Abstract
Functioning is recognized increasingly as an important study outcome with head and neck cancer (HNC). The International Classification of Functioning, Disability and Health, as adopted by the World Health Organization in 2001, is based on a comprehensive bio-psycho-social view. The objective of this study was to evaluate functioning from the patient perspective and to classify the results using the comprehensive view of the ICF. Patients with HNC were interviewed on their problems in daily life using qualitative methodology. Sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. All individual interviews were digitally recorded and transcribed verbatim. Interview texts were divided into meaning units and the concepts contained in the meaning units were linked to the ICF according to established linking rules. The transcribed data were analyzed and linked by a second health professional and the degree of consensus was calculated using kappa statistics. Concordance of identified ICF categories among different tumor locations was also measured with kappa statistics. Until saturation was reached, 18 patients were interviewed: seven patients with oral cancer, five with hypopharyngeal cancer and six with laryngeal cancer. Thousand four hundred and sixty-two (1,462) different concepts were translated into the ICF using 104 different, second-level ICF categories. These ICF categories are presented in detail. From the patient perspective, the ICF components (a) Body functions, (b) Activities and participation and (c) contextual Environmental factors are equally represented, while (d) Body structures show by far the least number of categories. The concordance between different tumor locations rages between 0.53 and 0.58 (confidence interval 0.42–0.70). The degree of consensus in the linking process was 0.58 (confidence interval 0.45–0.73). The ICF classification can display problems with functioning following HNC sufficiently. For patients with HNC Body functions, Activities and participation in every-day life and contextual Environmental factors are equally relevant. Therefore, rehabilitation of these patients must not confine itself to anatomical and (patho-) physiologic changes, but should move towards a more comprehensive view including the individual patient’s demands on daily life and the given individual contextual circumstances.
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Abbreviations
- ICF:
-
International Classification of Functioning, Disability and Health
- WHO:
-
World Health Organization
- MPH:
-
Master of Public Health
References
D’Antonio L, Zimmermann G, Cella D et al (1996) Quality of life and functional status measures in patients with head and neck cancer. Arch Otolaryngol Head Neck Surg 122:482–487
Aaronson NKBJ (ed) (1986) The quality of life in cancer patients. EORTC study group on quality of life. J Psychosoc Oncol 4:43–53. doi:10.1300/J077v04n04_04
Rogers SN, Humphris G, Lowe D et al (1998) The impact of surgery for oral cancer on quality of life as measured by the Medical Outcomes Short Form 36. Oral Oncol 34(3):171–179
Ringash J, Bezjak A (2001) A structured review of quality of life instruments for head and neck cancer patients. Head Neck 23:201–213. doi:10.1002/1097-0347(200103)23:3<201::AID-HED1019>3.0.CO;2-M
Rogers S, Fisher S, Woolgar J (1999) A review of quality of life assessment in oral cancer. Int J Oral Maxillofac Surg 28:99–117. doi:10.1016/S0901-5027(99)80201-X
Morton R, Witterick I (1995) Rationale and development of a quality of life instrument for head and neck cancer patients. Am J Otolaryngol 16:284–293. doi:10.1016/0196-0709(95)90055-1
Bjordal K, Hammerlid E, Ahlner-Elmquist M et al (1999) Quality of life in head and neck cancer patients: validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-H&N35. J Clin Oncol 17:1008–1019
List M, Siston A, Haraf D et al (1999) Quality of life and performancein advanced haed neck cancer patients on con comittant chemoradiotherapy: a pospective examination. J Clin Oncol 17:1020–1028
Üstün B, Chatterji S, Kostanjsek N (2004) Comments from WHO for the Journal of Rehabilitation Medicine special supplement on ICF Core Sets. J Rehabil Med (44 Suppl):7–8
World Health Organization (1993) Rehabilitation after cardiovascular diseases, with special emphasis on developing countries. Report of WHO expert committee. WHO, Geneva
World Health Organization (2001) ICF—International Classification of Functioning, Disability and Health. WHO, Geneva
Nagi S (1964) A study in the evaluation of disability and rehabilitation potential: concepts, methods and procedures. Am J Public Health 54:1568–1579
Stucki G, Cieza A, Ewert T et al (2002) Application of the International Classification of Functioning, Disability and Health (ICF) in clinical practice. Disabil Rehabil 24:281–282. doi:10.1080/09638280110105222
Stucki G, Ewert T, Cieza A (2002) Value and application of the ICF in rehabilitation medicine. Disabil Rehabil 24:932–938. doi:10.1080/09638280210148594
Carr M, Schmidbaur J, Majaess L et al (2000) Communication after laryngectomy: an assessment of quality of life. Otolaryngol Head Neck Surg 122:39–43. doi:10.1016/S0194-5998(00)70141-0
Slevin M, Stubbs L, Plant HJ et al (1990) Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. BMJ 300(6737):1458–1460
Mohide E, Archibald S, Tew M et al (1992) Postlaryngectomy quality-of-life dimensions identified by patients and health care professionals. Am J Surg 164:619–622. doi:10.1016/S0002-9610(05)80720-2
Otto R, Dobie R, Lawrence V et al (1997) Impact of laryngectomy of quality of life: perspective of patients versus health care providers. Ann Otol Rhinol Laryngol 106:693–699
Kvale S (1996) Interviews—an introduction to qualitative research interviewing. Sage, Newsbury Park
Patton MQ (1990) Qualitative evaluation and research methods. Sage, Newsbury Park
Hayhow R, Stewart T (2006) Introduction to qualitative research and its application to stuttering. Int J Lang Commun Disord 41:475–493. doi:10.1080/13682820500343057
Mays NPC (2000) Qualitative research in health care: assessing quality in qualitative research. BMJ 320:50–52. doi:10.1136/bmj.320.7226.50
Giacomini MK, Cook DJ (2000) Users’ guides to the medical literature: XXIII. Qualitative research in health care A. Are the results of the study valid? Evidence-Based Medicine Working Group. JAMA 284:357–362. doi:10.1001/jama.284.3.357
Murphy EDR, Greatbatch D, Parker S, Watson P (1998) Qualitative research methods in health technology assessment: a review of the literature. Health Technol Assess 2(16):iii–ix:1–274
Witt H (2001) Research strategies in quantitative and qualitative social research. Qualitative Social Research 2. http://qualitative-research.net/fqs/fqs.htm. Accessed 12 July 2007
Coenen MCA, Stamm TA, Amann E, Kollerits B, Stucki G (2006) Validation of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis from the patient perspective using focus groups. Arthritis Res Ther 8(4):R84
Stamm T, Cieza A, Coenen M et al (2005) Validating the International classification of functioning disability and healthcomprehensive ICF core set for rheumatoid arthritis from the patient perspective: a qualitative study. Arthritis Rheum 53:431–439
Jones K (2002) The turn to a narrative knowing of persons: one method explored. Nursing Times Research 2002:1–11. http://www.angelfirecom/zine/kipworld/The_turnpdf
Krueger R, Casey M (2000) Focus groups: a practical guide for applied research. Sage, Thousand Oaks
Depoy EGL (1998) Introduction to research: understanding and applying various strategies, 2nd edn. C.V. Mosby, St Louis
Karlsson G (1995) Psychological qualitative research from a phenomenological perspective. Almquist and Wiskell International, Stockholm
Cieza A, Brockow T, Ewert T et al (2002) Linking health-status measurements to the International Classification of Functioning, Disability and Health. J Rehabil Med 34:205–210. doi:10.1080/165019702760279189
Cieza A, Geyh S, Chatterji S et al (2005) ICF linking rules: an update based on lessons learned. J Rehabil Med 37:212–218. doi:10.1080/16501970510040263
Cohen J (1960) A coefficient of agreement for nominal scales. Educ Psychol Meas 20:37–46. doi:10.1177/001316446002000104
Vierkant RA A SAS macro for calculating bootstrapped confidence intervals about a kappa coefficient. http://www2sascom/proceedings/sugi22/STATS/PAPER295PDF
Denzin N (1978) The research act: a theoretical introduction to sociological methods. McGraw-Hill, New York
Barbour R (2001) Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ 322:1115–1117. doi:10.1136/bmj.322.7294.1115
Pope CZS, Mays N (2000) Qualitative research in health care: analysing qualitative data. BMJ 320:114–116. doi:10.1136/bmj.320.7227.114
Landis J, Koch G (1977) The measurement of observer agreement for categorial data. Biometrics 33:159–174. doi:10.2307/2529310
Karnell L, Christensen A, Rosenthal E et al (2007) Influence of social support on health-related quality of life outcomes in head and neck cancer. Head Neck 29:143–146. doi:10.1002/hed.20501
Vartanian J, Carvalho A, Yueh B et al (2004) Long term quality-of-life evaluation after head and neck cancer treatment in a developing country. Arch Otolaryngol Head Neck Surg 130:1209–1213. doi:10.1001/archotol.130.10.1209
Bjordal K, Kaasa S, Mastekaasa A (1994) Quality of life in patients treated for head and neck cancer: a follow-up study 7 to 11 years after radiotherapy. Int J Radiat Oncol Biol Phys 28:847–856
Funk G, Karnell L, Smith R et al (2004) Clinical significance of health status assessment measures in head and neck cancer. Arch Otolaryngol Head Neck Surg 130:825–829. doi:10.1001/archotol.130.7.825
Armstrong E, Isman K, Dooley P et al (2001) An investigation into quality of life of individuals after laryngectomy. Head Neck 23:16–24. doi:10.1002/1097-0347(200101)23:1<16::AID-HED3>3.0.CO;2-4
Brockow T, Duddeck K, Geyh S et al. (2004) Identifying concepts contained in outcome measures of clinical trials on breast cancer using the ICF as a reference. J Rehabil Med (Suppl 44):43–48. doi:10.1080/16501960410015434
Brockow T, Wohlfahrt K, Hillert A et al. (2004) Identifying the concepts contained in outcome measues of clinical trials on depressive disorders using the ICF. J Rehabil Med (44 Suppl):49–55. doi:10.1080/16501960410015380
World Health Organization (2008) History of the ICD. www.who.int/classifications/icd/en/index. Retrieved May 2008
Morton RP, Izzard ME (2003) Quality of life outcomes in head and neck cancer patients. World J Surg 27:884–889. doi:10.1007/s00268-003-7117-2
Dhillon R, Palmer B, Pittam M et al (1982) Rehabilitation after major head and neck surgery—the patients view. Clin Otolaryngol 7(5):319–324
Greve W, Wentura D (1997) Wissenschaftliche Beobachtung: Eine Einführung. PVU/Beltz, Weinheim
Morgan DL (1997) Focus groups as qualitative research, 2nd edn. Sage, Thousand Oaks
Curtis SGW, Smith G, Washburn S (2000) Approaches to sampling and case selection in qualitative research: examples in the geography of health. Soc Sci Med 50:1001–1014. doi:10.1016/S0277-9536(99)00350-0
Knodel J (1993) The design and analysis of focus group studies. In: Morgan DL (ed) Successful focus groups: advancing the state of the art. Sage, Newbury Park, pp 35–50
Weymuller EA Jr, Bhama P (2007) Quality of life in head and neck cancer patients. Expert Rev Anticancer Ther 7:1175–1178. doi:10.1586/14737140.7.9.1175
Rogers SN, Thomson R, O’Toole P et al (2007) Patients experience with long-term percutaneous endoscopic gastrostomy feeding following primary surgery for oral and oropharyngeal cancer. Oral Oncol 43:499–507. doi:10.1016/j.oraloncology.2006.05.002
Stucki G, Grimby G (2004) Applying the ICF in medicine. J Rehabil Med (44 Suppl):5–6
Cieza A, Ewert T, Üstün B et al. (2004) Development of ICF Core Sets for patients with chronic conditions. J Rehabil Med (44 Suppl):9–11
Tschiesner U, Cieza A, Rogers S et al (2007) Developing Core Sets for patients with head and neck cancer based on the International Classification of Functioning, Disability and Health (ICF). Eur Arch Otorhinolaryngol 264:1215–1222. doi:10.1007/s00405-007-0335-8
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The project is funded by the Deutsche Krebshilfe e.V. The project is a cooperative effort with the World Health Organization.
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Tschiesner, U., Linseisen, E., Coenen, M. et al. Evaluating sequelae after head and neck cancer from the patient perspective with the help of the International Classification of Functioning, Disability and Health. Eur Arch Otorhinolaryngol 266, 425–436 (2009). https://doi.org/10.1007/s00405-008-0764-z
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DOI: https://doi.org/10.1007/s00405-008-0764-z