Mental, emotional and social dimensions of quality of life and their relationship with physical and functional status in adults with haemophilia

被引:0
作者
Rodriguez, Marta Aguilar [1 ,2 ]
Perez-Alenda, Sofia [1 ]
Carrasco, Juan J. [1 ,3 ]
Megias-Vericat, Juan Eduardo [4 ]
Bonanad, Santiago [2 ]
Querol, Felipe [1 ,2 ]
Chimeno-Hernandez, Ana [1 ]
机构
[1] Univ Valencia, Dept Physiotherapy, Physiotherapy Mot Multispecial Res Grp PTinMOTION, Valencia, Spain
[2] Univ & Polytech Hosp La Fe, Haemostasis & Thrombosis Unit, Valencia, Spain
[3] Univ Valencia, Intelligent Data Anal Lab, Valencia, Spain
[4] Univ & Polytech Hosp La Fe, Pharm Dept, Drug Clin Area, Valencia, Spain
关键词
Haemophilia; Hemarthrosis; Health status; Ultrasound; Blood coagulation factor; Quality of life; Assessment patient outcome; QUESTIONNAIRE; IMPAIRMENT; DISEASE; IMPACT; PAIN;
D O I
10.1016/j.thromres.2024.109181
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Introduction: A comprehensive treatment for patients with haemophilia (PwH) should focus on how the disease interferes with their mental, emotional and social environment to analyse if all the therapeutic efforts invested in their physical status have positive impact on a life worth living. Aim: To analyse the correlation between the physical status of a cohort of adults with haemophilia and their mental, emotional and social states regarding their treatment modality; Also, to investigate which variables are most related to quality of life (QoL), joint health and emotional, mental and social states. Methods: In this cross-sectional, 102 adults with haemophilia divided into a prophylactic group (G1, n = 77) and on-demand group (G2, n = 25) were included. Demographic and clinical characteristics, health joint (HJHS), presence of synovitis with ultrasound, self-perceived functionality (HAL) and QoL (A36-HaemoQoL), were analysed. Results: In G1 all the variables that defined the physical status correlated (rho: 0.33 to 0.72) to the mental and social spheres. The emotional state correlated with the self-perceived ones. In G2 physical status did not correlate with the three states. According to the regression models, HAL was the variable that most influenced the QoL (together with the bleedings in the last year, R2 = 0.61), emotional (R2 = 0.16), mental (together with HJHS, R2 = 0.41) and social states (R2 = 0.39). In addition, the HJHS was influenced by synovitis, HAL, mental health, age and the bleeding history (R2 = 0.83). Conclusion: Emotional, mental and social states of PwH in prophylaxis are correlated to their physical status, being the self-perceived functionality the variable that most influenced in their QoL.
引用
收藏
页数:9
相关论文
共 36 条
  • [1] The disability paradox: high quality of life against all odds
    Albrecht, GL
    Devlieger, PJ
    [J]. SOCIAL SCIENCE & MEDICINE, 1999, 48 (08) : 977 - 988
  • [2] Development of a new disease-specific quality-of-life questionnaire to adults living with haemophilia
    Arranz, P
    Remor, E
    Quintana, M
    Villar, A
    Díaz, JL
    Moreno, M
    Monteagudo, J
    Ugarriza, A
    Soto, I
    Pérez, R
    Chacón, J
    García-Luaces, M
    Cid, A
    Balda, I
    López, MF
    Gutíerrez, MJ
    Martínez, E
    Marrero, C
    Prieto, M
    Sedano, C
    Vaca, R
    Altisent, C
    Hernández-Navarro, F
    [J]. HAEMOPHILIA, 2004, 10 (04) : 376 - 382
  • [3] Invisible bleeds: Lived experiences and barriers to care for men with hemophilia
    Arya, Sumedha
    Siad, Fartoon M.
    Wilton, Pamela
    Page, David
    Boma-Fischer, Laurence
    Floros, Georgina
    Winikoff, Rochelle
    Teitel, Jerome
    Sholzberg, Michelle
    [J]. JOURNAL OF THROMBOSIS AND HAEMOSTASIS, 2022, 20 (02) : 296 - 306
  • [4] Ultrasonography in the monitoring of management of haemarthrosis
    Aznar, J. A.
    Abad-Franch, L.
    Perez-Alenda, S.
    Haya, S.
    Cid, A. R.
    Querol, F.
    [J]. HAEMOPHILIA, 2011, 17 (05) : 826 - 828
  • [5] Optimising prophylaxis in haemophilia A: The ups and downs of treatment
    Berntorp, Erik
    Hermans, Cedric
    Solms, Alexander
    Poulsen, Lone
    Mancuso, Maria Elisa
    [J]. BLOOD REVIEWS, 2021, 50
  • [6] Assessments of pain, functional impairment, anxiety, and depression in US adults with hemophilia across patient-reported outcome instruments in the Pain, Functional Impairment, and Quality of Life (P-FiQ) study
    Buckner, Tyler W.
    Batt, Katharine
    Quon, Doris
    Witkop, Michelle
    Recht, Michael
    Kessler, Craig
    Baumann, Kimberly
    Hernandez, Grace
    Wang, Michael
    Cooper, David L.
    Kempton, Christine L.
    [J]. EUROPEAN JOURNAL OF HAEMATOLOGY, 2018, 100 : 5 - 13
  • [7] Pain, depression and anxiety in people with haemophilia from three Nordic countries: Cross-sectional survey data from the MIND study
    Carlsson, Katarina Steen
    Winding, Bent
    Astermark, Jan
    Baghaei, Fariba
    Brodin, Elisabeth
    Funding, Eva
    Holmstrom, Margareta
    Osterholm, Klaus
    Bergenstrale, Sofia
    Andersson, Emelie
    Lethagen, Stefan
    [J]. HAEMOPHILIA, 2022, 28 (04) : 557 - 567
  • [8] Haemophilia Experiences, Results and Opportunities (HERO) Study: Influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia
    Cassis, F. R. M. Y.
    Buzzi, A.
    Forsyth, A.
    Gregory, M.
    Nugent, D.
    Garrido, C.
    Pilgaard, T.
    Cooper, D. L.
    Iorio, A.
    [J]. HAEMOPHILIA, 2014, 20 (04) : e287 - e295
  • [9] Cohen J., 1988, Statistical power analysis for the behavioral sciences, V2nd
  • [10] LongHest project: A prospective, observational study of extended half-life treatment in the musculoskeletal health of patients with severe haemophilia A
    Cuesta-Barriuso, Ruben
    Perez-Llanes, Raul
    Donoso-Ubeda, Elena
    Ucero-Lozano, Roberto
    [J]. HAEMOPHILIA, 2022, 28 (05) : 857 - 864