Skip to main content
Mijn bibliotheek
Shop
Nieuws Boeken Tijdschriften E-learning Web-tv Video Audio
Tips voor Mijn BSL
UITGEBREID ZOEKEN
Inloggen
Top
Quality of Life Research
Gepubliceerd in: Quality of Life Research 6/2015

01-06-2015

Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis

Auteurs: Jonathan Paul Singer, Joan Chen, Patricia P. Katz, Paul David Blanc, Marjorie Kagawa-Singer, Anita L. Stewart

Gepubliceerd in: Quality of Life Research | Uitgave 6/2015

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

Abstract

Purpose

Health-related quality of life (HRQL) domains vary across disease conditions and are determined by standards, values, and priorities internal to patients. Although the clinical goals of lung transplantation are to improve patient survival and HRQL, what defines HRQL in lung transplantation is unknown. Employing a qualitative approach, we aimed to identify HRQL domains important in lung transplantation.

Methods

We conducted semi-structured interviews in purposefully sampled lung transplant recipients (n = 8) representing a spectrum of ages, gender, indications for transplantation, and time since transplantation as well as healthcare practitioners representing a spectrum of practitioner types (n = 9). Grounded theory was used to identify HRQL domains important in lung transplantation, building on but going beyond domains already defined in the SF-36, the most commonly used instrument in this population.

Results

In addition to confirming the relevance of the eight SF-36 domains, we identified 11 novel HRQL domains. Palliation of respiratory symptoms was identified as important. After transplant surgery, new HRQL domains emerged including: distressing symptoms spanning multiple organ systems, worry about infection and acute rejection, treatment burden, and depression. Further, patients identified challenges to intimacy, changes in social relationships, and problems with cognitive functioning. Saliently, worry about limited life expectancy was pervasive and impaired life planning.

Conclusions

We found that HRQL in lung transplantation is defined by both generic and transplant-specific domains. Delineating and refining these domains can inform efforts to improve clinical outcomes and HRQL measurement in lung transplantation.
vorige artikel The Dutch Shoulder Pain and Disability Index (SPADI): a reliability and validation study
volgende artikel The potential for a generally applicable mapping model between QLQ-C30 and SF-6D in patients with different cancers: a comparison of regression-based methods
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
Yusen, R. D., Christie, J. D., Edwards, L. B., Kucheryavaya, A. Y., Benden, C., Dipchand, A. I., et al. (2013). The registry of the International society for heart and lung transplantation: Thirtieth adult lung and heart-lung transplant report—2013. Journal of Heart and Lung Transplantation, 32(10), 965–978.PubMedCrossRef
2.
Abecassis, M., Bridges, N. D., Clancy, C. J., Dew, M. A., Eldadah, B., Englesbe, M. J., et al. (2012). Solid-organ transplantation in older adults: Current status and future research. American Journal of Transplantation, 12(10), 2608–2622.PubMedCentralPubMedCrossRef
3.
Arcasoy, S. M., & Wilt, J. (2006). Medical complications after lung transplantation. Seminars in Respiratory and Critical Care Medicine, 27(5), 508–520.PubMedCrossRef
4.
McDowell, I. (2006). Measuring health: A guide to rating scales and questionnaires (3rd ed., p. 768). New York: Oxford University Press.CrossRef
5.
6.
Patrick, D. L., et al. (2011). Content validity—Establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 1—Eliciting concepts for a new PRO instrument. Value in Health, 14(8), 967–977.PubMedCrossRef
7.
8.
9.
Singer, J. P., et al. (2013). A thematic analysis of quality of life in lung transplant: the existing evidence and implications for future directions. American Journal of Transplantation, 13(4), 839–850.PubMedCentralPubMedCrossRef
10.
Stewart, A. L., & Ware, J. E., Jr. (1992). Measuring functioning and well-being: The medical outcomes study approach. Durkam: Duke University Press.
11.
Ware, J. E, Jr, & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.PubMedCrossRef
12.
13.
Tong, A., et al. (2013). Qualitative research in organ transplantation: Recent contributions to clinical care and policy. American Journal of Transplantation, 13(6), 1390–1399.PubMedCrossRef
14.
Charmaz, K. (2003). Grounded theory: Objectivist and constructivist methods. Strategies for qualitative inquiry (2nd ed.). Thousand Oaks: Sage.
15.
Charmaz, K. (2006). Constructing grounded theory. Thousand Oaks: Sage. xiii, p. 208.
16.
Hays, R. D., et al. (1994). Development of the kidney disease quality of life (KDQOL) instrument. Quality of Life Research, 3(5), 329–338.PubMedCrossRef
17.
Patton, M. Q. (2002). Qualitative research and evaluation methods, 3rd ed. Thousand Oaks: Sage. xxiv, 598, p. 65.
18.
Singer, J. P., et al. (2014). Development and validation of a lung transplant-specific disability questionnaire. Thorax, 69(5), 445–450.CrossRef
19.
Katz, P. P., et al. (2011). Development and validation of a short form of the valued life activities disability questionnaire for rheumatoid arthritis. Arthritis Care and Research, 63(12), 1664–1671.PubMedCentralPubMedCrossRef
20.
Stewart, A. L., Hays, R. D., & Ware, J. E., Jr. (1988). The MOS short-form general health survey. Reliability and validity in a patient population. Medical Care, 26(7), 724–735.PubMedCrossRef
21.
Brod, M., Tesler, L. E., & Christensen, T. L. (2009). Qualitative research and content validity: Developing best practices based on science and experience. Quality of Life Research, 18(9), 1263–1278.PubMedCrossRef
22.
Bryant, A., & Charmaz, K. (2007). The Sage handbook of grounded theory (p. 623). London: Sage.
23.
Strauss, A., Strauss, A. L., & Corbin, J. M. (1997). Grounded theory in practice (p. 280). Thousand Oaks: Sage.
24.
Cutcliffe, J. R. (2000). Methodological issues in grounded theory. Journal of Advanced Nursing, 31(6), 1476–1484.PubMedCrossRef
25.
Ralph, A., et al. (2014). Family perspectives on deceased organ donation: Thematic synthesis of qualitative studies. American Journal of Transplantation, 14(4), 923–935.PubMedCrossRef
26.
Anthony, S. J., et al. (2009). Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. American Journal of Transplantation, 9(3), 614–619.PubMedCrossRef
27.
Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82.CrossRef
28.
Kugler, C., et al. (2007). Symptom experience after lung transplantation: impact on quality of life and adherence. Clinical Transplantation, 21(5), 590–596.PubMedCrossRef
29.
Lanuza, D. M., et al. (1999). Symptom experiences of lung transplant recipients: Comparisons across gender, pretransplantation diagnosis, and type of transplantation. Heart and Lung, 28(6), 429–437.PubMedCrossRef
30.
Lanuza, D. M., et al. (2012). A longitudinal study of patients’ symptoms before and during the first year after lung transplantation. Clinical Transplantation, 26(6), E576–E589.PubMedCentralPubMedCrossRef
31.
Dew, M. A., et al. (2012). Onset and risk factors for anxiety and depression during the first 2 years after lung transplantation. General Hospital Psychiatry, 34(2), 127–138.PubMedCentralPubMedCrossRef
32.
DeVito Dabbs, A., et al. (2013). Quality of recipient–caregiver relationship and psychological distress are correlates of self-care agency after lung transplantation. Clinical Transplantation, 27(1), 113–120.PubMedCrossRef
33.
34.
Myaskovsky, L., et al. (2012). Predictors and outcomes of health-related quality of life in caregivers of cardiothoracic transplant recipients. American Journal of Transplantation, 12(12), 3387–3397.PubMedCentralPubMedCrossRef
35.
Allen, J. G., et al. (2011). Insurance status is an independent predictor of long-term survival after lung transplantation in the United States. Journal of Heart and Lung Transplantation, 30(1), 45–53.PubMedCrossRef
36.
Ashing-Giwa, K. T., et al. (2004). Understanding the breast cancer experience of women: A qualitative study of African American, Asian American, Latina and Caucasian cancer survivors. Psycho-Oncology, 13(6), 408–428.PubMedCentralPubMedCrossRef
37.
Clark, J. A., et al. (2003). Measuring patients’ perceptions of the outcomes of treatment for early prostate cancer. Medical Care, 41(8), 923–936.PubMedCrossRef
38.
Coates, A., et al. (1983). On the receiving end—Patient perception of the side-effects of cancer chemotherapy. European Journal of Cancer and Clinical Oncology, 19(2), 203–208.PubMedCrossRef
39.
Reeve, B. B. et al. (2014). Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials. Journal of the National Cancer Institute, 106(7), 1−8.
40.
Tchen, N., et al. (2003). Cognitive function, fatigue, and menopausal symptoms in women receiving adjuvant chemotherapy for breast cancer. Journal of Clinical Oncology, 21(22), 4175–4183.PubMedCrossRef
41.
Ganz, P. A., et al. (1998). Life after breast cancer: Understanding women’s health-related quality of life and sexual functioning. Journal of Clinical Oncology, 16(2), 501–514.PubMed
42.
Orens, J. B., et al. (2006). International guidelines for the selection of lung transplant candidates: 2006 update—A consensus report from the Pulmonary Scientific Council of the International Society for Heart and Lung Transplantation. Journal of Heart and Lung Transplantation, 25(7), 745–755.PubMedCrossRef
43.
Egan, T. M., et al. (2006). Development of the new lung allocation system in the United States. American Journal of Transplantation, 6(5 Pt 2), 1212–1227.PubMedCrossRef
44.
Malterud, K. (2001). Qualitative research: Standards, challenges, and guidelines. The Lancet, 358(9280), 483–488.CrossRef
45.
Doward, L. C., & McKenna, S. P. (2004). Defining patient-reported outcomes. Value in Health, 7(Suppl 1), S4–S8.PubMedCrossRef
46.
Eskander, A. et al. (2011). BODE index and quality of life in advanced chronic obstructive pulmonary disease before and after lung transplantation. The Journal of Heart and Lung Transplantation, 30(12), 1334–1341.
47.
Thabut, G., & Fournier, M. (2011). Assessing survival benefits from lung transplantation. Revue des Maladies Respiratoires, 28(6), e1–e6.PubMedCrossRef
48.
Yusen, R. D. (2009). Lung transplantation outcomes: the importance and inadequacies of assessing survival. American Journal of Transplantation, 9(7), 1493–1494.PubMedCrossRef
49.
Benzo, R., et al. (2009). Integrating health status and survival data: The palliative effect of lung volume reduction surgery. American Journal of Respiratory and Critical Care Medicine, 180(3), 239–246.PubMedCentralPubMedCrossRef
50.
Abbey, S. E., et al. (2011). Qualitative interviews vs standardized self-report questionnaires in assessing quality of life in heart transplant recipients. Journal of Heart and Lung Transplantation, 30(8), 963–966.PubMed
51.
Magasi, S., et al. (2012). Content validity of patient-reported outcome measures: Perspectives from a PROMIS meeting. Quality of Life Research, 21(5), 739–746.PubMedCrossRef
52.
53.
DeVito Dabbs, A., et al. (2009). Evaluation of a hand-held, computer-based intervention to promote early self-care behaviors after lung transplant. Clinical Transplantation, 23(4), 537–545.PubMedCrossRef
54.
Langer, D., et al. (2012). Exercise training after lung transplantation improves participation in daily activity: A randomized controlled trial. American Journal of Transplantation, 12(6), 1584–1592.PubMedCrossRef
55.
Institute of Medicine and National Research Council. (2005). From cancer patient to cancer survivor: Lost in transition. Washington, DC: The National Academies Press.
56.
Earle, C. C. (2006). Failing to plan is planning to fail: improving the quality of care with survivorship care plans. Journal of Clinical Oncology, 24(32), 5112–5116.PubMedCrossRef
Metagegevens
Titel
Defining novel health-related quality of life domains in lung transplantation: a qualitative analysis
Auteurs
Jonathan Paul Singer
Joan Chen
Patricia P. Katz
Paul David Blanc
Marjorie Kagawa-Singer
Anita L. Stewart
Publicatiedatum
01-06-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 6/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-014-0875-5

Andere artikelen Uitgave 6/2015

Quality of Life Research 6/2015 Naar de uitgave

OriginalPaper

Cross-cultural measurement equivalence of the EQ-5D-5L items for English-speaking Asians in Singapore

OriginalPaper

Measurement properties of the 13-item sense of coherence scale using Rasch analysis

OriginalPaper

Anxiety and worry when coping with cancer treatment: agreement between patient and proxy responses

OriginalPaper

Comparing responsiveness of the EQ-5D-5L, EQ-5D-3L and EQ VAS in stroke patients

OriginalPaper

Support and negativity in interpersonal relationships impact caregivers’ quality of life in pediatric food allergy

OriginalPaper

Development of the Alcohol Quality of Life Scale (AQoLS): a new patient-reported outcome measure to assess health-related quality of life in alcohol use disorder