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Quality of Life Research
Published in: Quality of Life Research 2/2010

Open Access 01-03-2010

Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies

Authors: Elsbeth F. Taminiau-Bloem, Mechteld R. M. Visser, Carol Tishelman, Margot A. Koeneman, Florence J. van Zuuren, Mirjam A. G. Sprangers

Published in: Quality of Life Research | Issue 2/2010

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Abstract

Objective

To review which domains somatically ill persons nominate as constituting their QoL. Specific objective is to examine whether the method of enquiry affect these domains.

Methods

We conducted two literature searches in the databases PubMed/Medline, CINAHL and Psychinfo for qualitative studies examining patients’ self-defined QoL domains using (1) SEIQoL and (2) study-specific questions. For each database, two researchers independently assessed the eligibility of the retrieved abstracts and three researchers subsequently classified all QoL domains.

Results

Thirty-six eligible papers were identified: 27 studies using the SEIQoL, and nine presenting data derived from study-specific questions. The influence of the method of enquiry on patients’ self-nominated QoL domains appears limited: most domains were presented in both types of studies, albeit with different frequencies.

Conclusions

This review provides a comprehensive overview of somatically ill persons’ self-nominated QoL domains. However, limitations inherent to reviewing qualitative studies (e.g., the varying level of abstraction of patients’ self-defined QoL domains), limitations of the included studies and limitations inherent to the review process, hinder cross-study comparisons. Therefore, we provide guidelines to address shortcomings of qualitative reports amenable to improvement and to stimulate further improvement of conducting and reporting qualitative research aimed at exploring respondents’ self-nominated QoL domains.
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Literature
1.
Garratt, A., Schmidt, L., Mackintosh, A., & Fitzpatrick, R. (2002). Quality of life measurement: Bibliographic study of patient assessed health outcome measures. British Medical Journal, 324, 1417–1421.CrossRefPubMed
2.
Revicki, D. A., Osoba, D., Fairclough, D., Barofsky, I., Berzon, R., Leidy, N. K., et al. (2000). Recommendations on health-related quality of life research to support labeling and promotional claims in the United States. Quality of Life Research, 9, 887–900.CrossRefPubMed
3.
Dijkers, M. P. (2003). Individualization in quality of life measurement: Instruments and approaches. Archives of Physical Medicine and Rehabilitation, 84, S3–S14.CrossRefPubMed
4.
Morris, D. B., Wilson, K. G., Clinch, J. J., Ammerman, D. J., Fergusson, D., Graham, I. D., et al. (2006). Identification of domains relevant to health-related quality of life in patients undergoing major surgery. Quality of Life Research, 15, 841–854.CrossRefPubMed
5.
DuBeau, C. E., Levy, B., Mangione, C. M., & Resnick, N. M. (1998). The impact of urge urinary incontinence on quality of life: Importance of patients’ perspective and explanatory style. Journal of the American Geriatrics Society, 46(6), 683–692.PubMed
6.
Watt, T., Hegedüs, L., Rasmussen, A. K., Groenvold, M., Bonnema, S. T., Bjorner, J. B., et al. (2007). Which domains of thyroid-related quality of life are most relevant? Patients and clinicians provide complementary perspectives. Thyroid, 17(7), 647–654.CrossRefPubMed
7.
McGee, H. M., O’Boyle, C. A., Hickey, A., O’Malley, K., & Joyce, C. R. B. (1991). Assessing the quality of life of the individual: The SEIQoL with a healthy and a gastroenterology unit population. Psychological Medicine, 21, 749–759.CrossRefPubMed
8.
Hickey, A. M., Bury, G., O’Boyle, C. A., Bradley, F., O’Kelly, F. D., & Shannon, W. (1996). A new short form individual quality of life measure (SEIQoL-DW): Application in a cohort of individuals with HIV/AIDS. British Medical Journal, 313(7048), 29–33.PubMed
9.
Wettergren, L., Kettis-Lindblad, Å., Sprangers, M., & Ring, L. (2009). The use, feasibility and psychometric properties of an individualized quality-of-life instrument: A systematic review of the SEIQoL-DW. Quality of Life Research, 18, 737–746.CrossRefPubMed
10.
O’Boyle, C. A., Browne, J., Hickey, A., McGee, H. M., & Joyce, C. R. B. (1995). Schedule fro the evaluation of individual quality of life (SEIQoL): A direct weighting procedure for quality of life domains (SEIQoL-DW): Administration manual. Dublin: Royal College of Surgeons in Ireland, Department of Psychology.
11.
Ruta, D. A., Garratt, A. M., Leng, M., Russell, I. T., & MacDonald, L. M. (1994). A new approach to the measurement of quality of life. The patient-generated index. Medical Care, 32(11), 1109–1126.CrossRefPubMed
12.
Cantrill, H. (1966). The pattern of human concerns. New Brunswick: Rutgers University Press.
13.
Bradley, C., Todd, C., Gorton, T., Symonds, E., Martin, A., & Plowright, R. (1999). The development of an individualized questionnaire measure of perceived impact of diabetes on quality of life: The ADDQoL. Quality of Life Research, 8, 79–91.CrossRefPubMed
14.
WHOQOL Group. (1998). The world health organization quality of life assessment (WHOQOL): Development, general psychometric properties. Social Science and Medicine, 46, 1569–1585.CrossRef
15.
Pearcy, R., Waldron, D., O’Boyle, C., & MacDonagh, R. (2008). Proxy assessment of quality of life in patients with prostate cancer: How accurate are partners and urologists? Journal of the Royal Society of Medicine, 101, 133–138.CrossRefPubMed
16.
Wettergren, L., Sprangers, M., Björkholm, M., & Langius-Eklöf, A. (2008). Quality of life before and one year following stem cell transplantation using an individualized and a standardized instrument. Psychooncology, 17, 338–346.CrossRefPubMed
17.
Lee, M. A., Walker, R. W., Hildreth, A. J., & Prentice, W. M. (2006). Individualized assessment of quality of life in idiopathic Parkinson’s disease. Movement Disorders, 21(11), 1929–1934.CrossRefPubMed
18.
Westerman, M., Hak, T., The, A. M., Groen, H., & van der Wal, G. (2006). Problems eliciting cues in SEIQoL-DW: Quality of life areas in small-cell lung cancer patients. Quality of Life Research, 15, 441–449.CrossRefPubMed
19.
Sharpe, L., Butow, P., Smith, C., McConnell, D., & Clarke, S. (2005). Changes in quality of life in patients with advanced cancer: Evidence of response shift and response restriction. Journal of Psychosomatic Research, 58(6), 497–504.CrossRefPubMed
20.
Lo Coco, G., Lo Coco, D., Cicero, V., Oliveri, A., Lo Verso, G., Piccoli, F., et al. (2005). Individual and health-related quality of life assessments in amyotrophic lateral sclerosis patients and their caregivers. Journal of the Neurological Sciences, 238(1–2), 11–17.CrossRefPubMed
21.
Willener, R., & Hantikainen, V. (2005). Individual quality of life following radical prostatectomy. Urologic Nursing, 25(2), 95–100.
22.
Carlson, L. E., Bultz, B. D., & Morris, D. G. (2005). Individualized quality of life, standardized quality of life, and distress in patients undergoing a phase I trial of the novel therapeutic Reolysin (reovirus). Health and Quality of Life Outcomes, 3, 7.CrossRefPubMed
23.
Gribbin, G. M., Kenny, R. A., McCue, P., Toff, W. D., Bexton, R. S., & McComb, J. M. (2004). Individualized quality of life after pacing. Does mode matter? Europace, 6(6), 552–560.CrossRefPubMed
24.
Levack, P., Graham, J., & Kidd, J. (2004). Listen to the patient: Quality of life of patients with recently diagnosed malignant cord compression in relation to their disability. Palliative Medicine, 18(7), 594–601.CrossRefPubMed
25.
Neudert, C., Wasner, M., & Borasio, G. D. (2004). Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine, 7(4), 551–557.CrossRefPubMed
26.
Mountain, L. A., Campbell, S. E., Seymour, D. G., Primrose, W. R., & Whyte, M. I. (2004). Assessment of individual quality of life using the SEIQoL-DW in older medical patients. QJM, 97(8), 519–524.CrossRefPubMed
27.
Tovbin, D., Gidron, Y., Jean, T., Granovsky, R., & Schnieder, A. (2003). Relative importance and interrelations between psychosocial factors and individualized quality of life of hemodialysis patients. Quality of Life Research, 12(6), 709–717.CrossRefPubMed
28.
Montgomery, C., Pocock, M., Titley, K., & Lloyd, K. (2002). Individual quality of life in patients with leukaemia and lymphoma. Psychooncology, 11(3), 239–243.CrossRefPubMed
29.
Bromberg, M. B., & Forshew, D. A. (2002). Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology, 58(2), 320–322.PubMed
30.
Neudert, C., Wasner, M., & Borasio, G. D. (2001). Patients’ assessment of quality of life instruments: A randomized study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. Journal of Neurological Sciences, 191(1–2), 103–109.CrossRef
31.
Clarke, S., Hickey, A., O’Boyle, C., & Hardiman, O. (2001). Assessing individual quality of life in amyotrophic lateral sclerosis. Quality of Life Research, 10(2), 149–158.CrossRefPubMed
32.
Smith, H. J., Taylor, R., & Mitchell, A. (2000). A comparison of four quality of life instruments in cardiac patients: SF-36, QLI, QLMI, and SEIQoL. Heart, 84(4), 390–394.CrossRefPubMed
33.
Bayle, B., Kemoun, G., Migaud, H., & Thevenon, A. (2000). Comparison of two modes of administration of a personalized quality of life scale in a longitudinal study of total hip arthroplasty. Joint Bone Spine, 67, 101–106.PubMed
34.
Waldron, D., O’Boyle, C. A., Kearney, M., Moriarty, M., & Carney, D. (1999). Quality-of-life measurement in advanced cancer: Assessing the individual. Journal of Clinical Oncology, 17(11), 3603–3611.PubMed
35.
Campbell, S., & Whyte, F. (1999). The quality of life of cancer patients participating in phase I clinical trials using SEIQoL-DW. Journal of Advanced Nursing, 30(2), 335–343.CrossRefPubMed
36.
O’Boyle, C. A., McGee, H., Hickey, A., O’Malley, K., & Joyce, C. R. (1992). Individual quality of life in patients undergoing hip replacement. Lancet, 339(8801), 1088–1091.CrossRefPubMed
37.
Saban, K. L., & Penckofer, S. M. (2007). Patient expectation of quality of life following lumbar spinal surgery. Journal of Neuroscience Nursing, 39(3), 180–189.CrossRefPubMed
38.
Echteld, M. A., Deliens, L., Ooms, M. E., Ribbe, M. W., & van der Wal, G. (2005). Quality of life change and response shift in patients admitted to palliative care units: A pilot study. Palliative Medicine, 19, 381–388.CrossRefPubMed
39.
Fegg, M. J., Wasner, M., Neudert, C., & Borasio, G. D. (2005). Personal values and individual quality of life in palliative care patients. Journal of Pain and Symptom Management, 30(2), 154–159.CrossRefPubMed
40.
Warschausky, S., Dixon, P., Forchheimer, M., Nelson, V. S., Park, C., Gater, D., et al. (2005). Quality of life in persons with long-term mechanical ventilation or tetraplegic SCI without LTMV. Topics in Spinal Cord Injury Rehabilitation, 10(3), 94–101.CrossRef
41.
Frick, E., Borasio, G. D., Zehentner, H., Fischer, N., & Bumeder, I. (2004). Individual quality of life of patients undergoing autologous peripheral blood stem cell transplantation. Psycho-Oncology, 13, 116–124.CrossRefPubMed
42.
Smith, K., Ross, D., & Connolly, E. (2002). Investigating six-month health outcomes of patients with angina discharged from a chest pain service. European Journal of Cardiovascular Nursing, 1, 253–264.CrossRefPubMed
43.
Ramström, H., Erwander, I., Mared, L., Kornfält, R., & Seiving, B. (2000). Pharmaceutical intervention in the care of cystic fibrosis patients. Journal of Clinical Pharmacy & Therapeutics, 25, 427–434.CrossRef
44.
Broadhead, J. K., Robinson, J. W., & Atkinson, M. J. (1998). A new quality-of-life measure for oncology: The SEIQoL. Journal of Psychosocial Oncology, 16(1), 21–35.CrossRef
45.
Stiggelbout, A. M., de Vogel-Voogt, E., Noordijk, E. M., & Vliet Vlieland, T. P. M. (2008). Individual quality of life: Adaptive conjoint analysis as an alternative for direct weighting? Quality of Life Research, 17(4), 641–649.CrossRefPubMed
46.
Bengtsson, M., Ohlsson, B., & Ulander, K. (2007). Women with irritable bowel syndrome and their perception of a good quality of life. Gastroenterology Nursing, 30(2), 74–82.CrossRefPubMed
47.
Johansson, C. M., Axelsson, B., & Danielson, E. (2006). Living with incurable cancer at the end of life—Patients’ perspectives on quality of life. Cancer Nursing, 29(5), 391–399.CrossRefPubMed
48.
Widar, M., Ahlström, G., & Ek, A. C. (2004). Health-related quality of life in persons with long-term pain after a stroke. Journal of Clinical Nursing, 13(4), 497–505.CrossRefPubMed
49.
Carlsson, E., Bosaeus, I., & Nordgren, S. (2003). What concerns subjects with inflammatory bowel disease and an ileostomy? Scandinavian Journal of Gastroenterology, 38(9), 978–984.CrossRefPubMed
50.
Larsson, G., Haglund, K., & Von Essen, L. (2003). Distress, quality of life and strategies to ‘keep a good mood’ in patients with carcinoid tumours: Patient and staff perceptions. European Journal of Cancer Care, 12(1), 46–57.CrossRefPubMed
51.
Cohen, S. R., & Leis, A. (2002). What determines the quality of life of terminally ill cancer patients from their own perspective? Journal of Palliative Care, 18(1), 48–58.PubMed
52.
Constantini, M., Mencaglia, E., Giulio, P. D., Cortesi, E., Roila, F., Ballatori, E., et al. (2000). Cancer patients as ‘experts’ in defining quality of life domains. A multicentre survey by the Italian group for the evaluation of outcomes in oncology (IGEO). Quality of Life Research, 9, 151–159.CrossRef
53.
Archenholtz, B., Burckhardt, C. S., & Segesten, K. (1999). Quality of life of women with systemic lupus erythematosus or rheumatoid arthritis: Domains of importance and dissatisfaction. Quality of Life Research, 8, 411–416.CrossRefPubMed
54.
Fitzsimmons, D., George, S., Payne, S., & Johnson, C. D. (1999). Differences in perception of quality of life issues between health professionals and patients with pancreatic cancer. Psycho-Oncology, 8(2), 135–143.CrossRefPubMed
55.
Montazeri, A., Milroy, R., Gillis, C. R., & McEwen, J. (1996). Quality of life: Perception of lung cancer patients. European Journal of Cancer, 32(13), 2284–2289.CrossRef
56.
Padilla, G. V., Ferrell, B., Grant, M. M., & Rhiner, M. (1990). Defining the content domain of quality of life for cancer patients with pain. Cancer Nursing, 13(2), 108–115.CrossRefPubMed
57.
Sarvimäki, A., Simonsen-Rehn, N., & Benkö, S. S. (2003). Pain and the quality of life in cancer patients. Vard I Norden: Nursing Science and Research in the Nordic Countries, 23(3), 4–9.
58.
Brooks, N. (2000). Quality of life and the high-dependency unit. Intensive and Critical Care Nursing, 16, 18–32.CrossRefPubMed
59.
Miller, D. R., Clark, J. A., Rogers, W. H., Skinner, K. M., Spiro, A., 3rd, Lee, A., et al. (2005). The influence of place of administration on health-related quality-of-life assessments: Findings from the veterans Health Study. The Journal of Ambulatory Care Management, 28, 111–124.PubMed
60.
McColl, E., & Fayers, P. (2005). Context effects and proxy assessments. In P. Fayers & R. Hays (Eds.), Assessing quality of life in clinical trials. Methods and Practice (pp. 138–139). New York: Oxford University Press Inc.
61.
Barroso, J., Gollop, C. J., Sandelowski, M., Meynell, J., Pearce, P. F., & Collins, L. J. (2003). The challenges of searching for and retrieving qualitative studies. Western Journal of Nursing Research, 25, 153–178.CrossRefPubMed
62.
Mays, N., & Pope, C. (2000). Qualitative research in health care. Assessing quality in qualitative research. British Medical Journal, 320, 50–52.CrossRefPubMed
63.
Malterud, K. (2001). Qualitative research: Standards, challenges, and guidelines. Lancet, 358, 483–488.CrossRefPubMed
64.
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19, 349–357.CrossRefPubMed
65.
Wettergren, L., Björkholm, M., Axdorph, U., et al. (2003). Individual quality of life in long-term survivors of Hodgkin’s lymphoma—A comparative study. Quality of Life Research, 12, 545–554.CrossRefPubMed
66.
Burnard, P. (1991). A method of analyzing interview transcript in qualitative research. Nurse Education Today, 11, 461–466CrossRefPubMed
67.
Krippendorff, K. (2004). Content analysis. An introduction to its methodology. London: Sage.
68.
Waltz, C. F., Strickland, O. L., & Lenz, E. R. (1984). Measurement in nursing research. Philadelphia: FA Davis.
Metadata
Title
Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies
Authors
Elsbeth F. Taminiau-Bloem
Mechteld R. M. Visser
Carol Tishelman
Margot A. Koeneman
Florence J. van Zuuren
Mirjam A. G. Sprangers
Publication date
01-03-2010
Publisher
Springer Netherlands
Published in
Quality of Life Research / Issue 2/2010
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-009-9569-9

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