Jenkinson C Fitzpatrick R Greenhall R. The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease.,64Marinus J Ramaker C van Hilten JJ Stiggelbout AM. Health related quality of life in Parkinson's disease: A systematic review of disease specific instruments.,75Quality of life and Parkinson's disease: Translation and validation of the US Parkinson's Disease Questionnaire (PDQ-39).,76Schrag A Spottke A Quinn NP Dodel R. Comparative responsiveness of Parkinson's disease scales to change over time.Profile score
Specific measure
-39-items rated on 5-point scale, grouped into 8 subscales
-Score range 0-100; 0 indicating better QOLMobility, activities of daily living, emotional well-being, stigma, social support, cognition, communication, bodily discomfort+∙ Responsiveness to change establishedQuality of Life in Alzheimer's Disease
(QOL-AD)38Thorgrimsen L Selwood A Spector A et al.Whose Quality of Life Is It Anyway? The Validity and Reliability of the Quality of Life-Alzheimer's Disease (QoL-AD) Scale.,39Martinez-Martin P Jeukens-Visser M Lyons KE et al.Health-related quality-of-life scales in Parkinson's disease: Critique and recommendations.,56Holden SK Koljack CE Prizer LP Sillau SH Miyasaki JM Kluger BM. Measuring quality of life in palliative care for Parkinson's disease: A clinimetric comparison.,60Römhild J Fleischer S Meyer G et al.Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: Secondary analysis of RightTimePlaceCare data.,61Robertson S Cooper C Hoe J Hamilton O Stringer A Livingston G. Proxy rated quality of life of care home residents with dementia: A systematic review.Index score
Specific measure with self-rating and proxy rating
-13-items rate on 4-point scale
-Score range 13-52; 52 indicating excellent QOLMarriage, family, living situation, daily activities, physical health, energy, mood, finances, friends, memory, enjoyment, global
∙ Alzheimer's dementia population+
∙ Self-rating and proxy rating discrepancies. Roemhild 2018
∙ Limited validation in PD population–
∙ More responsive to QOL changes due to disease progression than palliative care interventionSchedule for the Evaluation of Individual Quality of Life Direct Weight
(SEIQOL-DW)39Martinez-Martin P Jeukens-Visser M Lyons KE et al.Health-related quality-of-life scales in Parkinson's disease: Critique and recommendations.,51Hickey A Bury G O'Boyle C A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS.–54Lee MA Walker RW Hildreth AJ Prentice WM. Individualized assessment of quality of life in idiophatic Parkinson's disease.,77O'Boyle C McGee H Hickey A Al E The Schedule for the Evaluation of Individual Quality of Life (SEIQoL).Index score
Generic measure
Interviewee nominates 5 domains and quantifies importance totaling 100; index score calculated by multiplying the rating of each domain weight and summing all the products. Higher scores indicate higher QOL.5 self-selected domains
∙ General population
∙ MD
∙ MND
∙ MS+General population +
MD ?
MND ?
MS ?Self-Efficacy to Manage Chronic Disease Scale (SEMCD)78Lorig KR Sobel DS Ritter PL Laurent D Hobbs M. ,79The English and Spanish Self-Efficacy to Manage Chronic Disease Scale measures were validated using multiple studies.Index score
Specific measure
-6-items rated on 9-point scale
-Score: mean of 6 items; higher means indicate greater self-efficacy.Fatigue, pain/discomfort, emotional distress, activity limitation, wellness, illness intrusiveness
∙ Populations with chronic medical conditions (rarely neurologic)++Caregiver-ReportedCaregiver Burden Inventory
(CBI)57Application of a multidimensional caregiver burden inventory.Index score
Specific measure
-24-item scale with 5 subscales; lower scores indicate lower burdenTime-dependence, developmental, physical, social, and emotional burden
∙ Dementia patient caregivers+?EQ-5D-3L (as above)FAMCARE280Aoun S Bird S Kristjanson LJ Currow D. Reliability testing of the FAMCARE-2 scale: Measuring family carer satisfaction with palliative care.Index score
Specific measure
-17-items rated on 5-point scale.
-Score range 17-85; higher scores indicate higher caregiver satisfaction with patient's careManagement of physical symptoms and comfort, provision of information, family support and patient psychological care.
∙ Oncology patient caregivers receiving palliative care+?HADS (as above)“Modified Lawton Positivity Questionnaire”“4 questions total (3 items and 1 yes/no)”No information about this measure able to be located.??Short Form-36
(SF-36)44Gruenewald DA Higginson IJ Vivat B Edmonds P Burman RE. Quality of life measures for the palliative care of people severely affected by multiple sclerosis: A systematic review.,81Brazier JE Harper R Jones NM et al.Validating the SF-36 health survey questionnaire: new outcome measure for primary care.Profile score
Generic measure
-36 items, scored 0-100; higher scores indicate better perceived health statePhysical functioning, social functioning, role limitations due to physical and emotional problems, mental health, energy and vitality, pain, general health perception
∙ General population++
∙ Low responsiveness, less appropriate in non-ambulatory and moderately to severely disabled populationsZarit Burden Interview
(ZBI)46Bédard M Molloy DW Squire L Dubois S Lever JA O'donnell M The Zarit Burden Interview: A new short version and screening version.,58Higginson IJ Gao W Jackson D Murray J Harding R. Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions.,65Martínez-Martín P Forjaz MJ Frades-Payo B et al.Caregiver burden in Parkinson's disease.,82Hérbert R Bravo G Préville M. Reliability, validity, and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia.Index score
Specific measure
ZBI-22
-22-item version rated on 4-point scale
-Score range 0-88
ZBI-12
-12-item version rated on 4-point scale
-Score range 0-48
-In both versions, higher scores indicate higher caregiver burden.Health status, patient dependence, exhaustion and uncertainty, guilt and self-criticism, embarrassment, anger, frustration, psychological burden, emotional reactions, personal and role strain.
∙ brain injury, dementia and advanced cancer patient caregivers
∙ PD caregivers+ZBI-22
dementia patient caregiver population +
ZBI-12
?“ZBI-Positivity”“8 items for which higher scores indicate more positivity related to caregiving” per Gao et al/Hepgul et al protocolNo information about this instrument able to be located.??