Psychological Aspect and Quality of Life in Porphyrias: A Review
Abstract
:1. Introduction
2. Methods
3. Acute Hepatic Porphyrias (AHPs)
3.1. Questionnaire Assessment of Psychological Aspect of AHPs
3.2. Qualitative Approach of the Psychological Aspect of AHPs
4. Porphyria Cutanea Tarda (PCT)
5. Erythropoietic Protoporphyria (EPP)
5.1. Questionnaire Assessment of Psychological Aspect of EPP
5.2. The Qualitative Approach of the Psychological Aspect of EPP
6. Discussion
7. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Acknowledgments
Conflicts of Interest
References
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Authors | Assessment Method | Age (Years) | Patients (n) | Item (n) | Score | Score Max |
---|---|---|---|---|---|---|
Quantitative methods by using questionnaires | ||||||
Millward LM, et al., 2001 | Medical Outcomes Study (MOS) | >18 | 81 AIP: 51 VP: 25 HCP 5 | 20 item | Health Perception 54.1 (±2.4) | 100 |
EuroQoL Questionnaire (EuroQoL) | NR | M 70–79 yrs = 0.10 F 60–69 yrs = 0.63 | 1 | |||
Hospital Anxiety and Depression Scale (HADS) | 14 item | Anxiety 7.1 ± 4.9 Depression 4.6 ± 4.7 | 21 | |||
Illness Perceptions Questionnaire (IPQ) | NR | NR | NR | |||
Millward LM, et al., 2005 | Beck Anxiety Inventory (BAI) | >18 | 90 58 AIP 32 VP | 21 item | 10.3 ± 9.4 | 63 |
Beck Depression Inventory (BDI) | 21 item | 8.5 ± 8.5 | 63 | |||
State Trait Anxiety Inventory (STAI) | 20 item | 80 | ||||
Hospital Anxiety and Depression Scale (HADS) | 14 item | NR | 21 | |||
General Health Questionnaire (GHQ12) | 12 item | 2.21 ± 3.42 | 1 | |||
Jiménez-Monreal AM, et al., 2015 | Health-related Quality of Life Questionnaire (EQ-5D) | >18 | 32 (AIP) | 5 domains | VAS 61.60 | 100 |
Activities of Daily Living (Katz-ADL and Barthal Index) | 10 item | 81.5% independent | 100 | |||
Yang J, et al., 2018 | SF-36 Health Survey (Chinese version 1.0) | mean 29 | 27 | 36 item | 85.74 | 100 |
Event Scale-Revised Questionnaire (IES-R) | 22 item | 36.7 ± 11.8 | > 26 | |||
Bronisch O, et al., 2019 | Porphyria-oriented Quality of Life Questionnaire | >18 | 62 | 9 item | 5 | 10 |
Gouya L, et al., 2020 | EuroQoL 5–Dimensions Questionnaire 5–Levels (EQ–5D–5L) | ≥18 | 112 104 AIP 3 HCP 5 VP | 5 item | 0.78 | 1 |
Qualitative descriptive approaches | ||||||
Wikberg A, et al., 2000 | Qualitative approach (interwiew) | mean 55 | 5 | 20 ± 45 min | NR | NR |
Naik H, et al., 2016 | Focus group with interactive discussion | >18 | 16 15 AIP 1 VP | 1.5–2 h interview | No score | NR |
Simon A, et al., 2018 | Qualitative one-on-one interviews | mean 40 | 19 | 2 h interview | No score | NR |
Gill L, et al., 2021 | Online survey | ≥18 | 38 28 AIP 9 VP 1 HCP | NR | No score | NR |
Telephone interview | 10 on 38 were eligible | 1 h interview |
Authors | Assessment Method | Age (Years) | Patients (n) | Item (n) | Score | Score Max |
---|---|---|---|---|---|---|
Quantitative methods by using questionnaires | ||||||
Jong CT, et al., 2008 | Dermatology Life Questionnaire Index (DLQI) | Mean 57 | 12 | 10 item | >10 | 30 |
Andersen J, et al., 2016 | Brief Illness Perception Questionnaire (BIPQ) | 25–78 | 263 | 8 item | A group 39.6 (35.8–43.4) R group 29.7 (27.9–31.5) L group 27.2 (23.3–31.1) | Between group p < 0.01 |
Self-reported Health Complaints (SHC) | 29 item | A group 20.5 (16.7–24.2) R group 14.1 (12.4–15.8) L group 10.7 (7.7–13.7) | ||||
INTRUSION: Impact of Events Scale (IES) | 7/15 item | A group 11.7 (9.1–14.3) R group 6.1 (5.1–7.1) L group 3.0 (1.6–4.4) | ||||
AVOIDANCE: Impact of Events Scale (IES) | 8/15 item | A group 12.1 (9.5–14.7) R group 6.1 (5.1–7.1) L group 4.3 (2.2–6.4) | ||||
Andersen J, et al., 2020 | Short Form-12 Health Survey vs. 2 (SF-12) | 24–79 | 12 | 12 item | PCS mean 48 MCS mean 47 | Mean 50 |
Qualitative descriptive approaches | ||||||
Andersen J, et al., 2015 | Qualitative approach (interactive discussion) | 31–77 | 21 | 1.5 h of interview | Higher impact of disease | NR |
Authors | Assessment Method | Age (Years) | Patients (n) | Item (n) | Score | Score Max |
---|---|---|---|---|---|---|
Quantitative methods by using questionnaires | ||||||
Langendonk JG, et al., 2015 | EPP disease-specific Quality of Life Questionnaire (EPPQoL) | >18 | 167 | 12-item | 31% | 100% |
Biolcati G, et al., 2015 | EPP—specific Quality of Life (QoL) Questionnaire by Clinuvel | >18 | 173 | 18/16-item | 4 | 10 |
Naik H, et al., 2019 Apr. | PROMIS | >18 | 193 | NR | Higher for pain | NR |
HADS | 103 | NR | Border line | NR | ||
IPQR | 104 | NR | Higher | >20 | ||
XLP/EPP-specific tools | 107 | 7 day recall | Higher | 100 | ||
Barman-Aksözen J, et al., 2020 | EPP-QoL Questionnaire | >18 | 35 | 12 item | 49.10% | 100% |
Qualitative descriptive approaches | ||||||
Rufener AE. 1989 | EPP Questionnaire + Structurated interview | >18 | 10 | 25-item | NR | NR |
Structurated interview | 7–11 >18 | 12 | 3–6 h of interview | |||
Naik H, et al., 2019 Jan. | Qualitative approach (focus group with interactive discussion) | 10-nov | 6 | 17 open questions | NR | NR |
24–25 | 4 | |||||
Parents 29–55 | 14 |
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Francesca, G.; Nicolli, A.; Colaiocco, A.; Di Pierro, E.; Graziadei, G. Psychological Aspect and Quality of Life in Porphyrias: A Review. Diagnostics 2022, 12, 1193. https://doi.org/10.3390/diagnostics12051193
Francesca G, Nicolli A, Colaiocco A, Di Pierro E, Graziadei G. Psychological Aspect and Quality of Life in Porphyrias: A Review. Diagnostics. 2022; 12(5):1193. https://doi.org/10.3390/diagnostics12051193
Chicago/Turabian StyleFrancesca, Granata, Annamaria Nicolli, Alessia Colaiocco, Elena Di Pierro, and Giovanna Graziadei. 2022. "Psychological Aspect and Quality of Life in Porphyrias: A Review" Diagnostics 12, no. 5: 1193. https://doi.org/10.3390/diagnostics12051193