Introduction
Patients’ understanding of their prognosis and the likelihood of benefit with various therapies is an essential component of informed decision-making. 1 – 3 This is especially true for patients with hematologic malignancies who are confronted with challenging decisions balancing the risks and benefits of high dose chemotherapy and hematopoietic stem cell transplantation (HCT). Although HCT carries considerable morbidity and risk of mortality, many patients face almost certain death without undergoing this treatment. 4 – 7 The gravity of such decisions highlights the importance of patient access to accurate information about their prognosis.
Patients’ prognostic understanding plays a role in their medical decision-making. 8 For example, patients’ understanding of the likelihood of achieving a cure is associated with their willingness to accept chemotherapy. 9 – 11 Moreover, patients with advanced solid malignancies who overestimate their chances of survival are more likely to elect aggressive care at the end of life. 12 Enhancing prognostic awareness may potentially empower patients to make informed decisions that are consistent with their preferences, facilitating a patient-centered approach to medical care. 12 , 13
Despite its importance, very little research has focused on prognostic understanding in patients with hematologic malignancies and those undergoing HCT. 14 , 15 In fact, the majority of data on prognostic awareness come from surveys of patients with incurable solid tumors, revealing marked misperceptions in prognostic understanding. 16 , 17 Moreover, studies are lacking in comparing the perceptions of patients, family caregivers (FC), and physicians regarding the likelihood of cure with HCT. As FC often play a pivotal role in helping patients make decisions regarding their care, 18 , 19 a better understanding of their prognostic awareness is warranted.
Data are also lacking examining the relationship between patients’ prognostic understanding and their QOL and mood. 8 In a study of patients with advanced cancer, those who acknowledged the terminal nature of their illness reported lower QOL and worse anxiety compared to those with overly optimistic and inaccurate prognostic understanding. 8 Patients undergoing HCT experience substantial distress during a prolonged and socially isolating hospitalization. 5 , 7 , 20 – 23 Therefore, the relationship between prognostic awareness, QOL, and mood in these individuals and their families is particularly important, where the physical and psychological treatment burden is high.
We recently completed a prospective longitudinal study assessing patients’ QOL and mood during hospitalization for HCT. 24 In this study, we also sought to evaluate both patient and FC preferences for receiving prognostic information, and compare their prognostic understanding to the treating oncologist’s perception of prognosis. Furthermore, we conducted an exploratory analysis to examine the association of patients’ and FCs’ prognostic understanding with their QOL and mood.
Methods
Participants
In this study, we included English-speaking patients (age ≥ 18) with hematologic malignancies admitted to Massachusetts General Hospital for HCT. We enrolled consecutively eligible participants within three transplant cohorts (1) autologous HCT (n = 30); (2) myeloablative allogeneic HCT (n=30); and (3) reduced intensity allogeneic HCT (n=30). We excluded patients with significant psychiatric or other comorbidities, which the treating oncologist believed impaired their ability to provide informed consent. We asked enrolled patients to identify a FC (a relative or a friend who either lived with the patient or had in-person contact with him/her at least twice per week) and invited this person to participate in the FC portion of this study. Patients without a willing or available FC were still eligible to participate.
Study Design and Procedures
This study was approved by the Dana Farber Harvard Cancer Center Institutional Review Board. We identified eligible patients with a planned HCT admission during the weekly bone marrow transplant team meeting. A trained research assistant obtained permission by email from the treating oncologist to approach eligible patients and their FC within 72 hours of admission. Willing participants (patients and FC) provided written informed consent and completed baseline questionnaires approximately six days prior to transplant (day -6). We then followed participants longitudinally and obtained self-reported measures weekly during hospitalization.
Study Measures
Information Preferences and Prognostic Understanding
We assessed information preferences and prognostic understanding using the 10-item Prognosis and Treatment Perception Questionnaire (PTPQ), which assesses patient beliefs regarding 1) likelihood of cure, 2) the importance of knowing about prognosis, and 3) preferences for information about treatment. 8 , 25 We previously performed cognitive interviews with patients to ensure the content validity, readability, and acceptability of the PTPQ and have utilized it in prior studies. 8 We administered the PTPQ to patients and FC at the time of admission for HCT (6 days prior to transplant).
We used specific items from the PTPQ to evaluate patients’ and FC information preferences. For example, participants reported their preference for receiving information about diagnosis and treatment (“prefer not to hear a lot of details”, “want to hear details only in certain situations,” or “want to hear as many details as possible”). We also asked participants to rate the importance of knowing about the patients’ prognosis on a 5-point scale (ranging from “extremely important”, to “not at all important”). Additionally, participants reported the frequency of having a conversation with the oncologist about prognosis on a 5-point scale (ranging from “never”, to “very often”). We dichotomized participant’s responses into two categories: 1) very often or often; or 2) less often or never. Finally, we asked participants whether they had a discussion with the oncologist regarding end-of-life care (“yes” or “no”).
Finally, the patient, FC, and the treating oncologist, each reported their perceptions of the patients’ overall prognosis using a single item in which they rated the likelihood that he or she will be cured of their cancer on a 7-point scale (ranging from “very unlikely/ <10% ” to “extremely likely/ > 90% ”). We grouped responses into three categories: 1) extremely or very likely to be cured / 75%–100%; 2) moderately or somewhat likely to be cured/ 25%–74%); and 3) Unlikely to be cured / 0–24%. We then categorized patients and FC as either having a concordant prognostic understanding if their responses were concordant with the oncologist’s response or discordant prognostic understanding if their responses were inconsistent with the oncologist’s assessments.
Demographic and clinical factors
Each participant completed a demographic questionnaire that included age, gender, race, ethnicity, marital status, income, and educational level. We reviewed patients’ electronic medical records to obtain data on cancer diagnosis, Eastern Cooperative Oncology Group (ECOG) performance status, and comorbidities as measured by the HCT-Comorbidity Index. 26
Quality of Life and Fatigue
We used the Functional Assessment of Cancer Therapy- BMT (FACT-BMT) questionnaire to assess patients’ QOL. 27 The FACT-BMT contains 47 items that comprise 5 subscales assessing physical, functional, emotional, social well-being, and Bone Marrow Transplant (BMT) specific concerns during the past week. Higher total and subscale scores indicate better QOL. We also calculated the Trial Outcome Index (TOI), which is the sum of the scores on the physical well-being, functional well-being, and BMT subscales of the FACT-BMT. To measure patients’ fatigue, we used the FACT-Fatigue subscale, which consists of 13-items about fatigue symptoms during the past week. 28 Lower scores on the FACT-Fatigue subscale indicate greater fatigue.
To evaluate QOL in FC, we utilized the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), which measures physical functioning, role functioning-physical, bodily pain, general health, vitality, social functioning, role functioning-emotional, and mental health. 29 We also calculated two summary scales derived from the SF-36: Physical Component Scale (PCS) and Mental Component Scale (MCS). 29
Depression and Anxiety
We measured participants’ (patients and FC) anxiety and depression symptoms with the 14-item Hospital Anxiety and Depression Scale (HADS). The HADS consists of two subscales assessing anxiety and depression symptoms in the past week, with subscale scores ranging from 0 (no distress) to 21 (maximum distress). 30 We also assessed mood using the Patient Health Questionnaire 9 (PHQ-9). The PHQ-9 is a nine-item measure that detects symptoms of major depressive disorder according to the criteria of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). 31
Attrition and missing data
Patients admitted to our institution for autologous and reduced intensity HCT are hospitalized on average for 1.5 weeks after their transplant, and those undergoing myeloablative HCT are hospitalized for 2.5–3 weeks after transplantation. Therefore, we analyzed data up to day +8 (8 days after HCT) for all participants in this analysis. Only 6.7% (6/90) of patients were missing day +1 evaluation, and 20% (18/90) were missing day +8 evaluation. Most missing evaluations (91%) were due deterioration in patients’ health status and being too symptomatic per self-report. We used several methods to compute missing QOL data and compared the results to those without imputations. Imputations involved (1) simple mean imputation and (2) last observation carried forward. We also utilized maximum likelihood estimation for missing data. As our results were similar with the different methods, we used the conservative approach of carrying last value forward to account for all missing patient and FC reported outcomes since QOL data were not missing at random.
Statistical Analysis
We first calculated descriptive statistics, including means or medians for continuous variables depending on the normality of the data, and proportions for categorical variables. For all analyses, we considered two-sided p-values < 0.05 to be statistically significant.
To examine prognostic and treatment understanding, we reported responses (frequencies) to PTPQ items, including perceptions of the likelihood of cure with HCT. We compared participant-provider responses using the chi square test. We measured agreement of participants and provider responses using the κ coefficient.
Finally, we explored unadjusted associations between prognostic understanding and participant’s demographic/clinical factors by conducting chi-square and Fisher exact tests for categorical variables as well as t-tests for continuous variables. Using linear mixed effect models adjusting for potential confounders identified in unadjusted analyses (age, type of HCT, and comorbidities), we examined the relationship between participants’ prognostic understanding and the following outcomes: patient’s QOL (FACT-BMT and TOI), patient’s fatigue (FACT-Fatigue), FC QOL (PCS and MCS), patients’ and FC psychological distress (HADS-depression, HADS-anxiety, and PHQ-9).
Results
Participants Characteristics
We enrolled 97% (90/93) of consecutively eligible patients admitted for autologous (n=30), myeloablative allogeneic (n=30), and reduced intensity allogeneic (n=30) HCT between 7/1/2012 and 3/10/2014. We also enrolled 47 FC and most (72.3%, 34/47) were a partner or spouse to the patient. Twenty one (23%) patients did not identify a FC that they were willing to have us approach for study participation. The remaining 24% (n=22) of FC either refused to participate or were not available during the allotted recruitment window to consent for study participation. Table 1 and Table 2 depict patients and FC characteristics, respectively. Patients were primarily white (91.1%, 82/90). The majority of the sample was male (58.9%, 53/90), and 50% (45/90) had a diagnosis of acute myeloid leukemia or myelodysplastic syndrome. The median age of patients and FC was 58.1 and 55.8, respectively.
Information Preferences and Prognostic Understanding
Most patients (74.4%, 67/90) and FC (70.2%, 33/47) desired as much information as possible about their diagnosis and treatment [ Figure 1A ]. Furthermore, 88.9% (80/90) of patients and 87.2% (41/47) of FC endorsed that it is ‘extremely’ or ‘very’ important to know about prognosis [ Figure 1B ]. However, only 51.1% (47/90) of patients and 46.8% (22/47) of FC reported that they discussed the patients’ prognosis with the treating oncologist frequently [ Figure 2A ]. The majority of patients (86.7%, 78/90) and FC (85.1%, 40/47) stated that they did not discuss end-of-life care with the treating oncologist.
Figure 2B depicts the perceptions of patients, their FC, and the treating oncologists regarding the likelihood of cure with HCT. The majority of patients (77.6%, 66/85) reported a more optimistic assessment of their prognosis, compared to their oncologist (P < 0.0001). The concordance rate between patients’ and their oncologists’ prognostic perception was low (k = 0.009, p = 0.74). Similarly, 71.7% (33/46) of FC reported a more optimistic assessment of their prognosis, compared to the oncologists (P < 0.0001). The concordance rate between FC and oncologists’ prognostic perception was similarly low (k = 0.04, p = 0.25). The majority of patients and FC (76.6%, 36/47) reported concordant views of the patients’ prognosis (k = 0.56, P < 0.0001). All patients and FC with discordant prognostic understanding compared to their oncologists reported a more optimistic perception of their prognosis compared to the oncologists.
Association of Prognostic Understanding with Demographic and Clinical Factors
Patients whose prognostic understanding was concordant with their oncologist did not differ by age, gender, education, income, comorbidities, ECOG performance status, cancer diagnosis, or relationship status, compared with those with discordant and more optimistic prognostic understanding. Similarly, there were no differences in age, gender, race, education, or relationship to the patient between FC with concordant (versus discordant) prognostic understanding.
Association of Prognostic Understanding with Quality of Life and Psychological Outcomes
After adjusting for potential confounders in multivariable analysis, patients whose prognostic understanding as concordant with their oncologist reported significantly lower QOL (FACT-BMT and FACT-TOI), and higher fatigue (FACT-Fatigue) throughout their hospitalization [ Table 3 ]. Furthermore, patients with a concordant prognostic understanding reported significantly greater depressive symptoms (HADS-Depression and PHQ-9, Table 3 ) and a steeper increase in these symptoms during the transplant admission (β = 1.2, 95% CI 0.90–1.5, P < 0.0001).
Finally, across all domains of the SF-36, FC did not differ significantly between those with concordant versus discordant prognostic understanding in multivariable analysis [ Table 4 ]. FC prognostic understanding was not associated with FC depression or anxiety [ Table 4 ].
Discussion
Despite the high value patients and families place on the importance of knowing about prognosis, the majority reported an overly optimistic assessment of the likelihood of cure, compared with the oncologist. Our findings highlight major gaps in prognostic understanding among patients with hematologic malignancies undergoing HCT, similar to what has been reported in patients with solid tumors. 17 , 32 , 33 Importantly, patients with concordant prognostic understanding with their oncologist reported lower QOL, and greater symptoms of fatigue and depression during their hospitalization for HCT.
The extent of the decrement in QOL and increase in both fatigue and depression during HCT hospitalization among patients with concordant prognostic perception with their oncologists are notable. While the medical community has focused on the value of prognostic disclosure, 17 our findings stress the importance of studying better ways to support patients who do comprehend the likely outcome of their HCT. Patients who accept that they have a low chance of being cured with HCT may have a harder time enduring the symptoms during hospitalization, thereby leading to higher levels of distress. While our findings do not dispute the importance of prognostic disclosure, they do highlight the need to explore the complex relationship between prognostic understanding and patients’ QOL and mood.
While it is important for clinicians to provide patients and families with accurate prognostic information when they are making decisions regarding HCT, our results question whether clinicians should emphasize patients’ prognosis during the hospitalization period. Once a decision is made to proceed with HCT, there may be a benefit to focusing on enhancing coping strategies and building an optimistic framework while patients undergo intensive therapy during a prolonged hospitalization. On the other hand, prognostic awareness may be especially important for patients making decisions regarding alternative treatment options and weighing the potential risks and benefits of HCT. Future efforts should assess the optimal timing for prognostic disclosure in patients undergoing HCT and whether there are times in the illness trajectory when the emphasis should be placed on augmenting patients’ coping with their illness.
To our knowledge, this is the first study to examine FC’s prognostic understanding and its concordance with that of the patient and oncologist. FC and patients reported highly concordant perceptions of the patients’ prognosis, which were optimistic compared to the oncologists’ estimation of the likelihood of cure. Therefore, prognostic misperceptions affect both patients and their families alike, further impeding their ability to make informed decisions. It is possible that patients and FC are reinforcing each other’s misperceptions, further impeding their ability to accurately understand the patients’ prognosis. As family caregivers play a central role in the care of HCT patients, 18 , 19 addressing gaps in their prognostic understanding may have important implications on patients’ medical care and future decision-making.
Several of our findings are consistent with the results of previous research. In a study conducted in the 1990s, patients undergoing HCT reported an optimistic estimation of their disease-free-survival, compared to their physicians. 15 Our findings in the modern era of HCT indicate that we have not made any progress in improving patients’ prognostic awareness. Another study in patients with advanced gastrointestinal cancers reported an association between patients’ acknowledgement of their terminal illness with worse QOL and higher anxiety. 8 We report a similar association between less optimistic prognostic understanding and lower QOL and higher psychological distress in patients with hematologic malignancies. While these associations do not imply causation, detecting them in two different populations of cancer patients is intriguing and worthy of further exploration.
Our study has several important limitations. First, we included 90, mostly white patients, drawn from a single transplant center and thus our findings may not be generalizable to minority groups and patients in other geographic areas or transplant centers with difference practices. Second, although our results suggest an association between prognostic understanding and QOL and mood, the data do not allow us to determine the causality or direction of this association. Third, we used the oncologists’ assessment of the patients’ prognosis as the comparator to assess participants’ prognostic understanding. Studies have shown oncologists also hold overly optimistic perceptions of their patients’ prognosis, 34 thus we may be underestimating the frequency of prognostic misperceptions among study participants. Fourth the FC enrolled in this study may or may not have been present during the initial HCT consultation when prognosis is usually discussed, and therefore may not have heard the oncologist’s perception of the patient’s prognosis. Fifth, the PTPQ has not been validated in the HCT population. Lastly, the use of imputation methods may introduce bias, as patients with missing patient-reported measures are more likely to be symptomatic. However, we utilized a conservative approach that biases the results towards the null hypothesis.
In this study, we demonstrated that the majority of patients undergoing HCT and their families report an overly optimistic perception of the patients’ prognosis, which is highly discordant with the treating oncologists’ estimation of the likelihood of cure. This discrepancy in prognostic understanding likely impedes the abilities of patients and families to make informed decisions, including weighing the risk and benefit of HCT. It is also noteworthy that patients with a less optimistic understanding of their prognosis reported lower QOL, and worse fatigue and depression. These patients might benefit from additional psychosocial support and symptom management during their hospitalization for HCT. Future research should focus on optimizing ways to enhance prognostic awareness in patients and families, especially as they make decisions regarding the pursuit of HCT, while providing the necessary psychological care to facilitate effective coping during the transplant process.
Supplementary Material
Acknowledgment
Research Support: This work was supported by funds from the MGH Cancer Center and K24 CA 181253 (Temel).
Conflict of Interest: None
References
1 Jonsen ARSM Winslade W Clinical ethics, 5th edition 2002 5th edition edn New York McGraw-Hill
2 Faden R Beauchamp TL A History and Theory of Informed Consent 1986 New York Oxford University Press
3 Veatch RM Abandoning informed consent The Hastings Center report 1995 25 2 5 12 e-pub ahead of print 1995/03/01 7782200
4 Curtis RE Rowlings PA Deeg HJ Shriner DA Socie G Travis LB Solid cancers after bone marrow transplantation The New England journal of medicine 1997 336 13 897 904 e-pub ahead of print 1997/03/27; doi: 10.1056/NEJM199703273361301 9070469 10.1056/NEJM199703273361301
5 Duell T van Lint MT Ljungman P Tichelli A Socie G Apperley JF Health and functional status of long-term survivors of bone marrow transplantation. EBMT Working Party on Late Effects and EULEP Study Group on Late Effects. European Group for Blood and Marrow Transplantation Annals of internal medicine 1997 126 3 184 192 e-pub ahead of print 1997/02/01 9027268 10.7326/0003-4819-126-3-199702010-00002
6 Gratwohl A Baldomero H Frauendorfer K Urbano-Ispizua A EBMT activity survey 2004 and changes in disease indication over the past 15 years Bone marrow transplantation 2006 37 12 1069 1085 e-pub ahead of print 2006/06/08; doi: 1705377 [pii] 10.1038/sj.bmt.1705377 16757972 10.1038/sj.bmt.1705377
7 Lee SJ Joffe S Kim HT Socie G Gilman AL Wingard JR Physicians' attitudes about quality-of-life issues in hematopoietic stem cell transplantation Blood 2004 104 7 2194 2200 e-pub ahead of print 2004/06/17; doi: 10.1182/blood-2003-07-2430 2003-07-2430 [pii] 15198954 10.1182/blood-2003-07-2430
8 El-Jawahri A Traeger L Park ER Association among prognostic understanding, quality of life, and mood in patients with advanced cancer Cancer 2013 in press. 10.1002/cncr.28369 24122784
9 Brundage MD Davidson JR Mackillop WJ Trading treatment toxicity for survival in locally advanced non-small cell lung cancer Journal of clinical oncology : official journal of the American Society of Clinical Oncology 1997 15 1 330 340 e-pub ahead of print 1997/01/01 8996160 10.1200/JCO.1997.15.1.330
10 Hirose T Yamaoka T Ohnishi T Sugiyama T Kusumoto S Shirai T Patient willingness to undergo chemotherapy and thoracic radiotherapy for locally advanced non-small cell lung cancer Psycho-oncology 2009 18 5 483 489 e-pub ahead of print 2008/10/24; doi: 10.1002/pon.1450 18942662 10.1002/pon.1450
11 Silvestri G Pritchard R Welch HG Preferences for chemotherapy in patients with advanced non-small cell lung cancer: descriptive study based on scripted interviews Bmj 1998 317 7161 771 775 e-pub ahead of print 1998/09/18 9740561 10.1136/bmj.317.7161.771 PMC28665
12 Weeks JC Cook EF O'Day SJ Peterson LM Wenger N Reding D Relationship between cancer patients' predictions of prognosis and their treatment preferences JAMA : the journal of the American Medical Association 1998 279 21 1709 1714 e-pub ahead of print 1998/06/12; doi: joc71098 [pii] 9624023 10.1001/jama.279.21.1709
13 Mead N Bower P Patient-centredness: a conceptual framework and review of the empirical literature Social science & medicine 2000 51 7 1087 1110 e-pub ahead of print 2000/09/27 11005395 10.1016/s0277-9536(00)00098-8
14 Stiff PJ Miller LA Mumby P Kiley K Batiste R Porter N Patients' understanding of disease status and treatment plan at initial hematopoietic stem cell transplantation consultation Bone marrow transplantation 2006 37 5 479 484 e-pub ahead of print 2006/01/26; doi: 1705264 [pii] 10.1038/sj.bmt.1705264 16435021 10.1038/sj.bmt.1705264
15 Lee SJ Fairclough D Antin JH Weeks JC Discrepancies between patient and physician estimates for the success of stem cell transplantation JAMA : the journal of the American Medical Association 2001 285 8 1034 1038 e-pub ahead of print 2001/03/07 11209174 10.1001/jama.285.8.1034
16 Temel JS Greer JA Admane S Gallagher ER Jackson VA Lynch TJ Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2011 29 17 2319 2326 e-pub ahead of print 2011/05/11; doi: 10.1200/JCO.2010.32.4459 21555700 10.1200/JCO.2010.32.4459
17 Weeks JC Catalano PJ Cronin A Finkelman MD Mack JW Keating NL Patients' expectations about effects of chemotherapy for advanced cancer The New England journal of medicine 2012 367 17 1616 1625 e-pub ahead of print 2012/10/26; doi: 10.1056/NEJMoa1204410 23094723 10.1056/NEJMoa1204410 PMC3613151
18 Shin DW Cho J Roter DL Kim SY Sohn SK Yoon MS Preferences for and experiences of family involvement in cancer treatment decision-making: patient-caregiver dyads study Psycho-oncology 2013 22 11 2624 2631 e-pub ahead of print 2013/07/31; doi: 10.1002/pon.3339 23893390 10.1002/pon.3339
19 Zhang AY Siminoff LA The role of the family in treatment decision making by patients with cancer Oncology nursing forum 2003 30 6 1022 1028 e-pub ahead of print 2003/11/07; doi: 10.1188/03.ONF.1022-1028 14603359 10.1188/03.ONF.1022-1028
20 Pidala J Anasetti C Jim H Quality of life after allogeneic hematopoietic cell transplantation Blood 2009 114 1 7 19 e-pub ahead of print 2009/04/02; doi: blood-2008-10-182592 [pii] 10.1182/blood-2008-10-182592 19336756 10.1182/blood-2008-10-182592 PMC2710956
21 Fife BL Monahan PO Abonour R Wood LL Stump TE Adaptation of family caregivers during the acute phase of adult BMT Bone marrow transplantation 2009 43 12 959 966 e-pub ahead of print 2008/12/24; doi: 10.1038/bmt.2008.405 19104493 10.1038/bmt.2008.405
22 Siston AK List MA Daugherty CK Banik DM Menke C Cornetta K Psychosocial adjustment of patients and caregivers prior to allogeneic bone marrow transplantation Bone marrow transplantation 2001 27 11 1181 1188 e-pub ahead of print 2001/09/12; doi: 10.1038/sj.bmt.1703059 11551029 10.1038/sj.bmt.1703059
23 Foxall MJ Gaston-Johansson F Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients J Adv Nurs 1996 24 5 915 923 e-pub ahead of print 1996/11/01 8933250 10.1111/j.1365-2648.1996.tb02926.x
24 El-Jawahri A Traeger L Kuzmuk K Qualit yof life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation Cancer 2014 in press. 10.1002/cncr.29149 PMC4352120 25469752
25 Mack JW Wolfe J Grier HE Cleary PD Weeks JC Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2006 24 33 5265 5270 e-pub ahead of print 2006/11/23; doi: 24/33/5265 [pii] 10.1200/JCO.2006.06.5326 17114660 10.1200/JCO.2006.06.5326
26 Sorror ML Maris MB Storb R Baron F Sandmaier BM Maloney DG Hematopoietic cell transplantation (HCT)-specific comorbidity index: a new tool for risk assessment before allogeneic HCT Blood 2005 106 8 2912 2919 e-pub ahead of print 2005/07/05; doi: 10.1182/blood-2005-05-2004 15994282 10.1182/blood-2005-05-2004 PMC1895304
27 McQuellon RP Russell GB Cella DF Craven BL Brady M Bonomi A Quality of life measurement in bone marrow transplantation: development of the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) scale Bone marrow transplantation 1997 19 4 357 368 e-pub ahead of print 1997/02/02; doi: 10.1038/sj.bmt.1700672 9051246 10.1038/sj.bmt.1700672
28 Santana MJ Au HJ Dharma-Wardene M Hewitt JD Dupere D Hanson J Health-related quality of life measures in routine clinical care: can FACT-fatigue help to assess the management of fatigue in cancer patients? Int J Technol Assess Health Care 2009 25 1 90 96 e-pub ahead of print 2009/01/08; doi: S0266462309090126 [pii] 10.1017/S0266462309090126 19126256 10.1017/S0266462309090126
29 Brazier JE Harper R Jones NM O'Cathain A Thomas KJ Usherwood T Validating the SF-36 health survey questionnaire: new outcome measure for primary care Bmj 1992 305 6846 160 164 e-pub ahead of print 1992/07/18 1285753 10.1136/bmj.305.6846.160 PMC1883187
30 Zigmond AS Snaith RP The hospital anxiety and depression scale Acta psychiatrica Scandinavica 1983 67 6 361 370 e-pub ahead of print 1983/06/01 6880820 10.1111/j.1600-0447.1983.tb09716.x
31 Kroenke K Spitzer RL Williams JB The PHQ-9: validity of a brief depression severity measure Journal of general internal medicine 2001 16 9 606 613 e-pub ahead of print 2001/09/15; doi: jgi01114 [pii] 11556941 10.1046/j.1525-1497.2001.016009606.x PMC1495268
32 Gattellari M Voigt KJ Butow PN Tattersall MH When the treatment goal is not cure: are cancer patients equipped to make informed decisions? Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2002 20 2 503 513 e-pub ahead of print 2002/01/12 11786580 10.1200/JCO.2002.20.2.503
33 Hagerty RG Butow PN Ellis PA Lobb EA Pendlebury S Leighl N Cancer patient preferences for communication of prognosis in the metastatic setting Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2004 22 9 1721 1730 e-pub ahead of print 2004/05/01; doi: 10.1200/JCO.2004.04.095 15117995 10.1200/JCO.2004.04.095
34 Krishnan M Temel JS Wright AA Bernacki R Selvaggi K Balboni T Predicting life expectancy in patients with advanced incurable cancer: a review The journal of supportive oncology 2013 11 2 68 74 e-pub ahead of print 2013/08/24 23967494 10.12788/j.suponc.0004