Skip to main content

Advertisement

SpringerLink
Log in

An organizational framework for patient-reported outcome instruments in dermatologic surgery: a systematic review and qualitative analysis

  • Review
  • Published:
Archives of Dermatological Research Aims and scope Submit manuscript

  • 1 Altmetric

Abstract

Patient-reported outcomes (PROs) describe measures of a patient’s experience throughout medical care as reported by the patient (Mercieca-Bebber et al. in Patient Relat Outcome Meas, 2018). Various PRO instruments exist. It is challenging to select appropriate instruments given the absence of an organizational framework which describes all measurable PROs in dermatologic surgery and represents which instruments measure which outcomes. Our objective was to systematically review all validated PRO instruments in dermatologic surgery and use qualitative analysis to develop an organizational framework representing PRO measures and instruments. PubMed/MEDLINE, Embase, CINAHL, PsycINFO, and Cochrane databases were searched to retrieve validated PRO instruments in the dermatologic surgery population. The constant comparative method of qualitative analysis was used to develop an organizational framework representing all PROs in dermatologic surgery. All instruments were sorted into this framework. The search identified 3195 articles; 35 validated instruments were extracted and qualitatively analyzed. The organizational framework sorted all instruments into 36 PRO measures aligned with the National Institutes of Health Patient-Reported Outcomes Measurement Information System (Gershon RC, Rothrock N, Hanrahan R, et al (2010) The use of PROMIS and assessment center to deliver patient-reported outcome measures in clinical research). Measures were grouped into four categories (expectations, satisfaction, quality of life, needs) describing how patients experience these outcomes and lenses through which researchers can evaluate them. In conclusion, we have proposed an organizational framework for use in choosing validated instruments to develop and answer PRO research questions.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

Data availability

The data supporting the findings of this study are available within the article and its supplementary materials.

References

  1. Mercieca-Bebber R, King MT, Calvert MJ et al (2018) The importance of patient-reported outcomes in clinical trials and strategies for future optimization. Patient Relat Outcome Meas. https://doi.org/10.2147/PROM.S156279

    Article  PubMed  PubMed Central  Google Scholar 

  2. Gershon RC, Rothrock N, Hanrahan R, et al (2010) The use of PROMIS and assessment center to deliver patient-reported outcome measures in clinical research

  3. Cano SJ, Klassen A, Pusic AL (2009) The science behind quality-of-life measurement: a primer for plastic surgeons. Plast Reconstr Surg 123:98e–106e

    Article  PubMed  Google Scholar 

  4. Hewitt-Taylor J (2001) Use of constant comparative analysis in qualitative research. Nursing Standard (through 2013) 15:39–42

    Article  CAS  Google Scholar 

  5. (2009) Oxford centre for evidence-based medicine levels of evidence (2009). Centre for evidence-based medicine (CEBM), University of Oxford

  6. Cella D, Tulsky D, Gray G, Harris J (1993) The functional assessment of cancer therapy scale: development and validation of the general measure. JCO. https://doi.org/10.1200/JCO.1993.11.3.57

    Article  Google Scholar 

  7. Finlay AY, Khan GK (1994) Dermatology life quality index (DLQI)—a simple practical measure for routine clinical use. Clin Exp Dermatol 19:210–216. https://doi.org/10.1111/j.1365-2230.1994.tb01167.x

    Article  CAS  PubMed  Google Scholar 

  8. Snaith RP (2003) The hospital anxiety and depression scale. Health Qual Life Outcomes 1:29. https://doi.org/10.1186/1477-7525-1-29

    Article  PubMed  PubMed Central  Google Scholar 

  9. Bergner M, Bobbitt RA, Pollard WE et al (1976) The sickness impact profile: validation of a health status measure. Med Care 14:57–67

    Article  CAS  PubMed  Google Scholar 

  10. Draaijers LJ, Tempelman FRH, Botman YAM et al (2004) The patient and observer scar assessment scale: a reliable and feasible tool for scar evaluation. Plast Reconstr Surg 113(7):1960–1965

    Article  PubMed  Google Scholar 

  11. Lee EH, Klassen AF, Nehal KS et al (2013) A systematic review of patient-reported outcome instruments of nonmelanoma skin cancer in the dermatologic population. J Am Acad Dermatol 69:e59-67. https://doi.org/10.1016/j.jaad.2012.09.017

    Article  PubMed  Google Scholar 

  12. Lee EB, Ford A, Clarey D et al (2021) patient outcomes and satisfaction after Mohs micrographic surgery in patients with nonmelanoma skin cancer. Dermatol Surg 47:1190–1194. https://doi.org/10.1097/DSS.0000000000003106

    Article  CAS  PubMed  Google Scholar 

  13. Chen P, Saha S, Hinsdale-Shouse M Mode Effect, Patient-Mix adjustment, and nonresponse analysis in the outpatient and ambulatory surgery consumer assessment of healthcare providers and systems (OAS CAHPS) survey

  14. Trani J-F, Babulal GM, Bakhshi P (2015) Development and validation of the 34-item disability screening questionnaire (DSQ-34) for use in low and middle income countries epidemiological and development surveys. PLoS ONE 10:e0143610

    Article  PubMed  PubMed Central  Google Scholar 

  15. Marshall GN, Hays RD (1994) The patient satisfaction questionnaire short-form (PSQ-18). Rand Santa Monica, CA

    Google Scholar 

  16. Cano SJ, Browne JP, Lamping DL et al (2006) The patient outcomes of surgery—head/neck (POS-head/neck): a new patient-based outcome measure. J Plast Reconstr Aesthet Surg 59:65–73

    Article  CAS  PubMed  Google Scholar 

  17. Goldstein E, Farquhar M, Crofton C et al (2005) Measuring hospital care from the patients’ perspective: An overview of the CAHPS® hospital survey development process. Health Serv Res 40:1977–1995

    Article  PubMed  PubMed Central  Google Scholar 

  18. Klassen AF, Cano SJ, Scott A et al (2010) Measuring patient-reported outcomes in facial aesthetic patients: development of the FACE-Q. Facial Plast Surg 26:303–309

    Article  CAS  PubMed  Google Scholar 

  19. Burdon-Jones D, Gibbons K (2013) The skin cancer quality of life impact tool (SCQOLIT): a validated health-related quality of life questionnaire for non-metastatic skin cancers. J Eur Acad Dermatol Venereol 27:1109–1113

    Article  CAS  PubMed  Google Scholar 

  20. Mori S, Lee EH (2019) Beyond the physician’s perspective: a review of patient-reported outcomes in dermatologic surgery and cosmetic dermatology. Int J Womens Dermatol 5:21–26. https://doi.org/10.1016/j.ijwd.2018.08.001

    Article  CAS  PubMed  Google Scholar 

  21. Gibbons E, Casa~Nas I Comabella C, Fitzpatrick R (2013) A structured review of patient-reported outcome measures for patients with skin cancer, 2013. Br J Dermatol. https://doi.org/10.1111/bjd.12310

    Article  PubMed  Google Scholar 

  22. Kavanagh KJ, Christophel JJ (2020) Development of a patient-reported outcome measure for Mohs reconstruction. Facial Plast Surg Aesthet Med 22:274–280. https://doi.org/10.1089/fpsam.2020.0036

    Article  PubMed  Google Scholar 

  23. Schlesinger-Raab A, Schubert-Fritschle G, Hein R et al (2010) Quality of life in localised malignant melanoma. Ann Oncol 21:2428–2435. https://doi.org/10.1093/annonc/mdq255

    Article  CAS  PubMed  Google Scholar 

  24. Rhee JS, Matthews BA, Neuburg M et al (2004) Skin cancer and quality of life: assessment with the dermatology life quality index. Dermatol Surg 30:525–529. https://doi.org/10.1111/j.1524-4725.2004.30169.x

    Article  PubMed  Google Scholar 

  25. Czajkowska Z Nonmelanoma skin cancer: disease-specific quality-of-life concerns and distress related papers unmet supportive care needs and distress in patients with non-melanoma skin cancer zofia czajkowska distress and coping strat egies among patients with skin cancer

  26. Blackford S, Roberts D, Finlay A (1996) Basal cell carcinomas cause little handicap. Qual Life Res. https://doi.org/10.1007/BF00434740

    Article  PubMed  Google Scholar 

  27. Derogatis LR (1986) The psychosocial adjustment to illness scale (PAIS). J Psychosom Res 30:77–91. https://doi.org/10.1016/0022-3999(86)90069-3

    Article  CAS  PubMed  Google Scholar 

  28. Weitemeyer MB, Bramsen P, Klausen TW et al (2018) Patient-and observer-reported long-term scar quality of wide local excision scars in melanoma patients. J Plast Surg Hand Surg 52:319–324. https://doi.org/10.1080/2000656X.2018.1493388

    Article  PubMed  Google Scholar 

  29. Newton-Bishop JA, Nolan C, Turner F et al (2004) A quality-of-life study in high-risk (Thickness X 2 mm) Cutaneous melanoma patients in a randomized trial of 1-cm versus 3-cm surgical excision margins. J Investig Dermatol Symp Proc. https://doi.org/10.1046/j.1087-0024.2003.09118.x

    Article  Google Scholar 

  30. Curran SL, Andrykowski MA, Studts JL (1995) Short form of the profile of mood states (POMS-SF): psychometric information. Psychol Assess 7:80

    Article  Google Scholar 

  31. Garreau JR, Faries M, Ye X, Morton D (2009) Mood state and melanoma outcome in the multicenter selective lymphadenectomy trial. J Clin Oncol 27:9603. https://doi.org/10.1200/jco.2009.27.15_suppl.9603

    Article  Google Scholar 

  32. Chren M-M, Lasek RJ, Quinn LM et al (1996) Skindex, a quality-of-life measure for patients with skin disease: reliability, validity, and responsiveness. J Investig Dermatol 107:707–713

    Article  CAS  Google Scholar 

  33. Rhee JS, Loberiza FR, Matthews BA et al (2003) Quality of life assessment in nonmelanoma cervicofacial skin cancer. Laryngoscope 113:215–220. https://doi.org/10.1097/00005537-200302000-00004

    Article  Google Scholar 

  34. Fayers P, Bottomley A, Group EQ of L (2002) Quality of life research within the EORTC—the EORTC QLQ-C30. Eur J Cancer 38:125–133

    Article  Google Scholar 

  35. Graf C (2008) The Lawton instrumental activities of daily living scale. AJN Am J Nurs 108:52–62

    Article  PubMed  Google Scholar 

  36. Garra G, Singer AJ, Taira BR et al (2010) Validation of the Wong-Baker FACES pain rating scale in pediatric emergency department patients. Acad Emerg Med 17:50–54

    Article  PubMed  Google Scholar 

  37. Firoz BF, Goldberg LH, Arnon O, Mamelak AJ (2010) An analysis of pain and analgesia after Mohs micrographic surgery. J Am Acad Dermatol 63:79–86. https://doi.org/10.1016/j.jaad.2009.10.049

    Article  Google Scholar 

  38. Boyes A, Girgis A, Lecathelinais C (2009) Brief assessment of adult cancer patients’ perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). J Eval Clin Pract 15:602–606

    Article  Google Scholar 

  39. Beesley VL, Smithers BM, Khosrotehrani K et al (2015) Supportive care needs, anxiety, depression and quality of life amongst newly diagnosed patients with localised invasive cutaneous melanoma in Queensland, Australia. Psychooncology 24:763–770. https://doi.org/10.1002/pon.3718

    Article  Google Scholar 

  40. Ruta DA, Hurst NP, Kind P et al (1998) Measuring health status in British patients with rheumatoid arthritis: reliability, validity and responsiveness of the short form 36-item health survey (SF-36). Br J Rheumatol 37:425–436

    Article  CAS  PubMed  Google Scholar 

  41. Morgan M, McCreedy R, Simpson J, Hay RJ (1997) Dermatology quality of life scales–a measure of the impact of skin diseases. Br J Dermatol 136:202–206

    CAS  PubMed  Google Scholar 

  42. Feldman S, Menter A, Koo A (2004) Improved health-related quality of life following a randomized controlled trial of alefacept treatment in patients with chronic plaque psoriasis. Br J Dermatol 150:317–326

    Article  CAS  PubMed  Google Scholar 

  43. Pena SM, Lawrence N (2017) Analysis of wait times and impact of real-time surveys on patient satisfaction. Dermatol Surg 43:1288–1291. https://doi.org/10.1097/DSS.0000000000001232

    Article  CAS  PubMed  Google Scholar 

  44. Greer S, Moorey S, Watson M (1989) Patients’ adjustment to cancer: the mental adjustment to cancer (MAC) scale vs clinical ratings. J Psychosom Res 33:373–377

    Article  CAS  PubMed  Google Scholar 

  45. Lee EH, Klassen AF, Cano SJ et al (2018) FACE-Q skin cancer module for measuring patient-reported outcomes following facial skin cancer surgery. Br J Dermatol 179:88–94. https://doi.org/10.1111/bjd.16671

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  46. Carr T, Moss T, Harris D (2005) The DAS24: a short form of the derriford appearance scale DAS59 to measure individual responses to living with problems of appearance. Br J Health Psychol 10:285–298

    Article  PubMed  Google Scholar 

  47. Bath-Hextall F, Jenkinson C, Kumar A et al (2013) Longitudinal, mixed method study to look at the experiences and knowledge of non melanoma skin cancer from diagnosis to one year. BMC Dermatol. https://doi.org/10.1186/1471-5945-13-13

    Article  PubMed  PubMed Central  Google Scholar 

  48. Rhee JS, Matthews BA, Neuburg M et al (2007) The skin cancer index: clinical responsiveness and predictors of quality of life. Laryngoscope 117:399–405

    Article  PubMed  PubMed Central  Google Scholar 

  49. Katz MR, Irish JC, Devins GM et al (2000) Reliability and validity of an observer-rated disfigurement scale for head and neck cancer patients. Head & Neck: J Sci Spec Head Neck 22:132–141

    Article  CAS  Google Scholar 

  50. Katz MR, Irish JC, Devins GM et al (2003) Psychosocial adjustment in head and neck cancer: the impact of disfigurement, gender and social support. Head Neck: J Sci Spec Head Neck 25:103–112

    Article  Google Scholar 

  51. Mendelson MJ, Mendelson BK, Andrews J (2000) Self-esteem, body esteem, and body-mass in late adolescence: Is a competence× importance model needed? J Appl Dev Psychol 21:249–266

    Article  Google Scholar 

  52. Harwood RH, Ebrahim S (2002) The validity, reliability and responsiveness of the Nottingham extended activities of daily living scale in patients undergoing total hip replacement. Disabil Rehabil 24:371–377

    Article  CAS  PubMed  Google Scholar 

  53. Pretzlaff K, West L, Nemeh MN et al (2022) Wound care quality of life in aging patients undergoing electrodessication and curettage on the back. Arch Dermatol Res 314:477–480

    Article  PubMed  Google Scholar 

  54. Mcgrouther D, Brown BC, McKenna SP et al (2009) Patient-reported impact of scars measure (PRISM): development and validation of a new skin scar patient-reported outcome measure. Br J Dermatol 161:17

    Google Scholar 

  55. Sobanko JF, Sarwer DB, Zvargulis Z, Miller CJ (2015) Importance of physical appearance in patients with skin cancer. Dermatol Surg 41:183–188

    Article  CAS  PubMed  Google Scholar 

  56. Bermueller C, Rettinger G, Keck T (2010) Auricular keloids: treatment and results. Eur Arch Otorhinolaryngol 267:575–580

    Article  PubMed  Google Scholar 

  57. Augustin M, Conde Montero E, Zander N et al (2017) Validity and feasibility of the wound-QoL questionnaire on health-related quality of life in chronic wounds. Wound Repair Regen 25:852–857

    Article  PubMed  Google Scholar 

  58. Ziaj S, Felton S, Matin RN (2020) Utility of the skin cancer quality of life impact tool in high-risk nonmelanoma skin cancers treated with Mohs micrographic surgery. Br J Dermatol 183:111–112. https://doi.org/10.1111/bjd.19096

    Article  Google Scholar 

  59. Essers B, Nieman F, Prins M et al (2007) Perceptions of facial aesthetics in surgical patients with basal cell carcinoma. J Eur Acad Dermatol Venereol 21:1209–1214. https://doi.org/10.1111/j.1468-3083.2007.02227.x

    Article  CAS  PubMed  Google Scholar 

  60. Vinding GR, Christensen KB, Esmann S et al (2013) Quality of life in non-melanoma skin cancer—the skin cancer quality of life (SCQ oL) questionnaire. Dermatol Surg 39:1784–1793

    Article  CAS  PubMed  Google Scholar 

  61. Rajabi-Estarabadi A, Williams NM, Tsang DC et al (2020) Ethnicity impact on skin cancer knowledge and quality of life in patients with skin cancer: a survey-based study of white Hispanics and white non-Hispanics. J Am Acad Dermatol 83:1170–1172

    Article  PubMed  Google Scholar 

  62. Kerrigan CL, Homa K (2009) Visual assessment of linear scars: a new tool. Plast Reconstr Surg 124:1513–1519

    Article  CAS  PubMed  Google Scholar 

  63. Collins LK, Knackstedt TJ, Ganger P et al (2017) Applying a visual assessment tool to facial linear scars. Facial Plast Surg 33:97–101. https://doi.org/10.1055/s-0036-1597684

    Article  CAS  PubMed  Google Scholar 

  64. Mathias SD, Chren MM, Crosby RD et al (2015) Reliability and validity of the advanced basal cell carcinoma index (aBCC dex). Br J Dermatol 173:713–719

    Article  CAS  PubMed  Google Scholar 

  65. Schadendorf D, Hauschild A, Fosko S et al (2020) Quality-of-life analysis with intermittent vismodegib regimens in patients with multiple basal cell carcinomas: patient-reported outcomes from the MIKIE study. J Eur Acad Dermatol Venereol 34:e526–e529

    Article  CAS  PubMed  Google Scholar 

  66. Beal BT, White EK, Behera AK et al (2018) A novel, disease-specific self-report instrument to measure body image concerns in patients with head and neck skin cancer. Dermatol Surg 44:17–24

    Article  CAS  PubMed  Google Scholar 

  67. Beal BT, White EK, Behera AK et al (2018) Patients’ body image improves after Mohs micrographic surgery for nonmelanoma head and neck skin cancer. Dermatol Surg 44:1380–1388

    Article  CAS  PubMed  Google Scholar 

  68. Massey PR, Wang R, Cadmus SD et al (2019) What do patients undergoing Mohs micrographic surgery want? Results of a patient values survey based on the outpatient and ambulatory surgery consumer assessments of healthcare providers and systems. J Am Acad Dermatol 80:1447–1449. https://doi.org/10.1016/j.jaad.2018.10.011

    Article  PubMed  Google Scholar 

  69. Buck D, Rawlani V, Wayne J et al (2012) Cosmetic outcomes following head and neck melanoma reconstruction: the patient’s perspective. Can J Plast Surg 20:e10–e15. https://doi.org/10.1177/229255031202000108

    Article  PubMed  PubMed Central  Google Scholar 

  70. Smith CB, Goldberg GR (2012) How should opioids be started and titrated in hospital or inpatient settings? Evidence-Based Pract Palliat Med. https://doi.org/10.1016/B978-1-4377-3796-7.00002-1

    Article  Google Scholar 

  71. van Loo E, Westerveld G, Nelemans PJ, Kelleners-Smeets NWJ (2021) Pain in dermatologic surgery: a prospective quantitative study. J Am Acad Dermatol 84:536–538. https://doi.org/10.1016/j.jaad.2020.05.019

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

We thank Dr. Claire Snyder, PhD, for her generous review of our project and for sharing her expertise in patient-reported outcomes. Dr. Snyder was not compensated for her time.

Author information

Authors and Affiliations

  1. Department of Dermatology, Johns Hopkins University School of Medicine, 733 N Broadway, Baltimore, MD, 21287, USA

    Divya Manoharan, Katherine G. Thompson & Jeffrey F. Scott

  2. University of Maryland School of Medicine, Baltimore, MD, USA

    Davies Gage

  3. Clinical Skin Center of Northern Virginia, Fairfax, VA, USA

    Jeffrey F. Scott

Authors
  1. Divya Manoharan
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Katherine G. Thompson
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Davies Gage
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jeffrey F. Scott
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

DM, KT, and JS wrote the main manuscript text. All authors reviewed the manuscript.

Corresponding author

Correspondence to Divya Manoharan.

Ethics declarations

Conflict of interest

The authors report no conflicts of interest or specific funding relevant to this work. There was no funding for this work. The work did not require IRB approval.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 29 KB)

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Manoharan, D., Thompson, K.G., Gage, D. et al. An organizational framework for patient-reported outcome instruments in dermatologic surgery: a systematic review and qualitative analysis. Arch Dermatol Res 316, 15 (2024). https://doi.org/10.1007/s00403-023-02738-8

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s00403-023-02738-8

Keywords

Search

Navigation