- Email: [email protected]
Qualitative interviews vs standardized self-report questionnaires in assessing quality of life in heart transplant recipients
http://www.jhltonline.org
CLINICAL DILEMMAS
Qualitative interviews vs standardized self-report questionnaires in assessing quality of life in heart transplant recipients Susan E. Abbey, MD,a Enza De Luca, RN, MN,b Oliver E. Mauthner, RN, MN,c Patricia McKeever, PhD,d Margrit Shildrick, PhD,e Jennifer M. Poole, PhD,f Mena Gewarges, BSc,c and Heather J. Ross, MDc From the aDepartment of Psychiatry, University Health Network, University of Toronto, Toronto; bDepartment of Cardiology and Transplantation, University Health Network, Toronto; cDepartment of Cardiology and Transplant, University Health Network, University of Toronto, Toronto; dBloorview Research Institute, Bloorview Kids Rehab, Toronto; eSchool of Sociology, Social Policy and Social Work, Queen’s University, Belfast, Northern Ireland; and fSchool of Social Work, Faculty of Community Services, Ryerson University, Toronto, Ontario, Canada.
KEYWORDS: quality of life; qualitative interviews; transplantation; phenomenology; audio-visual methodology
Quality of life (QoL) studies in heart transplant recipients (HTRs) using validated, quantitative, self-report questionnaires have reported poor QoL in approximately 20% of patients. This consecutive mixed methods study compared self-report questionnaires, the Medical Outcomes Study 36-item Short Form Health Survey (MOS SF-36) and the Atkinson Life Satisfaction Scale, with phenomenologically informed audiovisual (AV) qualitative interview data in 27 medically stable HTRs (70% male; age 53 ⫾ 13.77 years; time since transplant 4.06 ⫾ 2.42 years). Self-report questionnaire data reported poor QoL and more distress compared with previous studies and normative population samples; in contrast, 52% of HTRs displayed pervasive distress according to visual methodology. Using qualitative methods to assess QoL yields information that would otherwise remain unobserved by the exclusive use of quantitative QOL questionnaires. J Heart Lung Transplant 2011;30:963– 6 © 2011 International Society for Heart and Lung Transplantation. All rights reserved.
Heart transplantation (HTx) is the accepted therapy for patients with refractory advanced heart failure.1 Over 90% of patients return to a high functional status after transplant.1 To date, psychosocial outcome research has focused on 5 major areas: physical functioning; psychologic functioning; behavior in managing the post-transplant medical regimen; social functioning; and “global quality of life.”2 Psychosocial outcomes, health-related quality of life (QoL), “distress,” and the experience of living with a transplanted heart have been less well studied. The majority of psychosocial outcome studies have relied on quantifiable, selfReprint requests: Heather J. Ross, MD, University Health Network, Division of Cardiology, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON M5G 2C4, Canada. Telephone: 416-340-3482. Fax: 416-3404134. E-mail address: [email protected]
report questionnaires with increased use of validated instruments over the past decade,2 demonstrating that, although the majority of heart transplant recipients (HTRs) demonstrate improvement in QoL post-transplant, approximately 20% to 30% have documented poor QoL on self-report measures.1,3,4 The International Society for Heart and Lung Transplantation (ISHLT) has recently called for more and better quality research in this area.2 Most studies have focused on a medicalized interpretation of HTR distress with psychiatric diagnoses, such as depression, anxiety, post-traumatic stress or psychosis, using quantitative methodology.1,3,4 Many clinicians and social science researchers find this perspective incomplete and have turned to qualitative research informed by anthropology,5,6 sociology7 and philosophy8 –10 in an attempt to understand this distress from a broader perspective. They
1053-2498/$ -see front matter © 2011 International Society for Heart and Lung Transplantation. All rights reserved. doi:10.1016/j.healun.2011.03.017
964
The Journal of Heart and Lung Transplantation, Vol 30, No 8, August 2011
argue that recipients face the much greater task of incorporating the transplanted heart psychically or philosophically into their sense of self and that this may account for a significant part of the reported distress in QoL studies.9,10 Herein, the term “distress” is defined as mental suffering, affliction or trouble, which may be transient or pervasive, visible, hidden or clinically acute.11 This qualitative approach not only stands in contrast to the common practice of using quantitative research in transplantation, but has been underestimated and considered by some to be unscientific. We recently conducted a phenomenologically informed qualitative study using visual methodology to assess distress in HTRs. Participants displayed much higher levels of distress than previously reported in the heart transplantation (HTx) literature.11 We sought to determine whether this sample was unique in its distress, constituted a sampling error, or was reflective of the larger HTx population. Given the paucity of mixed methods studies in this area we compared results of validated QoL questionnaires to published QoL reports and standardized population norms and to distress reported using visual methodology11 in this study population.
available for Canada,14,15 the USA16,17 and in continental European countries and the UK.16,17 Interviews. The phenomenologically informed visual methodology study has been described extensively.11 In summary, semistructured interviews were conducted using an interview guide based on the project’s overarching research questions. The interviews were recorded as per visual methods practices and transcribed verbatim including dialog, pauses, silences and laughter. Transcripts, field notes compiled immediately after the interview, and digital video files were also reviewed.
Analysis Analysis of interview data included a phenomenologically informed visual methodology, oriented to Merleau–Ponty, which focused on participants’ verbal and bodily expressions with attention to the analytic conventions of visual methodology.11 The SF-36 was scored according to the published scoring system18 and the physical and mental component scores were calculated. The ALSS represents a single data point and no scoring is required. Quantitative and qualitative results were compared using descriptive analysis.
Results Methods
Interview reported distress
Design
The results of audiovisual (AV) interview data have been reported elsewhere.11 In brief, although none of the participants had been previously identified by the HTx team as having poor psychosocial outcomes, 22 of 25 HTRs (88%) displayed some form of distress in the interview. This distress was from discussion of the donor, donor family, the writing or receiving of a donor letter, and the “gift of life” from the donor. Pervasive distress throughout the interview was demonstrated by 13 of the HTRs (52%), manifested as anger, sadness and flat affect, regardless of the discussion content. Pervasive distress was associated with concerns about the donor and the “gift of life,” as well as fears of death, disturbing dreams and “unexplained” strong feelings. In 12 of these 13 HTRs, it was deemed significant enough by the team to be of clinical concern. In addition, 1 distressed HTR was subsequently diagnosed with post-traumatic stress disorder. Incongruities between words and expressive gestures were seen in the majority of HTRs with 22 of 25 at some point in the interview speaking positively about the transplant while their voices and bodily expressions indicated distress.
Consecutive mixed methods assessment using validated, selfreport QoL questionnaire data was compared with previously reported distress using a qualitative visual method within the same study cohort, and also compared with published HTx data and population norms. Details of the visual methodology have been reported previously.11 The study was approved by the research ethics board of the University Health Network. Patients signed an informed consent document before each component of data collection.
Participants Entry criteria included: age ⱖ18 years; medically stable; 1 to 10 years post-HTx; English speaking; and without evidence of cognitive impairment. Twenty-nine eligible HTRs were approached and 2 declined to be interviewed, leaving a study population of 27 participants. Technical difficulties with 2 interview recordings left a final sample of 25 participants.
Data collection
Self-report questionnaire data
Self-report QoL questionnaires. Participants were mailed validated, self-report QoL questionnaires. The Medical Outcomes Study 36-item Short Form Health Survey (MOS SF-36)12 is a validated scale widely used in heart transplant QoL research.13 The scale yields a total score and two component scale scores: physical and mental. The Atkinson Life Satisfaction Scale (ALSS)14 is a single-item measure of QoL expressed as global satisfaction with life. It uses a visual-analog scale with anchors ranging from 1 (very unhappy) to 11 (very happy). Normative data for the these tools are
Completed QoL questionnaires were available for 21 of the 25 HTRs. The average time between the interview and the questionnaire was 10.2 (SD 1.4) months. Scores for the HTRs on the MOS SF-36 were similar to those seen in other HTx programs19,20 and in another study by our group (Figure 1A).21 The mental component scale was similar to that of published normative data for the USA17 and Canada.15 All but 1 participant described satisfac-
Assessing Quality of Life Using Qualitative Interviews
B
A 100 Mean Score
80
Politi et al 2004
60 Goetzmann et al, 2008
40
100 Study Data, Ross et al 2010
80 70
US Normative Data, Ware et al, 1995
60 50
Canada Normative Data, Hopman et al, 2000
40 30
Holtzman et al, 2010
20
965
90
Study Data, Ross et al, 2010 Mean Score
Abbey et al.
20
0
0 Mental Component Scale
Study Data, Ross et al 2010
80 US Normative Data, Cummins 1998
60
Canada normative Data, Atkinson 1982
40
Other Contries Normative Data (averaged), Cummins 1998
20 0 Life Satisfaction
Happy
D 100
Unhappy
C Mean % of Scale Maximum
Other Countries Normative Data (averaged), Ware et al, 1998
10
Physical Component Mental Component Summary Summary
1 0 1 2 3 4 5 6 7 8 9 101112131415161718192021222324252627
Subject number
Figure 1 (A) SF-36 data compared with other centers. (B) SF-36 mental component scale compared with normative values. (C) Global QoL measured by the Atkinson Life Satisfaction Scale (ALSS) questionnaire. (D) Study participants’ ALSS score.
tion with their life comparable to general population normative data from Canada, the USA and Europe (Figure 1B). The average ALSS score was 8.2, which is comparable to normative population samples (Figure 1C).14,16 Of the 21 HTRs who completed the ALSS, only 1 (5%) scored below 6 (mid-point of scale; Figure 1D), which is in stark contrast to 52% of the same HTRs who displayed pervasive distress when the AV methodology was used.
Discussion Distress was more common and more fully explicated in our sample when queried using a phenomenologically informed methodology than with common health-related QoL self-report questionnaires. On the interview, 52% of HTRs demonstrated pervasive distress and 88% demonstrated significant transient distress during parts of the interview. Findings were consistent with psychosocial and psychoanalytic research, anecdotal evidence and first-person accounts indicating that many transplant recipients experience distress that cannot be understood adequately using biomedical explanatory models or research methodologies.11 In contrast, on self-report questionnaires, these same HTRs reported satisfactory QoL, with only 22% having poor QoL, similar to published data. Their mental health component scores and reported life satisfaction were similar to population norms. These findings raise a number of questions about how best to assess QoL in transplant recipients. Quantitative researchers have posited that the interview data reflect a brief snapshot in time in the given interview context, and thus the findings are not representative of patients’ daily life experience. Although there are many quantitative questionnaires that address a variety of domains within the broad spectrum of QoL, there exists no “gold standard.” We chose to use instruments that allowed for comparison to previous studies from our group21 and others19,20 and to population
norms.14 –18 There was a delay between the interviews and completion of the QoL questionnaires. It is possible that the distress seen at the interview had resolved by the time the participants completed their questionnaire. Indeed, the interview may have had a therapeutic effect on some participants as they had time to discuss issues that may not have come up within the clinic environment. Alternatively, selfreport QoL questionnaires may underestimate distress because they do not specifically address areas that are problematic for transplant recipients, and respondents may answer self-report questions with what they believe we want to hear.11 Our interview data made it clear that half of the patients in our sample are living with pervasive distress that they do not discuss in clinic. The ubiquitous concern about donors, donor families, and the psychologic and emotional challenges posed by the “gift of life” discourse are a daily part of their lives. These issues are not represented in standard QoL assessment measures. The study is limited by having been conducted in a single setting, although our SF-36 data are consistent with those published previously by our own and other programs.19 –21 Using qualitative methods to assess QoL yielded information that would otherwise have remained invisible through the exclusive use of quantitative QoL questionnaires. Future research studies of QoL of HTRs must consider the role of qualitative research using visual methods as well as mixed methodologies to advance the field. With a richer understanding of HTRs’ experiences, we hope to modify clinical practice to facilitate better patient outcomes.
Disclosure statement This project received peer-reviewed funding from the MultiOrgan Transplant Academic Enrichment Fund of the University Health Network. The authors have no conflicts of interest to disclose.
966
The Journal of Heart and Lung Transplantation, Vol 30, No 8, August 2011
References 1. Taylor DO, Edwards LB, Aurora P, et al. Registry of the International Society for Heart and Lung Transplantation: twenty-fifth official adult transplant report—2008. J Heart Lung Transplant 2008;27:943-56. 2. Cupples S, Dew MA, Grady KL, et al. Report of the Psychosocial Outcomes Workgroup of the Nursing and Social Sciences Council of the International Society for Heart and Lung Transplantation: present status of research on psychosocial outcomes in cardiothoracic transplantation: review and recommendations for the field. J Heart Lung Transplant 2006;25:716-25. 3. Dew M, DiMartini AF. Psychological disorders and distress after adult cardiothoracic transplantation. J Cardiovasc Nurs 2005;20(suppl):S51-66. 4. Kop E. Role of psychological factors in the clinical course of heart transplant patients. J Heart Lung Transplant 2010;29:257-60. 5. Sharp L. Organ transplantation as a transformative experience: anthropological insights into the restructuring of the self. Med Anthropol Q (New Series) 1995;9:357-89. 6. Lock M. Twice dead: organ transplants and the reinvention of death. Berkeley, CA: University of California Press; 2002. 7. Waldby C, Mitchell R. Tissue economies: blood, organs, and cell lines in late capitalism. Durham, NC: Duke University Press; 2006. 8. Shildrick M. The critical turn in feminist bioethics: the case of heart transplantation. Int J Feminist Approach Bioeth 2008;1:28-47. 9. Shildrick M, McKeever P, Abbey S, et al. Troubling dimensions of heart transplantation. Med Humanities 2009;35:35-8. 10. Poole J, Shildrick M, McKeever P, et al. ‘You might not feel like yourself’: On heart transplants, identity and ethics. In: Murray SJ, Holmes D, editors. Critical interventions in the ethics of healthcare. London: Ashgate; 2009:33-44. 11. Ross H, Abbey S, De Luca E, et al. What they say versus what we see:
12.
13.
14. 15. 16. 17.
18.
19.
20.
21.
“hidden” distress and impaired quality of life in heart transplant recipients. J Heart Lung Transplant 2010;29:1142-9. McHorney C, Ware JE, Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993; 31:247-63. Becker M, Erdmann N, Stegemann E, et al. Survival and quality of life in patients with cardiac resynchronization therapy for severe heart failure and in heart transplant recipients within a contemporary heart failure management program. J Heart Lung Transplant 2008;27:746-53. Atkinson T. The stability and validity of quality of life measures. Social Indic Res 1982;10:113-32. Hopman WM, Towheed T, Anastassiades T, et al. Canadian normative data for SF-36 Health Survey. Can Med Assoc J 2000;163:265-71. Cummins RA. The second approximation to an international standard for life satisfaction. Soc Indic Res 1998;43:307-34. Ware JE, Gandek B, Kosinski M, et al. The equivalence of SF-36 summary health scores estimated using standard and country-specific algorithms in 10 countries: results from the IQOLA Project. J Clin Epidemiol 1998;51:1167-70. Ware JE, Kosinski M. SF-36 physical and mental health summary scales: a manual for users of version 1, 2nd edition. Lincoln, RI: Quality Metric; 2001. Politi P, Piccinelli M, Fusar Poli P, et al. Ten years of “extended” life: quality of life among heart transplantation survivors. Transplantation 2004;78:257-63. Goetzman L, Serac N, Ambuhl P, et al. Psychological response and quality of life after transplantation: a comparison between heart, lung, liver and kidney recipients. Swiss Med Wkly 2008;138:477-83. Holtzman S, Abbey SE, Stewart DE, et al. Pain after heart transplantation: prevalence and implications for quality of life. Psychosomatics 2010;51:230-3.
CLINICAL DILEMMAS
Qualitative interviews vs standardized self-report questionnaires in assessing quality of life in heart transplant recipients Susan E. Abbey, MD,a Enza De Luca, RN, MN,b Oliver E. Mauthner, RN, MN,c Patricia McKeever, PhD,d Margrit Shildrick, PhD,e Jennifer M. Poole, PhD,f Mena Gewarges, BSc,c and Heather J. Ross, MDc From the aDepartment of Psychiatry, University Health Network, University of Toronto, Toronto; bDepartment of Cardiology and Transplantation, University Health Network, Toronto; cDepartment of Cardiology and Transplant, University Health Network, University of Toronto, Toronto; dBloorview Research Institute, Bloorview Kids Rehab, Toronto; eSchool of Sociology, Social Policy and Social Work, Queen’s University, Belfast, Northern Ireland; and fSchool of Social Work, Faculty of Community Services, Ryerson University, Toronto, Ontario, Canada.
KEYWORDS: quality of life; qualitative interviews; transplantation; phenomenology; audio-visual methodology
Quality of life (QoL) studies in heart transplant recipients (HTRs) using validated, quantitative, self-report questionnaires have reported poor QoL in approximately 20% of patients. This consecutive mixed methods study compared self-report questionnaires, the Medical Outcomes Study 36-item Short Form Health Survey (MOS SF-36) and the Atkinson Life Satisfaction Scale, with phenomenologically informed audiovisual (AV) qualitative interview data in 27 medically stable HTRs (70% male; age 53 ⫾ 13.77 years; time since transplant 4.06 ⫾ 2.42 years). Self-report questionnaire data reported poor QoL and more distress compared with previous studies and normative population samples; in contrast, 52% of HTRs displayed pervasive distress according to visual methodology. Using qualitative methods to assess QoL yields information that would otherwise remain unobserved by the exclusive use of quantitative QOL questionnaires. J Heart Lung Transplant 2011;30:963– 6 © 2011 International Society for Heart and Lung Transplantation. All rights reserved.
Heart transplantation (HTx) is the accepted therapy for patients with refractory advanced heart failure.1 Over 90% of patients return to a high functional status after transplant.1 To date, psychosocial outcome research has focused on 5 major areas: physical functioning; psychologic functioning; behavior in managing the post-transplant medical regimen; social functioning; and “global quality of life.”2 Psychosocial outcomes, health-related quality of life (QoL), “distress,” and the experience of living with a transplanted heart have been less well studied. The majority of psychosocial outcome studies have relied on quantifiable, selfReprint requests: Heather J. Ross, MD, University Health Network, Division of Cardiology, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON M5G 2C4, Canada. Telephone: 416-340-3482. Fax: 416-3404134. E-mail address: [email protected]
report questionnaires with increased use of validated instruments over the past decade,2 demonstrating that, although the majority of heart transplant recipients (HTRs) demonstrate improvement in QoL post-transplant, approximately 20% to 30% have documented poor QoL on self-report measures.1,3,4 The International Society for Heart and Lung Transplantation (ISHLT) has recently called for more and better quality research in this area.2 Most studies have focused on a medicalized interpretation of HTR distress with psychiatric diagnoses, such as depression, anxiety, post-traumatic stress or psychosis, using quantitative methodology.1,3,4 Many clinicians and social science researchers find this perspective incomplete and have turned to qualitative research informed by anthropology,5,6 sociology7 and philosophy8 –10 in an attempt to understand this distress from a broader perspective. They
1053-2498/$ -see front matter © 2011 International Society for Heart and Lung Transplantation. All rights reserved. doi:10.1016/j.healun.2011.03.017
964
The Journal of Heart and Lung Transplantation, Vol 30, No 8, August 2011
argue that recipients face the much greater task of incorporating the transplanted heart psychically or philosophically into their sense of self and that this may account for a significant part of the reported distress in QoL studies.9,10 Herein, the term “distress” is defined as mental suffering, affliction or trouble, which may be transient or pervasive, visible, hidden or clinically acute.11 This qualitative approach not only stands in contrast to the common practice of using quantitative research in transplantation, but has been underestimated and considered by some to be unscientific. We recently conducted a phenomenologically informed qualitative study using visual methodology to assess distress in HTRs. Participants displayed much higher levels of distress than previously reported in the heart transplantation (HTx) literature.11 We sought to determine whether this sample was unique in its distress, constituted a sampling error, or was reflective of the larger HTx population. Given the paucity of mixed methods studies in this area we compared results of validated QoL questionnaires to published QoL reports and standardized population norms and to distress reported using visual methodology11 in this study population.
available for Canada,14,15 the USA16,17 and in continental European countries and the UK.16,17 Interviews. The phenomenologically informed visual methodology study has been described extensively.11 In summary, semistructured interviews were conducted using an interview guide based on the project’s overarching research questions. The interviews were recorded as per visual methods practices and transcribed verbatim including dialog, pauses, silences and laughter. Transcripts, field notes compiled immediately after the interview, and digital video files were also reviewed.
Analysis Analysis of interview data included a phenomenologically informed visual methodology, oriented to Merleau–Ponty, which focused on participants’ verbal and bodily expressions with attention to the analytic conventions of visual methodology.11 The SF-36 was scored according to the published scoring system18 and the physical and mental component scores were calculated. The ALSS represents a single data point and no scoring is required. Quantitative and qualitative results were compared using descriptive analysis.
Results Methods
Interview reported distress
Design
The results of audiovisual (AV) interview data have been reported elsewhere.11 In brief, although none of the participants had been previously identified by the HTx team as having poor psychosocial outcomes, 22 of 25 HTRs (88%) displayed some form of distress in the interview. This distress was from discussion of the donor, donor family, the writing or receiving of a donor letter, and the “gift of life” from the donor. Pervasive distress throughout the interview was demonstrated by 13 of the HTRs (52%), manifested as anger, sadness and flat affect, regardless of the discussion content. Pervasive distress was associated with concerns about the donor and the “gift of life,” as well as fears of death, disturbing dreams and “unexplained” strong feelings. In 12 of these 13 HTRs, it was deemed significant enough by the team to be of clinical concern. In addition, 1 distressed HTR was subsequently diagnosed with post-traumatic stress disorder. Incongruities between words and expressive gestures were seen in the majority of HTRs with 22 of 25 at some point in the interview speaking positively about the transplant while their voices and bodily expressions indicated distress.
Consecutive mixed methods assessment using validated, selfreport QoL questionnaire data was compared with previously reported distress using a qualitative visual method within the same study cohort, and also compared with published HTx data and population norms. Details of the visual methodology have been reported previously.11 The study was approved by the research ethics board of the University Health Network. Patients signed an informed consent document before each component of data collection.
Participants Entry criteria included: age ⱖ18 years; medically stable; 1 to 10 years post-HTx; English speaking; and without evidence of cognitive impairment. Twenty-nine eligible HTRs were approached and 2 declined to be interviewed, leaving a study population of 27 participants. Technical difficulties with 2 interview recordings left a final sample of 25 participants.
Data collection
Self-report questionnaire data
Self-report QoL questionnaires. Participants were mailed validated, self-report QoL questionnaires. The Medical Outcomes Study 36-item Short Form Health Survey (MOS SF-36)12 is a validated scale widely used in heart transplant QoL research.13 The scale yields a total score and two component scale scores: physical and mental. The Atkinson Life Satisfaction Scale (ALSS)14 is a single-item measure of QoL expressed as global satisfaction with life. It uses a visual-analog scale with anchors ranging from 1 (very unhappy) to 11 (very happy). Normative data for the these tools are
Completed QoL questionnaires were available for 21 of the 25 HTRs. The average time between the interview and the questionnaire was 10.2 (SD 1.4) months. Scores for the HTRs on the MOS SF-36 were similar to those seen in other HTx programs19,20 and in another study by our group (Figure 1A).21 The mental component scale was similar to that of published normative data for the USA17 and Canada.15 All but 1 participant described satisfac-
Assessing Quality of Life Using Qualitative Interviews
B
A 100 Mean Score
80
Politi et al 2004
60 Goetzmann et al, 2008
40
100 Study Data, Ross et al 2010
80 70
US Normative Data, Ware et al, 1995
60 50
Canada Normative Data, Hopman et al, 2000
40 30
Holtzman et al, 2010
20
965
90
Study Data, Ross et al, 2010 Mean Score
Abbey et al.
20
0
0 Mental Component Scale
Study Data, Ross et al 2010
80 US Normative Data, Cummins 1998
60
Canada normative Data, Atkinson 1982
40
Other Contries Normative Data (averaged), Cummins 1998
20 0 Life Satisfaction
Happy
D 100
Unhappy
C Mean % of Scale Maximum
Other Countries Normative Data (averaged), Ware et al, 1998
10
Physical Component Mental Component Summary Summary
1 0 1 2 3 4 5 6 7 8 9 101112131415161718192021222324252627
Subject number
Figure 1 (A) SF-36 data compared with other centers. (B) SF-36 mental component scale compared with normative values. (C) Global QoL measured by the Atkinson Life Satisfaction Scale (ALSS) questionnaire. (D) Study participants’ ALSS score.
tion with their life comparable to general population normative data from Canada, the USA and Europe (Figure 1B). The average ALSS score was 8.2, which is comparable to normative population samples (Figure 1C).14,16 Of the 21 HTRs who completed the ALSS, only 1 (5%) scored below 6 (mid-point of scale; Figure 1D), which is in stark contrast to 52% of the same HTRs who displayed pervasive distress when the AV methodology was used.
Discussion Distress was more common and more fully explicated in our sample when queried using a phenomenologically informed methodology than with common health-related QoL self-report questionnaires. On the interview, 52% of HTRs demonstrated pervasive distress and 88% demonstrated significant transient distress during parts of the interview. Findings were consistent with psychosocial and psychoanalytic research, anecdotal evidence and first-person accounts indicating that many transplant recipients experience distress that cannot be understood adequately using biomedical explanatory models or research methodologies.11 In contrast, on self-report questionnaires, these same HTRs reported satisfactory QoL, with only 22% having poor QoL, similar to published data. Their mental health component scores and reported life satisfaction were similar to population norms. These findings raise a number of questions about how best to assess QoL in transplant recipients. Quantitative researchers have posited that the interview data reflect a brief snapshot in time in the given interview context, and thus the findings are not representative of patients’ daily life experience. Although there are many quantitative questionnaires that address a variety of domains within the broad spectrum of QoL, there exists no “gold standard.” We chose to use instruments that allowed for comparison to previous studies from our group21 and others19,20 and to population
norms.14 –18 There was a delay between the interviews and completion of the QoL questionnaires. It is possible that the distress seen at the interview had resolved by the time the participants completed their questionnaire. Indeed, the interview may have had a therapeutic effect on some participants as they had time to discuss issues that may not have come up within the clinic environment. Alternatively, selfreport QoL questionnaires may underestimate distress because they do not specifically address areas that are problematic for transplant recipients, and respondents may answer self-report questions with what they believe we want to hear.11 Our interview data made it clear that half of the patients in our sample are living with pervasive distress that they do not discuss in clinic. The ubiquitous concern about donors, donor families, and the psychologic and emotional challenges posed by the “gift of life” discourse are a daily part of their lives. These issues are not represented in standard QoL assessment measures. The study is limited by having been conducted in a single setting, although our SF-36 data are consistent with those published previously by our own and other programs.19 –21 Using qualitative methods to assess QoL yielded information that would otherwise have remained invisible through the exclusive use of quantitative QoL questionnaires. Future research studies of QoL of HTRs must consider the role of qualitative research using visual methods as well as mixed methodologies to advance the field. With a richer understanding of HTRs’ experiences, we hope to modify clinical practice to facilitate better patient outcomes.
Disclosure statement This project received peer-reviewed funding from the MultiOrgan Transplant Academic Enrichment Fund of the University Health Network. The authors have no conflicts of interest to disclose.
966
The Journal of Heart and Lung Transplantation, Vol 30, No 8, August 2011
References 1. Taylor DO, Edwards LB, Aurora P, et al. Registry of the International Society for Heart and Lung Transplantation: twenty-fifth official adult transplant report—2008. J Heart Lung Transplant 2008;27:943-56. 2. Cupples S, Dew MA, Grady KL, et al. Report of the Psychosocial Outcomes Workgroup of the Nursing and Social Sciences Council of the International Society for Heart and Lung Transplantation: present status of research on psychosocial outcomes in cardiothoracic transplantation: review and recommendations for the field. J Heart Lung Transplant 2006;25:716-25. 3. Dew M, DiMartini AF. Psychological disorders and distress after adult cardiothoracic transplantation. J Cardiovasc Nurs 2005;20(suppl):S51-66. 4. Kop E. Role of psychological factors in the clinical course of heart transplant patients. J Heart Lung Transplant 2010;29:257-60. 5. Sharp L. Organ transplantation as a transformative experience: anthropological insights into the restructuring of the self. Med Anthropol Q (New Series) 1995;9:357-89. 6. Lock M. Twice dead: organ transplants and the reinvention of death. Berkeley, CA: University of California Press; 2002. 7. Waldby C, Mitchell R. Tissue economies: blood, organs, and cell lines in late capitalism. Durham, NC: Duke University Press; 2006. 8. Shildrick M. The critical turn in feminist bioethics: the case of heart transplantation. Int J Feminist Approach Bioeth 2008;1:28-47. 9. Shildrick M, McKeever P, Abbey S, et al. Troubling dimensions of heart transplantation. Med Humanities 2009;35:35-8. 10. Poole J, Shildrick M, McKeever P, et al. ‘You might not feel like yourself’: On heart transplants, identity and ethics. In: Murray SJ, Holmes D, editors. Critical interventions in the ethics of healthcare. London: Ashgate; 2009:33-44. 11. Ross H, Abbey S, De Luca E, et al. What they say versus what we see:
12.
13.
14. 15. 16. 17.
18.
19.
20.
21.
“hidden” distress and impaired quality of life in heart transplant recipients. J Heart Lung Transplant 2010;29:1142-9. McHorney C, Ware JE, Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993; 31:247-63. Becker M, Erdmann N, Stegemann E, et al. Survival and quality of life in patients with cardiac resynchronization therapy for severe heart failure and in heart transplant recipients within a contemporary heart failure management program. J Heart Lung Transplant 2008;27:746-53. Atkinson T. The stability and validity of quality of life measures. Social Indic Res 1982;10:113-32. Hopman WM, Towheed T, Anastassiades T, et al. Canadian normative data for SF-36 Health Survey. Can Med Assoc J 2000;163:265-71. Cummins RA. The second approximation to an international standard for life satisfaction. Soc Indic Res 1998;43:307-34. Ware JE, Gandek B, Kosinski M, et al. The equivalence of SF-36 summary health scores estimated using standard and country-specific algorithms in 10 countries: results from the IQOLA Project. J Clin Epidemiol 1998;51:1167-70. Ware JE, Kosinski M. SF-36 physical and mental health summary scales: a manual for users of version 1, 2nd edition. Lincoln, RI: Quality Metric; 2001. Politi P, Piccinelli M, Fusar Poli P, et al. Ten years of “extended” life: quality of life among heart transplantation survivors. Transplantation 2004;78:257-63. Goetzman L, Serac N, Ambuhl P, et al. Psychological response and quality of life after transplantation: a comparison between heart, lung, liver and kidney recipients. Swiss Med Wkly 2008;138:477-83. Holtzman S, Abbey SE, Stewart DE, et al. Pain after heart transplantation: prevalence and implications for quality of life. Psychosomatics 2010;51:230-3.