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Table 6 Details of PROMs and PROMs’ domains used in the included studies

From: Prognostic value of patient-reported outcome measures in adult heart-transplant patients: a systematic review

Study PROM Generic or disease specific Domains Comments
Delgado, 2015 EQ-5D-3L Generic Mobility
Usual activities
A visual analog scale that ranges from 0 (worst state) to 100 (perfect health) is used to determine patients’ perceived Health Related Quality of life
  Kansas City Cardiomyopathy Questionnaire (KCCQ) Disease specific Physical Function
Symptom stability
Social limitation
Quality of life
Two summary scores can be calculated:
Overall summary score (OSS): includes the total symptom, physical function, social limitations and quality of life scores
Clinical summary score (CSS): includes total symptom and physical function scores to correspond with NYHA Classification
The scores are converted into a scale ranging from 0 (worst level) to 100 (highest level)
  Duke-UNC Functional Social Support Questionnaire Generic This eight-item PROM measures the strength of the person's social support network Scoring ranges from 11 (lowest level of social support) to 55 (highest level)
A score of ≥ 32 indicates a normal social support network
  Zarit Caregiver Burden Interview Generic This 22-item PROM measures the impact of the patient’s condition on caregivers’ life, stress, and burden The closest relative or caregiver of each patient completed this PROM
Scoring ranges from 0 (lowest burden) to 88 (highest burden)
Farmer, 2013 and White-Williams, 2013 Ferrans and Powers Quality of Life Index Generic Health and functioning
Psychological/spiritual domain
Social and economic domain
  Heart Transplant Symptom Checklist Disease specific The Heart Transplant Symptom Scale measures 92 symptoms related to heart disease and heart failure, transplantation, medication side effects, and complications commonly found in this population  
  Heart Transplant Stressor Scale Disease specific Finding out about the need for a transplant
Having end-stage heart disease
Family worrying
Illness symptoms
Waiting for a donor
Uncertainty about the future
No energy for leisure activities
Constantly feeling worn out
Less control over life
Dependency on others
  Sickness Impact Profile Generic Sleep and rest
Home management
Recreation and pastimes
Body care and movement
Social interaction
Alertness behavior
Emotional behavior
The overall maximum score is 100%
0% represents a good health status without physical or behavioral changes due to illness
100% represents a poor health status or a major impact of illness on behaviour
  Jalowiec Coping Scale Generic Confrontive (10 items)
Evasive (13 items)
Optimistic (9 items)
Fatalistic (4 items)
Emotive (5 items)
Palliative (7 items)
Supportive (5 items)
Self-reliant (7)
Consists of 60 coping behaviors
  Heart transplant Social Support Index Disease specific 5 questions addressing emotional support
10 questions addressing tangible support
This PROM measures the structural aspects of the social support network, and satisfaction with support (emotional, tangible, and overall)
  Positive and Negative Affect Schedule Generic Fear
Harper, 1998 The Millon Behavioral Health Inventory Generic 8 coping/adjustment styles associated with personality types
6 psychogenic attitude scales
3 psychosomatic correlates scales
3 prognostic indices scales
Consists of 60 coping behaviors
O’Brien, 1987 Nottingham Health profile Generic 6 dimensions of social functioning:
Emotional reactions
Social isolation
Physical mobility
7 life areas affected
Looking after the home
Social life
Home life
Sex life
Interests and hobbies