Patient-reported outcomes measure for patients with cleft palate

被引:0
|
作者
Xia, Wenbo [1 ,2 ,3 ]
Du, Meijun [1 ,2 ,3 ]
Wu, Min [1 ,2 ,3 ]
Chen, Zehua [1 ,2 ,3 ]
Yang, Renjie [2 ,4 ,5 ]
Shi, Bing [1 ,2 ,3 ]
Huang, Hanyao [1 ,2 ,3 ]
机构
[1] Sichuan Univ, West China Hosp Stomatol, State Key Lab Oral Dis, Chengdu, Peoples R China
[2] Sichuan Univ, West China Hosp Stomatol, Natl Clin Res Ctr Oral Dis, Chengdu, Peoples R China
[3] Sichuan Univ, West China Hosp Stomatol, Dept Oral & Maxillofacial Surg, Chengdu, Peoples R China
[4] Sichuan Univ, West China Hosp Stomatol, State Key Lab Oral Dis, Chengdu, Peoples R China
[5] Sichuan Univ, West China Hosp Stomatol, Eastern Clin, Chengdu, Peoples R China
基金
中国博士后科学基金; 中国国家自然科学基金;
关键词
quality of life; cleft palate; patient-reported outcomes measure; velopharyngeal insufficiency; patient perception; QUALITY-OF-LIFE; INFORMAL CAREGIVERS; BERLIN QUESTIONNAIRE; SLEEP QUESTIONNAIRE; CARERQOL-INSTRUMENT; ASSESSMENT SCALE; CEREBRAL-PALSY; STOP-BANG; VALIDATION; VALIDITY;
D O I
10.3389/fpubh.2024.1469455
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Cleft palate presents multifaceted challenges impacting speech, hearing, appearance, and cognition, significantly affecting patients' quality of life (QoL). While surgical advancements aim to restore function and improve appearance, traditional clinical measures often fail to comprehensively capture patients' experiences. Patient-reported outcomes measure (PROMs) have emerged as crucial tools in evaluating QoL, offering insights into various aspects such as esthetic results, speech function, and social integration. This review explores PROMs relevant to cleft palate complications, including velopharyngeal insufficiency, oronasal fistulas, maxillary hypoplasia, sleep-disordered breathing, and caregiver QoL. Additionally, the review highlights the need for cleft palate-specific scales to better address the unique challenges faced by patients. By incorporating PROMs, healthcare providers can achieve more personalized, patient-centered care, improve communication, and enhance treatment outcomes. Future research should focus on developing and validating specialized PROMs to further refine patient assessments and care strategies.
引用
收藏
页数:9
相关论文
共 50 条
  • [1] Developing a Patient-Reported Outcome Measure for Cleft-Lip and/or Palate Patients
    Klassen, Anne
    Goodacre, Tim
    Wong, Karen
    Pusic, Andrea
    Cano, Stefan
    Tsangaris, Elena
    Johnson, Jessica
    Lawson, Jessica
    Syed, Iqra
    Kainth, Sonika
    Dua, Meghna
    Forrest, Christopher
    QUALITY OF LIFE RESEARCH, 2012, 20 : 34 - 35
  • [2] Patient-Reported Esthetic Outcomes Following Secondary Rhinoplasty in Adult Patients with a Cleft lip and Palate
    Homsy, Pauliina
    Grann, Annemari
    Lassus, Patrik
    CLEFT PALATE CRANIOFACIAL JOURNAL, 2024,
  • [3] Measuring Quality of Life in Cleft Lip and Palate Patients: Currently Available Patient-Reported Outcomes Measures
    Eckstein, Donna A.
    Wu, Rebecca L.
    Akinbiyi, Takintope
    Silver, Lester
    Taub, Peter J.
    PLASTIC AND RECONSTRUCTIVE SURGERY, 2011, 128 (05) : 518E - 526E
  • [4] Measuring Quality of Life in Cleft Lip and Palate Patients: Currently Available Patient-Reported Outcomes Measures
    Sell, Debbie
    Sweeney, Triona
    Harding-Bell, Anne
    John, Alex K.
    PLASTIC AND RECONSTRUCTIVE SURGERY, 2012, 130 (06) : 888E - 888E
  • [5] Patient-reported outcomes in Irish adolescents who were born with cleft lip and palate
    Nolan, K.
    Macauley, Y.
    Byrne, S.
    de Blacam, C.
    SURGEON-JOURNAL OF THE ROYAL COLLEGES OF SURGEONS OF EDINBURGH AND IRELAND, 2025, 23 (01): : 33 - 37
  • [6] Discussion: Measuring Quality of Life in Cleft Lip and Palate Patients: Currently Available Patient-Reported Outcomes Measures
    Gosain, Arun K.
    Chim, Harvey
    PLASTIC AND RECONSTRUCTIVE SURGERY, 2011, 128 (05) : 527E - 528E
  • [7] Immediate Impact of a Patient-Reported Outcome Measure Visual Dashboard on Cleft lip and Palate Care Provision
    Bushman, Nicolette T.
    Nguyen, Tyler
    Incorvia, Joseph
    Meara, John G.
    Ganske, Ingrid M.
    Rogers-Vizena, Carolyn
    CLEFT PALATE CRANIOFACIAL JOURNAL, 2024,
  • [8] Long-Term Patient-Reported Outcomes in Internationally Adopted Children with Cleft Lip and Palate
    Salinero, Lauren K.
    Ahluwalia, Vinayak S.
    Barrero, Carlos E.
    Wagner, Connor S.
    Pontell, Matthew E.
    Magee, Leanne
    Low, David W.
    Jackson, Oksana A.
    Napoli, Joseph A.
    Bartlett, Scott P.
    Swanson, Jordan
    Taylor, Jesse A.
    CLEFT PALATE CRANIOFACIAL JOURNAL, 2025, 62 (01): : 44 - 50
  • [9] Patient-Reported Outcomes as a Measure of Healthcare Quality
    Frosch, Dominick L.
    JOURNAL OF GENERAL INTERNAL MEDICINE, 2015, 30 (10) : 1383 - 1384
  • [10] Patient-Reported Outcomes as a Measure of Healthcare Quality
    Dominick L. Frosch
    Journal of General Internal Medicine, 2015, 30 : 1383 - 1384