| Literature DB >> 29248887 |
Vivien P Nichols1, David R Ellard1, Frances E Griffiths2, Atiya Kamal1, Martin Underwood1, Stephanie J C Taylor3.
Abstract
OBJECTIVE: To systematically review the qualitative literature of the lived experience of people with a chronic headache disorder.Entities:
Keywords: chronic migraine; chronic tension type headache; medication overuse; patient views; qualitative research
Mesh:
Substances:
Year: 2017 PMID: 29248887 PMCID: PMC5778309 DOI: 10.1136/bmjopen-2017-019929
Source DB: PubMed Journal: BMJ Open ISSN: 2044-6055 Impact factor: 2.692
Figure 1Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.
Quality appraisal
| Question | Coeytaux | Jonsson | Lonardi, | Tenhunen and Elander, |
| 1. Is this study qualitative research? | Yes | Yes | Yes | Yes |
| 2. Are the research questions clearly stated? | Yes | Yes | Yes | Yes |
| 3. Have ethical issues been taken into consideration? | Yes | Yes | Unclear | Unclear |
| 4. Is the qualitative approach clearly justified? | Yes | Yes | Yes | Yes |
| 5. Is the approach appropriate for the research question? | Yes | Yes | Yes | Yes |
| 6. Is the study context clearly described? | Yes | Yes | Yes | Unclear |
| 7. Is the role of the researcher clearly described? | Yes | Yes | No | No |
| 8. Is the sampling method clearly described? | Yes | Yes | Unclear | No |
| 9. Is the sampling strategy appropriate for the research question? | Unclear | Unclear | Yes | Unclear |
| 10. Is the method of data collection clearly described? | Yes | Yes | Unclear | Unclear |
| 11. Is the data collection method appropriate to the research question? | Yes | Yes | Unclear | Unclear |
| 12. Is the method of analysis clearly described? | Yes | Yes | No | Unclear |
| 13. Is the chosen analytical approach suitable for addressing the research question? | Yes | Yes | Yes | Yes |
| 14. Are the claims made supported by sufficient evidence? | Unclear | Yes | Yes | Yes |
Core studies characteristics 1
| Citation, country | Design | n=M/F, age range | Headache type | Definition of chronicity | Sources of recruitment |
| Coeytaux | Focus groups | 19 (5M/14F), 22–83 years | 68% (13) diagnosed with migraine by headache clinic neurologist, 32% (6) with tension-type headache, and 32% (6) had one or more IHS headache diagnoses | 15 or more days with headache in month preceding enrolling in RCT, duration of chronic headache pain 4 to >60 years, all but one had experienced pain-free periods ranging from a few days to a month or more | Recruited from a university-based tertiary care headache clinic who had recently participated in an RCT |
| Jonsson | Individual qualitative interviews | 14 (5M/9F), | Diagnosis of medication overuse headache (2006 IHS criteria); 10 participants self-reported migraine, mostly in combination with tension-type headache; 4 reported only tension-type headache | All reported having daily or near daily headaches. | Recruited through advertisements in the national journal of a headache patient organisation and local daily newspaper |
| Lonardi, | Open-ended biographic interviews | 31 (7M/24F), 23–74 years | All primary chronic headache; cluster=2, migraine=8, TTH=3, other primary headache (daily persistent headache)=18 | Introduction talks about chronic headache, no definition given; characteristics table by type of headache; daily persistent headache not defined; two quotes talk about daily headache | Recruited from headache centre, randomly selected by a convenience sample of consecutive patients |
| Tenhunen and Elander, | Semistructured interviews | 9 (4M/5F), 32–55 years | Clinical diagnosis of chronic daily or near daily headache | Headaches occurring on 15 or more days per month lasting for more than 4 hours per day | Purposive theoretical sampling to compare with those in previous quantitative studies (unspecified) of CDH; used a snowballing technique; no mention of where or how or why across two countries |
CDH, chronic daily headache; IHS, International Headache Society; RCT, randomised controlled trial; TTH, tension type headache.
Core characteristics 2
| Citation | Aims of study | Qualitative methods/analysis | Interview questions |
| Coeytaux | To identify which clinical outcomes are most important to patients with frequent headaches; to inform clinicians which of the many available headache assessment instruments may be helpful to assess meaningful change over time from the patient’s perspective | Focus groups | Participants were asked to (1) describe what their headaches were like and how their headaches affected their day-to-day activities; (2) describe other symptoms or sensations usually accompanying their headaches; (3) indicate some of the signs or indicators that their headaches were lessening; (4) delineate which of those symptoms from which they most wanted to get relief. They were asked if they thought quality of life was something separate from their pain severity. They were given copies of questionnaires completed during the study and asked which ones were helpful to determine whether they got better over time. |
| Jonsson | To explore how individuals with medication overuse headache use medications and other strategies to manage headaches in their daily lives, and their thoughts about their own use of acute medication | Grounded theory, interviews, | The opening question was ‘Could you tell me about your headaches?’ Participants were asked questions about their headaches and daily life, strategies to manage headaches, use of medication and thoughts about using less medication. They were encouraged to tell their stories freely and probing questions were used to obtain as much detail as possible. |
| Lonardi, | To explore the chronic headache experience as an invisible disease through narrative reconstruction | Grounded theory, interviews | A loose interview guide from clues collected from the first patients |
| Tenhunen and Elander, | To gain insight into the psychological processes which mediate quality of life impairments in chronic daily headache (CDH) | Grounded theory, interviews | Asked about the impact of CDH on occupational, physical, psychological and social areas of life |
Study themes
| Coeytaux | Jonsson | Lonardi, | Tenhunen and Elander, |
Pain severity Meaningful symptom relief Uncertainty Devaluation Meaningful assessment The most important outcome measures to patients are pain severity and frequency. A meaningful measure would be a change in pain-free days. Disability, quality of life and functional measures were not as important to patients. Diaries were not burdensome and helped to identify trends over time. | Headaches are unbearable An extra burden in everyday-life Having to make life adjustments Struggling to be able to work Being forced to cancel important events Searching for explanations Testing numerous strategies Scepticism towards prophylactic medication Resignation: nothing but the medication helps Always having the medication at hand Taking the medication because one has to, not out of choice Focusing on the headache when deciding whether to medicate Avoidance of tracking medication use Increased medication use during stressful periods in life Perceptions about the link between increased headaches and medication use | Fully accepted by family Partial acceptance by family Unaccepted by family, work expulsion from the productive world Accepted by inner family but stigmatised/excluded from the outer world | Daily activities Work and education Sleep energy and concentration Social activities Emotional reactions Perceptions of self Effects on partners and family |
Figure 2Third-level conceptual framework.