BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002608 on 4 December 2020. Downloaded from http://spcare.bmj.com/ on December 7, 2020 at Univesity Autonomous Original research Family caregiver emotional distress in advanced cancer: the DME-­C scale psychometric properties Joaquín T Limonero ‍ ‍,1 Jorge Maté-Méndez ‍ ‍,1,2 María José Gómez-­Romero ‍ ‍,1,3 Dolors Mateo-­Ortega ‍ ‍,4 Jesús González-­Barboteo ‍ ‍,5 Montserrat Bernaus,6 Montserrat López-­Postigo,6 Agustina Sirgo,7 Silvia Viel,1,8 Cruz Sánchez-­Julve,9 Ramon Bayés,1 Xavier Gómez-­Batiste ‍ ‍,10,11 Joaquín Tomás-­Sábado ‍ ‍12 ►► Additional material is ABSTRACT Conclusions The DME-­C displays good published online only. To view, psychometric properties. It is simple, short, Background Family caregivers of patients with please visit the journal online (http://​dx.​doi.o​ rg/​10.​1136/​ advanced illness at end of life often report high reliable and easy to administer. We believe that bmjspcare-​2020-​002608). levels of emotional distress. To address this the instrument is useful for the detection of emotional distress is necessary to have adequate emotional distress in the family caregivers of For numbered affiliations see end and reliable screening tools. hospitalised patients suffering from end-­stage of article. illnesses and receiving PC. of Barcelona. Protected by copyright. Aim This study analyses the psychometric Correspondence to properties and clinical utility of the Family Professor Joaquín T Limonero, School of Psychology. Stress Caregiver Emotional Detection Scale for and Health Research Group, caregivers of patients with end-­stage cancer Universitat Autonoma de INTRODUCTION (DME-­C, Spanish acronym) who are receiving The family members of patients suffering Barcelona Facultat de Psicologia, 08193 Bellaterra, Catalunya, palliative care (PC). from advanced illnesses and nearing the Spain; ​joaquin.​limonero@​uab.​cat Design Multicentre, cross-­sectional study. end of their lives often feel threatened Received 28 July 2020 Settings/participants Family caregivers of or powerless as they face the inevitability Revised 3 November 2020 patients with advanced cancer at end of life of loss.1 They can sometimes experi- Accepted 16 November 2020 receiving palliative treatment were interviewed ence high degrees of emotional distress.2 to explore their emotional distress through the Family members serve as the main source DME-­C scale and other instruments measuring of emotional support for these end-­stage anxiety and depression (Hospital Anxiety and patients, as they tend to be the main Depression Scale (HADS)), distress thermometer providers of both practical and emotional (DT) and overload (B), as well as a clinical care, and a special burden is often placed psychological assessment (CPA). on the family caregiver.3 Most caregivers Results 138 family caregivers, 85 (61.6%) feel unprepared for their role, they do not female and 53 (38.4%) male, with an average have the experience to manage the patient, age of 59.69±13.3 participated in the study. the illness or related practical issues including one’s own emotions or those The reliability of the scale, as measured by of patients or other family members.4 Cronbach’s alpha, was 0.76, and its stability over Aspects related to psychological variables, time was 0.734. Positive, significant correlations as well-­being or anxiety, have a high influ- © Author(s) (or their were found between the DME-­C and the scores ence in the burden of care at end-­of-­life employer(s)) 2020. Re-­use for anxiety and depression registered on the permitted under CC BY-­NC. No situations.5 According to the studies, these HADS scale, as well as with the total result of commercial re-­use. See rights aspects influence the degree of emotional and permissions. Published by this latter scale and the results for B, the DT and distress caregivers experience that ranges BMJ. the CPA. A statistical analysis of the receiver-­ between 25% and 65% depending on To cite: Limonero JT, Maté- operating characteristic curves showed that the studies or scales of measures used.1 Méndez J, Gómez-­Romero MJ, scale has a sensitivity and specificity of 75%, To ensure that family members are fully et al. BMJ Supportive & and that the cut-­off point for the detection of Palliative Care Epub ahead able to care for these patients, there is a of print: [please include Day emotional distress was a score ≥11. Fifty-­four need for early detection of any sources of Month Year]. doi:10.1136/ per cent of the caregivers displayed emotional real, imagined and/or potential suffering bmjspcare-2020-002608 distress according to this scale. of patients and their families. It is also Limonero JT, et al. BMJ Supportive & Palliative Care 2020;0:1–8. doi:10.1136/bmjspcare-2020-002608 1 BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002608 on 4 December 2020. Downloaded from http://spcare.bmj.com/ on December 7, 2020 at Univesity Autonomous Original research vital to identify their most pressing concerns, needs, of caregivers can fluctuate along with the patient’s priorities and preferences.6 7 In the field of palliative changing circumstances. This mutability over time care (PC), the family caregiver (also called the primary means that there is a need for reliable, practical and or informal caregiver) is the family member (partner, non-­invasive instruments that can detect and monitor child, sibling or other relatives) or friend who accom- changes in the level of suffering to offer the best panies and cares for the patient at a PC unit or service, possible treatment. spending a large proportion of his or her time offering Advanced illnesses, especially the processes before this care without receiving any economic compensa- the end of a person’s life, are complex situations, tion in exchange. These caregivers have a significant and in this context psychological research often faces emotional bond with the patient and tend to play obstacles15 due to patients’ vulnerability and fragility. key roles in ensuring the reorganisation, maintenance Therefore, there is a need to develop specific instru- and cohesiveness of their families during this period8 ments with good psychometric properties16 17 that providing emotional and practical assistance.9 can analyse the suffering and needs of main care- Wittenberg-­Lyles et al10 found that when such family givers. Some scales developed in other contexts have members are worried and display significant levels of been used to assess depression or anxiety in care- emotional distress and suffering, the patients them- givers, such as the Hospital Anxiety and Depression selves are likely to experience greater suffering as well. Scale (HADS).18 Other scales assess caregiver needs, This phenomenon, called ‘reciprocal suffering’, has more for epidemiological purposes than for detection negative consequences for the patient’s overall well-­ or treatment,19 quality of life scales20 or resilience.21 being. The National Institute of Clinical Excellence However, in general, these scales are not specific to (NICE)11 guidelines on how to improve PC emphasise caregivers of patients receiving PC or are not adequate the need to provide both caregivers and their fami- because they contain too many items that could add lies with sources of information, support and advice. additional fatigue or discomfort to the caregiver. About These resources help them carry out their caregiving caregiver overload, a large number of them have been of Barcelona. Protected by copyright. tasks, and they act as a preventive factor against developed,22 but they generally suffer from the same emotional distress and while facilitating the processes problems as the previous scales.23 24 of emotional adjustment and adaptation both during This would address the lack of reliable measurement the illness itself and in the subsequent mourning indicators in this area, often a barrier to expanding period. In the context of caring for a loved one with knowledge of the effectiveness of PC. In light of all an advanced illness, it is hardly surprising that family of the above, and especially of this lack of instruments caregivers tend to display emotional distress and to gather information on emotional distress in the suffering. These caregivers face extreme experiences main caregivers of advanced and end-­stage oncology that come with a high degree of emotional impact and patients, the research team had developed along with the significant difficulties inherent in adapting similar lines to a previous measurement tool they had to rapidly changing and evolving situations that place developed, but this time aimed at main caregivers.25–27 great demands on their resources.1 7 12 A description of the systematic process used to develop The ‘Threats-­Resources’ model created by Bayés et this scale to measure the emotional distress of family al13 can be applied to both patients and caregivers. caregivers of patients with advanced and end-­ stage According to this model, the caregiver tend to suffer illnesses (Caregiver Emotional Detection Scale (DME-­ when they experience internal and/or external symp- C)), as well as the scale’s components, can be found toms that they view as threatening to their physical in Limonero et al.28 Thus, the objectives of this study and/or psychological health, and when they feel they are (1) to assess the scale’s psychometric properties, lack the resources to deal with these symptoms or and (2) to confirm its clinical validity for screening and that the resources at their disposal cannot effectively early identification of emotional distress in caregivers reduce the potential threat. They experience feelings of patients with advanced or end-­stage cancer. of impotence when they cannot successfully confront these threats, resulting in suffering. This suffering on MATERIALS AND METHODS the part of caregivers is also subject to the positive Study design and setting or negative influence of the caregiver’s mood. Later In this multicentre, cross-­sectional study, the DME-­C research broadened the scope of measurement of this scale was administered to caregivers of patients in four phenomenon with the Integrated Suffering Model,14 PC units in the Autonomous Region of Catalonia, which shows that caregivers tend to suffer when their Spain. The inclusion criteria called for participants coping strategies and regulation processes are dysfunc- who were: (1) over 18 years old; (2) main caregivers tional or when the situation lasts for a long period, of oncology patients with advanced, end-­stage cancer; resulting in exhaustion. This is a dynamic situation, (3) who had received care from a PC team; (4) were and conditions may vary along with the evolution of able to hold a conversation and answer the questions the patient’s illness. The cases of terminally ill patients they were asked; and (5) participated voluntarily and often evolve quite quickly, and the degree of suffering signed informed consent. Excluded from the sample 2 Limonero JT, et al. BMJ Supportive & Palliative Care 2020;0:1–8. doi:10.1136/bmjspcare-2020-002608 BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002608 on 4 December 2020. Downloaded from http://spcare.bmj.com/ on December 7, 2020 at Univesity Autonomous Original research another for healthcare professionals. The caregiver is asked to respond to two questions related to mood and the results of the process of adaptation to the situa- tion of the illness of their family member. The ques- tions are answered on a visual numerical scale from 0 to 10. Additionally, information is collected as to the presence or absence of worry and the intensity of this worry (0–10). The second part of the scale is an obser- vation tool for healthcare professionals, allowing them to record external signs of emotional distress in the caregiver. The professional registers the presence or absence of these signs and records their overall inten- sity (0–10) (see figure 1). The DME-­C yields a total score (0–20) made up of the sum of the scores on the items related to mood and coping. The questions on worries and external signs of emotional distress allow healthcare professionals to offer more specific care, and they validate the overall score for the DME-­C. To analyse the convergent validity of the DME-­C, the following instruments were administered: The Distress Thermometer (DT) created by Holland et al31 is a numerical scale consisting of a single item measuring the overall emotional distress experienced by the caregiver on a scale of 0–10. The sensitivity of Barcelona. Protected by copyright. values found for this instrument fluctuate between 75% and 80%, and its specificity is about 60%. According to the creators of the tool, scores ≥4 indicate the pres- ence of emotional distress Figure 1 Caregiver Emotional Distress Detection Hospital Anxiety and Depression Scale (HADS).18 Questionnaire (DME-­C) administered to the main caregivers of This scale detects the presence of anxiety and depres- patients with advanced or end-­stage illness. sion in non-­psychiatric hospital settings. It consists of 14 items presented in a four-­point Likert-­type format were those who did not meet these criteria, as well as (range from 0 to 3). Seven of the items make up the some who did meet the criteria but were experiencing anxiety subscale and the other seven measure depres- highly emotional situations as their family members sion. The maximum score for each subscale is 21 points, were in the final days of their lives. The sample size was with scores obtained by adding up the points for the calculated to meet the criterion for recruiting partici- items, each of which corresponds to a symptom. The pants according to the number of items of the instru- two subscales have been shown to have the same cut-­ ment validated. In this sense, we follow the criteria off points, values that are generally between 8 and 10. of Gorsuch29 that suggests a ratio of five subjects for The internal consistency of the scale measured through each item but never <100 subjects, and Boateng et Cronbach’s alpha was 0.81 for the anxiety subscale al30 suggest a ratio of 10 per item. According to these and 0.83 for the depression subscale. recommendations, we used a convenience sample of Abbreviated Zarit Scale on Perceived Caregiver Over- 148 caregivers. Each PC unit recruited 37 caregivers. load.32A reduced seven-­ item scale with Likert-­ type Thus, a convenience sample of 148 adults caregivers questions for which respondents can choose among was invited to take part in the study. Of them, 8 (5.4%) five possible answers (never-­ always). The instru- declined to participate in the study. Two participants ment measures the extent to which family members were excluded due to incomplete assessment data, of patients receiving PC feel overwhelmed. The tool leaving a final sample of 138 caregivers. explores feelings of overload, self-­care and the loss of social or family roles. According to the authors, the Measurement test displays a sensitivity and specificity of 100%, and In addition to collecting data on variables related to the scores ≥17 indicate that the family is overwhelmed. illness and sociodemographic variables, the researchers The Cronbach’s alpha for this study was 0.84. administered the following instruments: Clinical psychological interview. A psychologist with Emotional Distress Detection Questionnaire for care- experience in PC conducted independent, semistruc- givers of patients with advanced, end-­ stage illnesses tured interviews with the participants to assess their (DME-­C) developed by Limonero et al,28 which overall degree of emotional distress using a five-­point consists of two parts, one aimed at caregivers and Likert-­type scale, where a score of 1 indicated ‘no Limonero JT, et al. BMJ Supportive & Palliative Care 2020;0:1–8. doi:10.1136/bmjspcare-2020-002608 3 BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002608 on 4 December 2020. Downloaded from http://spcare.bmj.com/ on December 7, 2020 at Univesity Autonomous Original research Table 2 Descriptive statistics Overall Overall score HADS anxiety HADS depression Overall HADS psychological Distress DME-­C Zarit overload subscale score subscale score score assessment thermometer Mean (SD) 11.21 (4.24) 18.64 (7.5) 9.67 (5.38) 6.79 (3.98) 16.46 (8.81) 2.95 (0.92) 4.65 (2.71) (CI 95%) (10.41–11.84) (17.36–19.83) (6.1–9.61) (6.85–11.14) (13.60–19.32) (2.75–3.17) (3.55–5.74) Percentile 25 9 13 5 4 9 2.00 3 50 11.00 17 10 7 16 3.00 5 75 14.00 23 14 9 22 4.00 8 DME-­C, Caregiver Emotional Distress Detection Questionnaire; HADS, Hospital Anxiety and Depression Scale. distress’ and five indicated ‘severe emotional distress’. Main results The duration of the interview was between 15 and The caregivers recorded an average emotional distress 20 min. score of 11.21±4.24, and it was observed that about The DME-­C was administered by a doctor or nurse half of the caregivers registered scores ≥ 11 points. To in the course of the first 3 days after the patient had identify any difference in the prevalence of distress as been admitted to the PC unit. On the same day, and a function of the hospital, the non-­parametric Kruskal-­ around the same time, the caregiver was visited by Wallis test was carried out (χ2=6.52; df=4; p=0.089), the psychologist, who conducted the semistructured with the results showing no variation between the PC interview and clinically assessed the caregiver’s overall units in the study. degree of emotional distress and administered the Table 2 shows the descriptive data for the variables in remaining instruments. the study. It displays the DT scores, the HADS subscale and overall scores, the scores on the abbreviated Zarit Statistical analysis overload test and the results of the psychologist’s clin- of Barcelona. Protected by copyright. The data analysis was carried out using the software ical assessments. program Statistical Package for the Social Sciences (SPSS, V.25). Descriptive indices and intraclass correla- Internal consistency and test–retest reliability tion coefficients were calculated, and the χ2 test, non-­ The reliability of the DME-­ C was calculated by parametric Kruskal-­ Wallis test was carried out. A measuring its internal consistency in the form of Cron- receiver-­operating characteristic (ROC) curve analysis bach’s alpha, with a result of 0.76. The stability of the was also carried out to determine the sensitivity and measurement over time (test−retest reliability) was specificity of the scale. In all cases, statistical signifi- determined by calculating the intraclass correlation cance was set at p<0.05. coefficient. This calculation made use of data collected from 37 of the 138 caregivers, with an average of 4 days RESULTS elapsing between the two tests. The value obtained was Descriptive data 0.734 (p<0.01). The final convenience sample was 138 caregivers (90 female and 48 male) with an average age of Criterion validity 59.69±13.3 years. The most common relationship to The intraclass correlation coefficients indicate that the the patient was that of a partner (65.2%), followed by DME-­C had a positive and significant correlation with a child (27.5%) (see table 1). all the variables analysed (overload, clinical psycholog- ical assessment, HADS and its subscales and the distress thermometer). The correlations ranged from 0.42 in Table 1 Caregiver sociodemographic variables the case of the psychological assessment to 0.598 in Variable N (%) the case of the HADS depression subscale (table 3). Gender  Female 85 (61.6%) Establishing the sensitivity and specificity of the DME-C through ROC  Male 53 (38.4%) curve analysis Relationship to patient To establish the clinical utility of the DME-­C, ROC  Spouse/partner 90 (65.2%) curves were drawn to determine the optimal cut-­off  Child 38 (27.5%) point for specificity and sensitivity and identify the  Sibling 8 (5.8%) threshold score for emotional distress on the scale.  Other family member 2 (1.5%) The curves also serve as visual representations of the Resides with patient? test’s balance between sensitivity and specificity.33  Yes 120 (87%) To calculate the specificity and sensitivity of the  No 18 (13%) DME-­C, in light of the lack of a pattern for compar-   Mean (SD) ison or of a gold standard test in the field of PC, Caregiver age (years) 59.69 (13.3) the total score for the DME-­C was compared with a 4 Limonero JT, et al. BMJ Supportive & Palliative Care 2020;0:1–8. doi:10.1136/bmjspcare-2020-002608 BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002608 on 4 December 2020. Downloaded from http://spcare.bmj.com/ on December 7, 2020 at Univesity Autonomous Original research Table 3 Matrix showing intraclass correlation coefficients between the scores on the DME-­C, the Zarit overload scale, the overall HADS (T-­HADS), the HADS subscales measuring anxiety (A-­HADS) and depression (D-­HADS), the psychological assessment (PA) and the distress thermometer (DT) DME-­C ZARIT A-­HADS D-­HADS T-­HADS DT Zarit emotional overload 0.510** – HADS anxiety subscale score (A-­HADS) 0.584** 0.656** – – HADS depression subscale score (D-­HADS) 0.598** 0.490* 0.766** – – Overall HADS score (HADS) 0.513** 0.554** 0.846** 0.817** – Distress thermometer (DT) 0.580* 0.602** 0.493* 0.475* 0.357** – Overall psychological assessment (PA) 0.427** 0.588** 0.596** 0.548** 0.365* 0.297* *p<05; **p<0.01. HADS, Hospital Anxiety and Depression Scale. combination of the scores recorded on the Zarit over- to detect false positives). The figure for sensitivity at load scale, the HADS scale (the overall score), the this point on the curve was 74.6%, while the degree distress thermometer and the clinical psychological of specificity was calculated at 74.45%. Caregivers assessment. scoring scores below 11, then, would be found not to A reference variable was created to determine the be suffering from emotional distress, while those with presence or absence of emotional distress in each scores ≥ 11 would be above the threshold for such participant. It was based on a combination of the distress. Overall scores on the scale can range from 0 threshold values of the HADS scale (HADS ≥17), the to 20. According to the cut-­off figure established, 54% distress thermometer (≥4), the abbreviated Zarit scale of the caregivers displayed emotional distress. (≥17) and the psychological assessment. A comparison The DME-­C also observes the worries of caregivers. of Barcelona. Protected by copyright. of the values of this variable with those recorded for Of the caregivers in the study, 66% displayed worries the DME-­C scale shows an area below the curve of related to emotional issues. The second most common 0.82 (p<0.01), with a CI at 95% of 0.767–0.897(see kinds of worry were relateds to their relative’s illness Figure 2). Thus, the diagnostic capacity of the DME-­C and the family (58%) (see table 4). A comparison of was demonstrated and the cut-­ off point was estab- the worries displayed by caregivers with emotional lished at a score of 11 on the instrument, as this was the distress and those without emotional distress shows point on the curve with the best relationship between that only in the case of worried related to the illness sensitivity (the capacity to detect caregivers suffering (concerns over physical aspects related to the progres- from emotional distress) and specificity (the capacity sion of the disease and the symptoms) were significant differences apparent, as these kinds of worries were more likely to affect caregivers with emotional distress than those without (χ2=3.97; df=1; p<0.05). This type of worry also registered the highest degree of intensity. The analysis of the intensity of caregivers’ concerns showed that worries about somatic issues had a strong correlation with the intensity of worries about family and emotional issues. Meanwhile, more intense worries about economic issues showed a posi- tive correlation with family concerns. The second part of the DME-­C collects data on the presence of outward signs of emotional distress in the caregiver, as observed by a healthcare professional. The caregivers who had displayed emotional distress according to the first part of the instrument were more likely to show these external signs than those who had not (χ2=6.5; df=1; p<0.01). The caregivers with emotional distress were more likely, to a statistically significant degree, to display ‘visible signs of sadness, fear, crying, feeling overwhelmed’ (χ2=23.45; df=1; p<0.001); ‘difficulty in separating from the patient: the family refuses to leave the patient and insists Figure 2 Receiver-­operating characteristic (ROC) curve to on making healthcare decisions’ (χ2=17.22; df=1; determine the sensitivity-­specificity of the overall score on the p<0.001); and ‘visible signs of rage, irritability or DME-­C scale. disagreement with therapeutic measures’ (χ2=14.04; Limonero JT, et al. BMJ Supportive & Palliative Care 2020;0:1–8. doi:10.1136/bmjspcare-2020-002608 5 BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002608 on 4 December 2020. Downloaded from http://spcare.bmj.com/ on December 7, 2020 at Univesity Autonomous Original research Table 4 Worries: kind, frequency, intensity and relationship with emotional distress (DME-­C) Intensity of worry Family Emotional Somatic Kind of worry N* (%) M (DT) DME-­C concerns concerns concerns Family concerns 42 (30.43) 7.52 (2.18) 0.416*† Emotional concerns 80 (57.97) 8.26 (1.97) 0.284*† 0.732**‡ Somatic concerns 51 (36.96) 8.83 (1.36) 0.633**† 0.992*‡ 0.992**† Economic concerns 11 (7.97) 6.5 (3.2) 0.56‡ 0.49*‡ 0.105‡ 0.15‡ Spiritual concerns 1 (0.72) – – – – – Note: *p<0.05; **p<0.01. *n=185: Some patients displayed more than one kind of worry. †Pearson correlation. ‡Spearman correlation. df=1; p<0.001). No significant differences were and of itself have therapeutic value, as indicated by the found in the rest of the external signs assessed between expert caregivers who participated in the early stages of caregivers with emotional distress and those without. the scale’s development and the prima facie validation phase. This has also been observed in the development of DISCUSSION other scales.26 27 The main caregivers of patients with advanced or end-­ The applicability of the DME-­C is further supported stage illnesses tend to experience a large emotional burden, by the fact that it was administered to caregivers of a which can lead to emotional distress or suffering.1 To make range of ages, of different genders and in different PC possible early detection of caregiver suffering by health- units. Despite this diversity, they did not experience any care professionals, it is necessary to have specific and easily apparent difficulties in understanding and responding to of Barcelona. Protected by copyright. applied screening instruments that offer a valid, reliable the items,27 which is evidence in favour of expanding the and clinically significant measurement of this distress.34 It use of the instrument. is only through such early detection that professionals can Our results show that more than half of the caregivers offer timely intervention and care to ease the suffering of were experiencing emotional distress, pointing to a need caregivers. to address the sources of this distress and to better serve The results of this study confirm the validity and reli- caregivers’ needs.4 21 The fact that caregivers’ psychoso- ability of the DME-­C as a tool to screen for emotional cial needs often change along with the evolution of the suffering in caregivers of advanced stage oncology patients’ illness highlights the need for instruments that patients based on the theoretical framework previ- can monitor these emotional dynamics, systematically ously commented of Bayés et al,13 and Krikorian and record the changes that occur and respond to evolving Limonero.14 The internal consistency analysis, carried out needs.36 37 Because it is brief, easy to understand, ethical via the calculation of Cronbach’s alpha, yielded a value of and non-­invasive, and because it measures aspects that 0.76, indicating an acceptable degree of consistency, given caregivers recognise as important, the DME-­ C can be that the test is basically made up of two items (mood and administered repeatedly. This opens up possibilities for coping). Meanwhile, the stability of the results over time longitudinal studies of emotional distress and analysis of (test–retest reliability), as measured through the intraclass the effects of healthcare to support caregivers. correlation coefficient after 4 days, was 0.734, an accept- Meanwhile, the data on caregivers’ worries shed able degree of stability. The fact that the DME-­C is a very light on some specific aspects that could play a role short test, with only three items, represents an advantage, in the emotional distress of caregivers and affect their in that the instrument can be used repeatedly in longi- psychosocial needs. This information could help iden- tudinal studies without causing fatigue in the caregivers. tify warning signs that indicate a caregivers’ need to be While this brevity does have the potential to detract from referred to a specialist, or on the contrary, identify their the test’s internal consistency, the DME-­C nonetheless has strengths and their relationship with their emotional enough level of internal consistency and stability for a test state.38 with so few items.35 Finally, the DME-­C assesses outward signs of emotional The validity analysis demonstrated that the scores on distress (behaviours and emotions), informing a more the DME-­ C exhibited the expected correlations with comprehensive assessment of the caregiver’s emotional other measures, displaying positive and significant correla- distress. Our data show that caregivers suffering from tions with the caregivers’ emotional overload, the overall emotional distress are more likely to exhibit these HADS scale and its subscales (anxiety and depression), the external signs than those who are not.4 These signs are distress thermometer and the psychological assessment. also easily identifiable and would be especially valuable in We can conclude that, in addition to its good psycho- cases where caregivers experience emotional difficulties, metric properties, the DME-­C examines issues of rele- as they offer an indirect measurement of their emotional vance to caregivers. In fact, the use of the scale could in distress.4 6 Limonero JT, et al. BMJ Supportive & Palliative Care 2020;0:1–8. doi:10.1136/bmjspcare-2020-002608 BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002608 on 4 December 2020. Downloaded from http://spcare.bmj.com/ on December 7, 2020 at Univesity Autonomous Original research Limitations Author affiliations 1 Despite the importance of the findings here, this study School of Psychology, Stress and Health Research Group, Universitat Autonoma de Barcelona, Bellaterra (Cerdanyola del Vallès), Catalunya, Spain has several limitations that merit consideration. The first 2 Psycho-­oncology Care Unit, Institut Catala d’ Oncologia, L’Hospitalet de is connected to the use of a convenience sample of care- Llobregat, Barcelona, Spain givers of patients with advanced or end-­ stage illnesses 3 Psychology Unit, Egarsat, Mutua Colaboradora con la Seguridad Social nº 276, at four different PC units. Nonetheless, the caregivers Terrassa, Barcelona, Spain 4 Palliative Care Unit, Consorci Sanitari de Terrassa, Terrassa, Catalunya, Spain were representative of the respective centres, and the 5 Palliative Care Unit, Institut Catala d’ Oncologia, L’Hospitalet de Llobregat, application of the scale at four different locations would Barcelona, Spain seem to indicate that it can be easily implemented with a 6 Palliative Care Unit, Consorci Corporació Sanitària Parc Taulí de Sabadell, minimal amount of training for healthcare professionals Sabadell, Barcelona, Spain 7 Psycho-­oncology Unit, Oncology Department, University Hospital Sant Joan de and that it could be used in other contexts. Thus, based Reus, Reus, Barcelona, Spain on experience with an emotional detection scale aimed 8 Member of the Group of Psychologists of the Catalan-­Balearic Society for at patients25 26 that is now being administered in homes, Palliative Care, Barcelona, Spain 9 primary care centres and to chronic patients, we believe Palliative Care Unit, Sant Camil Hospital-­Residence Foundation-­Sant Pere de Ribes, Sant Pere de Ribes, Barcelona, Spain that the DME-­C could also be applied in the same settings. 10 The ’Qualy’ Observatory. WHO Collaborating Centre for Public Health The second limitation stems from the fact that this scale Palliative Care Programmes, Institut Catala d’ Oncologia, L’Hospitalet de was administered to caregivers who were able to carry Llobregat, Barcelona, Spain 11 on a continuous conversation, meaning that its use with Chair of Palliative Care, University of Vic, Vic, Barcelona, Spain 12 University of Gimbernat and Tomas Cerda School of Nursing, Sant Cugat del caregivers with communication problems has not been Vallés, Barcelona, Spain tested. However, given the scale’s brevity and simplicity, as well as the additional observation of external signs of Twitter Joaquín T Limonero @JTLimonero emotional distress, it would likely be a great resource to Acknowledgements We would like to express our sincerest identify emotional distress in these caregivers. It is also gratitude to all the caregivers of patients with advanced and worth noting that this scale assesses emotional distress in end-­stage cancer who have contributed with their participation of Barcelona. Protected by copyright. the family caregiver, not in the broader family, which in in this study. our cultural context tends to have a great deal of influence Contributors JTL, JM-­M, DM and MJG-­R designed the study. JM-­M, DM, MJG-­R, MB, ML-­P, AS, SV and CS-­J collected on the care, emotional state and well-­being of the patient. data. JTL, JM-­M, RB and JT-­S analysed data. JTL, JM-­M, JG-­B and XG-­B interpreted results. JTL, JM-­M and JG-­B wrote the Clinical implications manuscript. All authors reviewed the manuscript. Despite these limitations, this study confirms that the Funding This research was carried out, thanks in part to grant DME-­C is a simple, reliable and valid instrument to detect PSI2017-85134-­R from the Spanish Ministry of Economy and emotional distress in the main caregiver (in our study, Competitiveness (MINECO). family caregivers). The fact that the scale does not lead Competing interests None declared. to iatrogenesis could also help ensure its effectiveness at Patient consent for publication Not required. detecting emotional distress. The results of DME-­C would Ethics approval The research protocol was approved by allow the elaboration of strategies aimed at the early each of the Ethics and Clinical Research Committees of the approach to the emotional distress of caregivers to make participating Health Centres (CSPT ref. 2014535; CSdT ref. 29042014; HUSJR ref. 140327/3pro3; FHRSC ref. 14/23) an early referral to a specific professional like a psycholo- and by the Ethics Committee of Animal and Human Research gist or social worker. It is a simple instrument with good of the Universitat Autònoma of Barcelona. This research has psychometric properties, easy to administer and help adhered to Spanish Law 15/1999 governing the protection of any healthcare professional to carry out this evaluation. personal data. Helping ease the suffering of caregivers is an effective way Provenance and peer review Not commissioned; externally to help patients themselves, as family caregivers are the peer reviewed. principal source of patients’ emotional support, regard- Data availability statement All data relevant to the study are included in the article or uploaded as supplementary less of the suffering the former experience as they witness information. the suffering of their loved ones. This scale could support Open access This is an open access article distributed in caregivers in this important work. accordance with the Creative Commons Attribution Non Commercial (CC BY-­NC 4.0) license, which permits others CONCLUSIONS to distribute, remix, adapt, build upon this work non-­ commercially, and license their derivative works on different The chief advantages of the DME-­C over other scales terms, provided the original work is properly cited, appropriate are its brevity, reliability and understandability, as well as credit is given, any changes made indicated, and the use is non-­ the fact that it does not place any additional burden on commercial. See: http://​creativecommons.​org/​licenses/​by-​nc/​4.​ 0/. caregivers, as indicated by prior research to develop the scale,26 a study that also showed that all the caregivers ORCID iDs found the scale suitable, understandable and useful. Joaquín T Limonero http://​orcid.​org/​0000-​0003-​0573-​791X Jorge Maté-Méndez http://​orcid.​org/​0000-​0002-​2385-​3132 This scale allows early screening of emotional María José Gómez-­Romero http://​orcid.​org/​0000-​0003-​2488-​ distress and facilitates referral for specialised interven- 7649 tion based on the detected needs. Dolors Mateo-­Ortega http://​orcid.​org/​0000-​0003-​2726-​7461 Limonero JT, et al. BMJ Supportive & Palliative Care 2020;0:1–8. doi:10.1136/bmjspcare-2020-002608 7 BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002608 on 4 December 2020. Downloaded from http://spcare.bmj.com/ on December 7, 2020 at Univesity Autonomous Original research Jesús González-­Barboteo http://​orcid.​org/​0000-​0002-​8095-​ 19 Lefranc A, Pérol D, Plantier M, et al. Assessment of informal 2102 caregiver's needs by self-­administered instruments: a literature Xavier Gómez-­Batiste http://​orcid.​org/​0000-​0002-​4946-​5947 review. Eur J Public Health 2017;27:796–801. Joaquín Tomás-­Sábado http://​orcid.​org/​0000-​0002-​7156-​7843 20 Weitzner MA, Jacobsen PB, Wagner H, et al. The caregiver quality of life Index-­Cancer (CQOLC) scale: development REFERENCES and validation of an instrument to measure quality of life of 1 Palacio C, Krikorian A, Limonero JT. The influence of the family caregiver of patients with cancer. Qual Life Res psychological factors on the burden of caregivers of patients 1999;8:55–63. with advanced cancer: Resiliency and caregiver burden. Palliat 21 Palacio G C, Krikorian A, Gómez-­Romero MJ, et al. Resilience Support Care 2018;16:269–77. in caregivers: a systematic review. Am J Hosp Palliat Care 2 Fujinami R, Sun V, Zachariah F, et al. Family caregivers' distress 2020;37:648–58. levels related to quality of life, burden, and preparedness. 22 Cooper B, Kinsella GJ, Picton C. 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The relationship between the positive (Hospital anxiety and depression scale) en población aspects of caring and the personal growth of caregivers of psiquiátrica: un estudio de su sensibilidad, fiabilidad y validez. patients with advanced oncological illness: Postraumattic Rev Depto Psiquiatría Facultad de Med Barna 1986;13:233–8. growth and caregiver. Support Care Cancer 2020;28:3007–13. 8 Limonero JT, et al. BMJ Supportive & Palliative Care 2020;0:1–8. doi:10.1136/bmjspcare-2020-002608 BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s) BMJ Support Palliat Care English version of DME-C: Caregiver Emotional Distress Detection Questionnaire administered to the main caregivers of patients with advanced or end-stage illnesses (experimental English version not validated) Limonero JT, et al. BMJ Support Palliat Care 2020;0:1–8. doi: 10.1136/bmjspcare-2020-002608