ORIGINAL ARTICLE
Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis Birgitta Jakobsson Larsson, Karin Nordin, H akan Askmark and Ingela Nygren
Aims and objectives. To prospectively identify different coping strategies among newly diagnosed amyotrophic lateral sclerosis patients and whether they change over time and to determine whether physical function, psychological well-being, age and gender correlated with the use of different coping strategies. Background. Amyotrophic lateral sclerosis is a fatal disease with impact on both physical function and psychological well-being. Different coping strategies are used to manage symptoms and disease progression, but knowledge about coping in newly diagnosed amyotrophic lateral sclerosis patients is scarce. Design. This was a prospective study with a longitudinal and descriptive design. Methods. A total of 33 patients were included and evaluation was made at two time points, one to three months and six months after diagnosis. Patients were asked to complete the Motor Neuron Disease Coping Scale and the Hospital Anxiety and Depression Scale. Physical function was estimated using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale. Results. The most commonly used strategies were support and independence. Avoidance/venting and information seeking were seldom used at both time points. The use of information seeking decreased between the two time points. Men did not differ from women, but patients ≤64 years used positive action more often than older patients. Amyotrophic Lateral Sclerosis Functional Rating Scale was positively correlated with positive action at time point 1, but not at time point 2. Patients’ psychological well-being was correlated with the use of different coping strategies. Conclusions. Support and independence were the most used coping strategies, and the use of different strategies changed over time. Psychological well-being was correlated with different coping strategies in newly diagnosed amyotrophic lateral sclerosis patients. Relevance to clinical practice. The knowledge about coping strategies in early stage of the disease may help the nurses to improve and develop the care and support for these patients.
Authors: Birgitta Jakobsson Larsson, PhD Student, RN, Registered Nurse, Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala; Karin Nordin, PhD, Licenced Psychologist, Department of Public Health and Caring Science, University of Uppsala, Uppsala, Sweden and Department of Global Health and Primary Care, University of Bergen, Norway; H akan Askmark, PhD, MD, Neurologist and Professor, Department of Neuroscience,
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What does this paper contribute to the wider global clinical community?
• The choice of coping strategies • •
changes during the disease progression. The use of coping strategies correlates with psychological wellbeing. Knowledge about variation in the use of coping strategies is important in the clinical settings to be able to support the patient over time.
Neurology, Uppsala University Hospital, Uppsala; Ingela Nygren, PhD, MD, Neurologist, Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala, Sweden Correspondence: Birgitta Jakobsson Larsson, Registered Nurse, Department of Neuroscience, Neurology, Uppsala University Hospital, S 751 85 Uppsala, Sweden. Telephone: +46 18 6112875. E-mail: [email protected]
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155, doi: 10.1111/jocn.12557
Original article
Coping among newly diagnosed ALS patients
Key words: amyotrophic lateral sclerosis, coping, emotional well-being, motor neuron disease Accepted for publication: 18 December 2013
Introduction Amyotrophic lateral sclerosis (ALS) is a fatal disease, with impact on both physical function and psychological wellbeing of the patients. Even though coping with ALS has been investigated, there is a lack of knowledge in coping among newly diagnosed ALS patients. This knowledge is important for the healthcare personnel who provide care and treat recently diagnosed patients.
Background Amyotrophic lateral sclerosis is a neurodegenerative disorder with no known cure, in which the motor neurones responsible for controlling voluntary muscles are affected. The patients gradually develop muscle atrophy and weakness. Most often, the disease starts with weakness in one arm or leg, that is, ‘limb onset’, but the disease can also start with speech and/or swallowing difficulties, that is, ‘bulbar onset’. The disease often starts at 55–70 years of age, and most of the patients are dead three to five years after the start of symptoms. The most common cause of death is respiratory failure (Wijesekera & Leigh 2009, Musaro 2012). During the disease, the patient has to face different changes that affect him or her both physically and socially, and the symptoms may lead to dependence on others and change in lifestyle (Ganzini et al. 2002). Coping can be described as ‘the process by which people try to manage the perceived discrepancy between the demands and the resources they appraise in a stressful situation’ (Sarafino 1994). A distinction can be made between problem-focused coping, that is, ‘aims at modifying the source of stressor’, and emotion-focused coping, that is, ‘aims at reducing or managing the emotional stress that is associated with the situation’ (Lazarus 1985). ALS is a progressive disorder, and the patients will probably require different coping strategies at different stages of the disease (Gallagher & Monroe 2006). Bungener et al. (2005) found that younger ALS patients often use problem-focused strategies, whereas older patients often use emotion-focused strategies to cope with the disease. Recently diagnosed patients (less than six months) preferred emotion-focused coping strategies. Optimism, flexibility and humour are found to be important
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
strategies that many ALS patients use to cope with their situation. Moreover, spirituality and religious practice such as prayer, meditation and belief in God are important sources of support in coping with ALS (Nelson et al. 2003). Montel et al. (2012) found that the most common strategy was acceptance. They also found that to cope with the disease, ALS patients used religion more often than the general population and women tended to look for emotional support more often than men. Hugel et al. (2010) found that 31% of the patients were ‘non-copers’ and that the patients in this group were younger and reported significantly more anxiety and depression than copers. Knowledge about coping in newly diagnosed ALS patients is scarce. To our knowledge, only one prospective study (Hugel et al. 2010) with newly diagnosed ALS patients over time has been conducted, in which a scale validated for ALS [the Motor Neuron Disease (MND) Coping Scale] has been used. On the whole, few studies on ALS and coping have been reported, and to our knowledge, there is no study on newly diagnosed ALS and coping carried out in Scandinavia. The aim of the study was to prospectively identify what coping strategies ALS patients use and whether their coping strategies changed from diagnosis to six months after diagnosis. We also wanted to determine how much anxiety and depression the patients reported. An additional aim was to investigate coping on the one hand and emotional distress and physical function on the other and to determine whether there were differences between women and men and between patients aged ≤64 and ≥65 with respect to coping strategies used.
Methods Design This was a prospective study with a longitudinal and descriptive design with a quantitative approach. Questionnaires were used for data collection. According to El Escorial criteria (Brooks et al. 2000), all newly diagnosed (within one to three months) ALS patients at the ALS team at the hospitals in Uppsala, Eskilstuna and V€ aster as from July 2009–June 2011 were asked to participate in the study. The patients were given both oral and written information
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about the study, and informed consent was obtained from all participants. The patients should be more than 20 years of age and understand and be able to express themselves in the Swedish language. Patients with hereditary motor neurone disease, severe cognitive deficit, dementia and other fatal diseases were not included in the study.
Data collection A total of 56 patients met the criteria for a diagnosis of definite or probable ALS according to El Escorial criteria (Brooks et al. 2000). Of these, two patients died shortly after the diagnosis and 12 patients were excluded, two due to other fatal diseases (cancer and dementia), eight due to psychological distress and two due to severe symptoms of ALS (terminal stage or respirator treatment). Two patients were excluded due to an administrative failure. Of the remaining 40 patients, seven patients declined participating in the study. A total of 33 patients finally participated in the study. Of these, two patients were included more than four months after diagnosis; they were not included at time point 1 but were included at time point 2. Coping was measured using the MND Coping Scale (Lee et al. 2001) and anxiety and depression using the Hospital Anxiety and Depression Scale (HADS; Zigmond & Snaith 1983). The patients filled out the MND Coping Scale and HADS one to three months and six months after diagnosis, respectively. If they had difficulties in completing the questionnaires, the team nurse from Uppsala helped them. The revised ALS Functional Rating Scale (ALS FRS-R; Cedarbaum et al. 1999) was completed by the team nurse from Uppsala. MND Coping Scale The Motor Neuron Disease Coping Scale (MNDCS) is a validated disease-specific instrument developed to measure coping strategies in people with ALS. It is a 22-item questionnaire divided into six factors: support, two items; positive action, three items; independence, four items; avoidance/venting, three items; information seeking, two items; and positive thinking, two items. In addition, the scale comprised four single items: item 15, ‘I am philosophical about my illness, whatever will be will be’; item 18, ‘I keep my feelings from my friends and family’; item 19, ‘I make use of alternative/complimentary therapies’; and item 20, ‘I take comfort in my spiritual/religious beliefs’. All items are scored on a 6-point Likert scale (1 = never and 6 = always). The instrument is validated and reliability tested (Lee et al. 2001). The questionnaire was translated into Swedish by a translator and tested on eight ALS patients before it was used in the study.
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HAD Scale Hospital Anxiety and Depression (HAD) Scale consists of two subscales: one for anxiety, HADSa, seven items; and one for depression, HADSd, seven items. The scale measures the presence and severity of depression and anxiety during the past week. Subscale scores range from 0 (no distress)–21 (maximum distress). Two cut-off scores have been suggested, 8–10 = doubtful cases and scores of 11 or above = valid cases (Zigmond & Snaith 1983). ALS FRS-R The revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R) is a functional rating scale to measure patients’ physical functions. It consists of 12 questions from which patients’ physical function, breathing, speech and swallowing ability are graded from 0 = total lost– 4 = normal function (Cedarbaum et al. 1999). A lower score indicates more disability.
Data analysis Descriptive statistics were used to describe the demographic and clinical characteristics of the sample. Correlations between HADS, ALS FRS-R and MNDCS were analysed using Spearman’s rho(rs). Differences in coping strategies between gender and between age groups were analysed using Mann–Whitney U test. Wilcoxon signed-rank test was used to analyse whether there were any differences between the two time points. The sample was divided into two groups according to their age, ≤64 and ≥ 65. Significance level was P = 005. P-value was not adjusted for the number of tests. SPSS, version 17, (Chicago, IL, USA) was used for analysis.
Ethical approval Approval for the study was granted by the Regional Ethics Review Board in Uppsala, Sweden (Dnr. 2009/007). Written consent was obtained from all participants.
Results A total of 33 patients were included, 19 men and 14 women. Of these, 2 patients were missed at time point 1 but were included at time point 2. Five patients had died at time point 2. Characteristics of the patients are described in Table 1. The mean score for the ALS FRS-R was 375 (65) at time point 1 and 324 (103) at time point 2. ALS FRS-R did not differ between women and men at the two time points. Patients ≤64 years and patients ≥ 65 years did not © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
Original article
Coping among newly diagnosed ALS patients
Table 1 Patient characteristics
Gender
Age Mean SD (range)
Female (n = 14) Male (n = 19)
585 132 (35–77) 692 101 (54–88)
Onset of disease
Education (years)
Limb
Bulbar
≥9
001 057 003 042 100 070
T1 = one to three months after diagnosis, T2 = six months after diagnosis. Maximum score for each factor: *24, †18, ‡12, §6.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
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B Jakobsson Larsson et al. Table 3 The Hospital Anxiety and Depression Scale HADSa score T1 (n = 31) Total sample Mean SD Range Non case* Doubtful† Case‡ Female Mean SD Range Male Mean SD Range ≤64 years Mean SD Range ≥65 years Mean SD Range
HADSd score T2 (n = 28)
Change (n = 26)
T1 (n = 31)
T2 (n = 28)
Change (n = 26)
65 33 0–13 16 12 3
53 29 1–12 23 3 2
P = 013
47 28 0–11 27 2 2
49 29 0–11 22 4 2
P = 015
73 34 1–13
58 35 1–12
P = 060
46 28 0–11
49 34 0–11
P = 009
58 32 0–11
48 25 1–11
P = 012
48 29 0–11
51 25 2–10
P = 072
627 324 1–11
524 344 1–12
P = 019
373 317 0–11
459 326 0–11
P = 016
669 342 0–13
527 228 2–10
P = 040
556 219 3–11
545 234 3–9
P = 058
T1 = one to three months after diagnosis, T2 = six months after diagnosis. *No case = score 0–7. † Doubtful case = score 8–10. ‡ Cases = score 11–21.
Correlation Time point 1 Positive action correlated positively with ALS FRS-R, which indicates that patients with less physical disability more often used positive action for coping than patients with more reduced physical capacity. Positive action correlated negatively with HADSd, indicating that patients using this strategy report less depression. Independence correlated negatively with both HADSa and HADSd, which indicates that the use of this strategy was related to low emotional distress. Item 15 also correlated negatively with HADSa. Item 18 correlated positively with HADSa, which indicates that instead of confidence in friends and family, patients with symptoms of anxiety more often kept their feeling to themselves (Table 4). Time point 2 Positive thinking correlated negatively with HADSd. Results showed that patients with symptoms of depression used this coping strategy less often than patients without symptoms
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of depression. Item 18 still correlated positively with HADSa at time point 2 (Table 4).
Discussion To our knowledge, this is the first study focused on exploring the variation in different ways of coping in newly diagnosed ALS patients. There is one previous study on newly diagnosed ALS patients and coping where the MND Coping Scale has been used (Hugel et al. 2010). However, in that pilot study with 13 patients, the study focus was on the physician’s ability to identify patients who had difficulty coping with the diagnosis and not on the use of different coping strategies. Hugel et al. (2010) found that patients with symptoms of depression and anxiety had difficulties coping with the diagnosis. We did not investigate patients’ ability to cope, but our results indicate that patients’ coping strategies may be related to psychological well-being. Our results showed that support and independence are the most commonly used strategies and that avoidance/venting and information seeking are seldom used as coping strategies © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
Original article
Coping among newly diagnosed ALS patients
Table 4 Correlation between coping strategies, Hospital Anxiety and depression Scale (HADS) and the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R) HADSa T1 rs Support Positive action Independence Avoidance/venting Information seeking Positive thinking Item 15 Item 18 Item 19 Item 20
0057 0046 0388* 0063 0027 0127 0439* 0509* 0191 0037
HADSd T2 rs 0026 0001 0067 0293 0025 0006 0265 0498* 0189 0163
T1 rs 0327 0668** 0507** 0013 0001 0151 0350 0311 0188 0076
ALS FRS-R T2 rs 0371 0218 0218 0101 0134 0498* 0164 0290 0073 0279
T1 rs 0142 0361* 0300 0117 0062 0245 0006 0084 0066 0190
T2 rs 0318 0357 0095 0092 0328 0018 0027 0102 0288 0074
Spearman’s rho. *P ≤ 005. **P ≤ 001.
among the patients during the first six months after the diagnosis. These results agree with the results of Matuz et al. (2010), but in our study, patients used support more frequently. This difference may be due to the welfare system in Sweden, where most aid and support are free or available at low cost. Perhaps a connection between using support and the experience of being independent explains the two most commonly used strategies among our patients. Most studies on ALS have shown that active coping strategies are commonly used to adapt to the change of life caused by the disease (Earll et al. 1993, Hogg et al. 1994, Young & McNicoll 1998, Hecht et al. 2002, King et al. 2009). It is difficult to compare our results with those of other studies because of the use of many different coping instruments. In our study, information seeking decreased as a coping strategy between the two time points. This differs from the study by Hecht et al. (2002) where the information seeking increased. The difference between these two studies may be that different time points after diagnosis were used. The results in our study also show that the use of item 15, ‘I am philosophical about my illness: Whatever will be will be’, increased at time point 2 and it was frequently used as a coping strategy. This is in line with the result from the work of Hogg et al. (1994) that the patients tended to cope adaptively to their illness. Perhaps this also explains why the patients did not use information seeking for coping as much as expected. Similar to the study by Earll et al. (1993), our patients seldom used alternative treatment. In a large study in Europe with cancer patients, the results showed that one-third of the patients used © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
alternative treatment in the hope of increasing their ability to fight the disease and improving the physical well-being (Molassiotis et al. 2005). Because there is no known cure for ALS and considering the disease’s severity, it might be expected that alternative treatment would be a more often used strategy among ALS patients. Hogg et al. (1994) found no correlation between patients’ physical capacity and coping, in contrast to our study and the study of Lee et al. (2001) where patients with high scores on the ALS FRS-R more often used positive action. In the present study, several correlations were found. However, it is important to note that the design of the study does not allow any causal interpretation; for example, not having confidence in friends and family correlated positively with HADSa, but you cannot know whether this means that the patients with symptoms of anxiety more often kept their feeling to themselves or that keeping feelings to myself leads to more anxiety. Anxiety and depression did not change over time, although women scored higher than men on the HADSa at both time points. Patients aged 65 years or older scored higher on the HADSd at the first time point, and the age groups did not differ at the second time point. Patients with symptoms of anxiety and depression used item 18 (‘I keep my feeling from my friends and family’) more frequently than patients without psychological symptoms. Sometimes patients try to protect their family by not confiding in them. Moreover, this may be a way for the patients to protect themselves by avoiding talking about their feeling. It seems that patients with symptoms of anxiety and depression used less active and positive coping strategies. Lee et al. (2001)
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found that avoidance/venting correlated positively with high levels of anxiety (Lee et al. 2001). Matuz et al. (2010) have used the MNSCS, but they have not reported the results of the items that were not included in six factors. Those data would have been interesting for us because item 15 was commonly used among our patients. One strength in our study is that data were measured prospectively and that we included all newly diagnosed patients who met the inclusion criteria and who accepted to participate in the study. Another strength is the few dropouts between the two time points despite the severity of the disease. One limitation is the small sample size. Another limitation is that patients with difficulties completing the questionnaires got help from the research nurse, which may have influenced the result. Some patients were excluded due to their psychological status and some patients declined participation in the study because of their psychological distress. These exclusions may have affected the results and should be taken into consideration. The significance of the results must also be considered due to the problems inherent in multiple comparisons. Because of this, we focused on the presence, correlation and change over time instead of significance when we present the results. The knowledge of different coping strategies used and that these strategies change over time is valuable for the nursing staff in their support of the patients.
Conclusion Support and independence were the most used coping strategies and avoidance/venting and information seeking were the least used coping strategies in our newly diagnosed ALS patients. The uses of support, which probably involve different aids, seem to help the patients to be independent and to cope with the disease. The result also showed that the patients used different coping strategies over time and that psychological well-being was correlated with different coping strategies even in newly diagnosed ALS patients.
Relevance to clinical practice Even though we do not know whether it is the coping strategy that has an impact on the psychological well-being or whether it is the other way around, it is important to be aware of this correlation. With knowledge about different coping strategies patients use, that the patients use different coping strategies over time and that there are correlations between different coping strategies and psychological wellbeing, the support and care can be developed and improved to better meet the patients’ needs.
Acknowledgements We thank the patients who participated in this study. We would also like to thank statistician Marcus Thuresson for support with the statistical analyses.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/eth ical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Funding This study was financially supported by the UlricaCrone Foundation, Uppsala University and Uppsala University Hospital.
Conflict of interest None.
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Psychopathology in amyotrophic lateral sclerosis: a preliminary study with 27 ALS patients. Amyotroph Lateral Sclerosis and Other Motor Neuron Disorders 6, 221–225. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B & Nakanishi A (1999) The ALSFRS-R: a revised ALS functional rating scale that incor-
porates assessments of respiratory function. BDNF ALS Study Group (Phase III). Journal of the Neurological Sciences 169, 13–21. Earll L, Johnston M & Mitchell E (1993) Coping with motor neurone disease– an analysis using self-regulation theory. Palliative Medicine, 7(4 Suppl), 21–30.
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Original article Gallagher D & Monroe B (2006) Psychological care. In Palliative Care in Amyotrophic Lateral Sclerosis: From Diagnosis to Bereavement, 2nd edn (Oliver D, Borasio G & Walsh D eds). Oxford: Oxford University Press, pp. 143–168. Ganzini L, Johnston WS & Silveira MJ (2002) The final month of life in patients with ALS. Neurology 59, 428–431. Hecht M, Hillemacher T, Grasel E, Tigges S, Winterholler M, Heuss D, Hilz MJ & Neundorfer B (2002) Subjective experience and coping in ALS. Amyotroph Lateral Sclerosis and Other Motor Neuron Disorders 3, 225–231. Hogg KE, Goldstein LH & Leigh PN (1994) The psychological impact of motor neurone disease. Psychological Medicine 24, 625–632. Hugel H, Pih N, Dougan CP, Rigby S & Young CA (2010) Identifying poor adaptation to a new diagnosis of motor neuron disease: a pilot study into the value of an early patient-led interview. Amyotroph Lateral Sclerosis 11, 104–109. King SJ, Duke MM & O’Connor BA (2009) Living with amyotrophic lateral sclero-
Coping among newly diagnosed ALS patients sis/motor neurone disease (ALS/MND): decision-making about ‘ongoing change and adaptation’. Journal of Clinical Nursing 18, 745–754. Lazarus RS (1985) The psychology of stress and coping. Issues Mental Health Nursing 7, 399–418. Lee JN, Rigby SA, Burchardt F, Thornton EW, Dougan C & Young CA (2001) Quality of life issues in motor neurone disease: the development and validation of a coping strategies questionnaire, the MND Coping Scale. Journal of the Neurological Sciences 191, 79– 85. Matuz T, Birbaumer N, Hautzinger M & Kubler A (2010) Coping with amyotrophic lateral sclerosis: an integrative view. Journal of Neurology Neurosurgery & Psychiatry 81, 893–898. Molassiotis A, Fernadez-Ortega P, Pud D, Ozden G, Scott JA, Panteli V, Margulies A, Browall M, Magri M, Selvekerova S, Madsen E, Milovics L, Bruyns I, Gudmundsdottir G, Hummerston S, Ahmad AM, Platin N, Kearney N & Patiraki E (2005) Use of complementary and alternative medicine in cancer patients: a European survey. Annals of Oncology 16, 655–663.
Montel S, Albertini L & Spitz E (2012) Coping strategies in relation to quality of life in amyotrophic lateral sclerosis. Muscle and Nerve 45, 131– 134. Musaro A (2012) Understanding ALS: new therapeutic approaches. Federation of European Biochemical Societies Journal 280, 4315–4322. Nelson ND, Trail M, Van JN, Appel SH & Lai EC (2003) Quality of life in patients with amyotrophic lateral sclerosis: perceptions, coping resources, and illness characteristics. Journal of Palliative Medicine 6, 417–424. Sarafino EP (1994) Health Psychology, Biopsychosocial Interactions, 2nd edn. Wiley, New York, NY, p. 139. Wijesekera LC & Leigh PN (2009) Amyotrophic lateral sclerosis. Orphanet Journal of Rare Diseases 4, 3. Young JM & McNicoll P (1998) Against all odds: positive life experiences of people with advanced amyotrophic lateral sclerosis. Health & Social Work 23, 35–43. Zigmond AS & Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67, 361–370.
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© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
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Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis Birgitta Jakobsson Larsson, Karin Nordin, H akan Askmark and Ingela Nygren
Aims and objectives. To prospectively identify different coping strategies among newly diagnosed amyotrophic lateral sclerosis patients and whether they change over time and to determine whether physical function, psychological well-being, age and gender correlated with the use of different coping strategies. Background. Amyotrophic lateral sclerosis is a fatal disease with impact on both physical function and psychological well-being. Different coping strategies are used to manage symptoms and disease progression, but knowledge about coping in newly diagnosed amyotrophic lateral sclerosis patients is scarce. Design. This was a prospective study with a longitudinal and descriptive design. Methods. A total of 33 patients were included and evaluation was made at two time points, one to three months and six months after diagnosis. Patients were asked to complete the Motor Neuron Disease Coping Scale and the Hospital Anxiety and Depression Scale. Physical function was estimated using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale. Results. The most commonly used strategies were support and independence. Avoidance/venting and information seeking were seldom used at both time points. The use of information seeking decreased between the two time points. Men did not differ from women, but patients ≤64 years used positive action more often than older patients. Amyotrophic Lateral Sclerosis Functional Rating Scale was positively correlated with positive action at time point 1, but not at time point 2. Patients’ psychological well-being was correlated with the use of different coping strategies. Conclusions. Support and independence were the most used coping strategies, and the use of different strategies changed over time. Psychological well-being was correlated with different coping strategies in newly diagnosed amyotrophic lateral sclerosis patients. Relevance to clinical practice. The knowledge about coping strategies in early stage of the disease may help the nurses to improve and develop the care and support for these patients.
Authors: Birgitta Jakobsson Larsson, PhD Student, RN, Registered Nurse, Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala; Karin Nordin, PhD, Licenced Psychologist, Department of Public Health and Caring Science, University of Uppsala, Uppsala, Sweden and Department of Global Health and Primary Care, University of Bergen, Norway; H akan Askmark, PhD, MD, Neurologist and Professor, Department of Neuroscience,
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What does this paper contribute to the wider global clinical community?
• The choice of coping strategies • •
changes during the disease progression. The use of coping strategies correlates with psychological wellbeing. Knowledge about variation in the use of coping strategies is important in the clinical settings to be able to support the patient over time.
Neurology, Uppsala University Hospital, Uppsala; Ingela Nygren, PhD, MD, Neurologist, Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala, Sweden Correspondence: Birgitta Jakobsson Larsson, Registered Nurse, Department of Neuroscience, Neurology, Uppsala University Hospital, S 751 85 Uppsala, Sweden. Telephone: +46 18 6112875. E-mail: [email protected]
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155, doi: 10.1111/jocn.12557
Original article
Coping among newly diagnosed ALS patients
Key words: amyotrophic lateral sclerosis, coping, emotional well-being, motor neuron disease Accepted for publication: 18 December 2013
Introduction Amyotrophic lateral sclerosis (ALS) is a fatal disease, with impact on both physical function and psychological wellbeing of the patients. Even though coping with ALS has been investigated, there is a lack of knowledge in coping among newly diagnosed ALS patients. This knowledge is important for the healthcare personnel who provide care and treat recently diagnosed patients.
Background Amyotrophic lateral sclerosis is a neurodegenerative disorder with no known cure, in which the motor neurones responsible for controlling voluntary muscles are affected. The patients gradually develop muscle atrophy and weakness. Most often, the disease starts with weakness in one arm or leg, that is, ‘limb onset’, but the disease can also start with speech and/or swallowing difficulties, that is, ‘bulbar onset’. The disease often starts at 55–70 years of age, and most of the patients are dead three to five years after the start of symptoms. The most common cause of death is respiratory failure (Wijesekera & Leigh 2009, Musaro 2012). During the disease, the patient has to face different changes that affect him or her both physically and socially, and the symptoms may lead to dependence on others and change in lifestyle (Ganzini et al. 2002). Coping can be described as ‘the process by which people try to manage the perceived discrepancy between the demands and the resources they appraise in a stressful situation’ (Sarafino 1994). A distinction can be made between problem-focused coping, that is, ‘aims at modifying the source of stressor’, and emotion-focused coping, that is, ‘aims at reducing or managing the emotional stress that is associated with the situation’ (Lazarus 1985). ALS is a progressive disorder, and the patients will probably require different coping strategies at different stages of the disease (Gallagher & Monroe 2006). Bungener et al. (2005) found that younger ALS patients often use problem-focused strategies, whereas older patients often use emotion-focused strategies to cope with the disease. Recently diagnosed patients (less than six months) preferred emotion-focused coping strategies. Optimism, flexibility and humour are found to be important
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
strategies that many ALS patients use to cope with their situation. Moreover, spirituality and religious practice such as prayer, meditation and belief in God are important sources of support in coping with ALS (Nelson et al. 2003). Montel et al. (2012) found that the most common strategy was acceptance. They also found that to cope with the disease, ALS patients used religion more often than the general population and women tended to look for emotional support more often than men. Hugel et al. (2010) found that 31% of the patients were ‘non-copers’ and that the patients in this group were younger and reported significantly more anxiety and depression than copers. Knowledge about coping in newly diagnosed ALS patients is scarce. To our knowledge, only one prospective study (Hugel et al. 2010) with newly diagnosed ALS patients over time has been conducted, in which a scale validated for ALS [the Motor Neuron Disease (MND) Coping Scale] has been used. On the whole, few studies on ALS and coping have been reported, and to our knowledge, there is no study on newly diagnosed ALS and coping carried out in Scandinavia. The aim of the study was to prospectively identify what coping strategies ALS patients use and whether their coping strategies changed from diagnosis to six months after diagnosis. We also wanted to determine how much anxiety and depression the patients reported. An additional aim was to investigate coping on the one hand and emotional distress and physical function on the other and to determine whether there were differences between women and men and between patients aged ≤64 and ≥65 with respect to coping strategies used.
Methods Design This was a prospective study with a longitudinal and descriptive design with a quantitative approach. Questionnaires were used for data collection. According to El Escorial criteria (Brooks et al. 2000), all newly diagnosed (within one to three months) ALS patients at the ALS team at the hospitals in Uppsala, Eskilstuna and V€ aster as from July 2009–June 2011 were asked to participate in the study. The patients were given both oral and written information
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about the study, and informed consent was obtained from all participants. The patients should be more than 20 years of age and understand and be able to express themselves in the Swedish language. Patients with hereditary motor neurone disease, severe cognitive deficit, dementia and other fatal diseases were not included in the study.
Data collection A total of 56 patients met the criteria for a diagnosis of definite or probable ALS according to El Escorial criteria (Brooks et al. 2000). Of these, two patients died shortly after the diagnosis and 12 patients were excluded, two due to other fatal diseases (cancer and dementia), eight due to psychological distress and two due to severe symptoms of ALS (terminal stage or respirator treatment). Two patients were excluded due to an administrative failure. Of the remaining 40 patients, seven patients declined participating in the study. A total of 33 patients finally participated in the study. Of these, two patients were included more than four months after diagnosis; they were not included at time point 1 but were included at time point 2. Coping was measured using the MND Coping Scale (Lee et al. 2001) and anxiety and depression using the Hospital Anxiety and Depression Scale (HADS; Zigmond & Snaith 1983). The patients filled out the MND Coping Scale and HADS one to three months and six months after diagnosis, respectively. If they had difficulties in completing the questionnaires, the team nurse from Uppsala helped them. The revised ALS Functional Rating Scale (ALS FRS-R; Cedarbaum et al. 1999) was completed by the team nurse from Uppsala. MND Coping Scale The Motor Neuron Disease Coping Scale (MNDCS) is a validated disease-specific instrument developed to measure coping strategies in people with ALS. It is a 22-item questionnaire divided into six factors: support, two items; positive action, three items; independence, four items; avoidance/venting, three items; information seeking, two items; and positive thinking, two items. In addition, the scale comprised four single items: item 15, ‘I am philosophical about my illness, whatever will be will be’; item 18, ‘I keep my feelings from my friends and family’; item 19, ‘I make use of alternative/complimentary therapies’; and item 20, ‘I take comfort in my spiritual/religious beliefs’. All items are scored on a 6-point Likert scale (1 = never and 6 = always). The instrument is validated and reliability tested (Lee et al. 2001). The questionnaire was translated into Swedish by a translator and tested on eight ALS patients before it was used in the study.
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HAD Scale Hospital Anxiety and Depression (HAD) Scale consists of two subscales: one for anxiety, HADSa, seven items; and one for depression, HADSd, seven items. The scale measures the presence and severity of depression and anxiety during the past week. Subscale scores range from 0 (no distress)–21 (maximum distress). Two cut-off scores have been suggested, 8–10 = doubtful cases and scores of 11 or above = valid cases (Zigmond & Snaith 1983). ALS FRS-R The revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R) is a functional rating scale to measure patients’ physical functions. It consists of 12 questions from which patients’ physical function, breathing, speech and swallowing ability are graded from 0 = total lost– 4 = normal function (Cedarbaum et al. 1999). A lower score indicates more disability.
Data analysis Descriptive statistics were used to describe the demographic and clinical characteristics of the sample. Correlations between HADS, ALS FRS-R and MNDCS were analysed using Spearman’s rho(rs). Differences in coping strategies between gender and between age groups were analysed using Mann–Whitney U test. Wilcoxon signed-rank test was used to analyse whether there were any differences between the two time points. The sample was divided into two groups according to their age, ≤64 and ≥ 65. Significance level was P = 005. P-value was not adjusted for the number of tests. SPSS, version 17, (Chicago, IL, USA) was used for analysis.
Ethical approval Approval for the study was granted by the Regional Ethics Review Board in Uppsala, Sweden (Dnr. 2009/007). Written consent was obtained from all participants.
Results A total of 33 patients were included, 19 men and 14 women. Of these, 2 patients were missed at time point 1 but were included at time point 2. Five patients had died at time point 2. Characteristics of the patients are described in Table 1. The mean score for the ALS FRS-R was 375 (65) at time point 1 and 324 (103) at time point 2. ALS FRS-R did not differ between women and men at the two time points. Patients ≤64 years and patients ≥ 65 years did not © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
Original article
Coping among newly diagnosed ALS patients
Table 1 Patient characteristics
Gender
Age Mean SD (range)
Female (n = 14) Male (n = 19)
585 132 (35–77) 692 101 (54–88)
Onset of disease
Education (years)
Limb
Bulbar
≥9
001 057 003 042 100 070
T1 = one to three months after diagnosis, T2 = six months after diagnosis. Maximum score for each factor: *24, †18, ‡12, §6.
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B Jakobsson Larsson et al. Table 3 The Hospital Anxiety and Depression Scale HADSa score T1 (n = 31) Total sample Mean SD Range Non case* Doubtful† Case‡ Female Mean SD Range Male Mean SD Range ≤64 years Mean SD Range ≥65 years Mean SD Range
HADSd score T2 (n = 28)
Change (n = 26)
T1 (n = 31)
T2 (n = 28)
Change (n = 26)
65 33 0–13 16 12 3
53 29 1–12 23 3 2
P = 013
47 28 0–11 27 2 2
49 29 0–11 22 4 2
P = 015
73 34 1–13
58 35 1–12
P = 060
46 28 0–11
49 34 0–11
P = 009
58 32 0–11
48 25 1–11
P = 012
48 29 0–11
51 25 2–10
P = 072
627 324 1–11
524 344 1–12
P = 019
373 317 0–11
459 326 0–11
P = 016
669 342 0–13
527 228 2–10
P = 040
556 219 3–11
545 234 3–9
P = 058
T1 = one to three months after diagnosis, T2 = six months after diagnosis. *No case = score 0–7. † Doubtful case = score 8–10. ‡ Cases = score 11–21.
Correlation Time point 1 Positive action correlated positively with ALS FRS-R, which indicates that patients with less physical disability more often used positive action for coping than patients with more reduced physical capacity. Positive action correlated negatively with HADSd, indicating that patients using this strategy report less depression. Independence correlated negatively with both HADSa and HADSd, which indicates that the use of this strategy was related to low emotional distress. Item 15 also correlated negatively with HADSa. Item 18 correlated positively with HADSa, which indicates that instead of confidence in friends and family, patients with symptoms of anxiety more often kept their feeling to themselves (Table 4). Time point 2 Positive thinking correlated negatively with HADSd. Results showed that patients with symptoms of depression used this coping strategy less often than patients without symptoms
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of depression. Item 18 still correlated positively with HADSa at time point 2 (Table 4).
Discussion To our knowledge, this is the first study focused on exploring the variation in different ways of coping in newly diagnosed ALS patients. There is one previous study on newly diagnosed ALS patients and coping where the MND Coping Scale has been used (Hugel et al. 2010). However, in that pilot study with 13 patients, the study focus was on the physician’s ability to identify patients who had difficulty coping with the diagnosis and not on the use of different coping strategies. Hugel et al. (2010) found that patients with symptoms of depression and anxiety had difficulties coping with the diagnosis. We did not investigate patients’ ability to cope, but our results indicate that patients’ coping strategies may be related to psychological well-being. Our results showed that support and independence are the most commonly used strategies and that avoidance/venting and information seeking are seldom used as coping strategies © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
Original article
Coping among newly diagnosed ALS patients
Table 4 Correlation between coping strategies, Hospital Anxiety and depression Scale (HADS) and the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R) HADSa T1 rs Support Positive action Independence Avoidance/venting Information seeking Positive thinking Item 15 Item 18 Item 19 Item 20
0057 0046 0388* 0063 0027 0127 0439* 0509* 0191 0037
HADSd T2 rs 0026 0001 0067 0293 0025 0006 0265 0498* 0189 0163
T1 rs 0327 0668** 0507** 0013 0001 0151 0350 0311 0188 0076
ALS FRS-R T2 rs 0371 0218 0218 0101 0134 0498* 0164 0290 0073 0279
T1 rs 0142 0361* 0300 0117 0062 0245 0006 0084 0066 0190
T2 rs 0318 0357 0095 0092 0328 0018 0027 0102 0288 0074
Spearman’s rho. *P ≤ 005. **P ≤ 001.
among the patients during the first six months after the diagnosis. These results agree with the results of Matuz et al. (2010), but in our study, patients used support more frequently. This difference may be due to the welfare system in Sweden, where most aid and support are free or available at low cost. Perhaps a connection between using support and the experience of being independent explains the two most commonly used strategies among our patients. Most studies on ALS have shown that active coping strategies are commonly used to adapt to the change of life caused by the disease (Earll et al. 1993, Hogg et al. 1994, Young & McNicoll 1998, Hecht et al. 2002, King et al. 2009). It is difficult to compare our results with those of other studies because of the use of many different coping instruments. In our study, information seeking decreased as a coping strategy between the two time points. This differs from the study by Hecht et al. (2002) where the information seeking increased. The difference between these two studies may be that different time points after diagnosis were used. The results in our study also show that the use of item 15, ‘I am philosophical about my illness: Whatever will be will be’, increased at time point 2 and it was frequently used as a coping strategy. This is in line with the result from the work of Hogg et al. (1994) that the patients tended to cope adaptively to their illness. Perhaps this also explains why the patients did not use information seeking for coping as much as expected. Similar to the study by Earll et al. (1993), our patients seldom used alternative treatment. In a large study in Europe with cancer patients, the results showed that one-third of the patients used © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3148–3155
alternative treatment in the hope of increasing their ability to fight the disease and improving the physical well-being (Molassiotis et al. 2005). Because there is no known cure for ALS and considering the disease’s severity, it might be expected that alternative treatment would be a more often used strategy among ALS patients. Hogg et al. (1994) found no correlation between patients’ physical capacity and coping, in contrast to our study and the study of Lee et al. (2001) where patients with high scores on the ALS FRS-R more often used positive action. In the present study, several correlations were found. However, it is important to note that the design of the study does not allow any causal interpretation; for example, not having confidence in friends and family correlated positively with HADSa, but you cannot know whether this means that the patients with symptoms of anxiety more often kept their feeling to themselves or that keeping feelings to myself leads to more anxiety. Anxiety and depression did not change over time, although women scored higher than men on the HADSa at both time points. Patients aged 65 years or older scored higher on the HADSd at the first time point, and the age groups did not differ at the second time point. Patients with symptoms of anxiety and depression used item 18 (‘I keep my feeling from my friends and family’) more frequently than patients without psychological symptoms. Sometimes patients try to protect their family by not confiding in them. Moreover, this may be a way for the patients to protect themselves by avoiding talking about their feeling. It seems that patients with symptoms of anxiety and depression used less active and positive coping strategies. Lee et al. (2001)
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found that avoidance/venting correlated positively with high levels of anxiety (Lee et al. 2001). Matuz et al. (2010) have used the MNSCS, but they have not reported the results of the items that were not included in six factors. Those data would have been interesting for us because item 15 was commonly used among our patients. One strength in our study is that data were measured prospectively and that we included all newly diagnosed patients who met the inclusion criteria and who accepted to participate in the study. Another strength is the few dropouts between the two time points despite the severity of the disease. One limitation is the small sample size. Another limitation is that patients with difficulties completing the questionnaires got help from the research nurse, which may have influenced the result. Some patients were excluded due to their psychological status and some patients declined participation in the study because of their psychological distress. These exclusions may have affected the results and should be taken into consideration. The significance of the results must also be considered due to the problems inherent in multiple comparisons. Because of this, we focused on the presence, correlation and change over time instead of significance when we present the results. The knowledge of different coping strategies used and that these strategies change over time is valuable for the nursing staff in their support of the patients.
Conclusion Support and independence were the most used coping strategies and avoidance/venting and information seeking were the least used coping strategies in our newly diagnosed ALS patients. The uses of support, which probably involve different aids, seem to help the patients to be independent and to cope with the disease. The result also showed that the patients used different coping strategies over time and that psychological well-being was correlated with different coping strategies even in newly diagnosed ALS patients.
Relevance to clinical practice Even though we do not know whether it is the coping strategy that has an impact on the psychological well-being or whether it is the other way around, it is important to be aware of this correlation. With knowledge about different coping strategies patients use, that the patients use different coping strategies over time and that there are correlations between different coping strategies and psychological wellbeing, the support and care can be developed and improved to better meet the patients’ needs.
Acknowledgements We thank the patients who participated in this study. We would also like to thank statistician Marcus Thuresson for support with the statistical analyses.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/eth ical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Funding This study was financially supported by the UlricaCrone Foundation, Uppsala University and Uppsala University Hospital.
Conflict of interest None.
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