Physical and psychosocial functioning in patients undergoing ... - Nature

Bone Marrow Transplantation, (1997) 20, 497–502  1997 Stockton Press All rights reserved 0268–3369/97 $12.00

Physical and psychosocial functioning in patients undergoing autologous bone marrow transplantation – a prospective study L Wettergren1,2, A Langius1, M Bjo¨rkholm2 and H Bjo¨rvell1 1

Centre of Caring Sciences North and 2Division of Hematology and Infectious Diseases, Departement of Medicine, Karolinska Institute and Hospital, Stockholm, Sweden

Summary: The main purpose of this study was to evaluate prospectively physical and psychosocial functioning in patients with malignant blood disorders undergoing autologous bone marrow transplantation (ABMT), and relate the findings to the patients’ coping capacity. Twenty patients participated in the study before ABMT, 14 survivors at the 2–6 month follow-up and 12 at the 8–12 month follow-up. Three standardized questionnaires were used: the EORTC QLQ-C30, the Hospital Anxiety and Depression (HAD) scale and the Sense of Coherence scale. No significant changes over time were found in the scores of the QLQ-C30 and HAD. Impaired social function, fatigue, dyspnea, financial problems and emotional distress were the most frequently reported deficits. Functional limitations were related to less successful coping. The results indicate that the patients in this study perceive their physical and psychosocial functioning as rather good before, as well as up to 1 year after the ABMT, as measured with the instruments used. Keywords: bone marrow transplantation; EORTC; psychosocial functioning; physical functioning; sense of coherence; quality of life

Use of high-dose chemotherapy with or without total body irradiation (TBI) followed by autologous bone marrow transplantation (ABMT) is becoming more common in the treatment of patients with hematologic and solid tumors. Such intensive therapy is associated with a number of early and late complications including nausea and vomiting, diarrhea, loss of appetite and weight, fatigue, sleep disturbances, pain, frequent infections, infertility and psychological distress.1–4 Recently, an increasing focus on aspects of quality of life in this group of patients has been documented and in most follow-up studies patients report their longterm adjustment and quality of life as rather good.1,3,5 However, most published studies are retrospective and limited to the evaluation of patients receiving allografts. Andrykowski et al4 compared quality of life between autologous and allogeneic recipients in a retrospective study and found Correspondence: L Wettergren, Centre of Caring Sciences North, Borgma¨starvillan, Karolinska Hospital, S-171 76 Stockholm, Sweden Received 21 February 1997; accepted 22 May 1997

that allogeneic recipients reported poorer quality of life. Thus, there is an obvious need for prospective studies of patients undergoing ABMT, including a proper follow-up period. To the best of our knowledge only one prospective study concerning quality of life in patients with malignant blood diseases during the first year after ABMT has been published. In that report a study-specific instrument was used and the patients were assessed every 90 days following ABMT.1 The patients reported weight and appetite loss, sleep difficulties and problems concerning changed body image at 90 days post-transplant, but by 1 year the symptoms had decreased and quality of life increased. Furthermore, at that time, over 75% of the patients were back at work.1 Coping with stressful situations has recently been emphasized as an important factor in explaining differences in patients’ perception of their life situation when affected by a life-threatening disease.6–8 Coping can be studied in a general perspective as a prerequisite in the coping process.8,9 Antonovsky8 has described the concept sense of coherence (SOC), as a preparedness for coping with stressors. He defines coping as ‘a global orientation that expresses the extent to which one has a pervasive, enduring though dynamic feeling of confidence that (1) the stimuli deriving from one’s internal and external environments in the course of living are structured, predictable, and explicable; (2) the resources are available to one to meet the demands posed by these stimuli; and (3) these demands are challenges, worthy of investment and engagement’ (Ref. 8, p 19). These three components are termed: comprehensibility, manageability and meaningfulness. It is hypothesized that the stronger the SOC, the more successful the coping. The theoretical model suggests that an individual’s SOC is a stable trait showing only minor fluctuations in adulthood.8 The concept has been operationalized into the SOC scale. Strong SOC as measured by the scale has shown to be positively related to self-rated health and quality of life.10–12 Furthermore, the SOC score was found to be stable over time.10 Therefore taking an individual’s general SOC into account may be of help in the understanding of the support needed by patients in relation to their disease. The SOC scale has not been previously used in studies of ABMT survivors. In the present study, physical and psychosocial functioning were prospectively evaluated in patients with malignant blood disorders undergoing ABMT. In addition, the findings were related to coping capacity.

Physical and psychosocial function following ABMT L Wettergren et al

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Materials and methods Sample Patients entered the study between January 1993 and November 1994. Twenty (12 men and eight women) of 24 consecutive patients listed for autologous bone marrow and blood stem cell transplantation were included. Four patients were excluded: due to insufficient knowledge of the Swedish language (n = 2), poor mental condition (n = 1) and for organizational reasons (n = 1). The median age was 36 (range 17–54) years. The underlying hematologic malignancy was Hodgkin’s disease (n = 1), non-Hodgkin’s lymphoma (n = 5), acute myeloblastic leukemia (n = 5), acute lymphoblastic leukemia (n = 4), chronic myeloblastic leukemia (n = 3), myeloma (n = 1) and plasmacytoma (n = 1). All patients received preparatory high-dose chemotherapy, 14 in combination with TBI.13–15 The 20 eligible patients were evaluated before ABMT and 14 of these participated in the first follow-up, 2–6 months after ABMT. The reasons for not responding to follow-up 1 were death (n = 3), disease- and treatment-related (n = 1) and refusal (n = 2). Follow-up 1 took place after discharge for all the participants. In the second follow-up, 6 months after follow-up 1, 12 patients participated. The reasons for not responding to follow-up 2 were disease- and treatment-related (n = 1) and refusal (n = 1). Instruments Three self-administered questionnaires were used to collect data. The EORTC Quality-of-Life Questionnaire (QLQC30): This questionnaire was developed by the European Organization for Research and Treatment of Cancer Study Group and consists of 30 items. It is a multidimensional, cancer-specific, patient-based and self-administered instrument developed mainly for use in clinical trials of patients with cancer.16 The QLQ-C30 is available in several languages, has been widely used in Europe as well as in the USA and shows acceptable reliability and validity.16–18 It measures physical function (five items), role function (two items), cognitive function (two items), social function (two items) and emotional function (four items). There are three symptom scales (fatigue, pain and nausea/vomiting) and a global health/quality-of-life (QOL) scale (two items). The symptoms appetite loss, sleeplessness, dyspnea, constipation and diarrhea and the perceived financial impact of the disease and treatment are measured by single items. Three response formats are used: the physical and role function scales are answered with ‘yes’ or ‘no’ and the global health/QOL scale is answered in a response format ranging from 1 (very poor) to 7 (excellent). All other items have four response choices ranging from 1 to 4 with the alternatives ‘not at all’, ‘a little’, ‘some’ and ‘very much’. Respondents are instructed to report their situation during the previous week. As recommended by the EORTC study group all the scales and item scores in QLQ-C30, were linearly transformed to a 0 to 100 points scale.19 For the five functional

scales and the global health/QOL scale, item responses were coded so that a higher score represents a better level of functioning. The symptom-oriented scales and items are reversed, a higher score corresponds to a higher level of symptoms. The Hospital Anxiety and Depression (HAD) scale: The HAD scale measures emotional distress.20 Seven items concern depression and seven anxiety (14 items). The four response choices reflect an increasing level of emotional distress. The total score in each scale ranges from 0 (no sign of distress) to 21 (maximum level of distress). The constructors of the scale recommend a cut-off level of 8– 10 points to identify potential clinical cases of anxiety and depression (hereafter referred as case). In this study we chose the lower cut-off level for case (>8 points). The HAD scale has shown satisfactory reliability and validity in screening clinically significant anxiety and depression.21–24 The Sense of Coherence (SOC) scale: The SOC scale measures overall capacity to cope with stressful life situations.8 Respondents are requested to mark their answer choice for each item on a seven-point scale with two anchoring responses (eg never and very often). The total sum ranges from 13 to 91 points; the higher the score the higher the SOC. An example of an item is: ‘Has it happened in the past that you were surprised by the behavior of people whom you thought you knew well’? The SOC scale has been translated into Swedish and has proved to be psychometrically sound.10,12,25 Procedure The research protocol was approved by the Ethics Committee of the Karolinska Hospital. The patients were invited to participate in the study by one of the authors (LW). Written information about the study was given to the patients in which voluntariness was stressed and confidentiality guaranteed. The QLQ-C30, HAD and SOC scales were answered the week before the start of high-dose treatment. At the followups QLQ-C30 and HAD scales were applied. The time for follow-up 1 varied due to the health care organization, all but two patients being evaluated between 4 and 6 months after ABMT. Follow-up 2 was performed 6 months after follow-up 1. At the follow-ups the questionnaires and an explanatory letter were sent to patients together with a stamped return envelope. Internal failure in response Two patients did not complete all subscales in the EORTC QLQ-C30 and another patient did not answer all of the items in the SOC scale. Statistical methods Most of the scales in the EORTC QLQ-C30 are not normally distributed and therefore non-parametric statistical methods were used. To test differences over time, Friedman’s two-way analysis of variance was used. Differences

Age and gender were not significantly related to the scores on the HAD and SOC scales. There were few significant differences between men and women regarding the scores of the EORTC QLQ-C30. Before ABMT, men (n = 8) had a significantly higher score in emotional function (P , 0.05) and in nausea/vomiting (P , 0.05) than women (n = 12). At follow-up 1, women (n = 10) showed higher scores in role function (P , 0.05) and cognitive function (P , 0.01) than men (n = 4). At follow-up, 2 women (n = 9) reported less diarrhea (P , 0.01) than men (n = 3). Higher score represents better functioning. Age was significantly negatively correlated to the subscale cognitive function at follow-up 2 (r = −0.68, P , 0.05). Thus, the older the patients the worse they rated cognitive function. Comparison between responders and non-responders The patients who participated in the three measurements (n = 12) and those who became non-responders at follow-up (n = 8) formed two groups. The baseline scores were compared and no significant differences were found between the two groups except for the pain subscale (P , 0.05) and the item regarding financial impact (P , 0.05) in QLQC30, for which those who did not complete the investigation reported more problems. The EORTC QLQ-C30 The rated median scores in the QLQ-C30 functioning scales were high before ABMT and did not significantly change over time (Figure 1). However, impairments were recorded in the scales measuring social function on all three measurement occasions, as well as in role function and global health/QOL at follow-up 1. Patients scored low presence of symptoms on all three occasions (Table 1). No significant differences in the QLQ-

80

80

60

60

Score

100

40

40

0 Physical function

Role function 100

80

80

60

60

Score

100

40 20

40 20

0

0 Emotional function

Cognitive function

100

100

80

80

60

60

Score

Score

499

20

0

Results Age and gender

100

20

Score

between groups were tested with the Mann–Whitney U test and correlations by using the Spearman rank-order correlation coefficient. Parametric statistical methods were used when evaluating the SOC and HAD scales as they were approximately normally distributed. Differences over time were tested with ANOVA repeated measures, and for comparisons between groups Student’s t-test was used. Pearson’s correlation coefficient was used. Descriptive data include all patients for whom data were available at each assessment point. In the analysis over time only patients for whom data were available on all three assessments were included. The level of statistical significance was set at P < 0.05.26 Cronbach’s alpha coefficient was used to assess internal consistency in all instruments. Coefficients .0.70 are suggested for group-level comparisons to reflect good internal consistency of an instrument.26 The alpha level reaches a lower value if the items are few.

Score


40 20

40 20

0

0 Social function

Global health/QOL

Figure 1 Descriptive statistics of EORTC QLQ-C30 functioning scales before ABMT ( ), at follow-up 1 ( ) and at follow-up 2 ( ). Boxes include the variable distribution between the 75th and the 25th percentile, with the thick line in the boxes representing the median value. The lines extending above and below the boxes indicate the 90th and 10th percentile, respectively. Outliers are designated with (p) on the plot. When one percentile coincides with another and/or with the median, only one line is shown. The higher the score the better the perceived functioning.

C30 symptom scales or in the single items were found between before ABMT, follow-up 1 and follow-up 2. For most of the subscales in the EORTC QLQ-C30, Cronbach’s alpha coefficients were above 0.70. No one was below 0.45. The HAD scale The mean score, before ABMT, for the subscale anxiety was 7.1 (s.d. 4.9) and for depression 5.1 (s.d. 3.4) points. The corresponding scores at follow-up 1 were 5.7 (s.d. 4.6) and 5.0 (s.d. 3.1) points, and at follow-up 2, 5.7 (s.d. 4.8) and 4.1 (s.d. 4) points. The score means did not significantly change over time. Approximately one third of patients (n = 7) before ABMT; five patients at follow-up 1 and four patients at follow-up 2 reached levels indicating a clinical case of anxiety. The corresponding number of cases regarding depression was six, and two at each follow-up. The anxiety subscale score before ABMT correlated to the corresponding value at follow-up 1 (r = 0.59, P , 0.05) and follow-up 2 (r = 0.56, P = 0.06). The depression subscale score before ABMT correlated significantly to the


500

Table 1 Distribution of the scores of EORTC QLQ-C30 symptom scales and single items before ABMT, at follow-up 1 and at follow-up 2 in patients with hematological malignancy Before (n = 19)

Follow-up 1 (n = 14)

Follow-up 2 (n = 12)

Median

Range

Median

Range

Median

Range

Symptom scales Fatigue Nausea and vomiting Pain

22 0 0

0–78 0–17 0–67

39 0 0

11–89 0–100 0–50

28 0 0

0–67 0–100 0–83

Single items Dyspnea Sleep disturbance Appetite loss Constipation Diarrhea Financial impact

33 33 0 0 0 33

0–100 0–100 0–100 0–33 0–33 0–100

33 0 0 0 0 33

0–100 0–67 0–100 0–33 0–33 0–100

33 0 0 0 0 0

0–67 0–100 0–33 0–33 0–67 0–100

The possible range was 0–100 points with higher scores representing more perceived symptoms.

corresponding score at follow-up 1 (r = 0.68, p = ,0.01) but not at follow-up 2 (r = 0.45, P = .0.15). When the patients classified as being cases of anxiety at the three assessments were compared to those who were not, a few differences were found in QLQ-C30 functioning scales (Table 2). There were no significant differences between the two groups in the QLQ-C30 symptom scales and single items except for appetite loss, which was more frequently reported by the cases (P , 0.01) before ABMT. Cronbach’s alpha coefficients for the HAD anxiety subscale before ABMT and at follow-up 1 and 2 were 0.87, 0.90 and 0.88, respectively. The corresponding figures for the depression subscale were 0.62, 0.67 and 0.86, respectively. The SOC scale The mean score of the SOC scale was 67.0 (s.d. 11.9, range 49–86). The values of the correlations between the SOC scale and the QLQ-C30 are given in Table 3. Before ABMT the weaker the SOC the significantly worse the rated role and social functioning and global health/QOL, and at follow-up 2, the worse the rated physical and social function. The SOC scale scores were not significantly associated with the scores on the EORTC QLQ-C30 symptom scales

except for fatigue (r = −0.49, P , 0.05) and appetite loss (r = −0.57, P , 0.05) before ABMT. Thus, the weaker the SOC the more reported fatigue and appetite loss before ABMT. The SOC scale scores did not significantly relate to the anxiety or depression subscale in the HAD scale. Cronbach’s alpha coefficient for the SOC scale was 0.79. Discussion This study found no significant differences over time in the patients’ perception of their physical and psychosocial functioning before and during the follow-up of 1 year after ABMT. Most patients rated rather good physical and psychosocial functioning and few symptoms. However, social function reflecting family life and the possibility of making use of social activities was rated quite low on all the occasions in the present study. BMT survivors’ concerns and distress about the effect of their illness on their families have been described in other studies.5,27,28 Furthermore, Zabora et al27 found that because of the great burden and demands of acute illness, treatment and prolonged recovery, patients’ family and social support networks were at risk

Table 2 Distribution of median values in EORTC QLQ-C30 functioning scales comparing cases and non-cases of anxiety as measured with the HAD scale Before ABMT

Functioning scales Physical function Role function Emotional function Cognitive function Social function Global health/QoL a

Mann–Whitney U test.

Case (n = 6)

Non-case (n = 13)

100 25 38 83 59 59

100 100 75 83 67 79

Follow-up 1

NS a NS P < 0.01 NS NS NS

Case (n = 5)

Non-case (n = 9)

80 50 67 83 67 67

100 50 83 83 67 75

Follow-up 2

NS NS P < 0.01 NS NS NS

Case (n = 4)

Non-case (n = 8)

80 100 42 46 50 46

100 100 83 92 84 88

NS NS P < 0.05 P < 0.05 NS P < 0.05


Table 3

Correlations between the SOC scale and the EORTC QLQ-C30 functioning scales rated before ABMT, at follow-up 1 and at follow-up 2 Before n = 19a

Functioning scales Physical function Role function Emotional function Cognitive function Social function Global health/QOL a

Follow-up 1 n = 13

Follow-up 2 n = 11

r

P

r

P

r

P

0.16 0.46 0.31 0.27 0.62 0.67

NSb P < 0.05 NS NS P < 0.01 P < 0.01

0.43 0.20 −0.25 0.03 0.42 0.39

NS NS NS NS NS NS

0.68 0.38 −0.15 0.03 0.64 0.17

P < 0.05 NS NS NS P < 0.05 NS

Number of patients differs between 19 and 18 due to internal failure in response. Spearman rank correlation coefficient.

b

of dysfunction. In addition, Baker et al28 found that social support was associated with current quality of life indicators and that lack of social support was a predictor of negative feelings. The first year following ABMT many patients are on sick leave and this has a great impact on the role function. Persons whose illness causes impact on their job plans have shown less satisfaction with their quality of life.29 In addition, fatigue and dyspnea were more frequently reported symptoms in the present study, which may contribute to the decreased social function. Canceroriented fatigue is described as multifactorial and multidimensional. Biological, psychological, social and personal factors may influence onset, impact, expression, duration and severity of the fatigue experience. 30,31 These results are in accordance with the only previously published prospective study evaluating patients during the first year after ABMT,1 and with the results of studies that have been performed on one occasion after ABMT/BMT with varying periods of time since transplantation.3,28,32 These studies confirm that patients usually do remarkably well from a physical point of view as well as in overall satisfaction. The areas frequently identified as problematic are stamina, sexual functioning and work.3,32,33 Interestingly enough, patients with a weaker SOC scored significantly worse on role and social function and global health/QOL, and more fatigue and appetite loss before ABMT than those with a stronger SOC. According to Antonovsky8 it may be hypothesized that if patients are used to perceiving their life situation as comprehensible, manageable and meaningful they are more likely to perceive their situation as bearable when ill. Although the sample is small and more research is needed to verify the results, the findings all show the expected direction as suggested by Antonovsky. In other studies stronger relationships have been found between SOC and indicators of psychological and social character.10,12,25 Despite the fact that most patients responding perceived overall good function, a small but significant number reported severe distress and dysfunction after transplant. The levels of anxiety and depression before ABMT were similar to post-ABMT values. Although the patient sample is small this may indicate that patients reporting anxiety and depression before ABMT continue to do so after transplantion. It is suggested that health care providers need to

be sensitive to detect patients who might benefit from extensive support in the psychosocial field and treat them accordingly. Individually structured pre-transplant assessment as well as post-transplant assessments of physical and psychosocial function and coping capacity may be clinically important to identify vulnerable patients. The strength of this study lies in that as far as we know it is the first prospective study of patients undergoing ABMT to follow respondents before and for approximately 1 year after. However, one major limitation is the small sample size, which must be kept in mind when interpreting the results. The results may, furthermore, be biased by the fact that several patients got worse and some died during the study. However, those who failed to complete the study did not differ in their perceptions before ABMT from those who did not complete the study. It can also be questioned whether the instruments used in this study are sufficiently representative to reflect the many aspects that may be affected by ABMT. Other areas such as impaired sexual function and fear of relapse have been identified as important concerns in some studies.34,35 Furthermore, Ferrell et al34 interviewed 119 BMT survivors in a qualitative study to investigate how BMT had affected their quality of life and found both negative and positive changes. The reported positive effects on the survivors’ quality of life were: ‘a second chance was given’ meaning an opportunity to return to life, a possibility ‘to improve quality of life’, ‘spirituality had increased’ as well as ‘appreciation of life’.34 In conclusion, in this study patients having malignant blood diseases undergoing ABMT perceive their physical and psychosocial functioning as rather good before as well as up to 1 year after the procedure. Impairments were reported concerning social function, anxiety and depression as well as fatigue, dyspnea and the financial situation. Patients with a weaker SOC scored their physical and psychosocial functioning as worse than those with a stronger SOC. This may indicate that factors other than the disease and its treatment also have an impact on patients’ wellbeing although the results only show a non-significant relationship. Further research is needed to explore healthrelated quality of life in patients undergoing ABMT. It is suggested that each individual should be evaluated on the basis of the areas of life that she or he considers to be most important for her/his quality of life.

501


502

Acknowledgements This study was supported by grants from the King Gustav V Jubilee Fund, the Tobias Foundation, the Karolinska Hospital and the Karolinska Institute, Stockholm, Sweden.

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