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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

Self-care

Usual activities

Pain/discomfort

Anxiety/depression

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

Symptoms

Symptom stability

Social limitation

Self-efficacy

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

Family

 
 

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

Eating

Work

Home management

Recreation and pastimes

Ambulation

Mobility

Body care and movement

Social interaction

Alertness behavior

Emotional behavior

Communication

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

Sadness

Guilt

Hostility

Shyness

Fatigue

Surprise

Joviality

Self-Assurance

Attentiveness

Serenity

 

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:

Energy

Pain

Emotional reactions

Sleep

Social isolation

Physical mobility

7 life areas affected

Work

Looking after the home

Social life

Home life

Sex life

Interests and hobbies

Vacations