Living with chronic headache
Ciere, Yvette
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Ciere, Y. (2018). Living with chronic headache: A personal goal and self-regulation perspective. University of Groningen.
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Positive and negative affect after colorectal cancer diagnosis
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General discussion
7
Peter
Peter sought help at a multidisciplinary headache centre, where he was advised to take sick leave to recover. During the past months, Peter’s most important goal was to become well again. He is gaining insight into triggers of his headaches, is learning to say no, and is looking for a different job in which he has more opportunity to take regular breaks. He now realizes that his strategy to just keep on going eventually backfired. He is confident that by giving his headaches more space, he will be able to become a cheerful and energetic father again.
Helen
Helen has been doing well lately. In fact, she had so much energy left that she decided to take up a home study course next to her job. As the course is flexible in hours, this was just the right activity for her. Helen really enjoys studying and she has passed the first exams, so now she is determined to complete the first year. Sometimes, she even takes extra Triptans to be able to study, even though she is very conscious about her medication use. Yet, she will not let her headaches get in the way of reaching this goal!
The cases of Peter and Helen exemplify the large impact of chronic headache on daily life and well-being. The nature and magnitude of this impact is different for everyone, as each individual pursues a unique set of personal goals. The cases also illustrate how someone suffering from chronic headaches may maintain or regain well-being, by adjusting his or her personal goals. Greater insight into how chronic headache affects goal pursuit, and into how people manage their goals in the context of chronic headache, may help to understand how headache treatment can be further tailored to an individual’s needs and preferences. It could also help to identify processes underlying improvements in well-being in a chronic headache patient.
The aim of this thesis was therefore to investigate the impact of chronic headache, and how people adjust to chronic headache, by studying personal goals. Different but
complementary research methods were used to address these aims from various perspectives; from a daily process to a more global perspective, and from both a quantitative and qualitative perspective. Three issues were addressed: (1) The impact of headache symptoms on mood, and vice versa (Chapter 2), (2) the impact of headache symptoms on the appraisal of personal goals, and the extent to which the appraisal of goal disturbance explains individual differences in mood (Chapter 3, 4, and 6), and (3) the way in which people manage their goals in the context of chronic headache and how this may protect against the impact of headache on mood (Chapter 5 and 6).
This chapter starts with a discussion of the theoretical implications of our main findings regarding these three issues, followed by a discussion of methodological considerations, directions for future research and implications for clinical practice.
THEORETICAL IMPLICATIONS Chronic headache symptoms and mood
The first issue addressed in this thesis concerned the within-person associations between changes in headache symptoms and changes in mood (see Figure 1a).
Figure 1a – Issue 1: impact of headache symptoms on mood.
Although the association between chronic migraine and mood disorders is well-established (Buse, Silberstein, Manack, Papapetropoulos, & Lipton, 2013), there is limited insight into how headache symptoms and mood influence each other over time. We therefore conducted an experience sampling study which gave insight into the within-person, moment-to-moment associations between headache and mood in patients with chronic migraine (Chapter 2). We found that an increase in pain intensity at one moment in time predicted an increase in negative affect at the next moment, but not the other way around. This could suggest that reducing pain intensity may have a beneficial effect on mood, but not vice versa. Three earlier studies however did find evidence for a reciprocal relationship between pain and depression in patients with other chronic pain conditions (Husted, Tom, Farewell, & Gladman, 2012; Kroenke et al., 2011; Lewandowski Holley et al., 2013). A possible explanation for these diverging findings could be that it may take more time for negative affect to have an impact on pain intensity, as earlier studies included a longer time frame (e.g., 12 months). Another explanation could be that we controlled for the influence of positive affect, while earlier studies did not. It could be that a lack of positive affect does have a more immediate impact on pain intensity. This hypothesis deserves investigation in further research.
Importantly, we found that the moment-to-moment associations between pain and negative affect were weaker when patients reported higher positive affect at the moment of pain, which corresponds with earlier findings in fibromyalgia and arthritis (Strand et al., 2006; Zautra, Johnson, & Davis, 2005; Zautra, Smith, Affleck, & Tennen, 2001). Together, these findings support the proposition of the Dynamic Model of Affect that positive and negative affect become more interdependent during stressful circumstances (e.g., a
Peter
Peter sought help at a multidisciplinary headache centre, where he was advised to take sick leave to recover. During the past months, Peter’s most important goal was to become well again. He is gaining insight into triggers of his headaches, is learning to say no, and is looking for a different job in which he has more opportunity to take regular breaks. He now realizes that his strategy to just keep on going eventually backfired. He is confident that by giving his headaches more space, he will be able to become a cheerful and energetic father again.
Helen
Helen has been doing well lately. In fact, she had so much energy left that she decided to take up a home study course next to her job. As the course is flexible in hours, this was just the right activity for her. Helen really enjoys studying and she has passed the first exams, so now she is determined to complete the first year. Sometimes, she even takes extra Triptans to be able to study, even though she is very conscious about her medication use. Yet, she will not let her headaches get in the way of reaching this goal!
The cases of Peter and Helen exemplify the large impact of chronic headache on daily life and well-being. The nature and magnitude of this impact is different for everyone, as each individual pursues a unique set of personal goals. The cases also illustrate how someone suffering from chronic headaches may maintain or regain well-being, by adjusting his or her personal goals. Greater insight into how chronic headache affects goal pursuit, and into how people manage their goals in the context of chronic headache, may help to understand how headache treatment can be further tailored to an individual’s needs and preferences. It could also help to identify processes underlying improvements in well-being in a chronic headache patient.
The aim of this thesis was therefore to investigate the impact of chronic headache, and how people adjust to chronic headache, by studying personal goals. Different but
complementary research methods were used to address these aims from various perspectives; from a daily process to a more global perspective, and from both a quantitative and qualitative perspective. Three issues were addressed: (1) The impact of headache symptoms on mood, and vice versa (Chapter 2), (2) the impact of headache symptoms on the appraisal of personal goals, and the extent to which the appraisal of goal disturbance explains individual differences in mood (Chapter 3, 4, and 6), and (3) the way in which people manage their goals in the context of chronic headache and how this may protect against the impact of headache on mood (Chapter 5 and 6).
This chapter starts with a discussion of the theoretical implications of our main findings regarding these three issues, followed by a discussion of methodological considerations, directions for future research and implications for clinical practice.
THEORETICAL IMPLICATIONS Chronic headache symptoms and mood
The first issue addressed in this thesis concerned the within-person associations between changes in headache symptoms and changes in mood (see Figure 1a).
Figure 1a – Issue 1: impact of headache symptoms on mood.
Although the association between chronic migraine and mood disorders is well-established (Buse, Silberstein, Manack, Papapetropoulos, & Lipton, 2013), there is limited insight into how headache symptoms and mood influence each other over time. We therefore conducted an experience sampling study which gave insight into the within-person, moment-to-moment associations between headache and mood in patients with chronic migraine (Chapter 2). We found that an increase in pain intensity at one moment in time predicted an increase in negative affect at the next moment, but not the other way around. This could suggest that reducing pain intensity may have a beneficial effect on mood, but not vice versa. Three earlier studies however did find evidence for a reciprocal relationship between pain and depression in patients with other chronic pain conditions (Husted, Tom, Farewell, & Gladman, 2012; Kroenke et al., 2011; Lewandowski Holley et al., 2013). A possible explanation for these diverging findings could be that it may take more time for negative affect to have an impact on pain intensity, as earlier studies included a longer time frame (e.g., 12 months). Another explanation could be that we controlled for the influence of positive affect, while earlier studies did not. It could be that a lack of positive affect does have a more immediate impact on pain intensity. This hypothesis deserves investigation in further research.
Importantly, we found that the moment-to-moment associations between pain and negative affect were weaker when patients reported higher positive affect at the moment of pain, which corresponds with earlier findings in fibromyalgia and arthritis (Strand et al., 2006; Zautra, Johnson, & Davis, 2005; Zautra, Smith, Affleck, & Tennen, 2001). Together, these findings support the proposition of the Dynamic Model of Affect that positive and negative affect become more interdependent during stressful circumstances (e.g., a
headache attack), and that high positive affect could therefore buffer negative affect (Zautra, Potter, & Reich, 1997). However, we also found support for a complementary role of positive affect. That is, average (i.e., ‘trait’) positive affect was found to moderate the time-lagged (but not the concurrent) associations between pain intensity and negative affect. This finding provides tentative support for the Broaden-and-Build theory
(Fredrickson, 2004a) which suggests that positive affect broadens attention and therefore promotes the building of resources (e.g., skills, social support, optimism) that help people cope more effectively with stress (Fredrickson & Branigan, 2005). Of note, our
longitudinal study in colorectal cancer patients showed that positive affect may be reduced in the context of illness (Chapter 6). Similarly, a study in episodic migraine showed that patients with higher headache frequency reported lower positive affect as compared to healthy controls and patients with lower headache frequency (Louter et al., 2015). This suggests that although positive affect is an important resource in coping with chronic headache, it may also be more difficult to acquire and preserve in the presence of frequent headache.
Thus, increases in pain intensity appear to elicit or exacerbate negative affect in patients with chronic migraine, but less so in the presence of higher positive affect. In addition to pain intensity, positive affect therefore seems a promising target for interventions aiming to reduce negative affect in the context of chronic migraine.
Chronic headache symptoms, goal disturbance and mood
The second question addressed in this thesis concerned the relationship between chronic headache symptoms, the perceived disturbance of personal goals, (i.e., the appraisal of headache related goal hindrance and reduced goal attainability) and mood (see Figure 1b).
Figure 1b – Issue 2: associations between chronic headache symptoms,
goal disturbance, and mood.
First, we conducted an experience sampling study to gain insight into how pain intensity, a lack of energy, and negative affect influenced the appraisal of daily activities in the context of chronic migraine (Chapter 3). We found that patients experienced more hindrance in daily activities when pain intensity and negative affect at the previous moment were higher, and energy was lower, with pain intensity being the strongest predictor of activity hindrance. Notably, the relationship between pain intensity, negative affect, and energy was reciprocal. This could implicate that migraine pain does not only interrupt the engagement in activities, but can also drain resources that are needed for such activities (Affleck, Urrows, Tennen, Higgins, & Abeles, 1996; Hardy, Crofford, & Segerstrom, 2011). As research in adolescents with episodic headache suggested that the daily interference of headache may culminate in the disturbance of personal goals (Massey, Garnefski, & Gebhardt, 2009), Chapter 4 conducted a first exploration of the relationship between headache symptom severity and personal goal appraisals in adults. More frequent headache was associated with lower perceived attainability of personal goals (not
specifically due to headache), while more intense headache was associated with higher headache-related goal hindrance, which is in line with earlier studies showing that goal pursuit is appraised more negatively in the context of more severe pain (Affleck et al., 2001; Karoly & Ruehlman, 1996; Karoly, Okun, Enders, & Tennen, 2014). A notable finding was that achievement goals (e.g., be successful in work) were rated as most hindered, but at the same time as most attainable.As working can be an important way of achieving independence, developing oneself, being connected to others, or contributing to society (Rosso, Dekas, & Wrzesniewski, 2010), it could be that people use strategies to keep work goals attainable despite the high interference of headache. For further discussion of this issue, see next section.
Although it can be expected that chronic headache impacts on goal pursuit, we found that there was considerable variation in how people appraised this impact. In accordance with stress-coping theory (Maes, Leventhal, & de Ridder, 1996), variation in the appraisal of goal disturbance accounted for individual differences in mood. In a sample of headache clinic patients, greater headache-related goal hindrance was associated with lower positive affect, and lower goal attainability with higher negative affect, even when controlling for headache severity (Chapter 4). In a different sample of patients with colorectal cancer, we further found that the appraisal of cancer-related goal hindrance continued to explain individual differences in positive and negative affect over a period of 18 months (Chapter
6). These findings are in line with evidence in a range of other chronic somatic conditions
(e.g., (Boersma, Maes, & van Elderen, 2005; Janse, Sprangers, Ranchor, & Fleer, 2015; Offerman, Schroevers, van der Velden, de Boer, & Pruyn, 2010; Vroman, Chamberlain, & Warner, 2009) and underscore the importance of the perception of successful goal pursuit for mood. A common finding across our two samples was that the appraisal of goal disturbance affected both positive and negative affect, which is in line with Control Theory (Carver & Scheier, 1982; Carver & Scheier, 2001). Thus, the interference of illness with goal pursuit may not only increase the risk of experiencing negative emotions (e.g.,
headache attack), and that high positive affect could therefore buffer negative affect (Zautra, Potter, & Reich, 1997). However, we also found support for a complementary role of positive affect. That is, average (i.e., ‘trait’) positive affect was found to moderate the time-lagged (but not the concurrent) associations between pain intensity and negative affect. This finding provides tentative support for the Broaden-and-Build theory
(Fredrickson, 2004a) which suggests that positive affect broadens attention and therefore promotes the building of resources (e.g., skills, social support, optimism) that help people cope more effectively with stress (Fredrickson & Branigan, 2005). Of note, our
longitudinal study in colorectal cancer patients showed that positive affect may be reduced in the context of illness (Chapter 6). Similarly, a study in episodic migraine showed that patients with higher headache frequency reported lower positive affect as compared to healthy controls and patients with lower headache frequency (Louter et al., 2015). This suggests that although positive affect is an important resource in coping with chronic headache, it may also be more difficult to acquire and preserve in the presence of frequent headache.
Thus, increases in pain intensity appear to elicit or exacerbate negative affect in patients with chronic migraine, but less so in the presence of higher positive affect. In addition to pain intensity, positive affect therefore seems a promising target for interventions aiming to reduce negative affect in the context of chronic migraine.
Chronic headache symptoms, goal disturbance and mood
The second question addressed in this thesis concerned the relationship between chronic headache symptoms, the perceived disturbance of personal goals, (i.e., the appraisal of headache related goal hindrance and reduced goal attainability) and mood (see Figure 1b).
Figure 1b – Issue 2: associations between chronic headache symptoms,
goal disturbance, and mood.
First, we conducted an experience sampling study to gain insight into how pain intensity, a lack of energy, and negative affect influenced the appraisal of daily activities in the context of chronic migraine (Chapter 3). We found that patients experienced more hindrance in daily activities when pain intensity and negative affect at the previous moment were higher, and energy was lower, with pain intensity being the strongest predictor of activity hindrance. Notably, the relationship between pain intensity, negative affect, and energy was reciprocal. This could implicate that migraine pain does not only interrupt the engagement in activities, but can also drain resources that are needed for such activities (Affleck, Urrows, Tennen, Higgins, & Abeles, 1996; Hardy, Crofford, & Segerstrom, 2011). As research in adolescents with episodic headache suggested that the daily interference of headache may culminate in the disturbance of personal goals (Massey, Garnefski, & Gebhardt, 2009), Chapter 4 conducted a first exploration of the relationship between headache symptom severity and personal goal appraisals in adults. More frequent headache was associated with lower perceived attainability of personal goals (not
specifically due to headache), while more intense headache was associated with higher headache-related goal hindrance, which is in line with earlier studies showing that goal pursuit is appraised more negatively in the context of more severe pain (Affleck et al., 2001; Karoly & Ruehlman, 1996; Karoly, Okun, Enders, & Tennen, 2014). A notable finding was that achievement goals (e.g., be successful in work) were rated as most hindered, but at the same time as most attainable.As working can be an important way of achieving independence, developing oneself, being connected to others, or contributing to society (Rosso, Dekas, & Wrzesniewski, 2010), it could be that people use strategies to keep work goals attainable despite the high interference of headache. For further discussion of this issue, see next section.
Although it can be expected that chronic headache impacts on goal pursuit, we found that there was considerable variation in how people appraised this impact. In accordance with stress-coping theory (Maes, Leventhal, & de Ridder, 1996), variation in the appraisal of goal disturbance accounted for individual differences in mood. In a sample of headache clinic patients, greater headache-related goal hindrance was associated with lower positive affect, and lower goal attainability with higher negative affect, even when controlling for headache severity (Chapter 4). In a different sample of patients with colorectal cancer, we further found that the appraisal of cancer-related goal hindrance continued to explain individual differences in positive and negative affect over a period of 18 months (Chapter
6). These findings are in line with evidence in a range of other chronic somatic conditions
(e.g., (Boersma, Maes, & van Elderen, 2005; Janse, Sprangers, Ranchor, & Fleer, 2015; Offerman, Schroevers, van der Velden, de Boer, & Pruyn, 2010; Vroman, Chamberlain, & Warner, 2009) and underscore the importance of the perception of successful goal pursuit for mood. A common finding across our two samples was that the appraisal of goal disturbance affected both positive and negative affect, which is in line with Control Theory (Carver & Scheier, 1982; Carver & Scheier, 2001). Thus, the interference of illness with goal pursuit may not only increase the risk of experiencing negative emotions (e.g.,
frustration), but also limit opportunities for experiencing positive emotions (e.g., joy, satisfaction).
In sum, our studies are the first to demonstrate the impact of headache symptoms on the appraisal of personal goal pursuit, and its consequences for mood in adults with chronic headache. Pain intensity, energy, and negative affect were found to influence the experience of goal pursuit in the context of chronic headache. A more negative appraisal of personal goals was in turn associated with lower positive and higher negative affect. These findings suggest that interventions aiming to enhance mood patients with chronic headache may not only focus on improving pain-management, but also on altering personal goal appraisals.
Goal-management and mood
Third, this thesis examined the role of goal-management in the adjustment to chronic headache (see Figure 1c).
Figure 1c – Issue 3: the role of goal-management in the adjustment to chronic headache
As there was no prior research on goal-management in chronic headache, we conducted an exploratory qualitative study to gain insight into the nature and process of
goal-management in the context of chronic headache (Chapter 5). In line with the Dual Process Model (Brandtstädter & Renner, 1990; Brandtstädter & Rothermund, 2002), we found that patients used both assimilative and accommodative strategies to be able to pursue personal goals despite the limitations imposed by headache. Accommodative strategies could be further distinguished in goal disengagement and goal re-engagement strategies, which is in accordance with existing literature on accommodative coping (Wrosch, Scheier, Miller, Schulz, & Carver, 2003). Interestingly, we found that also assimilative strategies could be distinguished in two types, namely ‘resource depleting strategies’ (e.g., continue activities in presence of symptoms) and ‘resource replenishing strategies’ (e.g., ask for help). To our knowledge, this distinction has not previously been made. It may however be useful to make this distinction given that each type of strategy could be associated with a different outcome. For instance, the (over)use of acute medications has been associated with high
disability and poor well-being (Evers & Marziniak, 2010; Lanteri-Minet, Duru, Mudge, & Cottrell, 2011) while asking for help may in fact be beneficial. Of note, patient reports revealed that resource-depleting strategies were often used for work-related goals, as work activities were perceived as important but also as difficult to adjust (e.g., because of responsibilities, set working hours, etc.). This may explain why patients in our headache clinic sample rated achievement goals (on average) as highly hindered, yet as highly attainable (Chapter 4).
With regard to the process of goal-management, we identified three phases: (i) a persistence phase characterized by the predominant use of resource-depleting assimilative strategies, (ii) a reorientation phase in which patients switched to using accommodative strategies, and (iii) a balancing phase in which resource-depleting and resource-replenishing assimilative strategies were combined (Chapter 5). While patients experienced an increase in disability in the persistence phase, the reorientation phase was found to be associated with recovery from disability. Thus, although resource-depleting strategies may be effective in the short term, relying too heavily on these strategies could be harmful in the longer term. Nevertheless, many patients only moved to the reorientation phase after developing serious complications such as daily headaches, burn-out, or depression. These findings support results of earlier quantitative studies demonstrating that accommodative coping protects against disability in the context of pain (Arends, Bode, Taal, & Van de Laar, 2013; Goossens et al., 2010; Schmitz, Saile, & Nilges, 1996). Our findings however add to these studies by showing that making the switch from assimilation to accommodation (e.g., deciding to give up on goals) is not self-evident. In addition to more stable factors such as personality (Hoyle & Gallagher, 2015), a factor that may influence this process is perceived control over pain. Theory suggests that people only switch to accommodation when perceived control over the situation is low (Schmitz et al., 1996). Interestingly, ‘control’ appears to be a double-edged sword in the context of headache in the sense that patients may need to allow headache some control over their life in order to regain control (Varkey, Linde, & Henoch, 2013).
Findings of our prospective study in colorectal cancer patients further demonstrated the importance of accommodative coping, and revealed a different impact of goal
disengagement versus goal re-engagement on mood (Chapter 6). Higher goal
disengagement tendencies were found to be associated with lower negative affect in the 18 months following cancer diagnosis, while higher goal re-engagement tendencies were associated with higher positive affect. This finding appears to support the theoretical assumption that goal disengagement reduces psychological distress resulting from the confrontation with unattainable goals, while goal re-engagement enhances positive well-being by promoting the engagement in other meaningful activities (Wrosch et al., 2003). Thus, positive and negative affect appear to be influenced by different self-regulatory strategies and may therefore need to be targeted by different types of interventions.
Whether our findings can be replicated in the context of chronic headache however remains a topic for further investigation. Findings of our qualitative study (Chapter 5) at least
frustration), but also limit opportunities for experiencing positive emotions (e.g., joy, satisfaction).
In sum, our studies are the first to demonstrate the impact of headache symptoms on the appraisal of personal goal pursuit, and its consequences for mood in adults with chronic headache. Pain intensity, energy, and negative affect were found to influence the experience of goal pursuit in the context of chronic headache. A more negative appraisal of personal goals was in turn associated with lower positive and higher negative affect. These findings suggest that interventions aiming to enhance mood patients with chronic headache may not only focus on improving pain-management, but also on altering personal goal appraisals.
Goal-management and mood
Third, this thesis examined the role of goal-management in the adjustment to chronic headache (see Figure 1c).
Figure 1c – Issue 3: the role of goal-management in the adjustment to chronic headache
As there was no prior research on goal-management in chronic headache, we conducted an exploratory qualitative study to gain insight into the nature and process of
goal-management in the context of chronic headache (Chapter 5). In line with the Dual Process Model (Brandtstädter & Renner, 1990; Brandtstädter & Rothermund, 2002), we found that patients used both assimilative and accommodative strategies to be able to pursue personal goals despite the limitations imposed by headache. Accommodative strategies could be further distinguished in goal disengagement and goal re-engagement strategies, which is in accordance with existing literature on accommodative coping (Wrosch, Scheier, Miller, Schulz, & Carver, 2003). Interestingly, we found that also assimilative strategies could be distinguished in two types, namely ‘resource depleting strategies’ (e.g., continue activities in presence of symptoms) and ‘resource replenishing strategies’ (e.g., ask for help). To our knowledge, this distinction has not previously been made. It may however be useful to make this distinction given that each type of strategy could be associated with a different outcome. For instance, the (over)use of acute medications has been associated with high
disability and poor well-being (Evers & Marziniak, 2010; Lanteri-Minet, Duru, Mudge, & Cottrell, 2011) while asking for help may in fact be beneficial. Of note, patient reports revealed that resource-depleting strategies were often used for work-related goals, as work activities were perceived as important but also as difficult to adjust (e.g., because of responsibilities, set working hours, etc.). This may explain why patients in our headache clinic sample rated achievement goals (on average) as highly hindered, yet as highly attainable (Chapter 4).
With regard to the process of goal-management, we identified three phases: (i) a persistence phase characterized by the predominant use of resource-depleting assimilative strategies, (ii) a reorientation phase in which patients switched to using accommodative strategies, and (iii) a balancing phase in which resource-depleting and resource-replenishing assimilative strategies were combined (Chapter 5). While patients experienced an increase in disability in the persistence phase, the reorientation phase was found to be associated with recovery from disability. Thus, although resource-depleting strategies may be effective in the short term, relying too heavily on these strategies could be harmful in the longer term. Nevertheless, many patients only moved to the reorientation phase after developing serious complications such as daily headaches, burn-out, or depression. These findings support results of earlier quantitative studies demonstrating that accommodative coping protects against disability in the context of pain (Arends, Bode, Taal, & Van de Laar, 2013; Goossens et al., 2010; Schmitz, Saile, & Nilges, 1996). Our findings however add to these studies by showing that making the switch from assimilation to accommodation (e.g., deciding to give up on goals) is not self-evident. In addition to more stable factors such as personality (Hoyle & Gallagher, 2015), a factor that may influence this process is perceived control over pain. Theory suggests that people only switch to accommodation when perceived control over the situation is low (Schmitz et al., 1996). Interestingly, ‘control’ appears to be a double-edged sword in the context of headache in the sense that patients may need to allow headache some control over their life in order to regain control (Varkey, Linde, & Henoch, 2013).
Findings of our prospective study in colorectal cancer patients further demonstrated the importance of accommodative coping, and revealed a different impact of goal
disengagement versus goal re-engagement on mood (Chapter 6). Higher goal
disengagement tendencies were found to be associated with lower negative affect in the 18 months following cancer diagnosis, while higher goal re-engagement tendencies were associated with higher positive affect. This finding appears to support the theoretical assumption that goal disengagement reduces psychological distress resulting from the confrontation with unattainable goals, while goal re-engagement enhances positive well-being by promoting the engagement in other meaningful activities (Wrosch et al., 2003). Thus, positive and negative affect appear to be influenced by different self-regulatory strategies and may therefore need to be targeted by different types of interventions.
Whether our findings can be replicated in the context of chronic headache however remains a topic for further investigation. Findings of our qualitative study (Chapter 5) at least
suggest that the adaptiveness of goal re-engagement may depend on whether newly adopted goals allow for a healthy balance between using and restoring resources.
To summarize, our findings provide insight into the nature and complexity of goal-management in the context of chronic headache and support earlier studies demonstrating the importance of accommodative coping in the adjustment to chronic disease (Arends et al., 2013; Janse et al., 2015; Wrosch, Scheier, & Miller, 2013). Although findings in chronic headache were only exploratory, they highlight the need for further research on the role of goal-management in the adjustment to chronic headache.
METHODOLOGICAL CONSIDERATIONS Study design
A major strength of the empirical studies reported in this thesis was the use of different but complementary methods, each of which gave valuable insights into the topic under study. The experience sampling study in Chapter 2 and 3 allowed us to study the within-person, moment-to-moment interaction between changes in headache symptoms, the appraisal of daily activities, and mood. Not only does this method provide greater ecological validity (Myin-Germeys et al., 2009), it also gave insight into temporal order of the relationship between pain and negative affect, as well as into the potential reciprocal connection between negative affect and goal appraisals. Further, the cross-sectional study in Chapter 4 and the qualitative study reported in Chapter 5 allowed us to conduct a first exploration of goal appraisals and goal-management in patients with chronic headache. The qualitative method enabled us to examine the application of a generic theory (i.e., the Dual-Process Model) to the context of chronic headache, and gave new insights into the nature of goal-management in this specific context. Finally, albeit in a different population, the
longitudinal study in Chapter 6 enabled us to study the associations between goal disturbance, goal-management and mood over a longer period of time and revealed a different impact of goal disengagement and goal re-engagement on mood.
Nevertheless, a number of limitations in the design of the studies included in this thesis should be noted. First, the study in Chapter 4 used a cross-sectional design and therefore did not allow assessment of the causal order of the relationships between goal disturbance and mood. Although the prospective study in Chapter 6 did enable us to study the relationship between goals disturbance and mood in cancer patients over time, it included only three measurement time points that were spaced months apart. We therefore lacked power to study whether changes in goal disturbance and goal-management actually preceded changes in mood, or the other way around. Finally, in Chapter 5, the process of goal-management was explored through retrospective self-reports, which may have been influenced by recall bias. Greater insight into the process of goal disturbance and goal-management and its causal relationship with mood may help to decide how and when to intervene when attempting to improve well-being in chronic headache patients. A next step
would therefore be to examine the relationships under study in prospective studies which include frequent enough measurements to examine the within-person order of events.
Generalizability and sample size
Despite efforts to recruit representative samples, at least two factors may have influenced the generalizability of findings. First, for both the Experience Sampling study (Chapter 2
and 3) and the qualitative study (Chapter 5), we used a convenience sample of patients
recruited via headache outpatient clinics, local newspapers, and the headache patient society. Although patients were recruited from different sources, the fact that patients were not systematically selected (e.g., through a consecutive sampling procedure) may have introduced a selection bias. Furthermore, for the Experience Sampling study, we could only include patients who had a smartphone with internet connection and were able to fill out diary questionnaires throughout the day. Patients who respond to advertisements for a scientific study and are able and willing to complete diary assessments may differ from those who were not included in the sense that they may be higher educated, have less demanding jobs, or have lower disease severity. Although selection bias could not be estimated, it appeared that in particular males, lower educated patients, and patients from ethnic minority groups were underrepresented in our samples.
It should further be noted that most studies were conducted in relatively small samples. Although the experience sampling study (Chapter 2 and 3) included a larger number of assessments within an individual, the limited number of participants may have resulted in a lack of power to detect smaller effects for the relationships involving between-subject variables (e.g., trait mindfulness). Furthermore, we did not have sufficient power to test three-way interaction effects, for instance between pain intensity, energy, and negative affect. It was therefore not possible to test whether the co-occurrence of these three symptoms together affected daily activities more than the co-occurrence of only two symptoms. In the qualitative study (Chapter 5), a larger sample size may have allowed us to compare patients with different types of headache. For instance, it would have been
interesting to compare patients with chronic migraine and chronic tension-type headache, as chronic migraine patients may encounter more or other challenges in setting attainable goals due to the intensity of headache and presence of prodromal and postdrome symptoms. Thus, recruiting larger samples and using more systematic sampling procedures in future studies may help to address remaining questions and enhance generalizability of findings.
Assessment of goal disturbance and goal-management
In this thesis, goal disturbance was operationalized as the illness-related hindrance and reduced attainability of personal goals. By only focusing on these two aspects, it might be that other important aspects of disturbed goal pursuit were missed. An aspect that may particularly relevant for the context of chronic headache is goal conflict. Goal conflict
suggest that the adaptiveness of goal re-engagement may depend on whether newly adopted goals allow for a healthy balance between using and restoring resources.
To summarize, our findings provide insight into the nature and complexity of goal-management in the context of chronic headache and support earlier studies demonstrating the importance of accommodative coping in the adjustment to chronic disease (Arends et al., 2013; Janse et al., 2015; Wrosch, Scheier, & Miller, 2013). Although findings in chronic headache were only exploratory, they highlight the need for further research on the role of goal-management in the adjustment to chronic headache.
METHODOLOGICAL CONSIDERATIONS Study design
A major strength of the empirical studies reported in this thesis was the use of different but complementary methods, each of which gave valuable insights into the topic under study. The experience sampling study in Chapter 2 and 3 allowed us to study the within-person, moment-to-moment interaction between changes in headache symptoms, the appraisal of daily activities, and mood. Not only does this method provide greater ecological validity (Myin-Germeys et al., 2009), it also gave insight into temporal order of the relationship between pain and negative affect, as well as into the potential reciprocal connection between negative affect and goal appraisals. Further, the cross-sectional study in Chapter 4 and the qualitative study reported in Chapter 5 allowed us to conduct a first exploration of goal appraisals and goal-management in patients with chronic headache. The qualitative method enabled us to examine the application of a generic theory (i.e., the Dual-Process Model) to the context of chronic headache, and gave new insights into the nature of goal-management in this specific context. Finally, albeit in a different population, the
longitudinal study in Chapter 6 enabled us to study the associations between goal disturbance, goal-management and mood over a longer period of time and revealed a different impact of goal disengagement and goal re-engagement on mood.
Nevertheless, a number of limitations in the design of the studies included in this thesis should be noted. First, the study in Chapter 4 used a cross-sectional design and therefore did not allow assessment of the causal order of the relationships between goal disturbance and mood. Although the prospective study in Chapter 6 did enable us to study the relationship between goals disturbance and mood in cancer patients over time, it included only three measurement time points that were spaced months apart. We therefore lacked power to study whether changes in goal disturbance and goal-management actually preceded changes in mood, or the other way around. Finally, in Chapter 5, the process of goal-management was explored through retrospective self-reports, which may have been influenced by recall bias. Greater insight into the process of goal disturbance and goal-management and its causal relationship with mood may help to decide how and when to intervene when attempting to improve well-being in chronic headache patients. A next step
would therefore be to examine the relationships under study in prospective studies which include frequent enough measurements to examine the within-person order of events.
Generalizability and sample size
Despite efforts to recruit representative samples, at least two factors may have influenced the generalizability of findings. First, for both the Experience Sampling study (Chapter 2
and 3) and the qualitative study (Chapter 5), we used a convenience sample of patients
recruited via headache outpatient clinics, local newspapers, and the headache patient society. Although patients were recruited from different sources, the fact that patients were not systematically selected (e.g., through a consecutive sampling procedure) may have introduced a selection bias. Furthermore, for the Experience Sampling study, we could only include patients who had a smartphone with internet connection and were able to fill out diary questionnaires throughout the day. Patients who respond to advertisements for a scientific study and are able and willing to complete diary assessments may differ from those who were not included in the sense that they may be higher educated, have less demanding jobs, or have lower disease severity. Although selection bias could not be estimated, it appeared that in particular males, lower educated patients, and patients from ethnic minority groups were underrepresented in our samples.
It should further be noted that most studies were conducted in relatively small samples. Although the experience sampling study (Chapter 2 and 3) included a larger number of assessments within an individual, the limited number of participants may have resulted in a lack of power to detect smaller effects for the relationships involving between-subject variables (e.g., trait mindfulness). Furthermore, we did not have sufficient power to test three-way interaction effects, for instance between pain intensity, energy, and negative affect. It was therefore not possible to test whether the co-occurrence of these three symptoms together affected daily activities more than the co-occurrence of only two symptoms. In the qualitative study (Chapter 5), a larger sample size may have allowed us to compare patients with different types of headache. For instance, it would have been
interesting to compare patients with chronic migraine and chronic tension-type headache, as chronic migraine patients may encounter more or other challenges in setting attainable goals due to the intensity of headache and presence of prodromal and postdrome symptoms. Thus, recruiting larger samples and using more systematic sampling procedures in future studies may help to address remaining questions and enhance generalizability of findings.
Assessment of goal disturbance and goal-management
In this thesis, goal disturbance was operationalized as the illness-related hindrance and reduced attainability of personal goals. By only focusing on these two aspects, it might be that other important aspects of disturbed goal pursuit were missed. An aspect that may particularly relevant for the context of chronic headache is goal conflict. Goal conflict
arises when two goals compete for the same resources, such as time or energy (Segerstrom & Nes, 2006). As headache may limit available resources (e.g., a migraine attack may force someone to take time off work), goal conflict may be an important aspect of disturbed goal pursuit in the context of chronic headache. Goal assessment batteries such as the Personal Projects Analysis (Little, 1989) or Goal Systems Assessment Battery (Karoly & Ruehlman, 1995) may provide a more comprehensive assessment of goal appraisals as well as the way in which personal goals compete for the same resources.
Further, a free elicitation method was used to identify patient’s most prominent goals. Although this method ensured that the elicited goals were personally salient, it may have revealed only those goals that were on someone’s mind at the time of assessment. Also, goal elicitation may have been influence by someone’s current state. For example, patients may be more likely to report headache-related goals when in pain. Another disadvantage of a free elicitation method is that the relative impact of headache on different types of goals cannot be compared across individuals. For future studies, it may therefore be useful to complement a free elicitation procedure with the use of a pre-defined list of goals.
While Chapter 4 and 6 focused on the disturbance of personal goals, Chapter 3 focused on the perceived hindrance of more concrete daily activities. It should be noted that we did so without explicitly linking these daily activities to personal goals. Yet, some activities may be more closely tied to personal goals than others (e.g., spending time with the children may be more relevant for personal goals than doing grocery shopping). As the stress-coping model (Maes et al., 1996) assumes that the impact of illness-related events (e.g., pain episodes) on well-being depends on the extent to which they have implications for important personal goals, future studies may take into account the personal salience of daily activities.
Finally, two different methods were used to assess goal-management strategies, each of which has their own advantages and disadvantages. Chapter 5 used a qualitative interview to assess management strategies, which gave insight into the dynamic nature of goal-management in the specific context of chronic headache. For example, it showed how chronic headache patients use a combination of depleting and
resource-replenishing assimilative strategies to successfully pursue goals. This method is however rather time consuming and less suitable for comparing across individuals. In Chapter 6, we therefore used the Goal disengagement and Re-engagement scales (Wrosch et al., 2003), which measure how an individual typically reacts when a goal has become unattainable. Although more feasible in the context of a large scale quantitative study, these scales give limited insight into how goal-management may be influenced by contextual factors (e.g., type of goal, available resources).A mixed-methods approach in which both dispositional and situational goal-management are assessed (e.g., see (Thompson, Stanton, & Bower, 2013) may therefore be optimal.
CLINICAL IMPLICATIONS
The studies reported in this thesis highlight the need for health care professionals to be aware of the impact of chronic headache on personal goals, and the ways in which people attempt to stay engaged in meaningful goals despite headache. In particular work-related goals may require attention as these were perceived as most hindered by headache.
Clinicians should be aware of the fact that high persistence in the pursuit of such goals may not only affect mood, but may also be characterized by the use of resource-depleting assimilative strategies (e.g., overusing medication, not taking rest). Personalizing treatment by tailoring treatment strategies to an individual’s goals may increase patient satisfaction and mood, as well as enhance motivation to actively engage in treatment (Sivaraman Nair, 2003). This may include managing unrealistic expectations of treatment (e.g., full headache relief), setting achievable and personally relevant treatment goals, and supporting patients in coping with the loss of important goals (Sivaraman Nair, 2003). Online tools such as ‘Wat er toe doet’ (watertoedoet.info, De Hart & Vaatgroep) could assist patients in becoming aware of their current goals and their intrinsic motivation to self-manage their chronic condition, as well as discuss these issues with a health care professional.
Results further suggest that interventions aimed at improving mood in chronic headache patients may benefit from targeting goal appraisals, goal-management, and positive affect. Most cognitive behavioural interventions for chronic pain already incorporate goal-setting techniques in addition to pain management strategies (e.g., recognizing triggers,
distributing activities over the day). Acceptance and mindfulness-based cognitive interventions are specifically promising, as they may support patients in accepting the negative emotions accompanying disturbed goal pursuit and identifying meaningful goals that are attainable despite pain (McCracken, 2010). As goal disturbance may be to some extent unavoidable in the context of chronic headache, becoming aware of priorities and reducing ruminative thinking about goal disturbance may allow patients to focus on rewarding activities that are attainable despite chronic headache (Hamilton, Kitzman, & Guyotte, 2006). There have also been calls for a more explicit focus on self-regulation in psychological interventions (Hoyle, Gallagher, 2015). An example is an intervention targeting psychological distress in patients with low back pain, which explicitly linked behavioural pain management techniques to promotion-focused life goals (Strauman et al., 2006; Waters et al., 2016). A randomized clinical trial showed that this intervention was more effective in reducing depression than pain education and standard medical care (Waters et al., 2016). Whether an explicit focus on goals and self-regulation is also useful in psychological treatment for chronic headache is an interesting question for further research.
Thus, several existing psychological interventions offer tools to support patients in coping with the impact of chronic headache on their personal goals. Research has shown that such interventions are indeed effective in improving mood in chronic headache patients (Hoodin, Brines, Lake, Wilson, & Saper, 2000; Mo'tamedi, Rezaiemaram, & Tavallaie,
arises when two goals compete for the same resources, such as time or energy (Segerstrom & Nes, 2006). As headache may limit available resources (e.g., a migraine attack may force someone to take time off work), goal conflict may be an important aspect of disturbed goal pursuit in the context of chronic headache. Goal assessment batteries such as the Personal Projects Analysis (Little, 1989) or Goal Systems Assessment Battery (Karoly & Ruehlman, 1995) may provide a more comprehensive assessment of goal appraisals as well as the way in which personal goals compete for the same resources.
Further, a free elicitation method was used to identify patient’s most prominent goals. Although this method ensured that the elicited goals were personally salient, it may have revealed only those goals that were on someone’s mind at the time of assessment. Also, goal elicitation may have been influence by someone’s current state. For example, patients may be more likely to report headache-related goals when in pain. Another disadvantage of a free elicitation method is that the relative impact of headache on different types of goals cannot be compared across individuals. For future studies, it may therefore be useful to complement a free elicitation procedure with the use of a pre-defined list of goals.
While Chapter 4 and 6 focused on the disturbance of personal goals, Chapter 3 focused on the perceived hindrance of more concrete daily activities. It should be noted that we did so without explicitly linking these daily activities to personal goals. Yet, some activities may be more closely tied to personal goals than others (e.g., spending time with the children may be more relevant for personal goals than doing grocery shopping). As the stress-coping model (Maes et al., 1996) assumes that the impact of illness-related events (e.g., pain episodes) on well-being depends on the extent to which they have implications for important personal goals, future studies may take into account the personal salience of daily activities.
Finally, two different methods were used to assess goal-management strategies, each of which has their own advantages and disadvantages. Chapter 5 used a qualitative interview to assess management strategies, which gave insight into the dynamic nature of goal-management in the specific context of chronic headache. For example, it showed how chronic headache patients use a combination of depleting and
resource-replenishing assimilative strategies to successfully pursue goals. This method is however rather time consuming and less suitable for comparing across individuals. In Chapter 6, we therefore used the Goal disengagement and Re-engagement scales (Wrosch et al., 2003), which measure how an individual typically reacts when a goal has become unattainable. Although more feasible in the context of a large scale quantitative study, these scales give limited insight into how goal-management may be influenced by contextual factors (e.g., type of goal, available resources).A mixed-methods approach in which both dispositional and situational goal-management are assessed (e.g., see (Thompson, Stanton, & Bower, 2013) may therefore be optimal.
CLINICAL IMPLICATIONS
The studies reported in this thesis highlight the need for health care professionals to be aware of the impact of chronic headache on personal goals, and the ways in which people attempt to stay engaged in meaningful goals despite headache. In particular work-related goals may require attention as these were perceived as most hindered by headache.
Clinicians should be aware of the fact that high persistence in the pursuit of such goals may not only affect mood, but may also be characterized by the use of resource-depleting assimilative strategies (e.g., overusing medication, not taking rest). Personalizing treatment by tailoring treatment strategies to an individual’s goals may increase patient satisfaction and mood, as well as enhance motivation to actively engage in treatment (Sivaraman Nair, 2003). This may include managing unrealistic expectations of treatment (e.g., full headache relief), setting achievable and personally relevant treatment goals, and supporting patients in coping with the loss of important goals (Sivaraman Nair, 2003). Online tools such as ‘Wat er toe doet’ (watertoedoet.info, De Hart & Vaatgroep) could assist patients in becoming aware of their current goals and their intrinsic motivation to self-manage their chronic condition, as well as discuss these issues with a health care professional.
Results further suggest that interventions aimed at improving mood in chronic headache patients may benefit from targeting goal appraisals, goal-management, and positive affect. Most cognitive behavioural interventions for chronic pain already incorporate goal-setting techniques in addition to pain management strategies (e.g., recognizing triggers,
distributing activities over the day). Acceptance and mindfulness-based cognitive interventions are specifically promising, as they may support patients in accepting the negative emotions accompanying disturbed goal pursuit and identifying meaningful goals that are attainable despite pain (McCracken, 2010). As goal disturbance may be to some extent unavoidable in the context of chronic headache, becoming aware of priorities and reducing ruminative thinking about goal disturbance may allow patients to focus on rewarding activities that are attainable despite chronic headache (Hamilton, Kitzman, & Guyotte, 2006). There have also been calls for a more explicit focus on self-regulation in psychological interventions (Hoyle, Gallagher, 2015). An example is an intervention targeting psychological distress in patients with low back pain, which explicitly linked behavioural pain management techniques to promotion-focused life goals (Strauman et al., 2006; Waters et al., 2016). A randomized clinical trial showed that this intervention was more effective in reducing depression than pain education and standard medical care (Waters et al., 2016). Whether an explicit focus on goals and self-regulation is also useful in psychological treatment for chronic headache is an interesting question for further research.
Thus, several existing psychological interventions offer tools to support patients in coping with the impact of chronic headache on their personal goals. Research has shown that such interventions are indeed effective in improving mood in chronic headache patients (Hoodin, Brines, Lake, Wilson, & Saper, 2000; Mo'tamedi, Rezaiemaram, & Tavallaie,
2012; Penzien, Rains, & Andrasik, 2002; Rains, Penzien, McCrory, & Gray, 2005; Thorn et al., 2007). Although psychological interventions are generally offered as part of
multidisciplinary headache treatment in tertiary care (Gaul et al., 2011), they are however not always available to patients in primary and secondary care. Yet, the finding that some patients may have developed serious complications as a result of inadequate adjustment to headache (Chapter 5) suggests that it may be helpful to offer psychological interventions in an early stage. There have been promising initiatives to improve the accessibility of cognitive and behavioural interventions for headache patients in the Netherlands, for instance by developing e-health interventions (Sorbi, Kleiboer, van Silfhout, Vink, & Passchier, 2015) or educating nurses in GP practices (Veenstra, Kollen, de Jong, Baarveld, & van den Berg, 2016). The further optimization and implementation of such interventions deserves attention of headache researchers and clinicians.
FUTURE RESEARCH
The studies in this thesis set a first step in exploring the role of personal goal appraisals and goal-management in the adjustment to chronic headache and highlight a number of
directions for future research. First, our findings warrant further exploration of the role of positive affect as a protective resource in the adjustment to chronic headache. An integrated conceptual framework for the role of positive affect in the resilience to chronic pain has been proposed by others and may be guide future studies (Finan & Garland, 2015). One of the questions that should be further explored in future research is how positive affect contributes to improved resilience to negative affect. Two possible mechanisms were proposed by theory (Fredrickson, 2004b; Zautra et al., 2001) and tested in this thesis (Chapter 2). Findings however require replication in larger samples, as well as in patients with other types of chronic headache. If findings can indeed be replicated in future studies, a second question is how positive affect can be enhanced by intervention. Findings of
Chapter 6 suggest that promoting the re-engagement in alternative goals may be a way to
enhance positive affect. It has further been theorized that mindfulness techniques may help patients to be more open to positive experiences in the presence of pain (Finan & Garland, 2015; Hamilton et al., 2006). Future studies may test whether and how these techniques promote positive affect in patients with chronic headache.
Second, as our qualitative findings suggest that goal-management is a relevant process in the adjustment to chronic headache, a next step would be to investigate the relationship between goal-management and mood over time. Studies investigation this question would need to include repeated measures of goal-management and mood over time to test whether changes in goal-management are indeed predictive of changes in mood. While this thesis examined mood as a dimensional construct without differentiating between patients with and without a mood disorder, future studies may also investigate how goal-management contributes to the development of, and recovery from, mood disorders in patients with
chronic headache. Hoyle and Gallagher (2017) proposed a self-regulatory model for the development of depression, in which repeated goal failure results in goal persistence and consequently in a prevention-focused goal orientation and depression under the influence of ruminative thinking. This model may be integrated with existing models of chronic pain (e.g., the fear-avoidance model) and serve as a foundation for future research.
Third, the process of goal-management, both in the context of headache and in other chronic conditions, needs further exploration. Under which circumstances do people switch from assimilation to accommodation? Which individual and contextual factors influence this process? And how can we accelerate this process through intervention? A question that is related to this issue is the interplay between goal-management and pain acceptance. In self-regulation terms, pain acceptance has been defined as: “The disengagement from the
unattainable goal to control pain, and the reengagement into other valuable goals that are less affected by pain” (Lauwerier et al., 2015). Although studies have found that pain
acceptance and accommodative coping are associated (Crombez, Lauwerier, Goubert, & Van Damme, 2016; Kranz, Bollinger, & Nilges, 2010), it is still unclear whether letting go of the goal to control pain is a necessary precondition for the accommodation to chronic (head)pain, or whether the disengagement from unattainable goals may perhaps make the goal to control pain less salient.
Fourth, while this thesis focused on mood, research in other chronic pain conditions has shown that personal goals and goal-management can also influence other aspects such as attention to pain, pain-related worrying, and coping behaviour (Crombez, Eccleston, Van Damme, Vlaeyen, & Karoly, 2012; Van Damme, Crombez, & Eccleston, 2008). It may be particularly interesting to explore the role of goal-management in the development of, and recovery from, medication-overuse headache (MOH). MOH is a secondary headache disorder that results from the overuse of analgesics, triptans, or other pain killers and is associated with poor quality of life and a poor response to headache treatment (Diener & Limmroth, 2004; Lanteri-Minet et al., 2011). Findings of our qualitive study suggest that medication overuse is more likely to occur in the context of high persistence in the pursuit of disturbance (Chapter 5). In addition, a study by Lauwerier et al. showed that an assimilative goal-management approach, aimed at solving pain, was associated with a higher risk of MOH in migraine patients (Lauwerier, Paemeleire, Van Damme, Goubert, & Crombez, 2011). Insight into the role of goal-management in MOH may thus help to identify patients at risk of developing MOH and reveal new opportunities for intervention.
