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Implementation of patient-reported outcome measures in a heart transplant recipient registry: First step toward a patient-centered approach
Authors:
Mahmoudi, R., Moitie, T., Dorent, R., Guillemin, F., and Couchoud, C.
Abstract:
BACKGROUND: Heart transplantation (HTX) is a well-established treatment for suitable patients with end-stage heart failure, intended to prolong their survival and improve their health-related quality of life (HR-QoL). No international consensus exists, however, about the preferred patient-reported outcomes (PROs) and their measures (PROMs) for heart transplant recipients. The purpose of this study, the first step in a mixed-method investigation, was to review the PROMs developed and used in this population to identify the instruments for measuring HR-QoL and adherence to immunosuppressive medications most appropriate for heart transplant patients. METHODS: This systematic search of the literature in the PubMed database focused on the assessment of PROMs for patients after HTX. We analyzed 66 studies with cross-sectional, 28 with longitudinal, and 2 with mixed-methods designs, as well as 6 literature reviews. RESULTS: These 102 articles used 115 different PROMs, which we categorized as generic HR-QoL instruments (n = 19), domain-specific instruments (n = 71), heart disease-specific instruments (n = 9), and heart transplant-specific instruments (n = 16). They cover different dimensions of HR-QoL and of immunosuppressive-drug experience, with diverse numbers of items, types of scales, and psychometric properties. CONCLUSIONS: Despite the abundance of instruments, PROMs for HTX can be improved to meet other patient expectations (i.e., by including important issues such as coping strategies, employment, social support, sexual relationships, spirituality, and beliefs), while paying attention to ease of use, reliability, validity, and the contribution of new technologies. A qualitative approach will complete our project of developing a patient-centered instrument for HTX patients.
DOI:
10.1111/ctr.14708
Journal:
Clin Transplant
issn:
0902-0063
Publication year:
2022
pages:
e14708
Symptom status:
Cognitive/mental state
Functional status:
Cognitive/mental functioning
General health perceptions / HRQoL:
Health-related quality of life
Age:
Adults (18-65)
Disease:
Codes for special purposes
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
ALSS - Atkinson Life Satisfaction Scale AMBS - Adolescent Medication Barriers Scale (also: BS - Barriers Scale) BAI - Beck Anxiety Inventory (versions: BAI-Youth) BDI - Beck Depression Inventory (versions: mBDI; BDI-Y; BDI-SF) BIQ - Body Image Questionnaire (versions: BIQ-20) Brief-COPE - Coping Orientation to Problems Experienced Inventory-short version of COPE (versions: French version) BSI - Brief Symptom Inventory (versions: BSI-6; BSI-18; BSI-53) CAS - Control Attitude Scale/Index (versions: CAS-R) CBS - Caregiver Burden Scale (also: Caregiving Burden Scale) (versions: CBS-M; CBS-E) CES-D - Centre for Epidemiologic Studies-Depression Scale (versions: CES-D-R; CES-D-8; CES-D 9; CES-D-10; CES-D-11; CES-D-13; CES-D-15; CES-D-20; CES-D-Children; CES-D-SF; CES-D m) CGI - Clinical Global Impression Scale (versions: CGI-S - CGI-Severity; CGI-I - CGI-Improvement) COPE - Coping Orientation to Problems Experienced Inventory (versions: A-COPE - Adolscent COPE; Kid-COPE; Brief-COPE - SEE Brief-COPE) Desire for Control Scale DS - Demoralization Scale DSM - Diagnostic and Statistical Manual of Mental Disorders (versions: DSM-IV -4th Edition; DSM-5 - DSM 5th edition) EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis) Fatigue Status Scale F-COPES - Family Crisis Oriented Personal Evaluation Scales FLZ - Fragen zur Lebenszifriedenheit (Questions on Life Satisfaction) (versions: FLZM; FLZM-Cystic Fibrosis) FSI - Fatigue Symptom Inventory F-SoZu - Evaluation of the short-form social support questionnaire (Also: F-SoZu-K22 - short version) GAD - Generalised Anxiety Disorder (versions: GAD-7) Giessen Complaints Inventory GSES - Generalized Self Efficacy Scale GSRS - Gastrointestinal Symptom Rating Scale HADS - Hospital Anxiety and Depression Scale HBI - Health Behavior Inventory HHI - Herth Hope Index HPLP - Health Promoting Lifestyle Profile (versions: HPLP I; HPLP II) HSQ - Health Status Questionnaire (versions: HSQ-v2.0) IES - Impact of Event Scale (versions: IES-R; IES-13; CRIES - Children's revised IES; IES-IDs - IES-Intellectual Disabilities) IPQ - Illness Perceptions Questionnaire (versions: M-IPQ; IPQ-R; IPQ-R BCRL - IPQ-R-breast cancer-related lymphoedema; B-IPQ/BIPQ - Brief-IPQ; IPQ-Schizophrenia; BIPQ-P - BIPQ-Physician point of view) ISEL - Interpersonal Support Evaluation List (versions: ISEL-12; ISEL-QoL) JCS - Jalowiec Coping Scale Kessler Psychological Distress Scale (versions: K-10; K-5; K-6) KIDSCREEN-27 items - Health Related Quality of Life Questionnaire for Children and Young People and their Parents-27 items KPS - Karnofsky Performance Scale (of: Status) LOT - Life Orientation Test (versions: LOT-R) LSI - Life Satisfaction Index (versions: LSIA - LSI-Adolescents) MINI International Neuropsychiatric Interview Mood Health Questionnaire NHP - Nottingham Health Profile NIDDK-QOL - National Institute of Diabetes and Digestive and Kidney Diseases-Quality of Life OHIP - Oral Health Impact Profile (versions: OHIP-49; OHIP-14; Modified OHIP-14; OHIP-20; OHIP-G - German; OHIP-G5; OHIP-G21; OHIP-OFP - OHIP-OroFacial Pain) PAIS - Psychosocial Adjustment to Illness Scale (versions: PAIS-SR - PAIS-Self Report) PANAS - Positive and Negative Affect Scale (versions: PANAS-20; PANAS-X - Expanded Form) Pearlin Mastery Scale Perceived Health Competence Scale PGISI - Patient Global Impression Severity of Illness scales PGWBI - Psychological General Well-Being index [alias: PGWB] (versions: PGWBI-S - short form) PHQ - Patient Health Questionnaire (versions: PHQ-2; PHQ-4; PHQ-8; PHQ-9; PHQ-9 short; aPHQ-9; PHQ-A; PHQ-22; PHQ-8; PHQ-15) Physical Competency Scale POMS - Profile of Mood States (versions: POMS-11; POMS-14; POMS-37; POMS-65; Brief POMS; POMS-Adolescent; POMS-sf; revised POMS; POMS-F - POMS-fatigue; POMS-Bi - POMS-Bipolar) Post-operative Work History PROMIS-D - PROMIS Depression PSM - Optimism-Pessimism Q-LES-Q - Quality of Life Enjoyment and Satisfaction Questionnaire (versions: Endicott Q-LES-Q; Q-LES-Q-18; Q-LES-Q-SF) QLI - Quality of Life Index [alias: Ferrans and Powers Quality of Life Index] (versions: QLI-III; QLI-D - QLI-Dialysis; QLI-CV - QLI-Cancer Version; QLI-Cardiac Version; QLI-WV - QLI Wound version) Quick Inventory Depressive Symptomatology-Self Report Rating Question Form RDI - Renard Diagnostic Interview SCL-90-R - Symptom Checklist 90-Revised SCL-90 - Symptom Checklist-90 (versions: SCL-92) Self-Efficacy of Exercise Scale SF-12 - 12-item Short Form Health Survey [alias: RAND-12] (versions: SF-12v2; VR-12 - Veterans SF-12; SF-12 MCS; SF-12 PCS) SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: MOS SF-36]] (versions: VSF-36 LoA - Visual Version of the SF-36 Limitations of Physical Activities domain; VR-36 - Veterans SF-36) database.cosmin.nl SIGIT-QoL - Impact of Gastrointestinal Symptoms on Quality Of Life Simmons’ Post-transplant Symptom Inventory SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP; SIP/ALS-19) SOC - Sense of Coherence Scale (versions: SOC-9; SOC-13; SOC-29; SOC-81) SOM - Sense of Mastery Scale SPWB - Scales of Psychological Well-Being (versions: SPWB-SF) SQ - Kellner’s Symptom Questionnaire SSQ - Social Support Questionnaire (versions: SSQ-SF) STAI - State-Trait Anxiety Inventory (versions: STAI-X - STAI Form X; STAI-Y - STAI Form Y; STAI sf; STAI-4; STAI-6) Symptom Questionnaire VAS - Visual Analogue Scale (versions: vertical; horizontal) Ways of Coping Scale WCCL - The Ways of Coping Checklist (versions: WCCL-R) WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (versions: WHOQOL-HIV-BREF; WHOQOL-BREF dialysis) Work History Tool ZBI - Zarit Burden Inventory/interview (also Zarit Caregiver Burden Inventory) (versions: ZBI-4; ZBI-12; ZBI-22; ZBI-SF)
