Exploring patient reported quality of life in lung cancer patients: A qualitative study of patient-reported outcome measures.
PROM
QoL
lung cancer
patient‐centered care
patient‐reported outcome measures
quality of life
Journal
Asia-Pacific journal of clinical oncology
ISSN: 1743-7563
Titre abrégé: Asia Pac J Clin Oncol
Pays: Australia
ID NLM: 101241430
Informations de publication
Date de publication:
23 Mar 2024
23 Mar 2024
Historique:
revised:
28
02
2024
received:
30
05
2022
accepted:
07
03
2024
medline:
23
3
2024
pubmed:
23
3
2024
entrez:
23
3
2024
Statut:
aheadofprint
Résumé
Lung cancer is the leading cause of cancer-related death globally and provides a major disease burden likely to substantially impact quality of life (QoL). Patient-reported outcome measures (PROMs) have been identified as effective methods of evaluating patient QoL. Existing lung cancer-specific PROMs however have uncertain utility and minimal patient involvement in their design and development. This qualitative study aimed to evaluate the patient perspective of existing PROMs and to explore their appropriateness for population-based descriptions of lung cancer-related QoL. A descriptive qualitative study was conducted consisting of semi-structured interviews with 14 patients recruited from the Victorian Lung Cancer Registry and Alfred Hospital using purposive sampling. Interviews first explored the factors most important to lung cancer patients QoL, and second, patient's perspectives on the appropriateness of existing PROMs. Thematic analysis was used to develop themes, and content analysis was conducted to determine PROM acceptability. Five novel themes were identified by patients as being important impacts on QoL: Personal attitude toward the disease is important for coping; independence is valued; relationships with family and friends are important; relationships with treating team are meaningful; personal and public awareness of lung cancer is limited. These patient-identified impacts are poorly covered in existing lung cancer-specific PROMs. Patients welcomed and appreciated the opportunity to complete PROMs; however, they identified problems with existing PROMs relevance, tone, and formatting. Existing lung cancer PROMs poorly reflect the five themes identified in this study as most important to lung cancer patients QoL. This study reaffirms the need to review existing PROMs to ensure utility and construct validity. Future PROM development must engage key patient-generated themes and evolve to reflect the changing management and therapeutic landscape.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Informations de copyright
© 2024 The Authors. Asia‐Pacific Journal of Clinical Oncology published by John Wiley & Sons Australia, Ltd.
Références
Allemani C, Matsuda T, CONCORD Working Group. Global surveillance of trends in cancer survival: analysis of individual records for 37,513,025 patients diagnosed with one of 18 cancers during 2000–2014 from 322 population‐based registries in 71 countries (CONCORD‐3). Lancet. 2018;391(10125):1023‐1075.
Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018;68(6):394‐424.
Australian Institute of Health and Welfare & Cancer Australia. Lung cancer in Australia: an overview. Cancer series no. 64. Cat. no. CAN 58. AIHW; 2011.
Australian Government: Cancer Australia. Cancer research in Australia 2016 to 2018: opportunities for strategic research investment. Cancer Australia; 2016.
Ebrahim S. Clinical and public health perspectives and applications of health‐related quality of life measurement. Soc Sci Med. 1995;41(10):1383‐1394.
U.S. Department of Health and Human Services, Food and Drug Administration. Guidance for industry: patient‐reported outcome measures: use in medical product development to support labeling claims. Food and Drug Administration; 2009.
Williams K, Sansoni J, Morris D, Grootemaat P, Thompson C. Patient‐reported outcome measures: Literature review. ACSQHC; 2016.
Porter ME. What is value in health care? N Engl J Med. 2010;363:2477‐2481.
Awad AG. The patient’: at the center of patient‐reported outcomes. Expert Rev Pharmacoecon Outcomes Res. 2015;15(5):729‐731.
Basch E. Missing patients' symptoms in cancer care delivery–the importance of patient‐reported outcomes. JAMA Oncol. 2016;2(4):433‐434.
Fromme EK, Eilers KM, Mori M, Hsieh YC, Beer TM. How accurate is clinician reporting of chemotherapy adverse effects? A comparison with patient‐reported symptoms from the Quality‐of‐Life Questionnaire C30. J Clin Oncol. 2004;22(17):3485‐3490.
Weingart SN, Gandhi TK, Seger AC, Seger DL, Borus J, Burdick E, et al. Patient‐reported medication symptoms in primary care. Arch Intern Med. 2005;165(2):234‐240.
Pakhomov SV, Jacobsen SJ, Chute CG, Roger VL. Agreement between patient‐reported symptoms and their documentation in the medical record. Am J Managed Care. 2008;14(8):530‐539.
Atkinson TM, Li Y, Coffey CW, Sit L, Shaw M, Lavene D, et al. Reliability of adverse symptom event reporting by clinicians. Qual Life Res. 2012;21(7):1159‐1164.
Camuso N, Bajaj P, Dudgeon D, Mitera G. Engaging patients as partners in developing patient‐reported outcome measures in cancer—a review of the literature. Support Care Cancer. 2016;24(8):3543‐3549.
Australian Commission on Safety and Quality in Health Care. National Safety and Quality Health Service Standards. 1st ed. ACSQHC; 2012.
Harrop E, Noble S, Edwards M, Sivell S, Moore B, Nelson A. Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer. Sociol Health Illn. 2017;39(8):1448‐1464.
Wiering B, de Boer D, Delnoij D. Patient involvement in the development of patient‐reported outcome measures: the developers' perspective. BMC Health Serv Res. 2017;17(1):635.
Wiering B, de Boer D, Delnoij D. Patient involvement in the development of patient‐reported outcome measures: a scoping review. Health Expect. 2017;20(1):11‐23.
Bergman B, Aaronson NK, Ahmedzai S, Kaasa S, Sullivan M. The EORTC QLQ‐LC13: a modular supplement to the EORTC Core Quality of Life Questionnaire (QLQ‐C30) for use in lung cancer clinical trials. EORTC Study Group on Quality of Life. Eur J Cancer. 1994;30A(5):635‐642.
Koller M, Hjermstad MJ, Tomaszewski KA, et al. An international study to revise the EORTC questionnaire for assessing quality of life in lung cancer patients. Ann Oncol. 2017;28(11):2874‐2881.
Cella DF, Bonomi AE, Lloyd SR, Tulsky DS, Kaplan E, Bonomi P. Reliability and validity of the functional assessment of cancer therapy‐lung (FACT‐L) quality of life instrument. Lung Cancer. 1995;12(3):199‐220.
Hollen PJ, Gralla RJ, Kris MG, Potanovich LM. Quality of life assessment in individuals with lung cancer: testing the Lung Cancer Symptom Scale (LCSS). Eur J Cancer. 1993;29A(1):S51‐S58.
Mendoza TR, Wang XS, Lu C, et al. Measuring the symptom burden of lung cancer: the validity and utility of the lung cancer module of the M. D. Anderson Symptom Inventory. Oncologist. 2011;16(2):217‐227.
Creswell JW. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. 4th ed. SAGE Publications; 2014.
Liamputtong P. Qualitative Research Methods. 4th ed. Oxford University Press; 2013.
Hammarberg K, Kirkman M, de Lacey S. Qualitative research methods: when to use them and how to judge them. Human Reprod. 2016;31(3):498‐501.
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32‐iten checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349‐357.
Stirling RG, Evans SM, McLaughlin P, et al. The Victorian Lung Cancer Registry pilot: improving the quality of lung cancer care through the use of a disease quality registry. Lung. 2014;192(5):749‐758.
Petri S, Berthelsen CB. Lived experiences of everyday life during curative radiotherapy in patients with non‐small‐cell lung cancer: a phenomenological study. Int J Qual Stud Health Well‐being. 2015;10:29397.
Cinar D, Yildirim Y, Yesilbalkan OU, Pamuk A. Experiences of cancer patients: a qualitative study. Int J Caring Sci. 2018;11(2):1456‐1466.
Bertero C, Vanhanen M, Appelin G. Receiving a diagnosis of inoperable lung cancer: patients' perspectives of how it affects their life situation and quality of life. Acta Oncol. 2008;47(5):862‐869.
Rowland C, Danson SJ, Rowe R, et al. Quality of life, support and smoking in advanced lung cancer patients: a qualitative study. BMJ Support Palliat Care. 2016;6(1):35‐42.
Aumann I, Kreis K, Damm K, Golpon H, Welte T, Graf von der Schulenburg JM. Treatment‐related experiences and preferences of patients with lung cancer: a qualitative analysis. Health Expect. 2016;19(6):1226‐1236.
John LD. Self‐care strategies used by patients with lung cancer to promote quality of life. Oncol Nurs Forum. 2010;37(3):339‐347.
Rodriguez‐Prat A, Monforte‐Royo C, Porta‐Sales J, Escribano X, Balaguer A. Patient perspectives of dignity, autonomy and control at the end of life: systematic review and meta‐ethnography. PLoS ONE. 2016;11(3):e0151435.
Luszczynska A, Pawlowska I, Cieslak R, Knoll N, Scholz U. Social support and quality of life among lung cancer patients: a systematic review. Psycho‐Oncology. 2013;22(10):2160‐2168.
Tod AM, Craven J, Allmark P. Diagnostic delay in lung cancer: a qualitative study. J Adv Nurs. 2008;61(3):336‐343.
Dose AM, Rhudy LM. Perspectives of newly diagnosed advanced cancer patients receiving dignity therapy during cancer treatment. Support Care Cancer. 2018;26(1):187‐195.
Golden SE, Thomas CR Jr, Deffebach ME, et al. It wasn't as bad as I thought it would be: a qualitative study of early stage non‐small cell lung cancer patients after treatment. BMC Res Notes. 2017;10(1):642.
Villalobos M, Coulibaly K, Krug K, et al. A longitudinal communication approach in advanced lung cancer: a qualitative study of patients', relatives' and staff's perspectives. Eur J Cancer Care. 2018;27(2):e12794.
Australian Commission on Safety and Quality in Health Care. National Safety and Quality Health Service Standards. 2nd ed. ACSQHC; 2017.
Australian Commission on Safety and Quality in Health Care. Australian Safety and Quality Framework for Health Care. ACSQHC; 2010.
Lung Foundation Australia. Making lung cancer a fair fight: A blueprint for reform. Lung Foundation Australia; 2018.
Lehto RH. Patient views on smoking, lung cancer, and stigma: a focus group perspective. Eur J Oncol Nurs. 2014;18(3):316‐322.
Chambers SK, Baade P, Youl P, et al. Psychological distress and quality of life in lung cancer: the role of health‐related stigma, illness appraisals and social constraints. Psycho‐Oncology. 2015;24(11):1569‐1577.
Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. BMJ. 2004;328(7454):1470.
Looijmans M, Van Manen AS, Traa MJ, Kloover JS, Kessels BLJ, de Vries J. Psychosocial consequences of diagnosis and treatment of lung cancer and evaluation of the need for a lung cancer specific instrument using focus group methodology. Support Care Cancer. 2018;26(12):4177‐4185.
Mokkink LB, Terwee CB, Patrick DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010;19(4):539‐549.
Lincoln YS, Guba EG. Naturalistic Inquiry. Sage Publications; 1985.
Stirling R, Brand M, Scarborough R. The Victorian Lung Cancer Registry annual report, 2015. Department of Epidemiology and Preventative Medicine, Monash University; 2015.
Rothman ML, Beltran P, Cappelleri JC, Lipscomb J, TeschendorfB. Patient‐reported outcomes: conceptual issues. Value Health. 2007;10(Suppl 2):S66‐S75.
Wilson IB, Cleary PD. Linking clinical variables with health‐related quality of life. A conceptual model of patient outcomes. JAMA. 1995;273(1):59‐65.
Zubritsky C, Abbott KM, Hirschman KB, Bowles KH, Foust JB, Naylor MD. Health‐related quality of life: expanding a conceptual framework to include older adults who receive long‐term services and supports. Gerontologist. 2013;53(2):205‐210.