Purpose: The aim of this project was to identify the nature and range of needs, as well as levels of quality of life (QOL), of both patients living with myeloma and their partners.
Methods: A cross-sectional survey was used, recruiting patients and their partners from 4 hospitals in the United Kingdom at a mean time post-diagnosis of 5 years. Patients completed a scale exploring their Supportive Care Needs, the Hospital Anxiety and Depression Scale (HADS) and the EORTC QOL scale with its Myeloma module. The partners completed the partners' version of the Supportive Care Needs scale and HADS.
Results: A total of 132 patients and 93 of their partners participated. One-quarter of the patients and one-third of the partners reported unmet supportive care needs. About 27.4% of patients reported signs of anxiety and 25.2% reported signs of depression. Almost half the partners (48.8%) reported signs of anxiety and 13.6% signs of depression. Anxious/depressed patients had more than double unmet needs than non-anxious/depressed patients (P<0.05). QOL was moderate, with key areas of impairment being physical, emotional, social and cognitive functioning, and patients complained of several symptoms, including tiredness (40.7%), pain (35.9%), insomnia (32.3%), peripheral neuropathies (28.3%) and memory problems (22.3%). About 40.8% were worried about their health in the future.
Multiple myeloma accounts for about 14% of all newly diagnosed haematological cancers, and it is estimated that its incidence will rise considerably due to an increasingly aging population in the Western world 1. It is an incurable form of cancer, with an average survival of 4 years from diagnosis 1. Nevertheless, with improvements in treatment and care, a substantial number of patients live beyond 5 years that according to some definitions 2 makes them cancer survivors, even though they may not always return to their previous lifestyle.
Treatment for multiple myeloma is mostly out-patient based. Many patients therefore spend a considerable amount of time managing their symptoms at home and undertaking what can be burdensome and complicated regimes, often with little outside support. Even though this physically disabling and deteriorating condition has a great impact on patients, little is known about their (unmet) needs and quality of life (QOL). An electronic literature search combining ‘myeloma’ and ‘needs’ has yielded no relevant papers. However, a number of QOL papers in myeloma patients after marrow or blood stem cell transplant were identified 3–6, but this group is not representative of multiple myeloma patients overall, as only a minority of these patients undergo blood stem cell transplants. Even in the general cancer population, research on unmet needs is only just emerging, and there are only a limited number of studies for comparison 7.
It has been argued that up to 40% of general cancer patients experience unmet needs that are of a moderate-to-high level 8. Cancer patients frequently complain about the lack of appropriate information 7–9, and this can range from 25% 9 to 84% of patients 10. Most needs are strongly linked with anxiety and depression and depressed patients have more needs than those who are not depressed 8, 9. Many patients may also have unmet ‘existential’ survivorship needs 9. Cancer patients frequently complain about fatigue and pain 10, issues related to sexuality 7, 9, and are concerned about taking effective care of themselves and their families 10. Up to two-thirds may want more practical help, have transportation needs or may need help from a house cleaner 8, 10.
Nothing is known about the needs of myeloma patients and their partners who have to bear the majority of their physical and emotional care at home, and this may even be more demanding for this type of incurable cancer characterised by bony damage, physical deterioration and poor prognosis. Studies have found that carers of cancer patients frequently bear even greater illness-related burden, may experience higher psychological and psychosomatic distress than the patients themselves 11–14 and may need more information and help with practical aspects of everyday life 14. Studies have also highlighted the unique needs of carers (that they themselves have to cope with their partners' illness while simultaneously providing support to them 14); hence, the identification of needs should focus on both patients and informal carers 9.
The framework of this study is based on the premises of supportive care, which is defined as care that helps a patient with cancer and their family to cope with the cancer and its treatment from pre-diagnosis through the process of diagnosis and its treatment to cure, continuing illness or death and into bereavement 15. The supportive care needs of a patient and/or family member can be varied and can include both the physical effects of the cancer and its treatments as well as psychological and spiritual well being, and may relate to a person's QOL at a given moment. This study, therefore, aims to identify the nature and range of needs as well as levels of QOL of both patients living with myeloma and their partners. The objectives of the study included:
(a)to explore the unmet supportive care needs, psychological well being and QOL in patients with myeloma and their partners;
(b)to explore what areas of life could predict greater number of unmet supportive care needs.
This was a cross-sectional survey of needs and QOL in myeloma patients and their partners in a large specialist referral centre in the United Kingdom and three district general hospitals in the north west of England. The two different types of hospitals were selected as they care for a different myeloma population, with a younger and fitter population with often more complex medical needs treated in the myeloma specialist (transplant) centre and less complex cases attending general heamato-oncology units of district hospitals.
A sample size of 130 would be large enough for testing both R2 and the contribution of independent variables for a model containing 10 independent variables, assuming medium-sized relationships between the outcome and independent variables, 5% significance and 80% power. This sample size is based on the number required for non-stepwise multiple regression models to assess the association between independent variables and the outcome variables for unmet needs and QOL, following the formulae given by Tabachnick and Fidell 16, p. 117. For partners, it is assumed that 70% of the patients will have a partner and if the patient agreed to participate, it was expected that there would be a high likelihood of partner participation; hence, 91 partners were the recruitment target.
The inclusion criteria for patients were as follows:
(a)diagnosed with multiple myeloma;
(b)being more than 1 year post-initial diagnosis;
(c)having received chemotherapy with or without immunomodulatory drugs, marrow or blood stem cell transplantation for their myeloma. Patients receiving maintenance treatments were also included and
(d)willing to participate in the study and able to complete the study's questionnaires.
Patients less than 1 year post-diagnosis were excluded from the study because the focus of the study was longer term needs in myeloma survivors. Patients with advanced/progressing disease were also excluded. The patients' partners were also recruited, and they were included in patient–partner dyads if they were in a relationship with the patient, living together and/or were the primary caregiver of the patient.
The study commenced after approval from a multisite Research and Ethics Committee, and further R&D approvals from all participating hospitals. Consecutive patients meeting inclusion criteria were approached for possible participation in the study until the desired number of participants was reached. Patients were recruited by a research associate or the clinicians in the myeloma clinic of the participating hospitals when they were attending for their regular follow-up appointment, who explained the study to patients meeting inclusion criteria and obtained written consent. Subjects were asked to report current unmet needs and QOL over the past week. The study instruments were completed at home and returned to the researchers in pre-paid envelopes. A reminder letter was sent to non-respondents after 3 weeks. Patients were reassured that their responses to the questionnaires would be confidential and clinicians would not be able to link the data with patients. A steering committee consisting of four independent members (including a patient and a patient's partner) not involved with the study met regularly to assess and monitor the progress of the study.
The outcome variables of this study included supportive care needs, anxiety, depression and QOL. These were assessed as follows.
The supportive care needs of patients with myeloma were assessed using the Cancer Survivors' Unmet Needs measure (CaSUN) that fulfils most of the standards for acceptability, internal consistency and validity for a scale 9. The questionnaire was developed to assess the needs of ‘survivors’ who were identified as the patients 1–11 year post-diagnosis and therefore corresponds to our target group. It consists of one open-ended question, 6 questions asking about positive changes and 35 questions on (met, partially met and unmet) needs. This instrument can be used in parallel with another psychometrically valid instrument aimed at detecting the partners' needs (CaSPUN) 17. Cronbach coefficient α for this study was 0.95.
The HADS (Hospital Anxiety and Depression Scale) 18 was used to assess the degree to which myeloma patients experience anxiety and depression, as the literature suggests that these are common problems for cancer patients and predictive of their needs. HADS is a 14-item well-validated and widely used scale that aims to detect anxiety and depression. Scores between 8 and 10 are considered borderline while those over 10 are indicative of clinical anxiety or depression. Cronbach coefficient α for this study was 0.85 with regard to anxiety and 0.79 with regard to depression.
QOL was assessed with the EORTC QLQ-C30 scale 19. The EORTC QLQ-C30 consists of 30 questions assessing functional, emotional, cognitive and social aspects of life, and it includes measures of symptom severity. The scale was used in conjunction with its validated myeloma module (QLQ-MY20), which includes 20 myeloma-specific questions 20, 21. Cronbach coefficient α for this study was 0.89 for the generic scale and 0.92 for the myeloma module. Information about socio-demographic characteristics including age, gender, education, marital status, religion, occupation and ethnicity was obtained from the patients through a short questionnaire. Disease and treatment-related information (time since diagnosis, stem cell transplant vs other treatments; being in remission or relapse, chronic comorbidities and maintenance therapy received) was obtained from the patients' medical records.
The partners of myeloma patients completed the partner scale of the Cancer Survivors' Unmet Needs measure (CaSPUN) 17 and the HADS scale. Socio-demographic characteristics were also obtained as with the patients. Cronbach α for the CASPUN was 0.95, HADS-anxiety scale 0.87 and HADS-depression scale 0.81.
Using SPSS (v.13) descriptive statistics were calculated to summarise the data and identify subgroups of patients with great number of needs. Regression analysis was used to test predictors of unmet needs, which included all variables that were correlated with the outcome variable at P<0.10. Subgroup analyses using t-tests were carried out between unmet patient needs on the one hand and younger or older patients (i.e. <60 and >60); type of treatment received (i.e. chemotherapy vs marrow/blood stem cell transplant), time since treatment (i.e. 1–5 years vs long-term survivors of >5 years) and levels of anxiety or depression. Missing values were minimal in the present data set. Missing values in the QOL scale were replaced with mean scores. Items with missing values in the CaSUN/CaSPUN scale were not included in the descriptive analysis. As the missing values were less than 5%, it is unlikely they would impact on any results.
The study recruited 132 patients and 93 of their partners. The response rate for patients was 67.4% of 196 patients approached and for the partners was 50.3% of 185 partners approached. While we could not ethically explore why people decided not to participate in the study, the most common reason that partners alluded to for not participating was that they did not want to be reminded of their partners' disease. The mean age of the patients was 62 years (SD=8.8, range=35–83) and the mean age of the partners was 58.9 years (SD=12.6; range=25–80). Fifty patients (37.9%) were less than 60 years old. The patient sample was comprised of individuals who were a mean of 67.7 months after their diagnosis with myeloma (SD=52.2, range 12–269 months), with 65 patients (49.2%) being between 12 months and 5 years post-diagnosis and 67 patients (50.8%) being more than 5 years post-diagnosis. This sample of patients was slightly younger than unselected myeloma patients (median age at diagnosis=66) and survived well above the median survival time of myeloma patients, reflecting selection of patients primarily from a specialist transplant centre. The vast majority of patients had been treated in a specialist centre (n=109, 82.6%), while 23 (17.4%) were treated in a district general hospital. Two-thirds of the sample (n=90, 68.1%) had received a blood stem cell transplant (the vast majority, 82%, having received high-dose melphalan and autologous blood stem cells), 64 (48.5%) were in remission and 62 (45.9%) reported at least one (chronic) comorbidity. The vast majority (n=85, 64.4%) were not receiving any active treatment at the time of the study, with 14 patients receiving maintenance treatment (not only primarily thalidomide, but also interferon and steroids). Regarding treatment the majority (n=83, 62.9%) had received thalidomide, 24 (18.2%) interferon, 15 (11.4%) Velcade (bortezomib) and 4 (3%) Revlimid (lenalidomide). Other socio-demographic characteristics of the sample are shown in Table 1.
Table 1. Sociodemographic characteristics of the patients and their partners
aData from 14 patients missing.
bData from 5 patients and 2 partners missing.
cData from 5 patients missing. Valid % is presented.
Thirty-five patients (26.5%) reported at least one unmet need, although most were described as weak or moderate needs. A similar number of partners (n=27; 29%) reported at least one unmet need. The most common needs for both patients and their partners were related to accessibility of hospital car parking (40 and 51.6%, respectively, among those who expressed a need or 10.6 and 15% of total sample, respectively), obtaining life and/or travel insurance (39.3 and 42.9%, respectively, among those who expressed a need or 10.4 and 12.5% of total sample, respectively) and managing their concerns about myeloma coming back (29.7 and 39.6%, respectively, among those who expressed a need or 7.9 and 11.5% of total sample, respectively) (Table 2). While the most frequently reported unmet supportive care needs were the same in both patients and partners, the partners had their own additional needs that were not reported by patients.
Table 2. Unmet supportive care needs in myeloma patients and their partners
aThese percentages represent needs in up to 40% of patients and up to 52% of partners who communicated at least one need.
*Numbers in brackets indicate the rank of patient/partner need
I need more accessible hospital parking
Due to myeloma, I need help getting life and/or travel insurance
I need help to manage my concerns about myeloma coming back
I need an ongoing case manager to whom I can go to find about services whenever they are needed
I need help to reduce stress in my life
I need help to try to make decisions about my life in the context of uncertainty
I need to know that all my doctors talk to each other to coordinate my care
My family and/or partners needs information relevant to them
I need to talk to others who have experienced myeloma
I need help to deal with my own and/or others expectations of me as a myeloma survivor
I need help to adjust to changes in my quality of life as a result of my myeloma
I need help to find out about financial support and/or state benefits to which I am entitled
I need help to know how to support my partner and/or family
I need help to cope with others not acknowledging the impact that myeloma had on my life
I need help to adjust to changes to the way I (my partner) feel(s) about my(his/her) body
Additional partner' needs were mostly around the practical and informational aspects of the patients' care and included the need for help to manage ongoing side effects and/or complications experienced by patients as a result of their treatment (34.4% among those who expressed a need or 10% of total sample), provision of up-to-date information (30.5% among those who expressed a need or 9% of total sample), local health-care services that are available when the patient requires them (27.6% among those who expressed a need or 8% of total sample), help in dealing with changes that myeloma has caused to the patient (26.2% among those who expressed a need or 7.6% of total sample), emotional support to themselves (26.2% among those who expressed a need or 7.6% of total sample) and information to be provided in a way that they can understand (24.6% among those who expressed a need or 7.1% of total sample). There were no significant differences in the level of reported unmet supportive care needs and whether patients had a blood stem cell transplant or not; time since diagnosis (<5 year or >5 years) and age (using mean age as cut-off point) (all P>0.05).
Positive changes as a result of myeloma were also reported by both patients and partners. Patients overall reported that they appreciated their relationships with others more (48.5%) and that they realised how precious life is (42.7%). Their partners felt they had grown as a person (44.8%) and that they also appreciated their relationships more (43.2%).
Anxiety and depression
The mean anxiety score for patients was 5.64 (SD=3.83) and for depression was 5.18 (SD=3.37). The mean anxiety score for partners was 7.72 (SD=4.31) and for depression was 4.57 (SD=3.63) (Figure 1). Anxiety was significantly higher in the partners than the patients (P<0.05). There was a moderate but statistically significant relationship between patient and partner anxiety (r=0.36, P<0.001) and patient and partner depression (r=0.31, P<0.001). Patients with an anxiety score of ⩾8 had significantly greater number of unmet needs reported (45.7% vs 19.4%, P=0.002). Similarly, those with signs of depression had double the amount of unmet needs reported than those with no signs of depression (43.8% vs 21.1%, P=0.012). Patients receiving maintenance therapy also showed lower levels of depression from those who were not receiving a treatment (P=0.036).
Quality of life
QOL scores in this patient population are shown in Table 3. Subscale scores indicated that areas of low performance included the global QOL, physical, role, cognitive and social functioning as well as pain, dyspnoea, appetite loss, insomnia, constipation and financial difficulties. While several of these areas were similar to other studies using myeloma patients, emotional functioning, social functioning, dyspnoea, insomnia and financial difficulties seemed higher in this population compared to Danish myeloma patients 22 (Table 3). In addition, the QOL of individuals who comprised this sample was particularly lower than that of other haematological patients who had undergone a stem cell transplant and healthy subjects (Table 3).
Table 3. EORTC QLQ-C30 and MY20 scores in the sample
*Higher scores in the functional subscales (first 6 items of the table) indicate higher levels of quality of life, while higher scores in the remaining toxicity items indicate lower quality of life.
aFrom Ref. .
bFrom Ref. .
Global quality of life
Myeloma disease items
Side effects of treatment
The individual items of the EORTC QOL scale that were reported as most bothersome by patients with myeloma (>25% of patients reporting ‘very much’ or ‘quite a bit’ of bother) included the inability to do strenuous activities (66.1%) or take long walks (64.7%); limited leisure (47.2%), daily (40.5%), family (35.2%) and social activities (40.3%), and pain interfering with daily activities (28.7%). One-third of the patients (35.9%) experienced significant pain, 34.5% reported that pain increased with activity, 37% reported back pain, 40.7% reported tiredness, 32.3% insomnia, 22.3% memory problems and 21.4% dyspnoea. Nearly one-third (28.3%) of the sample reported tingling hands and/or feet, 30% felt less attractive, 35.4% reported thinking about their illness and 40.8% were worried about health in the future. Patients receiving maintenance therapy had a higher global QOL score (P=0.036), lower physical function (P=0.027), lower cognitive function (P<0.001) and higher score in the disease-related (P<0.001) and side effect-related (P=0.015) items of the EORTC scale compared to those not currently receiving treatment.
Regression analysis and correlations between study variables
Predictions of variables that are responsible for higher level of unmet needs would be useful, as then potentially high-risk patients can be identified and targeted for interventions. For this reason, a stepwise regression analysis of all items correlating with unmet patient needs (total score of CaSUN) was carried out, with the latter being the dependent variable, while unmet partner needs (CaSPUN score), anxiety, depression and 14 other variables from the EORTC QOL scale were the independent variables. Results showed that the presence of ‘side effects of treatment’ (EORTC MY20 module subscale) was the single most important variable in predicting unmet supportive care patients' needs, explaining 25% of the total variance in the ‘unmet patient needs’ item (R2=0.25, P<0.001).
Unmet needs in partners were correlated with patient unmet needs (r=0.25, P<0.05), partner anxiety (r=0.24, P<0.05) and the patients' score on the emotional functioning EORTC subscale (r=0.24, P<0.05). Younger patient age was correlated with higher anxiety (r=−0.17, P=0.049) and higher scores in future perspectives (r=−0.20, P=0.025). The patients' anxiety score was correlated with all EORTC QOL subscales (r=0.24–0.72, P<0.05), insomnia (r=−0.38, P=0.001), lack of appetite (r=−0.36, P<0.001) and financial difficulties (r=0.31, P<0.001).
The findings of this study suggest that one-quarter of the patients had unmet supportive care needs, anxiety and depression are prevalent, and QOL is moderate, with key issues being social and cognitive functioning, pain interfering with daily activities, fatigue and coping with treatment side effects, at a mean time of over 5 years post-diagnosis. The partners of patients with myeloma had not only similar but also unique supportive care needs and had reported psychological distress at a higher level than that of patients. The level of patient' unmet needs is broadly similar to other patients with cancer, particularly to those with advanced disease 7, 23, although lower than that reported by breast cancer patients 24. This is an encouraging finding, considering the incurable nature of the condition and ever present physical problems associated with myeloma. It is acknowledged, however, that comparisons with other studies exploring supportive care needs in other cancer diagnostic groups is problematic because (a) of how the percentage of need is calculated (we have chosen in this study to present the more conservative calculation of those reporting a need out of the total sample, whereas other studies present unmet needs out of those reporting a need, significantly increasing the percentage of need) and (b) the huge diversity of methods, timings of assessment and sample characteristics that precludes from any generalisations or patterns to be observed 25. After accessible hospital parking, which is commonly reported in the literature, patients living with myeloma reported a high unmet need with obtaining life/travel insurance, with over double the number of patients with myeloma endorsing this item compared to studies with other cancer populations 24. Other commonly expressed unmet needs were around comprehensive health care and the existential aspects of survivorship including spirituality, ‘moving on’ with life, making decisions for the future and living with the possibility of relapse. Many patients in our sample questioned the term ‘survivor’ on the needs scale, as they had not ‘beaten’ the disease as such, as patients in remission typically do not experience complete remission (especially those >5 years post-diagnosis) and often have active disease- and treatment-related problems.
The partners of patients with myeloma had a slightly higher number of reported unmet needs than the patients, a consistent finding in the literature 23, 26. In addition to having several shared needs with the patients, they also had their own unique needs, including the need for information (which did not feature highly in the patient group), and the need to manage ongoing side effects from the myeloma and its treatments. It is interesting to note that the vast majority of the needs expressed by partners were geared around the patient rather than the partner's own needs. Partners of patients (and informal caregivers in general) assume the caregiving role with minimal preparation and they often have limited opportunities to discuss their needs with health professionals 27. Professional support of the informal caregivers should be the focus of care in a more consistent manner. In addition, a quarter of the partners (22%) had their own chronic illnesses, and attending to them did not feature at all in this data, suggesting that partners may be neglecting their own needs to ensure that their loved ones receive the attention they need. The timing of the assessment is important, as many patients commented that had they completed this scale during treatment and soon after, their responses would have been very different and with more needs, suggesting that supportive care needs may be higher in this population during active treatment times.
A significant number of patients and partners reported anxiety (27.4 and 48.8%, respectively), while signs of depression were reported by 25.2 and 13.6%, respectively. These numbers suggest that the illness experience has taken its toll with both patients and partners, and these numbers are higher than those reported in the wider cancer literature 28, 29, highlighting the high incidence of anxiety and/or depression in this population of myeloma patients and their partners. Indeed, a large American study in the myeloma transplant setting has shown that anxiety and depression in their sample was even higher at 39.4 and 40.4% 30. A particularly high risk group may be the younger patients (who also reported in this study more future concerns than their older counterparts) as younger age is known to be a predictor of a mental-health disorder in long-term survivors from cancer 29. Higher anxiety and depression are also linked with a higher level of unmet supportive care needs, another consistent finding in the literature 24, 26. Supportive care services for those living with myeloma and their partners should include screening for these common affective disorders on a regular basis. The HADS has been suggested as an effective initial screening tool in cancer populations, and a combined score of 14/15 provides a sensitivity of 0.87 and specificity of 0.85, making it appropriate for screening purposes 31. Referral to psycho-oncology or mental-health services should lead to optimal treatment and support in this subgroup of patients and informal caregivers who develop mental-health problems, and could simultaneously decrease their unmet health-care needs.
QOL levels in this study were found to be moderate and lower than other patients with haematological malignancies treated aggressively with a marrow transplant 32, 33. Levels of QOL were also lower than those reported in studies of other haematological patients who had undergone a blood stem cell transplant at least 5 years after treatment 34 as well as European healthy norms 3, 34. In a recently published study involving a national Danish population of patients with haematological cancers (n=470), it was shown that patients with myeloma had worse QOL scores compared to all other haematological cancer groups 22, although the small sample of 54 patients with myeloma make this subgroup analysis less generalisable. The areas of functioning affected were physical health and side effects, social and cognitive functioning, pain, sleep disturbances and fatigue. These findings suggest that living with myeloma has a major impact in a great range of daily activities, particularly in the significant number (one-third) of patients who experience pain. The QOL scores in the current study are similar to the national Danish sample of myeloma patients 22 in almost all EORTC QLQ-C30 subscales. Nevertheless, it is acknowledged that such comparisons may not be entirely appropriate, as cultural influences may shape areas of life. This further supports the idea that patients with myeloma have the highest level of symptoms and problems from any other haematological cancer population, perhaps as a result of the bone pain, pathological fractures and recurrent infections that characterise myeloma 22. Furthermore, it was interesting to observe that depression levels, global QOL and disease-related aspects of QOL had an improved score in patients who were receiving maintenance therapy, and this may be related to the resulting regular contact with the hospital services and clinicians, despite that their physical functioning was affected. It may also be that more regular attendance at the hospital for those patients may have resulted in better access to support services. Hence, the security and reassurance felt through this contact may be important determinants of QOL. Nevertheless, as the number of patients receiving maintenance therapy was very small (n=14), this finding can only be perceived as hypothesis-generating needing further investigation.
Pain is commonly reported by patients with myeloma, and a similar number of myeloma patients experiencing pain has been reported in an American survey of 206 patients 35 and in a sample of post-transplant patients 30. Steroids have the potential to affect sleep quality and quantity, and such use may be linked with insomnia in our sample, although this was not formally tested in the study. Side effects of treatments have been identified in this study as the single most important predictor of unmet needs, explaining one-quarter of the variance, highlighting the importance of more proactively managing common side effects such as those deriving from the long-term use of steroids, bone disease, peripheral neuropathies and fatigue. Side effects can be long lasting (especially neuropathy and memory impairment) and while many patients may not receive an active antineoplastic therapy, they are likely to require bone agents and analgesia/strong opioids, suggesting that long-term side effects and supportive treatments may be responsible for side effects. The fact that 35.9% of the patients reported pain ‘currently’ suggests that pain management is suboptimal, and this is a key symptom interfering with daily and social activities and may lead to psychological distress 10, 36.
Findings should be viewed in light of the study's limitations, particularly the lower than expected response rate from the partners. While we strived to recruit the entire myeloma patient population in the participating hospitals, selection biases common in non-random surveys may have taken place. The non-respondent partners may constitute a group of caregivers with more needs and problems than those reported by the respondents. Indeed, some patients and partners did not want to take part as they felt the questions were too upsetting – bringing things to the forefront of their minds that they wanted not to be thinking about, suggesting that these patients may have more difficulties coping with their disease. The response rate in the patients, however, was satisfactory and typical of surveys. The CaSUN is tested in patients free of disease, and while in our study the majority were in remission, some patients were receiving maintenance therapy, which can raise questions around the scale's external validity with our sample. Furthermore, the majority of the patients derived from a tertiary cancer centre with a large transplant programme, and results may reflect a younger and more fit myeloma population, despite the fact that no statistically significant differences were observed in younger and older patients in the sample. The results also reflect more the views of those in remission and who have survived for longer. Unmet needs and QOL based on type of treatments received (i.e. stem cell transplant, biological modifiers, steroids or interferon) would be interesting to explore in the future, but such subgroup analyses were difficult to be carried out in this study as the numbers per treatment were small. Another limitation is that almost all (but 6) patients were of white origin, and hence findings cannot be applied in other ethnic groups, particularly Afro-Caribbean and African patients where there is an incidence of myeloma twice as high as in white people 37.
Future research should focus on assessing the effectiveness of therapeutic strategies that assist patients and their partners to live more fully, improve their emotional health and deal more effectively with the after-effects of the treatments received for the myeloma. Little is known about the supportive care needs of patients receiving active treatment and those who have advanced and progressive disease and future research should explore these needs with appropriately validated and sensitive scales. Furthermore, an interesting research question may be to assess the differences in supportive care needs between patients who have partners and those who do not. Finally, most of the partners were spouses in this study, and it would be useful in the future to explore the needs of informal caregivers other than the spouses.
Supportive care services for patients living with myeloma and their informal caregivers/partners should provide them with the opportunity to discuss their unmet health-care needs and how they can meet them as at least one-quarter of patients and one-third of caregivers experience unmet needs. Based on the key findings on unmet needs (Table 2), social services should assist patients and their caregivers to explore and obtain financial support and state benefits to which they are entitled. Hospital management should make parking more accessible as to minimise any added stress in relation to hospital visits. Advocacy in relation to obtaining life/travel insurance more easily, and increasing others' understanding of what it means living with myeloma would help patients meet some of their highest (and most difficult to meet) needs. Psychological support should be provided on an ongoing basis, exploring the impact myeloma has on patients' and partners' lives and addressing their expectations in living with myeloma, particularly as partners reported significant levels of anxiety. Optimal and proactive symptom management, particularly in relation to pain and fatigue that were shown to be the most frequently reported symptoms in our study, could allow patients to spend more time doing leisure activities and socialising, thus improving their QOL. The long-term effects of myeloma and its treatments and their impact on emotional well-being should be the focus of long-term supportive care services, directed equally to both patients and their informal caregivers/partners.
We would like to thank all clinicians who have helped us recruit patients in the study, including Dr Isabel Syndikus, Dr Patrick Carrington, Dr David Alderson, Dr Hussein Baden as well as our steering group members, Mr David Green, Mr Tony Webber and Ms Jo Tomlins, and Lisa Brunton who assisted with data management.
The study was funded by a health services research grant (Miriam Hyman research grant) from Myeloma, UK.