Category: Health-Related Quality of Life (N = 23)

Electronic Supplementary Material: Inventory of retained HIV-specific PROs by PRO categoryprevalence and ascending year of the PROs’first publication (N = 117)

Category: Health-Related Quality of Life (n = 23)

Name
(short title) / Year published / Central concept / Items / (Sub)scales / Global score(s) / Original references
Medical Outcomes Study-HIV Health Survey –Final version
(MOS-HIV) / 1991 / Health-related quality of life / 35 / General health perceptions, Physical functioning, Role functioning, Pain, Energy/fatigue, Health distress, Mental health, Cognitive functioning. / Summary scores: Physical health, Mental health. / 1, 2 (Earlier version)
HIV Overview of Problems Evaluation System
(HOPES) / 1992 / Health-related quality of life / 165 / Ambulation, Activities of daily living, Recreational activities, Weight loss, Difficulty working, Pain, Clothing, Symptoms, Problem obtaining information from medical team, Difficulty communicating with medical team, Control of medical team, Body image, Stigma, Psychological distress, Cognitive problems, Difficulty communicating with friend/relative, Friends/relatives difficulty interacting, Anxiety in medical situations, Worry, Interaction with children, At work concerns, Sexual interest, Sexual dysfunction, Communication with partner(s), Affection with partner(s), Interaction with partner(s), Overprotection by partner(s), Neglect of care by partner(s), Compliance, Concrete barriers, Looking for work, New relationships, Chemotherapy, problems, Radiation therapy problems, Antiretroviral therapy problems. / Summary scales: Physical, Medical interaction, Psychosocial, Sexual, Significant others /partners. / 3, 4
HIV-related Quality of Life Questions
(HIV-QOL) / 1993 / Health-related quality of life / 48 / Basic activities of daily living, Intermediate activities of daily living, Mental health, Total physical symptoms, Fever symptoms, Sleep disturbance, Neurological symptoms, Self-perceived memory problems, Fatigue, Disability days. / - / 5
AIDS Health Assessment Questionnaire
(AIDS-HAQ) / 1993 / Health-related quality of life / 116 / Disability, Energy, General health perception, Cognitive functioning, Mental health index, Social functioning, Health distress, Number of symptoms. / - / 6, 7
European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire and AIDS-specific module
(EORTC QLQ-C30 + AIDS-specific module) / 1993 / Health-related quality of life / 50 / Five functioning scales: Physical, Role, Emotional, Cognitive, and Social functioning; Three symptom scales: Pain, Fatigue, and Nausea/vomiting; One overall Quality of life scale; Four subscales as a part of the 20-item AIDS-specific module: Shortness of breath, Skin problems, Influenza-like symptoms, Neuropathy. / - / 8, 9
Fanning Quality of Life Scale
(FQLS) / 1993 / Health-related quality of life / 35 / None specified, however, factor analysis suggests two factors: Physical and psychological integrity (also described as sense of wholeness and self-worth); Personal desirability in intimate relationships. / The sum of all item scores. / 10
HIV Patient Reported Status and Experience
(HIV-PARSE)
Brief / 1994
1995 / Health-related quality of life / 40
21 / Current health perceptions, Physical functioning, Energy/fatigue, Emotional wellbeing, Cognitive functioning/distress, Role functioning, Quality of life, Will to function.
Current health perceptions, Physical functioning, Energy/fatigue, Mental health, Cognitive functioning/distress. / A Perceived Health Index (25 items).
A Perceived Health Index (13 items) / 11, 12
13
Health-Related Quality of Life
(HRQOL) / 1995 / Health-related quality of life / 64 / Health perception, Social function, Energy/fatigue, Physical function, Role function, Freedom from pain, Overall quality of life, Emotional well-being, Hopefulness, Freedom from loneliness, Will to function, Cognitive function/distress. / A physical health dimension and a mental health dimension. / 14
Functional Assessment of HIV Infection –Revised
(FAHI) / 1996 / Health-related quality of life / 44 / Physical wellbeing, Functional and global wellbeing, Emotional wellbeing/ living with HIV, Social/family wellbeing, Cognitive functioning. / The sum of all item scores. / 15, 16 (Earlier version), 17 (Adapted for low health literacy)
General Health Self-Assessment
(GHSA) / 1997 / Health-related quality of life / 49 / Health perceptions, Physical functioning (including measures of Intermediate activities of daily living, Basic activities of daily living), Psychological functioning (including measures of Mental health, Fatigue, Cognitive impairment), Social functioning, Symptoms. / - / 18
HIV-QL31 / 1997 / Health-related quality of life / 31 / - / The mean of all item scores. / 19
HIV/AIDS Targeted QOL Instrument
(HAT-QoL) / 1997 / Health-related quality of life / 42 / Overall function, Health worries, Sexual function, Disclosure worries, Financial worries, Life satisfaction, Medication concerns, HIV mastery, Provider trust. / - / 20, 21
Multidimensional QOL for Patients with HIV/AIDS
(MQoL-HIV) / 1997 / Health-related quality of life / 40 / Physical health, Physical functioning, Mental health, Social functioning, Cognitive functioning, Social support, Financial status, Sexual functioning, Partner intimacy, Access to care. / The MQoL-HIV Index, a weighted composite of two domain scores. / 22, 23
HIV Cost and Service Utilization Study Measure of Health-related Quality of Life
(HCSUS HRQL) / 1998 / Health-related quality of life / 30 / Physical functioning, Role functioning, Pain, General health perceptions, Emotional wellbeing, Positive affect, Negative affect, Anxiety, Depression, Social functioning, Energy. / - / 24
Living with HIV Scale / 1998 / Health-related quality of life / 32 / Avoiding the fear zone, Loss, Body image, Juggling treatments and side effects, Independence, Death calculations, Cherishing the environment, Coveting time, Resolving spiritual issues. / HIV struggles (composed of the items of the first six subscales) and HIV reverence (composed of the items of the last three). / 25
AIDS Clinical Trial Group Quality of Life Health Survey
(ACTG-QOL/601-602) / 1999 / Health-related quality of life / 21 / Physical functioning, Energy/fatigue, Social functioning, Role functioning, Cognition, Pain, Health perception, Emotional wellbeing. / - / 26, 27
VIH47 (French) / 2000 / Health-related quality of life / 47 / (Freely translated from French): Physical activity, Limitations to health due to physical problems, Limitations to health due to mental problems, Social wellbeing, Absence of pain, Energy/absence of fatigue, Emotional wellbeing, Perceived general health, Daily life, Distress, Cognition, Perceived change in health. / - / 28
World Health Organization Quality of Life -HIV
(WHOQOL-HIV)
Short form
(WHOQOL-HIV BREF) / 2004
2012 / Health-related quality of life / 120
31 / Physical, Psychological, Level of independence, Social relationships, Environment, Spirituality/religion/personal beliefs.
Physical, Psychological, Level of independence, Social, Environment, Spiritual/religious/personal beliefs. / - / 29
30
InstitutoSuperiore di Sanità Quality of Life
(ISSQoL) / 2006 / Health-related quality of life / 62 / Satisfaction with quality of life, Physical well-being, Role well-being, Depression and anxiety, Energy and vitality, Health distress, Cognitive functioning, Social functioning, Sexual life; Additional areas: Social support, Interaction with medical staff, Treatment impact, Body changes, Life planning, Motherhood/Fatherhood. / - / 31
Chronic Illness Quality of Life Ladder
(CIQOLL) / 2006 / Health-related quality of life / 7 / - / Four time periods are assessed the domains of life satisfaction considered (7 items summed for each): Present QOL, Past QOL, QOL without HIV, Future QOL. Scores may be calculated to assess the discrepancy between: Present QOL and QOL without HIV, Present QOL and Past QOL, Present and Future QOL. / 32
Neurological Quality of Life Questionnaire
(Neuro-QOL) / 2007 / Health-related quality of life / 114 / Security, Food, Housing, Financial, Productivity, Social support, Relationships, Psychological health, Physical health, Substance abuse, and Cognitive/neurological problems. / The sum of all item scores. / 33
Symptom Quality of Life Adherence
(HIV-SQUAD) / 2009 / Health-related quality of life / 26 / Symptoms (short-term side-effects), two dimensions of health-related quality of life (Physical and Psychological). / - / 34
Patient Reported Outcome Quality of Life-HIV Questionnaire
(PROQOL-HIV) / 2012 / Health-related quality of life / 43 / Physical health and symptoms, Treatment impact, Emotional distress, Health concerns, Body change, Intimate relationships, Social relationships, Stigma.
Simplified factor structure (2016): Physical health and symptoms, Health concerns and mental distress, Social and intimate relationships, and Treatment-related impact. / A total score on items not related to treatment and a total score including treatment-related items. / 35, 36, 37 (Simplified factor structure)

Category: ART and Adherence-Related Views and Experiences(n = 19)

Name
(short title) / Year published / Central concept / Items / (Sub)scales / Global score(s) / Original references
Zidovudine Drug Attitude Inventory
(Earlier version)
(ZDAI)
Antiretroviral Medication Attitude Scale
(AMAS) / 1997
2005 / Attitudes towards ART / 29
15 / ZDAI: Zidovudine causes negative side effects, Zidovudine protects against illness, Medicine does not need to be taken as prescribed, Medicine helps fight illness, Medicine is a reminder of illness and is unnatural.
AMAS: Improvement, Negative reminder, Flexibility and control, Prevention. / -
- / 38
39
Medication Attribution Scale
(MAS) / 1998 / Attributions about ART (its limitations on functioning, etc.) / 10 / - / The sum of all item scores. / 40
Adherence self-promotion strategies / 2000 / Strategies to adhere to ART / 35 / - / The total number of strategies reported. / 41
Perceived side effects / 2000 / Perceived side effects of ART / 20 / - / The sum of all item scores. / 41
HIV Treatment Satisfaction Questionnaire
(HIVTSQ)
Revised
(HIVTSQ-s),
New Change version
(HIVTSQ-c) / 2001
2006 / Satisfaction with ART / 10
10
10 / General satisfaction/clinical, Lifestyle/ease.
HIVTSQ-s: General satisfaction/clinical, Lifestyle/ease.
HIVTSQ-c: General satisfaction/clinical change, Lifestyle/ease change. / Total treatment satisfaction, the sum of 9 item scores.
Treatment satisfaction, the sum of 10 items.
Treatment satisfaction change, the sum of 10 items. / 42
43
Reasons for non-adherence to antiretroviral therapy / 2001 / Reasons for not adhering to ART / 20 / Negative experiences of HAART, Having a low priority for taking medication, Unintentionally missing doses. / The total number of reasons. / 44
Subcutaneous Injection Survey
(SIS) / 2002 / Satisfaction with ART -subcutaneous injection / 20 / Daily functioning, Ease of injection, Activities of daily living. / - / 45
Beliefs about Medicine Questionnaire
(BMQ-HAART) / 2004 / Beliefs about ART / 19 / HAART necessity, HAART concerns. / - / 46
HIV Medication Self-Reported Nonadherence Reasons
(SNAR Index) / 2004 / Reasons for not adhering to ART / 11 / Medication concerns, Routine disruption. / - / 47
Pictographic visual analogue scale of medication adherence self-efficacy / 2005 / Self-efficacy to adhere to ART / 6 / 3 scenes: unexpected visit, oversleeping, and alcohol involving both a less challenging situation and a more challenging situation. Following each scenario, participants were asked ‘How confident are you that you could take your medications in that situation as directed?’ and marked their level of confidence on a color visual analogue scale. Scores on the self-efficacy items were obtained by measuring the distance from left (Cannot do it at all) to right (Completely certain can do it) on each of the six visual analogue scales. Subscores for the less challenging and more challenging situations can each be calculated. / A total score can be obtained by summing the measurements across the six scenes and dividing by 6 to obtain a mean rating. / 48
Antiretroviral General Adherence Survey
(AGAS) / 2006 / Ease and ability to adhere to ART / 5 / - / The sum of all item scores or a proportion (by dividing this score by the total possible score). / 49, 50
HIV Medication Readiness Scale
(HMRS) / 2007 / Readiness to adhere to ART / 10 / - / The sum of all item scores. / 51
Coping with HIV Treatment Side Effects
(SECope) / 2007 / Coping with ART side effects / 20 / - / 52
HIV Treatment Optimism Scale
(HTOS) / 2009 / Optimism about ART / 19 / Susceptibility, Condom motivation, Severity. / - / 53
HIV Medication Taking Self-efficacy Scale
(HIV MT SES) / 2010 / Self-efficacy to adhere to ART / 26 / Self-efficacy beliefs, Outcome expectancy. / The sum of all item scores. / 54
Brief Estimate of Health Knowledge and Action-HIV version
(BEHKA-HIV) / 2010 / ART-related health literacy / 8 / Knowledge, Action. / Scores can be classified as low, marginal, or adequate using tertiles derived from a simple frequency distribution of scores. / 55
HIV Treatment Readiness Measure
(HTRM) / 2011 / Factors affecting readiness for ART / 38 / Disclosure, Psychosocial issues, Connection with care, HIV medication beliefs, Alcohol and drug use. / The sum of all item scores and the mean of all item scores. / 56
Questionnaire to Evaluate Adherence to HIV
(CEAT-VIH) / 2013 / Factors affecting adherence to ART / 20 / - / The sum of all item scores; allows classification of subjects according to their degree of adherence: ‘strict adherence (good)’ = percentile C85; ‘insufficient (struggling)’ = percentile between 84 to 50; and ‘insufficient (non-compliance)’ = percentile lower than 49. / 57
HIV Treatment Regimen Fatigue Scale / 2015 / Regimen fatigue / 22 / Treatment cynicism, Self-efficacy. / - / 58

Category: Healthcare-Related Views and Experiences(n = 15)

Name
(short title) / Year published / Central concept / Items / (Sub)scales / Global score(s) / Original references
Questionnaire to assess interpersonal aspects of care / 1992 / Quality of care- interpersonal aspects / 65 / Satisfaction score, Total problem score, Preference for information, Preferences for involvement in decision-making. / - / 59 (original instrument for in- hospital care), 60 (adapted to outpatient setting), 61 (adapted for home healthcare services)
Healthcare Needs Scales for Patients with HIV/AIDS / 1992 / Patient needs- for healthcare / 19 / Psychosocial/Financial support, Health behaviors/Social support, Health management. / The sum of all item scores. / 62, 63, 64 (Adapted version, 24 items)
HIV Educational Needs Assessment Tool
(HENAT) / 1997 / Patient-needs -for HIV education / 34 / Treatments, Entitlements, Relationships, Preventing infections, Social support, Working. / An HIV Educational Needs Index (22 items). / 65
Barriers to Care Scale
(BACS) / 1998 / Barriers to care / 12 / Geography/distance barriers, Medical and psychological service barriers, Community stigma barriers, Personal resource barriers. / A Total BACS Score, the sum of all item scores divided by 12. / 66
Patient satisfaction with HIV service provision in NPMS hospitals (National Prospective Monitoring System –English hospitals) / 1999 / Patient satisfaction -with HIV service provision in NPMS hospital / 28 / Staff attitudes, Staff skills, Access to services, Information, Seeing preferred staff, Clinic environment. / - / 67
Quality of patient-clinician communication about end of life care / 1999 / Quality of clinician-patient communication -on end of life care / 4 / - / The sum of all item scores, dichotomized into low score: 7-11 and high score: 12. / 68
Competing needs and barriers to care for persons with HIV / 1999 / Barriers to care -competing needs / 4 / - / Presence of at least one competing need. / 69
HIV-specific physician-patient communication scale / 2000 / Quality of clinician-patient communication -on HIV specific questions / 4 / - / The mean of all item scores, linearly transformed to range from 0 to 100. / 70
Barriers to Adherence Checklist
(BAC) / 2000 / Barriers to care -adherence to care / 56 / - / The total number of barriers present. / 41
Treatment-related Empowerment Scale
(TES) / 2001 / Empowerment (involvement in treatment decision-making) / 10 / - / The sum of all item scores. / 71
QUOTE-HIV
(Quality of care through the patient’s eyes) / 2003 / Quality of care / 27 / Six scales evaluate importance and performance components for each of the following groups: General practitioners, Medical specialists, AIDS nursing consultants. / A Quality Improvement Score on a health service by an individual patient is calculated by multiplying the importance score by the performance score. / 72
Health beliefs (appropriate for HIV-related psychotherapy) / 2003 / Health beliefs about mental healthcare / 36 / Perceived barriers, Perceived benefits, Internal cues to action, External cues to action, Motivation, Perceived severity, Perceived susceptibility. / - / 73
Attitudes toward HIV Health Care Provider scale
(AHHCP) / 2004 / Attitudes toward healthcare providers / 19 / Professionalism, Emotional support. / The sum of all item scores. / 74
Health Care Relationship Trust Scale
(HCR) / 2006 / Trust toward healthcare providers / 15 / Interpersonal connection, Respectful communication, Professional partnering. / The sum of item scores and the mean of item scores. / 75
HIV interdisciplinary care quality measure / 2014 / Quality of care -interdisciplinary care / 10 / - / The sum of all item scores and the mean of all item scores. / 76

Category: Psychological Challenges(n = 12)

Name
(short title) / Year published / Central concept / Items / (Sub)scales / Global score(s) / Original references
HIV Impact Scale
(HIVIS) / 1992 / HIV-related distress / 40 / Psychological preoccupations (emotional), Psychological preoccupations (social), Interpersonal preoccupations, Health-related preoccupations, Material preoccupations. / The mean of all item scores. / 77, 78
HIV Stressor Scale / 1996 / HIV-related stress / 25 / - / The number of stressors checked and rated stress, the mean stressfulness rating for all items checked. / 79
Problem checklist
(Earlier version)
HIV/AIDS Stress Scale / 1996
2002 / HIV-related stress / 29
23 / Problem checklist: Emotional and existential concerns, Instrumental concerns.
HIV/AIDS Stress Scale: Social stress, Instrumental stress, Emotional/Existential stress. / The number of problems checked.
- / 80
81
Emotional distress / 2000 / HIV-related distress / 17 / - / The sum of all item scores. / 82
Existential Loneliness Questionnaire
(ELQ) / 2002 / HIV-related existential loneliness / 22 / - / The sum of all item scores and the mean of all item scores. / 83
Life Experiences Survey -Modified HIV-specific version
(LES-10-Modified) / 2003 / HIV-related stress / 10 / - / A Life Stress Score, the sum of item scores for all negatively rated events divided by the total number of negative life events experienced. / 84, 85 (Earlier non HIV-specific version)
HIV worry scale / 2003 / HIV-related distress / 9 / - / The mean of all item scores. / 86
Self-Care Symptom Management for Living with HIV/AIDS Scale -Depression
(SCSMS-D) / 2007 / Symptoms -of depression / 4 / - / The sum of all item scores. / 87
PTSD Checklist for people living with HIV
(PCL) / 2011 / Symptoms -of posttraumatic stress disorder / 12 / Re-experiencing the traumatic event, Avoidance of anything associated with the traumatic event, A sense of numbing, A hyperarousal state. / - / 88
HIV and Abuse Related Shame Inventory
(HARSI) / 2012 / HIV and abused-related shame / 31 / HIV-related shame, The impact of shame on behavior, Sexual abuse-related shame. / - / 89
Impact on Self-Concept Scale
(ISCS) / 2013 / Impact of HIV on self-concept / 10 / Self-loss, Self-growth. / - / 90
Impact of HIV Survey / 2015 / Challenges of HIV survivorship (psychological, existential, etc.) / 38 / Health Awareness, Positive self-evaluation, Positive outlook, Value of relationships, Negative self-evaluation-outlook, Health anxiety, Body changes. / - / 91

Category: Symptoms(n = 12)

Name
(short title) / Year published / Central concept / Items / (Sub)scales / Global score(s) / Original references
HIV Symptoms Measure / 1991 / HIV-related symptoms / 20 / - / The total number of symptoms reported and a Distress score, calculated from the ranking of symptoms. / 92
Riverside Symptom Checklist / 1993 / HIV-related symptoms / 28 / Physical, Cognitive, Psychological. / - / 93
HIV Symptom Index / 1994 / HIV-related symptoms / 12 / - / The sum of frequency ratings for the symptoms. / 94
HIV Assessment Tool (Part 1)
(HAT) / 1994 / HIV-related symptoms / 34 / None specified, however 3 factors reported: General well-being, General symptoms, and HIV-specific symptoms. / The sum of all item scores divided by 34. / 95
Self-Rating Slowness Scale
(SRSS) / 1998 / Symptoms of psychomotor slowness / 11 / - / The sum of all item scores. / 96
Subjective Peripheral Neuropathy Screen
(SPNS) / 1998 / Symptoms of peripheral neuropathy / 6 / - / A Clinical Severity Grade based on presence and severity of the symptoms. Raw scores of 0; 1-3; 4-6; and 7-10 are translated into the following Clinical Severity Grades: 0 (none of the symptoms), 1, 2, and 3 (at least one symptom at the highest severity); and an Average Severity Score based on the sum of each symptom score divided by 6. / 97
Sign and Symptom Checklist for HIV
(SSC-HIV)
Revised
(SSC-HIVrev) / 1999
2001 / HIV-related symptoms / 26
72 / SSC-HIV: Malaise/weakness/fatigue, Confusion/distress, Fever/chills, Gastrointestinal discomfort, Shortness of breath, Nausea/vomiting.
SSC-HIVrev: Eleven scales in Part 1: Numbness, Fear, GI upset, Bruising/bleeding, Fatigue, Headache, Sore throat, Rectal itch, Shortness of breath, Fever, Body changes. One scale in Part 3 concerned with Gynecological symptoms for women. / -
- / 98
99
HIV Cost and Services Utilization Study Symptom Measure
(HCSUS Symptom Measure) / 2000 / HIV-related symptoms / 14 / - / A Symptom-number index and a Symptom-bothersomeness index. / 100
HIV-related symptoms / 2000 / HIV-related symptoms / 20 / - / The sum of reported symptoms. / 82
HIV Symptom Index or Symptoms Distress Module of the ACTG
(HIV-SI/SDM) / 2001 / HIV-related symptoms / 20 / - / A Symptom count and a Symptom bother count.
HIV Symptom Distress Scale (2012). / 101, 102
HIV-Related Fatigue Scale
(HRFS) / 2002 / HIV-related fatigue / 56 / Fatigue intensity, Responsiveness of fatigue to circumstances, Fatigue-related impairment of functioning. The last scale can be further divided into 3 subscales: Impairment of activities of daily living, Impairment of mental functioning, Impairment of social functioning. / - / 103, 104
Self-Care Symptom Management for Living with HIV/AIDS Scale -Fatigue
(SCSMS-F) / 2007 / Symptoms of fatigue / 4 / - / The sum of all item scores. / 87

Category: Psychological Resources(n = 11)