Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies
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.
- 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: pp. 1417-1421 CrossRef
- Revicki, DA, Osoba, D, Fairclough, D, Barofsky, I, Berzon, R, Leidy, NK, Rothman, M (2000) Recommendations on health-related quality of life research to support labeling and promotional claims in the United States. Quality of Life Research 9: pp. 887-900 CrossRef
- Dijkers, MP (2003) Individualization in quality of life measurement: Instruments and approaches. Archives of Physical Medicine and Rehabilitation 84: pp. S3-S14 CrossRef
- Morris, DB, Wilson, KG, Clinch, JJ, Ammerman, DJ, Fergusson, D, Graham, ID, Porath, AJ, Offman, A, Boland, I, Watters, J, Hébert, PC (2006) Identification of domains relevant to health-related quality of life in patients undergoing major surgery. Quality of Life Research 15: pp. 841-854 CrossRef
- DuBeau, CE, Levy, B, Mangione, CM, Resnick, NM (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: pp. 683-692
- Watt, T, Hegedüs, L, Rasmussen, AK, Groenvold, M, Bonnema, ST, Bjorner, JB, Feldt-Rasmussen, U (2007) Which domains of thyroid-related quality of life are most relevant? Patients and clinicians provide complementary perspectives. Thyroid 17: pp. 647-654 CrossRef
- McGee, HM, O’Boyle, CA, Hickey, A, O’Malley, K, Joyce, CRB (1991) Assessing the quality of life of the individual: The SEIQoL with a healthy and a gastroenterology unit population. Psychological Medicine 21: pp. 749-759 CrossRef
- Hickey, AM, Bury, G, O’Boyle, CA, Bradley, F, O’Kelly, FD, 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: pp. 29-33
- 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: pp. 737-746 CrossRef
- O’Boyle, CA, Browne, J, Hickey, A, McGee, HM, Joyce, CRB (1995) Schedule fro the evaluation of individual quality of life (SEIQoL): A direct weighting procedure for quality of life domains (SEIQoL-DW): Administration manual. Royal College of Surgeons in Ireland, Department of Psychology, Dublin
- Ruta, DA, Garratt, AM, Leng, M, Russell, IT, MacDonald, LM (1994) A new approach to the measurement of quality of life. The patient-generated index. Medical Care 32: pp. 1109-1126 CrossRef
- Cantrill, H (1966) The pattern of human concerns. Rutgers University Press, New Brunswick
- 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: pp. 79-91 CrossRef
- The world health organization quality of life assessment (WHOQOL): Development, general psychometric properties. Social Science and Medicine 46: pp. 1569-1585 CrossRef
- 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: pp. 133-138 CrossRef
- 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: pp. 338-346 CrossRef
- Lee, MA, Walker, RW, Hildreth, AJ, Prentice, WM (2006) Individualized assessment of quality of life in idiopathic Parkinson’s disease. Movement Disorders 21: pp. 1929-1934 CrossRef
- Westerman, M, Hak, T, The, AM, Groen, H, Wal, G (2006) Problems eliciting cues in SEIQoL-DW: Quality of life areas in small-cell lung cancer patients. Quality of Life Research 15: pp. 441-449 CrossRef
- 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: pp. 497-504 CrossRef
- Lo Coco, G, Lo Coco, D, Cicero, V, Oliveri, A, Lo Verso, G, Piccoli, F, La Bella, V (2005) Individual and health-related quality of life assessments in amyotrophic lateral sclerosis patients and their caregivers. Journal of the Neurological Sciences 238: pp. 11-17 CrossRef
- Willener, R, Hantikainen, V (2005) Individual quality of life following radical prostatectomy. Urologic Nursing 25: pp. 95-100
- Carlson, LE, Bultz, BD, Morris, DG (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: pp. 7 CrossRef
- Gribbin, GM, Kenny, RA, McCue, P, Toff, WD, Bexton, RS, McComb, JM (2004) Individualized quality of life after pacing. Does mode matter?. Europace 6: pp. 552-560 CrossRef
- 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: pp. 594-601 CrossRef
- Neudert, C, Wasner, M, Borasio, GD (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: pp. 551-557 CrossRef
- Mountain, LA, Campbell, SE, Seymour, DG, Primrose, WR, Whyte, MI (2004) Assessment of individual quality of life using the SEIQoL-DW in older medical patients. QJM 97: pp. 519-524 CrossRef
- 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: pp. 709-717 CrossRef
- Montgomery, C, Pocock, M, Titley, K, Lloyd, K (2002) Individual quality of life in patients with leukaemia and lymphoma. Psychooncology 11: pp. 239-243 CrossRef
- Bromberg, MB, Forshew, DA (2002) Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology 58: pp. 320-322
- Neudert, C, Wasner, M, Borasio, GD (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: pp. 103-109 CrossRef
- Clarke, S, Hickey, A, O’Boyle, C, Hardiman, O (2001) Assessing individual quality of life in amyotrophic lateral sclerosis. Quality of Life Research 10: pp. 149-158 CrossRef
- Smith, HJ, Taylor, R, Mitchell, A (2000) A comparison of four quality of life instruments in cardiac patients: SF-36, QLI, QLMI, and SEIQoL. Heart 84: pp. 390-394 CrossRef
- 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: pp. 101-106
- Waldron, D, O’Boyle, CA, Kearney, M, Moriarty, M, Carney, D (1999) Quality-of-life measurement in advanced cancer: Assessing the individual. Journal of Clinical Oncology 17: pp. 3603-3611
- 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: pp. 335-343 CrossRef
- O’Boyle, CA, McGee, H, Hickey, A, O’Malley, K, Joyce, CR (1992) Individual quality of life in patients undergoing hip replacement. Lancet 339: pp. 1088-1091 CrossRef
- Saban, KL, Penckofer, SM (2007) Patient expectation of quality of life following lumbar spinal surgery. Journal of Neuroscience Nursing 39: pp. 180-189 CrossRef
- Echteld, MA, Deliens, L, Ooms, ME, Ribbe, MW, Wal, G (2005) Quality of life change and response shift in patients admitted to palliative care units: A pilot study. Palliative Medicine 19: pp. 381-388 CrossRef
- Fegg, MJ, Wasner, M, Neudert, C, Borasio, GD (2005) Personal values and individual quality of life in palliative care patients. Journal of Pain and Symptom Management 30: pp. 154-159 CrossRef
- Warschausky, S, Dixon, P, Forchheimer, M, Nelson, VS, Park, C, Gater, D, Tate, D (2005) Quality of life in persons with long-term mechanical ventilation or tetraplegic SCI without LTMV. Topics in Spinal Cord Injury Rehabilitation 10: pp. 94-101 CrossRef
- Frick, E, Borasio, GD, Zehentner, H, Fischer, N, Bumeder, I (2004) Individual quality of life of patients undergoing autologous peripheral blood stem cell transplantation. Psycho-Oncology 13: pp. 116-124 CrossRef
- 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: pp. 253-264 CrossRef
- 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: pp. 427-434 CrossRef
- Broadhead, JK, Robinson, JW, Atkinson, MJ (1998) A new quality-of-life measure for oncology: The SEIQoL. Journal of Psychosocial Oncology 16: pp. 21-35 CrossRef
- Stiggelbout, AM, Vogel-Voogt, E, Noordijk, EM, Vliet Vlieland, TPM (2008) Individual quality of life: Adaptive conjoint analysis as an alternative for direct weighting?. Quality of Life Research 17: pp. 641-649 CrossRef
- Bengtsson, M, Ohlsson, B, Ulander, K (2007) Women with irritable bowel syndrome and their perception of a good quality of life. Gastroenterology Nursing 30: pp. 74-82 CrossRef
- Johansson, CM, Axelsson, B, Danielson, E (2006) Living with incurable cancer at the end of life—Patients’ perspectives on quality of life. Cancer Nursing 29: pp. 391-399 CrossRef
- Widar, M, Ahlström, G, Ek, AC (2004) Health-related quality of life in persons with long-term pain after a stroke. Journal of Clinical Nursing 13: pp. 497-505 CrossRef
- Carlsson, E, Bosaeus, I, Nordgren, S (2003) What concerns subjects with inflammatory bowel disease and an ileostomy?. Scandinavian Journal of Gastroenterology 38: pp. 978-984 CrossRef
- Larsson, G, Haglund, K, 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: pp. 46-57 CrossRef
- Cohen, SR, Leis, A (2002) What determines the quality of life of terminally ill cancer patients from their own perspective?. Journal of Palliative Care 18: pp. 48-58
- Constantini, M, Mencaglia, E, Giulio, PD, Cortesi, E, Roila, F, Ballatori, E, Tamburini, M, Casali, P, Licitra, L, Candis, DD, Massidda, B, Luzzani, M, Campora, E, Placido, SD, Palmeri, S, Angela, PM, Baracco, G, Gareri, R, Martignetti, A, Ragosa, S, Zoda, L, Ionta, MT, Bulletti, S, Pastore, L (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: pp. 151-159 CrossRef
- Archenholtz, B, Burckhardt, CS, 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: pp. 411-416 CrossRef
- Fitzsimmons, D, George, S, Payne, S, Johnson, CD (1999) Differences in perception of quality of life issues between health professionals and patients with pancreatic cancer. Psycho-Oncology 8: pp. 135-143 CrossRef
- Montazeri, A, Milroy, R, Gillis, CR, McEwen, J (1996) Quality of life: Perception of lung cancer patients. European Journal of Cancer 32: pp. 2284-2289 CrossRef
- Padilla, GV, Ferrell, B, Grant, MM, Rhiner, M (1990) Defining the content domain of quality of life for cancer patients with pain. Cancer Nursing 13: pp. 108-115 CrossRef
- Sarvimäki, A, Simonsen-Rehn, N, Benkö, SS (2003) Pain and the quality of life in cancer patients. Vard I Norden: Nursing Science and Research in the Nordic Countries 23: pp. 4-9
- Brooks, N (2000) Quality of life and the high-dependency unit. Intensive and Critical Care Nursing 16: pp. 18-32 CrossRef
- Miller, DR, Clark, JA, Rogers, WH, Skinner, KM, Spiro, A, Lee, A, Kazis, LE (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: pp. 111-124
- McColl, E, Fayers, P Context effects and proxy assessments. In: Fayers, P, Hays, R eds. (2005) Assessing quality of life in clinical trials. Methods and Practice. Oxford University Press Inc, New York, pp. 138-139
- Barroso, J, Gollop, CJ, Sandelowski, M, Meynell, J, Pearce, PF, Collins, LJ (2003) The challenges of searching for and retrieving qualitative studies. Western Journal of Nursing Research 25: pp. 153-178 CrossRef
- Mays, N, Pope, C (2000) Qualitative research in health care. Assessing quality in qualitative research. British Medical Journal 320: pp. 50-52 CrossRef
- Malterud, K (2001) Qualitative research: Standards, challenges, and guidelines. Lancet 358: pp. 483-488 CrossRef
- 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: pp. 349-357 CrossRef
- Wettergren, L, Björkholm, M, Axdorph, U (2003) Individual quality of life in long-term survivors of Hodgkin’s lymphoma—A comparative study. Quality of Life Research 12: pp. 545-554 CrossRef
- Burnard, P (1991) A method of analyzing interview transcript in qualitative research. Nurse Education Today 11: pp. 461-466 CrossRef
- Krippendorff, K (2004) Content analysis. An introduction to its methodology. Sage, London
- Waltz, CF, Strickland, OL, Lenz, ER (1984) Measurement in nursing research. FA Davis, Philadelphia
- Title
- Somatically ill persons’ self-nominated quality of life domains: review of the literature and guidelines for future studies
- Open Access
- Available under Open Access This content is freely available online to anyone, anywhere at any time.
- Journal
-
Quality of Life Research
Volume 19, Issue 2 , pp 253-291
- Cover Date
- 2010-03-01
- DOI
- 10.1007/s11136-009-9569-9
- Print ISSN
- 0962-9343
- Online ISSN
- 1573-2649
- Publisher
- Springer Netherlands
- Additional Links
- Topics
- Keywords
-
- Quality of life
- SEIQoL
- Review
- Individualized measures
- Cancer
- Industry Sectors
- Authors
-
-
Elsbeth F. Taminiau-Bloem
(1)
- Mechteld R. M. Visser (2)
- Carol Tishelman (3) (4) (5)
- Margot A. Koeneman (1)
- Florence J. van Zuuren (6)
- Mirjam A. G. Sprangers (1)
-
Elsbeth F. Taminiau-Bloem
- Author Affiliations
-
- 1. Department of Medical Psychology, Academic Medical Center, University of Amsterdam, P.O. Box 22700, 1100 DE, Amsterdam, The Netherlands
- 2. Department of General Practice, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
- 3. Department of Learning, Informatics, Management & Ethics, Medical Management Center, Karolinska Institutet, Stockholm, Sweden
- 4. R&D Unit/Palliative Care Foundation Stockholms Sjukhem, Stockholm, Sweden
- 5. University of Manchester, School of Nursing, Midwifery and Social Work, Manchester, UK
- 6. Department of Clinical Psychology, University of Amsterdam, Amsterdam, The Netherlands