| Literature DB >> 27596922 |
Norazah Abu Bakar1, Mariam Torkamani2, Surat Tanprawate1, Giorgio Lambru1, Manjit Matharu1, Marjan Jahanshahi3.
Abstract
BACKGROUND: Cluster headache (CH) is a rare, excruciating and highly disabling primary headache disorder. Using non cluster headache specific measures, previous studies have shown that CH has a significant negative impact on patients' quality of life (QoL), but a CH-specific QoL scale is currently unavailable. Thus, the objective of this study was to develop and validate a CH-specific QoL scale.Entities:
Keywords: Cluster headache; Headache; Quality of life; Trigeminal autonomic cephalalgia
Mesh:
Year: 2016 PMID: 27596922 PMCID: PMC5011462 DOI: 10.1186/s10194-016-0674-1
Source DB: PubMed Journal: J Headache Pain ISSN: 1129-2369 Impact factor: 7.277
Sociodemographic and headache characteristics of the participants based on method of recruitment
| Characteristic | Total | NHNN | OUCH UK |
|
|---|---|---|---|---|
| Age, mean ± SD | 52.4 ± 12.3 | 51.1 ± 12.1 | 53.2 ± 12.4 | 0.109 |
| Gender (male: female) | 2.1: 1 | 2.2: 1 | 2.1: 1 | 0.820 |
| Marital status, | 0.079 | |||
| Single | 60 (14.9 %) | 25 (16.9 %) | 35 (13.7 %) | |
| Married/cohabiting | 304 (75.2 %) | 103 (69.6 %) | 201 (78.5 %) | |
| Widowed | 12 (3.0 %) | 4 (2.7 %) | 8 (3.1 %) | |
| Divorced/separated | 28 (6.9 %) | 16 (10.8 %) | 12 (4.7 %) | |
| Years of education, | 0.122 | |||
| 1–11 | 109 (27.4 %) | 45 (31.0 %) | 64 (25.3 %) | |
| 12–13 | 73 (18.3 %) | 32 (22.1 %) | 41 (16.2 %) | |
| 14–17 | 167 (42.0 %) | 55 (37.9 %) | 112 (44.3 %) | |
| 18 + | 49 (12.3 %) | 13 (9.0 %) | 36 (14.2 %) | |
| Smokers, | 186 (45.8 %) | 70 (47.2 %) | 116 (45.0 %) | 0.649 |
| Duration since onset of CH (years), mean ± SD | 19.3 ± 11.5 | 18.8 ± 10.7 | 19.6 ± 12.0 | 0.483 |
| Duration of CH (minutes), mean ± SD | 46.5 ± 58.8 | 48.6 ± 52.9 | 45.2 ± 62.1 | 0.601 |
| Frequency of CH attacks (number/day), mean ± SD | 3.5 ± 2.4 | 3.5 ± 2.1 | 3.5 ± 2.5 | 0.892 |
| Severity of CH attacks, | 0.057 | |||
| Mild | 1 (0.2 %) | 1 (0.7 %) | 0 (0.0 %) | |
| Moderate | 15 (3.7 %) | 9 (6.1 %) | 6 (2.3 %) | |
| Severe | 29 (7.1 %) | 15 (10.1 %) | 14 (5.4 %) | |
| Very severe | 61 (15.0 %) | 20 (13.5 %) | 41 (15.9 %) | |
| Excruciating | 300 (73.9 %) | 103 (69.6 %) | 197 (76.4 %) |
NHNN The National Hospital for Neurology and Neurosurgery, OUCH UK The Organisation for the Understanding of Cluster Headache, United Kingdom, CH cluster headache, SD standard deviation
*Based on two-sample t-tests for continuous variables and Chi-square tests for categorical variables
Results of the principal component factor analysis of the CHQ scale
| Items | Factor 1 | Factor 2 | Factor 3 | Factor 4 |
|---|---|---|---|---|
| Avoided leaving the house | 0.76 | |||
| Avoided making plans due to unpredictability of CH e.g., holidays | 0.72 | |||
| Felt unable to complete duties at work | 0.66 | |||
| Had difficulty in getting involved in leisure activities e.g., cinema, theatre, etc.? | 0.63 | |||
| Avoided crowded and noisy places e.g., public transport, pubs, etc. | 0.57 | |||
| Felt that the severity of cluster headache affected your daily activities | 0.56 | |||
| Been less involved in family affairs e.g., interaction with children, planning holidays | 0.54 | |||
| Been unable to socialise/spend time with friends and family | 0.46 | |||
| Been unable to achieve your daily goals and carry out routines and chores | 0.42 | |||
| Felt less respected by others | 0.89 | |||
| Had problems with close personal relationship | 0.73 | |||
| Felt you were a burden on family and friends | 0.71 | |||
| Felt self-conscious and uncomfortable about your appearance after a cluster headache attack (e.g., swelling/redness of eyes and facial sweating, etc.) | 0.68 | |||
| Felt that others are dismissive of your cluster headaches | 0.61 | |||
| Felt aggressive | 0.53 | |||
| Felt bad about yourself, lost self-confidence or felt worthless | 0.53 | |||
| Felt like harming yourself or suicidal | 0.53 | |||
| Been irritable, impatient or less tolerant | 0.53 | |||
| Been forgetful e.g., missed appointments | 0.49 | |||
| Been unable to take care of your appearance (e.g., take a bath, put make-up on, change clothes etc.) | 0.49 | |||
| Felt isolated, lonely or vulnerable | 0.45 | |||
| Found your pain is unbearable if untreated | 0.67 | |||
| Dreaded that the headache would not go away | 0.48 | |||
| Felt lacking in energy and constantly tired | −0.88 | |||
| Felt sleepy, worn out or less able to concentrate due to nocturnal attacks of CH | −0.72 | |||
| Had problems concentrating e.g., reading paper, watching TV, etc. | −0.62 | |||
| Been unable to think clearly | −0.60 | |||
| Felt tense or anxious | −0.48 | |||
| % of variance explained | 43.11 | 5.59 | 4.06 | 3.38 |
CHQ cluster headache specific quality of life, ADL activities of daily living
Item to total correlations and Cronbach’s alpha for the CHQ scale
| Scale/Items | Corrected item to total correlation | Cronbach’s alpha |
|---|---|---|
| Restriction of ADL | 0.91 | |
| Avoided leaving the house | 0.67 | |
| Avoided making plans due to unpredictability of CH e.g., holidays | 0.66 | |
| Felt unable to complete duties at work | 0.70 | |
| Had difficulty in getting involved in leisure activities e.g., cinema, theatre, etc.? | 0.78 | |
| Avoided crowded and noisy places e.g., public transport, pubs, etc. | 0.63 | |
| Felt that the severity of cluster headache affected your daily activities | 0.68 | |
| Been less involved in family affairs eg interaction with children,planning holidays | 0.67 | |
| Been unable to socialise/spend time with friends and family | 0.73 | |
| Been unable to achieve your daily goals and carry out routines and chores | 0.69 | |
| Impact on mood and interpersonal relationships | 0.90 | |
| Felt less respected by others | 0.72 | |
| Had problems with close personal relationship | 0.71 | |
| Felt you were a burden on family and friends | 0.73 | |
| Felt self-conscious and uncomfortable about your appearance after a cluster headache attack (eg swelling/redness of eyes and facial sweating, etc.) | 0.65 | |
| Felt that others are dismissive of your cluster headaches | 0.50 | |
| Felt aggressive | 0.59 | |
| Felt bad about yourself, lost self-confidence or felt worthless | 0.63 | |
| Felt like harming yourself or suicidal | 0.59 | |
| Been irritable, impatient or less tolerant | 0.63 | |
| Been forgetful e.g., missed appointments | 0.58 | |
| Been unable to take care of your appearance (eg take a bath, put make-up on, change clothes etc.) | 0.55 | |
| Felt isolated, lonely or vulnerable | 0.71 | |
| Pain and anxiety | 0.52 | |
| Found your pain is unbearable if untreated | 0.37 | |
| Dreaded that the headache would not go away | 0.37 | |
| Lack of vitality | 0.85 | |
| Felt lacking in energy and constantly tired | 0.69 | |
| Felt sleepy, worn out or less able to concentrate due to nocturnal attacks of CH | 0.61 | |
| Had problems concentrating e.g., reading paper, watching TV, etc. | 0.64 | |
| Been unable to think clearly | 0.70 | |
| Felt tense or anxious | 0.66 |
Cronbach’s alpha and test-retest reliability at the first and second assessment occasions
| Scale | Cronbach’s alpha time 1 | Cronbach’s alpha time 2 | Test-retest reliability |
|---|---|---|---|
| Restriction of ADL | 0.91 | 0.93 | 0.84 |
| Impact on mood and interpersonal relationships | 0.90 | 0.87 | 0.83 |
| Pain and anxiety | 0.52 | 0.63 | 0.71 |
| Lack of vitality | 0.85 | 0.80 | 0.80 |
Correlation coefficients (p values) between the CHQ subscales and the EQ-5D and SF-36 generic and MSQ v2.1 migraine-specific quality of life measures
| Restriction of ADL | Impacts on mood and interpersonal relationships | Pain and anxiety | Lack of vitality | |
|---|---|---|---|---|
| EQ-5D | ||||
| Mobility | 0.28a | 0.27a | 0.07c | 0.21a |
| Self-care | 0.31a | 0.39a | 0.10b | 0.27a |
| Usual activities | 0.35a | 0.43a | 0.14a | 0.29a |
| Pain/discomfort | 0.19a | 0.30a | 0.11b | 0.14a |
| Anxiety/depression | 0.39a | 0.54a | 0.28a | 0.38a |
| SF-36 | ||||
| Physical functioning (PF) | −0.27a | −0.37a | −0.11b | −0.24a |
| Role physical (RP) | −0.23a | −0.32a | −0.05c | −0.19a |
| Bodily pain (BP) | −0.23a | −0.31a | −0.12b | −0.22a |
| General health (GH) | −0.34a | −0.46a | −0.15a | −0.32a |
| Vitality (VT) | −0.37a | −0.49a | −0.22a | −0.43a |
| Social functioning (SF) | −0.47a | −0.52a | −0.21a | −0.37a |
| Role emotional (RE) | −0.41a | −0.50a | −0.21a | −0.39a |
| Mental health (MH) | −0.51a | −0.67a | −0.37a | −0.50a |
| MSQ v2.1 | ||||
| Role restrictive (RR) | 0.51a | 0.53a | 0.29a | 0.45a |
| Role preventive (RP) | 0.56a | 0.52a | 0.28a | 0.42a |
| Emotional functioning (EF) | 0.49a | 0.65a | 0.41a | 0.47a |
a p < .01: b p < .05: cnon-significant