Influence on the health of the partner affected by tumor disease in the wife or husband based on a population-based register study of cancer in Sweden, K Sjövall, B Attner, T Lithman, D Noreen

Tags: cancer, American Society of Clinical Oncology, health care costs, health care, lung cancer, colon cancer, cancer diagnosis, cancer patients, cancer patient, psychiatric diagnoses, risk ratio, Sweden, general population, prostate cancer, RR, outpatient care, type of cancer, Southern Sweden, Colon Women Rectal Women Lung Women Prostate Women Colon Men Rectal Men Patient Diagnosis, breast cancer, University Hospital of Lund, the partner, Southern Regional Care Committee, prostate cancer patients, cancer care, Lund Department of Health Sciences, days in hospital, J Clin Oncol, types of cancer, Thor Lithman, Barbro Gunnars, Rhee YS, mental health, Badger T, spouses, Cochrane BB, metastatic breast cancer, family caregivers, rectal cancer, depressed mood, Lund University, women with breast cancer, Psychiatric disorders, increased health care, cancer groups, recurrent breast cancer
Content: VOLUME 27 NUMBER 28 OCTOBER 1 2009 JOURNAL OF CLINICAL ONCOLOGY
ORIGINAL REPORT
From the Departments of Oncology and Cancer Epidemiology, Institute of Clinical Sciences; and Lund Department of Health Sciences, Lund University, Lund, Sweden. Submitted January 9, 2009; accepted April 29, 2009; published online ahead of print at www.jco.org on August 31, 2009. Supported by grants from the Department of Oncology, University Hospital of Lund, and the Southern Regional Care Committee in South Sweden. K.S. and B.A. contributed equally to this study as first authors. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article. Corresponding author: Katarina SjoЁ vall, RN, Department of Oncology, University Hospital, S-221 85 Lund, Sweden; e-mail: [email protected] The Appendix is included in the full-text version of this article, available online at www.jco.org. It is not included in the PDF version (via Adobe® Reader®). © 2009 by American society of Clinical Oncology 0732-183X/09/2728-4781/$20.00 DOI: 10.1200/JCO.2008.21.6788
Influence on the Health of the Partner Affected by Tumor Disease in the Wife or Husband Based on a PopulationBased Register Study of Cancer in Sweden Katarina SjoЁvall, Bo Attner, Thor Lithman, Dennis Noreen, Barbro Gunnars, Bibbi Thomґe, and Hеkan Olsson ABSTRACT Purpose To examine health care use and health care costs among partners of persons with cancer. Patients and Methods Partners of patients with colon, rectal, lung, breast, and prostate cancer (N 11,076) were identified via linked data from the Tumor Registry of Southern Sweden and Census Registry of Sweden. Health care use, total costs of health care, and diagnosis of the partner were studied before and after diagnosis of the cancer patient. Results Health care use for partners increased in terms of in-patient care after the cancer diagnosis. A significant increase was seen the second year for partners of patients with colon cancer (risk ratio [RR], 1.55; 95% CI, 1.28 to 1.87) and lung cancer (RR, 1.50; 95% CI, 1.26 to 1.79). Psychiatric diagnoses increased after the cancer diagnosis in the total sample, with a significant increase for partners of colon (RR, 2.66; 95% CI, 1.71 to 4.22), lung (RR, 3.16; 95% CI, 2.23 to 4.57), and prostate cancer patients (RR, 1.68; 95% CI, 1.32 to 2.15). Costs of care increased more than the Consumer Price Index the two years after the cancer diagnosis. Costs of care increased most for male partners and especially for younger male partners (age 25 to 64 years) of patients with colon, rectal, and lung cancers. Conclusion The results showed increased health care costs and an increase in psychiatric diagnoses after the cancer diagnosis among partners of cancer patients. Further research is needed to learn more about the situation of the partner and to identify persons at risk of psychiatric morbidity. Knowledge is also needed on how to support the partner in the most efficient way. J Clin Oncol 27:4781-4786. © 2009 by American Society of Clinical Oncology
INTRODUCTION A cancer disease not only has direct consequences for the patient with cancer but can also affect the life of the partner and the family. The partner is often the closest relative to the cancer patient and has an important role in providing support. In this study, we focused on how living with a patient with cancer affects the health of the partner in terms of health care use and health care costs. The emotional support provided by a partner has proven to have a positive impact on the ill person's ability to cope with the disease.1,2 However, the emotional support from the partner has also been reported as having a negative impact on the ill person due to worries about the partner.1,3 According to Northouse4 and Segrin et al5 women with breast cancer and their partners had mutual impact on their ability to adjust to the situation.
Earlier studies have found that partners of patients with cancer experienced a higher level of stress,6 and lower level of general and mental health7 compared to the population in general. The same level of distress for the partner as for the ill person has been shown,8 and in some studies even higher levels for the partner.9-12 Apart from the increased levels of emotional distress, high levels of psychiatric morbidity and increased risk of developing clinical depression have been found in partners.4,12-16 Thus, a cancer diagnosis seems to affect the life situation of the ill person as well as the partner in an extensive way. The findings from the literature review may imply that partners of persons with a cancer disease have an increased use of health care. An increased use of health care may claim a deeper knowledge about what needs partners of persons with cancer have to develop optimal care and
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SjoЁ vall et al
Table 1. Description Sample of Partners of Cancer Patients Diagnosed From 2000 to 2005
Diagnosis of Patient (type No. of of cancer) Patients
No. of Partners No. %
Age of Partner 65 Years (% of total sample)
Sex of Partner (%) Male Female
Colon
2,976 1,440 48
68
38
62
Rectal
1,455
729 50
58
36
64
Lung
2,920 1,488 51
58
35
65
Breast
5,318 2,559 48
38
99
1
Prostate
7,319 4,860 66
54
0.1 99.9
Total
19,988 11,076 55
53
35
65
support. No previous population-based studies have been found with the focus on health care use in partners of persons with cancer. In this study, we examined patterns of health care use and health care costs among partners of patients with cancer. PATIENTS AND METHODS The study was planned as a retrospective cohort study. This study is a part of a survey with the aim of mapping and analyzing cancer in the Southern Health Care Region in Sweden, including colon, rectal, lung, breast, or prostate cancer.17 Study Subjects The study cohort consisted of partners of persons diagnosed with colon, rectal, lung, breast, or prostate cancer in the years of 2000 to 2005 in the region of Skane, Sweden. Partner was defined as the adult spouse/partner living at the same address as the patient at the time of the cancer diagnosis according to the Census Registry of Sweden. Procedure Data were collected from population-based Tumor Registry of Southern Sweden, Census Registry of Sweden and Health Care registries of Southern Sweden. All persons diagnosed with colon, rectal, lung, breast, and prostate cancer in the period of 2000 to 2005 were identified via the Tumor Registry of Southern Sweden. The date of diagnosis was registered with date of birth/social security number. Partners were identified with help of the date of birth/social security number in the Census Registry of Sweden. The coded material was linked to a patient administrative system for the county council of region Skеne (Patient Administrative System in Skеne [PASiS]). In this system, all consumption of publicly organized in- and outpatient care was registered. The date of diagnosis for the patient was chosen to be the date of diagnosis for the
partner and was chosen to be the point of time for comparison before and after. The material was divided in to the studied types of cancer and the years of diagnosis of the patient with cancer. For outpatient care, data of diagnosis were available from 2004 and forward. No data of diagnosis from private care was available. Measures for Health Care Use, Diagnosis, and Health Care Costs Data of health care use included number of outpatient contacts, inpatient episodes, and number of days in hospital and was collected from the patient administrative system. The diagnosis coded at each outpatient contact or inpatient episode was also collected from the patient administrative system. Total costs of health care use by each individual were based on diagnosisrelated groups, number of outpatient contacts, inpatient episodes, and number of days in hospital. Statistical Analysis Health care use, diagnosis, and total costs of health care were studied for continuous periods of 1 year prediagnosis and one year postdiagnosis, and for 2 years pre- and postdiagnosis. Health care use (in- and outpatient care and days in hospital) was compared for 1 and 2 years after with 1 year before the cancer diagnosis and risk ratio (RR) was computed with 95% CI. In order to analyze and compare the prediagnosis and postdiagnosis periods, RR was computed. By that, the group of partners was compared with themselves before and after the cancer diagnosis. RR was computed with 95% CI for a ratio of two independent proportions, large sample. The comparison 1 year postdiagnosis was based on the population diagnosed 2001 to 2005, and the comparison 2 years postdiagnosis was based on the population diagnosed 2001 to 2004. Diagnosis of the partner was compared before and after diagnosis of the patient and analyzed for the whole period. In order to analyze and compare the period prediagnosis with postdiagnosis, RR was computed. RR was computed with 95% CI for a ratio of two independent proportions, large sample. Total costs of health care per partner were compared with total costs for the general population standardized for age, sex, and marital status during the same period of time. Mean health care costs per month and partner were calculated for the period of 24 months prediagnosis until 24 months postdiagnosis, and was compared with consumers prize index for the same period of time. Costs are presented in Swedish crowns (SEK), (1 US dollar is equal to approximately 8 SEK). Ethical Considerations This study is a part of a larger survey of cancer diseases in the Southern Health Care Region in Sweden.17 Handling of data and personal information
Table 2. Health Care Use by Partners of Cancer Patients
Hospital Stays
Diagnosis of Patient (type of cancer) Colon Rectal Lung Breast Prostate Total
Outpatient (1 year post/1 year pre)
RR
95% CI
1.11 1.07 to 1.15 0.95 0.90 to 1.00 1.06 1.02 to 1.10 1.05 1.01 to 1.08 0.98 0.96 to 1.00 1.02 1.01 to 1.03
Visits (2 year post/ 1 year pre)
RR
95% CI
1.10 1.06 to 1.15 0.97 0.91 to 1.03 1.04 1.00 to 1.08 1.04 1.01 to 1.08 1.01 0.98 to 1.03 1.03 1.01 to 1.04
1 Year Post/ 1 Year Pre
RR
95% CI
1.43 1.21 to 1.68 1.0 0.77 to 1.30 1.16 0.98 to 1.37 1.10 0.96 to 1.27 1.16 1.05 to 1.29 1.18 1.10 to 1.26
2 Year Post/ 1 Year Pre
RR
95% CI
1.55 1.28 to 1.87 1.0 0.76 to 1.32 1.50 1.26 to 1.79 1.08 0.92 to 1.27 1.30 1.16 to 1.46 1.29 1.23 to 1.39
NOTE. Quotient calculated as the mean of 1 year prediagnosis (population diagnosed 2001 to 2004). Abbreviation: RR, risk ratio.
Days in Hospital
1 Year Post/ 1 Year Pre
2 Year Post/ 1 Year Pre
RR
95% CI
RR
95% CI
2.06 1.92 to 2.20 1.75 1.61 to 1.91 0.94 0.84 to 1.05 1.05 0.94 to 1.17 1.24 1.16 to 1.32 1.68 1.57 to 1.80 1.11 1.04 to 1.18 1.03 0.96 to 1.11 1.32 1.27 to 1.39 1.76 1.67 to 1.86 1.34 1.30 to 1.38 1.52 1.47 to 1.57
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Health of the Partner Affected by Tumor Disease
Table 3. RRs of Different Diagnoses for Partners of Patients With Cancer (diagnosed 2000 to 2005) the Year After the Cancer Diagnosis
Disease
ICD 10 Diagnosis of the Patient (type of cancer)
All Diagnoses No. of RR 95% CI Cases RR
Psychiatric
95% CI
No. of Cases RR
GI 95% CI
Respiratory
No. of Cases RR
95% CI
No. of Cases RR
Circulatory
Muscle/Skeletal
95% CI
No. of Cases RR
95% CI
No. of Cases RR
Tumor
95% CI
No. of Cases
ICD code Colon Rectal Lung Breast Prostate Total
F00-F99
K00-K93
J00-J99
I00-I99
M00-M99
C00-D48
1.30 1.21 to 1.39 1,522 2.66 1.71 to 4.22 29 1.42 1.03 to 1.96 69 1.22 0.88 to 1.72 67 1.22 1.00 to 1.48 194 1.25 1.00 to 1.55 154 1.27 0.95 to 1.70 88
1.26 1.14 to 1.40 658 1.74 0.96 to 3.23 19 1.10 0.70 to 1.75 39 1.67 1.01 to 2.79 27 1.27 0.93 to 1.74
77 1.67 1.20 to 2.36
58 1.10 0.74 to 1.64 51
1.32 1.24 to 1.41 1,563 3.16 2.23 to 4.57 43 1.01 0.72 to 1.44 69 1.23 0.93 to 1.52 97 1.48 1.21 to 1.81 166 1.29 1.06 to 1.58 175 1.21 0.91 to 1.61 91
1.27 1.20 to 1.35 1,981 1.40 0.92 to 2.16 40 1.21 0.94 to 1.56 118 1.39 1.07 to 1.80 106 1.26 1.06 to 1.49 242 1.21 1.01 to 1.45 219 1.29 1.02 to 1.63 135
1.18 1.14 to 1.23 4,993 1.68 1.32 to 2.15 109 1.33 1.10 to 1.60 202 1.14 0.97 to 1.35 278 1.16 1.03 to 1.31 498 1.18 1.06 to 1.31 625 1.03 0.88 to 1.22 288
1.24 1.21 to 1.24 10,717 2.02 1.73 to 2.37 240 1.25 1.11 to 1.41 497 1.24 1.11 to 1.38 575 1.24 1.15 to 1.34 1,177 1.23 1.14 to 1.33 1,231 1.15 1.03 to 1.28 653
Abbreviations: RR, risk ratio; ICD, International Classification of Diseases of the WHO.
was done according to the Swedish law (Personuppgiftslagen, PUL 1998: 2004). Gathering, handling, and analyzing material was done with coded and anonymous data. It was not possible to identify individuals in the gathering of material. The study was approved by the Committee for Research and Ethics by Lund University (journal numbers 80/2007 and 271/2006).
after the cancer diagnosis. The second year a significant increase was seen for partners of patients with colon, lung, and prostate cancer. For outpatient care, essentially no difference was seen either the first or second year after the cancer diagnosis (Table 2).
RESULTS Nineteen thousand nine hundred eighty-eight persons were diagnosed with colon, rectal, lung, breast, and prostate cancer, and 55% of them were living with a partner. This gave a study sample of 11,076 partners. Of the total sample, 53% was 65 years or older. A majority of the sample, 65%, were female. The sample is further described in Table 1. Health Care Use Inpatient care increased among partners both the first and sec- ond year after the diagnosis of the cancer patient. Both number of hospital stays and number of days in hospital increased. The increase was significant for partners of patients with colon cancer the first year
Diagnosis Diagnosis in total among partners increased the year after the cancer diagnosis. The largest increase was seen for psychiatric diagnoses. The increase was significant for the total sample (RR, 2.02; 95% CI, 1.73 to 2.37). Partners of patients with colon, lung, and prostate cancer had significant increases (colon: RR, 2.66; 95% CI, 1.71 to 4.22; lung: RR, 3.16; 95% CI, 2.23 to 4.57; prostate: RR, 1.68; 95% CI, 1.32 to 2.15; Table 3). Partners in these groups also had an increase in psychiatric diagnosis the second year after the cancer diagnosis (Appendix Fig A1, online only). Partners of patients with rectal cancer had a significant increase in muscle-skeletal diseases (RR, 1.67; 95% CI, 1.20 to 2.36). Partners of patients with lung cancer had a significant increase in circulatory diseases (RR, 1.48; 95% CI, 1.21 to 1.81; Table 3).
Costs (SEK)
2,000 1,800
Health care costs per partner Index
1,600
1,400
1,200
1,000 800
600
400
200
0 -24 -22 -20 -18 -16 -14 -12 -10 -8 -6 -4 -2 0 2 4 6 8 10 12 14 16 18 20 22 24 Time Pre- and Postdiagnosis (months)
Fig 1. Health care costs (mean; Swedish kronor [SEK]) per month during a period of 4 years (24 months prediagnosis until 24 months postdiagnosis), partners of patients in all cancer groups.
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Change in Costs
1.6
One year prediagnosis
One year postdiagnosis
1.4
1.2
1
0.8
0.6
0.4
0.2
0 Colon Women
Rectal Women
Lung Women
Prostate Women
Colon Men
Rectal Men
Patient Diagnosis and Partner Sex
Lung Men
Breast Men
Fig 2. Comparison of health care costs for partners of cancer patients (diagnosed in 2004) with those of the general population (married only), standardized for age and sex. Quotient partner (observed costs) general population (expected costs 2005). Health care costs for partners are equal to costs for the general population when the quotient equals 1.
Health Care Costs Health care costs increased the first and the second year after the cancer diagnosis in all five diagnosis groups (Appendix Fig A2, online only). When comparing with consumers prize index, the increase was higher from the time of the diagnosis and for the two following years (Fig 1). In comparison to the general population standardized for age, sex and marital status, male partners had a higher increase than female partners. Health care costs for partners were in general lower than health care costs for the standardized population (Fig 2). Younger male partners (age, 25 to 64 years) had a larger increase compared to the general population. This was especially obvious for partners of patients with colon, rectal, and lung cancer (Fig 3). DISCUSSION The framework for this study was that a substantial part of previous research on partners of cancer patients have shown that partners are
affected by the cancer diagnosis, in terms of psychosocial distress and psychiatric morbidity. The literature review indicates several psychosocial distresses which might explain some of the increased health care use in our study.5,6,12,21-24 The overall pattern of the findings of this study was that health care use, and consequently health care costs, increase for the partners of cancer patients in the period after the cancer diagnosis. The largest increase of diagnoses among partners was seen for psychiatric diseases, especially for partners of patients with colon and lung cancer with two to three times more psychiatric diagnoses. Differences between the studied groups of cancer diagnosis were seen. This might have several explanations, including differences in disease state, survival rates, age, and sex. The symptoms and severity of the cancer might differ substantially, where several breast cancer patients were diagnosed in the screening situation whereas patients with colon, rectal, and lung cancer might have more advanced disease with advanced symptoms at the time of diagnosis. Previous research has
Change in Costs
3
One year prediagnosis
One year postdiagnosis
Two years postdiagnosis
2.5
2
1.5
1
0.5
0 Colon Women
Rectal Women
Lung Women
Prostate Women
Colon Men
Rectal Men
Patient Diagnosis and Partner Sex
Lung Men
Breast Men
Fig 3. Comparison of health care costs for partners (of cancer patients diagnosed in 2004) age 25 to 64 years with those of the general population (married only), standardized for age and sex. Quotient partner (observed costs) general population (expected costs 2005). Health care costs for partners are equal to costs for the general population when the quotient equals 1.
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Health of the Partner Affected by Tumor Disease
shown that symptoms of depression increase in partners when physical symptoms in the cancer patient aggravate18,19 and when the partner's concern for the patient with cancer increases.20 Being an informal caregiver of the spouse with cancer, which may be the situation when the cancer is advanced, has also been found to be associated with increased psychological morbidity.9,12,18,19,21,24 The higher number of psychiatric diagnoses needs to be scrutinized to exclude that the diagnoses are a surrogate for psychosocial problems in the family or a way to handle increasing demands of help with practical issues such as transportation, medication, hospital visits, and household chores. However, partners of patients with advanced cancer seem to have an increased risk of psychiatric morbidity. Apart from the psychiatric diagnoses, an increase was seen for circulatory diseases (partners of patients with lung cancer) and muscle diseases (especially partners of patients with rectal cancer). One must consider the possibility that some of the somatic conditions might be characterized as psychosomatic. It might also be that the increase in muscle diseases in relation to other morbidity could be explained as a diagnosis to enable sick leave. The pattern of sick leave by partners of patients with cancer will be further explored in a forthcoming study. Differences in sex were seen as health care costs increased more for male partners than for female. The increase was especially noticeable in the groups of younger male partners (age, 25 to 64 years). This has to be related to the fact that women in general have higher health care costs compared with men. Sex differences have been found in previous research, but the literature is inconsistent. One study reported better quality of life for male partners of patients with cancer than for female partners.25 In another study of patients with colon cancer and their partners, both male partners and male patients were found to be more distressed than their wives.26 In contrast, two other studies showed that women, regardless of being patient or partner, reported more distress related to the cancer.13,22 Furthermore, it is reported that being a female spouse caring for a cancer patient with advanced disease is associated with higher likelihood of experiencing depression.21 Sex differences seem to be a complex issue that cannot be isolated as a single factor, and which might be related to those cancer diseases requiring more demanding care at home, but also related to other factors such as age or other contextual variables. An unexpected finding in our study is that partners of patients with cancer had lower health care costs compared with the general population. We sought explanation, but the finding was largely unexplained. It might be that the partner has more focus on the person with cancer before and during the period of cancer diagnosis, disease, and treatment, and less focus on his or her own health. However, a change in the pattern of health care use was seen especially in terms of inpatient care (hospital stays and days in hospital). An increase of inpatient care was seen most obvious in the second year after the cancer diagnosis among partners of patients with colon and lung cancer, and therefore seems to be correlated to diagnoses with lower survival rates. This might be related to the psychological burden, but it could also be a result of having set the own health aside for a period of time.
A limitation of the study is that we were only able to include the partner/spouse, and there might be other significant persons who can play an important role in supporting the person with cancer. The role of parents, siblings, children, and presence of close friends also needs to be explored. These are persons in the social network which might have a significant impact on both the person with cancer and the partner. The role of the partner/spouse in relation to survival of the patient with cancer will be evaluated in a coming study. In this study, information on former life partners (divorcees, dead) is missing, and no data is available on divorce rates of the sample during the period. Attrition due to moving out of the region was analyzed and was found to be lower than 1%. The health care use and health care costs for the partner of patients with cancer have not been explored before this study. This population-based study with years of follow-up study gives strength, and the findings contribute, to the knowledge about the indirect costs of cancer. In conclusion, patients' type of cancer and disease stage has an impact on partners' reaction and its consequences in terms of health care use and health care costs. Being a partner of a person with cancer means an increased risk in psychiatric morbidity. With an increase in cancer incidence, treatments with longer duration and a major part of cancer care are provided on an outpatient basis, which means that the demands and burden on the family of the cancer patient are likely to increase. Discussion is needed about the responsibility for the care of the partner--should oncology care also include the family? The emotional and physical well-being of the partner is of importance both from a medical point of view as well as of social perspective. Future studies are also planned to investigate sick leave for the partner, in order to further explore the indirect costs of cancer related to the partner. Qualitative studies needs to study the situation of the cancer patient parallel to the partner. This knowledge is needed as a base for further interventional research with the aim of family-focused care in order to support both the patient with cancer and significant persons in the immediate surrounding. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The author(s) indicated no potential conflicts of interest. AUTHOR CONTRIBUTIONS Conception and design: Thor Lithman, Hеkan Olsson Provision of study materials or patients: Thor Lithman, Dennis Noreen Collection and assembly of data: Thor Lithman, Dennis Noreen data analysis and interpretation: Katarina SjoЁvall, Bo Attner, Thor Lithman, Barbro Gunnars, Bibbi Thomeґ, Hеkan Olsson Manuscript writing: Katarina SjoЁvall, Barbro Gunnars, Bibbi Thomeґ, Hеkan Olsson Final approval of manuscript: Katarina SjoЁvall, Bo Attner, Thor Lithman, Barbro Gunnars, Bibbi Thomeґ, Hеkan Olsson
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