A cross‐sectional study of distress: A cancer response

Abstract Aim To describe the experience of distress in people with cancer of working age. Design A cross‐sectional study. Methods In this cross‐sectional study, patients (N = 168) with both ongoing (N = 56) and completed treatment (N = 105) completed the Distress Thermometer and the detailed problem list. Data were analysed by descriptive and analytical statistics. Results A large proportion of patients (29%) continued to experience high distress (>3 according to the Distress Thermometer) even after treatment was completed. Patients experienced several problems after treatment had ended such as fatigue (44%), sleep problems (34%), worries (31%), pain (31%), tingling in hands and feet (31%) and problems with memory/concentration (30%). Patients with financial/insurance problems had significantly higher distress than those who did not have these problems.


| INTRODUC TI ON
The number of cancer cases is increasing continuously, this means that one out of three Swedes will be diagnosed with cancer during their lifetime. If this trend continues, every second Swede will suffer from a cancer diagnosis by 2030 (Swedish Cancer Society, 2017).
All people with cancer experience some degree of distress as a direct result of the disease, regardless of which phase of the disease the patient is in. Cancer-related distress can include feelings about vulnerability, grief and fear, as well as problems that can be disabling, such as depression, anxiety, panic, social isolation and existential and spiritual crises. Distress occurs from the time of the diagnosis and might affect a patient's everyday life for a long time to come (NCCN, 2013). Furthermore, distress can lead to poorer quality of life, poorer adherence to treatment and affect the patient's satisfaction with medical care (Tonsing & Vungkhanching, 2018). Many people with cancer are of working age and will return to work after treatment and sick leave. It is important that their cancer care is suitable for the various complications that might arise during the various phases of cancer and its treatments. This can also explain how living with a cancer diagnosis affects patients.

| BACKG ROU N D
There are large variations in the degree of distress experienced by patients and the areas that affect distress including gender, age and marital status. Research shows that more women than men experience a high degree of distress (Mehnert et al., 2016). In general, younger patients have a higher degree of distress regardless of best applied in the middle of active treatment or a short time after, whereas patients believe that the Distress Thermometer is optimal from the middle of the treatment but even better after the treatment is completed when symptoms and consequences are more prominent (Biddle et al., 2016). Based on a meta-analysis with 42 studies and 14,808 patients, it was concluded that the Distress Thermometer is a validated instrument for detecting potential distress in people with cancer (Ma et al., 2014). A Swedish study including patients with different cancer diagnoses showed the same result (Thalén-Lindström, Larsson, Hellbom, Glimelius, & Johansson, 2013). The use of the Distress Thermometer-which is relatively short-is an effective way of assessing the degree of distress experienced by the patient and the problems that contribute to the experience of distress (Bulli et al., 2009). Thayssen et al. (2016) examined how patients experience completing the Distress Thermometer before a doctors' visit and propose that this stimulates the patient's ability to reflect on their situation and gives them the opportunity to address what they want from their doctor or nurse. The patients consider it positive and valuable to complete the Distress Thermometer.
Many published studies have been conducted in non-European settings, about distress and its effects on people with cancer, using the Distress Thermometer (Burgoyne et al., 2015;Koyama et al., 2016;Tonsing & Vungkhanching, 2018), some studies have also been conducted in Europe (Biddle et al., 2016;Jorgensen et al., 2016) but only a few in Sweden (Thalén-Lindström et al., 2013), and none of the studies have had focused on working-age patients; therefore, it is important to illuminate how distress is manifested in people with cancer of working age in a European country such as Sweden. Due to the consequences of treatment/illness, the target group is at risk for an extended reduced working capacity with accompanying financial worry. Thus, the aim of this study is to describe this distressing experience in working-age people with cancer in southern Sweden via the Distress Thermometer.

| DE S I G N
This cross-sectional study is drawing on empirical material from another study, which aimed to investigate the cancer rehabilitation experiences of working-age cancer survivors; therefore, a more detailed description of the data collection and the participants is found in Garmy and Jakobsson (2018).

| Method
The study was performed at the Cancer Rehabilitation Clinic on a medium size hospital in southern Sweden. The Cancer Rehabilitation Clinic cooperated with the Swedish Social Insurance Agency in five neighbouring municipalities with between 7000-85,000 inhabitants per municipality. A questionnaire and information were distributed in October 2016 via mail to all patients over the age of 18 years who had a cancer diagnosis and were enrolled in the Swedish Social Insurance Agency in the included municipalities from January 2013-April 2016 (N = 384). One reminder was sent after 4 weeks. Written informed consent was requested and was completed by hand and returned together with the questionnaire in a provided stamped reply envelope. A total of 168 patients answered the questionnaire (response rate of 44%).

| Background data
The questionnaire consisted of questions about background data: gender, age, civil state, children, birth country, other diseases, ongoing treatment, long-term treatment, psychiatric disease and addictions.

| The distress thermometer
The Distress Thermometer is an assessment tool that measures distress and is provided by the National Comprehensive Cancer Network (NCCN). The form contains two parts: the thermometer where the patient estimates the degree of distress in the last week on a visual analog scale from 0-10 and a problem list with 39 common problem areas related to cancer and its treatment (Eckerdal, 2017).
By understanding the underlying causes of distress, the health professional can better apply targeted interventions and thus reduce the distress of the people with cancer (Tonsing & Vungkhanching, 2018).

| Analysis
Data were analysed by descriptive and analytical statistics with means, standard deviations and percentages. A t test was used to investigate if there were age or gender differences between those who had ongoing treatment versus those who had completed treatment. Bivariate analyses were used with a chi-squared test between those who had ongoing and completed treatment in relation to the issues of the Distress Thermometer. Bivariate analysis and multiple logistic regression were used to compare the 0-3 and 4-10 distress groups and identify risk factors for distress. The variables for the risk factors associated with distress agreed with practical experience.
The Hosmer Lemeshow and the Nagelkerke R 2 tests were reported for the logistic regression analysis. IBM SPSS version 22 was used for analysis.

| RE SULTS
A total of 168 persons reported on having distress or not, and 161 persons reported on ongoing or completed cancer treatment. Most (65%) of the participants completed their cancer treatment while 35% had ongoing cancer treatment in some form; however, the groups did not differ based on gender, country of birth and family situation (Table 1).
A high degree of distress was defined as >3 according to the Distress Thermometer. Table 2 shows the prevalence of various problem areas that affected distress and the stated degree among those with ongoing or completed treatment. Of those who had completed their treatment, 29% still had a high degree of distress. Of those with ongoing treatment, 48% had a high degree of distress. Patients experienced several problems after treatment had ended such as fatigue (44%), sleep problems (34%), worries (31%), pain (31%), tingling in hands and feet (31%) and problems with memory/concentration (30%). Patients with financial/insurance problems had significantly higher distress than those who did not have these problems.
The degree of distress was dichotomized into groups of low (0-3) and high (4-10) distress. The bivariate analysis explored whether there was any significant correlation between the degree of distress and age, sex, living with partner or alone, having children under 18 years old, living in the home, other bodily diseases, mental illness, completed treatment, ongoing treatment or some form of long-term treatment. The analysis shows that there was a significant relationship (p < .05) between insurance/finance problems and a high degree of distress. There was also a significant relationship (p < .05) between the degree of distress and cancer treatment ( showed that there was a significant relationship (p < .05) between the degree of distress and insurance/finance problems. Ongoing or completed treatment was not a significant factor in this analysis (Table 4).

| D ISCUSS I ON
The patients in our study described a high degree of fatigue regardless of whether they were undergoing treatment or if they had finished treatment. Kurt and Unsar (2010) demonstrated that symptoms such as fatigue are common during treatment but could also persist for as long as years after the end of treatment. A metaanalysis of fatigue reported that patients who completed their treatment during the first half of the year experienced a progressively decreasing degree of fatigue, but it could take up to several years before it completely disappeared (Kurt & Unsar, 2010). According to Islam et al. (2014), fatigue can be a factor that is directly associated with difficulties in eventually returning to work. For this reason, it is very important to identify those patients who have a continued high degree of fatigue even after treatment has been completed. Thus, they can have an individually adapted rehabilitation plan for successful recovery.
Previous work showed that patients who have completed their treatment are expected to quickly and fully return to their everyday life as if nothing has happened (Stanton et al., 2005) (Meleis & Trangenstein, 1994). This means that the patient, after completion of treatment, now has a new "normal" because it is no longer possible to return to the state before the cancer due to continuing symptoms. Thus, there is a long-term and continuing need for rehabilitation in this patient group.